1 00:00:05,920 --> 00:00:10,960 >>HI, EVERYBODY. 2 00:00:10,960 --> 00:00:15,280 TO SEE EVERYBODY AGAIN FOR DAY TWO 3 00:00:15,280 --> 00:00:20,120 WE HAVE A FULLY-PACKED AGENDA 4 00:00:20,120 --> 00:00:23,720 TODAY ALTHOUGH WE WILL BE ENDING 5 00:00:23,720 --> 00:00:24,720 BY 2:30. 6 00:00:24,720 --> 00:00:25,600 NO LATER. 7 00:00:25,600 --> 00:00:27,480 BECAUSE OF THE WHOLE SERIES OF 8 00:00:27,480 --> 00:00:31,240 HARD STOPS THAT PEOPLE HAVE. 9 00:00:31,240 --> 00:00:34,280 THE FIRST ITEM THIS MORNING IS 10 00:00:34,280 --> 00:00:37,200 IS THE HeLA GENOME DATA ACCESS 11 00:00:37,200 --> 00:00:39,360 WORKING GROUP AND I JUST WANTED 12 00:00:39,360 --> 00:00:46,160 TO TAKE A MOMENT TO REMIND THE 13 00:00:46,160 --> 00:00:48,280 ADVISORY COMMITTEE AND THOSE 14 00:00:48,280 --> 00:00:52,080 WATCHING ABOUT HOW IMPORTANT 15 00:00:52,080 --> 00:00:54,440 THIS WORK IS. 16 00:00:54,440 --> 00:00:56,360 THIS WORKING GROUP REPRESENTS 17 00:00:56,360 --> 00:00:58,920 APP AGREEMENT BETWEEN THE NIH 18 00:00:58,920 --> 00:01:07,400 AND THE DESCEND APARTMENTS OF DA 19 00:01:07,400 --> 00:01:11,400 LACKS WHO HAD HER BIOPSY TISSUE 20 00:01:11,400 --> 00:01:13,440 USED FOR THE CELL LINE THE 21 00:01:13,440 --> 00:01:17,440 HeLA CELL LINE AND THAT HAS 22 00:01:17,440 --> 00:01:20,200 ENABLED BY OWE MEDICAL 23 00:01:20,200 --> 00:01:21,560 RESEARCHERS ACROSS THE WORLD TO 24 00:01:21,560 --> 00:01:30,360 DO MANY, MANY IMPORTANT THINGS. 25 00:01:30,360 --> 00:01:32,600 ALLOWS A FORMAL ACCESS PROCESS 26 00:01:32,600 --> 00:01:34,720 TO THE GENOME SEQUENCE DATA 27 00:01:34,720 --> 00:01:37,800 WHILE IT RESPECTING THE PROVE 28 00:01:37,800 --> 00:01:40,560 REASONSES OF THE LACKS FAMILY. 29 00:01:40,560 --> 00:01:47,320 SO THIS IS IMPORTANT. 30 00:01:47,320 --> 00:01:49,440 AS PART OF THE AGREEMENT, 31 00:01:49,440 --> 00:01:51,240 MEMBERS OF THE FAMILY, ALONG 32 00:01:51,240 --> 00:01:55,080 WITH SCIENTISTS, PHYSICIANS AND 33 00:01:55,080 --> 00:01:58,360 BIOETHISTS EVALUATE INVESTIGATOR 34 00:01:58,360 --> 00:02:01,520 PROPOSALS WHO REQUEST ACCESS TO 35 00:02:01,520 --> 00:02:05,120 HeLA CELL LINES SEQUENCE DATA. 36 00:02:05,120 --> 00:02:09,200 THE WORKING GROUP FINDINGS ARE 37 00:02:09,200 --> 00:02:11,600 REPORTED TO THE ACD AND THE ACD 38 00:02:11,600 --> 00:02:12,200 MAKES RECOMMENDATIONS THROUGH 39 00:02:12,200 --> 00:02:13,920 THE NIH DIRECTOR WILL WHETHER A 40 00:02:13,920 --> 00:02:18,200 REQUEST SHOULD BE APPROVED OR 41 00:02:18,200 --> 00:02:19,480 DISAPPROVED AND THERE THEN AS 42 00:02:19,480 --> 00:02:20,440 DECISION MADE ABOUT WHETHER 43 00:02:20,440 --> 00:02:23,000 ACCESS TO THE DATA SHOULD BE 44 00:02:23,000 --> 00:02:23,440 GRANTED. 45 00:02:23,440 --> 00:02:26,080 WE'RE REALLY GRATEFUL AT NIH FOR 46 00:02:26,080 --> 00:02:29,160 THIS REMARKABLE FAMILY'S 47 00:02:29,160 --> 00:02:31,200 CONTINUED SUPPORT OF BIOMEDICAL 48 00:02:31,200 --> 00:02:32,560 RESEARCH AND FOR THEIR 49 00:02:32,560 --> 00:02:35,360 WILLINGNESS TO COLLABORATE WITH 50 00:02:35,360 --> 00:02:37,680 US ON THIS VERY IMPORTANT ISSUE. 51 00:02:37,680 --> 00:02:41,080 AND SO, WE'LL NOW HEAR FROM THE 52 00:02:41,080 --> 00:02:45,120 HeLA WORKING GROUP CO-CHAIRS, 53 00:02:45,120 --> 00:02:46,920 Dr. GARTH GRAHAM AND LYRIC 54 00:02:46,920 --> 00:02:49,040 JORGENSON WHO WILL REPORT ON 55 00:02:49,040 --> 00:02:52,280 THIS TIME OF ONE REQUEST FOR ACD 56 00:02:52,280 --> 00:02:55,400 CONSIDERATIONS. 57 00:02:55,400 --> 00:02:59,040 AND SO, I DON'T KNOW WHO WILL 58 00:02:59,040 --> 00:02:59,400 LEAD OFF. 59 00:02:59,400 --> 00:03:01,600 >>WE'LL HAVE Dr. GRAHAM AS 60 00:03:01,600 --> 00:03:03,480 THE NEWEST CO-CHAIR. 61 00:03:03,480 --> 00:03:06,440 TURNING TO YOU, GARTH. 62 00:03:06,440 --> 00:03:07,120 >>Dr. Garth Graham: THANK YOU. 63 00:03:07,120 --> 00:03:08,920 CAN YOU HEAR ME OK? 64 00:03:08,920 --> 00:03:10,880 >>JUST FINE. 65 00:03:10,880 --> 00:03:13,960 >>GOOD, SO, I'M GARTH GRAHAM 66 00:03:13,960 --> 00:03:16,480 AND I SERVE ALONGSIDE LYRIC TO 67 00:03:16,480 --> 00:03:18,520 CO-CHAIR THE HeLA GENOME DATA 68 00:03:18,520 --> 00:03:19,920 ACCESS WORKING GROUP AND TODAY 69 00:03:19,920 --> 00:03:22,800 WE'LL BE REPORTING ALL THE 70 00:03:22,800 --> 00:03:24,520 WORKING GROUPS EVALUATION OF A 71 00:03:24,520 --> 00:03:26,520 RESEARCH PROPOSAL TO ACCESS -- 72 00:03:26,520 --> 00:03:35,680 CAN I GET OUR SLIDES UP. 73 00:03:35,680 --> 00:03:36,480 THANK YOU. 74 00:03:36,480 --> 00:03:40,240 AND SO, WE'LL GO TO THE NEXT 75 00:03:40,240 --> 00:03:40,960 SLIDE. 76 00:03:40,960 --> 00:03:44,640 SO, THE HeLA DATA USE 77 00:03:44,640 --> 00:03:47,840 AGREEMENT IS A RESULT OF THE NIH 78 00:03:47,840 --> 00:03:49,480 FAMILY AGREEMENT AND IT EXPECTED 79 00:03:49,480 --> 00:03:52,680 NIH FUNDED INVESTIGATORS WHO 80 00:03:52,680 --> 00:03:55,400 GENERATOR HUGHES HeLA GENOME 81 00:03:55,400 --> 00:03:57,720 SEQUENCE DATA THROUGH A PATHWAY 82 00:03:57,720 --> 00:04:02,680 USING THE DATA OF GENOTYPE AND 83 00:04:02,680 --> 00:04:04,200 PHENOTYPE AND OTHERS ARE URGED 84 00:04:04,200 --> 00:04:08,640 TO DO THE SAME AND ACCESS THIS 85 00:04:08,640 --> 00:04:10,120 INVESTIGATORS AGREED TO THREE 86 00:04:10,120 --> 00:04:11,280 THINGS. 87 00:04:11,280 --> 00:04:13,280 ABIDE BY TERMS SET FOURTH IN THE 88 00:04:13,280 --> 00:04:15,520 HeLA GENOME USE AGREEMENT AND 89 00:04:15,520 --> 00:04:17,920 TO ACKNOWLEDGE THE LACKS FAMILY 90 00:04:17,920 --> 00:04:19,520 FOR THEIR CONTRIBUTIONS AND 91 00:04:19,520 --> 00:04:21,120 PUBLICATIONS RESULTING THE 92 00:04:21,120 --> 00:04:23,200 GENERATION OR USE OF WHOLE 93 00:04:23,200 --> 00:04:27,800 GENOME SEQUENCE DATA FROM THE 94 00:04:27,800 --> 00:04:29,680 HeLA DATA AND THE GENOME 95 00:04:29,680 --> 00:04:31,800 SEQUENCE DATA GENERATED FROM 96 00:04:31,800 --> 00:04:33,000 HeLA CELLS INTO THE DATABASE 97 00:04:33,000 --> 00:04:43,480 OF GENOTYPE AND PHENOTYPE. 98 00:04:49,920 --> 00:04:51,880 THE WORKING GROUP COP CYSTS OF 99 00:04:51,880 --> 00:04:56,960 SCIENTISTS, PHYSICIANS, BIO ETH 100 00:04:56,960 --> 00:04:59,680 A SIS AND THE DEACCEPTED ANTS OF 101 00:04:59,680 --> 00:05:00,920 THE LACKS FAMILY. 102 00:05:00,920 --> 00:05:03,720 AND WE HAVE DAVID LACKS JUNIOR, 103 00:05:03,720 --> 00:05:07,000 HER GRANDDAUGHTER AND HER GREAT 104 00:05:07,000 --> 00:05:10,840 GRAND DAUGHTER ON THE WORKING 105 00:05:10,840 --> 00:05:12,080 GROUP AS WELL. 106 00:05:12,080 --> 00:05:14,280 SO, THE HeLA DATA USE 107 00:05:14,280 --> 00:05:16,040 AGREEMENT ADVISES THE 108 00:05:16,040 --> 00:05:17,360 INVESTIGATOR TO ADDRESS THESE 109 00:05:17,360 --> 00:05:19,720 CRITERIA IN THEIR RESEARCH USE 110 00:05:19,720 --> 00:05:22,840 STATEMENT, IN ADDITION TO THIS 111 00:05:22,840 --> 00:05:23,800 OBJECTIVES, DESIGNED AND ALLOWS 112 00:05:23,800 --> 00:05:25,560 US TIME OF THE PROPOSED RESEARCH 113 00:05:25,560 --> 00:05:27,480 AND PROVIDE A STATEMENT 114 00:05:27,480 --> 00:05:30,880 EXPLAINING WHY EXACTLY THE 115 00:05:30,880 --> 00:05:32,760 HeLA CELL DENOAM IS VALUE 116 00:05:32,760 --> 00:05:34,960 BEFORE THE PROPOSED RESEARCH. 117 00:05:34,960 --> 00:05:40,440 PERHAPS PLANS LIKE IP OR PRODUCE 118 00:05:40,440 --> 00:05:42,080 IS NOT USED TO MAKE THE 119 00:05:42,080 --> 00:05:43,280 EVALUATION THOUGH WE OBTAIN THIS 120 00:05:43,280 --> 00:05:45,400 INFORMATION PRIMARILY FOR 121 00:05:45,400 --> 00:05:46,440 DISCLOSURE PURPOSES. 122 00:05:46,440 --> 00:05:48,680 AND THE EVALUATION REALLY DOES 123 00:05:48,680 --> 00:05:49,520 NOT I AM CONCLUDE ANY EVALUATION 124 00:05:49,520 --> 00:05:52,640 OF THE ACTUAL SCIENTIFIC MERITS 125 00:05:52,640 --> 00:05:58,360 OF THE RESEARCH. 126 00:05:58,360 --> 00:06:00,280 SO, THIS SLIDE IS A QUICK 127 00:06:00,280 --> 00:06:01,960 SNAPSHOT OF THE STATISTICS OF 128 00:06:01,960 --> 00:06:03,600 REQUEST, EVALUATED BY THE 129 00:06:03,600 --> 00:06:05,000 WORKING GROUP AND APPROVED BY 130 00:06:05,000 --> 00:06:06,760 THE NIH DIRECTOR. 131 00:06:06,760 --> 00:06:08,960 THERE ARE INSTANCES WHEN REPORTS 132 00:06:08,960 --> 00:06:10,240 HAVE BEEN DISAPPROVED AND 133 00:06:10,240 --> 00:06:11,800 REQUESTS WILL BE DISAPPROVED, 134 00:06:11,800 --> 00:06:13,720 SPECIFICALLY IF THEY DON'T MEET 135 00:06:13,720 --> 00:06:15,120 EXPECTATIONS DESCRIBED IN THE 136 00:06:15,120 --> 00:06:16,640 HeLA DATA USE AGREEMENT THAT I 137 00:06:16,640 --> 00:06:18,240 A ALLUDED TO EARLIER. 138 00:06:18,240 --> 00:06:21,360 TODAY WE'LL REREPORT THE 139 00:06:21,360 --> 00:06:27,040 EVALUATION OF ONE REQUEST MADE. 140 00:06:27,040 --> 00:06:28,720 SO, HAD HAD REQUEST WAS FROM THE 141 00:06:28,720 --> 00:06:32,720 UNIVERSITY OF KANSAS AND THE 142 00:06:32,720 --> 00:06:34,760 ACCESS TO THE HeLA CELL LINE 143 00:06:34,760 --> 00:06:36,040 SEQUENCE DATA TO INVESTIGATE HOW 144 00:06:36,040 --> 00:06:38,960 THE LOCATION OF RNA BINDING 145 00:06:38,960 --> 00:06:40,560 PROTEINS INFLUENCE BIOLOGIC 146 00:06:40,560 --> 00:06:41,840 PROCESSES LIKE INFLAMMATION. 147 00:06:41,840 --> 00:06:44,000 AND THE WORKING GROUP EVALUATED 148 00:06:44,000 --> 00:06:46,200 THIS REQUEST AND FOUND THE 149 00:06:46,200 --> 00:06:47,440 REQUEST FROM THE UNIVERSITY OF 150 00:06:47,440 --> 00:06:49,600 KANSAS TO BE CONSISTENT WITH THE 151 00:06:49,600 --> 00:06:50,720 HeLA DATA USE AGREEMENT AND 152 00:06:50,720 --> 00:06:52,400 WITH THAT I'M GOING TO TURN IT 153 00:06:52,400 --> 00:06:57,200 BACK OVER TO LARRY AND ACD FOR 154 00:06:57,200 --> 00:06:59,040 THE DISCUSSION. 155 00:06:59,040 --> 00:07:00,200 >>THANK YOU, VERY MUCH. 156 00:07:00,200 --> 00:07:02,600 THAT WAS VERY CLEAR AND I 157 00:07:02,600 --> 00:07:03,240 APPRECIATE IT. 158 00:07:03,240 --> 00:07:05,600 ARE THERE ANY COMMENTS OR 159 00:07:05,600 --> 00:07:08,080 QUESTIONS FROM THE ACD MEMBERS? 160 00:07:08,080 --> 00:07:12,400 EITHER HERE IN THE ROOM OR ON 161 00:07:12,400 --> 00:07:19,920 THE VIRTUAL -- CAN WE GO BACK TO 162 00:07:19,920 --> 00:07:20,520 SEEING EVERYBODY. 163 00:07:20,520 --> 00:07:26,440 WHY IF ANYBODY ON ZOOM IS 164 00:07:26,440 --> 00:07:28,760 I DON'T KNOW IF ANYBODY ON ZOOM 165 00:07:28,760 --> 00:07:30,680 RAISING THEIR HAND. 166 00:07:30,680 --> 00:07:32,280 VERY GOOD. 167 00:07:32,280 --> 00:07:33,680 THANK YOU. 168 00:07:33,680 --> 00:07:39,720 SO, WHAT I THEN NEED IS A MOTION 169 00:07:39,720 --> 00:07:44,320 TO ACCEPT THE REPORT AS 170 00:07:44,320 --> 00:07:44,560 DELIVERED. 171 00:07:44,560 --> 00:07:48,160 >>I MOVE TO ACCEPT THE REPORT 172 00:07:48,160 --> 00:07:48,720 AS DELIVERED. 173 00:07:48,720 --> 00:07:49,120 >>SECOND. 174 00:07:49,120 --> 00:07:49,960 >>SECOND. 175 00:07:49,960 --> 00:07:51,840 >>THANK YOU. 176 00:07:51,840 --> 00:07:58,200 >>ANY FURTHER DISCUSSION? 177 00:07:58,200 --> 00:07:58,400 OK. 178 00:07:58,400 --> 00:08:01,120 ALL IN AGREEMENT SAY AYE. 179 00:08:01,120 --> 00:08:03,840 >>AYE. 180 00:08:03,840 --> 00:08:09,440 >>ANY OPPOSED A NAY. 181 00:08:09,440 --> 00:08:15,960 ARE THERE ANY ABSTENTIONS? 182 00:08:15,960 --> 00:08:18,200 IT THANK YOU. 183 00:08:18,200 --> 00:08:20,600 MOTION CARRIES WITH UNANIMOUS 184 00:08:20,600 --> 00:08:22,520 APPROVAL AND I WILL TAKE THAT 185 00:08:22,520 --> 00:08:24,240 MOTION UNDER ADVISEMENT AND MAKE 186 00:08:24,240 --> 00:08:26,240 A DECISION IN THE VERY NEAR 187 00:08:26,240 --> 00:08:26,480 FUTURE. 188 00:08:26,480 --> 00:08:27,840 SO THANK YOU FOR THE GOOD WORK 189 00:08:27,840 --> 00:08:30,440 OF THE COMMITTEE AND THANK YOU 190 00:08:30,440 --> 00:08:32,800 ACD FOR YOUR APPROVAL. 191 00:08:32,800 --> 00:08:36,200 I'M GOING TO TURN IT TO TARA TO 192 00:08:36,200 --> 00:08:40,480 LEAD US THROUGH THE REST OF THE 193 00:08:40,480 --> 00:08:40,720 MORNING. 194 00:08:40,720 --> 00:08:42,520 >>GREAT, THANK YOU, LARRY. 195 00:08:42,520 --> 00:08:45,920 SO, WE'LL VENTURE INTO THE NEXT 196 00:08:45,920 --> 00:08:51,080 SESSION, THE TOPIC PROVIDING 197 00:08:51,080 --> 00:08:52,160 INFORMATION ON UP WITH OF THE 198 00:08:52,160 --> 00:08:54,040 BIG INITIATIVES THAT WE HAVE IN 199 00:08:54,040 --> 00:08:55,520 RESPONSE TO THE COVID-19 200 00:08:55,520 --> 00:08:58,160 PANDEMIC AND THAT'S OUR RECOVER 201 00:08:58,160 --> 00:08:59,760 INITIATIVE AND THAT HAVE LOOKING 202 00:08:59,760 --> 00:09:04,000 AT TRYING TO FIGURE OUT VARIOUS 203 00:09:04,000 --> 00:09:09,000 FEATURES OF WHAT KNOWN AS PASC. 204 00:09:09,000 --> 00:09:19,760 POST ACUTE SEE QUE SEQUELAE OF 205 00:09:32,680 --> 00:09:39,720 SARS-CoV-2. 206 00:09:39,720 --> 00:09:43,200 >>GOOD MORNING, THANK YOU FOR 207 00:09:43,200 --> 00:09:43,880 THE OPPORTUNITY. 208 00:09:43,880 --> 00:09:45,960 I'M STANDING HERE AS A CO-CHAIR 209 00:09:45,960 --> 00:09:50,000 AS YOU CAN SEE OPT SLI ON THE ST 210 00:09:50,000 --> 00:09:59,240 THE CHARGERS INCLUDE TONY FAUCI 211 00:09:59,240 --> 00:10:01,360 AND SENIOR LEADERS ACROSS THE 212 00:10:01,360 --> 00:10:04,000 NIH AS PART OF THIS TRANS NIH 213 00:10:04,000 --> 00:10:08,040 EFFORT AND OBVIOUSLY I DREW THE 214 00:10:08,040 --> 00:10:13,440 SHORT STRAW TODAY O I TODAY SOE 215 00:10:13,440 --> 00:10:14,520 HOPPER OF TELLING WHERE YOU ARE 216 00:10:14,520 --> 00:10:17,920 WE ARE IN THE CURRENT STATE. 217 00:10:17,920 --> 00:10:21,520 SO FIRST, THE CHALLENGE THAT 218 00:10:21,520 --> 00:10:23,520 WE'VE BEEN GIVEN AS PART OF THIS 219 00:10:23,520 --> 00:10:26,640 RECOVERY INITIATIVE, IS TO 220 00:10:26,640 --> 00:10:28,400 RECOGNIZE THAT THERE HAVE BEEN 221 00:10:28,400 --> 00:10:33,600 THESE POST ACUTE SEQUELAE COVID 222 00:10:33,600 --> 00:10:36,520 THAT PROBABLY FOLLOWS IN A 223 00:10:36,520 --> 00:10:41,040 PATTERN CONSISTENT WITH OTHER 224 00:10:41,040 --> 00:10:41,800 POST-VIRAL SYNDROMES BUT STILL 225 00:10:41,800 --> 00:10:44,880 REPRESENTS A DISTINCTIVE 226 00:10:44,880 --> 00:10:47,120 MULTI-SYSTEM DISORDER THAT WE 227 00:10:47,120 --> 00:10:50,280 NEED TO CHARACTERIZE BECAUSE 228 00:10:50,280 --> 00:10:51,560 THERE'S VERY LITTLE KNOWN ABOUT 229 00:10:51,560 --> 00:10:51,880 IT. 230 00:10:51,880 --> 00:10:53,720 IT'S PART OF IT IT IS IS 231 00:10:53,720 --> 00:10:56,680 DAUNTING CHARACTERISTICS IS THE 232 00:10:56,680 --> 00:10:59,360 BREADTH OF ITS INVOLVEMENT AND 233 00:10:59,360 --> 00:11:03,080 THE VARIETY OF SYMPTOMS THAT 234 00:11:03,080 --> 00:11:06,160 HAVE BEEN ASSOCIATED WITH IT 235 00:11:06,160 --> 00:11:12,800 THAT APPEAR THAT EFFECT EVERY 236 00:11:12,800 --> 00:11:16,720 PHYSICIANS ARE AWARE OF AND 237 00:11:16,720 --> 00:11:18,520 EFFECT EVERY ORGANIZE ON AND 238 00:11:18,520 --> 00:11:20,360 BODY SYSTEM SO THAT REPRESENTS A 239 00:11:20,360 --> 00:11:25,040 PARTICULAR CHALLENGE AS THE 240 00:11:25,040 --> 00:11:27,080 DATES NECESSITATE A 241 00:11:27,080 --> 00:11:28,240 CROSS-DISCIPLINARY APPROACH THAT 242 00:11:28,240 --> 00:11:30,560 SOMETIMES IS DIFFICULT ACROSS 243 00:11:30,560 --> 00:11:34,160 INSTITUTES ACROSS CLINICAL 244 00:11:34,160 --> 00:11:35,560 DISCIPLINES AND RESEARCH REMAINS 245 00:11:35,560 --> 00:11:37,040 AND IT'S PART OF THE RECOGNIZING 246 00:11:37,040 --> 00:11:39,760 THE COMPLEXITY OF ADDRESSING OF 247 00:11:39,760 --> 00:11:42,400 THIS AND DOING IT WITH THE SENSE 248 00:11:42,400 --> 00:11:45,400 OF URGENCY AS DEMANDED BY THE 249 00:11:45,400 --> 00:11:47,400 RELIEF OF SUFFERING FROM THE 250 00:11:47,400 --> 00:11:53,400 PATIENTS AFFLICTED WITH THIS 251 00:11:53,400 --> 00:11:54,320 REHABILITATING DISORDER. 252 00:11:54,320 --> 00:12:03,520 TOWARD THAT END, THE GOALS ARE 253 00:12:03,520 --> 00:12:09,600 TO RAPIDLY -- CAN YOU GO BACK 254 00:12:09,600 --> 00:12:09,960 ONE? 255 00:12:09,960 --> 00:12:12,800 THE GOAL IS TO RAPIDLY 256 00:12:12,800 --> 00:12:14,400 ACCELERATE AND ADVANCE OUR 257 00:12:14,400 --> 00:12:22,880 UNDERSTANDING OF PA IASC OF 258 00:12:22,880 --> 00:12:24,520 PREDICTING, DIAGNOSING, TREATING 259 00:12:24,520 --> 00:12:28,160 AND PREVENTING THIS DISORDER, 260 00:12:28,160 --> 00:12:31,080 ULTIMATELY AND SEVERAL SPECIFIC 261 00:12:31,080 --> 00:12:32,720 AIMS, ONE TO UNDERSTAND THAT 262 00:12:32,720 --> 00:12:34,680 CLINICAL SPECTRUM, THAT 263 00:12:34,680 --> 00:12:37,520 TRAJECTORY OF RECOVERY IN 264 00:12:37,520 --> 00:12:41,360 ADDITION, STARTING TO UNPACK 265 00:12:41,360 --> 00:12:43,840 THOSE RISK FACTORS AND THE 266 00:12:43,840 --> 00:12:47,120 PREVALENCE OF THIS DISORDER AS 267 00:12:47,120 --> 00:12:51,800 WELL AS POTENTIALLY SOME OF THE 268 00:12:51,800 --> 00:12:53,600 SUB-PHENOTYPES AS PART OF IT, 269 00:12:53,600 --> 00:12:56,120 ULTIMATELY GETTING DEEPER INTO 270 00:12:56,120 --> 00:12:57,240 UNDERSTANDING ITS PATHOGENESIS 271 00:12:57,240 --> 00:13:02,280 AND HAVING A MECHANIC NICE TICK 272 00:13:02,280 --> 00:13:03,480 AND IT'S MORE THAN ONE ENTITY 273 00:13:03,480 --> 00:13:07,000 AND THERE MAY BE MULTIPLE 274 00:13:07,000 --> 00:13:10,160 BIOLOGICAL PATHWAYS THAT 275 00:13:10,160 --> 00:13:11,320 CONTRIBUTE TO IT'S HETEROGENEITY 276 00:13:11,320 --> 00:13:14,080 AND THAT ULTIMATELY, THAT 277 00:13:14,080 --> 00:13:15,800 FURTHER UNDERSTANDING SHOULD 278 00:13:15,800 --> 00:13:25,000 HELP US TO INFORM INTERVENTIONS 279 00:13:25,000 --> 00:13:26,680 AS WE DEVELOP MORE EFFECTIVE 280 00:13:26,680 --> 00:13:28,240 TREATMENTS AND PREVENTION 281 00:13:28,240 --> 00:13:28,560 STRATEGIES. 282 00:13:28,560 --> 00:13:29,760 APPROXIMATE ADDITION TO THESE 283 00:13:29,760 --> 00:13:35,720 SORT OF AIMS, WE HAVE EP DO YOUD 284 00:13:35,720 --> 00:13:36,880 TO GUIDING PRINCIPLES. 285 00:13:36,880 --> 00:13:43,720 ONE FROM THE VERY INCEPTION WAS 286 00:13:43,720 --> 00:13:46,560 TO APPRECIATE VALUE, VALIDATE, 287 00:13:46,560 --> 00:13:50,040 THE SUFFERING A PATIENTS WOULD 288 00:13:50,040 --> 00:13:51,520 HAVE BEEN UNDER IN THE PAST. 289 00:13:51,520 --> 00:13:55,480 SINCE EARLY DAYS OF THE PANDEMIC 290 00:13:55,480 --> 00:14:01,400 AND TO IENSURE PATIENTS ARE ACTE 291 00:14:01,400 --> 00:14:03,240 PARTICIPANTS AND PARTNERS 292 00:14:03,240 --> 00:14:06,040 EMBEDDED WITHIN THE INITIATIVE 293 00:14:06,040 --> 00:14:10,840 AT EVERY LEVEL INCLUDING AT THE 294 00:14:10,840 --> 00:14:13,280 MOST, THE HIGHEST LEVELS OF 295 00:14:13,280 --> 00:14:16,320 EXECUTIVE DECISION-MAKING AND SO 296 00:14:16,320 --> 00:14:18,760 WE STRIVE TO QUITE FRANKLY RAISE 297 00:14:18,760 --> 00:14:20,800 THE BARF PATIENTS-CENTEREDNESS 298 00:14:20,800 --> 00:14:22,560 AND PATIENT ENGAGEMENT FOR AN 299 00:14:22,560 --> 00:14:24,480 NIH STUDY AND WE'RE ENDEAVORING 300 00:14:24,480 --> 00:14:27,560 TO ENSURE THAT WE'RE HOPEFULLY 301 00:14:27,560 --> 00:14:31,560 CREATING A MODEL THAT WE CAN 302 00:14:31,560 --> 00:14:33,200 CONTINUE TO BUILD UPON, 303 00:14:33,200 --> 00:14:34,520 RECOGNIZING THAT THIS IS A 304 00:14:34,520 --> 00:14:36,560 RECOGNIZE AND THAT WE'RE DOING 305 00:14:36,560 --> 00:14:37,480 SOME THINGS THAT DON'T HAVE A 306 00:14:37,480 --> 00:14:40,720 LOT OF PRECEDENCE AND WE'LL 307 00:14:40,720 --> 00:14:41,640 LEARN IN THINGS ALONG THE WAY 308 00:14:41,640 --> 00:14:43,400 AND THERE ARE BUMPS ALONG THE 309 00:14:43,400 --> 00:14:45,280 WAY IN THAT PROCESS BUT WE'RE 310 00:14:45,280 --> 00:14:48,280 COMMITTED TO IT AS A 311 00:14:48,280 --> 00:14:49,400 PARTNERSHIP. 312 00:14:49,400 --> 00:14:50,960 SIMILARLY, A KEY GUIDING 313 00:14:50,960 --> 00:14:53,680 PRINCIPLE, IS THAT WE'RE DOING 314 00:14:53,680 --> 00:14:59,400 SOMETHING AT SCALE AND 315 00:14:59,400 --> 00:15:00,520 THEREFORE, SHOULD BE REFLECT 316 00:15:00,520 --> 00:15:01,680 TIVE OF THE POPULATIONS AND 317 00:15:01,680 --> 00:15:11,400 COMMUNITIES THAT ARE EFFECTED OF 318 00:15:11,400 --> 00:15:12,920 COVID HAD ON COMMUNITIES. 319 00:15:12,920 --> 00:15:14,480 O WE'RE COMMITTED AS A GUIDING 320 00:15:14,480 --> 00:15:16,560 PRINCIPLE TO INCLUSIVE 321 00:15:16,560 --> 00:15:18,480 PARTICIPATION AND A DIVERSITY 322 00:15:18,480 --> 00:15:25,040 ACROSS MULTIPLE DIMENSIONS. 323 00:15:25,040 --> 00:15:30,600 OF IN ADDITION, WE ARE 324 00:15:30,600 --> 00:15:31,880 ENCOURAGED BY SOME OF THE 325 00:15:31,880 --> 00:15:33,040 EXPERIENCES AND LESSONS LEARNED 326 00:15:33,040 --> 00:15:35,640 FROM OUR APPROACHES TO ACUTE 327 00:15:35,640 --> 00:15:38,480 COVID IN WHICH WE'VE TRIED TO 328 00:15:38,480 --> 00:15:40,760 ADAPT PLATFORMS, OFTEN 329 00:15:40,760 --> 00:15:42,160 LEVERAGING EXISTING ASSETS IN 330 00:15:42,160 --> 00:15:44,200 ORDER TO HOPE ACCELERATE THIS 331 00:15:44,200 --> 00:15:46,440 WHOLE PROCESS AND WE WANT TO BE 332 00:15:46,440 --> 00:15:50,680 SURE THAT THE ADAPTIVE PLATFORM 333 00:15:50,680 --> 00:15:53,680 APPROACH FACILITATES THE USE OF 334 00:15:53,680 --> 00:15:56,720 COMMON DATA ELEMENTS, COMMON 335 00:15:56,720 --> 00:15:58,040 APPROACHES, SUCH THAT WE'RE 336 00:15:58,040 --> 00:16:01,600 CREATING A COLLECTIVE AND A 337 00:16:01,600 --> 00:16:04,720 CONSORTIUM THAT HOPEFULLY CAN 338 00:16:04,720 --> 00:16:08,880 ROW IN A SIMILAR DIRECTION AS 339 00:16:08,880 --> 00:16:11,440 OPPOSED MA SMALL PROJECTS THAT 340 00:16:11,440 --> 00:16:14,080 WOULD BE HARD TO KNIT TOGETHER 341 00:16:14,080 --> 00:16:15,440 AND GET COHERENT UNDERSTANDING 342 00:16:15,440 --> 00:16:16,360 TO FILL THE AIMS. 343 00:16:16,360 --> 00:16:18,360 SO PART OF THAT AGAIN, IS THAT 344 00:16:18,360 --> 00:16:20,600 CONVENING OF THE COLLECTIVE 345 00:16:20,600 --> 00:16:22,000 CONSORTIUM TO WORK TOGETHER. 346 00:16:22,000 --> 00:16:28,200 AND FINALLY, WE'RE NOT TREATING 347 00:16:28,200 --> 00:16:31,120 THIS LIKE A FIVE YEAR RO1 SO 348 00:16:31,120 --> 00:16:32,760 WE'VE LEVERAGED THE OTHER 349 00:16:32,760 --> 00:16:33,560 TRANSACTION AUTHORITY 350 00:16:33,560 --> 00:16:34,760 CAPABILITIES OF FLEXIBILITY 351 00:16:34,760 --> 00:16:36,400 FUNDING MECHANISMS TO ENABLE US 352 00:16:36,400 --> 00:16:40,640 TO BE MORE ADAPTIVE SUCH THAT 353 00:16:40,640 --> 00:16:41,920 ALLOWED THE IDEAS AND THOUGHTS 354 00:16:41,920 --> 00:16:43,960 AND PREDICTIONS THAT WE HAD IN 355 00:16:43,960 --> 00:16:46,040 YEAR ONE AS WE LEARNED MORE 356 00:16:46,040 --> 00:16:47,640 ABOUT THIS OF SYNDROME AND WHAT 357 00:16:47,640 --> 00:16:50,160 IS WORKING AND WHAT'S NOT. 358 00:16:50,160 --> 00:16:52,440 WE MAY NEED TO PIVOT AND CHANGE 359 00:16:52,440 --> 00:16:54,560 IN YEAR TWO AND YEAR THREE. 360 00:16:54,560 --> 00:16:56,920 SO WE INITIATED IT IT LAUNCH 361 00:16:56,920 --> 00:16:59,880 WITH THAT NOTION OF BEING 362 00:16:59,880 --> 00:17:01,200 ADAPTIVE AND THAT'S SOMETIMES A 363 00:17:01,200 --> 00:17:03,560 CHALLENGE IN THE RESEARCH REALM 364 00:17:03,560 --> 00:17:05,960 AND IN OUR NIH FUNDING PROGRAMS 365 00:17:05,960 --> 00:17:07,400 USUALLY BUT WE'RE COMMITTED TO 366 00:17:07,400 --> 00:17:09,360 DOING THAT AND RECOVER. 367 00:17:09,360 --> 00:17:13,000 NEXT SLIDE, PLEASE. 368 00:17:13,000 --> 00:17:17,240 TOWARD THAT END, I WANT TO CITE 369 00:17:17,240 --> 00:17:19,160 THE NOTION THIS IS ALL PART OF A 370 00:17:19,160 --> 00:17:22,720 OF WHOLE OF GOVERNMENT APPROACH 371 00:17:22,720 --> 00:17:24,040 THAT HAS BEEN CAPTURED BOTH IN 372 00:17:24,040 --> 00:17:27,160 THE EXECUTIVE STATEMENTS AS WELL 373 00:17:27,160 --> 00:17:30,840 AS WHITE HOUSE INITIATIVES THAT 374 00:17:30,840 --> 00:17:34,040 HAD BEEN LED IN PART BY THE HHS 375 00:17:34,040 --> 00:17:40,920 AND ASSIST APARTMENT SECRETARY T 376 00:17:40,920 --> 00:17:45,000 WITH A ACTION AROUND LONG COVID 377 00:17:45,000 --> 00:17:46,720 THAT BRINGS ENTITIES WITH ASSETS 378 00:17:46,720 --> 00:17:48,680 IN THIS SPACE AND VERY 379 00:17:48,680 --> 00:17:49,840 COMPLIMENTARY WAY AND YOU CAN 380 00:17:49,840 --> 00:17:51,760 SEE ON THIS SLIDE, A NUMBER OF 381 00:17:51,760 --> 00:17:54,880 THE KEY AREAS, I AND WON'T DWELL 382 00:17:54,880 --> 00:17:56,320 ON THAT BUT IT'S ATTEMPTING TO 383 00:17:56,320 --> 00:17:59,520 TAKE A COMPREHENSIVE APPROACH TO 384 00:17:59,520 --> 00:18:02,000 LONG COVID THAT SPANS THE NIH 385 00:18:02,000 --> 00:18:05,840 PART WHICH THE RESEARCH AND 386 00:18:05,840 --> 00:18:08,320 UNDERSTANDING OF PAST AS WELL AS 387 00:18:08,320 --> 00:18:09,880 ITS TREATMENT AND DIAGNOSIS BUT 388 00:18:09,880 --> 00:18:13,920 ALSO RECOGNIZING THAT IT HAS 389 00:18:13,920 --> 00:18:20,680 IMPLICATIONS BECAUSE MILLIONS OF 390 00:18:20,680 --> 00:18:24,360 AMERICANS MAY HAVE THIS AND 391 00:18:24,360 --> 00:18:26,120 REIMBURSEMENT AND MANY OTHER 392 00:18:26,120 --> 00:18:28,120 ELEMENTS THAT THESE AGENCIES 393 00:18:28,120 --> 00:18:29,920 DEAL WITH AND THERE'S A DESIRE 394 00:18:29,920 --> 00:18:33,240 TO HAVE THAT COHERENT APPROACH 395 00:18:33,240 --> 00:18:37,440 THAT'S COMPLIMENTARY. 396 00:18:37,440 --> 00:18:40,640 TOWARD THAT END, IN KEEPING WITH 397 00:18:40,640 --> 00:18:45,000 THOSE GUIDING PRINCIPLES, WE'VE 398 00:18:45,000 --> 00:18:48,640 ENDEAVORED T TO ENSURE PATIENTS 399 00:18:48,640 --> 00:18:53,000 ARE MEANINGFULLY ENGAGED 400 00:18:53,000 --> 00:18:55,080 THROUGHOUT RECOVER AND WOVEN 401 00:18:55,080 --> 00:18:57,720 INTO ALMOST EVERY ELEMENT OF 402 00:18:57,720 --> 00:19:01,560 RECOVER AND IN DEED, TOWARD THAT 403 00:19:01,560 --> 00:19:03,680 END, WE ESTABLISHED WITHIN 404 00:19:03,680 --> 00:19:07,240 RECOVER A CENTRAL ROLE FOR 405 00:19:07,240 --> 00:19:09,080 NATIONAL COMMUNITY ENGAGEMENT 406 00:19:09,080 --> 00:19:10,080 GROUP WHICH FUNCTIONS AS PART OF 407 00:19:10,080 --> 00:19:12,720 THE GOVERNANCE STRUCTURE TO 408 00:19:12,720 --> 00:19:16,760 PROVIDE H THAT PERSPECTIVE, 409 00:19:16,760 --> 00:19:19,720 SIMILARLY, THERE'S MEANINGFUL 410 00:19:19,720 --> 00:19:21,560 PATIENT ENGAGEMENT THROUGHOUT 411 00:19:21,560 --> 00:19:22,520 THE STEERING COMMITTEE AND 412 00:19:22,520 --> 00:19:24,000 EXECUTIVE COMMITTEE IN DEED 413 00:19:24,000 --> 00:19:25,480 THEY'RE PART OF WRITING THE 414 00:19:25,480 --> 00:19:26,920 PROTOCOL, DEVELOPING THE 415 00:19:26,920 --> 00:19:29,000 PROTOCOLS AND HELPING WITH THE 416 00:19:29,000 --> 00:19:31,360 PRIORITIZATION OF INTERVENTIONS 417 00:19:31,360 --> 00:19:34,080 AND A VARIETY OF WAYS AND THIS 418 00:19:34,080 --> 00:19:36,240 IS INVOLVED SURVEYS, FOCUS 419 00:19:36,240 --> 00:19:39,280 GROUPS, WORKING GROUPS, AND AS I 420 00:19:39,280 --> 00:19:41,080 SAY, THROUGHOUT AND IT'S 421 00:19:41,080 --> 00:19:43,240 INVOLVED LITERALLY AS YOU SEE 422 00:19:43,240 --> 00:19:46,080 THERE THOUSANDS OF INTERACTIONS 423 00:19:46,080 --> 00:19:48,920 AND INDIVIDUALS AT EVERY LEVEL 424 00:19:48,920 --> 00:19:50,720 BOTH LOCAL AS WELL AS CENTRALLY 425 00:19:50,720 --> 00:19:53,520 SO WE'RE COMMITTED TO THIS AND 426 00:19:53,520 --> 00:19:55,840 ENSURING THAT THIS ALSO A WORK 427 00:19:55,840 --> 00:19:57,160 IN PROGRESS. 428 00:19:57,160 --> 00:20:04,000 MANY NIH INVESTIGATORS DON'T 429 00:20:04,000 --> 00:20:05,320 TYPICALLY WORK SHOULDER BY 430 00:20:05,320 --> 00:20:06,560 SHOULDER WITH PATIENTS WHO HAVE 431 00:20:06,560 --> 00:20:08,040 A VOICE AT THE TABLE SO THIS IS 432 00:20:08,040 --> 00:20:17,680 A LEARNING PROCESS OF AND YOU 433 00:20:17,680 --> 00:20:22,000 DEGREES YOU MAY HAVE IN YOUR AND 434 00:20:22,000 --> 00:20:24,400 SO THIS IS IMPORTANT ELEMENT OF 435 00:20:24,400 --> 00:20:25,000 THE PROGRAM. 436 00:20:25,000 --> 00:20:27,240 NEXT SLIDE, PLEASE. 437 00:20:27,240 --> 00:20:31,960 SO SIMILARLY, WE KNOW THAT ACUTE 438 00:20:31,960 --> 00:20:35,120 COVID DISPROPORTIONATELY 439 00:20:35,120 --> 00:20:36,800 EFFECTED CERTAIN COMMUNITIES AND 440 00:20:36,800 --> 00:20:43,760 ACTUALLY PRELIMINARY DATA FROM 441 00:20:43,760 --> 00:20:45,200 RECOVER THAT'S PLAYING OUT WITH 442 00:20:45,200 --> 00:20:49,160 REGARD TO PASTOR LONG COVID AS 443 00:20:49,160 --> 00:20:50,800 WELL SO IN ANTICIPATION TO THAT 444 00:20:50,800 --> 00:20:56,600 WE NIEHS IF KNEW IF WE WERE GOIO 445 00:20:56,600 --> 00:20:58,520 CREATE A STUDY WE WANTED TO BE 446 00:20:58,520 --> 00:21:01,760 SURE IT REFLECTED AMERICA BUT 447 00:21:01,760 --> 00:21:02,960 REFLECTED THOSE 448 00:21:02,960 --> 00:21:04,560 DISPROPORTIONATELY EFFECTED BY 449 00:21:04,560 --> 00:21:08,320 COVID AND IN PARTICULAR, WITH 450 00:21:08,320 --> 00:21:09,800 LONG COVID, THIS PRESENTS 451 00:21:09,800 --> 00:21:12,200 ADDITIONAL CHALLENGES BECAUSE 452 00:21:12,200 --> 00:21:15,400 QUITE FRANKLY, A NUMBER OF THE 453 00:21:15,400 --> 00:21:20,800 ON-LINE SURVEYS OFTEN HAVE 454 00:21:20,800 --> 00:21:23,080 VICTIMS OR WHITE OF EUROPEAN 455 00:21:23,080 --> 00:21:26,720 ANCESTRY IN THE 80% TO 85% 456 00:21:26,720 --> 00:21:26,920 RANGE. 457 00:21:26,920 --> 00:21:28,880 IT MAY NOT BE SURPRISING, IT'S 458 00:21:28,880 --> 00:21:32,520 OFTEN HIGHLY EDUCATED, OFTEN 459 00:21:32,520 --> 00:21:35,520 WHITE, AND OFTEN FEMALE AND 460 00:21:35,520 --> 00:21:37,200 THERE'S A SKEWING OF THOSE 461 00:21:37,200 --> 00:21:40,760 SAMPLE SETS RELATED O THAT. 462 00:21:40,760 --> 00:21:45,800 AGAIN, RECOGNIZING THAT FEMALE 463 00:21:45,800 --> 00:21:48,240 SEX MAY BE A PRE DISPOSING 464 00:21:48,240 --> 00:21:49,600 FACTOR BUT WE WANT TO MAKE SURE 465 00:21:49,600 --> 00:21:55,280 WE'RE CATWE'RE CAPTURING THE VAE 466 00:21:55,280 --> 00:21:56,120 OF POPULATIONS SO WE'RE CLOSE TO 467 00:21:56,120 --> 00:22:02,880 A TARGET OF MORE LIKE 55% WHITE 468 00:22:02,880 --> 00:22:05,120 AND 45% NON. 469 00:22:05,120 --> 00:22:06,960 OUR AREA OF SHORT FALLS SO FAR 470 00:22:06,960 --> 00:22:09,360 HAS BEEN OUR HISPANIC 471 00:22:09,360 --> 00:22:10,560 POPULATION, LATINO POPULATION IN 472 00:22:10,560 --> 00:22:12,560 PART RELATED TO A DELAYED 473 00:22:12,560 --> 00:22:15,000 ROLLOUT OF OUR TRANSLATION AND 474 00:22:15,000 --> 00:22:21,920 OF SOME OF THE RESEARCH 475 00:22:21,920 --> 00:22:24,280 ELEMENTS. 476 00:22:24,280 --> 00:22:26,440 WE'RE DOING WELL IN THE OTHER 477 00:22:26,440 --> 00:22:27,840 POPULATIONS, AFRICAN AMERICAN, 478 00:22:27,840 --> 00:22:30,200 AMERICAN INDIANS, ASIANS, NATIVE 479 00:22:30,200 --> 00:22:32,160 HAWAIIAN, PACIFIC ISLANDERS, 480 00:22:32,160 --> 00:22:35,720 WE'RE ALMOST EXCEEDING 481 00:22:35,720 --> 00:22:36,720 EXPECTATIONS RELATED TO A 482 00:22:36,720 --> 00:22:40,320 SPECIFIC ROLLOUT IN 483 00:22:40,320 --> 00:22:41,360 INTENTIONALITY AND LEVERAGING 484 00:22:41,360 --> 00:22:42,360 PLATFORMS LIKE THE COMMUNITY 485 00:22:42,360 --> 00:22:46,800 ENGAGE ALLIANCE OR SEEL THAT IS 486 00:22:46,800 --> 00:22:56,120 EFFCEAL RAISINGAWARENESS AND ITD 487 00:22:56,120 --> 00:22:58,040 INTO RECOVER AND ANTICIPATION OF 488 00:22:58,040 --> 00:23:07,440 THE NEED FOR T FOR THAT ENGAGEMD 489 00:23:07,440 --> 00:23:08,400 IS BEARING FRUIT. 490 00:23:08,400 --> 00:23:10,280 THESE ARE JUST A BROAD 491 00:23:10,280 --> 00:23:13,400 HIGH-LEVEL VIEW OF ALL THE COM 492 00:23:13,400 --> 00:23:16,240 PPHONEANTS. 493 00:23:16,240 --> 00:23:18,040 THIS IS A COMPLEX PLATFORM 494 00:23:18,040 --> 00:23:20,400 RELATED TO THE NEED, I BELIEVE, 495 00:23:20,400 --> 00:23:30,880 TO BE CO COMPREHENSIVE AND FIT R 496 00:23:30,880 --> 00:23:32,880 PURPOSE FOR CERTAIN TYPES OF 497 00:23:32,880 --> 00:23:36,680 QUESTIONS DEPTH OR SCALE OR 498 00:23:36,680 --> 00:23:39,600 SAMPLING FRAME OR IN EVALUATION 499 00:23:39,600 --> 00:23:42,200 AND THE TYPE OF INFORMATION THAT 500 00:23:42,200 --> 00:23:44,320 THEY CAN BRING TO BEAR TO EXTEND 501 00:23:44,320 --> 00:23:51,360 THAT UNDERSTANDING OF BRED 502 00:23:51,360 --> 00:23:51,960 STROKES THERE ARE OBSERVATION 503 00:23:51,960 --> 00:23:58,720 VOCAOBSERVATIONALCOHORTS THAT CE 504 00:23:58,720 --> 00:24:00,640 MILLIONS WITH THOSE SORTS OF 505 00:24:00,640 --> 00:24:01,960 DATASETS. 506 00:24:01,960 --> 00:24:03,240 SIMILARLY REV ENROLLING CLINICAL 507 00:24:03,240 --> 00:24:05,440 COHORTS THAT CAN BE AMEEN ABLE 508 00:24:05,440 --> 00:24:08,160 TO CASE CONTROL DESIGNS OR 509 00:24:08,160 --> 00:24:14,920 EFFORTS IN THAT SPACE AS WELL AS 510 00:24:14,920 --> 00:24:20,000 OF LONGITUDINAL AS THEY ARE 511 00:24:20,000 --> 00:24:21,520 ACUTELY EFFECTED EX WHETHER THEY 512 00:24:21,520 --> 00:24:24,200 DEVELOP PAST OR NOT AS WELL AS 513 00:24:24,200 --> 00:24:25,400 COMMUNITY-BASED COHORTS SUCH AS 514 00:24:25,400 --> 00:24:28,800 THE HEART STUDY WHICH GIVES US A 515 00:24:28,800 --> 00:24:31,320 SENSE WITHOUT A PARTICULAR NEW 516 00:24:31,320 --> 00:24:33,560 SAMPLING ASCERTAINMENT WE CAN 517 00:24:33,560 --> 00:24:36,440 SEE WITH THOSE COHORTS LITERALLY 518 00:24:36,440 --> 00:24:39,440 FOLKS IN ALL 50 STATES AND HOW 519 00:24:39,440 --> 00:24:41,280 THEY'RE RESPONDING TO THAT 520 00:24:41,280 --> 00:24:43,880 EXPOSURE AND MORE IMPORTANTLY, 521 00:24:43,880 --> 00:24:46,000 THOSE FOLKS THAT WE HAVE A 522 00:24:46,000 --> 00:24:48,160 TREMENDOUS AMOUNT OF 523 00:24:48,160 --> 00:24:49,800 LONGITUDINAL PRE-COVID DATA ON 524 00:24:49,800 --> 00:24:53,240 AND FOR WHOM WE'RE COMMITTED TO 525 00:24:53,240 --> 00:24:55,520 FOLLOWING THEM TO THE STAGE OF 526 00:24:55,520 --> 00:24:57,360 MORTALITY FOR ANOTHER 10 TO 20 527 00:24:57,360 --> 00:25:00,960 YEARS AND SO, CAPTURING THAT 528 00:25:00,960 --> 00:25:02,240 INFORMATION AS WELL AND THEN THE 529 00:25:02,240 --> 00:25:06,560 OTHER BUCKET, PATHO BIOLOGY, WE 530 00:25:06,560 --> 00:25:09,600 CLEARLY ARE POISED WITH THE BIO 531 00:25:09,600 --> 00:25:11,960 REPOSITORY AND BIOSPECIMEN TO A 532 00:25:11,960 --> 00:25:14,040 RICH SOURCE FOR BIOMARKER 533 00:25:14,040 --> 00:25:20,040 DISCOVERY AND PATH OWE AGAIN I C 534 00:25:20,040 --> 00:25:21,680 STUDIES AND AS WE UNDERSTAND WE 535 00:25:21,680 --> 00:25:26,320 WERE ABLE TO PREDICT, DIAGNOSE, 536 00:25:26,320 --> 00:25:29,720 AND UNDERSTAND A PATHWAY. 537 00:25:29,720 --> 00:25:34,440 WE SHOULD BE POISE TO INTERVENES 538 00:25:34,440 --> 00:25:40,600 IN CLINICAL TRIALS. 539 00:25:40,600 --> 00:25:44,600 SO LET ME TOUCH ON THE 540 00:25:44,600 --> 00:25:46,360 ELECTRONIC HEALTH COHORTS. 541 00:25:46,360 --> 00:25:49,920 WE INDICATED IS A COMPLIMENTARY 542 00:25:49,920 --> 00:25:50,760 STRAND OF INFORMATION AND WE 543 00:25:50,760 --> 00:25:52,200 KNEW FROM THE VERY BEGINNING IT 544 00:25:52,200 --> 00:25:55,600 WAS LIKELY TO YIELD THE QUICKEST 545 00:25:55,600 --> 00:25:57,520 SET OF FINDINGS AND 546 00:25:57,520 --> 00:26:00,280 UNDERSTANDINGS GIVEN THE REPID 547 00:26:00,280 --> 00:26:02,480 TEE YOU CAN CREATE THE COHORTS 548 00:26:02,480 --> 00:26:12,920 AND THAT'S BEEN BORN TRUE. 549 00:26:22,840 --> 00:26:24,960 IT WAS -- WE DON'T THINK THERE 550 00:26:24,960 --> 00:26:26,920 WAS A LOT OF PRECEDENT FOR BUT 551 00:26:26,920 --> 00:26:33,360 THERE WAS AN OPPORTUNITY THAT 552 00:26:33,360 --> 00:26:39,560 THESE AND THERE'S A COVID 553 00:26:39,560 --> 00:26:41,320 COLLABORATIVE AS WELL AS ALL OF 554 00:26:41,320 --> 00:26:43,040 US THAT ALL OF YOU ARE FAMILIAR 555 00:26:43,040 --> 00:26:46,240 WITH AND WE SEE A GREAT 556 00:26:46,240 --> 00:26:47,800 OPPORTUNITY TO DO RESEARCH THAT 557 00:26:47,800 --> 00:26:52,800 LEVERAGES ALL OF THEM TO PCORNET 558 00:26:52,800 --> 00:26:54,800 HAS A ADULT AND PEDIATRIC 559 00:26:54,800 --> 00:26:56,840 COMPONENT THEY CAN PROVIDE 560 00:26:56,840 --> 00:26:58,000 COMPLIMENTARY INFORMATION AND 561 00:26:58,000 --> 00:27:02,120 SYNERGIES BY O BY ENSURING WE LK 562 00:27:02,120 --> 00:27:04,160 ACROSS THESE EHR PLATFORMS. 563 00:27:04,160 --> 00:27:05,400 IT'S SOMETHING THAT WE BELIEVE 564 00:27:05,400 --> 00:27:10,520 ADDS VALUE NOT ONLY TO RECOVER 565 00:27:10,520 --> 00:27:11,960 BUT BEYOND. 566 00:27:11,960 --> 00:27:15,840 AN EARLY THING THEY'VE DONE IS 567 00:27:15,840 --> 00:27:18,200 TO CREATE USING MACHINE LEARNING 568 00:27:18,200 --> 00:27:29,040 A PHENOTYPE OF THE ABILITY O TOY 569 00:27:29,040 --> 00:27:32,040 THAT STILL NEEDS CROSS 570 00:27:32,040 --> 00:27:34,640 VALIDATION AND IN DEED THIS 571 00:27:34,640 --> 00:27:36,480 SLIDE SHOWS YOU ONE OF THE 572 00:27:36,480 --> 00:27:38,680 EFFORTS IN THAT REGARD OF TAKING 573 00:27:38,680 --> 00:27:42,160 THE M.P. LEANING ALGORITHM 574 00:27:42,160 --> 00:27:45,960 DEVELOPED IN 3D FOR PASC THAT 575 00:27:45,960 --> 00:27:47,480 WAS MORE EFFECTIVE THAN THE 576 00:27:47,480 --> 00:27:51,160 CURRENT ICB CODE FOR PA IS SC 577 00:27:51,160 --> 00:27:52,720 AND TO CROSS VALIDATE IT IT IN 578 00:27:52,720 --> 00:27:57,120 ALL OF US AND IN DEED, HAS 579 00:27:57,120 --> 00:27:59,600 REVEALED SOME INTERESTING 580 00:27:59,600 --> 00:28:01,160 FINDINGS AND IS PART OF AN 581 00:28:01,160 --> 00:28:02,520 ONGOING SERIES OF CROSS 582 00:28:02,520 --> 00:28:04,280 VALIDATION STUDIES AND 583 00:28:04,280 --> 00:28:08,560 REFINEMENT OF THOSE ALGORITHMS 584 00:28:08,560 --> 00:28:09,320 THAT WILL IT. 585 00:28:09,320 --> 00:28:16,920 OVER ALL, THIS EHR COHORT SET OF 586 00:28:16,920 --> 00:28:19,880 HAT FORMS HAS BEEN VERY 587 00:28:19,880 --> 00:28:21,560 EFFECTIVE AND PRODUCTIVE IN 588 00:28:21,560 --> 00:28:24,520 GIVING US SOME EARLY LEANINGS 589 00:28:24,520 --> 00:28:27,240 ABOUT THE RELATIONSHIP BETWEEN 590 00:28:27,240 --> 00:28:29,840 THE SEVERITY OF THE ACUTE COVID 591 00:28:29,840 --> 00:28:32,680 ON YOUR INCREASED RISK OF 592 00:28:32,680 --> 00:28:42,720 DEVELOPING PA IS AC IS S THERE'A 593 00:28:42,720 --> 00:28:43,520 RELATIONSHIP WITH SEVERITY OF 594 00:28:43,520 --> 00:28:46,000 THE ACUTE SYNDROME AND 595 00:28:46,000 --> 00:28:48,760 SIMILARLY, IT IT HAS BEEN 596 00:28:48,760 --> 00:28:50,480 EFFECTIVE IN BOTH VALIDATING 597 00:28:50,480 --> 00:28:52,360 EXTENDING FINDINGS IN TERMS OF 598 00:28:52,360 --> 00:28:54,720 CERTAIN RISK GROUPS THAT ARE 599 00:28:54,720 --> 00:28:56,480 LIKELY, BASED ON CO-MORBIDITIES 600 00:28:56,480 --> 00:28:58,600 TO HAVE AN INCREASED OF 601 00:28:58,600 --> 00:29:01,680 DEVELOPING PASC. 602 00:29:01,680 --> 00:29:05,600 IT'S CERTAINLY ONE OF THOSE 603 00:29:05,600 --> 00:29:08,040 EXAMPLES AND AS WELL OTHER 604 00:29:08,040 --> 00:29:10,800 ISSUES OF CO-MORBIDITIES. 605 00:29:10,800 --> 00:29:12,560 MOREOVER, THIS APPROACH YIELDS 606 00:29:12,560 --> 00:29:13,960 CERTAIN ABOUT SUB CLUSTERS AND 607 00:29:13,960 --> 00:29:20,200 SUB PHENOTYPES OF THE PASC 608 00:29:20,200 --> 00:29:22,080 SYNDROME SO THIS IS AN ACTIVE 609 00:29:22,080 --> 00:29:23,600 AREA OF ON GOING LEARNING USING 610 00:29:23,600 --> 00:29:31,520 THIS PLATFORMS. 611 00:29:31,520 --> 00:29:34,960 AGAIN, THIS GIVES YOU A DRILL 612 00:29:34,960 --> 00:29:40,160 DOWN OF THE CAPACITY TO REALLY 613 00:29:40,160 --> 00:29:41,120 FURTHER UNDERSTAND CO MORBID' 614 00:29:41,120 --> 00:29:43,480 AND THEIR INCOMPETENTER ACTION 615 00:29:43,480 --> 00:29:46,800 AND THE DEVELOPMENT OF ONSET 616 00:29:46,800 --> 00:29:47,080 CONTINUES. 617 00:29:47,080 --> 00:29:51,640 TYPE-2 DIABETES MAY PRE DISPOSE 618 00:29:51,640 --> 00:29:53,800 TO PASC BUT EVEN THOSE WHO 619 00:29:53,800 --> 00:29:57,880 DIDN'T HAVE DIABETES A A 620 00:29:57,880 --> 00:29:59,320 PRE-COVID CONDITION MIGHT 621 00:29:59,320 --> 00:30:01,120 DEVELOP ABNORMALITIES FROM 622 00:30:01,120 --> 00:30:03,400 METABOLISM AND DEVELOP A TYPE-2 623 00:30:03,400 --> 00:30:05,000 DIABETES AND SO, THIS IS WHERE 624 00:30:05,000 --> 00:30:07,280 THESE VIRTUAL COHORTS WILL BE 625 00:30:07,280 --> 00:30:10,360 VERY USEFUL IN UNDERSTANDING 626 00:30:10,360 --> 00:30:12,040 THAT NATURAL HISTORY AND THE 627 00:30:12,040 --> 00:30:18,840 EMERGENCE OF ADDITIONAL 628 00:30:18,840 --> 00:30:19,120 CONDITIONS. 629 00:30:19,120 --> 00:30:21,200 MOREOVER, THESE EHR COHORTS CAN 630 00:30:21,200 --> 00:30:24,720 BE USEFUL IN KIND OF PSEUDO 631 00:30:24,720 --> 00:30:27,800 CLINICAL TRIALS OR 'EM 632 00:30:27,800 --> 00:30:39,320 SIMUOR AND THE ASSOCIATIONWITH H 633 00:30:41,080 --> 00:30:44,040 LESS RISK OF PASC COMPARED TO 634 00:30:44,040 --> 00:30:46,040 THOSE WHO ARE UNVACCINATED AND 635 00:30:46,040 --> 00:30:48,960 SO THESE ARE THE TYPE OF 636 00:30:48,960 --> 00:30:50,520 QUESTIONS THAT ARE BEING PURSUED 637 00:30:50,520 --> 00:30:52,920 AS WE UNDERSTAND AND CAN PRE 638 00:30:52,920 --> 00:30:58,440 TEST AT LEAST GET SIGNALS OF 639 00:30:58,440 --> 00:30:59,840 THERAPIES TRIED OR USED IN THE 640 00:30:59,840 --> 00:31:01,520 REAL WORLD AND THEIR 641 00:31:01,520 --> 00:31:05,160 IMPLICATIONS THAT MAY INFORM OUR 642 00:31:05,160 --> 00:31:13,600 CLINICAL TRIALS PLATFORM AND 643 00:31:13,600 --> 00:31:14,960 INTERVENTIONS AND SIMILAR 644 00:31:14,960 --> 00:31:17,600 ANALYSIS ARE UNDERWAY TO 645 00:31:17,600 --> 00:31:18,560 PAXLOVID, FOR EXAMPLE, SO WE 646 00:31:18,560 --> 00:31:20,240 LOOK FORWARD TO THIS PLATFORM 647 00:31:20,240 --> 00:31:22,400 AND WE CONTINUALLY TO HELP US 648 00:31:22,400 --> 00:31:28,480 ADAPT AND LEARN AS WE GO. 649 00:31:28,480 --> 00:31:31,120 TOWARD THAT END, JUST TO A WORD 650 00:31:31,120 --> 00:31:35,120 ABOUT THE PEDIATRIC COMPONENT, 651 00:31:35,120 --> 00:31:37,360 THE CORE NET ADEPT IN HELPING US 652 00:31:37,360 --> 00:31:40,040 TO, AGAIN, I WON'T BELABOR ALL 653 00:31:40,040 --> 00:31:43,000 THE FINDINGS BUT THE NOTION THAT 654 00:31:43,000 --> 00:31:46,680 THE PREVALENCE OR INCIDENTS FOR 655 00:31:46,680 --> 00:31:48,320 PASC MAY BE LESS IN APPROXIMATE 656 00:31:48,320 --> 00:31:49,920 CHILDREN THAN THE ADULTS THAT 657 00:31:49,920 --> 00:31:54,320 YOU OFTEN HEAR ABOUT 15 TO 20% 658 00:31:54,320 --> 00:31:56,920 FIGURE PEDIATRICS APPEARS TO BE 659 00:31:56,920 --> 00:31:58,480 LOWER AND THEN PARTICULARLY IN 660 00:31:58,480 --> 00:32:01,720 THEIR OBSERVATIONS, RELATING IT 661 00:32:01,720 --> 00:32:05,520 TO PARTICULAR SUBGROUPS, OFTEN 662 00:32:05,520 --> 00:32:06,920 WHERE THE SEVERITY OF THE ACUTE 663 00:32:06,920 --> 00:32:08,320 COVID APPEARED TO BE A 664 00:32:08,320 --> 00:32:11,520 PARTICULAR PROMINENT SIGNAL FOR 665 00:32:11,520 --> 00:32:11,760 CHILDREN. 666 00:32:11,760 --> 00:32:15,920 SOF THIS HAS BEEN, AGAIN, A 667 00:32:15,920 --> 00:32:18,040 USEFUL ELEMENT THAT WE THINK 668 00:32:18,040 --> 00:32:19,280 WILL INFORM OUR CHARACTERIZATION 669 00:32:19,280 --> 00:32:22,320 OF THIS OF OF PARTICULAR CLIP 670 00:32:22,320 --> 00:32:27,160 CAL SPECCLINICAL SPECTRUM THAT S 671 00:32:27,160 --> 00:32:29,400 KIDS SINCE THEY'RE NOT LITTLE 672 00:32:29,400 --> 00:32:29,800 ADULTS. 673 00:32:29,800 --> 00:32:31,840 JUST A QUICK DRILL DOWN ON THE 674 00:32:31,840 --> 00:32:36,920 CLINICAL COHORTS. 675 00:32:36,920 --> 00:32:38,480 THIS IS STILL RELATIVELY EARLY 676 00:32:38,480 --> 00:32:40,280 DAYS AND THIS IS WHERE WE'RE 677 00:32:40,280 --> 00:32:41,440 BUILDING THE COHORT AND TRYING 678 00:32:41,440 --> 00:32:44,960 TO STUDY IT IT ALL THE AT THE 679 00:32:44,960 --> 00:32:46,640 SAME TIME AND AS WE INDICATED 680 00:32:46,640 --> 00:32:52,040 HAD TWO COM POPE APARTMENTS TO . 681 00:32:52,040 --> 00:32:53,480 WE FOLLOW PEOPLE WHO ARE COVID 682 00:32:53,480 --> 00:32:55,720 AND TRACK THEM FOR THE 683 00:32:55,720 --> 00:32:57,280 TRAJECTORY OF RECOVERY AND IN 684 00:32:57,280 --> 00:32:59,760 THAT WAY, DELINEATE WHO IS 685 00:32:59,760 --> 00:33:01,840 DEVELOPING PASC WHO DOES NOT IN 686 00:33:01,840 --> 00:33:04,400 A WAY THAT WE CAPTURE OF THE 687 00:33:04,400 --> 00:33:06,880 INFORMATION OF THEIR ACUTE 688 00:33:06,880 --> 00:33:10,120 EXPOSURE AND BIOSPECIMEN TO 689 00:33:10,120 --> 00:33:15,920 UNDERSTAND THAT SUSCEPTIBILITY 690 00:33:15,920 --> 00:33:18,600 AND RISK AND POST ACUTE BOTH OF 691 00:33:18,600 --> 00:33:20,880 THOSE GOT UNDER WAVE AT THE 692 00:33:20,880 --> 00:33:22,400 BEGINNING OF HAD YEAR AND HAVE 693 00:33:22,400 --> 00:33:27,120 MADE INCREDIBLE PROGRESS WITH 694 00:33:27,120 --> 00:33:30,640 THE POST ACUTES BEING FULLY EP 695 00:33:30,640 --> 00:33:33,200 ROLLED IN THE NEXT COUPLE OF 696 00:33:33,200 --> 00:33:39,280 MONTHS WITH NEARLY 8,000 697 00:33:39,280 --> 00:33:41,120 INDIVIDUALS IN THAT GROUP AND I 698 00:33:41,120 --> 00:33:42,240 APOLOGIZE, I THINK THERE'S AN 699 00:33:42,240 --> 00:33:49,360 ERROR ON THE ACUTES. 700 00:33:49,360 --> 00:33:51,960 OVER ALL WE'RE 50% TO THAT 701 00:33:51,960 --> 00:33:54,640 TARGET AND ANTICIPATE IN EARLY 702 00:33:54,640 --> 00:33:56,520 '23, THAT THAT WILL BE COMPLETE 703 00:33:56,520 --> 00:33:57,400 AS WELL. 704 00:33:57,400 --> 00:34:02,440 SO, RAPID PROGRESS IN YELLING 705 00:34:02,440 --> 00:34:05,840 ALREADY IS THE LARGEST, MOST 706 00:34:05,840 --> 00:34:09,400 DIVERSE AND WILL BE THE MOST 707 00:34:09,400 --> 00:34:10,920 COMPREHENSIVELY DEFINED COHORT 708 00:34:10,920 --> 00:34:14,280 OF PA IS SC PATIENTS THAT EXIST 709 00:34:14,280 --> 00:34:18,120 IN THE WORLD TO OUR KNOWLEDGE. 710 00:34:18,120 --> 00:34:21,720 EVEN THOUGH WE'RE STILL BUILDING 711 00:34:21,720 --> 00:34:24,080 THE PLANE WHILE WE FLY IT, WE'RE 712 00:34:24,080 --> 00:34:26,320 TRYING TO LAND WITH SOME RESULTS 713 00:34:26,320 --> 00:34:28,320 EARLY ON AND THEY'RE ALREADY 714 00:34:28,320 --> 00:34:32,080 STARTING TO GIVE US HINTS ABOUT 715 00:34:32,080 --> 00:34:33,800 THAT PERSISTENCE OF SYMPTOMS, 716 00:34:33,800 --> 00:34:37,240 THOSE WHO ARE ACUTELY EFFECT AND 717 00:34:37,240 --> 00:34:38,560 APPEARS IN OUR PRELIMINARY 718 00:34:38,560 --> 00:34:40,200 FINDINGS WITH THAT ABOUT 20% OF 719 00:34:40,200 --> 00:34:42,920 FIGURE FOR THE ADULTS AND 720 00:34:42,920 --> 00:34:45,360 MOREOVER, WE'RE FOLLOWING THAT 721 00:34:45,360 --> 00:34:46,520 TRAJECTORY THREE MONTHS TO SIX 722 00:34:46,520 --> 00:34:49,240 MONTHS AND WE'RE SEEING THOSE 723 00:34:49,240 --> 00:34:50,400 SYMPTOMS AND QUITE FRANKLY IN A 724 00:34:50,400 --> 00:34:52,920 LOT OF THE SURVEYS, ARE PRESENT 725 00:34:52,920 --> 00:34:56,160 AND THE CONTROLS AS WELL AS THE 726 00:34:56,160 --> 00:34:57,600 PATIENTS AND THAT RELATES AGAIN 727 00:34:57,600 --> 00:35:00,840 TO THAT BROAD SPECTRUM OF 728 00:35:00,840 --> 00:35:03,440 SYMPTOMS IN WHICH YOU ASK A 729 00:35:03,440 --> 00:35:04,400 INDIVIDUAL, HAVE YOU HAD A 730 00:35:04,400 --> 00:35:07,680 HEADACHE OR ADULT SLEEPING AND 731 00:35:07,680 --> 00:35:09,680 MANY OF YOU WHO FLEW IN HERE THE 732 00:35:09,680 --> 00:35:11,640 LAST FEW DAYS MIGHT RESPOND YES 733 00:35:11,640 --> 00:35:18,000 WITH THAT AND DES TI SEEING HOWT 734 00:35:18,000 --> 00:35:19,520 CHANGES OVER TIME. 735 00:35:19,520 --> 00:35:21,320 AND SO, THESE ARE PROMISING 736 00:35:21,320 --> 00:35:23,080 RESULTS, TELLING US ALREADY 737 00:35:23,080 --> 00:35:24,280 ABOUT THE NUMBERS OF SYMPTOMS 738 00:35:24,280 --> 00:35:26,040 AND THE CLUSTERING OF SYMPTOMS 739 00:35:26,040 --> 00:35:28,280 AND WE THINK IT WILL BE 740 00:35:28,280 --> 00:35:29,680 IMPORTANT IN THE CLINICAL 741 00:35:29,680 --> 00:35:30,080 SPECTRUM. 742 00:35:30,080 --> 00:35:32,360 NEXT SLIDE, PLEASE. 743 00:35:32,360 --> 00:35:38,280 SO SIMILARLY, MAKING PROGRESS, 744 00:35:38,280 --> 00:35:40,000 ALBEIT IT AT A DIFFERENT SPACE 745 00:35:40,000 --> 00:35:44,880 IN THE PEDIATRICS IT LAGGED 746 00:35:44,880 --> 00:35:47,400 BEHIND FOR JUDICIOUSNESS ABOUT 747 00:35:47,400 --> 00:35:48,680 EXPOSURES TO CHILDREN, 748 00:35:48,680 --> 00:35:50,160 VULNERABLE POPULATIONS EX THE 749 00:35:50,160 --> 00:35:52,440 PROTOCOLS PARTICULARLY THE MORE 750 00:35:52,440 --> 00:35:53,880 IN-DEPTH PROTOCOLS THAT WERE 751 00:35:53,880 --> 00:35:55,920 THOUGHTFULLY DONE SO IT'S 752 00:35:55,920 --> 00:36:00,960 GETTING IT WAY AND BEGINNING IN 753 00:36:00,960 --> 00:36:02,760 MAY ONLY BEING UP FOR SEVERAL 754 00:36:02,760 --> 00:36:06,160 MONTHS, AGAIN, ACCRUAL HAS HAD 755 00:36:06,160 --> 00:36:08,280 SPEED BUMPING BUT IT UNDERWAY 756 00:36:08,280 --> 00:36:13,360 AND ON PACE. 757 00:36:13,360 --> 00:36:15,880 IN DEED, UP WITH OF THE SUB 758 00:36:15,880 --> 00:36:18,400 ELEMENTS OF THE PEDIATRIC 759 00:36:18,400 --> 00:36:20,640 ELEMENTS OF RECOVER, INVOLVES A 760 00:36:20,640 --> 00:36:23,040 PARTICULAR FOCUS ON A 761 00:36:23,040 --> 00:36:26,440 DISTINCTIVE TYPE OF POST ACUTE 762 00:36:26,440 --> 00:36:28,480 SEQUELAE OF SARS-CoV-2 763 00:36:28,480 --> 00:36:29,240 INFECTION. 764 00:36:29,240 --> 00:36:32,520 THE MULTI SYSTEM INFLAMMATORY 765 00:36:32,520 --> 00:36:35,720 SYNDROME IN CHILDREN IN WHICH 766 00:36:35,720 --> 00:36:38,680 THAT EMERGED RELATIVELY EARLY ON 767 00:36:38,680 --> 00:36:41,560 IN '20 AND THERE'S A STUDY MUSIC 768 00:36:41,560 --> 00:36:44,160 THAT HAS NOW BECOME FOLDED UNDER 769 00:36:44,160 --> 00:36:46,760 RECOVER SINCE IT HAS THIS 770 00:36:46,760 --> 00:36:49,320 PARTICULAR FORM OF PA IS SC, IF 771 00:36:49,320 --> 00:36:53,920 YOU WILL, AND WITH THAT ARTICLEY 772 00:36:53,920 --> 00:36:54,760 LEANING, ONE OF THE QUESTIONS 773 00:36:54,760 --> 00:36:57,720 THAT BEGAN OR EMERGED EARLY ON 774 00:36:57,720 --> 00:36:59,960 WAS IF THESE CHILDREN, WHO WERE 775 00:36:59,960 --> 00:37:02,160 OFTEN ASYMPTOMATIC OR ONLY 776 00:37:02,160 --> 00:37:03,440 MILDLY SYMPTOMATIC TO THEIR 777 00:37:03,440 --> 00:37:06,520 FIRST EXPOSURE TO THE VIRUS SOME 778 00:37:06,520 --> 00:37:08,080 EIGHT TO 12 WEEKS LATER WE HAVE 779 00:37:08,080 --> 00:37:11,800 THIS INCREDIBLE DIFFICULT 780 00:37:11,800 --> 00:37:14,080 SYNDROME AND MADE THEM VERY SICK 781 00:37:14,080 --> 00:37:15,400 INVOLVING ICU ADMISSION. 782 00:37:15,400 --> 00:37:18,600 IF IF THE VIRUS IT TRIGGER THAT 783 00:37:18,600 --> 00:37:19,920 DELAYED RESPONSE, HOW WOULD 784 00:37:19,920 --> 00:37:21,960 THESE KIDS RESPOND IF WE GAVE 785 00:37:21,960 --> 00:37:23,520 THEM A VACCINE AND AGAIN GAVE 786 00:37:23,520 --> 00:37:25,160 THEM EXPOSURE TO THE SPIKE 787 00:37:25,160 --> 00:37:26,320 PROTEIN SO IT'S A QUESTION OF 788 00:37:26,320 --> 00:37:29,400 WHETHER THAT WOULD BE IN DEED 789 00:37:29,400 --> 00:37:33,920 SAFE AND IN DEED THE STUDIES 790 00:37:33,920 --> 00:37:36,840 SUGGEST THAT WITH RELIEF, YES, 791 00:37:36,840 --> 00:37:38,120 THESE CHILDREN COULD BE 792 00:37:38,120 --> 00:37:45,440 VACCINATED SAFELY. 793 00:37:45,440 --> 00:37:47,080 JUST TO GIVE YOU A DESCRIPTION 794 00:37:47,080 --> 00:37:51,320 THAT THESE ARE LEVERAGING 795 00:37:51,320 --> 00:37:53,000 BASICALLY A COHORT OF COHORTS. 796 00:37:53,000 --> 00:37:55,720 MANY COHORTS THAT HAVE BEEN 797 00:37:55,720 --> 00:37:57,960 COMMUNITY-BASED LONGITUDINAL 798 00:37:57,960 --> 00:38:03,880 CALLED C4R INVOLVING FRAMING NO 799 00:38:03,880 --> 00:38:05,800 MASKS, REGARDS, ET CETERA, AND 800 00:38:05,800 --> 00:38:09,920 AS WELL AS ABCD AND ENGAGING 801 00:38:09,920 --> 00:38:12,160 THOSE INVESTIGATORS IN THIS 802 00:38:12,160 --> 00:38:14,760 PROCESS OF RECOVERY WHERE THEY 803 00:38:14,760 --> 00:38:17,240 CAN DO SURVEILLANCE AND MUCH 804 00:38:17,240 --> 00:38:20,080 COLLECT BIOSPECIMENS AND THEY'RE 805 00:38:20,080 --> 00:38:23,520 LINKED ALREADY TO LONGITUDINAL 806 00:38:23,520 --> 00:38:24,720 STUDIES WITH PRE-COVID 807 00:38:24,720 --> 00:38:26,040 INFORMATION AND THE ABILITY TO 808 00:38:26,040 --> 00:38:27,720 TRACK THOSE TRAJECTORIES OVER 809 00:38:27,720 --> 00:38:30,280 TIME SO WE'RE EXCITED ABOUT 810 00:38:30,280 --> 00:38:32,600 THESE EFFORTS IN WHICH FOR THE 811 00:38:32,600 --> 00:38:34,360 ADULT THEY'VE ALREADY STARTED TO 812 00:38:34,360 --> 00:38:36,080 CHARACTERIZE THOSE WHO HAVE HAD 813 00:38:36,080 --> 00:38:40,000 COVID EX THEY'VE BEEN DOING 814 00:38:40,000 --> 00:38:40,720 SURVEILLANCE AND THEY'VE HAD 815 00:38:40,720 --> 00:38:43,600 SOME SENSE OF CHARACTERIZATION 816 00:38:43,600 --> 00:38:46,280 OF THE VARIANCE AND WHAT OCCURS 817 00:38:46,280 --> 00:38:49,720 OVER TIME AND THIS SHOULD BE 818 00:38:49,720 --> 00:38:50,560 USEFUL INFORMATION AS WELL AS 819 00:38:50,560 --> 00:38:52,280 ALREADY STARTING TO IDENTIFY 820 00:38:52,280 --> 00:38:54,040 INDIVIDUALS WITH PERSISTENT 821 00:38:54,040 --> 00:38:55,760 SYSTEMS POTENTIALLY CONSISTENT 822 00:38:55,760 --> 00:38:59,000 WITH PASC SO AGAIN, I'M EXCITED 823 00:38:59,000 --> 00:39:03,840 ABOUT THIS SYNERGISTIC PIECE OF 824 00:39:03,840 --> 00:39:04,240 INFORMATION. 825 00:39:04,240 --> 00:39:05,400 NEXT SLIDE, PLEASE. 826 00:39:05,400 --> 00:39:08,480 PATHO BIOLOGY JUST TO GIVE YOU A 827 00:39:08,480 --> 00:39:16,480 FEEL, THAT AGAIN LAST YEAR, THAT 828 00:39:16,480 --> 00:39:19,200 ARE NOW STIMULATING INVESTIGATOR 829 00:39:19,200 --> 00:39:21,280 INITIATED STUDIES IN A VARIETY 830 00:39:21,280 --> 00:39:22,960 OF DOMAINS THAT ARE KIND OF 831 00:39:22,960 --> 00:39:26,040 LISTED THERE ON THE RIGHT AND 832 00:39:26,040 --> 00:39:27,440 WHICH INVESTIGATORS ARE STUDYING 833 00:39:27,440 --> 00:39:29,800 THE CONSEQUENCE OF ACUTE 834 00:39:29,800 --> 00:39:32,040 INFECTION AND DEVELOPING ANIMAL 835 00:39:32,040 --> 00:39:34,520 MODELS AND EXPLORING ALL SORTS 836 00:39:34,520 --> 00:39:36,560 OF 'EM UNION DYSFUNCTION STUDIES 837 00:39:36,560 --> 00:39:38,680 AND BOTH IN ANIMAL MODELS AS 838 00:39:38,680 --> 00:39:41,000 WELL AS RECOVER SPECIMENS AND 839 00:39:41,000 --> 00:39:42,480 AGAIN THE SLIDE GIVES YOU A 840 00:39:42,480 --> 00:39:43,920 SENSE OF THE BREADTH OF 841 00:39:43,920 --> 00:39:45,560 ACTIVITIES AND THE BREADTH OF SO 842 00:39:45,560 --> 00:39:47,280 I SYSTEMS AND THE BREADTH OF 843 00:39:47,280 --> 00:39:49,680 ICs QUITE FRANKLY THAT THESE 844 00:39:49,680 --> 00:39:55,840 STUDIES ARE BEING AWARDEDFUL 845 00:39:55,840 --> 00:39:56,920 WILLING AND FOLLOWED. 846 00:39:56,920 --> 00:39:58,560 I WISH I COULD TELL YOU MORE 847 00:39:58,560 --> 00:40:00,000 ABOUT THOSE BUT THOSE ARE 848 00:40:00,000 --> 00:40:00,280 UNDERWAY. 849 00:40:00,280 --> 00:40:03,880 JUST TO GIVE YOU A FLAVOR, MANY 850 00:40:03,880 --> 00:40:07,080 OF THESE AWARDEES HAD 851 00:40:07,080 --> 00:40:10,640 PRELIMINARY DATA BASED ON SMALL 852 00:40:10,640 --> 00:40:14,480 STUDIES TO TEST SOME OF THESE 853 00:40:14,480 --> 00:40:20,720 HYPOTHESIS BY AUTO ANTIBODIES, 854 00:40:20,720 --> 00:40:25,920 ET CETERA, AND THIS IS JUST ONE 855 00:40:25,920 --> 00:40:28,560 RECENT PAPER THAT IS I WILL LUS 856 00:40:28,560 --> 00:40:30,560 TRA TIVE OF THE STUDIES THAT 857 00:40:30,560 --> 00:40:34,240 HAVE BEEN INITIATED ALL SMALL 858 00:40:34,240 --> 00:40:36,040 SCALE AND THE SIDE INVESTIGATORS 859 00:40:36,040 --> 00:40:38,640 IN RECOVER WHO THEM HAVE THE 860 00:40:38,640 --> 00:40:40,960 OPPORTUNITY TO NOW EXTEND, 861 00:40:40,960 --> 00:40:42,400 EVALUATE AND BRING THOSE TO 862 00:40:42,400 --> 00:40:44,640 SCALE AND ALREADY YOU CAN START 863 00:40:44,640 --> 00:40:47,480 TO SEE PATTERNS EMERGING AND 864 00:40:47,480 --> 00:40:51,080 DISSECT OUT CLUSTERS OF 865 00:40:51,080 --> 00:40:54,000 SYMPTOMS, AUTO ANTIBODIES AND 866 00:40:54,000 --> 00:40:56,120 CYTOKINES SO WE CAN SEE A 867 00:40:56,120 --> 00:40:57,320 PATHWAY WHERE WE'LL GET INSIGHTS 868 00:40:57,320 --> 00:41:03,400 IN THE PATHOGENESIS. 869 00:41:03,400 --> 00:41:06,760 SIMILARLY, IN SOME WAYS, MISC 870 00:41:06,760 --> 00:41:09,960 MIGHT PROVIDE US WITH AID 871 00:41:09,960 --> 00:41:11,480 FORERUNNER EXEMPLAR GIVEN THAT 872 00:41:11,480 --> 00:41:13,400 THOSE STUDIES HAVE BEEN MORE 873 00:41:13,400 --> 00:41:15,400 MATURE AND SINCE THEY STARTED 874 00:41:15,400 --> 00:41:19,640 EARLIER AND IN IN WAYS ALSO THE 875 00:41:19,640 --> 00:41:22,880 POTENTIAL FOR UNDERSTANDING PASC 876 00:41:22,880 --> 00:41:26,200 IN INFORMING OTHER PUNITIVE POST 877 00:41:26,200 --> 00:41:27,760 VIRAL SYNDROMES AND IN THIS 878 00:41:27,760 --> 00:41:29,080 CASE, IT WAS RECOGNIZED 879 00:41:29,080 --> 00:41:31,520 RELATIVELY EARTH ON THAT MISSY 880 00:41:31,520 --> 00:41:33,760 HAD SIMILAR CHARACTERISTICS 881 00:41:33,760 --> 00:41:35,880 CLINICALLY OF KAWASAKI'S DISEASE 882 00:41:35,880 --> 00:41:38,200 WHICH HAS BEEN STUDIED FOR 883 00:41:38,200 --> 00:41:39,760 DECADES WITHOUT HAVING A CLEAR 884 00:41:39,760 --> 00:41:45,720 UNDERSTANUNDERSTANDING OF ITS 885 00:41:45,720 --> 00:41:46,760 IDEOLOGICALLY PATHWAYS AND 886 00:41:46,760 --> 00:41:48,920 PRESUMED TO BE A POST VIRAL 887 00:41:48,920 --> 00:41:50,680 SYNDROME AND IN DEED CUT TO GO 888 00:41:50,680 --> 00:41:53,320 THE CHASE, A NUMBER OF STUDIES 889 00:41:53,320 --> 00:41:55,600 HAVE BEEN DONE NOW THAT HAVE 890 00:41:55,600 --> 00:41:56,880 IDENTIFIED SUBTLE, DIFFERENCES 891 00:41:56,880 --> 00:41:59,080 AND CLINICAL PRESENTATIONS AND 892 00:41:59,080 --> 00:42:02,120 NOW LAYERING ON LIKE IT OR A 893 00:42:02,120 --> 00:42:04,520 DEEP PHENOTYPING AND STARTING TO 894 00:42:04,520 --> 00:42:08,480 SEE CLUSTERS THAT DISTINGUISH 895 00:42:08,480 --> 00:42:15,920 MISS-C FROM KAWASAKI FROM COVID 896 00:42:15,920 --> 00:42:17,320 AND THESE ARE DELINEATIONS WE 897 00:42:17,320 --> 00:42:19,120 CAN ANTICIPATE AND WE HOPE WE 898 00:42:19,120 --> 00:42:22,640 CAN RECOVER WITH PASC AND POST 899 00:42:22,640 --> 00:42:27,320 VIRAL SYNDROME. 900 00:42:27,320 --> 00:42:29,480 TOWARD THAT END, IT IS STARTING 901 00:42:29,480 --> 00:42:34,800 TO REVEAL AND REAL MECHANISTIC 902 00:42:34,800 --> 00:42:37,440 HYPOTHESIS UNDERLINE MIS-C AND 903 00:42:37,440 --> 00:42:39,920 THIS IS WHAT WE'RE HOPING WILL 904 00:42:39,920 --> 00:42:41,840 BE THE TRAJECTORY OF RECOVER AS 905 00:42:41,840 --> 00:42:43,160 WE MOVE FORWARD AND ENGAGE IN 906 00:42:43,160 --> 00:42:46,080 SOME OF THESE PATHO BIOLOGICAL 907 00:42:46,080 --> 00:42:47,600 STUDIES IN DEPTH AT SCALE WITH 908 00:42:47,600 --> 00:42:51,160 THE PRECISION AND COMMONALITY OF 909 00:42:51,160 --> 00:42:55,520 CHARACTERIZATION ON THE RECOVER 910 00:42:55,520 --> 00:42:55,880 PLATFORM. 911 00:42:55,880 --> 00:42:59,400 NEXT SLIDE IS A WRAP-UP HERE. 912 00:42:59,400 --> 00:43:01,440 WITH FINAL SET OF SLIDES RELATED 913 00:43:01,440 --> 00:43:04,760 TO CLINICAL TRIALS AND JUST 914 00:43:04,760 --> 00:43:09,120 WANTED TO GIVE YOU, AGAIN, A 915 00:43:09,120 --> 00:43:12,560 REITERATION OF THAT PRINCIPAL OF 916 00:43:12,560 --> 00:43:13,800 STRIVING TO BE PATIENT CENTERED 917 00:43:13,800 --> 00:43:16,120 AND PART OF INITIATING THE 918 00:43:16,120 --> 00:43:18,840 CLINICAL TRIAL PLATFORMS, WAS TO 919 00:43:18,840 --> 00:43:20,840 TAP INTO DIVERSE PERSPECTIVES 920 00:43:20,840 --> 00:43:24,200 AND EXPERTISE BOTH LIVED 921 00:43:24,200 --> 00:43:27,040 EXPERIENCE AS WELL AS DISCIPLINE 922 00:43:27,040 --> 00:43:29,440 EXPERTISE AND VARIETY OF 923 00:43:29,440 --> 00:43:31,440 STAKEHOLDERS, WHETHER NON-PROFIT 924 00:43:31,440 --> 00:43:33,560 PATIENT ADVOCACY AND OR THE 925 00:43:33,560 --> 00:43:36,080 PRIVATE SECTOR AND ALL OF THOSE 926 00:43:36,080 --> 00:43:38,080 PLAYERS AND INPUTS ARE CRITICAL 927 00:43:38,080 --> 00:43:41,280 TO DEFINING WHAT SHOULD BE THE 928 00:43:41,280 --> 00:43:51,760 PRIORITIES OF THE CLIP TAL TRI L 929 00:43:51,760 --> 00:43:52,840 PORTFOLIO AND I WANT TO 930 00:43:52,840 --> 00:43:56,200 HIGHLIGHT THE PATIENT COMPONENT 931 00:43:56,200 --> 00:43:57,880 HELPING US DEFINE SYMPTOMS 932 00:43:57,880 --> 00:43:58,920 MEANINGFUL TO PATIENTS TO BE 933 00:43:58,920 --> 00:43:59,320 RELIEVED. 934 00:43:59,320 --> 00:44:00,680 THERE ARE A LOT OF THINGS THAT 935 00:44:00,680 --> 00:44:02,720 SCIENTISTS WOULD LIKE TO MEASURE 936 00:44:02,720 --> 00:44:05,080 THAT COULD SHOW A P VALUE BUT IF 937 00:44:05,080 --> 00:44:06,520 THAT'S NOT MEANINGFUL TO 938 00:44:06,520 --> 00:44:08,440 PATIENTS WHO ARE SUFFERING, THEN 939 00:44:08,440 --> 00:44:10,720 WE'VE NOT HIT THE MARK AND SO 940 00:44:10,720 --> 00:44:12,680 THAT IS WHY THOSE PERSPECTIVES 941 00:44:12,680 --> 00:44:14,360 WERE IMPORTANT WITH FOCUS 942 00:44:14,360 --> 00:44:17,240 GROUPS, SURVEYS OR THEIR ACTIVE 943 00:44:17,240 --> 00:44:19,320 INVOLVEMENT IN THE PROTOCOL 944 00:44:19,320 --> 00:44:20,280 DEVELOPMENT AND PATIENTS HAVE 945 00:44:20,280 --> 00:44:24,680 BEEN INVOLVED IN ALL THOSE 946 00:44:24,680 --> 00:44:24,960 COMPONENTS. 947 00:44:24,960 --> 00:44:30,800 SO.SO, THIS GIVES YOU OUR CURRET 948 00:44:30,800 --> 00:44:32,120 FRAMEWORK WHERE WE'RE ABOUT TO 949 00:44:32,120 --> 00:44:36,760 ROLLOUT A SERIES OF ADAPTIVE 950 00:44:36,760 --> 00:44:38,040 MASTER PROTOCOLS ACROSS THESE 951 00:44:38,040 --> 00:44:39,520 FIVE BUCKETS AND DOMAINS. 952 00:44:39,520 --> 00:44:42,800 YOU SEE THE FIRST ONE RELATED TO 953 00:44:42,800 --> 00:44:45,640 BIO PERSISTENCE, REACTIVATION 954 00:44:45,640 --> 00:44:48,520 AND 'EM UNION DISREGULATION AND 955 00:44:48,520 --> 00:44:50,320 ANOTHER ONE CLASS TORE AROUND 956 00:44:50,320 --> 00:45:00,840 THE ELEMENTS OF EX AUTO NO NOM I 957 00:45:04,920 --> 00:45:12,840 AND -- AND THESEREPEAT EVEN SILY 958 00:45:12,840 --> 00:45:16,080 MAY SHARE COMMON INSTRUMENTS AND 959 00:45:16,080 --> 00:45:16,680 RECOGNIZING THE OVERLAPPING 960 00:45:16,680 --> 00:45:18,320 NATURE OF IN OF THESE SYMPTOMS 961 00:45:18,320 --> 00:45:24,240 IN THE HOLISTIC PATIENT AND SO 962 00:45:24,240 --> 00:45:26,400 ONE OF THE STRENGTHS, UNLIKE 963 00:45:26,400 --> 00:45:28,360 WHAT WE DID WITH ACTIVE IS EACH 964 00:45:28,360 --> 00:45:30,280 OF THE PLATFORMS COULD HAVE 965 00:45:30,280 --> 00:45:32,080 CONTROLS THAT INFORMED EACH 966 00:45:32,080 --> 00:45:33,720 OTHER AND THAT AGAIN WITH COMMON 967 00:45:33,720 --> 00:45:35,840 DATA ELEMENTS, IN A CORE FOR 968 00:45:35,840 --> 00:45:38,920 MANY OF THEM, WE HOPE TO LEARN 969 00:45:38,920 --> 00:45:40,480 FASTER AND BETTER FROM THE 970 00:45:40,480 --> 00:45:42,160 CLINICAL TRIALS TO GET SHOTS ON 971 00:45:42,160 --> 00:45:43,920 GOAL TO SEE WHAT IS WORKING AND 972 00:45:43,920 --> 00:45:45,720 WHAT'S NOT TO RELIEF SUFFERING 973 00:45:45,720 --> 00:45:48,440 AS SOON AS WE POSSIBLY CAN WITH 974 00:45:48,440 --> 00:45:51,600 HIGH-THROUGHPUT AND SPEED AND 975 00:45:51,600 --> 00:45:53,520 SPEED AT THE -- BUT A PACE AT 976 00:45:53,520 --> 00:45:55,920 THE SPEED OF TRUST AND BOTH THE 977 00:45:55,920 --> 00:45:57,800 TRUST OF THE PATIENTS WHO ARE 978 00:45:57,800 --> 00:45:59,240 ALONGSIDE US AND HELPING TO 979 00:45:59,240 --> 00:46:00,920 CREATE THIS AS WELL AS THE 980 00:46:00,920 --> 00:46:03,480 TRUSTWORTHINESS OF OF THE DATA. 981 00:46:03,480 --> 00:46:04,920 WE THINK IT'S CRITICALLY 982 00:46:04,920 --> 00:46:06,840 IMPORTANT THAT WE GET THE RIGHT 983 00:46:06,840 --> 00:46:08,520 ANSWER, NOT JUST THE QUICKEST 984 00:46:08,520 --> 00:46:08,760 ANSWER. 985 00:46:08,760 --> 00:46:09,800 SO THAT'S THE PACE THAT WE'RE 986 00:46:09,800 --> 00:46:12,840 MOVING WITH A SENSE OF URGENCY 987 00:46:12,840 --> 00:46:15,440 TO RELIEF THE SUFFERING OF THESE 988 00:46:15,440 --> 00:46:22,480 PATIENTS WITH PA IASC. 989 00:46:22,480 --> 00:46:25,200 I THINK RECOVERING TEAMS BOTH 990 00:46:25,200 --> 00:46:28,520 THOSE AND EXTRAMURAL 991 00:46:28,520 --> 00:46:30,240 COMMUNITIES, PATIENTS, PROVIDERS 992 00:46:30,240 --> 00:46:33,520 HAVE COME TOGETHER INCREDIBLY TO 993 00:46:33,520 --> 00:46:35,760 TACKLE SOMETHING OF COMPLEXITY 994 00:46:35,760 --> 00:46:41,600 WITH A LOT OF UNKNOWNS AND HAVE 995 00:46:41,600 --> 00:46:43,040 DONE SO WITH A LOT OF FOLKS 996 00:46:43,040 --> 00:46:47,920 LEANING IN HEAVILY AND I BELIEVE 997 00:46:47,920 --> 00:46:51,760 I HAVE CREATED A COHORT OF SCALE 998 00:46:51,760 --> 00:46:56,840 AND SIZE OF 11,000 IN A YEAR 999 00:46:56,840 --> 00:46:59,080 FASTER THAN ALMOST ANY OTHER NIH 1000 00:46:59,080 --> 00:47:02,160 STUDY I'M AWARE OF OF THIS 1001 00:47:02,160 --> 00:47:04,680 COMPLEXITY AND 1002 00:47:04,680 --> 00:47:15,840 MULTI-DISCIPLMULTI-DISCIPLINARYO 1003 00:47:16,200 --> 00:47:18,280 I THINK WE'RE WELL POISED TO, 1004 00:47:18,280 --> 00:47:20,160 EVEN BECAUSE IT'S SUCH ROBUST 1005 00:47:20,160 --> 00:47:22,840 SIZE, TO BEGIN LEARNING FROM 1006 00:47:22,840 --> 00:47:24,040 APPAL SIS BECAUSE IT'S ALREADY 1007 00:47:24,040 --> 00:47:25,680 THE LARGEST ONE AND WE LOOK 1008 00:47:25,680 --> 00:47:27,840 FORWARD TO SOME OF THAT DATA IN 1009 00:47:27,840 --> 00:47:32,680 THE FIRST COUPLE OF QUARTERS OF 1010 00:47:32,680 --> 00:47:36,040 2023 WITH HAVING BUILT THE PLAIN 1011 00:47:36,040 --> 00:47:37,920 AND GENERAL DATA ALONG THE WAY. 1012 00:47:37,920 --> 00:47:40,120 SO SIMILARLY WE LOOK FORWARD TO 1013 00:47:40,120 --> 00:47:42,240 CROSS VALIDATION STUDIES AND THE 1014 00:47:42,240 --> 00:47:44,480 ELECTRIC TROPIC HEALTH RECORDS 1015 00:47:44,480 --> 00:47:52,000 AND OTHER CLINICAL TRIAL EMULATE 1016 00:47:52,000 --> 00:47:55,120 AND INTEGRATING SENSOR DATA AND 1017 00:47:55,120 --> 00:47:56,880 THE MOBILE DIGITAL PLATFORM AND 1018 00:47:56,880 --> 00:48:02,920 TO REALLY CAPTURE THAT 24/7, 1019 00:48:02,920 --> 00:48:07,280 3656 PATIENTS OF PASC AND 1020 00:48:07,280 --> 00:48:10,120 FINALLY WE'RE VERY EXCITED ABOUT 1021 00:48:10,120 --> 00:48:13,680 THE MANY STUDIES OF THE THAT 1022 00:48:13,680 --> 00:48:15,560 WE'RE CONFIDENT AND WE'LL START 1023 00:48:15,560 --> 00:48:18,560 TO PURSUE THE HYPOTHESIS 1024 00:48:18,560 --> 00:48:23,440 OUTLINED BEFORE IN DEED WE'VE 1025 00:48:23,440 --> 00:48:29,560 BEEN I AM TRYIINTRIGUED ON DATAE 1026 00:48:29,560 --> 00:48:31,240 PROTEIN AND WE'RE POISED TO 1027 00:48:31,240 --> 00:48:32,840 START TO VALIDATE SOME OF THOSE 1028 00:48:32,840 --> 00:48:34,280 STUD'S AND MANY OF THEM WERE 1029 00:48:34,280 --> 00:48:37,880 DONE WITH FEWER THAN 100 OR AT 1030 00:48:37,880 --> 00:48:38,680 MOST 200 INDIVIDUALS AND WE'RE 1031 00:48:38,680 --> 00:48:41,480 NOW ABLE TO DO THAT AT QUITE A 1032 00:48:41,480 --> 00:48:43,560 GREATER SCALE AND 1033 00:48:43,560 --> 00:48:44,440 COMPREHENSIVENESS AND I LOOK 1034 00:48:44,440 --> 00:48:46,120 FORWARD TO THAT DATA AGAIN IN 1035 00:48:46,120 --> 00:48:48,480 THE NEXT SIX MONTHS OR SO. 1036 00:48:48,480 --> 00:48:51,080 AND FINALLY, THE CLINICAL TRIAL 1037 00:48:51,080 --> 00:48:53,160 PORTFOLIO WE OUTLINED AGAIN, 1038 00:48:53,160 --> 00:48:54,480 WE'RE ANTICIPATING THE GROUPS 1039 00:48:54,480 --> 00:48:56,400 HAVE BEEN HARD AT WORK AND 1040 00:48:56,400 --> 00:48:58,400 DEVELOPING THOSE PROTOCOLS AND 1041 00:48:58,400 --> 00:49:01,000 PROTOCOLS TAKE REVIEW AND 1042 00:49:01,000 --> 00:49:03,360 ACTIVATION AND ET CETERA BUT WE 1043 00:49:03,360 --> 00:49:07,040 ANTICIPATE A STAGGERED ROLLOUT 1044 00:49:07,040 --> 00:49:17,480 IN Q1, Q 2 OF 2023. 1045 00:49:20,120 --> 00:49:22,360 >>THANK YOU FOR THE CHALLENGE 1046 00:49:22,360 --> 00:49:22,640 AND POPS. 1047 00:49:22,640 --> 00:49:30,080 WE HAVE A COUPLE HANDS UP HERE. 1048 00:49:30,080 --> 00:49:31,920 >>THANK YOU. 1049 00:49:31,920 --> 00:49:34,320 WHETHER IT'S THE SCALE AND SCOPE 1050 00:49:34,320 --> 00:49:36,240 OF THIS PROGRAM AMAZING. 1051 00:49:36,240 --> 00:49:37,640 I WANT TO SPEAK PARTICULARLY TO 1052 00:49:37,640 --> 00:49:39,800 LOCATION ENGAGEMENT AND RECOVER 1053 00:49:39,800 --> 00:49:45,360 HAS ON THE WEBSITE AN AMBITIOUS 1054 00:49:45,360 --> 00:49:47,640 COMMUNITY STRATEGY AND SOME THE 1055 00:49:47,640 --> 00:49:48,720 PUBLIC FACING INFORMATION ABOUT 1056 00:49:48,720 --> 00:49:50,480 THE RECOVER PROGRAM AND FROM 1057 00:49:50,480 --> 00:49:51,800 DISCUSSIONS THAT I'VE HAD WITH 1058 00:49:51,800 --> 00:49:52,920 SEVERAL PATIENTS RECOVERING ON 1059 00:49:52,920 --> 00:49:54,480 RECOVER WORKING GROUPS, I 1060 00:49:54,480 --> 00:49:57,000 BELIEVE THAT IMPLEMENTATION IS 1061 00:49:57,000 --> 00:49:58,960 FALLING SHORT AND IN PARTICULAR, 1062 00:49:58,960 --> 00:50:00,440 ALTHOUGH PATIENTS HAVE INPUT 1063 00:50:00,440 --> 00:50:04,160 INTO DECISIONS, EQUAL STATUS IN 1064 00:50:04,160 --> 00:50:05,120 DECISION-MAKING THAT WOULD BE 1065 00:50:05,120 --> 00:50:07,200 EXPECTED WHEN USING WORDS LIKE 1066 00:50:07,200 --> 00:50:13,800 CO CO-DESIGN AND CO-DEFINE. 1067 00:50:13,800 --> 00:50:14,920 THERE'S ALWAYS LEARNING AND 1068 00:50:14,920 --> 00:50:16,680 BUMPS ALONG THE WAY BUT I WOULD 1069 00:50:16,680 --> 00:50:19,200 HOPE OUR TRANSPARENCY IN THE 1070 00:50:19,200 --> 00:50:20,960 PROCESSES AND IN STAGE 5 OF THE 1071 00:50:20,960 --> 00:50:23,560 STRATEGY, IT SAYS, THE GOAL IS 1072 00:50:23,560 --> 00:50:25,520 TO REFINE AND EXPAND ENGAGEMENT 1073 00:50:25,520 --> 00:50:27,600 APPROACHES THROUGHOUT THE LIFE 1074 00:50:27,600 --> 00:50:29,160 OF THE INITIATIVE SO TO BE THAT 1075 00:50:29,160 --> 00:50:30,760 MODEL FOR PATIENT ENGAGEMENT 1076 00:50:30,760 --> 00:50:32,400 THAT YOU SPOKE OF Dr. GIBBONS, 1077 00:50:32,400 --> 00:50:35,480 I WOULD LIKE TO REQUEST A MORE 1078 00:50:35,480 --> 00:50:36,800 EXCLUSIVE LEARNING PLAN THAT IS 1079 00:50:36,800 --> 00:50:39,000 MORE TRANSPARENT ABOUT PATIENT I 1080 00:50:39,000 --> 00:50:40,160 AM CONCLUSION IN GOVERNANCE AND 1081 00:50:40,160 --> 00:50:41,840 THAT THE DECISIONS MADE AND THE 1082 00:50:41,840 --> 00:50:43,960 PATIENT CONTRIBUTIONS TO THOSE 1083 00:50:43,960 --> 00:50:45,480 DECISIONS THAT GIVES PATIENTS 1084 00:50:45,480 --> 00:50:47,480 AND EQUAL ROLE IN REFINING 1085 00:50:47,480 --> 00:50:48,920 APPROACHES AFTER COLLECTING 1086 00:50:48,920 --> 00:50:51,600 FEEDBACK AND THAT TRANSPARENTLY 1087 00:50:51,600 --> 00:50:53,080 FEEDS BACK THE LEARNINGS AND THE 1088 00:50:53,080 --> 00:50:54,480 IMPROVEMENTS TO THE LEADERSHIP 1089 00:50:54,480 --> 00:50:55,480 COMMITTEES AND PATIENTS SO WE 1090 00:50:55,480 --> 00:50:57,600 CAN SEE THAT LEARNING HAPPENING. 1091 00:50:57,600 --> 00:50:59,440 GETTING PATIENT ENGAGEMENT RIGHT 1092 00:50:59,440 --> 00:51:01,680 IN THIS, IS CRITICAL FOR BOTH 1093 00:51:01,680 --> 00:51:03,080 PATIENTS WHO ARE SUFFERING AND 1094 00:51:03,080 --> 00:51:05,240 FOR THE SCIENTIFIC FIELD WHICH 1095 00:51:05,240 --> 00:51:08,200 IS UNDER SCRUTINY SO A MORE 1096 00:51:08,200 --> 00:51:09,520 ROBUST LEARNING PROCESS WILL 1097 00:51:09,520 --> 00:51:12,400 EARN MORE TRUST FROM THE PUBLIC, 1098 00:51:12,400 --> 00:51:14,200 IMPROVE CLINICAL TRIAL AND 1099 00:51:14,200 --> 00:51:15,400 RECRUITMENTS AND IT WILL RESULT 1100 00:51:15,400 --> 00:51:19,920 IN BETTER SIGN SCIENTIFIC OUTCO. 1101 00:51:19,920 --> 00:51:22,600 >>THANK YOU FOR THAT. 1102 00:51:22,600 --> 00:51:28,040 I APOLOGIES, I CAN'T SEE THAT 1103 00:51:28,040 --> 00:51:28,520 NAME. 1104 00:51:28,520 --> 00:51:30,120 CERTAINLY, WE WOULD BE HAPPY TO 1105 00:51:30,120 --> 00:51:36,640 ENGAGE WITH YOU OFF LINE TO GET 1106 00:51:36,640 --> 00:51:37,920 A FURTHER UNDERSTANDING OF WHAT 1107 00:51:37,920 --> 00:51:38,880 YOU ARE HEARING FROM THE VICTIMS 1108 00:51:38,880 --> 00:51:40,640 YOU DESCRIBED. 1109 00:51:40,640 --> 00:51:43,720 CERTAINLY, WE'RE COMMITTED O THE 1110 00:51:43,720 --> 00:51:44,000 PREPS PEL. 1111 00:51:44,000 --> 00:51:53,120 AS YOU SAID, IT'S AN AMBITIOUS 1112 00:51:53,120 --> 00:52:03,600 GOAL -- AT SPEED, SCALE AND 1113 00:52:09,200 --> 00:52:11,960 COMPLEXITY. 1114 00:52:11,960 --> 00:52:13,120 I RECOGNIZE THAT WE PROBABLY 1115 00:52:13,120 --> 00:52:14,440 DON'T ALWAYS GET IT IT RIGHT, 1116 00:52:14,440 --> 00:52:16,920 AND WE'RE ALL LEARNING AS WE GO, 1117 00:52:16,920 --> 00:52:18,600 THAT'S WHY OUR OTHER APPROACHES 1118 00:52:18,600 --> 00:52:21,080 TO BE ADAPTIVE SO WE'RE ALL 1119 00:52:21,080 --> 00:52:22,720 LEARNING AND WE WOULD APPRECIATE 1120 00:52:22,720 --> 00:52:29,400 THAT FEEDBACK AND ANY EP ENHANCS 1121 00:52:29,400 --> 00:52:31,560 THAT THE PATIENTS PROPOSE IN 1122 00:52:31,560 --> 00:52:35,080 DEED THAT IS PART OF WHAT WE 1123 00:52:35,080 --> 00:52:42,440 ENGAGE THE NATIONAL COMMUNITY ET 1124 00:52:42,440 --> 00:52:44,160 GROUP AND WE CONTINUE TO THAT 1125 00:52:44,160 --> 00:52:44,560 IMPROVEMENT. 1126 00:52:44,560 --> 00:52:46,520 THAT SAID, I THINK WE SHOULD 1127 00:52:46,520 --> 00:52:51,560 ALSO APPRECIATE THAT CO CREATION 1128 00:52:51,560 --> 00:52:54,040 INVOLVES ALMOST AN OMNI 1129 00:52:54,040 --> 00:52:55,360 DIRECTIONAL CHANGE. 1130 00:52:55,360 --> 00:52:57,640 IT'S KNOWLEDGE EXCHANGE ACROSS 1131 00:52:57,640 --> 00:52:59,760 MANY DIFFERENT STAKEHOLDERS AND 1132 00:52:59,760 --> 00:53:02,360 SO WE HAVE TO, AT THE END OF THE 1133 00:53:02,360 --> 00:53:05,040 DAY, RECONCILE THE INPUT OF OUR 1134 00:53:05,040 --> 00:53:06,480 INDUSTRY PARTNERS AS WELL AS OUR 1135 00:53:06,480 --> 00:53:08,000 PATIENTS, PROVIDERS AND 1136 00:53:08,000 --> 00:53:11,240 CLINICIAN SCIENCES AND SO ALL 1137 00:53:11,240 --> 00:53:13,280 THOSE INPUTS ARE WELCOME, 1138 00:53:13,280 --> 00:53:14,680 LISTENED TO AND HAVE AN IMPACT 1139 00:53:14,680 --> 00:53:18,240 AND AN OUTCOME SO IT'S IMPORTANT 1140 00:53:18,240 --> 00:53:21,560 TO APPRECIATE NO ONE VOICE CAN 1141 00:53:21,560 --> 00:53:25,280 DRIVE THE ENTIRE CONSORTIUM AS 1142 00:53:25,280 --> 00:53:25,680 WELL. 1143 00:53:25,680 --> 00:53:28,320 AND SO, IT'S THAT BALANCE. 1144 00:53:28,320 --> 00:53:31,200 THE SAME WAY THAT THERE'S 1145 00:53:31,200 --> 00:53:32,400 OPINIONS AROUND THE ACD, NOT 1146 00:53:32,400 --> 00:53:35,080 EVERYTHING IS UNANIMOUS. 1147 00:53:35,080 --> 00:53:37,280 AND THEN DECISIONS HAVE TO BE 1148 00:53:37,280 --> 00:53:37,640 MADE. 1149 00:53:37,640 --> 00:53:39,400 IN THIS CASE BY THE NIH DIRECTOR 1150 00:53:39,400 --> 00:53:42,600 BUT THAT'S NOT IN ANYWAY 1151 00:53:42,600 --> 00:53:43,480 DIMINISHING ANY OF THE OPINIONS 1152 00:53:43,480 --> 00:53:46,040 OF ANY MEMBER OF THE ACD. 1153 00:53:46,040 --> 00:53:51,880 AND SO, AGAIN, WE APPRECIATE THE 1154 00:53:51,880 --> 00:53:53,880 OF FEEDBACK AND I'D LIKE TO 1155 00:53:53,880 --> 00:53:55,400 LEARN MORE AND WE'RE COMMITTED 1156 00:53:55,400 --> 00:53:56,400 ENSURING ALL THE VOICES ARE 1157 00:53:56,400 --> 00:53:57,440 HEARD AND ALSO RECOGNIZING, 1158 00:53:57,440 --> 00:54:01,200 BECAUSE OF THE DIVERSITY OF 1159 00:54:01,200 --> 00:54:03,080 VOICES, THAT SOMETIMES 1160 00:54:03,080 --> 00:54:05,600 EVERYTHING WON'T BE UNANIMOUS 1161 00:54:05,600 --> 00:54:06,880 AND WE'RE PRESSED TO MOVE 1162 00:54:06,880 --> 00:54:08,560 FORWARD AT THE SPEED DEMANDED BY 1163 00:54:08,560 --> 00:54:10,800 THE PATIENTS AND THAT IS PART OF 1164 00:54:10,800 --> 00:54:13,280 WORKING THROUGH THIS CONSORTIUM. 1165 00:54:13,280 --> 00:54:16,120 THANK YOU. 1166 00:54:16,120 --> 00:54:20,440 >>THANK YOU, GARY. 1167 00:54:20,440 --> 00:54:23,960 >>WELL, I WOULD LIKE TO ADD MY 1168 00:54:23,960 --> 00:54:25,920 CONGRATULATIONS TO THE 1169 00:54:25,920 --> 00:54:26,960 REMARKABLE ACHIEVEMENTS THAT 1170 00:54:26,960 --> 00:54:28,480 HAVE BEEN ESTABLISHED IN A 1171 00:54:28,480 --> 00:54:35,400 RELATIVELY SHORT PERIOD OF TIME. 1172 00:54:35,400 --> 00:54:37,760 Dr. GIBBONS, I'M OVER HERE. 1173 00:54:37,760 --> 00:54:39,880 SO, I WAS WONDERING WHETHER YOU 1174 00:54:39,880 --> 00:54:43,200 COULD SPEAK TO THE THERAPEUTIC 1175 00:54:43,200 --> 00:54:45,000 CHALLENGE, WHAT YOU HAVE 1176 00:54:45,000 --> 00:54:53,720 DESCRIBED AS A PULL-' SYSTEMS OS 1177 00:54:53,720 --> 00:54:55,120 BIOLOGY AND I HESITATE TO CALL 1178 00:54:55,120 --> 00:54:57,360 IT DISEASE BUT LONGSTANDING 1179 00:54:57,360 --> 00:54:59,600 CLINICAL CHALLENGE. 1180 00:54:59,600 --> 00:55:01,520 AND TO THAT END, I'M WONDERING 1181 00:55:01,520 --> 00:55:05,880 WHETHER YOU COULD DESCRIBE THE 1182 00:55:05,880 --> 00:55:08,720 STRATEGIES THAT YOU AND YOUR 1183 00:55:08,720 --> 00:55:10,040 COLLECTIVE RECOVER TEAM ARE 1184 00:55:10,040 --> 00:55:11,720 THOUGHT ABOUT IN TERMS OF 1185 00:55:11,720 --> 00:55:15,840 ADDRESSING THIS MULTI-SYSTEM 1186 00:55:15,840 --> 00:55:18,520 BIOLOGY IN PARALLEL EX YOU KNOW, 1187 00:55:18,520 --> 00:55:20,200 COMBINATION THERAPIES AS YOU GO 1188 00:55:20,200 --> 00:55:24,440 FORWARD AND CAN DESIGN CLINICAL 1189 00:55:24,440 --> 00:55:24,680 TRIALS. 1190 00:55:24,680 --> 00:55:29,840 >>THAT'S ANOTHER GREAT POINT. 1191 00:55:29,840 --> 00:55:33,240 HOPEFULLY YOU APPRECIATE WE'RE 1192 00:55:33,240 --> 00:55:34,720 APPROACHING PROFOUND HUMILITY. 1193 00:55:34,720 --> 00:55:39,040 WE HAVE AMBITIOUS GE GOALS HERE. 1194 00:55:39,040 --> 00:55:40,160 THAT IS A DAUNTING TASK. 1195 00:55:40,160 --> 00:55:41,320 THAT WAS PART OF THE REASON TO 1196 00:55:41,320 --> 00:55:43,480 ESTABLISH THE MASTER PROTOCOLS. 1197 00:55:43,480 --> 00:55:44,800 AGAIN, THERE ARE MANY WHO SORT 1198 00:55:44,800 --> 00:55:47,960 OF SAID, OH, LET'S JUST PUT OUT 1199 00:55:47,960 --> 00:55:50,320 A FOA FOR CLINICAL TRIALS AND 1200 00:55:50,320 --> 00:55:53,640 LET 30 GROUPS GO AT IT, AND SEE 1201 00:55:53,640 --> 00:55:55,920 WHAT HAPPENS. 1202 00:55:55,920 --> 00:56:03,640 AND THE CONCERN WAS THAT THEY 1203 00:56:03,640 --> 00:56:06,000 MAY USE DIFFERENT DEFINITIONS OF 1204 00:56:06,000 --> 00:56:08,400 PASC AND HAVE NOT MANY COM ON 1205 00:56:08,400 --> 00:56:10,080 DATA ELEMENTS OR COM ON 1206 00:56:10,080 --> 00:56:11,600 ENDPOINTS AND THERE WAS A 1207 00:56:11,600 --> 00:56:12,880 HIGH-RISK WE WOULD HAVE A KA 1208 00:56:12,880 --> 00:56:20,000 COULD INFORMATION WHICH MUCH LIE 1209 00:56:20,000 --> 00:56:21,200 BEGINNING OF THE COVID RESPONSE 1210 00:56:21,200 --> 00:56:29,880 YIELDED STUDIES THAT SO THAT IS 1211 00:56:29,880 --> 00:56:32,800 THE INTENTIONALITY OF THESE 1212 00:56:32,800 --> 00:56:33,880 PROTOCOLS TO LEVERAGE OF ALL 1213 00:56:33,880 --> 00:56:40,880 THOSE MORE SYSTEMATIC STRATEGIES 1214 00:56:40,880 --> 00:56:42,200 AND TOWARD THAT END, ONE OF THE 1215 00:56:42,200 --> 00:56:43,720 KEY PARTS IS TO TRACK, 1216 00:56:43,720 --> 00:56:47,120 PARTICULARLY SOME OF THE SUB 1217 00:56:47,120 --> 00:56:49,040 CLUSTERS WITHIN ALMOST ALL THE 1218 00:56:49,040 --> 00:56:51,080 MASTER PROTOCOLS O EVEN IF IF IT 1219 00:56:51,080 --> 00:56:52,520 IS ABOUT EXERCISE TOLERANCE YOU 1220 00:56:52,520 --> 00:56:56,920 STILL MIGHT CAPTURE THINGS ABOUT 1221 00:56:56,920 --> 00:56:59,040 SLEEP OR COGNITION, OR THESE 1222 00:56:59,040 --> 00:57:00,680 OTHER ELEMENTS AND THAT IS WHERE 1223 00:57:00,680 --> 00:57:02,320 WE'RE HOPING, BECAUSE THERE'S 1224 00:57:02,320 --> 00:57:08,080 CERTAIN CORE ELEMENTS THAT RUN 1225 00:57:08,080 --> 00:57:09,240 ACROSS, END POINTS THAT ARE 1226 00:57:09,240 --> 00:57:10,760 COMMON AND INCLUSION THAT WILL 1227 00:57:10,760 --> 00:57:14,720 DO, EVEN WITH A PARTICULAR 1228 00:57:14,720 --> 00:57:16,400 ANTIVIRAL, THAT IT MIGHT STILL 1229 00:57:16,400 --> 00:57:17,680 HAVE AN INFLUENCE ON SOME OF 1230 00:57:17,680 --> 00:57:19,400 THESE OTHER SYMPTOM COMPLEXES OR 1231 00:57:19,400 --> 00:57:21,400 SOMETHING THAT WE DO IN THE 1232 00:57:21,400 --> 00:57:24,240 SPACE OF AGAIN, FATIGUE, AND WE 1233 00:57:24,240 --> 00:57:27,720 HAVE LEARNED SOMETHING ELSE 1234 00:57:27,720 --> 00:57:30,520 ABOUT SOME OTHER ELEMENTS OF 1235 00:57:30,520 --> 00:57:31,880 CARDIO PULMONARY FUNCTION SO 1236 00:57:31,880 --> 00:57:36,280 IT'S REALLY WITH THAT INTENTION 1237 00:57:36,280 --> 00:57:39,000 MIND WE'RE CONTEMPLATING PHASE-2 1238 00:57:39,000 --> 00:57:40,920 TYPE MECHANISTIC STUDIES SUCH TO 1239 00:57:40,920 --> 00:57:42,320 YOUR POINT ABOUT THE HUMAN 1240 00:57:42,320 --> 00:57:44,120 SYSTEM BIOLOGY, IT MAY NOT 1241 00:57:44,120 --> 00:57:45,760 ALWAYS BE LINK TODAY A 1242 00:57:45,760 --> 00:57:52,520 LARGE-SCALE CLINICAL OUTCOME, BT 1243 00:57:52,520 --> 00:57:54,120 USING ANTIVIRAL HAS A PROBE YOU 1244 00:57:54,120 --> 00:57:59,320 WOULD BE ABLE TO TRACK, IN A 1245 00:57:59,320 --> 00:58:05,040 MECHAMECHANISTIC WAY T CFTC BEHR 1246 00:58:05,040 --> 00:58:07,080 OR HOW THE IMMUNE SYSTEM ADAPTS 1247 00:58:07,080 --> 00:58:08,640 OR DOES NOT IN RELATIONSHIP TO 1248 00:58:08,640 --> 00:58:10,120 THAT SO THIS BIOMARKER 1249 00:58:10,120 --> 00:58:12,360 DISCOVERY, THE BIOSPECIMENS, THE 1250 00:58:12,360 --> 00:58:14,960 ABILITY TO DO MECHANIC IS TICK 1251 00:58:14,960 --> 00:58:16,280 STUDIES EMBEDDED ON THESE 1252 00:58:16,280 --> 00:58:18,280 PROTOCOLS IS ALSO A KEY 1253 00:58:18,280 --> 00:58:20,600 COMPONENT OF THE INATTEMPT TO DO 1254 00:58:20,600 --> 00:58:21,840 WHAT YOU ARE SAYING. 1255 00:58:21,840 --> 00:58:22,360 HOPEFULLY THAT HELPS. 1256 00:58:22,360 --> 00:58:26,520 >>VERY EXCITING AND THANK YOU 1257 00:58:26,520 --> 00:58:28,800 SO MUCH. 1258 00:58:28,800 --> 00:58:29,040 HOWARD. 1259 00:58:29,040 --> 00:58:30,360 >>HI, Dr. GIBBONS. 1260 00:58:30,360 --> 00:58:32,320 I'M HOWARD CHANG AND I'M A 1261 00:58:32,320 --> 00:58:34,080 MEMBER OF THE ACD AND ALSO 1262 00:58:34,080 --> 00:58:35,880 PHYSICIAN SCIENTIST AT STAN 1263 00:58:35,880 --> 00:58:36,200 FARDOWSA ABDI. 1264 00:58:36,200 --> 00:58:42,720 THANSTANFORD.I HAVE A QUESTION E 1265 00:58:42,720 --> 00:58:46,200 CONNECTION BETWEEN THE LAWN 1266 00:58:46,200 --> 00:58:49,320 ATTITUDINAL COHORTS AND THE 1267 00:58:49,320 --> 00:58:55,520 DIFFERENT PILLARS OF THIS 1268 00:58:55,520 --> 00:58:57,400 CONSORTIUM AND YOU MADE A POINT 1269 00:58:57,400 --> 00:59:00,480 YOU RECRUITED A DIVERSE PATIENT 1270 00:59:00,480 --> 00:59:00,800 POPULATION. 1271 00:59:00,800 --> 00:59:04,040 I WONDER IF THOSE BLOOD SAMPLES 1272 00:59:04,040 --> 00:59:06,840 OF THE COHORTS ARE GOING BACK TO 1273 00:59:06,840 --> 00:59:09,560 THE LABS DOING THE PATHO BIOLOGY 1274 00:59:09,560 --> 00:59:12,040 STUDIES ARE THOSE MECHANISTIC 1275 00:59:12,040 --> 00:59:13,280 STUDIES SEPARATE AND THOSE 1276 00:59:13,280 --> 00:59:14,840 INVESTIGATORS SOLELY WORKING ON 1277 00:59:14,840 --> 00:59:16,880 SAMPLES AVAILABLE TO THEM AT 1278 00:59:16,880 --> 00:59:19,320 THEIR LOCAL INSTITUTIONS? 1279 00:59:19,320 --> 00:59:20,920 AND BECAUSE IT SEEMS THIS WOULD 1280 00:59:20,920 --> 00:59:22,360 BE A IMPORTANT OPPORTUNITY TO 1281 00:59:22,360 --> 00:59:26,280 MAKE SURE THESE MECHANISTIC 1282 00:59:26,280 --> 00:59:27,960 STUDIES WOULD ADDRESS THE 1283 00:59:27,960 --> 00:59:30,640 BIOLOGICAL BASIS COMING FROM 1284 00:59:30,640 --> 00:59:34,400 THESE DIVERSE PATIENT 1285 00:59:34,400 --> 00:59:37,760 POPULATIONS? 1286 00:59:37,760 --> 00:59:39,120 >>THANK YOU FOR THAT. 1287 00:59:39,120 --> 00:59:43,480 YES, WE OBVIOUSLY DON'T PRECLUDE 1288 00:59:43,480 --> 00:59:49,200 INVESTIGATORS WITHIN RECOVERED 1289 00:59:49,200 --> 00:59:50,320 CONSORTIUM, MANY WHO PURSUE 1290 00:59:50,320 --> 00:59:52,520 LOCAL STUDIES AND SOME OF THE 1291 00:59:52,520 --> 00:59:53,800 NOSI INVOLVE THAT BUT AS YOU 1292 00:59:53,800 --> 00:59:58,760 ALSO POINTED OUT, COUPLE TO THAT 1293 00:59:58,760 --> 01:00:01,560 IS THE THERE IS A CENTRAL VIAL 1294 01:00:01,560 --> 01:00:02,800 REPOSITORY AND ALL THE SITES ARE 1295 01:00:02,800 --> 01:00:04,960 COLLECTING THE BIOSPECIMENS THAT 1296 01:00:04,960 --> 01:00:07,960 ABOUT TO THAT CENTRALIZED 1297 01:00:07,960 --> 01:00:09,560 REPOSITORY THAT'S A PROTOCOL 1298 01:00:09,560 --> 01:00:13,800 THAT ON GOING AND QUITE FRANKLY 1299 01:00:13,800 --> 01:00:15,840 ONE AS WE LEARN MORE AND NEW 1300 01:00:15,840 --> 01:00:17,240 QUESTIONS ARE RAISED THAT EFFECT 1301 01:00:17,240 --> 01:00:19,880 HOW YOU DO BIOSPECIMEN 1302 01:00:19,880 --> 01:00:21,200 COLLECTIONS SO WE WANT TO BE 1303 01:00:21,200 --> 01:00:22,360 ADAPTIVE BUT THE BASIC CONCEPT 1304 01:00:22,360 --> 01:00:24,000 OF WHAT YOU ARE DESCRIBING IS 1305 01:00:24,000 --> 01:00:25,080 THERE AND THAT'S THE WHOLE 1306 01:00:25,080 --> 01:00:27,480 NOTION OF HAVING THE BIO 1307 01:00:27,480 --> 01:00:29,040 REPOSITORY AND I WISH I HAD THE 1308 01:00:29,040 --> 01:00:30,280 NUMBERS OFF MY TONGUE BUT I KNOW 1309 01:00:30,280 --> 01:00:34,080 IT'S IN THE MILLIONS ALREADY OF 1310 01:00:34,080 --> 01:00:35,480 BIOSPECIMENS THAT WERE 1311 01:00:35,480 --> 01:00:37,240 REPOSITORY AND THAT ENABLES US 1312 01:00:37,240 --> 01:00:40,320 TO DO THINGS AGAIN AT SCALE BUT 1313 01:00:40,320 --> 01:00:41,600 HOPEFULLY, IN HIGH-THROUGHPUT IN 1314 01:00:41,600 --> 01:00:44,120 A WAY THAT'S CONSISTENT WHERE 1315 01:00:44,120 --> 01:00:46,040 AGAIN, WE CAN MERGE DATA AND 1316 01:00:46,040 --> 01:00:48,520 LEVERAGE IT AS A COLLECTIVE AND 1317 01:00:48,520 --> 01:00:50,560 SO, THAT'S THE WHOLE INTENTION 1318 01:00:50,560 --> 01:00:52,480 AND THAT IS WHAT WE'RE EXECUTING 1319 01:00:52,480 --> 01:00:53,080 NOW. 1320 01:00:53,080 --> 01:00:54,680 IN DEED, A PRELIMINARY STATEMENT 1321 01:00:54,680 --> 01:00:56,280 IS IS UNDER WAY AND LOOKING AT 1322 01:00:56,280 --> 01:00:57,960 SPIKE PROTEIN PERSISTENCE IN 1323 01:00:57,960 --> 01:01:01,280 THAT SAME SORT OF FASHION IN 1324 01:01:01,280 --> 01:01:03,400 WHICH MANY OF YOU ARE AWARE, A 1325 01:01:03,400 --> 01:01:05,680 STUDY HAS BEEN PUBLISHED AT THE 1326 01:01:05,680 --> 01:01:07,800 BOSTON GROUP AND THAT LOOKED AT 1327 01:01:07,800 --> 01:01:10,640 THAT BUT IN LESS THAN 100 FOLKS 1328 01:01:10,640 --> 01:01:14,600 AND NOW THEY'RE ENGAGED IN THAT 1329 01:01:14,600 --> 01:01:17,400 ASSAY BEING EXTENDED ACROSS THE 1330 01:01:17,400 --> 01:01:20,840 OBSERVATIONAL STUDY WITH 1331 01:01:20,840 --> 01:01:22,720 BIOSPECIMENS COLLECTEDDED IN THE 1332 01:01:22,720 --> 01:01:22,960 COHORT. 1333 01:01:22,960 --> 01:01:31,040 >>THANK YOU, GREAT. 1334 01:01:31,040 --> 01:01:32,920 >>I DON'T SEE ANY ADDITIONAL 1335 01:01:32,920 --> 01:01:33,480 QUESTIONS. 1336 01:01:33,480 --> 01:01:37,000 GARY, I JUST WANT TO THANK YOU 1337 01:01:37,000 --> 01:01:38,320 FOR YOUR LEADERSHIP, FOR 1338 01:01:38,320 --> 01:01:40,720 WALTER'S LEADERSHIP, FOR TONY'S 1339 01:01:40,720 --> 01:01:42,720 LEADERSHIP AND THE VERY LARGE 1340 01:01:42,720 --> 01:01:46,400 TEAMS THAT YOU'VE ALL ASSEMBLED. 1341 01:01:46,400 --> 01:01:49,920 I'VE BEEN FOLLOWING THIS PERHAPS 1342 01:01:49,920 --> 01:01:51,560 MORE CLOSELY THAN ANYTHING ELSE 1343 01:01:51,560 --> 01:01:54,240 THAT IS GOING ON AT NIH RIGHT 1344 01:01:54,240 --> 01:01:58,680 NOW BECAUSE OF THE IMPORTANCE. 1345 01:01:58,680 --> 01:01:59,520 ACTUALLY, PART OF THE REASON WHY 1346 01:01:59,520 --> 01:02:01,720 I DISAPPEARED YESTERDAY IN THE 1347 01:02:01,720 --> 01:02:06,520 AFTERNOON WAS TO BRIEF A WHITE 1348 01:02:06,520 --> 01:02:08,080 HOUSE TEAM ON THE TOPIC ALTHOUGH 1349 01:02:08,080 --> 01:02:11,560 I WAS ONLY ALLOWED FIVE MINUTES. 1350 01:02:11,560 --> 01:02:12,840 IT WAS A LITTLE BIT MORE 1351 01:02:12,840 --> 01:02:16,280 COMPLICATED TO DO THAT. 1352 01:02:16,280 --> 01:02:19,560 I SUSPECT THAT EVERY SINGLE 1353 01:02:19,560 --> 01:02:22,720 PERSON WATCHING THIS ON VIDEO 1354 01:02:22,720 --> 01:02:24,680 CAST OR ON ZOOM, KNOWS AT LEAST 1355 01:02:24,680 --> 01:02:32,480 ONE PERSON WHO IS A REFLECT IDEA 1356 01:02:32,480 --> 01:02:33,920 THIS WHEN I SAY THIS, WE CAN'T 1357 01:02:33,920 --> 01:02:37,960 BE MORE PRECISE BECAUSE, AS YOU 1358 01:02:37,960 --> 01:02:43,160 LEARNED FROM GARY AND AS YOU NO 1359 01:02:43,160 --> 01:02:44,760 DOUBT APPRECIATE, AS THE VIRUS 1360 01:02:44,760 --> 01:02:48,560 EVOLVES, THE SYNDROME MAY BE 1361 01:02:48,560 --> 01:02:52,120 EVOLVING ALSO. 1362 01:02:52,120 --> 01:02:54,720 SOMEONE WHO INFECTED WITH THE 1363 01:02:54,720 --> 01:02:57,000 ANCESTORIAL STRAIN MAY LOOK 1364 01:02:57,000 --> 01:02:58,760 DIFFERENTLY THAN SOMEONE 1365 01:02:58,760 --> 01:03:00,760 INFECTED WITH OMICRON. 1366 01:03:00,760 --> 01:03:03,480 SO, THAT DOESN'T MAKE THINGS ANY 1367 01:03:03,480 --> 01:03:06,080 EASIER, PARTICULARLY AS YOU TRY 1368 01:03:06,080 --> 01:03:07,600 AND DETERMINE WHICH CONTROL 1369 01:03:07,600 --> 01:03:11,280 GROUP YOU ARE GOING TO USE. 1370 01:03:11,280 --> 01:03:14,040 SO THE COMPLEXITIES ARE ALL 1371 01:03:14,040 --> 01:03:17,640 THERE AND I PARTICULARLY 1372 01:03:17,640 --> 01:03:19,360 APPRECIATE THE EFFORT RELATED O 1373 01:03:19,360 --> 01:03:24,000 THE PATIENT ENGAGEMENT. 1374 01:03:24,000 --> 01:03:26,120 IN SOME WAYS, AND MAYBE IT 1375 01:03:26,120 --> 01:03:28,080 SHOULDN'T BE THIS WAY BUT IN 1376 01:03:28,080 --> 01:03:30,480 SOME WAYS, THIS IS NEW TERRITORY 1377 01:03:30,480 --> 01:03:34,520 FOR THESE TYPES OF STUDIES TO BE 1378 01:03:34,520 --> 01:03:36,920 ENGAGING AND I THINK THAT ACD 1379 01:03:36,920 --> 01:03:39,280 MEMBER WENDY CHAPMAN POINTED OUT 1380 01:03:39,280 --> 01:03:42,520 IN ISSUES THAT OBVIOUSLY I KNOW 1381 01:03:42,520 --> 01:03:43,640 YOU AND YOUR TEAM WILL GET 1382 01:03:43,640 --> 01:03:53,800 TOGETHER WITH HER TO TALK OUT. 1383 01:03:53,800 --> 01:03:55,000 UNDERSTANDING THIS IS A BALANCE 1384 01:03:55,000 --> 01:03:56,640 BUT WE WANT TO GET IT RIGHT. 1385 01:03:56,640 --> 01:03:58,400 THE THE PATIENT PERSPECTIVE, 1386 01:03:58,400 --> 01:03:59,600 GIVEN THE RANGE OF 1387 01:03:59,600 --> 01:04:02,600 PRESENTATIONS, IS SO VERY, VERY 1388 01:04:02,600 --> 01:04:04,320 IMPORTANT. 1389 01:04:04,320 --> 01:04:06,720 AT END, THERE'S NO DOUBT WE'RE 1390 01:04:06,720 --> 01:04:09,640 GOING TO LEARN A TREMENDOUS 1391 01:04:09,640 --> 01:04:13,080 AMOUNT AND I THINK IN SO DOING, 1392 01:04:13,080 --> 01:04:15,680 WE'LL LEARN HOW TO BEST HELP 1393 01:04:15,680 --> 01:04:18,280 INDIVIDUALS BUT IT IS -- WE'VE 1394 01:04:18,280 --> 01:04:20,400 AT THE BEGINNING OF THIS JOURNEY 1395 01:04:20,400 --> 01:04:23,200 AND I HOPE EVERYBODY APPRECIATES 1396 01:04:23,200 --> 01:04:27,280 THAT AND I CERTAINLY HOPE THAT 1397 01:04:27,280 --> 01:04:28,560 EVERYBODY CONTINUES TO EXERCISE 1398 01:04:28,560 --> 01:04:33,600 SOME DEGREE OF PATIENCE, WHICH I 1399 01:04:33,600 --> 01:04:35,160 KNOW IS HARD WHEN YOU DON'T FEEL 1400 01:04:35,160 --> 01:04:37,000 WELL BUT THAT'S THE HOPE. 1401 01:04:37,000 --> 01:04:39,040 BARBRA, YOU HAVE A COMMENT OR A 1402 01:04:39,040 --> 01:04:39,280 QUESTION. 1403 01:04:39,280 --> 01:04:42,080 >>YEAH, ACTUALLY IT WAS YOUR 1404 01:04:42,080 --> 01:04:43,840 MENTION OF THE TEMPORAL ASPECT 1405 01:04:43,840 --> 01:04:46,080 AND THE LONGITUDINAL ASPECT THAT 1406 01:04:46,080 --> 01:04:47,480 TRIGGERED A QUESTION. 1407 01:04:47,480 --> 01:04:50,200 AND I KNOW EARLY ON THERE WAS A 1408 01:04:50,200 --> 01:04:53,040 DECISION TO KEEP THIS FOCUSED ON 1409 01:04:53,040 --> 01:04:53,880 COVID-INITIATED PAST THAT YOU 1410 01:04:53,880 --> 01:04:57,680 DID COME BACK AND MENTION MECSF 1411 01:04:57,680 --> 01:04:59,360 EX OTHER KINDS OF SYNDROMES THAT 1412 01:04:59,360 --> 01:05:00,880 HAVE BEEN AROUND FOR A WHILE. 1413 01:05:00,880 --> 01:05:02,920 AND THAT MANY SUSPECTED RELATED 1414 01:05:02,920 --> 01:05:06,840 BUT NOT EXACTLY HOW. 1415 01:05:06,840 --> 01:05:09,080 AS WE SEE THE BEGINNINGS OF THE 1416 01:05:09,080 --> 01:05:10,480 CLUSTERINGS AND ALL OF THAT, I 1417 01:05:10,480 --> 01:05:13,200 WONDER IF THERE'S ANY THOUGHT OF 1418 01:05:13,200 --> 01:05:15,000 A RETHINK THAT MIGHT BRING SOME 1419 01:05:15,000 --> 01:05:18,080 OF THOSE IN PARTLY BECAUSE THOSE 1420 01:05:18,080 --> 01:05:19,520 SYNDROMES OFFER A PATIENT 1421 01:05:19,520 --> 01:05:22,080 POPULATION WHERE TIMES ARROW 1422 01:05:22,080 --> 01:05:23,600 GOES OUT FAR INTO THE FUTURE. 1423 01:05:23,600 --> 01:05:24,680 PEOPLE WHO HAVE BEEN EFFECTED 1424 01:05:24,680 --> 01:05:26,960 FOR A LONG TIME. 1425 01:05:26,960 --> 01:05:30,080 AND SO IT MIGHT BE TO BENEFIT TO 1426 01:05:30,080 --> 01:05:31,480 ACTUALLY BRING THAT IN SOONER 1427 01:05:31,480 --> 01:05:34,240 RATHER THAN LATER EVEN IF NOT IN 1428 01:05:34,240 --> 01:05:37,280 AT THE VERY START SO, IS IS THIS 1429 01:05:37,280 --> 01:05:38,600 ANY THINKING ABOUT BRINGING THAT 1430 01:05:38,600 --> 01:05:40,160 A LITTLE CLOSER IN AND GETTING 1431 01:05:40,160 --> 01:05:41,560 SOME OF THOSE PEOPLE TO THE 1432 01:05:41,560 --> 01:05:41,800 COHORT. 1433 01:05:41,800 --> 01:05:44,640 >>JUST MAYBE TO CLARIFY, I 1434 01:05:44,640 --> 01:05:47,120 DON'T THINK THERE WAS ANYTHING 1435 01:05:47,120 --> 01:05:51,160 PRECLUDED THEIR E ENGAGEMENT OR 1436 01:05:51,160 --> 01:05:51,640 INCLUSION. 1437 01:05:51,640 --> 01:05:54,000 THE FOCUS GIVEN TO US BY 1438 01:05:54,000 --> 01:05:55,680 CONGRESS, THIS IS A COVID 1439 01:05:55,680 --> 01:05:58,920 RESPONSE BUT WE'VE ALWAYS 1440 01:05:58,920 --> 01:06:00,160 ANTICIPATED COMPARATIVE STUDIES 1441 01:06:00,160 --> 01:06:01,720 OR INCLUSION AND WE'RE 1442 01:06:01,720 --> 01:06:04,280 APPROPRIATE AND CLINICAL TRIALS 1443 01:06:04,280 --> 01:06:05,360 AND ET CETERA. 1444 01:06:05,360 --> 01:06:07,000 THOSE INDIVIDUALS MEET THE 1445 01:06:07,000 --> 01:06:07,800 INCLUSIONS. 1446 01:06:07,800 --> 01:06:11,000 SO, IN DEED, I DON'T KNOW -- 1447 01:06:11,000 --> 01:06:13,160 >>ARE THE INCLUSION CRITERIA 1448 01:06:13,160 --> 01:06:16,720 SUCH THAT A COVID INFECTION 1449 01:06:16,720 --> 01:06:18,520 ITSELF DOESN'T NEED TON PART OF 1450 01:06:18,520 --> 01:06:19,240 INCLUSION? 1451 01:06:19,240 --> 01:06:20,840 >>WE'LL REALLY TALKING ABOUT 1452 01:06:20,840 --> 01:06:25,160 HOW DO WE TAKE THE PAST COHORT 1453 01:06:25,160 --> 01:06:28,480 ON RELATED TO OTHER SYNDROMES 1454 01:06:28,480 --> 01:06:31,000 AND SO IT'S NOT SO MUCH PUTTING 1455 01:06:31,000 --> 01:06:35,720 THEM INTO THE COHORT, BECAUSE 1456 01:06:35,720 --> 01:06:37,600 FOCUSING ON COVID BUT ALSO 1457 01:06:37,600 --> 01:06:38,680 ENSURING, PROBABLY PERHAPS 1458 01:06:38,680 --> 01:06:42,800 THROUGH OTHER REGISTRIES AROUND 1459 01:06:42,800 --> 01:06:46,000 POTS OR NECFS COMPARATIVE GROUPS 1460 01:06:46,000 --> 01:06:48,360 OF THOSE CLOSE VIRAL SYNDROMES. 1461 01:06:48,360 --> 01:06:49,360 YOU HAVE THE WORKING GROUP 1462 01:06:49,360 --> 01:06:50,880 THINKING ABOUT HOW TO DO THOSE 1463 01:06:50,880 --> 01:06:52,560 COMPARATIVE OR INTEGRATIVE KIND 1464 01:06:52,560 --> 01:06:57,280 OF STUDIES AND ANALYSIS AND 1465 01:06:57,280 --> 01:06:59,560 RECOGNIZING AGAIN THE FUNDS FROM 1466 01:06:59,560 --> 01:07:01,880 CONGRESS WERE AS PART OF THE 1467 01:07:01,880 --> 01:07:04,320 COVID RESPONSE AND THAT AS YOU 1468 01:07:04,320 --> 01:07:07,200 PROBABLY AWARE, IT'S BEEN ENGAGE 1469 01:07:07,200 --> 01:07:10,560 WITH THIS COMMUNITY FOR DECADES 1470 01:07:10,560 --> 01:07:11,880 AND ALREADY HAS INVOLVED 1471 01:07:11,880 --> 01:07:12,960 REGISTRIES AND WHAT HAVE YOU. 1472 01:07:12,960 --> 01:07:15,680 SO WE SEE THERE'S SOME ANCILLARY 1473 01:07:15,680 --> 01:07:16,760 STUDIES THAT WE WANTED THROUGH 1474 01:07:16,760 --> 01:07:19,280 THE NOSI THAT ARE DOING THOSE 1475 01:07:19,280 --> 01:07:21,200 COMPARATIVE STUDIES AS WE GO AND 1476 01:07:21,200 --> 01:07:23,560 THE NUMBER OF THE INVESTIGATORS 1477 01:07:23,560 --> 01:07:25,480 WITHIN RECOVER ARE DOING THOSE 1478 01:07:25,480 --> 01:07:27,360 COMPARATIVE STUDIES SO THAT WILL 1479 01:07:27,360 --> 01:07:28,920 BE DONE AND IT PROBABLY WON'T 1480 01:07:28,920 --> 01:07:33,360 INVOLVE A RESOURCES THAT 1481 01:07:33,360 --> 01:07:34,000 LEVERAGE RECOVER AND THEY 1482 01:07:34,000 --> 01:07:35,840 INVOLVE OTHER SOURCES AS WELL. 1483 01:07:35,840 --> 01:07:43,880 >>YES, O SO TO PUT A FINER POIS 1484 01:07:43,880 --> 01:07:45,960 THE VERY BEAUTY OF THE STUDY AS 1485 01:07:45,960 --> 01:07:49,480 IT IS IS THAT THINGS CAN BE 1486 01:07:49,480 --> 01:07:54,080 ASSAYS AT SCALE FOR EXAMPLE SO 1487 01:07:54,080 --> 01:07:55,040 THE LOSER CONNECTION ALSO LOSES 1488 01:07:55,040 --> 01:07:57,760 SOME OF THE POWER OF THAT HAVING 1489 01:07:57,760 --> 01:07:59,920 SAMPLES TREATED IN THE SAME WAY 1490 01:07:59,920 --> 01:08:01,680 DATA GATHERED IN THE SAME WAY. 1491 01:08:01,680 --> 01:08:03,040 SO ANYWAY, JUST HAVING SAID 1492 01:08:03,040 --> 01:08:05,120 THAT, WHAT YOU CAN DO TO BRING 1493 01:08:05,120 --> 01:08:05,800 IT CLOSER. 1494 01:08:05,800 --> 01:08:07,240 ANYTHING YOU CAN DO THAT 1495 01:08:07,240 --> 01:08:09,400 CONGRESS ALLOWS AND ANY OTHER 1496 01:08:09,400 --> 01:08:10,920 MECHANISM YOU CAN USE SEEMS LIKE 1497 01:08:10,920 --> 01:08:11,400 A GREAT IDEA. 1498 01:08:11,400 --> 01:08:13,680 >>AND WE'RE ENDEAVORING TO DO 1499 01:08:13,680 --> 01:08:14,720 SO, EXACTLY. 1500 01:08:14,720 --> 01:08:17,560 LAYING THE INSTRUMENTS AND 1501 01:08:17,560 --> 01:08:18,720 VETTING THE PROTOCOL AND USING 1502 01:08:18,720 --> 01:08:25,800 THE UNLESSMENTS FOR THAT INSTRUT 1503 01:08:25,800 --> 01:08:26,080 INTENTION. 1504 01:08:26,080 --> 01:08:26,480 >>THANK YOU. 1505 01:08:26,480 --> 01:08:28,080 >>I DON'T SEE ANY OTHER 1506 01:08:28,080 --> 01:08:30,680 COMMENTS OR QUESTIONS. 1507 01:08:30,680 --> 01:08:36,680 SO HADSO SHE WE TAKE A BREAK. 1508 01:08:36,680 --> 01:08:38,600 PEOPLE MAY COMING INTO SPECIFIC 1509 01:08:38,600 --> 01:08:40,640 SESSIONS WE'LL RECONVENE AT 1510 01:08:40,640 --> 01:08:42,280 10:30 AND AGAIN, GARY, THANK YOU 1511 01:08:42,280 --> 01:08:45,760 AND ALL YOUR COLLEAGUES FOR 1512 01:08:45,760 --> 01:08:46,280 EVERYTHING YOU'VE DONE. 1513 01:08:46,280 --> 01:09:02,320 >>THEY DO ALL THE WORK, THANK YOU 1514 01:09:02,320 --> 01:09:13,280 >>WE WILL KICK IT OFF BUT WE 1515 01:09:13,280 --> 01:09:13,720 ARE EXCITED TO HEAR THE 1516 01:09:13,720 --> 01:09:15,520 DISCUSSION BECAUSE I KNOW 1517 01:09:15,520 --> 01:09:16,680 EVERYONE IS INTERESTED WHAT WE 1518 01:09:16,680 --> 01:09:26,120 HAVE BEEN TALKING ABOUT AND 1519 01:09:26,120 --> 01:09:29,000 THE DIRECTOR OF AN ADULT AND 1520 01:09:29,000 --> 01:09:32,400 IN DOCTOR JORGENSEN ALREADY 1521 01:09:32,400 --> 01:09:34,280 THE LAST TWO DAYS AT THIS 1522 01:09:34,280 --> 01:09:39,560 POINT NEEDS NO INTRODUCTION. 1523 01:09:39,560 --> 01:09:40,920 AND THE DIRECTOR OF EXTERNAL 1524 01:09:40,920 --> 01:09:43,360 RESEARCH WILL PROVIDE THEIR 1525 01:09:43,360 --> 01:09:44,480 PERSPECTIVE AND AN UPDATE ON 1526 01:09:44,480 --> 01:09:46,560 THE WORK THAT WE ARE DOING. 1527 01:09:46,560 --> 01:09:47,080 >>THANK YOU AND TO 1528 01:09:47,080 --> 01:09:47,560 ALL OF OUR COLLEAGUES. 1529 01:09:47,560 --> 01:09:48,120 I AM IN THE ROOM BUT ALL THE 1530 01:09:48,120 --> 01:09:48,720 OTHER COLLEAGUES ARE VIRTUALLY 1531 01:09:48,720 --> 01:09:59,240 TO SHOW DIFFERENT EFFORTS AND 1532 01:09:59,560 --> 01:10:00,080 THE WHOLE NIH APPROACH FOR THE 1533 01:10:00,080 --> 01:10:00,680 POLICY PROCESS AND IN SUPPORT 1534 01:10:00,680 --> 01:10:01,280 OF OPEN DATA ALTHOUGH NOT THE 1535 01:10:01,280 --> 01:10:01,880 FOCUS OF TODAY WE ARE WORKING 1536 01:10:01,880 --> 01:10:10,200 VERY CLOSELY WITH THE 1537 01:10:10,200 --> 01:10:11,920 INTRAMURAL EFFORTS AS WELL SO 1538 01:10:11,920 --> 01:10:20,240 WE ARE PRIVILEGED TO HAVE SUCH 1539 01:10:20,240 --> 01:10:20,800 GREAT PEOPLE ON THIS TOPIC. 1540 01:10:20,800 --> 01:10:21,360 I WILL START US OFF I DON'T 1541 01:10:21,360 --> 01:10:21,960 THINK IT'S NECESSARY FOR THIS 1542 01:10:21,960 --> 01:10:26,000 GROUP BUT WE REALLY WANTED TO 1543 01:10:26,000 --> 01:10:26,520 PUT INTO CONTEXT THE OPEN 1544 01:10:26,520 --> 01:10:27,880 SCIENCE EFFORTS. 1545 01:10:27,880 --> 01:10:28,920 AS SCIENTIST WE KNOW DATA IS 1546 01:10:28,920 --> 01:10:32,720 THE CATALYST THAT THIS HAS 1547 01:10:32,720 --> 01:10:33,720 BEEN BROUGHT INTO FOCUS DURING 1548 01:10:33,720 --> 01:10:37,960 THE COVID-19 PANDEMIC. 1549 01:10:37,960 --> 01:10:38,480 YOU WILL SEE ON THIS SLIDE 1550 01:10:38,480 --> 01:10:39,960 WITH TYPICAL VACCINE 1551 01:10:39,960 --> 01:10:43,720 DEVELOPMENT THAT IT WAS LESS 1552 01:10:43,720 --> 01:10:46,840 THAN ONE YEAR FROM THE MRNA 1553 01:10:46,840 --> 01:10:49,040 VACCINE TO THE FORMER NIH 1554 01:10:49,040 --> 01:10:51,840 DIRECTOR GETTING HIS FIRST 1555 01:10:51,840 --> 01:11:00,800 VACCINE. 1556 01:11:00,800 --> 01:11:01,400 THIS IS BROUGHT INTO FOCUS BY 1557 01:11:01,400 --> 01:11:01,920 THE HUGE GLOBAL EFFORT FOR 1558 01:11:01,920 --> 01:11:03,000 INFORMATION AND DATA SHARING 1559 01:11:03,000 --> 01:11:03,560 WE SAW TWO.5 MILLION GENOMIC 1560 01:11:03,560 --> 01:11:04,080 SEQUENCES SHARED PROTEIN 1561 01:11:04,080 --> 01:11:05,720 STRUCTURES ROWS AND ROWS OF 1562 01:11:05,720 --> 01:11:10,240 CLINICAL DATA AND OF COURSE 1563 01:11:10,240 --> 01:11:10,840 QUALIFICATIONS AND PAPERS AND 1564 01:11:10,840 --> 01:11:14,160 WANT TO TAKE A NOTE ON THAT AS 1565 01:11:14,160 --> 01:11:23,400 WE HAVE HEARD CONVERSATIONS OF 1566 01:11:23,400 --> 01:11:23,880 THE IMPORTANCE OF PUBLIC 1567 01:11:23,880 --> 01:11:24,400 HEALTH DECISION-MAKING. 1568 01:11:24,400 --> 01:11:24,960 WE ARE STARTING TO SEE THAT 1569 01:11:24,960 --> 01:11:25,560 EVIDENCE AND ANALYSIS COME TO 1570 01:11:25,560 --> 01:11:29,920 BEAR TO EXAMINE THE IMPACTS IN 1571 01:11:29,920 --> 01:11:32,920 TERMS OF HOW THE DATA MAY 1572 01:11:32,920 --> 01:11:38,120 CHANGE AND WE ARE ACTUALLY 1573 01:11:38,120 --> 01:11:38,720 SEEING A LOT OF GOOD EVIDENCE 1574 01:11:38,720 --> 01:11:39,320 THAT THERE IS RELIABILITY AND 1575 01:11:39,320 --> 01:11:41,920 DATA SUPPORTED SO THIS IS AN 1576 01:11:41,920 --> 01:11:46,840 IMPORTANT CONCEPT FOR TODAY. 1577 01:11:46,840 --> 01:11:51,680 GOING THROUGH OUR CONVERSATION 1578 01:11:51,680 --> 01:11:52,440 WE WANT TO TALK ABOUT THE CORE 1579 01:11:52,440 --> 01:11:55,880 PRINCIPLES THAT EVERYONE WILL 1580 01:11:55,880 --> 01:11:57,400 AGREE THAT SCIENTIFIC DATA IS 1581 01:11:57,400 --> 01:11:58,920 A CATALYST FOR BREAKTHROUGHS 1582 01:11:58,920 --> 01:12:05,160 AND DISCOVERIES. 1583 01:12:05,160 --> 01:12:05,760 SO TO BE SUCCESSFUL BE NEED TO 1584 01:12:05,760 --> 01:12:06,480 HAVE AN INTEGRATED SET OF 1585 01:12:06,480 --> 01:12:08,520 POLICIES AND RESOURCES TO 1586 01:12:08,520 --> 01:12:09,080 PROMOTE RESPONSIBLE SHARING 1587 01:12:09,080 --> 01:12:15,760 AND REUSE AND OF COURSE NIH 1588 01:12:15,760 --> 01:12:16,360 AIMS TO PROMOTE EFFECTIVE DATA 1589 01:12:16,360 --> 01:12:16,920 SHARING AS THE RULE AND NOT 1590 01:12:16,920 --> 01:12:18,760 THE EXCEPTION. 1591 01:12:18,760 --> 01:12:19,680 SO IN THINKING ABOUT THE OPEN 1592 01:12:19,680 --> 01:12:24,000 DATA ECOSYSTEM AND IS A 1593 01:12:24,000 --> 01:12:24,600 COLLECTION OF THE DATA WORKING 1594 01:12:24,600 --> 01:12:32,840 WITH PARTICIPANTS HOW WE 1595 01:12:32,840 --> 01:12:33,440 ACTUALLY THINK ABOUT ANALYZING 1596 01:12:33,440 --> 01:12:34,040 MOST DATA AND CURATING THAT 1597 01:12:34,040 --> 01:12:34,640 INFORMATION WITH METADATA AND 1598 01:12:34,640 --> 01:12:40,840 HOW IT IS SHARED WITH 1599 01:12:40,840 --> 01:12:41,360 REPOSITORIES OR SCIENTIFIC 1600 01:12:41,360 --> 01:12:41,880 PUBLICATIONS OR IF IT IS 1601 01:12:41,880 --> 01:12:43,880 STORED AND MANAGED END OF 1602 01:12:43,880 --> 01:12:48,560 COURSE HOW IT IS USED OR 1603 01:12:48,560 --> 01:12:53,520 ACCESSED ENTERING THOSE 1604 01:12:53,520 --> 01:12:54,040 PROCEDURES AND MORE SO IN 1605 01:12:54,040 --> 01:12:58,040 TERMS OF THE NIH APPROACH AS 1606 01:12:58,040 --> 01:13:07,040 AN INTEGRATED AND IN WHAT THE 1607 01:13:07,040 --> 01:13:07,560 WHAT TYPE OF PLAN THE DATA 1608 01:13:07,560 --> 01:13:08,240 WILL COLLECT HOW WE ANALYZE IT 1609 01:13:08,240 --> 01:13:10,360 WHERE IT WILL BE STORED SO WE 1610 01:13:10,360 --> 01:13:11,240 ARE WORKING WITH INVESTIGATORS 1611 01:13:11,240 --> 01:13:16,280 TO MAKE THAT PRODUCT 1612 01:13:16,280 --> 01:13:17,640 RESPECTIVE PLAN THAT ENABLES 1613 01:13:17,640 --> 01:13:18,160 THE SPURRING OF THE FASTER 1614 01:13:18,160 --> 01:13:26,960 HIGHER QUALITY RESULTS AND 1615 01:13:26,960 --> 01:13:27,320 FUTURE INCREASE. 1616 01:13:27,320 --> 01:13:29,960 SO THIS PIPELINE LOOKS SIMPLE 1617 01:13:29,960 --> 01:13:35,000 BUT IT'S WAY MORE COMPLEX BUT 1618 01:13:35,000 --> 01:13:35,600 THERE ARE MANY DECISIONS THAT 1619 01:13:35,600 --> 01:13:38,360 MUST BE MADE ALONG THE WAY. 1620 01:13:38,360 --> 01:13:40,320 THINKING HOW DO WE MAKE BETA 1621 01:13:40,320 --> 01:13:47,680 NOT SHARED IF WE ARE 1622 01:13:47,680 --> 01:13:48,200 COLLECTING JUNK DATA AND 1623 01:13:48,200 --> 01:13:48,720 NOBODY IS USING IT WE ARE 1624 01:13:48,720 --> 01:13:49,280 CREATING A SYSTEM OF JUST 1625 01:13:49,280 --> 01:13:49,600 WASTING TIME. 1626 01:13:49,600 --> 01:13:51,320 SO THINK OF IMPORTANT DATA 1627 01:13:51,320 --> 01:13:52,720 HUNDREDS HOW WE ANNOTATE THE 1628 01:13:52,720 --> 01:13:58,280 DATA SETS WHAT ARE THE 1629 01:13:58,280 --> 01:14:02,920 SECURITY ISSUES AND THESE ARE 1630 01:14:02,920 --> 01:14:03,480 IMPORTANT PRINCIPLES WE WILL 1631 01:14:03,480 --> 01:14:05,520 TALK ABOUT IN VARIOUS ASPECTS 1632 01:14:05,520 --> 01:14:12,720 OF TODAY. 1633 01:14:12,720 --> 01:14:13,240 SO I WENT TO TAKE A QUICK 1634 01:14:13,240 --> 01:14:16,280 MOMENT TO TOUCH ON ACCESS 1635 01:14:16,280 --> 01:14:18,080 WHICH IS AN EXCITING AND 1636 01:14:18,080 --> 01:14:20,120 IMPORTANT FOCUS OF THIS 1637 01:14:20,120 --> 01:14:26,640 ADMINISTRATION YOU MAY HAVE 1638 01:14:26,640 --> 01:14:27,200 HEARD THE WHITE HOUSE OFFICE 1639 01:14:27,200 --> 01:14:27,760 OF SCIENCE TECHNOLOGY POLICY 1640 01:14:27,760 --> 01:14:28,320 RECENTLY ISSUED A MEMO TO 1641 01:14:28,320 --> 01:14:30,520 ENSURE FREE AND IMMEDIATE AND 1642 01:14:30,520 --> 01:14:34,560 EQUITABLE ACCESS TO RESEARCH 1643 01:14:34,560 --> 01:14:35,440 SO THIS REALLY CALLS FOR A 1644 01:14:35,440 --> 01:14:38,200 UNITED APPROACH ACROSS THE 1645 01:14:38,200 --> 01:14:39,000 FEDERAL GOVERNMENT REGARDLESS 1646 01:14:39,000 --> 01:14:46,400 OF BUDGET SIZE TO BE PUBLICLY 1647 01:14:46,400 --> 01:14:48,080 ACCESSIBLE AND WE'LL TALK MORE 1648 01:14:48,080 --> 01:14:50,280 ABOUT THAT IN A MINUTE 1649 01:14:50,280 --> 01:14:54,680 SCIENTIFIC DATA SHOULD BE 1650 01:14:54,680 --> 01:14:58,120 ACCESSIBLE AND SHOULD INCLUDE 1651 01:14:58,120 --> 01:15:04,640 APPROACHES FOR SCIENTIFIC DATA 1652 01:15:04,640 --> 01:15:05,160 AND FINALLY POLICIES TO 1653 01:15:05,160 --> 01:15:05,600 ESTABLISH RESEARCH OUR 1654 01:15:05,600 --> 01:15:06,080 RESPONSIBILITY ON DATA 1655 01:15:06,080 --> 01:15:15,000 MANAGEMENT SHARING AND THEN 1656 01:15:15,000 --> 01:15:15,600 WITH THOSE IDENTIFIERS ALONG 1657 01:15:15,600 --> 01:15:16,160 WITH THE METADATA SO WE ARE 1658 01:15:16,160 --> 01:15:22,920 VERY EXCITED TO SEE THIS MEMO 1659 01:15:22,920 --> 01:15:24,080 AND THEN TO CHAMPION THE 1660 01:15:24,080 --> 01:15:24,680 PRINCIPLES OF TRANSPARENCY AND 1661 01:15:24,680 --> 01:15:25,200 ACCESSIBILITY OF FEDERALLY 1662 01:15:25,200 --> 01:15:25,760 FUNDED RESEARCH FOR A REALLY 1663 01:15:25,760 --> 01:15:26,680 LONG TIME AND THEN TO BE 1664 01:15:26,680 --> 01:15:29,520 REALLY STRONG LEADERS IN THIS 1665 01:15:29,520 --> 01:15:31,520 FIELD. 1666 01:15:31,520 --> 01:15:32,120 THERE IS A STATEMENT ISSUED 1667 01:15:32,120 --> 01:15:34,680 ARTICULATING OUR THOUGHTS AND 1668 01:15:34,680 --> 01:15:35,160 PLANS. 1669 01:15:35,160 --> 01:15:40,400 >>AS WE MOVE FORWARD HOW TO 1670 01:15:40,400 --> 01:15:41,440 MAKE SURE WE ARE MAKING HIGH 1671 01:15:41,440 --> 01:15:48,880 QUALITY DATA AVAILABLE FOR YOU 1672 01:15:48,880 --> 01:15:49,400 REUSE AND DISCOVERY FILE 1673 01:15:49,400 --> 01:15:49,920 MINIMIZING THE BURDEN YOU 1674 01:15:49,920 --> 01:15:50,480 STAND RULES FOR THE SAKE OF 1675 01:15:50,480 --> 01:15:53,200 RULES WE WANT TO DO THIS IN A 1676 01:15:53,200 --> 01:15:56,480 WAY THAT IMPORTANTLY I WENT TO 1677 01:15:56,480 --> 01:15:58,520 HIGHLIGHT A REALLY STRONG 1678 01:15:58,520 --> 01:15:59,600 FOUNDATION. 1679 01:15:59,600 --> 01:16:06,920 SO AS MENTIONED THE STARTS 1680 01:16:06,920 --> 01:16:12,760 WITH DATA SHARING POLICY IS IN 1681 01:16:12,760 --> 01:16:13,240 2003 AND WITH THE PUBLIC 1682 01:16:13,240 --> 01:16:13,840 ACCESS POLICY WHICH IS ACCESS 1683 01:16:13,840 --> 01:16:15,800 TO PUBLICATIONS WITHIN ONE 1684 01:16:15,800 --> 01:16:17,640 YEAR AND WE ALSO HAVE THE 1685 01:16:17,640 --> 01:16:19,360 GENOMIC DATA SHARING POLICY 1686 01:16:19,360 --> 01:16:23,520 CLINICAL TRIAL POLICY AND TO 1687 01:16:23,520 --> 01:16:24,120 TALK ABOUT THE DATA MANAGEMENT 1688 01:16:24,120 --> 01:16:26,560 AND SHARING POLICY WHICH IS A 1689 01:16:26,560 --> 01:16:30,960 FOCUS OF THE NOW AND WE'RE OFF 1690 01:16:30,960 --> 01:16:34,840 TO MORE THAN A RUNNING START 1691 01:16:34,840 --> 01:16:35,520 COMING OUT IN 2022 TO FURTHER 1692 01:16:35,520 --> 01:16:36,080 EMPHASIZE THE WORK WE HAVE 1693 01:16:36,080 --> 01:16:37,520 BEEN DOING. 1694 01:16:37,520 --> 01:16:41,000 REGARDING THE DATA WE FIRST 1695 01:16:41,000 --> 01:16:50,000 SIGNAL TO THE COMMUNITY IN 1696 01:16:50,000 --> 01:16:50,600 2015 WE COLLECTED COMMUNITY 1697 01:16:50,600 --> 01:16:51,120 INPUT IN 2016 AND 2018 ALL 1698 01:16:51,120 --> 01:16:52,360 THAT LED TO THE DRAFT RELEASED 1699 01:16:52,360 --> 01:16:55,480 A PUBLIC COMMENT AND 1700 01:16:55,480 --> 01:16:56,080 IMPORTANTLY WE ISSUED A LOT OF 1701 01:16:56,080 --> 01:17:01,920 REQUEST FOR INFORMATION 1702 01:17:01,920 --> 01:17:02,480 RECEIVING OVER 200 COMMENTS 1703 01:17:02,480 --> 01:17:02,960 FROM UNIVERSITIES AND 1704 01:17:02,960 --> 01:17:03,480 RESEARCHERS AT LEAST 23 1705 01:17:03,480 --> 01:17:07,880 PROFESSIONAL SOCIETIES 1706 01:17:07,880 --> 01:17:12,440 RECOGNIZING THAT EVERYONE 1707 01:17:12,440 --> 01:17:14,920 ENJOYS THE FEDERAL REGISTER HE 1708 01:17:14,920 --> 01:17:15,560 NOTICED WE WENT OUT AROUND THE 1709 01:17:15,560 --> 01:17:20,480 COUNTRY MEETING WITH REGIONAL 1710 01:17:20,480 --> 01:17:21,600 COMMUNITY PEOPLE LIKE 1711 01:17:21,600 --> 01:17:26,880 LIBRARIANS TO SEE HOW THEY 1712 01:17:26,880 --> 01:17:28,200 REALLY HAVE INFRASTRUCTURE IN 1713 01:17:28,200 --> 01:17:33,200 PLACE. 1714 01:17:33,200 --> 01:17:33,760 ALSO TO ENSURE WERE MEETING 1715 01:17:33,760 --> 01:17:34,200 THE NEEDS OF TRIBAL 1716 01:17:34,200 --> 01:17:34,840 CONSULTATION THIS LED TO THE 1717 01:17:34,840 --> 01:17:36,480 FINAL POLICY BEING PUBLISHED 1718 01:17:36,480 --> 01:17:44,920 OCTOBER 2022 YEARS AGO TO HAVE 1719 01:17:44,920 --> 01:17:45,520 AN EFFECTIVE DATE OF TWO YEARS 1720 01:17:45,520 --> 01:17:46,080 TO WORK WITH THE COMMUNITY 1721 01:17:46,080 --> 01:17:46,640 WHAT THE GOALS WERE AND WHAT 1722 01:17:46,640 --> 01:17:47,160 TYPE OF RESOURCES WOULD BE 1723 01:17:47,160 --> 01:17:48,960 HELPFUL HERE WITH 1724 01:17:48,960 --> 01:17:55,440 IMPLEMENTATION. 1725 01:17:55,440 --> 01:17:56,000 WE HELD VIRTUAL SEMINARS AND 1726 01:17:56,000 --> 01:17:56,560 MET OUR PARTNERS AT THE 1727 01:17:56,560 --> 01:18:00,400 NATIONAL ACADEMY FOR PROTOCOLS 1728 01:18:00,400 --> 01:18:03,560 FOR SHARING AND INFRASTRUCTURE 1729 01:18:03,560 --> 01:18:04,640 INCENTIVES AND CREDIT FOR DATA 1730 01:18:04,640 --> 01:18:06,240 ARE STILL IMPORTANT THESE 1731 01:18:06,240 --> 01:18:10,480 WEBINARS HAVE BEEN AMAZINGLY 1732 01:18:10,480 --> 01:18:13,880 ATTENDED. 1733 01:18:13,880 --> 01:18:14,400 5000 PER WEBINAR WHICH IS 1734 01:18:14,400 --> 01:18:14,960 AMAZING SO WE HEARD THE NEED 1735 01:18:14,960 --> 01:18:18,880 FOR RESOURCES AROUND SOME 1736 01:18:18,880 --> 01:18:20,360 CLARITY IN TERMS OF WHAT MAKES 1737 01:18:20,360 --> 01:18:23,560 A GOOD PLAN OR REPOSITORY HOW 1738 01:18:23,560 --> 01:18:24,920 DO YOU PROTECT INFORMATION 1739 01:18:24,920 --> 01:18:30,480 SHARING AND WHAT TO DO? 1740 01:18:30,480 --> 01:18:31,040 I'M SO PROUD TO SAY THIS IS 1741 01:18:31,040 --> 01:18:34,400 BEEN A ROBUST EFFORT FOR SOME 1742 01:18:34,400 --> 01:18:34,960 PERIOD OF TIME THAT WE WILL 1743 01:18:34,960 --> 01:18:37,400 TALK ABOUT THAT OUR PARTNERS 1744 01:18:37,400 --> 01:18:41,400 ALSO WORKED REALLY HARD AND 1745 01:18:41,400 --> 01:18:42,600 ENGAGED BEYOND POSTDOC AND 1746 01:18:42,600 --> 01:18:46,320 GRADUATE STUDENTS AND ISSUING 1747 01:18:46,320 --> 01:18:48,120 PRIZES IN PARTNERSHIP WITH 1748 01:18:48,120 --> 01:18:49,200 INVESTIGATORS SO I ENCOURAGE 1749 01:18:49,200 --> 01:18:55,600 YOU TO CHECK THOSE OUT THAT IS 1750 01:18:55,600 --> 01:18:56,080 THE START OF THE DATA 1751 01:18:56,080 --> 01:18:56,680 MANAGEMENT SHARING POLICY ALSO 1752 01:18:56,680 --> 01:19:00,280 THE CURRENT PUBLIC ACCESS 1753 01:19:00,280 --> 01:19:01,280 POLICY RUN PREDOMINANTLY OUT 1754 01:19:01,280 --> 01:19:07,200 OF THE NATIONAL LIBRARY. 1755 01:19:07,200 --> 01:19:11,240 WE HAVE THE REQUIREMENT TO 1756 01:19:11,240 --> 01:19:12,200 KNOW ALL INVESTIGATORS FUNDED 1757 01:19:12,200 --> 01:19:20,880 BY NIH TO SUBMIT TO HAVE HAD 1758 01:19:20,880 --> 01:19:21,440 CENTRAL AND MUST BE PUBLICLY 1759 01:19:21,440 --> 01:19:22,000 AVAILABLE NO LATER 12 MONTHS 1760 01:19:22,000 --> 01:19:22,720 AFTER THE OFFICIAL DATE OF 1761 01:19:22,720 --> 01:19:26,720 PUBLICATION THIS IS BEEN THE 1762 01:19:26,720 --> 01:19:27,320 STATUS QUO FOR A DECADE WE ARE 1763 01:19:27,320 --> 01:19:28,320 PLEASED TO SAY WE ARE OVER 1764 01:19:28,320 --> 01:19:31,560 ONE.4 MILLION A SUPPORTED 1765 01:19:31,560 --> 01:19:34,680 ARTICLES HAVING THE PREMIER 1766 01:19:34,680 --> 01:19:36,760 DATABASE ONE THIRD OF THOSE 1767 01:19:36,760 --> 01:19:38,800 ARE ALREADY SUBMITTED WE ARE 1768 01:19:38,800 --> 01:19:49,080 WELL ON OUR WAY WITH THE ICP 1769 01:19:49,080 --> 01:19:49,600 MEMO REGARDING THE DATA 1770 01:19:49,600 --> 01:19:50,200 MANAGEMENT SHARING POLICY HOW 1771 01:19:50,200 --> 01:19:51,320 WE DEVELOP THAT BUT THE BASIC 1772 01:19:51,320 --> 01:19:53,480 REQUIREMENTS INVESTIGATORS ARE 1773 01:19:53,480 --> 01:19:58,120 TO SUBMIT A PLAN DATA SHARING 1774 01:19:58,120 --> 01:20:04,000 SHOULD BE CONSIDERED A DEFAULT 1775 01:20:04,000 --> 01:20:04,600 OVER LEGAL RESTRICTIONS SO WE 1776 01:20:04,600 --> 01:20:05,240 EXPECT RESEARCHERS TO MAXIMIZE 1777 01:20:05,240 --> 01:20:15,560 DATA SHARED WITH THE IMPORTANT 1778 01:20:15,560 --> 01:20:16,120 CAVEAT OF THE POLICY IS ALL 1779 01:20:16,120 --> 01:20:16,720 DATA SHOULD BE MANAGEMENT DOES 1780 01:20:16,720 --> 01:20:17,320 NOT HAVE TO BE SHARED THERE IS 1781 01:20:17,320 --> 01:20:17,800 A CLEAR DEFINITION OF 1782 01:20:17,800 --> 01:20:21,040 SCIENTIFIC DATA TO REPLICATE 1783 01:20:21,040 --> 01:20:22,160 FOR THOSE FINDINGS. 1784 01:20:22,160 --> 01:20:25,280 I ENCOURAGE YOU WITH THAT 1785 01:20:25,280 --> 01:20:26,280 SHARING POLICY WITH THE 1786 01:20:26,280 --> 01:20:32,520 ADVISORY COUNCIL IS SOMETHING 1787 01:20:32,520 --> 01:20:33,120 REFERRED SEVERAL TIMES AT THIS 1788 01:20:33,120 --> 01:20:33,680 POINT DOCTOR LAUER'S OFFICE 1789 01:20:33,680 --> 01:20:34,280 HAS MADE AN AMAZING ONE-STOP 1790 01:20:34,280 --> 01:20:37,720 SHOP FOR ALL OF THIS 1791 01:20:37,720 --> 01:20:39,000 INFORMATION WE ENCOURAGE YOU 1792 01:20:39,000 --> 01:20:42,000 TO CHECK THAT OUT. 1793 01:20:42,000 --> 01:20:46,640 IN TERMS OF MOVING FORWARD, WE 1794 01:20:46,640 --> 01:20:47,680 BELIEVE THE DATA SHARING 1795 01:20:47,680 --> 01:20:51,440 POLICY HAS GOTTEN IS OFF TO A 1796 01:20:51,440 --> 01:20:53,000 GREAT START. 1797 01:20:53,000 --> 01:20:58,640 WE INTEND TO PUT OUT A PLAN 1798 01:20:58,640 --> 01:20:59,080 HOW TO SATISFY THOSE 1799 01:20:59,080 --> 01:20:59,680 REQUIREMENTS TO BE SHARED FOR 1800 01:20:59,680 --> 01:21:04,920 PUBLIC COMMENT. 1801 01:21:04,920 --> 01:21:05,520 THE PLAN IS DUE TO OS STP IN 1802 01:21:05,520 --> 01:21:06,240 FEBRUARY. 1803 01:21:06,240 --> 01:21:09,560 WE DO NOT PLAN TO PUT OUT A 1804 01:21:09,560 --> 01:21:12,400 NEW ACCESS POLICY IN FEBRUARY 1805 01:21:12,400 --> 01:21:14,360 BUT SEE CAN SEE THE BEST WAY 1806 01:21:14,360 --> 01:21:16,960 TO IMPLEMENT THOSE POLICY 1807 01:21:16,960 --> 01:21:22,920 GOALS. 1808 01:21:22,920 --> 01:21:23,520 YOU WILL SEE WE INTEND TO HAVE 1809 01:21:23,520 --> 01:21:24,240 REVISED ACCESS POLICY BY DECEMBt 1810 01:21:24,240 --> 01:21:26,120 20, 25 GIVING US TIME TO 1811 01:21:26,120 --> 01:21:26,720 CONSULT WITH THE COMMUNITY AND 1812 01:21:26,720 --> 01:21:31,600 GET THE COMMUNITY READY. 1813 01:21:31,600 --> 01:21:33,840 REGARDING PERSISTENT 1814 01:21:33,840 --> 01:21:42,560 IDENTIFIERS THAT IS AN 1815 01:21:42,560 --> 01:21:43,160 IMPORTANT TOPIC FOR EVERYONE'S 1816 01:21:43,160 --> 01:21:43,720 WE ARE UNDERGOING A LOT OF 1817 01:21:43,720 --> 01:21:47,080 STAKEHOLDER SESSIONS SO STAY 1818 01:21:47,080 --> 01:21:48,880 TUNED. 1819 01:21:48,880 --> 01:21:50,040 ALL OF THIS IS GOOD WE HAVE 1820 01:21:50,040 --> 01:21:50,600 POLICIES WE ARE IMPLEMENTING 1821 01:21:50,600 --> 01:21:54,760 THAT THIS SUPPORTS THE 1822 01:21:54,760 --> 01:22:01,160 INFRASTRUCTURE FOR OUR GOALS. 1823 01:22:01,160 --> 01:22:04,240 SO I WILL TURN IT OVER TO 1824 01:22:04,240 --> 01:22:07,440 PATTY. 1825 01:22:07,440 --> 01:22:08,000 >>FROM THE NATIONAL LIBRARY 1826 01:22:08,000 --> 01:22:08,520 OF MEDICINE THANK YOU FOR 1827 01:22:08,520 --> 01:22:09,120 ACKNOWLEDGING THE WORK THAT 1828 01:22:09,120 --> 01:22:12,400 HAS BEEN HAPPENING AT AND LM 1829 01:22:12,400 --> 01:22:13,000 WITH PUBLIC ACCESS AS LONG AS 1830 01:22:13,000 --> 01:22:17,360 DATA SHARING GOING WITH BRIDE 1831 01:22:17,360 --> 01:22:17,960 NIH ACTIVITIES I WOULD LIKE TO 1832 01:22:17,960 --> 01:22:23,200 BRING TO YOUR ATTENTION THAT 1833 01:22:23,200 --> 01:22:25,240 PUB MED CENTRAL IS A 1834 01:22:25,240 --> 01:22:26,840 REPOSITORY ALMOST TWO THIRDS 1835 01:22:26,840 --> 01:22:29,560 OF THE ARTICLES PUBLISHED IN 1836 01:22:29,560 --> 01:22:30,840 THE LAST YEARS HAVE EITHER 1837 01:22:30,840 --> 01:22:39,200 DATA ACCESSIBILITY PLAN IF IT 1838 01:22:39,200 --> 01:22:41,320 IS SMALL ENOUGH SO IT HAS 1839 01:22:41,320 --> 01:22:44,480 BECOME AN IMPORTANT PLACE TO 1840 01:22:44,480 --> 01:22:46,600 SUPPORT DATA SHARING AND 1841 01:22:46,600 --> 01:22:47,120 INVESTIGATORS ARE ON BOARD 1842 01:22:47,120 --> 01:22:51,280 WITH THIS. 1843 01:22:51,280 --> 01:22:51,800 TALKING TODAY ABOUT THREE 1844 01:22:51,800 --> 01:22:53,360 THINGS ARE DOING AT NIH TO 1845 01:22:53,360 --> 01:22:56,400 FOSTER THE ABILITY TO SHARE 1846 01:22:56,400 --> 01:23:06,240 DATA. 1847 01:23:06,240 --> 01:23:06,640 PURSUANT TO EASE THE 1848 01:23:06,640 --> 01:23:07,200 ADMINISTRATIVE BURDEN ALSO 1849 01:23:07,200 --> 01:23:07,640 ENHANCE ADMINISTRATIVE 1850 01:23:07,640 --> 01:23:08,040 ACTIVITIES TO HELP 1851 01:23:08,040 --> 01:23:08,640 PARTICIPANTS SHARE THEIR DATA 1852 01:23:08,640 --> 01:23:09,160 AND THE THIRD IS WE ARE 1853 01:23:09,160 --> 01:23:10,040 STREAMLINING ACCESS TO MANAGE 1854 01:23:10,040 --> 01:23:12,200 THE SECURITY OF DATA. 1855 01:23:12,200 --> 01:23:19,360 BEGINNING WITH THE FIRST ONE 1856 01:23:19,360 --> 01:23:19,920 TO EASE THE ADMINISTRATIVE 1857 01:23:19,920 --> 01:23:20,520 BURDEN OF THE DATA WE BELIEVE 1858 01:23:20,520 --> 01:23:20,920 THE BEST STRATEGY TO 1859 01:23:20,920 --> 01:23:22,320 FACILITATE COMMUNITIES OF BEST 1860 01:23:22,320 --> 01:23:23,360 PRACTICE BIG PICTURE GOALS ARE 1861 01:23:23,360 --> 01:23:29,520 TO WORK WITH COMMUNITIES 1862 01:23:29,520 --> 01:23:30,960 ACROSS THE NIH WE MUST DEAL 1863 01:23:30,960 --> 01:23:32,560 WITH TO ESTABLISH APPROPRIATE 1864 01:23:32,560 --> 01:23:33,600 METADATA THE PRESCRIPTIONS OF 1865 01:23:33,600 --> 01:23:34,600 THE DATA SET. 1866 01:23:34,600 --> 01:23:39,000 MOST IMPORTANT TO LOCATING A 1867 01:23:39,000 --> 01:23:39,480 DATA SET IS HAVING GOOD 1868 01:23:39,480 --> 01:23:41,280 DESCRIPTIONS OF WHAT IS 1869 01:23:41,280 --> 01:23:44,280 PRESENT WE ARE DEVELOPING 1870 01:23:44,280 --> 01:23:45,120 BREASTS ON —- BEST PRACTICES 1871 01:23:45,120 --> 01:23:47,480 FOR DATA AND DATA SHARING 1872 01:23:47,480 --> 01:23:49,800 TRADING AND EDUCATING 1873 01:23:49,800 --> 01:23:52,520 RESEARCHERS IN THE IMPORTANCE 1874 01:23:52,520 --> 01:23:53,760 OF DATA SHARING FOCUSING ON 1875 01:23:53,760 --> 01:23:58,160 IMPROVING DISCOVERABILITY FOR 1876 01:23:58,160 --> 01:24:01,600 WHAT REFER TO AS A GENERAL 1877 01:24:01,600 --> 01:24:10,480 REPOSITORY THAT IS AN ENTITY 1878 01:24:10,480 --> 01:24:11,080 MULTIPLE LINES OF RESEARCH CAN 1879 01:24:11,080 --> 01:24:14,160 EXIST IN THE SAME REPOSITORY 1880 01:24:14,160 --> 01:24:21,080 SUCH AS THE BRAIN INITIATIVES 1881 01:24:21,080 --> 01:24:22,520 ON THE SEQUENCE REPOSITORY 1882 01:24:22,520 --> 01:24:23,040 THIS IS FOCUSED ON KIND OF 1883 01:24:23,040 --> 01:24:30,960 DATA OR PROJECT BOTH WOULD BE 1884 01:24:30,960 --> 01:24:32,480 NECESSARY TO REEF TO FULFILL 1885 01:24:32,480 --> 01:24:36,600 OUR ACCOUNT SO WE HAVE TO USE 1886 01:24:36,600 --> 01:24:46,360 THAT DATA SO WE ARE PROVIDING 1887 01:24:46,360 --> 01:24:46,880 WAYS TO INCENTIVIZE USE OF 1888 01:24:46,880 --> 01:24:47,080 DATA. 1889 01:24:47,080 --> 01:24:47,720 WE HAVE RELEASED AS OF 2022 A 1890 01:24:47,720 --> 01:24:54,680 NOTICE OF SPECIAL INTEREST TO 1891 01:24:54,680 --> 01:25:02,120 SUPPORT EXISTING REPOSITORIES 1892 01:25:02,120 --> 01:25:03,360 AND WITH THE INTEROPERABLE AND 1893 01:25:03,360 --> 01:25:06,200 ENTRUSTED THE CHARACTER WITH 1894 01:25:06,200 --> 01:25:08,160 THE PERMANENT AND 1895 01:25:08,160 --> 01:25:11,960 SUSTAINABILITY SO WE HAVE A 1896 01:25:11,960 --> 01:25:13,840 NOTICE OF SPECIAL INTEREST WE 1897 01:25:13,840 --> 01:25:20,240 ARE LOOKING FOR RESEARCH TO 1898 01:25:20,240 --> 01:25:25,880 BECOME FAIR AND TRUSTABLE THIS 1899 01:25:25,880 --> 01:25:27,920 IS REFERRED TO THE GRAY 1900 01:25:27,920 --> 01:25:30,480 INITIATIVE AND WITH THAT 1901 01:25:30,480 --> 01:25:31,360 ECOSYSTEM INITIATIVE ON THE 1902 01:25:31,360 --> 01:25:41,360 SCREEN IN FRONT OF YOU SO 1903 01:25:41,360 --> 01:25:43,400 THESE ARE ALL TWO DIFFERENT 1904 01:25:43,400 --> 01:25:50,920 COMMUNITIES AND SO THAT 1905 01:25:50,920 --> 01:25:51,480 RESEARCHERS HAVE TOOLS THEY 1906 01:25:51,480 --> 01:25:55,240 CAN USE AND THEN TO SEE WHO DO 1907 01:25:55,240 --> 01:25:59,640 THEY FIT WITH AND THEN TO 1908 01:25:59,640 --> 01:26:04,280 PROVIDE THE EDUCATION AND 1909 01:26:04,280 --> 01:26:12,440 SUPPORT. 1910 01:26:12,440 --> 01:26:13,040 WITH THAT INVESTIGATOR OF THE 1911 01:26:13,040 --> 01:26:13,600 FUTURE MAY NOT KNOW EXACTLY 1912 01:26:13,600 --> 01:26:14,160 WHICH DATA '-APOSTROPHE BE 1913 01:26:14,160 --> 01:26:19,200 INTERESTED IN WHAT THE 1914 01:26:19,200 --> 01:26:19,800 SPECIALIZED SEARCH STRATEGY TO 1915 01:26:19,800 --> 01:26:20,400 FIND THE MOST APPROPRIATE 1916 01:26:20,400 --> 01:26:25,840 REPOSITORY FOR THIS PERSON. 1917 01:26:25,840 --> 01:26:26,800 NEXT SLIDE. 1918 01:26:26,800 --> 01:26:27,400 >>ANY AGES DOING ITS PART TO 1919 01:26:27,400 --> 01:26:30,880 STREAMLINE ACCESS TO MAINTAIN 1920 01:26:30,880 --> 01:26:31,480 SECURITY THIS IS PART OF THE 1921 01:26:31,480 --> 01:26:33,080 ADMINISTRATIVE STRATEGY. 1922 01:26:33,080 --> 01:26:36,000 BIG PICTURE GOALS ARE TO 1923 01:26:36,000 --> 01:26:39,000 DEVELOP TO ASSIST IN THE 1924 01:26:39,000 --> 01:26:45,760 APPROACH TO OPEN DATA WE HAVE 1925 01:26:45,760 --> 01:26:46,840 SEVERAL ACTIVITIES THAT WE 1926 01:26:46,840 --> 01:26:52,960 CARRIED OUT BETWEEN 2020 1927 01:26:52,960 --> 01:26:53,560 THROUGH 2022 WITH A CONTROLLED 1928 01:26:53,560 --> 01:27:01,640 ACCESS DATA ECOSYSTEM AND 1929 01:27:01,640 --> 01:27:01,880 SERVICES. 1930 01:27:01,880 --> 01:27:02,360 WE RECOGNIZE NIH HAS A 1931 01:27:02,360 --> 01:27:02,960 RESPONSIBILITY TO MAINTAIN THE 1932 01:27:02,960 --> 01:27:06,400 SECURITY AN APPROPRIATE ACCESS 1933 01:27:06,400 --> 01:27:07,320 WHETHER STEWARDED BY THE NIH 1934 01:27:07,320 --> 01:27:10,880 ARE PHYSICALLY HELD BY THE NIH 1935 01:27:10,880 --> 01:27:11,440 IN ORDER TO DO THIS WE MUST 1936 01:27:11,440 --> 01:27:14,000 FIRST DEVELOP A SINGLE POLICY 1937 01:27:14,000 --> 01:27:16,800 FRAMEWORK THAT GOVERNS DATA 1938 01:27:16,800 --> 01:27:18,040 ACCESS RIGHT NOW WE HAVE 22 1939 01:27:18,040 --> 01:27:20,680 DIFFERENT ACCESS THAT IS 1940 01:27:20,680 --> 01:27:26,880 FACILITATED THAT CONTROLLED 1941 01:27:26,880 --> 01:27:27,400 ACCESS DATA SO THAT IT IS 1942 01:27:27,400 --> 01:27:29,640 STREAMLINED AND THEN AN EASIER 1943 01:27:29,640 --> 01:27:34,120 WAY TO ACCESS THIS INFORMATION 1944 01:27:34,120 --> 01:27:39,520 FROM THE RELATED DOCUMENTS 1945 01:27:39,520 --> 01:27:40,120 WITH THAT REQUEST TO ACCESS 1946 01:27:40,120 --> 01:27:40,600 DATA IN PARTICULAR WE 1947 01:27:40,600 --> 01:27:41,240 UNDERSTAND THAT THEY WILL BE 1948 01:27:41,240 --> 01:27:41,480 DOING. 1949 01:27:41,480 --> 01:27:45,520 WE ALSO PLAN TO STREAMLINE THE 1950 01:27:45,520 --> 01:27:49,960 ACCESS PROCESS TO AN AUTOMATED 1951 01:27:49,960 --> 01:27:52,800 WEB-BASED APPROACH TO MUCH 1952 01:27:52,800 --> 01:27:56,120 IMPROVE WHEN ACCESSING DATA 1953 01:27:56,120 --> 01:27:56,560 AND TRACKING. 1954 01:27:56,560 --> 01:28:01,360 TO FACILITATE GREATER EFFORTS 1955 01:28:01,360 --> 01:28:01,920 TO PROTECT PARTICIPANTS FOR 1956 01:28:01,920 --> 01:28:03,440 REAFFIRMED IDENTIFICATION WHEN 1957 01:28:03,440 --> 01:28:03,960 DATA FROM MORE THAN ONE 1958 01:28:03,960 --> 01:28:09,000 RESOURCE IS USED TO ALLOW FOR 1959 01:28:09,000 --> 01:28:14,120 WE IDENTIFICATION AND WHAT THE 1960 01:28:14,120 --> 01:28:14,720 FUTURE USE AND RESPONSIBLE USE 1961 01:28:14,720 --> 01:28:20,480 OF DATA SCHEMATICALLY WHAT WE 1962 01:28:20,480 --> 01:28:21,280 ARE BUILDING AT THE NIH IT IS 1963 01:28:21,280 --> 01:28:24,480 A DATA STATION THAT I ONCE 1964 01:28:24,480 --> 01:28:27,520 DEPOSITED DATA TO THE 1965 01:28:27,520 --> 01:28:30,400 DEPOSITORY ARE WANTS TO ACCESS 1966 01:28:30,400 --> 01:28:32,160 THE DATA AS A SINGLE POINT OF 1967 01:28:32,160 --> 01:28:33,480 ACCESS WITH THE POLICIES AND 1968 01:28:33,480 --> 01:28:38,960 DOCUMENTS TO STREAMLINE TO 1969 01:28:38,960 --> 01:28:39,520 ENSURE PARTICIPANTS SECURITY 1970 01:28:39,520 --> 01:28:42,000 SO CRITICAL COMMITMENT ON OUR 1971 01:28:42,000 --> 01:28:48,480 PART. 1972 01:28:48,480 --> 01:28:48,920 ALSO MANY DATA ACCESS 1973 01:28:48,920 --> 01:28:49,440 RESPONSIBILITIES REQUIRE 1974 01:28:49,440 --> 01:28:50,000 INSTITUTIONAL AGREEMENTS AS 1975 01:28:50,000 --> 01:28:51,080 WELL AS INDIVIDUAL 1976 01:28:51,080 --> 01:28:57,760 INVESTIGATOR AGREEMENTS. 1977 01:28:57,760 --> 01:28:58,320 AT THIS POINT TO STREAMLINE 1978 01:28:58,320 --> 01:28:58,880 ACCESS TO MAINTAIN SECURITY 1979 01:28:58,880 --> 01:28:59,440 FOR PARTICIPANT DATA WE ARE 1980 01:28:59,440 --> 01:29:07,240 BUILDING A COMPREHENSIVE 1981 01:29:07,240 --> 01:29:07,720 COMPILING DATA ACCESS 1982 01:29:07,720 --> 01:29:08,280 AGREEMENTS AND THE TERMS OF 1983 01:29:08,280 --> 01:29:08,520 ACCESS. 1984 01:29:08,520 --> 01:29:09,640 WE LIKE THESE TO BE 1985 01:29:09,640 --> 01:29:14,800 STANDARDIZED BECAUSE YOU 1986 01:29:14,800 --> 01:29:15,240 RECOGNIZE DATA USED BY 1987 01:29:15,240 --> 01:29:15,800 INVESTIGATORS FOR MULTIPLE 1988 01:29:15,800 --> 01:29:16,480 INSTITUTES AND CENTERS SO THAT 1989 01:29:16,480 --> 01:29:20,160 IS A GREAT ASSISTANCE 1990 01:29:20,160 --> 01:29:21,760 UNDERTAKING A PILOT STUDY TO 1991 01:29:21,760 --> 01:29:25,280 INCREASE HOW THOSE BEST DATA 1992 01:29:25,280 --> 01:29:29,280 DECISION-MAKING PROCESS RIGHT 1993 01:29:29,280 --> 01:29:29,840 NOW WE COULD GO THROUGH FIVE 1994 01:29:29,840 --> 01:29:33,520 OR SIX OR SEVEN STEPS WHICH 1995 01:29:33,520 --> 01:29:34,920 CAN CAUSE UNNECESSARY DELAYS 1996 01:29:34,920 --> 01:29:37,200 IN THE RESEARCH PROCESS. 1997 01:29:37,200 --> 01:29:39,360 WE ARE WORKING WITH THE CENTER 1998 01:29:39,360 --> 01:29:42,760 FOR INFORMATION TECHNOLOGY TO 1999 01:29:42,760 --> 01:29:43,440 UPDATE THE SECURITY PRACTICES 2000 01:29:43,440 --> 01:29:45,240 FOR CONTROLLED ACCESS INCLUDE 2001 01:29:45,240 --> 01:29:47,640 MAKING SURE THE EFFECTIVE USE 2002 01:29:47,640 --> 01:29:50,880 OF INDIVIDUAL CONTROL THE 2003 01:29:50,880 --> 01:29:55,480 AUTHENTICATION SERVICE A 2004 01:29:55,480 --> 01:29:56,080 TOKENIZATION PROCESS TO MAKE 2005 01:29:56,080 --> 01:29:56,520 SURE THE INDIVIDUAL 2006 01:29:56,520 --> 01:29:58,920 INVESTIGATOR HAS THE RIGHT TO 2007 01:29:58,920 --> 01:30:04,240 ONLY RELEVANT DATA SETS I'M BE 2008 01:30:04,240 --> 01:30:04,840 HAPPY TO TALK ABOUT THIS MORE 2009 01:30:04,840 --> 01:30:13,360 IN THE Q&A. 2010 01:30:13,360 --> 01:30:15,320 >>WE TALKED ABOUT THE US 2011 01:30:15,320 --> 01:30:16,560 GOVERNMENT POLICY PRIORITIES 2012 01:30:16,560 --> 01:30:23,000 STRIVING TO MAKE SCIENTIFIC 2013 01:30:23,000 --> 01:30:23,560 DATA AND RESULTS AS OPEN AS 2014 01:30:23,560 --> 01:30:24,640 POSSIBLE AND NIH IS ALREADY 2015 01:30:24,640 --> 01:30:29,200 TAKEN AMAZING STEPS TO GET US 2016 01:30:29,200 --> 01:30:29,760 OFF AND RUNNING TO MEET THE 2017 01:30:29,760 --> 01:30:30,360 FEDERAL GOVERNMENT BY EXAMPLE 2018 01:30:30,360 --> 01:30:33,160 TO TAKE A PROACTIVE APPROACH 2019 01:30:33,160 --> 01:30:34,520 THAT WE HAVE SPENT THINKING 2020 01:30:34,520 --> 01:30:41,560 THROUGH THE ISSUES. 2021 01:30:41,560 --> 01:30:42,160 WE TALKED A LOT ABOUT THAT AND 2022 01:30:42,160 --> 01:30:42,800 THE INFRASTRUCTURE BUT I WANT 2023 01:30:42,800 --> 01:30:43,400 YOU TO HEAR ABOUT THE EFFORTS 2024 01:30:43,400 --> 01:30:46,400 WE ARE DOING TO ANTICIPATE TO 2025 01:30:46,400 --> 01:30:46,960 KEEP HER CELLS READY WHAT'S 2026 01:30:46,960 --> 01:30:48,880 COMING DOWN THE LINE SO WHAT'S 2027 01:30:48,880 --> 01:30:54,440 VERY EXCITING FOR OUR TEAM IS 2028 01:30:54,440 --> 01:30:54,960 THINKING THROUGH HOW THE 2029 01:30:54,960 --> 01:30:55,400 FUTURE OF SCIENCE OF 2030 01:30:55,400 --> 01:30:57,120 INFORMATION SHARING HOW DO 2031 01:30:57,120 --> 01:31:03,600 PEOPLE FEEL ABOUT THEIR DATA 2032 01:31:03,600 --> 01:31:04,160 IN THE OPEN DATA ECOSYSTEM? 2033 01:31:04,160 --> 01:31:04,720 HOW DO PEOPLE THINK ABOUT 2034 01:31:04,720 --> 01:31:06,160 THEIR DATA SUCH AS DIGITAL 2035 01:31:06,160 --> 01:31:08,880 HEALTH AND SOCIAL MEDIA MANY 2036 01:31:08,880 --> 01:31:18,200 HAVE BIOMETRIC DEVICES THERE 2037 01:31:18,200 --> 01:31:19,160 IS NEW TYPES OF ANALYSIS WHICH 2038 01:31:19,160 --> 01:31:22,400 IS AN ALGORITHM THAT CAN BE 2039 01:31:22,400 --> 01:31:23,840 VERY REVOLUTIONARY FOR 2040 01:31:23,840 --> 01:31:28,920 HEALTHCARE WE STILL DON'T KNOW 2041 01:31:28,920 --> 01:31:29,480 WHERE THE BIASES INTERFERING 2042 01:31:29,480 --> 01:31:30,080 THAT THOSE NEW TYPES OF DATA 2043 01:31:30,080 --> 01:31:31,240 LINKAGE AND AGGREGATION WHICH 2044 01:31:31,240 --> 01:31:32,200 IS CRITICALLY IMPORTANT FOR 2045 01:31:32,200 --> 01:31:36,000 PUBLIC HEALTH SO HOW DO 2046 01:31:36,000 --> 01:31:37,880 POLICYMAKERS PRIORITIZE 2047 01:31:37,880 --> 01:31:41,400 PARTICIPANT TO ENSURE THAT 2048 01:31:41,400 --> 01:31:42,960 SCIENCE IS MOVING FORWARD SO 2049 01:31:42,960 --> 01:31:47,600 WE PILOT THE NOVEL AND 2050 01:31:47,600 --> 01:31:51,000 EXCEPTIONAL ADVISORY COMMITTEE 2051 01:31:51,000 --> 01:31:52,320 AND WHAT WE ARE DOING IS GOING 2052 01:31:52,320 --> 01:31:54,840 BEYOND THE BELTWAY WITH 2053 01:31:54,840 --> 01:31:55,440 RESEARCH QUESTIONS SO WHAT ARE 2054 01:31:55,440 --> 01:31:59,080 WE TRYING TO DO WITH THIS NEW 2055 01:31:59,080 --> 01:32:00,440 TYPE OF DATA AND APPROACH? 2056 01:32:00,440 --> 01:32:03,880 GOING AFTER THE COMMUNITY TO 2057 01:32:03,880 --> 01:32:09,720 SAY HERE IS THE POTENTIAL RISK 2058 01:32:09,720 --> 01:32:10,320 HOW DOES THIS INPUT MATTER TO 2059 01:32:10,320 --> 01:32:11,880 YOU AND REALLY TO HEAR FROM 2060 01:32:11,880 --> 01:32:15,120 COMMUNITIES TO UNDERSTAND 2061 01:32:15,120 --> 01:32:15,640 WHERE THEIR THOUGHTS ARE. 2062 01:32:15,640 --> 01:32:18,680 WE JUST RECENTLY LAUNCHED THE 2063 01:32:18,680 --> 01:32:19,720 COMMUNITY CONVERSATION AROUND 2064 01:32:19,720 --> 01:32:22,360 THE COUNTRY IN THE WESTERN 2065 01:32:22,360 --> 01:32:28,840 PART OF THE COUNTRY SO HAVING 2066 01:32:28,840 --> 01:32:31,120 SMALL GROUP BREAKOUTS AND 2067 01:32:31,120 --> 01:32:35,240 WORKING THROUGH A BIG PUBLIC 2068 01:32:35,240 --> 01:32:40,480 DEBRIEF SESSION AND HOW THAT 2069 01:32:40,480 --> 01:32:41,000 HELPS POLICYMAKING IN THE 2070 01:32:41,000 --> 01:32:42,440 FUTURE AND HOW THIS WILL 2071 01:32:42,440 --> 01:32:48,520 INFORM OUR OPEN DATA ECOSYSTEM 2072 01:32:48,520 --> 01:32:49,080 MOVING FORWARD TO ENSURE WE 2073 01:32:49,080 --> 01:32:49,600 ARE KEEPING THE PUBLIC AND 2074 01:32:49,600 --> 01:32:51,160 PARTICIPANTS ENGAGED MOVING 2075 01:32:51,160 --> 01:32:59,040 FORWARD AND REALLY WANT TO 2076 01:32:59,040 --> 01:32:59,640 ENGAGE YOU ALL KNOWING THAT WE 2077 01:32:59,640 --> 01:33:00,200 HAVE THESE POLICY DIRECTIVES 2078 01:33:00,200 --> 01:33:01,000 IN PLACE AND MOVING FORWARD 2079 01:33:01,000 --> 01:33:08,080 WHAT DOES THE FUTURE LOOK LIKE 2080 01:33:08,080 --> 01:33:08,680 AND TO FACILITATE THE VALUE 2081 01:33:08,680 --> 01:33:09,240 SHARING IS NOT ENOUGH IT'S 2082 01:33:09,240 --> 01:33:11,280 IMPORTANT TO HAVE VALUABLE 2083 01:33:11,280 --> 01:33:13,280 DATA THAT IS ACCESSIBLE AND 2084 01:33:13,280 --> 01:33:13,560 REUSABLE. 2085 01:33:13,560 --> 01:33:18,720 ALSO WORKING ON REALLY TO 2086 01:33:18,720 --> 01:33:22,360 ENABLE PARTNERS AND WHAT 2087 01:33:22,360 --> 01:33:28,320 INCENTIVES CAN WE PROMOTE WITH 2088 01:33:28,320 --> 01:33:28,880 A HIGH PUBLISHING VALUE SEE 2089 01:33:28,880 --> 01:33:31,160 THESE ARE THE QUESTIONS BUT 2090 01:33:31,160 --> 01:33:36,800 BEFORE OPENING UP REALLY WHO 2091 01:33:36,800 --> 01:33:39,760 HAS BEEN AT THE FOREFRONT 2092 01:33:39,760 --> 01:33:48,080 WORKING ON THESE ISSUES. 2093 01:33:48,080 --> 01:33:49,440 >>WE HAVE THE OPPORTUNITY TO 2094 01:33:49,440 --> 01:33:54,720 DISCUSS WITH YOU LAST JUNE 2095 01:33:54,720 --> 01:33:55,280 WHERE WE ARE GOING WITH THE 2096 01:33:55,280 --> 01:33:55,880 ROLLOUT AND IMPLEMENTATION OF 2097 01:33:55,880 --> 01:33:57,160 THE DATA MANAGEMENT SHARING 2098 01:33:57,160 --> 01:33:57,400 POLICY. 2099 01:33:57,400 --> 01:34:00,960 AS HAS BEEN POINTED OUT THERE 2100 01:34:00,960 --> 01:34:02,080 HAS BEEN TREMENDOUS AMOUNT OF 2101 01:34:02,080 --> 01:34:04,520 OUTREACH THE LAST FEW MONTHS 2102 01:34:04,520 --> 01:34:10,600 DOZENS OF TALKS AND WEBINARS 2103 01:34:10,600 --> 01:34:11,120 ATTENDED BY 5000 PEOPLE A 2104 01:34:11,120 --> 01:34:11,320 PIECE. 2105 01:34:11,320 --> 01:34:11,880 LOTS OF GOOD QUESTIONS THAT 2106 01:34:11,880 --> 01:34:18,880 HAVE COME IN. 2107 01:34:18,880 --> 01:34:21,040 THE WEBSITE WE CONTINUE TO 2108 01:34:21,040 --> 01:34:26,320 MAINTAIN THAT AS A LIVING SITE 2109 01:34:26,320 --> 01:34:26,920 SO ONE OF THE ITEMS WE JUST 2110 01:34:26,920 --> 01:34:34,120 PUT UP OUR SAMPLE PLANS AND WE 2111 01:34:34,120 --> 01:34:34,640 ANTICIPATE PUTTING UP MORE 2112 01:34:34,640 --> 01:34:35,240 OVER TIME AS WE SEE MORE AND 2113 01:34:35,240 --> 01:34:38,200 MORE GOOD EXAMPLES. 2114 01:34:38,200 --> 01:34:41,400 A VERY EXCITING PROJECT GOING 2115 01:34:41,400 --> 01:34:46,400 ON WITH THE FTP THIS IS A 2116 01:34:46,400 --> 01:34:50,440 LONG-STANDING ONGOING PROJECT 2117 01:34:50,440 --> 01:34:51,000 WE HAVE BEEN WORKING ON WITH 2118 01:34:51,000 --> 01:34:55,280 THE NATIONAL ACADEMIES. 2119 01:34:55,280 --> 01:34:56,600 THINKING ABOUT WAYS TO DEVELOP 2120 01:34:56,600 --> 01:35:01,560 DATA MANAGEMENT AND SHARING 2121 01:35:01,560 --> 01:35:02,640 THAT IS STRUCTURED AND EASY TO 2122 01:35:02,640 --> 01:35:07,360 PUT TOGETHER AND WHERE THEY 2123 01:35:07,360 --> 01:35:10,360 COULD BE MORE EASILY ANALYZED 2124 01:35:10,360 --> 01:35:15,000 AND ACCESSIBLE. 2125 01:35:15,000 --> 01:35:16,440 SO WE HAVE A JOINT GROUP OF 2126 01:35:16,440 --> 01:35:18,440 PEOPLE FROM ACADEMIA AND 2127 01:35:18,440 --> 01:35:22,880 ADMINISTRATORS AND OUR OWN 2128 01:35:22,880 --> 01:35:23,480 STAFF WORKING ON DEVELOPING 2129 01:35:23,480 --> 01:35:29,720 VARIOUS STRUCTURE TYPES OF 2130 01:35:29,720 --> 01:35:30,720 DATA MANAGEMENT PLANS WITH THE 2131 01:35:30,720 --> 01:35:32,520 EFFORTS TO TEST DRIVE THEM TO 2132 01:35:32,520 --> 01:35:34,920 SEE HOW WELL THEY WORK AND 2133 01:35:34,920 --> 01:35:37,600 THIS STARTED A FEW MONTHS AGO 2134 01:35:37,600 --> 01:35:39,160 AND WE ANTICIPATE WILL GO ON 2135 01:35:39,160 --> 01:35:43,000 FOR AT LEAST ANOTHER FOUR 2136 01:35:43,000 --> 01:35:45,040 THROUGH SIX MONTHS IF NOT 2137 01:35:45,040 --> 01:35:45,280 LONGER. 2138 01:35:45,280 --> 01:35:52,200 THE LAST THING I WILL MENTION 2139 01:35:52,200 --> 01:35:52,680 SEEING ENGAGEMENT BY THE 2140 01:35:52,680 --> 01:35:54,040 COMMUNITY ITSELF IN ONE 2141 01:35:54,040 --> 01:35:58,120 EXAMPLE THAT WAS PUBLISHED A 2142 01:35:58,120 --> 01:35:59,880 MONTH OR TWO AGO MAYBE TWO 2143 01:35:59,880 --> 01:36:04,800 MONTHS AGO THAT WAS ENTITLED 2144 01:36:04,800 --> 01:36:08,960 TEN SIMPLE RULES FOR 2145 01:36:08,960 --> 01:36:13,280 IMPLEMENTING THE SHARING 2146 01:36:13,280 --> 01:36:13,800 POLICIES. 2147 01:36:13,800 --> 01:36:15,880 A PAPER WAS PUT TOGETHER BY 2148 01:36:15,880 --> 01:36:21,600 LIBRARIANS AND IT IS A NICE 2149 01:36:21,600 --> 01:36:25,120 PIECE. 2150 01:36:25,120 --> 01:36:26,560 AND EVEN THOUGH IT'S WRITTEN 2151 01:36:26,560 --> 01:36:29,120 TO SPECIFIC IT IS APPLICABLE 2152 01:36:29,120 --> 01:36:31,880 TO VIRTUALLY ALL SITES. 2153 01:36:31,880 --> 01:36:37,320 THINKS ONE —- THANK YOU. 2154 01:36:37,320 --> 01:36:45,760 >>I KNOW SUSAN WAS NOT 2155 01:36:45,760 --> 01:36:46,360 AVAILABLE TODAY AND I KNOW YOU 2156 01:36:46,360 --> 01:36:46,960 HAVE A BUNCH OF QUESTIONS BUT 2157 01:36:46,960 --> 01:36:57,360 I SEE TWO HANDS SO FAR. 2158 01:36:58,720 --> 01:36:59,320 >>THANK YOU EVERYONE THIS IS 2159 01:36:59,320 --> 01:36:59,920 AMAZING WORK AND I CANNOT TELL 2160 01:36:59,920 --> 01:37:05,720 YOU HOW INFLUENTIAL IT CAN BE 2161 01:37:05,720 --> 01:37:06,560 BETWEEN MACHINE LEARNING AND 2162 01:37:06,560 --> 01:37:10,920 BIOMEDICAL RESEARCH. 2163 01:37:10,920 --> 01:37:19,760 I HAVE TWO QUESTIONS AND 2164 01:37:19,760 --> 01:37:22,840 COMMENTS. 2165 01:37:22,840 --> 01:37:23,440 FROM MY EXPERIENCE COMING FROM 2166 01:37:23,440 --> 01:37:28,360 THE OTHER SIDE OF THE DATA IN 2167 01:37:28,360 --> 01:37:30,840 TERMS OF MACHINE LEARNING AND 2168 01:37:30,840 --> 01:37:34,440 RESEARCHERS I THINK THE MOST 2169 01:37:34,440 --> 01:37:41,320 HELPFUL DATA IS MEASUREMENT 2170 01:37:41,320 --> 01:37:41,880 DATA. 2171 01:37:41,880 --> 01:37:44,920 IT DOES NOT HAVE A HUMAN ENTRY 2172 01:37:44,920 --> 01:37:50,720 BUT LET ME GIVE YOU EXAMPLES. 2173 01:37:50,720 --> 01:37:51,360 EXAMPLES OF SEQUENCING DATA 2174 01:37:51,360 --> 01:37:54,280 LIKE GENOMIC DATA LESSON 2175 01:37:54,280 --> 01:37:58,480 SOMEBODY SAYING IF THEY HAVE A 2176 01:37:58,480 --> 01:38:04,760 PARTICULAR SEQUENCE OR NOT EEG 2177 01:38:04,760 --> 01:38:09,640 DATA, PSG DATA AND AS AN 2178 01:38:09,640 --> 01:38:15,480 AMAZING RESOURCE WHO HAS PSG 2179 01:38:15,480 --> 01:38:20,920 DATA SET FOR ME AND ANOTHER 2180 01:38:20,920 --> 01:38:23,760 RESEARCHER JUST TO GIVE YOU AN 2181 01:38:23,760 --> 01:38:29,840 IDEA MAY HAVE JUST A FEW 2182 01:38:29,840 --> 01:38:40,360 MONTHS AGO BASED ON DATA FROM 2183 01:38:40,600 --> 01:38:41,680 THE RESOURCE IN ADDITION TO 2184 01:38:41,680 --> 01:38:47,320 OTHER COLLECTIVE DATA AND STOP 2185 01:38:47,320 --> 01:38:50,920 THAT FROM NOCTURNAL BLEEDING 2186 01:38:50,920 --> 01:38:54,960 YOU WOULDN'T THINK IT IS 2187 01:38:54,960 --> 01:38:56,920 POSSIBLE THAT THEN YOU 2188 01:38:56,920 --> 01:38:57,360 DISCOVER NEW THINGS. 2189 01:38:57,360 --> 01:39:00,080 I GIVE YOU THIS AS AN EXAMPLE 2190 01:39:00,080 --> 01:39:01,520 OF THE POWER OF THE DATA 2191 01:39:01,520 --> 01:39:05,000 COMING DIRECTLY FROM PATIENTS 2192 01:39:05,000 --> 01:39:06,280 I WOULD LOVE TO HEAR FROM YOU 2193 01:39:06,280 --> 01:39:08,760 HOW MUCH EMPHASIS IS GIVEN TO 2194 01:39:08,760 --> 01:39:12,160 THAT AND I ENCOURAGE YOU TO 2195 01:39:12,160 --> 01:39:19,080 THINK OF THE DATA AND ALSO ON 2196 01:39:19,080 --> 01:39:25,120 THE TSG VERY IMPORTANT IT 2197 01:39:25,120 --> 01:39:25,640 COULD BE ONE CLASS OF DATA 2198 01:39:25,640 --> 01:39:27,920 THEN SEQUENCING THE IMAGING 2199 01:39:27,920 --> 01:39:33,200 DATA THAT IS AMAZINGLY HELPFUL. 2200 01:39:33,200 --> 01:39:36,560 >>I WILL START. 2201 01:39:36,560 --> 01:39:39,600 THIS IS SPOT ON AND ONE 2202 01:39:39,600 --> 01:39:42,080 EXAMPLE I HAD THE OPPORTUNITY 2203 01:39:42,080 --> 01:39:43,200 TO WORK ON A NUMBER OF YEARS 2204 01:39:43,200 --> 01:39:46,880 AGO TO COMBINE DATA WHICH IS 2205 01:39:46,880 --> 01:39:49,600 THE PROJECTS WITH MULTIPLE 2206 01:39:49,600 --> 01:39:52,160 TRIALS IN A HIGHLY SYSTEMATIC 2207 01:39:52,160 --> 01:39:55,160 WAY AND ALL THE WOMEN INVOLVED 2208 01:39:55,160 --> 01:40:01,000 IN THOSE STUDIES I AM A 2209 01:40:01,000 --> 01:40:03,920 CARDIOLOGIST SO THIS GETS ME 2210 01:40:03,920 --> 01:40:04,360 EXCITED. 2211 01:40:04,360 --> 01:40:09,680 EACH ELECTROCARDIOGRAM HAD 2212 01:40:09,680 --> 01:40:10,240 SOMEWHERE BETWEEN 501,000 2213 01:40:10,240 --> 01:40:16,000 PIECES OF DATA ALONG WITH IT 2214 01:40:16,000 --> 01:40:16,480 SO WE USE SOME MACHINE 2215 01:40:16,480 --> 01:40:17,040 LEARNING METHODS TO COMBINE 2216 01:40:17,040 --> 01:40:22,440 THE ECG DATA ALONG WITH THE 2217 01:40:22,440 --> 01:40:24,080 VAST AMOUNTS OF CLINICAL DATA 2218 01:40:24,080 --> 01:40:25,120 COLLECTED SO ONE OF THE THINGS 2219 01:40:25,120 --> 01:40:30,920 WE FOUND IS THAT VARIABILITY 2220 01:40:30,920 --> 01:40:31,480 AS DISCOVERED ON ONE MINUTE 2221 01:40:31,480 --> 01:40:34,920 ECG AT THE MOST POWERFUL 2222 01:40:34,920 --> 01:40:38,960 PREDICTOR OF LONG-TERM AND IT 2223 01:40:38,960 --> 01:40:41,800 DOES MAKE SENSE SO I THINK 2224 01:40:41,800 --> 01:40:45,680 YOUR COMMENT IS SPOT ON FOR 2225 01:40:45,680 --> 01:40:49,200 FURTHER WORK. 2226 01:40:49,200 --> 01:40:50,720 >>I DO WANT TO ADD ONE SMALL 2227 01:40:50,720 --> 01:40:55,320 RELATED THING I ENCOURAGE YOU 2228 01:40:55,320 --> 01:40:56,240 TO FOCUS ON THE CLINICAL PAST 2229 01:40:56,240 --> 01:41:03,720 DATA FIRST BECAUSE WE ALL 2230 01:41:03,720 --> 01:41:04,200 THINK WEARABLE DATA IS 2231 01:41:04,200 --> 01:41:04,800 AMAZINGLY HELPFUL AND WILL 2232 01:41:04,800 --> 01:41:06,120 CHANGE THINGS BUT EFFECTIVELY 2233 01:41:06,120 --> 01:41:08,520 WE HAVE BEEN WEARING DATA WITH 2234 01:41:08,520 --> 01:41:13,040 GOOGLE AND APPLE AND ALL THE 2235 01:41:13,040 --> 01:41:14,440 BIG TECH COMPANIES FOR MORE 2236 01:41:14,440 --> 01:41:18,720 THAN A DECADE. 2237 01:41:18,720 --> 01:41:19,280 AND NOT MUCH HAS COME OUT OF 2238 01:41:19,280 --> 01:41:26,240 IT AND THE REASON IS THE NOISE 2239 01:41:26,240 --> 01:41:26,840 IN COMPARISON TO THE SIGNAL IS 2240 01:41:26,840 --> 01:41:27,080 VERY HIGH. 2241 01:41:27,080 --> 01:41:30,080 IN COMPARISON TO CLINICAL DATA 2242 01:41:30,080 --> 01:41:36,000 THAT EEG AND MRI THAT DATA 2243 01:41:36,000 --> 01:41:46,520 SIGNAL TO NOISE IS VERY HIGH. 2244 01:41:48,760 --> 01:41:49,280 >>IF I COULD COMMENT ON THREE 2245 01:41:49,280 --> 01:41:49,880 CRITICAL PIECES BUT THIS IS AN 2246 01:41:49,880 --> 01:41:50,400 EXAMPLE WHERE METADATA IS 2247 01:41:50,400 --> 01:41:52,280 EXTREMELY IMPORTANT BECAUSE 2248 01:41:52,280 --> 01:41:54,440 THE MACHINE CAPTURING THE DATA 2249 01:41:54,440 --> 01:41:58,040 CAN ALTER THE INTERPRETABILITY 2250 01:41:58,040 --> 01:42:00,960 SO WE LOOK FORWARD TO HOW TO 2251 01:42:00,960 --> 01:42:06,520 PROPERLY CHARACTERIZE SO WE 2252 01:42:06,520 --> 01:42:09,600 NEED TO KNOW THE MAKE AND THE 2253 01:42:09,600 --> 01:42:10,920 MODEL. 2254 01:42:10,920 --> 01:42:12,280 THAT LEADS TO THE SECOND PART 2255 01:42:12,280 --> 01:42:18,680 OF THE JOURNEY WE NEED TO 2256 01:42:18,680 --> 01:42:19,280 UNDERSTAND TO WHAT EXTENT IS 2257 01:42:19,280 --> 01:42:19,840 THE RAW DATA APPROPRIATE TO 2258 01:42:19,840 --> 01:42:22,880 PRESERVE AS OPPOSED TO A 2259 01:42:22,880 --> 01:42:26,960 SPECIFIC FINDING IN A RESEARCH 2260 01:42:26,960 --> 01:42:27,840 STUDY? 2261 01:42:27,840 --> 01:42:28,400 WE DON'T HAVE THOSE ANSWERS 2262 01:42:28,400 --> 01:42:32,760 AND MANY STRATEGIES TO LOOK AT 2263 01:42:32,760 --> 01:42:35,440 LOOKING AT THE SIZE OF DATA 2264 01:42:35,440 --> 01:42:35,720 RESOURCES. 2265 01:42:35,720 --> 01:42:41,360 SO WE LEARN THROUGH OUR 2266 01:42:41,360 --> 01:42:42,000 COMMITTEE HAVING SEVERAL 2267 01:42:42,000 --> 01:42:48,520 COMMUNITY MEMBER ENGAGEMENTS 2268 01:42:48,520 --> 01:42:49,120 PEOPLE ARE WILLING TO HAVE THE 2269 01:42:49,120 --> 01:42:49,800 DATA SHARED BUT THEY WANT TO 2270 01:42:49,800 --> 01:42:56,360 UNDERSTAND HOW IT WILL BE USED 2271 01:42:56,360 --> 01:42:56,840 AND THE POTENTIAL FOR 2272 01:42:56,840 --> 01:42:57,400 INADVERTENT IDENTIFICATION 2273 01:42:57,400 --> 01:42:58,000 FROM SOME OF THE SIGNAL DATA 2274 01:42:58,000 --> 01:42:58,440 IS NOT SMALL. 2275 01:42:58,440 --> 01:43:02,000 IT'S CRITICAL THE NIH ENGAGE 2276 01:43:02,000 --> 01:43:05,560 WITH DATA FOCUSED RESEARCH TO 2277 01:43:05,560 --> 01:43:07,320 LOOK AT ETHICAL WAYS TO 2278 01:43:07,320 --> 01:43:08,840 PRESERVE PATIENT PRIVACY. 2279 01:43:08,840 --> 01:43:13,000 THANK YOU. 2280 01:43:13,000 --> 01:43:14,000 >>LET ME KNOW IF THERE IS 2281 01:43:14,000 --> 01:43:16,480 ANYWAY I CAN HELP THANK YOU 2282 01:43:16,480 --> 01:43:16,680 AGAIN. 2283 01:43:16,680 --> 01:43:24,320 THIS IS AMAZING. 2284 01:43:24,320 --> 01:43:28,800 >>MY QUESTION IS ABOUT OPEN 2285 01:43:28,800 --> 01:43:34,480 ACCESS PUBLICATION AND OTHER 2286 01:43:34,480 --> 01:43:40,280 INSTITUTIONS ACROSS THE WORLD 2287 01:43:40,280 --> 01:43:42,960 BUT DO YOU HAVE ANY DATA FROM 2288 01:43:42,960 --> 01:43:46,320 THE OPEN ACCESS FEES? 2289 01:43:46,320 --> 01:43:50,520 AND THE REASON I'M ASKING 2290 01:43:50,520 --> 01:43:52,560 THERE IS A SUBSTANTIAL 2291 01:43:52,560 --> 01:43:56,120 ESCALATION THAT WE ARE PAYING 2292 01:43:56,120 --> 01:43:57,880 A LOT OF MONEY TO SUPPORT 2293 01:43:57,880 --> 01:44:00,520 PUBLISHING BUT IT IS AT THE 2294 01:44:00,520 --> 01:44:01,560 EXPENSE I THINK IF WE DON'T 2295 01:44:01,560 --> 01:44:04,480 HAVE GREAT FUNDING A FOUR OR 2296 01:44:04,480 --> 01:44:08,480 $5000 TO GET THE PAPER 2297 01:44:08,480 --> 01:44:10,760 PUBLISHED DOESN'T MAKE THAT 2298 01:44:10,760 --> 01:44:11,240 ACCESSIBLE SO HOW ARE WE 2299 01:44:11,240 --> 01:44:14,440 THINKING ABOUT THAT? 2300 01:44:14,440 --> 01:44:18,920 >>I WILL DO FOR THE COST 2301 01:44:18,920 --> 01:44:20,080 CONVERSATION TO THOSE WHO RUN 2302 01:44:20,080 --> 01:44:22,240 THIS BY DOING TO EMPHASIZE YOU 2303 01:44:22,240 --> 01:44:28,000 UNDERSTAND THE NUANCE WE SAY 2304 01:44:28,000 --> 01:44:32,240 THE PUBLIC ACCESS POLICY THAT 2305 01:44:32,240 --> 01:44:39,000 IS NOT OUR POSITION TO DICTATE 2306 01:44:39,000 --> 01:44:42,000 SO OUR POLICIES ARE ABOUT 2307 01:44:42,000 --> 01:44:46,200 ACCESS AND WITHIN PUBMED 2308 01:44:46,200 --> 01:44:50,480 CENTRAL FROM THE INVESTIGATOR 2309 01:44:50,480 --> 01:44:51,040 OR THE JOURNAL PUBLISHER. 2310 01:44:51,040 --> 01:44:54,160 SO IN TERMS OF PUBLIC ACCESS 2311 01:44:54,160 --> 01:45:00,880 BUT IN TERMS OF OPEN ACCESS 2312 01:45:00,880 --> 01:45:01,480 AND WITH THAT COST I WILL TURN 2313 01:45:01,480 --> 01:45:12,120 IT OVER TO PATTY AND MIKE. 2314 01:45:12,120 --> 01:45:15,000 >>WE DO ALLOW OPEN ACCESS 2315 01:45:15,000 --> 01:45:17,000 COST. 2316 01:45:17,000 --> 01:45:18,080 WE DON'T HAVE THAT AS A 2317 01:45:18,080 --> 01:45:21,280 STRUCTURED DATA FIELD BUT IT 2318 01:45:21,280 --> 01:45:22,880 DOES REPRESENT A RELATIVELY 2319 01:45:22,880 --> 01:45:30,400 SMALL PROPORTION OF COST. 2320 01:45:30,400 --> 01:45:31,320 PATTY CAN EXPAND THAT OUR 2321 01:45:31,320 --> 01:45:31,920 UNDERSTANDING IS A VERY LARGE 2322 01:45:31,920 --> 01:45:34,360 PORTION OF NIH PUBLICATIONS 2323 01:45:34,360 --> 01:45:37,320 ARE OPEN ACCESS SO THIS IS 2324 01:45:37,320 --> 01:45:41,200 ALREADY PART OF THE EXISTING. 2325 01:45:41,200 --> 01:45:44,240 >>YES ALL NIH PUBLICATIONS 2326 01:45:44,240 --> 01:45:49,800 RESEARCH-BASED SUBMITTED TO 2327 01:45:49,800 --> 01:45:50,320 PUBMED CENTRAL EITHER AS A 2328 01:45:50,320 --> 01:45:55,000 MANUSCRIPT RESIN AUTHOR 2329 01:45:55,000 --> 01:45:58,920 SUBMITTED MANUSCRIPT AND IT IS 2330 01:45:58,920 --> 01:46:02,880 APPROXIMATELY ONE THIRD OF THE 2331 01:46:02,880 --> 01:46:06,000 MANUSCRIPT COMING UP NOW 2332 01:46:06,000 --> 01:46:06,600 THROUGH OPEN ACCESS JOURNALS. 2333 01:46:06,600 --> 01:46:12,280 IT ALSO INCLUDES A NUMBER OF 2334 01:46:12,280 --> 01:46:13,760 THE MEMBERS OF PUBMED CENTRAL 2335 01:46:13,760 --> 01:46:16,720 FOR THE HIGH QUALITY OPEN 2336 01:46:16,720 --> 01:46:24,200 ACCESS THAT FUNDAMENTALLY FROM 2337 01:46:24,200 --> 01:46:27,240 THE SCIENTIFIC COMMUNICATION 2338 01:46:27,240 --> 01:46:31,560 PROCESS WORKING THROUGH OUR 2339 01:46:31,560 --> 01:46:32,960 FRIENDS TO MEET WITH THE 2340 01:46:32,960 --> 01:46:38,040 PUBLISHING COMMUNITY TO 2341 01:46:38,040 --> 01:46:38,560 EXCHANGE IDEAS WE ALL KNOW 2342 01:46:38,560 --> 01:46:43,960 THAT CONCERNS AND HOW RADICAL 2343 01:46:43,960 --> 01:46:45,920 THAT SEEMS BUT YET WE DON'T 2344 01:46:45,920 --> 01:46:47,760 WANT TO REMOVE THE OPPORTUNITY 2345 01:46:47,760 --> 01:46:50,880 FOR THE BUSINESS YOU WANT THE 2346 01:46:50,880 --> 01:46:52,160 PARTNERSHIP FOR WHAT WE 2347 01:46:52,160 --> 01:46:58,360 CURRENTLY HAVE. 2348 01:46:58,360 --> 01:46:59,040 >>THAT'S GREAT AND WHAT I 2349 01:46:59,040 --> 01:47:02,840 ANTICIPATED HEARING THOSE FEES 2350 01:47:02,840 --> 01:47:06,080 ARE PROBABLY SMALL FROM NON- 2351 01:47:06,080 --> 01:47:10,920 GRANT FUNDED RESEARCH SO THAT 2352 01:47:10,920 --> 01:47:14,520 IS SOMETHING TO KEEP IN MIND 2353 01:47:14,520 --> 01:47:17,600 BECAUSE YOU HAVE SO MUCH 2354 01:47:17,600 --> 01:47:20,240 IMPACT ABOUT THE BALANCE 2355 01:47:20,240 --> 01:47:22,360 BETWEEN THE TWO. 2356 01:47:22,360 --> 01:47:26,960 >>THERE IS ANALYSIS AND HOW 2357 01:47:26,960 --> 01:47:27,800 THAT IS DISPROPORTIONATELY 2358 01:47:27,800 --> 01:47:33,840 USED WITH AGENDAS OF THIS IS 2359 01:47:33,840 --> 01:47:34,840 WHY WE DIDN'T COME OUT WITH A 2360 01:47:34,840 --> 01:47:37,320 BRAND-NEW POLICY BUT THEN TO 2361 01:47:37,320 --> 01:47:42,880 UNDERSTAND THOSE MEASURES SO 2362 01:47:42,880 --> 01:47:45,720 THAT'S WHERE WE WILL REALLY BE 2363 01:47:45,720 --> 01:47:56,160 LOOKING TO ENSURE EQUITY. 2364 01:47:58,560 --> 01:48:00,440 >>SO MY QUESTION HAS THREE 2365 01:48:00,440 --> 01:48:10,320 COMPONENTS. 2366 01:48:10,320 --> 01:48:11,280 SO THE DATA WITH 500 OR 1000 2367 01:48:11,280 --> 01:48:21,040 DATA POINTS, SO THE AMOUNT OF 2368 01:48:21,040 --> 01:48:23,000 DATA WE ARE COLLECTING IS 2369 01:48:23,000 --> 01:48:30,480 MASSIVE. 2370 01:48:30,480 --> 01:48:33,960 SO HOW ARE WE STORING DATA OR 2371 01:48:33,960 --> 01:48:34,480 MOVING THAT AROUND OR 2372 01:48:34,480 --> 01:48:37,760 ACCESSING THAT? 2373 01:48:37,760 --> 01:48:45,880 HOW LONG SHOULD IT STAY AROUND 2374 01:48:45,880 --> 01:48:46,720 AND DOES THE REST OF THE DATA 2375 01:48:46,720 --> 01:48:51,680 GO ONLINE? 2376 01:48:51,680 --> 01:48:52,240 WITH THAT ORIGINAL DATA AND 2377 01:48:52,240 --> 01:48:52,640 HOW MUCH ACCESS. 2378 01:48:52,640 --> 01:49:00,360 BUT THE SECOND QUESTION EVEN 2379 01:49:00,360 --> 01:49:01,400 THINKING OF MY OWN LAB I'VE 2380 01:49:01,400 --> 01:49:06,640 GONE BACK THE LAST FEW YEARS 2381 01:49:06,640 --> 01:49:07,240 SO THE IDEA THAT A POSTDOC 2382 01:49:07,240 --> 01:49:12,240 COULD COLLECT A SERIES OF DATA 2383 01:49:12,240 --> 01:49:12,800 TO NAVIGATING ISSUES DO WE 2384 01:49:12,800 --> 01:49:16,640 NAME THAT FRONTAL CORTEX QUICK 2385 01:49:16,640 --> 01:49:19,120 SO GIVEN THE IDEAS TO HAVE A 2386 01:49:19,120 --> 01:49:26,360 COMMUNITY STANDARD HOW WE 2387 01:49:26,360 --> 01:49:26,880 THINKING OF BUILDING AND 2388 01:49:26,880 --> 01:49:30,640 ORGANIZING DATA HOW DO WE 2389 01:49:30,640 --> 01:49:31,560 THINK ABOUT DEVELOPING THOSE 2390 01:49:31,560 --> 01:49:37,480 COMMUNITY STANDARDS AND HOW 2391 01:49:37,480 --> 01:49:38,880 THIS IMPACTS YOUNG SCIENTIST 2392 01:49:38,880 --> 01:49:39,320 AND TRAINEES QUICK. 2393 01:49:39,320 --> 01:49:49,800 >>SO WE REALIZE IT'S USEFUL 2394 01:49:50,160 --> 01:49:51,120 SO DO WE ASKED THOSE 2395 01:49:51,120 --> 01:49:55,080 EXPERIMENTAL QUESTIONS SO 2396 01:49:55,080 --> 01:49:56,560 THAT'S ALL WRAPPED INTO THE 2397 01:49:56,560 --> 01:50:06,120 SAME DATA SET AND THEN TO 2398 01:50:06,120 --> 01:50:08,960 ANALYZE THAT IN A SECOND WAY 2399 01:50:08,960 --> 01:50:10,200 SO WHAT DOES IT MEAN IF WE 2400 01:50:10,200 --> 01:50:13,760 SHARE THAT DATA AND THAT 2401 01:50:13,760 --> 01:50:17,400 IMPACT DOES THIS INCENTIVIZE 2402 01:50:17,400 --> 01:50:21,800 US TO KEEP IT SEGMENTED EARLY 2403 01:50:21,800 --> 01:50:26,240 ON SO HELPING INVESTIGATORS 2404 01:50:26,240 --> 01:50:29,240 AND YOUNG SCIENTIST. 2405 01:50:29,240 --> 01:50:33,240 >>I WILL TAKE A STAB THESE 2406 01:50:33,240 --> 01:50:37,360 ARE GRAY'S QUESTIONS BUT 2407 01:50:37,360 --> 01:50:39,240 SHARING DATA PRESENTS 2408 01:50:39,240 --> 01:50:41,680 TREMENDOUS OPPORTUNITIES AND I 2409 01:50:41,680 --> 01:50:46,560 HAD THE OPPORTUNITY 25 YEARS 2410 01:50:46,560 --> 01:50:51,960 AGO TO TAKE ADVANTAGE AND TO 2411 01:50:51,960 --> 01:50:52,480 GET SOME INTERESTING WORK 2412 01:50:52,480 --> 01:50:55,240 PUBLISHED AT A TIME FROM OUR 2413 01:50:55,240 --> 01:50:58,080 OWN RESEARCH PROGRAM AND ALSO 2414 01:50:58,080 --> 01:51:04,040 TO SEE THE DATA THAT'S PUT 2415 01:51:04,040 --> 01:51:04,640 TOGETHER AND THAT WOULD BE A 2416 01:51:04,640 --> 01:51:06,600 GOOD EXAMPLE FOR US. 2417 01:51:06,600 --> 01:51:11,160 THAT'S ANOTHER REALLY GOOD 2418 01:51:11,160 --> 01:51:13,400 POINT MAKING DATA AVAILABLE 2419 01:51:13,400 --> 01:51:13,880 PRESENTS A TREMENDOUS 2420 01:51:13,880 --> 01:51:16,520 OPPORTUNITY FOR EARLY CAREER 2421 01:51:16,520 --> 01:51:16,840 INVESTIGATORS. 2422 01:51:16,840 --> 01:51:23,640 ON A TOTALLY DIFFERENT TOPIC 2423 01:51:23,640 --> 01:51:25,160 THERE ARE A WIDE VARIETY OF 2424 01:51:25,160 --> 01:51:25,720 REPOSITORY MODELS AVAILABLE 2425 01:51:25,720 --> 01:51:29,640 RANGING FROM PUBMED CENTRAL 2426 01:51:29,640 --> 01:51:35,520 FOR RELATIVELY SMALL DATA SETS 2427 01:51:35,520 --> 01:51:37,960 OR METADATA SO THAT STRIDES 2428 01:51:37,960 --> 01:51:40,280 INITIATIVE HAS BEEN 2429 01:51:40,280 --> 01:51:44,800 SPEARHEADED THAT ENABLES 2430 01:51:44,800 --> 01:51:47,600 PEOPLE TO PUT THOSE METADATA 2431 01:51:47,600 --> 01:51:51,120 SETS AND ACCESS INTO 2432 01:51:51,120 --> 01:51:54,880 SUPERCOMPUTING AND FACILITIES 2433 01:51:54,880 --> 01:51:59,080 AND EXPERTISE. 2434 01:51:59,080 --> 01:52:00,360 WHAT YOU ARE POINTING OUT AS 2435 01:52:00,360 --> 01:52:02,840 THIS EVOLVES OVER TIME WE WANT 2436 01:52:02,840 --> 01:52:09,960 THE SET UP IN SUCH A WAY. 2437 01:52:09,960 --> 01:52:13,000 >>I'D BE WILLING TO TAKE THIS 2438 01:52:13,000 --> 01:52:14,720 OFF-LINE. 2439 01:52:14,720 --> 01:52:15,320 WORKING SPECIFICALLY AROUND 2440 01:52:15,320 --> 01:52:20,440 THE INITIATIVE BECAUSE WHAT 2441 01:52:20,440 --> 01:52:23,400 HAPPENS WILL BE PHENOMENAL. 2442 01:52:23,400 --> 01:52:31,000 THREE KEY POINTS AND TO MAKE 2443 01:52:31,000 --> 01:52:41,240 BETTER WAYS TO ORGANIZE DATA 2444 01:52:41,240 --> 01:52:41,840 SO IF THEY CALL IT FRONTAL 2445 01:52:41,840 --> 01:52:44,320 WHATEVER WE CAN SAY THEY ARE 2446 01:52:44,320 --> 01:52:46,920 SIMILAR WITH A MUCH BETTER USE 2447 01:52:46,920 --> 01:52:47,520 OF LIBRARIANS BECAUSE DUMPING 2448 01:52:47,520 --> 01:52:50,800 EVERY PIECE OF DATA WILL LEAVE 2449 01:52:50,800 --> 01:52:54,480 US WITH THE DOWNSTREAM 2450 01:52:54,480 --> 01:52:55,040 CHALLENGE AND WE NEED TO DO 2451 01:52:55,040 --> 01:52:59,200 MUCH BETTER AT DATA HYGIENE. 2452 01:52:59,200 --> 01:53:00,560 AND THE THIRD PIECE IS AS WE 2453 01:53:00,560 --> 01:53:07,120 MOVE FORWARD IF I GIVE YOU MY 2454 01:53:07,120 --> 01:53:07,640 FLOPPY DISK IN YOU GIVE ME 2455 01:53:07,640 --> 01:53:08,240 YOURS AND NOW MEANS COMING TO 2456 01:53:08,240 --> 01:53:14,560 THE SEEMS ARE ON —- SAME SPOT 2457 01:53:14,560 --> 01:53:15,600 SO THE CONCEPT OF SHARING IS 2458 01:53:15,600 --> 01:53:16,480 GROWING. 2459 01:53:16,480 --> 01:53:21,480 THANK YOU. 2460 01:53:21,480 --> 01:53:22,880 >>THERE NEEDS TO BE SOME 2461 01:53:22,880 --> 01:53:30,160 TRAINING DONE. 2462 01:53:30,160 --> 01:53:33,560 >>THIS IS THE POINT TO 2463 01:53:33,560 --> 01:53:36,760 DEVELOP A PLAN IT DOESN'T SAY 2464 01:53:36,760 --> 01:53:40,400 SHARE YOUR DATA BUT WHERE ARE 2465 01:53:40,400 --> 01:53:42,920 THE REPOSITORIES? 2466 01:53:42,920 --> 01:53:46,880 SO THEN YOU CAN LOOK AT YOUR 2467 01:53:46,880 --> 01:53:49,080 COLLEAGUES AND WE CAN ACTUALLY 2468 01:53:49,080 --> 01:53:51,960 START COMMUNITY ALIGNMENTS AND 2469 01:53:51,960 --> 01:53:54,720 THEN THEY CAN ADOPT THEIR OWN 2470 01:53:54,720 --> 01:53:55,280 STANDARD VERSUS MANDATING A 2471 01:53:55,280 --> 01:54:01,680 STANDARD OUT OF THE GATE. 2472 01:54:01,680 --> 01:54:04,600 >>WE ARE AT TIME BUT I WANT 2473 01:54:04,600 --> 01:54:09,360 TO MAKE SURE WE DO GET TO 2474 01:54:09,360 --> 01:54:10,880 HOWARD AND BARBARA IT'S BEEN A 2475 01:54:10,880 --> 01:54:15,040 GREAT DISCUSSION WE COULD 2476 01:54:15,040 --> 01:54:16,400 SHIFT THE PRESENTATION IN A 2477 01:54:16,400 --> 01:54:18,920 FEW MINUTES AND THEN WE CAN GO 2478 01:54:18,920 --> 01:54:21,160 INTO THE LUNCH BREAK FOR LET'S 2479 01:54:21,160 --> 01:54:23,920 GO TO HOWARD NEXT. 2480 01:54:23,920 --> 01:54:27,720 >>. 2481 01:54:27,720 --> 01:54:37,200 >>AND THEN TO SHARE THAT 2482 01:54:37,200 --> 01:54:41,680 UNDERLYING DATA TREMENDOUSLY 2483 01:54:41,680 --> 01:54:43,560 POWERFUL TO PULL TOGETHER 2484 01:54:43,560 --> 01:54:46,840 EXISTING DATA SO FULL SUPPORT 2485 01:54:46,840 --> 01:54:54,600 OF THIS EFFORT WITH DIFFERENT 2486 01:54:54,600 --> 01:54:58,480 LAYERS OF ACCESS SO THE 2487 01:54:58,480 --> 01:55:02,960 DEFAULT WOULD BE THAT'S GOING 2488 01:55:02,960 --> 01:55:07,520 TO BE PUBLISHED YOU DON'T NEED 2489 01:55:07,520 --> 01:55:08,320 ANY FURTHER PERMISSION TO 2490 01:55:08,320 --> 01:55:18,920 ACCESS UNDERLYING DATA AND 2491 01:55:18,920 --> 01:55:22,280 THAT GIVES EVERYTHING DELAY 2492 01:55:22,280 --> 01:55:25,200 BUT THEN WHEN A TRANSACTION 2493 01:55:25,200 --> 01:55:30,720 HAPPENS THE INVESTIGATOR IS A 2494 01:55:30,720 --> 01:55:33,800 SIGNING OFFICIAL. 2495 01:55:33,800 --> 01:55:34,920 AND THEN THAT VOICE SLOW 2496 01:55:34,920 --> 01:55:38,960 THINGS DOWN AND WITH THOSE 2497 01:55:38,960 --> 01:55:47,960 CONCERNS ABOUT PRIVACY AND 2498 01:55:47,960 --> 01:55:48,560 ACTUALLY TO POINT OUT THAT YOU 2499 01:55:48,560 --> 01:55:51,120 ARE ALREADY THERE WERE THOSE 2500 01:55:51,120 --> 01:55:54,840 EFFORTS AND WITH THOSE PRIVACY 2501 01:55:54,840 --> 01:56:00,920 STANDARDS AND TO ASK THE 2502 01:56:00,920 --> 01:56:01,880 UNDERLYING BIOMEDICAL QUESTION 2503 01:56:01,880 --> 01:56:06,840 WITHOUT DISCLOSING IDENTITY. 2504 01:56:06,840 --> 01:56:08,840 I HOPE THOSE STANDARDS ARE 2505 01:56:08,840 --> 01:56:12,640 CONSIDERED AND THAT IS THE 2506 01:56:12,640 --> 01:56:17,680 PRIVACY PROTECTED VERSION SO I 2507 01:56:17,680 --> 01:56:19,000 THAT'S USEFUL. 2508 01:56:19,000 --> 01:56:26,200 >>WITH RESPECT TO HOW WE MOVE 2509 01:56:26,200 --> 01:56:30,640 FORWARD, WE NEED TO UNDERSTAND 2510 01:56:30,640 --> 01:56:33,720 COMMUNITY RESOURCE DRIVEN THE 2511 01:56:33,720 --> 01:56:37,080 IDEA WITH THE INVESTIGATOR 2512 01:56:37,080 --> 01:56:37,600 COLLECTING THE DATA IN THE 2513 01:56:37,600 --> 01:56:42,480 FIRST PLACE WE ARE HOPING TO 2514 01:56:42,480 --> 01:56:43,440 PROMOTE ALL LANGUAGE AND 2515 01:56:43,440 --> 01:56:50,960 CONSENT FORMS AND SECONDLY WE 2516 01:56:50,960 --> 01:56:54,560 WILL DO EVERYTHING TO PROTECT 2517 01:56:54,560 --> 01:57:00,960 THE IDENTITY OF AN INDIVIDUAL 2518 01:57:00,960 --> 01:57:03,960 AND THEN TO ESTABLISH RACIAL 2519 01:57:03,960 --> 01:57:09,280 IDENTITY. 2520 01:57:09,280 --> 01:57:12,280 AND THAT IS A LOOK AT NEW 2521 01:57:12,280 --> 01:57:17,600 ALGORITHMS. 2522 01:57:17,600 --> 01:57:18,120 TO PUT IT DISTRIBUTED A 2523 01:57:18,120 --> 01:57:18,680 FASHION SO THAT DATA DOESN'T 2524 01:57:18,680 --> 01:57:19,440 HAVE TO BE COLLECTED. 2525 01:57:19,440 --> 01:57:21,880 THANK YOU. 2526 01:57:21,880 --> 01:57:25,840 >>JUST TO ADD IT'S WORTH 2527 01:57:25,840 --> 01:57:28,760 MENTIONING TO THOSE LISTENING 2528 01:57:28,760 --> 01:57:33,280 WE HAVE DEVELOPED A CONSENT 2529 01:57:33,280 --> 01:57:38,880 RESOURCE TO HELP DEVELOP 2530 01:57:38,880 --> 01:57:39,840 CONSENT LANGUAGE FOR DATA 2531 01:57:39,840 --> 01:57:42,880 SHARING. 2532 01:57:42,880 --> 01:57:46,080 AND THAT'S ALSO FOR TO HELP 2533 01:57:46,080 --> 01:57:51,960 WITH BEST PRACTICES. 2534 01:57:51,960 --> 01:57:52,800 >>AND ALSO LOOK AT WHAT 2535 01:57:52,800 --> 01:57:55,560 CONSENT LOOKS LIKE AND SHARING 2536 01:57:55,560 --> 01:58:02,360 IT COULDN'T BE MORE IMPORTANT. 2537 01:58:02,360 --> 01:58:05,440 WE THEN TALK ABOUT BOILING THE 2538 01:58:05,440 --> 01:58:15,080 OCEAN IT COVER SO MUCH GROUND 2539 01:58:15,080 --> 01:58:21,320 AND THEN TO EMPHASIZE SO WE 2540 01:58:21,320 --> 01:58:22,760 ARE TOTALLY AWARE AND TALKED 2541 01:58:22,760 --> 01:58:27,080 ABOUT IT IT WITH THAT LIVED 2542 01:58:27,080 --> 01:58:29,720 EXPERIENCES OF SCIENCES BUT 2543 01:58:29,720 --> 01:58:35,840 THERE ARE RESOURCES AND THEN 2544 01:58:35,840 --> 01:58:42,840 WITH THE GENOMICS WITH THE 2545 01:58:42,840 --> 01:58:43,440 MULTIPLE KINDS OF DATA AND THE 2546 01:58:43,440 --> 01:58:49,400 BRAIN INITIATIVE BUT YET I 2547 01:58:49,400 --> 01:58:49,920 KNOW THE ONES THAT ARE THE 2548 01:58:49,920 --> 01:58:53,320 MOST SUCCESSFUL MANY 2549 01:58:53,320 --> 01:58:55,520 INSTITUTES FIND THEMSELVES 2550 01:58:55,520 --> 01:58:57,960 STRUGGLING. 2551 01:58:57,960 --> 01:59:00,160 MY RECALL INFRASTRUCTURE WE 2552 01:59:00,160 --> 01:59:03,160 HAVE A BROWSER NOW WE ARE DONE 2553 01:59:03,160 --> 01:59:05,280 BUT WITH THIS NEW KINDS OF 2554 01:59:05,280 --> 01:59:07,920 DATA AND NEW WAYS TO LOOK AT 2555 01:59:07,920 --> 01:59:11,840 IT. 2556 01:59:11,840 --> 01:59:15,120 AND THAT NEEDS A WHOLE LOT OF 2557 01:59:15,120 --> 01:59:18,240 ENGINE. 2558 01:59:18,240 --> 01:59:18,800 NATALIE TO THE INVESTIGATOR 2559 01:59:18,800 --> 01:59:22,880 BUT TO THE NIH. 2560 01:59:22,880 --> 01:59:25,760 INSTANCE TO STEP BACK WHAT 2561 01:59:25,760 --> 01:59:32,400 WILL THIS COST AND WHERE DO WE 2562 01:59:32,400 --> 01:59:32,960 PUT THE MOST MUSCLE TO GET 2563 01:59:32,960 --> 01:59:36,360 BANG FOR OUR BUCK SO THAT THE 2564 01:59:36,360 --> 01:59:39,040 END OF THE DAY THIS IS A HUGE 2565 01:59:39,040 --> 01:59:43,880 OPPORTUNITY POTENTIALLY 2566 01:59:43,880 --> 01:59:46,240 PROBLEMATIC BUT IS IT TIME FOR 2567 01:59:46,240 --> 01:59:50,840 ANOTHER STEP BACK FOR THE 2568 01:59:50,840 --> 01:59:51,840 FUTURE OF DATA SCIENCE 2569 01:59:51,840 --> 01:59:52,480 OVERALL? 2570 01:59:52,480 --> 01:59:57,440 AND THE MOMENT IT HAS BEEN TEN 2571 01:59:57,440 --> 01:59:59,720 YEARS SINCE LARRY WAS INVOLVED 2572 01:59:59,720 --> 02:00:00,800 IN THE STUDY AND THINGS HAVE 2573 02:00:00,800 --> 02:00:04,520 CHANGED A LOT AT NIH WITH DATA 2574 02:00:04,520 --> 02:00:07,480 SHARING AND SCIENCE. 2575 02:00:07,480 --> 02:00:08,760 PARTLY TO TAKE A LOOK AND WHAT 2576 02:00:08,760 --> 02:00:11,920 DO WE KNOW NOW QUICK. 2577 02:00:11,920 --> 02:00:17,160 >>I WOULD LOVE TO TURN TO 2578 02:00:17,160 --> 02:00:20,000 LARRY. 2579 02:00:20,000 --> 02:00:23,120 >>WE HAVE BEEN TALKING ABOUT 2580 02:00:23,120 --> 02:00:30,760 THIS AND HAVE REALLY MOVED 2581 02:00:30,760 --> 02:00:31,360 MORE TOWARDS PUTTING THE DATA 2582 02:00:31,360 --> 02:00:36,120 SET IN PLACE. 2583 02:00:36,120 --> 02:00:41,360 AND EVEN FIVE YEARS AGO THE 2584 02:00:41,360 --> 02:00:43,400 CLOUD -BASED APPROACHES WERE 2585 02:00:43,400 --> 02:00:47,280 ASPIRATIONAL NOW THEY ARE NOT 2586 02:00:47,280 --> 02:00:48,640 IN THE REACH OF EVERYBODY THAT 2587 02:00:48,640 --> 02:00:52,440 MANY PEOPLE. 2588 02:00:52,440 --> 02:00:57,440 >>AND THERE ARE REAL ISSUES. 2589 02:00:57,440 --> 02:01:03,560 SO PATTY AND ANDREA HAVE BEEN 2590 02:01:03,560 --> 02:01:04,520 WORKING THROUGH DIGITAL 2591 02:01:04,520 --> 02:01:10,520 STRATEGIC PLAN AND NO DOUBT 2592 02:01:10,520 --> 02:01:14,960 THAT WILL INFORM BECAUSE WE 2593 02:01:14,960 --> 02:01:17,880 OFTEN DO EXPERIMENTS ON 2594 02:01:17,880 --> 02:01:18,840 OURSELVES. 2595 02:01:18,840 --> 02:01:26,080 AND IF THE PATIENT'S IF NOT 2596 02:01:26,080 --> 02:01:28,880 THEN WE TRY WAS SOMEBODY ELSE 2597 02:01:28,880 --> 02:01:29,440 THAT CAN YOU COMMENT QUICK. 2598 02:01:29,440 --> 02:01:36,840 >>I HAVE TWO COMMENTS WE ARE 2599 02:01:36,840 --> 02:01:38,680 SEEING COMMITTED TO DEVELOPING 2600 02:01:38,680 --> 02:01:40,120 NEW KINDS OF RESOURCES NIH 2601 02:01:40,120 --> 02:01:47,440 DOES WHAT IT DOES BEST AND THE 2602 02:01:47,440 --> 02:01:50,440 COMMUNITY HAS CONNECTIONS THAT 2603 02:01:50,440 --> 02:01:55,560 ARE ABLE TO CREATE THOSE 2604 02:01:55,560 --> 02:01:58,480 ANNOTATING SETS AND THE 2605 02:01:58,480 --> 02:02:03,200 PARTNERSHIP AS A STRATEGY. 2606 02:02:03,200 --> 02:02:09,400 BUT THAT DATA STRATEGY FOR NIH 2607 02:02:09,400 --> 02:02:10,880 COMPLEMENTS THE OFFICE OF THE 2608 02:02:10,880 --> 02:02:15,040 DATA SCIENCE AS WELL AS 2609 02:02:15,040 --> 02:02:19,160 STRATEGIC DIVERSITY AND IT 2610 02:02:19,160 --> 02:02:22,120 WOULD BE RELEASED TO THE 2611 02:02:22,120 --> 02:02:26,080 PUBLIC BUT THE KEY ASPECTS 2612 02:02:26,080 --> 02:02:32,120 WERE GOVERNANCE FOR SECURE 2613 02:02:32,120 --> 02:02:34,960 COMPUTING AND WITH THAT 2614 02:02:34,960 --> 02:02:38,240 ADVANCED ANALYTICS THAT HELPS 2615 02:02:38,240 --> 02:02:40,080 OUR OPERATIONS RUN BETTER SOME 2616 02:02:40,080 --> 02:02:43,200 EXCITED TO GET YOUR FEEDBACK. 2617 02:02:43,200 --> 02:02:47,080 >>WHEN DID YOU SAY THAT IS 2618 02:02:47,080 --> 02:02:49,400 COMING? 2619 02:02:49,400 --> 02:02:54,480 >>DIGITAL NIH SOMETIME MID 2620 02:02:54,480 --> 02:02:58,360 JANUARY BUT INTERNALLY IT 2621 02:02:58,360 --> 02:02:59,440 FOCUSES ON THE EFFORTS OF THE 2622 02:02:59,440 --> 02:03:02,920 NIH TO HAVE THAT ENVIRONMENT 2623 02:03:02,920 --> 02:03:07,200 TO BRING US FORWARD. 2624 02:03:07,200 --> 02:03:11,440 IN THE CHAT WE HAVE TWO LINKS 2625 02:03:11,440 --> 02:03:14,000 WHICH IS A RESOURCE BUILT ON 2626 02:03:14,000 --> 02:03:15,720 THE COLLABORATIVE INTERFACE 2627 02:03:15,720 --> 02:03:16,600 WITH THE COMMUNITY TO BUILD 2628 02:03:16,600 --> 02:03:20,600 SCIENTIFIC RESOURCE AND THEN 2629 02:03:20,600 --> 02:03:25,160 THE DATA SCIENCE STRATEGY TO 2630 02:03:25,160 --> 02:03:29,520 LOOK AT INNOVATION AND DATA 2631 02:03:29,520 --> 02:03:31,560 WITH THE BROAD-BASED 2632 02:03:31,560 --> 02:03:36,280 DIGITIZATION. 2633 02:03:36,280 --> 02:03:37,560 >>MAYBE WE DON'T HAVE ANY 2634 02:03:37,560 --> 02:03:43,400 TIME LEFT TODAY BUT. 2635 02:03:43,400 --> 02:03:44,480 >>WE ALWAYS WANT TO TALK 2636 02:03:44,480 --> 02:03:50,320 ABOUT DATA SOME OF YOU MAY 2637 02:03:50,320 --> 02:03:54,800 ALREADY BE AWARE OF BUT TO 2638 02:03:54,800 --> 02:03:55,360 ACCELERATE THE PARTNERSHIPS 2639 02:03:55,360 --> 02:03:59,160 PROGRAM WHICH IS A CONSORTIUM 2640 02:03:59,160 --> 02:04:01,880 WITH THE NUMBER OF DATA 2641 02:04:01,880 --> 02:04:05,640 PORTALS THAT ARE EXTRAORDINARY 2642 02:04:05,640 --> 02:04:07,280 NOW THEY ARE TRYING TO FIGURE 2643 02:04:07,280 --> 02:04:09,360 OUT HOW TO MERGE THEMSELVES TO 2644 02:04:09,360 --> 02:04:12,360 BENEFIT THE COMMUNITY AT 2645 02:04:12,360 --> 02:04:16,040 LARGE. 2646 02:04:16,040 --> 02:04:16,960 MAYBE WOULD BE SURPRISED WITH 2647 02:04:16,960 --> 02:04:21,280 THE INITIATIVE BUT THEY NEVER 2648 02:04:21,280 --> 02:04:24,680 TALK TO THE RESEARCHERS WHO 2649 02:04:24,680 --> 02:04:25,080 STUDY OPIOID USE. 2650 02:04:25,080 --> 02:04:27,320 THEY JUST DON'T TALK TO ONE 2651 02:04:27,320 --> 02:04:28,760 ANOTHER. 2652 02:04:28,760 --> 02:04:31,800 NOW GETTING THEM TO DEPOSIT 2653 02:04:31,800 --> 02:04:39,200 DATA AND THEN WE THINK THAT 2654 02:04:39,200 --> 02:04:40,400 WILL LEAD TO AN IMPORTANT 2655 02:04:40,400 --> 02:04:40,640 INSIGHT. 2656 02:04:40,640 --> 02:04:45,640 SO AS THE TECHNOLOGY BECOMES 2657 02:04:45,640 --> 02:04:46,920 MORE ECUMENICAL IT WILL BE 2658 02:04:46,920 --> 02:04:52,880 BIGGER AND BOLDER. 2659 02:04:52,880 --> 02:04:53,440 >>IT IS EXCITING IF YOU ARE 2660 02:04:53,440 --> 02:04:59,120 REINVENTING THE NIH. 2661 02:04:59,120 --> 02:04:59,920 [LAUGHTER] 2662 02:04:59,920 --> 02:05:01,720 >>DON'T GO THERE. 2663 02:05:01,720 --> 02:05:06,000 [LAUGHTER] 2664 02:05:06,000 --> 02:05:13,440 >>LAST COMMENT AND QUESTION. 2665 02:05:13,440 --> 02:05:14,000 >>SO WHAT YOU SAID ON YOUR 2666 02:05:14,000 --> 02:05:14,720 SIDE WAS ONE OF THE ISSUES WAS 2667 02:05:14,720 --> 02:05:17,320 THE COST. 2668 02:05:17,320 --> 02:05:21,000 >>NOT ONLY COST TO THE 2669 02:05:21,000 --> 02:05:26,720 INVESTIGATOR FROM THE MODULAR 2670 02:05:26,720 --> 02:05:29,480 GRANTS BUT ALSO COST TO THE 2671 02:05:29,480 --> 02:05:30,160 INSTITUTION AND I THINK THAT 2672 02:05:30,160 --> 02:05:32,800 IS SOMETHING THAT HAS TO BE 2673 02:05:32,800 --> 02:05:36,800 ADDRESSED UP FRONT THAT THE 2674 02:05:36,800 --> 02:05:37,440 COMMUNITY FROM WHAT I HAVE 2675 02:05:37,440 --> 02:05:42,800 HEARD HAS CONCERNS TALK ABOUT 2676 02:05:42,800 --> 02:05:45,440 INVESTIGATORS OF THE NIH BUT 2677 02:05:45,440 --> 02:05:50,440 THOSE WHO HAVE TO SIGNOFF ON 2678 02:05:50,440 --> 02:05:51,160 THE PLANS DO THEY HAVE THE 2679 02:05:51,160 --> 02:05:53,480 INFRASTRUCTURE TO ACTUALLY DO 2680 02:05:53,480 --> 02:05:56,480 THAT AND THERE'S NO INDIRECT 2681 02:05:56,480 --> 02:05:57,520 COST ALLOWED FOR THE 2682 02:05:57,520 --> 02:05:57,840 INITIATIVE? 2683 02:05:57,840 --> 02:06:02,320 I REALLY THINK IT IS ADDRESSED 2684 02:06:02,320 --> 02:06:06,880 UP FRONT YOU HAD IT ON YOUR 2685 02:06:06,880 --> 02:06:10,240 SLIDE BUT YOU NEVER CAME BACK 2686 02:06:10,240 --> 02:06:10,840 TO ITS OWN TRYING TO COME BACK 2687 02:06:10,840 --> 02:06:11,720 TO IT NOW. 2688 02:06:11,720 --> 02:06:14,600 MAYBE THIS IS TOO BIG OF AN 2689 02:06:14,600 --> 02:06:17,960 ISSUE BUT I THINK IT IS HUGELY 2690 02:06:17,960 --> 02:06:19,480 IMPORTANT. 2691 02:06:19,480 --> 02:06:24,360 >>FORTUNATELY THREE YEARS AGO 2692 02:06:24,360 --> 02:06:27,840 SPONSORING A STUDY CALLED 2693 02:06:27,840 --> 02:06:32,880 FORECASTING THE LIFECYCLE AND 2694 02:06:32,880 --> 02:06:33,480 I WILL PUT THE LINK TO IT IN 2695 02:06:33,480 --> 02:06:36,000 THE CHAT IT GIVES A LIFECYCLE 2696 02:06:36,000 --> 02:06:37,800 APPROACH AS WELL AS THE 2697 02:06:37,800 --> 02:06:40,520 SPREADSHEET STRATEGY SO WHAT 2698 02:06:40,520 --> 02:06:45,760 WE NEED TO UNDERSTAND COST 2699 02:06:45,760 --> 02:06:47,760 SHIFTING AS WELL AS 2700 02:06:47,760 --> 02:06:52,640 COST-SAVING BUT COST SHIFTING 2701 02:06:52,640 --> 02:06:56,200 IS WHEN WE PROVIDE ALL THE 2702 02:06:56,200 --> 02:07:00,520 ANALYTICS ENGINES SO WE CHANGE 2703 02:07:00,520 --> 02:07:01,360 WHAT PEOPLE HAVE TO PAY FOR 2704 02:07:01,360 --> 02:07:03,040 AND AS EXPOSED WITH THE VALUE 2705 02:07:03,040 --> 02:07:06,880 OF DATA THIS BE AN INCREASING 2706 02:07:06,880 --> 02:07:08,640 DEBATE OVER THE NEXT FIVE 2707 02:07:08,640 --> 02:07:10,680 YEARS WHO GETS TO LEVERAGE THE 2708 02:07:10,680 --> 02:07:12,280 DATA BUT THE SCIENTIFIC 2709 02:07:12,280 --> 02:07:15,160 STANDPOINT THE COST OF 2710 02:07:15,160 --> 02:07:19,960 SECURING AND SHARING DATA CAN 2711 02:07:19,960 --> 02:07:23,160 BE A DIRECT COST THE COST TO 2712 02:07:23,160 --> 02:07:27,440 REMAIN THE REPOSITORIES OVER 2713 02:07:27,440 --> 02:07:31,840 THE NEXT FIVE YEARS WITH ALL 2714 02:07:31,840 --> 02:07:38,880 THE REPOSITORIES COMING 2715 02:07:38,880 --> 02:07:41,200 TOGETHER. 2716 02:07:41,200 --> 02:07:43,960 >>SO ON THE GRANT LEVEL PART 2717 02:07:43,960 --> 02:07:47,880 OF THE REASON WHY WE INSISTED 2718 02:07:47,880 --> 02:07:53,920 ON INCLUDING THE ATTACHMENT OF 2719 02:07:53,920 --> 02:07:54,320 COST IN THE BUDGET 2720 02:07:54,320 --> 02:07:54,800 JUSTIFICATION IS TO MAKE 2721 02:07:54,800 --> 02:07:55,360 PEOPLE START THINKING ABOUT 2722 02:07:55,360 --> 02:08:02,080 THIS FROM THE BEGINNING. 2723 02:08:02,080 --> 02:08:02,680 SO WE DO HAVE GUIDANCE ON WHAT 2724 02:08:02,680 --> 02:08:10,760 IS APPROPRIATE AS WE COLLECT 2725 02:08:10,760 --> 02:08:14,480 MORE DATA SAMPLE AND PLANS WE 2726 02:08:14,480 --> 02:08:18,040 ARE ABLE TO SHARE THAT AND HOW 2727 02:08:18,040 --> 02:08:24,440 THE COST EVOLVE BUT THE IDEA 2728 02:08:24,440 --> 02:08:25,000 IS WE WANT INSTITUTIONS AND 2729 02:08:25,000 --> 02:08:25,600 SCIENTISTS TO THINK ABOUT THIS 2730 02:08:25,600 --> 02:08:27,920 UP FRONT A NUMBER OF 2731 02:08:27,920 --> 02:08:28,480 INSTITUTIONS HAVE DEVELOPED 2732 02:08:28,480 --> 02:08:30,480 THEIR OWN DATA REPOSITORIES 2733 02:08:30,480 --> 02:08:34,640 AND PART OF THE REASON THEY 2734 02:08:34,640 --> 02:08:39,840 HAVE ECONOMIES OF SCALE AND A 2735 02:08:39,840 --> 02:08:43,320 NUMBER OF THE FOA INSTRUCT 2736 02:08:43,320 --> 02:08:44,560 SCIENTISTS TO THE POSITIVE 2737 02:08:44,560 --> 02:08:49,960 THERE DATA. 2738 02:08:49,960 --> 02:08:53,120 AND THEN TO PAY FOR OVERTIME. 2739 02:08:53,120 --> 02:09:02,080 AND THERE IS A REASON FOR THAT 2740 02:09:02,080 --> 02:09:02,640 FOR THE SAKE OF LONGER-TERM 2741 02:09:02,640 --> 02:09:03,160 DATA SHARING. 2742 02:09:03,160 --> 02:09:10,400 AND AS TIME GOES ON AN EVEN 2743 02:09:10,400 --> 02:09:12,040 GREATER DEPTH OF 2744 02:09:12,040 --> 02:09:15,600 UNDERSTANDING. 2745 02:09:15,600 --> 02:09:18,680 >>WE MOVE ON TO THE NEXT 2746 02:09:18,680 --> 02:09:22,160 TOPIC TALKING ABOUT DATA AND 2747 02:09:22,160 --> 02:09:26,000 DATA SHARING FOR THE LAST FOUR 2748 02:09:26,000 --> 02:09:28,480 HOURS BUT THERE WILL 2749 02:09:28,480 --> 02:09:32,560 DEFINITELY BE SOME TIME TO ADD 2750 02:09:32,560 --> 02:09:35,040 THESE TO THE JUNE AGENDA. 2751 02:09:35,040 --> 02:09:44,200 SO NOW WE'VE ALL TRANSITION TO 2752 02:09:44,200 --> 02:09:45,720 PROVIDE A REPORT TO THE 2753 02:09:45,720 --> 02:09:51,840 WORKING GROUP ON DIVERSITY. 2754 02:09:51,840 --> 02:09:58,560 HAS A SAD GROUP WITH A SERIES 2755 02:09:58,560 --> 02:10:00,920 OF RECOMMENDATIONS. 2756 02:10:00,920 --> 02:10:09,560 AND THEN AS COCHAIR. 2757 02:10:09,560 --> 02:10:12,280 >>I THINK ROBBIE WILL LAUNCH 2758 02:10:12,280 --> 02:10:14,280 THIS. 2759 02:10:14,280 --> 02:10:20,320 >>AND WITH THE NEXT 2760 02:10:20,320 --> 02:10:26,320 PRESENTATION DOCTOR BERNARD 2761 02:10:26,320 --> 02:10:26,840 HAS SHOWED UPDATES WITH 2762 02:10:26,840 --> 02:10:29,400 INDIVIDUALS WITH DISABILITIES 2763 02:10:29,400 --> 02:10:30,640 SO THIS GROUP OF SUBJECT 2764 02:10:30,640 --> 02:10:35,520 MATTER EXPERTS HAS BEEN HARD 2765 02:10:35,520 --> 02:10:37,120 AT THE PAST YEAR HOW NIH MIGHT 2766 02:10:37,120 --> 02:10:44,520 BOLSTER THE EFFORTS WE ARE SO 2767 02:10:44,520 --> 02:10:46,600 APPRECIATIVE OF THEIR EFFORTS 2768 02:10:46,600 --> 02:10:47,200 AND HAVE LEARNED MUCH DURING 2769 02:10:47,200 --> 02:10:50,680 THIS PROCESS. 2770 02:10:50,680 --> 02:10:51,200 THE MEMBERS OF THE WORKING 2771 02:10:51,200 --> 02:10:54,200 GROUP ON DIVERSITY REVIEW THE 2772 02:10:54,200 --> 02:10:55,040 OUTPUTS OF THEIR WORK AND 2773 02:10:55,040 --> 02:10:57,320 ENTHUSIASTICALLY SUPPORT. 2774 02:10:57,320 --> 02:11:01,880 WE ARE NOW PRESENTING THIS 2775 02:11:01,880 --> 02:11:02,480 REPORT WHICH HAS AN EXCELLENT 2776 02:11:02,480 --> 02:11:05,360 SET OF SUGGESTIONS FOR YOUR 2777 02:11:05,360 --> 02:11:05,720 CONSIDERATION. 2778 02:11:05,720 --> 02:11:08,080 THE SUBGROUPS INITIAL CHARGE 2779 02:11:08,080 --> 02:11:10,960 FOCUSING ON THE SCIENTIFIC 2780 02:11:10,960 --> 02:11:15,040 WORKFORCE AND IN ORDER TO 2781 02:11:15,040 --> 02:11:20,120 ADDRESS THE CHARGE TO INCLUDE 2782 02:11:20,120 --> 02:11:22,480 RESEARCH ADDRESSING HEALTH AND 2783 02:11:22,480 --> 02:11:26,400 HEALTHCARE DISPARITIES AND 2784 02:11:26,400 --> 02:11:28,480 INCREASING THE INCLUSION OF 2785 02:11:28,480 --> 02:11:32,120 PEOPLE OF RESEARCH STUDIES HE 2786 02:11:32,120 --> 02:11:33,880 SHOULD ALSO BE NOTED THEIR 2787 02:11:33,880 --> 02:11:36,920 EFFORTS WERE NOT BARRIERS IT 2788 02:11:36,920 --> 02:11:39,120 IS THE LACK OF COMPREHENSIVE 2789 02:11:39,120 --> 02:11:42,880 AND RELIABLE DATA THERE ARE 2790 02:11:42,880 --> 02:11:45,600 DIFFERENT DEFINITIONS OF 2791 02:11:45,600 --> 02:11:46,600 DISABILITY AND FEASIBILITY 2792 02:11:46,600 --> 02:11:51,400 AMONG STUDIES. 2793 02:11:51,400 --> 02:11:52,400 THERE IS NOT CONSISTENT NOR 2794 02:11:52,400 --> 02:11:53,000 BROAD ENOUGH GATHERING OF DATA 2795 02:11:53,000 --> 02:11:54,840 REGARDING DISABILITIES TO 2796 02:11:54,840 --> 02:11:57,440 ALLOW COMPREHENSIVE ASSESSMENT 2797 02:11:57,440 --> 02:12:01,400 OF OPPORTUNITIES THEN GAPS AND 2798 02:12:01,400 --> 02:12:04,280 ENHANCEMENT OF THE SCIENTIFIC 2799 02:12:04,280 --> 02:12:07,760 WORKFORCE. 2800 02:12:07,760 --> 02:12:10,120 AND THEN NOT LIMITING THOSE 2801 02:12:10,120 --> 02:12:15,960 CONSIDERATIONS BUT THIS IS TO 2802 02:12:15,960 --> 02:12:16,520 BE APPLAUDED GIVEN THE NEED 2803 02:12:16,520 --> 02:12:18,760 ARTICULATED FOR MORE CAREFUL 2804 02:12:18,760 --> 02:12:22,240 FOCUS ON PEOPLE WITH 2805 02:12:22,240 --> 02:12:22,800 DISABILITIES I WILL NOW TURN 2806 02:12:22,800 --> 02:12:26,400 IT OVER TO MY ESTEEMED COCHAIR. 2807 02:12:26,400 --> 02:12:33,360 >>THANK YOU. 2808 02:12:33,360 --> 02:12:33,960 DOCTOR MARTIN HAS TALKED ABOUT 2809 02:12:33,960 --> 02:12:34,440 THE BACKGROUND FOR THIS. 2810 02:12:34,440 --> 02:12:36,680 THE SUBCOMMITTEE ON 2811 02:12:36,680 --> 02:12:42,080 DISABILITIES THAT IS 2812 02:12:42,080 --> 02:12:42,680 CONSTITUTED AUGUST 2021 WITH 2813 02:12:42,680 --> 02:12:46,440 THE TIME-LIMITED CHARGE. 2814 02:12:46,440 --> 02:12:49,120 WE ASKED FOR A REPORT IN A FEW 2815 02:12:49,120 --> 02:12:57,360 YEARS PERIOD OF TIME TO INTERN 2816 02:12:57,360 --> 02:13:03,480 HAVE THE DIRECTOR ADVISE HOW 2817 02:13:03,480 --> 02:13:04,080 BEST TO SUPPORT THE INCLUSION 2818 02:13:04,080 --> 02:13:04,680 OF PEOPLE WITH DISABILITIES IN 2819 02:13:04,680 --> 02:13:09,400 THE SCIENTIFIC WORKFORCE. 2820 02:13:09,400 --> 02:13:09,960 WHAT WE ARE BRINGING FORWARD 2821 02:13:09,960 --> 02:13:10,680 IS A SET OF SUGGESTIONS FOR 2822 02:13:10,680 --> 02:13:11,800 YOUR CONSIDERATION YOU CAN 2823 02:13:11,800 --> 02:13:15,440 CHOOSE TO MAKE THE 2824 02:13:15,440 --> 02:13:18,400 RECOMMENDATION AND TO MODIFY 2825 02:13:18,400 --> 02:13:19,720 THEM. 2826 02:13:19,720 --> 02:13:21,040 YOU DON'T HAVE TO ACCEPT THE 2827 02:13:21,040 --> 02:13:25,160 REPORT IT'S UP TO THE ACD AT 2828 02:13:25,160 --> 02:13:25,480 THIS POINT. 2829 02:13:25,480 --> 02:13:27,720 I'M SORRY I DID NOT TALK ABOUT 2830 02:13:27,720 --> 02:13:35,440 THE SCOPE OF THIS. 2831 02:13:35,440 --> 02:13:45,680 WHAT HAPPENED? 2832 02:13:48,400 --> 02:13:58,720 WHAT AM I DOING WRONG? 2833 02:14:00,720 --> 02:14:03,600 THESE ARE THE MEMBERS OF THE 2834 02:14:03,600 --> 02:14:05,120 COMMITTEE. 2835 02:14:05,120 --> 02:14:09,400 WE HAVE BROAD RANGE OF EXPERTS 2836 02:14:09,400 --> 02:14:10,000 OF DISABILITY AND INDIVIDUALS 2837 02:14:10,000 --> 02:14:14,000 LIVING WITH DISABILITIES AND 2838 02:14:14,000 --> 02:14:19,680 THOSE TO STUDY THE CHALLENGES 2839 02:14:19,680 --> 02:14:22,400 AND TO HELP DISPARITIES OF 2840 02:14:22,400 --> 02:14:25,520 INDIVIDUALS AND WITH THOSE NIH 2841 02:14:25,520 --> 02:14:29,960 STAFF MEMBERS WHO ARE ALSO 2842 02:14:29,960 --> 02:14:37,440 SUBJECT MATTER EXPERTS AND THE 2843 02:14:37,440 --> 02:14:37,960 SCOPE WAS TO LOOK AT DATA 2844 02:14:37,960 --> 02:14:38,560 COLLECTION FOCUSED ON THOSE 2845 02:14:38,560 --> 02:14:39,040 WITH DISABILITIES IN THE 2846 02:14:39,040 --> 02:14:40,480 SCIENTIFIC WORKFORCE, DATA ON 2847 02:14:40,480 --> 02:14:43,880 THE PREVALENCE OF PEOPLE OF 2848 02:14:43,880 --> 02:14:47,120 THOSE VARIOUS CAREER STAGES 2849 02:14:47,120 --> 02:14:49,920 EVIDENCE-BASED PRACTICES TO 2850 02:14:49,920 --> 02:14:53,000 SUPPORT THOSE AND COUNTING THE 2851 02:14:53,000 --> 02:14:54,880 VARIATION AND THE PROGRAMS TO 2852 02:14:54,880 --> 02:15:00,080 DEMONSTRATE A SUCCESS AND 2853 02:15:00,080 --> 02:15:01,120 PERSPECTIVES OF PEOPLE WITH 2854 02:15:01,120 --> 02:15:01,440 DISABILITIES. 2855 02:15:01,440 --> 02:15:03,120 AS NOTED THE COMMITTEE VERY 2856 02:15:03,120 --> 02:15:09,240 QUICKLY FELT THEY NEED A 2857 02:15:09,240 --> 02:15:09,800 CHARGE TO ADDRESS THE HEALTH 2858 02:15:09,800 --> 02:15:14,640 AND HEALTHCARE DISPARITIES OF 2859 02:15:14,640 --> 02:15:16,880 THE INCLUSION AND RESEARCH 2860 02:15:16,880 --> 02:15:19,000 STUDIES. 2861 02:15:19,000 --> 02:15:21,280 >>IT'S IMPORTANT TO 2862 02:15:21,280 --> 02:15:23,040 UNDERSTAND WHAT WE ARE 2863 02:15:23,040 --> 02:15:26,320 ADDRESSING THERE ARE A LOT OF 2864 02:15:26,320 --> 02:15:26,920 DIFFERENT DEFINITIONS BUT THE 2865 02:15:26,920 --> 02:15:32,960 COMMITTEE POINTED OUT THERE IS 2866 02:15:32,960 --> 02:15:34,000 A MEDICAL MODEL AS A DISEASE 2867 02:15:34,000 --> 02:15:34,520 OR IMPAIRMENT THAT CAN BE 2868 02:15:34,520 --> 02:15:35,280 CORRECTED THROUGH TREATMENT 2869 02:15:35,280 --> 02:15:38,720 AND THEN THE SOCIAL MODEL THE 2870 02:15:38,720 --> 02:15:41,640 COMMUNITY MUCH PREFERS THAT 2871 02:15:41,640 --> 02:15:44,920 FOCUSES ON DISCRIMINATORY 2872 02:15:44,920 --> 02:15:46,000 ATTITUDES AND OTHER BARRIERS 2873 02:15:46,000 --> 02:15:50,840 TO INHIBIT TO FULLY 2874 02:15:50,840 --> 02:15:57,400 PARTICIPATE IN SOCIETY. 2875 02:15:57,400 --> 02:15:58,640 THE WHO LOOKS AT DISABILITY AS 2876 02:15:58,640 --> 02:16:03,600 ITS OWN TERM WITH CONTEXTUAL 2877 02:16:03,600 --> 02:16:06,920 FACTORS PERSONAL FACTORS AND 2878 02:16:06,920 --> 02:16:08,520 HEALTH CONDITIONS. 2879 02:16:08,520 --> 02:16:15,480 AND VERY IMPORTANTLY 2880 02:16:15,480 --> 02:16:16,880 UNDERSTANDING THE CONCEPT OF 2881 02:16:16,880 --> 02:16:17,440 PEOPLE IS ON WITH THE BELIEF 2882 02:16:17,440 --> 02:16:19,160 PEOPLE DISABILITIES ARE FLAWED 2883 02:16:19,160 --> 02:16:19,600 AND LESS VALUABLE THAN 2884 02:16:19,600 --> 02:16:21,680 NONDISABLED PEOPLE. 2885 02:16:21,680 --> 02:16:25,080 YOU PROBABLY HAVE HEARD AT 2886 02:16:25,080 --> 02:16:28,280 SOME POINT THAT PEOPLE WITH 2887 02:16:28,280 --> 02:16:28,640 DISABILITIES ARE 2888 02:16:28,640 --> 02:16:34,360 INTELLECTUALLY INFERIOR. 2889 02:16:34,360 --> 02:16:34,960 SO OF COURSE THEY DESERVE OUR 2890 02:16:34,960 --> 02:16:35,560 PITY HISTORICALLY LANGUAGE HAS 2891 02:16:35,560 --> 02:16:37,680 BEEN USED TO INDICATE 2892 02:16:37,680 --> 02:16:43,880 DISABILITY TO CONVEY ATTITUDES 2893 02:16:43,880 --> 02:16:45,200 AND I WILL ADMIT MY OWN OFFICE 2894 02:16:45,200 --> 02:16:46,520 MADE THAT ERROR EARLY ON TALK 2895 02:16:46,520 --> 02:16:52,520 ABOUT DIFFERENTLY ABLED 2896 02:16:52,520 --> 02:16:52,800 INDIVIDUALS 2897 02:16:52,800 --> 02:16:54,280 HANDICAPPED, MENTALLY OR 2898 02:16:54,280 --> 02:16:54,560 PHYSICALLY 2899 02:16:54,560 --> 02:16:55,120 CHALLENGED, HANDICAPPED THE 2900 02:16:55,120 --> 02:16:56,160 PREFERENCE IS YOU SIMPLY SAY 2901 02:16:56,160 --> 02:16:58,600 PEOPLE DISABILITIES OR A 2902 02:16:58,600 --> 02:17:01,760 DISABLED PERSON. 2903 02:17:01,760 --> 02:17:07,760 AND AS MENTIONED THERE ARE A 2904 02:17:07,760 --> 02:17:08,720 NUMBER OF EXECUTIVE AND 2905 02:17:08,720 --> 02:17:12,000 LEGISLATIVE MANDATES OUT 2906 02:17:12,000 --> 02:17:14,720 THERE. 2907 02:17:14,720 --> 02:17:17,760 THAT DISTRIBUTES ON THE BASIS 2908 02:17:17,760 --> 02:17:19,360 OF ORGANIZATIONS THAT RECEIVE 2909 02:17:19,360 --> 02:17:24,520 THE FUNDING THE ADA OF 1980 2910 02:17:24,520 --> 02:17:28,080 MANDATES FOR DISABLED PEOPLE 2911 02:17:28,080 --> 02:17:29,000 AND THE AFFORDABLE CARE ACT IN 2912 02:17:29,000 --> 02:17:33,400 2010 TO REQUIRE THE SECRETARY 2913 02:17:33,400 --> 02:17:35,600 OF HHS TO HAVE DATA COLLECTION 2914 02:17:35,600 --> 02:17:38,600 STANDARDS FOR DEMOGRAPHIC 2915 02:17:38,600 --> 02:17:44,280 ASPECTS AND COMING FOR THE 2916 02:17:44,280 --> 02:17:50,720 STRATEGIC PLAN AND COMING FROM 2917 02:17:50,720 --> 02:17:55,560 NIH THE EXECUTIVE ORDER 1395 2918 02:17:55,560 --> 02:17:55,960 ADVANCING EQUITY FOR 2919 02:17:55,960 --> 02:17:58,480 UNDERSERVED COMMITTEES WITH 2920 02:17:58,480 --> 02:17:59,560 PEOPLE DISABILITIES. 2921 02:17:59,560 --> 02:18:06,200 BUT AGAIN HOPING EACH HAD AN 2922 02:18:06,200 --> 02:18:10,240 OPPORTUNITY IN DETAIL TO GO 2923 02:18:10,240 --> 02:18:14,880 BEYOND. 2924 02:18:14,880 --> 02:18:15,480 SO THERE IS A PROBLEM I STATED 2925 02:18:15,480 --> 02:18:16,240 BUT THERE ARE DATA TALKING A 2926 02:18:16,240 --> 02:18:26,720 VERY HIGH LEVEL AND THIS IS 2927 02:18:29,040 --> 02:18:35,400 MUCH GRATITUDE TO THE DOCTORS 2928 02:18:35,400 --> 02:18:36,680 AND THE TEAM WHO DID MUCH OF 2929 02:18:36,680 --> 02:18:37,200 THE DATA CRUNCHING TO THE 2930 02:18:37,200 --> 02:18:39,560 PUBLISHED ARTICLES AND THEN 2931 02:18:39,560 --> 02:18:47,160 WITH THE COMMUNITY SURVEY TO 2932 02:18:47,160 --> 02:18:47,720 PUBLISH THE TALKS ABOUT THE 2933 02:18:47,720 --> 02:18:48,160 PREVALENCE OF PEOPLE 2934 02:18:48,160 --> 02:18:49,160 DISABILITIES OF THE GENERAL 2935 02:18:49,160 --> 02:18:50,360 POPULATION SO THE 27 PERCENT 2936 02:18:50,360 --> 02:18:56,280 OF US ADULTS HAVING REPORTED 2937 02:18:56,280 --> 02:18:59,040 DISABILITIES. 2938 02:18:59,040 --> 02:19:01,560 SO THE SINGLE LARGEST MINORITY 2939 02:19:01,560 --> 02:19:02,160 POPULATION IN THE COUNTRY AND 2940 02:19:02,160 --> 02:19:02,360 GROWING. 2941 02:19:02,360 --> 02:19:03,880 DISABILITIES ARE DIVERSE. 2942 02:19:03,880 --> 02:19:08,760 IT CAN BE CONGENITAL AS A 2943 02:19:08,760 --> 02:19:10,280 GERIATRICIAN I'M VERY AWARE OF 2944 02:19:10,280 --> 02:19:14,400 THE SEGMENT OF THE POPULATION 2945 02:19:14,400 --> 02:19:16,280 OF 65 AND OLDER. 2946 02:19:16,280 --> 02:19:18,600 SOME ARE APPARENT AND SOME ARE 2947 02:19:18,600 --> 02:19:21,600 VISIBLE SOME HAVE MULTIPLE 2948 02:19:21,600 --> 02:19:25,280 DISABILITIES. 2949 02:19:25,280 --> 02:19:27,240 AND WITH THAT PREVALENCE OF 2950 02:19:27,240 --> 02:19:31,600 DISABILITIES ONCE YOU START 2951 02:19:31,600 --> 02:19:32,200 LOOKING AT PEOPLE 65 AND OLDER 2952 02:19:32,200 --> 02:19:39,040 BUT EVEN LOOKING AT THOSE 35 2953 02:19:39,040 --> 02:19:39,600 THROUGH 64 AT THE HEIGHT THE 2954 02:19:39,600 --> 02:19:40,120 RESEARCH PRODUCTIVITY IS 2955 02:19:40,120 --> 02:19:42,240 12.8 PERCENT OF THE POPULATION 2956 02:19:42,240 --> 02:19:45,280 REPORTED DISABILITIES AND 2957 02:19:45,280 --> 02:19:46,800 7 PERCENT OF UNDERGRADUATE AND 2958 02:19:46,800 --> 02:19:50,480 GRADUATE TRAINING SO IT'S NOT 2959 02:19:50,480 --> 02:19:56,240 A SIGNIFICANT PROBLEM THAT'S 2960 02:19:56,240 --> 02:19:56,480 AVAILABLE. 2961 02:19:56,480 --> 02:20:05,640 >>LOOK INTO SEXUALITY AND SO 2962 02:20:05,640 --> 02:20:12,520 AGAIN THE COMMUNITY SURVEY AND 2963 02:20:12,520 --> 02:20:13,040 THE HIGHEST PREVALENCE OF 2964 02:20:13,040 --> 02:20:13,600 DISABILITY BUT THE ALASKA 2965 02:20:13,600 --> 02:20:18,880 NATIVE POPULATION AND THE 2966 02:20:18,880 --> 02:20:19,440 LOWEST PREVALENCE AMONG THE 2967 02:20:19,440 --> 02:20:21,080 ASIAN POPULATION ALL OF THIS 2968 02:20:21,080 --> 02:20:26,000 VERY MUCH DEPENDED UPON THE 2969 02:20:26,000 --> 02:20:29,320 CULTURAL DIFFERENCES TO 2970 02:20:29,320 --> 02:20:30,040 SUGGEST THERE COULD BE ISSUES 2971 02:20:30,040 --> 02:20:32,680 THAT NEED TO BE ADDRESSED AS 2972 02:20:32,680 --> 02:20:36,840 WELL WE DON'T HAVE A LOT OF 2973 02:20:36,840 --> 02:20:37,320 THE DATA THAT COULD BE 2974 02:20:37,320 --> 02:20:37,920 DESIRABLE BUT WE DO KNOW FOR 2975 02:20:37,920 --> 02:20:40,600 INSTANCE THE AMERICAN ALASKA 2976 02:20:40,600 --> 02:20:42,880 NATIVE POPULATION IS THE 2977 02:20:42,880 --> 02:20:43,880 SMALLEST IDENTIFIED FUNDED 2978 02:20:43,880 --> 02:20:52,480 POPULATION HERE AT NIH BUT 2979 02:20:52,480 --> 02:20:57,360 FROM OTHER STUDIES WE KNOW 2980 02:20:57,360 --> 02:20:57,880 THOSE PUT PEOPLE AT HIGHER 2981 02:20:57,880 --> 02:20:59,440 RISK FOR DISABILITY RELATED 2982 02:20:59,440 --> 02:21:03,080 HARASSMENT SUCH AS BEING 2983 02:21:03,080 --> 02:21:05,160 FEMALE OR HAVING A BEHAVIORAL 2984 02:21:05,160 --> 02:21:11,640 DISABILITY AND WE ALSO KNOW 2985 02:21:11,640 --> 02:21:12,120 THAT MINORITY SERVING 2986 02:21:12,120 --> 02:21:14,520 INSTITUTIONS SERVE ADDITIONAL 2987 02:21:14,520 --> 02:21:17,880 BARRIERS OF BUILDING AND 2988 02:21:17,880 --> 02:21:18,440 INFRASTRUCTURE WITH A LOVELY 2989 02:21:18,440 --> 02:21:26,320 LIST OF REFERENCES. 2990 02:21:26,320 --> 02:21:27,240 FROM THE NIH DATA WE KNOW 2991 02:21:27,240 --> 02:21:28,280 SEVEN.7 PERCENT OF OUR 2992 02:21:28,280 --> 02:21:31,160 POPULATION HAS DISCLOSED A 2993 02:21:31,160 --> 02:21:34,880 DISABILITY IT IS A CATEGORY 2994 02:21:34,880 --> 02:21:37,280 CALLED TARGETED DISABILITY 2995 02:21:37,280 --> 02:21:41,760 THAT MEANS WHAT IS CONSIDERED 2996 02:21:41,760 --> 02:21:44,720 AS THESE INDIVIDUALS GET 2997 02:21:44,720 --> 02:21:47,400 PRIORITY. 2998 02:21:47,400 --> 02:21:49,480 FIVE.6 PERCENT OF THE 2999 02:21:49,480 --> 02:21:50,000 POPULATION OF THE TARGETED 3000 02:21:50,000 --> 02:21:50,960 DISABILITIES AND THAT WAS 3001 02:21:50,960 --> 02:21:56,280 RELATED TO THE HIRING. 3002 02:21:56,280 --> 02:21:59,040 SIX.5 PERCENT DON'T IDENTIFY 3003 02:21:59,040 --> 02:22:02,120 WITH THE VAST MAJORITY SAID 3004 02:22:02,120 --> 02:22:06,520 THAT THEY DON'T. 3005 02:22:06,520 --> 02:22:07,400 LOOKING AT THE SCIENTIFIC 3006 02:22:07,400 --> 02:22:10,800 WORKFORCE ON AVERAGE IT'S 3007 02:22:10,800 --> 02:22:12,680 ABOUT 9 PERCENT OF THE 3008 02:22:12,680 --> 02:22:15,280 POPULATION WITH THE PERCENTAGE 3009 02:22:15,280 --> 02:22:20,400 OF INDIVIDUALS GOING DOWN YOU 3010 02:22:20,400 --> 02:22:25,360 CAN SEE A LITTLE BLIP TO BE 3011 02:22:25,360 --> 02:22:26,720 ASSOCIATED WITH OLDER ADULTS 3012 02:22:26,720 --> 02:22:30,400 TO BE A PART AND A VERY LOW 3013 02:22:30,400 --> 02:22:33,240 PREVALENCE OF PRACTICING 3014 02:22:33,240 --> 02:22:35,640 PHYSICIANS. 3015 02:22:35,640 --> 02:22:38,880 >>AND THEN RESEARCHERS WITH 3016 02:22:38,880 --> 02:22:42,760 DISABILITIES ONLY REPRESENT 3017 02:22:42,760 --> 02:22:43,280 BETWEEN ONE.NINE AND ONE.2 3018 02:22:43,280 --> 02:22:49,480 PERCENT OF THE TOTAL FUNDED 3019 02:22:49,480 --> 02:22:50,800 VERSUS WHAT WE CAN SEE FROM 3020 02:22:50,800 --> 02:22:52,680 THE GENERAL STUDIES FROM THE 3021 02:22:52,680 --> 02:22:54,960 AMERICAN COMMUNITY SURVEY WITH 3022 02:22:54,960 --> 02:22:56,760 A HIGHER PREVALENCE OF 3023 02:22:56,760 --> 02:22:58,360 DISABILITY IT WAS VERY 3024 02:22:58,360 --> 02:23:03,000 COMPELLING TO ME TO SIT IN ON 3025 02:23:03,000 --> 02:23:04,200 THE DELIBERATIONS OF THE 3026 02:23:04,200 --> 02:23:10,120 SUBCOMMITTEE TO HEAR THE 3027 02:23:10,120 --> 02:23:10,840 ANECDOTES OF THE BARRIERS THAT 3028 02:23:10,840 --> 02:23:11,400 SCIENTIST RAN INTO WHEN THEY 3029 02:23:11,400 --> 02:23:16,160 DECLARE THEIR DISABILITIES WE 3030 02:23:16,160 --> 02:23:18,120 SUSPECT BECAUSE OF THOSE THAT 3031 02:23:18,120 --> 02:23:23,520 DEVELOP AS A RESULT OF THAT SO 3032 02:23:23,520 --> 02:23:26,880 THE GROUP POINTED OUT THERE 3033 02:23:26,880 --> 02:23:31,920 ARE GAPS IN THE DATA PUBLICLY 3034 02:23:31,920 --> 02:23:34,400 AVAILABLE WITH THAT DISABILITY 3035 02:23:34,400 --> 02:23:43,000 PREVALENCE AND WITH THOSE 3036 02:23:43,000 --> 02:23:44,960 STUDIES TO MAKE THE SUGGESTION 3037 02:23:44,960 --> 02:23:46,960 THAT DATA COLLECTION METHODS 3038 02:23:46,960 --> 02:23:48,480 HAVE BEEN ENHANCED AND 3039 02:23:48,480 --> 02:23:52,440 CONSISTENT WITH THOSE 3040 02:23:52,440 --> 02:23:55,240 DEFINITIONS AND THEN THE 3041 02:23:55,240 --> 02:23:59,120 SISTER AGENCIES LIVING IN 3042 02:23:59,120 --> 02:24:01,400 PARTICULAR WITH AN INSTITUTE 3043 02:24:01,400 --> 02:24:04,800 FOR DISABILITY RESEARCH WITH 3044 02:24:04,800 --> 02:24:09,560 SOME LOVELY PARAMETERS THEY 3045 02:24:09,560 --> 02:24:11,480 MAKE SUGGESTIONS OF DATA 3046 02:24:11,480 --> 02:24:14,480 COLLECTION IN PARTNERSHIP WITH 3047 02:24:14,480 --> 02:24:20,240 THE DISABILITY COMMUNITY TO 3048 02:24:20,240 --> 02:24:21,440 ALLOW COMPARISONS OVER TIME TO 3049 02:24:21,440 --> 02:24:28,920 HAVE THOSE WORKFORCE EFFORTS 3050 02:24:28,920 --> 02:24:29,520 SO COMPARING APPLES TO APPLES 3051 02:24:29,520 --> 02:24:30,120 WHICH IS NOT NECESSARILY THE 3052 02:24:30,120 --> 02:24:30,320 CASE. 3053 02:24:30,320 --> 02:24:32,600 THEY ALSO SUGGEST NIH EFFORTS 3054 02:24:32,600 --> 02:24:33,600 TO COLLECT THE DISABILITY DATA 3055 02:24:33,600 --> 02:24:36,960 ON THE RESEARCH WORKFORCE. 3056 02:24:36,960 --> 02:24:38,240 THAT IS INADEQUATE FOR WHAT WE 3057 02:24:38,240 --> 02:24:43,000 HAVE IN PLACE SO IN COMMONS 3058 02:24:43,000 --> 02:24:43,960 RESEARCHERS CAN ONLY 3059 02:24:43,960 --> 02:24:49,120 SELF-REPORT HEARING AND VISUAL 3060 02:24:49,120 --> 02:24:52,240 OR OTHER AND THEY FEEL WE 3061 02:24:52,240 --> 02:24:56,320 SHOULD LET MORE GRANULE DATA 3062 02:24:56,320 --> 02:24:59,840 REPRESENTATION AND TYPES OF 3063 02:24:59,840 --> 02:25:02,720 DISABILITIES. 3064 02:25:02,720 --> 02:25:03,280 SO THEY HAVE A NUMBER OF 3065 02:25:03,280 --> 02:25:08,000 SUGGESTIONS FOR CONSIDERATION 3066 02:25:08,000 --> 02:25:11,040 AND THEY START OFF SUGGESTING 3067 02:25:11,040 --> 02:25:14,600 THE NIH MISSION STATEMENT BE 3068 02:25:14,600 --> 02:25:21,600 MODIFIED AND THAT GOES AGAINST 3069 02:25:21,600 --> 02:25:27,280 THE VIEWPOINT THAT IT IS SEEN 3070 02:25:27,280 --> 02:25:27,880 AS AN ABLEST COMMENT AND THEY 3071 02:25:27,880 --> 02:25:30,680 SUGGEST WE RECONSIDER IT. 3072 02:25:30,680 --> 02:25:31,720 THEY ARE SUGGESTING THE 3073 02:25:31,720 --> 02:25:34,120 ESTABLISHMENT OF NIH 3074 02:25:34,120 --> 02:25:38,840 DISABILITY RESEARCH ALONG WITH 3075 02:25:38,840 --> 02:25:39,360 THE TRIBAL HEALTH AND SEX 3076 02:25:39,360 --> 02:25:40,760 GENDER MINORITY RESEARCH 3077 02:25:40,760 --> 02:25:44,280 OFFICE IS VERY IMPACTFUL TO 3078 02:25:44,280 --> 02:25:44,680 BRING TOGETHER ALL 3079 02:25:44,680 --> 02:25:49,400 CONSIDERATIONS FOR RESEARCH 3080 02:25:49,400 --> 02:25:51,480 AND THOSE RELATIVE TO THE 3081 02:25:51,480 --> 02:25:53,720 TOPICS AND WOULD LIKE TO SEE A 3082 02:25:53,720 --> 02:25:55,520 CONCERTED EFFORT TO BRING 3083 02:25:55,520 --> 02:25:59,440 TOGETHER RESEARCH RELATED TO 3084 02:25:59,440 --> 02:26:01,400 DISABILITIES. 3085 02:26:01,400 --> 02:26:01,960 ALSO THEY ARE SUGGESTING THE 3086 02:26:01,960 --> 02:26:04,720 ESTABLISHMENT IS A DISABILITY 3087 02:26:04,720 --> 02:26:07,960 ACCESS COORDINATING COMMUNITY 3088 02:26:07,960 --> 02:26:10,520 TO WORK WITH OTHER ENTITIES 3089 02:26:10,520 --> 02:26:15,320 WITHIN NIH TO BE RESPONSIBLE 3090 02:26:15,320 --> 02:26:22,160 FOR DIVERSITY ISSUES THEY ARE 3091 02:26:22,160 --> 02:26:25,040 SUGGESTING THE DEVELOPMENT OF 3092 02:26:25,040 --> 02:26:27,280 INTERNAL TO IDENTIFY AND 3093 02:26:27,280 --> 02:26:29,360 ADDRESS ANY STRUCTURAL ABLEST 3094 02:26:29,360 --> 02:26:32,360 AM TO PROMOTE DISABILITY 3095 02:26:32,360 --> 02:26:38,960 INCLUSION FOR THOSE WITHIN THE 3096 02:26:38,960 --> 02:26:39,480 NIH CULTURE STRUCTURE TO 3097 02:26:39,480 --> 02:26:42,920 ADVANCED DISABILITY AND ANTI- 3098 02:26:42,920 --> 02:26:43,440 ABLEST AM TO TRAINING AND 3099 02:26:43,440 --> 02:26:46,440 COMMUNICATION AND POLICIES AND 3100 02:26:46,440 --> 02:26:46,760 ACCESSIBILITY. 3101 02:26:46,760 --> 02:26:48,040 SIMILAR TO WHAT WE ARE DOING 3102 02:26:48,040 --> 02:26:53,160 WITH NIH AND ALSO LOOK AT THE 3103 02:26:53,160 --> 02:26:54,600 POLICY STRUCTURE WITH 3104 02:26:54,600 --> 02:26:56,400 OPPORTUNITIES TO PROMOTE 3105 02:26:56,400 --> 02:26:59,440 INCLUSION WITH NIH FUNDED 3106 02:26:59,440 --> 02:27:00,000 RESEARCH. 3107 02:27:00,000 --> 02:27:00,920 THEY WOULD LIKE TO SEE US 3108 02:27:00,920 --> 02:27:08,280 EXPAND EFFORTS TO THOSE 3109 02:27:08,280 --> 02:27:08,840 PERSPECTIVES AND THEY VERY 3110 02:27:08,840 --> 02:27:10,920 MUCH LIKE US TO CONDUCT 3111 02:27:10,920 --> 02:27:13,120 RESEARCH WITH HEALTHCARE 3112 02:27:13,120 --> 02:27:16,560 DISPARITIES BY DESIGNATING 3113 02:27:16,560 --> 02:27:17,760 PEOPLE WITH THE DISPARITY 3114 02:27:17,760 --> 02:27:21,480 POPULATION BY FUNDING BY 3115 02:27:21,480 --> 02:27:23,360 HEALTH AND HEALTHCARE 3116 02:27:23,360 --> 02:27:28,600 DISPARITIES BY COLLECTING DATA 3117 02:27:28,600 --> 02:27:29,160 WHEREVER THE DEMOGRAPHIC 3118 02:27:29,160 --> 02:27:33,360 INFORMATION IS COLLECTED AND 3119 02:27:33,360 --> 02:27:38,080 BY SUPPORTING DISABLED PEOPLE 3120 02:27:38,080 --> 02:27:42,560 AS RESEARCH PARTICIPANTS. 3121 02:27:42,560 --> 02:27:43,080 THEY GO ON TO SUGGEST THAT 3122 02:27:43,080 --> 02:27:43,680 DISABILITY INCLUSION AND ANTI- 3123 02:27:43,680 --> 02:27:48,920 ABLEST AM ARE PART OF ALL 3124 02:27:48,920 --> 02:27:50,880 EFFORTS AND WE MAINTAIN 3125 02:27:50,880 --> 02:27:54,960 ACCOUNTABILITY. 3126 02:27:54,960 --> 02:27:59,560 THIS IS A VERY ABRIDGED 3127 02:27:59,560 --> 02:28:03,120 VERSION BUT IT GIVES AN 3128 02:28:03,120 --> 02:28:06,880 OPPORTUNITY TO THINK ABOUT IF 3129 02:28:06,880 --> 02:28:07,440 YOU WOULD LIKE TO ACCEPT OR 3130 02:28:07,440 --> 02:28:10,440 MODIFY THE REPORT AS PRESENTED 3131 02:28:10,440 --> 02:28:19,280 FOR YOUR DELIBERATION. 3132 02:28:19,280 --> 02:28:20,320 >>DO YOU HAVE ANY QUESTIONS 3133 02:28:20,320 --> 02:28:22,080 OR COMMENTS? 3134 02:28:22,080 --> 02:28:26,520 >>I DON'T KNOW IF THIS GROUP 3135 02:28:26,520 --> 02:28:33,360 HAS DONE WITH THE SUBCOMMITTEE 3136 02:28:33,360 --> 02:28:33,960 WORKING GROUP JUST TO PROCESS 3137 02:28:33,960 --> 02:28:35,920 THESE ISSUES SO NORMALLY THE 3138 02:28:35,920 --> 02:28:40,840 PARENT COMMITTEE WE HAVE 3139 02:28:40,840 --> 02:28:42,280 PUBLIC MEETINGS EVERYBODY CAN 3140 02:28:42,280 --> 02:28:45,240 HEAR WHAT'S GOING ON THE 3141 02:28:45,240 --> 02:28:46,320 WORKING GROUPS TYPICALLY DO 3142 02:28:46,320 --> 02:28:55,440 NOT WORK PUBLICLY SO THIS IS A 3143 02:28:55,440 --> 02:28:59,880 SUBGROUP OF ONE OF THOSE 3144 02:28:59,880 --> 02:29:00,480 WORKING COMMITTEES YOU HAVE TO 3145 02:29:00,480 --> 02:29:01,520 FORMALLY DECIDE IF YOU WANT TO 3146 02:29:01,520 --> 02:29:07,040 ACCEPT THE REPORT AS DELIVERED 3147 02:29:07,040 --> 02:29:07,600 OR PIECES OF THE REPORT FOR 3148 02:29:07,600 --> 02:29:18,080 FURTHER CONSIDERATION YOU DO 3149 02:29:18,400 --> 02:29:19,400 HAVE A WORKING GROUP AS WELL 3150 02:29:19,400 --> 02:29:21,000 THAT THERE IS ADDITIONAL STAFF 3151 02:29:21,000 --> 02:29:25,840 I WOULD SAY I DID HAVE AN 3152 02:29:25,840 --> 02:29:27,440 OPPORTUNITY TO READ THE ENTIRE 3153 02:29:27,440 --> 02:29:29,440 REPORT IT IS EXTREMELY 3154 02:29:29,440 --> 02:29:33,840 COMPREHENSIVE WHICH IS A GOOD 3155 02:29:33,840 --> 02:29:34,560 THING AND I WOULD BE VERY 3156 02:29:34,560 --> 02:29:36,800 INTERESTED IN HEARING FEEDBACK 3157 02:29:36,800 --> 02:29:44,760 FROM THE ACD MEMBERS OF ANY 3158 02:29:44,760 --> 02:29:45,360 OTHER THING YOU MIGHT WANT TO 3159 02:29:45,360 --> 02:29:51,600 ADD TO THAT. 3160 02:29:51,600 --> 02:29:52,200 >>AS A POINT OF CLARIFICATION 3161 02:29:52,200 --> 02:29:52,840 DO THEY HAVE TO EXHORT ONE —- 3162 02:29:52,840 --> 02:29:54,880 ACCEPT AND ENDORSE? 3163 02:29:54,880 --> 02:29:56,040 >>I PRESUME THEY HAVE DONE 3164 02:29:56,040 --> 02:29:58,840 THAT ALREADY. 3165 02:29:58,840 --> 02:30:01,840 THAT IS CORRECT. 3166 02:30:01,840 --> 02:30:03,520 YES. 3167 02:30:03,520 --> 02:30:08,000 >>REBECCA? 3168 02:30:08,000 --> 02:30:16,000 >>SO THANK YOU FOR ALL OF THE 3169 02:30:16,000 --> 02:30:18,120 WORK ON THIS TOPIC. 3170 02:30:18,120 --> 02:30:23,240 I ALSO HAVE THE OPPORTUNITY TO 3171 02:30:23,240 --> 02:30:23,800 READ THE FULL REPORT AND I 3172 02:30:23,800 --> 02:30:25,400 PERSONALLY SUPPORT ALL OF 3173 02:30:25,400 --> 02:30:28,880 THESE SUGGESTIONS. 3174 02:30:28,880 --> 02:30:31,840 I JUST HAVE A COUPLE OF 3175 02:30:31,840 --> 02:30:37,160 QUESTIONS MY FIRST QUESTION IS 3176 02:30:37,160 --> 02:30:43,600 AS WE CREATE ANOTHER OFFICE 3177 02:30:43,600 --> 02:30:48,880 RELATED TO THE SPECIFIC 3178 02:30:48,880 --> 02:30:54,840 POPULATION THAT I WANT TO HEAR 3179 02:30:54,840 --> 02:30:56,840 ABOUT THAT SYNERGY AND 3180 02:30:56,840 --> 02:30:59,080 COMMONALITY WITH THE PARALLEL 3181 02:30:59,080 --> 02:31:05,240 EFFORT THAT IS HAPPENING WITH 3182 02:31:05,240 --> 02:31:09,000 NIH OR WHAT IS HAPPENING SO 3183 02:31:09,000 --> 02:31:11,400 HEARING ABOUT THE INITIATIVE 3184 02:31:11,400 --> 02:31:14,760 THIS MORNING THERE IS A 3185 02:31:14,760 --> 02:31:18,960 GROWING POPULATION DUE TO LONG 3186 02:31:18,960 --> 02:31:22,200 COVID WHICH COULD AFFECT THE 3187 02:31:22,200 --> 02:31:24,920 OVERALL SIZE AND MAKEUP OF 3188 02:31:24,920 --> 02:31:26,240 PEOPLE WITH DISABILITIES 3189 02:31:26,240 --> 02:31:30,760 MOVING FORWARD SO ARE THERE 3190 02:31:30,760 --> 02:31:33,280 ANY ACTIVITIES SPECIFIC TO 3191 02:31:33,280 --> 02:31:36,360 THAT POPULATION OR HOW THAT IS 3192 02:31:36,360 --> 02:31:37,840 CHANGING WITHIN THIS 3193 02:31:37,840 --> 02:31:38,120 INITIATIVE? 3194 02:31:38,120 --> 02:31:45,320 AND THE THIRD FOR MY OWN 3195 02:31:45,320 --> 02:31:50,160 KNOWLEDGE THERE IS A SECTION 3196 02:31:50,160 --> 02:31:56,840 ON IT SO THERE IS THE OFFICE 3197 02:31:56,840 --> 02:32:02,600 AND THE CHANGE IN THE LANGUAGE 3198 02:32:02,600 --> 02:32:03,200 OR TO BROADEN THE LANGUAGE FOR 3199 02:32:03,200 --> 02:32:03,600 HEALTH DISPARITY. 3200 02:32:03,600 --> 02:32:10,880 WHEN YOU BROADEN THE LANGUAGE 3201 02:32:10,880 --> 02:32:11,480 CAN YOU TALK SPECIFICALLY MORE 3202 02:32:11,480 --> 02:32:12,160 ON THE IMPLICATIONS OF THAT TO 3203 02:32:12,160 --> 02:32:13,320 THE CLINICAL TRIALS OF NIH 3204 02:32:13,320 --> 02:32:14,480 FUNDED? 3205 02:32:14,480 --> 02:32:23,480 ARE THERE ANY? 3206 02:32:23,480 --> 02:32:24,560 AND SO PROPOSING A TRIAL NOW 3207 02:32:24,560 --> 02:32:25,000 YOU ARE ADDRESSING THE 3208 02:32:25,000 --> 02:32:28,400 POPULATION AS WELL AND THE 3209 02:32:28,400 --> 02:32:33,120 PARALLEL QUESTION AND WHAT IS 3210 02:32:33,120 --> 02:32:36,240 HELP HEALTH DISPARITIES 3211 02:32:36,240 --> 02:32:42,240 DEVELOPED. 3212 02:32:42,240 --> 02:32:47,680 SO I GUESS I HAD THAT SAME 3213 02:32:47,680 --> 02:32:50,200 SORT OF QUESTION BROUGHT INTO 3214 02:32:50,200 --> 02:32:53,240 THE ELIGIBILITY. 3215 02:32:53,240 --> 02:33:00,600 >>SO STARTING WITH THE LAST 3216 02:33:00,600 --> 02:33:05,600 ONE FIRST IN ORDER TO BE 3217 02:33:05,600 --> 02:33:13,520 FORMALLY DECLARED THE DIRECTOR 3218 02:33:13,520 --> 02:33:14,080 OF THE NATIONAL INSTITUTE OF 3219 02:33:14,080 --> 02:33:17,800 HEALTH OF DISPARITIES SO 3220 02:33:17,800 --> 02:33:22,120 WITHIN THE DEPARTMENT OF HHS 3221 02:33:22,120 --> 02:33:26,360 HALF TO AGREE THAT THE 3222 02:33:26,360 --> 02:33:30,480 CATEGORY SHOULD BE INCLUDED AS 3223 02:33:30,480 --> 02:33:31,960 A HEALTH DISPARITIES. 3224 02:33:31,960 --> 02:33:36,760 MOST RECENTLY THIS IS DONE 3225 02:33:36,760 --> 02:33:37,280 WITH THE HEALTH AND SEXUAL 3226 02:33:37,280 --> 02:33:40,760 GENDER MINORITY SO THERE IS AN 3227 02:33:40,760 --> 02:33:45,840 ENTIRE PROCESS WITH THOSE TWO 3228 02:33:45,840 --> 02:33:50,080 INDIVIDUALS TO BRING FORTH THE 3229 02:33:50,080 --> 02:33:52,600 RECOMMENDATION TO GO TO THE 3230 02:33:52,600 --> 02:33:57,720 DEPARTMENT OF HHS IT IS A 3231 02:33:57,720 --> 02:34:00,920 PROCESS THAT WOULD TAKE TIME 3232 02:34:00,920 --> 02:34:04,600 IF WE DECIDE TO PURSUE THAT 3233 02:34:04,600 --> 02:34:10,480 RECOMMENDATION YOU COULD LOOK 3234 02:34:10,480 --> 02:34:12,560 AT THE ALLOCATION ONE OF TWO 3235 02:34:12,560 --> 02:34:13,880 WAYS. 3236 02:34:13,880 --> 02:34:21,440 THE PIE OF RESOURCES IS NOT 3237 02:34:21,440 --> 02:34:24,120 GOING IS DIVIDED ADDITIONALLY 3238 02:34:24,120 --> 02:34:25,160 AND ALSO AN OPPORTUNITY TO 3239 02:34:25,160 --> 02:34:32,520 GROW THE FIVE. 3240 02:34:32,520 --> 02:34:33,920 AND WITH THE NEED OF THE 3241 02:34:33,920 --> 02:34:39,360 ADDITIONAL WORK IN THESE AREAS 3242 02:34:39,360 --> 02:34:45,000 AND INDIVIDUALS WHO BELONG TO 3243 02:34:45,000 --> 02:34:46,000 A CURRENTLY DEFINED HEALTH 3244 02:34:46,000 --> 02:34:49,040 DISPARITY GROUP ARE ALSO AMONG 3245 02:34:49,040 --> 02:34:50,880 THOSE WHO ARE DISABLED. 3246 02:34:50,880 --> 02:34:54,240 SO THERE IS OVERLAP IT ISN'T 3247 02:34:54,240 --> 02:34:57,040 ONE OR THE OTHER. 3248 02:34:57,040 --> 02:34:59,920 SORRY THAT WAS LONG-WINDED BUT 3249 02:34:59,920 --> 02:35:04,240 IT IS A COMPLICATED PROCESS TO 3250 02:35:04,240 --> 02:35:12,960 GET A FORMAL HEALTH DISPARITY. 3251 02:35:12,960 --> 02:35:16,720 SO WITH REGARD TO A FIN OFFICE 3252 02:35:16,720 --> 02:35:22,320 WERE TO BE CREATED, HOW DOES 3253 02:35:22,320 --> 02:35:26,760 THAT OPERATIONAL LENS? 3254 02:35:26,760 --> 02:35:27,360 OVER THE LAST NUMBER OF YEARS 3255 02:35:27,360 --> 02:35:30,920 WE HAVE CREATED FUNCTIONAL 3256 02:35:30,920 --> 02:35:37,120 GROUPS WHICH THEN DEVELOPED 3257 02:35:37,120 --> 02:35:38,600 INTO SMALL OFFICES TO HELP US 3258 02:35:38,600 --> 02:35:39,520 WITH CERTAIN AREAS THAT 3259 02:35:39,520 --> 02:35:42,480 REQUIRE SOME ADDITIONAL 3260 02:35:42,480 --> 02:35:45,600 COORDINATION AND OVERSIGHT. 3261 02:35:45,600 --> 02:35:49,400 WE HAVE ALSO USED COMMITTEES 3262 02:35:49,400 --> 02:35:55,040 ACROSS THE AGENCY FOR THAT 3263 02:35:55,040 --> 02:35:55,440 PURPOSE AS WELL. 3264 02:35:55,440 --> 02:35:58,280 THERE ARE ADVANTAGES AND 3265 02:35:58,280 --> 02:36:05,720 DISADVANTAGES TO EACH APPROACH. 3266 02:36:05,720 --> 02:36:08,880 SOMETIMES YOU ADD TO ONE OR 3267 02:36:08,880 --> 02:36:13,320 THE OTHER WITH THE COMMITTEE 3268 02:36:13,320 --> 02:36:13,920 THAT GIVES YOU THE OPPORTUNITY 3269 02:36:13,920 --> 02:36:16,720 TO ENGAGE FORMALLY WITH THE 3270 02:36:16,720 --> 02:36:27,040 PUBLIC IN A PUBLIC SETTING SO 3271 02:36:27,040 --> 02:36:28,440 YOU COULD APPROACH THIS IN ONE 3272 02:36:28,440 --> 02:36:31,040 OF SEVERAL WAYS AND SOMETIMES 3273 02:36:31,040 --> 02:36:36,080 NOT MUTUALLY EXCLUSIVE. 3274 02:36:36,080 --> 02:36:37,600 SO IF THAT IS A RECOMMENDATION 3275 02:36:37,600 --> 02:36:40,440 THAT COMES FORWARD THAT COULD 3276 02:36:40,440 --> 02:36:41,880 BE CONSIDERED AS WELL AND THEN 3277 02:36:41,880 --> 02:36:46,360 WE THINK THROUGH FOR THE BEST 3278 02:36:46,360 --> 02:36:46,960 WAY AT THIS MOMENT IN TIME TO 3279 02:36:46,960 --> 02:36:48,640 UNDERSTANDING THAT WITH TIME 3280 02:36:48,640 --> 02:36:58,720 IT EVOLVES. 3281 02:36:58,720 --> 02:36:59,280 AND NOW THE THIRD PART AS A 3282 02:36:59,280 --> 02:36:59,880 START TO LOSE MY FACILITY WITH 3283 02:36:59,880 --> 02:37:02,960 REGARD TO CURRENT FUNDING 3284 02:37:02,960 --> 02:37:10,520 OPPORTUNITY AND TO THAT IF 3285 02:37:10,520 --> 02:37:11,400 THERE ARE SPECIFIC SHE WOULD 3286 02:37:11,400 --> 02:37:14,920 LIKE TO HIGHLIGHT ABOUT THAT. 3287 02:37:14,920 --> 02:37:20,000 >>QUITE HONESTLY I DON'T HAVE 3288 02:37:20,000 --> 02:37:20,600 THOSE NUMBERS AT MY FINGERTIPS 3289 02:37:20,600 --> 02:37:22,800 THAT WE HAVE HAD CONVERSATIONS 3290 02:37:22,800 --> 02:37:24,920 ALREADY WITH HEAD OF THE 3291 02:37:24,920 --> 02:37:32,520 HEALTH DISPARITIES AND I KNOW 3292 02:37:32,520 --> 02:37:35,640 THINKING ABOUT DESIGNATIONS 3293 02:37:35,640 --> 02:37:38,920 WITH THE SUBCOMMITTEE TO TAKE 3294 02:37:38,920 --> 02:37:40,760 ABOUT THINGS RELATED TO PEOPLE 3295 02:37:40,760 --> 02:37:45,320 WITH DISABILITIES AND I CAN 3296 02:37:45,320 --> 02:37:45,920 ALSO SAY THAT AS WE BEGIN THE 3297 02:37:45,920 --> 02:37:46,400 IMPLEMENTATION OF THE 3298 02:37:46,400 --> 02:37:50,880 STRATEGIC PLAN THERE IS NEW 3299 02:37:50,880 --> 02:37:53,280 OPPORTUNITIES TO ARISE AS A 3300 02:37:53,280 --> 02:37:55,760 RESULT SO THIS REPORT IS 3301 02:37:55,760 --> 02:37:58,560 COMING IN AT A REALLY GOOD 3302 02:37:58,560 --> 02:38:03,680 TIME BECAUSE WHAT IS THE PLAN 3303 02:38:03,680 --> 02:38:06,880 IN THE DIRECTION HOPING TO GO 3304 02:38:06,880 --> 02:38:11,920 WITH NIH IT IS ALL GOOD. 3305 02:38:11,920 --> 02:38:13,240 AND I SHOULD MENTION THE 3306 02:38:13,240 --> 02:38:14,920 COCHAIRS OF THE DISABILITIES 3307 02:38:14,920 --> 02:38:24,320 SUBGROUP THEY ARE ON WITH 3308 02:38:24,320 --> 02:38:26,160 QUESTIONS SPECIFIC TO THE 3309 02:38:26,160 --> 02:38:28,440 COCHAIR. 3310 02:38:28,440 --> 02:38:29,760 >>YOU MIGHT ASK IF THEY HAVE 3311 02:38:29,760 --> 02:38:33,200 ANYTHING TO ADD SINCE THEY ARE 3312 02:38:33,200 --> 02:38:42,840 ON THE CALL? 3313 02:38:42,840 --> 02:38:50,080 >>I'M HAPPY TO COMMENT FROM A 3314 02:38:50,080 --> 02:38:52,480 RESEARCHERS PERSPECTIVE THE 3315 02:38:52,480 --> 02:38:54,720 HEALTH DISPARITY DESIGNATION 3316 02:38:54,720 --> 02:39:00,200 OPENS OPPORTUNITIES IN THAT IS 3317 02:39:00,200 --> 02:39:00,800 CURRENTLY NOT AVAILABLE TO US 3318 02:39:00,800 --> 02:39:04,680 IN THE REPORT WE OUTLINED 3319 02:39:04,680 --> 02:39:09,480 CONCLUSIVELY THAT DISPARITIES 3320 02:39:09,480 --> 02:39:12,440 EXIST AND INEQUITIES ARE THERE 3321 02:39:12,440 --> 02:39:14,440 WITHOUT THAT OPPORTUNITY TO DO 3322 02:39:14,440 --> 02:39:19,520 SOMETHING AND THAT DESIGNATION 3323 02:39:19,520 --> 02:39:30,040 SUPPORTS THOSE OPPORTUNITIES. 3324 02:39:32,040 --> 02:39:37,360 >>ANY OTHER COMMENTS FROM THE 3325 02:39:37,360 --> 02:39:44,720 COCHAIR? 3326 02:39:44,720 --> 02:39:45,240 >>THIS IS A QUESTION OF 3327 02:39:45,240 --> 02:39:45,800 CLARITY OF WHAT WE ARE BEING 3328 02:39:45,800 --> 02:39:46,000 ASKED. 3329 02:39:46,000 --> 02:39:51,320 IF WE APPROVE THIS DO WE 3330 02:39:51,320 --> 02:39:51,840 APPROVE FORMATION OF THE 3331 02:39:51,840 --> 02:39:54,280 OFFICE OR THINKING ABOUT IT 3332 02:39:54,280 --> 02:39:55,840 MORE? 3333 02:39:55,840 --> 02:39:56,120 [LAUGHTER] 3334 02:39:56,120 --> 02:40:02,880 >>WHAT THE ACD WOULD DO IF 3335 02:40:02,880 --> 02:40:04,880 YOU WANT TO APPROVE THE 3336 02:40:04,880 --> 02:40:09,640 RECOMMENDATIONS AND TOGETHER 3337 02:40:09,640 --> 02:40:10,160 WITH MY TEAM WE WILL WORK 3338 02:40:10,160 --> 02:40:14,640 THROUGH THEM TO DECIDE WHICH 3339 02:40:14,640 --> 02:40:18,640 TO ACCEPT HER WHICH TO ATTEMPT 3340 02:40:18,640 --> 02:40:19,280 TO MODIFY OR WHAT NOT TO 3341 02:40:19,280 --> 02:40:24,440 ACCEPT OR SO FORTH. 3342 02:40:24,440 --> 02:40:27,040 SO SOMETIMES THERE IS A SINGLE 3343 02:40:27,040 --> 02:40:32,040 RECOMMENDATION THAT'S VERY 3344 02:40:32,040 --> 02:40:32,640 COMPLICATED SO ACCEPTED AT THE 3345 02:40:32,640 --> 02:40:37,600 MOMENT IT IS PROVIDED. 3346 02:40:37,600 --> 02:40:38,120 AGAIN AS REFLECTED BY THE 3347 02:40:38,120 --> 02:40:39,160 COMPREHENSIVE NATURE OF THE 3348 02:40:39,160 --> 02:40:43,760 REPORT, THERE ARE SOME 3349 02:40:43,760 --> 02:40:44,320 COMPLEXITIES HERE WE NEED TO 3350 02:40:44,320 --> 02:40:46,760 WORK THROUGH THIS VERY 3351 02:40:46,760 --> 02:40:47,040 CAREFULLY. 3352 02:40:47,040 --> 02:40:51,800 THAT THE INITIAL STEP THE 3353 02:40:51,800 --> 02:40:57,720 SECONDARY STEP WOULD BE TO 3354 02:40:57,720 --> 02:40:59,840 ACCEPT THE REPORT THEN IT 3355 02:40:59,840 --> 02:41:05,600 COMES TO ME AND MY COLLEAGUES 3356 02:41:05,600 --> 02:41:06,400 HERE. 3357 02:41:06,400 --> 02:41:09,320 >>THIS IS CLEARLY A VERY 3358 02:41:09,320 --> 02:41:11,320 IMPORTANT ISSUE IN TERMS OF 3359 02:41:11,320 --> 02:41:15,240 DIVERSITY OF THE WORKFORCE I 3360 02:41:15,240 --> 02:41:17,960 WOULD LIKE TO SHARE MORE ABOUT 3361 02:41:17,960 --> 02:41:21,960 WHY WERE THE INTEGERS OR 3362 02:41:21,960 --> 02:41:22,480 DISADVANTAGES OF HAVING A 3363 02:41:22,480 --> 02:41:27,200 SEPARATE OFFICE FOR DIVERSITY 3364 02:41:27,200 --> 02:41:34,560 VERSUS EXPANDING IF IT'S 3365 02:41:34,560 --> 02:41:35,040 ALREADY WITHIN THE DTI 3366 02:41:35,040 --> 02:41:36,240 PURVIEW? 3367 02:41:36,240 --> 02:41:37,320 THIS IS SOMETHING I'M NOT 3368 02:41:37,320 --> 02:41:39,880 100 PERCENT CLEAR ABOUT. 3369 02:41:39,880 --> 02:41:45,760 >>I WOULD CERTAINLY SAY TO 3370 02:41:45,760 --> 02:41:46,720 STEP BACK AND LOOK CAREFULLY 3371 02:41:46,720 --> 02:41:52,080 AT HOW WE CAN REALLY MEET THE 3372 02:41:52,080 --> 02:41:55,040 SPIRIT VERSUS WHAT IS BEING 3373 02:41:55,040 --> 02:41:59,240 SUGGESTED AS A CHEESE OFFICER 3374 02:41:59,240 --> 02:41:59,800 OF WORKFORCE DIVERSITY THEY 3375 02:41:59,800 --> 02:42:01,600 POINTED OUT IN OUR STRATEGIC 3376 02:42:01,600 --> 02:42:05,760 PLAN AND I CERTAINLY INTEND TO 3377 02:42:05,760 --> 02:42:09,120 BE ATTENTIVE TO THAT BUT THERE 3378 02:42:09,120 --> 02:42:15,680 HAS NOT BEEN THE FOCUS 3379 02:42:15,680 --> 02:42:16,880 CONCERTED TO THOSE A 3380 02:42:16,880 --> 02:42:20,960 DISABILITIES TO BE DESIRABLE 3381 02:42:20,960 --> 02:42:21,520 AND THE CONCEPT OF HAVING AN 3382 02:42:21,520 --> 02:42:23,320 OFFICE THAT LOOKS AT THAT 3383 02:42:23,320 --> 02:42:26,400 SPECIFICALLY COULD BE 3384 02:42:26,400 --> 02:42:30,920 BENEFICIAL BUT WE HAVE THE 3385 02:42:30,920 --> 02:42:37,240 COCHAIRS HERE. 3386 02:42:37,240 --> 02:42:41,320 >>THANK YOU. 3387 02:42:41,320 --> 02:42:42,640 WE REALLY HAVE APPRECIATED 3388 02:42:42,640 --> 02:42:45,360 WORKING WITH YOU AND YOUR TEAM 3389 02:42:45,360 --> 02:42:50,600 BUT HAVING THE CENTER RAISES 3390 02:42:50,600 --> 02:42:56,840 THE ISSUES SO TO THE END OF 3391 02:42:56,840 --> 02:42:59,720 DTI THAT NEEDS TO BE ACTED 3392 02:42:59,720 --> 02:43:05,600 UPON SO WE FEEL VERY STRONGLY 3393 02:43:05,600 --> 02:43:10,480 TO HELP LOCATE THAT ACTION AND 3394 02:43:10,480 --> 02:43:14,880 ALSO WE WERE VERY MUCH ADVISED 3395 02:43:14,880 --> 02:43:15,360 TO PUT TOGETHER THESE 3396 02:43:15,360 --> 02:43:18,040 RECOMMENDATIONS. 3397 02:43:18,040 --> 02:43:22,600 SO WE BUILT UPON THE WAY THAT 3398 02:43:22,600 --> 02:43:24,920 OTHER SIMILAR OFFICES ARE 3399 02:43:24,920 --> 02:43:25,240 STRUCTURED. 3400 02:43:25,240 --> 02:43:33,240 SO I WILL LEAVE IT THERE. 3401 02:43:33,240 --> 02:43:35,720 THE ESTABLISHMENT OF THE 3402 02:43:35,720 --> 02:43:42,880 OFFICE IN MY VIEW IS OUR 3403 02:43:42,880 --> 02:43:43,320 RESPONSE TO A DEEPLY 3404 02:43:43,320 --> 02:43:47,000 UNDERAPPRECIATED NEED FOR THE 3405 02:43:47,000 --> 02:43:48,880 EXCLUSION OF PEOPLE WITH 3406 02:43:48,880 --> 02:43:54,920 DISABILITIES ALL ASPECTS OF 3407 02:43:54,920 --> 02:43:55,520 BIOMEDICAL WORK AND RESEARCH 3408 02:43:55,520 --> 02:43:59,920 AND THE RESEARCH THAT WE DO IN 3409 02:43:59,920 --> 02:44:03,400 THE DISABILITY COMMUNITY IS 3410 02:44:03,400 --> 02:44:05,160 QUITE DIVERSE. 3411 02:44:05,160 --> 02:44:13,560 ALL I SEE IS INTERACTING WITH 3412 02:44:13,560 --> 02:44:14,920 DISABLED PEOPLE THERE IS 3413 02:44:14,920 --> 02:44:15,480 HARMONY AND DISORGANIZATION 3414 02:44:15,480 --> 02:44:16,680 THAT NEEDS TO OCCUR ACROSS NIH 3415 02:44:16,680 --> 02:44:19,720 TO DO THIS RIGHT. 3416 02:44:19,720 --> 02:44:21,080 I WILL ALSO ADD WE'RE AT 3417 02:44:21,080 --> 02:44:23,480 GROUND ZERO. 3418 02:44:23,480 --> 02:44:24,560 THOSE OF US WHO HAVE BEEN 3419 02:44:24,560 --> 02:44:31,480 DOING THE WORK RECOGNIZE THERE 3420 02:44:31,480 --> 02:44:32,080 ARE STILL NEW CONCEPTS TO LOTS 3421 02:44:32,080 --> 02:44:34,680 OF FOLKS IN THE RESEARCH 3422 02:44:34,680 --> 02:44:38,440 ECOSYSTEM. 3423 02:44:38,440 --> 02:44:38,960 AND BECAUSE OF THOSE TWO 3424 02:44:38,960 --> 02:44:39,560 THINGS WE DO NEED TARGETED 3425 02:44:39,560 --> 02:44:43,840 FOCUSED EFFORT THAT WORKS 3426 02:44:43,840 --> 02:44:44,440 ACROSS THE SYSTEM TO ACTUALLY 3427 02:44:44,440 --> 02:44:49,320 HAVE A CHANGE. 3428 02:44:49,320 --> 02:44:49,880 AND WE NEED THAT WORK TO BE 3429 02:44:49,880 --> 02:44:50,480 DONE BY PEOPLE WITH EXPERTISE 3430 02:44:50,480 --> 02:44:52,160 AND EXPERIENCE WHICH LARGELY 3431 02:44:52,160 --> 02:45:02,680 IS MISSING AND A LOT OF SPOTS. 3432 02:45:05,120 --> 02:45:08,960 >>FIRST OF ALL THANK YOU ALL 3433 02:45:08,960 --> 02:45:12,000 THIS ISSUE IS IMPORTANT TO 3434 02:45:12,000 --> 02:45:17,080 ADDRESS FOR A MORE INCLUSIVE 3435 02:45:17,080 --> 02:45:20,520 ECOSYSTEM. 3436 02:45:20,520 --> 02:45:21,440 BUT I WOULD LOVE TO HEAR FROM 3437 02:45:21,440 --> 02:45:28,640 THE COCHAIRS ABOUT THE VISION 3438 02:45:28,640 --> 02:45:35,560 AND MISSION STATEMENT HOW 3439 02:45:35,560 --> 02:45:36,160 WOULD YOU RESHAPE THAT IN A 3440 02:45:36,160 --> 02:45:38,920 WAY THAT CAPTURES THE MISSION 3441 02:45:38,920 --> 02:45:44,560 WE ARE TRYING TO HAVE? 3442 02:45:44,560 --> 02:45:46,600 >>I CAN TAKE THAT. 3443 02:45:46,600 --> 02:45:49,920 THIS IS LISA. 3444 02:45:49,920 --> 02:45:51,240 THE LAST TWO WORDS ARE 3445 02:45:51,240 --> 02:45:52,800 REDUCING DISABILITY ALWAYS 3446 02:45:52,800 --> 02:45:55,040 SUGGEST TO ELIMINATE THE LAST 3447 02:45:55,040 --> 02:45:55,680 TWO WORDS. 3448 02:45:55,680 --> 02:45:59,480 BECAUSE FOR MANY OF US WITH 3449 02:45:59,480 --> 02:46:01,000 DISABILITIES WE DON'T WANT TO 3450 02:46:01,000 --> 02:46:06,920 BE REDUCED SO I THINK THAT IT 3451 02:46:06,920 --> 02:46:10,760 SIMPLY PERPETUATES THE ABLEST 3452 02:46:10,760 --> 02:46:14,240 ATTITUDES SO WE HAVE VERY 3453 02:46:14,240 --> 02:46:14,800 MODEST JUST CHANGE THE WORDS 3454 02:46:14,800 --> 02:46:23,600 IN THE MISSION STATEMENT 3455 02:46:23,600 --> 02:46:23,960 BONNIE OR STEVE? 3456 02:46:23,960 --> 02:46:24,480 >>WE HAVE LANGUAGE IN THE 3457 02:46:24,480 --> 02:46:25,920 REPORT AND THAT IS A GOOD 3458 02:46:25,920 --> 02:46:27,000 FIRST STEP WITH THE QUICK 3459 02:46:27,000 --> 02:46:30,840 ACTION ITEM BUT WE ENCOURAGE A 3460 02:46:30,840 --> 02:46:31,440 DEEPER RECONSIDERATION OF THE 3461 02:46:31,440 --> 02:46:34,040 MISSION STATEMENT WITH DIVERSE 3462 02:46:34,040 --> 02:46:34,600 PERSPECTIVES. 3463 02:46:34,600 --> 02:46:38,840 WE DID NOT WANT TO PRETEND WE 3464 02:46:38,840 --> 02:46:40,640 WERE EXAMINING THIS LANGUAGE 3465 02:46:40,640 --> 02:46:43,480 THROUGH FULLY INTERSECTIONAL 3466 02:46:43,480 --> 02:46:52,240 LENS AND THAT SPARKED AN IDEA 3467 02:46:52,240 --> 02:46:52,920 TO RE-EXAMINE THIS FROM 3468 02:46:52,920 --> 02:46:53,400 DIFFERENT DIMENSIONS AND 3469 02:46:53,400 --> 02:46:58,880 DIFFERENT PERSPECTIVES TO MAKE 3470 02:46:58,880 --> 02:46:59,480 SURE IT SHOULDN'T BE MORE THAN 3471 02:46:59,480 --> 02:47:00,680 JUST THE REMOVAL BUT 3472 02:47:00,680 --> 02:47:02,200 ADVOCATING RIGHT NOW FOR THE 3473 02:47:02,200 --> 02:47:05,280 REMOVAL OF THOSE TWO WORDS BUT 3474 02:47:05,280 --> 02:47:07,320 ALSO PUSHING FOR FURTHER 3475 02:47:07,320 --> 02:47:09,600 CONSIDERATION. 3476 02:47:09,600 --> 02:47:16,760 >>THANK YOU FOR SHARING THAT. 3477 02:47:16,760 --> 02:47:25,640 >>IT SEEMS TO ME THE IDEA OF 3478 02:47:25,640 --> 02:47:27,720 REMOVING THOSE WORDS FROM THE 3479 02:47:27,720 --> 02:47:33,040 NIH MISSION STATEMENT IS A 3480 02:47:33,040 --> 02:47:33,600 FANTASTIC AND IMPORTANT IDEA 3481 02:47:33,600 --> 02:47:34,160 AND SHOULD HAVE BEEN DONE 3482 02:47:34,160 --> 02:47:34,440 YEARS AGO. 3483 02:47:34,440 --> 02:47:35,840 BUT THE IDEA OF HAVING A 3484 02:47:35,840 --> 02:47:40,960 SEPARATE OFFICE FOR 3485 02:47:40,960 --> 02:47:46,680 DISABILITIES SEPARATES THE 3486 02:47:46,680 --> 02:47:49,720 EFFORT THAT I THINK OF AS ALL 3487 02:47:49,720 --> 02:47:57,800 INCLUSIVE MAYBE I'M BEING 3488 02:47:57,800 --> 02:48:00,720 INSENSITIVE BUT TO HAVE THAT 3489 02:48:00,720 --> 02:48:04,720 REMOVED BUT THAT DOES NOT 3490 02:48:04,720 --> 02:48:08,600 INCLUDE DISABILITY. 3491 02:48:08,600 --> 02:48:13,760 SO THAT DOESN'T RESONATE MAYBE 3492 02:48:13,760 --> 02:48:15,800 HAVING A SUB OFFICE WITHIN 3493 02:48:15,800 --> 02:48:22,480 WOULD MAKE MORE SENSE TO BUT 3494 02:48:22,480 --> 02:48:22,920 UNDER THAT UMBRELLA? 3495 02:48:22,920 --> 02:48:26,360 SO I APOLOGIZE IF I'M BEING 3496 02:48:26,360 --> 02:48:26,960 INSENSITIVE I DON'T MEAN TO BE 3497 02:48:26,960 --> 02:48:28,200 BUT I WOULD LIKE TO BE 3498 02:48:28,200 --> 02:48:31,360 ALL-INCLUSIVE AND I FEEL LIKE 3499 02:48:31,360 --> 02:48:33,280 THAT HAS BEEN THE SPIRIT OF 3500 02:48:33,280 --> 02:48:36,320 THAT INITIATIVE. 3501 02:48:36,320 --> 02:48:39,720 >>THERE IS AN OFFICE SO ONE 3502 02:48:39,720 --> 02:48:43,640 WOULD ARGUE IS NOT A SIMILAR 3503 02:48:43,640 --> 02:48:47,240 PARADIGM THERE THERE IS NOT 3504 02:48:47,240 --> 02:48:52,800 PARITY FOR WOMEN IN RESEARCHER 3505 02:48:52,800 --> 02:48:53,360 IN THE WORKFORCE SO IT IS A 3506 02:48:53,360 --> 02:48:53,920 SIMILAR DIMENSION AND TO BE 3507 02:48:53,920 --> 02:48:54,560 CLEAR THIS IS NOT JUST ABOUT 3508 02:48:54,560 --> 02:48:56,600 WORKFORCE IT'S ALSO ABOUT 3509 02:48:56,600 --> 02:48:58,440 RESEARCH AND MAKING SURE 3510 02:48:58,440 --> 02:48:59,280 DISABLED PEOPLE ARE INCLUDED 3511 02:48:59,280 --> 02:49:02,560 IN TRIALS. 3512 02:49:02,560 --> 02:49:04,680 I WAS LISTENING TO THE PRIOR 3513 02:49:04,680 --> 02:49:07,680 CONVERSATION THERE WAS NO 3514 02:49:07,680 --> 02:49:09,720 DISCUSSION ON THE 3515 02:49:09,720 --> 02:49:10,040 ACCESSIBILITY. 3516 02:49:10,040 --> 02:49:13,000 THAT IS PROBLEMATIC. 3517 02:49:13,000 --> 02:49:20,040 THAT IS NEEDED TO MAKE SURE 3518 02:49:20,040 --> 02:49:20,520 RESEARCH IS EQUITABLY 3519 02:49:20,520 --> 02:49:21,240 ACCESSIBLE SO THESE THINGS AND 3520 02:49:21,240 --> 02:49:25,840 THESE IDEAS STREAMING ACROSS 3521 02:49:25,840 --> 02:49:26,440 THE WHOLE ENTERPRISE FROM OUR 3522 02:49:26,440 --> 02:49:28,440 PERSPECTIVE AND YOU ARE RIGHT 3523 02:49:28,440 --> 02:49:34,520 IT IS UNDER OUR PURVIEW WITH 3524 02:49:34,520 --> 02:49:35,040 THOSE EFFORTS AND AS WE 3525 02:49:35,040 --> 02:49:36,440 OUTLINED IN THE REPORT WE ARE 3526 02:49:36,440 --> 02:49:40,040 VERY MUCH IN LOCKSTEP WITH 3527 02:49:40,040 --> 02:49:45,200 THESE OFFICES BUT THERE IS 3528 02:49:45,200 --> 02:49:49,960 RECOGNITION TO BE EFFECTIVE 3529 02:49:49,960 --> 02:49:50,520 THERE NEEDS TO BE A SEPARATE 3530 02:49:50,520 --> 02:49:55,080 FOCAL EFFORT OF FOLKS WITH 3531 02:49:55,080 --> 02:49:57,440 EXPERTISE AND STAFF WITH 3532 02:49:57,440 --> 02:49:57,920 EXPERTISE TO UNDERSTAND 3533 02:49:57,920 --> 02:50:02,720 ACCESSIBILITY AND ABLEST AM 3534 02:50:02,720 --> 02:50:05,720 AND RESEARCH DATA OF ALL 3535 02:50:05,720 --> 02:50:09,240 DIMENSIONS. 3536 02:50:09,240 --> 02:50:14,200 >>THE CONSULATE OFFICE FOR 3537 02:50:14,200 --> 02:50:16,520 THE OFFICE OF EQUITY DIVERSION 3538 02:50:16,520 --> 02:50:22,200 HERE AT AND IAH FOR ACCESS 3539 02:50:22,200 --> 02:50:27,040 ISSUES THAT BUT ALSO RESEARCH 3540 02:50:27,040 --> 02:50:28,520 LOOKS AT HOW THAT TRANSLATES 3541 02:50:28,520 --> 02:50:34,240 INTO FUNDED RESEARCH ECOSYSTEM 3542 02:50:34,240 --> 02:50:34,800 AND THEN THE ISSUE OF HEALTH 3543 02:50:34,800 --> 02:50:37,720 DISPARITIES THAT IS LED BY THE 3544 02:50:37,720 --> 02:50:39,720 NATIONAL MINORITY IN 3545 02:50:39,720 --> 02:50:42,960 COLLABORATIONS WITH ARC WE ARE 3546 02:50:42,960 --> 02:50:50,560 ALL BROUGHT TOGETHER WITH THIS 3547 02:50:50,560 --> 02:50:54,560 PLAN. 3548 02:50:54,560 --> 02:50:55,480 >>AGAIN A CLARIFICATION SO 3549 02:50:55,480 --> 02:50:58,800 ARE WE TALKING ABOUT LINE 3550 02:50:58,800 --> 02:51:02,680 OFFICE UNDER THE DIRECTOR OR 3551 02:51:02,680 --> 02:51:03,040 OFFICE AT EACH? 3552 02:51:03,040 --> 02:51:05,880 >>MAYBE WE'RE GETTING A 3553 02:51:05,880 --> 02:51:06,560 LITTLE AHEAD OF OURSELVES. 3554 02:51:06,560 --> 02:51:10,040 I THINK THE COCHAIRS HAVE 3555 02:51:10,040 --> 02:51:14,960 ARTICULATED VERY CLEARLY THE 3556 02:51:14,960 --> 02:51:19,080 RATIONALE OF WHY THEY FEEL A 3557 02:51:19,080 --> 02:51:22,160 FOCUSED APPROACH IS REQUIRED. 3558 02:51:22,160 --> 02:51:23,200 WHEN WE TALK ABOUT THE OFFICES 3559 02:51:23,200 --> 02:51:28,840 OF NIH THEIR OFFICES UPPERCASE 3560 02:51:28,840 --> 02:51:34,280 AND LOWERCASE O SOME ARE 3561 02:51:34,280 --> 02:51:34,800 APPROPRIATED SUCH AS THE 3562 02:51:34,800 --> 02:51:37,280 OFFICE OF RESEARCH FOR WOMEN'S 3563 02:51:37,280 --> 02:51:40,280 HEALTH AND OTHERS WHICH ARE 3564 02:51:40,280 --> 02:51:45,400 NOT WITH MORE ADMINISTRATIVE 3565 02:51:45,400 --> 02:51:47,480 DEVICES TO HELP US AS AN 3566 02:51:47,480 --> 02:51:53,800 ORGANIZATION KEEPING TABS ON 3567 02:51:53,800 --> 02:51:54,880 THINGS. 3568 02:51:54,880 --> 02:51:58,520 SO WHAT I WOULD HOPE THE 3569 02:51:58,520 --> 02:52:01,720 ADVISORY COUNCIL WOULD DO AND 3570 02:52:01,720 --> 02:52:04,720 WE ARE GETTING THAT SENSE AS 3571 02:52:04,720 --> 02:52:07,120 TO WHETHER OR NOT YOU ARE 3572 02:52:07,120 --> 02:52:09,280 SUPPORTIVE OF THIS AND THEN 3573 02:52:09,280 --> 02:52:18,600 THE ONUS COMES BACK TO THE 3574 02:52:18,600 --> 02:52:19,160 OFFICE OF THE DIRECTOR ALONG 3575 02:52:19,160 --> 02:52:19,760 WITH OTHER COLLEAGUES AND NIH 3576 02:52:19,760 --> 02:52:23,160 TO BEGIN TO FIGURE OUT THE 3577 02:52:23,160 --> 02:52:28,720 IMPLEMENTATION WHICH OF COURSE 3578 02:52:28,720 --> 02:52:29,240 WE WILL BRING BACK TO THIS 3579 02:52:29,240 --> 02:52:29,840 GROUP BECAUSE THAT IS RESEARCH 3580 02:52:29,840 --> 02:52:30,880 WHICH IS PART OF THE 3581 02:52:30,880 --> 02:52:31,200 FEEDBACK. 3582 02:52:31,200 --> 02:52:35,000 SO I DON'T THINK, I KNOW WE 3583 02:52:35,000 --> 02:52:40,720 CANNOT SOLVE THE NATURE OF THE 3584 02:52:40,720 --> 02:52:42,880 OFFICE SHOULD IT BE REMITTED 3585 02:52:42,880 --> 02:52:44,200 THIS AFTERNOON. 3586 02:52:44,200 --> 02:52:51,680 RATHER A MORE GLOBAL QUESTION 3587 02:52:51,680 --> 02:52:52,280 IS THE ACD SUPPORTIVE OF THIS 3588 02:52:52,280 --> 02:52:52,520 REPORT? 3589 02:52:52,520 --> 02:52:53,080 I HAVE NOT HEARD ANYTHING TO 3590 02:52:53,080 --> 02:52:55,640 THE CONTRARY. 3591 02:52:55,640 --> 02:53:01,720 >>I AM STRONGLY SUPPORT HE. 3592 02:53:01,720 --> 02:53:03,120 >>SO UNLESS THERE ARE 3593 02:53:03,120 --> 02:53:08,880 ADDITIONAL COMMENTS WHY MAYBE 3594 02:53:08,880 --> 02:53:10,760 IT'S NOT THE POINT TO CALL TO 3595 02:53:10,760 --> 02:53:12,760 QUESTION ARE THERE ANY 3596 02:53:12,760 --> 02:53:23,120 ADDITIONAL COMMENTS? 3597 02:53:25,440 --> 02:53:25,920 SO THE QUESTION IS CALLED IS 3598 02:53:25,920 --> 02:53:26,400 ANYBODY WANT TO MAKE A 3599 02:53:26,400 --> 02:53:26,640 MOTION? 3600 02:53:26,640 --> 02:53:32,040 >>IS THERE ADDITIONAL 3601 02:53:32,040 --> 02:53:36,800 DISCUSSION TO THIS REPORT FROM 3602 02:53:36,800 --> 02:53:42,040 THE ACD FROM A WORKING GROUP 3603 02:53:42,040 --> 02:53:42,600 WHO ACCEPTED THAT FROM THE 3604 02:53:42,600 --> 02:53:42,920 SUBCOMMITTEE? 3605 02:53:42,920 --> 02:53:44,440 I DON'T SEE ANY ADDITIONAL. 3606 02:53:44,440 --> 02:53:48,840 ALL THOSE IN FAVOR? 3607 02:53:48,840 --> 02:53:54,160 ALL THOSE OPPOSED? 3608 02:53:54,160 --> 02:54:00,240 ANYBODY ABSTAINING? 3609 02:54:00,240 --> 02:54:06,120 SO THE REPORT IS ACCEPTED AND 3610 02:54:06,120 --> 02:54:09,760 AGAIN AS I HAVE INDICATED WE 3611 02:54:09,760 --> 02:54:11,760 WILL TAKE US UNDER 3612 02:54:11,760 --> 02:54:13,680 CONSIDERATION AND WILL BE 3613 02:54:13,680 --> 02:54:17,440 REPORTING BACK THOSE TO THE 3614 02:54:17,440 --> 02:54:22,720 ACD AND THE WORKING GROUP SO I 3615 02:54:22,720 --> 02:54:26,760 WANT TO THINK FIRST OF ALL THE 3616 02:54:26,760 --> 02:54:27,280 SUBCOMMITTEE FOR EXCELLENT 3617 02:54:27,280 --> 02:54:29,880 WORK IN THE PERIOD GROUP FOR 3618 02:54:29,880 --> 02:54:35,200 THEIR INPUT AND NOW THANK YOU 3619 02:54:35,200 --> 02:54:38,200 TO THE ACD FOR THEIR 3620 02:54:38,200 --> 02:54:44,000 CONSIDERATION AS WELL. 3621 02:54:44,000 --> 02:54:49,120 >>SO NOW WE'LL JUST HAD TO 3622 02:54:49,120 --> 02:54:54,240 LUNCH BREAK WILL BE BACK AT 3623 02:54:54,240 --> 02:54:54,760 1:15 P.M. FOR AFTERNOON 3624 02:54:54,760 --> 02:54:55,080 CONVERSATION. 3625 02:54:55,080 --> 02:54:55,760 THANK YOU. 3626 02:54:55,760 --> 02:54:58,480 >>WE WILL GO AHEAD AND GET 3627 02:54:58,480 --> 02:54:58,720 STARTED. 3628 02:54:58,720 --> 02:54:59,680 I EVERYONE ENJOYED THEIR LUNCH 3629 02:54:59,680 --> 02:55:00,680 BREAK. 3630 02:55:00,680 --> 02:55:03,400 WE WILL MOVE ON TO THE FINAL 3631 02:55:03,400 --> 02:55:08,920 PRESENTATION OF THE DAY. 3632 02:55:08,920 --> 02:55:11,400 LAST BUT DEFINITELY ABSOLUTELY 3633 02:55:11,400 --> 02:55:20,640 NOT LEAST WITH AN IMPORTANT LOTT 3634 02:55:20,640 --> 02:55:25,960 TWO YEARS? 3635 02:55:25,960 --> 02:55:26,880 FEBRUARY 2021. 3636 02:55:26,880 --> 02:55:30,840 THE LAST TWO YEARS. 3637 02:55:30,840 --> 02:55:34,840 SO DOCTOR JOHNSON DIRECTOR FOR 3638 02:55:34,840 --> 02:55:42,080 MANAGEMENT COCHAIR AND OUR NEW 3639 02:55:42,080 --> 02:55:44,920 COCHAIR THAT YOU HEARD FROM 3640 02:55:44,920 --> 02:55:50,080 YESTERDAY AND MYSELF AND WE 3641 02:55:50,080 --> 02:55:50,680 WILL BE GOING OVER MOST OF THE 3642 02:55:50,680 --> 02:56:00,080 PRESENTATION OF THE DEPUTY WHO 3643 02:56:00,080 --> 02:56:00,680 WILL BE PROVIDING A PORTION OF 3644 02:56:00,680 --> 02:56:01,080 THE PRESENTATION. 3645 02:56:01,080 --> 02:56:04,800 I WILL TURN IT OVER TO YOU. 3646 02:56:04,800 --> 02:56:05,120 >>THANK YOU. 3647 02:56:05,120 --> 02:56:07,720 GOOD AFTERNOON AND I AM 3648 02:56:07,720 --> 02:56:08,880 DELIGHTED TO LEADERS 3649 02:56:08,880 --> 02:56:12,480 PRESENTATION ON BEHALF OF THE 3650 02:56:12,480 --> 02:56:14,880 COCHAIRS, UNITED COMMITTEE 3651 02:56:14,880 --> 02:56:18,600 , AND ALL THE MEMBERS OF UNITE 3652 02:56:18,600 --> 02:56:19,680 WHO HAS PUT A AMAZING AMOUNT 3653 02:56:19,680 --> 02:56:25,600 OF WORK AND WE WILL PROVIDE AN 3654 02:56:25,600 --> 02:56:31,600 UPDATE TO THE ACD. 3655 02:56:31,600 --> 02:56:32,200 AND MONICA WILL JUMP IN FOR A 3656 02:56:32,200 --> 02:56:34,800 PIECE AS WELL. 3657 02:56:34,800 --> 02:56:38,880 SO AS WE THINK ABOUT UNITE, IT 3658 02:56:38,880 --> 02:56:44,560 IS A THINK TANK FROM THE 3659 02:56:44,560 --> 02:56:51,920 STEERING COMMITTEE ON BEHALF 3660 02:56:51,920 --> 02:56:53,200 OF THE COMMUNITY TO GENERATE 3661 02:56:53,200 --> 02:56:54,080 BOLD IDEAS TO MOVE US FORWARD 3662 02:56:54,080 --> 02:56:58,720 IN THIS REALM OF DIVERSITY 3663 02:56:58,720 --> 02:57:00,520 EQUITY INCLUSION 3664 02:57:00,520 --> 02:57:01,680 ACCESSIBILITY. 3665 02:57:01,680 --> 02:57:02,880 AND THE MAIN FOCUS IS TO 3666 02:57:02,880 --> 02:57:09,080 ADDRESS STRUCTURAL RACISM AND 3667 02:57:09,080 --> 02:57:09,560 IN THE BIOMEDICAL AND 3668 02:57:09,560 --> 02:57:16,360 BEHAVIORAL RESEARCH ENTERPRISE 3669 02:57:16,360 --> 02:57:17,880 SO WE HAVE FINALIZED AND MADE 3670 02:57:17,880 --> 02:57:20,680 A PROGRESS REPORT AVAILABLE 3671 02:57:20,680 --> 02:57:24,960 FROM WHAT WE CONSIDER FY 21 / 3672 02:57:24,960 --> 02:57:25,960 22 OR THE ACTIONS WE HAVE 3673 02:57:25,960 --> 02:57:29,280 TAKEN WITH THE DISPARITIES OF 3674 02:57:29,280 --> 02:57:30,160 MINORITY HEALTH RESEARCH AND 3675 02:57:30,160 --> 02:57:34,760 WITH THE INTERNAL WORKFORCE 3676 02:57:34,760 --> 02:57:38,080 AND ON TOPICS THAT INTERSECT 3677 02:57:38,080 --> 02:57:40,600 WITH GREATER TRANSPARENCY AND 3678 02:57:40,600 --> 02:57:44,520 ACCOUNTABILITY ACROSS THE NIH 3679 02:57:44,520 --> 02:57:47,600 WITH BEHAVIORAL COMMUNITY. 3680 02:57:47,600 --> 02:57:49,600 AGAIN THIS IS A GREAT REPORT 3681 02:57:49,600 --> 02:57:50,200 I'M SURE IT'S BEEN A FATE MADE 3682 02:57:50,200 --> 02:57:56,800 AVAILABLE TO YOU. 3683 02:57:56,800 --> 02:57:58,720 AND THEN REPORTING OUT IN 3684 02:57:58,720 --> 02:58:05,040 TERMS OF THE FIVE COMMITTEES 3685 02:58:05,040 --> 02:58:07,320 AND AS WE HAVE COME TOGETHER 3686 02:58:07,320 --> 02:58:10,600 WITH THE LEADERSHIP, WE HAVE 3687 02:58:10,600 --> 02:58:11,200 DEVELOPED CHALLENGE STATEMENTS 3688 02:58:11,200 --> 02:58:15,000 AND GOALS SO WITH THE FOUR 3689 02:58:15,000 --> 02:58:17,480 FOCUS AREAS SHOWN HERE 3690 02:58:17,480 --> 02:58:19,000 ELEVATING HEALTH DISPARITIES 3691 02:58:19,000 --> 02:58:21,960 AND RESEARCH ACROSS THE 3692 02:58:21,960 --> 02:58:24,720 INSTITUTES AND CENTERS 3693 02:58:24,720 --> 02:58:26,120 PROMOTING THE BIOMEDICAL 3694 02:58:26,120 --> 02:58:29,800 RESEARCH ECOSYSTEM AND WITH 3695 02:58:29,800 --> 02:58:31,720 THAT WORKFORCE AND THEN 3696 02:58:31,720 --> 02:58:34,840 IMPROVEMENT ACCURACY AND 3697 02:58:34,840 --> 02:58:35,400 TRANSPARENCY OF RACIAL AND 3698 02:58:35,400 --> 02:58:38,560 ETHNIC EQUITY DATA. 3699 02:58:38,560 --> 02:58:49,000 BUT TO STEP BACK LOOKING AT 3700 02:58:53,720 --> 02:58:54,240 EVERY 26, 21 —- 2021, WITH 3701 02:58:54,240 --> 02:58:54,800 COMMITMENT FROM NH DIRECTOR 3702 02:58:54,800 --> 02:58:55,400 CALL AS WE WOULD IDENTIFY AND 3703 02:58:55,400 --> 02:58:56,560 ADDRESS STRUCTURAL RACISM WITH 3704 02:58:56,560 --> 02:58:59,320 BIOMEDICAL BEHAVIORAL 3705 02:58:59,320 --> 02:59:00,760 SCIENCES. 3706 02:59:00,760 --> 02:59:01,840 IF WE THINK ABOUT THE GENESIS 3707 02:59:01,840 --> 02:59:06,520 OF UNITE, THERE WAS A SERIES 3708 02:59:06,520 --> 02:59:07,120 OF INTERNAL MEETINGS AND AS I 3709 02:59:07,120 --> 02:59:11,720 THOUGHT ABOUT THOSE MEETINGS 3710 02:59:11,720 --> 02:59:12,960 , WHAT CAME TO ME IS WE TOOK A 3711 02:59:12,960 --> 02:59:17,520 STEP BACK AWAY FROM THE MIRROR. 3712 02:59:17,520 --> 02:59:18,040 WE HAD GOTTEN TOO CLOSE TO 3713 02:59:18,040 --> 02:59:19,480 REALLY UNDERSTAND EXACTLY THE 3714 02:59:19,480 --> 02:59:20,680 DEPTH OF THE PROBLEM WE HAD 3715 02:59:20,680 --> 02:59:22,520 WAS STRUCTURAL RACISM IN 3716 02:59:22,520 --> 02:59:25,560 BIOMEDICAL RESEARCH 3717 02:59:25,560 --> 02:59:26,200 ENTERPRISE. 3718 02:59:26,200 --> 02:59:27,080 THOSE CONVERSATIONS ARE A STEP 3719 02:59:27,080 --> 02:59:32,920 BACK FROM THE MIRROR TO HAVE A 3720 02:59:32,920 --> 02:59:33,440 BROADER VIEW ON WHAT THE 3721 02:59:33,440 --> 02:59:41,000 ISSUES WERE. 3722 02:59:41,000 --> 02:59:41,440 AS WELL AS ENGAGING 3723 02:59:41,440 --> 02:59:43,360 INDIVIDUALS FROM NIH AND ALL 3724 02:59:43,360 --> 02:59:48,640 DISCIPLINES SO THROUGH THIS 3725 02:59:48,640 --> 02:59:49,200 PROCESS WE HAVE BEEN ABLE TO 3726 02:59:49,200 --> 02:59:55,680 SHOW QUITE A BIT OF PROGRESS 3727 02:59:55,680 --> 02:59:57,760 THE MILESTONES WE HAVE 3728 02:59:57,760 --> 03:00:02,520 ACCOMPLISHED STARTING THE 3729 03:00:02,520 --> 03:00:03,040 SUMMER OF 2020 WITH THOSE 3730 03:00:03,040 --> 03:00:04,520 CONVERSATIONS ALL THE WAY UP 3731 03:00:04,520 --> 03:00:13,080 TO WHERE WE ARE NOW WITH THAT 3732 03:00:13,080 --> 03:00:13,520 INSTITUTIONAL PRIZE 3733 03:00:13,520 --> 03:00:14,240 COMPETITION TO BE LAUNCHED 3734 03:00:14,240 --> 03:00:18,880 THERE ARE A LOT OF EFFORTS 3735 03:00:18,880 --> 03:00:27,360 WITH EQUITY PLANS AND A LOT OF 3736 03:00:27,360 --> 03:00:27,920 WORK WE HAVE DONE INTERNALLY 3737 03:00:27,920 --> 03:00:33,840 RELATIVE TO THE WORKFORCE JUST 3738 03:00:33,840 --> 03:00:34,400 THINKING BACK OVER MY CAREER 3739 03:00:34,400 --> 03:00:35,560 HERE I HAVE BEEN AMAZED AT 3740 03:00:35,560 --> 03:00:36,640 WHAT WE HAVE ACCOMPLISHED IN 3741 03:00:36,640 --> 03:00:39,680 THE TIME WE HAVE SPENT WITH 3742 03:00:39,680 --> 03:00:42,200 UNITE. 3743 03:00:42,200 --> 03:00:44,200 AGAIN, THE FIVE COMMITTEES OR 3744 03:00:44,200 --> 03:00:47,360 THE FIVE WORK STREAMS AND YOUR 3745 03:00:47,360 --> 03:00:49,520 COMMITTEE IS UNDERSTANDING 3746 03:00:49,520 --> 03:00:51,440 STAKEHOLDER EXPERIENCES 3747 03:00:51,440 --> 03:00:55,640 COACHES LOOKING AT NEW 3748 03:00:55,640 --> 03:01:05,560 RESEARCH AND THEN IMPROVING 3749 03:01:05,560 --> 03:01:06,120 THE STRUCTURE INTERNALLY AND 3750 03:01:06,120 --> 03:01:06,720 THE TRANSPARENCY WHICH FOCUSED 3751 03:01:06,720 --> 03:01:07,600 ON COMMUNICATION AND 3752 03:01:07,600 --> 03:01:13,600 ACCOUNTABILITY WITH INTERNAL 3753 03:01:13,600 --> 03:01:14,200 AND EXTERNAL STAKEHOLDERS AND 3754 03:01:14,200 --> 03:01:14,880 THE COMMITTEE WHICH LOOKS AT 3755 03:01:14,880 --> 03:01:22,000 EXTRA RESEARCH IN THE GARDEN 3756 03:01:22,000 --> 03:01:22,600 POLICY STRUCTURES AND WHAT WE 3757 03:01:22,600 --> 03:01:23,160 NEED TO DO THERE AS WELL AND 3758 03:01:23,160 --> 03:01:24,480 THOSE WORK STREAMS HAVE COME 3759 03:01:24,480 --> 03:01:27,000 TOGETHER WITH THESE CHALLENGE 3760 03:01:27,000 --> 03:01:29,240 STATEMENTS THAT WE'RE MOVING 3761 03:01:29,240 --> 03:01:31,200 FORWARD WITH WITH THE FOCUS 3762 03:01:31,200 --> 03:01:38,320 AREAS AND THIS HAS HELPED US 3763 03:01:38,320 --> 03:01:43,320 TO HELP US OUT QUITE A BIT. 3764 03:01:43,320 --> 03:01:45,320 LOOKING AT THE CHALLENGE 3765 03:01:45,320 --> 03:01:53,920 STATEMENTS THIS HELPS US AND 3766 03:01:53,920 --> 03:01:54,520 WILL TAKE US TO A HIGHER LEVEL 3767 03:01:54,520 --> 03:01:55,120 GOING FORWARD AND WE CERTAINLY 3768 03:01:55,120 --> 03:01:56,120 RECOGNIZE WE HAVE CHALLENGES 3769 03:01:56,120 --> 03:01:57,120 AND ADDRESSING THOSE IT WILL 3770 03:01:57,120 --> 03:02:02,640 NOT BE AS EASY WHEN WE FIRST 3771 03:02:02,640 --> 03:02:07,360 STARTED OUT. 3772 03:02:07,360 --> 03:02:09,280 IT IS A MARATHON AND WE WILL 3773 03:02:09,280 --> 03:02:09,840 BE RUNNING THIS RACE AS LONG 3774 03:02:09,840 --> 03:02:11,920 AS WE CAN. 3775 03:02:11,920 --> 03:02:14,240 SO LOOK AT THESE CHALLENGE 3776 03:02:14,240 --> 03:02:17,440 STATEMENTS WITH THE ELEVATED 3777 03:02:17,440 --> 03:02:20,160 HEALTH DISPARITIES AND 3778 03:02:20,160 --> 03:02:22,400 RESEARCH THE MINORITY RESEARCH 3779 03:02:22,400 --> 03:02:28,280 IS PRIORITIZED RIGHT NOW AND 3780 03:02:28,280 --> 03:02:29,600 IS NOT ENOUGH FUNDING TO 3781 03:02:29,600 --> 03:02:32,240 ADDRESS THE GAPS THAT EXIST SO 3782 03:02:32,240 --> 03:02:41,480 WE WANT TO HELP FOCUS ON 3783 03:02:41,480 --> 03:02:42,120 PRIORITIZING WITH THE EFFORT 3784 03:02:42,120 --> 03:02:42,560 ACROSS NIH TO MAKE A 3785 03:02:42,560 --> 03:02:43,120 SIGNIFICANT CHANGE OVER THE 3786 03:02:43,120 --> 03:02:43,480 NEXT FIVE YEARS. 3787 03:02:43,480 --> 03:02:45,320 IN TERMS OF PROMOTING EQUITY 3788 03:02:45,320 --> 03:02:51,400 WITH BIOMEDICAL RESEARCH AGAIN 3789 03:02:51,400 --> 03:02:54,760 WE CAN SEE THE COMMUNITY WORK 3790 03:02:54,760 --> 03:03:04,040 THAT GRANT APPLICANTS SO AGAIN 3791 03:03:04,040 --> 03:03:06,440 WE WENT TO HELPING FOR IDEAS 3792 03:03:06,440 --> 03:03:14,960 OF THE DISPARITY OF YOU ARE 3793 03:03:14,960 --> 03:03:18,680 REPRESENTING A GROUP YOUR 3794 03:03:18,680 --> 03:03:21,640 SUCCESS RATE IS ON PAR WITH 3795 03:03:21,640 --> 03:03:27,080 OTHERS. 3796 03:03:27,080 --> 03:03:30,120 LOOKING AT THAT THIRD 3797 03:03:30,120 --> 03:03:31,480 CHALLENGE THE EQUITY AND THE 3798 03:03:31,480 --> 03:03:35,040 INTERNAL WORKFORCE, AGAIN NIH 3799 03:03:35,040 --> 03:03:41,720 INTERNALLY ANYWHERE ELSE YOU 3800 03:03:41,720 --> 03:03:42,200 MAY CONSIDER BE HAVE OUR 3801 03:03:42,200 --> 03:03:42,680 ISSUES THAT HAVE BEEN 3802 03:03:42,680 --> 03:03:44,920 IDENTIFIED AND WORKING TO 3803 03:03:44,920 --> 03:03:48,360 ACCOMPLISH SO HERE WE TRY WHEN 3804 03:03:48,360 --> 03:03:49,280 IT COMES TO HIRING AND 3805 03:03:49,280 --> 03:03:59,240 PROMOTIONS THERE IS EQUITY 3806 03:03:59,240 --> 03:03:59,800 DOESN'T GIVE YOU A GOOD IDEA 3807 03:03:59,800 --> 03:04:00,360 WHAT YOUR BACKGROUND MAY BE 3808 03:04:00,360 --> 03:04:00,960 WHICH COULD BE THE CASE RIGHT 3809 03:04:00,960 --> 03:04:01,480 NOW SO THERE IS A LOT OF 3810 03:04:01,480 --> 03:04:02,840 EFFORT WE ARE COMING UP WITH 3811 03:04:02,840 --> 03:04:09,280 NEW WAYS TO SUSTAIN WORKER 3812 03:04:09,280 --> 03:04:11,600 EQUITABLE TO MAKE SURE WE ARE 3813 03:04:11,600 --> 03:04:12,240 ON —- ARE VERY INCLUSIVE AS WE 3814 03:04:12,240 --> 03:04:19,920 DO HIRING AND WITH PROMOTIONS 3815 03:04:19,920 --> 03:04:21,320 AND WITH THE FOCUSED AREAS 3816 03:04:21,320 --> 03:04:23,200 IMPROVING THE TRANSPARENCY AND 3817 03:04:23,200 --> 03:04:29,000 THAT EQUITY DATA AGAIN, IT IS 3818 03:04:29,000 --> 03:04:29,920 A BIG DEAL IF YOU HEARD THE 3819 03:04:29,920 --> 03:04:30,520 CONVERSATION EARLIER NOT JUST 3820 03:04:30,520 --> 03:04:32,920 IN THE SCIENTIFIC REALM BUT IT 3821 03:04:32,920 --> 03:04:33,800 IS IMPORTANT IN TERMS OF WHAT 3822 03:04:33,800 --> 03:04:39,400 WE DO AND HOW WE STAFF. 3823 03:04:39,400 --> 03:04:40,120 WE WILL ADDRESS ISSUES OF 3824 03:04:40,120 --> 03:04:45,400 STRUCTURAL RACISM TO 3825 03:04:45,400 --> 03:04:46,000 UNDERSTAND WHERE THE PROBLEMS 3826 03:04:46,000 --> 03:04:46,560 ARE AND DATA IS ONE WAY THAT 3827 03:04:46,560 --> 03:04:48,200 WILL GET US THERE. 3828 03:04:48,200 --> 03:04:49,560 SO TO BE MORE TRANSPARENT 3829 03:04:49,560 --> 03:04:58,360 ABOUT THAT AS WE MOVE FORWARD. 3830 03:04:58,360 --> 03:04:59,440 BUT UNITE, WE COME HERE AND 3831 03:04:59,440 --> 03:05:00,000 TALK ABOUT UNITE BUT AS YOU 3832 03:05:00,000 --> 03:05:08,800 CAN IMAGINE IT'S NOT AN 3833 03:05:08,800 --> 03:05:09,400 OPERATION BY ITSELF WE ARE IN 3834 03:05:09,400 --> 03:05:09,960 THE WHOLE NIH ECOSYSTEM AND 3835 03:05:09,960 --> 03:05:10,560 THERE'S A LOT OF OTHER EFFORTS 3836 03:05:10,560 --> 03:05:10,840 GOING ON. 3837 03:05:10,840 --> 03:05:13,760 NOT OPERATING IN A VACUUM. 3838 03:05:13,760 --> 03:05:15,200 WE WORK WITH GROUPS ACROSS THE 3839 03:05:15,200 --> 03:05:16,240 NIH BUT THERE ARE OTHER 3840 03:05:16,240 --> 03:05:19,760 INITIATIVES WE ARE ENGAGED IN 3841 03:05:19,760 --> 03:05:26,600 TERMS OF THE STRATEGIC PLAN 3842 03:05:26,600 --> 03:05:34,840 AND ALL OF THESE EFFORTS 3843 03:05:34,840 --> 03:05:36,840 ADDRESS A NUMBER OF DIFFERENT 3844 03:05:36,840 --> 03:05:40,520 ACTIVITIES WITH OBJECTIVES AND 3845 03:05:40,520 --> 03:05:42,440 RESEARCH CAPACITY AND RESEARCH 3846 03:05:42,440 --> 03:05:47,120 CONDUCT COST-CUTTING THINGS 3847 03:05:47,120 --> 03:05:55,760 PUBLIC HEALTH CHALLENGES 3848 03:05:55,760 --> 03:05:57,240 COLLABORATIVE SCIENCE AND DATA 3849 03:05:57,240 --> 03:05:57,880 SCIENCE WITH THE RACIAL EQUITY 3850 03:05:57,880 --> 03:06:02,680 THAT WE OFTEN USE TO MAKE SURE 3851 03:06:02,680 --> 03:06:03,200 THAT WE ARE NOT LEAVING 3852 03:06:03,200 --> 03:06:05,400 SOMEONE OUT BEHIND. 3853 03:06:05,400 --> 03:06:08,440 THEY HAVE A GREAT UMBRELLA 3854 03:06:08,440 --> 03:06:11,160 HERE AT NIH AND TALKING TO 3855 03:06:11,160 --> 03:06:16,960 OTHER ORGANIZATIONS THEY ARE 3856 03:06:16,960 --> 03:06:17,560 PRETTY MUCH AMAZED AND WONDER 3857 03:06:17,560 --> 03:06:20,240 HOW WE KEEP IT ALL TOGETHER 3858 03:06:20,240 --> 03:06:22,920 AND WE DO A PRETTY GOOD JOB OF 3859 03:06:22,920 --> 03:06:23,960 THAT. 3860 03:06:23,960 --> 03:06:31,040 SO IN TERMS OF FOCUS AREAS AND 3861 03:06:31,040 --> 03:06:31,480 ONE ELEVATING HEALTH 3862 03:06:31,480 --> 03:06:40,040 DISPARITIES ACROSS THE SEAS WE 3863 03:06:40,040 --> 03:06:40,640 WANT TO LOOK AT SOME EXAMPLES 3864 03:06:40,640 --> 03:06:41,240 THE FIRST WHEN I WILL NOT GO 3865 03:06:41,240 --> 03:06:41,800 TO BECAUSE MONICA WILL TALK 3866 03:06:41,800 --> 03:06:44,840 ABOUT THAT BUT THAT IS THE 3867 03:06:44,840 --> 03:06:48,040 INITIATIVE. 3868 03:06:48,040 --> 03:06:55,880 BUT THIS IS SOMETHING THIS IS 3869 03:06:55,880 --> 03:06:57,320 SOMEWHAT OF A GAME CHANGER AND 3870 03:06:57,320 --> 03:06:57,960 MONICA WILL ADDRESS THAT LATER 3871 03:06:57,960 --> 03:07:00,720 INCLUDING THE STRUCTURE OF 3872 03:07:00,720 --> 03:07:09,600 WHICH THE IT IS BASED UPON. 3873 03:07:09,600 --> 03:07:11,520 SO LOOKING AT INEFFICIENT DATA 3874 03:07:11,520 --> 03:07:18,720 AND TRANSPARENCY WE ARE 3875 03:07:18,720 --> 03:07:21,680 LOOKING TO ENHANCE THE NIH 3876 03:07:21,680 --> 03:07:24,720 MISSION. 3877 03:07:24,720 --> 03:07:30,040 BUT THAT SHOULD NOT BE SO ONE 3878 03:07:30,040 --> 03:07:30,640 THING I'M ASKING THE IC TO DO 3879 03:07:30,640 --> 03:07:34,040 IS PRIORITIZE ACROSS THE 3880 03:07:34,040 --> 03:07:41,120 TRIALS RESEARCH AND WE LOOK 3881 03:07:41,120 --> 03:07:43,320 FORWARD TO THE ADDITION OF 3882 03:07:43,320 --> 03:07:47,120 RESEARCH ACTIVITIES IN THIS 3883 03:07:47,120 --> 03:07:48,720 AREA AND IN THE FOCUS AREA 3884 03:07:48,720 --> 03:07:50,840 NUMBER TWO PROMOTING EQUITY 3885 03:07:50,840 --> 03:07:53,680 WITH THE BIOMEDICAL RESEARCH 3886 03:07:53,680 --> 03:07:54,280 SYSTEM THERE IS A LOT OF 3887 03:07:54,280 --> 03:07:57,080 ACTIVITY GOING ON TO PROMOTE 3888 03:07:57,080 --> 03:07:59,120 DIVERSITY AND INCLUSION THIS 3889 03:07:59,120 --> 03:08:02,960 WEEKEND - - AND WITH THE 3890 03:08:02,960 --> 03:08:05,920 COMMITTEE HAS DEVELOPED HAS 3891 03:08:05,920 --> 03:08:11,960 DEVELOPED THE PARADIGM AND 3892 03:08:11,960 --> 03:08:14,240 WITH THE STAKEHOLDER 3893 03:08:14,240 --> 03:08:24,760 ENGAGEMENT SO PROMOTING EQUITY 3894 03:08:28,520 --> 03:08:29,320 AT OTHER INSTITUTIONS AT NIH 3895 03:08:29,320 --> 03:08:29,720 WITH POLICIES AND 3896 03:08:29,720 --> 03:08:31,240 PROCEDURES, CAREER PATHWAY AND 3897 03:08:31,240 --> 03:08:32,760 RESORTS ON THIS RESEARCH AND 3898 03:08:32,760 --> 03:08:33,360 RESOURCE CAPACITY AND MINORITY 3899 03:08:33,360 --> 03:08:35,160 SERVING INSTITUTIONS. 3900 03:08:35,160 --> 03:08:35,720 THERE IS A LOT OF WORK THEY 3901 03:08:35,720 --> 03:08:46,240 HAVE GOING ON IN THOSE AND THE 3902 03:08:49,800 --> 03:08:56,840 NEED TO THAT SCIENTIFIC TALENT 3903 03:08:56,840 --> 03:08:59,400 IS NURTURED AND ABLE TO BE 3904 03:08:59,400 --> 03:08:59,680 PROMOTED. 3905 03:08:59,680 --> 03:09:08,720 SO THAT PERSON IS MAKING TO 3906 03:09:08,720 --> 03:09:09,320 YOU MORE ABOUT AND I CAN IT 3907 03:09:09,320 --> 03:09:15,360 TALKS ABOUT INFORMATION AND TO 3908 03:09:15,360 --> 03:09:16,720 ADDRESS THIS BUT ALSO IN TERMS 3909 03:09:16,720 --> 03:09:23,680 OF EXPANDING PARTNERSHIPS K-12 3910 03:09:23,680 --> 03:09:27,360 INITIATIVE AND HOW WE CAN EVEN 3911 03:09:27,360 --> 03:09:28,120 REWARD INSTITUTIONS THAT DO A 3912 03:09:28,120 --> 03:09:38,400 GREAT JOB SO A LOT OF EFFORTS 3913 03:09:38,400 --> 03:09:38,960 TO MAKE CHANGES AND ADDRESS 3914 03:09:38,960 --> 03:09:46,120 THE CHALLENGES WE HAVE HERE. 3915 03:09:46,120 --> 03:09:49,160 AND WITH THE INTERNAL 3916 03:09:49,160 --> 03:09:56,000 WORKFORCE. 3917 03:09:56,000 --> 03:09:56,600 I'VE BEEN WITH NIH QUITE A BIT 3918 03:09:56,600 --> 03:09:58,880 OF TIME AND I AM IMPRESSED 3919 03:09:58,880 --> 03:10:00,760 WITH THIS NEW FOCUSED AND 3920 03:10:00,760 --> 03:10:05,400 CONCENTRATING WITH THE NIH 3921 03:10:05,400 --> 03:10:05,960 INTERNAL WORKFORCE WITH THE 3922 03:10:05,960 --> 03:10:12,800 INITIATIVES OF WITH THOSE 3923 03:10:12,800 --> 03:10:13,320 STAFF VOLUNTEERS SEPARATED 3924 03:10:13,320 --> 03:10:15,280 INTO DIFFERENT COMMUNITIES 3925 03:10:15,280 --> 03:10:22,440 ADDRESSING SPECIFIC ISSUES. 3926 03:10:22,440 --> 03:10:22,960 AND WE MAY NOT EVEN AND BE 3927 03:10:22,960 --> 03:10:27,920 AWARE OF. 3928 03:10:27,920 --> 03:10:31,200 BEEN LOOKING TO HAVE THE 3929 03:10:31,200 --> 03:10:31,840 PITCHER THAT YOU SEE DOWN ON 3930 03:10:31,840 --> 03:10:34,680 THE RIGHT IS ABOUT POWER OF 3931 03:10:34,680 --> 03:10:39,280 INCLUSIVE RECOGNITION THAT IS 3932 03:10:39,280 --> 03:10:43,160 NOW SPREAD THROUGHOUT THE 3933 03:10:43,160 --> 03:10:50,560 CAMPUS. 3934 03:10:50,560 --> 03:10:51,160 BUT NOW THIS BUILDING DOWN THE 3935 03:10:51,160 --> 03:10:51,760 HALL WITH THE AGENCIES COME 3936 03:10:51,760 --> 03:10:52,320 HERE AND SEE THAT AND SAY WE 3937 03:10:52,320 --> 03:10:55,240 NEED TO DO THAT YOU NEED TO 3938 03:10:55,240 --> 03:10:57,280 MAKE SURE WE ARE REPRESENTING 3939 03:10:57,280 --> 03:11:02,720 EVERYONE SO THAT HAS BEEN A 3940 03:11:02,720 --> 03:11:03,120 GREAT INITIATIVE. 3941 03:11:03,120 --> 03:11:06,800 SO IN THIS AREA A LOT OF 3942 03:11:06,800 --> 03:11:09,560 ACTIVITY IS GOING ON BECAUSE 3943 03:11:09,560 --> 03:11:14,200 THEY ARE RIGHT AT THE STAGE 3944 03:11:14,200 --> 03:11:15,400 AND THAT WILL HAPPEN THE NEXT 3945 03:11:15,400 --> 03:11:17,840 COUPLE OF MONTHS BUT WE HAVE A 3946 03:11:17,840 --> 03:11:20,920 LOT OF INITIATIVES ALONG THE 3947 03:11:20,920 --> 03:11:26,920 WAY AND WITH THOSE EQUITY 3948 03:11:26,920 --> 03:11:29,560 PLANS ALL ICS HAVE DEVELOPED 3949 03:11:29,560 --> 03:11:31,960 THEM. 3950 03:11:31,960 --> 03:11:34,880 THEY ARE LOOKING TO REVISE 3951 03:11:34,880 --> 03:11:43,440 THEM FOR WHAT IS HAPPENING AND 3952 03:11:43,440 --> 03:11:44,400 THEN LOOKING AT THE NIH 3953 03:11:44,400 --> 03:11:51,000 DIRECTOR'S AWARD AND TO BRING 3954 03:11:51,000 --> 03:11:51,520 FORWARD TO THE STEERING 3955 03:11:51,520 --> 03:11:54,120 COMMITTEE THE RECOMMENDATIONS 3956 03:11:54,120 --> 03:11:56,160 WITH THE NEW CAREER 3957 03:11:56,160 --> 03:12:01,840 DEVELOPMENT OPPORTUNITY AND 3958 03:12:01,840 --> 03:12:02,400 WITH LEADERSHIP DEVELOPMENT 3959 03:12:02,400 --> 03:12:03,160 BUT IT MAINLY FOCUSES AT THE 3960 03:12:03,160 --> 03:12:05,760 HIGHER LEVELS OF THE WORKFORCE 3961 03:12:05,760 --> 03:12:07,280 SO WE ARE DEVELOPING A CAREER 3962 03:12:07,280 --> 03:12:12,960 DEVELOPMENT PROGRAM SO THAT WE 3963 03:12:12,960 --> 03:12:17,640 CAN FILL A GAP LOOKING AT THE 3964 03:12:17,640 --> 03:12:26,000 DATA SO IT IS LAUNCHED AND HAS 3965 03:12:26,000 --> 03:12:26,600 BEEN APPROVED HUMAN RESOURCES 3966 03:12:26,600 --> 03:12:29,080 IS WORKING TO IMPLEMENT THAT 3967 03:12:29,080 --> 03:12:34,600 ACTIVITY SO IN TERMS OF FOCUS 3968 03:12:34,600 --> 03:12:43,200 AREA FOR SO WITH THE RACIAL 3969 03:12:43,200 --> 03:12:48,480 ETHNIC DATA. 3970 03:12:48,480 --> 03:12:53,280 AND THAT EQUALS SCIENCE IT'S 3971 03:12:53,280 --> 03:12:53,840 NOT JUST SCIENCE OF RESEARCH 3972 03:12:53,840 --> 03:12:55,080 ARENA BUT CERTAINLY IN THE 3973 03:12:55,080 --> 03:12:59,200 WORK OF THE COMMITTEE AND THE 3974 03:12:59,200 --> 03:13:00,760 WORKGROUPS ARE LOOKING UP AS 3975 03:13:00,760 --> 03:13:02,960 WELL SO WE ARE JUST SO 3976 03:13:02,960 --> 03:13:08,960 APPRECIATIVE THAT WE WILL TALK 3977 03:13:08,960 --> 03:13:09,480 MORE ABOUT THE LISTENING 3978 03:13:09,480 --> 03:13:10,080 SESSIONS AND THE OUTCOME FROM 3979 03:13:10,080 --> 03:13:10,760 THAT LATER ON IN THE 3980 03:13:10,760 --> 03:13:14,080 PRESENTATION SO WE WILL HEAR 3981 03:13:14,080 --> 03:13:16,080 MORE ABOUT THE DATA WE HAVE 3982 03:13:16,080 --> 03:13:20,880 COLLECTED AGAIN, A LOT OF 3983 03:13:20,880 --> 03:13:27,880 ACTIVITIES AND YOU KNOW THIS 3984 03:13:27,880 --> 03:13:28,440 QUITE WELL THAT IT'S EASY TO 3985 03:13:28,440 --> 03:13:28,760 GENERATE DATA. 3986 03:13:28,760 --> 03:13:34,760 TO PUT INTO A FORM THAT ALMOST 3987 03:13:34,760 --> 03:13:35,360 ANYONE CAN LOOK AT IT AND SAY 3988 03:13:35,360 --> 03:13:37,680 I SEE SOMETHING WE CAN WORK 3989 03:13:37,680 --> 03:13:38,920 ON. 3990 03:13:38,920 --> 03:13:44,240 AND WITH THE FOCUS AREA 3991 03:13:44,240 --> 03:13:45,200 LOOKING AT THE DATA TO MAKE 3992 03:13:45,200 --> 03:13:50,880 SURE WE ARE COMMUNICATING THE 3993 03:13:50,880 --> 03:13:51,440 DASHBOARDS AND THE COCHAIR 3994 03:13:51,440 --> 03:13:52,000 CORNER TO MAKE SURE WE ARE 3995 03:13:52,000 --> 03:13:53,960 SHARING OUR DATA SO EVERYONE 3996 03:13:53,960 --> 03:13:56,280 WILL KNOW WHAT WE ARE DOING 3997 03:13:56,280 --> 03:14:04,520 WITH THE INITIATIVE. 3998 03:14:04,520 --> 03:14:12,600 AND TO EXPAND EFFORTS TO 3999 03:14:12,600 --> 03:14:13,080 CONTINUE THE MARATHON. 4000 03:14:13,080 --> 03:14:13,520 KEEP EVALUATING THE 4001 03:14:13,520 --> 03:14:15,120 SHORT, MEDIUM, LONG-TERM 4002 03:14:15,120 --> 03:14:19,320 OBJECTIVES AS WE SELL INTO THE 4003 03:14:19,320 --> 03:14:22,720 FOCUS AREAS TO MAKE SURE THEY 4004 03:14:22,720 --> 03:14:23,720 ARE REPRESENTING THE ISSUES 4005 03:14:23,720 --> 03:14:27,960 THEY NEED TO DEAL WITH. 4006 03:14:27,960 --> 03:14:31,000 SO ALL THE WORK THAT'S GOING 4007 03:14:31,000 --> 03:14:32,880 ON THE INSTITUTES AND CENTERS 4008 03:14:32,880 --> 03:14:35,200 COME TOGETHER QUITE WELL TO 4009 03:14:35,200 --> 03:14:35,800 SHOW THAT YOU CAN REALLY MAKE 4010 03:14:35,800 --> 03:14:40,080 A DIFFERENCE TO MAKE THINGS 4011 03:14:40,080 --> 03:14:41,360 MORE INCLUSIVE AND EQUITABLE 4012 03:14:41,360 --> 03:14:43,800 AND TAKE THE TIME TO FOCUS. 4013 03:14:43,800 --> 03:14:51,160 SO NOW WE WILL TALK ABOUT THE 4014 03:14:51,160 --> 03:14:56,200 FOCUS AREA NUMBER ONE TO MEET 4015 03:14:56,200 --> 03:14:56,880 THAT PART OF THE 4016 03:14:56,880 --> 03:14:57,200 PRESENTATION. 4017 03:14:57,200 --> 03:15:00,600 >>THANK YOU DOCTOR JOHNSON I 4018 03:15:00,600 --> 03:15:03,320 AM DELIGHTED TO COVER THE AREA 4019 03:15:03,320 --> 03:15:07,200 THE FOCUS AREA WITH MINORITY 4020 03:15:07,200 --> 03:15:15,240 HEALTH RESEARCH. 4021 03:15:15,240 --> 03:15:16,320 SO AMONG THE GOALS IS TO 4022 03:15:16,320 --> 03:15:19,080 AUGMENT ONGOING FUTURE WORK IN 4023 03:15:19,080 --> 03:15:24,320 THIS SPACE TO FACILITATE AND 4024 03:15:24,320 --> 03:15:31,640 TO COMMUNICATE AND AMPLIFY AND 4025 03:15:31,640 --> 03:15:33,040 WITH THAT STRATEGIC PLAN IS 4026 03:15:33,040 --> 03:15:37,360 UNDER WAY AND AS PRESENTED IT 4027 03:15:37,360 --> 03:15:42,680 CONTINUES TO WORK DILIGENTLY 4028 03:15:42,680 --> 03:15:43,640 TO ANALYZE MINORITY HEALTH 4029 03:15:43,640 --> 03:15:45,720 DISPARITIES IN THE RESEARCH 4030 03:15:45,720 --> 03:15:47,360 PORTFOLIO WITH THE GOAL OF 4031 03:15:47,360 --> 03:15:48,640 INCREASING ACCURACY AND 4032 03:15:48,640 --> 03:15:51,120 EFFICIENCY WITH NIH FUNDING IN 4033 03:15:51,120 --> 03:15:59,000 THIS AREA. 4034 03:15:59,000 --> 03:15:59,400 AND WITH THE FUNDING 4035 03:15:59,400 --> 03:16:00,000 OPPORTUNITY ANNOUNCEMENTS THAT 4036 03:16:00,000 --> 03:16:02,000 INCLUDE A FOCUS ON MINORITY 4037 03:16:02,000 --> 03:16:06,560 HEALTH AND HEALTH DISPARITIES 4038 03:16:06,560 --> 03:16:07,360 RESEARCH AS JUST ONE IMPORTANT 4039 03:16:07,360 --> 03:16:08,880 METRIC ACQUIRED FRUSTRATION IN 4040 03:16:08,880 --> 03:16:11,600 THE PROCESS BUT ALSO LIKE TO 4041 03:16:11,600 --> 03:16:16,400 AMPLIFY THE INITIATIVES ACROSS 4042 03:16:16,400 --> 03:16:21,400 NIH. 4043 03:16:21,400 --> 03:16:22,720 SHOWS DATA THERE HAS BEEN A 4044 03:16:22,720 --> 03:16:25,120 CHANGE IN THE NUMBER OF 4045 03:16:25,120 --> 03:16:26,520 ANNOUNCEMENTS ANNOUNCED 4046 03:16:26,520 --> 03:16:29,720 EXPLICITLY INTERESTED IN 4047 03:16:29,720 --> 03:16:35,240 HEALTH DISPARITY RESEARCH 4048 03:16:35,240 --> 03:16:36,360 LOOKING AT NEW WAYS PUBLISHED 4049 03:16:36,360 --> 03:16:40,040 BETWEEN 2018 AND 2022. 4050 03:16:40,040 --> 03:16:46,520 COMPARED TO 2018 AND 2019 4051 03:16:46,520 --> 03:16:47,400 THINKING OF IS A PRE- PANDEMIC 4052 03:16:47,400 --> 03:16:49,680 THERE ARE OPPORTUNITIES 4053 03:16:49,680 --> 03:16:59,920 INDICATING A SPECIFIC INTEREST 4054 03:16:59,920 --> 03:17:00,960 IN WITH 2019 THROUGH 2020 OH 4055 03:17:00,960 --> 03:17:03,360 195 PERCENT INCREASE 43 4056 03:17:03,360 --> 03:17:07,560 PERCENTAGE POINTS AND CHANGING 4057 03:17:07,560 --> 03:17:13,440 FROM 2019 THROUGH 4058 03:17:13,440 --> 03:17:19,200 221250 PERCENT. 4059 03:17:19,200 --> 03:17:20,200 THE DATA IS THE DISTRIBUTION 4060 03:17:20,200 --> 03:17:24,680 OF FUNDING OPPORTUNITY 4061 03:17:24,680 --> 03:17:27,400 INTEREST ACROSS INSTITUTES AND 4062 03:17:27,400 --> 03:17:32,320 CENTERS AND OFFICES THAT IS 4063 03:17:32,320 --> 03:17:36,560 PRE- PANDEMIC AND THE GREEN 4064 03:17:36,560 --> 03:17:38,600 AND YELLOW AND DARK BLUE BARS 4065 03:17:38,600 --> 03:17:46,160 ARE 2020 THROUGH 2022 4066 03:17:46,160 --> 03:17:46,480 RESPECTIVELY. 4067 03:17:46,480 --> 03:17:47,080 OVERTIME YOU SEE A TREND WHERE 4068 03:17:47,080 --> 03:17:47,640 MORE FUNDING OPPORTUNITIES 4069 03:17:47,640 --> 03:17:48,800 WITH SOME DEGREE OF INTEREST 4070 03:17:48,800 --> 03:17:52,440 EXPRESSED IN THIS SPACE FOR 4071 03:17:52,440 --> 03:17:53,920 THOSE REPRESENTED IN THIS 4072 03:17:53,920 --> 03:17:59,200 FIGURE I WILL NOTE FOR THE 4073 03:17:59,200 --> 03:17:59,800 HEALTH DISPARITIES TO FOCUS DO 4074 03:17:59,800 --> 03:18:05,240 NOT REFLECT IC PRODUCTIVITY OR 4075 03:18:05,240 --> 03:18:05,760 THE THIS ON THESE TOPICS 4076 03:18:05,760 --> 03:18:08,360 RELATIVE TO THE OVERALL NUMBER 4077 03:18:08,360 --> 03:18:10,360 OF FUNDING OPPORTUNITY 4078 03:18:10,360 --> 03:18:19,200 ANNOUNCEMENTS AND THEN 4079 03:18:19,200 --> 03:18:19,800 RELATIVE TO THE IMMEDIATE PRE- 4080 03:18:19,800 --> 03:18:20,320 PANDEMIC YEARS THERE IS AN 4081 03:18:20,320 --> 03:18:26,280 INCREASED FOCUS ON THESE 4082 03:18:26,280 --> 03:18:27,080 TOPICS IN THE FUNDING 4083 03:18:27,080 --> 03:18:27,680 OPPORTUNITY OF MANY ICS WHICH 4084 03:18:27,680 --> 03:18:34,360 IS GREAT TO SEE. 4085 03:18:34,360 --> 03:18:35,680 AND THE MECHANISMS FOR THE 4086 03:18:35,680 --> 03:18:42,640 FUNDING OPPORTUNITIES 4087 03:18:42,640 --> 03:18:43,360 31 PERCENT ARE THE EQUIVALENT 4088 03:18:43,360 --> 03:18:50,880 FUNDING MECHANISMS ALSO THE 4089 03:18:50,880 --> 03:18:54,840 FOA IS JUST ONE MEASURE OF THE 4090 03:18:54,840 --> 03:18:55,400 IC INTEREST OR INVESTMENT IN 4091 03:18:55,400 --> 03:19:03,720 THIS AREA AND TO INCREASE AND 4092 03:19:03,720 --> 03:19:04,120 EXPRESS INTEREST. 4093 03:19:04,120 --> 03:19:04,720 THE IMPORTANT NEXT STEP WOULD 4094 03:19:04,720 --> 03:19:05,320 BE A DEEPER DIVE TO EXAMINE 4095 03:19:05,320 --> 03:19:08,560 THE NUMBER OF APPLICATIONS IN 4096 03:19:08,560 --> 03:19:08,960 RESPONSE TO THESE 4097 03:19:08,960 --> 03:19:09,520 OPPORTUNITIES AS WELL AS THE 4098 03:19:09,520 --> 03:19:14,840 ACTUAL AWARD MADE FOR THE 4099 03:19:14,840 --> 03:19:22,760 HEALTH DISPARITIES PROJECTS. 4100 03:19:22,760 --> 03:19:23,320 WE'VE DONE THAT JUST THROUGH 4101 03:19:23,320 --> 03:19:23,880 ONE EXAMPLE HERE A 2021 NIH 4102 03:19:23,880 --> 03:19:24,400 LED FUNDING OPPORTUNITY TO 4103 03:19:24,400 --> 03:19:24,960 UNDERSTAND AND ADDRESS THE 4104 03:19:24,960 --> 03:19:26,520 IMPACT OF STRUCTURAL 4105 03:19:26,520 --> 03:19:27,080 DISCRIMINATION ON MINORITY 4106 03:19:27,080 --> 03:19:28,840 HEALTH AND HEALTH DISPARITIES 4107 03:19:28,840 --> 03:19:33,440 THROUGH OBSERVATIONAL 4108 03:19:33,440 --> 03:19:35,080 RESEARCH. 4109 03:19:35,080 --> 03:19:43,160 WE WERE DELIGHTED 25 OFFICES 4110 03:19:43,160 --> 03:19:43,600 PARTICIPATED IN THIS 4111 03:19:43,600 --> 03:19:46,000 INITIATIVE THERE WAS A ROBUST 4112 03:19:46,000 --> 03:19:49,680 RESPONSE 23 PERCENT WERE 4113 03:19:49,680 --> 03:19:50,280 AWARDED INCLUDING 15 THROUGH 4114 03:19:50,280 --> 03:19:52,440 EARLY STAGE INVESTIGATORS 4115 03:19:52,440 --> 03:19:59,160 FUNDED PROJECTS THAT WERE 4116 03:19:59,160 --> 03:19:59,720 MOSTLY OBSERVATIONAL STUDIES 4117 03:19:59,720 --> 03:20:00,320 FOCUSED ON MULTIPLE POPULATION 4118 03:20:00,320 --> 03:20:00,960 GROUPS AND COVERING A RANGE OF 4119 03:20:00,960 --> 03:20:04,440 DISEASES OF CONDITIONS THAT 4120 03:20:04,440 --> 03:20:06,440 WERE CONSISTENT WITH THE 4121 03:20:06,440 --> 03:20:07,000 MISSION OF THE ORGANIZATION 4122 03:20:07,000 --> 03:20:13,720 SUPPORTING THE PROJECTS. 4123 03:20:13,720 --> 03:20:15,120 HERE IS A SUMMARY OF A CONTENT 4124 03:20:15,120 --> 03:20:18,000 ANALYSIS WITH NEW FUNDING 4125 03:20:18,000 --> 03:20:19,120 PUBLISHED SPECIFICALLY 2022 TO 4126 03:20:19,120 --> 03:20:24,080 INDICATE INTEREST OF THE 4127 03:20:24,080 --> 03:20:24,680 HEALTH DISPARITIES RESEARCH TO 4128 03:20:24,680 --> 03:20:25,200 UNDERSTAND THE AREAS OF 4129 03:20:25,200 --> 03:20:32,840 SPECIFIC EMPHASIS SO THERE ARE 4130 03:20:32,840 --> 03:20:33,440 SEVERAL COST-CUTTING THEMES 4131 03:20:33,440 --> 03:20:34,040 INCLUDING SOLICITING RESEARCH 4132 03:20:34,040 --> 03:20:35,680 TO UNDERSTAND ACROSS THE 4133 03:20:35,680 --> 03:20:42,880 LIFESPAN AMONG CHILDREN OLDER 4134 03:20:42,880 --> 03:20:43,360 ADULTS AND RESEARCH TO 4135 03:20:43,360 --> 03:20:43,920 INTEGRATE TO UNDERSTAND THE 4136 03:20:43,920 --> 03:20:44,360 RULES OF THE SOCIAL 4137 03:20:44,360 --> 03:20:44,880 DETERMINANTS OF HEALTH AS 4138 03:20:44,880 --> 03:20:47,960 DRIVERS OF HEALTH AND HEALTH 4139 03:20:47,960 --> 03:20:48,960 DISPARITIES. 4140 03:20:48,960 --> 03:20:51,840 OTHER THINGS INTERESTED IN 4141 03:20:51,840 --> 03:20:55,000 COMMUNITY RESEARCH MULTILEVEL 4142 03:20:55,000 --> 03:20:57,720 INTERVENTIONS. 4143 03:20:57,720 --> 03:20:58,840 IT ALSO HIGHLIGHTED THE 4144 03:20:58,840 --> 03:20:59,360 IMPORTANCE OF INCLUSIVE 4145 03:20:59,360 --> 03:21:01,640 PARTICIPATION IN RESEARCH AND 4146 03:21:01,640 --> 03:21:04,680 JUST ONE FEW EXAMPLES OF THE 4147 03:21:04,680 --> 03:21:07,480 DISEASE OF THE 2022 PUBLISHED 4148 03:21:07,480 --> 03:21:17,880 FUNDING OPPORTUNITIES. 4149 03:21:21,760 --> 03:21:22,880 >>THESE ARE SIX EXEMPLARS 4150 03:21:22,880 --> 03:21:23,480 JUST SELECTED TO EMPHASIZE THE 4151 03:21:23,480 --> 03:21:29,960 COST-CUTTING THEMES I WAS 4152 03:21:29,960 --> 03:21:30,520 IMPRESSED BY THE SUITE OF 4153 03:21:30,520 --> 03:21:32,960 FUNDING OPPORTUNITIES WITH 4154 03:21:32,960 --> 03:21:33,560 RACIAL EQUITY INITIATIVE WHICH 4155 03:21:33,560 --> 03:21:38,760 SEEKS TO IDENTIFY BOLD NEW 4156 03:21:38,760 --> 03:21:39,320 DIRECTIONS FOR OPERATIONS TO 4157 03:21:39,320 --> 03:21:43,920 HAVE A MANDATE RACIAL AND 4158 03:21:43,920 --> 03:21:46,680 ETHNIC WITH ADDICTION 4159 03:21:46,680 --> 03:21:46,960 OUTCOMES. 4160 03:21:46,960 --> 03:21:51,400 THIS IS MY LAST SLIDE IT'S A 4161 03:21:51,400 --> 03:21:52,440 LITTLE MORE ON CAMPUS WHICH 4162 03:21:52,440 --> 03:21:55,400 STANDS DIRECTLY FROM UNITE AND 4163 03:21:55,400 --> 03:21:56,800 SEEKS TO IMPLEMENT AND 4164 03:21:56,800 --> 03:22:03,000 EVALUATE HEALTH EQUITY FOCUS 4165 03:22:03,000 --> 03:22:03,680 STRUCTURAL INTERVENTIONS THAT 4166 03:22:03,680 --> 03:22:04,080 ARE COMMUNITY LED. 4167 03:22:04,080 --> 03:22:04,600 THIS IS IN CONTRAST TO THE 4168 03:22:04,600 --> 03:22:07,840 USUAL MODEL OF ACADEMIC ENDS 4169 03:22:07,840 --> 03:22:09,200 DECISIONS ARE BRINGING ONBOARD 4170 03:22:09,200 --> 03:22:15,720 COMMUNITY PARTNERS WHICH IS A 4171 03:22:15,720 --> 03:22:16,240 REAL INNOVATION SO WE LOOK 4172 03:22:16,240 --> 03:22:16,840 FORWARD TO WHAT COMES FROM THE 4173 03:22:16,840 --> 03:22:17,440 FUNDING OPPORTUNITIES OF ALL 4174 03:22:17,440 --> 03:22:20,840 THE EFFORTS TO INCREASE THE 4175 03:22:20,840 --> 03:22:21,360 IMPORTANT AREAS TO ADDRESS 4176 03:22:21,360 --> 03:22:25,520 HEALTH DISPARITY. 4177 03:22:25,520 --> 03:22:27,400 SO NOW I WILL TURN IT BACK 4178 03:22:27,400 --> 03:22:31,240 OVER TO DOCTOR JOHNSON. 4179 03:22:31,240 --> 03:22:34,840 >>NOW AS WE LOOK TO A LOT OF 4180 03:22:34,840 --> 03:22:44,280 WORK GOING ON IN THAT AREA 4181 03:22:44,280 --> 03:22:45,000 SOMETHING A BIT DIFFERENT JUST 4182 03:22:45,000 --> 03:22:45,560 TO START OFF WITH WHAT IS 4183 03:22:45,560 --> 03:22:47,360 HAPPENING IN THE EXTRA NO 4184 03:22:47,360 --> 03:22:49,640 SPACE CAN HAVE GREAT FUNDING 4185 03:22:49,640 --> 03:22:53,240 ANNOUNCEMENTS GREAT RESEARCH 4186 03:22:53,240 --> 03:22:53,880 GOING ON BUT WE HAVE TO THINK 4187 03:22:53,880 --> 03:22:54,400 ABOUT THE ENVIRONMENT THAT 4188 03:22:54,400 --> 03:22:57,480 WORK IS HAPPENING IN THE 4189 03:22:57,480 --> 03:22:58,760 REALLY LOOK AT DIVERSITY 4190 03:22:58,760 --> 03:23:09,080 EQUITY INCLUSION. 4191 03:23:09,520 --> 03:23:12,600 SO IN THE AREAS WE HAVE A 4192 03:23:12,600 --> 03:23:16,720 BEHAVIORAL CODE FOR THOSE FOR 4193 03:23:16,720 --> 03:23:19,760 THE FUNDED GRANTS AND ALSO 4194 03:23:19,760 --> 03:23:20,280 RESEARCH WORKING OFFICE OF 4195 03:23:20,280 --> 03:23:24,040 GENERAL COUNSEL MERELY WORKING 4196 03:23:24,040 --> 03:23:29,120 IN A JACOBS TO PULL THIS 4197 03:23:29,120 --> 03:23:31,280 TOGETHER THAT ACTUALLY THERE 4198 03:23:31,280 --> 03:23:31,920 IS SOMETHING THAT COULD BE 4199 03:23:31,920 --> 03:23:36,320 DONE. 4200 03:23:36,320 --> 03:23:38,920 BUT IN ADDITION TO THE GRANTS 4201 03:23:38,920 --> 03:23:41,440 POLICY STATEMENT THIS MONTH OR 4202 03:23:41,440 --> 03:23:42,320 IN JANUARY TALKING ABOUT THOSE 4203 03:23:42,320 --> 03:23:48,400 INTERNAL CONTROLS AND AS THE 4204 03:23:48,400 --> 03:23:53,040 SERVICES HERE AT THE NIH 4205 03:23:53,040 --> 03:23:53,600 WANTING WERE ALWAYS THINKING 4206 03:23:53,600 --> 03:23:55,840 ABOUT DEALING WITH OUR 4207 03:23:55,840 --> 03:23:59,600 FINANCES. 4208 03:23:59,600 --> 03:24:00,160 BUT WE LOOKED AND SAID THAT 4209 03:24:00,160 --> 03:24:00,760 CODE OF FEDERAL REGULATIONS IS 4210 03:24:00,760 --> 03:24:08,760 SITS ON IS MUCH BROADER. 4211 03:24:08,760 --> 03:24:09,320 SO THE CFR WORD SAY WE COULD 4212 03:24:09,320 --> 03:24:11,480 TELL RECIPIENT ORGANIZATIONS 4213 03:24:11,480 --> 03:24:19,200 TO BE IN COMPLIANCE FOR THOSE 4214 03:24:19,200 --> 03:24:19,800 STANDARDS FOR CONTROL OF THE 4215 03:24:19,800 --> 03:24:23,000 FEDERAL GOVERNMENT THESE 4216 03:24:23,000 --> 03:24:23,880 RECIPIENT ORGANIZATIONS HAVE 4217 03:24:23,880 --> 03:24:27,120 TO HAVE CODES OF CONDUCT AND 4218 03:24:27,120 --> 03:24:33,880 THAT EXPECTATION OF THE 4219 03:24:33,880 --> 03:24:37,200 PERSONNEL SUPPORTED BY NIH 4220 03:24:37,200 --> 03:24:38,520 GRANTS. 4221 03:24:38,520 --> 03:24:39,120 SO NOW THESE CODES OF CONDUCT 4222 03:24:39,120 --> 03:24:43,320 HAVE TO BE ARTICULATED WITH 4223 03:24:43,320 --> 03:24:45,920 THE CONDITIONS OF AWARDS SO 4224 03:24:45,920 --> 03:24:48,800 THESE INCLUDE BUT NOT LIMITED 4225 03:24:48,800 --> 03:24:51,120 TO WORKPLACE FREE OF 4226 03:24:51,120 --> 03:24:55,000 DISCRIMINATORY HARASSMENT AND 4227 03:24:55,000 --> 03:24:59,120 A NOT HOSTILE ENVIRONMENT SO 4228 03:24:59,120 --> 03:24:59,680 THIS IS A GREAT MOVE FORWARD 4229 03:24:59,680 --> 03:25:08,280 AND AS I MENTIONED EARLIER AND 4230 03:25:08,280 --> 03:25:08,880 THAT WE CAN ARTICULATE MORE 4231 03:25:08,880 --> 03:25:09,480 ABOUT THAT, THIS WILL HELP US 4232 03:25:09,480 --> 03:25:13,200 TO MAKE SURE THE ENVIRONMENT 4233 03:25:13,200 --> 03:25:14,240 THAT IT IS CONDUCTED IS IN 4234 03:25:14,240 --> 03:25:18,440 ALIGNMENT WITH THE NIGHT 4235 03:25:18,440 --> 03:25:18,960 PRINCIPLES THAT WE HAVE. 4236 03:25:18,960 --> 03:25:22,960 IN TERMS OF FOCUS AREA NUMBER 4237 03:25:22,960 --> 03:25:23,520 FOUR NOT MENTIONING NUMBER 4238 03:25:23,520 --> 03:25:27,880 THREE THERE IS A LOT GOING ON 4239 03:25:27,880 --> 03:25:28,480 AND WE TOLD YOU EARLIER ABOUT 4240 03:25:28,480 --> 03:25:29,000 WHAT WE ARE PLANNING TO DO 4241 03:25:29,000 --> 03:25:35,240 THAT HERE WE WILL FOCUS ON THE 4242 03:25:35,240 --> 03:25:42,400 INFORMATION THAT WE HAVE SO 4243 03:25:42,400 --> 03:25:43,360 THIS RFI WAS RELEASED SPRING 4244 03:25:43,360 --> 03:25:46,560 OF 2021. 4245 03:25:46,560 --> 03:25:53,800 AND HOW TO ADVANCE RACIAL 4246 03:25:53,800 --> 03:25:55,400 EQUITY AND WITH THE HEALTH 4247 03:25:55,400 --> 03:25:59,480 DISPARITIES AND EQUITIES. 4248 03:25:59,480 --> 03:26:02,960 AND THEN THE MAJORITY ARE FROM 4249 03:26:02,960 --> 03:26:04,080 ACADEMIC INSTITUTIONS. 4250 03:26:04,080 --> 03:26:05,480 AND WITH GENERAL MEMBERS OF 4251 03:26:05,480 --> 03:26:07,200 THE PUBLIC AND FROM HER OWN 4252 03:26:07,200 --> 03:26:13,360 NIH STAFF. 4253 03:26:13,360 --> 03:26:17,080 AND SO AS WE LOOKED AT THIS 4254 03:26:17,080 --> 03:26:22,160 AND GET THE APPROACH WE HAVE 4255 03:26:22,160 --> 03:26:29,600 HERE. 4256 03:26:29,600 --> 03:26:31,680 AND THEN TO ORGANIZE THE 4257 03:26:31,680 --> 03:26:37,920 INFORMATION AND THEN TO 4258 03:26:37,920 --> 03:26:39,200 PRESENT THAT TO LOOK AT THE 4259 03:26:39,200 --> 03:26:39,800 RECOMMENDATIONS THEY ARE 4260 03:26:39,800 --> 03:26:45,840 REPRESENTATIVE AND NOT TO HAVE 4261 03:26:45,840 --> 03:26:50,880 THOSE INTERPRETATIONS BUT THAT 4262 03:26:50,880 --> 03:26:51,360 KEY AREA COMES INTO FIVE 4263 03:26:51,360 --> 03:26:59,400 GENERAL CATEGORIES STUDENT TO 4264 03:26:59,400 --> 03:27:00,840 THE BIOMEDICAL WORKFORCE AND 4265 03:27:00,840 --> 03:27:03,720 EQUITY RESEARCH AND COMMUNITY 4266 03:27:03,720 --> 03:27:09,160 PARTNERSHIPS AND OUTREACH AND 4267 03:27:09,160 --> 03:27:10,280 THE SUGGESTIONS FROM THE 4268 03:27:10,280 --> 03:27:14,920 RESPONDENTS AND SOME OF THESE 4269 03:27:14,920 --> 03:27:18,320 WE HAVE ALREADY PROPOSED AND 4270 03:27:18,320 --> 03:27:19,320 HAVE WORK ON THE WAY TO 4271 03:27:19,320 --> 03:27:24,560 IMPLEMENT IT. 4272 03:27:24,560 --> 03:27:25,200 AND WITH THAT INFORMATION THAT 4273 03:27:25,200 --> 03:27:26,120 IS QUITE HELPFUL BECAUSE ON 4274 03:27:26,120 --> 03:27:26,600 THIS CAME A NUMBER OF 4275 03:27:26,600 --> 03:27:34,400 CROSSCUTTING THEMES AND WITH 4276 03:27:34,400 --> 03:27:35,000 THOSE COST-CUTTING THEMES ARE 4277 03:27:35,000 --> 03:27:38,920 SHOWN HERE TO INCLUDE THE 4278 03:27:38,920 --> 03:27:39,880 EXPANSION AND WITH THE DIA 4279 03:27:39,880 --> 03:27:48,880 INITIATIVES AND EXPANDING THE 4280 03:27:48,880 --> 03:27:50,240 TRAINING AND CAN IMPROVING 4281 03:27:50,240 --> 03:27:50,800 MEDICATION AND OUTREACH AND 4282 03:27:50,800 --> 03:27:51,920 ACKNOWLEDGING STRUCTURAL 4283 03:27:51,920 --> 03:27:55,000 RACISM SO THERE IS A LOT MORE 4284 03:27:55,000 --> 03:28:02,480 DETAIL IN THE RFI REPORT. 4285 03:28:02,480 --> 03:28:06,360 SO NOW WITH THE EXECUTIVE 4286 03:28:06,360 --> 03:28:09,760 SUMMARY AND RODE OUT ACROSS 4287 03:28:09,760 --> 03:28:14,160 MULTIPLE CHANNELS. 4288 03:28:14,160 --> 03:28:23,240 AND THEN WITH THE RESPONDENTS. 4289 03:28:23,240 --> 03:28:27,600 AND THEN COMMITTED TO THIRD 4290 03:28:27,600 --> 03:28:31,200 AND HAS THE WORK WE ARE DOING 4291 03:28:31,200 --> 03:28:36,720 AS PART OF UNITE AND THE NIH. 4292 03:28:36,720 --> 03:28:40,640 AND IT IS A GREAT EFFORT AND 4293 03:28:40,640 --> 03:28:45,240 IT TAKES A LOT OF EFFORT AND 4294 03:28:45,240 --> 03:28:45,800 THEN HAVE SOME CHANGES FROM 4295 03:28:45,800 --> 03:28:51,640 TIME TO TIME SO WE ARE 4296 03:28:51,640 --> 03:28:52,800 EXPANDING THE NIH LEADERSHIP 4297 03:28:52,800 --> 03:28:58,000 FOR UNITE. 4298 03:28:58,000 --> 03:29:08,320 AND AS THE COCHAIR. 4299 03:29:09,680 --> 03:29:14,520 AND THEN WE HAVE SHELLEY WHO 4300 03:29:14,520 --> 03:29:16,760 WILL BE JOINING THE NEW 4301 03:29:16,760 --> 03:29:17,760 COMMITTEE MONICA WHO HAS BEEN 4302 03:29:17,760 --> 03:29:26,240 A COCHAIR OF THE NEW COMMITTEE 4303 03:29:26,240 --> 03:29:26,760 WITH THE NEW RESEARCH OF 4304 03:29:26,760 --> 03:29:27,320 MINORITY HEALTH AND HEALTH 4305 03:29:27,320 --> 03:29:32,720 DISPARITIES RESEARCH. 4306 03:29:32,720 --> 03:29:39,920 AND THEN WITH THE COCHAIRS AND 4307 03:29:39,920 --> 03:29:40,480 THEY ARE ALL EXCITED TO TALK 4308 03:29:40,480 --> 03:29:43,080 ABOUT THAT EFFORT. 4309 03:29:43,080 --> 03:29:52,000 IN ADDITION WITH THE WITH THE 4310 03:29:52,000 --> 03:29:55,680 OFFICE OF EQUITY AND 4311 03:29:55,680 --> 03:29:56,000 INCLUSION. 4312 03:29:56,000 --> 03:29:59,240 WITH THAT INITIATIVE WE ARE 4313 03:29:59,240 --> 03:30:02,160 LEAVING THE OVERALL INITIATIVE 4314 03:30:02,160 --> 03:30:03,400 AND CO- LEADING THE COMMITTEE 4315 03:30:03,400 --> 03:30:10,360 AS WELL. 4316 03:30:10,360 --> 03:30:19,800 AND JOINING THE COMMITTEE AND 4317 03:30:19,800 --> 03:30:20,960 ANOTHER GREAT ADDITION TO THE 4318 03:30:20,960 --> 03:30:21,560 KEY COMMITTEE THERE ARE THOSE 4319 03:30:21,560 --> 03:30:24,080 WHO ARE ROTATING OFF AS 4320 03:30:24,080 --> 03:30:28,000 CERTAIN TO HELP US TO BE 4321 03:30:28,000 --> 03:30:32,200 SUCCESSFUL. 4322 03:30:32,200 --> 03:30:33,280 AND ALL THE MEMBERS OF THE 4323 03:30:33,280 --> 03:30:33,840 NIGHT COMMITTEE AND THE WORK 4324 03:30:33,840 --> 03:30:41,240 THAT'S GOING ON. 4325 03:30:41,240 --> 03:30:41,880 AS HE GO FORWARD TO FOCUS THE 4326 03:30:41,880 --> 03:30:42,400 AREAS SITTING ON THOSE AS 4327 03:30:42,400 --> 03:30:43,000 NEEDED AND I THINK IN TERMS OF 4328 03:30:43,000 --> 03:30:44,920 OUR REPORTING WE WILL SHIFT 4329 03:30:44,920 --> 03:30:55,520 THAT TO AN ANNUAL UPDATE. 4330 03:30:55,520 --> 03:30:57,200 AND THEN THE BIOMEDICAL 4331 03:30:57,200 --> 03:31:01,360 RESEARCH INSTITUTE AND THE 4332 03:31:01,360 --> 03:31:03,800 PRICE THAT YOU WANT TO BE AND 4333 03:31:03,800 --> 03:31:04,960 THEN YOU ARE CERTAIN YOU CAN 4334 03:31:04,960 --> 03:31:05,400 SUCCEED AND THRIVE. 4335 03:31:05,400 --> 03:31:11,600 SO WITH THAT WE WILL TURN IT 4336 03:31:11,600 --> 03:31:12,200 OVER TO QUESTION AND COMMENTS 4337 03:31:12,200 --> 03:31:14,400 RELATED TO THE NIGHT UPDATE. 4338 03:31:14,400 --> 03:31:23,480 >>THERE'S A GROUP OF PEOPLE 4339 03:31:23,480 --> 03:31:27,600 THAT VOLUNTEER THEIR TIME 4340 03:31:27,600 --> 03:31:30,040 SERVING AS MEMBERS OF THE FIVE 4341 03:31:30,040 --> 03:31:36,640 COMMITTEES THIS IS A MORE 4342 03:31:36,640 --> 03:31:37,240 RECENT SUCCESS WE HAVE HAD AS 4343 03:31:37,240 --> 03:31:47,680 PART OF THE INITIATIVE IS 4344 03:32:00,840 --> 03:32:05,880 TRULY TRANSFORMATIVE I CANNOT 4345 03:32:05,880 --> 03:32:07,480 SAY ENOUGH POSITIVE ATTRIBUTES 4346 03:32:07,480 --> 03:32:17,840 FOR THIS TEAM AND THE 4347 03:32:19,280 --> 03:32:19,840 SCIENTIFIC APPROACH AS WELL AS 4348 03:32:19,840 --> 03:32:21,720 A COLLEGIAL APPROACH. 4349 03:32:21,720 --> 03:32:32,160 AND THE STRUCTURES OF RACISM 4350 03:32:32,160 --> 03:32:35,200 SO THAT IS A BROADER 4351 03:32:35,200 --> 03:32:39,760 CHALLENGE. 4352 03:32:39,760 --> 03:32:41,000 WANT TO EXPRESS MY ADMIRATION 4353 03:32:41,000 --> 03:32:44,560 WITH DOCTOR BARNES AND JOHNSON 4354 03:32:44,560 --> 03:32:47,640 FOR ALL OF THEIR WORK IN THIS 4355 03:32:47,640 --> 03:32:52,920 REGARD. 4356 03:32:52,920 --> 03:32:53,480 AS I HAVE SAID ON MULTIPLE 4357 03:32:53,480 --> 03:32:56,040 OCCASIONS I THINK THE UNITE 4358 03:32:56,040 --> 03:32:59,400 APPROACH THEY HAVE EXECUTED IN 4359 03:32:59,400 --> 03:33:04,720 THE UNITED INITIATIVE IS A 4360 03:33:04,720 --> 03:33:08,880 BLUEPRINT FOR STRUCTURAL AND 4361 03:33:08,880 --> 03:33:09,440 ORGANIZATIONAL INFORMATION. 4362 03:33:09,440 --> 03:33:11,640 I HAVE NEVER SEEN ANYONE 4363 03:33:11,640 --> 03:33:14,720 INVOLVED IN THESE KINDS OF 4364 03:33:14,720 --> 03:33:17,400 ISSUES BEFORE IT HAS NEVER 4365 03:33:17,400 --> 03:33:22,200 BEEN WELL CONCEIVED OR 4366 03:33:22,200 --> 03:33:24,200 EXECUTED EXECUTED SCIENCE 4367 03:33:24,200 --> 03:33:31,080 -BASED APPROACH AND I HAVE 4368 03:33:31,080 --> 03:33:31,960 TOLD MARIE I HAVE TO SEEING 4369 03:33:31,960 --> 03:33:36,280 THE PRAISES SO ONE THING I 4370 03:33:36,280 --> 03:33:41,960 WOULD ASK IS AROUND THE DATA 4371 03:33:41,960 --> 03:33:52,440 COLLECTION COMPONENT OBVIOUSLY 4372 03:33:52,440 --> 03:33:54,360 THOSE METRICS THAT MONICA HAS 4373 03:33:54,360 --> 03:34:00,280 DESCRIBED, IT IS IMPORTANT FOR 4374 03:34:00,280 --> 03:34:04,800 THOSE ORGANIZATIONS TO LEARN. 4375 03:34:04,800 --> 03:34:06,840 UNIVERSITIES AND BUSINESSES TO 4376 03:34:06,840 --> 03:34:11,720 TALK ABOUT RUSSIA DATA 4377 03:34:11,720 --> 03:34:16,560 COLLECTION. 4378 03:34:16,560 --> 03:34:17,920 WITH THE ULTIMATE CORRECTION 4379 03:34:17,920 --> 03:34:19,600 WITHOUT WE WOULD GO DOWN THIS 4380 03:34:19,600 --> 03:34:22,920 ROAD BUT WHAT IS THE 4381 03:34:22,920 --> 03:34:23,360 COLLECTIVE MEASURE? 4382 03:34:23,360 --> 03:34:26,960 SO IN THAT REGARD OVER THE 4383 03:34:26,960 --> 03:34:27,840 PAST TWO YEARS WHAT ARE THE 4384 03:34:27,840 --> 03:34:34,440 LESSONS LEARNED THAT GOES TO 4385 03:34:34,440 --> 03:34:36,360 DOCTOR JOHNSON AND DOCTOR 4386 03:34:36,360 --> 03:34:38,080 BERNARD? 4387 03:34:38,080 --> 03:34:44,280 >>THERE IS A LOT OF US. 4388 03:34:44,280 --> 03:34:45,200 AS THOSE UNITE MEMBERS HAVE 4389 03:34:45,200 --> 03:34:47,960 JOINED IN. 4390 03:34:47,960 --> 03:34:50,960 MONICA DO YOU WANT TO TALK 4391 03:34:50,960 --> 03:34:55,200 ABOUT DATA COLLECTION? 4392 03:34:55,200 --> 03:34:55,720 >>I CAN SPEAK FROM THE 4393 03:34:55,720 --> 03:34:59,080 PERSPECTIVE OF A COMMITTEE 4394 03:34:59,080 --> 03:35:02,360 COCHAIR THAT REALLY FOCUSES ON 4395 03:35:02,360 --> 03:35:08,520 PERSPECTIVE DATA COLLECTION IN 4396 03:35:08,520 --> 03:35:09,400 LISTENING SESSIONS IN THE 4397 03:35:09,400 --> 03:35:10,000 EXTRAMURAL COMMUNITY AND THAT 4398 03:35:10,000 --> 03:35:13,120 WAS A SIGNIFICANT EFFORT TO 4399 03:35:13,120 --> 03:35:17,240 REQUIRE A LOT OF PARTNERSHIPS 4400 03:35:17,240 --> 03:35:19,560 TO CONVENE GROUPS TO MAKE THEM 4401 03:35:19,560 --> 03:35:24,920 AWARE OF THE OPPORTUNITY TO 4402 03:35:24,920 --> 03:35:25,480 SHARE THEIR VOICE AND THEIR 4403 03:35:25,480 --> 03:35:25,760 PERSPECTIVE. 4404 03:35:25,760 --> 03:35:26,320 IT'S IMPORTANT WE CREATED 4405 03:35:26,320 --> 03:35:36,800 OPPORTUNITIES THAT WERE SAFE 4406 03:35:40,200 --> 03:35:41,480 WE ALSO DEVELOPED A PLAN TO 4407 03:35:41,480 --> 03:35:43,160 ANALYZE AND TO MAKE SURE THEY 4408 03:35:43,160 --> 03:35:49,840 ARE SO WHAT WE HEARD IT WAS 4409 03:35:49,840 --> 03:35:53,120 NOT SURPRISING THAT WE SHARED 4410 03:35:53,120 --> 03:35:55,400 SOME VULNERABLE EXPERIENCES 4411 03:35:55,400 --> 03:35:58,960 DIRECTLY OR VICARIOUSLY. 4412 03:35:58,960 --> 03:35:59,520 AND THEN IT IS IMPORTANT TO 4413 03:35:59,520 --> 03:36:00,080 RETURN THOSE RESULTS TO OUR 4414 03:36:00,080 --> 03:36:03,000 COMMUNITY PARTNERS IN TERMS OF 4415 03:36:03,000 --> 03:36:03,640 THE EXTERNAL LISTENING 4416 03:36:03,640 --> 03:36:08,960 SESSIONS HOSTING SUMMARIES AND 4417 03:36:08,960 --> 03:36:16,600 THINK OUR PARTICIPANTS FOR 4418 03:36:16,600 --> 03:36:17,160 LENDING THEIR VOICE AND TIME 4419 03:36:17,160 --> 03:36:17,760 TO CONTRIBUTE IN THE WAY THEY 4420 03:36:17,760 --> 03:36:18,360 COULD TO UNITE AND TO DEVELOP 4421 03:36:18,360 --> 03:36:18,920 A SERIES OF POTENTIALLY 4422 03:36:18,920 --> 03:36:28,040 ACTIONABLE RECOMMENDATIONS 4423 03:36:28,040 --> 03:36:28,640 THAT HAS BEEN PRESENTED IN THE 4424 03:36:28,640 --> 03:36:29,240 RFI AND THE EXTERNAL LISTENING 4425 03:36:29,240 --> 03:36:33,200 SESSIONS BEING CONSIDERED AND 4426 03:36:33,200 --> 03:36:35,800 MANY ARE UNDERWAY TO 1 DEGREE 4427 03:36:35,800 --> 03:36:40,680 OR ANOTHER. 4428 03:36:40,680 --> 03:36:42,080 >>AND HAVING IT TO BE A 4429 03:36:42,080 --> 03:36:43,240 COCHAIR OF A COMMITTEE WITH 4430 03:36:43,240 --> 03:36:50,120 DOCTOR ARCHER FOR A WHILE WE 4431 03:36:50,120 --> 03:36:51,480 FOUND IN REGARDS TO INTERNAL 4432 03:36:51,480 --> 03:36:54,360 DATA THE WAY WE DESCRIBE 4433 03:36:54,360 --> 03:36:58,240 POSITIONS VARIES FROM PLACE TO 4434 03:36:58,240 --> 03:36:59,600 PAY ITS AND IT MAKES IT 4435 03:36:59,600 --> 03:37:01,480 DIFFICULT TO DO THOSE DIRECT 4436 03:37:01,480 --> 03:37:05,080 COMPARISONS SO IF YOU LOOK AT 4437 03:37:05,080 --> 03:37:05,680 THE PROGRESS REPORT THERE'S A 4438 03:37:05,680 --> 03:37:06,160 LOT THAT HAS BEEN DONE 4439 03:37:06,160 --> 03:37:09,200 INTERNALLY BUT THOSE THAT ARE 4440 03:37:09,200 --> 03:37:10,320 STILL UNDER DEVELOPMENT AND 4441 03:37:10,320 --> 03:37:13,400 NOT READY FOR PRESENTATION 4442 03:37:13,400 --> 03:37:16,200 WITH THIS PARTICULAR ACD 4443 03:37:16,200 --> 03:37:21,840 MEETING. 4444 03:37:21,840 --> 03:37:23,440 LOOK AT RACE OR ETHNICITY OR 4445 03:37:23,440 --> 03:37:28,960 GRADE LEVEL. 4446 03:37:28,960 --> 03:37:29,520 SO THERE ARE SOME APPARENT 4447 03:37:29,520 --> 03:37:30,040 INEQUITIES THAT LED TO THE 4448 03:37:30,040 --> 03:37:34,800 DEVELOPMENT OF THE LOWER 4449 03:37:34,800 --> 03:37:35,360 TRAINING PROGRAM THAT WAS 4450 03:37:35,360 --> 03:37:35,600 MENTIONED. 4451 03:37:35,600 --> 03:37:41,400 WE ARE REORGANIZING THE WAY WE 4452 03:37:41,400 --> 03:37:42,520 GIVE DIRECTORS AWARDS BECAUSE 4453 03:37:42,520 --> 03:37:43,120 WE HAVE ALL OF THESE CREATIVE 4454 03:37:43,120 --> 03:37:48,480 PEOPLE AROUND THE TABLE WHO 4455 03:37:48,480 --> 03:37:49,000 ARE ASKING QUESTIONS AND 4456 03:37:49,000 --> 03:37:49,480 LOOKING AT THE DATA AND 4457 03:37:49,480 --> 03:37:50,080 HELPING TO THINK IT THROUGH. 4458 03:37:50,080 --> 03:38:00,560 >>AND TO THINK THAT WAS SO 4459 03:38:03,160 --> 03:38:03,720 SIMPLE WHY DID WE THINK ABOUT 4460 03:38:03,720 --> 03:38:06,000 THIS BEFORE? 4461 03:38:06,000 --> 03:38:07,520 AND THEN FROM DIFFERENT 4462 03:38:07,520 --> 03:38:10,800 BACKGROUNDS TO APPLY FOR 4463 03:38:10,800 --> 03:38:11,440 OPPOSITIONS WHY ARE WE SENDING 4464 03:38:11,440 --> 03:38:16,920 THIS OUT TO GROUPS THAT ARE 4465 03:38:16,920 --> 03:38:17,320 SUPPOSED OF THOSE 4466 03:38:17,320 --> 03:38:17,840 UNDERREPRESENTED GROUPS SO 4467 03:38:17,840 --> 03:38:18,400 WORKING WITH THE OFFICE OF 4468 03:38:18,400 --> 03:38:22,000 HUMAN RESOURCES TO DEVELOP A 4469 03:38:22,000 --> 03:38:23,000 LISTSERV OF THE ANNOUNCEMENTS 4470 03:38:23,000 --> 03:38:26,960 OF THE OPPORTUNITIES SO THAT 4471 03:38:26,960 --> 03:38:37,480 WE CAN SEE AND GATHER DATA AND 4472 03:38:38,440 --> 03:38:38,920 SO DATA IS FASCINATING AND 4473 03:38:38,920 --> 03:38:44,200 IT'S A CHALLENGE SOME WE HAVE 4474 03:38:44,200 --> 03:38:44,760 TO RELY ON SYSTEMS FROM THE 4475 03:38:44,760 --> 03:38:45,360 DEPARTMENT THAT IS NOT PARSED 4476 03:38:45,360 --> 03:38:48,720 IN A WAY SO WE HAVE TO WORK 4477 03:38:48,720 --> 03:38:55,440 WITH THEM SO IT CONTINUES TO 4478 03:38:55,440 --> 03:38:57,960 BE A CHALLENGE BUT WE HAVE 4479 03:38:57,960 --> 03:39:03,400 ALREADY HAVE GONE SO MUCH IN 4480 03:39:03,400 --> 03:39:04,000 NEED TO FIGURE OUT A WAY WITH 4481 03:39:04,000 --> 03:39:11,360 THE LESSONS LEARNED FROM THE 4482 03:39:11,360 --> 03:39:12,520 AND WITH SOME OF THESE WE HAVE 4483 03:39:12,520 --> 03:39:13,520 ALREADY GONE OVER. 4484 03:39:13,520 --> 03:39:19,320 >>ONE LESSON LEARNED AS 4485 03:39:19,320 --> 03:39:21,880 MONICA WAS TALKING TAKE ME 4486 03:39:21,880 --> 03:39:24,920 BACK TO THOSE LISTENING 4487 03:39:24,920 --> 03:39:33,640 SESSIONS AND WHERE WE STARTED 4488 03:39:33,640 --> 03:39:36,280 YOU LEARNED A TREMENDOUS 4489 03:39:36,280 --> 03:39:42,680 AMOUNT WE DID THE LISTENING 4490 03:39:42,680 --> 03:39:44,520 SESSIONS ON OURSELVES. 4491 03:39:44,520 --> 03:39:45,360 WE STARTED WITH THE YOUTH 4492 03:39:45,360 --> 03:39:45,920 COMMITTEE GROUP AND BRINGING 4493 03:39:45,920 --> 03:39:52,440 IT TO A FULL UNITE GROUP AND 4494 03:39:52,440 --> 03:39:52,960 THE ANTIRACISM STEERING 4495 03:39:52,960 --> 03:39:53,480 COMMITTEE AND WHO HAS COME 4496 03:39:53,480 --> 03:39:55,320 TOGETHER TO SAY THIS IS 4497 03:39:55,320 --> 03:40:05,840 IMPORTANT TO ME AND HAVE THEM 4498 03:40:06,800 --> 03:40:07,240 GO THROUGH THE PROCESS. 4499 03:40:07,240 --> 03:40:07,680 THESE PEOPLE HAVE BEEN 4500 03:40:07,680 --> 03:40:08,280 EMPOWERED TO BE ON A COMMITTEE 4501 03:40:08,280 --> 03:40:08,760 OR RAISE THEIR HAND TO 4502 03:40:08,760 --> 03:40:10,440 VOLUNTEER TO PARTICIPATE IN 4503 03:40:10,440 --> 03:40:11,680 WHAT WE LEARNED THERE ARE 4504 03:40:11,680 --> 03:40:16,640 STILL THINGS WE HAVE TO LEARN 4505 03:40:16,640 --> 03:40:17,160 TO STRUCTURE THE LISTENING 4506 03:40:17,160 --> 03:40:17,760 SESSIONS IN A WAY PEOPLE WERE 4507 03:40:17,760 --> 03:40:20,960 COMFORTABLE TO BE SURE THAT 4508 03:40:20,960 --> 03:40:26,800 THERE IS NO RETRIBUTION TO 4509 03:40:26,800 --> 03:40:27,400 TALK ABOUT THEIR EXPERIENCES 4510 03:40:27,400 --> 03:40:28,000 AND WHAT THEY FELT THEY WANTED 4511 03:40:28,000 --> 03:40:38,160 TO SHARE. 4512 03:40:42,720 --> 03:40:43,560 I JUST WANT TO SAY HOW 4513 03:40:43,560 --> 03:40:54,120 IMPRESSIVE IT HAS BEEN ON —- 4514 03:40:54,560 --> 03:40:55,040 TO WATCH THE DEVELOPMENT OF 4515 03:40:55,040 --> 03:40:55,560 THE UNITE PROJECT AND HOW 4516 03:40:55,560 --> 03:40:56,640 BEAUTIFULLY IT HAS BEEN PUT 4517 03:40:56,640 --> 03:41:01,560 TOGETHER HOW LOGICALLY AND HOW 4518 03:41:01,560 --> 03:41:03,800 POWERFULLY. 4519 03:41:03,800 --> 03:41:08,240 BUT WHAT I END UP THINKING IS 4520 03:41:08,240 --> 03:41:09,400 IT IS ALWAYS TRUE YOU HAVE 4521 03:41:09,400 --> 03:41:12,400 BEEN EMPOWERED TO START THE 4522 03:41:12,400 --> 03:41:15,240 EFFORT AND YOU HAVE DONE A 4523 03:41:15,240 --> 03:41:18,680 FANTASTIC JOB. 4524 03:41:18,680 --> 03:41:21,560 SO HOW DO YOU SUSTAIN THIS? 4525 03:41:21,560 --> 03:41:29,120 THE PROBLEM IS SO HUGE AND SO 4526 03:41:29,120 --> 03:41:33,520 BROAD AND DEEP END I LOVE 4527 03:41:33,520 --> 03:41:34,080 SEEING YOU BRINGING YOUNGER 4528 03:41:34,080 --> 03:41:37,280 PEOPLE IT AND THAT IS HUGELY 4529 03:41:37,280 --> 03:41:40,400 IMPORTANT A LOT OF PEOPLE 4530 03:41:40,400 --> 03:41:42,120 HAVEN'T EXPERIENCED THIS 4531 03:41:42,120 --> 03:41:42,640 BRINGING TOGETHER YOU HAVE 4532 03:41:42,640 --> 03:41:50,400 DONE THE LAST TWO YEARS AND 4533 03:41:50,400 --> 03:41:58,000 THEN BUT OVER DECADES AND THEN 4534 03:41:58,000 --> 03:42:00,520 I APPLAUD YOU FOR GETTING IT 4535 03:42:00,520 --> 03:42:06,440 STARTED AND I REALLY LOVE I'M 4536 03:42:06,440 --> 03:42:06,920 GOING TO START CRYING. 4537 03:42:06,920 --> 03:42:07,200 [LAUGHTER] 4538 03:42:07,200 --> 03:42:09,920 BUT I LOVE TO SEE THIS AS AN 4539 03:42:09,920 --> 03:42:17,480 INTEGRAL MEMBER OF THE GROUP. 4540 03:42:17,480 --> 03:42:18,040 >>I HAVE BEEN AT NIH MORE 4541 03:42:18,040 --> 03:42:18,640 THAN 35 YEARS AND THIS IS BEEN 4542 03:42:18,640 --> 03:42:22,200 ONE OF THE MOST IMPRESSIVE 4543 03:42:22,200 --> 03:42:22,840 UNDERTAKINGS I HAVE EVER BEEN 4544 03:42:22,840 --> 03:42:28,840 A PART OF EVEN THOUGH AS A 4545 03:42:28,840 --> 03:42:31,320 MARATHON IT IS A RELAY SO WHAT 4546 03:42:31,320 --> 03:42:37,000 YOU JUST SAW WE HIGHLIGHTED 4547 03:42:37,000 --> 03:42:38,360 THE LEADERSHIP CHANGES. 4548 03:42:38,360 --> 03:42:45,000 WE DID A SO WE GOT AN 4549 03:42:45,000 --> 03:42:47,320 UNDERSTANDING OF HOW LONG THEY 4550 03:42:47,320 --> 03:42:50,120 WOULD LIKE TO BE SO WE DO HAVE 4551 03:42:50,120 --> 03:42:52,280 A PRETTY GOOD BENCH THAT WE 4552 03:42:52,280 --> 03:42:55,280 CAN PULL ON. 4553 03:42:55,280 --> 03:42:56,240 AND THOSE THAT ARE READY TO 4554 03:42:56,240 --> 03:42:58,280 JUMP ON BOARD. 4555 03:42:58,280 --> 03:43:03,120 >>AND A LOT OF VOLUNTEERS. 4556 03:43:03,120 --> 03:43:03,720 >>THERE ARE MEMBERS WHO WANT 4557 03:43:03,720 --> 03:43:07,280 TO JOIN DIRECTLY INTO UNITE SO 4558 03:43:07,280 --> 03:43:17,840 THIS IS ALL HAPPENING. 4559 03:43:17,840 --> 03:43:18,400 SO WE CONTINUE TO RUN THE RACE 4560 03:43:18,400 --> 03:43:18,880 WE HAVE A ORIENTATION IN 4561 03:43:18,880 --> 03:43:19,480 JANUARY FOR THE MEMBERS AS WE 4562 03:43:19,480 --> 03:43:25,720 GET THIS FORWARD SO IT HAS 4563 03:43:25,720 --> 03:43:27,000 BEEN AMAZING I SEE THAT 4564 03:43:27,000 --> 03:43:28,640 CONTINUING TO GO ON FOR A 4565 03:43:28,640 --> 03:43:30,680 WHILE THERE ARE SOME HICCUPS 4566 03:43:30,680 --> 03:43:32,280 ALONG THE WAY BUT WE HAVE 4567 03:43:32,280 --> 03:43:35,160 CERTAIN SET UP TO OVERCOME 4568 03:43:35,160 --> 03:43:37,440 THOSE. 4569 03:43:37,440 --> 03:43:42,520 >>YOU BRIEFLY MENTIONED THIS 4570 03:43:42,520 --> 03:43:43,560 IT WAS HALF A SECOND IN YOUR 4571 03:43:43,560 --> 03:43:44,840 SLIDE BUT MAYBE IT'S WORTH 4572 03:43:44,840 --> 03:43:45,840 EXPANDING. 4573 03:43:45,840 --> 03:43:49,600 TALK ABOUT INTEGRATING DATA 4574 03:43:49,600 --> 03:43:53,240 INTO THE STRUCTURE TO ADJUST 4575 03:43:53,240 --> 03:43:54,600 WHAT YOU ARE JUST MENTIONING. 4576 03:43:54,600 --> 03:44:00,000 >>SO WHEN UNITE STARTED OUT 4577 03:44:00,000 --> 03:44:01,120 THERE WAS THE INITIATIVE WITH 4578 03:44:01,120 --> 03:44:06,680 A LOT OF SUPPORT FORMALLY INTO 4579 03:44:06,680 --> 03:44:07,200 THE NIH GOVERNMENTS WE ARE 4580 03:44:07,200 --> 03:44:14,200 WORKING GROUP REPORTING TO THE 4581 03:44:14,200 --> 03:44:14,800 NIH DIRECTOR SO WE ARE KEEPING 4582 03:44:14,800 --> 03:44:16,320 IT ADD LEVEL NOW SO WE DON'T 4583 03:44:16,320 --> 03:44:20,360 LOSE OR HAVE INDIVIDUALS WITH 4584 03:44:20,360 --> 03:44:26,640 LESS INTEREST NOW THEY SEE IT 4585 03:44:26,640 --> 03:44:31,400 AS VISIBLE WITH ALL THE WORK 4586 03:44:31,400 --> 03:44:32,880 GOING ON SO PEOPLE SEE THAT SO 4587 03:44:32,880 --> 03:44:33,720 WHEN THEY CONTINUE TO 4588 03:44:33,720 --> 03:44:35,160 INTEGRATE INTO THE NORMAL 4589 03:44:35,160 --> 03:44:38,360 FABRIC IT IS A PART OF THE 4590 03:44:38,360 --> 03:44:42,720 INSTITUTION AND WE HOPE IT'S 4591 03:44:42,720 --> 03:44:43,680 NOT A WAY YOU CAN'T FOR A VERY 4592 03:44:43,680 --> 03:44:53,840 LONG TIME. 4593 03:44:56,840 --> 03:44:57,360 >>I JUST WANT TO SAY THANK 4594 03:44:57,360 --> 03:44:57,520 YOU. 4595 03:44:57,520 --> 03:44:58,000 WE ALL HAD OUR BLINDERS 4596 03:44:58,000 --> 03:45:06,320 REMOVED IN 2020 AND THANK YOU 4597 03:45:06,320 --> 03:45:10,080 ALL FOR YOUR LEADERSHIP BUT 4598 03:45:10,080 --> 03:45:13,080 THANK YOU SO MUCH FOR CREATING 4599 03:45:13,080 --> 03:45:18,440 SPACE SO THAT PEOPLE COULD 4600 03:45:18,440 --> 03:45:18,960 FOCUS ON MOVING THIS ISSUE 4601 03:45:18,960 --> 03:45:19,200 FORWARD. 4602 03:45:19,200 --> 03:45:25,360 THERE ARE PLENTY OF POINTS IN 4603 03:45:25,360 --> 03:45:25,920 2020 I DID NOT HAVE A LOT OF 4604 03:45:25,920 --> 03:45:26,480 HOPE THERE WOULD BE MASSIVE 4605 03:45:26,480 --> 03:45:27,040 TRANSFORMATION IN THE SYSTEM 4606 03:45:27,040 --> 03:45:28,360 IN THE ROLE YOU HAVE PLAYED 4607 03:45:28,360 --> 03:45:30,960 HAS MEANT A GREAT DEAL. 4608 03:45:30,960 --> 03:45:31,560 THANK YOU TO THE COMMITTEE AND 4609 03:45:31,560 --> 03:45:37,040 ALL THE PEOPLE WHO ARE DOING 4610 03:45:37,040 --> 03:45:37,640 TREMENDOUSLY DIFFICULT WORK TO 4611 03:45:37,640 --> 03:45:38,240 BRING ABOUT THIS CHANGE THESE 4612 03:45:38,240 --> 03:45:38,800 ARE AT THE HEART OF THE WORK 4613 03:45:38,800 --> 03:45:42,880 OF WHAT WE DO REMOVING 4614 03:45:42,880 --> 03:45:46,440 BARRIERS AND EQUALLY AS 4615 03:45:46,440 --> 03:45:47,000 IMPORTANT TO MAKE SURE THAT 4616 03:45:47,000 --> 03:45:49,160 SCIENCE BENEFITS EVERYBODY YOU 4617 03:45:49,160 --> 03:45:52,040 SHOULD BE REALLY PROUD OF THE 4618 03:45:52,040 --> 03:45:53,920 WORK SPENDING SOME TIME TO 4619 03:45:53,920 --> 03:45:56,840 BRING ABOUT SYSTEMS 4620 03:45:56,840 --> 03:46:00,880 TRANSFORMATION TO SUPPORT 4621 03:46:00,880 --> 03:46:04,680 SCIENTIST WITH JUDITH ON THE 4622 03:46:04,680 --> 03:46:13,200 COMMITTEE BUT ALSO TO THINK 4623 03:46:13,200 --> 03:46:13,720 ABOUT HOW TO SUPPORT YOUNG 4624 03:46:13,720 --> 03:46:14,280 POSTDOC AND AS SOME OF THOSE 4625 03:46:14,280 --> 03:46:14,800 EFFORTS I HAVE NOT BEEN 4626 03:46:14,800 --> 03:46:20,120 INCREDIBLY SUCCESSFUL TO BRING 4627 03:46:20,120 --> 03:46:20,680 ABOUT CULTURE AND SYSTEMS 4628 03:46:20,680 --> 03:46:20,920 CHANGE. 4629 03:46:20,920 --> 03:46:21,520 WHAT ARE THE BEST PRACTICES WE 4630 03:46:21,520 --> 03:46:22,920 SHOULD BE LEARNING? 4631 03:46:22,920 --> 03:46:24,800 YOU SIMPLY SIMPLY HAVEN'T 4632 03:46:24,800 --> 03:46:28,520 TRANSFORMED NIH BED BIOMEDICAL 4633 03:46:28,520 --> 03:46:31,480 ENTERPRISE BUT WITH A HANDBOOK 4634 03:46:31,480 --> 03:46:38,960 OR A TRAINING SESSION, WHAT 4635 03:46:38,960 --> 03:46:39,440 WORD YOU TELL US HOW TO 4636 03:46:39,440 --> 03:46:40,520 APPROACH IT? 4637 03:46:40,520 --> 03:46:41,120 WHO SHOULD BE BRING IN OR WHO 4638 03:46:41,120 --> 03:46:50,880 TO ADVANCE THESE ISSUES? 4639 03:46:50,880 --> 03:46:51,480 >>AND TO HAVE THE LEADERSHIP 4640 03:46:51,480 --> 03:46:51,920 AT THE TOP FOR SURE. 4641 03:46:51,920 --> 03:46:53,040 BUT ONE OF THE MOST IMPORTANT 4642 03:46:53,040 --> 03:46:57,200 COMPONENTS IS THAT USUALLY 4643 03:46:57,200 --> 03:46:59,360 WHEN WE SET UP IN INITIATIVE 4644 03:46:59,360 --> 03:47:09,840 ALL THOSE HIGH-LEVEL PEOPLE 4645 03:47:10,480 --> 03:47:11,000 AND THEN DECIDING TO LOSE 4646 03:47:11,000 --> 03:47:15,160 PEOPLE FROM ALL LEVELS TO GIVE 4647 03:47:15,160 --> 03:47:17,000 A LOT OF DIFFERENT 4648 03:47:17,000 --> 03:47:23,360 PERSPECTIVES SO THEN VERY 4649 03:47:23,360 --> 03:47:23,960 QUICKLY THEY REMIND US WE HAVE 4650 03:47:23,960 --> 03:47:26,400 NOT BEEN MUCH AT ALL AND THOSE 4651 03:47:26,400 --> 03:47:27,200 INDIVIDUALS WHO BROUGHT THAT 4652 03:47:27,200 --> 03:47:29,600 TO THE TABLE LISTENING FROM 4653 03:47:29,600 --> 03:47:35,200 THESE COMMITTEES THINKING WE 4654 03:47:35,200 --> 03:47:40,040 HAVE NOT THOUGHT OF THAT. 4655 03:47:40,040 --> 03:47:43,040 I HAVE A LOT OF HIGHFALUTIN 4656 03:47:43,040 --> 03:47:46,200 FOLKS WITH STUFF BEHIND THEIR 4657 03:47:46,200 --> 03:47:47,200 NAME BUT THEY DON'T HAVE 4658 03:47:47,200 --> 03:47:51,200 NEARLY AS MUCH THAT LIVE THE 4659 03:47:51,200 --> 03:47:53,480 DAY TODAY WITH THAT 4660 03:47:53,480 --> 03:47:54,320 PERSPECTIVE. 4661 03:47:54,320 --> 03:47:57,880 PUT THAT TOGETHER WITH 4662 03:47:57,880 --> 03:48:03,160 LEADERSHIP NOT ONLY WILLING TO 4663 03:48:03,160 --> 03:48:08,240 INVEST TIME THAT TALENT AND 4664 03:48:08,240 --> 03:48:08,800 FUNDING TO MAKE THAT HAPPEN 4665 03:48:08,800 --> 03:48:09,400 THAT'S WHEN YOU GET SOMETHING 4666 03:48:09,400 --> 03:48:10,000 DONE TO MAKE THE CHANGE WE ARE 4667 03:48:10,000 --> 03:48:17,960 TALKING ABOUT. 4668 03:48:17,960 --> 03:48:18,560 >>IF I CAN ADD TO THAT TO THE 4669 03:48:18,560 --> 03:48:19,200 CREDIT OF OUR LEADERSHIP NOT 4670 03:48:19,200 --> 03:48:19,760 ONLY ESPOUSED VALUES THAT 4671 03:48:19,760 --> 03:48:21,960 PEOPLE ARE HELD ACCOUNTABLE. 4672 03:48:21,960 --> 03:48:31,200 YOU HAVE TO HAVE THAT SO TO 4673 03:48:31,200 --> 03:48:31,800 HAVE THAT DEA A EXPECTATION OF 4674 03:48:31,800 --> 03:48:38,920 THE EXECUTIVE PERFORMANCE PLAN 4675 03:48:38,920 --> 03:48:39,560 AND THAT CASCADES DOWN EVERY 4676 03:48:39,560 --> 03:48:40,160 SINGLE STAFF MEMBER HAS THIS 4677 03:48:40,160 --> 03:48:44,520 AS WELL SO TO BE HELD 4678 03:48:44,520 --> 03:48:45,120 ACCOUNTABLE FOR THE BOTTOM-UP 4679 03:48:45,120 --> 03:48:51,400 OR THE TOP-DOWN NOT ONE THING 4680 03:48:51,400 --> 03:48:52,400 THAT ALL OF THE THINGS. 4681 03:48:52,400 --> 03:48:57,240 >>IN ADDITION TO THOSE POINTS 4682 03:48:57,240 --> 03:49:03,640 A READY-MADE, YOU NEED TO 4683 03:49:03,640 --> 03:49:07,720 OFFER FORMAL TRAINING TO NOT 4684 03:49:07,720 --> 03:49:12,640 ONLY READERSHIP BUT 4685 03:49:12,640 --> 03:49:19,000 PARTICULARLY BUT I HAVE TO SAY 4686 03:49:19,000 --> 03:49:23,880 THAT WE ARE NOT BORING YOU 4687 03:49:23,880 --> 03:49:24,360 WITH OUR OWN PERSONAL 4688 03:49:24,360 --> 03:49:24,600 STORIES. 4689 03:49:24,600 --> 03:49:26,280 I THOUGHT I UNDERSTOOD ALL OF 4690 03:49:26,280 --> 03:49:26,480 THIS. 4691 03:49:26,480 --> 03:49:29,120 I REALLY DID. 4692 03:49:29,120 --> 03:49:32,200 AND NOT UNTIL I WENT THROUGH 4693 03:49:32,200 --> 03:49:36,920 FORMAL TRAINING THAT I 4694 03:49:36,920 --> 03:49:43,320 REALIZED I HAVE THIS ALL 4695 03:49:43,320 --> 03:49:50,760 WRONG. 4696 03:49:50,760 --> 03:49:51,280 IT WAS A VERY COMPLICATED 4697 03:49:51,280 --> 03:49:51,880 MOMENT FOR ME BECAUSE I WAS SO 4698 03:49:51,880 --> 03:49:53,080 SURE I HAD THIS ALL FIGURED 4699 03:49:53,080 --> 03:49:54,080 OUT. 4700 03:49:54,080 --> 03:49:57,160 I THINK MONICA SAID WE CREATED 4701 03:49:57,160 --> 03:50:04,640 A SAFE SPACE NOT ONLY FOR 4702 03:50:04,640 --> 03:50:09,040 STAFF TO STAFF ENGAGEMENT BUT 4703 03:50:09,040 --> 03:50:15,120 TO LEADERSHIP AND WE HAVE BEEN 4704 03:50:15,120 --> 03:50:15,920 REALLY FORTUNATE A NUMBER OF 4705 03:50:15,920 --> 03:50:24,400 OUR STAFF HAVE HAD THE COURAGE 4706 03:50:24,400 --> 03:50:25,880 TO KNOCK ON THE VIRTUAL DOOR 4707 03:50:25,880 --> 03:50:30,720 TO SAY WE REALLY NEED TO HAVE 4708 03:50:30,720 --> 03:50:34,240 A TALK. 4709 03:50:34,240 --> 03:50:41,680 A CANDID TALK AFRICAN-AMERICAN 4710 03:50:41,680 --> 03:50:44,600 GROUP AND THE ASIAN PACIFIC 4711 03:50:44,600 --> 03:50:51,040 ISLANDERS GROUP WE HAVE HAD 4712 03:50:51,040 --> 03:50:51,640 ALL THE GROUPS COME TO 4713 03:50:51,640 --> 03:51:00,600 LEADERSHIP AND INDIVIDUALS AND 4714 03:51:00,600 --> 03:51:01,160 THOSE WHO HAD THE COURAGE TO 4715 03:51:01,160 --> 03:51:03,240 SAY WHAT NEEDED TO BE SAID. 4716 03:51:03,240 --> 03:51:13,600 THERE IS NO ONE THING BUT 4717 03:51:13,600 --> 03:51:21,520 OFFERED IT BUT THEN TO STAY 4718 03:51:21,520 --> 03:51:23,000 THE HECK OUT OF THE WAY AND 4719 03:51:23,000 --> 03:51:24,640 APPARENTLY —- EMPOWER THEM TO 4720 03:51:24,640 --> 03:51:25,160 DO WHAT THEY NEED TO DO. 4721 03:51:25,160 --> 03:51:26,600 >>AND TO CONTINUE HEARING 4722 03:51:26,600 --> 03:51:27,160 FROM THEM BECAUSE ONE OF THE 4723 03:51:27,160 --> 03:51:30,880 THINGS THAT WE LEARNED TO 4724 03:51:30,880 --> 03:51:32,240 REINFORCE IS NOT A ONE OFF FOR 4725 03:51:32,240 --> 03:51:38,160 ONE AND DONE WE DID A 4726 03:51:38,160 --> 03:51:38,680 LISTENING SESSION WITH THE 4727 03:51:38,680 --> 03:51:39,240 STAFF OR THE TEAM AND NOW WE 4728 03:51:39,240 --> 03:51:44,920 KNOW ALL THE ISSUES. 4729 03:51:44,920 --> 03:51:45,480 WE CONTINUE TO HAVE LOTS OF 4730 03:51:45,480 --> 03:51:46,080 ENGAGEMENT AND WORKING ON WAYS 4731 03:51:46,080 --> 03:51:48,000 TO FIGURE OUT THE BEST WAYS TO 4732 03:51:48,000 --> 03:51:48,560 ENGAGE PEOPLE TO HEAR THAT 4733 03:51:48,560 --> 03:51:54,920 INFORMATION AND GATHER THAT. 4734 03:51:54,920 --> 03:51:55,440 >>WHEN I WAS GOING TO SAY 4735 03:51:55,440 --> 03:52:01,760 FOLLOWS DIRECTLY ON THAT POINT 4736 03:52:01,760 --> 03:52:02,160 WHICH IS THE ONGOING 4737 03:52:02,160 --> 03:52:03,800 ENGAGEMENT NOT ONLY WITHIN NIH 4738 03:52:03,800 --> 03:52:08,000 BUT OUT THERE IN THE 4739 03:52:08,000 --> 03:52:08,520 EXTRAMURAL WORLD WITH THE 4740 03:52:08,520 --> 03:52:08,960 INSTITUTIONS TO HAVE 4741 03:52:08,960 --> 03:52:14,080 COMPLIANCE AND A REGULATION 4742 03:52:14,080 --> 03:52:14,680 THAT PEOPLE DO CULTURE CHANGE 4743 03:52:14,680 --> 03:52:16,960 MAINLY FROM TALKING TO EACH 4744 03:52:16,960 --> 03:52:18,400 OTHER AND THAT WORKS A LOT 4745 03:52:18,400 --> 03:52:21,320 BETTER THAN THAT COMPLIANCE 4746 03:52:21,320 --> 03:52:21,960 STICK. 4747 03:52:21,960 --> 03:52:22,440 PEOPLE SHARING THEIR 4748 03:52:22,440 --> 03:52:25,960 EXPERIENCES STRUGGLE WITH 4749 03:52:25,960 --> 03:52:29,400 FIGURING IT OUT. 4750 03:52:29,400 --> 03:52:29,920 SO IT IS IMPRESSIVE AND 4751 03:52:29,920 --> 03:52:30,520 RESONATES FOR A LOT OF US WITH 4752 03:52:30,520 --> 03:52:40,640 THAT KIND OF EXPERIENCE. 4753 03:52:40,640 --> 03:52:41,080 SO TO TALK ABOUT THE 4754 03:52:41,080 --> 03:52:41,680 SUSTAINABILITY OF THE FORWARD 4755 03:52:41,680 --> 03:52:42,240 PROGRESS DOING THAT WITH THE 4756 03:52:42,240 --> 03:52:44,760 EXTERNAL COMMUNITY AND THEN 4757 03:52:44,760 --> 03:52:52,640 THAT LEADS TO THE MICRO POINT 4758 03:52:52,640 --> 03:52:53,240 THAT IS NOT SO MICRO THAT AS 4759 03:52:53,240 --> 03:52:55,480 THE POSTDOC STUDY BEGINS IN 4760 03:52:55,480 --> 03:53:02,000 WHAT CONCERNS STUDENTS WE HAVE 4761 03:53:02,000 --> 03:53:02,560 FROM THE INTERNATIONAL GROUP 4762 03:53:02,560 --> 03:53:05,080 AND ONE OF THE GROUPS THAT I 4763 03:53:05,080 --> 03:53:12,160 FIND IS BAFFLED AND CONFUSED 4764 03:53:12,160 --> 03:53:12,760 AND HAVING A DIFFICULT TIME 4765 03:53:12,760 --> 03:53:13,280 ARE PEOPLE EXPERIENCING A 4766 03:53:13,280 --> 03:53:19,960 CULTURE SHOCK AND FOR 4767 03:53:19,960 --> 03:53:20,440 SOMETHING TO UNDERSTAND 4768 03:53:20,440 --> 03:53:28,240 SOMETHING AS GENERATIONAL NOT 4769 03:53:28,240 --> 03:53:28,840 ANY GOOD SPECIFIC GUIDANCE OF 4770 03:53:28,840 --> 03:53:31,640 WHERE YOU START WITH THAT 4771 03:53:31,640 --> 03:53:32,680 WHICH IS A GOOD DOABLE 4772 03:53:32,680 --> 03:53:41,720 CULTURAL STEW. 4773 03:53:41,720 --> 03:53:42,600 I IT COMES AS WE CONSIDER THE 4774 03:53:42,600 --> 03:53:53,080 POPULATIONS GOING FORWARD ON 4775 03:53:55,440 --> 03:53:55,880 —- THINK UTAH THOSE WHO 4776 03:53:55,880 --> 03:53:58,360 PRESENTED TODAY WE ARE VERY 4777 03:53:58,360 --> 03:53:59,640 GRATEFUL. 4778 03:53:59,640 --> 03:54:02,440 WE WILL KEEP THIS GOING. 4779 03:54:02,440 --> 03:54:09,360 IT'S TWO IMPORTANT. 4780 03:54:09,360 --> 03:54:09,960 OKAY YOU HAVE HUNG IN HERE FOR 4781 03:54:09,960 --> 03:54:14,760 TWO SOLID DAYS TALK ABOUT 4782 03:54:14,760 --> 03:54:17,320 MARATHONS. 4783 03:54:17,320 --> 03:54:17,840 I REALLY DO APPRECIATE THE 4784 03:54:17,840 --> 03:54:26,400 INCREDIBLE AMOUNT OF TIME THE 4785 03:54:26,400 --> 03:54:26,960 MEMBERS MAKE FOR US BUT THIS 4786 03:54:26,960 --> 03:54:27,480 IS A COMMITTEE THAT REALLY 4787 03:54:27,480 --> 03:54:28,040 MAKES A DIFFERENCE AND THOSE 4788 03:54:28,040 --> 03:54:34,640 OF YOU WHO ARE CYCLING OFF SO 4789 03:54:34,640 --> 03:54:41,800 WHEN THE CALL OR E-MAIL COMES 4790 03:54:41,800 --> 03:54:45,080 IN THOSE NEW TO THE COMMITTEE 4791 03:54:45,080 --> 03:54:47,720 HOW MUCH IMPACT YOU CAN HAVE 4792 03:54:47,720 --> 03:54:50,240 ON THIS COMMITTEE. 4793 03:54:50,240 --> 03:54:50,760 I DON'T KNOW WHAT ALL THE 4794 03:54:50,760 --> 03:54:57,200 TOPICS WILL BE BECAUSE THE 4795 03:54:57,200 --> 03:54:57,800 THING YOU ARE MOST CONSUMED 4796 03:54:57,800 --> 03:54:58,400 WITH WITH YOUR TENURE HAS NOT 4797 03:54:58,400 --> 03:55:01,640 BEEN DEFINED YET IT'S JUST THE 4798 03:55:01,640 --> 03:55:01,880 WAY IT IS. 4799 03:55:01,880 --> 03:55:04,440 BUT I AM ABSOLUTELY CERTAIN 4800 03:55:04,440 --> 03:55:07,560 THERE WILL BE VERY IMPORTANT 4801 03:55:07,560 --> 03:55:10,720 TOPICS TO GRAPPLE WITH WE 4802 03:55:10,720 --> 03:55:12,080 LAUNCHED A COUPLE YESTERDAY 4803 03:55:12,080 --> 03:55:16,000 BUT THAT'S JUST A COUPLE THERE 4804 03:55:16,000 --> 03:55:18,720 WILL BE MANY MORE THAT FOLLOW 4805 03:55:18,720 --> 03:55:22,360 SO AGAIN, THANK YOU ALL AND 4806 03:55:22,360 --> 03:55:26,400 THOSE OF YOU WHO TRAVEL, SAFE 4807 03:55:26,400 --> 03:55:28,720 TRAVELS HOME AND IF YOU ARE ON 4808 03:55:28,720 --> 03:55:31,800 ZOOM BEST WISHES GOING 4809 03:55:31,800 --> 03:55:32,480 FORWARD. 4810 03:55:32,480 --> 03:55:37,600 HAPPY HOLIDAY SEASONS IT TOOK 4811 03:55:37,600 --> 03:55:46,200 TWO DAYS BUT I WILL HIT THIS. 4812 03:55:46,200 --> 03:55:47,360 WE ARE ADJOURNED. 4813 03:55:47,360 --> 03:55:50,200 [LAUGHTER] 4814 03:55:50,200 --> 03:55:54,200 >>THANK YOU SO MUCH FOR ALL 4815 03:55:54,200 --> 03:56:04,440 OF YOUR WORK.