1 00:00:05,960 --> 00:00:07,960 WELCOME TO DAY 2 OF THE NINDS 2 00:00:07,960 --> 00:00:08,520 NON-PROFIT FORUM. 3 00:00:08,520 --> 00:00:11,280 I WANT TO THANK ALL SO MUCH FOR 4 00:00:11,280 --> 00:00:14,680 COMING TODAY AND FOR 5 00:00:14,680 --> 00:00:15,320 PARTICIPATING IN YESTERDAY'S 6 00:00:15,320 --> 00:00:17,160 FABULOUS SESSION. 7 00:00:17,160 --> 00:00:19,560 IT'S BEEN REALLY AMAZING TO ONCE 8 00:00:19,560 --> 00:00:21,760 AGAIN GATHER IN PERSON AND 9 00:00:21,760 --> 00:00:22,160 VIRTUALLY. 10 00:00:22,160 --> 00:00:25,040 AND I AM DELIGHTED TO SHARE OUR 11 00:00:25,040 --> 00:00:27,360 ATTENDANCE NUMBERS. 12 00:00:27,360 --> 00:00:32,280 WE HAD ABOUT 340 PEOPLE TOTAL 13 00:00:32,280 --> 00:00:32,640 PARTICIPATING. 14 00:00:32,640 --> 00:00:35,360 WITH ALMOST 50/50, OVER 150 IN 15 00:00:35,360 --> 00:00:38,440 PERSON AT DIFFERENT TIMES DURING 16 00:00:38,440 --> 00:00:41,680 THE DAY YESTERDAY, AND A LITTLE 17 00:00:41,680 --> 00:00:44,320 BIT OVER 180 PARTICIPATING 18 00:00:44,320 --> 00:00:44,560 ONLINE. 19 00:00:44,560 --> 00:00:46,200 SO I THINK THAT'S GREAT. 20 00:00:46,200 --> 00:00:48,800 IT ALLOWS US TO RECONNECT IN 21 00:00:48,800 --> 00:00:52,120 PERSON WHILE STILL BEING ABLE TO 22 00:00:52,120 --> 00:00:53,840 INCLUDE PEOPLE FOR WHOM PERHAPS 23 00:00:53,840 --> 00:00:55,040 TRAVEL IS LESS CONVENIENT OR 24 00:00:55,040 --> 00:00:55,720 LESS POSSIBLE. 25 00:00:55,720 --> 00:01:00,760 AND WE ALL GET TO BE PART OF THE 26 00:01:00,760 --> 00:01:01,520 SAME REALLY IMPORTANT 27 00:01:01,520 --> 00:01:02,200 CONVERSATIONS. 28 00:01:02,200 --> 00:01:09,280 WITH THAT I'M GOING TO BRIEFLY 29 00:01:09,280 --> 00:01:11,920 RECAP DAY 1, JUST AT A REALLY 30 00:01:11,920 --> 00:01:12,880 HIGH LEVEL. 31 00:01:12,880 --> 00:01:20,680 I WANT TO ACKNOWLEDGE THE 32 00:01:20,680 --> 00:01:22,520 INCREDIBLE KEYNOTE FROM TERRY 33 00:01:22,520 --> 00:01:22,840 PIROVOLAKIS. 34 00:01:22,840 --> 00:01:28,760 I PRACTICED THAT. 35 00:01:28,760 --> 00:01:30,080 AND HIS INCREDIBLE STORY OF THE 36 00:01:30,080 --> 00:01:34,040 WAY THAT HE AND HIS FAMILY WERE 37 00:01:34,040 --> 00:01:39,000 ABLE TO REALLY CATALYZE A 38 00:01:39,000 --> 00:01:40,640 RESEARCH COMMUNITY AND COMMUNITY 39 00:01:40,640 --> 00:01:43,240 OF DONORS AND FRIENDS AND LOVED 40 00:01:43,240 --> 00:01:47,840 ONES AND EXPAND THAT AND REALLY 41 00:01:47,840 --> 00:01:49,840 MOVE SCIENCE FORWARD, MOVE 42 00:01:49,840 --> 00:01:50,360 TREATMENT FORWARD. 43 00:01:50,360 --> 00:01:56,080 AND I THINK THAT THAT ABILITY OF 44 00:01:56,080 --> 00:02:00,440 A COMMITTED PERSON, FAMILY, 45 00:02:00,440 --> 00:02:01,560 CAREGIVER, TO CATALYZE RESEARCH 46 00:02:01,560 --> 00:02:02,840 PROGRESS WE HEARD AGAIN AND 47 00:02:02,840 --> 00:02:04,040 AGAIN YESTERDAY. 48 00:02:04,040 --> 00:02:06,440 AND IT WAS INCREDIBLY INSPIRING 49 00:02:06,440 --> 00:02:08,760 AND IT REMINDED ME OF THE QUOTE 50 00:02:08,760 --> 00:02:09,560 ABOUT NEVER UNDERESTIMATING THE 51 00:02:09,560 --> 00:02:10,960 POWER OF A SMALL GROUP OF 52 00:02:10,960 --> 00:02:13,440 COMMITTED PEOPLE TO CHANGE THE 53 00:02:13,440 --> 00:02:13,840 WORLD. 54 00:02:13,840 --> 00:02:17,200 INDEED, IT IS THE ONLY THING 55 00:02:17,200 --> 00:02:18,400 THAT EVER HAS. 56 00:02:18,400 --> 00:02:22,600 I JUST REALLY LEFT YESTERDAY'S 57 00:02:22,600 --> 00:02:25,240 SESSION WITH THE WORDS OF PENNY 58 00:02:25,240 --> 00:02:27,400 DAKS IN MY HEAD, THE HOPE, WE 59 00:02:27,400 --> 00:02:29,280 HAVE THESE TREATMENTS FOR RARE 60 00:02:29,280 --> 00:02:30,920 AND ULTRA RARE CONDITIONS, AND 61 00:02:30,920 --> 00:02:35,520 THAT REALLY IS A RESULT OF THE 62 00:02:35,520 --> 00:02:40,600 RESEARCH COMMUNITY, THE 63 00:02:40,600 --> 00:02:42,000 PARTNERSHIP DEVELOPED, AMONG 64 00:02:42,000 --> 00:02:42,600 RESEARCHERS THEMSELVES, 65 00:02:42,600 --> 00:02:44,080 WILLINGNESS TO COLLABORATE WITH 66 00:02:44,080 --> 00:02:46,400 EACH OTHER, WITH INDUSTRY, WITH 67 00:02:46,400 --> 00:02:50,760 GOVERNMENT, WITH NIH AND FDA AND 68 00:02:50,760 --> 00:02:51,480 OTHERS. 69 00:02:51,480 --> 00:02:52,960 FOR THE NON-PROFITS TO PARTNER, 70 00:02:52,960 --> 00:02:55,680 WE HAD A SESSION ABOUT HOW 71 00:02:55,680 --> 00:02:56,480 NON-PROFITS FUND RESEARCH AND 72 00:02:56,480 --> 00:02:58,120 ONE OF THE KEY HIGHLIGHTS THERE 73 00:02:58,120 --> 00:03:00,080 WAS THE IMPORTANCE OF 74 00:03:00,080 --> 00:03:02,600 PARTNERSHIPS AND COLLABORATIONS 75 00:03:02,600 --> 00:03:03,480 THERE TOO. 76 00:03:03,480 --> 00:03:05,120 I WANT TO ACKNOWLEDGE SOME OF 77 00:03:05,120 --> 00:03:07,520 THE CHALLENGES THAT WERE RAISED 78 00:03:07,520 --> 00:03:10,080 IN YESTERDAY'S SESSION. 79 00:03:10,080 --> 00:03:13,560 IT IS CLEAR THAT WHILE A SMALL 80 00:03:13,560 --> 00:03:17,400 GROUP OF COMMITTED PEOPLE CAN DO 81 00:03:17,400 --> 00:03:19,360 TRULY REMARKABLE THINGS, IT'S 82 00:03:19,360 --> 00:03:22,000 ALSO CLEAR IT COMES AT A GREAT 83 00:03:22,000 --> 00:03:22,440 COST. 84 00:03:22,440 --> 00:03:24,920 IT COMES AT GREAT PERSONAL COST, 85 00:03:24,920 --> 00:03:26,480 GREAT FINANCIAL COST, COMES AT A 86 00:03:26,480 --> 00:03:30,520 GREAT COST IN TERMS OF TIME AND 87 00:03:30,520 --> 00:03:34,320 SOMETIMES ALTHOUGH THE FIELD IS 88 00:03:34,320 --> 00:03:36,200 MOVED FORWARD, THEIR OWN FAMILY 89 00:03:36,200 --> 00:03:37,400 DOES NOT DIRECTLY BENEFIT FROM 90 00:03:37,400 --> 00:03:39,160 THAT, AND THAT IS ALSO A COST 91 00:03:39,160 --> 00:03:43,200 THAT WE HAVE TO ACKNOWLEDGE. 92 00:03:43,200 --> 00:03:45,600 AND I ALSO WANTED TO REALLY 93 00:03:45,600 --> 00:03:47,040 ACKNOWLEDGE THE ISSUES BROUGHT 94 00:03:47,040 --> 00:03:49,760 UP ABOUT THINKING ABOUT EQUITY 95 00:03:49,760 --> 00:03:52,200 TO ACCESS, AS THIS HOPE IS 96 00:03:52,200 --> 00:03:54,480 SWELLING AND TREATMENTS ARE 97 00:03:54,480 --> 00:03:55,320 ACTUALLY BEGINNING TO EMERGE, I 98 00:03:55,320 --> 00:03:57,520 THINK THAT IT IS WORTH THINKING 99 00:03:57,520 --> 00:04:00,680 ABOUT HOW TO MAKE SURE THAT 100 00:04:00,680 --> 00:04:02,000 THESE TREATMENTS CAN BE 101 00:04:02,000 --> 00:04:02,800 AVAILABLE MORE WIDELY. 102 00:04:02,800 --> 00:04:05,440 THAT'S A LITTLE BIT OUT OF SCOPE 103 00:04:05,440 --> 00:04:07,360 OF NIH AND THOSE GATHERED HERE 104 00:04:07,360 --> 00:04:08,800 TODAY, BUT I THINK IT'S 105 00:04:08,800 --> 00:04:14,960 SOMETHING THAT WE ALL NEED TO 106 00:04:14,960 --> 00:04:15,720 STAY COMMITTED TO. 107 00:04:15,720 --> 00:04:17,800 AS WE LOOK AHEAD TO TODAY'S 108 00:04:17,800 --> 00:04:22,400 DISCUSSIONS WE'RE GOING TO HAVE 109 00:04:22,400 --> 00:04:23,720 A FABULOUS PANEL DISCUSSION FOR 110 00:04:23,720 --> 00:04:25,680 PATIENT DATA AND FOCUSED ON 111 00:04:25,680 --> 00:04:27,040 COMMUNITY ENGAGEMENT STRATEGIES 112 00:04:27,040 --> 00:04:27,880 TO BOOST DIVERSITY ENROLLMENT IN 113 00:04:27,880 --> 00:04:30,840 CLINICAL TRIALS FROM A PHARMA 114 00:04:30,840 --> 00:04:31,480 INDUSTRY PERSPECTIVE. 115 00:04:31,480 --> 00:04:34,040 I'M VERY EXCITE AND LOOKING 116 00:04:34,040 --> 00:04:35,760 FORWARD TO THAT. 117 00:04:35,760 --> 00:04:39,920 QUICKLY, BEFORE I INTRODUCE THE 118 00:04:39,920 --> 00:04:42,120 FIRST PANEL, I DID WANT TO SHARE 119 00:04:42,120 --> 00:04:44,960 WITH THIS GROUP IN PARTICULAR 120 00:04:44,960 --> 00:04:48,280 STEPS THAT NIH, NINDS IN 121 00:04:48,280 --> 00:04:50,360 PARTICULAR, HAVE BEEN TAKING TO 122 00:04:50,360 --> 00:04:56,480 REALLY LEAN IN TO PARTNERING 123 00:04:56,480 --> 00:04:57,360 WITH PEOPLE WITH LIVED 124 00:04:57,360 --> 00:05:02,040 EXPERIENCE OF DECEMBER. 125 00:05:02,040 --> 00:05:03,160 DISEASE. 126 00:05:03,160 --> 00:05:06,560 WE HIGHLIGHTED IMPORTANCE OF 127 00:05:06,560 --> 00:05:08,520 INCREASING PATIENT ENGAGEMENT IN 128 00:05:08,520 --> 00:05:10,080 NINDS RESEARCH TO BETTER ADDRESS 129 00:05:10,080 --> 00:05:12,800 PRIORITIES OF PATIENTS AND 130 00:05:12,800 --> 00:05:14,880 FAMILIES AND IMPROVE EFFICIENCY 131 00:05:14,880 --> 00:05:16,080 AND EFFECTIVENESS OF RESEARCH. 132 00:05:16,080 --> 00:05:18,360 I WANT TO EMPHASIZE NOT ONLY 133 00:05:18,360 --> 00:05:19,920 DOES THIS FEEL LIKE THE RIGHT 134 00:05:19,920 --> 00:05:21,760 THING TO DO; THE MAKES THE 135 00:05:21,760 --> 00:05:23,280 RESEARCH BETTER, MAKES IT MOVE 136 00:05:23,280 --> 00:05:23,640 FASTER. 137 00:05:23,640 --> 00:05:26,440 I THINK WE SAW THAT AGAIN AND 138 00:05:26,440 --> 00:05:30,800 AGAIN YESTERDAY, IN A WAY THAT 139 00:05:30,800 --> 00:05:33,120 REALLY BRINGS A LOT OF HOPE 140 00:05:33,120 --> 00:05:35,280 LOOKING FORWARD AS NINDS IS 141 00:05:35,280 --> 00:05:39,280 LOOKING FOR WAYS TO DO THIS MORE 142 00:05:39,280 --> 00:05:40,360 AND MORE EFFECTIVELY. 143 00:05:40,360 --> 00:05:42,880 A FEW EXAMPLES OVER THE LAST ONE 144 00:05:42,880 --> 00:05:45,720 TO TWO YEARS, STEPS WE HAVE 145 00:05:45,720 --> 00:05:49,120 TAKEN TO REALLY LEAN IN TO THIS 146 00:05:49,120 --> 00:05:50,760 ENGAGEMENT, WE'RE ENGAGING WITH 147 00:05:50,760 --> 00:05:52,280 PEOPLE WITH LIVED EXPERIENCE 148 00:05:52,280 --> 00:05:52,960 MORE INTENTIONALLY AROUND 149 00:05:52,960 --> 00:05:55,760 SETTING RESEARCH PRIORITIES FOR 150 00:05:55,760 --> 00:05:57,200 THE SCIENTIFIC COMMUNITIES, 151 00:05:57,200 --> 00:05:59,280 SETTING SCIENTIFIC PRIORITIES 152 00:05:59,280 --> 00:06:01,800 FOR ALS, WE WORKED CLOSELY WITH 153 00:06:01,800 --> 00:06:03,440 PEOPLE WITH LIVED EXPERIENCE, ON 154 00:06:03,440 --> 00:06:05,320 OUR STEERING COMMITTEE, ON ALL 155 00:06:05,320 --> 00:06:07,520 FIVE OF THE WORKING GROUPS. 156 00:06:07,520 --> 00:06:08,400 THERE WERE NUMEROUS 157 00:06:08,400 --> 00:06:12,000 OPPORTUNITIES FOR THE 158 00:06:12,000 --> 00:06:13,640 INCORPORATION OF PUBLIC INPUT 159 00:06:13,640 --> 00:06:15,840 AND INCLUSION OF THESE 160 00:06:15,840 --> 00:06:17,040 INDIVIDUALS IN OUR DISCUSSIONS 161 00:06:17,040 --> 00:06:18,920 DEEPENED THEM AND YIELDED A 162 00:06:18,920 --> 00:06:20,000 RICHER SET OF SCIENTIFIC 163 00:06:20,000 --> 00:06:20,320 PRIORITIES. 164 00:06:20,320 --> 00:06:22,720 I WANT TO NOTE THAT THERE WAS AN 165 00:06:22,720 --> 00:06:25,360 INTENTIONAL EFFORT FOR THE PLAN 166 00:06:25,360 --> 00:06:27,880 THAT EMERGED TO INCLUDE PLAIN 167 00:06:27,880 --> 00:06:28,480 LANGUAGE EXPLANATIONS OF 168 00:06:28,480 --> 00:06:29,400 SCIENTIFIC PRIORITIES WHICH I 169 00:06:29,400 --> 00:06:32,640 THINK IS REALLY AN IMPORTANT 170 00:06:32,640 --> 00:06:37,840 PIECE OF SHARING WITH ALL OF OUR 171 00:06:37,840 --> 00:06:38,840 STAKEHOLDERS THE IMPORTANCE OF 172 00:06:38,840 --> 00:06:43,720 RESEARCH PRIORITIES AND HOW THEY 173 00:06:43,720 --> 00:06:43,960 ARE SET. 174 00:06:43,960 --> 00:06:48,800 LOOKING AHEAD, OUR ME/CFS ROAD 175 00:06:48,800 --> 00:06:50,080 MAP INCLUDES PEOPLE WITH LIVED 176 00:06:50,080 --> 00:06:52,120 EXPERIENCE AT THE PLANNING 177 00:06:52,120 --> 00:06:54,040 PROCESS, I'M EXCITED TO SEE WHAT 178 00:06:54,040 --> 00:06:55,760 THE PROCESS YIELDS. 179 00:06:55,760 --> 00:06:57,320 WE'RE ENGAGING WITH PEOPLE WITH 180 00:06:57,320 --> 00:06:58,200 LIVED EXPERIENCE TO INFORM 181 00:06:58,200 --> 00:07:02,160 RESEARCH IN THE FIELD, HAD A 182 00:07:02,160 --> 00:07:04,440 SERIES OF ROUNDTABLES AROUND 183 00:07:04,440 --> 00:07:06,960 PARKINSON'S DISEASE AND 184 00:07:06,960 --> 00:07:09,680 DEVELOPING THERAPEUTICS AND A 185 00:07:09,680 --> 00:07:11,440 BRAIN INITIATIVE GROUP LOOKING 186 00:07:11,440 --> 00:07:12,400 AT TRIAL RESPONSIBILITIES, 187 00:07:12,400 --> 00:07:17,240 SHARING INDIVIDUAL LEVEL HUMAN 188 00:07:17,240 --> 00:07:19,960 BRAIN DATA, AND THE DISCUSSIONS 189 00:07:19,960 --> 00:07:21,840 INCLUDED PEOPLE WITH LIVED 190 00:07:21,840 --> 00:07:23,120 EXPERIENCE SO THEIR PERSPECTIVES 191 00:07:23,120 --> 00:07:25,680 WERE PART OF THE CONVERSATION AT 192 00:07:25,680 --> 00:07:26,320 EVERY POINT. 193 00:07:26,320 --> 00:07:29,160 THEY DIDN'T JUST PROVIDE A 194 00:07:29,160 --> 00:07:30,560 REACTION AT THE END. 195 00:07:30,560 --> 00:07:34,520 WE'RE ALSO LOOKING FOR WAYS TO 196 00:07:34,520 --> 00:07:35,760 ENCOURAGE ENGAGEMENT WITH LIVED 197 00:07:35,760 --> 00:07:38,360 EXPERIENCE ACROSS NIH AND 198 00:07:38,360 --> 00:07:38,600 BEYOND. 199 00:07:38,600 --> 00:07:40,120 WE'VE BEEN SHARING STRATEGIES 200 00:07:40,120 --> 00:07:43,080 AND LEARNING FROM OTHERS AT A 201 00:07:43,080 --> 00:07:44,480 RECENT INTERAGENCY COLLABORATIVE 202 00:07:44,480 --> 00:07:46,040 TO ACCELERATE RESEARCH ON 203 00:07:46,040 --> 00:07:47,800 EPILEPSY MEETING, WE HAD A 204 00:07:47,800 --> 00:07:48,800 SESSION ON STRATEGIES AROUND 205 00:07:48,800 --> 00:07:51,200 ENGAGING WITH PEOPLE WITH LIVED 206 00:07:51,200 --> 00:07:53,120 EXPERIENCE AT THE RECENT BRAIN 207 00:07:53,120 --> 00:07:54,080 INITIATIVE CONFERENCE, AND WE 208 00:07:54,080 --> 00:07:56,720 HELD A WORKSHOP AT THE NATIONAL 209 00:07:56,720 --> 00:07:58,080 SCIENCE ASSOCIATION. 210 00:07:58,080 --> 00:07:59,800 I JUST WANT TO ACKNOWLEDGE THE 211 00:07:59,800 --> 00:08:01,360 ONGOING WORK THAT HAS BEEN GOING 212 00:08:01,360 --> 00:08:05,080 ON IN THE HELPING TO END 213 00:08:05,080 --> 00:08:06,880 ADDICTION LONG-TERM INITIATIVE, 214 00:08:06,880 --> 00:08:09,440 NIH HEAL INITIATIVE, WHICH IS 215 00:08:09,440 --> 00:08:12,760 FOCUSED ON ENDING THE OPIOID USE 216 00:08:12,760 --> 00:08:15,920 DISORDER EPIDEMIC AND DEVELOPING 217 00:08:15,920 --> 00:08:19,760 MORE EFFECTIVE AND NON-ADDICTIVE 218 00:08:19,760 --> 00:08:20,840 PAIN STRATEGIES AND THERAPIES. 219 00:08:20,840 --> 00:08:21,920 THERE ARE EFFORTS TO ENGAGE 220 00:08:21,920 --> 00:08:24,800 PEOPLE WITH LIVED EXPERIENCE IN 221 00:08:24,800 --> 00:08:26,640 THE ADVISORY STRUCTURE THROUGH 222 00:08:26,640 --> 00:08:27,680 "HEAL" COMMUNITY PARTNERS 223 00:08:27,680 --> 00:08:29,040 COMMITTEE AND OPPORTUNITIES, FOR 224 00:08:29,040 --> 00:08:31,080 EXAMPLE, FOR FUNDING SUPPLEMENTS 225 00:08:31,080 --> 00:08:32,520 THROUGH "HEAL" TO BRING IN 226 00:08:32,520 --> 00:08:34,840 PEOPLE WITH LIVED EXPERIENCE AND 227 00:08:34,840 --> 00:08:36,040 ALSO TO DIVERSIFY PARTICIPATION 228 00:08:36,040 --> 00:08:38,560 IN A NUMBER OF DIFFERENT 229 00:08:38,560 --> 00:08:39,200 "HEAL"-RELATED ACTIVITIES, JUST 230 00:08:39,200 --> 00:08:40,400 A FEW EXAMPLES OF THE WORK 231 00:08:40,400 --> 00:08:44,800 "HEAL" HAS DONE IN THIS SPACE. 232 00:08:44,800 --> 00:08:48,760 SO, A LOT OF OUR EFFORTS ARE THE 233 00:08:48,760 --> 00:08:50,040 RESULTING THE REALLY PASSIONATE 234 00:08:50,040 --> 00:08:55,200 ENGAGEMENT OF STAFF AT ALL 235 00:08:55,200 --> 00:08:56,640 LEVELS ACROSS NINDS. 236 00:08:56,640 --> 00:08:58,680 PEOPLE WORK REALLY, REALLY HARD 237 00:08:58,680 --> 00:09:01,520 AT THIS INSTITUTE TO TRY TO MAKE 238 00:09:01,520 --> 00:09:04,360 A DIFFERENCE FOR THE PATIENTS. 239 00:09:04,360 --> 00:09:06,040 AND I'M JUST REALLY EXCITED TO 240 00:09:06,040 --> 00:09:08,320 SHARE THAT WE WERE ABLE TO 241 00:09:08,320 --> 00:09:15,960 RECRUIT A LITTLE OVER A YEAR AGO 242 00:09:15,960 --> 00:09:18,640 DR. REBEKAH CORLEW, SHE'S 243 00:09:18,640 --> 00:09:20,400 PARTNERING TO MOVE THESE 244 00:09:20,400 --> 00:09:22,000 TRAJECTORIES FORWARD. 245 00:09:22,000 --> 00:09:23,440 IF YOU HAVE SUGGESTIONS OR YOU 246 00:09:23,440 --> 00:09:26,840 WANT TO ENGAGE WITH HER TO FIND 247 00:09:26,840 --> 00:09:28,040 INFORMATION OUT, ACROSS THE 248 00:09:28,040 --> 00:09:30,040 INSTITUTE, PLEASE DO SO. 249 00:09:30,040 --> 00:09:32,080 AND FINALLY IT IS MY PRIVILEGE 250 00:09:32,080 --> 00:09:33,720 TO INTRODUCE OUR NEXT SESSION. 251 00:09:33,720 --> 00:09:36,080 SO, AGAIN, THIS IS A PANEL 252 00:09:36,080 --> 00:09:37,120 DISCUSSION ON PATIENT DATA. 253 00:09:37,120 --> 00:09:40,440 I WOULD LIKE TO INTRODUCE OUR 254 00:09:40,440 --> 00:09:41,840 MODERATOR, CHRISTINE VON 255 00:09:41,840 --> 00:09:42,120 RAESFELD. 256 00:09:42,120 --> 00:09:44,240 SHE'S FOUNDER AND CEO OF PEOPLE 257 00:09:44,240 --> 00:09:46,640 WITH EMPATHY, A PILLAR OF 258 00:09:46,640 --> 00:09:48,160 PATIENT ADVOCACY AND ALLYSHIP IN 259 00:09:48,160 --> 00:09:49,400 THE RARE AND CHRONIC DISEASE 260 00:09:49,400 --> 00:09:49,760 COMMUNITY. 261 00:09:49,760 --> 00:09:52,560 THROUGH THE LENS OF HER LIVED 262 00:09:52,560 --> 00:09:55,080 EXPERIENCE SHE HAS BECOME A 263 00:09:55,080 --> 00:09:56,720 CHAMPION FOR PATIENT VOICE, 264 00:09:56,720 --> 00:10:01,640 DIVERSITY, INCLUSION IN CLINICAL 265 00:10:01,640 --> 00:10:05,040 RESEARCH, EQUITABLE PATIENT 266 00:10:05,040 --> 00:10:07,880 PARTNERSHIP, BROUGHT A UNIQUE 267 00:10:07,880 --> 00:10:09,280 PERSPECTIVE RANGING FROM 268 00:10:09,280 --> 00:10:11,360 CLINICAL RECRUITMENT TO DATA, 269 00:10:11,360 --> 00:10:13,120 AND DIGITAL RIGHTS FROM A TRUE 270 00:10:13,120 --> 00:10:16,320 PATIENT PERSPECTIVE. 271 00:10:16,320 --> 00:10:17,320 SHE SERVED AS e-PATIENT 272 00:10:17,320 --> 00:10:18,560 SCHOLAR WITH THE "ALL OF US" 273 00:10:18,560 --> 00:10:20,560 PROGRAM AND EXPERT PANELIST WITH 274 00:10:20,560 --> 00:10:23,400 CENTERS FOR MEDICARE AND 275 00:10:23,400 --> 00:10:25,480 MEDICAID SERVICE, CMS, AMONG 276 00:10:25,480 --> 00:10:27,640 OTHER ROLES. 277 00:10:27,640 --> 00:10:30,640 WE'RE PRIVILEGED TO HAVE HER 278 00:10:30,640 --> 00:10:32,560 HERE TODAY. 279 00:10:32,560 --> 00:10:34,400 >>I'M GOING TO 280 00:10:34,400 --> 00:10:36,400 INTRODUCE -- WELL, NOT REALLY 281 00:10:36,400 --> 00:10:37,280 INTRODUCE MY PANELISTS BECAUSE I 282 00:10:37,280 --> 00:10:41,960 FIGURE YOU CAN LOOK US ALL UP ON 283 00:10:41,960 --> 00:10:43,600 LINKED IN, WE DON'T NEED TO GO 284 00:10:43,600 --> 00:10:45,480 INTO A HUGE -- SORRY. 285 00:10:45,480 --> 00:10:47,560 WE DON'T NEED TO GO INTO A HUGE 286 00:10:47,560 --> 00:10:48,880 DISCUSSION ON WHAT EVERYONE DOES 287 00:10:48,880 --> 00:10:51,160 BUT I WILL HAVE MY PANELISTS 288 00:10:51,160 --> 00:10:53,920 EACH INTRODUCE THEMSELVES WITH A 289 00:10:53,920 --> 00:10:54,160 QUESTION. 290 00:10:54,160 --> 00:10:56,400 AND SO I'M GOING TO -- DIANE, 291 00:10:56,400 --> 00:10:57,520 YOU'RE THERE ONLINE. 292 00:10:57,520 --> 00:10:58,960 WE'LL GO TO YOU FIRST. 293 00:10:58,960 --> 00:11:01,040 MY QUESTION THAT I WANT YOU GUYS 294 00:11:01,040 --> 00:11:03,120 TO ANSWER FOR OUR AUDIENCE IS 295 00:11:03,120 --> 00:11:06,280 HOW DO YOU BELIEVE RESPONSIBLE 296 00:11:06,280 --> 00:11:08,040 DATA SHAKER CAN POSITIVELY 297 00:11:08,040 --> 00:11:09,000 IMPACT HEALTH CARE RESEARCH, 298 00:11:09,000 --> 00:11:13,480 PATIENT CARE AND INNOVATION 299 00:11:13,480 --> 00:11:15,560 WHILE ENSURING PRIVACY AND 300 00:11:15,560 --> 00:11:16,800 OWNERSHIP RIGHTS ARE RESPECTED. 301 00:11:16,800 --> 00:11:18,360 SO, DIANE, DO YOU WANT TO GO 302 00:11:18,360 --> 00:11:18,560 FIRST? 303 00:11:18,560 --> 00:11:19,240 >>GREAT. 304 00:11:19,240 --> 00:11:19,960 THANK YOU. 305 00:11:19,960 --> 00:11:21,800 I'M SO HAPPY TO JOIN THIS 306 00:11:21,800 --> 00:11:24,000 ESTEEMED PANEL, SO SORRY I CAN'T 307 00:11:24,000 --> 00:11:25,440 BE THERE IN PERSON. 308 00:11:25,440 --> 00:11:27,520 I'M TRAINED AS A NEUROSCIENTIST 309 00:11:27,520 --> 00:11:29,720 FOR 30 YEARS, CRITICAL PATH 310 00:11:29,720 --> 00:11:30,480 INSTITUTE, THE QUESTION YOU POSE 311 00:11:30,480 --> 00:11:34,640 IS WHY I CAME TO THIS AMAZING 312 00:11:34,640 --> 00:11:35,080 ORGANIZATION. 313 00:11:35,080 --> 00:11:36,920 MY CAREER WAS IN LARGE 314 00:11:36,920 --> 00:11:38,000 PHARMACEUTICAL COMPANIES TRYING 315 00:11:38,000 --> 00:11:40,880 TO GET THERAPIES TO PATIENTS AND 316 00:11:40,880 --> 00:11:42,400 LOSING TWO FAMILIES WITH 317 00:11:42,400 --> 00:11:45,040 DISEASES I WORKED ON. 318 00:11:45,040 --> 00:11:47,880 THAT CRITICAL PATH INSTITUTE, 319 00:11:47,880 --> 00:11:49,280 COLLABORATIONS ACCELERATE DRUG 320 00:11:49,280 --> 00:11:51,400 DEVELOPMENT, ADVANCING BETTER 321 00:11:51,400 --> 00:11:55,000 TREATMENT WORLDWIDE. 322 00:11:55,000 --> 00:11:58,600 AND WHAT WE'VE DONE, WHAT IS SO 323 00:11:58,600 --> 00:12:00,480 REWARDING, IS TO -- THANKS TO 324 00:12:00,480 --> 00:12:02,520 GENEROUS FUNDING FROM FDA BRING 325 00:12:02,520 --> 00:12:04,640 DATA TOGETHER, PATIENT LEVEL 326 00:12:04,640 --> 00:12:06,040 DATA, FROM OBSERVATIONAL STUDIES 327 00:12:06,040 --> 00:12:08,360 AND CLINICAL TRIALS TO INFORM 328 00:12:08,360 --> 00:12:11,560 NEW TOOLS, THAT'S REALLY DRIVING 329 00:12:11,560 --> 00:12:12,760 CHANGE, HELPING TO EMPOWER THIS 330 00:12:12,760 --> 00:12:15,280 OF THE SUCCESS AND NEW APPROVAL 331 00:12:15,280 --> 00:12:17,040 FOR DRUG TREATMENTS NOW IN A 332 00:12:17,040 --> 00:12:18,720 VARIETY OF DISORDERS. 333 00:12:18,720 --> 00:12:19,720 >>HI, ALISA FINK, NATIONAL 334 00:12:19,720 --> 00:12:21,000 ORGANIZATION FOR RARE DISORDERS. 335 00:12:21,000 --> 00:12:23,400 I'M EXCITED TO BE HERE TODAY. 336 00:12:23,400 --> 00:12:25,480 TO ANSWER YOUR QUESTION, THE WAY 337 00:12:25,480 --> 00:12:27,360 THAT I THINK ABOUT IT IS THIS 338 00:12:27,360 --> 00:12:30,440 WORK THAT WE'RE ALL INVOLVED IN 339 00:12:30,440 --> 00:12:32,160 COLLECTIVELY IS BIG AND IT'S 340 00:12:32,160 --> 00:12:33,160 HARD. 341 00:12:33,160 --> 00:12:35,320 AND REALLY, WE NEED ALL OF US TO 342 00:12:35,320 --> 00:12:38,840 GET TO BE THINKING ABOUT IT 343 00:12:38,840 --> 00:12:40,800 COLLECTIVELY AND TOGETHER. 344 00:12:40,800 --> 00:12:43,440 DATA COLLECTION TAKES TIME, 345 00:12:43,440 --> 00:12:45,800 TAKES MONEY, TAKES RESOURCES, 346 00:12:45,800 --> 00:12:47,160 AND IT'S PRECIOUS. 347 00:12:47,160 --> 00:12:49,240 AND THE OPPORTUNITY THAT IT 348 00:12:49,240 --> 00:12:50,640 PROVIDES WILL BE STRENGTHENED 349 00:12:50,640 --> 00:12:52,640 AND BUILT UPON IF WE'RE ALL 350 00:12:52,640 --> 00:12:56,600 COMING AT THIS DATA WITH OUR 351 00:12:56,600 --> 00:12:58,080 UNIQUE EXPERIENCES, EXPERTISE, 352 00:12:58,080 --> 00:12:58,720 AND PERSPECTIVES, AND THOSE ARE 353 00:12:58,720 --> 00:13:00,280 THE THINGS THAT ARE GOING TO 354 00:13:00,280 --> 00:13:01,400 MAKE THIS DATA VALUABLE. 355 00:13:01,400 --> 00:13:03,560 WE'RE ALL GOING TO BRING 356 00:13:03,560 --> 00:13:05,520 SOMETHING DIFFERENT TO IT, AND 357 00:13:05,520 --> 00:13:08,480 HELP TO REALLY MAKE THAT DATA 358 00:13:08,480 --> 00:13:09,840 IMPACTFUL AND MEANINGFUL, 359 00:13:09,840 --> 00:13:12,240 WHETHER IT'S FOR RESEARCH, THE 360 00:13:12,240 --> 00:13:13,440 DRUG DEVELOPMENT PATHWAY, AND 361 00:13:13,440 --> 00:13:17,360 IMPROVING HEALTH CARE. 362 00:13:17,360 --> 00:13:18,360 >>WOW, IT'S GOING TO BE TOUGH 363 00:13:18,360 --> 00:13:22,760 TO ADD TO ANY OF THOSE COMMENTS. 364 00:13:22,760 --> 00:13:31,920 BUT MY NAME IS DAVE VOCCOLA, 365 00:13:31,920 --> 00:13:32,920 INTEGRATED HEALTH PRACTICES 366 00:13:32,920 --> 00:13:36,080 FOCUSES ON TECHNOLOGY AND DATA 367 00:13:36,080 --> 00:13:37,520 INITIATIVES FOR NON-PROFITS. 368 00:13:37,520 --> 00:13:41,120 I THINK THE ONLY WAY TO EVEN ADD 369 00:13:41,120 --> 00:13:43,000 TO WHAT MY COLLEAGUES HAVE 370 00:13:43,000 --> 00:13:47,160 ALREADY SAID IS THAT I SEE THE 371 00:13:47,160 --> 00:13:49,560 VALUE OF PATIENT DATA 372 00:13:49,560 --> 00:13:51,200 ESSENTIALLY EQUALING, IN SOME 373 00:13:51,200 --> 00:13:53,160 CASES ENHANCING, THE SCIENCE IN 374 00:13:53,160 --> 00:13:56,560 THE NEXT ERA OF DRUG DISCOVERY 375 00:13:56,560 --> 00:13:57,160 AND TREATMENT DISCOVERY, AND 376 00:13:57,160 --> 00:14:01,200 PRECISION MEDICINE. 377 00:14:01,200 --> 00:14:03,160 I'VE BEEN THINKING ABOUT THIS 378 00:14:03,160 --> 00:14:05,120 DATA, EVEN BEFORE I CO-FOUNDED A 379 00:14:05,120 --> 00:14:08,520 COMPANY THAT JUST BUILT PATIENT 380 00:14:08,520 --> 00:14:09,160 REGISTRIES FOR NON-PROFITS AND 381 00:14:09,160 --> 00:14:10,400 TRIED TO LEVEL THE PLAYING FIELD 382 00:14:10,400 --> 00:14:14,480 A BIT IN TERMS OF GETTING SOME 383 00:14:14,480 --> 00:14:16,440 DATA OUT OF THE RESEARCH SITES 384 00:14:16,440 --> 00:14:18,160 AND REALLY ENHANCE THAT PATIENT 385 00:14:18,160 --> 00:14:20,240 VOICE AND GET IT -- THAT'S WHAT 386 00:14:20,240 --> 00:14:22,000 ALL OF US HAVE IN COMMON ON THIS 387 00:14:22,000 --> 00:14:24,600 PANEL. 388 00:14:24,600 --> 00:14:26,720 BUT I THINK THE NEW TECHNOLOGIES 389 00:14:26,720 --> 00:14:28,560 AND NEW ABILITIES FOR PATIENTS 390 00:14:28,560 --> 00:14:29,880 TO FULLY ENGAGE AND FOR THEIR 391 00:14:29,880 --> 00:14:32,080 FAMILIES AND CAREGIVERS TO FULLY 392 00:14:32,080 --> 00:14:32,880 ENGAGE IN THE RESEARCH 393 00:14:32,880 --> 00:14:36,120 ENTERPRISE, THAT'S GOING TO BE 394 00:14:36,120 --> 00:14:37,400 THE DEFINING DIFFERENTIATOR 395 00:14:37,400 --> 00:14:38,880 BETWEEN THE LAST AND CURRENT 396 00:14:38,880 --> 00:14:43,240 GENERATION OF RESEARCH. 397 00:14:43,240 --> 00:14:43,360 398 00:14:43,360 --> 00:14:45,280 IT BEHOOVES ALL OF US TO 399 00:14:45,280 --> 00:14:46,640 IDENTIFY THE RIGHT PATHWAYS, 400 00:14:46,640 --> 00:14:48,800 WHETHER IT BE FUNDING OR 401 00:14:48,800 --> 00:14:50,320 PARTNERSHIP PATHWAY, TO ENSURE 402 00:14:50,320 --> 00:14:53,720 THAT THE MAIN SERVICE THAT 403 00:14:53,720 --> 00:14:55,160 NON-PROFITS ARE BRINGING ARE 404 00:14:55,160 --> 00:14:58,120 BRINGING TO THEIR COMMUNITIES, I 405 00:14:58,120 --> 00:14:58,920 HOPE THIS ISN'T TOO 406 00:14:58,920 --> 00:15:00,080 CONTROVERSIAL BUT I THINK 407 00:15:00,080 --> 00:15:01,160 NON-PROFITS AND PATIENT 408 00:15:01,160 --> 00:15:04,360 ORGANIZATIONS ARE BY FAR THE 409 00:15:04,360 --> 00:15:05,440 BEST STEWARDS FOR THAT 410 00:15:05,440 --> 00:15:06,320 PATIENT-LEVEL DATA THAT'S GOING 411 00:15:06,320 --> 00:15:10,480 TO BE GENERATE AND NEEDS TO BE 412 00:15:10,480 --> 00:15:11,440 CONSOLIDATED. 413 00:15:11,440 --> 00:15:14,320 CERTAINLY BETTER THAN MANY 414 00:15:14,320 --> 00:15:16,480 FOR-PROFITS AND NICHE 415 00:15:16,480 --> 00:15:17,000 INVESTMENTS. 416 00:15:17,000 --> 00:15:18,360 I DO GET EXCITED ABOUT THESE 417 00:15:18,360 --> 00:15:20,720 TYPES OF DISCUSSIONS. 418 00:15:20,720 --> 00:15:23,120 >>I'LL TELL YOU REALLY QUICK WHY I 419 00:15:23,120 --> 00:15:24,240 THINK DATA IS IMPORTANT AND 420 00:15:24,240 --> 00:15:25,840 WE'LL GO TO OUR QUESTIONS. 421 00:15:25,840 --> 00:15:27,280 WE'LL HAVE THIS AS A 422 00:15:27,280 --> 00:15:28,240 CONVERSATIONAL STYLE. 423 00:15:28,240 --> 00:15:30,200 WE DON'T WANT TO FOCUS ON ONE 424 00:15:30,200 --> 00:15:30,800 ORGANIZATION. 425 00:15:30,800 --> 00:15:32,440 WE'VE GOT THREE GREAT 426 00:15:32,440 --> 00:15:33,440 ORGANIZATIONS HERE WHO KNOW WHAT 427 00:15:33,440 --> 00:15:35,640 THEY ARE DOING AND WHO CAN OFFER 428 00:15:35,640 --> 00:15:38,240 ADVICE TO THOSE OF YOU OUT 429 00:15:38,240 --> 00:15:38,640 THERE. 430 00:15:38,640 --> 00:15:41,280 FOR ME, I'M A PATIENT, ON 431 00:15:41,280 --> 00:15:43,040 MEDICARE RIGHT NOW. 432 00:15:43,040 --> 00:15:45,320 I'VE BEEN -- I'M SORRY, 20 YEARS 433 00:15:45,320 --> 00:15:48,080 ON MEDICARE, AND I'M UNDIAGNOSED 434 00:15:48,080 --> 00:15:48,720 STILL. 435 00:15:48,720 --> 00:15:50,800 MULTIPLE RARE DISEASE AND 436 00:15:50,800 --> 00:15:51,120 AUTOIMMUNE. 437 00:15:51,120 --> 00:15:54,560 MY DATA HAS BECOME EXTREMELY 438 00:15:54,560 --> 00:15:57,200 IMPORTANT IN TRYING TO FIND MY 439 00:15:57,200 --> 00:15:58,440 UNDERLYING CONDITION. 440 00:15:58,440 --> 00:16:00,360 IN THE NEW DIGITAL AGE THAT 441 00:16:00,360 --> 00:16:02,960 WE'RE COMING UPON, I SEE A GREAT 442 00:16:02,960 --> 00:16:05,360 NEED FOR PATIENTS TO UNDERSTAND 443 00:16:05,360 --> 00:16:07,320 DATA, HOW IT'S COLLECTED, AND 444 00:16:07,320 --> 00:16:09,640 WHY IT'S VALUABLE TO REALLY TAKE 445 00:16:09,640 --> 00:16:10,520 ADVANTAGE OF THAT AND BENEFIT 446 00:16:10,520 --> 00:16:13,040 OUR COMMUNITIES. 447 00:16:13,040 --> 00:16:15,320 SO I'M GOING TO START WITH SOME 448 00:16:15,320 --> 00:16:15,600 QUESTIONS. 449 00:16:15,600 --> 00:16:17,440 OUR FIRST QUESTION HERE IS, WE 450 00:16:17,440 --> 00:16:20,120 REALLY JUST WANT TO KIND OF 451 00:16:20,120 --> 00:16:22,880 DEFINE PATIENT DATA FOR YOU 452 00:16:22,880 --> 00:16:26,480 BECAUSE IT IS A VAST AMOUNT OF 453 00:16:26,480 --> 00:16:27,760 THINGS FROM WEARABLE DEVICES, 454 00:16:27,760 --> 00:16:29,760 WHAT'S THE DIFFERENCE BETWEEN 455 00:16:29,760 --> 00:16:33,920 PATIENT DATA AND EVEN AGGREGATE 456 00:16:33,920 --> 00:16:34,160 DATA. 457 00:16:34,160 --> 00:16:35,480 SO, DIANE, YOU'RE ON OUR SCREEN 458 00:16:35,480 --> 00:16:36,920 SO I'LL GO TO YOU FIRST. 459 00:16:36,920 --> 00:16:40,280 I DON'T WANT TO DO THIS 460 00:16:40,280 --> 00:16:41,280 WEIRD-LOOKING BACK AND FORTH. 461 00:16:41,280 --> 00:16:43,040 >>YES, THANK YOU SO MUCH FOR 462 00:16:43,040 --> 00:16:44,440 THAT QUESTION. 463 00:16:44,440 --> 00:16:45,280 IT'S SO TIMELY. 464 00:16:45,280 --> 00:16:48,680 WHAT WE'VE DONE AT CRITICAL PATH 465 00:16:48,680 --> 00:16:52,520 INSTITUTE WITH GENEROUS FUNDING 466 00:16:52,520 --> 00:16:54,840 FROM THE FDA, BRING TOGETHER 467 00:16:54,840 --> 00:16:55,520 DATA FROM OBSERVATIONAL STUDIES 468 00:16:55,520 --> 00:16:57,240 AND CLINICAL TRIALS, MANY HAVE 469 00:16:57,240 --> 00:16:58,680 FAILED IN THE PAST. 470 00:16:58,680 --> 00:17:00,200 SO, FOR EXAMPLE, THE CONSORTIA 471 00:17:00,200 --> 00:17:05,560 THAT I CURRENTLY LEAD NOW, 472 00:17:05,560 --> 00:17:06,200 PARKINSON'S CONSORTIA BROUGHT 473 00:17:06,200 --> 00:17:06,960 TOGETHER CLINICAL TRIAL DATA 474 00:17:06,960 --> 00:17:08,320 FROM 18 TRIALS AND THE TOTAL 475 00:17:08,320 --> 00:17:13,880 NUMBER OF STUDIES THAT WE HAVE 476 00:17:13,880 --> 00:17:14,840 IS -- TOTALS OVER 13,000 477 00:17:14,840 --> 00:17:15,160 INDIVIDUALS. 478 00:17:15,160 --> 00:17:17,520 THIS DISEASE WITH SUCH AN 479 00:17:17,520 --> 00:17:18,920 EXCITING PLETHORA OF NOVEL 480 00:17:18,920 --> 00:17:19,800 TARGETS COMING FORWARD WE NEED 481 00:17:19,800 --> 00:17:21,840 TO UNDERSTAND THIS DISEASE IN 482 00:17:21,840 --> 00:17:24,280 NEW WAYS, THANKS TO THE TYPE OF 483 00:17:24,280 --> 00:17:26,360 PATIENT DATA THAT'S NEEDED FOR 484 00:17:26,360 --> 00:17:27,000 REGULATORY SUCCESS. 485 00:17:27,000 --> 00:17:29,520 AND WHEN YOU THINK ABOUT 486 00:17:29,520 --> 00:17:34,680 AGGREGATE DATA, IT'S INFORMATIVE 487 00:17:34,680 --> 00:17:40,160 TO LEARN, WE WANT TO LOOK AT 488 00:17:40,160 --> 00:17:41,240 PATIENT-LEVEL DISEASE. 489 00:17:41,240 --> 00:17:43,600 WE'RE FORTUNATE TO HAVE STRONG 490 00:17:43,600 --> 00:17:44,280 PARTNERSHIPS WITH NINDS, THE 491 00:17:44,280 --> 00:17:47,040 DATA THEY BRING FORWARD IS ALSO 492 00:17:47,040 --> 00:17:48,160 CRITICAL, IT BE DONE AT THE 493 00:17:48,160 --> 00:17:51,320 PATIENT LEVEL SO WE CAN REALLY 494 00:17:51,320 --> 00:17:53,280 DECIPHER WHAT GENES AND WHAT 495 00:17:53,280 --> 00:17:55,480 ENVIRONMENTAL FACTORS CAN BE 496 00:17:55,480 --> 00:17:57,680 USED TO DEFINE PATIENTS IN 497 00:17:57,680 --> 00:17:58,640 FUTURE TRIALS WITH PRECISION 498 00:17:58,640 --> 00:17:59,760 MEDICINE STRATEGIES. 499 00:17:59,760 --> 00:18:02,720 SO WE REALLY NEED TO LOOK AT 500 00:18:02,720 --> 00:18:07,160 THAT INDIVIDUAL PATIENT-LEVEL 501 00:18:07,160 --> 00:18:07,640 DATA FOR SUCCESS. 502 00:18:07,640 --> 00:18:08,840 >>DO EITHER OF THE TWO OF YOU 503 00:18:08,840 --> 00:18:10,680 WANT TO TAKE IT? 504 00:18:10,680 --> 00:18:13,760 DAVID, I THINK YOU'RE MORE 505 00:18:13,760 --> 00:18:14,000 AGGREGATE. 506 00:18:14,000 --> 00:18:15,200 >>I THINK THERE'S TWO WAYS OF 507 00:18:15,200 --> 00:18:16,480 THINKING ABOUT PATIENT DATA. 508 00:18:16,480 --> 00:18:18,440 THERE'S SORT OF DATA ABOUT 509 00:18:18,440 --> 00:18:21,000 PATIENTS, AND DATA FROM 510 00:18:21,000 --> 00:18:21,240 PATIENTS. 511 00:18:21,240 --> 00:18:23,680 AND I TEND TO SPEND MORE TIME 512 00:18:23,680 --> 00:18:27,160 SORT OF IN THE SECOND SPACE, 513 00:18:27,160 --> 00:18:30,360 BECAUSE NORD RUNS THE "I AM RARE 514 00:18:30,360 --> 00:18:33,880 PROGRAM," REALLY ABOUT PATIENT 515 00:18:33,880 --> 00:18:35,640 ADVOCACY GROUPS, SPONSORING, 516 00:18:35,640 --> 00:18:37,360 DESIGNING, IMPLEMENTING NATURAL 517 00:18:37,360 --> 00:18:39,040 HISTORY STUDIES THAT ARE BASED 518 00:18:39,040 --> 00:18:40,360 ON DATA FROM PATIENTS. 519 00:18:40,360 --> 00:18:42,400 SO THAT'S REALLY THE SPACE WHERE 520 00:18:42,400 --> 00:18:44,360 WE'RE REALLY THINKING ABOUT IT, 521 00:18:44,360 --> 00:18:46,880 WHAT IS IT THAT PATIENTS KNOW 522 00:18:46,880 --> 00:18:48,520 ABOUT THEIR LIVED EXPERIENCE 523 00:18:48,520 --> 00:18:50,800 THAT CAN CONTRIBUTE AND REALLY 524 00:18:50,800 --> 00:18:53,240 BE MEANINGFUL AS WE THINK ABOUT 525 00:18:53,240 --> 00:18:55,040 OUR UNDERSTANDING OF THE 526 00:18:55,040 --> 00:18:59,600 DISEASE. 527 00:18:59,600 --> 00:19:02,760 >>WE'RE STILL SHARING. 528 00:19:02,760 --> 00:19:06,920 SO I THINK FROM PATIENT DATA 529 00:19:06,920 --> 00:19:07,520 PERSPECTIVE, ABSOLUTELY AGREE 530 00:19:07,520 --> 00:19:09,560 WITH EVERYTHING THAT'S BEEN SAID 531 00:19:09,560 --> 00:19:09,920 ALREADY. 532 00:19:09,920 --> 00:19:12,880 I THINK THE PLACE FOR ME THAT'S 533 00:19:12,880 --> 00:19:15,040 MOST EXCITING IS FOR MOST OF OUR 534 00:19:15,040 --> 00:19:16,240 CAREERS WHEN WE THOUGHT ABOUT 535 00:19:16,240 --> 00:19:19,840 PATIENT DATA, IT ALWAYS HAD THIS 536 00:19:19,840 --> 00:19:21,720 CONNOTATION OF LIVED EXPERIENCE 537 00:19:21,720 --> 00:19:22,480 OR PATIENT-REPORTED OUTCOME DATA 538 00:19:22,480 --> 00:19:24,000 AND WENT IN THIS BOX OF THINGS 539 00:19:24,000 --> 00:19:27,760 WE GET FROM THE PATIENTS. 540 00:19:27,760 --> 00:19:29,920 AND THEN A LOT OF THE HARD DATA 541 00:19:29,920 --> 00:19:31,240 CAME FROM THE RESEARCH SITES AND 542 00:19:31,240 --> 00:19:34,480 CAME FROM OTHER PLACES. 543 00:19:34,480 --> 00:19:36,840 I THINK THAT TRANSITION IS 544 00:19:36,840 --> 00:19:38,800 REALLY EMBLEMATIC OF THE OVERALL 545 00:19:38,800 --> 00:19:40,440 TRANSITION TO WHERE EVEN WHEN WE 546 00:19:40,440 --> 00:19:42,520 THINK ABOUT WHAT PATIENTS CAN 547 00:19:42,520 --> 00:19:44,720 SHARE, IT'S NO LONGER JUST THEIR 548 00:19:44,720 --> 00:19:47,440 LIVED EXPERIENCE OR JUST 549 00:19:47,440 --> 00:19:48,160 RESPONDING TO A PRO. 550 00:19:48,160 --> 00:19:51,040 THANKS TO ONE OF THE PLACES THE 551 00:19:51,040 --> 00:19:52,720 GOVERNMENT DOESN'T GET ENOUGH 552 00:19:52,720 --> 00:19:55,320 CREDIT, THE LONG TAIL OF 553 00:19:55,320 --> 00:19:58,440 INVESTMENTS MADE FROM THE 554 00:19:58,440 --> 00:20:02,080 RECOVERY ACT THROUGH THROUGH THE 555 00:20:02,080 --> 00:20:04,960 2016 CURES ACT, AND THE RELATED 556 00:20:04,960 --> 00:20:06,480 ADVANCEMENTS IN THE INTERIM, WE 557 00:20:06,480 --> 00:20:07,960 NOW ARE ABLE TO GIVE PATIENTS 558 00:20:07,960 --> 00:20:09,240 ACCESS TO THEIR OWN DATA. 559 00:20:09,240 --> 00:20:12,240 THEY ARE ABLE TO RETRIEVE THAT 560 00:20:12,240 --> 00:20:12,800 ELECTRONICALLY, SHARE WITH 561 00:20:12,800 --> 00:20:14,080 PEOPLE THEY TRUST. 562 00:20:14,080 --> 00:20:15,400 SO I THINK THAT'S VERY MUCH 563 00:20:15,400 --> 00:20:16,520 CHANGING THE LANDSCAPE OF WHAT 564 00:20:16,520 --> 00:20:18,760 WE AS A COMMUNITY THINK MUCH AS 565 00:20:18,760 --> 00:20:20,760 PATIENT DATA, AND THINK OF AT 566 00:20:20,760 --> 00:20:23,920 DATA THAT IS ACCESSIBLE TO 567 00:20:23,920 --> 00:20:24,680 NON-PROFITS. 568 00:20:24,680 --> 00:20:26,440 WE NO LONGER ARE BEHOLDEN TO 569 00:20:26,440 --> 00:20:28,640 SITE NETWORKS IF WE WANT TO GET 570 00:20:28,640 --> 00:20:30,720 CLINICAL DATA, NO LONGER 571 00:20:30,720 --> 00:20:31,400 BEHOLDEN TO CLINICAL 572 00:20:31,400 --> 00:20:32,360 PARTNERSHIPS TO LEARN WHAT'S 573 00:20:32,360 --> 00:20:34,800 HAPPENING IN THE DOCTOR'S OFFICE 574 00:20:34,800 --> 00:20:35,840 AS OPPOSED JUST WHAT IS 575 00:20:35,840 --> 00:20:38,200 HAPPENING AT HOME. 576 00:20:38,200 --> 00:20:39,680 THAT INVERSION IS ALSO EXPOSING 577 00:20:39,680 --> 00:20:41,680 TO LIFE SCIENCE COMPANIES AND 578 00:20:41,680 --> 00:20:42,680 OTHER PARTNERS THAT, WAIT A 579 00:20:42,680 --> 00:20:45,160 SECOND, WE DON'T HAVE TO TREAT 580 00:20:45,160 --> 00:20:48,920 THE PATIENT AS A BY-PRODUCT OF 581 00:20:48,920 --> 00:20:49,280 RESEARCH. 582 00:20:49,280 --> 00:20:50,880 WE CAN TREAT THEM AS THE CENTER 583 00:20:50,880 --> 00:20:51,080 OF IT. 584 00:20:51,080 --> 00:20:52,520 OUR DATA BECOMES A WAY TO 585 00:20:52,520 --> 00:20:54,720 AUGMENT WHAT WE'RE ABLE TO 586 00:20:54,720 --> 00:20:56,440 ACHIEVE DIRECTLY FROM PATIENTS. 587 00:20:56,440 --> 00:20:58,400 NOW WE HAVE A NATURAL PATHWAY TO 588 00:20:58,400 --> 00:21:02,800 BRING TOGETHER THINGS LIKE WHAT 589 00:21:02,800 --> 00:21:04,600 DIANE WAS TALKING ABOUT, 590 00:21:04,600 --> 00:21:05,240 TYPICALLY DE-IDENTIFIED DATA AT 591 00:21:05,240 --> 00:21:07,400 THE PATIENT LEVEL AND MARRY THAT 592 00:21:07,400 --> 00:21:09,160 WITH DIRECT TO PATIENT 593 00:21:09,160 --> 00:21:10,680 INITIATIVES THAT ARE PLACING 594 00:21:10,680 --> 00:21:11,760 THOSE IDENTIFIED FOLKS RIGHT AT 595 00:21:11,760 --> 00:21:12,880 THE CENTER, AND NOW ANYTHING 596 00:21:12,880 --> 00:21:15,160 THAT MAY BE RELATED TO THEIR 597 00:21:15,160 --> 00:21:15,800 HEALTH, ENVIRONMENTAL FACTORS, 598 00:21:15,800 --> 00:21:17,800 DATA THEY CAN SHARE FROM A 599 00:21:17,800 --> 00:21:19,000 WEARABLE, DATA THEY CAN RESPOND 600 00:21:19,000 --> 00:21:23,800 TO, THAT THEY HAVE OBSERVED IN 601 00:21:23,800 --> 00:21:26,560 THE FAMILIES CAN COME TOGETHER 602 00:21:26,560 --> 00:21:28,160 AS A 360-DEGREE VIEW. 603 00:21:28,160 --> 00:21:32,560 THE DEFINITION IS HARD BECAUSE 604 00:21:32,560 --> 00:21:33,560 IT'S EXPANDED DRAMATICALLY OVER 605 00:21:33,560 --> 00:21:34,200 THE YEARS. 606 00:21:34,200 --> 00:21:35,920 >>YOU MENTIONED TRUST AND THE 607 00:21:35,920 --> 00:21:37,360 HOLISTIC CARE BECAUSE I THINK 608 00:21:37,360 --> 00:21:40,000 WE'VE GOTTEN SO SILOED IN OUR 609 00:21:40,000 --> 00:21:41,640 VIEW OF EVERYTHING THAT WE 610 00:21:41,640 --> 00:21:42,840 REALLY DON'T PUT THINGS TOGETHER 611 00:21:42,840 --> 00:21:44,800 TO FIGURE THESE THINGS OUT IN A 612 00:21:44,800 --> 00:21:46,120 WAY WE SHOULD. 613 00:21:46,120 --> 00:21:47,520 WE HAVE A COUPLE DIFFERENT 614 00:21:47,520 --> 00:21:48,320 ORGANIZATIONS HERE. 615 00:21:48,320 --> 00:21:50,280 ONE OF THE THINGS I WANTED TO 616 00:21:50,280 --> 00:21:52,920 ASK YOU IS WE HAVE MULTIPLE 617 00:21:52,920 --> 00:21:54,920 STAKEHOLDERS UP HERE. 618 00:21:54,920 --> 00:21:57,160 WHAT ARE THE PRIMARY INTERESTS 619 00:21:57,160 --> 00:21:59,240 AND PRIORITIES AND CONCERNS FOR 620 00:21:59,240 --> 00:22:01,360 EACH OF OUR STAKEHOLDERS UP 621 00:22:01,360 --> 00:22:01,560 HERE? 622 00:22:01,560 --> 00:22:04,040 FOR ME, I WILL TELL YOU THE DATA 623 00:22:04,040 --> 00:22:05,800 IS MY WAY OF SOLVING THINGS. 624 00:22:05,800 --> 00:22:07,880 I FEEL LIKE THE ONLY PERSON WITH 625 00:22:07,880 --> 00:22:10,400 ENOUGH INCENTIVE TO FIX ME IS 626 00:22:10,400 --> 00:22:11,120 ME. 627 00:22:11,120 --> 00:22:12,600 SO HOW WE AGGREGATE THAT DATA IS 628 00:22:12,600 --> 00:22:14,120 ONE OF MY POINTS OF INTEREST. 629 00:22:14,120 --> 00:22:17,720 I WOULD LOVE TO HEAR FROM THE 630 00:22:17,720 --> 00:22:18,840 THREE OF YOU. 631 00:22:18,840 --> 00:22:21,160 DIANE, DO YOU WANT TO GO FIRST? 632 00:22:21,160 --> 00:22:21,560 >>YES. 633 00:22:21,560 --> 00:22:22,760 THANK YOU SO MUCH. 634 00:22:22,760 --> 00:22:24,400 ONE OF THE MOST REWARDING THINGS 635 00:22:24,400 --> 00:22:27,360 ABOUT MY ROLE AT CRITICAL PATH 636 00:22:27,360 --> 00:22:28,760 INSTITUTE IS BRINGING DIVERSE 637 00:22:28,760 --> 00:22:30,000 STAKEHOLDERS TOGETHER. 638 00:22:30,000 --> 00:22:32,320 WHEN WE STARTED, WHEN I CAME, 639 00:22:32,320 --> 00:22:34,080 THE IDEA OF DIFFERENT GROUPS 640 00:22:34,080 --> 00:22:35,920 WORKING TOGETHER WAS QUITE 641 00:22:35,920 --> 00:22:36,920 FOREIGN, ESPECIALLY DIFFERENT 642 00:22:36,920 --> 00:22:37,880 COMPANIES THAT WERE COMPETING TO 643 00:22:37,880 --> 00:22:40,280 TRY TO GET THERAPIES APPROVED. 644 00:22:40,280 --> 00:22:41,800 NOW IT'S A WHOLE NEW WORLD, 645 00:22:41,800 --> 00:22:42,200 RIGHT? 646 00:22:42,200 --> 00:22:44,880 I WANT TO THANK THE FDA 647 00:22:44,880 --> 00:22:47,840 ESPECIALLY FOR THEIR LEADERSHIP 648 00:22:47,840 --> 00:22:49,920 AND PATIENT-FOCUSED DRUG 649 00:22:49,920 --> 00:22:50,520 DEVELOP. 650 00:22:50,520 --> 00:22:51,240 BUT BRINGING TOGETHER 651 00:22:51,240 --> 00:22:51,880 STAKEHOLDERS, PUTTING THE 652 00:22:51,880 --> 00:22:54,080 PATIENT FRONT AND CENTER TO THE 653 00:22:54,080 --> 00:22:57,600 NETWORK AND ECOSYSTEM IS RATHER 654 00:22:57,600 --> 00:22:57,800 NEW. 655 00:22:57,800 --> 00:22:59,360 IN INDUSTRY WE DIDN'T EVEN HAVE 656 00:22:59,360 --> 00:23:02,520 THAT CONVERSATION WHEN I WAS IN 657 00:23:02,520 --> 00:23:03,960 THE LAB ABOUT PATIENT-CENTERED 658 00:23:03,960 --> 00:23:05,520 DRUG DEVELOPMENT AND HOW THESE 659 00:23:05,520 --> 00:23:07,160 NOVEL TARGETS NEEDED TO REALLY 660 00:23:07,160 --> 00:23:08,760 LOOK AT WHAT'S CLINICALLY 661 00:23:08,760 --> 00:23:10,120 MEANINGFUL TO PEOPLE IN THEIR 662 00:23:10,120 --> 00:23:10,880 LIVES. 663 00:23:10,880 --> 00:23:14,720 FOR ME, THE BIGGEST EARLIEST 664 00:23:14,720 --> 00:23:16,480 STAKEHOLDER GROUP THAT WAS 665 00:23:16,480 --> 00:23:18,240 REALLY INHERENTLY DIFFICULT TO 666 00:23:18,240 --> 00:23:19,880 GRASP WHAT SUCCESS LOOKS LIKE IN 667 00:23:19,880 --> 00:23:21,120 THIS DATA SHARING SPACE IS THE 668 00:23:21,120 --> 00:23:24,120 ACADEMICS, AND THIS IS WHERE THE 669 00:23:24,120 --> 00:23:25,600 NINDS COMES IN TO HELP BRIDGE 670 00:23:25,600 --> 00:23:25,920 THAT. 671 00:23:25,920 --> 00:23:28,560 AND OUR PARTNERS IN EUROPE AS 672 00:23:28,560 --> 00:23:32,360 WELL, BECAUSE, AGAIN, THAT 673 00:23:32,360 --> 00:23:33,280 INCORPORATION TUITIONAL 674 00:23:33,280 --> 00:23:35,560 GOVERNANCE AND HISTORY IS 675 00:23:35,560 --> 00:23:38,160 ACADEMIC ADVANCE THROUGH 676 00:23:38,160 --> 00:23:39,520 INDIVIDUAL SUCCESSES BY 677 00:23:39,520 --> 00:23:40,280 PUBLISHING PAPERS AND GETTING 678 00:23:40,280 --> 00:23:46,200 TENURE TRACK, THE WORLD HAS 679 00:23:46,200 --> 00:23:46,400 CHANGED. 680 00:23:46,400 --> 00:23:48,040 OBVIOUSLY INDUSTRY BEING AT THE 681 00:23:48,040 --> 00:23:50,880 TABLE, WITH PAYERS NOW AND THE 682 00:23:50,880 --> 00:23:52,400 REGULATORS ARE EARLY AND OFTEN 683 00:23:52,400 --> 00:23:54,240 FULLY ENGAGED IN WHAT WE DO. 684 00:23:54,240 --> 00:24:00,640 EVERYTHING WE DO AT C-PATH IS 685 00:24:00,640 --> 00:24:02,080 UNDER ADVISEMENT OF WORLDWIDE 686 00:24:02,080 --> 00:24:03,880 REGULATORY AGENCIES. 687 00:24:03,880 --> 00:24:04,800 HAVING THE PATIENTS DRIVE 688 00:24:04,800 --> 00:24:07,000 EVERYTHING IS NEW AND EVOLVING 689 00:24:07,000 --> 00:24:08,320 BUT I'M SO REWARDED. 690 00:24:08,320 --> 00:24:10,480 THIS MEETING IS SUCH A TESTIMONY 691 00:24:10,480 --> 00:24:12,120 TO WHAT'S HAPPENED AND HOW 692 00:24:12,120 --> 00:24:15,840 TRANSFORMATION IS TAKING PLACE. 693 00:24:15,840 --> 00:24:19,200 >>WE ALL LOVE TO HEAR THAT. 694 00:24:19,200 --> 00:24:21,080 DAVID, DO YOU WANT TO GO NEXT? 695 00:24:21,080 --> 00:24:23,400 >>SURE. 696 00:24:23,400 --> 00:24:26,360 I HAVE A SLIGHTLY MAYBE UNIQUE 697 00:24:26,360 --> 00:24:28,440 PERSPECTIVE SITTING IN A VERY 698 00:24:28,440 --> 00:24:30,400 LARGE CRO, BUT SITTING WITHIN A 699 00:24:30,400 --> 00:24:33,800 PART OF THAT CRO THAT'S 700 00:24:33,800 --> 00:24:34,800 DEDICATED TO SERVING 701 00:24:34,800 --> 00:24:35,080 NON-PROFITS. 702 00:24:35,080 --> 00:24:37,480 SO I'D LIKE TO THINK THAT 703 00:24:37,480 --> 00:24:38,920 PURVIEW OF BEING ABLE TO SEE 704 00:24:38,920 --> 00:24:40,120 ESSENTIALLY WHAT'S HAPPENING IN 705 00:24:40,120 --> 00:24:44,080 LIFE SCIENCES AS WELL AS WHAT 706 00:24:44,080 --> 00:24:46,040 WE'RE SEEING IN HEALTH CARE 707 00:24:46,040 --> 00:24:47,360 ORGANIZATIONS AND NON-PROFIT 708 00:24:47,360 --> 00:24:50,160 SPACE, WE TRY TO BRING 709 00:24:50,160 --> 00:24:50,760 STAKEHOLDERS TOGETHER NOT SO 710 00:24:50,760 --> 00:24:51,480 MUCH DIRECTLY. 711 00:24:51,480 --> 00:24:52,600 WE DO THAT SOMETIMES. 712 00:24:52,600 --> 00:24:56,240 BUT WE SEE OUR ROLE AS PRIMARILY 713 00:24:56,240 --> 00:24:58,320 FOCUSING ON WHERE THE HIDDEN 714 00:24:58,320 --> 00:25:00,160 BEST PRACTICES THAT WOULD NEVER 715 00:25:00,160 --> 00:25:02,360 ACTUALLY BE SHARED ACROSS THE 716 00:25:02,360 --> 00:25:03,080 DIFFERENT STAKEHOLDERS GROUPS 717 00:25:03,080 --> 00:25:04,880 BECAUSE OF THEIR NATURAL ROLES 718 00:25:04,880 --> 00:25:06,640 IN THE RESEARCH ENTERPRISE. 719 00:25:06,640 --> 00:25:09,920 WHETHER THAT'S TECHNOLOGY BASED 720 00:25:09,920 --> 00:25:11,960 OR PATIENT-FACING, YOU KNOW, WE 721 00:25:11,960 --> 00:25:13,000 SEE OURSELVES TRYING TO SAY, 722 00:25:13,000 --> 00:25:15,320 HEY, YOU MAY NOT BE AWARE THAT 723 00:25:15,320 --> 00:25:17,120 NON-PROFITS CAN DO THIS NOW 724 00:25:17,120 --> 00:25:18,000 BECAUSE YOUR EXPERIENCE 725 00:25:18,000 --> 00:25:19,680 PREVIOUSLY HAS BEEN X, AND IT 726 00:25:19,680 --> 00:25:22,080 WAS LIMITED TO THIS BOX. 727 00:25:22,080 --> 00:25:26,120 BUT I'M ON PROJECTS THAT HAS 728 00:25:26,120 --> 00:25:33,000 THEM PUTTING TOGETHER PLATFORMS 729 00:25:33,000 --> 00:25:35,160 CAPABLE OF GOING BEYOND IN THE 730 00:25:35,160 --> 00:25:39,240 HISTORY OR JUST BEING PART OF 731 00:25:39,240 --> 00:25:41,320 IT, I THINK THAT'S BEEN A 732 00:25:41,320 --> 00:25:42,720 BENEFICIAL PART OF MY JOB, 733 00:25:42,720 --> 00:25:44,360 SEEING ACROSS THE BOARD AND THEN 734 00:25:44,360 --> 00:25:46,040 SAY LET ME JUST CLARIFY THAT 735 00:25:46,040 --> 00:25:47,320 ASSUMPTION FOR YOU BECAUSE 736 00:25:47,320 --> 00:25:48,560 THERE'S BETTER PARTNERSHIPS THAT 737 00:25:48,560 --> 00:25:49,400 CAN BE HAPPENING HERE. 738 00:25:49,400 --> 00:25:50,640 >>I LOVE THAT YOU'RE SAYING 739 00:25:50,640 --> 00:25:51,320 THAT. 740 00:25:51,320 --> 00:25:54,480 I LOVE THAT THE CROs HAVE 741 00:25:54,480 --> 00:25:56,320 TAKEN A DIFFERENT STANCE. 742 00:25:56,320 --> 00:26:00,160 EIGHT YEARS AGO WHEN I STARTED 743 00:26:00,160 --> 00:26:01,680 INTERACTING WITH CROs I ASKED 744 00:26:01,680 --> 00:26:02,800 HOW WE INVOLVE PATIENTS. 745 00:26:02,800 --> 00:26:03,440 WE DON'T. 746 00:26:03,440 --> 00:26:07,600 THAT'S UP TO OUR SPONSORS. 747 00:26:07,600 --> 00:26:12,520 THAT HAS CHANGED, AND I'M 748 00:26:12,520 --> 00:26:12,880 EXCITED FOR IT. 749 00:26:12,880 --> 00:26:14,480 >>SURE, NOT MUCH TO ADD. 750 00:26:14,480 --> 00:26:15,680 WE REALLY TALKED ABOUT THIS BUT 751 00:26:15,680 --> 00:26:18,000 I THINK THAT'S THE CHANGE THAT 752 00:26:18,000 --> 00:26:20,400 WE'RE SEEING THAT WE'RE THINKING 753 00:26:20,400 --> 00:26:24,000 ABOUT STAKEHOLDERS, IN THIS 754 00:26:24,000 --> 00:26:26,320 REALLY BROAD WAY. 755 00:26:26,320 --> 00:26:28,280 REGULATORS, PAYERS, PATIENTS, 756 00:26:28,280 --> 00:26:31,440 FAMILY MEMBERS, THINKING ABOUT 757 00:26:31,440 --> 00:26:33,200 BRINGING EVERYBODY TOGETHER IN 758 00:26:33,200 --> 00:26:34,080 WAYS WE HAVEN'T. 759 00:26:34,080 --> 00:26:39,400 TO REALLY START DOING SOME OF 760 00:26:39,400 --> 00:26:41,720 THAT WORK TO UNDERSTAND WHERE 761 00:26:41,720 --> 00:26:42,920 THERE ARE TENSION POINTS AND 762 00:26:42,920 --> 00:26:45,360 WHAT DO GROUPS NEED SO WHAT 763 00:26:45,360 --> 00:26:47,320 WE'RE BUILDING AND DESIGNING CAN 764 00:26:47,320 --> 00:26:52,560 MEET THE NEEDS OF ALL OF THESE 765 00:26:52,560 --> 00:26:53,440 GROUPS MOVING FORWARD. 766 00:26:53,440 --> 00:26:54,120 >>WE COVERED MOST. 767 00:26:54,120 --> 00:26:56,160 I WANT TO MOVE ON BECAUSE THIS 768 00:26:56,160 --> 00:26:57,920 IS A VAST LANDSCAPE FOR DATA. 769 00:26:57,920 --> 00:27:00,120 LET'S TALK ABOUT THE PROGRESS 770 00:27:00,120 --> 00:27:01,880 THAT HAS BEEN MADE IN DATA. 771 00:27:01,880 --> 00:27:03,400 DAVID, I KNOW YOU WANTED TO 772 00:27:03,400 --> 00:27:04,480 MENTION A FEW KEY POINTS. 773 00:27:04,480 --> 00:27:06,680 WE'LL START WITH YOU AND THEN, 774 00:27:06,680 --> 00:27:08,880 DIANE, WE'LL GO TO YOU NEXT. 775 00:27:08,880 --> 00:27:11,960 >>YEAH, I ALLUDED TO SOME. 776 00:27:11,960 --> 00:27:14,920 I THINK THAT IF YOUR JOB ISN'T 777 00:27:14,920 --> 00:27:17,240 TO NERD OUT ABOUT THE PROGRESS, 778 00:27:17,240 --> 00:27:23,000 IT'S REALLY EASY TO MISS IT. 779 00:27:23,000 --> 00:27:25,520 BUT IT'S -- IN THE GRAND SCHEME 780 00:27:25,520 --> 00:27:29,480 OF THINGS THERE'S BEEN A METHOD 781 00:27:29,480 --> 00:27:31,680 TO THE MADNESS WHERE INVESTMENTS 782 00:27:31,680 --> 00:27:33,440 ARE MADE, TAKING THE U.S. QUITE 783 00:27:33,440 --> 00:27:35,840 FRANKLY FROM A PUNCHLINE WHEN IT 784 00:27:35,840 --> 00:27:40,000 CAME TO DATA INTRAOPERABILITY TO 785 00:27:40,000 --> 00:27:41,440 THE FRONT OF THE PACK. 786 00:27:41,440 --> 00:27:50,880 WHEN I WORKED WITH MY 787 00:27:50,880 --> 00:27:51,560 INTERNATIONAL COLLABORATORS I 788 00:27:51,560 --> 00:27:53,640 SAY LET'S DO IT THIS WAY, 789 00:27:53,640 --> 00:27:54,640 CONVERSATIONS BEFORE THAT WERE 790 00:27:54,640 --> 00:27:58,360 THE OTHER WAY AROUND. 791 00:27:58,360 --> 00:27:59,880 THE CRUX WAS THE 21ST CENTURY 792 00:27:59,880 --> 00:28:02,320 CURES ACT, THE DUAL INITIATIVES 793 00:28:02,320 --> 00:28:10,040 BY CMS AND OMC TO NOT ONLY 794 00:28:10,040 --> 00:28:15,000 MANDATE INTRATRAY BUILT TO OF 795 00:28:15,000 --> 00:28:16,320 BUT OF -- INTRAOPERABILITY, BUT 796 00:28:16,320 --> 00:28:17,600 EMPOWER THE PATIENTS AND MAKE IT 797 00:28:17,600 --> 00:28:19,200 CLEAR PATIENTS DO OWN THEIR DATA 798 00:28:19,200 --> 00:28:20,800 AND THEY ARE THE STAKEHOLDERS 799 00:28:20,800 --> 00:28:23,720 THAT MATTER MOST IN THIS 800 00:28:23,720 --> 00:28:24,040 CONVERSATION. 801 00:28:24,040 --> 00:28:25,480 AND THAT IF THEY DECIDE DATA 802 00:28:25,480 --> 00:28:27,040 SHOULD GO SOMEWHERE ELSE, IT 803 00:28:27,040 --> 00:28:27,880 GOES SOMEWHERE ELSE. 804 00:28:27,880 --> 00:28:29,880 AND THAT WAS JUST NOT THE CASE 805 00:28:29,880 --> 00:28:31,840 FOR OUR ENTIRE LIVES. 806 00:28:31,840 --> 00:28:34,320 SO I THINK THAT PROGRESS ALONE 807 00:28:34,320 --> 00:28:36,440 PAIRED WITH THE TECHNOLOGY 808 00:28:36,440 --> 00:28:37,720 DECISIONS THAT ONC MADE, WHERE 809 00:28:37,720 --> 00:28:40,280 THEY TOOK A STAND AND SAID WE'RE 810 00:28:40,280 --> 00:28:44,440 GOING TO GO WITH HL 7 FHIR, 811 00:28:44,440 --> 00:28:45,440 GOING TO MANDATE THINGS SPECIFIC 812 00:28:45,440 --> 00:28:46,640 INSTEAD OF BROAD AND EVERYBODY 813 00:28:46,640 --> 00:28:48,760 CAN IMPLEMENT WHAT THEY WANT, 814 00:28:48,760 --> 00:28:51,480 WE'RE ALREADY SEEING THE 815 00:28:51,480 --> 00:28:53,360 BENEFITS OF THAT AND EVEN IF WE 816 00:28:53,360 --> 00:28:55,000 HAVE SMARTPHONES CAN NOW 817 00:28:55,000 --> 00:28:56,040 DOWNLOAD OUR RECORDS. 818 00:28:56,040 --> 00:28:57,200 THAT'S THANK TO A LOT OF THAT 819 00:28:57,200 --> 00:28:59,160 WORK AND THE FACT WE CAN NOW 820 00:28:59,160 --> 00:29:02,800 SHARE WITH NON-PROFITS, THANKS 821 00:29:02,800 --> 00:29:03,480 TO THAT GOVERNMENT WORK. 822 00:29:03,480 --> 00:29:05,280 >>I WOULD SAY ON DATA OWNERSHIP 823 00:29:05,280 --> 00:29:08,920 WE'RE NOT QUITE THERE YET. 824 00:29:08,920 --> 00:29:11,200 OWNERSHIP I THINK IS A TERM THAT 825 00:29:11,200 --> 00:29:18,080 AS PATIENTS, I WORK WITH A GROUP 826 00:29:18,080 --> 00:29:20,600 LIKE COLLECTIVE, WE LIKE DIGITAL 827 00:29:20,600 --> 00:29:22,880 RIGHTS, BECAUSE OWNERSHIP 828 00:29:22,880 --> 00:29:26,080 IMPLIES YOU CAN SELL SOMETHING. 829 00:29:26,080 --> 00:29:27,840 WE DON'T WANT TO PUT THAT IN 830 00:29:27,840 --> 00:29:28,200 THERE. 831 00:29:28,200 --> 00:29:31,360 DIANE, WHAT ARE YOUR THOUGHTS? 832 00:29:31,360 --> 00:29:33,520 >>YEAH, PROGRESS TO ME IS JUST 833 00:29:33,520 --> 00:29:34,080 GAME CHANGING. 834 00:29:34,080 --> 00:29:36,240 AGAIN, I HAVE A LONG HISTORY OF 835 00:29:36,240 --> 00:29:36,880 DRUG DEVELOPMENT. 836 00:29:36,880 --> 00:29:38,960 WHEN I CAME TO CRITICAL PATH 837 00:29:38,960 --> 00:29:40,400 INSTITUTE 12 YEARS AGO WE HAD 838 00:29:40,400 --> 00:29:42,120 FIVE PROGRAMS. 839 00:29:42,120 --> 00:29:45,240 NOW WE HAVE OVER 28 DIFFERENT 840 00:29:45,240 --> 00:29:46,120 PROGRAMS ACROSS MULTIPLE 841 00:29:46,120 --> 00:29:46,520 DISEASES. 842 00:29:46,520 --> 00:29:47,320 THIS IS NINDS. 843 00:29:47,320 --> 00:29:50,240 SO MANY OF THESE DISORDERS SPAN 844 00:29:50,240 --> 00:29:51,880 NERVOUS SYSTEM DISORDERS BUT AN 845 00:29:51,880 --> 00:29:52,680 EXAMPLE OF WHAT'S TRANSFORMED 846 00:29:52,680 --> 00:29:54,960 JUST IN THE PAST FIVE YEARS IS 847 00:29:54,960 --> 00:29:57,160 IN THE AREA OF ALZHEIMER'S 848 00:29:57,160 --> 00:29:57,520 DISEASE. 849 00:29:57,520 --> 00:29:59,120 JUST FIVE YEARS AGO OUR 850 00:29:59,120 --> 00:30:00,840 INTEGRATED DATABASE LED BY THE 851 00:30:00,840 --> 00:30:04,960 CRITICAL PATH FOR ALZHEIMER'S 852 00:30:04,960 --> 00:30:07,040 DISEASE CONSORTIUM HAD ABOUT 853 00:30:07,040 --> 00:30:08,480 35,000 INDIVIDUAL PATIENT-LEVEL 854 00:30:08,480 --> 00:30:10,960 DATA RECORDS FROM 35,000 855 00:30:10,960 --> 00:30:11,440 PATIENTS. 856 00:30:11,440 --> 00:30:13,800 AS OF TODAY WE'VE PRESENTED LAST 857 00:30:13,800 --> 00:30:16,320 WEEK BY OUR PARTNERS AND LEADERS 858 00:30:16,320 --> 00:30:19,600 AT C-PATH, WE HAVE OVER 100,000 859 00:30:19,600 --> 00:30:21,920 INDIVIDUAL PATIENT RECORDS IN 860 00:30:21,920 --> 00:30:24,120 OUR INTEGRATED DATABASE, MANY 861 00:30:24,120 --> 00:30:25,200 FROM CLINICAL TRIALS INCLUDING 862 00:30:25,200 --> 00:30:27,040 BIOMARKER DATA WHICH IS 863 00:30:27,040 --> 00:30:27,960 TRANSFORMATIONAL HELPING US GET 864 00:30:27,960 --> 00:30:28,960 WHERE WE ARE TODAY. 865 00:30:28,960 --> 00:30:31,000 I'LL TELL YOU ONE OTHER AMAZING 866 00:30:31,000 --> 00:30:32,760 STORY THAT'S JUST EVOLVED OVER 867 00:30:32,760 --> 00:30:36,600 THE PAST YEAR, NOT A NERVOUS 868 00:30:36,600 --> 00:30:37,680 SYSTEM DISORDER BUT TYPE 1 869 00:30:37,680 --> 00:30:39,240 DIABETES CONSORTIUM WAS ABLE TO 870 00:30:39,240 --> 00:30:41,280 INNOVATE BY HAVING THE 871 00:30:41,280 --> 00:30:47,520 REGULATORY AGENCIES QUALIFY USE 872 00:30:47,520 --> 00:30:50,080 OF ISLET AUTO ANTIBODIES FOR 873 00:30:50,080 --> 00:30:51,360 PREVENTION, THREE YEARS AGO THAT 874 00:30:51,360 --> 00:30:51,840 HAPPENED. 875 00:30:51,840 --> 00:30:54,120 IN NOVEMBER OF LAST YEAR FIRST 876 00:30:54,120 --> 00:30:54,680 PREVENTION DRUG FOR TYPE 1 877 00:30:54,680 --> 00:30:55,960 DIABETES HAPPENED. 878 00:30:55,960 --> 00:30:59,160 ALL OF THAT HAPPENED THROUGH 879 00:30:59,160 --> 00:31:01,800 BIOLOGIC STAGING OF DISEASE, 880 00:31:01,800 --> 00:31:03,120 UNRAVELING IN ALZHEIMER'S, 881 00:31:03,120 --> 00:31:05,040 PARKINSON'S INITIATIVE THANKS TO 882 00:31:05,040 --> 00:31:05,960 STRONG LEADERSHIP FROM THE 883 00:31:05,960 --> 00:31:09,040 MICHAEL J. FOX FOUNDATION AND 884 00:31:09,040 --> 00:31:10,400 WORLDWIDE LEADERS, OUTLINING 885 00:31:10,400 --> 00:31:11,560 BIOLOGIC STAGING FOR PARKINSON'S 886 00:31:11,560 --> 00:31:13,760 WITH THE FDA. 887 00:31:13,760 --> 00:31:15,080 IT'S JUST INCREDIBLY EXCITING 888 00:31:15,080 --> 00:31:15,920 CHANGES THAT ARE HAPPENING SO 889 00:31:15,920 --> 00:31:18,800 FAST. 890 00:31:18,800 --> 00:31:25,800 >>LOVE TO HEAR THAT. 891 00:31:25,800 --> 00:31:26,000 ALIZA? 892 00:31:26,000 --> 00:31:27,680 >>AS I REFLECT BACK, WHAT 893 00:31:27,680 --> 00:31:29,840 CHANGED IS A MINDSET HOW WE 894 00:31:29,840 --> 00:31:33,480 THINK ABOUT IT, FROM THIS -- AS 895 00:31:33,480 --> 00:31:34,360 MENTIONED, MOVING FROM, OH, THAT 896 00:31:34,360 --> 00:31:36,760 WOULD BE NICE BUT IT'S HARD, TO 897 00:31:36,760 --> 00:31:38,800 HOW ARE WE GOING TO DO IT, WHAT 898 00:31:38,800 --> 00:31:41,240 TOOLS DO WE NEED, WHAT IS THE 899 00:31:41,240 --> 00:31:42,800 OVERSIGHT, WHAT IS THE PROCESS, 900 00:31:42,800 --> 00:31:46,040 WHAT ARE THE STEPS. 901 00:31:46,040 --> 00:31:48,480 REALLY THE FACT THAT WE'RE 902 00:31:48,480 --> 00:31:49,320 HAVING THIS CONVERSATION. 903 00:31:49,320 --> 00:31:50,400 I'M NOT SURE WE WOULD HAVE FIVE 904 00:31:50,400 --> 00:31:53,400 YEARS AGO. 905 00:31:53,400 --> 00:31:56,760 THIS IS INTEGRATED TO EVERY 906 00:31:56,760 --> 00:31:57,520 CONVERSATION ABOUT PROGRESS. 907 00:31:57,520 --> 00:31:58,960 >>AND INDIVIDUALLY THE PROGRESS 908 00:31:58,960 --> 00:32:01,600 THROUGH DATA IS REALLY JUST THE 909 00:32:01,600 --> 00:32:03,360 DIAGNOSTIC HELP IT'S BEEN ABLE 910 00:32:03,360 --> 00:32:05,200 TO GIVE TO ME. 911 00:32:05,200 --> 00:32:06,240 I LOOK PERFECTLY NORMAL BUT 912 00:32:06,240 --> 00:32:08,640 THERE'S A LOT OF ISSUES THAT 913 00:32:08,640 --> 00:32:09,600 WHEN PHYSICIANS HAVE DISMISSED 914 00:32:09,600 --> 00:32:11,240 ME, THE DATA HAS COME BACK TO 915 00:32:11,240 --> 00:32:11,800 SHOW OTHERWISE. 916 00:32:11,800 --> 00:32:13,440 SO I THINK IT'S REALLY IMPORTANT 917 00:32:13,440 --> 00:32:15,440 WHEN WE THINK ABOUT DATA AND HOW 918 00:32:15,440 --> 00:32:18,160 PATIENTS ARE ABLE TO COLLECT AND 919 00:32:18,160 --> 00:32:23,160 USE THEIR DATA IN THEIR OWN 920 00:32:23,160 --> 00:32:23,640 CARE. 921 00:32:23,640 --> 00:32:25,920 SO, GOING FROM THERE, 922 00:32:25,920 --> 00:32:26,920 INNOVATION, GOVERNMENT 923 00:32:26,920 --> 00:32:29,960 INITIATIVE, WE WANTED TO TOUCH 924 00:32:29,960 --> 00:32:31,520 ON WHAT WE'VE SEEN THERE, AS 925 00:32:31,520 --> 00:32:33,680 EACH OF YOUR ORGANIZATIONS, WHAT 926 00:32:33,680 --> 00:32:35,680 HAVE YOU EXPERIENCED ON THAT 927 00:32:35,680 --> 00:32:38,920 SIDE OF IT? 928 00:32:38,920 --> 00:32:40,920 DIANE, WE'LL GO WITH YOU AGAIN. 929 00:32:40,920 --> 00:32:43,080 >>SO GOVERNMENT INITIATIVES 930 00:32:43,080 --> 00:32:44,720 AND, AGAIN, I'LL HIGHLIGHT NINDS 931 00:32:44,720 --> 00:32:47,000 EFFORTS AND FUNDING RESEARCH FOR 932 00:32:47,000 --> 00:32:51,200 SO MANY NOVEL THERAPEUTIC 933 00:32:51,200 --> 00:32:53,680 TARGETS AND INITIATIVES LIKE THE 934 00:32:53,680 --> 00:32:54,800 BRAIN INITIATIVE, INCREDIBLE 935 00:32:54,800 --> 00:32:56,880 ADVANCES IN TECHNOLOGY, NOVEL 936 00:32:56,880 --> 00:32:59,720 TARGETS FOR THERAPY, WE'RE ALL 937 00:32:59,720 --> 00:33:01,480 FOCUSED, A CHAMPION FOR THE FDA, 938 00:33:01,480 --> 00:33:03,320 I DO THINK DIFFERENT 939 00:33:03,320 --> 00:33:04,200 STAKEHOLDERS PARTICULARLY 940 00:33:04,200 --> 00:33:05,520 PATIENT COMMUNITIES DON'T REALLY 941 00:33:05,520 --> 00:33:07,080 UNDERSTAND THE ROLE AND DRIVING 942 00:33:07,080 --> 00:33:11,760 CHANGE THAT THE FDA HAS HAD IN 943 00:33:11,760 --> 00:33:14,720 21ST CENTURY CURES IS JUST ONE 944 00:33:14,720 --> 00:33:14,960 EXAMPLE. 945 00:33:14,960 --> 00:33:20,320 DR. MICHELLE CAMPBELL IS JOINING 946 00:33:20,320 --> 00:33:21,640 THIS CALL, TRULY 947 00:33:21,640 --> 00:33:22,520 TRANSFORMATIONAL EFFORTS ACROSS 948 00:33:22,520 --> 00:33:24,680 NERVOUS SYSTEM DISORDERS BECAUSE 949 00:33:24,680 --> 00:33:26,320 OF THIS RADICAL CHANGE IN THE 950 00:33:26,320 --> 00:33:27,440 PATIENT VOICE. 951 00:33:27,440 --> 00:33:30,160 I SEE IT AFFECTING DRUG 952 00:33:30,160 --> 00:33:31,280 DEVELOPMENT EVERY DAY, AND 953 00:33:31,280 --> 00:33:34,320 PROBABLY THE BEST EXAMPLE I CAN 954 00:33:34,320 --> 00:33:36,840 SAY IS THE CRITICAL PATH 955 00:33:36,840 --> 00:33:38,560 INITIATIVE RECIPIENT OF FUNDS, A 956 00:33:38,560 --> 00:33:40,440 JOINT PARTNERSHIP, CRITICAL PATH 957 00:33:40,440 --> 00:33:41,760 FOR RARE NEURODEGENERATIVE 958 00:33:41,760 --> 00:33:44,600 DISEASES THAT INCLUDES ALS AND 959 00:33:44,600 --> 00:33:46,680 HUNTINGTON'S DISEASE AND FTD, 960 00:33:46,680 --> 00:33:47,640 MANY DISORDERS HIGHLIGHTED AT 961 00:33:47,640 --> 00:33:50,560 THIS MEETING CAME FROM FUNDING, 962 00:33:50,560 --> 00:33:51,520 THE RECOGNITION IF WE'RE GOING 963 00:33:51,520 --> 00:33:53,800 TO BRING TOGETHER WITH A PATIENT 964 00:33:53,800 --> 00:33:56,520 VOICE FRONT AND CENTER, TRULY 965 00:33:56,520 --> 00:33:57,840 TRANSLATIONAL DATA THAT'S GOING 966 00:33:57,840 --> 00:34:00,680 TO ATTACH VALUE AND GET US THESE 967 00:34:00,680 --> 00:34:02,560 THERAPIES AS FAST AS WE CAN WITH 968 00:34:02,560 --> 00:34:03,760 PATIENTS FRONT AND CENTER IS 969 00:34:03,760 --> 00:34:05,920 GOING TO TAKE THE FUNDS TO BRING 970 00:34:05,920 --> 00:34:10,000 THIS DATA FORWARD IN UNIQUE 971 00:34:10,000 --> 00:34:10,200 WAYS. 972 00:34:10,200 --> 00:34:12,080 SO, AGAIN, RECOGNITION OF THE 973 00:34:12,080 --> 00:34:13,520 ROLE OF REGULATORY AGENCIES 974 00:34:13,520 --> 00:34:18,000 CANNOT BE EMPHASIZED ENOUGH. 975 00:34:18,000 --> 00:34:19,960 >>EITHER OF THE TWO OF YOU WANT 976 00:34:19,960 --> 00:34:21,400 TO TAKE THAT FIRST? 977 00:34:21,400 --> 00:34:24,680 >>SURE. 978 00:34:24,680 --> 00:34:26,960 I'M PRIVILEGED TO BE -- NORD -- 979 00:34:26,960 --> 00:34:32,640 SORRY, I'LL TRY THAT AGAIN. 980 00:34:32,640 --> 00:34:34,080 SO, NORD ACTUALLY IS WORKING 981 00:34:34,080 --> 00:34:35,960 CURRENTLY NOW WITH THE CRITICAL 982 00:34:35,960 --> 00:34:38,360 PATH INSTITUTE ON A PROJECT 983 00:34:38,360 --> 00:34:39,200 THAT'S FUNDED BY FDA. 984 00:34:39,200 --> 00:34:43,240 THIS IS PART OF THE RARE DISEASE 985 00:34:43,240 --> 00:34:44,560 CURES ACCELERATOR PROGRAM. 986 00:34:44,560 --> 00:34:46,760 WHAT THIS PROGRAM IS, TO CREATE 987 00:34:46,760 --> 00:34:50,600 WHAT WE CALL DATA AND ANALYTICS 988 00:34:50,600 --> 00:34:50,960 PLATFORM. 989 00:34:50,960 --> 00:34:54,360 AND WHAT THIS PROGRAM IS 990 00:34:54,360 --> 00:34:56,400 ENVISIONING IS THIS CENTRAL 991 00:34:56,400 --> 00:34:59,240 REPOSITORY OF DATA, AND IT 992 00:34:59,240 --> 00:35:00,000 CURRENTLY -- THE PLATFORM 993 00:35:00,000 --> 00:35:01,800 EXISTS, THERE'S DATA ON THE 994 00:35:01,800 --> 00:35:02,160 PLATFORM. 995 00:35:02,160 --> 00:35:04,200 AND THE GOAL OF THIS, THIS IS 996 00:35:04,200 --> 00:35:06,680 THE PLACE THAT PEOPLE WILL GO, 997 00:35:06,680 --> 00:35:08,560 THAT REGULATORS WILL GO, THAT 998 00:35:08,560 --> 00:35:11,280 RESEARCHERS WILL GO, THAT 999 00:35:11,280 --> 00:35:12,720 PATIENTS AND FAMILIES CAN GO. 1000 00:35:12,720 --> 00:35:15,360 THIS IS WHERE THE RARE DISEASE 1001 00:35:15,360 --> 00:35:17,880 DATA WILL SIT AND AS PART OF 1002 00:35:17,880 --> 00:35:20,280 THIS PLATFORM ARE THE TOOLS FOR 1003 00:35:20,280 --> 00:35:21,720 PEOPLE TO INTERROGATE THE DATA, 1004 00:35:21,720 --> 00:35:23,360 TO ASK QUESTIONS OF THE DATA, 1005 00:35:23,360 --> 00:35:26,840 AND TO USE THE DATA IN THIS 1006 00:35:26,840 --> 00:35:27,640 CENTRAL REPOSITORY. 1007 00:35:27,640 --> 00:35:31,360 AND SO TO ME THIS IS REALLY LIKE 1008 00:35:31,360 --> 00:35:33,760 A CORE INITIATIVE OF FDA TO 1009 00:35:33,760 --> 00:35:35,520 REALLY START TO THINK ABOUT WHAT 1010 00:35:35,520 --> 00:35:37,720 IS DATA SHARING REALLY LOOK LIKE 1011 00:35:37,720 --> 00:35:40,080 IN A PRACTICAL WAY. 1012 00:35:40,080 --> 00:35:41,760 ALREADY TO DATE, THERE'S 1013 00:35:41,760 --> 00:35:43,720 CLINICAL TRIAL DATA, THERE'S 1014 00:35:43,720 --> 00:35:45,600 SEVEN OF THE NATURAL HISTORY 1015 00:35:45,600 --> 00:35:46,920 STUDIES ON THE PLATFORM, THERE 1016 00:35:46,920 --> 00:35:49,120 ARE OTHER GROUPS THAT HAVE 1017 00:35:49,120 --> 00:35:50,600 CONTRIBUTED DATA. 1018 00:35:50,600 --> 00:35:53,560 AND ALL TOGETHER, THIS DATA IS 1019 00:35:53,560 --> 00:35:55,200 REALLY HELPING US LEARN AND 1020 00:35:55,200 --> 00:35:58,360 INFORM THE DRUG DEVELOPMENT 1021 00:35:58,360 --> 00:35:59,560 PROCESS. 1022 00:35:59,560 --> 00:36:02,840 >>THAT'S PHENOMENAL. 1023 00:36:02,840 --> 00:36:04,760 THE WORK NORD AND C-PATH ARE 1024 00:36:04,760 --> 00:36:08,760 DOING ARE SETTING A WONDERFUL 1025 00:36:08,760 --> 00:36:10,400 EXAMPLE. 1026 00:36:10,400 --> 00:36:13,240 I THINK THE PLACES WHERE I'M 1027 00:36:13,240 --> 00:36:15,120 MOST HOPEFUL ARE IN THE FACT 1028 00:36:15,120 --> 00:36:16,520 THAT THE FRAMEWORKS THAT WE'RE 1029 00:36:16,520 --> 00:36:18,200 SETTING UP ARE DESIGNED WITH 1030 00:36:18,200 --> 00:36:20,800 LONG-TERM THINKING IN MIND. 1031 00:36:20,800 --> 00:36:23,680 SO WHEN WE THINK ABOUT WHAT ONC 1032 00:36:23,680 --> 00:36:25,960 HAS DONE, AS WELL AS FDA IN 1033 00:36:25,960 --> 00:36:29,040 TERMS OF GUIDANCE, FROM A 1034 00:36:29,040 --> 00:36:31,160 REGULATORY STANDPOINT, THESE 1035 00:36:31,160 --> 00:36:36,760 WEREN'T -- WHEN WE THINK ABOUT 1036 00:36:36,760 --> 00:36:37,480 INTRAOPERABILITY, THEY WEREN'T 1037 00:36:37,480 --> 00:36:38,040 ONE AND DONE. 1038 00:36:38,040 --> 00:36:40,920 THEY WERE SET UP AT FRAMEWORKS 1039 00:36:40,920 --> 00:36:42,080 WITH CONTINUOUS FEEDBACK LOOP. 1040 00:36:42,080 --> 00:36:43,520 WHEN WE THINK ABOUT 1041 00:36:43,520 --> 00:36:46,680 INTRAOPERABILITY TO THE POINT 1042 00:36:46,680 --> 00:36:47,320 CHRISTINE WAS MAKING, WE'RE AT 1043 00:36:47,320 --> 00:36:49,000 THE TIP OF THE ICEBERG WHEN IT 1044 00:36:49,000 --> 00:36:50,960 COMES TO WHAT WE CAN ACCESS AND 1045 00:36:50,960 --> 00:36:51,200 DO. 1046 00:36:51,200 --> 00:36:52,400 BUT THE FRAMEWORKS WERE PUT IN 1047 00:36:52,400 --> 00:36:54,280 PLACE AT THE EXACT SAME TIME TO 1048 00:36:54,280 --> 00:36:56,400 SAY, HERE IS HOW WE'RE GOING TO 1049 00:36:56,400 --> 00:36:59,520 EXPAND THIS YEAR OVER YEAR AND 1050 00:36:59,520 --> 00:37:01,480 HAVE A CONVENING MOTION WHERE 1051 00:37:01,480 --> 00:37:03,320 FOLKS WHO ARE SPECIALISTS IN A 1052 00:37:03,320 --> 00:37:06,520 GIVEN RARE DISEASE OR GIVEN 1053 00:37:06,520 --> 00:37:08,240 SPECIALTY CAN BRING THEIR 1054 00:37:08,240 --> 00:37:09,360 CONTRIBUTIONS TO THE GENERAL 1055 00:37:09,360 --> 00:37:12,200 PUBLIC, WE CAN GET IT INTO THE 1056 00:37:12,200 --> 00:37:13,440 NEXT GENERATION AND PUSH IT OUT 1057 00:37:13,440 --> 00:37:14,040 EVERY YEAR. 1058 00:37:14,040 --> 00:37:15,440 FOR INSTANCE, ONE OF THE THINGS 1059 00:37:15,440 --> 00:37:19,440 I'M WORKING ON RIGHT NOW IS FOR 1060 00:37:19,440 --> 00:37:22,280 THOSE OF YOU WHOSE TREATMENT 1061 00:37:22,280 --> 00:37:24,120 PATHWAYS OR DISEASE DIAGNOSTICS 1062 00:37:24,120 --> 00:37:25,320 ARE HEAVILY IMAGING BASED YOU'LL 1063 00:37:25,320 --> 00:37:26,880 KNOW THE PATIENT ACCESS RULES 1064 00:37:26,880 --> 00:37:28,600 RIGHT NOW REALLY DON'T GIVE 1065 00:37:28,600 --> 00:37:30,560 ACCESS TO THE CORE IMAGING DATA. 1066 00:37:30,560 --> 00:37:32,440 YOU CAN ONLY GET SUMMARIZED DATA 1067 00:37:32,440 --> 00:37:33,880 IN THE EHR. 1068 00:37:33,880 --> 00:37:37,240 NOW, THE IRONY, THAT DATA IS 1069 00:37:37,240 --> 00:37:38,160 REALLY CLOSE BECAUSE DISTANCE 1070 00:37:38,160 --> 00:37:39,200 RADIOLOGY HAS BEEN A THING FOR A 1071 00:37:39,200 --> 00:37:40,080 VERY LONG TIME. 1072 00:37:40,080 --> 00:37:42,280 WE KNOW HOW TO SHARE 1073 00:37:42,280 --> 00:37:42,920 RADIOGRAPHIC IMAGES AND 1074 00:37:42,920 --> 00:37:43,720 RADIOLOGY DATA. 1075 00:37:43,720 --> 00:37:46,640 BUT IT'S JUST ONE STEP AWAY FROM 1076 00:37:46,640 --> 00:37:50,480 THE PATIENT ACCESS. 1077 00:37:50,480 --> 00:37:54,040 I'M WORKING ON THE ARGONAUT 1078 00:37:54,040 --> 00:37:55,560 PROJECT, IT'S THE GRANDDADDY OF 1079 00:37:55,560 --> 00:38:00,120 WHAT GOES INTO THE HL 7 FHIR 1080 00:38:00,120 --> 00:38:01,560 SPECIFICATIONS AND BASE CORE 1081 00:38:01,560 --> 00:38:03,200 DATA FOR INTERDISCIPLINARY ON. 1082 00:38:03,200 --> 00:38:04,920 BUT THERE'S NOW A NEW PROJECT, 1083 00:38:04,920 --> 00:38:06,280 SPECIFIC LIVE ON BRINGING 1084 00:38:06,280 --> 00:38:08,360 IMAGING DATA INTO THE PATIENT 1085 00:38:08,360 --> 00:38:10,440 ACCESS RULE, SO WE'RE PUTTING 1086 00:38:10,440 --> 00:38:16,800 TOGETHER WORKING WITH A VARIETY 1087 00:38:16,800 --> 00:38:18,200 OF NON-PROFITS WHO NEED IMAGING 1088 00:38:18,200 --> 00:38:21,480 IN PATIENT REPOSITORY TO PUT 1089 00:38:21,480 --> 00:38:22,080 TOGETHER REFERENCE 1090 00:38:22,080 --> 00:38:22,720 IMPLEMENTATION AND DESCRIBE TO 1091 00:38:22,720 --> 00:38:25,840 THE WORLD HOW THIS WORKS IN A 1092 00:38:25,840 --> 00:38:27,200 WAY THAT'S REPEATABLE AND 1093 00:38:27,200 --> 00:38:27,720 CODIFIED. 1094 00:38:27,720 --> 00:38:31,480 THAT'S WHAT I'M HOPEFUL FOR, YOU 1095 00:38:31,480 --> 00:38:32,320 CAN SEE INNOVATIONS CONTINUING 1096 00:38:32,320 --> 00:38:33,240 BECAUSE OF THE FRAMEWORK THE 1097 00:38:33,240 --> 00:38:34,960 GOVERNMENT SET UP AND FUNDING 1098 00:38:34,960 --> 00:38:38,360 THAT'S NOW THERE, IN SOME CASES 1099 00:38:38,360 --> 00:38:39,920 STICKS, NOT JUST CARROTS, TO 1100 00:38:39,920 --> 00:38:43,120 MAKE SURE FOLKS FOLLOW ALONG. 1101 00:38:43,120 --> 00:38:44,720 >>ONE OTHER INITIATIVE, THE 1102 00:38:44,720 --> 00:38:46,680 "ALL OF US" RESEARCH PROGRAM. 1103 00:38:46,680 --> 00:38:48,640 SO ONE OF THE THINGS I THINK 1104 00:38:48,640 --> 00:38:51,040 ABOUT IS WE ALL HAVE THIS HOPE 1105 00:38:51,040 --> 00:38:53,000 TO GET TO PRECISION AND 1106 00:38:53,000 --> 00:38:53,800 PERSONALIZED MEDICINE BUT 1107 00:38:53,800 --> 00:38:55,560 WITHOUT DATA WE WILL NEVER GET 1108 00:38:55,560 --> 00:38:55,760 THERE. 1109 00:38:55,760 --> 00:38:57,400 AND SO I THINK THAT'S ONE OF THE 1110 00:38:57,400 --> 00:38:59,120 THINGS THAT AS PATIENTS WE HAVE 1111 00:38:59,120 --> 00:39:00,880 TO THINK ABOUT, WE HAVE TO SHARE 1112 00:39:00,880 --> 00:39:03,960 THAT DATA IN ORDER TO GET TO 1113 00:39:03,960 --> 00:39:06,480 DIFFERENT INNOVATIONS FOR 1114 00:39:06,480 --> 00:39:07,080 PEOPLE. 1115 00:39:07,080 --> 00:39:11,840 BUT YOU MENTIONED 1116 00:39:11,840 --> 00:39:12,480 INTRAOPERABILITY. 1117 00:39:12,480 --> 00:39:13,960 WHEN WE TALK ABOUT 1118 00:39:13,960 --> 00:39:15,680 INTRAOPERABILITY, WHAT DO YOU 1119 00:39:15,680 --> 00:39:18,080 GUYS SEE NOW AND WHAT IS YOUR 1120 00:39:18,080 --> 00:39:20,240 HOPE FOR THE FUTURE REGARDING 1121 00:39:20,240 --> 00:39:20,640 INTRAOPERABILITY? 1122 00:39:20,640 --> 00:39:22,600 I DON'T KNOW IF WE WANT TO GO TO 1123 00:39:22,600 --> 00:39:25,440 ONE OF YOU OR DIANE. 1124 00:39:25,440 --> 00:39:27,920 DIANE, DO YOU WANT TO GO FIRST? 1125 00:39:27,920 --> 00:39:29,680 >>SURE, I'LL START, YES. 1126 00:39:29,680 --> 00:39:31,640 SO, ONE OF THE INCREDIBLE 1127 00:39:31,640 --> 00:39:33,520 REWARDING FACTS ABOUT WORKING AT 1128 00:39:33,520 --> 00:39:35,920 C-PATH, WE HAVE AN UNBELIEVABLE 1129 00:39:35,920 --> 00:39:38,760 TALENTED GROUP OF DATA 1130 00:39:38,760 --> 00:39:40,520 SCIENTISTS THAT SPEND SO MUCH 1131 00:39:40,520 --> 00:39:40,720 TIME. 1132 00:39:40,720 --> 00:39:42,600 IT'S LIKE DOING A PUZZLE THAT 1133 00:39:42,600 --> 00:39:43,800 YOU CAN'T IMAGINE OF 10,000 1134 00:39:43,800 --> 00:39:47,560 PIECES TO GO IN AND TRY TO 1135 00:39:47,560 --> 00:39:49,720 UNDERSTAND HOW TO HARMONIZE DATA 1136 00:39:49,720 --> 00:39:51,480 COLLECTED FROM DIFFERENT STUDIES 1137 00:39:51,480 --> 00:39:53,120 AROUND THE WORLD. 1138 00:39:53,120 --> 00:39:54,200 EVEN DIFFERENT CLINICAL TRIALS 1139 00:39:54,200 --> 00:39:56,400 THAT HAVE THE SAME TARGET 1140 00:39:56,400 --> 00:39:57,920 POPULATION HAVE A WHOLE VARIETY 1141 00:39:57,920 --> 00:40:00,200 OF DIFFERENT WAYS THAT THEY 1142 00:40:00,200 --> 00:40:01,640 COLLECT THE DATA. 1143 00:40:01,640 --> 00:40:03,400 AND I THINK FOR ME THE DREAM 1144 00:40:03,400 --> 00:40:06,040 WOULD BE TO TRY TO UNDERSTAND 1145 00:40:06,040 --> 00:40:08,880 HOW WE CAN GET CONSENSUS UP 1146 00:40:08,880 --> 00:40:10,280 FRONT ON DATA STANDARDIZATION. 1147 00:40:10,280 --> 00:40:12,680 PEOPLE THAT HAVE WORKED IN THIS 1148 00:40:12,680 --> 00:40:14,120 FIELD SO LONG MAYBE DON'T 1149 00:40:14,120 --> 00:40:19,080 UNDERSTAND THE REASON WHY ADME 1150 00:40:19,080 --> 00:40:21,800 AND PPMI, ALZHEIMER'S DISEASE 1151 00:40:21,800 --> 00:40:23,760 AND PROGRESSION MARKER 1152 00:40:23,760 --> 00:40:24,960 INITIATIVE WERE SO SUCCESSFUL. 1153 00:40:24,960 --> 00:40:26,600 ONE FACTOR IS DATA SHARING THAT 1154 00:40:26,600 --> 00:40:29,360 LED TO THE CONCEPT OF BIOLOGIC 1155 00:40:29,360 --> 00:40:30,680 STAGING WITH BIOMARKERS, BUT 1156 00:40:30,680 --> 00:40:33,400 REALLY THE KEY SUCCESS THERE IS 1157 00:40:33,400 --> 00:40:35,360 THE STANDARDIZATION UP FRONT. 1158 00:40:35,360 --> 00:40:37,800 THEY AGREED TO COLLECT DATA AND 1159 00:40:37,800 --> 00:40:39,440 UNIFIED WAY ACROSS MULTIPLE 1160 00:40:39,440 --> 00:40:42,080 SITES AROUND THE WORLD. 1161 00:40:42,080 --> 00:40:43,800 AT THE ENDS SO YOU CAN INTEGRATE 1162 00:40:43,800 --> 00:40:47,160 AND UNDERSTAND HOW THIS DATA ALL 1163 00:40:47,160 --> 00:40:48,160 FITS TOGETHER. 1164 00:40:48,160 --> 00:40:52,120 IF THE WORLD WOULD RECOGNIZE 1165 00:40:52,120 --> 00:40:52,680 ESPECIALLY INDUSTRY TRIALS 1166 00:40:52,680 --> 00:40:54,080 ALIGNING UP FRONT IS GOING TO 1167 00:40:54,080 --> 00:40:55,280 HELP EVERYBODY IN THE ENDS, 1168 00:40:55,280 --> 00:40:57,920 BECAUSE IN THIS WORLD OF DIGITAL 1169 00:40:57,920 --> 00:41:00,320 TECHNOLOGY, JUST THE CONCEPT OF 1170 00:41:00,320 --> 00:41:03,400 HARMONIZING DEVICES ACROSS 1171 00:41:03,400 --> 00:41:03,880 DIFFERENT PLATFORMS IS 1172 00:41:03,880 --> 00:41:04,600 INCREDIBLY DIFFICULT. 1173 00:41:04,600 --> 00:41:06,800 I THINK THAT THAT'S JUST NOT 1174 00:41:06,800 --> 00:41:08,320 RECOGNIZED YET SO WE WANT TO 1175 00:41:08,320 --> 00:41:10,200 AGREE ON CONSENT AND STANDARDS 1176 00:41:10,200 --> 00:41:13,760 UP FRONT TO HELP US ALL DOWN THE 1177 00:41:13,760 --> 00:41:16,760 ROAD. 1178 00:41:16,760 --> 00:41:19,480 >>100% AGREEMENT. 1179 00:41:19,480 --> 00:41:23,760 I THINK THE PLACES WHERE -- 1180 00:41:23,760 --> 00:41:25,960 ACTUALLY A GOOD FRIEND WHO IS AN 1181 00:41:25,960 --> 00:41:29,560 EXPERT IN THE USE OF EYE 1182 00:41:29,560 --> 00:41:33,400 TRACKING FOR AUTISM EARLY 1183 00:41:33,400 --> 00:41:35,720 DIAGNOSIS, AND REALLY GETTING 1184 00:41:35,720 --> 00:41:36,680 DOWN TO THAT MICROSECOND 1185 00:41:36,680 --> 00:41:40,520 ALIGNMENT IN ORDER TO BRING 1186 00:41:40,520 --> 00:41:42,080 THESE PIECES OF DATA TOGETHER 1187 00:41:42,080 --> 00:41:43,720 MAKES THE PROBLEMS WE TRY TO 1188 00:41:43,720 --> 00:41:45,560 SOLVE SEEM MORE DOABLE. 1189 00:41:45,560 --> 00:41:47,960 I THINK WE'RE SEEING A COUPLE 1190 00:41:47,960 --> 00:41:48,320 BIG PICKUPS. 1191 00:41:48,320 --> 00:41:50,960 IT'S TO THE POINT I WAS MAKING 1192 00:41:50,960 --> 00:41:52,120 EARLIER, MAKING ME HOPEFUL. 1193 00:41:52,120 --> 00:41:54,760 ONE, FOR THOSE OF US WHO USED TO 1194 00:41:54,760 --> 00:41:57,800 HAVE TO DO SITE-BASED RESEARCH 1195 00:41:57,800 --> 00:42:00,320 WHERE HALF THE MEETINGS WERE 1196 00:42:00,320 --> 00:42:03,080 GETTING EVERYONE TO SET UP 1197 00:42:03,080 --> 00:42:06,360 REDCap INSTANCES THE SAME WAY, 1198 00:42:06,360 --> 00:42:12,400 THAT'S CHANGING AS WE USE HL7 1199 00:42:12,400 --> 00:42:13,960 FHIR, USING THINGS CONSISTENTLY, 1200 00:42:13,960 --> 00:42:16,600 ALIGNMENT IS AROUND HOW WE 1201 00:42:16,600 --> 00:42:17,360 DEFINE DATA, CLINICAL CONCEPTS, 1202 00:42:17,360 --> 00:42:19,000 WE AGREE THAT'S WHAT THIS THING 1203 00:42:19,000 --> 00:42:21,080 IS MEASURING AS OPPOSED TO 1204 00:42:21,080 --> 00:42:26,000 MAKING SURE WE HAVE PURE 1205 00:42:26,000 --> 00:42:28,080 ALIGNMENT FOR MUNGING DATA LATER 1206 00:42:28,080 --> 00:42:28,240 ON. 1207 00:42:28,240 --> 00:42:28,840 THAT'S A PICKUP. 1208 00:42:28,840 --> 00:42:31,360 THE OF WHERE THE HYPE CURVE HAS 1209 00:42:31,360 --> 00:42:33,120 GOTTEN PAST THIS, THIS IDEA JUST 1210 00:42:33,120 --> 00:42:34,960 BECAUSE WE'VE DEFINED SOMETHING 1211 00:42:34,960 --> 00:42:37,160 IN A STANDARD, THAT WE CAN NOW 1212 00:42:37,160 --> 00:42:39,160 LOOK AT IT ACROSS THESE DISEASE 1213 00:42:39,160 --> 00:42:40,400 AREAS, AND THEY ARE MAGICALLY 1214 00:42:40,400 --> 00:42:42,200 GOING TO COME TOGETHER. 1215 00:42:42,200 --> 00:42:43,720 SO TO THE POINT DIANE WAS 1216 00:42:43,720 --> 00:42:45,880 MAKING, THE ROLE OF DATA 1217 00:42:45,880 --> 00:42:47,120 SCIENTISTS ARE NOT GOING AWAY. 1218 00:42:47,120 --> 00:42:50,280 I THINK THERE'S A LEVEL OF RIGOR 1219 00:42:50,280 --> 00:42:52,680 THAT'S NOW -- IT'S NICE THAT FOR 1220 00:42:52,680 --> 00:42:55,520 A LOT OF NON-PROFITS THAT RIGOR 1221 00:42:55,520 --> 00:42:56,480 WASN'T ALWAYS REQUIRED. 1222 00:42:56,480 --> 00:42:58,880 BECAUSE WE DIDN'T REALIZE IT WAS 1223 00:42:58,880 --> 00:42:59,240 MISSING. 1224 00:42:59,240 --> 00:43:00,680 BUT NOW WE DO BECAUSE WE CAN 1225 00:43:00,680 --> 00:43:02,720 BRING IN THE LOTS OF DIFFERENT 1226 00:43:02,720 --> 00:43:04,400 KIND OF MODALITIES OF DATA, AND 1227 00:43:04,400 --> 00:43:06,800 ALL OF A SUDDEN YOU NEED THAT 1228 00:43:06,800 --> 00:43:08,880 EPI OR MEDICAL CODER OR DATA 1229 00:43:08,880 --> 00:43:10,520 SCIENTIST WHO CAN CLOSE THAT 1230 00:43:10,520 --> 00:43:12,160 LOOP TO SAY HERE'S WHAT THAT 1231 00:43:12,160 --> 00:43:13,880 MEANS, HERE'S WHAT WE 1232 00:43:13,880 --> 00:43:15,400 ACTUALLY -- HERE IS HOW THAT 1233 00:43:15,400 --> 00:43:17,600 MAPS DOWN TO THE SPECIFIC 1234 00:43:17,600 --> 00:43:19,480 RESEARCH QUESTION WE WERE TRYING 1235 00:43:19,480 --> 00:43:21,240 TO ANSWER AND WE CAN BE 1236 00:43:21,240 --> 00:43:22,800 CONFIDENT WE'RE ANSWERING IT THE 1237 00:43:22,800 --> 00:43:23,920 SAME WAY NOW THAT IT'S NO LONGER 1238 00:43:23,920 --> 00:43:28,360 INJURIES SITES. 1239 00:43:28,360 --> 00:43:29,560 JUST SITES. 1240 00:43:29,560 --> 00:43:31,400 YOU DON'T GET TO PICK. 1241 00:43:31,400 --> 00:43:33,720 THEY WENT WHERE THEY WENT. 1242 00:43:33,720 --> 00:43:34,480 THE IDEA OF RECONCILING 1243 00:43:34,480 --> 00:43:37,000 EVERYTHING STARTS TO GO AWAY. 1244 00:43:37,000 --> 00:43:41,880 KNOW -- NOW YOU NEED TO RELY ON 1245 00:43:41,880 --> 00:43:43,280 STANDARDS TO MAKE SURE THERE'S A 1246 00:43:43,280 --> 00:43:44,400 STARTING POINT SO WE CAN AGREE 1247 00:43:44,400 --> 00:43:47,680 ON THE LAST MILE. 1248 00:43:47,680 --> 00:43:50,520 NOT 1249 00:43:50,520 --> 00:43:52,600 >>NOT MUCH TO ADD. 1250 00:43:52,600 --> 00:43:56,080 IN ALL THE WORK WE'RE DOING WITH 1251 00:43:56,080 --> 00:43:56,840 PATIENT ADVOCACY GROUPS, THE 1252 00:43:56,840 --> 00:44:00,440 WORK IS ON THE EDUCATION AROUND 1253 00:44:00,440 --> 00:44:01,560 WHY DOES INTRAOPERABILITY 1254 00:44:01,560 --> 00:44:02,600 MATTER, BECAUSE SOMETIMES IT 1255 00:44:02,600 --> 00:44:04,520 REQUIRES YOU TO NOT HAVE THE 1256 00:44:04,520 --> 00:44:06,680 QUESTION THAT MAYBE YOU THINK IS 1257 00:44:06,680 --> 00:44:07,480 THE RIGHT ONE. 1258 00:44:07,480 --> 00:44:10,760 IT REQUIRES YOU TO MAYBE NOT 1259 00:44:10,760 --> 00:44:11,440 CUSTOMIZE YOUR SURVEY, PERHAPS 1260 00:44:11,440 --> 00:44:13,280 AS MUCH AS YOU WOULD WANT. 1261 00:44:13,280 --> 00:44:17,000 BUT TO START TO BUILD THIS 1262 00:44:17,000 --> 00:44:17,880 UNDERSTANDING AND THIS KNOWLEDGE 1263 00:44:17,880 --> 00:44:19,600 AROUND WHY WE ARE DOING DATA 1264 00:44:19,600 --> 00:44:22,000 STANDARDS AND WHY IT MATTERS AND 1265 00:44:22,000 --> 00:44:25,760 HOW IT ULTIMATELY HELPS THE 1266 00:44:25,760 --> 00:44:26,600 RESEARCH, SOME SPACES WE'VE 1267 00:44:26,600 --> 00:44:30,040 REALLY BEEN THINKING ABOUT. 1268 00:44:30,040 --> 00:44:32,640 >>I LOVE ALL OF YOUR RESPONSES. 1269 00:44:32,640 --> 00:44:33,840 MOVING FORWARD THERE'S GOING TO 1270 00:44:33,840 --> 00:44:39,480 BE A LOT OF BIG BREAKTHROUGHS IN 1271 00:44:39,480 --> 00:44:42,600 DATA, CHAT GPT, LARGE A.I. AND 1272 00:44:42,600 --> 00:44:43,920 LANGUAGE MODELS. 1273 00:44:43,920 --> 00:44:45,560 WHAT UPCOMING BREAKTHROUGHS ARE 1274 00:44:45,560 --> 00:44:48,640 YOU ANTICIPATING AND HOW CAN 1275 00:44:48,640 --> 00:44:49,320 ORGANIZATIONS PREPARE TO 1276 00:44:49,320 --> 00:44:57,400 LEVERAGE SOME OF THESE THINGS? 1277 00:44:57,400 --> 00:44:59,160 YOU CAN GO FIRST. 1278 00:44:59,160 --> 00:45:01,920 >>I THINK THERE'S TWO VERY -- 1279 00:45:01,920 --> 00:45:03,640 TWO PARALLEL THINGS THAT ARE 1280 00:45:03,640 --> 00:45:05,440 EXCITING, KIND OF COMING 1281 00:45:05,440 --> 00:45:06,240 TOGETHER. 1282 00:45:06,240 --> 00:45:09,040 ONE IS THE SOURCES OF DATA ARE 1283 00:45:09,040 --> 00:45:10,320 CHANGING AND GROWING. 1284 00:45:10,320 --> 00:45:12,640 AS WE THINK ABOUT, YOU KNOW -- 1285 00:45:12,640 --> 00:45:13,960 DATA IS NO LONGER SOMEONE 1286 00:45:13,960 --> 00:45:15,160 FILLING OUT A SURVEY. 1287 00:45:15,160 --> 00:45:18,120 IT'S THE WATCH ON THEIR HANDS. 1288 00:45:18,120 --> 00:45:21,280 IT'S THE PUMP IN THEIR SIDES. 1289 00:45:21,280 --> 00:45:24,760 OUR IDEA OF WHAT DATA WE HAVE IS 1290 00:45:24,760 --> 00:45:25,760 GROWING EXPONENTIALLY. 1291 00:45:25,760 --> 00:45:27,640 AND THE POTENTIAL FOR THAT DATA 1292 00:45:27,640 --> 00:45:28,480 IS GROWING. 1293 00:45:28,480 --> 00:45:30,680 BUT THEN THAT SORT OF CALLS THE 1294 00:45:30,680 --> 00:45:33,120 SECOND PART, WHAT DO WE DO WITH 1295 00:45:33,120 --> 00:45:34,280 THESE STREAMS AND STREAMS OF 1296 00:45:34,280 --> 00:45:34,480 DATA? 1297 00:45:34,480 --> 00:45:37,280 AND I THINK THIS IS WHERE THE 1298 00:45:37,280 --> 00:45:38,800 ANALYTICS PIECE THANKFULLY IS 1299 00:45:38,800 --> 00:45:41,520 CATCHING UP AND THE MODELS TO 1300 00:45:41,520 --> 00:45:44,160 TRY AND TAKE THIS DATA AND TRY 1301 00:45:44,160 --> 00:45:45,600 TO MAKE SENSE OF IT TO TRY TO 1302 00:45:45,600 --> 00:45:48,960 UNDERSTAND WHAT IT'S TELLING US 1303 00:45:48,960 --> 00:45:50,720 SO WE KNOW THE STORIES COMING 1304 00:45:50,720 --> 00:45:51,600 FROM THIS DATA. 1305 00:45:51,600 --> 00:45:53,040 THOSE TWO THINGS TOGETHER FOR ME 1306 00:45:53,040 --> 00:45:55,360 ARE REALLY EXCITING BUT THEN 1307 00:45:55,360 --> 00:45:56,880 THERE'S THE QUESTION WHAT DO WE 1308 00:45:56,880 --> 00:45:57,760 DO WITH IT? 1309 00:45:57,760 --> 00:45:59,400 AND THESE ARE SOME OF THE 1310 00:45:59,400 --> 00:46:01,120 CONVERSATIONS WE'VE STARTED TO 1311 00:46:01,120 --> 00:46:03,640 HAVE WITH GROUPS, STARTING TO 1312 00:46:03,640 --> 00:46:12,640 THINK ABOUT, OKAYF YOU HAVE THIS 1313 00:46:12,640 --> 00:46:15,600 STREAM OF GLUCOMETER DATA, HOW 1314 00:46:15,600 --> 00:46:17,560 CAN WE DISTILL IT THAT A PATIENT 1315 00:46:17,560 --> 00:46:19,000 IS LIKE, OH, WAIT, THERE'S A 1316 00:46:19,000 --> 00:46:21,400 PROBLEM, I NEED TO DO SOMETHING, 1317 00:46:21,400 --> 00:46:22,400 WHEN A CLINICIAN SEES THIS 1318 00:46:22,400 --> 00:46:24,480 INFORMATION, THAT THEY CAN SEE A 1319 00:46:24,480 --> 00:46:25,760 SIGNAL AND AS A RESEARCHER 1320 00:46:25,760 --> 00:46:33,200 LOOKING A T THIS AGGREGATE DATA 1321 00:46:33,200 --> 00:46:37,560 WHAT CAN WE LEARN FROM IT? 1322 00:46:37,560 --> 00:46:38,480 >>GREAT RESPONSE. 1323 00:46:38,480 --> 00:46:41,960 DAVID, DO YOU WANT TO TAKE IT? 1324 00:46:41,960 --> 00:46:42,440 1325 00:46:42,440 --> 00:46:45,360 >>YEAH, NOW IT'S SUSPENSEFUL. 1326 00:46:45,360 --> 00:46:49,880 SO, I THINK THAT WAS A BRILLIANT 1327 00:46:49,880 --> 00:46:50,280 ANSWER. 1328 00:46:50,280 --> 00:46:57,280 I THINK THE THEME I'M EXPECTING, 1329 00:46:57,280 --> 00:46:59,360 ONE THING I'M THRILLED AND 1330 00:46:59,360 --> 00:47:01,000 WORRIED ABOUT, SAME ROOT CAUSE, 1331 00:47:01,000 --> 00:47:04,840 THE POINT MADE, THE VOLUME OF 1332 00:47:04,840 --> 00:47:05,840 DATA IS EXPLODING, GENERALLY A 1333 00:47:05,840 --> 00:47:10,440 GOOD THING. 1334 00:47:10,440 --> 00:47:11,760 I THINK IT'S GENERALLY BEING 1335 00:47:11,760 --> 00:47:14,160 DIRECTED THROUGH PATHWAYS WE CAN 1336 00:47:14,160 --> 00:47:14,840 ACCESS, NOT JUST EXACERBATING 1337 00:47:14,840 --> 00:47:18,000 THE IDEA OF HOW THE HECK DO I 1338 00:47:18,000 --> 00:47:19,720 INTEGRATE THIS DATA. 1339 00:47:19,720 --> 00:47:20,520 IT'S EXPLODING THROUGH 1340 00:47:20,520 --> 00:47:24,360 FRAMEWORKS THAT WE CAN TAP INTO. 1341 00:47:24,360 --> 00:47:29,040 WHAT WORRIES ME IS TWO THINGS. 1342 00:47:29,040 --> 00:47:31,320 SO, ONE, THE DATA THAT WE'RE ALL 1343 00:47:31,320 --> 00:47:33,400 COLLECTING RIGHT NOW, WE'RE 1344 00:47:33,400 --> 00:47:35,520 ESSENTIALLY JUST -- WE'VE JUMPED 1345 00:47:35,520 --> 00:47:37,480 THE SHARK IN TERMS OF WE'RE THE 1346 00:47:37,480 --> 00:47:41,000 MAIN CONSUMERS OF THAT DATA. 1347 00:47:41,000 --> 00:47:42,320 SO WE'RE BASICALLY BUILDING 1348 00:47:42,320 --> 00:47:46,080 TRAINING DATASETS FOR A.I. NOW. 1349 00:47:46,080 --> 00:47:48,200 WHEN WE THINK ABOUT REGISTRATION 1350 00:47:48,200 --> 00:47:49,400 AND DATASETS, WE'RE ESSENTIALLY 1351 00:47:49,400 --> 00:47:51,360 BUILDING TRAIN SETS FOR A.I. 1352 00:47:51,360 --> 00:47:52,360 THAT TECHNOLOGY IS ADVANCING 1353 00:47:52,360 --> 00:47:54,880 FASTER THAN MOST OF OUR 1354 00:47:54,880 --> 00:47:56,840 GOVERNANCE MODELS. 1355 00:47:56,840 --> 00:47:57,800 EVEN OUR BUSINESS MODELS CAN 1356 00:47:57,800 --> 00:47:59,680 TAKE INTO ACCOUNT. 1357 00:47:59,680 --> 00:48:00,880 TWO, THERE'S A WORRY THERE. 1358 00:48:00,880 --> 00:48:02,920 THAT IT WILL GET AHEAD OF US, 1359 00:48:02,920 --> 00:48:04,600 AND WE'RE ACTUALLY SEEING THIS 1360 00:48:04,600 --> 00:48:06,120 IN THE MEDIA AND OTHER THINGS, 1361 00:48:06,120 --> 00:48:07,560 FOLKS ARE LIKE, OH, WAIT, YOU 1362 00:48:07,560 --> 00:48:08,960 TRAINED YOUR DATA ON ALL THE 1363 00:48:08,960 --> 00:48:09,960 MOVIES I WROTE? 1364 00:48:09,960 --> 00:48:10,600 NOBODY ASKED ME. 1365 00:48:10,600 --> 00:48:14,440 IS IT TOO LATE TO GET THAT BACK? 1366 00:48:14,440 --> 00:48:14,600 YES. 1367 00:48:14,600 --> 00:48:15,520 NEXT TIME LET'S THINK ABOUT IT. 1368 00:48:15,520 --> 00:48:17,000 I DON'T WANT TO SEE THAT HAPPEN 1369 00:48:17,000 --> 00:48:18,840 WITH HEALTH DATA. 1370 00:48:18,840 --> 00:48:20,400 SECOND, WE'VE GIVEN PATIENTS 1371 00:48:20,400 --> 00:48:22,800 TREMENDOUS POWER OVER THEIR DATA 1372 00:48:22,800 --> 00:48:24,440 WROUGHT ANY FORM OF EDUCATION TO 1373 00:48:24,440 --> 00:48:27,680 THE -- WITHOUT ANY FORM OF 1374 00:48:27,680 --> 00:48:29,000 EDUCATION WHAT THAT MEANS, WHO 1375 00:48:29,000 --> 00:48:30,600 YOU SHOULD GIVE IT TO AND WHY 1376 00:48:30,600 --> 00:48:32,000 YOU SHOULD USE IT, ANOTHER PLACE 1377 00:48:32,000 --> 00:48:36,040 THE TECHNOLOGY HAS RUN AHEAD OF 1378 00:48:36,040 --> 00:48:39,120 THE ABILITY TO ACCESS THE DATA. 1379 00:48:39,120 --> 00:48:40,000 THERE'S SMART FOLKS, SOME TRYING 1380 00:48:40,000 --> 00:48:41,560 TO DO THE RIGHT THING, SOME SEE 1381 00:48:41,560 --> 00:48:42,600 AN OPPORTUNITY FOR MONEY. 1382 00:48:42,600 --> 00:48:48,000 AND THEY ARE GROWING TO -- GOIG 1383 00:48:48,000 --> 00:48:49,000 TO THE SAME GROUPS. 1384 00:48:49,000 --> 00:48:51,280 THAT GIVES ME PAUSE, I'M NOT 1385 00:48:51,280 --> 00:48:52,720 SURE HOW ANY OF US CAN DRIVE 1386 00:48:52,720 --> 00:48:53,160 THAT. 1387 00:48:53,160 --> 00:48:55,880 IT HAS TO BE A COLLABORATIVE 1388 00:48:55,880 --> 00:48:56,880 EFFORT, PROBABLY A CONGRESSIONAL 1389 00:48:56,880 --> 00:48:58,040 EFFORT TO PUMP THE BRAKES A 1390 00:48:58,040 --> 00:48:59,040 LITTLE BIT. 1391 00:48:59,040 --> 00:49:03,640 BUT ENDING ON A POSITIVE NOTE, I 1392 00:49:03,640 --> 00:49:05,720 DO THINK THAT THE A.I. 1393 00:49:05,720 --> 00:49:08,920 APPROACHES ARE GOING TO ALLOW US 1394 00:49:08,920 --> 00:49:10,400 TO DO THINGS THAT WERE SIMPLY 1395 00:49:10,400 --> 00:49:11,960 IMPOSSIBLE BECAUSE OF THE VOLUME 1396 00:49:11,960 --> 00:49:13,640 OF DATA, LIKE THERE WEREN'T 1397 00:49:13,640 --> 00:49:14,680 ENOUGH DATA SCIENTISTS. 1398 00:49:14,680 --> 00:49:17,400 SO THE ABILITY TO BE ABLE TO 1399 00:49:17,400 --> 00:49:18,840 START AGGREGATING AND 1400 00:49:18,840 --> 00:49:19,600 INTEGRATING INFORMATION, 1401 00:49:19,600 --> 00:49:20,720 ANSWERING QUESTIONS, THAT ALLOWS 1402 00:49:20,720 --> 00:49:23,320 SOMEONE BEING SEEN IN A RURAL 1403 00:49:23,320 --> 00:49:25,760 HEALTH SETTING, WHO HAS A RARE 1404 00:49:25,760 --> 00:49:27,040 DISEASE, THAT DOCTOR IS NEVER 1405 00:49:27,040 --> 00:49:28,120 GOING TO SEE ANOTHER PATIENT 1406 00:49:28,120 --> 00:49:34,080 LIKE THAT AGAIN TO GET A NUDGE 1407 00:49:34,080 --> 00:49:36,840 FROM AI, THIS IS WHAT YOU'RE 1408 00:49:36,840 --> 00:49:38,800 SUPPOSED TO DO WHEN SOMEONE 1409 00:49:38,800 --> 00:49:39,880 PRESENTS, A LEVELING EFFECT 1410 00:49:39,880 --> 00:49:42,520 BECAUSE A.I. TOOLS ARE NOT 1411 00:49:42,520 --> 00:49:45,120 EXPENSIVE TO DEPLOY. 1412 00:49:45,120 --> 00:49:48,320 I SEE THAT AS POSITIVE. 1413 00:49:48,320 --> 00:49:52,120 ENDING ON A NEGATIVE, THE FLIP 1414 00:49:52,120 --> 00:49:52,680 SIDE IT'S GOING EXACERBATE 1415 00:49:52,680 --> 00:49:53,440 DIVERSITY, EQUITY, AND INCLUSION 1416 00:49:53,440 --> 00:49:54,840 CHALLENGES THAT WE ALREADY HAVE. 1417 00:49:54,840 --> 00:49:56,960 BECAUSE SO MANY OF THESE TOOLS 1418 00:49:56,960 --> 00:49:59,440 ARE BASED ON DATA THAT ARE 1419 00:49:59,440 --> 00:50:01,240 DIGITALLY GENERATED, THAT 1420 00:50:01,240 --> 00:50:03,160 REQUIRE EXPENSIVE CARE SETTINGS 1421 00:50:03,160 --> 00:50:05,040 TO GENERATE THEM IN THE FIRST 1422 00:50:05,040 --> 00:50:08,320 PLACE, EXPENSIVE SMARTPHONES OR 1423 00:50:08,320 --> 00:50:09,440 ACCESS TO BROADBAND INTERNET. 1424 00:50:09,440 --> 00:50:11,080 WE KNOW THE MAJORITY OF OUR 1425 00:50:11,080 --> 00:50:12,880 COUNTRY DOESN'T HAVE ACCESS TO 1426 00:50:12,880 --> 00:50:14,120 THOSE THINGS. 1427 00:50:14,120 --> 00:50:16,000 IT'S NOT 50/50, IT'S THE 1428 00:50:16,000 --> 00:50:17,320 MAJORITY THAT DOESN'T HAVE 1429 00:50:17,320 --> 00:50:19,520 ACCESS ON A RELIABLE BASIS, SO I 1430 00:50:19,520 --> 00:50:21,920 THINK WE'RE GOING TO SEE 1431 00:50:21,920 --> 00:50:22,920 TREMENDOUS BREAKTHROUGHS BUT 1432 00:50:22,920 --> 00:50:24,760 PROBABLY A GENERATION OR TWO OUT 1433 00:50:24,760 --> 00:50:25,880 BEFORE IT'S MORE EVENLY 1434 00:50:25,880 --> 00:50:29,800 DISTRIBUTED. 1435 00:50:29,800 --> 00:50:33,000 1436 00:50:33,000 --> 00:50:33,400 >>DIANE? 1437 00:50:33,400 --> 00:50:37,800 >>I HAVE A BIPOLAR VIEW, ON THE 1438 00:50:37,800 --> 00:50:38,880 ENTHUSIASTIC SIDE POST-COVID, 1439 00:50:38,880 --> 00:50:41,200 WITNESSING THE CHANGES IN 1440 00:50:41,200 --> 00:50:42,160 DECENTRALIZED TRIALS, DIVERSITY, 1441 00:50:42,160 --> 00:50:43,160 YOU KNOW, WE'RE FINALLY GOING TO 1442 00:50:43,160 --> 00:50:46,320 BE IN A POSITION TO REACH PEOPLE 1443 00:50:46,320 --> 00:50:50,280 TO GO INTO TRIALS THAT 1444 00:50:50,280 --> 00:50:52,120 HISTORICALLY, EVEN PEOPLE IN 1445 00:50:52,120 --> 00:50:53,480 RURAL SETTINGS, IT'S HAPPENING, 1446 00:50:53,480 --> 00:50:53,680 RIGHT? 1447 00:50:53,680 --> 00:50:56,640 SO THIS IS A JUNCTURE WHERE BOTH 1448 00:50:56,640 --> 00:50:59,480 MY HAT AS A NEUROSCIENTIST IS 1449 00:50:59,480 --> 00:51:03,800 CONFOUNDED WITH THE EXPERIENCE I 1450 00:51:03,800 --> 00:51:06,240 HAD IN WITNESSING, MY BROTHER 1451 00:51:06,240 --> 00:51:07,560 DIED OF PARKINSON'S AT AGE 59 1452 00:51:07,560 --> 00:51:08,640 LAST YEAR. 1453 00:51:08,640 --> 00:51:10,960 HE WAS A COMPUTER SCIENTIST, BUT 1454 00:51:10,960 --> 00:51:14,680 THERE WAS NO IMPLEMENTATION OF 1455 00:51:14,680 --> 00:51:15,880 HOW DIFFERENT STAKEHOLDERS IN 1456 00:51:15,880 --> 00:51:17,400 HIS ENVIRONMENT COULD 1457 00:51:17,400 --> 00:51:18,280 COMMUNICATE TOGETHER. 1458 00:51:18,280 --> 00:51:21,920 THE REALITY IN TODAY'S SETTING 1459 00:51:21,920 --> 00:51:23,520 DESPITE THE HYPE AND INCREDIBLE 1460 00:51:23,520 --> 00:51:24,320 PROGRESS IN TECHNOLOGY, THE 1461 00:51:24,320 --> 00:51:26,400 REALITY OF WHAT HAS TO HAPPEN 1462 00:51:26,400 --> 00:51:29,360 WITH PATIENTS AND FAMILIES ISN'T 1463 00:51:29,360 --> 00:51:30,440 THERE YET, RIGHT? 1464 00:51:30,440 --> 00:51:32,320 AND WHAT WE DO AT C-PATH FOR 1465 00:51:32,320 --> 00:51:35,160 EVERYTHING WE DO TO BE 1466 00:51:35,160 --> 00:51:36,360 SUCCESSFUL AT ACHIEVING 1467 00:51:36,360 --> 00:51:41,720 REGULATORY ENDORSED DRUG 1468 00:51:41,720 --> 00:51:44,840 DEVELOPMENT TOOLS, BIOMARKERS, 1469 00:51:44,840 --> 00:51:46,600 OUTCOME MEASURES, TOOLS ARE 1470 00:51:46,600 --> 00:51:49,480 POWERFUL BUT WE NEED TO SHARE 1471 00:51:49,480 --> 00:51:50,040 DATA. 1472 00:51:50,040 --> 00:51:53,240 THE PARKINSON'S CONSORTIUM, 1473 00:51:53,240 --> 00:51:56,280 LEADING A PROJECT FOR SMART 1474 00:51:56,280 --> 00:51:59,760 PHONES TO DEVELOP WAYS TO DETECT 1475 00:51:59,760 --> 00:52:05,240 AND MONITOR PROGRESS IN EARLY 1476 00:52:05,240 --> 00:52:06,680 STAGE DISEASE, THAT DATA IS 1477 00:52:06,680 --> 00:52:11,280 BEING USED TO HELP INFORM 1478 00:52:11,280 --> 00:52:11,560 PATIENTS. 1479 00:52:11,560 --> 00:52:13,120 FACETS THEY HAVE NEVER 1480 00:52:13,120 --> 00:52:14,360 UNDERSTOOD, WE'RE MAKING GREAT 1481 00:52:14,360 --> 00:52:15,440 PROGRESS, PATIENTS ARE DRIVING 1482 00:52:15,440 --> 00:52:16,080 THAT CHANGE. 1483 00:52:16,080 --> 00:52:19,040 BUT ON THE OTHER SIDE, INHERENT 1484 00:52:19,040 --> 00:52:22,320 CHALLENGES OF THE ENTIRE FIELD, 1485 00:52:22,320 --> 00:52:24,200 FOR WHATEVER BUSINESS REASONS, 1486 00:52:24,200 --> 00:52:25,280 LEGAL, FINANCIAL, WHATEVER, THE 1487 00:52:25,280 --> 00:52:28,560 ABILITY TO SHARE THIS DATA IS 1488 00:52:28,560 --> 00:52:29,200 INCREDIBLY DIFFICULT. 1489 00:52:29,200 --> 00:52:30,640 BRINGING IN THE TECH PROVIDERS, 1490 00:52:30,640 --> 00:52:32,720 HOW TO GET EVERYBODY ON THE SAME 1491 00:52:32,720 --> 00:52:36,160 PAGE, TO SHARE NOT JUST THE 1492 00:52:36,160 --> 00:52:37,560 WINNING BUT THE CHALLENGES 1493 00:52:37,560 --> 00:52:39,960 BECAUSE THE ISSUES YOU RAISE 1494 00:52:39,960 --> 00:52:42,000 ABOUT INTRAOPERABILITY, HOW DO 1495 00:52:42,000 --> 00:52:44,440 WE HARMONIZE AND WORK WITH 1496 00:52:44,440 --> 00:52:46,520 VOLUMES OF DATA, WE'RE STILL NOT 1497 00:52:46,520 --> 00:52:48,040 SHARING THAT YET, THAT'S SLOWING 1498 00:52:48,040 --> 00:52:48,640 PROGRESS. 1499 00:52:48,640 --> 00:52:51,240 IF WE COULD HELP, AGAIN, UTILIZE 1500 00:52:51,240 --> 00:52:52,320 THE PATIENT VOICE TO DRIVE 1501 00:52:52,320 --> 00:52:55,080 CHANGE FOR INNOVATION AND SHARE 1502 00:52:55,080 --> 00:52:57,360 THE LEARNINGS, AND SUCCESSES AND 1503 00:52:57,360 --> 00:52:59,720 FAILURES, WE'LL MAKE INCREDIBLY 1504 00:52:59,720 --> 00:53:00,960 FAST PROGRESS ACROSS ALL OF 1505 00:53:00,960 --> 00:53:01,960 THESE DISEASES THAT NEED THESE 1506 00:53:01,960 --> 00:53:11,160 TOOLS. 1507 00:53:11,160 --> 00:53:21,200 1508 00:53:23,640 --> 00:53:27,240 >>CAN YOU KEEP ME GOOD ON TIME? 1509 00:53:27,240 --> 00:53:28,600 TWO CLOCKS HAVE TWO TIMES. 1510 00:53:28,600 --> 00:53:30,680 FIRST I WANT TO SAY THAT A.I. IS 1511 00:53:30,680 --> 00:53:33,600 JUST A TOOL. 1512 00:53:33,600 --> 00:53:35,280 AND THAT WE HAVE TO LOOK AT THAT 1513 00:53:35,280 --> 00:53:35,520 WAY. 1514 00:53:35,520 --> 00:53:39,720 IT'S NOT AN END END-ALL, BE-AL, 1515 00:53:39,720 --> 00:53:41,760 IT'S GOING TO HELP US IMPROVE 1516 00:53:41,760 --> 00:53:43,720 THE PROCESS BUT WILL NOT TAKE 1517 00:53:43,720 --> 00:53:44,200 OVER. 1518 00:53:44,200 --> 00:53:47,760 AND THE SECOND THING IS 1519 00:53:47,760 --> 00:53:49,200 EDUCATION AND AWARENESS TO 1520 00:53:49,200 --> 00:53:50,280 PATIENTS AROUND THE DATA. 1521 00:53:50,280 --> 00:53:52,880 AS WE MOVE INTO THIS DIGITAL 1522 00:53:52,880 --> 00:53:53,960 WORLD AND DECENTRALIZE CLINICAL 1523 00:53:53,960 --> 00:53:55,200 TRIALS, PATIENTS ARE GOING TO 1524 00:53:55,200 --> 00:53:59,160 HAVE TO LEARN HOW TO COLLECT 1525 00:53:59,160 --> 00:54:01,320 DATA, KNOW WHY THEY ARE 1526 00:54:01,320 --> 00:54:03,680 COLLECTING IT AND IT HAS TO BE 1527 00:54:03,680 --> 00:54:04,920 CLINICAL GRADE DATA TO WORK WITH 1528 00:54:04,920 --> 00:54:05,320 IT. 1529 00:54:05,320 --> 00:54:06,800 WORKING WITH PATIENTS TO 1530 00:54:06,800 --> 00:54:08,800 ESTABLISH THOSE THINGS IS GOING 1531 00:54:08,800 --> 00:54:10,200 TO BE EXTREMELY IMPORTANT. 1532 00:54:10,200 --> 00:54:14,240 AND WHEN THEY KNOW HOW AND WHY 1533 00:54:14,240 --> 00:54:15,560 THEY WILL TRUST SHARING MORE OF 1534 00:54:15,560 --> 00:54:16,880 THE DATA, SO THAT'S ONE OF THE 1535 00:54:16,880 --> 00:54:18,600 THINGS WE SHOULD THINK ABOUT. 1536 00:54:18,600 --> 00:54:21,000 BUT MOVING ON WHEN TALKING ABOUT 1537 00:54:21,000 --> 00:54:23,560 SHARING DATA, WHAT DO YOU THINK 1538 00:54:23,560 --> 00:54:25,520 THE CORE PRINCIPLES SHOULD -- 1539 00:54:25,520 --> 00:54:27,160 WHAT CORE PRINCIPLES SHOULD 1540 00:54:27,160 --> 00:54:28,040 GUIDE THIS DATA SHARING? 1541 00:54:28,040 --> 00:54:30,440 I HAVE MY OWN OPINIONS BUT I'D 1542 00:54:30,440 --> 00:54:35,360 LOVE TO HEAR FROM THE DIFFERENT 1543 00:54:35,360 --> 00:54:36,120 ORGANIZATIONS HERE. 1544 00:54:36,120 --> 00:54:37,800 ALIZA, DO YOU WANT TO GO FIRST? 1545 00:54:37,800 --> 00:54:41,280 >>SURE, I LOVE THAT WE TALK 1546 00:54:41,280 --> 00:54:46,520 ABOUT -- 1547 00:54:46,520 --> 00:54:47,280 >>MAKING IT FUN. 1548 00:54:47,280 --> 00:54:50,280 >>I LOVE THAT WE'RE TALKING 1549 00:54:50,280 --> 00:54:51,680 ABOUT GUIDING PRINCIPLES AROUND 1550 00:54:51,680 --> 00:54:54,640 DATA SHARING, THERE'S LIKE THIS 1551 00:54:54,640 --> 00:54:55,520 ETHOS, THIS APPROACH. 1552 00:54:55,520 --> 00:54:56,920 I THINK THAT'S SO TELLING OF 1553 00:54:56,920 --> 00:54:59,360 SORT OF HOW WE'RE THINKING ABOUT 1554 00:54:59,360 --> 00:54:59,800 THIS. 1555 00:54:59,800 --> 00:55:01,440 AND I WAS RECENTLY ACTUALLY 1556 00:55:01,440 --> 00:55:03,640 TALKING WITH ONE OF THESE GROUPS 1557 00:55:03,640 --> 00:55:05,160 STARTING TO BUILD THEIR DATA 1558 00:55:05,160 --> 00:55:06,640 GOVERNANCE, AND THAT WAS WHERE 1559 00:55:06,640 --> 00:55:07,800 WE STARTED. 1560 00:55:07,800 --> 00:55:09,760 WHAT ARE THE GUIDING PRINCIPLES? 1561 00:55:09,760 --> 00:55:11,720 HOW ARE WE COMING INTO THIS? 1562 00:55:11,720 --> 00:55:15,680 ARE WE COMING INTO THIS WITH AN 1563 00:55:15,680 --> 00:55:19,320 IDEA THAT THE GOAL HERE IS 1564 00:55:19,320 --> 00:55:21,160 SHARING IS OUR GOAL AND WE WANT 1565 00:55:21,160 --> 00:55:22,560 TO DO WHAT'S POSSIBLE? 1566 00:55:22,560 --> 00:55:24,760 BUT THEN WHERE DO WE NEED TO BE 1567 00:55:24,760 --> 00:55:25,120 CAREFUL? 1568 00:55:25,120 --> 00:55:27,720 WHAT DO WE NEED TO BE THINKING 1569 00:55:27,720 --> 00:55:28,120 ABOUT? 1570 00:55:28,120 --> 00:55:31,680 ESPECIALLY IN THIS RARE DISEASE 1571 00:55:31,680 --> 00:55:34,400 SPACE, NUMBERS ARE SMALL. 1572 00:55:34,400 --> 00:55:36,240 PRIVACY BECOMES A TRUE CONCERN. 1573 00:55:36,240 --> 00:55:39,320 SO HOW DO WE INTEGRATE THAT INTO 1574 00:55:39,320 --> 00:55:43,160 HOW WE'RE THINKING ABOUT DATA 1575 00:55:43,160 --> 00:55:44,800 SHARING? 1576 00:55:44,800 --> 00:55:48,400 >>THAT'S A PHENOMENAL POINT. 1577 00:55:48,400 --> 00:55:50,040 I THINK THE TENSION, AND I'VE 1578 00:55:50,040 --> 00:55:52,120 SEEN THIS ON BOTH SIDES, SO FOR 1579 00:55:52,120 --> 00:55:54,760 THE EARLY PART OF MY CAREER I 1580 00:55:54,760 --> 00:55:57,200 WAS SUPPORTING ACADEMIC RESEARCH 1581 00:55:57,200 --> 00:55:58,160 IN NEURODEVELOPMENTAL DISORDERS, 1582 00:55:58,160 --> 00:56:02,560 AND I WILL NEVER FORGET A PARENT 1583 00:56:02,560 --> 00:56:04,200 PULLING ME ASIDE WHEN I WAS 1584 00:56:04,200 --> 00:56:10,760 ASKING A QUESTION ABOUT CONSENT. 1585 00:56:10,760 --> 00:56:12,480 AND THEY SAID, I DON'T EVEN 1586 00:56:12,480 --> 00:56:15,680 UNDERSTAND WHY WE DO THIS, IF 1587 00:56:15,680 --> 00:56:17,880 YOU TOLD ME THAT THE RESEARCH 1588 00:56:17,880 --> 00:56:19,400 FOR MY CHILD WAS ONLY GOING TO 1589 00:56:19,400 --> 00:56:20,600 BE LOOKED AT BY FOUR SMART 1590 00:56:20,600 --> 00:56:22,480 PEOPLE IN THAT ROOM I WOULD SAY 1591 00:56:22,480 --> 00:56:24,240 FROM A DATA SHARING PERSPECTIVE 1592 00:56:24,240 --> 00:56:25,840 I WOULD SAY I'M NOT INTERESTED. 1593 00:56:25,840 --> 00:56:27,720 I WANT EVERY SMART PERSON WHO 1594 00:56:27,720 --> 00:56:28,960 CAN POTENTIALLY HELP MY CHILD TO 1595 00:56:28,960 --> 00:56:34,120 LOOK AT THIS AND MOVE IT 1596 00:56:34,120 --> 00:56:34,480 FORWARD. 1597 00:56:34,480 --> 00:56:37,040 AND THAT WILL ALWAYS STAY WITH 1598 00:56:37,040 --> 00:56:42,560 ME AS THE NATURAL TENSION 1599 00:56:42,560 --> 00:56:43,640 BETWEEN PRIVACY AND THE 1600 00:56:43,640 --> 00:56:44,720 WILLINGNESS FOR A LOT OF 1601 00:56:44,720 --> 00:56:48,440 FAMILIES TO SAY I DON'T WANT 1602 00:56:48,440 --> 00:56:49,200 ARTIFICIAL RESTRICTION BECAUSE I 1603 00:56:49,200 --> 00:56:51,160 FORGOT TO CHECK A BOX OR 1604 00:56:51,160 --> 00:56:52,480 SOMETHING WASN'T EXPLAINED, NOW 1605 00:56:52,480 --> 00:56:54,560 SMART PEOPLE CAN'T TRY TO 1606 00:56:54,560 --> 00:56:55,800 ADVANCE THIS FIELD. 1607 00:56:55,800 --> 00:56:58,720 OTHER FOLKS ARE AT THE OTHER END 1608 00:56:58,720 --> 00:57:00,040 OF THE SPECTRUM, SAYING I WANT 1609 00:57:00,040 --> 00:57:01,680 TO MAKE SURE IT'S ONLY SEEN BY 1610 00:57:01,680 --> 00:57:06,800 ONE PERSON FOR THIS ONE THING. 1611 00:57:06,800 --> 00:57:08,600 I THINK THE REQUIREMENTS FOR US 1612 00:57:08,600 --> 00:57:11,400 TO MAKE ADVANCES ARE GOING TO BE 1613 00:57:11,400 --> 00:57:13,160 SOMETHING THAT LOOKS MORE LIKE 1614 00:57:13,160 --> 00:57:14,920 BROAD CONSENT. 1615 00:57:14,920 --> 00:57:17,640 FROM AN EDUCATION PERSPECTIVE, 1616 00:57:17,640 --> 00:57:20,600 IT'S REALLY ON THE ONUS OF ALL 1617 00:57:20,600 --> 00:57:22,680 OF US TO EXPLAIN, YOU KNOW, HOW 1618 00:57:22,680 --> 00:57:26,920 IS IT NOT SCARY, HOW ARE THE 1619 00:57:26,920 --> 00:57:31,680 GOVERNANCE MODELS IN PLACE, 1620 00:57:31,680 --> 00:57:34,560 BECAUSE DATA FLUIDITY IS SO 1621 00:57:34,560 --> 00:57:38,640 GREAT, BARRIERS HAVE BEEN 1622 00:57:38,640 --> 00:57:38,880 REDUCED. 1623 00:57:38,880 --> 00:57:44,120 LOOK AT THE WORK C-PATH IS DOING 1624 00:57:44,120 --> 00:57:46,080 WITH DATA THAT WAS LOCKED AWAY 1625 00:57:46,080 --> 00:57:47,520 FOR A VERY LONG TIME. 1626 00:57:47,520 --> 00:57:48,640 YES, THERE'S A CHALLENGE 1627 00:57:48,640 --> 00:57:50,680 BRINGING THAT TOGETHER. 1628 00:57:50,680 --> 00:57:51,360 YES, THAT'S PRIMARILY 1629 00:57:51,360 --> 00:57:52,520 DE-IDENTIFIED DATA SO YOU'RE NOT 1630 00:57:52,520 --> 00:57:53,960 GOING BACK TO FOLKS BUT THAT 1631 00:57:53,960 --> 00:57:56,160 MODEL IS GOING TO FLIP TO WHERE 1632 00:57:56,160 --> 00:57:57,920 WE'RE GOING TO BE SITTING ON 1633 00:57:57,920 --> 00:57:58,880 LARGE REPOSITORIES OF IDENTIFIED 1634 00:57:58,880 --> 00:58:01,760 PATIENT DATA THAT WAS CONSENTED 1635 00:58:01,760 --> 00:58:03,480 FOR ONE REASON AND IMPOSSIBLE TO 1636 00:58:03,480 --> 00:58:05,320 GO BACK AND CONSENT THEM FOR 1637 00:58:05,320 --> 00:58:06,880 ANOTHER VALID REASON. 1638 00:58:06,880 --> 00:58:08,840 SO I THINK THAT TO ME IS REALLY 1639 00:58:08,840 --> 00:58:11,240 WHERE THE CHALLENGE IS GOING TO 1640 00:58:11,240 --> 00:58:15,200 BE IN TERMS OF WORKING WITH 1641 00:58:15,200 --> 00:58:16,280 PARENTS AND PATIENTS TO SAY, 1642 00:58:16,280 --> 00:58:18,480 THIS IS WHY WE'RE ASKING FOR 1643 00:58:18,480 --> 00:58:19,800 MANY A BROADER PURVIEW ON WHO 1644 00:58:19,800 --> 00:58:22,200 MIGHT BE ABLE TO CONTRIBUTE TO 1645 00:58:22,200 --> 00:58:24,240 YOUR CARE OR TO THIS RESEARCH. 1646 00:58:24,240 --> 00:58:26,440 AND LET'S HAVE THAT QUESTION UP 1647 00:58:26,440 --> 00:58:27,440 FRONT BECAUSE WE DON'T GET 1648 00:58:27,440 --> 00:58:31,680 ANOTHER CHANCE TO HAVE THAT 1649 00:58:31,680 --> 00:58:32,680 CONVERSATION ON. 1650 00:58:32,680 --> 00:58:34,560 WE'VE SEEN SO MANY AMAZING 1651 00:58:34,560 --> 00:58:35,880 OPPORTUNITIES FROM LINKING DATA 1652 00:58:35,880 --> 00:58:37,680 OR BRINGING IT FORWARD, AND NOW 1653 00:58:37,680 --> 00:58:39,360 THE PRIMARY REASON WE CAN'T DO 1654 00:58:39,360 --> 00:58:41,240 IT BECAUSE WE DIDN'T THINK ABOUT 1655 00:58:41,240 --> 00:58:42,760 CONSENTING FOR THAT AND CAN'T GO 1656 00:58:42,760 --> 00:58:45,520 BACK AND FIND THESE FOLKS. 1657 00:58:45,520 --> 00:58:46,640 >>I THINK DYNAMIC CONSENT IS 1658 00:58:46,640 --> 00:58:49,640 SOMETHING WE NEED TO LOOK INTO. 1659 00:58:49,640 --> 00:58:52,480 WE MAY TACKLE THAT IF WE HAVE 1660 00:58:52,480 --> 00:58:52,680 TIME. 1661 00:58:52,680 --> 00:58:57,320 DIANE, WHAT ARE YOUR THOUGHTS ON 1662 00:58:57,320 --> 00:58:57,680 THE QUESTION? 1663 00:58:57,680 --> 00:58:59,240 >>YES, ECHOING THE IMPORTANCE 1664 00:58:59,240 --> 00:59:00,480 OF CONSENT, ONE OF THE 1665 00:59:00,480 --> 00:59:01,680 CHALLENGES AGAIN WE'VE HAD OVER 1666 00:59:01,680 --> 00:59:04,240 THE YEARS AT C MATH IS THE 1667 00:59:04,240 --> 00:59:05,240 NEGOTIATION OF RECONSENTING. 1668 00:59:05,240 --> 00:59:09,360 PEOPLE DON'T UNDERSTAND HOW 1669 00:59:09,360 --> 00:59:11,120 CHALLENGING THAT IS, ALMOST 1670 00:59:11,120 --> 00:59:13,480 IMPOSSIBLE, RIGHT? 1671 00:59:13,480 --> 00:59:14,280 CONGRATULATIONS TO PENNY DACKS 1672 00:59:14,280 --> 00:59:16,360 WHO IS THERE WHO WORKS WITH US 1673 00:59:16,360 --> 00:59:18,120 IN THE ALZHEIMER'S CONSORTIUM 1674 00:59:18,120 --> 00:59:20,400 YEARS AGO TO DEVELOP A 1675 00:59:20,400 --> 00:59:21,680 PUBLICATION ON SOME TYPE OF 1676 00:59:21,680 --> 00:59:23,600 UNIVERSAL CONSENT THAT COULD BE 1677 00:59:23,600 --> 00:59:25,320 UTILIZED FOR DEMENTIA STUDIES, 1678 00:59:25,320 --> 00:59:25,680 RIGHT? 1679 00:59:25,680 --> 00:59:27,280 BECAUSE THE LANGUAGE IS REALLY 1680 00:59:27,280 --> 00:59:30,680 CRITICAL AND PEOPLE TELL ME THAT 1681 00:59:30,680 --> 00:59:32,240 THE TYPE OF CONSENT THAT IS 1682 00:59:32,240 --> 00:59:33,640 STILL USED TODAY FOR MANY TRIALS 1683 00:59:33,640 --> 00:59:36,160 IS VERY DIFFICULT TO UNDERSTAND. 1684 00:59:36,160 --> 00:59:38,480 LET ME MAKE ONE POINT. 1685 00:59:38,480 --> 00:59:39,560 PARTICULARLY FOR THIS MEETING 1686 00:59:39,560 --> 00:59:44,160 AND FORUM, I WISH I WAS THERE, 1687 00:59:44,160 --> 00:59:45,360 THE ROLE OF NON-PROFITS IN 1688 00:59:45,360 --> 00:59:46,680 DRIVING CHANGE IS NOT 1689 00:59:46,680 --> 00:59:47,680 APPRECIATED ENOUGH. 1690 00:59:47,680 --> 00:59:49,640 WE WORK WITH EIGHT NON-PROFIT 1691 00:59:49,640 --> 00:59:51,840 ORGANIZATIONS FROM AROUND THE 1692 00:59:51,840 --> 00:59:53,040 WORLD IN PARKINSON'S, AND 1693 00:59:53,040 --> 00:59:55,120 TRANSFORMATION IS HAPPENING 1694 00:59:55,120 --> 00:59:56,800 THANKS TO PARTNERS LIKE THE 1695 00:59:56,800 --> 00:59:58,880 MICHAEL J. FOX FOUNDATION. 1696 00:59:58,880 --> 01:00:00,440 IN THE FUNDS THEY ARE SO 1697 01:00:00,440 --> 01:00:02,560 GENEROUS TO PROVIDE TO 1698 01:00:02,560 --> 01:00:04,640 RESEARCHERS, IT'S MORE AND MORE 1699 01:00:04,640 --> 01:00:06,400 COMMON NOW THAT IN ORDER TO 1700 01:00:06,400 --> 01:00:07,920 RECEIVE AND AGREE TO RECEIVE 1701 01:00:07,920 --> 01:00:09,680 FUNDING, THAT ONE HAS TO AGREE 1702 01:00:09,680 --> 01:00:11,080 TO SHARE THE DATA, RIGHT? 1703 01:00:11,080 --> 01:00:14,280 AND TO HAVE THE CONSENT WRITTEN 1704 01:00:14,280 --> 01:00:15,800 IN WAYS THAT UP FRONT YOU'RE NOT 1705 01:00:15,800 --> 01:00:17,760 GOING TO HAVE TO GO BACK AND 1706 01:00:17,760 --> 01:00:18,520 WORRY ABOUT RECONSENT BECAUSE 1707 01:00:18,520 --> 01:00:20,920 ALL OF THAT IS AGREED UPON UP 1708 01:00:20,920 --> 01:00:21,360 FRONT. 1709 01:00:21,360 --> 01:00:22,560 CONDITIONAL ON THE FUNDING, 1710 01:00:22,560 --> 01:00:22,920 RIGHT? 1711 01:00:22,920 --> 01:00:24,760 JUST LIKE NIH IS DOING AROUND 1712 01:00:24,760 --> 01:00:25,560 OPEN DATA SHARING. 1713 01:00:25,560 --> 01:00:27,120 THIS IS THE WORLD THAT'S GOING 1714 01:00:27,120 --> 01:00:28,840 TO HAPPEN GOING FORWARD. 1715 01:00:28,840 --> 01:00:31,000 WE HAVE TO FIGURE OUT GOVERNANCE 1716 01:00:31,000 --> 01:00:33,560 MODELS AND PRIVACY AND POLICY 1717 01:00:33,560 --> 01:00:36,920 RULES THAT WOULD HELP AVOID 1718 01:00:36,920 --> 01:00:39,040 MONETIZING DATA OR CONCERNS THAT 1719 01:00:39,040 --> 01:00:41,760 PEOPLE HAVE, OBVIOUSLY, AROUND 1720 01:00:41,760 --> 01:00:42,560 PATIENT PRIVACY. 1721 01:00:42,560 --> 01:00:45,040 I THINK CHANGE IS HERE BUT 1722 01:00:45,040 --> 01:00:46,120 CANNOT EMPHASIZE HOW IMPORTANT 1723 01:00:46,120 --> 01:00:48,320 IT IS FOR NON-PROFITS TO BE 1724 01:00:48,320 --> 01:00:50,320 FULLY ENGAGED DRIVING THIS 1725 01:00:50,320 --> 01:00:50,520 CHANGE. 1726 01:00:50,520 --> 01:00:53,160 >>AND I THINK IT'S EXTREMELY 1727 01:00:53,160 --> 01:00:57,080 IMPORTANT FOR NON-PROFITS NOWED 1728 01:00:57,080 --> 01:00:57,720 -- 1729 01:00:57,720 --> 01:00:59,520 NOW TO EDUCATE THEMSELVES AND 1730 01:00:59,520 --> 01:01:01,160 LOOK AT BUSINESS MODEL OF HEALTH 1731 01:01:01,160 --> 01:01:02,240 CARE AND HOW THAT WORKS. 1732 01:01:02,240 --> 01:01:04,000 WE HAVE SEVEN MINUTES LEFT. 1733 01:01:04,000 --> 01:01:05,400 WE'RE GOING TO CUT THIS DOWN. 1734 01:01:05,400 --> 01:01:08,920 ONE THING I WOULD LIKE TO SAY, 1735 01:01:08,920 --> 01:01:10,680 YOU KNOW, SHARING THE BENEFITS 1736 01:01:10,680 --> 01:01:11,320 WITH PATIENTS. 1737 01:01:11,320 --> 01:01:13,400 RIGHT NOW WE HAVE PEOPLE 1738 01:01:13,400 --> 01:01:15,480 PARTICIPATING IN CLINICAL 1739 01:01:15,480 --> 01:01:15,880 TRIALS. 1740 01:01:15,880 --> 01:01:17,040 I'VE OFTEN SAID IF WE COULD 1741 01:01:17,040 --> 01:01:18,680 COLLECT DATA FROM TRIALS AND 1742 01:01:18,680 --> 01:01:20,960 STUDIES I'VE PARTICIPATED IN WE 1743 01:01:20,960 --> 01:01:22,920 WOULD HAVE A HUGE AMAZING 1744 01:01:22,920 --> 01:01:25,120 HOLISTIC VIEW OF MYSELF. 1745 01:01:25,120 --> 01:01:27,640 BUT THAT'S NOT FULLY SHARED AT 1746 01:01:27,640 --> 01:01:28,400 THIS MOMENT. 1747 01:01:28,400 --> 01:01:29,960 SO, WHAT ARE YOUR THOUGHTS AND 1748 01:01:29,960 --> 01:01:32,680 WHERE DO YOU SEE THIS GOING ON 1749 01:01:32,680 --> 01:01:35,600 SHARING SOME OF THESE ACTUAL 1750 01:01:35,600 --> 01:01:38,800 RESULTSES OR REPORTS WITH 1751 01:01:38,800 --> 01:01:40,000 PATIENTS, OR THE DATA? 1752 01:01:40,000 --> 01:01:42,040 >>I CAN LEAD THIS ONE OFF. 1753 01:01:42,040 --> 01:01:47,000 I DO A LOT OF THIS NOW IN MY DAY 1754 01:01:47,000 --> 01:01:47,160 JOB. 1755 01:01:47,160 --> 01:01:50,840 I THINK WHEN WE USED TO PLAN OUT 1756 01:01:50,840 --> 01:01:53,600 PATIENT REGISTRIES AND PATIENT 1757 01:01:53,600 --> 01:01:54,880 DATA INITIATIVES, WE WOULD SPEND 1758 01:01:54,880 --> 01:01:56,320 A LOT OF TIME TALKING ABOUT WHAT 1759 01:01:56,320 --> 01:01:57,640 ARE THE SPECIFIC DATA ELEMENTS 1760 01:01:57,640 --> 01:02:00,560 THAT WE WANTED TO CAPTURE. 1761 01:02:00,560 --> 01:02:02,200 THAT'S STILL PART BUT NOW THE 1762 01:02:02,200 --> 01:02:04,200 MAJORITY OF PLANNING GOES INTO 1763 01:02:04,200 --> 01:02:05,960 WHAT IS THE GIVE-BACK TO THE 1764 01:02:05,960 --> 01:02:06,400 PARTICIPANT? 1765 01:02:06,400 --> 01:02:09,000 IF WE'RE GOING TO ASK FOR ALL 1766 01:02:09,000 --> 01:02:10,640 THIS INFORMATION CAN WE 1767 01:02:10,640 --> 01:02:13,840 SUMMARIZE IT? 1768 01:02:13,840 --> 01:02:15,960 CAN WE CREATE AN EMERGENCY PANEL 1769 01:02:15,960 --> 01:02:17,480 THAT SAYS I HAVE A RARE DISEASE, 1770 01:02:17,480 --> 01:02:20,080 AND YOU NEED TO KNOW THIS ABOUT 1771 01:02:20,080 --> 01:02:22,400 ME AND MAKE SURE THAT CAN BE 1772 01:02:22,400 --> 01:02:22,720 PRINTED. 1773 01:02:22,720 --> 01:02:24,600 EVEN SIMPLE THINGS LIKE THAT 1774 01:02:24,600 --> 01:02:25,240 THAT PROVIDE REAL TANGIBLE 1775 01:02:25,240 --> 01:02:26,720 BENEFIT BACK TO THE PARTICIPANT 1776 01:02:26,720 --> 01:02:28,640 AS A WAY TO SAY THANK YOU FOR 1777 01:02:28,640 --> 01:02:29,760 SHARING THIS INFORMATION WITH 1778 01:02:29,760 --> 01:02:33,440 ME, HERE'S WHAT I WAS ABLE TO 1779 01:02:33,440 --> 01:02:34,640 LOOK AT IT. 1780 01:02:34,640 --> 01:02:38,960 THE RESEARCH FOUNDATION DOES A 1781 01:02:38,960 --> 01:02:42,320 GLORIOUS JOB WITH THEIR -- WITH 1782 01:02:42,320 --> 01:02:45,960 THEIR INITIATIVE IN TERMS OF -- 1783 01:02:45,960 --> 01:02:52,720 SUSAN G. KOMEN AS WELL, TO WHERE 1784 01:02:52,720 --> 01:02:54,360 THEY ARE BRINGING TOGETHER YOUR 1785 01:02:54,360 --> 01:02:56,120 CLINICAL RECORDS, RUNNING A 1786 01:02:56,120 --> 01:02:59,960 NOVEL ASSAY ON YOU. 1787 01:02:59,960 --> 01:03:01,400 THEY ARE GETTING 1788 01:03:01,400 --> 01:03:03,560 PATIENT-REPORTED DATA. 1789 01:03:03,560 --> 01:03:04,640 IN THE DISPARATE POOLS, THERE'S 1790 01:03:04,640 --> 01:03:06,400 SOME INTERESTING STUFF THERE BUT 1791 01:03:06,400 --> 01:03:07,360 IT'S DIFFICULT FOR THE 1792 01:03:07,360 --> 01:03:08,800 PARTICIPANT TO UNDERSTAND WHAT 1793 01:03:08,800 --> 01:03:11,640 THE HECK IS ALL THIS FOR. 1794 01:03:11,640 --> 01:03:15,240 AND IT WAS -- PART OF THAT 1795 01:03:15,240 --> 01:03:17,440 PROTOCOL TO MAKE SURE WE 1796 01:03:17,440 --> 01:03:18,640 SUMMARIZE WHAT WE'VE LEARNED TO 1797 01:03:18,640 --> 01:03:20,200 HAVE A BETTER CONVERSATION WITH 1798 01:03:20,200 --> 01:03:21,800 THE CARE PEOPLE. 1799 01:03:21,800 --> 01:03:23,120 WE DID THIS CLIA-APPROVED TEST, 1800 01:03:23,120 --> 01:03:24,040 LEARNED FROM THE PATIENT, TALKED 1801 01:03:24,040 --> 01:03:25,960 ABOUT THIS FROM THE MEDICAL 1802 01:03:25,960 --> 01:03:28,440 RECORDS, THIS SHOULD BE WHAT YOU 1803 01:03:28,440 --> 01:03:29,920 DESCRIBES, WHAT YOU SHOULD BE 1804 01:03:29,920 --> 01:03:32,640 DISCUSSING NEXT TIME. 1805 01:03:32,640 --> 01:03:37,560 THAT SHIFT IS NOW PERSISTENT, 1806 01:03:37,560 --> 01:03:40,200 AND THAT'S -- IT IS ALSO WHAT 1807 01:03:40,200 --> 01:03:42,360 MAKES ME WORRIED ABOUT FOLKS 1808 01:03:42,360 --> 01:03:44,240 DANGLING, GIVE ME YOUR DATA AND 1809 01:03:44,240 --> 01:03:47,520 I'LL SUMMARIZE. 1810 01:03:47,520 --> 01:03:48,600 TAKE A LEADERSHIP ON THAT. 1811 01:03:48,600 --> 01:03:49,800 >>I WOULD LOVE TO SEE THAT 1812 01:03:49,800 --> 01:03:52,640 INFORMATION GO BACK TO MY FIRST 1813 01:03:52,640 --> 01:03:55,240 TEAM BEFORE IT COMES BACK TO ME. 1814 01:03:55,240 --> 01:04:01,920 ALIZ SARKS, -- ALISA, DO YOU HE 1815 01:04:01,920 --> 01:04:02,440 ANY COMMENTS? 1816 01:04:02,440 --> 01:04:02,680 >>SURE. 1817 01:04:02,680 --> 01:04:06,680 ONE THING I LOVE ABOUT THE WAY 1818 01:04:06,680 --> 01:04:10,320 THAT THE PLATFORM WORKS IS IN 1819 01:04:10,320 --> 01:04:13,240 REAL TIME, AS SOON AS YOU ENTER 1820 01:04:13,240 --> 01:04:15,000 DATA, NOT ONLY ARE YOU ABLE TO 1821 01:04:15,000 --> 01:04:17,920 SEE YOUR DATA BUT YOU SEE YOUR 1822 01:04:17,920 --> 01:04:22,040 DATA AND EVERYBODY ELSE'S. 1823 01:04:22,040 --> 01:04:25,320 SO IT GIVES YOU A SENSE TO 1824 01:04:25,320 --> 01:04:26,600 REALLY START TO UNDERSTAND HOW 1825 01:04:26,600 --> 01:04:29,160 YOU FIT INTO THE WIDER GROUP OF 1826 01:04:29,160 --> 01:04:31,560 PEOPLE WHO ARE CONTRIBUTING AND 1827 01:04:31,560 --> 01:04:33,320 TO SEE YOUR SPACE, TO SEE HOW 1828 01:04:33,320 --> 01:04:35,920 YOUR DATA IS CONTRIBUTING TO 1829 01:04:35,920 --> 01:04:36,360 THAT STORY. 1830 01:04:36,360 --> 01:04:38,680 >>AND DIANA, LAST COMMENT FROM 1831 01:04:38,680 --> 01:04:38,840 YOU? 1832 01:04:38,840 --> 01:04:40,320 >>YES, I'LL BE BRIEF. 1833 01:04:40,320 --> 01:04:42,800 TWO WEEKS AGO AT THE WORLD 1834 01:04:42,800 --> 01:04:44,000 PARKINSON'S CONGRESS IN 1835 01:04:44,000 --> 01:04:45,120 BARCELONA, I WAS UNABLE TO 1836 01:04:45,120 --> 01:04:48,520 TRAVEL THIS YEAR BUT ONE OF THE 1837 01:04:48,520 --> 01:04:51,360 MOST UNIQUE FORUMS IS BRINGING 1838 01:04:51,360 --> 01:04:52,240 PATIENT COMMUNITY TOGETHER 1839 01:04:52,240 --> 01:04:53,320 EXPERT RESEARCHERS FROM AROUND 1840 01:04:53,320 --> 01:04:54,240 THE WORLD. 1841 01:04:54,240 --> 01:04:57,600 IN THAT FORUM THERE IS A WAY TO 1842 01:04:57,600 --> 01:05:00,320 SHARE INFORMATION IN WAYS THAT 1843 01:05:00,320 --> 01:05:03,480 HAVE BEEN TRADITIONALLY 1844 01:05:03,480 --> 01:05:05,480 DIFFICULT AND NEED 1845 01:05:05,480 --> 01:05:07,560 INFRASTRUCTURES TO ALLOW HELPING 1846 01:05:07,560 --> 01:05:09,440 THE PATIENTS UNDERSTAND WHAT IS 1847 01:05:09,440 --> 01:05:10,720 BEING COLLECTED AND HOW TO 1848 01:05:10,720 --> 01:05:12,600 INTERPRET THIS KIND OF DATA, AND 1849 01:05:12,600 --> 01:05:15,440 FOR ME AS WE CONTINUE TO WATCH 1850 01:05:15,440 --> 01:05:19,800 WHAT HAPPENS IN TRANSFORMING 1851 01:05:19,800 --> 01:05:20,440 THERAPEUTIC DEVELOPMENT FOR 1852 01:05:20,440 --> 01:05:22,880 APPROVALS OF DRUGS THAT ARE 1853 01:05:22,880 --> 01:05:24,520 DISEASE MODIFYING, WE NEED TO 1854 01:05:24,520 --> 01:05:25,520 EDUCATE ON RESILIENCE, WHAT THEY 1855 01:05:25,520 --> 01:05:26,840 CAN DO IN THEIR DAILY LIVES TO 1856 01:05:26,840 --> 01:05:28,560 HELP IMPROVE THE QUALITY OF 1857 01:05:28,560 --> 01:05:35,240 THEIR LIVES NOW WHILE THERAPIES 1858 01:05:35,240 --> 01:05:37,240 ARE UNDER DEVELOPMENT AND SHARED 1859 01:05:37,240 --> 01:05:38,560 IN DIFFERENT WAYS. 1860 01:05:38,560 --> 01:05:39,840 PATIENT VOICE DATA IS STILL 1861 01:05:39,840 --> 01:05:40,840 SOMEWHAT NOVEL, HOW DO WE SHARE 1862 01:05:40,840 --> 01:05:42,920 THAT AND BRING THAT TOGETHER 1863 01:05:42,920 --> 01:05:45,040 ACROSS DIFFERENT GROUPS DOING 1864 01:05:45,040 --> 01:05:45,960 THIS. 1865 01:05:45,960 --> 01:05:47,520 IT'S HAPPENING NOW. 1866 01:05:47,520 --> 01:05:49,080 I CONGRATULATE MY COLLEAGUES AT 1867 01:05:49,080 --> 01:05:51,560 THE MICHAEL J. FOX FOUNDATION, 1868 01:05:51,560 --> 01:05:53,120 TRANSFORMING HOW TO BRING THIS 1869 01:05:53,120 --> 01:05:53,760 INFORMATION TOGETHER IN 1870 01:05:53,760 --> 01:05:55,320 PARKINSON'S FROM AROUND THE 1871 01:05:55,320 --> 01:05:56,320 WORLD. 1872 01:05:56,320 --> 01:05:57,960 THE TIMING IS NOW. 1873 01:05:57,960 --> 01:05:59,760 REALLY FANTASTIC FORUM TODAY TO 1874 01:05:59,760 --> 01:06:01,960 HEAR THESE TOPICS DISCUSSED IN 1875 01:06:01,960 --> 01:06:03,400 SUCH A DYNAMIC WAY. 1876 01:06:03,400 --> 01:06:03,720 THANKS. 1877 01:06:03,720 --> 01:06:06,680 >>I WANT TO THANK MY PANELISTS 1878 01:06:06,680 --> 01:06:09,000 FOR BEING HERE AND MY THOUGHTS 1879 01:06:09,000 --> 01:06:11,640 ON THIS REALLY, ONE OF THE 1880 01:06:11,640 --> 01:06:13,720 ORGANIZATIONS I WORK WITH, OUR 1881 01:06:13,720 --> 01:06:16,240 SLOGAN IS NO AGGREGATION WITHOUT 1882 01:06:16,240 --> 01:06:16,600 REPRESENTATION. 1883 01:06:16,600 --> 01:06:18,960 THAT'S IN REGARD TO THE DATA. 1884 01:06:18,960 --> 01:06:26,520 WE HAVE ALSO COME UP WITH SEVEN 1885 01:06:26,520 --> 01:06:27,720 COLLECTIVE GUIDELINES, SEVEN 1886 01:06:27,720 --> 01:06:28,840 GUIDELINES TO COLLECTIVE DIGITAL 1887 01:06:28,840 --> 01:06:29,320 RIGHTS. 1888 01:06:29,320 --> 01:06:36,600 IF YOU GO TO 1889 01:06:36,600 --> 01:06:37,680 LIKECOLLECTIVE.ORG/TRUST WE'RE 1890 01:06:37,680 --> 01:06:39,120 WORKING WITH TECH COMPANIES, HOW 1891 01:06:39,120 --> 01:06:41,520 TO WE USE THE DATA AND MONITOR 1892 01:06:41,520 --> 01:06:43,080 IN THE MEANTIME. 1893 01:06:43,080 --> 01:06:44,720 IT'S A HUGE TOPIC. 1894 01:06:44,720 --> 01:06:47,640 WE DIDN'T GET TO OUR CONSENT AND 1895 01:06:47,640 --> 01:06:48,000 OTHER THINGS. 1896 01:06:48,000 --> 01:06:50,200 I DON'T KNOW IF WE HAVE TIME FOR 1897 01:06:50,200 --> 01:06:51,840 QUESTIONS. 1898 01:06:51,840 --> 01:06:54,040 >>WE HAVE TIME FOR A COUPLE 1899 01:06:54,040 --> 01:06:54,280 QUESTIONS. 1900 01:06:54,280 --> 01:06:55,520 >>IF ANYONE DOES. 1901 01:06:55,520 --> 01:06:59,280 I SEE ONE OVER THERE. 1902 01:06:59,280 --> 01:07:05,160 WE'VE GOT BOTH SIDES. 1903 01:07:05,160 --> 01:07:06,560 >>I'M SO EXCITED ABOUT WHAT ALL 1904 01:07:06,560 --> 01:07:09,120 OF THIS IS GOING TO MEAN FOR THE 1905 01:07:09,120 --> 01:07:11,600 FIELD OF BIOMEDICAL RESEARCH. 1906 01:07:11,600 --> 01:07:13,160 I ALSO WORRY WE DON'T ALWAYS 1907 01:07:13,160 --> 01:07:14,560 TALK ABOUT THE RISKS. 1908 01:07:14,560 --> 01:07:17,960 WE TALK ABOUT RISK OF PRIVACY IN 1909 01:07:17,960 --> 01:07:18,960 THE FIELD OF DEMENTIA, ONE OF 1910 01:07:18,960 --> 01:07:22,240 THE THINGS WE'VE HEARD OF IS 1911 01:07:22,240 --> 01:07:24,760 PEOPLE WHO GET MAYBE -- A FAMILY 1912 01:07:24,760 --> 01:07:26,400 WHO IS OPEN ABOUT THE GENETIC 1913 01:07:26,400 --> 01:07:29,040 RISK OF DEMENTIA IN THEIR FAMILY 1914 01:07:29,040 --> 01:07:32,080 CAN SOMETIMES LOSE THEIR JOB. 1915 01:07:32,080 --> 01:07:35,480 WE TALK ABOUT TRYING TO GET INTO 1916 01:07:35,480 --> 01:07:36,480 UNDERSERVED POPULATIONS AND EARN 1917 01:07:36,480 --> 01:07:38,760 THEIR TRUST BUT I DON'T HEAR AS 1918 01:07:38,760 --> 01:07:40,960 MUCH CONVERSATION HOW DO WE 1919 01:07:40,960 --> 01:07:42,400 DESERVE THEIR TRUST. 1920 01:07:42,400 --> 01:07:44,480 ONE SPECIFIC EXAMPLE AS WE 1921 01:07:44,480 --> 01:07:49,520 CREATE ALGORITHMS AROUND HOW TO 1922 01:07:49,520 --> 01:07:49,760 PRE- 1923 01:07:49,760 --> 01:07:52,360 PREDICT WHO IS GOING TO DEVELOP 1924 01:07:52,360 --> 01:07:54,760 DEMENTIA TO FIND THEM EARLY, HOW 1925 01:07:54,760 --> 01:07:56,640 DO WE MAKE SURE INSURANCE 1926 01:07:56,640 --> 01:07:58,320 COMPANIES ARE NOT BLOCKING 1927 01:07:58,320 --> 01:08:00,120 INSURANCE OF LONG-TERM CARE AND 1928 01:08:00,120 --> 01:08:01,320 HEALTH INSURANCE AND DISABILITY 1929 01:08:01,320 --> 01:08:02,400 INSURANCE FOR PEOPLE WHO DON'T 1930 01:08:02,400 --> 01:08:05,920 EVEN KNOW THAT THEY ARE AT RISK 1931 01:08:05,920 --> 01:08:10,160 OF DEMENTIA, AND SO FROM YOUR 1932 01:08:10,160 --> 01:08:10,960 PERSPECTIVES THINKING ABOUT 1933 01:08:10,960 --> 01:08:19,400 PATIENT DATA, STEP ASIDE FROM 1934 01:08:19,400 --> 01:08:21,040 BENEFITS, WHAT ARE THE RISKS AND 1935 01:08:21,040 --> 01:08:23,440 POLICIES IN PLACE TO GUARD 1936 01:08:23,440 --> 01:08:23,880 AGAINST THOSE RISKS? 1937 01:08:23,880 --> 01:08:26,880 >>I HAVE A TON OF RISK THAT WE 1938 01:08:26,880 --> 01:08:27,240 CAN DISCUSS. 1939 01:08:27,240 --> 01:08:29,680 I DON'T KNOW ABOUT YOU. 1940 01:08:29,680 --> 01:08:34,600 EVEN JUST THE RISK A THIRD 1941 01:08:34,600 --> 01:08:37,200 PARTY, HHS ISSUES A BULLETIN 1942 01:08:37,200 --> 01:08:38,960 ABOUT REQUIRING PIXELS BE 1943 01:08:38,960 --> 01:08:39,920 REMOVED FROM HOSPITAL SYSTEMS, 1944 01:08:39,920 --> 01:08:41,720 THERE ARE A LOT OF RISKS. 1945 01:08:41,720 --> 01:08:43,520 I DON'T SAY THIS PUBLICLY AT A 1946 01:08:43,520 --> 01:08:50,520 LOT OF PLACES BUT I HAVE A 1947 01:08:50,520 --> 01:08:51,360 BLUETOOTH-ENABLED DEVICE, 1948 01:08:51,360 --> 01:08:52,480 THREATS ON IMPLANTED HAVEN'T 1949 01:08:52,480 --> 01:08:54,440 BEEN DISCUSSED YET WITH PATIENTS 1950 01:08:54,440 --> 01:08:54,680 EITHER. 1951 01:08:54,680 --> 01:08:56,720 A LOT OF THINGS WITH DATA BEING 1952 01:08:56,720 --> 01:08:58,160 COLLECTED, THERE ARE A LOT OF 1953 01:08:58,160 --> 01:09:00,440 BAD THINGS OUT THERE. 1954 01:09:00,440 --> 01:09:04,400 I THINK THINGS LIKE DYNAMIC 1955 01:09:04,400 --> 01:09:05,720 CONSENT, LIMITED LICENSING 1956 01:09:05,720 --> 01:09:06,800 PARTNERSHIPS, HAVING PATIENTS ON 1957 01:09:06,800 --> 01:09:09,000 YOUR BOARDS ARE ALL THINGS THAT 1958 01:09:09,000 --> 01:09:12,160 CAN MITIGATE THOSE THINGS AS WE 1959 01:09:12,160 --> 01:09:12,840 MOVE FORWARD. 1960 01:09:12,840 --> 01:09:15,120 BUT I'D LOVE TO HEAR FROM ALL OF 1961 01:09:15,120 --> 01:09:16,440 YOU. 1962 01:09:16,440 --> 01:09:19,560 >>YEAH, I'LL JUMP IN THE HOT 1963 01:09:19,560 --> 01:09:20,080 SEAT NEXT. 1964 01:09:20,080 --> 01:09:25,600 I THINK THERE'S A COUPLE PLACES 1965 01:09:25,600 --> 01:09:28,400 WHERE POLICIES ARE REQUIRED, SO 1966 01:09:28,400 --> 01:09:31,320 I THINK YOU ALREADY MENTIONED A 1967 01:09:31,320 --> 01:09:31,640 COUPLE. 1968 01:09:31,640 --> 01:09:33,200 WITH THE EXPOSURE THAT WE'RE 1969 01:09:33,200 --> 01:09:36,360 GOING TO HAVE GOING FORWARD, AND 1970 01:09:36,360 --> 01:09:37,560 WE'RE WORKING ON SOME OF THE 1971 01:09:37,560 --> 01:09:40,640 ITEMS TO HELP WITH EARLY 1972 01:09:40,640 --> 01:09:41,200 DIAGNOSIS AND DIGITAL 1973 01:09:41,200 --> 01:09:42,520 BIOMARKERS, I DO THINK ABOUT 1974 01:09:42,520 --> 01:09:43,360 THOSE THINGS. 1975 01:09:43,360 --> 01:09:46,520 OKAY, WHO CAN ACCESS THAT 1976 01:09:46,520 --> 01:09:49,800 INFORMATION AND THERE'S NOTHING 1977 01:09:49,800 --> 01:09:50,920 PROTECTING PEOPLE FROM THAT 1978 01:09:50,920 --> 01:09:52,360 INFORMATION, YOU'RE NOT IN A 1979 01:09:52,360 --> 01:09:54,400 PROTECTED CLASS IF WE IDENTIFY 1980 01:09:54,400 --> 01:09:56,040 DIGITAL BIOMARKER ON YOUR PHONE. 1981 01:09:56,040 --> 01:09:57,320 AND ANYBODY CAN BASICALLY BUY 1982 01:09:57,320 --> 01:09:59,000 THAT DATA IN A LOT OF CASES. 1983 01:09:59,000 --> 01:10:01,400 SO I THINK THE WORK YOU'RE DOING 1984 01:10:01,400 --> 01:10:02,720 WITH TECH COMPANIES, I THINK IT 1985 01:10:02,720 --> 01:10:04,600 NEEDS TO GO BEYONDS A BILL OF 1986 01:10:04,600 --> 01:10:06,560 RIGHTS FROM A TECH PERSPECTIVE. 1987 01:10:06,560 --> 01:10:10,840 I THINK IT REQUIRES 1988 01:10:10,840 --> 01:10:11,680 CONGRESSIONAL LEADERSHIP TO SAY 1989 01:10:11,680 --> 01:10:13,240 AS WE HAVE NO FORMS OF DATA 1990 01:10:13,240 --> 01:10:14,640 BECOMING AVAILABLE THIS IS WHAT 1991 01:10:14,640 --> 01:10:16,400 THE DIGITAL RIGHTS ARE RELATED 1992 01:10:16,400 --> 01:10:20,120 TO THAT AND EXPAND ON WHAT WE 1993 01:10:20,120 --> 01:10:22,120 DID UNDER OBAMA CARE AND OTHER 1994 01:10:22,120 --> 01:10:24,280 THINGS, HOW DO WE CLASSIFY, IS 1995 01:10:24,280 --> 01:10:26,160 IT PREEXISTING YOU CAN NO LONGER 1996 01:10:26,160 --> 01:10:27,680 QUALIFY FOR, SOMETHING THAT 1997 01:10:27,680 --> 01:10:34,240 NEEDS TO BE PROTECTED FROM A 1998 01:10:34,240 --> 01:10:35,640 POOLING PERSPECTIVE? 1999 01:10:35,640 --> 01:10:37,760 RIGHT NOW THERE ISN'T ANY REAL 2000 01:10:37,760 --> 01:10:38,880 PROTECTION FOR IT. 2001 01:10:38,880 --> 01:10:41,800 YOUR EXAMPLE ALL THE TIME, FOLKS 2002 01:10:41,800 --> 01:10:44,000 SAY JUST SHARE, WELL, YOU'RE 2003 01:10:44,000 --> 01:10:46,320 USED TO DISEASE AREAS WHERE 2004 01:10:46,320 --> 01:10:48,080 SHARING OUTWEIGHS THE RISK. 2005 01:10:48,080 --> 01:10:50,240 AND THERE ARE FORMS OF MORE 2006 01:10:50,240 --> 01:10:52,520 ADULT ILLNESSES WHERE SOMETIMES 2007 01:10:52,520 --> 01:10:54,760 THE SHARING DOES NOT OUTWEIGH 2008 01:10:54,760 --> 01:10:56,360 RISK OF RAMIFICATIONS, THERE ARE 2009 01:10:56,360 --> 01:11:02,280 NO PROTECTIONS RIGHT NOW FOR IT. 2010 01:11:02,280 --> 01:11:03,160 >>DIANE, ANYTHING? 2011 01:11:03,160 --> 01:11:06,120 >>YEAH, OTHER THAN PENNY HIT ON 2012 01:11:06,120 --> 01:11:09,440 EXACTLY WHAT KEEPS ME UP, THE 2013 01:11:09,440 --> 01:11:11,240 WHOLE THING ABOUT INSURANCE. 2014 01:11:11,240 --> 01:11:12,680 FOR CRITICAL PATH INSTITUTE 2015 01:11:12,680 --> 01:11:13,360 EVERYTHING IS DE-IDENTIFIED 2016 01:11:13,360 --> 01:11:14,640 BEFORE IT COMES IN. 2017 01:11:14,640 --> 01:11:19,080 WE NEED TO DO BETTER EDUCATING 2018 01:11:19,080 --> 01:11:20,800 RISK/REWARD PIECE ESPECIALLY TO 2019 01:11:20,800 --> 01:11:23,880 ALL STAKEHOLDERS INCLUDING 2020 01:11:23,880 --> 01:11:24,560 PHYSICIANS AND GENERAL 2021 01:11:24,560 --> 01:11:27,600 PRACTITIONERS, BECAUSE THE TERM 2022 01:11:27,600 --> 01:11:28,600 OF PRIVACY IS MISUNDERSTOOD. 2023 01:11:28,600 --> 01:11:31,640 IT'S A WHOLE OTHER TOPIC. 2024 01:11:31,640 --> 01:11:32,600 >>THE RISK AROUND SOCIAL MEDIA 2025 01:11:32,600 --> 01:11:33,720 SHARING ARE SOMETHING THAT NEED 2026 01:11:33,720 --> 01:11:34,720 TO BE DISCUSSED WITH OUR 2027 01:11:34,720 --> 01:11:35,920 COMMUNITIES AS WELL BUT WE DON'T 2028 01:11:35,920 --> 01:11:38,400 HAVE TIME. 2029 01:11:38,400 --> 01:11:47,160 2030 01:11:47,160 --> 01:11:48,280 2031 01:11:48,280 --> 01:11:49,680 >>A BRIEF BUT ENTHUSIASTIC 2032 01:11:49,680 --> 01:11:51,560 ROUND OF APPLAUSE FROM ME. 2033 01:11:51,560 --> 01:11:53,280 ONE USER REPORT FROM THE FIELD, 2034 01:11:53,280 --> 01:11:55,920 I WANT TO SINGLE OUT IN 2035 01:11:55,920 --> 01:11:58,120 PARTICULAR THE WONDERFUL PROGRAM 2036 01:11:58,120 --> 01:12:04,480 THAT'S FUNDED BY THE FDA, RUN BY 2037 01:12:04,480 --> 01:12:05,800 CRITICAL PATH INSTITUTE, IN 2038 01:12:05,800 --> 01:12:10,200 COLLABORATION WITH NORD, THE ONE 2039 01:12:10,200 --> 01:12:13,120 THAT ALIZA SPOKE ABOUT, RARE 2040 01:12:13,120 --> 01:12:15,400 DISEASE CURES ACCELERATOR AND 2041 01:12:15,400 --> 01:12:17,400 DATA AND ANALYTICS PLATFORM, 2042 01:12:17,400 --> 01:12:18,960 WE'VE HEARD ABOUT PATIENT DATA, 2043 01:12:18,960 --> 01:12:20,880 IMPORTANCE OF NATURAL HISTORY. 2044 01:12:20,880 --> 01:12:22,680 WE'VE BEEN WORKING FOR 20 YEARS 2045 01:12:22,680 --> 01:12:28,240 ON OUR NATURAL HISTORY DATABASE. 2046 01:12:28,240 --> 01:12:29,560 TERRIBLY IMPORTANT, IMPORTANT 2047 01:12:29,560 --> 01:12:31,320 FOR PLANNING CLINICAL TRIALS, 2048 01:12:31,320 --> 01:12:35,120 FOR RECRUITING OUR CLINICAL 2049 01:12:35,120 --> 01:12:36,440 TRIALS, DEVELOPING ENDPOINTS IN 2050 01:12:36,440 --> 01:12:37,000 BIOMARKERS. 2051 01:12:37,000 --> 01:12:38,960 BUT WHEN THE CRITICAL PATH 2052 01:12:38,960 --> 01:12:42,240 INSTITUTE WAS FUNDED BY THE FDA, 2053 01:12:42,240 --> 01:12:48,480 FOR THIS RARE DISEASE CURES 2054 01:12:48,480 --> 01:12:49,240 ACCELERATOR DATA ANALYTICS 2055 01:12:49,240 --> 01:12:51,360 PLATFORM WE SUBMITTED OUR DATA. 2056 01:12:51,360 --> 01:12:52,640 WE'VE BEEN BUILDING FOR 20 2057 01:12:52,640 --> 01:12:53,080 YEARS. 2058 01:12:53,080 --> 01:12:55,400 BUT EACH TIME WE WENT TO THE FDA 2059 01:12:55,400 --> 01:12:58,880 WE HAD TO TELL THEM, OKAY, WE 2060 01:12:58,880 --> 01:13:00,240 USE NATURAL HISTORY DATA THIS 2061 01:13:00,240 --> 01:13:02,640 WAY TO DESIGN THIS. 2062 01:13:02,640 --> 01:13:05,560 NOW SINCE WE'RE LEADING DISEASE 2063 01:13:05,560 --> 01:13:07,440 GROUP ON THAT PLATFORM, WE'VE 2064 01:13:07,440 --> 01:13:11,760 HAD SEVERAL MEETINGS WITH FDA 2065 01:13:11,760 --> 01:13:12,400 REVIEWERS AND STATISTICIANS AND 2066 01:13:12,400 --> 01:13:13,360 SO FORTH. 2067 01:13:13,360 --> 01:13:15,640 THEY HAVE BECOME SO FAMILIAR 2068 01:13:15,640 --> 01:13:17,200 WITH OUR NATURAL HISTORY 2069 01:13:17,200 --> 01:13:19,360 DATABASE, THEY BUILT THEIR 2070 01:13:19,360 --> 01:13:21,120 CONFIDENCE IN A HIGH QUALITY OF 2071 01:13:21,120 --> 01:13:24,200 THAT DATABASE AND RELIABILITY OF 2072 01:13:24,200 --> 01:13:30,080 THAT DATABASE SO WHEN THIS DRUG 2073 01:13:30,080 --> 01:13:32,280 COMPANY REATA LAST SUMMER 2074 01:13:32,280 --> 01:13:37,960 SUBMITTED DATASETS BASED ON OUR 2075 01:13:37,960 --> 01:13:40,760 NATURAL HISTORY STUDY TO 2076 01:13:40,760 --> 01:13:41,600 SUPPLEMENT DRUG APPLICATION THE 2077 01:13:41,600 --> 01:13:44,560 FDA SAID THEY NO LONGER FELT THE 2078 01:13:44,560 --> 01:13:45,640 NEED FOR ADVISORY COMMITTEE 2079 01:13:45,640 --> 01:13:47,280 MEETING AND WERE GOING TO STICK 2080 01:13:47,280 --> 01:13:49,920 WITH THE PDUFA DATE OF FEBRUARY 2081 01:13:49,920 --> 01:13:53,960 28, RARE DISEASE DAY. 2082 01:13:53,960 --> 01:13:56,240 NOW BECAUSE OF THOSE ADDITIONAL 2083 01:13:56,240 --> 01:13:59,000 DATASETS BASED ON THIS PLATFORM, 2084 01:13:59,000 --> 01:14:01,400 THEY HAVE BECOME FAMILIAR WITH, 2085 01:14:01,400 --> 01:14:03,840 THEY ANNOUNCED OUR FIRST 2086 01:14:03,840 --> 01:14:04,240 APPROVAL. 2087 01:14:04,240 --> 01:14:05,680 SO IT'S TERRIBLY IMPORTANT. 2088 01:14:05,680 --> 01:14:06,880 I'LL CONCLUDE BY SAYING IF YOU 2089 01:14:06,880 --> 01:14:08,840 DON'T HAVE NATURAL HISTORY DATA, 2090 01:14:08,840 --> 01:14:09,160 GET IT. 2091 01:14:09,160 --> 01:14:10,600 IF YOU HAVE NATURAL HISTORY DATA 2092 01:14:10,600 --> 01:14:14,200 AND IT'S NOT YET ON THE RARE 2093 01:14:14,200 --> 01:14:15,840 DISEASE CURES ACCELERATOR 2094 01:14:15,840 --> 01:14:17,280 ANALYTICS PLATFORM PLEASE GET IT 2095 01:14:17,280 --> 01:14:17,600 THERE. 2096 01:14:17,600 --> 01:14:19,480 I WOULD DO YOU TREMENDOUS -- 2097 01:14:19,480 --> 01:14:25,200 SHOW TREMENDOUS BENEFIT. 2098 01:14:25,200 --> 01:14:28,200 >>WE'RE ALL SET. 2099 01:14:28,200 --> 01:14:30,400 >>I AM NAOMI BOOKER, HEALTH 2100 01:14:30,400 --> 01:14:31,640 PROGRAM SPECIALIST AT NINDS. 2101 01:14:31,640 --> 01:14:34,880 OFFICE OF GLOBAL HEALTH AND 2102 01:14:34,880 --> 01:14:36,080 HEALTH DISPARITIES WITHIN THE 2103 01:14:36,080 --> 01:14:40,240 DIVISION OF CLINICAL RESEARCH. 2104 01:14:40,240 --> 01:14:42,120 I'M EXCITED TO PROVIDE A BRIEF 2105 01:14:42,120 --> 01:14:44,680 OVERVIEW OF THE HEALTH EQUALITY 2106 01:14:44,680 --> 01:14:46,520 STRATEGIC PLANNING OFFICE. 2107 01:14:46,520 --> 01:14:50,400 THE NINDS IS DEDICATED TO 2108 01:14:50,400 --> 01:14:51,680 ADDRESSING NEUROLOGICAL HEALTH 2109 01:14:51,680 --> 01:14:53,640 INEQUITIES, FACED BY VULNERABLE 2110 01:14:53,640 --> 01:14:54,520 AND MARGINALIZED POPULATIONS. 2111 01:14:54,520 --> 01:14:57,600 AS WE WORK TO CONTINUE THE 2112 01:14:57,600 --> 01:15:02,840 NEUROLOGICAL HEALTH FOR ALL 2113 01:15:02,840 --> 01:15:03,400 PEOPLE. 2114 01:15:03,400 --> 01:15:04,680 DESPITE THIS, THERE'S STILL 2115 01:15:04,680 --> 01:15:07,080 POPULATIONS THAT EXPERIENCE 2116 01:15:07,080 --> 01:15:07,840 HEALTH DISPARITIES. 2117 01:15:07,840 --> 01:15:10,720 AS A RESULT AS YOU CAN SEE ON 2118 01:15:10,720 --> 01:15:13,560 THE SLIDE WE HIGHLIGHT THE 2119 01:15:13,560 --> 01:15:16,320 CURRENT NIH DEFINED POPULATIONS 2120 01:15:16,320 --> 01:15:18,160 THAT EXPERIENCE HEALTH 2121 01:15:18,160 --> 01:15:18,440 DISPARITIES. 2122 01:15:18,440 --> 01:15:19,760 THE NEUROLOGICAL HEALTH 2123 01:15:19,760 --> 01:15:23,280 CHALLENGES OF PEOPLE WITH LIVED 2124 01:15:23,280 --> 01:15:24,520 EXPERIENCES MAY COMPOUND WHEN 2125 01:15:24,520 --> 01:15:26,040 THEY IDENTIFY AT THE 2126 01:15:26,040 --> 01:15:31,080 INTERSECTION OF MORE THAN ONE 2127 01:15:31,080 --> 01:15:31,760 MARGINALIZED GROUP. 2128 01:15:31,760 --> 01:15:34,480 TO WORK FROM A SHARED 2129 01:15:34,480 --> 01:15:35,360 UNDERSTANDING OF HEALTH 2130 01:15:35,360 --> 01:15:38,280 DISPARITIES, WE USE HEALTHY 2131 01:15:38,280 --> 01:15:40,480 PEOPLE 2030 HEALTH DISPARITIES 2132 01:15:40,480 --> 01:15:40,920 DEFINITION. 2133 01:15:40,920 --> 01:15:42,560 HEALTH DISPARITIES IS NOT SIMPLY 2134 01:15:42,560 --> 01:15:49,240 A DIFFERENCE IN HEALTH OUTCOMES 2135 01:15:49,240 --> 01:15:55,720 BUT A DIFFERENCE TIED TO 2136 01:15:55,720 --> 01:15:56,360 POPULATIONS EXPERIENCING GREATER 2137 01:15:56,360 --> 01:15:58,560 OBSTACLES BASED ON CHARACTERS 2138 01:15:58,560 --> 01:16:02,200 LINKED TO DISCRIMINATION OR 2139 01:16:02,200 --> 01:16:02,880 EXCLUSION. 2140 01:16:02,880 --> 01:16:05,240 THE GOAL OF THE NINDS STRATEGIC 2141 01:16:05,240 --> 01:16:08,640 PLANNING EFFORT IS TO ADVANCE 2142 01:16:08,640 --> 01:16:09,960 HEALTH EQUITIES THROUGH 2143 01:16:09,960 --> 01:16:11,400 NEUROLOGICAL RESEARCH. 2144 01:16:11,400 --> 01:16:14,560 AND TRAINING AND NOTE EMPHASIS 2145 01:16:14,560 --> 01:16:16,320 ON EQUALITY AND EQUITY. 2146 01:16:16,320 --> 01:16:19,280 IN HEALTH EQUITY INDIVIDUALS ARE 2147 01:16:19,280 --> 01:16:22,320 EMPOWERED TO ATTAIN HIGHEST 2148 01:16:22,320 --> 01:16:26,720 OPTIMAL HEALTH, THERE'S NO 2149 01:16:26,720 --> 01:16:27,800 ONE-SIZE-FITS-ALL APPROACH TO 2150 01:16:27,800 --> 01:16:29,640 HEALTH OPPORTUNITY AND UNIQUE 2151 01:16:29,640 --> 01:16:34,040 DIFFERENCES ACROSS POPULATIONS 2152 01:16:34,040 --> 01:16:36,120 MUST BE CONSIDERED. 2153 01:16:36,120 --> 01:16:39,800 IN 2020, THE NINDS EMBARKED ON A 2154 01:16:39,800 --> 01:16:41,080 TWO-YEAR STRATEGIC PLANNING 2155 01:16:41,080 --> 01:16:45,400 EFFORT TO IDENTIFY GAPS IN A 2156 01:16:45,400 --> 01:16:47,480 HEALTH DISPARITIES RESEARCH 2157 01:16:47,480 --> 01:16:48,000 PORTFOLIO. 2158 01:16:48,000 --> 01:16:52,920 TO ALSO DEVELOP HEALTH EQUITY 2159 01:16:52,920 --> 01:16:54,720 RESEARCH PRIORITIES FOR FIVE TO 2160 01:16:54,720 --> 01:16:58,600 TEN YEARS. 2161 01:16:58,600 --> 01:16:59,720 THE NATIONAL ADVISORY COUNCIL 2162 01:16:59,720 --> 01:17:02,160 WORKING GROUP ON HEALTH EQUITY 2163 01:17:02,160 --> 01:17:04,640 WAS CONVENED AND COMPRISED OF 2164 01:17:04,640 --> 01:17:06,800 OVER 30 RENOWNED HEALTH EXPERTS, 2165 01:17:06,800 --> 01:17:09,000 BOTH IN THE FIELD OF 2166 01:17:09,000 --> 01:17:11,120 NEUROLOGICAL DISEASE AND HEALTH 2167 01:17:11,120 --> 01:17:11,840 DISPARITIES. 2168 01:17:11,840 --> 01:17:19,960 AND THERE -- THEY WERE TASKED 2169 01:17:19,960 --> 01:17:22,600 WITH REGULATIONS. 2170 01:17:22,600 --> 01:17:24,320 THEY REVIEWED THE REPORT, ALSO 2171 01:17:24,320 --> 01:17:28,960 USED THE INPUT FROM TRANS-NIH 2172 01:17:28,960 --> 01:17:32,760 WORKING GROUP, PORTFOLIO 2173 01:17:32,760 --> 01:17:35,440 ANALYSIS AND REQUEST FOR 2174 01:17:35,440 --> 01:17:35,760 INFORMATION. 2175 01:17:35,760 --> 01:17:38,400 THEY ALSO CONDUCTED IN DEPTH 2176 01:17:38,400 --> 01:17:39,160 LITERATURE REVIEWS. 2177 01:17:39,160 --> 01:17:43,280 THE CAPSTONE OF THE PROCESS WAS 2178 01:17:43,280 --> 01:17:45,240 HEADWAY WORKSHOP, ALL COUNCIL 2179 01:17:45,240 --> 01:17:48,120 WORKING FOR FOR HEALTH EQUITY 2180 01:17:48,120 --> 01:17:48,760 PRESENTED SUMMARY TO LEADERSHIP 2181 01:17:48,760 --> 01:17:55,080 AND ALSO TO THE PUBLIC. 2182 01:17:55,080 --> 01:17:56,640 CLINICIANS RESEARCHERS, ADVOCACY 2183 01:17:56,640 --> 01:17:57,600 ORGANIZATIONS, COMMUNITY 2184 01:17:57,600 --> 01:17:59,720 MEMBERS, PATIENTS AND STAFF WERE 2185 01:17:59,720 --> 01:18:02,200 ALL ABLE TO COMMENT AND TO 2186 01:18:02,200 --> 01:18:06,240 PROVIDE ADDITIONAL FEEDBACK 2187 01:18:06,240 --> 01:18:09,120 DURING THIS WORKSHOP. 2188 01:18:09,120 --> 01:18:11,200 THE STRATEGIC PLANNING OUTPUTS 2189 01:18:11,200 --> 01:18:13,720 ARE DESCRIBED IN DETAIL WITHIN 2190 01:18:13,720 --> 01:18:14,920 10 MANUSCRIPT ACCEPTED BY THE 2191 01:18:14,920 --> 01:18:16,360 JOURNAL OF NEUROLOGY AND 2192 01:18:16,360 --> 01:18:17,880 EXPECTED TO BE PUBLISHED WITHIN 2193 01:18:17,880 --> 01:18:25,080 THE NEXT FEW WEEKS. 2194 01:18:25,080 --> 01:18:32,000 WE'RE REALLY EXCITED ABOUT THAT. 2195 01:18:32,000 --> 01:18:35,600 THE SUMMARIES WERE SUBMITTED, 2196 01:18:35,600 --> 01:18:37,360 CAPTURED WITHIN 18 OVERARCHING 2197 01:18:37,360 --> 01:18:38,680 RECOMMENDATIONS, SOME OF THESE 2198 01:18:38,680 --> 01:18:42,000 THEMES ARE DEPICTED IN THE WORD 2199 01:18:42,000 --> 01:18:42,200 CLOUD. 2200 01:18:42,200 --> 01:18:44,200 LARGELY THE THEMES COVERED A 2201 01:18:44,200 --> 01:18:46,520 VERY BROAD RANGE OF TOPICS 2202 01:18:46,520 --> 01:18:49,480 INCLUDING COMMUNITY ENGAGEMENT, 2203 01:18:49,480 --> 01:18:51,360 TRAINING AND EDUCATION, 2204 01:18:51,360 --> 01:18:52,640 COMMUNICATION, HEALTH EQUITY 2205 01:18:52,640 --> 01:18:53,200 RESEARCH. 2206 01:18:53,200 --> 01:18:55,480 AT THIS STAGE, THE NINDS IS NOW 2207 01:18:55,480 --> 01:18:59,360 FOCUSING ON THE STRATEGIC 2208 01:18:59,360 --> 01:19:00,320 IMPLEMENTATION OF THESE 2209 01:19:00,320 --> 01:19:00,680 RECOMMENDATIONS. 2210 01:19:00,680 --> 01:19:02,480 IN DIRECT RESPONSE TO THESE 2211 01:19:02,480 --> 01:19:05,560 RECOMMENDATIONS ONE OF THOSE 2212 01:19:05,560 --> 01:19:08,000 MAJOR EFFORTS IS NEW NINDS 2213 01:19:08,000 --> 01:19:11,280 COMMUNITY ENGAGED HEALTH EQUITY 2214 01:19:11,280 --> 01:19:11,960 RESEARCH IN NEUROSCIENCE 2215 01:19:11,960 --> 01:19:15,000 INITIATIVE WHICH IS A 2216 01:19:15,000 --> 01:19:16,320 MULTI-PRONGED APPROACH TO 2217 01:19:16,320 --> 01:19:17,960 ADVANCING COMMUNITY ENGAGED 2218 01:19:17,960 --> 01:19:21,200 HEALTH EQUITY RESEARCH ACROSS 2219 01:19:21,200 --> 01:19:22,760 ALL NEUROLOGICAL DISEASE AREAS 2220 01:19:22,760 --> 01:19:24,640 WITHIN POPULATIONS THAT 2221 01:19:24,640 --> 01:19:27,040 EXPERIENCE HEALTH DISPARITIES 2222 01:19:27,040 --> 01:19:29,040 AND TO SUPPORT COLLABORATION, 2223 01:19:29,040 --> 01:19:32,000 EDUCATION, AND CAPACITY BUILDING 2224 01:19:32,000 --> 01:19:35,880 TO CONDUCT SUCH RESEARCH. 2225 01:19:35,880 --> 01:19:38,640 THE INTERVENTION SDOH 2226 01:19:38,640 --> 01:19:39,840 COMMUNICATION AND FRAMEWORK 2227 01:19:39,840 --> 01:19:41,920 SUBCOMMITTEES ALL EMPHASIZE THE 2228 01:19:41,920 --> 01:19:44,640 IMPORTANCE OF ADVANCING 2229 01:19:44,640 --> 01:19:47,040 COMMUNITY ENGAGED RESEARCH IN 2230 01:19:47,040 --> 01:19:50,000 NEUROSCIENCE AND MEDICINE TO 2231 01:19:50,000 --> 01:19:50,560 FOSTER SUSTAINABLE HEALTH 2232 01:19:50,560 --> 01:19:53,320 DISPARITIES INTERVENTION AND TO 2233 01:19:53,320 --> 01:19:56,600 ALSO ACHIEVE HEALTH EQUITIES. 2234 01:19:56,600 --> 01:19:59,440 THESE RECOMMENDATIONS BROADLY 2235 01:19:59,440 --> 01:20:01,640 INCLUDE PRIORITIZING, 2236 01:20:01,640 --> 01:20:03,280 INCENTIVIZING RESEARCH INCLUSION 2237 01:20:03,280 --> 01:20:05,080 OF PARTICIPANTS AND RESEARCH 2238 01:20:05,080 --> 01:20:07,720 TEAMS WITH LIVED EXPERIENCE WITH 2239 01:20:07,720 --> 01:20:08,840 HEALTH DISPARITIES, IN 2240 01:20:08,840 --> 01:20:11,920 NEUROLOGICAL DISEASES. 2241 01:20:11,920 --> 01:20:13,760 AND MORE IMPORTANTLY, INVOLVING 2242 01:20:13,760 --> 01:20:14,520 COMMUNITIES AND THOSE 2243 01:20:14,520 --> 01:20:16,840 POPULATIONS THAT EXPERIENCE 2244 01:20:16,840 --> 01:20:19,920 HEALTH DISPARITIES IN THE 2245 01:20:19,920 --> 01:20:21,600 RESEARCH EARLY AND CONTINUOUSLY. 2246 01:20:21,600 --> 01:20:27,560 AS WELL AS DEVELOPING CURRICULA 2247 01:20:27,560 --> 01:20:29,080 THAT ADDRESS CHALLENGES IN 2248 01:20:29,080 --> 01:20:31,240 COMMUNITY ENGAGED RESEARCH. 2249 01:20:31,240 --> 01:20:32,680 FINALLY I'M ENTHUSED TO SHARE 2250 01:20:32,680 --> 01:20:35,080 ANOTHER MAJOR OUTPUT FROM THIS 2251 01:20:35,080 --> 01:20:37,440 PROCESS, WHICH WAS DEVELOPMENT 2252 01:20:37,440 --> 01:20:39,400 OF THE NINDS SOCIAL DETERMINANTS 2253 01:20:39,400 --> 01:20:42,120 OF HEALTH FRAMEWORK FOR 2254 01:20:42,120 --> 01:20:44,960 ADDRESSING HEALTH INEQUITIES. 2255 01:20:44,960 --> 01:20:46,400 WHICH HIGHLIGHT MODIFIABLE 2256 01:20:46,400 --> 01:20:50,360 SOCIAL DETERMINANTS OF HEALTH 2257 01:20:50,360 --> 01:20:54,800 RESEARCH, TARGET PATHWAYS THAT 2258 01:20:54,800 --> 01:20:56,720 SDOH AND HEALTH DISPARITIES 2259 01:20:56,720 --> 01:20:58,160 PROVIDE HEALTH INEQUITIES, 2260 01:20:58,160 --> 01:20:59,640 BROADLY ADAPTED IN NEUROSCIENCE 2261 01:20:59,640 --> 01:21:02,400 AND ALSO SERVE AS GUIDE TO 2262 01:21:02,400 --> 01:21:05,800 IMPROVE QUALITY OF NEUROLOGICAL 2263 01:21:05,800 --> 01:21:06,320 RESEARCH. 2264 01:21:06,320 --> 01:21:08,640 I THANK YOU FOR ALLOWING ME TO 2265 01:21:08,640 --> 01:21:10,400 PRESENT TODAY. 2266 01:21:10,400 --> 01:21:11,800 PLEASE USE THE FOLLOWING QR 2267 01:21:11,800 --> 01:21:13,320 CODES TO SUBSCRIBE TO OUR 2268 01:21:13,320 --> 01:21:15,520 LISTSERV AND VISIT OUR WEBSITE 2269 01:21:15,520 --> 01:21:17,320 FOR FUNDING OPPORTUNITIES, OUR 2270 01:21:17,320 --> 01:21:18,320 INITIATIVES, ANY ANNOUNCEMENTS. 2271 01:21:18,320 --> 01:21:22,280 NOW I WILL PASS THINGS OVER TO 2272 01:21:22,280 --> 01:21:23,360 MY COLLEAGUE DR. CHERYSE SANKAR. 2273 01:21:23,360 --> 01:21:27,800 THANK YOU. 2274 01:21:27,800 --> 01:21:34,000 2275 01:21:34,000 --> 01:21:34,160 2276 01:21:34,160 --> 01:21:36,560 >>THANK YOU FOR THE EXCELLENT 2277 01:21:36,560 --> 01:21:37,160 OVERVIEW. 2278 01:21:37,160 --> 01:21:40,240 I WILL BE SERVING AS MODERATOR, 2279 01:21:40,240 --> 01:21:41,800 I'M A PROGRAM DIRECTOR IN OFFICE 2280 01:21:41,800 --> 01:21:43,680 OF GLOBAL HEALTH AND HEALTH 2281 01:21:43,680 --> 01:21:46,880 DISPARITIES, WE'RE EXCITED TO 2282 01:21:46,880 --> 01:21:48,160 BRING TOGETHER SOME PARTNERS 2283 01:21:48,160 --> 01:21:50,160 FROM INDUSTRY AND NON-PROFIT TO 2284 01:21:50,160 --> 01:21:51,360 COLLECTIVELY DISCUSS THESE 2285 01:21:51,360 --> 01:21:53,880 CENTRAL ISSUES AROUND STRATEGIES 2286 01:21:53,880 --> 01:21:55,480 TO BOOST ENROLLMENT IN CLINICAL 2287 01:21:55,480 --> 01:21:56,280 TRIALS, PARTICULARLY THROUGH 2288 01:21:56,280 --> 01:21:57,960 THIS LENS OF COMMUNITY 2289 01:21:57,960 --> 01:21:59,560 ENGAGEMENT. 2290 01:21:59,560 --> 01:22:03,960 WE KNOW AND WE'VE HEARD THAT 2291 01:22:03,960 --> 01:22:05,160 THESE ARE OVERARCHING 2292 01:22:05,160 --> 01:22:06,240 CHALLENGES, WE DON'T INTEND OR 2293 01:22:06,240 --> 01:22:09,680 THINK WE CAN GET THROUGH ALL OF 2294 01:22:09,680 --> 01:22:10,720 THESE ARE IN THE 45-MINUTE 2295 01:22:10,720 --> 01:22:12,040 SESSION WE HAVE. 2296 01:22:12,040 --> 01:22:15,880 WE WANT TO IMTAMPA SIZE -- 2297 01:22:15,880 --> 01:22:20,600 EMPHASIZE THIS IS ONE PART OF 2298 01:22:20,600 --> 01:22:21,040 THE DISCUSSION. 2299 01:22:21,040 --> 01:22:23,200 WE WANT TO HEAR FROM YOU AND MAY 2300 01:22:23,200 --> 01:22:26,080 NOT GET TO EVERYONE'S QUESTIONS 2301 01:22:26,080 --> 01:22:27,600 AND MAY NOT HAVE AS MUCH TIME 2302 01:22:27,600 --> 01:22:29,440 TOWARD THE END BUT IF YOU WANT 2303 01:22:29,440 --> 01:22:30,880 TO PROVIDE YOUR INPUT AND ANSWER 2304 01:22:30,880 --> 01:22:32,280 QUESTIONS WE'RE GOING TO BE 2305 01:22:32,280 --> 01:22:34,920 COLLECTING THOSE AT THE END, OUR 2306 01:22:34,920 --> 01:22:36,800 DIRECTOR DR. BENSON WILL COLLECT 2307 01:22:36,800 --> 01:22:38,320 THOSE AND LOOKING OVER THEM AND 2308 01:22:38,320 --> 01:22:40,280 CLOSING OUT OUR SESSION. 2309 01:22:40,280 --> 01:22:42,240 I WOULD LIKE TO INVITE OUR 2310 01:22:42,240 --> 01:22:44,560 SPEAKERS TO COME UP. 2311 01:22:44,560 --> 01:22:51,200 I'LL INTRODUCE THEM. 2312 01:22:51,200 --> 01:22:52,640 STEPHANIE MONROE, UsAgainst 2313 01:22:52,640 --> 01:22:54,280 ALZHEIMER'S, NATIONAL ADVOCACY 2314 01:22:54,280 --> 01:22:54,880 ORGANIZATION THAT'S BASED IN 2315 01:22:54,880 --> 01:22:56,800 WASHINGTON, D.C. 2316 01:22:56,800 --> 01:22:59,000 SHE DIRECTS AFRICAN AMERICANS 2317 01:22:59,000 --> 01:23:00,240 AGAINST ALZHEIMER'S FOUNDED IN 2318 01:23:00,240 --> 01:23:03,040 2013, THAT'S THE FIRST NATIONAL 2319 01:23:03,040 --> 01:23:06,200 NETWORK CREATED TO RESPOND TO 2320 01:23:06,200 --> 01:23:07,880 ALZHEIMER'S DISEASE DISPARATE 2321 01:23:07,880 --> 01:23:08,920 IMPACT ON AFRICAN AMERICANS, 2322 01:23:08,920 --> 01:23:13,600 RECENTLY PUBMED FANNED A PUBME- 2323 01:23:13,600 --> 01:23:16,080 PUBLISHED THE LACK OF 2324 01:23:16,080 --> 01:23:17,720 GENERALIZABILITY OF ALZHEIMER'S 2325 01:23:17,720 --> 01:23:18,480 RESEARCH MINORITIZED 2326 01:23:18,480 --> 01:23:20,120 POPULATIONS, CHECK THAT OUT. 2327 01:23:20,120 --> 01:23:26,800 WE INVITE YOU TO SIT AT THE 2328 01:23:26,800 --> 01:23:27,240 TABLE. 2329 01:23:27,240 --> 01:23:31,080 DR. PIERRE THEODORE, GLOBAL 2330 01:23:31,080 --> 01:23:31,920 PHARMACEUTICAL FIRM, ROCHE 2331 01:23:31,920 --> 01:23:32,560 GENENTECH, DISTINGUISHED CAREER 2332 01:23:32,560 --> 01:23:34,680 IN HEALTH CARE SERVICE DELIVERY, 2333 01:23:34,680 --> 01:23:36,400 INNOVATION, GLOBAL HEALTH IN 2334 01:23:36,400 --> 01:23:38,840 ACADEMIC AND PRIVATE SECTOR 2335 01:23:38,840 --> 01:23:39,280 ROLES. 2336 01:23:39,280 --> 01:23:40,360 WELCOME, DR. THEODORE. 2337 01:23:40,360 --> 01:23:42,120 THANK YOU. 2338 01:23:42,120 --> 01:23:42,760 MR. TONY PEARSON, SENIOR 2339 01:23:42,760 --> 01:23:44,000 DIRECTOR OF DIVERSITY AND 2340 01:23:44,000 --> 01:23:46,880 INCLUSION IN CLINICAL TRIALS AT 2341 01:23:46,880 --> 01:23:50,200 ELI LILLY, LEADS CLINICAL TRIAL 2342 01:23:50,200 --> 01:23:51,840 DIVERSITY OPERATIONS ACROSS ALL 2343 01:23:51,840 --> 01:23:53,360 AREAS AND MANAGES TEAMS 2344 01:23:53,360 --> 01:23:56,880 RESPONSIBLE FOR SITE START-UP 2345 01:23:56,880 --> 01:23:58,520 AND ENROLLMENT READINESS, 2346 01:23:58,520 --> 01:24:07,360 SUPPORTED THE DIABETES CORPORATE 2347 01:24:07,360 --> 01:24:08,480 AFFAIRS TEAM. 2348 01:24:08,480 --> 01:24:09,680 WELCOME TO THE PANELISTS. 2349 01:24:09,680 --> 01:24:11,520 I'LL HAVE A SEAT AS WELL BECAUSE 2350 01:24:11,520 --> 01:24:14,800 I DID NOT BRING SHOES TO STAND 2351 01:24:14,800 --> 01:24:15,680 HERE. 2352 01:24:15,680 --> 01:24:17,880 WE'LL START WITH THAT 2353 01:24:17,880 --> 01:24:18,480 INTRODUCTORY QUESTION. 2354 01:24:18,480 --> 01:24:22,800 I'LL TRANSITION HERE. 2355 01:24:22,800 --> 01:24:24,480 YOU HAVE TO PUSH THE BUTTON TO 2356 01:24:24,480 --> 01:24:26,080 START AND I DON'T THINK WE'LL 2357 01:24:26,080 --> 01:24:27,080 HAVE ANY ISSUES, THANKS TO THE 2358 01:24:27,080 --> 01:24:28,160 I.T. TEAM AS WELL. 2359 01:24:28,160 --> 01:24:31,680 WE'RE GOING TO KICK OFF WITH 2360 01:24:31,680 --> 01:24:32,520 SOME INTRODUCTORY QUESTIONS. 2361 01:24:32,520 --> 01:24:34,960 WE'D LIKE TO KNOW WITHIN YOUR 2362 01:24:34,960 --> 01:24:36,720 COMPANY AND ORGANIZATION, WHY IS 2363 01:24:36,720 --> 01:24:40,000 ADVANCING HEALTH EQUITY SO 2364 01:24:40,000 --> 01:24:41,640 IMPORTANT AND HOW DOES IT RELATE 2365 01:24:41,640 --> 01:24:43,600 TO DIVERSITY AND INCLUSION IN 2366 01:24:43,600 --> 01:24:44,000 CLINICAL STUDIES. 2367 01:24:44,000 --> 01:24:49,320 WE'LL START WITH MR. PEARSON. 2368 01:24:49,320 --> 01:24:52,280 >>FOR US AT ELI LILLY, I'LL 2369 01:24:52,280 --> 01:24:55,680 START WITH A COUPLE MOMENTS THAT 2370 01:24:55,680 --> 01:24:58,000 INSPIRE CHANGE. 2371 01:24:58,000 --> 01:25:04,000 SO, TWO THAT I RAISE WOULD BE 2372 01:25:04,000 --> 01:25:05,240 FDA'S DRAFT GUIDANCE IN 2020, 2373 01:25:05,240 --> 01:25:06,960 THEIR WORK STARTED WELL BEFORE 2374 01:25:06,960 --> 01:25:09,160 THEN BUT AS A FORMER 2375 01:25:09,160 --> 01:25:09,840 TRANSACTIONAL HEALTH LAWYER 2376 01:25:09,840 --> 01:25:11,720 THERE'S A CERTAIN LEVEL OF 2377 01:25:11,720 --> 01:25:12,920 MOTIVATION IN THE REGULATORY 2378 01:25:12,920 --> 01:25:14,320 ENVIRONMENT, SO APPLAUSE AND 2379 01:25:14,320 --> 01:25:19,000 APPRECIATION FOR THEIR 2380 01:25:19,000 --> 01:25:21,560 LEADERSHIP IN THAT SPACE. 2381 01:25:21,560 --> 01:25:23,400 WE EVOLVED FROM HEALTH EQUITY 2382 01:25:23,400 --> 01:25:24,800 PERSPECTIVE POST THAT TO HAVE 2383 01:25:24,800 --> 01:25:28,120 OUR FIRST TWO POSITIONS 2384 01:25:28,120 --> 01:25:28,960 DEDICATED TO DIVERSITY, EQUITY, 2385 01:25:28,960 --> 01:25:30,600 AND INCLUSION, I'M THE BETA 2386 01:25:30,600 --> 01:25:33,120 VERSION, THE NEXT EDITION OF 2387 01:25:33,120 --> 01:25:34,440 THAT EFFORT. 2388 01:25:34,440 --> 01:25:37,480 WE REALIZED THE SIZE OF OUR 2389 01:25:37,480 --> 01:25:39,680 ORGANIZATION WE NEEDED MORE OF A 2390 01:25:39,680 --> 01:25:40,280 FUNCTION THAN INDIVIDUAL 2391 01:25:40,280 --> 01:25:42,640 CONTRIBUTORS, SO WHAT I HAVE ARE 2392 01:25:42,640 --> 01:25:44,840 TEAM MEMBERS EMBEDDED WITHIN 2393 01:25:44,840 --> 01:25:51,800 EACH OF OUR THERAPEUTIC AREAS 2394 01:25:51,800 --> 01:25:54,440 DESIGNED TO DRIVE CLINICAL 2395 01:25:54,440 --> 01:25:54,680 TRIALS. 2396 01:25:54,680 --> 01:25:56,840 THE OTHER PIECE, WITH RESPECT TO 2397 01:25:56,840 --> 01:25:57,760 DEATH OF MR. FLOYD. 2398 01:25:57,760 --> 01:26:01,360 THE MURDER OF MR. FLOYD, ELI 2399 01:26:01,360 --> 01:26:02,560 LILLY & COMPANY SPARKED 2400 01:26:02,560 --> 01:26:05,280 EVOLUTION OF A RACIAL JUSTICE 2401 01:26:05,280 --> 01:26:07,040 CORPORATE INITIATIVE, FIVE 2402 01:26:07,040 --> 01:26:11,200 PILLARS, CENTRAL IS FOCUSED ON 2403 01:26:11,200 --> 01:26:13,720 HEALTH EQUITY. 2404 01:26:13,720 --> 01:26:16,760 MY TEAM AND SEVERAL MEMBERS, 2405 01:26:16,760 --> 01:26:17,720 EVEN WITH PRICING REIMBURSEMENTS 2406 01:26:17,720 --> 01:26:20,280 OR IS HEALTH EQUITY AND WITHIN 2407 01:26:20,280 --> 01:26:27,160 OUR CORPORATE AFFAIRS 2408 01:26:27,160 --> 01:26:35,400 DEPARTMENT, SPECIFICALLY SOCIAL 2409 01:26:35,400 --> 01:26:35,920 IMPACT. 2410 01:26:35,920 --> 01:26:36,600 ENROLLMENT IN DIVERSE 2411 01:26:36,600 --> 01:26:37,440 PERSPECTIVES IN THE TRIAL, 2412 01:26:37,440 --> 01:26:40,440 TRYING TO MAKE SURE WE HAVE 2413 01:26:40,440 --> 01:26:42,040 DIVERSITY AND INCLUSION IN 2414 01:26:42,040 --> 01:26:43,680 TRIALS TO GET MEDICATIONS TO 2415 01:26:43,680 --> 01:26:45,320 FOLKS WHEN THEY ACCESS THEM THEY 2416 01:26:45,320 --> 01:26:48,080 TRULY ARE SAFE AND EFFICACIOUS 2417 01:26:48,080 --> 01:26:49,280 FOR RESPECTIVE COMMUNITIES. 2418 01:26:49,280 --> 01:26:51,120 WE CAN'T SAY WE CARE ABOUT 2419 01:26:51,120 --> 01:26:53,520 EQUITY AND THE PART WE PLAY AND 2420 01:26:53,520 --> 01:26:56,600 STILL HAVE SUCH A WAYS TO GO TO 2421 01:26:56,600 --> 01:26:58,280 MAKE SURE WE'RE DELIVERING BY 2422 01:26:58,280 --> 01:26:59,560 MAKING SURE TRIALS ARE INCLUSIVE 2423 01:26:59,560 --> 01:27:04,080 AS THEY POSSIBLY CAN BE. 2424 01:27:04,080 --> 01:27:07,000 THE AREAS OF FOCUS ARE ACROSS 2425 01:27:07,000 --> 01:27:08,120 DIMENSIONS THAT WERE 2426 01:27:08,120 --> 01:27:09,760 ARTICULATED. 2427 01:27:09,760 --> 01:27:14,360 RACE AND ETHNICITY BUT ALSO 2428 01:27:14,360 --> 01:27:15,720 GENDER IDENTIFICATION, 2429 01:27:15,720 --> 01:27:16,320 ORIENTATION, PEOPLE WITH 2430 01:27:16,320 --> 01:27:18,080 DISABILITY MAKING SURE WE HAVE 2431 01:27:18,080 --> 01:27:19,280 ACCESS AND TACTICS TO SUPPORT 2432 01:27:19,280 --> 01:27:24,320 EACH ONE OF OUR THERAPEUTIC 2433 01:27:24,320 --> 01:27:25,640 AREAS TO MAKE SURE EACH 2434 01:27:25,640 --> 01:27:27,960 POPULATION AREAS THAT ACCESS TO 2435 01:27:27,960 --> 01:27:28,560 TRIALS AND ARE RETAINED. 2436 01:27:28,560 --> 01:27:31,360 >>THANK YOU VERY MUCH. 2437 01:27:31,360 --> 01:27:32,000 DR. THEODORE? 2438 01:27:32,000 --> 01:27:32,360 >>THANKS. 2439 01:27:32,360 --> 01:27:33,360 I'M DELIGHTED TO BE HERE. 2440 01:27:33,360 --> 01:27:37,400 I WANT TO COMMENT ON BEHALF OF 2441 01:27:37,400 --> 01:27:41,200 THE 110,000 EMPLOYEES AT ROCHE 2442 01:27:41,200 --> 01:27:43,440 AND GENENTECH WE'RE DELIGHTED TO 2443 01:27:43,440 --> 01:27:45,920 BE HERE AND LEARN ABOUT THE 2444 01:27:45,920 --> 01:27:46,240 PARTNERSHIP. 2445 01:27:46,240 --> 01:27:47,360 FROM OUR PERSPECTIVE HEALTH 2446 01:27:47,360 --> 01:27:50,880 EQUITY WHAT WE LABEL AS A CORE 2447 01:27:50,880 --> 01:27:51,600 OPERATING PRINCIPLE. 2448 01:27:51,600 --> 01:27:53,280 WE SAY THAT FOR A COUPLE 2449 01:27:53,280 --> 01:27:54,240 REASONS. 2450 01:27:54,240 --> 01:27:55,920 ONE WHICH IS SPECIFICALLY A 2451 01:27:55,920 --> 01:27:57,120 BUSINESS PRIORITY, WHICH IS TO 2452 01:27:57,120 --> 01:27:58,320 SAY THAT CLINICAL TRIALS IS 2453 01:27:58,320 --> 01:28:00,720 ESSENTIALLY THE LIFE BLOOD OF 2454 01:28:00,720 --> 01:28:02,040 OUR ORGANIZATION. 2455 01:28:02,040 --> 01:28:03,560 IT'S IMPORTANT WE BOTH INCLUDE A 2456 01:28:03,560 --> 01:28:05,440 WIDE RANGE OF PARTICIPANTS IN 2457 01:28:05,440 --> 01:28:08,040 THOSE CLINICAL TRIALS, BUT 2458 01:28:08,040 --> 01:28:08,840 MOREOVER THAT WE ENSURE 2459 01:28:08,840 --> 01:28:10,600 OURSELVES THE DRUGS WE BRING TO 2460 01:28:10,600 --> 01:28:19,360 MARKET ARE SAFE AND EFFECTIVE IN 2461 01:28:19,360 --> 01:28:20,240 ALL POPULATIONS, CLINICAL TRIAL 2462 01:28:20,240 --> 01:28:21,520 DIVERSITY IS AN ESSENTIAL PART 2463 01:28:21,520 --> 01:28:23,280 OF OUR DRUG DEVELOPMENT 2464 01:28:23,280 --> 01:28:23,800 STRATEGY. 2465 01:28:23,800 --> 01:28:28,760 THE SECONDHAND, IT'S QUITE 2466 01:28:28,760 --> 01:28:30,080 SIMPLY A MORAL INTERACTIVE, 2467 01:28:30,080 --> 01:28:33,240 PLAYING A CRITICAL ROLE IN THE 2468 01:28:33,240 --> 01:28:34,200 HEALTH CARE SYSTEMS GLOBALLY, 2469 01:28:34,200 --> 01:28:36,640 NOT TO TAKE QUITE SERIOUSLY THE 2470 01:28:36,640 --> 01:28:38,760 IDEA OF BEING INCLUSIVE AND 2471 01:28:38,760 --> 01:28:40,800 REPRESENTATIVE IN OUR CLINICAL 2472 01:28:40,800 --> 01:28:43,320 TRIALS AND DRUG DEVELOPMENT AND 2473 01:28:43,320 --> 01:28:44,600 MARKETING AND COMMERCIALIZATION 2474 01:28:44,600 --> 01:28:45,840 STRATEGIES WOULD BE A MORAL 2475 01:28:45,840 --> 01:28:47,240 FAILURE ON OUR PART. 2476 01:28:47,240 --> 01:28:49,200 THERE ARE WE'VE CONTINUED TO 2477 01:28:49,200 --> 01:28:52,160 BUILD OUT EFFECTIVELY PATIENT 2478 01:28:52,160 --> 01:28:54,840 INCLUSION AND HEALTH IMPACT 2479 01:28:54,840 --> 01:28:57,000 FUNCTIONALITIES TO LIVE INTO THE 2480 01:28:57,000 --> 01:29:00,080 MORAL MISSION FOR GENENTECH AND 2481 01:29:00,080 --> 01:29:10,040 ROCHE, BEING OUR PARENT COMPANY. 2482 01:29:10,040 --> 01:29:10,600 >>AND MS. MONROE? 2483 01:29:10,600 --> 01:29:12,680 >>I THINK IT'S A GREAT QUESTION 2484 01:29:12,680 --> 01:29:16,520 BECAUSE AS A PATIENT ADVOCACY 2485 01:29:16,520 --> 01:29:17,560 ORGANIZATION WHEN WE FOUNDED 13 2486 01:29:17,560 --> 01:29:20,000 YEARS AGO ONE OF THE FIRST THING 2487 01:29:20,000 --> 01:29:22,200 DID I IS LOOKED AT DATA. 2488 01:29:22,200 --> 01:29:24,600 I'M A DATA WONKY PERSON. 2489 01:29:24,600 --> 01:29:26,640 I WANTED TO UNDERSTAND WHAT WAS 2490 01:29:26,640 --> 01:29:28,560 GOING ON IN THE AFRICAN AMERICAN 2491 01:29:28,560 --> 01:29:29,960 LATINO POPULATION WITH 2492 01:29:29,960 --> 01:29:30,320 ALZHEIMER'S. 2493 01:29:30,320 --> 01:29:32,040 AND IT WAS VERY QUICKLY 2494 01:29:32,040 --> 01:29:34,480 UNDERSTOOD BY ME AND BY OTHERS 2495 01:29:34,480 --> 01:29:37,120 THAT WE WERE IN FACT LIKE SO 2496 01:29:37,120 --> 01:29:39,360 MANY OTHER DISEASES TWICE AS 2497 01:29:39,360 --> 01:29:42,000 LIKELY TO DEVELOP ALZHEIMER'S AS 2498 01:29:42,000 --> 01:29:42,320 OTHERS. 2499 01:29:42,320 --> 01:29:45,400 ALSO QUICKLY LEARNED THAT WE 2500 01:29:45,400 --> 01:29:47,160 WERE WAY UNDERDIAGNOSED, ABOUT 2501 01:29:47,160 --> 01:29:49,760 40% OF PEOPLE LIVING, WALKING, 2502 01:29:49,760 --> 01:29:51,000 BREATHING, HAVING CAREGIVER 2503 01:29:51,000 --> 01:29:52,960 BURDEN AND EVERY EXPERIENCE WERE 2504 01:29:52,960 --> 01:29:54,880 NOT AWARE THEY HAD THE DISEASE, 2505 01:29:54,880 --> 01:29:58,080 DIDN'T KNOW WHAT TO DO, WE 2506 01:29:58,080 --> 01:30:00,000 DIDN'T HAVE GOOD PATHWAYS, 2507 01:30:00,000 --> 01:30:01,160 DIDN'T HAVE AWARENESS, THERE WAS 2508 01:30:01,160 --> 01:30:03,680 STIGMA AND SHAME. 2509 01:30:03,680 --> 01:30:05,160 THE ONLY WAY TO ADDRESS THAT WAS 2510 01:30:05,160 --> 01:30:08,480 GET OUT IN THE COMMUNITY. 2511 01:30:08,480 --> 01:30:15,960 AN AGENCY LOOKING TO IDENTIFY 2512 01:30:15,960 --> 01:30:18,400 BARRIERS AND REACH PEOPLE WE 2513 01:30:18,400 --> 01:30:21,160 FORMED THE AFRICAN AMERICAN 2514 01:30:21,160 --> 01:30:22,760 NETWORK AGAINST ALZHEIMER'S, AND 2515 01:30:22,760 --> 01:30:26,600 LATINO NETWORK, TO BE A VOICE TO 2516 01:30:26,600 --> 01:30:27,400 THOSE POPULATIONS. 2517 01:30:27,400 --> 01:30:29,600 WE BEGAN TO LOOK AT STRATEGIES 2518 01:30:29,600 --> 01:30:31,440 REACHING POPULATIONS INITIALLY 2519 01:30:31,440 --> 01:30:34,640 WITH JUST AWARENESS BECAUSE BACK 2520 01:30:34,640 --> 01:30:36,640 IN 2010 PEOPLE REALLY WEREN'T -- 2521 01:30:36,640 --> 01:30:38,120 THEY WERE DOING ALZHEIMER'S AS 2522 01:30:38,120 --> 01:30:39,560 THE C WORD, THE CANCER WORD, 2523 01:30:39,560 --> 01:30:41,760 DIDN'T WANT TO TALK ABOUT IT. 2524 01:30:41,760 --> 01:30:42,880 EVEN TODAY MEAN PEOPLE STILL 2525 01:30:42,880 --> 01:30:45,600 BELIEVE IT'S A NORMAL PART OF 2526 01:30:45,600 --> 01:30:45,800 AGING. 2527 01:30:45,800 --> 01:30:46,920 THAT BECAME A CORE STRATEGY TO 2528 01:30:46,920 --> 01:30:48,240 GET OUT IN THE COMMUNITIES, 2529 01:30:48,240 --> 01:30:51,400 WE'LL TALK ABOUT WHAT WE DID AND 2530 01:30:51,400 --> 01:30:53,720 BEGIN TO RAISE THIS ISSUE IN 2531 01:30:53,720 --> 01:30:54,000 COMMUNITIES. 2532 01:30:54,000 --> 01:30:55,000 LOOKING AT DATA AND HOW 2533 01:30:55,000 --> 01:30:58,960 IMPORTANT IT IS FOR NOT JUST 2534 01:30:58,960 --> 01:31:00,720 PEOPLE BEING ABLE TO ACCESS 2535 01:31:00,720 --> 01:31:02,800 TREATMENT AND CERTAINLY THE NEW 2536 01:31:02,800 --> 01:31:05,840 TREATMENTS COMING, BUT TO MAKE 2537 01:31:05,840 --> 01:31:06,960 SURE BIOMARKERS INCLUDE PEOPLE 2538 01:31:06,960 --> 01:31:10,320 SO AS WE'RE GOING OUT AND 2539 01:31:10,320 --> 01:31:11,320 DEVELOPING BLOOD TESTS, 2540 01:31:11,320 --> 01:31:16,920 DIFFERENT WAYS OF IDENTIFYING 2541 01:31:16,920 --> 01:31:19,320 DISEASES, INCLUDED A LARGE 2542 01:31:19,320 --> 01:31:20,600 ENOUGH POPULATION, DATA IS 2543 01:31:20,600 --> 01:31:20,920 RELEVANT. 2544 01:31:20,920 --> 01:31:22,360 SAME THING WITH OTHER TESTS LIKE 2545 01:31:22,360 --> 01:31:26,400 A LOT OF TESTS WE DO ARE 2546 01:31:26,400 --> 01:31:28,520 UNFORTUNATELY BIASED AGAINST 2547 01:31:28,520 --> 01:31:29,800 PEOPLE WHO HAVE A CERTAIN 2548 01:31:29,800 --> 01:31:32,680 READING LEVEL OR HEALTH LITERACY 2549 01:31:32,680 --> 01:31:32,880 LEVEL. 2550 01:31:32,880 --> 01:31:34,400 WE WORK WITH THEM TO USE THE 2551 01:31:34,400 --> 01:31:35,960 RIGHT KINDS OF WORDS, TO MAKE 2552 01:31:35,960 --> 01:31:38,360 SURE PEOPLE HAVE AN OPPORTUNITY 2553 01:31:38,360 --> 01:31:40,440 TO GET THE EQUITY, TO ACCESS THE 2554 01:31:40,440 --> 01:31:41,920 KNOWLEDGE, GET THE RIGHT 2555 01:31:41,920 --> 01:31:43,440 DIAGNOSTICS, AT THE RIGHT TIME, 2556 01:31:43,440 --> 01:31:46,280 IN THE COMMUNITY, WITH THE RIGHT 2557 01:31:46,280 --> 01:31:46,480 VOICES. 2558 01:31:46,480 --> 01:31:48,240 THAT BECAME THE CORE OF OUR 2559 01:31:48,240 --> 01:31:50,840 ORGANIZATION, AN EQUITY FOCUS. 2560 01:31:50,840 --> 01:31:53,120 WE INCLUDED WOMEN IN OURS. 2561 01:31:53,120 --> 01:31:55,200 AND IT WAS REALLY IMPORTANT 2562 01:31:55,200 --> 01:31:57,080 BECAUSE GENETICALLY WE'RE SEEING 2563 01:31:57,080 --> 01:32:01,280 DIFFERENCES IN WOMEN AS WE ARE 2564 01:32:01,280 --> 01:32:03,400 THE GENETICS OF AFRICAN 2565 01:32:03,400 --> 01:32:06,600 AMERICANS AND LATINOS AS WELL AS 2566 01:32:06,600 --> 01:32:06,800 OTHERS. 2567 01:32:06,800 --> 01:32:08,000 >>THANK YOU. 2568 01:32:08,000 --> 01:32:10,960 THAT WAS A WONDERFUL INTRO TO 2569 01:32:10,960 --> 01:32:13,160 THINKING ABOUT THE IMPORTANT 2570 01:32:13,160 --> 01:32:15,640 PRINCIPLES FOR WHY WE FOCUS ON 2571 01:32:15,640 --> 01:32:17,240 ADVANCING HEALTH EQUITIES, SOME 2572 01:32:17,240 --> 01:32:19,280 OF THE COMMUNITY ENGAGEMENT 2573 01:32:19,280 --> 01:32:22,360 PRINCIPLES WE WANT TO 2574 01:32:22,360 --> 01:32:23,320 INCORPORATE ABOUT INCLUDING 2575 01:32:23,320 --> 01:32:25,480 BIDIRECTIONAL COMMUNICATION AND 2576 01:32:25,480 --> 01:32:26,600 UNDERSTANDING THE EDUCATION OF 2577 01:32:26,600 --> 01:32:29,240 THE COMMUNITY AND THE BELIEF AND 2578 01:32:29,240 --> 01:32:30,240 CULTURE BEHIND THAT. 2579 01:32:30,240 --> 01:32:33,480 SO I'D LIKE US TO THINK NOW AND 2580 01:32:33,480 --> 01:32:35,720 TALK ABOUT SOME REAL WORLD 2581 01:32:35,720 --> 01:32:37,440 EXAMPLES THAT YOU'VE UTILIZED IN 2582 01:32:37,440 --> 01:32:38,800 YOUR COMPANIES AND ORGANIZATIONS 2583 01:32:38,800 --> 01:32:40,200 TO REALLY APPLY THE KNOWLEDGE 2584 01:32:40,200 --> 01:32:42,040 THAT WE HAVE IN UNDERSTANDING 2585 01:32:42,040 --> 01:32:45,320 HOW TO DIVERSIFY SO IF YOU COULD 2586 01:32:45,320 --> 01:32:49,360 PROVIDE A CASE EXAMPLE IN YOUR 2587 01:32:49,360 --> 01:32:51,680 PARTICULAR EXAMPLE THEN THAT 2588 01:32:51,680 --> 01:32:52,880 WOULD BE GREAT. 2589 01:32:52,880 --> 01:32:55,360 WE'LL START WITH MS. MONROE. 2590 01:32:55,360 --> 01:32:56,720 LET'S FOLLOW UP ON THE 2591 01:32:56,720 --> 01:32:58,040 CONVERSATION YOU WERE HAVING 2592 01:32:58,040 --> 01:33:01,880 EARLY ABOUT ENGAGING THE 2593 01:33:01,880 --> 01:33:02,120 COMMUNITY. 2594 01:33:02,120 --> 01:33:04,760 >>SO, I SHOULD SAY I'M A LAWYER 2595 01:33:04,760 --> 01:33:05,760 BY TRAINING. 2596 01:33:05,760 --> 01:33:08,040 I'M A PUBLIC POLICY PERSON, 25 2597 01:33:08,040 --> 01:33:12,200 YEARS ON CAPITOL HILL. 2598 01:33:12,200 --> 01:33:14,280 AND HAVE NO PARTICULAR IDEAS 2599 01:33:14,280 --> 01:33:15,920 ABOUT HOW TO REACH COMMUNITIES 2600 01:33:15,920 --> 01:33:17,440 EXCEPT WHAT I KNEW WORKED FOR ME 2601 01:33:17,440 --> 01:33:18,600 AND IN MY FAMILY. 2602 01:33:18,600 --> 01:33:20,440 I GREW UP IN BALTIMORE. 2603 01:33:20,440 --> 01:33:21,640 WORKED IN D.C. 2604 01:33:21,640 --> 01:33:23,480 I LIVE IN VIRGINIA. 2605 01:33:23,480 --> 01:33:25,120 MY BROTHER'S A DOCTOR. 2606 01:33:25,120 --> 01:33:28,280 WE OFTEN JUST BANTER ABOUT THESE 2607 01:33:28,280 --> 01:33:29,360 CONVERSATIONS. 2608 01:33:29,360 --> 01:33:32,120 AND IT SEEMED TO ME THAT, YOU 2609 01:33:32,120 --> 01:33:34,000 KNOW, IF SOMEONE INVITED ME TO A 2610 01:33:34,000 --> 01:33:35,480 LECTURE ABOUT A DISEASE AND 2611 01:33:35,480 --> 01:33:38,160 RAISING AWARENESS I WOULD BE 2612 01:33:38,160 --> 01:33:39,160 LIKE, NO. 2613 01:33:39,160 --> 01:33:41,000 IF SOMEONE INVITED ME TO COME 2614 01:33:41,000 --> 01:33:45,800 MAYBE TO AN ICE CREAM SOCIAL, AS 2615 01:33:45,800 --> 01:33:48,160 I'M EATING MY CHOCOLATE DIP ICE 2616 01:33:48,160 --> 01:33:49,960 CREAM, AND THEY WANT TO TALK TO 2617 01:33:49,960 --> 01:33:52,600 ME ABOUT HOW BAD SUGAR IS, I 2618 01:33:52,600 --> 01:33:54,040 WOULD STILL SAY NO. 2619 01:33:54,040 --> 01:33:56,000 BUT IF THEY INVITED ME TO A 2620 01:33:56,000 --> 01:33:57,440 PLAY, SOMETHING WHERE I COULD 2621 01:33:57,440 --> 01:34:00,160 BRING MY FRIENDS, MAYBE IT WAS 2622 01:34:00,160 --> 01:34:04,000 FREE, FELT LIKE A RED CARPET 2623 01:34:04,000 --> 01:34:05,440 EVENT, MUSIC, MAYBE GOSPEL, 2624 01:34:05,440 --> 01:34:08,160 LAUGHTER, OKAY, LET'S DO THAT. 2625 01:34:08,160 --> 01:34:12,000 SO WORKED WITH A PLAYWRIGHT, 2626 01:34:12,000 --> 01:34:16,720 DEVELOPED A PLAY CALLED "FORGET 2627 01:34:16,720 --> 01:34:20,560 ME NOT," TAKING IT TO 27 CITIES, 2628 01:34:20,560 --> 01:34:22,280 REACHED 40,000 PEOPLE. 2629 01:34:22,280 --> 01:34:24,280 SURVEYED PEOPLE THERE, TO FIND 2630 01:34:24,280 --> 01:34:25,360 OUT ABOUT THEIR EXPERIENCE. 2631 01:34:25,360 --> 01:34:26,920 WHAT THEY KNEW. 2632 01:34:26,920 --> 01:34:29,760 ONE OF THE FIRST QUESTIONS WE 2633 01:34:29,760 --> 01:34:30,960 ASKED HAS YOUR DOCTOR EVER 2634 01:34:30,960 --> 01:34:33,040 TALKED TO YOU ABOUT BRAIN 2635 01:34:33,040 --> 01:34:33,640 HEALTH? 2636 01:34:33,640 --> 01:34:33,800 NO. 2637 01:34:33,800 --> 01:34:34,360 OVERWHELMING, NO. 2638 01:34:34,360 --> 01:34:36,760 NO ONE TALKED TO ME ABOUT IT. 2639 01:34:36,760 --> 01:34:39,040 WOULD YOU BE INTERESTED IN 2640 01:34:39,040 --> 01:34:39,880 PARTICIPATING IN CLINICAL 2641 01:34:39,880 --> 01:34:41,680 RESEARCH THAT COULD HELP YOU, 2642 01:34:41,680 --> 01:34:43,440 YOUR FAMILY MEMBERS, HELP 2643 01:34:43,440 --> 01:34:44,960 SOCIETY LEARN MORE ABOUT THIS 2644 01:34:44,960 --> 01:34:47,160 DISEASE AND WHAT THE LIKED LIKE? 2645 01:34:47,160 --> 01:34:49,160 80% SAID YEAH, WE'D BE 2646 01:34:49,160 --> 01:34:50,320 INTERESTED IN LEARNING ABOUT 2647 01:34:50,320 --> 01:34:50,640 THAT. 2648 01:34:50,640 --> 01:34:53,000 I ASKED HAS ANYONE EVER ASKED 2649 01:34:53,000 --> 01:34:55,800 YOU TO PARTICIPATE IN CLINICAL 2650 01:34:55,800 --> 01:34:56,160 RESEARCH? 2651 01:34:56,160 --> 01:34:58,560 EVERYBODY TALKS ABOUT HOW BLACKS 2652 01:34:58,560 --> 01:35:01,200 WON'T PARTICIPATE, LATINOS WON'T 2653 01:35:01,200 --> 01:35:01,600 PARTICIPATE. 2654 01:35:01,600 --> 01:35:02,400 80% OF PEOPLE SAID THEY HAD 2655 01:35:02,400 --> 01:35:03,400 NEVER BEEN ASKED. 2656 01:35:03,400 --> 01:35:06,240 WE CAN DEAL WITH THAT, RIGHT? 2657 01:35:06,240 --> 01:35:08,000 WE TO GET INDUSTRY AND 2658 01:35:08,000 --> 01:35:09,640 PHYSICIANS COMFORTABLE WITH 2659 01:35:09,640 --> 01:35:10,400 RAISING THAT ISSUE. 2660 01:35:10,400 --> 01:35:12,040 FEEL LIKE THEY ARE PARTNERS. 2661 01:35:12,040 --> 01:35:15,680 WE EMPLOYED THAT STRATEGY USING 2662 01:35:15,680 --> 01:35:17,760 OUR PLAY, BROUGHT INFORMATION TO 2663 01:35:17,760 --> 01:35:19,600 THE COMMUNITY, PARTNERED WITH 2664 01:35:19,600 --> 01:35:20,880 THE COMMUNITIES, ASKED THEM WHAT 2665 01:35:20,880 --> 01:35:24,120 THEY WOULD LIKE TO SEE AS PART 2666 01:35:24,120 --> 01:35:25,200 OF THIS, BROUGHT IN LOCAL 2667 01:35:25,200 --> 01:35:26,920 SERVICES, BECAUSE WE'RE NOT A 2668 01:35:26,920 --> 01:35:28,680 LOCAL ORGANIZATION. 2669 01:35:28,680 --> 01:35:34,240 WE PROVIDED A PLATFORM, PROVIDED 2670 01:35:34,240 --> 01:35:35,440 ENTERTAINMENT, PROVIDED FOOD, 2671 01:35:35,440 --> 01:35:37,680 GATHERED PARTNERS TOGETHER SO IT 2672 01:35:37,680 --> 01:35:39,200 BECAME THEIR EVENT. 2673 01:35:39,200 --> 01:35:41,600 THEY DON'T KNOW ME, I'M 2674 01:35:41,600 --> 01:35:43,360 WASHINGTON, D.C. 2675 01:35:43,360 --> 01:35:45,320 IF I BRING THEM THIS STUFF, 2676 01:35:45,320 --> 01:35:46,400 OKAY, RIGHT. 2677 01:35:46,400 --> 01:35:47,920 WE LEFT BEHIND PARTNERS TO WORK 2678 01:35:47,920 --> 01:35:49,280 TOGETHER. 2679 01:35:49,280 --> 01:35:51,240 IT WAS VERY EFFECTIVE. 2680 01:35:51,240 --> 01:35:54,520 DOING SOMETHING YOU WOULD LIKE 2681 01:35:54,520 --> 01:35:55,600 TO DO, AND RECEIVING INFORMATION 2682 01:35:55,600 --> 01:35:57,600 LIKE YOU WOULD LIKE TO RECEIVE 2683 01:35:57,600 --> 01:35:59,320 IT, INCLUDE PEOPLE WHO LOOK LIKE 2684 01:35:59,320 --> 01:36:01,280 THE PEOPLE YOU'RE TRYING TO 2685 01:36:01,280 --> 01:36:03,800 REACH, MAKING IT REALLY FUN AND 2686 01:36:03,800 --> 01:36:06,160 INFORMATIONAL, AND NOT JUST SAY 2687 01:36:06,160 --> 01:36:07,720 HERE'S A PRESCRIPTION, SEE 'YA 2688 01:36:07,720 --> 01:36:10,360 LATER, THAT WILL BE VERY 2689 01:36:10,360 --> 01:36:13,760 EFFECTIVE. 2690 01:36:13,760 --> 01:36:15,640 >>THANK YOU, FANTASTIC EXAMPLE 2691 01:36:15,640 --> 01:36:16,840 OF ENGAGING THE COMMUNITY, 2692 01:36:16,840 --> 01:36:18,240 WORKING WITH THE LOCAL 2693 01:36:18,240 --> 01:36:18,560 PARTNERSHIPS. 2694 01:36:18,560 --> 01:36:20,720 I HEARD A LOT OF THIS AS WE WERE 2695 01:36:20,720 --> 01:36:22,920 GOING THROUGH THIS IN THE 2696 01:36:22,920 --> 01:36:24,200 NON-PROFIT SESSION. 2697 01:36:24,200 --> 01:36:29,080 REALLY IN LINE WITH WHAT WE'RE 2698 01:36:29,080 --> 01:36:29,520 HEARING. 2699 01:36:29,520 --> 01:36:29,960 DR. THEODORE? 2700 01:36:29,960 --> 01:36:31,040 >>SURE. 2701 01:36:31,040 --> 01:36:35,000 I MIGHT PUT CONTEXT BY SAYING 2702 01:36:35,000 --> 01:36:35,920 FROM OUR PERSPECTIVE IF WE 2703 01:36:35,920 --> 01:36:37,400 CONTINUE TO DO THE SAME THINGS 2704 01:36:37,400 --> 01:36:39,040 WE'VE DONE FOR A CENTURY OR SO 2705 01:36:39,040 --> 01:36:41,840 WE'LL END UP WITH ROUGHLY THE 2706 01:36:41,840 --> 01:36:42,880 SAME RESULTS. 2707 01:36:42,880 --> 01:36:44,640 AND SO FUNDAMENTALLY WE'VE TRIED 2708 01:36:44,640 --> 01:36:47,040 TO TAKE NEW STRATEGIES FOR 2709 01:36:47,040 --> 01:36:48,560 REACHING PATIENTS, MAKING SURE 2710 01:36:48,560 --> 01:36:49,640 WE'RE BEING INCLUSIVE IN 2711 01:36:49,640 --> 01:36:50,720 CLINICAL RESEARCH, BUT IN ORDER 2712 01:36:50,720 --> 01:36:53,560 TO TAKE A NEW STRATEGY WE NEED 2713 01:36:53,560 --> 01:36:55,000 TO HEAR FROM WELL-INFORMED 2714 01:36:55,000 --> 01:36:55,320 VOICES. 2715 01:36:55,320 --> 01:36:59,760 SO WE NEED TO CREATE 2716 01:36:59,760 --> 01:37:01,360 CONSORTIUMS, CREATE ALIGNMENTS 2717 01:37:01,360 --> 01:37:02,160 AMONG NON-PROFITS, PATIENT 2718 01:37:02,160 --> 01:37:05,600 ADVOCACY GROUPS, AND GO OUT TO 2719 01:37:05,600 --> 01:37:06,560 CLINICAL TRIALS CENTERS, FOR 2720 01:37:06,560 --> 01:37:08,000 EXAMPLE, WITH A PROVEN HISTORY 2721 01:37:08,000 --> 01:37:10,400 IN MEETING NEEDS OF 2722 01:37:10,400 --> 01:37:11,360 TRADITIONALLY UNDERSERVED 2723 01:37:11,360 --> 01:37:11,640 POPULATIONS. 2724 01:37:11,640 --> 01:37:13,800 SO, ONE OF THE EFFORTS THAT WE 2725 01:37:13,800 --> 01:37:15,640 LAUNCHED NOW GOING ON THREE 2726 01:37:15,640 --> 01:37:18,920 YEARS AGO WAS A SITE ALLIANCE, 2727 01:37:18,920 --> 01:37:19,480 CLINICAL TRIAL SITES 2728 01:37:19,480 --> 01:37:22,640 SPECIFICALLY WITH A TRACK RECORD 2729 01:37:22,640 --> 01:37:23,880 OF REACHING PRIMARILY HISPANIC, 2730 01:37:23,880 --> 01:37:25,400 AFRICAN AMERICAN, RURAL POOR 2731 01:37:25,400 --> 01:37:26,040 PATIENTS, SO WE ESSENTIALLY 2732 01:37:26,040 --> 01:37:27,280 WOULD BE GETTING NOT ONLY CLOSER 2733 01:37:27,280 --> 01:37:30,320 TO THE PATIENTS WE WANTED TO 2734 01:37:30,320 --> 01:37:31,920 ADDRESS BUT BY INTERACTING 2735 01:37:31,920 --> 01:37:33,760 DIRECTLY WITH THE PRINCIPAL 2736 01:37:33,760 --> 01:37:35,880 INVESTIGATORS WOULD START TO GET 2737 01:37:35,880 --> 01:37:36,960 INSIGHTS ABOUT WHAT WERE WE 2738 01:37:36,960 --> 01:37:38,520 MISSING IN ADDRESSING NEEDS OF 2739 01:37:38,520 --> 01:37:40,720 PATIENTS TO BE MORE INCLUSIVE 2740 01:37:40,720 --> 01:37:41,800 WITH RESPECT TO OUR CLINICAL 2741 01:37:41,800 --> 01:37:42,440 TRIAL EFFORTS. 2742 01:37:42,440 --> 01:37:45,760 I WOULD SAY ONE OF THE FIRST 2743 01:37:45,760 --> 01:37:47,400 STRATEGIES BROADLY SPEAKING WAS 2744 01:37:47,400 --> 01:37:49,880 TO BE MORE OPEN TO LISTEN MORE 2745 01:37:49,880 --> 01:37:51,120 DIRECTLY, REALLY FROM PEOPLE WHO 2746 01:37:51,120 --> 01:37:53,400 HAD BOOTS ON THE GROUND AND 2747 01:37:53,400 --> 01:37:54,640 ADDRESSING NEEDS OF 2748 01:37:54,640 --> 01:37:55,160 TRADITIONALLY UNDERSERVED 2749 01:37:55,160 --> 01:38:02,520 POPULATIONS. 2750 01:38:02,520 --> 01:38:06,680 >>AT LILLY WE PROVIDE OURSELVES 2751 01:38:06,680 --> 01:38:09,560 ON BEING BOLD, FAST, CLEAR. 2752 01:38:09,560 --> 01:38:11,280 DURING COVID, HEIGHT OF COVID, 2753 01:38:11,280 --> 01:38:13,040 WE WERE COMMITTED TO MAKING SURE 2754 01:38:13,040 --> 01:38:14,360 THAT WE PROVIDED ACCESS TO 2755 01:38:14,360 --> 01:38:19,280 CLINICAL TRIALS FOR VULNERABLE 2756 01:38:19,280 --> 01:38:20,600 POPULATIONS, THE FISSURES WE 2757 01:38:20,600 --> 01:38:22,560 KNOW TO BE CHASMS, FOCUS ON 2758 01:38:22,560 --> 01:38:24,280 TAKING CARE TO PEOPLE LIVING IN 2759 01:38:24,280 --> 01:38:26,600 NURSING HOMES, TO ENSURE WE WERE 2760 01:38:26,600 --> 01:38:30,240 ABLE TO CONDUCT CLINICAL TRIALS 2761 01:38:30,240 --> 01:38:30,880 THERE. 2762 01:38:30,880 --> 01:38:41,280 THE IDEA WAS TO OUTFIT A 2763 01:38:42,240 --> 01:38:44,000 RECREATION VEHICLE AND DRIVE TO 2764 01:38:44,000 --> 01:38:45,160 NURSING HOMES. 2765 01:38:45,160 --> 01:38:46,360 ONE WITH A DIVERSE POPULATION, 2766 01:38:46,360 --> 01:38:48,640 THE AMOUNT OF TRUST BEING 2767 01:38:48,640 --> 01:38:51,440 INVITED CREATED AN OPPORTUNITY 2768 01:38:51,440 --> 01:38:53,800 WE WANTED TO CONTINUE. 2769 01:38:53,800 --> 01:38:57,320 WE'VE EVOLVED OUR MOBILE 2770 01:38:57,320 --> 01:39:00,280 RESEARCH UNIT, NOW VERSION 3, TO 2771 01:39:00,280 --> 01:39:01,200 CONDUCT PRE-SCREENING, 2772 01:39:01,200 --> 01:39:02,680 SCREENING, LABS, DRIVE ACROSS 2773 01:39:02,680 --> 01:39:04,000 THE COUNTRY, ALSO ABILITY 2774 01:39:04,000 --> 01:39:06,720 FOCUSED ON PATIENTS LIVING WITH 2775 01:39:06,720 --> 01:39:08,120 DISABILITIES TO SORT OF TAKE 2776 01:39:08,120 --> 01:39:09,080 THINGS INSIDE THE MOBILE 2777 01:39:09,080 --> 01:39:11,160 RESEARCH UNIT AND PUT THEM 2778 01:39:11,160 --> 01:39:14,760 OUTSIDE SO PEOPLE HAVE NO ISSUE 2779 01:39:14,760 --> 01:39:16,600 ACCESSING THE UNIT. 2780 01:39:16,600 --> 01:39:18,680 WE'RE BEING INVITED TO LEVERAGE 2781 01:39:18,680 --> 01:39:19,600 UNITS FOR PRE-SCREENING ACROSS 2782 01:39:19,600 --> 01:39:20,560 MULTIPLE CLINICAL TRIALS. 2783 01:39:20,560 --> 01:39:22,840 SO WE CONTINUE TO TRY TO DO 2784 01:39:22,840 --> 01:39:25,600 THOSE THINGS, GET IN THOSE 2785 01:39:25,600 --> 01:39:25,840 SPACES. 2786 01:39:25,840 --> 01:39:27,440 NOT EVERY OPPORTUNITY IS GOING 2787 01:39:27,440 --> 01:39:28,240 TO BE SUCCESSFUL. 2788 01:39:28,240 --> 01:39:30,400 PART OF THE JOURNEY IS TO FAIL 2789 01:39:30,400 --> 01:39:34,680 FAST AND BE IN THE RIGHT SPACES. 2790 01:39:34,680 --> 01:39:37,280 AS A SMALL EXAMPLE, LAST WEEK WE 2791 01:39:37,280 --> 01:39:38,920 HAD THE INDIANA BLACK AND 2792 01:39:38,920 --> 01:39:40,800 MINORITY HEALTH FAIR, IN THE 2793 01:39:40,800 --> 01:39:43,760 CITY OF INDIANAPOLIS, STATE OF 2794 01:39:43,760 --> 01:39:45,360 INDIANA, WE'RE WELL KNOWN. 2795 01:39:45,360 --> 01:39:46,320 WE'RE GOOD CORPORATE SPONSORS, 2796 01:39:46,320 --> 01:39:47,360 DOING THE THINGS WE'RE SUPPOSED 2797 01:39:47,360 --> 01:39:48,200 TO DO. 2798 01:39:48,200 --> 01:39:56,000 UNTIL LAST YEAR WOULD SHOW UP 84 2799 01:39:56,000 --> 01:39:57,960 VENDORS, WE WOULD SHOW UP AND 2800 01:39:57,960 --> 01:39:59,400 PASS OUT BAGS. 2801 01:39:59,400 --> 01:40:01,360 WE'RE AT A HEALTH FAIR. 2802 01:40:01,360 --> 01:40:03,120 WHY ARE WE NOT LEVERAGING 2803 01:40:03,120 --> 01:40:06,520 INNOVATION TO DO SOME SCREENING? 2804 01:40:06,520 --> 01:40:07,800 I APPROACHED LEGAL COLLEAGUES, I 2805 01:40:07,800 --> 01:40:09,160 PICK TWO FIGHTS A WEEK WITH 2806 01:40:09,160 --> 01:40:11,440 PEOPLE I SHOULD SAY. 2807 01:40:11,440 --> 01:40:12,560 ONLY BECAUSE I'M TRYING TO 2808 01:40:12,560 --> 01:40:14,080 CHALLENGE US TO DO THINGS 2809 01:40:14,080 --> 01:40:15,160 DIFFERENT, NOT THAT WE'RE AT 2810 01:40:15,160 --> 01:40:15,480 ODDS. 2811 01:40:15,480 --> 01:40:18,680 THEY HAVE A WAY OF OPERATING. 2812 01:40:18,680 --> 01:40:19,640 WE'RE COGNIZANT OF REGULATORY 2813 01:40:19,640 --> 01:40:22,400 ENVIRONMENT AND WE NEED TO MOVE 2814 01:40:22,400 --> 01:40:23,280 THE SPEED. 2815 01:40:23,280 --> 01:40:24,800 CAN WE LEVERAGE OUR MOBILE 2816 01:40:24,800 --> 01:40:26,600 RESEARCH UNIT TO DO 2817 01:40:26,600 --> 01:40:28,760 PRE-SCREENING NEXT TO THE 2818 01:40:28,760 --> 01:40:29,160 GIVEAWAYS? 2819 01:40:29,160 --> 01:40:31,640 NO, THAT LOOKS LIKE PATIENT 2820 01:40:31,640 --> 01:40:32,080 INCENTIVIZATION. 2821 01:40:32,080 --> 01:40:34,120 I WENT TO CORPORATE TEAM, WE'RE 2822 01:40:34,120 --> 01:40:37,280 GOING TO GET RID OF THIS TO 2823 01:40:37,280 --> 01:40:38,840 TRADITIONAL VOLUNTEERS, WE NEED 2824 01:40:38,840 --> 01:40:41,080 TO SHOW UP AND DO PRE-SCREENING, 2825 01:40:41,080 --> 01:40:41,880 CLINICAL TRIAL GENERAL EDUCATION 2826 01:40:41,880 --> 01:40:44,000 AND SCREENING AND HELP THE 2827 01:40:44,000 --> 01:40:45,920 COMMUNITY. 2828 01:40:45,920 --> 01:40:47,520 WE DID A PANEL THAT FROM MY 2829 01:40:47,520 --> 01:40:48,400 ESTIMATION FAILED. 2830 01:40:48,400 --> 01:40:51,360 THERE WAS TRAFFIC, MOST PANELS 2831 01:40:51,360 --> 01:40:51,800 FAILED. 2832 01:40:51,800 --> 01:40:55,520 THE FAILURE THAT PRECEDE US WAS 2833 01:40:55,520 --> 01:40:56,720 HEALTHY COOKING ON JAMBALAYA, 2834 01:40:56,720 --> 01:41:00,040 WELL ATTENDED. 2835 01:41:00,040 --> 01:41:02,960 THEY LEFT, WE DIDN'T HAVE THE 2836 01:41:02,960 --> 01:41:03,560 SAME DRAW. 2837 01:41:03,560 --> 01:41:06,680 BUT WE WERE IN THE SPACE. 2838 01:41:06,680 --> 01:41:08,840 I GO BACK, HEY, THIS IS HOW IT 2839 01:41:08,840 --> 01:41:12,480 WENT, WE START PLANNING FOR NEXT 2840 01:41:12,480 --> 01:41:13,120 YEAR. 2841 01:41:13,120 --> 01:41:15,200 HOW DO WE PARTNER DIFFERENTLY 2842 01:41:15,200 --> 01:41:15,800 WITH THE INDIANA STATE 2843 01:41:15,800 --> 01:41:17,640 DEPARTMENT OF HEALTH TO MAKE 2844 01:41:17,640 --> 01:41:19,920 SURE YEARS FROM NOW EVENTS ARE 2845 01:41:19,920 --> 01:41:23,480 WELL OILED, WELL TAILORED. 2846 01:41:23,480 --> 01:41:25,080 THAT'S HOW WE SHOULD BE 2847 01:41:25,080 --> 01:41:27,360 DEPLOYING VERSUS SHOWING UP AND 2848 01:41:27,360 --> 01:41:30,640 SAYING HI, WE'RE LILLY. 2849 01:41:30,640 --> 01:41:32,760 THANK YOU. 2850 01:41:32,760 --> 01:41:34,800 EXCELLENT EXAMPLE AS WELL. 2851 01:41:34,800 --> 01:41:36,440 THIS REMINDS ME OF THE COMMENT 2852 01:41:36,440 --> 01:41:38,880 MADE FROM THE PREVIOUS PANELISTS 2853 01:41:38,880 --> 01:41:41,160 ABOUT THE GIVEBACK, RIGHT? 2854 01:41:41,160 --> 01:41:43,360 AND THAT IS A TANGIBLE BENEFIT 2855 01:41:43,360 --> 01:41:45,200 BRINGING THE PRE-SCREENING TO 2856 01:41:45,200 --> 01:41:46,680 THAT HEALTH FAIR INSTEAD OF 2857 01:41:46,680 --> 01:41:48,520 PASSING OUT INFORMATION. 2858 01:41:48,520 --> 01:41:50,560 HOW ARE YOU CREATING 2859 01:41:50,560 --> 01:41:52,320 BIDIRECTIONAL COMMUNICATION AND 2860 01:41:52,320 --> 01:41:53,440 PROVIDING A BENEFIT TO THE 2861 01:41:53,440 --> 01:41:54,960 COMMUNITY THAT YOU WISH TO SERVE 2862 01:41:54,960 --> 01:41:58,400 AND BRING INTO THESE STUDIES? 2863 01:41:58,400 --> 01:42:00,360 NOW WE'VE TOUCHED ON SOME OF THE 2864 01:42:00,360 --> 01:42:02,120 BIG CHALLENGES AND BARRIERS. 2865 01:42:02,120 --> 01:42:04,400 I HEARD TRUST AS AN ISSUE. 2866 01:42:04,400 --> 01:42:06,520 WE KNOW THAT'S ABSOLUTELY AN 2867 01:42:06,520 --> 01:42:06,840 ISSUE. 2868 01:42:06,840 --> 01:42:09,360 I'VE HEARD ACCESS AS AN ISSUE. 2869 01:42:09,360 --> 01:42:12,440 MAYBE IN THE NEXT SEGMENT WE CAN 2870 01:42:12,440 --> 01:42:15,040 JUST TALK ABOUT WHAT YOU SEE AS 2871 01:42:15,040 --> 01:42:16,560 KEY BARRIERS AND CHALLENGES IN 2872 01:42:16,560 --> 01:42:18,880 TRYING TO DO YOUR JOBS, TRYING 2873 01:42:18,880 --> 01:42:21,480 TO INCREASE DIVERSITY AND 2874 01:42:21,480 --> 01:42:22,800 INCLUSION AND ENGAGE THOSE 2875 01:42:22,800 --> 01:42:23,240 COMMUNITIES. 2876 01:42:23,240 --> 01:42:25,680 AGAIN, YOU GAVE SOME EXAMPLES. 2877 01:42:25,680 --> 01:42:27,320 IF YOU HAVE SOME MORE, LOVE TO 2878 01:42:27,320 --> 01:42:28,320 HEAR THOSE. 2879 01:42:28,320 --> 01:42:30,360 MAYBE WE'LL START WITH DR. 2880 01:42:30,360 --> 01:42:31,720 THEODORE AND GO DOWN. 2881 01:42:31,720 --> 01:42:33,440 >>I'LL KEEP IT SIMPLE. 2882 01:42:33,440 --> 01:42:35,160 I THINK IN MANY HEALTH CARE 2883 01:42:35,160 --> 01:42:37,240 SYSTEMS THERE ARE SIGNIFICANT 2884 01:42:37,240 --> 01:42:39,680 BIASES AGAINST POPULATIONS OF 2885 01:42:39,680 --> 01:42:41,760 PATIENTS, OFTEN MANIFEST IN NOT 2886 01:42:41,760 --> 01:42:43,400 BEING ASKED TO ENGAGE IN 2887 01:42:43,400 --> 01:42:44,240 CLINICAL TRIALS, PRESUMPTIONS 2888 01:42:44,240 --> 01:42:46,120 MADE ABOUT VARIOUS GROUPS OF 2889 01:42:46,120 --> 01:42:48,280 PATIENTS, AS A CONSEQUENCE 2890 01:42:48,280 --> 01:42:50,040 RELATIVE REPRESENTATION IN 2891 01:42:50,040 --> 01:42:52,880 CLINICAL TRIALS IS OFTEN BELOW 2892 01:42:52,880 --> 01:42:54,200 WHAT WE ANTICIPATE. 2893 01:42:54,200 --> 01:42:56,480 ONE FUNDAMENTAL LEVEL THERE ARE 2894 01:42:56,480 --> 01:42:57,360 SIGNIFICANT BIASES INSIDE THE 2895 01:42:57,360 --> 01:42:58,720 HEALTH CARE SYSTEM WE'RE TRYING 2896 01:42:58,720 --> 01:43:01,880 TO ADDRESS THROUGH HEALTH CARE 2897 01:43:01,880 --> 01:43:03,320 PROVIDER EDUCATION, THROUGH 2898 01:43:03,320 --> 01:43:06,680 VARIOUS FORMS OF BIAS TRAINING, 2899 01:43:06,680 --> 01:43:08,960 WE'VE ENGAGED IN WITH OUR 2900 01:43:08,960 --> 01:43:10,760 CLINICAL TRIALS SPECIALISTS. 2901 01:43:10,760 --> 01:43:13,480 BUT BEYOND THAT, I THINK THERE 2902 01:43:13,480 --> 01:43:15,880 ARE OFTEN SIGNIFICANT FINANCIAL 2903 01:43:15,880 --> 01:43:17,520 TOXICITIES THAT GO ALONG WITH 2904 01:43:17,520 --> 01:43:19,040 CLINICAL TRIALS. 2905 01:43:19,040 --> 01:43:21,920 WE TAKE IT FOR GRANTED THAT 2906 01:43:21,920 --> 01:43:24,880 PATIENTS WHEN ASKED ABOUT HAVE 2907 01:43:24,880 --> 01:43:26,160 THE CAPACITY TO PARTICIPATE. 2908 01:43:26,160 --> 01:43:27,680 FOR EXAMPLE, THEY MAY BE ASKED 2909 01:43:27,680 --> 01:43:32,440 TO COME IN EXTRA TIME FOR CT 2910 01:43:32,440 --> 01:43:34,120 SCANS AND MRIs, AS SIMPLE AS 2911 01:43:34,120 --> 01:43:37,480 ASKING THEM TO PAY FOR PARKING 2912 01:43:37,480 --> 01:43:38,160 OR TRAVEL. 2913 01:43:38,160 --> 01:43:39,880 THERE ARE BARRIERS HOW MUCH WE 2914 01:43:39,880 --> 01:43:41,400 CAN FINANCIALLY SUPPORT THE 2915 01:43:41,400 --> 01:43:42,840 PATIENTS, THAT REPRESENTATIVES A 2916 01:43:42,840 --> 01:43:45,680 SIGNIFICANT BARRIER TO MANY 2917 01:43:45,680 --> 01:43:47,000 OFTEN UNDERSERVED MINORITIZED 2918 01:43:47,000 --> 01:43:48,040 MARGINALIZED POPULATIONS. 2919 01:43:48,040 --> 01:43:51,240 WHEN WE PUT SORT OF THE INHERENT 2920 01:43:51,240 --> 01:43:55,000 BIASES IN AND ADD TO FINANCIAL 2921 01:43:55,000 --> 01:43:56,280 TOXICITY, CONSPIRING, FORMS A 2922 01:43:56,280 --> 01:43:58,920 SIGNIFICANT BARRIER FOR 2923 01:43:58,920 --> 01:44:04,160 ENGAGEMENT. 2924 01:44:04,160 --> 01:44:06,320 2925 01:44:06,320 --> 01:44:12,360 >>WE'RE FOCUSED IN THREE AREAS, 2926 01:44:12,360 --> 01:44:13,840 INCREASING UNDERACCESS, 2927 01:44:13,840 --> 01:44:16,320 PARTNERING WITH INVESTIGATORS, 2928 01:44:16,320 --> 01:44:17,640 DIVERSE AND ELEVATING THOSE 2929 01:44:17,640 --> 01:44:19,160 PARTICIPATING IN THE STUDY 2930 01:44:19,160 --> 01:44:20,040 SPECIFICALLY. 2931 01:44:20,040 --> 01:44:25,720 WE KNOW JUST UNDER 6% OF 2932 01:44:25,720 --> 01:44:28,120 PHYSICIANS, BLACK PHYSICIANS, 2933 01:44:28,120 --> 01:44:31,400 EVEN FEWER CLINICAL TRIALISTS, 2934 01:44:31,400 --> 01:44:33,600 BUT THEY PLAY OUTSIZE ROLE IN 2935 01:44:33,600 --> 01:44:33,800 TRUST. 2936 01:44:33,800 --> 01:44:36,880 WE WANT TO GIVE PATIENTS ACCESS 2937 01:44:36,880 --> 01:44:39,080 OR SUPPORTING THEIR ACCESS TO BE 2938 01:44:39,080 --> 01:44:41,920 ABLE TO BE RECRUITED AND 2939 01:44:41,920 --> 01:44:42,600 RETAINED IN STUDIES. 2940 01:44:42,600 --> 01:44:44,960 KNOWING WE HAVE TO WORK WITH 2941 01:44:44,960 --> 01:44:46,520 PHYSICIANS THAT DON'T HAVE THE 2942 01:44:46,520 --> 01:44:51,560 SAME DEMOGRAPHIC MAKEUP AS 2943 01:44:51,560 --> 01:44:53,640 PATIENTS THEY ARE SERVING, WITH 2944 01:44:53,640 --> 01:44:55,120 RESPECT TO COMMUNITY, PART OF 2945 01:44:55,120 --> 01:44:56,480 THE COMMUNITY ENGAGEMENT IS 2946 01:44:56,480 --> 01:45:02,720 PARTNERING WITH THE NETWORK FOR 2947 01:45:02,720 --> 01:45:04,040 HEALTH -- EXCELLENCE IN HEALTH 2948 01:45:04,040 --> 01:45:06,280 INNOVATION OUT OF BOSTON, PARDON 2949 01:45:06,280 --> 01:45:07,360 ME. 2950 01:45:07,360 --> 01:45:09,720 CREATING A COMMUNITY FOCUSED 2951 01:45:09,720 --> 01:45:11,120 RESEARCH ORGANIZATION, ALIGNMENT 2952 01:45:11,120 --> 01:45:12,280 OF 30 STAKEHOLDERS FROM ACROSS 2953 01:45:12,280 --> 01:45:13,440 INDIANA, IN PART BECAUSE IF WE 2954 01:45:13,440 --> 01:45:15,400 CAN'T DO IT IN OUR OWN STATE HOW 2955 01:45:15,400 --> 01:45:18,040 WOULD YOU BELIEVE WE COULD DO IT 2956 01:45:18,040 --> 01:45:20,160 ELSEWHERE? 2957 01:45:20,160 --> 01:45:23,840 WE GET THOSE FOLKS, FAITH 2958 01:45:23,840 --> 01:45:25,280 COMMUNITY, ACADEMIA, QUALIFIED 2959 01:45:25,280 --> 01:45:26,400 HEALTH CENTERS, REPRESENTATIVES 2960 01:45:26,400 --> 01:45:29,560 OF YOUTH ORGANIZATIONS, THE 2961 01:45:29,560 --> 01:45:31,400 LIKE, YMCA, TO COME AND ARRIVE 2962 01:45:31,400 --> 01:45:33,720 AT BARRIERS THAT IF WE OVERCOME, 2963 01:45:33,720 --> 01:45:36,320 ONE, TOGETHER, THAT WOULD ENABLE 2964 01:45:36,320 --> 01:45:38,440 ACCESS ACROSS THE STATE. 2965 01:45:38,440 --> 01:45:39,480 URBAN COMMUNITY, RURAL 2966 01:45:39,480 --> 01:45:41,280 COMMUNITY, YOU PICK, WE HAVE 2967 01:45:41,280 --> 01:45:42,800 ABILITY TO ENABLE ACCESS. 2968 01:45:42,800 --> 01:45:47,280 SOME THINGS THAT SURFACED FROM 2969 01:45:47,280 --> 01:45:48,280 CONVERSATIONS ARE ABOUT MISTRUST 2970 01:45:48,280 --> 01:45:50,120 OF THE HEALTH CARE CONTINUUM OR 2971 01:45:50,120 --> 01:45:51,200 INTERACTION WITH THE SYSTEM. 2972 01:45:51,200 --> 01:45:53,320 WE'RE GOING TO SEND SOMEONE BACK 2973 01:45:53,320 --> 01:45:55,320 TO A SYSTEM THAT'S ROUTINELY 2974 01:45:55,320 --> 01:45:57,800 FAILED THEM TO CONDUCT A 2975 01:45:57,800 --> 01:45:59,320 CLINICAL TRIAL THAT'S HARD. 2976 01:45:59,320 --> 01:46:04,680 THE OTHER PIECE WE'RE GETTING IS 2977 01:46:04,680 --> 01:46:06,120 TRUSTED INTERMEDIARY. 2978 01:46:06,120 --> 01:46:07,560 I HAVE A RESPONSIBILITY, I CAN'T 2979 01:46:07,560 --> 01:46:08,760 BE IN THE COMMUNITY AS MUCH AS 2980 01:46:08,760 --> 01:46:11,400 THEY NEED TO SEE ME. 2981 01:46:11,400 --> 01:46:13,560 PEOPLE FROM THOSE COMMUNITIES, 2982 01:46:13,560 --> 01:46:15,000 ADVOCATES, NAVIGATORS CAN BE 2983 01:46:15,000 --> 01:46:17,400 EMPOWERED WITH INFORMATION THAT 2984 01:46:17,400 --> 01:46:18,840 CAN SUPPORT CONVEYING 2985 01:46:18,840 --> 01:46:20,480 INFORMATION, YESTERDAY WE TALKED 2986 01:46:20,480 --> 01:46:23,440 ABOUT ABOVE INFORMED CONSENT TO 2987 01:46:23,440 --> 01:46:24,560 INCLUSION EXCLUSION CRITERIA, 2988 01:46:24,560 --> 01:46:28,040 THAT EXPLANATION, HOW DO WE 2989 01:46:28,040 --> 01:46:29,240 EMPOWER AND ENGAGE PEOPLE TO 2990 01:46:29,240 --> 01:46:31,000 HAVE THEM FAMILIAR WITH CLINICAL 2991 01:46:31,000 --> 01:46:32,400 TRIALS IN THE PROCESS. 2992 01:46:32,400 --> 01:46:34,080 WE CONTINUE TO SURFACE THOSE 2993 01:46:34,080 --> 01:46:35,600 BARRIERS AND MAKE SURE WE'RE 2994 01:46:35,600 --> 01:46:38,320 ALIGNING ON WHAT THOSE ARE AND 2995 01:46:38,320 --> 01:46:39,320 EMPOWER THOSE PARTICULAR 2996 01:46:39,320 --> 01:46:40,720 COMMUNITY GROUPS THAT REACH 2997 01:46:40,720 --> 01:46:49,560 THEIR OWN COMMUNITY. 2998 01:46:49,560 --> 01:46:51,520 >>ALZHEIMER'S IS A SMALL 2999 01:46:51,520 --> 01:46:55,680 ORGANIZATION, WE PUNCH ABOVE OUR 3000 01:46:55,680 --> 01:46:56,120 WEIGHT. 3001 01:46:56,120 --> 01:46:58,640 I AGREE WITH WHAT THESE GUYS 3002 01:46:58,640 --> 01:47:00,840 HAVE SAID. 3003 01:47:00,840 --> 01:47:04,120 FROM A PATIENT ADVOCACY 3004 01:47:04,120 --> 01:47:06,520 PERSPECTIVE, BUT ONE UNIQUE 3005 01:47:06,520 --> 01:47:12,440 THING IS TOO REALLY USE DATA IN 3006 01:47:12,440 --> 01:47:14,640 A WAY FOR PATIENTS WITH 3007 01:47:14,640 --> 01:47:16,840 ALZHEIMER'S DISEASE. 3008 01:47:16,840 --> 01:47:18,600 WORKING IN PUBLIC POLICY, 3009 01:47:18,600 --> 01:47:20,080 POLITICIANS ARE USED TO SEEING 3010 01:47:20,080 --> 01:47:21,960 LOTS OF RAW NUMBERS BUT YOU HAVE 3011 01:47:21,960 --> 01:47:24,360 TO CHALLENGE THEM TO REMEMBER 3012 01:47:24,360 --> 01:47:27,000 THERE'S AN ACTUAL PERSON WHO HAS 3013 01:47:27,000 --> 01:47:28,960 A LIVED EXPERIENCE THAT GOES 3014 01:47:28,960 --> 01:47:34,640 BEYOND THE PIECE OF PAPER. 3015 01:47:34,640 --> 01:47:35,360 STORY-TELLING AND PROMOTING 3016 01:47:35,360 --> 01:47:37,360 PEOPLE TO COME OUT OF THE 3017 01:47:37,360 --> 01:47:39,160 SHADOWS WE'VE WORKED TO DO, 3018 01:47:39,160 --> 01:47:41,400 CATALOGED IN VIDEOS WE USE. 3019 01:47:41,400 --> 01:47:42,320 WE DEVELOPED A NATIONAL 3020 01:47:42,320 --> 01:47:44,400 ALZHEIMER'S DISEASE INDEX. 3021 01:47:44,400 --> 01:47:46,240 WE'VE USED -- ONE OF THE MOST 3022 01:47:46,240 --> 01:47:50,520 EXCITING THINGS THAT I'VE HAD 3023 01:47:50,520 --> 01:47:52,280 THE PLEASURE OF DEVELOPING, 3024 01:47:52,280 --> 01:47:53,720 USING MEDICARE DATA SINCE MOST 3025 01:47:53,720 --> 01:47:56,320 DIAGNOSED WITH ALZHEIMER'S ARE 3026 01:47:56,320 --> 01:47:57,440 ON MEDICARE, ABLE TO IDENTIFY 3027 01:47:57,440 --> 01:48:03,440 DOWN TO A ZIP CODE LEVEL WHERE 3028 01:48:03,440 --> 01:48:04,960 PEOPLE LIVE WHO HAVE BEEN 3029 01:48:04,960 --> 01:48:05,840 DIAGNOSED WITH ALZHEIMER'S 3030 01:48:05,840 --> 01:48:06,960 DISEASE, MAP AND CREATE 3031 01:48:06,960 --> 01:48:08,160 CONGRESSIONAL REPORT WHERE WE 3032 01:48:08,160 --> 01:48:09,640 CAN SHOW HERE'S YOUR DISTRICT, 3033 01:48:09,640 --> 01:48:12,000 HERE'S THE NUMBER OF PEOPLE WHO 3034 01:48:12,000 --> 01:48:15,040 ARE ON MEDICARE, HERE IS 3035 01:48:15,040 --> 01:48:16,360 HOSPITALIZATION COST, HERE ARE 3036 01:48:16,360 --> 01:48:17,560 NUMBER OF PEOPLE WITH 3037 01:48:17,560 --> 01:48:18,880 ALZHEIMER'S ON MEDICARE, THEIR 3038 01:48:18,880 --> 01:48:19,080 COST. 3039 01:48:19,080 --> 01:48:22,040 WE NEED THIS INVESTMENT IN YOUR 3040 01:48:22,040 --> 01:48:22,600 COMMUNITY. 3041 01:48:22,600 --> 01:48:23,920 OVERLAY THAT WITH DATA ON, FOR 3042 01:48:23,920 --> 01:48:26,280 EXAMPLE, TO GET A REALLY GOOD 3043 01:48:26,280 --> 01:48:28,080 DIAGNOSTIC FOR ALZHEIMER'S YOU 3044 01:48:28,080 --> 01:48:30,720 NEED A PET SCAN, THERE'S 2500 IN 3045 01:48:30,720 --> 01:48:31,400 THE COUNTRY. 3046 01:48:31,400 --> 01:48:33,800 WE HAVE THEM IN OUR INDEX. 3047 01:48:33,800 --> 01:48:36,120 WE CAN SHOW HERE IS WHAT 3048 01:48:36,120 --> 01:48:38,640 PATIENTS ARE BUT THERE AREN'T 3049 01:48:38,640 --> 01:48:40,720 PET SCANS NEARBY. 3050 01:48:40,720 --> 01:48:41,680 THERE AREN'T ENOUGH NEUROLOGISTS 3051 01:48:41,680 --> 01:48:42,000 NEARBY. 3052 01:48:42,000 --> 01:48:43,800 HERE IS WHERE THE PATIENTS ARE 3053 01:48:43,800 --> 01:48:44,640 BUT THERE AREN'T ALZHEIMER'S 3054 01:48:44,640 --> 01:48:47,600 DISEASE RESEARCH CENTERS. 3055 01:48:47,600 --> 01:48:51,520 WE USE IT TO HAVE PEOPLE DEVELOP 3056 01:48:51,520 --> 01:48:51,880 INFRASTRUCTURE. 3057 01:48:51,880 --> 01:48:55,360 IF A COMPANY, AND SOME USED OUR 3058 01:48:55,360 --> 01:48:56,880 SITE TO SAY WE NEED TO FIGURE 3059 01:48:56,880 --> 01:48:58,880 OUT WHERE WE SHOULD STAND UP THE 3060 01:48:58,880 --> 01:49:00,480 NEXT CLINICAL TRIAL IF 3061 01:49:00,480 --> 01:49:02,160 RECRUITING THESE POPULATIONS ARE 3062 01:49:02,160 --> 01:49:02,680 IMPORTANT. 3063 01:49:02,680 --> 01:49:04,920 AGAIN, WE CAN GO TO THE ZIP 3064 01:49:04,920 --> 01:49:05,960 CODE, STREET, WHERE YOU SHOULD 3065 01:49:05,960 --> 01:49:07,920 GO, TELL YOU WHAT THE HOSPITAL 3066 01:49:07,920 --> 01:49:09,040 SITUATION LOOKS LIKE. 3067 01:49:09,040 --> 01:49:11,680 WE CAN TELL YOU WHERE YOU'VE GOT 3068 01:49:11,680 --> 01:49:14,880 A BIG HOSPITAL, LOTS OF PEOPLE, 3069 01:49:14,880 --> 01:49:18,360 I'M SORRY, LOTS OF GREAT 3070 01:49:18,360 --> 01:49:19,800 INFRASTRUCTURE, SCANS, MRIs, 3071 01:49:19,800 --> 01:49:21,440 TONS OF DOCTORS, A LOT OF MONEY, 3072 01:49:21,440 --> 01:49:23,000 THAT'S NOT WHERE BLACKS AND 3073 01:49:23,000 --> 01:49:24,200 LATINOS GO. 3074 01:49:24,200 --> 01:49:27,880 THEY GO ACROSS STREET WHERE NONE 3075 01:49:27,880 --> 01:49:29,120 OF THAT EXISTS. 3076 01:49:29,120 --> 01:49:31,920 WE'RE THE PARTNER. 3077 01:49:31,920 --> 01:49:33,920 WE'VE BEEN ABLE TO, USING DATA, 3078 01:49:33,920 --> 01:49:34,800 FOR ACTION. 3079 01:49:34,800 --> 01:49:37,400 >>YOU MADE AN IMPORTANT POINT. 3080 01:49:37,400 --> 01:49:39,160 I THOUGHT I MIGHT BUILD ON IT. 3081 01:49:39,160 --> 01:49:41,560 YOU MENTIONED HOW OFTEN YOU HAVE 3082 01:49:41,560 --> 01:49:44,400 NON-PROFITS THAT THEN ARE ABLE 3083 01:49:44,400 --> 01:49:46,120 TO PRESENT TO FALL LEADERSHIP 3084 01:49:46,120 --> 01:49:47,360 AND CONGRESS, FOR EXAMPLE. 3085 01:49:47,360 --> 01:49:50,360 THAT'S A GREAT EXAMPLE OF WHERE 3086 01:49:50,360 --> 01:49:53,280 BIG PHARMA SOMETIMES AND SMALLER 3087 01:49:53,280 --> 01:49:54,920 NON-PROFITS CAN COME TOGETHER. 3088 01:49:54,920 --> 01:50:01,680 WE HAVE THESE PLATFORMS FOR 3089 01:50:01,680 --> 01:50:03,120 LOBBYING AND CONNECTING, TO 3090 01:50:03,120 --> 01:50:08,080 CONNECT TO NON-PROFITS ALLOWS 3091 01:50:08,080 --> 01:50:11,880 VOICES OF INDIVIDUAL PATIENTS TO 3092 01:50:11,880 --> 01:50:15,400 BE AMPLIFIED, SYMBIOSIS BETWEEN 3093 01:50:15,400 --> 01:50:16,600 BIG PHARMA AND THESE GROUPS. 3094 01:50:16,600 --> 01:50:19,200 >>THANK YOU FOR BRINGING THAT 3095 01:50:19,200 --> 01:50:19,560 UP. 3096 01:50:19,560 --> 01:50:23,360 I'M HEARING A LOT OF EXAMPLES OF 3097 01:50:23,360 --> 01:50:25,560 WHAT WE COLLECTIVELY TERM SOCIAL 3098 01:50:25,560 --> 01:50:26,640 DETERMINANTS OF HEALTH, THINKING 3099 01:50:26,640 --> 01:50:29,600 ABOUT WHERE WE WORK, LIVE, PLAY. 3100 01:50:29,600 --> 01:50:32,040 AND HOW THAT IMPACTS OUR HEALTH 3101 01:50:32,040 --> 01:50:36,640 AND OUR ACCESS AND OUR ABILITY 3102 01:50:36,640 --> 01:50:38,680 TO REALLY ADVANCE THE EQUITY 3103 01:50:38,680 --> 01:50:39,480 WITHIN THE COMMUNITIES THAT WE 3104 01:50:39,480 --> 01:50:45,040 LIVE IN. 3105 01:50:45,040 --> 01:50:47,080 STARTING TO THINK ABOUT FOR THE 3106 01:50:47,080 --> 01:50:50,520 NON--- THE FOLKS IN THE AUDIENCE 3107 01:50:50,520 --> 01:50:51,600 HERE, NON-PROFIT ORGANIZATIONS 3108 01:50:51,600 --> 01:50:54,760 THAT WE REALLY WANT TO THINK 3109 01:50:54,760 --> 01:50:55,880 ABOUT WHAT IS VALUABLE 3110 01:50:55,880 --> 01:50:57,640 INFORMATION THAT WE CAN THINK 3111 01:50:57,640 --> 01:50:59,080 ABOUT FROM THE PHARMA 3112 01:50:59,080 --> 01:51:00,720 PERSPECTIVE AND USE THAT 3113 01:51:00,720 --> 01:51:02,800 KNOWLEDGE TO REALLY HELP YOU ALL 3114 01:51:02,800 --> 01:51:05,080 AND COLLABORATE AND FORM 3115 01:51:05,080 --> 01:51:06,760 NETWORKS. 3116 01:51:06,760 --> 01:51:08,240 I KNOW THERE ARE A NUMBER OF 3117 01:51:08,240 --> 01:51:09,080 ORGANIZATIONS WITHIN THE 3118 01:51:09,080 --> 01:51:11,040 AUDIENCE THAT FOCUS, FOR 3119 01:51:11,040 --> 01:51:12,240 EXAMPLE, ON RARE DISEASES, 3120 01:51:12,240 --> 01:51:13,520 THAT'S A PARTICULAR CHALLENGE 3121 01:51:13,520 --> 01:51:16,360 WHEN IT COMES TO INCREASING 3122 01:51:16,360 --> 01:51:18,240 DIVERSITY AND INCLUSION AND 3123 01:51:18,240 --> 01:51:21,200 WHAT'S ALREADY CONSIDERED RARE 3124 01:51:21,200 --> 01:51:22,480 DISEASES, SO I WONDERED IF -- 3125 01:51:22,480 --> 01:51:24,080 THIS IS OPEN TO ANY, IT'S OKAY 3126 01:51:24,080 --> 01:51:26,160 IF YOU DON'T HAVE RESPONSES, BUT 3127 01:51:26,160 --> 01:51:29,200 IF HAVE YOU INSIDER THOUGHTS 3128 01:51:29,200 --> 01:51:30,520 ABOUT HOW WE CAN INCREASE 3129 01:51:30,520 --> 01:51:33,680 DIVERSITY AND INCLUSION IN RARE 3130 01:51:33,680 --> 01:51:35,200 DISEASES AND GET ACCESS TO 3131 01:51:35,200 --> 01:51:36,840 COMMUNITIES WHEN IT REALLY MAY 3132 01:51:36,840 --> 01:51:38,480 BE A VERY SMALL COMMUNITY TO 3133 01:51:38,480 --> 01:51:41,120 START. 3134 01:51:41,120 --> 01:51:44,280 >>I'LL MAKE A GENERAL COMMENT, 3135 01:51:44,280 --> 01:51:46,640 WHICH IS GETTING ACCESS MEANS 3136 01:51:46,640 --> 01:51:48,480 MAKING SURE THAT YOUR MATERIALS 3137 01:51:48,480 --> 01:51:49,600 ARE ACCESSIBLE, RIGHT? 3138 01:51:49,600 --> 01:51:52,200 IT'S NOT JUST A MATTER OF HOW 3139 01:51:52,200 --> 01:51:54,040 MANY LEAFLETS DO WE GET TO THE 3140 01:51:54,040 --> 01:51:54,320 COMMUNITY. 3141 01:51:54,320 --> 01:51:57,240 IT'S DOES THE COMMUNITY READ 3142 01:51:57,240 --> 01:51:58,640 WHAT WE GIVE THEM? 3143 01:51:58,640 --> 01:52:00,760 IS IT WRITTEN AT A LEVEL SO THEY 3144 01:52:00,760 --> 01:52:04,960 CAN UNDERSTAND? 3145 01:52:04,960 --> 01:52:07,560 IS IT CULTURALLY APPROPRIATE? 3146 01:52:07,560 --> 01:52:10,600 SO LOOKING AT THOSE MATERIALS, 3147 01:52:10,600 --> 01:52:13,240 READING FROM BASICALLY A FOURTH 3148 01:52:13,240 --> 01:52:17,840 TO SIXTH GRADE READING LEVEL, 3149 01:52:17,840 --> 01:52:20,040 EVEN COLLEGE GRADUATES ARE 3150 01:52:20,040 --> 01:52:25,040 READING AT SIXTH GRADE READING 3151 01:52:25,040 --> 01:52:26,920 LEVEL, THAT'S THE TRUTH. 3152 01:52:26,920 --> 01:52:29,120 MAKING SURE IT HAS COLOR 3153 01:52:29,120 --> 01:52:31,080 PICTURES, IT'S MORE THAN JUST A 3154 01:52:31,080 --> 01:52:33,160 FRONT AND BACK PAGE, MAKE IT 3155 01:52:33,160 --> 01:52:36,120 SOMETHING THAT LOOKS NICE. 3156 01:52:36,120 --> 01:52:37,640 WE WERE LOOKING AT, FOR EXAMPLE, 3157 01:52:37,640 --> 01:52:40,240 AN ORGANIZATION THAT WAS 3158 01:52:40,240 --> 01:52:42,000 PROVIDING MATERIALS, IT WAS 3159 01:52:42,000 --> 01:52:43,000 INCREDIBLY SCIENTIFIC. 3160 01:52:43,000 --> 01:52:44,560 I'M READING IT, I DON'T KNOW 3161 01:52:44,560 --> 01:52:45,320 WHAT THIS MEANS. 3162 01:52:45,320 --> 01:52:47,840 WHY ARE YOU USING THIS ACRONYM? 3163 01:52:47,840 --> 01:52:49,240 YOU SAY YOU'RE TRYING TO REACH 3164 01:52:49,240 --> 01:52:50,440 THE AFRICAN AMERICAN POPULATION 3165 01:52:50,440 --> 01:52:54,280 BUT YOU'RE USING PEOPLE WHO ARE 3166 01:52:54,280 --> 01:52:55,920 CLEARLY ETHIOPIAN AS PICTURES. 3167 01:52:55,920 --> 01:52:57,800 IT'S JUST BEING SENSITIVE AND 3168 01:52:57,800 --> 01:53:02,160 AWARE OF WHAT THAT IS SO THAT, 3169 01:53:02,160 --> 01:53:04,760 AGAIN, IT WILL BE APPEALABLE TO 3170 01:53:04,760 --> 01:53:06,640 THOSE FOLKS THAT. 3171 01:53:06,640 --> 01:53:07,960 CAN HAPPEN ANYPLACE. 3172 01:53:07,960 --> 01:53:13,400 RARE DISEASES ARE UNIQUE OBVIOUS 3173 01:53:13,400 --> 01:53:17,360 LI BECAUSE YOU HAVE A GROUP OF 3174 01:53:17,360 --> 01:53:18,880 PEOPLE BUT RELY ON NETWORKS TO 3175 01:53:18,880 --> 01:53:20,640 INTRODUCE YOU TO OTHER PEOPLE 3176 01:53:20,640 --> 01:53:23,920 THAT YOU NEED TO CONTACT WITH 3177 01:53:23,920 --> 01:53:25,160 WOULD BE MY SUGGESTION. 3178 01:53:25,160 --> 01:53:28,760 THANK YOU.. 3179 01:53:28,760 --> 01:53:30,720 >>MR. PEARSON? 3180 01:53:30,720 --> 01:53:31,920 >>TWO THINGS. 3181 01:53:31,920 --> 01:53:34,320 THERE CAN BE UNIQUE NEED AND 3182 01:53:34,320 --> 01:53:37,080 FOCUSES BETTER HERE BUT THINK 3183 01:53:37,080 --> 01:53:40,840 ABOUT THE COLLECTIVE NEED, A SET 3184 01:53:40,840 --> 01:53:45,080 OF COMMON ACCESS AND EDUCATION 3185 01:53:45,080 --> 01:53:46,800 AND INFRASTRUCTURE NEEDS THAT 3186 01:53:46,800 --> 01:53:47,480 COLLABORATION, IT'S BEEN 3187 01:53:47,480 --> 01:53:49,440 EXPRESSED COMING TOGETHER WITH 3188 01:53:49,440 --> 01:53:50,800 INDUSTRY AND SOLUTIONIZING 3189 01:53:50,800 --> 01:53:52,520 TOGETHER IS EXTREMELY VALUABLE. 3190 01:53:52,520 --> 01:53:55,240 THERE'S AN ELEMENT OF RESOURCE 3191 01:53:55,240 --> 01:53:57,040 THAT WE HAVE, DEXTERITY WE CAN 3192 01:53:57,040 --> 01:53:57,240 PROVIDE. 3193 01:53:57,240 --> 01:54:00,080 WHAT I'D SAY WHAT ARE THE 3194 01:54:00,080 --> 01:54:02,280 COMMON -- WHEN I THINK ABOUT -- 3195 01:54:02,280 --> 01:54:04,360 YOU TALK ABOUT ALIGNING WITH 3196 01:54:04,360 --> 01:54:07,720 NON-PROFIT INDUSTRY FROM POLICY 3197 01:54:07,720 --> 01:54:09,720 PERSPECTIVE, THE CLINICAL TRIAL 3198 01:54:09,720 --> 01:54:12,200 COMPENSATION IS INCOME FOR FOLKS 3199 01:54:12,200 --> 01:54:13,640 ON PUBLIC PROGRAMS, 3200 01:54:13,640 --> 01:54:14,960 PARTICIPATING IN PUBLIC 3201 01:54:14,960 --> 01:54:16,720 PROGRAMS, I WOULD IMAGINE THAT'S 3202 01:54:16,720 --> 01:54:18,440 A SPACE THAT MOST OF US ARE 3203 01:54:18,440 --> 01:54:19,200 CONCERNED ABOUT. 3204 01:54:19,200 --> 01:54:20,760 TO WE HAVE ABILITY TO COME 3205 01:54:20,760 --> 01:54:21,760 TOGETHER AND SUPPORT? 3206 01:54:21,760 --> 01:54:23,720 THERE'S NO BETTER WAY TO BUILD 3207 01:54:23,720 --> 01:54:25,360 TRUST THAN TO PARTNER WITH AN 3208 01:54:25,360 --> 01:54:26,440 INSTITUTION THAT DOESN'T HAVE 3209 01:54:26,440 --> 01:54:28,200 ANYTHING IN ITS PIPELINE FOR 3210 01:54:28,200 --> 01:54:30,040 WHAT YOU'RE WORKING ON BUT WE'RE 3211 01:54:30,040 --> 01:54:31,800 STILL HERE TO HELP AND RAISE 3212 01:54:31,800 --> 01:54:32,560 THAT STANDARD. 3213 01:54:32,560 --> 01:54:34,760 WHAT ARE THE COMMON COMPONENTS 3214 01:54:34,760 --> 01:54:37,080 ACROSS THAT CAN BE SUPPORTED? 3215 01:54:37,080 --> 01:54:38,800 THE OTHER PIECE IS YOU KNOW MORE 3216 01:54:38,800 --> 01:54:40,000 ABOUT YOUR POPULATION THAN WE 3217 01:54:40,000 --> 01:54:42,120 COULD BEGIN TO. 3218 01:54:42,120 --> 01:54:44,760 SO COMING INTO THE ORGANIZATION, 3219 01:54:44,760 --> 01:54:45,720 SOMETHING ABOUT THAT. 3220 01:54:45,720 --> 01:54:50,920 I HOSTED A GRAND ROUNDS FOR ELI 3221 01:54:50,920 --> 01:54:58,960 LILLY, THE JOURNEY ACROSS THE 3222 01:54:58,960 --> 01:54:59,160 GLOBE. 3223 01:54:59,160 --> 01:55:00,200 HAVING EXTERNAL PERSPECTIVES 3224 01:55:00,200 --> 01:55:02,440 TAKE ACADEMIC AND TECHNICAL MIND 3225 01:55:02,440 --> 01:55:07,400 AND MAKES IT DIFFERENT, BECAUSE 3226 01:55:07,400 --> 01:55:08,840 WE CAN GET EVEN BETTER. 3227 01:55:08,840 --> 01:55:10,600 YOU ALL COMING AND GIVING 3228 01:55:10,600 --> 01:55:11,560 INSIGHT ABOUT WHAT WOULD HELP 3229 01:55:11,560 --> 01:55:14,880 YOU IN TERMS OF UNDERSTANDING 3230 01:55:14,880 --> 01:55:15,560 PATIENT JOURNEY, CAREGIVER 3231 01:55:15,560 --> 01:55:16,280 JOURNEY, THOSE THINGS ARE 3232 01:55:16,280 --> 01:55:17,480 VALUABLE TO US AUGUST. 3233 01:55:17,480 --> 01:55:20,440 SO WE HAVE ABILITY TO PARTNER 3234 01:55:20,440 --> 01:55:22,200 TOGETHER IN THAT SPACE, AGAIN, 3235 01:55:22,200 --> 01:55:24,360 THAT RISES THE TIDE FOR YOU ALL 3236 01:55:24,360 --> 01:55:26,000 BUT CERTAINLY MORE NIMBLE AND 3237 01:55:26,000 --> 01:55:27,240 MORE APPROPRIATE TO MEET PEOPLE 3238 01:55:27,240 --> 01:55:28,560 THAT WE WANT TO MAKE SURE HAVE 3239 01:55:28,560 --> 01:55:33,440 ACCESS. 3240 01:55:33,440 --> 01:55:39,280 >>BRIEFLY, IT'S VERY MUCH NOT A 3241 01:55:39,280 --> 01:55:40,560 BUYER'S MARKET FOR CLINICAL 3242 01:55:40,560 --> 01:55:41,480 TRIALS. 3243 01:55:41,480 --> 01:55:44,480 WHAT I MEAN, TRIALS WE BRING TO 3244 01:55:44,480 --> 01:55:45,400 CLINICAL RESEARCHERS AND 3245 01:55:45,400 --> 01:55:46,280 ULTIMATELY THE PATIENTS 3246 01:55:46,280 --> 01:55:48,120 THEMSELVES HAVE TO RESONATE WITH 3247 01:55:48,120 --> 01:55:49,440 PATIENT GROUPS. 3248 01:55:49,440 --> 01:55:52,000 IF WE'RE NOT CONNECTING IN WITH 3249 01:55:52,000 --> 01:55:53,000 NON-PROFITS, PATIENT ADVOCACY 3250 01:55:53,000 --> 01:55:54,600 GROUPS FROM THE VERY BEGINNING 3251 01:55:54,600 --> 01:55:57,320 TO OUTLINE WHAT TRIALS LOOK 3252 01:55:57,320 --> 01:55:58,680 LIKE, THE LIKELIHOOD OF THE 3253 01:55:58,680 --> 01:56:00,200 PRINCIPAL INVESTIGATOR AND 3254 01:56:00,200 --> 01:56:01,280 ULTIMATELY PATIENTS THEMSELVES 3255 01:56:01,280 --> 01:56:02,800 ACCEPTING THAT TRIAL IS LOW. 3256 01:56:02,800 --> 01:56:05,240 TO PUT A FINER POINT ON THAT, WE 3257 01:56:05,240 --> 01:56:07,320 THINK ABOUT THINGS LIKE 3258 01:56:07,320 --> 01:56:09,320 INCLUSION AND EXCLUSION CRITERIA 3259 01:56:09,320 --> 01:56:11,160 FOR CLINICAL TRIALS, THAT'S NOT 3260 01:56:11,160 --> 01:56:15,760 FOR US NECESSARILY TO HUDDLE IN 3261 01:56:15,760 --> 01:56:22,680 SOUTH SAN FRANCISCO OR BASAL 3262 01:56:22,680 --> 01:56:23,720 SWITZERLAND. 3263 01:56:23,720 --> 01:56:25,160 IT SHOULD BE DONE WITH PATIENT 3264 01:56:25,160 --> 01:56:25,960 ADVOCATE GROUPS. 3265 01:56:25,960 --> 01:56:27,720 FROM THE VERY BEGINNING OF OUR 3266 01:56:27,720 --> 01:56:28,680 CLINICAL TRIAL EFFORTS WE WANT 3267 01:56:28,680 --> 01:56:32,840 TO MIKE SURE WE'RE BRINGING 3268 01:56:32,840 --> 01:56:34,280 ALONG NON-PROFIT ORGANIZATIONS 3269 01:56:34,280 --> 01:56:35,600 TO REFINE STRATEGIES IN CLINICAL 3270 01:56:35,600 --> 01:56:37,800 DEVELOPMENT. 3271 01:56:37,800 --> 01:56:38,240 3272 01:56:38,240 --> 01:56:39,760 >>THANK YOU SO MUCH. 3273 01:56:39,760 --> 01:56:40,320 ALL RIGHT. 3274 01:56:40,320 --> 01:56:43,040 EARLIER WE DID PASS OUT INDEX 3275 01:56:43,040 --> 01:56:43,240 CARDS. 3276 01:56:43,240 --> 01:56:48,200 I DON'T KNOW WHO HAS FILLED THEM 3277 01:56:48,200 --> 01:56:48,760 OUT. 3278 01:56:48,760 --> 01:56:50,240 WE'RE GOING TO COLLECT THOSE AND 3279 01:56:50,240 --> 01:56:54,680 ASK DR. BENSON TO TAKE A LOOK 3280 01:56:54,680 --> 01:56:56,120 AND WHILE HE'S TAKING A LOOK AT 3281 01:56:56,120 --> 01:57:00,160 CARDS WE'LL ASK THE PANELISTS IF 3282 01:57:00,160 --> 01:57:01,640 THERE'S ANYTHING WE DIDN'T COVER 3283 01:57:01,640 --> 01:57:03,240 THAT YOU WANT TO CONVEY TO THE 3284 01:57:03,240 --> 01:57:06,160 AUDIENCE OR MAKE A TWO-MINUTE 3285 01:57:06,160 --> 01:57:07,640 APPEAL ABOUT WHATEVER IS ON YOUR 3286 01:57:07,640 --> 01:57:09,840 MIND WHILE HE GOES THROUGH THAT, 3287 01:57:09,840 --> 01:57:12,920 WE'LL DO FINAL COMMENTS AND GO 3288 01:57:12,920 --> 01:57:14,000 TO THE QUESTIONS. 3289 01:57:14,000 --> 01:57:17,520 >>FOR ME, I'VE HAD A COUPLE 3290 01:57:17,520 --> 01:57:18,720 CONVERSATIONS BUT THE IMPORTANCE 3291 01:57:18,720 --> 01:57:21,560 OF NOT ONLY REPRESENTING THE 3292 01:57:21,560 --> 01:57:23,880 PATIENT VOICE, ALLOWING PATIENTS 3293 01:57:23,880 --> 01:57:25,320 TO REPRESENT THEMSELVES, 3294 01:57:25,320 --> 01:57:26,600 CREATING SPACE AND DEMANDING IN 3295 01:57:26,600 --> 01:57:32,960 THE FORUMS THAT THERE'S 3296 01:57:32,960 --> 01:57:34,600 REPRESENTATION SPECIFICALLY FROM 3297 01:57:34,600 --> 01:57:36,000 GROUPS, MONUMENTALLY HELPFUL. 3298 01:57:36,000 --> 01:57:38,080 IT MEANS A LOT, GOES ON LONG WAY 3299 01:57:38,080 --> 01:57:40,720 TO UNDERSTAND HOW TO MAKE IT 3300 01:57:40,720 --> 01:57:42,920 REAL, IN ADDITION TO ADVOCACY 3301 01:57:42,920 --> 01:57:43,120 WORK. 3302 01:57:43,120 --> 01:57:45,960 I KNOW A LOT OF YOU DO THAT. 3303 01:57:45,960 --> 01:57:47,560 I APPLAUD YOU, BUT TO ENCOURAGE 3304 01:57:47,560 --> 01:57:50,040 THE WORK BECAUSE IT TAKES A LOT 3305 01:57:50,040 --> 01:57:52,320 TO MAKE SURE FOLKS ARE ABLE TO 3306 01:57:52,320 --> 01:57:55,120 ARTICULATE FOR THEMSELVES. 3307 01:57:55,120 --> 01:57:57,000 3308 01:57:57,000 --> 01:57:59,640 I'M GOING TO GIVE YOU A SLOGAN 3309 01:57:59,640 --> 01:58:01,080 THAT EVERYONE CAN USE. 3310 01:58:01,080 --> 01:58:03,800 WE KNOW THAT WE SPEND A LOT OF 3311 01:58:03,800 --> 01:58:05,160 TIME THINKING ABOUT HOW DO WE 3312 01:58:05,160 --> 01:58:07,440 EXPLAIN WHY PATIENTS SHOULD BE 3313 01:58:07,440 --> 01:58:09,840 INVOLVED IN CLINICAL TRIALS AND 3314 01:58:09,840 --> 01:58:11,600 COMMUNITY BENEFIT AND POTENTIAL 3315 01:58:11,600 --> 01:58:13,440 BENEFIT TO THE FAMILY, GOOD OF 3316 01:58:13,440 --> 01:58:17,960 THE ORDER, ALL THIS STUFF, ALL 3317 01:58:17,960 --> 01:58:18,200 TRUE. 3318 01:58:18,200 --> 01:58:21,440 LET'S REMEMBER YOU HEAR SLOGANS 3319 01:58:21,440 --> 01:58:23,440 FIRST PERSON CURED, PUT THE 3320 01:58:23,440 --> 01:58:24,920 DISEASE IN, OF ALZHEIMER'S, WILL 3321 01:58:24,920 --> 01:58:29,760 BE IN A CLINICAL TRIAL. 3322 01:58:29,760 --> 01:58:30,880 MAKE THAT A SLOGAN. 3323 01:58:30,880 --> 01:58:31,480 PEOPLE WOULD RESPOND. 3324 01:58:31,480 --> 01:58:33,600 THEY COULD BE THE FIRST ONE 3325 01:58:33,600 --> 01:58:34,800 THAT'S CLEARED OF DISEASE 3326 01:58:34,800 --> 01:58:35,440 BECAUSE THEY ARE PARTICIPATING 3327 01:58:35,440 --> 01:58:42,120 IN A CLINICAL TRIAL. 3328 01:58:42,120 --> 01:58:43,960 >>BRIEFLY I DON'T KNOW IF THIS 3329 01:58:43,960 --> 01:58:47,160 IS GOING COME AS A SURPRISE BUT 3330 01:58:47,160 --> 01:58:49,560 BIG PHARMA DOESN'T ALWAYS HAVE 3331 01:58:49,560 --> 01:58:50,640 THE BEST REPUTATION. 3332 01:58:50,640 --> 01:58:53,720 I WANT TO STRESS THE NOTION THAT 3333 01:58:53,720 --> 01:58:56,600 GOING FORWARD ONE OF OUR WAYS OF 3334 01:58:56,600 --> 01:59:00,080 BECOMING, IF YOU WILL, BETTER 3335 01:59:00,080 --> 01:59:01,640 STEWARDS AND BETTER PARTICIPANTS 3336 01:59:01,640 --> 01:59:03,560 IN CLINICAL DEVELOPMENT TO MAKE 3337 01:59:03,560 --> 01:59:05,120 SURE VOICES OF PATIENTS ARE 3338 01:59:05,120 --> 01:59:09,400 HEARD FROM THE ENTIRE DRUG 3339 01:59:09,400 --> 01:59:10,360 DEVELOPMENT PURPOSE, TO SAY THE 3340 01:59:10,360 --> 01:59:13,360 DOOR IS OPEN, WE WANT TO HEAR 3341 01:59:13,360 --> 01:59:15,640 FROM YOU, CONNECT, PARTNER AS WE 3342 01:59:15,640 --> 01:59:21,000 CONTINUE TO ADDRESS HEALTH 3343 01:59:21,000 --> 01:59:22,840 DISPARITIES, IT REQUIRES US TO 3344 01:59:22,840 --> 01:59:25,600 BE NIMBLE, OUR FINAL COMMENT, 3345 01:59:25,600 --> 01:59:28,800 THAT THE DOOR IS OPEN FOR 3346 01:59:28,800 --> 01:59:29,080 PARTNERSHIP. 3347 01:59:29,080 --> 01:59:31,800 >>I WANT TO TURN IT OVER TO MY 3348 01:59:31,800 --> 01:59:32,640 DIRECTOR, RICHARD BENSON. 3349 01:59:32,640 --> 01:59:34,040 >>THANK YOU. 3350 01:59:34,040 --> 01:59:37,760 WE HAD SEVERAL QUESTIONS HERE. 3351 01:59:37,760 --> 01:59:40,840 SOME HAVE BEEN ANSWERED THROUGH 3352 01:59:40,840 --> 01:59:42,680 YOUR CONVERSATIONS. 3353 01:59:42,680 --> 01:59:44,160 WE WILL -- AS DR. SANKAR 3354 01:59:44,160 --> 01:59:46,280 MENTIONED EARLIER WE GO GO 3355 01:59:46,280 --> 01:59:47,680 THROUGH THE QUESTIONS, AND THIS 3356 01:59:47,680 --> 01:59:49,680 IS PART OF AN ONGOING DISCUSSION 3357 01:59:49,680 --> 01:59:52,200 SO WE WILL ADDRESS ALL OF THE 3358 01:59:52,200 --> 01:59:55,600 QUESTIONS THAT HAVE COME TO US 3359 01:59:55,600 --> 01:59:57,440 AND INCORPORATE THAT INTO THE 3360 01:59:57,440 --> 01:59:58,440 THINGS WE'RE DOING MOVING 3361 01:59:58,440 --> 01:59:59,240 FORWARD. 3362 01:59:59,240 --> 02:00:00,640 ONE OF THE QUESTIONS, SEVERAL 3363 02:00:00,640 --> 02:00:02,160 QUESTIONS ACTUALLY DEAL WITH 3364 02:00:02,160 --> 02:00:03,240 RARE DISEASES. 3365 02:00:03,240 --> 02:00:05,680 AND COLLECTING DATA AND NOT 3366 02:00:05,680 --> 02:00:06,200 HAVING THE DATA. 3367 02:00:06,200 --> 02:00:09,480 I'D LIKE TO TIE THAT BACK TO 3368 02:00:09,480 --> 02:00:11,480 SORT OF THE EARLIER CONVERSATION 3369 02:00:11,480 --> 02:00:14,360 THAT WE HAD TODAY IN TERMS OF 3370 02:00:14,360 --> 02:00:18,920 THE DATA AND BIG DATA. 3371 02:00:18,920 --> 02:00:22,560 AND DISPARITIES CREATED THROUGH 3372 02:00:22,560 --> 02:00:26,120 MACHINE LEARNING AND A.I. 3373 02:00:26,120 --> 02:00:28,440 WHAT ARE YOUR CONVERSATIONS 3374 02:00:28,440 --> 02:00:38,400 YOU'RE HAVING NOW IN TERMS OF 3375 02:00:38,400 --> 02:00:43,000 DISPARITIES, BIG DATA, MACHINE 3376 02:00:43,000 --> 02:00:48,160 LEARNING, ARTIFICIAL 3377 02:00:48,160 --> 02:00:49,480 INTELLIGENCE? 3378 02:00:49,480 --> 02:00:51,560 >>I'LL START. 3379 02:00:51,560 --> 02:00:52,440 I'M OPTIMISTIC. 3380 02:00:52,440 --> 02:00:54,960 I SAY THAT BECAUSE ONE OF THE 3381 02:00:54,960 --> 02:00:56,920 SAVING GRACES THAT ALLOWS US TO 3382 02:00:56,920 --> 02:00:58,440 HAVE CERTAIN INSIGHT WHERE THE 3383 02:00:58,440 --> 02:01:00,400 PATIENTS ARE, WHAT THE 3384 02:01:00,400 --> 02:01:02,080 CAPABILITIES ARE, WHAT THE 3385 02:01:02,080 --> 02:01:03,200 IMAGING THAT'S AVAILABLE NEAR 3386 02:01:03,200 --> 02:01:05,240 THE PATIENTS AND SO FORTH SO WE 3387 02:01:05,240 --> 02:01:07,440 CAN BETTER REFINE WHERE AND HOW 3388 02:01:07,440 --> 02:01:09,440 WE DO CLINICAL RESEARCH. 3389 02:01:09,440 --> 02:01:12,680 SO FROM OUR PERSPECTIVE, I 3390 02:01:12,680 --> 02:01:13,600 RECOGNIZE ALL THE THREATS SPOKEN 3391 02:01:13,600 --> 02:01:16,080 TO BEFORE I CONTINUE TO FOCUS ON 3392 02:01:16,080 --> 02:01:18,600 THE PROMISE OF WHERE WE CAN USE 3393 02:01:18,600 --> 02:01:20,280 THESE VERY LARGE DATASETS TO 3394 02:01:20,280 --> 02:01:21,480 CONTINUE TO REFINE OUR CLINICAL 3395 02:01:21,480 --> 02:01:24,160 DEVELOPMENT STRATEGIES. 3396 02:01:24,160 --> 02:01:25,800 >>WE SHARE A LOT OF THE SAME 3397 02:01:25,800 --> 02:01:30,200 OPT MILES PER HOUR BUT -- 3398 02:01:30,200 --> 02:01:30,480 OPTIMISM. 3399 02:01:30,480 --> 02:01:31,760 WE HAVE CONVERSATIONS ACROSS 3400 02:01:31,760 --> 02:01:35,800 ORGANIZATIONS TO MAKE SURE WE 3401 02:01:35,800 --> 02:01:37,520 DON'T EXACERBATE THE ISSUES 3402 02:01:37,520 --> 02:01:39,200 BECAUSE WE HAVEN'T BEEN AS 3403 02:01:39,200 --> 02:01:42,800 THOUGHTFUL SO WE HAVE A HEALTHY 3404 02:01:42,800 --> 02:01:45,080 SENSE I WOULDN'T SAY SKEPTICISM 3405 02:01:45,080 --> 02:01:46,400 BUT BEING CAUTIOUS AND 3406 02:01:46,400 --> 02:01:48,560 THOUGHTFUL IN THE WAY WE 3407 02:01:48,560 --> 02:01:51,320 LEVERAGE, PARTICULARLY AROUND 3408 02:01:51,320 --> 02:01:57,880 A.I. 3409 02:01:57,880 --> 02:01:58,680 >>VERY GOOD. 3410 02:01:58,680 --> 02:02:00,640 I'D LIKE TO GIVE A ROUND OF 3411 02:02:00,640 --> 02:02:02,520 APPLAUSE FOR THIS GREAT PANEL 3412 02:02:02,520 --> 02:02:06,600 AND THIS DISCUSSION. 3413 02:02:06,600 --> 02:02:10,480 I WANT TO THANK DR. THEODORE, WE 3414 02:02:10,480 --> 02:02:14,240 HAVE TWO LAWYERS HERE ON THIS 3415 02:02:14,240 --> 02:02:16,200 PANEL, ONE DOCTOR THE MINORITY, 3416 02:02:16,200 --> 02:02:18,600 ATTORNEY PEARSON AND ATTORNEY 3417 02:02:18,600 --> 02:02:20,680 MONROE, ALSO DR. SANKAR FOR THIS 3418 02:02:20,680 --> 02:02:23,080 EXCELLENT DISCUSSION THAT WE HAD 3419 02:02:23,080 --> 02:02:23,640 TODAY. 3420 02:02:23,640 --> 02:02:27,720 SOME OF THE THEMES HAVE COME UP 3421 02:02:27,720 --> 02:02:29,600 AS NAOMI MENTION AT THE 3422 02:02:29,600 --> 02:02:30,440 BEGINNING, TWO-YEAR STRATEGIC 3423 02:02:30,440 --> 02:02:32,840 PLAN PROCESS FOR HEALTH EQUITY 3424 02:02:32,840 --> 02:02:33,800 AND SO COMMUNITY ENGAGEMENT IS 3425 02:02:33,800 --> 02:02:35,480 SORT OF THE BIG PIECE OF THAT 3426 02:02:35,480 --> 02:02:37,120 THAT WE'RE LOOKING AT. 3427 02:02:37,120 --> 02:02:39,400 WE CAN HEAR THAT WITH ALL THE 3428 02:02:39,400 --> 02:02:41,800 PROGRAMS IN TERMS OF VARIOUS 3429 02:02:41,800 --> 02:02:45,080 UNIQUE WAYS, CREATING A PLAY AND 3430 02:02:45,080 --> 02:02:46,760 INVITING PEOPLE TO GIVE OUT 3431 02:02:46,760 --> 02:02:48,160 INFORMATION IN AN ENVIRONMENT 3432 02:02:48,160 --> 02:02:50,040 WHERE THEY FEEL COMFORTABLE 3433 02:02:50,040 --> 02:02:51,520 RECEIVING THAT INFORMATION. 3434 02:02:51,520 --> 02:02:54,280 OR CREATING A VAN TO GO INTO THE 3435 02:02:54,280 --> 02:02:56,160 COMMUNITY AND TO DO SCREENING 3436 02:02:56,160 --> 02:02:57,600 AND PASS OUT INFORMATION. 3437 02:02:57,600 --> 02:03:01,080 AND AS WELL AS THE ENGAGEMENT 3438 02:03:01,080 --> 02:03:02,520 ACTIVITIES THAT DR. THEODORE 3439 02:03:02,520 --> 02:03:03,520 MENTIONED AS WELL. 3440 02:03:03,520 --> 02:03:06,200 SO THIS IS THE KEY PIECE THAT WE 3441 02:03:06,200 --> 02:03:06,440 HEAR. 3442 02:03:06,440 --> 02:03:07,200 THAT'S IMPORTANT. 3443 02:03:07,200 --> 02:03:11,360 WE'RE THINKING OF RARE DISEASES, 3444 02:03:11,360 --> 02:03:13,880 EITHER DISEASES, VERY COMMON 3445 02:03:13,880 --> 02:03:15,320 DISEASE, IMPORTANT TO ENGAGE, 3446 02:03:15,320 --> 02:03:18,280 THAT'S WHAT WE'RE LOOKING TO DO 3447 02:03:18,280 --> 02:03:19,720 MOVING FORWARD AT NINDS. 3448 02:03:19,720 --> 02:03:23,320 AGAIN, IT WAS MENTIONED WE HAVE 3449 02:03:23,320 --> 02:03:24,840 A SERIES OF MANUSCRIPTS 3450 02:03:24,840 --> 02:03:26,400 PUBLISHED IN THE NEXT COUPLE 3451 02:03:26,400 --> 02:03:33,000 WEEKS IN NEUROLOGY. 3452 02:03:33,000 --> 02:03:33,840 WE HAVE THE SOCIAL DETERMINANTS 3453 02:03:33,840 --> 02:03:36,680 OF HEALTH FRAMEWORK, THE GOAL TO 3454 02:03:36,680 --> 02:03:39,200 SHOW THOSE AREAS OF INTERVENTION 3455 02:03:39,200 --> 02:03:41,800 WHERE RESEARCHERS CAN CONSIDER 3456 02:03:41,800 --> 02:03:45,400 WAYS OF ADDRESSING INEQUITY 3457 02:03:45,400 --> 02:03:49,800 PRIOR TO DEVELOPMENT OF DISEASE. 3458 02:03:49,800 --> 02:03:52,960 SO ACTUALLY THAT MANUSCRIPT, ONE 3459 02:03:52,960 --> 02:03:55,600 OF THE REVIEWERS, SEVERAL 3460 02:03:55,600 --> 02:03:58,000 REVIEWERS SAID THIS REQUIRED 3461 02:03:58,000 --> 02:03:59,880 READING FOR ANYONE INTERESTED IN 3462 02:03:59,880 --> 02:04:00,560 DOING BIOMEDICAL RESEARCH. 3463 02:04:00,560 --> 02:04:02,600 WE WANT THIS TO BE A GUIDE FOR 3464 02:04:02,600 --> 02:04:03,680 PEOPLE CONSIDERING DOING 3465 02:04:03,680 --> 02:04:06,160 RESEARCH IN THIS AREA AND TO 3466 02:04:06,160 --> 02:04:07,400 START THINKING ABOUT SOCIAL 3467 02:04:07,400 --> 02:04:08,640 DETERMINANTS OF HEALTH. 3468 02:04:08,640 --> 02:04:10,560 WE'RE EXCITED ABOUT THIS. 3469 02:04:10,560 --> 02:04:13,000 AGAIN, THIS IS THE FIRST PART OF 3470 02:04:13,000 --> 02:04:14,400 OUR DISCUSSION. 3471 02:04:14,400 --> 02:04:16,600 I'M GOING TO NOW TURN IT OVER TO 3472 02:04:16,600 --> 02:04:18,560 MY INSTITUTE DIRECTOR WHO HAS 3473 02:04:18,560 --> 02:04:21,200 BEEN SUPPORTIVE OF THE WORK 3474 02:04:21,200 --> 02:04:21,760 WE'RE DOING. 3475 02:04:21,760 --> 02:04:24,000 WE'VE DONE A LOT OF NOVEL THINGS 3476 02:04:24,000 --> 02:04:25,720 IN THIS SPACE. 3477 02:04:25,720 --> 02:04:28,640 THANK YOU. 3478 02:04:28,640 --> 02:04:34,000 3479 02:04:34,000 --> 02:04:35,520 3480 02:04:35,520 --> 02:04:38,280 DR. KOROSHETZ HAS BEEN 3481 02:04:38,280 --> 02:04:39,280 SUPPORTIVE OF THE WORK. 3482 02:04:39,280 --> 02:04:41,120 HE AND I HAD AN OPPORTUNITY TO 3483 02:04:41,120 --> 02:04:44,840 PUBLISH AN ARTICLE TOGETHER IN 3484 02:04:44,840 --> 02:04:47,240 STROKE, IN TERMS OF HEALTH 3485 02:04:47,240 --> 02:04:48,680 EQUITY RESEARCH THAT MATTERS. 3486 02:04:48,680 --> 02:04:51,400 SO WE FOCUS ON DOING THE TYPE OF 3487 02:04:51,400 --> 02:04:53,920 WORK THAT WILL ACTUALLY BE 3488 02:04:53,920 --> 02:04:56,400 TRANSFORMATIVE HOW WORK IS DONE. 3489 02:04:56,400 --> 02:04:57,880 THAT'S WHAT WE'RE MOVING FORWARD 3490 02:04:57,880 --> 02:04:59,640 WITH DOING AT NINDS. 3491 02:04:59,640 --> 02:05:03,800 DR. KOROSHETZ? 3492 02:05:03,800 --> 02:05:05,280 3493 02:05:05,280 --> 02:05:05,520 3494 02:05:05,520 --> 02:05:07,160 >>OKAY. 3495 02:05:07,160 --> 02:05:11,760 WELL, I HAVE THE PLEASURE OF 3496 02:05:11,760 --> 02:05:17,000 WRAPPING UP THE NON-PROFIT 3497 02:05:17,000 --> 02:05:18,320 FORUM, WHICH I MUST SAY, I'LL 3498 02:05:18,320 --> 02:05:21,400 SAY WHAT I SAY EVERY YEAR, WOW, 3499 02:05:21,400 --> 02:05:26,320 THIS IS BETTER THAN LAST YEAR. 3500 02:05:26,320 --> 02:05:28,200 3501 02:05:28,200 --> 02:05:29,440 THAT'S BECAUSE OF ALL THE PEOPLE 3502 02:05:29,440 --> 02:05:32,120 THAT DID A LOT OF HARD WORK 3503 02:05:32,120 --> 02:05:35,640 TRYING TO THINK HARD ABOUT HOW 3504 02:05:35,640 --> 02:05:37,680 TO MAKE THIS VALUABLE, TO THE 3505 02:05:37,680 --> 02:05:40,760 FOLKS WHO COME EACH YEAR TO THE 3506 02:05:40,760 --> 02:05:41,960 NINDS FOLKS, AND PEOPLE FROM 3507 02:05:41,960 --> 02:05:44,000 OTHER PARTS OF THE GOVERNMENT 3508 02:05:44,000 --> 02:05:45,480 AND INDUSTRY. 3509 02:05:45,480 --> 02:05:47,720 AND SO IT'S ALL PUT TOGETHER BY 3510 02:05:47,720 --> 02:05:51,520 A STEERING COMMITTEE OF PEOPLE 3511 02:05:51,520 --> 02:05:53,000 FROM NON-PROFITS WORKING WITH 3512 02:05:53,000 --> 02:05:55,760 NIH FOLKS, AND THEY SPEND ABOUT 3513 02:05:55,760 --> 02:05:57,400 A YEAR TRYING TO THROW THINGS 3514 02:05:57,400 --> 02:06:00,240 OUT AGAINST THE WALL, SEE WHAT 3515 02:06:00,240 --> 02:06:02,760 STICKS, AND EVERY YEAR THEY DO A 3516 02:06:02,760 --> 02:06:04,040 GREAT JOB AND THEY ALWAYS TRY 3517 02:06:04,040 --> 02:06:06,840 AND DO BETTER THAN THE YEAR 3518 02:06:06,840 --> 02:06:08,880 BEFORE AND ALWAYS SUCCEED. 3519 02:06:08,880 --> 02:06:11,080 NEXT YEAR I'M SURE THEY WILL AS 3520 02:06:11,080 --> 02:06:11,280 WELL. 3521 02:06:11,280 --> 02:06:16,080 BUT IT IS A LOT OF WORK. 3522 02:06:16,080 --> 02:06:18,080 AND WE SAW THE FRUITS OF THEIR 3523 02:06:18,080 --> 02:06:23,480 LABOR OVER THE LAST TWO DAYS. 3524 02:06:23,480 --> 02:06:27,600 A COUPLE REFLECTIONS ON MY END 3525 02:06:27,600 --> 02:06:29,480 THAT, YOU KNOW, WE ARE ALL 3526 02:06:29,480 --> 02:06:32,600 INVOLVED IN THE SAME ECOSYSTEM 3527 02:06:32,600 --> 02:06:35,720 IN A DIFFERENT WAY. 3528 02:06:35,720 --> 02:06:37,920 AND THE GOAL THAT BINDS US 3529 02:06:37,920 --> 02:06:39,240 TOGETHER IS TO FIND BETTER 3530 02:06:39,240 --> 02:06:41,520 TREATMENTS FOR PEOPLE WITH 3531 02:06:41,520 --> 02:06:43,040 NEUROLOGIC DISEASES THAT REALLY 3532 02:06:43,040 --> 02:06:46,120 TRAGIC, AS YOU HEARD YESTERDAY, 3533 02:06:46,120 --> 02:06:48,880 AND AS WE ALL KNOW, FROM GROUPS 3534 02:06:48,880 --> 02:06:57,520 YOU TAKE CARE OF AND REPRESENT, 3535 02:06:57,520 --> 02:07:01,680 AND THIS ECOSYSTEM AT THIS 3536 02:07:01,680 --> 02:07:03,360 MEETING HAS SHIFTED TOWARDS 3537 02:07:03,360 --> 02:07:04,560 PATIENT ADVOCACY GROUPS AND HOW 3538 02:07:04,560 --> 02:07:05,640 THEY CAN WORK WITH 3539 02:07:05,640 --> 02:07:07,960 INVESTIGATORS, HOW THEY CAN WORK 3540 02:07:07,960 --> 02:07:08,840 WITH NINDS. 3541 02:07:08,840 --> 02:07:10,600 WE HAVE MANY OTHER MEETINGS 3542 02:07:10,600 --> 02:07:12,320 THROUGHOUT THE YEAR WHERE WE 3543 02:07:12,320 --> 02:07:15,280 MIGHT WORK WITH SCIENTISTS MORE, 3544 02:07:15,280 --> 02:07:18,440 BUT AS AMY SAID WE'RE REALLY 3545 02:07:18,440 --> 02:07:20,560 INTERESTED IN NOT DOING THESE 3546 02:07:20,560 --> 02:07:22,760 THINGS SEPARATELY BUT WEAVING 3547 02:07:22,760 --> 02:07:27,800 THE ECOSYSTEM TOGETHER AS WE DO 3548 02:07:27,800 --> 02:07:28,240 THIS. 3549 02:07:28,240 --> 02:07:29,960 WE ALL ARE BASICALLY -- THE 3550 02:07:29,960 --> 02:07:32,280 NON-PROFITS AND WE ARE BASICALLY 3551 02:07:32,280 --> 02:07:33,480 INTERACTING WITH THE SCIENTISTS 3552 02:07:33,480 --> 02:07:40,280 AND PATIENTS, AND THE 3553 02:07:40,280 --> 02:07:40,600 CAREGIVERS. 3554 02:07:40,600 --> 02:07:44,080 AND WE ARE ALL PUSHING TO GET 3555 02:07:44,080 --> 02:07:45,200 MORE WORK DONE. 3556 02:07:45,200 --> 02:07:49,040 I DID WANT TO SAY ONE THING THAT 3557 02:07:49,040 --> 02:07:52,240 I THINK IS SOMETHING THAT WE 3558 02:07:52,240 --> 02:07:54,840 HAVEN'T MENTIONED BEFORE. 3559 02:07:54,840 --> 02:07:56,680 WE KEEP TALKING ABOUT, YOU KNOW, 3560 02:07:56,680 --> 02:07:59,440 THE INVESTIGATORS AS BEING THE 3561 02:07:59,440 --> 02:08:01,360 P.I.s OF THESE PROJECTS, OUR 3562 02:08:01,360 --> 02:08:03,400 MONEY GOES OUT TO THE PRINCIPAL 3563 02:08:03,400 --> 02:08:04,320 INVESTIGATORS OF THESE PROJECTS. 3564 02:08:04,320 --> 02:08:07,120 BUT THE PEOPLE WHO REALLY DO THE 3565 02:08:07,120 --> 02:08:09,200 WORK ON THE PROJECTS WE TEND TO 3566 02:08:09,200 --> 02:08:09,560 IGNORE. 3567 02:08:09,560 --> 02:08:13,400 MAYBE THAT'S SOMETHING THAT WE 3568 02:08:13,400 --> 02:08:14,680 COULD THINK ABOUT HOW TO 3569 02:08:14,680 --> 02:08:14,920 ADDRESS. 3570 02:08:14,920 --> 02:08:18,720 I CAN TELL YOU NOW THAT MANY OF 3571 02:08:18,720 --> 02:08:20,600 THE PROJECTS THAT WE'RE FUNDING, 3572 02:08:20,600 --> 02:08:23,640 THE REASON WHY THINGS ARE NOT 3573 02:08:23,640 --> 02:08:34,200 GOING WELL IS BECAUSE THEY DON'T 3574 02:08:34,960 --> 02:08:39,520 HAVE CLINICAL COORDINATORS OFTEN 3575 02:08:39,520 --> 02:08:40,600 POSTBACS OR NURSES, DON'T GET IN 3576 02:08:40,600 --> 02:08:42,360 THE FIELD, CAN'T STAY IN THE 3577 02:08:42,360 --> 02:08:43,480 FIELD, MAYBE NOT PAID WELL 3578 02:08:43,480 --> 02:08:45,640 ENOUGH OR APPRECIATED ENOUGH. 3579 02:08:45,640 --> 02:08:52,120 BUT I WOULD SAY THOSE ARE THE 3580 02:08:52,120 --> 02:08:52,960 PEOPLE WHO REALLY THE DRIVERS OF 3581 02:08:52,960 --> 02:08:54,640 WHAT HAPPENS ON THE GROUND. 3582 02:08:54,640 --> 02:08:56,080 MAYBE WE CAN PAY SOME ATTENTION 3583 02:08:56,080 --> 02:08:57,000 TO THAT COMING UP BECAUSE IT IS 3584 02:08:57,000 --> 02:08:58,480 ONE OF THE ISSUES. 3585 02:08:58,480 --> 02:09:02,000 THE OTHER ISSUE THAT PEOPLE MAY 3586 02:09:02,000 --> 02:09:03,440 NOT KNOW ABOUT IS THAT, AGAIN, 3587 02:09:03,440 --> 02:09:07,480 IN THE LABORATORIES THE WORK IS 3588 02:09:07,480 --> 02:09:09,440 DONE PRIMARILY BY IN OUR 3589 02:09:09,440 --> 02:09:10,640 AMERICAN SYSTEM BY POSTDOCS, 3590 02:09:10,640 --> 02:09:13,320 PEOPLE WHO COME IN, FINISH THEIR 3591 02:09:13,320 --> 02:09:17,160 TRAINING, IN TERMS OF GETTING A 3592 02:09:17,160 --> 02:09:18,120 Ph.D., NOW GETTING 3593 02:09:18,120 --> 02:09:19,800 PROFESSIONALIZED EXPERIENCE, 3594 02:09:19,800 --> 02:09:22,800 HOPEFULLY GOING TO COMPETE FOR 3595 02:09:22,800 --> 02:09:24,240 THEIR OWN LABORATORY OR 3596 02:09:24,240 --> 02:09:25,440 POTENTIALLY MOVING TO A 3597 02:09:25,440 --> 02:09:27,760 DIFFERENT AREA OF SCIENCE 3598 02:09:27,760 --> 02:09:28,040 MANAGEMENT. 3599 02:09:28,040 --> 02:09:32,600 BUT THERE'S A BIG SHORTAGE IN 3600 02:09:32,600 --> 02:09:33,880 THAT SPACE NOW TOO. 3601 02:09:33,880 --> 02:09:35,520 THE NIH HAS AN ADVISORY 3602 02:09:35,520 --> 02:09:38,800 COMMITTEE TO THE DIRECTOR THAT'S 3603 02:09:38,800 --> 02:09:41,000 LOOKING INTO THE ISSUE OF 3604 02:09:41,000 --> 02:09:44,920 POSTDOC POSITIONS IN THE U.S., 3605 02:09:44,920 --> 02:09:46,240 BUT, AGAIN, THAT'S ANOTHER WEAK 3606 02:09:46,240 --> 02:09:49,960 LINK IN THE CHAIN THAT WE 3607 02:09:49,960 --> 02:09:54,400 SOMETIMES DON'T THINK TOO WELL 3608 02:09:54,400 --> 02:09:54,720 ABOUT. 3609 02:09:54,720 --> 02:09:58,840 NON-PROFITS THOUGH I THINK CAN 3610 02:09:58,840 --> 02:10:01,200 HELP IN THAT SPACE, THE DISEASE 3611 02:10:01,200 --> 02:10:03,240 YOU FOCUS ON, POTENTIALLY GIVING 3612 02:10:03,240 --> 02:10:05,880 THEM SOME FUNDING TO GET THEIR 3613 02:10:05,880 --> 02:10:07,000 PROGRAMS STARTED AS THEY CAN 3614 02:10:07,000 --> 02:10:09,560 THEN TAKE OUT AND COMPETE FOR 3615 02:10:09,560 --> 02:10:10,720 NIH FUNDING. 3616 02:10:10,720 --> 02:10:12,720 I SAY EVERY YEAR THAT I WOULD 3617 02:10:12,720 --> 02:10:18,640 URGE THE GROUPS TO THINK ABOUT 3618 02:10:18,640 --> 02:10:20,600 HOW YOUR FUNDING CAN BE USED TO 3619 02:10:20,600 --> 02:10:21,800 LEVERAGE OUR FUNDING. 3620 02:10:21,800 --> 02:10:24,200 SO AS I MENTIONED, IN MY TALK 3621 02:10:24,200 --> 02:10:26,600 YESTERDAY, OUR SYSTEM OF GIVING 3622 02:10:26,600 --> 02:10:29,600 OUT FUNDS IS A COMPETITIVE ONE, 3623 02:10:29,600 --> 02:10:33,320 PEOPLE COME IN, GET THE SCORE, 3624 02:10:33,320 --> 02:10:35,400 BEST SCORES GET FUNDED. 3625 02:10:35,400 --> 02:10:37,400 ONE OF THE THINGS TO DETERMINE 3626 02:10:37,400 --> 02:10:39,080 THE BEST SCORE HOW MANY 3627 02:10:39,080 --> 02:10:40,280 PRELIMINARY DATA, THERE WE DON'T 3628 02:10:40,280 --> 02:10:41,920 HAVE A GOOD SYSTEM FOR GIVING 3629 02:10:41,920 --> 02:10:44,560 PEOPLE MONEY TO GET PRELIMINARY 3630 02:10:44,560 --> 02:10:44,760 DATA. 3631 02:10:44,760 --> 02:10:47,200 MOST OF THAT COMES FROM THE 3632 02:10:47,200 --> 02:10:49,360 NON-PROFITS, IN MY EXPERIENCE. 3633 02:10:49,360 --> 02:10:52,880 SO THAT'S ANOTHER REALLY AMAZING 3634 02:10:52,880 --> 02:10:53,080 TOOL. 3635 02:10:53,080 --> 02:10:55,600 YOU SHOULD KEEP TRACK OF THAT, 3636 02:10:55,600 --> 02:10:57,720 PEOPLE YOU FUND, HOW SUCCESSFUL 3637 02:10:57,720 --> 02:10:59,360 ARE THEY, TO LEVERAGE NIH GRANT. 3638 02:10:59,360 --> 02:11:01,520 WHICH THE AVERAGE COST RIGHT 3639 02:11:01,520 --> 02:11:05,480 NOW, TOTAL COST IS ABOUT 3640 02:11:05,480 --> 02:11:09,000 $550,000 A YEAR. 3641 02:11:09,000 --> 02:11:11,160 SO REALLY QUITE EXPENSIVE GRANTS 3642 02:11:11,160 --> 02:11:13,880 THAT PEOPLE CAN GET FROM THE 3643 02:11:13,880 --> 02:11:14,440 NIH. 3644 02:11:14,440 --> 02:11:19,280 AND THEN WE HEARD YESTERDAY 3645 02:11:19,280 --> 02:11:23,880 ABOUT, YOU KNOW, THIS NEW REALLY 3646 02:11:23,880 --> 02:11:26,400 NEW WORLD OF TREATMENT, GENOMIC 3647 02:11:26,400 --> 02:11:26,720 THERAPY. 3648 02:11:26,720 --> 02:11:30,880 AND THAT, YOU KNOW, IN CONCERT 3649 02:11:30,880 --> 02:11:34,120 WITH THE MOVE IN NEUROLOGY, 3650 02:11:34,120 --> 02:11:35,720 NEUROSURGERY TOWARDS MORE OF A 3651 02:11:35,720 --> 02:11:37,600 TREATMENT, YOU KNOW, USED TO BE 3652 02:11:37,600 --> 02:11:40,520 WHEN -- I REMEMBER WHEN I WAS 3653 02:11:40,520 --> 02:11:42,640 LOOKING AT NEUROLOGY I DECIDED 3654 02:11:42,640 --> 02:11:45,960 I'M NOT GOING TO DO NEUROLOGY, 3655 02:11:45,960 --> 02:11:49,080 NO TREATMENTSES, I WANT TO TREAT 3656 02:11:49,080 --> 02:11:50,120 PEOPLE, CHANGED MY MIND. 3657 02:11:50,120 --> 02:11:52,560 I WAS GLAD I DID BECAUSE 3658 02:11:52,560 --> 02:11:54,760 TREATMENTS STARTED COMING IN MY 3659 02:11:54,760 --> 02:11:56,000 CAREER, IT'S BEEN EXCITING. 3660 02:11:56,000 --> 02:11:59,000 WE'RE GETTING MORE AND MORE INTO 3661 02:11:59,000 --> 02:11:59,920 THAT SPACE. 3662 02:11:59,920 --> 02:12:02,400 BUT TREATMENTS ARE NOT WITHOUT 3663 02:12:02,400 --> 02:12:06,120 RISK, AND RESEARCH RELIES ON 3664 02:12:06,120 --> 02:12:08,400 PEOPLE WHO ENTER RESEARCH 3665 02:12:08,400 --> 02:12:10,560 PROGRAMS AND PUT THEMSELVES ON 3666 02:12:10,560 --> 02:12:11,160 THE LINE. 3667 02:12:11,160 --> 02:12:13,560 I THINK MARIA SAID IT BEST 3668 02:12:13,560 --> 02:12:15,000 YESTERDAY THAT YOU DON'T ENTER 3669 02:12:15,000 --> 02:12:16,960 RESEARCH BECAUSE IT'S GOING TO 3670 02:12:16,960 --> 02:12:17,920 HELP YOU. 3671 02:12:17,920 --> 02:12:19,880 YOU THINK IT'S GOING TO HELP 3672 02:12:19,880 --> 02:12:21,520 SOMEBODY ELSE, EITHER IN YOUR 3673 02:12:21,520 --> 02:12:24,600 LIFETIME OR MAYBE NOT IN YOUR 3674 02:12:24,600 --> 02:12:26,320 LIFETIME. 3675 02:12:26,320 --> 02:12:28,960 SO IT'S REALLY ALTRUISM THAT WE 3676 02:12:28,960 --> 02:12:32,520 RELY ON FOR OUR RESEARCH 3677 02:12:32,520 --> 02:12:34,560 INFRASTRUCTURE FOR PEOPLE TO 3678 02:12:34,560 --> 02:12:36,960 PARTICIPATE, SUBJECTS TO 3679 02:12:36,960 --> 02:12:37,720 PARTICIPATE. 3680 02:12:37,720 --> 02:12:39,520 AND WHY THEY DO THAT, YOU KNOW, 3681 02:12:39,520 --> 02:12:41,480 BECAUSE THEY ARE REALLY 3682 02:12:41,480 --> 02:12:43,440 INVESTED, THEY REALLY FEEL LIKE 3683 02:12:43,440 --> 02:12:44,440 THEY CAN CONTRIBUTE AND 3684 02:12:44,440 --> 02:12:49,360 CERTAINLY CAN. 3685 02:12:49,360 --> 02:12:49,960 3686 02:12:49,960 --> 02:12:51,800 THEY ARE ONLY GOING TO 3687 02:12:51,800 --> 02:12:53,760 CONTRIBUTE IF THEY TRUST THE 3688 02:12:53,760 --> 02:12:54,000 SYSTEM. 3689 02:12:54,000 --> 02:12:55,280 HOW DO YOU BUILD TRUST? 3690 02:12:55,280 --> 02:12:56,480 THE GOVERNMENT IS NOT GOING TO 3691 02:12:56,480 --> 02:12:59,560 BE THE ANSWER TO BUILDING TRUST. 3692 02:12:59,560 --> 02:13:01,120 SO, WHO IS GOING TO DO IT? 3693 02:13:01,120 --> 02:13:02,400 I DON'T THINK THE COMPANIES ARE 3694 02:13:02,400 --> 02:13:03,280 GOING TO DO IT. 3695 02:13:03,280 --> 02:13:05,360 I THINK THEY CAN HELP BUT THEY 3696 02:13:05,360 --> 02:13:06,360 HAVE THEIR AGENDAS. 3697 02:13:06,360 --> 02:13:09,400 EVERYBODY KNOWS WHAT THEY ARE. 3698 02:13:09,400 --> 02:13:11,280 BUT THE NON-PROFITS, THAT'S 3699 02:13:11,280 --> 02:13:13,240 WHERE THE TRUST IS. 3700 02:13:13,240 --> 02:13:15,240 THAT TRUST CAN SPREAD OUT TO THE 3701 02:13:15,240 --> 02:13:16,600 GOVERNMENT, TO THE INDUSTRY, BUT 3702 02:13:16,600 --> 02:13:17,760 WITHOUT THE NON-PROFITS I THINK 3703 02:13:17,760 --> 02:13:22,760 WE'RE ALL IN BIG TROUBLE. 3704 02:13:22,760 --> 02:13:24,360 BUILDING TRUST IN THE ECOSYSTEM 3705 02:13:24,360 --> 02:13:26,080 FOR RESEARCH IS NOT GOING TO 3706 02:13:26,080 --> 02:13:27,080 HAPPEN WITHOUT YOU. 3707 02:13:27,080 --> 02:13:30,320 SO I MUST SAY WE OWE YOU A REAL 3708 02:13:30,320 --> 02:13:33,640 DEBT OF GRATITUDE FOR WHAT YOU 3709 02:13:33,640 --> 02:13:35,920 DO. 3710 02:13:35,920 --> 02:13:39,320 WE ALSO HEARD ABOUT THE SUCCESS 3711 02:13:39,320 --> 02:13:41,800 STORIES AND AS I SAID TO HAVE 3712 02:13:41,800 --> 02:13:45,120 THREE DRUGS APPROVED FOR OUR 3713 02:13:45,120 --> 02:13:47,520 INDICATIONS, THESE ARE REALLY 3714 02:13:47,520 --> 02:13:52,120 SERIOUS DISEASES. 3715 02:13:52,120 --> 02:13:53,640 THEY ARE REALLY BREAKTHROUGHS IN 3716 02:13:53,640 --> 02:13:54,640 THESE SPACES. 3717 02:13:54,640 --> 02:13:59,240 WHAT WE'LL SEE IN ALZHEIMER'S IS 3718 02:13:59,240 --> 02:14:01,440 JUST ASTRONOMICAL CHANGE IN HOW 3719 02:14:01,440 --> 02:14:05,560 HEALTH CARE SYSTEMS WILL HAVE TO 3720 02:14:05,560 --> 02:14:06,680 ADAPT TO THAT. 3721 02:14:06,680 --> 02:14:08,720 AND I THINK WE'RE LOOKING 3722 02:14:08,720 --> 02:14:10,600 FORWARD TO MORE OF THESE. 3723 02:14:10,600 --> 02:14:11,720 THESE ARE THE BEST. 3724 02:14:11,720 --> 02:14:13,360 THAT'S WHAT EVERYBODY IS 3725 02:14:13,360 --> 02:14:14,120 STRIVING FOR. 3726 02:14:14,120 --> 02:14:16,080 AS YOU CAN SEE IT TAKES A LONG 3727 02:14:16,080 --> 02:14:18,040 TIME TO GET THERE. 3728 02:14:18,040 --> 02:14:21,000 THEY JUST HAVE TO GET INTO THE 3729 02:14:21,000 --> 02:14:21,560 LONG RUN. 3730 02:14:21,560 --> 02:14:24,040 BUT I THINK THAT FUTURE DOES 3731 02:14:24,040 --> 02:14:25,240 LOOK BRIGHT IF WE CAN WORK 3732 02:14:25,240 --> 02:14:27,120 TOGETHER AND STICK TOGETHER FOR 3733 02:14:27,120 --> 02:14:29,760 THE LONG RUN HERE. 3734 02:14:29,760 --> 02:14:33,520 LAST, WE HEARD ABOUT DATA 3735 02:14:33,520 --> 02:14:33,760 SHARING. 3736 02:14:33,760 --> 02:14:36,680 AND I THINK IT WAS A REALLY GOOD 3737 02:14:36,680 --> 02:14:37,440 CONVERSATION. 3738 02:14:37,440 --> 02:14:40,200 WE HAD ANOTHER SIMILAR 3739 02:14:40,200 --> 02:14:41,720 CONVERSATION WITH THE BRAIN 3740 02:14:41,720 --> 02:14:44,360 NEUROETHICS WORKING GROUP LAST 3741 02:14:44,360 --> 02:14:49,160 WEEK, AND I THINK THAT AS RON 3742 02:14:49,160 --> 02:14:51,800 SAID, THE PATIENT DATA IS 3743 02:14:51,800 --> 02:14:52,800 REALLY, REALLY IMPORTANT. 3744 02:14:52,800 --> 02:14:56,280 YOU HAVE TO BE REALLY CAREFUL 3745 02:14:56,280 --> 02:14:57,200 THAT YOU'RE COLLECTING DATA 3746 02:14:57,200 --> 02:14:59,920 THAT'S GOING TO BE USEFUL. 3747 02:14:59,920 --> 02:15:02,320 SO THERE IS, AND I CAN SEE IT 3748 02:15:02,320 --> 02:15:03,760 FROM WHERE I STAND, WITH 3749 02:15:03,760 --> 02:15:05,440 GENERAL, YOU KNOW, THING ABOUT 3750 02:15:05,440 --> 02:15:06,960 LET'S COLLECT A LOT OF DATA AND 3751 02:15:06,960 --> 02:15:09,520 THEN FIGURE OUT WHAT IT'S GOOD 3752 02:15:09,520 --> 02:15:11,280 FOR LATER. 3753 02:15:11,280 --> 02:15:13,360 THAT USUALLY DOESN'T WORK. 3754 02:15:13,360 --> 02:15:14,920 USUALLY WHEN YOU TRY TO FIND OUT 3755 02:15:14,920 --> 02:15:17,720 WHAT YOU'RE GOING TO USE IT FOR 3756 02:15:17,720 --> 02:15:18,720 YOU REALIZE, GEE, WE DIDN'T 3757 02:15:18,720 --> 02:15:19,680 COLLECT THIS. 3758 02:15:19,680 --> 02:15:20,560 WITHOUT COLLECTING THAT, NONE OF 3759 02:15:20,560 --> 02:15:22,240 THE OTHER STUFF IS VERY GOOD. 3760 02:15:22,240 --> 02:15:24,960 YOU HAVE TO BE CAREFUL ABOUT HOW 3761 02:15:24,960 --> 02:15:26,600 YOU DESIGN WHAT KIND OF DATA 3762 02:15:26,600 --> 02:15:27,720 YOU'RE GOING TO TAKE IN. 3763 02:15:27,720 --> 02:15:31,200 IF YOU DO IT RIGHT, IT'S 3764 02:15:31,200 --> 02:15:32,520 INCREDIBLY VALUABLE. 3765 02:15:32,520 --> 02:15:36,240 AT THE NINDS, RON TALKED ABOUT 3766 02:15:36,240 --> 02:15:38,440 NATURAL HISTORY DATA, 400 3767 02:15:38,440 --> 02:15:39,200 DISEASES, WE COULD POTENTIALLY 3768 02:15:39,200 --> 02:15:42,160 USE ALL THE MONEY TO FUND JUST 3769 02:15:42,160 --> 02:15:43,920 NATURAL HISTORY DATA. 3770 02:15:43,920 --> 02:15:46,680 WE PURPOSELY DON'T DO THAT. 3771 02:15:46,680 --> 02:15:49,600 WE TEND TO FOCUS ON WHAT WE CALL 3772 02:15:49,600 --> 02:15:50,600 CLINICAL TRIAL READINESS. 3773 02:15:50,600 --> 02:15:53,360 SO YOU HAVE A DISEASE, WHERE 3774 02:15:53,360 --> 02:15:56,000 THINGS LOOK LIKE THEY ARE GOING 3775 02:15:56,000 --> 02:15:58,160 TO BREAK, YOU NEED TO DO A STUDY 3776 02:15:58,160 --> 02:16:00,160 THAT'S GOING TO GET YOU THE 3777 02:16:00,160 --> 02:16:01,440 OUTCOME MEASURES YOU NEED FOR 3778 02:16:01,440 --> 02:16:03,120 YOUR TRIAL OR BIOMEDICAL YOU 3779 02:16:03,120 --> 02:16:05,520 NEED FOR YOUR TRIAL. 3780 02:16:05,520 --> 02:16:07,400 IT'S MUCH MORE FOCUSED TOWARDS 3781 02:16:07,400 --> 02:16:08,240 THAT ASPECT. 3782 02:16:08,240 --> 02:16:14,360 THEN WE HAVE PROGRAMS FOR THAT. 3783 02:16:14,360 --> 02:16:16,760 BUT NON-PROFITS DO A LOT OF 3784 02:16:16,760 --> 02:16:18,960 BACKGROUND COLLECTION OF NATURAL 3785 02:16:18,960 --> 02:16:22,120 HISTORY BECAUSE IT'S JUST TOO 3786 02:16:22,120 --> 02:16:23,320 OVERWHELMING GIVEN THE NUMBER OF 3787 02:16:23,320 --> 02:16:25,960 DISORDERS WE HAVE. 3788 02:16:25,960 --> 02:16:27,720 THE OTHER THING WHICH WAS 3789 02:16:27,720 --> 02:16:30,880 TOUCHED UPON IN TODAY'S SESSION 3790 02:16:30,880 --> 02:16:35,800 BUT WAS MORE DISCUSSED AT THE 3791 02:16:35,800 --> 02:16:38,640 BRAIN DATA, THAT WITH THE 3792 02:16:38,640 --> 02:16:40,080 TECHNOLOGIES COMING ON NOW 3793 02:16:40,080 --> 02:16:41,960 PEOPLE PUT IN THEIR DATA, AND 3794 02:16:41,960 --> 02:16:44,800 THEY DO IT FOR PARTICULAR 3795 02:16:44,800 --> 02:16:46,760 PURPOSE, WHEN THEY FIRST START. 3796 02:16:46,760 --> 02:16:48,640 BUT THERE'S ALSO THE LIKELIHOOD 3797 02:16:48,640 --> 02:16:50,360 THAT THAT DATA IS GOING TO BE 3798 02:16:50,360 --> 02:16:52,120 USED YEARS LATER FOR THINGS THAT 3799 02:16:52,120 --> 02:16:56,840 THEY HAD NO IDEA ABOUT. 3800 02:16:56,840 --> 02:16:59,440 A BIG ETHICAL ISSUE, YOU SUBMIT 3801 02:16:59,440 --> 02:17:00,760 YOUR DATA FOR CERTAIN PROJECTS, 3802 02:17:00,760 --> 02:17:04,360 YOU KNOW, WHAT IS THE CONSENT 3803 02:17:04,360 --> 02:17:06,480 PROCESS THAT YOU AGREE TO HAVE 3804 02:17:06,480 --> 02:17:08,880 YOUR DATA USED FOR SOMETHING 3805 02:17:08,880 --> 02:17:09,200 ELSE. 3806 02:17:09,200 --> 02:17:13,160 WHICH YOU MAY NOT EVEN BE ABLE 3807 02:17:13,160 --> 02:17:14,800 TO GUESS AT. 3808 02:17:14,800 --> 02:17:18,200 LOTS OF ISSUES THAT FACE US. 3809 02:17:18,200 --> 02:17:19,960 BUT REALLY FROM THE MEETING 3810 02:17:19,960 --> 02:17:23,800 YESTERDAY AND TODAY A LOT OF 3811 02:17:23,800 --> 02:17:25,200 PROGRESS GOING ON. 3812 02:17:25,200 --> 02:17:27,320 AND STILL THINGS WE NEED TO WORK 3813 02:17:27,320 --> 02:17:28,920 OUT, PARTICULARLY ON THE HEALTH 3814 02:17:28,920 --> 02:17:33,440 EQUITY SIDE AS YOU HEARD HERE 3815 02:17:33,440 --> 02:17:33,680 TODAY. 3816 02:17:33,680 --> 02:17:34,840 THE ALZHEIMER'S ISSUE IS THE 3817 02:17:34,840 --> 02:17:36,040 REAL LESSON BECAUSE WE DON'T 3818 02:17:36,040 --> 02:17:38,240 HAVE THE DATA TO KNOW WHAT THE 3819 02:17:38,240 --> 02:17:42,360 ANTI-AM AMYLOID THERAPY IS GOINO 3820 02:17:42,360 --> 02:17:43,800 DO IN THE AFRICAN AMERICAN 3821 02:17:43,800 --> 02:17:44,200 POPULATION. 3822 02:17:44,200 --> 02:17:47,720 WE KNOW FROM THE BEGINNING THAT 3823 02:17:47,720 --> 02:17:49,920 AFRICAN AMERICANS WHO HAVE 3824 02:17:49,920 --> 02:17:52,240 DIAGNOSIS OF ALZHEIMER'S HAVE 3825 02:17:52,240 --> 02:17:53,480 LESS AMYLOID THAN CAUCASIANS. 3826 02:17:53,480 --> 02:17:56,800 WHAT DOES THAT MEAN FOR THE 3827 02:17:56,800 --> 02:18:01,520 THERAPY TO TAKE AMYLOID OUT? 3828 02:18:01,520 --> 02:18:05,440 APOE 4 LESS OF A DRIVER IN 3829 02:18:05,440 --> 02:18:07,640 ALZHEIMER'S IN THE AFRICAN 3830 02:18:07,640 --> 02:18:12,200 AMERICAN GROUP TURNS OUT TO BE A 3831 02:18:12,200 --> 02:18:13,360 MARKER THAT MAY BE 3832 02:18:13,360 --> 02:18:14,120 CONTRAINDICATION TO GETTING 3833 02:18:14,120 --> 02:18:16,200 THESE DRUGS IN THE CAUCASIAN 3834 02:18:16,200 --> 02:18:18,000 GROUP BUT WE HAVE NO IDEA IF THE 3835 02:18:18,000 --> 02:18:19,440 DRUG WORKS IN AFRICAN AMERICANS. 3836 02:18:19,440 --> 02:18:22,840 SO JUST AN EXAMPLE OF HOW WE GET 3837 02:18:22,840 --> 02:18:26,040 BURNED WHEN WE DON'T HAVE THE 3838 02:18:26,040 --> 02:18:28,120 KIND OF DATA WE NEED FROM 3839 02:18:28,120 --> 02:18:31,520 DIFFERENT POPULATIONS IN THE 3840 02:18:31,520 --> 02:18:31,840 U.S. 3841 02:18:31,840 --> 02:18:36,560 SO, I THINK WE HEARD A LOT OF 3842 02:18:36,560 --> 02:18:37,880 CHALLENGES AND SUCCESSES. 3843 02:18:37,880 --> 02:18:39,320 LOOKING FORWARD TO NEXT YEAR 3844 02:18:39,320 --> 02:18:39,640 ALREADY. 3845 02:18:39,640 --> 02:18:41,160 CAN'T WAIT. 3846 02:18:41,160 --> 00:00:00,000 THANKS VERY MUCH.