1 00:00:05,120 --> 00:00:09,960 >>WE ARE HOSTING THIS 2 00:00:09,960 --> 00:00:13,160 WORKSHOP TODAY. I WANT TO 3 00:00:13,160 --> 00:00:17,760 REALLY THANK DR. CINNAMON BLOSS 4 00:00:17,760 --> 00:00:20,520 FOR HOSTING US IN THE SAN DIEGO 5 00:00:20,520 --> 00:00:22,640 MEETING. WE ARE PLEASED TO BE 6 00:00:22,640 --> 00:00:24,840 HERE TODAY AND INVITED A NUMBER 7 00:00:24,840 --> 00:00:26,480 OF THOUGHTFUL PANELISTS TO 8 00:00:26,480 --> 00:00:30,440 DISCUSS ISSUES THAT NIH MIGHT 9 00:00:30,440 --> 00:00:32,040 EXPECT TO FACE IN THE NEXT 5 TO 10 00:00:32,040 --> 00:00:34,600 10 YEARS TO RESPECT HOW PEOPLE'S 11 00:00:34,600 --> 00:00:37,640 DATA COULD BE USED IN BIOMEDICAL 12 00:00:37,640 --> 00:00:38,920 RESEARCH. THIS MEETING TODAY IS 13 00:00:38,920 --> 00:00:40,880 A FORM OF PUBLIC ENGAGEMENT. WE 14 00:00:40,880 --> 00:00:43,920 ARE TALKING TO ALL OF YOU TODAY, 15 00:00:43,920 --> 00:00:46,400 PANELISTS AND BIO ETHICISTS AND 16 00:00:46,400 --> 00:00:48,760 DATA SCIENTISTS AND TECH 17 00:00:48,760 --> 00:00:50,440 DEVELOPERS, ET CETERA, TO HEAR 18 00:00:50,440 --> 00:00:51,720 POINTS OF VIEW ON IMPORTANT 19 00:00:51,720 --> 00:00:53,040 ISSUES AND ADDITIONALLY IF YOU 20 00:00:53,040 --> 00:00:54,880 WILL SEE, WE HAVE AN OPPORTUNITY 21 00:00:54,880 --> 00:00:57,520 FOR ANYONE LISTENING IN VIA THE 22 00:00:57,520 --> 00:00:59,240 WEBCAST TO SUBMIT QUESTIONS OR 23 00:00:59,240 --> 00:01:02,160 COMMENTS AT ANY TIME TO INBOX 24 00:01:02,160 --> 00:01:06,600 SCIENCE POLICY AT NOD.NIH.GOV. 25 00:01:06,600 --> 00:01:08,400 WE WILL MAKE SURE THEY ARE 26 00:01:08,400 --> 00:01:09,040 INCORPORATED INTO THE DISCUSSION 27 00:01:09,040 --> 00:01:11,040 AND IN ADDITION TO CONVERSATION 28 00:01:11,040 --> 00:01:15,400 TODAY WE WILL HAVE ROBUST 29 00:01:15,400 --> 00:01:16,640 CONVERSATIONS ACROSS COMMUNITIES 30 00:01:16,640 --> 00:01:18,960 IN THE US TO HEAR THEIR VIEWS 31 00:01:18,960 --> 00:01:21,080 ABOUT PERSONAL HEALTH DATA AND 32 00:01:21,080 --> 00:01:22,120 RESEARCH. WE WANT TO REALLY 33 00:01:22,120 --> 00:01:24,800 TALK ABOUT WHAT WE HAERRED FROM 34 00:01:24,800 --> 00:01:26,520 GREAT AND RICH CONVERSATIONS IN 35 00:01:26,520 --> 00:01:28,440 THE CONTEXT OF REALLY, REALLY 36 00:01:28,440 --> 00:01:30,320 IMPORTANT ISSUES AND WANT TO 37 00:01:30,320 --> 00:01:32,040 THANK ALL PEOPLE HERE TODAY FOR 38 00:01:32,040 --> 00:01:35,000 TAKING YOUR TIME TO THINK ABOUT 39 00:01:35,000 --> 00:01:36,440 THESE ISSUES AND TO REALLY THANK 40 00:01:36,440 --> 00:01:38,280 ALL THESE PEOPLE ACROSS THE US 41 00:01:38,280 --> 00:01:40,680 WHO HAVE BEEN PART OF REALLY, 42 00:01:40,680 --> 00:01:42,040 REALLY IMPORTANT CONVERSATIONS 43 00:01:42,040 --> 00:01:43,840 OVER THE LAST SEVERAL MONTHS. 44 00:01:43,840 --> 00:01:45,360 BEFORE I TURN THINGS OVER TO 45 00:01:45,360 --> 00:01:47,480 SOME OTHERS WHO HAVE BEEN 46 00:01:47,480 --> 00:01:49,200 INTEGRAL INTO THIS EFFORT, I 47 00:01:49,200 --> 00:01:51,400 WANT TO SAY A FEW WORDS ABOUT 48 00:01:51,400 --> 00:01:54,480 NIH AND OUR INTEREST IN THE USE 49 00:01:54,480 --> 00:01:57,320 OF DATA AND BIOMEDICAL RESEARCH 50 00:01:57,320 --> 00:01:59,800 AND HOW WE USE PUBLIC ENGAGEMENT 51 00:01:59,800 --> 00:02:01,320 TO INFORM OUR EFFORTS. 52 00:02:01,320 --> 00:02:03,560 CAN WE ADVANCE TO THE NEXT 53 00:02:03,560 --> 00:02:06,200 SLIDE, PLEASE? 54 00:02:06,200 --> 00:02:08,440 THANK YOU. 55 00:02:08,440 --> 00:02:12,800 SO, REALLY, NIH'S MISSION IS TO 56 00:02:12,800 --> 00:02:15,080 SEEK FUNDAMENTAL KNOWLEDGE ABOUT 57 00:02:15,080 --> 00:02:17,600 THE NATURE AND BEHAVIOR OF 58 00:02:17,600 --> 00:02:19,440 LIVING SYSTEMS AND APPLICATION 59 00:02:19,440 --> 00:02:24,080 OF NONL TO ENHANCE HEALTH, 60 00:02:24,080 --> 00:02:27,400 LENGTH AND LIFE AND ENHANCE AND 61 00:02:27,400 --> 00:02:28,440 REDUCE DISABILITY AND 62 00:02:28,440 --> 00:02:29,880 RESPONSIBLE DATA USE AND 63 00:02:29,880 --> 00:02:31,200 MANAGEMENT IS A KEY COMPONENT OF 64 00:02:31,200 --> 00:02:33,120 THIS MISSION. DATA HELPS INFORM 65 00:02:33,120 --> 00:02:37,440 THE NONL AND HOW WE APPLY THAT 66 00:02:37,440 --> 00:02:39,760 KNOWLEDGE AND SEE AS TRULY 67 00:02:39,760 --> 00:02:41,960 FUNDAMENTAL TO NIH'S MISSION 68 00:02:41,960 --> 00:02:44,240 RESPONSIBLE USE OF DATA AND DATA 69 00:02:44,240 --> 00:02:46,400 MANAGEMENT OF DATA TO SUPPORT 70 00:02:46,400 --> 00:02:46,640 SCIENCE. 71 00:02:46,640 --> 00:02:50,400 THAT IS WHY WE ARE TALK BEING IT 72 00:02:50,400 --> 00:03:00,600 HERE TODAY. 73 00:03:00,920 --> 00:03:01,920 OUR JOB IS TO ENSURE POLICY 74 00:03:01,920 --> 00:03:03,600 EVOLVES AS SCIENCE TECHNOLOGY 75 00:03:03,600 --> 00:03:06,600 EMERGES AND EVOLVES AND THAT IS 76 00:03:06,600 --> 00:03:08,040 SCANNING AND THINKING ABOUT WHAT 77 00:03:08,040 --> 00:03:10,360 IS TO COME AND IT IS TOUGH TO 78 00:03:10,360 --> 00:03:11,960 MAKE PREDICTIONS, ESPECIALLY 79 00:03:11,960 --> 00:03:12,960 ABOUT THE FUTURE. 80 00:03:12,960 --> 00:03:15,600 THAT IS WHY IT IS IMPORTANT FOR 81 00:03:15,600 --> 00:03:17,600 US TO TALK WITH PEOPLE LIKE 82 00:03:17,600 --> 00:03:19,680 THOSE WHO ARE CONVENED IN THE 83 00:03:19,680 --> 00:03:21,560 ROOM TODAY TO HEAR YOUR POINTS 84 00:03:21,560 --> 00:03:23,440 OF VIEW AND THOUGHTS AND TO 85 00:03:23,440 --> 00:03:26,000 TALK, AGAIN, TO GET PUBLIC INPUT 86 00:03:26,000 --> 00:03:28,640 AND PUBLIC COMMENT AND FEEDBACK 87 00:03:28,640 --> 00:03:30,280 FROM COMMUNITIES WHOSE DATA MAY 88 00:03:30,280 --> 00:03:31,160 BE USED. 89 00:03:31,160 --> 00:03:33,520 WE HAVE ESSENTIALLY AN ENORMOUS 90 00:03:33,520 --> 00:03:35,360 NUMBER OF THINGS WE DEAL WITH 91 00:03:35,360 --> 00:03:36,400 AND THINK ABOUT IN TERMS 92 00:03:36,400 --> 00:03:39,320 THINKING ABOUT HOW TO ENSURE 93 00:03:39,320 --> 00:03:41,240 RESEARCH PROCEEDS RESPONSIBLY 94 00:03:41,240 --> 00:03:43,120 INCLUDING ALL THESE IN THE 95 00:03:43,120 --> 00:03:44,920 CRYSTAL BALL TODAY AND THESE ARE 96 00:03:44,920 --> 00:03:46,400 INTEGRATED TO EACH OTHER. YOU 97 00:03:46,400 --> 00:03:47,960 CAN'T REALLY PICK OUT JUST ONE. 98 00:03:47,960 --> 00:03:49,640 IF YOU ADVANCE TO THE NEXT 99 00:03:49,640 --> 00:03:50,520 SLIDE, PLEASE. 100 00:03:50,520 --> 00:03:53,480 THE FOCUS HERE TODAY IS ON 101 00:03:53,480 --> 00:03:56,480 THINKING ABOUT NEW TYPES OF DATA 102 00:03:56,480 --> 00:03:58,680 ANALYSIS AND LINKAGE. 103 00:03:58,680 --> 00:04:00,240 NEXT SLIDE, PLEASE. 104 00:04:00,240 --> 00:04:03,840 IT IS NOT JUST ANY DATA. WE ARE 105 00:04:03,840 --> 00:04:05,520 HERE REALLY TO TALK ABOUT 106 00:04:05,520 --> 00:04:06,880 PERSONAL HEALTH DATA WHICH IS 107 00:04:06,880 --> 00:04:09,120 WHY, AGAIN, INTEGRATION OF 108 00:04:09,120 --> 00:04:10,200 PUBLIC ENGAGEMENT AND SPECIFIC 109 00:04:10,200 --> 00:04:12,080 RESEARCH AND TOPICS WE ARE 110 00:04:12,080 --> 00:04:13,520 TALKING ABOUT ARE SO CRITICAL. 111 00:04:13,520 --> 00:04:15,680 IT MATTERS HOW PEOPLE FEEL ABOUT 112 00:04:15,680 --> 00:04:18,280 USING THEIR DATA AND HOW IT IS 113 00:04:18,280 --> 00:04:20,320 USED IN BIOMEDICAL RESEARCH AND 114 00:04:20,320 --> 00:04:22,080 IS REALLY KEY TO HOW WE THOUGHT 115 00:04:22,080 --> 00:04:23,920 ABOUT THIS REALLY IMPORTANT 116 00:04:23,920 --> 00:04:24,880 ISSUE. 117 00:04:24,880 --> 00:04:26,400 NEXT SLIDE, PLEASE. 118 00:04:26,400 --> 00:04:28,960 AND FOR ALL THE DATA, I MEAN, 119 00:04:28,960 --> 00:04:30,840 CERTAINLY NOT ALL OF THE DATA 120 00:04:30,840 --> 00:04:33,880 THAT RESULTS FROM NIH RESEARCH 121 00:04:33,880 --> 00:04:35,920 IS PERSONAL HEALTH DATA FROM ALL 122 00:04:35,920 --> 00:04:38,800 DATA COMING FROM NIH-SUPPORTED 123 00:04:38,800 --> 00:04:39,840 RESEARCH. WE THINK ABOUT THE 124 00:04:39,840 --> 00:04:42,520 LIFE OF THE DATA AND HOW IT IS 125 00:04:42,520 --> 00:04:44,080 MANAGED FROM DATA LIFE CYCLE 126 00:04:44,080 --> 00:04:46,920 FROM COLLECTION TO ANALYSIS AND 127 00:04:46,920 --> 00:04:47,720 SHARING IN PUBLICATION AND 128 00:04:47,720 --> 00:04:50,200 STORAGE AND ACCESS AND REUSE AND 129 00:04:50,200 --> 00:04:52,960 IS A REALLY ITERATIVE PROCESS 130 00:04:52,960 --> 00:04:54,680 AND FROM BOTTOM THERE IS TONS 131 00:04:54,680 --> 00:04:59,880 AND TONS OF TOPICS, SOME FAIRLY 132 00:04:59,880 --> 00:05:02,280 PRACTICAL AND IMPLEMENTATION AND 133 00:05:02,280 --> 00:05:05,440 CURATION AND STORAGE COST AND 134 00:05:05,440 --> 00:05:07,920 REALLY BROAD THEMES WE EXPLORE 135 00:05:07,920 --> 00:05:09,880 TODAY LIKE PRIVACY AND CONSENT. 136 00:05:09,880 --> 00:05:16,040 ADVANCING TO THE NEXT SLIDE, 137 00:05:16,040 --> 00:05:20,880 PLE 138 00:05:20,880 --> 00:05:21,120 PLEASE. 139 00:05:21,120 --> 00:05:23,040 THIS SEEMS LIKE TECHNICAL JARGON 140 00:05:23,040 --> 00:05:25,360 AND IMPORTANT TO PUT IN CONTEXT 141 00:05:25,360 --> 00:05:26,440 TALKING ABOUT PERSONAL HEALTH 142 00:05:26,440 --> 00:05:30,080 DATA IT HAS TO DEAL WITH 143 00:05:30,080 --> 00:05:30,720 PARTICIPANTS AND THOSE WILLING 144 00:05:30,720 --> 00:05:33,400 TO BE PART OF THE RESEARCH TO 145 00:05:33,400 --> 00:05:35,280 HELP INFORM IMPORTANT WORK WE DO 146 00:05:35,280 --> 00:05:37,040 TO UNDERSTAND HEALTH. WHAT HAS 147 00:05:37,040 --> 00:05:39,840 TO REALLY BE PART OF THE 148 00:05:39,840 --> 00:05:42,240 ECOSYSTEM THROUGHOUT AS WELL IS 149 00:05:42,240 --> 00:05:43,560 THINKING ABOUT THE PARTICIPANT 150 00:05:43,560 --> 00:05:45,480 ROLE IN RESEARCH AND HOW THEY 151 00:05:45,480 --> 00:05:47,160 FEEL ABOUT -- ABOUT WHAT WE ARE 152 00:05:47,160 --> 00:05:49,120 DOG. THAT REALLY IMPLORES US TO 153 00:05:49,120 --> 00:05:51,320 CONTINUE TO THINK ABOUT WHAT 154 00:05:51,320 --> 00:05:52,240 PROGRAMS, POLICIES, AND 155 00:05:52,240 --> 00:05:54,320 PROCESSES ARE NEEDED TO INCREASE 156 00:05:54,320 --> 00:05:56,160 RETURNS ON PUBLIC INVESTMENT AND 157 00:05:56,160 --> 00:05:59,160 DATA USED IN BIOMEDICAL RESEARCH 158 00:05:59,160 --> 00:06:01,720 AND HUGELY IMPORTANT ENSURE DATA 159 00:06:01,720 --> 00:06:04,120 ARE MANAGED ETHICALLY AND 160 00:06:04,120 --> 00:06:06,200 RESPONSIBLY AND PROMOTING AND 161 00:06:06,200 --> 00:06:07,800 SUSTAINING THESE PRACTICES. 162 00:06:07,800 --> 00:06:08,840 NEXT SLIDE, PLEASE. 163 00:06:08,840 --> 00:06:12,040 AS I SAID, WE THINK THESE ARE 164 00:06:12,040 --> 00:06:13,040 REALLY TOPICS VERY MUCH AT 165 00:06:13,040 --> 00:06:15,640 INTERSECTION OF THINKING ABOUT 166 00:06:15,640 --> 00:06:17,040 PUBLIC INPUT AND PUBLIC COMMENT 167 00:06:17,040 --> 00:06:19,680 AND WAYS IN THE US GOVERNMENT WE 168 00:06:19,680 --> 00:06:22,680 CAN THINK ABOUT GETTING COMMENT, 169 00:06:22,680 --> 00:06:23,600 FEEDBACK INTERACTION WITH 170 00:06:23,600 --> 00:06:25,600 MEMBERS OF THE PUBLIC AND AS WE 171 00:06:25,600 --> 00:06:27,320 KNOW, THERE ARE PROS AND CONS TO 172 00:06:27,320 --> 00:06:30,600 ALL SORTS OF MODES OF 173 00:06:30,600 --> 00:06:32,080 INTERACTION AND THINGS WE THINK 174 00:06:32,080 --> 00:06:33,400 HAVE PLACE AND VALUE AND 175 00:06:33,400 --> 00:06:35,800 THINKING ABOUT OTHER WAYS TO DO 176 00:06:35,800 --> 00:06:36,040 THINGS. 177 00:06:36,040 --> 00:06:37,760 FOR EXAMPLE, SOMETIMES WE PUT 178 00:06:37,760 --> 00:06:39,400 THINGS OUT THINKING ABOUT A NEW 179 00:06:39,400 --> 00:06:40,720 POLICY OR TRYING TO GET 180 00:06:40,720 --> 00:06:42,680 INFORMATION ON PUBLIC VIEWS ON 181 00:06:42,680 --> 00:06:44,840 SOMETHING WE MIGHT PUT OUT AN 182 00:06:44,840 --> 00:06:46,440 ANNOUNCEMENT IN THE FEDERAL 183 00:06:46,440 --> 00:06:47,240 REGISTER OR REQUEST FOR 184 00:06:47,240 --> 00:06:49,880 INFORMATION AND THOSE THINGS ARE 185 00:06:49,880 --> 00:06:51,200 INCREDIBLY VALUABLE. THEY ARE 186 00:06:51,200 --> 00:06:54,240 SORT OF ANYONE CAN WRITE IN AND 187 00:06:54,240 --> 00:06:56,040 PROVIDE VIEWS AND CONTEXT IN 188 00:06:56,040 --> 00:06:58,760 EXACTLY HOW THEY WANT TO SAY IT. 189 00:06:58,760 --> 00:07:02,200 THAT CAN BE INTEGRATED THINKING 190 00:07:02,200 --> 00:07:05,240 ABOUT IS CHOICES THAT FEDERAL 191 00:07:05,240 --> 00:07:06,240 GOVERNMENT MAKES AND DOESN'T 192 00:07:06,240 --> 00:07:08,840 PROVIDE OPPORTUNITY FOR DIALOGUE 193 00:07:08,840 --> 00:07:12,040 THAT IS A VERY MUCH ONE WAY 194 00:07:12,040 --> 00:07:14,000 COMMUNICATION BACK AND FORTH AND 195 00:07:14,000 --> 00:07:15,520 NOT EVERYBODY READS FEDERAL 196 00:07:15,520 --> 00:07:17,440 REGISTER EVER DAY AND LOTS OF 197 00:07:17,440 --> 00:07:20,920 REASONS THIS CAN BE VALUABLE AND 198 00:07:20,920 --> 00:07:23,080 IS IN NO WAY ENOUGH. 199 00:07:23,080 --> 00:07:25,280 WE TRY TO ENGAGE WITH PEOPLE ON 200 00:07:25,280 --> 00:07:28,440 SOCIAL MEDIA AND IN WAYS TO 201 00:07:28,440 --> 00:07:30,160 CONNECT AND MAKE CONNECTIONS 202 00:07:30,160 --> 00:07:31,960 WITH PEOPLE IN DIFFERENT VENUES. 203 00:07:31,960 --> 00:07:34,320 AGAIN, IT DOESN'T REALLY ALLOW 204 00:07:34,320 --> 00:07:36,040 FOR REAL DIALOGUE. 205 00:07:36,040 --> 00:07:38,240 A BENEFIT, FOR EXAMPLE, THE 206 00:07:38,240 --> 00:07:39,480 WORKSHOP HERE TODAY IS I THINK 207 00:07:39,480 --> 00:07:41,400 YOU WILL HEAR THAT WE WILL HAVE 208 00:07:41,400 --> 00:07:46,280 LOTS OF DIALOGUE AND ITERATIVE 209 00:07:46,280 --> 00:07:46,920 CONVERSATION AND FEEDBACK AND 210 00:07:46,920 --> 00:07:47,600 THERE ARE LIMITATIONS TO THIS 211 00:07:47,600 --> 00:07:49,800 AND WHO IS IN THE ROOM AND WHO 212 00:07:49,800 --> 00:07:51,680 IS PART OF THIS CONVERSATION. 213 00:07:51,680 --> 00:07:54,040 SO, ALL THESE THINGS HAVE PLACE 214 00:07:54,040 --> 00:07:55,440 AND VALUE AND ARE IMPORTANT TO 215 00:07:55,440 --> 00:07:57,280 HOW WE THINK ABOUT GETTING 216 00:07:57,280 --> 00:07:58,680 PUBLIC FEEDBACK AND INPUT AND WE 217 00:07:58,680 --> 00:08:00,840 KNOW WE HAVE TO DO MORE. IF YOU 218 00:08:00,840 --> 00:08:03,040 CAN ADVANCE TO THE NEXT SLIDE, 219 00:08:03,040 --> 00:08:03,920 PLEASE. 220 00:08:03,920 --> 00:08:06,120 SO, THAT IS PART OF WHAT WE ARE 221 00:08:06,120 --> 00:08:07,720 TALKING ABOUT HERE TODAY AND 222 00:08:07,720 --> 00:08:10,160 THINKING OF WAYS TO EXTEND HOW 223 00:08:10,160 --> 00:08:12,560 WE DO PUBLIC ENGAGEMENT AND WAY 224 00:08:12,560 --> 00:08:15,200 TO THINK ABOUT CONVERSATIONS IN 225 00:08:15,200 --> 00:08:16,760 AND WITH COMMUNITIES AND LOTS OF 226 00:08:16,760 --> 00:08:18,640 WHAT YOU WILL HEAR ABOUT TODAY. 227 00:08:18,640 --> 00:08:20,040 BUT, THERE IS LOTS OF QUESTIONS 228 00:08:20,040 --> 00:08:22,880 THERE TOO. YOU KNOW, WHICH 229 00:08:22,880 --> 00:08:24,640 COMMUNITIES AND WHEN AND FOR 230 00:08:24,640 --> 00:08:26,160 WHICH TOPICS AND WHO IS INVOLVED 231 00:08:26,160 --> 00:08:27,640 IN THOSE DISCUSSIONS MEANING 232 00:08:27,640 --> 00:08:29,080 THERE IS SO MUCH TO THINK ABOUT 233 00:08:29,080 --> 00:08:31,040 IN TERMS OF HAVING DIALOGUES AS 234 00:08:31,040 --> 00:08:34,080 WELL AND IS PART OF WHAT WE ARE 235 00:08:34,080 --> 00:08:35,320 STRUGGLING WITH AND HOW WE 236 00:08:35,320 --> 00:08:36,840 TRANSLATE COMMUNITY FEEDBACK 237 00:08:36,840 --> 00:08:38,320 INTO RESPONSIBLE RESEARCH AND 238 00:08:38,320 --> 00:08:39,200 DEVELOPMENT THAT WE SAID WAS 239 00:08:39,200 --> 00:08:43,160 PART OF THE GOAL OF ALL OF THIS. 240 00:08:43,160 --> 00:08:44,880 HOW DO WE DEVELOP BEST PRACTICES 241 00:08:44,880 --> 00:08:47,040 FOR SUSTAINED RELATIONSHIPS WITH 242 00:08:47,040 --> 00:08:48,960 COMMUNITIES SO IT IS NOT A 243 00:08:48,960 --> 00:08:53,000 ONE-TIME INTERACTION ASKING FOR 244 00:08:53,000 --> 00:08:53,920 INFORMATION AND GOT GIVING 245 00:08:53,920 --> 00:08:55,440 SOMETHING BACK AND HOW IT 246 00:08:55,440 --> 00:08:57,240 BECOMES A TRUE RELATIONSHIP AND 247 00:08:57,240 --> 00:08:59,240 HOW THIS ALL FEEDS INTO 248 00:08:59,240 --> 00:09:01,960 CULTIVATING PUBLIC TRUST AND IN 249 00:09:01,960 --> 00:09:05,200 BIOMEDICAL RESEARCH. NEXT 250 00:09:05,200 --> 00:09:06,000 SLIDE, PLEASE. 251 00:09:06,000 --> 00:09:07,480 A REASON WE THOUGHT THIS TOPIC 252 00:09:07,480 --> 00:09:08,920 WE ARE THINKING ABOUT HERE TODAY 253 00:09:08,920 --> 00:09:12,040 IS RIGHT FOR PUBLIC ENGAGEMENT 254 00:09:12,040 --> 00:09:14,160 IS BECAUSE THERE HAS TRULY BEEN 255 00:09:14,160 --> 00:09:16,720 THE TERM IS OVERUSED BY 256 00:09:16,720 --> 00:09:18,400 REVELATION IN DATA SCIENCE IN 257 00:09:18,400 --> 00:09:20,160 THE PAST SEVERAL YEARS AND MANY 258 00:09:20,160 --> 00:09:22,720 YEARS AND, YOU KNOW, FOR 259 00:09:22,720 --> 00:09:24,840 EXAMPLE, MANY OF US CARRY 260 00:09:24,840 --> 00:09:26,280 COMPUTERS IN POCKETS EVERY DAY 261 00:09:26,280 --> 00:09:28,720 ATTRACTING DATA ABOUT -- SOME 262 00:09:28,720 --> 00:09:30,040 TRACK DATA ABOUT US AS PEOPLE 263 00:09:30,040 --> 00:09:31,720 AND SOME HAVE OTHER FORMS OF 264 00:09:31,720 --> 00:09:36,040 DATA WHERE WE INTERFACE WITH 265 00:09:36,040 --> 00:09:39,280 THOSE COMPUTERS IN OUR POCKETS 266 00:09:39,280 --> 00:09:41,800 AND HOW AND WHEN TECHNOLOGY 267 00:09:41,800 --> 00:09:43,760 SHOULD BE USED IN BIOMEDICAL 268 00:09:43,760 --> 00:09:45,400 RESEARCH AND WHEN IT IS 269 00:09:45,400 --> 00:09:49,360 APPROPRIATE TO USE ARTIFICIAL 270 00:09:49,360 --> 00:09:51,200 INTELLIGENCE AND WHAT ARE 271 00:09:51,200 --> 00:09:54,320 IMPLICATIONS ABOUT THIS? SO 272 00:09:54,320 --> 00:09:55,440 UBIQUITOUS AND SPECIFIC TOPIC 273 00:09:55,440 --> 00:09:57,800 AND MANY OTHERS AND THIS IS A 274 00:09:57,800 --> 00:10:00,480 TOPIC WE FELT WAS SO PRIMED FOR 275 00:10:00,480 --> 00:10:03,640 THIS TYPE OF DIALOGUE AND 276 00:10:03,640 --> 00:10:05,040 ENGAGEMENT. NEXT SLIDE, PLEASE. 277 00:10:05,040 --> 00:10:09,200 AS A RESULT, THE NIH ASKED OUR 278 00:10:09,200 --> 00:10:11,760 ADVISORY COMMITTEE IT IS REALLY 279 00:10:11,760 --> 00:10:13,160 EMERGING TECHNOLOGY ADVISORY 280 00:10:13,160 --> 00:10:16,000 COMMITTEE CALLED NOVEL AND 281 00:10:16,000 --> 00:10:18,800 EXCEPTIONAL TECHNOLOGY OR 282 00:10:18,800 --> 00:10:20,040 RESEARCH ADVISORY COMMITTEE AND 283 00:10:20,040 --> 00:10:21,520 NEXTRAC TO THINK ABOUT QUESTIONS 284 00:10:21,520 --> 00:10:24,040 OF DATA SCIENCE AND DEFINING 285 00:10:24,040 --> 00:10:26,240 CHARACTERIZING RESEARCH 286 00:10:26,240 --> 00:10:28,640 QUESTIONS REQUIRE INCREASING 287 00:10:28,640 --> 00:10:31,120 GRANULARITY AND DATA FOR 288 00:10:31,120 --> 00:10:32,680 INDIVIDUALS THAT ARE ADDRESSED 289 00:10:32,680 --> 00:10:34,200 FOR EMERGING TECHNOLOGIES AND 290 00:10:34,200 --> 00:10:36,440 NEW THINGS WITH HE CAN DO WITH 291 00:10:36,440 --> 00:10:39,440 DATA HAVE GREAT NEW POTENTIAL 292 00:10:39,440 --> 00:10:40,240 BENEFITS FOR UNDERSTANDING OF 293 00:10:40,240 --> 00:10:42,440 HUMAN HEALTH AND OF COURSE WE 294 00:10:42,440 --> 00:10:44,080 ALSO THEN HAVE TO ENSURE THAT 295 00:10:44,080 --> 00:10:47,120 FOR THOSE QUESTIONS AND 296 00:10:47,120 --> 00:10:48,360 TECHNOLOGIES WE THINK ABOUT 297 00:10:48,360 --> 00:10:50,080 CONSULTING WITH STAKEHOLDERS TO 298 00:10:50,080 --> 00:10:53,800 DISCUSS AND ASSESS VALUE OF AND 299 00:10:53,800 --> 00:10:54,400 POTENTIAL IMPLICATIONS FOR 300 00:10:54,400 --> 00:10:57,040 INDIVIDUAL'S GROUPS AND 301 00:10:57,040 --> 00:10:57,640 SOCIET 302 00:10:57,640 --> 00:10:58,400 SOCIETIES. THERE ARE BENEFIT 303 00:10:58,400 --> 00:10:59,960 AND RISKS TO HAVING THIS DATA 304 00:10:59,960 --> 00:11:01,600 ABOUT INDIVIDUALS USED IN 305 00:11:01,600 --> 00:11:02,640 RESEARCH, OF COURSE. 306 00:11:02,640 --> 00:11:05,040 THIS IS A TWO-PART CHARGE THAT 307 00:11:05,040 --> 00:11:08,440 WAS GIVEN TO THE COMMITTEE. 308 00:11:08,440 --> 00:11:11,640 NEXT SLIDE, PLEASE. 309 00:11:11,640 --> 00:11:14,760 WE -- THE -- THE NEXTRAC STOOD 310 00:11:14,760 --> 00:11:16,680 UP TO LOOK AT THIS CHARGE. A 311 00:11:16,680 --> 00:11:17,560 WORKING GROUP WAS ESTABLISHED TO 312 00:11:17,560 --> 00:11:20,920 START TO WORK ON THIS. 313 00:11:20,920 --> 00:11:24,720 AND THESE -- THE IDEAS AND DRAFT 314 00:11:24,720 --> 00:11:26,000 RECOMMENDATIONS THAT THE WORKING 315 00:11:26,000 --> 00:11:28,320 GROUP COMES UP WITH WILL GO 316 00:11:28,320 --> 00:11:29,960 FORWARD TO THE FULL COMMITTEE. 317 00:11:29,960 --> 00:11:31,800 BUT, FOR THE FIRST PART OF THE 318 00:11:31,800 --> 00:11:34,560 CHARGE, WHICH WAS REALLY ABOUT 319 00:11:34,560 --> 00:11:35,800 DEFINING AND CHARACTERIZING 320 00:11:35,800 --> 00:11:37,880 TYPES OF RESEARCH QUESTIONS WAS 321 00:11:37,880 --> 00:11:40,520 REALLY ADDRESSED TO A LARGE PART 322 00:11:40,520 --> 00:11:42,840 IN THE -- THROUGH A MEETING HELD 323 00:11:42,840 --> 00:11:45,040 LAST SUMMER WITH THE COMMITTEE. 324 00:11:45,040 --> 00:11:46,720 AND REALLY FOR THE SECOND PART 325 00:11:46,720 --> 00:11:48,760 OF THE CHARGE, THAT IS WHAT WE 326 00:11:48,760 --> 00:11:50,720 ARE HERE TO TALK ABOUT TODAY. 327 00:11:50,720 --> 00:11:53,280 THIS WORKSHOP WILL HELP INFORM 328 00:11:53,280 --> 00:11:54,480 DELIBERATIONS BY THE COMMITTEE 329 00:11:54,480 --> 00:11:57,680 TO THINK ABOUT, YOU KNOW, 330 00:11:57,680 --> 00:11:58,320 CONSULTING WITH STAKEHOLDERS TO 331 00:11:58,320 --> 00:12:00,040 DISCUSS THE IMPLICATIONS AND 332 00:12:00,040 --> 00:12:01,640 THAT THE WORKING GROUP SHOULD 333 00:12:01,640 --> 00:12:03,160 CONVENE CONSULTATIONS WITH ANY 334 00:12:03,160 --> 00:12:04,920 NUMBER OF COMMUNITIES THAT MIGHT 335 00:12:04,920 --> 00:12:07,880 BE IMPACTED INCLUDING BUT NOT 336 00:12:07,880 --> 00:12:10,600 LIMITED TO RESEARCH PARTICIPANTS 337 00:12:10,600 --> 00:12:14,160 AND PATIENT GROUPS AND EDGE 338 00:12:14,160 --> 00:12:20,360 CISTS AND PRIVACY EXPERTS AND 339 00:12:20,360 --> 00:12:22,360 THEY HAVE BEEN PART OF COMMUNITY 340 00:12:22,360 --> 00:12:26,000 CONVERSATIONS IN THE LAST FEW 341 00:12:26,000 --> 00:12:32,680 MONTHS. NEXT SLIDE, PLEASETHICS 342 00:12:32,680 --> 00:12:36,040 AND PRIVACY EXPERTS AND THEY 343 00:12:36,040 --> 00:12:36,600 HAVE BEEN PART OF COMMUNITY 344 00:12:36,600 --> 00:12:37,200 CONVERSATIONS IN THE LAST FEW 345 00:12:37,200 --> 00:12:37,800 MONTHS. NEXT SLIDE, PLEASE. 346 00:12:37,800 --> 00:12:38,440 WE HAVE LEARNED HOW IMPORTANT IT 347 00:12:38,440 --> 00:12:40,080 IS TO CULTIVATE TRUST-BASED 348 00:12:40,080 --> 00:12:41,160 PARTNERSHIPS WITH COMMUNITIES 349 00:12:41,160 --> 00:12:43,080 AND INSTITUTIONS AND WORKING 350 00:12:43,080 --> 00:12:44,360 WITH THEM TO BRING IN 351 00:12:44,360 --> 00:12:46,000 PARTICIPANTS IN WAYS THAT MAKES 352 00:12:46,000 --> 00:12:48,040 SENSE FOR THEM AND COMMUNITIES 353 00:12:48,040 --> 00:12:49,000 ADDRESSING QUESTIONS IMPORTANT 354 00:12:49,000 --> 00:12:51,760 TO THEM AND GIVING THEM 355 00:12:51,760 --> 00:12:54,400 SOMETHING EXTREMELY VALUABLE 356 00:12:54,400 --> 00:12:56,120 FROM THAT INTERACTION AND 357 00:12:56,120 --> 00:12:57,880 DEVELOPING BIDIRECTIONAL 358 00:12:57,880 --> 00:12:59,960 ENGAGEMENT THROUGH EFFORTS IS 359 00:12:59,960 --> 00:13:01,680 IMPORTANT AND TO ABSOLUTE ENSURE 360 00:13:01,680 --> 00:13:03,520 THAT FACILITATION HAPPENS WITH 361 00:13:03,520 --> 00:13:06,840 OPEN MIND, RESPECT, AND 362 00:13:06,840 --> 00:13:08,480 HUMILITY. PEOPLE ARE COMING IN 363 00:13:08,480 --> 00:13:11,280 AS EXPERTS ABOUT HEALTH AND HOW 364 00:13:11,280 --> 00:13:13,960 THEY WANT DATE AAH TO BE USED 365 00:13:13,960 --> 00:13:16,200 AND IS IMPORTANT TO APPROACH 366 00:13:16,200 --> 00:13:18,400 CONVERSATIONS IN THAT WAY AND 367 00:13:18,400 --> 00:13:19,120 PLAN PROSPECTIVELY FOR THINKING 368 00:13:19,120 --> 00:13:20,960 ABOUT HOW TO BUILD A 369 00:13:20,960 --> 00:13:22,520 RELATIONSHIP WITH COMMUNITIES 370 00:13:22,520 --> 00:13:24,680 HAVING THIS BE AN ONGOING 371 00:13:24,680 --> 00:13:25,120 DIALOGUE. 372 00:13:25,120 --> 00:13:26,240 NEXT SLIDE, PLEASE. 373 00:13:26,240 --> 00:13:29,680 AND SO I REALLY WANT TO THANK 374 00:13:29,680 --> 00:13:36,320 OUR SCLEBT FAS -- EXCELLENT 375 00:13:36,320 --> 00:13:37,320 FACILITATORS AND COLLABORATORS 376 00:13:37,320 --> 00:13:43,760 THAT WILL BE PART OF THE PANEL 377 00:13:43,760 --> 00:13:44,280 DISCUSSIONS FROM PYXIS. 378 00:13:44,280 --> 00:13:45,240 >>PARTICIPANT: NERS TO TALK 379 00:13:45,240 --> 00:13:46,400 ABOUT IMPORTANT ISSUES THROUGH 380 00:13:46,400 --> 00:13:49,800 COMMUNITY CONVERSATIONS. 381 00:13:49,800 --> 00:14:00,160 NEXT SLIDE, PLEASE. 382 00:14:07,400 --> 00:14:07,960 SOME RESEARCH QUESTIONS I NOTED 383 00:14:07,960 --> 00:14:08,640 WERE DEVELOPED IN THE FIRST PART 384 00:14:08,640 --> 00:14:10,040 OF THE CHARGE WERE TRANSLATED 385 00:14:10,040 --> 00:14:13,120 INTO CASE STUDIES TO FACILITATE 386 00:14:13,120 --> 00:14:15,120 DIALOGUE AND DISCUSSION AND CASE 387 00:14:15,120 --> 00:14:16,560 STUDIES EVOLVED OVER TIME AS WE 388 00:14:16,560 --> 00:14:18,520 LEARNED FROM CONVERSATIONS AND 389 00:14:18,520 --> 00:14:20,200 FIGURED OUT WHAT RESONATED AND 390 00:14:20,200 --> 00:14:21,760 WHAT WAS WORKING AND WHAT COULD 391 00:14:21,760 --> 00:14:23,200 BE IMPROVED. 392 00:14:23,200 --> 00:14:26,000 YOU WILL SEE THROUGH LOTS OF THE 393 00:14:26,000 --> 00:14:27,800 CONVERSATIONS TODAY AND IN 394 00:14:27,800 --> 00:14:29,120 MATERIALS PUT OUT IN ASSOCIATION 395 00:14:29,120 --> 00:14:33,520 WITH THE MEETING THAT, YOU KNOW, 396 00:14:33,520 --> 00:14:43,320 WE AND PYXIS AND NEXTRAC WORKING 397 00:14:43,320 --> 00:14:44,800 GROUP AND DISCUSSIONS AND FOR 398 00:14:44,800 --> 00:14:47,480 PURPOSES TO IDENTIFY COMMUNITY 399 00:14:47,480 --> 00:14:48,120 CONVERSATION PARTICIPANTS HAS 400 00:14:48,120 --> 00:14:50,560 BEEN REMOVED AND WANTED TO NOTE 401 00:14:50,560 --> 00:14:50,760 THAT. 402 00:14:50,760 --> 00:14:52,520 NEXT SLIDE, PLEASE. 403 00:14:52,520 --> 00:14:54,400 AGAIN, I JUST REALLY WANT TO 404 00:14:54,400 --> 00:14:56,120 TAKE THIS TIME TO THANK ALL OF 405 00:14:56,120 --> 00:14:57,960 YOU WHO ARE GATHERED HERE TODAY 406 00:14:57,960 --> 00:14:59,720 TO GATHER ALL THOSE WHO ARE PART 407 00:14:59,720 --> 00:15:04,440 OF COMMUNITY CONVERSATIONS AND 408 00:15:04,440 --> 00:15:06,640 PYXIS AND PAL AIDIAN PARTNERS IN 409 00:15:06,640 --> 00:15:10,320 THIS AND NEXTRAC COMMITTEE AND 410 00:15:10,320 --> 00:15:10,880 WORKING GROUP MEMBERS AND 411 00:15:10,880 --> 00:15:13,960 SCIENCE WRITERS PROVIDING 412 00:15:13,960 --> 00:15:15,880 LONLIST CAL SUPPORT EFFORTS FOR 413 00:15:15,880 --> 00:15:18,320 THIS HAS BEEN A ROBUST AND 414 00:15:18,320 --> 00:15:19,320 EXCITING PROCESS THAT HAS BEEN 415 00:15:19,320 --> 00:15:20,800 DONE IN COLLABORATION WITH A 416 00:15:20,800 --> 00:15:24,840 HUGE NUMBER OF PEOPLE AND I WANT 417 00:15:24,840 --> 00:15:33,840 TO REALLY THANK EVERYBODY. 418 00:15:33,840 --> 00:15:36,960 I'LL TURN IT TO CINNAMON BLOSS 419 00:15:36,960 --> 00:15:38,440 WHO IS THE HOST HERE AT UCSD. 420 00:15:38,440 --> 00:15:40,000 >>GOOD MORNING, EVERYBODY. 421 00:15:40,000 --> 00:15:42,800 THANK YOU SO MUCH, JESSICA, FOR 422 00:15:42,800 --> 00:15:45,880 THAT WONDERFUL SETUP FOR OUR 423 00:15:45,880 --> 00:15:46,080 DAY. 424 00:15:46,080 --> 00:15:48,200 I'M CINNAMON BLOSS AND I'M A 425 00:15:48,200 --> 00:15:51,360 FACULTY MEMBER AT UCSD AND SERVE 426 00:15:51,360 --> 00:15:52,880 AS CHAIR OF NOVEL AND 427 00:15:52,880 --> 00:15:54,160 EXCEPTIONAL TECHNOLOGY AND 428 00:15:54,160 --> 00:15:55,360 RESEARCH ADVISORY COMMITTEE AND 429 00:15:55,360 --> 00:15:58,000 WHAT WE LIKE TO REFER TO AS 430 00:15:58,000 --> 00:15:59,560 NEXTRAC AND WOULD LIKE TO 431 00:15:59,560 --> 00:16:02,960 WELCOME YOU ALL TO SAN DIEGO AND 432 00:16:02,960 --> 00:16:04,000 TO THE UNIVERSITY OF CALIFORNIA, 433 00:16:04,000 --> 00:16:05,880 SAN DIEGO. YOU CAN SEE ON THE 434 00:16:05,880 --> 00:16:07,880 SLIDE THE FULL ROSTER OF OUR 435 00:16:07,880 --> 00:16:09,160 MEMBERS. THESE INDIVIDUALS, 436 00:16:09,160 --> 00:16:11,680 SOME OF WHOM ARE HERE TODAY, ARE 437 00:16:11,680 --> 00:16:13,680 AFFILIATED WITH A WIDE VARIETY 438 00:16:13,680 --> 00:16:16,000 INSTITUTIONS AND UNIVERSITIES 439 00:16:16,000 --> 00:16:18,400 ACROSS THE COUNTRY. NEXT SLIDE, 440 00:16:18,400 --> 00:16:18,720 PLEASE. 441 00:16:18,720 --> 00:16:20,680 JUST FOR A MOMENT, I WOULD LIKE 442 00:16:20,680 --> 00:16:23,960 TO ADDRESS WHY WE THINK NEXTRAC 443 00:16:23,960 --> 00:16:25,800 IS SORT OF WELL-POSITIONED TO 444 00:16:25,800 --> 00:16:27,760 TAKE ON THE CHARGE DESCRIBED BY 445 00:16:27,760 --> 00:16:30,160 JESSICA IN THE PREVIOUS TALK. 446 00:16:30,160 --> 00:16:32,600 FIRST OF ALL, WHEN NEXTRAC WAS 447 00:16:32,600 --> 00:16:37,040 SORT OF IMAGINED, IT WAS SEEN AS 448 00:16:37,040 --> 00:16:39,960 A PUBLIC FORUM AT ITS CORE FOR 449 00:16:39,960 --> 00:16:42,480 DISCUSSION OF SCIENTIFIC SAFETY 450 00:16:42,480 --> 00:16:46,960 AND ETHICAL ISSUES ASSOCIATED 451 00:16:46,960 --> 00:16:49,680 WITH EMERGING AND BIOMEDICAL 452 00:16:49,680 --> 00:16:50,040 TECHNOLOGIES. 453 00:16:50,040 --> 00:16:52,200 WE CONCEPTUALIZE PUBLIC 454 00:16:52,200 --> 00:16:53,560 DELIBERATION AND ENGAGEMENT 455 00:16:53,560 --> 00:16:56,000 BEING CENTRAL TO HOW WE 456 00:16:56,000 --> 00:16:58,520 DELIBERATE AND ADVISE NIH ON 457 00:16:58,520 --> 00:16:59,000 THESE ISSUES. 458 00:16:59,000 --> 00:17:00,760 NEXT SLIDE, PLEASE. 459 00:17:00,760 --> 00:17:02,720 SO, WHEN OUR COMMITTEE WAS 460 00:17:02,720 --> 00:17:05,200 FORMED IN 2019, WE WERE GIVEN 461 00:17:05,200 --> 00:17:08,400 TWO INITIAL CHARGES. 462 00:17:08,400 --> 00:17:12,640 THE FIRST ONE WAS TO CONSIDER 463 00:17:12,640 --> 00:17:15,040 AND SET UP A PROCESS HOW WE 464 00:17:15,040 --> 00:17:17,240 OPERATE AND HOW WE SELECT ISSUES 465 00:17:17,240 --> 00:17:18,480 FOR DELIBERATION AND WHAT TOOLS 466 00:17:18,480 --> 00:17:21,640 AND METHODS WE USE AND AS I 467 00:17:21,640 --> 00:17:24,040 MENTIONED, PUBLIC ENGAGEMENT WAS 468 00:17:24,040 --> 00:17:26,360 REALLY -- IS CONCEPTUALIZED AS A 469 00:17:26,360 --> 00:17:31,080 KEY CENTRAL WAY WE APPROACH OUR 470 00:17:31,080 --> 00:17:31,600 WORK. 471 00:17:31,600 --> 00:17:33,120 AT THIS TIME WE WERE CHARGED 472 00:17:33,120 --> 00:17:35,840 WITH FOCUSING AND HONING IN ON A 473 00:17:35,840 --> 00:17:37,360 SPECIFIC TECHNOLOGY KNOWN AS 474 00:17:37,360 --> 00:17:39,720 GENE DRIVE. FOR MANY MONTHS, WE 475 00:17:39,720 --> 00:17:41,880 DID A DEEP DIVE ON THIS 476 00:17:41,880 --> 00:17:43,720 PARTICULAR TECHNOLOGY PROVIDING 477 00:17:43,720 --> 00:17:45,360 RECOMMENDATIONS TO NIH AND HAD 478 00:17:45,360 --> 00:17:47,000 AN OPPORTUNITY TO REALLY 479 00:17:47,000 --> 00:17:48,640 LEVERAGE AND USE SOME OF THE 480 00:17:48,640 --> 00:17:52,320 PROCESS MEASURES OUTLINED IN OUR 481 00:17:52,320 --> 00:17:55,000 FRAMEWORK REPORT. NOW, WITH THE 482 00:17:55,000 --> 00:17:56,680 THIRD CHARGE THAT WAS JUST 483 00:17:56,680 --> 00:18:00,720 DESCRIBED, WE ARE TAKING A BROAD 484 00:18:00,720 --> 00:18:02,280 HORIZON-SCANNING VIEW OF THIS 485 00:18:02,280 --> 00:18:03,920 CRITICALLY IMPORTANT TOPIC OF 486 00:18:03,920 --> 00:18:06,600 DATA SCIENCE AND IN BIOMEDICAL 487 00:18:06,600 --> 00:18:07,680 RESEARCH AND GIVEN THE BREADTH 488 00:18:07,680 --> 00:18:10,240 OF THIS TOPIC AND WAY WE ARE 489 00:18:10,240 --> 00:18:11,560 APPROACHING IT, THIS THIRD 490 00:18:11,560 --> 00:18:13,840 CHARGE IS REALLY AN OPPORTUNITY 491 00:18:13,840 --> 00:18:15,800 ALSO TO INTEGRATE WHAT I THINK 492 00:18:15,800 --> 00:18:18,240 IS CORE TO OUR COMMITTEE AND 493 00:18:18,240 --> 00:18:22,520 INTEGRATE A ROBUST PUBLIC 494 00:18:22,520 --> 00:18:24,440 ENGAGEMENT APPROACH. 495 00:18:24,440 --> 00:18:26,160 SO, NEXT SLIDE, PLEASE. 496 00:18:26,160 --> 00:18:28,920 SO, I'M LOOKING FORWARD TO TODAY 497 00:18:28,920 --> 00:18:32,960 TO -- YOU KNOW, WE MADE CHOICES 498 00:18:32,960 --> 00:18:36,000 AS JESSICA MENTION THE PURSUING 499 00:18:36,000 --> 00:18:37,520 PUBLIC ENGAGEMENT COMPONENT FOR 500 00:18:37,520 --> 00:18:38,840 THIS CHARGE AND LOOKING FORWARD 501 00:18:38,840 --> 00:18:40,600 TODAY TO SORT OF HEARING AND 502 00:18:40,600 --> 00:18:42,800 REFLECTING ON THAT PROCESS AND 503 00:18:42,800 --> 00:18:44,120 HEARING FROM THE PEOPLE THAT 504 00:18:44,120 --> 00:18:46,960 HAVE GATHERED HERE TODAY. 505 00:18:46,960 --> 00:18:50,000 THEIR KIND OF CONTEXTUALIZATION 506 00:18:50,000 --> 00:18:52,160 OF WHAT WE HEARD. 507 00:18:52,160 --> 00:18:53,400 ALSO, TO IDENTIFY MAYBE 508 00:18:53,400 --> 00:18:55,840 STRENGTHS AND AREAS FOR 509 00:18:55,840 --> 00:18:57,400 IMPROVEMENT FOR FUTURE TOPICS 510 00:18:57,400 --> 00:18:59,880 THAT NIH MAY WANT ADVICE ON AND 511 00:18:59,880 --> 00:19:02,840 MAY SORT OF PITCH TO THE NEXTRAC 512 00:19:02,840 --> 00:19:06,160 TO WORK ON. SO, I'M REALLY 513 00:19:06,160 --> 00:19:08,080 LOOKING FORWARD TO THAT PROCESS. 514 00:19:08,080 --> 00:19:09,880 THANK YOU ALL FOR BEING HERE 515 00:19:09,880 --> 00:19:10,120 TODAY. 516 00:19:10,120 --> 00:19:12,000 NEXT SLIDE, PLEASE. 517 00:19:12,000 --> 00:19:15,720 I JUST WANT TO ECHO JESSICA'S 518 00:19:15,720 --> 00:19:20,480 THANKS TO PYXIS PAL AID YUM AND 519 00:19:20,480 --> 00:19:22,000 WORKING GROUP MEMBERS AND THOSE 520 00:19:22,000 --> 00:19:23,000 GATHERED HERE TODAY AND THOSE 521 00:19:23,000 --> 00:19:25,480 TUNING IN ONLINE AS WELL. 522 00:19:25,480 --> 00:19:28,000 THANKS SO MUCH. NEXT SLIDE, 523 00:19:28,000 --> 00:19:28,240 PLEASE. 524 00:19:28,240 --> 00:19:30,800 ALL RIGHT. NOW, I WILL TAKE THE 525 00:19:30,800 --> 00:19:36,800 OPPORTUNITY TO TURN THIS OVER TO 526 00:19:36,800 --> 00:19:45,800 PILAR OSSORIO AND SACHIN 527 00:19:45,800 --> 00:19:47,240 KHETERPAL. I WILL TURN IT OVER 528 00:19:47,240 --> 00:19:48,560 TO THEM TO REALLY SET THE STAGE 529 00:19:48,560 --> 00:19:52,800 FOR THE REST OF THE DAY. THANK 530 00:19:52,800 --> 00:20:02,920 YOU. 531 00:20:12,360 --> 00:20:15,240 >>THANK YOU TO KRINL AMONDAY 532 00:20:15,240 --> 00:20:16,600 AND JESSICA FOR KICKING US OFF 533 00:20:16,600 --> 00:20:18,160 HERE TODAY. I WILL TELL YOU 534 00:20:18,160 --> 00:20:19,480 WHAT THE WORKING GROUP HAS DONE 535 00:20:19,480 --> 00:20:22,560 SO FAR. THIS, HERE YOU SEE THE 536 00:20:22,560 --> 00:20:24,400 MEMBERS OF THE WORKING GROUP. 537 00:20:24,400 --> 00:20:28,040 SOME ARE FROM NEXTRAC AND SOME 538 00:20:28,040 --> 00:20:38,680 ARE NEXT SLIDE, PLEASE. 539 00:20:39,800 --> 00:20:40,440 WE HAVE TWO SETS OF QUESTIONS. 540 00:20:40,440 --> 00:20:42,120 FIRST, TO DEFINE AND 541 00:20:42,120 --> 00:20:43,280 CHARACTERIZE TYPES OF RESEARCH 542 00:20:43,280 --> 00:20:45,080 QUESTIONS THAT NIH SHOULD BE 543 00:20:45,080 --> 00:20:46,920 THINKING ABOUT AS WE GO FORWARD 544 00:20:46,920 --> 00:20:49,000 WITH RESPECT TO DATA SCIENCE AND 545 00:20:49,000 --> 00:20:51,200 THE NEED FOR ETHICS AND 546 00:20:51,200 --> 00:20:52,440 GOVERNANCE AND SO FORTH. 547 00:20:52,440 --> 00:20:56,720 SO, WHEN WE THOUGHT ABOUT THIS, 548 00:20:56,720 --> 00:21:00,000 WE DIDN'T JUST THINK ABOUT SORT 549 00:21:00,000 --> 00:21:04,000 OF QUESTIONS BUT WHAT ARE THE 550 00:21:04,000 --> 00:21:05,480 THINGS ABOUT PARTICULAR RESEARCH 551 00:21:05,480 --> 00:21:07,120 QUESTIONS THAT WOULD MAKE THEM 552 00:21:07,120 --> 00:21:08,840 WORTHY OF MAYBE A SPECIAL LOOK 553 00:21:08,840 --> 00:21:13,320 WITH RESPECT TO GOVERNANCE AND 554 00:21:13,320 --> 00:21:15,400 ETH 555 00:21:15,400 --> 00:21:15,640 ETHICS. 556 00:21:15,640 --> 00:21:16,600 THEN OUR FIRST PART WAS COMING 557 00:21:16,600 --> 00:21:18,840 UP WITH IDEAS ABOUT THE RESEARCH 558 00:21:18,840 --> 00:21:21,800 THAT NIH NEED TODAY PAY 559 00:21:21,800 --> 00:21:23,080 ATTENTION TO AND SECOND PART AS 560 00:21:23,080 --> 00:21:27,960 YOU HEARD WAS TO CONSULT WITH 561 00:21:27,960 --> 00:21:30,280 VARIOUS STAKEHOLDERS. 562 00:21:30,280 --> 00:21:32,520 NEXT SLIDE, PLEASE. 563 00:21:32,520 --> 00:21:35,320 THIS IS OUR TIMELINE. WE SPENT 564 00:21:35,320 --> 00:21:37,400 A COUPLE MONTHS IDENTIFYING 565 00:21:37,400 --> 00:21:39,360 RELEVANT RESEARCH QUESTIONS AND 566 00:21:39,360 --> 00:21:42,640 KINDS OF THEMES AROUND THAT 567 00:21:42,640 --> 00:21:44,840 RESEARCH THAT WOULD RAISE 568 00:21:44,840 --> 00:21:47,200 PARTICULAR CONCERNS AND WE MET 569 00:21:47,200 --> 00:21:49,000 WITH LOTS OF SUBJECT MATTER 570 00:21:49,000 --> 00:21:50,840 EXPERTS AND MANY ON THE WORKING 571 00:21:50,840 --> 00:21:53,480 GROUP ARE PEOPLE WITH EXPERTISE 572 00:21:53,480 --> 00:21:59,560 IN ETHICS AND EVEN IN COMMUNITY 573 00:21:59,560 --> 00:22:01,280 ENGAGEMENT IN GOVERNANCE OF 574 00:22:01,280 --> 00:22:03,280 SCIENCE AND WE ARE NOT MOST OF 575 00:22:03,280 --> 00:22:04,800 US ALTHOUGH SOME ARE SUBJECT 576 00:22:04,800 --> 00:22:06,800 MATTER EXPERT BUZZ MOST ARE NOT 577 00:22:06,800 --> 00:22:08,360 DATA SCIENTISTS. WE MET WITH 578 00:22:08,360 --> 00:22:10,800 LOTS OF DATA SCIENTISTS TO HELP 579 00:22:10,800 --> 00:22:12,240 US UNDERSTAND THE LANDSCAPE FROM 580 00:22:12,240 --> 00:22:14,240 THEIR PERSPECTIVE AND HELP US 581 00:22:14,240 --> 00:22:18,400 UNDERSTAND TECHNOLOGIES BETTER. 582 00:22:18,400 --> 00:22:20,960 BEGINNING IN OCTOBER, WE BEGAN A 583 00:22:20,960 --> 00:22:23,560 SERIES WITH INCREDIBLE HELP OF 584 00:22:23,560 --> 00:22:25,920 PYXIS AND BEGAN A SERIES OF 585 00:22:25,920 --> 00:22:26,600 CONVERSATIONS WITH DIFFERENT 586 00:22:26,600 --> 00:22:28,080 COMMUNITIES YOU WILL HEAR MORE 587 00:22:28,080 --> 00:22:29,760 ABOUT THAT OR WITH INDIVIDUALS 588 00:22:29,760 --> 00:22:31,160 FROM DIFFERENT COMMUNITIES AND 589 00:22:31,160 --> 00:22:33,080 YOU WILL HEAR MORE ABOUT THOSE 590 00:22:33,080 --> 00:22:36,640 CONVERSATIONS AS WE GO 591 00:22:36,640 --> 00:22:37,920 THROUGHOUT THE DAY. 592 00:22:37,920 --> 00:22:40,920 SEVERAL OF US THROUGHOUT THE 593 00:22:40,920 --> 00:22:41,560 WORKING GROUP PARTICIPATED IN 594 00:22:41,560 --> 00:22:43,560 ONE OR MORE CONVERSATIONS AND WE 595 00:22:43,560 --> 00:22:45,480 ARE NOW GETTING INTO THE PHASE 596 00:22:45,480 --> 00:22:47,560 OF WRITING OUR REPORTS THAT IS 597 00:22:47,560 --> 00:22:49,640 WHAT WILL BE GOING ON AND 598 00:22:49,640 --> 00:22:52,880 FEEDBACK TODAY WILL HELP IN THAT 599 00:22:52,880 --> 00:22:53,560 REGARD. 600 00:22:53,560 --> 00:22:54,440 RIGHT? 601 00:22:54,440 --> 00:22:57,920 I THINK THAT THE REPORT SHOULD 602 00:22:57,920 --> 00:23:01,240 BE COMING OUT IN OR TOWARD THE 603 00:23:01,240 --> 00:23:04,560 END OF SUMMER AND NEXT SLIDE, 604 00:23:04,560 --> 00:23:04,960 PLEASE. 605 00:23:04,960 --> 00:23:07,920 >>IN THINKING ABOUT WHAT KINDS 606 00:23:07,920 --> 00:23:10,320 OF RESEARCH WOULD BENEFIT FROM 607 00:23:10,320 --> 00:23:12,560 ADDITIONAL LOOK BY NIH OR WHAT 608 00:23:12,560 --> 00:23:14,920 RESEARCH NIH HAS TO ANTICIPATE 609 00:23:14,920 --> 00:23:17,560 AND THINK ABOUT GOVERNING AND 610 00:23:17,560 --> 00:23:18,280 WORKING GROUP CAME UP WITH A 611 00:23:18,280 --> 00:23:23,040 NUMBER OF THEMES AND SOME DRAW 612 00:23:23,040 --> 00:23:24,240 CAREFULLY FROM NEXTRAC FRAMEWORK 613 00:23:24,240 --> 00:23:26,680 REPORT AND THINGS THAT IF 614 00:23:26,680 --> 00:23:28,480 RESEARCH INVOLVES AT LEAST SOME 615 00:23:28,480 --> 00:23:31,760 OF THESE CONSIDERATIONS, THEN IT 616 00:23:31,760 --> 00:23:34,840 MAY NEED ADDITIONAL GOVERNANCE 617 00:23:34,840 --> 00:23:36,440 OR WE NEED TO UNDERSTAND WHETHER 618 00:23:36,440 --> 00:23:39,680 OR NOT THAT RESEARCH MIGHT FALL 619 00:23:39,680 --> 00:23:42,640 THROUGH CRACKS OF EXISTING 620 00:23:42,640 --> 00:23:42,960 GOVERNANCE. 621 00:23:42,960 --> 00:23:48,800 I WON'T GO THROUGH ALL THESE. 622 00:23:48,800 --> 00:23:52,480 IF RESEARCH OR NEW USE OF DATA 623 00:23:52,480 --> 00:23:53,920 SCIENCE TECHNOLOGY RAISES 624 00:23:53,920 --> 00:23:58,040 PARTICULAR ISSUES AROUND SAY 625 00:23:58,040 --> 00:23:59,040 ACCUMULATING DATA THAT PEOPLE 626 00:23:59,040 --> 00:24:01,560 MIGHT THINK OF AS PARTICULARLY 627 00:24:01,560 --> 00:24:05,640 SENSITIVE OR USING NEW KINDS OF 628 00:24:05,640 --> 00:24:07,880 DATA THAT HAVE NOT BEEN REALLY 629 00:24:07,880 --> 00:24:09,600 USED IN BIOMEDICAL RESEARCH 630 00:24:09,600 --> 00:24:13,720 BEFORE ARE KINDS OF ISSUES WE 631 00:24:13,720 --> 00:24:16,480 THOUGHT MIGHT RAISE GOVERNANCE 632 00:24:16,480 --> 00:24:18,360 CONCERNS OR MIGHT BE BROUGHT TO 633 00:24:18,360 --> 00:24:21,480 NIH'S ATTENTION AND THOUGHT 634 00:24:21,480 --> 00:24:23,840 ABOUT NEXT SLIDE, PLEASE. 635 00:24:23,840 --> 00:24:27,840 WE ENDED UP BOILING DOWN ALL OUR 636 00:24:27,840 --> 00:24:29,000 RESEARCH QUESTIONS INTO THESE 637 00:24:29,000 --> 00:24:33,120 THREE MAJOR TOPICS. 638 00:24:33,120 --> 00:24:36,800 THEY INFORMED CASE STUDIES THAT 639 00:24:36,800 --> 00:24:38,920 WERE USED FOR PUBLIC 640 00:24:38,920 --> 00:24:42,720 CONVERSATIONS OR PUBLIC 641 00:24:42,720 --> 00:24:44,080 ENGAGEMENTS. 642 00:24:44,080 --> 00:24:50,240 ONE HAD TO DO WITH NOVELTY OF 643 00:24:50,240 --> 00:24:51,600 DATA AND IN PARTICULAR THINKING 644 00:24:51,600 --> 00:24:53,440 OF STUDIES AND RESEARCH 645 00:24:53,440 --> 00:24:55,480 QUESTIONS THAT WOULD BE 646 00:24:55,480 --> 00:24:58,800 ADDRESSED USING KINDS OF DATA 647 00:24:58,800 --> 00:24:59,520 THAT HISTORICALLY PEOPLE DON'T 648 00:24:59,520 --> 00:25:02,240 THINK OF AS HEALTH OR MEDICAL 649 00:25:02,240 --> 00:25:05,040 RELATED DATA. IF COMING FROM 650 00:25:05,040 --> 00:25:06,280 BIOMEDICAL RESEARCH OR 651 00:25:06,280 --> 00:25:07,880 ELECTRONIC HEALTH RECORDS PEOPLE 652 00:25:07,880 --> 00:25:10,080 UNDERSTAND IT AS HEALTH-RELATED 653 00:25:10,080 --> 00:25:12,160 DATA OR THOUGHT THEY WOULD. IF 654 00:25:12,160 --> 00:25:14,280 IT COMES FROM YOUR CREDIT AGENCY 655 00:25:14,280 --> 00:25:16,000 OR EVEN MAYBE YOUR WEARABLES OR 656 00:25:16,000 --> 00:25:17,840 LOTS OF OTHER PLACES THAT DATA 657 00:25:17,840 --> 00:25:20,000 FOR BIOMEDICAL RESEARCH COULD BE 658 00:25:20,000 --> 00:25:22,800 COMING THESE DAYS, WE THOUGHT 659 00:25:22,800 --> 00:25:23,840 THAT, THAT MIGHT RAISE 660 00:25:23,840 --> 00:25:27,200 ADDITIONAL QUESTIONS IN THE 661 00:25:27,200 --> 00:25:29,240 MINDS OF PEOPLE WHOSE DATA WE 662 00:25:29,240 --> 00:25:31,320 WOULD USE OR RESPECT TO THE FACT 663 00:25:31,320 --> 00:25:33,720 THAT, YOU KNOW, DIFRNL KINDS OF 664 00:25:33,720 --> 00:25:36,000 DATA GENERATED IN DIFFERENT 665 00:25:36,000 --> 00:25:37,320 CONTEXTS MIGHT HAVE DIFFERENT 666 00:25:37,320 --> 00:25:41,000 LEGAL REGIMES ASSOCIATED WITH 667 00:25:41,000 --> 00:25:42,200 THEM AND DIFFERENT SORT OF 668 00:25:42,200 --> 00:25:44,480 ETHICAL NORMS OR DATA COLLECTED 669 00:25:44,480 --> 00:25:47,200 IN CONSUMER CONTEXT AND THERE 670 00:25:47,200 --> 00:25:48,760 ARE DIFFICULT OR DIFFERENT NORMS 671 00:25:48,760 --> 00:25:51,560 AROUND DATA HISTORICALLY THAN 672 00:25:51,560 --> 00:25:53,200 THERE HAVE BEEN AROUND RESEARCH 673 00:25:53,200 --> 00:25:56,000 DATA AND THINK THAT AGGREGATING 674 00:25:56,000 --> 00:25:57,160 OR LINKING DIFFERENT DATA MIGHT 675 00:25:57,160 --> 00:25:58,720 RAISE NEW QUESTIONS OR QUESTIONS 676 00:25:58,720 --> 00:26:03,240 THAT NIH WILL NEED TO CONFRONT 677 00:26:03,240 --> 00:26:05,840 IN A MORE EXPLICIT WAY AND USE 678 00:26:05,840 --> 00:26:07,760 OF MORE ADVANCED COMPUTATIONAL 679 00:26:07,760 --> 00:26:10,800 ALGORITHMS AND MODELS THAT 680 00:26:10,800 --> 00:26:13,640 MACHINE LEARNING PRODUCED; 681 00:26:13,640 --> 00:26:15,320 RIGHT? THIS IS ANOTHER ISSUE 682 00:26:15,320 --> 00:26:17,400 BECAUSE OF COMPLEXITY AND 683 00:26:17,400 --> 00:26:19,520 SOMETIMES LACK OF TRANSPARENCY 684 00:26:19,520 --> 00:26:22,160 AND SO FORTH WE THOUGHT MIGHT 685 00:26:22,160 --> 00:26:23,720 RAISE ADDITIONAL ISSUES. 686 00:26:23,720 --> 00:26:25,920 FINALLY, AS I SAID, NOT JUST 687 00:26:25,920 --> 00:26:28,000 DIFFERENT KINDS OF DATA BUT 688 00:26:28,000 --> 00:26:30,320 SPECIFIC PROCESS OF LINKING DATA 689 00:26:30,320 --> 00:26:32,480 AND AGGREGATING DATA MEANS 690 00:26:32,480 --> 00:26:34,000 ADDING NEW PEOPLE'S DATA YOU TO 691 00:26:34,000 --> 00:26:36,640 THE DATA SET MAKING IT BIGGER IN 692 00:26:36,640 --> 00:26:38,800 THAT WAY AND LINKING DATA MEANS 693 00:26:38,800 --> 00:26:42,040 TAKING DATA SETS THAT INCLUDE 694 00:26:42,040 --> 00:26:44,080 THE SAME PERSON AND LINKING THAT 695 00:26:44,080 --> 00:26:45,840 PERSON'S DATA FROM TWO DIFFERENT 696 00:26:45,840 --> 00:26:47,280 DATA SETS TOGETHER SO THAT YOU 697 00:26:47,280 --> 00:26:49,560 ARE MAKING DATA ABOUT THEM 698 00:26:49,560 --> 00:26:51,560 HIGHER DIMENSIONAL; RIGHT? 699 00:26:51,560 --> 00:26:54,000 SO, THAT COMES WITH ITS OWN SET 700 00:26:54,000 --> 00:26:54,920 OF ISSUES. 701 00:26:54,920 --> 00:26:58,080 AND I HAVE TO SAY THAT THIS IS 702 00:26:58,080 --> 00:27:00,440 SOMETHING THAT IN MY OWN JUST 703 00:27:00,440 --> 00:27:04,560 QUICK KIND OF PAR USUAL OF THE 704 00:27:04,560 --> 00:27:06,680 ETHICS AND POLICY LITERATURE IS 705 00:27:06,680 --> 00:27:08,240 SOMETHING HAPPENING A LOT IN THE 706 00:27:08,240 --> 00:27:09,600 COMMERCIAL SPACES AND IS 707 00:27:09,600 --> 00:27:11,640 SOMETHING THAT RESEARCHERS ARE 708 00:27:11,640 --> 00:27:13,640 ALSO DOING AND YET THERE IS VERY 709 00:27:13,640 --> 00:27:15,560 LITTLE WRITTEN ABOUT IT FROM THE 710 00:27:15,560 --> 00:27:17,440 GOVERNANCE OR ETHICS PE 711 00:27:17,440 --> 00:27:19,280 SPECULATIVE. TO ME, THIS IS A 712 00:27:19,280 --> 00:27:21,400 SUPER INTERESTING TOPIC. I 713 00:27:21,400 --> 00:27:23,040 MEAN, THEY ARE ALL INTERESTING. 714 00:27:23,040 --> 00:27:25,920 BUT, ALL RIGHT. SO, NEXT SLIDE, 715 00:27:25,920 --> 00:27:28,240 PLEASE. I THINK I WILL HAND OFF 716 00:27:28,240 --> 00:27:30,280 TO SACHIN TO TALK ABOUT SORT OF 717 00:27:30,280 --> 00:27:35,440 OUR PUBLIC ENGAGEMENT AND WHAT 718 00:27:35,440 --> 00:27:39,600 WE WILL DO GOING FORWARD. THANK 719 00:27:39,600 --> 00:27:44,680 YOU. 720 00:27:44,680 --> 00:27:46,440 >>GOOD MORNING, EVERYBODY. 721 00:27:46,440 --> 00:27:48,000 THANK YOU ALL THOSE WHO HAVE 722 00:27:48,000 --> 00:27:51,680 COME BEFORE. SO, AS WE DISCUSS 723 00:27:51,680 --> 00:27:54,800 THE FIRST PART IS WHAT WE HAVE 724 00:27:54,800 --> 00:27:56,360 DONE CLASSICALLY IN THE 725 00:27:56,360 --> 00:27:58,280 BIOMEDICAL RESEARCH COMPLEX 726 00:27:58,280 --> 00:27:59,680 WHICH IS HELP OUT WITH 727 00:27:59,680 --> 00:28:01,000 SCIENTISTS AND TALK TO EACH 728 00:28:01,000 --> 00:28:03,320 OTHER AND CONVINCE EACH OTHER OF 729 00:28:03,320 --> 00:28:04,680 A PATHWAY. THIS GROUP IS TRYING 730 00:28:04,680 --> 00:28:07,360 TO GO TO THE STAKEHOLDER GROUP 731 00:28:07,360 --> 00:28:09,880 YOU SAW CHARGED TO US BY NIH 732 00:28:09,880 --> 00:28:11,360 RESEARCH PARTICIPANTS AND 733 00:28:11,360 --> 00:28:13,920 PATIENT GROUPS AND THOSE 734 00:28:13,920 --> 00:28:16,000 EXPERIENCING CHOICES AND THOSE 735 00:28:16,000 --> 00:28:17,440 THAT SHOULD INFORM GUIDELINES 736 00:28:17,440 --> 00:28:20,000 MAYBE ARE COMING FORWARD WITH. 737 00:28:20,000 --> 00:28:21,360 THIS IS A REALLY EXCITING 738 00:28:21,360 --> 00:28:22,600 OPPORTUNITY FOR US TO DO 739 00:28:22,600 --> 00:28:23,840 SOMETHING YOU TYPICALLY DON'T 740 00:28:23,840 --> 00:28:25,960 THINK OF WHEN THINKING OF DATA 741 00:28:25,960 --> 00:28:27,880 SCIENCE THAT IS GO TALK TO 742 00:28:27,880 --> 00:28:28,600 PARTICIPANTS PUTTING PEOPLE BACK 743 00:28:28,600 --> 00:28:31,920 IN DATA SCIENCE AND I HAVE AN 744 00:28:31,920 --> 00:28:35,280 ADVANCED SLIDE. LET ME DO THIS. 745 00:28:35,280 --> 00:28:39,680 I WILL GO TO THE NEXT SLIDE, 746 00:28:39,680 --> 00:28:40,160 PLEASE. 747 00:28:40,160 --> 00:28:42,760 SO, IN PHASE 2, WE COLLECTED 748 00:28:42,760 --> 00:28:44,200 INPUT NOT JUST FROM SCIENTISTS 749 00:28:44,200 --> 00:28:48,120 THAT WE ARE ALL PART OF AND WE 750 00:28:48,120 --> 00:28:50,560 ENJOY BUT IS I THINK DIFFERENT 751 00:28:50,560 --> 00:28:52,160 THAN THE CLASSIC PUTTING IT INTO 752 00:28:52,160 --> 00:28:54,040 THE FEDERAL ARE ENL STER THAT IS 753 00:28:54,040 --> 00:28:55,600 TAKING PEOPLE WHO DON'T READ THE 754 00:28:55,600 --> 00:28:58,680 FEDERAL REGISTER THAT IS OUR 755 00:28:58,680 --> 00:28:59,680 CONSTITUENTS AND RESEARCH 756 00:28:59,680 --> 00:29:01,360 PARTICIPATANT AND FOLKS THAT ARE 757 00:29:01,360 --> 00:29:05,400 GROUPED FOR STUDIES AND GO SPEAK 758 00:29:05,400 --> 00:29:07,120 WITH THEM AND EXCITING STUDY FOR 759 00:29:07,120 --> 00:29:10,520 US TO DO IT AS A DEDICATED TO 760 00:29:10,520 --> 00:29:12,800 FOCUS FOR THE ACTIVITY AND NOT 761 00:29:12,800 --> 00:29:14,000 SOMETHING WE MELD INTO ANOTHER 762 00:29:14,000 --> 00:29:15,040 PART THAT WE BROUGHT TOGETHER 763 00:29:15,040 --> 00:29:17,760 THAT HAD A FOCUS OF 764 00:29:17,760 --> 00:29:20,000 SEVERAL-MONTH EFFORT SPEAKING TO 765 00:29:20,000 --> 00:29:23,200 PARTICIPANT AND DEBRIEFED 766 00:29:23,200 --> 00:29:24,640 INTERACTIONS INFORMING OUR NEXT 767 00:29:24,640 --> 00:29:25,640 INTERACTION. NEXT SLIDE, 768 00:29:25,640 --> 00:29:26,160 PLEASE. 769 00:29:26,160 --> 00:29:28,640 FORMS ARE A MIXTURE OF DIFFERENT 770 00:29:28,640 --> 00:29:31,680 MEDIA AS WELL. 6 IN-PERSON 771 00:29:31,680 --> 00:29:33,280 EVENT AND SEVERAL VIRTUAL EVENTS 772 00:29:33,280 --> 00:29:37,680 AS WELL. 6 IN-PERSON EVENTS, 773 00:29:37,680 --> 00:29:43,880 TWO IN NEW YORK ONE NEXT LMOSA 774 00:29:43,880 --> 00:29:48,000 COLORADO AND ONE IN JACKSON 775 00:29:48,000 --> 00:29:50,040 MISSISSIPPI AND ONE IN MICHIGAN 776 00:29:50,040 --> 00:29:52,640 AND VIRTUAL WEBINARS COMING TO 777 00:29:52,640 --> 00:29:54,800 REALITY THAT PARTICIPATANT AND 778 00:29:54,800 --> 00:29:56,600 FOLKS TRYING TO LEARN FROM CAN'T 779 00:29:56,600 --> 00:29:57,880 DRIVE NECESSARILY TO IN-PERSON 780 00:29:57,880 --> 00:29:59,320 EVENT AND LAST COUPLE YEARS 781 00:29:59,320 --> 00:30:02,440 TAUGHT US CONCEPT OF IN-PERSON 782 00:30:02,440 --> 00:30:04,680 EVENT HAS CERTAIN ADVANTAGES WE 783 00:30:04,680 --> 00:30:07,240 ARE EXPERIENCING TODAY BUT ARE 784 00:30:07,240 --> 00:30:09,080 INCLUSIVITY AND ACCESS ISSUES 785 00:30:09,080 --> 00:30:11,280 THAT PRESENT AS CHALLENGING TO 786 00:30:11,280 --> 00:30:12,360 DRIVE SOMEWHERE AND SEVERAL 787 00:30:12,360 --> 00:30:14,080 VIRTUAL EVENTS ADDRESSING 788 00:30:14,080 --> 00:30:16,120 COMMUNITIES POTENTIALLY DUE TO 789 00:30:16,120 --> 00:30:18,520 GEOGRAPHICAL ISSUES CAN'T ATTEND 790 00:30:18,520 --> 00:30:21,560 AN IN-PERSON EVENT. NEXT SLIDE, 791 00:30:21,560 --> 00:30:21,880 PLEASE. 792 00:30:21,880 --> 00:30:24,040 THIS IS INVOLVED ONCE AGAIN A 793 00:30:24,040 --> 00:30:28,000 LOT OF WORK FROM PYXIS AND 794 00:30:28,000 --> 00:30:32,000 PARTNERS AND CONSISTENCY OFFERED 795 00:30:32,000 --> 00:30:34,760 ACROSS EVENT AND EXPERTISE 796 00:30:34,760 --> 00:30:38,840 PARTICIPANT ENGAGEMENT IS IT 797 00:30:38,840 --> 00:30:41,200 ITSELF AND WHAT THEY BROUGHT TO 798 00:30:41,200 --> 00:30:43,640 US. NEXT SLIDE. WAY THEY WERE 799 00:30:43,640 --> 00:30:45,680 ARRANGED IS IN-PERSON EVENTS 800 00:30:45,680 --> 00:30:48,000 WERE 4-HOUR EVENTS REACHING OUT 801 00:30:48,000 --> 00:30:50,440 TO COMMUNITY LEADERS IDENTIFYING 802 00:30:50,440 --> 00:30:51,640 PARTICIPANTS THEY FELT WERE 803 00:30:51,640 --> 00:30:52,920 REASONABLE AND THEY AS TRUSTED 804 00:30:52,920 --> 00:30:55,120 COMMUNITY LEADERS HAD DIFFERENT 805 00:30:55,120 --> 00:30:56,640 RELATIONSHIPS WITH POTENTIAL 806 00:30:56,640 --> 00:30:57,680 PARTICIPANT AND THEY WOULD 807 00:30:57,680 --> 00:30:59,680 INVITE THEM AND BRING THEM IN IN 808 00:30:59,680 --> 00:31:02,120 TRUST ENVIRONMENT AND PYXIS 809 00:31:02,120 --> 00:31:03,880 WOULD HELP COORDINATE LOGISTICS 810 00:31:03,880 --> 00:31:06,240 OF IT AND WE TRIED TO LEARN FROM 811 00:31:06,240 --> 00:31:08,480 ONE TO ANOTHER AND HAVE 812 00:31:08,480 --> 00:31:09,720 CONSISTENCY AND SPECIFIC CASE 813 00:31:09,720 --> 00:31:11,600 STUDIES THAT EACH OF THE 814 00:31:11,600 --> 00:31:13,080 PARTICIPANTS WERE ORIENTED TO 815 00:31:13,080 --> 00:31:15,520 AND HAD PRE-MEETINGS WITH 816 00:31:15,520 --> 00:31:19,160 POTENTIAL PARTICIPANTS AND 817 00:31:19,160 --> 00:31:21,040 WEBINARS TO DISCUSS AND CAME IN 818 00:31:21,040 --> 00:31:22,480 WITH PARTICULAR FRAME OF MIND 819 00:31:22,480 --> 00:31:24,440 AND WITH RECRUITMENT EFFORTS TO 820 00:31:24,440 --> 00:31:26,960 GET IN A COMMUNITY DIVERSE AND 821 00:31:26,960 --> 00:31:28,560 REPRESENTATIVE SAMPLE OF FOLKS 822 00:31:28,560 --> 00:31:30,120 THAT COULD JOIN US. 823 00:31:30,120 --> 00:31:33,240 THESE WERE EXCEPTIONAL EVENT AND 824 00:31:33,240 --> 00:31:34,360 THOSE WITH OPPORTUNITY TO ATTEND 825 00:31:34,360 --> 00:31:37,800 THEM REALLY ENJOYED THEM. 826 00:31:37,800 --> 00:31:39,800 WHAT WE DID WAS IN CASE STUDIES 827 00:31:39,800 --> 00:31:41,960 WE HAD SEVERAL DIFFERENT TOPICS. 828 00:31:41,960 --> 00:31:43,840 EACH TOPIC HAD SPECIFIC CASE AND 829 00:31:43,840 --> 00:31:46,240 EXAMPLE YOU SEE HERE TOPIC 1 IS 830 00:31:46,240 --> 00:31:47,600 REGARDING HOW FOLKS WOULD FEEL 831 00:31:47,600 --> 00:31:50,320 ABOUT THE CONCEPT OF NEW DATA 832 00:31:50,320 --> 00:31:54,160 TYPES AND CENSORS FOR EXAMPLE 833 00:31:54,160 --> 00:31:56,080 WEARABLE IDENTIFYING CARDIAC 834 00:31:56,080 --> 00:31:58,920 SIGNALS IDENTIFYING POTENTIAL 835 00:31:58,920 --> 00:32:01,120 RISKS FOR CARDIAC DISEASE AND 836 00:32:01,120 --> 00:32:04,760 EVENT AND HOW FOLKS WOULD FEEL 837 00:32:04,760 --> 00:32:07,040 ABOUT AGO DWAETING DATA AND 838 00:32:07,040 --> 00:32:09,800 SHARING THAT. WHAT PRESENTED A 839 00:32:09,800 --> 00:32:12,400 LITTLE MORE CHALLENGE IS INSTEAD 840 00:32:12,400 --> 00:32:13,080 OF IT BEING YOUR PERSONAL ADVICE 841 00:32:13,080 --> 00:32:15,240 HOW ABOUT AN OLDER ADULT OR 842 00:32:15,240 --> 00:32:17,720 FAMILY MEMBER WHO IS LIVING AT 843 00:32:17,720 --> 00:32:21,880 HOME AND MIGHT NEED ASSISTANCE 844 00:32:21,880 --> 00:32:24,000 OCCASIONALLY AND HOW WE WOULD 845 00:32:24,000 --> 00:32:25,640 CONSIDER EVASIVENESS AND 846 00:32:25,640 --> 00:32:27,160 ASSISTNESS THAT DEVICE COULD 847 00:32:27,160 --> 00:32:28,680 PROVIDE IN THEIR HOME AND WAS 848 00:32:28,680 --> 00:32:30,040 EXCITING DIALOGUE TO HAVE I WILL 849 00:32:30,040 --> 00:32:32,360 BE HONEST. INTERESTING 850 00:32:32,360 --> 00:32:33,920 PERSPECTIVES WERE OFFERED THERE 851 00:32:33,920 --> 00:32:35,960 AND WE HAD ANOTHER MORE BROAD 852 00:32:35,960 --> 00:32:38,080 USE CASE THAT WAS RATHER THAN 853 00:32:38,080 --> 00:32:40,000 FOCUSING ON INDIVIDUALS ONE THAT 854 00:32:40,000 --> 00:32:43,200 FOCUSED ON COMMUNITIES IN 855 00:32:43,200 --> 00:32:47,480 GENERAL. THIS WAS A SOCIAL 856 00:32:47,480 --> 00:32:49,640 MEDIA CONCEPT ALGORITHMS TO 857 00:32:49,640 --> 00:32:52,440 DETECT LOOKING AT SOCIAL MEDIA 858 00:32:52,440 --> 00:32:54,800 POSTS TO BE AT RISK FOR SUICIDE 859 00:32:54,800 --> 00:32:57,080 OR SELF-HARM AND BENEFITS RISK 860 00:32:57,080 --> 00:32:58,920 OF ALGORITHM BEING DEVELOPED AND 861 00:32:58,920 --> 00:33:00,800 DEPLOYED AND DOING RESEARCH ON 862 00:33:00,800 --> 00:33:02,640 THAT TYPE OF ALGORITHM ENTIRE 863 00:33:02,640 --> 00:33:04,720 CONCEPT WAS GOING FROM THE SELF 864 00:33:04,720 --> 00:33:05,720 AND INDIVIDUAL TO COMMUNITIES 865 00:33:05,720 --> 00:33:08,200 AND IMPACT WE COULD HAVE ON 866 00:33:08,200 --> 00:33:09,800 COMMUNITIES AT LARGE AND KNOWING 867 00:33:09,800 --> 00:33:11,160 IT TAKES COMMUNITY OF SOCIAL 868 00:33:11,160 --> 00:33:13,600 MEDIA INTERACTIONS TO ACTUALLY 869 00:33:13,600 --> 00:33:14,840 MAKE PROGRESS THERE AND FINAL 870 00:33:14,840 --> 00:33:17,200 USE CASE SCENARIO THAT WAS 871 00:33:17,200 --> 00:33:18,800 REALLY CORE OF DATA LINKAGE 872 00:33:18,800 --> 00:33:20,400 QUESTION WE DISCUSSED THAT WAS 873 00:33:20,400 --> 00:33:22,480 IF A RESEARCH PARTICIPANT SIGNS 874 00:33:22,480 --> 00:33:24,120 UP FOR A PARTICULAR STUDY AND IT 875 00:33:24,120 --> 00:33:26,760 THAT STUDY INCLUDES THE ABILITY 876 00:33:26,760 --> 00:33:28,680 TO LINK DATA TO OTHER PROJECTS 877 00:33:28,680 --> 00:33:30,680 AND ANOTHER PROJECT CONTACTS 878 00:33:30,680 --> 00:33:32,080 THAT PARTICIPANT, HOW WOULD THEY 879 00:33:32,080 --> 00:33:33,040 FEEL ABOUT THAT OR EVEN 880 00:33:33,040 --> 00:33:34,920 UNDERSTAND THAT IS HOW THEY WERE 881 00:33:34,920 --> 00:33:36,400 CONTACTED LIKE WHEN YOU GET A 882 00:33:36,400 --> 00:33:39,000 PHONE CALL FROM TELEMARKETER HOW 883 00:33:39,000 --> 00:33:42,360 DO YOU KNOW I JUST BOUGHT A TOY 884 00:33:42,360 --> 00:33:43,960 OATA AND WAIT A SECOND THAT 885 00:33:43,960 --> 00:33:46,760 CONCEPT OF BIOMEDICAL RESEARCH 886 00:33:46,760 --> 00:33:48,080 EXPERIENCE THAT WE ALL HAVE HAD 887 00:33:48,080 --> 00:33:53,800 SITTING AT HOME. NEXT SLIDE, 888 00:33:53,800 --> 00:33:56,040 PLEASE PROCESS GOING THROUGH 889 00:33:56,040 --> 00:33:58,880 CASE STUDIES AND SOME QUESTIONS 890 00:33:58,880 --> 00:34:01,000 WE POKED AND PRODDED TO BRING 891 00:34:01,000 --> 00:34:02,360 THINGS UP AND WE LET PEOPLE 892 00:34:02,360 --> 00:34:04,960 REACT TO IT GIVING OPEN-ENDED 893 00:34:04,960 --> 00:34:07,160 ANSWERS SO OUR DESIRES ARE NOT 894 00:34:07,160 --> 00:34:08,000 DRIVE WILLING WITH WHAT THEY 895 00:34:08,000 --> 00:34:10,680 SPOKE WITH. FIRST, PEOPLE GIVE 896 00:34:10,680 --> 00:34:12,400 GENERAL REACTIONS AND OPEN-ENDED 897 00:34:12,400 --> 00:34:14,000 SET OF QUESTIONS BECAUSE 898 00:34:14,000 --> 00:34:15,120 COMMUNITIES WERE LED BY 899 00:34:15,120 --> 00:34:16,640 COMMUNITY LEADERS AND 900 00:34:16,640 --> 00:34:17,360 PARTICIPANTS WERE THERE AND 901 00:34:17,360 --> 00:34:20,560 THERE IS TRUST AND NEAT TO SEE 902 00:34:20,560 --> 00:34:22,800 DIFFERENT PARTICIPANTS MAY NOTE 903 00:34:22,800 --> 00:34:25,360 EACH OTHER AND ONE GROUP AND 904 00:34:25,360 --> 00:34:26,640 CONNECTIVITY PEOPLE FEEL 905 00:34:26,640 --> 00:34:27,480 COMFORTABLE SPEAKING UP AND 906 00:34:27,480 --> 00:34:29,960 IMPORTANT IN ENGAGEMENT 907 00:34:29,960 --> 00:34:31,040 INTERACTIONS AND WE HAD SPECIFIC 908 00:34:31,040 --> 00:34:33,560 QUESTIONS WE WANTED REACTIONS TO 909 00:34:33,560 --> 00:34:35,280 THERE WERE WRITTEN RESPONSES 910 00:34:35,280 --> 00:34:37,080 THAT WERE RECORDED AS MENTIONED 911 00:34:37,080 --> 00:34:38,760 AND RECORDINGS WERE DEIDENTIFIED 912 00:34:38,760 --> 00:34:40,520 AND NOTES WERE USED TO HELP US 913 00:34:40,520 --> 00:34:43,200 COME UP WITH ADDITIONAL CONCEPTS 914 00:34:43,200 --> 00:34:46,200 DISTILLING WHAT WE HEARD THAT 915 00:34:46,200 --> 00:34:46,760 DAY. 916 00:34:46,760 --> 00:34:48,840 AND MANY INDIVIDUALS WOULD BRING 917 00:34:48,840 --> 00:34:50,160 PERSONAL [INDISCERNIBLE] AND 918 00:34:50,160 --> 00:34:51,640 CONVERSATIONS WE WERE HAVING 919 00:34:51,640 --> 00:34:52,680 WERE INTERESTING AND WOULD BRING 920 00:34:52,680 --> 00:34:56,280 UP PERSONAL EXAMPLES INFUSING 921 00:34:56,280 --> 00:34:57,880 INTO USE CASE WE PRESENT WHICH 922 00:34:57,880 --> 00:34:59,040 IS IMPORTANT RATHER THAN BEING 923 00:34:59,040 --> 00:35:02,200 OWN SCENARIOS I HAD SCENARIO MY 924 00:35:02,200 --> 00:35:03,800 FAMILY MEMBER NEEDED THIS AND 925 00:35:03,800 --> 00:35:05,680 REALLY WAS TO SEE PARTICIPANTS 926 00:35:05,680 --> 00:35:07,640 BRING OWN USE CASES TO INFORM 927 00:35:07,640 --> 00:35:12,320 THOSE. NEXT SLIDE, PLEASE. 928 00:35:12,320 --> 00:35:15,480 SO, A LOT OF WORK WENT INTO THEN 929 00:35:15,480 --> 00:35:20,760 REVIEWING COMMENTS AND REVIEWING 930 00:35:20,760 --> 00:35:23,160 CONATIVERSATIONS WE HAD FOLKS 931 00:35:23,160 --> 00:35:24,960 REVIEWING AND TAKING NOTES 932 00:35:24,960 --> 00:35:26,320 DURING THOSE AND IMPORTANT TO 933 00:35:26,320 --> 00:35:28,720 NOTE MAJOR THEMES WE SAW COMING 934 00:35:28,720 --> 00:35:30,880 OUT OF THAT. THIS IS EFFECTED 935 00:35:30,880 --> 00:35:32,760 BY HOW WE -- WHAT WE HEARD. 936 00:35:32,760 --> 00:35:34,720 SOME OF THE MAJOR THINGS WE 937 00:35:34,720 --> 00:35:37,120 HEARD WAS OVERALL SUPPORT FOR 938 00:35:37,120 --> 00:35:40,480 DATA SHARING THAT DEPENDED UPON 939 00:35:40,480 --> 00:35:42,480 WHO WAS RECEIVING DATA AND WAS 940 00:35:42,480 --> 00:35:44,040 ALWAYS VERY CHALLENGE RING FOR 941 00:35:44,040 --> 00:35:45,520 THEM TO UNDERSTAND WHO IS 942 00:35:45,520 --> 00:35:46,760 RESEARCHER AND COMPANY AND ONE 943 00:35:46,760 --> 00:35:48,280 DOING RESEARCH AND WHO IS 944 00:35:48,280 --> 00:35:50,320 KEEPING IT AND MANY SCENARIOS 945 00:35:50,320 --> 00:35:52,440 INVOLVED IN INTERMEDIARY AND 946 00:35:52,440 --> 00:35:53,560 DEVICE AND COMMERCIAL PRODUCT 947 00:35:53,560 --> 00:35:55,440 AND RESEARCHER POTENTIALLY 948 00:35:55,440 --> 00:35:56,840 SOMEWHERE IN THAT PANELWAY OR 949 00:35:56,840 --> 00:35:59,000 END OF THE PANELWAY AND 950 00:35:59,000 --> 00:36:01,360 DEPENDING WHO IS RECEIVING DATA, 951 00:36:01,360 --> 00:36:03,200 SUPPORT VARIED AND WHETHER THEY 952 00:36:03,200 --> 00:36:05,840 DEEMED THAT ENTITY TO BE 953 00:36:05,840 --> 00:36:07,120 TRUSTWORTHY AND HEARD COMMENTS 954 00:36:07,120 --> 00:36:10,960 SUCH AS I TRUST MY DOCTOR. THEN 955 00:36:10,960 --> 00:36:13,680 WE HAD PROBE DO YOU TRUST 956 00:36:13,680 --> 00:36:15,640 DOCTORS OR YOUR DOCTOR OR 957 00:36:15,640 --> 00:36:17,320 ADVANCED PRACTICE PROVIDER AND 958 00:36:17,320 --> 00:36:18,480 NUANCE IS IMPORTANT TO 959 00:36:18,480 --> 00:36:24,040 UNDERSTAND WHO THEY TRUST WLD A 960 00:36:24,040 --> 00:36:25,520 CLINICAL ROUND OR NOT AND THEY 961 00:36:25,520 --> 00:36:27,960 DID THE THING WE HOPE FOLKS DO 962 00:36:27,960 --> 00:36:30,560 WHICH IS DO A RISK BENEFIT 963 00:36:30,560 --> 00:36:32,000 ASSESSMENT AND WHAT ARE 964 00:36:32,000 --> 00:36:34,400 POTENTIAL REAL BENEFITS HOW 965 00:36:34,400 --> 00:36:36,200 THEORETICAL BENEFITS ARE VERSUS 966 00:36:36,200 --> 00:36:38,600 HOW REAL BENEFITS ARE THEY FELT 967 00:36:38,600 --> 00:36:40,240 RISKS WERE REAL AND PRIVACY 968 00:36:40,240 --> 00:36:43,840 RISKS THEY ASSESSED WERE REAL 969 00:36:43,840 --> 00:36:47,720 AND DID ON DAILY BASIS POTENTIAL 970 00:36:47,720 --> 00:36:49,200 SOCIETAL OR INDIVIDUAL BENEFIT 971 00:36:49,200 --> 00:36:51,360 IS IT. THEIR SUPPORT DEPENDED 972 00:36:51,360 --> 00:36:53,480 ON PERCEPTION OF THAT BALANCE. 973 00:36:53,480 --> 00:36:55,280 THEY WERE A LITTLE CONCERNED AND 974 00:36:55,280 --> 00:36:57,120 THEY EXPRESSED IT REPEATEDLY 975 00:36:57,120 --> 00:36:58,680 AROUND HOW LITTLE THEY KNEW 976 00:36:58,680 --> 00:37:00,840 ABOUT HOW THEIR DATA WAS BEING 977 00:37:00,840 --> 00:37:02,960 SHARED ALREADY THAT IS A REALLY 978 00:37:02,960 --> 00:37:06,000 NEAT I WILL INSERT A FACTOR THAT 979 00:37:06,000 --> 00:37:09,360 IS NOT REALISTIC NOT SURE 980 00:37:09,360 --> 00:37:10,480 BIMODAL DISTRIBUTION OR WIDE 981 00:37:10,480 --> 00:37:13,000 RANGE AND DATA USED IN DIFFERENT 982 00:37:13,000 --> 00:37:14,920 WAYS AND LINKAGES THAT ARE 983 00:37:14,920 --> 00:37:17,080 HAPPENING AND SAME TIME SEEING 984 00:37:17,080 --> 00:37:19,240 PARTICIPANTS SAY WHAT YOU CAN DO 985 00:37:19,240 --> 00:37:21,720 THAT AND YOU SAW A WIDE RANGE OF 986 00:37:21,720 --> 00:37:23,160 PERCEPTIONS AND KNOWLEDGE THAT 987 00:37:23,160 --> 00:37:25,720 IS HAPPENING IN DATA AND WERE 988 00:37:25,720 --> 00:37:26,360 CONCERNED EXTREMELY ABOUT HOW 989 00:37:26,360 --> 00:37:28,320 LITTLE CONTROL THEY HAD ABOUT 990 00:37:28,320 --> 00:37:30,120 WHAT WAS ALREADY HAPPENING WAS 991 00:37:30,120 --> 00:37:33,680 REALLY SEEING THE PARTICIPANTS 992 00:37:33,680 --> 00:37:35,520 LEARN FROM EACH OTHER THROUGH 993 00:37:35,520 --> 00:37:37,240 THAT PROCESS AND WE LEARNED FROM 994 00:37:37,240 --> 00:37:39,200 A GENERAL THEME THEY REALLY 995 00:37:39,200 --> 00:37:40,480 WANTED MORE TRANSPARENCY ABOUT 996 00:37:40,480 --> 00:37:42,320 WHAT WAS HAPPENING WITH DATA AND 997 00:37:42,320 --> 00:37:43,960 THOSE PERCEIVING AND 998 00:37:43,960 --> 00:37:44,800 UNDERSTANDING WHAT WAS HAPPENING 999 00:37:44,800 --> 00:37:46,640 THEY ASSUMED IT WAS HAPPENING 1000 00:37:46,640 --> 00:37:47,840 ALL THE TIME WHETHER OR NOT THEY 1001 00:37:47,840 --> 00:37:50,840 WANTED IT TO BE HAPPENING AND IS 1002 00:37:50,840 --> 00:37:52,480 NOT REAL EITHER AND GUARD RAILS 1003 00:37:52,480 --> 00:37:55,280 IN PLACE AND MORE TRANSPARENCY 1004 00:37:55,280 --> 00:37:56,040 HAPPENING FROM THOSE THAT FELT 1005 00:37:56,040 --> 00:37:58,000 THEY WERE AWARE OF IT AND THOSE 1006 00:37:58,000 --> 00:37:59,800 LESS AWARE OF IT AND FIN WILL I 1007 00:37:59,800 --> 00:38:01,280 SOME MOR CERTAINTY THAT IS 1008 00:38:01,280 --> 00:38:03,240 REGARDING BENEFITS THAT ARE OUT 1009 00:38:03,240 --> 00:38:05,960 THERE. SO, SOME MORE CONCRETE 1010 00:38:05,960 --> 00:38:07,280 ASSESSMENTS OF WHAT BENEFIT IS 1011 00:38:07,280 --> 00:38:09,200 POSSIBLE AND ASSURANCE THAT 1012 00:38:09,200 --> 00:38:13,000 BENEFITS MIGHT BE WORTH THOSE 1013 00:38:13,000 --> 00:38:13,320 POTENTIALS. 1014 00:38:13,320 --> 00:38:14,640 THESE ARE HIGH-LEVEL THEMES 1015 00:38:14,640 --> 00:38:16,960 GOING INTO ADDITIONAL DETAILS 1016 00:38:16,960 --> 00:38:18,960 WITH PANELS AND DIGGING INTO 1017 00:38:18,960 --> 00:38:20,520 DIFFERENT SCENARIOS. 1018 00:38:20,520 --> 00:38:21,800 NEXT SLIDE, PLEASE. 1019 00:38:21,800 --> 00:38:24,400 IN CONCLUSION, WE HAVE HAD AN 1020 00:38:24,400 --> 00:38:25,960 EXCITING COUPLE OF MONTHS 1021 00:38:25,960 --> 00:38:27,600 TOGETHER. WE ARE NOT QUITE DONE 1022 00:38:27,600 --> 00:38:30,000 YET. THAT IS PART OF OUR TIME 1023 00:38:30,000 --> 00:38:32,480 TODAY TO BRING THOSE CONCEPTS 1024 00:38:32,480 --> 00:38:34,280 TOGETHER AND LAUNCH US INTO A 1025 00:38:34,280 --> 00:38:35,680 WRITING PHASE AND TO HAVE SOME 1026 00:38:35,680 --> 00:38:38,080 DISTILLATION OF THOSE IDEAS AND 1027 00:38:38,080 --> 00:38:39,800 TODAY WE WILL BE ORGANIZE THE AS 1028 00:38:39,800 --> 00:38:42,160 YOU HAVE IN YOUR AGENDA AND ARE 1029 00:38:42,160 --> 00:38:43,680 CURRENTLY ON SCHEDULE, I 1030 00:38:43,680 --> 00:38:46,000 BELIEVE. 5 MINUTES AHEAD. WE 1031 00:38:46,000 --> 00:38:47,840 WILL HAVE A BREAK STARTING NOW 1032 00:38:47,840 --> 00:38:50,320 AND WILL DIG INTO TWO PANELS 1033 00:38:50,320 --> 00:38:52,040 STARTING AT 10 A.M. PACIFIC TIME 1034 00:38:52,040 --> 00:38:54,360 AND WILL HAVE ONE PANEL AND A 1035 00:38:54,360 --> 00:38:57,040 LUNCH BREAK AND TWO PANELS AND 1036 00:38:57,040 --> 00:38:58,440 THEN A FINAL PANEL THAT KIND OF 1037 00:38:58,440 --> 00:39:03,240 BRINGS ALL IDEAS TOGETHER AND 1038 00:39:03,240 --> 00:39:03,480 THEMES. 1039 00:39:03,480 --> 00:39:06,920 AS MENTIONED EARLIER, PLEASE 1040 00:39:06,920 --> 00:39:09,280 THOSE JOINING ONLINE E-MAIL 1041 00:39:09,280 --> 00:39:10,800 QUESTIONS DURING ONLINE SESSION 1042 00:39:10,800 --> 00:39:13,120 OR THEREAFTER TO SCIENCE POLICY 1043 00:39:13,120 --> 00:39:16,960 AT OD.NIH.GOV AND READ ALOUD 1044 00:39:16,960 --> 00:39:18,760 DURING INTERACTIONS TODAY AND 1045 00:39:18,760 --> 00:39:20,000 USING TO GUIDE INTERACTIONS 1046 00:39:20,000 --> 00:39:20,640 GOING FORWARD. 1047 00:39:20,640 --> 00:39:23,360 WITH THAT, I WILL PAUSE AND GIVE 1048 00:39:23,360 --> 00:39:25,200 OURSELVES A 20 MINUTE BREAK 1049 00:39:25,200 --> 00:39:26,840 UNTIL 10 A.M. PACIFIC TIME. 1050 00:39:26,840 --> 00:39:29,520 THANK YOU, EVERYBODY. 1051 00:39:29,520 --> 00:39:34,560 >>WELCOME BACK. I'M CINNAMON 1052 00:39:34,560 --> 00:39:37,480 BLOSS. MY PLEASURE TO KICK OFF 1053 00:39:37,480 --> 00:39:43,240 THE FIRST PANEL TODAY. 1054 00:39:43,240 --> 00:39:46,320 -- IS AN ASSOCIATE PROFESSOR OF 1055 00:39:46,320 --> 00:39:48,000 ENGINEERING SYSTEMS AND 1056 00:39:48,000 --> 00:39:50,960 ENVIRONMENT AND RESEARCH FOCUSES 1057 00:39:50,960 --> 00:39:54,200 ON UNDERSTANDING AND DESIGNING 1058 00:39:54,200 --> 00:39:58,240 SOLUTIONS -- I WOULD LIKE TO 1059 00:39:58,240 --> 00:40:00,600 INTRODUCE KOLBI BROWN A DIRECTOR 1060 00:40:00,600 --> 00:40:03,440 AT PYXIS PARTNERS WORKING TO 1061 00:40:03,440 --> 00:40:06,200 FURTHER THE FIRM'S GOALS AND 1062 00:40:06,200 --> 00:40:08,320 HEALTH INITIATIVES OF THE 1063 00:40:08,320 --> 00:40:10,960 COMPANY AND NIH ALL OF US 1064 00:40:10,960 --> 00:40:14,200 PROGRAM AND WOULD LIKE TO 1065 00:40:14,200 --> 00:40:15,920 INTRODUCE JENNIFER WAGNER AN 1066 00:40:15,920 --> 00:40:17,800 ASSISTANT PROFESSOR OF LAW AND 1067 00:40:17,800 --> 00:40:21,680 POLICY AND ENGINEERING AND 1068 00:40:21,680 --> 00:40:23,640 RESEARCH FOCUSES ON -- DESIGN 1069 00:40:23,640 --> 00:40:25,640 AND MATTERS OF 1070 00:40:25,640 --> 00:40:27,040 NON-DISCRIMINATION PRIVACY AND 1071 00:40:27,040 --> 00:40:30,200 EQUITY WITH HEALTH TECHNOLOGIES 1072 00:40:30,200 --> 00:40:33,640 AND FINALLY AARON COLLMAN, 1073 00:40:33,640 --> 00:40:40,720 FOUNDER AND CEO OF FITABASE. 1074 00:40:40,720 --> 00:40:43,160 I FEEL GRATEFUL YOU ARE ALL ABLE 1075 00:40:43,160 --> 00:40:45,760 TO JOIN US TODAY. 1076 00:40:45,760 --> 00:40:47,440 THE TOPIC FOR OUR FIRST PANEL 1077 00:40:47,440 --> 00:40:50,600 HERE IS FOCUSED ON NOVEL DATA 1078 00:40:50,600 --> 00:40:53,280 TYPES USED OUTSIDE OF THE 1079 00:40:53,280 --> 00:40:54,560 TRADITIONAL HEALTH CARE SYSTEM 1080 00:40:54,560 --> 00:40:57,440 AND BRIEF REMINDER FOR THOSE 1081 00:40:57,440 --> 00:40:59,840 TUNING IN YOU MAY SUBMIT YOUR 1082 00:40:59,840 --> 00:41:03,960 QUESTIONS TO SCIENCE AT 1083 00:41:03,960 --> 00:41:04,280 OD.NIH.GOV. 1084 00:41:04,280 --> 00:41:05,800 NEXT SLIDE, PLEASE. 1085 00:41:05,800 --> 00:41:07,680 ALL RIGHT. JUST A REMINDER 1086 00:41:07,680 --> 00:41:12,440 ABOUT OUR PROCESS FOR TODAY. 1087 00:41:12,440 --> 00:41:15,440 WE WILL HONE IN ON RESEARCH 1088 00:41:15,440 --> 00:41:16,760 TOPIC MENTIONED DATA THAT IS 1089 00:41:16,760 --> 00:41:18,760 COLLECTED AND USED THAT ARE 1090 00:41:18,760 --> 00:41:20,760 GENERATED OUTSIDE OF THE HEALTH 1091 00:41:20,760 --> 00:41:25,000 CARE SYSTEM AND SAZ SACHIN 1092 00:41:25,000 --> 00:41:27,560 REVIEWED IN THE LAST TALK 1093 00:41:27,560 --> 00:41:28,920 WORKING GROUP IDENTIFIED THIS AS 1094 00:41:28,920 --> 00:41:31,680 AN IMPORTANT TOPIC. WE 1095 00:41:31,680 --> 00:41:33,720 DEVELOPED TWO DIFFERENT CASE 1096 00:41:33,720 --> 00:41:34,920 STUDIES THAT REFLECT THIS TOPIC. 1097 00:41:34,920 --> 00:41:37,560 FIRST ONE THAT IS FOCUSED ON 1098 00:41:37,560 --> 00:41:39,680 WEARABLE APP AND SOCIAL MEDIA 1099 00:41:39,680 --> 00:41:42,120 DATA TO MONITOR HEART HEALTH AND 1100 00:41:42,120 --> 00:41:45,280 SECOND CASE STUDY ON IN-HOME 1101 00:41:45,280 --> 00:41:48,520 CENSORS AND SMART DEVICES TO 1102 00:41:48,520 --> 00:41:50,480 MONITOR OLD AND RELATIVE HEALTH. 1103 00:41:50,480 --> 00:41:54,120 IF YOU WOULD LIKE TO LOOK AT A 1104 00:41:54,120 --> 00:41:55,560 DETAILED DESCRIPTION OF THE KAIS 1105 00:41:55,560 --> 00:41:58,600 STUDIES THEY ARE ONLINE ON THE 1106 00:41:58,600 --> 00:42:01,000 WEBSITE. WE WILL CONTEXTUALIZE 1107 00:42:01,000 --> 00:42:04,240 PUBLIC FEEDBACK THROUGH CASE 1108 00:42:04,240 --> 00:42:05,800 STUDIES THROUGH LENS OF RESEARCH 1109 00:42:05,800 --> 00:42:08,080 AND APPLICATION TO CLINICAL AND 1110 00:42:08,080 --> 00:42:10,280 PUBLIC HEALTH CONTEXT WITH HELP 1111 00:42:10,280 --> 00:42:12,480 OF PANELISTS THAT JOINED US 1112 00:42:12,480 --> 00:42:16,080 TODAY. OUR GOAL IS TO REALLY 1113 00:42:16,080 --> 00:42:18,200 THINK ABOUT HOW WE INTEGRATE 1114 00:42:18,200 --> 00:42:20,480 PUBLIC FEEDBACK TO ASSESS 1115 00:42:20,480 --> 00:42:22,240 IMPLICATIONS FOR DEVELOPMENT OF 1116 00:42:22,240 --> 00:42:24,960 NIH'S PROGRAMS AND POLICIES. 1117 00:42:24,960 --> 00:42:27,360 NEXT SLIDE, PLEASE. 1118 00:42:27,360 --> 00:42:29,640 ALL RIGHT. SO, THERE IS QUITE A 1119 00:42:29,640 --> 00:42:33,120 BIT OF FEEDBACK GAINED THROUGH 1120 00:42:33,120 --> 00:42:35,200 THE NUMBERS OF SESSIONS WE HAD 1121 00:42:35,200 --> 00:42:37,080 THAT WERE DESCRIBED PREVIOUSLY. 1122 00:42:37,080 --> 00:42:39,440 AGAIN, IF YOU WANT TO READ MORE 1123 00:42:39,440 --> 00:42:41,640 DETAILS, THERE IS A MUCH MORE 1124 00:42:41,640 --> 00:42:43,360 DETAILED SUMMARY POSTED ONLINE. 1125 00:42:43,360 --> 00:42:46,360 HERE IS A TUM OF THE KIND OF 1126 00:42:46,360 --> 00:42:48,560 TOP-LEVEL FEEDBACK WITH REGARDS 1127 00:42:48,560 --> 00:42:50,200 TO THIS FIRST QUESTION. FIRST 1128 00:42:50,200 --> 00:42:53,120 OF ALL, IN GENERAL PARTICIPANTS 1129 00:42:53,120 --> 00:42:54,920 SUPPORTED SHARING DATA TO 1130 00:42:54,920 --> 00:42:56,560 IMPROVE THEIR OWN HEALTH AND 1131 00:42:56,560 --> 00:42:58,160 HEALTH OF INDIVIDUALS IN THEIR 1132 00:42:58,160 --> 00:42:59,760 COMMUNITY INCLUDING FOR RESEARCH 1133 00:42:59,760 --> 00:43:02,400 PURPOSES AND THEY WANTED 1134 00:43:02,400 --> 00:43:03,680 REASSURANCES, HOWEVER, PRIVACY 1135 00:43:03,680 --> 00:43:06,040 WOULD BE PRODUCTIVE SHARING 1136 00:43:06,040 --> 00:43:07,760 PERSONALIZED IDENTIFIABLE DATA 1137 00:43:07,760 --> 00:43:09,080 AND RESEARCH FROM SOCIAL MEDIA 1138 00:43:09,080 --> 00:43:11,240 AND ONE OF THE FORMS OF DATA 1139 00:43:11,240 --> 00:43:12,760 THAT IS OBVIOUSLY GENERATED 1140 00:43:12,760 --> 00:43:15,000 OUTSIDE OF THE HEALTH CARE 1141 00:43:15,000 --> 00:43:17,720 SYSTEM WE CAN TALK ABOUT HERE 1142 00:43:17,720 --> 00:43:18,080 TODAY. 1143 00:43:18,080 --> 00:43:20,520 THEY -- IF DATA COULD BE 1144 00:43:20,520 --> 00:43:22,680 PROTECTED AGAINST MISUSE, MANY 1145 00:43:22,680 --> 00:43:24,120 PARTICIPANTS WERE ENTHUSIASTIC 1146 00:43:24,120 --> 00:43:26,040 ABOUT CONTRIBUTING TO RESEARCH 1147 00:43:26,040 --> 00:43:28,120 AND ADDRESSING HEALTH ISSUES IN 1148 00:43:28,120 --> 00:43:29,640 THEIR OWN COMMUNITIES AND 1149 00:43:29,640 --> 00:43:31,720 SUPPORT FOR SHARING DATA WAS 1150 00:43:31,720 --> 00:43:33,120 DEPENDENT ON WHO WOULD RECEIVE 1151 00:43:33,120 --> 00:43:34,800 DATA AND WHETHER THEY WERE 1152 00:43:34,800 --> 00:43:36,680 TRUSTWORTHY OR PERCEIVED AS 1153 00:43:36,680 --> 00:43:38,240 BEING TRUSTWORTHY. 1154 00:43:38,240 --> 00:43:39,880 NEXT SLIDE, PLEASE. 1155 00:43:39,880 --> 00:43:44,520 OKAY. SO, I WILL KICK OFF THIS 1156 00:43:44,520 --> 00:43:47,520 PANEL WITH PANELIST REFLECTIONS 1157 00:43:47,520 --> 00:43:49,840 AND IN PARTICULAR, YOU KNOW, I 1158 00:43:49,840 --> 00:43:51,480 HAVE ASKED PANELISTS TO THINK 1159 00:43:51,480 --> 00:43:53,680 ABOUT WHAT WE ARE INITIAL 1160 00:43:53,680 --> 00:43:54,920 IMPRESSIONS FROM THE FEEDBACK 1161 00:43:54,920 --> 00:43:58,000 THAT YOU -- THAT YOU READ. 1162 00:43:58,000 --> 00:44:00,040 HOW -- WHAT PARTICULAR 1163 00:44:00,040 --> 00:44:01,680 PERSPECTIVE OR CONTEXT YOU BRING 1164 00:44:01,680 --> 00:44:03,240 TO THOSE REACTIONS. 1165 00:44:03,240 --> 00:44:06,640 SO, I'M ACTUALLY GOING TO START 1166 00:44:06,640 --> 00:44:09,040 WITH COLBY. 1167 00:44:09,040 --> 00:44:11,480 COLBY BRINGS A UNIQUE AND KEY 1168 00:44:11,480 --> 00:44:13,080 PERSPECTIVE TO THE PANEL AS ONE 1169 00:44:13,080 --> 00:44:16,400 PERSON WHO LED AND FACILITATED 1170 00:44:16,400 --> 00:44:18,240 ENGAGEMENT SESSIONS WE HEALED 1171 00:44:18,240 --> 00:44:19,040 WITH PARTICIPANTS. 1172 00:44:19,040 --> 00:44:21,720 KOL BI, WHAT WERE SOME OF YOUR 1173 00:44:21,720 --> 00:44:24,120 TAKEAWAYS AS A FACILITATOR? 1174 00:44:24,120 --> 00:44:25,520 WERE THERE PARTICULAR ANECDOTES 1175 00:44:25,520 --> 00:44:27,760 OR DISCUSSIONS THAT STUCK WITH 1176 00:44:27,760 --> 00:44:31,640 YOU AND ANY SURPRISES? 1177 00:44:31,640 --> 00:44:33,840 WE WILL HEAR FROM YOU. LY PASS 1178 00:44:33,840 --> 00:44:36,280 IT TO THE REST OF THE PANELISTS. 1179 00:44:36,280 --> 00:44:38,400 >>OF COURSE. GOOD MORNING AND 1180 00:44:38,400 --> 00:44:40,160 THANK YOU FOR THE INTRODUCTION. 1181 00:44:40,160 --> 00:44:42,040 YOU KNOW, IT IS A REAL PRIVILEGE 1182 00:44:42,040 --> 00:44:44,840 TO BE ABLE TO HAVE OR 1183 00:44:44,840 --> 00:44:46,560 PARTICIPATE IN COMMUNITY 1184 00:44:46,560 --> 00:44:47,960 CONVERSATIONS AND IN TERMS OF 1185 00:44:47,960 --> 00:44:51,280 THERE ARE MANY, MANY THOUGHTS 1186 00:44:51,280 --> 00:44:53,520 THAT I HAVE. 1187 00:44:53,520 --> 00:44:57,440 WHAT REALLY STRUCK ME FIRST AND 1188 00:44:57,440 --> 00:44:58,720 FOREMOST IS THE WILLINGNESS OF 1189 00:44:58,720 --> 00:45:01,280 THESE COMMUNITIES TO LEARN AND 1190 00:45:01,280 --> 00:45:03,520 LISTEN ABOUT THESE TOPICS. 1191 00:45:03,520 --> 00:45:07,120 THERE WERE INDIVIDUALS WHO SO 1192 00:45:07,120 --> 00:45:10,120 DEEPLY CARE ABOUT HELP OF THEIR 1193 00:45:10,120 --> 00:45:11,320 COMMUNITIES AND THEIR OWN 1194 00:45:11,320 --> 00:45:13,080 PERSONAL HEALTH AND ARE REALLY 1195 00:45:13,080 --> 00:45:14,920 CURIOUS ABOUT THE TANGIBLE 1196 00:45:14,920 --> 00:45:18,560 BENEFITS OF PARTICIPATING AND IN 1197 00:45:18,560 --> 00:45:20,760 RESEARCH AND EXPLORING THESE 1198 00:45:20,760 --> 00:45:22,520 NOVEMBEREL TECHNOLOGIES. 1199 00:45:22,520 --> 00:45:24,720 THAT, I -- IN SOME OF MY 1200 00:45:24,720 --> 00:45:26,440 PREVIOUS WORK KNOWING ABOUT HOW 1201 00:45:26,440 --> 00:45:28,240 -- KNOWING, OF COURSE, PEOPLE 1202 00:45:28,240 --> 00:45:30,200 CARE ABOUT THEIR COMMUNITIES AND 1203 00:45:30,200 --> 00:45:31,560 THESE ARE PASSIONATE GROUPS WE 1204 00:45:31,560 --> 00:45:33,800 ARE ABLE TO MEET WITH. WITH 1205 00:45:33,800 --> 00:45:38,040 THAT BEING SAID, WHERE I ALSO 1206 00:45:38,040 --> 00:45:40,960 WAS SURPRISED WAS AS WE ARE 1207 00:45:40,960 --> 00:45:42,120 TALKING ABOUT RESEARCH, AND 1208 00:45:42,120 --> 00:45:44,920 WHERE WE ARE GOING, THERE REALLY 1209 00:45:44,920 --> 00:45:48,760 DID SEEM TO BE A LARGE 1210 00:45:48,760 --> 00:45:50,400 DISCONNECT BETWEEN, YOU KNOW, 1211 00:45:50,400 --> 00:45:53,400 ONE CASE STUDY WE USE IS 1212 00:45:53,400 --> 00:45:54,800 CARDIOVASCULAR DISEASE AND IN 1213 00:45:54,800 --> 00:45:57,680 USING SOCIAL MEDIA AS A TOOL TO 1214 00:45:57,680 --> 00:46:00,400 HELP IN THAT CARE. 1215 00:46:00,400 --> 00:46:03,240 AND PEOPLE HAD A HARD TIME 1216 00:46:03,240 --> 00:46:05,240 MAKING THE LEAP INTO HOW 1217 00:46:05,240 --> 00:46:07,200 PROVIDING SOCIAL MEDIA ACCESS TO 1218 00:46:07,200 --> 00:46:11,120 OUR RESEARCHER AND ULTIMATELY 1219 00:46:11,120 --> 00:46:15,680 WHAT IMPACT THEIR HEALTH 1220 00:46:15,680 --> 00:46:16,040 LONG-TERM. 1221 00:46:16,040 --> 00:46:18,800 I WAS STRUCK ABOUT ONE WHERE THE 1222 00:46:18,800 --> 00:46:21,160 CONCEPTS THAT PEOPLE HAVE THAT 1223 00:46:21,160 --> 00:46:24,360 ARE REGARDING WHAT RESEARCH DOES 1224 00:46:24,360 --> 00:46:25,680 VERSUS OR DOESN'T DO VERSUS 1225 00:46:25,680 --> 00:46:27,920 WHERE THE FIELD IS ACTUALLY 1226 00:46:27,920 --> 00:46:28,160 MOVING. 1227 00:46:28,160 --> 00:46:30,160 THE LAST THING I WILL SAY IS 1228 00:46:30,160 --> 00:46:32,480 JUST THINKING ABOUT THE RETURN 1229 00:46:32,480 --> 00:46:34,400 OF VALUE TO PARTICIPANTS AND 1230 00:46:34,400 --> 00:46:37,480 UNDERSTANDING THAT THERE IS A 1231 00:46:37,480 --> 00:46:39,680 REALLY HIGH THRESHOLD AND BAR 1232 00:46:39,680 --> 00:46:41,800 THAT INDIVIDUALS AND 1233 00:46:41,800 --> 00:46:43,320 COMMUNITIES, I THINK, ARE 1234 00:46:43,320 --> 00:46:44,720 LOOKING FOR FROM RESEARCHERS IF 1235 00:46:44,720 --> 00:46:49,000 YOU ARE GOING TO COME TO THEM 1236 00:46:49,000 --> 00:46:51,480 ASKING FOR ACCESS TO ANY 1237 00:46:51,480 --> 00:46:53,640 PARTICULAR NOVEL TECHNOLOGY OR 1238 00:46:53,640 --> 00:46:54,400 RESEARCH IN GENERAL. 1239 00:46:54,400 --> 00:46:59,360 >>THANK YOU SO MUCH, KOLB. 1240 00:46:59,360 --> 00:46:59,560 BY : 1241 00:46:59,560 --> 00:47:00,040 >>OF COURSE. 1242 00:47:00,040 --> 00:47:01,640 >>YOU ALL HAD A CHANCE TO 1243 00:47:01,640 --> 00:47:03,240 RECEIVE FEEDBACK RECEIVED ON 1244 00:47:03,240 --> 00:47:08,640 ISSUE OF NOVEL DATA TYPES 1245 00:47:08,640 --> 00:47:09,600 STARTING WITH RUPA. MAYBE YOU 1246 00:47:09,600 --> 00:47:11,280 CAN ALSO PROVIDE US WITH ONE OR 1247 00:47:11,280 --> 00:47:12,960 TWO THINGS IT THAT STOOD OUT TO 1248 00:47:12,960 --> 00:47:14,880 YOU MOST ABOUT THE FEEDBACK AND 1249 00:47:14,880 --> 00:47:16,560 YOUR REACTIONS AND SURPRISES AND 1250 00:47:16,560 --> 00:47:17,040 SO ON. 1251 00:47:17,040 --> 00:47:19,960 >>SURE. I WOULD BE HAPPY TO. 1252 00:47:19,960 --> 00:47:22,960 GOOD MORNING, EVERYONE. 1253 00:47:22,960 --> 00:47:26,200 SO, I'M RUPA VALDEZ AND AT 1254 00:47:26,200 --> 00:47:27,880 UNIVERSITY OF VIRGINIA AND 1255 00:47:27,880 --> 00:47:30,200 SPEAKING YOU TO AS COMMUNITY 1256 00:47:30,200 --> 00:47:32,280 ENGAGED RESEARCHER AND ONE WITH 1257 00:47:32,280 --> 00:47:33,280 MULTIPLE CHRONIC HEALTH 1258 00:47:33,280 --> 00:47:36,440 CONDITIONS AND POSITIONALITY AS 1259 00:47:36,440 --> 00:47:38,840 A RESEARCHER AND ALSO AS A 1260 00:47:38,840 --> 00:47:40,920 PATIENT AND I WANT TO REALLY 1261 00:47:40,920 --> 00:47:42,040 HIGHLIGHT THIS IDEA THAT 1262 00:47:42,040 --> 00:47:43,320 FEEDBACK THAT WE RECEIVE FROM 1263 00:47:43,320 --> 00:47:46,200 COMMUNITY CONVERSATIONS TO ME 1264 00:47:46,200 --> 00:47:47,520 RESONATES REALLY WITH WHAT I 1265 00:47:47,520 --> 00:47:49,240 HEAR WITHIN COMMUNITIES WITH 1266 00:47:49,240 --> 00:47:51,520 WHICH I WORK AND PUBLIC HOUSING 1267 00:47:51,520 --> 00:47:54,200 COMMUNITIES AND COMMUNITIES IN 1268 00:47:54,200 --> 00:47:56,360 RURAL APPALACHIA AND COMMUNITIES 1269 00:47:56,360 --> 00:47:57,800 THAT LIVE WITH DISABILITIES AS 1270 00:47:57,800 --> 00:47:59,800 WELL AND MUCH OF THE 1271 00:47:59,800 --> 00:48:02,160 CONVERSATIONS REALLY TO KOLBI'S 1272 00:48:02,160 --> 00:48:04,360 POINT AND BUILDING ON THAT POINT 1273 00:48:04,360 --> 00:48:05,800 ABOUT IS IT WORTH THIS 1274 00:48:05,800 --> 00:48:07,000 PARTICIPATION AND IS IT WORTH 1275 00:48:07,000 --> 00:48:09,880 THE ENGAGEMENT AND ARE RISKS OR 1276 00:48:09,880 --> 00:48:13,000 POTENTIAL RISKS OR POTENTIAL 1277 00:48:13,000 --> 00:48:14,200 UNINTENDED CONSEQUENCES OF 1278 00:48:14,200 --> 00:48:15,080 PARTICIPATION, DO THEY OUTWEIGH 1279 00:48:15,080 --> 00:48:17,280 THE BENEFITS AND EXCITING TO ME 1280 00:48:17,280 --> 00:48:19,840 TO SEE NIH AND CONVERSATIONS 1281 00:48:19,840 --> 00:48:21,560 BEING EXPLICITLY REALLY FOCUSED 1282 00:48:21,560 --> 00:48:23,560 ON THIS BALANCE AND TRYING TO 1283 00:48:23,560 --> 00:48:27,560 MAKE THE BALANCE GO IN FAVOR FOR 1284 00:48:27,560 --> 00:48:28,560 THE COMMUNITY AND WILLINGNESS TO 1285 00:48:28,560 --> 00:48:30,080 PARTICIPATE AND SEE VALUE IN THE 1286 00:48:30,080 --> 00:48:31,400 PARTICIPATION AND REFLECTION ON 1287 00:48:31,400 --> 00:48:33,600 THAT I SEE WAYS TO BUILD UPON 1288 00:48:33,600 --> 00:48:35,320 CONVERSATIONS WE ARE HAVING AND 1289 00:48:35,320 --> 00:48:37,040 IN TERMS OF DATA TYPES IT THAT 1290 00:48:37,040 --> 00:48:38,320 MAY BE POSSIBLE. CAN WE THINK 1291 00:48:38,320 --> 00:48:42,000 ABOUT DATA THAT IS RELATED MORE 1292 00:48:42,000 --> 00:48:43,960 EXPLICITLY TO EVEN SOCIAL 1293 00:48:43,960 --> 00:48:45,440 DETERMINANCE OF HEALTH AND 1294 00:48:45,440 --> 00:48:46,720 PEOPLE'S SOCIAL INTERACTIONS 1295 00:48:46,720 --> 00:48:50,000 KNOWING THAT INFLUENCES HEALTH 1296 00:48:50,000 --> 00:48:50,920 AND WELLBEING AND OUTSIDE OF THE 1297 00:48:50,920 --> 00:48:53,480 HOME WHAT DATA WE MIGHT COLLECT 1298 00:48:53,480 --> 00:48:56,160 ABOUT PEOPLE'S EVERY-DAY LIVES 1299 00:48:56,160 --> 00:48:58,040 AND TRANSPORTATION ACCESS AND 1300 00:48:58,040 --> 00:48:59,440 WHEN DO PEOPLE HAVE APPOINTMENTS 1301 00:48:59,440 --> 00:49:01,080 AND HOW LONG IT TAKES THEM TO 1302 00:49:01,080 --> 00:49:02,520 GET TO APPOINTMENTS FANNED THEY 1303 00:49:02,520 --> 00:49:05,080 ARE ON THE MOVE OR WAITING FOR A 1304 00:49:05,080 --> 00:49:08,240 BUTTS STOP FOR EXAMPLE OR FOR A 1305 00:49:08,240 --> 00:49:09,720 FAMILY MEMBER TO PICK THEM UP 1306 00:49:09,720 --> 00:49:11,440 AND ALL THESE CONVERSATIONS THAT 1307 00:49:11,440 --> 00:49:13,520 I HEAR WITHIN COMMUNITIES WITH 1308 00:49:13,520 --> 00:49:14,720 WHICH THEY WORK AND ONE POINT 1309 00:49:14,720 --> 00:49:16,760 RELATE TODAY THAT IN TERMS OF 1310 00:49:16,760 --> 00:49:17,880 THINKING ABOUT WHAT 1311 00:49:17,880 --> 00:49:19,080 INTERVENTIONS MIGHT LOOK LIKE 1312 00:49:19,080 --> 00:49:23,120 AND FOCUS OF THINKING ABOUT 1313 00:49:23,120 --> 00:49:25,560 PREDICTIVE ALGORITHMS AND EARLY 1314 00:49:25,560 --> 00:49:29,000 DIAGNOSIS AND HOW DATA TYPES 1315 00:49:29,000 --> 00:49:29,600 INFORM SYSTEMIC CHANGE AND 1316 00:49:29,600 --> 00:49:31,800 DIFFERENT POLICIES SO WE ARE NOT 1317 00:49:31,800 --> 00:49:33,960 FOCUSED ON EARLY DIAGNOSIS FOR 1318 00:49:33,960 --> 00:49:35,560 EXAMPLE THAT IS SO IMPORTANT AND 1319 00:49:35,560 --> 00:49:37,400 ON ACTUALLY CHANGING STRUCTURES 1320 00:49:37,400 --> 00:49:39,760 WITH WHICH THESE COMMUNITIES 1321 00:49:39,760 --> 00:49:39,960 LIVE. 1322 00:49:39,960 --> 00:49:43,000 >>THANK YOU SO MUCH, RUPA. 1323 00:49:43,000 --> 00:49:45,680 >>THANK YOU FOR HAVING ME. I'M 1324 00:49:45,680 --> 00:49:47,960 COMING FROM PENN STATE 1325 00:49:47,960 --> 00:49:48,640 UNIVERSITY AND HAVE THE 1326 00:49:48,640 --> 00:49:51,920 PRIVILEGE OF WORKING WITH EARLY 1327 00:49:51,920 --> 00:49:54,040 ON RESEARCH PROGRAM AND GUYS 1328 00:49:54,040 --> 00:49:56,560 INGER'S MY COMMUNITY HEALTH 1329 00:49:56,560 --> 00:49:59,680 INITIATIVE AND TRAINED AS AN 1330 00:49:59,680 --> 00:50:00,920 ANTHROPOLOGIST IS PERSPECTIVE I 1331 00:50:00,920 --> 00:50:02,800 BRING HERE AS WELL AS BEING 1332 00:50:02,800 --> 00:50:04,160 TRAINED AS AN ATTORNEY. 1333 00:50:04,160 --> 00:50:05,400 SOMETIMES I WEAR DIFFERENT HATS 1334 00:50:05,400 --> 00:50:07,560 WHEN I APPROACH THESE TYPES OF 1335 00:50:07,560 --> 00:50:09,520 TOPICS AND THOUGHT THIS WORK WAS 1336 00:50:09,520 --> 00:50:11,080 VERY WELL DONE WAS MY FIRST 1337 00:50:11,080 --> 00:50:12,720 IMPRESSION AND I'M SO HAPPY THIS 1338 00:50:12,720 --> 00:50:15,840 WORK WAS TAKEN ON. THE 1339 00:50:15,840 --> 00:50:17,800 ENGAGEMENT AND UNDERSTANDING 1340 00:50:17,800 --> 00:50:19,400 COMMUNITIES IS SO TREMENDOUSLY 1341 00:50:19,400 --> 00:50:20,400 IMPORTANT IN EVERYTHING IT THAT 1342 00:50:20,400 --> 00:50:23,280 WE DO. IT OFTEN IS KIND OF LEFT 1343 00:50:23,280 --> 00:50:27,040 AS AN AFTER THOUGHT OR AS AN 1344 00:50:27,040 --> 00:50:31,000 ALSO OR BUDGET ADD-ON INSTEAD OF 1345 00:50:31,000 --> 00:50:33,040 BEING SEEN AS CRITICAL AND 1346 00:50:33,040 --> 00:50:34,680 ESSENTIAL SUCCESS TO THAT WORK 1347 00:50:34,680 --> 00:50:35,480 AS WE DO IT. 1348 00:50:35,480 --> 00:50:37,760 IN TERMS OF HIGH-LEVEL 1349 00:50:37,760 --> 00:50:39,480 IMPRESSIONS THAT I GOT, LOTS OF 1350 00:50:39,480 --> 00:50:42,040 THESE TOPICS RESONATED WITH ME 1351 00:50:42,040 --> 00:50:43,160 THEMES THAT EMERGE THE FROM 1352 00:50:43,160 --> 00:50:45,080 THESE CONVERSATIONS AND I DON'T 1353 00:50:45,080 --> 00:50:47,400 WANT TO SAY TOO MUCH RIGHT NOW. 1354 00:50:47,400 --> 00:50:50,400 I WILL JUST SAY, YOU KNOW, THESE 1355 00:50:50,400 --> 00:50:52,760 ISSUES OF TRANSPARENCY CERTAINLY 1356 00:50:52,760 --> 00:50:54,200 IT IS SOMETHING THAT I HAVE 1357 00:50:54,200 --> 00:50:57,040 HEARD IN MY OWN WORK WITH FOCUS 1358 00:50:57,040 --> 00:50:59,520 GROUPS IN RURAL AND CENTRAL 1359 00:50:59,520 --> 00:50:59,880 PENNSYLVANIA. 1360 00:50:59,880 --> 00:51:02,120 AND JUST WANTING US TO DO MORE 1361 00:51:02,120 --> 00:51:05,520 ABOUT THE DETAILS; RIGHT? 1362 00:51:05,520 --> 00:51:08,880 SO, THE USE OF VIGNETTE OR CASE 1363 00:51:08,880 --> 00:51:10,240 STUDIES I THOUGHT WAS 1364 00:51:10,240 --> 00:51:11,480 PARTICULARLY USEFUL AND WE HEARD 1365 00:51:11,480 --> 00:51:13,600 HOW THOSE PERSONAL DETAILS GET 1366 00:51:13,600 --> 00:51:15,320 IMBEDDED INTO VIGNETTE EVEN IF 1367 00:51:15,320 --> 00:51:17,240 THEY WERE NOT THERE IN THE FIRST 1368 00:51:17,240 --> 00:51:17,560 PLACE. 1369 00:51:17,560 --> 00:51:20,360 I THINK THAT LOTS OF THE TIMES 1370 00:51:20,360 --> 00:51:23,960 WE MAYBE MISINTERPRET OR 1371 00:51:23,960 --> 00:51:25,080 OVERINTERPRET INFORMATION THAT 1372 00:51:25,080 --> 00:51:29,240 WE GET WITHOUT REALIZING GAPS 1373 00:51:29,240 --> 00:51:31,240 THAT ARE IN QUESTIONS WE ARE 1374 00:51:31,240 --> 00:51:33,360 ASKING AND IN CONVERSATIONS WE 1375 00:51:33,360 --> 00:51:34,640 ARE POSING THAT INDIVIDUALS THEN 1376 00:51:34,640 --> 00:51:36,880 WILL FILL IN WITH THEIR OWN 1377 00:51:36,880 --> 00:51:38,240 PERCEPTIONS OF WHAT IS HAPPENING 1378 00:51:38,240 --> 00:51:40,080 OR IMAGINATION OF WHAT THEY WANT 1379 00:51:40,080 --> 00:51:41,960 TO HAVE HAPPEN AND SO REALLY 1380 00:51:41,960 --> 00:51:44,800 TAKING THE TIME TO GET AT THOSE 1381 00:51:44,800 --> 00:51:45,840 DETAILS AND UNDERSTAND THAT 1382 00:51:45,840 --> 00:51:49,120 NUANCE, I THINK, IS JUST 1383 00:51:49,120 --> 00:51:51,680 TREMENDOUSLY KEY AND IS NOT 1384 00:51:51,680 --> 00:51:53,720 QUICKLY OR CHEAPLY DONE AND 1385 00:51:53,720 --> 00:51:55,440 TAKES LONG-TERM RELATIONSHIPS. 1386 00:51:55,440 --> 00:51:57,160 I'M SURE WE WILL GET INTO 1387 00:51:57,160 --> 00:51:58,800 DETAILS OF THE QUESTIONS AND I 1388 00:51:58,800 --> 00:52:00,880 WILL LEAVE REMARKS AT THAT. 1389 00:52:00,880 --> 00:52:03,240 >>THANK YOU SO MUCH, JEN. I 1390 00:52:03,240 --> 00:52:04,200 LOVE THAT QUOTE AND LET'S DO 1391 00:52:04,200 --> 00:52:06,640 MORE ABOUT THE DETAILS. 1392 00:52:06,640 --> 00:52:08,600 I LOVE THAT. AARON? 1393 00:52:08,600 --> 00:52:12,720 >>THANK YOU. AARON AND CEO OF 1394 00:52:12,720 --> 00:52:14,240 FITABASE AND ALSO VERY HAPPY TO 1395 00:52:14,240 --> 00:52:16,320 BE HERE. I ALSO WAS REALLY 1396 00:52:16,320 --> 00:52:17,880 PLEASED TO SEE LOTS OF THE 1397 00:52:17,880 --> 00:52:20,560 THEMES EMERGE FROM THIS WORK. 1398 00:52:20,560 --> 00:52:23,640 SO, MY CONTEXT FOR TALKING TO 1399 00:52:23,640 --> 00:52:26,440 YOU TODAY IS THAT 11 YEARS AGO I 1400 00:52:26,440 --> 00:52:28,160 STARTED A COMPANY FITABASE TO 1401 00:52:28,160 --> 00:52:31,080 HELP RESEARCHERS BETTER UTILIZE 1402 00:52:31,080 --> 00:52:32,520 CONSUMER WEARABLES AS PART OF 1403 00:52:32,520 --> 00:52:34,800 THEIR STUDIES AND FORTUNATE THAT 1404 00:52:34,800 --> 00:52:36,480 THE COMPANY HAS GROWN AND WE 1405 00:52:36,480 --> 00:52:39,560 HAVE BEEN ABLE TO HELP 1,500 1406 00:52:39,560 --> 00:52:41,200 RESEARCH PROJECTS TO DATE WITH 1407 00:52:41,200 --> 00:52:44,080 TOOLS THAT DEIDENTIFY DATA SETS 1408 00:52:44,080 --> 00:52:45,680 AND COLLECTING THAT DATA MAKING 1409 00:52:45,680 --> 00:52:48,480 IT SIMPLE AND VERY EASY TO DO 1410 00:52:48,480 --> 00:52:49,600 AND ALTHOUGH WE DON'T RUN OUR 1411 00:52:49,600 --> 00:52:52,360 OWN STUDIES, BECAUSE WE ARE SO 1412 00:52:52,360 --> 00:52:54,720 INVOLVED IN LOT OF CUTTING EDGE 1413 00:52:54,720 --> 00:52:56,160 THINKING AND IN THIS SPACE, WE 1414 00:52:56,160 --> 00:52:58,200 ASK TO BE PART OF THE DISCUSSION 1415 00:52:58,200 --> 00:53:00,760 ON HOW WE CAN DO THIS, YOU KNOW, 1416 00:53:00,760 --> 00:53:03,640 A LITTLE BIT PUSHING THE 1417 00:53:03,640 --> 00:53:05,600 ENVELOPE CAN WE DO THIS WITHOUT 1418 00:53:05,600 --> 00:53:08,800 SORT OF HAVING R & B ISSUES AND 1419 00:53:08,800 --> 00:53:10,240 WHAT ARE SORT OF TECHNOLOGICAL 1420 00:53:10,240 --> 00:53:12,440 WAYS TO CONVINCE IRB TO DO THAT 1421 00:53:12,440 --> 00:53:14,200 IS SAFE TO DO AND COMMUNICATE 1422 00:53:14,200 --> 00:53:15,920 THAT EFFECTIVELY AND HAPPY TO 1423 00:53:15,920 --> 00:53:17,880 SHARE THAT PERSPECTIVE AND 1424 00:53:17,880 --> 00:53:19,360 CONVERSATIONS WE HAD OVER THE 1425 00:53:19,360 --> 00:53:20,880 YEARS AND THINK LOTS OF THE 1426 00:53:20,880 --> 00:53:23,680 THINKING IN THIS REPORT MIRRORS 1427 00:53:23,680 --> 00:53:25,320 MANY CONCERNS WE HEAR OFTEN AND 1428 00:53:25,320 --> 00:53:29,120 I HOPE THAT AS PART OF THIS 1429 00:53:29,120 --> 00:53:30,200 CONVERSATION, HOPEFULLY WHAT 1430 00:53:30,200 --> 00:53:32,640 COMES OUT OF IT IS NOT MAYBE HEY 1431 00:53:32,640 --> 00:53:35,200 WE NEED TO BE ALWAYS SO GUARDED 1432 00:53:35,200 --> 00:53:38,080 AND SUPER CAREFUL AND MAYBE 1433 00:53:38,080 --> 00:53:39,280 GETTING INTO DETAILS AS YOU SAID 1434 00:53:39,280 --> 00:53:41,680 AND WE CAN GIVE RESEARCHERS MORE 1435 00:53:41,680 --> 00:53:43,000 CONFIDENCE IF THEY CAN SORT OF 1436 00:53:43,000 --> 00:53:44,960 PUSH BOUNDARIES AND I THOUGHT 1437 00:53:44,960 --> 00:53:46,560 ABOUT THIS OVER THE WEEKEND IN 1438 00:53:46,560 --> 00:53:48,760 READING MORE THEMES IS, YOU 1439 00:53:48,760 --> 00:53:51,040 KNOW, IN INDUSTRY, LOTS OF THE 1440 00:53:51,040 --> 00:53:53,640 PRIVACY CONCERNS AND A LOT OF 1441 00:53:53,640 --> 00:53:56,280 ALLOWANCES ARE KIND OF DEFAULT 1442 00:53:56,280 --> 00:53:58,120 ON YOU KNOW OUR SOCIAL NETWORK 1443 00:53:58,120 --> 00:54:00,120 POSTS ARE BEING MINE THE FOR 1444 00:54:00,120 --> 00:54:02,600 SENTIMENT ANALYSIS AND NEXT TO 1445 00:54:02,600 --> 00:54:03,760 BE SHOWN YOU TO ON YOUR FEED 1446 00:54:03,760 --> 00:54:05,880 HAVING TO DO WITH THE WAY IN 1447 00:54:05,880 --> 00:54:07,760 WHICH IT HAS EXPONENTIALLY BLOWN 1448 00:54:07,760 --> 00:54:10,760 UP IN THE LAST HOUR AND YOUR 1449 00:54:10,760 --> 00:54:13,080 INTERACTIONS AS PART OF THAT AND 1450 00:54:13,080 --> 00:54:14,480 RESEARCH DEFAULTED OFF AND I 1451 00:54:14,480 --> 00:54:16,200 DON'T KNOW IF I WANT TO APPROACH 1452 00:54:16,200 --> 00:54:17,840 THAT AND COME UP TO THAT LINE 1453 00:54:17,840 --> 00:54:20,600 BECAUSE IT IS, YOU KNOW, 1454 00:54:20,600 --> 00:54:21,760 POTENTIALLY HAS A LITTLE GRAY 1455 00:54:21,760 --> 00:54:23,760 AREA THAT IS A LOT OF WORK AND 1456 00:54:23,760 --> 00:54:24,760 HOPE IS THINKING THROUGH THAT 1457 00:54:24,760 --> 00:54:27,600 AND SOME OF THE THEMES THAT WE 1458 00:54:27,600 --> 00:54:29,760 EMERGE WITH THE ABILITY TO GIVE 1459 00:54:29,760 --> 00:54:31,080 RESEARCH MORE TOOLS AND 1460 00:54:31,080 --> 00:54:32,760 CONFIDENCE TO KIND OF APPROACH 1461 00:54:32,760 --> 00:54:33,920 THAT LINE AS WELL. 1462 00:54:33,920 --> 00:54:37,040 >>THANKS SO MUCH, AARON. 1463 00:54:37,040 --> 00:54:39,080 REALLY, REALLY HELPFUL TO HEAR 1464 00:54:39,080 --> 00:54:40,560 YOUR INITIAL REACTIONS. 1465 00:54:40,560 --> 00:54:44,120 I WOULD LIKE TO DIVE A LITTLE 1466 00:54:44,120 --> 00:54:46,280 BIT DEEPER INTO -- INTO SOME 1467 00:54:46,280 --> 00:54:49,440 ISSUES WE HEARD ABOUT RELATED TO 1468 00:54:49,440 --> 00:54:50,480 TRANSPARENCY AND 1469 00:54:50,480 --> 00:54:51,840 TRUSTWORTHINESS. I THINK ONE OF 1470 00:54:51,840 --> 00:54:53,720 THE -- JEN, YOU BROUGHT THIS UP 1471 00:54:53,720 --> 00:54:55,840 AND OTHERS TOUCH ON IT AS WELL. 1472 00:54:55,840 --> 00:54:57,960 ONE THING THAT AS I WAS 1473 00:54:57,960 --> 00:54:59,480 REVIEWING FEEDBACK, I WAS SORT 1474 00:54:59,480 --> 00:55:00,680 OF THINKING ABOUT, WELL, WHAT 1475 00:55:00,680 --> 00:55:02,800 ARE WE HEARING THAT PEOPLE WANT; 1476 00:55:02,800 --> 00:55:03,920 RIGHT? 1477 00:55:03,920 --> 00:55:05,600 THEY ARE SORT OF WHAT THEY DON'T 1478 00:55:05,600 --> 00:55:07,080 WANT AND WHEN WE THINK ABOUT 1479 00:55:07,080 --> 00:55:09,400 WHAT THEY WANT ARE SOME THINGS 1480 00:55:09,400 --> 00:55:11,240 THAT CERTAINLY STOOD OUT FOR ME 1481 00:55:11,240 --> 00:55:14,480 WERE GREATER TRANSPARENCY. 1482 00:55:14,480 --> 00:55:17,000 AND GREATER TRUSTWORTHINESS OF 1483 00:55:17,000 --> 00:55:18,880 PEOPLE THAT ARE HANDLING AND 1484 00:55:18,880 --> 00:55:21,280 MANAGING AND WORKING WITH 1485 00:55:21,280 --> 00:55:23,480 PERSONAL HEALTH DATA. 1486 00:55:23,480 --> 00:55:25,480 AND I'M CURIOUS HOW, KIND OF 1487 00:55:25,480 --> 00:55:27,920 GOING A LITTLE DEEPER, HOW THIS 1488 00:55:27,920 --> 00:55:31,080 THEME OF WHAT PEOPLE WANT MAY BE 1489 00:55:31,080 --> 00:55:33,760 SPECIFICALLY FOCUSED ON 1490 00:55:33,760 --> 00:55:35,200 TRANSPARENCY AND TRUSTWORTHINESS 1491 00:55:35,200 --> 00:55:36,840 AND HOW IT RESONATES WITH YOU AS 1492 00:55:36,840 --> 00:55:39,280 WELL AS WHAT YOU THINK STEPS ARE 1493 00:55:39,280 --> 00:55:41,200 THAT WE COULD THINK ABOUT TAKING 1494 00:55:41,200 --> 00:55:42,480 OR RESEARCH ENTERPRISE COULD 1495 00:55:42,480 --> 00:55:44,600 THINK ABOUT TAKING TO SORT OF 1496 00:55:44,600 --> 00:55:46,160 MAYBE BEGIN TO DELIVER ON THESE 1497 00:55:46,160 --> 00:55:47,680 THEMES A BIT MORE. 1498 00:55:47,680 --> 00:55:50,000 AND SO I WILL GO AHEAD AND START 1499 00:55:50,000 --> 00:55:52,000 WITH JEN. I WANT TO HEAR FROM 1500 00:55:52,000 --> 00:55:53,960 ALL OF YOU. 1501 00:55:53,960 --> 00:55:55,520 >>YEAH. TRANSPARENCY IS 1502 00:55:55,520 --> 00:55:56,840 SOMETHING THAT HAS COME UP QUITE 1503 00:55:56,840 --> 00:55:59,800 A BIT IN MY WORK AT GUYS INGER 1504 00:55:59,800 --> 00:56:01,680 AND PENN STATE AS WELL. I 1505 00:56:01,680 --> 00:56:03,520 THINK, AGAIN, IT COMES DOWN TO 1506 00:56:03,520 --> 00:56:04,920 WHAT EXACTLY ARE WE TALKING 1507 00:56:04,920 --> 00:56:05,400 ABOUT? 1508 00:56:05,400 --> 00:56:07,880 IT IS USEFUL TO TELL PEOPLE, 1509 00:56:07,880 --> 00:56:10,560 OKAY. HERE IS DATA THAT WE ARE 1510 00:56:10,560 --> 00:56:12,760 COLLECTING OR DATA WE ARE USING 1511 00:56:12,760 --> 00:56:14,200 OR DATA WE ARE SHARING OR HOW WE 1512 00:56:14,200 --> 00:56:16,560 ARE DOING THAT AND RESEARCH 1513 00:56:16,560 --> 00:56:18,960 PROJECTS THAT THEY ARE INVOLVED 1514 00:56:18,960 --> 00:56:20,920 AND RESEARCHERS IT THAT ARE 1515 00:56:20,920 --> 00:56:22,520 LEADING RESEARCH PROJECTS AND 1516 00:56:22,520 --> 00:56:24,000 NEED TO MEET PEOPLE WHERE THEY 1517 00:56:24,000 --> 00:56:26,480 ARE WHEN THEY SAY THEY WANT 1518 00:56:26,480 --> 00:56:27,400 TRANSPARENCY DOESN'T NECESSARILY 1519 00:56:27,400 --> 00:56:29,520 TRANSLATE INTO THEM SAYING WE 1520 00:56:29,520 --> 00:56:32,160 WANT EVERY DETAIL ABOUT THIS 1521 00:56:32,160 --> 00:56:33,920 ENDEAVOR NOW AND FOREVERMORE; 1522 00:56:33,920 --> 00:56:34,520 RIGHT? 1523 00:56:34,520 --> 00:56:37,200 SOMETIMES THAT DATA DUMP OR 1524 00:56:37,200 --> 00:56:39,080 INFORMATION DUMP BURIES THE 1525 00:56:39,080 --> 00:56:40,560 LEAGUE AND DOESN'T REALLY HELP 1526 00:56:40,560 --> 00:56:41,320 THEM OR SATISFY THAT INTEREST 1527 00:56:41,320 --> 00:56:42,880 THAT THEY HAVE. SO, WHEN I SAY, 1528 00:56:42,880 --> 00:56:45,280 YOU KNOW, WE NEED TO DO HARD 1529 00:56:45,280 --> 00:56:46,920 WORK AND TIME CONSUMING WORK OF 1530 00:56:46,920 --> 00:56:48,880 UNDERSTANDING THOSE DETAILS IS 1531 00:56:48,880 --> 00:56:50,200 ACTUALLY WELL WHAT ARE THEY 1532 00:56:50,200 --> 00:56:51,560 ACTUALLY LOOKING FOR? 1533 00:56:51,560 --> 00:56:53,080 WHAT DO THEY ACTUALLY -- THE 1534 00:56:53,080 --> 00:56:54,560 INFORMATION THEY WANT AND NEED 1535 00:56:54,560 --> 00:56:58,200 TO MAKE DECISIONS ABOUT WHETHER 1536 00:56:58,200 --> 00:57:00,720 THEY SUPPORT A PARTICULAR EFFORT 1537 00:57:00,720 --> 00:57:02,680 OR NOT AND ALSO THE MAGNITUDE OF 1538 00:57:02,680 --> 00:57:04,800 THAT SUPPORT OR OPPOSITION AND I 1539 00:57:04,800 --> 00:57:07,120 HAVE ONGOING UNPUBLISHED WORK 1540 00:57:07,120 --> 00:57:09,560 THAT NOW I'M FEELING QUITE 1541 00:57:09,560 --> 00:57:13,080 MOTIVATED TO PUBLISH THIS DATA 1542 00:57:13,080 --> 00:57:15,320 ON AND THINKING ABOUT THE 1543 00:57:15,320 --> 00:57:16,920 QUESTION WHAT IS HEALTH RESEARCH 1544 00:57:16,920 --> 00:57:18,680 WHEN WE AS EXPERTS IN THE ROOM 1545 00:57:18,680 --> 00:57:21,200 TALK ABOUT HEALTH RESEARCHES 1546 00:57:21,200 --> 00:57:23,520 COULD BE A MUCH BROADER ENDEAVOR 1547 00:57:23,520 --> 00:57:25,720 THAN SOMEONE NOT ENGAGED IN THIS 1548 00:57:25,720 --> 00:57:27,240 AS A PROFESSION IS THINKING 1549 00:57:27,240 --> 00:57:28,760 ABOUT AND I HAVE CONCERNS ABOUT 1550 00:57:28,760 --> 00:57:31,120 TYPES OF DATA THAT WE WILL GET 1551 00:57:31,120 --> 00:57:33,200 INTO LATER AND IN TERMS OF 1552 00:57:33,200 --> 00:57:35,400 TANGIBLE STEPS WE CAN TAKE, I 1553 00:57:35,400 --> 00:57:37,920 REALLY DO THINK IT IS DIGGING A 1554 00:57:37,920 --> 00:57:39,560 LITTLE DEEPER AND WHAT WE MEAN 1555 00:57:39,560 --> 00:57:42,080 ABOUT TRANSPARENCY AND HOW WE GO 1556 00:57:42,080 --> 00:57:43,640 ABOUT THAT AND AMOUNT OF 1557 00:57:43,640 --> 00:57:45,120 INFORMATION IS NOT NECESSARILY 1558 00:57:45,120 --> 00:57:46,200 THE SOLUTION. 1559 00:57:46,200 --> 00:57:50,520 >>ABSOLUTELY. THANKS SO MUCH. 1560 00:57:50,520 --> 00:57:52,720 ANY OF YOU? 1561 00:57:52,720 --> 00:57:54,800 ANY THAT WOULD LIKE TO CHIME IN? 1562 00:57:54,800 --> 00:57:58,040 >>I CAN GO. SO, I REALIZED 1563 00:57:58,040 --> 00:58:00,000 THAT I DID NOT GIVE THE CONTEXT 1564 00:58:00,000 --> 00:58:04,400 OF WHERE I -- MY LENS IN THIS 1565 00:58:04,400 --> 00:58:05,600 WORK. 1566 00:58:05,600 --> 00:58:08,440 SO, DEFINITELY FROM A COMMUNITY 1567 00:58:08,440 --> 00:58:10,200 ENGAGEMENT PERSPECTIVE HAVING 1568 00:58:10,200 --> 00:58:12,600 WORKED ON ALL OF US PROGRAM FOR 1569 00:58:12,600 --> 00:58:14,440 FIVE YEARS DIRECTLY DOG OUTREACH 1570 00:58:14,440 --> 00:58:18,000 AND IMPROVEMENT AND SERVING ON 1571 00:58:18,000 --> 00:58:20,080 GREATER HARLEM CHAMBER OF 1572 00:58:20,080 --> 00:58:22,720 COMMERCE IN COVID-19 PROGRAM TO 1573 00:58:22,720 --> 00:58:24,240 ADDRESS LOW VACCINATION RATES 1574 00:58:24,240 --> 00:58:25,600 AND SETTING THAT IN TERMS OF 1575 00:58:25,600 --> 00:58:29,800 WHERE MY LENS COMES FROM SOME OF 1576 00:58:29,800 --> 00:58:31,360 THIS WORK AND TO YOUR QUESTION 1577 00:58:31,360 --> 00:58:34,200 ABOUT AND IN TERMS WHAT PEOPLE 1578 00:58:34,200 --> 00:58:36,000 WANT AND THINKING ABOUT WHAT JEN 1579 00:58:36,000 --> 00:58:39,760 JUST SAID. WHEN I THINK ABOUT 1580 00:58:39,760 --> 00:58:42,040 THIS QUESTION OF 1581 00:58:42,040 --> 00:58:43,320 TRUSTWORTHINESS, ONE, THERE 1582 00:58:43,320 --> 00:58:45,440 NEEDS TO BE ADDITIONAL COMMUNITY 1583 00:58:45,440 --> 00:58:48,360 ENGAGEMENT TO DEFINE WHAT THAT 1584 00:58:48,360 --> 00:58:50,680 ACTUALLY MEANS FOR PEOPLE. 1585 00:58:50,680 --> 00:58:55,040 IT IS -- IT IS VERY, VERY 1586 00:58:55,040 --> 00:58:56,200 COMPLICATED. 1587 00:58:56,200 --> 00:58:57,720 YOU KNOW ON SOME LEVEL OF 1588 00:58:57,720 --> 00:58:59,920 THINKING ABOUT THE FACT THAT WE 1589 00:58:59,920 --> 00:59:03,760 HAVE A CONSENT PROCESS AND ON 1590 00:59:03,760 --> 00:59:05,840 SOME LEVEL THIS IDEA SOMEWHERE 1591 00:59:05,840 --> 00:59:08,520 THAT IS NOT OUR TRUSTWORTHY 1592 00:59:08,520 --> 00:59:10,360 PROCESS AND WHEN YOU ARE CLEARLY 1593 00:59:10,360 --> 00:59:12,560 TALKING AND ENGAGING WITH 1594 00:59:12,560 --> 00:59:13,920 COMMUNITIES IT IS NOT ENOUGH. 1595 00:59:13,920 --> 00:59:15,520 MY INITIAL THOUGHT IS REALLY 1596 00:59:15,520 --> 00:59:19,120 GOING BACK TO COMMUNITIES IN A 1597 00:59:19,120 --> 00:59:21,400 DEEPER DIVE TO ASK WHAT 1598 00:59:21,400 --> 00:59:24,400 TRUSTWORTHINESS WOULD LOOK LIKE 1599 00:59:24,400 --> 00:59:26,200 FOR THEM IS REALLY IMPORTANT. 1600 00:59:26,200 --> 00:59:28,120 I TOTALLY AGREE WITH JEN IN 1601 00:59:28,120 --> 00:59:32,040 TERMS OF TRANSPARENCY IS NOT 1602 00:59:32,040 --> 00:59:34,200 THIS JUMP OF DATA THAT CAN 1603 00:59:34,200 --> 00:59:35,720 CONFUSE PEOPLE AND MIGHT EVEN BE 1604 00:59:35,720 --> 00:59:39,560 AREAS THAT THEY ARE NOT REALLY 1605 00:59:39,560 --> 00:59:40,360 CONCERNED ABOUT. 1606 00:59:40,360 --> 00:59:42,200 YOU HAVE TO GOO BACK TO THE 1607 00:59:42,200 --> 00:59:44,400 FIRST QUESTION HOW WE DEFINE 1608 00:59:44,400 --> 00:59:46,200 TRUSTWORTHINESS AND WHAT IT 1609 00:59:46,200 --> 00:59:48,520 LOOKS LIKE IN YOUR COMMUNITY. 1610 00:59:48,520 --> 00:59:52,240 I THINK WE CAN START TO MOVE TO 1611 00:59:52,240 --> 00:59:53,000 ANOTHER POSITIVE STEP. 1612 00:59:53,000 --> 00:59:55,520 >>I LOVE THAT IDEA ABOUT DIVING 1613 00:59:55,520 --> 00:59:57,880 DEEPER INTO, YOU KNOW, WHAT DO 1614 00:59:57,880 --> 01:00:02,120 PEOPLE MEAN WHEN THEY SAY 1615 01:00:02,120 --> 01:00:05,640 TRUSTWORTHY; RIGHT? 1616 01:00:05,640 --> 01:00:07,640 UNDOUBT THELY IT MEANS DIFFERENT 1617 01:00:07,640 --> 01:00:09,720 THINGS TO DIFFERENT PEOPLE; 1618 01:00:09,720 --> 01:00:11,480 RIGHT? 1619 01:00:11,480 --> 01:00:11,720 RUPA? 1620 01:00:11,720 --> 01:00:12,760 >>I APPRECIATE BOTH YOUR POINTS 1621 01:00:12,760 --> 01:00:14,920 AND THINK ABOUT IT AS TWO 1622 01:00:14,920 --> 01:00:16,560 COMPONENT WUNZ AS AGENCY FROM 1623 01:00:16,560 --> 01:00:18,160 COMMUNITY AND DEMYSTIFICATION. 1624 01:00:18,160 --> 01:00:20,600 I THINK THAT THE AGENCY PART OF 1625 01:00:20,600 --> 01:00:22,760 THE TRUSTWORTHINESS IS STARTING 1626 01:00:22,760 --> 01:00:24,240 EARLY ON IN RESEARCH PROCESS AND 1627 01:00:24,240 --> 01:00:25,960 WHAT TYPES OF QUESTIONS ARE 1628 01:00:25,960 --> 01:00:27,920 BEING ASKED IN RESEARCH AND 1629 01:00:27,920 --> 01:00:29,040 TRUST FROM COMMUNITIES IN 1630 01:00:29,040 --> 01:00:31,080 QUESTIONS WE ARE ASKING THAT ARE 1631 01:00:31,080 --> 01:00:33,120 QUESTIONS THAT MATTER TO THEM 1632 01:00:33,120 --> 01:00:34,960 AND TRUSTWORTHINESS STARTS 1633 01:00:34,960 --> 01:00:36,600 REALLY AT THE BEGINNING AND 1634 01:00:36,600 --> 01:00:38,760 ECHOING THIS POINT ABOUT WHAT IT 1635 01:00:38,760 --> 01:00:41,040 MEANS TO DEMYSTIFY THE BLACK BOX 1636 01:00:41,040 --> 01:00:42,360 AND EVERYTHING FROM WHAT TYPE OF 1637 01:00:42,360 --> 01:00:44,480 DATA WE ARE COLLECTING AND WHY 1638 01:00:44,480 --> 01:00:45,680 AND QUESTION COMES FROM 1639 01:00:45,680 --> 01:00:48,000 COMMUNITY AND WHY BECOMES MUCH 1640 01:00:48,000 --> 01:00:50,080 CLEAR AND WHAT IS HAPPENING WITH 1641 01:00:50,080 --> 01:00:52,200 DATA AND WHAT ARE RESULTS AND 1642 01:00:52,200 --> 01:00:53,600 ACTIONS BEING TAKEN BASED ON 1643 01:00:53,600 --> 01:00:55,200 THAT AND LAST PART OF THE CHAIN 1644 01:00:55,200 --> 01:00:57,640 IS IMPORTANT IN TERMS OF 1645 01:00:57,640 --> 01:00:58,800 TRUSTWORTHINESS AND BACK TO THE 1646 01:00:58,800 --> 01:01:00,560 IDEA OF VALUE FOR THE COMMUNITY 1647 01:01:00,560 --> 01:01:02,440 UNDERSTANDING FROM A COMMUNITY 1648 01:01:02,440 --> 01:01:06,200 PERSPECTIVE WHAT IS CHANGING 1649 01:01:06,200 --> 01:01:09,760 BASED ON MY PARTICIPATION IN 1650 01:01:09,760 --> 01:01:15,280 THIS RESEARCH. 1651 01:01:15,280 --> 01:01:17,840 I LIVE IN SAN DIEGO THIS WEEKEND 1652 01:01:17,840 --> 01:01:20,760 IT RAINED LIKE CRAZY EVERYBODY 1653 01:01:20,760 --> 01:01:23,520 TOOK THEIR KIDS TO THE SCIENCE 1654 01:01:23,520 --> 01:01:25,400 MUSEUM. WE HAD NO PLACE ELSE TO 1655 01:01:25,400 --> 01:01:27,800 TAKE THEM. WE WAITED IN A HUGE 1656 01:01:27,800 --> 01:01:30,200 LINE FOR ONE OF THE THINGS. A 1657 01:01:30,200 --> 01:01:32,360 GROUP OF STUDENTS RIGHT THERE 1658 01:01:32,360 --> 01:01:34,280 WEARING UC SAN DIEGO SHIRTS AND 1659 01:01:34,280 --> 01:01:36,480 LIKE DO YOU WANT TO BE PART OF 1660 01:01:36,480 --> 01:01:38,560 OUR RESEARCH STUDY WE NEED 5 TO 1661 01:01:38,560 --> 01:01:41,520 8 YEAR OLDS. I HAVE AN 8 YEAR 1662 01:01:41,520 --> 01:01:43,720 OLD. WE OF COURSE SAID SURE. 1663 01:01:43,720 --> 01:01:46,400 WE WALKED UP TO THEM. ONE-PAGE 1664 01:01:46,400 --> 01:01:49,320 CONSENT FORM AND WE -- I WENT TO 1665 01:01:49,320 --> 01:01:51,000 UCSD AND MY WIFE WORKED ON 1666 01:01:51,000 --> 01:01:53,240 CAMPUS FOR BETTER PART OF A 1667 01:01:53,240 --> 01:01:55,120 DECADE AND VERY MUCH FELT 1668 01:01:55,120 --> 01:01:56,920 COMFORTABLE WITH IT UNDERGRAD OR 1669 01:01:56,920 --> 01:01:59,200 GRADUATE STUDENTS EXPLAIN THE 1670 01:01:59,200 --> 01:02:00,840 OPTIONALLY WE COULD VIDEOTAPE 1671 01:02:00,840 --> 01:02:03,720 AND THEY WERE GOING TO DO 1672 01:02:03,720 --> 01:02:05,000 EXPERIMENT LOOKING AT DIFFERENT 1673 01:02:05,000 --> 01:02:06,200 PERSONALITY TRAITS WITHIN OUR 1674 01:02:06,200 --> 01:02:08,720 CHILD. YOU KNOW, WE -- WE AT 1675 01:02:08,720 --> 01:02:10,720 THE END WOULD GET A STICKER OR 1676 01:02:10,720 --> 01:02:11,680 SOMETHING; RIGHT? 1677 01:02:11,680 --> 01:02:13,480 THEY WOULD BASICALLY VIDEO TAPE 1678 01:02:13,480 --> 01:02:14,680 FROM HERE DOWN AND WOULDN'T BE 1679 01:02:14,680 --> 01:02:17,360 ANY SORT OF USE OF OUR KID'S 1680 01:02:17,360 --> 01:02:18,920 FACES JUST FOR [INDISCERNIBLE]. 1681 01:02:18,920 --> 01:02:20,960 IT WAS AN ENJOYABLE EXPERIENCE 1682 01:02:20,960 --> 01:02:23,320 WE LEARNED OUR KID IS VERY 1683 01:02:23,320 --> 01:02:25,440 HIGH-RISK AVERSE AND SHE 1684 01:02:25,440 --> 01:02:27,560 EXHIBITS HIGH TRAITS FOR DELAYED 1685 01:02:27,560 --> 01:02:29,480 GRATIFICATION. SO, SHE WILL 1686 01:02:29,480 --> 01:02:30,840 POSTPONE GETTING SOMETHING NOW 1687 01:02:30,840 --> 01:02:32,200 FOR SOMETHING LATER AND THOUGHT 1688 01:02:32,200 --> 01:02:33,800 IT WAS A GREAT METAPHOR FOR 1689 01:02:33,800 --> 01:02:35,280 EVERYTHING WE ARE TALKING ABOUT 1690 01:02:35,280 --> 01:02:37,040 MEETING US EXACTLY WHERE WE 1691 01:02:37,040 --> 01:02:38,760 WERE. AS PARENTS OBVIOUSLY WITH 1692 01:02:38,760 --> 01:02:40,760 AN INVESTMENT IN WANTING TO 1693 01:02:40,760 --> 01:02:42,360 UNDERSTAND OUR KIDS BETTER AND 1694 01:02:42,360 --> 01:02:43,240 GOT IMMEDIATE RESULTS FROM IT 1695 01:02:43,240 --> 01:02:45,360 AND ENGAGED AND HAD BENEFIT FROM 1696 01:02:45,360 --> 01:02:48,120 BEING PART OF THIS STUDY AND WE 1697 01:02:48,120 --> 01:02:49,520 WERE WITHOUT SOMETHING TO DO AND 1698 01:02:49,520 --> 01:02:52,080 HAD HIGH TRUST FOR KIDS RUNNING 1699 01:02:52,080 --> 01:02:54,200 THIS STUDY AND YOU KNOW WE WR 1700 01:02:54,200 --> 01:02:56,720 SORT OF ABLE TO SORT OF PICK AND 1701 01:02:56,720 --> 01:02:59,120 CHOOSE THE VARIED SORT OF WAYS 1702 01:02:59,120 --> 01:03:01,880 IN WHICH WE WERE ABLE TO 1703 01:03:01,880 --> 01:03:04,040 CONTRIBUTE DATA TO THE STUDY AND 1704 01:03:04,040 --> 01:03:05,320 OPTIONALLY CHECK BOX TO BE PART 1705 01:03:05,320 --> 01:03:07,800 OF FUTURE STUDIES WHICH WE DID 1706 01:03:07,800 --> 01:03:09,400 DO. I THINK THAT MIRRORS LOTS 1707 01:03:09,400 --> 01:03:11,040 OF WHAT WE ARE TALKING ABOUT 1708 01:03:11,040 --> 01:03:12,400 HERE AND THAT IS EXACTLY AND I 1709 01:03:12,400 --> 01:03:15,040 WAS SO IMPRESSED AND EXACTLY THE 1710 01:03:15,040 --> 01:03:17,680 MODEL WE HAVE TO KEEP IN MIND 1711 01:03:17,680 --> 01:03:18,120 FOR EVERYTHING. 1712 01:03:18,120 --> 01:03:20,960 >>THANKS SO MUCH. I THINK LOT 1713 01:03:20,960 --> 01:03:22,120 OF CRITICAL POINTS BEING RAISE 1714 01:03:22,120 --> 01:03:24,800 THE ABOUT TRANSPARENCY AND 1715 01:03:24,800 --> 01:03:26,040 TRUSTWORTHINESS IN THE RESEARCH 1716 01:03:26,040 --> 01:03:27,080 ENTERPRISE; RIGHT? 1717 01:03:27,080 --> 01:03:29,280 I WANT TO JUST FOLLOW UP THIS 1718 01:03:29,280 --> 01:03:31,280 IDEA WITH YOU ALL FOR A MOMENT. 1719 01:03:31,280 --> 01:03:33,560 IN ELATION TO THE TOPIC OF THIS 1720 01:03:33,560 --> 01:03:34,400 PANEL; RIGHT? 1721 01:03:34,400 --> 01:03:39,600 HERE, WE ARE TALKING ABOUT THIS 1722 01:03:39,600 --> 01:03:44,400 ISSUE OF USE OF NOVEL DATA TYPES 1723 01:03:44,400 --> 01:03:47,640 GENERATED OUTSIDE OF THE HEALTH 1724 01:03:47,640 --> 01:03:51,800 CARE SYSTEM AND OUTSIDE OF 1725 01:03:51,800 --> 01:03:53,480 TRADITIONAL HEALTH -- THIS SPACE 1726 01:03:53,480 --> 01:03:55,920 OF INDUSTRY IT IS INDUSTRY BUT 1727 01:03:55,920 --> 01:03:57,400 FORUMS LIKE SOCIAL MEDIA AND SO 1728 01:03:57,400 --> 01:03:58,800 ON AND SO FORTH. 1729 01:03:58,800 --> 01:04:01,320 I -- JUST FOR A MOMENT I WANT 1730 01:04:01,320 --> 01:04:03,760 TODAY PROBE DEEPER AND SEE IF -- 1731 01:04:03,760 --> 01:04:05,960 IF YOU ANY -- IF ANY WOULD ADD 1732 01:04:05,960 --> 01:04:07,360 MORE TO YOUR REMARKS IF YOU 1733 01:04:07,360 --> 01:04:10,760 WOULD THINK ABOUT ISSUES OF 1734 01:04:10,760 --> 01:04:12,240 TRANSPARENCY AND TRUSTWORTHINESS 1735 01:04:12,240 --> 01:04:14,120 PARTICULARLY AS THEY RELATE TO 1736 01:04:14,120 --> 01:04:18,200 THINGS SORT OF OUTSIDE OF OUR 1737 01:04:18,200 --> 01:04:23,760 TRADITIONAL RESEARCH STRUCTURES. 1738 01:04:23,760 --> 01:04:26,200 >>I CAN GO FIRST. SO, IT IS AN 1739 01:04:26,200 --> 01:04:27,800 INTERESTING QUESTION; RIGHT? 1740 01:04:27,800 --> 01:04:30,440 I GOT MY START IN ACADEMIC 1741 01:04:30,440 --> 01:04:33,600 RESEARCH ON DIRECT TO CONSUMER 1742 01:04:33,600 --> 01:04:35,800 GENETIC ANCESTRY TESTING A NOVEL 1743 01:04:35,800 --> 01:04:38,600 TYPE OF DATA AND NOVEL TYPE OF 1744 01:04:38,600 --> 01:04:40,240 ENDEAVOR OUTSIDE OF THE 1745 01:04:40,240 --> 01:04:41,280 TRADITIONAL CLINICAL SETTING 1746 01:04:41,280 --> 01:04:42,480 THAT RAISE THE LOTS OF QUESTIONS 1747 01:04:42,480 --> 01:04:45,520 AND WAS 20 YEARS AGO. HOW FAR 1748 01:04:45,520 --> 01:04:47,400 WE HAVE COME YET STILL STAYED IN 1749 01:04:47,400 --> 01:04:49,480 THE SAME PLACE AND I WORRY ABOUT 1750 01:04:49,480 --> 01:04:52,000 FIXATION ON NEW DATA TYPES AND I 1751 01:04:52,000 --> 01:04:54,840 WORRY ABOUT OUR FIXATION ON 1752 01:04:54,840 --> 01:04:55,680 TRADITIONAL CLINICAL CARE 1753 01:04:55,680 --> 01:04:57,400 SETTING AND THINK WE NEED TO 1754 01:04:57,400 --> 01:04:58,680 MOVE FORWARD AND THINK ABOUT THE 1755 01:04:58,680 --> 01:05:01,320 FUTURE AND, YOU KNOW, NO THE TO 1756 01:05:01,320 --> 01:05:04,680 SOUND CLICHE BUT FUTURE IS HERE 1757 01:05:04,680 --> 01:05:06,320 WHETHER OUR FRAMEWORKS FOR 1758 01:05:06,320 --> 01:05:08,160 DEALING WITH THAT ARE ADAPTED TO 1759 01:05:08,160 --> 01:05:10,120 THAT OR NOT. 1760 01:05:10,120 --> 01:05:14,960 SO, I THINK THAT WE CAN DO 1761 01:05:14,960 --> 01:05:16,480 OURSELVES A DISSERVICE BY 1762 01:05:16,480 --> 01:05:19,120 FOCUSING ON TYPES OF DATA AND 1763 01:05:19,120 --> 01:05:20,280 TRADITIONAL CLINICAL CARE 1764 01:05:20,280 --> 01:05:21,080 CONTEXT. 1765 01:05:21,080 --> 01:05:22,840 I THINK IT IS MORE ALIGNED WITH 1766 01:05:22,840 --> 01:05:25,640 WHAT EXACTLY ARE WE DOING WITH 1767 01:05:25,640 --> 01:05:26,360 THOSE DATA? 1768 01:05:26,360 --> 01:05:28,160 WHAT WE SAY WE WILL DO. WHAT WE 1769 01:05:28,160 --> 01:05:31,080 ARE ACTUALLY DOING AND RISK OF 1770 01:05:31,080 --> 01:05:32,520 HARM THAT COMES FROM THAT. AND 1771 01:05:32,520 --> 01:05:34,000 MAKING SURE WE HAVE PROCEDURES 1772 01:05:34,000 --> 01:05:36,280 IN PLACE TO MAKE SURE THEY ARE 1773 01:05:36,280 --> 01:05:38,240 ADEQUATE REMEDIES WHEN THINGS GO 1774 01:05:38,240 --> 01:05:40,440 WRONG AND WE HAVE ADEQUATE 1775 01:05:40,440 --> 01:05:41,640 OVERSIGHT TO MAKE SURE PEOPLE DO 1776 01:05:41,640 --> 01:05:43,520 WHAT THEY PROMISED THEY WILL DO 1777 01:05:43,520 --> 01:05:45,840 WITH THOSE DATA. FOR ME, I 1778 01:05:45,840 --> 01:05:49,760 THINK WE NEED A RECALIBRATION. 1779 01:05:49,760 --> 01:05:52,240 THAT IS, PERHAPS, A PERSPECTIVE 1780 01:05:52,240 --> 01:05:56,560 THAT IS DRIVEN BY ME BEING IN A 1781 01:05:56,560 --> 01:05:57,720 MULTI-DISCIPLINARY SPACE AND I 1782 01:05:57,720 --> 01:05:59,680 NEVER FELT SQUARELY IN 1783 01:05:59,680 --> 01:06:00,920 DISCIPLINE OR ANY WORK SQUARELY 1784 01:06:00,920 --> 01:06:02,560 IN ONE SPACE AND THINK I FEEL 1785 01:06:02,560 --> 01:06:04,960 MORE COMFORTABLE WITH THAT GRAY 1786 01:06:04,960 --> 01:06:06,680 ZONE AND LACK OF DEFINITION. 1787 01:06:06,680 --> 01:06:08,480 AND KNOWING THAT IS EXACTLY 1788 01:06:08,480 --> 01:06:10,280 WHERE WE NEED TO BE KIND OF 1789 01:06:10,280 --> 01:06:11,480 PLAYING AND WORKING. 1790 01:06:11,480 --> 01:06:14,040 SO, I WOULD LIKE TO SEE US KIND 1791 01:06:14,040 --> 01:06:15,560 OF GO BEYOND THE TYPES. 1792 01:06:15,560 --> 01:06:18,920 I THINK THAT WE ARE SEEING THAT, 1793 01:06:18,920 --> 01:06:20,760 ALSO, BE A CONCEPT ADVANCED JUST 1794 01:06:20,760 --> 01:06:22,960 IN DATA PRIVACY AND DATA 1795 01:06:22,960 --> 01:06:25,120 PROTECTION AND LAW REFORM AS 1796 01:06:25,120 --> 01:06:25,680 WELL. 1797 01:06:25,680 --> 01:06:28,600 THIS MAYBE WE WILL GET INTO IT A 1798 01:06:28,600 --> 01:06:30,800 LITTLE LATER AND SECRECY 1799 01:06:30,800 --> 01:06:31,600 PARADIGM NOT WORKING FOR 1800 01:06:31,600 --> 01:06:33,840 INFORMATION PRIVACY IN ANY 1801 01:06:33,840 --> 01:06:35,440 CONTEXT LET ALONE HEALTH 1802 01:06:35,440 --> 01:06:36,960 RESEARCH SETTING AND ALSO 1803 01:06:36,960 --> 01:06:39,200 UNDERSTANDING, YOU KNOW, RISKS 1804 01:06:39,200 --> 01:06:41,080 THAT COME ALONG WITH DATA 1805 01:06:41,080 --> 01:06:43,480 VALENCE OF DATA POOR AND DATA 1806 01:06:43,480 --> 01:06:45,840 RICH AND HOW THAT MIGHT 1807 01:06:45,840 --> 01:06:47,320 EXACERBATE DISPARITIES. 1808 01:06:47,320 --> 01:06:49,200 >>THANK YOU. YEAH. I LOVE 1809 01:06:49,200 --> 01:06:50,840 YOUR PUSHBACK ABOUT KIND OF LIKE 1810 01:06:50,840 --> 01:06:52,960 THE FOCUS OF DATA TYPES. 1811 01:06:52,960 --> 01:06:54,800 I HAVE A COLLEAGUE FOR MANY 1812 01:06:54,800 --> 01:06:57,160 YEARS WHO IS A MENTOR OF MINE 1813 01:06:57,160 --> 01:06:59,000 THAT IS VERY FOND OF SAYING ALL 1814 01:06:59,000 --> 01:07:01,600 DATA ARE HEALTH DATA. THAT HAS 1815 01:07:01,600 --> 01:07:03,200 REALLY STUCK WITH ME OVER THE 1816 01:07:03,200 --> 01:07:04,840 YEARS, YOU KNOW, THAT ALL OF THE 1817 01:07:04,840 --> 01:07:06,840 DATA ABOUT US CAN POTENTIALLY 1818 01:07:06,840 --> 01:07:07,920 INFORM OUR HEALTH. 1819 01:07:07,920 --> 01:07:09,320 WHAT DOES IT MEAN FOR SOME OF 1820 01:07:09,320 --> 01:07:10,840 THE DISCUSSIONS WE ARE TRYING TO 1821 01:07:10,840 --> 01:07:12,000 HAVE HERE TODAY. 1822 01:07:12,000 --> 01:07:16,200 >>YOU SAW ME PUSH BACK EARLIER 1823 01:07:16,200 --> 01:07:17,080 IN MY CAREER ABOUT INFORMATION 1824 01:07:17,080 --> 01:07:19,640 OF GENOME GENOMIC INFORMATION IS 1825 01:07:19,640 --> 01:07:21,520 NOT ALWAYS HEALTH INFORMATION 1826 01:07:21,520 --> 01:07:23,480 CONTEXT IN TERMS DH YOU ARE 1827 01:07:23,480 --> 01:07:25,600 SETTING IT TO APPLY IT THAT 1828 01:07:25,600 --> 01:07:26,160 GIVES IT. 1829 01:07:26,160 --> 01:07:28,480 >>ABSOLUTELY. OTHER THOUGHTS? 1830 01:07:28,480 --> 01:07:30,560 >>OTHER THOUGHT IS THIS IDEA OF 1831 01:07:30,560 --> 01:07:32,840 TRANSPARENCY AND THINKING ABOUT 1832 01:07:32,840 --> 01:07:34,640 NEW DATA TYPES AND USING THAT 1833 01:07:34,640 --> 01:07:36,360 FRAMEWORK OR DATA TYPES WE HAVE 1834 01:07:36,360 --> 01:07:38,200 NOT BEEN USING IN RESEARCH FOR 1835 01:07:38,200 --> 01:07:41,840 -- WHEN I STARTED TO USE WORK IN 1836 01:07:41,840 --> 01:07:43,240 SOCIAL MEDIA DATA IT WAS EARLY 1837 01:07:43,240 --> 01:07:45,320 IN PROCESS OF USING THAT FOR 1838 01:07:45,320 --> 01:07:46,560 RESEARCH AND IN CONTEXT WORKING 1839 01:07:46,560 --> 01:07:49,080 WITH IRB THERE WAS LOTS OF 1840 01:07:49,080 --> 01:07:50,400 UNCERTAINTIES ABOUT WHAT WAS 1841 01:07:50,400 --> 01:07:52,560 ALLOWABLE OR NOT ALLOWABLE AND 1842 01:07:52,560 --> 01:07:54,120 RISKS TO PEOPLE PARTICIPATING, 1843 01:07:54,120 --> 01:07:56,040 THEY WERE REALLY UNCLEAR. WE 1844 01:07:56,040 --> 01:07:58,760 NEED TO BE VERY TRANSPARENT 1845 01:07:58,760 --> 01:08:00,440 ABOUT THAT AND WHAT DO WE 1846 01:08:00,440 --> 01:08:02,160 ACTUALLY KNOW ORE NOT KNOW ABOUT 1847 01:08:02,160 --> 01:08:04,840 RISKS AND FACT THERE IS RISK 1848 01:08:04,840 --> 01:08:05,640 INVOLVED THERE AND LET 1849 01:08:05,640 --> 01:08:06,720 INDIVIDUALS DECIDE FOR 1850 01:08:06,720 --> 01:08:08,160 THEMSELVES IF THEY ARE WILLING 1851 01:08:08,160 --> 01:08:10,800 TO TAKE ON THAT RISK AND 1852 01:08:10,800 --> 01:08:12,360 COMPLEMENT TO THAT THEN IS IF 1853 01:08:12,360 --> 01:08:14,680 THERE ARE UNINTENDED 1854 01:08:14,680 --> 01:08:15,400 CONSEQUENCES WHAT IS OUR 1855 01:08:15,400 --> 01:08:17,240 RESPONSIBILITY AS RESEARCHERS OR 1856 01:08:17,240 --> 01:08:18,520 RESEARCH COMMUNITY PARTICULARLY 1857 01:08:18,520 --> 01:08:20,920 TALKING ABOUT POPULATIONS 1858 01:08:20,920 --> 01:08:24,320 ALREADY FACING MANY MULTIPLE 1859 01:08:24,320 --> 01:08:25,960 AXIES OF MARGINALIZATION FOR 1860 01:08:25,960 --> 01:08:26,240 RISKS. 1861 01:08:26,240 --> 01:08:27,160 >>THANK YOU. 1862 01:08:27,160 --> 01:08:29,240 >>I WILL TAKE SLIGHTLY 1863 01:08:29,240 --> 01:08:31,040 CONTRARIAN VIEW AND IN TERMS OF 1864 01:08:31,040 --> 01:08:36,560 GETTING AWAY FROM THINKING ABOUT 1865 01:08:36,560 --> 01:08:39,120 DATA IN THAT WAY AND THINK IT IS 1866 01:08:39,120 --> 01:08:42,680 IMPORTANT TO STRATIFY IN TERMS 1867 01:08:42,680 --> 01:08:46,600 OF RISK AND IN WEIRABLES WORLD 1868 01:08:46,600 --> 01:08:49,720 SOMEBODY IS DAILY STEP COUNTS 1869 01:08:49,720 --> 01:08:53,800 ACROSS YEAR AND DEIDENTIFIED IS 1870 01:08:53,800 --> 01:08:55,120 A DIFFERENT PROPOSITION THAN 1871 01:08:55,120 --> 01:08:58,640 WHOLE GENOME AND THINK THAT 1872 01:08:58,640 --> 01:09:03,520 SOMETIMES PEOPLE GET STUCK 1873 01:09:03,520 --> 01:09:05,120 APPLYING HEALTH DATA MENTALITY 1874 01:09:05,120 --> 01:09:07,560 AND I HAVE ACTUALLY HAVE A FRONT 1875 01:09:07,560 --> 01:09:09,840 ROW SEAT TO THIS OVER THE YEARS 1876 01:09:09,840 --> 01:09:11,800 AND LAST DECADE WITH WEARABLES 1877 01:09:11,800 --> 01:09:13,600 AND WE FIRST STARTED OUT WITH 1878 01:09:13,600 --> 01:09:15,200 STEP COUNTING A BIT BRINGING IT 1879 01:09:15,200 --> 01:09:17,520 TO RESEARCH AND STEPS AND 1880 01:09:17,520 --> 01:09:18,960 CALORIES AND, YOU KNOW, NUMBER 1881 01:09:18,960 --> 01:09:22,640 OF MINUTES AND SLEEP. ONE 1882 01:09:22,640 --> 01:09:24,560 PIVOTAL MOMENT I WOULD SAY FOR 1883 01:09:24,560 --> 01:09:27,280 MY BUSINESS AND FOR WEARABLES 1884 01:09:27,280 --> 01:09:29,040 GENERALLY IS HOW TO CHARGE HR. 1885 01:09:29,040 --> 01:09:31,520 WE ALL OF A SUDDEN HAD ALL DAY 1886 01:09:31,520 --> 01:09:33,680 HEART RATE DATA FOR PEOPLE ON 1887 01:09:33,680 --> 01:09:39,360 THE RISK OF LITERALLY 24-HOUR 1888 01:09:39,360 --> 01:09:41,960 YEAR-LONG HEART RATE DATA SET 1889 01:09:41,960 --> 01:09:42,640 THAT OVERNIGHT BECAME SOMETHING 1890 01:09:42,640 --> 01:09:44,960 WE COULD HAVE; RIGHT? 1891 01:09:44,960 --> 01:09:46,720 CONVERSATIONS AROUND THAT, TO BE 1892 01:09:46,720 --> 01:09:48,920 HONEST, A COUPLE YEARS LATER, 1893 01:09:48,920 --> 01:09:50,400 BUSINESS DOUBLED FOR US IN TERMS 1894 01:09:50,400 --> 01:09:52,720 OF INTEREST OF CONSUMER 1895 01:09:52,720 --> 01:09:54,640 WEARABLES AND RESEARCH AND 1896 01:09:54,640 --> 01:09:55,960 CONVERSATIONS AROUND THAT WR 1897 01:09:55,960 --> 01:09:57,680 VERY INTERESTING AND WHAT DOES 1898 01:09:57,680 --> 01:09:59,880 THAT MEAN OR ALL DAY HEART RATE 1899 01:09:59,880 --> 01:10:01,840 DATA MEAN AND WHAT ARE 1900 01:10:01,840 --> 01:10:03,640 IMPLICATIONS OF THAT AND YOU 1901 01:10:03,640 --> 01:10:05,440 KNOW WE ARE NOW AT POINT GLUCOSE 1902 01:10:05,440 --> 01:10:07,120 WHAT DOES IT LOOK LIKE? 1903 01:10:07,120 --> 01:10:10,680 WE HAVE -- SO, SPECIFICITY, I 1904 01:10:10,680 --> 01:10:12,800 THINK, I GUESS RECOMMENDATIONS 1905 01:10:12,800 --> 01:10:15,560 FOR -- FOR FUTURE NIH IN THIS IS 1906 01:10:15,560 --> 01:10:18,440 YOU KNOW THERE ARE PROBABLY 1907 01:10:18,440 --> 01:10:20,080 THRESHOLDS FOR SPECIFICITY IN 1908 01:10:20,080 --> 01:10:23,520 WHAT RISK PROFILES AND SCENARIOS 1909 01:10:23,520 --> 01:10:25,640 FOR DIFFERENT DATA SETS ARE AND 1910 01:10:25,640 --> 01:10:28,040 SIMILAR THINGS WE HAVE TO ALSO 1911 01:10:28,040 --> 01:10:30,680 GET INTO WEEDS AND WORK HAS TO 1912 01:10:30,680 --> 01:10:33,680 BE DONE TO GIVE CONFIDENCE 1913 01:10:33,680 --> 01:10:35,000 THERE. 1914 01:10:35,000 --> 01:10:36,920 >>JUST ONE QUICK THOUGHT. SO, 1915 01:10:36,920 --> 01:10:39,800 JUST, YOU KNOW, THINKING ABOUT 1916 01:10:39,800 --> 01:10:43,640 RISK PROFILES AND EXAMPLE OF 1917 01:10:43,640 --> 01:10:46,000 DATA AND PUTTING COMMUNITY 1918 01:10:46,000 --> 01:10:49,400 ENGAGEMENT HAT ON I IMMEDIATELY 1919 01:10:49,400 --> 01:10:51,600 WENT TO THAT MIGHT NOT BE IN 1920 01:10:51,600 --> 01:10:53,760 THEORY AND IS LOWER ON RISK 1921 01:10:53,760 --> 01:10:55,760 SCALE AND BASED ON NOVEL 1922 01:10:55,760 --> 01:10:56,800 TECHNOLOGIES WE ARE TALKING 1923 01:10:56,800 --> 01:11:01,120 ABOUT AND HOW THINGS WILL BE 1924 01:11:01,120 --> 01:11:06,000 AGGREGATED TOGETHER FROM AN 1925 01:11:06,000 --> 01:11:07,120 INDIVIDUAL'S PERSPECTIVE THERE 1926 01:11:07,120 --> 01:11:08,800 IS A SENSE ANY OF ONE OF THOSE 1927 01:11:08,800 --> 01:11:11,520 CAN BE RISKY AND ONE PIECE YOU 1928 01:11:11,520 --> 01:11:16,480 STARTED WITH FITBIT DATA FOR 1929 01:11:16,480 --> 01:11:16,760 INSTANCE. 1930 01:11:16,760 --> 01:11:18,440 DOESN'T SEEM RELATIVELY HARMLESS 1931 01:11:18,440 --> 01:11:21,000 AND OTHER THINGS CAN NOW BE 1932 01:11:21,000 --> 01:11:22,960 CONNECTED THAT WILL GIVE A WHOLE 1933 01:11:22,960 --> 01:11:25,200 FULL PICTURE OF SOMEONE IN 1934 01:11:25,200 --> 01:11:27,000 THEORY WITH OR WITHOUT THEIR 1935 01:11:27,000 --> 01:11:29,240 FULL I SHOULDN'T SAY FULL 1936 01:11:29,240 --> 01:11:30,880 CONSENT BUT MAYBE THEY DON'T 1937 01:11:30,880 --> 01:11:34,240 REALIZE WHERE THEY ARE WITHIN 1938 01:11:34,240 --> 01:11:36,240 THAT PROCESS AND THINK IS IT A 1939 01:11:36,240 --> 01:11:40,680 QUOTE LOW RIFBLG IDEA OR 1940 01:11:40,680 --> 01:11:41,680 PROPOSITION VERSUS SOMETHING 1941 01:11:41,680 --> 01:11:45,400 HIGHER AND FOLKS IN ENGAGEMENT 1942 01:11:45,400 --> 01:11:48,600 AND RESEARCH SPACE HAVE 1943 01:11:48,600 --> 01:11:49,840 RESPONSIBILITY TO MAKE SURE 1944 01:11:49,840 --> 01:11:51,720 PEOPLE ARE FULLY INFORMED WHERE 1945 01:11:51,720 --> 01:11:54,920 THINGS CAN GO AND TO ME I LOOKED 1946 01:11:54,920 --> 01:11:59,520 AT DATA ALL HAVING POTENTIAL 1947 01:11:59,520 --> 01:12:02,200 RISK EVEN FITBIT SPACE. 1948 01:12:02,200 --> 01:12:04,760 THAT WAS MY ONLY THOUGHT ON 1949 01:12:04,760 --> 01:12:04,960 THAT. 1950 01:12:04,960 --> 01:12:06,000 >>THANK YOU. 1951 01:12:06,000 --> 01:12:08,600 SO, LET'S KIND OF LOOK AT, I 1952 01:12:08,600 --> 01:12:11,880 GUESS, A FLIPSIDE OF THE SAME 1953 01:12:11,880 --> 01:12:14,240 COIN AND THINK ABOUT FOR A 1954 01:12:14,240 --> 01:12:15,680 MOMENT WHAT WE HEARD RELATE 1955 01:12:15,680 --> 01:12:17,400 TODAY WHAT PEOPLE DON'T WANT 1956 01:12:17,400 --> 01:12:18,960 WHICH IS KIND OF THE OTHER SIDE 1957 01:12:18,960 --> 01:12:20,520 OF THIS; RIGHT? 1958 01:12:20,520 --> 01:12:22,800 WE HEARD CONCERNS ABOUT PRIVACY 1959 01:12:22,800 --> 01:12:25,600 AND SOME HAVE ELUDE TODAY THOSE 1960 01:12:25,600 --> 01:12:27,360 IN REMARKS ALREADY THIS MORNING 1961 01:12:27,360 --> 01:12:29,800 AND POTENTIAL FOR DATA TO BE 1962 01:12:29,800 --> 01:12:33,000 USED AGAINST NOT ONLY 1963 01:12:33,000 --> 01:12:34,800 INDIVIDUALS BUT COMMUNITIES AND, 1964 01:12:34,800 --> 01:12:36,520 YOU KNOW, IN PARTICULAR, THE 1965 01:12:36,520 --> 01:12:43,640 ISSUE OF USING PUBLIC DATA WITH 1966 01:12:43,640 --> 01:12:49,120 OR WITHOUT CONSENT AND WE HEARD 1967 01:12:49,120 --> 01:12:51,240 DATA PUBLIC WITH SOCIAL MEDIA 1968 01:12:51,240 --> 01:12:52,600 MANY PARTICIPANTS EXPRESSED THEY 1969 01:12:52,600 --> 01:12:56,920 STILL WANTED TO BE CONSENTED OR 1970 01:12:56,920 --> 01:12:59,200 AT LEAST NOTIFIED. 1971 01:12:59,200 --> 01:13:01,560 I'M CURIOUS TO HEAR ALL YOUR 1972 01:13:01,560 --> 01:13:03,960 REACTIONS TO SOME OF THE THINGS 1973 01:13:03,960 --> 01:13:06,200 WE HEARD THAT WE SHOULD BE 1974 01:13:06,200 --> 01:13:08,800 THINKING ABOUT HOW TO GUARD 1975 01:13:08,800 --> 01:13:14,200 AGAINST AND SOME CONCERNS 1976 01:13:14,200 --> 01:13:15,960 EXPRESS THE BY PARTICIPANTS. 1977 01:13:15,960 --> 01:13:17,880 AARON, WOULD YOU LIKE TO GO? 1978 01:13:17,880 --> 01:13:20,520 >>I DO AGREE PICKING UP FROM 1979 01:13:20,520 --> 01:13:22,800 LAST PART OF THE PANEL. DO I 1980 01:13:22,800 --> 01:13:25,720 AGREE WE DO KNOW THAT THERE IS A 1981 01:13:25,720 --> 01:13:28,840 SENTIMENT, YOU KNOW, THERE IS 1982 01:13:28,840 --> 01:13:31,520 RISK IN ALL DATA AND AGGREGATION 1983 01:13:31,520 --> 01:13:35,520 LEADS TO MORE QUESTIONS AND ONE 1984 01:13:35,520 --> 01:13:38,800 THING STRUCK OUT TO ME PEOPLE 1985 01:13:38,800 --> 01:13:42,320 DIDN'T WANT IS COMPANIES USING 1986 01:13:42,320 --> 01:13:44,440 DATA IN A WAY THAT WOULD BE 1987 01:13:44,440 --> 01:13:47,040 PROFITABLE FOR THEM OR TURN INTO 1988 01:13:47,040 --> 01:13:48,400 SOMETHING THAT THEY WEREN'T 1989 01:13:48,400 --> 01:13:52,880 PRIVY TO AS PART OF THE -- I 1990 01:13:52,880 --> 01:13:54,000 THINK OTHER THING THAT STOOD OUT 1991 01:13:54,000 --> 01:13:55,640 TO ME IN TERMS WHAT PEOPLE 1992 01:13:55,640 --> 01:13:58,240 DIDN'T WANT IS THEY DIDN'T WANT 1993 01:13:58,240 --> 01:14:01,000 TO REALLY ASSUME A LOT OF RISK 1994 01:14:01,000 --> 01:14:02,440 AND WEARABLE DATA BEING PART OF 1995 01:14:02,440 --> 01:14:07,400 AN INSURANCE POLICY ADJUSTMENT. 1996 01:14:07,400 --> 01:14:10,840 BUT, ONE OBSERVATION I HAD, 1997 01:14:10,840 --> 01:14:12,800 PEOPLE DO A RISK/REWARD 1998 01:14:12,800 --> 01:14:13,920 PROPOSITION AND THOUGHT OVER THE 1999 01:14:13,920 --> 01:14:15,840 WEEKEND WHERE I PERSONALLY WOULD 2000 01:14:15,840 --> 01:14:18,240 FEEL COMFORTABLE PUSHING MY 2001 01:14:18,240 --> 01:14:19,320 LIMITS GIVING UP PRIVACY AND 2002 01:14:19,320 --> 01:14:21,400 DON'T KNOW HOW MANY HAVE YOUNG 2003 01:14:21,400 --> 01:14:23,280 KIDS OR AELT YEAR OLDS ASKING 2004 01:14:23,280 --> 01:14:25,360 FOR TELEPHONE AND LOOKING AT 2005 01:14:25,360 --> 01:14:27,760 HORRIFIC RESEARCH AROUND 2006 01:14:27,760 --> 01:14:29,320 ESPECIALLY YOUNG WOMEN'S ACTS AS 2007 01:14:29,320 --> 01:14:31,240 TO SOCIAL NETWORKS AND BULLYING 2008 01:14:31,240 --> 01:14:32,920 AND BODY IMAGE AND ALL THOSE 2009 01:14:32,920 --> 01:14:35,600 THINGS AND LIKE I WILL HAVE TO 2010 01:14:35,600 --> 01:14:38,040 DEAL WITH THAT SOON. 2011 01:14:38,040 --> 01:14:39,720 THINKING THAT IF SOMEONE HAD A 2012 01:14:39,720 --> 01:14:40,960 STUDY SAYING WE NEED TO GIVE YOU 2013 01:14:40,960 --> 01:14:43,360 AN APP MONITORING ALL KIDS POSTS 2014 01:14:43,360 --> 01:14:46,080 AND FRIENDS POSTS AND NO WAY TO 2015 01:14:46,080 --> 01:14:48,920 DO THIS DEIDENTIFIED IN A WAY 2016 01:14:48,920 --> 01:14:51,080 THAT ISSINGFUL FOR YOU AND 2017 01:14:51,080 --> 01:14:52,800 SURFACE FOR YOU CONCERNS THERE 2018 01:14:52,800 --> 01:14:54,520 ARE BODY ISSUE LANGUAGE BEING 2019 01:14:54,520 --> 01:14:55,840 TALKED ABOUT AND BULLYING GOING 2020 01:14:55,840 --> 01:14:59,880 ON WE WILL SURFACE FRIEND'S 2021 01:14:59,880 --> 01:15:02,040 INTERACTIONS WITH YOU IS AN AREA 2022 01:15:02,040 --> 01:15:03,880 THAT PARENTS ARE STRUGGLING WITH 2023 01:15:03,880 --> 01:15:05,520 CONTROL OVER RIGHT NOW AND WOULD 2024 01:15:05,520 --> 01:15:07,240 PROBABLY LOOK AT THAT AND SAY, 2025 01:15:07,240 --> 01:15:09,320 YOU KNOW, RISK/REWARD 2026 01:15:09,320 --> 01:15:10,560 PROPOSITION THERE MAKES A LOT OF 2027 01:15:10,560 --> 01:15:14,200 SENSE TO ME. WHILE I DO 2028 01:15:14,200 --> 01:15:15,960 APPRECIATE WE HAVE ASKED PEOPLE 2029 01:15:15,960 --> 01:15:18,600 IN -- MY REACTION GENERALLY WE 2030 01:15:18,600 --> 01:15:21,280 ASKED PEOPLE WHAT THEY LIKE AND 2031 01:15:21,280 --> 01:15:24,400 DON'T LIKE AND THERE WILL BE 2032 01:15:24,400 --> 01:15:26,000 SCENARIOS WITH HENRY FORD QUOTE 2033 01:15:26,000 --> 01:15:27,400 PROBLEMS ASKING EVERYBODY WHAT 2034 01:15:27,400 --> 01:15:30,240 THEY WANTED BUILD A FASTER HO RS 2035 01:15:30,240 --> 01:15:32,240 AND THINK ALSO RESEARCH HAS 2036 01:15:32,240 --> 01:15:34,240 IMPORTANT PLACE TO BE 2037 01:15:34,240 --> 01:15:35,320 COUNTERBALANCING THE FORCES THAT 2038 01:15:35,320 --> 01:15:37,560 ARE BUILDING OUT TOOLS THAT ARE 2039 01:15:37,560 --> 01:15:40,080 COLLECTING THIS DATA, YOU KNOW, 2040 01:15:40,080 --> 01:15:44,240 WITHOUT ANY KIND OF REAL STOP 2041 01:15:44,240 --> 01:15:44,440 GAPS. 2042 01:15:44,440 --> 01:15:48,760 >>>>THANK YOU. 2043 01:15:48,760 --> 01:15:50,400 >>JUST A BRIEF COMMENT AND 2044 01:15:50,400 --> 01:15:52,600 THINK THIS QUESTION ABOUT WHAT 2045 01:15:52,600 --> 01:15:56,240 IS WHAT DATA OUR PUBLIC IS AN 2046 01:15:56,240 --> 01:15:56,840 INTERESTING ONE AND WHAT IS 2047 01:15:56,840 --> 01:16:00,480 MOTIVATION FOR SOMEBODY TO 2048 01:16:00,480 --> 01:16:10,880 ENGAGE IN THAT SPACE. 2049 01:16:11,640 --> 01:16:12,800 PARTICULAR HEALTH CONDITION OR 2050 01:16:12,800 --> 01:16:14,600 LIFE EXPERIENCE AND IDEA THEY 2051 01:16:14,600 --> 01:16:16,120 MIGHT NOT BE ENGAGING IN SPACE 2052 01:16:16,120 --> 01:16:19,600 OR RESEARCH TO BE USED IN THAT 2053 01:16:19,600 --> 01:16:21,160 WAY AND WHAT IS INTENTION 2054 01:16:21,160 --> 01:16:22,560 ENGAGING IN THAT SPACE IS 2055 01:16:22,560 --> 01:16:24,120 SOMETHING TO BE THOUGHTFUL ABOUT 2056 01:16:24,120 --> 01:16:26,200 THINKING WHAT IS PUBLIC AND 2057 01:16:26,200 --> 01:16:30,200 OTHER PART RELATED TO THAT IS IF 2058 01:16:30,200 --> 01:16:33,240 WE HAVE THINGS THAT DON'T 2059 01:16:33,240 --> 01:16:34,840 DEIDENTIFY HOW FAR DOES IT 2060 01:16:34,840 --> 01:16:36,360 DEIDENTIFY AND SOCIAL MEDIA 2061 01:16:36,360 --> 01:16:39,120 POSTS PUT INTO GOOGLE AND NOT 2062 01:16:39,120 --> 01:16:40,080 LINKS TODAY INDIVIDUAL OR CAN'T 2063 01:16:40,080 --> 01:16:42,040 BE LINKED BACK BY ANYONE EASILY 2064 01:16:42,040 --> 01:16:43,760 AND DOING SOCIAL MEDIA RESEARCH 2065 01:16:43,760 --> 01:16:46,320 NOW IT IS COMMON TO NOT ACTUALLY 2066 01:16:46,320 --> 01:16:48,160 PUT POSTS VERBATIM INTO RESEARCH 2067 01:16:48,160 --> 01:16:50,280 AND SUMMARIZE IT IN A WAY AND 2068 01:16:50,280 --> 01:16:52,640 AGAIN WHAT ARE BEST PRACTICES 2069 01:16:52,640 --> 01:16:53,520 FOR DOING THAT AND HOW ENSURE 2070 01:16:53,520 --> 01:16:55,840 THAT IS ACTUALLY HAPPENING IN 2071 01:16:55,840 --> 01:16:57,560 RESEARCH AND KNOW WHEN IT GOES 2072 01:16:57,560 --> 01:16:59,240 TO PEER REVIEW THAT NOT EVERY 2073 01:16:59,240 --> 01:17:00,800 POST IS BEING RIGHT LOOKED AT IT 2074 01:17:00,800 --> 01:17:04,960 TO MAKE SURE IT IS DEIDENTIFIED 2075 01:17:04,960 --> 01:17:10,040 IN THAT WAY. 2076 01:17:10,040 --> 01:17:13,000 >>SLOW DOWN HERE. NO. I WAS 2077 01:17:13,000 --> 01:17:14,920 -- JUST TWO THOUGHTS. 2078 01:17:14,920 --> 01:17:17,440 WHAT AARON SAID ABOUT 2079 01:17:17,440 --> 01:17:19,000 RISK/REWARD PROPOSITION, I THINK 2080 01:17:19,000 --> 01:17:20,840 IT IS SO IMPORTANT AND JUST 2081 01:17:20,840 --> 01:17:22,160 THINKING OF OTHER RESEARCH 2082 01:17:22,160 --> 01:17:23,760 PROJECTS I HAVE BEEN INVOLVED 2083 01:17:23,760 --> 01:17:25,360 IN. WHY DON'T -- AGAIN, 2084 01:17:25,360 --> 01:17:27,400 THINKING OF COMMUNITY 2085 01:17:27,400 --> 01:17:28,920 ENGAGEMENT, LET'S GO BEYOND FACT 2086 01:17:28,920 --> 01:17:30,560 THAT WE KNOW THAT IS A CONCERN 2087 01:17:30,560 --> 01:17:31,960 AND LET'S ENGAGE THE COMMUNITY 2088 01:17:31,960 --> 01:17:34,000 TO ACTUALLY ASK THEM WHAT IT 2089 01:17:34,000 --> 01:17:37,240 WOULD TAKE IN A POTENTIAL 2090 01:17:37,240 --> 01:17:38,520 SITUATION TO MOVE FORWARD. 2091 01:17:38,520 --> 01:17:43,720 WITH A PROJECT, FOR INSTANCE. 2092 01:17:43,720 --> 01:17:45,880 AND THE OTHER THING TOO ABOUT 2093 01:17:45,880 --> 01:17:47,480 THINKING ABOUT NOVEMBEREL 2094 01:17:47,480 --> 01:17:48,640 TECHNOLOGY YOU JUST MENTION BD 2095 01:17:48,640 --> 01:17:50,920 SOCIAL MEDIA THAT I THINK IS A 2096 01:17:50,920 --> 01:17:53,240 REALLY GREAT LENS TO LOOK AT 2097 01:17:53,240 --> 01:17:56,720 THINGS AND MOST OR LOTS OF NOVEL 2098 01:17:56,720 --> 01:17:58,560 TECHNOLOGIES DISCUSSING IN CASE 2099 01:17:58,560 --> 01:18:00,320 STUDIES, PEOPLE DIDN'T 2100 01:18:00,320 --> 01:18:02,200 PARTICIPATE IN THEM WITH AN IDEA 2101 01:18:02,200 --> 01:18:04,480 THAT WILL WAS GOING TO BE HEALTH 2102 01:18:04,480 --> 01:18:06,800 BENEFIT OR OUTCOME DOWN THE LINE 2103 01:18:06,800 --> 01:18:08,720 IF WE KNOW THAT ONUS 2104 01:18:08,720 --> 01:18:10,000 RESPONSIBILITY I WOULD SAY IS ON 2105 01:18:10,000 --> 01:18:12,680 US TO MAKE SURE WE ARE 2106 01:18:12,680 --> 01:18:14,120 EXPLAINING SPENDING THAT TIME TO 2107 01:18:14,120 --> 01:18:17,440 LET PEOPLE KNOW THERE IS A SHIFT 2108 01:18:17,440 --> 01:18:18,240 RIGHT NOW. 2109 01:18:18,240 --> 01:18:21,720 FACEBOOK CAN BE USED TO 2110 01:18:21,720 --> 01:18:24,640 POTENTIALLY HELP WITH YOUR 2111 01:18:24,640 --> 01:18:25,600 CARDIOVASCULAR DISEASE MANAGING 2112 01:18:25,600 --> 01:18:27,440 THAT AND THOUGHT IT WAS A 2113 01:18:27,440 --> 01:18:28,960 POWERFUL THING TO SAY. IT IS 2114 01:18:28,960 --> 01:18:31,480 NOT THE THOUGHT OF COMMUNITIES 2115 01:18:31,480 --> 01:18:34,120 FOR NOT RECOGNIZING THAT THIS IS 2116 01:18:34,120 --> 01:18:36,320 THE SPACE THAT WE ARE MOVING 2117 01:18:36,320 --> 01:18:38,480 INTO AND SYSTEMS WEREN'T 2118 01:18:38,480 --> 01:18:39,400 DESIGNED OR WEREN'T INFORMED 2119 01:18:39,400 --> 01:18:42,200 THAT IS WHERE THINGS WERE GOING 2120 01:18:42,200 --> 01:18:42,400 SO. 2121 01:18:42,400 --> 01:18:46,680 >>I HAVE A LOT OF DISJOINTEDED 2122 01:18:46,680 --> 01:18:49,560 THOUGHTS ABOUT COMMENTS YOU ALL 2123 01:18:49,560 --> 01:18:50,920 RAISED THAT ARE QUITE IMPORTANT 2124 01:18:50,920 --> 01:18:53,880 IN TERMS OF MY REACTION TO THE 2125 01:18:53,880 --> 01:18:55,480 IMPRESSION WHAT PEOPLE DON'T 2126 01:18:55,480 --> 01:18:56,480 WANT; RIGHT? 2127 01:18:56,480 --> 01:19:00,360 THERE IS A DRIVE FOR PRIVACY AND 2128 01:19:00,360 --> 01:19:02,400 PUBLIC AND THINK IT IS IMPORTANT 2129 01:19:02,400 --> 01:19:06,160 TO ACKNOWLEDGE THERE ARE PRIVACY 2130 01:19:06,160 --> 01:19:07,720 LAW SCHOLARS NOTING THAT TRYING 2131 01:19:07,720 --> 01:19:09,920 TO ADVOCATE FOR REASONABLE 2132 01:19:09,920 --> 01:19:11,920 EXPECTATION AND PRIVACY PUBLIC 2133 01:19:11,920 --> 01:19:15,800 AND SKINNER THOMPSON IS ONE OF 2134 01:19:15,800 --> 01:19:17,720 THEM AND CONVERSATIONS AND 2135 01:19:17,720 --> 01:19:19,040 ABILITY TO MAINTAIN PRIVACY 2136 01:19:19,040 --> 01:19:20,240 COMES FROM A PLACE OF PRIVILEGE 2137 01:19:20,240 --> 01:19:22,640 AND WE NEED TO THINK ABOUT THAT 2138 01:19:22,640 --> 01:19:26,120 AND HOW MARGINALIZED COMMUNITIES 2139 01:19:26,120 --> 01:19:27,880 DON'T OFTEN HAVE THAT CHOICE. 2140 01:19:27,880 --> 01:19:29,760 SO, YOU KNOW, WHEN I THINK ABOUT 2141 01:19:29,760 --> 01:19:32,000 PUBLIC DATA AND WHETHER WITH OR 2142 01:19:32,000 --> 01:19:33,360 WITHOUT CONSENT I'M COMING FROM 2143 01:19:33,360 --> 01:19:35,920 THIS HUMAN RIGHTS TO SCIENCE AND 2144 01:19:35,920 --> 01:19:37,280 HUMAN RIGHTS TO HEALTH AND 2145 01:19:37,280 --> 01:19:40,480 THINKING ABOUT WHAT ABOUT PEOPLE 2146 01:19:40,480 --> 01:19:42,040 WHO CAN'T SAY THEIR OPINIONS ON 2147 01:19:42,040 --> 01:19:45,200 THAT MATTER? 2148 01:19:45,200 --> 01:19:47,000 THAT IS ONE POINT. 2149 01:19:47,000 --> 01:19:48,560 RUPA, YOUR POINT ABOUT WHAT KIND 2150 01:19:48,560 --> 01:19:51,720 OF MOTIVATED THE ENGAGEMENT IN 2151 01:19:51,720 --> 01:19:55,240 THE FIRST PLACE LEADING TO DATA 2152 01:19:55,240 --> 01:19:57,960 IS SUPER IMPORTANT AND 2153 01:19:57,960 --> 01:19:59,200 EVERYTHING CONTEXTUALIZED AND 2154 01:19:59,200 --> 01:20:01,080 ENGAGING IN HEALTH RESEARCH, ONE 2155 01:20:01,080 --> 01:20:02,320 THING IMPORTANT TO NOTE IS 2156 01:20:02,320 --> 01:20:04,320 PEOPLE GENERALLY DO STILL HAVE A 2157 01:20:04,320 --> 01:20:06,520 VERY HIGH LEVEL OF TRUST IN 2158 01:20:06,520 --> 01:20:08,600 CLINICIANS AND HEALTH 2159 01:20:08,600 --> 01:20:10,240 RESEARCHERS THAT WE NEED TO 2160 01:20:10,240 --> 01:20:12,160 MAINTAIN THAT AND NOT JEOPARDIZE 2161 01:20:12,160 --> 01:20:15,280 THAT AND DOESN'T MEAN DON'T USE 2162 01:20:15,280 --> 01:20:17,280 NEW DEVICES OR WEARABLES AND 2163 01:20:17,280 --> 01:20:18,640 DON'T DO THAT KIND REEVE SEARCH 2164 01:20:18,640 --> 01:20:21,200 AND THINKING ABOUT WHAT IT MEANS 2165 01:20:21,200 --> 01:20:25,080 AND HOW WE CAN COLLECTIVELY DO 2166 01:20:25,080 --> 01:20:29,600 BETTER AND PUSH NON-HEALTH FOLKS 2167 01:20:29,600 --> 01:20:32,280 IN THAT DIRECTION AND FACIAL 2168 01:20:32,280 --> 01:20:33,440 ANALYTICS IS ONE EXAMPLE FOR 2169 01:20:33,440 --> 01:20:35,680 THAT AND USES FOR IT IN THE 2170 01:20:35,680 --> 01:20:37,480 HEALTH CARE SPACE AND OUTSIDE OF 2171 01:20:37,480 --> 01:20:40,120 THE HEALTH CARE SPACE AND DATA 2172 01:20:40,120 --> 01:20:42,200 AT END OF THE DAY IS DATA THAT 2173 01:20:42,200 --> 01:20:43,960 CAN HARM YOU AND THINKING ABOUT 2174 01:20:43,960 --> 01:20:47,560 WHAT LED TO DATA IS IMPORTANT 2175 01:20:47,560 --> 01:20:49,160 AND COMMENTS ABOUT REPORTING 2176 01:20:49,160 --> 01:20:51,080 STANDARDS REALLY ARE KEY TOO. 2177 01:20:51,080 --> 01:20:53,760 YOU KNOW, THAT IS SOMETHING I 2178 01:20:53,760 --> 01:20:55,120 HAVE HAD COME UP IN MY OWN WORK 2179 01:20:55,120 --> 01:20:57,120 WITH ETHICS OF SYNTHETIC DATA 2180 01:20:57,120 --> 01:20:59,600 AND THINKING ABOUT HOW TO 2181 01:20:59,600 --> 01:21:01,720 COMMUNICATE USE OF SYNTHETIC 2182 01:21:01,720 --> 01:21:03,120 DATA. THERE MIGHT BE 2183 01:21:03,120 --> 01:21:05,200 PERCEPTIONS BY NONDATA 2184 01:21:05,200 --> 01:21:06,200 SCIENTISTS THAT THIS IS FAKE 2185 01:21:06,200 --> 01:21:07,880 DATA AND WHAT ARE YOU TELLING ME 2186 01:21:07,880 --> 01:21:09,880 AND WHAT ARE YOU STUDYING? 2187 01:21:09,880 --> 01:21:13,120 SO, I THINK WE NEED TO BE 2188 01:21:13,120 --> 01:21:15,120 CAREFUL ABOUT THAT. 2189 01:21:15,120 --> 01:21:17,200 MY FINAL COMMENT NOW I WARNED 2190 01:21:17,200 --> 01:21:19,840 YOU THESE WERE DISJOINTED IS A 2191 01:21:19,840 --> 01:21:22,080 NOTION OF SOCIAL MEDIA. YOU 2192 01:21:22,080 --> 01:21:24,520 KNOW, OUR HEALTH IS A FUNCTION 2193 01:21:24,520 --> 01:21:27,400 OF US BEING NOT ONLY BIOLOGICAL 2194 01:21:27,400 --> 01:21:29,000 BEINGS BUT SOCIAL BEINGS. 2195 01:21:29,000 --> 01:21:30,600 WE SHOULDN'T BE SURPRISED THAT 2196 01:21:30,600 --> 01:21:34,240 HOW WE INTERACT WITH ONE ANOTHER 2197 01:21:34,240 --> 01:21:36,040 HAS IMPACT WITH HEALTH OR IS 2198 01:21:36,040 --> 01:21:38,640 HEALTH RELATED AND WE NEED TO 2199 01:21:38,640 --> 01:21:40,640 KEEP CONTEXTUAL INTEGRITY WHAT 2200 01:21:40,640 --> 01:21:41,840 DOES IT MEAN? 2201 01:21:41,840 --> 01:21:44,520 WE CAN HAVE MANY CONVERSATIONS, 2202 01:21:44,520 --> 01:21:46,520 AARON, ABOUT THE STEP COUNT AND 2203 01:21:46,520 --> 01:21:49,320 GEO LOCATION DATA AND ALL 2204 01:21:49,320 --> 01:21:49,520 THINGS. 2205 01:21:49,520 --> 01:21:51,800 I ACTUALLY THINK IT IS IMPORTANT 2206 01:21:51,800 --> 01:21:55,120 FOR US NOT TO KIND OF SEQUESTER 2207 01:21:55,120 --> 01:21:56,840 TECHNOLOGIES SAYING THIS IS 2208 01:21:56,840 --> 01:21:58,680 ACCEPTABLE VERSUS NOT ACCEPTABLE 2209 01:21:58,680 --> 01:22:00,400 AND IS MORE THERE ARE 2210 01:22:00,400 --> 01:22:02,000 RESPONSIBLE USES ALL AROUND. 2211 01:22:02,000 --> 01:22:04,880 HOW DO WE KIND OF DEFINE WHAT 2212 01:22:04,880 --> 01:22:06,240 PRACTICES MIGHT LOOK LIKE? IN 2213 01:22:06,240 --> 01:22:14,440 THAT CONTEXT OR WHATEVER CONTEXT 2214 01:22:14,440 --> 01:22:15,160 WE HAVE. 2215 01:22:15,160 --> 01:22:18,320 >>GREAT POINTS AND QUICKLY 2216 01:22:18,320 --> 01:22:22,800 BEFORE WE MOVE ON I WANT TO 2217 01:22:22,800 --> 01:22:25,480 REMIND ANYONE IN THE ROOM FEEL 2218 01:22:25,480 --> 01:22:26,960 FREE TO APPROACH MICROPHONE IF 2219 01:22:26,960 --> 01:22:29,080 YOU HAVE QUESTIONS ENCOURAGING 2220 01:22:29,080 --> 01:22:32,240 QUESTIONS AS WELL AS THOSE 2221 01:22:32,240 --> 01:22:37,120 TUNING IN PLEASE FEEL FREE TO 2222 01:22:37,120 --> 01:22:39,920 SUBMIT QUESTIONS AND COMMENTS. 2223 01:22:39,920 --> 01:22:41,600 ONE PERSON AT MICROPHONE AND 2224 01:22:41,600 --> 01:22:43,040 FOLLOWING UP QUICKLY ON ONE 2225 01:22:43,040 --> 01:22:45,160 THING AND WILL TURN IT OVER TO 2226 01:22:45,160 --> 01:22:45,520 YOU. 2227 01:22:45,520 --> 01:22:47,560 SO, JUST, I THINK THIS -- I 2228 01:22:47,560 --> 01:22:50,080 DON'T WANT TO LOSE TRACK OF THIS 2229 01:22:50,080 --> 01:22:53,160 POINT, RUPA, YOU FIRST BROUGHT 2230 01:22:53,160 --> 01:22:54,840 UP ABOUT AND THINK IS 2231 01:22:54,840 --> 01:22:56,320 PARTICULARLY RELEVANT FOR NOVEL 2232 01:22:56,320 --> 01:22:58,400 DATA TYPES THAT IS THE INTENTION 2233 01:22:58,400 --> 01:22:59,960 THAT PEOPLE ARE INTENTION WITH 2234 01:22:59,960 --> 01:23:01,480 WHICH PEOPLE ARE GENERATING 2235 01:23:01,480 --> 01:23:03,560 DATA, FOR EXAMPLE, ON SOCIAL 2236 01:23:03,560 --> 01:23:05,240 MEDIA. SORT OF LIKE I GO TO 2237 01:23:05,240 --> 01:23:06,920 SOCIAL MEDIA WITH THIS IN MIND, 2238 01:23:06,920 --> 01:23:09,640 YOU KNOW, NOT FOR THAT; RIGHT? 2239 01:23:09,640 --> 01:23:11,360 I WOULD BE CURIOUS TO JUST 2240 01:23:11,360 --> 01:23:15,640 PROMPT ALL PANELISTS TO THINK 2241 01:23:15,640 --> 01:23:18,240 ABOUT HOW DOES THAT 2242 01:23:18,240 --> 01:23:19,960 INTENTIONALITY AROUND NOVEMBEREL 2243 01:23:19,960 --> 01:23:22,480 DATA TYPES AND WHAT DOES IT MEAN 2244 01:23:22,480 --> 01:23:25,120 FOR HOW WE CREATE RESEARCH 2245 01:23:25,120 --> 01:23:26,680 POLICY AND I DON'T KNOW THERE IS 2246 01:23:26,680 --> 01:23:29,360 AN EASY ANSWER BUT JUST WANTED 2247 01:23:29,360 --> 01:23:30,960 TO PUT THAT OR PLANT THAT SEED. 2248 01:23:30,960 --> 01:23:33,000 WE MIGHT BE ABLE TO GET BACK TO 2249 01:23:33,000 --> 01:23:36,560 IT AT SOME POINT. DEVEN? 2250 01:23:36,560 --> 01:23:38,440 >>I COULD HAVE WAITED. IT IS 2251 01:23:38,440 --> 01:23:41,280 GOOD TO GET OUT OF THE CHAIR 2252 01:23:41,280 --> 01:23:43,160 PERIODICALLY. I'M DEVEN MCGRAW 2253 01:23:43,160 --> 01:23:44,960 AND LEAD FOR DATA STEWARDSHIP 2254 01:23:44,960 --> 01:23:47,480 AND DATA SHARING AT INVITAE. 2255 01:23:47,480 --> 01:23:49,840 ONE OF THE THINGS I SEE 2256 01:23:49,840 --> 01:23:51,040 FREQUENTLY THAT I THINK A NUMBER 2257 01:23:51,040 --> 01:23:52,960 OF YOU TOUCHED ON. GREAT PANEL, 2258 01:23:52,960 --> 01:23:54,840 BY THE WAY. THIS HAS BEEN 2259 01:23:54,840 --> 01:23:56,440 REALLY FASCINATING. ESPECIALLY 2260 01:23:56,440 --> 01:23:58,920 WHEN TALKING ABOUT DATA FROM 2261 01:23:58,920 --> 01:24:00,320 KIND OF NONTRADITIONAL SOURCES 2262 01:24:00,320 --> 01:24:03,960 YOU MIGHT BE ACCESSING FROM 2263 01:24:03,960 --> 01:24:05,440 RESEARCH PURPOSES FROM SOCIAL 2264 01:24:05,440 --> 01:24:07,880 MEDIA OR TRACKERS OR LOCATION 2265 01:24:07,880 --> 01:24:09,840 DATA AND WEARABLES AND I MEAN IT 2266 01:24:09,840 --> 01:24:11,400 IS REALLY -- YOU KNOW, ALL OF 2267 01:24:11,400 --> 01:24:13,760 THAT DATA CAN BE VERY STRUCKTIVE 2268 01:24:13,760 --> 01:24:15,600 FROM A RESEARCH PURPOSE. WHEN 2269 01:24:15,600 --> 01:24:18,240 THOSE TOOLS ARE UTILIZED EITHER 2270 01:24:18,240 --> 01:24:20,080 THEY -- YOU KNOW, THEY ARE 2271 01:24:20,080 --> 01:24:22,280 REALLY SUBJECT TO DATA SHARING 2272 01:24:22,280 --> 01:24:24,400 POLICIES OF THOSE PARTICULAR 2273 01:24:24,400 --> 01:24:24,840 TOOLS. 2274 01:24:24,840 --> 01:24:25,360 RIGHT? 2275 01:24:25,360 --> 01:24:28,600 I THINK WE KNOW THAT FOR MANY OF 2276 01:24:28,600 --> 01:24:31,160 THOSE COMPANIES SOMETIMES DATA 2277 01:24:31,160 --> 01:24:33,520 SHARING POLICIES ARE TRANSPARENT 2278 01:24:33,520 --> 01:24:35,320 AND DECENT AND SOMETIMES THEY 2279 01:24:35,320 --> 01:24:37,120 ARE NOT AND RESEARCH CONDUCTED 2280 01:24:37,120 --> 01:24:41,240 ON SOME TOOLS BY AND LARGE 2281 01:24:41,240 --> 01:24:44,560 MAJORITY ARE NOT TERRIBLY 2282 01:24:44,560 --> 01:24:46,000 TRANSPARENT OR HIDDEN IN TERMS 2283 01:24:46,000 --> 01:24:48,080 OF SERVICE AND WHERE -- HOW DO 2284 01:24:48,080 --> 01:24:49,720 -- HOW SHOULD WE APPROACH THAT 2285 01:24:49,720 --> 01:24:51,560 FROM A RESEARCH PERSPECTIVE? 2286 01:24:51,560 --> 01:24:53,680 SHOULD WE THINK ABOUT PEOPLE ARE 2287 01:24:53,680 --> 01:24:56,960 ALREADY USING THESE TOOLS AND 2288 01:24:56,960 --> 01:24:58,280 THEREFORE WE JUST -- THOSE RISKS 2289 01:24:58,280 --> 01:25:00,520 ARE OUTSIDE OF THE RESEARCH 2290 01:25:00,520 --> 01:25:02,400 RISKS THAT WE WILL, YOU KNOW, 2291 01:25:02,400 --> 01:25:04,480 ASK PEOPLE IF THEY ARE WILLING 2292 01:25:04,480 --> 01:25:07,120 TO TAKE ADVANTAGE OF HAVING DATA 2293 01:25:07,120 --> 01:25:11,240 THAT GETS COLLECTED THROUGH USE 2294 01:25:11,240 --> 01:25:13,880 OF TOOLS FOR RESEARCH PURPOSES 2295 01:25:13,880 --> 01:25:16,600 AND MESS GOING ON ON SIDE WITH 2296 01:25:16,600 --> 01:25:20,000 RESPECT TO HOW DATA IS SHARED IS 2297 01:25:20,000 --> 01:25:21,600 NOT OUR RESPONSIBILITY BUT WE 2298 01:25:21,600 --> 01:25:23,600 WILL TAKE IT AS A GIVEN OR DO WE 2299 01:25:23,600 --> 01:25:25,320 HAVE RESPONSIBILITY TO TRY TO 2300 01:25:25,320 --> 01:25:27,120 CREATE MORE TAILORED EXPERIENCES 2301 01:25:27,120 --> 01:25:31,120 THROUGH USE OF THE TOOLS BY 2302 01:25:31,120 --> 01:25:32,880 NEGOTIATING WITH THE AS PART OF 2303 01:25:32,880 --> 01:25:34,560 -- OPPOSED TO SAYING WE WILL 2304 01:25:34,560 --> 01:25:36,000 TAKE THIS OFF THE SHELF. WE 2305 01:25:36,000 --> 01:25:38,400 WILL TALK TO THIS FITNESS 2306 01:25:38,400 --> 01:25:41,560 TRACKER AND ASK IF WE CAN HAVE A 2307 01:25:41,560 --> 01:25:42,880 NOVEMBEREL EXPERIENCE FOR USERS 2308 01:25:42,880 --> 01:25:46,240 SO WE ARE NOT SUBJECTING THEM TO 2309 01:25:46,240 --> 01:25:47,160 ADDITIONAL RESEARCH RISK BY 2310 01:25:47,160 --> 01:25:49,640 ASKING THEM TO USE A TOOL AND 2311 01:25:49,640 --> 01:25:51,320 NOT NECESSARILY JUST DECIDING WE 2312 01:25:51,320 --> 01:25:54,040 WILL HANDLE RISKS BY DISCLOSING 2313 01:25:54,040 --> 01:25:56,280 THEM TO PEOPLE AND SAYING ARE 2314 01:25:56,280 --> 01:25:59,520 YOU WILLING TO ABSORB THIS RISK? 2315 01:25:59,520 --> 01:26:00,560 I'M CURIOUS ABOUT I THINK A 2316 01:26:00,560 --> 01:26:02,640 NUMBER OF YOU TOUCHED ON IT. 2317 01:26:02,640 --> 01:26:04,320 CURIOUS ABOUT YOUR THOUGHTS ON 2318 01:26:04,320 --> 01:26:04,920 THAT. THANK YOU. 2319 01:26:04,920 --> 01:26:07,840 >>THANKS FOR THE QUESTION. 2320 01:26:07,840 --> 01:26:09,320 GREAT QUESTION. 2321 01:26:09,320 --> 01:26:11,080 >>I HAVE A THOUGHT ON THAT. 2322 01:26:11,080 --> 01:26:14,440 THANKS SO MUCH FOR THE QUESTION. 2323 01:26:14,440 --> 01:26:17,960 I THINK THAT IN RESEARCH WE 2324 01:26:17,960 --> 01:26:19,960 SHOULD ABSOLUTELY HAVE A 2325 01:26:19,960 --> 01:26:23,320 RESPONSIBILITY TO HAVE 2326 01:26:23,320 --> 01:26:26,080 CONVERSATIONS WITH OTHER 2327 01:26:26,080 --> 01:26:27,520 NEFARIOUS ACTORS MAYBE THAT IS A 2328 01:26:27,520 --> 01:26:33,960 LITTLE STRONG. ABSOLUTELY. 2329 01:26:33,960 --> 01:26:36,040 I THINK REASON WHY IS BECAUSE 2330 01:26:36,040 --> 01:26:37,400 COMMUNITIES WHEN THEY ARE IRON 2331 01:26:37,400 --> 01:26:39,080 KALILY IT IS REALLY INTERESTING 2332 01:26:39,080 --> 01:26:43,120 IN CONVENINGS TO HEAR HOW MANY 2333 01:26:43,120 --> 01:26:46,920 PEOPLE ARE WILLING TO PROVIDE 2334 01:26:46,920 --> 01:26:48,960 DATA TO SOMETHING THAT SEEMS 2335 01:26:48,960 --> 01:26:51,760 SMALL AND FOR FITBIT OR SOME 2336 01:26:51,760 --> 01:26:52,800 OTHER WEARABLE OR SOMETHING CAME 2337 01:26:52,800 --> 01:26:55,040 UP IN ONE CONVERSATION ABOUT 2338 01:26:55,040 --> 01:26:56,520 APPLE CONSENT RIGHT ON THEIR 2339 01:26:56,520 --> 01:27:01,160 PHONE. WHEN YOU TIE IT TO 2340 01:27:01,160 --> 01:27:02,240 RESEARCH SUDDENLY FOR SOME 2341 01:27:02,240 --> 01:27:05,640 REASON IT CLICKS WITH PEOPLE I 2342 01:27:05,640 --> 01:27:09,200 THINK HOW LARGE AND HOW LARGE 2343 01:27:09,200 --> 01:27:12,520 AND IMPORTANT AND 2344 01:27:12,520 --> 01:27:14,040 INCONSEQUENTIAL THAT 2345 01:27:14,040 --> 01:27:17,360 PARTICIPATION IN A POTENTIAL 2346 01:27:17,360 --> 01:27:19,320 PROJECT IS. 2347 01:27:19,320 --> 01:27:22,680 I THINK FOR RESEARCH ENTERPRISE 2348 01:27:22,680 --> 01:27:23,520 LONG TERM AS YOU CONTINUE TO 2349 01:27:23,520 --> 01:27:25,400 WANT PEOPLE TO BE INVESTED AND 2350 01:27:25,400 --> 01:27:28,200 TRUST THE SYSTEM IF NOT HANDLED 2351 01:27:28,200 --> 01:27:30,200 OR MANAGED IN ANY WAY BASED ON 2352 01:27:30,200 --> 01:27:32,800 MY CONVERSATIONS IT ALL GETS 2353 01:27:32,800 --> 01:27:34,920 MUDDLED AND RESEARCHERS AND 2354 01:27:34,920 --> 01:27:37,000 PEOPLE TRYING TO DO REALLY GREAT 2355 01:27:37,000 --> 01:27:38,720 WORK IS SWEPT UP INTO THAT. IF 2356 01:27:38,720 --> 01:27:40,840 THERE IS NO SORT OF PUSHBACK, IF 2357 01:27:40,840 --> 01:27:43,760 YOU WILL, ON THAT SORT OF 2358 01:27:43,760 --> 01:27:45,360 BEHAVIOR I THINK THAT WILL 2359 01:27:45,360 --> 01:27:47,480 REMAIN, YOU KNOW, 10 YEARS OR 15 2360 01:27:47,480 --> 01:27:50,120 YEARS FROM NOW TRYING TO FIGURE 2361 01:27:50,120 --> 01:27:52,480 OUT WHY PEOPLE DON'T WANT TO 2362 01:27:52,480 --> 01:27:53,160 ENGAGE IN RESEARCH. 2363 01:27:53,160 --> 01:27:56,720 SO, TO ME, I THINK THAT LIKE 2364 01:27:56,720 --> 01:27:59,240 100% IS GETTING READY TO JUMP 2365 01:27:59,240 --> 01:28:01,400 OUT OF MY SEAT AND YES. LATTER 2366 01:28:01,400 --> 01:28:03,160 PART OF WHAT YOU SAID MAKES SO 2367 01:28:03,160 --> 01:28:05,160 MUCH SENSE IN WHAT SHOULD BE 2368 01:28:05,160 --> 01:28:05,400 DONE. 2369 01:28:05,400 --> 01:28:05,920 >>OTHER COMMENTS? 2370 01:28:05,920 --> 01:28:07,800 >>I LOVE THE QUESTION. I THINK 2371 01:28:07,800 --> 01:28:10,920 IT IS PART QUESTION AND ACTUALLY 2372 01:28:10,920 --> 01:28:12,080 CALL TO ACTION. 2373 01:28:12,080 --> 01:28:15,560 AND WHICH I DEFINITELY RESONATE 2374 01:28:15,560 --> 01:28:15,960 WITH. 2375 01:28:15,960 --> 01:28:17,720 FIRST PART, I THINK, YOU KNOW, 2376 01:28:17,720 --> 01:28:20,480 MORE AND MORE WE ARE HOLDING 2377 01:28:20,480 --> 01:28:22,880 COMPANIES AND CERTAIN COMPANIES 2378 01:28:22,880 --> 01:28:25,760 ACCOUNTABLE TO REALLY DISCLOSE 2379 01:28:25,760 --> 01:28:30,360 TRANSPARENT WILL I TO PRIVACY 2380 01:28:30,360 --> 01:28:33,080 POLICIES AND FITABASE RESEARCH 2381 01:28:33,080 --> 01:28:35,280 STUDY HOOER AND WEIGHT WE WERE 2382 01:28:35,280 --> 01:28:36,040 COLLECTING DATA FROM FACEBOOK 2383 01:28:36,040 --> 01:28:37,360 AND WORKING WITH THEM AND 2384 01:28:37,360 --> 01:28:39,480 LOOKING AT THEIR POLICIES AS 2385 01:28:39,480 --> 01:28:41,280 WELL AND WATCHING SORT OF WHAT 2386 01:28:41,280 --> 01:28:42,680 THEY PROGRESSED OVER THE YEARS 2387 01:28:42,680 --> 01:28:44,600 IS I THINK AN EXAMPLE WHAT WE 2388 01:28:44,600 --> 01:28:46,640 ARE TRYING TO AVOID AND DID THAT 2389 01:28:46,640 --> 01:28:48,720 AND WE NAVIGATED THE ROUGH 2390 01:28:48,720 --> 01:28:51,280 WATERS AS BEST AS WE COULD. I'M 2391 01:28:51,280 --> 01:28:56,360 PRETTY PLEASED WITH TRANSPARENCY 2392 01:28:56,360 --> 01:28:58,800 WITH WEARABLES AND PRIVACY HAS 2393 01:28:58,800 --> 01:29:00,440 GOTTEN CLEAR AND INTERNAL 2394 01:29:00,440 --> 01:29:01,480 PRACTICES HAVE OPENED UP OVER 2395 01:29:01,480 --> 01:29:02,960 THE YEARS AND THINK THAT THE 2396 01:29:02,960 --> 01:29:04,480 SECOND PART WHAT YOU ASKED IS 2397 01:29:04,480 --> 01:29:06,200 SORT OF ROOET SEARCH 2398 01:29:06,200 --> 01:29:08,080 CONVERSATION AND RESEARCH 2399 01:29:08,080 --> 01:29:09,480 ENGAGEMENT WITH PEOPLE WEARING A 2400 01:29:09,480 --> 01:29:11,480 WEARABLE OR DEVICE AND 100% 2401 01:29:11,480 --> 01:29:15,680 THINK THIS IS THE AREA WHICH 2402 01:29:15,680 --> 01:29:17,640 MOST AMOUNT OF BLUE SKY EXISTS 2403 01:29:17,640 --> 01:29:19,960 FOR ADDITIONAL WORK AND IN FACT 2404 01:29:19,960 --> 01:29:23,040 AS A COMPANY WE INVESTED IN IT 2405 01:29:23,040 --> 01:29:24,440 SIGNIFICANTLY AND COMPANY 2406 01:29:24,440 --> 01:29:26,280 FITABASE ENGAGE AND LUCKY TO 2407 01:29:26,280 --> 01:29:29,400 WORK WITH REALLY GREAT 2408 01:29:29,400 --> 01:29:30,320 RESEARCHERS AND WITH PERMISSION 2409 01:29:30,320 --> 01:29:33,880 I TEST STUDIES AND ONE NOW IS 2410 01:29:33,880 --> 01:29:35,120 ASKING AFTER EVERY EXERCISE 2411 01:29:35,120 --> 01:29:37,400 EVENT TO REFLECT GIVING 1 2412 01:29:37,400 --> 01:29:40,600 THROUGH 5 RESPONSE AS TO REF 2413 01:29:40,600 --> 01:29:41,880 REFLECTING ON EXERCISE YOU DID 2414 01:29:41,880 --> 01:29:43,800 HOW DO YOU FEEL AND CAN YOU USE 2415 01:29:43,800 --> 01:29:46,200 REFLECTION AS A WAY TO THINK 2416 01:29:46,200 --> 01:29:50,720 ABOUT WHEN YOU MIGHT EXERCISE 2417 01:29:50,720 --> 01:29:53,120 AGAIN. THERE ARE REALLY 2418 01:29:53,120 --> 01:29:55,160 IMPORTANT METHOD-BASED RESEARCH 2419 01:29:55,160 --> 01:29:57,760 MISSING FROM THE CONVERSATION 2420 01:29:57,760 --> 01:30:00,160 WITH PEOPLE CREATING DATA 2421 01:30:00,160 --> 01:30:01,480 INTENTIONALLY OR AS AN EXHAUST 2422 01:30:01,480 --> 01:30:03,200 WHEN WEARING APPLE WATCH. I 2423 01:30:03,200 --> 01:30:05,080 WANT TO GET NOTIFICATION AND AS 2424 01:30:05,080 --> 01:30:06,840 AN EXHAUST OF THAT I AM GETTING 2425 01:30:06,840 --> 01:30:09,640 ALL THIS. CONVERSATION THERE IS 2426 01:30:09,640 --> 01:30:11,000 I THINK REALLY IMPORTANT FOR US 2427 01:30:11,000 --> 01:30:14,840 TO THINK ABOUT HOW WE CAN JOIN 2428 01:30:14,840 --> 01:30:17,080 UP WITH THAT. VERY MUCH I THINK 2429 01:30:17,080 --> 01:30:18,760 WHERE PEOPLE AND RESPONSES DON'T 2430 01:30:18,760 --> 01:30:20,600 NECESSARILY GIVE US THAT. 2431 01:30:20,600 --> 01:30:21,800 THEY DON'T KNOW WHAT TO ASK FOR 2432 01:30:21,800 --> 01:30:24,600 AND IS THE CALL TO ACTION FROM 2433 01:30:24,600 --> 01:30:26,640 ALL THIS. 2434 01:30:26,640 --> 01:30:29,840 >>YEAH. DEVEN, FANTASTIC 2435 01:30:29,840 --> 01:30:31,480 QUESTION. I'M A BIT MORE 2436 01:30:31,480 --> 01:30:33,040 CONCERNED ABOUT DATA PRACTICES 2437 01:30:33,040 --> 01:30:34,600 THAN DATA POLICIES AT END OF THE 2438 01:30:34,600 --> 01:30:37,560 DAY WHICH IS A REASON I AM AT 2439 01:30:37,560 --> 01:30:39,920 PENN STATE. I WANT TO GET 2440 01:30:39,920 --> 01:30:41,760 ENGINEERS WHEN BUILDING 2441 01:30:41,760 --> 01:30:43,080 TECHNOLOGIES SO THEY THINK COMB 2442 01:30:43,080 --> 01:30:45,040 THESE ISSUES NOW NOT LATER WHEN 2443 01:30:45,040 --> 01:30:46,320 A LEGAL DEPARTMENT TELLS THEM 2444 01:30:46,320 --> 01:30:48,760 THEY HAVE TO THINK ABOUT IT OR 2445 01:30:48,760 --> 01:30:51,360 IRB TELLS THEM THEY HAVE TO 2446 01:30:51,360 --> 01:30:54,560 THINK ABOUT IT. PRA YOUR 2447 01:30:54,560 --> 01:30:58,200 SUGGESTION THAT HEALTH 2448 01:30:58,200 --> 01:31:02,920 ORGANIZATIONS AND THINKING ABOUT 2449 01:31:02,920 --> 01:31:05,120 IN WEARABLE SPACE AND ALSO IS 2450 01:31:05,120 --> 01:31:06,680 IMPORTANT IN THE GENOMIC SPACE, 2451 01:31:06,680 --> 01:31:10,200 YOU KNOW, IN THINKING ABOUT HOW 2452 01:31:10,200 --> 01:31:11,960 WE CAN USHER IN SOCIAL NORMS 2453 01:31:11,960 --> 01:31:14,680 THAT ARE MAYBE NOT LEGALLY 2454 01:31:14,680 --> 01:31:16,920 MANDATED AND GENETIC 2455 01:31:16,920 --> 01:31:18,160 DISCRIMINATION AND BIG HEALTH 2456 01:31:18,160 --> 01:31:20,480 SYSTEMS WITH VENDORS AND THEY 2457 01:31:20,480 --> 01:31:24,000 WOULD NEGOTIATE CLAUSES SAYING 2458 01:31:24,000 --> 01:31:26,280 THAT YOU KNOW OTHERS WON'T USE 2459 01:31:26,280 --> 01:31:28,600 THAT INFORMATION IN 2460 01:31:28,600 --> 01:31:29,880 DISCRIMINATORY WAYS AND THAT 2461 01:31:29,880 --> 01:31:32,640 COULD USHER IN CHANGE IN 2462 01:31:32,640 --> 01:31:33,800 EXPECTATIONS TO DO BETTER. 2463 01:31:33,800 --> 01:31:35,640 I THINK THAT ONE OF THE THINGS 2464 01:31:35,640 --> 01:31:37,360 THAT FRUSTRATED ME AND CONTINUES 2465 01:31:37,360 --> 01:31:40,240 TO FRUSTRATE ME IS A DISCONNECT 2466 01:31:40,240 --> 01:31:42,240 OF WHAT WE ARE TRYING TO MANDATE 2467 01:31:42,240 --> 01:31:43,920 IN THE RESEARCH SPACE AND WHAT 2468 01:31:43,920 --> 01:31:46,640 WE TOLERATE IN THE REAL WORLD; 2469 01:31:46,640 --> 01:31:46,920 RIGHT? 2470 01:31:46,920 --> 01:31:49,480 I'M A LITTLE CONCERNED ABOUT US 2471 01:31:49,480 --> 01:31:51,520 IMPOSING TOO MANY STEPS AND TOO 2472 01:31:51,520 --> 01:31:55,000 MANY OBLIGATIONS ON RESEARCHERS 2473 01:31:55,000 --> 01:31:57,000 AND WANTING TO UNDERSTAND A 2474 01:31:57,000 --> 01:31:58,840 SITUATION OR HOW THINGS WORK OR 2475 01:31:58,840 --> 01:32:02,840 A PARTICULAR TOPIC THAT I THINK 2476 01:32:02,840 --> 01:32:05,640 THAT DETOURANT EFFECT WILL HURT 2477 01:32:05,640 --> 01:32:08,040 ALL OF US IN THE LONG RUN AND 2478 01:32:08,040 --> 01:32:09,560 WOULD RATHER US THINK ABOUT HOW 2479 01:32:09,560 --> 01:32:11,720 WE CAN BE MORE MINDFUL IN 2480 01:32:11,720 --> 01:32:13,320 ADVANCING BETTER PRACTICES IN 2481 01:32:13,320 --> 01:32:16,920 OTHER SPACES; RIGHT? 2482 01:32:16,920 --> 01:32:19,680 ON CONSENT ISSUE AND YES TO 2483 01:32:19,680 --> 01:32:21,840 TECHNOLOGIES AND IN CONSUMER 2484 01:32:21,840 --> 01:32:23,360 SPACE TO WANT A FRICTIONLESS 2485 01:32:23,360 --> 01:32:26,160 EXPERIENCE AND GET ME TO THE 2486 01:32:26,160 --> 01:32:28,560 THING AND DEVICE AND TO WHATEVER 2487 01:32:28,560 --> 01:32:30,360 ACTION THIS IS SUPPOSED TO GIVE 2488 01:32:30,360 --> 01:32:31,760 ME AND YES WHATEVER YOUR TERMS 2489 01:32:31,760 --> 01:32:34,440 ARE YES, YES, YES, YES, YES 2490 01:32:34,440 --> 01:32:36,200 DON'T READ IT AND IN HEALTH 2491 01:32:36,200 --> 01:32:37,520 RESEARCH SPACE IS LET'S GO 2492 01:32:37,520 --> 01:32:40,240 THROUGH THE CONSENT FORM AND ASK 2493 01:32:40,240 --> 01:32:42,080 YOU TEACH-BACK QUESTIONS TO MAKE 2494 01:32:42,080 --> 01:32:42,880 SURE YOU UNDERSTAND AND THINK 2495 01:32:42,880 --> 01:32:44,960 ABOUT THIS AND WE ARE IMPOSING 2496 01:32:44,960 --> 01:32:46,280 FRICTION OR IT INGRESS TO GET 2497 01:32:46,280 --> 01:32:47,960 PEOPLE TO PAUSE AND THINK ABOUT 2498 01:32:47,960 --> 01:32:49,880 IT. FOR ME, I'M TRYING TO THINK 2499 01:32:49,880 --> 01:32:53,440 ABOUT HOW WE ALIGN AND, AGAIN, 2500 01:32:53,440 --> 01:32:55,920 BREAK DOWN A BARRIER OF CLINICAL 2501 01:32:55,920 --> 01:32:57,640 VERSUS NONCLINICAL SETTING AND 2502 01:32:57,640 --> 01:32:59,480 GETTING REASONABLE PRACTICES 2503 01:32:59,480 --> 01:33:03,760 ACROSS BOARD IN DATIFIED CULTURE 2504 01:33:03,760 --> 01:33:04,720 WE ARE IN. 2505 01:33:04,720 --> 01:33:07,240 >>MAYBE DISJOINTED THOUGHTS TO 2506 01:33:07,240 --> 01:33:10,000 SPEAK TO YOUR POINT I LOVE THE 2507 01:33:10,000 --> 01:33:12,880 POINT ABOUT HOW WE THINK ABOUT 2508 01:33:12,880 --> 01:33:16,080 THIS ABOUT POINT OF DESIGN AND 2509 01:33:16,080 --> 01:33:18,320 THINKING ABOUT IT IN WORK I'M 2510 01:33:18,320 --> 01:33:21,080 LOOKING AT WITH WEB CONTENT 2511 01:33:21,080 --> 01:33:23,160 ACCESSIBILITY GUIDELINES AND 2512 01:33:23,160 --> 01:33:25,120 BASELINE THERE IS MORE TO 2513 01:33:25,120 --> 01:33:26,840 ACCESSIBILITY WITH WHAT IS IN 2514 01:33:26,840 --> 01:33:28,320 GUIDELINES AND HAVING THEM 2515 01:33:28,320 --> 01:33:31,200 IMPLEMENTED IN CONTEXT OF HEALTH 2516 01:33:31,200 --> 01:33:32,840 TECHNOLOGIES AND TECHNOLOGIES 2517 01:33:32,840 --> 01:33:34,680 COLLECTING DATA FROM IS AT 2518 01:33:34,680 --> 01:33:36,760 STARTING POINT AND RELIES ON 2519 01:33:36,760 --> 01:33:38,200 PEOPLE THAT ARE OFTEN DISABLED 2520 01:33:38,200 --> 01:33:40,800 THEMSELVES ENGAGING IN LEGAL 2521 01:33:40,800 --> 01:33:41,960 ACTION FOR TECHNOLOGY TO CHANGE 2522 01:33:41,960 --> 01:33:44,400 THAT IS A BURDEN FOR COMMUNITIES 2523 01:33:44,400 --> 01:33:46,360 TO ENGAGE WITH TECHNOLOGY 2524 01:33:46,360 --> 01:33:48,360 IMPOSING A LEVEL OF BURDEN AND 2525 01:33:48,360 --> 01:33:49,280 TALKING ABOUT THIS GOING TO 2526 01:33:49,280 --> 01:33:51,120 POINT YOU ARE MAKING THIS IS A 2527 01:33:51,120 --> 01:33:52,720 RESPONSIBILITY OF THE DESIGN 2528 01:33:52,720 --> 01:33:54,920 COMMUNITY FROM EARLY ON NOT TO 2529 01:33:54,920 --> 01:33:56,960 HAVE TO WAIT FOR LEGAL ACTION TO 2530 01:33:56,960 --> 01:33:59,520 BE TAKEN FOR TYPES OF INCLUSIVE 2531 01:33:59,520 --> 01:34:00,960 TECHNOLOGIES TO BE BUILT. 2532 01:34:00,960 --> 01:34:02,960 OTHER POINT IS JUST RELATED TO, 2533 01:34:02,960 --> 01:34:04,920 YES. I SEE YOU BROUGHT UP THE 2534 01:34:04,920 --> 01:34:06,800 POINT EARLIER ON IN TERMS OF 2535 01:34:06,800 --> 01:34:09,160 TRUST OR HEALTH RESEARCHERS AND 2536 01:34:09,160 --> 01:34:10,720 IN CLINICIANS AND I THINK THAT 2537 01:34:10,720 --> 01:34:12,520 ALSO JUST TO ACKNOWLEDGE THE 2538 01:34:12,520 --> 01:34:14,440 POINT THAT, THAT TRUST IS NOT 2539 01:34:14,440 --> 01:34:16,520 EVENLY DISTRIBUTED ACROSS 2540 01:34:16,520 --> 01:34:18,200 COMMUNITIES THERE IS LOTS OF 2541 01:34:18,200 --> 01:34:20,560 VARIABILITY IN LEAVELE OF TRUST 2542 01:34:20,560 --> 01:34:22,640 THAT EXIST AND TO THE POINT THAT 2543 01:34:22,640 --> 01:34:26,160 IF WE TRY TO BE INCLUSIVE AND 2544 01:34:26,160 --> 01:34:28,280 TRYING TO INCREASE RESEARCH 2545 01:34:28,280 --> 01:34:29,800 REPRESENTATION AND IN 2546 01:34:29,800 --> 01:34:32,240 INITIATIVES PUTTING FORWARD THAT 2547 01:34:32,240 --> 01:34:34,680 WILL BE ESSENTIAL TO THINK ABOUT 2548 01:34:34,680 --> 01:34:36,600 THIS IN THIS CONTEXT AS WELL. 2549 01:34:36,600 --> 01:34:42,080 >>THANKS SO MUCH. NEXT 2550 01:34:42,080 --> 01:34:46,200 QUESTION? 2551 01:34:46,200 --> 01:34:48,920 >>SOMETHING THAT I THINK WE 2552 01:34:48,920 --> 01:34:51,800 HEARD IN ALL OF THE COMMUNITY 2553 01:34:51,800 --> 01:34:54,120 CONVERSATIONS WE HEARD ACROSS 2554 01:34:54,120 --> 01:34:55,600 THE COUNTRY AND CURIOUS HOW 2555 01:34:55,600 --> 01:34:58,960 PANEL WOULD RESPOND TO THIS 2556 01:34:58,960 --> 01:35:01,440 WHICH IS AROUND NOTION OF USING 2557 01:35:01,440 --> 01:35:02,840 INFORMATION POSTED ON SOCIAL 2558 01:35:02,840 --> 01:35:06,040 MEDIA TO INFORM OR HELP TO 2559 01:35:06,040 --> 01:35:07,560 ADVANCE HEALTH RESEARCH. YOU 2560 01:35:07,560 --> 01:35:10,080 KNOW, WE HEARD IN ALL OF THESE 2561 01:35:10,080 --> 01:35:11,800 COMMUNITY CONVENINGS QUESTIONS 2562 01:35:11,800 --> 01:35:14,360 OR CONCERNS THAT ARE AROUND THE 2563 01:35:14,360 --> 01:35:17,160 VALIDITY OF INFORMATION THAT IS 2564 01:35:17,160 --> 01:35:20,080 USED IN RESEARCH AND HOW 2565 01:35:20,080 --> 01:35:21,400 RESEARCHERS WOULD ASSESS 2566 01:35:21,400 --> 01:35:22,800 VALIDITY OF THE INFORMATION THAT 2567 01:35:22,800 --> 01:35:25,280 WAS POSTED. AS SOMEBODY WHO HAS 2568 01:35:25,280 --> 01:35:30,160 THREE TEENAGERS, I'M AWARE THAT 2569 01:35:30,160 --> 01:35:31,160 IS A THING. 2570 01:35:31,160 --> 01:35:33,360 I'M CURIOUS AS TO HOW EACH OF 2571 01:35:33,360 --> 01:35:35,040 YOU THINK ABOUT THAT AND RESPOND 2572 01:35:35,040 --> 01:35:37,840 TO COMMUNITY MEMBERS WHEN 2573 01:35:37,840 --> 01:35:39,480 RAISING QUESTIONS AND/OR 2574 01:35:39,480 --> 01:35:40,560 CONCERNS ABOUT PULLING 2575 01:35:40,560 --> 01:35:42,200 INFORMATION THAT PEOPLE POST ON 2576 01:35:42,200 --> 01:35:45,600 SOCIAL CHANNELS AND BRINGING 2577 01:35:45,600 --> 01:35:50,200 THAT INTO RESEARCH. 2578 01:35:50,200 --> 01:35:54,160 >>THANK YOU FOR THE QUESTION. 2579 01:35:54,160 --> 01:35:55,800 >>THE QUESTION THAT IS 2580 01:35:55,800 --> 01:35:58,080 PRIMARILY BASED ON VALIDATING IT 2581 01:35:58,080 --> 01:35:59,520 IS TRUTHFUL OR ACCURATE. 2582 01:35:59,520 --> 01:36:00,160 >>RIGHT. 2583 01:36:00,160 --> 01:36:02,560 >>YEAH. I MEAN, PERHAPS THIS 2584 01:36:02,560 --> 01:36:05,440 IS CYNICALLE OF ME AND WORK I 2585 01:36:05,440 --> 01:36:07,680 HAVE DONE SHOWS THAT INDIVIDUALS 2586 01:36:07,680 --> 01:36:09,640 ARE NOT NECESSARILY FORTHCOMING 2587 01:36:09,640 --> 01:36:10,520 WITH DOCTORS EITHER AND 2588 01:36:10,520 --> 01:36:12,080 INFORMATION THAT IS SHARED WITH 2589 01:36:12,080 --> 01:36:14,200 DOCTORS OR CLINICIANS DOESN'T 2590 01:36:14,200 --> 01:36:15,920 END UP IN THE HEALTH RECORD IN 2591 01:36:15,920 --> 01:36:18,640 THE SAME FORMAT OR SAME LEVEL OF 2592 01:36:18,640 --> 01:36:20,320 DETAIL AND I QUESTION THE 2593 01:36:20,320 --> 01:36:23,360 VALIDITY OF THAT INFORMATION AS 2594 01:36:23,360 --> 01:36:24,160 WELL SOMETIMES. 2595 01:36:24,160 --> 01:36:26,200 SO, YEAH. I THINK THAT THE 2596 01:36:26,200 --> 01:36:27,720 REALLY DIFFICULT QUESTION DATA 2597 01:36:27,720 --> 01:36:30,360 QUALITY REGARDLESS WHERE THEY 2598 01:36:30,360 --> 01:36:33,880 ARE IS IMPORTANT. I DON'T HAVE 2599 01:36:33,880 --> 01:36:35,600 THE ANSWER TO THAT ONE. 2600 01:36:35,600 --> 01:36:37,640 >>ONE EXAMPLE THAT COMES TO 2601 01:36:37,640 --> 01:36:40,840 MIND IS NOT MY AREA EITHER. 2602 01:36:40,840 --> 01:36:44,320 SO, BUT VOLUME I THINK OF DATA 2603 01:36:44,320 --> 01:36:46,520 AND SORT OF BREADTH OF THE 2604 01:36:46,520 --> 01:36:49,080 QUESTION CHANGES EQUATION TO ONE 2605 01:36:49,080 --> 01:36:51,920 EXAMPLE JOHN BROWN FIELD DID THE 2606 01:36:51,920 --> 01:36:56,120 TWITTER FLU DETECTOR AND WAS 2607 01:36:56,120 --> 01:36:59,600 ABLE TO DETECT FLU SPREAD ACROSS 2608 01:36:59,600 --> 01:37:03,800 US AND CDC MODELS TOO AND PUBLIC 2609 01:37:03,800 --> 01:37:05,840 POSTINGS OF LARGE AMOUNT OF 2610 01:37:05,840 --> 01:37:08,360 [INDISCERNIBLE]. SO, YES. 2611 01:37:08,360 --> 01:37:10,240 LIKE I'M SURE THAT PEOPLE ARE 2612 01:37:10,240 --> 01:37:11,840 RECORDING THINGS THAT MIGHT NOT 2613 01:37:11,840 --> 01:37:14,400 HAVE BEEN TRUE AND SYMPTOMS THAT 2614 01:37:14,400 --> 01:37:17,080 ARE UNRELATED AND THERE IS VALUE 2615 01:37:17,080 --> 01:37:21,120 THERE AND TO YOUR POINT THIS 2616 01:37:21,120 --> 01:37:22,800 INFORMATION ALGORITHMIC 2617 01:37:22,800 --> 01:37:28,400 ELEVATION OF SORT OF THE MOST 2618 01:37:28,400 --> 01:37:29,040 CLICK-WORTHY TYPE OF INFORMATION 2619 01:37:29,040 --> 01:37:31,160 SEEMS TO BE DOMINATING AND 2620 01:37:31,160 --> 01:37:32,600 PROBLEM IS GETTING WORSE NOT 2621 01:37:32,600 --> 01:37:33,960 BETTER FOR US UNFORTUNATELY. 2622 01:37:33,960 --> 01:37:35,480 >>ON THAT POINT I WOULD SAY 2623 01:37:35,480 --> 01:37:37,600 THERE IS SOMETHING TO BE SAID 2624 01:37:37,600 --> 01:37:39,680 ABOUT IS THAT ENVIRONMENT 2625 01:37:39,680 --> 01:37:42,280 WHETHER A SOCIAL MEDIA PLATFORM 2626 01:37:42,280 --> 01:37:44,880 OR IN COMMUNITY PHYSICALLE 2627 01:37:44,880 --> 01:37:46,800 EXPERIENCE IS THAT WHERE THAT 2628 01:37:46,800 --> 01:37:49,920 PARTICULAR INDIVIDUAL FIELD IS 2629 01:37:49,920 --> 01:37:51,520 COMFORTABLE BEING CANDID IS A 2630 01:37:51,520 --> 01:37:54,120 QUESTION AND DEVELOPMENT OF CHAT 2631 01:37:54,120 --> 01:37:56,600 BOTS IN HEALTH CARE SYSTEM RIGHT 2632 01:37:56,600 --> 01:37:58,880 IS THAT GOING INCREASE ACCESS TO 2633 01:37:58,880 --> 01:38:01,960 CARE OWE OR BE VIEWED AS CALLUS 2634 01:38:01,960 --> 01:38:05,720 YOU HAVE A COMPUTER EFFECTIVELY 2635 01:38:05,720 --> 01:38:06,960 HANDLING CARE AND HAVE SEEN 2636 01:38:06,960 --> 01:38:08,400 STUDIES HAVE BEEN PRETTY CLEAR 2637 01:38:08,400 --> 01:38:10,920 THAT ACCESS FOR MENTAL HEALTH 2638 01:38:10,920 --> 01:38:12,480 SERVICES EVEN IF A CHAT BEAU THE 2639 01:38:12,480 --> 01:38:15,520 CAN BE QUITE VALUABLE. WE WILL 2640 01:38:15,520 --> 01:38:17,240 HAVE INDIVIDUAL VARIABILITY AND 2641 01:38:17,240 --> 01:38:19,280 ROLE OF THE ANTHROPOLOGIST CAN'T 2642 01:38:19,280 --> 01:38:21,720 BE -- CAN'T BE OVERLOOKED IN 2643 01:38:21,720 --> 01:38:25,000 SETTINGS EVEN THOUGH WE ARE NOT 2644 01:38:25,000 --> 01:38:27,320 ALWAYS INCLUDED IN THE TEAMS AND 2645 01:38:27,320 --> 01:38:29,760 THINK THAT CONTEXT IS REALLY 2646 01:38:29,760 --> 01:38:30,200 KEY. 2647 01:38:30,200 --> 01:38:31,520 >>I THINK WHAT IS SO 2648 01:38:31,520 --> 01:38:32,440 INTERESTING FROM MY 2649 01:38:32,440 --> 01:38:35,760 UNDERSTANDING BASED ON COMMUNITY 2650 01:38:35,760 --> 01:38:37,920 CONVERSATION SOME SOCIAL MEDIA 2651 01:38:37,920 --> 01:38:39,600 CONVERSATIONS AROUND TEENAGERS 2652 01:38:39,600 --> 01:38:42,080 AND MENTAL HEALTH AND WHAT IS 2653 01:38:42,080 --> 01:38:44,600 INTERESTING IN THAT PARTICULAR 2654 01:38:44,600 --> 01:38:46,920 CASE IS SOME POSTS MIGHT NO THE 2655 01:38:46,920 --> 01:38:48,400 BE TRANSPARENT OR HONEST OR TRUE 2656 01:38:48,400 --> 01:38:50,960 AND THAT IN AND OF ITSELF MIGHT 2657 01:38:50,960 --> 01:38:53,640 BE A SIGNAL AND REASONS THAT A 2658 01:38:53,640 --> 01:38:55,080 TEEN IS POSTING SOMETHING THAT 2659 01:38:55,080 --> 01:38:56,600 IS NOT GENUINE AND HOW DO WE CAN 2660 01:38:56,600 --> 01:38:58,440 THE FOR THAT ASPECT OF THE DATA 2661 01:38:58,440 --> 01:39:01,320 AS PART OF TRYING TO UNDERSTAND 2662 01:39:01,320 --> 01:39:04,880 MENTAL HEALTH FOR OUR TEENAGERS? 2663 01:39:04,880 --> 01:39:09,320 >>MY CONCERN WOULD BE IN 2664 01:39:09,320 --> 01:39:11,200 THINKING THAT AARON WOULD BE AN 2665 01:39:11,200 --> 01:39:14,800 EXAMPLE AND GO TO COMMUNITY AND 2666 01:39:14,800 --> 01:39:18,440 EXPLAIN ABOUT WOE ARE ABLE TO 2667 01:39:18,440 --> 01:39:23,920 LEARN XYZ AND CDC RELATED TO THE 2668 01:39:23,920 --> 01:39:27,400 PANDEMIC AND BROAD LY SPEAKING E 2669 01:39:27,400 --> 01:39:28,880 HAVE TO ARM PEOPLE IN THE 2670 01:39:28,880 --> 01:39:29,960 COMMUNITY WITH THAT INFORMATION. 2671 01:39:29,960 --> 01:39:33,280 I THIS I THAT WITHOUT THAT, NO. 2672 01:39:33,280 --> 01:39:35,640 I WOULDN'T WANT TO HAVE A 2673 01:39:35,640 --> 01:39:36,720 CONVERSATION TRYING TO EXPLAIN 2674 01:39:36,720 --> 01:39:38,920 TO PEOPLE WHY SOCIAL MEDIA AND 2675 01:39:38,920 --> 01:39:41,360 LISTENING TO CONVERSATIONS WITH 2676 01:39:41,360 --> 01:39:43,160 LOTS OF CONFUSION THAT ARE ABOUT 2677 01:39:43,160 --> 01:39:45,040 THOSE CONNECTIONS. 2678 01:39:45,040 --> 01:39:46,200 SO, ARMING US WITH THAT 2679 01:39:46,200 --> 01:39:49,960 INFORMATION COULD BE REALLY 2680 01:39:49,960 --> 01:39:50,200 POWERFUL. 2681 01:39:50,200 --> 01:39:51,760 >>WHAT IS SO INTERESTING ABOUT 2682 01:39:51,760 --> 01:39:54,240 THAT TOO IS IF WE ARE THINKING 2683 01:39:54,240 --> 01:39:56,640 ABOUT INTENTIONALITY BEHIND WHY 2684 01:39:56,640 --> 01:39:58,040 SOMEONE IS USING A CERTAIN 2685 01:39:58,040 --> 01:40:00,040 PLATFORM AND SOCIAL MEDIA IS 2686 01:40:00,040 --> 01:40:01,880 USED TO ENGAGE WITH FRIENDS OR 2687 01:40:01,880 --> 01:40:03,120 REASON THAT MIGHT GENERATE TYPES 2688 01:40:03,120 --> 01:40:05,400 OF DATA THAT IS INTERESTING AS A 2689 01:40:05,400 --> 01:40:06,920 SECONDARY ANALYSIS VERSUS GOING 2690 01:40:06,920 --> 01:40:09,560 INTO COMMUNITY TALKING TO SCHOOL 2691 01:40:09,560 --> 01:40:12,160 AND GROUP OF TEENS USING DATA 2692 01:40:12,160 --> 01:40:14,200 FOR THESE TYPES HOW IT WILL 2693 01:40:14,200 --> 01:40:15,760 CHANGE BEHAVIOR AND WHAT 2694 01:40:15,760 --> 01:40:18,040 PLATFORM GETS USED FOR. 2695 01:40:18,040 --> 01:40:19,160 >>LISA? 2696 01:40:19,160 --> 01:40:22,200 >>HI. I'M LISA LEHMANN AND 2697 01:40:22,200 --> 01:40:24,400 PRIMARY CARE PHYSICIAN AFIFATED 2698 01:40:24,400 --> 01:40:26,840 WITH HARVARD MEDICAL SCHOOL AND 2699 01:40:26,840 --> 01:40:30,120 PUBLIC HEALTH AND BIOETHICS 2700 01:40:30,120 --> 01:40:32,040 ENTRUSTED GOOGLE AND PREVIOUSLY 2701 01:40:32,040 --> 01:40:34,000 DIRECTOR OF ETHICS AT VA. I 2702 01:40:34,000 --> 01:40:36,080 WANTED TO FOAL OE UP FIRST OF 2703 01:40:36,080 --> 01:40:37,960 ALL IN RONNIE'S COMMENT AND 2704 01:40:37,960 --> 01:40:40,040 QUESTION ABOUT SOCIAL MEDIA USE 2705 01:40:40,040 --> 01:40:42,560 WITH AN EXPERIENCE FROM THE VA 2706 01:40:42,560 --> 01:40:44,920 AND JUST ASK -- I'M CURIOUS IF 2707 01:40:44,920 --> 01:40:48,360 THERE IS A SENSE IN WHICH THE 2708 01:40:48,360 --> 01:40:50,160 INTENTION OF THE DATA USE AS 2709 01:40:50,160 --> 01:40:52,280 WELL AS RELATIONSHIP THAT THE 2710 01:40:52,280 --> 01:40:54,640 PEOPLE WHO ARE USING DATA HAVE 2711 01:40:54,640 --> 01:40:56,440 TO THE INDIVIDUALS MAKES A 2712 01:40:56,440 --> 01:40:57,600 DIFFERENCE. I WILL GIVE AN 2713 01:40:57,600 --> 01:41:00,280 SKAMENT M HERE THAT IN THE VA WE 2714 01:41:00,280 --> 01:41:02,120 HAVE -- WE HAD AND CONTINUE TO 2715 01:41:02,120 --> 01:41:04,520 HAVE HUGE CHALLENGES AROUND 2716 01:41:04,520 --> 01:41:06,880 SUICIDE PREVENTION AND ONE OF 2717 01:41:06,880 --> 01:41:08,880 THE THINGS THAT WE THOUGHT ABOUT 2718 01:41:08,880 --> 01:41:12,640 AND EXPLORED WAS THE USE OF 2719 01:41:12,640 --> 01:41:14,880 INDIVIDUAL SOCIAL MEDIA DATA AND 2720 01:41:14,880 --> 01:41:17,880 DIGITAL PHENOTYPE AS WAY TO 2721 01:41:17,880 --> 01:41:21,600 PREDICT SUICIDE AND RISK OF 2722 01:41:21,600 --> 01:41:22,240 SUICIDE AND TO INTERVENE USING 2723 01:41:22,240 --> 01:41:24,560 AI ALGORITHMS AND SO I THINK IT 2724 01:41:24,560 --> 01:41:25,640 RAISES SOME INTERESTING 2725 01:41:25,640 --> 01:41:28,040 QUESTIONS ABOUT IS THAT A UNIQUE 2726 01:41:28,040 --> 01:41:29,400 SITUATION IN GIVEN THE 2727 01:41:29,400 --> 01:41:31,680 RELATIONSHIP THAT THE VA HAS TO 2728 01:41:31,680 --> 01:41:32,280 VETERANS? 2729 01:41:32,280 --> 01:41:34,240 THEIR INTENTION TO PREVENT HARM 2730 01:41:34,240 --> 01:41:36,800 AND DO GOOD IN THAT SPACE. 2731 01:41:36,800 --> 01:41:39,360 USING PUBLICLY AVAILABLE DATA 2732 01:41:39,360 --> 01:41:41,320 AND I WILL THROW THAT OUT THERE 2733 01:41:41,320 --> 01:41:42,240 AND WASN'T MAIN REASON I STOOD 2734 01:41:42,240 --> 01:41:44,280 UP HERE. I HAVE ANOTHER 2735 01:41:44,280 --> 01:41:45,480 QUESTION, ONE THAT I WANTED TO 2736 01:41:45,480 --> 01:41:47,720 BRING US BACK TO IN TERMS OF 2737 01:41:47,720 --> 01:41:51,040 DATA SHARING AND DON'T KNOW IF I 2738 01:41:51,040 --> 01:41:57,000 SHOULD PAUSE THERE. 2739 01:41:57,000 --> 01:41:58,840 >>ONE THOUGHT IS, AGAIN, THIS 2740 01:41:58,840 --> 01:42:01,200 IS A SCENARIO THAT IS HIGH RISK 2741 01:42:01,200 --> 01:42:02,680 AND HIGH REWARD AND I CAN'T 2742 01:42:02,680 --> 01:42:04,120 REMEMBER THE NAME OF THE COMPANY 2743 01:42:04,120 --> 01:42:05,800 AND CAME TO MIND WHEN YOU SAID 2744 01:42:05,800 --> 01:42:07,840 THAT A COMPANY WORKING WITH 2745 01:42:07,840 --> 01:42:10,640 RESEARCH GROUP INSTALLING A 2746 01:42:10,640 --> 01:42:12,200 KEYBOARD AND OPERATING SYSTEM 2747 01:42:12,200 --> 01:42:14,160 LEVEL OF A KEYBOARD AND GOAL WAS 2748 01:42:14,160 --> 01:42:18,120 TO MEASURE AND SOMEBODY N LINE 2749 01:42:18,120 --> 01:42:20,840 COULD -- MEASURE WHAT PEOPLE 2750 01:42:20,840 --> 01:42:21,960 DELETED AND DIDN'T TYPE IN OR 2751 01:42:21,960 --> 01:42:24,320 POST OR TEXT TO FRIENDS AND HOW 2752 01:42:24,320 --> 01:42:26,840 OFTEN THEY DELETED MESSAGES BACK 2753 01:42:26,840 --> 01:42:28,360 AND FORTH WHERE THEY PAUSE THE 2754 01:42:28,360 --> 01:42:30,360 AND DEFLECTED IT AND HAD 2755 01:42:30,360 --> 01:42:34,200 CORRELATIONS TO ALL KINDS OF 2756 01:42:34,200 --> 01:42:35,760 DIFFERENT POTENTIAL EMOTIONAL, 2757 01:42:35,760 --> 01:42:37,360 YOU KNOW, CONDITIONS TO BE 2758 01:42:37,360 --> 01:42:40,240 LINKED TO THAT IS VERY INVASIVE; 2759 01:42:40,240 --> 01:42:40,920 RIGHT? 2760 01:42:40,920 --> 01:42:42,960 THINGS YOU DON'T SEND ARE 2761 01:42:42,960 --> 01:42:44,280 ARGUABLY MORE INDICATIVE OF 2762 01:42:44,280 --> 01:42:48,560 THINGS YOU DO SEND AND POINT IS 2763 01:42:48,560 --> 01:42:50,480 WELL-TAKEN. WE HAVE TO THINK 2764 01:42:50,480 --> 01:42:51,480 INNOVATIVELY IN THESE SPACES. 2765 01:42:51,480 --> 01:42:53,120 >>I WOULD SAY I TEND TO BE THE 2766 01:42:53,120 --> 01:42:55,160 TYPE OF PERSON SAYING IF DATA 2767 01:42:55,160 --> 01:42:56,520 ALREADY OUT THERE WE SHOULD PUT 2768 01:42:56,520 --> 01:42:59,120 THEM TO GOOD USE AND WHAT IS A 2769 01:42:59,120 --> 01:43:01,240 BETTER USE THAN PREVENTING 2770 01:43:01,240 --> 01:43:03,040 SUICIDE ORE A DEATH? 2771 01:43:03,040 --> 01:43:05,880 FOR ME THAT LENDS ME TO BE 2772 01:43:05,880 --> 01:43:06,600 CAUTIOUSLY SUPPORTIVE OF THAT 2773 01:43:06,600 --> 01:43:08,680 KIND OF USE. 2774 01:43:08,680 --> 01:43:10,400 HOWEVER, I'M VERY MUCH CONCERNED 2775 01:43:10,400 --> 01:43:12,560 ABOUT DIVERTING EFFORTS AWAY 2776 01:43:12,560 --> 01:43:14,200 FROM ATTENTION THAT PEOPLE NOT 2777 01:43:14,200 --> 01:43:16,160 ON SOCIAL MEDIA NEED AS WELL. 2778 01:43:16,160 --> 01:43:16,480 RIGHT? 2779 01:43:16,480 --> 01:43:20,880 FOR ME, IT IS THAT CALIBRATION 2780 01:43:20,880 --> 01:43:22,280 OF RESOURCES AND IS THAT WHERE 2781 01:43:22,280 --> 01:43:24,040 WE SHOULD BE PRIORITIZING? 2782 01:43:24,040 --> 01:43:27,760 MAYBE NOT OR MAYBE SO. YOU IF 2783 01:43:27,760 --> 01:43:28,720 KNOW? 2784 01:43:28,720 --> 01:43:29,520 BUT -- 2785 01:43:29,520 --> 01:43:31,520 >>YOUR POINT ABOUT RELATIONSHIP 2786 01:43:31,520 --> 01:43:33,240 RESONATES WITH ME AND ANY TIME 2787 01:43:33,240 --> 01:43:35,280 WITH VA AND VETERANS AND HAVING 2788 01:43:35,280 --> 01:43:37,200 A TRUSTED RELATIONSHIP AND TYPES 2789 01:43:37,200 --> 01:43:38,960 OF THINGS MATTERING TO THE 2790 01:43:38,960 --> 01:43:41,200 COMMUNITY THAT INSTITUTION OR 2791 01:43:41,200 --> 01:43:42,400 RESEARCHERS CAN THEN RESPOND TO. 2792 01:43:42,400 --> 01:43:45,400 I THINK OF THAT AS A REALLY 2793 01:43:45,400 --> 01:43:47,040 GREAT EXAMPLE WHY THIS TRUST 2794 01:43:47,040 --> 01:43:48,640 BUILDING IS SO IMPORTANT. SO, 2795 01:43:48,640 --> 01:43:52,880 WHEN -- IF THE VA IS APPROACHING 2796 01:43:52,880 --> 01:43:55,200 VETERANS TALKING ABOUT 2797 01:43:55,200 --> 01:43:56,200 INITIATIVE CHANCE OF TRUST 2798 01:43:56,200 --> 01:43:57,680 BELIEVING IT WILL BE USE TOED R 2799 01:43:57,680 --> 01:43:59,240 GOOD AND TO ENGAGE IN PARTICULAR 2800 01:43:59,240 --> 01:44:01,360 WAYS WILL BE DIFFERENT THAN IF 2801 01:44:01,360 --> 01:44:03,480 IT IS ANOTHER ENTITY THAT 2802 01:44:03,480 --> 01:44:04,560 VETERANS ARE NOT FAMILIAR WITH 2803 01:44:04,560 --> 01:44:06,000 AND MORE CONCERN ABOUT WHAT ELSE 2804 01:44:06,000 --> 01:44:08,920 MIGHT BE HAPPENING WITH DATA AND 2805 01:44:08,920 --> 01:44:11,360 WHAT ARE UNINTENDED CONSEQUENCES 2806 01:44:11,360 --> 01:44:12,760 THERE MIGHT BE AND APPRECIATE 2807 01:44:12,760 --> 01:44:15,800 YOUR POINT ABOUT THE 2808 01:44:15,800 --> 01:44:16,360 RELATIONSHIP THERE. 2809 01:44:16,360 --> 01:44:18,040 >>THANKS VERY MUCH. I WANT TO 2810 01:44:18,040 --> 01:44:19,720 ASK A QUESTION ABOUT DATA 2811 01:44:19,720 --> 01:44:21,400 SHARING POLICY AND IN 2812 01:44:21,400 --> 01:44:25,240 PARTICULAR, CURIOUS ABOUT YOUR 2813 01:44:25,240 --> 01:44:29,520 PERSPECTIVES ON THE CURRENT 2814 01:44:29,520 --> 01:44:33,640 LIMITATIONS ON PIPA AND PART OF 2815 01:44:33,640 --> 01:44:35,120 THE CHALLENGE WE HAVE ABOUT USE 2816 01:44:35,120 --> 01:44:38,120 OF DATA BY THE -- BY INDUSTRY OR 2817 01:44:38,120 --> 01:44:41,560 BY START-UPS OR BY -- AND 2818 01:44:41,560 --> 01:44:43,800 INTEGRATING MULTIPLE SOURCES OF 2819 01:44:43,800 --> 01:44:47,040 DATA. GENOMIC AND EHR DATA AND 2820 01:44:47,040 --> 01:44:48,920 WEARABLE DATA; RIGHT? 2821 01:44:48,920 --> 01:44:50,680 ALL DIFFERENT KINDS OF DATA THAT 2822 01:44:50,680 --> 01:44:54,240 WILL GIVE US REALLY POTENTIAL TO 2823 01:44:54,240 --> 01:44:57,760 REALIZE BENEFITS OF AI FOR 2824 01:44:57,760 --> 01:45:00,040 PATIENTS OUTCOMES AND DO WE NEED 2825 01:45:00,040 --> 01:45:05,240 A CHANGE IN POLICY THAT ALLOWS 2826 01:45:05,240 --> 01:45:07,160 US TO HAVE PRIVACY PROTECTIONS 2827 01:45:07,160 --> 01:45:11,120 MUCH MORE SIMILAR TO EUGPVR AND 2828 01:45:11,120 --> 01:45:13,040 THAT ALLOWS US TO HAVE THE 2829 01:45:13,040 --> 01:45:16,400 POLICIES FOLLOW THE DATA. 2830 01:45:16,400 --> 01:45:20,000 AS OPPOSED TO CUSTODIAN OF THE 2831 01:45:20,000 --> 01:45:21,560 DATA BECAUSE AN ORGANIZATION 2832 01:45:21,560 --> 01:45:26,280 COLLECTS DATE WLAU A HEALTH CARE 2833 01:45:26,280 --> 01:45:28,280 SYSTEM OR TECH COMPANY. 2834 01:45:28,280 --> 01:45:31,600 PROBLEM IS HIPAA DOESN'T APPLY 2835 01:45:31,600 --> 01:45:32,800 TO BUSINESSES AND RESTRICTIONS 2836 01:45:32,800 --> 01:45:34,720 ARE NOT THERE. I WANT TO JUST 2837 01:45:34,720 --> 01:45:36,200 POINT THAT OUT SAYING WHAT CAN 2838 01:45:36,200 --> 01:45:38,920 WE DO AS A COMMUNITY AT NIH AND 2839 01:45:38,920 --> 01:45:40,520 OTHERS TO REALLY HELP TO MOVE 2840 01:45:40,520 --> 01:45:46,120 THE POLICY FORWARD IN THIS SP 2841 01:45:46,120 --> 01:45:46,360 SPACE. 2842 01:45:46,360 --> 01:45:49,680 RELATE TODAY THAT I WILL REFLECT 2843 01:45:49,680 --> 01:45:52,080 ON MY EXPERIENCE AT GOOGLE WHERE 2844 01:45:52,080 --> 01:45:55,920 WE PUSHED FOR TREMENDOUS TRANCE 2845 01:45:55,920 --> 01:45:59,840 PAIRNCY AND PUBLIC/PRIVATE 2846 01:45:59,840 --> 01:46:01,600 PARTNERSHIPS ABOUT GOOGLE'S ROLE 2847 01:46:01,600 --> 01:46:05,960 DOING AI AND MACHINE LEARNING ON 2848 01:46:05,960 --> 01:46:10,040 DATA AND GOT THAT INTO CONSENTS. 2849 01:46:10,040 --> 01:46:12,080 THERE IS A REAL PUSHBACK FROM 2850 01:46:12,080 --> 01:46:14,200 HEALTH CARE SYSTEMS NOT WANTING 2851 01:46:14,200 --> 01:46:16,040 TO DISCLOSE THAT TO THEIR 2852 01:46:16,040 --> 01:46:16,480 PATIENTS. 2853 01:46:16,480 --> 01:46:18,120 I POINT THIS OUT. I THINK WE 2854 01:46:18,120 --> 01:46:20,360 HAVE A TENDENCY TO SAY IT IS ALL 2855 01:46:20,360 --> 01:46:22,200 -- INDUSTRY IS NOT TRYING TO DO 2856 01:46:22,200 --> 01:46:23,880 THE RIGHT THING. I DON'T THINK 2857 01:46:23,880 --> 01:46:26,160 IT IS THAT SIMPLE AND SOMETIMES 2858 01:46:26,160 --> 01:46:27,920 INDUSTRY IS ACTUALLY TRYING TO 2859 01:46:27,920 --> 01:46:31,360 DO THE RIGHT THING BEING ETHICAL 2860 01:46:31,360 --> 01:46:32,840 PUSHING FOR TRANSPARENCY HEALTH 2861 01:46:32,840 --> 01:46:35,600 CARE SYSTEMS ARE NOT ALWAYS 2862 01:46:35,600 --> 01:46:38,200 EAGER TO TAKE STEPS NECESSARY TO 2863 01:46:38,200 --> 01:46:42,200 BE TRANSPARENT WITH DATA 2864 01:46:42,200 --> 01:46:42,480 HOLDERS. 2865 01:46:42,480 --> 01:46:43,880 CURIOUS WHAT PEOPLE'S THOUGHTS 2866 01:46:43,880 --> 01:46:45,840 ARE AND OVERCOMING SOME OF THAT 2867 01:46:45,840 --> 01:46:47,400 AND MOVING TOWARDS GREATER 2868 01:46:47,400 --> 01:46:49,240 BETTER POLICIES WITH REGARD TO 2869 01:46:49,240 --> 01:46:52,720 PRIVACY PROTECTIONS IN THE U 2870 01:46:52,720 --> 01:47:03,000 SCHS 2871 01:47:32,560 --> 01:47:34,200 OUTSIDE OF THAT SPACE TOO. I 2872 01:47:34,200 --> 01:47:36,600 DON'T THINK HIPAA IS AS LIMITED 2873 01:47:36,600 --> 01:47:39,560 AS PEOPLE THINK IT IS. 2874 01:47:39,560 --> 01:47:40,680 PERCEPTION IS SOMETIMES 2875 01:47:40,680 --> 01:47:41,160 EVERYTHING. 2876 01:47:41,160 --> 01:47:41,880 RIGHT? 2877 01:47:41,880 --> 01:47:43,360 SO, I THINK IT WOULD BE GOOD FOR 2878 01:47:43,360 --> 01:47:45,840 US TO HAVE A NEW APPROACH, YOU 2879 01:47:45,840 --> 01:47:48,400 KNOW, IF ADPPA WOULD BE ADVANCED 2880 01:47:48,400 --> 01:47:50,520 THIS YEAR. I WOULDN'T BE UPSET 2881 01:47:50,520 --> 01:47:53,120 ABOUT THAT. SO, YEAH. I THINK 2882 01:47:53,120 --> 01:47:55,560 IN TERMS OF RELUCTANCE ISSUES 2883 01:47:55,560 --> 01:47:57,520 YOU MENTIONED WITH ARE WE USING 2884 01:47:57,520 --> 01:48:01,560 AI OR NOT USING AI? 2885 01:48:01,560 --> 01:48:04,120 A LOT OF THIS RELATES TO DO WE 2886 01:48:04,120 --> 01:48:07,080 HAVE DISRUPINNOVATION WE HAVE ON 2887 01:48:07,080 --> 01:48:10,040 THE POLICISIDE TO ACCOMPANY 2888 01:48:10,040 --> 01:48:11,840 TECHNOLOGY WE CAN'T THINK WHAT 2889 01:48:11,840 --> 01:48:14,320 WE HAVE WORKING OR NOT WORKING 2890 01:48:14,320 --> 01:48:15,960 SO WELL IN LEGAL FRAMEWORK THAT 2891 01:48:15,960 --> 01:48:17,560 WILL CONTINUE WITH THESE 2892 01:48:17,560 --> 01:48:19,000 TECHNOLOGIES AND VERY MUCH 2893 01:48:19,000 --> 01:48:22,200 LOOKING FORWARD TO FUTURE PANEL 2894 01:48:22,200 --> 01:48:24,240 DISCUSSIONS TODAY. 2895 01:48:24,240 --> 01:48:26,720 >>FOLLOWUP TO THAT QUESTION? 2896 01:48:26,720 --> 01:48:29,320 >>I FEEL WE COULD HAVE ANOTHER 2897 01:48:29,320 --> 01:48:33,680 HOUR ON THIS TOPIC ALONE AND YOU 2898 01:48:33,680 --> 01:48:35,360 ARE EXACTLY RIGHT AND A LOT OF 2899 01:48:35,360 --> 01:48:37,840 TIMES HIPAA ALLOWS FOR LOTS OF 2900 01:48:37,840 --> 01:48:39,160 THINGS THAT PEOPLE UNDERSTAND 2901 01:48:39,160 --> 01:48:42,400 THAT IT DOES. WE HAVE THOSE 2902 01:48:42,400 --> 01:48:45,040 CONVERSATIONS VERY OFTEN AND I 2903 01:48:45,040 --> 01:48:46,400 THINK THERE IS STILL JUST A -- 2904 01:48:46,400 --> 01:48:51,320 THERE IS AN OCEAN OF SORT OF 2905 01:48:51,320 --> 01:48:53,040 AMBIGUITY WHEN WHAT IT ACTUALLY 2906 01:48:53,040 --> 01:48:55,600 DOES OR DOESN'T DO TO PREVENT 2907 01:48:55,600 --> 01:48:57,400 PEOPLE FROM USING DATA FOR 2908 01:48:57,400 --> 01:48:59,080 DIFFERENT RESEARCH PURPOSES AND 2909 01:48:59,080 --> 01:49:07,040 I ALSO, YOU KNOW, I JUST -- I 2910 01:49:07,040 --> 01:49:10,800 THINK THAT WE -- MAYBE WE -- WE 2911 01:49:10,800 --> 01:49:12,960 OFTEN HAVE THESE CONVERSATIONS 2912 01:49:12,960 --> 01:49:16,000 IN HOSPITAL GROUPS WHERE 2913 01:49:16,000 --> 01:49:18,160 CONVERSATION IS DRIVEN FROM RISK 2914 01:49:18,160 --> 01:49:21,360 MOTIVATION OR INNOVATIVE OR 2915 01:49:21,360 --> 01:49:25,200 ANYTHING THAT IS POSITIVE 2916 01:49:25,200 --> 01:49:26,560 OUTCOME WISE FOR PATIENT OR 2917 01:49:26,560 --> 01:49:27,960 PARTICIPANTS AND WE SAW WITH 2918 01:49:27,960 --> 01:49:31,320 MASS DATA BREACHES AND HOSPITALS 2919 01:49:31,320 --> 01:49:33,000 AND EVERYTHING INTERTWINED 2920 01:49:33,000 --> 01:49:34,600 LAWYERS ARE ONES THAT QUASH 2921 01:49:34,600 --> 01:49:36,040 THESE THINGS IN MY EXPERIENCE 2922 01:49:36,040 --> 01:49:37,760 AND PRIVY TO CONVERSATIONS AND 2923 01:49:37,760 --> 01:49:40,280 HAVING SOMETHING REALLY AMAZING 2924 01:49:40,280 --> 01:49:41,360 THAT MIGHT HAVE PUSHED THE 2925 01:49:41,360 --> 01:49:43,760 ENVELOPE A LITTLE BIT AND SORRY. 2926 01:49:43,760 --> 01:49:45,040 >>LAWYERS IN LEGAL DEPARTMENTS. 2927 01:49:45,040 --> 01:49:46,320 >>SORRY. 2928 01:49:46,320 --> 01:49:48,400 >>LAWYERS ELSEWHERE WHO ARE 2929 01:49:48,400 --> 01:49:49,120 THINKING ABOUT. 2930 01:49:49,120 --> 01:49:49,600 >>YEAH. 2931 01:49:49,600 --> 01:49:51,400 >>SCIENCE AND NOT PROTECTING 2932 01:49:51,400 --> 01:49:53,480 ORGANIZATIONAL ASSETS, I THINK, 2933 01:49:53,480 --> 01:49:54,360 IS A DISTINCTION. 2934 01:49:54,360 --> 01:49:54,840 >>YEAH. 2935 01:49:54,840 --> 01:49:58,200 >>THAT IS IMPORTANT TO MAKE. 2936 01:49:58,200 --> 01:50:00,040 >>YEAH. EXACTLY. 2937 01:50:00,040 --> 01:50:05,080 >>OTHER REACTIONS? 2938 01:50:05,080 --> 01:50:07,760 >>BRIEFLY SAYING CIRCLES BACK 2939 01:50:07,760 --> 01:50:09,080 TO DISCUSSION ABOUT TRANSPARENCY 2940 01:50:09,080 --> 01:50:10,680 COMMUNITY AND CONVERSATION WITH 2941 01:50:10,680 --> 01:50:12,320 PEOPLE THAT ARE EXPERTS AND 2942 01:50:12,320 --> 01:50:13,960 THINKING ABOUT THIS IN HIPAA AND 2943 01:50:13,960 --> 01:50:15,800 WHAT 2 AFFORDS AND DOESN'T 2944 01:50:15,800 --> 01:50:17,560 AFFORD AND THINKING, AGAIN, 2945 01:50:17,560 --> 01:50:18,680 THINKING ABOUT ANY PATIENT WHO 2946 01:50:18,680 --> 01:50:21,120 IS THINKING ABOUT THIS NOT 2947 01:50:21,120 --> 01:50:22,080 REALLY UNDERSTANDING HIPAA AND 2948 01:50:22,080 --> 01:50:24,200 ITS REACH AND WHAT IT MEANS IN 2949 01:50:24,200 --> 01:50:25,800 TERMS WHAT THEY ARE CONSENTING 2950 01:50:25,800 --> 01:50:27,720 TO, YOU KNOW, CERTAIN TYPES OF 2951 01:50:27,720 --> 01:50:29,880 DATA SHARING AND WHAT IT MIGHT 2952 01:50:29,880 --> 01:50:32,400 MEAN FOR DATA FLOWING INTO OTHER 2953 01:50:32,400 --> 01:50:34,600 SPACES CIRCLING BACKING TO IDEA 2954 01:50:34,600 --> 01:50:38,160 HOW WE MAKE THAT TRANSPARENT AS 2955 01:50:38,160 --> 01:50:38,360 WELL. 2956 01:50:38,360 --> 01:50:39,400 >>RIGHT. 2957 01:50:39,400 --> 01:50:40,680 >>KRYSTAL? 2958 01:50:40,680 --> 01:50:42,920 >>HI, EVERYONE. THANK YOU AND 2959 01:50:42,920 --> 01:50:44,920 GOOD MORNING AND I'M KRYSTAL AND 2960 01:50:44,920 --> 01:50:46,880 I WILL SPEAK ON AN AFTERNOON 2961 01:50:46,880 --> 01:50:49,160 PANEL AND QUESTION TO THE 2962 01:50:49,160 --> 01:50:51,240 CURRENT PANELISTS IS, ONE, 2963 01:50:51,240 --> 01:50:53,000 RELATING TO INNOVATION 2964 01:50:53,000 --> 01:50:54,200 INEQUALITY. 2965 01:50:54,200 --> 01:50:58,440 SO, WE HAVE HAD NUMEROUS CALLS. 2966 01:50:58,440 --> 01:51:01,200 THE FIELDS ARE PROGRESSING 2967 01:51:01,200 --> 01:51:04,040 TOWARDS POLICIES OF OPEN DATA. 2968 01:51:04,040 --> 01:51:06,360 HOWEVER, THIS DOES NOT REALLY 2969 01:51:06,360 --> 01:51:11,080 BENEFIT TO PERMITINOVATIONS TO 2970 01:51:11,080 --> 01:51:13,320 BE OWNED ORE STEWARDED BY 2971 01:51:13,320 --> 01:51:16,800 COMMUNITIES COMPARED TO OTHER 2972 01:51:16,800 --> 01:51:19,560 ENTITIES THAT MIGHT MORE 2973 01:51:19,560 --> 01:51:21,360 INEQUITIBLY BENEFIT FROM OPEN 2974 01:51:21,360 --> 01:51:21,720 DATA. 2975 01:51:21,720 --> 01:51:24,240 FOR INSTANCE, WITH FOR PROFIT 2976 01:51:24,240 --> 01:51:26,560 COMPANIES, INSTANCE, THEY CAN, 2977 01:51:26,560 --> 01:51:30,520 OF COURSE, BENEFIT FROM 2978 01:51:30,520 --> 01:51:33,640 ACCESSING PUBLIC DATABASES AND 2979 01:51:33,640 --> 01:51:35,760 AT THE SAME TIME THEY CAN HOLD 2980 01:51:35,760 --> 01:51:37,880 THEIR OWN PRIVATE DATA AS A 2981 01:51:37,880 --> 01:51:40,080 FUNCTION OF PROTECTING THEIR OWN 2982 01:51:40,080 --> 01:51:40,600 INNOVATIONS. 2983 01:51:40,600 --> 01:51:43,360 I KNOW THIS TO BE TRUE. I 2984 01:51:43,360 --> 01:51:45,680 WORKED WITH THE LARGEST HEALTH 2985 01:51:45,680 --> 01:51:46,360 CARE MANAGEMENT ORGANIZATION IN 2986 01:51:46,360 --> 01:51:48,680 THE COUNTRY. I KIND OF 2987 01:51:48,680 --> 01:51:51,400 ASTOUNDED BY THE DIFFERENCES IN 2988 01:51:51,400 --> 01:51:52,720 ETHICS BETWEEN BIOMEDICAL 2989 01:51:52,720 --> 01:51:54,600 RESEARCH AND ACADEMIC 2990 01:51:54,600 --> 01:51:58,200 INSTITUTIONS VERSUS IN INDUSTRY 2991 01:51:58,200 --> 01:52:00,120 AND SIMILARLY ACADEMIC 2992 01:52:00,120 --> 01:52:01,480 INSTITUTIONS ARE ABLE TO ALSO 2993 01:52:01,480 --> 01:52:04,480 CLAIM INTELLECTUAL PROPERTY THAT 2994 01:52:04,480 --> 01:52:06,000 IS CODIFIED [INDISCERNIBLE] IN 2995 01:52:06,000 --> 01:52:07,760 THAT THEY ARE ABLE TO USE, YOU 2996 01:52:07,760 --> 01:52:09,560 KNOW, RESULTS OF FEDERALLY 2997 01:52:09,560 --> 01:52:11,320 FUNDED RESEARCH IN ORDER TO 2998 01:52:11,320 --> 01:52:13,040 CLAIM IP. 2999 01:52:13,040 --> 01:52:15,880 THE SAME CANNOT BE SAID FOR 3000 01:52:15,880 --> 01:52:17,200 COMMUNITIES AND ESPECIALLY 3001 01:52:17,200 --> 01:52:18,480 COMMUNITIES THAT ARE 3002 01:52:18,480 --> 01:52:22,040 PARTICULARLY FROM MY OWN THAT 3003 01:52:22,040 --> 01:52:23,200 ARE INDIGENOUS AND ARE SUBJECT 3004 01:52:23,200 --> 01:52:25,160 OF RARE VARIANT RESEARCH AND 3005 01:52:25,160 --> 01:52:30,200 ALSO BY A SUBSET OF US BEING NOT 3006 01:52:30,200 --> 01:52:32,960 REALLY PARTICIPATING IN 3007 01:52:32,960 --> 01:52:33,240 RESEARCH. 3008 01:52:33,240 --> 01:52:34,400 THERE IS A HIGH MOTIVATION TO 3009 01:52:34,400 --> 01:52:36,080 INCLUDE US IN RESEARCH. THERE 3010 01:52:36,080 --> 01:52:38,240 IS LOTS OF INTERESTS THAT ARE 3011 01:52:38,240 --> 01:52:41,240 NOT ONLY IN BIOLOGICALLY 3012 01:52:41,240 --> 01:52:43,200 SPECIFIC VARIANTS OF COMMUNITIES 3013 01:52:43,200 --> 01:52:45,360 AND TALKING ABOUT FACEBOOK DATA 3014 01:52:45,360 --> 01:52:48,520 THERE IS INTEREST IN ACCESS XHOD 3015 01:52:48,520 --> 01:52:51,760 PIING AND INCLUDING INDIGENOUS 3016 01:52:51,760 --> 01:52:53,560 LANGUAGES IN AI-MACHINE LEARNING 3017 01:52:53,560 --> 01:52:55,520 MODELS WORKING OUT IN 3018 01:52:55,520 --> 01:52:56,520 INNOVATIONS AND COMMODIFICATION 3019 01:52:56,520 --> 01:52:59,600 OF DATA IS SOMETHING THAT I'M 3020 01:52:59,600 --> 01:53:01,000 INCREDIBLY CONCERNED ABOUT, 3021 01:53:01,000 --> 01:53:02,760 ACTUALLY. HOW DO WE RESOLVE 3022 01:53:02,760 --> 01:53:06,160 THIS COMMUNITY-BASED INNOVATION 3023 01:53:06,160 --> 01:53:07,400 INNO QUALITY WHILE ALSO ASKING 3024 01:53:07,400 --> 01:53:11,480 FOR ACCESS TO COMMUNITIES? 3025 01:53:11,480 --> 01:53:14,360 AND THIS IS A DOVE-TAILED WITH 3026 01:53:14,360 --> 01:53:16,200 LATER QUESTION OF BENEFIT 3027 01:53:16,200 --> 01:53:17,040 EQUITY, OF COURSE. 3028 01:53:17,040 --> 01:53:19,200 HOW DO WE ACTUALLY ENSURE THAT 3029 01:53:19,200 --> 01:53:23,120 PROMISES THAT WE ARE ASKING OF 3030 01:53:23,120 --> 01:53:29,160 COMMUNITIES IN USING DATA 3031 01:53:29,160 --> 01:53:30,520 IDENTIFIES TO PROXIMAL BENEFITS 3032 01:53:30,520 --> 01:53:33,120 AND IS TIED TO INNOVATION 3033 01:53:33,120 --> 01:53:37,240 INEQUALITY FRAMEWORK. 3034 01:53:37,240 --> 01:53:37,840 >>THANK YOU. 3035 01:53:37,840 --> 01:53:39,880 >>I LOVE THAT QUESTION. IT IS 3036 01:53:39,880 --> 01:53:41,800 SOMETHING I HAVE THOUGHT A LOT 3037 01:53:41,800 --> 01:53:43,240 ABOUT WITH ONE PARTICULAR 3038 01:53:43,240 --> 01:53:45,400 COMMUNITY PARTNERSHIP I HAVE AND 3039 01:53:45,400 --> 01:53:52,600 IS PUBLIC HOUSING COMMUNITY IN 3040 01:53:52,600 --> 01:53:57,680 CHARLOTTESVILLE WHERE I LIVE AND 3041 01:53:57,680 --> 01:53:59,960 APPROXIMATE TO UVA HAS SITE 3042 01:53:59,960 --> 01:54:04,000 RESEARCH NOW AND PATTERNS WE SEE 3043 01:54:04,000 --> 01:54:05,560 WITH HISTORICALLY MARGINALIZED 3044 01:54:05,560 --> 01:54:08,000 COMMUNITIES SUBLT TO RESEARCH IN 3045 01:54:08,000 --> 01:54:09,200 TERMS OF TRUST AND DEEP 3046 01:54:09,200 --> 01:54:12,960 FRUSTRATION AND LAYERS THAT WE 3047 01:54:12,960 --> 01:54:13,560 THINK ABOUT. 3048 01:54:13,560 --> 01:54:15,920 WHAT HAS COME OFTEN TYPE OF 3049 01:54:15,920 --> 01:54:18,360 BEING HUMBLED OVER AND OVER 3050 01:54:18,360 --> 01:54:20,680 AGAIN AND THIS IS THE COMMUNITY 3051 01:54:20,680 --> 01:54:22,080 PARTNERSHIP THAT IS LONGEST THAN 3052 01:54:22,080 --> 01:54:24,240 I HAVE HAD AND STARTS OUT WITH 3053 01:54:24,240 --> 01:54:25,440 IDEA THIS IS A PARTICULAR 3054 01:54:25,440 --> 01:54:27,080 RESEARCH PROJECT AND WOULD IT 3055 01:54:27,080 --> 01:54:28,400 RESONATE AND AFTER A FEW YEARS 3056 01:54:28,400 --> 01:54:30,200 OF ENGAGEMENT AND ONE MOMENT 3057 01:54:30,200 --> 01:54:33,560 THAT WILL STICK WITH ME ABOUT MY 3058 01:54:33,560 --> 01:54:34,640 MAIN CONTACT PERSON THERE COMING 3059 01:54:34,640 --> 01:54:37,360 BACK SAYING YOU CAME WITH 3060 01:54:37,360 --> 01:54:41,160 RESEARCH IDEA THAT IS 20TH ON 3061 01:54:41,160 --> 01:54:42,920 LIST OF THINGS THAT MATTERED TO 3062 01:54:42,920 --> 01:54:46,520 US AND LED TO A CONVERSATION AND 3063 01:54:46,520 --> 01:54:50,160 INITIATION OF COMMUNITY RESEARCH 3064 01:54:50,160 --> 01:54:54,920 BOARD AND PUBLIC HOUSING 3065 01:54:54,920 --> 01:54:55,840 ASSOCIATES IN CHARLOTTESVILLE 3066 01:54:55,840 --> 01:54:58,120 AND THERE IS A PARTNERSHIP WITH 3067 01:54:58,120 --> 01:54:59,480 UNIVERSITY ANY RESEARCH TAKING 3068 01:54:59,480 --> 01:55:02,200 PLACE IN LOW INCOME COMMUNITIES 3069 01:55:02,200 --> 01:55:04,400 IN CHARLOTTESVILLE HAS TO GO 3070 01:55:04,400 --> 01:55:06,000 THROUGH THIS RESEARCH BOARD MADE 3071 01:55:06,000 --> 01:55:08,120 UP OF LOW-INCOME RESIDENTS OF 3072 01:55:08,120 --> 01:55:10,920 THE CITY DOESN'T MATTER IF 3073 01:55:10,920 --> 01:55:13,040 RESEARCH MAKING SURVEY-BASE REED 3074 01:55:13,040 --> 01:55:14,360 SEARCH OR RESEARCH HAPPENING IN 3075 01:55:14,360 --> 01:55:16,240 COMMUNITY OR USING SOCIAL MEDIA 3076 01:55:16,240 --> 01:55:17,960 DATA OF COMMUNITY MEMBERS; 3077 01:55:17,960 --> 01:55:18,840 RIGHT? 3078 01:55:18,840 --> 01:55:20,400 REGARDLESS WHAT IT IS IF 3079 01:55:20,400 --> 01:55:21,880 INVOLVING THIS COMMUNITY 3080 01:55:21,880 --> 01:55:23,480 RESIDENTS OF THIS COMMUNITY ARE 3081 01:55:23,480 --> 01:55:25,840 ONES THAT HAVE TO FIRST APPROVE 3082 01:55:25,840 --> 01:55:27,480 RESEARCH AND AS PART OF 3083 01:55:27,480 --> 01:55:28,920 CONVERSATION IS ABOUT DATA 3084 01:55:28,920 --> 01:55:30,240 OWNERSHIP. THEY HAVE TO ALSO 3085 01:55:30,240 --> 01:55:33,240 HAVE OWNERSHIP ALSO OF THAT DATA 3086 01:55:33,240 --> 01:55:38,120 AND UNIVERSITY HAS DONE ALSO 3087 01:55:38,120 --> 01:55:41,800 COMMITTED TO HAVING A PLACE 3088 01:55:41,800 --> 01:55:43,360 WHERE DATA IS STORED AND LAST 3089 01:55:43,360 --> 01:55:45,320 PART OF THAT MOVING FORWARD IS 3090 01:55:45,320 --> 01:55:47,200 THINKING ABOUT WHAT TYPES OF 3091 01:55:47,200 --> 01:55:48,960 RESEARCH QUESTIONS MATTER TO 3092 01:55:48,960 --> 01:55:50,840 COMMUNITY AND UNIVERSITY 3093 01:55:50,840 --> 01:55:52,680 COMMITTING TO HELPING COMMUNITY 3094 01:55:52,680 --> 01:55:56,200 FIND RESEARCHERS WHO WILL ENGAGE 3095 01:55:56,200 --> 01:55:57,600 WITH THEM AROUND THOSE DATA 3096 01:55:57,600 --> 01:55:59,240 COLLECTED AND COMMUNITY CAN USE 3097 01:55:59,240 --> 01:56:01,640 DATA FOR GRANTS THEY WANT TO 3098 01:56:01,640 --> 01:56:04,160 APPLY TO OR INITIATIVES THEY 3099 01:56:04,160 --> 01:56:06,560 WANT TO TAKE BECAUSE DATA CAME 3100 01:56:06,560 --> 01:56:08,760 FROM THEIR COMMUNITY. 3101 01:56:08,760 --> 01:56:10,440 >>I LOVE -- BACK HERE. WHERE 3102 01:56:10,440 --> 01:56:11,040 DID YOU GO? 3103 01:56:11,040 --> 01:56:15,760 >>I LOVE YOUR QUESTION. 3104 01:56:15,760 --> 01:56:19,320 AND JUST TO AT LAST MINUTE THAT 3105 01:56:19,320 --> 01:56:20,880 RUPA MENTIONED IN ANOTHER ASPECT 3106 01:56:20,880 --> 01:56:25,200 OF MY WORK I SIT ON HEALTH 3107 01:56:25,200 --> 01:56:26,320 EQUITY TASKFORCE COALITION AND 3108 01:56:26,320 --> 01:56:28,640 RECOMMENDATION THAT IS TRYING TO 3109 01:56:28,640 --> 01:56:30,760 BE PUT FORTH IS IN REGARDS TO 3110 01:56:30,760 --> 01:56:32,640 HAVING ADVISORY BOARDS IN THIS 3111 01:56:32,640 --> 01:56:35,240 SPACE THAT WOULD HAVE THE ACTION 3112 01:56:35,240 --> 01:56:41,280 THAT RUPA JUST DESCRIBED. 3113 01:56:41,280 --> 01:56:42,880 TO ENABLE COMMUNITIES WITH 3114 01:56:42,880 --> 01:56:44,480 BETTER SENSE OF OWNERSHIP AND 3115 01:56:44,480 --> 01:56:47,720 OWN DATA AND BEING PART OF THAT 3116 01:56:47,720 --> 01:56:50,200 PROCESS AND THINK AS AN EXAMPLE 3117 01:56:50,200 --> 01:56:51,960 OF SOMETHING THAT IS TANGIBLE 3118 01:56:51,960 --> 01:56:55,200 AND A GOOD STEP THAT CAN 3119 01:56:55,200 --> 01:56:57,000 ACTUALLY BE DONE WITHOUT A LOT 3120 01:56:57,000 --> 01:56:59,080 OF HEAVY LIFT. I WANTED TO 3121 01:56:59,080 --> 01:57:02,280 SHARE THAT. AWESOME QUESTION. 3122 01:57:02,280 --> 01:57:05,520 >>FANTASTIC QUESTION. 3123 01:57:05,520 --> 01:57:06,840 COMPLICATE TODAY ANSWER IN TERMS 3124 01:57:06,840 --> 01:57:09,800 OF DATA GOVERNANCE AND MOVING IT 3125 01:57:09,800 --> 01:57:12,040 FORWARD AND I ABSOLUTELY SHARE 3126 01:57:12,040 --> 01:57:14,000 CONCERNS ABOUT INEQUALITY AND I 3127 01:57:14,000 --> 01:57:17,840 GUESS IN ADDITION TO COMMENTS 3128 01:57:17,840 --> 01:57:20,600 THAT BOTH RAISED THAT THIS ISSUE 3129 01:57:20,600 --> 01:57:22,920 COMES BACK TO RIGHT TO SCIENCE 3130 01:57:22,920 --> 01:57:24,080 IS NOT JUST DOWNSTREAM BENEFIT 3131 01:57:24,080 --> 01:57:25,680 ABOUT YOU WHO GETS TO ASK 3132 01:57:25,680 --> 01:57:27,280 QUESTIONS AND WHO CONDUCTS 3133 01:57:27,280 --> 01:57:29,800 RESEARCH AND WHO PRIORITIZES 3134 01:57:29,800 --> 01:57:31,600 WHICH QUESTIONS GET ASKED AND SO 3135 01:57:31,600 --> 01:57:35,360 I THINK THAT WE NEED TO BE 3136 01:57:35,360 --> 01:57:37,400 LOOKING AT THAT ENTIRE PROCESS 3137 01:57:37,400 --> 01:57:41,360 OF SCIENCE IN ADDITION TO 3138 01:57:41,360 --> 01:57:41,960 DOWNSTREAM BENEFITS. 3139 01:57:41,960 --> 01:57:44,840 >>YEAH. GREAT QUESTION. 3140 01:57:44,840 --> 01:57:47,440 >>I THINK THAT I HOPE THAT MY 3141 01:57:47,440 --> 01:57:49,840 COMMENTS TODAY DON'T GET 3142 01:57:49,840 --> 01:57:51,880 MISCONSTRUED TO PUT ME SQUARELY 3143 01:57:51,880 --> 01:57:54,600 IN REMOVE ALL RESTRICTIONS 3144 01:57:54,600 --> 01:57:57,360 PRIVACIES DID I'M NOT IN THAT 3145 01:57:57,360 --> 01:57:59,200 CAMP BUT UNDERSTAND PRIVACY 3146 01:57:59,200 --> 01:58:00,520 SAFEGUARDS AND TO YOUR POINT 3147 01:58:00,520 --> 01:58:01,840 COMPANIES HAVE BENEFITS OF 3148 01:58:01,840 --> 01:58:04,040 PUBLIC DATA AND PRIVATE DATA 3149 01:58:04,040 --> 01:58:05,560 BUILDING ON TOP OF COMPANIES 3150 01:58:05,560 --> 01:58:07,720 WILL USE DATA FOR BENEFITS WITH 3151 01:58:07,720 --> 01:58:10,200 WHAT BUSINESSES NEED TO DO FOR 3152 01:58:10,200 --> 01:58:12,400 BUSINESS VALUE AND THINK THAT MY 3153 01:58:12,400 --> 01:58:14,240 INCLINATION TO BE MAYBE A LITTLE 3154 01:58:14,240 --> 01:58:17,480 MORE TO THAT SIDE OF WE NEED TO 3155 01:58:17,480 --> 01:58:19,240 MOVE A LITTLE MORE QUICKLY COMES 3156 01:58:19,240 --> 01:58:21,480 FROM LOTS OF THE CONCERNS THAT 3157 01:58:21,480 --> 01:58:24,400 RESEARCH DOES NEED TO BE 3158 01:58:24,400 --> 01:58:27,280 COUNTERBALANCE IF ANY HAVE 3159 01:58:27,280 --> 01:58:28,920 WATCHED FOR INSTANCE TESTIMONY 3160 01:58:28,920 --> 01:58:30,480 BEFORE CONGRESS CONGRESS DOESN'T 3161 01:58:30,480 --> 01:58:32,960 KNOW HOW TO -- SOME OF THE 3162 01:58:32,960 --> 01:58:35,320 QUESTIONS ASKED WERE, YOU KNOW, 3163 01:58:35,320 --> 01:58:37,360 JUST VERY, VERY, VERY OBVIOUSLY 3164 01:58:37,360 --> 01:58:38,960 THEY DON'T KNOW WHAT QUESTIONS 3165 01:58:38,960 --> 01:58:41,920 TO ASK AND I THINK THAT IT IS 3166 01:58:41,920 --> 01:58:43,280 INCUMBENT ON EVERYBODY IN THIS 3167 01:58:43,280 --> 01:58:44,880 ROOM AND FUNDING AND IMPORTANCE 3168 01:58:44,880 --> 01:58:47,640 WE PUT TO MOVE MORE QUICKLY TO 3169 01:58:47,640 --> 01:58:49,040 MATCH THE MOMENT BECAUSE THESE 3170 01:58:49,040 --> 01:58:51,080 DATA ARE BEING USED AND THEY ARE 3171 01:58:51,080 --> 01:58:53,400 RUNNING AWAY WITH IT IN A WAY 3172 01:58:53,400 --> 01:58:59,320 THAT IS COUNTERPRODUCTIVE TO 3173 01:58:59,320 --> 01:59:01,600 COMMONWEALTH AT LARGE. WE HAVE 3174 01:59:01,600 --> 01:59:02,920 TO RECOGNIZE WE DON'T HAVE 3175 01:59:02,920 --> 01:59:04,840 ACCESS TO DATA AND HAVE TO COME 3176 01:59:04,840 --> 01:59:07,200 UP WITH OWN DATA AND BE READY TO 3177 01:59:07,200 --> 01:59:09,240 PRESENT WHY LIMITATIONS FOR WHAT 3178 01:59:09,240 --> 01:59:11,560 COMPANIES CAN DO WITH IT ARE 3179 01:59:11,560 --> 01:59:13,440 IMPORTANT. WE HAVE TO HAVE FAQS 3180 01:59:13,440 --> 01:59:16,800 AND PAPERS AND SCIENCE BEHIND IT 3181 01:59:16,800 --> 01:59:18,520 AND TO SAY THIS IS WHY AND WORK 3182 01:59:18,520 --> 01:59:21,040 THAT IS INNOVATIVE AND PRESSING 3183 01:59:21,040 --> 01:59:25,240 ENVELOPE TOO. WE ARE ABLE TO 3184 01:59:25,240 --> 01:59:28,320 HAVE COUNTERBALANCE THAT WE N 3185 01:59:28,320 --> 01:59:28,520 NEED. 3186 01:59:28,520 --> 01:59:30,200 >>WE HAVE A QUESTION FROM A 3187 01:59:30,200 --> 01:59:32,520 VIEWER ONLINE SAYING THAT SOME 3188 01:59:32,520 --> 01:59:35,360 DATA COLLECTION IS MANDATED NOT 3189 01:59:35,360 --> 01:59:37,160 CONSENTED AND NEWBORN SCREENING 3190 01:59:37,160 --> 01:59:39,160 AND PUBLIC HEALTH SURVEILLANCE 3191 01:59:39,160 --> 01:59:42,080 PROGRAMS GREAT SOURCE OF DATA 3192 01:59:42,080 --> 01:59:44,040 FOR SCREENING AND LIFELONG CARE 3193 01:59:44,040 --> 01:59:48,520 HOW DO WE LEVERAGE THIS WHILE 3194 01:59:48,520 --> 01:59:50,200 RESPECTING PRIVACY? 3195 01:59:50,200 --> 01:59:57,400 >>I MEAN, I WOULD JUST SAY THAT 3196 01:59:57,400 --> 02:00:00,240 LOTS OF THIS RELATES TO PRIVACY 3197 02:00:00,240 --> 02:00:02,200 NOT BEING ABSOLUTE AND PRIVACY 3198 02:00:02,200 --> 02:00:04,760 IS RELATIVE. IT IS ENTWINED 3199 02:00:04,760 --> 02:00:06,400 WITH ALL THESE RIGHTS IT THAT WE 3200 02:00:06,400 --> 02:00:10,920 HAVE. SO, FINDING A WAY TO BE 3201 02:00:10,920 --> 02:00:13,360 RESPECTFUL AND TRYING TO FIND A 3202 02:00:13,360 --> 02:00:16,600 WAY TO HAVE PROCESS INVOLVE 3203 02:00:16,600 --> 02:00:18,560 PEOPLE AND INVOLVE INPUT AND 3204 02:00:18,560 --> 02:00:19,600 ACTUAL SHARED DECISION MAKING 3205 02:00:19,600 --> 02:00:23,040 COULD BE USEFUL AND THINK IT 3206 02:00:23,040 --> 02:00:25,640 WOULD BE I WOULDN'T SUPPORT US 3207 02:00:25,640 --> 02:00:27,880 SAYING NO DON'T USE MANDATED OR 3208 02:00:27,880 --> 02:00:31,240 MANDATORY COLLECTED DATA FOR ANY 3209 02:00:31,240 --> 02:00:37,120 HEALTH PURPOSES THAT I THINK 3210 02:00:37,120 --> 02:00:39,600 THAT HURTS ALL OF US IN THE LONG 3211 02:00:39,600 --> 02:00:43,000 RUN AND WE SHOULD USE THAT TO 3212 02:00:43,000 --> 02:00:44,120 HELP EVERYBODY AND IS THIS 3213 02:00:44,120 --> 02:00:45,720 BALANCING OF PRIORITIES. 3214 02:00:45,720 --> 02:00:47,680 >>WE HAVE 8 MINUTES LEFT AND 3215 02:00:47,680 --> 02:00:49,480 NOT SEEING ANYONE AT THE 3216 02:00:49,480 --> 02:00:51,240 MICROPHONE NOR DOES IT LOOK LIKE 3217 02:00:51,240 --> 02:00:52,040 WE HAVE FURTHER QUESTIONS FROM 3218 02:00:52,040 --> 02:00:56,200 THE PUBLIC AND I WOULD LIKE TO 3219 02:00:56,200 --> 02:00:59,080 KIND OF FRAME A LAST QUESTION TO 3220 02:00:59,080 --> 02:01:00,440 PANELISTS WE CAN START WITH 3221 02:01:00,440 --> 02:01:03,360 AARON GOING DOWN THE TABLE AND 3222 02:01:03,360 --> 02:01:05,440 KOLBI ENDING WITH YOU TO MAKE 3223 02:01:05,440 --> 02:01:06,960 SURE YOU CAN ADD WHETHER OR NOT 3224 02:01:06,960 --> 02:01:10,160 THERE IS ANYTHING FROM 3225 02:01:10,160 --> 02:01:12,360 ENGAGEMENT SESSIONS THAT WE 3226 02:01:12,360 --> 02:01:13,680 FACILITATED OR RISKS TO MENTION 3227 02:01:13,680 --> 02:01:15,680 AND I WOULD LIKE YOU ALL TO TAKE 3228 02:01:15,680 --> 02:01:16,760 A COUPLE MINUTES. 3229 02:01:16,760 --> 02:01:18,520 EACH OF YOU HAS -- HAVE DONE 3230 02:01:18,520 --> 02:01:20,560 DIFFERENT FORMLES OF COMMUNITY 3231 02:01:20,560 --> 02:01:23,120 OR PUBLIC ENGAGEMENT THROUGH 3232 02:01:23,120 --> 02:01:25,800 YOUR OWN WORK IN VERY DIFFERENT 3233 02:01:25,800 --> 02:01:29,120 CONTEXTS IN SECTORS AND SPHERES 3234 02:01:29,120 --> 02:01:30,600 TO THINK ABOUT YOUR WORK AND 3235 02:01:30,600 --> 02:01:32,760 LESSONS LEARNED AND WE HEARD 3236 02:01:32,760 --> 02:01:33,840 ABOUT MANY OF THEM ALREADY 3237 02:01:33,840 --> 02:01:35,360 TODAY. IF THERE IS ANYTHING YOU 3238 02:01:35,360 --> 02:01:37,040 WANT TO SORT OF SHARE THAT YOU 3239 02:01:37,040 --> 02:01:38,400 HAVEN'T ALREADY SHARED AND 3240 02:01:38,400 --> 02:01:40,200 LESSONS LEARNED FROM YOUR OWN 3241 02:01:40,200 --> 02:01:44,120 WORK AS WELL AS POTENTIALLY 3242 02:01:44,120 --> 02:01:47,480 THOUGHTS RELATED TO WHAT -- WHAT 3243 02:01:47,480 --> 02:01:50,480 WE SHOULD THINK ABOUT IN TERMS 3244 02:01:50,480 --> 02:01:52,720 OF HOW TO ADVISE NIH ABOUT HOW 3245 02:01:52,720 --> 02:01:54,200 THEY SHOULD BE THINKING ABOUT 3246 02:01:54,200 --> 02:01:58,840 THEIR PROGRAMS AND POLICIES IN 3247 02:01:58,840 --> 02:02:01,200 THIS SPACE OF NOVEL DATA. WE 3248 02:02:01,200 --> 02:02:02,680 CAN START WITH YOU, AARON. 3249 02:02:02,680 --> 02:02:05,280 >>YES. I THINK THAT ONE THING 3250 02:02:05,280 --> 02:02:07,160 MAYBE WE DIDN'T TOUCH ON THAT I 3251 02:02:07,160 --> 02:02:09,120 -- I THINK WE NEED TO CONTINUE 3252 02:02:09,120 --> 02:02:12,240 TO HAVE CONVERSATIONS AROUND IS 3253 02:02:12,240 --> 02:02:14,720 THAT PEOPLE ARE GENERATING DATA 3254 02:02:14,720 --> 02:02:16,440 AND I THINK ONE THING WE HAVE 3255 02:02:16,440 --> 02:02:20,040 MADE A BIG INVESTMENT WITH OUR 3256 02:02:20,040 --> 02:02:21,200 PLATFORM FOR MOBILE OR SMART 3257 02:02:21,200 --> 02:02:22,440 WATCH ENGAGEMENT IS THINKING 3258 02:02:22,440 --> 02:02:24,920 THROUGH WAYS TO REALLY IN RAEL 3259 02:02:24,920 --> 02:02:27,320 ENGAGE WITH PEOPLE IN THIS DATA 3260 02:02:27,320 --> 02:02:28,640 AND THINK THAT WE ALWAYS HAVE 3261 02:02:28,640 --> 02:02:31,120 SORT OF SEEN RANDOMIZED CONTROL 3262 02:02:31,120 --> 02:02:32,920 TRIAL EVERYBODY GETS SAME THING 3263 02:02:32,920 --> 02:02:34,600 OR SAME INTERVENTION OR SAME -- 3264 02:02:34,600 --> 02:02:37,200 YOU KNOW, AND THAT IS NOT THE 3265 02:02:37,200 --> 02:02:40,000 WORLD IN WHICH WE LIVE IN, IN 3266 02:02:40,000 --> 02:02:41,240 ALL ASPECTS OF DIGITAL SPACE. 3267 02:02:41,240 --> 02:02:44,440 I WAS PICKING OUT A RUG FOR MY 3268 02:02:44,440 --> 02:02:46,000 OFFICE. I DIDN'T CHECK OUT AND 3269 02:02:46,000 --> 02:02:49,880 I GOT AN E-MAIL NEXT DAY SAYING 3270 02:02:49,880 --> 02:02:51,280 IT WAS ON SALE AND THOOEZ ARE 3271 02:02:51,280 --> 02:02:52,720 THREE OR FOUR THINGS THAT GO 3272 02:02:52,720 --> 02:02:54,880 WITH THAT RUG AND ARE PRETTY 3273 02:02:54,880 --> 02:02:55,280 NICE, ACTUALLY. 3274 02:02:55,280 --> 02:02:58,040 WE ARE GENERATING ALL THIS DATA 3275 02:02:58,040 --> 02:02:59,440 IN REAL-TIME AND SOME INNOVATIVE 3276 02:02:59,440 --> 02:03:02,200 GROUPS WE WORK WITH ARE REALLY 3277 02:03:02,200 --> 02:03:04,160 FIGURING OUT HOW TO TAILOR 3278 02:03:04,160 --> 02:03:05,760 EXPERIENCES IN A WAY THAT IS 3279 02:03:05,760 --> 02:03:07,200 MEANINGFUL AND ENGAGES WITH 3280 02:03:07,200 --> 02:03:08,600 PEOPLE WHO ARE CHOOSING TO BE 3281 02:03:08,600 --> 02:03:12,480 PART OF THE RESEARCH. AND IS 3282 02:03:12,480 --> 02:03:13,600 REAL-TIME AND IS ACTIONABLE 3283 02:03:13,600 --> 02:03:15,760 SOMETIMES AND IS REALLY SORT OF 3284 02:03:15,760 --> 02:03:17,640 PLANTING THE FLAG IN THE FUTURE 3285 02:03:17,640 --> 02:03:22,600 FOR WHERE I HOPE A LOT OF THESE 3286 02:03:22,600 --> 02:03:25,200 THEMES GO AND ADAPTIVE 3287 02:03:25,200 --> 02:03:27,520 INTERVENTIONS AND REAL-TIME DATA 3288 02:03:27,520 --> 02:03:28,760 COLLECTION THAT HAS INSIDE 3289 02:03:28,760 --> 02:03:30,400 SURFACE THAT IS ANOTHER AREA 3290 02:03:30,400 --> 02:03:39,800 THAT NIH CAN INVEST AND EXPLORE. 3291 02:03:39,800 --> 02:03:41,400 >>ITS HARD FOR ME TO ANSWER 3292 02:03:41,400 --> 02:03:42,680 THAT QUESTION I HAVE DONE WORK 3293 02:03:42,680 --> 02:03:45,400 IN CONTEXTS AND SPACES AND 3294 02:03:45,400 --> 02:03:47,240 REWARDING RESEARCH OR IMPORTANT 3295 02:03:47,240 --> 02:03:48,880 RESEARCH I HAVE DONE IN 3296 02:03:48,880 --> 02:03:50,920 ENGAGEMENT SPACE I HAVE HAD A 3297 02:03:50,920 --> 02:03:52,600 HARD TIME GETTING FUNDED AND 3298 02:03:52,600 --> 02:03:53,880 REALLY HARD TIME GETTING PEOPLE 3299 02:03:53,880 --> 02:03:58,040 TO SAY YES YOU CAN GO AHEAD AND 3300 02:03:58,040 --> 02:04:02,960 TAKE TIME TO DO THAT. 3301 02:04:02,960 --> 02:04:05,080 THAT IS WHERE MOST MEANINGFUL 3302 02:04:05,080 --> 02:04:06,920 INSIGHTS WERE FOUND FOR ME AND 3303 02:04:06,920 --> 02:04:08,200 THINKING BACK TO WHERE I AM AND 3304 02:04:08,200 --> 02:04:10,360 MY ROLE AND WHAT I HAVE LEARNED 3305 02:04:10,360 --> 02:04:14,240 AND WOULD LIKE TO SEE FUTURE IS 3306 02:04:14,240 --> 02:04:19,480 THINKING ABOUT GOVERNMENT HAS 3307 02:04:19,480 --> 02:04:20,720 OBLIGATION TO ADVANCE HUMAN 3308 02:04:20,720 --> 02:04:23,240 RIGHT TO SCIENCE AND HEALTH AND 3309 02:04:23,240 --> 02:04:25,240 INVOLVES RESPECTING THAT; RIGHT? 3310 02:04:25,240 --> 02:04:28,600 SO ITSELF IT WILL PREVENT PEOPLE 3311 02:04:28,600 --> 02:04:30,880 FROM ADVANCING THEIR OWN HEALTH 3312 02:04:30,880 --> 02:04:32,600 AND WOULD PROTECT THAT RIGHT BY 3313 02:04:32,600 --> 02:04:34,120 MAKING SURE OTHERS AND 3314 02:04:34,120 --> 02:04:37,920 NON-GOVERNMENTAL ACTORS ARE ALSO 3315 02:04:37,920 --> 02:04:39,760 RESPECTING THAT. 3316 02:04:39,760 --> 02:04:42,200 IT WOULD HELP CREATE CONDITIONS 3317 02:04:42,200 --> 02:04:43,920 TO FULFILL RIGHT TO HEALTH OR 3318 02:04:43,920 --> 02:04:46,000 SCIENCE AND LAST ONE IS WHERE I 3319 02:04:46,000 --> 02:04:50,200 THINK WE NEED REALLY THE NIH TO 3320 02:04:50,200 --> 02:04:59,240 HELP IN PAST FEW YEARS NIH HAS 3321 02:04:59,240 --> 02:05:01,440 MOVED TREMENDOUSLY IN THAT 3322 02:05:01,440 --> 02:05:02,680 DIRECTION AND SPACE AND SHOUTOUT 3323 02:05:02,680 --> 02:05:05,480 TO NIH FOR THAT AND WE HAVE TO 3324 02:05:05,480 --> 02:05:08,040 LEAN IN MORE AND ENGAGEMENT WORK 3325 02:05:08,040 --> 02:05:11,000 IF WE WANT TO BE SUCCESSFUL 3326 02:05:11,000 --> 02:05:13,160 NEEDS LONGER TERM FUNDING CAN'T 3327 02:05:13,160 --> 02:05:14,680 GO THROUGH NORMAL MECHANISMS 3328 02:05:14,680 --> 02:05:17,320 THAT ARE THERE AND 3329 02:05:17,320 --> 02:05:18,320 ADMINISTRATIVE SUPPLEMENTS FOR 3330 02:05:18,320 --> 02:05:20,560 BIOETHICS ISSUES IS HOW LOTS OF 3331 02:05:20,560 --> 02:05:23,000 THIS WORK GETS DONE AND CALL IS 3332 02:05:23,000 --> 02:05:25,400 FOR 12 MONTH FUNDING CYCLE AND 3333 02:05:25,400 --> 02:05:27,120 AWARDS TEND TO BE SHORTER THAN 3334 02:05:27,120 --> 02:05:29,960 12 MONTHS. IF YOU WANT TO BUILD 3335 02:05:29,960 --> 02:05:31,040 RELATIONSHIPS WITH COMMUNITIES 3336 02:05:31,040 --> 02:05:32,640 THAT WILL ENABLE THAT TRUST TO 3337 02:05:32,640 --> 02:05:36,640 BE BUILT; RIGHT? 3338 02:05:36,640 --> 02:05:38,680 THAT WILL HELP YOU ACHIEVE WHAT 3339 02:05:38,680 --> 02:05:40,440 TO GET OUT OF THAT WORK HAS TO 3340 02:05:40,440 --> 02:05:42,880 BE LONGER AND NOT JUST FLY IN 3341 02:05:42,880 --> 02:05:45,160 FOR ONE PROJECT AND GO TOWARDS 3342 02:05:45,160 --> 02:05:47,640 WHERE THE NEXT FUNDING IS. SO, 3343 02:05:47,640 --> 02:05:49,360 THAT IS THE BIG STORY I WOULD 3344 02:05:49,360 --> 02:05:51,160 SAY IS THAT WE JUST HAVE TO HAVE 3345 02:05:51,160 --> 02:05:55,040 SOME SORT OF REALIGNMENT OF OUR 3346 02:05:55,040 --> 02:05:56,600 PRIORITIES. 3347 02:05:56,600 --> 02:05:58,200 UNFORTUNATELY, MONEY PLAYS A 3348 02:05:58,200 --> 02:05:58,640 ROLE IN THAT. 3349 02:05:58,640 --> 02:06:01,040 >>SO, STARTING ABOUT I SAYING I 3350 02:06:01,040 --> 02:06:03,680 AM SO APPRECIATIVE OF SEEING 3351 02:06:03,680 --> 02:06:05,880 DIRECTION THAT NIH IS MOVING 3352 02:06:05,880 --> 02:06:07,640 WITH COMMUNITY CONVERSATIONS 3353 02:06:07,640 --> 02:06:09,840 THAT WERE HAD IN THE CONTEXT OF 3354 02:06:09,840 --> 02:06:11,680 THIS WORK AND IMAGINE US PUSHING 3355 02:06:11,680 --> 02:06:13,640 US FURTHER IN WAYS ECHOING WHAT 3356 02:06:13,640 --> 02:06:15,520 JEN IS SAYING AND HERE STARTING 3357 02:06:15,520 --> 02:06:17,080 WITH RESEARCH QUESTIONS WE HAVE 3358 02:06:17,080 --> 02:06:19,280 COME UP WITH AS A SCIENTIFIC 3359 02:06:19,280 --> 02:06:20,320 COMMUNITY GOING OUT TO THE 3360 02:06:20,320 --> 02:06:21,760 COMMUNITY ASKING THEM FOR 3361 02:06:21,760 --> 02:06:23,800 FEEDBACK ON THOSE AND WOULD THEY 3362 02:06:23,800 --> 02:06:25,560 BE WILLING TO ENGAGE AND TAKING 3363 02:06:25,560 --> 02:06:27,200 FOR THEM TO ENGAGE IN QUESTIONS 3364 02:06:27,200 --> 02:06:28,840 AND THERE IS A NEED TO CONTINUE 3365 02:06:28,840 --> 02:06:31,080 TO FLIP PARADIGM AND STARTING 3366 02:06:31,080 --> 02:06:32,200 WITH CONVERSATIONS WITH THE 3367 02:06:32,200 --> 02:06:33,440 COMMUNITY AND WHAT ARE QUESTIONS 3368 02:06:33,440 --> 02:06:36,000 THAT MATTER TO YOU AND INSTEAD 3369 02:06:36,000 --> 02:06:37,480 OF BEING DRIVEN BY NEW 3370 02:06:37,480 --> 02:06:38,840 TECHNOLOGIES AND DATA TYPES WHAT 3371 02:06:38,840 --> 02:06:40,520 QUESTIONS WE WANT TO ASK BECAUSE 3372 02:06:40,520 --> 02:06:42,280 THEY ARE AVAILABLE AND STARTING 3373 02:06:42,280 --> 02:06:43,840 WITH WHAT QUESTIONS MATTER AND 3374 02:06:43,840 --> 02:06:46,040 BASED ON WHAT TYPES OF 3375 02:06:46,040 --> 02:06:47,080 TECHNOLOGIES WE NEED TO ANSWER 3376 02:06:47,080 --> 02:06:48,920 THOSE PARTICULAR QUESTIONS OR 3377 02:06:48,920 --> 02:06:50,240 WHAT DATA IS NEED TODAY ANSWER 3378 02:06:50,240 --> 02:06:54,640 THOSE MRAR QUESTIONS IS ONE 3379 02:06:54,640 --> 02:06:56,240 OVERARCHING REFLECTION AND 3380 02:06:56,240 --> 02:06:57,960 CAPACITY BUILDING IN COMMUNITIES 3381 02:06:57,960 --> 02:06:59,360 THEMSELVES AND COMMUNITIES 3382 02:06:59,360 --> 02:07:00,360 THINKING ABOUT THEM AND WAYS 3383 02:07:00,360 --> 02:07:02,000 THEY GENERATE DATA OR 3384 02:07:02,000 --> 02:07:04,440 PARTICIPATE IN DATA GENERATION, 3385 02:07:04,440 --> 02:07:06,200 HOW DO WE ALSO BEYOND HAVING 3386 02:07:06,200 --> 02:07:08,400 REALLY AMAZING KIND OF STEPS IN 3387 02:07:08,400 --> 02:07:09,960 THE DIRECTION OF BRINGING IN 3388 02:07:09,960 --> 02:07:12,040 PEOPLE FROM HISTORICALLY 3389 02:07:12,040 --> 02:07:14,240 MARGINALIZED COMMUNITIES INTO 3390 02:07:14,240 --> 02:07:16,000 THE SCIENTIFIC WORKFORCE AND 3391 02:07:16,000 --> 02:07:17,080 BEYOND THAT AND HAVING PEOPLE 3392 02:07:17,080 --> 02:07:19,520 AND PROFESSIONAL TRAINING THAT 3393 02:07:19,520 --> 02:07:21,680 MAYBE MANY IN THIS ROOMLE HAVE 3394 02:07:21,680 --> 02:07:24,720 AND HOW WE MORE DEMOCRATIZE 3395 02:07:24,720 --> 02:07:26,120 SCIENCE WRITING ABILITY TO 3396 02:07:26,120 --> 02:07:27,960 ENGAGE AND ANALYZING DATA NOT 3397 02:07:27,960 --> 02:07:29,960 JUST OPEN DATA BUT BILLING 3398 02:07:29,960 --> 02:07:32,080 CAPACITY WITHIN COMMUNITIES TO 3399 02:07:32,080 --> 02:07:33,760 ANALYZE DATA AND ANSWER 3400 02:07:33,760 --> 02:07:36,000 QUESTIONS ON DATA THAT IS 3401 02:07:36,000 --> 02:07:36,320 AVAILABLE. 3402 02:07:36,320 --> 02:07:37,400 >>I WILL CLOSE. 3403 02:07:37,400 --> 02:07:40,360 I WANT TO JUST THINKING ABOUT 3404 02:07:40,360 --> 02:07:42,160 ENTIRE PROCESS I WANTED TO MAKE 3405 02:07:42,160 --> 02:07:44,920 SURE THAT EVERYONE IS AWARE HOW 3406 02:07:44,920 --> 02:07:47,440 MEANINGFUL IT WAS TO COMMUNITIES 3407 02:07:47,440 --> 02:07:49,800 THAT THE NIH AND WORKING GROUP 3408 02:07:49,800 --> 02:07:53,680 TOOK TIME TO SHOW UP TO COME TO 3409 02:07:53,680 --> 02:07:54,080 THEM. 3410 02:07:54,080 --> 02:07:56,120 TO INFORM THEM OF AT LEAST WHAT 3411 02:07:56,120 --> 02:07:58,280 WAS PLANNED OR WHAT PEOPLE WERE 3412 02:07:58,280 --> 02:08:00,760 SORT OF DREAMING UP EVEN IF THEY 3413 02:08:00,760 --> 02:08:02,200 DIDN'T FULLY UNDERSTAND THE 3414 02:08:02,200 --> 02:08:03,160 ENTIRE PROCESS. 3415 02:08:03,160 --> 02:08:05,760 SO, JUST THINKING ABOUT THE NEED 3416 02:08:05,760 --> 02:08:07,640 FOR A SUSTAINABLE COMMUNITY 3417 02:08:07,640 --> 02:08:09,640 ENGAGEMENT MODEL THROUGH ALL OF 3418 02:08:09,640 --> 02:08:11,720 THIS WORK IS SO VITALLY 3419 02:08:11,720 --> 02:08:12,000 IMPORTANT. 3420 02:08:12,000 --> 02:08:14,680 I ALSO WANTED TO JUST MENTION, 3421 02:08:14,680 --> 02:08:16,800 YOU KNOW, THINKING ABOUT THIS 3422 02:08:16,800 --> 02:08:18,760 IDEA OF TRUSTWORTHINESS WE 3423 02:08:18,760 --> 02:08:20,720 DISCUSSED EARLIER THAT I THINK 3424 02:08:20,720 --> 02:08:22,120 IS REALLY EXPLORING THROUGH 3425 02:08:22,120 --> 02:08:23,960 COMMUNITY ENGAGEMENT MECHANISMS 3426 02:08:23,960 --> 02:08:26,160 WHAT IT MEANS TO VARIOUS 3427 02:08:26,160 --> 02:08:27,600 COMMUNITIES AND I THINK 3428 02:08:27,600 --> 02:08:30,120 DEFINITELY IT NEEDS TO HAPPEN. 3429 02:08:30,120 --> 02:08:32,280 OF COURSE, BUILDING TRUST AND 3430 02:08:32,280 --> 02:08:35,360 MAINTAINING TRUST IS OBVIOUSLY 3431 02:08:35,360 --> 02:08:38,200 INCREDIBLY DIFFICULT. IT IS 3432 02:08:38,200 --> 02:08:41,120 VERY FRAGILE. 3433 02:08:41,120 --> 02:08:43,040 I THINK THAT RUPA MENTIONED IT 3434 02:08:43,040 --> 02:08:45,840 NOT JUST ABOUT A ONE-OFF AND 3435 02:08:45,840 --> 02:08:48,400 DROPPING OFF INTO A COMMUNITY 3436 02:08:48,400 --> 02:08:50,400 WITH ITS OWN HISTORICAL STOPPING 3437 02:08:50,400 --> 02:08:51,840 DOING THAT IS KIND OF I THINK 3438 02:08:51,840 --> 02:08:54,240 THE VIEW OF PEOPLE IN THE 3439 02:08:54,240 --> 02:08:55,440 COMMUNITY AND THINK THAT THE 3440 02:08:55,440 --> 02:08:57,040 OTHER THING I WANT TO SAY IS 3441 02:08:57,040 --> 02:08:58,320 IMPORTANT FOR EVERYONE IN THE 3442 02:08:58,320 --> 02:09:00,760 COMMUNITY ENGAGEMENT AND 3443 02:09:00,760 --> 02:09:02,600 RESEARCHER SPACE THAT WERE 3444 02:09:02,600 --> 02:09:05,720 OPERATING WITHIN A SOCIETY OF 3445 02:09:05,720 --> 02:09:08,000 DEEP MISTRUST. EVEN READING 3446 02:09:08,000 --> 02:09:11,160 WITHIN THE SUMMARIES FOR THIS. 3447 02:09:11,160 --> 02:09:14,760 OTHER SOCIETAL THINGS SUCH AS 3448 02:09:14,760 --> 02:09:16,520 RO-V. WADE BEING OVERTURNED CAME 3449 02:09:16,520 --> 02:09:20,280 UP MULTIPLE TIMES AND IN 3450 02:09:20,280 --> 02:09:23,400 MULTIPLE LOCATIONS AND IT IS 3451 02:09:23,400 --> 02:09:25,800 INCUMBENT UPON US IN THIS SPACE 3452 02:09:25,800 --> 02:09:27,440 KNOWING HOW FRAGILE AND INTENSE 3453 02:09:27,440 --> 02:09:29,560 THINGS ARE TO PUT IN REALLY THE 3454 02:09:29,560 --> 02:09:31,680 EFFORT AND WORK TO HAVE BETTER 3455 02:09:31,680 --> 02:09:33,480 OUTCOMES BY ENGAGING 3456 02:09:33,480 --> 02:09:34,200 INDIVIDUALS. 3457 02:09:34,200 --> 02:09:38,560 >>THANK YOU SO MUCH. KOLBI, 3458 02:09:38,560 --> 02:09:42,120 RUPA, JEN AND AARON EXPRESSING 3459 02:09:42,120 --> 02:09:42,640 DEEP GRATITUDE FOR YOUR 3460 02:09:42,640 --> 02:09:45,560 PARTICIPATION IN THIS NANL IS 3461 02:09:45,560 --> 02:09:46,520 INCREDIBLE PANEL AND VERY 3462 02:09:46,520 --> 02:09:50,200 INTERESTING AND THANKS VERY 3463 02:09:50,200 --> 02:09:58,600 MUCH. 3464 02:09:58,600 --> 02:10:01,960 >> WELCOME BACK FOR 3465 02:10:01,960 --> 02:10:04,120 THE SECOND PANEL OF OUR MEETING 3466 02:10:04,120 --> 02:10:06,680 TODAY. THIS PANEL IS GOING TO 3467 02:10:06,680 --> 02:10:09,040 FOCUS PARTICULARLY ON NEW TYPES 3468 02:10:09,040 --> 02:10:12,880 OF ANALYSIS SUCH AS ARTIFICIAL 3469 02:10:12,880 --> 02:10:14,840 INTELLIGENCE AND MACHINE 3470 02:10:14,840 --> 02:10:16,160 LEARNING. I AM VERY, VERY 3471 02:10:16,160 --> 02:10:18,440 PLEASED TO HAVE THIS PANEL OF 3472 02:10:18,440 --> 02:10:20,000 SPEAKERS WITH ME TODAY. 3473 02:10:20,000 --> 02:10:23,880 STARTING AT THE FAR END. MONICA 3474 02:10:23,880 --> 02:10:27,360 RODRIGUEZ IS SENIOR DIRECTOR AT 3475 02:10:27,360 --> 02:10:31,360 PYXIS PARTNERS WHO, AGAIN, LED 3476 02:10:31,360 --> 02:10:34,200 OUR COMMUNITY CONVERSATIONS. 3477 02:10:34,200 --> 02:10:35,960 MONICA HELPED TO DRIVE THIS 3478 02:10:35,960 --> 02:10:38,240 FORWARD FOR US IN THE PUBLIC 3479 02:10:38,240 --> 02:10:38,960 ENGAGEMENT. SHE WILL BE 3480 02:10:38,960 --> 02:10:41,960 SPEAKING IN THE VOICE OF THE 3481 02:10:41,960 --> 02:10:44,160 FOLKS WE TALKED WITH TODAY. 3482 02:10:44,160 --> 02:10:46,880 NEXT, WE HAVE MILDRED CHO, WHO 3483 02:10:46,880 --> 02:10:48,960 IS A PROFESSOR IN THE DEPARTMENT 3484 02:10:48,960 --> 02:10:51,200 OF PEDIATRICS IN DEPARTMENT OF 3485 02:10:51,200 --> 02:10:53,280 MEDICAL GENETICS IN THE 3486 02:10:53,280 --> 02:10:55,320 DEPARTMENT OF MEDICINE AT 3487 02:10:55,320 --> 02:10:57,560 STANFORD. HER AREAS OF INTEREST 3488 02:10:57,560 --> 02:11:01,280 ARE ETHICS ON SOCIAL IMPACTS 3489 02:11:01,280 --> 02:11:04,000 GENETIC RESEARCH AND BETA 3490 02:11:04,000 --> 02:11:05,000 APPLICATIONS AND RESEARCH 3491 02:11:05,000 --> 02:11:08,400 INCLUDING AI. NEXT IS LISA 3492 02:11:08,400 --> 02:11:10,000 LEHMANN A PRIMARY CARE PHYSICIAN 3493 02:11:10,000 --> 02:11:12,640 AND DIRECTOR AT BIOETHICS AT 3494 02:11:12,640 --> 02:11:15,600 HARVARD WITH A VERY INTERESTING 3495 02:11:15,600 --> 02:11:18,280 BACKGROUND OF THE INCLUDES BEING 3496 02:11:18,280 --> 02:11:21,240 DIRECTOR OF BIOETHICS AT GOOGLE. 3497 02:11:21,240 --> 02:11:26,240 FINALLY, WE HAVE JAY SCHNITZER, 3498 02:11:26,240 --> 02:11:28,320 WHO IS SENIOR VICE PRESIDENT AND 3499 02:11:28,320 --> 02:11:30,440 CHIEF TECHNOLOGY OFFICER AND 3500 02:11:30,440 --> 02:11:33,400 CHIEF MEDICAL OFFICER AT MOOIT 3501 02:11:33,400 --> 02:11:35,160 RE. HE HAS BEEN OVER HIS CAREER 3502 02:11:35,160 --> 02:11:38,440 A LEADER IN BIOMEDICAL HEALTH 3503 02:11:38,440 --> 02:11:40,440 AND SCIENCE INNOVATION. THANK 3504 02:11:40,440 --> 02:11:46,840 YOU SO MUCH FOR BEING HERE. 3505 02:11:46,840 --> 02:11:50,280 NEXT SLIDE. TERRIFIC. 3506 02:11:50,280 --> 02:11:56,440 THIS PANEL. 3507 02:11:56,440 --> 02:11:58,840 SUCH AS THOSE INCLUDING AI AND 3508 02:11:58,840 --> 02:12:00,120 ARTIFICIAL INTELLIGENCE AND 3509 02:12:00,120 --> 02:12:02,320 MACHINE LEARNING AND AS WITH THE 3510 02:12:02,320 --> 02:12:06,240 FIRST PANEL, TOPIC WAS 3511 02:12:06,240 --> 02:12:08,520 IDENTIFIED IN PHASE 1. 3512 02:12:08,520 --> 02:12:10,560 THEN TRANSLATED TO CASE STUDIES 3513 02:12:10,560 --> 02:12:12,800 FOR USE IN COMMUNITY 3514 02:12:12,800 --> 02:12:14,160 CONVERSATIONS AND, AGAIN, WE 3515 02:12:14,160 --> 02:12:17,920 WILL BE SORT OF -- THIS PANEL 3516 02:12:17,920 --> 02:12:19,960 WILL BE SPENT CONTEXTUALIZING 3517 02:12:19,960 --> 02:12:24,440 WHAT WE LEARNED FROM COMMUNITY 3518 02:12:24,440 --> 02:12:25,720 INTEGRATIONS AND FEEDBACK FOR 3519 02:12:25,720 --> 02:12:30,040 WORK WE DO AND WHAT NIH IS 3520 02:12:30,040 --> 02:12:35,240 THINKING ABOUT DOG AS WELL. 3521 02:12:35,240 --> 02:12:38,160 NEXT SLIDE. TO GIVE YOU BROAD 3522 02:12:38,160 --> 02:12:40,160 OVERVIEW WHAT WE HEARD FROM 3523 02:12:40,160 --> 02:12:41,720 CONVERSATIONS, AGAIN, FOCUSED ON 3524 02:12:41,720 --> 02:12:47,360 NEW TYPES OF ANALYSIS INCLUDED 3525 02:12:47,360 --> 02:12:51,720 SUPPORT FOR AI BUT DEPENDED ON 3526 02:12:51,720 --> 02:12:55,240 DEMONSTRATED RELIABILITY OF THE 3527 02:12:55,240 --> 02:12:57,560 ALGORITHMS AND IF -- IF THE 3528 02:12:57,560 --> 02:12:59,920 ALGORITHMS WERE IN FACT 3529 02:12:59,920 --> 02:13:01,560 RELIABLE, PARTICIPANTS WERE 3530 02:13:01,560 --> 02:13:06,440 EXCITED ABOUT SHARING DATA TO 3531 02:13:06,440 --> 02:13:09,960 RECEIVE ACCURATE DIAGNOSES AND 3532 02:13:09,960 --> 02:13:14,400 BETTER CARE TO ADDRESS HEALTH 3533 02:13:14,400 --> 02:13:18,520 ISSUES AND TRUSTING DECISIONS OF 3534 02:13:18,520 --> 02:13:20,400 HUMAN DOCTORS MORE AND WE WILL 3535 02:13:20,400 --> 02:13:22,240 TALK ABOUT AND YOU WILL HEAR 3536 02:13:22,240 --> 02:13:24,680 THEMES WE HEARD IN PANEL 1 COME 3537 02:13:24,680 --> 02:13:27,360 UP AGAIN IN PANEL 2. THIS TRUST 3538 02:13:27,360 --> 02:13:31,800 IS BASED ON LONGSTANDING 3539 02:13:31,800 --> 02:13:35,320 RELATIONSHIPS PARTICIPANTS ARE 3540 02:13:35,320 --> 02:13:37,640 AWARE OF POSSIBILITY OF BIAS AND 3541 02:13:37,640 --> 02:13:40,680 MISUSE OF ALGORITHMS AND STIGMA 3542 02:13:40,680 --> 02:13:42,800 AND HOW ELSE DATA AND ALGORITHMS 3543 02:13:42,800 --> 02:13:47,120 MIGHT BE USED AND WANT TO POINT 3544 02:13:47,120 --> 02:13:49,040 OUT MOST CONVERSATIONS HAPPENED 3545 02:13:49,040 --> 02:13:52,160 IN ADVANCE OF TREMENDOUS 3546 02:13:52,160 --> 02:13:55,360 EXPLOSION OF FOCUS ON AI AND 3547 02:13:55,360 --> 02:13:57,480 PARTICULARLY CHATGPT THAT 3548 02:13:57,480 --> 02:13:59,040 HAPPENED IN THE LAST FEW MONTHS 3549 02:13:59,040 --> 02:14:02,360 AND KEEP THAT IN MIND GOING 3550 02:14:02,360 --> 02:14:05,640 THROUGH THIS PANEL. 3551 02:14:05,640 --> 02:14:07,680 AS BEFORE WE WILL START WITH 3552 02:14:07,680 --> 02:14:11,120 REFLECTIONS FROM THE PANELISTS 3553 02:14:11,120 --> 02:14:13,920 WHAT THEY HEARD FROM COMMUNITY 3554 02:14:13,920 --> 02:14:14,840 CONVERSATIONS WHAT INITIAL 3555 02:14:14,840 --> 02:14:16,400 RESPONSES ARE TO THAT AND WOULD 3556 02:14:16,400 --> 02:14:18,240 LIKE TO START FIRST WITH MONICA. 3557 02:14:18,240 --> 02:14:20,600 IF YOU CAN TALK A BIT ABOUT WHAT 3558 02:14:20,600 --> 02:14:26,320 YOUR KEY TAKEAWAYS FROM THESE 3559 02:14:26,320 --> 02:14:27,360 CONVERSATIONS FROM YOUR 3560 02:14:27,360 --> 02:14:29,680 PERSPECTIVE AS A FACILITATOR. 3561 02:14:29,680 --> 02:14:31,120 >>THANKS SO MUCH AND FOR THE 3562 02:14:31,120 --> 02:14:35,320 OPPORTUNITY TO COME AND REALLY 3563 02:14:35,320 --> 02:14:38,720 BRING FORTH COMMENTS AND 3564 02:14:38,720 --> 02:14:42,440 REFLECTIONS AND PERSPECTIVE OF 3565 02:14:42,440 --> 02:14:43,320 THE COMMUNITY. 3566 02:14:43,320 --> 02:14:45,320 THEY ARE GRATEFUL TO BE PART OF 3567 02:14:45,320 --> 02:14:47,320 THIS PROCESS. WE TALKED ABOUT 3568 02:14:47,320 --> 02:14:49,320 TRUST AND IDEA OF 3569 02:14:49,320 --> 02:14:50,240 TRUSTWORTHINESS AND WANT TO SAY 3570 02:14:50,240 --> 02:14:53,000 ONE OF THE TAKEAWAYS THAT I HAD 3571 02:14:53,000 --> 02:14:56,840 WAS THAT TRUST IS ABOUT 3572 02:14:56,840 --> 02:15:02,000 RELATIONSHIPS AND ABOUT WHO IS 3573 02:15:02,000 --> 02:15:03,240 INVOLVED IN DESIGNING ALGORITHMS 3574 02:15:03,240 --> 02:15:06,120 AND SPECIFIC TOPICS AND WHO IS 3575 02:15:06,120 --> 02:15:07,320 ACTUALLY ANALYZING DATA AND FOR 3576 02:15:07,320 --> 02:15:10,760 -- YOU KNOW, WHEN YOU GET INTO 3577 02:15:10,760 --> 02:15:12,600 REAL SPECIFICS IN RESPECT TO 3578 02:15:12,600 --> 02:15:16,800 SCANNING FOR CERTAIN WORDS IS IT 3579 02:15:16,800 --> 02:15:18,600 CULTURALLY ADAPTED AND HUMOR 3580 02:15:18,600 --> 02:15:20,120 TAKING INTO ACCOUNT AND AS WELL 3581 02:15:20,120 --> 02:15:21,920 AS WHO IS SHARING BACK RESULT 3582 02:15:21,920 --> 02:15:24,680 WLZ RESEARCHER OR PHYSICIAN OR 3583 02:15:24,680 --> 02:15:26,680 SPECIALIST, ET CETERA, THOSE ARE 3584 02:15:26,680 --> 02:15:28,080 REALLY IMPORTANT PIECES. 3585 02:15:28,080 --> 02:15:30,080 AGAIN, THINKING ABOUT TRUST AS 3586 02:15:30,080 --> 02:15:31,480 THESE DIFFERENT TYPES OF 3587 02:15:31,480 --> 02:15:33,200 RELATIONSHIPS AND WHO HAS 3588 02:15:33,200 --> 02:15:34,760 CONTROL OF DATA DOWNSTREAM. WE 3589 02:15:34,760 --> 02:15:37,640 KNOW AND I THINK THAT THE 3590 02:15:37,640 --> 02:15:38,840 PARTICIPANTS REALLY UNDERSTOOD 3591 02:15:38,840 --> 02:15:40,680 THAT TECH WILL CONTINUE TO 3592 02:15:40,680 --> 02:15:41,640 DEVELOP OPPORTUNITIES WILL 3593 02:15:41,640 --> 02:15:43,080 CONTINUE TO DEVELOP AND LIKEWISE 3594 02:15:43,080 --> 02:15:47,120 WE DON'T KNOW WHAT POTENTIAL FOR 3595 02:15:47,120 --> 02:15:50,920 RISKS ARE. 3596 02:15:50,920 --> 02:15:53,840 THAT IS THE CONCERN AND PIECE 3597 02:15:53,840 --> 02:15:56,720 THAT WE COMMENT ON AND WHAT IS 3598 02:15:56,720 --> 02:15:59,360 ABOUT THAT PIECE OF RELIABILITY 3599 02:15:59,360 --> 02:16:03,360 AND ACCURACY AND COMING TO 3600 02:16:03,360 --> 02:16:04,880 SOCIAL MEDIA ONE THING TO 3601 02:16:04,880 --> 02:16:06,560 CONSIDER IS INDIVIDUALS AND 3602 02:16:06,560 --> 02:16:07,800 PARTICIPANTS AND COMMUNITY 3603 02:16:07,800 --> 02:16:09,960 MEMBERS ARE FAMILIAR WITH THEIR 3604 02:16:09,960 --> 02:16:11,840 USAGE OF SOCIAL MEDIA. I DON'T 3605 02:16:11,840 --> 02:16:15,320 MEAN THE ASPECT OF HOW IT IS 3606 02:16:15,320 --> 02:16:17,560 DISSEMINATED OR SHARED AND THEIR 3607 02:16:17,560 --> 02:16:19,200 -- WHETHER THEY SHARE ACCURATE 3608 02:16:19,200 --> 02:16:19,880 INFORMATION OR WHETHER 3609 02:16:19,880 --> 02:16:21,200 INFORMATION THEY READ ABOUT 3610 02:16:21,200 --> 02:16:23,000 THEIR YOU KNOW FRIENDS AND 3611 02:16:23,000 --> 02:16:24,280 FAMILY IS RELIABLE. 3612 02:16:24,280 --> 02:16:25,560 BECAUSE THEY HAVE AN 3613 02:16:25,560 --> 02:16:29,000 UNDERSTANDING FOR USAGE OF IT, I 3614 02:16:29,000 --> 02:16:32,400 THINK THAT THERE IS PERSPECTIVE 3615 02:16:32,400 --> 02:16:34,200 OR BELIEF FOR USING IT FOR 3616 02:16:34,200 --> 02:16:36,440 HEALTH OR DATA PURPOSES IS NOT 3617 02:16:36,440 --> 02:16:38,000 RELIABLE OR ACCURATE AND WILL 3618 02:16:38,000 --> 02:16:40,360 LEAVE IT AT THAT AS WE GET 3619 02:16:40,360 --> 02:16:40,600 STARTED. 3620 02:16:40,600 --> 02:16:43,120 >>THANK YOU SO MUCH. I WANT TO 3621 02:16:43,120 --> 02:16:44,560 EMPHASIZE YOUR POINT OF TRUST WE 3622 02:16:44,560 --> 02:16:47,880 KNOW FROM BIOETHICS LITERATURE 3623 02:16:47,880 --> 02:16:49,440 THAT THE MOST IMPORTANT THING 3624 02:16:49,440 --> 02:16:50,880 ABOUT WHETHER OR NOT SOMEBODY IS 3625 02:16:50,880 --> 02:16:53,200 GOING TO CONSENT TO A STUDY IS 3626 02:16:53,200 --> 02:16:55,080 IF THEY TRUST THE PERSON WHO IS 3627 02:16:55,080 --> 02:16:56,520 ASKING THEM TO CONSENT. 3628 02:16:56,520 --> 02:16:59,320 SO, WE REALLY NEED TO THINK HARD 3629 02:16:59,320 --> 02:17:01,320 ABOUT WHAT THAT LOOKS LIKE. AND 3630 02:17:01,320 --> 02:17:07,920 WHO IS CONDUCTING RESEARCH. 3631 02:17:07,920 --> 02:17:09,960 NEXT, MILDRED, CAN YOU TALK 3632 02:17:09,960 --> 02:17:10,920 ABOUT WHAT YOU GOT OUT OF THE 3633 02:17:10,920 --> 02:17:12,480 DATA IT THAT YOU SAW? 3634 02:17:12,480 --> 02:17:15,080 >>ACTUALLY, I SAW -- MAYBE I 3635 02:17:15,080 --> 02:17:18,040 WILL TAKE THIS OPPORTUNITY TO 3636 02:17:18,040 --> 02:17:20,000 TALK A LITTLE ABOUT CONTEX 3637 02:17:20,000 --> 02:17:21,920 CONTEXTUALIZING PROCESS MORE 3638 02:17:21,920 --> 02:17:24,440 THAN DATA THEMSELVES AND I 3639 02:17:24,440 --> 02:17:28,440 COMPLETELY AGREE THAT IS MY 3640 02:17:28,440 --> 02:17:30,680 IMPRESSIONS WHAT YOU SAID. 3641 02:17:30,680 --> 02:17:35,320 IN TERMS OF PROCESS, IT MIGHT BE 3642 02:17:35,320 --> 02:17:36,440 IMPORTANT TO UNDERSTAND THIS IS 3643 02:17:36,440 --> 02:17:38,880 AN ACTIVITY HOSTED BY NIH AND 3644 02:17:38,880 --> 02:17:41,920 THEIR FOCUS IS RIGHTLY ON 3645 02:17:41,920 --> 02:17:45,200 NIH-FUNDED RESEARCH AND 3646 02:17:45,200 --> 02:17:46,200 NIH-FUNDED RESEARCHERS AND WE 3647 02:17:46,200 --> 02:17:48,800 HAVE TO ALSO BE MINDFUL HOW THAT 3648 02:17:48,800 --> 02:17:50,400 RESEARCH IS NOT OCCURRING IN A 3649 02:17:50,400 --> 02:17:51,840 LITTLE GLASS BUBBLE THAT IS 3650 02:17:51,840 --> 02:17:55,240 OCCURRING IN THE WIDER WORLD. 3651 02:17:55,240 --> 02:17:57,760 THERE IS THREE CONTEXTUAL 3652 02:17:57,760 --> 02:17:59,280 FEATURES TO KEEP IN MIND AS WE 3653 02:17:59,280 --> 02:18:03,320 THINK ABOUT THIS SORT OF DATA. 3654 02:18:03,320 --> 02:18:09,160 FANTASTIC DATA, BY THE WAY FIRST 3655 02:18:09,160 --> 02:18:11,080 BIOMEDICAL RESEARCH IN THE 3656 02:18:11,080 --> 02:18:12,840 COUNTRY IS NOT DONE BY THE 3657 02:18:12,840 --> 02:18:14,760 GOVERNMENT BUT MOST BY INDUSTRY 3658 02:18:14,760 --> 02:18:16,600 AND A LOT AND TRUSTWORTHY 3659 02:18:16,600 --> 02:18:18,400 SCIENCE IS DONE BY GOVERNMENT 3660 02:18:18,400 --> 02:18:20,640 RESEARCHERS AND WHOLE ACTIVITY 3661 02:18:20,640 --> 02:18:22,560 OF BIOMEDICAL RESEARCH WILL BE 3662 02:18:22,560 --> 02:18:25,040 HEAVILY INFLUENCED IN PERCEPTION 3663 02:18:25,040 --> 02:18:26,800 AND INFLUENCED BY RESEARCH AS A 3664 02:18:26,800 --> 02:18:31,320 WHOLE MOST OF WHICH IS DONE BY 3665 02:18:31,320 --> 02:18:33,880 INDUS 3666 02:18:33,880 --> 02:18:34,120 INDUSTRY. 3667 02:18:34,120 --> 02:18:36,320 THAT IS ONE THING AND WE TALKED 3668 02:18:36,320 --> 02:18:37,720 ABOUT IN THE FIRST PANEL THAT 3669 02:18:37,720 --> 02:18:40,320 THERE ARE BLURRY LINES BETWEEN 3670 02:18:40,320 --> 02:18:42,960 RESEARCH AND OTHER ACTIVITIES 3671 02:18:42,960 --> 02:18:44,560 CLINICAL PRACTICE AND TECH AND 3672 02:18:44,560 --> 02:18:45,720 ENGINEERING AND OTHER THINGS 3673 02:18:45,720 --> 02:18:47,360 THAT IS HARD TO DRAW LINES AND 3674 02:18:47,360 --> 02:18:49,960 WHY THAT IS IMPORTANT IS 3675 02:18:49,960 --> 02:18:52,520 BECAUSE, ONE, THERE IS DIFFERENT 3676 02:18:52,520 --> 02:18:53,880 REGULATORY SYSTEMS AND OVERSIGHT 3677 02:18:53,880 --> 02:18:55,360 FOR ALL THOSE DIFFERENT 3678 02:18:55,360 --> 02:18:57,240 ACTIVITIES BASED ON WHETHER YOU 3679 02:18:57,240 --> 02:18:59,720 CLASSIFY IT AS RESEARCH OR HUMAN 3680 02:18:59,720 --> 02:19:02,240 SUBJECTS RESEARCH OR NOT HUMAN 3681 02:19:02,240 --> 02:19:03,640 SUBJECTS RESEARCH AND CLINICAL 3682 02:19:03,640 --> 02:19:05,440 PRACTICE AND ENGINEERING AND 3683 02:19:05,440 --> 02:19:07,120 THERE IS DIFFERENT MORAL 3684 02:19:07,120 --> 02:19:08,640 FRAMEWORKS AND PROFESSIONAL 3685 02:19:08,640 --> 02:19:10,320 GUIDELINES AND SO FORTH. HOW 3686 02:19:10,320 --> 02:19:12,240 YOU CLASSIFY THE ACTIVITY IS 3687 02:19:12,240 --> 02:19:13,920 IMPORTANT IN A POLICY SENSE. 3688 02:19:13,920 --> 02:19:16,080 STUFF THAT WE ARE TALKING ABOUT 3689 02:19:16,080 --> 02:19:20,640 IS REALLY NOT CLEAR WHAT BIN TO 3690 02:19:20,640 --> 02:19:21,480 PUT IT IN. 3691 02:19:21,480 --> 02:19:24,280 THE OTHER REASON WHY THAT IS 3692 02:19:24,280 --> 02:19:26,520 IMPORTANT IS BECAUSE IT IS IN 3693 02:19:26,520 --> 02:19:28,840 THIS SORT OF INTERDISCIPLINARY 3694 02:19:28,840 --> 02:19:30,240 SPACE. 3695 02:19:30,240 --> 02:19:32,320 AGAIN, YOU HAVE DIFFERENT ACTORS 3696 02:19:32,320 --> 02:19:34,280 AND DIFFERENT STAKEHOLDERS AND 3697 02:19:34,280 --> 02:19:37,120 YOU HAVE COMPUTER SCIENTISTS AND 3698 02:19:37,120 --> 02:19:40,280 SOFTWARE ENGINEERS AND 3699 02:19:40,280 --> 02:19:41,800 CLINICIANS AND DIFFERENT PEOPLE 3700 02:19:41,800 --> 02:19:43,560 COMING FROM DIFFERENT MORAL 3701 02:19:43,560 --> 02:19:46,240 TRADITIONS AND FRAMEWORKS THAT 3702 02:19:46,240 --> 02:19:48,000 RUN AWARE OF OTHER FRAMEWORKS IN 3703 02:19:48,000 --> 02:19:50,520 WHICH THEY ARE OPERATING; RIGHT? 3704 02:19:50,520 --> 02:19:57,640 OR REGULATIONS AND THAT SORT OF 3705 02:19:57,640 --> 02:19:57,880 THING. 3706 02:19:57,880 --> 02:19:59,720 LAST THING IS OTHER CONTEXTUAL 3707 02:19:59,720 --> 02:20:01,280 FEATURE IS WE ARE OPERATING IN 3708 02:20:01,280 --> 02:20:03,320 THIS SPACE WHERE ACTIVITY OF 3709 02:20:03,320 --> 02:20:05,520 RESEARCH IS NOW BEING DONE NOT 3710 02:20:05,520 --> 02:20:08,320 ONLY BY SORT OF PROFESSIONAL 3711 02:20:08,320 --> 02:20:09,640 SCIENTISTS; RIGHT? 3712 02:20:09,640 --> 02:20:11,320 THERE IS CITIZEN SCIENCE AND 3713 02:20:11,320 --> 02:20:12,600 COMMUNITY PARTNERS AND THAT SORT 3714 02:20:12,600 --> 02:20:16,760 OF THING. IT IS IMPORTANT TO 3715 02:20:16,760 --> 02:20:18,120 THINK ABOUT THE TERM COMMUNITIES 3716 02:20:18,120 --> 02:20:20,080 WHEN USING COMMUNITIES WHAT WE 3717 02:20:20,080 --> 02:20:23,360 MEAN BY THAT AND SHOULDN'T THINK 3718 02:20:23,360 --> 02:20:27,800 OF IT ONLY AS DATA SOURCES AND 3719 02:20:27,800 --> 02:20:29,960 USING TERM COMMUNITY WHAT WE ARE 3720 02:20:29,960 --> 02:20:31,240 REALLY OFTEN TALKING ABOUT IS 3721 02:20:31,240 --> 02:20:38,800 PEOPLE WE WANT TO GET DATA FROM. 3722 02:20:38,800 --> 02:20:41,600 I URNL US TO THINK ABOUT 3723 02:20:41,600 --> 02:20:43,080 RESEARCHER AND COMPANIES AND 3724 02:20:43,080 --> 02:20:44,440 STAKEHOLDERS AS WELL AND 3725 02:20:44,440 --> 02:20:46,600 COMMUNITIES HAVE TO BE IN DIRECT 3726 02:20:46,600 --> 02:20:47,800 CONVERSATIONS WITH EACH OTHER 3727 02:20:47,800 --> 02:20:51,200 NOT HAVING FILTERED 3728 02:20:51,200 --> 02:20:52,000 CONVERSATIONS CONTROLLING FLOW 3729 02:20:52,000 --> 02:20:55,520 OF INFORMATION BETWEEN ALL THOSE 3730 02:20:55,520 --> 02:21:04,960 COMMUNITIES. I WILL STOP THERE. 3731 02:21:04,960 --> 02:21:07,600 >>THANK YOU SO MUCH. LOTS OF 3732 02:21:07,600 --> 02:21:09,600 CONVERSATION IN 90 MINUTES ABOUT 3733 02:21:09,600 --> 02:21:11,640 CONTEXT OF ACADEMIA, GOVERNMENT 3734 02:21:11,640 --> 02:21:14,240 AND INYOU DUSTRY AND RULE SETS 3735 02:21:14,240 --> 02:21:15,560 AND NORMS IN DIFFERENT SPACES 3736 02:21:15,560 --> 02:21:21,080 AND HOW THEY DO OR DO NOT 3737 02:21:21,080 --> 02:21:23,000 INCENTIVIZE THE RIGHT KIND OF 3738 02:21:23,000 --> 02:21:24,440 BEHAVIOR AND WANT TO ALSO SPEND 3739 02:21:24,440 --> 02:21:26,840 OR ENSURE THAT WE KEEP COMING 3740 02:21:26,840 --> 02:21:30,480 BACK TO, YOU KNOW, HOW THE NIH 3741 02:21:30,480 --> 02:21:33,360 SHOULD RESPOND GIVEN THIS 3742 02:21:33,360 --> 02:21:33,800 CONTEXT; RIGHT? 3743 02:21:33,800 --> 02:21:34,880 >>RIGHT. 3744 02:21:34,880 --> 02:21:36,960 >>THIS DAY IS ABOUT TAKING DATA 3745 02:21:36,960 --> 02:21:38,200 AND INFORMATION AND 3746 02:21:38,200 --> 02:21:39,800 CONVERSATIONS WE HAVE HAD IN THE 3747 02:21:39,800 --> 02:21:41,080 LAST SEVERAL MONTHS WITH 3748 02:21:41,080 --> 02:21:43,000 DIFFERENT COMMUNITIES AND 3749 02:21:43,000 --> 02:21:46,240 DIFFERENT INDIVIDUALS AND 3750 02:21:46,240 --> 02:21:49,440 DIFFERENT COMMUNITIES AND TRYING 3751 02:21:49,440 --> 02:21:51,160 TO TRANSLATE THAT INTO POLICY 3752 02:21:51,160 --> 02:21:54,440 AND PRACTICE; RIGHT? 3753 02:21:54,440 --> 02:21:57,920 HOW WILL WE TAKE THESE 3754 02:21:57,920 --> 02:21:58,720 CONVERSATIONS AND HELP THEM 3755 02:21:58,720 --> 02:22:02,160 INFORM WHAT WE DO GOING FORWARD 3756 02:22:02,160 --> 02:22:04,960 GIVEN THIS BROADER CONTEXT OF 3757 02:22:04,960 --> 02:22:07,000 RESEARCH DONE IN THIS INDUSTRY. 3758 02:22:07,000 --> 02:22:08,520 THANK YOU. 3759 02:22:08,520 --> 02:22:12,320 >>WONDERFUL. THANKS SO MUCH. 3760 02:22:12,320 --> 02:22:17,200 REAL PLEASURE. I WANT TO FIRST 3761 02:22:17,200 --> 02:22:20,680 CLARIFY MY CURRENT AFFILIATION 3762 02:22:20,680 --> 02:22:26,640 IS ON FACULTY OF HARVARD NOT 3763 02:22:26,640 --> 02:22:29,720 CURRENTLY ON BIOETHICS AND AT 3764 02:22:29,720 --> 02:22:32,440 GOOGLE DIRECTOR OF BIOETHICS AND 3765 02:22:32,440 --> 02:22:35,320 TRUST AND VA NATIONAL CENTER FOR 3766 02:22:35,320 --> 02:22:37,200 ETHICS AND RULES THERE AND NOT 3767 02:22:37,200 --> 02:22:38,760 CURRENTLY IN THAT POSITION AT 3768 02:22:38,760 --> 02:22:40,720 HARVARD AND WANT TO CLARIFY 3769 02:22:40,720 --> 02:22:43,080 THAT. 3770 02:22:43,080 --> 02:22:48,000 SO, I WANT TO BEGIN BY 3771 02:22:48,000 --> 02:22:49,800 REFLECTING ON HOW IMPRESSED I 3772 02:22:49,800 --> 02:22:53,800 WAS WITH WAYS IN WHICH 3773 02:22:53,800 --> 02:22:55,600 PARTICIPANTS IN FOCUS GROUPS 3774 02:22:55,600 --> 02:22:59,320 WERE ABLE TO HIGHLIGHT AND 3775 02:22:59,320 --> 02:23:04,320 RECOGN 3776 02:23:04,320 --> 02:23:04,640 RECOGNIZE. 3777 02:23:04,640 --> 02:23:06,440 KEY ETHICAL CHALLENGES IN THIS 3778 02:23:06,440 --> 02:23:07,840 SPACE TO CALL OUT IMPORTANCE OF 3779 02:23:07,840 --> 02:23:09,840 TRUST THAT AS YOU SAY IS RELATED 3780 02:23:09,840 --> 02:23:12,440 TO RELATIONSHIPS, MONICA. WHEN 3781 02:23:12,440 --> 02:23:14,320 WE THINK ABOUT WHAT MILDRED SAID 3782 02:23:14,320 --> 02:23:16,200 IN TERMS OF FACT THAT MOST 3783 02:23:16,200 --> 02:23:19,720 RESEARCH IS DONE BY INDUSTRY AND 3784 02:23:19,720 --> 02:23:25,920 THAT RESEARCH PARTICIPANTS DON'T 3785 02:23:25,920 --> 02:23:27,040 HAVE RELATIONSHIPS WITH INDUSTRY 3786 02:23:27,040 --> 02:23:29,760 IN WAY THEY DO WITH THEIR HEALTH 3787 02:23:29,760 --> 02:23:32,840 CARE P PROVIDER IT POSES 3788 02:23:32,840 --> 02:23:34,520 OPPORTUNITIES, LET'S SAY, FOR 3789 02:23:34,520 --> 02:23:36,320 HOW TO THINK ABOUT TRUST AND GET 3790 02:23:36,320 --> 02:23:40,200 AT DIMENSIONS OF TRUST AND YOU 3791 02:23:40,200 --> 02:23:42,440 MIGHT BE AWARE FOR EXAMPLE OF 3792 02:23:42,440 --> 02:23:47,360 GREAT EMPIRICAL WORK DONE BY 3793 02:23:47,360 --> 02:23:51,320 EDLEMAN WHO DOES A TRUST BAR AM 3794 02:23:51,320 --> 02:23:55,360 TER AND EMPIRICAL RESEARCH 3795 02:23:55,360 --> 02:23:58,000 HIGHLIGHTS INCOMPETENCE THAT 3796 02:23:58,000 --> 02:24:00,440 PARTICIPANTS IN FOCUS GROUPS 3797 02:24:00,440 --> 02:24:01,880 IDENTIFIED LANGUAGE OF 3798 02:24:01,880 --> 02:24:05,640 RELIABILITY THAT IS IN MANY WAYS 3799 02:24:05,640 --> 02:24:09,200 ANALOGOUS TO CONCEPT OF THIS AND 3800 02:24:09,200 --> 02:24:13,520 EDELMAN POINTED OUT IDEA OF 3801 02:24:13,520 --> 02:24:20,240 BENEVOLENCE AND BEST INTEREST OF 3802 02:24:20,240 --> 02:24:26,400 SHARING DATA AND TALKING ABOUT 3803 02:24:26,400 --> 02:24:29,280 RECIPROCITY AND BENEFIT OF 3804 02:24:29,280 --> 02:24:32,840 INTEGRITY AND ARE THREE PRIMARY 3805 02:24:32,840 --> 02:24:34,440 DRIVERS OF TRUST. 3806 02:24:34,440 --> 02:24:38,120 I THINK OTHER THING WE SAW FROM 3807 02:24:38,120 --> 02:24:43,320 DATA IS HOW ENTWINED 3808 02:24:43,320 --> 02:24:44,920 RELATIONSHIPS AND CONCEPTS OF 3809 02:24:44,920 --> 02:24:46,320 AGENCY IS MEANING CONTROL OVER 3810 02:24:46,320 --> 02:24:50,160 THE DATA AND TRANSPARENCY AND 3811 02:24:50,160 --> 02:24:54,960 NEED FOR US TO DIVE DEEPER IN 3812 02:24:54,960 --> 02:24:56,760 TERMS OF DIVING DEEPER INTO 3813 02:24:56,760 --> 02:25:00,400 MEANING OF CONCEPTS AND HOW WE 3814 02:25:00,400 --> 02:25:01,760 OPERATIONALIZE TRANSPARENCY AND 3815 02:25:01,760 --> 02:25:04,040 TALKING ABOUT RELIABILITY, WE 3816 02:25:04,040 --> 02:25:08,080 NEED TO NOT ONLY THINK ABOUT 3817 02:25:08,080 --> 02:25:13,440 RELIABILITY OF A PARTICULAR 3818 02:25:13,440 --> 02:25:15,400 OUTPUT OF ALGORITHM BUT OF A 3819 02:25:15,400 --> 02:25:17,920 SYSTEM AND WHEN THINKING OF 3820 02:25:17,920 --> 02:25:19,160 INTEGRATION OF MACHINE LEARNING 3821 02:25:19,160 --> 02:25:22,120 AND AI AND HEALTH CARE IT IS NOT 3822 02:25:22,120 --> 02:25:23,360 JUST ABOUT OUTPUT OF A 3823 02:25:23,360 --> 02:25:26,760 PARTICULAR MODEL BUT ALL OF THE 3824 02:25:26,760 --> 02:25:27,960 DIFFERENT OR GOVERNANCE 3825 02:25:27,960 --> 02:25:29,720 STRUCTURES FOR DECIDING WHAT 3826 02:25:29,720 --> 02:25:30,800 ALGORITHMS WILL BE PUT INTO 3827 02:25:30,800 --> 02:25:34,320 PLACE. WHAT IS THE OVERSIGHT 3828 02:25:34,320 --> 02:25:36,400 MECHANISM OF THAT AI AND IN A 3829 02:25:36,400 --> 02:25:38,240 HEALTH CARE SETTING AND WHAT IS 3830 02:25:38,240 --> 02:25:40,320 DATA THAT WAS USED TO TRAIN THE 3831 02:25:40,320 --> 02:25:44,200 MODELS AND DO WE HAVE CLARITY ON 3832 02:25:44,200 --> 02:25:51,320 THE REPRESENTATION OF THAT DATA 3833 02:25:51,320 --> 02:25:54,760 TO ENSURE BENEFITS OF MACHINE 3834 02:25:54,760 --> 02:25:57,640 LEARNING AND AI WILL DIVOFL TO A 3835 02:25:57,640 --> 02:25:59,080 DIVERSE GROUP OF PARTICIPANTS 3836 02:25:59,080 --> 02:26:01,000 AND THINKING OF CLINICIANS IN 3837 02:26:01,000 --> 02:26:09,680 THIS SPACE AND PARTICIPANTS IN 3838 02:26:09,680 --> 02:26:11,320 FOCUS GROUPS HAD GREATER RISK 3839 02:26:11,320 --> 02:26:13,360 WITH CLINICIANS AND CLINICIANS 3840 02:26:13,360 --> 02:26:16,160 BECOMING RELIANT ON OUTPUT OF AI 3841 02:26:16,160 --> 02:26:18,160 ALGORITHM WE MIGHT ENCOUNTER 3842 02:26:18,160 --> 02:26:23,920 WHAT I CALL DESKILL IING THEY M 3843 02:26:23,920 --> 02:26:26,320 NOT APPROACH OUTCOME OF MODEL 3844 02:26:26,320 --> 02:26:29,320 AND OVER-RELIANCE ON AI OUTPUT 3845 02:26:29,320 --> 02:26:32,000 AND USING CLINICAL JUDGMENT AND 3846 02:26:32,000 --> 02:26:33,400 QUESTIONING IN WAY THAT THEY 3847 02:26:33,400 --> 02:26:35,920 NEED TO BE TO ENSURE THAT IT IS 3848 02:26:35,920 --> 02:26:39,320 BENEFICIAL TO PATIENTS AND THIS 3849 02:26:39,320 --> 02:26:46,040 IS A COMPLICATED SPACE DOING 3850 02:26:46,040 --> 02:26:47,320 RESPONSIBLY INTEGRATING AI AND 3851 02:26:47,320 --> 02:26:49,000 MACHINE LEARNING INTO SYSTEM AND 3852 02:26:49,000 --> 02:26:50,560 LEVERAGING BENEFITS OF DATA WE 3853 02:26:50,560 --> 02:26:54,080 HAVE TO THINK ABOUT THE ENTIRE 3854 02:26:54,080 --> 02:26:55,320 SYSTEM. 3855 02:26:55,320 --> 02:27:00,440 MAYBE I WILL PAUSE THERE AND 3856 02:27:00,440 --> 02:27:01,280 LOOKING FORWARD TO MANY 3857 02:27:01,280 --> 02:27:02,960 DIMENSIONS OF WORK THAT CAME OUT 3858 02:27:02,960 --> 02:27:03,720 OF THIS. 3859 02:27:03,720 --> 02:27:10,240 >>FANTASTIC. THANKS SO MUCH 3860 02:27:10,240 --> 02:27:12,400 PULLING ON TWO THREADS COMPUTER 3861 02:27:12,400 --> 02:27:15,080 SCIENTISTS DOING THIS WORK IN 3862 02:27:15,080 --> 02:27:17,240 INDUSTRY DESIGNING ALGORITHMS; 3863 02:27:17,240 --> 02:27:17,640 RIGHT? 3864 02:27:17,640 --> 02:27:18,800 THEY ARE NOT NECESSARILY 3865 02:27:18,800 --> 02:27:23,960 FAMILIAR WITH IRBS. 3866 02:27:23,960 --> 02:27:26,360 THEY ARE NOT TRAIN TODAY THINK 3867 02:27:26,360 --> 02:27:28,080 OF HUMAN SUBJECTS RESEARCH AND 3868 02:27:28,080 --> 02:27:32,040 ARE NOT FAMILIAR WITH NORMS THAT 3869 02:27:32,040 --> 02:27:36,360 SURROUND THAT WORK BUT LARGELY 3870 02:27:36,360 --> 02:27:38,520 ARE ONES DOING THE WORK. 3871 02:27:38,520 --> 02:27:40,160 >>I CAN ADD A COMMENT TO THAT 3872 02:27:40,160 --> 02:27:42,360 AND HOPE WE CAN TALK ABOUT 3873 02:27:42,360 --> 02:27:43,760 IMPLICATIONS OF FOR THIS FOR 3874 02:27:43,760 --> 02:27:44,200 POLICY. 3875 02:27:44,200 --> 02:27:44,520 >>YEAH. 3876 02:27:44,520 --> 02:27:46,600 >>SERIES OF THOUGHTS ON THAT 3877 02:27:46,600 --> 02:27:50,440 HIGHLIGHTING TWO THINGS RELATE 3878 02:27:50,440 --> 02:27:53,400 TODAY WHAT YOU SAID. 3879 02:27:53,400 --> 02:27:55,640 YOU ARE SPOT ON IN EXPERIENCE 3880 02:27:55,640 --> 02:27:58,120 WORKING IN INDUSTRY IN COMPANY 3881 02:27:58,120 --> 02:28:01,680 LARGELY DRIVEN BY ENGINEERS THAT 3882 02:28:01,680 --> 02:28:05,000 YOUR DESCRIPTION IS ACCURATE AND 3883 02:28:05,000 --> 02:28:06,840 ENGINEERS WANT TO KNOW WHAT TO 3884 02:28:06,840 --> 02:28:10,160 DO WITH AND ARE IN MY EXPERIENCE 3885 02:28:10,160 --> 02:28:11,720 EXTREMELY RECEPTIVE TO GUIDANCE 3886 02:28:11,720 --> 02:28:15,000 AND SUGGESTIONS HOW TO IMBED 3887 02:28:15,000 --> 02:28:18,000 ETHICS INTO THE WORK. 3888 02:28:18,000 --> 02:28:21,520 CHALLENGE IS I THINK WE NEED IRB 3889 02:28:21,520 --> 02:28:25,560 AND ANALOGY TO CLINICAL TRIALS 3890 02:28:25,560 --> 02:28:26,960 IN RESEARCH IN CLINICAL SETTINGS 3891 02:28:26,960 --> 02:28:28,760 IS HELPFUL IN THIS SPACE AND WE 3892 02:28:28,760 --> 02:28:31,080 NEED A RESEARCH REVIEW COMMITTEE 3893 02:28:31,080 --> 02:28:35,080 FOR AI OR IRBS TO DEVELOP THAT 3894 02:28:35,080 --> 02:28:37,000 SPECIAL EXPERTISE TO ANALYZE 3895 02:28:37,000 --> 02:28:41,240 THIS DATA AND RELATE TODAY THAT 3896 02:28:41,240 --> 02:28:42,920 COLLEAGUE MARY GRAY AN EDGE CYST 3897 02:28:42,920 --> 02:28:45,560 AT MICROSOFT WE HAVE PUT FORWARD 3898 02:28:45,560 --> 02:28:51,000 THIS IDEA OF WE NEED A BELL MONT 3899 02:28:51,000 --> 02:28:54,360 2.0 FOR SPACE IN HEALTH CARE 3900 02:28:54,360 --> 02:28:55,880 TAKING BELL MONT REPORT THE 3901 02:28:55,880 --> 02:28:57,360 FOUNDATION FOR RESEARCH ETHICS 3902 02:28:57,360 --> 02:28:59,720 IN THIS COUNTRY AND AROUND THE 3903 02:28:59,720 --> 02:29:01,440 WORLD EVEN AND THINKING ABOUT 3904 02:29:01,440 --> 02:29:03,000 UNIQUE CHALLENGES THAT SPACE OF 3905 02:29:03,000 --> 02:29:04,960 AI PRESENTS TO US AND DO WE HAVE 3906 02:29:04,960 --> 02:29:07,800 TO THINK ABOUT A NEW PARADIGM TO 3907 02:29:07,800 --> 02:29:09,240 HELP INFORM AND PROVIDE 3908 02:29:09,240 --> 02:29:10,760 STRUCTURE FOR THINKING ABOUT 3909 02:29:10,760 --> 02:29:12,440 ETHICS OF AI AND MACHINE 3910 02:29:12,440 --> 02:29:15,760 LEARNING AND HEALTH CARE. 3911 02:29:15,760 --> 02:29:19,080 >>GREAT. THANK YOU. 3912 02:29:19,080 --> 02:29:20,600 ONE THING TO SAY AGAIN TO SET UP 3913 02:29:20,600 --> 02:29:22,440 BEFORE WE MOVE TO JAY IS I 3914 02:29:22,440 --> 02:29:25,760 COMPLETELY AGREE WITH YOU THAT 3915 02:29:25,760 --> 02:29:30,440 THE COMMUNITY FOLKS WE TALK TO 3916 02:29:30,440 --> 02:29:32,080 HIGHLIGHTED ETHICAL PRINCIPLES 3917 02:29:32,080 --> 02:29:34,320 EVERYONE TALKS ABOUT IN AI AND 3918 02:29:34,320 --> 02:29:36,480 INFORMATION TO DIG DEEPER IN 3919 02:29:36,480 --> 02:29:38,440 TRANSPARENCY AND WE DEFINE IT 3920 02:29:38,440 --> 02:29:40,040 DIFFERENTLY THINKING IT ADHERES 3921 02:29:40,040 --> 02:29:42,960 TO DIFFERENT PEOPLE AND 3922 02:29:42,960 --> 02:29:45,440 DIFFERENT PEOPLE ARE RESPONSIBLE 3923 02:29:45,440 --> 02:29:47,960 FOR WHATEVER THIS THING WE CALL 3924 02:29:47,960 --> 02:29:51,320 TRANSPARENCY IS. WITH THAT 3925 02:29:51,320 --> 02:29:52,720 TURNING TO JAY. 3926 02:29:52,720 --> 02:29:55,320 >>THANK YOU, DEBRA. I TOO WANT 3927 02:29:55,320 --> 02:29:56,880 TO THANK EVERYONE FOR SETTING 3928 02:29:56,880 --> 02:30:01,000 THIS UP AND DOG INCREDIBLE WORK 3929 02:30:01,000 --> 02:30:06,440 AND INCLUDING ME. 3930 02:30:06,440 --> 02:30:08,080 NICE THING ABOUT THIS PANEL IS 3931 02:30:08,080 --> 02:30:10,840 STUFF ALREADY SAID AND 3932 02:30:10,840 --> 02:30:12,440 AMPLIFYING A COUPLE AND SOME 3933 02:30:12,440 --> 02:30:13,720 MORE AND AMPLIFYING THOUGHTS 3934 02:30:13,720 --> 02:30:16,680 THAT ARE PRESENTED AND I TOO WAS 3935 02:30:16,680 --> 02:30:19,120 IMPRESSED BY RESPONSES OF 3936 02:30:19,120 --> 02:30:21,120 COMMUNITY RESPONSES AND THEY 3937 02:30:21,120 --> 02:30:23,760 MADE GREAT SENSE AND HAD RIGHT 3938 02:30:23,760 --> 02:30:25,040 PRIORITIES PARTICULARLY AROUND 3939 02:30:25,040 --> 02:30:28,320 TOPICS OF TRUST AND PRIVACY AS 3940 02:30:28,320 --> 02:30:30,120 OVERARCHING ISSUES AND CONCERNS 3941 02:30:30,120 --> 02:30:31,400 THAT ARE QUESTIONABLY TWO 3942 02:30:31,400 --> 02:30:33,880 IMPORTANT ISSUES NEEDING TO BE 3943 02:30:33,880 --> 02:30:35,840 DEALT WITH. IMPLICIT IN 3944 02:30:35,840 --> 02:30:37,280 COMMENTS AROUND TRUSTING HUMAN 3945 02:30:37,280 --> 02:30:39,680 MORE THAN AI. I THINK THERE WAS 3946 02:30:39,680 --> 02:30:41,280 AN APPROPRIATE CONCERN ABOUT 3947 02:30:41,280 --> 02:30:44,400 WHETHER THE ANSWER FROM AN AI IS 3948 02:30:44,400 --> 02:30:46,440 CORRECT. THAT IS A CENTRAL 3949 02:30:46,440 --> 02:30:48,320 ISSUE TO COME BACK TO IN A 3950 02:30:48,320 --> 02:30:50,080 MOMENT. LISA ALREADY ELUDED TO 3951 02:30:50,080 --> 02:30:52,680 THERE IS ALSO THE CONCERN ABOUT 3952 02:30:52,680 --> 02:30:59,360 POTENTIAL BIAS PARTICULARLY 3953 02:30:59,360 --> 02:31:01,360 DEPENDING WHAT DATA SET USED FOR 3954 02:31:01,360 --> 02:31:02,960 TRAINING IS ABOUT AND ADDITIONAL 3955 02:31:02,960 --> 02:31:05,000 THOUGHTS AND ADDITIONS YOU HEARD 3956 02:31:05,000 --> 02:31:06,600 AND I HAVE FURTHER THOUGHTS IN 3957 02:31:06,600 --> 02:31:08,280 RESPONSE TO QUESTION 2. I WILL 3958 02:31:08,280 --> 02:31:11,320 TELL YOU FOUR THINGS FIRST THAT 3959 02:31:11,320 --> 02:31:13,240 I'M CONCERNED ABOUT. FIRST, IT 3960 02:31:13,240 --> 02:31:17,680 IS EASY FOR AI TO GET THE WRONG 3961 02:31:17,680 --> 02:31:23,720 ANSWER. AND NOT KNOW IT AND 3962 02:31:23,720 --> 02:31:27,120 NEITHER THE USER. AI LIES AS 3963 02:31:27,120 --> 02:31:30,000 CONVINCINGLY AS IT TELLS THE 3964 02:31:30,000 --> 02:31:31,320 TRUTH. IT DOESN'T KNOW WHICH IS 3965 02:31:31,320 --> 02:31:33,240 WHICH. NO. 2, FURTHER, THERE 3966 02:31:33,240 --> 02:31:34,960 HAVE BEEN SEVERAL EXAMPLES THAT 3967 02:31:34,960 --> 02:31:39,160 WE SALUTED TO THIS TOO EXAMPLE 3968 02:31:39,160 --> 02:31:42,400 OF SCIENTIFIC LITERATURE OF 3969 02:31:42,400 --> 02:31:44,160 DISCOVERY OF UNINTENDED AND 3970 02:31:44,160 --> 02:31:46,520 UNKNOWN BIAS OF STUDIES OF DATA 3971 02:31:46,520 --> 02:31:51,320 AND IMPLICATION OF AI-ENABLED 3972 02:31:51,320 --> 02:31:53,440 CONCLUSIONS OF RESEARCH STUDIES. 3973 02:31:53,440 --> 02:31:58,280 NO. 3, TOPIC OF DATA HAS TO BE 3974 02:31:58,280 --> 02:32:02,120 CENTRAL TO THE DISCUSSION. 3975 02:32:02,120 --> 02:32:03,640 MORE TO SAY ABOUT IT IN A 3976 02:32:03,640 --> 02:32:08,760 MOMENT. I DIDN'T HAD HEAR FROM 3977 02:32:08,760 --> 02:32:10,960 PARTICIPANTS ABOUT THAT SG. 3978 02:32:10,960 --> 02:32:12,400 4TH, TIMING IS EVERYTHING AND 3979 02:32:12,400 --> 02:32:15,480 CAME AFTER SESSIONS AND CHATGPT 3980 02:32:15,480 --> 02:32:17,640 HAS GONE VIRAL. IT WILL TEACH 3981 02:32:17,640 --> 02:32:19,560 US MANY, MANY THINGS IN COMING 3982 02:32:19,560 --> 02:32:22,360 MONTHS AND YEARS. IN FACT, IT 3983 02:32:22,360 --> 02:32:22,680 ALREADY HAS. 3984 02:32:22,680 --> 02:32:25,440 IN AREA OF SURPRISE, I WAS 3985 02:32:25,440 --> 02:32:26,840 SURPRISED THERE DIDN'T SEEM TO 3986 02:32:26,840 --> 02:32:28,480 BE MORE FOCUS OR INTEREST ON 3987 02:32:28,480 --> 02:32:31,120 DATA IN ADDITION TO ALGORITHMS 3988 02:32:31,120 --> 02:32:33,120 AND GARBAGE IN AND GARBAGE OUT 3989 02:32:33,120 --> 02:32:37,280 WE KNOW. DATA RELIABILITY AND 3990 02:32:37,280 --> 02:32:38,600 PROBE ANANCE ARE HUGE ISSUES 3991 02:32:38,600 --> 02:32:40,560 THAT ARE IMPORTANT HERE AND NOT 3992 02:32:40,560 --> 02:32:44,200 TO MENTION ISSUES OF OWNER 3993 02:32:44,200 --> 02:32:45,680 DATASHIP AND PERMISSIONSHIP AND 3994 02:32:45,680 --> 02:32:47,200 HOT ISSUES WE TALKED ABOUT 3995 02:32:47,200 --> 02:32:49,080 CONSENT AND WHO OWNS DATA. 3996 02:32:49,080 --> 02:32:51,040 THERE IS ISSUES OF SCALE AND NOT 3997 02:32:51,040 --> 02:32:54,440 JUST IN THE RESEARCH STUDIES BUT 3998 02:32:54,440 --> 02:32:58,200 ALSO IN APPLICATION OF THIS 3999 02:32:58,200 --> 02:32:59,520 APPROACH TO COMMUNITY RESPONSES 4000 02:32:59,520 --> 02:33:01,520 AND HOPE WE WILL TALK ABOUT THAT 4001 02:33:01,520 --> 02:33:03,000 MORE IN THE FURTHER DISCUSSION 4002 02:33:03,000 --> 02:33:04,960 AND I DIDN'T SEE MUCH DISCUSSION 4003 02:33:04,960 --> 02:33:07,320 OF VARIOUS SECTORS CONTRIBUTING 4004 02:33:07,320 --> 02:33:09,960 TO TECHNOLOGY AND INNOVATION IN 4005 02:33:09,960 --> 02:33:11,560 THE FUTURE AND LOVE MILDRED'S 4006 02:33:11,560 --> 02:33:13,360 WORD THAT I WILL HAVE A HARD 4007 02:33:13,360 --> 02:33:16,040 TIME PRONOUNCING BUT 4008 02:33:16,040 --> 02:33:17,720 CONTEXTUALIZING PROCESS THAT IS 4009 02:33:17,720 --> 02:33:19,040 ALL ABOUT THE DIFFERENT 4010 02:33:19,040 --> 02:33:20,800 COMPONENTS OF THE ECOSYSTEM THAT 4011 02:33:20,800 --> 02:33:23,000 PARTICIPATE IN RESEARCH AND FACT 4012 02:33:23,000 --> 02:33:26,200 THAT THE PRIVATE SECTOR INDUSTRY 4013 02:33:26,200 --> 02:33:29,400 FOR PROFIT INDUSTRY IS NOW 4014 02:33:29,400 --> 02:33:31,080 ECLIPSING THE AMOUNT OF RESEARCH 4015 02:33:31,080 --> 02:33:33,160 THAT IS DONE DOMESTICALLY IN THE 4016 02:33:33,160 --> 02:33:36,440 US AND REMINDING EVERYBODY 4017 02:33:36,440 --> 02:33:38,480 INTERNATIONALLY THAT IS BECOMING 4018 02:33:38,480 --> 02:33:40,360 A BIGGER AND BIGGER DRIVER OF 4019 02:33:40,360 --> 02:33:42,320 THESE RESEARCH PROBLEMS ACROSS 4020 02:33:42,320 --> 02:33:44,520 THE GLOBE AND CAN'T IGNORE IT OR 4021 02:33:44,520 --> 02:33:46,480 ALLOW IT TO GO ON WITHOUT OUR 4022 02:33:46,480 --> 02:33:48,200 THINKING ABOUT IT. 4023 02:33:48,200 --> 02:33:50,360 NEXT, I WOULD HOPE FOR MORE 4024 02:33:50,360 --> 02:33:52,320 PUBLIC INPUT ON GOVERNANCE 4025 02:33:52,320 --> 02:33:53,440 QUESTIONS AND WHO MAKES 4026 02:33:53,440 --> 02:33:54,720 IMPORTANT DECISIONS FOR THE 4027 02:33:54,720 --> 02:33:55,840 FUTURE IF ANYONE AND HOW. 4028 02:33:55,840 --> 02:33:58,120 IF WE DON'T, WHAT IS THE 4029 02:33:58,120 --> 02:33:59,200 DEFAULT? 4030 02:33:59,200 --> 02:34:02,640 FINALLY, I THINK THAT WE MUST 4031 02:34:02,640 --> 02:34:05,680 NEVER UNDERESTIMATE IMPORTANCE 4032 02:34:05,680 --> 02:34:07,680 OF UNEXPECTED SURPRISE. 4033 02:34:07,680 --> 02:34:09,080 TECHNOLOGY BREAKTHROUGHS LEADING 4034 02:34:09,080 --> 02:34:11,800 TO ENORMOUS IMPACTS HAVE OFTEN 4035 02:34:11,800 --> 02:34:16,120 COME SUDDENLY UNEXPECTEDLY AND 4036 02:34:16,120 --> 02:34:17,640 FROM PLACES WE HAVEN'T PAID MUCH 4037 02:34:17,640 --> 02:34:20,040 ATTENTION TO AND WITH 4038 02:34:20,040 --> 02:34:20,760 UNANTICIPATED CONSEQUENCES AND 4039 02:34:20,760 --> 02:34:22,880 SO I DON'T HAVE TO REMIND THIS 4040 02:34:22,880 --> 02:34:25,640 AUDIENCE, FOR EXAMPLE, OF THINGS 4041 02:34:25,640 --> 02:34:27,600 LIKE THE INTERNET AND 4042 02:34:27,600 --> 02:34:30,400 SMARTPHONES AND RECENTLY ROLE OF 4043 02:34:30,400 --> 02:34:32,560 SOCIAL MEDIA IN MISS AND 4044 02:34:32,560 --> 02:34:32,960 DISINFORMATION. 4045 02:34:32,960 --> 02:34:35,240 NONE OF THAT WAS PLANNED FROM 4046 02:34:35,240 --> 02:34:38,360 OUR PERSPECTIVE. 4047 02:34:38,360 --> 02:34:40,400 NOT TO MENTION COVID. 4048 02:34:40,400 --> 02:34:42,680 SO, WHAT, WHEN AND FROM WHERE IS 4049 02:34:42,680 --> 02:34:45,040 NEXT QUITE POSSIBLE WILL I IS 4050 02:34:45,040 --> 02:34:46,120 SOMETHING COMPLETELY DIFFERENT 4051 02:34:46,120 --> 02:34:47,640 FROM ANYTHING WE ARE DISCUSSING 4052 02:34:47,640 --> 02:34:49,640 HERE TODAY AND WOULD ENCOURAGE 4053 02:34:49,640 --> 02:34:54,080 US TO HAVE ALSO A STRONG DOSE OF 4054 02:34:54,080 --> 02:34:54,360 HUMILITY. 4055 02:34:54,360 --> 02:34:54,760 THANK YOU. 4056 02:34:54,760 --> 02:34:57,160 >>FER FIBBING. THANK YOU SO 4057 02:34:57,160 --> 02:34:58,160 MUCH. APPRECIATE COMMENT ABOUT 4058 02:34:58,160 --> 02:35:00,400 DATA AND CONVERSATION WITH 4059 02:35:00,400 --> 02:35:02,200 PARTICULARLY SOCIAL MEDIA POSTS; 4060 02:35:02,200 --> 02:35:03,280 RIGHT? 4061 02:35:03,280 --> 02:35:04,520 AND RELIABILITY OF WHAT IS 4062 02:35:04,520 --> 02:35:06,200 POSTED ON SOCIAL MEDIA AND 4063 02:35:06,200 --> 02:35:09,800 MONICA ELUDED TO THIS EARLIER. 4064 02:35:09,800 --> 02:35:11,960 BUT THE MEDICAL DATA WE DIDN'T 4065 02:35:11,960 --> 02:35:16,040 HAVE CONVERSATIONS ABOUT EHR OR 4066 02:35:16,040 --> 02:35:17,840 ELECTRONIC MEDICAL RECORD DATA; 4067 02:35:17,840 --> 02:35:18,160 RIGHT? 4068 02:35:18,160 --> 02:35:20,320 HOW RELIABLE IS THE DATA AND WHO 4069 02:35:20,320 --> 02:35:24,440 IS THE POPULATION OF FOLKS IN 4070 02:35:24,440 --> 02:35:25,720 DATA? 4071 02:35:25,720 --> 02:35:28,960 VERY MUCH NOTED AND COMMENTS 4072 02:35:28,960 --> 02:35:30,360 ABOUT CHATGPT WE TALKED ABOUT 4073 02:35:30,360 --> 02:35:32,080 THIS BEFORE AND GIVEN 4074 02:35:32,080 --> 02:35:33,240 CONVERSATION WE HAD OCCURRED TO 4075 02:35:33,240 --> 02:35:37,480 ME WHAT WOULD PUBLIC ENGAGEMENT 4076 02:35:37,480 --> 02:35:39,680 HAVE LOOKED LIKE FOR CHATGPT AND 4077 02:35:39,680 --> 02:35:42,440 MICROSOFT IS SAYING THAT THIS 4078 02:35:42,440 --> 02:35:45,240 FIRST SORT OF FOR AN OF LETTING 4079 02:35:45,240 --> 02:35:49,240 BING SEARCH ENGINE GO OUT TO 4080 02:35:49,240 --> 02:35:54,920 1,000 OR SO SELECTED FOLKS WAS 4081 02:35:54,920 --> 02:35:57,880 AN EFFORT TESTING THE SOFTWARE 4082 02:35:57,880 --> 02:35:59,160 BEFORE LETTING IT OUT IN THE 4083 02:35:59,160 --> 02:36:02,480 WILD. IT HAS BEEN AN 4084 02:36:02,480 --> 02:36:05,040 INTERESTING EXPERIMENT AND GOING 4085 02:36:05,040 --> 02:36:08,000 BACK TO WHAT WE HEARD FROM THE 4086 02:36:08,000 --> 02:36:10,800 CONVERSATIONS AND THAT MONICA 4087 02:36:10,800 --> 02:36:14,560 AND HER COLLEAGUES RAN FOR US, I 4088 02:36:14,560 --> 02:36:16,040 MEAN, DID THOSE -- WHAT YOU READ 4089 02:36:16,040 --> 02:36:18,200 OF THOSE CONVERSATIONS, DID THEY 4090 02:36:18,200 --> 02:36:19,880 SORT OF RESONATE WITH WHAT YOU 4091 02:36:19,880 --> 02:36:21,680 HAVE HEARD FROM PARTICIPANTS IN 4092 02:36:21,680 --> 02:36:23,520 YOUR RESEARCH OR CONSUMERS 4093 02:36:23,520 --> 02:36:26,000 DURING YOUR TIME IN INDUSTRY OR 4094 02:36:26,000 --> 02:36:27,320 MEMBERS OF THE GOVERNMENT THAT 4095 02:36:27,320 --> 02:36:31,040 YOU INTERFACED WITH IN TALKING 4096 02:36:31,040 --> 02:36:34,960 ABOUT THESE KINDS OF 4097 02:36:34,960 --> 02:36:36,600 TECHNOLOGIES AND MAYBE WE WILL 4098 02:36:36,600 --> 02:36:40,800 GO TO MILDRED FIRST FOR THIS 4099 02:36:40,800 --> 02:36:41,120 ONE. 4100 02:36:41,120 --> 02:36:47,920 >>YEAH. I HAVE DONE A LOT OF 4101 02:36:47,920 --> 02:36:50,200 PATIENT HEALTH SYSTEMS ABOUT USE 4102 02:36:50,200 --> 02:36:52,160 OF DATA AND EVERYTHING THAT I 4103 02:36:52,160 --> 02:36:57,720 THINK WAS BROUGHT OUT IN THESE 4104 02:36:57,720 --> 02:36:58,040 SCENARIOS. 4105 02:36:58,040 --> 02:37:07,760 IT WAS VERY MUCH ECHOED THERE. 4106 02:37:07,760 --> 02:37:11,080 ONE THING THAT MADE ME THINK 4107 02:37:11,080 --> 02:37:13,920 ABOUT WAS HOW WE MIGHT AND MAYBE 4108 02:37:13,920 --> 02:37:16,320 THIS IS JUMPING AHEAD A LITTLE 4109 02:37:16,320 --> 02:37:18,880 BIT IN TERMS HOW TO INTEGRATE 4110 02:37:18,880 --> 02:37:22,240 THAT BACK; RIGHT? AND CREATING 4111 02:37:22,240 --> 02:37:24,520 A PROCESS WHERE IT GETS DIRECTLY 4112 02:37:24,520 --> 02:37:27,000 FED BACK INTO AS RUPA SAYS AND 4113 02:37:27,000 --> 02:37:28,080 JEN SAID IN THE FIRST PANEL 4114 02:37:28,080 --> 02:37:30,240 ABOUT HOW YOU GET THAT BACK INTO 4115 02:37:30,240 --> 02:37:33,000 THE DESIGN PROCESS VERY EARLY 4116 02:37:33,000 --> 02:37:33,200 ON. 4117 02:37:33,200 --> 02:37:36,440 I THINK THAT -- I ALSO HAVE DONE 4118 02:37:36,440 --> 02:37:40,800 FOCUS GROUPS WITH AI DEVELOPERS 4119 02:37:40,800 --> 02:37:43,160 USING OR WORKING IN THE HEALTH 4120 02:37:43,160 --> 02:37:46,240 CARE SPACE. THEY WOULD HAVE 4121 02:37:46,240 --> 02:37:48,440 VERY MUCH LIKED TO HEAR THESE 4122 02:37:48,440 --> 02:37:51,320 RESULTS AND THEY DON'T GET A 4123 02:37:51,320 --> 02:37:54,000 CHANCE TO DO THAT EVER. 4124 02:37:54,000 --> 02:37:55,320 NOT ONLY ARE THEY NOT FAMILIAR 4125 02:37:55,320 --> 02:37:57,720 WITH THINGS LIKE IRBS OR THAT 4126 02:37:57,720 --> 02:37:59,560 SORT OF THING BUT ALSO DON'T 4127 02:37:59,560 --> 02:38:02,840 HAVE A PERSPECTIVE FROM THE 4128 02:38:02,840 --> 02:38:04,720 PATIENT PERSPECTIVE OR THE -- 4129 02:38:04,720 --> 02:38:06,560 YOU KNOW, JUST THE GENERAL 4130 02:38:06,560 --> 02:38:08,360 PUBLIC'S PERSPECTIVE OF USERS 4131 02:38:08,360 --> 02:38:12,560 NOT LIKE THEMSELVES AND SO ONE 4132 02:38:12,560 --> 02:38:17,280 OF THE THINGS THAT I THINK THAT 4133 02:38:17,280 --> 02:38:19,760 WE DID HERE IN CONVERSATIONS WE 4134 02:38:19,760 --> 02:38:22,800 HAD WITH DEVELOPERS IS THAT 4135 02:38:22,800 --> 02:38:26,560 WHILE SOME MIGHT BE RECEPTIVE TO 4136 02:38:26,560 --> 02:38:30,120 SORT OF LEARNING MORE OTHERS ARE 4137 02:38:30,120 --> 02:38:32,480 NOT CERTAIN IT IS ACTUALLY THEIR 4138 02:38:32,480 --> 02:38:33,800 RESPONSIBILITY AND I THINK THAT 4139 02:38:33,800 --> 02:38:35,960 ONE OF THE THINGS THAT I WOULD 4140 02:38:35,960 --> 02:38:40,320 LIKE TO SEE IS TO SORT OF TRY TO 4141 02:38:40,320 --> 02:38:44,640 UNDERSTAND HOW TO FOSTER A SENSE 4142 02:38:44,640 --> 02:38:48,600 OF -- FOSTER CULTURE IN WHICH 4143 02:38:48,600 --> 02:38:50,760 PEOPLE ARE WILLING TO TAKE 4144 02:38:50,760 --> 02:38:54,440 RESULTS OF THESE COMMUNITY 4145 02:38:54,440 --> 02:38:57,000 ENGAGEMENTS AND USE IT TO SORT 4146 02:38:57,000 --> 02:38:58,160 OF PUT THEMSELVES IN THE PLACE 4147 02:38:58,160 --> 02:38:59,720 OF THOSE PEOPLE. 4148 02:38:59,720 --> 02:39:01,440 AND TO THINK ABOUT HOW THAT 4149 02:39:01,440 --> 02:39:04,680 MIGHT CHANGE HOW THEY ARE 4150 02:39:04,680 --> 02:39:07,320 THINKING ABOUT DESIGNS AND FOR 4151 02:39:07,320 --> 02:39:11,320 DATA COLLECTION AND DATA USE. 4152 02:39:11,320 --> 02:39:14,440 >>IT IS INTERESTING YOU ARE 4153 02:39:14,440 --> 02:39:15,320 SAYING THIS THING ABOUT 4154 02:39:15,320 --> 02:39:16,640 RESPONSIBILITY. IT IS NOT JUST 4155 02:39:16,640 --> 02:39:18,960 -- ONE ISSUE, AGAIN, THIS IDEA 4156 02:39:18,960 --> 02:39:21,360 OF TRUST IS BEING PART OF THE 4157 02:39:21,360 --> 02:39:23,320 PROCESS AND WE TALKED ABOUT THE 4158 02:39:23,320 --> 02:39:26,040 DESIGN COMPONENT AND ALSO, YOU 4159 02:39:26,040 --> 02:39:34,640 KNOW, WHEN IT COMES TO WHO IS 4160 02:39:34,640 --> 02:39:36,440 CREATING AI TECHNOLOGY, ET 4161 02:39:36,440 --> 02:39:40,440 CETERA, IF INDUSTRY, IT IS NOT 4162 02:39:40,440 --> 02:39:44,080 JUST RESPONSIBILITY BUT ALSO I 4163 02:39:44,080 --> 02:39:45,800 THINK PARTICIPANTS AND COMMUNITY 4164 02:39:45,800 --> 02:39:48,320 MEMBERS COME FROM IF YOU MAKE 4165 02:39:48,320 --> 02:39:51,840 MONEY OFF THIS WHERE IS TAKING 4166 02:39:51,840 --> 02:39:58,360 THE POT AND MY DATA YOU ARE 4167 02:39:58,360 --> 02:40:03,320 PROVE RITYINGING FROM IS NOT 4168 02:40:03,320 --> 02:40:10,960 JUST PIECE BUT MAKING THE 4169 02:40:10,960 --> 02:40:12,720 FINANCIAL BURDEN MAKING SURE 4170 02:40:12,720 --> 02:40:13,200 THERE IS APPROPRIATE 4171 02:40:13,200 --> 02:40:14,680 COMPENSATION THAT IS PART OF THE 4172 02:40:14,680 --> 02:40:18,440 TRUST EQUATION IS, YOU KNOW, IS 4173 02:40:18,440 --> 02:40:20,680 THE VISIBILITY AND THE 4174 02:40:20,680 --> 02:40:21,440 TRANSPARENCY OF I WILL TAKE THIS 4175 02:40:21,440 --> 02:40:23,320 INFORMATION FROM YOU. I WILL 4176 02:40:23,320 --> 02:40:25,200 MAKE A PRODUCT AND MAKE A LOT OF 4177 02:40:25,200 --> 02:40:26,000 MONEY OUT OF IT. 4178 02:40:26,000 --> 02:40:27,840 AND WHETHER OR NOT THAT IS -- 4179 02:40:27,840 --> 02:40:29,600 YOU KNOW, THAT IS SOMETHING THAT 4180 02:40:29,600 --> 02:40:31,720 IS SHARED UP FRONT. I THOUGHT 4181 02:40:31,720 --> 02:40:33,760 IT WAS TO ADD TO THAT 4182 02:40:33,760 --> 02:40:35,480 RESPONSIBILITY PIECE WE HAVE TO 4183 02:40:35,480 --> 02:40:37,720 INCLUDE THE MONETARY PIECE AS 4184 02:40:37,720 --> 02:40:39,120 WELL THAT IS IMPORTANT TO 4185 02:40:39,120 --> 02:40:40,320 COMMUNITY MEMBERS. 4186 02:40:40,320 --> 02:40:42,440 >>I THINK THAT WAY THAT LOTS 4187 02:40:42,440 --> 02:40:43,480 INSTITUTIONS HAVE RESPONDED TO 4188 02:40:43,480 --> 02:40:45,400 THAT IS TO ADD A LINE TO THE 4189 02:40:45,400 --> 02:40:46,720 CONSENT FORM THAT IS SAYING THIS 4190 02:40:46,720 --> 02:40:48,800 MIGHT BE USED TO MAKE A 4191 02:40:48,800 --> 02:40:50,400 COMMERCIAL PRODUCT. YOU WON'T 4192 02:40:50,400 --> 02:40:52,320 SEE ANY BENEFIT OR WILL NOT SEE 4193 02:40:52,320 --> 02:40:54,440 MONEY FROM THAT. 4194 02:40:54,440 --> 02:40:56,200 I THINK THAT YOUR COMMENTS BRING 4195 02:40:56,200 --> 02:40:58,440 UP -- FIRST OF ALL, TO THE 4196 02:40:58,440 --> 02:40:59,360 DEVELOPERS, RIGHT? 4197 02:40:59,360 --> 02:41:02,240 ETHICS WILL BE BAKED IN. THE 4198 02:41:02,240 --> 02:41:03,840 QUESTION IS WHETHER IT IS 4199 02:41:03,840 --> 02:41:06,080 EXPLICIT OR NOT; RIGHT? 4200 02:41:06,080 --> 02:41:08,240 AND WHOSE ETHICAL PRINCIPLES IT 4201 02:41:08,240 --> 02:41:11,600 IS. WE ARE ALSO AS THE FIRST 4202 02:41:11,600 --> 02:41:13,760 PANEL WAS WRESTLING WITH SORT OF 4203 02:41:13,760 --> 02:41:16,760 STRUCTURAL ISSUES AND AS I THINK 4204 02:41:16,760 --> 02:41:19,080 JEN SAID, WE HAVE TO HAVE -- WE 4205 02:41:19,080 --> 02:41:22,480 HAVE TO RETHINK THIS PROCESS IF 4206 02:41:22,480 --> 02:41:25,040 WE ARE GOING TO RESPOND TO KINDS 4207 02:41:25,040 --> 02:41:28,760 OF ENGAGEMENTS IN WAYS THAT 4208 02:41:28,760 --> 02:41:30,440 FACILITATES THE BUILDING OF 4209 02:41:30,440 --> 02:41:33,160 LONGITUDINAL RELATIONSHIPS. 4210 02:41:33,160 --> 02:41:35,320 AND THAT DOESN'T -- THAT PUTS 4211 02:41:35,320 --> 02:41:37,520 ENGAGEMENT FIRST IF IN THE 4212 02:41:37,520 --> 02:41:39,560 PROCESS AS OPPOSED TO LAST IN 4213 02:41:39,560 --> 02:41:40,680 THE PROCESS. 4214 02:41:40,680 --> 02:41:41,000 RIGHT? 4215 02:41:41,000 --> 02:41:43,800 IT IS NOT THE WAY WHICH WE 4216 02:41:43,800 --> 02:41:45,600 GENERALLY DO SCIENCE. LISA, I 4217 02:41:45,600 --> 02:41:47,680 THINK YOU WANTED TO -- 4218 02:41:47,680 --> 02:41:54,440 >>YES. A FEW REFLECTIONS OR 4219 02:41:54,440 --> 02:42:00,720 COMME 4220 02:42:00,720 --> 02:42:01,720 COMMENTS. 4221 02:42:01,720 --> 02:42:04,080 THINKING ABOUT CONCEPT OF 4222 02:42:04,080 --> 02:42:05,360 RESPONSIBILITY AND THINKING OF 4223 02:42:05,360 --> 02:42:07,360 TECHNOLOGY AND STEPS GETTING TO 4224 02:42:07,360 --> 02:42:11,320 OUTPUT OF ALGORITHM THAT WILL 4225 02:42:11,320 --> 02:42:14,600 BENEFIT PATIENTS IN TERMS OF 4226 02:42:14,600 --> 02:42:16,240 EARLY DIAGNOSIS DECISION MAKING 4227 02:42:16,240 --> 02:42:18,440 AND WHICH THERAPY IS BET FOR 4228 02:42:18,440 --> 02:42:20,000 THAT PARTICULAR PATIENT AND 4229 02:42:20,000 --> 02:42:21,400 IDENTIFYING DISEASES EARLY SO 4230 02:42:21,400 --> 02:42:23,280 THAT THEY CAN BE ACTED ON AND 4231 02:42:23,280 --> 02:42:26,960 ALL THOSE OR TREMENDOUS -- THERE 4232 02:42:26,960 --> 02:42:37,520 IS NO QUESTION THAT IN MY MIND 4233 02:42:38,040 --> 02:42:41,200 AI IS HERE. THERE WILL BE 4234 02:42:41,200 --> 02:42:42,440 TREMENDOUS BENEFIT AND 4235 02:42:42,440 --> 02:42:43,600 TRANSFORMATION IN HEALTH CARE AS 4236 02:42:43,600 --> 02:42:46,000 A RESULT OF AI. I THINK THAT 4237 02:42:46,000 --> 02:42:48,800 SCIENCE HAS GOTTEN AHEAD OR 4238 02:42:48,800 --> 02:42:50,680 TECHNOLOGY HAS GOTTEN AHEAD OF 4239 02:42:50,680 --> 02:42:53,880 ETHICS IT THAT IS IMPORTANT TO 4240 02:42:53,880 --> 02:42:59,280 UNDERSTAND HOW TECHNOLOGY WORKS 4241 02:42:59,280 --> 02:43:01,280 AND ANSWERING QUESTION WHO IS 4242 02:43:01,280 --> 02:43:03,680 RESPONSIBLE AND WHAT ARE 4243 02:43:03,680 --> 02:43:04,280 DIFFERENT TYPES OF 4244 02:43:04,280 --> 02:43:05,400 RESPONSIBILITY AT DIFFERENT 4245 02:43:05,400 --> 02:43:06,720 POINTS IN DEVELOPMENT AND 4246 02:43:06,720 --> 02:43:09,400 MEANING BY THAT AND TAKING FOR 4247 02:43:09,400 --> 02:43:12,880 EXAMPLE WHAT LARGE INDUSTRY OR 4248 02:43:12,880 --> 02:43:15,200 LARGE TECH COMPANIES ARE DOING 4249 02:43:15,200 --> 02:43:17,760 IN SPACE OF AI AND IN MANY CASES 4250 02:43:17,760 --> 02:43:20,000 THEY DEVELOP PLATFORMS AND TOOLS 4251 02:43:20,000 --> 02:43:23,320 AND INFRASTRUCTURE THAT IS FOR 4252 02:43:23,320 --> 02:43:25,640 HEALTH CARE SYSTEMS IF WE STICK 4253 02:43:25,640 --> 02:43:28,360 TO THE HEALTH CARE SPACE AND 4254 02:43:28,360 --> 02:43:29,720 HEALTH CARE SYSTEMS TO TRAIN 4255 02:43:29,720 --> 02:43:35,360 THEIR OWN DATA ON THAT 4256 02:43:35,360 --> 02:43:37,200 TECHNOLOGY LEVERAGING INSIGHTS 4257 02:43:37,200 --> 02:43:38,760 FOR PARTICULAR POPULATIONS AND 4258 02:43:38,760 --> 02:43:41,040 IN MANY WAYS THOSE TECH 4259 02:43:41,040 --> 02:43:43,720 COMPANIES FEEL THEY ARE SOMEWHAT 4260 02:43:43,720 --> 02:43:44,960 REMOVED FROM THE DIRECT 4261 02:43:44,960 --> 02:43:46,000 RESPONSIBILITY TO PATIENTS. 4262 02:43:46,000 --> 02:43:50,120 THEY ARE PROVIDING A PLATFORM 4263 02:43:50,120 --> 02:43:53,920 THAT IS ESSENTIAL FOR ESSENTIAL 4264 02:43:53,920 --> 02:43:56,520 TRAINING DATA TO BE USED TO 4265 02:43:56,520 --> 02:43:58,120 DEVELOP ALGORITHMS THAT WILL BE 4266 02:43:58,120 --> 02:44:01,400 SPECIFIC TO A PARTICULAR PATIENT 4267 02:44:01,400 --> 02:44:03,920 POPULATION AND THINK THIS IS 4268 02:44:03,920 --> 02:44:05,200 ACTUALLY A FAIRLY COMPLEX 4269 02:44:05,200 --> 02:44:06,680 QUESTION WHAT IS THE 4270 02:44:06,680 --> 02:44:09,680 RESPONSIBILITY AT DIFFERENT 4271 02:44:09,680 --> 02:44:10,880 LEVELS; RIGHT? 4272 02:44:10,880 --> 02:44:13,200 THERE IS A CONCEPT OF AUTO 4273 02:44:13,200 --> 02:44:14,160 MACHINE LEARNING BECAUSE YOU 4274 02:44:14,160 --> 02:44:16,600 HAVE A PLATFORM THAT IS VERY 4275 02:44:16,600 --> 02:44:19,280 DIFFERENT TO HEALTH CARE SYSTEM 4276 02:44:19,280 --> 02:44:21,800 INTEGRATING DATA FOR PARTICULAR 4277 02:44:21,800 --> 02:44:23,080 PATIENT EXPLANATION AND HAVING 4278 02:44:23,080 --> 02:44:24,520 OUTPUT FOR THAT POPULATION AND 4279 02:44:24,520 --> 02:44:26,800 THAT IS ONE COMMENT THAT I THINK 4280 02:44:26,800 --> 02:44:30,000 IS -- POINTS TO COMPLEXITY HERE. 4281 02:44:30,000 --> 02:44:31,320 SECOND COMMENT HERE I WANT TO 4282 02:44:31,320 --> 02:44:33,840 MAKE IS RELATE TODAY MONICA AND 4283 02:44:33,840 --> 02:44:36,440 WHAT YOU SAY ABOUT PAYMENT AND 4284 02:44:36,440 --> 02:44:40,160 MONETARY COMPONENT OF IT. 4285 02:44:40,160 --> 02:44:44,480 I FIND THAT INTERESTING TALKING 4286 02:44:44,480 --> 02:44:55,000 ABOUT DEVELOP IING. 4287 02:45:17,200 --> 02:45:23,440 >>THEY HAVE STAKE IN IT AND 4288 02:45:23,440 --> 02:45:25,080 USING THEIR DATA. NOT SURE THAT 4289 02:45:25,080 --> 02:45:26,520 IS THE SOLUTION AND IT BECOMES 4290 02:45:26,520 --> 02:45:31,200 HA RD TO OPERATIONALIZE THAT. I 4291 02:45:31,200 --> 02:45:41,640 WONDER ABOUT THE ABILITY. ARE 4292 02:45:41,640 --> 02:45:51,880 WE MISSING. 4293 02:45:52,320 --> 02:45:53,800 THERE IS A BALANCING ACT HERE. 4294 02:45:53,800 --> 02:45:56,040 IT IS NOT CLEAR TO ME. WE HAVE 4295 02:45:56,040 --> 02:45:58,200 TO HAVE A SOCIETAL CONVERSATION 4296 02:45:58,200 --> 02:46:00,120 ABOUT THIS. AND UNDERSTAND 4297 02:46:00,120 --> 02:46:01,760 PEOPLE'S PERSPECTIVES. 4298 02:46:01,760 --> 02:46:03,080 SOMETIMES WHEN YOU HAVE A 4299 02:46:03,080 --> 02:46:05,600 COMMERCIAL PRODUCT, THERE IS 4300 02:46:05,600 --> 02:46:07,600 ACTUALLY -- MAY BE GREATER 4301 02:46:07,600 --> 02:46:10,240 INVESTMENT TO SUSTAIN PRODUCT 4302 02:46:10,240 --> 02:46:12,600 AND IMPROVE THAT PRODUCT AND 4303 02:46:12,600 --> 02:46:17,080 REALIZE BENEFITS OF PRODUCT FOR 4304 02:46:17,080 --> 02:46:18,080 PEOPLE. 4305 02:46:18,080 --> 02:46:19,880 IT IS NOT SO CLEAR COMMERCIAL 4306 02:46:19,880 --> 02:46:21,280 PRODUCT IS ALWAYS AT ODDS WITH 4307 02:46:21,280 --> 02:46:23,960 BEST INTEREST OF THE POPULATION. 4308 02:46:23,960 --> 02:46:26,320 >>NOT SO CLEAR IS PART OF THE 4309 02:46:26,320 --> 02:46:28,880 TRANSPARENCY; RIGHT? 4310 02:46:28,880 --> 02:46:29,680 IF PUBLIC DOESN'T UNDERSTAND 4311 02:46:29,680 --> 02:46:32,160 WHAT IT TAKES TO SUPPORT AND 4312 02:46:32,160 --> 02:46:34,880 SUSTAIN A PRODUCT FOR PUBLIC 4313 02:46:34,880 --> 02:46:36,480 BENEFIT, THAT IS PART OF THE 4314 02:46:36,480 --> 02:46:39,160 PROBLEM IS THAT THERE IS NO 4315 02:46:39,160 --> 02:46:42,280 UNDERSTANDING ON THAT PIECE. I 4316 02:46:42,280 --> 02:46:43,920 THINK THAT PARTICIPANTS REALLY 4317 02:46:43,920 --> 02:46:46,240 HAD -- YOU KNOW, IT WAS A VERY 4318 02:46:46,240 --> 02:46:47,640 EDUCATED CONVERSATION IN SENSE 4319 02:46:47,640 --> 02:46:49,120 THERE WAS A REAL INTEREST IN 4320 02:46:49,120 --> 02:46:51,360 UNDERSTANDING THAT, YOU KNOW, 4321 02:46:51,360 --> 02:46:53,040 DIFFERENT COMPONENTS GOING INTO 4322 02:46:53,040 --> 02:46:54,880 AI. IT WASN'T JUST, YOU KNOW, I 4323 02:46:54,880 --> 02:46:56,800 THINK THEY WANTED TO UNDERSTAND 4324 02:46:56,800 --> 02:46:59,080 SAMPLE SIZE AND DEMOGRAPHICS AND 4325 02:46:59,080 --> 02:47:00,480 THERE WERE VERY SPECIFIC THINGS 4326 02:47:00,480 --> 02:47:02,720 THEY ASKED FOR AND FOR CERTAIN 4327 02:47:02,720 --> 02:47:04,800 POPULATIONS, YOU KNOW, I THINK 4328 02:47:04,800 --> 02:47:06,400 THAT WHO OUR -- MAYBE BECAUSE OF 4329 02:47:06,400 --> 02:47:08,520 SITUATIONS THEY ARE ALREADY IN 4330 02:47:08,520 --> 02:47:11,360 AND THEY ARE ENGAGEMENT RESEARCH 4331 02:47:11,360 --> 02:47:13,120 BECAUSE OF -- YOU KNOW, PERSONAL 4332 02:47:13,120 --> 02:47:15,360 -- FOR PERSONAL REASONS THEY ARE 4333 02:47:15,360 --> 02:47:16,920 ALREADY ENGAGED IN LOTS OF 4334 02:47:16,920 --> 02:47:18,280 RESEARCH AND THOSE POPULATIONS 4335 02:47:18,280 --> 02:47:20,320 THAT ARE SPECIFICALLY, YOU KNOW, 4336 02:47:20,320 --> 02:47:22,680 THEY ARE JUST WANTING -- YOU 4337 02:47:22,680 --> 02:47:25,200 KNOW, GRASPING AT WHATEVER THEY 4338 02:47:25,200 --> 02:47:26,720 CAN. THEY ARE IN A PLACE WHERE 4339 02:47:26,720 --> 02:47:28,520 THEY ARE CONSTANTLY GIVING AND 4340 02:47:28,520 --> 02:47:30,560 GIVING AND GIVING TO THAT COMMON 4341 02:47:30,560 --> 02:47:32,520 GOOD IDEA AND MOST PEOPLE DOING 4342 02:47:32,520 --> 02:47:34,920 RESEARCH ARE NOT DOING IT FOR 4343 02:47:34,920 --> 02:47:38,160 $25 INCENTIVE BUT DOING IT FOR 4344 02:47:38,160 --> 02:47:40,240 GREATER GOOD ALREADY AND HIGHER 4345 02:47:40,240 --> 02:47:41,560 VALUE SET THERE ALREADY TO BEGIN 4346 02:47:41,560 --> 02:47:41,760 WITH. 4347 02:47:41,760 --> 02:47:44,160 >>I WANTED TO ADD YOU TEED ME 4348 02:47:44,160 --> 02:47:47,360 UP THANKS VERY MUCH THAT 4349 02:47:47,360 --> 02:47:49,000 COMMENTS BENEFIT SOME OF US MORE 4350 02:47:49,000 --> 02:47:52,440 THAN OTHERS AND BEING REALLY 4351 02:47:52,440 --> 02:47:57,560 CLEAR ABOUT THAT AND DEVELOPING 4352 02:47:57,560 --> 02:48:00,960 STRUCTURES THAT REBALANCE; 4353 02:48:00,960 --> 02:48:02,000 RIGHT? 4354 02:48:02,000 --> 02:48:03,720 THE EXISTING BARRIERS IT THAT WE 4355 02:48:03,720 --> 02:48:05,760 KNOW THAT WE HAVE IN THIS 4356 02:48:05,760 --> 02:48:06,320 COUNTRY. 4357 02:48:06,320 --> 02:48:08,120 >>ABSOLUTELY. I THINK THAT 4358 02:48:08,120 --> 02:48:09,920 THIS POINTS TO THE IDEA THAT 4359 02:48:09,920 --> 02:48:12,200 THERE IS A WHOLE POPULATION OF 4360 02:48:12,200 --> 02:48:15,360 PATIENTS THAT I CALL 4361 02:48:15,360 --> 02:48:16,600 ALGORITHMICALLY UNDERSERVED THAT 4362 02:48:16,600 --> 02:48:18,160 NEED OUR ATTENTION. 4363 02:48:18,160 --> 02:48:20,200 I'M DEEPLY WORRIED ABOUT SMALLER 4364 02:48:20,200 --> 02:48:22,720 HEALTH CARE SYSTEMS IT THAT 4365 02:48:22,720 --> 02:48:26,040 DON'T HAVE THE INFRASTRUCTURE TO 4366 02:48:26,040 --> 02:48:27,960 DEVELOP THE -- TO DEVELOP AI AND 4367 02:48:27,960 --> 02:48:31,120 MACHINE LEARNING FOR BENEFIT OF 4368 02:48:31,120 --> 02:48:33,960 PATIENTS AND WHEREAS PLACES LIKE 4369 02:48:33,960 --> 02:48:37,040 HARVARD AND STANFORD AND DUKE 4370 02:48:37,040 --> 02:48:40,920 AND HOPKINS AND POWERED ACADEMIC 4371 02:48:40,920 --> 02:48:44,000 TERTIARY CENTERS MAYO IS AT THE 4372 02:48:44,000 --> 02:48:45,760 FOREFRONT OF LOTS OF THIS HAVE 4373 02:48:45,760 --> 02:48:47,160 BEEN ABLE TO DEVELOP 4374 02:48:47,160 --> 02:48:48,200 INFRASTRUCTURE FOR MACHINE 4375 02:48:48,200 --> 02:48:52,200 LEARNING AND AI TO BRING THE 4376 02:48:52,200 --> 02:48:54,280 TECHNOLOGY AND BENEFITS OF THE 4377 02:48:54,280 --> 02:48:57,760 TECHNOLOGY TO THEIR PATIENT 4378 02:48:57,760 --> 02:48:58,240 POPULATION. WE HAVE A 4379 02:48:58,240 --> 02:48:58,880 RESPONSIBILITY TO THINK ABOUT 4380 02:48:58,880 --> 02:49:03,840 NOT ONLY DATA POVERTY ISSUES 4381 02:49:03,840 --> 02:49:08,640 AMONGST SOCIO DEM GRAPHICALLY 4382 02:49:08,640 --> 02:49:11,120 AND RACIALLY ETHNIC POPULATIONS 4383 02:49:11,120 --> 02:49:12,640 THAT MIGHT BE RELUCTANT TO SHARE 4384 02:49:12,640 --> 02:49:15,680 THEIR DATA FOR VERY GOOD REASONS 4385 02:49:15,680 --> 02:49:17,680 BECAUSE OF HISTORICAL FACTS AND 4386 02:49:17,680 --> 02:49:21,160 HOW WE WILL PROVIDE SOME 4387 02:49:21,160 --> 02:49:22,240 INFRASTRUCTURE FOR THESE OTHER, 4388 02:49:22,240 --> 02:49:24,600 YOU KNOW, POPULATIONS AND HEALTH 4389 02:49:24,600 --> 02:49:27,920 CARE SYSTEMS AND PATIENTS IN 4390 02:49:27,920 --> 02:49:28,800 SYSTEMS. YEAH? 4391 02:49:28,800 --> 02:49:30,800 >>BEFORE WE GET OFF TOPIC OF 4392 02:49:30,800 --> 02:49:32,880 FINANCIAL INCENTIVES I WANT TO 4393 02:49:32,880 --> 02:49:37,840 ADD ONE COMMENT. I THINK THAT, 4394 02:49:37,840 --> 02:49:38,960 MONICA AS I THINK ABOUT THIS 4395 02:49:38,960 --> 02:49:40,880 THAT IS ONE PART OF SOMETHING 4396 02:49:40,880 --> 02:49:42,480 BIGGER THAT IS INTELLECTUAL 4397 02:49:42,480 --> 02:49:46,520 PROPERTY AND HOW IT IS HANDLED 4398 02:49:46,520 --> 02:49:49,040 THROUGHOUT THE INDUSTRY. 4399 02:49:49,040 --> 02:49:54,480 I WOULD ARGUE THINKING ABOUT 4400 02:49:54,480 --> 02:49:55,200 WHOSE INTELLECTUAL PROPERTY IT 4401 02:49:55,200 --> 02:49:59,360 IS AND WHO HAS A CLAIM ON THAT, 4402 02:49:59,360 --> 02:50:03,360 THAT WILL DIRECT FINANCES 4403 02:50:03,360 --> 02:50:05,320 FOLLOWING THAT AND THINKING OF A 4404 02:50:05,320 --> 02:50:07,680 FUTURE STATE AND THINKING AHEAD 4405 02:50:07,680 --> 02:50:10,080 ABOUT WHAT EXISTED TODAY AND 4406 02:50:10,080 --> 02:50:11,360 RECENTLY AND THESE TECHNOLOGIES 4407 02:50:11,360 --> 02:50:14,240 THAT ARE NOT GOING TO BE 4408 02:50:14,240 --> 02:50:17,840 ANALYTICS OPERATING ON DATA WE 4409 02:50:17,840 --> 02:50:18,920 HAVE TODAY. 4410 02:50:18,920 --> 02:50:21,680 AI TECHNOLOGIES WILL DEVELOP NEW 4411 02:50:21,680 --> 02:50:22,920 ANALYTICS AND THEY WILL WRITE 4412 02:50:22,920 --> 02:50:24,440 CODE FOR THE FUTURE. 4413 02:50:24,440 --> 02:50:27,360 I WILL SAY THAT AGAIN. AI WILL 4414 02:50:27,360 --> 02:50:30,480 ACTUALLY WRITE THE ALGORITHMS OF 4415 02:50:30,480 --> 02:50:33,120 THE FUTURE NOT OTHER WAY AROUND. 4416 02:50:33,120 --> 02:50:33,760 THAT CHANGES EVERYTHING. 4417 02:50:33,760 --> 02:50:38,760 WHOEVER IS RUNNING THAT AI 4418 02:50:38,760 --> 02:50:39,600 COMPONENT ON THAT PARTICULAR 4419 02:50:39,600 --> 02:50:42,480 PROBLEM IS GOING TO WANT TO LAY 4420 02:50:42,480 --> 02:50:46,640 CLAIM TO WHAT THE COMPUTER 4421 02:50:46,640 --> 02:50:49,320 CREATED AS BEING THEIRS AND 4422 02:50:49,320 --> 02:50:51,280 BATTLES OVER INTELLECTUAL 4423 02:50:51,280 --> 02:50:54,480 PROPERTY OVER FUTURE WORLD AND 4424 02:50:54,480 --> 02:50:56,880 DATA THAT IT SUPPLIES COMES FROM 4425 02:50:56,880 --> 02:51:00,040 EVERYWHERE SOMETIMES ARE NOT 4426 02:51:00,040 --> 02:51:03,280 EVEN KNOWING IT TALKING ABOUT 4427 02:51:03,280 --> 02:51:04,760 CHATGPT A MOMENT AGO GOING 4428 02:51:04,760 --> 02:51:06,560 ONLINE AND GOING TO WEBSITE THAT 4429 02:51:06,560 --> 02:51:08,120 LET'S YOU PLAY AND DO WORD GAMES 4430 02:51:08,120 --> 02:51:15,320 IT THAT PEOPLE ARE DOING NOW AND 4431 02:51:15,320 --> 02:51:17,320 THOUSANDS OF INDIVIDUALS HAVE 4432 02:51:17,320 --> 02:51:19,360 BEEN CROWDSOURCED IN COUPLE 4433 02:51:19,360 --> 02:51:22,280 MONTHS ASKING QUESTIONS GETTING 4434 02:51:22,280 --> 02:51:23,480 IT TO WRITE TEXT IN RESPONSE AND 4435 02:51:23,480 --> 02:51:25,080 WHAT IS HAPPENING IN BACKGROUND 4436 02:51:25,080 --> 02:51:31,320 IS ALL DATA YOU THAT YOU HAVE 4437 02:51:31,320 --> 02:51:32,720 CONTRIBUTING TO THE QUESTION AS 4438 02:51:32,720 --> 02:51:36,720 BEING SUCKED UP AND VACUUMED UP 4439 02:51:36,720 --> 02:51:37,760 AS IT GOES THROUGH THAT EXERCISE 4440 02:51:37,760 --> 02:51:39,400 AND IT THAT IS HAPPENING AT 4441 02:51:39,400 --> 02:51:41,200 SCALE ACROSS THE ENTIRE WORLD 4442 02:51:41,200 --> 02:51:43,200 AND MANL WHAT IT IS DOING FOR 4443 02:51:43,200 --> 02:51:45,440 DATA RESOURCES AVAILABLE TO THE 4444 02:51:45,440 --> 02:51:48,840 ONE THING RIGHT NOW IN 4445 02:51:48,840 --> 02:51:49,520 REAL-TIME. 4446 02:51:49,520 --> 02:51:53,400 BY THE WAY, IT IS NOT JUST 4447 02:51:53,400 --> 02:51:55,360 MICROSOFT BUT GOOGLE IS 4448 02:51:55,360 --> 02:51:56,160 EXPERIMENTING DEVELOPING THEIR 4449 02:51:56,160 --> 02:51:59,120 OWN TECHNOLOGY AND THERE ARE 4450 02:51:59,120 --> 02:52:01,320 PROBABLY TENS IF NOT MORE 4451 02:52:01,320 --> 02:52:03,360 START-UPS ACROSS THE GLOBE ALSO 4452 02:52:03,360 --> 02:52:06,480 USING SIMILAR TECHNOLOGY TO 4453 02:52:06,480 --> 02:52:11,240 DEVISE THEIR OWN APPROACHES TO 4454 02:52:11,240 --> 02:52:13,800 DOING THIS KIND OF AI FROM THE 4455 02:52:13,800 --> 02:52:16,160 FUTURE AND SOME WE WOULD APPLAUD 4456 02:52:16,160 --> 02:52:18,000 AND CONGRATULATE AND SUPPORT AND 4457 02:52:18,000 --> 02:52:20,200 WANT TO SEE SUCCESSFUL AND SOME 4458 02:52:20,200 --> 02:52:22,880 IN SOME PLACES WE WOULD BE MORE 4459 02:52:22,880 --> 02:52:24,840 CONCERNED ABOUT OUR OWN SECURITY 4460 02:52:24,840 --> 02:52:25,120 INTERESTS. 4461 02:52:25,120 --> 02:52:34,280 THIS IS A COMPLICATED SPACE THAT 4462 02:52:34,280 --> 02:52:39,200 BEARS WATCHING AND TALKING ABOUT 4463 02:52:39,200 --> 02:52:41,360 MACHINE LEARNING THERE IS DATA 4464 02:52:41,360 --> 02:52:45,280 USED TO TRAIN NEW ALGORITHM AND 4465 02:52:45,280 --> 02:52:47,360 THAT IS USED TO GET RESULTS THAT 4466 02:52:47,360 --> 02:52:49,120 YOU ARE LOOKING FOR HAD AND HOW 4467 02:52:49,120 --> 02:52:51,200 IT IS CLASSICALLY DONE AND MORE 4468 02:52:51,200 --> 02:52:53,440 AND MORE DATA COMES IN OVER TIME 4469 02:52:53,440 --> 02:52:55,440 AND GETS COLLECTED AT SCALE THAT 4470 02:52:55,440 --> 02:52:57,480 IS GOING ON RIGHT NOW WILL 4471 02:52:57,480 --> 02:52:59,440 CHANGE. TRAINING DATA MIGHT NOT 4472 02:52:59,440 --> 02:53:02,000 BE RELEVANT TO BIGGER DATA SET. 4473 02:53:02,000 --> 02:53:04,000 IT MAY NEED TO BE RETRAINED. WE 4474 02:53:04,000 --> 02:53:09,440 WILL SEE LOTS OF ALGORITHMS GET 4475 02:53:09,440 --> 02:53:12,480 UPDATED, REVISED AND CHANGED 4476 02:53:12,480 --> 02:53:14,920 OVERTIME BASED ON DATA 4477 02:53:14,920 --> 02:53:16,800 ACCUMULATED EVERY SECOND OF 4478 02:53:16,800 --> 02:53:17,400 EVERY DAY. 4479 02:53:17,400 --> 02:53:20,600 >>I APPRECIATE THE COMMENT 4480 02:53:20,600 --> 02:53:24,480 ABOUT HOW THERE IS-WHAT IS 4481 02:53:24,480 --> 02:53:27,320 HAPPENING NOW. 4482 02:53:27,320 --> 02:53:29,080 PUTTING IT IN ONE FRAME IN 4483 02:53:29,080 --> 02:53:31,040 GENERAL PART OF THE TRUST PIECE 4484 02:53:31,040 --> 02:53:34,240 IS PEOPLE DON'T KNOW WHAT THEY 4485 02:53:34,240 --> 02:53:37,080 DON'T KNOW. 4486 02:53:37,080 --> 02:53:38,920 HEALTH CARE SPACE IS SPACE THAT 4487 02:53:38,920 --> 02:53:40,960 PATIENT GOES THAT IS GUIDED BY 4488 02:53:40,960 --> 02:53:43,520 HEALTHCARE PROVIDER IT HAS THE 4489 02:53:43,520 --> 02:53:45,600 RELATIONSHIP AT FUNDAMENTAL 4490 02:53:45,600 --> 02:53:47,320 PIECE IS A VULNERABLE PLACE THAT 4491 02:53:47,320 --> 02:53:49,360 YOU ARE COMING AND HELPING THIS 4492 02:53:49,360 --> 02:53:50,760 PERSON IN YEARS OF EDUCATION AND 4493 02:53:50,760 --> 02:53:52,400 KNOWLEDGE THAT IS GOING TO GIVE 4494 02:53:52,400 --> 02:53:53,280 YOU SOLUTIONS. 4495 02:53:53,280 --> 02:53:55,360 SO, I THINK THAT WE HAVE TO 4496 02:53:55,360 --> 02:53:57,160 APPROACH ALL THIS PIECE OF 4497 02:53:57,160 --> 02:53:58,640 RESEARCH THAT IS WITH THAT SAME 4498 02:53:58,640 --> 02:54:01,280 UNDERSTANDING IT THAT PEOPLE ARE 4499 02:54:01,280 --> 02:54:03,120 EXPECTING AND WHAT MAYBE 4500 02:54:03,120 --> 02:54:04,280 SUBCONSCIOUSLY EVEN THAT IS FOR 4501 02:54:04,280 --> 02:54:06,040 THAT TYPE OF GUIDANCE AND I 4502 02:54:06,040 --> 02:54:07,880 DON'T KNOW WHAT QUESTION TO ASK 4503 02:54:07,880 --> 02:54:10,360 YOU TO PROTECT MY FUTURE 4504 02:54:10,360 --> 02:54:10,920 INTERESTS; RIGHT? 4505 02:54:10,920 --> 02:54:13,760 I THINK THAT IS A LOT OF WHERE 4506 02:54:13,760 --> 02:54:15,920 YOU SEE THESE VERY REACTIVE 4507 02:54:15,920 --> 02:54:17,640 RESPONSES TO CERTAIN ASPECTS OF 4508 02:54:17,640 --> 02:54:22,000 THE CASE STUDIES AND, YOU KNOW, 4509 02:54:22,000 --> 02:54:24,160 IN DATA THAT WE COLLECTED THAT 4510 02:54:24,160 --> 02:54:25,320 COMES DOWN TO THAT AND THEY 4511 02:54:25,320 --> 02:54:26,920 DON'T KNOW WHAT THEY DON'T KNOW 4512 02:54:26,920 --> 02:54:28,600 AND WHAT TO ASK AND WHAT YOU ARE 4513 02:54:28,600 --> 02:54:32,160 SHARING WOULD BE VERY NEW AND IN 4514 02:54:32,160 --> 02:54:39,360 THAT RESPECT THAT IS HERE AND 4515 02:54:39,360 --> 02:54:42,880 FRIGHTENING TO SOME FOLKS. 4516 02:54:42,880 --> 02:54:44,640 >>THAT IS IMPORTANT TO THINK 4517 02:54:44,640 --> 02:54:47,760 ABOUT HOW TO INTEGRATE THAT 4518 02:54:47,760 --> 02:54:49,480 CONVERSATION THAT YOU HAD AND 4519 02:54:49,480 --> 02:54:51,000 PICHLUS HAS WITH COMMUNITY 4520 02:54:51,000 --> 02:54:52,880 MEMBERS THAT ARE WITH SORTS OF 4521 02:54:52,880 --> 02:54:58,280 THINGS THAT JAY IS TALKING AB 4522 02:54:58,280 --> 02:54:58,520 ABOUT. 4523 02:54:58,520 --> 02:55:00,480 THAT HOLDS TRUE FOR MACHINE 4524 02:55:00,480 --> 02:55:01,480 LEARNING DEVELOPERS AND THEY 4525 02:55:01,480 --> 02:55:03,200 DON'T KNOW WHAT THEY DON'T KNOW; 4526 02:55:03,200 --> 02:55:04,240 RIGHT? 4527 02:55:04,240 --> 02:55:05,600 YOU HAVE DIFFERENT GROUPS THAT 4528 02:55:05,600 --> 02:55:06,760 DON'T KNOW WHAT THEY DON'T KNOW 4529 02:55:06,760 --> 02:55:09,640 AND FOR EXAMPLE THEY TALK ABOUT 4530 02:55:09,640 --> 02:55:11,360 DATA SHARING AND MACHINE 4531 02:55:11,360 --> 02:55:13,920 LEARNING DEVELOPERS HAVE -- AI 4532 02:55:13,920 --> 02:55:15,080 DEVELOPERS HAVE THEIR OWN PET 4533 02:55:15,080 --> 02:55:17,440 PEEVES ABOUT DATA SHARING AND 4534 02:55:17,440 --> 02:55:18,880 NOBODY SHARES DATA AND I DON'T 4535 02:55:18,880 --> 02:55:21,680 THINK THAT MOST PATIENTS OR 4536 02:55:21,680 --> 02:55:23,320 PUBLIC KNOWS THAT THEIR HEALTH 4537 02:55:23,320 --> 02:55:25,160 CARE SYSTEM IS PROBABLY NOT 4538 02:55:25,160 --> 02:55:27,640 SHARING DATA; RIGHT? 4539 02:55:27,640 --> 02:55:29,440 THAT IS NOT TRANSPARENT EITHER 4540 02:55:29,440 --> 02:55:32,640 AND THEY ARE NOT BENEFITING FROM 4541 02:55:32,640 --> 02:55:34,800 SHARED DATA FROM OTHER HEALTH 4542 02:55:34,800 --> 02:55:37,080 SYSTEMS IMPROVING MODELS BY 4543 02:55:37,080 --> 02:55:40,080 MAKING THEM MORE DIVERSE AND 4544 02:55:40,080 --> 02:55:41,120 PEOPLE DON'T KNOW THAT. 4545 02:55:41,120 --> 02:55:43,360 THEY DON'T KNOW ABOUT 4546 02:55:43,360 --> 02:55:44,560 COMPLEXITIES OF INTELLECTUAL 4547 02:55:44,560 --> 02:55:46,920 PROPERTY THAT GETS IN WAY OF 4548 02:55:46,920 --> 02:55:48,520 DATA SHARING AND THAT SORT OF 4549 02:55:48,520 --> 02:55:55,280 THING. I THINK THAT IS SUPER 4550 02:55:55,280 --> 02:55:58,440 IMPORTANT. 4551 02:55:58,440 --> 02:56:02,960 THAT IS WHERE THIS ISSUE OF 4552 02:56:02,960 --> 02:56:06,680 CHANGING CULTURE OF DATA 4553 02:56:06,680 --> 02:56:11,360 PRACTICES IS REALLY IMPORTANT. 4554 02:56:11,360 --> 02:56:12,840 PARTLY PEOPLE DON'T KNOW WHAT 4555 02:56:12,840 --> 02:56:14,640 THEY DON'T KNOW BECAUSE OF THEIR 4556 02:56:14,640 --> 02:56:16,640 CULTURES AND THEIR CULTURES AND 4557 02:56:16,640 --> 02:56:18,040 PRACTICES ARE DRIVING WHAT TYPES 4558 02:56:18,040 --> 02:56:19,640 OF THINGS THEY THINK ARE 4559 02:56:19,640 --> 02:56:21,600 IMPORTANT TO KNOW OR NOT KNOW. 4560 02:56:21,600 --> 02:56:25,520 FOR EXAMPLE, YOU KNOW, IF YOU 4561 02:56:25,520 --> 02:56:29,320 TALK TO -- THERE IS AN IDEA 4562 02:56:29,320 --> 02:56:31,960 THAT, YOU KNOW MANY FOR EXAMPLE 4563 02:56:31,960 --> 02:56:35,240 YOU ARE WORKING ON A PROTOTYPE 4564 02:56:35,240 --> 02:56:37,360 MODEL NO ETHICS ARE INVOLVED. 4565 02:56:37,360 --> 02:56:39,000 IT IS A PROTOTYPE. YOU DON'T 4566 02:56:39,000 --> 02:56:40,800 HAVE TO KNOW ABOUT ALL OF THE 4567 02:56:40,800 --> 02:56:42,520 ETHICS AND THAT SORT OF THING 4568 02:56:42,520 --> 02:56:44,360 AND THERE ARE MENTAL MODELS WHAT 4569 02:56:44,360 --> 02:56:47,200 IT IS YOU ARE DOING THAT DRIVES 4570 02:56:47,200 --> 02:56:48,720 A LOT OF HOW PEOPLE TAKE IN 4571 02:56:48,720 --> 02:56:54,080 OTHER PERSPECTIVES OR NOT. 4572 02:56:54,080 --> 02:56:55,920 >>ON THIS POINT I WANT TO GO 4573 02:56:55,920 --> 02:56:59,320 BACK TO LISA'S POINT ABOUT HOW 4574 02:56:59,320 --> 02:57:00,800 COMPLICATED ALL THIS IS AND WHAT 4575 02:57:00,800 --> 02:57:02,760 RESPONSIBILITY OR WHAT ARE 4576 02:57:02,760 --> 02:57:03,640 DIFFERENT LEVELS AND WHAT DOES 4577 02:57:03,640 --> 02:57:04,880 RESPONSIBILITY LOOK LIKE AT ALL 4578 02:57:04,880 --> 02:57:06,680 THOSE LEVELS AND THINK IT GETS 4579 02:57:06,680 --> 02:57:08,160 TO COMPLEXITY YOU TALK ABOUT 4580 02:57:08,160 --> 02:57:10,880 THAT PEOPLE DON'T KNOW WHAT THEY 4581 02:57:10,880 --> 02:57:11,560 DON'T KNOW. 4582 02:57:11,560 --> 02:57:13,240 THEY DON'T KNOW WHAT QUESTIONS 4583 02:57:13,240 --> 02:57:14,960 TO ASK AND THAT TEASING OUT WHAT 4584 02:57:14,960 --> 02:57:19,360 IS THE PROCESS AND WHAT ARE 4585 02:57:19,360 --> 02:57:22,600 DIFFERENT POINTS AT WHICH PUBLIC 4586 02:57:22,600 --> 02:57:24,040 MIGHT INFORM WHETHER WE PICK A 4587 02:57:24,040 --> 02:57:27,360 OR B OR WHAT DIRECTION WE GO IS 4588 02:57:27,360 --> 02:57:29,800 SOMETHING THAT WOULD BE HELPFUL 4589 02:57:29,800 --> 02:57:32,640 FOR NIH TO KNOW THIS IS A REALLY 4590 02:57:32,640 --> 02:57:34,120 COMPLICATED SPACE AND HAVE TO 4591 02:57:34,120 --> 02:57:35,920 FIGURE OUT WAYS TO BREAK IT DOWN 4592 02:57:35,920 --> 02:57:38,280 TO COMPONENT PARTS AND FIGURE 4593 02:57:38,280 --> 02:57:39,640 OUT WHAT RESPONSIBILITY AND 4594 02:57:39,640 --> 02:57:41,480 TRANSPARENCY AND RELIABILITY 4595 02:57:41,480 --> 02:57:45,320 LOOKS LIKE ALONG THIS WHOLE 4596 02:57:45,320 --> 02:57:45,600 PANELWAY. 4597 02:57:45,600 --> 02:57:50,760 BEFORE I REMIND OUR INTERNET 4598 02:57:50,760 --> 02:57:52,440 VISITORS THAT THEY CAN SUBMIT 4599 02:57:52,440 --> 02:57:53,640 QUESTIONS I WILL SWITCH TO THE 4600 02:57:53,640 --> 02:57:56,280 NEXT SLIDE AND WANT TO SAY TO 4601 02:57:56,280 --> 02:57:58,960 JAY AND PICK UP ON HIS POINT 4602 02:57:58,960 --> 02:58:01,080 ABOUT INTELLECTUAL PROPERTY; 4603 02:58:01,080 --> 02:58:02,760 RIGHT? IT IS ABOUT DATA 4604 02:58:02,760 --> 02:58:04,240 OWNERSHIP AND IS ABSOLUTELY THE 4605 02:58:04,240 --> 02:58:06,280 CASE AND WOULD LOVE TO HEAR 4606 02:58:06,280 --> 02:58:10,680 JEN'S VIEWS AND LAWYERS IN THE 4607 02:58:10,680 --> 02:58:14,040 ROOMS VIEWS ON THIS LATER. 4608 02:58:14,040 --> 02:58:15,520 GENERATIVE AI MAKING CODE 4609 02:58:15,520 --> 02:58:18,280 ALREADY OR AI THAT IS WRITING 4610 02:58:18,280 --> 02:58:20,200 SONGS AND PAINTING PICTURES IN 4611 02:58:20,200 --> 02:58:22,000 STYLE OF IS WE ARE JUST AT 4612 02:58:22,000 --> 02:58:25,560 BEGINNING OF ALL THOSE CREATORS 4613 02:58:25,560 --> 02:58:27,120 THAT ARE DEMANDING CREDIT FOR 4614 02:58:27,120 --> 02:58:28,640 THEIR WORK; RIGHT? 4615 02:58:28,640 --> 02:58:34,880 THAT IS RELATED TO THE DATA 4616 02:58:34,880 --> 02:58:35,480 OWNERSHIP DISCUSSION WE HAVE 4617 02:58:35,480 --> 02:58:37,880 BEEN HAVING THAT IS FASCINATED 4618 02:58:37,880 --> 02:58:39,800 BY THE EXAMPLE OF COMMUNITY 4619 02:58:39,800 --> 02:58:41,400 ASSOCIATION WITH OWNERSHIP OVER 4620 02:58:41,400 --> 02:58:44,920 DATA THAT IS STORED AT UVA. 4621 02:58:44,920 --> 02:58:47,760 THERE IS OF COURSE THE ENTIRE 4622 02:58:47,760 --> 02:58:49,040 DATA SOVEREIGNTY CONVERSATION 4623 02:58:49,040 --> 02:58:51,360 THAT IS HAPPENING IN INDIGENOUS 4624 02:58:51,360 --> 02:58:52,360 COMMUNITIES AND WHAT IT WILL 4625 02:58:52,360 --> 02:58:54,560 LOOK LIKE AND HOW IT WILL SHAPE 4626 02:58:54,560 --> 02:58:56,160 THIS SPACE IN OUR CONVERSATION 4627 02:58:56,160 --> 02:59:00,080 AND I WILL NOW REMIND OUR 4628 02:59:00,080 --> 02:59:03,280 VIEWERS ON LINE THAT YOU CAN 4629 02:59:03,280 --> 02:59:06,040 SUBMIT COMMENTS AND QUESTIONS TO 4630 02:59:06,040 --> 02:59:10,080 SCIENCE POLICY AT OD.NIH.GOV. 4631 02:59:10,080 --> 02:59:13,520 THEY WILL BE READ ANONYMOUSLY AT 4632 02:59:13,520 --> 02:59:14,600 MICROPHONE HERE. AND THAT ALL 4633 02:59:14,600 --> 02:59:16,680 OF THE MATERIALS ASSOCIATED WITH 4634 02:59:16,680 --> 02:59:19,800 THIS CONVERSATION ARE AVAILABLE 4635 02:59:19,800 --> 02:59:21,680 ONLINE AT THE WEBSITE. 4636 02:59:21,680 --> 02:59:23,360 ALL RIGHT. 4637 02:59:23,360 --> 02:59:29,480 I WANTED TO GO BACK AND FOCUS 4638 02:59:29,480 --> 02:59:31,600 AGAIN THAT GIVEN WHAT WE HAVE 4639 02:59:31,600 --> 02:59:34,640 LEARNED FROM OUR COMMUNITY 4640 02:59:34,640 --> 02:59:35,680 CONVERSATIONS LIKE WHAT 4641 02:59:35,680 --> 02:59:38,600 OPPORTUNITIES ARE THERE TO SHAPE 4642 02:59:38,600 --> 02:59:39,080 PRACTICE? 4643 02:59:39,080 --> 02:59:42,080 WHAT OPPORTUNITIES ARE THERE TO 4644 02:59:42,080 --> 02:59:44,280 SHAPE THE QUESTIONS THAT WE ARE 4645 02:59:44,280 --> 02:59:48,440 ASKING AND WAY THAT NIH IS 4646 02:59:48,440 --> 02:59:53,680 ASKING US TO DO RESEARCH. 4647 02:59:53,680 --> 02:59:55,680 JAKE, CAN I START WITH YOU? 4648 02:59:55,680 --> 02:59:58,280 >>SURE. I THINK THAT THE 4649 02:59:58,280 --> 03:00:00,000 BIGGEST OPPORTUNITY IS FOR NIH 4650 03:00:00,000 --> 03:00:02,400 TO LEAD BY EXAMPLE AND DON'T 4651 03:00:02,400 --> 03:00:05,000 THINK THAT NIH HAS AUTHORITY TO 4652 03:00:05,000 --> 03:00:07,680 CONTROL THE WHOLE ECOSYSTEM WE 4653 03:00:07,680 --> 03:00:09,240 DESCRIBED THAT IS VERY COMPLEX 4654 03:00:09,240 --> 03:00:12,120 AND IS DOMINATED BY COMMERCIAL 4655 03:00:12,120 --> 03:00:14,680 INDUSTRY RIGHT NOW THAT IS NOT 4656 03:00:14,680 --> 03:00:15,680 GOING TO WORK. 4657 03:00:15,680 --> 03:00:18,040 IF NIH COULD KIND OF TAKE THE 4658 03:00:18,040 --> 03:00:21,880 LEAD IN TERMS OF THINKING ABOUT 4659 03:00:21,880 --> 03:00:23,600 WHAT THE LANDSCAPE COULD LOOK 4660 03:00:23,600 --> 03:00:28,520 LIKE FOR CERTAINLY NIH-FUNDED 4661 03:00:28,520 --> 03:00:30,680 RESEARCH THAT IS WELL WITHIN ITS 4662 03:00:30,680 --> 03:00:33,880 PURVIEW AND FOR EXAMPLE FOR THE 4663 03:00:33,880 --> 03:00:35,320 REST, I THINK THAT WOULD START 4664 03:00:35,320 --> 03:00:37,960 THE CONVERSATION IN THE RIGHT 4665 03:00:37,960 --> 03:00:39,840 DIRECTION. I WOULD ENCOURAGE 4666 03:00:39,840 --> 03:00:42,520 NIH TO THINK PROACTIVELY ABOUT 4667 03:00:42,520 --> 03:00:44,600 NOT JUST WHAT IS HERE AND NOW 4668 03:00:44,600 --> 03:00:46,360 RIGHT THIS MINUTE BUT WHAT IS 4669 03:00:46,360 --> 03:00:48,560 COMING NEXT OR TRY TO OR HARD TO 4670 03:00:48,560 --> 03:00:52,720 DO ADMITTEDLY AND VERY IMPORTANT 4671 03:00:52,720 --> 03:00:59,200 AND BY THE WAY IS HAPPENING 4672 03:00:59,200 --> 03:01:01,560 INCREDIBLY FAST PACED TWO YEARS 4673 03:01:01,560 --> 03:01:04,320 TO BE WRITTEN NOT ABOUT THIS BUT 4674 03:01:04,320 --> 03:01:06,440 OTHER THINGS IS 2 YEARS TOO 4675 03:01:06,440 --> 03:01:09,120 LATE. CAN'T TELL YOU HOW MANY 4676 03:01:09,120 --> 03:01:11,040 CYCLES OF INFORMATION TECHNOLOGY 4677 03:01:11,040 --> 03:01:13,760 TURNOVER HAVE HAPPENED IN THAT 4678 03:01:13,760 --> 03:01:16,640 SPAN OF TIME. 4679 03:01:16,640 --> 03:01:18,640 IT IS MIND BOGGLING AND HALF 4680 03:01:18,640 --> 03:01:21,240 LIFE OF DISCOVERY IS MEASURED IN 4681 03:01:21,240 --> 03:01:22,680 YEARS AND HOURS AND DAY WANDS HE 4682 03:01:22,680 --> 03:01:24,760 HAVE TO THINK AT THAT PACE TOO. 4683 03:01:24,760 --> 03:01:27,320 SPEED MATTERS HERE. I WOULD 4684 03:01:27,320 --> 03:01:31,280 ALSO ENCOURAGE NIH TO TAKE THE 4685 03:01:31,280 --> 03:01:34,760 LEAD IN HURRYING UP. 4686 03:01:34,760 --> 03:01:38,160 THAT WOULD ALSO SET A CLEAR 4687 03:01:38,160 --> 03:01:40,000 EXAMPLE THAT IS NECESSARY TO 4688 03:01:40,000 --> 03:01:44,320 MAKE A DIFFERENCE IN IMPACT OF 4689 03:01:44,320 --> 03:01:44,680 CONVERSATIONS. 4690 03:01:44,680 --> 03:01:48,360 >>WHAT NEXTRAC TOOK ITSELF TO 4691 03:01:48,360 --> 03:01:50,240 DO MANDATE TO DO IS HORIZON 4692 03:01:50,240 --> 03:01:52,040 SCANNING AND WHAT YOU ARE ASKING 4693 03:01:52,040 --> 03:01:54,720 FOR IS YOPD HORIZON SCANNING AND 4694 03:01:54,720 --> 03:01:56,680 VISIONING ABOUT WHAT THE FUTURE 4695 03:01:56,680 --> 03:01:57,560 MIGHT BE. 4696 03:01:57,560 --> 03:02:00,560 >>YEAH. HORIZON TODAY WILL BE 4697 03:02:00,560 --> 03:02:04,040 OBSOLETE IN 24 MONTHS I 4698 03:02:04,040 --> 03:02:04,400 GUARANTEE YOU. 4699 03:02:04,400 --> 03:02:05,760 >>MAYBE THINKING ABOUT IDEAS 4700 03:02:05,760 --> 03:02:08,720 FOR HOW TO MANAGE IN THAT 4701 03:02:08,720 --> 03:02:08,960 CONTEXT. 4702 03:02:08,960 --> 03:02:12,320 >>YOU WANT A SOLUTION TO THE 4703 03:02:12,320 --> 03:02:15,360 PROBLEM I JUST PROPOSED SGLI 4704 03:02:15,360 --> 03:02:17,320 WISH I HAD A GOOD ONE. 4705 03:02:17,320 --> 03:02:19,080 >>START THE WAY YOU HAVE 4706 03:02:19,080 --> 03:02:20,720 STARTED AND GET SMART AND VERY 4707 03:02:20,720 --> 03:02:22,120 COMMITTED PEOPLE IN THE ROOM 4708 03:02:22,120 --> 03:02:24,520 FROM MULTIPLE, MULTIPLE 4709 03:02:24,520 --> 03:02:26,600 DISCIPLINES TO THINK ABOUT IT 4710 03:02:26,600 --> 03:02:27,680 AND START TO IMAGINE WHAT YOU 4711 03:02:27,680 --> 03:02:32,720 WOULD HAVE TO DO TO DO THAT. 4712 03:02:32,720 --> 03:02:33,960 AND TO ENGAGE PUBLIC THAT I 4713 03:02:33,960 --> 03:02:35,520 THINK PEOPLE CARE ABOUT THIS TOO 4714 03:02:35,520 --> 03:02:39,760 AND THEY KNOW IT AND HOW FAST 4715 03:02:39,760 --> 03:02:41,360 THINGS ARE CHANGING AND NOT 4716 03:02:41,360 --> 03:02:43,360 SAYING ANYTHING MOST PEOPLE 4717 03:02:43,360 --> 03:02:44,160 DON'T ALREADY KNOW. 4718 03:02:44,160 --> 03:02:47,120 THEY ARE WORRIED ABOUT US NOT 4719 03:02:47,120 --> 03:02:48,560 BEING ABLE TO KEEP UP MUCH LESS 4720 03:02:48,560 --> 03:02:50,200 GET AHEAD OF IT. IF YOU THINK 4721 03:02:50,200 --> 03:02:52,280 ABOUT HOW TO HAVE A CONVERSATION 4722 03:02:52,280 --> 03:02:54,400 ABOUT HOW TO GET AHEAD OF THIS 4723 03:02:54,400 --> 03:02:57,040 YOU WILL FIND LOTS OF VERY 4724 03:02:57,040 --> 03:02:58,760 COMMITTED PEOPLE WITH GOOD IDEAS 4725 03:02:58,760 --> 03:03:01,760 COMING TO THE TABLE GIVING GOOD 4726 03:03:01,760 --> 03:03:03,240 SUGGESTIONS CROWD SOURCING. 4727 03:03:03,240 --> 03:03:04,560 >>THANK YOU. LISA? 4728 03:03:04,560 --> 03:03:08,320 >>SURE. IF I COULD BE BOLD 4729 03:03:08,320 --> 03:03:08,520 HERE. 4730 03:03:08,520 --> 03:03:09,320 >>GEEZ. 4731 03:03:09,320 --> 03:03:12,520 >>AND SUGGEST A VISION OF SOME 4732 03:03:12,520 --> 03:03:14,160 THINGS I THINK WE MIGHT DO. I 4733 03:03:14,160 --> 03:03:17,640 THINK THAT I SEE THE NIH. AND 4734 03:03:17,640 --> 03:03:19,360 AS HAVING TREMENDOUS OPPORTUNITY 4735 03:03:19,360 --> 03:03:23,120 HERE. NOT JUST NIH BUT THE 4736 03:03:23,120 --> 03:03:24,600 FEDERAL GOVERNMENT. 4737 03:03:24,600 --> 03:03:27,240 IN TERMS OF BRINGING TOGETHER 4738 03:03:27,240 --> 03:03:28,040 DIFFERENT GROUPS WITHIN THE 4739 03:03:28,040 --> 03:03:29,600 GOVERNMENT THAT ARE WORKING IN 4740 03:03:29,600 --> 03:03:31,600 THIS SPACE; RIGHT? 4741 03:03:31,600 --> 03:03:34,680 FDA IS DOING WORK IN DIGITAL 4742 03:03:34,680 --> 03:03:37,280 HEALTH AND WHOLE CONCEPT OF 4743 03:03:37,280 --> 03:03:40,200 SOFTWARE AS A MEDICAL DEVICE AND 4744 03:03:40,200 --> 03:03:42,360 REGULATION IN THAT SPACE AND DOD 4745 03:03:42,360 --> 03:03:45,600 IS DOING WORK IN AI. THERE IS 4746 03:03:45,600 --> 03:03:47,560 I'M SURE MANY DIFFERENT PARTS OF 4747 03:03:47,560 --> 03:03:49,760 THE GOVERNMENT I'M NOT AWARE OF 4748 03:03:49,760 --> 03:03:51,080 WORKING IN THIS SPACE. I THINK 4749 03:03:51,080 --> 03:03:52,640 THERE IS AN OPPORTUNITY TO COME 4750 03:03:52,640 --> 03:03:53,960 TOGETHER NOT ONLY WITHIN THE 4751 03:03:53,960 --> 03:03:57,040 GOVERNMENT BUT ALSO IN TERMS OF 4752 03:03:57,040 --> 03:04:02,480 PUBLIC/PRIVATE PARTNERSHIPS TO 4753 03:04:02,480 --> 03:04:04,200 CREATE A PATH FORWARD HERE. I 4754 03:04:04,200 --> 03:04:07,960 THINK TO ONE -- LET ME JUST 4755 03:04:07,960 --> 03:04:10,080 THROW OUT SEVERAL DIFFERENT 4756 03:04:10,080 --> 03:04:13,160 OPPORTUNITIES AND ONE IS THE 4757 03:04:13,160 --> 03:04:17,400 SPACE OF REGULATION AND JAY IS 4758 03:04:17,400 --> 03:04:18,800 MENTIONING THIS IS MOVING FAERT 4759 03:04:18,800 --> 03:04:21,960 AND NO OVERSIGHT AT THIS POINT 4760 03:04:21,960 --> 03:04:23,360 IN TERMS WHAT PEOPLE CAN DO IN 4761 03:04:23,360 --> 03:04:26,520 SPACE OF AI AND NOT CLARITY ON 4762 03:04:26,520 --> 03:04:28,200 BOUNDARIES OF CLINICAL DECISIONS 4763 03:04:28,200 --> 03:04:29,880 SUPPORT SYSTEMS NEEDING 4764 03:04:29,880 --> 03:04:31,960 REGULATION AND HOW IT DIFFERS 4765 03:04:31,960 --> 03:04:33,720 FROM PREDICTIVE ALGORITHMS THAT 4766 03:04:33,720 --> 03:04:35,800 HEALTH CARE PROVIDERS HAVE USED 4767 03:04:35,800 --> 03:04:37,840 FOR DECADES AND THINKING ABOUT 4768 03:04:37,840 --> 03:04:39,560 THAT THERE DOESN'T NEED TO BE 4769 03:04:39,560 --> 03:04:41,280 ANY REGULATION THERE. AND MY 4770 03:04:41,280 --> 03:04:44,080 OWN FEELING IS THAT WOULD BE A 4771 03:04:44,080 --> 03:04:45,920 MISTAKE. SOME PEOPLE HAVE SAID 4772 03:04:45,920 --> 03:04:47,920 WE SHOULD BAN ALL THIS AND PUT A 4773 03:04:47,920 --> 03:04:49,080 PAUSE ON IT. 4774 03:04:49,080 --> 03:04:51,840 THERE IS TOO MUCH OF A POTENTIAL 4775 03:04:51,840 --> 03:04:53,920 FOR HARM. THEN I THINK THAT THE 4776 03:04:53,920 --> 03:04:57,280 MORE LIKELY SCENARIO I TAKE A 4777 03:04:57,280 --> 03:04:59,000 MORE MODERATE PERSPECTIVE HERE 4778 03:04:59,000 --> 03:05:07,280 IS THAT THERE CAN BE SOME 4779 03:05:07,280 --> 03:05:09,800 CONTROL OVER USE OF AI IN 4780 03:05:09,800 --> 03:05:11,560 HEALTHCARE THAT WE ARE FOCUSED 4781 03:05:11,560 --> 03:05:14,080 ON HERE AND ANALOGY IN MY MIND 4782 03:05:14,080 --> 03:05:18,400 IS TO CLINICAL TRIAL AND HOW WE 4783 03:05:18,400 --> 03:05:20,080 REGULATE THEM AND NEW 4784 03:05:20,080 --> 03:05:21,720 DEVELOPMENT OF NEW DRUGS TESTED 4785 03:05:21,720 --> 03:05:23,320 IN CLINICAL TRIALS AND DOING 4786 03:05:23,320 --> 03:05:26,960 THAT IN CONTEXT OF AI TOO. 4787 03:05:26,960 --> 03:05:28,760 THERE IS OPPORTUNITY FOR 4788 03:05:28,760 --> 03:05:30,160 GOVERNMENT IN NIH TO COME 4789 03:05:30,160 --> 03:05:33,720 TOGETHER WITH PARTNERS 4790 03:05:33,720 --> 03:05:38,160 DEVELOPING CLARITY ON WHAT 4791 03:05:38,160 --> 03:05:39,960 REGULATION LOOKS LIKE AND 4792 03:05:39,960 --> 03:05:41,480 GREATER DATA PRIVACY TLANDZ IS 4793 03:05:41,480 --> 03:05:42,280 OPPORTUNITIES AND QUESTIONS WHAT 4794 03:05:42,280 --> 03:05:45,840 IS ROLE OF NIH AND IN HELPING TO 4795 03:05:45,840 --> 03:05:47,760 SHEPHERD THOSE ALONG AND HAVING 4796 03:05:47,760 --> 03:05:50,480 THAT IMPLEMENTED TO MITIGATE 4797 03:05:50,480 --> 03:05:52,520 POTENTIAL HARMS TO INDIVIDUALS 4798 03:05:52,520 --> 03:05:57,520 AND WE NEED A RENLTRY OF AI 4799 03:05:57,520 --> 03:06:00,400 ALGORITHMS AND HEALTHCARE. 4800 03:06:00,400 --> 03:06:03,360 NIH AND GOVERNMENT CDC AND 4801 03:06:03,360 --> 03:06:05,320 REGISTRIES FOR CANCER DATABASES 4802 03:06:05,320 --> 03:06:08,160 AND PARTS OF RARE DISEASES AND 4803 03:06:08,160 --> 03:06:11,360 WHY NOT HAVE THAT IN FOR AI 4804 03:06:11,360 --> 03:06:12,600 ALGORITHMS SO WE CAN NOT ONLY 4805 03:06:12,600 --> 03:06:14,440 UNDERSTAND WHAT IS HAPPENING BUT 4806 03:06:14,440 --> 03:06:16,560 ALSO CAN ENSURE THAT THE 4807 03:06:16,560 --> 03:06:19,720 BENEFITS OF THOSE ALGORITHMS ARE 4808 03:06:19,720 --> 03:06:21,280 ACTUALLY BROUGHT THROUGH TO ALL 4809 03:06:21,280 --> 03:06:25,080 PARTS OF ALL COMMUNITIES AND 4810 03:06:25,080 --> 03:06:29,720 THOSE WHO MAY HAVE BEEN 4811 03:06:29,720 --> 03:06:31,320 ALGORITHM MICLY UNDERSERVED AND 4812 03:06:31,320 --> 03:06:34,520 IDEA OF BELL MONT 2.0 IS 4813 03:06:34,520 --> 03:06:36,520 IMPORTANT AND COMPREHENSIVE 4814 03:06:36,520 --> 03:06:39,720 ETHICAL FRAMEWORK ENSURING WE 4815 03:06:39,720 --> 03:06:44,360 HAVE PLACE GUARDS IN PLACE AND 4816 03:06:44,360 --> 03:06:46,680 INTEGRATING AI ML INTO 4817 03:06:46,680 --> 03:06:48,280 HEALTHCARE AND COMPANION TO THAT 4818 03:06:48,280 --> 03:06:52,040 HAVING A KIND OF AI RESEARCH 4819 03:06:52,040 --> 03:06:53,280 REVIEW COMMITTEE WHETHER 4820 03:06:53,280 --> 03:06:55,320 REGIONALLY OR WITHIN HEALTH CARE 4821 03:06:55,320 --> 03:06:56,920 SYSTEMS WE CAN REFLECT HOW WE 4822 03:06:56,920 --> 03:06:59,720 SET UP IRBS AND ACADEMIC 4823 03:06:59,720 --> 03:07:01,600 SETTINGS IS THAT THE BEST WAY 4824 03:07:01,600 --> 03:07:06,440 ACADEMIC IRBS? 4825 03:07:06,440 --> 03:07:08,800 AS UNL BIASED AND INDEPENDENT AS 4826 03:07:08,800 --> 03:07:10,680 WE MIGHT LIKE OR BETTER APPROACH 4827 03:07:10,680 --> 03:07:11,840 AND OPPORTUNITY TO THINK ABOUT 4828 03:07:11,840 --> 03:07:17,800 WHAT THAT REVIEW LOOKS LIKE. 4829 03:07:17,800 --> 03:07:20,160 STANDARDS ON GOVERNANCE AND 4830 03:07:20,160 --> 03:07:21,640 PROCESSES IMPLEMENTATION VALUE 4831 03:07:21,640 --> 03:07:24,040 OF DATA QUALITY ASSESSING 4832 03:07:24,040 --> 03:07:25,760 ALGORITHMS AND MONITORING 4833 03:07:25,760 --> 03:07:26,520 ALGORITHMS AND DEVELOPING 4834 03:07:26,520 --> 03:07:28,240 FRAMEWORK IS A PIECE OF THIS 4835 03:07:28,240 --> 03:07:29,560 THAT NEEDS TO HAPPEN AND 4836 03:07:29,560 --> 03:07:31,440 DEVELOPING AI TOOLS FOR 4837 03:07:31,440 --> 03:07:32,920 PREPAREDNESS ON TRANSPARENCY AND 4838 03:07:32,920 --> 03:07:35,320 ON CLARIFYING WHAT ARE 4839 03:07:35,320 --> 03:07:37,480 RESPONSIBLE AI PRACTICES AND 4840 03:07:37,480 --> 03:07:39,080 WHAT WE MEAN BY EXPLAINABILITY 4841 03:07:39,080 --> 03:07:44,040 AND WHAT WE MEAN BY 4842 03:07:44,040 --> 03:07:46,400 INTERPRETAB 4843 03:07:46,400 --> 03:07:46,800 INTERPRETABILITY. 4844 03:07:46,800 --> 03:07:48,520 HOW CAN WE STANDARDIZE 4845 03:07:48,520 --> 03:07:49,800 TRANSPARENCY OR MODEL CARDS TO 4846 03:07:49,800 --> 03:07:50,800 GIVE PEOPLE AN UNDERSTANDING 4847 03:07:50,800 --> 03:07:53,800 WHAT IS GOING INTO AN ALGORITHM 4848 03:07:53,800 --> 03:07:57,200 AND DEMYSTIFY THAT BLACK BOX OF 4849 03:07:57,200 --> 03:07:57,520 AI? 4850 03:07:57,520 --> 03:08:00,600 AND THEN I THINK THERE IS A NEED 4851 03:08:00,600 --> 03:08:03,040 FOR A NATIONAL LABORATORY WHERE 4852 03:08:03,040 --> 03:08:06,520 WE CAN CREATE AN AI EVALUATION 4853 03:08:06,520 --> 03:08:09,320 SANDBOX TO REALLY ASSESS 4854 03:08:09,320 --> 03:08:11,320 ROBUSTNESS OF THESE ALGORITHMS 4855 03:08:11,320 --> 03:08:14,840 AND TO ASSESS THEM FOR BIAS. 4856 03:08:14,840 --> 03:08:15,320 >>YEAH. 4857 03:08:15,320 --> 03:08:17,560 >>SO, I THINK THAT THERE ARE 4858 03:08:17,560 --> 03:08:19,080 TREMENDOUS OPPORTUNITIES HERE IN 4859 03:08:19,080 --> 03:08:20,280 THIS SPACE THAT IS EXCITING WHEN 4860 03:08:20,280 --> 03:08:21,600 YOU THINK ABOUT IT. 4861 03:08:21,600 --> 03:08:24,520 IF WE TAKE A STEP BACK. WE ARE 4862 03:08:24,520 --> 03:08:25,720 THOUGHTFUL AND THAT IS ABOUT 4863 03:08:25,720 --> 03:08:27,720 WHERE WE WANT TO GO AND WHAT OUR 4864 03:08:27,720 --> 03:08:29,640 VISION IS AND WHAT IDEA OF 4865 03:08:29,640 --> 03:08:31,600 SUCCESS LOOKS LIKE HERE AND WHAT 4866 03:08:31,600 --> 03:08:33,200 STEPS ARE WE NEED TO PUT INTO 4867 03:08:33,200 --> 03:08:35,760 PLACE TO GET THERE WE CAN HAVE A 4868 03:08:35,760 --> 03:08:36,640 TREMENDOUS IMPACT. 4869 03:08:36,640 --> 03:08:37,320 >>THANK YOU. 4870 03:08:37,320 --> 03:08:41,880 >>NIH IS ALREADY FUNDING LARGE 4871 03:08:41,880 --> 03:08:45,640 SCALE AI PROJECTS FOCUSED ON 4872 03:08:45,640 --> 03:08:48,760 DEVELOPING AI-READY DATA SETS 4873 03:08:48,760 --> 03:08:51,000 THAT DO OR ARE MINDFUL ABOUT 4874 03:08:51,000 --> 03:08:51,600 COMPOSITION, ET CETERA. 4875 03:08:51,600 --> 03:08:53,640 THAT MIGHT BE A PLACE FOR THE 4876 03:08:53,640 --> 03:08:59,320 SANDBOX IDEA THAT YOU JUST 4877 03:08:59,320 --> 03:09:00,640 ARTICUL 4878 03:09:00,640 --> 03:09:01,000 ARTICULATED. 4879 03:09:01,000 --> 03:09:05,840 >>I'M CURIOUS TO FOLLOW UP AND 4880 03:09:05,840 --> 03:09:07,800 DON'T KNOW IF YOU SEE AI WORKS 4881 03:09:07,800 --> 03:09:11,720 ASIDE IN TERMS OF DATA PRIVACY, 4882 03:09:11,720 --> 03:09:13,280 ET CETERA, ASIDE FROM WORK WE 4883 03:09:13,280 --> 03:09:15,240 ARE DOING ALREADY AND THERE IS 4884 03:09:15,240 --> 03:09:17,440 ATTENTION BETWEEN WHAT WE HEARD 4885 03:09:17,440 --> 03:09:19,320 FROM COMMUNITY PARTICIPANTS AND 4886 03:09:19,320 --> 03:09:21,920 SORT OF THE PUSH TO BROAD 4887 03:09:21,920 --> 03:09:24,560 CONSENT AND BROAD SHARING AND 4888 03:09:24,560 --> 03:09:26,480 USE THAT WE ARE SEEING RIGHT 4889 03:09:26,480 --> 03:09:26,800 NOW. 4890 03:09:26,800 --> 03:09:29,880 HOW DO WE MANAGE THAT TENSION? 4891 03:09:29,880 --> 03:09:35,680 WHAT DO WE DO WITH THAT? 4892 03:09:35,680 --> 03:09:39,480 >>I'M HAPPY TO JUMP IN HERE. I 4893 03:09:39,480 --> 03:09:40,880 THINK PART OF THE REASON WHY 4894 03:09:40,880 --> 03:09:42,200 THIS WORK THAT YOU HAVE BEEN 4895 03:09:42,200 --> 03:09:45,160 DOING IN TERMS OF PUBLIC 4896 03:09:45,160 --> 03:09:48,560 ENGAGEMENT AND WHAT I WOULD CALL 4897 03:09:48,560 --> 03:09:51,200 DEMOCRATIC DELIBERATION AND 4898 03:09:51,200 --> 03:09:54,080 BIOETHICS DELIBERATION IS SO, SO 4899 03:09:54,080 --> 03:09:55,520 IMPORTANT. I THINK THAT SETTING 4900 03:09:55,520 --> 03:10:00,400 IN SOME WAYS WE NEED TO RESET 4901 03:10:00,400 --> 03:10:01,760 EXPECTATIONS WITH THE PUBLIC AND 4902 03:10:01,760 --> 03:10:04,680 TO IN TERMS OF PRIVACY; RIGHT? 4903 03:10:04,680 --> 03:10:06,440 WE MIGHT NOT BE ABLE TO -- 4904 03:10:06,440 --> 03:10:08,560 ESPECIALLY WHEN TALKING ABOUT 4905 03:10:08,560 --> 03:10:10,240 INTEGRATING GENOMIC DATA THAT 4906 03:10:10,240 --> 03:10:12,160 MANY PEOPLE WOULD SAY IT IS NOT. 4907 03:10:12,160 --> 03:10:14,320 YOU KNOW, YOU CAN NEVER 4908 03:10:14,320 --> 03:10:16,240 COMPLETELY PROTECT PRIVACY OF 4909 03:10:16,240 --> 03:10:18,120 GENOMIC DATA AND IF WE WANT TO 4910 03:10:18,120 --> 03:10:20,120 REALIZE ALL BENEFITS OF MACHINE 4911 03:10:20,120 --> 03:10:22,040 LEARNING AND AI AND HEALTH CARE 4912 03:10:22,040 --> 03:10:24,560 IS THE INTEGRATION OF GENOMIC 4913 03:10:24,560 --> 03:10:26,240 DATA WITH ALL OTHER DATA THAT IS 4914 03:10:26,240 --> 03:10:29,240 GOING TO ALLOW US TO MAKE 4915 03:10:29,240 --> 03:10:30,960 POWERFUL -- GAIN POWERFUL 4916 03:10:30,960 --> 03:10:32,800 INSIGHTS AND THINK THAT 4917 03:10:32,800 --> 03:10:34,480 RESETTING THE PUBLIC'S 4918 03:10:34,480 --> 03:10:35,600 EXPECTATIONS AND FIRST OF ALL 4919 03:10:35,600 --> 03:10:38,000 THERE ARE TRADEOFFS WE CAN'T 4920 03:10:38,000 --> 03:10:41,080 ASSURE PEOPLE THERE WILL BE 100% 4921 03:10:41,080 --> 03:10:43,560 PROTECTION OF PRIVACY AND MAYBE 4922 03:10:43,560 --> 03:10:45,160 RISKS ARE MINIMAL AND WE CAN DO 4923 03:10:45,160 --> 03:10:47,880 EVERYTHING WE CAN AND YOU KNOW A 4924 03:10:47,880 --> 03:10:49,800 CONCEPT OF FEDERATED LEARNING 4925 03:10:49,800 --> 03:10:51,880 AND PRIVACY ON DEVICES AND THERE 4926 03:10:51,880 --> 03:10:53,720 IS MANY TECHNOLOGICAL FIXES THAT 4927 03:10:53,720 --> 03:10:55,680 WE CAN MAKE PROGRESS ON THAT 4928 03:10:55,680 --> 03:10:57,360 DOESN'T MEAN IT IS PERFECT. I 4929 03:10:57,360 --> 03:10:58,920 THINK THERE IS A TENSION THERE. 4930 03:10:58,920 --> 03:11:00,520 I THINK THAT WE SHOULD OWN IT. 4931 03:11:00,520 --> 03:11:05,880 I DON'T -- I THINK THAT -- I'M A 4932 03:11:05,880 --> 03:11:07,720 BELIEVER IN RADICAL TRANSPARENCY 4933 03:11:07,720 --> 03:11:10,960 AND DON'T THINK SKIRTING ISSUES 4934 03:11:10,960 --> 03:11:12,560 OR I JUST REALLY BELIEVE IN 4935 03:11:12,560 --> 03:11:15,320 SAYING THINGS AS THEY ARE. AND 4936 03:11:15,320 --> 03:11:16,480 HOPEFULLY THE PUBLIC THEN NEEDS 4937 03:11:16,480 --> 03:11:18,560 TO HAVE A CONVERSATION THAT IS 4938 03:11:18,560 --> 03:11:21,160 ABOUT HOW THEY WANT TO ASSESS 4939 03:11:21,160 --> 03:11:24,560 TRADEOFFS AND THERE MIGHT BE 4940 03:11:24,560 --> 03:11:28,520 SIGNIFICANT BENEFITS TO SHARING 4941 03:11:28,520 --> 03:11:31,880 DATA DESPITE THAT SMALL RISK. 4942 03:11:31,880 --> 03:11:35,920 >>THANK YOU GETTING TO MILDRED 4943 03:11:35,920 --> 03:11:36,840 AND MONICA ABOUT OPPORTUNITIES 4944 03:11:36,840 --> 03:11:39,120 FOR SHAPING POLICY AND PRACTICE 4945 03:11:39,120 --> 03:11:40,800 BEFORE I TURN TO QUESTIONS IN 4946 03:11:40,800 --> 03:11:44,240 THE ROOM AND IN ONLINE AUDIENCE. 4947 03:11:44,240 --> 03:11:46,440 >>YEAH. I THINK THAT I 4948 03:11:46,440 --> 03:11:48,200 COMPLETELY AGREE WITH JAY THAT 4949 03:11:48,200 --> 03:11:53,080 THE NIH HAS -- YOU KNOW, IT IS 4950 03:11:53,080 --> 03:11:57,280 MANDATED AND SCOPE. 4951 03:11:57,280 --> 03:12:01,320 WHERE IT CAN BE INFLUENTIAL IN 4952 03:12:01,320 --> 03:12:11,800 WAYS TO BE COMPLEMENTARY AND 4953 03:12:15,400 --> 03:12:20,880 RESEARCH IN CONDUCT OF DATA AND 4954 03:12:20,880 --> 03:12:22,160 THINKING ABOUT HOW TO INTRODUCE 4955 03:12:22,160 --> 03:12:23,840 DATA THAT YOU HAVE THAT YOU 4956 03:12:23,840 --> 03:12:27,800 CREATED THAT IS FANTASTIC DATA 4957 03:12:27,800 --> 03:12:29,480 INTEGRATING INTO CURRICULUM OF 4958 03:12:29,480 --> 03:12:31,160 ANYBODY WORKING WITH DATA AND 4959 03:12:31,160 --> 03:12:32,840 THEY NEED TO UNDERSTAND AND 4960 03:12:32,840 --> 03:12:33,800 EVERYONE NEEDS TO UNDERSTAND IT 4961 03:12:33,800 --> 03:12:35,800 IS NOT DATA BUT PEOPLE; RIGHT? 4962 03:12:35,800 --> 03:12:37,600 WE FORGET THAT AND HAVE TO 4963 03:12:37,600 --> 03:12:39,320 REMIND PEOPLE ALL THE TIME IT IS 4964 03:12:39,320 --> 03:12:40,960 NOT DATA BUT PEOPLE. YOU ARE A 4965 03:12:40,960 --> 03:12:42,920 PERSON TOO. WHAT WOULD YOU FEEL 4966 03:12:42,920 --> 03:12:44,760 LIKE IFFUR DATA WAS IN THE DATA 4967 03:12:44,760 --> 03:12:48,560 SET AND USED IN WAYS IT MIGHT BE 4968 03:12:48,560 --> 03:12:51,200 USED OR MISUSED IN CERTAIN WAYS. 4969 03:12:51,200 --> 03:12:54,640 HOW DO WE DO AND CAN USE 4970 03:12:54,640 --> 03:12:57,120 TRAINING VENUE TO ENCOURAGE 4971 03:12:57,120 --> 03:12:59,640 PEOPLE TO DO EMPATHY WORK AND 4972 03:12:59,640 --> 03:13:01,560 PUT YOURSELF IN SHOES OF -- 4973 03:13:01,560 --> 03:13:02,160 RIGHT? 4974 03:13:02,160 --> 03:13:05,080 YOU BE ON THE OTHER SIDE NOW. 4975 03:13:05,080 --> 03:13:09,720 SO, I THINK THAT IS IMPORTANT. 4976 03:13:09,720 --> 03:13:13,560 AND IN TERMS OF REGULATION WE 4977 03:13:13,560 --> 03:13:16,160 ARE IN THAT ZONE WHICH IS VERY 4978 03:13:16,160 --> 03:13:19,240 FUZZY AND NOT CLEAR HOW TO 4979 03:13:19,240 --> 03:13:21,560 REGULATE OR USE DATA. 4980 03:13:21,560 --> 03:13:23,240 ONE THING THAT SANDRA OFFERED TO 4981 03:13:23,240 --> 03:13:26,200 TALK ABOUT IS A RIGHT TO A 4982 03:13:26,200 --> 03:13:27,320 REASONABLE INFERENCE THAT IS NOT 4983 03:13:27,320 --> 03:13:28,840 REALLY DATA THAT PEOPLE ARE 4984 03:13:28,840 --> 03:13:31,880 CONCERNED ABOUT AND I READ ABOUT 4985 03:13:31,880 --> 03:13:35,120 IN THESE RESPONSES. 4986 03:13:35,120 --> 03:13:41,000 IT IS HOW THEY ARE BEING USED 4987 03:13:41,000 --> 03:13:42,960 AND DATA PROTECTION IF YOU 4988 03:13:42,960 --> 03:13:47,120 PROTECT DATA YOU ARE GOOD. 4989 03:13:47,120 --> 03:13:48,400 REALLY YOU HAVEN'T STARTED YET 4990 03:13:48,400 --> 03:13:50,760 AND IT IS REALLY ABOUT HOW YOU 4991 03:13:50,760 --> 03:13:52,720 ARE USING DATA TO MAKE 4992 03:13:52,720 --> 03:13:53,400 INFERENCES ABOUT PEOPLE. 4993 03:13:53,400 --> 03:13:54,000 >>THAT IS RIGHT. 4994 03:13:54,000 --> 03:13:56,080 >>THAT HAVE NOTHING TO DO WITH 4995 03:13:56,080 --> 03:13:56,520 DATA. 4996 03:13:56,520 --> 03:13:58,160 HOW DO YOU KNOW SOMEONE IS 4997 03:13:58,160 --> 03:14:02,080 PREGNANT OR WILL HAVE A BABY IN 4998 03:14:02,080 --> 03:14:05,480 6 WEEKS AND THERE IS ALL THIS 4999 03:14:05,480 --> 03:14:06,840 INFERENCE THAT HAPPENS AND 5000 03:14:06,840 --> 03:14:10,280 NOBODY TO PROTECT MODELING AND 5001 03:14:10,280 --> 03:14:13,560 PREDICTION AND THOSE SORTS OF 5002 03:14:13,560 --> 03:14:15,240 THINGS THAT IS ANOTHER PLACE FOR 5003 03:14:15,240 --> 03:14:16,520 POLICY TO PUT ATTENTION. 5004 03:14:16,520 --> 03:14:20,160 >>TO ADD TO THAT I WOULD SAY 5005 03:14:20,160 --> 03:14:22,320 THIS MIGHT BE NOT A NORM FOR 5006 03:14:22,320 --> 03:14:23,840 SCIENTIFIC COMMUNITY AND HAVE 5007 03:14:23,840 --> 03:14:28,680 YOU CONSIDERED OR NIH HAVE YOU 5008 03:14:28,680 --> 03:14:30,640 CONSIDERED USING COMMUNITY 5009 03:14:30,640 --> 03:14:32,320 MEMBERS FOR OUTSIDE VALIDATORS 5010 03:14:32,320 --> 03:14:35,640 FOR DATA BEING USED TO BUILD 5011 03:14:35,640 --> 03:14:37,200 ALGORITHMS AND AFTERWARDS THERE 5012 03:14:37,200 --> 03:14:39,520 IS A PLACE FOR THE COMMUNITY, 5013 03:14:39,520 --> 03:14:42,560 YOU KNOW, COMMUNITIES TO BE PART 5014 03:14:42,560 --> 03:14:49,320 OF THAT REVIEW PROCESS, TO, YOU 5015 03:14:49,320 --> 03:14:51,320 KNOW REVIEW FOR CULTURAL 5016 03:14:51,320 --> 03:14:52,920 IMPLICATIONS AND REVIEW FOR TONE 5017 03:14:52,920 --> 03:14:55,640 AND SOCIAL MEDIA THINKING 5018 03:14:55,640 --> 03:14:57,720 SPECIFICALLY ABOUT CASE STUDY 5019 03:14:57,720 --> 03:15:00,000 REVIEWING FOR HUMOR AND OTHER 5020 03:15:00,000 --> 03:15:01,840 PIECE WE HEARD LOUD AND CLEAR 5021 03:15:01,840 --> 03:15:03,320 FROM COMMUNITIES AS WELL TIEING 5022 03:15:03,320 --> 03:15:05,040 INTO THIS BEFORE SOMETHING IS 5023 03:15:05,040 --> 03:15:08,560 PUBLISHED HAVING COMMUNITIES 5024 03:15:08,560 --> 03:15:10,480 THAT ALSO REVIEW AND, YOU KNOW, 5025 03:15:10,480 --> 03:15:11,640 BECAUSE THERE IS AN OPPORTUNITY 5026 03:15:11,640 --> 03:15:13,440 AND THERE IS AN OPPORTUNITY FOR 5027 03:15:13,440 --> 03:15:15,320 BIAS INITIALLY AND THERE IS AN 5028 03:15:15,320 --> 03:15:18,640 OPPORTUNITY FOR STIGMA, I THINK, 5029 03:15:18,640 --> 03:15:19,960 ON THE OUTSET. 5030 03:15:19,960 --> 03:15:21,960 BEING PART OF THAT, YOU KNOW, 5031 03:15:21,960 --> 03:15:25,280 PEER REVIEW PROCESS, 5032 03:15:25,280 --> 03:15:26,160 SO-TO-SPEAK, RIGHT? 5033 03:15:26,160 --> 03:15:28,280 TO BE ABLE TO SAY OUR COMMUNITY 5034 03:15:28,280 --> 03:15:29,720 DOESN'T AGREE WITH FINDINGS AND 5035 03:15:29,720 --> 03:15:31,360 THIS IS WHY AND WHY THERE ARE 5036 03:15:31,360 --> 03:15:33,400 NOT CONVERSATIONS THERE AND 5037 03:15:33,400 --> 03:15:36,040 THINK THOSE ARE TO ME TWO VERY 5038 03:15:36,040 --> 03:15:38,120 PRACTICAL AND IF THIS IS A 5039 03:15:38,120 --> 03:15:41,400 PRIORITY EASY TO IMPLEMENT; 5040 03:15:41,400 --> 03:15:41,720 RIGHT? 5041 03:15:41,720 --> 03:15:43,760 WITH THE RIGHT PARTNERS AND EASY 5042 03:15:43,760 --> 03:15:46,680 TO IMPLEMENT PROCESS FOR NIH. 5043 03:15:46,680 --> 03:15:48,440 >>FANTASTIC. THANKS SO MUCH. 5044 03:15:48,440 --> 03:15:52,680 WE HAVE A QUESTION FROM ONLINE 5045 03:15:52,680 --> 03:15:55,400 AUDIE 5046 03:15:55,400 --> 03:15:55,680 AUDIENCE. 5047 03:15:55,680 --> 03:15:57,360 >>NIH AND VOICING A QUESTION 5048 03:15:57,360 --> 03:15:58,680 FROM THAT AUDIENCE. 5049 03:15:58,680 --> 03:16:00,240 THE QUESTION IS AS FOLLOWS. 5050 03:16:00,240 --> 03:16:04,000 IT IS RELATED TO PUBLIC/PRIVATE 5051 03:16:04,000 --> 03:16:06,160 PARTNERSHIP YOU TOUCHED ON. 5052 03:16:06,160 --> 03:16:07,520 REAL WORLD EVIDENCE IS BECOMING 5053 03:16:07,520 --> 03:16:09,680 MORE OF A RESOURCE USED BY 5054 03:16:09,680 --> 03:16:11,720 INDUSTRY TO SUPPORT 5055 03:16:11,720 --> 03:16:12,920 EFFECTIVENESS AND SAFETY OF 5056 03:16:12,920 --> 03:16:15,240 DRUGSES AND MEDICAL DEVICES 5057 03:16:15,240 --> 03:16:18,600 UTILIZING AI AND ML AND RESEARCH 5058 03:16:18,600 --> 03:16:19,920 COMMUNITY COLLABORATING WITH 5059 03:16:19,920 --> 03:16:23,080 INDUSTRY PROTECTING PATIENTS 5060 03:16:23,080 --> 03:16:25,880 CONFIDENTIALITY AND PRIVACY IN 5061 03:16:25,880 --> 03:16:28,080 DATA IN HANDS OF RESEARCHERS. 5062 03:16:28,080 --> 03:16:30,560 >>THANK YOU. DURING COVID-19 5063 03:16:30,560 --> 03:16:34,680 WE REALLY LEARNED ABOUT POWER OF 5064 03:16:34,680 --> 03:16:36,200 PUBLIC/PRIVATE PARTNERSHIP AND 5065 03:16:36,200 --> 03:16:38,120 POSSIBLY MOVING MORE QUICKLY 5066 03:16:38,120 --> 03:16:40,800 THAN WE HISTORICALLY THOUGHT WE 5067 03:16:40,800 --> 03:16:41,040 COULD. 5068 03:16:41,040 --> 03:16:44,400 ANYONE WANT TO TAKE THIS ON 5069 03:16:44,400 --> 03:16:49,440 FIR 5070 03:16:49,440 --> 03:16:50,680 FIRST? SGLI WILL SAY BRIEFLY 5071 03:16:50,680 --> 03:16:52,360 THAT I THINK THAT ONE OF THE 5072 03:16:52,360 --> 03:16:56,200 THINGS THAT I THINK -- I PICKED 5073 03:16:56,200 --> 03:17:00,160 UP ON IN THE COMMUNITY 5074 03:17:00,160 --> 03:17:03,320 ENGAGEMENT WAS THAT PRIVACY AND 5075 03:17:03,320 --> 03:17:04,880 CONFIDENTIALITY PER-SE ARE NOT 5076 03:17:04,880 --> 03:17:06,560 NECESSARILY GETTING AT THE HEART 5077 03:17:06,560 --> 03:17:10,120 OF WHAT PEOPLE'S CONCERNS ARE. 5078 03:17:10,120 --> 03:17:13,960 IT IS SORT OF THAT THEY 5079 03:17:13,960 --> 03:17:18,160 ACKNOWLEDGE RISKS THERE ARE TO 5080 03:17:18,160 --> 03:17:20,840 PRIVATE PRIVACY AND PARTICULARLY 5081 03:17:20,840 --> 03:17:23,000 SMALL RISKS AND IT IS REALLY 5082 03:17:23,000 --> 03:17:24,880 BALANCE OF THAT WITH THE 5083 03:17:24,880 --> 03:17:26,520 BENEFITS; RIGHT? 5084 03:17:26,520 --> 03:17:28,880 SO, I THINK, YOU KNOW, WITH ANY 5085 03:17:28,880 --> 03:17:34,520 KIND OF DATA WHETHER REAL WORLD 5086 03:17:34,520 --> 03:17:35,880 EFTDZ OR WHATEVER KIND OF DATA 5087 03:17:35,880 --> 03:17:37,760 IT IS, I THINK IT REALLY BOILS 5088 03:17:37,760 --> 03:17:40,160 DOWN TO, YOU KNOW, PEOPLE 5089 03:17:40,160 --> 03:17:42,280 UNDERSTANDING THAT THERE ARE 5090 03:17:42,280 --> 03:17:44,400 TRADEOFFS TO PRIVACY AND THEY 5091 03:17:44,400 --> 03:17:46,440 JUST NEED TO KNOW WHAT TRADEOFFS 5092 03:17:46,440 --> 03:17:46,720 ARE. 5093 03:17:46,720 --> 03:17:47,000 >>YEAH. 5094 03:17:47,000 --> 03:17:49,080 >>WELL, THEY ARE INTERESTED IN 5095 03:17:49,080 --> 03:17:51,360 BENEFIT NOT JUST FOR THEMSELVES 5096 03:17:51,360 --> 03:17:53,720 BUT FOR THEIR COMMUNITIES AS 5097 03:17:53,720 --> 03:17:54,040 WELL. 5098 03:17:54,040 --> 03:17:54,320 >>RIGHT. 5099 03:17:54,320 --> 03:17:56,280 >>IT IS A REALLY IMPORTANT 5100 03:17:56,280 --> 03:17:57,720 QUESTION THAT IS REALLY 5101 03:17:57,720 --> 03:17:59,320 COMPLICATED AND MULTI-FACETED. 5102 03:17:59,320 --> 03:18:02,120 I DON'T HAVE A QUICK 30 SECOND 5103 03:18:02,120 --> 03:18:03,280 ANSWER EXCEPT TO SAY THERE ARE 5104 03:18:03,280 --> 03:18:04,320 SOLUTIONS FOR IT. 5105 03:18:04,320 --> 03:18:06,760 SO, YOU KNOW, WHO OWNS AN 5106 03:18:06,760 --> 03:18:08,000 INDIVIDUAL'S DATA? 5107 03:18:08,000 --> 03:18:11,400 YOU ASK EACH OF US WHO OWNS OUR 5108 03:18:11,400 --> 03:18:14,480 OWN DATA AND YOU MIGHT GET 5109 03:18:14,480 --> 03:18:15,760 DIFFERENT ANSWERS. 5110 03:18:15,760 --> 03:18:17,760 CERTAINLY IF YOU ASK WHO 5111 03:18:17,760 --> 03:18:18,960 CONTROLS SHARING OF OUR 5112 03:18:18,960 --> 03:18:20,720 INDIVIDUAL DATA, THINK THAT 5113 03:18:20,720 --> 03:18:23,160 ALMOST ALL OF US WOULD SAY WE DO 5114 03:18:23,160 --> 03:18:24,400 AS INDIVIDUALS. 5115 03:18:24,400 --> 03:18:27,040 NOT ALL ORGANIZATIONS SHARE THAT 5116 03:18:27,040 --> 03:18:29,200 VIEW, INCLUDING YOUR HEALTH CARE 5117 03:18:29,200 --> 03:18:31,000 DELIVERY SYSTEM. I THINK WE 5118 03:18:31,000 --> 03:18:32,360 HAVE TO GET TO THE POINT WHERE 5119 03:18:32,360 --> 03:18:35,280 WE HAVE A BETTER UNDERSTANDING 5120 03:18:35,280 --> 03:18:39,320 OF WHO IS RESPONSIBLE FOR GIVING 5121 03:18:39,320 --> 03:18:42,560 PERMISSION AND MAKING THAT 5122 03:18:42,560 --> 03:18:44,320 SYSTEMATIC ACROSS THE COUNTRY 5123 03:18:44,320 --> 03:18:44,840 FOR EVERYBODY. 5124 03:18:44,840 --> 03:18:48,560 I THINK WE HAVE TO GET THAT DONE 5125 03:18:48,560 --> 03:18:48,760 SOON. 5126 03:18:48,760 --> 03:18:50,800 THAT WILL BE A STUMBLING BLOCK 5127 03:18:50,800 --> 03:18:53,560 FOR ANYTHING WE ARE TRYING TO DO 5128 03:18:53,560 --> 03:18:56,000 HERE. SECONDLY, INDIVIDUALS AND 5129 03:18:56,000 --> 03:18:57,520 PATIENTS AND CITIZENS AND PEOPLE 5130 03:18:57,520 --> 03:18:59,040 REALIZE THEY HAVE CONTROL OVER 5131 03:18:59,040 --> 03:19:01,520 THEIR DATA AND WHO HAS ACCESS TO 5132 03:19:01,520 --> 03:19:04,720 IT WHEN THEY REALLY KNOW THAT TO 5133 03:19:04,720 --> 03:19:07,280 BE TRUE AND SOME OF THE CONCERNS 5134 03:19:07,280 --> 03:19:11,000 FOR SOME AT LEAST START TO MELT 5135 03:19:11,000 --> 03:19:15,320 AWAY A LITTLE BIT. 5136 03:19:15,320 --> 03:19:16,840 TRADEOFF BETWEEN PRIVACY 5137 03:19:16,840 --> 03:19:19,000 CONSIDERATIONS AND BENEFITS OF 5138 03:19:19,000 --> 03:19:20,680 DATA CHANGE NOT TO EVERYBODY BUT 5139 03:19:20,680 --> 03:19:24,240 TO SAME DEGREE I CAN TELL YOU 5140 03:19:24,240 --> 03:19:25,800 FROM WORK WE ARE DONE AND OTHERS 5141 03:19:25,800 --> 03:19:28,160 THAT PATIENTS WITH ADVANCED 5142 03:19:28,160 --> 03:19:29,800 CANCER ARE NOT CONCERNED ABOUT 5143 03:19:29,800 --> 03:19:30,920 PRIVACY AND ARE MUCH MORE 5144 03:19:30,920 --> 03:19:32,840 CONCERNED ABOUT TRYING TO HELP 5145 03:19:32,840 --> 03:19:34,840 MOVE THE FIELD EVEN IF THEY KNOW 5146 03:19:34,840 --> 03:19:37,040 THEY WON'T BE AROUND TO SEE IT. 5147 03:19:37,040 --> 03:19:39,640 THEY WANT TO FEEL THAT THEY 5148 03:19:39,640 --> 03:19:42,280 CONTRIBUTED TO SOMETHING. 5149 03:19:42,280 --> 03:19:47,120 WE HEARD EARLIER ABOUT 5150 03:19:47,120 --> 03:19:49,920 INDIVIDUALS WITH RARE DISEASE 5151 03:19:49,920 --> 03:19:52,440 DIAGNOSIS AND GROUPS BEING 5152 03:19:52,440 --> 03:19:53,800 INCREDIBLY WILLING TO SHARE AND 5153 03:19:53,800 --> 03:19:55,200 DESPERATE TO SEE SOMETHING 5154 03:19:55,200 --> 03:19:56,240 HAPPEN. THERE IS PLACES TO 5155 03:19:56,240 --> 03:19:58,440 START AND MOVE THE NEEDLE AND 5156 03:19:58,440 --> 03:20:00,480 DURING COVID WE FOUND TREMENDOUS 5157 03:20:00,480 --> 03:20:02,520 INTEREST IN SHARING DATA ACROSS 5158 03:20:02,520 --> 03:20:06,280 NOT JUST INDIVIDUALS BUT ALSO 5159 03:20:06,280 --> 03:20:09,200 ORGANIZATIONS AND OTHERWISE 5160 03:20:09,200 --> 03:20:12,440 POTENTIAL OWNERS OF DATA IF THAT 5161 03:20:12,440 --> 03:20:15,400 IS THE RIGHT WORD WHO WOULD NOT 5162 03:20:15,400 --> 03:20:17,040 WORK TOGETHER ABOUT YOU KNEW 5163 03:20:17,040 --> 03:20:18,960 THEY NEED TO WORK TOGETHER IF WE 5164 03:20:18,960 --> 03:20:20,280 WILL ACHIEVE SOMETHING. 5165 03:20:20,280 --> 03:20:21,480 NOT EASY. 5166 03:20:21,480 --> 03:20:23,280 THERE IS EXAMPLES HOW YOU CAN 5167 03:20:23,280 --> 03:20:24,920 MAKE FIRST STEPS AND MAKE IT 5168 03:20:24,920 --> 03:20:26,640 WORK AND YOU CAN BUILD UPON 5169 03:20:26,640 --> 03:20:28,000 THAT. ONCE YOU SHOW SUCCESS 5170 03:20:28,000 --> 03:20:30,080 WITH THINGS I JUST SAID AND 5171 03:20:30,080 --> 03:20:31,960 OTHERS WILL RECOGNIZE SUCCESS 5172 03:20:31,960 --> 03:20:33,160 THAT WILL COME TO THEM AS WELL 5173 03:20:33,160 --> 03:20:36,600 AS BENEFITS THAT YOU HAVE TO 5174 03:20:36,600 --> 03:20:37,000 DEMONSTRATE IT. 5175 03:20:37,000 --> 03:20:39,760 >>STARTING WITH VOICES OF FOLKS 5176 03:20:39,760 --> 03:20:41,240 VERY, VERY WILLING TO SHARE 5177 03:20:41,240 --> 03:20:42,360 BECAUSE OF CURRENT CIRCUMSTANCES 5178 03:20:42,360 --> 03:20:44,640 AND FOLKS THAT ARE VERY 5179 03:20:44,640 --> 03:20:46,040 UNWILLING TO SHARE DUE TO 5180 03:20:46,040 --> 03:20:48,080 PERSONAL EXPERIENCE AND 5181 03:20:48,080 --> 03:20:49,560 HISTORICAL EXPERIENCES OF THE 5182 03:20:49,560 --> 03:20:49,880 COMMUNITIES. 5183 03:20:49,880 --> 03:20:51,080 >>I CAN'T TELL ANYBODY ELSE 5184 03:20:51,080 --> 03:20:51,560 WHAT TO DO. 5185 03:20:51,560 --> 03:20:53,320 I WILL TELL YOU WHAT I DO. I 5186 03:20:53,320 --> 03:20:56,960 START WITH COALITION OFLE FIRST. 5187 03:20:56,960 --> 03:20:59,360 I WILL TRY TO DEMONSTRATE IT 5188 03:20:59,360 --> 03:21:00,560 WORKS AND SHARE THAT SUCCESS 5189 03:21:00,560 --> 03:21:05,880 WITH OTHERS TO SEE IF WE CAN 5190 03:21:05,880 --> 03:21:07,400 CONVINCE LESS WILLING OF THE 5191 03:21:07,400 --> 03:21:08,680 BENEFIT AND QUESTION ASKED 5192 03:21:08,680 --> 03:21:11,000 EARLIER HOW DO I KNOW I WILL SEE 5193 03:21:11,000 --> 03:21:12,520 A BENEFIT SOON TO ME OF SHARING 5194 03:21:12,520 --> 03:21:14,240 MY DATA IS AN IMPORTANT QUESTION 5195 03:21:14,240 --> 03:21:16,360 AND IF WE DON'T HAVE A GOOD 5196 03:21:16,360 --> 03:21:18,040 ANSWER FOR EACH INDIVIDUAL ON 5197 03:21:18,040 --> 03:21:19,640 THAT SCORE, THEN SHAME ON US. 5198 03:21:19,640 --> 03:21:21,600 I THINK THAT -- I THINK WE NEED 5199 03:21:21,600 --> 03:21:24,560 TO GET BETTER AT DOING THAT. 5200 03:21:24,560 --> 03:21:27,120 >>MAKING THE CASE THAT THE 5201 03:21:27,120 --> 03:21:29,000 REASON THAT WE KEEP USING COVID 5202 03:21:29,000 --> 03:21:31,280 AS A EXAMPLE BUT REASON THAT 5203 03:21:31,280 --> 03:21:32,800 WORKED IS EVERYONE SAW WHAT 5204 03:21:32,800 --> 03:21:33,960 DIRECT BENEFIT WOULD BE. 5205 03:21:33,960 --> 03:21:34,880 YOU KNOW? 5206 03:21:34,880 --> 03:21:38,760 I THINK THAT IS JUST -- JUST 5207 03:21:38,760 --> 03:21:42,600 THAT UNDERSTANDING IS OBVIOUSLY 5208 03:21:42,600 --> 03:21:43,400 AN IMPORTANT PIECE. 5209 03:21:43,400 --> 03:21:45,600 >>WE ALL -- WITH COVID THOUGH 5210 03:21:45,600 --> 03:21:49,280 WE ALSO DEVELOPED A 5211 03:21:49,280 --> 03:21:52,080 TECHNOLOGICAL APPROACH THAT 5212 03:21:52,080 --> 03:21:56,320 ALLOWED US TO PROTECT PEOPLE'S 5213 03:21:56,320 --> 03:21:56,640 PRIVACY. 5214 03:21:56,640 --> 03:21:59,120 THROUGH THE -- IN TERMS OF 5215 03:21:59,120 --> 03:22:00,280 EXPOSURE NOTIFICATION APP I'M 5216 03:22:00,280 --> 03:22:01,960 THINKING ABOUT NOW AND WE DID 5217 03:22:01,960 --> 03:22:04,400 LOTS IN COVID OBVIOUSLY IN TERMS 5218 03:22:04,400 --> 03:22:06,160 OF DATA SHARING AND RESEARCH AND 5219 03:22:06,160 --> 03:22:09,560 THINGS LIKE THAT AND IF THINKING 5220 03:22:09,560 --> 03:22:12,520 ABOUT THE WILL I THINK IS NOT 5221 03:22:12,520 --> 03:22:16,120 TAKEN UP NEARLY AS MUCH AS IT 5222 03:22:16,120 --> 03:22:17,160 COULD HAVE BEEN AND AS WIDELY 5223 03:22:17,160 --> 03:22:18,920 THAT HAS TO DO WITH 5224 03:22:18,920 --> 03:22:21,120 COMMUNICATION ISSUES AND WE 5225 03:22:21,120 --> 03:22:24,520 DEVELOPED AN INFRASTRUCTURE 5226 03:22:24,520 --> 03:22:26,320 TECHNOLOGIC 5227 03:22:26,320 --> 03:22:28,360 TECHNOLOGICALLY THAT HELPED 5228 03:22:28,360 --> 03:22:30,480 REASSURE PEOPLE IF THEY 5229 03:22:30,480 --> 03:22:32,000 UNDERSTOOD IT ABOUT PRIVACY 5230 03:22:32,000 --> 03:22:33,280 PROTECTION AND BUILDING ON WHAT 5231 03:22:33,280 --> 03:22:35,160 JAY WAS SAYING IN TERMS OF 5232 03:22:35,160 --> 03:22:37,120 MOVING FORWARD IN SPACE IN TERMS 5233 03:22:37,120 --> 03:22:40,600 OF REAL WORLD EVIDENCE AND 5234 03:22:40,600 --> 03:22:46,480 RESEARCHERS ABILITY TO DO WORK 5235 03:22:46,480 --> 03:22:49,240 WITH DATA PROTECTING PRIVACY AND 5236 03:22:49,240 --> 03:22:52,640 SEVERAL LARGE TECH COMPANIES ARE 5237 03:22:52,640 --> 03:22:54,720 BUILDING AND HAVE BUILT 5238 03:22:54,720 --> 03:22:55,720 INFRASTRUCTURE FOR PEOPLE TO 5239 03:22:55,720 --> 03:22:57,680 CONTROL WHAT IS A PERSONALLY 5240 03:22:57,680 --> 03:23:01,840 CONTROLLED HEALTH RECORDS AND 5241 03:23:01,840 --> 03:23:05,080 SOME HAVE THEM ON YOUR PHONE AND 5242 03:23:05,080 --> 03:23:09,440 SO QUESTION IN MY MIND IS GIVEN 5243 03:23:09,440 --> 03:23:11,320 EVERYTHING WE LEARNED FROM 5244 03:23:11,320 --> 03:23:12,560 PARTICIPANTS IN FOCUS GROUPS 5245 03:23:12,560 --> 03:23:14,240 ABOUT TRUST AND COMMERCIAL 5246 03:23:14,240 --> 03:23:15,680 INTERACTIONS AND LACK OF TRUST 5247 03:23:15,680 --> 03:23:18,280 IN INDUSTRY AND TECHNOLOGY 5248 03:23:18,280 --> 03:23:19,960 COMPANIES IS WHY ARE WE LEAVING 5249 03:23:19,960 --> 03:23:22,040 THE PERSONALLY CONTROLLED HEALTH 5250 03:23:22,040 --> 03:23:25,760 RECORDS TO COMPANIES AND WHY 5251 03:23:25,760 --> 03:23:28,720 DON'T WE HAVE A GOVERNMENT 5252 03:23:28,720 --> 03:23:29,920 INFRASTRUCTURE FOR PEOPLE TO 5253 03:23:29,920 --> 03:23:31,520 HAVE PERSONAL HEALTH RECORDS AND 5254 03:23:31,520 --> 03:23:32,960 TO BE ABLE TO DECIDE WHO THEY 5255 03:23:32,960 --> 03:23:35,000 WANT TO SHARE IT WITH. 5256 03:23:35,000 --> 03:23:37,400 ULTIMATELY IN TERMS OF ADVANCING 5257 03:23:37,400 --> 03:23:39,720 RESEARCH WE NEED INFRASTRUCTURE 5258 03:23:39,720 --> 03:23:42,400 WHERE EACH INDIVIDUAL CONTROLS 5259 03:23:42,400 --> 03:23:43,720 OWN HEALTH INFORMATION AND THEY 5260 03:23:43,720 --> 03:23:45,120 CAN DECIDE AND THEY HAVE AGENCY 5261 03:23:45,120 --> 03:23:46,760 TO DECIDE WHO THEY WANT TO SHARE 5262 03:23:46,760 --> 03:23:47,640 THAT WITH. 5263 03:23:47,640 --> 03:23:52,040 SO, THAT IS ONE THING. PART OF 5264 03:23:52,040 --> 03:23:52,680 THE OTHER REAL WORLD EVIDENCE 5265 03:23:52,680 --> 03:23:55,680 AND RESEARCH THAT GOES BACK TO 5266 03:23:55,680 --> 03:23:58,880 THE IDEA OF PRIVACY ON DEVICES 5267 03:23:58,880 --> 03:24:00,320 AND REAL WORLD EVIDENCE AND 5268 03:24:00,320 --> 03:24:03,320 CONCEPT OF FEDERATED LEARNING 5269 03:24:03,320 --> 03:24:05,360 WHERE WE SHOULD USE THAT 5270 03:24:05,360 --> 03:24:07,080 TECHNOLOGICAL APPROACH TO 5271 03:24:07,080 --> 03:24:09,680 PROTECT PEOPLE'S PRIVACY 5272 03:24:09,680 --> 03:24:11,200 ALLOWING US TO DO RESEARCH. 5273 03:24:11,200 --> 03:24:13,080 >>OKAY. SO MUCH TO FOLLOW UP 5274 03:24:13,080 --> 03:24:15,720 ON THERE. TWO MORE PEOPLE AT 5275 03:24:15,720 --> 03:24:19,840 THE MIC OR THREE MORE AT THE MIC 5276 03:24:19,840 --> 03:24:30,280 IN THE ROOM. PLEASE IS. 5277 03:24:32,440 --> 03:24:37,960 >>THANK YOU FOR THE PANEL. 5278 03:24:37,960 --> 03:24:40,040 WE ARE HERE TODAY BECAUSE OF 5279 03:24:40,040 --> 03:24:43,640 IMPACT AND REACH IN DATA AND AI. 5280 03:24:43,640 --> 03:24:46,160 I WAS STRUCK BY WHAT YOU SAID IN 5281 03:24:46,160 --> 03:24:48,040 THE VERY BEGINNING AND YOU HEARD 5282 03:24:48,040 --> 03:24:49,160 IN FOCUS GROUPS AND WORK YOU 5283 03:24:49,160 --> 03:24:55,040 HAVE DONE WITH DEVELOPERS THAT 5284 03:24:55,040 --> 03:24:56,560 MANY I THINK YOU SAID ARE NOT 5285 03:24:56,560 --> 03:24:57,960 SURE IT IS THEIR RESPONSIBILITY 5286 03:24:57,960 --> 03:24:59,840 TO DESIGN IN A WAY THAT ACCOUNTS 5287 03:24:59,840 --> 03:25:03,600 FOR ETHICAL OR SOCIAL 5288 03:25:03,600 --> 03:25:06,960 IMPLICAT 5289 03:25:06,960 --> 03:25:07,280 IMPLICATIONS. 5290 03:25:07,280 --> 03:25:09,120 RIGHT? WE HEARD IDEAS GENERATED 5291 03:25:09,120 --> 03:25:12,720 ACROSS THE PANEL ABOUT AI ETHICS 5292 03:25:12,720 --> 03:25:14,880 BOARDS AND SOMEBODY SAID BELL 5293 03:25:14,880 --> 03:25:16,760 MONT 2.0. 5294 03:25:16,760 --> 03:25:19,000 I WANTED TO -- MILDRED YOU 5295 03:25:19,000 --> 03:25:21,280 TALKED ABOUT TRAINING AND WANT 5296 03:25:21,280 --> 03:25:24,520 TO TAKE THAT A STEP FURTHER 5297 03:25:24,520 --> 03:25:26,560 GETTING PANEL'S REACTIONS IN 5298 03:25:26,560 --> 03:25:29,760 THINKING ABOUT WAYS IN WHICH 5299 03:25:29,760 --> 03:25:31,320 TECHNOLOGY WORKERS AND 5300 03:25:31,320 --> 03:25:33,320 DEVELOPERS ARE PROFESSIONLIZED 5301 03:25:33,320 --> 03:25:35,320 AND BRINGING US TO A EXAMPLE WE 5302 03:25:35,320 --> 03:25:37,760 ARE AWARE OF AND THINKING ABOUT 5303 03:25:37,760 --> 03:25:39,320 PHYSICIANS THERE IS A SORT OF 5304 03:25:39,320 --> 03:25:40,600 SOCIAL CONTRACT IN PLACE WITH 5305 03:25:40,600 --> 03:25:44,720 RESPECT TO PHYSICIANS; RIGHT? 5306 03:25:44,720 --> 03:25:46,640 THEY OPERATE WITH AUTONOMY AND 5307 03:25:46,640 --> 03:25:49,040 PRIF WILL ENL AND PUBLIC TRUST 5308 03:25:49,040 --> 03:25:51,160 AND IN RETURN THEY TAKE 5309 03:25:51,160 --> 03:25:55,480 HIPPOCATIC OATH AND AGREE TO PUT 5310 03:25:55,480 --> 03:25:55,960 PATI 5311 03:25:55,960 --> 03:25:57,520 PATIENT'S INTERESTS AHEAD OF 5312 03:25:57,520 --> 03:26:01,320 PROFESSIONAL INTERESTS; RIGHT? 5313 03:26:01,320 --> 03:26:04,720 I'M CURIOUS. THINK THERE IS A 5314 03:26:04,720 --> 03:26:08,960 WORLD IN WHICH WE THINK AND 5315 03:26:08,960 --> 03:26:10,000 BEYOND TRAINING IN HOW DIFFERENT 5316 03:26:10,000 --> 03:26:12,560 TECHNOLOGY WORKERS ARE 5317 03:26:12,560 --> 03:26:13,640 PROFESSIONALIZED AND SHOULD WE 5318 03:26:13,640 --> 03:26:16,040 THINK ABOUT A SOCIAL CONTRACT 5319 03:26:16,040 --> 03:26:17,920 AND DEVELOPMENT OF SOCIAL 5320 03:26:17,920 --> 03:26:19,880 CONTRACT FOR WORKERS AND BECAUSE 5321 03:26:19,880 --> 03:26:22,760 OF WHERE WE ARE HERE TODAY AND 5322 03:26:22,760 --> 03:26:26,480 HOW MIGHT NIH BE INVOLVED IN 5323 03:26:26,480 --> 03:26:27,080 THAT, IF SO. 5324 03:26:27,080 --> 03:26:37,560 >>YEAH. YOU HIT IT SPOT ON. 5325 03:26:38,280 --> 03:26:40,800 MEDICINE IS A CLASSIC 5326 03:26:40,800 --> 03:26:43,560 PROFESSION. THEY HAVE FIDUCIARY 5327 03:26:43,560 --> 03:26:46,320 SDUDYS. SCIENTISTS NOT REALLY 5328 03:26:46,320 --> 03:26:47,640 ENGINEERS, MAYBE. LIKE IT IS 5329 03:26:47,640 --> 03:26:49,880 EVEN AGAINST THE LAW FOR AN 5330 03:26:49,880 --> 03:26:51,400 ENGINEER TO DO SOMETHING AGAINST 5331 03:26:51,400 --> 03:26:53,440 PUBLIC SAFETY THAT ENDANGERS 5332 03:26:53,440 --> 03:26:58,120 PUBLIC SAFETY. THEY HAVE 5333 03:26:58,120 --> 03:26:58,480 LICENSURE. 5334 03:26:58,480 --> 03:27:00,400 WE ARE TALKING ABOUT HEALTH CARE 5335 03:27:00,400 --> 03:27:02,800 AND COMPUTER SCIENTISTS AND DATA 5336 03:27:02,800 --> 03:27:05,080 SCIENTISTS AND ENGINEERS AND 5337 03:27:05,080 --> 03:27:07,680 SOFTWARE ENGINEERS WORKING IN 5338 03:27:07,680 --> 03:27:10,200 HEALTH CARE AND NEEDS TO BE A 5339 03:27:10,200 --> 03:27:11,160 DIFFERENT TYPE THINKING ABOUT 5340 03:27:11,160 --> 03:27:13,600 WHAT IT MEANS DO YOU NEED A 5341 03:27:13,600 --> 03:27:15,360 LICENSE? NO AGREEMENT WHETHER 5342 03:27:15,360 --> 03:27:17,360 SOFTWARE OR ENGINEERS SHOULD 5343 03:27:17,360 --> 03:27:18,240 HAVE LICENSES THAT ARE NOT 5344 03:27:18,240 --> 03:27:20,280 REALLY REQUIRED TO AND IF 5345 03:27:20,280 --> 03:27:21,720 WORKING IN HEALTH CARE SPACE, 5346 03:27:21,720 --> 03:27:23,640 YOU SHOULD BE. MAYBE THAT MEANS 5347 03:27:23,640 --> 03:27:26,080 YOU HAVE TO HAVE SOME SORT OF 5348 03:27:26,080 --> 03:27:27,920 CERTAIN KINDS OF TRAINING THAT 5349 03:27:27,920 --> 03:27:29,280 MEANS YOU UNDERSTAND WHAT THE 5350 03:27:29,280 --> 03:27:31,680 DIFFERENT KINDS OF RISKS ARE. 5351 03:27:31,680 --> 03:27:34,720 WHEN I TALKED TO PEOPLE AT 5352 03:27:34,720 --> 03:27:38,880 COMPANIES THAT ARE MOSTLY LED BY 5353 03:27:38,880 --> 03:27:41,160 SOFTWARE DEVELOPERS YOU PROBABLY 5354 03:27:41,160 --> 03:27:43,320 HEARD SIMILAR THINGS THEY SAY WE 5355 03:27:43,320 --> 03:27:45,520 THINK ABOUT THOSE ETHICAL THINGS 5356 03:27:45,520 --> 03:27:48,640 AT BETA TESTS AND YOU SEE WITH 5357 03:27:48,640 --> 03:27:50,840 TESLAS AND WE ARE SUBJECTS OF 5358 03:27:50,840 --> 03:27:55,480 TESLA BETA TESTS OF SELF-DRIVING 5359 03:27:55,480 --> 03:27:57,440 SOFTWARE AND THINK THERE MIGHT 5360 03:27:57,440 --> 03:28:00,920 HAVE TO BE DIFFERENT KINDS OF 5361 03:28:00,920 --> 03:28:04,680 THINKING ABOUT WORKING IN -- IN 5362 03:28:04,680 --> 03:28:09,480 APPLICATIONS HAVING TO DO WITH 5363 03:28:09,480 --> 03:28:09,800 HEALTHCARE. 5364 03:28:09,800 --> 03:28:11,920 >>I WAS GOING TO SAY THAT COMES 5365 03:28:11,920 --> 03:28:14,400 DOWN TO PIECE OF ACCOUNTABILITY 5366 03:28:14,400 --> 03:28:15,720 AND WHEN ACCOUNTABILITY 5367 03:28:15,720 --> 03:28:18,640 STRUCTURES ARE IN PLACE THAT 5368 03:28:18,640 --> 03:28:21,000 BUILDS CREDIBILITY IN TRUST. 5369 03:28:21,000 --> 03:28:24,400 >>THANK YOU. MY QUESTION I'M 5370 03:28:24,400 --> 03:28:27,360 FROM UNIVERSITY OF WISCONSIN AND 5371 03:28:27,360 --> 03:28:28,920 MOR INSTITUTE FOR RESEARCH AND 5372 03:28:28,920 --> 03:28:31,040 QUESTION FOLLOWS DIRECTLY ON 5373 03:28:31,040 --> 03:28:33,520 THAT ONE. I WAS SORT OF 5374 03:28:33,520 --> 03:28:36,200 REFLECTING ON SOMETHING JAY SAID 5375 03:28:36,200 --> 03:28:38,400 ABOUT HOW TECHNOLOGY CYCLE IS SO 5376 03:28:38,400 --> 03:28:40,320 FAST AND GOVERNANCE IS HAPPENING 5377 03:28:40,320 --> 03:28:42,640 SO MUCH SLOWER AND COMMUNITY 5378 03:28:42,640 --> 03:28:44,120 ENGAGEMENTS ARE HAPPENING SO 5379 03:28:44,120 --> 03:28:46,680 MUCH SLOWER. I WAS THINKING 5380 03:28:46,680 --> 03:28:49,480 THAT IMPLICATION IS THAT NIH AND 5381 03:28:49,480 --> 03:28:52,000 MAYBE FDA AND EVERYBODY SHOULD 5382 03:28:52,000 --> 03:28:55,320 ADJUST TO TECHNOLOGY CYCLE 5383 03:28:55,320 --> 03:28:57,880 DEVELOPING IN CONTEXT OF NOT 5384 03:28:57,880 --> 03:28:59,960 HEALTH CARE BUT TO JUST SAY; 5385 03:28:59,960 --> 03:29:00,400 RIGHT? 5386 03:29:00,400 --> 03:29:03,000 ON OTHER HAND, THERE IS A WHOLE 5387 03:29:03,000 --> 03:29:04,800 INFRASTRUCTURE FOR HOW WE 5388 03:29:04,800 --> 03:29:06,280 IMPLEMENT NEW TECHNOLOGIES INTO 5389 03:29:06,280 --> 03:29:08,080 HEALTH CARE SYSTEM PARTICULARLY 5390 03:29:08,080 --> 03:29:11,680 DRUGS AND DEVICES THAT IS NOT A 5391 03:29:11,680 --> 03:29:12,600 PERFECT SYSTEM BY FAR. 5392 03:29:12,600 --> 03:29:15,400 IT IS ALSO A SYSTEM TAKING TIME 5393 03:29:15,400 --> 03:29:17,320 AND WHY SHOULD WE NOT EXPECT 5394 03:29:17,320 --> 03:29:19,640 THAT ALGORITHM WRITERS WILL SEE 5395 03:29:19,640 --> 03:29:21,120 THEMSELVES ONCE THEY ARE IN 5396 03:29:21,120 --> 03:29:23,160 CONTEXT OF DEVELOPING THINGS FOR 5397 03:29:23,160 --> 03:29:25,640 HEALTH CARE THAT IS AS PART OF A 5398 03:29:25,640 --> 03:29:27,120 REGULATED INDUSTRY WHERE THERE 5399 03:29:27,120 --> 03:29:29,600 IS A PROCESS THAT INVOLVES MORE 5400 03:29:29,600 --> 03:29:31,800 THAN ROLL IT OUT AND BETA TEST 5401 03:29:31,800 --> 03:29:32,960 IT; RIGHT? 5402 03:29:32,960 --> 03:29:35,320 THERE IS A PREMARKET TESTING 5403 03:29:35,320 --> 03:29:37,720 THAT HAS TO ACTUALLY HAPPEN AND 5404 03:29:37,720 --> 03:29:38,800 SOME ACCOUNTABILITY TO PEOPLE 5405 03:29:38,800 --> 03:29:41,040 WHO ARE SUPPOSED TO BE THINKING 5406 03:29:41,040 --> 03:29:43,320 ABOUT, YOU KNOW, SORT OF THE 5407 03:29:43,320 --> 03:29:44,240 PUBLIC'S INTEREST. 5408 03:29:44,240 --> 03:29:46,120 SO, I JUST PUT IT OUT THERE AND 5409 03:29:46,120 --> 03:29:48,520 THINK IT FOLLOWS REALLY NICELY 5410 03:29:48,520 --> 03:29:50,320 WITH WHAT WAS JUST SAID. 5411 03:29:50,320 --> 03:29:54,720 >>THANK YOU, PILAR. ANY 5412 03:29:54,720 --> 03:29:55,640 FOLLOW-UP COMMENTS? 5413 03:29:55,640 --> 03:29:57,760 >>I THINK IT IS AN INTERESTING 5414 03:29:57,760 --> 03:30:00,280 CONCEPT THAT I THINK IS WORTH 5415 03:30:00,280 --> 03:30:01,880 EXPLORING AND WILL REMIND 5416 03:30:01,880 --> 03:30:03,720 EVERYBODY THOUGH THAT LOTS OF 5417 03:30:03,720 --> 03:30:05,960 THE WORK WILL GO ON AT A VERY 5418 03:30:05,960 --> 03:30:13,240 RAPID PACE OUTSIDE OF THE US. 5419 03:30:13,240 --> 03:30:15,480 THERE IS REALLY REALLY COMPETENT 5420 03:30:15,480 --> 03:30:18,640 PEOPLE OUTSIDE OF THE US THAT 5421 03:30:18,640 --> 03:30:21,800 WON'T BE ENCUMBERED BY US 5422 03:30:21,800 --> 03:30:23,120 REGULATIONS ROLLING OUT AND 5423 03:30:23,120 --> 03:30:24,640 DOING THINGS AND MAYBE WE CAN'T 5424 03:30:24,640 --> 03:30:28,080 DO LOTS ABOUT THAT AND MAYBE WE 5425 03:30:28,080 --> 03:30:30,400 SHOULDN'T BUT THINK FIELD WILL 5426 03:30:30,400 --> 03:30:31,760 CONTINUE TO GO FORWARD ALMOST 5427 03:30:31,760 --> 03:30:33,240 REGARDLESS OF US REGULATION. 5428 03:30:33,240 --> 03:30:35,960 MIGHT BE A PIECE OF IT. DOESN'T 5429 03:30:35,960 --> 03:30:39,560 SOLVE WHOLE PROBLEM AS FAR AS I 5430 03:30:39,560 --> 03:30:42,280 CAN SEE GOING FORWARD. 5431 03:30:42,280 --> 03:30:44,160 >>TO POINT EARLIER, DOESN'T 5432 03:30:44,160 --> 03:30:46,280 MEAN NIH CAN'T BE A LEADER. 5433 03:30:46,280 --> 03:30:48,640 >>NOT SAYING WE SHOULDN'T 5434 03:30:48,640 --> 03:30:52,560 CONSIDER DOING IT BUT IF 5435 03:30:52,560 --> 03:30:54,120 IMPLEMENTED THEN PROBLEM IS 5436 03:30:54,120 --> 03:30:54,320 SOLVED. 5437 03:30:54,320 --> 03:30:55,280 >>YES. 5438 03:30:55,280 --> 03:30:58,080 >>I THINK IT WILL CONTINUE AT 5439 03:30:58,080 --> 03:31:04,160 RAPID PACE ELSEWHERE AND 5440 03:31:04,160 --> 03:31:05,240 INCREASINGLY RAPID TO US. 5441 03:31:05,240 --> 03:31:07,240 >>I WAS GOING TO BRING YOUR 5442 03:31:07,240 --> 03:31:09,000 COMMENT BACK TO WHAT LISA SAID 5443 03:31:09,000 --> 03:31:13,320 ABOUT THE ELEMENTS OF TRUST. 5444 03:31:13,320 --> 03:31:16,240 >>COMPETENCY IS ONE AND 5445 03:31:16,240 --> 03:31:18,640 LICENSURE PARTICULARLY FOCUSES 5446 03:31:18,640 --> 03:31:21,600 ON COMPETENCY DOESN'T FOCUS ON 5447 03:31:21,600 --> 03:31:24,640 TWO ELEMENTS INTEGRITY AND 5448 03:31:24,640 --> 03:31:27,320 BENEFICENCE PARTS OF IT. 5449 03:31:27,320 --> 03:31:29,800 >>IF YOU CAN BRING THOSE 5450 03:31:29,800 --> 03:31:32,880 COMPONENTS IN YOU CAN TRY TO 5451 03:31:32,880 --> 03:31:37,840 ALIGN LICENSURE AND 5452 03:31:37,840 --> 03:31:40,840 SELF-REGULATORY ELEMENTS WITH 5453 03:31:40,840 --> 03:31:43,320 ELEMENTS OF TRUST. 5454 03:31:43,320 --> 03:31:46,440 >>GREAT. WILL YOU GET LAST 5455 03:31:46,440 --> 03:31:46,720 QUESTION. 5456 03:31:46,720 --> 03:31:50,080 >>RUPA VALDEZ UNIVERSITY OF 5457 03:31:50,080 --> 03:31:53,080 VIRGINIA FOLLOWING UP ON 5458 03:31:53,080 --> 03:31:54,320 CONVERSATION AND COUPLE TO 5459 03:31:54,320 --> 03:31:56,680 REFLECT ON PROFIT AND TRUST AND 5460 03:31:56,680 --> 03:31:57,840 COMMON GOOD AND ONE THOUGHT I 5461 03:31:57,840 --> 03:32:01,480 HAD WAS IF WE ARE FRAMING 5462 03:32:01,480 --> 03:32:04,200 RATIONALE FOR PARTICIPATION 5463 03:32:04,200 --> 03:32:06,640 AROUND IDEA OF COMMON GOOD IT IS 5464 03:32:06,640 --> 03:32:10,120 DRIVEN IN INDUSTRY SETTINGS BY 5465 03:32:10,120 --> 03:32:12,880 PROFIT-BASED MOTIVE AND HAVING 5466 03:32:12,880 --> 03:32:14,880 AI UNDERSERVED AND THINKING 5467 03:32:14,880 --> 03:32:17,200 ABOUT THAT IN WAYS WHAT IS 5468 03:32:17,200 --> 03:32:18,800 INCENTIVE FOR EXPANDING AND WHO 5469 03:32:18,800 --> 03:32:20,400 IS INVOLVE THE AND IN TERMS OF 5470 03:32:20,400 --> 03:32:22,640 AI BENEFITS AND TIE-IN TO THAT 5471 03:32:22,640 --> 03:32:24,480 IS WHAT IT MEANS FOR TRUST AND 5472 03:32:24,480 --> 03:32:26,760 COMMUNITIES AND SAYING IF THIS 5473 03:32:26,760 --> 03:32:28,240 IS FOR COMMON GOOD AND CERTAIN 5474 03:32:28,240 --> 03:32:29,440 COMMUNITIES ARE NO THE SEEING 5475 03:32:29,440 --> 03:32:31,920 BENEFIT FOR A. I OR SEEING HARM 5476 03:32:31,920 --> 03:32:35,320 HOW DO WE BUILD TRUST IN THAT 5477 03:32:35,320 --> 03:32:36,640 SPACE AND COUPLED WITH THAT IS 5478 03:32:36,640 --> 03:32:39,320 IDEA OF PROFIT I WILL THROW OUT 5479 03:32:39,320 --> 03:32:41,760 RELATED TO INNOVATION AND 5480 03:32:41,760 --> 03:32:44,680 INTELLECTUAL PROPERTY AND 5481 03:32:44,680 --> 03:32:47,320 PUSHING US TO THINK ABOUT IF 5482 03:32:47,320 --> 03:32:48,880 YOUR DATA AND BEING IS BEING 5483 03:32:48,880 --> 03:32:50,280 USED FOR DEVELOPMENT OF 5484 03:32:50,280 --> 03:32:52,600 INNOVATION WHAT IS YOUR RIGHT TO 5485 03:32:52,600 --> 03:32:55,640 OWNERSHIP FROM PROFIT STEMMING 5486 03:32:55,640 --> 03:32:58,840 FROM INNOVATION AND PUBLIC FORM 5487 03:32:58,840 --> 03:33:00,640 AND IN THAT CASE AND WHAT IT 5488 03:33:00,640 --> 03:33:02,560 MEANS IN THIS CONTEXT? 5489 03:33:02,560 --> 03:33:05,800 >>TINY LITTLE QUESTION FOR OUR 5490 03:33:05,800 --> 03:33:06,440 LAST ONE. 5491 03:33:06,440 --> 03:33:10,000 >>SO, YOU EACH HAVE ABOUT 60 5492 03:33:10,000 --> 03:33:11,800 SECONDS TO RESPOND TO WHICHEVER 5493 03:33:11,800 --> 03:33:13,680 PIECE OF THAT RESONATED MOST. 5494 03:33:13,680 --> 03:33:17,280 MAYBE I WILL START HERE. I WILL 5495 03:33:17,280 --> 03:33:18,760 GO DOWN. 5496 03:33:18,760 --> 03:33:21,320 >>I DON'T KNOW WHERE TO START 5497 03:33:21,320 --> 03:33:23,760 WITH 60 SECONDS TO BE HONEST BUT 5498 03:33:23,760 --> 03:33:27,360 THINK THEY ARE ALL REALLY 5499 03:33:27,360 --> 03:33:28,760 IMPORTANT POINTS TO CONSIDER. 5500 03:33:28,760 --> 03:33:30,960 I THINK WE HAVE TO BE CAREFUL NO 5501 03:33:30,960 --> 03:33:33,240 THE TO GIVE QUICK ANSWERS TO 5502 03:33:33,240 --> 03:33:34,960 COMPLICATED QUESTIONS AND THOSE 5503 03:33:34,960 --> 03:33:38,680 ARE REALLY THORNY. THEY DON'T 5504 03:33:38,680 --> 03:33:40,080 HAVE SIMPLE AND QUICK SOLUTIONS 5505 03:33:40,080 --> 03:33:44,720 TO PACKAGE IN A FEW SOUND BITES. 5506 03:33:44,720 --> 03:33:46,280 WON'T TRY EXCEPT TO ENCOURAGE TO 5507 03:33:46,280 --> 03:33:50,000 ADD TO LIST OF THINGS THAT NEED 5508 03:33:50,000 --> 03:33:53,240 TO BE WORKED ON AND FIGURED OUT 5509 03:33:53,240 --> 03:33:55,440 THOUGHTFULLY AND REALISTICALLY. 5510 03:33:55,440 --> 03:34:00,680 >>THANK YOU. LISA? 5511 03:34:00,680 --> 03:34:02,080 >>EXCELLENT SERIES OF QUESTIONS 5512 03:34:02,080 --> 03:34:04,440 I APOLOGIZE I DON'T HAVE A GOOD 5513 03:34:04,440 --> 03:34:06,640 ANSWER TO BUT LOOK FORWARD TO 5514 03:34:06,640 --> 03:34:09,200 CONTINUING CONVERSATION ON AND 5515 03:34:09,200 --> 03:34:11,320 ONLY THING I WOULD SAY IS THIS 5516 03:34:11,320 --> 03:34:14,720 IS A VERY COMPLEX SPACE. 5517 03:34:14,720 --> 03:34:21,120 I DON'T THINK THAT MODEL OF REN 5518 03:34:21,120 --> 03:34:25,640 REETA LAX AND HELICELLS IS 5519 03:34:25,640 --> 03:34:27,520 CLEARLY TO SPACE THAT IS 5520 03:34:27,520 --> 03:34:29,360 DEVELOPING A PRODUCT BASED ON AI 5521 03:34:29,360 --> 03:34:32,360 THAT IS GOING TO REAP A PROFIT; 5522 03:34:32,360 --> 03:34:33,120 RIGHT? 5523 03:34:33,120 --> 03:34:34,680 THERE IS SO MANY DIFFERENT STEPS 5524 03:34:34,680 --> 03:34:37,120 IN THAT PROCESS. WE CAN 5525 03:34:37,120 --> 03:34:38,880 CERTAINLY TALK ABOUT SHOULD FROM 5526 03:34:38,880 --> 03:34:41,720 AN INTELLECTUAL PROPERTY 5527 03:34:41,720 --> 03:34:42,920 PERSPECTIVE SHOULD THERE BE MORE 5528 03:34:42,920 --> 03:34:46,000 DATA SHARING AND ACCESS TO DATA 5529 03:34:46,000 --> 03:34:49,000 SO THAT WE CAN DEMOCRATIZE 5530 03:34:49,000 --> 03:34:53,320 MACHINE LEARNING IN AI. I'M A 5531 03:34:53,320 --> 03:34:54,760 BIG BELIEVER IN THINKING DEEPLY 5532 03:34:54,760 --> 03:34:57,920 ABOUT THAT ISSUE AND HOW WE CAN 5533 03:34:57,920 --> 03:34:58,360 GET THERE. 5534 03:34:58,360 --> 03:35:00,160 I DON'T THINK THERE IS -- I 5535 03:35:00,160 --> 03:35:01,600 DON'T THINK IT IS CLEAR TO SAY 5536 03:35:01,600 --> 03:35:05,480 THAT, YOU KNOW, JUST BECAUSE I 5537 03:35:05,480 --> 03:35:08,320 CONTRIBUTED DATA AT THIS STAGE I 5538 03:35:08,320 --> 03:35:12,000 SHOULD REAP BENEFIT FINANCIALLY 5539 03:35:12,000 --> 03:35:13,640 FROM AN END PRODUCT MIGHT HAVE 5540 03:35:13,640 --> 03:35:16,000 BEEN DEVELOPED 5 YEARS LATER 5541 03:35:16,000 --> 03:35:17,720 WITH MULTIPLE DATA ITERATIONS 5542 03:35:17,720 --> 03:35:19,520 THAT IS A VERY COMPLICATED 5543 03:35:19,520 --> 03:35:20,520 PROCESS THAT I DON'T KNOW THAT 5544 03:35:20,520 --> 03:35:25,120 WE FIGURED IT OUT OR NEED TO 5545 03:35:25,120 --> 03:35:26,560 TEASE IT APART TO CLARIFY THAT 5546 03:35:26,560 --> 03:35:28,600 AND WE HAVE TO GET AT WHAT IS 5547 03:35:28,600 --> 03:35:29,520 THAT? 5548 03:35:29,520 --> 03:35:31,360 WILL IT REALLY SATISFY PEOPLE? 5549 03:35:31,360 --> 03:35:33,440 NOT AS CONVINCED IN TERMS OF, 5550 03:35:33,440 --> 03:35:35,560 YOU KNOW, HOW MUCH WE SHOULD PAY 5551 03:35:35,560 --> 03:35:37,040 PEOPLE FOR DIFFERENT PARTS OF 5552 03:35:37,040 --> 03:35:38,640 THEIR DATA THAT ARE GOING INTO 5553 03:35:38,640 --> 03:35:40,760 THE DEVELOPMENT OF A PRODUCT AND 5554 03:35:40,760 --> 03:35:42,600 IF PEOPLE ARE GOING TO FIND IT 5555 03:35:42,600 --> 03:35:44,120 SATISFYING IF IN WAY THAT THEY 5556 03:35:44,120 --> 03:35:47,600 MIGHT ANTICIPATE THEY ARE. SO, 5557 03:35:47,600 --> 03:35:49,080 DIFFICULT QUESTION THAT I'M 5558 03:35:49,080 --> 03:35:50,920 SORRY DON'T HAVE GOOD ANSWERS. 5559 03:35:50,920 --> 03:35:53,160 >>PUTTING OUT THERE QUICKLY 5560 03:35:53,160 --> 03:35:53,880 INTERESTING CONVERSATIONS GOING 5561 03:35:53,880 --> 03:35:57,520 AROUND BENEFIT SHARING WITH 5562 03:35:57,520 --> 03:35:59,280 NEGOYA RIGHT NOW THAT MIGHT BE 5563 03:35:59,280 --> 03:36:00,720 USEFUL TO THINK ABOUT. 5564 03:36:00,720 --> 03:36:01,360 >>MILDRED? 5565 03:36:01,360 --> 03:36:05,040 >>I MEAN, OBVIOUSLY NO GOOD 5566 03:36:05,040 --> 03:36:05,320 ANSWERS. 5567 03:36:05,320 --> 03:36:07,160 WE HAVE SOME PRECEDENT TO LOOK 5568 03:36:07,160 --> 03:36:09,240 AT IN TERMS OF PHARMACEUTICALS, 5569 03:36:09,240 --> 03:36:10,640 FOR EXAMPLE. 5570 03:36:10,640 --> 03:36:12,880 THAT IS A FOR PROFIT LARGELY FOR 5571 03:36:12,880 --> 03:36:14,440 PROFIT EXERCISE THAT IS NOT VERY 5572 03:36:14,440 --> 03:36:17,840 -- I MEAN, IT IS MESSED UP IF 5573 03:36:17,840 --> 03:36:20,240 YOU LOOK AT INSULIN PRICES, FOR 5574 03:36:20,240 --> 03:36:20,760 EXAMPLE P. 5575 03:36:20,760 --> 03:36:23,080 WHAT WE HAVE RELIED ON TO KIND 5576 03:36:23,080 --> 03:36:25,840 OF MITIGATE CONFLICT OF INTEREST 5577 03:36:25,840 --> 03:36:28,240 IS VERY HEAVY SCRUTINY ON SORT 5578 03:36:28,240 --> 03:36:31,800 OF THE SAFETY AND EFFICACY 5579 03:36:31,800 --> 03:36:33,600 ASPECTS OF PRODUCT AND WHERE WE 5580 03:36:33,600 --> 03:36:35,520 NEED TO PUT ATTENTION INTO THAT 5581 03:36:35,520 --> 03:36:37,560 SO THAT RECOGNIZING THAT THERE 5582 03:36:37,560 --> 03:36:39,160 IS CONFLICTS OF INTEREST THERE 5583 03:36:39,160 --> 03:36:41,800 AND THEY ARE FINANCIAL CONFLICTS 5584 03:36:41,800 --> 03:36:44,200 OF INTEREST THAT EVEN IF WE 5585 03:36:44,200 --> 03:36:45,720 CAN'T COMPLETELY ELIMINATE THEM 5586 03:36:45,720 --> 03:36:48,960 WE CAN MITIGATE THEM BY FOCUSING 5587 03:36:48,960 --> 03:36:51,280 ATTENTION ON POTENTIAL -- 5588 03:36:51,280 --> 03:36:54,240 HEADING OFF BAD -- POTENTIALLY 5589 03:36:54,240 --> 03:36:56,480 BAD IMPACT OF CONFLICT OF 5590 03:36:56,480 --> 03:36:56,720 INTEREST. 5591 03:36:56,720 --> 03:36:59,000 >>I WILL ADD AND GIVE MONICA 5592 03:36:59,000 --> 03:37:02,200 LAST WORD THAT SAFETY AND 5593 03:37:02,200 --> 03:37:03,240 EFFICACY ARE INDIVIDUAL LEVEL 5594 03:37:03,240 --> 03:37:03,720 CONCERNS. 5595 03:37:03,720 --> 03:37:05,320 WE HEARD FROM FOLKS WE TALKED 5596 03:37:05,320 --> 03:37:07,440 WITH THEY ARE ALSO CONCERNED 5597 03:37:07,440 --> 03:37:09,560 ABOUT COMMUNITY AND COLLECTIVE 5598 03:37:09,560 --> 03:37:10,800 BENEFIT; RIGHT? 5599 03:37:10,800 --> 03:37:12,880 WE DON'T HAVE POLICY MECHANISMS 5600 03:37:12,880 --> 03:37:15,440 TO ADDRESS POPULATION LEVEL 5601 03:37:15,440 --> 03:37:16,080 IMPACTS. 5602 03:37:16,080 --> 03:37:16,520 >>RIGHT. 5603 03:37:16,520 --> 03:37:17,960 >>ALSO, BROAD SOCIAL. 5604 03:37:17,960 --> 03:37:18,640 >>YEAH. 5605 03:37:18,640 --> 03:37:19,560 >>IMPACTS. 5606 03:37:19,560 --> 03:37:22,520 >>I THINK TO THE COMMUNITY 5607 03:37:22,520 --> 03:37:24,600 BENEFIT PIECE AND MAYBE IN 5608 03:37:24,600 --> 03:37:27,640 RESPONSE TO WHAT LISA SHARED, 5609 03:37:27,640 --> 03:37:29,560 YOU KNOW, VERSUS WELL AN 5610 03:37:29,560 --> 03:37:31,640 INDIVIDUAL FEELING GOOD IF THEY 5611 03:37:31,640 --> 03:37:34,400 GRANTED THIS MONEY FOR A PRODUCT 5612 03:37:34,400 --> 03:37:36,720 TYPE OF THING AND THAT PIECE OF 5613 03:37:36,720 --> 03:37:38,400 COMMUNITY BENEFIT AND TYING TO 5614 03:37:38,400 --> 03:37:39,880 YOUR FIRST QUESTION YOU 5615 03:37:39,880 --> 03:37:41,160 MENTIONED AI COMMUNITY AND KNOW 5616 03:37:41,160 --> 03:37:43,760 FROM CONVERSATIONS WE HAD 5617 03:37:43,760 --> 03:37:47,120 LOOKING AT SOME OF THE 5618 03:37:47,120 --> 03:37:48,360 COMMUNITIES THAT ORGANIZATIONS 5619 03:37:48,360 --> 03:37:49,920 REPRESENTING COMMUNITIES I THINK 5620 03:37:49,920 --> 03:37:53,600 ONE PIECE I WOULD LEAVE US WITH 5621 03:37:53,600 --> 03:37:57,520 IS THINKING ABOUT THERE IS A 5622 03:37:57,520 --> 03:37:59,120 REAL VOCALIZATION OF IMPORTANCE 5623 03:37:59,120 --> 03:38:01,040 OF ACKNOWLEDGING KNOWLEDGE THAT, 5624 03:38:01,040 --> 03:38:03,320 THAT COMMUNITY HAS ABOUT ITSELF 5625 03:38:03,320 --> 03:38:06,480 AND ITS OWN HEALTH. 5626 03:38:06,480 --> 03:38:11,320 SO, I -- YOU KNOW, THERE IS A 5627 03:38:11,320 --> 03:38:13,320 PRESUPO SIGNIFICANCES THAT WE 5628 03:38:13,320 --> 03:38:14,560 APPROACHED EVEN IN THIS 5629 03:38:14,560 --> 03:38:16,160 PARTICULAR CONVENING TO CERTAIN 5630 03:38:16,160 --> 03:38:17,840 POPULATIONS ABOUT HOW TO 5631 03:38:17,840 --> 03:38:18,880 APPROACH THIS PROCESS. 5632 03:38:18,880 --> 03:38:22,520 AND I THINK THAT IS WHERE THERE 5633 03:38:22,520 --> 03:38:25,400 IS OPPORTUNITY FOR, YOU KNOW, IN 5634 03:38:25,400 --> 03:38:27,160 -- WHERE THERE IS OPPORTUNITY 5635 03:38:27,160 --> 03:38:28,440 FOR THAT INVOLVEMENT. 5636 03:38:28,440 --> 03:38:32,400 IT IS SPECIFICALLY TYING TO 5637 03:38:32,400 --> 03:38:34,040 COMMUNITY BENEFIT PIECE AND 5638 03:38:34,040 --> 03:38:35,080 SEEING ABILITY FOR WHATEVER TYPE 5639 03:38:35,080 --> 03:38:37,640 OF RESEARCH TO ACTUALLY HAVE 5640 03:38:37,640 --> 03:38:39,520 BEEN INFORMED BY COMMUNITIES OF 5641 03:38:39,520 --> 03:38:41,760 WHAT IS THE VALUE SET AND WHAT 5642 03:38:41,760 --> 03:38:45,560 IS IMPORTANT AND HERE IS WHAT WE 5643 03:38:45,560 --> 03:38:47,200 ALREADY KNOW THAT IS A PIECE, 5644 03:38:47,200 --> 03:38:48,520 IMPORTANT PIECE OF THIS, YOU 5645 03:38:48,520 --> 03:38:50,720 KNOW, WHAT WE ARE TRYING TO 5646 03:38:50,720 --> 03:38:52,480 ADDRESS AND AT BACK END OF IT, 5647 03:38:52,480 --> 03:38:54,560 THEN WHAT IS -- WHAT ARE 5648 03:38:54,560 --> 03:38:56,120 TANGIBLE COMPONENTS THAT MIGHT 5649 03:38:56,120 --> 03:38:58,000 BE MONETARY AND MIGHT BE IN 5650 03:38:58,000 --> 03:39:01,440 OTHER -- MIGHT BE IN POLICIES OR 5651 03:39:01,440 --> 03:39:03,240 SERVICES OR OTHER GOVERNMENT, 5652 03:39:03,240 --> 03:39:06,160 YOU KNOW, INFRASTRUCTURE THAT IS 5653 03:39:06,160 --> 03:39:08,360 BUILT THAT THEN BENEFITS 5654 03:39:08,360 --> 03:39:09,800 COMMUNITY DIRECTLY. I THINK 5655 03:39:09,800 --> 03:39:11,480 THAT IS AN OPPORTUNITY THAT I 5656 03:39:11,480 --> 03:39:13,560 HOPE TO SEE COME OUT OF THIS. 5657 03:39:13,560 --> 03:39:15,280 >>YEAH. 5658 03:39:15,280 --> 03:39:16,280 >>WONDERFUL. 5659 03:39:16,280 --> 03:39:18,360 BEFORE I THANK THE PANEL, I WANT 5660 03:39:18,360 --> 03:39:20,640 TO LET THE ONLINE AUDIENCE KNOW 5661 03:39:20,640 --> 03:39:22,640 THERE IS NO BREAK BETWEEN THIS 5662 03:39:22,640 --> 03:39:24,080 PANEL AND PANEL 3. WE WILL TAKE 5663 03:39:24,080 --> 03:39:26,400 5 MINUTES TO TRANSITION AND 5664 03:39:26,400 --> 03:39:29,000 PANEL 3 FOLKS CAN COME UP. IN 5665 03:39:29,000 --> 03:39:31,080 MEANTIME, I WANT TO THANK ALL OF 5666 03:39:31,080 --> 03:39:32,600 YOU SO VERY MUCH NOT ONLY FOR 5667 03:39:32,600 --> 03:39:34,320 BEING HERE AND FOR YOUR 5668 03:39:34,320 --> 03:39:37,240 THOUGHTFUL COMMENTS. 5669 03:39:37,240 --> 03:39:38,040 >>THANK YOU. 5670 03:39:38,040 --> 03:41:41,680 >>[APPLAUSE]. 5671 03:41:41,680 --> 03:41:50,120 >>>>ALL RIGHT. IF WE CAN HAVE 5672 03:41:50,120 --> 03:41:55,320 QUESTIONS AT THIS E-MAIL 5673 03:41:55,320 --> 03:41:59,120 AT NIH AND IF WE CAN HAVE THE 5674 03:41:59,120 --> 03:42:02,720 NEXT SLIDE, PLEASE. 5675 03:42:02,720 --> 03:42:06,880 SO, SCENARIOS IN ENGAGEMENTS 5676 03:42:06,880 --> 03:42:09,600 FOCUSING PARTICULARLY ON -- 5677 03:42:09,600 --> 03:42:13,600 PARTICULARLY FOCUSED ON DATA 5678 03:42:13,600 --> 03:42:22,160 LINKAGE AND SOME SCENARIOS AND 5679 03:42:22,160 --> 03:42:25,440 PURPOSE WAS TO CONTEXTUALIZE 5680 03:42:25,440 --> 03:42:27,000 GETTING PUBLIC FEED BACK ABOUT 5681 03:42:27,000 --> 03:42:30,520 SOME REALISTIC OR SORT OF 5682 03:42:30,520 --> 03:42:31,680 REALISTIC SITUATIONS IN WHICH 5683 03:42:31,680 --> 03:42:33,440 RESEARCH WOULD BE CONDUCTED AND 5684 03:42:33,440 --> 03:42:35,760 THEIR DATA WOULD BE LINKED. 5685 03:42:35,760 --> 03:42:40,560 AND SO IF WE CAN HAVE THE NEXT 5686 03:42:40,560 --> 03:42:44,920 SLIDE. 5687 03:42:44,920 --> 03:42:47,840 ISSUES COMING OUT, RIGHT, 5688 03:42:47,840 --> 03:42:49,720 PARTICIPANTS ARE SKEPTICAL ABOUT 5689 03:42:49,720 --> 03:42:52,880 DATA LINKAGE ALONG NUMBERS OF 5690 03:42:52,880 --> 03:42:53,720 DIFFERENT DIMENSIONS AND WILL 5691 03:42:53,720 --> 03:42:57,280 ASK RONNIE TO EXPAND ON THAT 5692 03:42:57,280 --> 03:43:00,520 POINT A LITTLE BIT. 5693 03:43:00,520 --> 03:43:03,320 THEY SUPPORTED DOING OF DATA 5694 03:43:03,320 --> 03:43:07,120 LINKAGE OF A VARIETY OF WAYS 5695 03:43:07,120 --> 03:43:08,720 PARTICULARLY THOUGH WHEN IT WAS 5696 03:43:08,720 --> 03:43:11,680 FOCUSED ON RESEARCH THAT COULD 5697 03:43:11,680 --> 03:43:13,200 IMPROVE HEALTH. 5698 03:43:13,200 --> 03:43:15,000 FINALLY, THEY WERE -- AS WE HAVE 5699 03:43:15,000 --> 03:43:18,760 HEARD IN OTHER CONTEXTS, THEY 5700 03:43:18,760 --> 03:43:23,640 WERE PRETTY WEARY OF COMMERCIAL 5701 03:43:23,640 --> 03:43:24,920 A- ASPECTS OF THIS AND 5702 03:43:24,920 --> 03:43:26,560 POSSIBILITY THAT COMMERCIAL 5703 03:43:26,560 --> 03:43:28,240 ENTITIES WOULD HAVE ACCESS TO 5704 03:43:28,240 --> 03:43:32,040 LINKED DATA OR BE INVOLVED IN 5705 03:43:32,040 --> 03:43:35,280 LINK 5706 03:43:35,280 --> 03:43:35,520 LINKING. 5707 03:43:35,520 --> 03:43:37,240 WHICH IS INTERESTING BECAUSE OF 5708 03:43:37,240 --> 03:43:40,200 COURSE IN MANY CASES AS 5709 03:43:40,200 --> 03:43:41,000 BIOMEDICAL RESEARCHERS OR 5710 03:43:41,000 --> 03:43:43,160 PUBLICLY FUNDED RESEARCHERS WE 5711 03:43:43,160 --> 03:43:45,120 MIGHT GET DATA FROM COMMERCIAL 5712 03:43:45,120 --> 03:43:50,080 ENTITY TO DO THAT LINKAGE. 5713 03:43:50,080 --> 03:43:55,320 NONETHELESS, ROLE OF COMMERCIAL 5714 03:43:55,320 --> 03:43:58,880 ENTITIES IN THIS WERE RAISING 5715 03:43:58,880 --> 03:44:00,560 CONCERNS FOR PEOPLE. 5716 03:44:00,560 --> 03:44:02,080 OUR FIRST QUESTION IN ALL OF THE 5717 03:44:02,080 --> 03:44:05,240 PANELS IS SORT OF TO ASK OUR 5718 03:44:05,240 --> 03:44:07,120 PARTICIPANTS OR PANELISTS RATHER 5719 03:44:07,120 --> 03:44:09,960 THEIR INITIAL IMPRESSIONS AND 5720 03:44:09,960 --> 03:44:11,560 ANYTHING THAT SURPRISED YOU. I 5721 03:44:11,560 --> 03:44:14,280 GUESS I WOULD START WITH RONNIE. 5722 03:44:14,280 --> 03:44:15,480 I WOULD EXPAND ALSO AND ASK YOU 5723 03:44:15,480 --> 03:44:18,000 IF YOU CAN SAY A LITTLE MORE 5724 03:44:18,000 --> 03:44:20,920 ABOUT WHAT -- HOW SOME 5725 03:44:20,920 --> 03:44:24,800 SKEPTICISM ABOUT DATA LINKAGE 5726 03:44:24,800 --> 03:44:25,080 MANIFESTED. 5727 03:44:25,080 --> 03:44:25,520 >>HAPPY TO. 5728 03:44:25,520 --> 03:44:28,600 FIRST OF ALL, THANK YOU, PILAR. 5729 03:44:28,600 --> 03:44:30,840 WE ARE TOGETHER AT A COMMUNITY 5730 03:44:30,840 --> 03:44:32,200 CONVERSATION AND GOOD TO SEE YOU 5731 03:44:32,200 --> 03:44:33,520 AGAIN AND THANK YOU TO THE 5732 03:44:33,520 --> 03:44:36,360 OFFICE OF SCIENCE POLICY FOR 5733 03:44:36,360 --> 03:44:37,800 INVITING PYXIS TEAM TO BE PART 5734 03:44:37,800 --> 03:44:39,960 OF THE PROJECT AND WE LEARNED A 5735 03:44:39,960 --> 03:44:41,720 TON THAT HAS BEEN REALLY 5736 03:44:41,720 --> 03:44:43,880 GRATIFYING TO BE PART OF THIS 5737 03:44:43,880 --> 03:44:44,120 PROCESS. 5738 03:44:44,120 --> 03:44:45,800 THANK YOU FOR THE OPPORTUNITY TO 5739 03:44:45,800 --> 03:44:47,360 BE HERE TODAY TO BRING VOICES OF 5740 03:44:47,360 --> 03:44:50,040 THOSE WE ENGAGED WITH TO THIS 5741 03:44:50,040 --> 03:44:51,120 CONVERSATION AND TO THAT POINT I 5742 03:44:51,120 --> 03:44:54,600 THINK IT HAS BEEN A LONG DAY. 5743 03:44:54,600 --> 03:44:58,320 I WANT TO REMIND PEOPLE OF 5744 03:44:58,320 --> 03:44:59,040 PERSPECTIVES COLBY AND MONICA 5745 03:44:59,040 --> 03:45:02,160 AND MYSELF WILL TALK ABOUT ON 5746 03:45:02,160 --> 03:45:04,440 THIS PANEL AND REMINDING PEOPLE 5747 03:45:04,440 --> 03:45:06,680 THAT WE WORKED IN PARTNERSHIP 5748 03:45:06,680 --> 03:45:08,600 WITH OFFICE OF SCIENCE POLICY 5749 03:45:08,600 --> 03:45:10,480 AND WORKING GROUP OVER FOUR 5750 03:45:10,480 --> 03:45:11,920 MONTHS AND WENT TO 6 LOCATIONS 5751 03:45:11,920 --> 03:45:14,400 AROUND THE COUNTRY AND DID A 5752 03:45:14,400 --> 03:45:16,960 HANDFUL OF WEBINARS SPEAKING 5753 03:45:16,960 --> 03:45:20,280 WITH ABOUT 160 PEOPLE AND THOSE 5754 03:45:20,280 --> 03:45:21,560 WERE 160 PEOPLE. 5755 03:45:21,560 --> 03:45:24,680 THEY WERE NOT REFLECTIVE OF 5756 03:45:24,680 --> 03:45:27,040 COMMUNITIES BUT REFLECTIVE OF 5757 03:45:27,040 --> 03:45:28,160 THEMSELVES; RIGHT? 5758 03:45:28,160 --> 03:45:30,160 WE LITERALLY SCRATCHED THE 5759 03:45:30,160 --> 03:45:31,800 SURFACE. I THINK THAT WE WILL 5760 03:45:31,800 --> 03:45:33,960 BRING WHAT WE HEARD AND WE ARE 5761 03:45:33,960 --> 03:45:35,480 BRINGING WHAT WE HEARD. 5762 03:45:35,480 --> 03:45:38,440 THERE IS SO MUCH MORE WORK TO BE 5763 03:45:38,440 --> 03:45:40,440 DONE. THAT CAME UP IN THE FIRST 5764 03:45:40,440 --> 03:45:42,080 AND SECOND PANEL. WE WILL HEAR 5765 03:45:42,080 --> 03:45:44,440 AGAIN IN CONVERSATIONS AND IS A 5766 03:45:44,440 --> 03:45:47,000 GOOD REMINDER CLOSING OUT 5767 03:45:47,000 --> 03:45:49,800 CONVERSATIONS WITH THIS THIRD 5768 03:45:49,800 --> 03:45:51,280 PANEL THAT WE CERTAINLY DIDN'T 5769 03:45:51,280 --> 03:45:52,400 HEAR FROM ANYBODY. WE HEARD 5770 03:45:52,400 --> 03:45:55,760 FROM A DIVERSITY OF VOICES AND 5771 03:45:55,760 --> 03:45:57,680 COMMUNITIES BUT LITERALLY JUST 5772 03:45:57,680 --> 03:46:00,080 SCRATCHED THE SURFACE. I 5773 03:46:00,080 --> 03:46:02,200 THOUGHT I WOULD START -- I KNOW 5774 03:46:02,200 --> 03:46:04,800 WE WILL HAVE A LONGER 5775 03:46:04,800 --> 03:46:05,800 CONVERSATION. I HAVE 5776 03:46:05,800 --> 03:46:07,760 FOUR-POINTS I WANTED TO MAKE TO 5777 03:46:07,760 --> 03:46:09,680 PROVIDE CONTEXT TO THE 5778 03:46:09,680 --> 03:46:10,360 CONVERSATION. 5779 03:46:10,360 --> 03:46:12,880 SO, ONE, YOU KNOW, THIS TOPIC 5780 03:46:12,880 --> 03:46:15,680 AROUND DATA LINKAGE. 5781 03:46:15,680 --> 03:46:19,080 IT WAS THE MOST CHALLENGING, I 5782 03:46:19,080 --> 03:46:26,040 WOULD SAY IN TERMS OF EXPLAINING 5783 03:46:26,040 --> 03:46:28,920 CONCEPTS TO DIFFERENT COMMUNITY 5784 03:46:28,920 --> 03:46:30,240 MEMBERS WE SPOKE WITH AND WE 5785 03:46:30,240 --> 03:46:32,520 USED CASE STUDY AND CREATED YOU 5786 03:46:32,520 --> 03:46:35,400 SEE A SNAPSHOT HERE IN YOUR 5787 03:46:35,400 --> 03:46:39,800 PACKET AS WELL AND CREATED USING 5788 03:46:39,800 --> 03:46:40,680 INFOGRAPHICS THAT IS DIFFERENT 5789 03:46:40,680 --> 03:46:43,040 TO WAY WE PRESENTED THESE TOPIC 5790 03:46:43,040 --> 03:46:44,840 AREAS AND OTHER WAY THIS WAS 5791 03:46:44,840 --> 03:46:47,120 DIFFERENT WAS IN FIRST TWO TOPIC 5792 03:46:47,120 --> 03:46:50,880 AREAS WE HAD TWO DIFFERENT CASE 5793 03:46:50,880 --> 03:46:51,920 STUDIES WE VARIED. 5794 03:46:51,920 --> 03:46:53,800 COMMUNITY CASE STUDIES WE USED 5795 03:46:53,800 --> 03:46:56,240 WE USED ONE AND IN SOME WE USE 5796 03:46:56,240 --> 03:46:58,120 THE OTHER AND WE ALTERNATED. 5797 03:46:58,120 --> 03:47:00,200 THIS WAS A CONSTANT AND WE USE 5798 03:47:00,200 --> 03:47:03,120 SAME CASE STUDY IN INFOGRAPHIC 5799 03:47:03,120 --> 03:47:05,960 ACROSS ALL CONVERSATIONS WE HAD 5800 03:47:05,960 --> 03:47:08,200 AND OTHER WAY THIS WAS DIFFERENT 5801 03:47:08,200 --> 03:47:11,520 IS THIS IS A VERITIERATIVE 5802 03:47:11,520 --> 03:47:12,800 PROCESS AND IS IMPORTANT TO NOTE 5803 03:47:12,800 --> 03:47:15,080 THAT. WE LEARNED A LOT WHEN -- 5804 03:47:15,080 --> 03:47:17,480 FROM FIRST CONVERSATION WE HAD 5805 03:47:17,480 --> 03:47:20,680 IN HARLEM UNTIL THE LAST ONE WE 5806 03:47:20,680 --> 03:47:20,920 HAD. 5807 03:47:20,920 --> 03:47:24,480 WE REALIZED WE WOULD DO A 5808 03:47:24,480 --> 03:47:28,280 DEBRIEF WITH TEAM AND WITH NIH 5809 03:47:28,280 --> 03:47:28,680 TEAM. 5810 03:47:28,680 --> 03:47:29,920 WHAT DID WE LEARN AND WHAT 5811 03:47:29,920 --> 03:47:32,640 WORKED WELL AND WHAT WE CAN 5812 03:47:32,640 --> 03:47:34,720 ADJUST. EVERY TIME WE HAD 5813 03:47:34,720 --> 03:47:35,880 CONVERSATIONS WE CHANGE THINGS 5814 03:47:35,880 --> 03:47:39,920 UP A LITTLE BIT BASED ON WHAT WE 5815 03:47:39,920 --> 03:47:40,200 LEARNED. 5816 03:47:40,200 --> 03:47:42,400 PART OF WHAT WE CHANGED UP WE 5817 03:47:42,400 --> 03:47:44,920 TRIED TO IDENTIFY PLACES WHERE 5818 03:47:44,920 --> 03:47:46,160 COMMUNITY MEMBER SEEMS TO GET 5819 03:47:46,160 --> 03:47:48,960 STUCK IN TERMS OF HOW WE EXPLAIN 5820 03:47:48,960 --> 03:47:51,360 THE PROCESS AND HOW LINKAGE 5821 03:47:51,360 --> 03:47:51,600 WORKED. 5822 03:47:51,600 --> 03:47:53,760 IT WAS REALLY INTERESTING. 5823 03:47:53,760 --> 03:47:55,480 SO, WE WENT THROUGH A NUMBER OF 5824 03:47:55,480 --> 03:47:58,120 VERSIONS THAT ARE IN TERMS OF 5825 03:47:58,120 --> 03:47:59,680 INFOGRAPHIC AND EXPLAINING IT. 5826 03:47:59,680 --> 03:48:02,200 I THINK THAT WHAT IT TAUGHT US 5827 03:48:02,200 --> 03:48:03,520 IS THAT THERE IS SOMETHING THAT 5828 03:48:03,520 --> 03:48:05,320 JEN YOU BROUGHT UP IN YOUR 5829 03:48:05,320 --> 03:48:08,360 PANEL. IT WAS THAT WE WERE 5830 03:48:08,360 --> 03:48:09,560 INTRODUCING ASSUMPTIONS. 5831 03:48:09,560 --> 03:48:13,440 IN THE CASE STUDY AND IN TERMS 5832 03:48:13,440 --> 03:48:16,880 OF WHAT PEOPLE UNDERSTOOD AND 5833 03:48:16,880 --> 03:48:17,960 HOW THEY THOUGHT ABOUT THINGS 5834 03:48:17,960 --> 03:48:20,600 AND REALIZED THAT WE NEEDED TO 5835 03:48:20,600 --> 03:48:22,240 EITHER BACK UP A LITTLE BIT OR 5836 03:48:22,240 --> 03:48:24,200 EXPLAIN THINGS IN A DIFFERENT 5837 03:48:24,200 --> 03:48:24,400 WAY. 5838 03:48:24,400 --> 03:48:26,800 I THINK THAT IS IMPORTANT IN 5839 03:48:26,800 --> 03:48:31,360 TERMS OF CONTEXTUALIZING THIS 5840 03:48:31,360 --> 03:48:31,720 TOPIC. 5841 03:48:31,720 --> 03:48:33,840 SECOND THING WE HEARD IN A 5842 03:48:33,840 --> 03:48:36,480 NUMBER OF CONVERSATIONS WAS THAT 5843 03:48:36,480 --> 03:48:38,320 EVEN THOUGH THE PARTICIPANTS IN 5844 03:48:38,320 --> 03:48:41,160 THIS PARTICULAR CASE STUDY, 5845 03:48:41,160 --> 03:48:43,040 REACTION WAS THAT EVEN THOUGH 5846 03:48:43,040 --> 03:48:44,360 SOMEBODY MIGHT HAVE CONCEPTED 5847 03:48:44,360 --> 03:48:48,040 FOR DATA TO BE USED IN FUTURE 5848 03:48:48,040 --> 03:48:49,600 STUDIES AND THAT IS TO JAY'S 5849 03:48:49,600 --> 03:48:52,040 POINT WHO TERRIFIED ME, BY THE 5850 03:48:52,040 --> 03:48:53,880 WAY, BY WHAT YOU SAID. 5851 03:48:53,880 --> 03:48:55,960 BY TIME WE ARE DONE WITH THIS 5852 03:48:55,960 --> 03:48:57,920 CONVERSATION WE WILL BE IN NEXT 5853 03:48:57,920 --> 03:48:59,280 GENERATION OF TECHNOLOGY AND BY 5854 03:48:59,280 --> 03:49:01,560 TIME WE LEAVE THIS ROOM, EVEN 5855 03:49:01,560 --> 03:49:03,280 THOUGH PARTICIPANTS IN CASE 5856 03:49:03,280 --> 03:49:06,320 STUDY CONSENTED FOR INFORMATION 5857 03:49:06,320 --> 03:49:09,800 TO BE USED IN FUTURE STUDIES, 5858 03:49:09,800 --> 03:49:11,920 TECHNOLOGY IS EVOLVING SO 5859 03:49:11,920 --> 03:49:13,600 QUICKLY, THEY ARE NOT EVEN SURE 5860 03:49:13,600 --> 03:49:15,400 WHAT IT IS THEY ARE CONSENTING 5861 03:49:15,400 --> 03:49:17,320 TO. 5862 03:49:17,320 --> 03:49:19,200 SO, YOU KNOW, SOME NOTED THERE 5863 03:49:19,200 --> 03:49:21,720 IS A POINT IN TIME IN WHICH 5864 03:49:21,720 --> 03:49:23,680 SOMEBODY CIRCLES BACK TO THEM TO 5865 03:49:23,680 --> 03:49:25,600 EXPLAIN WHAT IT IS THEY ARE 5866 03:49:25,600 --> 03:49:27,320 ACTUALLY CONSENTING TO. 5867 03:49:27,320 --> 03:49:30,840 BECAUSE, YOU KNOW, EVERYTHING IS 5868 03:49:30,840 --> 03:49:32,760 MOVING SO QUICKLY. 5869 03:49:32,760 --> 03:49:35,760 YOU KNOW, THERE IS A QUOTE 5870 03:49:35,760 --> 03:49:36,720 TALKING INTERNALLY AS A TEAM 5871 03:49:36,720 --> 03:49:38,880 THAT WE ARE PREPARING FOR THIS 5872 03:49:38,880 --> 03:49:41,600 CONVERSATION WE PULLED OUT. 5873 03:49:41,600 --> 03:49:45,480 SOMEBODY SAID IT IS NOT CART 5874 03:49:45,480 --> 03:49:47,560 BLANCH BUT ALA CART. IT WAS 5875 03:49:47,560 --> 03:49:48,680 REALLY INTERESTING AND WORTH 5876 03:49:48,680 --> 03:49:51,120 SHARING AND THIRD THING IS I 5877 03:49:51,120 --> 03:49:52,000 ONLY HAVE FOUR. 5878 03:49:52,000 --> 03:49:53,880 OTHER THING WE HEARD FROM A 5879 03:49:53,880 --> 03:49:55,800 NUMBER OF PARTICIPANTS IN 5880 03:49:55,800 --> 03:49:57,160 CONVERSATIONS IS THAT IN TERMS 5881 03:49:57,160 --> 03:49:59,400 OF LINKING DATA SETS THAT ARE 5882 03:49:59,400 --> 03:50:01,560 OTHER THAN HEALTH RELATED DATA 5883 03:50:01,560 --> 03:50:05,600 AND WHEN INTRODUCING IDEAS ABOUT 5884 03:50:05,600 --> 03:50:08,240 LINKING CRIME AND HOUSING AND 5885 03:50:08,240 --> 03:50:10,480 CENSUS DATA, PARTICIPANTS WANTED 5886 03:50:10,480 --> 03:50:11,680 TO BETTER UNDERSTAND WHY. WHY 5887 03:50:11,680 --> 03:50:13,280 WOULD YOU WANT TO DO THAT. 5888 03:50:13,280 --> 03:50:15,600 WHAT RESEARCH WOULD IT HELP TO 5889 03:50:15,600 --> 03:50:16,240 INFORM? 5890 03:50:16,240 --> 03:50:19,600 HOW WOULD BENEFIT BE RETURNED TO 5891 03:50:19,600 --> 03:50:21,560 COMMUNITY WITHOUT IT BEING 5892 03:50:21,560 --> 03:50:21,920 STIGMATIZING. 5893 03:50:21,920 --> 03:50:24,160 YOU KNOW, SO, I THINK THAT IN 5894 03:50:24,160 --> 03:50:25,560 TERMS OF PRESENTING AN 5895 03:50:25,560 --> 03:50:27,240 OPPORTUNITY, I THINK WILL IS AN 5896 03:50:27,240 --> 03:50:29,000 OPPORTUNITY TO BE ARMED WITH 5897 03:50:29,000 --> 03:50:30,600 ANSWERS TO THOSE QUESTIONS TO GO 5898 03:50:30,600 --> 03:50:33,200 INTO COMMUNITIES TO ASK FOR 5899 03:50:33,200 --> 03:50:35,560 INFORMATION. 5900 03:50:35,560 --> 03:50:42,280 OR TO PRESENT THE OPPORTUNITY. 5901 03:50:42,280 --> 03:50:45,840 THE 4TH, NO SHOCKER. IT IS 5902 03:50:45,840 --> 03:50:46,480 AROUND TRUST. 5903 03:50:46,480 --> 03:50:50,640 YOU KNOW, THIS CAME UP IN ALL 5904 03:50:50,640 --> 03:50:52,880 THREE AREAS THAT WE TALKED ABOUT 5905 03:50:52,880 --> 03:50:54,440 IN EVERY SINGLE CONVENING. 5906 03:50:54,440 --> 03:50:57,760 YOU KNOW, THIS ALSO CAME UP IN 5907 03:50:57,760 --> 03:51:01,320 PREVIOUS PANELS AND, YOU KNOW, 5908 03:51:01,320 --> 03:51:02,920 FROM MY PERSPECTIVE I DON'T 5909 03:51:02,920 --> 03:51:05,360 REMEMBER WHO RAISED IT. A 5910 03:51:05,360 --> 03:51:06,520 COUPLE PANELISTS RAISE THE IT. 5911 03:51:06,520 --> 03:51:09,840 IT IS REALLY ABOUT, YES. THIS 5912 03:51:09,840 --> 03:51:12,560 PROCESS HAS BEEN AMAZING. 5913 03:51:12,560 --> 03:51:14,680 THERE WAS TONS OF RICH INSIGHT 5914 03:51:14,680 --> 03:51:16,680 THAT WAS GENERATED FROM ALL 5915 03:51:16,680 --> 03:51:18,680 COMMUNITY MEMBERS THAT 5916 03:51:18,680 --> 03:51:19,040 PARTICIPATED. 5917 03:51:19,040 --> 03:51:21,200 BUT THIS WAS PHASE 2 OF A 5918 03:51:21,200 --> 03:51:22,520 PROJECT; RIGHT? 5919 03:51:22,520 --> 03:51:25,120 AND A NUMBER OF PANELISTS HAVE 5920 03:51:25,120 --> 03:51:26,840 INDICATED THAT IF WE REALLY 5921 03:51:26,840 --> 03:51:29,240 WANTED TO DO THINGS DIFFERENTLY, 5922 03:51:29,240 --> 03:51:30,960 YOU NEED TO ALMOST FLIP IT AND 5923 03:51:30,960 --> 03:51:33,720 SHIFT THE ENTIRE PARADIGM AND 5924 03:51:33,720 --> 03:51:35,600 COMMUNITY ENGAGEMENT NEEDS TO BE 5925 03:51:35,600 --> 03:51:37,760 THRU LINE THROUGHOUT THE ENTIRE 5926 03:51:37,760 --> 03:51:40,200 PROCESS AND SO, YOU KNOW, WHEN 5927 03:51:40,200 --> 03:51:41,880 WE TALK ABOUT TRUST BUILDING, WE 5928 03:51:41,880 --> 03:51:45,040 WENT TO COMMUNITIES WITH CASE 5929 03:51:45,040 --> 03:51:47,280 STUDIES THAT WERE DEVELOPED FROM 5930 03:51:47,280 --> 03:51:48,960 RESEARCH QUESTIONS THAT THE 5931 03:51:48,960 --> 03:51:51,800 RESEARCH COMMUNITY DECIDED THAT 5932 03:51:51,800 --> 03:51:53,880 THEY WERE IMPORTANT. WE BROUGHT 5933 03:51:53,880 --> 03:51:56,040 THEM TO THE COMMUNITY AND ASKED 5934 03:51:56,040 --> 03:51:58,560 THEM HOW THEY FELT ABOUT THOSE 5935 03:51:58,560 --> 03:52:00,480 TOPICS AND HOW THEY WOULD WEIGH 5936 03:52:00,480 --> 03:52:04,280 BENEFITS AND RISKS OPPOSED TO 5937 03:52:04,280 --> 03:52:06,120 ASKING THEM WHAT ARE RESEARCH 5938 03:52:06,120 --> 03:52:08,320 ADVANCES THAT WOULD BE OF MOST 5939 03:52:08,320 --> 03:52:09,800 BENEFIT TO YOUR COMMUNITY AND 5940 03:52:09,800 --> 03:52:11,640 HOW WOULD YOU WEIGH THE BENEFITS 5941 03:52:11,640 --> 03:52:13,160 AND RISKS? 5942 03:52:13,160 --> 03:52:15,520 SO, I JUST THINK THAT, YOU KNOW, 5943 03:52:15,520 --> 03:52:17,640 THAT IS IMPORTANT TO 5944 03:52:17,640 --> 03:52:18,720 CONTEXTUALIZE CONVERSATION IN 5945 03:52:18,720 --> 03:52:19,920 THAT WAY. 5946 03:52:19,920 --> 03:52:20,960 I WILL STOP THERE. 5947 03:52:20,960 --> 03:52:24,280 >>GREAT. THANKS SO MUCH. 5948 03:52:24,280 --> 03:52:25,720 SEAN, LET'S COME DOWN. 5949 03:52:25,720 --> 03:52:27,920 >>SURE, SURE. WHEN I'M SUPPOSE 5950 03:52:27,920 --> 03:52:31,040 THE TO START TO TALK I GET A 5951 03:52:31,040 --> 03:52:32,240 TICKLE IN MY THROAT AND PARDON 5952 03:52:32,240 --> 03:52:34,240 ME IF I HAVE TO STOP AND TAKE 5953 03:52:34,240 --> 03:52:36,360 CARE OF THAT THROUGHOUT THIS. 5954 03:52:36,360 --> 03:52:38,280 AGAIN, CONTEXT FOR ME, I HAVE 5955 03:52:38,280 --> 03:52:41,160 BEEN IN MEDICAL INFORMATICS FOR 5956 03:52:41,160 --> 03:52:43,560 NOW 21 YEARS. 5957 03:52:43,560 --> 03:52:45,440 MY SECOND DAY OF FELLOWSHIP BACK 5958 03:52:45,440 --> 03:52:48,520 IN 2001 AND MY MENTOR CAME TO ME 5959 03:52:48,520 --> 03:52:50,920 AND SAID THERE IS NOT A LOT OF 5960 03:52:50,920 --> 03:52:53,440 PEOPLE WORKING ON RECORD LINKAGE 5961 03:52:53,440 --> 03:52:56,080 AND PASH YENTD MATCHING AND 5962 03:52:56,080 --> 03:52:56,720 BRINGING THIS TOGETHER AND WOULD 5963 03:52:56,720 --> 03:52:58,800 YOU LIKE TO WORK ON THAT? 5964 03:52:58,800 --> 03:53:00,800 YES. I HAVE WORKED IN THAT 5965 03:53:00,800 --> 03:53:02,920 SPACE FOR 20 YEARS AND WORKED 5966 03:53:02,920 --> 03:53:05,160 WITH COUNTRIES TO SET UP LINKAGE 5967 03:53:05,160 --> 03:53:06,960 PROCESS FOR HEALTH CARE AND GOT 5968 03:53:06,960 --> 03:53:12,320 FUNDING FROM NIH RIGHT NOW. 5969 03:53:12,320 --> 03:53:17,200 IN PARTICULAR CURRENTLY I HAVE A 5970 03:53:17,200 --> 03:53:21,360 PACORI GRANT PATIENT CENTERED 5971 03:53:21,360 --> 03:53:23,160 OUTCOME RESEARCH AND LINKING 5972 03:53:23,160 --> 03:53:26,360 PATIENTS AND DATA TOGETHER AND 5973 03:53:26,360 --> 03:53:29,400 USING DEIDENTIFIED TECHNIQUES. 5974 03:53:29,400 --> 03:53:33,800 BECAUSE THIS WAS A PACORI 5975 03:53:33,800 --> 03:53:37,560 PROJECT ONE ACTIVITY WE 5976 03:53:37,560 --> 03:53:39,800 CONDUCTED IS A FOCUS GROUP 5977 03:53:39,800 --> 03:53:41,760 LOOKING AT UNDERSTANDING WHAT 5978 03:53:41,760 --> 03:53:42,880 PATIENTS DO AND DON'T UNDERSTAND 5979 03:53:42,880 --> 03:53:44,520 ABOUT THIS TOPIC AND IS 5980 03:53:44,520 --> 03:53:46,480 CHALLENGE RING TO EXPLAIN TO 5981 03:53:46,480 --> 03:53:49,600 PEOPLE AND ABSOLUTELY IS. SO, 5982 03:53:49,600 --> 03:53:53,520 TAKE THIS. PATIENT MATCHING IS 5983 03:53:53,520 --> 03:53:55,640 PERSONAL. IT IS ABOUT YOUR 5984 03:53:55,640 --> 03:53:56,840 IDENTITY AND GOES TO THE HEART 5985 03:53:56,840 --> 03:54:00,600 OF WHO PEOPLE ARE. WHEN THEY 5986 03:54:00,600 --> 03:54:02,320 HEAR ABOUT FACT THAT WAIT A 5987 03:54:02,320 --> 03:54:04,080 MINUTE. YOU ARE GOING TO -- YOU 5988 03:54:04,080 --> 03:54:06,560 KNOW, SO MANY TIMES TODAY WE GET 5989 03:54:06,560 --> 03:54:09,040 A CREEPY FEELING WHEN GOOGLE 5990 03:54:09,040 --> 03:54:10,440 GIVES AN AD IMMEDIATE WILL I 5991 03:54:10,440 --> 03:54:12,600 AFTER WE TALK ABOUT SOMETHING 5992 03:54:12,600 --> 03:54:14,960 AND IS AN UNSETTLING FEELING. 5993 03:54:14,960 --> 03:54:18,640 IF YOU GET THAT UNSETTLING 5994 03:54:18,640 --> 03:54:21,680 FEELING IN HEALTHCARE, EVEN 5995 03:54:21,680 --> 03:54:24,000 WORSE. IT IS VERY IMPORTANT FOR 5996 03:54:24,000 --> 03:54:26,040 PEOPLE TO UNDERSTAND THAT 5997 03:54:26,040 --> 03:54:27,000 VISCERAL RESPONSE THAT PEOPLE 5998 03:54:27,000 --> 03:54:30,120 GET WHEN WE START TO TALK ABOUT 5999 03:54:30,120 --> 03:54:32,160 PATIENT MATCHING AND IDENTITY 6000 03:54:32,160 --> 03:54:33,840 MATCHING AND SIMILAR FOR OTHER 6001 03:54:33,840 --> 03:54:36,520 THINGS AND AI WORK AND MAKING 6002 03:54:36,520 --> 03:54:37,760 INFERENCES YOU MIGHT NOT KNOW 6003 03:54:37,760 --> 03:54:40,160 EVEN ABOUT YOURSELF AND DURING 6004 03:54:40,160 --> 03:54:41,000 FOCUS GROUPS THERE IS -- TELL ME 6005 03:54:41,000 --> 03:54:43,520 IF YOU THINK THERE IS A CERTAIN 6006 03:54:43,520 --> 03:54:45,960 THEME OR PATTERN REEMERGING. 6007 03:54:45,960 --> 03:54:50,960 WE SAW FOUR ISSUES: 6008 03:54:50,960 --> 03:54:52,520 TRANSPARENCY, ACCESS AND 6009 03:54:52,520 --> 03:54:54,600 CONTROL, TYPE OF USE, AND HOW 6010 03:54:54,600 --> 03:54:57,200 DATA WAS GOING TO BE SECURED. 6011 03:54:57,200 --> 03:54:59,600 SO, THERE WERE REGARDING 6012 03:54:59,600 --> 03:55:01,280 TRANSPARENCY, THERE WERE PEOPLE 6013 03:55:01,280 --> 03:55:02,640 WANTING TO UNDERSTAND HOW THIR 6014 03:55:02,640 --> 03:55:05,160 DATA IS BEING USED. WE HEARD 6015 03:55:05,160 --> 03:55:06,960 THAT MULTIPLE TIMES TODAY. 6016 03:55:06,960 --> 03:55:08,920 I THINK IF YOU REMEMBER NOTHING 6017 03:55:08,920 --> 03:55:11,440 FROM THIS CONFERENCE, PATIENTS 6018 03:55:11,440 --> 03:55:13,040 WANT TO KNOW HOW THEIR DATA IS 6019 03:55:13,040 --> 03:55:13,920 BEING USED. 6020 03:55:13,920 --> 03:55:17,240 IN TERMS OF ACCESS AND CONTROL, 6021 03:55:17,240 --> 03:55:19,720 THEY -- PATIENTS WANT TO FEEL A 6022 03:55:19,720 --> 03:55:22,280 SENSE OF OWNERSHIP OF THEIR 6023 03:55:22,280 --> 03:55:23,040 DATA. 6024 03:55:23,040 --> 03:55:25,560 AND FEEL LIKE THEY HAVE SOME 6025 03:55:25,560 --> 03:55:28,280 SORT OF ABILITY TO MANAGE THAT 6026 03:55:28,280 --> 03:55:29,160 INFORMATION. 6027 03:55:29,160 --> 03:55:32,000 IN OUR FOCUS GROUPS, THE 6028 03:55:32,000 --> 03:55:35,400 GREATEST FEAR THAT WAS EXPRESSED 6029 03:55:35,400 --> 03:55:38,240 BY THE INDIVIDUALS WAS THE 6030 03:55:38,240 --> 03:55:42,040 POTENTIAL FOR LONG-TERM USE OF 6031 03:55:42,040 --> 03:55:44,240 ELECTRONIC HEALTH RECORD DATA IT 6032 03:55:44,240 --> 03:55:46,280 THAT IS ON VARIOUS SCALES WE 6033 03:55:46,280 --> 03:55:48,240 LOOKED AT THAT IS OF GREATEST 6034 03:55:48,240 --> 03:55:50,160 FEAR AND CONCERN AND MANY PEOPLE 6035 03:55:50,160 --> 03:55:51,720 EXPRESSED CONCERN ABOUT, YOU 6036 03:55:51,720 --> 03:55:54,720 KNOW, WE ALREADY TALKED ABOUT IS 6037 03:55:54,720 --> 03:55:56,400 THERE POTENTIAL FOR USING LINKED 6038 03:55:56,400 --> 03:55:59,720 DATA FOR, YOU KNOW, STIGMATIZING 6039 03:55:59,720 --> 03:56:02,920 OR MARGINALIZE THE FOLKS. 6040 03:56:02,920 --> 03:56:04,520 THERE IS ALSO -- MAYBE I DON'T 6041 03:56:04,520 --> 03:56:06,880 WANT MY DATA USED IN A 6042 03:56:06,880 --> 03:56:08,880 PARTICULAR PROJECT THAT I'M NOT 6043 03:56:08,880 --> 03:56:10,240 IN FAVOR OF OR DON'T SUPPORT OR 6044 03:56:10,240 --> 03:56:12,240 DON'T HAVE ISSUES ABOUT. 6045 03:56:12,240 --> 03:56:14,320 SO, THOSE ARE THE TYPES OF 6046 03:56:14,320 --> 03:56:17,800 CONCERNS AND I THINK THAT GETS, 6047 03:56:17,800 --> 03:56:21,640 AGAIN, TO AGENCY IN THIS 6048 03:56:21,640 --> 03:56:22,720 PROCESS. 6049 03:56:22,720 --> 03:56:25,160 THE WORKING THAT WE DID AND OUR 6050 03:56:25,160 --> 03:56:27,040 DOING RIGHT NOW AS I MENTIONED 6051 03:56:27,040 --> 03:56:29,600 THROUGH PACORI IS USING 6052 03:56:29,600 --> 03:56:32,600 SOMETHING CALLED PRIVACY 6053 03:56:32,600 --> 03:56:35,640 PRESERVING RECORD LINKAGE, PPRL. 6054 03:56:35,640 --> 03:56:37,560 I SEE SOME HEADS SHAKING IN THE 6055 03:56:37,560 --> 03:56:40,840 ROOM. IT IS A RAPIDLY GROWING 6056 03:56:40,840 --> 03:56:43,640 EMERGING METHOD FOR LINKING 6057 03:56:43,640 --> 03:56:46,360 PATIENT DATA IN A WAY THAT DOES 6058 03:56:46,360 --> 03:56:48,160 NOT EXPOSE IDENTITY. 6059 03:56:48,160 --> 03:56:49,880 THAT TAKES A LITTLE GETTING USED 6060 03:56:49,880 --> 03:56:53,280 TO. WAIT A MINUTE. WHAT? 6061 03:56:53,280 --> 03:56:55,360 YOU ARE LINKING PEOPLE TOGETHER 6062 03:56:55,360 --> 03:56:56,720 BUT DON'T KNOW WHAT THEY ARE AND 6063 03:56:56,720 --> 03:56:59,800 WHAT PPL IS AND NIH RIGHT NOW 6064 03:56:59,800 --> 03:57:05,600 DURING COVID CREATED NATIONAL 6065 03:57:05,600 --> 03:57:09,600 COV 6066 03:57:09,600 --> 03:57:11,280 COVID. CLINICAL DATA IS SENT TO 6067 03:57:11,280 --> 03:57:13,600 ONE REPOSITORY AND IDENTITY DATE 6068 03:57:13,600 --> 03:57:16,720 ATHAW IS DEIDENTIFIED, TAKES A 6069 03:57:16,720 --> 03:57:19,320 DIFFERENT PANEL. USING 6070 03:57:19,320 --> 03:57:23,800 DEIDENTIFIED METHODS, WE CAN MAP 6071 03:57:23,800 --> 03:57:25,240 UNKNOWN INDIVIDUALS TOGETHER TO 6072 03:57:25,240 --> 03:57:27,400 SAY WE KNOW THAT THESE PEOPLE 6073 03:57:27,400 --> 03:57:29,360 ARE THE SAME PERSON BUT WE DON'T 6074 03:57:29,360 --> 03:57:31,000 KNOW WHO THEY ARE. 6075 03:57:31,000 --> 03:57:33,320 THIS CONCEPT OF SEPARATING THE 6076 03:57:33,320 --> 03:57:35,760 CONCERNS AND PAYLOAD DATA FROM 6077 03:57:35,760 --> 03:57:38,560 IDENTITY DATA AND KEEPING THOSE 6078 03:57:38,560 --> 03:57:40,480 SEPARATE AND MANAGED 6079 03:57:40,480 --> 03:57:42,720 DRAMATICALLY REDUCED LEVEL OF 6080 03:57:42,720 --> 03:57:44,200 CONCERN ABOUT WHAT PEOPLE HAD 6081 03:57:44,200 --> 03:57:46,000 ABOUT HOW THEIR DATA WAS BEING 6082 03:57:46,000 --> 03:57:47,880 USE THE NOT ONLY BECAUSE -- I 6083 03:57:47,880 --> 03:57:51,800 THINK WE DID A FAIRLY DECENT JOB 6084 03:57:51,800 --> 03:57:53,520 OF EXPLAINING TECHNOLOGY AND I 6085 03:57:53,520 --> 03:57:55,840 PROMISE YOU, IT IS SECURE. 6086 03:57:55,840 --> 03:57:57,040 SOMETIMES THEY BELIEVE US. 6087 03:57:57,040 --> 03:58:00,800 BUT, I THINK WHAT MANY PEOPLE 6088 03:58:00,800 --> 03:58:05,160 EXPRESSED WAS THAT THEY SAW WE 6089 03:58:05,160 --> 03:58:06,000 WERE CONSIDERATE OF THEIR 6090 03:58:06,000 --> 03:58:07,680 FEELINGS AND CONCERNS AND TO 6091 03:58:07,680 --> 03:58:10,200 SEE, WOW. THEY HAVE ACTUALLY -- 6092 03:58:10,200 --> 03:58:12,360 THEY HAVE PEELED APART THE 6093 03:58:12,360 --> 03:58:14,240 SYSTEM TO MAKE SHOOUR THAT SOME 6094 03:58:14,240 --> 03:58:16,320 STUFF I AM CONCERNED ABOUT IS 6095 03:58:16,320 --> 03:58:18,480 ACCOUNTED FOR AND ACCOMMODATED 6096 03:58:18,480 --> 03:58:20,240 AND THINK THAT IS ANOTHER PART 6097 03:58:20,240 --> 03:58:22,200 OF THIS STORY THAT WE NEED TO BE 6098 03:58:22,200 --> 03:58:23,240 THINKING ABOUT. 6099 03:58:23,240 --> 03:58:27,200 WAS I SURPRISED BY OUTCOMES? 6100 03:58:27,200 --> 03:58:28,760 ABSOLUTELY NOT. WE HAVE SEEN 6101 03:58:28,760 --> 03:58:30,440 THIS, AGAIN, THROUGHOUT THE DAY. 6102 03:58:30,440 --> 03:58:32,080 I DO THINK WE WILL PROBABLY TALK 6103 03:58:32,080 --> 03:58:34,800 ABOUT THIS LATER. THERE IS, I 6104 03:58:34,800 --> 03:58:37,320 THINK, EMERGING STRATEGIES TO 6105 03:58:37,320 --> 03:58:41,400 ADDRESS MANY ISSUES. 6106 03:58:41,400 --> 03:58:42,160 THANK YOU. 6107 03:58:42,160 --> 03:58:43,040 >>[INDISCERNIBLE]? 6108 03:58:43,040 --> 03:58:44,960 >>GREAT. WELL, THANK YOU FOR 6109 03:58:44,960 --> 03:58:45,960 THE INTRO. 6110 03:58:45,960 --> 03:58:48,800 I HAVE A FEW POINTS ALSO THAT 6111 03:58:48,800 --> 03:58:51,840 CAME FROM THE DISCUSSIONS OF 6112 03:58:51,840 --> 03:58:52,320 OTHER PANELS. 6113 03:58:52,320 --> 03:58:54,360 TRUST DEFINITELY COMES IN 6114 03:58:54,360 --> 03:58:57,240 WHETHER IT IS EXCLUSIVE TO AI 6115 03:58:57,240 --> 03:59:00,000 PROBABLY BECAUSE WE JUST NEED 6116 03:59:00,000 --> 03:59:02,640 MORE DATA IN AI. 6117 03:59:02,640 --> 03:59:04,360 STATISTICAL MODELS BEFORE AND 6118 03:59:04,360 --> 03:59:06,240 DATA SHARING AND ALL ISSUES THAT 6119 03:59:06,240 --> 03:59:09,560 WERE THERE. WHEN IT COMES ABOUT 6120 03:59:09,560 --> 03:59:10,440 TRANSPARENCY, I WOULD TELL YOU 6121 03:59:10,440 --> 03:59:12,840 WHAT I WAS WATCHING THE NEWS 6122 03:59:12,840 --> 03:59:15,200 YESTERDAY. I WANTED TO WATCH 6123 03:59:15,200 --> 03:59:15,640 LOCAL NEWS. 6124 03:59:15,640 --> 03:59:20,400 I MOVED AWAY FROM HERE. 6125 03:59:20,400 --> 03:59:23,680 AND THE HEADLINE WAS PANDEMIC IS 6126 03:59:23,680 --> 03:59:24,800 OVER ON TUESDAY. 6127 03:59:24,800 --> 03:59:27,000 I THOUGHT THAT WAS QUITE -- IT 6128 03:59:27,000 --> 03:59:29,320 CAUGHT MY ATTENTION; RIGHT? 6129 03:59:29,320 --> 03:59:32,040 I SAID THAT IS GREAT. IT IS 6130 03:59:32,040 --> 03:59:32,240 OVER. 6131 03:59:32,240 --> 03:59:36,520 AND WHAT DID THEY MEAN BY THAT? 6132 03:59:36,520 --> 03:59:40,080 EMERGENCY STATE WAS NOT -- NO 6133 03:59:40,080 --> 03:59:40,480 LONGER APPLICABLE. 6134 03:59:40,480 --> 03:59:43,320 WHAT DOES IT MEAN FOR ALL OF THE 6135 03:59:43,320 --> 03:59:45,200 ELECTRONIC RECORDS THAT WERE 6136 03:59:45,200 --> 03:59:47,560 SHARED IN A STATE OF EMERGENCY. 6137 03:59:47,560 --> 03:59:50,200 WHAT HAPPENS TO THOSE? 6138 03:59:50,200 --> 03:59:55,080 THAT WAS A GOOD THING TO THINK 6139 03:59:55,080 --> 03:59:55,680 ABOUT. 6140 03:59:55,680 --> 03:59:58,920 THE OTHER THING IT OFTEN COMES 6141 03:59:58,920 --> 04:00:01,960 WHEN I EXPLAIN PRIVACY 6142 04:00:01,960 --> 04:00:05,280 PRESERVING RECORD LINKAGE IS 6143 04:00:05,280 --> 04:00:07,120 NAME ITSELF DOESN'T GUARANTEE 6144 04:00:07,120 --> 04:00:08,520 PRIVACY. IN FACT, WHENEVER YOU 6145 04:00:08,520 --> 04:00:10,560 LINK SOMETHING, YOU ARE MAKING 6146 04:00:10,560 --> 04:00:12,160 IT LESS PRIVATE. 6147 04:00:12,160 --> 04:00:14,920 YOU ARE INCREASING THE CHANCES 6148 04:00:14,920 --> 04:00:16,480 OF RE-IDENTIFYING AND YOU ARE 6149 04:00:16,480 --> 04:00:19,040 MAKING A RECORD THAT IS MORE 6150 04:00:19,040 --> 04:00:19,560 MATCHABLE TO EXTERNAL 6151 04:00:19,560 --> 04:00:21,960 INFORMATION THAT YOU HAVE. I 6152 04:00:21,960 --> 04:00:23,720 THINK THAT IS ULTRA IMPORTANT TO 6153 04:00:23,720 --> 04:00:26,680 SAY THAT PRIVACY PRESERVING 6154 04:00:26,680 --> 04:00:28,480 RECORD LINKAGE ONLY MEANS YOU 6155 04:00:28,480 --> 04:00:30,800 ARE NOT SHARING EXPLICIT 6156 04:00:30,800 --> 04:00:32,600 IDENTIFIERS AND ALL THERE IS TO 6157 04:00:32,600 --> 04:00:32,800 IT. 6158 04:00:32,800 --> 04:00:35,760 IF YOU OWN HALF OF DATA BEING 6159 04:00:35,760 --> 04:00:38,960 SHARED, YOU AUTOMATICALLY CAN 6160 04:00:38,960 --> 04:00:42,080 MATCH AND FIND MORE INFORMATION 6161 04:00:42,080 --> 04:00:45,960 ABOUT THAT PARTICULAR PERSON. 6162 04:00:45,960 --> 04:00:48,440 IT IS NOT PRIVACY PROTECTING FOR 6163 04:00:48,440 --> 04:00:53,080 AT LEAST ONE PARTY THAT HAS DATA 6164 04:00:53,080 --> 04:00:59,320 MATCHED AND IS IMPORTANT TO SAY 6165 04:00:59,320 --> 04:01:04,280 IN NAME OF IT, IT IS MISLEADING 6166 04:01:04,280 --> 04:01:06,520 IN CERTAIN CIRCLES AND I WORK A 6167 04:01:06,520 --> 04:01:08,880 LOT WITH PRIVACY TECHNOLOGY AND 6168 04:01:08,880 --> 04:01:10,880 METHODS TO OBSCURE DATA AND SO 6169 04:01:10,880 --> 04:01:13,720 ON. BOTTOM LINE IS IF DATA IS 6170 04:01:13,720 --> 04:01:16,040 TO BE USEFUL, THEY CANNOT BE 6171 04:01:16,040 --> 04:01:20,440 COMPLETELY ANONYMIZED; RIGHT? 6172 04:01:20,440 --> 04:01:21,000 PERSONALIZED MEDICINE AND 6173 04:01:21,000 --> 04:01:23,120 PRECISION MEDICINE IS ALL ABOUT 6174 04:01:23,120 --> 04:01:24,520 INDIVIDUAL. IF YOU ARE NOT 6175 04:01:24,520 --> 04:01:26,520 GOING TO GET TO PARTICULARS OF 6176 04:01:26,520 --> 04:01:31,720 THE INDIVIDUAL, IT IS NOT THAT 6177 04:01:31,720 --> 04:01:32,960 HELPFUL. 6178 04:01:32,960 --> 04:01:40,600 SO, EVEN WHEN PROMISED DATA 6179 04:01:40,600 --> 04:01:42,320 WON'T LEAVE ENCLAVE AND LEARNING 6180 04:01:42,320 --> 04:01:46,840 AND SO ON BY ITSELF IT DOESN'T 6181 04:01:46,840 --> 04:01:49,000 PREVENT PRIVACY BREACHES TO 6182 04:01:49,000 --> 04:01:52,040 OCCUR AND GO INTO ENCLAVE DOING 6183 04:01:52,040 --> 04:01:52,680 CALCULATION LEARNING SOMETHING 6184 04:01:52,680 --> 04:01:55,840 ABOUT SOMEONE ELSE AND THAT IS 6185 04:01:55,840 --> 04:01:58,800 IMPORTANT TO SAY. 6186 04:01:58,800 --> 04:02:01,960 ONE THING THAT SURPRISED ME IS 6187 04:02:01,960 --> 04:02:03,800 PARTICIPANTS TENDED TO SAY IT IS 6188 04:02:03,800 --> 04:02:06,280 OKAY TO LINK TO ASK FOR 6189 04:02:06,280 --> 04:02:08,480 RECRUITMENT AND IT IS BETTER 6190 04:02:08,480 --> 04:02:10,600 WHEN IT IS COMPLETELY ANONYMIZED 6191 04:02:10,600 --> 04:02:14,520 AND THOSE TWO THINGS CANNOT GO 6192 04:02:14,520 --> 04:02:18,520 TOGET 6193 04:02:18,520 --> 04:02:20,640 TOGETHER. 6194 04:02:20,640 --> 04:02:22,320 COMPLETELY ANONYMIZED DOESN'T 6195 04:02:22,320 --> 04:02:27,960 EXIST AND IS ON GDPRS MAKING IT 6196 04:02:27,960 --> 04:02:30,160 TOTALLY IMPOSSIBLE TO SHARE IN 6197 04:02:30,160 --> 04:02:33,480 THAT PARTICULAR SCENARIO AND 6198 04:02:33,480 --> 04:02:37,360 HEARD EARLIER TODAY ABOUT MODELS 6199 04:02:37,360 --> 04:02:41,520 BENEFITING ALL AND WE EVOLVE TO 6200 04:02:41,520 --> 04:02:46,360 MOD EMS MAKING IT EXPLICIT TO 6201 04:02:46,360 --> 04:02:50,000 WHO IS APPLICABLE AND VEHICLES 6202 04:02:50,000 --> 04:02:55,800 AND CARGO AND FOR LUXURY CAR AND 6203 04:02:55,800 --> 04:02:56,920 KNOWING WHICH IS WHICH WILL BE 6204 04:02:56,920 --> 04:02:58,600 AN IMPORTANT THING. I AGREE 6205 04:02:58,600 --> 04:03:03,600 THERE NEEDS TO BE AN INDEX OR 6206 04:03:03,600 --> 04:03:07,760 CATALOGUE WITH METADATA AND 6207 04:03:07,760 --> 04:03:09,600 ANOTHER THING TO PAY ATTENTION 6208 04:03:09,600 --> 04:03:12,360 TO AND MODELS THAT MAY CHANGE 6209 04:03:12,360 --> 04:03:16,240 PRACTICE AND UNLESS YOU HAVE A 6210 04:03:16,240 --> 04:03:17,840 CONTROLLED ARM TO KNOW EFFECT OF 6211 04:03:17,840 --> 04:03:19,640 INTERVENTION YOU WON'T KNOW AND 6212 04:03:19,640 --> 04:03:23,160 YOU CHANGE PRACTICES AND IT WILL 6213 04:03:23,160 --> 04:03:28,640 BE VERY HARD. 6214 04:03:28,640 --> 04:03:32,120 LAST RELATED TO CONSENT FOR 6215 04:03:32,120 --> 04:03:33,720 RESEARCHERS AND WHAT IS LACKING 6216 04:03:33,720 --> 04:03:37,720 AND IS DIFFICULT TO DO SAID 6217 04:03:37,720 --> 04:03:45,560 INDICATION FOR PUBLIC ON ITEMS 6218 04:03:45,560 --> 04:03:47,760 NOTHING IS PRIVATE AND PROS AND 6219 04:03:47,760 --> 04:03:50,880 CONS AND PEOPLE MENTIONED HERE 6220 04:03:50,880 --> 04:03:52,840 IT IS OKAY FOR IMPORTANT 6221 04:03:52,840 --> 04:03:54,120 RESEARCH WHAT IS IMPORTANT FOR 6222 04:03:54,120 --> 04:03:56,600 YOU IS NOT FOR ME AND DATA 6223 04:03:56,600 --> 04:03:58,760 SENSITIVE TO ME MIGHT NOT BE TO 6224 04:03:58,760 --> 04:04:02,320 YOU. THERE IS A LOT THERE TO BE 6225 04:04:02,320 --> 04:04:05,080 LEAR 6226 04:04:05,080 --> 04:04:05,320 LEARNED. 6227 04:04:05,320 --> 04:04:05,680 >>THANK YOU. 6228 04:04:05,680 --> 04:04:07,240 >>WELL, THANK YOU SO MUCH FOR 6229 04:04:07,240 --> 04:04:10,960 THE INVITE AND FOR SHARING 6230 04:04:10,960 --> 04:04:13,520 RESULTS OF YOUR WORK. 6231 04:04:13,520 --> 04:04:15,960 THERE IS ANOTHER. I WOULD LIKE 6232 04:04:15,960 --> 04:04:19,000 TO SHARE PREPUBLISHED FINDINGS 6233 04:04:19,000 --> 04:04:22,120 MIXED STUDIES I DID FOR 6234 04:04:22,120 --> 04:04:24,600 PARTICULARLY TRIBAL MEMBERS 6235 04:04:24,600 --> 04:04:26,160 ASSESSING DATA SHARING PRIVACY 6236 04:04:26,160 --> 04:04:27,600 AND DEPOSITION AND SOME COMMENTS 6237 04:04:27,600 --> 04:04:38,200 ARE HIGHLY RELEVANT. 6238 04:04:38,200 --> 04:04:40,760 I WANTED TO SHARE A FEW QUOTES 6239 04:04:40,760 --> 04:04:44,320 AND A FEW FINDINGS. 6240 04:04:44,320 --> 04:04:46,600 ONE, INDIGENOUS PEOPLES ARE 6241 04:04:46,600 --> 04:04:49,560 CONCERNED ABOUT CONSENT OF DATA 6242 04:04:49,560 --> 04:04:55,120 AND USE OF STUDIES -- AS HIGHEST 6243 04:04:55,120 --> 04:04:55,880 CONCERN AND HIGHER COMPARED TO 6244 04:04:55,880 --> 04:04:57,880 WHETHER OR NOT THEY WILL HAVE 6245 04:04:57,880 --> 04:04:59,400 RESULTS OF DATA RETURNED TO THEM 6246 04:04:59,400 --> 04:05:01,600 AND QUOTE I WANT TO KNOW WHO IS 6247 04:05:01,600 --> 04:05:04,000 LOOKING AT MY DNA AND OUR JEANS 6248 04:05:04,000 --> 04:05:08,560 AND BY EXTENSION DATA THAT IS AN 6249 04:05:08,560 --> 04:05:14,680 INTRIGUING CONCEPT THAT AS 6250 04:05:14,680 --> 04:05:15,560 RESEARCHERS WANT THIS IT SHOULD 6251 04:05:15,560 --> 04:05:18,920 BE A TWO-WAY STREET AND 6252 04:05:18,920 --> 04:05:19,920 FACILITATING TRANSPARENCY AND 6253 04:05:19,920 --> 04:05:22,040 THOSE ACCESSING DATA MIGHT 6254 04:05:22,040 --> 04:05:23,600 FOSTER TRUST AND SHOULD BE ABLE 6255 04:05:23,600 --> 04:05:25,480 TO RESERVE RIGHT WHO WILL USE 6256 04:05:25,480 --> 04:05:26,960 DATA AND WHAT THEY WILL USE IT 6257 04:05:26,960 --> 04:05:29,400 ON AND THIS IS HORRIBLE AND 6258 04:05:29,400 --> 04:05:32,360 HORRIFYING TO ME AND WE DON'T 6259 04:05:32,360 --> 04:05:33,400 LITERALLY OWN ANYTHING ANYMORE 6260 04:05:33,400 --> 04:05:35,640 EVEN STATISTICS THAT RAISES 6261 04:05:35,640 --> 04:05:37,240 QUESTIONS ABOUT DATA OWNERSHIP 6262 04:05:37,240 --> 04:05:39,560 AND STEWARDSHIP AND HOW IT PLAYS 6263 04:05:39,560 --> 04:05:41,680 OUT IN PRIVATE SECTOR AND IN 6264 04:05:41,680 --> 04:05:43,800 TERMS OFLENESS TO PARTICIPATE 6265 04:05:43,800 --> 04:05:46,240 AND IN STUDIES BASED OFF WHO IS 6266 04:05:46,240 --> 04:05:48,560 FUNDING OR LEADING IT SURVEY 6267 04:05:48,560 --> 04:05:52,360 RESPONDENTS WERE -- YOU KNOW, 6268 04:05:52,360 --> 04:05:53,040 EXPRESS WILLINGNESS PARTICIPATE 6269 04:05:53,040 --> 04:05:56,040 IN STUDIES IN HEALTH SERVICES 6270 04:05:56,040 --> 04:05:59,800 AND NON-PROFIT ORGANIZATIONS AND 6271 04:05:59,800 --> 04:06:02,280 RANKED NON-NIH INSTITUTIONS AND 6272 04:06:02,280 --> 04:06:03,960 PHARMACEUTICAL COMPANIES DEAD 6273 04:06:03,960 --> 04:06:07,240 LAST. 73% TOP RATED COMPARED TO 6274 04:06:07,240 --> 04:06:09,960 PHARMACEUTICAL COMPANIES AT 36% 6275 04:06:09,960 --> 04:06:13,840 AND WERE RATED LESS IN TERMS OF 6276 04:06:13,840 --> 04:06:17,160 TRUSTWORTHINESS AND THERE IS A 6277 04:06:17,160 --> 04:06:19,680 HUGE STRONG NUMBER OF EXCERPT 6278 04:06:19,680 --> 04:06:20,440 DEMONSTRATING STRONGEST TRUST OF 6279 04:06:20,440 --> 04:06:24,040 US GOVERNMENT AND STATED IT IS A 6280 04:06:24,040 --> 04:06:26,040 SCARY TOPIC AND IS FOR PEOPLE 6281 04:06:26,040 --> 04:06:28,520 AND MANDATE ON RESERVATION 6282 04:06:28,520 --> 04:06:29,600 CONTROLLING DATA AND EVERYTHING 6283 04:06:29,600 --> 04:06:31,320 AND HOW WE LIVE AND FUNDING WE 6284 04:06:31,320 --> 04:06:33,920 WILL GET IF WE GET FUNDING AND 6285 04:06:33,920 --> 04:06:37,320 PARTICIPANTS FELT TRIBES SHOULD 6286 04:06:37,320 --> 04:06:39,080 HAVE DATA SHARING PROTOCOLS IN 6287 04:06:39,080 --> 04:06:41,240 PLACE AND SHOULD BE CODIFIED 6288 04:06:41,240 --> 04:06:43,600 UNDER TRIBAL LAW AND WOULD FEEL 6289 04:06:43,600 --> 04:06:44,880 BETTER IF TRIBES WERE EXEMPT 6290 04:06:44,880 --> 04:06:49,560 FROM THE GET-GO AND FELT MORE 6291 04:06:49,560 --> 04:06:55,960 COMFORTABLE ABOUT HAVING DATA IN 6292 04:06:55,960 --> 04:06:57,120 TRIBALLY MANAGED REPOSITORY HELD 6293 04:06:57,120 --> 04:06:59,920 MORE LOCALLY AND IN PLACE THEY 6294 04:06:59,920 --> 04:07:01,240 COULD PHYSICALLY SEE AND THOSE 6295 04:07:01,240 --> 04:07:03,360 ARE FINDINGS TO CONTEXTUALIZE IN 6296 04:07:03,360 --> 04:07:04,960 SPACE THAT PEOPLE ARE NOT REALLY 6297 04:07:04,960 --> 04:07:06,560 UNDERSTANDING ABOUT IN TERMS OF 6298 04:07:06,560 --> 04:07:08,520 WHAT HEALTH CARE SPACE LOOKS 6299 04:07:08,520 --> 04:07:10,560 LIKE AND WHAT HEALTH SERVICES 6300 04:07:10,560 --> 04:07:12,600 DATA SPACE LOOKS LIKE FOR US. 6301 04:07:12,600 --> 04:07:13,840 MOST AMERICANS WE ACKNOWLEDGE 6302 04:07:13,840 --> 04:07:17,160 THAT HEALTH CARE IS INCREDIBLY 6303 04:07:17,160 --> 04:07:19,480 FRACTIONATED AND IS MORESO FOR 6304 04:07:19,480 --> 04:07:22,280 ALASKA NATIVES AND AMERICAN 6305 04:07:22,280 --> 04:07:25,000 INDIANS DUE TO CHRONIC FUNDING 6306 04:07:25,000 --> 04:07:26,680 AND RECRUITMENT OF AI AND USE OF 6307 04:07:26,680 --> 04:07:28,920 CLINICAL DATA OUTSIDE OF TRIBAL 6308 04:07:28,920 --> 04:07:30,960 JURISDICTION IS AN ETHICAL ISSUE 6309 04:07:30,960 --> 04:07:35,760 IN UNDERMINING INDIGENOUS 6310 04:07:35,760 --> 04:07:39,440 SOVEREIGNTIES AND CONSENT AND 6311 04:07:39,440 --> 04:07:42,600 RELATING TO TRIBAL OVERSIGHT AND 6312 04:07:42,600 --> 04:07:44,480 NIH ITSELF BY FEDERAL 6313 04:07:44,480 --> 04:07:46,960 PROGRAMMING AND MANAGEMENT AND 6314 04:07:46,960 --> 04:07:48,440 RESEARCH OVERSIGHT AND FOR 6315 04:07:48,440 --> 04:07:49,400 INSTANCE TRIBAL NATIONS THAT 6316 04:07:49,400 --> 04:07:53,480 DON'T HAVE IRBS OR IRRBS THAT IS 6317 04:07:53,480 --> 04:07:55,280 94% OF THEM IS IT APPROPRIATE TO 6318 04:07:55,280 --> 04:07:59,200 DEFAULT TO USING IHS IRBS 6319 04:07:59,200 --> 04:08:01,840 CONCERNING RESEARCH OUTSIDE OF 6320 04:08:01,840 --> 04:08:04,360 IHS AND TRIBAL COMMUNITIES THAT 6321 04:08:04,360 --> 04:08:05,800 DON'T HAVE RECORDS AND SHAWN AND 6322 04:08:05,800 --> 04:08:09,000 I HAD FASCINATING CONVERSATION 6323 04:08:09,000 --> 04:08:11,960 OVER LUNCH I WORKED WITH A TRIBE 6324 04:08:11,960 --> 04:08:17,000 IN NORTH DAKOTA THEY USED 6325 04:08:17,000 --> 04:08:18,720 RECORDS OVER A DECADE AGO AND 6326 04:08:18,720 --> 04:08:20,600 PAPER COPIES SCANNED INTO THE 6327 04:08:20,600 --> 04:08:23,240 RECORD WITH HUGE IMPLICATIONS 6328 04:08:23,240 --> 04:08:25,600 HOW TO CONDUCT LONGITUDINAL 6329 04:08:25,600 --> 04:08:27,160 COORDINATION STUDIES AND 6330 04:08:27,160 --> 04:08:29,160 THINKING ABOUT HARMONIZATION AND 6331 04:08:29,160 --> 04:08:31,200 HESITATE TO DRAW ATTENTION TO 6332 04:08:31,200 --> 04:08:33,000 THIS NEEDS TO BE EXPLORED AT 6333 04:08:33,000 --> 04:08:35,480 COMMUNITY LEVEL AND GENA GENETIC 6334 04:08:35,480 --> 04:08:36,680 INFORMATION ON DISCRIMINATION 6335 04:08:36,680 --> 04:08:39,320 ACT DOESN'T PROTECT IHS 6336 04:08:39,320 --> 04:08:40,640 PARTICIPANTS THINKING ABOUT 6337 04:08:40,640 --> 04:08:43,760 HARMONIZING ACROSS DATA SYSTEMS 6338 04:08:43,760 --> 04:08:44,920 INCLUDING GENOMIC INFORMATION 6339 04:08:44,920 --> 04:08:47,360 COULD HAVE HUGE UNINTENDED 6340 04:08:47,360 --> 04:08:48,080 CONSEQUENCES AND THERE IS RETURN 6341 04:08:48,080 --> 04:08:51,000 OF THE DATA AND THERE IS A LOT 6342 04:08:51,000 --> 04:08:53,600 OF QUESTIONS AND IS IN RESPONSE 6343 04:08:53,600 --> 04:08:56,200 TO SCENARIO AND LOT OF QUESTIONS 6344 04:08:56,200 --> 04:08:57,720 AND CONCERNS RELATING TO 6345 04:08:57,720 --> 04:08:59,680 INDIVIDUAL IDENTIFIERS IN TERMS 6346 04:08:59,680 --> 04:09:01,840 OF REPACKING AND 6347 04:09:01,840 --> 04:09:03,800 RE-IDENTIFICATION AND 6348 04:09:03,800 --> 04:09:06,520 REIFICATION ABOUT RACIAL PURITY 6349 04:09:06,520 --> 04:09:10,560 ABOUT TRIBES AND THIS RISK IS 6350 04:09:10,560 --> 04:09:12,680 HEIGHTENED IN LINKAGE SYSTEMS 6351 04:09:12,680 --> 04:09:13,560 AND DIFFERENT REGULATIONS 6352 04:09:13,560 --> 04:09:16,360 INCLUDING PUBLIC HEALTH SECTOR 6353 04:09:16,360 --> 04:09:18,760 AND STATE EPIDEMIOLOGICAL 6354 04:09:18,760 --> 04:09:20,800 DATABASES AND OTHER FORMS OF 6355 04:09:20,800 --> 04:09:21,600 DATA SETS. 6356 04:09:21,600 --> 04:09:24,240 BRINGING UP EXAMPLES OF STUDIES 6357 04:09:24,240 --> 04:09:27,240 THAT WERE ROOTED IN SEATTLE AREA 6358 04:09:27,240 --> 04:09:30,640 WHERE THEY HAD A BUNCH OF 6359 04:09:30,640 --> 04:09:32,960 INDIGENOUS WOMEN WHO WERE 6360 04:09:32,960 --> 04:09:36,400 PATIENTS AT URBAN HEALTH CARE 6361 04:09:36,400 --> 04:09:37,560 CENTER RE-IDENTIFYING THEIR 6362 04:09:37,560 --> 04:09:39,280 TRIBAL STATUS BY HARMONIZING 6363 04:09:39,280 --> 04:09:42,360 WITH STATE CANCER DATABASES AND 6364 04:09:42,360 --> 04:09:44,040 REEFFECTIVELY REIDENTIFIED 6365 04:09:44,040 --> 04:09:46,520 TRIBES WITHOUT TRIBAL COMMUNITY 6366 04:09:46,520 --> 04:09:48,680 CONSENT. THIS WAS MEANT TO SORT 6367 04:09:48,680 --> 04:09:51,920 OF ADD TO THE VALIDITY OF -- OF 6368 04:09:51,920 --> 04:09:54,720 -- OF BIOLOGICAL ASSUMPTIONS 6369 04:09:54,720 --> 04:09:56,360 RELATED TO INDINL NEIGHTY ROOTED 6370 04:09:56,360 --> 04:09:58,720 IN DNA THAT THERE IS A LOT OF 6371 04:09:58,720 --> 04:10:00,280 QUESTIONS THERE AND IN TERMS OF 6372 04:10:00,280 --> 04:10:02,400 NEXT 5 YEARS WHAT ARE THINGS WE 6373 04:10:02,400 --> 04:10:03,640 SHOULD THINK OF? 6374 04:10:03,640 --> 04:10:06,320 1, WHO IS DATA DEFINITIONS 6375 04:10:06,320 --> 04:10:08,480 BENEFITING AND HUMAN VERSUS 6376 04:10:08,480 --> 04:10:10,040 NON-HUMAN AND DOES DEIDENTIFYING 6377 04:10:10,040 --> 04:10:11,640 DATA REMOVE RISKS TO THE 6378 04:10:11,640 --> 04:10:13,480 INDIVIDUAL IN THE GROUP AND 6379 04:10:13,480 --> 04:10:16,160 CONCEPT, LOTS OF THIS IS WESTERN 6380 04:10:16,160 --> 04:10:17,560 AND INDIVIDUALIZED AND 6381 04:10:17,560 --> 04:10:20,760 DEFINITIONS ARE ROOTED IN 1960S 6382 04:10:20,760 --> 04:10:23,720 AND 70S BELL MONT REPORT 6383 04:10:23,720 --> 04:10:25,520 CONKRECHTS OF RISKS THAT ARE 6384 04:10:25,520 --> 04:10:30,760 MORE INVASIVE NOW WITH MORE 6385 04:10:30,760 --> 04:10:35,880 INTEROWINGTIVE WHOLE GENOME 6386 04:10:35,880 --> 04:10:46,840 APPROAIS BENEFITING ESPECIALLY 6387 04:10:54,400 --> 04:10:55,160 SHORT TERM AND TRIBAL COMMUNITY 6388 04:10:55,160 --> 04:10:56,720 MEMBERS RATING JOB AND 6389 04:10:56,720 --> 04:10:57,840 EDUCATIONAL OPPORTUNITIES 6390 04:10:57,840 --> 04:10:59,360 CREATED BY HEALTH RESEARCH 6391 04:10:59,360 --> 04:11:01,120 HIGHER THAN BENEFITS FROM 6392 04:11:01,120 --> 04:11:02,240 ACTUALLY RESEARCHING THE 6393 04:11:02,240 --> 04:11:04,720 CONDITION AND POINTS TO REALLY 6394 04:11:04,720 --> 04:11:06,400 HELPINGTOUS CREATE DATA 6395 04:11:06,400 --> 04:11:08,120 ECONOMIES MORE LOCAL TO TRIBAL 6396 04:11:08,120 --> 04:11:10,200 MEMBERS BUILDING UP RESEARCH 6397 04:11:10,200 --> 04:11:12,200 CAPACITY FOR TRIBES TO ACTUALLY 6398 04:11:12,200 --> 04:11:14,480 MANAGE THEIR OWN DATA AND CAN 6399 04:11:14,480 --> 04:11:18,760 PRIVATE PUBLIC RESEARCH IN 6400 04:11:18,760 --> 04:11:20,080 BIOMEDICAL SECTOR BE EQUITABLE 6401 04:11:20,080 --> 04:11:22,360 AND NOTICE TALKING TO DRUG 6402 04:11:22,360 --> 04:11:24,800 COMPANIES UTILIZING CONSORTIUMS 6403 04:11:24,800 --> 04:11:26,400 DATA SETS THEY ASK US HOW MANY 6404 04:11:26,400 --> 04:11:28,120 AND OF WHAT CONDITIONS AND WE 6405 04:11:28,120 --> 04:11:30,160 HAVE SWITCHED QUESTION BACK TO 6406 04:11:30,160 --> 04:11:31,800 COMPANIES AND ASKED THEM WELL 6407 04:11:31,800 --> 04:11:34,080 HOW ABOUT THIS FOR A CONCEPT AND 6408 04:11:34,080 --> 04:11:35,960 USING INDIGENOUS PEOPLE'S DATA 6409 04:11:35,960 --> 04:11:39,560 TO STUDY CONDITIONS THAT EFFECT 6410 04:11:39,560 --> 04:11:40,960 INDIGENOUS PEOPLE AND YOU 6411 04:11:40,960 --> 04:11:42,840 CONSTITUTE 3% OF POPULATION THAT 6412 04:11:42,840 --> 04:11:46,600 WON'T BE PROFIT GENERATIVE THAT 6413 04:11:46,600 --> 04:11:48,640 UNDERLIES A HUGE AMOUNT OF 6414 04:11:48,640 --> 04:11:50,280 ASSUMPTION DRIVING INNOVATION 6415 04:11:50,280 --> 04:11:52,480 AND ESPECIALLY FOR PUBLIC AND 6416 04:11:52,480 --> 04:11:55,200 PRIVATE ENDEAVORS AND HOW DO WE 6417 04:11:55,200 --> 04:11:56,960 OPERATIONALIZE RESPECT FOR 6418 04:11:56,960 --> 04:11:58,160 INDIGENOUS SOVEREIGNTY? 6419 04:11:58,160 --> 04:11:59,760 LANGUAGE IN UPDATED COMMON RULE 6420 04:11:59,760 --> 04:12:02,800 AND WHAT HAPPENS TO SINGLE IRB 6421 04:12:02,800 --> 04:12:05,480 MANDATE ACADEMIC INSTITUTION 6422 04:12:05,480 --> 04:12:07,040 PUTS IN POLICY ANOTHER 6423 04:12:07,040 --> 04:12:08,240 INSTITUTION INCLUDING TRIBAL 6424 04:12:08,240 --> 04:12:12,200 IRBS WHAT HAPPENS TO TRIBES 6425 04:12:12,200 --> 04:12:15,320 WITHOUT FEDERALWIDE INSURANCE 6426 04:12:15,320 --> 04:12:22,280 POLICY WITH A -- DATA SHARING 6427 04:12:22,280 --> 04:12:26,480 AND NOW A PUBLIC HEALTH LAW WHO 6428 04:12:26,480 --> 04:12:28,320 OWNS DATA WHEN PARTNERING WITH 6429 04:12:28,320 --> 04:12:30,440 FOR PROFIT INDUSTRY SOMETHING 6430 04:12:30,440 --> 04:12:32,320 BROUGHT UP IN LAST SESSION AND I 6431 04:12:32,320 --> 04:12:33,720 MENTIONED EARLIER AT FIRST PANEL 6432 04:12:33,720 --> 04:12:37,480 THAT OPEN DATA BENEFITS 6433 04:12:37,480 --> 04:12:39,000 RESEARCHERS MORE EQUITABLY 6434 04:12:39,000 --> 04:12:40,760 BENEFITING COMPANIES MORE AND 6435 04:12:40,760 --> 04:12:43,120 PUBLIC DATA AND KEEPING DATA 6436 04:12:43,120 --> 04:12:44,160 PRIVATE PROTECTING INNOVATION 6437 04:12:44,160 --> 04:12:47,400 AND HOW DOES AND WHAT DOES OPEN 6438 04:12:47,400 --> 04:12:49,160 DATA AND DATA HARMONIZATION AND 6439 04:12:49,160 --> 04:12:50,640 HOW IT PLAYS OUT WHEN 6440 04:12:50,640 --> 04:12:52,200 INTERNATIONAL PARTNERS ARE 6441 04:12:52,200 --> 04:12:53,680 INVOLVED COULD HAVE INTELLECTUAL 6442 04:12:53,680 --> 04:12:57,080 PROPERTIES MEASURES PROTECTING 6443 04:12:57,080 --> 04:12:58,960 INNOVATION DOMESTIC LEVEL AND 6444 04:12:58,960 --> 04:13:02,200 WHAT HAPPENS WHEN PARTNERING 6445 04:13:02,200 --> 04:13:04,120 WITH INTERNATIONAL PARTNER AND 6446 04:13:04,120 --> 04:13:07,880 HOW DOES IT GO TO PROTOCOLS THAT 6447 04:13:07,880 --> 04:13:08,680 HAVEN'T OPERATIONALIZED THESE 6448 04:13:08,680 --> 04:13:12,800 LEGALLY FOR GLOBALIZED 6449 04:13:12,800 --> 04:13:14,360 INDIGENOUS PEOPLES AND 6450 04:13:14,360 --> 04:13:14,720 COMMUNITIES? 6451 04:13:14,720 --> 04:13:18,040 >>WOW. I HEARD A FEW THINGS 6452 04:13:18,040 --> 04:13:21,600 THAT SORT OF THERE WAS 6453 04:13:21,600 --> 04:13:23,760 CROSS-TALK BETWEEN YOUR COMMENTS 6454 04:13:23,760 --> 04:13:25,600 AND RONNIE PICKED UP ON THINGS 6455 04:13:25,600 --> 04:13:27,480 FROM EARLIER PANELS ABOUT MORE 6456 04:13:27,480 --> 04:13:29,600 EDUCATION OF RESEARCHERS AND 6457 04:13:29,600 --> 04:13:30,080 MORE RESEARCH. 6458 04:13:30,080 --> 04:13:34,680 YOU KNOW, THAT THIS WAS JUST A 6459 04:13:34,680 --> 04:13:37,760 VERY HIGH-LEVEL TOUCH, IF YOU 6460 04:13:37,760 --> 04:13:40,400 WILL, OF 160 PEOPLE SO JUST 6461 04:13:40,400 --> 04:13:43,560 SCRATCHING THE SURFACE AND YOUR 6462 04:13:43,560 --> 04:13:45,560 COMMENT ABOUT HOW PEOPLE ON THE 6463 04:13:45,560 --> 04:13:47,520 ONE HAPPENED SAID THEY WERE MOST 6464 04:13:47,520 --> 04:13:49,360 SUPPORTIVE OF DATA LINK WAJ WHEN 6465 04:13:49,360 --> 04:13:52,080 IT WAS COMPLETELY ANONYMOUS AND 6466 04:13:52,080 --> 04:13:53,320 STRONGLY ENDORSED THE IDEA IT 6467 04:13:53,320 --> 04:13:57,000 COULD BE USED TO IDENTIFY PEOPLE 6468 04:13:57,000 --> 04:13:58,760 WHO COULD BE INVITED TO 6469 04:13:58,760 --> 04:14:01,120 PARTICIPATE THAT SEEMS LIKE A 6470 04:14:01,120 --> 04:14:02,400 CONTRADICTION AND SEEMS LIKE 6471 04:14:02,400 --> 04:14:03,480 EXACTLY THE KIND OF SET OF 6472 04:14:03,480 --> 04:14:09,000 QUESTIONS IT THAT WE CAN DIG 6473 04:14:09,000 --> 04:14:11,080 INTO WITH FURTHER RESEARCH 6474 04:14:11,080 --> 04:14:12,360 UNDERSTANDING WHEN PEOPLE SAY OR 6475 04:14:12,360 --> 04:14:14,240 ARE ENDORSING IDEA THAT IT 6476 04:14:14,240 --> 04:14:16,160 SHOULD BE FULLY ANONYMIZED WHAT 6477 04:14:16,160 --> 04:14:18,280 THEY ACTUALLY MEAN BY THAT AND 6478 04:14:18,280 --> 04:14:20,000 THEY MIGHT NOT MEAN WHAT WE 6479 04:14:20,000 --> 04:14:23,080 THINK THEY MEAN OR WHAT WE WOULD 6480 04:14:23,080 --> 04:14:24,440 MEAN AND YEAH. 6481 04:14:24,440 --> 04:14:27,800 AND I THINK THAT THANK YOU, 6482 04:14:27,800 --> 04:14:29,040 KRYSTAL, FOR YOUR POINTS. 6483 04:14:29,040 --> 04:14:31,000 YOU REALLY -- YOU KNOW, WE HEARD 6484 04:14:31,000 --> 04:14:33,600 A LITTLE ABOUT INTELLECTUAL 6485 04:14:33,600 --> 04:14:34,440 PROPERTY TODAY AND HEARD A 6486 04:14:34,440 --> 04:14:37,480 LITTLE ABOUT OWNERSHIP. 6487 04:14:37,480 --> 04:14:40,840 IT SEEMS TO ME IN MY OWN 6488 04:14:40,840 --> 04:14:43,040 REFLECTION ON WHAT WE HAVE DONE 6489 04:14:43,040 --> 04:14:44,600 AS A WORKING GROUP ONE THING I 6490 04:14:44,600 --> 04:14:46,720 THOUGHT OF WE DON'T HAVE 6491 04:14:46,720 --> 04:14:48,800 RESPONSIBILITY NOT 6492 04:14:48,800 --> 04:14:49,560 RESPONSIBILITY BUT WE HAVE WORD 6493 04:14:49,560 --> 04:14:51,600 RESPONSIBILITY AND RESPECT IN 6494 04:14:51,600 --> 04:14:54,240 OUR LIST OF SORT OF ETHICAL 6495 04:14:54,240 --> 04:14:58,320 DOMAINS AND ETHICAL CONCEPTS. 6496 04:14:58,320 --> 04:15:00,960 WE HAVE OTHER WORDS LIKE 6497 04:15:00,960 --> 04:15:02,240 CONTROL; RIGHT? 6498 04:15:02,240 --> 04:15:03,440 CONTROL DEFINITELY -- BEING ABLE 6499 04:15:03,440 --> 04:15:05,400 TO CONTROL WHAT HAPPENS TO YOUR 6500 04:15:05,400 --> 04:15:08,200 DATA IN SOME WAYS DOES RELATE TO 6501 04:15:08,200 --> 04:15:12,440 PEOPLE FEELING RESPECTED BY US. 6502 04:15:12,440 --> 04:15:15,440 BUT, AS I WAS LISTENING TO 6503 04:15:15,440 --> 04:15:17,280 KRYSTAL IN PARTICULAR AND OTHERS 6504 04:15:17,280 --> 04:15:19,480 ALSO, I WAS THINKING, YOU KNOW, 6505 04:15:19,480 --> 04:15:22,320 MAYBE THAT WAS PERHAPS AN 6506 04:15:22,320 --> 04:15:24,040 OVERSIGHT TO NOT BE VERY 6507 04:15:24,040 --> 04:15:25,760 EXPLICIT IN INCLUDING THAT WORD 6508 04:15:25,760 --> 04:15:26,400 RESPECT. 6509 04:15:26,400 --> 04:15:30,120 ALL RIGHT. I WANT TO GO ON AND 6510 04:15:30,120 --> 04:15:31,680 ASK AND SOME OF THIS HAS ALREADY 6511 04:15:31,680 --> 04:15:32,840 BEEN TOUCHED ON. 6512 04:15:32,840 --> 04:15:35,040 IF ANYBODY WANTS TO ADD ANYTHING 6513 04:15:35,040 --> 04:15:38,400 ABOUT CHALLENGES AND OF ENGAGING 6514 04:15:38,400 --> 04:15:40,440 WITH RESEARCH PARTICIPANTS AND 6515 04:15:40,440 --> 04:15:42,280 PARTICULARLY AROUND NOTIONS OF 6516 04:15:42,280 --> 04:15:45,320 DATA LINKAGE AND DATA SHARING. 6517 04:15:45,320 --> 04:15:47,360 >>I MEAN, I CAN START. I THINK 6518 04:15:47,360 --> 04:15:49,560 YOU KNOW JUST GOING BACK TO 6519 04:15:49,560 --> 04:15:51,000 INITIAL POINTS I MADE. I THINK 6520 04:15:51,000 --> 04:15:52,440 THERE IS LOTS OF EDUCATION 6521 04:15:52,440 --> 04:15:55,160 NEEDED IN THIS SPACE; RIGHT? 6522 04:15:55,160 --> 04:15:56,840 EVEN STARTING WITH SOMETHING AS 6523 04:15:56,840 --> 04:15:58,760 FOUNDATIONAL AS TALKING ABOUT 6524 04:15:58,760 --> 04:15:59,600 DEFINITIONS; RIGHT? 6525 04:15:59,600 --> 04:16:05,360 I MEAN, AS EARLY AS THE FIRST 6526 04:16:05,360 --> 04:16:08,960 CONVERSATION WE HAD, WE HAD TO 6527 04:16:08,960 --> 04:16:13,000 STOP AND RECOGNIZE THAT WE 6528 04:16:13,000 --> 04:16:14,280 NEEDED TO DEFINE DIFFERENCE 6529 04:16:14,280 --> 04:16:18,800 BETWEEN ANONYMIZE THE DATA AND 6530 04:16:18,800 --> 04:16:20,480 DEIDENTIFIED DATA; SFLIETH. 6531 04:16:20,480 --> 04:16:23,080 COMMUNITY MEMBERS WERE GETTING 6532 04:16:23,080 --> 04:16:25,080 CONFUSED OR NOT UNDERSTANDING 6533 04:16:25,080 --> 04:16:26,680 WHAT THAT MEANT AND ONCE WE 6534 04:16:26,680 --> 04:16:28,160 DEFINE THE AND HELPED THEM 6535 04:16:28,160 --> 04:16:29,560 UNDERSTAND THE DIFFERENCE, 6536 04:16:29,560 --> 04:16:31,040 PEOPLE WERE MUCH MORE 6537 04:16:31,040 --> 04:16:32,520 COMFORTABLE WHEN COMPLAINING, 6538 04:16:32,520 --> 04:16:34,160 OKAY. WHEN TALKING ABOUT DATA 6539 04:16:34,160 --> 04:16:37,000 THAT IS ANONYMIZED; RIGHT? 6540 04:16:37,000 --> 04:16:39,600 I'M COMFORTABLE IN THIS SCENARIO 6541 04:16:39,600 --> 04:16:41,400 IF DATA IS USED IN THIS WAY AND 6542 04:16:41,400 --> 04:16:43,840 IF YOU ARE GIVING ME A SCENARIO 6543 04:16:43,840 --> 04:16:46,120 WHERE MY DATA MIGHT BE USED FOR 6544 04:16:46,120 --> 04:16:48,720 THIS, THIS, OR THIS AND IT IS 6545 04:16:48,720 --> 04:16:50,440 DEIDENTIFIED, WELL, OKAY. I 6546 04:16:50,440 --> 04:16:52,600 WILL CONSIDER BENEFITS AND RISKS 6547 04:16:52,600 --> 04:16:54,560 MAYBE A LITTLE DIFFERENTLY. WE 6548 04:16:54,560 --> 04:16:56,760 WERE ABLE TO HAVE VERY SPECIFIC 6549 04:16:56,760 --> 04:16:57,960 CONVERSATIONS AND SEPARATE THEM 6550 04:16:57,960 --> 04:17:01,160 OUT. IT IS REALLY IMPORTANT. 6551 04:17:01,160 --> 04:17:01,560 >>UH-HUH. 6552 04:17:01,560 --> 04:17:03,520 >>I DO THINK WHAT IT SHOWED US 6553 04:17:03,520 --> 04:17:05,840 IS THE DEFINITIONS PART THAT IS 6554 04:17:05,840 --> 04:17:07,320 REALLY IMPORTANT AND THAT WE 6555 04:17:07,320 --> 04:17:09,400 MADE SOME ASSUMPTIONS AND 6556 04:17:09,400 --> 04:17:13,600 SKIPPED OVER SOME OF THAT AT 6557 04:17:13,600 --> 04:17:14,160 FIRST. 6558 04:17:14,160 --> 04:17:17,600 IT IS COMPLICATED. SHAWN, IN 6559 04:17:17,600 --> 04:17:19,200 PREPARING FOR THIS PANEL I READ 6560 04:17:19,200 --> 04:17:23,680 I DON'T KNOW. 5 OR 6 TIMES AN 6561 04:17:23,680 --> 04:17:26,280 EXPLANATION OF TECHNOLOGY THAT 6562 04:17:26,280 --> 04:17:29,800 YOU ARE BUILDING AND USING. 6563 04:17:29,800 --> 04:17:32,960 IT IS COMPLICATED. 6564 04:17:32,960 --> 04:17:33,640 YOU KNOW? 6565 04:17:33,640 --> 04:17:35,240 YOU EXPLAINED IT IN A WAY THAT 6566 04:17:35,240 --> 04:17:36,960 IS EASIER FOR ME TO UNDERSTAND 6567 04:17:36,960 --> 04:17:40,200 IN 5 OR 6 TIMES I READ IT ON THE 6568 04:17:40,200 --> 04:17:43,600 WEBSITE. IT IS NOT SIMPLE TO 6569 04:17:43,600 --> 04:17:44,080 UNDERSTAND. 6570 04:17:44,080 --> 04:17:46,240 I THINK THAT, YOU KNOW, FOR 6571 04:17:46,240 --> 04:17:47,200 PEOPLE THAT DON'T THINK ABOUT 6572 04:17:47,200 --> 04:17:50,520 THESE THINGS EVERY DAY, YOU 6573 04:17:50,520 --> 04:17:53,840 KNOW, WE JUST NEED TO BE 6574 04:17:53,840 --> 04:17:55,680 DELIBERATE ABOUT HOW WE ARE 6575 04:17:55,680 --> 04:18:02,160 SHARING THIS NFLG THIS /* 6576 04:18:02,160 --> 04:18:04,680 INFORMATION AND INTRODUCING 6577 04:18:04,680 --> 04:18:06,840 TOPICS THAT ARE COMPLICATED AND 6578 04:18:06,840 --> 04:18:09,080 HAVE FOUR HOURS TO EXPLORE THREE 6579 04:18:09,080 --> 04:18:11,840 DISCRETE TOPIC AREAS, IT WAS 6580 04:18:11,840 --> 04:18:13,920 ABOUT AN HOUR FOR EACH TO SORT 6581 04:18:13,920 --> 04:18:16,720 OF GET THE RICH INSIGHTS THAT WE 6582 04:18:16,720 --> 04:18:17,200 DID. 6583 04:18:17,200 --> 04:18:19,800 SO, YOU KNOW, I WAS -- YOU KNOW, 6584 04:18:19,800 --> 04:18:21,640 IN ALL OF THE CONVERSATIONS I 6585 04:18:21,640 --> 04:18:24,040 WAS SO IMPRESSED WITH HOW 6586 04:18:24,040 --> 04:18:26,040 QUICKLY THEY WERE ABLE TO REALLY 6587 04:18:26,040 --> 04:18:29,040 GRASP CONCEPTS AND FOR THIS ONE 6588 04:18:29,040 --> 04:18:32,800 ON LINKAGE IN PARTICULAR, IT IS 6589 04:18:32,800 --> 04:18:36,040 JUST COMPLICATED. 6590 04:18:36,040 --> 04:18:38,040 >>ANOTHER PIECE OF CONTEXT THAT 6591 04:18:38,040 --> 04:18:39,680 IS USEFUL FOR THE EXPERIENCE 6592 04:18:39,680 --> 04:18:42,280 THAT I MENTIONED IS THAT INDIANA 6593 04:18:42,280 --> 04:18:45,720 HAS A COUNTRY THAT IS LONGEST 6594 04:18:45,720 --> 04:18:48,520 RUNNING HEALTH INFORMATION ECH 6595 04:18:48,520 --> 04:18:50,400 CHANGES WE INTEGRATE HUNDREDS OF 6596 04:18:50,400 --> 04:18:52,080 CLINICAL DATA SOURCES TOGETHER 6597 04:18:52,080 --> 04:18:55,400 AND WE LINK THEM. THE WAY THAT 6598 04:18:55,400 --> 04:18:59,840 GOT STARTED WAS THROUGH A 6599 04:18:59,840 --> 04:19:02,240 COALITION OF DIFFERENT 6600 04:19:02,240 --> 04:19:02,920 STAKEHOLDERS. 6601 04:19:02,920 --> 04:19:06,560 IF YOU WANT TO CREATE AN 6602 04:19:06,560 --> 04:19:10,040 ENVIRONMENT WHERE LINKAGE IS AT 6603 04:19:10,040 --> 04:19:14,000 LEAST UNDERSTOOD AND VIEWED 6604 04:19:14,000 --> 04:19:15,520 POSITIVELY I THINK THERE HAS TO 6605 04:19:15,520 --> 04:19:17,920 BE CLEAR VALUE PROPOSITIONS 6606 04:19:17,920 --> 04:19:19,160 PROVIDED HEALTH INFORMATION 6607 04:19:19,160 --> 04:19:21,000 EXCHANGE STARTED BY PATIENT 6608 04:19:21,000 --> 04:19:23,240 SAFETY COALITION, PHYSICIANS, 6609 04:19:23,240 --> 04:19:26,400 AND HEALTH CARE ADMINISTRATORS 6610 04:19:26,400 --> 04:19:28,640 ALL OF WHOM SAID, KNOW WHAT? 6611 04:19:28,640 --> 04:19:30,400 AGGREGATED DATA FOR PURPOSES OF 6612 04:19:30,400 --> 04:19:31,760 PATIENT CARE NOT RESEARCH. I 6613 04:19:31,760 --> 04:19:33,960 WILL TALK ABOUT RESEARCH IN A 6614 04:19:33,960 --> 04:19:34,440 SECOND. 6615 04:19:34,440 --> 04:19:37,960 BUT, THE VALUE OF INTEGRATING A 6616 04:19:37,960 --> 04:19:39,560 PERSON'S RECORD IN THE EMERGENCY 6617 04:19:39,560 --> 04:19:40,720 DEPARTMENT WHERE PHYSICIAN 6618 04:19:40,720 --> 04:19:42,640 DOESN'T KNOW YOU FROM ADAM IS 6619 04:19:42,640 --> 04:19:45,000 CLEAR TO EVERYBODY. THAT GOT 6620 04:19:45,000 --> 04:19:47,440 INFORMATION EXCHANGE STARTED. 6621 04:19:47,440 --> 04:19:50,360 THE THIRD USE CASE WAS RESEARCH. 6622 04:19:50,360 --> 04:19:52,520 YOU KNOW, ARGUMENT THERE IS WE 6623 04:19:52,520 --> 04:19:55,400 WANTED TO IMPROVE LIVES AND 6624 04:19:55,400 --> 04:19:57,120 HEALTHCARE OUTCOMES OF HOOZIERS 6625 04:19:57,120 --> 04:19:58,960 AND TO DO THAT WE HAVE TO BE 6626 04:19:58,960 --> 04:20:01,120 ABLE TO DO RESEARCH. 6627 04:20:01,120 --> 04:20:04,040 AGAIN, P MULTIPLE LAYERS OF 6628 04:20:04,040 --> 04:20:05,800 MESSAGING NEED TO GO THERE. BY 6629 04:20:05,800 --> 04:20:08,200 THE WAY, SECOND USE CASE AND I 6630 04:20:08,200 --> 04:20:09,760 SKIPPED A THIRD AND SECOND USE 6631 04:20:09,760 --> 04:20:15,000 CASE IS PUBLIC HEALTH REPORTING. 6632 04:20:15,000 --> 04:20:18,920 THAT, AGAIN, WAS VALUED VERY 6633 04:20:18,920 --> 04:20:20,320 EARLY ON AND WE EXPLAIN TO 6634 04:20:20,320 --> 04:20:22,040 EVERYBODY PHYSICIANS AND 6635 04:20:22,040 --> 04:20:24,960 LABORATORIES AND HEALTH SYSTEMS 6636 04:20:24,960 --> 04:20:27,560 DO A LOUSY JOB OF REPORTING 6637 04:20:27,560 --> 04:20:29,880 PUBLIC HEALTH AND HEALTH STUDIES 6638 04:20:29,880 --> 04:20:33,920 REPORT LESS THAN 10% OF DISEASES 6639 04:20:33,920 --> 04:20:35,920 IN COMMUNITY AND VALUE 6640 04:20:35,920 --> 04:20:36,840 PROPOSITIONS ONE AFTER THE OTHER 6641 04:20:36,840 --> 04:20:39,360 AND IF YOU WANT TO LINK DATA AND 6642 04:20:39,360 --> 04:20:42,400 TO INTEGRATE DATA IT IS 6643 04:20:42,400 --> 04:20:43,920 INCUMBENT UPON US TO HAVE GOOD 6644 04:20:43,920 --> 04:20:47,440 REASONS FOR DOING SO. 6645 04:20:47,440 --> 04:20:48,720 REASONS THAT RESONATE WITH THOSE 6646 04:20:48,720 --> 04:20:53,720 WHOSE DATA IS GOING TO BE 6647 04:20:53,720 --> 04:20:54,120 [INDISCERNIBLE]. 6648 04:20:54,120 --> 04:20:56,160 >>YEAH. I WOULD SAY THAT 6649 04:20:56,160 --> 04:21:00,600 CONSENT TO LINK NEEDS TO BE 6650 04:21:00,600 --> 04:21:01,440 STUDIED. 6651 04:21:01,440 --> 04:21:03,760 BECAUSE, AGAIN, INCREASES RISK 6652 04:21:03,760 --> 04:21:04,720 OF RE-IDENTIFICATION AND YOU 6653 04:21:04,720 --> 04:21:06,320 THINK THAT YOU CONTRIBUTED TO 6654 04:21:06,320 --> 04:21:09,040 THIS STUDY. THEY HAVE CERTAIN 6655 04:21:09,040 --> 04:21:10,720 DATA. YOU CONTRIBUTED TO THAT 6656 04:21:10,720 --> 04:21:12,240 STUDY AND THEY HAVE OTHER DATA 6657 04:21:12,240 --> 04:21:14,160 BUT YOU DON'T KNOW THAT THEY ARE 6658 04:21:14,160 --> 04:21:16,680 BEING LINKED. 6659 04:21:16,680 --> 04:21:19,120 THAT IS -- IT MIGHT BE 6660 04:21:19,120 --> 04:21:21,600 PROBLEMATIC AND EFFECTS 6661 04:21:21,600 --> 04:21:23,480 ELECTRONIC HEALTH RECORDS THAT 6662 04:21:23,480 --> 04:21:26,000 ARE NOT EXPLICITLY CONSENTED FOR 6663 04:21:26,000 --> 04:21:29,120 LINKAGE, I CAN SEE A BIG PROBLEM 6664 04:21:29,120 --> 04:21:29,440 THERE. 6665 04:21:29,440 --> 04:21:31,960 >>YEAH. THAT IS A REALLY GREAT 6666 04:21:31,960 --> 04:21:34,400 POINT AND TOTALLY CONNECTS ALSO 6667 04:21:34,400 --> 04:21:36,800 WITH RONNIE'S POINT THAT IT IS 6668 04:21:36,800 --> 04:21:38,520 ACTUALLY REALLY DIFFICULT TO 6669 04:21:38,520 --> 04:21:38,840 EXPLAIN. 6670 04:21:38,840 --> 04:21:41,400 NOT JUST THAT WE WILL SHARE YOUR 6671 04:21:41,400 --> 04:21:44,000 DATA BUT WE WILL LINK IT. WE 6672 04:21:44,000 --> 04:21:46,040 WILL MAKE IT -- THAT MIGHT 6673 04:21:46,040 --> 04:21:49,000 CHANGE RISKS AND BENEFITS OF NEW 6674 04:21:49,000 --> 04:21:51,680 DATA SET. 6675 04:21:51,680 --> 04:21:52,920 BUT, YEAH. 6676 04:21:52,920 --> 04:21:56,600 >>I WANT TO ADD A WORD TO YOUR 6677 04:21:56,600 --> 04:22:03,720 ETHICAL DOMAIN. THAT IS RE KCR 6678 04:22:03,720 --> 04:22:04,320 ROW PROSTY. 6679 04:22:04,320 --> 04:22:07,720 >>THANK YOU. I CAN TYPE NOT 6680 04:22:07,720 --> 04:22:09,240 SPEAK. I THINK THAT IS 6681 04:22:09,240 --> 04:22:11,120 IMPORTANT. IT WAS NOW TWO 6682 04:22:11,120 --> 04:22:15,000 SUMMERS AGO THAT NIH ANNOUNCED 6683 04:22:15,000 --> 04:22:17,560 TWO LARGE AI DRIVEN ENDEAVORS 6684 04:22:17,560 --> 04:22:19,240 WITH AMA HEAD AND 6685 04:22:19,240 --> 04:22:20,840 [INDISCERNIBLE] AND ONE THING I 6686 04:22:20,840 --> 04:22:23,000 APPRECIATED IS THEY ACTUALLY HAD 6687 04:22:23,000 --> 04:22:25,840 AN ETHICAL CORE. IT WAS ALL 6688 04:22:25,840 --> 04:22:27,680 FAIR DRIVEN THAT TO ME HAS BEEN 6689 04:22:27,680 --> 04:22:30,320 A CRITIQUE I HAD OF FAIR 6690 04:22:30,320 --> 04:22:31,400 RESEARCHERS ARE FINDING RULES 6691 04:22:31,400 --> 04:22:34,040 AND ACCESS AND ENGAGEMENT TO 6692 04:22:34,040 --> 04:22:35,320 BENEFIT THEIR ABILITY TO DERIVE 6693 04:22:35,320 --> 04:22:37,240 AND BENEFIT FROM DATA BUT THERE 6694 04:22:37,240 --> 04:22:39,560 IS NOTHING ABOUT THAT COMMUNITY 6695 04:22:39,560 --> 04:22:40,760 BENEFIT; RIGHT? 6696 04:22:40,760 --> 04:22:42,200 WHAT IS OUR SOCIAL 6697 04:22:42,200 --> 04:22:42,600 RESPONSIBILITY? 6698 04:22:42,600 --> 04:22:44,520 HOW ARE WE ACTUALLY ENSURING WE 6699 04:22:44,520 --> 04:22:46,320 ARE DELIVERING THAT BACK TO 6700 04:22:46,320 --> 04:22:47,400 COMMUNITY MEMBERS BECAUSE ONE 6701 04:22:47,400 --> 04:22:49,840 THING I SMILES HAVE ASKED 6702 04:22:49,840 --> 04:22:50,960 SCIENTISTS IN THE PAST IS YOU 6703 04:22:50,960 --> 04:22:53,440 KNOW WHEN YOU ARE ENTERING 6704 04:22:53,440 --> 04:22:54,760 COMMUNITIES WHAT ARE YOU DOING 6705 04:22:54,760 --> 04:22:57,480 TO ACTUALLY ENSURE THAT YOUR 6706 04:22:57,480 --> 04:22:58,840 RESEARCH ACTUALLY IMPACTS PEOPLE 6707 04:22:58,840 --> 04:23:03,000 YOU ARE INTERACING WITH? 6708 04:23:03,000 --> 04:23:04,880 >>WE PUBLISH AND ADVANCE 6709 04:23:04,880 --> 04:23:06,480 SCIENCE A LITTLE BIT AND UP TO 6710 04:23:06,480 --> 04:23:09,160 SOMEBODY ELSE TO PICK UP THE BAT 6711 04:23:09,160 --> 04:23:12,760 ON AND DELIVER THE INNOVATION 6712 04:23:12,760 --> 04:23:14,200 TRANSLATED BACK AND KICK THE CAN 6713 04:23:14,200 --> 04:23:16,280 DOWN THE ROAD TYPE OF THING AND 6714 04:23:16,280 --> 04:23:17,880 MEANWHILE WE ARE DISSEMINATING 6715 04:23:17,880 --> 04:23:19,840 TRUST IN THE SYSTEM AND 6716 04:23:19,840 --> 04:23:21,320 COMMUNITIES ARE SEEING OTHER 6717 04:23:21,320 --> 04:23:22,440 ENTITIES ARE BENEFITING FIRST 6718 04:23:22,440 --> 04:23:23,840 BEFORE IT IS ACTUALLY GETTING 6719 04:23:23,840 --> 04:23:26,760 BACK TO THEIR COMMUNITIES 6720 04:23:26,760 --> 04:23:29,560 ESPECIALLY WHEN IN SUCH HEALTH 6721 04:23:29,560 --> 04:23:31,640 DISPARATE SITUATIONS AND THEY 6722 04:23:31,640 --> 04:23:33,560 CAN'T REALLY AFFORD TO CONTINUE 6723 04:23:33,560 --> 04:23:36,520 TO WAIT FOR INNOVATIONS AND I 6724 04:23:36,520 --> 04:23:37,760 THINK THAT BY AND LARGE PEOPLE 6725 04:23:37,760 --> 04:23:40,360 DON'T HAVE ISSUES WITH DATA 6726 04:23:40,360 --> 04:23:44,160 LANGUAGE WHEN IT HAS A BENEFIT 6727 04:23:44,160 --> 04:23:45,040 LOCAL TO THEM THAT IS PERCEIVED 6728 04:23:45,040 --> 04:23:48,280 TO BE LOCAL TO THEM AND ARE 6729 04:23:48,280 --> 04:23:49,200 VALUE DRIVEN DECISIONS THAT 6730 04:23:49,200 --> 04:23:50,960 DIFFER BY COMMUNITY AND HAVE TO 6731 04:23:50,960 --> 04:23:52,640 GET COMMUNITY'S INPUT TO 6732 04:23:52,640 --> 04:23:53,800 UNDERSTAND WHAT IT IS THAT WILL 6733 04:23:53,800 --> 04:23:56,040 BE A BENEFIT TO THEM. 6734 04:23:56,040 --> 04:23:59,560 ONE THING I'M STRUGGLING WITH 6735 04:23:59,560 --> 04:24:03,520 NOW IS ACTUALLY HUMAN REFERENCE 6736 04:24:03,520 --> 04:24:06,040 GENOMES AND PANGENOME AND ARE 6737 04:24:06,040 --> 04:24:07,280 PROJECTS THAT ARE EXPANDING 6738 04:24:07,280 --> 04:24:09,520 INCLUSION OF DIVERSE PEOPLES AND 6739 04:24:09,520 --> 04:24:12,520 GENOMIC DATA AND STUDIES TO 6740 04:24:12,520 --> 04:24:15,000 IMPACT RESEARCH AND HEALTH AND 6741 04:24:15,000 --> 04:24:17,080 BIOMEDICAL RESEARCH AND 6742 04:24:17,080 --> 04:24:18,960 INCLUDING DELIVERY OF GENETIC 6743 04:24:18,960 --> 04:24:21,400 TESTS WITH HIGHER CLINICAL 6744 04:24:21,400 --> 04:24:23,720 UTILITY AND UNDERSERVED IN 6745 04:24:23,720 --> 04:24:25,000 POPULATIONS AND QUESTION I HAVE 6746 04:24:25,000 --> 04:24:28,080 IS WILL IT ACTUALLY BENEFIT 6747 04:24:28,080 --> 04:24:30,440 TRIBES AND RESEARCH HAS BEEN 6748 04:24:30,440 --> 04:24:34,840 UNDERTAKEN BY PAST DIVERSITY 6749 04:24:34,840 --> 04:24:36,640 PROJECTS THAT HAVE BEEN HEAVILY 6750 04:24:36,640 --> 04:24:38,320 QUESTIONS ABOUT I TRIBES. THEY 6751 04:24:38,320 --> 04:24:42,240 ARE DOG RESEQUENCING 2.0 OR 3.0 6752 04:24:42,240 --> 04:24:43,760 IN DIFFERENT DATA SETS AND HOW 6753 04:24:43,760 --> 04:24:47,200 IS IT ACTUALLY GOING TO BENEFIT 6754 04:24:47,200 --> 04:24:48,720 TRIBES THAT DON'T HAVE ABILITY 6755 04:24:48,720 --> 04:24:51,360 TO AFFORD TASKS THAT DON'T HAVE 6756 04:24:51,360 --> 04:24:54,720 GENETIC COUNSELORS OR PROVIDERS 6757 04:24:54,720 --> 04:24:56,840 TO CLIFR CULTURAL COMPETENT CARE 6758 04:24:56,840 --> 04:24:58,800 TO DELIVER AND INTERPRET TESTS 6759 04:24:58,800 --> 04:25:01,640 FOR THEM AND HOW ARE WE ACTUALLY 6760 04:25:01,640 --> 04:25:02,600 CONCEPTUALIZING THIS IN 6761 04:25:02,600 --> 04:25:04,120 FRAMEWORK OF INNOVATION ASKING 6762 04:25:04,120 --> 04:25:06,640 FOR ACCESS TO DATA AND 6763 04:25:06,640 --> 04:25:09,000 HARMONIZING DATA ACROSS OTHER 6764 04:25:09,000 --> 04:25:11,040 STREAMS WHEN WE CAN GET IT 6765 04:25:11,040 --> 04:25:13,080 PRIMARILY FROM COMMUNITY MEMBERS 6766 04:25:13,080 --> 04:25:14,960 THEMSELVES WE HAD DETERIORATED 6767 04:25:14,960 --> 04:25:17,320 TRUST SYSTEMS AND HOW DO WE 6768 04:25:17,320 --> 04:25:18,720 ACTUALLY MOVE IT FORWARD I DON'T 6769 04:25:18,720 --> 04:25:18,920 KNOW. 6770 04:25:18,920 --> 04:25:20,520 >>THAT IS SO INTERESTING. 6771 04:25:20,520 --> 04:25:22,200 I WAS REALLY STRUCK WHEN YOU 6772 04:25:22,200 --> 04:25:27,880 SAID THAT IN YOUR STUDY 6773 04:25:27,880 --> 04:25:29,200 COMMUNITY MEMBERS YOU WERE 6774 04:25:29,200 --> 04:25:33,520 INTERVIEWING VIEWED CREATION OF 6775 04:25:33,520 --> 04:25:35,880 BASICALLY OF JOBS AND CAPACITY 6776 04:25:35,880 --> 04:25:37,840 BUILDING AS MORE IMPORTANT 6777 04:25:37,840 --> 04:25:39,800 POTENTIALLY EVEN THEN YOU KNOW 6778 04:25:39,800 --> 04:25:42,760 SORT OF SOME SHORT-TERM MEDICAL 6779 04:25:42,760 --> 04:25:44,480 BENEFIT AND WHEN YOU SAID THAT, 6780 04:25:44,480 --> 04:25:47,080 I THOUGHT, I WONDER IF THAT IS 6781 04:25:47,080 --> 04:25:48,280 BECAUSE PEOPLE HAVE SO LITTLE 6782 04:25:48,280 --> 04:25:52,160 FANL OR TRUST IN THE HEALTH CARE 6783 04:25:52,160 --> 04:25:53,920 SYSTEM THAT MIGHT DELIVER ANY, 6784 04:25:53,920 --> 04:25:56,000 YOU KNOW, PRECISION MEDICINE OR 6785 04:25:56,000 --> 04:25:57,600 MEDICAL BENEFIT THAT THIS IS 6786 04:25:57,600 --> 04:26:01,080 WHAT THEY VIEW AS REALISTIC OR 6787 04:26:01,080 --> 04:26:03,160 IF -- THE FLIPSIDE OF THAT IS 6788 04:26:03,160 --> 04:26:05,240 THAT I FELT LIKE IT WAS 6789 04:26:05,240 --> 04:26:08,200 ENCOURAGING TO ME IN THE SENSE 6790 04:26:08,200 --> 04:26:10,400 THAT THE REASON THAT WE DO 6791 04:26:10,400 --> 04:26:12,440 RESEARCH IS TO ADVANCE KNOWLEDGE 6792 04:26:12,440 --> 04:26:14,560 THAT IS THE -- THE SINGULAR 6793 04:26:14,560 --> 04:26:16,240 THING THAT RESEARCH CAN DO THAT 6794 04:26:16,240 --> 04:26:18,800 OTHER ACTIVITIES LIKE HEALTH 6795 04:26:18,800 --> 04:26:22,080 CARE DON'T NECESSARILY DO OR 6796 04:26:22,080 --> 04:26:24,880 DON'T DO AS WELL. 6797 04:26:24,880 --> 04:26:26,920 AND SO, YOU KNOW, HISTORICALLY 6798 04:26:26,920 --> 04:26:28,640 WE HAVE THOUGHT THAT IS THE 6799 04:26:28,640 --> 04:26:31,640 BENEFIT THAT SOCIETY GETS FROM 6800 04:26:31,640 --> 04:26:32,960 RESEARCH AND IS WHAT PEOPLE 6801 04:26:32,960 --> 04:26:36,720 OUGHT TO BE CONTRIBUTING TO AND 6802 04:26:36,720 --> 04:26:38,800 SORT OF INDIVIDUAL IMMEDIATE SAY 6803 04:26:38,800 --> 04:26:40,240 MEDICAL BENEFIT FROM SAY 6804 04:26:40,240 --> 04:26:40,960 RESEARCH PARTICIPATION IS GREAT 6805 04:26:40,960 --> 04:26:42,560 WHEN WE CAN DO IT. IT SHOULDN'T 6806 04:26:42,560 --> 04:26:46,240 BE OR CAN'T BE THE GOAL OF 6807 04:26:46,240 --> 04:26:48,080 PARTICIPATING IN RESEARCH; 6808 04:26:48,080 --> 04:26:48,840 RIGHT? 6809 04:26:48,840 --> 04:26:51,720 AT SAME TIME GIVEN THERE IS THIS 6810 04:26:51,720 --> 04:26:53,640 REALLY SIGNIFICANT DISPARITY IN 6811 04:26:53,640 --> 04:26:57,080 TERMS OF WHO ACTUALLY GETS LIKE 6812 04:26:57,080 --> 04:26:59,880 THE MEDICAL BENEFIT WHEN THE 6813 04:26:59,880 --> 04:27:01,520 KNOWLEDGE ADVANCES AND BECOMES 6814 04:27:01,520 --> 04:27:02,560 TRANSLATED INTO HEALTHCARE AND 6815 04:27:02,560 --> 04:27:06,200 WE HAVE A VERY UNEQUAL HEALTH 6816 04:27:06,200 --> 04:27:07,960 CARE SYSTEM AND OKAY IF I'M ONE 6817 04:27:07,960 --> 04:27:09,920 OF THE PEOPLE WHO IS RECEIVING 6818 04:27:09,920 --> 04:27:12,280 LESS HEALTH CARE AND POORER 6819 04:27:12,280 --> 04:27:14,000 HEALTH CARE WHY SHOULD I WANT TO 6820 04:27:14,000 --> 04:27:16,320 PARTICIPATE IN RESEARCH AND THAT 6821 04:27:16,320 --> 04:27:17,840 SORT OF OVERALL SOCIAL GOAL 6822 04:27:17,840 --> 04:27:19,840 DOESN'T SEEM TO APPLY TO ME AND 6823 04:27:19,840 --> 04:27:21,560 ONE REASON COULD BE THAT YOU ARE 6824 04:27:21,560 --> 04:27:23,480 ACTUALLY CAPACITY BUILDING; 6825 04:27:23,480 --> 04:27:24,080 RIGHT? 6826 04:27:24,080 --> 04:27:26,720 TO ME, IN FACT, THAT SHOULD BE A 6827 04:27:26,720 --> 04:27:28,880 REASON THAT MAYBE IS IN ALL 6828 04:27:28,880 --> 04:27:30,320 COMMUNITIES; RIGHT? 6829 04:27:30,320 --> 04:27:31,520 AND SOMETHING WE CAN LEARN. 6830 04:27:31,520 --> 04:27:31,880 YES? 6831 04:27:31,880 --> 04:27:34,520 >>I WANTED TO CLARIFY THAT IT 6832 04:27:34,520 --> 04:27:38,120 MIGHT BE I HAVE A CONFLICT AND 6833 04:27:38,120 --> 04:27:45,000 BRIDGE 2AI ETHICS CORE IS ABOUT 6834 04:27:45,000 --> 04:27:46,600 CAPITAL LETTER FAIR IN LOWERCASE 6835 04:27:46,600 --> 04:27:50,160 FAIR TOO. IT IS ETHICAL AND IT 6836 04:27:50,160 --> 04:27:54,160 IS AI. I THINK THERE IS 6837 04:27:54,160 --> 04:27:55,240 ATTENTION TO THAT. 6838 04:27:55,240 --> 04:27:57,320 WHAT IS INTERESTING IS IT IS 6839 04:27:57,320 --> 04:27:59,280 FULLY CONSENTED AND PREPARING 6840 04:27:59,280 --> 04:28:09,800 DATA TO BE OF USE TO A LARGE 6841 04:28:10,760 --> 04:28:12,680 SPECTRUM OF AI APPLICATIONS AND 6842 04:28:12,680 --> 04:28:15,680 PROGRAMS CAN BE BETTER AND SO 6843 04:28:15,680 --> 04:28:18,400 ON. IT IS AN ATTEMPT TO DO THE 6844 04:28:18,400 --> 04:28:19,960 RIGHT THING IN MY OPINION. 6845 04:28:19,960 --> 04:28:21,440 >>FOR ANYBODY WHO DOESN'T KNOW. 6846 04:28:21,440 --> 04:28:23,840 WE HAVE ACRONYMS BEING THROWN 6847 04:28:23,840 --> 04:28:30,720 AROUND HERE. UPPERCASE FAIR 6848 04:28:30,720 --> 04:28:34,640 FAIR IS AN ACRONYM THAT IS BEING 6849 04:28:34,640 --> 04:28:36,760 APPLIED TO DATA IT THAT GOES 6850 04:28:36,760 --> 04:28:40,120 INTO SHARING REPOSITORIES TO 6851 04:28:40,120 --> 04:28:42,120 MAKE SURE THAT YOU DO GET VALUE 6852 04:28:42,120 --> 04:28:45,240 OUT OF THOSE DATA THAT OTHER 6853 04:28:45,240 --> 04:28:48,160 RESEARCHERS CAN USE DATA WHEN 6854 04:28:48,160 --> 04:28:50,320 GOING INTO SHARING REPOSITORY 6855 04:28:50,320 --> 04:28:52,600 THAT IS CAPITAL LETTER FAIR AND 6856 04:28:52,600 --> 04:28:55,400 WHEN KRYSTAL SAID THAT IS 6857 04:28:55,400 --> 04:28:57,160 DIFFERENT THAN FAIRNESS AND 6858 04:28:57,160 --> 04:29:01,240 LOWERCASE FAIRNESS; RIGHT? OR 6859 04:29:01,240 --> 04:29:10,040 JUSTICE OR SOMETHING LIKE THAT 6860 04:29:10,040 --> 04:29:12,680 UPPERCASE FAIR IS METADATA 6861 04:29:12,680 --> 04:29:16,040 STANDARDIZED FILES AND THINGS 6862 04:29:16,040 --> 04:29:22,840 LIKE THAT. 6863 04:29:22,840 --> 04:29:26,480 WE HAVE HEARD IDEAS ABOUT HOW WE 6864 04:29:26,480 --> 04:29:28,320 MIGHT ALTER PRACTICES OR WHAT 6865 04:29:28,320 --> 04:29:31,160 ARE GOOD PRACTICES IN RELATION 6866 04:29:31,160 --> 04:29:33,440 TO DATA LINKAGES AND IF 6867 04:29:33,440 --> 04:29:35,440 EXPANDING ON IDEAS AND FOCUSING 6868 04:29:35,440 --> 04:29:39,120 ON WHAT WE SHOULD BE DOING 6869 04:29:39,120 --> 04:29:41,040 BETTER OR DIFFERENTLY. 6870 04:29:41,040 --> 04:29:43,320 >>I HAVE -- I THINK WE NEED TO 6871 04:29:43,320 --> 04:29:45,280 CONTINUE TO ADVANCE THE STATE OF 6872 04:29:45,280 --> 04:29:48,240 THE ART AND I WILL PUT IN QUOTES 6873 04:29:48,240 --> 04:29:51,040 NOW, PRIVACY PRESERVING RECORD 6874 04:29:51,040 --> 04:29:51,320 LINKAGE. 6875 04:29:51,320 --> 04:29:52,480 >>THANK YOU. 6876 04:29:52,480 --> 04:29:54,640 >>TO YOUR POINT PULLING DATA 6877 04:29:54,640 --> 04:29:54,920 TOGETHER. 6878 04:29:54,920 --> 04:29:56,200 I TREAT THOSE DIFFERENT AND I 6879 04:29:56,200 --> 04:29:58,320 CAN DO DUPLICATOR AND MIGHT WANT 6880 04:29:58,320 --> 04:30:01,280 TO KNOW HOW MUCH OVERLAP BETWEEN 6881 04:30:01,280 --> 04:30:03,240 TWO POPULATIONS THERE ARE AND NO 6882 04:30:03,240 --> 04:30:05,640 INCREASED RISK OF 6883 04:30:05,640 --> 04:30:06,960 RE-IDENTIFICATION THERE. 6884 04:30:06,960 --> 04:30:09,600 THERE IS USES OF RECORD LINKAGE 6885 04:30:09,600 --> 04:30:12,000 AND WILL DEPEND ON USE OF RECORD 6886 04:30:12,000 --> 04:30:14,480 LINKAGE AND HOW YOU USE IT 6887 04:30:14,480 --> 04:30:15,600 DETERMINING WHAT RISK ACTUALLY 6888 04:30:15,600 --> 04:30:19,560 IS AND I THINK THAT WE HAVE TO 6889 04:30:19,560 --> 04:30:21,880 CONTINUE TO THINK ABOUT PRIVACY 6890 04:30:21,880 --> 04:30:25,800 PRESERVING METHOD AND LUCILA IS 6891 04:30:25,800 --> 04:30:27,640 DOING GREAT WORK IN IN A SPACE 6892 04:30:27,640 --> 04:30:30,200 AND ON MITIGATING SIDE LOOKING 6893 04:30:30,200 --> 04:30:32,400 AT WHAT PAYLOAD DATA IS AND ONCE 6894 04:30:32,400 --> 04:30:34,520 I HAVE LINKED PATIENTS TOGETHER 6895 04:30:34,520 --> 04:30:36,600 WE THROW AWAY IDENTIFIERS AND 6896 04:30:36,600 --> 04:30:39,040 YOU DON'T NEED THEM YOU ARE DONE 6897 04:30:39,040 --> 04:30:41,120 LINKING AND YOU HAVE LEFT OVER 6898 04:30:41,120 --> 04:30:43,440 PAY-LLOYD DATA PEOPLE TRY TO DO 6899 04:30:43,440 --> 04:30:44,840 RE-IDENTIFICATION AND LOTS OF 6900 04:30:44,840 --> 04:30:46,360 METHODS ARE OUT THERE THAT ARE 6901 04:30:46,360 --> 04:30:49,280 IN THEIR INFANCY IN TERMS OF 6902 04:30:49,280 --> 04:30:51,040 SPLIT AND FETTERATED LEARNING 6903 04:30:51,040 --> 04:30:54,680 AND THINK THAT NIH SHOULD BE 6904 04:30:54,680 --> 04:30:55,960 ADVOCATING FOR MORE OF THIS TYPE 6905 04:30:55,960 --> 04:30:58,920 OF WORK THAT, AGAIN, IT DOES 6906 04:30:58,920 --> 04:31:02,120 MITIGATE RISK AND HELPS PEOPLE 6907 04:31:02,120 --> 04:31:06,240 TO FEEL MORE CONFIDENT IN ACCESS 6908 04:31:06,240 --> 04:31:10,240 AND CONTROL OF DATA AND THAT IS 6909 04:31:10,240 --> 04:31:12,240 ONE AREA. 6910 04:31:12,240 --> 04:31:17,560 ANOTHER AREA WE NEED TO HAVE 6911 04:31:17,560 --> 04:31:19,280 MORE ETHICAL CONVERSATION AND 6912 04:31:19,280 --> 04:31:23,680 METHOD FOR MATCHING THAT IS 6913 04:31:23,680 --> 04:31:27,280 REFERENTIAL MATCHING IS SHOWN TO 6914 04:31:27,280 --> 04:31:30,520 BE WE STUDIED A FAIR AMOUNT AND 6915 04:31:30,520 --> 04:31:32,520 IS MUCH MORE ACCURATE AND DRAM 6916 04:31:32,520 --> 04:31:36,520 CATICALLY INCREASING ACCURACY OF 6917 04:31:36,520 --> 04:31:37,480 PREVIOUSLY TRADITIONAL MODELS 6918 04:31:37,480 --> 04:31:39,200 AROUND REFERENTIAL MATCHING IS 6919 04:31:39,200 --> 04:31:41,280 WHERE CREDIT BUREAUS AND BOARD 6920 04:31:41,280 --> 04:31:44,800 OF MOTOR VEHICLES AND ALL THESE 6921 04:31:44,800 --> 04:31:47,800 PUBLICLY AVAILABLE DATA SETS ON 6922 04:31:47,800 --> 04:31:50,280 INDIVIDUAL'S DEMOGRAPHICS ARE 6923 04:31:50,280 --> 04:31:52,600 BROUGHT TOGETHER USED TO AUGMENT 6924 04:31:52,600 --> 04:31:57,680 TO ENHANCE MATCHING PROCESSES 6925 04:31:57,680 --> 04:32:06,360 A 6926 04:32:06,360 --> 04:32:06,560 AND. 6927 04:32:06,560 --> 04:32:08,760 USE OF DATA IS LARGELY NOT 6928 04:32:08,760 --> 04:32:10,200 UNDERSTAND AND RECOGNIZED AND 6929 04:32:10,200 --> 04:32:12,880 METHOD WORKS WELL AND IS DRAM AT 6930 04:32:12,880 --> 04:32:14,960 KALILY ACCURATE THAN TRADITIONAL 6931 04:32:14,960 --> 04:32:21,040 METHODS OF MA MATCHING AND 6932 04:32:21,040 --> 04:32:22,120 CONVERSATIONS ABOUT TRADE OFF 6933 04:32:22,120 --> 04:32:24,280 AND REASON BEING USED AND 6934 04:32:24,280 --> 04:32:25,560 EXPOSURE AND LOSS OF CONTROL 6935 04:32:25,560 --> 04:32:29,360 WITH SOME METHODS AND WILL BE 6936 04:32:29,360 --> 04:32:33,520 IMPORTANT TO THINK ABOUT 6937 04:32:33,520 --> 04:32:34,880 TECHNIQUES AND AREAS AND ONE 6938 04:32:34,880 --> 04:32:37,160 MORE AND I WILL STOP. BIAS WE 6939 04:32:37,160 --> 04:32:40,920 HAVEN'T TALKED ABOUT BIAS AND 6940 04:32:40,920 --> 04:32:43,320 RECORD LINKAGE AND SURPRISINGLY 6941 04:32:43,320 --> 04:32:46,040 ARE FEW STUDIES LOOKING AT 6942 04:32:46,040 --> 04:32:47,840 SUBGROUP MATCHING AND PATIENT 6943 04:32:47,840 --> 04:32:51,160 MATCHING AND WE HAVE BEGUN 6944 04:32:51,160 --> 04:32:56,280 STUDYING THAT OVER LAST YEAR AND 6945 04:32:56,280 --> 04:32:57,880 SURPRISE THERE ARE DIFFERENCES 6946 04:32:57,880 --> 04:33:00,720 IN MATCH ACCURACY AMONG 6947 04:33:00,720 --> 04:33:04,720 SUBGROUPS BASED ON AVENLG RANGE 6948 04:33:04,720 --> 04:33:06,520 MEASURE ETHNICITY AND IDENTITY 6949 04:33:06,520 --> 04:33:10,040 CHARACTERISTICS AND 6950 04:33:10,040 --> 04:33:11,280 UNDERSTANDING THAT PEOPLE USE 6951 04:33:11,280 --> 04:33:12,880 ARTIFICIAL INTELLIGENCE IN 6952 04:33:12,880 --> 04:33:16,920 PATIENT MATCHING AND COMMENTS IN 6953 04:33:16,920 --> 04:33:19,360 LAST PANEL APPLY TO 6954 04:33:19,360 --> 04:33:22,040 METHODOLOGICAL APPROACHES WE ARE 6955 04:33:22,040 --> 04:33:26,280 USING BIAS DATA IN INCREASES 6956 04:33:26,280 --> 04:33:28,520 BIASED DATA OUT AND WE HAVE TO 6957 04:33:28,520 --> 04:33:31,080 THINK ALONG THOSE LINES AS WELL. 6958 04:33:31,080 --> 04:33:36,240 >>RAISING TWO WORDS OR 6959 04:33:36,240 --> 04:33:37,560 CONCEPTS: BENEFIT AND 6960 04:33:37,560 --> 04:33:39,920 RESPONSIB 6961 04:33:39,920 --> 04:33:40,320 RESPONSIBILITY. 6962 04:33:40,320 --> 04:33:41,840 I THINK ALL DAY LONG WE TALKED 6963 04:33:41,840 --> 04:33:44,160 ON PANELS BENEFIT CAME UP AND IN 6964 04:33:44,160 --> 04:33:46,040 CONTEXT OF RETURNING BENEFIT TO 6965 04:33:46,040 --> 04:33:47,560 COMMUNITIES THAT IS IMPORTANT IN 6966 04:33:47,560 --> 04:33:49,360 TERMS OF CONTINUING TO BUILD 6967 04:33:49,360 --> 04:33:53,800 TRUST AND DEEPEN TRUST WITH 6968 04:33:53,800 --> 04:33:54,480 COMMUNITIES. 6969 04:33:54,480 --> 04:33:55,800 I WOULD ARGUE AN IMPORTANT THING 6970 04:33:55,800 --> 04:33:59,240 TO BRING INTO THE CONVERSATION 6971 04:33:59,240 --> 04:34:04,160 IS BENEFIT TO INDIVIDUALS WHO 6972 04:34:04,160 --> 04:34:06,360 ARE DEVELOPING TECHNOLOGY; 6973 04:34:06,360 --> 04:34:07,000 RIGHT? 6974 04:34:07,000 --> 04:34:10,800 MORE PEOPLE AND WE HAVE HEARD 6975 04:34:10,800 --> 04:34:11,560 IT. 6976 04:34:11,560 --> 04:34:13,680 IT IS A CONSTANT THEME 6977 04:34:13,680 --> 04:34:15,200 THROUGHOUT THE DAY AND WAY TO 6978 04:34:15,200 --> 04:34:17,600 GET TO BIAS THAT EXISTS IN 6979 04:34:17,600 --> 04:34:19,000 TECHNOLOGY IS GETTING MORE 6980 04:34:19,000 --> 04:34:22,600 PEOPLE TO CONSENT AND BE 6981 04:34:22,600 --> 04:34:23,240 COMFORTABLE WITH PARTICIPATING 6982 04:34:23,240 --> 04:34:26,760 TO SHARE DATA; RIGHT? 6983 04:34:26,760 --> 04:34:30,360 TO BUILD OUT DIVERSITY AND 6984 04:34:30,360 --> 04:34:31,240 PARTICIPATION AND EXPAND 6985 04:34:31,240 --> 04:34:33,040 PARTICIPATION WITHIN THE 6986 04:34:33,040 --> 04:34:35,680 SYSTEMS; RIGHT? 6987 04:34:35,680 --> 04:34:37,920 TECHNOLOGY WILL BE BETTER. IT 6988 04:34:37,920 --> 04:34:39,880 WOULD BE MORE ACCURATE; RIGHT 6989 04:34:39,880 --> 04:34:40,080 SF. 6990 04:34:40,080 --> 04:34:42,280 THERE IS A BENEFIT FROM AN 6991 04:34:42,280 --> 04:34:44,320 INDUSTRY PERSPECTIVE; RIGHT? 6992 04:34:44,320 --> 04:34:46,800 IF YOU THINK ABOUT, YOU KNOW, 6993 04:34:46,800 --> 04:34:49,600 FROM A RECRUITMENT PERSPECTIVE 6994 04:34:49,600 --> 04:34:51,800 FOR FILLING TRIALS AND OUR 6995 04:34:51,800 --> 04:34:54,120 RECORD IS NOT SO GREAT; RIGHT? 6996 04:34:54,120 --> 04:34:57,800 IF WE CAN, YOU KNOW, SHARE THE 6997 04:34:57,800 --> 04:34:59,320 RESPONSIBILITY ACROSS THE 6998 04:34:59,320 --> 04:35:00,880 STAKEHOLDERS FOR DOING THE 6999 04:35:00,880 --> 04:35:04,560 EDUCATION AND DOG THE COMMUNITY 7000 04:35:04,560 --> 04:35:09,280 ENGAGEMENT AND SOME BENEFIT NOT 7001 04:35:09,280 --> 04:35:13,200 ONLY GOES BACK TO COMMUNITY BUT 7002 04:35:13,200 --> 04:35:14,680 INDUSTRY AND TECHNOLOGY 7003 04:35:14,680 --> 04:35:16,320 COMPANIES AND PHARMACEUTICAL 7004 04:35:16,320 --> 04:35:17,760 COMPANIES AND TECHNOLOGIES THAT 7005 04:35:17,760 --> 04:35:21,080 ARE MORE ACCURATE AND THERE IS 7006 04:35:21,080 --> 04:35:22,600 GREATER PARTICIPATION. THERE IS 7007 04:35:22,600 --> 04:35:25,400 A SHARED BENEFIT. THERE IS A 7008 04:35:25,400 --> 04:35:26,800 SHARED RESPONSIBILITY AND SHARED 7009 04:35:26,800 --> 04:35:28,760 BENEFIT. I THINK THAT IS AN 7010 04:35:28,760 --> 04:35:29,800 IMPORTANT POINT I HADN'T HEARD 7011 04:35:29,800 --> 04:35:36,280 MADE IN THE EARLIER PANELS. 7012 04:35:36,280 --> 04:35:41,280 >>SO, I HAVE WRITTEN A COUPLE 7013 04:35:41,280 --> 04:35:44,120 PAPERS ON THIS AND IT IS A 7014 04:35:44,120 --> 04:35:46,880 COMMENT ON FEDERAL OR FEDERATED 7015 04:35:46,880 --> 04:35:48,720 LEARNING AND BLOCK CHAINING 7016 04:35:48,720 --> 04:35:49,920 METHODS AND APPROACHES FOR 7017 04:35:49,920 --> 04:35:51,920 PERHAPS PROVIDING COMMUNITIES 7018 04:35:51,920 --> 04:35:54,920 MORE INPUT IN OPERATIONALIZING 7019 04:35:54,920 --> 04:35:57,160 WHO GETS ACCESS TO DATA AND 7020 04:35:57,160 --> 04:35:58,920 UNDER WHAT TERMS, ET CETERA. 7021 04:35:58,920 --> 04:36:01,360 IT IS REALLY IMPORTANT TO 7022 04:36:01,360 --> 04:36:02,600 UNDERSTAND THOUGH THAT THE 7023 04:36:02,600 --> 04:36:06,400 LEVERS ON ALL OF THE DECISION 7024 04:36:06,400 --> 04:36:13,520 MAKING PATHWAYS IS IF IT IS IN A 7025 04:36:13,520 --> 04:36:15,240 NONCOMMUNAL OR NONCOMMUNITY 7026 04:36:15,240 --> 04:36:17,080 OWNED PLATFORM TO BEGIN WITH 7027 04:36:17,080 --> 04:36:18,800 LEVERS ARE OFTEN TIMES PUSHED BY 7028 04:36:18,800 --> 04:36:21,280 SOMEBODY OUTSIDE OF THE 7029 04:36:21,280 --> 04:36:22,200 STAKEHOLDERS AND MAY NOT 7030 04:36:22,200 --> 04:36:24,160 UNDERSTAND A LOT OF THE CULTURAL 7031 04:36:24,160 --> 04:36:25,920 DYNAMICS AND SOME OF THE 7032 04:36:25,920 --> 04:36:27,480 COMPLEXITIES AND LEGAL ISSUES. 7033 04:36:27,480 --> 04:36:29,320 SO, IT IS REALLY IMPORTANT I 7034 04:36:29,320 --> 04:36:31,760 WILL GO BACK AND DOUBLE DOWN ON 7035 04:36:31,760 --> 04:36:33,520 MY -- ON IMPORTANCE OF ACTUALLY 7036 04:36:33,520 --> 04:36:35,600 THINKING ABOUT DATA CAPACITY AND 7037 04:36:35,600 --> 04:36:37,200 BUILDING DATA INFRASTRUCTURES 7038 04:36:37,200 --> 04:36:39,480 THAT ARE COMMUNITY-BASED AND 7039 04:36:39,480 --> 04:36:40,840 THINKING ABOUT BUILDING SERVERS 7040 04:36:40,840 --> 04:36:42,920 IT THAT ARE COMMUNITY-BASED. 7041 04:36:42,920 --> 04:36:44,400 I'M THINKING LOTS OF TIMES THIS 7042 04:36:44,400 --> 04:36:47,360 IS IN TERMS OF INDIGENOUS 7043 04:36:47,360 --> 04:36:48,280 COMMUNITIES HAVING ABILITY TO 7044 04:36:48,280 --> 04:36:50,400 CREATE FRAMEWORKS FOR THEMSELVES 7045 04:36:50,400 --> 04:36:52,720 IS SOMETHING THAT I HAVE SEEN A 7046 04:36:52,720 --> 04:36:55,120 BIT IN PATIENT ADVOCACY GROUPS 7047 04:36:55,120 --> 04:36:56,880 AS WELL AS RARE VARIANT GROUPS 7048 04:36:56,880 --> 04:36:59,600 AS WELL. SO, I WANTED TO REALLY 7049 04:36:59,600 --> 04:37:01,440 CAUTION WHEN WE ARE TALKING 7050 04:37:01,440 --> 04:37:02,960 ABOUT FL AND BLOCKCHAINING THAT 7051 04:37:02,960 --> 04:37:06,320 WE ARE ALSO THINKING ABOUT 7052 04:37:06,320 --> 04:37:07,560 ENSURING THAT LEVERS ARE AND 7053 04:37:07,560 --> 04:37:09,760 DECISION MAKING AUTHORITIES ARE 7054 04:37:09,760 --> 04:37:12,560 FROM THESE OTHER UNDERSERVED AND 7055 04:37:12,560 --> 04:37:14,600 HISTORICALLY DISENFRANCHISE THE 7056 04:37:14,600 --> 04:37:14,960 PEOPLES. 7057 04:37:14,960 --> 04:37:16,840 AND, YOU KNOW, I ALSO WANT TO 7058 04:37:16,840 --> 04:37:19,320 RAISE THE POINT ABOUT WE ARE 7059 04:37:19,320 --> 04:37:22,120 TALKING ABOUT DATA LINKAGES AND 7060 04:37:22,120 --> 04:37:23,480 HARMONIZATION ACROSS DIFFERENT 7061 04:37:23,480 --> 04:37:25,960 DATA STREAMS AND I JUST WANTED 7062 04:37:25,960 --> 04:37:27,240 TO LIKE BRING IN ANOTHER POINT 7063 04:37:27,240 --> 04:37:28,840 THAT MY BACKGROUND IS IN 7064 04:37:28,840 --> 04:37:32,040 POPULATION GENETICS AND GENETIC 7065 04:37:32,040 --> 04:37:33,080 EPIDEMIOLOGY. 7066 04:37:33,080 --> 04:37:34,680 ESPECIALLY IN THESE AREAS WHERE 7067 04:37:34,680 --> 04:37:37,360 THE -- THE FIELD AND RESEARCH 7068 04:37:37,360 --> 04:37:39,080 HAS ADVANCED BY WHAT IS ACROSS 7069 04:37:39,080 --> 04:37:40,760 THE GENOME AND IN TERMS WHAT YOU 7070 04:37:40,760 --> 04:37:43,160 CAN SEQUENCE AND WHAT IS IN HAD. 7071 04:37:43,160 --> 04:37:48,280 R RECORD ALONE AND ONE OF MY 7072 04:37:48,280 --> 04:37:50,280 HUGE BITS OF EXPERIENCE IS THERE 7073 04:37:50,280 --> 04:37:53,240 IS A KNOWLEDGE GAP RELATED TO 7074 04:37:53,240 --> 04:37:54,240 SOCIAL STRUCTURES OF 7075 04:37:54,240 --> 04:37:55,640 DETERMINANCE OF HEALTH THAT WE 7076 04:37:55,640 --> 04:37:57,440 ARE MISSING THAT AND SOMETIMES 7077 04:37:57,440 --> 04:37:59,760 WE ARE MISSING THIS WILL M TO 7078 04:37:59,760 --> 04:38:01,880 THE POINT WE ARE SO FOCUSED ON 7079 04:38:01,880 --> 04:38:03,720 DATA WE ALREADY HAVE THAT WE ARE 7080 04:38:03,720 --> 04:38:05,720 NOT ALSO ASKING HOW FLAWED THAT 7081 04:38:05,720 --> 04:38:07,520 DATA IS TO BEGIN WITH ESPECIALLY 7082 04:38:07,520 --> 04:38:11,200 FOR QUESTIONS WE SHOULD BE 7083 04:38:11,200 --> 04:38:14,480 ASKING AND ALSO, YOU KNOW, 7084 04:38:14,480 --> 04:38:16,920 THINKING ABOUT IN TERMS OF 7085 04:38:16,920 --> 04:38:18,160 TRAINING RESEARCHERS AND ARE 7086 04:38:18,160 --> 04:38:20,560 THEY ACTUALLY NOT ONLY PROVIDED 7087 04:38:20,560 --> 04:38:22,640 SKILLSETS AND FUNDING TO BE ABLE 7088 04:38:22,640 --> 04:38:24,280 TO DO COMMUNITY ENGAGED 7089 04:38:24,280 --> 04:38:26,920 APPROACHES BUT ABLE TO DO MORE 7090 04:38:26,920 --> 04:38:29,680 QUALITATIVE AND ENL KNOW GRAPHIC 7091 04:38:29,680 --> 04:38:32,280 RESEARCH TO GET QUALITY SURVEY 7092 04:38:32,280 --> 04:38:34,880 DATA THAT IS COMPETENT AND 7093 04:38:34,880 --> 04:38:36,120 RELEVANT FROM UNDERSERVED 7094 04:38:36,120 --> 04:38:37,120 COMMUNITIES AND SOMETHING TO 7095 04:38:37,120 --> 04:38:40,480 THINK MORE AND MORE IN TERMS OF 7096 04:38:40,480 --> 04:38:42,760 BIOINFORMATICS AND ALSO JUST TO 7097 04:38:42,760 --> 04:38:44,400 THESE SORT OF DATA SENSE 7098 04:38:44,400 --> 04:38:46,400 APPROACHES AND, YOU KNOW, THESE 7099 04:38:46,400 --> 04:38:48,600 ARE THINGS YOU CAN'T GET FROM 7100 04:38:48,600 --> 04:38:50,200 THE ELECTRONIC HEALTH RECORD. 7101 04:38:50,200 --> 04:38:52,760 WE -- IN ORDER TO GET THAT AT A 7102 04:38:52,760 --> 04:38:55,360 -- AT A WAY THAT IS GOING TO BE 7103 04:38:55,360 --> 04:38:56,600 MEANINGFUL, IT IS GOING TO 7104 04:38:56,600 --> 04:38:58,760 REQUIRE A LOT OF COMMUNITY 7105 04:38:58,760 --> 04:38:59,720 ENGAGEMENT. 7106 04:38:59,720 --> 04:39:01,320 THIS IS SOMETHING THAT WE NEED 7107 04:39:01,320 --> 04:39:04,880 TO PUT MORE EFFORT TOWARDS 7108 04:39:04,880 --> 04:39:05,120 FUNDING. 7109 04:39:05,120 --> 04:39:09,080 >>YEAH. I WOULD AGREE. I 7110 04:39:09,080 --> 04:39:13,400 WOULD ALSO SAY SOMETIMES WE MAKE 7111 04:39:13,400 --> 04:39:16,520 WRONG ASSUMPTIONS AND BELIEVE WE 7112 04:39:16,520 --> 04:39:21,520 DID IT IN THE PAST THAT PERSONAL 7113 04:39:21,520 --> 04:39:24,120 PREFERENCES ARE ACQUAINTED WITH 7114 04:39:24,120 --> 04:39:26,240 ROYALTY AND IN SOME GROUPS IT IS 7115 04:39:26,240 --> 04:39:27,200 NOT; RIGHT? 7116 04:39:27,200 --> 04:39:29,400 IT IS THE GROUP PERSPECTIVE THAT 7117 04:39:29,400 --> 04:39:31,080 MATTERS AND SOMETIMES YOU MIGHT 7118 04:39:31,080 --> 04:39:33,200 DO MORE HARM THAN GOOD TO 7119 04:39:33,200 --> 04:39:35,280 ALLOWING THE INDIVIDUAL 7120 04:39:35,280 --> 04:39:37,520 PREFERENCES TO TAKE UP. AND THE 7121 04:39:37,520 --> 04:39:42,880 SECOND ASPECT OF THIS IS BECAUSE 7122 04:39:42,880 --> 04:39:45,560 BEFORE ALL OF THE WORK ON 7123 04:39:45,560 --> 04:39:47,880 SHOWING BENEFITS TO EVERYONE, IF 7124 04:39:47,880 --> 04:39:50,680 YOU DO ALLOW PREVENSS, YOU MIGHT 7125 04:39:50,680 --> 04:39:54,280 BE EXACERBATING THE 7126 04:39:54,280 --> 04:39:55,320 UNDERREPRESENTATION OF CERTAIN 7127 04:39:55,320 --> 04:39:56,200 GROUPS. 7128 04:39:56,200 --> 04:39:57,600 SO, THERE IS ALWAYS -- YOU KNOW, 7129 04:39:57,600 --> 04:40:00,920 YOU THINK YOU ARE DOING THE 7130 04:40:00,920 --> 04:40:03,040 RIGHT THING BUT MAYBE NOT IN -- 7131 04:40:03,040 --> 04:40:06,320 I THINK PERSONALLY THAT SOCIAL 7132 04:40:06,320 --> 04:40:09,600 DETERMINANTS OF HEALTH AND 7133 04:40:09,600 --> 04:40:12,680 PROXIES BEING USED PARTICULARLY 7134 04:40:12,680 --> 04:40:15,080 INCLUSION OF SELF-REPORTED RACE 7135 04:40:15,080 --> 04:40:19,360 OR PERCEIVED RACE INTO 7136 04:40:19,360 --> 04:40:21,920 ALGORITHMS IS BECAUSE WE LACK 7137 04:40:21,920 --> 04:40:25,000 IMPORTANT INFORMATION. WE ARE 7138 04:40:25,000 --> 04:40:26,000 MAKING GENERALIZATIONS THAT ARE 7139 04:40:26,000 --> 04:40:27,280 JUST VERY DAMAGING. 7140 04:40:27,280 --> 04:40:29,560 >>SO, LET ME JUST ASK YOU GUYS. 7141 04:40:29,560 --> 04:40:32,760 I'M NOT SURE IF YOU WOULD CALL 7142 04:40:32,760 --> 04:40:35,040 IT DATA LINKAGE, BUT CERTAINLY 7143 04:40:35,040 --> 04:40:37,440 USING, YOU KNOW, GEOCODING WHERE 7144 04:40:37,440 --> 04:40:40,200 A PERSON LIVES AND WORKS AND 7145 04:40:40,200 --> 04:40:41,440 SPENDS THEIR TIME. 7146 04:40:41,440 --> 04:40:43,880 THEN LINKING TO -- I MEAN, I 7147 04:40:43,880 --> 04:40:47,560 KNOW THERE ARE ENVIRONMENTAL 7148 04:40:47,560 --> 04:40:49,200 DATASETS OUT THERE THAT ARE 7149 04:40:49,200 --> 04:40:51,320 PRETTY GRANULAR WITHIN A FEW 7150 04:40:51,320 --> 04:40:53,320 BLOCKS OF A CITY; RIGHT? 7151 04:40:53,320 --> 04:40:55,160 I DON'T KNOW IF WE CALL THAT 7152 04:40:55,160 --> 04:40:58,360 DATA LINKING THAT IS ONE WAY TO 7153 04:40:58,360 --> 04:41:00,000 BRING IN SOCIAL DETERMINANTS OF 7154 04:41:00,000 --> 04:41:01,560 HEALTH THAT HISTORICALLY HAVE 7155 04:41:01,560 --> 04:41:04,240 NOT BEEN IN LOTS OF BIOMEDICAL 7156 04:41:04,240 --> 04:41:05,800 DATA SETS. 7157 04:41:05,800 --> 04:41:07,720 IS THAT -- AM I RIGHT TO THINK 7158 04:41:07,720 --> 04:41:10,120 ABOUT THAT AS A KIND OF DATA 7159 04:41:10,120 --> 04:41:10,560 LINKAGE? 7160 04:41:10,560 --> 04:41:12,880 >>I CERTAINLY DO. YOU CAN LINK 7161 04:41:12,880 --> 04:41:15,440 OTHER DATA NONPATIENT CENTERED 7162 04:41:15,440 --> 04:41:21,000 DATA BY SPACE OR TIME OR BOTH. 7163 04:41:21,000 --> 04:41:22,760 WE DO LOTS OF THAT AND 7164 04:41:22,760 --> 04:41:24,520 INCORPORATE AND AUTOMATICALLY 7165 04:41:24,520 --> 04:41:27,520 GEOCODE PATIENT DATA IN HEALTH 7166 04:41:27,520 --> 04:41:29,240 INFORMATION EXCHANGE EXPLICITLY 7167 04:41:29,240 --> 04:41:32,320 SO THAT WE CAN INCORPORATE OTHER 7168 04:41:32,320 --> 04:41:33,160 DETERMINANTS TO THAT PARTICULAR 7169 04:41:33,160 --> 04:41:35,560 PERSON LEVEL. YEAH. SO, I DO 7170 04:41:35,560 --> 04:41:36,560 CONSIDER IT LINKING. 7171 04:41:36,560 --> 04:41:39,320 >>I DO THINK THAT IT IS 7172 04:41:39,320 --> 04:41:39,800 PROBLEMATIC. 7173 04:41:39,800 --> 04:41:40,200 >>UH-HUH. 7174 04:41:40,200 --> 04:41:44,360 >>YOU CAN HAVE NEIGHBORHOODS 7175 04:41:44,360 --> 04:41:46,320 WHERE THEY ARE VERY WEALTHY AND 7176 04:41:46,320 --> 04:41:48,960 HELP LIVES THERE TOO. YOU ARE 7177 04:41:48,960 --> 04:41:50,080 THEN ASSUMING COMPLETE 7178 04:41:50,080 --> 04:41:51,840 DIFFERENCE OR KIND OF THING AND 7179 04:41:51,840 --> 04:41:56,720 I THINK, AGAIN, THIS 7180 04:41:56,720 --> 04:41:57,360 GENERALIZATIONS ACCORDING TO 7181 04:41:57,360 --> 04:41:59,840 THIS ARTIFICIAL LINKAGES IS 7182 04:41:59,840 --> 04:42:01,880 PERHAPS WHAT IS GOING TO BE 7183 04:42:01,880 --> 04:42:05,480 SOMETHING THAT AS WE GO 7184 04:42:05,480 --> 04:42:07,360 PERSONALIZE WE COULD GET RID OF. 7185 04:42:07,360 --> 04:42:08,280 >>UH-HUH. 7186 04:42:08,280 --> 04:42:09,360 >>YOU KNOW? 7187 04:42:09,360 --> 04:42:13,600 >>SO, I FEEL STRONGLY THAT MORE 7188 04:42:13,600 --> 04:42:15,040 PERSONALIZED WE WANT TO BE LAST 7189 04:42:15,040 --> 04:42:18,040 WE WANT TO USE THIS, YOU KNOW, 7190 04:42:18,040 --> 04:42:18,720 OVERALL. 7191 04:42:18,720 --> 04:42:19,760 >>NEIGHBORHOOD? 7192 04:42:19,760 --> 04:42:20,560 >>YEAH. 7193 04:42:20,560 --> 04:42:21,880 >>THAT MEASURES. 7194 04:42:21,880 --> 04:42:24,920 >>HOPEFULLY WE WON'T NEED THEM. 7195 04:42:24,920 --> 04:42:26,360 >>UH-HUH. INTERESTING. 7196 04:42:26,360 --> 04:42:28,840 >>ACTUALLY, THIS CONVERSATION 7197 04:42:28,840 --> 04:42:30,200 IS LEADING INTO SOMETHING I HAVE 7198 04:42:30,200 --> 04:42:31,360 BEEN THINKING ABOUT THROUGHOUT 7199 04:42:31,360 --> 04:42:35,720 THE DAY. I WAS RELUCTANT TO 7200 04:42:35,720 --> 04:42:36,760 RAISE IT. 7201 04:42:36,760 --> 04:42:40,640 BEFORE I DO, I SHOULD REMIND 7202 04:42:40,640 --> 04:42:43,800 PEOPLE WE SWISHED TO THIS SLIDE 7203 04:42:43,800 --> 04:42:45,560 THAT PEOPLE ONLINE CAN ASK 7204 04:42:45,560 --> 04:42:47,120 QUESTIONS AND DON'T KNOW WE HAVE 7205 04:42:47,120 --> 04:42:50,840 GOTTEN ANY IN SO FAR AND DON'T 7206 04:42:50,840 --> 04:42:53,240 THINK WE HAVE BEFORE I SAY 7207 04:42:53,240 --> 04:42:54,640 ANYTHING ELSE, REMINDING YOU IF 7208 04:42:54,640 --> 04:42:56,400 YOU HAVE QUESTIONS E-MAIL THEM 7209 04:42:56,400 --> 04:42:58,480 IN. WHAT WAS I GOING TO SAY? 7210 04:42:58,480 --> 04:43:04,520 MY POTENTIALLY CONTROVERSIAL 7211 04:43:04,520 --> 04:43:05,680 QUESTION WE TALKED ABOUT LOTS 7212 04:43:05,680 --> 04:43:07,120 WHERE SITUATIONS WHERE 7213 04:43:07,120 --> 04:43:08,960 COMMUNITIES SHOULD BE ENGAGED 7214 04:43:08,960 --> 04:43:11,000 EARLIER AND MORE FREQUENTLY AND 7215 04:43:11,000 --> 04:43:14,800 MORE ROBUSTLY TO CONTRIBUTE TO 7216 04:43:14,800 --> 04:43:16,760 DEVELOPING HOPEFULLY BETTER 7217 04:43:16,760 --> 04:43:17,000 SCIENCE. 7218 04:43:17,000 --> 04:43:20,760 WHAT I WANT TO ASK THE PANEL 7219 04:43:20,760 --> 04:43:22,440 ARE: HOW DO WE UNDERSTAND 7220 04:43:22,440 --> 04:43:23,080 SITUATIONS? 7221 04:43:23,080 --> 04:43:25,400 LIKE HOW DO WE UNDERSTAND THE 7222 04:43:25,400 --> 04:43:29,600 ETHICAL DIMENSIONS OF INCLUDING 7223 04:43:29,600 --> 04:43:31,680 COMMUNITIES, DESIRES, GOALS AND 7224 04:43:31,680 --> 04:43:32,080 PREFERENCES? 7225 04:43:32,080 --> 04:43:34,880 I CAN IMAGINE SITUATIONS WHERE 7226 04:43:34,880 --> 04:43:36,360 ACTUALLY THERE IS AT LEAST SOME 7227 04:43:36,360 --> 04:43:38,520 SUBSET OF A COMMUNITY THAT HAS 7228 04:43:38,520 --> 04:43:41,600 STRONG PREFERENCES, GOALS OR 7229 04:43:41,600 --> 04:43:43,080 DESIRES THAT FOR OTHER ETHICAL 7230 04:43:43,080 --> 04:43:46,560 REASONS WE WOULD THINK NO THE TO 7231 04:43:46,560 --> 04:43:48,800 GUIDE OUR RESEARCH. 7232 04:43:48,800 --> 04:43:52,680 WE TALKED A LOT ABOUT HOW TO DO 7233 04:43:52,680 --> 04:43:53,640 MORE OF THAT. 7234 04:43:53,640 --> 04:43:55,560 I'M WONDERING IF THERE ARE 7235 04:43:55,560 --> 04:43:57,480 SITUATIONS THAT, THAT IS A SORT 7236 04:43:57,480 --> 04:44:00,720 OF GENERAL QUESTION TO THINK 7237 04:44:00,720 --> 04:44:03,000 ABOUT IT WITH RESPECT TO DATA 7238 04:44:03,000 --> 04:44:06,080 LINKAGE THAT IS THE TOPIC OF OUR 7239 04:44:06,080 --> 04:44:06,480 PANEL. 7240 04:44:06,480 --> 04:44:07,080 >>[LAUGHING]. 7241 04:44:07,080 --> 04:44:08,880 >>ARE YOU ASKING ARE THERE 7242 04:44:08,880 --> 04:44:10,320 INSTANCES WE SHOULDN'T THINK 7243 04:44:10,320 --> 04:44:11,920 ABOUT THE PREVENSS OR INTERESTS 7244 04:44:11,920 --> 04:44:12,840 OF THE GROUP? 7245 04:44:12,840 --> 04:44:17,240 >>I'M NOT SAYING WE SHOULDN'T 7246 04:44:17,240 --> 04:44:19,760 GATHER THOSE PREFERENCES, GOALS 7247 04:44:19,760 --> 04:44:22,120 OR INTERESTS. 7248 04:44:22,120 --> 04:44:28,200 BUT, HOW -- WHAT ROLE THEY 7249 04:44:28,200 --> 04:44:30,120 SHOULD PLAY IN SHAPING RESEARCH 7250 04:44:30,120 --> 04:44:33,040 AND OFTEN WE HEARD REPEATEDLY 7251 04:44:33,040 --> 04:44:36,160 GENERALLY THEY SHOULD PLAY AN 7252 04:44:36,160 --> 04:44:38,080 IMPORTANT ROLE AND ARE THERE 7253 04:44:38,080 --> 04:44:40,120 TIMES THAT WE SHOULDN'T AND FOR 7254 04:44:40,120 --> 04:44:41,440 ETHICAL REASONS THERE IS 7255 04:44:41,440 --> 04:44:43,360 SOMETHING PROBLEMATIC THERE. 7256 04:44:43,360 --> 04:44:44,800 >>WE ANSWERED THIS QUESTION 7257 04:44:44,800 --> 04:44:47,480 WHEN WE HAVE CAPABILITY TO GO TO 7258 04:44:47,480 --> 04:44:49,320 INDIVIDUAL I THINK INDIVIDUAL 7259 04:44:49,320 --> 04:44:52,960 PREFERENCES SHOULD BE USED NOT 7260 04:44:52,960 --> 04:44:57,920 NECESSARILY LARGER CORPORATE 7261 04:44:57,920 --> 04:45:00,160 APPROACH AND DATA IN DETAILS, 7262 04:45:00,160 --> 04:45:01,400 BETTER IT WILL BE FOR 7263 04:45:01,400 --> 04:45:03,040 INDIVIDUALS IS PART OF THE 7264 04:45:03,040 --> 04:45:03,280 ANSWER. 7265 04:45:03,280 --> 04:45:07,200 >>WANT TO RESPOND TO THAT? 7266 04:45:07,200 --> 04:45:07,840 >>[LAUGHING]. 7267 04:45:07,840 --> 04:45:11,720 >>YEAH. I THINK 7268 04:45:11,720 --> 04:45:13,880 GENERALIZATIONS CAN DO HARM. WE 7269 04:45:13,880 --> 04:45:17,040 HAD TO DO IT IN THE PAST. WE 7270 04:45:17,040 --> 04:45:20,080 DIDN'T HAVE BETTER WAYS TO 7271 04:45:20,080 --> 04:45:22,320 COLLECT MORE GRANULAR DATA AND 7272 04:45:22,320 --> 04:45:23,960 SERVED MAJORITY; RIGHT? 7273 04:45:23,960 --> 04:45:28,640 NOW THAT WE TRIED TO BE MORE 7274 04:45:28,640 --> 04:45:30,760 PERSONALIZED WE CAN DO 7275 04:45:30,760 --> 04:45:32,760 COLLECTIONS AND SHOULD TRY TO, 7276 04:45:32,760 --> 04:45:34,640 TO THE EXTENT POSSIBLE TO DO 7277 04:45:34,640 --> 04:45:37,320 THEM INSTEAD OF INFERRING THINGS 7278 04:45:37,320 --> 04:45:38,760 AND CAN SAY FOR AN EXAMPLE THAT 7279 04:45:38,760 --> 04:45:41,240 I USED WHEN THE WORLD CUP WAS 7280 04:45:41,240 --> 04:45:44,560 GOING ON. I SAID NOT ALL 7281 04:45:44,560 --> 04:45:46,240 BRAZILIANS LOVE SOCCER. IT IS 7282 04:45:46,240 --> 04:45:49,720 THE MAJORITY AND IT IS THE VAST 7283 04:45:49,720 --> 04:45:51,560 MAJORITY AND SO ON. 7284 04:45:51,560 --> 04:45:53,440 IF TRYING TO BE PERSONALIZED OR, 7285 04:45:53,440 --> 04:45:56,600 YOU KNOW, YOU THINK ABOUT THE 7286 04:45:56,600 --> 04:45:59,160 ETHNICITY THAT IT GETS INCLUDED 7287 04:45:59,160 --> 04:46:01,240 IN ALGORITHMS TO INFER DIET. 7288 04:46:01,240 --> 04:46:03,360 NOW THEY ARE VEGETARIANS IN THIS 7289 04:46:03,360 --> 04:46:04,360 PARTICULAR GROUP TOO. 7290 04:46:04,360 --> 04:46:05,960 SO, I THINK THAT WHAT WE ARE 7291 04:46:05,960 --> 04:46:09,600 DOING NOW, YOU KNOW, TAKING A -- 7292 04:46:09,600 --> 04:46:11,240 10 YEARS FROM NOW AND PEOPLE 7293 04:46:11,240 --> 04:46:13,560 SAY, WELL, THEY ARE REALLY 7294 04:46:13,560 --> 04:46:13,840 PRIMITIVE. 7295 04:46:13,840 --> 04:46:14,160 >>YEAH. 7296 04:46:14,160 --> 04:46:16,200 >>THEY DIDN'T KNOW HOW TO 7297 04:46:16,200 --> 04:46:17,480 GATHER MORE SPECIFIC 7298 04:46:17,480 --> 04:46:17,800 INFORMATION. 7299 04:46:17,800 --> 04:46:18,080 >>YEAH. 7300 04:46:18,080 --> 04:46:20,800 >>I THINK THAT, YOU KNOW, SOME 7301 04:46:20,800 --> 04:46:22,760 PEOPLE WANT -- I MEAN, WE HEARD 7302 04:46:22,760 --> 04:46:25,400 IT IN CONVERSATIONS WHEN WE WERE 7303 04:46:25,400 --> 04:46:27,120 LEAVING, THEY WERE, YOU KNOW, 7304 04:46:27,120 --> 04:46:29,000 SUPER EXCITED ABOUT WHAT THEY 7305 04:46:29,000 --> 04:46:29,320 LEARNED. 7306 04:46:29,320 --> 04:46:30,880 THEY WERE REALLY EXCITED ABOUT 7307 04:46:30,880 --> 04:46:32,360 THE OPPORTUNITY THAT THE 7308 04:46:32,360 --> 04:46:34,240 EMERGING TECHNOLOGY AFFORDS FOR 7309 04:46:34,240 --> 04:46:36,240 LEARNING MORE ABOUT THEIR OWN 7310 04:46:36,240 --> 04:46:38,120 HEALTH OR IMPROVING HEALTH OF 7311 04:46:38,120 --> 04:46:39,520 THEIR OWN COMMUNITY AND SAID, 7312 04:46:39,520 --> 04:46:41,960 YOU KNOW, WHAT ELSE CAN I DO? 7313 04:46:41,960 --> 04:46:44,440 WHEN WILL YOU CONTACT ME NEXT? 7314 04:46:44,440 --> 04:46:46,440 WHEN IS NEXT OPPORTUNITY? 7315 04:46:46,440 --> 04:46:48,040 THEY WANTED REMAIN ENGAGED AND 7316 04:46:48,040 --> 04:46:50,280 OTHERS WERE LIKE, THIS IS REALLY 7317 04:46:50,280 --> 04:46:51,080 INTERESTING. THANK YOU. 7318 04:46:51,080 --> 04:46:52,200 YOU KNOW? 7319 04:46:52,200 --> 04:46:54,560 SO, YOU KNOW, THERE ARE SOME 7320 04:46:54,560 --> 04:46:56,200 PEOPLE THAT WOULD FOR SURE RAISE 7321 04:46:56,200 --> 04:46:57,280 THEIR HAND. 7322 04:46:57,280 --> 04:46:58,400 THEY WOULD WANT TO HELP SHAPE 7323 04:46:58,400 --> 04:47:00,120 THE DIRECTION OF THE RESEARCH OR 7324 04:47:00,120 --> 04:47:02,280 RESEARCH PRIORITIES. 7325 04:47:02,280 --> 04:47:05,600 SOME PEOPLE MIGHT WANT TO KNOW 7326 04:47:05,600 --> 04:47:07,880 OR GET SOMETHING BACK IN TERMS 7327 04:47:07,880 --> 04:47:10,240 OF WHAT DID YOU LEARN? 7328 04:47:10,240 --> 04:47:10,960 RIGHT? 7329 04:47:10,960 --> 04:47:12,000 WHAT DID YOU LEARN ABOUT MY 7330 04:47:12,000 --> 04:47:13,600 COMMUNITY OR LEARN ABOUT ME 7331 04:47:13,600 --> 04:47:15,800 THAT, YOU KNOW, MIGHT BE USEFUL 7332 04:47:15,800 --> 04:47:17,400 TO ME. 7333 04:47:17,400 --> 04:47:19,840 OR WHAT DID YOU LEARN TO HELP 7334 04:47:19,840 --> 04:47:21,280 ADVANCE SCIENCE IN THIS AREA 7335 04:47:21,280 --> 04:47:23,440 SORT OF GENERALLY; RIGHT? 7336 04:47:23,440 --> 04:47:24,880 PEOPLE WANT TO UNDERSTAND WHAT 7337 04:47:24,880 --> 04:47:26,680 ARE THE OPPORTUNITIES AND HAVE 7338 04:47:26,680 --> 04:47:28,080 ABILITY AND HEARD THIS WORD 7339 04:47:28,080 --> 04:47:29,680 AGENCY A LOT. 7340 04:47:29,680 --> 04:47:30,120 RIGHT? 7341 04:47:30,120 --> 04:47:32,120 ABILITY TO DETERMINE FOR 7342 04:47:32,120 --> 04:47:33,080 THEMSELVES, YOU KNOW, WHAT IS 7343 04:47:33,080 --> 04:47:34,920 THE LEVEL OF ENGAGEMENT THAT 7344 04:47:34,920 --> 04:47:36,880 THEY WANT TO HAVE. 7345 04:47:36,880 --> 04:47:40,280 WHAT ARE THE DIFFERENT 7346 04:47:40,280 --> 04:47:41,600 OPPORTUNITIES? 7347 04:47:41,600 --> 04:47:45,960 >>WE HAVE A LONG LINE. WE WILL 7348 04:47:45,960 --> 04:47:47,320 LET YOU ANSWER THIS QUESTION. 7349 04:47:47,320 --> 04:47:48,960 >>A COUPLE POINTS I WANT TO 7350 04:47:48,960 --> 04:47:51,640 MAKE. ONE, WHETHER OR NOT 7351 04:47:51,640 --> 04:47:53,560 PRECISION IS A MISNOMER 7352 04:47:53,560 --> 04:47:54,640 PERSONALIZED MEDICINE AND OF 7353 04:47:54,640 --> 04:47:57,520 COURSE CLINICIANS WERE LIKE WE 7354 04:47:57,520 --> 04:47:57,800 DELIVER. 7355 04:47:57,800 --> 04:47:59,280 >>CAN YOU BRING THE MIC CLOSER 7356 04:47:59,280 --> 04:47:59,520 TO YOU. 7357 04:47:59,520 --> 04:48:01,960 >>AS LONG AS WE ARE DEFINING AT 7358 04:48:01,960 --> 04:48:05,280 RISK CATEGORIES ALONG RACE 7359 04:48:05,280 --> 04:48:08,120 ETHNICITY DIMENSIONS IT IS MORE 7360 04:48:08,120 --> 04:48:09,120 STRATIFIED INFORMATION OR EVEN 7361 04:48:09,120 --> 04:48:10,840 RACIAL MEDICINE THAT IS FLAWED. 7362 04:48:10,840 --> 04:48:13,560 IT IS OF HOW THE DIMENSIONS ARE 7363 04:48:13,560 --> 04:48:16,760 OFTEN CALCULATED FROM 7364 04:48:16,760 --> 04:48:17,840 EIGENVALUES FROM POORLY MATCHED 7365 04:48:17,840 --> 04:48:19,480 REFERENCE GROUPS WITH SKEWED 7366 04:48:19,480 --> 04:48:21,400 WITH 5 INDIVIDUALS IN IT AND 7367 04:48:21,400 --> 04:48:22,520 PEOPLE DON'T UNDERSTAND 7368 04:48:22,520 --> 04:48:24,800 STATISTICS BEHIND BUT IT IS USED 7369 04:48:24,800 --> 04:48:26,840 AND MISUSED QUITE HEAVILY. IN 7370 04:48:26,840 --> 04:48:29,600 TERMS OF YOUR QUESTION ARE THERE 7371 04:48:29,600 --> 04:48:32,720 SCENARIOS IN WHICH SOME OF THE 7372 04:48:32,720 --> 04:48:34,040 DECISIONS ARE PERHAPS MADE ON 7373 04:48:34,040 --> 04:48:35,400 BEHALF OF COMMUNITY THAT MIGHT 7374 04:48:35,400 --> 04:48:37,000 NOT MATCH COMMUNITY VALUES AND 7375 04:48:37,000 --> 04:48:39,000 IS A QUESTION POSED QUITE A BIT 7376 04:48:39,000 --> 04:48:40,000 FOR TRIBAL MEMBERS. 7377 04:48:40,000 --> 04:48:42,200 IT IS A QUESTION THAT IS OF 7378 04:48:42,200 --> 04:48:43,960 INDIVIDUAL VERSUS COMMUNITY 7379 04:48:43,960 --> 04:48:44,240 CONSENT. 7380 04:48:44,240 --> 04:48:46,680 IT IS ALWAYS PHRASED AS A 7381 04:48:46,680 --> 04:48:47,000 VERSUS. 7382 04:48:47,000 --> 04:48:49,400 I DON'T THINK WE AS SCIENTISTS 7383 04:48:49,400 --> 04:48:50,600 CAN GRAPPLE WITH A NONBINARY. 7384 04:48:50,600 --> 04:48:54,320 YOU KNOW, THERE IS AN EXCELLENT 7385 04:48:54,320 --> 04:48:59,240 PAPER THAT IS BY -- OH, GOSH. 7386 04:48:59,240 --> 04:49:02,640 NORTHWEST FARMICO GENOMICS 7387 04:49:02,640 --> 04:49:06,080 RESEARCH NETWORK AND SEE ALASKA 7388 04:49:06,080 --> 04:49:08,320 UNIVERSITY OF ALASKA FAIRBANKS 7389 04:49:08,320 --> 04:49:09,880 AND BY [INDISCERNIBLE] AND YES. 7390 04:49:09,880 --> 04:49:12,240 SHE ACTUALLY INTERVIEWED TRIBAL 7391 04:49:12,240 --> 04:49:14,320 LEADERS AND ONE OF THE ELDERS 7392 04:49:14,320 --> 04:49:16,880 STATED IT IS NOT VERSUS BUT AND. 7393 04:49:16,880 --> 04:49:19,720 YOU NEED BOTH LEVELS OF CONSENT 7394 04:49:19,720 --> 04:49:21,560 IN ORDER TO WORK WITH TRIBAL 7395 04:49:21,560 --> 04:49:21,960 MEMBERS. 7396 04:49:21,960 --> 04:49:25,600 AND WHAT CAN HAPPEN IF YOU TRY 7397 04:49:25,600 --> 04:49:27,600 TO DRIVE VERSES ISSUES IS YOU 7398 04:49:27,600 --> 04:49:30,200 END UP UNDERMINING TRIBAL DATA 7399 04:49:30,200 --> 04:49:32,480 SOVEREIGNTY AND INSTANCE IN 7400 04:49:32,480 --> 04:49:35,040 WHICH A TRIBE THAT WAS A GROUP 7401 04:49:35,040 --> 04:49:38,040 THAT WANTED TO RECRUIT TRIBAL 7402 04:49:38,040 --> 04:49:41,120 MEMBERS AND THEY BROKERED A DEAL 7403 04:49:41,120 --> 04:49:43,400 AND VACCINE COMPANY BEFORE THEY 7404 04:49:43,400 --> 04:49:45,040 ACTUALLY OFFICIALLY GOT APPROVAL 7405 04:49:45,040 --> 04:49:46,880 FROM THE TRIBE AND TRIBE 7406 04:49:46,880 --> 04:49:48,040 DECLINED TO PARTICIPATE AND THIS 7407 04:49:48,040 --> 04:49:50,840 IS IN ACTUALLY AN AP ARTICLE 7408 04:49:50,840 --> 04:49:53,560 WHERE ONE RESEARCHER QUOTED WE 7409 04:49:53,560 --> 04:49:55,320 RESPECT TRIBAL DATA SOVEREIGNTY 7410 04:49:55,320 --> 04:49:56,840 AND PUT THEM OUTSIDE OF THE 7411 04:49:56,840 --> 04:50:01,040 TRIBAL BORDER AND THIS IS A 7412 04:50:01,040 --> 04:50:01,720 SITUATION WHERE SOMETIMES THESE 7413 04:50:01,720 --> 04:50:03,600 ARE NOT UP TO RESEARCHERS TO 7414 04:50:03,600 --> 04:50:06,240 DECIDE AND SOMETIMES NO RESEARCH 7415 04:50:06,240 --> 04:50:08,280 NULL ENGAGEMENT MODEL AND NULL 7416 04:50:08,280 --> 04:50:10,880 RESEARCH MODEL IS A BETTER MODEL 7417 04:50:10,880 --> 04:50:14,880 IF IT WILL MITIGATE HARMS AND 7418 04:50:14,880 --> 04:50:16,680 WHEN YOU THINK ABOUT THAT DO NO 7419 04:50:16,680 --> 04:50:18,400 HARM OR REDUCE HARM AND STATING 7420 04:50:18,400 --> 04:50:20,280 TO THAT WE HAVE TO THINK ABOUT 7421 04:50:20,280 --> 04:50:22,480 IT MORE CAREFULLY THINKING ABOUT 7422 04:50:22,480 --> 04:50:25,560 CONDUCTING RESEARCH WE WANT TO 7423 04:50:25,560 --> 04:50:25,800 CONDUCT. 7424 04:50:25,800 --> 04:50:26,920 >>THANK YOU. SEVERAL 7425 04:50:26,920 --> 04:50:28,920 QUESTIONERS ARE IN THE ROOM. 7426 04:50:28,920 --> 04:50:29,480 STEP RIGHT UP. 7427 04:50:29,480 --> 04:50:33,280 >>OKAY. GOOD AFTERNOON 7428 04:50:33,280 --> 04:50:37,000 EVERYONE COLBY BROWN DIRECTOR AT 7429 04:50:37,000 --> 04:50:38,840 PYXIS PARTNERS WILL TRY TO BE 7430 04:50:38,840 --> 04:50:40,040 SUCCINCT AND THANK YOU FOR 7431 04:50:40,040 --> 04:50:41,600 INFORMATION ON THIS PANEL. I'M 7432 04:50:41,600 --> 04:50:43,720 THINKING BACK TO THE WORK WE DID 7433 04:50:43,720 --> 04:50:45,520 IN COMMUNITY CONVERSATIONS 7434 04:50:45,520 --> 04:50:47,400 SPECIFICALLY AROUND TOPIC 3 AND 7435 04:50:47,400 --> 04:50:49,440 DATA LINKAGE AND AGGREGATION. 7436 04:50:49,440 --> 04:50:51,040 SO, JUST ONE QUICK QUESTION FOR 7437 04:50:51,040 --> 04:50:53,240 ANYONE IN THE ROOM. 7438 04:50:53,240 --> 04:50:56,240 IS THERE AN ANSWER OUT THERE TO 7439 04:50:56,240 --> 04:51:00,080 HOW MANY DATA BASES AND HOW MANY 7440 04:51:00,080 --> 04:51:02,000 -- A GENERAL NUMBER OF WHAT IS 7441 04:51:02,000 --> 04:51:04,000 HAPPENING IN THAT SPACE? 7442 04:51:04,000 --> 04:51:07,480 BECAUSE IN THE CONVERSATIONS 7443 04:51:07,480 --> 04:51:11,080 THAT I WAS PRIVY TO LISTENING 7444 04:51:11,080 --> 04:51:13,440 TO, THAT IS AN ANSWER THAT THE 7445 04:51:13,440 --> 04:51:13,800 PUBLIC WANTS. 7446 04:51:13,800 --> 04:51:15,840 WE OBVIOUSLY HAD A SENSE THAT IS 7447 04:51:15,840 --> 04:51:17,520 A LARGE NUMBER WE COULDN'T GIVE 7448 04:51:17,520 --> 04:51:19,280 THEM. AFTER LISTENING TO ALL OF 7449 04:51:19,280 --> 04:51:21,680 YOU TODAY ON PANEL 2 AND 3, AND 7450 04:51:21,680 --> 04:51:24,160 MY COMMUNITY ENGAGEMENT SPACE, 7451 04:51:24,160 --> 04:51:28,400 I'M COMPLETELY FREAKED OUT. 7452 04:51:28,400 --> 04:51:30,520 I THINK THAT ESPECIALLY AS WE 7453 04:51:30,520 --> 04:51:34,160 THINK ABOUT MARGINALIZED 7454 04:51:34,160 --> 04:51:36,160 COMMUNITIES LOTS OF ANSWERS 7455 04:51:36,160 --> 04:51:39,440 GIVEN TODAY THAT WHILE THEY ARE 7456 04:51:39,440 --> 04:51:41,280 CERTAINLY TRUE AND IN MY 7457 04:51:41,280 --> 04:51:42,200 EXPERIENCE TALKING WITH LOTS OF 7458 04:51:42,200 --> 04:51:44,400 DIFFERENT PEOPLE THAT ANSWER 7459 04:51:44,400 --> 04:51:46,080 WOULD THEN BE NO IN TERMS OF AND 7460 04:51:46,080 --> 04:51:48,120 NO MIGHT BE OKAY FOR CERTAIN 7461 04:51:48,120 --> 04:51:49,600 PEOPLE, OF COURSE. 7462 04:51:49,600 --> 04:51:52,480 IF TRYING TO BRIDGE DISPARITIES 7463 04:51:52,480 --> 04:51:54,080 AND WE CAN'T DR. LYMAN SAID 7464 04:51:54,080 --> 04:51:55,680 SOMETHING ABOUT HAVING A 7465 04:51:55,680 --> 04:51:58,480 DATABASE OF, MY GOODNESS. 7466 04:51:58,480 --> 04:51:59,080 STATISTICAL TOOLS AND WOULD 7467 04:51:59,080 --> 04:52:00,440 THINK THAT YOU WOULD WANT TO DO 7468 04:52:00,440 --> 04:52:03,240 THE SAME THING WITH DATABASES AT 7469 04:52:03,240 --> 04:52:05,160 A MINIMUM THAT IS INFORMATION 7470 04:52:05,160 --> 04:52:08,360 THAT COMMUNITIES AND INDIVIDUALS 7471 04:52:08,360 --> 04:52:12,200 SHOULD HAVE. IT DOESN'T FEEL 7472 04:52:12,200 --> 04:52:13,400 CLEAR. JUST TO ANSWER THAT. 7473 04:52:13,400 --> 04:52:14,680 >>I THINK ANSWER TO YOUR 7474 04:52:14,680 --> 04:52:16,480 QUESTION IS THE NUMBER OF 7475 04:52:16,480 --> 04:52:19,960 DATABASES OUT THERE IS N. 7476 04:52:19,960 --> 04:52:21,440 TOMORROW IT WILL BE N2 AND AFTER 7477 04:52:21,440 --> 04:52:23,040 THAT WILL BE -- RIGHT? 7478 04:52:23,040 --> 04:52:23,640 IT IS GROWING. 7479 04:52:23,640 --> 04:52:24,680 >>RIGHT. 7480 04:52:24,680 --> 04:52:26,680 >>TOED IS THE SMALLEST NUMBER 7481 04:52:26,680 --> 04:52:28,120 OF DATABASES WE WILL EVER SEE IN 7482 04:52:28,120 --> 04:52:28,760 OUR LIFETIME. 7483 04:52:28,760 --> 04:52:29,880 >>OKAY. 7484 04:52:29,880 --> 04:52:31,400 >>IT WILL GROW FROM HERE. 7485 04:52:31,400 --> 04:52:33,440 SO, I DON'T THINK THERE IS A 7486 04:52:33,440 --> 04:52:34,320 GOOD ANSWER. 7487 04:52:34,320 --> 04:52:36,400 WE DO -- OUR DATA CORE THAT 7488 04:52:36,400 --> 04:52:38,440 MANAGES RESEARCH DATA AND HEALTH 7489 04:52:38,440 --> 04:52:40,360 INFORMATION EXCHANGE MAINTAINS A 7490 04:52:40,360 --> 04:52:43,360 LIST OF DOZENS UPON DOZENS IF 7491 04:52:43,360 --> 04:52:45,600 NOT MORE DATA SETS WE CAN THINK 7492 04:52:45,600 --> 04:52:47,600 ABOUT LINKING TO FROM CENSUS TO 7493 04:52:47,600 --> 04:52:51,280 COMMERCIAL DATA SETS TO MEDICARE 7494 04:52:51,280 --> 04:52:55,920 DATA SETS TO MEDICAID TO BMV TO 7495 04:52:55,920 --> 04:52:57,240 FINANCIAL CREDIT BUREAU DATA AND 7496 04:52:57,240 --> 04:53:00,120 SO MUCH TO PARTNERS AT HEALTH 7497 04:53:00,120 --> 04:53:01,480 SYSTEMS DATA SETS THAT IS WHAT 7498 04:53:01,480 --> 04:53:03,240 IS HAPPENING IS THAT WE ARE 7499 04:53:03,240 --> 04:53:06,080 SEEING A CONFLUENCE OF DATASETS 7500 04:53:06,080 --> 04:53:08,040 THAT ARE BEING JOINED TOGETHER 7501 04:53:08,040 --> 04:53:09,640 NOW. BECAUSE THE LARGER THE 7502 04:53:09,640 --> 04:53:12,360 DATA, THEORETICALLY, THE MORE 7503 04:53:12,360 --> 04:53:14,160 INSIGHT OR SMALLER OUR 7504 04:53:14,160 --> 04:53:15,080 CONFIDENCE MAYBE. 7505 04:53:15,080 --> 04:53:17,800 BUT THE MORE INSIGHT THAT WE ARE 7506 04:53:17,800 --> 04:53:18,880 SUPPOSEDLY ABLE TO GATHER. 7507 04:53:18,880 --> 04:53:21,400 THERE IS A RACE TOED TO CREATE 7508 04:53:21,400 --> 04:53:23,200 VERY LARGE DATA SETS. 7509 04:53:23,200 --> 04:53:24,600 SO, IT IS -- THE ANSWER TO YOUR 7510 04:53:24,600 --> 04:53:26,240 QUESTION IS THAT IT IS 7511 04:53:26,240 --> 04:53:28,200 DEFINITELY GROWING AND WON'T GET 7512 04:53:28,200 --> 04:53:28,480 SMALLER. 7513 04:53:28,480 --> 04:53:29,800 >>CAN I -- 7514 04:53:29,800 --> 04:53:30,800 >>ONE MORE THING THEN. 7515 04:53:30,800 --> 04:53:34,360 I THINK THIS TIES INTO SOMETHING 7516 04:53:34,360 --> 04:53:36,600 THAT DR. MACHADO MENTIONED THAT 7517 04:53:36,600 --> 04:53:37,720 I THOUGHT WAS REALLY 7518 04:53:37,720 --> 04:53:39,080 INTERESTING. SOMEONE ON ONE OF 7519 04:53:39,080 --> 04:53:40,720 THE PANELS MENTIONED ABOUT HOW 7520 04:53:40,720 --> 04:53:42,880 QUICKLY TECHNOLOGY IS MOVING AND 7521 04:53:42,880 --> 04:53:45,600 THEN THE NIH TRYING TO KEEP 7522 04:53:45,600 --> 04:53:46,920 PACE; RIGHT? 7523 04:53:46,920 --> 04:53:49,520 SO, SOMETHING VERY SIMPLE THAT 7524 04:53:49,520 --> 04:53:50,920 WAS MENTIONED ABOUT, WELL, 7525 04:53:50,920 --> 04:53:54,000 THINGS ARE NOT REALLY EVER 7526 04:53:54,000 --> 04:53:55,520 COMPLETELY DEIDENTIFIED; RIGHT? 7527 04:53:55,520 --> 04:53:57,000 I CAN SAY FROM DIFFERENT 7528 04:53:57,000 --> 04:53:59,800 PROJECTS I HAVE BEEN A PART OF 7529 04:53:59,800 --> 04:54:00,920 IN TERMS OF COMMUNICATING 7530 04:54:00,920 --> 04:54:02,360 PROJECTS TO THE COMMUNITY, 7531 04:54:02,360 --> 04:54:04,280 SOMETHING AS SIMPLE AS THAT WE 7532 04:54:04,280 --> 04:54:05,800 HAVE NOT BEEN AS TRANSPARENT AS 7533 04:54:05,800 --> 04:54:07,080 WE SHOULD BE WITH COMMUNITIES 7534 04:54:07,080 --> 04:54:09,080 THAT IS SOMETHING THAT COULD BE 7535 04:54:09,080 --> 04:54:09,800 CHANGED TODAY. 7536 04:54:09,800 --> 04:54:11,880 SO, MOMENTS LIKE THAT, THAT IS 7537 04:54:11,880 --> 04:54:14,320 -- THANK YOU FOR JUST SAYING 7538 04:54:14,320 --> 04:54:15,800 THAT OUT LOUD. 7539 04:54:15,800 --> 04:54:20,160 WHY ARE WE NOT AS A RESEARCH 7540 04:54:20,160 --> 04:54:21,760 ENTERPRISE NOT BEING -- THERE 7541 04:54:21,760 --> 04:54:25,000 ARE THINGS WE CAN'T NECESSARILY 7542 04:54:25,000 --> 04:54:27,000 DOWN THE LINE MAYBE CONTROL FOR. 7543 04:54:27,000 --> 04:54:28,960 THERE ARE VERY SIMPLE POLICY 7544 04:54:28,960 --> 04:54:30,640 THINGS LIKE THAT, THAT CAN HELP 7545 04:54:30,640 --> 04:54:32,240 BUILD TRUST. WE ARE NOT DOING 7546 04:54:32,240 --> 04:54:32,560 THAT. 7547 04:54:32,560 --> 04:54:34,600 I WANTED TO PUT OUT THERE THAT 7548 04:54:34,600 --> 04:54:37,640 MOST PEOPLE THAT I HAVE SPOKEN 7549 04:54:37,640 --> 04:54:39,600 TO WHETHER RELATED TO ALL OF US 7550 04:54:39,600 --> 04:54:41,760 OR OTHER THINGS WOULD NOT MAKE 7551 04:54:41,760 --> 04:54:43,960 THAT DISTINCTION AND THEY THINK 7552 04:54:43,960 --> 04:54:45,960 DEIDENTIFIED MEANS DEIDENTIFIED. 7553 04:54:45,960 --> 04:54:47,920 SO, WE COULD DO BETTER TODAY I 7554 04:54:47,920 --> 04:54:50,600 THINK ON SOME OF THE ISSUES. 7555 04:54:50,600 --> 04:54:51,600 SO, OKAY. 7556 04:54:51,600 --> 04:54:54,960 >>LET ME JUST REPLY TO THAT. I 7557 04:54:54,960 --> 04:54:57,240 THINK THAT YOU ARE ABSOLUTELY 7558 04:54:57,240 --> 04:54:57,480 RIGHT. 7559 04:54:57,480 --> 04:55:00,800 WHAT IS BEING PORTRAYED, YOU 7560 04:55:00,800 --> 04:55:02,600 KNOW, TO MANY COMMUNITIES IT IS 7561 04:55:02,600 --> 04:55:05,720 -- WELL, YOU HAVE THIS DATASET. 7562 04:55:05,720 --> 04:55:07,200 NO ONE WILL FIND YOUR NAME OUT 7563 04:55:07,200 --> 04:55:09,040 OF THE DATASET AND IS NO THE 7564 04:55:09,040 --> 04:55:12,640 WHAT IS A SO CALLED ATTACK 7565 04:55:12,640 --> 04:55:14,760 MOTTO. ATTACK MOTTO IS I KNOW 7566 04:55:14,760 --> 04:55:16,280 YOU AND WANT TO KNOW SOMETHING 7567 04:55:16,280 --> 04:55:19,120 ABOUT YOU AND WILL GO THROUGH 7568 04:55:19,120 --> 04:55:20,720 EVERY ROLE OF THE DATABASE AND 7569 04:55:20,720 --> 04:55:21,840 READ OUT EVERYTHING THAT THERE 7570 04:55:21,840 --> 04:55:23,360 IS TO KNOW ABOUT YOU. THAT IS 7571 04:55:23,360 --> 04:55:25,640 THE KIND OF THING I THINK NEEDS 7572 04:55:25,640 --> 04:55:27,280 TO BE VERY EXPLICIT TO THOSE 7573 04:55:27,280 --> 04:55:30,240 WHOSE DATA ARE GOING TO BE THOSE 7574 04:55:30,240 --> 04:55:31,800 ROLES. 7575 04:55:31,800 --> 04:55:34,400 AND, AGAIN, IF YOU LINK THE ROLE 7576 04:55:34,400 --> 04:55:36,320 WILL BE EVEN LONGER WILL BE 7577 04:55:36,320 --> 04:55:37,400 EASIER TO FIND YOU. 7578 04:55:37,400 --> 04:55:37,680 >>YEAH. 7579 04:55:37,680 --> 04:55:40,320 >>YEAH. SO, I WANTED TO LET 7580 04:55:40,320 --> 04:55:41,920 PEOPLE KNOW WE HAVE BEEN GIVEN 7581 04:55:41,920 --> 04:55:43,080 10 MORE MINUTES . 7582 04:55:43,080 --> 04:55:45,520 WE ARE AT END OF OUR OFFICIAL 7583 04:55:45,520 --> 04:55:47,240 TIME NOW. WE HAVE BEEN GIVEN 10 7584 04:55:47,240 --> 04:55:48,480 MORE MINUTES. 7585 04:55:48,480 --> 04:55:50,520 >>LISA LEHMANN. THANK YOU FOR 7586 04:55:50,520 --> 04:55:52,280 A RICH CONVERSATION ON THIS 7587 04:55:52,280 --> 04:55:53,320 IMPORTANT TOPIC. 7588 04:55:53,320 --> 04:55:57,960 MY QUESTION HAS TO DO WITH THE 7589 04:55:57,960 --> 04:56:00,000 -- THE SUGGESTION EARLIER THAT 7590 04:56:00,000 --> 04:56:03,680 WE SHOULD GET INDIVIDUAL CONCEPT 7591 04:56:03,680 --> 04:56:04,880 WHERE POSSIBLE. 7592 04:56:04,880 --> 04:56:08,520 AND FOR DATA LINKAGE. 7593 04:56:08,520 --> 04:56:10,840 I THINK THAT RESEARCH COMMUNITY, 7594 04:56:10,840 --> 04:56:13,080 AT LEAST IN THE UNITED STATES, 7595 04:56:13,080 --> 04:56:16,000 THEY SEEM TO HAVE EMBRACED THE 7596 04:56:16,000 --> 04:56:19,760 ILLUSION OF DEIDENTIFICATION IN 7597 04:56:19,760 --> 04:56:22,760 ORDER TO -- WITH THE PUSHBACK 7598 04:56:22,760 --> 04:56:24,680 BEING THAT IT IS NOT FEASIBLE. 7599 04:56:24,680 --> 04:56:28,520 THERE IS TOO MUCH OF A BURDEN TO 7600 04:56:28,520 --> 04:56:33,560 GETTING INDIVIDUAL CONSENT FOR 7601 04:56:33,560 --> 04:56:36,320 THIS USE OF DATA AND CURIOUS 7602 04:56:36,320 --> 04:56:37,640 ABOUT PERSPECTIVES HOW WE CAN 7603 04:56:37,640 --> 04:56:39,800 CHANGE NORMS OR SHOULD WE TRY TO 7604 04:56:39,800 --> 04:56:41,720 CHANGE THOSE NORMS? 7605 04:56:41,720 --> 04:56:45,440 ARE TRADEOFFS WORTH IT? 7606 04:56:45,440 --> 04:56:47,200 IS THE RISK SIGNIFICANT ENOUGH 7607 04:56:47,200 --> 04:56:49,600 WE SHOULD BE FOCUSED ON 7608 04:56:49,600 --> 04:56:50,880 INDIVIDUAL CONSENT AT INDIVIDUAL 7609 04:56:50,880 --> 04:56:54,120 LEVEL IN A MEANINGFUL WAY? 7610 04:56:54,120 --> 04:56:59,320 OR IS IT NOT WORTH IT? 7611 04:56:59,320 --> 04:57:00,880 JUST CURIOUS WHAT PEOPLE'S 7612 04:57:00,880 --> 04:57:02,120 THOUGHTS ARE ON THAT. 7613 04:57:02,120 --> 04:57:04,160 >>TECHNICALLY, IT IS FEASIBLE 7614 04:57:04,160 --> 04:57:07,720 AND HOW MUCH IT COSTS WILL DE 7615 04:57:07,720 --> 04:57:08,040 PE 7616 04:57:08,040 --> 04:57:10,120 DEP 7617 04:57:10,120 --> 04:57:10,360 DEPEND. 7618 04:57:10,360 --> 04:57:13,600 IF IT IS A LOT, IT COSTS LESS, 7619 04:57:13,600 --> 04:57:14,640 RIGHT? EVERYONE DOING THIS ALL 7620 04:57:14,640 --> 04:57:17,280 THE TIME. I THINK THERE IS A 7621 04:57:17,280 --> 04:57:19,440 COST ISSUE TO BE LOOKED AT BUT 7622 04:57:19,440 --> 04:57:22,840 THAT IT IS PRACTICAL TO ASK YOU 7623 04:57:22,840 --> 04:57:24,800 ABOUT CERTAIN THINGS, YOU KNOW, 7624 04:57:24,800 --> 04:57:26,880 INCLUDING DO YOU WANT TO 7625 04:57:26,880 --> 04:57:28,520 PARTICIPATE IN RESEARCH AND MUST 7626 04:57:28,520 --> 04:57:30,400 BE PRACTICAL TO ASK IF YOU WANT 7627 04:57:30,400 --> 04:57:34,560 YOUR DATA LINKAGE OR NOT. 7628 04:57:34,560 --> 04:57:37,080 RIGHT? 7629 04:57:37,080 --> 04:57:40,200 >>I WOULD MAYBE SUBMIT THERE 7630 04:57:40,200 --> 04:57:42,160 VERY MUCH IS -- TECHNICAL 7631 04:57:42,160 --> 04:57:44,200 FEASIBILITY AND ECONOMIC 7632 04:57:44,200 --> 04:57:45,840 FEASIBILITY ARE DIFFERENT THINGS 7633 04:57:45,840 --> 04:57:47,760 AND SOME PEOPLE MIGHT ARGUE WE 7634 04:57:47,760 --> 04:57:50,480 -- WITH THE AMOUNT OF VOLUME OF 7635 04:57:50,480 --> 04:57:53,600 PATIENTS WE HAVE ACCESS TO OUR 7636 04:57:53,600 --> 04:57:56,560 IRB THAT HAS ACCEPTED THE 7637 04:57:56,560 --> 04:57:58,360 STATEMENT THAT IF WE WERE TO GO 7638 04:57:58,360 --> 04:58:00,040 OUT AND CONSENT EACH PERSON 7639 04:58:00,040 --> 04:58:02,120 INDIVIDUALLY THAT WOULD CREATE A 7640 04:58:02,120 --> 04:58:04,120 PAPER TRAIL THAT WAS ACTUALLY 7641 04:58:04,120 --> 04:58:07,320 INCREASING THE RISK FOR 7642 04:58:07,320 --> 04:58:08,880 RE-IDENTIFICATION OR EXPOSURE. 7643 04:58:08,880 --> 04:58:15,080 OUR IRB BUYS THAT EVERY ONE OF 7644 04:58:15,080 --> 04:58:16,520 POPULATION PROSPECTIVE DOING 7645 04:58:16,520 --> 04:58:18,400 TRIAL RECRUITMENT OBVIOUSLY THAT 7646 04:58:18,400 --> 04:58:21,600 IS A PATIENT LEVEL AND IF DOING 7647 04:58:21,600 --> 04:58:23,400 DEIDENTIFIED POPULATION LEVEL 7648 04:58:23,400 --> 04:58:25,600 LARGELY RETROSPECT DATABASE WE 7649 04:58:25,600 --> 04:58:27,560 ARE NOT CONSENTING PATIENTS. 7650 04:58:27,560 --> 04:58:29,720 >>NOT CONSENTING FOR RESEARCH 7651 04:58:29,720 --> 04:58:30,800 OR FOR LINKAGE. 7652 04:58:30,800 --> 04:58:31,480 >>RIGHT. 7653 04:58:31,480 --> 04:58:33,360 >>IT IS IMPORTANT TO 7654 04:58:33,360 --> 04:58:34,280 ACKNOWLEDGE THAT CURRENT NORM. 7655 04:58:34,280 --> 04:58:34,960 >>UH-HUH. 7656 04:58:34,960 --> 04:58:38,120 >>AND ASK OURSELVES ARE WE 7657 04:58:38,120 --> 04:58:39,480 SATISFIED WITH THAT? 7658 04:58:39,480 --> 04:58:41,760 BE HONEST WITH THE PUBLIC IF 7659 04:58:41,760 --> 04:58:44,760 THAT IS -- WHAT ARE REASONS FOR 7660 04:58:44,760 --> 04:58:46,960 THAT ARC AND WHY WE ARE NOT 7661 04:58:46,960 --> 04:58:50,880 GOING TOWARDS MORE MEANINGFUL 7662 04:58:50,880 --> 04:58:51,520 INDIVIDUAL CONSENT. 7663 04:58:51,520 --> 04:58:53,840 >>SO, I HAVE STATED A FEW TIMES 7664 04:58:53,840 --> 04:58:56,080 IN PAST TALKS THAT 7665 04:58:56,080 --> 04:58:58,360 DEIDENTIFICATION IS KIND OF A 7666 04:58:58,360 --> 04:59:00,640 MYTH. THERE HAVE BEEN MANY 7667 04:59:00,640 --> 04:59:02,840 BIOINFORMATICS PAPERS SHOWING TO 7668 04:59:02,840 --> 04:59:05,040 EIDENTIFY GENOMICS DATA 7669 04:59:05,040 --> 04:59:07,120 PARTICULARLY USE FOR PARAMETERS 7670 04:59:07,120 --> 04:59:10,080 AND THAT THE -- WE SHOULD LET NO 7671 04:59:10,080 --> 04:59:12,920 -- LET PARTICIPANTS KNOW ACTUAL 7672 04:59:12,920 --> 04:59:14,160 RISKS NOT INFORMING THEM ABOUT 7673 04:59:14,160 --> 04:59:17,040 ACTUAL RISKS IS FAILURE OF 7674 04:59:17,040 --> 04:59:20,320 INFORMED CONSENT AND FAILURE OF 7675 04:59:20,320 --> 04:59:21,840 UPHOLDING BELMONT PRINCIPLES WE 7676 04:59:21,840 --> 04:59:23,520 PUT IN PLACE FOR SEVERAL DECADES 7677 04:59:23,520 --> 04:59:25,520 AND WANT TO STATE HOW WE 7678 04:59:25,520 --> 04:59:28,560 CLASSIFY DATA DIFFERS BY COUNTRY 7679 04:59:28,560 --> 04:59:32,200 AND CONTEXT ALSO. HUMAN GUT 7680 04:59:32,200 --> 04:59:34,720 MICROBIOME DATA IN US IS 7681 04:59:34,720 --> 04:59:36,400 CONSIDERED NON-HUMAN SUBJECTS 7682 04:59:36,400 --> 04:59:38,600 DATA IN NEW ZEALAND AND 7683 04:59:38,600 --> 04:59:41,000 AUSTRALIA THAT IS HUMAN SUBJECTS 7684 04:59:41,000 --> 04:59:43,360 DATA AND ARBITRARY NATURE 7685 04:59:43,360 --> 04:59:45,080 CLASSIFYING AND LEGISLATING DATA 7686 04:59:45,080 --> 04:59:46,920 AND I WANT TO REMIND PEOPLE TOO 7687 04:59:46,920 --> 04:59:48,360 THAT I COME FROM AN INSTITUTION 7688 04:59:48,360 --> 04:59:53,560 THAT HAD A VERY MASSIVE AND 7689 04:59:53,560 --> 04:59:55,240 PUBLIC NOT EACH A WRIST SLAP BUT 7690 04:59:55,240 --> 04:59:56,960 SLAP ACROSS FACE ABOUT WHAT CAN 7691 04:59:56,960 --> 04:59:59,200 HAPPEN WHEN YOU DON'T PROPERLY 7692 04:59:59,200 --> 05:00:00,440 CONSENT TO PARTICIPANTS ABOUT 7693 05:00:00,440 --> 05:00:02,200 WHAT THEIR DATA IS ACTUALLY 7694 05:00:02,200 --> 05:00:07,440 BEING USED FOR AND HAVASUPAI 7695 05:00:07,440 --> 05:00:10,480 NATION SUING NEVADA BOARD OF 7696 05:00:10,480 --> 05:00:11,480 REGENTS COULD HAVE BANKRUPT 7697 05:00:11,480 --> 05:00:13,680 TLOOED STATE UNIVERSITIES IN 7698 05:00:13,680 --> 05:00:17,920 ARIZONA THAT LED TO $700,000 7699 05:00:17,920 --> 05:00:20,320 SETTLEMENT ORDER AND -- TRIBAL 7700 05:00:20,320 --> 05:00:22,560 NATIONS LANDS AND CAME AT 7701 05:00:22,560 --> 05:00:25,040 PIVOTAL TIME TRIBAL NATIONS 7702 05:00:25,040 --> 05:00:28,760 AROUND WORLD QUESTIONS PLACE IN 7703 05:00:28,760 --> 05:00:31,080 GENOMICS RESEARCH AND THERE IS 7704 05:00:31,080 --> 05:00:32,560 GENOMICS MORE ATORIA IN PLACE 7705 05:00:32,560 --> 05:00:35,840 AND WILL SAY UNFORTUNATELY WITH 7706 05:00:35,840 --> 05:00:40,240 BIG DATA ERA HARMONIZATION AND 7707 05:00:40,240 --> 05:00:41,760 SHIFT BACK TO SHIFTING NORMS 7708 05:00:41,760 --> 05:00:44,480 THAT WERE SHOWN TO BE 7709 05:00:44,480 --> 05:00:45,640 PROBLEMATIC IN THE PAST THAT 7710 05:00:45,640 --> 05:00:47,880 MANY VERSIONS OF THIS CASE ARE 7711 05:00:47,880 --> 05:00:49,200 HAPPENING ALL THE TIME AND LAST 7712 05:00:49,200 --> 05:00:51,480 YEAR ALONE I WAS ASKED TO 7713 05:00:51,480 --> 05:00:53,480 CONSULT ON THREE DIFFERENT 7714 05:00:53,480 --> 05:00:55,600 INSTANCES WHERE RESEARCHERS 7715 05:00:55,600 --> 05:00:57,560 SHARED DATA SETS WITH 7716 05:00:57,560 --> 05:00:59,680 COLLABORATORS AND WITH GRADUATE 7717 05:00:59,680 --> 05:01:02,000 STUDENTS IN MANY CASES WITHOUT 7718 05:01:02,000 --> 05:01:03,560 PROPERLY DULY CONCEPTING 7719 05:01:03,560 --> 05:01:04,440 COMMUNITIES ABOUT THIS TYPE OF 7720 05:01:04,440 --> 05:01:07,120 WORK AND IS GOING TO BLOW UP AT 7721 05:01:07,120 --> 05:01:09,720 SOME POINT IN THE FUTURE. 7722 05:01:09,720 --> 05:01:11,120 IF IT HAS NOT ALREADY. 7723 05:01:11,120 --> 05:01:14,040 WE HAVE TO THINK ABOUT THIS IN 7724 05:01:14,040 --> 05:01:15,920 TERMS OF THE TRUST AND DISTRUST 7725 05:01:15,920 --> 05:01:17,600 THAT IS ALREADY THAT WE ARE 7726 05:01:17,600 --> 05:01:19,400 GRAPPLING WITH IN TERMS OF ROLES 7727 05:01:19,400 --> 05:01:20,880 OF SCIENCE IN WORKING WITH THIS 7728 05:01:20,880 --> 05:01:23,040 TYPE OF DATA. WE HAVE TO THINK 7729 05:01:23,040 --> 05:01:24,320 ABOUT MOVING FORWARD IN WAYS 7730 05:01:24,320 --> 05:01:26,920 THAT ARE RESPECTFUL OF UTILIZING 7731 05:01:26,920 --> 05:01:28,840 DATA WE HAVE ON HAND AND WE ARE 7732 05:01:28,840 --> 05:01:30,520 ASKING OF NEW PARTICIPANTS THAT 7733 05:01:30,520 --> 05:01:37,160 ARE CONTRIBUTING DATA. 7734 05:01:37,160 --> 05:01:40,400 >>HI. MILDRED SHOW AND GETTING 7735 05:01:40,400 --> 05:01:42,600 BACK TO PILAR'S ORIGINAL 7736 05:01:42,600 --> 05:01:44,080 QUESTION ABOUT PREFERENCES AND 7737 05:01:44,080 --> 05:01:46,320 WHAT TO DO ABOUT PREVENSS AND 7738 05:01:46,320 --> 05:01:49,200 WHEN WE OFTEN ASK ABOUT PEOPLE'S 7739 05:01:49,200 --> 05:01:50,280 PRECHSS WE FIND THEY ARE NOT 7740 05:01:50,280 --> 05:01:51,600 ALWAYS THE SAME AND WHAT DO WE 7741 05:01:51,600 --> 05:01:52,840 DO WITH IT THAT? 7742 05:01:52,840 --> 05:01:56,080 I WANT TO PUT A MODEST PROPOSAL 7743 05:01:56,080 --> 05:01:57,280 OUT TO THINK ABOUT AS KRYSTAL 7744 05:01:57,280 --> 05:01:59,800 WAS SAYING NO THE THIS SORT OF 7745 05:01:59,800 --> 05:02:01,240 BINARY AND COMMUNITY 7746 05:02:01,240 --> 05:02:03,000 PERSPECTIVES AND RESEARCHER 7747 05:02:03,000 --> 05:02:06,760 PERSPECTIVES AND THINKING ABOUT 7748 05:02:06,760 --> 05:02:08,880 IT MORE BROADLY BECAUSE OF ALL 7749 05:02:08,880 --> 05:02:11,440 THESE DECISIONS THAT HAVE TO BE 7750 05:02:11,440 --> 05:02:13,880 MADE THAT ALL RESULT IN 7751 05:02:13,880 --> 05:02:17,360 TRADEOFFS THAT TRADEOFFS FALL 7752 05:02:17,360 --> 05:02:19,240 DIFFERENTLY ON DIFFERENT GROUPS. 7753 05:02:19,240 --> 05:02:22,640 CLINICIANS AND HEALTH 7754 05:02:22,640 --> 05:02:25,200 ADMINISTRATORS AND EVERYBODY. 7755 05:02:25,200 --> 05:02:27,320 SO, I THINK OR WANT TO PROPOSE 7756 05:02:27,320 --> 05:02:29,240 THINKING ABOUT PREVENSS THAT WE 7757 05:02:29,240 --> 05:02:31,000 DON'T JUST THINK ABOUT PREVENSS 7758 05:02:31,000 --> 05:02:33,040 BUT THINK ABOUT TRADEOFFS OR 7759 05:02:33,040 --> 05:02:34,920 PREVENSS IN THE LIGHT OF 7760 05:02:34,920 --> 05:02:36,560 TRADEOFFS AND ENCOURAGING 7761 05:02:36,560 --> 05:02:38,560 DIFFERENT STAKEHOLDER 7762 05:02:38,560 --> 05:02:39,560 COMMUNITIES UNDERSTANDING WHAT 7763 05:02:39,560 --> 05:02:41,680 ARE TRADEOFFS FOR OTHER 7764 05:02:41,680 --> 05:02:44,840 STAKEHOLDERS AS WELL AS FOR 7765 05:02:44,840 --> 05:02:46,880 ONE'S SELF OR OWN GROUP TO 7766 05:02:46,880 --> 05:02:48,600 BETTER UNDERSTAND WHY DIFFERENT 7767 05:02:48,600 --> 05:02:51,120 PEOPLE AND GROUPS HAVE TAKEN 7768 05:02:51,120 --> 05:02:53,040 CERTAIN POSITIONS OR NEAR FIELD 7769 05:02:53,040 --> 05:02:55,120 THAT THEY WANT CERTAIN THINGS. 7770 05:02:55,120 --> 05:02:57,440 IN ORDER TO BETTER RECONCILE 7771 05:02:57,440 --> 05:02:57,640 THOSE. 7772 05:02:57,640 --> 05:03:00,920 I THINK THAT, YOU KNOW, AGAIN, 7773 05:03:00,920 --> 05:03:02,800 GOING BACK TO WHAT MONICA SAID 7774 05:03:02,800 --> 05:03:05,920 EARLIER THAT IS A WAY FOR PEOPLE 7775 05:03:05,920 --> 05:03:08,840 TO UNDERSTAND TO KNOW WHAT THEY 7776 05:03:08,840 --> 05:03:09,560 DON'T KNOW. 7777 05:03:09,560 --> 05:03:11,280 >>ALL RIGHT. ONE MORE 7778 05:03:11,280 --> 05:03:13,840 QUESTION. WE HAVE LIKE TWO 7779 05:03:13,840 --> 05:03:14,120 MINUTES. 7780 05:03:14,120 --> 05:03:17,040 >>I WILL BE AS QUICK AS I CAN, 7781 05:03:17,040 --> 05:03:19,200 SORRY ATTORNEYS ARE USUALLY NOT 7782 05:03:19,200 --> 05:03:20,000 QUICK. 7783 05:03:20,000 --> 05:03:21,840 JEN WAGNER. I WANT TO GET BACK 7784 05:03:21,840 --> 05:03:24,200 TO DATA LINKAGE AND AGGREGATION 7785 05:03:24,200 --> 05:03:27,520 AS KEY TALKING POINT OR FOCUS 7786 05:03:27,520 --> 05:03:30,640 AND ASK THIS PANEL ABOUT HOW -- 7787 05:03:30,640 --> 05:03:33,080 IF IT IS EVEN VIABLE TO HAVE A 7788 05:03:33,080 --> 05:03:35,040 SORT OF RETURN ON DATA USE SCORE 7789 05:03:35,040 --> 05:03:37,280 OR RETURN ON DATA AGGREGATION 7790 05:03:37,280 --> 05:03:39,280 SCORE WHERE, YOU KNOW, WE -- 7791 05:03:39,280 --> 05:03:42,920 MANY PEOPLE HAVE BROUGHT UP THAT 7792 05:03:42,920 --> 05:03:45,160 PUBLIC BY AND LARGE DOESN'T 7793 05:03:45,160 --> 05:03:47,000 REALLY UNDERSTAND DATA ISSUES 7794 05:03:47,000 --> 05:03:49,560 THAT IS HARD TO CONCEPTUALIZE 7795 05:03:49,560 --> 05:03:51,920 AND HARD TO EXPLAIN IT AND 7796 05:03:51,920 --> 05:03:54,840 WONDER IF ANY HAD THOUGHT ABOUT 7797 05:03:54,840 --> 05:03:56,560 THIS CONCEPT LIKE RETURN ON 7798 05:03:56,560 --> 05:03:58,000 INVESTMENT SO INDIVIDUALS AND 7799 05:03:58,000 --> 05:03:59,080 COMMUNITIES FOR THAT MATTER 7800 05:03:59,080 --> 05:04:01,480 COULD THINK ABOUT WHAT ARE 7801 05:04:01,480 --> 05:04:02,640 RESEARCHERS GETTING OUT OF THIS 7802 05:04:02,640 --> 05:04:03,000 STEP? 7803 05:04:03,000 --> 05:04:06,560 WHETHER IT IS DATA OR LINKAGE OR 7804 05:04:06,560 --> 05:04:09,080 AGGREGATION AND MAKING THOSE 7805 05:04:09,080 --> 05:04:10,680 PRIVACY TRADEOFFS THAT GO INTO 7806 05:04:10,680 --> 05:04:13,560 THAT. AS I MENTIONED EARLIER 7807 05:04:13,560 --> 05:04:14,760 PRIVACY IN MY RESEARCH 7808 05:04:14,760 --> 05:04:16,240 EXPERIENCE IS NOT AN ABSOLUTE 7809 05:04:16,240 --> 05:04:22,320 BUT IS ONE OF TRADEOFFS. 7810 05:04:22,320 --> 05:04:24,960 HAVE YOU THOUGHT ABOUT RETURN ON 7811 05:04:24,960 --> 05:04:27,440 INVESTMENT OR DATA USE FOR 7812 05:04:27,440 --> 05:04:29,240 AGGREGATIONS AND IF NOT IS THAT 7813 05:04:29,240 --> 05:04:30,360 SOMETHING WE SHOULD TRY TO 7814 05:04:30,360 --> 05:04:30,680 RESEARCH? 7815 05:04:30,680 --> 05:04:32,520 >>SO, I HAVE THOUGHT ABOUT THAT 7816 05:04:32,520 --> 05:04:34,840 IN THE FOLLOWING CONTEXT. I -- 7817 05:04:34,840 --> 05:04:36,920 I HAVE A BELIEF THAT IF I CAN'T 7818 05:04:36,920 --> 05:04:40,200 EXPLAIN IT TO MY 92-YEAR-OLD 7819 05:04:40,200 --> 05:04:41,640 GRANDMOTHER I SHOULDN'T BE 7820 05:04:41,640 --> 05:04:43,800 TALKING ABOUT IT AT ALL AND WHEN 7821 05:04:43,800 --> 05:04:47,200 I EXPLAINED THIS TO THE 7822 05:04:47,200 --> 05:04:47,720 92-YEAR-OLD GRANDMOTHER, 7823 05:04:47,720 --> 05:04:49,320 QUESTION WAS WHY ARE YOU DOING 7824 05:04:49,320 --> 05:04:49,560 THAT? 7825 05:04:49,560 --> 05:04:51,400 I HAVE TO HAVE RESPONSES READY. 7826 05:04:51,400 --> 05:04:52,760 THEY ARE NOT GOING TO BE -- 7827 05:04:52,760 --> 05:04:55,920 THERE IS NOT GOING TO BE A 7828 05:04:55,920 --> 05:04:57,600 SINGLE METRIC OR EQUATION BUT 7829 05:04:57,600 --> 05:05:00,800 WILL BE STORIES. 7830 05:05:00,800 --> 05:05:04,600 STORIES WE TELL IN INDIANA ARE 7831 05:05:04,600 --> 05:05:04,880 MULTIPLE. 7832 05:05:04,880 --> 05:05:07,880 ONE, NO HUMAN BEING FOUND CARBON 7833 05:05:07,880 --> 05:05:10,920 MONDAY OXIDE OUTBREAK AT AN 7834 05:05:10,920 --> 05:05:15,080 APARTMENT COMPLEX. BUT, BY 7835 05:05:15,080 --> 05:05:17,560 INTEGRATING THREE HOSPITALS DATA 7836 05:05:17,560 --> 05:05:21,120 CIN DROEMIC SURVEILLANCE 7837 05:05:21,120 --> 05:05:24,280 DETECTION SYSTEM FOUND THE PEEK 7838 05:05:24,280 --> 05:05:26,560 ALERTED FIELD EPIDEMIOLOGISTS 7839 05:05:26,560 --> 05:05:28,840 CONTACTED HOSPITAL LOOKED LIKE 7840 05:05:28,840 --> 05:05:30,880 NOTHING IS GOING ON LOOKED AT 7841 05:05:30,880 --> 05:05:31,960 HOME ADDRESS AND LOOKS LIKE 7842 05:05:31,960 --> 05:05:35,000 SOMETHING IS GOING ON AND 7843 05:05:35,000 --> 05:05:37,320 IDENTIFIED AND LINKED TOGETHER 7844 05:05:37,320 --> 05:05:38,920 UTILIZATION DATA IDENTIFYING 7845 05:05:38,920 --> 05:05:40,440 PEOPLE WHO USED EMERGENCY 7846 05:05:40,440 --> 05:05:43,000 DEPARTMENTS 385 TIMES IN THREE 7847 05:05:43,000 --> 05:05:43,240 YEARS. 7848 05:05:43,240 --> 05:05:44,880 PERSON HAD TWO -- NO. THEY WERE 7849 05:05:44,880 --> 05:05:46,640 GOING EVERYWHERE IN THE STATE 7850 05:05:46,640 --> 05:05:48,920 AND PERSON HAD TWO DIAGNOSES. 7851 05:05:48,920 --> 05:05:52,520 NOBODY WAS TRACKING THEM AND NO. 7852 05:05:52,520 --> 05:05:54,320 1 HAD SICKLE CELL DISEASE CRISIS 7853 05:05:54,320 --> 05:05:57,000 ALL THE TIME AND NO. 2 DIAGNOSIS 7854 05:05:57,000 --> 05:05:59,440 THAT SEALED THE DEAL WAS 7855 05:05:59,440 --> 05:06:01,160 SCHIZOPHRENIA AND I HAVE OTHER 7856 05:06:01,160 --> 05:06:03,000 STORIES LIKE THAT WHERE WITHOUT 7857 05:06:03,000 --> 05:06:05,600 INTEGRATED DATA, WE COULD NOT 7858 05:06:05,600 --> 05:06:07,880 HAVE MADE A MEANINGFUL 7859 05:06:07,880 --> 05:06:11,480 DIFFERENCE IN MANY HOOZIERS 7860 05:06:11,480 --> 05:06:12,040 LIVES. 7861 05:06:12,040 --> 05:06:13,600 INCLUDING FOR RESEARCH PURPOSES 7862 05:06:13,600 --> 05:06:16,520 AND THERE ARE ACTUALLY VERY 7863 05:06:16,520 --> 05:06:18,120 PRAGMATIC REAL-WORLD STORIES WE 7864 05:06:18,120 --> 05:06:19,520 WANT TO TELL THE PEOPLE SO THEY 7865 05:06:19,520 --> 05:06:22,720 UNDERSTAND WE ARE NOT DOING THIS 7866 05:06:22,720 --> 05:06:25,200 AND WE HAD PROPELLER HEADED 7867 05:06:25,200 --> 05:06:27,720 THINKERS WE WANT TO THINK ABOUT 7868 05:06:27,720 --> 05:06:29,920 AND PRAGMATICALLY SHARE WITH YOU 7869 05:06:29,920 --> 05:06:33,120 SO YOU CAN UNDERSTAND THE VALUE 7870 05:06:33,120 --> 05:06:33,800 OF DOING SO. 7871 05:06:33,800 --> 05:06:37,360 >>WELL, I THINK THAT PUBLIC 7872 05:06:37,360 --> 05:06:38,800 HEALTH CASE IS A MUCH EASIER TO 7873 05:06:38,800 --> 05:06:40,720 DO THAN RESEARCH CASES IN WHICH 7874 05:06:40,720 --> 05:06:44,000 YOU WILL HAVE, YOU KNOW, SEVERAL 7875 05:06:44,000 --> 05:06:46,320 ATTEMPTS TOWARDS MORE KNOWLEDGE. 7876 05:06:46,320 --> 05:06:48,040 AND WHOLE THING IS ABOUT HOW 7877 05:06:48,040 --> 05:06:50,560 COMPLETE THE DATA ARE IN 7878 05:06:50,560 --> 05:06:52,000 LONGITUDINAL; RIGHT? 7879 05:06:52,000 --> 05:06:53,640 THAT IS WHERE LINKAGES 7880 05:06:53,640 --> 05:06:55,920 ESPECIALLY IN A FRAGMENTED 7881 05:06:55,920 --> 05:06:57,360 HEALTH CARE SYSTEM, THEY MAKE 7882 05:06:57,360 --> 05:07:02,320 THE DATA, YOU KNOW, BE BETTER. 7883 05:07:02,320 --> 05:07:04,120 BUT, THE -- AGAIN, IMMEDIATE 7884 05:07:04,120 --> 05:07:07,840 VALUE FOR A COMMUNITY, I THINK 7885 05:07:07,840 --> 05:07:10,880 THAT WE CAN'T SAY. WE JUST 7886 05:07:10,880 --> 05:07:12,960 CAN'T SAY. IT WILL BE VERY FEW 7887 05:07:12,960 --> 05:07:17,200 OF TRIALS OR STUDIES THAT COME 7888 05:07:17,200 --> 05:07:19,040 INTO CURES OR PREVENTIVE 7889 05:07:19,040 --> 05:07:22,440 MEASURES OR THINGS LIKE THAT. 7890 05:07:22,440 --> 05:07:23,600 BY TIME THEY HAVE BEEN -- 7891 05:07:23,600 --> 05:07:25,080 INDIVIDUALS THAT CONTRIBUTED 7892 05:07:25,080 --> 05:07:28,160 MIGHT NOT BE THERE. 7893 05:07:28,160 --> 05:07:31,040 SO, I THINK THAT, YOU KNOW, IT 7894 05:07:31,040 --> 05:07:35,120 -- IT IS IMPORTANT THAT OUR 7895 05:07:35,120 --> 05:07:37,280 COMMUNITIES STAY TRUTHFUL ABOUT 7896 05:07:37,280 --> 05:07:40,120 THAT STATEMENT AND THE PROTOCOL; 7897 05:07:40,120 --> 05:07:40,440 RIGHT? 7898 05:07:40,440 --> 05:07:42,560 THERE MIGHT BE NO BENEFITS FOR 7899 05:07:42,560 --> 05:07:42,760 YOU. 7900 05:07:42,760 --> 05:07:47,000 AND IT THAT NEEDS TO BE SAID 7901 05:07:47,000 --> 05:07:47,600 LOUD AND CLEAR. 7902 05:07:47,600 --> 05:07:50,000 >>I WOULD LOVE TO KEEP GOING 7903 05:07:50,000 --> 05:07:53,080 ON. WE ARE OUT OF TIME. 7904 05:07:53,080 --> 05:07:54,840 >>THANK YOU, EVERYBODY. 7905 05:07:54,840 --> 05:07:56,640 >>THANK YOU. 7906 05:07:56,640 --> 05:08:01,600 >>[APPLAUSE]. 7907 05:08:01,600 --> 05:08:11,520 >>WE WILL RECONVENE AT 4 7908 05:08:11,520 --> 05:08:12,200 O'CLOCK. WE WILL BE ON BREAK 7909 05:08:12,200 --> 05:08:13,240 UNTIL 4 P.M. 7910 05:08:13,240 --> 05:08:17,240 I'M SACHIN KHETERPAL 7911 05:08:17,240 --> 05:08:26,720 UNIVERSITY OF MICHIGAN. 7912 05:08:26,720 --> 05:08:29,480 SPECIALIZING IN MEDICAL AND 7913 05:08:29,480 --> 05:08:30,400 BIOETHICS AND LEGAL FOUNDATION 7914 05:08:30,400 --> 05:08:37,600 FOR ITEMS AND TO LEFT -- FOUNDER 7915 05:08:37,600 --> 05:08:39,120 FOR ORGANIZATION THAT WAS 7916 05:08:39,120 --> 05:08:40,840 PURCHASED BY THEM AND SPENT MANY 7917 05:08:40,840 --> 05:08:43,440 YEARS IN SPECIFIC AREA DEALING 7918 05:08:43,440 --> 05:08:45,800 WITH PRIVACY POLICY AT FEDERAL 7919 05:08:45,800 --> 05:08:47,480 LEVEL AND MUCH TO TEACH US 7920 05:08:47,480 --> 05:08:49,240 THROUGHOUT THE PROCESS AND WE 7921 05:08:49,240 --> 05:08:50,960 HAD A COUPLE GREAT CONVERSATIONS 7922 05:08:50,960 --> 05:08:52,920 AND THREE PANELS THAT HAD OWN 7923 05:08:52,920 --> 05:08:57,640 FOCUS AREAS THAT YOU SAW MELDED 7924 05:08:57,640 --> 05:08:58,960 TOGETHER AND WE WILL START WITH 7925 05:08:58,960 --> 05:09:00,480 AND WOULD LIKE PANELISTS TO GIVE 7926 05:09:00,480 --> 05:09:02,160 A SENSE WHAT THEY HEARD THAT 7927 05:09:02,160 --> 05:09:04,200 WERE COMMON THEMES AND COMMON 7928 05:09:04,200 --> 05:09:07,560 CONCEPTS ACROSS ISSUES OF NEW 7929 05:09:07,560 --> 05:09:09,720 DATA TYPES AND WHAT WE THINK ARE 7930 05:09:09,720 --> 05:09:11,640 NEW AND WILL BE NEW ONES EVERY 7931 05:09:11,640 --> 05:09:15,360 DAY AND CONCEPT OF AI AND ML AND 7932 05:09:15,360 --> 05:09:17,120 ALGORITHMS AND DATA LINKAGES 7933 05:09:17,120 --> 05:09:18,880 WHAT PHRASES OR ISSUES DID YOU 7934 05:09:18,880 --> 05:09:21,240 HEAR AND POTENTIALLY WHAT STEPS 7935 05:09:21,240 --> 05:09:23,320 WE CAN TAKE ACROSS PANELS AND 7936 05:09:23,320 --> 05:09:26,320 WILL ASK YOU TO BEGIN WITH 7937 05:09:26,320 --> 05:09:28,200 COMMENTS, MYIA. 7938 05:09:28,200 --> 05:09:30,920 >>THANK SO YOU MUCH. GREAT DAY 7939 05:09:30,920 --> 05:09:31,960 AND APPRECIATE COMMENTS HERE 7940 05:09:31,960 --> 05:09:34,720 TODAY. AMAZING. THINKING OF 7941 05:09:34,720 --> 05:09:36,240 OVERARCHING THINGS COMING TO ME 7942 05:09:36,240 --> 05:09:38,080 HEARING THE DAY AND READING 7943 05:09:38,080 --> 05:09:39,600 PACKAGE BEFOREHAND AND ROLE OF 7944 05:09:39,600 --> 05:09:41,240 COMMUNITY ENGAGEMENT WE HAVE 7945 05:09:41,240 --> 05:09:43,000 HEARD ABOUT A LOT ABOUT NEED TO 7946 05:09:43,000 --> 05:09:44,880 SWITCH ORDER OF THINGS AND 7947 05:09:44,880 --> 05:09:46,680 INVESTMENT IN COMMUNITY 7948 05:09:46,680 --> 05:09:49,680 ENGAGEMENT AND NOT GOING AS WE 7949 05:09:49,680 --> 05:09:53,680 GO TODAY AS AN AFTERTHOUGHT AND 7950 05:09:53,680 --> 05:09:56,320 SMALL COMPONENT OF STUDY AFTER 7951 05:09:56,320 --> 05:09:57,520 WE PUT RESEARCH QUESTION IN 7952 05:09:57,520 --> 05:09:59,160 GRANT AND DID IT BEFORE ENGAGING 7953 05:09:59,160 --> 05:10:00,840 IN BETTER UNDERSTANDING OF NEED 7954 05:10:00,840 --> 05:10:02,920 OF COMMUNITIES AND WANT TO SAY 7955 05:10:02,920 --> 05:10:04,240 HOWEVER ALSO WE NEED TO THINK 7956 05:10:04,240 --> 05:10:06,200 ABOUT EXPANDING IDEA OF 7957 05:10:06,200 --> 05:10:09,160 COMMUNITY ENGAGEMENT BEYOND 7958 05:10:09,160 --> 05:10:11,520 TRADITIONAL JENTDER 7959 05:10:11,520 --> 05:10:12,200 RACIAL/ETHNIC COMMUNITIES THERE 7960 05:10:12,200 --> 05:10:13,800 IS CONVERSATION ABOUT RARE 7961 05:10:13,800 --> 05:10:15,640 DISEASES AND GOES FAR MORE TO 7962 05:10:15,640 --> 05:10:17,680 PEOPLE WITH DISABILITIES AND 7963 05:10:17,680 --> 05:10:18,960 SUBCOMMUNITIES WITH PEOPLE WITH 7964 05:10:18,960 --> 05:10:21,720 DISABILITIES AND MARGINALIZED 7965 05:10:21,720 --> 05:10:23,160 COMMUNITIES BOTH THOSE ARE WHO 7966 05:10:23,160 --> 05:10:25,280 ARE MEDICALLY OR SPECIAL MEDICAL 7967 05:10:25,280 --> 05:10:26,680 NEEDS THAT ARE NOT NECESSARILY 7968 05:10:26,680 --> 05:10:27,720 PEOPLE WITH DISABILITIES I WANT 7969 05:10:27,720 --> 05:10:31,360 TO PUT IT OUT THERE AND PEOPLE I 7970 05:10:31,360 --> 05:10:33,200 HAVE SEEN BEFORE OR OTHER 7971 05:10:33,200 --> 05:10:34,240 COMMUNITIES THAT ARE TOO OFTEN 7972 05:10:34,240 --> 05:10:37,200 OFF THE RADAR. WE HAVE TO THINK 7973 05:10:37,200 --> 05:10:40,680 ABOUT COMMUNITIES AND 7974 05:10:40,680 --> 05:10:41,480 INTERSECTIONALITIES THAT ARE 7975 05:10:41,480 --> 05:10:47,000 ALSO WITHIN TRADITIONAL 7976 05:10:47,000 --> 05:10:50,320 COMMUNITIES BEGINNING THAT ARE 7977 05:10:50,320 --> 05:10:52,840 GENDER AND RACIAL ETHNICITY AND 7978 05:10:52,840 --> 05:10:55,040 HOMOGENOUS AND THINKING ABOUT 7979 05:10:55,040 --> 05:10:56,080 INTERSECTIONS WITHIN THEM THEM 7980 05:10:56,080 --> 05:10:58,960 AND HOW FOR EXAMPLE INDIGENOUS 7981 05:10:58,960 --> 05:11:00,760 FOLKS WITH STABILITIES THINKING 7982 05:11:00,760 --> 05:11:02,320 ABOUT ISSUES AND AFRICAN 7983 05:11:02,320 --> 05:11:03,360 AMERICANS THAT ARE POOR MAY 7984 05:11:03,360 --> 05:11:05,000 THINK ABOUT ISSUES DIFFERENTLY 7985 05:11:05,000 --> 05:11:06,760 FROM OTHERS THAT ARE ISSUES WE 7986 05:11:06,760 --> 05:11:08,120 HAVE TO THINK ABOUT IN TERMS 7987 05:11:08,120 --> 05:11:10,880 WHICH ARE COMMUNITIES WE ARE 7988 05:11:10,880 --> 05:11:12,560 ENGAGING WITH AND SHOULD RECEIVE 7989 05:11:12,560 --> 05:11:14,680 ATTENTION AND MIGHT WANT TO 7990 05:11:14,680 --> 05:11:16,360 EXPAND TO OTHER STAKEHOLDERS IN 7991 05:11:16,360 --> 05:11:17,480 CONVERSATIONS SUCH AS WE HEARD 7992 05:11:17,480 --> 05:11:19,520 ABOUT INSTITUTIONAL REVIEW 7993 05:11:19,520 --> 05:11:21,840 BOARDS AND CLINICIANS AND OTHER 7994 05:11:21,840 --> 05:11:24,760 STUDDIS WE CONDUCTED 7995 05:11:24,760 --> 05:11:25,560 PERSPECTIVES OF STAKEHOLDERS ARE 7996 05:11:25,560 --> 05:11:26,840 SIGNIFICANTLY DIFFERENT ON 7997 05:11:26,840 --> 05:11:28,840 ISSUES OF WHAT ARE -- HOW TO 7998 05:11:28,840 --> 05:11:30,480 COLLECT DATA AND WHAT ARE 7999 05:11:30,480 --> 05:11:33,680 BENEFITS OF RESEARCH AND HOW WE 8000 05:11:33,680 --> 05:11:36,720 IMPLEMENT IT AND SO FORTH AND 8001 05:11:36,720 --> 05:11:39,600 ISSUES TO THINK ABOUT AND 8002 05:11:39,600 --> 05:11:41,320 OVERARCHING THEME PRIVACY TRANCE 8003 05:11:41,320 --> 05:11:42,960 PARENTALLY OF RELATIONSHIP 8004 05:11:42,960 --> 05:11:44,960 BENEFITS COMING ACROSS IN ALL 8005 05:11:44,960 --> 05:11:46,760 PAMS AND WE HEAR ABOUT PRIVACY 8006 05:11:46,760 --> 05:11:50,000 AND TRANSPARENCY AND BENEFITS 8007 05:11:50,000 --> 05:11:52,200 AND NEITHER IS WELL-STUDIED FROM 8008 05:11:52,200 --> 05:11:53,680 COMMUNITY PERSPECTIVE AND 8009 05:11:53,680 --> 05:11:55,880 PRIVACY IS MENTION THE BY JEN 8010 05:11:55,880 --> 05:11:58,200 WHICH IS NOT EQUALIZE THE 8011 05:11:58,200 --> 05:11:59,480 COMMODITY IN ONE WAY OR ANOTHER 8012 05:11:59,480 --> 05:12:01,680 THAT IS HOW I GRABBED IT THAT IS 8013 05:12:01,680 --> 05:12:04,200 ABILITY OF MAINTAINING PRIVACY 8014 05:12:04,200 --> 05:12:06,280 MATTER OF PRIVILEGED AND 8015 05:12:06,280 --> 05:12:07,520 MARGINALIZED COMMUNITIES DON'T 8016 05:12:07,520 --> 05:12:09,400 HAVE THIS AND EMPHASIZING 8017 05:12:09,400 --> 05:12:11,160 THINKING ABOUT DATA LINK RAGES 8018 05:12:11,160 --> 05:12:13,240 THERE ARE ISSUES AND COMMUNITIES 8019 05:12:13,240 --> 05:12:15,640 AT GREATER RISK OF PRIVACY 8020 05:12:15,640 --> 05:12:16,080 BREACHES. 8021 05:12:16,080 --> 05:12:17,360 WE HAVEN'T HEARD ENOUGH ABOUT 8022 05:12:17,360 --> 05:12:23,400 THAT AND THINK ABOUT CONSENT AND 8023 05:12:23,400 --> 05:12:25,360 ONLY OPTION IS TO PARTICIPATE 8024 05:12:25,360 --> 05:12:26,600 VERSUS NO THE TO PARTICIPATE WE 8025 05:12:26,600 --> 05:12:30,200 HAVE TO THINK ABOUT IMPLICATIONS 8026 05:12:30,200 --> 05:12:32,760 AS WELL AND THIRD IS WORTHINESS 8027 05:12:32,760 --> 05:12:34,920 KEY WORD ACROSS THE PANELS AND 8028 05:12:34,920 --> 05:12:36,120 IMPORTANT THING TO THINK ABOUT 8029 05:12:36,120 --> 05:12:38,000 HERE IS THAT WE ALL FEEL WE KNOW 8030 05:12:38,000 --> 05:12:44,120 WHAT IT MEANS AND THINK WE HAVE 8031 05:12:44,120 --> 05:12:48,240 SIGNIFICANT DIFFERENCES WHAT ARE 8032 05:12:48,240 --> 05:12:49,720 COMPONENTS OF TRUSTWORTHINESS 8033 05:12:49,720 --> 05:12:52,560 AND I WILL SAY HERE AS WELL IN 8034 05:12:52,560 --> 05:12:53,800 FOCUS GROUPS WITH PEOPLE WHO ARE 8035 05:12:53,800 --> 05:12:55,800 DEAF AND WITH DEAF AND HARD OF 8036 05:12:55,800 --> 05:12:57,480 HEARING INDIVIDUALS THAT ARE 8037 05:12:57,480 --> 05:12:58,840 BLIND AND LOW VISION INDIVIDUALS 8038 05:12:58,840 --> 05:13:00,920 AND FOLKS WITH MOBILITY AND 8039 05:13:00,920 --> 05:13:03,080 DISABILITIES AND WE FIND 8040 05:13:03,080 --> 05:13:04,400 TRUSTWORTHINESS GOES HAND IN 8041 05:13:04,400 --> 05:13:06,760 HAND WITH ACCESSIBILITY THAT WE 8042 05:13:06,760 --> 05:13:08,400 HAVE NOT HEARD MUCH TODAY AT ALL 8043 05:13:08,400 --> 05:13:11,200 AND ARE DATAS WE ARE COLLECTING 8044 05:13:11,200 --> 05:13:13,800 ACCESSIBLE AND DEVISES FROM 8045 05:13:13,800 --> 05:13:17,000 WHICH DATA ARE COLLECTED ARE 8046 05:13:17,000 --> 05:13:19,240 ACCESSIBLE THEMSELVES AND 8047 05:13:19,240 --> 05:13:20,600 PRODUCTS ACCESSIBLE AND WE 8048 05:13:20,600 --> 05:13:21,960 HAVEN'T HEARD THEM MUCH TODAY 8049 05:13:21,960 --> 05:13:24,520 AND THEY ARE KEY TO 8050 05:13:24,520 --> 05:13:26,040 TRUSTWORTHINESS AND WE HAVE TO 8051 05:13:26,040 --> 05:13:27,880 THINK ABOUT AGAIN THINKING ABOUT 8052 05:13:27,880 --> 05:13:30,800 WHO MAKES DECISION ABOUT WHAT 8053 05:13:30,800 --> 05:13:31,920 TRUSTWORTHINESS IS AND FINALLY 8054 05:13:31,920 --> 05:13:34,240 WE HEARD NEED ABOUT THINKING 8055 05:13:34,240 --> 05:13:35,800 ABOUT LARGER PICTURE COMING 8056 05:13:35,800 --> 05:13:37,040 ABOUT VARIOUS CONTEXT PRIVACY 8057 05:13:37,040 --> 05:13:45,440 AND DATA SHARING TRUSTWORTHINESS 8058 05:13:45,440 --> 05:13:49,480 AND MILDRED MENTIONED IT CLEARLY 8059 05:13:49,480 --> 05:13:52,520 DIGITAL DEVICES OF AI AND ML AND 8060 05:13:52,520 --> 05:13:54,320 SO FORTH AND RAISES QUESTIONS TO 8061 05:13:54,320 --> 05:13:58,080 THINK AHEAD HOW WE ACTUALLY MOVE 8062 05:13:58,080 --> 05:14:00,520 ABOUT IN THINKING AND RETHINKING 8063 05:14:00,520 --> 05:14:02,320 EXISTING STRUCTURES TO BE 8064 05:14:02,320 --> 05:14:03,800 CONDUCTED IN HEALTH RESEARCH AND 8065 05:14:03,800 --> 05:14:06,720 HOW WE ADDRESS PROBLEM OF 8066 05:14:06,720 --> 05:14:07,760 MISINFORMATION THAT IS JAY'S 8067 05:14:07,760 --> 05:14:09,480 COMMENT AND OF INACCURATE 8068 05:14:09,480 --> 05:14:11,240 INFORMATION TO PRODUCE 8069 05:14:11,240 --> 05:14:12,440 IRONICALLY ACCURATE RESEARCH 8070 05:14:12,440 --> 05:14:13,120 RESULTS THAT IS SOMETHING WE 8071 05:14:13,120 --> 05:14:14,840 HAVE TO THINK ABOUT AND HOW TO 8072 05:14:14,840 --> 05:14:16,760 RESOLVE THAT AND HOW WE BALANCE 8073 05:14:16,760 --> 05:14:18,280 BETWEEN PRIVACY PROTECTION AND 8074 05:14:18,280 --> 05:14:20,480 DATA SHARING AND BENEFITS AND 8075 05:14:20,480 --> 05:14:22,680 THINKING ABOUT ALL THOSE IN 8076 05:14:22,680 --> 05:14:25,000 CONTEXT OF ETHICAL RESEARCH AND 8077 05:14:25,000 --> 05:14:27,360 JUSTICE AS KRYSTAL MENTIONED WHO 8078 05:14:27,360 --> 05:14:31,280 DOES DATA SHARING BENEFITS AND 8079 05:14:31,280 --> 05:14:33,640 PARTICIPANTS CONCEPTUALIZING 8080 05:14:33,640 --> 05:14:34,440 HERE IN COMMON GOOD AND 8081 05:14:34,440 --> 05:14:35,160 SOMETHING WE HAVEN'T HEARD 8082 05:14:35,160 --> 05:14:38,360 ENOUGH ABOUT AND HAVE TO THINK 8083 05:14:38,360 --> 05:14:39,480 ABOUT WHAT COMMON GOOD IS AND 8084 05:14:39,480 --> 05:14:41,720 WHO IS BENEFITING FROM IT AND 8085 05:14:41,720 --> 05:14:45,320 HOW AND WHY WE WILL MAKE IT AN 8086 05:14:45,320 --> 05:14:46,440 EQUAL OPPORTUNITY FOR EVERYONE. 8087 05:14:46,440 --> 05:14:46,840 THANK YOU. 8088 05:14:46,840 --> 05:14:49,200 >>DO WE STILL HAVE A COMMON 8089 05:14:49,200 --> 05:14:50,680 GOOD OR HAVE DIFFERENT COMMON 8090 05:14:50,680 --> 05:14:52,960 GOODS? 8091 05:14:52,960 --> 05:14:53,840 REALLY GOOD QUESTION. 8092 05:14:53,840 --> 05:14:56,440 I AM REALLY GLAD TO BE HERE. IT 8093 05:14:56,440 --> 05:14:58,920 HAS BEEN A LONG TIME SINCE I 8094 05:14:58,920 --> 05:15:00,560 HAVE HAD THE ABILITY TO HAVE A 8095 05:15:00,560 --> 05:15:02,680 DAY WHERE I JUST GET TO HEAR 8096 05:15:02,680 --> 05:15:04,760 ABOUT ALL OF THE RESEARCH THAT 8097 05:15:04,760 --> 05:15:06,960 WAS DONE IN THE COMMUNITY 8098 05:15:06,960 --> 05:15:09,040 CONVERSATIONS THAT TOOK PLACE IN 8099 05:15:09,040 --> 05:15:11,400 ABILITY TO REACT TO THOSE. 8100 05:15:11,400 --> 05:15:14,720 IT IS -- IT IS A GREAT DAY. 8101 05:15:14,720 --> 05:15:16,840 IT IS -- EVEN THOUGH WE OF 8102 05:15:16,840 --> 05:15:18,640 COURSE RAISED A LOT OF ISSUES 8103 05:15:18,640 --> 05:15:21,440 AND THINGS THAT STILL HAVE TO BE 8104 05:15:21,440 --> 05:15:23,080 RESOLVED I STILL APPRECIATE THIS 8105 05:15:23,080 --> 05:15:24,680 OPPORTUNITY TREMENDOUSLY. I 8106 05:15:24,680 --> 05:15:26,240 THINK LOTS OF WHAT I HEARD FROM 8107 05:15:26,240 --> 05:15:29,200 THE PANELS AND COMMUNITY 8108 05:15:29,200 --> 05:15:31,040 CONVERSATIONS IF IN PARTICULAR 8109 05:15:31,040 --> 05:15:33,920 RESONATED WITH ME BECAUSE IT TO 8110 05:15:33,920 --> 05:15:36,120 SOME EXTENT IT RE-ENFORCED LOTS 8111 05:15:36,120 --> 05:15:38,760 OF SURVEY DATA THAT HAS BEEN 8112 05:15:38,760 --> 05:15:40,680 PREVIOUSLY DONE THAT SAYS THAT 8113 05:15:40,680 --> 05:15:42,120 PATIENTS OR PEOPLE PREFER TO BE 8114 05:15:42,120 --> 05:15:47,600 ASKED IF YOU USE THEIR DATA FOR 8115 05:15:47,600 --> 05:15:48,800 RESEARCH AND ASK FOR MORE AND 8116 05:15:48,800 --> 05:15:50,520 HAVE MORE TRANSPARENCY AND A BIT 8117 05:15:50,520 --> 05:15:52,440 MORE CONTROL AND WHAT I LIKED A 8118 05:15:52,440 --> 05:15:53,920 LOT ABOUT THIS APPROACH AND FACT 8119 05:15:53,920 --> 05:15:56,240 IT WAS DONE IN SORT OF MORE 8120 05:15:56,240 --> 05:15:57,960 FOCUS GROUPS IT THAT WERE ACROSS 8121 05:15:57,960 --> 05:16:00,280 THE COUNTRY IS YOU GET NUANCE 8122 05:16:00,280 --> 05:16:02,480 THAT COMES WITH ABILITY TO 8123 05:16:02,480 --> 05:16:04,080 REALLY HAVE DEEP CONVERSATIONS 8124 05:16:04,080 --> 05:16:06,720 WITH PEOPLE IN CONTEXT WHAT ARE 8125 05:16:06,720 --> 05:16:08,720 REALLY COMPELLING USE CASES. 8126 05:16:08,720 --> 05:16:10,960 YOU DON'T GET KIND OF POLAR ENDS 8127 05:16:10,960 --> 05:16:13,840 OF, YOU KNOW, I WANT CONSENT AND 8128 05:16:13,840 --> 05:16:15,000 DEIDENTIFICATION. YOU ALSO GET 8129 05:16:15,000 --> 05:16:18,600 WHAT I THINK IS A GREATER 8130 05:16:18,600 --> 05:16:21,880 NUANCED APPRECIATION FOR WHAT IS 8131 05:16:21,880 --> 05:16:25,040 EXCITING TO SEE INCREASED 8132 05:16:25,040 --> 05:16:26,920 APPRECIATION AMONG PEOPLE FOR 8133 05:16:26,920 --> 05:16:28,680 POTENTIAL OF VALUE OF DATA 8134 05:16:28,680 --> 05:16:30,000 SHARING IN ADDITION TO CONCERNS 8135 05:16:30,000 --> 05:16:31,880 ABOUT DATA SHARING. 8136 05:16:31,880 --> 05:16:36,760 FAR TOO OFTEN WHAT YOU GET IN 8137 05:16:36,760 --> 05:16:38,160 SURVEYS IS MORE ALONG LINES OF 8138 05:16:38,160 --> 05:16:40,520 CONCERNS AND POTENTIAL FOR VALUE 8139 05:16:40,520 --> 05:16:41,880 PROPOSITION TO BE THERE WHICH I 8140 05:16:41,880 --> 05:16:43,520 THINK IS APPRECIATED BY 8141 05:16:43,520 --> 05:16:45,280 INCREASING NUMBER OF PEOPLE FOR 8142 05:16:45,280 --> 05:16:46,960 WHOM HEALTH CARE SYSTEM HAS LET 8143 05:16:46,960 --> 05:16:48,680 THEM DOWN IN ONE WAY OR ANOTHER 8144 05:16:48,680 --> 05:16:51,080 AND IN A SENSE THAT LIFE COULD 8145 05:16:51,080 --> 05:16:53,800 BE BETTER AND IF SHARING MY DATA 8146 05:16:53,800 --> 05:16:56,120 MAY LEAD TO THAT, THEN I AM ALL 8147 05:16:56,120 --> 05:16:57,040 FOR IT. 8148 05:16:57,040 --> 05:16:59,040 BUT, HOW DO WE GET THERE IN 8149 05:16:59,040 --> 05:17:00,960 TERMS OF PRIVACY CONCERNS? 8150 05:17:00,960 --> 05:17:02,760 THE OTHER THING THAT I LOVED 8151 05:17:02,760 --> 05:17:04,800 ABOUT HEARING THESE RESULTS IS 8152 05:17:04,800 --> 05:17:06,880 THAT IT WASN'T JUST FOCUSED ON I 8153 05:17:06,880 --> 05:17:08,880 WANT TO CONSENT TO ALL MY DATA 8154 05:17:08,880 --> 05:17:10,520 SHARING AND I KNOW THAT WE HAVE 8155 05:17:10,520 --> 05:17:12,880 HAD LOTS OF CONVERSATIONS ABOUT 8156 05:17:12,880 --> 05:17:14,800 SUBPOPULATIONS FOR WHOM THAT IS 8157 05:17:14,800 --> 05:17:16,520 IMPORTANT AND TYPES OF RESEARCH 8158 05:17:16,520 --> 05:17:18,640 FOR WHICH THAT IS MORE IMPORTANT 8159 05:17:18,640 --> 05:17:20,680 AND WE ALSO HAVE SCADS AND SCADS 8160 05:17:20,680 --> 05:17:23,480 OF RESEARCH ON HOW LIMITING 8161 05:17:23,480 --> 05:17:25,200 CONSENT CAN BE FOR A VEHICLE FOR 8162 05:17:25,200 --> 05:17:27,040 REALLY HONORING PEOPLE'S CHOICES 8163 05:17:27,040 --> 05:17:28,880 THAT IS USUALLY DONE AT A MOMENT 8164 05:17:28,880 --> 05:17:31,640 IN TIME AND WE EVEN WITH GREATER 8165 05:17:31,640 --> 05:17:33,240 TECHNIQUES FOR GRANULAR LEVELS 8166 05:17:33,240 --> 05:17:35,280 FOR CONSENT THERE ARE 8167 05:17:35,280 --> 05:17:37,280 LIMITATIONS TO HOW THAT CAN THEN 8168 05:17:37,280 --> 05:17:39,600 BE EXERCISED FOR LONG TERM 8169 05:17:39,600 --> 05:17:41,480 RESEARCH PROJECTS SUCH AS 8170 05:17:41,480 --> 05:17:43,360 DEVELOPMENT OF RENLTRIES AND NOT 8171 05:17:43,360 --> 05:17:44,560 NECESSARILY FULLY APPRECIATING 8172 05:17:44,560 --> 05:17:46,720 AT TIME YOU ARE GETTING CONSENT 8173 05:17:46,720 --> 05:17:48,720 WHAT ALL POTENTIAL USERS AND 8174 05:17:48,720 --> 05:17:52,000 USES OF DATA MIGHT BE AND PEOPLE 8175 05:17:52,000 --> 05:17:53,960 CONSENT ONLINE SO MUCH NOW FOR 8176 05:17:53,960 --> 05:17:56,800 SO MANY THINGS AND -- AND I 8177 05:17:56,800 --> 05:17:58,640 DON'T KNOW, JENNIFER. IT IS YOU 8178 05:17:58,640 --> 05:18:01,000 AND WHAT WE WANT AND WE TAP THE 8179 05:18:01,000 --> 05:18:03,480 THING AND DON'T READ THE FINE 8180 05:18:03,480 --> 05:18:04,760 PRINT. THERE ARE RESEARCH 8181 05:18:04,760 --> 05:18:06,280 PROJECTS TRYING TO CUT AGAINST 8182 05:18:06,280 --> 05:18:08,640 THAT PLACING A LITTLE HEALTHY 8183 05:18:08,640 --> 05:18:09,720 FRICTION AND DOESN'T NECESSARILY 8184 05:18:09,720 --> 05:18:11,880 NEED THAT CONSENT THAT IS SO 8185 05:18:11,880 --> 05:18:13,960 IMPROVED WE CAN REALLY RELY ON 8186 05:18:13,960 --> 05:18:17,120 IT AS BEST MECHANISM FOR GANLING 8187 05:18:17,120 --> 05:18:20,080 WHETHER RESEARCH IS TRUSTWORTHY 8188 05:18:20,080 --> 05:18:20,960 NECESSARILY. 8189 05:18:20,960 --> 05:18:22,320 AND SIMILARLY LAST PANEL IN 8190 05:18:22,320 --> 05:18:24,280 PARTICULAR IS DEIDENTIFICATION 8191 05:18:24,280 --> 05:18:25,600 IS NOT ANON MIZIZATION. 8192 05:18:25,600 --> 05:18:27,360 IT NEVER HAS BEEN. 8193 05:18:27,360 --> 05:18:29,480 IT IS A RISK REDUCTION TOOL. 8194 05:18:29,480 --> 05:18:33,160 IT IS NOT A -- A GUARANTEE. 8195 05:18:33,160 --> 05:18:36,560 IT IS PRIVACY AND ENHANCING 8196 05:18:36,560 --> 05:18:38,560 ARGUABLY BUT IS NOT PRIVACY 8197 05:18:38,560 --> 05:18:41,240 PRESERVING NOR PRIVACY 8198 05:18:41,240 --> 05:18:41,880 GUARANTEEING. 8199 05:18:41,880 --> 05:18:43,880 YET, THOSE ARE TWO PRONGS THAT 8200 05:18:43,880 --> 05:18:46,280 WE TEND TO LOOK TO. IS THIS 8201 05:18:46,280 --> 05:18:47,280 PRIVATE? 8202 05:18:47,280 --> 05:18:49,240 WE HAVE TAKEN YOUR IDENTIFIERS 8203 05:18:49,240 --> 05:18:50,120 OUT OF IT. 8204 05:18:50,120 --> 05:18:53,520 IS IT -- OR YOU HAVE CONSENTED 8205 05:18:53,520 --> 05:18:55,320 OR A COMBINATION OF THE TWO 8206 05:18:55,320 --> 05:18:57,560 RATHER THAN LOOKING TO SO MANY 8207 05:18:57,560 --> 05:19:00,960 OTHER COMPONENTS OF WHAT MAKES 8208 05:19:00,960 --> 05:19:01,520 RESEARCH POTENTIALLY TRUST 8209 05:19:01,520 --> 05:19:05,080 WORTHY AND A LOT OF WHICH CAME 8210 05:19:05,080 --> 05:19:06,800 OUT IN SOME OF THE 8211 05:19:06,800 --> 05:19:07,160 CONVERSATIONS. 8212 05:19:07,160 --> 05:19:08,040 IS IT TRANSPARENT? 8213 05:19:08,040 --> 05:19:09,280 DO I GET TO KNOW? 8214 05:19:09,280 --> 05:19:10,960 EVEN IF I DIDN'T HAVE A CHANCE 8215 05:19:10,960 --> 05:19:13,120 TO CONSENT IS THERE A PLACE TO 8216 05:19:13,120 --> 05:19:15,240 GO TO SEE HOW MY DATA IS BEING 8217 05:19:15,240 --> 05:19:15,560 USED? 8218 05:19:15,560 --> 05:19:17,560 WHO IS DOING IT AND RECEIVING IT 8219 05:19:17,560 --> 05:19:19,080 AND FOR WHAT PURPOSE? 8220 05:19:19,080 --> 05:19:21,720 WE SORT OF -- AGAIN, WE ORIENTED 8221 05:19:21,720 --> 05:19:23,800 OUR LAWS AND STANDARDS AROUND 8222 05:19:23,800 --> 05:19:25,640 DID WE GET CONSENT? 8223 05:19:25,640 --> 05:19:28,680 DID SOMEBODY LIKE AN IRB OR 8224 05:19:28,680 --> 05:19:31,600 PRIVACY BOARD APPROPRIATELY 8225 05:19:31,600 --> 05:19:32,520 APPROVED MODIFICATION OR WAIVING 8226 05:19:32,520 --> 05:19:34,760 OF IT AND IF IT WAS DEIDENTIFIED 8227 05:19:34,760 --> 05:19:36,320 YOU FRANKLY NEVER HAD TO GO 8228 05:19:36,320 --> 05:19:38,000 THROUGH ANY OF THE STEPS TO 8229 05:19:38,000 --> 05:19:40,800 BEGIN WITH. WE HAVE CLUNG TO 8230 05:19:40,800 --> 05:19:43,280 THOSE TOOLS AS THOUGH THEY ARE 8231 05:19:43,280 --> 05:19:44,320 IN VIOLATE. 8232 05:19:44,320 --> 05:19:46,200 WHAT I THINK COMMUNITY 8233 05:19:46,200 --> 05:19:47,880 CONVERSATIONS HAVE TOLD US IS 8234 05:19:47,880 --> 05:19:50,080 NOT THAT TOOLS ARE NOT 8235 05:19:50,080 --> 05:19:51,600 WORTHWHILE BUT THEY ARE NOT 8236 05:19:51,600 --> 05:19:51,840 ENOUGH. 8237 05:19:51,840 --> 05:19:54,480 THEY MAY IN SOME CASES BE 8238 05:19:54,480 --> 05:19:56,400 OBSTACLES TO RESEARCH IN SOME 8239 05:19:56,400 --> 05:19:59,760 CONSIDERATIONS AND THAT THERE IS 8240 05:19:59,760 --> 05:20:01,600 A DIFFERENT CONSTELLATION OF 8241 05:20:01,600 --> 05:20:03,200 PROTECTIONS AND WAYS TO ENGAGE 8242 05:20:03,200 --> 05:20:05,360 AND HONOR THE INTERESTS AND 8243 05:20:05,360 --> 05:20:07,000 NEEDS OF DIFFERENT COMMUNITIES 8244 05:20:07,000 --> 05:20:10,840 THAT WE HAVE REALLY UNDERTAPPED 8245 05:20:10,840 --> 05:20:12,480 FOR THE MOST PART. 8246 05:20:12,480 --> 05:20:14,640 >>WONDERFUL. THANK YOU. 8247 05:20:14,640 --> 05:20:15,960 REFLECTING UPON THAT, ONE THING 8248 05:20:15,960 --> 05:20:18,040 I HEARD ACROSS ALL THESE PANELS 8249 05:20:18,040 --> 05:20:21,440 IS THAT THIS CAN BE COMPLICATED. 8250 05:20:21,440 --> 05:20:23,480 IT -- IT ALMOST IS LIKE NIH 8251 05:20:23,480 --> 05:20:24,880 SHOULD TAKE THAT AS FEEDBACK TO 8252 05:20:24,880 --> 05:20:26,960 IT IS OUR JOB TO HELP SIMPLIFY 8253 05:20:26,960 --> 05:20:27,240 IT. 8254 05:20:27,240 --> 05:20:30,120 IT IS THE RESEARCH COMMUNITY'S 8255 05:20:30,120 --> 05:20:32,280 JOB TO FIND WAYS TO TAKE THINGS 8256 05:20:32,280 --> 05:20:34,240 EXTREMELY COMPLICATED MAKING 8257 05:20:34,240 --> 05:20:37,200 THEM SIMPLER AND OLYMPICS AND 8258 05:20:37,200 --> 05:20:38,840 GREAT ONES THAT MAKE IT LOOK 8259 05:20:38,840 --> 05:20:40,960 EASY AND RESOURCES WE HAVE 8260 05:20:40,960 --> 05:20:43,200 AVAILABLE TO US IT BECOMES OUR 8261 05:20:43,200 --> 05:20:45,240 JOB TO TAKE ALL THESE DIFFERENT 8262 05:20:45,240 --> 05:20:46,520 NUANCES AND SIMPLIFY THEM NOT 8263 05:20:46,520 --> 05:20:49,120 JUST FOR COMMUNITIES AND WOULD 8264 05:20:49,120 --> 05:20:51,480 ARGUE THOSE WITHIN OUR COMMUNITY 8265 05:20:51,480 --> 05:20:52,960 PARTICIPANTS AND PATIENTS AND 8266 05:20:52,960 --> 05:20:55,760 OUR POTENTIAL RESEARCH 8267 05:20:55,760 --> 05:20:57,000 PARTICIPANTS. 8268 05:20:57,000 --> 05:20:57,840 BUT, RESEARCHERS ALSO DON'T -- 8269 05:20:57,840 --> 05:21:00,000 NUMBER OF COLLEAGUES I HAVE TO 8270 05:21:00,000 --> 05:21:01,680 EXPLAIN THAT ARE, YOU KNOW, 8271 05:21:01,680 --> 05:21:03,800 CLINICAL RESEARCHERS, THEY DON'T 8272 05:21:03,800 --> 05:21:05,320 KNOW DIFFERENCE BETWEEN 8273 05:21:05,320 --> 05:21:07,320 ANONYMIZED AND DEIDENTIFY AND 8274 05:21:07,320 --> 05:21:08,720 DON'T KNOW DIFFERENCE BETWEEN 8275 05:21:08,720 --> 05:21:10,560 YOU CAN'T RE-IDENTIFY AS 8276 05:21:10,560 --> 05:21:11,360 ATTESTATION I HAVE TO DELIVER 8277 05:21:11,360 --> 05:21:14,080 AND YOU TOLD ME IT WAS 8278 05:21:14,080 --> 05:21:17,120 DEIDENTIFIED AND HAVE TO ASSIGN 8279 05:21:17,120 --> 05:21:18,680 SOMETHING THAT WOULDN'T 8280 05:21:18,680 --> 05:21:20,400 RE-IDENTIFY AND COMPLEXITY IS A 8281 05:21:20,400 --> 05:21:22,120 CHARGE OR THEME I HEARD ACROSS 8282 05:21:22,120 --> 05:21:23,840 ALL THREE PANELISTS OR THAT 8283 05:21:23,840 --> 05:21:25,480 MIGHT BE A CALL TO ACTION AND 8284 05:21:25,480 --> 05:21:27,280 LOTS OF WORK MIGHT NEED TO BE 8285 05:21:27,280 --> 05:21:29,160 AROUND HOW TO SIMPLIFY THINGS TO 8286 05:21:29,160 --> 05:21:30,960 BEGIN MORE INFORMED 8287 05:21:30,960 --> 05:21:31,840 CONVERSATIONS THAW SAW AT ONE OF 8288 05:21:31,840 --> 05:21:33,520 THE COMMUNITY SESSIONS THAT WE 8289 05:21:33,520 --> 05:21:35,600 WERE TRYING TO EXPLAIN AI AND ML 8290 05:21:35,600 --> 05:21:37,400 AND GETTING A SIMPLE EXAMPLE 8291 05:21:37,400 --> 05:21:39,240 THAT IS A CLINICAL EXAMPLE THEY 8292 05:21:39,240 --> 05:21:41,480 LIVE WITH ON A DAILY BASIS AND 8293 05:21:41,480 --> 05:21:43,760 WHETHER OR NOT THEY ARE PART OF 8294 05:21:43,760 --> 05:21:45,000 HEALTH CARE REALLY DROVE 8295 05:21:45,000 --> 05:21:46,600 CONVERSATION INTO A PRODUCTIVE 8296 05:21:46,600 --> 05:21:47,960 LAND WHERE THEY COULD ACTUALLY 8297 05:21:47,960 --> 05:21:49,800 GIVE US FEEDBACK THEY COULDN'T 8298 05:21:49,800 --> 05:21:50,600 GIVE US. 8299 05:21:50,600 --> 05:21:52,800 I HEARD COMPLEXITY AND 8300 05:21:52,800 --> 05:21:54,600 POTENTIALLY THAT IS OUR CHARGE 8301 05:21:54,600 --> 05:21:56,480 FOR ACTION AND NEXT THING TO ASK 8302 05:21:56,480 --> 05:21:58,560 IS WHAT DID YOU NOT HEAR ACROSS 8303 05:21:58,560 --> 05:21:59,760 THE THREE WHEN YOU HEARD OF 8304 05:21:59,760 --> 05:22:01,720 TITLE OF PANELS AND TITLE WHY 8305 05:22:01,720 --> 05:22:04,320 YOU WOULD HANG OUT WITH US FOR A 8306 05:22:04,320 --> 05:22:06,520 DAY YOU WERE SURE YOU WOULD HEAR 8307 05:22:06,520 --> 05:22:09,360 THIS BUZZWORD OR TOPIC AND ARE 8308 05:22:09,360 --> 05:22:12,600 SHOCKED IT IS UNDEREMPHASIZED OR 8309 05:22:12,600 --> 05:22:13,880 NEARLY ABSENT WOULD BE 8310 05:22:13,880 --> 05:22:15,320 EDUCATIONAL FOR US. 8311 05:22:15,320 --> 05:22:17,440 >>THANKS. THINKING ACROSS THE 8312 05:22:17,440 --> 05:22:18,920 QUESTIONS BUT FIRST ONE WAS 8313 05:22:18,920 --> 05:22:20,760 REALLY ABOUT TOOLS THEMSELVES 8314 05:22:20,760 --> 05:22:23,400 AND DATA WE WANT TO COLLECT AND 8315 05:22:23,400 --> 05:22:25,080 SOCIAL MEDIA INFORMATION. 8316 05:22:25,080 --> 05:22:26,760 THE FACT WE HAVE TECH DIVIDE AND 8317 05:22:26,760 --> 05:22:28,600 WE HAVEN'T REALLY HEARD ABOUT 8318 05:22:28,600 --> 05:22:30,640 MUCH TODAY; RIGHT? 8319 05:22:30,640 --> 05:22:32,680 NOT EVERYONE HAS ACCESS TO 8320 05:22:32,680 --> 05:22:34,560 NONTRADITIONAL HEALTH DATA 8321 05:22:34,560 --> 05:22:37,720 INFORMATION. AGAIN, WHAT 8322 05:22:37,720 --> 05:22:40,160 IMPACTS WOULD THAT HAVE LATER ON 8323 05:22:40,160 --> 05:22:42,680 WITH BOTH ALGORITHMS AND DATA 8324 05:22:42,680 --> 05:22:43,800 LINKAGES AND EFFECTING 8325 05:22:43,800 --> 05:22:45,000 COMMUNITIES IS SOMETHING TO 8326 05:22:45,000 --> 05:22:48,040 THINK ABOUT AND EXISTING DIGITAL 8327 05:22:48,040 --> 05:22:50,760 DEVICES WE ARE THINKING ABOUT TO 8328 05:22:50,760 --> 05:22:52,840 COLLECT HEALTH DATA ARE NOT 8329 05:22:52,840 --> 05:22:54,880 EQUAL AND NOT ALL OF THEM ARE 8330 05:22:54,880 --> 05:22:56,560 ACCESSIBLE OR ALLOW FOR EVERYONE 8331 05:22:56,560 --> 05:22:59,200 TO TAKE PART IN. AGAIN, IF I 8332 05:22:59,200 --> 05:23:01,720 THINK ABOUT DISABILITY COMMUNITY 8333 05:23:01,720 --> 05:23:03,920 AND PEOPLE WITH DIVERSE 8334 05:23:03,920 --> 05:23:06,840 ABILITIES WE KNOW NOT ALL SOCIAL 8335 05:23:06,840 --> 05:23:08,840 MEDIA PLATFORMS ARE DISABILITY 8336 05:23:08,840 --> 05:23:10,960 ACCESSIBLE AND IF WE WANT TO USE 8337 05:23:10,960 --> 05:23:13,280 PLATFORMS FOR MAKING 8338 05:23:13,280 --> 05:23:13,960 GENERALIZABLE FINDINGS THAT IS 8339 05:23:13,960 --> 05:23:15,080 SOMETHING TO KEEP IN MIND. 8340 05:23:15,080 --> 05:23:18,080 I WONDER HOW WE ENSURE THAT 8341 05:23:18,080 --> 05:23:20,200 PLATFORMS OF SOCIAL MEDIA AND 8342 05:23:20,200 --> 05:23:21,720 NONTRADITIONAL HEALTH PLATFORMS 8343 05:23:21,720 --> 05:23:23,160 ARE SAFE FOR THE PUBLIC. 8344 05:23:23,160 --> 05:23:25,720 WE THINK ABOUT MENTAL HEALTH AND 8345 05:23:25,720 --> 05:23:28,000 DISCUSS SOME TEENANLER SCENARIOS 8346 05:23:28,000 --> 05:23:30,960 HERE AND OF COURSE THOSE PUBLIC 8347 05:23:30,960 --> 05:23:33,120 SPHERES ARE NOT ONLY FREE FROM 8348 05:23:33,120 --> 05:23:34,200 MISINFORMATION OR INACCURATE 8349 05:23:34,200 --> 05:23:36,160 INFORMATION BUT HAVE TO BE FREE 8350 05:23:36,160 --> 05:23:37,720 FROM BULLYING AND OFFENSIVE 8351 05:23:37,720 --> 05:23:40,880 LANGUAGE THAT IS HUMILIATING AND 8352 05:23:40,880 --> 05:23:43,600 OFFENSIVE AND RE-ENFORCING 8353 05:23:43,600 --> 05:23:46,160 STIGMA AND DISCRIMINATION AND 8354 05:23:46,160 --> 05:23:48,480 INCREASE MENTAL BURDEN FOR THOSE 8355 05:23:48,480 --> 05:23:49,960 USING SERVICES TO BEGIN WITH. I 8356 05:23:49,960 --> 05:23:53,400 HAVEN'T HEARD A LOT ABOUT THE 8357 05:23:53,400 --> 05:23:54,320 INCREASED RISK FOR CERTAIN 8358 05:23:54,320 --> 05:23:57,200 ALREADY MARGINALIZED POPULATIONS 8359 05:23:57,200 --> 05:23:58,720 DUE TO DATA LINKAGES. 8360 05:23:58,720 --> 05:24:01,280 I THINK THERE WAS HENCE ABOUT IT 8361 05:24:01,280 --> 05:24:04,000 IN SHAWN'S CONVERSATION ABOUT 8362 05:24:04,000 --> 05:24:07,080 MISMATCHING AND RACIALLIZED 8363 05:24:07,080 --> 05:24:08,760 RACIAL/ETHNIC AND ALSO MENTIONED 8364 05:24:08,760 --> 05:24:09,680 GENDER COMMUNITIES AND THINKING 8365 05:24:09,680 --> 05:24:12,000 IN BROADER SENSE IF WE HAVE 8366 05:24:12,000 --> 05:24:13,720 LARGE COHORTS WITH SMALL SAMPLES 8367 05:24:13,720 --> 05:24:17,320 THAT ARE UNIQUE, THOSE UNIQUE 8368 05:24:17,320 --> 05:24:19,600 INDIVIDUALS WILL BE MORE 8369 05:24:19,600 --> 05:24:21,000 DEIDENTIFIED AND WILL BE EASIER 8370 05:24:21,000 --> 05:24:23,560 TO IDENTIFY LATER ON AND WILL 8371 05:24:23,560 --> 05:24:26,720 HAVE PRIVACY BREACHES AND DATA 8372 05:24:26,720 --> 05:24:28,320 LINKAGES TO ADD HOAR LIKELY THEY 8373 05:24:28,320 --> 05:24:31,040 WILL BE IN LINKAGES AND THINKING 8374 05:24:31,040 --> 05:24:33,960 ABOUT TRADITIONAL HEALTH CARE 8375 05:24:33,960 --> 05:24:37,280 DATA ALONGSIDE GENOMIC DATA AND 8376 05:24:37,280 --> 05:24:38,200 ALONGSIDE GOVERNMENTAL BENEFITS 8377 05:24:38,200 --> 05:24:40,800 WHO'S IS ON UNEMPLOYMENT LIST 8378 05:24:40,800 --> 05:24:43,560 AND WHO HAS FOOD STAMP OPTIONS 8379 05:24:43,560 --> 05:24:44,960 AND INFORMATION IMPORTANT FOR 8380 05:24:44,960 --> 05:24:46,240 THINKING ABOUT SOCIAL 8381 05:24:46,240 --> 05:24:47,840 DETERMINANTS OF HEALTH HAS 8382 05:24:47,840 --> 05:24:49,680 IMPACTS FOR INCREASE THE RISK OF 8383 05:24:49,680 --> 05:24:51,000 CERTAIN POPULATIONS AND LOOKED 8384 05:24:51,000 --> 05:24:53,680 AT IT AS VERY GENERALIZABLE AS 8385 05:24:53,680 --> 05:24:56,760 ONE HOMOGENEOUS COMMUNITIES AND 8386 05:24:56,760 --> 05:24:58,520 FINALLY MORE ABOUT GROUP HARMS 8387 05:24:58,520 --> 05:25:00,520 WE HEARD ABOUT IN CONTEXT OF AI 8388 05:25:00,520 --> 05:25:07,160 AND IN TRIBAL COMMUNITIES HOW DO 8389 05:25:07,160 --> 05:25:09,680 WE BALANCE BETWEEN EF ORTS 8390 05:25:09,680 --> 05:25:10,400 CREATING GENERALIZABLE 8391 05:25:10,400 --> 05:25:13,280 APPROACHES TO DATA ANALYSIS AND 8392 05:25:13,280 --> 05:25:14,720 TECHNOLOGIES AND HOW WE ALSO 8393 05:25:14,720 --> 05:25:17,360 TAILOR THEM TO SPECIFIC 8394 05:25:17,360 --> 05:25:18,640 POPULATIONS THAT HAVE BEEN 8395 05:25:18,640 --> 05:25:20,440 SCARRED AND ABUSED AND 8396 05:25:20,440 --> 05:25:21,280 MISTREATED AND THINKING ABOUT 8397 05:25:21,280 --> 05:25:24,840 FIRST COMMENT AND HAS TO GO 8398 05:25:24,840 --> 05:25:26,280 BEYOND TRADITIONAL MARGINALIZED 8399 05:25:26,280 --> 05:25:29,280 COMMUNITIES THAT IS SOMETHING WE 8400 05:25:29,280 --> 05:25:31,680 HAVE TO REALLY THINK ABOUT 8401 05:25:31,680 --> 05:25:33,720 WORKFORCE DIVERSITY DIDN'T COME 8402 05:25:33,720 --> 05:25:35,800 UP MUCH BUT THOUGHT IT WOULD IN 8403 05:25:35,800 --> 05:25:37,960 ASPECTS OF PROCESS FROM DATA 8404 05:25:37,960 --> 05:25:39,160 COLLECTION TO DECIDING WHICH 8405 05:25:39,160 --> 05:25:40,720 QUESTIONS TO MOVING FORWARD WITH 8406 05:25:40,720 --> 05:25:45,000 AI AND ANALYSIS AND ALL THESE 8407 05:25:45,000 --> 05:25:47,280 ISSUES EVEN IF BIASES COULD BE 8408 05:25:47,280 --> 05:25:49,280 ADDRESSED PARICALLY HAVING 8409 05:25:49,280 --> 05:25:50,680 DIVERSE WORKFORCE PEOPLE COULD 8410 05:25:50,680 --> 05:25:52,320 BE AWARE OF CHALLENGES AND 8411 05:25:52,320 --> 05:25:54,080 ISSUES AND RAISE AWARENESS. I 8412 05:25:54,080 --> 05:25:56,560 WILL STOP HERE. WE WILL 8413 05:25:56,560 --> 05:25:56,880 CONTINUE. 8414 05:25:56,880 --> 05:25:58,920 >>THANKS. FOR ME, IT WASN'T SO 8415 05:25:58,920 --> 05:26:01,160 MUCH WHAT I DIDN'T HEAR FROM 8416 05:26:01,160 --> 05:26:03,120 CONVERSATIONS FROM PANELISTS 8417 05:26:03,120 --> 05:26:03,640 TODAY. 8418 05:26:03,640 --> 05:26:05,720 BECAUSE, YOU KNOW, THERE WAS 8419 05:26:05,720 --> 05:26:07,760 SUCH RICH CONVERSATION THAT WENT 8420 05:26:07,760 --> 05:26:13,280 ON WITH EACH OF THE PANELS THAT 8421 05:26:13,280 --> 05:26:16,840 ADDED TO WHAT WAS PRESENTED WITH 8422 05:26:16,840 --> 05:26:17,840 COMMUNITY CONVERSATIONS AND HARD 8423 05:26:17,840 --> 05:26:19,720 TO NOTICE SOMETHING LEFT OUT AND 8424 05:26:19,720 --> 05:26:22,800 MOST OF WHAT GOT RAISED ABOUT I 8425 05:26:22,800 --> 05:26:24,560 ONE PANELIST ONE TIME THAT WAS 8426 05:26:24,560 --> 05:26:25,440 SURPRISED TO NOT NECESSARILY 8427 05:26:25,440 --> 05:26:33,160 HAVE HEARD COMING FROM COMMUNITY 8428 05:26:33,160 --> 05:26:34,760 NOT AT LEVEL MENTIONED IN 8429 05:26:34,760 --> 05:26:36,720 SUMMARY COMMENTS AND WANT TO 8430 05:26:36,720 --> 05:26:38,120 UNDERSTAND WHAT PARTICIPANTS SAY 8431 05:26:38,120 --> 05:26:42,440 WHEN THEY SAY THEY WANT PRIVACY 8432 05:26:42,440 --> 05:26:42,720 PROTECTED. 8433 05:26:42,720 --> 05:26:45,160 WHAT DOES IT MEAN TO YOU? I CAN 8434 05:26:45,160 --> 05:26:47,280 TELL YOU MOST OF TIME WHEN 8435 05:26:47,280 --> 05:26:49,280 SOMEONE SAYS FROM DATA SCIENCE 8436 05:26:49,280 --> 05:26:52,000 COMMUNITY, WHAT THEY THINK THAT 8437 05:26:52,000 --> 05:26:54,000 MEANS IS HOW MUCH OF 8438 05:26:54,000 --> 05:26:56,200 DEIDENTIFIED THIS DATA AND HOW 8439 05:26:56,200 --> 05:26:59,000 MUCH HAVE I TAKEN INSUFFICIENT 8440 05:26:59,000 --> 05:27:00,440 IDENTIFYING QUALITIES OUT OF IT 8441 05:27:00,440 --> 05:27:02,480 TO USE IT WITHOUT VIOLATING YOUR 8442 05:27:02,480 --> 05:27:03,040 PRIVACY? 8443 05:27:03,040 --> 05:27:05,480 NOBODY REALLY KNOWS IT IS YOU 8444 05:27:05,480 --> 05:27:07,200 BUT A 58 YEAR OLD WOMAN USE THE 8445 05:27:07,200 --> 05:27:09,440 TO LIVE IN WASHINGTON, DC THEN 8446 05:27:09,440 --> 05:27:11,200 IN CALIFORNIA AND MOVED BACK TO 8447 05:27:11,200 --> 05:27:14,320 NOT QUITE WASHINGTON, DC LIKE 8448 05:27:14,320 --> 05:27:15,600 ALL THAT STUFF BUT THEY DON'T 8449 05:27:15,600 --> 05:27:18,120 KNOW THAT IS DEVEN MCGRAW AND 8450 05:27:18,120 --> 05:27:20,760 HOW I EXPLAIN HOW PRIVACY 8451 05:27:20,760 --> 05:27:21,640 PRESERVING LINKAGES WORK THEY 8452 05:27:21,640 --> 05:27:25,440 KNOW ALL THIS DATA ABOUT YOU BUT 8453 05:27:25,440 --> 05:27:29,200 DON'T KNOW IT IS YOU. 8454 05:27:29,200 --> 05:27:31,280 AT ANY RATE IT IS IMPORTANT TO 8455 05:27:31,280 --> 05:27:32,600 PROBE THAT A LITTLE MORE WHEN 8456 05:27:32,600 --> 05:27:34,240 YOU SAY YOU WANT PRIVACY 8457 05:27:34,240 --> 05:27:35,240 PROTECTED WHAT DOES IT MEAN YOU 8458 05:27:35,240 --> 05:27:37,080 TO IN POLICY CONTEXT FOR A LONG 8459 05:27:37,080 --> 05:27:39,560 TIME WE HAVE TRANSLATED THAT 8460 05:27:39,560 --> 05:27:41,440 INTO THAT MUST MEAN X AND NOT 8461 05:27:41,440 --> 05:27:42,680 SURE IT IS QUITE ACCURATE AND 8462 05:27:42,680 --> 05:27:45,480 COULD BE IT WAS A ROL UP OF 8463 05:27:45,480 --> 05:27:47,160 SURVEY DATA WE DIDN'T GET NUANCE 8464 05:27:47,160 --> 05:27:48,960 FOR PURPOSES OF THIS 8465 05:27:48,960 --> 05:27:50,160 CONVERSATION AND IS ALWAYS WHAT 8466 05:27:50,160 --> 05:27:52,200 I WANT TO UNDERSTAND. 8467 05:27:52,200 --> 05:27:54,440 AS JAY POINTED OUT, IT IS 8468 05:27:54,440 --> 05:27:56,160 DIFFERENT FOR PATIENTS THAT ARE 8469 05:27:56,160 --> 05:27:59,440 SICK AS WELL TO PATIENTS WHO 8470 05:27:59,440 --> 05:27:59,920 DON'T. 8471 05:27:59,920 --> 05:28:02,000 I PUSH BACK HARD ON NOTION THAT 8472 05:28:02,000 --> 05:28:04,880 PEOPLE THAT ARE SICK DON'T CARE 8473 05:28:04,880 --> 05:28:06,840 ABOUT THEIR PRIVACY. THEY DO 8474 05:28:06,840 --> 05:28:08,720 BUT THEY CARE DIFFERENTLY AND 8475 05:28:08,720 --> 05:28:11,000 HAVE A GREATER WEIGHT ON DATA 8476 05:28:11,000 --> 05:28:12,320 SHARING AND WANT TO ABSOLUTELY 8477 05:28:12,320 --> 05:28:14,520 KNOW WHO IS GETTING MY DATA FOR 8478 05:28:14,520 --> 05:28:15,840 WHAT PURPOSES HOW WILL THEY USE 8479 05:28:15,840 --> 05:28:18,120 IT AND WILL IT GO TO SOMEONE'S 8480 05:28:18,120 --> 05:28:20,120 BENEFIT EVEN IF IT WON'T BENEFIT 8481 05:28:20,120 --> 05:28:22,120 ME. TEAMS ALSO, PEOPLE THINK 8482 05:28:22,120 --> 05:28:23,480 THEY DON'T CARE ABOUT THEIR 8483 05:28:23,480 --> 05:28:25,160 PRIVACY. OH, THEY DO. THEY 8484 05:28:25,160 --> 05:28:26,240 JUST CARE ABOUT IT IN DIFFERENT 8485 05:28:26,240 --> 05:28:28,120 WAYS IN TERMS WHO THEY WANT TO 8486 05:28:28,120 --> 05:28:29,480 SHARE WITH AND WHO THEY DON'T 8487 05:28:29,480 --> 05:28:31,360 WANT TO SHARE WITH. 8488 05:28:31,360 --> 05:28:32,880 THE NOTION THAT PEOPLE WANT TO 8489 05:28:32,880 --> 05:28:35,480 KNOW THAT THE DATA IS GOING TO 8490 05:28:35,480 --> 05:28:37,280 GO TO SOME BENEFIT IS ANOTHER 8491 05:28:37,280 --> 05:28:39,320 ONE WHERE I WAS LEFT 8492 05:28:39,320 --> 05:28:39,680 QUESTIONING. 8493 05:28:39,680 --> 05:28:42,640 WHAT IS IT? WHAT KIND OF 8494 05:28:42,640 --> 05:28:43,200 BENEFIT? WHAT ARE PEOPLE 8495 05:28:43,200 --> 05:28:45,480 IDEALLY LOOKING FOR AND CONCEPT 8496 05:28:45,480 --> 05:28:47,280 OF RESEARCH IS IT MIGHT NOT 8497 05:28:47,280 --> 05:28:49,560 BENEFIT YOU PERSONALLY AT ALL OR 8498 05:28:49,560 --> 05:28:51,120 YOUR FAMILY MEMBERS. 8499 05:28:51,120 --> 05:28:53,280 IT IS BUILT ON A CONSTRUCT OF 8500 05:28:53,280 --> 05:28:55,640 ALTRUISM THAT YOU WANT TO HELP 8501 05:28:55,640 --> 05:28:58,520 PEOPLE LIKE YOU AND YOU WANT TO 8502 05:28:58,520 --> 05:29:00,680 HELP SUCCESSOR GENERATIONS IT 8503 05:29:00,680 --> 05:29:01,920 MIGHT NOT GENERATE A RESULT THAT 8504 05:29:01,920 --> 05:29:03,840 WILL ACTUALLY HELP YOU IN YOUR 8505 05:29:03,840 --> 05:29:05,520 LIFETIME DEPENDING ON 8506 05:29:05,520 --> 05:29:07,000 CIRCUMSTANCES AND WHAT DOES IT 8507 05:29:07,000 --> 05:29:09,000 MEAN WHEN PEOPLE SAY BENEFIT? 8508 05:29:09,000 --> 05:29:11,080 WE CAN THINK OF OBVIOUS THINGS 8509 05:29:11,080 --> 05:29:13,200 AROUND I CONTRIBUTE TODAY 8510 05:29:13,200 --> 05:29:14,840 RESEARCH ON THIS DRUG. YET, IT 8511 05:29:14,840 --> 05:29:16,400 IS SO EXPENSIVE I CAN'T GET IT. 8512 05:29:16,400 --> 05:29:19,160 IT IS A PRETTY OBVIOUS CASE. I 8513 05:29:19,160 --> 05:29:20,520 THINK PROBING A LITTLE MORE ON 8514 05:29:20,520 --> 05:29:22,320 WHAT EXPECTATIONS ARE FOR PEOPLE 8515 05:29:22,320 --> 05:29:23,840 AROUND REALIZATION OF BENEFIT 8516 05:29:23,840 --> 05:29:25,880 AND I THINK IT WOULD ALSO BE 8517 05:29:25,880 --> 05:29:27,800 HELPFUL AND CONCERNS THAT JAY 8518 05:29:27,800 --> 05:29:29,320 RAISE THE AROUND INTELLECTUAL 8519 05:29:29,320 --> 05:29:31,280 PROPERTY AND NOTION THAT WHETHER 8520 05:29:31,280 --> 05:29:33,480 YOU TECHNICALLY BY LAW OWN DATA 8521 05:29:33,480 --> 05:29:35,280 OR NOT WHEN YOU POSSESS IT YOU 8522 05:29:35,280 --> 05:29:37,120 HAVE DOMINION OVER IT AND GET TO 8523 05:29:37,120 --> 05:29:40,240 SAY HOW IT IS ACCESS USE THE AND 8524 05:29:40,240 --> 05:29:41,400 DISCLOSED SUBJECT TO WHATEVER 8525 05:29:41,400 --> 05:29:43,240 OTHER LEGAL CONSTRAINTS MIGHT BE 8526 05:29:43,240 --> 05:29:45,480 AROUND IS SOMETHING THAT WE DO 8527 05:29:45,480 --> 05:29:48,280 INCREASINGLY HEAR ABOUT FROM 8528 05:29:48,280 --> 05:29:48,560 PATIENTS. 8529 05:29:48,560 --> 05:29:52,840 THEY SEE DETRIMENTS OF NONDATA 8530 05:29:52,840 --> 05:29:54,480 SHARING AND THEY SEE WHAT 8531 05:29:54,480 --> 05:29:56,080 HAPPENS WHEN RESEARCH FOR -- ON 8532 05:29:56,080 --> 05:29:57,720 A DISEASE THAT IS VERY IMPORTANT 8533 05:29:57,720 --> 05:29:59,640 TO THEM IS SUPER SLOW. 8534 05:29:59,640 --> 05:30:02,000 BECAUSE THE DATA IS PROPRIETARY. 8535 05:30:02,000 --> 05:30:03,920 IT IS HARD FOR OTHERS TO GET AT 8536 05:30:03,920 --> 05:30:06,560 IT. I THINK THAT, THAT CONCERN 8537 05:30:06,560 --> 05:30:09,040 MAYBE DIDN'T GET AS MUCH FOCUS 8538 05:30:09,040 --> 05:30:13,520 BECAUSE OBVIOUSLY IF WE GO TOO 8539 05:30:13,520 --> 05:30:15,000 FAR ON OTHER SIDE AROUND MAKING 8540 05:30:15,000 --> 05:30:17,360 SURE COMMUNITY TRUSTS RESEARCH 8541 05:30:17,360 --> 05:30:18,720 WITHOUT ALSO UNDERSTANDING 8542 05:30:18,720 --> 05:30:20,080 COMMUNITY'S NEEDS FOR RESEARCH 8543 05:30:20,080 --> 05:30:22,360 TO BE DONE AND DONE QUICKLY WE 8544 05:30:22,360 --> 05:30:23,520 HAVEN'T SOLVED FOR THE WHOLE OF 8545 05:30:23,520 --> 05:30:27,160 THAT EQUATION AND TRUST IN 8546 05:30:27,160 --> 05:30:29,480 GOVERNMENT AND SCIENCE ERODING 8547 05:30:29,480 --> 05:30:35,360 WHICH WE SAW IN A BIG WAY DURING 8548 05:30:35,360 --> 05:30:36,200 COVID-19 PANDEMIC EMERGENCY 8549 05:30:36,200 --> 05:30:37,760 MAYBE OVER BUT AGREE WE STILL 8550 05:30:37,760 --> 05:30:39,560 HAVE A PANDEMIC. 8551 05:30:39,560 --> 05:30:42,840 IT IS SOMETHING THAT IS A HUGE 8552 05:30:42,840 --> 05:30:43,280 PROBLEM. 8553 05:30:43,280 --> 05:30:49,800 THAT I'M NOT SURE QUITE HOW TO 8554 05:30:49,800 --> 05:30:52,360 RESOLVE THAT BUBBLED UP IN 8555 05:30:52,360 --> 05:30:55,280 CONVERSATION AND TRIFTA IS 8556 05:30:55,280 --> 05:30:57,080 PROBABLY YOU TRUSTING IN 8557 05:30:57,080 --> 05:30:58,360 GOVERNMENT SITUATIONS 8558 05:30:58,360 --> 05:30:59,760 HISTORICALLY IS LOW AND WE 8559 05:30:59,760 --> 05:31:01,600 EXPANDED BASE OF PEOPLE WHO 8560 05:31:01,600 --> 05:31:03,160 DON'T THINK OR DON'T TRUST 8561 05:31:03,160 --> 05:31:04,240 SCIENCE OR TRUST THE GOVERNMENT. 8562 05:31:04,240 --> 05:31:06,800 WE ARE TRYING TO WORK WITH NIH 8563 05:31:06,800 --> 05:31:10,000 TO DEVELOP TECHNIQUES TO GAIN 8564 05:31:10,000 --> 05:31:11,720 MOR COMMUNITY TRUST AND HOW CAN 8565 05:31:11,720 --> 05:31:14,040 WE DO THAT AND LEVERAGE MORE OF 8566 05:31:14,040 --> 05:31:15,520 COMMUNITY INSTITUTIONS AND 8567 05:31:15,520 --> 05:31:18,600 ORGANIZATIONS THAT PEOPLE DO 8568 05:31:18,600 --> 05:31:20,880 TRUST IN TRUE PARTNERSHIP TO 8569 05:31:20,880 --> 05:31:23,040 MAKE THIS WORK A BIT BETTER? 8570 05:31:23,040 --> 05:31:23,640 THANK YOU. 8571 05:31:23,640 --> 05:31:27,080 >>WONDERFUL. THANK YOU FOR 8572 05:31:27,080 --> 05:31:28,320 THOSE EXAMPLES. 8573 05:31:28,320 --> 05:31:30,640 ONE THING I WAS SURPRISE THE I 8574 05:31:30,640 --> 05:31:32,760 DIDN'T HEAR IS THAT WE 8575 05:31:32,760 --> 05:31:34,400 POTENTIALLY HAVE MACRO FORCE 8576 05:31:34,400 --> 05:31:36,120 KROOEZATING A TENSION HERE NOW. 8577 05:31:36,120 --> 05:31:38,400 ON ONE SIDE WE MOVE MORE AND 8578 05:31:38,400 --> 05:31:40,080 MORE TOWARDS OPEN SCIENCE AND 8579 05:31:40,080 --> 05:31:42,480 ACCESS TO DATA AND NIH POLICIES 8580 05:31:42,480 --> 05:31:44,360 HAVING A DATA SHARING PLAN AND 8581 05:31:44,360 --> 05:31:45,560 WHETHER OR NOT IT INCLUDES 8582 05:31:45,560 --> 05:31:48,360 SHARING DATA IS A SEPARATE ISSUE 8583 05:31:48,360 --> 05:31:50,680 AND IN GENERAL ACADEMIC WORLD IS 8584 05:31:50,680 --> 05:31:53,560 IN ATIESY TO BE BLUNT ABOUT NOT 8585 05:31:53,560 --> 05:31:55,720 HAVING CONTROL OVER DATA AND ARE 8586 05:31:55,720 --> 05:31:57,160 EXPERIENCING WHAT CONSUMERS ARE 8587 05:31:57,160 --> 05:31:59,080 AND AS PART OF THAT THEY ARE NOT 8588 05:31:59,080 --> 05:32:01,640 USING CONSUMER PRIVACY AND 8589 05:32:01,640 --> 05:32:03,200 PATIENT PARTICIPANT PRIVACY AS 8590 05:32:03,200 --> 05:32:04,920 REASON TO FIGHT AGAINST THAT. I 8591 05:32:04,920 --> 05:32:06,040 WAS SURPRISED WE DIDN'T HEAR 8592 05:32:06,040 --> 05:32:08,800 ABOUT HOW TO RESOLVE TWO 8593 05:32:08,800 --> 05:32:09,560 MOVEMENTS AT [INDISCERNIBLE] 8594 05:32:09,560 --> 05:32:11,880 LEVEL THAT IS, ONE, CREATING 8595 05:32:11,880 --> 05:32:12,920 MORE AGENCY AND PRIVACY FOR 8596 05:32:12,920 --> 05:32:14,840 PEOPLE THAT ARE CREATING DATA 8597 05:32:14,840 --> 05:32:16,680 AND AT SAME TIME LIVING IN A 8598 05:32:16,680 --> 05:32:18,360 WORLD WHERE SAYING SCIENCE 8599 05:32:18,360 --> 05:32:19,920 DEMANDS OPEN DATA TO GET MORE 8600 05:32:19,920 --> 05:32:22,360 VALUE OUT OF THE RISK THAT THOSE 8601 05:32:22,360 --> 05:32:24,000 PARTICIPANTS HAVE ALREADY TAKEN 8602 05:32:24,000 --> 05:32:25,760 THAT IS THE PREMISES THAT IS IN 8603 05:32:25,760 --> 05:32:27,640 ORDER TO GENERATE ANY BENEFIT 8604 05:32:27,640 --> 05:32:29,640 FOR KNOWN FIXED RISK THAT THEY 8605 05:32:29,640 --> 05:32:31,560 TOOK, WE SHOULD SHARE DATA MORE 8606 05:32:31,560 --> 05:32:32,440 OPENLY. 8607 05:32:32,440 --> 05:32:33,600 YET, I DIDN'T HEAR THAT TODAY 8608 05:32:33,600 --> 05:32:34,880 THAT IS SOMETHING WE HAVE TO 8609 05:32:34,880 --> 05:32:38,280 FIGURE OUT AS A COMMUNITY AND 8610 05:32:38,280 --> 05:32:41,320 ARE THOSE -- IS IT A BALANCING 8611 05:32:41,320 --> 05:32:42,760 ACT OPPOSED TO TENSIONS THAT WE 8612 05:32:42,760 --> 05:32:45,120 MAKE SEEM IS MORE THAN ONE OR 8613 05:32:45,120 --> 05:32:47,040 OTHER AND IS A BALANCING ACT AND 8614 05:32:47,040 --> 05:32:48,960 SURPRISED I DIDN'T HEAR ABOUT IT 8615 05:32:48,960 --> 05:32:52,160 TODAY ORDERING CONVERSATIONS 8616 05:32:52,160 --> 05:32:53,880 WITH COMMUNITY PARTICIPANTS. WE 8617 05:32:53,880 --> 05:32:56,360 WILL MOVE TO QUESTION THAT IS 8618 05:32:56,360 --> 05:32:57,840 STRETCHING ACROSS THE THREE AND 8619 05:32:57,840 --> 05:32:59,600 HARKINS TO TOPIC I HEARD IN A 8620 05:32:59,600 --> 05:33:01,560 PANEL THAT IS OPPORTUNITY FOR 8621 05:33:01,560 --> 05:33:02,480 NIH TO LEAD HERE. 8622 05:33:02,480 --> 05:33:04,400 THERE IS A FAIR AMOUNT OF 8623 05:33:04,400 --> 05:33:06,240 RESOURCES AND FAIR AMOUNT OF 8624 05:33:06,240 --> 05:33:08,080 POLICY GUIDANCE AND TO BE HONEST 8625 05:33:08,080 --> 05:33:09,600 IS THE CRUX OF OUR END CHARGES 8626 05:33:09,600 --> 05:33:12,280 TO BE ABLE TO SAY WHAT SHOULD 8627 05:33:12,280 --> 05:33:14,320 NIH BE DOING TO LEAD BY EXAMPLE 8628 05:33:14,320 --> 05:33:16,840 WHICH OF DATA SETS AND WHICH OF 8629 05:33:16,840 --> 05:33:18,600 THE PARTICIPANT COMMUNITIES AND 8630 05:33:18,600 --> 05:33:21,520 WHICH OF THEIR LEVERS SHOULD BE 8631 05:33:21,520 --> 05:33:21,920 UTILIZED? 8632 05:33:21,920 --> 05:33:24,320 WHAT DID YOU HEAR ACROSS PANELS 8633 05:33:24,320 --> 05:33:27,280 OR REFLECTING ON PANELS WHAT 8634 05:33:27,280 --> 05:33:28,200 IDEAS YOU HAVE GIVEN EXPERTISE 8635 05:33:28,200 --> 05:33:31,480 HOW NIH COULD LEAD BY EXAMPLE IN 8636 05:33:31,480 --> 05:33:32,000 AREAS? 8637 05:33:32,000 --> 05:33:33,640 >>THANK YOU. YES. GREAT 8638 05:33:33,640 --> 05:33:34,920 SUGGESTION. YOU KNOW, THINKING 8639 05:33:34,920 --> 05:33:37,120 ABOUT HOW WE CAN ACTUALLY MAKE 8640 05:33:37,120 --> 05:33:38,680 CHANGES AND, AGAIN, THINKING 8641 05:33:38,680 --> 05:33:40,400 ABOUT STRUCTURAL ISSUES AND 8642 05:33:40,400 --> 05:33:42,160 THINK THAT HOW WE CAN AT LEAST 8643 05:33:42,160 --> 05:33:45,480 TRY TO NAVIGATE THE SYSTEM THAT 8644 05:33:45,480 --> 05:33:49,680 IS REALLY PERPLEX AND DIFFICULT. 8645 05:33:49,680 --> 05:33:52,480 NIH LEADERSHIP CAME UP BOTH IN 8646 05:33:52,480 --> 05:33:53,840 CONTEXT OF RESPONSIBLE DATA 8647 05:33:53,840 --> 05:33:55,880 SHARING PRACTICES CREATING 8648 05:33:55,880 --> 05:33:57,480 REGULATIONS IN OVERSIGHT IN 8649 05:33:57,480 --> 05:34:00,840 FIELD OF AI AND AL AND MORE 8650 05:34:00,840 --> 05:34:02,560 SIGNIFICANT ETHICS REGULATIONS 8651 05:34:02,560 --> 05:34:03,560 AND THINK IN CONTEXT OF 8652 05:34:03,560 --> 05:34:05,600 RESPONSIBLE DATA SHARING IS A 8653 05:34:05,600 --> 05:34:07,800 KEY AREA THAT NIH CAN PLAY A 8654 05:34:07,800 --> 05:34:09,040 ROLE AND SOME DISCUSSION IS HERE 8655 05:34:09,040 --> 05:34:11,840 ABOUT INCREASING SOLIDARITY 8656 05:34:11,840 --> 05:34:13,280 ABOUT NEED THAT WE NORMALLY 8657 05:34:13,280 --> 05:34:15,160 THINK ABOUT RESEARCH THAT IS 8658 05:34:15,160 --> 05:34:16,240 SOMETHING AIMED FOR EVERYONE AND 8659 05:34:16,240 --> 05:34:17,480 PEOPLE ARE STILL PARTICIPATING 8660 05:34:17,480 --> 05:34:19,040 FOR PUBLIC GOOD AND WE DON'T 8661 05:34:19,040 --> 05:34:20,960 HAVE SOLIDARITY THAT COMES WITH 8662 05:34:20,960 --> 05:34:23,720 IT. IN EUROPEAN COUNTRIES, DATA 8663 05:34:23,720 --> 05:34:25,280 COLLECTED FOR RESEARCH GOES BACK 8664 05:34:25,280 --> 05:34:27,480 TO HEALTH -- NATIONAL HEALTH 8665 05:34:27,480 --> 05:34:29,440 CARE SYSTEM TO IMPROVE 8666 05:34:29,440 --> 05:34:30,840 EVERYONE'S HEALTH OUTCOMES. 8667 05:34:30,840 --> 05:34:33,080 WE DON'T HAVE A SIMILAR SYSTEM. 8668 05:34:33,080 --> 05:34:34,320 WE HAVE TO THINK ABOUT WHAT TO 8669 05:34:34,320 --> 05:34:37,840 DO ABOUT IT AND SOME DISCUSSIONS 8670 05:34:37,840 --> 05:34:39,640 ABOUT INCREASING 8671 05:34:39,640 --> 05:34:40,800 INTERDISCIPLINARY WORK AND NIH 8672 05:34:40,800 --> 05:34:43,040 FOR SURE IS WORKING ON IT TO DO. 8673 05:34:43,040 --> 05:34:44,360 I THINK THAT WE HAVE TO THINK 8674 05:34:44,360 --> 05:34:47,160 ABOUT HOW MUCH MORE TIME IT 8675 05:34:47,160 --> 05:34:48,240 TAKES TO HAVE THOSE 8676 05:34:48,240 --> 05:34:49,720 INTERDISCIPLINARY CONVERSATIONS 8677 05:34:49,720 --> 05:34:51,480 ACROSS STAKEHOLDERS AND TAKES 8678 05:34:51,480 --> 05:34:53,600 TIME AND INVESTMENT AND LEARNING 8679 05:34:53,600 --> 05:34:56,800 EACH OTHER'S LANGUAGES AND AS 8680 05:34:56,800 --> 05:34:58,680 MILDRED SAID REQUIRES US TO 8681 05:34:58,680 --> 05:35:00,760 THINK WHAT STAKEHOLDERS KNOW 8682 05:35:00,760 --> 05:35:01,920 THAT THEY DON'T KNOW THEY KNOW 8683 05:35:01,920 --> 05:35:03,240 AND TAKES TIME TO THINK ABOUT 8684 05:35:03,240 --> 05:35:05,720 HOW TO SUPPORT THAT AND THINK 8685 05:35:05,720 --> 05:35:07,960 ABOUT REVISING CURRICULUM TO 8686 05:35:07,960 --> 05:35:11,240 CREATE EMPATHY AND ALL 8687 05:35:11,240 --> 05:35:12,000 STAKEHOLDERS INVOLVED ABOUT 8688 05:35:12,000 --> 05:35:17,720 RISKS AND RIGHT TO REASONABLE 8689 05:35:17,720 --> 05:35:19,680 INFERENCE ABOUT MODELING OF 8690 05:35:19,680 --> 05:35:21,840 PREDICTIVE ISSUES THAT ARE 8691 05:35:21,840 --> 05:35:24,520 THINGS THAT NIH CAN BE ACTUALLY 8692 05:35:24,520 --> 05:35:26,920 INVOLVED AND REQUIRING 8693 05:35:26,920 --> 05:35:27,680 CURRICULUM DEVELOPMENTS AND 8694 05:35:27,680 --> 05:35:29,080 RESPONSIBILITY AND NEEDS TO BE 8695 05:35:29,080 --> 05:35:30,680 MORE SAID ABOUT WHO GETS ACCESS 8696 05:35:30,680 --> 05:35:32,800 TO THE DATA AND WHAT DOES THAT 8697 05:35:32,800 --> 05:35:34,320 ENTITY GIVE BACK TO THE 8698 05:35:34,320 --> 05:35:34,880 COMMUNITY? 8699 05:35:34,880 --> 05:35:36,440 I THINK THERE IS A REASON FOR US 8700 05:35:36,440 --> 05:35:38,840 TO THINK THAT ACCESS TO DATA 8701 05:35:38,840 --> 05:35:43,120 THAT IS COLLECTED BY NIH-FUNDED 8702 05:35:43,120 --> 05:35:45,440 STUDIES SHOULD COME WITH SOME 8703 05:35:45,440 --> 05:35:48,200 PUBLIC GOOD AS A RESULT IN 8704 05:35:48,200 --> 05:35:50,000 EXCHANGE FOR THAT ACCESS. AT 8705 05:35:50,000 --> 05:35:51,720 MOMENT WE DON'T HAVE IT. IN 8706 05:35:51,720 --> 05:35:53,840 FACT SECONDARY USERS CAN DO WITH 8707 05:35:53,840 --> 05:35:55,840 RESEARCH DATA WHATEVER THEY WANT 8708 05:35:55,840 --> 05:35:58,080 ALMOST. ALSO, IT MEANS IN FACT 8709 05:35:58,080 --> 05:36:00,280 THEY WILL BE RESPONSIBLE FOR 8710 05:36:00,280 --> 05:36:01,760 EXACERBATING HEALTH DISPARITIES 8711 05:36:01,760 --> 05:36:03,680 THAT IS SOMETHING THAT CAME UP 8712 05:36:03,680 --> 05:36:05,720 IN STUDY WITH LOW BLIND 8713 05:36:05,720 --> 05:36:07,040 INDIVIDUALS THAT EXPRESSED VERY 8714 05:36:07,040 --> 05:36:09,720 HIGH INTEREST IN PARTICIPATING 8715 05:36:09,720 --> 05:36:11,040 IN PRECISION MEDICINE RESEARCH 8716 05:36:11,040 --> 05:36:12,560 WILLING TO SHARE AND PROVIDE 8717 05:36:12,560 --> 05:36:14,560 DATA AND WHEN IT CAME TO WHO ARE 8718 05:36:14,560 --> 05:36:15,840 YOU WILLING TO SHARE DATA WITH 8719 05:36:15,840 --> 05:36:17,880 ARE YOU ALLOWING US TO SHARE 8720 05:36:17,880 --> 05:36:20,080 DATA WITH NIH RESEARCHER SNZ. 8721 05:36:20,080 --> 05:36:22,800 IT WAS YES AND RESEARCHERS -- 8722 05:36:22,800 --> 05:36:24,800 ACADEMIC RESEARCHERS AND 8723 05:36:24,800 --> 05:36:26,760 INSTITUTIONS, YES. 8724 05:36:26,760 --> 05:36:28,040 PHARMACEUTICAL AND PRIVATE 8725 05:36:28,040 --> 05:36:29,720 COMPANIES, DOWN. NO. WE WENT 8726 05:36:29,720 --> 05:36:31,680 AHEAD AND ASKED WHY. 8727 05:36:31,680 --> 05:36:33,280 REASON THEY SAID THEY ARE ONLY 8728 05:36:33,280 --> 05:36:35,160 ONES WHO DON'T CARE LATER ON IF 8729 05:36:35,160 --> 05:36:37,560 WE CAN SEE WHAT IS WRITTEN ON 8730 05:36:37,560 --> 05:36:39,520 DRUGS WHEN THEY DEVELOP DATA AND 8731 05:36:39,520 --> 05:36:41,120 MEDICATIONS ARE INACCESSIBLE 8732 05:36:41,120 --> 05:36:42,000 WITH INFORMATION AND EVEN THOUGH 8733 05:36:42,000 --> 05:36:44,040 THAT IS REQUIRED BY LAW AND WE 8734 05:36:44,040 --> 05:36:45,640 HAVE AMERICANS WITH DISABILITIES 8735 05:36:45,640 --> 05:36:47,760 LAW AND WE HAVE OTHER 8736 05:36:47,760 --> 05:36:48,960 LEGISLATION THAT REQUIRES IT. 8737 05:36:48,960 --> 05:36:50,800 THERE IS NO ENFORCEMENT. 8738 05:36:50,800 --> 05:36:52,600 SECONDARY USERS CAN USE DATA 8739 05:36:52,600 --> 05:36:58,440 BEING SHARED AND HAVE BENEFIT -- 8740 05:36:58,440 --> 05:37:01,280 NOT TO ENSURE THEY ARE IMPROVING 8741 05:37:01,280 --> 05:37:02,320 HEALTH POPULATIONS HEALTH AND 8742 05:37:02,320 --> 05:37:04,480 THERE IS QUESTIONS ABOUT 8743 05:37:04,480 --> 05:37:05,680 COMMUNITY ENGAGEMENT COMPONENT 8744 05:37:05,680 --> 05:37:07,520 TO EVALUATION PROCESSES AND 8745 05:37:07,520 --> 05:37:09,600 PRODUCTION OF BOTH DATA SHARING 8746 05:37:09,600 --> 05:37:13,320 PRACTICES AS WELL AS AI AND 8747 05:37:13,320 --> 05:37:15,840 TECHNIQUES THAT ARE AL AND 8748 05:37:15,840 --> 05:37:17,040 CONVERSATIONS ABOUT BENEFIT 8749 05:37:17,040 --> 05:37:18,760 SHARING AND REQUIRING SECONDARY 8750 05:37:18,760 --> 05:37:20,400 AND PRIMARY USERS TO ACTUALLY 8751 05:37:20,400 --> 05:37:22,680 BRING BACKING SOMETHING TO THE 8752 05:37:22,680 --> 05:37:23,960 COMMUNITY IS SOMETHING THAT ARE 8753 05:37:23,960 --> 05:37:25,280 THINGS THAT WE REALLY HAVE TO 8754 05:37:25,280 --> 05:37:26,200 THINK ABOUT. 8755 05:37:26,200 --> 05:37:27,840 YOU KNOW WHAT? 8756 05:37:27,840 --> 05:37:29,480 THINKING ABOUT IT ALSO IN 8757 05:37:29,480 --> 05:37:31,520 CONTEXT OF COVID-19. THAT IS A 8758 05:37:31,520 --> 05:37:33,000 EXAMPLE THAT CAME UP. OF 8759 05:37:33,000 --> 05:37:39,040 COURSE, THERE IS UURGENCY IN 8760 05:37:39,040 --> 05:37:40,880 COVID-19 WE WENT THROUGH FIRST 8761 05:37:40,880 --> 05:37:43,240 WAVE THAT WAS HORRENDOUS AND 8762 05:37:43,240 --> 05:37:45,560 INVESTED MONEY AND TIME AND 8763 05:37:45,560 --> 05:37:47,560 EFFORT FOR PUBLIC AND PRIVATE 8764 05:37:47,560 --> 05:37:49,040 COLLABORATIONS AND WE HAVE 8765 05:37:49,040 --> 05:37:51,600 COVID-19 VACCINE AND WANT TO 8766 05:37:51,600 --> 05:37:52,920 REMIND EVERYONE THERE HAVE BEEN 8767 05:37:52,920 --> 05:37:55,400 LOTS OF CONTROVERSIES AROUND IT 8768 05:37:55,400 --> 05:37:57,720 PFIZER IS NOW RAISING PRICES 8769 05:37:57,720 --> 05:38:00,600 ONCE VACCINES ARE NO LONGER 8770 05:38:00,600 --> 05:38:06,720 SUBSIDIZED OR THREATENING TO DO 8771 05:38:06,720 --> 05:38:09,000 IT AND MODERNA PROVIDING 8772 05:38:09,000 --> 05:38:09,840 COMPENSATION FOR TECHNIQUE AND 8773 05:38:09,840 --> 05:38:11,680 SO FORTH AND THEY REACHED 8774 05:38:11,680 --> 05:38:13,880 AGREEMENT THIS WEEK OR LAST WEEK 8775 05:38:13,880 --> 05:38:16,160 WITH NIH AND ARE THINGS TO BE 8776 05:38:16,160 --> 05:38:17,520 ARRANGED AND REGULATED BEFORE 8777 05:38:17,520 --> 05:38:19,920 THEY GET ACCESS TO DATA AND TO 8778 05:38:19,920 --> 05:38:22,320 BENEFITS OF MAKING A FORTUNE. 8779 05:38:22,320 --> 05:38:24,760 THEY HAVE TO KNOW THAT HAVING 8780 05:38:24,760 --> 05:38:26,640 ACCESS TO DATA COMES WITH 8781 05:38:26,640 --> 05:38:27,520 RESPONSIBILITY TO SHARE BENEFIT 8782 05:38:27,520 --> 05:38:30,600 AND ENSURING IT IS IN FACT USED 8783 05:38:30,600 --> 05:38:32,240 TO REDUCE HEALTH DISPARITIES AND 8784 05:38:32,240 --> 05:38:34,280 FOR BENEFITS OF EVERYONE IN THIS 8785 05:38:34,280 --> 05:38:37,280 COUNTRY AND, OF COURSE, OUTSIDE 8786 05:38:37,280 --> 05:38:39,760 OF IT. 8787 05:38:39,760 --> 05:38:40,200 THANKS. 8788 05:38:40,200 --> 05:38:42,160 >>SO, ONE, A COUPLE THINGS I 8789 05:38:42,160 --> 05:38:45,160 THINK NIH COULD DO WITH 8790 05:38:45,160 --> 05:38:46,600 LEADERSHIP POSITION AND OFTEN 8791 05:38:46,600 --> 05:38:48,160 ITS ABILITY TO FUND DIFFERENT 8792 05:38:48,160 --> 05:38:49,960 PROJECTS IS IT IS IN A REALLY 8793 05:38:49,960 --> 05:38:52,400 GOOD POSITION. FIRST OF ALL, 8794 05:38:52,400 --> 05:38:55,600 WHEN THEY DO SET POLICY, IT DOES 8795 05:38:55,600 --> 05:38:57,800 CREATE A KIND OF -- YOU KNOW, 8796 05:38:57,800 --> 05:39:00,760 SOMETHING THAT OTHERS SEEK TO 8797 05:39:00,760 --> 05:39:00,960 FOLLOW. 8798 05:39:00,960 --> 05:39:02,760 AND MAYBE IT IS NOT AS STRONG AS 8799 05:39:02,760 --> 05:39:05,000 WE WOULD WANT IN THE DATA 8800 05:39:05,000 --> 05:39:07,160 SHARING CONTEXT BUT IS BETTER 8801 05:39:07,160 --> 05:39:08,600 THAN WHAT WAS THERE BEFORE IT 8802 05:39:08,600 --> 05:39:11,160 EXISTED. THEY HAVE A BULLY 8803 05:39:11,160 --> 05:39:13,520 PULPIT KIND OF A WAY OF BEING 8804 05:39:13,520 --> 05:39:15,200 INFLUENTIAL. THIS IS 8805 05:39:15,200 --> 05:39:17,280 PARTICULARLY IMPORTANT IN -- IN 8806 05:39:17,280 --> 05:39:19,280 PRIVATE SECTOR EFFORTS THIS 8807 05:39:19,280 --> 05:39:22,440 REMAIN LARGELY, WELL, LESS 8808 05:39:22,440 --> 05:39:24,120 REGULATED. DON'T WANT TO SAY 8809 05:39:24,120 --> 05:39:25,360 UNREGULATED. FOLKS THAT DON'T 8810 05:39:25,360 --> 05:39:27,760 HAVE TO FOLLOW HIPAA OR FOLLOW 8811 05:39:27,760 --> 05:39:29,080 THE COMMON RULE BECAUSE THEY ARE 8812 05:39:29,080 --> 05:39:31,600 NOT FEDERALLY FUNDED OR HAVEN'T 8813 05:39:31,600 --> 05:39:35,520 THEMSELVES SIGNED A FEDERALWIDE 8814 05:39:35,520 --> 05:39:36,960 INSURANCE AGREEMENT. YOU NEED 8815 05:39:36,960 --> 05:39:41,040 SOME STANDARDS TO POINT TO. 8816 05:39:41,040 --> 05:39:42,200 DREADED PHARMA COMPANIES TENT 8817 05:39:42,200 --> 05:39:44,160 TEND TO HAVE A TARGET ON THEIR 8818 05:39:44,160 --> 05:39:46,280 BACK AND SCIENTISTS I SPEAK TO 8819 05:39:46,280 --> 05:39:48,000 IN THOSE COMPANIES WANT TO BE 8820 05:39:48,000 --> 05:39:49,120 DOING SOMETHING THAT WON'T GET 8821 05:39:49,120 --> 05:39:50,680 THEM INTO TROUBLE AND THEY WANT 8822 05:39:50,680 --> 05:39:53,240 TO BE FOLLOWING SOMEONE'S 8823 05:39:53,240 --> 05:39:54,160 EXAMPLE EVEN IF THERE ARE NO THE 8824 05:39:54,160 --> 05:39:56,800 PARTICULAR TYPES OF LAWS AND NIH 8825 05:39:56,800 --> 05:39:58,120 CAN DO THAT. 8826 05:39:58,120 --> 05:40:00,080 IN TERMS OF ITS ABILITY TO 8827 05:40:00,080 --> 05:40:02,120 CREATE FUNDING AND SUPPORT FOR 8828 05:40:02,120 --> 05:40:03,920 COMMUNITY ENGAGEMENT MODELS AND 8829 05:40:03,920 --> 05:40:09,720 DIFFERENT WAYS OF TESTING 8830 05:40:09,720 --> 05:40:12,480 DIFFERENT DATA STEWARDSHIP TRUST 8831 05:40:12,480 --> 05:40:16,160 WORTHY SHARING MODELS THERE IS 8832 05:40:16,160 --> 05:40:19,160 HUGE OPPORTUNITY THERE THERE IS 8833 05:40:19,160 --> 05:40:20,880 GOOD MODELS OUT THERE COMMUNITY 8834 05:40:20,880 --> 05:40:23,840 IS ENGAGED ACTIVELY IN DATA 8835 05:40:23,840 --> 05:40:24,960 SHARING DECISIONS AND OPINIONS 8836 05:40:24,960 --> 05:40:32,520 THAT ARE ACTIVE SOUGHT AND 8837 05:40:32,520 --> 05:40:34,120 COMMUNITY GROUPS AND RUNNING 8838 05:40:34,120 --> 05:40:36,320 REGISTRIES WITH ACADEMIC MEDICAL 8839 05:40:36,320 --> 05:40:41,360 CENTERS AND PHARMACEUTICAL 8840 05:40:41,360 --> 05:40:42,760 COMPANIES WHERE THERE IS SYNERGY 8841 05:40:42,760 --> 05:40:44,320 OF INTEREST AND DEVELOPMENT OF 8842 05:40:44,320 --> 05:40:46,080 DATA SHARING POLICIES DONE IN 8843 05:40:46,080 --> 05:40:47,440 CONJUNCTION WITH THE COMMUNITY 8844 05:40:47,440 --> 05:40:51,240 BUT IS NOT LOTS OF FUNDING OUT 8845 05:40:51,240 --> 05:40:53,080 THERE FOR THINGS LIKE THAT STWL 8846 05:40:53,080 --> 05:40:55,360 IS NOT A LOT OF RESEARCH AND 8847 05:40:55,360 --> 05:40:57,000 SCHOLARSHIP GOING INTO 8848 05:40:57,000 --> 05:40:58,280 EVALUATING HOW WELL MODELS WORK 8849 05:40:58,280 --> 05:41:01,280 AND HOW MUCH THEY CAN CONTRIBUTE 8850 05:41:01,280 --> 05:41:06,280 TO CHANGES IN POLICY WRIT LARGE. 8851 05:41:06,280 --> 05:41:08,960 ONE THING A LITTLE BIT 8852 05:41:08,960 --> 05:41:11,320 CONCLUSION AT LEAST I DON'T WANT 8853 05:41:11,320 --> 05:41:13,000 TO DRAW ONE THAT EVERYONE MIGHT 8854 05:41:13,000 --> 05:41:15,560 DRAW BUT COMMUNITIES TO ANSWER 8855 05:41:15,560 --> 05:41:18,200 TO TRUST REED SEARCH MIGHT BE 8856 05:41:18,200 --> 05:41:19,800 QUITE DIFFERENT AND ALLOWING 8857 05:41:19,800 --> 05:41:22,640 MORE OF A KIND OF 1,000 FLOWERS 8858 05:41:22,640 --> 05:41:24,680 BLOOD APPROACH WE ARE ABLE TO 8859 05:41:24,680 --> 05:41:25,920 LEARN FROM. SOMEBODY HAS TO PUT 8860 05:41:25,920 --> 05:41:29,680 SOMETHING ON THE TABLE FOR THAT 8861 05:41:29,680 --> 05:41:32,920 TO HAPPEN MAYBE THERE COULD BE 8862 05:41:32,920 --> 05:41:34,200 DEVELOPMENT OF CORRECTOR OF 8863 05:41:34,200 --> 05:41:35,640 EXCELLENCE AROUND 8864 05:41:35,640 --> 05:41:40,800 COMMUNITY-INFORMED RESEARCH THAT 8865 05:41:40,800 --> 05:41:42,800 BUILDS ON THESE MICRO EXAMPLES 8866 05:41:42,800 --> 05:41:44,600 THROUGHOUT THE COUNTRY AND EVEN 8867 05:41:44,600 --> 05:41:46,400 ABROAD THAT WE CAN LEARN FROM 8868 05:41:46,400 --> 05:41:49,280 AND START TO INSIST TO BE 8869 05:41:49,280 --> 05:41:51,480 DEPLOYED AT SOME SORT OF MORE 8870 05:41:51,480 --> 05:41:52,800 SCALED LEVEL. BECAUSE TODAY, WE 8871 05:41:52,800 --> 05:41:54,680 HAVE POCKETS OF REALLY GOOD 8872 05:41:54,680 --> 05:41:56,400 THINGS THAT ARE HAPPENING AND 8873 05:41:56,400 --> 05:41:58,200 YET THEY ARE NOT VERY WIDELY 8874 05:41:58,200 --> 05:42:01,560 KNOWN AND NOBODY ELSE IS ABLE TO 8875 05:42:01,560 --> 05:42:03,040 LEARN FROM THEM AND THEY CAN'T 8876 05:42:03,040 --> 05:42:05,000 BE CERTAINLY BUBBLED UP TO THE 8877 05:42:05,000 --> 05:42:06,760 LEVEL WHERE WE CAN HAVE, YOU 8878 05:42:06,760 --> 05:42:08,440 KNOW, SOME CHANGES IN POLICY 8879 05:42:08,440 --> 05:42:11,120 THAT WOULD RESULT BECAUSE WE 8880 05:42:11,120 --> 05:42:12,120 HAVE TESTED SOME THINGS AND 8881 05:42:12,120 --> 05:42:13,720 FOUND THEY TEND TO WORK BETTER 8882 05:42:13,720 --> 05:42:16,040 AND NIH IS IN A REALLY GOOD 8883 05:42:16,040 --> 05:42:17,120 POSITION TO FUND SOME OF THAT 8884 05:42:17,120 --> 05:42:19,160 WORK AND CONGRESS HAS TO GIVE 8885 05:42:19,160 --> 05:42:20,560 THEM SOME MONEY TO FUND SOME OF 8886 05:42:20,560 --> 05:42:21,280 THAT WORK. 8887 05:42:21,280 --> 05:42:23,360 I THINK IT WOULD BE A VALUABLE 8888 05:42:23,360 --> 05:42:25,280 USE OF RESOURCES. 8889 05:42:25,280 --> 05:42:26,960 YOU MENTIONED SHARING OF 8890 05:42:26,960 --> 05:42:28,440 BENEFITS AND A COUPLE PANELS HAD 8891 05:42:28,440 --> 05:42:30,440 IDEA OF PAYING FOR DATA CAME UP. 8892 05:42:30,440 --> 05:42:32,360 I WANTED TO SHARE I'M NOT SURE 8893 05:42:32,360 --> 05:42:35,440 WHAT NIH CAN DO AROUND THAT. 8894 05:42:35,440 --> 05:42:37,680 OTHER THAN MAYBE FROM AN LC 8895 05:42:37,680 --> 05:42:39,400 PERSPECTIVE, YOU KNOW, THERE HAS 8896 05:42:39,400 --> 05:42:41,920 BEEN THIS SORT OF GENERAL 8897 05:42:41,920 --> 05:42:43,080 THOUGHT THAT IF WE PAY PEOPLE 8898 05:42:43,080 --> 05:42:45,920 FOR DATA, WE WILL BE POTENTIALLY 8899 05:42:45,920 --> 05:42:47,840 GIVING THEM A COERCESIVE 8900 05:42:47,840 --> 05:42:50,040 INCENTIVE TO SHARE DATA IN A 8901 05:42:50,040 --> 05:42:51,360 CONTEXT WHERE THAT WOULDN'T BE 8902 05:42:51,360 --> 05:42:52,920 GOOD FOR THEM IS PARTICULARLY A 8903 05:42:52,920 --> 05:42:54,560 CONCERN OF MARGINALIZED 8904 05:42:54,560 --> 05:42:56,600 POPULATIONS BEING SORT OF ABUSED 8905 05:42:56,600 --> 05:42:57,960 BECAUSE THEY NEED A RESOURCE. 8906 05:42:57,960 --> 05:42:59,600 IF WE ARE GOING TO PAY THEM FOR 8907 05:42:59,600 --> 05:43:01,600 THEIR DATA, THAT WILL BE 8908 05:43:01,600 --> 05:43:03,840 PROBLEMATIC FROM AN ETHICS 8909 05:43:03,840 --> 05:43:04,800 STANDPOINT. I GET ALL OF. THAT 8910 05:43:04,800 --> 05:43:06,440 I ALSO FEEL WE ARE NOT 8911 05:43:06,440 --> 05:43:08,080 ADDRESSING THE UNFAIRNESS AND 8912 05:43:08,080 --> 05:43:10,120 NOW I'M USING THE TERM FAIR NOT 8913 05:43:10,120 --> 05:43:13,360 IN TERMS OF THE TERM ACRONYM 8914 05:43:13,360 --> 05:43:15,240 FAIR BUT REGULAR OLD FAIR. THE 8915 05:43:15,240 --> 05:43:17,280 UNFAIRNESS OF THE FACT THAT 8916 05:43:17,280 --> 05:43:18,680 THERE ARE LOTS OF PEOPLE MAKING 8917 05:43:18,680 --> 05:43:21,720 MONEY ON THIS DATA AND THE ONLY 8918 05:43:21,720 --> 05:43:23,360 PERSON WHO IS NOT IS THE PERSON 8919 05:43:23,360 --> 05:43:25,200 WHO CONTRIBUTED TO IT. IS THERE 8920 05:43:25,200 --> 05:43:27,360 A RETURN OF VALUE IN ADDITION TO 8921 05:43:27,360 --> 05:43:28,720 RETURNING DATA TO COMMUNITIES TO 8922 05:43:28,720 --> 05:43:31,200 DO RESEARCH ON THAT THAT IS 8923 05:43:31,200 --> 05:43:33,880 SOMETHING THAT SUE BAKAN DID 8924 05:43:33,880 --> 05:43:35,280 EARLY WORK AND SO PLEASED TO SEE 8925 05:43:35,280 --> 05:43:36,920 HER NAME UP THERE I HAVEN'T SEEN 8926 05:43:36,920 --> 05:43:38,840 HER IN A LONG TIME AND OTHERS 8927 05:43:38,840 --> 05:43:41,040 TOO. I SINGLE OUT TOO. I KNOW 8928 05:43:41,040 --> 05:43:42,640 OF WORK SHE DID QUITE A NUMBER 8929 05:43:42,640 --> 05:43:45,400 OF YEARS AGO. I WAS SO 8930 05:43:45,400 --> 05:43:46,320 IMPRESSED BY IT BUT THE IDEA 8931 05:43:46,320 --> 05:43:50,440 THAT SOME OF THE BENEFIT IS 8932 05:43:50,440 --> 05:43:51,720 COMMERCIAL IN THE CONTEXT AND 8933 05:43:51,720 --> 05:43:54,360 WHY TO VICTOR GOT SPOILS OF ALL 8934 05:43:54,360 --> 05:43:56,720 OF THAT WHEN COMMUNITIES CAN'T 8935 05:43:56,720 --> 05:43:58,600 ACCESS DRUGS THAT GET DEVELOPED 8936 05:43:58,600 --> 05:44:00,120 AND DON'T GET ANY COMPENSATION 8937 05:44:00,120 --> 05:44:01,400 FOR THE RISK THAT THEY HAVE 8938 05:44:01,400 --> 05:44:03,480 ASSUMED IN CONTRIBUTING THEIR 8939 05:44:03,480 --> 05:44:05,640 DATA THAT IS IN MY VIEW WHAT THE 8940 05:44:05,640 --> 05:44:07,480 COMPENSATION IS FOR AND IT IS 8941 05:44:07,480 --> 05:44:09,120 NOT -- IF YOU STRUCTURE THE 8942 05:44:09,120 --> 05:44:10,840 RESEARCH SO IT IS NOT ABUSIVE 8943 05:44:10,840 --> 05:44:13,360 YOU ARE NOT LURING PEOPLE INTO A 8944 05:44:13,360 --> 05:44:15,280 BAD SITUATION. YOU ARE GIVING 8945 05:44:15,280 --> 05:44:16,440 THEM VALUE FOR THEIR TIME IF 8946 05:44:16,440 --> 05:44:18,840 THEY FILLED OUT A SURVEY AND FOR 8947 05:44:18,840 --> 05:44:21,120 BEING WILLING TO ENGAGE IN AN 8948 05:44:21,120 --> 05:44:23,280 ENTERPRISE THAT WE CANNOT 8949 05:44:23,280 --> 05:44:25,040 COMPLETELY ELIMINATE THE PRIVACY 8950 05:44:25,040 --> 05:44:28,600 RISKS FOR. 8951 05:44:28,600 --> 05:44:28,920 S 8952 05:44:28,920 --> 05:44:30,880 SO, THAT IS MY SOAP BOX FOR 8953 05:44:30,880 --> 05:44:32,320 AROUND THE PAYMENT. THANKS. 8954 05:44:32,320 --> 05:44:32,800 >>YEAH. 8955 05:44:32,800 --> 05:44:34,440 >>[LAUGHING]. 8956 05:44:34,440 --> 05:44:38,680 >>LIKE NCA PRE-NIL COMMENTARY 8957 05:44:38,680 --> 05:44:38,920 THERE. 8958 05:44:38,920 --> 05:44:41,040 >>I KNOW. I'M NOT AN EXPERT IN 8959 05:44:41,040 --> 05:44:43,880 THAT BUT DO HAVE SIMILAR 8960 05:44:43,880 --> 05:44:45,680 OPINIONS WOULDN'T BE SURPRISED. 8961 05:44:45,680 --> 05:44:51,160 >>METAPHOR, YEAH. EXCELLENT. 8962 05:44:51,160 --> 05:44:53,160 I THINK THE NIH HAS SHOWN THAT 8963 05:44:53,160 --> 05:44:54,680 THEY CAN MOVE THE NEEDLE. THEY 8964 05:44:54,680 --> 05:44:56,680 HAVE DONE SO, WHETHER IT IS 8965 05:44:56,680 --> 05:44:58,720 REPORTING OF CLINICAL TRIALS; 8966 05:44:58,720 --> 05:45:00,240 RIGHT? OVER THE LAST, YOU KNOW 8967 05:45:00,240 --> 05:45:02,160 SHGS JUST COUPLE OF YEARS YOU 8968 05:45:02,160 --> 05:45:03,720 MIGHT NOT HAVE GOTTEN IT 8969 05:45:03,720 --> 05:45:04,760 PUBLISHED IN THE JOURNAL YOU 8970 05:45:04,760 --> 05:45:07,320 WANTED TO BUT EACH OF THE 8971 05:45:07,320 --> 05:45:10,560 PATIENTS CONSENTING TO POTENTIAL 8972 05:45:10,560 --> 05:45:11,920 CLINICAL TRIAL TOOK RISK AND 8973 05:45:11,920 --> 05:45:13,000 ADVANCING KNOWLEDGE AND DOESN'T 8974 05:45:13,000 --> 05:45:14,880 COME UP WITH THERAPEUTIC 8975 05:45:14,880 --> 05:45:17,200 KNOWLEDGE AT LEAST REPORTING ON 8976 05:45:17,200 --> 05:45:21,400 CLINICAL TRIALS.GOV YOU VIOLATED 8977 05:45:21,400 --> 05:45:22,160 THAT RISK AND [INDISCERNIBLE] 8978 05:45:22,160 --> 05:45:23,920 RESEARCH GROUP YOU WON'T GET 8979 05:45:23,920 --> 05:45:25,680 THAT NEXT TRAUNCH OF MONEY IF 8980 05:45:25,680 --> 05:45:27,000 YOU DON'T REPORT IT ON N- CLIN 8981 05:45:27,000 --> 05:45:30,320 TAL TRIALS.GOV NO BARRIERS OR 8982 05:45:30,320 --> 05:45:32,640 JOURNAL EDITOR REPORTING IT AND 8983 05:45:32,640 --> 05:45:34,120 THEY HAVE MADE MOVES THERE 8984 05:45:34,120 --> 05:45:36,680 COMING TO VERSIONS COMING TO 8985 05:45:36,680 --> 05:45:37,880 TRANSPARENCY AND SIMPLIFICATION 8986 05:45:37,880 --> 05:45:39,760 AND IDEA THAT WAS FLOATING 8987 05:45:39,760 --> 05:45:41,480 AROUND ON THE TABLE WAS, YOU 8988 05:45:41,480 --> 05:45:44,040 KNOW, OTHER PARTS OF THE 8989 05:45:44,040 --> 05:45:46,400 GOVERNMENT HAVE TAKEN VERY 8990 05:45:46,400 --> 05:45:48,560 AGGRESSIVE LOBBIED ENTITIES FOOD 8991 05:45:48,560 --> 05:45:50,280 AND DRUGS COMING UP WITH 8992 05:45:50,280 --> 05:45:52,440 STANDARDIZE THE LABELS WE ARE 8993 05:45:52,440 --> 05:45:54,280 ALL ACQUIRED AND UNDERSTANDING 8994 05:45:54,280 --> 05:45:56,400 BETTER NOW HAVING BREAKFAST WITH 8995 05:45:56,400 --> 05:45:58,600 KIDS THERE IS A SERIAL BOX I 8996 05:45:58,600 --> 05:46:02,440 KNOW HOW MUCH SUGAR IS FL THERE 8997 05:46:02,440 --> 05:46:04,160 AND COMPARING HONEY NUT TO 8998 05:46:04,160 --> 05:46:07,320 REGULAR CHEEROS AND ONE TASTES 8999 05:46:07,320 --> 05:46:10,760 BETTER THAN OTHER AND IT HAS 9000 05:46:10,760 --> 05:46:13,000 TWICE AS MUCH SHYING AR DAD THAT 9001 05:46:13,000 --> 05:46:16,120 WASN'T POSSIBLE 20 YEARS AGO NO 9002 05:46:16,120 --> 05:46:18,800 ONE COULD UNDERSTAND NUMBER OF 9003 05:46:18,800 --> 05:46:19,480 CARBOHYDRATES IN SOMETHING AND 9004 05:46:19,480 --> 05:46:21,840 WE TEND TO OVERSELL THE 9005 05:46:21,840 --> 05:46:26,440 COMPLEXITY OF WHAT WE DO IN 9006 05:46:26,440 --> 05:46:27,600 BIOMEDICAL RESEARCH AND DO YOU 9007 05:46:27,600 --> 05:46:30,640 THINK WE HAVE AMAZING CONCEPTS 9008 05:46:30,640 --> 05:46:33,000 THAT DON'T RESULT IN 9009 05:46:33,000 --> 05:46:35,000 UNDERSTANDING WHAT COULD NIH BE 9010 05:46:35,000 --> 05:46:36,960 DOING WHEN COMING TO IMPROVING 9011 05:46:36,960 --> 05:46:38,840 UNDERSTANDING AND AWARENESS AS 9012 05:46:38,840 --> 05:46:42,320 OPPOSE THE TO JUST CONSENT? 9013 05:46:42,320 --> 05:46:44,920 IS A 1-PAGE REQUIRED LABEL FOR A 9014 05:46:44,920 --> 05:46:46,800 CLINICAL TRIAL OR DATA SHARING 9015 05:46:46,800 --> 05:46:49,720 THAT IS PARTICIPANT FOCUSED WITH 9016 05:46:49,720 --> 05:46:51,760 MINIMUM FONT SIZE AND MAXIMUM 9017 05:46:51,760 --> 05:46:54,240 LENGTH OF PAGE AND SF24 THAT WE 9018 05:46:54,240 --> 05:46:56,600 LIVE BY AND CAN ADHERE TO AND 9019 05:46:56,600 --> 05:46:58,040 HOW COME WE HAVEN'T DONE THAT 9020 05:46:58,040 --> 05:47:00,640 WITH NIH RULES AND FOR WHAT 9021 05:47:00,640 --> 05:47:02,560 PARTICIPANTS THOUGHTS THOUGHTS 9022 05:47:02,560 --> 05:47:05,680 ON PROVOCATIVE CONCEPTS 9023 05:47:05,680 --> 05:47:06,720 TRANSPARENCY LEVEL I HEARD THE 9024 05:47:06,720 --> 05:47:09,240 THEME OVER AND OVER AGAIN TODAY. 9025 05:47:09,240 --> 05:47:11,040 >>QUESTION OF CONSENT FORMS HAS 9026 05:47:11,040 --> 05:47:13,320 BEEN WOW WE KNOW THEY DON'T 9027 05:47:13,320 --> 05:47:13,520 WORK. 9028 05:47:13,520 --> 05:47:13,960 >>YEAH. 9029 05:47:13,960 --> 05:47:16,720 >>MORE INFORMATION WE GIVE WE 9030 05:47:16,720 --> 05:47:18,320 WILL EXCEED ALREADY 20 PAGE 9031 05:47:18,320 --> 05:47:19,040 DOCUMENTS THAT WON'T WORK. 9032 05:47:19,040 --> 05:47:19,400 >>YEAH. 9033 05:47:19,400 --> 05:47:21,440 >>WE HAVE TO THINK ABOUT 9034 05:47:21,440 --> 05:47:22,640 ALTERNATIVE WAYS THINKING ABOUT 9035 05:47:22,640 --> 05:47:24,600 CONSENT THAT IS NOT A FORM BUT 9036 05:47:24,600 --> 05:47:24,880 PROCESS. 9037 05:47:24,880 --> 05:47:27,040 IT HAS TO BE BUILT INTO SMALL 9038 05:47:27,040 --> 05:47:29,960 PIECES IN ACCESSIBLE WAYS. 9039 05:47:29,960 --> 05:47:32,680 NOT JARGONS. AGAIN, JUST EVEN 9040 05:47:32,680 --> 05:47:36,040 DISCUSSING TODAY IDEA OF DATA 9041 05:47:36,040 --> 05:47:37,960 LINKAGES. WHAT DID IT TAKE YOU? 9042 05:47:37,960 --> 05:47:39,600 HOUR TO EXPLAIN IT. WE DON'T 9043 05:47:39,600 --> 05:47:41,840 GET PARTICIPANTS TO READ A 9044 05:47:41,840 --> 05:47:43,480 CONSENT FORM FOR AN HOUR AND 9045 05:47:43,480 --> 05:47:44,800 READING ABOUT ONE TOPIC THAT 9046 05:47:44,800 --> 05:47:46,080 TOOK AN HOUR TO UNDERSTAND AND 9047 05:47:46,080 --> 05:47:47,280 WE HAVE TO THINK OF ALTERNATIVE 9048 05:47:47,280 --> 05:47:49,240 WAYS AND TRYING TO THINK HOW WE 9049 05:47:49,240 --> 05:47:52,240 DEAL WITH THAT BEYOND IT. I 9050 05:47:52,240 --> 05:47:54,000 WANT TO MENTION ALSO ABOUT 9051 05:47:54,000 --> 05:47:55,760 DEVEN'S COMMENTING ABOUT BENEFIT 9052 05:47:55,760 --> 05:47:57,840 SHARING AND, YOU KNOW, IT IS NOT 9053 05:47:57,840 --> 05:47:59,360 JUST THE MONEY. 9054 05:47:59,360 --> 05:48:01,200 IT IS -- IT IS REALLY NOT JUST 9055 05:48:01,200 --> 05:48:03,640 ABOUT THE MONEY AND WHETHER OR 9056 05:48:03,640 --> 05:48:06,000 NOT PARTICIPANTS ARE BEING 9057 05:48:06,000 --> 05:48:06,720 COMPENSATED FOR THEIR 9058 05:48:06,720 --> 05:48:07,640 PARTICIPATION BUT ONE IS ABOUT 9059 05:48:07,640 --> 05:48:09,040 ACCESS TO BENEFITS AFTER THAT 9060 05:48:09,040 --> 05:48:10,640 FROM THE KNOWLEDGE FROM THE 9061 05:48:10,640 --> 05:48:12,720 MEDICAL DEVICES FOR THE 9062 05:48:12,720 --> 05:48:13,680 TREATMENTS AND SO FORTH. 9063 05:48:13,680 --> 05:48:15,480 WE TEND TO THINK ABOUT RESEARCH 9064 05:48:15,480 --> 05:48:17,080 AS SOMETHING THAT ENDS ONCE WE 9065 05:48:17,080 --> 05:48:18,080 HAVE THE FINDINGS. 9066 05:48:18,080 --> 05:48:19,520 I THINK WE HAVE TO RETHINK HOW 9067 05:48:19,520 --> 05:48:20,720 WE THINK ABOUT RESEARCH THAT 9068 05:48:20,720 --> 05:48:22,440 STARTS AT THE END OF THE 9069 05:48:22,440 --> 05:48:24,200 FINDINGS AND HOW WE HAVE TO 9070 05:48:24,200 --> 05:48:26,360 START TO THINK HOW WE TRANSLATE 9071 05:48:26,360 --> 05:48:27,960 THOSE FINDINGS INTO ACTUAL 9072 05:48:27,960 --> 05:48:29,960 PRACTICE. RESEARCH CYCLE HAS TO 9073 05:48:29,960 --> 05:48:31,680 INCLUDE THAT PROCESS. UNTIL WE 9074 05:48:31,680 --> 05:48:34,240 KNOW THAT SOMETHING IS ACTUALLY 9075 05:48:34,240 --> 05:48:36,040 WORKING, WE HAVE TO CONSIDER 9076 05:48:36,040 --> 05:48:37,720 THIS RESEARCH AND WHOLE CYCLE OF 9077 05:48:37,720 --> 05:48:39,560 RESEARCH HAS TO BE LONGER AND 9078 05:48:39,560 --> 05:48:44,240 REGARDS TO BENEFIT SHARING AND 9079 05:48:44,240 --> 05:48:48,680 BEYOND FINANCE WE HAVE BEEN 9080 05:48:48,680 --> 05:48:50,240 OVERCONSERVATIVE HOW MUCH TO GET 9081 05:48:50,240 --> 05:48:51,400 FOR PARTICIPATION IN RESEARCH 9082 05:48:51,400 --> 05:48:53,320 AND ASSUMING THEY WILL BE ABUSED 9083 05:48:53,320 --> 05:48:55,760 OR COERCED AND THEY ARE GETTING 9084 05:48:55,760 --> 05:48:57,120 ALMOST NOTHING FOR RESEARCH 9085 05:48:57,120 --> 05:49:00,360 PARTICIPATION AND DATA BEING 9086 05:49:00,360 --> 05:49:06,960 USED BY MULTIPLE RESEARCHER FOR 9087 05:49:06,960 --> 05:49:08,680 AS LONG TIME AND NO ONE IS 9088 05:49:08,680 --> 05:49:09,600 CONCERNED ABOUT THAT ABOUT YOU 9089 05:49:09,600 --> 05:49:12,480 THEY WILL GET TO $25 OR 100. 9090 05:49:12,480 --> 05:49:15,680 CON ON. WE HAVE TO THINK ABOUT 9091 05:49:15,680 --> 05:49:16,640 CONCEPTUALIZING RISK AND 9092 05:49:16,640 --> 05:49:19,720 COMPENSATION AND WHO IS GETTING 9093 05:49:19,720 --> 05:49:26,240 WHAT AND FOR WHAT I THOUGHT 9094 05:49:26,240 --> 05:49:31,320 APPLAUSE WAS GOING TO BREAK OUT 9095 05:49:31,320 --> 05:49:33,400 FOR THOSE WATCHING ONLINE. 9096 05:49:33,400 --> 05:49:36,480 >>I DON'T WANT TO CONTRADICT 9097 05:49:36,480 --> 05:49:39,280 COMPLEXITY OF CONSENT FORMS AND 9098 05:49:39,280 --> 05:49:41,400 ONC NATIONAL OFFICE COORDINATOR 9099 05:49:41,400 --> 05:49:45,480 FOR HEALTH OIT SPENT MONEY TO 9100 05:49:45,480 --> 05:49:48,120 DEVELOP A MODEL PRIVACY PRACTICE 9101 05:49:48,120 --> 05:49:52,080 LABEL INTEND TODAY CREATE A WAY 9102 05:49:52,080 --> 05:49:53,560 FOR CONSUMERS TO MAKE 9103 05:49:53,560 --> 05:49:56,440 COMPARISONS ACROSS DIFFERENT 9104 05:49:56,440 --> 05:49:58,920 TYPES OF CONSUMER IF FACING 9105 05:49:58,920 --> 05:50:00,760 TECHNOLOGY PRODUCTS BEFORE THEY 9106 05:50:00,760 --> 05:50:03,040 USE THEM IN A FOOD LABEL WAY TO 9107 05:50:03,040 --> 05:50:05,960 GET THEM TO STANDARDIZE HOW THEY 9108 05:50:05,960 --> 05:50:07,240 TALKED ABOUT DIFFERENT ASPECTS 9109 05:50:07,240 --> 05:50:09,680 OF DATA SHARING AND TO BE ABLE 9110 05:50:09,680 --> 05:50:12,200 TO PRESENT THAT INFORMATION IN A 9111 05:50:12,200 --> 05:50:15,200 COHERENT WAY ACROSS MULTIPLE 9112 05:50:15,200 --> 05:50:17,680 PRODUCTS FOR CONSUMERS THAT WAS 9113 05:50:17,680 --> 05:50:21,280 -- IT WAS A WELL DONE PIECE OF 9114 05:50:21,280 --> 05:50:23,080 WORK THAT WAS VOLUNTARY FOR ANY 9115 05:50:23,080 --> 05:50:24,360 TECHNOLOGY TO FILL IT OUT AND 9116 05:50:24,360 --> 05:50:26,480 YOU CAN PROBABLY GUESS HOW MANY 9117 05:50:26,480 --> 05:50:30,360 TECHNOLOGIES FILLED IT OUT. 9118 05:50:30,360 --> 05:50:32,560 ZERO. MOSTLY BECAUSE CHALLENGED 9119 05:50:32,560 --> 05:50:34,480 WITH NOTION THEY WOULD HAVE TO 9120 05:50:34,480 --> 05:50:37,960 FIT THEIR 15-PAGE PRIVACY POLICY 9121 05:50:37,960 --> 05:50:41,160 INTO 8 NEAT LITTLE BOXES WITHOUT 9122 05:50:41,160 --> 05:50:43,920 ANY NUANCE OR CAVEATS WAS NOT 9123 05:50:43,920 --> 05:50:45,240 SOMETHING THAT THEY WERE PREPARE 9124 05:50:45,240 --> 05:50:49,120 THE TO DO. ON TOP OF THAT, 9125 05:50:49,120 --> 05:50:53,240 THERE IS LEGAL DIMENSION AROUND 9126 05:50:53,240 --> 05:50:57,280 FEDERAL TRADE COMMISSIONS TO 9127 05:50:57,280 --> 05:50:58,480 CRACK DOWN ON DECEPTION AND IF 9128 05:50:58,480 --> 05:51:01,880 IT TURNS OWE THE FTC THINKS YOU 9129 05:51:01,880 --> 05:51:03,880 ARE BEING DECEPTIVE YOU MIGHT 9130 05:51:03,880 --> 05:51:05,640 PAY A BIG FAT FINE THAT IS 9131 05:51:05,640 --> 05:51:08,160 CERTAINLY AT ISSUE AND IS SOME 9132 05:51:08,160 --> 05:51:10,040 YOU KNOW WOULD BE INTERESTING TO 9133 05:51:10,040 --> 05:51:11,960 DUST THAT EFFORT OFF THINKING 9134 05:51:11,960 --> 05:51:14,120 ABOUT HOW IT MIGHT BE APPLICABLE 9135 05:51:14,120 --> 05:51:17,680 IN CONTEXT OF TRANSPARENCY 9136 05:51:17,680 --> 05:51:20,200 AROUND RESEARCH DATA SHARING 9137 05:51:20,200 --> 05:51:22,040 BECAUSE IT -- THEY DID EFFORT 9138 05:51:22,040 --> 05:51:24,280 TWICE AND DID IT FIRST TIME AND 9139 05:51:24,280 --> 05:51:28,040 WENT TO PUBLIC AND GOT 9140 05:51:28,040 --> 05:51:29,640 ADDITIONAL COMMENTARY REVISING 9141 05:51:29,640 --> 05:51:32,880 IT AGAIN AND TWO VERSIONS OF 9142 05:51:32,880 --> 05:51:35,280 THIS FLOATING AROUND FOR WHAT IT 9143 05:51:35,280 --> 05:51:36,520 IS WORTH. 9144 05:51:36,520 --> 05:51:37,920 >>I WOULDN'T TRUST CONSENT ALL 9145 05:51:37,920 --> 05:51:39,520 TOGETHER BUT THINK ABOUT HOW IT 9146 05:51:39,520 --> 05:51:40,800 IS USABLE. 9147 05:51:40,800 --> 05:51:41,240 >>YEAH. 9148 05:51:41,240 --> 05:51:43,320 >>FOR PARTICIPANTS AND THINKING 9149 05:51:43,320 --> 05:51:45,960 ABOUT STARTING TO TEST THEM AND 9150 05:51:45,960 --> 05:51:48,040 WHAT ARE IMPLICATIONS OF 9151 05:51:48,040 --> 05:51:49,320 MISUNDERSTANDING AND HAD 9152 05:51:49,320 --> 05:51:50,360 CONVERSATIONS AS WELL AND WHO 9153 05:51:50,360 --> 05:51:52,320 WILL BE LEFT OUT AS WELL AND 9154 05:51:52,320 --> 05:51:55,000 THINK THAT CONSENT FORMS ARE 9155 05:51:55,000 --> 05:51:57,360 OVERCOMPLICATED WAY TOO LONG. 9156 05:51:57,360 --> 05:51:59,000 WE KNOW THAT. WE NEED TO BREAK 9157 05:51:59,000 --> 05:52:01,160 IT DOWN AND MAKE IT MORE 9158 05:52:01,160 --> 05:52:02,560 INTERACTIVE AND SOMETHING MORE 9159 05:52:02,560 --> 05:52:04,760 ATTRACTIVE AND ONLINE SYSTEMS 9160 05:52:04,760 --> 05:52:05,800 AND VIDEOS AND SOMETHING THAT 9161 05:52:05,800 --> 05:52:08,480 PEOPLE CAN RELATE TO AND READ 9162 05:52:08,480 --> 05:52:12,280 AND LISTEN TO AND KIND OF 9163 05:52:12,280 --> 05:52:17,680 UNDERSTAND AND SO FORTH YEAH. 9164 05:52:17,680 --> 05:52:18,880 >>PRESUMABLY WE HAVE A QUESTION 9165 05:52:18,880 --> 05:52:20,280 FROM ONLINE. 9166 05:52:20,280 --> 05:52:22,760 >>WE DO THANKS AGAIN I'M JESSE 9167 05:52:22,760 --> 05:52:26,200 FROM THE NIH. I WILL ATTEMPT TO 9168 05:52:26,200 --> 05:52:27,520 CONTEXTUALIZE TWO QUESTIONS IT 9169 05:52:27,520 --> 05:52:29,520 THAT CAME IN, IN PREVIOUS PANELS 9170 05:52:29,520 --> 05:52:32,240 FOR THIS PANEL. I THINK A 9171 05:52:32,240 --> 05:52:33,560 PROPER CONTEXT FOR IT IS 9172 05:52:33,560 --> 05:52:34,640 THINKING ABOUT TENSION OF 9173 05:52:34,640 --> 05:52:36,640 TIMELINES. 9174 05:52:36,640 --> 05:52:40,480 SO, THE IDEA THAT COMMUNE 9175 05:52:40,480 --> 05:52:43,320 ENGAGEMENT TAKES A LONG TIME AND 9176 05:52:43,320 --> 05:52:44,520 TECHNOLOGIES WE ARE TALKING 9177 05:52:44,520 --> 05:52:46,640 ABOUT TODAY ARE EVOLVING 9178 05:52:46,640 --> 05:52:49,720 END-TO-END SQUARED TO END-TO-END 9179 05:52:49,720 --> 05:52:55,320 WHATEVER IS THANKS; RIGHT? 9180 05:52:55,320 --> 05:52:57,440 TWO QUESTIONS COMING UP IN THIS 9181 05:52:57,440 --> 05:52:59,120 SPACE IS IF WE WANT TO MAINTAIN 9182 05:52:59,120 --> 05:53:01,520 COMMUNITY TRUST WITH CONSIDER GS 9183 05:53:01,520 --> 05:53:03,480 TO CULTURAL DIFFERENCES AND 9184 05:53:03,480 --> 05:53:04,800 EXPERIENCES HOW DO WE DO THAT 9185 05:53:04,800 --> 05:53:07,280 WITH COMMUNITY ENGAGEMENT AND 9186 05:53:07,280 --> 05:53:08,440 THAT TENSION IN PLACE? 9187 05:53:08,440 --> 05:53:10,640 I THINK YOU TALKED ABOUT THIS IN 9188 05:53:10,640 --> 05:53:11,880 THIS PANEL A LITTLE BIT. I WILL 9189 05:53:11,880 --> 05:53:14,680 PUT IT OUT THERE. THE SECOND 9190 05:53:14,680 --> 05:53:16,000 QUESTION IS SOME OF THESE TYPES 9191 05:53:16,000 --> 05:53:17,760 OF RESEARCH WE HAVE BEEN TALKING 9192 05:53:17,760 --> 05:53:19,520 ABOUT THAT HAVE EFFECTS THAT GO 9193 05:53:19,520 --> 05:53:22,920 BEYOND A SINGLE GENERATION THAT 9194 05:53:22,920 --> 05:53:25,320 IMPACT FAMILIES FOR GENERATIONS 9195 05:53:25,320 --> 05:53:28,960 TO COME. WE DID HEAR IN SOME OF 9196 05:53:28,960 --> 05:53:30,320 THE WEBINARS ABOUT HOW CERTAIN 9197 05:53:30,320 --> 05:53:32,520 COMMUNITIES DO TAKE THAT 9198 05:53:32,520 --> 05:53:34,200 GENERATIONAL IMPACT INTO 9199 05:53:34,200 --> 05:53:34,680 CONTEXT. 9200 05:53:34,680 --> 05:53:37,360 AND THE QUESTION IS HOW -- HOW 9201 05:53:37,360 --> 05:53:40,800 SHOULD WE DO THAT APPROPRIATELY 9202 05:53:40,800 --> 05:53:44,000 AND RESPONSIBLY TO MAKE THE BEST 9203 05:53:44,000 --> 05:53:46,440 FORM OF COMMUNITY ENGAGEMENT. 9204 05:53:46,440 --> 05:53:46,680 THANKS. 9205 05:53:46,680 --> 05:53:48,160 >>THANK YOU. I THINK WE HAVE 9206 05:53:48,160 --> 05:53:50,640 THREE MINUTES TO ADDRESS TWO 9207 05:53:50,640 --> 05:53:52,720 SMALL TOPICS ACROSS GENERATIONS. 9208 05:53:52,720 --> 05:53:55,120 I WILL ADDRESS THE FIRST ONE 9209 05:53:55,120 --> 05:53:57,520 RELATED TO JUST TECHNOLOGY 9210 05:53:57,520 --> 05:53:59,320 COMMUNITY ENGAGEMENT TENSION. 9211 05:53:59,320 --> 05:54:02,320 IT IS PARTLY A FALSE CHOICE, TO 9212 05:54:02,320 --> 05:54:03,720 BE BLUNT. NONE OF OUR 9213 05:54:03,720 --> 05:54:05,320 TECHNOLOGIES MONTH OF THAT FAST. 9214 05:54:05,320 --> 05:54:07,960 WE HAVE TALKED ABOUT PRIVACY 9215 05:54:07,960 --> 05:54:09,520 PRESERVING RECORD LINKAGES FOR A 9216 05:54:09,520 --> 05:54:11,400 DECADE AND A HALF AND IS STILL A 9217 05:54:11,400 --> 05:54:13,720 NEW CONCEPT; RIGHT? TALKING 9218 05:54:13,720 --> 05:54:15,880 ABOUT COMMUNITIES BACK WHEN WE 9219 05:54:15,880 --> 05:54:17,960 WROTE THE HASH SOFTWARE A DECADE 9220 05:54:17,960 --> 05:54:19,800 AGO WE WOULD PROBABLY HAVE LOTS 9221 05:54:19,800 --> 05:54:21,240 MORE INFORMATION. CREATION OF 9222 05:54:21,240 --> 05:54:23,520 TECHNOLOGY AND IT SHOWING UP ON 9223 05:54:23,520 --> 05:54:24,440 NEW YORK TIMES AND IT ACTUALLY 9224 05:54:24,440 --> 05:54:27,000 BEING A VALUE TO AN END CONSUMER 9225 05:54:27,000 --> 05:54:28,960 IS STILL TYPICALLY A VERY LONG 9226 05:54:28,960 --> 05:54:31,640 TIME AND CONSUMER IS SEEING IT 9227 05:54:31,640 --> 05:54:33,640 LAUGHING AT CHATGPT THAT IS A 9228 05:54:33,640 --> 05:54:35,560 WEEK AND MOST OF WHAT WE ARE 9229 05:54:35,560 --> 05:54:39,400 DOING CHAT GP IT. IS REALLY 9230 05:54:39,400 --> 05:54:41,760 STUPID OR AMAZING AND WE DON'T 9231 05:54:41,760 --> 05:54:43,400 KNOW YET AND COMMUNITY 9232 05:54:43,400 --> 05:54:44,520 ENGAGEMENT IF DONE FROM 9233 05:54:44,520 --> 05:54:46,840 BEGINNING AS PART OF TECHNOLOGY 9234 05:54:46,840 --> 05:54:47,880 DEVELOPMENT IS NOT THE LONG -- 9235 05:54:47,880 --> 05:54:49,920 THERE IS A METAPHOR HERE. LONG 9236 05:54:49,920 --> 05:54:52,120 STICK IN THE POLL. IT IS A 9237 05:54:52,120 --> 05:54:54,480 SECOND LANGUAGE, I APOLOGIZE. 9238 05:54:54,480 --> 05:54:56,360 NOT IT WILL SLOW US DOWN AND 9239 05:54:56,360 --> 05:54:57,680 COMMUNITY ENGAGEMENT DOESN'T 9240 05:54:57,680 --> 05:55:01,320 NEED TO SLOW US DOWN. YOU HAVE 9241 05:55:01,320 --> 05:55:02,240 TO INEVITABLY GET THERE AND 9242 05:55:02,240 --> 05:55:04,880 START AT BEGINNING OPPOSED TO 9243 05:55:04,880 --> 05:55:06,360 WAITING AT THE END. NOT SURE. 9244 05:55:06,360 --> 05:55:08,000 >>GREAT. I WILL ADD TO THAT, 9245 05:55:08,000 --> 05:55:09,880 THAT WE HAVE TO THINK ABOUT 9246 05:55:09,880 --> 05:55:11,400 COMMUNITY ENGAGEMENT AS 9247 05:55:11,400 --> 05:55:12,640 ENGAGEMENT NOT ONLY FOR PURPOSE 9248 05:55:12,640 --> 05:55:14,280 OF SPECIFIC RESEARCH AND WE CARE 9249 05:55:14,280 --> 05:55:16,320 ABOUT COMMUNITIES AND WHY WE 9250 05:55:16,320 --> 05:55:17,760 ENGAGE WITH THEM AND CARE ABOUT 9251 05:55:17,760 --> 05:55:18,840 COMMUNITIES AND ASK WHAT THEY 9252 05:55:18,840 --> 05:55:21,040 NEED AND WHAT THEY WANT AND HOW 9253 05:55:21,040 --> 05:55:23,520 WE CAN FACILITATE TECHNOLOGIES 9254 05:55:23,520 --> 05:55:26,160 AND RESEARCH IMPROVING HEALTH 9255 05:55:26,160 --> 05:55:28,200 OUTCOMES AND DO THAT THROUGHOUT 9256 05:55:28,200 --> 05:55:29,680 LONG BEFORE THE GRANT AND POST 9257 05:55:29,680 --> 05:55:30,440 THE GRANT. 9258 05:55:30,440 --> 05:55:32,720 AND AS THE -- THE TECHNOLOGY IS 9259 05:55:32,720 --> 05:55:34,720 DEVELOPED, THAT WILL CUT ACROSS 9260 05:55:34,720 --> 05:55:35,720 GENERATIONS BECAUSE IF WE CARE 9261 05:55:35,720 --> 05:55:37,680 ABOUT THE COMMUNITY AND WE 9262 05:55:37,680 --> 05:55:38,960 ENGAGE WITH COMMUNITY FOR SAKE 9263 05:55:38,960 --> 05:55:41,160 OF ENGAGEMENT WITH THE COMMUNITY 9264 05:55:41,160 --> 05:55:43,000 RATHER THAN SAKE OF SPECIFIC 9265 05:55:43,000 --> 05:55:44,520 RESEARCH AND THINK IT IS A 9266 05:55:44,520 --> 05:55:46,440 MINDSET WE HAVE TO RETHINK 9267 05:55:46,440 --> 05:55:46,680 ABOUT. 9268 05:55:46,680 --> 05:55:49,680 >>I WOULD AGREE WITH THAT. 9269 05:55:49,680 --> 05:55:51,320 COMMUNITIES THEMSELVES ALREADY 9270 05:55:51,320 --> 05:55:51,840 EXIST; RIGHT? 9271 05:55:51,840 --> 05:55:52,680 >>YEAH. 9272 05:55:52,680 --> 05:55:54,040 >>TIMING IS NOT ABOUT 9273 05:55:54,040 --> 05:55:55,640 ORGANIZING THEM. THEY EXIST. 9274 05:55:55,640 --> 05:55:57,120 TIMING IS TIME IT TAKES TO 9275 05:55:57,120 --> 05:55:59,200 ENGAGE THEM IN A WAY THAT BUILDS 9276 05:55:59,200 --> 05:56:02,520 THEIR TRUST THAT I COMPLETELY 9277 05:56:02,520 --> 05:56:04,440 AGREE WITH MYIA WE HAVE THIS 9278 05:56:04,440 --> 05:56:06,520 THING AND WANT YOU TO REALLY 9279 05:56:06,520 --> 05:56:08,000 ENDORSE IT. NO. WE WANT TO 9280 05:56:08,000 --> 05:56:09,520 WORK WITH YOU. TELL US WHAT 9281 05:56:09,520 --> 05:56:12,000 YOUR CONCERNS ARE. I THINK THIS 9282 05:56:12,000 --> 05:56:13,960 IS PARTICULARLY TRUE IN CONTEXTS 9283 05:56:13,960 --> 05:56:16,080 WHERE YOU ARE -- WHERE YOU HAVE 9284 05:56:16,080 --> 05:56:17,560 ACADEMIC INSTITUTIONS IMBEDDED 9285 05:56:17,560 --> 05:56:20,960 IN COMMUNITIES THAT FOR TOO LONG 9286 05:56:20,960 --> 05:56:22,600 HAVE IGNORED CONCERNS OF 9287 05:56:22,600 --> 05:56:24,240 COMMUNITY AND GETTING IN THERE 9288 05:56:24,240 --> 05:56:26,440 STARTING WITH COMMUNITY 9289 05:56:26,440 --> 05:56:27,160 CONVERSATIONS AND YOU BUILT THAT 9290 05:56:27,160 --> 05:56:29,200 TRUST AND DO THE WORK TO TRULY 9291 05:56:29,200 --> 05:56:33,080 KEEP THAT TRUST, YOU CAN -- YOU 9292 05:56:33,080 --> 05:56:35,840 CAN RIDE THAT RAIL INTO 9293 05:56:35,840 --> 05:56:36,200 ETERNITY. 9294 05:56:36,200 --> 05:56:36,640 >>YEAH. 9295 05:56:36,640 --> 05:56:38,720 >>AS LONG AS YOU CONTINUE TO DO 9296 05:56:38,720 --> 05:56:39,520 THE WORK. 9297 05:56:39,520 --> 05:56:42,160 IT IS WELL WORTH THE INVESTMENT 9298 05:56:42,160 --> 05:56:44,120 AT THE FRONT END. WITHOUT IT, 9299 05:56:44,120 --> 05:56:45,760 YOU COULD VERY EASILY GET 9300 05:56:45,760 --> 05:56:46,840 UNDERMINED IN WHAT YOU ARE 9301 05:56:46,840 --> 05:56:48,680 TRYING TO DO AND WITH IT EVEN 9302 05:56:48,680 --> 05:56:50,240 THOUGH IT TAKES TIME IN THE 9303 05:56:50,240 --> 05:56:51,960 BEGINNING, YOU CAN BANK ON THAT 9304 05:56:51,960 --> 05:56:53,680 SUCCESS AS LONG AS YOU CONTINUE 9305 05:56:53,680 --> 05:56:55,440 TO NOURISH THOSE RELATIONSHIPS 9306 05:56:55,440 --> 05:56:57,360 AND THAT THEY ARE TRULY 9307 05:56:57,360 --> 05:56:59,480 BIDIRECTIONAL AND NOT HOW CAN WE 9308 05:56:59,480 --> 05:57:01,280 GET THEM TO SAY YES TO WHAT WE 9309 05:57:01,280 --> 05:57:01,720 WANT TO DO. 9310 05:57:01,720 --> 05:57:04,040 >>IT REQUIRES THE SAME 9311 05:57:04,040 --> 05:57:05,880 OPERATIONAL RIGOR AS ANY OTHER 9312 05:57:05,880 --> 05:57:06,880 PART OF RESEARCH. 9313 05:57:06,880 --> 05:57:07,280 >>YEAH. 9314 05:57:07,280 --> 05:57:08,080 >>IMAGINE. 9315 05:57:08,080 --> 05:57:10,320 >>IT IS NOT FLUFFY. IT IS HARD 9316 05:57:10,320 --> 05:57:12,640 WORK AND OBJECTIVE AND 9317 05:57:12,640 --> 05:57:13,920 SUBJECTIVE AND EVERYTHING THAT 9318 05:57:13,920 --> 05:57:15,080 BIOMEDICAL SCIENCE IS SUPPOSED 9319 05:57:15,080 --> 05:57:17,720 TO DO RUNNING A CLINICAL TRIEF 9320 05:57:17,720 --> 05:57:23,760 OF 12,500 PATIENTS RELATED TO 9321 05:57:23,760 --> 05:57:25,320 ANTHESIA TECHNIQUES INVOLVED A 9322 05:57:25,320 --> 05:57:27,680 YEAR BEFORE SELECTION OUTCOME 9323 05:57:27,680 --> 05:57:29,600 BEFORE WE GOT THE GRANT. WE 9324 05:57:29,600 --> 05:57:31,880 HAVE A PARTICIPANT PANEL FOR 6.5 9325 05:57:31,880 --> 05:57:34,280 YEARS EVERY MONTH WE HAVE A 9326 05:57:34,280 --> 05:57:35,920 CONVERSATION WITH THEM NOT WHEN 9327 05:57:35,920 --> 05:57:37,840 FUNDERS DECIDE TO ASK HOW WE 9328 05:57:37,840 --> 05:57:40,200 ENGAGE WITH THEM AND AS A RESULT 9329 05:57:40,200 --> 05:57:41,680 EVERY MONTH SOMETHING ABOUT 9330 05:57:41,680 --> 05:57:43,560 TRIAL BENEFITS FROM ENGAGEMENT 9331 05:57:43,560 --> 05:57:45,200 PART OF OPERATIONAL MECHANISM 9332 05:57:45,200 --> 05:57:48,320 AND LIKE COMMITTEE AND 9333 05:57:48,320 --> 05:57:48,960 PARTICIPANTS AND TALK TO PANEL 9334 05:57:48,960 --> 05:57:52,320 MORE OFTEN THAN WE DO IRB PART 9335 05:57:52,320 --> 05:57:54,120 OF OPERATIONAL RIGSOR VIEWING 9336 05:57:54,120 --> 05:57:55,760 COMMUNITY ENGAGEMENT PART OF 9337 05:57:55,760 --> 05:57:57,680 SCIENCE OPPOSED TO INFLUENCING 9338 05:57:57,680 --> 05:57:58,840 SCIENCE THERE IS NO TIME 9339 05:57:58,840 --> 05:58:00,640 TENSION. IT IS ACTUALLY 9340 05:58:00,640 --> 05:58:01,880 POTENTIALLY GETTING YOU TO 9341 05:58:01,880 --> 05:58:03,280 ASKING THE RIGHT QUESTIONS SOON 9342 05:58:03,280 --> 05:58:06,240 ERR. WE KNOW THAT MOEFT OF THE 9343 05:58:06,240 --> 05:58:08,480 MONEY WE WASTE WE ARE ASKING THE 9344 05:58:08,480 --> 05:58:10,680 WRONG QUESTIONS AND MIGHT SAVE 9345 05:58:10,680 --> 05:58:12,120 US TIME DOING THAT. 9346 05:58:12,120 --> 05:58:13,920 I WOULD LOVE TO ANSWER THE 9347 05:58:13,920 --> 05:58:15,360 SECOND QUESTION, JOOESEE. WE 9348 05:58:15,360 --> 05:58:17,440 WILL TRY TO STAY ON TIME AND 9349 05:58:17,440 --> 05:58:19,240 WILL THANK YOU TO THE COLLEAGUES 9350 05:58:19,240 --> 05:58:21,920 TO MAYA AND DEVEN. 9351 05:58:21,920 --> 05:58:22,840 >>[APPLAUSE]. 9352 05:58:22,840 --> 05:58:24,920 >>WE WILL BE WRAPPING THIS UP 9353 05:58:24,920 --> 05:58:35,440 WITH A FEW COMMENTS, I BELIEVE. 9354 05:58:35,720 --> 05:58:37,720 >>THANK YOU. 9355 05:58:37,720 --> 05:58:40,040 >>JUST CLOSING THOUGHTS AND WE 9356 05:58:40,040 --> 05:58:41,360 ARE KEEPING YOU FROM THE 9357 05:58:41,360 --> 05:58:45,280 SUNSHINE OUTSIDE. WE RECOGNIZE 9358 05:58:45,280 --> 05:58:46,240 THIS. 9359 05:58:46,240 --> 05:58:48,440 YOU HAVE HEARD MY VOICE. I WILL 9360 05:58:48,440 --> 05:58:51,960 NOT SPEAK FOR A LITTLE BIT. 9361 05:58:51,960 --> 05:58:54,160 PILAR, YOUR CLOSING THOUGHTS 9362 05:58:54,160 --> 05:58:56,400 BRINGING THIS TOGETHER AND NEXT 9363 05:58:56,400 --> 05:58:56,640 STEPS? 9364 05:58:56,640 --> 05:59:00,800 >>WELL, I CAN GO. SO, FIRST OF 9365 05:59:00,800 --> 05:59:04,240 ALL, I GUESS THAT WE WANT TO SAY 9366 05:59:04,240 --> 05:59:07,840 AS COCHAIRS OF THE WORKING GROUP 9367 05:59:07,840 --> 05:59:09,440 THAT WE APPRECIATE EVERYONE 9368 05:59:09,440 --> 05:59:10,880 SPENDING TIME WITH US HERE TODAY 9369 05:59:10,880 --> 05:59:13,120 AND WORKING GROUP AND MANY 9370 05:59:13,120 --> 05:59:15,520 MEMBERS OF WORKING GROUP ARE 9371 05:59:15,520 --> 05:59:17,000 HERE AND THOSE THAT ARE NOT WILL 9372 05:59:17,000 --> 05:59:19,200 HEAR ABOUT IT AND WE WILL TAKE 9373 05:59:19,200 --> 05:59:21,560 COMMENTS WE HEARD INTO ACCOUNT 9374 05:59:21,560 --> 05:59:22,680 AS WE PREPARE OUR REPORT. 9375 05:59:22,680 --> 05:59:25,640 SO, YOU GUYS WILL HAVE INPUT AS 9376 05:59:25,640 --> 05:59:33,560 WELL. SO, THANK YOU ALL. 9377 05:59:33,560 --> 05:59:35,080 >>WONDERFUL. YES. THANK YOU 9378 05:59:35,080 --> 05:59:38,800 ALL FOR BEING HERE TODAY. I 9379 05:59:38,800 --> 05:59:40,800 THINK THAT REALLY IMPORTANT IN 9380 05:59:40,800 --> 05:59:43,080 ENGAGEMENT WORK WE LIKE TO MAKE 9381 05:59:43,080 --> 05:59:44,840 SURE WE LET PEOPLE KNOW WHEN 9382 05:59:44,840 --> 05:59:46,600 THEY SPEND TIME WITH US TO 9383 05:59:46,600 --> 05:59:49,200 ENGAGE HOW. WE WANT TO BE GOOD 9384 05:59:49,200 --> 05:59:51,440 STEWARDS OF PEOPLE'S TIME; 9385 05:59:51,440 --> 05:59:51,920 RIGHT? 9386 05:59:51,920 --> 05:59:54,240 AND ARTICULATE WHAT WE WILL DO 9387 05:59:54,240 --> 05:59:56,000 WITH INSIGHTS WE LEARNED AND HOW 9388 05:59:56,000 --> 05:59:58,360 TO GO FORWARD. I WANT TO SAY 9389 05:59:58,360 --> 06:00:01,720 THAT I WANT TO ECHO WHAT PILAR 9390 06:00:01,720 --> 06:00:05,800 SAYS AND WE HEARD A LOT TODAY 9391 06:00:05,800 --> 06:00:07,760 THAT CAN INFORM DELIBERATIONS OF 9392 06:00:07,760 --> 06:00:09,200 WORKING GROUP THAT IS PRESENTED 9393 06:00:09,200 --> 06:00:10,600 TO PARENT COMMITTEE AND YOU WILL 9394 06:00:10,600 --> 06:00:13,360 KNOW FROM BEGINNING SESSIONS WE 9395 06:00:13,360 --> 06:00:15,120 REPORT DIRECTLY TO DIRECTOR OF 9396 06:00:15,120 --> 06:00:19,040 NIH. WE CAN BE ABLE TO MAKE 9397 06:00:19,040 --> 06:00:23,520 OFFER OUR ADVISORY COMMENTS. 9398 06:00:23,520 --> 06:00:25,560 AS WELL, WE ALSO -- ANOTHER 9399 06:00:25,560 --> 06:00:27,920 THING I TOOK AWAY FROM TODAY IS 9400 06:00:27,920 --> 06:00:30,800 WE HEARD FROM A RICH 9401 06:00:30,800 --> 06:00:32,880 MULTI-DISCIPLINARY GROUP HERE. 9402 06:00:32,880 --> 06:00:34,840 AND I THOUGHT THAT IT HELP THE 9403 06:00:34,840 --> 06:00:36,720 ME TO KIND OF THINK MORE DEEPLY 9404 06:00:36,720 --> 06:00:39,440 ABOUT ENGAGEMENT WORK CAN 9405 06:00:39,440 --> 06:00:40,760 ACTUALLY INFORM RESEARCH 9406 06:00:40,760 --> 06:00:43,480 POLICIES AND PRACTICES AND 9407 06:00:43,480 --> 06:00:45,720 PROCEDURES AND I THINK THAT 9408 06:00:45,720 --> 06:00:48,000 SOMETIMES THAT SOUNDS LIKE A 9409 06:00:48,000 --> 06:00:50,520 SIMPLE IDEA AND WE LISTEN TO 9410 06:00:50,520 --> 06:00:53,440 PEOPLE AND USE IT TO INFORM OUR 9411 06:00:53,440 --> 06:00:55,320 WORK. AS WE HEARD HERE TODAY, 9412 06:00:55,320 --> 06:00:57,600 THAT CAN BE A SORT OF 9413 06:00:57,600 --> 06:00:58,760 COMPLICATED PROCESS AND 9414 06:00:58,760 --> 06:01:00,880 ESPECIALLY CONSIDERING HOW IT 9415 06:01:00,880 --> 06:01:02,960 NEEDS TO BE ITDERATIVE AND SO 9416 06:01:02,960 --> 06:01:03,200 FORTH. 9417 06:01:03,200 --> 06:01:05,040 THAT IS ANOTHER THING. I WOULD 9418 06:01:05,040 --> 06:01:07,800 SAY, THIRDLY, I REALLY 9419 06:01:07,800 --> 06:01:10,120 APPRECIATED THE SESSION AS WELL. 9420 06:01:10,120 --> 06:01:12,800 IN THIS PARTICULAR INSTANCE, WE 9421 06:01:12,800 --> 06:01:15,760 MADE CHOICES THAT WERE WITH NIH 9422 06:01:15,760 --> 06:01:19,360 AND WITH PYXIS ABOUT HOW TO 9423 06:01:19,360 --> 06:01:20,240 ENGAGEMENT WORK FOR THIS 9424 06:01:20,240 --> 06:01:22,120 PARTICULAR CHARGE RELATED TO 9425 06:01:22,120 --> 06:01:24,520 DATA SCIENCE AND OF COURSE NIH 9426 06:01:24,520 --> 06:01:26,640 HAS A WIDE IS SCOPE. I THIS I 9427 06:01:26,640 --> 06:01:28,640 THAT POTENTIALLY WANTS TO THINK 9428 06:01:28,640 --> 06:01:31,040 ABOUT ENGAGEMENT TOOLS FOR OTHER 9429 06:01:31,040 --> 06:01:33,240 QUESTIONS. SO, IT IS A CHANCE 9430 06:01:33,240 --> 06:01:35,640 TO REALLY THINK ABOUT, YOU KNOW, 9431 06:01:35,640 --> 06:01:37,480 HOW -- WHAT THEIR ENGAGEMENT 9432 06:01:37,480 --> 06:01:39,360 APPROACH MIGHT LOOK LIKE GOING 9433 06:01:39,360 --> 06:01:41,040 FORWARD. WE CAN CONSIDER THAT 9434 06:01:41,040 --> 06:01:43,400 AS AN EXTRACT COMMITTEE AND MAKE 9435 06:01:43,400 --> 06:01:45,920 ALSO RECOMMENDATIONS IN THAT 9436 06:01:45,920 --> 06:01:47,000 AREA AS WELL. 9437 06:01:47,000 --> 06:01:48,320 THANK YOU ALL. THANK YOU. 9438 06:01:48,320 --> 06:01:51,000 >>YEAH. THANK YOU. ECHOING 9439 06:01:51,000 --> 06:01:52,680 THANKS FROM EVERYBODY ELSE ON 9440 06:01:52,680 --> 06:01:54,160 THE PANEL HERE TODAY. 9441 06:01:54,160 --> 06:01:56,200 THANK YOU FOR SPENDING TIME WITH 9442 06:01:56,200 --> 06:01:56,360 US. 9443 06:01:56,360 --> 06:01:57,720 THANK YOU TO EVERYONE WHO IS 9444 06:01:57,720 --> 06:02:01,360 REALLY CONTRIBUTING TO THIS 9445 06:02:01,360 --> 06:02:03,520 EFFORT AND BUILDING UPON WHAT 9446 06:02:03,520 --> 06:02:04,880 CINNAMON SAID AND OBVIOUSLY WE 9447 06:02:04,880 --> 06:02:06,880 ARE INTERESTED REALLY IN THE 9448 06:02:06,880 --> 06:02:09,080 OUTCOMES OF THIS PROJECT AND IN 9449 06:02:09,080 --> 06:02:12,080 LEARNING, YOU KNOW, HOW TO USE 9450 06:02:12,080 --> 06:02:13,720 ENGAGEMENT TO INFORM THESE KINDS 9451 06:02:13,720 --> 06:02:16,560 OF EFFORTS AND SPECIFICALLY HERE 9452 06:02:16,560 --> 06:02:18,120 FOR THE DATA SCIENCE CHARGE THAT 9453 06:02:18,120 --> 06:02:19,880 WAS GIVEN TO THE COMMITTEE. 9454 06:02:19,880 --> 06:02:21,800 AS I MENTIONED, IN THE BEGINNING 9455 06:02:21,800 --> 06:02:23,640 OF THE SESSION, WE REALLY ARE 9456 06:02:23,640 --> 06:02:26,400 TRYING TO USE THIS AS A WAY OF 9457 06:02:26,400 --> 06:02:29,320 THINKING ABOUT ENGAGEMENT WRIT 9458 06:02:29,320 --> 06:02:30,800 LARGE AND HOW WE DEVELOP POLICY 9459 06:02:30,800 --> 06:02:33,440 AND TO USE THIS AS SORT OF A, 9460 06:02:33,440 --> 06:02:35,640 YOU KNOW, A -- I DON'T WANT TO 9461 06:02:35,640 --> 06:02:38,360 SAY A PILOT. YOU KNOW, AS A 9462 06:02:38,360 --> 06:02:39,560 LEARNING EXPERIENCE FOR US AND 9463 06:02:39,560 --> 06:02:41,520 THINKING ABOUT HOW TO DO THIS IN 9464 06:02:41,520 --> 06:02:43,440 NEW WAY AND IN DEVELOPING POLICY 9465 06:02:43,440 --> 06:02:45,720 AT NIH. SO, I WANTED TO TELL 9466 06:02:45,720 --> 06:02:47,320 YOU ALL THAT WE ARE REALLY 9467 06:02:47,320 --> 06:02:48,800 COMMITTED TO THAT. WE ARE ALSO 9468 06:02:48,800 --> 06:02:51,200 REALLY COMMITTED TO -- WE SAID 9469 06:02:51,200 --> 06:02:53,160 AT THE BEGINNING THAT WE ARE 9470 06:02:53,160 --> 06:02:55,160 FORMING THESE RELATIONSHIPS WITH 9471 06:02:55,160 --> 06:02:57,000 COMMUNITIES AND THROUGH THIS 9472 06:02:57,000 --> 06:02:57,480 PROJECT. 9473 06:02:57,480 --> 06:03:00,000 WE REALLY WANT. WE REALLY ARE 9474 06:03:00,000 --> 06:03:01,600 INTERESTED IN WORKING WITH PYXIS 9475 06:03:01,600 --> 06:03:04,280 AND HEARING WHAT WE DO FROM THE 9476 06:03:04,280 --> 06:03:06,240 COMMITTEE ABOUT WAYS TO, YOU 9477 06:03:06,240 --> 06:03:08,200 KNOW, BUILD UPON, YOU KNOW, THIS 9478 06:03:08,200 --> 06:03:10,920 -- THIS -- YOU KNOW, BUILD UPON 9479 06:03:10,920 --> 06:03:13,160 THIS TRUST AND SORT OF PAY IT 9480 06:03:13,160 --> 06:03:13,880 BACK; RIGHT? 9481 06:03:13,880 --> 06:03:15,960 IN TERMS OF HOW TO CONTINUE TO 9482 06:03:15,960 --> 06:03:17,600 ENGAGE WITH THE COMMUNITIES AND 9483 06:03:17,600 --> 06:03:19,000 GROUPS THAT HAVE BEEN PART OF 9484 06:03:19,000 --> 06:03:21,200 THIS PARTICULAR ENGAGEMENT AS 9485 06:03:21,200 --> 06:03:21,680 WELL. 9486 06:03:21,680 --> 06:03:24,240 SO, SO THOSE ARE THINGS WE ARE 9487 06:03:24,240 --> 06:03:25,720 WORKING TOWARDS AND, AGAIN, I 9488 06:03:25,720 --> 06:03:27,880 WANT TO JUST TELL YOU ALL HOW 9489 06:03:27,880 --> 06:03:30,120 MUCH WE HAVE ENJOYED ENGAGING 9490 06:03:30,120 --> 06:03:31,840 WITH ALL OF YOU HERE TODAY AS 9491 06:03:31,840 --> 06:03:33,680 WELL. YOU KNOW, LOOKING FORWARD 9492 06:03:33,680 --> 06:03:36,720 TO OUTPUT OF THE COMMITTEE'S 9493 06:03:36,720 --> 06:03:38,360 REPORT LATER THIS YEAR. SO, 9494 06:03:38,360 --> 06:03:41,680 THANK YOU, EVERYONE, FOR A 9495 06:03:41,680 --> 06:03:43,320 WONDERFUL WORKSHOP. THANK YOU 9496 06:03:43,320 --> 06:03:46,200 TO ALL OF THOSE WHO WATCHED 9497 06:03:46,200 --> 06:03:48,280 ONLINE. AND I THINK THAT IS A 9498 06:03:48,280 --> 06:03:49,280 WRAP! 9499 06:03:49,280 --> 06:03:52,520 SO, THANK YOU, EVERYBODY. 9500 06:03:52,520 --> 06:04:02,920 >>[APPLAUSE] WRR REQUES