1 00:00:06,258 --> 00:00:08,294 WELCOME TO THE NATIONAL 2 00:00:08,294 --> 00:00:09,828 ADVISORY BOARD ON MEDICAL 3 00:00:09,828 --> 00:00:12,698 REHABILITATION RESEARCH COMING 4 00:00:12,698 --> 00:00:13,666 FROM THE NIH. 5 00:00:13,666 --> 00:00:19,138 WE'RE GOING TO START BY GOING 6 00:00:19,138 --> 00:00:23,409 AROUND WITH INTRODUCTIONS, SO 7 00:00:23,409 --> 00:00:25,277 I'M GOING TO START BY HAVING THE 8 00:00:25,277 --> 00:00:27,680 CHAIR OF THE BOARD BARBARA 9 00:00:27,680 --> 00:00:28,681 BREGMAN MAKE THE INTRODUCTIONS 10 00:00:28,681 --> 00:00:32,184 FROM TEAM IN THE ROOM AND PEOPLE 11 00:00:32,184 --> 00:00:40,059 THAT ARE JOINING US FROM THE 12 00:00:40,059 --> 00:00:40,426 ZOOM WORLD. 13 00:00:40,426 --> 00:00:43,362 >> THANKS. 14 00:00:43,362 --> 00:00:46,432 I AM THE INTERIM CHAIR OF REHAB 15 00:00:46,432 --> 00:00:50,569 MEDICINE GEORGETOWN UNIVERSITY, 16 00:00:50,569 --> 00:00:52,004 DIRECTOR OF RESEARCH AND 17 00:00:52,004 --> 00:00:53,706 TRAINING AT MEDSTAR NATIONAL 18 00:00:53,706 --> 00:00:54,406 REHABILITATION TRAINING 19 00:00:54,406 --> 00:00:55,274 HOSPITAL. 20 00:00:55,274 --> 00:00:59,445 AS WE GO AROUND, IF THOSE OF US 21 00:00:59,445 --> 00:01:01,880 WHO ARE CONTINUING MEMBERS CAN 22 00:01:01,880 --> 00:01:03,816 JUST STAY WHERE YOU'RE FROM AND 23 00:01:03,816 --> 00:01:05,818 WE'LL ASK THE NEW MEMBERS TO SAY 24 00:01:05,818 --> 00:01:08,253 A LITTLE BIT MORE ABOUT THEIR 25 00:01:08,253 --> 00:01:09,455 BACKGROUND AND THEIR INTERESTS. 26 00:01:09,455 --> 00:01:12,491 AND SO IF WE CAN GO AROUND THE 27 00:01:12,491 --> 00:01:20,566 TABLE I WILL START WITH BOB OVER 28 00:01:20,566 --> 00:01:20,766 THERE. 29 00:01:20,766 --> 00:01:26,305 >> BOB SANBERG, PENN STATE 30 00:01:26,305 --> 00:01:26,605 UNIVERSITY. 31 00:01:26,605 --> 00:01:31,310 >> UNIVERSITY OF HOUSTON, PEPE 32 00:01:31,310 --> 00:01:31,577 CONTRERAS. 33 00:01:31,577 --> 00:01:36,882 >> KATHY ZAKOWSKI. 34 00:01:36,882 --> 00:01:45,691 >> DAWN EDIE, UNIVERSITY OF 35 00:01:45,691 --> 00:01:45,991 WASHINGTON. 36 00:01:45,991 --> 00:01:48,961 >> LINDA EHRLICH JONES FROM THE 37 00:01:48,961 --> 00:01:49,662 LAB. 38 00:01:49,662 --> 00:01:52,398 I'M NURSE BY BACKGROUND, 39 00:01:52,398 --> 00:01:54,299 ASSOCIATE DIRECTOR OF PATIENT 40 00:01:54,299 --> 00:01:56,201 OUTCOMES RESEARCH, ALSO A 41 00:01:56,201 --> 00:01:59,071 RESEARCH PROFESSOR AT 42 00:01:59,071 --> 00:02:02,307 NORTHWESTERN UNIVERSITY FEINBERG 43 00:02:02,307 --> 00:02:03,242 SCHOOL OF MEDICINE. 44 00:02:03,242 --> 00:02:11,884 >> TRISHA D DOOR, REHABILITATION 45 00:02:11,884 --> 00:02:13,052 AND DEPARTMENT OF VETERANS 46 00:02:13,052 --> 00:02:13,285 AFFAIRS. 47 00:02:13,285 --> 00:02:22,361 >> THERE'S AN ERROR ON THE 48 00:02:22,361 --> 00:02:25,631 AGENDA, IT'S VETERAN AFFAIRS. 49 00:02:25,631 --> 00:02:27,733 >> DIRECT IMPROVE MEDICAL CENTER 50 00:02:27,733 --> 00:02:28,400 FOR NATIONAL REHABILITATION 51 00:02:28,400 --> 00:02:29,802 RESEARCH, THE REASON YOU'RE 52 00:02:29,802 --> 00:02:30,302 HERE. 53 00:02:30,302 --> 00:02:32,104 THANKS YOU FOR COMING. 54 00:02:32,104 --> 00:02:38,944 AND I'M LOOKING FORWARD TO THE 55 00:02:38,944 --> 00:02:40,713 NEXT COUPLE DAYS. 56 00:02:40,713 --> 00:02:43,048 >> EMORY UNIVERSITY, AND MY AREA 57 00:02:43,048 --> 00:02:46,452 OF RESEARCH IS IN CAREGIVING AND 58 00:02:46,452 --> 00:02:47,753 STROKE, SARAH BLANTON, EDITOR OF 59 00:02:47,753 --> 00:02:57,396 THE JOURNAL OF COMMUNITIES AND 60 00:02:57,396 --> 00:02:57,763 REHABILITATION. 61 00:02:57,763 --> 00:02:58,630 >> WELCOME. 62 00:02:58,630 --> 00:03:02,735 >> PHYSICIAN AND RESEARCHER, 63 00:03:02,735 --> 00:03:06,772 INDIANA RESEARCH, DO MOSTLY 64 00:03:06,772 --> 00:03:08,173 BRAIN INJURY RESEARCH. 65 00:03:08,173 --> 00:03:14,646 >> MICHELLE JOHNSON, UNIVERSITY 66 00:03:14,646 --> 00:03:15,848 OF PENNSYLVANIA. 67 00:03:15,848 --> 00:03:18,283 >> GOOD MORNING, DAUFIN CHEN, 68 00:03:18,283 --> 00:03:25,524 NATIONAL NATIONAL INSTITUTE OF 69 00:03:25,524 --> 00:03:26,492 NEUROLOGICAL DISORDER AND 70 00:03:26,492 --> 00:03:26,725 STROKE. 71 00:03:26,725 --> 00:03:29,294 >> IF WE CAN GET THE FOLKS WHO 72 00:03:29,294 --> 00:03:36,902 ARE JOINING US ON THE SCREEN TO 73 00:03:36,902 --> 00:03:38,070 PLEASE INTRODUCE YOURSELVES. 74 00:03:38,070 --> 00:03:44,543 I CAN'T SEE VERY WELL, I'LL 75 00:03:44,543 --> 00:03:52,251 HELP. 76 00:03:52,251 --> 00:03:52,584 STEVE KATAN. 77 00:03:52,584 --> 00:03:56,488 >> CHRIS JADEN, UNIVERSITY OF 78 00:03:56,488 --> 00:03:57,756 BUFFALO. 79 00:03:57,756 --> 00:03:58,090 >> AND SHERRY. 80 00:03:58,090 --> 00:04:02,594 >> GOOD MORNING, SPALDING REHAB 81 00:04:02,594 --> 00:04:04,096 HOSPITAL, HARVARD MEDICAL 82 00:04:04,096 --> 00:04:04,429 SCHOOL. 83 00:04:04,429 --> 00:04:06,298 >> FRANCISCO, YOU'RE MOVING 84 00:04:06,298 --> 00:04:10,335 AROUND ON ME, SORRY. 85 00:04:10,335 --> 00:04:12,638 >> YES, GOOD MORNING, FRANCISCO, 86 00:04:12,638 --> 00:04:15,174 UNIVERSITY OF SOUTHERN 87 00:04:15,174 --> 00:04:22,181 CALIFORNIA IN LOS ANGELES. 88 00:04:22,181 --> 00:04:22,447 >> LOUIS? 89 00:04:22,447 --> 00:04:28,320 >> GOOD MORNING, LOUIS, GEORGIA 90 00:04:28,320 --> 00:04:28,520 TECH. 91 00:04:28,520 --> 00:04:30,522 >> CHIEF OF TECHNICAL ASSISTANCE 92 00:04:30,522 --> 00:04:31,256 UNIT REHABILITATION SERVICES 93 00:04:31,256 --> 00:04:35,427 ADMINISTRATION AT THE DEPARTMENT 94 00:04:35,427 --> 00:04:35,861 OF EDUCATION. 95 00:04:35,861 --> 00:04:37,930 >> AND WADE, I DON'T SEE YOUR 96 00:04:37,930 --> 00:04:39,731 VIDEO BUT I HOPE YOU'RE THERE. 97 00:04:39,731 --> 00:04:41,967 >> I'M HERE, CAN YOU HEAR ME? 98 00:04:41,967 --> 00:04:42,201 >> YES. 99 00:04:42,201 --> 00:04:43,435 >> I'M HAVING CAMERA PROBLEMS. 100 00:04:43,435 --> 00:04:45,103 IT WAS WORKING EARLIER SO I'LL 101 00:04:45,103 --> 00:04:48,740 WORK ON THAT. 102 00:04:48,740 --> 00:04:54,646 WADE SCHRADER, PEDIATRIC 103 00:04:54,646 --> 00:04:56,849 ORTHOPEDIC SURGEON, NEMOURS, AND 104 00:04:56,849 --> 00:04:58,050 PROFESSOR AT THOMAS JEFFERSON 105 00:04:58,050 --> 00:05:05,057 UNIVERSITY, CHAIR OF CEREBRAL 106 00:05:05,057 --> 00:05:05,257 PALSY. 107 00:05:05,257 --> 00:05:09,194 >> THANKS, WADE. 108 00:05:09,194 --> 00:05:14,833 A COUPLE EX OFFICIOS JUMPED ON 109 00:05:14,833 --> 00:05:15,234 THE SCREEN. 110 00:05:15,234 --> 00:05:16,635 ARE THEY STILL THERE? 111 00:05:16,635 --> 00:05:20,038 I WANT TO GET THE EX OFFICIOS 112 00:05:20,038 --> 00:05:20,739 FIRST. 113 00:05:20,739 --> 00:05:22,875 NOPE, WE LOST THEM? 114 00:05:22,875 --> 00:05:30,449 STEVE IS NOT HERE YESTERDAY. 115 00:05:30,449 --> 00:05:34,386 116 00:05:34,386 --> 00:05:40,392 >> GOOD MORNING, LYNDON JOSEPH, 117 00:05:40,392 --> 00:05:43,028 NATIONAL INSTITUTE ON AGING, AND 118 00:05:43,028 --> 00:05:46,198 GLAD TO TO BE WITH YOU, LOOKING 119 00:05:46,198 --> 00:05:56,608 FORWARD TO THE MEETING. 120 00:05:57,843 --> 00:05:59,011 >> THANKS, LYNDON. 121 00:05:59,011 --> 00:06:02,080 >> GOOD MORNING, EVERYONE. 122 00:06:02,080 --> 00:06:04,349 I'M A PROGRAM DIRECTOR FROM THE 123 00:06:04,349 --> 00:06:06,018 NATIONAL INSTITUTE ON DEAFNESS 124 00:06:06,018 --> 00:06:13,025 AND OTHER COMMUNICATION 125 00:06:13,025 --> 00:06:14,660 DISORDERS. 126 00:06:14,660 --> 00:06:14,993 THANK YOU. 127 00:06:14,993 --> 00:06:21,233 >> RICK SEGAL, OUR GUEST. 128 00:06:21,233 --> 00:06:25,170 >> MEDICAL UNIVERSITY OF SOUTH 129 00:06:25,170 --> 00:06:28,273 CAROLINA, HERE REPRESENTING THE 130 00:06:28,273 --> 00:06:33,145 MR3 NETWORK. 131 00:06:33,145 --> 00:06:36,548 >> WE WANT TO ADD ONE OTHER EX 132 00:06:36,548 --> 00:06:42,487 OFFICIO THAT JUST JOINED. 133 00:06:42,487 --> 00:06:48,627 >> DIRECTOR OF NIDILRR. 134 00:06:48,627 --> 00:06:52,197 AND THEN IF THE STAFF COULD WAVE 135 00:06:52,197 --> 00:06:52,731 AND SAY HI. 136 00:06:52,731 --> 00:06:55,167 >> ARE THERE ANY OTHER EX 137 00:06:55,167 --> 00:07:04,042 OFFICIOS WHO JOINED US ONLINE? 138 00:07:04,042 --> 00:07:05,043 OKAY. 139 00:07:05,043 --> 00:07:06,445 WE'LL CATCH THEM LATER. 140 00:07:06,445 --> 00:07:09,281 >> SO JUST SO YOU'RE PLANNING 141 00:07:09,281 --> 00:07:14,419 AHEAD, THE NEXT MEETING WILL BE 142 00:07:14,419 --> 00:07:16,521 MONDAY AND TUESDAY, FIRST WEEK 143 00:07:16,521 --> 00:07:17,923 OF MAY. 144 00:07:17,923 --> 00:07:20,459 AND THEN MONDAY, TUESDAY, FIRST 145 00:07:20,459 --> 00:07:22,294 WEEK OF DECEMBER FOLLOWING THAT. 146 00:07:22,294 --> 00:07:24,162 I THINK IT SHOULD BE IN YOUR 147 00:07:24,162 --> 00:07:24,696 NOTES. 148 00:07:24,696 --> 00:07:32,504 GET IT ON YOUR CALENDAR NOW. 149 00:07:32,504 --> 00:07:33,672 SO YOU DON'T UNEXPECTEDLY 150 00:07:33,672 --> 00:07:34,439 OVERBOOK. 151 00:07:34,439 --> 00:07:38,176 THE MEETING IS BEING RECORDED. 152 00:07:38,176 --> 00:07:41,113 SO THAT YOU KNOW THAT. 153 00:07:41,113 --> 00:07:43,782 AND WILL BE AVAILABLE LATER IF 154 00:07:43,782 --> 00:07:46,518 YOU WANT TO GO BACK, OR SHARE IT 155 00:07:46,518 --> 00:07:51,757 WITH ANY OF YOUR COLLEAGUES. 156 00:07:51,757 --> 00:07:58,296 157 00:07:58,296 --> 00:08:00,065 SO, YES, YOU'VE HAD A CHANCE TO 158 00:08:00,065 --> 00:08:01,299 REVIEW THE MINUTES. 159 00:08:01,299 --> 00:08:05,537 CAN I ASK IF THERE ARE ANY 160 00:08:05,537 --> 00:08:07,706 CHANGES OR IF ANYONE WOULD GO 161 00:08:07,706 --> 00:08:13,678 AHEAD AND MOVE TO ACCEPT? 162 00:08:13,678 --> 00:08:18,050 >> (INAUDIBLE). 163 00:08:18,050 --> 00:08:19,418 >> GOOD MORNING, I WANT TO ALSO 164 00:08:19,418 --> 00:08:29,961 INTRODUCE MYSELF IF I MAY, STEVE 165 00:08:30,662 --> 00:08:31,930 CRAMER, WHERE THE SUN HASN'T 166 00:08:31,930 --> 00:08:33,231 COME UP YET. 167 00:08:33,231 --> 00:08:34,633 I STILL HAVEN'T BEEN CLEARED SO 168 00:08:34,633 --> 00:08:35,967 I'M AD HOC. 169 00:08:35,967 --> 00:08:36,468 GOOD MORNING, EVERYONE. 170 00:08:36,468 --> 00:08:42,974 >> GREAT TO HAVE YOU, STEVE. 171 00:08:42,974 --> 00:08:46,044 >> THANKS, STEVE. 172 00:08:46,044 --> 00:08:47,779 >> DO WE HAVE A MOTION? 173 00:08:47,779 --> 00:08:50,949 >> A MOTION TO -- YES, WE HAVE A 174 00:08:50,949 --> 00:08:51,316 MOTION. 175 00:08:51,316 --> 00:08:51,516 GOOD. 176 00:08:51,516 --> 00:08:52,984 >> DO WE HAVE A SECOND? 177 00:08:52,984 --> 00:08:55,253 >> OKAY, AND IF YOU HAVE 178 00:08:55,253 --> 00:08:55,787 CONSEQUENT CHANGES OR 179 00:08:55,787 --> 00:08:58,090 CORRECTIONS TO THE MINUTES OR 180 00:08:58,090 --> 00:09:00,058 EVEN TO THE ROSTER, FEEL FREE TO 181 00:09:00,058 --> 00:09:03,228 LET ME KNOW AND WE'LL KEEP THEM 182 00:09:03,228 --> 00:09:03,595 UPDATED. 183 00:09:03,595 --> 00:09:04,329 THANK YOU. 184 00:09:04,329 --> 00:09:06,832 NOW WE'LL HAVE A VOTE TO ACCEPT 185 00:09:06,832 --> 00:09:07,933 THE MINUTES. 186 00:09:07,933 --> 00:09:10,335 ALL IN FAVOR OF ACCEPTING RAISE 187 00:09:10,335 --> 00:09:11,636 YOUR HAND INCLUDING THOSE 188 00:09:11,636 --> 00:09:12,204 ONLINE. 189 00:09:12,204 --> 00:09:18,310 THANK YOU. 190 00:09:18,310 --> 00:09:21,012 ANY OPPOSED? 191 00:09:21,012 --> 00:09:23,648 ALL RIGHT, THANK YOU. 192 00:09:23,648 --> 00:09:33,825 BARBARA? 193 00:09:34,493 --> 00:09:37,829 >> DO WE HAVE DR. BIANCHI YET? 194 00:09:37,829 --> 00:09:38,597 WE'RE TOO EARLY. 195 00:09:38,597 --> 00:09:40,365 WE'LL SWITCH THINGS UP. 196 00:09:40,365 --> 00:09:48,773 I'LL DO MY UPDATE FIRST. 197 00:09:48,773 --> 00:09:52,377 WE WERE TOO EFFICIENT. 198 00:09:52,377 --> 00:09:58,416 199 00:09:58,416 --> 00:10:08,460 200 00:10:09,361 --> 00:10:13,932 >> ALSO, DO WE HAVE OUR DoD 201 00:10:13,932 --> 00:10:16,434 REPRESENTATIVE THERE YET? 202 00:10:16,434 --> 00:10:19,004 I THINK IT'S MATTHEW. 203 00:10:19,004 --> 00:10:22,641 >> YES, GOOD MORNING, I'M HERE. 204 00:10:22,641 --> 00:10:28,914 LIEUTENANT COLONEL MATT LOPREST 205 00:10:28,914 --> 00:10:30,148 HERE REPRESENTING THE DIRECTOR, 206 00:10:30,148 --> 00:10:32,551 I'M THE DIRECTOR OF 207 00:10:32,551 --> 00:10:34,052 PSYCHOLOGICAL HEALTH. 208 00:10:34,052 --> 00:10:34,619 OVER. 209 00:10:34,619 --> 00:10:34,953 >> OKAY. 210 00:10:34,953 --> 00:10:37,255 APPRECIATE YOU JOINING US. 211 00:10:37,255 --> 00:10:42,827 I GUESS WE'RE ALL SET NOW. 212 00:10:42,827 --> 00:10:43,094 GO AHEAD. 213 00:10:43,094 --> 00:10:45,964 >> GIVE ME A WAVE WHEN DR. 214 00:10:45,964 --> 00:10:50,001 BIANCHI GETS ON, THANK YOU. 215 00:10:50,001 --> 00:10:50,802 NEXT SLIDE. 216 00:10:50,802 --> 00:10:57,809 I'D LIKE TO TALK ABOUT STAFF 217 00:10:57,809 --> 00:10:59,945 UPDATES AND THE COLLABORATIONS 218 00:10:59,945 --> 00:11:01,880 WE HAVE, HIT ON SCIENCE ADVANCES 219 00:11:01,880 --> 00:11:06,885 BECAUSE THAT'S WHY YOU'RE MOSTLY 220 00:11:06,885 --> 00:11:08,753 HERE, THE COOL SCIENCE, LEAVING 221 00:11:08,753 --> 00:11:12,457 TIME FOR QUESTIONS. 222 00:11:12,457 --> 00:11:13,158 NEXT SLIDE. 223 00:11:13,158 --> 00:11:17,128 WE HAVE A NEW STAFF MEMBER SINCE 224 00:11:17,128 --> 00:11:17,395 MAY. 225 00:11:17,395 --> 00:11:23,768 JUNE L LEE. 226 00:11:23,768 --> 00:11:24,636 SAY HI. 227 00:11:24,636 --> 00:11:25,937 JUNE HAS MANY YEARS OF 228 00:11:25,937 --> 00:11:27,606 EXPERIENCE AT NIH, COMING ON TO 229 00:11:27,606 --> 00:11:30,642 HELP ME AT SPECIAL ASSISTANT. 230 00:11:30,642 --> 00:11:32,310 BACKGROUND IN PHARMACOLOGY. 231 00:11:32,310 --> 00:11:34,479 BUT HER PASSION IS IN ARTIFICIAL 232 00:11:34,479 --> 00:11:35,680 INTELLIGENCE, SO YOU MAY BE 233 00:11:35,680 --> 00:11:39,651 SEEING SOME MORE OF THAT COMING 234 00:11:39,651 --> 00:11:39,884 THROUGH. 235 00:11:39,884 --> 00:11:41,186 WE'RE GLAD TO HAVE HER. 236 00:11:41,186 --> 00:11:46,758 A SHOUT OUT TO TOYIN AJISAFE, A 237 00:11:46,758 --> 00:11:48,059 PROGRAM OFFICER, RECENTLY 238 00:11:48,059 --> 00:11:48,927 COMPLETED SOME LEADERSHIP 239 00:11:48,927 --> 00:11:49,194 TRAINING. 240 00:11:49,194 --> 00:11:51,463 JOE IS GOING TO BE STARTING MORE 241 00:11:51,463 --> 00:11:52,864 LEADERSHIP TRAINING SO WE 242 00:11:52,864 --> 00:11:55,934 CONTINUE TO GROW OUR STAFF. 243 00:11:55,934 --> 00:11:59,437 AND THEN BECAUSE I LIKE TO BRAG 244 00:11:59,437 --> 00:12:01,606 ABOUT THEM, WE HAD A VERY 245 00:12:01,606 --> 00:12:05,877 SUCCESSFUL YEAR IN GETTING 246 00:12:05,877 --> 00:12:07,646 AWARDS AT NICHD. 247 00:12:07,646 --> 00:12:10,515 JOE, SUE, MARIA ALL GOT 248 00:12:10,515 --> 00:12:11,182 DIRECTOR'S AWARD, THEY WERE 249 00:12:11,182 --> 00:12:13,018 GOING TO GET THEM IN PERSON NEXT 250 00:12:13,018 --> 00:12:14,753 WEEK BUT WE HAD SCHEDULED ISSUES 251 00:12:14,753 --> 00:12:18,690 SO THEY WILL GET THEM IN JANUARY 252 00:12:18,690 --> 00:12:19,291 OR FEBRUARY. 253 00:12:19,291 --> 00:12:21,426 BUT VERY PROUD OF THE WORK THEY 254 00:12:21,426 --> 00:12:23,295 HAVE BEEN DOING AND HAVING THAT 255 00:12:23,295 --> 00:12:28,767 RECOGNIZED AT A HIGHER LEVEL. 256 00:12:28,767 --> 00:12:29,100 NEXT. 257 00:12:29,100 --> 00:12:34,906 I KNOW, BECAUSE I'M TRYING TO BE 258 00:12:34,906 --> 00:12:35,206 MODEST. 259 00:12:35,206 --> 00:12:35,640 I CAN'T. 260 00:12:35,640 --> 00:12:39,878 MY MOTHER WOULD BE SHAMEFUL. 261 00:12:39,878 --> 00:12:41,079 OKAY, NEXT. 262 00:12:41,079 --> 00:12:41,479 OKAY. 263 00:12:41,479 --> 00:12:42,480 ONE MORE, ALL RIGHT. 264 00:12:42,480 --> 00:12:44,249 SO I THINK YOU KNOW THAT THE 265 00:12:44,249 --> 00:12:45,650 MAIN THRUST WE'VE BEEN WORKING 266 00:12:45,650 --> 00:12:50,355 ON OVER THE LAST YEAR OR SO HAS 267 00:12:50,355 --> 00:12:52,991 BEEN IN PROMOTING ABLEISM 268 00:12:52,991 --> 00:12:53,958 RESEARCH AT NIH. 269 00:12:53,958 --> 00:12:57,362 I'M PLEASED TO SAY THAT WE HAD 270 00:12:57,362 --> 00:12:59,230 AN RFA WITH A DUE DATE LAST 271 00:12:59,230 --> 00:13:01,199 WEEK, SO THEY ARE COMING IN, I'M 272 00:13:01,199 --> 00:13:02,167 LOOKING AND I'M VERY EXCITED 273 00:13:02,167 --> 00:13:05,236 ABOUT THE NUMBER OF RESPONSES 274 00:13:05,236 --> 00:13:06,104 THAT WE'VE GOTTEN. 275 00:13:06,104 --> 00:13:09,841 BUT WE DON'T HAVE THE FINAL 276 00:13:09,841 --> 00:13:10,375 NUMBER YET. 277 00:13:10,375 --> 00:13:12,143 WE PROBABLY WON'T HAVE ANY 278 00:13:12,143 --> 00:13:14,212 AWARDS MADE BY FEBRUARY BUT A 279 00:13:14,212 --> 00:13:16,181 YEAR FROM NOW, BY MAY, NEXT TIME 280 00:13:16,181 --> 00:13:17,916 WE MEET, BUT A YEAR FROM NOW, 281 00:13:17,916 --> 00:13:22,520 WE'LL BE ABLE TO TALK ABOUT WHAT 282 00:13:22,520 --> 00:13:24,823 WAS SUPPORTED THROUGH THIS RFA. 283 00:13:24,823 --> 00:13:27,125 ANOTHER EXCITING PART OF THIS IS 284 00:13:27,125 --> 00:13:29,728 THAT WE HAD GREAT SIGN-ON FROM 285 00:13:29,728 --> 00:13:31,830 OTHER I.C.s AT NIH. 286 00:13:31,830 --> 00:13:34,933 SO THE NATIONAL EYE INSTITUTE, 287 00:13:34,933 --> 00:13:35,533 NATIONAL CANCER INSTITUTE, 288 00:13:35,533 --> 00:13:41,973 NATIONAL INSTITUTE OF 289 00:13:41,973 --> 00:13:42,607 BIOENGINEERING CONTRIBUTED FUNDS 290 00:13:42,607 --> 00:13:44,709 TO THIS OPPORTUNITY AND WE HAD 291 00:13:44,709 --> 00:13:47,479 SIGN-ON FROM OFFICE OF RESEARCH 292 00:13:47,479 --> 00:13:50,648 ON WOMEN'S HEALTH, AND OFFICE OF 293 00:13:50,648 --> 00:13:51,950 BEHAVIORAL AND SOCIAL SCIENCE, 294 00:13:51,950 --> 00:13:53,051 OBSSR. 295 00:13:53,051 --> 00:13:59,290 SO THIS IS REALLY SOMETHING LED 296 00:13:59,290 --> 00:14:02,260 BY NCMRR BUT IS ACROSS THE NIH. 297 00:14:02,260 --> 00:14:03,027 NEXT SLIDE. 298 00:14:03,027 --> 00:14:04,996 WE'VE ALSO MADE SOME CHANGES TO 299 00:14:04,996 --> 00:14:09,267 OUR EARLY CAREER RESEARCH AWARD, 300 00:14:09,267 --> 00:14:11,236 R 3, WE HEARD FROM THE FIELD 301 00:14:11,236 --> 00:14:13,738 THAT ONE DUE DATE WAS NOT 302 00:14:13,738 --> 00:14:16,808 SUFFICIENT, AND WE HEARD FROM 303 00:14:16,808 --> 00:14:18,543 OUR REVIEW BRANCH THAT THEY WERE 304 00:14:18,543 --> 00:14:20,111 GETTING TOO MANY APPLICATIONS IN 305 00:14:20,111 --> 00:14:21,946 ONE DUE DATE SO THESE ARE I 306 00:14:21,946 --> 00:14:24,048 THINK ALL VERY GOOD THINGS. 307 00:14:24,048 --> 00:14:26,918 SO, WE WERE ABLE TO SWITCH TO 308 00:14:26,918 --> 00:14:30,822 THREE TIMES A YEAR, SO NOW THEY 309 00:14:30,822 --> 00:14:35,760 WILL BE REVIEWED IN OUR REGULAR 310 00:14:35,760 --> 00:14:37,429 NCMRR STUDY SESSION RATHER THAN 311 00:14:37,429 --> 00:14:38,496 THIS SEPARATE SET. 312 00:14:38,496 --> 00:14:41,900 SO IT WILL BE EASIER FOR PEOPLE 313 00:14:41,900 --> 00:14:47,605 TO RESPOND AND RESUBMIT QUICKLY. 314 00:14:47,605 --> 00:14:47,806 OKAY. 315 00:14:47,806 --> 00:14:48,006 NEXT. 316 00:14:48,006 --> 00:14:49,340 I THINK A LOT OF PEOPLE HAVE 317 00:14:49,340 --> 00:14:51,976 BEEN SAYING IT'S NICE TO TRAVEL 318 00:14:51,976 --> 00:14:53,611 AGAIN. 319 00:14:53,611 --> 00:14:58,349 AND WE ARE FINALLY MAYBE IN THE 320 00:14:58,349 --> 00:14:59,317 POST-PANDEMIC WORLD, SO NCMRR 321 00:14:59,317 --> 00:15:02,053 STAFF HAS BEEN DOING A GREAT JOB 322 00:15:02,053 --> 00:15:04,122 OVER THE LAST SIX MONTHS GETTING 323 00:15:04,122 --> 00:15:06,624 OUT TO CONFERENCES, GETTING OUT 324 00:15:06,624 --> 00:15:07,625 TO SEE YOU ALL. 325 00:15:07,625 --> 00:15:10,028 THIS IS JUST THE ONES I COULD 326 00:15:10,028 --> 00:15:10,462 REMEMBER. 327 00:15:10,462 --> 00:15:16,801 SOME OF THEM WERE LOCAL, WE DID 328 00:15:16,801 --> 00:15:17,569 SOME SIGNIFICANT TRAVEL TOO. 329 00:15:17,569 --> 00:15:19,571 BUT IF THERE ARE WORKSHOPS, 330 00:15:19,571 --> 00:15:21,072 CONFERENCES THAT YOU THINK IT 331 00:15:21,072 --> 00:15:22,307 WOULD BENEFIT, YOU KNOW, THE 332 00:15:22,307 --> 00:15:24,909 FIELD AS WELL AS US, TO BE 333 00:15:24,909 --> 00:15:28,079 THERE, PLEASE LET US KNOW. 334 00:15:28,079 --> 00:15:30,949 AND WE'RE HAPPY TO SEE WHAT WE 335 00:15:30,949 --> 00:15:32,217 CAN DO AND EVERYBODY IS 336 00:15:32,217 --> 00:15:36,454 TRAVELING SO ALL THE PROGRAM 337 00:15:36,454 --> 00:15:39,057 OFFICERS, IT'S BEEN GREAT. 338 00:15:39,057 --> 00:15:41,693 NEXT SLIDE. 339 00:15:41,693 --> 00:15:43,761 I DID WANT TO CALL OUT ONE 340 00:15:43,761 --> 00:15:44,329 SPECIAL TRIP. 341 00:15:44,329 --> 00:15:49,567 IN JULY I GOT TO GO TO THE WORLD 342 00:15:49,567 --> 00:15:50,368 HEALTH ORGANIZATION HEADQUARTERS 343 00:15:50,368 --> 00:15:51,436 IN GENEVA. 344 00:15:51,436 --> 00:15:58,743 WE HAD THE THIRD GLOBAL REHAB 345 00:15:58,743 --> 00:15:59,644 2030 MEETING. 346 00:15:59,644 --> 00:16:03,348 AND THIS REALLY HAD TWO 347 00:16:03,348 --> 00:16:03,715 PURPOSES. 348 00:16:03,715 --> 00:16:06,184 ONE WAS WE WERE ACKNOWLEDGING 349 00:16:06,184 --> 00:16:09,153 THAT THE WORLD HELD ASSEMBLY HAD 350 00:16:09,153 --> 00:16:11,122 PASSED A RESOLUTION TO 351 00:16:11,122 --> 00:16:12,557 STRENGTHEN REHAB IN HEALTH 352 00:16:12,557 --> 00:16:13,057 SYSTEMS. 353 00:16:13,057 --> 00:16:14,692 AND THIS WAS REALLY THE FIRST 354 00:16:14,692 --> 00:16:17,395 TIME THAT W.H.O. HAD SAID REHAB 355 00:16:17,395 --> 00:16:19,364 IS IMPORTANT, IT NEEDS TO BE 356 00:16:19,364 --> 00:16:20,331 PART OF THE UNIVERSAL HEALTH 357 00:16:20,331 --> 00:16:22,734 CARE AND WE NEED TO DO THE 358 00:16:22,734 --> 00:16:26,037 RESEARCH TO SUPPORT THESE 359 00:16:26,037 --> 00:16:27,071 IMPLEMENTATION. 360 00:16:27,071 --> 00:16:29,207 SO A YEAR OR SO AGO, MAYBE A 361 00:16:29,207 --> 00:16:32,577 YEAR AND A HALF, WE HAD WALTER 362 00:16:32,577 --> 00:16:34,012 FRONTIERA, ONE OF THE CHAIRS OF 363 00:16:34,012 --> 00:16:35,313 THE RESEARCH LEG OF THIS 364 00:16:35,313 --> 00:16:37,148 PROGRAM, COME AND TALK TO YOU 365 00:16:37,148 --> 00:16:40,652 ALL AND TELL A LITTLE BIT ABOUT 366 00:16:40,652 --> 00:16:41,986 THE WORLD REHAB ALLIANCE, WHICH 367 00:16:41,986 --> 00:16:51,629 IS THE KIND OF NON-PROFIT -- IN 368 00:16:51,629 --> 00:16:53,831 THE MIDDLE THERE FROM W.H.O. SHE 369 00:16:53,831 --> 00:16:57,001 SAYS IT'S TWO SIDES OF THE SAME 370 00:16:57,001 --> 00:16:58,169 COIN, THE WORLD REHAB ALLIANCE 371 00:16:58,169 --> 00:17:01,139 ON ONE SIDE WHICH IS 372 00:17:01,139 --> 00:17:02,240 PROFESSIONAL ORGANIZATIONS, AND 373 00:17:02,240 --> 00:17:04,776 ON THE OTHER SIDE THIS REHAB 374 00:17:04,776 --> 00:17:06,377 2030 WHICH IS BUILDING THE 375 00:17:06,377 --> 00:17:08,146 EVIDENCE BASE. 376 00:17:08,146 --> 00:17:10,114 THEY PUT OUT SOME GREAT PRODUCTS 377 00:17:10,114 --> 00:17:11,416 OVER THE LAST FIVE YEARS THEY 378 00:17:11,416 --> 00:17:14,152 HAVE BEEN WORKING REALLY HARD ON 379 00:17:14,152 --> 00:17:17,021 THIS, AND NIH HAS SUPPORTED THEM 380 00:17:17,021 --> 00:17:19,524 IN PUTTING TOGETHER THESE 381 00:17:19,524 --> 00:17:21,492 PACKAGES OF PRIORITY SERVICES, 382 00:17:21,492 --> 00:17:24,095 AND PUTTING TOGETHER METRICS 383 00:17:24,095 --> 00:17:25,663 FROM MEASURING REHAB 384 00:17:25,663 --> 00:17:26,531 CAPABILITIES IN COUNTRIES SO 385 00:17:26,531 --> 00:17:28,933 THIS WAS REALLY EXCITING FOR ME. 386 00:17:28,933 --> 00:17:35,607 AND THEN ON THE LEFT IN THAT 387 00:17:35,607 --> 00:17:37,141 PICTURE IS LANA SHEKHAM 388 00:17:37,141 --> 00:17:38,676 REPRESENTING DEAFNESS AND 389 00:17:38,676 --> 00:17:40,878 COMMUNICATION DISORDERS, AND SHE 390 00:17:40,878 --> 00:17:43,281 RETIRED A COUPLE MONTHS AGO SO I 391 00:17:43,281 --> 00:17:45,450 WAS HAPPY TO HAVE ONE LAST TRIP 392 00:17:45,450 --> 00:17:49,520 WITH HER. 393 00:17:49,520 --> 00:17:52,724 OKAY. 394 00:17:52,724 --> 00:17:53,591 NEXT SLIDE. 395 00:17:53,591 --> 00:17:56,427 SOMETIMES COOL THINGS END UP IN 396 00:17:56,427 --> 00:17:59,030 MY IN BOX. 397 00:17:59,030 --> 00:18:02,467 WHILE AT ACRM I GOT THIS 398 00:18:02,467 --> 00:18:02,767 INVITATION. 399 00:18:02,767 --> 00:18:06,638 WHEN IT SAYS "FROM THE OFFICE OF 400 00:18:06,638 --> 00:18:07,872 THE PRESIDENT" I SHOULD PROBABLY 401 00:18:07,872 --> 00:18:09,273 GOING, AND IT WAS TWO DAYS 402 00:18:09,273 --> 00:18:10,675 LATER, SOMETHING LIKE THAT. 403 00:18:10,675 --> 00:18:15,380 SURE, ABSOLUTELY, I'D LOVE TO BE 404 00:18:15,380 --> 00:18:15,847 THERE. 405 00:18:15,847 --> 00:18:17,482 NEXT SLIDE. 406 00:18:17,482 --> 00:18:22,854 AND WHAT IT WAS WAS A 407 00:18:22,854 --> 00:18:24,155 CELEBRATION OF AMERICAN 408 00:18:24,155 --> 00:18:25,490 POSSIBILITIES. 409 00:18:25,490 --> 00:18:27,525 THERE'S THIS BIG DEMO ROOM, YOU 410 00:18:27,525 --> 00:18:29,627 KNOW, DISPLAY ROOM THAT HAD 411 00:18:29,627 --> 00:18:31,129 DIFFERENT SECTIONS AND ONE WAS 412 00:18:31,129 --> 00:18:33,231 ON HEALTH, ONE ON ARTIFICIAL 413 00:18:33,231 --> 00:18:37,001 INTELLIGENCE, ONE WAS MILITARY, 414 00:18:37,001 --> 00:18:39,170 ONE WAS SPACE, ONE WAS, I DON'T 415 00:18:39,170 --> 00:18:42,607 KNOW, SCIENCE STUFF. 416 00:18:42,607 --> 00:18:44,642 AND THE SECTION ON HEALTH CARE 417 00:18:44,642 --> 00:18:47,078 WAS ALL REHAB. 418 00:18:47,078 --> 00:18:48,680 SEVEN OF THE TEN DISPLAYS WERE 419 00:18:48,680 --> 00:18:50,014 OF REHAB. 420 00:18:50,014 --> 00:18:52,984 IT WAS JUST INCREDIBLE TO SEE 421 00:18:52,984 --> 00:18:54,719 HOW MUCH REPRESENTATION WE HAD. 422 00:18:54,719 --> 00:18:58,556 WE HAD PEOPLE FROM UCSF TALKING 423 00:18:58,556 --> 00:19:00,625 ABOUT THE BRAIN/COMPUTER ENTIRE 424 00:19:00,625 --> 00:19:06,197 FACE WORK, UPPER LIMB 425 00:19:06,197 --> 00:19:07,198 PROSTHETICS, RAMU JUNG 426 00:19:07,198 --> 00:19:08,733 UNIVERSITY OF ARKANSAS ON THE 427 00:19:08,733 --> 00:19:13,304 RIGHT SUPPORTED BY NIH AND 428 00:19:13,304 --> 00:19:18,476 OTHERS, MAINLY NIBIB. 429 00:19:18,476 --> 00:19:20,878 WE HAD LOTS OF V.A. 430 00:19:20,878 --> 00:19:23,581 REPRESENTATION, ON THE LEFT RORY 431 00:19:23,581 --> 00:19:26,684 COOPER IS HOLDING A LOW-COST 432 00:19:26,684 --> 00:19:28,553 LIGHT WEIGHT WHEELCHAIR, DOESN'T 433 00:19:28,553 --> 00:19:31,389 LOOK LIKE IT, BUT IT CAN BE -- 434 00:19:31,389 --> 00:19:35,093 THIS IS 25% SCALE BUT IT CAN BE 435 00:19:35,093 --> 00:19:37,528 SHIPPED FLAT ANYWHERE, AND THEN 436 00:19:37,528 --> 00:19:41,232 YOU FOLD IT TOGETHER, AND NOW 437 00:19:41,232 --> 00:19:44,102 YOU HAVE THIS LIGHTWEIGHT 438 00:19:44,102 --> 00:19:45,069 WHEELCHAIR. 439 00:19:45,069 --> 00:19:45,670 THERE'S HUGE POSSIBILITIES FOR 440 00:19:45,670 --> 00:19:48,706 OF COURSE PEDIATRICS AS WELL AS 441 00:19:48,706 --> 00:19:52,543 LOW LOW- AND MIDDLE-INCOME 442 00:19:52,543 --> 00:19:53,745 COUNTRIES, SUPPORTED LARGELY BY 443 00:19:53,745 --> 00:19:57,448 THE V.A., SO EXCITED TO SEE 444 00:19:57,448 --> 00:19:58,649 THAT. 445 00:19:58,649 --> 00:19:59,417 LOWER LIMB PROSTHETICS, 446 00:19:59,417 --> 00:20:00,985 EXOSKELETONS, GROUP FROM THE 447 00:20:00,985 --> 00:20:09,293 BRONX V.A. WAS THERE, AS WELL AS 448 00:20:09,293 --> 00:20:10,728 TEAM GLEASON DEMONSTRATING EYE 449 00:20:10,728 --> 00:20:20,371 GAZE COMMUNICATION AND 450 00:20:20,371 --> 00:20:22,006 WHEELCHAIR CONTROL FOR MS 451 00:20:22,006 --> 00:20:24,108 PATIENTS. 452 00:20:24,108 --> 00:20:26,277 AS I'M WAITING TO SPEAK TO THE 453 00:20:26,277 --> 00:20:27,478 GENTLEMAN USING EYE GAZE, I LOOK 454 00:20:27,478 --> 00:20:29,013 OVER AND MONICA BERTAGNOLLI IS 455 00:20:29,013 --> 00:20:30,214 STANDING THERE TALKING TO HIM, 456 00:20:30,214 --> 00:20:32,984 AND SHE IS OF COURSE OUR NEW NIH 457 00:20:32,984 --> 00:20:34,485 DIRECTOR AND THIS IS ACTUALLY ON 458 00:20:34,485 --> 00:20:36,154 THE DAY SHE GOT CONFIRMED. 459 00:20:36,154 --> 00:20:39,624 IT WAS A COUPLE HOURS BEFORE, SO 460 00:20:39,624 --> 00:20:42,727 SHE IS VERY AWARE OF THE 461 00:20:42,727 --> 00:20:44,028 IMPORTANCE OF REHAB, GREAT TO 462 00:20:44,028 --> 00:20:47,632 MEET HER AND SAY HI, ALTHOUGH 463 00:20:47,632 --> 00:20:49,934 SHE WAS PRETTY BUSY THAT DAY. 464 00:20:49,934 --> 00:20:51,803 YEAH, SO THAT WAS -- I JUST 465 00:20:51,803 --> 00:20:54,105 WANTED TO SHARE HOW EXCITING I 466 00:20:54,105 --> 00:20:58,676 THOUGHT THAT ALL WAS. 467 00:20:58,676 --> 00:20:59,143 OKAY. 468 00:20:59,143 --> 00:21:03,514 I THINK YOU KNOW THAT WE VALUE 469 00:21:03,514 --> 00:21:05,016 COLLABORATIONS, AND THE WAY WE 470 00:21:05,016 --> 00:21:09,420 ARE ABLE TO WORK WITH OTHERS AT 471 00:21:09,420 --> 00:21:09,954 NIH. 472 00:21:09,954 --> 00:21:12,790 SO, I WANTED TO ACKNOWLEDGE A 473 00:21:12,790 --> 00:21:17,495 LOT OF WORK NINDS HAS BEEN DOING 474 00:21:17,495 --> 00:21:19,697 IN DIGITAL ENDPOINTS AND DIGITAL 475 00:21:19,697 --> 00:21:20,264 HEALTH TECHNOLOGIES. 476 00:21:20,264 --> 00:21:23,835 THEY HAD A SERIES OF WORKSHOPS, 477 00:21:23,835 --> 00:21:26,237 THAT MIDDLE ONE ON SEPTEMBER 29 478 00:21:26,237 --> 00:21:28,239 I THINK IS OF PARTICULAR 479 00:21:28,239 --> 00:21:29,073 INTEREST TO THIS GROUP. 480 00:21:29,073 --> 00:21:36,881 IF I HAVE THAT RIGHT IN MY HEAD, 481 00:21:36,881 --> 00:21:37,748 THE (INDISCERNIBLE) FUNCTION, 482 00:21:37,748 --> 00:21:39,483 AND WHEN I THINK ABOUT WHAT THE 483 00:21:39,483 --> 00:21:42,119 FUTURE OF CLINICAL TRIALS ARE 484 00:21:42,119 --> 00:21:43,087 GOING TO LOOK LIKE, I THINK THIS 485 00:21:43,087 --> 00:21:44,989 IS KIND OF THE BIGGEST IMPACT 486 00:21:44,989 --> 00:21:49,026 THAT WE'RE GOING TO HAVE. 487 00:21:49,026 --> 00:21:49,227 OKAY. 488 00:21:49,227 --> 00:21:50,895 SO, I WOULD ENCOURAGE PEOPLE TO 489 00:21:50,895 --> 00:21:54,131 GO BACK AND LOOK AT THOSE 490 00:21:54,131 --> 00:21:55,266 WORKSHOP RECORDINGS, IF THIS IS 491 00:21:55,266 --> 00:21:57,969 OF INTEREST TO YOU, LOOKING AT 492 00:21:57,969 --> 00:22:00,404 WHAT FDA IS ACCEPTING AS DIGITAL 493 00:22:00,404 --> 00:22:03,040 ENDPOINTS, WHICH I THINK IS 494 00:22:03,040 --> 00:22:06,944 VERY, VERY INTERESTING. 495 00:22:06,944 --> 00:22:10,248 THE SECOND WORKSHOP IS NEXT 496 00:22:10,248 --> 00:22:12,083 WEEK. 497 00:22:12,083 --> 00:22:14,285 AND THIS IS A COLLABORATION 498 00:22:14,285 --> 00:22:15,453 BETWEEN SEVERAL NIH INSTITUTES, 499 00:22:15,453 --> 00:22:19,357 BUT IT'S GOING TO BE -- IT IS 500 00:22:19,357 --> 00:22:21,092 BEING LED BY NCCIH, NATIONAL 501 00:22:21,092 --> 00:22:23,494 CENTER ON COMPLEMENTARY AND 502 00:22:23,494 --> 00:22:26,797 INTEGRATIVE HEALTH. 503 00:22:26,797 --> 00:22:29,267 AND WE'RE CO-SPONSORING IT. 504 00:22:29,267 --> 00:22:30,868 THIS WORKSHOP I THINK MANY OF 505 00:22:30,868 --> 00:22:32,904 YOU KNOW THAT FRANCIS COLLINS, 506 00:22:32,904 --> 00:22:34,872 THE FORMER NIH DIRECTOR, IS VERY 507 00:22:34,872 --> 00:22:36,307 INTERESTED IN MUSIC. 508 00:22:36,307 --> 00:22:39,810 SO THIS IS A COLLABORATION 509 00:22:39,810 --> 00:22:40,344 BETWEEN NIH, THE NATIONAL 510 00:22:40,344 --> 00:22:43,981 ENDOWMENT FOR THE ARTS, THE 511 00:22:43,981 --> 00:22:47,018 KENNEDY CENTER AND RENÉE FLEMING 512 00:22:47,018 --> 00:22:47,885 FOUNDATION. 513 00:22:47,885 --> 00:22:50,821 AND SHE IS CO-CHAIRING THIS WITH 514 00:22:50,821 --> 00:22:52,456 DR. COLLINS. 515 00:22:52,456 --> 00:22:54,458 SO WE ARE EXCITED THAT 516 00:22:54,458 --> 00:22:56,627 REHABILITATION IS REPRESENTED IN 517 00:22:56,627 --> 00:22:58,396 THIS WORKSHOP, SOME GRANTEES 518 00:22:58,396 --> 00:23:01,198 WILL BE THERE, AND WE ARE VERY 519 00:23:01,198 --> 00:23:08,773 EXCITED TO BE A PART OF THAT. 520 00:23:08,773 --> 00:23:08,973 OKAY. 521 00:23:08,973 --> 00:23:11,075 NEXT. 522 00:23:11,075 --> 00:23:12,944 I DON'T KNOW THAT WE TALK ABOUT 523 00:23:12,944 --> 00:23:15,546 OUR COLLABORATIONS WITH THE EYE 524 00:23:15,546 --> 00:23:16,981 INSTITUTE ALL THAT MUCH, BUT 525 00:23:16,981 --> 00:23:19,383 OVER THE LAST YEAR WE HAVE 526 00:23:19,383 --> 00:23:22,353 REALLY GROWN OUR CONNECTION WITH 527 00:23:22,353 --> 00:23:22,553 THEM. 528 00:23:22,553 --> 00:23:25,089 I WAS GOING TO SAY LAST WEEK BUT 529 00:23:25,089 --> 00:23:28,459 IT WAS LAST MONTH, WE HOSTED A 530 00:23:28,459 --> 00:23:33,597 WORKSHOP WITH THEM AS WELL AS 531 00:23:33,597 --> 00:23:36,767 NINDS, ON CORTICAL VISUAL 532 00:23:36,767 --> 00:23:38,235 IMPAIRMENT, CVI, SOMETHING THAT 533 00:23:38,235 --> 00:23:40,905 CAME THROUGH AS A MAJOR UNMET 534 00:23:40,905 --> 00:23:43,975 HEALTH NEED WHEN WE WERE WORKING 535 00:23:43,975 --> 00:23:47,278 WITH NINDS ON THE CEREBRAL PALSY 536 00:23:47,278 --> 00:23:50,114 RESEARCH PLAN SO WE HEARD THAT 537 00:23:50,114 --> 00:23:54,585 THIS WAS A REAL NEED. 538 00:23:54,585 --> 00:23:56,354 AND NEI DID STRATEGIC PLAN A 539 00:23:56,354 --> 00:23:58,122 COUPLE YEARS AGO AND IT REALLY 540 00:23:58,122 --> 00:24:02,159 CAME OUT AS A MAJOR ISSUE FOR 541 00:24:02,159 --> 00:24:02,793 THEM. 542 00:24:02,793 --> 00:24:08,065 SO THEY HAVE TAKEN IT UP, FIRST 543 00:24:08,065 --> 00:24:08,866 HOSTING THIS WORKSHOP, BUT THE 544 00:24:08,866 --> 00:24:11,135 PLAN AND THIS WAS KIND OF THE 545 00:24:11,135 --> 00:24:14,105 KICK START TO DEVELOP A 546 00:24:14,105 --> 00:24:17,575 REGISTRY, TO HELP UNDERSTAND HOW 547 00:24:17,575 --> 00:24:20,411 TO DIAGNOSE CVI AND EVENTUALLY 548 00:24:20,411 --> 00:24:23,180 LOOK AT TREATMENTS SO WE'LL BE 549 00:24:23,180 --> 00:24:28,419 HEARING MORE FROM THEM AND THEN 550 00:24:28,419 --> 00:24:31,789 IN OUR PUBLICATION YOU SEE A 551 00:24:31,789 --> 00:24:33,991 PICTURE OF VISION REHAB BEING A 552 00:24:33,991 --> 00:24:36,060 FOCUS OF THE NIH RESEARCH 553 00:24:36,060 --> 00:24:36,494 MATTERS. 554 00:24:36,494 --> 00:24:38,929 SO I JUST WANTED TO ACKNOWLEDGE 555 00:24:38,929 --> 00:24:43,667 THE GREAT WORK NEI AND 556 00:24:43,667 --> 00:24:44,835 PARTICULARLY SHERRY WIGGS, THE 557 00:24:44,835 --> 00:24:46,470 PROGRAM OFFICER WE WORK WITH 558 00:24:46,470 --> 00:24:52,610 THERE A LOT. 559 00:24:52,610 --> 00:24:53,477 OKAY. 560 00:24:53,477 --> 00:24:53,911 NEXT. 561 00:24:53,911 --> 00:24:55,980 WE'VE TALKED ABOUT THIS 562 00:24:55,980 --> 00:24:57,615 COLLABORATION WITH NIBIB A FEW 563 00:24:57,615 --> 00:25:02,887 TIMES, BUT THEY DID THIS 564 00:25:02,887 --> 00:25:03,754 WONDERFUL UNDERGRADUATE PRIZE 565 00:25:03,754 --> 00:25:07,258 COMPETITION AND A FEW YEARS AGO 566 00:25:07,258 --> 00:25:11,295 WE DECIDED TO SPONSOR REHAB AND 567 00:25:11,295 --> 00:25:12,096 ASSISTIVE TECHNOLOGIES PRIZE. 568 00:25:12,096 --> 00:25:16,233 ON THE RIGHT WE HAVE A PICTURE 569 00:25:16,233 --> 00:25:18,502 OF THE WINNING SUBMISSION FROM 570 00:25:18,502 --> 00:25:19,670 THE UNIVERSITY OF CALIFORNIA IN 571 00:25:19,670 --> 00:25:24,975 SAN DIEGO, AND THIS IS AN 572 00:25:24,975 --> 00:25:26,844 ADJUSTABLE PROSTHETIC SOCKET. 573 00:25:26,844 --> 00:25:30,114 YOU KNOW, 30 OR 40% OF THE 100+ 574 00:25:30,114 --> 00:25:31,649 APPLICATIONS THAT COME IN ARE 575 00:25:31,649 --> 00:25:35,152 RELATED TO REHAB AND ASSISTIVE 576 00:25:35,152 --> 00:25:36,987 TECHNOLOGY SO I'M HEARTENED THAT 577 00:25:36,987 --> 00:25:40,958 THERE'S A LOT OF INTEREST FROM 578 00:25:40,958 --> 00:25:42,693 THE NEXT GENERATION IN 579 00:25:42,693 --> 00:25:44,428 DEVELOPING THESE TYPES OF 580 00:25:44,428 --> 00:25:47,198 INTERVENTIONS AND TOOLS. 581 00:25:47,198 --> 00:25:50,468 SO CONGRATULATIONS TO THEM. 582 00:25:50,468 --> 00:25:52,103 AND WE MADE THESE AWARDS AT THE 583 00:25:52,103 --> 00:25:53,871 END OF THE FISCAL YEAR SO WE'LL 584 00:25:53,871 --> 00:25:55,606 PROBABLY BE STARTING THE NEXT 585 00:25:55,606 --> 00:25:58,242 ONE UP AGAIN, SO IF YOU GUYS 586 00:25:58,242 --> 00:25:59,777 HAVE UNDERGRADUATE TEAMS THAT 587 00:25:59,777 --> 00:26:01,612 MIGHT BE GOOD CANDIDATES, PLEASE 588 00:26:01,612 --> 00:26:04,348 THINK OF THIS. 589 00:26:04,348 --> 00:26:06,650 USUALLY AROUND JANUARY WE 590 00:26:06,650 --> 00:26:08,486 ANNOUNCE THE NEXT CALL FOR 591 00:26:08,486 --> 00:26:12,256 APPLICATIONS AND THEY ARE 592 00:26:12,256 --> 00:26:19,997 TYPICALLY DUE IN MAY. 593 00:26:19,997 --> 00:26:20,431 NEXT. 594 00:26:20,431 --> 00:26:22,500 SO, I'VE BEEN TALKING ABOUT 595 00:26:22,500 --> 00:26:24,802 COLLABORATIONS THAT WE'VE DONE 596 00:26:24,802 --> 00:26:26,203 WITH OTHER INSTITUTES AT NIH. 597 00:26:26,203 --> 00:26:27,972 AND NOW I WANT TO SHIFT TO TALK 598 00:26:27,972 --> 00:26:32,143 ABOUT ONE THAT WE'VE DONE WITH 599 00:26:32,143 --> 00:26:35,312 ANOTHER HHS AGENCY, THE CDC. 600 00:26:35,312 --> 00:26:38,916 FIVE OR SIX YEARS AGO WE STARTED 601 00:26:38,916 --> 00:26:41,752 COLLABORATING WITH THEM ON THE 602 00:26:41,752 --> 00:26:48,859 PREGNANCY RISK ASSESSMENT AND 603 00:26:48,859 --> 00:26:49,860 MONITORING SURVEY, PRAMS, 604 00:26:49,860 --> 00:26:51,162 SUPPORTING A SUPPLEMENT TO ASK 605 00:26:51,162 --> 00:26:51,929 ABOUT DISABILITY. 606 00:26:51,929 --> 00:26:53,697 WE HAVE THEM ADD THE DISABILITY 607 00:26:53,697 --> 00:26:54,765 QUESTIONS FROM THE WASHINGTON 608 00:26:54,765 --> 00:26:58,035 GROUP TO TRY TO LOOK AT THIS 609 00:26:58,035 --> 00:27:02,439 INTERSECTION BETWEEN, YOU KNOW, 610 00:27:02,439 --> 00:27:05,943 PEOPLE WHO HAVE BABIES AND THE 611 00:27:05,943 --> 00:27:06,911 INTERSECTION WITH DISABILITY 612 00:27:06,911 --> 00:27:07,244 STATUS. 613 00:27:07,244 --> 00:27:09,980 SO, THIS IS SOME DATA THAT THE 614 00:27:09,980 --> 00:27:12,650 GROUP IS ABLE TO PULL TOGETHER. 615 00:27:12,650 --> 00:27:16,353 IT WAS PRESENTED PREVIOUSLY AT 616 00:27:16,353 --> 00:27:17,788 THE CITY MATCH CONFERENCE IN 617 00:27:17,788 --> 00:27:18,088 SEPTEMBER. 618 00:27:18,088 --> 00:27:20,758 HERE IS AN EXAMPLE OF THE THINGS 619 00:27:20,758 --> 00:27:22,927 WE ASK ASK. 620 00:27:22,927 --> 00:27:25,663 WHAT WERE THE STRESSORS 621 00:27:25,663 --> 00:27:28,065 EXPERIENCED DURING THE COVID-19 622 00:27:28,065 --> 00:27:29,700 PANDEMIC AMONG -- AND CDC USES 623 00:27:29,700 --> 00:27:37,041 WOMEN, I'LL SAY PEOPLE WHO HAVE 624 00:27:37,041 --> 00:27:44,782 BABIES, THEIR DISABILITY 625 00:27:44,782 --> 00:27:46,917 STATUS, PEOPLE WITH LIVE BIRTH, 626 00:27:46,917 --> 00:27:48,519 COLLECTED DATA THE FOLLOWING 627 00:27:48,519 --> 00:27:51,388 YEAR, ABLE TO GET 14 628 00:27:51,388 --> 00:27:53,657 JURISDICTIONS I THINK ROUGHLY 629 00:27:53,657 --> 00:27:56,493 STATES THAT HAD BOTH THIS 630 00:27:56,493 --> 00:27:59,129 DISABILITY SUPPLEMENT AS WELL AS 631 00:27:59,129 --> 00:27:59,997 MATERNAL COVID-19 EXPERIENCE 632 00:27:59,997 --> 00:28:00,431 SUPPLEMENT. 633 00:28:00,431 --> 00:28:05,903 SO JUST TO SHOW A LITTLE BIT OF 634 00:28:05,903 --> 00:28:07,104 THE DATA, NEXT SLIDE, I DON'T 635 00:28:07,104 --> 00:28:09,607 THINK THIS IS SURPRISING TO FIND 636 00:28:09,607 --> 00:28:12,042 THAT PEOPLE WHO REPORTED HAVING 637 00:28:12,042 --> 00:28:15,012 SOME TYPE OF DISABILITY HAD MORE 638 00:28:15,012 --> 00:28:17,615 STRESSORS DURING THE COVID-19 639 00:28:17,615 --> 00:28:17,881 PANDEMIC. 640 00:28:17,881 --> 00:28:19,049 YOU KNOW, FROM ECONOMIC TO 641 00:28:19,049 --> 00:28:23,988 HOUSING TO CHILD CARE TO FOOD 642 00:28:23,988 --> 00:28:26,624 INSECURITY, WHICH IS 643 00:28:26,624 --> 00:28:33,597 PARTICULARLY HARD TO SEE, MENTAL 644 00:28:33,597 --> 00:28:36,567 HEALTH, AND PARTNER STRESSORS. 645 00:28:36,567 --> 00:28:38,969 AND THEN, NEXT SLIDE, SO NOT 646 00:28:38,969 --> 00:28:40,838 ONLY DID THEY -- WERE THEY MORE 647 00:28:40,838 --> 00:28:43,140 LIKELY TO REPORT A STRESSOR IN 648 00:28:43,140 --> 00:28:44,775 THESE INDIVIDUAL AREAS, BUT THEY 649 00:28:44,775 --> 00:28:48,279 WERE ALSO MORE LIKELY TO REPORT 650 00:28:48,279 --> 00:28:50,014 HAVING MULTIPLE STRESSORS, SO 651 00:28:50,014 --> 00:28:51,649 THEY -- YOU CAN SEE THEY WERE 652 00:28:51,649 --> 00:28:55,486 MORE LIKELY TO HAVE THREE, FOUR, 653 00:28:55,486 --> 00:28:57,354 FIVE STRESSORS, WHERE THE GROUP 654 00:28:57,354 --> 00:28:59,857 WITHOUT DISABILITY WERE ONLY 655 00:28:59,857 --> 00:29:03,027 REPORTING ZERO TO ONE OR TWO. 656 00:29:03,027 --> 00:29:04,995 SO, WE'RE ALSO LOOKING AT 657 00:29:04,995 --> 00:29:05,763 BREASTFEEDING AND SLEEP 658 00:29:05,763 --> 00:29:07,197 BEHAVIORS, THINGS LIKE THAT. 659 00:29:07,197 --> 00:29:10,134 BUT I FOUND THIS PARTICULARLY 660 00:29:10,134 --> 00:29:10,701 INTERESTING. 661 00:29:10,701 --> 00:29:12,303 AND GIVES US DIRECTIONS ON WHERE 662 00:29:12,303 --> 00:29:14,204 WE MIGHT WANT TO DO FUTURE 663 00:29:14,204 --> 00:29:18,275 RESEARCH, SO THIS IS REALLY 664 00:29:18,275 --> 00:29:19,443 GREAT FOR HYPOTHESIS 665 00:29:19,443 --> 00:29:20,044 DEVELOPMENT. 666 00:29:20,044 --> 00:29:21,879 OKAY. 667 00:29:21,879 --> 00:29:24,148 NEXT SLIDE. 668 00:29:24,148 --> 00:29:29,086 I'M GOING TO PAUSE HERE 669 00:29:29,086 --> 00:29:29,620 ACTUALLY. 670 00:29:29,620 --> 00:29:30,821 SORRY, SHENARD. 671 00:29:30,821 --> 00:29:32,823 DR. BIANCHI, ARE YOU ON? 672 00:29:32,823 --> 00:29:33,424 >> YES, I AM. 673 00:29:33,424 --> 00:29:35,893 >> OKAY. 674 00:29:35,893 --> 00:29:36,960 I'M SORRY. 675 00:29:36,960 --> 00:29:37,227 WE -- 676 00:29:37,227 --> 00:29:38,495 >> YES, YOU'RE NOT GOING 677 00:29:38,495 --> 00:29:40,064 ACCORDING TO THE SCHEDULE THAT I 678 00:29:40,064 --> 00:29:40,264 HAVE. 679 00:29:40,264 --> 00:29:43,300 >> WE WERE A LITTLE BIT FAST 680 00:29:43,300 --> 00:29:45,302 THIS MORNING SO I WANT TO BE 681 00:29:45,302 --> 00:29:46,937 RESPECTFUL OF YOUR TIME SO I CAN 682 00:29:46,937 --> 00:29:49,106 PAUSE HERE AND WE CAN DO YOUR 683 00:29:49,106 --> 00:29:51,108 PRESENTATION BECAUSE I KNOW YOUR 684 00:29:51,108 --> 00:29:51,875 SCHEDULE IS MUCH BUSIER. 685 00:29:51,875 --> 00:29:54,345 >> I WAS PLANNING TO HEAR YOUR 686 00:29:54,345 --> 00:29:55,579 PRESENTATION, SO WHY DON'T YOU 687 00:29:55,579 --> 00:29:57,748 FINISH AND THEN I'LL GO AFTER 688 00:29:57,748 --> 00:29:58,515 YOU. 689 00:29:58,515 --> 00:30:00,584 HOW DOES THAT SOUND? 690 00:30:00,584 --> 00:30:02,353 >> IF THAT WORKS FOR YOUR 691 00:30:02,353 --> 00:30:07,191 SCHEDULE WE'LL KEEP GOING. 692 00:30:07,191 --> 00:30:08,792 >> GREAT, THANK YOU. 693 00:30:08,792 --> 00:30:09,893 LET'S ACKNOWLEDGE, BEFORE I 694 00:30:09,893 --> 00:30:12,696 FORGET, THE I.T. SUPPORT IN THE 695 00:30:12,696 --> 00:30:17,468 ROOM WHO IS -- AND IN VIDEOCAST 696 00:30:17,468 --> 00:30:19,336 LAND, WHO ARE MAKING THIS LOOK 697 00:30:19,336 --> 00:30:22,506 SEAMLESS, SO THANK YOU. 698 00:30:22,506 --> 00:30:22,840 OKAY. 699 00:30:22,840 --> 00:30:28,445 LET'S TALK ABOUT SOME SCIENCE. 700 00:30:28,445 --> 00:30:33,250 SO, THE NEXT COUPLE SLIDES, WERE 701 00:30:33,250 --> 00:30:35,319 PUT TOGETHER BY THE BRAIN 702 00:30:35,319 --> 00:30:35,619 INITIATIVE. 703 00:30:35,619 --> 00:30:37,821 YOU KNOW THAT I'VE SPENT A FAIR 704 00:30:37,821 --> 00:30:44,061 AMOUNT OF TIME WORKING WITH THE 705 00:30:44,061 --> 00:30:47,664 BRAIN INITIATIVE INSTITUTES, 706 00:30:47,664 --> 00:30:51,835 LARGELY NINDS, BUT THERE ARE TEN 707 00:30:51,835 --> 00:30:56,340 OF US WORKING ON BRAIN. 708 00:30:56,340 --> 00:31:00,411 THIS PAPER CAME OUT OF MACHADO 709 00:31:00,411 --> 00:31:02,045 AND BAKER LABS LOOKING AT THE 710 00:31:02,045 --> 00:31:03,547 SAFETY AND FEASIBILITY OF DEEP 711 00:31:03,547 --> 00:31:08,051 BRAIN STIMULATION IN TH 712 00:31:08,051 --> 00:31:09,853 CEREBELLUM, COMBINED WITH 713 00:31:09,853 --> 00:31:14,191 TRADITIONAL REHABILITATION TO 714 00:31:14,191 --> 00:31:17,227 IMPROVE UPPER LIMB OUTCOMES 715 00:31:17,227 --> 00:31:18,228 FOLLOWING STROKE. 716 00:31:18,228 --> 00:31:21,732 ALL THE STUDIES I'M GOING TO BE 717 00:31:21,732 --> 00:31:26,203 SHOWING ARE FDA EARLY 718 00:31:26,203 --> 00:31:26,804 FEASIBILITY FIRST-IN-HUMANS. 719 00:31:26,804 --> 00:31:29,840 THE BRAIN INITIATIVE IS REALLY 720 00:31:29,840 --> 00:31:32,676 LOOKING TO UNDERSTAND THE 721 00:31:32,676 --> 00:31:35,279 CIRCUITRY, AND DE-RISK THESE 722 00:31:35,279 --> 00:31:36,947 TYPES OF INTERVENTIONS, SO THAT 723 00:31:36,947 --> 00:31:41,118 INDUSTRY CAN THEN PICK UP AND DO 724 00:31:41,118 --> 00:31:41,752 PIVOTAL TRIALS. 725 00:31:41,752 --> 00:31:43,720 SO I THINK THIS HAS SOME 726 00:31:43,720 --> 00:31:45,155 ANIMATION, SO LET'S SEE WHAT WE 727 00:31:45,155 --> 00:31:47,224 CAN DO HERE. 728 00:31:47,224 --> 00:31:47,424 OKAY. 729 00:31:47,424 --> 00:31:49,259 SO THAT YOU CAN'T SEE IT BUT THE 730 00:31:49,259 --> 00:31:50,527 BIG ORANGE CHUNK IN THE MIDDLE 731 00:31:50,527 --> 00:31:53,897 IS WHEN THEY ARE GETTING THE DBS 732 00:31:53,897 --> 00:31:56,300 WITH REHABILITATION, SO THE 733 00:31:56,300 --> 00:31:57,401 IMPORTANCE OF HAVING 734 00:31:57,401 --> 00:32:00,003 REHABILITATION COMBINED WITH THE 735 00:32:00,003 --> 00:32:01,738 NEUROMODULATION. 736 00:32:01,738 --> 00:32:04,641 THEY HAD 12 SUBJECTS, NINE OF 737 00:32:04,641 --> 00:32:05,175 WHOM HAD SIGNIFICANT 738 00:32:05,175 --> 00:32:07,678 IMPROVEMENTS, AND YOU CAN SEE 739 00:32:07,678 --> 00:32:08,579 THE INDIVIDUAL PATIENT DATA, 740 00:32:08,579 --> 00:32:10,113 WHICH IS SOMETHING THAT I REALLY 741 00:32:10,113 --> 00:32:12,749 LIKE ABOUT HOW THEY PRESENTED 742 00:32:12,749 --> 00:32:17,788 THIS PAPER, WHICH IS IN NATURE 743 00:32:17,788 --> 00:32:18,121 MEDICINE. 744 00:32:18,121 --> 00:32:19,957 YOU CAN SEE NOT EVERYBODY DID 745 00:32:19,957 --> 00:32:20,324 BETTER. 746 00:32:20,324 --> 00:32:21,625 THE MORE IMPAIRED PEOPLE TO 747 00:32:21,625 --> 00:32:25,095 START DID NOT SEE THE SAME GAINS 748 00:32:25,095 --> 00:32:28,065 AS THE MORE MODERATE IMPAIRMENT. 749 00:32:28,065 --> 00:32:29,399 NEXT SLIDE. 750 00:32:29,399 --> 00:32:31,468 AND THEN BECAUSE THIS IS "BRAIN" 751 00:32:31,468 --> 00:32:34,338 THEY WANTED TO SEE IF THEY COULD 752 00:32:34,338 --> 00:32:35,639 UNDERSTAND THE CIRCUITS AND AT 753 00:32:35,639 --> 00:32:40,477 LEAST TO START IT DOES LOOK LIKE 754 00:32:40,477 --> 00:32:43,313 THERE WERE CHANGES IN METABOLIC 755 00:32:43,313 --> 00:32:45,415 ACTIVITY TO GIVE SOME SUGGESTION 756 00:32:45,415 --> 00:32:45,749 OF MECHANISM. 757 00:32:45,749 --> 00:32:48,352 SO, AGAIN, THIS IS A SMALL 758 00:32:48,352 --> 00:32:51,722 NUMBER OF PATIENTS, BUT I THINK 759 00:32:51,722 --> 00:32:57,528 IT GIVES US SOME INTERESTING 760 00:32:57,528 --> 00:33:00,597 NEXT STEPS FOR CEREBELLAR DBS 761 00:33:00,597 --> 00:33:03,534 COMBINED WITH REHAB. 762 00:33:03,534 --> 00:33:04,635 NEXT SLIDE. 763 00:33:04,635 --> 00:33:10,674 HERE WE HAVE ANOTHER EXAMPLE OF 764 00:33:10,674 --> 00:33:12,209 SMALL NUMBER OF SUBJECTS. 765 00:33:12,209 --> 00:33:14,311 HERE WE HAD THREE PEOPLE WITH 766 00:33:14,311 --> 00:33:18,448 POST STROKE PAIN AS WELL AS ONE 767 00:33:18,448 --> 00:33:21,084 PERSON WITH PHANTOM LIMB PAIN, 768 00:33:21,084 --> 00:33:23,387 AND THE INVESTIGATORS HERE OUT 769 00:33:23,387 --> 00:33:25,055 OF UNIVERSITY OF PITTSBURGH I 770 00:33:25,055 --> 00:33:32,896 BELIEVE WERE LOOKING TO SEE IF 771 00:33:32,896 --> 00:33:34,231 THEY COULD FIND SIGNATURES OF 772 00:33:34,231 --> 00:33:38,702 PAIN THAT THEN COULD BE USED IN 773 00:33:38,702 --> 00:33:44,942 A CLOSED LOOP FASHION TO PROVIDE 774 00:33:44,942 --> 00:33:45,509 NEUROSTIMULATION. 775 00:33:45,509 --> 00:33:48,478 SO, IN THIS CASE -- SKIP TO THE 776 00:33:48,478 --> 00:33:58,889 NEXT SLIDE -- THEY ARE 777 00:34:01,191 --> 00:34:02,526 STIMULATING INTERIOR CINGULATE, 778 00:34:02,526 --> 00:34:05,395 ORBITALOFRONTAL CORTEX FOR MANY 779 00:34:05,395 --> 00:34:05,629 MONTHS. 780 00:34:05,629 --> 00:34:07,064 PAIN IS NOT CONSTANT AND YOU 781 00:34:07,064 --> 00:34:09,366 NEED TO SEE OVER TIME, SO 782 00:34:09,366 --> 00:34:11,535 THERE'S AN EXAMPLE OF PAIN 783 00:34:11,535 --> 00:34:13,837 SCORES FROM ONE SUBJECT, AND YOU 784 00:34:13,837 --> 00:34:20,277 CAN JUST SEE THE INCREDIBLE 785 00:34:20,277 --> 00:34:21,411 VARIABILITY AND GREAT THEY WERE 786 00:34:21,411 --> 00:34:23,280 ABLE TO DO LONG-TERM RECORDINGS, 787 00:34:23,280 --> 00:34:26,783 AND THEN IF YOU GO TO THE NEXT 788 00:34:26,783 --> 00:34:30,387 SLIDE, THEY DID FIND VARIABILITY 789 00:34:30,387 --> 00:34:31,121 ACROSS PATIENTS, BUT IT'S HARD 790 00:34:31,121 --> 00:34:40,897 TO SEE IN THE ROOM, BUT IN THE 791 00:34:40,897 --> 00:34:43,100 MIDDLE OF THAT INDIVIDUAL -- THE 792 00:34:43,100 --> 00:34:44,835 FOUR INDIVIDUAL PATIENTS ARE 793 00:34:44,835 --> 00:34:46,503 LISTED WITH THEIR OWN DISTINCT 794 00:34:46,503 --> 00:34:52,576 PAIN FEATURES BUT THEY ALSO 795 00:34:52,576 --> 00:34:53,710 HAVE COMMONALITY. 796 00:34:53,710 --> 00:34:56,546 IN THE RED THEY WERE COMMON TO 797 00:34:56,546 --> 00:34:56,713 ALL. 798 00:34:56,713 --> 00:35:00,817 THE HOPE IS THIS COULD BE USED 799 00:35:00,817 --> 00:35:03,320 AT BIOMARKER FOR CLOSED-LOOP DBS 800 00:35:03,320 --> 00:35:04,087 FOR PAIN MANAGEMENT. 801 00:35:04,087 --> 00:35:11,662 NEXT SLIDE. 802 00:35:11,662 --> 00:35:12,329 OKAY. 803 00:35:12,329 --> 00:35:15,799 AND THEN WE FUND WITH NATIONAL 804 00:35:15,799 --> 00:35:23,707 INSTITUTE ON BIOMEDICAL IMAGING 805 00:35:23,707 --> 00:35:24,408 AND BIOENGINEERING -- 806 00:35:24,408 --> 00:35:26,443 >> (INAUDIBLE). 807 00:35:26,443 --> 00:35:28,645 >> THANK YOU. 808 00:35:28,645 --> 00:35:30,380 NIBIB. 809 00:35:30,380 --> 00:35:31,948 WE CO-FUND WITH THEM, THE 810 00:35:31,948 --> 00:35:34,351 RESTORE AND MOBILIZE CENTERS OUT 811 00:35:34,351 --> 00:35:40,357 OF STANFORD, SCOTT IS THE P.I., 812 00:35:40,357 --> 00:35:42,659 AND THIS IS THEIR RECENT 813 00:35:42,659 --> 00:35:45,195 OPEN-TAP SOFTWARE, WHERE YOU CAN 814 00:35:45,195 --> 00:35:48,031 JUST TAKE A COUPLE CELL PHONES 815 00:35:48,031 --> 00:35:50,100 AND DO MOTION ANALYSIS DATA. 816 00:35:50,100 --> 00:35:52,402 IT'S A LITTLE BIT HARD TO SEE 817 00:35:52,402 --> 00:35:56,973 BUT THERE'S THE PERSON AND THEN 818 00:35:56,973 --> 00:35:58,308 THEIR AVATAR THE SOFTWARE IS 819 00:35:58,308 --> 00:36:00,711 ABLE TO PULL UP NEXT TO IT. 820 00:36:00,711 --> 00:36:04,114 WE DID A PRESS RELEASE WITH OUR 821 00:36:04,114 --> 00:36:05,082 COLLEAGUES FOR THAT. 822 00:36:05,082 --> 00:36:13,523 AND I THINK MY LAST ONE IS AN 823 00:36:13,523 --> 00:36:15,625 NIH RESEARCH MATTERS, A LAY 824 00:36:15,625 --> 00:36:18,161 PUBLICATION WE PUT OUT. 825 00:36:18,161 --> 00:36:20,564 AND HERE WE WERE ONE OF SEVERAL 826 00:36:20,564 --> 00:36:24,401 I.C.s THAT ARE SUPPORTING 827 00:36:24,401 --> 00:36:25,368 RESEARCH TO UNDERSTAND CTE. 828 00:36:25,368 --> 00:36:28,004 I THINK YOU KNOW THAT FOR A LONG 829 00:36:28,004 --> 00:36:31,274 TIME WE DID THE SUPPORT OF THE 830 00:36:31,274 --> 00:36:39,850 TECHNOLOGY TO MEASURE THE HEAD 831 00:36:39,850 --> 00:36:45,122 IMPACTS, SO THE CYMBAX GROUP, 832 00:36:45,122 --> 00:36:47,190 LICENSED TO RIDDELL TO PUT THAT 833 00:36:47,190 --> 00:36:49,159 IN HELMETS, A SUCCESS STORY OF 834 00:36:49,159 --> 00:36:53,530 OUR SMALL BUSINESS PROGRAM BUT 835 00:36:53,530 --> 00:36:54,831 LOOKING AT THE PATTERNS OF WHICH 836 00:36:54,831 --> 00:36:58,902 HITS SEEM TO BE CORRELATED WITH 837 00:36:58,902 --> 00:37:01,571 LATER CTE, AND I WANT TO 838 00:37:01,571 --> 00:37:03,373 ACKNOWLEDGE NINDS, OF COURSE THE 839 00:37:03,373 --> 00:37:05,776 LEAD INSTITUTE ON BRAIN INJURY 840 00:37:05,776 --> 00:37:09,079 AS WELL AS NIA WHO CONTRIBUTED 841 00:37:09,079 --> 00:37:10,280 TO THIS WORK. 842 00:37:10,280 --> 00:37:12,149 SO HOPEFULLY -- THE HOPE IS IF 843 00:37:12,149 --> 00:37:14,117 WE UNDERSTAND BETTER WHICH TYPES 844 00:37:14,117 --> 00:37:16,419 OF HITS ARE CONTRIBUTING TO CTE 845 00:37:16,419 --> 00:37:19,389 THEN WE CAN TRAIN PEOPLE TO NOT 846 00:37:19,389 --> 00:37:22,125 EXPERIENCE AS MANY OF THOSE. 847 00:37:22,125 --> 00:37:24,861 OKAY. 848 00:37:24,861 --> 00:37:29,466 THIS IS MY LAST TOPIC. 849 00:37:29,466 --> 00:37:31,568 AT OUR LAST MEETING WE HAD A 850 00:37:31,568 --> 00:37:32,969 GUEST FROM CENTERS FOR 851 00:37:32,969 --> 00:37:33,970 SCIENTIFIC REVIEW COME AND TALK 852 00:37:33,970 --> 00:37:36,239 TO YOU ALL ABOUT THE CHANGES 853 00:37:36,239 --> 00:37:40,744 THAT WERE BEING PROPOSED TO NIH 854 00:37:40,744 --> 00:37:41,411 REVIEW. 855 00:37:41,411 --> 00:37:44,481 WE CALL IT A SIMPLIFIED 856 00:37:44,481 --> 00:37:44,748 FRAMEWORK. 857 00:37:44,748 --> 00:37:46,817 WE'RE NOT CHANGING REVIEW. 858 00:37:46,817 --> 00:37:48,618 WE'RE SIMPLIFYING THE FRAMEWORK. 859 00:37:48,618 --> 00:37:51,054 AND THAT HAS GONE INTO EFFECT. 860 00:37:51,054 --> 00:37:52,889 SO WE CAME TO YOU AND SAID WE 861 00:37:52,889 --> 00:37:55,859 WERE PLANNING TO DO THIS, NOW WE 862 00:37:55,859 --> 00:37:59,596 HAVE ANNOUNCED THE 863 00:37:59,596 --> 00:38:00,463 IMPLEMENTATION DATE, A YEAR FROM 864 00:38:00,463 --> 00:38:01,198 JANUARY. 865 00:38:01,198 --> 00:38:03,300 SO IF YOU HAVE AN APPLICATION 866 00:38:03,300 --> 00:38:04,734 GOING IN THIS JANUARY, YOU DON'T 867 00:38:04,734 --> 00:38:06,269 HAVE TO WORRY ABOUT IT. 868 00:38:06,269 --> 00:38:09,005 BUT WE LIKE TO GIVE YOU GUYS 869 00:38:09,005 --> 00:38:11,107 TIME TO THINK THROUGH THESE 870 00:38:11,107 --> 00:38:12,843 CHANGES AND MAKE ADJUSTMENTS. 871 00:38:12,843 --> 00:38:15,445 THERE IS NOT ACTUALLY CHANGES TO 872 00:38:15,445 --> 00:38:16,646 THE APPLICATION. 873 00:38:16,646 --> 00:38:21,151 BUT YOU MAY WANT TO THINK ABOUT 874 00:38:21,151 --> 00:38:23,353 HOW YOU'RE GOING TO ADJUST 875 00:38:23,353 --> 00:38:24,654 PERHAPS HOW YOU WRITE AN 876 00:38:24,654 --> 00:38:27,624 APPLICATION BASED ON THE NEW 877 00:38:27,624 --> 00:38:27,991 FRAMEWORK. 878 00:38:27,991 --> 00:38:32,329 SO IF WE CAN GO TO THE NEXT 879 00:38:32,329 --> 00:38:32,629 SLIDE. 880 00:38:32,629 --> 00:38:35,198 SO, MANY OF YOU HERE HAVE 881 00:38:35,198 --> 00:38:38,768 PARTICIPATED IN PEER REVIEW, NOT 882 00:38:38,768 --> 00:38:40,503 WHILE YOU'RE ON THIS BOARD, AND 883 00:38:40,503 --> 00:38:42,205 WE'VE GOTTEN A LOT OF FEEDBACK 884 00:38:42,205 --> 00:38:43,940 THAT WE'RE ASKING PEOPLE TO DO 885 00:38:43,940 --> 00:38:46,142 TOO MUCH THAT DOESN'T FOCUS ON 886 00:38:46,142 --> 00:38:48,311 THE SCIENCE, WHICH IS WHAT YOU 887 00:38:48,311 --> 00:38:53,617 ALL SHOULD BE FOCUSING ON, TOO 888 00:38:53,617 --> 00:38:55,986 MANY ADMINISTRATIVE 889 00:38:55,986 --> 00:38:57,320 POLICY-RELATED THINGS. 890 00:38:57,320 --> 00:39:00,590 AND CSR DID SOME NICE WORK 891 00:39:00,590 --> 00:39:02,225 LOOKING AT WHAT HAPPENS IF WE 892 00:39:02,225 --> 00:39:04,427 GIVE THE SAME APPLICATION BUT 893 00:39:04,427 --> 00:39:05,395 IT'S ANONYMIZED. 894 00:39:05,395 --> 00:39:09,900 AND WHAT THEY FOUND IS THAT FOR 895 00:39:09,900 --> 00:39:11,668 MINORITIZED POPULATIONS IT 896 00:39:11,668 --> 00:39:15,472 DIDN'T CHANGE THEIR SCORE. 897 00:39:15,472 --> 00:39:17,340 BUT FOR WHITE APPLICANTS, THEY 898 00:39:17,340 --> 00:39:20,443 GOT A BOOST IF THEY WERE IN A 899 00:39:20,443 --> 00:39:23,914 MORE PRESTIGIOUS INSTITUTION. 900 00:39:23,914 --> 00:39:26,116 SO, THAT'S NOT GOING TO GET US 901 00:39:26,116 --> 00:39:28,418 THE BEST SCIENCE WHICH IS WHAT 902 00:39:28,418 --> 00:39:32,422 WE NEED SO WE'RE TRYING TO 903 00:39:32,422 --> 00:39:35,425 REDUCE THAT BIAS BY NO LONGER 904 00:39:35,425 --> 00:39:39,129 HAVING THE INVESTIGATOR AND THE 905 00:39:39,129 --> 00:39:40,196 ENVIRONMENT AS SCORED CRITERIA. 906 00:39:40,196 --> 00:39:43,600 SO IF YOU COULD GO TO THE NEXT 907 00:39:43,600 --> 00:39:50,073 SLIDE. 908 00:39:50,073 --> 00:39:53,777 SO, WE STILL HAVE OUR FIVE 909 00:39:53,777 --> 00:39:55,178 REVIEW CITE, LEGISLATED SO THOSE 910 00:39:55,178 --> 00:39:56,846 ARE NOT CHANGING, BUT WE'RE 911 00:39:56,846 --> 00:39:59,349 GROUPING THEM INTO THREE 912 00:39:59,349 --> 00:39:59,816 FACTORS. 913 00:39:59,816 --> 00:40:01,885 AND THEY WILL NOT ALL GET 914 00:40:01,885 --> 00:40:05,488 CRITERIA SCORES LIKE THEY DO 915 00:40:05,488 --> 00:40:05,889 NOW. 916 00:40:05,889 --> 00:40:08,491 INVESTIGATOR AND ENVIRONMENT 917 00:40:08,491 --> 00:40:10,660 WILL ONLY GET ACCEPTABLE OR -- 918 00:40:10,660 --> 00:40:15,031 SUFFICIENT OR INSUFFICIENT. 919 00:40:15,031 --> 00:40:17,667 WE'VE ALSO MOVED WHERE SOME 920 00:40:17,667 --> 00:40:19,803 HUMAN SUBJECTS WORK IS GOING TO 921 00:40:19,803 --> 00:40:24,240 BE EVALUATED, SO PREVIOUSLY WE 922 00:40:24,240 --> 00:40:26,743 HAD INCLUSION CRITERIA, STUDY 923 00:40:26,743 --> 00:40:28,712 TIMELINES, AS SEPARATE IN THE 924 00:40:28,712 --> 00:40:30,814 HUMAN SUBJECT SECTION, BUT FELT 925 00:40:30,814 --> 00:40:32,215 THAT WAS MORE ABOUT APPROACH AND 926 00:40:32,215 --> 00:40:34,017 WE REALLY NEEDED TO MOVE THAT 927 00:40:34,017 --> 00:40:36,920 INTO THE APPROACH DISCUSSION. 928 00:40:36,920 --> 00:40:39,089 AND WE PULLED SOME THINGS THAT 929 00:40:39,089 --> 00:40:41,858 REVIEWERS DIDN'T HAVE TO DO 930 00:40:41,858 --> 00:40:42,425 THAT. 931 00:40:42,425 --> 00:40:46,262 THESE WERE THINGS THAT NIH STAFF 932 00:40:46,262 --> 00:40:47,030 COULD REVIEW. 933 00:40:47,030 --> 00:40:52,168 AND, AGAIN, THE HOPE HERE IS 934 00:40:52,168 --> 00:40:54,037 THAT THIS WILL FACILITATE THE 935 00:40:54,037 --> 00:40:55,205 OVERARCHING GOAL OF PEER REVIEW 936 00:40:55,205 --> 00:40:58,408 TO GET THE BEST SCIENCE. 937 00:40:58,408 --> 00:40:58,875 YEAH, MICHELLE? 938 00:40:58,875 --> 00:40:59,709 >> QUICK QUESTION. 939 00:40:59,709 --> 00:41:01,344 WITH ALL THESE CHANGES DOES THAT 940 00:41:01,344 --> 00:41:03,413 MEAN THAT THE AMOUNT OF WORK 941 00:41:03,413 --> 00:41:04,948 THAT GOES INTO DESCRIBING THE 942 00:41:04,948 --> 00:41:07,384 INVESTIGATOR AND THE ENVIRONMENT 943 00:41:07,384 --> 00:41:09,352 HAS DECREASED? 944 00:41:09,352 --> 00:41:15,125 WE STILL HAVE TO DO -- DOES THAT 945 00:41:15,125 --> 00:41:16,960 GO AWAY? 946 00:41:16,960 --> 00:41:18,895 >> SO, NO, THE APPLICATION IS 947 00:41:18,895 --> 00:41:19,529 NOT CHANGING. 948 00:41:19,529 --> 00:41:21,498 BUT WE'RE HOPING THAT THE 949 00:41:21,498 --> 00:41:24,801 APPROPRIATE AMOUNT OF WEIGHT IS 950 00:41:24,801 --> 00:41:28,405 PUT ON THOSE CATEGORIES AS 951 00:41:28,405 --> 00:41:29,105 OPPOSED TO PERHAPS -- 952 00:41:29,105 --> 00:41:32,142 >> I THINK THE PLAN WAS TO KEEP 953 00:41:32,142 --> 00:41:33,777 IT FOCUSED ON SIGNIFICANCE AND 954 00:41:33,777 --> 00:41:37,614 POTENTIAL IMPACT AND NOT GET TOO 955 00:41:37,614 --> 00:41:41,584 BOGGED DOWN IN ACADEMIC ELEGANCE 956 00:41:41,584 --> 00:41:42,485 OR APPROACH, ESPECIALLY AS WE 957 00:41:42,485 --> 00:41:47,257 GET INTO THESE TIMES OF 958 00:41:47,257 --> 00:41:48,458 INCREASINGLY STRESSFUL PAYLINES. 959 00:41:48,458 --> 00:41:49,859 THERE'S A TENDENCY OF PEER 960 00:41:49,859 --> 00:41:53,263 REVIEW TO SOMETIMES GET TOO 961 00:41:53,263 --> 00:41:54,998 FOCUSED ON ONCE THEY ALREADY 962 00:41:54,998 --> 00:41:56,433 RATE SOMETHING AS IMPORTANT THEY 963 00:41:56,433 --> 00:41:58,735 GET TOO FOCUSED ON WHETHER IT'S 964 00:41:58,735 --> 00:42:01,137 POSSIBLE TO DO IT, AND 965 00:42:01,137 --> 00:42:02,772 ESPECIALLY FOR APPLICATIONS THAT 966 00:42:02,772 --> 00:42:03,673 ARE PARTICULARLY INNOVATIVE THEY 967 00:42:03,673 --> 00:42:05,742 SUFFER AND WE'RE ALSO TRYING TO 968 00:42:05,742 --> 00:42:08,912 PROMOTE MORE AS THERESA SAID 969 00:42:08,912 --> 00:42:10,113 GEOGRAPHICAL DIVERSITY, MORE 970 00:42:10,113 --> 00:42:13,183 DIVERSITY OF IDEAS, AND ALSO 971 00:42:13,183 --> 00:42:14,951 MORE TRANSPARENCY IN THE REVIEW 972 00:42:14,951 --> 00:42:15,185 PROCESS. 973 00:42:15,185 --> 00:42:16,820 AND SO WE'RE JUST TRYING TO 974 00:42:16,820 --> 00:42:19,589 RESET SOME OF THESE GOALS TO 975 00:42:19,589 --> 00:42:22,425 KEEP -- TO KEEP YOU GUYS, PEER 976 00:42:22,425 --> 00:42:25,495 REVIEWERS, FOCUSED ON THE REAL 977 00:42:25,495 --> 00:42:29,732 GOALS OF PEER REVIEW. 978 00:42:29,732 --> 00:42:31,201 >> THANK YOU, RALPH. 979 00:42:31,201 --> 00:42:34,437 NEXT SLIDE. 980 00:42:34,437 --> 00:42:37,173 SO, WHAT ARE THOSE SPECIFIC 981 00:42:37,173 --> 00:42:37,507 FACTORS? 982 00:42:37,507 --> 00:42:39,342 SO FACTOR ONE IS THE IMPORTANCE 983 00:42:39,342 --> 00:42:42,645 OF THE RESEARCH AND THAT'S WHERE 984 00:42:42,645 --> 00:42:44,414 WE'RE PUTTING SIGNIFICANCE IN 985 00:42:44,414 --> 00:42:44,714 INNOVATION. 986 00:42:44,714 --> 00:42:46,916 SO YOU CAN THINK OF THIS AS 987 00:42:46,916 --> 00:42:53,356 SHOULD IT BE DONE, LIKE IS THIS 988 00:42:53,356 --> 00:42:53,623 IMPORTANT. 989 00:42:53,623 --> 00:42:55,358 FACTOR TWO IS WE'RE LOOKING FOR 990 00:42:55,358 --> 00:43:00,029 RIGOR AND FEASIBILITY SO THIS IS 991 00:43:00,029 --> 00:43:00,663 OUR APPROACH. 992 00:43:00,663 --> 00:43:02,799 AND THIS IS -- YOU KNOW, CAN IT 993 00:43:02,799 --> 00:43:04,100 BE DONE? 994 00:43:04,100 --> 00:43:07,737 AND THEN OUR FINAL FACTOR IS 995 00:43:07,737 --> 00:43:10,773 EXPERTISE AND RESOURCES, WHERE 996 00:43:10,773 --> 00:43:11,975 WE HAVE INVESTIGATOR AND 997 00:43:11,975 --> 00:43:13,743 ENVIRONMENT AND YOU CAN THINK OF 998 00:43:13,743 --> 00:43:16,379 THIS AS WILL IT BE BE DONE, YOU 999 00:43:16,379 --> 00:43:18,448 KNOW, DO THEY HAVE THE EXPERTISE 1000 00:43:18,448 --> 00:43:21,518 TO COMPLETE WHAT THEY HAVE 1001 00:43:21,518 --> 00:43:22,051 PROPOSED? 1002 00:43:22,051 --> 00:43:25,889 AND THE FIRST TWO ARE SCORED AS 1003 00:43:25,889 --> 00:43:29,159 YOU'RE USED TO 1-9, AND THAT 1004 00:43:29,159 --> 00:43:30,894 THIRD ONE IS EITHER SUFFICIENT 1005 00:43:30,894 --> 00:43:38,835 OR INSUFFICIENT. 1006 00:43:38,835 --> 00:43:39,169 OKAY. 1007 00:43:39,169 --> 00:43:40,970 APPLICATIONS SUBMITTED AFTER 1008 00:43:40,970 --> 00:43:47,377 JANUARY 25, 2025. 1009 00:43:47,377 --> 00:43:48,244 LAST SLIDE ON THIS. 1010 00:43:48,244 --> 00:43:50,513 WE GET TO THE END, YOU THINK YOU 1011 00:43:50,513 --> 00:43:52,282 FINISHED DOING YOUR REVIEW AND 1012 00:43:52,282 --> 00:43:56,419 YOU REALIZE THERE'S EXTRA 1013 00:43:56,419 --> 00:43:58,521 CRITERIA YOU NEED TO LOOK AT, IS 1014 00:43:58,521 --> 00:44:00,390 THERE A FOREIGN COMPONENT, 1015 00:44:00,390 --> 00:44:01,824 SELECT AGENTS, RESOURCE SHARING 1016 00:44:01,824 --> 00:44:03,459 PLANS, WHICH IS DIFFERENT THAN 1017 00:44:03,459 --> 00:44:06,095 DATA MANAGEMENT AND SHARING 1018 00:44:06,095 --> 00:44:06,496 PLANS. 1019 00:44:06,496 --> 00:44:08,298 THESE ARE RESOURCE SHARING 1020 00:44:08,298 --> 00:44:08,698 PLANS. 1021 00:44:08,698 --> 00:44:10,033 BUDGET, ET CETERA. 1022 00:44:10,033 --> 00:44:11,901 SO, WE HAVE PULLED SEVERAL OF 1023 00:44:11,901 --> 00:44:15,605 THOSE OFF OF THE REVIEWERS TO 1024 00:44:15,605 --> 00:44:17,807 TO-DO LIST SO YOU'LL NO LONGER 1025 00:44:17,807 --> 00:44:20,643 NEED TO COMMENT ABOUT, YOU KNOW, 1026 00:44:20,643 --> 00:44:23,379 RESOURCE SHARING PLANS AS BEING 1027 00:44:23,379 --> 00:44:25,114 SUFFICIENT OR NOT. 1028 00:44:25,114 --> 00:44:26,349 EVALUATING WHETHER FOREIGN 1029 00:44:26,349 --> 00:44:29,719 COMPONENT IS NECESSARY, ET 1030 00:44:29,719 --> 00:44:30,753 CETERA. 1031 00:44:30,753 --> 00:44:32,388 SO WITH THAT I WILL PAUSE AND 1032 00:44:32,388 --> 00:44:37,327 TAKE QUESTIONS. 1033 00:44:37,327 --> 00:44:39,896 >> THANK YOU, THERESA. 1034 00:44:39,896 --> 00:44:41,864 VERY, VERY RICH SURVEY OF ALL 1035 00:44:41,864 --> 00:44:44,601 THAT'S GOING ON. 1036 00:44:44,601 --> 00:44:47,003 QUESTIONS, EITHER ONLINE OR HERE 1037 00:44:47,003 --> 00:44:51,174 IN THE ROOM? 1038 00:44:51,174 --> 00:44:51,441 MICHELLE? 1039 00:44:51,441 --> 00:44:54,444 >> I WAS PARTICULARLY INTERESTED 1040 00:44:54,444 --> 00:44:57,080 IN THE WHOLE -- SORRY, I WAS 1041 00:44:57,080 --> 00:44:59,048 PARTICULARLY INTERESTED IN THE 1042 00:44:59,048 --> 00:45:00,350 WHOLE CEREBRAL VISUAL IMPAIRMENT 1043 00:45:00,350 --> 00:45:02,785 IDEA THAT YOU TALKED ABOUT. 1044 00:45:02,785 --> 00:45:05,388 SO DOES THAT MEAN WILL THERE BE 1045 00:45:05,388 --> 00:45:07,023 AN RFA THAT COMES OUT IN TERMS 1046 00:45:07,023 --> 00:45:09,659 OF LOOKING AT THAT AND MAYBE, 1047 00:45:09,659 --> 00:45:11,628 YOU KNOW, A CALL FOR PEOPLE TO 1048 00:45:11,628 --> 00:45:17,600 ACTIVELY DO MORE IN THAT AREA? 1049 00:45:17,600 --> 00:45:20,837 >> YEAH, SO NEI IS DOING A 1050 00:45:20,837 --> 00:45:21,204 REGISTRY. 1051 00:45:21,204 --> 00:45:22,805 BUT THERE ARE LOTS OF WAYS YOU 1052 00:45:22,805 --> 00:45:23,539 CAN DO REGISTRIES. 1053 00:45:23,539 --> 00:45:24,674 THEY ARE ACTUALLY GOING TO OWN 1054 00:45:24,674 --> 00:45:28,144 THE DATA SO THEY HAVE SOMETHING 1055 00:45:28,144 --> 00:45:30,780 CALLED -- I'M LOOKING AT 1056 00:45:30,780 --> 00:45:35,385 DOLPHIN. 1057 00:45:35,385 --> 00:45:38,421 I-GENE, IS THAT THE CURRENT 1058 00:45:38,421 --> 00:45:39,088 REGISTRY? 1059 00:45:39,088 --> 00:45:42,825 YES, ALSO A BACKBONE LOOKING AT 1060 00:45:42,825 --> 00:45:44,627 GENETIC DISORDERS. 1061 00:45:44,627 --> 00:45:47,830 THE INTERNAL GROUP IS FAMILIAR 1062 00:45:47,830 --> 00:45:49,532 WITH FITBIR, HOW CAN THEY GET 1063 00:45:49,532 --> 00:45:56,406 THE NEW REGISTRY TO WORK WITH 1064 00:45:56,406 --> 00:45:56,606 THAT. 1065 00:45:56,606 --> 00:45:58,274 >> A FEW OTHER POINTS ABOUT 1066 00:45:58,274 --> 00:46:00,243 THAT, IT'S AN EXTENSION FOR US 1067 00:46:00,243 --> 00:46:01,744 TO GET INTO SENSORY IMPAIRMENTS 1068 00:46:01,744 --> 00:46:04,280 AND HOW THAT RELATES TO PHYSICAL 1069 00:46:04,280 --> 00:46:06,015 DISABILITIES, AND IT'S A GREAT 1070 00:46:06,015 --> 00:46:07,784 CHANCE TO COLLABORATE WITH NEI 1071 00:46:07,784 --> 00:46:09,519 AND OTHER PARTS OF NIH. 1072 00:46:09,519 --> 00:46:11,487 THERE'S A LOT OF SIMILARITIES TO 1073 00:46:11,487 --> 00:46:13,256 WHAT WE KNOW ABOUT CEREBRAL 1074 00:46:13,256 --> 00:46:15,758 PALSY, IT'S AN UMBRELLA OF 1075 00:46:15,758 --> 00:46:19,595 CONDITIONS THAT SOMEHOW AFFECT 1076 00:46:19,595 --> 00:46:24,834 HOW KIDS USE THEIR EYES, THE 1077 00:46:24,834 --> 00:46:26,169 WHOLE SENSORY INPUT. 1078 00:46:26,169 --> 00:46:30,440 AND EARLY DIAGNOSIS IS CRITICAL, 1079 00:46:30,440 --> 00:46:31,207 TREATMENT, PLASTICITY, SOME 1080 00:46:31,207 --> 00:46:32,075 CLASSICAL ISSUES. 1081 00:46:32,075 --> 00:46:34,143 THESE KIDS ARE GETTING GROSSLY 1082 00:46:34,143 --> 00:46:36,012 UNDERDIAGNOSED. 1083 00:46:36,012 --> 00:46:38,748 SO IT WAS A REALLY -- IT HAS 1084 00:46:38,748 --> 00:46:40,717 REAL INTEREST TO US AND SOME OF 1085 00:46:40,717 --> 00:46:41,684 OUR POPULATIONS, TREMENDOUS 1086 00:46:41,684 --> 00:46:43,986 OVERLAP IN SOME PEOPLE WITH 1087 00:46:43,986 --> 00:46:46,422 PHYSICAL DISABILITIES ALSO HAVE 1088 00:46:46,422 --> 00:46:46,889 THESE SENSORY ISSUES. 1089 00:46:46,889 --> 00:46:49,125 AND SO THEY HAVE HAD A LOT OF 1090 00:46:49,125 --> 00:46:53,863 RESONANCE FOR WHAT WE'RE TRYING 1091 00:46:53,863 --> 00:46:54,497 TO SUPPORT AS WELL. 1092 00:46:54,497 --> 00:46:57,800 >> THEY ARE WORKING ON PUTTING 1093 00:46:57,800 --> 00:47:01,637 TOGETHER A STEERING COMMITTEE TO 1094 00:47:01,637 --> 00:47:03,606 STAND THIS UP, IT'S GLOWING TO 1095 00:47:03,606 --> 00:47:14,083 BE MORE DIRECTED FROM NEI ON 1096 00:47:14,317 --> 00:47:14,450 THIS. 1097 00:47:14,450 --> 00:47:20,256 >> GOING BACK TO NEW SCORING 1098 00:47:20,256 --> 00:47:24,427 CRITERIA, THESE ARE EASY TO SAY 1099 00:47:24,427 --> 00:47:27,330 IT'S ALL BINARY, BUT -- 1100 00:47:27,330 --> 00:47:30,433 >> SO, WE HAVE A LOT OF WORK DO 1101 00:47:30,433 --> 00:47:32,668 IN 24 TO GET THIS LAUNCHED. 1102 00:47:32,668 --> 00:47:36,239 EVERY NOFO HAS TO BE REISSUED, 1103 00:47:36,239 --> 00:47:40,076 TO REFLECT THE NEW REVIEW 1104 00:47:40,076 --> 00:47:40,410 CRITERIA. 1105 00:47:40,410 --> 00:47:42,378 THERE'S TRAINING THAT CSR IS 1106 00:47:42,378 --> 00:47:44,013 ROLLING OUT, SO THAT'S WHY WE'D 1107 00:47:44,013 --> 00:47:48,584 LIKE TO GIVE OURS SELVES TIME 1108 00:47:48,584 --> 00:47:49,919 BECAUSE IT'S GOING TO TAKE A 1109 00:47:49,919 --> 00:47:52,221 WHILE TO GET THIS INGRAINED, 1110 00:47:52,221 --> 00:47:52,388 YES. 1111 00:47:52,388 --> 00:47:58,661 >> YOU THINK IT'S GOING TO BE 1112 00:47:58,661 --> 00:47:59,862 VIRTUAL OR AT MEETINGS. 1113 00:47:59,862 --> 00:48:01,931 >> I DON'T WANT TO MISSPEAK. 1114 00:48:01,931 --> 00:48:03,699 WE CAN HAVE CSR COME BACK IN MAY 1115 00:48:03,699 --> 00:48:05,902 IF THAT WOULD BE HELPFUL TO TALK 1116 00:48:05,902 --> 00:48:07,737 TO YOU ABOUT HOW THEY ARE 1117 00:48:07,737 --> 00:48:13,242 IMPLEMENTING IT, SO KEEP THAT IN 1118 00:48:13,242 --> 00:48:15,111 MIND FOR IDEAS FOR THE NEXT 1119 00:48:15,111 --> 00:48:15,344 MEETING. 1120 00:48:15,344 --> 00:48:16,546 MOST OF OUR TRAINING HAPPENS 1121 00:48:16,546 --> 00:48:17,780 BEFORE THE MEETING. 1122 00:48:17,780 --> 00:48:19,715 IT'S TOO LATE TO DO TRAINING AT 1123 00:48:19,715 --> 00:48:20,450 THE MEETING. 1124 00:48:20,450 --> 00:48:24,287 WE KNOW THAT DOESN'T WORK. 1125 00:48:24,287 --> 00:48:26,355 SO, YEAH, IT WILL BE BEFORE, I'M 1126 00:48:26,355 --> 00:48:27,356 QUITE SURE. 1127 00:48:27,356 --> 00:48:30,526 THEY TOOK DOWN A LOT OF TRAINING 1128 00:48:30,526 --> 00:48:32,728 VIDEOS FOR THE INFORMATION ABOUT 1129 00:48:32,728 --> 00:48:40,703 REVIEW FOR THE PUBLIC WHILE THEY 1130 00:48:40,703 --> 00:48:42,338 ARE MAKING THIS CHANGE. 1131 00:48:42,338 --> 00:48:45,174 >> THIS IDEA TRYING TO PROMOTE 1132 00:48:45,174 --> 00:48:47,710 IMPACT SIGNIFICANCE, TRYING TO 1133 00:48:47,710 --> 00:48:48,444 PROMOTE GEOGRAPHIC DIVERSITY, 1134 00:48:48,444 --> 00:48:49,812 IT'S GOING TO HAVE IMPLICATIONS 1135 00:48:49,812 --> 00:48:51,013 FOR TRAINING AND CAREER 1136 00:48:51,013 --> 00:48:56,018 DEVELOPMENT THAT WE SHOULD 1137 00:48:56,018 --> 00:48:59,422 REASSESS, TO HAVE A WIDER 1138 00:48:59,422 --> 00:49:00,623 DISTRIBUTION HOW WE TRAIN PEOPLE 1139 00:49:00,623 --> 00:49:02,458 AND BRING PEOPLE UP BECAUSE IT'S 1140 00:49:02,458 --> 00:49:06,629 IMPORTANT WE HAVE THESE THESE 1141 00:49:06,629 --> 00:49:10,132 MORE DIVERSE IDEAS, DON'T JUST 1142 00:49:10,132 --> 00:49:12,235 HAVE A FEW ELITE, PERHAPS 1143 00:49:12,235 --> 00:49:15,404 CONNECTING WITH OUR DISCUSSION 1144 00:49:15,404 --> 00:49:20,877 LATER ON ABOUT TRAINING AND 1145 00:49:20,877 --> 00:49:21,444 CAREER DEVELOPMENT. 1146 00:49:21,444 --> 00:49:23,613 >> I CAN IMAGINE IF THERE'S A 1147 00:49:23,613 --> 00:49:24,914 LARGE DISCUSSION AROUND THE 1148 00:49:24,914 --> 00:49:26,115 ENVIRONMENT AT STUDY SECTION 1149 00:49:26,115 --> 00:49:27,884 THAT'S GOING TO INFLUENCE SCORES 1150 00:49:27,884 --> 00:49:30,052 SO DOES THAT MEAN BECAUSE 1151 00:49:30,052 --> 00:49:32,355 ENVIRONMENT IS YES OR NO, DOES 1152 00:49:32,355 --> 00:49:35,424 THAT MEAN THE DISCUSSION AROUND 1153 00:49:35,424 --> 00:49:37,159 THE RESOURCES AND CAPABILITY, 1154 00:49:37,159 --> 00:49:42,098 ALL THAT STUFF ACTUALLY 1155 00:49:42,098 --> 00:49:42,365 DECREASED? 1156 00:49:42,365 --> 00:49:45,067 >> IT STILL COMES UP, THEY HAVE 1157 00:49:45,067 --> 00:49:47,270 TO ACCESS PATIENT POPULATIONS 1158 00:49:47,270 --> 00:49:49,105 AND COME ACROSS THAT BUT NOT 1159 00:49:49,105 --> 00:49:50,540 AUTOMATICALLY GIVE A PASS FOR 1160 00:49:50,540 --> 00:49:51,607 LEAD INSTITUTIONS AND PICK ON 1161 00:49:51,607 --> 00:49:53,576 PLACES NOT QUITE THE TOP BECAUSE 1162 00:49:53,576 --> 00:50:03,986 WE JUST DON'T KNOW THEM. 1163 00:50:08,190 --> 00:50:08,658 >> OTHER QUESTIONS? 1164 00:50:08,658 --> 00:50:09,559 >> WE'LL CONTINUE DURING THE 1165 00:50:09,559 --> 00:50:09,759 DAY. 1166 00:50:09,759 --> 00:50:13,396 WE CAN GET MORE DISCUSSION ON 1167 00:50:13,396 --> 00:50:14,263 ALL THESE TOPICS. 1168 00:50:14,263 --> 00:50:16,032 BUT I'D LIKE TO GO AHEAD AND 1169 00:50:16,032 --> 00:50:22,705 MOVE ON TO DR. DIANA BIANCHI'S 1170 00:50:22,705 --> 00:50:23,072 PRESENTATION. 1171 00:50:23,072 --> 00:50:25,007 SHE'S DIRECTOR OF NICHD AND SHE 1172 00:50:25,007 --> 00:50:27,176 WILL GIVE HER REPORT TO THE 1173 00:50:27,176 --> 00:50:29,312 BOARD AND I ASSUME THAT THE 1174 00:50:29,312 --> 00:50:31,347 SLIDES WILL APPEAR. 1175 00:50:31,347 --> 00:50:35,384 >> THANK YOU. 1176 00:50:35,384 --> 00:50:38,120 YOU'RE AMAZING. 1177 00:50:38,120 --> 00:50:44,126 1178 00:50:44,126 --> 00:50:48,297 1179 00:50:48,297 --> 00:50:49,398 1180 00:50:49,398 --> 00:50:50,600 I'M ASSUMING SHENNARD HAS THE 1181 00:50:50,600 --> 00:50:51,334 SLIDES. 1182 00:50:51,334 --> 00:50:52,101 GREAT. 1183 00:50:52,101 --> 00:50:53,769 THANK YOU FOR ACCOMMODATING MY 1184 00:50:53,769 --> 00:50:54,103 SCHEDULE. 1185 00:50:54,103 --> 00:50:58,941 I'M ACTUALLY TRIPLE SCHEDULED, 1186 00:50:58,941 --> 00:51:00,242 JUMPING BACK AND FORTH BETWEEN 1187 00:51:00,242 --> 00:51:02,845 MEETINGS, IT'S A VERY BUSY TIME. 1188 00:51:02,845 --> 00:51:04,180 I REMEMBER FONDLY WHEN THINGS 1189 00:51:04,180 --> 00:51:05,915 STARTED TO SLOW DOWN DURING THE 1190 00:51:05,915 --> 00:51:06,916 HOLIDAYS. 1191 00:51:06,916 --> 00:51:12,288 THAT DOESN'T HAPPEN ANYMORE. 1192 00:51:12,288 --> 00:51:13,055 NEXT SLIDE PLEASE. 1193 00:51:13,055 --> 00:51:21,030 TODAY I'M GOING TO TALK ABOUT 1194 00:51:21,030 --> 00:51:22,565 THE NEW DIRECTOR, THERESA MAY 1195 00:51:22,565 --> 00:51:23,532 HAVE SOMETHING SAID EARLIER, 1196 00:51:23,532 --> 00:51:25,835 WE'LL TALK ABOUT THE BUDGET NOT 1197 00:51:25,835 --> 00:51:27,470 THAT THERE'S VERY MUCH TO SAY. 1198 00:51:27,470 --> 00:51:29,739 I'M GOING TO GIVE A PREVIEW OF 1199 00:51:29,739 --> 00:51:32,942 THE ADVISORY COMMITTEE TO THE 1200 00:51:32,942 --> 00:51:35,011 NIH DIRECTOR'S WORKING GROUP ON 1201 00:51:35,011 --> 00:51:36,779 DIVERSITY SUBGROUP ON 1202 00:51:36,779 --> 00:51:37,680 INDIVIDUALS WITH DISABILITIES, 1203 00:51:37,680 --> 00:51:39,515 AND THEN ALLISON IS GOING TO 1204 00:51:39,515 --> 00:51:41,817 SPEAK ABOUT THAT LATER ON IN THE 1205 00:51:41,817 --> 00:51:43,686 AFTERNOON IN MORE DETAIL. 1206 00:51:43,686 --> 00:51:46,522 TO GIVE A PREVIEW TO WHAT'S 1207 00:51:46,522 --> 00:51:48,157 GOING ON WITH NICHD STRATEGIC 1208 00:51:48,157 --> 00:51:51,460 PLAN PLANNING FOR THE NEXT YEAR, 1209 00:51:51,460 --> 00:51:53,963 AND I KNOW THERESA TALKED A LOT 1210 00:51:53,963 --> 00:51:55,731 ABOUT COLLABORATIONS, I'M GOING 1211 00:51:55,731 --> 00:51:59,869 TO TALK ABOUT OUTSIDE OF NIH, 1212 00:51:59,869 --> 00:52:02,171 IMPORTANT EXTRAMURAL 1213 00:52:02,171 --> 00:52:03,706 PARTNERSHIPS THAT REPRESENT AN 1214 00:52:03,706 --> 00:52:05,241 OPPORTUNITY FOR NEW PERSPECTIVES 1215 00:52:05,241 --> 00:52:06,208 AND ADDITIONAL FUNDING. 1216 00:52:06,208 --> 00:52:09,712 AND THEN I'LL FILL IN SOME OTHER 1217 00:52:09,712 --> 00:52:11,681 NIH LEADERSHIP UPDATES AND 1218 00:52:11,681 --> 00:52:12,415 HOPEFULLY LEAVE TIME FOR 1219 00:52:12,415 --> 00:52:13,649 QUESTIONS. 1220 00:52:13,649 --> 00:52:14,650 SO NEXT SLIDE PLEASE. 1221 00:52:14,650 --> 00:52:17,820 NEXT SLIDE. 1222 00:52:17,820 --> 00:52:19,221 SO, DR. MONICA BERTAGNOLLI IS 1223 00:52:19,221 --> 00:52:23,292 NOW IN THE HOUSE, SO TO SPEAK. 1224 00:52:23,292 --> 00:52:26,028 SHE IS THE 17th DIRECTOR OF 1225 00:52:26,028 --> 00:52:28,431 NIH AND THE SECOND FEMALE 1226 00:52:28,431 --> 00:52:28,864 DIRECTOR. 1227 00:52:28,864 --> 00:52:32,501 SHE WAS SWORN IN ON NOVEMBER 9, 1228 00:52:32,501 --> 00:52:35,104 AS SHE HAS SAID MULTIPLE TIMES 1229 00:52:35,104 --> 00:52:38,507 IN THE AMERICAN AIRLINES LOUNGE 1230 00:52:38,507 --> 00:52:40,142 AT REAGAN NATIONAL AIRPORT. 1231 00:52:40,142 --> 00:52:41,577 YOU NEVER KNOW WHEN THE 1232 00:52:41,577 --> 00:52:42,912 PRESIDENT IS GOING TO SIGN THE 1233 00:52:42,912 --> 00:52:44,280 APPOINTMENT AND AS SOON AS HE 1234 00:52:44,280 --> 00:52:47,383 SIGNED IT, SHE WAS SWORN IN. 1235 00:52:47,383 --> 00:52:50,419 YOU MAY HAVE READ IN THE NEWS 1236 00:52:50,419 --> 00:52:53,155 ABOUT THE PROLONGED CONFIRMATION 1237 00:52:53,155 --> 00:52:57,226 PROCESS WHICH WAS HELD UP BY 1238 00:52:57,226 --> 00:52:58,861 CONCERNS FROM SENATOR SANDERS 1239 00:52:58,861 --> 00:53:00,663 ABOUT DRUG PRICES, NOT THAT NIH 1240 00:53:00,663 --> 00:53:03,899 HAS A LOT TO DO WITH DRUG 1241 00:53:03,899 --> 00:53:06,302 PRICES, BUT THERE WAS A VERY 1242 00:53:06,302 --> 00:53:08,137 PROLONGED CONFIRMATION PROCESS. 1243 00:53:08,137 --> 00:53:10,339 THAT BEING SAID, THE ULTIMATE 1244 00:53:10,339 --> 00:53:12,742 VOTE IN THE SENATE WAS 1245 00:53:12,742 --> 00:53:14,944 SIGNIFICANTLY BIPARTISAN, SO WE 1246 00:53:14,944 --> 00:53:15,911 SHOULD CELEBRATE THAT. 1247 00:53:15,911 --> 00:53:18,447 FOR THOSE WHO DON'T KNOW HER, 1248 00:53:18,447 --> 00:53:20,416 SHE'S A SURGEON ONCOLOGIST WHO 1249 00:53:20,416 --> 00:53:22,618 SERVED AS THE DIRECTOR OF THE 1250 00:53:22,618 --> 00:53:22,852 NCI. 1251 00:53:22,852 --> 00:53:28,524 SHE'S BEEN AT NIH FOR ABOUT A 1252 00:53:28,524 --> 00:53:29,725 YEAR FOLLOWING MULTIPLE 1253 00:53:29,725 --> 00:53:31,193 LEADERSHIP POSITIONS IN THE 1254 00:53:31,193 --> 00:53:32,261 ONCOLOGY COMMUNITY. 1255 00:53:32,261 --> 00:53:33,562 AND SO IT'S GREAT, BECAUSE WE DO 1256 00:53:33,562 --> 00:53:34,330 KNOW HER. 1257 00:53:34,330 --> 00:53:37,199 WE HAVE BEEN WORKING WITH HER 1258 00:53:37,199 --> 00:53:40,703 FOR THE PAST YEAR, BUT I'LL ALSO 1259 00:53:40,703 --> 00:53:42,972 SAY THAT SHE HAS SOME NEW IDEAS 1260 00:53:42,972 --> 00:53:44,607 AND IS A DEFINITE BREATH OF 1261 00:53:44,607 --> 00:53:47,710 FRESH AIR SO IT'S VERY EXCITING 1262 00:53:47,710 --> 00:53:50,212 TO WORK WITH HER AS SHE BEGINS 1263 00:53:50,212 --> 00:53:52,281 TO ROLL OUT HER VISION. 1264 00:53:52,281 --> 00:53:54,683 NEXT SLIDE. 1265 00:53:54,683 --> 00:53:55,451 NEXT SLIDE. 1266 00:53:55,451 --> 00:53:57,553 WELL, I WISH I COULD SAY MORE 1267 00:53:57,553 --> 00:54:00,055 ABOUT THE BUDGET. 1268 00:54:00,055 --> 00:54:02,358 WE HAVE PREPARED TWICE FOR 1269 00:54:02,358 --> 00:54:03,926 POTENTIAL GOVERNMENT SHUTDOWNS, 1270 00:54:03,926 --> 00:54:05,427 SINCE OCTOBER 1. 1271 00:54:05,427 --> 00:54:07,830 AND NOW WE ESSENTIALLY HAVE A 1272 00:54:07,830 --> 00:54:12,735 STAY OF EXECUTION UNTIL FEBRUARY 1273 00:54:12,735 --> 00:54:12,968 2. 1274 00:54:12,968 --> 00:54:15,037 YOU KNOW, I WISH I COULD TELL 1275 00:54:15,037 --> 00:54:15,805 YOU MORE. 1276 00:54:15,805 --> 00:54:17,907 NOBODY SEEMS TO KNOW WHAT'S 1277 00:54:17,907 --> 00:54:19,341 GOING TO HAPPEN. 1278 00:54:19,341 --> 00:54:22,044 I GATHER THAT NOBODY REALLY 1279 00:54:22,044 --> 00:54:23,913 WANTS A GOVERNMENT SHUTDOWN IN 1280 00:54:23,913 --> 00:54:25,781 AN ELECTION YEAR BUT THE 1281 00:54:25,781 --> 00:54:28,184 IMPORTANT THING IS A CONTINUING 1282 00:54:28,184 --> 00:54:31,153 RESOLUTION WITH A FLAT BUDGET IS 1283 00:54:31,153 --> 00:54:34,123 PROBABLY OUR BEST CASE SCENARIO, 1284 00:54:34,123 --> 00:54:35,758 AS YOU PROBABLY ARE AWARE THERE 1285 00:54:35,758 --> 00:54:38,460 ARE CERTAIN MEMBERS OF CONGRESS 1286 00:54:38,460 --> 00:54:40,029 WHO REALLY WANT A SIGNIFICANT 1287 00:54:40,029 --> 00:54:43,632 SLASH IN FUNDING, AND THAT WOULD 1288 00:54:43,632 --> 00:54:44,400 HAVE SIGNIFICANT IMPLICATIONS 1289 00:54:44,400 --> 00:54:47,269 FOR WHAT WE CAN DO. 1290 00:54:47,269 --> 00:54:49,338 SO, WE'RE CURRENTLY OPERATING 1291 00:54:49,338 --> 00:54:52,274 UNDER A CONTINUING RESOLUTION, 1292 00:54:52,274 --> 00:54:54,376 WHICH IS A FLAT BUDGET, 1293 00:54:54,376 --> 00:54:56,145 ESSENTIALLY ROLLING OUT WHAT WE 1294 00:54:56,145 --> 00:54:57,780 HAD LAST YEAR. 1295 00:54:57,780 --> 00:55:01,550 SO, IT'S STILL BUSINESS AS 1296 00:55:01,550 --> 00:55:03,352 USUAL, WE'RE TENDING TO BE 1297 00:55:03,352 --> 00:55:07,623 CONSERVATIVE IN TERMS OF FUND 1298 00:55:07,623 --> 00:55:10,025 GRANT APPLICATIONS AT A LOW 1299 00:55:10,025 --> 00:55:10,759 PAYLINE PERCENTAGE BECAUSE WE 1300 00:55:10,759 --> 00:55:12,528 DON'T KNOW WHAT'S GOING TO 1301 00:55:12,528 --> 00:55:12,828 HAPPEN. 1302 00:55:12,828 --> 00:55:14,496 BUT, YOU KNOW, NO ONE WOULD EVER 1303 00:55:14,496 --> 00:55:16,165 RUN A BUSINESS LIKE THIS, LET ME 1304 00:55:16,165 --> 00:55:17,900 TELL YOU THAT. 1305 00:55:17,900 --> 00:55:20,336 I MEAN, IT'S QUITE POSSIBLE THAT 1306 00:55:20,336 --> 00:55:22,538 ONCE WE HAVE A PERMANENT BUDGET 1307 00:55:22,538 --> 00:55:24,273 FOR FISCAL YEAR 24, WHICH IS 1308 00:55:24,273 --> 00:55:26,442 LIKELY TO BE HALFWAY THROUGH THE 1309 00:55:26,442 --> 00:55:30,713 FISCAL YEAR, WE WILL GO BACK AND 1310 00:55:30,713 --> 00:55:31,614 START FUNDING APPLICATIONS THAT 1311 00:55:31,614 --> 00:55:34,717 WOULD BE IN OUR USUAL PAYLINE. 1312 00:55:34,717 --> 00:55:36,752 SO, PUTS A LOT OF STRESS ON OUR 1313 00:55:36,752 --> 00:55:38,921 STAFF AS WELL AS THE 1314 00:55:38,921 --> 00:55:40,689 INVESTIGATORS WHO DON'T KNOW 1315 00:55:40,689 --> 00:55:43,626 WHAT'S GOING ON, PERHAPS 1316 00:55:43,626 --> 00:55:44,093 REAPPLYING. 1317 00:55:44,093 --> 00:55:45,594 I DON'T KNOW WHAT TO SAY. 1318 00:55:45,594 --> 00:55:49,431 WE'RE KIND OF AT THE MERCY OF 1319 00:55:49,431 --> 00:55:50,566 CONGRESS. 1320 00:55:50,566 --> 00:55:51,867 NEXT SLIDE. 1321 00:55:51,867 --> 00:55:55,804 PART OF OUR JOBS ARE TO MEET 1322 00:55:55,804 --> 00:55:56,705 WITH REPRESENTATIVES IN 1323 00:55:56,705 --> 00:56:00,276 CONGRESS, AND INDICATE TO THEM 1324 00:56:00,276 --> 00:56:03,579 WHAT WE'RE DOING, GET TO KNOW 1325 00:56:03,579 --> 00:56:04,446 THEM, HOPEFULLY DEVELOP 1326 00:56:04,446 --> 00:56:07,082 RELATIONSHIPS SO THAT THEY CAN 1327 00:56:07,082 --> 00:56:08,350 CHAMPION FOR OUR INTERESTS, SO 1328 00:56:08,350 --> 00:56:17,259 IN THE FALL I MET WITH 1329 00:56:17,259 --> 00:56:20,562 REPRESENTATIVE KARAVEYO FROM 1330 00:56:20,562 --> 00:56:23,632 NORTHERN COLORADO, A 1331 00:56:23,632 --> 00:56:25,601 PEDIATRICIAN, WAS IN PRIMARY 1332 00:56:25,601 --> 00:56:26,802 CARE AND INTERESTED IN A NUMBER 1333 00:56:26,802 --> 00:56:29,204 OF OUR ACTIVITIES THAT AFFECTED 1334 00:56:29,204 --> 00:56:30,239 HER PRACTICE. 1335 00:56:30,239 --> 00:56:37,313 MORE RECENTLY I MET WITH SENATOR 1336 00:56:37,313 --> 00:56:39,682 JOHN BOOZMAN OF ARKANSAS, VERY 1337 00:56:39,682 --> 00:56:42,184 CONCERNED ABOUT THE INCREASE IN 1338 00:56:42,184 --> 00:56:46,388 MATERNAL MORTALITY AND IN 1339 00:56:46,388 --> 00:56:47,489 PARTICULAR HIS STATE'S 1340 00:56:47,489 --> 00:56:49,224 DIFFICULTIES AND CHALLENGES WITH 1341 00:56:49,224 --> 00:56:50,526 TAKING CARE OF PREGNANT PEOPLE. 1342 00:56:50,526 --> 00:56:53,362 ONE OF THE THINGS WE DISCUSSED 1343 00:56:53,362 --> 00:56:55,798 THAT I HADN'T THOUGHT ABOUT, WE 1344 00:56:55,798 --> 00:57:00,836 WERE VERY AWARE OF MATERNITY 1345 00:57:00,836 --> 00:57:03,138 CARE DESERTS AND DIFFICULTY 1346 00:57:03,138 --> 00:57:05,607 GETTING OBSTETRIC CARE FOR TWO 1347 00:57:05,607 --> 00:57:09,378 MILLION PREGNANT PEOPLE A YEAR, 1348 00:57:09,378 --> 00:57:10,679 BUT HE MENTIONED AMBULANCES, 1349 00:57:10,679 --> 00:57:13,182 THAT THAT'S A REAL ISSUE IN 1350 00:57:13,182 --> 00:57:16,418 RURAL AREAS OF ARKANSAS THAT THE 1351 00:57:16,418 --> 00:57:18,420 AMBULANCE COMPANIES DON'T WANT 1352 00:57:18,420 --> 00:57:19,755 TO TRAVEL TWO HOURS FOR A 1353 00:57:19,755 --> 00:57:22,825 PATIENT WHO IS ON MEDICAID, FOR 1354 00:57:22,825 --> 00:57:24,226 EXAMPLE, SO THAT'S SORT OF 1355 00:57:24,226 --> 00:57:26,628 ANOTHER AREA THAT WE HAVE TO 1356 00:57:26,628 --> 00:57:28,731 THINK ABOUT BECAUSE WE HAD -- 1357 00:57:28,731 --> 00:57:30,466 WE'RE CERTAINLY WORKING ON 1358 00:57:30,466 --> 00:57:31,700 TECHNOLOGY THAT WILL RECOGNIZE 1359 00:57:31,700 --> 00:57:33,068 COMPLICATIONS OF PREGNANCY BUT 1360 00:57:33,068 --> 00:57:34,636 THAT'S NOT GOING TO DO VERY MUCH 1361 00:57:34,636 --> 00:57:36,071 IF YOU'RE LIVING TWO HOURS FROM 1362 00:57:36,071 --> 00:57:40,209 A HOSPITAL AND YOU CAN'T GET TO 1363 00:57:40,209 --> 00:57:40,976 THE HOSPITAL. 1364 00:57:40,976 --> 00:57:44,046 SO, THESE MEETINGS ARE VERY 1365 00:57:44,046 --> 00:57:44,913 IMPORTANT BILATERALLY BECAUSE WE 1366 00:57:44,913 --> 00:57:47,883 CAN SHARE WITH THEM WHAT WE AND 1367 00:57:47,883 --> 00:57:49,418 NIH OVERALL ARE DOING, WE CAN 1368 00:57:49,418 --> 00:57:50,953 HEAR FROM THEM WHAT SOME 1369 00:57:50,953 --> 00:57:53,022 CHALLENGES ARE. 1370 00:57:53,022 --> 00:57:54,656 NEXT SLIDE PLEASE. 1371 00:57:54,656 --> 00:57:56,325 NEXT SLIDE. 1372 00:57:56,325 --> 00:57:58,861 SO, I THINK YOU'RE ALL AWARE OF 1373 00:57:58,861 --> 00:58:01,030 THIS ACD WORKING GROUP, THE 1374 00:58:01,030 --> 00:58:02,998 DIVERSITY SUBGROUP ON 1375 00:58:02,998 --> 00:58:05,067 INDIVIDUALS WITH DISABILITIES. 1376 00:58:05,067 --> 00:58:10,105 AND IN THEIR REPORT, THEY 1377 00:58:10,105 --> 00:58:11,640 RECOMMENDED THAT ONE IMMEDIATE 1378 00:58:11,640 --> 00:58:13,709 IMMEDIATE ACTION TO SUPPORT 1379 00:58:13,709 --> 00:58:15,577 DISABILITY INCLUSION IS REMOVE 1380 00:58:15,577 --> 00:58:16,779 LANGUAGE OF REMOVING DISABILITY 1381 00:58:16,779 --> 00:58:19,515 FROM OVERALL NIH MISSION 1382 00:58:19,515 --> 00:58:19,782 STATEMENT. 1383 00:58:19,782 --> 00:58:21,917 THE CURRENT MISSION STATE COULD 1384 00:58:21,917 --> 00:58:24,453 BE TERMED AS PERPETUATING 1385 00:58:24,453 --> 00:58:26,522 ABLEIST BELIEFS, THAT DISABLED 1386 00:58:26,522 --> 00:58:34,396 PEOPLE ARE FLAWED AND NEED TO BE 1387 00:58:34,396 --> 00:58:35,064 "FIXED." 1388 00:58:35,064 --> 00:58:37,032 THAT LED TO INITIATIVE TO UPDATE 1389 00:58:37,032 --> 00:58:39,535 THE OVERALL NIH MISSION 1390 00:58:39,535 --> 00:58:40,302 STATEMENT. 1391 00:58:40,302 --> 00:58:42,971 THE CURRENT ONE IS, A QUOTE, TO 1392 00:58:42,971 --> 00:58:44,706 SEEK FUNDAMENTAL KNOWLEDGE ABOUT 1393 00:58:44,706 --> 00:58:46,241 THE NATURE AND BEHAVIOR OF 1394 00:58:46,241 --> 00:58:47,476 LIVING SYSTEMS. 1395 00:58:47,476 --> 00:58:50,279 AND THE APPLICATION OF THAT 1396 00:58:50,279 --> 00:58:54,016 KNOWLEDGE TO ENHANCE HEALTH, 1397 00:58:54,016 --> 00:58:55,884 LENGTHEN LIFE, REDUCE ILLNESS 1398 00:58:55,884 --> 00:58:57,286 AND DISABILITY. 1399 00:58:57,286 --> 00:58:58,654 THE PROPOSED MISSION STATEMENT 1400 00:58:58,654 --> 00:59:02,091 WHICH MIGHT SOUND FAMILIAR TO 1401 00:59:02,091 --> 00:59:05,727 YOU BECAUSE IT TOOK KIND OF A 1402 00:59:05,727 --> 00:59:10,299 TONE FROM THE NICHD'S MISSION 1403 00:59:10,299 --> 00:59:13,602 STATEMENT, WHICH EMPHASIZES 1404 00:59:13,602 --> 00:59:15,037 OVERALL ABILITIES, THE PROPOSED 1405 00:59:15,037 --> 00:59:22,077 MISSION STATEMENT IS TO SEEK 1406 00:59:22,077 --> 00:59:23,278 FUNDAMENTAL KNOWLEDGE ABOUT 1407 00:59:23,278 --> 00:59:25,380 NATURE AND BY HEIFER OF LIVING 1408 00:59:25,380 --> 00:59:30,185 SIS TOM AND APPLY TO PREVENT OR 1409 00:59:30,185 --> 00:59:32,554 REDUCE FOR ALL PEOPLE. 1410 00:59:32,554 --> 00:59:34,223 THERE WAS AN OPPORTUNITY TO 1411 00:59:34,223 --> 00:59:35,524 RESPOND VIA PUBLIC REQUEST FOR 1412 00:59:35,524 --> 00:59:36,959 INFORMATION, HOPEFULLY MANY OF 1413 00:59:36,959 --> 00:59:47,269 YOU DID RESPOND. 1414 00:59:54,109 --> 00:59:56,345 THE RESPONSES WERE DUE NOVEMBER 1415 00:59:56,345 --> 00:59:56,879 24. 1416 00:59:56,879 --> 00:59:58,647 OUR MISSION STATE IS OPTIMIZE 1417 00:59:58,647 --> 01:00:09,291 ABILITIES FOR ALL, THE WORD 1418 01:00:09,291 --> 01:00:10,225 "OPTIMIZE" WAS AN IMPORTANT 1419 01:00:10,225 --> 01:00:12,427 ADDITION FROM THOSE WHO 1420 01:00:12,427 --> 01:00:13,495 PARTICIPATED. 1421 01:00:13,495 --> 01:00:15,697 THE 2023 NIH DIRECTOR'S AWARD 1422 01:00:15,697 --> 01:00:18,534 WAS GIVEN TO THE ACD WORKING 1423 01:00:18,534 --> 01:00:21,737 GROUP ON DIVERSITY SUBGROUP ON 1424 01:00:21,737 --> 01:00:23,906 INDIVIDUALS WITH DISABILITIES, 1425 01:00:23,906 --> 01:00:26,408 AND THE CITATION WAS FOR 1426 01:00:26,408 --> 01:00:27,309 LEADERSHIP OF COMPREHENSIVE 1427 01:00:27,309 --> 01:00:28,944 STRATEGY DOCUMENT THAT ADVANCES 1428 01:00:28,944 --> 01:00:31,013 THE INCLUSION OF INDIVIDUALS 1429 01:00:31,013 --> 01:00:32,781 WITH DISABILITIES IN THE 1430 01:00:32,781 --> 01:00:33,749 SCIENTIFIC WORKFORCE. 1431 01:00:33,749 --> 01:00:38,554 AND I WOULD LIKE TO ACKNOWLEDGE 1432 01:00:38,554 --> 01:00:44,693 THERESA'S MAJOR CONTRIBUTIONS AS 1433 01:00:44,693 --> 01:00:49,398 WELL AS KATHY MANN KOEPKE WHO 1434 01:00:49,398 --> 01:00:51,800 WORKED EXTENSIVELY WITHIN THIS 1435 01:00:51,800 --> 01:00:53,468 WORKING GROUP. 1436 01:00:53,468 --> 01:00:55,637 SO, YOU KNOW, AS REPRESENTATIVES 1437 01:00:55,637 --> 01:00:59,374 OF NICHD, AS WELL AS NCMRR, OUR 1438 01:00:59,374 --> 01:01:00,676 VOICES WERE HEARD SO I WOULD 1439 01:01:00,676 --> 01:01:03,011 LIKE TO ACKNOWLEDGE THEIR GREAT 1440 01:01:03,011 --> 01:01:06,181 WORK AND THANK THEM FOR THEIR 1441 01:01:06,181 --> 01:01:07,382 EFFORTS. 1442 01:01:07,382 --> 01:01:08,250 NEXT SLIDE PLEASE. 1443 01:01:08,250 --> 01:01:10,752 A MAJOR THING HAPPENED IN 1444 01:01:10,752 --> 01:01:12,721 OCTOBER OF 2023. 1445 01:01:12,721 --> 01:01:14,590 THE NIH DESIGNATED PEOPLE WITH 1446 01:01:14,590 --> 01:01:18,427 DISABILITIES AS A HEALTH 1447 01:01:18,427 --> 01:01:21,029 DISPARITY POPULATION. 1448 01:01:21,029 --> 01:01:23,799 THIS SUPPORTS NICHD'S MISSION 1449 01:01:23,799 --> 01:01:25,434 AREA OF INCLUDING PEOPLE WITH 1450 01:01:25,434 --> 01:01:26,735 DISABILITIES IN RESEARCH AND 1451 01:01:26,735 --> 01:01:28,070 WILL PROVIDE NEW FUNDING 1452 01:01:28,070 --> 01:01:28,604 OPPORTUNITIES. 1453 01:01:28,604 --> 01:01:30,906 SO RIGHT NOW THERE'S A NEW 1454 01:01:30,906 --> 01:01:32,874 OPPORTUNITY FOR INNOVATIVE 1455 01:01:32,874 --> 01:01:34,209 APPROACHES AND INTERVENTIONS 1456 01:01:34,209 --> 01:01:36,945 THAT ADDRESS THE INTERSECTING 1457 01:01:36,945 --> 01:01:38,380 IMPACT OF DISABILITY, RACE, 1458 01:01:38,380 --> 01:01:41,750 ETHNICITY, AS WELL AS 1459 01:01:41,750 --> 01:01:42,651 SOCIOECONOMIC STATUS ON 1460 01:01:42,651 --> 01:01:45,153 HEALTHCARE ACCESS AND HEALTH 1461 01:01:45,153 --> 01:01:45,420 OUTCOMES. 1462 01:01:45,420 --> 01:01:47,456 SO, I'LL JUST GIVE YOU A MOMENT 1463 01:01:47,456 --> 01:01:48,991 TO WRITE THAT DOWN, ALTHOUGH I 1464 01:01:48,991 --> 01:01:50,425 BELIEVE YOU HAVE COPIES OF THE 1465 01:01:50,425 --> 01:01:54,263 SLIDES, BUT THAT IS AN 1466 01:01:54,263 --> 01:01:55,564 OPPORTUNITY THAT MAY BE 1467 01:01:55,564 --> 01:01:58,934 IMPORTANT FOR MANY OF YOU AND 1468 01:01:58,934 --> 01:02:00,168 PEOPLE WORKING WITHIN YOUR 1469 01:02:00,168 --> 01:02:02,237 GROUPS. 1470 01:02:02,237 --> 01:02:03,872 NEXT SLIDE. 1471 01:02:03,872 --> 01:02:04,373 OKAY. 1472 01:02:04,373 --> 01:02:07,376 SO, WE'RE STARTING TO THINK 1473 01:02:07,376 --> 01:02:10,879 ABOUT OUR NEXT STRATEGIC PLAN, 1474 01:02:10,879 --> 01:02:13,248 SO OUR PREVIOUS STRATEGIC PLAN 1475 01:02:13,248 --> 01:02:15,684 WAS IN 2019. 1476 01:02:15,684 --> 01:02:16,551 IT WAS ESSENTIALLY THE 2020 1477 01:02:16,551 --> 01:02:17,152 STRATEGIC PLAN. 1478 01:02:17,152 --> 01:02:20,722 I WANT TO THANK PEOPLE WHO HAD 1479 01:02:20,722 --> 01:02:26,094 INPUT INTO THAT BY VIRTUE OF THE 1480 01:02:26,094 --> 01:02:29,598 AUTHORIZATION LANGUAGE IN THE 1481 01:02:29,598 --> 01:02:31,700 21ST CENTURY CURES ACT, EACH NIH 1482 01:02:31,700 --> 01:02:33,902 INSTITUTE AND CENTER HAS TO 1483 01:02:33,902 --> 01:02:34,836 REFRESH THEIR STRATEGIC PLAN 1484 01:02:34,836 --> 01:02:38,073 EVERY FIVE YEARS. 1485 01:02:38,073 --> 01:02:41,877 NOW, BACK IN 2019 WE HAD NOT HAD 1486 01:02:41,877 --> 01:02:43,512 A STRATEGIC PLAN FOR 20 YEARS. 1487 01:02:43,512 --> 01:02:46,581 SO WE HAD TO DO SOME HEAVY 1488 01:02:46,581 --> 01:02:49,985 LIFTING TO ESSENTIALLY CREATE A 1489 01:02:49,985 --> 01:02:51,086 MODERN STRATEGIC PLAN. 1490 01:02:51,086 --> 01:02:54,456 SO THAT PLAN NOT ONLY COVERED 1491 01:02:54,456 --> 01:02:56,758 AREAS OF SCIENTIFIC RESEARCH 1492 01:02:56,758 --> 01:03:00,162 FOCUS BUT ALSO LOOKED AT THE 1493 01:03:00,162 --> 01:03:01,797 ORGANIZATION AND THE INSTITUTE 1494 01:03:01,797 --> 01:03:04,433 WITH REGARD TO STEWARDSHIP, 1495 01:03:04,433 --> 01:03:05,834 MANAGEMENT, ACCOUNTABILITY. 1496 01:03:05,834 --> 01:03:09,571 AND WE'VE BEEN TRACKING AND 1497 01:03:09,571 --> 01:03:10,806 DOCUMENTING ACTIVITIES AND 1498 01:03:10,806 --> 01:03:12,107 ACHIEVEMENTS TOWARDS THE 1499 01:03:12,107 --> 01:03:12,774 OBJECTIVES LISTED IN THAT 1500 01:03:12,774 --> 01:03:14,509 STRATEGIC PLAN. 1501 01:03:14,509 --> 01:03:17,479 I'M GOING TO SHOW YOU SOME OF 1502 01:03:17,479 --> 01:03:20,749 THE PROGRESS THAT WE'VE MADE. 1503 01:03:20,749 --> 01:03:22,484 OVER THE NEXT YEAR, NOW THE 1504 01:03:22,484 --> 01:03:25,354 CALENDAR YEAR, WE'RE GOING TO 1505 01:03:25,354 --> 01:03:27,522 REFRESH THE STRATEGIC PLAN. 1506 01:03:27,522 --> 01:03:31,460 WE ARE LOOKING BACK TO SEE WHAT 1507 01:03:31,460 --> 01:03:33,095 DID WE ACCOMPLISH, WHERE THE 1508 01:03:33,095 --> 01:03:36,264 GAPS, WHAT COULD WE DO BETTER, 1509 01:03:36,264 --> 01:03:37,599 WHAT PROGRAMS COULD BE 1510 01:03:37,599 --> 01:03:40,469 SUNSETTED, AND FIRST START WITH 1511 01:03:40,469 --> 01:03:43,739 OUR INTERNAL STAFF TO SUGGEST 1512 01:03:43,739 --> 01:03:46,808 NEW AREAS OF SCIENTIFIC FOCUS, 1513 01:03:46,808 --> 01:03:49,211 NEW OPPORTUNITIES, AND THEN BE 1514 01:03:49,211 --> 01:03:51,713 ON THE LOOKOUT FOR OPPORTUNITIES 1515 01:03:51,713 --> 01:03:52,481 TO PROVIDE EXTERNAL FEEDBACK AND 1516 01:03:52,481 --> 01:03:54,249 OF COURSE YOU'RE WELCOME TO DO 1517 01:03:54,249 --> 01:03:55,884 THAT WITHIN THE CONTEXT OF THIS 1518 01:03:55,884 --> 01:03:57,652 MEETING AS WELL. 1519 01:03:57,652 --> 01:04:01,056 BUT WE WILL BE HAVING A REQUEST 1520 01:04:01,056 --> 01:04:03,258 FOR INFORMATION FROM BOTH THE 1521 01:04:03,258 --> 01:04:05,227 SCIENTIFIC COMMUNITIES AS WELL 1522 01:04:05,227 --> 01:04:08,029 AS THE ADVOCACY COMMUNITIES, AND 1523 01:04:08,029 --> 01:04:09,164 PEOPLE WITH LIVED EXPERIENCE. 1524 01:04:09,164 --> 01:04:11,666 I'M GOING TO START WITH PROGRESS 1525 01:04:11,666 --> 01:04:12,534 NOW TOWARDS SOME ASPIRATIONAL 1526 01:04:12,534 --> 01:04:12,734 GOALS. 1527 01:04:12,734 --> 01:04:14,536 AT THE BACK OF THE STRATEGIC 1528 01:04:14,536 --> 01:04:18,940 PLAN, YOU CAN FIND IT JUST 1529 01:04:18,940 --> 01:04:20,542 GOOGLE NICHD STRATEGIC PLAN, IT 1530 01:04:20,542 --> 01:04:21,209 COMES RIGHT UP. 1531 01:04:21,209 --> 01:04:24,479 IN THE BACK OF IT, THERE WERE 1532 01:04:24,479 --> 01:04:24,980 TEN ASPIRATIONAL GOALS. 1533 01:04:24,980 --> 01:04:25,914 NEXT SLIDE PLEASE. 1534 01:04:25,914 --> 01:04:27,849 I'M NOT GOING THROUGH ALL OF 1535 01:04:27,849 --> 01:04:30,185 THEM, JUST GOING TO PICK SOME OF 1536 01:04:30,185 --> 01:04:30,852 THEM. 1537 01:04:30,852 --> 01:04:33,455 I PICKED THREE THAT ARE MOST 1538 01:04:33,455 --> 01:04:34,990 RELEVANT TO NCMRR. 1539 01:04:34,990 --> 01:04:38,794 SO ONE IS THE TO ADVANCE THE 1540 01:04:38,794 --> 01:04:41,763 ABILITY TO REGENERATE HUMAN 1541 01:04:41,763 --> 01:04:43,098 LIMBS BY USING EMERGING 1542 01:04:43,098 --> 01:04:44,599 TECHNOLOGIES TO ACTIVATE THE 1543 01:04:44,599 --> 01:04:47,536 BODY'S OWN GROWTH PATHWAYS AND 1544 01:04:47,536 --> 01:04:48,103 PROCESSES. 1545 01:04:48,103 --> 01:04:51,173 THE NEXT ONE WHICH IS 1546 01:04:51,173 --> 01:04:52,474 PARTICULARLY RELEVANT TO WHAT 1547 01:04:52,474 --> 01:04:54,910 THERESA WAS TALKING ABOUT WITH 1548 01:04:54,910 --> 01:04:56,645 THE VISUAL IMPAIRMENT 1549 01:04:56,645 --> 01:04:58,079 EXPERIENCED BY PRE-TERM BABIES, 1550 01:04:58,079 --> 01:05:00,582 IS TO ENHANCE THE SURVIVAL AND 1551 01:05:00,582 --> 01:05:03,185 HEALTHY DEVELOPMENT OF PRE-TERM 1552 01:05:03,185 --> 01:05:05,187 INFANTS BY EXPLORING THE ROLE OF 1553 01:05:05,187 --> 01:05:05,954 ENVIRONMENTAL FACTORS. 1554 01:05:05,954 --> 01:05:08,924 AND THE THIRD IS TO FACILITATE 1555 01:05:08,924 --> 01:05:17,132 THE APPLICATION OF PRECISION 1556 01:05:17,132 --> 01:05:18,567 MEDICINE APPROACHES IN CHILDREN 1557 01:05:18,567 --> 01:05:20,936 BY CAPITALIZING ON ADVANCES IN 1558 01:05:20,936 --> 01:05:23,138 GENOMICS AND UPDATING NORMATIVE 1559 01:05:23,138 --> 01:05:25,307 DATA ON GROWTH OF DIVERSE 1560 01:05:25,307 --> 01:05:32,013 POPULATION INCLUDING THOSE WITH 1561 01:05:32,013 --> 01:05:32,881 INTELLECTUAL, DEVELOPMENTAL, 1562 01:05:32,881 --> 01:05:34,182 PHYSICAL DISABILITIES. 1563 01:05:34,182 --> 01:05:36,618 LIVER GENERATION NEEDS TO GO 1564 01:05:36,618 --> 01:05:39,454 FIRST, PROBABLY OF MOST -- LIMB 1565 01:05:39,454 --> 01:05:40,322 REGENERATION GOES FIRST, 1566 01:05:40,322 --> 01:05:41,423 PROBABLY OF MOST INTEREST TO 1567 01:05:41,423 --> 01:05:42,190 YOU. 1568 01:05:42,190 --> 01:05:43,959 YOU CAN SEE TRENDS IN FUNDING. 1569 01:05:43,959 --> 01:05:48,597 ON THE LEFT IS SOME BASELINE 1570 01:05:48,597 --> 01:05:49,397 INFORMATION, THERE ARE 1571 01:05:49,397 --> 01:05:51,867 2.1 MILLION PEOPLE IN THE UNITED 1572 01:05:51,867 --> 01:05:54,569 STATES WHO HAVE LIMB LOSS, AND 1573 01:05:54,569 --> 01:05:58,507 WE WERE HEARING WITH THE 1574 01:05:58,507 --> 01:06:01,376 UNDERGRADUATE CHALLENGE AND 1575 01:06:01,376 --> 01:06:02,911 PEOPLE EXPERIENCE PAIN, 1576 01:06:02,911 --> 01:06:05,680 LONG-TERM DISABILITY, AND THERE 1577 01:06:05,680 --> 01:06:08,717 ARE SIGNIFICANT LIFETIME MEDICAL 1578 01:06:08,717 --> 01:06:11,219 COSTS AFTER LIMB AMPUTATION. 1579 01:06:11,219 --> 01:06:13,421 SO, I MEAN, IT'S GOOD NEWS, 1580 01:06:13,421 --> 01:06:16,491 THERE HAS BEEN AN UPWARD TREND 1581 01:06:16,491 --> 01:06:19,528 IN FUNDING IN THIS AREA. 1582 01:06:19,528 --> 01:06:21,062 AND THERE HAS BEEN SOME PROGRESS 1583 01:06:21,062 --> 01:06:23,798 IN TERMS OF THE RESEARCH. 1584 01:06:23,798 --> 01:06:26,535 SO, SOME VERY EXCITING WORK HAS 1585 01:06:26,535 --> 01:06:29,704 BEEN DONE IN PRE-CLINICAL AREAS, 1586 01:06:29,704 --> 01:06:32,908 SO IN SALAMANDERS, THE PATTERNS 1587 01:06:32,908 --> 01:06:37,812 OF GENE EXPRESSION ARE SIMILAR 1588 01:06:37,812 --> 01:06:38,480 BETWEEN DEVELOPING AND 1589 01:06:38,480 --> 01:06:39,347 REGENERATING LIMBS. 1590 01:06:39,347 --> 01:06:49,824 ALSO A GROUP HAS BUILT A KEY 1591 01:06:54,229 --> 01:06:57,566 MECHANISM BEHIND STEP IN ACTIVE 1592 01:06:57,566 --> 01:06:59,534 INHIBITION OF PROTEIN SYNTHESIS 1593 01:06:59,534 --> 01:07:02,604 DURING BLASTEMA FORMATION AND 1594 01:07:02,604 --> 01:07:03,104 GROWTH. 1595 01:07:03,104 --> 01:07:04,773 NEXT SLIDE PLEASE. 1596 01:07:04,773 --> 01:07:09,244 IN TERMS OF SURVIVAL AND HEALTH 1597 01:07:09,244 --> 01:07:15,150 OF PRE-TERM INFANTS, NO MAJOR 1598 01:07:15,150 --> 01:07:16,251 MAGIC BULLETS HERE. 1599 01:07:16,251 --> 01:07:17,986 UNFORTUNATELY THE BASELINE RATE 1600 01:07:17,986 --> 01:07:26,761 OF PREMATURITY IS IF ANYTHING 1601 01:07:26,761 --> 01:07:29,164 UPWARDS, APPROXIMATELY 9% OF 1602 01:07:29,164 --> 01:07:31,032 BABIES ARE ADMITTED TO NEONATAL 1603 01:07:31,032 --> 01:07:35,971 INTENSIVE CARE UNITS AT LEAST 1604 01:07:35,971 --> 01:07:38,139 DATA AS OF 2021. 1605 01:07:38,139 --> 01:07:39,341 FUNDING IS ESSENTIALLY FLAT, 1606 01:07:39,341 --> 01:07:40,675 MAYBE SLIGHTLY DOWN. 1607 01:07:40,675 --> 01:07:47,215 WE'RE CONTINUING TO FUND OUR 1608 01:07:47,215 --> 01:07:48,316 NEONATAL RESEARCH NETWORK AND 1609 01:07:48,316 --> 01:07:49,584 MATERNAL-FETAL NETWORK. 1610 01:07:49,584 --> 01:07:52,354 WE HAVE FUNDED RESEARCH THAT HAS 1611 01:07:52,354 --> 01:07:55,090 RESULTED IN SOME IMPORTANT 1612 01:07:55,090 --> 01:07:56,291 FINDINGS. 1613 01:07:56,291 --> 01:07:58,693 FOR EXAMPLE, BABIES THAT ARE FED 1614 01:07:58,693 --> 01:08:00,228 FORTIFIED HUMAN MILK HAVE 1615 01:08:00,228 --> 01:08:01,863 DIFFERENT GROWTH PATTERNS, ARE 1616 01:08:01,863 --> 01:08:06,601 DOING MUCH BETTER IN TERMS OF 1617 01:08:06,601 --> 01:08:07,936 GROWTH THAN UNFORTIFIED HUMAN 1618 01:08:07,936 --> 01:08:11,306 MILK, BABIES WHO RECEIVE 1619 01:08:11,306 --> 01:08:13,041 UNFORTIFIED HUMAN MILK. 1620 01:08:13,041 --> 01:08:15,043 ALSO PRE-TERM INFANTS EXPOSED TO 1621 01:08:15,043 --> 01:08:20,715 MORE SPEECH IN THE NICU GAINED 1622 01:08:20,715 --> 01:08:21,716 MORE WEIGHT, AND STEROID 1623 01:08:21,716 --> 01:08:23,551 TREATMENT TO THE MOTHER 1624 01:08:23,551 --> 01:08:25,854 OBVIOUSLY BEFORE BIRTH HELPS TO 1625 01:08:25,854 --> 01:08:28,590 IMPROVE SURVIVAL AND REDUCE 1626 01:08:28,590 --> 01:08:29,557 COMPLICATIONS AMONG EXTREMELY 1627 01:08:29,557 --> 01:08:31,426 PRE-TERM INFANTS. 1628 01:08:31,426 --> 01:08:32,527 SO THAT'S SOMETHING THAT WE'VE 1629 01:08:32,527 --> 01:08:35,697 KNOWN EVER SINCE I WAS IN 1630 01:08:35,697 --> 01:08:36,564 PRACTICE IN NEONATOLOGY, BUT 1631 01:08:36,564 --> 01:08:39,734 IT'S GETTING A LITTLE BIT MORE 1632 01:08:39,734 --> 01:08:41,403 REFINED IN TERMS OF THE DATA. 1633 01:08:41,403 --> 01:08:44,339 SO WHILE THE OVERALL FUNDING 1634 01:08:44,339 --> 01:08:47,409 HASN'T INCREASED, WE ARE 1635 01:08:47,409 --> 01:08:48,510 CONTINUING TO MAKE PROGRESS IN 1636 01:08:48,510 --> 01:08:51,846 THE CARE AND DEVELOPMENT OF 1637 01:08:51,846 --> 01:08:52,347 PRE-TERM INFANTS. 1638 01:08:52,347 --> 01:08:56,518 NEXT SLIDE PLEASE. 1639 01:08:56,518 --> 01:08:58,486 LASTLY, PRECISION PEDIATRICS IS 1640 01:08:58,486 --> 01:08:59,587 IMPORTANT BECAUSE OF THE 1641 01:08:59,587 --> 01:09:02,424 CHILDREN THAT WE SEE WHO HAVE 1642 01:09:02,424 --> 01:09:03,625 INTELLECTUAL DISABILITIES OR WHO 1643 01:09:03,625 --> 01:09:06,695 HAVE HEARING OR VISION 1644 01:09:06,695 --> 01:09:11,666 DISORDERS, USING DATA FROM THE 1645 01:09:11,666 --> 01:09:14,369 U.K. BIOBANK, 100,000 GENOMES 1646 01:09:14,369 --> 01:09:19,708 PROJECT, 44 TO 50% WERE ABLE TO 1647 01:09:19,708 --> 01:09:24,012 IDENTIFY AT LEAST A SINGLE GENE 1648 01:09:24,012 --> 01:09:26,381 EXPLANATION FOR THE 1649 01:09:26,381 --> 01:09:27,482 DISABILITIES. 1650 01:09:27,482 --> 01:09:29,250 AGAIN, FUNDING IS RELATIVELY 1651 01:09:29,250 --> 01:09:32,187 FLAT, INCLUDES A NUMBER OF 1652 01:09:32,187 --> 01:09:35,356 DIFFERENT AREAS OF SUPPORT FROM 1653 01:09:35,356 --> 01:09:35,790 NICHD. 1654 01:09:35,790 --> 01:09:38,426 AND THIS IS AN AREA THAT IS 1655 01:09:38,426 --> 01:09:40,161 MOVING ALONG QUITE QUICKLY. 1656 01:09:40,161 --> 01:09:42,263 THERE ARE A LOT OF COMPUTER 1657 01:09:42,263 --> 01:09:46,835 ALGORITHMS THAT ARE BEING 1658 01:09:46,835 --> 01:09:47,368 DEVELOPED. 1659 01:09:47,368 --> 01:09:50,839 IN THE INTERVAL SINCE THE 1660 01:09:50,839 --> 01:09:52,140 STRATEGIC PLAN, DNA SEQUENCE 1661 01:09:52,140 --> 01:09:55,977 ANALYSIS OF BABIES IN THE NICU 1662 01:09:55,977 --> 01:09:57,812 HAS BECOME INCORPORATED INTO 1663 01:09:57,812 --> 01:09:58,947 ROUTINE CARE. 1664 01:09:58,947 --> 01:10:02,317 GENETIC TESTING OF SIBLINGS OF 1665 01:10:02,317 --> 01:10:04,853 NEWBORNS WITH CANCER GENES COULD 1666 01:10:04,853 --> 01:10:06,488 REDUCE PEDIATRIC CANCER DEATHS 1667 01:10:06,488 --> 01:10:07,789 BY DEMONSTRATING WHO IS AT RISK, 1668 01:10:07,789 --> 01:10:13,294 WHO IS NOT AT RISK. 1669 01:10:13,294 --> 01:10:15,263 ALSO GWAS STUDIES ARE SUGGESTING 1670 01:10:15,263 --> 01:10:18,767 WAYS THAT DIFFERENT BABIES AND 1671 01:10:18,767 --> 01:10:19,634 CHILDREN ARE METABOLIZING DRUGS, 1672 01:10:19,634 --> 01:10:21,503 PARTICULARLY IF THEY HAVE BEEN 1673 01:10:21,503 --> 01:10:23,671 EXPOSED IN THE WOMB. 1674 01:10:23,671 --> 01:10:24,873 NEXT SLIDE PLEASE. 1675 01:10:24,873 --> 01:10:27,809 SO, I'D LIKE TO TALK ABOUT 1676 01:10:27,809 --> 01:10:28,243 PARTNERSHIPS. 1677 01:10:28,243 --> 01:10:33,515 SO, FIRST OF ALL NICHD AS AN 1678 01:10:33,515 --> 01:10:35,150 INSTITUTE WAS AWARDED THE 2023 1679 01:10:35,150 --> 01:10:37,585 CHARLES SANDERS M.D. PARTNERSHIP 1680 01:10:37,585 --> 01:10:40,755 AWARD FROM THE FOUNDATION FOR 1681 01:10:40,755 --> 01:10:41,089 NIH. 1682 01:10:41,089 --> 01:10:44,459 THIS IS RECOGNIZING SIGNIFICANT 1683 01:10:44,459 --> 01:10:46,227 CONTRIBUTIONS TO FNIH IN SUPPORT 1684 01:10:46,227 --> 01:10:50,698 OF MISSION OF NIH, THIS IS AN 1685 01:10:50,698 --> 01:10:52,801 EXTREMELY PRESTIGIOUS AWARD 1686 01:10:52,801 --> 01:10:55,203 GIVEN TO THE ENTIRE INSTITUTE. 1687 01:10:55,203 --> 01:10:57,839 REALLY WAS FOCUSING ON TWO 1688 01:10:57,839 --> 01:10:59,274 MATERNAL HEALTH CLINICAL TRIALS, 1689 01:10:59,274 --> 01:11:03,211 ONE OF WHICH IS COMPLETE, THE 1690 01:11:03,211 --> 01:11:04,412 A-PLUS STUDY SHOWED A SINGLE 1691 01:11:04,412 --> 01:11:14,789 DOSE OF THE LOW COST ORAL BD2K 1692 01:11:14,789 --> 01:11:18,293 AZITHROMYCIN IF GIVEN IN LABOR 1693 01:11:18,293 --> 01:11:19,828 RETUESDAY MATERNAL SEPSIS AND 1694 01:11:19,828 --> 01:11:21,396 DEATH BY ONE-THIRD, A 1695 01:11:21,396 --> 01:11:22,263 PARTNERSHIP BETWEEN THE BILL AND 1696 01:11:22,263 --> 01:11:24,332 MELINDA GATES FOUNDATION AND 1697 01:11:24,332 --> 01:11:26,901 NICHD'S GLOBAL NETWORK FOR WOMEN 1698 01:11:26,901 --> 01:11:29,170 AND CHILDREN'S HEALTH RESEARCH. 1699 01:11:29,170 --> 01:11:35,510 THIS WORK WAS DONE AT EIGHT 1700 01:11:35,510 --> 01:11:35,977 SITES, SEVEN LOW- AND 1701 01:11:35,977 --> 01:11:37,345 MIDDLE-INCOME COUNTRIES. 1702 01:11:37,345 --> 01:11:38,780 THERE ARE SECONDARY ANALYSES AND 1703 01:11:38,780 --> 01:11:39,113 SUBSTUDIES. 1704 01:11:39,113 --> 01:11:40,949 THAT'S ONE OF THE OTHER MEETINGS 1705 01:11:40,949 --> 01:11:43,484 GOING ON TODAY THAT I'M JUMPING 1706 01:11:43,484 --> 01:11:45,119 BACK AND FORTH FROM BECAUSE THEY 1707 01:11:45,119 --> 01:11:47,555 ARE SHOWING VERY INTERESTING 1708 01:11:47,555 --> 01:11:50,258 THINGS WITH THE SECONDARY 1709 01:11:50,258 --> 01:11:50,692 ANALYSIS. 1710 01:11:50,692 --> 01:11:52,227 ONGOING IS THE PRIORITY TRIAL 1711 01:11:52,227 --> 01:11:59,567 WHICH IS LOOKING AT GIVING 1712 01:11:59,567 --> 01:12:02,737 INTRAVENOUS POSTPARTUM IRON TO 1713 01:12:02,737 --> 01:12:05,707 TREAT ANEMIA IN POSTPARTUM WOMEN 1714 01:12:05,707 --> 01:12:07,775 BEFORE THEY CONCEIVE AGAIN TO 1715 01:12:07,775 --> 01:12:09,177 TRY TO REDUCE MORBIDITY. 1716 01:12:09,177 --> 01:12:10,411 NEXT SLIDE PLEASE. 1717 01:12:10,411 --> 01:12:11,713 WE'RE CONTINUING OUR PARTNERSHIP 1718 01:12:11,713 --> 01:12:14,449 WITH THE FOUNDATION FOR NIH. 1719 01:12:14,449 --> 01:12:18,953 THEY SERVE AS A THIRD PARTY 1720 01:12:18,953 --> 01:12:23,558 BROKER, WHICH ALLOWS A 1721 01:12:23,558 --> 01:12:24,192 PUBLIC/PRIVATE PARTNERSHIP, SO 1722 01:12:24,192 --> 01:12:26,294 THE GATES FOUNDATION CAN GIVE 1723 01:12:26,294 --> 01:12:30,365 THE MONEY TO FNIH AND WE CANNOT 1724 01:12:30,365 --> 01:12:31,766 DIRECTLY ACCEPT FUNDING FROM 1725 01:12:31,766 --> 01:12:33,635 FOUNDATIONS OR INDUSTRY BUT IT 1726 01:12:33,635 --> 01:12:36,571 CAN GO TO FNIH IN PARTNERSHIP 1727 01:12:36,571 --> 01:12:38,039 WITH NIH. 1728 01:12:38,039 --> 01:12:40,975 SO WE HAVE A BIG PROGRAM GOING 1729 01:12:40,975 --> 01:12:43,511 ON IN PEDIATRIC MEDICAL DEVICE 1730 01:12:43,511 --> 01:12:44,312 DEVELOPMENT. 1731 01:12:44,312 --> 01:12:47,115 THIS IS DEFINITELY RELEVANT TO 1732 01:12:47,115 --> 01:12:47,315 NCMRR. 1733 01:12:47,315 --> 01:12:49,617 AND ANOTHER PROGRAM THAT IS 1734 01:12:49,617 --> 01:12:52,353 LOOKING AT BIOMARKERS FOR RISK 1735 01:12:52,353 --> 01:12:55,757 STRATIFICATION AND DETECTION OF 1736 01:12:55,757 --> 01:12:57,625 EARLY ONSET PREECLAMPSIA. 1737 01:12:57,625 --> 01:13:00,228 AND WE ARE EXPLORING ADDITIONAL 1738 01:13:00,228 --> 01:13:01,329 OPPORTUNITIES THAT RELATE TO 1739 01:13:01,329 --> 01:13:05,266 MATERNAL AND CHILD HEALTH. 1740 01:13:05,266 --> 01:13:08,603 THEIR NEW C.E.O. WAS FORMERLY 1741 01:13:08,603 --> 01:13:12,173 THE DIRECTOR OF THE CDC, AND 1742 01:13:12,173 --> 01:13:15,810 THEN SPENT SOME TIME AT MERCK, 1743 01:13:15,810 --> 01:13:20,815 AND SHE HAS A DEFINITE PRIORITY 1744 01:13:20,815 --> 01:13:21,816 FOR MATERNAL/CHILD HEALTH, 1745 01:13:21,816 --> 01:13:23,017 THAT'S GOING TO BODY WELL FOR US 1746 01:13:23,017 --> 01:13:23,785 IN THE FUTURE. 1747 01:13:23,785 --> 01:13:25,186 NEXT SLIDE. 1748 01:13:25,186 --> 01:13:27,488 I ALREADY MENTIONED THE BILL AND 1749 01:13:27,488 --> 01:13:30,458 MELINDA GATES FOUNDATION. 1750 01:13:30,458 --> 01:13:32,327 WE HAVE AN ONGOING 1751 01:13:32,327 --> 01:13:34,195 COLLABORATION, NIH OVERALL DOES, 1752 01:13:34,195 --> 01:13:36,397 BUT WE PRIMARILY WORK WITH THEM 1753 01:13:36,397 --> 01:13:41,836 ON THE MATERNAL NEONATAL AND 1754 01:13:41,836 --> 01:13:43,705 CHILD WORKING GROUP WITH THREE 1755 01:13:43,705 --> 01:13:45,273 SUBGROUPS RELATED TO PREGNANCY 1756 01:13:45,273 --> 01:13:51,846 OUTCOMES, NEURODEVELOPMENT AND 1757 01:13:51,846 --> 01:13:53,147 GROWTH & NUTRITION. 1758 01:13:53,147 --> 01:13:56,517 I WON'T GO THROUGH A LOT OF TIME 1759 01:13:56,517 --> 01:13:59,220 ON -- WELL, WE'RE GOING TO CATCH 1760 01:13:59,220 --> 01:14:02,757 UP BECAUSE YOU WERE RUNNING A 1761 01:14:02,757 --> 01:14:05,827 LITTLE EARLY, SO I ALREADY 1762 01:14:05,827 --> 01:14:11,632 MENTIONED THIS AZITHROMYCIN, 1763 01:14:11,632 --> 01:14:12,700 THE A-PLUS AND PRIORITY TRIAL 1764 01:14:12,700 --> 01:14:15,570 ALSO CAN THE BILL AND MELINDA 1765 01:14:15,570 --> 01:14:18,072 GATES FOUNDATION LOOKING AT 1766 01:14:18,072 --> 01:14:19,941 OPPORTUNITIES TO STUDY 1767 01:14:19,941 --> 01:14:22,877 THERAPEUTICS IN PREGNANT PEOPLE 1768 01:14:22,877 --> 01:14:23,878 AND CHILDREN. 1769 01:14:23,878 --> 01:14:26,848 THE GATES FOUNDATION HAS A 1770 01:14:26,848 --> 01:14:28,016 VIRTUAL PREGNANCY EFFORT, AND 1771 01:14:28,016 --> 01:14:33,621 WE'RE WORKING TOGETHER WITH THEM 1772 01:14:33,621 --> 01:14:35,156 TO UNDERSTAND PHARMACOKINETIC 1773 01:14:35,156 --> 01:14:38,626 MODELING OF CERTAIN DRUGS. 1774 01:14:38,626 --> 01:14:45,299 WE'RE ALSO COLLABORATING ON 1775 01:14:45,299 --> 01:14:45,967 ELECTRO MYOMETRIAL IMAGING TO 1776 01:14:45,967 --> 01:14:49,470 LOOK FOR WHO IS HAVING PREMATURE 1777 01:14:49,470 --> 01:14:51,439 CONTRACTIONS, TO IDENTIFY WOMEN 1778 01:14:51,439 --> 01:14:54,609 WITH MILD BRAXTON HICKS VERSUS 1779 01:14:54,609 --> 01:14:57,245 THOSE WHO WILL GO ON TO DELIVER 1780 01:14:57,245 --> 01:14:57,645 PREMATURELY. 1781 01:14:57,645 --> 01:15:03,918 AND WE HAVE COLLABORATED ON 1782 01:15:03,918 --> 01:15:05,353 VARIOUS PROJECTS RELATED TO 1783 01:15:05,353 --> 01:15:08,222 COVID-19 ANTIBODY TESTING AND 1784 01:15:08,222 --> 01:15:08,756 VACCINE HESITANCY. 1785 01:15:08,756 --> 01:15:11,359 NEXT SLIDE PLEASE. 1786 01:15:11,359 --> 01:15:12,326 IN THE NEURODEVELOPMENT 1787 01:15:12,326 --> 01:15:15,196 SUBGROUP, THE MAIN THING IS THAT 1788 01:15:15,196 --> 01:15:22,970 WE'RE COLLABORATING ON AN EFFORT 1789 01:15:22,970 --> 01:15:31,045 TO USE THE HYPERFINE MACHINE, A 1790 01:15:31,045 --> 01:15:31,846 PORTABLE MRI SYSTEM. 1791 01:15:31,846 --> 01:15:33,781 THEY CAN LITERALLY PUT THIS IN A 1792 01:15:33,781 --> 01:15:35,116 VAN, DRIVE IT AROUND IN BOTH OF 1793 01:15:35,116 --> 01:15:40,354 THE U.S. AND ALSO IN LOW- AND 1794 01:15:40,354 --> 01:15:41,422 MIDDLE-INCOME COUNTRIES. 1795 01:15:41,422 --> 01:15:43,891 WE HAVE ONE OF THESE MACHINES 1796 01:15:43,891 --> 01:15:47,462 HERE ON CAMPUS AT THE NIH. 1797 01:15:47,462 --> 01:15:51,099 AND ONE OF OUR INTRAMURAL 1798 01:15:51,099 --> 01:15:51,766 INVESTIGATORS IS TESTING NOVEL 1799 01:15:51,766 --> 01:15:54,836 BIOMARKERS THAT COULD BE 1800 01:15:54,836 --> 01:15:56,003 SUITABLE FOR IMAGING 1801 01:15:56,003 --> 01:15:57,038 APPLICATIONS. 1802 01:15:57,038 --> 01:15:58,539 AND THEN LASTLY THE HEALTHY 1803 01:15:58,539 --> 01:16:03,244 BRAIN CHILD AND DEVELOPMENT 1804 01:16:03,244 --> 01:16:05,646 STUDY, HBCD, FOCUSING ON 1805 01:16:05,646 --> 01:16:09,150 PREGNANT INDIVIDUALS ACROSS THE 1806 01:16:09,150 --> 01:16:12,553 U.S. WHO ARE USING OPIOIDS AND 1807 01:16:12,553 --> 01:16:14,522 LOOKING AT THEIR EFFECTS ON 1808 01:16:14,522 --> 01:16:16,057 BRAIN DEVELOPMENT. 1809 01:16:16,057 --> 01:16:18,025 NEXT SLIDE PLEASE. 1810 01:16:18,025 --> 01:16:19,227 LASTLY, GROWTH AND NUTRITION HAS 1811 01:16:19,227 --> 01:16:23,397 A NUMBER OF THINGS GOING ON WITH 1812 01:16:23,397 --> 01:16:26,200 THE GATES FOUNDATION FOCUSING ON 1813 01:16:26,200 --> 01:16:28,169 HUMAN MILK. 1814 01:16:28,169 --> 01:16:37,044 THE NATURE AND FUNCTION OF 1815 01:16:37,044 --> 01:16:38,279 NUTRIOME, BIOMARKERS OF 1816 01:16:38,279 --> 01:16:41,249 DEVELOPMENT AND KNOWLEDGE 1817 01:16:41,249 --> 01:16:43,751 INDICATING DIETARY SUFFICIENCY, 1818 01:16:43,751 --> 01:16:44,719 CLIMATE CHANGE ANEMIA ECOLOGY. 1819 01:16:44,719 --> 01:16:47,355 NEXT SLIDE PLEASE. 1820 01:16:47,355 --> 01:16:52,160 LASTLY, WE HAD A MEETING WITH 1821 01:16:52,160 --> 01:16:55,997 THE PRESIDENT AND CEO OF INSERM, 1822 01:16:55,997 --> 01:17:00,368 THE FRENCH EQUIVALENT OF NIH. 1823 01:17:00,368 --> 01:17:02,770 WE HAVE PREVIOUSLY FUNDED AN 1824 01:17:02,770 --> 01:17:04,505 EXCHANGE PROGRAM FOR FELLOWS TO 1825 01:17:04,505 --> 01:17:06,841 EITHER GO THERE OR HAVE FRENCH 1826 01:17:06,841 --> 01:17:08,676 FELLOWS COME TO US. 1827 01:17:08,676 --> 01:17:11,979 THE FELLOW WHO CAME FROM FRANCE, 1828 01:17:11,979 --> 01:17:13,814 EXTREMELY PRODUCTIVE FOR HER. 1829 01:17:13,814 --> 01:17:19,620 SHE WAS HERE FOR SEVERAL YEARS 1830 01:17:19,620 --> 01:17:20,288 AND CO-AUTHORED OR 1831 01:17:20,288 --> 01:17:21,789 FIRST-AUTHORED 28 PUBLICATIONS 1832 01:17:21,789 --> 01:17:23,224 WHICH ALLOWED HER TO RETURN TO 1833 01:17:23,224 --> 01:17:26,827 FRANCE WITH A VERY PRESTIGIOUS 1834 01:17:26,827 --> 01:17:29,330 FACULTY APPOINTMENT. 1835 01:17:29,330 --> 01:17:31,199 IN LISTENING TO PRESENTATION ON 1836 01:17:31,199 --> 01:17:33,601 THEIR PRIORITIES WE HAVE 1837 01:17:33,601 --> 01:17:37,004 MULTIPLE AREAS OF OVERLAP BUT 1838 01:17:37,004 --> 01:17:39,740 TWO BIGGEST ONES INCLUDE 1839 01:17:39,740 --> 01:17:40,841 INFERTILITY AND ENDOMETRIOSIS, 1840 01:17:40,841 --> 01:17:45,046 THEY ALSO HAVE NATIONAL COHORT 1841 01:17:45,046 --> 01:17:48,049 STUDY OF 100,000 FAMILIES 1842 01:17:48,049 --> 01:17:52,019 CHARACTERIZING EFFECTS OF THE 1843 01:17:52,019 --> 01:17:53,955 EXPOSOME ON CHILD HEALTH. 1844 01:17:53,955 --> 01:17:56,457 THE LAST PART ARE NEW LEADERS AT 1845 01:17:56,457 --> 01:17:58,326 NIH, IN CASE YOU HAVEN'T BEEN 1846 01:17:58,326 --> 01:18:01,062 KEEPING UP WITH THE NEWS. 1847 01:18:01,062 --> 01:18:05,032 TONY FAUCI RETIRED A YEAR AGO. 1848 01:18:05,032 --> 01:18:07,435 AND THE SEARCH WAS HELD. 1849 01:18:07,435 --> 01:18:10,137 AND THE NEW DIRECTOR OF THE 1850 01:18:10,137 --> 01:18:11,138 NATIONAL INSTITUTE OF ALLERGY 1851 01:18:11,138 --> 01:18:14,108 AND INFECTIOUS DISEASE IS DR. 1852 01:18:14,108 --> 01:18:16,277 JEANNE MARRAZZO, WHO WAS 1853 01:18:16,277 --> 01:18:17,578 FORMERLY DIRECTOR OF THE 1854 01:18:17,578 --> 01:18:18,980 DIVISION OF INFECTIOUS DISEASES 1855 01:18:18,980 --> 01:18:21,616 AT THE UNIVERSITY OF ALABAMA 1856 01:18:21,616 --> 01:18:21,916 BIRMINGHAM. 1857 01:18:21,916 --> 01:18:25,353 NOW, WHAT'S EXCITING ABOUT THAT 1858 01:18:25,353 --> 01:18:28,956 FOR US IS HER INTERESTS HAVE 1859 01:18:28,956 --> 01:18:32,493 RELATED TO FEMALE REPRODUCTIVE 1860 01:18:32,493 --> 01:18:33,794 TRACT INFECTIONS AND HORMONAL 1861 01:18:33,794 --> 01:18:34,662 CONTRACEPTION SO THERE ARE GOING 1862 01:18:34,662 --> 01:18:38,065 TO BE NEW AREAS FOR 1863 01:18:38,065 --> 01:18:40,935 COLLABORATION WE HAVEN'T HAD 1864 01:18:40,935 --> 01:18:41,469 PREVIOUSLY. 1865 01:18:41,469 --> 01:18:44,872 WE HAVE A BIG PORTFOLIO IN 1866 01:18:44,872 --> 01:18:46,507 PREVENTION AND TREATMENT OF HIV 1867 01:18:46,507 --> 01:18:46,974 INFECTION. 1868 01:18:46,974 --> 01:18:50,111 THIS IS AN AREA OF EXPERTISE FOR 1869 01:18:50,111 --> 01:18:50,745 HER. 1870 01:18:50,745 --> 01:18:54,815 SHE'S ALSO INTERESTED IN 1871 01:18:54,815 --> 01:18:56,917 BACTERIAL VAGINOSIS, SO WE 1872 01:18:56,917 --> 01:18:58,653 ANTICIPATE MULTIPLE 1873 01:18:58,653 --> 01:19:01,289 COLLABORATIONS WITH NIAID. 1874 01:19:01,289 --> 01:19:02,923 SHE GRADUATED FROM HARVARD, 1875 01:19:02,923 --> 01:19:06,994 JEFFERSON, HAS A MASTER'S IN 1876 01:19:06,994 --> 01:19:07,728 PUBLIC HEALTH, EPIDEMIOLOGY, 1877 01:19:07,728 --> 01:19:10,698 PREVIOUSLY AT THE UNIVERSITY OF 1878 01:19:10,698 --> 01:19:12,433 WASHINGTON BEFORE UNIVERSITY OF 1879 01:19:12,433 --> 01:19:12,967 ALABAMA. 1880 01:19:12,967 --> 01:19:14,669 SHE'S A DELIGHTFUL PERSON AND WE 1881 01:19:14,669 --> 01:19:16,270 REALLY LOOK FORWARD TO WORKING 1882 01:19:16,270 --> 01:19:17,271 WITH HER. 1883 01:19:17,271 --> 01:19:18,239 NEXT SLIDE PLEASE. 1884 01:19:18,239 --> 01:19:20,207 AND THEN TWO PEOPLE THAT I HAVE 1885 01:19:20,207 --> 01:19:23,844 YET TO MEET BUT ARE ON MY 1886 01:19:23,844 --> 01:19:25,913 CALENDAR, THE NIH ASSOCIATE 1887 01:19:25,913 --> 01:19:33,354 DIRECTOR FOR BEHAVIORAL AND 1888 01:19:33,354 --> 01:19:37,391 SOCIAL SCIENCES RESEARCH DR. 1889 01:19:37,391 --> 01:19:38,926 JANE SIMONI FORMERLY FROM 1890 01:19:38,926 --> 01:19:41,362 UNIVERSITY OF WASHINGTON ALSO 1891 01:19:41,362 --> 01:19:45,866 HAS PREVIOUS EXPERIENCE IN HIV 1892 01:19:45,866 --> 01:19:53,174 AND AIDS RESEARCH. 1893 01:19:53,174 --> 01:19:55,943 INTERESTINGLY, DR. KARINA 1894 01:19:55,943 --> 01:19:57,812 WALTERS, DIRECTOR OF TRIBAL 1895 01:19:57,812 --> 01:19:59,213 HEALTH RESEARCH, ALSO FROM 1896 01:19:59,213 --> 01:20:01,282 UNIVERSITY OF WASHINGTON, BOTH 1897 01:20:01,282 --> 01:20:02,850 WERE PROFESSORS THERE AND DR. 1898 01:20:02,850 --> 01:20:04,985 WALTERS IS THE FORMER ASSOCIATE 1899 01:20:04,985 --> 01:20:06,954 DEAN FOR RESEARCH AT THE 1900 01:20:06,954 --> 01:20:09,223 UNIVERSITY OF WASHINGTON SCHOOL 1901 01:20:09,223 --> 01:20:11,292 OF SOCIAL WORK, WITH HER 1902 01:20:11,292 --> 01:20:13,160 TRAINING AT UCLA. 1903 01:20:13,160 --> 01:20:18,199 SO, AGAIN, NEW OPPORTUNITIES TO 1904 01:20:18,199 --> 01:20:18,499 COLLABORATE. 1905 01:20:18,499 --> 01:20:20,401 TRIBAL HEALTH IS AN AREA WHERE 1906 01:20:20,401 --> 01:20:22,703 WE HAVEN'T HAD A MAJOR 1907 01:20:22,703 --> 01:20:26,640 INVESTMENT BUT CLEARLY WITH THE 1908 01:20:26,640 --> 01:20:28,275 HEALTH DISPARITIES IN PREGNANCY, 1909 01:20:28,275 --> 01:20:29,577 CHILD HEALTH, INFANT AND 1910 01:20:29,577 --> 01:20:31,779 MATERNAL MORTALITY AS WELL AS 1911 01:20:31,779 --> 01:20:33,247 DISABILITIES, THIS IS AN AREA IN 1912 01:20:33,247 --> 01:20:35,816 WHICH WE NEED TO DO MORE SO I 1913 01:20:35,816 --> 01:20:40,221 LOOK FORWARD TO MEETING WITH DR. 1914 01:20:40,221 --> 01:20:40,454 WALTERS. 1915 01:20:40,454 --> 01:20:44,925 NEXT SLIDE PLEASE. 1916 01:20:44,925 --> 01:20:48,095 AND LASTLY, WE SADLY ANNOUNCED 1917 01:20:48,095 --> 01:20:50,464 RETIREMENT OF PATTI BRENNAN, WHO 1918 01:20:50,464 --> 01:20:51,198 WAS DIRECTOR OF NATIONAL LIBRARY 1919 01:20:51,198 --> 01:20:52,833 OF MEDICINE FOR SEVEN YEARS. 1920 01:20:52,833 --> 01:20:56,537 SHE RETIRED AT THE END OF 1921 01:20:56,537 --> 01:20:57,037 SEPTEMBER. 1922 01:20:57,037 --> 01:21:00,040 SHE WAS THEIR FIRST NURSE, 1923 01:21:00,040 --> 01:21:02,410 INDUSTRIAL ENGINEER, AND WOMAN 1924 01:21:02,410 --> 01:21:04,645 TO LEAD THE NATIONAL LIBRARY OF 1925 01:21:04,645 --> 01:21:05,713 MEDICINE. 1926 01:21:05,713 --> 01:21:07,281 SHE ACCOMPLISHED AN ENORMOUS 1927 01:21:07,281 --> 01:21:10,184 AMOUNT DURING HER TIME. 1928 01:21:10,184 --> 01:21:12,453 SHE MODERNIZED AND EXPANDED 1929 01:21:12,453 --> 01:21:16,557 PubMed, PUBMED CENTRAL, 1930 01:21:16,557 --> 01:21:20,928 clinicaltrials.gov, GENBANK, 1931 01:21:20,928 --> 01:21:28,602 SEQUENCE SEQUENCE READ ARCHIVE. 1932 01:21:28,602 --> 01:21:30,571 IN THE MEANTIME DR. SHERRY IS 1933 01:21:30,571 --> 01:21:31,772 ACTING DIRECTOR. 1934 01:21:31,772 --> 01:21:35,576 I RECEIVED AN E-MAIL FROM PATTI 1935 01:21:35,576 --> 01:21:37,144 LAST WEEK WHO SAID RETIREMENT IS 1936 01:21:37,144 --> 01:21:38,212 WONDERFUL SO DON'T FEEL BADLY 1937 01:21:38,212 --> 01:21:39,413 FOR HER. 1938 01:21:39,413 --> 01:21:40,514 FEEL BADLY FOR US. 1939 01:21:40,514 --> 01:21:41,615 NEXT SLIDE. 1940 01:21:41,615 --> 01:21:45,119 SO, JUST A REMINDER THAT WE HAD 1941 01:21:45,119 --> 01:21:47,087 HIRING AND I'M SURE THAT THERESA 1942 01:21:47,087 --> 01:21:50,124 WOULD BE HAPPY TO RECEIVE ANY 1943 01:21:50,124 --> 01:21:50,991 INQUIRIES. 1944 01:21:50,991 --> 01:21:53,961 IT'S A GREAT OPPORTUNITY FOR 1945 01:21:53,961 --> 01:21:56,730 YOUR GRADUATES WHO ARE LOOKING 1946 01:21:56,730 --> 01:21:58,933 FOR EITHER MORE TRAINING IN OUR 1947 01:21:58,933 --> 01:22:02,169 INTRAMURAL PROGRAM OR PEOPLE WHO 1948 01:22:02,169 --> 01:22:03,737 ARE LOOKING FOR 1949 01:22:03,737 --> 01:22:04,271 GOVERNMENT-RELATED JOBS. 1950 01:22:04,271 --> 01:22:06,474 AND I THINK THAT'S IT. 1951 01:22:06,474 --> 01:22:08,542 MY NEXT SLIDE IS A THANK YOU, 1952 01:22:08,542 --> 01:22:11,912 AND I'M HAPPY TO ANSWER 1953 01:22:11,912 --> 01:22:12,179 QUESTIONS. 1954 01:22:12,179 --> 01:22:14,548 >> THANK YOU, DR. BIANCHI. 1955 01:22:14,548 --> 01:22:16,851 QUESTIONS HERE OR FROM THE FOLKS 1956 01:22:16,851 --> 01:22:17,585 ON ZOOM? 1957 01:22:17,585 --> 01:22:18,719 >> CAN WE TAKE DOWN THE SLIDES 1958 01:22:18,719 --> 01:22:20,821 SO I CAN SEE PEOPLE? 1959 01:22:20,821 --> 01:22:27,361 THANK YOU. 1960 01:22:27,361 --> 01:22:28,662 DON'T BE SHY. 1961 01:22:28,662 --> 01:22:30,598 YOU CAN ASK ME ANYTHING. 1962 01:22:30,598 --> 01:22:32,266 >> ACTUALLY, THANK YOU FOR THAT 1963 01:22:32,266 --> 01:22:32,933 PRESENTATION. 1964 01:22:32,933 --> 01:22:34,668 THAT WAS REALLY INFORMATIVE. 1965 01:22:34,668 --> 01:22:37,638 I WAS REALLY CURIOUS ABOUT THE 1966 01:22:37,638 --> 01:22:38,606 COLLABORATIONS WITH, YOU KNOW, 1967 01:22:38,606 --> 01:22:42,309 OUTSIDE FOLKS LIKE YOU SAID, 1968 01:22:42,309 --> 01:22:51,752 BILL AND MELINDA GATES AND I WAS 1969 01:22:51,752 --> 01:22:53,153 ACTUALLY WONDERING IN THAT 1970 01:22:53,153 --> 01:23:00,728 COLLABORATION DOES NIH DO A 1971 01:23:00,728 --> 01:23:01,695 GROUP CALL TO BILL AND MELINDA 1972 01:23:01,695 --> 01:23:01,896 GATES? 1973 01:23:01,896 --> 01:23:03,564 HOW DOES THAT WORK? 1974 01:23:03,564 --> 01:23:06,634 I'M CURIOUS WHEN THEY SEND OUT 1975 01:23:06,634 --> 01:23:09,470 THE CALL FOR PARTICIPATION HOW 1976 01:23:09,470 --> 01:23:11,105 DOES NIH SUPPORT THOSE CALLS OR 1977 01:23:11,105 --> 01:23:11,438 DO THEY. 1978 01:23:11,438 --> 01:23:12,740 >> SO THAT'S A GREAT QUESTION. 1979 01:23:12,740 --> 01:23:14,074 THANK YOU. 1980 01:23:14,074 --> 01:23:15,709 THEY DO SEND OUT THE -- THE BILL 1981 01:23:15,709 --> 01:23:18,546 AND MELINDA GATES FOUNDATION 1982 01:23:18,546 --> 01:23:21,181 SENDS OUT REGULAR NOTICES OF 1983 01:23:21,181 --> 01:23:22,416 FUNDING OPPORTUNITIES. 1984 01:23:22,416 --> 01:23:23,584 THOSE ARE THEIR PRIORITIES. 1985 01:23:23,584 --> 01:23:25,452 SO WE DON'T HAVE ANYTHING TO DO 1986 01:23:25,452 --> 01:23:26,987 WITH THOSE. 1987 01:23:26,987 --> 01:23:29,723 WE DON'T FUND THOSE. 1988 01:23:29,723 --> 01:23:33,928 THE COLLABORATION IS REALLY AN 1989 01:23:33,928 --> 01:23:36,864 OPPORTUNITY FOR THEM TO INFORM 1990 01:23:36,864 --> 01:23:38,599 US WHAT THEIR PRIORITIES ARE AND 1991 01:23:38,599 --> 01:23:41,468 FOR US TO INFORM THEM TO INFORM 1992 01:23:41,468 --> 01:23:47,141 OUR PRIORITIES. 1993 01:23:47,141 --> 01:23:49,109 AND THEN TO SEE AREAS WHERE WE 1994 01:23:49,109 --> 01:23:50,544 CAN WORK TOGETHER. 1995 01:23:50,544 --> 01:23:53,914 WE BOTH HAD AN INTEREST, FOR 1996 01:23:53,914 --> 01:23:55,783 EXAMPLE, DECREASING MATERNAL 1997 01:23:55,783 --> 01:23:56,884 DEATHS DUE TO SEPSIS IN LOW- AND 1998 01:23:56,884 --> 01:23:58,752 MIDDLE-INCOME COUNTRIES. 1999 01:23:58,752 --> 01:24:00,421 SO WE HAD OUR INFRASTRUCTURE, 2000 01:24:00,421 --> 01:24:02,890 WHICH IS THE GLOBAL HEALTH 2001 01:24:02,890 --> 01:24:06,827 RESEARCH NETWORK, AND THEY 2002 01:24:06,827 --> 01:24:08,596 WANTED TO USE THAT 2003 01:24:08,596 --> 01:24:08,963 INFRASTRUCTURE. 2004 01:24:08,963 --> 01:24:11,665 AND SO WE THEN NEGOTIATED, TALK 2005 01:24:11,665 --> 01:24:12,967 ABOUT, WELL, WHO IS GOING TO 2006 01:24:12,967 --> 01:24:15,369 SUPPORT WHAT PART OF THAT 2007 01:24:15,369 --> 01:24:15,603 PROJECT. 2008 01:24:15,603 --> 01:24:18,872 AND THE FNIH ACTS AS THE BROKER. 2009 01:24:18,872 --> 01:24:21,175 THAT BEING SAID, WE MEET 2010 01:24:21,175 --> 01:24:23,143 REGULARLY WITH OUR COUNTERPARTS 2011 01:24:23,143 --> 01:24:24,545 ON THE MATERNAL NEONATAL AND 2012 01:24:24,545 --> 01:24:26,814 CHILD HEALTH GROUP, MEET WITH 2013 01:24:26,814 --> 01:24:29,583 THEM SEVERAL TIMES A YEAR. 2014 01:24:29,583 --> 01:24:31,251 AND HAVE PRESENTATIONS ON WHAT 2015 01:24:31,251 --> 01:24:34,521 WE'RE DOING AND THEN TALK 2016 01:24:34,521 --> 01:24:35,489 EXTENSIVELY ABOUT OPPORTUNITIES 2017 01:24:35,489 --> 01:24:38,025 FOR COLLABORATION. 2018 01:24:38,025 --> 01:24:40,661 AND FROM THAT GROW THE 2019 01:24:40,661 --> 01:24:41,261 OPPORTUNITIES. 2020 01:24:41,261 --> 01:24:43,631 SO, IF YOU'RE THINKING ABOUT 2021 01:24:43,631 --> 01:24:45,065 WHERE COULD YOU APPLY, YOU 2022 01:24:45,065 --> 01:24:47,901 SHOULD PAY ATTENTION TO WHAT 2023 01:24:47,901 --> 01:24:49,870 BILL AND MELINDA GATES 2024 01:24:49,870 --> 01:24:51,372 FOUNDATION E-MAILS ARE SENDING 2025 01:24:51,372 --> 01:24:52,940 OUT BECAUSE ULTIMATELY IT COULD 2026 01:24:52,940 --> 01:24:56,210 RESULT IN A COLLABORATION WITH 2027 01:24:56,210 --> 01:24:56,443 NIH. 2028 01:24:56,443 --> 01:24:57,578 BUT THEIR FUNDING IS SEPARATE 2029 01:24:57,578 --> 01:24:59,813 FROM OUR FUNDING WHEN THEY PUT 2030 01:24:59,813 --> 01:25:00,914 OUT THOSE MESSAGES. 2031 01:25:00,914 --> 01:25:04,018 DID THAT ANSWER YOUR QUESTION? 2032 01:25:04,018 --> 01:25:05,452 >> KIND OF. 2033 01:25:05,452 --> 01:25:06,720 I GUESS ONE OF THE SUBTLE THINGS 2034 01:25:06,720 --> 01:25:10,624 I WAS TRYING TO GET AT WAS THE 2035 01:25:10,624 --> 01:25:12,626 IDEA THAT WITH KIND OF THE NEW 2036 01:25:12,626 --> 01:25:18,966 'EM EMPHASIS ON GLOBAL 2037 01:25:18,966 --> 01:25:20,601 REHABILITATION, ALLIANCE, I 2038 01:25:20,601 --> 01:25:21,568 THOUGHT THAT THOSE 2039 01:25:21,568 --> 01:25:22,236 COLLABORATIONS YOU WERE 2040 01:25:22,236 --> 01:25:24,872 DISCUSSING WAS KIND OF MOVING 2041 01:25:24,872 --> 01:25:28,909 NICHD ON THE ALLIANCE OF 2042 01:25:28,909 --> 01:25:31,278 STRENGTHENING OUR, YOU KNOW, OUR 2043 01:25:31,278 --> 01:25:33,981 WORK IN THAT, IN THE DEVELOPING 2044 01:25:33,981 --> 01:25:36,517 SPACES BECAUSE IT'S TRUE WE DO 2045 01:25:36,517 --> 01:25:38,152 HAVE SOME ALLIANCES OR WORK 2046 01:25:38,152 --> 01:25:39,553 THAT'S HAPPENING THERE BUT IT 2047 01:25:39,553 --> 01:25:42,489 DOESN'T FEEL LIKE WE HAVE GIVEN 2048 01:25:42,489 --> 01:25:44,058 IT THE LEVEL ON THE STRATEGIC 2049 01:25:44,058 --> 01:25:45,025 LEVEL PLAN. 2050 01:25:45,025 --> 01:25:47,661 YOU KNOW, THIS IDEA THAT IT'S A 2051 01:25:47,661 --> 01:25:50,631 WORLDWIDE EFFORT AS WELL. 2052 01:25:50,631 --> 01:25:52,466 SO I WONDERED IS THAT SOMETHING 2053 01:25:52,466 --> 01:25:57,304 WE COULD DO AS A PART OF THIS 2054 01:25:57,304 --> 01:26:02,776 STRATEGIC PLAN THAT'S COMING OUT 2055 01:26:02,776 --> 01:26:04,845 NO 2025 TO ACKNOWLEDGE GLOBAL 2056 01:26:04,845 --> 01:26:05,813 REHABILITATION AND THE WORLDWIDE 2057 01:26:05,813 --> 01:26:10,084 SCALE ALSO OF INTEREST AS WELL. 2058 01:26:10,084 --> 01:26:10,984 >> YES, EXCELLENT SUGGESTION, 2059 01:26:10,984 --> 01:26:14,254 VERY MUCH ALIGNED WITH OUR 2060 01:26:14,254 --> 01:26:15,022 THOUGHTS. 2061 01:26:15,022 --> 01:26:17,191 TO DATE WE'RE NOT REALLY 2062 01:26:17,191 --> 01:26:19,727 COVERING IN THE MATERNAL 2063 01:26:19,727 --> 01:26:22,596 NEONATAL AND CHILD HEALTH 2064 01:26:22,596 --> 01:26:24,531 SUBGROUP REHABILITATION, AND THE 2065 01:26:24,531 --> 01:26:27,167 QUESTION IS DEFINITELY SOMETHING 2066 01:26:27,167 --> 01:26:28,902 WE CAN BRING IT AT OUR MEETING 2067 01:26:28,902 --> 01:26:31,638 WITH THEM TO SAY WHERE DOES THIS 2068 01:26:31,638 --> 01:26:32,740 FIT, BECAUSE THEY HAVE I THINK, 2069 01:26:32,740 --> 01:26:36,543 YOU KNOW, THERE'S SOMETHING LIKE 2070 01:26:36,543 --> 01:26:37,978 12 DIFFERENT SUBGROUPS. 2071 01:26:37,978 --> 01:26:41,715 MOST OF WHICH ARE RELATED TO 2072 01:26:41,715 --> 01:26:43,150 INFECTIOUS DISEASE BUT IT IS A 2073 01:26:43,150 --> 01:26:43,817 VERY IMPORTANT QUESTION, 2074 01:26:43,817 --> 01:26:46,520 SOMETHING I WOULD THINK WOULD 2075 01:26:46,520 --> 01:26:48,822 ALIGN WITH THEIR INTERESTS, SO I 2076 01:26:48,822 --> 01:26:50,357 THINK WE COULD BRING IT UP WITH 2077 01:26:50,357 --> 01:26:52,159 THEM AND SAY IS THIS SOMETHING 2078 01:26:52,159 --> 01:26:54,294 WE SHOULD COVER WITHIN THE 2079 01:26:54,294 --> 01:26:55,329 MATERNAL NEONATAL CHILD HEALTH 2080 01:26:55,329 --> 01:26:56,830 SUBGROUP OR SOMETHING THAT IS 2081 01:26:56,830 --> 01:27:01,068 GOING TO BE COVERED ELSEWHERE. 2082 01:27:01,068 --> 01:27:03,937 AND AS YOU KNOW, NCMRR IS NOT 2083 01:27:03,937 --> 01:27:06,106 EXCLUSIVELY NICHD SO IT MIGHT BE 2084 01:27:06,106 --> 01:27:08,175 THAT PERSONNEL FROM NINDS, FOR 2085 01:27:08,175 --> 01:27:09,610 EXAMPLE, WOULD BE MORE INVOLVED 2086 01:27:09,610 --> 01:27:10,811 IN THAT SUBGROUP. 2087 01:27:10,811 --> 01:27:13,981 BUT YES, OVERALL IT'S A VERY 2088 01:27:13,981 --> 01:27:16,517 IMPORTANT AREA, AND I KNOW THAT 2089 01:27:16,517 --> 01:27:18,819 THERESA HAS BEEN VERY ACTIVE 2090 01:27:18,819 --> 01:27:19,119 GLOBALLY. 2091 01:27:19,119 --> 01:27:21,789 I DON'T KNOW IF SHE WANTS TO 2092 01:27:21,789 --> 01:27:25,058 COMMENT ON THIS, BUT IT IS AN 2093 01:27:25,058 --> 01:27:27,861 AREA OF FUTURE RESEARCH FOR US. 2094 01:27:27,861 --> 01:27:30,063 >> THANK YOU, DIANA. 2095 01:27:30,063 --> 01:27:35,135 SO, WE HAVE FUNDED WITH FOGARTY 2096 01:27:35,135 --> 01:27:36,737 TO BUILD UP INFRASTRUCTURE, AND 2097 01:27:36,737 --> 01:27:40,374 WE CAN CERTAINLY DO MORE OF 2098 01:27:40,374 --> 01:27:40,774 THAT. 2099 01:27:40,774 --> 01:27:43,977 AND WE HAVE TRIED TO SUPPORT 2100 01:27:43,977 --> 01:27:46,380 W.H.O. TO DEVELOP THE TOOLS THAT 2101 01:27:46,380 --> 01:27:48,048 THEN GET DISTRIBUTED IN COUNTRY. 2102 01:27:48,048 --> 01:27:52,619 SO HOW CAN WE KIND OF HELP WITH 2103 01:27:52,619 --> 01:27:55,355 THAT HIGHER LEVEL TO START. 2104 01:27:55,355 --> 01:27:57,858 THERE IS -- AND I BELIEVE IT'S 2105 01:27:57,858 --> 01:28:02,062 AT EMORY, A W.H.O. COORDINATING 2106 01:28:02,062 --> 01:28:03,363 CENTER, ON GLOBAL REHAB. 2107 01:28:03,363 --> 01:28:06,099 I'M SURE I'VE GOTTEN THE NAME 2108 01:28:06,099 --> 01:28:06,867 WRONG. 2109 01:28:06,867 --> 01:28:09,169 AND THEY WERE PRESENTING AT 2110 01:28:09,169 --> 01:28:09,503 ACRM. 2111 01:28:09,503 --> 01:28:11,672 SO WE CAN GET MORE INFORMATION 2112 01:28:11,672 --> 01:28:21,148 TO YOU ON THOSE OPPORTUNITIES. 2113 01:28:21,148 --> 01:28:21,815 >> THANK YOU. 2114 01:28:21,815 --> 01:28:22,282 >> FRANCISCO? 2115 01:28:22,282 --> 01:28:23,851 >> YES, GOOD MORNING, DR. 2116 01:28:23,851 --> 01:28:24,184 BIANCHI. 2117 01:28:24,184 --> 01:28:28,655 THANK YOU FOR A WONDERFUL 2118 01:28:28,655 --> 01:28:28,889 UPDATE. 2119 01:28:28,889 --> 01:28:31,625 I JUST HAD A LITTLE COMMENT 2120 01:28:31,625 --> 01:28:34,828 PERHAPS ON THE PROPOSED MISSION 2121 01:28:34,828 --> 01:28:39,132 STATEMENT, WHICH AS YOU MENTION 2122 01:28:39,132 --> 01:28:41,501 NOW READS TO APPLY THAT 2123 01:28:41,501 --> 01:28:44,271 KNOWLEDGE TO OPTIMIZE HEALTH AND 2124 01:28:44,271 --> 01:28:48,742 PREVENT AND REDUCE ILLNESS. 2125 01:28:48,742 --> 01:28:50,811 OF COURSE THE VERY IMPORTANT 2126 01:28:50,811 --> 01:28:54,748 SENTIMENT HERE IS TO ESSENTIALLY 2127 01:28:54,748 --> 01:28:55,649 GET AWAY FROM ABLEISM. 2128 01:28:55,649 --> 01:28:59,586 WHAT I WAS TRYING TO UNDERSTAND 2129 01:28:59,586 --> 01:29:03,357 IS -- SO WE WANT TO OPTIMIZE 2130 01:29:03,357 --> 01:29:05,158 HEALTH, WE IS A GOOD THING, BUT 2131 01:29:05,158 --> 01:29:07,594 WE ALSO WANT TO REDUCE ILLNESS. 2132 01:29:07,594 --> 01:29:11,298 BUT DISABILITY IS NOT AN 2133 01:29:11,298 --> 01:29:14,134 ILLNESS, PER SE. 2134 01:29:14,134 --> 01:29:16,770 AND OPTIMIZED HEALTH IS -- CAN 2135 01:29:16,770 --> 01:29:18,739 READ AT OPTIMIZING YOUR 2136 01:29:18,739 --> 01:29:19,706 PHYSIOLOGY, WHEREAS PERHAPS 2137 01:29:19,706 --> 01:29:23,010 WHERE THIS IS GOING IS 2138 01:29:23,010 --> 01:29:24,211 OPTIMIZING YOUR ABILITY TO 2139 01:29:24,211 --> 01:29:28,148 PARTICIPATE AND HAVE A FRUITFUL 2140 01:29:28,148 --> 01:29:28,515 LIFE. 2141 01:29:28,515 --> 01:29:32,286 SO, I'M SURE YOU'VE GOTTEN 2142 01:29:32,286 --> 01:29:33,387 MULTIPLE COMMENTS FROM THIS BUT 2143 01:29:33,387 --> 01:29:38,358 IT SEEMS TO ME THAT A LITTLE 2144 01:29:38,358 --> 01:29:41,828 SINGLE OR TWO WORDS ABOUT LIFE 2145 01:29:41,828 --> 01:29:42,896 AND PRODUCTIVITY OR SOMETHING 2146 01:29:42,896 --> 01:29:46,300 THAT SPEAKS TO SOMETHING THAT IS 2147 01:29:46,300 --> 01:29:49,269 NOT PHYSIOLOGY OR ILLNESS BUT 2148 01:29:49,269 --> 01:29:56,476 RATHER PARTICIPATION IN THE 2149 01:29:56,476 --> 01:29:57,244 WORLD AND COMMUNITY. 2150 01:29:57,244 --> 01:29:59,313 >> I AGREE. 2151 01:29:59,313 --> 01:30:05,218 THAT'S WHY THE NICHD MISSION 2152 01:30:05,218 --> 01:30:09,589 STATEMENT SAYS "OPTIMIZE 2153 01:30:09,589 --> 01:30:10,657 ABILITIES FOR ALL." 2154 01:30:10,657 --> 01:30:15,495 IN THE INSTITUTE AND CENTER 2155 01:30:15,495 --> 01:30:17,931 DIRECTOR'S MEETINGING IN WHICH I 2156 01:30:17,931 --> 01:30:18,899 PARTICIPATED, I RAISED THE SAME 2157 01:30:18,899 --> 01:30:19,232 ISSUE. 2158 01:30:19,232 --> 01:30:22,302 I DON'T KNOW IF WHAT I SHOWED IN 2159 01:30:22,302 --> 01:30:24,137 THE PROPOSED MISSION STATEMENT 2160 01:30:24,137 --> 01:30:25,672 WILL BE THE ULTIMATE MISSION 2161 01:30:25,672 --> 01:30:29,743 STATEMENT BUT YOUR POINT IS 2162 01:30:29,743 --> 01:30:30,210 EXTREMELY WELL TAKEN. 2163 01:30:30,210 --> 01:30:36,149 >> THANK YOU SO MUCH. 2164 01:30:36,149 --> 01:30:38,251 >> THANKS YOU FOR THE UPDATE. 2165 01:30:38,251 --> 01:30:41,755 I HAVE A COMMENT ON THE 2166 01:30:41,755 --> 01:30:42,522 STRATEGIC PLAN. 2167 01:30:42,522 --> 01:30:50,297 PARTICULARLY ON EXPLORING THE 2168 01:30:50,297 --> 01:30:51,498 ROLE OF THE ENVIRONMENT. 2169 01:30:51,498 --> 01:30:54,568 I THINK THIS IS AN OPPORTUNITY 2170 01:30:54,568 --> 01:30:56,303 TO PARTNER WITH OTHER INSTITUTES 2171 01:30:56,303 --> 01:31:00,340 IN TERMS OF THE NEW EXPOSOME FOR 2172 01:31:00,340 --> 01:31:02,009 EXAMPLE IN TERMS OF 2173 01:31:02,009 --> 01:31:02,776 INTERVENTION. 2174 01:31:02,776 --> 01:31:04,745 BUT ALSO THE OPPORTUNITY TO 2175 01:31:04,745 --> 01:31:09,216 UNDERSTAND HOW WE CAN BRING THE 2176 01:31:09,216 --> 01:31:13,954 ENVIRONMENT TO THE -- HOW CAN WE 2177 01:31:13,954 --> 01:31:17,324 MIMIC THE NORMAL INTERACTION IN 2178 01:31:17,324 --> 01:31:18,425 THE WORLD OUTSIDE WITH FAMILIES, 2179 01:31:18,425 --> 01:31:21,661 SO THIS IS AN IMPORTANT 2180 01:31:21,661 --> 01:31:25,432 OPPORTUNITY FOR TECHNOLOGY A.I., 2181 01:31:25,432 --> 01:31:27,534 YOU KNOW, THAT TYPE OF TECH THAT 2182 01:31:27,534 --> 01:31:28,802 COULD BE USED HERE. 2183 01:31:28,802 --> 01:31:32,239 >> YEAH, I TOTALLY AGREE. 2184 01:31:32,239 --> 01:31:33,407 EXCELLENT POINT. 2185 01:31:33,407 --> 01:31:37,711 AND WE ARE INVOLVED IN A NUMBER 2186 01:31:37,711 --> 01:31:39,112 OF DIFFERENT EFFORTS THAT 2187 01:31:39,112 --> 01:31:42,616 EXAMINE THE TYPICAL ENVIRONMENT 2188 01:31:42,616 --> 01:31:45,819 AND THE INCREASINGLY ATYPICAL 2189 01:31:45,819 --> 01:31:48,088 ENVIRONMENT WITH CLIMATE CHANGE 2190 01:31:48,088 --> 01:31:51,058 AND, YOU KNOW, WEATHER-RELATED 2191 01:31:51,058 --> 01:31:52,092 DISASTERS. 2192 01:31:52,092 --> 01:31:54,761 AND WE ARE WELL REPRESENTED ON 2193 01:31:54,761 --> 01:31:58,498 THE CLIMATE CHANGE AND HUMAN 2194 01:31:58,498 --> 01:32:00,901 HEALTH INITIATIVE, SPECIFICALLY 2195 01:32:00,901 --> 01:32:02,536 LOOKING AT OUR POPULATIONS, 2196 01:32:02,536 --> 01:32:04,404 PEOPLE OF REPRODUCTIVE AGE, 2197 01:32:04,404 --> 01:32:06,473 CHILDREN, PEOPLE WITH 2198 01:32:06,473 --> 01:32:07,140 DISABILITIES. 2199 01:32:07,140 --> 01:32:10,077 AND I COULD SAY THAT WHEN THAT 2200 01:32:10,077 --> 01:32:12,179 COMMITTEE STARTED WORKING, THEY 2201 01:32:12,179 --> 01:32:14,681 JUST NEVER THOUGHT ABOUT HOW 2202 01:32:14,681 --> 01:32:17,651 PEOPLE WHO ARE IN WHEELCHAIRS, 2203 01:32:17,651 --> 01:32:19,953 FOR EXAMPLE, WOULD NAVIGATE 2204 01:32:19,953 --> 01:32:22,989 SEVERE FLOODING OR SOME OTHER 2205 01:32:22,989 --> 01:32:23,723 ENVIRONMENTAL-RELATED DISASTER 2206 01:32:23,723 --> 01:32:26,193 SO I THINK IT'S REALLY A TEAM 2207 01:32:26,193 --> 01:32:28,061 EFFORT WHERE MEMBERS OF OUR 2208 01:32:28,061 --> 01:32:33,066 STAFF ARE SPEAKING UP AT ALL 2209 01:32:33,066 --> 01:32:35,802 LEVELS, AND I REALLY DO BELIEVE 2210 01:32:35,802 --> 01:32:38,105 THAT THIS RESULTED IN PEOPLE 2211 01:32:38,105 --> 01:32:40,407 WITH DISABILITIES BEING INCLUDED 2212 01:32:40,407 --> 01:32:41,174 AS AN UNDERREPRESENTED 2213 01:32:41,174 --> 01:32:41,541 POPULATION. 2214 01:32:41,541 --> 01:32:42,476 THIS IS HUGE. 2215 01:32:42,476 --> 01:32:46,113 I KNOW YOU KNOW THAT BUT IT IS 2216 01:32:46,113 --> 01:32:47,180 REALLY HUGE. 2217 01:32:47,180 --> 01:32:57,691 AND WE SHOULD REALLY CELEBRATE 2218 01:32:59,092 --> 01:32:59,459 THAT ACCOMPLISHMENT. 2219 01:32:59,459 --> 01:33:01,595 >> OTHER QUESTIONS? 2220 01:33:01,595 --> 01:33:03,230 I'M NOT SEEING ANY. 2221 01:33:03,230 --> 01:33:06,500 SO I WILL SAY, AGAIN, THANK YOU 2222 01:33:06,500 --> 01:33:07,434 SO VERY, VERY MUCH. 2223 01:33:07,434 --> 01:33:09,002 >> THANK YOU. 2224 01:33:09,002 --> 01:33:12,272 THANK YOU ALL FOR YOUR EFFORTS 2225 01:33:12,272 --> 01:33:14,441 ON THIS ADVISORY BOARD, AND I 2226 01:33:14,441 --> 01:33:18,612 WILL BE JUMPING BACK AND FORTH 2227 01:33:18,612 --> 01:33:20,180 BETWEEN THE AZITHROMYCIN WORKING 2228 01:33:20,180 --> 01:33:23,116 GROUP AND THEN THERE'S A THIRD 2229 01:33:23,116 --> 01:33:24,217 RADx GROUP THAT'S MEETING 2230 01:33:24,217 --> 01:33:25,418 TODAY TOO. 2231 01:33:25,418 --> 01:33:28,255 SO I WISH I HAD AT LEAST A TWIN. 2232 01:33:28,255 --> 01:33:30,891 BUT I WILL BE IN AND OUT. 2233 01:33:30,891 --> 01:33:33,059 AND HOPE IT'S A VERY, VERY 2234 01:33:33,059 --> 01:33:34,928 PRODUCTIVE MEETING TODAY AND 2235 01:33:34,928 --> 01:33:35,495 TOMORROW. 2236 01:33:35,495 --> 01:33:38,231 AND I'LL SEE YOU IN PERSON NEXT 2237 01:33:38,231 --> 01:33:40,167 TIME. 2238 01:33:40,167 --> 01:33:43,336 >> I JUST WANTED TO ADD THAT I 2239 01:33:43,336 --> 01:33:45,305 APPRECIATE THE CONTEXT OF ALL 2240 01:33:45,305 --> 01:33:45,505 THIS. 2241 01:33:45,505 --> 01:33:48,909 IT SHOWS NICHD IS SUCH A BIG 2242 01:33:48,909 --> 01:33:52,012 TENT AND HELPS UNDERSTAND WHY 2243 01:33:52,012 --> 01:33:56,383 NCMR IS FUNSING IN AN INSTITUTE 2244 01:33:56,383 --> 01:34:00,220 THAT PAYS SO MUCH ATTENTION TO 2245 01:34:00,220 --> 01:34:02,522 THE ENVIRONMENT, BASIC AND 2246 01:34:02,522 --> 01:34:04,257 CLINICAL ISSUES. 2247 01:34:04,257 --> 01:34:07,661 NCMR IS ONE PART, WE GET A FEW 2248 01:34:07,661 --> 01:34:10,297 SHOUT-OUTS IN ASPIRATIONAL 2249 01:34:10,297 --> 01:34:13,366 GOALS, EVEN THEY HAVE A BROADER 2250 01:34:13,366 --> 01:34:13,600 TEXTURE. 2251 01:34:13,600 --> 01:34:16,203 THE FOCUS ON LIMB LOSS IS NOT 2252 01:34:16,203 --> 01:34:18,605 JUST TRYING TO REGROW LIMBS BUT 2253 01:34:18,605 --> 01:34:21,641 TRYING TO INSPIRE BROADER 2254 01:34:21,641 --> 01:34:23,276 STUDIES ON TISSUE FUNCTION, 2255 01:34:23,276 --> 01:34:27,247 STIMULATING TISSUE AND SO ON, 2256 01:34:27,247 --> 01:34:28,782 EVEN THE DISCUSSION OF PEDIATRIC 2257 01:34:28,782 --> 01:34:29,849 PRECISION MEDICINE IS VERY 2258 01:34:29,849 --> 01:34:31,952 IMPORTANT TO SAY WHAT WORKS FOR 2259 01:34:31,952 --> 01:34:36,756 KIDS, WHAT DOESN'T WORK, AND 2260 01:34:36,756 --> 01:34:39,593 OPTIMIZE WHICH BENEFIT MOST FROM 2261 01:34:39,593 --> 01:34:44,397 WHICH THERAPIES FROM HELPING 2262 01:34:44,397 --> 01:34:46,633 PEOPLE NOT WASTE TIME AND TRYING 2263 01:34:46,633 --> 01:34:49,135 TO IDENTIFY WHAT'S WORKING AND 2264 01:34:49,135 --> 01:34:50,870 FOLLOWING EVEN IN ADULTS SO WE 2265 01:34:50,870 --> 01:34:54,174 APPRECIATE BEING PART OF THAT 2266 01:34:54,174 --> 01:34:55,575 FABRIC OF NICHD AND CONTRIBUTING 2267 01:34:55,575 --> 01:34:58,645 BACK AND FORTH WITH THE 2268 01:34:58,645 --> 01:34:59,045 DISCUSSION. 2269 01:34:59,045 --> 01:35:01,948 >> THANK YOU, RALPH, FOR THOSE 2270 01:35:01,948 --> 01:35:02,249 COMMENTS. 2271 01:35:02,249 --> 01:35:04,985 YEAH, IT IS -- WE ARE VERY MUCH 2272 01:35:04,985 --> 01:35:07,721 EMBEDDED IN THE OVERALL FABRIC 2273 01:35:07,721 --> 01:35:09,756 OF NIH, AND I THINK THAT OUR 2274 01:35:09,756 --> 01:35:11,992 STAFF ARE ABLE TO SEE THE 2275 01:35:11,992 --> 01:35:14,094 CONNECTIONS IN A WAY THAT 2276 01:35:14,094 --> 01:35:18,365 PERHAPS IS NOT TRUE IN SOME OF 2277 01:35:18,365 --> 01:35:20,867 THE MORE SILOED INSTITUTES. 2278 01:35:20,867 --> 01:35:22,869 WE COVER HUMAN DEVELOPMENT, 2279 01:35:22,869 --> 01:35:25,472 WHICH IS INCREDIBLY BROAD. 2280 01:35:25,472 --> 01:35:28,008 AND ALTHOUGH OUR NAME IS CHILD 2281 01:35:28,008 --> 01:35:29,976 HEALTH, IT'S A VERY LIMITED 2282 01:35:29,976 --> 01:35:32,912 FOCUS ON WHAT WE REALLY DO, AND 2283 01:35:32,912 --> 01:35:33,780 THAT'S ANOTHER KIND OF 2284 01:35:33,780 --> 01:35:36,516 INTERESTING ISSUE THAT WE'RE 2285 01:35:36,516 --> 01:35:37,951 TRYING TO ADDRESS. 2286 01:35:37,951 --> 01:35:40,887 BUT I DO WANT EVERYONE ON THE 2287 01:35:40,887 --> 01:35:43,089 BOARD TO RECOGNIZE HOW EMBEDDED 2288 01:35:43,089 --> 01:35:47,060 WE ARE IN SOME OF THE MAJOR 2289 01:35:47,060 --> 01:35:48,061 NIH-WIDE INITIATIVES, 2290 01:35:48,061 --> 01:35:51,431 REPRESENTING OUR POPULATIONS, 2291 01:35:51,431 --> 01:35:53,199 BRINGING OUR PERSPECTIVE, 2292 01:35:53,199 --> 01:35:55,402 BRINGING KNOWLEDGE AND SUBJECT 2293 01:35:55,402 --> 01:35:56,936 MATTER EXPERTISE. 2294 01:35:56,936 --> 01:35:59,773 SO IT'S NOT JUST PEDIATRICS, FOR 2295 01:35:59,773 --> 01:36:00,340 EXAMPLE. 2296 01:36:00,340 --> 01:36:02,842 SO THANKS, RALPH, FOR THAT 2297 01:36:02,842 --> 01:36:10,517 COMMENT. 2298 01:36:10,517 --> 01:36:13,053 >> THANK YOU. 2299 01:36:13,053 --> 01:36:19,726 WE'LL TAKE A 10-MINUTE BREAK 2300 01:36:19,726 --> 01:36:27,033 WE'LL TURN THE MICROPHONE BACK OVER TO 2301 01:36:27,033 --> 01:36:30,203 THERESA TALKING THAT THE NIH 2302 01:36:30,203 --> 01:36:33,906 RESEARCH PLAN, PLAN FOR 2303 01:36:33,906 --> 01:36:34,874 REHABILITATION RESEARCH. 2304 01:36:34,874 --> 01:36:37,009 >> I'M GLAD WE SWAPPED THE FIRST 2305 01:36:37,009 --> 01:36:37,677 PRESENTATION. 2306 01:36:37,677 --> 01:36:41,047 OTHERWISE YOU WOULD HAVE TO HEAR 2307 01:36:41,047 --> 01:36:46,519 ME A LOT, AND I SOUND A LOT, IN 2308 01:36:46,519 --> 01:36:48,821 MY OWN EARS, SO I JUST WANT TO 2309 01:36:48,821 --> 01:36:54,961 PUT A LITTLE BUG OUT THERE THAT 2310 01:36:54,961 --> 01:36:58,831 LATER TOMORROW WE'LL ASK FOR 2311 01:36:58,831 --> 01:36:59,999 TOPICS FOR FUTURE MEETINGS. 2312 01:36:59,999 --> 01:37:08,407 I'D REALLY LIKE YOUR FEEDBACK ON 2313 01:37:08,407 --> 01:37:08,641 FORMAT. 2314 01:37:08,641 --> 01:37:09,876 BEFORE TIMES WE DID THESE 2315 01:37:09,876 --> 01:37:11,811 MEETINGS A CERTAIN WAY. 2316 01:37:11,811 --> 01:37:14,881 WE PIVOTED DURING THE PANDEMIC. 2317 01:37:14,881 --> 01:37:16,983 AND NOW WE'RE IN NEW TIMES I 2318 01:37:16,983 --> 01:37:18,384 WOULD SAY. 2319 01:37:18,384 --> 01:37:20,486 WE DIDN'T DO HYBRID CERTAINLY 2320 01:37:20,486 --> 01:37:26,292 BEFORE, SO I WOULD LIKE YOUR 2321 01:37:26,292 --> 01:37:27,827 FEEDBACK ON FORMAT, LENGTH OF 2322 01:37:27,827 --> 01:37:28,294 MEETINGS. 2323 01:37:28,294 --> 01:37:32,732 I'LL HIT YOU UP FOR WORK IN THIS 2324 01:37:32,732 --> 01:37:33,065 PRESENTATION. 2325 01:37:33,065 --> 01:37:35,034 I WANT TO BE RESPECTFUL OF 2326 01:37:35,034 --> 01:37:36,803 PEOPLE'S TIMES, WHAT YOU ALL 2327 01:37:36,803 --> 01:37:37,003 THINK. 2328 01:37:37,003 --> 01:37:46,646 KEEP THAT IN THE BACK OF YOUR 2329 01:37:46,646 --> 01:37:47,079 MIND. 2330 01:37:47,079 --> 01:37:47,280 OKAY. 2331 01:37:47,280 --> 01:37:48,948 WE'RE GOING TO TALK A LITTLE BIT 2332 01:37:48,948 --> 01:37:50,383 ABOUT THE EXISTING RESEARCH 2333 01:37:50,383 --> 01:37:52,652 PLAN, KIND OF SOME BACKGROUND. 2334 01:37:52,652 --> 01:37:54,287 IT WOULDN'T BE A FEDERAL TALK IF 2335 01:37:54,287 --> 01:37:58,457 I DIDN'T TALK ABOUT SOME LAWS 2336 01:37:58,457 --> 01:38:00,193 AND LEGISLATION. 2337 01:38:00,193 --> 01:38:02,161 AND THEN MY VISION FOR WHERE 2338 01:38:02,161 --> 01:38:06,666 WE'RE GOING FORWARD, WHERE I 2339 01:38:06,666 --> 01:38:09,869 NEED YOUR HELP, TO BE FRANK. 2340 01:38:09,869 --> 01:38:10,736 NEXT SLIDE. 2341 01:38:10,736 --> 01:38:20,880 SO WE'RE GOING TO TRAVEL BACK IN 2342 01:38:20,880 --> 01:38:21,681 TIME TO 2016. 2343 01:38:21,681 --> 01:38:23,316 OUT OF ORDER BUT THESE ALL 2344 01:38:23,316 --> 01:38:24,183 HAPPENED IN 2016. 2345 01:38:24,183 --> 01:38:26,719 IF YOU WERE PAYING ATTENTION TO 2346 01:38:26,719 --> 01:38:29,856 DR. BIANCHI'S TALK SHE MENTIONED 2347 01:38:29,856 --> 01:38:31,724 THE 21ST CENTURY CURES ACT, AND 2348 01:38:31,724 --> 01:38:33,759 AS PART OF THAT EVERY NIH 2349 01:38:33,759 --> 01:38:37,897 INSTITUTE HAS TO DO A STRATEGIC 2350 01:38:37,897 --> 01:38:39,098 PLAN EVERY FIVE YEARS. 2351 01:38:39,098 --> 01:38:40,600 WE'RE NOT AN INSTITUTE SO WE 2352 01:38:40,600 --> 01:38:41,801 DON'T HAVE TO DO A STRATEGIC 2353 01:38:41,801 --> 01:38:43,336 PLAN EVERY FIVE YEARS. 2354 01:38:43,336 --> 01:38:47,406 WHAT WE GET TO DO IS A RESEARCH 2355 01:38:47,406 --> 01:38:50,243 PLAN EVERY FIVE YEARS. 2356 01:38:50,243 --> 01:38:51,677 WE WERE ESTABLISHED IN 1990, ON 2357 01:38:51,677 --> 01:38:56,682 THE LEFT SIDE IS THE ORIGINAL 2358 01:38:56,682 --> 01:38:58,217 LEGISLATION, OUR ORIGINAL 2359 01:38:58,217 --> 01:38:59,085 AUTHORIZING LANGUAGE. 2360 01:38:59,085 --> 01:39:01,487 IT TALKED ABOUT UPDATING YOUR 2361 01:39:01,487 --> 01:39:04,790 RESEARCH PLAN AS APPROPRIATE, 2362 01:39:04,790 --> 01:39:06,759 AND NOW WE HAVE LAWS THAT SAY IT 2363 01:39:06,759 --> 01:39:08,628 HAS TO BE NOT LESS THAN EVERY 2364 01:39:08,628 --> 01:39:09,795 FIVE YEARS WHICH MEANS EVERY 2365 01:39:09,795 --> 01:39:10,596 FIVE YEARS. 2366 01:39:10,596 --> 01:39:15,201 I HAD TO GOOGLE WHAT THAT MEANT. 2367 01:39:15,201 --> 01:39:16,035 I DON'T SPEAK LEGAL. 2368 01:39:16,035 --> 01:39:18,471 WE HAVE TO DO THINGS LIKE GIVE 2369 01:39:18,471 --> 01:39:19,906 REPORTS LIKE THE ONE I'M DOING 2370 01:39:19,906 --> 01:39:21,274 NOW TO YOU ALL. 2371 01:39:21,274 --> 01:39:25,244 WE ALSO NEED TO DO THAT WITH OUR 2372 01:39:25,244 --> 01:39:26,245 COORDINATING COMMITTEE. 2373 01:39:26,245 --> 01:39:28,748 WE'RE A GROUP OF PROGRAM STAFF 2374 01:39:28,748 --> 01:39:39,158 AT NIH WHO MEET MONTHLY. 2375 01:39:41,961 --> 01:39:43,896 WE TALK ABOUT RESEARCH AT NIH. 2376 01:39:43,896 --> 01:39:45,464 THESE ARE SOME MORE OF THE 2377 01:39:45,464 --> 01:39:49,802 THINGS WE HAVE TO DO INCLUDING 2378 01:39:49,802 --> 01:39:50,770 PERIODICALLY HOST SCIENTIFIC 2379 01:39:50,770 --> 01:40:00,513 WORKSHOPS, AND THESE ARE 2380 01:40:00,513 --> 01:40:00,780 N IH-WIDE. 2381 01:40:00,780 --> 01:40:02,381 WITH THAT, A LITTLE BIT OF 2382 01:40:02,381 --> 01:40:03,683 DIRECTION FROM CONGRESS, NEXT 2383 01:40:03,683 --> 01:40:07,186 SLIDE, WE HAD OUR FIRST IN A 2384 01:40:07,186 --> 01:40:11,924 WHILE NIH REHAB CONFERENCE IN 2385 01:40:11,924 --> 01:40:13,359 MAY OF 2016. 2386 01:40:13,359 --> 01:40:23,903 THIS WAS ALISON CERNICH'S COMING 2387 01:40:26,839 --> 01:40:27,306 OUT PARTY. 2388 01:40:27,306 --> 01:40:29,208 THERE'S FRANCIS COLLINS, WHO WAS 2389 01:40:29,208 --> 01:40:34,847 DIRECTOR OF NIH AT THE TIME AND 2390 01:40:34,847 --> 01:40:41,320 A YOUTH GROUP OF PEOPLE WITH 2391 01:40:41,320 --> 01:40:42,855 DISABILITIES PERFORMING ON STAGE 2392 01:40:42,855 --> 01:40:44,490 TO GET US STARTED. 2393 01:40:44,490 --> 01:40:46,225 WE HAD 475 PEOPLE IN THE ROOM, 2394 01:40:46,225 --> 01:40:48,427 SO TO SPEAK, AND ALSO OFFERED A 2395 01:40:48,427 --> 01:40:50,629 VIDEOCAST THAT HAD A COUPLE 2396 01:40:50,629 --> 01:40:52,031 HUNDRED PEOPLE LIVE AND PEOPLE 2397 01:40:52,031 --> 01:40:55,634 WENT BACK AND WATCHED LATER ON. 2398 01:40:55,634 --> 01:41:01,340 SO, THIS IS SOMEWHERE IN THE 500 2399 01:41:01,340 --> 01:41:03,943 TO 700 PEOPLE WE WERE REACHING, 2400 01:41:03,943 --> 01:41:05,745 SO KEEP THAT IN THE BACK OF YOUR 2401 01:41:05,745 --> 01:41:08,481 MIND. 2402 01:41:08,481 --> 01:41:10,149 FROM THAT, NEXT SLIDE, WE 2403 01:41:10,149 --> 01:41:11,884 LAUNCHED OUR FIRST RESEARCH PLAN 2404 01:41:11,884 --> 01:41:12,752 SINCE 1993. 2405 01:41:12,752 --> 01:41:14,854 SO THIS WAS PRETTY MUCH A FRESH 2406 01:41:14,854 --> 01:41:17,590 START, RIGHT? 2407 01:41:17,590 --> 01:41:22,094 AND WE HAD SIX THEMES, AND THIS 2408 01:41:22,094 --> 01:41:23,829 DOCUMENT HAS A LOT OF IDEAS IN 2409 01:41:23,829 --> 01:41:24,263 IT. 2410 01:41:24,263 --> 01:41:27,233 THESE ARE ALL THE THINGS WE 2411 01:41:27,233 --> 01:41:32,905 COULD DO UNDER THESE THEMES. 2412 01:41:32,905 --> 01:41:33,906 NEXT SLIDE. 2413 01:41:33,906 --> 01:41:35,107 WE STARTED TRACKING DATA. 2414 01:41:35,107 --> 01:41:37,043 SO FOR SOME WHO HAVE BEEN HERE 2415 01:41:37,043 --> 01:41:39,145 FOR A WHILE YOU'VE SEEN SLIDES 2416 01:41:39,145 --> 01:41:41,247 LIKE THIS WHERE WE TALK ABOUT 2417 01:41:41,247 --> 01:41:46,585 THIS IS WHERE WE WERE BEFORE, IN 2418 01:41:46,585 --> 01:41:48,587 2015, AND THIS IS HOW THE 2419 01:41:48,587 --> 01:41:50,589 REHABILITATION PORTFOLIO AT NIH 2420 01:41:50,589 --> 01:41:57,263 IS CHANGING AND GROWING AND WE 2421 01:41:57,263 --> 01:41:59,665 MAP IT TO THE THEMES NUMBER OF 2422 01:41:59,665 --> 01:42:05,037 GRANTS, DOLLARS SPENT, AND YOU 2423 01:42:05,037 --> 01:42:05,805 CAN SEE THERE'S CERTAINLY 2424 01:42:05,805 --> 01:42:07,506 DIFFERENCES IN AREAS OF THE 2425 01:42:07,506 --> 01:42:09,308 RESEARCH PLAN, HOW THEY ARE 2426 01:42:09,308 --> 01:42:10,943 BEING COVERED. 2427 01:42:10,943 --> 01:42:12,812 MOST IS INVESTIGATOR INITIATED. 2428 01:42:12,812 --> 01:42:18,384 AND WE'LL TALK MORE ABOUT 2429 01:42:18,384 --> 01:42:19,018 TARGETED DOLLARS LATER. 2430 01:42:19,018 --> 01:42:21,220 THIS IS PART OF MY REPORT TO YOU 2431 01:42:21,220 --> 01:42:24,723 HOW THE PLAN IS GOING. 2432 01:42:24,723 --> 01:42:25,291 NEXT SLIDE. 2433 01:42:25,291 --> 01:42:32,064 IN 2020, THAT WAS OUR FIVE 2434 01:42:32,064 --> 01:42:33,399 YEARS, AND I WAS ACTING DIRECTOR 2435 01:42:33,399 --> 01:42:36,102 AT THE TIME AND IT WAS 2020, AND 2436 01:42:36,102 --> 01:42:42,575 THIS IS NOT A GREAT TIME TO BE 2437 01:42:42,575 --> 01:42:46,412 PUTTING OUT A BIG CONFERENCE AND 2438 01:42:46,412 --> 01:42:48,347 REFRESHING A RESEARCH PLAN. 2439 01:42:48,347 --> 01:42:51,317 AND WE HAD GREAT COLLEAGUES AT 2440 01:42:51,317 --> 01:42:57,256 NIH WHO CAME TOGETHER TO HOST 2441 01:42:57,256 --> 01:42:57,790 THIS MEETING. 2442 01:42:57,790 --> 01:42:59,859 YOU KNOW, IN MAY AND JUNE OF 2443 01:42:59,859 --> 01:43:01,293 2020 WE THOUGHT WE COULD STILL 2444 01:43:01,293 --> 01:43:03,462 DO IT IN PERSON MAYBE, IN 2445 01:43:03,462 --> 01:43:04,630 OCTOBER. 2446 01:43:04,630 --> 01:43:06,765 WE REALLY DIDN'T KNOW AT THE 2447 01:43:06,765 --> 01:43:07,099 TIME. 2448 01:43:07,099 --> 01:43:10,369 BUT WE DID USE ONE OF THESE 2449 01:43:10,369 --> 01:43:14,740 FANCY ONLINE WORKSHOP CONFERENCE 2450 01:43:14,740 --> 01:43:17,176 PLATFORMS AND HERE ARE SOME 2451 01:43:17,176 --> 01:43:17,409 NUMBERS. 2452 01:43:17,409 --> 01:43:20,880 OVER 1200 PEOPLE, WERE ABLE TO 2453 01:43:20,880 --> 01:43:25,684 DO 90 POSTERS, EXHIBIT BOOTHS, 2454 01:43:25,684 --> 01:43:27,753 AND WE GOT MORE INCLUSION, I 2455 01:43:27,753 --> 01:43:31,957 WOULD SAY, FROM DOING THIS TYPE 2456 01:43:31,957 --> 01:43:32,491 OF FORMAT. 2457 01:43:32,491 --> 01:43:34,026 KEEP IN MIND THE OPTIONS WERE 2458 01:43:34,026 --> 01:43:36,095 DON'T DO A MEETING OR DO A 2459 01:43:36,095 --> 01:43:43,869 MEETING IN A VIRTUAL 2460 01:43:43,869 --> 01:43:44,370 ENVIRONMENT. 2461 01:43:44,370 --> 01:43:45,304 HERE'S SOME FEEDBACK, NEXT 2462 01:43:45,304 --> 01:43:46,739 SLIDE. 2463 01:43:46,739 --> 01:43:49,441 REMEMBER, THIS WAS IN 2020, WHEN 2464 01:43:49,441 --> 01:43:53,212 AT LEAST TO ME AN ONLINE 2465 01:43:53,212 --> 01:43:54,513 CONFERENCE WAS VERY NOVEL. 2466 01:43:54,513 --> 01:43:55,948 IT WAS NEW TO ME AT THE TIME. 2467 01:43:55,948 --> 01:43:58,250 SO SOME OF THE FEEDBACK WE GOT 2468 01:43:58,250 --> 01:44:00,152 THEY REALLY LIKED THE CONFERENCE 2469 01:44:00,152 --> 01:44:01,954 PLATFORM, THAT IT WAS KIND OF 2470 01:44:01,954 --> 01:44:06,025 INTERESTING AND NEW AND NOVEL, 2471 01:44:06,025 --> 01:44:10,696 GREAT SPEAKERS, GOOD VIRTUAL 2472 01:44:10,696 --> 01:44:11,130 EXPERIENCE. 2473 01:44:11,130 --> 01:44:14,099 BUT WE DID GET FEEDBACK THAT 2474 01:44:14,099 --> 01:44:19,572 PEOPLE REALLY MISSED THE 2475 01:44:19,572 --> 01:44:22,074 PERSONAL INTERACTIONS, AND THAT 2476 01:44:22,074 --> 01:44:22,975 IN-PERSON ELEMENT. 2477 01:44:22,975 --> 01:44:24,843 AND, YOU KNOW, THE TECHNOLOGY IS 2478 01:44:24,843 --> 01:44:30,416 NOT PERFECT, THERE WERE SOME 2479 01:44:30,416 --> 01:44:35,888 ISSUES WITH THE PLATFORM AT 2480 01:44:35,888 --> 01:44:36,322 TIMES. 2481 01:44:36,322 --> 01:44:38,224 I'M PRESENTING SO WE CAN THINK 2482 01:44:38,224 --> 01:44:38,924 ABOUT THE NEXT CONFERENCE, I 2483 01:44:38,924 --> 01:44:41,393 DON'T KNOW HOW MUCH WE CAN TAKE 2484 01:44:41,393 --> 01:44:47,399 FROM THIS BUT I'M PUTTING THAT 2485 01:44:47,399 --> 01:44:48,167 OUT THERE. 2486 01:44:48,167 --> 01:44:48,701 NEXT. 2487 01:44:48,701 --> 01:44:50,769 WE FOLLOWED THAT WORKSHOP WITH 2488 01:44:50,769 --> 01:44:54,206 OUR 21 PLAN AND HAD A WONDERFUL 2489 01:44:54,206 --> 01:44:58,477 WORKING GROUP, BOTH OF NIH STAFF 2490 01:44:58,477 --> 01:44:59,912 AND YOU ALL. 2491 01:44:59,912 --> 01:45:03,482 THE GROUP DECIDED TO KEEP THE 2492 01:45:03,482 --> 01:45:05,818 SAME THEMES. 2493 01:45:05,818 --> 01:45:08,988 WE WERE -- MOST RESEARCH PLANS 2494 01:45:08,988 --> 01:45:10,322 AND STRATEGIC PLANS TEND TO BE 2495 01:45:10,322 --> 01:45:11,190 ABOUT TEN YEARS. 2496 01:45:11,190 --> 01:45:14,159 IF YOU NOTICED IN DR. BIANCHI'S 2497 01:45:14,159 --> 01:45:15,261 CONVERSATION THIS MORNING SHE 2498 01:45:15,261 --> 01:45:17,329 TALKED ABOUT HOW THEY WERE 2499 01:45:17,329 --> 01:45:18,464 REFRESHING THE NICHD STRATEGIC 2500 01:45:18,464 --> 01:45:19,098 PLAN. 2501 01:45:19,098 --> 01:45:26,705 SO A LOT OF THOSE OVERARCHING 2502 01:45:26,705 --> 01:45:28,507 THEMES ARE LIKELY TO STAY THE 2503 01:45:28,507 --> 01:45:29,275 SAME. 2504 01:45:29,275 --> 01:45:30,676 WE HAVE A SIMILAR APPROACH, TO 2505 01:45:30,676 --> 01:45:32,578 KEEP THE SAME THINGS, YES, BUT 2506 01:45:32,578 --> 01:45:35,514 WE CHANGED SOME OF THE BULLETS 2507 01:45:35,514 --> 01:45:37,783 UNDERNEATH THEM TO BE MORE 2508 01:45:37,783 --> 01:45:39,318 ACTION ORIENTED, TO BE MORE 2509 01:45:39,318 --> 01:45:41,086 INCLUSIVE OF THE PERSON WITH THE 2510 01:45:41,086 --> 01:45:46,225 DISABILITY AND THEIR PREFERENCE, 2511 01:45:46,225 --> 01:45:49,295 EXPANDING THE LIFESPAN, MOVING 2512 01:45:49,295 --> 01:45:50,596 TOWARDS OPEN SOURCE DATA SHARING 2513 01:45:50,596 --> 01:45:53,666 AND COMMITMENT TO INDIVIDUAL 2514 01:45:53,666 --> 01:45:55,200 TRAINING AWARDS. 2515 01:45:55,200 --> 01:45:57,403 AND THEN AS WE ROLLED THIS OUT 2516 01:45:57,403 --> 01:45:58,637 WE TALKED ABOUT, YOU KNOW, THE 2517 01:45:58,637 --> 01:46:03,676 PLAN IS ONLY AS USEFUL AS THE 2518 01:46:03,676 --> 01:46:05,611 COMMUNITY MAKES IT SO WE CAN'T 2519 01:46:05,611 --> 01:46:07,146 PUT A FUNDING OPPORTUNITY 2520 01:46:07,146 --> 01:46:07,780 ANNOUNCEMENT OUT FOR EVERY 2521 01:46:07,780 --> 01:46:08,447 BULLET IN HERE. 2522 01:46:08,447 --> 01:46:10,716 SO PART OF THIS IS TO INFORM THE 2523 01:46:10,716 --> 01:46:14,153 FIELD SO THAT THEY CAN EMBRACE 2524 01:46:14,153 --> 01:46:14,386 IT. 2525 01:46:14,386 --> 01:46:18,891 AND COME INTO THE 2526 01:46:18,891 --> 01:46:22,361 INVESTIGATOR-INITIATED POOL. 2527 01:46:22,361 --> 01:46:22,695 OKAY. 2528 01:46:22,695 --> 01:46:24,096 NEXT SLIDE. 2529 01:46:24,096 --> 01:46:25,664 HERE IS SOME TOP LEVEL DOLLARS 2530 01:46:25,664 --> 01:46:29,802 AND INFORMATION ABOUT OUR REHAB 2531 01:46:29,802 --> 01:46:30,069 PORTFOLIO. 2532 01:46:30,069 --> 01:46:33,205 SO, THESE DATA COME FROM NIH 2533 01:46:33,205 --> 01:46:36,041 REPORTER, REPORT, EXCUSE ME, WE 2534 01:46:36,041 --> 01:46:45,217 HAVE A CATEGORY OF RCDC RESEARCH 2535 01:46:45,217 --> 01:46:46,985 CATEGORY DISEASE CONDITION. 2536 01:46:46,985 --> 01:46:47,853 THANK YOU. 2537 01:46:47,853 --> 01:46:51,690 AND WE HAVE ONLY LOOKED AT THE 2538 01:46:51,690 --> 01:46:53,759 EXTRAMURAL PORTION SINCE NCMRR 2539 01:46:53,759 --> 01:46:55,194 IS AN EXTRAMURAL FUNDER, SO IF 2540 01:46:55,194 --> 01:46:57,262 YOU GO TO THE CATEGORIES AND YOU 2541 01:46:57,262 --> 01:47:02,968 LOOK UP REHAB YOU'LL SEE THAT 2542 01:47:02,968 --> 01:47:06,038 THERE'S ANOTHER 5%+ DOLLARS 2543 01:47:06,038 --> 01:47:07,106 ADDED FROM THE INTRAMURAL 2544 01:47:07,106 --> 01:47:08,207 RESEARCH AT NIH. 2545 01:47:08,207 --> 01:47:10,509 I LOOK AT THIS AND I'M 2546 01:47:10,509 --> 01:47:12,144 ECSTATICS, WHEN I THINK OF WHERE 2547 01:47:12,144 --> 01:47:15,848 WE WERE IN 2015, AND HOW WE'VE 2548 01:47:15,848 --> 01:47:16,048 GROWN. 2549 01:47:16,048 --> 01:47:19,852 WE DON'T HAVE 23 DATA YET. 2550 01:47:19,852 --> 01:47:23,155 BUT WE'RE LOOKING AT 40+ PER 2551 01:47:23,155 --> 01:47:23,822 CENT GROWTH. 2552 01:47:23,822 --> 01:47:26,225 AND THIS IS YOU GUYS. 2553 01:47:26,225 --> 01:47:29,261 THIS IS THE FIELD PUTTING IN 2554 01:47:29,261 --> 01:47:30,696 GOOD APPLICATIONS, PUTTING IN A 2555 01:47:30,696 --> 01:47:33,766 LOT OF GOOD APPLICATIONS, AND 2556 01:47:33,766 --> 01:47:36,835 GETTING FUNDED THROUGH THE PEER 2557 01:47:36,835 --> 01:47:37,603 REVIEW SYSTEM. 2558 01:47:37,603 --> 01:47:39,872 THIS ISN'T NIH A PRIORI SAYING 2559 01:47:39,872 --> 01:47:41,540 THIS IS THE AMOUNT OF MONEY 2560 01:47:41,540 --> 01:47:42,841 WE'RE GOING TO SPEND IN THIS 2561 01:47:42,841 --> 01:47:43,041 AREA. 2562 01:47:43,041 --> 01:47:44,576 SO THIS IS A TESTAMENT TO 2563 01:47:44,576 --> 01:47:48,614 EVERYTHING THAT YOU ALL ARE 2564 01:47:48,614 --> 01:47:48,981 DOING. 2565 01:47:48,981 --> 01:47:51,817 AND, YOU KNOW, I AM QUITE HAPPY 2566 01:47:51,817 --> 01:47:54,319 ABOUT IT. 2567 01:47:54,319 --> 01:47:56,088 NEXT SLIDE. 2568 01:47:56,088 --> 01:47:59,491 SO, OUR TOTAL NUMBER IS $934 2569 01:47:59,491 --> 01:48:03,529 MILLION, THAT TAKES INTO ACCOUNT 2570 01:48:03,529 --> 01:48:05,264 THE INTRAMURAL BUDGET AS WELL. 2571 01:48:05,264 --> 01:48:07,599 YOU CAN SEE WE'RE MOSTLY FUNDING 2572 01:48:07,599 --> 01:48:10,002 RESEARCH PROJECT GRANTS. 2573 01:48:10,002 --> 01:48:14,273 WE DO HAVE THIS OVERINVESTMENT 2574 01:48:14,273 --> 01:48:18,644 IN SBIR/STTR, WHICH WOULD BE 2575 01:48:18,644 --> 01:48:20,379 AVERAGES AT NIH IS AROUND 3 2576 01:48:20,379 --> 01:48:20,846 1/2%. 2577 01:48:20,846 --> 01:48:24,983 I WANT TO ACKNOWLEDGE THE WORK 2578 01:48:24,983 --> 01:48:26,185 NINDS IS DOING WITH THE BIGGEST 2579 01:48:26,185 --> 01:48:27,219 DOLLAR AMOUNT. 2580 01:48:27,219 --> 01:48:29,755 SOME WILL BE GRANTS MANAGED BY 2581 01:48:29,755 --> 01:48:30,789 NINDS THROUGH THE BRAIN 2582 01:48:30,789 --> 01:48:33,325 INITIATIVE AND "HEAL" AND THINGS 2583 01:48:33,325 --> 01:48:35,961 LIKE THAT. 2584 01:48:35,961 --> 01:48:40,199 AND ALSO NIA AND NIDCD. 2585 01:48:40,199 --> 01:48:43,035 THIS IS ALSO PART OF THE -- WHEN 2586 01:48:43,035 --> 01:48:44,803 I TALK ABOUT COLLABORATION, WE 2587 01:48:44,803 --> 01:48:46,772 REALLY MEAN IT, BECAUSE WE HAVE 2588 01:48:46,772 --> 01:48:47,773 A GREAT BUDGET. 2589 01:48:47,773 --> 01:48:49,842 BUT I DON'T HAVE A 2590 01:48:49,842 --> 01:48:50,309 BILLION-DOLLAR BUDGET. 2591 01:48:50,309 --> 01:48:52,010 WE NEED TO BE WORKING WITH OUR 2592 01:48:52,010 --> 01:48:53,579 COLLEAGUES AT THE OTHER 2593 01:48:53,579 --> 01:48:56,849 INSTITUTES AND THEY HAVE ALL 2594 01:48:56,849 --> 01:48:59,918 BEEN WONDERFUL COLLEAGUES IN 2595 01:48:59,918 --> 01:49:05,357 DOING THESE COLLABORATIONS. 2596 01:49:05,357 --> 01:49:05,557 OKAY. 2597 01:49:05,557 --> 01:49:06,692 NEXT SLIDE. 2598 01:49:06,692 --> 01:49:10,762 SO, WE CONTINUE TO REPORT OUT 2599 01:49:10,762 --> 01:49:13,298 ON -- AS WE BRING IN NEW GRANTS 2600 01:49:13,298 --> 01:49:14,500 INTO THE PORTFOLIO HOW ARE 2601 01:49:14,500 --> 01:49:15,400 THINGS CHANGING. 2602 01:49:15,400 --> 01:49:19,872 SOME AREAS ARE NOT CHANGING A 2603 01:49:19,872 --> 01:49:22,374 WHOLE LOT. 2604 01:49:22,374 --> 01:49:26,745 AND WE HAVE, NEXT SLIDE, 2605 01:49:26,745 --> 01:49:28,113 CROSS-CODED SOME OF THESE TO TRY 2606 01:49:28,113 --> 01:49:31,049 TO SEE IF THERE ARE UNDERLYING 2607 01:49:31,049 --> 01:49:32,150 PATTERNS THAT WE'RE MISSING AS 2608 01:49:32,150 --> 01:49:37,489 FAR AS A PRIMARY THEME OF THE 2609 01:49:37,489 --> 01:49:41,994 RESEARCH VERSUS SECONDARY THEME. 2610 01:49:41,994 --> 01:49:43,962 WE HAVE NOT SURPRISING MOST OF 2611 01:49:43,962 --> 01:49:47,266 OUR RESEARCH TENDS TO BE IN 2612 01:49:47,266 --> 01:49:51,403 RESEARCH DESIGN AND METHODOLOGY. 2613 01:49:51,403 --> 01:49:54,907 BUT WE HAVE STRONG SUPPORT IN 2614 01:49:54,907 --> 01:49:57,643 TECHNOLOGIES AND DEVELOPMENT AS 2615 01:49:57,643 --> 01:50:00,579 WELL AS IN TRANSLATIONAL 2616 01:50:00,579 --> 01:50:01,146 RESEARCH. 2617 01:50:01,146 --> 01:50:04,616 AND DIFFERENT I.C.s TEND TO 2618 01:50:04,616 --> 01:50:07,185 LEAN IN THOSE MORE, BUT THIS IS 2619 01:50:07,185 --> 01:50:08,820 THE AGGREGATE. 2620 01:50:08,820 --> 01:50:09,721 NEXT SLIDE. 2621 01:50:09,721 --> 01:50:16,228 SO, WE HAVE SOME TOOLS AT NIH. 2622 01:50:16,228 --> 01:50:19,731 CAN YOU TAKE DOWN THE CLOSED 2623 01:50:19,731 --> 01:50:20,666 CAPTION? 2624 01:50:20,666 --> 01:50:23,569 IT'S COVERING MY REFERENCES, I'M 2625 01:50:23,569 --> 01:50:25,337 SORRY. 2626 01:50:25,337 --> 01:50:26,104 OKAY. 2627 01:50:26,104 --> 01:50:29,608 MOVE IT OVER. 2628 01:50:29,608 --> 01:50:29,808 OKAY. 2629 01:50:29,808 --> 01:50:32,110 IF ANYONE WOULD LIKE THEM IN THE 2630 01:50:32,110 --> 01:50:33,645 ROOM BACK ON PLEASE JUST LET ME 2631 01:50:33,645 --> 01:50:35,280 KNOW AND WE CAN DO THAT. 2632 01:50:35,280 --> 01:50:37,583 WE WANT EVERYONE TO GET THE 2633 01:50:37,583 --> 01:50:39,985 ACCESS THAT THEY NEED. 2634 01:50:39,985 --> 01:50:40,285 OKAY. 2635 01:50:40,285 --> 01:50:43,121 SO, ONE OF THE TOOLS THAT NIH 2636 01:50:43,121 --> 01:50:47,326 PROVIDES THROUGH OUR OFFICE OF 2637 01:50:47,326 --> 01:50:49,094 PORTFOLIO ANALYSIS IS CALLED 2638 01:50:49,094 --> 01:50:49,995 EYESIGHT. 2639 01:50:49,995 --> 01:50:54,366 EVE -- WE'VE BEEN PLAYING 2640 01:50:54,366 --> 01:50:56,101 AROUND WITH METRICS FROM THAT. 2641 01:50:56,101 --> 01:50:59,471 HERE IS AN EXAMPLE. 2642 01:50:59,471 --> 01:51:00,706 WE TOOK OUR CURRENT 2022 2643 01:51:00,706 --> 01:51:03,642 PORTFOLIO AND POPPED IT IN, AND 2644 01:51:03,642 --> 01:51:05,410 THIS CONFIRMS TO ME A LOT OF 2645 01:51:05,410 --> 01:51:09,114 THINGS, IT SAYS MOST RESEARCH IS 2646 01:51:09,114 --> 01:51:13,285 IN HUMAN SUBJECTS WITH LESS IN 2647 01:51:13,285 --> 01:51:14,586 ANIMAL AND MOLECULAR AND 2648 01:51:14,586 --> 01:51:15,220 CELLULAR. 2649 01:51:15,220 --> 01:51:16,888 WHAT I REALLY LIKE, I DON'T HAVE 2650 01:51:16,888 --> 01:51:23,562 A POINTER, BUT IF YOU WANT TO 2651 01:51:23,562 --> 01:51:26,431 CIRCLE THAT MEDIAN NUMBER, THAT 2652 01:51:26,431 --> 01:51:27,633 1.8, YEAH. 2653 01:51:27,633 --> 01:51:30,569 NIH HAS DEVELOPED THIS METRIC 2654 01:51:30,569 --> 01:51:33,205 CALLED THE RELATIVE CITATION 2655 01:51:33,205 --> 01:51:33,972 RATIO. 2656 01:51:33,972 --> 01:51:35,407 AND IT MEASURES SCIENTIFIC 2657 01:51:35,407 --> 01:51:37,409 INFLUENCE OF PAPERS BY FIELD AND 2658 01:51:37,409 --> 01:51:40,312 ADJUSTS FOR TIME TO LOOK AT HOW 2659 01:51:40,312 --> 01:51:45,250 MANY CITATIONS A PAPER HAS 2660 01:51:45,250 --> 01:51:46,918 RECEIVED. 2661 01:51:46,918 --> 01:51:48,754 AND THE BENCHMARK IS 1. 2662 01:51:48,754 --> 01:51:53,358 SO AN AVERAGE PAPER IN A FIELD 2663 01:51:53,358 --> 01:51:54,660 WOULD GET 1. 2664 01:51:54,660 --> 01:51:56,662 THIS SAYS THE RESEARCH NIH IS 2665 01:51:56,662 --> 01:52:02,434 FUNDING IS MUCH MORE IMPACTFUL 2666 01:52:02,434 --> 01:52:04,503 THAN AN AVERAGE REHAB PAPER IN 2667 01:52:04,503 --> 01:52:09,441 THE SAME LENGTH OF TIME. 2668 01:52:09,441 --> 01:52:11,309 THAT'S SOMETHING WE CAN LOOK AT. 2669 01:52:11,309 --> 01:52:12,911 WE CAN ALSO LOOK AT, YOU KNOW, 2670 01:52:12,911 --> 01:52:15,681 WHAT'S THE LIKELIHOOD IT'S GOING 2671 01:52:15,681 --> 01:52:18,183 TO TRANSLATE, SO THERE'S THESE 2672 01:52:18,183 --> 01:52:19,818 FANCY TRIANGLES, AND SINCE WE'RE 2673 01:52:19,818 --> 01:52:21,353 ALREADY SO MUCH INTO HUMAN WORK, 2674 01:52:21,353 --> 01:52:24,656 I DON'T THINK IT'S SURPRISING 2675 01:52:24,656 --> 01:52:27,693 THAT WE HAVE THE -- WE'RE FAIRLY 2676 01:52:27,693 --> 01:52:28,694 HIGH IN THAT TRANSLATIONAL 2677 01:52:28,694 --> 01:52:29,261 SHIFT. 2678 01:52:29,261 --> 01:52:31,763 WE CAN ALSO LOOK AT 2679 01:52:31,763 --> 01:52:32,197 PUBLICATIONS. 2680 01:52:32,197 --> 01:52:33,398 AND WE'RE GOING TO LOOK AT THAT 2681 01:52:33,398 --> 01:52:38,770 A LITTLE BIT IN MORE DETAIL IN 2682 01:52:38,770 --> 01:52:39,638 THE NEXT SLIDE. 2683 01:52:39,638 --> 01:52:41,406 I'M GOING TO PAUSE AND THANK TWO 2684 01:52:41,406 --> 01:52:45,110 PEOPLE WHO HOPE ARE STILL BEHIND 2685 01:52:45,110 --> 01:52:45,343 ME. 2686 01:52:45,343 --> 01:52:48,380 ALICIA ROSS AND JUNE LEE, WHO 2687 01:52:48,380 --> 01:52:49,381 ARE HELPING WITH PULLING 2688 01:52:49,381 --> 01:52:53,418 TOGETHER THIS DATA AND DOING 2689 01:52:53,418 --> 01:52:57,355 THESE ANNUAL SEEMS SO -- 2690 01:52:57,355 --> 01:52:58,356 ANALYSES, SO I WANT TO THANK 2691 01:52:58,356 --> 01:53:01,093 THEM FOR THE HELP WITH THESE. 2692 01:53:01,093 --> 01:53:04,262 WE LOOKED AT OUR 2022 PORTFOLIO, 2693 01:53:04,262 --> 01:53:05,230 YOU MIGHT SAY THAT'S 2694 01:53:05,230 --> 01:53:06,998 INTERESTING, HOW DO YOU HAVE 2695 01:53:06,998 --> 01:53:11,069 PUBLICATIONS IN 2015 FOR YOUR 2696 01:53:11,069 --> 01:53:12,170 2022 PORTFOLIO? 2697 01:53:12,170 --> 01:53:14,473 THIS IS -- THIS INCLUDES GRANTS 2698 01:53:14,473 --> 01:53:15,540 THAT ARE LONGER THAN FIVE YEARS 2699 01:53:15,540 --> 01:53:17,642 SO THEY HAVE BEEN RENEWED, FOR 2700 01:53:17,642 --> 01:53:20,145 EXAMPLE, OR, YOU KNOW, SOME 2701 01:53:20,145 --> 01:53:22,547 TRAINING PROGRAMS ARE 2702 01:53:22,547 --> 01:53:23,081 LONGSTANDING. 2703 01:53:23,081 --> 01:53:26,151 SO THE GRANT IS STILL ASSOCIATED 2704 01:53:26,151 --> 01:53:27,819 WITH PUBLICATIONS IN PRIOR YEARS 2705 01:53:27,819 --> 01:53:31,389 BUT THESE WERE STILL AWARDED IN 2706 01:53:31,389 --> 01:53:31,957 2022. 2707 01:53:31,957 --> 01:53:34,459 SO, I WAS ALL EXCITED ABOUT THIS 2708 01:53:34,459 --> 01:53:36,128 BECAUSE I THOUGHT IT CLEARLY 2709 01:53:36,128 --> 01:53:37,863 SHOWED CHANGES THAT HAPPENED 2710 01:53:37,863 --> 01:53:41,933 DURING THE PANDEMIC, MORE PEOPLE 2711 01:53:41,933 --> 01:53:43,335 WERE DOING MORE PUBLICATIONS. 2712 01:53:43,335 --> 01:53:47,906 BUT BECAUSE OF THAT TRICK OF HOW 2713 01:53:47,906 --> 01:53:50,575 MANY GRANTS ARE IN THIS POOL, 2714 01:53:50,575 --> 01:53:51,710 THIS MIGHT BE ARTIFICIAL. 2715 01:53:51,710 --> 01:53:54,179 SO I NEED TO FIGURE OUT HOW WE 2716 01:53:54,179 --> 01:53:56,581 CAN DIG INTO THAT A LITTLE BIT 2717 01:53:56,581 --> 01:53:56,915 MORE. 2718 01:53:56,915 --> 01:53:58,450 LOOKING AT, YOU KNOW, WHEN DOES 2719 01:53:58,450 --> 01:54:01,953 A PUBLICATION COME OUT VERSUS 2720 01:54:01,953 --> 01:54:03,588 WHEN DID THE AWARD COME OUT, 2721 01:54:03,588 --> 01:54:04,589 THESE ARE DISCREPANCIES. 2722 01:54:04,589 --> 01:54:06,324 THESE ARE THE THINGS WE'RE 2723 01:54:06,324 --> 01:54:07,659 LOOKING INTO. 2724 01:54:07,659 --> 01:54:12,731 WE ALSO HAVE ACCESS TO PATENTS, 2725 01:54:12,731 --> 01:54:13,698 NEXT SLIDE. 2726 01:54:13,698 --> 01:54:16,668 WE FUND A LOT OF RESEARCH THAT 2727 01:54:16,668 --> 01:54:19,704 IS TRANSLATIONAL, THAT WE WANT 2728 01:54:19,704 --> 01:54:21,406 TO GET INTO SMALL BUSINESS 2729 01:54:21,406 --> 01:54:25,744 HANDS, WE WANT TO GET OUT INTO 2730 01:54:25,744 --> 01:54:27,712 PEOPLE'S LIVES. 2731 01:54:27,712 --> 01:54:30,248 I THINK IT'S GOOD WE SEE THIS 2732 01:54:30,248 --> 01:54:33,084 MANY PATENTS BEING SUPPORTED. 2733 01:54:33,084 --> 01:54:34,419 I MENTIONED THAT JUNE HAS AN 2734 01:54:34,419 --> 01:54:36,588 INTEREST IN A.I. SO SHE WAS ABLE 2735 01:54:36,588 --> 01:54:38,890 TO PULL AND SEE WHAT KIND OF 2736 01:54:38,890 --> 01:54:40,859 CHANGES WE'RE SEEING IN PATENTS 2737 01:54:40,859 --> 01:54:42,294 RELATED TO REHAB. 2738 01:54:42,294 --> 01:54:44,596 YOU SEE THAT BIG JUMP IN THE 2739 01:54:44,596 --> 01:54:48,233 NUMBER OF A.I.-RELATED PATENTS. 2740 01:54:48,233 --> 01:54:48,433 OKAY. 2741 01:54:48,433 --> 01:54:51,703 NEXT SLIDE. 2742 01:54:51,703 --> 01:54:58,810 SO, THAT WAS LIKE THE 2743 01:54:58,810 --> 01:55:01,313 30,000-FOOT LEVEL, BUT I WANTED 2744 01:55:01,313 --> 01:55:05,050 TO DIG DEEPER TO TALK ABOUT EACH 2745 01:55:05,050 --> 01:55:07,786 THEME AND MAYBE WHAT WAS AN NIH 2746 01:55:07,786 --> 01:55:10,155 ACTIVITY THAT SUPPORTED IT AND 2747 01:55:10,155 --> 01:55:10,956 MAYBE SCIENCE ADVANCES. 2748 01:55:10,956 --> 01:55:12,891 SO IN THE FIRST THEME WE'RE 2749 01:55:12,891 --> 01:55:15,527 LOOKING AT REHAB ACROSS THE 2750 01:55:15,527 --> 01:55:16,127 LIFESPAN. 2751 01:55:16,127 --> 01:55:18,163 I HAVE SOME RFAs WE PUT OUT, 2752 01:55:18,163 --> 01:55:20,465 THE FIRST FROM THE AGING 2753 01:55:20,465 --> 01:55:23,001 INSTITUTE LOOKING AT CARDIAC 2754 01:55:23,001 --> 01:55:26,872 REHAB IN OLDER ADULTS, AND NCMRR 2755 01:55:26,872 --> 01:55:28,573 DID ONE ON PEDIATRIC. 2756 01:55:28,573 --> 01:55:30,242 IF YOU READ DOWN IN THE BULLETS 2757 01:55:30,242 --> 01:55:32,811 THERE WAS DISCUSSION ABOUT THE 2758 01:55:32,811 --> 01:55:35,046 IMPORTANCE OF INTERACTING WITH 2759 01:55:35,046 --> 01:55:36,448 THE "ALL OF US" RESEARCH PROGRAM 2760 01:55:36,448 --> 01:55:39,751 AT NIH AND WE HAVE AN AMERICAN 2761 01:55:39,751 --> 01:55:42,687 ASSOCIATION ON HEALTH AND 2762 01:55:42,687 --> 01:55:45,357 DISABILITY CONTRACT FROM "ALL OF 2763 01:55:45,357 --> 01:55:49,594 US," TO AAHD TO GET MORE PEOPLE 2764 01:55:49,594 --> 01:55:51,162 WITH DISABILITIES ENROLLED. 2765 01:55:51,162 --> 01:55:52,864 THERE WAS RECENTLY A PUBLICATION 2766 01:55:52,864 --> 01:55:54,199 THAT SAID MAYBE WE'RE NOT DOING 2767 01:55:54,199 --> 01:55:57,502 SO GREAT ON THAT ENROLLMENT IN 2768 01:55:57,502 --> 01:56:02,107 SENSORY DISABILITY BUT WE DO 2769 01:56:02,107 --> 01:56:03,942 HAVE THIS COLLABORATION AND 2770 01:56:03,942 --> 01:56:06,211 WE'RE TRYING TO GET THAT 2771 01:56:06,211 --> 01:56:09,014 ENROLLMENT UP. 2772 01:56:09,014 --> 01:56:15,020 ON THE SCIENTIFIC SIDE, WE HAVE 2773 01:56:15,020 --> 01:56:16,688 PAPERS WHERE WE'RE DOING, YOU 2774 01:56:16,688 --> 01:56:18,757 KNOW, MOVEMENT THERAPY IN VERY 2775 01:56:18,757 --> 01:56:20,358 YOUNG CHILD, STUDIES OF DOSING 2776 01:56:20,358 --> 01:56:22,694 AND WE HAVE STUDIES OF TIMING. 2777 01:56:22,694 --> 01:56:25,530 AND THESE WERE ALL THINGS THAT 2778 01:56:25,530 --> 01:56:30,568 WERE LAID OUT UNDER THIS THEME 2779 01:56:30,568 --> 01:56:33,738 AS BEING IMPORTANT. 2780 01:56:33,738 --> 01:56:33,972 NEXT. 2781 01:56:33,972 --> 01:56:35,473 SO, UNDER COMMUNITY AND FAMILY I 2782 01:56:35,473 --> 01:56:37,575 THINK IT WAS PRETTY CLEAR IN 2783 01:56:37,575 --> 01:56:39,210 THOSE EARLIER GRAPHS THAT THIS 2784 01:56:39,210 --> 01:56:41,846 IS THE AREA THAT WE WEREN'T 2785 01:56:41,846 --> 01:56:43,682 DOING A GREAT JOB. 2786 01:56:43,682 --> 01:56:46,217 AND I WANTED TO POINT OUT A 2787 01:56:46,217 --> 01:56:47,652 COUPLE FUNDING OPPORTUNITIES 2788 01:56:47,652 --> 01:56:54,426 THAT WE TARGETED SO WE HAD ONE 2789 01:56:54,426 --> 01:56:56,728 FROM NHLBI LOOKING THE 2790 01:56:56,728 --> 01:56:57,295 CARDIOVASCULAR AND PULMONARY 2791 01:56:57,295 --> 01:56:58,363 REHAB IN THE COMMUNITY. 2792 01:56:58,363 --> 01:57:01,766 WE HAVE THE RFA WE PUT OUT 2793 01:57:01,766 --> 01:57:04,069 LOOKING AT COMMUNITY-BASED 2794 01:57:04,069 --> 01:57:06,671 PHYSICAL ACTIVITY INTERVENTIONS 2795 01:57:06,671 --> 01:57:07,872 FOR WHEELCHAIR USERS. 2796 01:57:07,872 --> 01:57:11,509 ONE THING WE REALLY STARTED TO 2797 01:57:11,509 --> 01:57:15,313 DO IN NOTICES WE CONTROL IS TO 2798 01:57:15,313 --> 01:57:17,615 REQUIRE PLANS FOR LIVED 2799 01:57:17,615 --> 01:57:19,584 EXPERIENCE THAT IT IS A 2800 01:57:19,584 --> 01:57:20,585 REQUIREMENT, IF YOU DON'T HAVE 2801 01:57:20,585 --> 01:57:22,554 IT WE SEND IT BACK WITHOUT 2802 01:57:22,554 --> 01:57:22,887 REVIEW. 2803 01:57:22,887 --> 01:57:24,856 SO THAT'S OUR WAY OF SIGNALING 2804 01:57:24,856 --> 01:57:28,493 THAT IT'S REALLY IMPORTANT TO 2805 01:57:28,493 --> 01:57:30,328 HAVE YOUR CONSUMERS OR END USERS 2806 01:57:30,328 --> 01:57:32,097 AS PART OF THE RESEARCH PLAN. 2807 01:57:32,097 --> 01:57:37,002 AND THEN TO ME THE BIGGEST THING 2808 01:57:37,002 --> 01:57:39,838 WE COULD HAVE HAD HAPPEN WAS 2809 01:57:39,838 --> 01:57:44,676 EARLIER THIS FALL, GETTING THAT 2810 01:57:44,676 --> 01:57:45,677 HEALTH DISPARITIES DESIGNATION. 2811 01:57:45,677 --> 01:57:48,313 AND, YOU KNOW, A LOT OF PEOPLE 2812 01:57:48,313 --> 01:57:51,616 WORKED A LONG TIME TO PUSH FOR 2813 01:57:51,616 --> 01:57:51,816 THAT. 2814 01:57:51,816 --> 01:57:54,219 AND PEOPLE AROUND THIS TABLE 2815 01:57:54,219 --> 01:57:54,452 TOO. 2816 01:57:54,452 --> 01:57:56,821 SO I WANT TO JUST ACKNOWLEDGE 2817 01:57:56,821 --> 01:57:59,791 THAT TO ME THIS IS THE BIGGEST 2818 01:57:59,791 --> 01:58:02,894 GAME CHANGER AND I DON'T KNOW 2819 01:58:02,894 --> 01:58:04,295 THAT WE WOULD CALL THIS THEME 2820 01:58:04,295 --> 01:58:06,064 COMMUNITY AND FAMILY ANYMORE. 2821 01:58:06,064 --> 01:58:06,698 WE MIGHT CALL IT SOCIAL 2822 01:58:06,698 --> 01:58:10,468 DETERMINANTS OF HEALTH OR 2823 01:58:10,468 --> 01:58:11,603 SOMETHING DIFFERENT NOW. 2824 01:58:11,603 --> 01:58:14,739 YOU KNOW, A FEW ADVANCES IN THIS 2825 01:58:14,739 --> 01:58:18,243 CATEGORY, WE GOT WORK FROM LISA 2826 01:58:18,243 --> 01:58:21,046 IZONI LOOKING AT SURVEYS OF 2827 01:58:21,046 --> 01:58:23,381 PHYSICIANS AND HOW THEY ARE 2828 01:58:23,381 --> 01:58:25,917 KNOWLEDGEABLE OR NOT ABOUT THE 2829 01:58:25,917 --> 01:58:27,018 AMERICANS WITH DISABILITIES ACT, 2830 01:58:27,018 --> 01:58:28,353 WHAT KIND OF ACCOMMODATIONS THEY 2831 01:58:28,353 --> 01:58:30,622 NEED TO PROVIDE. 2832 01:58:30,622 --> 01:58:33,058 AND THEIR ATTITUDES ABOUT HAVING 2833 01:58:33,058 --> 01:58:35,427 PEOPLE WITH DISABILITIES AS 2834 01:58:35,427 --> 01:58:36,361 THEIR PATIENTS. 2835 01:58:36,361 --> 01:58:36,961 NOT GREAT. 2836 01:58:36,961 --> 01:58:38,496 WE WERE HOPING IT WOULD BE 2837 01:58:38,496 --> 01:58:39,164 BETTER. 2838 01:58:39,164 --> 01:58:39,931 BUT I THINK IT'S REALLY 2839 01:58:39,931 --> 01:58:42,000 IMPORTANT WE HAVE THAT 2840 01:58:42,000 --> 01:58:42,901 INFORMATION OUT THERE. 2841 01:58:42,901 --> 01:58:43,968 NINDS IS DOING A LOT. 2842 01:58:43,968 --> 01:58:46,938 THEY HAVE PUT OUT A SOCIAL 2843 01:58:46,938 --> 01:58:48,573 DETERMINANTS OF HEALTH 2844 01:58:48,573 --> 01:58:48,907 FRAMEWORK. 2845 01:58:48,907 --> 01:58:51,876 AND THEN I PULLED AN INTRAMURAL 2846 01:58:51,876 --> 01:58:54,813 PAPER FROM OUR COLLEAGUES AT 2847 01:58:54,813 --> 01:58:58,850 NIAMS, LOOKING AT THE 2848 01:58:58,850 --> 01:58:59,951 CORRELATION BETWEEN MOBILITY 2849 01:58:59,951 --> 01:59:02,153 IMPAIRMENT AND LOSS OF INCOME OR 2850 01:59:02,153 --> 01:59:04,322 YEARS WORKING. 2851 01:59:04,322 --> 01:59:07,092 SO WE HAVE SOME DATA SHOWING 2852 01:59:07,092 --> 01:59:09,461 THAT, YOU KNOW, THE REDUCTION IN 2853 01:59:09,461 --> 01:59:12,363 MOBILITY LEADS TO REDUCTION IN 2854 01:59:12,363 --> 01:59:17,802 INCOME AND WORKING YEARS. 2855 01:59:17,802 --> 01:59:20,572 NEXT SLIDE. 2856 01:59:20,572 --> 01:59:22,407 SO, TECHNOLOGY USED IN 2857 01:59:22,407 --> 01:59:24,576 DEVELOPMENT IS KIND OF CORE TO A 2858 01:59:24,576 --> 01:59:27,312 LOT OF REHAB AND IT'S AN AREA 2859 01:59:27,312 --> 01:59:29,514 THAT, YOU KNOW, WE WERE DOING 2860 01:59:29,514 --> 01:59:30,815 PRETTY WELL IN. 2861 01:59:30,815 --> 01:59:36,087 BUT I WANTED TO HIGHLIGHT SOME 2862 01:59:36,087 --> 01:59:36,654 WORK PARTICULARLY AROUND 2863 01:59:36,654 --> 01:59:38,056 INVASIVE NEURAL DEVICES THAT 2864 01:59:38,056 --> 01:59:42,861 HAVE BEEN ENABLED BY THE NIH 2865 01:59:42,861 --> 01:59:43,962 BLUEPRINT, THE MedTech 2866 01:59:43,962 --> 01:59:46,397 PROGRAM AS WELL AS THE BRAIN 2867 01:59:46,397 --> 01:59:47,365 INITIATIVE. 2868 01:59:47,365 --> 01:59:52,203 YOU KNOW, THE NUMBER OF 2869 01:59:52,203 --> 01:59:53,071 FIRST-IN-HUMAN INVASIVE 2870 01:59:53,071 --> 01:59:55,507 NEUROMODULATION STUDIES ARE JUST 2871 01:59:55,507 --> 01:59:55,974 EXPLODING. 2872 01:59:55,974 --> 01:59:59,878 AND I ALSO WANTED TO CALL OUT 2873 01:59:59,878 --> 02:00:02,480 COLLEAGUES AT NIBIB, SO THEY 2874 02:00:02,480 --> 02:00:05,016 WERE OUR LEAD DURING THE 2875 02:00:05,016 --> 02:00:08,286 PANDEMIC ON GETTING HOME TESTS 2876 02:00:08,286 --> 02:00:09,053 FOR COVID-19. 2877 02:00:09,053 --> 02:00:11,256 AND, YOU KNOW, THEY GOT FEEDBACK 2878 02:00:11,256 --> 02:00:13,324 SAYING THESE ARE NOT ACCESSIBLE. 2879 02:00:13,324 --> 02:00:14,359 YOU KNOW, PEOPLE WITH 2880 02:00:14,359 --> 02:00:15,660 DISABILITIES CAN'T USE THEM. 2881 02:00:15,660 --> 02:00:18,196 PEOPLE WITH LOW VISION CAN'T USE 2882 02:00:18,196 --> 02:00:19,063 THEM. 2883 02:00:19,063 --> 02:00:23,101 AND THEY REALLY TOOK THAT AND 2884 02:00:23,101 --> 02:00:25,069 SET UP A WORKING GROUP AND WENT 2885 02:00:25,069 --> 02:00:27,205 THROUGH AND DID ALL THE ANALYSES 2886 02:00:27,205 --> 02:00:29,140 AND WHEN THEY CAME UP WITH BEST 2887 02:00:29,140 --> 02:00:30,575 PRACTICES THEY PAIRED WITH THE 2888 02:00:30,575 --> 02:00:34,712 U.S. AX SAYS -- ACCESS BOARD TO 2889 02:00:34,712 --> 02:00:35,813 GET THOSE OUT THERE BECAUSE 2890 02:00:35,813 --> 02:00:37,982 WE'LL HAVE ANOTHER NEED FOR 2891 02:00:37,982 --> 02:00:39,517 AT-HOME TESTS, GETTING THAT 2892 02:00:39,517 --> 02:00:40,852 INFORMATION AND WHAT WE'VE 2893 02:00:40,852 --> 02:00:46,524 LEARNED OUT THERE I THINK IS 2894 02:00:46,524 --> 02:00:46,758 GREAT. 2895 02:00:46,758 --> 02:00:51,129 IN SCIENCE ADVANCES I MENTIONED 2896 02:00:51,129 --> 02:00:53,331 THE OPENCAP TECHNOLOGY FROM THE 2897 02:00:53,331 --> 02:00:54,866 DELP LAB EARLIER. 2898 02:00:54,866 --> 02:00:57,902 WE PULLED A PATENT RELATED TO 2899 02:00:57,902 --> 02:00:58,169 TELEREHAB. 2900 02:00:58,169 --> 02:00:59,671 WE GET A LOT OF QUESTIONS ABOUT 2901 02:00:59,671 --> 02:00:59,904 THAT. 2902 02:00:59,904 --> 02:01:02,840 AND THEN I WANTED TO HIGHLIGHT A 2903 02:01:02,840 --> 02:01:07,011 POSTDOCTORAL FELLOW WHO HAS SOME 2904 02:01:07,011 --> 02:01:08,213 PRETTY COOL MORPHINE ELECTRODE 2905 02:01:08,213 --> 02:01:16,654 TECHNOLOGIES THAT COULD BE USED 2906 02:01:16,654 --> 02:01:17,956 FOR MYOELECTRIC. 2907 02:01:17,956 --> 02:01:18,923 NEXT SLIDE. 2908 02:01:18,923 --> 02:01:20,158 HERE AGAIN THIS IS AN AREA WE 2909 02:01:20,158 --> 02:01:21,993 WERE DOING A LOT. 2910 02:01:21,993 --> 02:01:24,529 WE DIDN'T NEED TO INCENTIVIZE 2911 02:01:24,529 --> 02:01:25,964 THIS RESEARCH DESIGN AND 2912 02:01:25,964 --> 02:01:26,831 METHODOLOGY WHICH IS WHERE A LOT 2913 02:01:26,831 --> 02:01:29,434 OF CLINICAL TRIALS ALSO END UP 2914 02:01:29,434 --> 02:01:30,768 IN OUR CODING. 2915 02:01:30,768 --> 02:01:33,705 WE DIDN'T NEED TO INCENTIVIZE 2916 02:01:33,705 --> 02:01:35,907 THAT WITH FUNDING OPPORTUNITIES 2917 02:01:35,907 --> 02:01:36,307 NECESSARILY. 2918 02:01:36,307 --> 02:01:38,610 BUT WE, YOU KNOW, AS NIH AND 2919 02:01:38,610 --> 02:01:43,014 WE'RE PART OF THAT ENVIRONMENT, 2920 02:01:43,014 --> 02:01:45,950 WE HAVE BEGUN IMPLEMENTATION OF 2921 02:01:45,950 --> 02:01:49,354 THE DATA MANAGEMENT SHARING 2922 02:01:49,354 --> 02:01:51,656 POLICY, WE HAVE CURATED A HUGE 2923 02:01:51,656 --> 02:01:54,025 NUMBER OF COMMON DATA ELEMENTS. 2924 02:01:54,025 --> 02:01:55,827 AND THEN UNDER THIS I WOULD ALSO 2925 02:01:55,827 --> 02:01:59,664 PUT THINGS LIKE SETTING UP 2926 02:01:59,664 --> 02:02:00,064 REGISTRIES. 2927 02:02:00,064 --> 02:02:01,966 YOU'VE HEARD ME TALK ABOUT THE 2928 02:02:01,966 --> 02:02:04,802 COLLABORATION WITH DoD ON OUR 2929 02:02:04,802 --> 02:02:06,537 LIMB LOSS AND PRESERVATION 2930 02:02:06,537 --> 02:02:07,005 REGISTRY. 2931 02:02:07,005 --> 02:02:09,073 IT'S COMING TO THE POINT OF NO 2932 02:02:09,073 --> 02:02:12,243 LONGER BEING ON THE CONTRACT AND 2933 02:02:12,243 --> 02:02:15,413 JOE HAS DONE A TREMENDOUS JOB 2934 02:02:15,413 --> 02:02:20,418 MANAGING THIS WITH OUR PARTNERS. 2935 02:02:20,418 --> 02:02:23,855 THEY HAVE -- I THINK THEY SAID 2936 02:02:23,855 --> 02:02:28,726 250,000 PATIENTS NOW IN THIS 2937 02:02:28,726 --> 02:02:30,762 REGISTRY WITH OVER 10 MILLION, 2938 02:02:30,762 --> 02:02:33,064 OKAY, 10 MILLION HEALTH 2939 02:02:33,064 --> 02:02:33,564 ENCOUNTERS. 2940 02:02:33,564 --> 02:02:37,769 SO AND MOST OF THEM ARE IN 2941 02:02:37,769 --> 02:02:38,202 PRESERVATION. 2942 02:02:38,202 --> 02:02:40,605 SO I THINK WE'RE LEARNING A LOT 2943 02:02:40,605 --> 02:02:41,706 FROM THIS REGISTRY. 2944 02:02:41,706 --> 02:02:47,278 AND WE TALKED ABOUT THE CVI ONE 2945 02:02:47,278 --> 02:02:47,745 EARLIER. 2946 02:02:47,745 --> 02:02:48,446 UNDER THIS CATEGORY I WANT TO 2947 02:02:48,446 --> 02:02:52,216 ACKNOWLEDGE THE WORK IN A NIDCD 2948 02:02:52,216 --> 02:02:57,021 DID, FOR MANY YEARS BUILDING A 2949 02:02:57,021 --> 02:02:58,423 RESEARCH BASE THAT ALLOWED THE 2950 02:02:58,423 --> 02:03:03,461 FDA TO CREATE A NEW CATEGORY FOR 2951 02:03:03,461 --> 02:03:08,599 OVER THE COUNTER HEARING AIDS. 2952 02:03:08,599 --> 02:03:10,768 WITHOUT THAT LEG WORK THAT 2953 02:03:10,768 --> 02:03:15,807 WASN'T POSSIBLE. 2954 02:03:15,807 --> 02:03:17,675 KELLY KING FROM NIDCD DOES A 2955 02:03:17,675 --> 02:03:18,876 GREAT TALK, IF YOU WANT TO HEAR 2956 02:03:18,876 --> 02:03:20,411 THE STORY WE CAN INVITE HER TO 2957 02:03:20,411 --> 02:03:21,612 TELL YOU THAT. 2958 02:03:21,612 --> 02:03:26,351 THIS IDEA WE'RE USING EXISTING 2959 02:03:26,351 --> 02:03:31,356 DATA, HERE'S A PAPER FROM KUMAR 2960 02:03:31,356 --> 02:03:32,990 FUNDED BY NIMHD, MINORITY HEALTH 2961 02:03:32,990 --> 02:03:34,325 AND HEALTH DISPARITIES, LOOKING 2962 02:03:34,325 --> 02:03:38,062 AT DISPARITIES IN PEOPLE WITH 2963 02:03:38,062 --> 02:03:40,765 DUAL ELIGIBILITY FOLLOWING 2964 02:03:40,765 --> 02:03:40,998 STROKE. 2965 02:03:40,998 --> 02:03:44,936 NEXT SLIDE. 2966 02:03:44,936 --> 02:03:51,042 SO, I HAVE THE WORD "RESEARCH" 2967 02:03:51,042 --> 02:03:52,543 HIGHLIGHTED. 2968 02:03:52,543 --> 02:03:52,977 ITALICIZED. 2969 02:03:52,977 --> 02:03:56,114 IN OUR ORIGINAL RESEARCH PLAN WE 2970 02:03:56,114 --> 02:03:57,181 CALLED THIS TRANSLATIONAL 2971 02:03:57,181 --> 02:03:57,648 SCIENCE. 2972 02:03:57,648 --> 02:04:01,352 AND I GOT A LOVELY E-MAIL FROM 2973 02:04:01,352 --> 02:04:03,020 THE DIRECTOR OF NCATS, NATIONAL 2974 02:04:03,020 --> 02:04:04,655 CENTER FOR ADVANCING 2975 02:04:04,655 --> 02:04:05,556 TRANSLATIONAL SCIENCE, WHEN WE 2976 02:04:05,556 --> 02:04:06,958 CAME OUT WITH OUR NEXT VERSION 2977 02:04:06,958 --> 02:04:08,726 AND HE SAID THIS IS A GREAT 2978 02:04:08,726 --> 02:04:11,129 PLAN, EXEMPT YOU'RE NOT DOING 2979 02:04:11,129 --> 02:04:12,930 TRANSLATIONAL SCIENCE. 2980 02:04:12,930 --> 02:04:14,298 YOU'RE DOING TRANSLATIONAL 2981 02:04:14,298 --> 02:04:14,565 RESEARCH. 2982 02:04:14,565 --> 02:04:16,367 I SAID, OKAY, THANK YOU, WE'LL 2983 02:04:16,367 --> 02:04:17,802 CHANGE THIS. 2984 02:04:17,802 --> 02:04:19,303 I APPRECIATE THE FEEDBACK. 2985 02:04:19,303 --> 02:04:22,073 SO, AND OF COURSE HE WAS 2986 02:04:22,073 --> 02:04:23,174 ABSOLUTELY RIGHT. 2987 02:04:23,174 --> 02:04:26,210 WE WEREN'T DOING THE SCIENCE OF 2988 02:04:26,210 --> 02:04:28,513 HOW YOU TRANSLATE. 2989 02:04:28,513 --> 02:04:29,814 WE WERE DOING TRANSLATIONAL 2990 02:04:29,814 --> 02:04:30,381 RESEARCH. 2991 02:04:30,381 --> 02:04:34,419 SO WE HAVE UPDATED THAT IN OUR 2992 02:04:34,419 --> 02:04:36,254 MORE RECENT PLAN. 2993 02:04:36,254 --> 02:04:39,991 YOU KNOW, DR. BIANCHI TALKED 2994 02:04:39,991 --> 02:04:43,828 ABOUT LIMB REGENERATION. 2995 02:04:43,828 --> 02:04:46,130 AND ASPIRATIONAL GOAL FOR NICHD, 2996 02:04:46,130 --> 02:04:47,765 IT WAS BURIED IN HER SLIDE BUT 2997 02:04:47,765 --> 02:04:49,734 WE JUST HAD A FUNDING 2998 02:04:49,734 --> 02:04:51,135 OPPORTUNITY COME IN AND THAT WAS 2999 02:04:51,135 --> 02:04:53,104 REVIEWED JUST A FEW WEEKS AGO. 3000 02:04:53,104 --> 02:04:55,072 AND THAT WAS BASED OFF A 3001 02:04:55,072 --> 02:05:01,012 WORKSHOP WE DID WITH OUR 3002 02:05:01,012 --> 02:05:01,479 DEVELOPMENTAL BIOLOGY 3003 02:05:01,479 --> 02:05:01,979 COLLEAGUES. 3004 02:05:01,979 --> 02:05:05,516 I THINK I MENTIONED THE OTHER 3005 02:05:05,516 --> 02:05:07,251 THINGS ON THIS SLIDE. 3006 02:05:07,251 --> 02:05:13,691 AND THEN THERE'S A PAPER FROM 3007 02:05:13,691 --> 02:05:16,661 CHRISTIAN WELLE'S GROUP, WE HAVE 3008 02:05:16,661 --> 02:05:18,529 APPROVAL FOR VNS FOR STROKE 3009 02:05:18,529 --> 02:05:19,964 REHAB BUT THAT DOESN'T MEAN WE 3010 02:05:19,964 --> 02:05:20,832 UNDERSTAND ALL THE MECHANISMS. 3011 02:05:20,832 --> 02:05:25,069 THIS IS A PAPER FROM ""NEURON" 3012 02:05:25,069 --> 02:05:30,107 USING OPTOGENETICS AND CALCIUM 3013 02:05:30,107 --> 02:05:33,411 IMAGING TO UNDERSTAND HOW VNS IS 3014 02:05:33,411 --> 02:05:35,480 CHANGING THE BRAIN. 3015 02:05:35,480 --> 02:05:39,083 AND UNDERSTANDING THOSE 3016 02:05:39,083 --> 02:05:39,984 MECHANISMS TO IMPROVE ON 3017 02:05:39,984 --> 02:05:41,285 CLINICAL CARE. 3018 02:05:41,285 --> 02:05:41,486 OKAY. 3019 02:05:41,486 --> 02:05:43,721 LAST SLIDE. 3020 02:05:43,721 --> 02:05:44,989 I'M GETTING THERE, GUYS. 3021 02:05:44,989 --> 02:05:47,325 REMEMBER, I SAID I'M 3022 02:05:47,325 --> 02:05:49,026 CONGRESSIONALLY OBLIGATED TO 3023 02:05:49,026 --> 02:05:52,029 UPDATE YOU GUYS. 3024 02:05:52,029 --> 02:05:53,431 SO THE OTHER THING IS 3025 02:05:53,431 --> 02:05:54,098 INFRASTRUCTURE. 3026 02:05:54,098 --> 02:05:58,135 SO WE HAD A GREAT GROUP SPEND 3027 02:05:58,135 --> 02:06:00,271 LAST YEAR MAKING RECOMMENDATIONS 3028 02:06:00,271 --> 02:06:01,138 ABOUT INFRASTRUCTURE. 3029 02:06:01,138 --> 02:06:04,509 AND YOU WILL CONTINUE TO HEAR 3030 02:06:04,509 --> 02:06:07,879 MORE FROM THAT, MORE FROM US ON 3031 02:06:07,879 --> 02:06:08,479 INFRASTRUCTURE. 3032 02:06:08,479 --> 02:06:11,482 WE'RE TRYING TO LOOK AT THE 3033 02:06:11,482 --> 02:06:12,550 WHOLE PIPELINE, OR PATHWAY, WE 3034 02:06:12,550 --> 02:06:14,652 HAVE A REPORT THAT MICHELLE IS 3035 02:06:14,652 --> 02:06:16,187 GOING TO GIVE ABOUT THE 3036 02:06:16,187 --> 02:06:20,224 IMPORTANCE OF TRAINING AND 3037 02:06:20,224 --> 02:06:21,425 CAREER DEVELOPMENT, AND NCMRR'S 3038 02:06:21,425 --> 02:06:22,326 CONTROL IN THAT. 3039 02:06:22,326 --> 02:06:26,564 I WANTED TO HIGHLIGHT A COUPLE 3040 02:06:26,564 --> 02:06:32,603 PROGRAMS IN OUR R25 MECHANISMS, 3041 02:06:32,603 --> 02:06:37,842 COURSES, REHAPPEN OUT OF USC AND 3042 02:06:37,842 --> 02:06:41,913 TIDE TRAINING OUT OF DELAWARE 3043 02:06:41,913 --> 02:06:43,881 AND PITT. 3044 02:06:43,881 --> 02:06:44,615 OKAY. 3045 02:06:44,615 --> 02:06:50,421 SO, THAT'S WHERE WE ARE TODAY. 3046 02:06:50,421 --> 02:06:51,188 NEXT SLIDE. 3047 02:06:51,188 --> 02:06:53,391 NOW WE NEED TO START THINKING 3048 02:06:53,391 --> 02:06:56,460 WHERE WE'RE GOING TO GO. 3049 02:06:56,460 --> 02:07:01,599 SO, I WOULD ARGUE THAT A LOT HAS 3050 02:07:01,599 --> 02:07:02,900 CHANGED SINCE 2016. 3051 02:07:02,900 --> 02:07:05,102 WE HAVE OUR NEW HEALTH 3052 02:07:05,102 --> 02:07:06,070 DISPARITIES DESIGNATION. 3053 02:07:06,070 --> 02:07:09,407 WE'RE IN THE PROCESS OF REVISING 3054 02:07:09,407 --> 02:07:10,808 THE NIH MISSION STATEMENT. 3055 02:07:10,808 --> 02:07:12,243 THERE'S SO MUCH MORE 3056 02:07:12,243 --> 02:07:14,412 CONVERSATION AROUND HEALTH 3057 02:07:14,412 --> 02:07:20,551 EQUITY AND ABLEISM, WHERE DOES 3058 02:07:20,551 --> 02:07:23,421 REHAB FIT IN, WHAT DO WE NEED TO 3059 02:07:23,421 --> 02:07:30,394 EDUCATE NIH AND OURSELVES ON AS 3060 02:07:30,394 --> 02:07:31,162 PRIORITIES. 3061 02:07:31,162 --> 02:07:34,332 LONG COVID WASN'T EVEN A 3062 02:07:34,332 --> 02:07:35,533 CONVERSATION WHEN THE ORIGINAL 3063 02:07:35,533 --> 02:07:36,667 THEMES WERE PUT TOGETHER SO I 3064 02:07:36,667 --> 02:07:38,069 WOULD ARGUE THAT IT IS TIME FOR 3065 02:07:38,069 --> 02:07:41,706 US TO COME UP WITH SOME NEW 3066 02:07:41,706 --> 02:07:46,377 THEMES. 3067 02:07:46,377 --> 02:07:46,744 OKAY. 3068 02:07:46,744 --> 02:07:47,478 NEXT SLIDE. 3069 02:07:47,478 --> 02:07:55,019 HOW DO WE DO THAT? 3070 02:07:55,019 --> 02:07:57,555 THIS IS THE NIH PLAN. 3071 02:07:57,555 --> 02:08:00,391 NIH RESEARCH PLAN FOR 3072 02:08:00,391 --> 02:08:00,891 REHABILITATION. 3073 02:08:00,891 --> 02:08:04,996 SO, THE ONUS IS ON NIH TO PUT IT 3074 02:08:04,996 --> 02:08:07,598 TOGETHER WITH WHAT I HOPE IS 3075 02:08:07,598 --> 02:08:09,667 INPUT FROM THE COMMUNITY AND 3076 02:08:09,667 --> 02:08:10,668 FROM YOU ALL. 3077 02:08:10,668 --> 02:08:13,738 YOU ARE OUR EXPERTS THAT WE NEED 3078 02:08:13,738 --> 02:08:16,273 TO WEIGH IN HERE. 3079 02:08:16,273 --> 02:08:18,009 SO, MY PLAN, YOU CAN TELL ME 3080 02:08:18,009 --> 02:08:21,278 WHAT YOU THINK OF THIS PLAN, IS 3081 02:08:21,278 --> 02:08:23,714 TO START WITH REQUEST FOR 3082 02:08:23,714 --> 02:08:25,549 INFORMATION EARLY NEXT YEAR. 3083 02:08:25,549 --> 02:08:27,084 HOW DOES THE FIELD THINK WE'VE 3084 02:08:27,084 --> 02:08:27,518 BEEN DOING? 3085 02:08:27,518 --> 02:08:29,820 YOU KNOW, THIS IS A PULSE CHECK. 3086 02:08:29,820 --> 02:08:32,890 ARE THERE THINGS WE SHOULD START 3087 02:08:32,890 --> 02:08:34,225 CONSIDERING IN THEMES? 3088 02:08:34,225 --> 02:08:35,159 WITH THAT COORDINATING COMMITTEE 3089 02:08:35,159 --> 02:08:37,928 THAT I MENTIONED THAT WE MEET 3090 02:08:37,928 --> 02:08:40,865 EVERY MONTH, NCMRR STAFF AND 3091 02:08:40,865 --> 02:08:42,833 THAT COMMITTEE WILL REVIEW THOSE 3092 02:08:42,833 --> 02:08:44,268 AND START DRAFTING THEMES. 3093 02:08:44,268 --> 02:08:46,237 A YEAR FROM NOW WHEN WE MEET 3094 02:08:46,237 --> 02:08:48,406 WE'RE GOING TO TALK ABOUT WHAT 3095 02:08:48,406 --> 02:08:52,243 WE'VE DONE IN THAT TIME. 3096 02:08:52,243 --> 02:08:54,912 WE HAVE TO HAVE THAT CONFERENCE 3097 02:08:54,912 --> 02:08:56,080 I MENTIONED. 3098 02:08:56,080 --> 02:08:57,214 TENTATIVELY, VERY TENTATIVELY, 3099 02:08:57,214 --> 02:08:59,583 I'VE THOUGHT OF FEBRUARY OF 3100 02:08:59,583 --> 02:09:00,051 2025. 3101 02:09:00,051 --> 02:09:05,823 SO WE CAN HAVE SOME OF THE INPUT 3102 02:09:05,823 --> 02:09:08,259 FROM THAT CONFERENCE, INFORM OUR 3103 02:09:08,259 --> 02:09:11,562 NEW THEMES, NEW RESEARCH PLAN. 3104 02:09:11,562 --> 02:09:13,197 I HAVE REALLY, REALLY ENJOYED 3105 02:09:13,197 --> 02:09:15,166 OVER THE LAST COUPLE YEARS 3106 02:09:15,166 --> 02:09:17,234 HAVING SUBCOMMITTEES OF THIS 3107 02:09:17,234 --> 02:09:18,969 BOARD, GETTING TO TALK AND MEET 3108 02:09:18,969 --> 02:09:22,273 WITH YOU ON A MORE REGULAR 3109 02:09:22,273 --> 02:09:22,473 BASIS. 3110 02:09:22,473 --> 02:09:28,946 SO, I HAVE A COUPLE IDEAS FOR 3111 02:09:28,946 --> 02:09:29,146 THOSE. 3112 02:09:29,146 --> 02:09:32,116 2025 IS LIKE A LONG TIME BUT 3113 02:09:32,116 --> 02:09:34,752 WE'LL NARROW THAT DOWN. 3114 02:09:34,752 --> 02:09:37,888 ONCE WE FEEL GOOD ABOUT THOSE 3115 02:09:37,888 --> 02:09:40,424 THEMES, DO ANOTHER RFI WITH THE 3116 02:09:40,424 --> 02:09:42,493 COMMUNITY, AND THIS ALL NEEDS TO 3117 02:09:42,493 --> 02:09:47,331 BE DONE IN TWO YEARS BECAUSE I 3118 02:09:47,331 --> 02:09:48,833 LEARNED IT TAKES A GOOD SIX TO 3119 02:09:48,833 --> 02:09:51,168 EIGHT MONTHS TO GET ANYTHING 3120 02:09:51,168 --> 02:09:52,803 CLEARED AND ACTUALLY PUBLISHED. 3121 02:09:52,803 --> 02:09:54,772 IF I WANT THIS DOCUMENT 3122 02:09:54,772 --> 02:09:56,373 AVAILABLE IN 2026 IT NEEDS TO BE 3123 02:09:56,373 --> 02:09:57,808 DONE EARLIER. 3124 02:09:57,808 --> 02:09:58,676 I'M LOOKING AT MY OTHER 3125 02:09:58,676 --> 02:10:00,211 COLLEAGUES ABOUT HOW LONG IT 3126 02:10:00,211 --> 02:10:03,414 TAKES TO GET THINGS CLEARED. 3127 02:10:03,414 --> 02:10:04,915 THEY ARE NODDING ALONG. 3128 02:10:04,915 --> 02:10:06,684 SO, YOU MIGHT BE SAYING WHY ARE 3129 02:10:06,684 --> 02:10:08,085 WE TALKING ABOUT THIS NOW? 3130 02:10:08,085 --> 02:10:09,720 THAT IS WHY BECAUSE I KNOW THIS 3131 02:10:09,720 --> 02:10:13,257 IS GOING TO TAKE US A COUPLE 3132 02:10:13,257 --> 02:10:19,463 YEARS TO GET THROUGH. 3133 02:10:19,463 --> 02:10:21,766 SO, NEXT SLIDE. 3134 02:10:21,766 --> 02:10:23,067 THE ASK. 3135 02:10:23,067 --> 02:10:27,238 SO WHAT DO I NEED FROM YOU ALL? 3136 02:10:27,238 --> 02:10:32,843 SO, I'M ENVISIONING KIND OF TWO 3137 02:10:32,843 --> 02:10:34,478 WORKING GROUPS, THAT'S WHAT WE 3138 02:10:34,478 --> 02:10:35,346 DID LAST TIME. 3139 02:10:35,346 --> 02:10:36,046 MAYBE NO. 3140 02:10:36,046 --> 02:10:37,448 YEAH, I GUESS LAST TIME AND THE 3141 02:10:37,448 --> 02:10:38,215 TIME BEFORE. 3142 02:10:38,215 --> 02:10:40,851 ONE GROUP WAS WORKING ON 3143 02:10:40,851 --> 02:10:41,285 CONFERENCE PLANNING. 3144 02:10:41,285 --> 02:10:46,423 AND THIS IS KIND OF HIGH-LEVEL 3145 02:10:46,423 --> 02:10:46,657 ADVICE. 3146 02:10:46,657 --> 02:10:51,395 SO ARE WE GOING GOING TO DO IT 3147 02:10:51,395 --> 02:10:53,097 IN PERSON, HYBRID, WHAT KIND OF 3148 02:10:53,097 --> 02:10:54,965 THEMES, WHAT'S IMPORTANT IN 3149 02:10:54,965 --> 02:10:57,234 INVOLVING STUDENTS AND TRAINEES? 3150 02:10:57,234 --> 02:10:59,537 YOU KNOW, THOSE TYPES OF THINGS. 3151 02:10:59,537 --> 02:11:01,939 SO I'M ENVISIONING THAT GROUP 3152 02:11:01,939 --> 02:11:04,375 MEETING EVERY OTHER MONTH FROM 3153 02:11:04,375 --> 02:11:10,714 THE SUMMER TO WHEN THE MEETING 3154 02:11:10,714 --> 02:11:11,248 HAPPENS. 3155 02:11:11,248 --> 02:11:12,449 THE SECOND GROUP WILL PICK UP 3156 02:11:12,449 --> 02:11:15,519 AFTER THAT WHERE WE'RE GETTING 3157 02:11:15,519 --> 02:11:19,256 MORE FEEDBACK ON THE SCIENTIFIC 3158 02:11:19,256 --> 02:11:19,924 THEMES. 3159 02:11:19,924 --> 02:11:22,960 SO, HAVING YOUR BUY-IN IS REALLY 3160 02:11:22,960 --> 02:11:23,327 IMPORTANT. 3161 02:11:23,327 --> 02:11:30,501 I SAID EARLIER THE PLAN IS ONLY 3162 02:11:30,501 --> 02:11:36,207 USEFUL IF YOU ALL, LARGE YOU, 3163 02:11:36,207 --> 02:11:37,741 THINK IT'S USEFUL. 3164 02:11:37,741 --> 02:11:41,779 SO, I'M GOING TO STOP THERE AND 3165 02:11:41,779 --> 02:11:43,314 YOU DON'T HAVE TO VOLUNTEER 3166 02:11:43,314 --> 02:11:44,215 RIGHT NOW. 3167 02:11:44,215 --> 02:11:45,850 I WOULD LOVE IT IF YOU 3168 02:11:45,850 --> 02:11:48,152 VOLUNTEERED RIGHT NOW BUT WE'LL 3169 02:11:48,152 --> 02:11:50,988 BE FOLLOWING UP AFTER THIS 3170 02:11:50,988 --> 02:11:53,724 MEETING TO SEE IF THERE'S 3171 02:11:53,724 --> 02:11:55,793 INTEREST IN PARTICIPATING IN 3172 02:11:55,793 --> 02:11:57,761 THESE TYPES OF WORKING GROUPS. 3173 02:11:57,761 --> 02:12:00,965 SO I'LL PAUSE AND ASK FOR 3174 02:12:00,965 --> 02:12:04,268 QUESTIONS. 3175 02:12:04,268 --> 02:12:09,039 >> SO THANK YOU AGAIN, THERESA. 3176 02:12:09,039 --> 02:12:12,209 THE BREADTH AND DEPTH OF ALL THE 3177 02:12:12,209 --> 02:12:14,712 WORK THAT'S GOING ON IS 3178 02:12:14,712 --> 02:12:15,713 ASTOUNDING. 3179 02:12:15,713 --> 02:12:19,450 THANK YOU. 3180 02:12:19,450 --> 02:12:20,184 QUESTIONS, COMMENTS, VOLUNTEERS? 3181 02:12:20,184 --> 02:12:22,119 >> RALPH, YOU HAVE TO DO IT. 3182 02:12:22,119 --> 02:12:24,388 >> YEAH, AS YOU'RE THINKING 3183 02:12:24,388 --> 02:12:26,090 ABOUT THIS, A LOT OF ISSUES COME 3184 02:12:26,090 --> 02:12:29,059 UP FROM THE REHAB FIELD, FROM 3185 02:12:29,059 --> 02:12:30,928 THE RESEARCHERS, FROM OUR 3186 02:12:30,928 --> 02:12:32,796 ADVOCATES, OUR SUPPORTERS, FROM 3187 02:12:32,796 --> 02:12:34,231 PEOPLE WITH DISABILITIES. 3188 02:12:34,231 --> 02:12:36,734 THE FIRST LEVEL ISSUE, IS IT 3189 02:12:36,734 --> 02:12:37,801 REALLY A RESEARCH QUESTION OR 3190 02:12:37,801 --> 02:12:38,802 MORE A POLITICAL WILL OR 3191 02:12:38,802 --> 02:12:40,237 SOMETHING LIKE THAT. 3192 02:12:40,237 --> 02:12:42,539 EVEN SO, HOW COULD RESEARCH 3193 02:12:42,539 --> 02:12:43,607 INFLUENCE IT? 3194 02:12:43,607 --> 02:12:45,276 THE SECOND ISSUE IS SO IF THERE 3195 02:12:45,276 --> 02:12:47,978 IS AN ISSUE THAT WE SHOULD THINK 3196 02:12:47,978 --> 02:12:51,181 ABOUT HOW IS IT RESEARCHABLE? 3197 02:12:51,181 --> 02:12:54,551 AND THEN THE NEXT LEVEL IS HOW 3198 02:12:54,551 --> 02:12:57,087 DO WE HELP? 3199 02:12:57,087 --> 02:12:58,389 SO THERE'S ALREADY 3200 02:12:58,389 --> 02:12:59,256 INVESTIGATOR-ISSUED APPLICATION, 3201 02:12:59,256 --> 02:13:00,257 WHY ISN'T THAT ALREADY OUT 3202 02:13:00,257 --> 02:13:00,557 THERE? 3203 02:13:00,557 --> 02:13:02,226 WE HAVE TO GENERATE MORE 3204 02:13:02,226 --> 02:13:02,593 INFRASTRUCTURE. 3205 02:13:02,593 --> 02:13:04,194 IS THERE SOME PIECE MISSING, 3206 02:13:04,194 --> 02:13:05,596 SOMETHING WE HAVE TO 3207 02:13:05,596 --> 02:13:05,896 INCENTIVIZE? 3208 02:13:05,896 --> 02:13:07,932 YOU CAN THINK ABOUT THAT LEVEL. 3209 02:13:07,932 --> 02:13:09,333 YOU FOLKS HAVE THE SKILL SET, 3210 02:13:09,333 --> 02:13:12,536 PART OF THE REASON YOU'RE ON THE 3211 02:13:12,536 --> 02:13:13,871 ADVISORY BOARD IS THE BROAD 3212 02:13:13,871 --> 02:13:15,072 CONNECTIONS BACK TO YOUR 3213 02:13:15,072 --> 02:13:16,407 COMMUNITIES, WHAT YOU BRING. 3214 02:13:16,407 --> 02:13:19,710 SO THAT'S KIND OF A PREAMBLE TO 3215 02:13:19,710 --> 02:13:28,385 SOME OF THIS DISCUSSION. 3216 02:13:28,385 --> 02:13:28,752 >> MICHELLE? 3217 02:13:28,752 --> 02:13:29,887 >> POINT OF CLARIFICATION. 3218 02:13:29,887 --> 02:13:33,023 SO WITH THE NEW THEMES, IS THERE 3219 02:13:33,023 --> 02:13:35,125 ASSUMPTION THE OLD THEMES ARE NO 3220 02:13:35,125 --> 02:13:36,327 LONGER APPLICABLE OR WHEN YOU'RE 3221 02:13:36,327 --> 02:13:37,728 SOUNDING OUT THE REQUEST FOR 3222 02:13:37,728 --> 02:13:41,999 INFORMATION ARE YOU GOING TO ASK 3223 02:13:41,999 --> 02:13:44,435 ABOUT, HEY, THESE THEMES WE HAD, 3224 02:13:44,435 --> 02:13:46,203 WHAT SHOULD STILL CONTINUE AND 3225 02:13:46,203 --> 02:13:48,038 THEN WHAT SHOULD BE NEW OR 3226 02:13:48,038 --> 02:13:49,373 WHAT'S OBSOLETE? 3227 02:13:49,373 --> 02:13:50,874 WAS THAT THE PLAN? 3228 02:13:50,874 --> 02:13:52,509 JUST WANTED TO CLARIFY. 3229 02:13:52,509 --> 02:13:54,178 >> I HAVEN'T WRITTEN THE RFI BUT 3230 02:13:54,178 --> 02:13:56,146 THAT SOUNDS LIKE A PRETTY GOOD 3231 02:13:56,146 --> 02:13:56,347 START. 3232 02:13:56,347 --> 02:13:59,216 THIS IS WHERE WE ARE. 3233 02:13:59,216 --> 02:14:00,985 I HAVE SOME IDEAS WHAT I THINK 3234 02:14:00,985 --> 02:14:04,355 NEW THEMES ARE BUT WHAT DO I 3235 02:14:04,355 --> 02:14:05,756 KNOW, RIGHT? 3236 02:14:05,756 --> 02:14:13,230 SO, YES, I DON'T EXPECT IT WILL 3237 02:14:13,230 --> 02:14:13,697 BE WHOLE NEW. 3238 02:14:13,697 --> 02:14:14,331 >> LEWIS? 3239 02:14:14,331 --> 02:14:15,399 >> SORRY. 3240 02:14:15,399 --> 02:14:16,266 HI, EVERYONE. 3241 02:14:16,266 --> 02:14:17,368 GREAT PRESENTATION. 3242 02:14:17,368 --> 02:14:18,902 REALLY THOUGHTFUL. 3243 02:14:18,902 --> 02:14:21,538 I WAS CURIOUS, MORE OF A COMMENT 3244 02:14:21,538 --> 02:14:23,941 THAN A QUESTION, BUT AS RELATES 3245 02:14:23,941 --> 02:14:25,476 TO DEVELOPMENT OF THESE THEMES 3246 02:14:25,476 --> 02:14:27,978 WHICH I THINK IS -- I THINK YOUR 3247 02:14:27,978 --> 02:14:29,313 WORKFLOW IDEA IS REALLY GOOD. 3248 02:14:29,313 --> 02:14:33,350 ONE OF THE THINGS THAT I WAS 3249 02:14:33,350 --> 02:14:34,318 THINKING ABOUT PAST COUPLE YEARS 3250 02:14:34,318 --> 02:14:37,721 OF GOING TO THE PUBLIC HEALTH 3251 02:14:37,721 --> 02:14:39,890 ASSOCIATION ANNUAL MEETING, AND 3252 02:14:39,890 --> 02:14:41,992 SEVERAL TIMES IN THAT MEETING 3253 02:14:41,992 --> 02:14:44,728 IT'S COME UP ABOUT HOW KIND OF 3254 02:14:44,728 --> 02:14:46,263 THE REHABILITATION RESEARCH IS 3255 02:14:46,263 --> 02:14:47,898 TRADITIONALLY YOU KNOW KIND OF 3256 02:14:47,898 --> 02:14:50,501 FUNDED THROUGH PORTFOLIOS THAT 3257 02:14:50,501 --> 02:14:52,169 YOU DISCUSSED HERE, THERE'S A 3258 02:14:52,169 --> 02:14:54,772 PERCEPTION IT DOESN'T ALWAYS 3259 02:14:54,772 --> 02:14:56,006 ALIGN WITH PUBLIC HEALTH 3260 02:14:56,006 --> 02:14:58,175 INTERESTS AS FAR AS APHA WOULD 3261 02:14:58,175 --> 02:14:59,910 KIND OF THINK ABOUT THAT. 3262 02:14:59,910 --> 02:15:01,879 AND IT REALLY STRUCK ME WHEN YOU 3263 02:15:01,879 --> 02:15:03,180 WERE TALKING ABOUT DEVELOPING 3264 02:15:03,180 --> 02:15:07,818 THEMES AND MAYBE THINKING ABOUT 3265 02:15:07,818 --> 02:15:12,322 A THEME FOCUSED ON HEALTH 3266 02:15:12,322 --> 02:15:13,724 DISPARITIES, DEFINITE A 3267 02:15:13,724 --> 02:15:15,793 NARRATIVE APHA DEVELOPED, A COOL 3268 02:15:15,793 --> 02:15:17,661 IDEA TO THINK ABOUT WAYS IN 3269 02:15:17,661 --> 02:15:19,630 WHICH WE CAN BRING THESE FIELDS 3270 02:15:19,630 --> 02:15:22,366 TOGETHER A LITTLE BIT MORE 3271 02:15:22,366 --> 02:15:22,666 INTIMATELY. 3272 02:15:22,666 --> 02:15:24,501 I KNOW THERE'S A LOT OF FOLKS 3273 02:15:24,501 --> 02:15:27,171 THAT ARE IN THE, YOU KNOW, 3274 02:15:27,171 --> 02:15:28,605 PUBLIC HEALTH WORLD THAT ARE 3275 02:15:28,605 --> 02:15:32,109 REALLY INTERESTED IN KIND OF 3276 02:15:32,109 --> 02:15:33,844 THOSE EXECUTABLE SCIENTIFIC 3277 02:15:33,844 --> 02:15:35,279 QUESTIONS, BUT DON'T NECESSARILY 3278 02:15:35,279 --> 02:15:36,280 SEE STRONG WAYS TO COLLABORATE 3279 02:15:36,280 --> 02:15:37,347 WITH PEOPLE THAT ARE REALLY 3280 02:15:37,347 --> 02:15:39,850 INTERESTED IN THOSE KIND OF 3281 02:15:39,850 --> 02:15:40,751 SCIENTIFICALLY EXECUTABLE SORTS 3282 02:15:40,751 --> 02:15:41,618 OF QUESTIONS. 3283 02:15:41,618 --> 02:15:44,455 ALSO JUST A THOUGHT AS MAYBE 3284 02:15:44,455 --> 02:15:45,989 WE'RE GOING ALONG, WAYS IN WHICH 3285 02:15:45,989 --> 02:15:48,492 WE CAN, YOU KNOW, BRING THOSE 3286 02:15:48,492 --> 02:15:52,663 FOLKS TO THE TABLE, THINKING 3287 02:15:52,663 --> 02:15:55,833 ABOUT IDEATING RESEARCH THEMES 3288 02:15:55,833 --> 02:15:57,468 COULD BE COOL, BUT ALSO, YOU 3289 02:15:57,468 --> 02:15:59,903 KNOW, WAYS WE CAN BROADEN OUR 3290 02:15:59,903 --> 02:16:02,606 PORTFOLIO IN THE WAY YOU 3291 02:16:02,606 --> 02:16:04,007 SUGGESTED. 3292 02:16:04,007 --> 02:16:06,143 >> YEAH, ABSOLUTELY, LEWIS. 3293 02:16:06,143 --> 02:16:12,616 I BELIEVE IT WAS APHA THAT 3294 02:16:12,616 --> 02:16:14,251 INVITED LISA IZONI AND ALISON 3295 02:16:14,251 --> 02:16:15,919 CERNICH TO GIVE A WEBINAR A 3296 02:16:15,919 --> 02:16:18,655 COUPLE MONTHS AGO ABOUT 3297 02:16:18,655 --> 02:16:19,890 INTERSECTION OF DISABILITY. 3298 02:16:19,890 --> 02:16:23,393 YES, I THINK THAT'S AN AREA 3299 02:16:23,393 --> 02:16:26,230 WHERE WE NEED TO DO MORE. 3300 02:16:26,230 --> 02:16:28,398 WE'VE PUT OUT TRADITIONAL I 3301 02:16:28,398 --> 02:16:31,602 WOULD SAY DISSEMINATION AND 3302 02:16:31,602 --> 02:16:32,569 IMPLEMENTATION REQUESTS FOR 3303 02:16:32,569 --> 02:16:33,670 APPLICATIONS, WE HAVEN'T GOTTEN 3304 02:16:33,670 --> 02:16:33,971 A LOT. 3305 02:16:33,971 --> 02:16:36,740 BUT I THINK WE'RE IN A DIFFERENT 3306 02:16:36,740 --> 02:16:40,677 PLACE AND WE'RE USING DIFFERENT 3307 02:16:40,677 --> 02:16:41,645 LANGUAGES, AND WE'RE 3308 02:16:41,645 --> 02:16:42,412 CONCEPTUALIZING DIFFERENT. 3309 02:16:42,412 --> 02:16:44,281 I WOULD BE VERY, VERY SURPRISED 3310 02:16:44,281 --> 02:16:48,986 IF WE DIDN'T HAVE A THEME THAT 3311 02:16:48,986 --> 02:16:51,522 HITS THOSE. 3312 02:16:51,522 --> 02:16:52,289 JOSE AND THEN SHERRY. 3313 02:16:52,289 --> 02:16:54,124 IF YOU WANT TO PUT YOUR THINGS 3314 02:16:54,124 --> 02:16:59,396 UP SO WE CAN SEE. 3315 02:16:59,396 --> 02:17:01,431 >> SO, SHOULD I GO FIRST? 3316 02:17:01,431 --> 02:17:03,767 THANK YOU FOR THAT PRESENTATION. 3317 02:17:03,767 --> 02:17:11,308 A COUPLE THOUGHTS. 3318 02:17:11,308 --> 02:17:13,944 WE HAVE THE RFI, BUT SO A 3319 02:17:13,944 --> 02:17:16,346 SUGGESTION WOULD BE IN ADDITION 3320 02:17:16,346 --> 02:17:19,616 TO THAT, IS THE POSSIBILITY OF 3321 02:17:19,616 --> 02:17:21,818 HAVING NO ONE CONFERENCE BUT 3322 02:17:21,818 --> 02:17:25,956 HAVE WHERE, YOU KNOW, HAVE SOME 3323 02:17:25,956 --> 02:17:32,863 LOCAL CONFERENCES WHERE YOU CAN 3324 02:17:32,863 --> 02:17:33,597 INCREASE PARTICIPATION THAN JUST 3325 02:17:33,597 --> 02:17:34,698 SELECT PEOPLE. 3326 02:17:34,698 --> 02:17:41,238 THAT'S WHY. 3327 02:17:41,238 --> 02:17:43,674 AND SECOND, YOU KNOW, THE 3328 02:17:43,674 --> 02:17:45,309 CONFERENCE SO WE STILL HAVE 3329 02:17:45,309 --> 02:17:49,680 POSSIBILITY FOR PEOPLE TO BRING 3330 02:17:49,680 --> 02:17:52,316 IDEAS, MAYBE AT THAT PLACE WE 3331 02:17:52,316 --> 02:17:54,818 CAN REFINE AND COME WITH SOME 3332 02:17:54,818 --> 02:17:56,453 THEMES. 3333 02:17:56,453 --> 02:17:58,188 JUST TO BE OPEN. 3334 02:17:58,188 --> 02:18:03,460 THE SECOND COMMENT IS REGARDING, 3335 02:18:03,460 --> 02:18:05,095 YOU KNOW, POTENTIAL NEW THEMES, 3336 02:18:05,095 --> 02:18:05,529 RIGHT? 3337 02:18:05,529 --> 02:18:09,566 I WANT TO BRING ONE PARTICULAR 3338 02:18:09,566 --> 02:18:13,303 TOPIC BECAUSE I'VE BEEN WORKING 3339 02:18:13,303 --> 02:18:16,039 ON THIS WHICH IS BRAIN-COMPUTER 3340 02:18:16,039 --> 02:18:16,306 INTERFACE. 3341 02:18:16,306 --> 02:18:19,443 DO WE KNOW HOW MANY PEOPLE HAVE 3342 02:18:19,443 --> 02:18:21,812 BEEN IMPLANTED TO DATE, HOW LONG 3343 02:18:21,812 --> 02:18:25,349 THE ELECTRODES LAST, WHAT ARE 3344 02:18:25,349 --> 02:18:30,687 THE GAPS? 3345 02:18:30,687 --> 02:18:34,858 AND GIVEN ADVANCEMENTS, EVEN NEW 3346 02:18:34,858 --> 02:18:38,262 THINGS OUT THERE, AND GOAL FOR 3347 02:18:38,262 --> 02:18:40,530 REHAB, RIGHT, THAT MAY BE ONE 3348 02:18:40,530 --> 02:18:51,074 OPPORTUNITY TO REALLY PUSH THIS 3349 02:18:53,844 --> 02:18:54,011 FIELD. 3350 02:18:54,011 --> 02:18:57,748 SO THAT'S ONE THEME I WOULD -- 3351 02:18:57,748 --> 02:18:58,148 YOU KNOW. 3352 02:18:58,148 --> 02:18:59,816 >> I WILL SAY THAT BECAUSE THIS 3353 02:18:59,816 --> 02:19:01,985 IS GOING TO BE ACROSS NIH, IT'S 3354 02:19:01,985 --> 02:19:03,654 GOING TO BE -- THE THEMES ARE 3355 02:19:03,654 --> 02:19:05,555 GOING TO BE DISEASE AGNOSTIC. 3356 02:19:05,555 --> 02:19:07,257 NOW, WHETHER THERE'S A BULLET 3357 02:19:07,257 --> 02:19:08,792 UNDERNEATH THAT IS HITTING ON 3358 02:19:08,792 --> 02:19:13,163 THAT IS CERTAINLY SOMETHING THAT 3359 02:19:13,163 --> 02:19:14,765 COULD BE -- 3360 02:19:14,765 --> 02:19:15,332 >> YEAH. 3361 02:19:15,332 --> 02:19:17,834 >> YEAH, OKAY. 3362 02:19:17,834 --> 02:19:18,068 SHERRY? 3363 02:19:18,068 --> 02:19:18,602 >> YES, HELLO. 3364 02:19:18,602 --> 02:19:21,038 SORRY I CAN'T BE THERE IN PERSON 3365 02:19:21,038 --> 02:19:21,338 TODAY. 3366 02:19:21,338 --> 02:19:23,206 THERESA, THANK YOU FOR THE 3367 02:19:23,206 --> 02:19:24,207 REALLY HELPFUL PRESENTATION AND 3368 02:19:24,207 --> 02:19:26,810 FORWARD LOOK AT THIS PROCESS. 3369 02:19:26,810 --> 02:19:28,578 JUST A COUPLE THOUGHTS TO PUT IN 3370 02:19:28,578 --> 02:19:31,214 OUR HEADS FOR NOW TO THINK ABOUT 3371 02:19:31,214 --> 02:19:32,616 AS IT MOVES FORWARD. 3372 02:19:32,616 --> 02:19:36,119 FIRST WOULD BE THINKING ABOUT 3373 02:19:36,119 --> 02:19:39,523 HOW TO USE THIS TWO-YEAR 3374 02:19:39,523 --> 02:19:41,058 TIMELINE AND THINKING ABOUT 3375 02:19:41,058 --> 02:19:44,561 ADVANCE PLANNING, WITH REGARD TO 3376 02:19:44,561 --> 02:19:45,862 TARGETED ENGAGEMENT WITH SOME OF 3377 02:19:45,862 --> 02:19:48,732 THE BETTER KNOWN AND WELL 3378 02:19:48,732 --> 02:19:50,133 ORGANIZED COMMUNITY ADVOCACY 3379 02:19:50,133 --> 02:19:55,939 GROUPS, LIKE UNITED SPINAL, 3380 02:19:55,939 --> 02:19:58,108 UNITED CP, AND SOUNDS LIKE 3381 02:19:58,108 --> 02:20:01,011 THERE'S IDEAS ABOUT CREATIVE 3382 02:20:01,011 --> 02:20:06,016 MEETING FORMATS, COULD THERE BE 3383 02:20:06,016 --> 02:20:08,085 A ROUNDTABLE OF LEADERS FROM THE 3384 02:20:08,085 --> 02:20:09,052 ORGANIZATIONS, FOR EXAMPLE, ONCE 3385 02:20:09,052 --> 02:20:10,854 THE PLAN IS IN THE SECOND RFI 3386 02:20:10,854 --> 02:20:12,556 PERIOD OR SOMETHING OF THE SORT 3387 02:20:12,556 --> 02:20:15,092 SO THAT GROUP, THOSE LEADERS CAN 3388 02:20:15,092 --> 02:20:16,059 REALLY OFFER THEIR LIVED 3389 02:20:16,059 --> 02:20:19,029 EXPERIENCE WHICH I THINK WOULD 3390 02:20:19,029 --> 02:20:21,098 BE REALLY RICH WAY OF INFORMING 3391 02:20:21,098 --> 02:20:22,966 OVERALL PLAN. 3392 02:20:22,966 --> 02:20:24,801 AND THEN THE OTHER THOUGHT TO 3393 02:20:24,801 --> 02:20:26,336 PUT FORWARD FOR CONSIDERATION 3394 02:20:26,336 --> 02:20:27,871 WOULD BE TO THINK ABOUT WITH 3395 02:20:27,871 --> 02:20:29,539 SOME OF THESE BIG MILESTONES 3396 02:20:29,539 --> 02:20:31,842 THAT HAVE BEEN REACHED, FOR 3397 02:20:31,842 --> 02:20:36,747 EXAMPLE, DESIGNATION AS A HEALTH 3398 02:20:36,747 --> 02:20:38,181 DISPARITIES POPULATION, SO 3399 02:20:38,181 --> 02:20:39,015 INCREDIBLE AND SO 3400 02:20:39,015 --> 02:20:42,352 GROUND-BREAKING, THINKING ABOUT, 3401 02:20:42,352 --> 02:20:45,622 YOU KNOW, COULD INNOVATIVE 3402 02:20:45,622 --> 02:20:47,190 CONFERENCE FORMAT OR AN EVENT AT 3403 02:20:47,190 --> 02:20:49,126 DIFFERENT TIME BE BROUGHT 3404 02:20:49,126 --> 02:20:50,894 TOGETHER TO BRING TOGETHER TRUE 3405 02:20:50,894 --> 02:20:52,963 THOUGHT LEADERS AND HEALTH 3406 02:20:52,963 --> 02:20:54,264 DISPARITIES RESEARCH WITH TRUE 3407 02:20:54,264 --> 02:20:56,700 THOUGHT LEADERS IN REHAB TO 3408 02:20:56,700 --> 02:20:58,435 THINK ABOUT WHERE DO WE FIND 3409 02:20:58,435 --> 02:21:00,303 SYNERGIES IN A POWERFUL WAY. 3410 02:21:00,303 --> 02:21:02,706 SO A COUPLE IDEAS FOR THE 3411 02:21:02,706 --> 02:21:04,908 CONFERENCE. 3412 02:21:04,908 --> 02:21:07,077 I MIGHT BE ROLLING OFF OR 3413 02:21:07,077 --> 02:21:12,115 CLEARLY I WOULD SIGN UP FOR THE 3414 02:21:12,115 --> 02:21:12,582 PLANNING GROUP. 3415 02:21:12,582 --> 02:21:15,619 >> WE'LL TAKE PEOPLE ROLLING OFF 3416 02:21:15,619 --> 02:21:17,487 IF THEY STILL WANT TO HELP. 3417 02:21:17,487 --> 02:21:22,726 THANK YOU, CHERI, FOR THE 3418 02:21:22,726 --> 02:21:23,026 SUGGESTIONS. 3419 02:21:23,026 --> 02:21:23,460 >> THANKS, THERESA. 3420 02:21:23,460 --> 02:21:23,760 >> KATHLEEN? 3421 02:21:23,760 --> 02:21:26,329 >> THANK YOU. 3422 02:21:26,329 --> 02:21:28,331 YES, I LIKE THIS IDEA HAVING 3423 02:21:28,331 --> 02:21:29,666 SMALL MEETINGS LOCALLY BECAUSE 3424 02:21:29,666 --> 02:21:35,138 YOU GET DIFFERENT DISCUSSION IN 3425 02:21:35,138 --> 02:21:35,472 PERSON. 3426 02:21:35,472 --> 02:21:37,641 I THINK YOU DO GET DIFFERENT 3427 02:21:37,641 --> 02:21:39,176 DISCUSSION IN PERSON AS WE'VE 3428 02:21:39,176 --> 02:21:41,044 ALL LEARNED FROM COVID. 3429 02:21:41,044 --> 02:21:44,414 BUT I ALSO -- ANOTHER -- A 3430 02:21:44,414 --> 02:21:44,748 COUPLE IDEAS. 3431 02:21:44,748 --> 02:21:46,716 I THINK IF I COULD PUT ANY 3432 02:21:46,716 --> 02:21:49,252 THEMES FORWARD, SOME KIND OF 3433 02:21:49,252 --> 02:21:51,755 FOCUS ON HOW YOU CHANGE 3434 02:21:51,755 --> 02:21:56,026 BEHAVIORS, NOT A NEW IDEA BUT A 3435 02:21:56,026 --> 02:21:57,194 BIG PROBLEM, WE MIGHT 3436 02:21:57,194 --> 02:21:58,061 INTERVENTIONS THAT WORK, HOW DO 3437 02:21:58,061 --> 02:21:59,830 YOU GET PEOPLE TO DO THEM NOT 3438 02:21:59,830 --> 02:22:01,698 JUST DURING THE STUDY BUT KEEP 3439 02:22:01,698 --> 02:22:04,000 DOING THEM, THAT KIND OF IDEA. 3440 02:22:04,000 --> 02:22:06,837 THIS WOULD ALLOW US TO ADDRESS 3441 02:22:06,837 --> 02:22:07,404 MODIFIABLE FACTORS, SOCIAL 3442 02:22:07,404 --> 02:22:08,605 DETERMINANTS OF HEALTH, THAT 3443 02:22:08,605 --> 02:22:10,240 KIND OF THING. 3444 02:22:10,240 --> 02:22:14,077 ANOTHER AREA THAT I THINK I'VE 3445 02:22:14,077 --> 02:22:17,047 HEARD A LOT OF ISSUES, WE HAVE 3446 02:22:17,047 --> 02:22:19,115 RESEARCH THAT THE STUDIES ARE 3447 02:22:19,115 --> 02:22:20,450 OFTEN VERY SMALL. 3448 02:22:20,450 --> 02:22:22,185 DIFFICULT TO GET FUNDING. 3449 02:22:22,185 --> 02:22:24,354 IT'S HARD TO GET PARTICIPANTS IN 3450 02:22:24,354 --> 02:22:26,223 THESE VARIOUS SPECIFIC AREAS 3451 02:22:26,223 --> 02:22:28,525 THAT WE'RE LOOKING FOR, IF WE 3452 02:22:28,525 --> 02:22:30,727 COULD FOCUS ON CREATIVE DESIGNS 3453 02:22:30,727 --> 02:22:33,330 OR DESIGNS THAT ALLOW PEOPLE TO 3454 02:22:33,330 --> 02:22:34,965 WORK TOGETHER COLLABORATIVELY 3455 02:22:34,965 --> 02:22:36,733 FROM AFAR, WITH LIMITED FUNDING, 3456 02:22:36,733 --> 02:22:38,034 AND I THINK FROM WHAT I 3457 02:22:38,034 --> 02:22:39,369 UNDERSTAND THERE ARE SOME 3458 02:22:39,369 --> 02:22:41,104 POSSIBILITIES IN THAT AREA. 3459 02:22:41,104 --> 02:22:42,639 AND LAST, I WOULD BE INTERESTED 3460 02:22:42,639 --> 02:22:48,211 IN BEING PART OF THE RESEARCH 3461 02:22:48,211 --> 02:22:49,880 PLAN WORK GROUP. 3462 02:22:49,880 --> 02:22:52,582 >> SO, THANK YOU. 3463 02:22:52,582 --> 02:22:55,218 DR. BIANCHI MENTIONED JANE 3464 02:22:55,218 --> 02:22:57,754 SIMONI, NEW OBSSR, I HAVE MET 3465 02:22:57,754 --> 02:22:59,623 WITH HER IN PERSON TO SAY THIS 3466 02:22:59,623 --> 02:23:00,790 IS PERSON FOR REHAB. 3467 02:23:00,790 --> 02:23:02,425 THEY HAVE SEVERAL PEOPLE ON 3468 02:23:02,425 --> 02:23:04,194 STAFF WHO ARE WORKING IN 3469 02:23:04,194 --> 02:23:06,062 DISABILITY AND BEHAVIORAL AND 3470 02:23:06,062 --> 02:23:06,930 SOCIAL SCIENCE. 3471 02:23:06,930 --> 02:23:09,099 WE'RE WORKING THAT WAY. 3472 02:23:09,099 --> 02:23:10,534 I TOTALLY AGREE. 3473 02:23:10,534 --> 02:23:12,636 AND, YEAH, I DON'T KNOW HOW 3474 02:23:12,636 --> 02:23:15,038 WE'LL GET AROUND NOT TALKING 3475 02:23:15,038 --> 02:23:18,008 ABOUT CLINICAL TRIAL DESIGN SO 3476 02:23:18,008 --> 02:23:22,712 YOU'RE RIGHT ON. 3477 02:23:22,712 --> 02:23:24,915 >> I AGREE WITH EVERYTHING I'VE 3478 02:23:24,915 --> 02:23:27,851 HEARD AND WANT TO JUST EXPAND ON 3479 02:23:27,851 --> 02:23:29,185 THIS IDEA WHO ELSE SHOULD BE AT 3480 02:23:29,185 --> 02:23:30,587 THE TABLE IN PLANNING. 3481 02:23:30,587 --> 02:23:35,525 I KEEP THINKING ABOUT 3482 02:23:35,525 --> 02:23:36,493 IMPLEMENTATION SCIENTISTS, NOT 3483 02:23:36,493 --> 02:23:36,826 RESEARCH. 3484 02:23:36,826 --> 02:23:39,462 WHAT CAN WE LEARN FROM THEM WHAT 3485 02:23:39,462 --> 02:23:43,199 MIGHT MOVE THE FIELD FORWARD IN 3486 02:23:43,199 --> 02:23:45,302 GETTING EVIDENCE-BASED 3487 02:23:45,302 --> 02:23:46,269 INTERVENTIONS DEVELOPED INTO 3488 02:23:46,269 --> 02:23:48,872 PRACTICE BECAUSE WE KNOW IF YOU 3489 02:23:48,872 --> 02:23:49,673 DESIGN WITH IMPLEMENTATION FOCUS 3490 02:23:49,673 --> 02:23:51,074 ON A CLINICAL TRIAL, IT'S MORE 3491 02:23:51,074 --> 02:23:52,709 LIKELY IT WILL BE MORE RELEVANT 3492 02:23:52,709 --> 02:23:54,811 TO YOUR COMMUNITY AND I THINK 3493 02:23:54,811 --> 02:23:56,546 THAT REALLY DOES GO ALONG WITH 3494 02:23:56,546 --> 02:23:58,348 THE OTHER THEME WE'RE HEARING, 3495 02:23:58,348 --> 02:24:00,150 ANOTHER THEME, ONE OF MANY, 3496 02:24:00,150 --> 02:24:01,051 AROUND GETTING THE RIGHT PEOPLE 3497 02:24:01,051 --> 02:24:03,119 AT THE TABLE FROM PEOPLE WHO 3498 02:24:03,119 --> 02:24:05,522 REPRESENT THE GROUPS THAT WE'RE 3499 02:24:05,522 --> 02:24:07,390 DOING RESEARCH ON SO GETTING 3500 02:24:07,390 --> 02:24:08,925 ADVOCATES, ALL SORTS OF PEOPLE 3501 02:24:08,925 --> 02:24:10,760 WHO HAVE INTEREST IN WHAT WE DO 3502 02:24:10,760 --> 02:24:13,196 AND WILL BE USING WHAT WE DO IN 3503 02:24:13,196 --> 02:24:14,497 THEIR CLINICAL PRACTICE OR IN 3504 02:24:14,497 --> 02:24:15,031 THEIR LIVES. 3505 02:24:15,031 --> 02:24:16,800 ONE OTHER THING TO MENTION I'VE 3506 02:24:16,800 --> 02:24:20,870 BEEN PART OF TWO WORK GROUPS. 3507 02:24:20,870 --> 02:24:22,706 YOU MAKE IT EASY, THERESA, WITH 3508 02:24:22,706 --> 02:24:25,575 THE TEAM, IT'S A FUN WAY TO GET 3509 02:24:25,575 --> 02:24:27,444 TO KNOW A SMALLER GROUP IN THE 3510 02:24:27,444 --> 02:24:29,079 PEOPLE IN THE BOARD, AT NIH, 3511 02:24:29,079 --> 02:24:31,715 IT'S NOT A HEAVY LIFT TO ATTEND. 3512 02:24:31,715 --> 02:24:41,524 I'LL PUT THAT PLUG IN FOR YOU. 3513 02:24:41,524 --> 02:24:43,526 >> FIRST OF ALL, SINCE WE KNOW 3514 02:24:43,526 --> 02:24:45,495 EACH OTHER FAIRLY WELL, YOU CAN 3515 02:24:45,495 --> 02:24:46,796 PLACE ME WHERE YOU THINK I'M 3516 02:24:46,796 --> 02:24:49,766 GOING TO BE OF MOST VALUE, I'LL 3517 02:24:49,766 --> 02:24:53,370 PUT IT THAT WAY. 3518 02:24:53,370 --> 02:24:57,907 AS THE THEMES GEL AND THINGS GET 3519 02:24:57,907 --> 02:25:00,677 FORMED, I'M HAPPY TO ASSIST WITH 3520 02:25:00,677 --> 02:25:03,980 PEOPLE, IDEAS, WHO COULD FIT 3521 02:25:03,980 --> 02:25:06,049 THOSE DIFFERENT KNOWLEDGE BASE 3522 02:25:06,049 --> 02:25:07,951 SME TYPES BECAUSE OF THE SPACE 3523 02:25:07,951 --> 02:25:10,353 THAT I'M IN AND THE RESEARCH 3524 02:25:10,353 --> 02:25:12,222 THAT V.A. COVERS SO I'M SURE I 3525 02:25:12,222 --> 02:25:15,725 CAN THINK OF PEOPLE TO CONSIDER 3526 02:25:15,725 --> 02:25:20,563 IN EVERY DOMAIN FOR YOU. 3527 02:25:20,563 --> 02:25:30,740 SO YEAH. 3528 02:25:42,285 --> 02:25:51,761 >> THIS SOUNDS VERY MAYBE OLD 3529 02:25:51,761 --> 02:25:54,264 SCHOOL BUT THE ABILITY TO 3530 02:25:54,264 --> 02:25:55,665 TRANSLATE OR GENERALIZE FROM THE 3531 02:25:55,665 --> 02:25:58,735 CLINIC TO THE COMMUNITY I STILL 3532 02:25:58,735 --> 02:25:59,969 THINK IT'S THE MAJOR PERSISTENT 3533 02:25:59,969 --> 02:26:06,309 PROBLEM THAT WE HAVE IN MANY 3534 02:26:06,309 --> 02:26:08,845 AREAS OF REHABILITATION. 3535 02:26:08,845 --> 02:26:11,014 THE OTHER THING, WHAT KATHY WAS 3536 02:26:11,014 --> 02:26:11,848 SEEING, RELATIONSHIP BETWEEN 3537 02:26:11,848 --> 02:26:13,750 LEARNING MECHANISMS AND RESPONSE 3538 02:26:13,750 --> 02:26:14,617 TO REHABILITATION IS SOMETHING 3539 02:26:14,617 --> 02:26:17,587 THAT'S, YOU KNOW, I THINK 3540 02:26:17,587 --> 02:26:19,723 CRITICALLY IMPORTANT. 3541 02:26:19,723 --> 02:26:21,591 >> THANK YOU. 3542 02:26:21,591 --> 02:26:21,858 MICHELLE? 3543 02:26:21,858 --> 02:26:24,894 >> YEAH, I WANTED TO THROW IN A 3544 02:26:24,894 --> 02:26:25,428 THEME. 3545 02:26:25,428 --> 02:26:26,529 YOU MENTIONED IT BUT I'VE BEEN 3546 02:26:26,529 --> 02:26:29,399 DOING A LOT OF WORK IN HIV AND 3547 02:26:29,399 --> 02:26:31,935 INFECTIOUS DISEASE AND HOW THAT 3548 02:26:31,935 --> 02:26:33,436 CAUSES NON-TRAUMATIC BRAIN 3549 02:26:33,436 --> 02:26:34,104 INJURY. 3550 02:26:34,104 --> 02:26:36,606 AND I THINK SOMETHING ALONG 3551 02:26:36,606 --> 02:26:39,442 THIS, AND THEN WITH COVID-19 3552 02:26:39,442 --> 02:26:40,777 COMING UP, TALKING ABOUT LONG 3553 02:26:40,777 --> 02:26:43,046 COVID, SOMETHING DEALING WITH 3554 02:26:43,046 --> 02:26:44,380 INTERSECTION BETWEEN INFECTIOUS 3555 02:26:44,380 --> 02:26:45,915 DISEASE AND REHABILITATION, AND 3556 02:26:45,915 --> 02:26:47,884 THE NEED, BECAUSE PEOPLE WITH 3557 02:26:47,884 --> 02:26:49,886 HIV THEY DON'T REALLY ASSIGN 3558 02:26:49,886 --> 02:26:50,286 THEM FOR REHAB. 3559 02:26:50,286 --> 02:26:53,256 AND SO, YOU KNOW, THERE'S A LOT 3560 02:26:53,256 --> 02:26:55,692 OF NEGLECT OF THESE GROUPS 3561 02:26:55,692 --> 02:26:58,094 BECAUSE THE LITERATURE IS NOT 3562 02:26:58,094 --> 02:27:03,767 THERE. 3563 02:27:03,767 --> 02:27:07,604 >> JUST WANTED TO ADD ONE MORE 3564 02:27:07,604 --> 02:27:08,171 POINT. 3565 02:27:08,171 --> 02:27:13,176 IF YOU NOTICE, WE'RE THE LARGEST 3566 02:27:13,176 --> 02:27:15,044 FUNDER ACROSS I.C., AND SO HAPPY 3567 02:27:15,044 --> 02:27:16,045 TO PLAY THAT ROLE. 3568 02:27:16,045 --> 02:27:19,449 BUT OF COURSE WE LOOK UP TO NCMR 3569 02:27:19,449 --> 02:27:22,952 BECAUSE THEY ARE THE BANNER 3570 02:27:22,952 --> 02:27:25,021 HOLDER FOR REHAB RESEARCH. 3571 02:27:25,021 --> 02:27:31,528 AND THEY SET THE TONE AND 3572 02:27:31,528 --> 02:27:34,864 PROVIDE INSPIRATION, AND PAY FOR 3573 02:27:34,864 --> 02:27:35,965 THOSE PROJECTS. 3574 02:27:35,965 --> 02:27:38,501 I'M LISTENING TO ALL THESE AND 3575 02:27:38,501 --> 02:27:44,174 I'M SO PLEASED TO HEAR THERE'S 3576 02:27:44,174 --> 02:27:47,143 COHESIVE THINGS FOR THE BANNER 3577 02:27:47,143 --> 02:27:57,587 AND NCMR, BE MINDFUL THE 3578 02:28:01,891 --> 02:28:03,426 IMPLEMENTATION IN OUR REHAB IS 3579 02:28:03,426 --> 02:28:06,396 IN THE HANDS OF THE PT AND OT, 3580 02:28:06,396 --> 02:28:09,265 THE VEHICLE TO DELIVER MANY 3581 02:28:09,265 --> 02:28:10,133 BEHAVIORAL INTERVENTION UNLIKE 3582 02:28:10,133 --> 02:28:11,534 YOU DISPENSE A PILL, SOMETHING 3583 02:28:11,534 --> 02:28:12,669 LIKE THAT. 3584 02:28:12,669 --> 02:28:14,838 SO THIS IS CRITICAL. 3585 02:28:14,838 --> 02:28:19,242 PART OF THAT IS MORE LEARNING, 3586 02:28:19,242 --> 02:28:20,877 ALSO DEVICE, CONNECT WITH 3587 02:28:20,877 --> 02:28:24,047 COMMUNITY, MANY OF YOU SAID. 3588 02:28:24,047 --> 02:28:28,651 SO THAT IS SOMETHING THAT THAT 3589 02:28:28,651 --> 02:28:30,019 THEME IS VERY, VERY DIFFICULT 3590 02:28:30,019 --> 02:28:32,255 FOR INSTITUTE LIKE US TO BE ON 3591 02:28:32,255 --> 02:28:34,557 THE TOP, EVEN THOUGH IT'S VERY 3592 02:28:34,557 --> 02:28:34,824 IMPORTANT. 3593 02:28:34,824 --> 02:28:38,628 SO, TO ME, THIS IS WHERE WE WILL 3594 02:28:38,628 --> 02:28:45,301 LOOK UP TO YOU FOLKS, HOW TO GET 3595 02:28:45,301 --> 02:28:47,036 THAT, WITH OBSSR, HIGHLY 3596 02:28:47,036 --> 02:28:50,773 RELEVANT REALLY TALKING ABOUT 3597 02:28:50,773 --> 02:28:52,508 NEURAL REHAB, BRAIN BEHAVIOR, SO 3598 02:28:52,508 --> 02:28:54,377 ALL THIS IS HIGHLY RELEVANT AND 3599 02:28:54,377 --> 02:28:57,413 I'M SO PLEASED TO HEAR ALL THESE 3600 02:28:57,413 --> 02:28:58,081 COMING TOGETHER. 3601 02:28:58,081 --> 02:29:02,919 THE QUESTION IS HOW WE PUT THIS 3602 02:29:02,919 --> 02:29:04,420 INTO RESEARCH PLAN WITH SOME 3603 02:29:04,420 --> 02:29:06,556 METHODOLOGY AS YOU REFERRED TO. 3604 02:29:06,556 --> 02:29:11,361 SO LOOKING FORWARD TO IT. 3605 02:29:11,361 --> 02:29:13,830 >> DAUPHINE IS BEING MODEST. 3606 02:29:13,830 --> 02:29:15,899 THANK YOU, APPRECIATE IT. 3607 02:29:15,899 --> 02:29:17,567 >> THANKS, EVERYBODY, FOR THE 3608 02:29:17,567 --> 02:29:18,768 THOUGHTFUL COMMENTS AND 3609 02:29:18,768 --> 02:29:20,169 DISCUSSION. 3610 02:29:20,169 --> 02:29:24,274 BEFORE WE MOVE TO THE NEXT 3611 02:29:24,274 --> 02:29:26,409 SECTION, I'D LIKE TO WELCOME 3612 02:29:26,409 --> 02:29:28,144 CHUCK, WHO JOINED US ONLINE, IF 3613 02:29:28,144 --> 02:29:31,881 YOU COULD SAY HELLO AND 3614 02:29:31,881 --> 02:29:32,382 INTRODUCE YOURSELF. 3615 02:29:32,382 --> 02:29:35,084 >> LET'S SEE IF IT WORKS. 3616 02:29:35,084 --> 02:29:36,419 GOOD MORNING. 3617 02:29:36,419 --> 02:29:37,887 GOOD AFTERNOON, DEPENDING WHERE 3618 02:29:37,887 --> 02:29:43,826 YOU'RE AT. 3619 02:29:43,826 --> 02:29:48,665 THIS IS CHUCK WASHBAUGA, 3620 02:29:48,665 --> 02:29:49,866 ORTHOPEDIC DIRECTOR AT NIAMS. 3621 02:29:49,866 --> 02:29:53,670 >> WE'RE GOING TO MOVE ON AND 3622 02:29:53,670 --> 02:29:57,407 GET THE REPORT FROM THE TRAINING 3623 02:29:57,407 --> 02:29:58,708 WORKING GROUP. 3624 02:29:58,708 --> 02:30:01,010 MICHELLE JOHNSON IS ASSOCIATE 3625 02:30:01,010 --> 02:30:02,712 PROFESSOR OF PHYSICAL MEDICINE 3626 02:30:02,712 --> 02:30:06,983 REHABILITATION AT THE UNIVERSITY 3627 02:30:06,983 --> 02:30:07,650 OF PENNSYLVANIA, PERELMAN SCHOOL 3628 02:30:07,650 --> 02:30:08,551 OF MEDICINE. 3629 02:30:08,551 --> 02:30:13,389 SHE'S DIRECTOR OF THE 3630 02:30:13,389 --> 02:30:14,891 REHABILITATION ROBOTICS LAB, AND 3631 02:30:14,891 --> 02:30:17,660 HER CURRENT RESEARCH FOCUSES ON 3632 02:30:17,660 --> 02:30:20,163 USING ROBOTICS TO UNDERSTAND 3633 02:30:20,163 --> 02:30:22,131 UPPER EXTREMITY DYSFUNCTION, AND 3634 02:30:22,131 --> 02:30:24,867 RECOVERY, AFTER BRAIN INJURY. 3635 02:30:24,867 --> 02:30:28,371 AND SHE HAS GRACIOUSLY AGREED TO 3636 02:30:28,371 --> 02:30:31,975 PRESENT THE WORKING GROUP 3637 02:30:31,975 --> 02:30:32,342 FINDINGS. 3638 02:30:32,342 --> 02:30:33,576 THANK YOU, MICHELLE. 3639 02:30:33,576 --> 02:30:35,378 >> THANK YOU, BARBARA. 3640 02:30:35,378 --> 02:30:38,114 LET ME PUT THESE A LITTLE 3641 02:30:38,114 --> 02:30:38,581 CLOSER. 3642 02:30:38,581 --> 02:30:41,951 SO I WOULD ECHO WHAT DON SAID 3643 02:30:41,951 --> 02:30:45,021 ABOUT THE NOT VERY HEAVY LIFTING 3644 02:30:45,021 --> 02:30:46,856 BEING INVOLVED IN THE WORKING 3645 02:30:46,856 --> 02:30:47,890 GROUP, THAT THERESA AND HER 3646 02:30:47,890 --> 02:30:53,763 GROUP DID MOST OF THE LIFTING. 3647 02:30:53,763 --> 02:30:56,366 IT WAS A PLEASURE TO BE PART OF 3648 02:30:56,366 --> 02:30:59,769 THE WORKING GROUP CONVENED TO 3649 02:30:59,769 --> 02:31:02,939 CONSIDER CHALLENGES IN TRAINING 3650 02:31:02,939 --> 02:31:05,008 AND CAREER DEVELOPMENT. 3651 02:31:05,008 --> 02:31:09,078 WHAT BEGAN, YOU CAN GO, NEXT 3652 02:31:09,078 --> 02:31:10,580 SLIDE, I KEEP FORGETTING, TO 3653 02:31:10,580 --> 02:31:11,581 BEGIN WITH BACKGROUND AND 3654 02:31:11,581 --> 02:31:14,083 METHODS, NEXT SLIDE PLEASE. 3655 02:31:14,083 --> 02:31:16,719 SO, THE ISSUE CAME UP I THINK IN 3656 02:31:16,719 --> 02:31:17,920 THE LAST MEETING WHERE WE BEGAN 3657 02:31:17,920 --> 02:31:20,656 TO TALK ABOUT WHAT WAS LIKE THE 3658 02:31:20,656 --> 02:31:23,326 HISTORY AND THAT TRAINING AND 3659 02:31:23,326 --> 02:31:30,066 CAREER DEVELOPMENT SUPPORT FOR 3660 02:31:30,066 --> 02:31:31,367 NIH REHABILITATION, SUPPORTS 3661 02:31:31,367 --> 02:31:32,935 NCMRR'S VISION, DOING A LOT OF 3662 02:31:32,935 --> 02:31:34,771 HEAVY LIFTING, 12 TO 20% OF 3663 02:31:34,771 --> 02:31:37,974 THEIR BUDGET WAS FOR THE LAST 30 3664 02:31:37,974 --> 02:31:40,676 YEARS IN THIS TRAINING AND 3665 02:31:40,676 --> 02:31:41,778 CAREER DEVELOPMENT. 3666 02:31:41,778 --> 02:31:45,181 AND THAT ON SOME LEVEL MAYBE 3667 02:31:45,181 --> 02:31:48,017 OVERFUNDING WITH RESPECT TO 3668 02:31:48,017 --> 02:31:49,852 OTHER NIH ORGANIZATIONS THAT 3669 02:31:49,852 --> 02:31:56,659 WERE ESSENTIALLY AROUND 5 TO 6%. 3670 02:31:56,659 --> 02:31:58,428 AND NCMRR TRAINEES ARE OFTEN 3671 02:31:58,428 --> 02:32:01,064 FUNDED SUBSEQUENTLY BY OTHERS. 3672 02:32:01,064 --> 02:32:05,001 SO THE QUESTION THEN, NEXT SLIDE 3673 02:32:05,001 --> 02:32:07,503 PLEASE, BUT THEN IN 2021 AND 3674 02:32:07,503 --> 02:32:09,572 2022 KIND OF NOTICING SOME 3675 02:32:09,572 --> 02:32:11,541 CHANGES IN THE LANDSCAPE THAT 3676 02:32:11,541 --> 02:32:15,044 MIGHT AFFECT WHAT WAS HAPPENING 3677 02:32:15,044 --> 02:32:25,721 AT NCMRR, SO FIRST WAS NCMRR'S 3678 02:32:25,721 --> 02:32:31,461 SUNSET FOUR INSTITUTIONAL K12 3679 02:32:31,461 --> 02:32:32,662 PROGRAMS, AND THEY ESSENTIALLY 3680 02:32:32,662 --> 02:32:34,530 EXPECTED THAT THEY WOULD THEN 3681 02:32:34,530 --> 02:32:36,933 APPLY FOR INDIVIDUAL K AWARDS. 3682 02:32:36,933 --> 02:32:40,670 SO THEN ALSO NOTICING A SHORTAGE 3683 02:32:40,670 --> 02:32:42,505 OF AVAILABLE POSTDOCS IN ORDER 3684 02:32:42,505 --> 02:32:45,708 TO FILL THE SLOTS IN THE U.S. 3685 02:32:45,708 --> 02:32:48,311 AND THAT THERE WAS ALSO ON MANY 3686 02:32:48,311 --> 02:32:50,947 CAMPUSES AND MANY OF YOU HAVE 3687 02:32:50,947 --> 02:32:54,283 EXPERIENCED IT, THE GROWING 3688 02:32:54,283 --> 02:32:59,155 LABOR MOVEMENT, A LOT OF 3689 02:32:59,155 --> 02:33:01,424 UNIONIZING OF GRADUATE STUDENTS 3690 02:33:01,424 --> 02:33:03,726 AND POSTDOC RESEARCHERS, AND 3691 02:33:03,726 --> 02:33:04,293 DEMANDING MORE MONEY FOR 3692 02:33:04,293 --> 02:33:05,728 RESEARCH, ET CETERA. 3693 02:33:05,728 --> 02:33:08,131 SO AS A RESULT, WHAT WE WERE 3694 02:33:08,131 --> 02:33:09,866 SEEING WAS A DROP IN THE 3695 02:33:09,866 --> 02:33:12,201 PROPORTION OF THE BUDGET THAT 3696 02:33:12,201 --> 02:33:15,037 SUPPORTED TRAINING AND CAREER 3697 02:33:15,037 --> 02:33:16,873 DEVELOPMENT, AT NCMRR, AND THAT 3698 02:33:16,873 --> 02:33:18,641 WAS COMING CLOSER TO WHAT 3699 02:33:18,641 --> 02:33:20,376 REGULAR NIH WAS SPENDING WHICH 3700 02:33:20,376 --> 02:33:23,112 WAS ABOUT 6%. 3701 02:33:23,112 --> 02:33:24,547 NEXT SLIDE PLEASE. 3702 02:33:24,547 --> 02:33:30,186 SO, OUR WORKING GROUP WAS 3703 02:33:30,186 --> 02:33:31,787 CHARGED IN MAY 2023 TO DISCUSS 3704 02:33:31,787 --> 02:33:33,956 THIS ISSUE. 3705 02:33:33,956 --> 02:33:37,994 SO WE HAD THREE PRIMARY CHARGES. 3706 02:33:37,994 --> 02:33:40,496 FIRST, WE WANTED TO REVIEW THE 3707 02:33:40,496 --> 02:33:42,064 CURRENT TRAINING AND CAREER 3708 02:33:42,064 --> 02:33:43,799 DEVELOPMENT LANDSCAPE AT NIH AND 3709 02:33:43,799 --> 02:33:45,535 THE OTHER AGENCIES SUPPORTING 3710 02:33:45,535 --> 02:33:48,304 REHAB RESEARCH. 3711 02:33:48,304 --> 02:33:50,273 WE WERE ALSO HAVING THE GOAL OF 3712 02:33:50,273 --> 02:33:52,041 ASSESSING CURRENT TRAINING AND 3713 02:33:52,041 --> 02:33:54,677 CAREER DEVELOPMENT NEEDS FOR THE 3714 02:33:54,677 --> 02:33:56,746 REHABILITATION COMMUNITY. 3715 02:33:56,746 --> 02:33:59,582 AND TO DEVELOP ANY STRATEGIC 3716 02:33:59,582 --> 02:34:01,584 RECOMMENDATIONS TO ADDRESS THE 3717 02:34:01,584 --> 02:34:05,121 GAPS FOR CONSIDERATION BY THE 3718 02:34:05,121 --> 02:34:06,722 NCMRR DIRECTORATE. 3719 02:34:06,722 --> 02:34:09,792 AND SO, NEXT SLIDE PLEASE. 3720 02:34:09,792 --> 02:34:11,861 SO, WE IN TERMS OF METHODS AND 3721 02:34:11,861 --> 02:34:14,063 DATA REVIEW JUST TO TALK ABOUT 3722 02:34:14,063 --> 02:34:18,768 WHAT WE DID, SO WE REVIEWED ALL 3723 02:34:18,768 --> 02:34:20,336 THE MECHANISMS, THERESA AND 3724 02:34:20,336 --> 02:34:22,405 GROUP BROUGHT TO US, TRENDS THAT 3725 02:34:22,405 --> 02:34:23,839 WERE SEEN OVER THE PAST SEVERAL 3726 02:34:23,839 --> 02:34:26,576 YEARS IN TERMS OF THE NUMBER OF 3727 02:34:26,576 --> 02:34:28,978 APPLICANTS, WHERE DID THEY GO, 3728 02:34:28,978 --> 02:34:31,614 HOW MANY K AWARDEES ENDED UP 3729 02:34:31,614 --> 02:34:33,015 BECOMING INDEPENDENT P.I.s, 3730 02:34:33,015 --> 02:34:36,852 HOW MANY OF THEM ENDED UP WITH 3731 02:34:36,852 --> 02:34:39,188 R01s, WE ALSO TALKED ABOUT -- 3732 02:34:39,188 --> 02:34:42,225 WE HAD INPUT FROM NIDILRR AND 3733 02:34:42,225 --> 02:34:44,227 V.A. DATA, SOME OF THEIR 3734 02:34:44,227 --> 02:34:46,429 PERSONNEL CAME AND GAVE 3735 02:34:46,429 --> 02:34:47,530 PRESENTATIONS ABOUT THEIR 3736 02:34:47,530 --> 02:34:48,931 TRAINING AND CAREER DEVELOPMENT 3737 02:34:48,931 --> 02:34:53,669 MECHANISMS, SO THIS WAS HELPFUL 3738 02:34:53,669 --> 02:34:55,605 TO UNDERSTAND WHERE NCMRR WAS 3739 02:34:55,605 --> 02:34:57,039 SITUATED IN THE -- WITH RESPECT 3740 02:34:57,039 --> 02:34:59,242 TO TRAINING AND CAREER 3741 02:34:59,242 --> 02:34:59,542 DEVELOPMENT. 3742 02:34:59,542 --> 02:35:02,178 NEXT SLIDE PLEASE. 3743 02:35:02,178 --> 02:35:04,046 SO, JUST TO BECOME -- PUT 3744 02:35:04,046 --> 02:35:06,215 EVERYONE IN THE SAME SPACE, IN 3745 02:35:06,215 --> 02:35:08,618 THAT THE TRAINING AND CAREER 3746 02:35:08,618 --> 02:35:11,487 DEVELOPMENT MECHANISMS THAT WERE 3747 02:35:11,487 --> 02:35:14,223 SUPPORTED ARE THE FOLLOWING T32 3748 02:35:14,223 --> 02:35:15,758 AWARDS, FOR PRE-DOCTORAL AND 3749 02:35:15,758 --> 02:35:16,626 POSTDOCTORAL FELLOWS. 3750 02:35:16,626 --> 02:35:22,431 I WANT TO SAY THEY ARE FOR MORE 3751 02:35:22,431 --> 02:35:23,633 U.S. CITIZENS AND PERMANENT 3752 02:35:23,633 --> 02:35:24,934 RESIDENCY SO THE REASON I SAY 3753 02:35:24,934 --> 02:35:26,569 THAT, THAT WILL BRING UP ONE OF 3754 02:35:26,569 --> 02:35:28,771 THE POSSIBLE ISSUES THAT WE 3755 02:35:28,771 --> 02:35:29,538 TALKED ABOUT. 3756 02:35:29,538 --> 02:35:31,841 THEN THERE ARE INDIVIDUAL 3757 02:35:31,841 --> 02:35:33,242 FELLOWSHIPS THAT PEOPLE CAN 3758 02:35:33,242 --> 02:35:37,413 OBTAIN, THESE ARE THE F31s, 3759 02:35:37,413 --> 02:35:39,715 FOR PRE-DOCTORAL AND 3760 02:35:39,715 --> 02:35:41,584 POSTDOCTORAL FELLOWS, NATIONAL 3761 02:35:41,584 --> 02:35:44,320 K12 PROGRAMS PRIMARILY FOR 3762 02:35:44,320 --> 02:35:47,290 CLINICIAN SCIENTISTS, TENURE 3763 02:35:47,290 --> 02:35:48,591 TRACK POSITIONS, REMEMBER SOME 3764 02:35:48,591 --> 02:35:52,428 OF THESE WERE SUNSETTED. 3765 02:35:52,428 --> 02:35:53,396 INDIVIDUAL MENTORED K AWARDS, 3766 02:35:53,396 --> 02:35:56,899 TENURE TRACK SCIENTISTS IN 3767 02:35:56,899 --> 02:35:57,233 REHAB. 3768 02:35:57,233 --> 02:36:02,705 R25 PROGRAMS TO TRAIN 3769 02:36:02,705 --> 02:36:04,807 GRANTSMANSHIP, DATA SCIENCE, 3770 02:36:04,807 --> 02:36:07,009 CREATE COHORTS, ENGAGE 3771 02:36:07,009 --> 02:36:07,643 ENGINEERING UNDERGRADUATES AND 3772 02:36:07,643 --> 02:36:07,877 OTHERS. 3773 02:36:07,877 --> 02:36:09,845 NEXT SLIDE PLEASE. 3774 02:36:09,845 --> 02:36:14,083 SO, WHAT WE DID WAS WE KIND OF 3775 02:36:14,083 --> 02:36:15,518 CONDUCTED AN ASSESSMENT OF 3776 02:36:15,518 --> 02:36:16,185 TRAINING PROGRAMS, TO GIVE A 3777 02:36:16,185 --> 02:36:18,788 LITTLE BIT OF SOME OF THE THINGS 3778 02:36:18,788 --> 02:36:20,389 WE THOUGHT OF. 3779 02:36:20,389 --> 02:36:23,826 THAT WE SAW THERE WERE BARRIERS 3780 02:36:23,826 --> 02:36:25,127 AND SUPPORTS TO SUCCESSFUL 3781 02:36:25,127 --> 02:36:26,195 TRAINING PROGRAMS. 3782 02:36:26,195 --> 02:36:28,431 THERE WAS A NEED TO INCREASE 3783 02:36:28,431 --> 02:36:30,599 DIVERSITY IN THE TRAINING POOL. 3784 02:36:30,599 --> 02:36:32,935 THERE WAS A LACK OF CAREERS 3785 02:36:32,935 --> 02:36:34,870 OUTSIDE OF ACADEMIA. 3786 02:36:34,870 --> 02:36:37,873 WE TALKED ABOUT A LOT OF THESE 3787 02:36:37,873 --> 02:36:38,641 TRAINING PROGRAMS, THEY REWARD 3788 02:36:38,641 --> 02:36:42,278 THE FACT THAT WE WERE ABLE TO 3789 02:36:42,278 --> 02:36:46,615 BRING PEOPLE INTO ACADEMIA BUT A 3790 02:36:46,615 --> 02:36:48,384 LOT OF NEWEST COHORTS OF 3791 02:36:48,384 --> 02:36:49,919 TRAINEES DON'T ALWAYS WANT TO GO 3792 02:36:49,919 --> 02:36:51,220 INTO ACADEMIA BUT THERE'S NO WAY 3793 02:36:51,220 --> 02:36:56,892 TO MEASURE OR TRAIN THEM FOR 3794 02:36:56,892 --> 02:36:57,226 THAT. 3795 02:36:57,226 --> 02:36:59,528 WE SAW CHALLENGES IN COMMUNITY 3796 02:36:59,528 --> 02:37:04,767 OF SUPPORT FOR OUR TRANEEES, 3797 02:37:04,767 --> 02:37:05,468 LIMITATIONS IN ELIGIBILITY 3798 02:37:05,468 --> 02:37:08,504 CRITERIA IN TERMS OF YOU HAVE TO 3799 02:37:08,504 --> 02:37:14,176 BE A U.S. CITIZEN OR PERMANENT 3800 02:37:14,176 --> 02:37:14,944 RESIDENT, WE COULDN'T TRAINING 3801 02:37:14,944 --> 02:37:16,379 STUDENTS THAT ARE FOREIGN 3802 02:37:16,379 --> 02:37:18,881 TRAINEES, WE HAVE A LOT IN OUR 3803 02:37:18,881 --> 02:37:20,416 UNIVERSITIES SO THEY CAN'T TAKE 3804 02:37:20,416 --> 02:37:21,517 ADVANTAGE OF THESE MECHANISMS. 3805 02:37:21,517 --> 02:37:26,889 NEED FOR ADDITIONAL SUPPORT TO 3806 02:37:26,889 --> 02:37:28,758 RECRUIT AND TRAIN TRAINEES WITH 3807 02:37:28,758 --> 02:37:30,393 DISABILITIES, THAT WAS A GROUP 3808 02:37:30,393 --> 02:37:33,129 THAT EVEN THOUGH THERE WERE 3809 02:37:33,129 --> 02:37:33,929 DIVERSITY SUPPLEMENTS THAT WE 3810 02:37:33,929 --> 02:37:35,765 DIDN'T HAVE A LOT OF THAT GROUP 3811 02:37:35,765 --> 02:37:37,600 OF PEOPLE WITH TRAINEES WITH 3812 02:37:37,600 --> 02:37:39,135 DISABILITY ACTUALLY TAKING 3813 02:37:39,135 --> 02:37:40,469 ADVANTAGE OF THESE. 3814 02:37:40,469 --> 02:37:45,708 AND THEN AS WELL, THE NEED TO 3815 02:37:45,708 --> 02:37:46,509 SUPPORT MENTORS' TIME, 3816 02:37:46,509 --> 02:37:48,677 PARTICULARLY MINORITIZED 3817 02:37:48,677 --> 02:37:58,387 P.I.s, IN THAT PART OF SUCCESS 3818 02:37:58,387 --> 02:37:59,722 HINGES ON AVAILABILITY, OFTEN 3819 02:37:59,722 --> 02:38:01,023 TIMES MENTORS ARE NOT 3820 02:38:01,023 --> 02:38:02,024 NECESSARILY REWARDED TO TAKE THE 3821 02:38:02,024 --> 02:38:04,960 TIME TO DO THE TRAINING. 3822 02:38:04,960 --> 02:38:06,395 NEXT SLIDE PLEASE. 3823 02:38:06,395 --> 02:38:09,899 SO, WE'LL TALK ABOUT SOME KEY 3824 02:38:09,899 --> 02:38:11,000 FINDINGS. 3825 02:38:11,000 --> 02:38:13,602 FIRST, WE NOTICED THAT NCMRR IS 3826 02:38:13,602 --> 02:38:16,872 INDEED THE LEADER AND MAIN 3827 02:38:16,872 --> 02:38:17,773 FUNDER OF REHABILITATION, 3828 02:38:17,773 --> 02:38:21,110 TRAINING AND CAREER AWARDS AT 3829 02:38:21,110 --> 02:38:24,780 NIH, FROM 1992 TO 2022, 25% OF 3830 02:38:24,780 --> 02:38:28,517 OUR AWARDS WERE MADE BY NCMRR. 3831 02:38:28,517 --> 02:38:30,753 I THINK THIS IS IMPORTANT TO 3832 02:38:30,753 --> 02:38:33,989 NOTE WE'RE DOING A LOT ALREADY. 3833 02:38:33,989 --> 02:38:37,026 FROM 1992 TO 2022 THE AVERAGE 3834 02:38:37,026 --> 02:38:40,396 PORTION OF BUDGET WAS ABOUT 15%. 3835 02:38:40,396 --> 02:38:42,164 AND THEN REMEMBER TO COMPARE 3836 02:38:42,164 --> 02:38:45,434 THAT TO WHAT NIH AVERAGES, WHICH 3837 02:38:45,434 --> 02:38:46,535 IS ABOUT 6%. 3838 02:38:46,535 --> 02:38:50,573 ANOTHER BIG FINDING IS THE 3839 02:38:50,573 --> 02:38:52,208 APPLICATIONS FOR NCMRR T32s 3840 02:38:52,208 --> 02:38:53,542 HAVE DROPPED SIGNIFICANTLY IN 3841 02:38:53,542 --> 02:38:55,744 THE PAST TEN YEARS, WHILE 3842 02:38:55,744 --> 02:38:56,712 INDIVIDUAL FELLOWSHIP 3843 02:38:56,712 --> 02:38:58,013 APPLICATIONS HAVE INCREASED. 3844 02:38:58,013 --> 02:39:01,283 AND JUST TO REMIND YOU T32s 3845 02:39:01,283 --> 02:39:05,020 ARE A BIG TRAINING OPPORTUNITY 3846 02:39:05,020 --> 02:39:09,191 FOR A LOT OF MORE CITIZENS AND 3847 02:39:09,191 --> 02:39:10,292 PERMANENT RESIDENCY BUT THERE 3848 02:39:10,292 --> 02:39:12,027 ARE BIG TRAINING OPPORTUNITIES 3849 02:39:12,027 --> 02:39:13,462 FOR REHAB. 3850 02:39:13,462 --> 02:39:15,564 VERY FEW K99 APPLICATIONS ARE 3851 02:39:15,564 --> 02:39:18,834 SUBMITTED TO OR FUNDED BY NCMRR. 3852 02:39:18,834 --> 02:39:21,036 WE TALKED ABOUT WHETHER THAT WAS 3853 02:39:21,036 --> 02:39:21,937 BECAUSE MAYBE YOU'RE NOT GETTING 3854 02:39:21,937 --> 02:39:22,972 THE WORD OUT ENOUGH. 3855 02:39:22,972 --> 02:39:25,808 THERE'S A LOT OF REASONS FOR 3856 02:39:25,808 --> 02:39:27,076 POSSIBILITY OF WHY THESE DROPS 3857 02:39:27,076 --> 02:39:29,345 IN FUNDING ARE BEING NOTICED. 3858 02:39:29,345 --> 02:39:32,448 WE ALSO TALKED ABOUT THE 3859 02:39:32,448 --> 02:39:38,654 UNADJUSTED DOLLAR AMOUNT FOR 3860 02:39:38,654 --> 02:39:48,931 NCMRR T32 AND F SUPPORT CON 3861 02:39:48,931 --> 02:39:49,932 CONSTANT. 3862 02:39:49,932 --> 02:39:53,335 IN 2022 WE SAW NCMRR SUPPORT FOR 3863 02:39:53,335 --> 02:39:55,337 INDEPENDENT Ks DID NOT OFFSET 3864 02:39:55,337 --> 02:39:58,240 AMOUNT PREVIOUSLY SPENT ON THE 3865 02:39:58,240 --> 02:39:59,608 K12s BECAUSE THEY SUNSETTED 3866 02:39:59,608 --> 02:40:01,911 BUT DIDN'T NECESSARILY RAISE THE 3867 02:40:01,911 --> 02:40:04,747 FUNDING FOR NEW Ks. 3868 02:40:04,747 --> 02:40:07,349 AND NCMRR K AWARDEES WHO 3869 02:40:07,349 --> 02:40:08,651 RECEIVED BOTH K12s AND 3870 02:40:08,651 --> 02:40:11,487 INDIVIDUAL Ks WERE MORE LIKELY 3871 02:40:11,487 --> 02:40:14,890 TO GET R01s WITHIN TEN YEARS 3872 02:40:14,890 --> 02:40:16,525 OF EITHER GROUP ALONE, SO ONE OF 3873 02:40:16,525 --> 02:40:19,495 THE KEY THINGS TO RECOGNIZE IS 3874 02:40:19,495 --> 02:40:24,733 THAT WE SUNSETTED K12 BUT THIS 3875 02:40:24,733 --> 02:40:26,669 WAS A MECHANISM THAT WAS 3876 02:40:26,669 --> 02:40:29,338 RESULTING IN INDEPENDENT 3877 02:40:29,338 --> 02:40:29,905 P.I.s. 3878 02:40:29,905 --> 02:40:31,073 NEXT SLIDE. 3879 02:40:31,073 --> 02:40:32,975 SO, THE GROUP CAME TOGETHER AND 3880 02:40:32,975 --> 02:40:35,811 WE WERE ABLE TO COME UP WITH 3881 02:40:35,811 --> 02:40:37,846 SOME RECOMMENDATIONS. 3882 02:40:37,846 --> 02:40:39,315 SO RECOMMENDATION NUMBER 1, 3883 02:40:39,315 --> 02:40:41,850 ESSENTIALLY WHAT WE'RE THINKING 3884 02:40:41,850 --> 02:40:44,019 IS NCMRR SHOULD STILL CONTINUE 3885 02:40:44,019 --> 02:40:48,724 TO LEAD IN TERMS OF FUNDING, 3886 02:40:48,724 --> 02:40:50,025 TRAINING, CAREER DEVELOPMENT 3887 02:40:50,025 --> 02:40:51,026 AMONG NIH. 3888 02:40:51,026 --> 02:40:56,498 AND WE WANT TO GET ABOVE THE 5%. 3889 02:40:56,498 --> 02:40:57,366 THAT'S TYPICAL. 3890 02:40:57,366 --> 02:40:58,567 RECOMMENDING BECAUSE THE FIELD 3891 02:40:58,567 --> 02:41:01,837 HAS MATURED WE MAY NOT NEED TO 3892 02:41:01,837 --> 02:41:03,472 GET LIKE SIGNIFICANTLY ABOVE 10% 3893 02:41:03,472 --> 02:41:09,078 AS WE WERE DOING BUT THAT WE 3894 02:41:09,078 --> 02:41:11,580 SHOULD RECOMMEND 8 TO 10% OF THE 3895 02:41:11,580 --> 02:41:19,221 NCMRR BUDGET TO GO TO Fs, 3896 02:41:19,221 --> 02:41:20,656 Ks, T32s MECHANISM, NOT THE 3897 02:41:20,656 --> 02:41:27,997 RATE THEY WERE FUNDING BEFORE, 3898 02:41:27,997 --> 02:41:29,198 PRIMARILY BECAUSE THERE'S BEEN 3899 02:41:29,198 --> 02:41:33,902 CHANGES AND INCREASES IN REHAB 3900 02:41:33,902 --> 02:41:34,770 THAT WE'VE SEEN. 3901 02:41:34,770 --> 02:41:37,539 NEXT SLIDE PLEASE. 3902 02:41:37,539 --> 02:41:42,011 SOS SECOND RECOMMENDATION WAS 3903 02:41:42,011 --> 02:41:44,313 THAT THE NABMRR SHOULD RECEIVE 3904 02:41:44,313 --> 02:41:45,714 REGULAR UPDATES, OUR GROUP HERE, 3905 02:41:45,714 --> 02:41:47,716 ABOUT WHAT'S HAPPENING IN 3906 02:41:47,716 --> 02:41:49,885 TRAINING AND CAREER LANDSCAPE 3907 02:41:49,885 --> 02:41:51,520 AND WE'RE PARTICULARLY 3908 02:41:51,520 --> 02:41:55,257 INTERESTED IN KEEPING OUR 3909 02:41:55,257 --> 02:41:56,692 FINGERS ON TRENDS OVER TIME 3910 02:41:56,692 --> 02:41:58,894 WANTING TO RECOGNIZE AND SUPPORT 3911 02:41:58,894 --> 02:41:59,862 SUCCESSFUL CAREERS IN 3912 02:41:59,862 --> 02:42:00,462 NON-TRADITIONAL RESEARCH 3913 02:42:00,462 --> 02:42:03,999 PATHWAYS THAT WE WANT TO 3914 02:42:03,999 --> 02:42:04,900 BASICALLY -- WE'RE ASKING NCMRR 3915 02:42:04,900 --> 02:42:08,103 TO TRY TO THINK ABOUT WAYS WE 3916 02:42:08,103 --> 02:42:09,271 CAN SUPPORT THOSE WHO DON'T 3917 02:42:09,271 --> 02:42:12,241 NECESSARILY WANT TO END UP IN 3918 02:42:12,241 --> 02:42:14,443 ACADEMIA WHICH ARE MAYBE AT 3919 02:42:14,443 --> 02:42:16,545 LEAST 50% OF TRAINEES RIGHT NOW 3920 02:42:16,545 --> 02:42:18,480 ARE OPTING FOR CAREERS OUTSIDE 3921 02:42:18,480 --> 02:42:21,050 OF ACADEMIA. 3922 02:42:21,050 --> 02:42:22,651 AND THAT WE WANTED REGULAR 3923 02:42:22,651 --> 02:42:27,790 PUBLIC REPORTING AND WE HOPE 3924 02:42:27,790 --> 02:42:30,325 THAT WOULD ALSO KEEP THE FIELD 3925 02:42:30,325 --> 02:42:32,928 INFORMED SO THAT THEY MIGHT 3926 02:42:32,928 --> 02:42:35,164 RESPOND TO CHANGES THAT WE'RE 3927 02:42:35,164 --> 02:42:37,766 SEEING OR TRENDS WE'RE SEEING 3928 02:42:37,766 --> 02:42:38,967 FASTER. 3929 02:42:38,967 --> 02:42:39,968 NEXT SLIDE PLEASE. 3930 02:42:39,968 --> 02:42:42,137 RECOMMENDATION 3 WE WANT TO 3931 02:42:42,137 --> 02:42:43,572 INCREASE EQUITABLE OUTREACH TO 3932 02:42:43,572 --> 02:42:45,741 INFORM TRAINEES AND MENTORS OF 3933 02:42:45,741 --> 02:42:47,076 RESOURCES AVAILABLE TO INCREASE 3934 02:42:47,076 --> 02:42:50,079 BOTH THE NUMBER AND QUALITY OF 3935 02:42:50,079 --> 02:42:51,013 TRAINEE APPLICATIONS. 3936 02:42:51,013 --> 02:42:56,385 I THINK WE SAW THAT, YOU KNOW, 3937 02:42:56,385 --> 02:42:58,887 OUR T32s DROPPING OFF BECAUSE 3938 02:42:58,887 --> 02:43:00,189 OF INFORMATION, PEOPLE NOT 3939 02:43:00,189 --> 02:43:03,492 APPLYING TO Ks OR SOME PEOPLE 3940 02:43:03,492 --> 02:43:05,127 APPLYING TO Ks, SOME 3941 02:43:05,127 --> 02:43:06,562 MINORITIZED GROUPS OR DISABILITY 3942 02:43:06,562 --> 02:43:07,529 TRAINEES ARE NOT APPLYING. 3943 02:43:07,529 --> 02:43:09,832 WE NEED TO GET THE WORD OUT IN 3944 02:43:09,832 --> 02:43:14,737 ORDER TO MAKE SURE THAT WE HAVE 3945 02:43:14,737 --> 02:43:16,305 AN EQUITABLE -- OUTREACH IS 3946 02:43:16,305 --> 02:43:16,605 EQUITABLE. 3947 02:43:16,605 --> 02:43:18,373 SOME PEOPLE KNOW, SOME PEOPLE 3948 02:43:18,373 --> 02:43:20,342 DON'T, WHAT'S GOING ON IN TERMS 3949 02:43:20,342 --> 02:43:25,914 OF HOW WE'RE REACHING THE 3950 02:43:25,914 --> 02:43:26,548 PUBLIC. 3951 02:43:26,548 --> 02:43:27,549 RECOMMENDATION 4, WE BELIEVE 3952 02:43:27,549 --> 02:43:29,518 THAT GIVEN WHAT WE SAW IN SOME 3953 02:43:29,518 --> 02:43:32,454 TRENDS THAT WE SHOULD REINSTATE 3954 02:43:32,454 --> 02:43:33,889 THE K12 PROGRAMS AND THEY WERE 3955 02:43:33,889 --> 02:43:36,425 GREAT PROGRAMS THAT WERE 3956 02:43:36,425 --> 02:43:38,527 WORKING, AND THAT WE THINK THAT 3957 02:43:38,527 --> 02:43:41,797 THE COHORTS CREATED BY THE K12 3958 02:43:41,797 --> 02:43:43,232 ARE CRUCIAL TO THE SUSTAINED 3959 02:43:43,232 --> 02:43:46,068 GROWTH OF THE FIELD AND THAT 3960 02:43:46,068 --> 02:43:50,672 MAYBE SUNSETTING THEM WAS A BIT 3961 02:43:50,672 --> 02:43:50,939 PREMATURE. 3962 02:43:50,939 --> 02:43:52,875 NEXT SLIDE PLEASE. 3963 02:43:52,875 --> 02:44:03,385 SO, RECOMMENDATION NUMBER 5 IS 3964 02:44:06,755 --> 02:44:09,391 3% OF DIVERSITY SUPPLEMENTS ARE 3965 02:44:09,391 --> 02:44:12,494 AWARDED TO PEOPLE WITH 3966 02:44:12,494 --> 02:44:12,995 DISABILITIES. 3967 02:44:12,995 --> 02:44:15,097 NOT HAPPENING AT FREQUENCY WE 3968 02:44:15,097 --> 02:44:16,732 DESIRE SO WE'RE RECOMMENDING WE 3969 02:44:16,732 --> 02:44:18,300 NEED TO ADVERTISE MORE, 3970 02:44:18,300 --> 02:44:19,701 PROVIDE -- WE'RE SAYING WE WANT 3971 02:44:19,701 --> 02:44:21,503 TO PROVIDE THESE DIVERSITY 3972 02:44:21,503 --> 02:44:22,738 SUPPLEMENTS, BUT WE NEED TO GET 3973 02:44:22,738 --> 02:44:25,707 THE WORD OUT, TO MAKE SURE THAT 3974 02:44:25,707 --> 02:44:26,942 TRAINEES WITH DISABILITIES HAVE 3975 02:44:26,942 --> 02:44:29,111 THE INFORMATION NEEDED TO BE 3976 02:44:29,111 --> 02:44:31,747 ABLE TO ACCESS THESE DIVERSITY 3977 02:44:31,747 --> 02:44:32,047 SUPPLEMENTS. 3978 02:44:32,047 --> 02:44:34,483 AND SINCE DIVERSITY SUPPLEMENTS 3979 02:44:34,483 --> 02:44:35,918 ARE OFTEN TRIGGERED BY FACULTY 3980 02:44:35,918 --> 02:44:39,054 WE NEED TO MAKE SURE THAT 3981 02:44:39,054 --> 02:44:40,255 MENTORS HAVE THE INFORMATION 3982 02:44:40,255 --> 02:44:48,497 NEEDED TO BE ABLE TO RECRUIT 3983 02:44:48,497 --> 02:44:50,132 DIVERTS TRAINEES AND TRAINEES 3984 02:44:50,132 --> 02:44:51,333 WITH DISABILITIES. 3985 02:44:51,333 --> 02:44:52,100 NEXT SLIDE. 3986 02:44:52,100 --> 02:44:56,071 RECOMMENDATION NUMBER 6 IS THAT 3987 02:44:56,071 --> 02:44:57,573 WE SHOULD BE WORKING NCMRR 3988 02:44:57,573 --> 02:44:59,641 SHOULD BE WORKING WITH OFFICE OF 3989 02:44:59,641 --> 02:45:04,813 HEALTH AND EQUITY AT NICHD TO 3990 02:45:04,813 --> 02:45:08,050 INCREASE CAREER SUPPORT TO 3991 02:45:08,050 --> 02:45:09,184 MINORITIZED POPULATIONS, AND 3992 02:45:09,184 --> 02:45:11,720 THIS KIND OF IS -- THIS 3993 02:45:11,720 --> 02:45:12,588 RECOMMENDATION GOES WITH 3994 02:45:12,588 --> 02:45:14,590 RECOMMENDATION NUMBER 5 IN SOME 3995 02:45:14,590 --> 02:45:17,860 SENSE, THE IDEA IS THAT DIVERSE 3996 02:45:17,860 --> 02:45:19,161 PERSPECTIVES AND TALENTS ARE 3997 02:45:19,161 --> 02:45:23,131 NEEDED TO ADDRESS THE MISSION OF 3998 02:45:23,131 --> 02:45:25,834 NCMRR, AND THAT WE WANT TO PUSH 3999 02:45:25,834 --> 02:45:29,905 THE DEFINITION OF DIVERSITY TO 4000 02:45:29,905 --> 02:45:32,307 INCLUDE RACE/ETHNICITY, 4001 02:45:32,307 --> 02:45:33,075 GEOGRAPHIC LOCATION, 4002 02:45:33,075 --> 02:45:35,811 DISADVANTAGED POPULATION AND LOW 4003 02:45:35,811 --> 02:45:37,212 SOCIOECONOMIC STATUS, RURAL 4004 02:45:37,212 --> 02:45:39,414 POPULATIONS, SEX AND GENDER 4005 02:45:39,414 --> 02:45:40,616 MINORITIES, PEOPLE WITH 4006 02:45:40,616 --> 02:45:41,483 DISABILITIES. 4007 02:45:41,483 --> 02:45:43,018 I THINK IN WORKING CLOSER WITH 4008 02:45:43,018 --> 02:45:45,520 THE OFFICE OF HEALTH AND EQUITY, 4009 02:45:45,520 --> 02:45:46,855 MAYBE BE ABLE TO RAISE THE 4010 02:45:46,855 --> 02:45:49,057 AMOUNT OF PEOPLE WHO ARE 4011 02:45:49,057 --> 02:45:51,627 PARTICIPATING THAT FIT THIS 4012 02:45:51,627 --> 02:45:53,962 DIVERSE CATEGORY. 4013 02:45:53,962 --> 02:45:57,232 NEXT SLIDE PLEASE. 4014 02:45:57,232 --> 02:45:59,735 SO IN CONCLUSION, I WANT TO 4015 02:45:59,735 --> 02:46:01,270 THANK EVERYONE IN THE RESEARCH 4016 02:46:01,270 --> 02:46:01,703 GROUP. 4017 02:46:01,703 --> 02:46:04,239 OF COURSE I WANT TO REALLY THANK 4018 02:46:04,239 --> 02:46:05,874 THERESA AND HER GROUP. 4019 02:46:05,874 --> 02:46:08,076 THEY WERE THE MAIN HEAVY 4020 02:46:08,076 --> 02:46:08,844 LIFTERS. 4021 02:46:08,844 --> 02:46:10,479 IT WAS A PLEASURE TO WORK WITH, 4022 02:46:10,479 --> 02:46:15,617 YOU KNOW, THE FOLKS LISTED HERE, 4023 02:46:15,617 --> 02:46:21,323 BARBARA, DAWN, ROBERT, KRISTIN, 4024 02:46:21,323 --> 02:46:23,625 FRANCISCO, PATRICIA. 4025 02:46:23,625 --> 02:46:25,861 AND THERESA, RALPH, ALICIA. 4026 02:46:25,861 --> 02:46:27,562 YEAH, IT WAS ACTUALLY REALLY 4027 02:46:27,562 --> 02:46:31,266 GREAT OPPORTUNITY TO GET TO KNOW 4028 02:46:31,266 --> 02:46:33,802 FOLKS IN THE WORKING GROUP 4029 02:46:33,802 --> 02:46:36,538 BETTER AND ALSO FIND OUT MORE 4030 02:46:36,538 --> 02:46:38,974 ABOUT WHAT NCMRR IS DOING AND 4031 02:46:38,974 --> 02:46:44,246 HOW WE CAN HELP AND HOPEFULLY 4032 02:46:44,246 --> 02:46:46,014 THIS -- WE CAN STOP THERE AND 4033 02:46:46,014 --> 02:46:49,584 TAKE QUESTIONS. 4034 02:46:49,584 --> 02:46:51,720 >> THANKS, MICHELLE. 4035 02:46:51,720 --> 02:46:54,957 YES, OPENING IT UP TO THE 4036 02:46:54,957 --> 02:47:03,532 BROADER GROUP FOR YOUR THOUGHTS, 4037 02:47:03,532 --> 02:47:05,834 INPUT. 4038 02:47:05,834 --> 02:47:09,071 OTHER CONSIDERATION. 4039 02:47:09,071 --> 02:47:11,840 >> I WANTED TO ASK QUESTIONS. 4040 02:47:11,840 --> 02:47:17,079 VERY EARLY ACTUALLY BEFORE YOU 4041 02:47:17,079 --> 02:47:20,682 HAVE RECOMMENDATION, YEAH, RIGHT 4042 02:47:20,682 --> 02:47:21,049 THERE. 4043 02:47:21,049 --> 02:47:21,350 >> THIS ONE. 4044 02:47:21,350 --> 02:47:24,319 >> SO SINCE THIS IS AN ADVISORY 4045 02:47:24,319 --> 02:47:25,153 BOARD, REALLY POSE THESE 4046 02:47:25,153 --> 02:47:30,325 QUESTIONS FOR YOU, WOULD YOU BE 4047 02:47:30,325 --> 02:47:32,961 HAPPY, SAY, AND CMR TO BE THE 4048 02:47:32,961 --> 02:47:37,566 LEADER BUT NOT MAJOR FUNDER, 4049 02:47:37,566 --> 02:47:39,868 LET'S SAY, I.C.s WILL PICK UP 4050 02:47:39,868 --> 02:47:43,572 THE TAB, REDUCE TO LET'S SAY 4051 02:47:43,572 --> 02:47:46,641 10%, HAVE YOU LOOKED INTO THAT, 4052 02:47:46,641 --> 02:47:48,777 WOULD THAT BE GOOD FOR YOU 4053 02:47:48,777 --> 02:47:49,811 MOVING FORWARD? 4054 02:47:49,811 --> 02:47:53,115 IF YOU LOOK AT OUR NINDS, WE 4055 02:47:53,115 --> 02:47:54,316 ACTUALLY -- YOU'LL BE SURPRISED 4056 02:47:54,316 --> 02:47:56,385 HOW MUCH INCREASE WE HAVE IN 4057 02:47:56,385 --> 02:47:57,152 THOSE AREAS. 4058 02:47:57,152 --> 02:47:59,688 THAT'S KIND OF JUST TO LET YOU 4059 02:47:59,688 --> 02:48:00,222 KNOW. 4060 02:48:00,222 --> 02:48:05,160 AND THE SECOND QUESTION IS 4061 02:48:05,160 --> 02:48:09,097 T32,ED SAME THING, SAME VEIN, 4062 02:48:09,097 --> 02:48:11,500 LOOKING AT OTHER I.C.s. 4063 02:48:11,500 --> 02:48:14,469 RALPH CAN CALL FOR TWO DECADES 4064 02:48:14,469 --> 02:48:16,438 FOR THIS CENTER REALLY FOCUSING 4065 02:48:16,438 --> 02:48:18,507 ON CAPACITY BUILDING. 4066 02:48:18,507 --> 02:48:21,476 AND WE'RE TRYING TO BUILD 4067 02:48:21,476 --> 02:48:22,778 THINGS. 4068 02:48:22,778 --> 02:48:25,113 WE EXPECT THINGS TO SUCCESS SEED 4069 02:48:25,113 --> 02:48:26,882 IN INVESTIGATOR INITIATED PEER 4070 02:48:26,882 --> 02:48:28,583 REVIEW, AMAZINGLY THEY ARE DOING 4071 02:48:28,583 --> 02:48:31,987 SO WELL NOW. 4072 02:48:31,987 --> 02:48:34,156 SO IF WE LEAVE THEM ALONE AND 4073 02:48:34,156 --> 02:48:36,558 WE'LL SHIFT TO OTHER THINGS, 4074 02:48:36,558 --> 02:48:38,326 WE'LL BUILD NEW THINGS, SO I 4075 02:48:38,326 --> 02:48:39,961 THINK THAT PROBABLY WOULD HAVE 4076 02:48:39,961 --> 02:48:43,565 TO TAKE THAT INTO CONSIDERATION 4077 02:48:43,565 --> 02:48:44,566 AS WELL. 4078 02:48:44,566 --> 02:48:49,704 FOR K99, IF YOU LOOK AT NINDS, 4079 02:48:49,704 --> 02:48:56,178 WE HAVE TREMENDOUS SUCCESSFUL K 4080 02:48:56,178 --> 02:48:57,145 99 FOLKS DURING NEUROIMAGING 4081 02:48:57,145 --> 02:49:00,782 PRETTY MUCH INTERFACE, LOTS OF 4082 02:49:00,782 --> 02:49:02,184 THESE COULD CATEGORIZE AS REHAB 4083 02:49:02,184 --> 02:49:03,919 AND I WILL SAY THAT WOULD BE 4084 02:49:03,919 --> 02:49:09,724 GOOD TO LOOK INTO THAT AS WELL. 4085 02:49:09,724 --> 02:49:10,926 IT IS INTERESTING, THERE'S LOTS 4086 02:49:10,926 --> 02:49:12,994 OF INTERNAL DISCUSSION ABOUT 4087 02:49:12,994 --> 02:49:17,799 WHAT KIND OF Ks TO SUNSET, 4088 02:49:17,799 --> 02:49:21,103 WHAT KIND OF Ks, SUN SET PART 4089 02:49:21,103 --> 02:49:24,706 OF IT, K12 IN OUR INSTITUTE BUT 4090 02:49:24,706 --> 02:49:30,178 RECENTLY PUT IN PLACE FOR K12 4091 02:49:30,178 --> 02:49:31,179 FOR NEUROSURGEONS, JUSTIFYING 4092 02:49:31,179 --> 02:49:32,481 PROGRAMMATIC MEANS. 4093 02:49:32,481 --> 02:49:34,449 IT MAY NOT BE ONE SIZE FITS ALL. 4094 02:49:34,449 --> 02:49:35,851 QUESTION IS WHAT DO WE EXPECT 4095 02:49:35,851 --> 02:49:38,386 FOR THIS CENTER, FOR THIS 4096 02:49:38,386 --> 02:49:40,789 CENTER, TO CONTINUE TO BUILD 4097 02:49:40,789 --> 02:49:48,230 CAPACITY FOR WHAT AREA FOR WHAT 4098 02:49:48,230 --> 02:49:50,866 PURPOSE, TOGETHER, WITH THE 4099 02:49:50,866 --> 02:49:52,267 RESOURCES ACROSS NIH, YOU KNOW, 4100 02:49:52,267 --> 02:49:54,136 WOULD BE NEEDED SO THAT WOULD BE 4101 02:49:54,136 --> 02:49:57,873 KIND OF LANDSCAPE I'M LOOKING 4102 02:49:57,873 --> 02:49:58,039 AT. 4103 02:49:58,039 --> 02:49:58,874 JUST FOR YOUR, YOU KNOW, 4104 02:49:58,874 --> 02:50:00,275 CONSIDERATION. 4105 02:50:00,275 --> 02:50:02,344 >> I JUST WANT TO SAY I DON'T 4106 02:50:02,344 --> 02:50:04,980 WANT TO HAVE TO BE THE ONLY 4107 02:50:04,980 --> 02:50:06,381 PERSON THAT'S ANSWERING BECAUSE 4108 02:50:06,381 --> 02:50:10,552 THERE'S A WHOLE WORK GROUP GOING 4109 02:50:10,552 --> 02:50:11,153 ON. 4110 02:50:11,153 --> 02:50:13,321 YOU ASKED THE QUESTION, THE 4111 02:50:13,321 --> 02:50:15,824 FIRST ONE I WANTED TO RESPOND TO 4112 02:50:15,824 --> 02:50:18,660 IS YOU MAKE A GREAT POINT IN 4113 02:50:18,660 --> 02:50:21,062 THAT WE HAVE -- NCMRR IS 4114 02:50:21,062 --> 02:50:22,931 CONSIDERED RIGHT NOW THE LEADER 4115 02:50:22,931 --> 02:50:24,299 IN SUPPORTING TRAINING AND 4116 02:50:24,299 --> 02:50:25,767 CAREER DEVELOPMENT, AND I THINK 4117 02:50:25,767 --> 02:50:28,503 IT WAS BROUGHT UP THAT, YOU 4118 02:50:28,503 --> 02:50:31,339 KNOW, A LOT OF THE WORK WAS DONE 4119 02:50:31,339 --> 02:50:33,074 BY OTHER, YOU KNOW, OTHER 4120 02:50:33,074 --> 02:50:34,176 AGENCIES AS WELL. 4121 02:50:34,176 --> 02:50:36,278 SO, YOUR POINT IS THAT IF WE 4122 02:50:36,278 --> 02:50:39,347 DROP TO 10% AND WE'RE NO LONGER 4123 02:50:39,347 --> 02:50:42,884 THE MAIN LEADERS, DOES THAT 4124 02:50:42,884 --> 02:50:43,785 AFFECT OUR PORTFOLIO? 4125 02:50:43,785 --> 02:50:45,253 I THINK -- I DIDN'T THINK ABOUT 4126 02:50:45,253 --> 02:50:48,123 IT THAT WAY BUT THAT COULD BE, 4127 02:50:48,123 --> 02:50:52,861 YOU KNOW, THAT IS AN IMPORTANT 4128 02:50:52,861 --> 02:50:53,161 QUESTION. 4129 02:50:53,161 --> 02:50:55,564 DOES IT MATTER THAT IF WE ARE -- 4130 02:50:55,564 --> 02:50:57,632 IF WE WANT TO RETAIN LEADERSHIP 4131 02:50:57,632 --> 02:50:59,634 DO WE NEED TO RETAIN THE HIGHER 4132 02:50:59,634 --> 02:51:00,402 FUNDING AS WELL? 4133 02:51:00,402 --> 02:51:02,237 THAT WAS THE FIRST ONE I WAS 4134 02:51:02,237 --> 02:51:03,138 THINKING ABOUT. 4135 02:51:03,138 --> 02:51:05,073 AND I THINK WE RECOGNIZE THAT 4136 02:51:05,073 --> 02:51:09,277 THERE'S GOING TO BE KIND OF LIKE 4137 02:51:09,277 --> 02:51:11,346 ALMOST LIKE A SINUSOIDAL STUFF 4138 02:51:11,346 --> 02:51:15,483 HAPPENING, MIGHT BE MORE T32s, 4139 02:51:15,483 --> 02:51:16,585 MORE K99s, AT LEAST THERE 4140 02:51:16,585 --> 02:51:18,987 MIGHT BE UPS AND DOWNS IN TERMS 4141 02:51:18,987 --> 02:51:21,056 OF THE FUNDING MECHANISMS BUT I 4142 02:51:21,056 --> 02:51:23,158 THINK WE RECOGNIZE THAT THESE 4143 02:51:23,158 --> 02:51:24,059 ARE IMPORTANT FUNDING MECHANISMS 4144 02:51:24,059 --> 02:51:28,496 AND WANT TO MAKE SURE THAT WE 4145 02:51:28,496 --> 02:51:31,900 CONTINUE AND THEN BECAUSE OF THE 4146 02:51:31,900 --> 02:51:32,968 FACT K12s WERE ACTUALLY WHEN 4147 02:51:32,968 --> 02:51:34,402 YOU LOOK AT THE NUMBERS THEY 4148 02:51:34,402 --> 02:51:38,139 WERE THE ONES THAT WERE 4149 02:51:38,139 --> 02:51:40,141 RESPONSIBLE FOR A LOT OF THE 4150 02:51:40,141 --> 02:51:41,543 INDEPENDENT P.I.s, I THINK 4151 02:51:41,543 --> 02:51:43,745 THAT WAS ONE REASON FOR THE 4152 02:51:43,745 --> 02:51:45,480 RECOMMENDATION THAT WE SHOULD 4153 02:51:45,480 --> 02:51:49,517 BRING THAT BACK. 4154 02:51:49,517 --> 02:51:54,456 THE FACT NINDS IS HAVING MORE 4155 02:51:54,456 --> 02:51:56,057 SUCCESS WITH K99s THAN NCMRR 4156 02:51:56,057 --> 02:51:57,425 MIGHT BE SOMETHING TO LOOK INTO 4157 02:51:57,425 --> 02:51:58,860 BUT I DON'T THINK WE'RE 4158 02:51:58,860 --> 02:52:00,595 RECOMMENDING TO GET RID OF K99 4159 02:52:00,595 --> 02:52:03,031 BUT ONE OF THE THINGS WE THOUGHT 4160 02:52:03,031 --> 02:52:04,766 WAS JUST GETTING THE WORD OUT 4161 02:52:04,766 --> 02:52:06,835 THERE WAS WHAT WAS AT THE HEART 4162 02:52:06,835 --> 02:52:09,037 OF SOME OF THE ISSUES THAT WE 4163 02:52:09,037 --> 02:52:10,372 WERE SEEING AND THAT PEOPLE 4164 02:52:10,372 --> 02:52:12,307 DIDN'T KNOW ABOUT THEM AND THAT 4165 02:52:12,307 --> 02:52:14,943 WE NEEDED TO PUT THAT OUT THERE 4166 02:52:14,943 --> 02:52:16,945 AGAIN, SO IF WE INCREASE 4167 02:52:16,945 --> 02:52:18,346 PUBLICITY MAYBE WE'LL GET 4168 02:52:18,346 --> 02:52:19,114 INCREASED NUMBERS. 4169 02:52:19,114 --> 02:52:20,982 SO THOSE WERE SOME OF THE 4170 02:52:20,982 --> 02:52:21,483 THOUGHTS. 4171 02:52:21,483 --> 02:52:26,354 BUT I WELCOME MY OTHER 4172 02:52:26,354 --> 02:52:27,722 COLLEAGUES TO CHIME IN. 4173 02:52:27,722 --> 02:52:28,757 >> I JUST WANTED TO SAY 4174 02:52:28,757 --> 02:52:32,594 SOMETHING AT THE LAST POINT ON 4175 02:52:32,594 --> 02:52:34,763 THERE THAT PEOPLE WERE K12 4176 02:52:34,763 --> 02:52:35,597 FUNDED, INDIVIDUAL K FUNDED 4177 02:52:35,597 --> 02:52:39,034 TENDED TO BE THE ONES THAT MORE 4178 02:52:39,034 --> 02:52:40,035 OFTEN GOT R01s. 4179 02:52:40,035 --> 02:52:41,803 BUT I WANT TO POINT OUT 4180 02:52:41,803 --> 02:52:45,073 SOMETHING WE TALKED ABOUT IN THE 4181 02:52:45,073 --> 02:52:45,273 GROUP. 4182 02:52:45,273 --> 02:52:46,908 AND THERE'S A SORT OF CONFLICT 4183 02:52:46,908 --> 02:52:52,514 BETWEEN THE LAST SLIDE WHERE WE 4184 02:52:52,514 --> 02:52:56,651 TALKED ABOUT THE IMPORTANCE OF 4185 02:52:56,651 --> 02:52:57,652 DIVERSITY AND GEOGRAPHICAL 4186 02:52:57,652 --> 02:52:59,054 INSTITUTIONAL DIVERSITY AND 4187 02:52:59,054 --> 02:53:00,722 THINGS LIKE THE CENTERS WHERE 4188 02:53:00,722 --> 02:53:02,891 THE K AWARDS ARE. 4189 02:53:02,891 --> 02:53:04,959 AND SO, YOU KNOW, ONE HAS TO 4190 02:53:04,959 --> 02:53:07,829 WONDER WHETHER THERE'S A CAUSAL 4191 02:53:07,829 --> 02:53:10,565 RELATIONSHIP BETWEEN K12s AND 4192 02:53:10,565 --> 02:53:12,200 EVENTUAL R01s, OR THE 4193 02:53:12,200 --> 02:53:13,401 RELATIONSHIP IS REALLY THESE 4194 02:53:13,401 --> 02:53:15,036 FOCAL CENTERS AND THE MENTORSHIP 4195 02:53:15,036 --> 02:53:16,137 THAT'S AVAILABLE THERE. 4196 02:53:16,137 --> 02:53:18,440 I KNOW THEY ARE NOT -- YOU KNOW, 4197 02:53:18,440 --> 02:53:22,177 YOU CAN'T JUST SEPARATE THESE 4198 02:53:22,177 --> 02:53:24,679 THINGS BUT, YOU KNOW, IT IS -- 4199 02:53:24,679 --> 02:53:27,415 K12s HAPPEN TO BE IN CENTERS 4200 02:53:27,415 --> 02:53:30,151 WHERE THERE'S THIS FOCUS AND 4201 02:53:30,151 --> 02:53:31,252 WHERE THERE'S THIS ELITE, YOU 4202 02:53:31,252 --> 02:53:33,755 KNOW, MEMBERSHIP. 4203 02:53:33,755 --> 02:53:35,123 AND I DON'T -- ONE THING WE 4204 02:53:35,123 --> 02:53:37,359 TALKED ABOUT, I DON'T KNOW THAT 4205 02:53:37,359 --> 02:53:39,461 KEY CAME TO CONCLUSION ABOUTS 4206 02:53:39,461 --> 02:53:44,799 THERE A WAY TO FACILITATE A 4207 02:53:44,799 --> 02:53:48,236 DIASPORA OF REHABILITATION 4208 02:53:48,236 --> 02:53:50,538 RESEARCH AWAY FROM CENTERS AND 4209 02:53:50,538 --> 02:53:57,645 MORE BROADLY ACROSS INSTITUTIONS 4210 02:53:57,645 --> 02:53:59,147 IN THE U.S. 4211 02:53:59,147 --> 02:54:00,615 >> MY COMMENT WAS SIMILAR TO 4212 02:54:00,615 --> 02:54:02,016 WHAT BOB WAS SAYING. 4213 02:54:02,016 --> 02:54:07,055 THANKS, MICHELLE, FOR THAT GOOD 4214 02:54:07,055 --> 02:54:07,489 PRESENTATION. 4215 02:54:07,489 --> 02:54:09,791 I WAS READING -- THIS IS AN 4216 02:54:09,791 --> 02:54:12,093 UNPUBLISHED PRE-PRINT BUT THERE 4217 02:54:12,093 --> 02:54:14,162 WAS A PRE-PRINT TALKING ABOUT 4218 02:54:14,162 --> 02:54:18,633 THE TRACK RECORD OF K99 AND R00 4219 02:54:18,633 --> 02:54:20,835 FUNDING FROM NIH, IT DID RAISE 4220 02:54:20,835 --> 02:54:22,170 THE QUESTION THAT HAS ALWAYS 4221 02:54:22,170 --> 02:54:24,239 COME UP IN DISCUSSIONS WITH 4222 02:54:24,239 --> 02:54:26,741 COLLEAGUES WHEN IT COMES TO 4223 02:54:26,741 --> 02:54:29,577 DIVERSIFYING SCIENCE, AND WAS 4224 02:54:29,577 --> 02:54:30,145 MAKING -- EXPRESSING CONCERN 4225 02:54:30,145 --> 02:54:33,515 ABOUT I GUESS, YOU KNOW, WHO IS 4226 02:54:33,515 --> 02:54:37,886 GETTING K99s AND WHO IS NOT, 4227 02:54:37,886 --> 02:54:39,854 MORE IMPORTANTLY, NOT GETTING 4228 02:54:39,854 --> 02:54:40,655 K99s, INSTITUTIONAL GAPS, 4229 02:54:40,655 --> 02:54:42,824 THERE AND I'VE BEEN CURIOUS FROM 4230 02:54:42,824 --> 02:54:45,994 THE POINT OF VIEW OF DIVERSITY 4231 02:54:45,994 --> 02:54:47,762 AND DIVERSIFYING THE SCIENTIFIC 4232 02:54:47,762 --> 02:54:48,897 WORKFORCE AND OUTCOMES OF 4233 02:54:48,897 --> 02:54:50,365 PRINCIPAL INVESTIGATORS FOR A 4234 02:54:50,365 --> 02:54:51,132 LONG TIME. 4235 02:54:51,132 --> 02:54:53,334 AND SEEING THAT WAS CONCERNING. 4236 02:54:53,334 --> 02:54:58,072 I KNOW THERE ARE FOCUSED 4237 02:54:58,072 --> 02:55:01,242 ANNOUNCEMENTS FOR K99s FOR 4238 02:55:01,242 --> 02:55:03,077 PEOPLE FROM VARIOUS POPULATIONS 4239 02:55:03,077 --> 02:55:05,079 BUT ALSO THINKING ABOUT WAYS IN 4240 02:55:05,079 --> 02:55:07,048 WHICH WE CAN LEVERAGE THAT 4241 02:55:07,048 --> 02:55:08,016 MECHANISM TO SUPPORT STUDENTS 4242 02:55:08,016 --> 02:55:11,186 THAT AREN'T FROM ONE OF THE TOP, 4243 02:55:11,186 --> 02:55:13,054 YOU KNOW, 15, 20, 25 4244 02:55:13,054 --> 02:55:14,355 INSTITUTIONS IN THE COUNTRY, BUT 4245 02:55:14,355 --> 02:55:17,859 ARE ALSO COMING FROM SMALLER 4246 02:55:17,859 --> 02:55:18,626 UNIVERSITIES, HBCUs, THINGS 4247 02:55:18,626 --> 02:55:21,029 LIKE THAT, TO HELP BROADEN AND 4248 02:55:21,029 --> 02:55:22,230 DIVERSIFY THE PORTFOLIO. 4249 02:55:22,230 --> 02:55:24,232 I DON'T KNOW HOW MUCH YOU DUG 4250 02:55:24,232 --> 02:55:25,533 INTO THAT WITH WHAT YOU WERE 4251 02:55:25,533 --> 02:55:27,836 LOOKING AT BUT IT STRIKES ME AS 4252 02:55:27,836 --> 02:55:31,773 POTENTIAL WAY TO MERGE A COUPLE 4253 02:55:31,773 --> 02:55:37,445 DIFFERENT OF YOUR AREAS INTO ONE 4254 02:55:37,445 --> 02:55:38,012 THEME. 4255 02:55:38,012 --> 02:55:38,346 >> RALPH? 4256 02:55:38,346 --> 02:55:39,881 >> YEAH, I TOTALLY AGREE. 4257 02:55:39,881 --> 02:55:43,051 AND WE'RE ALWAYS TRYING TO 4258 02:55:43,051 --> 02:55:45,887 PROMOTE A BROADER NET. 4259 02:55:45,887 --> 02:55:48,490 EVEN THE K12 PROGRAMS, UNLIKE 4260 02:55:48,490 --> 02:55:50,692 SOME AT BROADER NIH, THEY ARE 4261 02:55:50,692 --> 02:55:51,559 NOT JUST INSTITUTIONALLY FOCUSED 4262 02:55:51,559 --> 02:55:53,628 BUT TRY TO CONNECT TO OTHER 4263 02:55:53,628 --> 02:55:55,497 INSTITUTIONS AS WELL. 4264 02:55:55,497 --> 02:55:58,233 AND ONE PROBLEM WITH SUPPORTING 4265 02:55:58,233 --> 02:55:59,834 MENTORS AND INDIVIDUAL AWARDS IS 4266 02:55:59,834 --> 02:56:01,536 THAT THE NIH PEER REVIEWERRERS 4267 02:56:01,536 --> 02:56:03,938 LIKE TO SEE THE PRIMARY MENTOR 4268 02:56:03,938 --> 02:56:06,674 BEING SOMEBODY NOT JUST THAT HAS 4269 02:56:06,674 --> 02:56:08,409 THE CONTENT EXPERTISE BUT IS 4270 02:56:08,409 --> 02:56:11,279 ALSO A PLAYER, SOMEBODY THAT HAS 4271 02:56:11,279 --> 02:56:15,650 RESEARCH GRANTS. 4272 02:56:15,650 --> 02:56:17,085 AND THAT STARTS TO SELECT 4273 02:56:17,085 --> 02:56:18,620 AGAINST PEOPLE THAT ARE, YOU 4274 02:56:18,620 --> 02:56:20,688 KNOW, NOT AT THE MOST ELITE 4275 02:56:20,688 --> 02:56:21,789 INSTITUTIONS SO SOMETIMES 4276 02:56:21,789 --> 02:56:24,425 THERE'S A VERY SUPPORTIVE MENTOR 4277 02:56:24,425 --> 02:56:25,426 OR MENTORING ENVIRONMENT, BUT 4278 02:56:25,426 --> 02:56:26,394 THE PERSON JUST DOESN'T HAPPEN 4279 02:56:26,394 --> 02:56:28,796 TO HAVE A GRANT AT THAT TIME. 4280 02:56:28,796 --> 02:56:32,300 AND THEY JUST DON'T SCORE AS 4281 02:56:32,300 --> 02:56:32,634 WELL. 4282 02:56:32,634 --> 02:56:35,703 AND WE HAVE TO FIGHT THAT SORT 4283 02:56:35,703 --> 02:56:38,006 OF ATTITUDE IN ORDER TO HAVE 4284 02:56:38,006 --> 02:56:39,007 BROADER WAYS OF SUPPORTING 4285 02:56:39,007 --> 02:56:40,975 PEOPLE AND AS MICHELLE MENTIONED 4286 02:56:40,975 --> 02:56:44,045 IN THE INTRODUCTION SOME PEOPLE 4287 02:56:44,045 --> 02:56:47,549 WE'RE SUPPORTING ARE NOT GOING 4288 02:56:47,549 --> 02:56:50,285 INTO PURELY ACADEMIC, YOU KNOW, 4289 02:56:50,285 --> 02:56:59,794 R01 CAREER. 4290 02:56:59,794 --> 02:57:03,531 >> WE SPENT, I DON'T KNOW, 8 4291 02:57:03,531 --> 02:57:04,832 HOURS TALKING ABOUT THIS AT THE 4292 02:57:04,832 --> 02:57:05,700 WORKING GROUP. 4293 02:57:05,700 --> 02:57:06,901 WE COULD SPEND ANOTHER 20 HOURS 4294 02:57:06,901 --> 02:57:08,436 TALKING ABOUT THIS. 4295 02:57:08,436 --> 02:57:10,204 I DO RECOGNIZE WE'RE A LITTLE 4296 02:57:10,204 --> 02:57:11,839 BIT OVER TIME. 4297 02:57:11,839 --> 02:57:16,110 SO, WHAT WE HAD WANTED FROM THIS 4298 02:57:16,110 --> 02:57:19,280 GROUP IS A VOTE OF WHETHER YOU 4299 02:57:19,280 --> 02:57:22,884 ENDORSE THOSE RECOMMENDATIONS OR 4300 02:57:22,884 --> 02:57:26,287 WHETHER YOU HAD MAJOR CONCERNS 4301 02:57:26,287 --> 02:57:28,089 WITH THOSE RECOMMENDATIONS. 4302 02:57:28,089 --> 02:57:29,757 AND THIS IS BE CAREFUL WHAT YOU 4303 02:57:29,757 --> 02:57:31,359 WISH FOR, ASKED FOR 4304 02:57:31,359 --> 02:57:33,161 RECOMMENDATIONS SO I GET THEM. 4305 02:57:33,161 --> 02:57:43,705 SO IF WE COULD MAYBE MOVE TO -- 4306 02:57:48,242 --> 02:57:48,376 YEAH. 4307 02:57:48,376 --> 02:57:51,379 >> CAN WE ENDORSE MINOR 4308 02:57:51,379 --> 02:57:51,646 REVISIONS? 4309 02:57:51,646 --> 02:57:55,617 WHAT'S SAID IS REALLY IMPORTANT 4310 02:57:55,617 --> 02:57:56,918 TO CONSIDER, RIGHT? 4311 02:57:56,918 --> 02:58:00,655 BUT ALSO I THINK GOING BACK TO 4312 02:58:00,655 --> 02:58:02,624 WHY PEOPLE ARE NOT APPLYING 4313 02:58:02,624 --> 02:58:03,625 BECAUSE THERE'S NO SUPPORT, I 4314 02:58:03,625 --> 02:58:04,692 THINK THAT'S ALSO IMPORTANT. 4315 02:58:04,692 --> 02:58:07,528 I WAS GOING TO MENTION THAT WHEN 4316 02:58:07,528 --> 02:58:10,531 I HAD MY FIRST K99 I HAD TO 4317 02:58:10,531 --> 02:58:12,367 LEARN AND GET EVERYTHING. 4318 02:58:12,367 --> 02:58:14,435 WE DID IT, TWICE, IT TOOK A LOT 4319 02:58:14,435 --> 02:58:15,637 OF TIME FOR ME. 4320 02:58:15,637 --> 02:58:18,373 AND I DIDN'T HAVE MENTORING SO I 4321 02:58:18,373 --> 02:58:20,141 HAD TO LEARN MYSELF. 4322 02:58:20,141 --> 02:58:21,876 YOU CAN IMAGINE I THINK YOU NEED 4323 02:58:21,876 --> 02:58:23,544 TO DO SOMETHING ON THAT. 4324 02:58:23,544 --> 02:58:25,947 IT'S NOT ONLY THE STUDENTS, THE 4325 02:58:25,947 --> 02:58:27,148 MENTORS, AND THE ENVIRONMENT, 4326 02:58:27,148 --> 02:58:29,384 RIGHT? 4327 02:58:29,384 --> 02:58:32,954 SO MAYBE WITH THE NEW CRITERIA, 4328 02:58:32,954 --> 02:58:35,490 MAYBE THAT WOULD BE LESS, YOU 4329 02:58:35,490 --> 02:58:37,425 KNOW, OF AN IMPACT. 4330 02:58:37,425 --> 02:58:41,029 SO BUT I THINK THESE ARE VERY 4331 02:58:41,029 --> 02:58:41,863 GLOBAL CHANGES, SO -- 4332 02:58:41,863 --> 02:58:43,898 >> SO IS THERE A MOTION TO 4333 02:58:43,898 --> 02:58:49,470 ACCEPT THE RECOMMENDATIONS? 4334 02:58:49,470 --> 02:58:57,812 >> SOUNDS LIKE A MOTION TO 4335 02:58:57,812 --> 02:59:04,085 ACCEPT WITH SOME CHANGES. 4336 02:59:04,085 --> 02:59:04,218 >> 4337 02:59:04,218 --> 02:59:04,519 [CROSSTALK] 4338 02:59:04,519 --> 02:59:05,553 >> WE SHOULD ARTICULATE. 4339 02:59:05,553 --> 02:59:08,189 THE PART YOU WANT TO REVISIT THE 4340 02:59:08,189 --> 02:59:09,157 RECOMMENDATION IS THE 4341 02:59:09,157 --> 02:59:10,858 RECOMMENDATION IN TERMS ABOUT 4342 02:59:10,858 --> 02:59:13,227 THE NO GREATER THAN 10%? 4343 02:59:13,227 --> 02:59:13,895 >> YEAH. 4344 02:59:13,895 --> 02:59:18,166 >> IN TERMS OF -- AND THEN THE 4345 02:59:18,166 --> 02:59:19,133 SECOND RECOMMENDATION THAT YOU 4346 02:59:19,133 --> 02:59:23,404 WANT TO REVISIT NOT JUST SAY WE 4347 02:59:23,404 --> 02:59:25,540 WOULD INCREASE THE AMOUNT OF 4348 02:59:25,540 --> 02:59:27,775 PEOPLE THAT WE WANT TO GET THE 4349 02:59:27,775 --> 02:59:31,279 WORD OUT TO BUT MAYBE BEING MORE 4350 02:59:31,279 --> 02:59:33,448 SPECIFIC ABOUT LIKE WHAT LEWIS 4351 02:59:33,448 --> 02:59:37,185 AND ROBERT SAID IN TERMS OF HOW 4352 02:59:37,185 --> 02:59:40,688 DO WE DIVERSIFY WHO IS GETTING 4353 02:59:40,688 --> 02:59:43,524 Ks AND HOW DO WE SUPPORT A 4354 02:59:43,524 --> 02:59:45,293 DIVERSE TYPE OF UNIVERSITY, YOU 4355 02:59:45,293 --> 02:59:47,161 KNOW, FOLKS, BEING ABLE TO GET 4356 02:59:47,161 --> 02:59:48,696 THE Ks AND DIVERSE TYPE OF 4357 02:59:48,696 --> 02:59:52,100 MENTORS BEING ABLE TO GET THE 4358 02:59:52,100 --> 02:59:52,433 Ks. 4359 02:59:52,433 --> 02:59:54,302 SO, THAT THEN SAYS I THINK THAT 4360 02:59:54,302 --> 02:59:56,671 WOULD BE RECOMMENDATION -- THE 4361 02:59:56,671 --> 02:59:58,539 LAST RECOMMENDATION WE WANT TO 4362 02:59:58,539 --> 03:00:03,478 EDIT THAT ONE, RECOMMENDATION 4363 03:00:03,478 --> 03:00:03,945 NUMBER 6. 4364 03:00:03,945 --> 03:00:09,484 >> JUST A QUICK RESPONSE TO MY 4365 03:00:09,484 --> 03:00:09,717 COMMENT. 4366 03:00:09,717 --> 03:00:10,585 RICK SEGAL WROTE ME. 4367 03:00:10,585 --> 03:00:12,186 WE KNOW THIS IS TRUE, THE 4368 03:00:12,186 --> 03:00:13,888 CENTERS FUND A LOT OF PEOPLE WHO 4369 03:00:13,888 --> 03:00:16,624 AREN'T IN THE CENTERS AROUND THE 4370 03:00:16,624 --> 03:00:18,559 COUNTRY SO, YOU KNOW, I DIDN'T 4371 03:00:18,559 --> 03:00:21,429 MEAN TO SOUND AS EXTREME AS IT 4372 03:00:21,429 --> 03:00:22,029 SOUNDED. 4373 03:00:22,029 --> 03:00:23,397 AND I THINK THAT, YOU KNOW, 4374 03:00:23,397 --> 03:00:28,636 SOMETHING AS SIMPLE AS JUST 4375 03:00:28,636 --> 03:00:30,938 CONTINUING TO ENCOURAGE THAT 4376 03:00:30,938 --> 03:00:32,373 DIVERSIFICATION THROUGH THAT 4377 03:00:32,373 --> 03:00:35,309 MECHANISM IS GREAT. 4378 03:00:35,309 --> 03:00:38,913 >> I THINK WE'RE ALSO LOOKING AT 4379 03:00:38,913 --> 03:00:40,581 NOT JUST THE RECOMMENDATIONS BUT 4380 03:00:40,581 --> 03:00:44,118 FOLLOWING ON THAT THE 4381 03:00:44,118 --> 03:00:44,685 IMPLEMENTATION OF -- 4382 03:00:44,685 --> 03:00:45,520 >> YEAH, THINK SO. 4383 03:00:45,520 --> 03:00:48,589 SO WE AGREE WITH NUMBER 6 BUT WE 4384 03:00:48,589 --> 03:00:50,992 WANT TO CLARIFY HOW MAYBE SOME 4385 03:00:50,992 --> 03:00:52,860 OF THE IMPLEMENTATION AND WE'RE 4386 03:00:52,860 --> 03:00:54,328 AGREEING THAT WE STILL WANT TO 4387 03:00:54,328 --> 03:00:56,030 FUND BUT I THINK I'M HEARING 4388 03:00:56,030 --> 03:00:59,100 THAT PEOPLE DON'T WANT TO 4389 03:00:59,100 --> 03:01:01,869 NECESSARILY PUT THE 10% CEILING 4390 03:01:01,869 --> 03:01:04,372 ON IT. 4391 03:01:04,372 --> 03:01:14,415 4392 03:01:16,484 --> 03:01:16,851 >> (INAUDIBLE). 4393 03:01:16,851 --> 03:01:21,789 >> I DON'T THINK WE NEED TO SET 4394 03:01:21,789 --> 03:01:22,190 SPECIFIC NUMBERS. 4395 03:01:22,190 --> 03:01:24,225 I THINK THIS IS A 4396 03:01:24,225 --> 03:01:28,462 RECOMMENDATION, SO A 4397 03:01:28,462 --> 03:01:29,897 RECOMMENDATION COMES WITHOUT ANY 4398 03:01:29,897 --> 03:01:32,533 HARD BOUNDARIES SO MAYBE JUST 4399 03:01:32,533 --> 03:01:34,635 LEAVING IT AT THIS COULD BE GOOD 4400 03:01:34,635 --> 03:01:37,004 ENOUGH. 4401 03:01:37,004 --> 03:01:41,042 4402 03:01:41,042 --> 03:01:44,545 >> SO IT'S VERY HARD TO BE BOTH 4403 03:01:44,545 --> 03:01:45,746 INVESTIGATOR INITIATED AND TO 4404 03:01:45,746 --> 03:01:48,482 SET GOALS FOR CERTAIN FUNDING. 4405 03:01:48,482 --> 03:01:54,388 SO, WE HAD PUT A RANGE TO 4406 03:01:54,388 --> 03:01:55,823 REFLECT THAT IN SOME YEARS I'M 4407 03:01:55,823 --> 03:01:57,892 GOING TO GET MORE APPLICATIONS, 4408 03:01:57,892 --> 03:02:03,698 IN SOME YEARS FEWER 4409 03:02:03,698 --> 03:02:04,966 APPLICATIONS, BUT THE EMPHASIS 4410 03:02:04,966 --> 03:02:06,868 FROM YOU ALL WE CAN'T JUST LET 4411 03:02:06,868 --> 03:02:08,302 THIS GO TO THE AVERAGE, THAT WE 4412 03:02:08,302 --> 03:02:10,805 STILL NEED TO BE OUT IN FRONT 4413 03:02:10,805 --> 03:02:11,639 AND PUSHING IT. 4414 03:02:11,639 --> 03:02:13,207 AND THAT'S GOING TO TAKE A 4415 03:02:13,207 --> 03:02:16,611 LITTLE BIT OF PRO-ACTIVE WORK ON 4416 03:02:16,611 --> 03:02:17,278 OUR PARTS. 4417 03:02:17,278 --> 03:02:20,548 SO WE HAVE NOT TALKED ABOUT 4418 03:02:20,548 --> 03:02:21,649 IMPLEMENTATION SO THAT'S KIND OF 4419 03:02:21,649 --> 03:02:23,351 GOING TO BE OUR HARD WORK TO 4420 03:02:23,351 --> 03:02:25,253 FIGURE OUT HOW TO DO THIS BUT 4421 03:02:25,253 --> 03:02:28,089 JUST THE RECOMMENDATION WE 4422 03:02:28,089 --> 03:02:30,558 SHOULDN'T LET IT GO AVERAGE, ONE 4423 03:02:30,558 --> 03:02:31,626 YEAR 9%, ONE YEAR 11%, YOU'RE 4424 03:02:31,626 --> 03:02:34,795 NOT GOING TO BE MAD AT ME, 4425 03:02:34,795 --> 03:02:35,229 RIGHT? 4426 03:02:35,229 --> 03:02:36,430 BUT WE'RE -- KNOWING WE CAN'T 4427 03:02:36,430 --> 03:02:40,167 JUST SIT BY AND LET IT GO -- 4428 03:02:40,167 --> 03:02:41,903 PROCEED TO THE MEAN. 4429 03:02:41,903 --> 03:02:43,838 AND THEN, YOU KNOW, WE HAVE THIS 4430 03:02:43,838 --> 03:02:46,474 WONDERFUL NEW DIRECTOR OF THE 4431 03:02:46,474 --> 03:02:48,142 OFFICE OF HEALTH EQUITY, SO IT'S 4432 03:02:48,142 --> 03:02:49,243 IN THE RECOMMENDATIONS BUT WE 4433 03:02:49,243 --> 03:02:51,078 DIDN'T TALK ABOUT WHO SHE IS AND 4434 03:02:51,078 --> 03:02:54,148 WHAT HER GROUP IS DOING AND HOW 4435 03:02:54,148 --> 03:02:55,283 THEY ARE INTERACTING WITH US, 4436 03:02:55,283 --> 03:02:58,519 THAT COULD BE SOMETHING WE DO AT 4437 03:02:58,519 --> 03:03:05,526 THE NEXT MEETING TO SHOW HOW I'M 4438 03:03:05,526 --> 03:03:06,394 ENVISIONING TO IMPLEMENT AND 4439 03:03:06,394 --> 03:03:08,596 WHO I'LL NEED HELP FROM 4440 03:03:08,596 --> 03:03:08,863 BASICALLY. 4441 03:03:08,863 --> 03:03:10,865 DOES THAT SOUND GOOD? 4442 03:03:10,865 --> 03:03:13,000 >> YEAH, THEN YOU'RE SAYING 4443 03:03:13,000 --> 03:03:14,402 WE'LL LOOSEN THE NUMBERS ON 4444 03:03:14,402 --> 03:03:16,837 NUMBER 1 BUT THAT THE REST OF IT 4445 03:03:16,837 --> 03:03:19,140 CAN KIND OF BE AS IS, THAT WE 4446 03:03:19,140 --> 03:03:28,115 COULD VOTE ON AS IS, SO BARBARA? 4447 03:03:28,115 --> 03:03:30,751 >> CALL THE QUESTION. 4448 03:03:30,751 --> 03:03:34,255 ALL IN FAVOR? 4449 03:03:34,255 --> 03:03:37,959 OPPOSED? 4450 03:03:37,959 --> 03:03:40,494 THANK YOU. 4451 03:03:40,494 --> 03:03:40,995 THANK YOU ALL. 4452 03:03:40,995 --> 03:03:44,298 >> OKAY. 4453 03:03:44,298 --> 03:03:45,967 >> THANK YOU TO ALL THE 4454 03:03:45,967 --> 03:03:46,233 COMMITTEE. 4455 03:03:46,233 --> 03:03:47,702 A GREAT DISCUSSION OVER THE LAST 4456 03:03:47,702 --> 03:03:48,803 FEW MONTHS. 4457 03:03:48,803 --> 03:03:50,771 WE REALLY APPRECIATED YOUR 4458 03:03:50,771 --> 03:03:55,076 INPUT. 4459 03:03:55,076 --> 03:03:56,310 WE'VE REACHED THE LUNCH BREAK. 4460 03:03:56,310 --> 03:03:59,780 THE BREAK FOR LUNCH. 4461 03:03:59,780 --> 03:04:01,882 WE'LL RECONVENE AT 1:30, SO YOU 4462 03:04:01,882 --> 03:04:04,485 FOLKS AT HOME, GO AHEAD AND RAID 4463 03:04:04,485 --> 03:04:07,788 YOUR REFRIGERATORS. 4464 03:04:07,788 --> 03:04:09,724 WE'LL SEE YOU AGAIN IN A LITTLE 4465 03:04:09,724 --> 03:04:12,087 MORE THAN AN HOUR. THANK YOU. 4466 03:04:12,087 --> 03:04:17,693 WE'LL START THE AFTERNOON WITH A 4467 03:04:17,693 --> 03:04:23,265 PRESENTATION BY DR. SALZER, 4468 03:04:23,265 --> 03:04:24,700 ASSOCIATE PROFESSOR, DEPARTMENT 4469 03:04:24,700 --> 03:04:27,102 OF PHYSICAL MEDICINE AND 4470 03:04:27,102 --> 03:04:28,336 REHABILITATION, CASE WESTERN. 4471 03:04:28,336 --> 03:04:32,107 HE GOT HIS Ph.D. IN MECHANICAL 4472 03:04:32,107 --> 03:04:34,276 ENGINEERING AT NORTHWESTERN, AND 4473 03:04:34,276 --> 03:04:40,248 REHABILITATION INSTITUTE OF 4474 03:04:40,248 --> 03:04:41,850 CHICAGO. 4475 03:04:41,850 --> 03:04:43,385 IN 2009, INVESTIGATING 4476 03:04:43,385 --> 03:04:44,252 EXOSKELETAL ASSISTANCE FOR 4477 03:04:44,252 --> 03:04:45,020 PEOPLE FOLLOWING STROKE. 4478 03:04:45,020 --> 03:04:47,355 THE RESEARCH IN HIS LAB IS 4479 03:04:47,355 --> 03:04:49,725 MOTIVATED BY LARGE GAPS IN 4480 03:04:49,725 --> 03:04:51,593 KNOWLEDGE PREVENTING FULL 4481 03:04:51,593 --> 03:04:53,328 RECOVERY OF PATIENTS FOLLOWING 4482 03:04:53,328 --> 03:04:53,562 STROKE. 4483 03:04:53,562 --> 03:04:55,630 TODAY, HE'S GOING TO BE SPEAKING 4484 03:04:55,630 --> 03:04:57,866 ABOUT A MORE PERSONAL ROLE, THAT 4485 03:04:57,866 --> 03:05:02,370 IS AS A FATHER TO A DAUGHTER 4486 03:05:02,370 --> 03:05:03,071 WITH TBI. 4487 03:05:03,071 --> 03:05:06,141 THANK YOU SO MUCH, DR. SULZER. 4488 03:05:06,141 --> 03:05:07,809 >> THANK YOU VERY MUCH. 4489 03:05:07,809 --> 03:05:09,978 THANKS FOR THE INTRODUCTION. 4490 03:05:09,978 --> 03:05:12,748 AND THANKS TO ALFRED FOR 4491 03:05:12,748 --> 03:05:15,917 INVITING ME TO THIS. 4492 03:05:15,917 --> 03:05:22,591 I'LL SHARE MY SCREEN. 4493 03:05:22,591 --> 03:05:27,262 ARE WE OKAY? 4494 03:05:27,262 --> 03:05:27,462 OKAY. 4495 03:05:27,462 --> 03:05:27,696 >> YES. 4496 03:05:27,696 --> 03:05:28,597 >> GOOD, THANK YOU. 4497 03:05:28,597 --> 03:05:31,800 I'M GOING TO BE TALKING ABOUT 4498 03:05:31,800 --> 03:05:33,735 INCORPORATING THE EXPERTISE OF 4499 03:05:33,735 --> 03:05:34,970 LIVED EXPERIENCE IN REHAB 4500 03:05:34,970 --> 03:05:35,837 RESEARCH, THE MAIN THESIS OF THE 4501 03:05:35,837 --> 03:05:40,542 TALK AND I HOPE I GET THAT POINT 4502 03:05:40,542 --> 03:05:41,409 ACROSS TODAY. 4503 03:05:41,409 --> 03:05:43,378 THE MAIN POINTS I WANT TO GO 4504 03:05:43,378 --> 03:05:47,015 OVER WHAT MAKES COMPLEX CARE SO 4505 03:05:47,015 --> 03:05:47,983 OVERWHELMING FROM THE PERSONAL 4506 03:05:47,983 --> 03:05:48,283 EXPERIENCE. 4507 03:05:48,283 --> 03:05:50,585 I WANT TO DRIVE HOME THE POINT 4508 03:05:50,585 --> 03:05:52,788 THAT LIVED EXPERIENCE SHOULD BE 4509 03:05:52,788 --> 03:05:54,322 CONSIDERED A CREDENTIAL OR 4510 03:05:54,322 --> 03:05:54,990 QUALIFICATION OR EXPERTISE, 4511 03:05:54,990 --> 03:05:57,859 WHATEVER YOU WANT TO CALL IT, 4512 03:05:57,859 --> 03:05:59,728 BUT I THINK THE TALK WOULD BE 4513 03:05:59,728 --> 03:06:02,764 SUCCESSFUL IF WE COME AWAY WITH 4514 03:06:02,764 --> 03:06:05,000 THAT ONE POINT. 4515 03:06:05,000 --> 03:06:07,169 AND THEN FINALLY FINISHING UP 4516 03:06:07,169 --> 03:06:09,471 WITH POTENTIAL ACTION ITEMS I 4517 03:06:09,471 --> 03:06:11,773 SEE FOR NIH AND NCMRR. 4518 03:06:11,773 --> 03:06:13,842 RALPH ASKED ME TO BE 4519 03:06:13,842 --> 03:06:14,276 PROVOCATIVE. 4520 03:06:14,276 --> 03:06:16,912 I HOPE I ACHIEVE THAT TODAY. 4521 03:06:16,912 --> 03:06:19,548 SOME BACKGROUND AS WAS 4522 03:06:19,548 --> 03:06:23,351 MENTIONED, Ph.D. AT RIC AND 4523 03:06:23,351 --> 03:06:23,852 NORTHWESTERN, DEVELOPING 4524 03:06:23,852 --> 03:06:25,554 EXOSKELETON TO HELP PEOPLE AFTER 4525 03:06:25,554 --> 03:06:27,856 STROKE WITH STIFF KNEE GAIT, 4526 03:06:27,856 --> 03:06:29,157 HELP THEM WALK BETTER. 4527 03:06:29,157 --> 03:06:33,528 I THEN DID A BIT OF A 180 FROM 4528 03:06:33,528 --> 03:06:40,202 MY POSTDOC DOCK IN SWITZERLAND, 4529 03:06:40,202 --> 03:06:42,103 fMRI BASED NEURONEEDBACK, 4530 03:06:42,103 --> 03:06:43,171 DOPAMINERGIC MID-BRAIN, AS MY 4531 03:06:43,171 --> 03:06:44,673 FACULTY POSITION WHEN I MOVED TO 4532 03:06:44,673 --> 03:06:49,811 UNIVERSITY OF TEXAS AS AT AUSTIN 4533 03:06:49,811 --> 03:06:51,146 IN MECHANICAL ENGINEERING, WHERE 4534 03:06:51,146 --> 03:06:52,480 I CONTINUE DOING THIS. 4535 03:06:52,480 --> 03:06:55,617 I SHOULD HAVE MENTIONED I MET MY 4536 03:06:55,617 --> 03:06:57,586 WIFE AT NORTHWESTERN, A Ph.D. 4537 03:06:57,586 --> 03:07:00,655 IN CHEMICAL AND BIOLOGICAL 4538 03:07:00,655 --> 03:07:02,190 ENGINEERING, LINDSAY, AND SHE -- 4539 03:07:02,190 --> 03:07:03,925 WHEN WE MOVED TO AUSTIN SHE 4540 03:07:03,925 --> 03:07:05,927 STARTED HER JOB AT A BIOTECH 4541 03:07:05,927 --> 03:07:07,329 START-UP IN TISSUE ENGINEERING. 4542 03:07:07,329 --> 03:07:09,331 WE HAD A BROAD BASE OF KNOWLEDGE 4543 03:07:09,331 --> 03:07:10,832 BETWEEN BOTH OF US. 4544 03:07:10,832 --> 03:07:12,801 WE HAD THREE CHILDREN IN AUSTIN. 4545 03:07:12,801 --> 03:07:14,903 THIS IS THE BEST PICTURE WE EVER 4546 03:07:14,903 --> 03:07:16,638 TOOK OF THEM, EARLY IN THE 4547 03:07:16,638 --> 03:07:17,205 PANDEMIC. 4548 03:07:17,205 --> 03:07:27,682 THIS IS N IN OUR BACK YARD. 4549 03:07:28,516 --> 03:07:29,985 IN MAY OF 2020 LINDSAY WAS ON 4550 03:07:29,985 --> 03:07:31,720 HER WAY TO WORK FOR THE FIRST 4551 03:07:31,720 --> 03:07:33,121 TIME SINCE THE PANDEMIC STARTED, 4552 03:07:33,121 --> 03:07:34,256 SHE WAS ON THE ROAD. 4553 03:07:34,256 --> 03:07:36,424 I WAS IN THE OFFICE GRADING 4554 03:07:36,424 --> 03:07:37,525 FINAL EXAMS. 4555 03:07:37,525 --> 03:07:40,262 AND WE JUST HIRED A NANNY THE 4556 03:07:40,262 --> 03:07:41,129 WEEK BEFORE. 4557 03:07:41,129 --> 03:07:43,198 AND I -- THE KIDS WERE OUTSIDE. 4558 03:07:43,198 --> 03:07:45,100 I HEARD SCREAMING FROM THE 4559 03:07:45,100 --> 03:07:47,502 NANNY, I KNEW RIGHT AWAY IT WAS 4560 03:07:47,502 --> 03:07:49,905 LIBBY BECAUSE SHE CAUSES BY FAR 4561 03:07:49,905 --> 03:07:50,405 THE MOST TROUBLE. 4562 03:07:50,405 --> 03:07:52,107 FOR EXAMPLE THREE IN THE MORNING 4563 03:07:52,107 --> 03:07:55,477 WHEN SHE CLIMBS A COUNTER TO GET 4564 03:07:55,477 --> 03:07:58,346 THE SUGARY STUFF, FIVE A.M. I 4565 03:07:58,346 --> 03:08:00,982 RATHER RUSTLING, FIND HER WITH 4566 03:08:00,982 --> 03:08:02,450 YOGURT AND SUGAR EVERYWHERE OR 4567 03:08:02,450 --> 03:08:04,352 PUTS HER HAND IN FRONT OF HER 4568 03:08:04,352 --> 03:08:08,423 EYES AND THINKS SHE IS INVISIBLE 4569 03:08:08,423 --> 03:08:10,058 AND WALKS DOWN THE STREET. 4570 03:08:10,058 --> 03:08:11,593 BUT THE SCREAMING CONTINUED, I 4571 03:08:11,593 --> 03:08:13,461 WENT TO THE BATHROOM TO LOOK 4572 03:08:13,461 --> 03:08:14,562 OUTSIDE AND LIBBY WAS SPLAYED ON 4573 03:08:14,562 --> 03:08:18,934 THE GROUND WITH THE NANNY OVER 4574 03:08:18,934 --> 03:08:19,301 HER. 4575 03:08:19,301 --> 03:08:22,203 SO, MY STOMACH DROPPED, I RAN 4576 03:08:22,203 --> 03:08:24,306 OUTSIDE TO SEE WHAT WAS WRONG, 4577 03:08:24,306 --> 03:08:26,641 AND A TREE BRANCH FELL ON HER 4578 03:08:26,641 --> 03:08:30,111 HEAD FROM ABOUT 30 FEET UP. 4579 03:08:30,111 --> 03:08:32,380 I CALLED 911, THE AMBULANCE CAME 4580 03:08:32,380 --> 03:08:32,981 PRETTY QUICKLY. 4581 03:08:32,981 --> 03:08:34,549 I FOUND WHEN I WAS ON THE RIDE 4582 03:08:34,549 --> 03:08:38,620 TO THE HOSPITAL SHE HAD A BLOWN 4583 03:08:38,620 --> 03:08:39,387 RIGHT PUPIL. 4584 03:08:39,387 --> 03:08:42,791 APPARENTLY MEANT THERE WAS 4585 03:08:42,791 --> 03:08:44,225 PRESSURE ON THE BRAINSTEM, IF 4586 03:08:44,225 --> 03:08:45,860 SHE DIDN'T HAVE SURGE TROY 4587 03:08:45,860 --> 03:08:46,628 RELEASE THE SWELLING SHE 4588 03:08:46,628 --> 03:08:47,495 WOULDN'T MAKE IT. 4589 03:08:47,495 --> 03:08:56,471 SHE HAD A CRANIOCTOMY, A VENT 4590 03:08:56,471 --> 03:09:00,075 INSTALLED, A G-TUBE, A JP DRAIN 4591 03:09:00,075 --> 03:09:01,276 TO DRAIN CEREBROSPINAL FLUID, A 4592 03:09:01,276 --> 03:09:04,713 LOT OF EQUIPMENT ON THIS TINY 4593 03:09:04,713 --> 03:09:06,214 PERSON, THE CRISIS -- SORRY, WAS 4594 03:09:06,214 --> 03:09:07,849 THERE A QUESTION? 4595 03:09:07,849 --> 03:09:12,020 NO, I THOUGHT I HEARD SOMETHING. 4596 03:09:12,020 --> 03:09:12,988 THAT CRISIS, EVERYTHING SEEMED 4597 03:09:12,988 --> 03:09:15,523 TO BE IN AN ALTERNATE REALITY AT 4598 03:09:15,523 --> 03:09:16,725 THIS POINT. 4599 03:09:16,725 --> 03:09:20,362 SHE WAS IN A COMA FOR TWO WEEKS. 4600 03:09:20,362 --> 03:09:22,430 AFTER THE FIRST WEEK WE WERE 4601 03:09:22,430 --> 03:09:23,865 DESPERATE FOR A PROGNOSIS, AFTER 4602 03:09:23,865 --> 03:09:26,134 THE FIRST WEEK GO GOT THAT. 4603 03:09:26,134 --> 03:09:30,772 THE NEUROLOGIST DID A PERFUSION 4604 03:09:30,772 --> 03:09:32,841 MRI, 1.5 T-MAGNET, YOU KNOW 4605 03:09:32,841 --> 03:09:34,142 THAT'S STANDARD FOR CLINICAL 4606 03:09:34,142 --> 03:09:35,677 ENVIRONMENT BUT ALSO PROBABLY 4607 03:09:35,677 --> 03:09:36,644 THE LOWEST RESOLUTION IMAGE 4608 03:09:36,644 --> 03:09:38,179 WE'RE GOING TO GET AND BASED ON 4609 03:09:38,179 --> 03:09:40,682 THAT WITH HER STILL IN A COMA 4610 03:09:40,682 --> 03:09:43,018 THE PROGNOSIS WAS SHE WOULD HAVE 4611 03:09:43,018 --> 03:09:43,885 DIFFICULTY CONCENTRATING ON MATH 4612 03:09:43,885 --> 03:09:47,422 PROBLEMS AND WALK WITH A LIMP. 4613 03:09:47,422 --> 03:09:49,557 WHEN I HEARD THAT, I WAS 4614 03:09:49,557 --> 03:09:50,558 DEVASTATED, BOTH OF US, THAT 4615 03:09:50,558 --> 03:09:52,093 THERE WOULD BE ANY PERMANENT 4616 03:09:52,093 --> 03:09:54,696 INJURY TO THIS, OUR PERFECT 4617 03:09:54,696 --> 03:09:55,163 LITTLE GIRL. 4618 03:09:55,163 --> 03:09:59,100 BUT I ALSO THOUGHT IT WAS ODDLY 4619 03:09:59,100 --> 03:09:59,467 SPECIFIC. 4620 03:09:59,467 --> 03:10:01,403 IT WASN'T UNTIL LATER EVENTUALLY 4621 03:10:01,403 --> 03:10:03,571 THAT I REALIZED THAT PREDICTION 4622 03:10:03,571 --> 03:10:05,106 WAS WILDLY OFF, LIKE THROWING A 4623 03:10:05,106 --> 03:10:07,976 DART AT A DART BOARD. 4624 03:10:07,976 --> 03:10:09,244 THAT COLORED OUR IMPRESSION 4625 03:10:09,244 --> 03:10:09,944 GOING FORWARD. 4626 03:10:09,944 --> 03:10:11,246 IN THE END IT WOULD HAVE BEEN 4627 03:10:11,246 --> 03:10:13,014 BETTER IF THEY JUST SAID WE 4628 03:10:13,014 --> 03:10:15,250 DON'T KNOW, EVEN THOUGH WE WERE 4629 03:10:15,250 --> 03:10:16,418 DESPERATE, IT WOULD HAVE BEEN 4630 03:10:16,418 --> 03:10:18,520 BETTER JUST TO SAY THAT. 4631 03:10:18,520 --> 03:10:20,822 AFTER THOSE TWO WEEKS, IN A 4632 03:10:20,822 --> 03:10:22,457 COMA, SHE STARTED BREATHING ON 4633 03:10:22,457 --> 03:10:25,660 HER OWN AND WE MOVED HER UP TO 4634 03:10:25,660 --> 03:10:27,062 PHYSIATRY. 4635 03:10:27,062 --> 03:10:32,200 WE TOOK HER OFF THE MOST -- THE 4636 03:10:32,200 --> 03:10:33,101 COMA-INDUCING DRUGS. 4637 03:10:33,101 --> 03:10:34,936 SHE WOKE UP, OPENED HER EYES. 4638 03:10:34,936 --> 03:10:36,371 I WAS HOPING TO COMMUNICATE BUT 4639 03:10:36,371 --> 03:10:38,807 INSTEAD SHE WAS IN AN 4640 03:10:38,807 --> 03:10:40,208 UNRESPONSIVE WAKEFULNESS STATE 4641 03:10:40,208 --> 03:10:42,410 THAT LASTED FOR WEEKS, SO MUCH 4642 03:10:42,410 --> 03:10:43,945 SO THAT WE REALIZED THAT SHE 4643 03:10:43,945 --> 03:10:47,782 NEEDED TO GO TO A PLACE THAT HAS 4644 03:10:47,782 --> 03:10:49,751 EXPERIENCE WITH KIDS LIKE HER. 4645 03:10:49,751 --> 03:10:53,121 I TALKED TO COLLEAGUES AND THEY 4646 03:10:53,121 --> 03:10:54,656 SUGGESTED KENNEDY KRIEGER IN 4647 03:10:54,656 --> 03:10:55,423 BALTIMORE. 4648 03:10:55,423 --> 03:10:56,658 WE HAD TO FIGHT, ANOTHER STORY, 4649 03:10:56,658 --> 03:10:58,193 TO GET HER THERE. 4650 03:10:58,193 --> 03:11:00,361 I TOOK THE AIR AMBULANCE WITH 4651 03:11:00,361 --> 03:11:02,230 HER TO KENNEDY KRIEGER, MY WIFE 4652 03:11:02,230 --> 03:11:04,199 AND BOYS WENT TO CLEVELAND TO BE 4653 03:11:04,199 --> 03:11:05,200 WITH EXTENDED FAMILY. 4654 03:11:05,200 --> 03:11:09,871 WE SWITCHED OFF EVERY TWO WEEKS. 4655 03:11:09,871 --> 03:11:14,576 AT KENNEDY KRIEGER SHE BECAME 4656 03:11:14,576 --> 03:11:15,677 CONSCIOUS, STARTED SMILING, AND 4657 03:11:15,677 --> 03:11:17,312 AFTER ABOUT FIVE MONTHS SINCE 4658 03:11:17,312 --> 03:11:21,149 THE ACCIDENT THEY SENT HER HOME 4659 03:11:21,149 --> 03:11:23,118 TO AUSTIN, WE TOOK THE PLANE 4660 03:11:23,118 --> 03:11:23,751 BACK WITH HER. 4661 03:11:23,751 --> 03:11:26,855 THIS WAS I THINK A REALLY -- SHE 4662 03:11:26,855 --> 03:11:29,257 WAS EXCITED TO BE REUNITED WITH 4663 03:11:29,257 --> 03:11:30,458 HER BROTHERS, AFTER FIVE MONTHS, 4664 03:11:30,458 --> 03:11:33,428 BUT THIS IS ALSO A POINT WHERE 4665 03:11:33,428 --> 03:11:35,930 OUR LIVES WERE COMPLETELY 4666 03:11:35,930 --> 03:11:36,798 DIFFERENT AND THERE WAS NO ONE 4667 03:11:36,798 --> 03:11:38,233 TO TRAIN US HOW TO ADAPT TO 4668 03:11:38,233 --> 03:11:40,101 HAVING A KID LIKE THIS. 4669 03:11:40,101 --> 03:11:43,705 IT'S A BIG HOLE IN THE MEDICAL 4670 03:11:43,705 --> 03:11:44,472 SYSTEM. 4671 03:11:44,472 --> 03:11:46,808 WE DID FIND OUT, FINAGLE WAYS OF 4672 03:11:46,808 --> 03:11:48,743 GETTING A LOT OF THERAPY. 4673 03:11:48,743 --> 03:11:52,380 WE GOT INPATIENT -- SORRY, 4674 03:11:52,380 --> 03:11:53,815 OUTPATIENT THERAPY, HOME THERAPY 4675 03:11:53,815 --> 03:11:55,750 SIMULTANEOUSLY, SO ABOUT 20 4676 03:11:55,750 --> 03:11:58,820 HOURS OF THERAPY PER WEEK, WHICH 4677 03:11:58,820 --> 03:11:59,721 WAS REALLY ADVANTAGEOUS, A LOT 4678 03:11:59,721 --> 03:12:01,456 OF PEOPLE WOULDN'T KNOW ABOUT 4679 03:12:01,456 --> 03:12:02,824 THAT POSSIBILITY, WHICH IS 4680 03:12:02,824 --> 03:12:05,160 ANOTHER MAJOR ISSUE I WANTED TO 4681 03:12:05,160 --> 03:12:06,828 MENTION THAT THE AMOUNT OF 4682 03:12:06,828 --> 03:12:08,229 KNOWLEDGE WE HAVE IS DIFFERENT 4683 03:12:08,229 --> 03:12:09,898 THAN THE AMOUNT OF KNOWLEDGE 4684 03:12:09,898 --> 03:12:11,332 ANOTHER FAMILY IN SIMILAR 4685 03:12:11,332 --> 03:12:12,433 SITUATION HAS. 4686 03:12:12,433 --> 03:12:13,835 IN SOME WAYS BETTER, SOME WAYS 4687 03:12:13,835 --> 03:12:15,603 NOT AS GOOD. 4688 03:12:15,603 --> 03:12:18,039 AND THE LACK OF FEELING THAT WE 4689 03:12:18,039 --> 03:12:20,642 KNOW WHAT OTHER PEOPLE KNOW, I 4690 03:12:20,642 --> 03:12:24,913 THINK MAKES THIS PROCESS FEEL 4691 03:12:24,913 --> 03:12:26,114 SO MUCH MORE NEBULOUS. 4692 03:12:26,114 --> 03:12:28,750 I GET AN IDEA OF HER FUNCTION. 4693 03:12:28,750 --> 03:12:31,286 I COULD SHOW MORE BUT I NEED TO 4694 03:12:31,286 --> 03:12:32,153 MOVE THE PRESENTATION ON. 4695 03:12:32,153 --> 03:12:35,190 I WANT TO TALK ABOUT SOME 4696 03:12:35,190 --> 03:12:36,524 CAREGIVER ISSUES. 4697 03:12:36,524 --> 03:12:38,259 THE FIRST THING AND MOST 4698 03:12:38,259 --> 03:12:39,060 STRIKING ARE EMOTIONAL ISSUES 4699 03:12:39,060 --> 03:12:41,529 THAT COME WITH THIS. 4700 03:12:41,529 --> 03:12:43,198 THE MAJOR ONE, THIS IS BEFORE 4701 03:12:43,198 --> 03:12:44,199 THE ACCIDENT OF COURSE, THIS IS 4702 03:12:44,199 --> 03:12:48,770 WHO WE SEE WHEN WE LOOK AT 4703 03:12:48,770 --> 03:12:49,337 LIBBY. 4704 03:12:49,337 --> 03:12:51,539 THIS MAJOR EMOTIONAL ISSUE IS A 4705 03:12:51,539 --> 03:12:52,507 SENSE OF AMBIGUOUS LOSS. 4706 03:12:52,507 --> 03:12:54,142 AFTER THE INJURY SHE MAY LOOK 4707 03:12:54,142 --> 03:12:55,476 SOMEWHAT SIMILAR BUT SHE IS FOR 4708 03:12:55,476 --> 03:12:58,079 ALL INTENTS AND PURPOSES A 4709 03:12:58,079 --> 03:13:02,617 COMPLETELY DIFFERENT PERSON, 4710 03:13:02,617 --> 03:13:04,118 COGNITIVELY IMPAIRED, MOVEMENT 4711 03:13:04,118 --> 03:13:06,120 IMPAIRED, SHE OBVIOUSLY DOESN'T 4712 03:13:06,120 --> 03:13:08,723 REALLY KNOW WHAT HAPPENED. 4713 03:13:08,723 --> 03:13:10,491 THERE'S FEELINGS OF EXCLUSION 4714 03:13:10,491 --> 03:13:11,893 FROM NEUROTYPICAL SOCIETY. 4715 03:13:11,893 --> 03:13:16,064 THERE'S A WHOLE LIST OF THINGS. 4716 03:13:16,064 --> 03:13:17,365 THERE'S ALSO LOGISTICAL ISSUES. 4717 03:13:17,365 --> 03:13:21,202 I DON'T EXPECT YOU TO READ 4718 03:13:21,202 --> 03:13:22,303 THROUGH ALL BUT THESE ISSUES 4719 03:13:22,303 --> 03:13:23,838 WHICH NOW THAT I'M WORKING FULL 4720 03:13:23,838 --> 03:13:27,342 TIME MY WIFE IS THE PRIMARY 4721 03:13:27,342 --> 03:13:30,278 PERSON DOING THIS, ALL OF THESE 4722 03:13:30,278 --> 03:13:32,280 ARE SUBSTANTIAL. 4723 03:13:32,280 --> 03:13:34,782 AND TIME IS A ZERO SUM GAME. 4724 03:13:34,782 --> 03:13:36,651 THE MORE TIME WE SPEND ON THESE, 4725 03:13:36,651 --> 03:13:39,053 THE LEST TIME WE SPEND 4726 03:13:39,053 --> 03:13:40,688 PERSONALLY WITH LIBBY, LEST TIME 4727 03:13:40,688 --> 03:13:43,091 WE SPEND WITH REID AND NOAH, THE 4728 03:13:43,091 --> 03:13:45,793 LEST TIME WE SPEND ON OURSELVES. 4729 03:13:45,793 --> 03:13:47,695 THAT'S NOT SIT ON THE COUCH AND 4730 03:13:47,695 --> 03:13:49,664 ENJOY YOURSELF WHICH IS STILL 4731 03:13:49,664 --> 03:13:51,199 VALUABLE, THAT'S STUFF LIKE GO 4732 03:13:51,199 --> 03:13:53,401 TO THE DOCTOR FOR OURSELVES, 4733 03:13:53,401 --> 03:13:53,768 RIGHT? 4734 03:13:53,768 --> 03:13:55,837 WHICH BRINGS UP THE OTHER TOPIC, 4735 03:13:55,837 --> 03:13:57,572 THE PHYSICAL ISSUES. 4736 03:13:57,572 --> 03:13:59,173 LIBBY HAS DIFFICULTY DOING ALL 4737 03:13:59,173 --> 03:14:00,074 ACTIVITIES OF DAILY LIVING, AND 4738 03:14:00,074 --> 03:14:03,244 SHE NEEDS TO BE ASSISTED WITH 4739 03:14:03,244 --> 03:14:03,478 THESE. 4740 03:14:03,478 --> 03:14:06,214 AFTER A WEEKEND OF SUPPORTING 4741 03:14:06,214 --> 03:14:07,982 HER WHILE WALKING, SHE CAN 4742 03:14:07,982 --> 03:14:10,151 SUPPORT HER OWN WEIGHT BUT NOT 4743 03:14:10,151 --> 03:14:11,452 BALANCE, DOING OTHER ACTIVITIES, 4744 03:14:11,452 --> 03:14:14,956 SITTING WITH HER, YOU FEEL 4745 03:14:14,956 --> 03:14:15,223 EXHAUSTED. 4746 03:14:15,223 --> 03:14:18,793 AND THAT DOES CAUSE EVENTUALLY 4747 03:14:18,793 --> 03:14:19,427 SOME MUSCULOSKELETAL ISSUES. 4748 03:14:19,427 --> 03:14:23,498 I HAVE A BAD BACK, A ROTATOR 4749 03:14:23,498 --> 03:14:25,233 CUFF ISSUE, A HIP ISSUE, I'M 4750 03:14:25,233 --> 03:14:26,768 ONLY GETTING OLDER AND SHE'S 4751 03:14:26,768 --> 03:14:27,635 ONLY GETTING BIGGER. 4752 03:14:27,635 --> 03:14:29,170 I TALK ABOUT THESE NEGATIVE 4753 03:14:29,170 --> 03:14:30,371 THINGS BUT THE POSITIVES, YOU 4754 03:14:30,371 --> 03:14:31,973 SEE THIS GIRL, SHE'S ONE OF THE 4755 03:14:31,973 --> 03:14:33,574 MOST ADORABLE PEOPLE IN THE 4756 03:14:33,574 --> 03:14:33,975 WORLD. 4757 03:14:33,975 --> 03:14:36,611 SHE'S A VERY HAPPY GIRL. 4758 03:14:36,611 --> 03:14:38,579 SHE ALSO HAS NO SENSE OF HER OWN 4759 03:14:38,579 --> 03:14:39,480 SAFETY. 4760 03:14:39,480 --> 03:14:41,249 YOU CAN SEE RIGHT THERE, SO 4761 03:14:41,249 --> 03:14:42,850 EVERYONE WHEN THEY ARE HAVING A 4762 03:14:42,850 --> 03:14:47,989 BAD DAY, FIRST GRADE NOW, THE 4763 03:14:47,989 --> 03:14:50,091 TEACHERS AND STUDENTS GO TO HER 4764 03:14:50,091 --> 03:14:51,492 TO CHEER HER UP. 4765 03:14:51,492 --> 03:14:53,061 EVERYONE THAT KNOWS HER LOVES 4766 03:14:53,061 --> 03:14:54,796 HER BUT IT'S DIFFICULT, IT'S A 4767 03:14:54,796 --> 03:14:55,663 LOT OF WORK. 4768 03:14:55,663 --> 03:14:58,733 SO I WANT TO GO INTO ONE OF THE 4769 03:14:58,733 --> 03:15:00,702 BULLET POINTS DOWN HERE, 4770 03:15:00,702 --> 03:15:01,436 COORDINATING COMMUNICATION, TO 4771 03:15:01,436 --> 03:15:03,671 ILLUSTRATE WHAT MAKES SOME OF 4772 03:15:03,671 --> 03:15:06,207 THESE LOGISTICAL ISSUES SO 4773 03:15:06,207 --> 03:15:06,541 DIFFICULT. 4774 03:15:06,541 --> 03:15:08,409 BEFORE LIBBY'S INJURY WE WOULD 4775 03:15:08,409 --> 03:15:09,944 TALK TO THE PEDIATRICIAN, TO 4776 03:15:09,944 --> 03:15:12,980 INSURANCE, AND THEY WOULD TALK 4777 03:15:12,980 --> 03:15:14,749 TO EACH OTHER. 4778 03:15:14,749 --> 03:15:16,617 AFTER THE INJURY, THERE'S A LOT 4779 03:15:16,617 --> 03:15:17,685 MORE LINES OF COMMUNICATION, A 4780 03:15:17,685 --> 03:15:18,353 LOT MORE COMPLEX. 4781 03:15:18,353 --> 03:15:20,888 EACH ONE OF THESE LINES HAS ITS 4782 03:15:20,888 --> 03:15:22,223 OWN CHANCE OF FAILURE. 4783 03:15:22,223 --> 03:15:24,158 AND THAT MEANS THAT THINGS ARE 4784 03:15:24,158 --> 03:15:25,460 FAILING ALL THE TIME. 4785 03:15:25,460 --> 03:15:28,763 WE'RE THE ONES WHO LOSE OUT. 4786 03:15:28,763 --> 03:15:31,165 SO, ESPECIALLY THIS THIRD PARTY 4787 03:15:31,165 --> 03:15:32,734 COMMUNICATION, A HUGE SOURCE OF 4788 03:15:32,734 --> 03:15:34,369 STRESS AND TIME TO JUST MAKE 4789 03:15:34,369 --> 03:15:36,104 SURE THAT THINGS ARE 4790 03:15:36,104 --> 03:15:37,105 COMMUNICATED PROPERLY. 4791 03:15:37,105 --> 03:15:38,005 THAT'S JUST, AGAIN, ILLUSTRATING 4792 03:15:38,005 --> 03:15:41,509 ONE OF THE CHALLENGES THAT GO 4793 03:15:41,509 --> 03:15:42,477 ALONG WITH LOGISTICS. 4794 03:15:42,477 --> 03:15:45,847 TO MOVE TO ANOTHER TOPIC, MAKING 4795 03:15:45,847 --> 03:15:47,081 MEDICAL DECISIONS, WHAT MAKES 4796 03:15:47,081 --> 03:15:47,949 THIS SO DIFFICULT. 4797 03:15:47,949 --> 03:15:52,220 WHEN WE LOOK AT EVIDENCE AS 4798 03:15:52,220 --> 03:15:53,821 SCIENTISTS, I'M OVERGENERALIZING 4799 03:15:53,821 --> 03:15:56,691 BUT WE LOOK AT THE BOX, THE 4800 03:15:56,691 --> 03:15:59,093 RESPONSE, SIGNIFICANCE BETWEEN 4801 03:15:59,093 --> 03:16:00,528 THE TWO, PRETTY SATISFYING IN 4802 03:16:00,528 --> 03:16:03,398 MORE RECENT YEARS WE LOOK AT 4803 03:16:03,398 --> 03:16:04,699 CLINICALLY MINIMALLY SIGNIFICANT 4804 03:16:04,699 --> 03:16:08,302 DIFFERENCES AS WELL. 4805 03:16:08,302 --> 03:16:11,472 BUT THAT'S SATISFIED WITH 4806 03:16:11,472 --> 03:16:13,775 DIFFERENCE IN AVERAGES. 4807 03:16:13,775 --> 03:16:15,476 WITH PHYSICIANS, WITH THERAPISTS 4808 03:16:15,476 --> 03:16:19,680 MY EXPERIENCE AND FROM MY 4809 03:16:19,680 --> 03:16:22,083 CONVERSATIONS, I DON'T HAVE A 4810 03:16:22,083 --> 03:16:23,718 CLINICAL DEGREE, THEY LOOK AT 4811 03:16:23,718 --> 03:16:26,687 THEIR EXPERIENCE, HAVE PATIENTS 4812 03:16:26,687 --> 03:16:27,989 BENEFITED, ANECDOTAL EVIDENCE 4813 03:16:27,989 --> 03:16:29,090 AND HOPEFULLY BEING INFLUENCED 4814 03:16:29,090 --> 03:16:30,391 BY SCIENCE BUT THAT'S NOT ALWAYS 4815 03:16:30,391 --> 03:16:31,259 THE CASE. 4816 03:16:31,259 --> 03:16:34,762 IT'S WHY WE HAVE THE FIELD OF 4817 03:16:34,762 --> 03:16:35,263 IMPLEMENTATION RESEARCH. 4818 03:16:35,263 --> 03:16:37,632 PARENTS ON THE OTHER HAND LOOK 4819 03:16:37,632 --> 03:16:38,699 AT POSSIBILITY. 4820 03:16:38,699 --> 03:16:40,802 AND YOU'RE AWARE BUT TO 4821 03:16:40,802 --> 03:16:43,638 ILLUSTRATE, WE DON'T REALLY CARE 4822 03:16:43,638 --> 03:16:44,739 IF DIFFERENCE BETWEEN AVERAGES, 4823 03:16:44,739 --> 03:16:48,009 WE DON'T SEE OUR CHILD AS A DOT 4824 03:16:48,009 --> 03:16:50,311 ON A PLOT. 4825 03:16:50,311 --> 03:16:53,080 WE WANT TO KNOW IS THERE A 4826 03:16:53,080 --> 03:16:54,615 POSSIBILITY OUR CHILD COULD 4827 03:16:54,615 --> 03:16:57,685 BENEFIT, EVEN IF 90% OF KIDS 4828 03:16:57,685 --> 03:16:59,854 DON'T, 10% DO, MAYBE IT'S WORTH 4829 03:16:59,854 --> 03:17:00,321 DOING. 4830 03:17:00,321 --> 03:17:02,089 THAT'S NOT WHAT WE'RE SEEING 4831 03:17:02,089 --> 03:17:06,394 WHEN WE LOOK AT SCIENCE, TWO 4832 03:17:06,394 --> 03:17:08,629 EXAMPLES HERE. 4833 03:17:08,629 --> 03:17:12,133 ONE OF THEM IS HYPERBARIC OXYGEN 4834 03:17:12,133 --> 03:17:12,667 THERAPY. 4835 03:17:12,667 --> 03:17:15,303 YOU MAY BE AWARE, HIGH PRESSURE 4836 03:17:15,303 --> 03:17:16,971 CONTAINER WITH CONCENTRATED 4837 03:17:16,971 --> 03:17:20,107 OXYGEN TO BREATHE IN, SO THAT 4838 03:17:20,107 --> 03:17:22,109 MEANS ONE OF US, LINDSEY OR I 4839 03:17:22,109 --> 03:17:24,212 AND LIBBY GO IN THE TUBE FOR A 4840 03:17:24,212 --> 03:17:28,549 WHILE AND FOR 40 SESSIONS, IN 4841 03:17:28,549 --> 03:17:34,989 OUR HALF A SESSION,ICS -- IT 4842 03:17:34,989 --> 03:17:37,358 TAKES A FEW MONTHS, HOPEFULLY TO 4843 03:17:37,358 --> 03:17:38,125 INDUCE NEUROGENESIS, WE DON'T 4844 03:17:38,125 --> 03:17:39,794 KNOW IF IT WILL OR NOT. 4845 03:17:39,794 --> 03:17:41,896 PARENTS LOVE THIS, IT'S 4846 03:17:41,896 --> 03:17:43,564 EXTREMELY POPULAR IN THE TBI 4847 03:17:43,564 --> 03:17:43,931 COMMUNITY. 4848 03:17:43,931 --> 03:17:45,500 SCIENTISTS HATE IT. 4849 03:17:45,500 --> 03:17:47,268 AFTER LIBBY GOT INJURED I 4850 03:17:47,268 --> 03:17:50,738 REACHED OUT AND WAS SENT A 4851 03:17:50,738 --> 03:17:53,374 REVIEW PAPER, SUPER HELPFUL, I 4852 03:17:53,374 --> 03:17:57,111 ASSUME YOU KNOW WHO DYAN SO I'M 4853 03:17:57,111 --> 03:17:57,445 NAME-DROPPING. 4854 03:17:57,445 --> 03:17:59,947 THIS IS A FIELD GUIDE TO WHAT WE 4855 03:17:59,947 --> 03:18:01,148 SHOULD DO. 4856 03:18:01,148 --> 03:18:03,518 AND I LOOKED AT THE GREEN STUFF, 4857 03:18:03,518 --> 03:18:08,289 OKAY, AS SOON AS SHE'S OUT OF 4858 03:18:08,289 --> 03:18:11,025 THIS COMA, WE'RE GOING TO GET 4859 03:18:11,025 --> 03:18:11,559 STARTED, EVIDENCE-BASED 4860 03:18:11,559 --> 03:18:12,059 MEDICINE. 4861 03:18:12,059 --> 03:18:15,162 I REMEMBER THE FIRST MEETING 4862 03:18:15,162 --> 03:18:15,963 WITH CLINICIANS, ONLY 4863 03:18:15,963 --> 03:18:19,100 EVIDENCE-BASED STUFF WE'LL DO. 4864 03:18:19,100 --> 03:18:20,535 THEN THE REALITY, SHE ISN'T FIT 4865 03:18:20,535 --> 03:18:22,937 FOR A LOT OF THESE, NOT REALLY A 4866 03:18:22,937 --> 03:18:25,039 CANDIDATE, AND IF YOU ONLY STICK 4867 03:18:25,039 --> 03:18:25,773 TO EVIDENCE-BASED MEDICINE YOU 4868 03:18:25,773 --> 03:18:28,843 WON'T DO A WHOLE LOT. 4869 03:18:28,843 --> 03:18:30,511 ONE BIG CAVEAT, THIS IS ALSO 4870 03:18:30,511 --> 03:18:34,048 CEREBRAL PALSY, NOT TRAUMATIC 4871 03:18:34,048 --> 03:18:36,217 BRAIN INJURY. 4872 03:18:36,217 --> 03:18:39,053 YOU CAN SEE HYPERBARIC OXYGEN IS 4873 03:18:39,053 --> 03:18:40,388 ONE OF THE FOUR THINGS YOU 4874 03:18:40,388 --> 03:18:41,789 SHOULD NOT DO BUT THE REASON I 4875 03:18:41,789 --> 03:18:43,791 TELL THE STORY WE 4876 03:18:43,791 --> 03:18:44,559 EVIDENCE-LOVING SCIENTISTS STILL 4877 03:18:44,559 --> 03:18:46,093 DID THIS FOR OUR CHILD. 4878 03:18:46,093 --> 03:18:49,697 SO WHY WOULD WE DO THIS, 4879 03:18:49,697 --> 03:18:50,798 SOMETHING SO COUNTERINTUITIVE? 4880 03:18:50,798 --> 03:18:51,799 IT STARTS WITH SUPPORT GROUPS. 4881 03:18:51,799 --> 03:18:54,101 I DON'T WANT TO TO TO BLAME 4882 03:18:54,101 --> 03:18:54,769 SUPPORT GROUPS. 4883 03:18:54,769 --> 03:18:56,170 YOU NEED TO TALK TO PEOPLE WHO 4884 03:18:56,170 --> 03:18:58,039 KNOW WHAT IT'S LIKE WHEN YOU'RE 4885 03:18:58,039 --> 03:18:59,040 GOING THROUGH THIS. 4886 03:18:59,040 --> 03:19:00,908 THERE'S VERY FEW PEOPLE WHO 4887 03:19:00,908 --> 03:19:06,380 COULD UNDERSTAND THIS KIND OF 4888 03:19:06,380 --> 03:19:07,381 STRAIN. 4889 03:19:07,381 --> 03:19:09,116 LIBBY OR LINDSEY FOUND THIS 4890 03:19:09,116 --> 03:19:13,588 POST, MANY OTHERS LIKE IT, WITH 4891 03:19:13,588 --> 03:19:18,526 VERY STRONG OPINIONS ABOUT HBOT. 4892 03:19:18,526 --> 03:19:20,928 YOU'RE SEEING WHAT YOU WANT TO 4893 03:19:20,928 --> 03:19:22,797 SEE, HEY, THERE'S A POSSIBILITY, 4894 03:19:22,797 --> 03:19:25,199 MY CHILD WHO HAS A SIMILAR 4895 03:19:25,199 --> 03:19:26,934 DIAGNOSIS AS THIS COULD BENEFIT 4896 03:19:26,934 --> 03:19:28,469 FROM THIS. 4897 03:19:28,469 --> 03:19:29,437 EVERYTHING ELSE WE'RE DOING 4898 03:19:29,437 --> 03:19:31,172 WE'RE SEEING A GLACIAL PACE OF 4899 03:19:31,172 --> 03:19:34,342 RECOVERY SO WHAT DO WE HAVE TO 4900 03:19:34,342 --> 03:19:35,042 LOSE, RIGHT? 4901 03:19:35,042 --> 03:19:37,111 THIS IS WHAT WE'RE FACING, 4902 03:19:37,111 --> 03:19:37,778 PARENTS POSTING THIS. 4903 03:19:37,778 --> 03:19:39,847 WE KNOW SOME OF THESE PARENTS. 4904 03:19:39,847 --> 03:19:40,848 THEY ARE REASONABLE PEOPLE, 4905 03:19:40,848 --> 03:19:41,816 SMART PEOPLE. 4906 03:19:41,816 --> 03:19:47,421 THEY ARE NOT -- THEY DON'T HAVE 4907 03:19:47,421 --> 03:19:48,055 ULTERIOR MOTIVES. 4908 03:19:48,055 --> 03:19:50,558 I'M TRYING TO BE OBJECTIVE 4909 03:19:50,558 --> 03:19:52,526 SCIENTIST, IT'S NOT WORTH OUR 4910 03:19:52,526 --> 03:19:54,729 TIME, SO LINDSAY HAD ME GO BACK 4911 03:19:54,729 --> 03:19:56,163 AND LOOK AGAIN AND SAID WHY 4912 03:19:56,163 --> 03:19:59,333 DON'T YOU LOOK AT WHAT WAS 4913 03:19:59,333 --> 03:19:59,867 BEHIND THIS DECISION. 4914 03:19:59,867 --> 03:20:01,636 AND ONE OF THE MOST POPULAR 4915 03:20:01,636 --> 03:20:03,371 THERAPIES FOR PARENTS THIS IS 4916 03:20:03,371 --> 03:20:07,108 ONLY TWO RCTs, WHAT THE CIRCLE 4917 03:20:07,108 --> 03:20:07,842 REPRESENTS, WHICH THERE'S A LOT 4918 03:20:07,842 --> 03:20:10,244 OF WAYS OF DOING THE RCT. 4919 03:20:10,244 --> 03:20:12,880 IT'S ONLY FOR CP. 4920 03:20:12,880 --> 03:20:15,049 ONE OF THE RCTs, BOTH GROUPS 4921 03:20:15,049 --> 03:20:19,320 ACTUALLY IMPROVED, THE AUTHOR 4922 03:20:19,320 --> 03:20:22,189 WROTE THAT, NOVACK, SAYING I 4923 03:20:22,189 --> 03:20:23,424 DISAGREE, AND WRITES BACK, THE 4924 03:20:23,424 --> 03:20:24,792 NUMBERS ARE THE NUMBERS. 4925 03:20:24,792 --> 03:20:25,493 A DISAGREEMENT. 4926 03:20:25,493 --> 03:20:26,894 I DIDN'T FEEL THERE WAS ENOUGH 4927 03:20:26,894 --> 03:20:28,529 REASON NOT TO DO IT. 4928 03:20:28,529 --> 03:20:30,965 HOW COULD WE DENY THE 4929 03:20:30,965 --> 03:20:33,868 POSSIBILITY OF OUR DAUGHTER 4930 03:20:33,868 --> 03:20:36,203 PERHAPS MAKING A STEP CHANGE IN 4931 03:20:36,203 --> 03:20:39,473 HER RECOVERY WHEN WHAT WE'RE 4932 03:20:39,473 --> 03:20:41,008 SEEING IS A GLACIAL PACE AND NOT 4933 03:20:41,008 --> 03:20:42,143 DO THIS. 4934 03:20:42,143 --> 03:20:43,644 THAT WENT INTO THE DECISION. 4935 03:20:43,644 --> 03:20:45,179 ONE OF THE HARDEST PARTS WHEN I 4936 03:20:45,179 --> 03:20:47,148 TALK ABOUT THIS PEOPLE ASK DID 4937 03:20:47,148 --> 03:20:47,815 IT HELP? 4938 03:20:47,815 --> 03:20:48,683 I DON'T KNOW. 4939 03:20:48,683 --> 03:20:50,785 FOR MOST OF OUR DECISIONS, WE 4940 03:20:50,785 --> 03:20:55,256 DON'T KNOW IF IT HELPS, BECAUSE 4941 03:20:55,256 --> 03:20:56,791 THE CHANGES AREN'T DRAMATIC. 4942 03:20:56,791 --> 03:20:59,226 THE ONLY TIME YOU SEE -- VERY 4943 03:20:59,226 --> 03:21:00,161 FEW THINGS CAUSE DRAMATIC 4944 03:21:00,161 --> 03:21:00,795 CHANGE. 4945 03:21:00,795 --> 03:21:02,163 IT COULD HAVE HURT, COULD HAVE 4946 03:21:02,163 --> 03:21:03,631 HELPED, WE DON'T KNOW. 4947 03:21:03,631 --> 03:21:05,599 WE MAKE THE BEST DECISION WITH 4948 03:21:05,599 --> 03:21:07,234 THE INFORMATION WE HAVE. 4949 03:21:07,234 --> 03:21:10,271 AND THAT'S WHAT WE GO WITH. 4950 03:21:10,271 --> 03:21:11,472 ULTIMATELY IT'S A REALLY 4951 03:21:11,472 --> 03:21:12,573 AGONIZING PROCESS BECAUSE YOU 4952 03:21:12,573 --> 03:21:14,442 FEEL EVERY DECISION YOU MAKE 4953 03:21:14,442 --> 03:21:16,844 COULD BE REALLY CRITICAL FOR THE 4954 03:21:16,844 --> 03:21:20,247 FUTURE OF MY DAUGHTER, AND IT 4955 03:21:20,247 --> 03:21:22,116 COULD BE THE WRONG WRONG. 4956 03:21:22,116 --> 03:21:24,051 NOT DOING IT OR DOING IT MAY BE 4957 03:21:24,051 --> 03:21:26,487 THE WRONG DECISION, AND WE DON'T 4958 03:21:26,487 --> 03:21:27,688 EVEN KNOW. 4959 03:21:27,688 --> 03:21:28,823 SO, GETTING THAT OBJECTIVE 4960 03:21:28,823 --> 03:21:30,524 INFORMATION IS REALLY IMPORTANT. 4961 03:21:30,524 --> 03:21:32,493 THE PROBLEM IS IT'S HARD TO GET 4962 03:21:32,493 --> 03:21:33,594 GOOD OBJECTIVE INFORMATION 4963 03:21:33,594 --> 03:21:34,995 BECAUSE OF VOICES YOU'RE 4964 03:21:34,995 --> 03:21:37,531 HEARING, NOT FROM ACADEMIA. 4965 03:21:37,531 --> 03:21:39,834 THE VOICES YOU'RE HEARING ARE 4966 03:21:39,834 --> 03:21:41,702 FROM PLACES TRYING TO HELP YOU 4967 03:21:41,702 --> 03:21:42,670 BUT ARE OFTEN SPONSORED BY 4968 03:21:42,670 --> 03:21:45,072 PEOPLE WHO DO HAVE A HUGE 4969 03:21:45,072 --> 03:21:45,840 FINANCIAL CONFLICT OF INTEREST 4970 03:21:45,840 --> 03:21:50,211 SO THIS WAS A REALLY, REALLY 4971 03:21:50,211 --> 03:21:51,412 HELPFUL RESOURCE. 4972 03:21:51,412 --> 03:21:54,515 THE SOLUTION THEY PROVIDE IS NOW 4973 03:21:54,515 --> 03:21:55,783 EVERYONE KNOWS SOME OF THE SAME 4974 03:21:55,783 --> 03:21:56,884 INFORMATION RATHER THAN ONE 4975 03:21:56,884 --> 03:21:58,185 FAMILY KNOWING ONE THING AND 4976 03:21:58,185 --> 03:22:00,287 ANOTHER KNOWING A DIFFERENT 4977 03:22:00,287 --> 03:22:02,123 THING. 4978 03:22:02,123 --> 03:22:04,658 THE KEYNOTE SPEAKERS ARE OFTEN 4979 03:22:04,658 --> 03:22:06,427 FUNDING THE CONFERENCE THOUGH, 4980 03:22:06,427 --> 03:22:08,929 I'M GOING TO GET TO THIS LATER, 4981 03:22:08,929 --> 03:22:11,332 I WOULD LOVE IF NIH COULD FUND A 4982 03:22:11,332 --> 03:22:13,300 RESOURCE FAIR SO WE DON'T HAVE 4983 03:22:13,300 --> 03:22:15,836 TO RELY ON PEOPLE WITH CONFLICTS 4984 03:22:15,836 --> 03:22:16,103 INTEREST. 4985 03:22:16,103 --> 03:22:16,670 PUTTING A STATEMENT AT THE 4986 03:22:16,670 --> 03:22:18,139 BEGINNING OF THE TALK DOESN'T DO 4987 03:22:18,139 --> 03:22:19,140 THAT MUCH. 4988 03:22:19,140 --> 03:22:23,210 SO ANOTHER EXAMPLE OF MEDICAL 4989 03:22:23,210 --> 03:22:25,146 DECISIONS, THIS DEVICE WHICH IN 4990 03:22:25,146 --> 03:22:29,984 YOU'RE UNFAMILIAR IS A TREXO, A 4991 03:22:29,984 --> 03:22:31,385 PEDIATRIC EXOSKELETON, MOVES THE 4992 03:22:31,385 --> 03:22:34,922 LEGS ON THE SAGITTAL PLANE LIKE 4993 03:22:34,922 --> 03:22:36,824 THE LOCAMAT, BUT IT'S AN 4994 03:22:36,824 --> 03:22:38,492 OVERGROUND VERSION. 4995 03:22:38,492 --> 03:22:41,362 WHAT I LIKE IS THEY TAKE AN 4996 03:22:41,362 --> 03:22:42,563 ALREADY EXISTING WALKER, THE 4997 03:22:42,563 --> 03:22:44,098 GREEN THING, AND PUT THEIR 4998 03:22:44,098 --> 03:22:48,636 DEVICE ON TOP OF IT. 4999 03:22:48,636 --> 03:22:52,940 SO, I HAVE AN EXO BACKGROUND. 5000 03:22:52,940 --> 03:22:55,242 I ALSO KNOW FROM MY EXPERIENCE 5001 03:22:55,242 --> 03:22:56,110 AT THE REHAB INSTITUTE THAT 5002 03:22:56,110 --> 03:22:57,745 THERE'S A LITTLE BIT OF 5003 03:22:57,745 --> 03:22:59,280 SKEPTICISM ON WHETHER THESE ARE 5004 03:22:59,280 --> 03:23:00,581 ACTUALLY VERY HELPFUL OR NOT. 5005 03:23:00,581 --> 03:23:02,683 FOR WHAT PEOPLE THEY ARE 5006 03:23:02,683 --> 03:23:02,917 HELPFUL. 5007 03:23:02,917 --> 03:23:05,119 FOR LIBBY SHE CAN ALREADY MOVE 5008 03:23:05,119 --> 03:23:06,120 HER LEGS, SHE JUST CAN'T 5009 03:23:06,120 --> 03:23:06,420 BALANCE. 5010 03:23:06,420 --> 03:23:08,722 I DON'T KNOW IF SHE'D NEED IT 5011 03:23:08,722 --> 03:23:10,891 BUT REGARDLESS I WAS HOOKED UP 5012 03:23:10,891 --> 03:23:14,395 WITH THE PERSON WHO IS A CEO OF 5013 03:23:14,395 --> 03:23:17,031 THE COMPANY, HE SHOWED ME THREE 5014 03:23:17,031 --> 03:23:18,599 INCREDIBLE ANECDOTES OF CHILDREN 5015 03:23:18,599 --> 03:23:21,402 WHO LOOK LIKE LIBBY AND THEN 5016 03:23:21,402 --> 03:23:22,837 MADE DRAMATIC RECOVERIES AFTER 5017 03:23:22,837 --> 03:23:25,139 TAKING 10,000 STEPS IN THIS 5018 03:23:25,139 --> 03:23:25,673 THING. 5019 03:23:25,673 --> 03:23:27,474 AND THAT IS EXACTLY SPEAKING 5020 03:23:27,474 --> 03:23:28,943 PARENT LANGUAGE. 5021 03:23:28,943 --> 03:23:30,177 IT DOESN'T MATTER IF A THOUSAND 5022 03:23:30,177 --> 03:23:30,744 DIDN'T DO IT. 5023 03:23:30,744 --> 03:23:33,814 IF YOU SEE THREE MAKING THOSE 5024 03:23:33,814 --> 03:23:36,116 IMPROVEMENTS, THAT IS REALLY 5025 03:23:36,116 --> 03:23:36,550 CONVINCING. 5026 03:23:36,550 --> 03:23:39,720 AND THEN I THOUGHT TO MYSELF, 5027 03:23:39,720 --> 03:23:41,589 TEN THOUSAND STEPS IN THIS 5028 03:23:41,589 --> 03:23:42,223 THING? 5029 03:23:42,223 --> 03:23:44,892 THERE'S NO RCTs ON THIS, GOOD 5030 03:23:44,892 --> 03:23:46,527 CLINICAL PRACTICE GUIDELINES SAY 5031 03:23:46,527 --> 03:23:48,829 JUST MOVING PEOPLE IN A 5032 03:23:48,829 --> 03:23:50,231 KINEMATIC TRAJECTORY DOESN'T 5033 03:23:50,231 --> 03:23:51,532 TEACH THE KINEMATIC TRAJECTORY, 5034 03:23:51,532 --> 03:23:52,533 MAYBE THIS GUY KNOWS SOMETHING 5035 03:23:52,533 --> 03:23:53,400 WE DON'T KNOW. 5036 03:23:53,400 --> 03:23:56,403 BUT IT'S A THOUSAND DOLLARS A 5037 03:23:56,403 --> 03:23:58,005 MONTH TO RENT, 10,000 STEPS 5038 03:23:58,005 --> 03:23:59,006 MEANS DROPPING ALL OTHER 5039 03:23:59,006 --> 03:24:01,208 THERAPIES TO DO THIS AND ON TOP 5040 03:24:01,208 --> 03:24:03,611 OF THAT WHERE WAS SHE WALKING 5041 03:24:03,611 --> 03:24:03,978 TO? 5042 03:24:03,978 --> 03:24:04,912 WHY IS SHE WALKING? 5043 03:24:04,912 --> 03:24:07,514 SHE'S NOT GOING TO WALK JUST TO 5044 03:24:07,514 --> 03:24:07,848 WALK. 5045 03:24:07,848 --> 03:24:08,115 I PASSED. 5046 03:24:08,115 --> 03:24:09,617 BUT I DON'T KNOW IF THAT WAS THE 5047 03:24:09,617 --> 03:24:10,818 RIGHT DECISION OR NOTE. 5048 03:24:10,818 --> 03:24:12,686 MAYBE THERE IS SOMETHING TO 5049 03:24:12,686 --> 03:24:13,454 THIS. 5050 03:24:13,454 --> 03:24:14,421 BUT WE'LL NEVER KNOW. 5051 03:24:14,421 --> 03:24:16,090 THAT'S THE TYPE OF DECISION WE 5052 03:24:16,090 --> 03:24:18,025 HAVE TO MAKE. 5053 03:24:18,025 --> 03:24:20,895 FOR A PARENT WHO DON'T HAVE MY 5054 03:24:20,895 --> 03:24:21,862 BACKGROUND AND KNOW GOOD 5055 03:24:21,862 --> 03:24:24,265 CLINICAL PRACTICE GUIDELINES AND 5056 03:24:24,265 --> 03:24:26,033 HISTORY OF EXOS, IT'S A HARD 5057 03:24:26,033 --> 03:24:27,001 DECISION, PROBABLY TRYING TO 5058 03:24:27,001 --> 03:24:30,504 SELL THE FAMILY FARM TO PAY FOR 5059 03:24:30,504 --> 03:24:31,805 THIS AND IT'S TOUGH. 5060 03:24:31,805 --> 03:24:35,442 I'M GOING TO MOVE ON, TALK ABOUT 5061 03:24:35,442 --> 03:24:37,278 HOW MY LIVED EXPERIENCE HAS 5062 03:24:37,278 --> 03:24:38,512 MAYBE CONTRIBUTED TO LIBBY'S 5063 03:24:38,512 --> 03:24:41,448 RECOVERY AND WHAT I'VE TRIED. 5064 03:24:41,448 --> 03:24:43,617 AFTER I GOT BACK FROM THE 5065 03:24:43,617 --> 03:24:44,818 HOSPITAL, I RECRUITED STUDENTS 5066 03:24:44,818 --> 03:24:46,353 TO WORK ON PROJECTS FOR HER. 5067 03:24:46,353 --> 03:24:49,990 WE DID A NUMBER OF THINGS. 5068 03:24:49,990 --> 03:24:52,293 THIS IS AN EARLY VERSION, SO WE 5069 03:24:52,293 --> 03:24:53,727 WOULD KNOW FORCE DISTRIBUTION 5070 03:24:53,727 --> 03:24:54,795 AND STANDARD. 5071 03:24:54,795 --> 03:24:57,431 WE DID A BALANCE AND BODY WEIGHT 5072 03:24:57,431 --> 03:24:59,066 SUPPORT DEVICE THAT WAS MOBILE. 5073 03:24:59,066 --> 03:25:01,035 WE TRACKED HER VISION BECAUSE 5074 03:25:01,035 --> 03:25:03,537 IT'S REALLY FRUSTRATING TRYING 5075 03:25:03,537 --> 03:25:05,539 TO GET QUANTITATIVE INFORMATION 5076 03:25:05,539 --> 03:25:07,741 IN OUR OPHTHALMOLOGIST, ACTIVITY 5077 03:25:07,741 --> 03:25:09,009 BOARD, SWALLOWING SENSORS, VIDEO 5078 03:25:09,009 --> 03:25:11,111 GAMES, INTERACTIVE BOARDS. 5079 03:25:11,111 --> 03:25:14,715 LIBBY'S PERSONAL FAVORITE, A 5080 03:25:14,715 --> 03:25:15,783 RIDE-ON CAR. 5081 03:25:15,783 --> 03:25:17,217 THREE SWITCHES TO CHALLENGE HER 5082 03:25:17,217 --> 03:25:20,287 GRASPING AND USE THE CAR AS A 5083 03:25:20,287 --> 03:25:21,588 MOTIVATING PLATFORM. 5084 03:25:21,588 --> 03:25:23,557 I WOULD SAY IN GENERAL MOST OF 5085 03:25:23,557 --> 03:25:25,759 THE STUFF WAS PROBABLY A FAILURE 5086 03:25:25,759 --> 03:25:28,295 OR DIDN'T WORK QUITE AS WELL TO 5087 03:25:28,295 --> 03:25:29,263 BE IMPLEMENTED. 5088 03:25:29,263 --> 03:25:30,831 REALLY THE MAIN BENEFIT WAS NOT 5089 03:25:30,831 --> 03:25:33,968 SO MUCH LIKE A LITTLE BIT 5090 03:25:33,968 --> 03:25:37,571 BENEFIT, MY EXPERIENCE, BUT MORE 5091 03:25:37,571 --> 03:25:39,440 HER EXPERIENCES BENEFITED MY 5092 03:25:39,440 --> 03:25:39,707 RESEARCH. 5093 03:25:39,707 --> 03:25:41,275 THIS IS AN EXCERPT TAKEN FROM 5094 03:25:41,275 --> 03:25:43,243 THE JOURNAL PAPER LINDSAY AND I 5095 03:25:43,243 --> 03:25:44,912 WROTE, MAYBE SOME OF YOU ARE 5096 03:25:44,912 --> 03:25:46,647 FAMILIAR, A COUPLE YEARS AGO. 5097 03:25:46,647 --> 03:25:48,749 WE WROTE IT NINE MONTHS AFTER 5098 03:25:48,749 --> 03:25:50,284 LIBBY GOT INJURED. 5099 03:25:50,284 --> 03:25:51,685 IT STILL HOLDS. 5100 03:25:51,685 --> 03:25:54,521 AND THIS MAIN QUESTION RIGHT 5101 03:25:54,521 --> 03:25:57,291 HERE, CAN WE USE SIMPLER 5102 03:25:57,291 --> 03:25:57,891 TECHNOLOGY? 5103 03:25:57,891 --> 03:25:58,826 THIS WAS SOMETHING THAT -- 5104 03:25:58,826 --> 03:26:00,761 YOU'VE HEARD A MILLION TIMES TO 5105 03:26:00,761 --> 03:26:02,229 KEEP THINGS SIMPLE BUT WE STILL 5106 03:26:02,229 --> 03:26:04,398 HAVE A BIAS JUST BECAUSE WE HAVE 5107 03:26:04,398 --> 03:26:05,632 THIS ADVANCED TECHNOLOGY IT'S 5108 03:26:05,632 --> 03:26:08,035 AUTOMATICALLY GOING TO MAKE 5109 03:26:08,035 --> 03:26:09,103 PEOPLE BETTER. 5110 03:26:09,103 --> 03:26:11,739 AND NOT TO SAY IT COULDN'T. 5111 03:26:11,739 --> 03:26:14,475 BUT TO ASSUME TO HAVE THAT BIAS 5112 03:26:14,475 --> 03:26:15,476 ADVANCED TECHNOLOGY IS BETTER 5113 03:26:15,476 --> 03:26:16,877 WITHOUT BEING APPRECIATIVE OF 5114 03:26:16,877 --> 03:26:19,813 THE BAGGAGE IT CARRIES, THE 5115 03:26:19,813 --> 03:26:21,248 EXPENSE, COMPLEXITY, DIFFICULTY 5116 03:26:21,248 --> 03:26:24,418 TO IMPLEMENT, DIFFICULTY TO FIX. 5117 03:26:24,418 --> 03:26:26,286 THESE ARE ALL GOING TO HAPPEN. 5118 03:26:26,286 --> 03:26:28,355 SO IF WE HAVE THE SIMPLEST 5119 03:26:28,355 --> 03:26:31,191 TECHNOLOGY POSSIBLE THAT GETS 5120 03:26:31,191 --> 03:26:33,660 THE JOB DONE, THAT SHOULD BE, 5121 03:26:33,660 --> 03:26:34,695 YOU KNOW, APPRECIATED RATHER 5122 03:26:34,695 --> 03:26:37,431 THAN THIS BIAS WE HAVE OF MORE 5123 03:26:37,431 --> 03:26:38,766 TECHNOLOGY IS BETTER. 5124 03:26:38,766 --> 03:26:40,401 ANOTHER MAJOR POINT THAT I 5125 03:26:40,401 --> 03:26:42,002 DIDN'T REALLY CONSIDER BEFORE 5126 03:26:42,002 --> 03:26:44,438 HER INJURY WAS WHETHER IT CAN 5127 03:26:44,438 --> 03:26:45,639 ADDRESS MULTIPLE IMPAIRMENTS. 5128 03:26:45,639 --> 03:26:49,209 LIBBY HAS A VERY BUSY SCHEDULE. 5129 03:26:49,209 --> 03:26:50,344 IT IS DIFFICULT TO DO. 5130 03:26:50,344 --> 03:26:53,313 WE DID SPRINT FOR THE FIRST 5131 03:26:53,313 --> 03:26:56,250 COUPLE YEARS, BEFORE SHE STARTED 5132 03:26:56,250 --> 03:26:57,684 SCHOOL, AND IT WAS VERY 5133 03:26:57,684 --> 03:27:02,189 DIFFICULT TO FIND TIME IN DAY TO 5134 03:27:02,189 --> 03:27:03,390 WORK ON IMPAIRMENTS. 5135 03:27:03,390 --> 03:27:04,391 IF THERE'S SOMETHING THAT CAN 5136 03:27:04,391 --> 03:27:06,360 KILL TWO OR THREE BIRDS WITH ONE 5137 03:27:06,360 --> 03:27:07,027 STONE THAT'S HELPFUL. 5138 03:27:07,027 --> 03:27:09,096 THE MOST MORE THAN POINT ISN'T 5139 03:27:09,096 --> 03:27:12,166 ON THE LIST, CAN YOU ACTUALLY 5140 03:27:12,166 --> 03:27:14,601 INTEGRATE INTO SOMEONE'S DAILY 5141 03:27:14,601 --> 03:27:14,935 LIFE? 5142 03:27:14,935 --> 03:27:16,003 IF SHE'S ALREADY HAPPY GOING TO 5143 03:27:16,003 --> 03:27:17,204 THE GROCERY STORE AND ALREADY 5144 03:27:17,204 --> 03:27:18,539 LIKES PLAYING WITH THINGS MAYBE 5145 03:27:18,539 --> 03:27:20,941 WE CAN PUT HER IN HER DAY 5146 03:27:20,941 --> 03:27:22,876 TRAINER AND HAVE HER INTERACT 5147 03:27:22,876 --> 03:27:25,245 WITH PEOPLE, PULL STUFF OFF THE 5148 03:27:25,245 --> 03:27:26,713 SHELVES, SHE'S TRAINING ALL 5149 03:27:26,713 --> 03:27:32,853 SORTS OF THINGS BY DOING THAT 5150 03:27:32,853 --> 03:27:33,821 SIMPLE WEEKLY ACTIVITY. 5151 03:27:33,821 --> 03:27:36,457 I HOPE I'M MAKING A POINT I FEEL 5152 03:27:36,457 --> 03:27:38,325 I'VE DEVELOPED AN EXPERTISE IN 5153 03:27:38,325 --> 03:27:40,094 UNDERSTANDING HOW THINGS FIT 5154 03:27:40,094 --> 03:27:40,394 TOGETHER. 5155 03:27:40,394 --> 03:27:42,596 THAT GOES TO THE MAIN THESIS OF 5156 03:27:42,596 --> 03:27:47,634 THE TALK, LIVED EXPERIENCE IS A 5157 03:27:47,634 --> 03:27:51,772 QUALIFICATION. 5158 03:27:51,772 --> 03:27:53,640 BEFORE THE INJURY, I WOULD GO TO 5159 03:27:53,640 --> 03:27:55,943 A CLINICIAN AND GET A FULL 5160 03:27:55,943 --> 03:27:57,578 IMPRESSION OF SOMEONE. 5161 03:27:57,578 --> 03:27:58,879 IT'S A VERY IMPORTANT 5162 03:27:58,879 --> 03:27:59,780 PERSPECTIVE FROM A CLINICIAN BUT 5163 03:27:59,780 --> 03:28:02,082 WHAT THEY ARE GOING TO KNOW IS A 5164 03:28:02,082 --> 03:28:03,717 BROAD PERSPECTIVE OF A NARROW 5165 03:28:03,717 --> 03:28:05,185 PART OF A PATIENT. 5166 03:28:05,185 --> 03:28:06,553 AS SCIENTISTS YOU CAN SAY THE 5167 03:28:06,553 --> 03:28:07,221 SAME THING. 5168 03:28:07,221 --> 03:28:08,422 ONLY SOMEONE WITH THAT LIVED 5169 03:28:08,422 --> 03:28:09,389 EXPERIENCE WHEN YOU'RE WITH 5170 03:28:09,389 --> 03:28:12,359 SOMEONE ALL DAY ARE YOU GOING 5171 03:28:12,359 --> 03:28:13,560 SEE THE DIFFERENT VERTICAL 5172 03:28:13,560 --> 03:28:13,861 PERSPECTIVE. 5173 03:28:13,861 --> 03:28:16,130 THE POINT HERE IS WE SHOULD 5174 03:28:16,130 --> 03:28:18,632 CENTRAL PERSPECTIVE AS MUCH AS A 5175 03:28:18,632 --> 03:28:21,268 CLINICIAN OR SCIENTIST, IT 5176 03:28:21,268 --> 03:28:22,469 SHOULD BE INCLUDED ALTOGETHER. 5177 03:28:22,469 --> 03:28:26,273 WHEN I BRING UP THE QUESTION, DO 5178 03:28:26,273 --> 03:28:29,276 YOU VALUE -- DO YOU AGREE LIVED 5179 03:28:29,276 --> 03:28:30,244 EXPERIENCE IS A QUALIFICATION, A 5180 03:28:30,244 --> 03:28:31,778 LOT OF PEOPLE, JUST ABOUT 5181 03:28:31,778 --> 03:28:33,547 EVERYONE IS GOING TO SAY YES. 5182 03:28:33,547 --> 03:28:34,515 BUT I DON'T THINK WE DO. 5183 03:28:34,515 --> 03:28:37,050 I DON'T THINK WE FULLY VALUE 5184 03:28:37,050 --> 03:28:38,919 THAT POINT. 5185 03:28:38,919 --> 03:28:39,920 A FEW EXAMPLES. 5186 03:28:39,920 --> 03:28:42,556 THE FIRST, MANY OF YOU HAVE SEEN 5187 03:28:42,556 --> 03:28:46,360 MAD MEN, THOSE WHO HAVEN'T IT 5188 03:28:46,360 --> 03:28:47,661 TAKES PLACE IN MANHATTAN, NEW 5189 03:28:47,661 --> 03:28:50,964 YORK ADVERTISING FIRM. 5190 03:28:50,964 --> 03:28:52,266 VERY MALE DOMINATED. 5191 03:28:52,266 --> 03:28:54,568 LET'S, FOR EXAMPLE, BELIEVE 5192 03:28:54,568 --> 03:28:56,103 YOU'RE IN THIS MADISON AVENUE 5193 03:28:56,103 --> 03:28:57,504 ADVERTISING FIRM SELLING WOMEN'S 5194 03:28:57,504 --> 03:28:59,740 LIPSTICK, HOW WOULD YOU INCLUDE 5195 03:28:59,740 --> 03:29:01,241 THE FEMALE PERSPECTIVE? 5196 03:29:01,241 --> 03:29:05,846 THIS IS A PLOT LINE FROM THE 5197 03:29:05,846 --> 03:29:06,146 SHOW. 5198 03:29:06,146 --> 03:29:07,681 FIRST YOU SAY YOU'RE JUST GOING 5199 03:29:07,681 --> 03:29:09,216 TO TELL THEM WHAT THEY WANT 5200 03:29:09,216 --> 03:29:11,418 BECAUSE YOU'RE A MAN, THEY LIKE 5201 03:29:11,418 --> 03:29:14,588 MEN SO YOU KNOW WHAT THEY WANT. 5202 03:29:14,588 --> 03:29:17,424 AT RIDICULOUS AS THIS SOUNDS, 5203 03:29:17,424 --> 03:29:18,525 EARLY 1960s, NEW YORK, THIS 5204 03:29:18,525 --> 03:29:20,260 ISN'T FAR AWAY FROM WHAT WE DO 5205 03:29:20,260 --> 03:29:21,128 IN SCIENCE NOW. 5206 03:29:21,128 --> 03:29:21,862 IT'S SIMILAR. 5207 03:29:21,862 --> 03:29:23,997 IN FACT I DID THIS FOR MY 5208 03:29:23,997 --> 03:29:24,198 Ph.D. 5209 03:29:24,198 --> 03:29:28,769 SO WHAT I DID WAS I GOT 5210 03:29:28,769 --> 03:29:31,738 BIOMECHANIC NIST, THERAPISTS, 5211 03:29:31,738 --> 03:29:36,476 PHYSICAL PHYSIATRISTS IN A 5212 03:29:36,476 --> 03:29:39,713 ROOM, WHAT DO THEY NEED AFTER 5213 03:29:39,713 --> 03:29:41,081 STROKE, I THOUGHT IT WAS STATE 5214 03:29:41,081 --> 03:29:42,683 OF THE ART AT THE TIME. 5215 03:29:42,683 --> 03:29:43,684 I NEVER ONCE CONSIDERED ASKING 5216 03:29:43,684 --> 03:29:45,652 SOMEONE WHO HAS HAD A STROKE AND 5217 03:29:45,652 --> 03:29:48,822 HAS STIFF KNEE GAIT WHAT THEY 5218 03:29:48,822 --> 03:29:49,156 NEED. 5219 03:29:49,156 --> 03:29:50,891 SO I'M RIGHT THERE ASSUMING I 5220 03:29:50,891 --> 03:29:54,628 KNOW BETTER FOR THE PEOPLE WITH 5221 03:29:54,628 --> 03:29:59,866 STROKE THAN FOR THEM. 5222 03:29:59,866 --> 03:30:01,201 SECOND, I COULD ASK WOMEN WHAT 5223 03:30:01,201 --> 03:30:03,403 THEY THOUGHT AFTER THEY BUY IT. 5224 03:30:03,403 --> 03:30:05,806 A LOT OF RESEARCHERS FEEL 5225 03:30:05,806 --> 03:30:07,341 COMFORTABLE IN HAVING THAT AS 5226 03:30:07,341 --> 03:30:08,875 THE ONLY FEEDBACK. 5227 03:30:08,875 --> 03:30:11,712 IT'S STILL VALUABLE, YOU'RE 5228 03:30:11,712 --> 03:30:13,680 ASKING PEOPLE WHAT THEY THOUGHT 5229 03:30:13,680 --> 03:30:16,516 ABOUT THE EXPERIMENT AFTER THEY 5230 03:30:16,516 --> 03:30:17,084 PARTICIPATE. 5231 03:30:17,084 --> 03:30:18,185 YOU'RE NOT REALLY USING THEM FOR 5232 03:30:18,185 --> 03:30:19,720 EVERYTHING THEY CAN PROVIDE. 5233 03:30:19,720 --> 03:30:22,422 THERE'S A LOT MORE THEY CAN 5234 03:30:22,422 --> 03:30:23,757 BRING TO THE TABLE RATHER THAN A 5235 03:30:23,757 --> 03:30:25,058 THUMBS UP OR DOWN. 5236 03:30:25,058 --> 03:30:27,127 THE SECOND PROBLEM WITH THIS IS 5237 03:30:27,127 --> 03:30:30,097 THAT THE RESEARCHER HAS FULL 5238 03:30:30,097 --> 03:30:32,933 POWER TO ACCEPT OR REJECT ANY 5239 03:30:32,933 --> 03:30:34,568 OPINION THAT THEY WISH. 5240 03:30:34,568 --> 03:30:36,436 WHAT ABOUT A FOCUS GROUP? 5241 03:30:36,436 --> 03:30:37,638 YOU COULD CONVENE A FOCUS GROUP 5242 03:30:37,638 --> 03:30:39,806 AND HE THAT DID THIS IN THE SHOW 5243 03:30:39,806 --> 03:30:41,775 AS WELL TO UNDERSTAND WHAT WOMEN 5244 03:30:41,775 --> 03:30:42,109 WANT. 5245 03:30:42,109 --> 03:30:44,845 FOCUS GROUPS ARE A NICE TOOL. 5246 03:30:44,845 --> 03:30:49,883 BUT IT STILL HAS THE SAME ISSUE 5247 03:30:49,883 --> 03:30:51,285 OF VALIDATING OR INVALIDATING 5248 03:30:51,285 --> 03:30:52,619 THE IDEA, NOT USING PEOPLE TO 5249 03:30:52,619 --> 03:30:53,920 THE BEST EFFECT, AND THE 5250 03:30:53,920 --> 03:30:55,022 RESEARCHER STILL HAS ALL THE 5251 03:30:55,022 --> 03:30:57,090 POWER TO ACCEPT OR DENY ANYTHING 5252 03:30:57,090 --> 03:30:57,991 THEY WOULD LIKE. 5253 03:30:57,991 --> 03:31:02,262 AND THEN IN THE SHOW THEY HIRE 5254 03:31:02,262 --> 03:31:03,697 ELIZABETH MOSS, THE ACCOUNT GOES 5255 03:31:03,697 --> 03:31:06,333 VERY WELL, ET CETERA. 5256 03:31:06,333 --> 03:31:08,535 AGAIN, THIS IS EARLY 1960s NEW 5257 03:31:08,535 --> 03:31:08,735 YORK. 5258 03:31:08,735 --> 03:31:10,370 HOW MANY STUDIES HIRE SOMEONE 5259 03:31:10,370 --> 03:31:14,341 WITH LIVED EXPERIENCE RIGHT NOW? 5260 03:31:14,341 --> 03:31:17,611 IT ISN'T SURPRISING, IT ISN'T 5261 03:31:17,611 --> 03:31:19,813 COMMON, IT DOES HAPPEN, AS WE 5262 03:31:19,813 --> 03:31:21,315 ALL KNOW WE'RE NOT SELLING TO 5263 03:31:21,315 --> 03:31:23,183 PEOPLE WITH LIVED EXPERIENCE OR 5264 03:31:23,183 --> 03:31:24,918 PEOPLE WITH DISABILITIES. 5265 03:31:24,918 --> 03:31:27,020 WE'RE SELLING TO OTHER 5266 03:31:27,020 --> 03:31:27,487 SCIENTISTS. 5267 03:31:27,487 --> 03:31:30,223 SO WE'RE NOT IN THE FREE MARKET 5268 03:31:30,223 --> 03:31:30,457 SYSTEM. 5269 03:31:30,457 --> 03:31:32,392 AND A LOT OF PEOPLE BROUGHT UP 5270 03:31:32,392 --> 03:31:33,927 IF I'M GOING TO GO THROUGH ALL 5271 03:31:33,927 --> 03:31:37,464 THIS TROUBLE WITH THE EVIDENCE 5272 03:31:37,464 --> 03:31:38,865 THAT INCLUSION OF LIVED 5273 03:31:38,865 --> 03:31:41,268 EXPERIENCE IS HELPFUL, WHY WOULD 5274 03:31:41,268 --> 03:31:42,903 WE DO THAT? 5275 03:31:42,903 --> 03:31:43,704 MY COLLEAGUE KIM ANDERSON HAS 5276 03:31:43,704 --> 03:31:46,073 DONE A LOT TO SHOW THAT, 5277 03:31:46,073 --> 03:31:49,676 ACTUALLY BENEFITING SPINAL CORD 5278 03:31:49,676 --> 03:31:51,111 INJURY RESEARCH, OTHER FIELDS AS 5279 03:31:51,111 --> 03:31:51,445 WELL. 5280 03:31:51,445 --> 03:31:54,281 I'VE LISTED A BUNCH OF WAYS IT 5281 03:31:54,281 --> 03:31:55,716 CAN HELP. 5282 03:31:55,716 --> 03:31:58,285 RECRUITMENT, OUTCOME MEASURES, 5283 03:31:58,285 --> 03:31:58,985 COMMUNITY OUTREACH, 5284 03:31:58,985 --> 03:32:01,621 DISSEMINATION, ALL OF THESE 5285 03:32:01,621 --> 03:32:02,622 ASPECTS, INCLUSION, LIVED 5286 03:32:02,622 --> 03:32:04,691 EXPERIENCE, CAN HELP IMPROVE THE 5287 03:32:04,691 --> 03:32:12,132 RESEARCH PROCESS. . 5288 03:32:12,132 --> 03:32:18,939 ANOTHER EXAMPLE, LET'S SAY 5289 03:32:18,939 --> 03:32:20,674 YOU'RE A HISTORY STUDENT, YOU'RE 5290 03:32:20,674 --> 03:32:24,745 AN INDIAN STUDENT LOOKING AT 5291 03:32:24,745 --> 03:32:26,380 PROGRAMS IN INDIAN HITS, WOULD 5292 03:32:26,380 --> 03:32:31,618 YOU TAKE ONE TAUGHT BY ENGLISH, 5293 03:32:31,618 --> 03:32:34,054 WITH RECOMMENDATIONS FROM A 5294 03:32:34,054 --> 03:32:36,656 PLACE NOT REPRESENTED FROM 5295 03:32:36,656 --> 03:32:37,758 INDIA, EXAMPLE OF TOKENISM, OR 5296 03:32:37,758 --> 03:32:40,060 TAKE ONE TAUGHT BY VARIOUS 5297 03:32:40,060 --> 03:32:41,228 INDIVIDUALS FROM DIFFERENT 5298 03:32:41,228 --> 03:32:41,928 INDIAN IDENTITIES AND OUTSIDE 5299 03:32:41,928 --> 03:32:43,897 THE COMMUNITY WHICH IS OF COURSE 5300 03:32:43,897 --> 03:32:45,866 PROBABLY MAKES THE MOST SENSE. 5301 03:32:45,866 --> 03:32:49,369 IF YOU'RE AN END USER WOULD YOU 5302 03:32:49,369 --> 03:32:50,804 THERE'S THE SYSTEM THAT DOESN'T 5303 03:32:50,804 --> 03:32:53,306 INCLUDE PEOPLE WHO UNDERSTAND 5304 03:32:53,306 --> 03:32:53,607 YOU? 5305 03:32:53,607 --> 03:32:54,875 WHEN DOES THAT HAPPEN? 5306 03:32:54,875 --> 03:32:59,813 I HAD A TALENTED UNDERGRADUATE 5307 03:32:59,813 --> 03:33:02,983 WHO DID AN EVALUATION OF PARENTS 5308 03:33:02,983 --> 03:33:04,818 AND WHAT INFLUENCED MEDICAL 5309 03:33:04,818 --> 03:33:06,620 DECISIONS REQUIRING DEVICES. 5310 03:33:06,620 --> 03:33:07,821 SHE FOUND CLINICIAN 5311 03:33:07,821 --> 03:33:08,622 RECOMMENDATIONS AND SCIENTIFIC 5312 03:33:08,622 --> 03:33:10,657 EVIDENCE WERE THE LOWEST RATED 5313 03:33:10,657 --> 03:33:11,858 FACTORS MAKING A MEDICAL 5314 03:33:11,858 --> 03:33:12,459 DECISION. 5315 03:33:12,459 --> 03:33:16,663 SO MAYBE THIS IS A BIAS. 5316 03:33:16,663 --> 03:33:20,066 JESS LONDON, A MOM OF TWO 5317 03:33:20,066 --> 03:33:21,835 CHILDREN WITH CP, STARTED THIS 5318 03:33:21,835 --> 03:33:24,237 WEBSITE, IT'S NOW AN APP, A 5319 03:33:24,237 --> 03:33:25,872 SUCCESSFUL APP, AND WHAT WE'RE 5320 03:33:25,872 --> 03:33:28,074 SEEING RIGHT HERE IS SOCIAL 5321 03:33:28,074 --> 03:33:28,708 MEDIA AND PERSONAL 5322 03:33:28,708 --> 03:33:30,577 RECOMMENDATIONS ARE BY FAR WHAT 5323 03:33:30,577 --> 03:33:33,447 IS MOST HIGHLY INFLUENCING 5324 03:33:33,447 --> 03:33:34,748 PEOPLE MAKING DECISIONS. 5325 03:33:34,748 --> 03:33:36,850 ACADEMIC ARTICLES, THE FAMILIES 5326 03:33:36,850 --> 03:33:38,652 I KNOW DON'T CITE ACADEMIC 5327 03:33:38,652 --> 03:33:41,888 ARTICLES AS INFLUENCING THEIR 5328 03:33:41,888 --> 03:33:42,355 DECISIONS. 5329 03:33:42,355 --> 03:33:43,223 IT'S PERSONAL RECOMMENDATIONS 5330 03:33:43,223 --> 03:33:45,826 AND SOCIAL MEDIA. 5331 03:33:45,826 --> 03:33:47,594 I THINK THIS DIVIDE BETWEEN WHAT 5332 03:33:47,594 --> 03:33:49,763 SCIENCE IS SHOWING AND WHAT 5333 03:33:49,763 --> 03:33:51,431 PEOPLE ARE DOING IS 5334 03:33:51,431 --> 03:33:53,934 REPRESENTATIVE OF LACK OF TRUST. 5335 03:33:53,934 --> 03:33:57,771 LET'S GO TO THE THIRD EXAMPLE, 5336 03:33:57,771 --> 03:34:00,173 PLANET OF THE APES, LET'S 5337 03:34:00,173 --> 03:34:01,374 PRETEND YOU'RE AN APE. 5338 03:34:01,374 --> 03:34:03,443 AND THE HUMANS WANT TO HAVE A 5339 03:34:03,443 --> 03:34:04,344 VOICE IN PARLIAMENT. 5340 03:34:04,344 --> 03:34:06,513 SO WHAT DO YOU DO? 5341 03:34:06,513 --> 03:34:08,715 DO YOU REQUIRE YEARS OF RESEARCH 5342 03:34:08,715 --> 03:34:11,885 TO DETERMINE THE VALUE OF 5343 03:34:11,885 --> 03:34:13,587 PUTTING THEM IN PARLIAMENT? 5344 03:34:13,587 --> 03:34:15,255 WHICH IS WHAT SOME PEOPLE WOULD 5345 03:34:15,255 --> 03:34:17,791 LIKE, WHERE IS THE EVIDENCE. 5346 03:34:17,791 --> 03:34:19,426 WOULD YOU RESIST CHANGE BECAUSE 5347 03:34:19,426 --> 03:34:21,361 OF PRACTICE ISSUES SUCH AS 5348 03:34:21,361 --> 03:34:23,497 DETERMINING WHO IS HUMAN OR IF 5349 03:34:23,497 --> 03:34:25,098 THEY WOULD ADVOCATE FOR 5350 03:34:25,098 --> 03:34:27,300 THEMSELVES WHY WOULD WE INCLUDE 5351 03:34:27,300 --> 03:34:27,534 THEM? 5352 03:34:27,534 --> 03:34:29,035 SIMILAR TO SAYING, WELL, HOW DO 5353 03:34:29,035 --> 03:34:31,238 WE KNOW WHO HAS LIVED 5354 03:34:31,238 --> 03:34:31,538 EXPERIENCE? 5355 03:34:31,538 --> 03:34:32,606 THAT'S A STICKY QUESTION. 5356 03:34:32,606 --> 03:34:33,874 HOW CLOSE DO YOU HAVE TO BE? 5357 03:34:33,874 --> 03:34:35,642 I DON'T HAVE A NEUROLOGICAL 5358 03:34:35,642 --> 03:34:38,378 INJURY, BUT I STILL CONSIDER 5359 03:34:38,378 --> 03:34:39,446 MYSELF HAVING LIVED EXPERIENCE. 5360 03:34:39,446 --> 03:34:41,515 AND AS FAR AS PEOPLE ONLY 5361 03:34:41,515 --> 03:34:42,516 ADVOCATING FOR THEMSELVES I'LL 5362 03:34:42,516 --> 03:34:44,150 GET INTO THAT IN A LITTLE BUT I 5363 03:34:44,150 --> 03:34:45,585 DON'T THINK THAT'S A PROBLEM. 5364 03:34:45,585 --> 03:34:48,088 I THINK THEY ARE SUPPOSED TO 5365 03:34:48,088 --> 03:34:50,056 ADVOCATE FOR THEMSELVES AND 5366 03:34:50,056 --> 03:34:51,925 SHOULD BE THERE. 5367 03:34:51,925 --> 03:34:57,063 WHAT IF WE REQUIRE CURRENT 5368 03:34:57,063 --> 03:34:58,832 PARLIAMENTARIANS, APES, TO WRITE 5369 03:34:58,832 --> 03:34:59,699 A SUMMARY? 5370 03:34:59,699 --> 03:35:02,168 I'M AFRAID THIS IS WHERE THIS 5371 03:35:02,168 --> 03:35:05,805 GREAT IDEA OF THE PLAN TO 5372 03:35:05,805 --> 03:35:07,140 INCLUDE LIVED EXPERIENCE, I'M 5373 03:35:07,140 --> 03:35:08,675 AFRAID WE'RE JUST SCIENTISTS 5374 03:35:08,675 --> 03:35:09,776 TRYING TO CONVINCE OTHER 5375 03:35:09,776 --> 03:35:11,077 SCIENTISTS WE'RE REPRESENTING 5376 03:35:11,077 --> 03:35:12,479 PEOPLE WITH LIVED EXPERIENCE. 5377 03:35:12,479 --> 03:35:15,115 OF COURSE, YOU CAN PROVIDE 5378 03:35:15,115 --> 03:35:15,615 REPRESENTATION. 5379 03:35:15,615 --> 03:35:16,783 ARE PEOPLE WITH LIVED EXPERIENCE 5380 03:35:16,783 --> 03:35:18,752 BEING PROVIDED A PLACE WITHIN 5381 03:35:18,752 --> 03:35:19,853 THE POWER STRUCTURE? 5382 03:35:19,853 --> 03:35:21,154 AND I DON'T KNOW WHAT NIH IS 5383 03:35:21,154 --> 03:35:23,456 MADE OF OR WHAT THE POWER 5384 03:35:23,456 --> 03:35:24,558 STRUCTURE IS EXACTLY BUT I THINK 5385 03:35:24,558 --> 03:35:26,092 THAT'S FOR YOU TO ASK THIS 5386 03:35:26,092 --> 03:35:26,826 QUESTION. 5387 03:35:26,826 --> 03:35:28,528 IT DOES HAVE AN EFFECT. 5388 03:35:28,528 --> 03:35:29,829 THOSE OF YOU FAMILIAR WITH THE 5389 03:35:29,829 --> 03:35:32,232 AUTISM COMMUNITY KNOW THERE'S A 5390 03:35:32,232 --> 03:35:40,440 DUST-UP I RECENTLY WITH "THE 5391 03:35:40,440 --> 03:35:41,775 LANCET" PAPER, WHICH WAY SHOULD 5392 03:35:41,775 --> 03:35:43,944 IT GO AND THE AUTISM COMMUNITY 5393 03:35:43,944 --> 03:35:45,378 DIDN'T AGREE AND WEREN'T HAPPY 5394 03:35:45,378 --> 03:35:46,446 THEY GOT LEFT OUT. 5395 03:35:46,446 --> 03:35:48,782 THEY ARE LOOKING FOR A VOICE, 5396 03:35:48,782 --> 03:35:51,084 FOR A WAY OF HELPING INFLUENCE 5397 03:35:51,084 --> 03:35:53,286 THE RESEARCH AGENDA, NOT THE 5398 03:35:53,286 --> 03:35:54,588 ONLY VOICE, THEY JUST WANT THEIR 5399 03:35:54,588 --> 03:35:55,455 VOICE HEARD. 5400 03:35:55,455 --> 03:35:57,457 THOSE OF YOU FAMILIAR WITH 5401 03:35:57,457 --> 03:35:59,292 ANTHONY FAUCI, THIS CAME OUT 5402 03:35:59,292 --> 03:36:02,796 RECENTLY, HE STARTED OUT ONLY 5403 03:36:02,796 --> 03:36:04,864 RESPECTING RCTs DEALING WITH 5404 03:36:04,864 --> 03:36:07,367 THE AIDS EPIDEMIC AND STARTED 5405 03:36:07,367 --> 03:36:09,235 INTERACTING WITH THE ADVOCACY 5406 03:36:09,235 --> 03:36:10,437 GROUPS, AIDS ADVOCACY GROUPS, 5407 03:36:10,437 --> 03:36:12,405 THINGS STARTED CHANGING FOR THE 5408 03:36:12,405 --> 03:36:12,772 BETTER. 5409 03:36:12,772 --> 03:36:16,009 SO WE KNOW THESE EXAMPLES EXIST. 5410 03:36:16,009 --> 03:36:18,311 AS FAR AS BIAS IS CONCERNED THIS 5411 03:36:18,311 --> 03:36:21,281 IS AN EXAMPLE I THINK 5412 03:36:21,281 --> 03:36:22,282 REPRESENTATIVES BIAS. 5413 03:36:22,282 --> 03:36:23,783 YOU'RE SEEING HERE AN ESTIMATION 5414 03:36:23,783 --> 03:36:25,986 OF THE ANNUAL INCIDENCE OF 5415 03:36:25,986 --> 03:36:28,521 SPINAL CORD INJURY, CEREBRAL 5416 03:36:28,521 --> 03:36:32,892 PALSY, PEDIATRIC SEVERE TBI. 5417 03:36:32,892 --> 03:36:35,829 YOU'RE LOOKING AT 18,000 AND 5418 03:36:35,829 --> 03:36:38,131 20,000 GIVE OR TAKE BASED ON 5419 03:36:38,131 --> 03:36:38,498 ESTIMATES. 5420 03:36:38,498 --> 03:36:39,532 THAT'S ANNUAL INCIDENCE. 5421 03:36:39,532 --> 03:36:41,635 AND NOW WE'LL LOOK AT NICHD 5422 03:36:41,635 --> 03:36:44,571 FUNDING IN GREEN. 5423 03:36:44,571 --> 03:36:46,206 FOR SPINAL CORD INJURY, THE 5424 03:36:46,206 --> 03:36:49,175 NICHD FUNDING FROM NIH REPORTER 5425 03:36:49,175 --> 03:36:52,545 OVER ALL FISCAL YEARS, THAT WAS 5426 03:36:52,545 --> 03:36:54,581 $350 MILLION. 5427 03:36:54,581 --> 03:36:56,816 FOR CEREBRAL PALSY, A LITTLE BIT 5428 03:36:56,816 --> 03:36:58,685 OVER $450 MILLION. 5429 03:36:58,685 --> 03:37:01,187 PEDIATRIC SEVERE TBI IS ABOUT 5430 03:37:01,187 --> 03:37:03,390 $32 MILLION. 5431 03:37:03,390 --> 03:37:04,924 SO IT COSTS ABOUT $2 MILLION TO 5432 03:37:04,924 --> 03:37:09,429 TAKE CARE OF A KID WITH A SEVERE 5433 03:37:09,429 --> 03:37:10,497 TBI, WE'RE INVESTING $32 MILLION 5434 03:37:10,497 --> 03:37:13,333 FROM NICHD OVER ALL FISCAL 5435 03:37:13,333 --> 03:37:13,667 YEARS. 5436 03:37:13,667 --> 03:37:16,202 SO TO ME WHAT THIS REPRESENTS IS 5437 03:37:16,202 --> 03:37:17,370 A BIAS. 5438 03:37:17,370 --> 03:37:19,172 BUT WELL MAYBE IT'S BEYOND 5439 03:37:19,172 --> 03:37:19,572 NICHD. 5440 03:37:19,572 --> 03:37:21,141 MAYBE ALL NIH. 5441 03:37:21,141 --> 03:37:24,277 IF YOU LOOK ACROSS ALL OF NIH 5442 03:37:24,277 --> 03:37:31,651 IT'S MORE STARK, SPINAL CORD 5443 03:37:31,651 --> 03:37:32,919 INJURY $4 BILLION, THAT'S NOT 5444 03:37:32,919 --> 03:37:36,389 INCLUDING DoD AND V.A. 5445 03:37:36,389 --> 03:37:37,390 FUNDING. 5446 03:37:37,390 --> 03:37:39,459 CP $1.5 BILLION, PEDIATRIC 5447 03:37:39,459 --> 03:37:40,527 SEVERE TBI $68 MILLION. 5448 03:37:40,527 --> 03:37:42,729 TO ME THE REASON THIS REPRESENTS 5449 03:37:42,729 --> 03:37:44,931 BIAS IS BECAUSE IF YOU ARE A 5450 03:37:44,931 --> 03:37:46,466 STROKE RESEARCHER LIKE I WAS 5451 03:37:46,466 --> 03:37:49,869 THERE'S A GOOD CHANCE YOU'LL BE 5452 03:37:49,869 --> 03:37:51,304 A STROKE RESEARCHER THE REST OF 5453 03:37:51,304 --> 03:37:53,173 YOUR CAREER BECAUSE IT'S HARD TO 5454 03:37:53,173 --> 03:37:54,774 GET FUNDING. 5455 03:37:54,774 --> 03:37:56,342 ONCE YOU GET RAILROADED, THERE'S 5456 03:37:56,342 --> 03:37:58,578 GOING TO BE NO ATTENTION PAID TO 5457 03:37:58,578 --> 03:38:00,280 CERTAIN MALADIES. 5458 03:38:00,280 --> 03:38:01,948 I THINK THAT'S PROBLEMATIC. 5459 03:38:01,948 --> 03:38:03,550 MAYBE IT'S OUTSIDE NIH. 5460 03:38:03,550 --> 03:38:04,984 MAYBE IT'S FUNDED SOMEWHERE 5461 03:38:04,984 --> 03:38:05,185 ELSE. 5462 03:38:05,185 --> 03:38:07,721 IF IT WAS, THEN YOU WOULD SEE 5463 03:38:07,721 --> 03:38:09,589 THAT IN THE PUBLICATIONS. 5464 03:38:09,589 --> 03:38:11,424 SO, GOING OFF PubMed LOOKING 5465 03:38:11,424 --> 03:38:13,059 FOR CLINICAL TRIALS, TYPING IN 5466 03:38:13,059 --> 03:38:15,595 SEARCH TERMS, THE NUMBER OF 5467 03:38:15,595 --> 03:38:20,633 RCTs ON PEDIATRIC SEVERE TBI 5468 03:38:20,633 --> 03:38:21,801 IS NEGLIGIBLE. 5469 03:38:21,801 --> 03:38:24,671 WE HAD TO DEPEND ON THE REVIEW 5470 03:38:24,671 --> 03:38:31,678 FOR CP WHICH CLEARLY SHE DOES 5471 03:38:31,678 --> 03:38:35,482 NOT HAVE CP, SIMILAR BUT NOT CP. 5472 03:38:35,482 --> 03:38:37,383 IT'S PROBLEMATIC. 5473 03:38:37,383 --> 03:38:39,986 DEGREES OF TOKENISM ACCORDING TO 5474 03:38:39,986 --> 03:38:40,653 CITIZEN PARTICIPATION LADDER, 5475 03:38:40,653 --> 03:38:43,590 NOTHING TO DO WITH DISABILITIES 5476 03:38:43,590 --> 03:38:45,358 IN GENERAL, INFORM PEOPLE, THIS 5477 03:38:45,358 --> 03:38:48,995 IS LAY SUMMARIES, CONSULT WITH 5478 03:38:48,995 --> 03:38:51,064 PEOPLE, EXIT INTERVIEWS, 5479 03:38:51,064 --> 03:38:54,267 TOKENISM, PLACATE USING 5480 03:38:54,267 --> 03:38:56,002 HAND-PICKED WORDESE, NOTABLE 5481 03:38:56,002 --> 03:38:57,070 STRATEGIES. 5482 03:38:57,070 --> 03:38:58,338 WHAT I'M AFRAID OF IS THESE ARE 5483 03:38:58,338 --> 03:39:01,141 ALL GOOD THINGS TO DO, ALL 5484 03:39:01,141 --> 03:39:02,475 LEVELS OF INCLUSION, BUT WHAT 5485 03:39:02,475 --> 03:39:04,878 I'M AFRAID OF IS PEOPLE DON'T 5486 03:39:04,878 --> 03:39:07,580 SEE THIS HIGHER LEVEL, THE IDEA 5487 03:39:07,580 --> 03:39:09,249 OF POWER SHARING. 5488 03:39:09,249 --> 03:39:10,450 THESE PARTNERSHIPS. 5489 03:39:10,450 --> 03:39:12,952 THE IDEA EXISTS OUT THERE BUT I 5490 03:39:12,952 --> 03:39:14,921 DON'T KNOW IF THAT'S WHERE IT'S 5491 03:39:14,921 --> 03:39:15,288 HEADED. 5492 03:39:15,288 --> 03:39:17,991 I HOPE IT'S NOT JUST STOP HERE 5493 03:39:17,991 --> 03:39:21,161 AND PAT OURSELVES ON THE BACK. 5494 03:39:21,161 --> 03:39:22,829 IT BRINGS US TO THE PLAN TO 5495 03:39:22,829 --> 03:39:25,131 INCLUDE LIVED EXPERIENCE. 5496 03:39:25,131 --> 03:39:26,566 I TOOK THIS STRAIGHT OFF THE 5497 03:39:26,566 --> 03:39:26,966 WEBSITE. 5498 03:39:26,966 --> 03:39:29,269 THIS IS GREAT. 5499 03:39:29,269 --> 03:39:32,005 I'M REALLY HAPPY YOU GUYS ARE 5500 03:39:32,005 --> 03:39:33,039 DOING THIS. 5501 03:39:33,039 --> 03:39:35,008 I THINK INCLUDING FOCUS GROUPS 5502 03:39:35,008 --> 03:39:36,209 IS GOOD, IT'S NOT ENOUGH BUT 5503 03:39:36,209 --> 03:39:39,946 IT'S REALLY GOOD TO HAVE FOCUS 5504 03:39:39,946 --> 03:39:43,316 GROUPS TO HAVE WAYS TO FORM 5505 03:39:43,316 --> 03:39:44,250 SCIENTIFIC AIMS. 5506 03:39:44,250 --> 03:39:45,752 THE THIRD POINT, I DON'T KNOW. 5507 03:39:45,752 --> 03:39:47,387 MY OPINION BASIC SCIENCE COULD 5508 03:39:47,387 --> 03:39:49,255 BENEFIT FROM INCLUSION OF LIVED 5509 03:39:49,255 --> 03:39:50,557 EXPERIENCE FROM ACTUAL PEOPLE. 5510 03:39:50,557 --> 03:39:51,991 IF YOU'RE GOING TO SACRIFICE A 5511 03:39:51,991 --> 03:39:53,426 LOT OF ANIMALS DON'T YOU WANT 5512 03:39:53,426 --> 03:39:54,594 THE ETHICAL COVER OF KNOWING 5513 03:39:54,594 --> 03:39:56,462 THIS PROBLEM IS IMPORTANT ENOUGH 5514 03:39:56,462 --> 03:39:58,097 AND WORTH SACRIFICING A LOT OF 5515 03:39:58,097 --> 03:39:58,431 ANIMALS? 5516 03:39:58,431 --> 03:39:59,532 I WOULD THINK SO. 5517 03:39:59,532 --> 03:40:01,267 AND I REALLY LOVE IN THE BOTTOM 5518 03:40:01,267 --> 03:40:03,236 HOW THERE'S A MEMBER OF THE 5519 03:40:03,236 --> 03:40:04,370 RESEARCH TEAM THAT'S BEING 5520 03:40:04,370 --> 03:40:06,539 SUGGESTED, SO I THINK THIS IS 5521 03:40:06,539 --> 03:40:07,407 ALL GREAT STUFF. 5522 03:40:07,407 --> 03:40:10,043 MY CONCERN IS MORE ON THE META. 5523 03:40:10,043 --> 03:40:13,112 IT'S NOT CLEAR IF THIS IS 5524 03:40:13,112 --> 03:40:13,479 REQUIRED. 5525 03:40:13,479 --> 03:40:15,815 IT WASN'T CLEAR TO ME, EVEN IF 5526 03:40:15,815 --> 03:40:17,617 IT IS, HOW IT'S REVIEWED, 5527 03:40:17,617 --> 03:40:19,219 WHETHER LIKE PLANET OF THE APES 5528 03:40:19,219 --> 03:40:21,187 WE'RE JUST GOING TO CONVINCE 5529 03:40:21,187 --> 03:40:23,389 OTHER APES WE'RE REPRESENTING 5530 03:40:23,389 --> 03:40:23,790 HUMANS. 5531 03:40:23,790 --> 03:40:25,692 WHO IS ACTUALLY READING THIS, 5532 03:40:25,692 --> 03:40:27,193 WHO IS EVALUATING IF THIS IS 5533 03:40:27,193 --> 03:40:29,262 ACTUALLY A GOOD PLAN AND DO THEY 5534 03:40:29,262 --> 03:40:30,263 HAVE EXPERTISE, BACK TO THE 5535 03:40:30,263 --> 03:40:34,100 POINT OF THE TALK, EXPERTISE TO 5536 03:40:34,100 --> 03:40:35,535 EVALUATE THIS. 5537 03:40:35,535 --> 03:40:38,271 WHAT'S REALLY IMPORTANT, GETTING 5538 03:40:38,271 --> 03:40:40,440 ON TO THE SUGGESTIONS HERE IS 5539 03:40:40,440 --> 03:40:42,208 THAT THERE'S SOME FUNDAMENTAL 5540 03:40:42,208 --> 03:40:43,176 INCLUSION PRINCIPLES ADOPTED. 5541 03:40:43,176 --> 03:40:46,246 AND THE TOP ONE IS THE TITLE OF 5542 03:40:46,246 --> 03:40:48,114 THE TALK, LIVED EXPERIENCE AS 5543 03:40:48,114 --> 03:40:48,548 EXPERTISE. 5544 03:40:48,548 --> 03:40:49,849 I DIDN'T MAKE THIS UP. 5545 03:40:49,849 --> 03:40:51,718 NONE OF THIS STUFF I'M MAKING 5546 03:40:51,718 --> 03:40:52,252 UP. 5547 03:40:52,252 --> 03:40:53,586 THERE'S AN ORGANIZATION FOUNDED 5548 03:40:53,586 --> 03:40:56,990 BY A FORMER O.T., INCLUSIVE 5549 03:40:56,990 --> 03:40:58,057 CO-DESIGN CENTER IN CANADA. 5550 03:40:58,057 --> 03:41:01,327 THIS IS RIGHT ON THEIR WEBSITE. 5551 03:41:01,327 --> 03:41:06,499 THERE'S THE IDEA OF PRIORITIZING 5552 03:41:06,499 --> 03:41:07,800 EDGE CASES. 5553 03:41:07,800 --> 03:41:09,969 IN SCIENCE, A PERFECTLY GOOD WAY 5554 03:41:09,969 --> 03:41:11,404 TO DO SCIENCE, YOU START AS 5555 03:41:11,404 --> 03:41:15,008 SIMPLE AS POSSIBLE AND GET MORE 5556 03:41:15,008 --> 03:41:15,241 COMPLEX. 5557 03:41:15,241 --> 03:41:17,410 BUT WITH DESIGN, YOU KIND OF 5558 03:41:17,410 --> 03:41:19,045 WANT TO START COMPLEX AND WORK 5559 03:41:19,045 --> 03:41:21,881 YOUR WAY IN BECAUSE THAT WAY YOU 5560 03:41:21,881 --> 03:41:24,517 MAKE SURE YOU HAVE GENERALIZABLE 5561 03:41:24,517 --> 03:41:24,784 SOLUTIONS. 5562 03:41:24,784 --> 03:41:26,286 BOTH STRATEGIES NEED TO BE 5563 03:41:26,286 --> 03:41:26,719 VALUED. 5564 03:41:26,719 --> 03:41:29,555 I'M NOT SURE THAT'S THE CASE. 5565 03:41:29,555 --> 03:41:33,092 THERE'S THE IDEA OF A 5566 03:41:33,092 --> 03:41:35,228 ACCOUNTABILITY AND SHARED 5567 03:41:35,228 --> 03:41:35,561 LEADERSHIP. 5568 03:41:35,561 --> 03:41:36,796 PEOPLE WITH DISABILITIES, LIVED 5569 03:41:36,796 --> 03:41:39,866 EXPERIENCE, MANY WANT TO SAY HOW 5570 03:41:39,866 --> 03:41:42,702 MONEY IS SPENT IN THEIR NAMES, A 5571 03:41:42,702 --> 03:41:45,004 REASONABLE THING TO ASK. 5572 03:41:45,004 --> 03:41:45,972 THERE'S RECIPROCAL 5573 03:41:45,972 --> 03:41:50,343 RELATIONSHIPS, THIS COMES FROM 5574 03:41:50,343 --> 03:41:51,577 PCORI, PATIENT CENTERED OUTCOMES 5575 03:41:51,577 --> 03:41:52,445 RESEARCH INSTITUTE. 5576 03:41:52,445 --> 03:41:53,846 I'VE HAD DISCUSSIONS WITH 5577 03:41:53,846 --> 03:41:56,282 PEOPLE, WELL, YOU SHOULD APPLY 5578 03:41:56,282 --> 03:41:58,117 TO PCORI OR NIDILRR OR THESE 5579 03:41:58,117 --> 03:41:59,652 ORGANIZATIONS THAT SEEM TO BE A 5580 03:41:59,652 --> 03:42:01,187 LOT MORE INVOLVED WITH PEOPLE 5581 03:42:01,187 --> 03:42:02,155 WITH LIVED EXPERIENCE. 5582 03:42:02,155 --> 03:42:04,891 I THINK THAT'S GREAT, THE BUDGET 5583 03:42:04,891 --> 03:42:06,292 IS ALSO .5% OF NIH. 5584 03:42:06,292 --> 03:42:08,728 THAT CAN'T BE HOW MUCH WE VALUE 5585 03:42:08,728 --> 03:42:10,596 LIVED EXPERIENCE. 5586 03:42:10,596 --> 03:42:12,665 THE IDEA OF RECIPROCAL 5587 03:42:12,665 --> 03:42:14,968 RELATIONSHIPS IS FIGURING OUT 5588 03:42:14,968 --> 03:42:17,136 EACH OTHER'S ROLES. 5589 03:42:17,136 --> 03:42:18,204 CO-LEARNING IS REALLY IMPORTANT. 5590 03:42:18,204 --> 03:42:20,740 I THINK THERE NEEDS TO BE SOME 5591 03:42:20,740 --> 03:42:22,809 SORT OF STRUCTURE FOR 5592 03:42:22,809 --> 03:42:24,110 CO-LEARNING. 5593 03:42:24,110 --> 03:42:26,746 I MENTIONED KIM ANDERSON, MY 5594 03:42:26,746 --> 03:42:28,948 COLLEAGUE, BEFORE, WHO HAS HER 5595 03:42:28,948 --> 03:42:29,916 ORGANIZATION, NORTH AMERICAN 5596 03:42:29,916 --> 03:42:31,985 SPINAL CORD INSTITUTE. 5597 03:42:31,985 --> 03:42:33,853 THEY HAVE WORKSHOPS SET UP TO 5598 03:42:33,853 --> 03:42:35,188 TEACH PEOPLE WITH LIVED 5599 03:42:35,188 --> 03:42:37,256 EXPERIENCE WITH SCIENCES AND HOW 5600 03:42:37,256 --> 03:42:38,658 TO TEACH SCIENTISTS WITH LIVED 5601 03:42:38,658 --> 03:42:40,093 EXPERIENCES, I THINK THAT'S 5602 03:42:40,093 --> 03:42:40,560 GREAT. 5603 03:42:40,560 --> 03:42:41,995 BUT THE MOST IMPORTANT THING 5604 03:42:41,995 --> 03:42:43,396 CO-LEARNING IS NOT SO MUCH 5605 03:42:43,396 --> 03:42:44,364 TAKING A CLASS, IT'S SPENDING 5606 03:42:44,364 --> 03:42:45,598 TIME WITH THE PEOPLE AND 5607 03:42:45,598 --> 03:42:48,234 LEARNING TO RESPECT THEM AS A 5608 03:42:48,234 --> 03:42:48,534 PEER. 5609 03:42:48,534 --> 03:42:51,804 NOT TALKING DOWN TO THEM, BOTH 5610 03:42:51,804 --> 03:42:52,238 WITH MUTUAL RESPECT. 5611 03:42:52,238 --> 03:42:54,440 I THINK YOU'RE IN GOOD SHAPE FOR 5612 03:42:54,440 --> 03:42:55,875 PARTNERSHIPS, THE LAST PART, 5613 03:42:55,875 --> 03:42:57,410 ACTUALLY ACTIVELY PARTNERING 5614 03:42:57,410 --> 03:42:58,811 WITH PEOPLE AND PAYING THEM FOR 5615 03:42:58,811 --> 03:43:05,284 WHAT THEY DO. 5616 03:43:05,284 --> 03:43:11,624 I THINK THERE NEEDS TO BE A 5617 03:43:11,624 --> 03:43:13,192 FORMALIZED WAY OF DOING THIS. 5618 03:43:13,192 --> 03:43:16,129 MY FEAR IS THIS BECOMES 5619 03:43:16,129 --> 03:43:16,729 PERFORMATIVE. 5620 03:43:16,729 --> 03:43:18,197 WHAT CAN NIH DO? 5621 03:43:18,197 --> 03:43:21,601 I WOULD LOVE TO HAVE TRAINEES 5622 03:43:21,601 --> 03:43:23,569 COME TO MY HOUSE AND TAKE CARE 5623 03:43:23,569 --> 03:43:24,103 OF MY DAUGHTER. 5624 03:43:24,103 --> 03:43:25,738 A LOT OF PEOPLE WITH 5625 03:43:25,738 --> 03:43:27,273 DISABILITIES WOULD LOVE TO HAVE 5626 03:43:27,273 --> 03:43:28,608 PEOPLE HELP OUT A LITTLE SO THEY 5627 03:43:28,608 --> 03:43:30,243 CAN LEARN WHAT THEIR PROBLEMS 5628 03:43:30,243 --> 03:43:34,414 ARE FROM A FIRST PERSON 5629 03:43:34,414 --> 03:43:34,814 PERSPECTIVE. 5630 03:43:34,814 --> 03:43:35,915 DO THINK IT'S IMPORTANT IF WE'RE 5631 03:43:35,915 --> 03:43:37,583 GOING TO INCLUDE PEOPLE IN 5632 03:43:37,583 --> 03:43:39,318 PARTNERSHIPS THEY NEED SOME 5633 03:43:39,318 --> 03:43:40,620 TRAINING IN SCIENCE. 5634 03:43:40,620 --> 03:43:41,954 YOU CAN'T JUST PICK ANYONE OFF 5635 03:43:41,954 --> 03:43:44,123 THE STREET AND HAVE THEM MAKE 5636 03:43:44,123 --> 03:43:45,024 MEANINGFUL CONTRIBUTIONS. 5637 03:43:45,024 --> 03:43:48,394 THEY DO NEED TO BE -- HAVE SOME 5638 03:43:48,394 --> 03:43:48,895 ABILITIES. 5639 03:43:48,895 --> 03:43:51,030 A LOT HAVE INCREDIBLE ABILITIES 5640 03:43:51,030 --> 03:43:52,899 AND ARE SMART PEOPLE, IN SOME 5641 03:43:52,899 --> 03:43:54,000 CASES SMARTER THAN ME. 5642 03:43:54,000 --> 03:43:56,169 I KNOW THERE'S THE TALENT THERE. 5643 03:43:56,169 --> 03:43:57,603 WE'RE JUST NOT REALLY 5644 03:43:57,603 --> 03:44:03,709 CULTIVATING IT, NOT FARMING IT 5645 03:44:03,709 --> 03:44:03,976 PROPERLY. 5646 03:44:03,976 --> 03:44:05,978 I WOULD LOVE TO SEE THAT. 5647 03:44:05,978 --> 03:44:08,014 AS FAR AS INCLUSION I KNOW THAT 5648 03:44:08,014 --> 03:44:09,115 PEOPLE WITH LIVED EXPERIENCE, 5649 03:44:09,115 --> 03:44:10,983 THEY ARE INVITED TO CONFERENCES, 5650 03:44:10,983 --> 03:44:12,852 PUT UP THERE ON A PANEL, I DON'T 5651 03:44:12,852 --> 03:44:14,687 KNOW IF THEY ARE INVOLVED IN 5652 03:44:14,687 --> 03:44:15,488 PLANNING OUT THE CONFERENCE OR 5653 03:44:15,488 --> 03:44:18,558 HOW MUCH THEY ARE INVOLVED IN 5654 03:44:18,558 --> 03:44:21,727 MAKING SURE THE CONFERENCE IS 5655 03:44:21,727 --> 03:44:27,533 RELEVANT TO THEM. 5656 03:44:27,533 --> 03:44:29,168 WE TALKED ABOUT INCLUSION, 5657 03:44:29,168 --> 03:44:30,303 SCIENTIST REVIEW, YOU'RE 5658 03:44:30,303 --> 03:44:32,772 FAMILIAR WITH THAT CONCEPT. 5659 03:44:32,772 --> 03:44:33,272 FUNDING AGENCIES, SENIOR 5660 03:44:33,272 --> 03:44:35,508 POSITIONS, I DON'T KNOW HOW MANY 5661 03:44:35,508 --> 03:44:36,109 PEOPLE IN FUNDING AGENCIES, I 5662 03:44:36,109 --> 03:44:37,810 DON'T KNOW WHAT THEY ARE MADE OF 5663 03:44:37,810 --> 03:44:39,679 BUT MY IMPRESSION IS THERE'S 5664 03:44:39,679 --> 03:44:45,017 REALLY NOT A SUFFICIENT GROUP. 5665 03:44:45,017 --> 03:44:46,018 EMBRACING COMPLEXITY, THE IDEA 5666 03:44:46,018 --> 03:44:48,654 THAT WE DESIGN FOR THE CENTER 5667 03:44:48,654 --> 03:44:49,188 CIRCLE. 5668 03:44:49,188 --> 03:44:50,823 WE SHOULD DESIGN FOR THE EDGE 5669 03:44:50,823 --> 03:44:53,559 CASES AND CAN WORK OUR WAY IN. 5670 03:44:53,559 --> 03:44:55,862 THAT'S A VALID APPROACH TO TAKE 5671 03:44:55,862 --> 03:44:57,296 WITH COMPLEX CASES WHERE IF WE 5672 03:44:57,296 --> 03:44:59,899 START SIMPLE AND TRY TO GET MORE 5673 03:44:59,899 --> 03:45:02,301 COMPLEX WE'RE NEVER GOING TO GET 5674 03:45:02,301 --> 03:45:02,635 THERE. 5675 03:45:02,635 --> 03:45:03,302 FINALLY OBJECTIVE INFORMATION, I 5676 03:45:03,302 --> 03:45:05,371 TALKED ABOUT THE PROBLEMS OF 5677 03:45:05,371 --> 03:45:06,139 MEDICAL DECISION MAKING. 5678 03:45:06,139 --> 03:45:11,644 I GOT TO TELL YOU, IT FEELS LIKE 5679 03:45:11,644 --> 03:45:14,680 THE WILD WEST. 5680 03:45:14,680 --> 03:45:17,183 IT'S HARD TO SORT OUT EVEN WITH 5681 03:45:17,183 --> 03:45:17,950 SCIENTIFIC EXPERTISE, IT'S HARD 5682 03:45:17,950 --> 03:45:19,819 TO SORT OUT WHAT WE SHOULD DO 5683 03:45:19,819 --> 03:45:20,920 AND SHOULDN'T DO BECAUSE THERE'S 5684 03:45:20,920 --> 03:45:23,322 JUST A LACK OF EVIDENCE. 5685 03:45:23,322 --> 03:45:25,391 EVEN BEYOND EVIDENCE YOU'RE 5686 03:45:25,391 --> 03:45:26,826 LOOKING FOR MECHANISMS, SHOULD 5687 03:45:26,826 --> 03:45:28,694 THIS HELP, NOT HELP, APPROACH 5688 03:45:28,694 --> 03:45:32,865 CLINICIANS, THEY ARE LAX TO GIVE 5689 03:45:32,865 --> 03:45:33,866 YOU THEIR OPINION. 5690 03:45:33,866 --> 03:45:35,468 IT'S HARD TO TAKE THE TIME TO 5691 03:45:35,468 --> 03:45:37,136 LOOK IT UP THEMSELVES SO IT'S 5692 03:45:37,136 --> 03:45:39,272 REALLY HARD TO EMPOWER US TO 5693 03:45:39,272 --> 03:45:41,741 MAKE DECISIONS WITHOUT ALL THE 5694 03:45:41,741 --> 03:45:43,376 KNOWING THE SAME INFORMATION. 5695 03:45:43,376 --> 03:45:45,545 FEELS LIKE EVERY PARENT KNOWS 5696 03:45:45,545 --> 03:45:47,213 SOMETHING DIFFERENT AND THAT'S 5697 03:45:47,213 --> 03:45:47,947 PROBLEMATIC. 5698 03:45:47,947 --> 03:45:52,351 I HOPE NIH CAN HELP REMOVE THE 5699 03:45:52,351 --> 03:45:53,319 DEPENDENCE ON SPONSORSHIPS LIKE 5700 03:45:53,319 --> 03:45:55,188 I SHOWED AT THE RESOURCE FAIR SO 5701 03:45:55,188 --> 03:45:57,823 WE CAN GET REAL OBJECTIVE 5702 03:45:57,823 --> 03:46:02,195 INFORMATION THAT'S UNBIASED AS 5703 03:46:02,195 --> 03:46:02,495 POSSIBLE. 5704 03:46:02,495 --> 03:46:04,030 JUST TO RECAP, COMPLEX MEDICAL 5705 03:46:04,030 --> 03:46:05,364 NEEDS ARE CHALLENGING. 5706 03:46:05,364 --> 03:46:07,533 I HOPE I ILLUSTRATED THAT. 5707 03:46:07,533 --> 03:46:09,168 I FLEW THROUGH THAT. 5708 03:46:09,168 --> 03:46:10,603 MEDICAL DECISION MAKING IS 5709 03:46:10,603 --> 03:46:12,371 REALLY AGONIZING FOR THE REASONS 5710 03:46:12,371 --> 03:46:13,105 I MENTIONED. 5711 03:46:13,105 --> 03:46:14,774 WE DON'T FEEL WE HAVE ENOUGH 5712 03:46:14,774 --> 03:46:16,175 INFORMATION TO MAKE GOOD 5713 03:46:16,175 --> 03:46:16,442 DECISIONS. 5714 03:46:16,442 --> 03:46:18,044 FEELS LIKE THE WILD WEST WITH 5715 03:46:18,044 --> 03:46:20,112 EVERYONE THROWING THINGS AT US. 5716 03:46:20,112 --> 03:46:25,184 THERE DOESN'T SEEM TO EVEN BE A 5717 03:46:25,184 --> 03:46:29,222 REPOSITORY OF DEVICES OUT THERE, 5718 03:46:29,222 --> 03:46:33,159 A CENTRAL HUB OF DEVICES, 5719 03:46:33,159 --> 03:46:34,193 THERAPIES, TO MAKE 5720 03:46:34,193 --> 03:46:35,761 APPLES-TO-APPLES COMPARISONS. 5721 03:46:35,761 --> 03:46:37,330 LACK OF INCLUSION THAT'S BEEN 5722 03:46:37,330 --> 03:46:38,798 GOING ON FOR DECADES RESULTS IN 5723 03:46:38,798 --> 03:46:40,499 LACK OF TRUST IN THE SYSTEM. 5724 03:46:40,499 --> 03:46:42,735 YOU'LL FEEL LACK OF TRUST LIKE 5725 03:46:42,735 --> 03:46:46,239 THE EXAMPLES I GAVE. 5726 03:46:46,239 --> 03:46:47,640 PEOPLE WORRY INCLUSION WILL SLOW 5727 03:46:47,640 --> 03:46:48,407 SCIENCE DOWN. 5728 03:46:48,407 --> 03:46:50,176 I'VE HEARD THAT IN PRIVATE 5729 03:46:50,176 --> 03:46:51,043 CONVERSATIONS BUT IT DOESN'T 5730 03:46:51,043 --> 03:46:52,345 MATTER IF IT'S BEING SLOWED DOWN 5731 03:46:52,345 --> 03:46:57,817 FANTASTIC GOING IN THE WRONG 5732 03:46:57,817 --> 03:46:58,217 DIRECTION. 5733 03:46:58,217 --> 03:47:00,019 INCLUSION WILL RESULT IN EQUITY 5734 03:47:00,019 --> 03:47:01,420 LIKE THE INEQUITY WITH THE 5735 03:47:01,420 --> 03:47:04,156 RESEARCH GOING TOWARDS THE LACK 5736 03:47:04,156 --> 03:47:06,692 OF RESEARCH TOWARD PEDIATRIC 5737 03:47:06,692 --> 03:47:07,126 TBI. 5738 03:47:07,126 --> 03:47:09,662 ULTIMATELY MY OPINION, I BELIEVE 5739 03:47:09,662 --> 03:47:11,497 NIH NEEDS GUIDING PRINCIPLES. 5740 03:47:11,497 --> 03:47:13,566 IT NEEDS TO UNDERSTAND WHAT'S 5741 03:47:13,566 --> 03:47:15,668 INFORMING THE POLICY. 5742 03:47:15,668 --> 03:47:18,838 AND THEN ACTION ITEMS TO PURSUE. 5743 03:47:18,838 --> 03:47:21,674 I GAVE OUT SOME IDEAS BUT 5744 03:47:21,674 --> 03:47:23,409 CLEARLY THERE'S BETTER IDEAS OUT 5745 03:47:23,409 --> 03:47:23,643 THERE. 5746 03:47:23,643 --> 03:47:25,077 THAT'S ALL I'VE GOT. 5747 03:47:25,077 --> 03:47:27,246 WE'VE GOT 15 MINUTES FOR 5748 03:47:27,246 --> 03:47:29,882 DISCUSSION SO I'M HAPPY TO HAVE 5749 03:47:29,882 --> 03:47:36,222 SOME TIME TO TAKE ANY QUESTIONS. 5750 03:47:36,222 --> 03:47:43,162 >> JAMES, THANK YOU SO VERY 5751 03:47:43,162 --> 03:47:43,596 MUCH. 5752 03:47:43,596 --> 03:47:43,796 WADE? 5753 03:47:43,796 --> 03:47:46,165 >> THANKS SO MUCH. 5754 03:47:46,165 --> 03:47:48,901 YEAH, JAMES, I WANT TO THANK YOU 5755 03:47:48,901 --> 03:47:50,903 PERSONALLY FOR THIS AMAZING TALK 5756 03:47:50,903 --> 03:47:51,237 TODAY. 5757 03:47:51,237 --> 03:47:54,073 WE DIDN'T REALLY GO THROUGH THIS 5758 03:47:54,073 --> 03:47:55,174 IN THE DISCLOSURE THIS MORNING 5759 03:47:55,174 --> 03:47:59,211 BUT AS I MENTIONED I'M THE 5760 03:47:59,211 --> 03:48:00,680 DIVISION CLEAVE FOR CEREBRAL 5761 03:48:00,680 --> 03:48:02,915 PALSY, WE SEE A LOT OF PATIENTS 5762 03:48:02,915 --> 03:48:04,116 WITH TRAUMATIC BRAIN INJURY IN 5763 03:48:04,116 --> 03:48:06,619 OUR GROUP AND I'M THE DAD OF TWO 5764 03:48:06,619 --> 03:48:10,790 ADULTS WITH CP WHO ARE 26, SO I 5765 03:48:10,790 --> 03:48:15,494 JUST THINK YOU ELOQUENTLY 5766 03:48:15,494 --> 03:48:16,696 EXPRESSED THAT CHALLENGE AND 5767 03:48:16,696 --> 03:48:22,635 VAST GAP OF EVIDENCE AND 5768 03:48:22,635 --> 03:48:23,502 PARENTAL HOPE WHICH DRIVES 5769 03:48:23,502 --> 03:48:24,704 DECISION MAKING FOR SO MANY 5770 03:48:24,704 --> 03:48:24,937 PARENTS. 5771 03:48:24,937 --> 03:48:27,673 IT'S ONE OF OUR NEW RESEARCH 5772 03:48:27,673 --> 03:48:31,911 ARMS TO DIG INTO SOME OF THOSE 5773 03:48:31,911 --> 03:48:33,579 QUESTIONS ABOUT WHAT DRIVES 5774 03:48:33,579 --> 03:48:35,781 PARENT DECISION MAKING AND TO 5775 03:48:35,781 --> 03:48:38,384 HELP DEFINE THAT GAP. 5776 03:48:38,384 --> 03:48:40,886 THE EXAMPLES YOU GAVE, PERTINENT 5777 03:48:40,886 --> 03:48:44,256 IN OUR SPACE OF HYPERBARIC 5778 03:48:44,256 --> 03:48:44,957 OXYGEN. 5779 03:48:44,957 --> 03:48:47,460 AGAIN, I WANT TO THANK YOU FOR 5780 03:48:47,460 --> 03:48:47,660 THAT. 5781 03:48:47,660 --> 03:48:48,661 YOU DID IT MUCH BETTER THAN I 5782 03:48:48,661 --> 03:48:50,296 COULD WHEN I TRY TO TALK ABOUT 5783 03:48:50,296 --> 03:48:52,698 MY KIDS, I TEND TO GET EMOTIONAL 5784 03:48:52,698 --> 03:48:54,900 IN THESE SETTINGS SO I 5785 03:48:54,900 --> 03:48:56,102 CONGRATULATE YOU ON THAT. 5786 03:48:56,102 --> 03:48:59,271 MY QUESTION TO YOU IS HOW DO WE 5787 03:48:59,271 --> 03:49:03,209 GET OUR FAMILIES AND PARENTS AND 5788 03:49:03,209 --> 03:49:05,177 PERSONS WITH LIVED EXPERIENCE TO 5789 03:49:05,177 --> 03:49:09,348 THAT POWER LEVEL OF HELPING US 5790 03:49:09,348 --> 03:49:12,952 DESIGN THOSE RESEARCH STUDIES 5791 03:49:12,952 --> 03:49:15,020 AND REALLY GET TO WHERE WE GOING 5792 03:49:15,020 --> 03:49:17,089 TO STAKEHOLDERS, THE TYPE OF 5793 03:49:17,089 --> 03:49:19,191 STUDIES WE'RE PROPOSING TO NIH 5794 03:49:19,191 --> 03:49:22,928 AND PCORI AND THINGS LIKE THAT 5795 03:49:22,928 --> 03:49:23,929 BECAUSE THERE'S THAT DISCONNECT 5796 03:49:23,929 --> 03:49:26,966 RIGHT THERE FOR THAT AND NOT 5797 03:49:26,966 --> 03:49:28,834 JUST HAVING TOKEN GROUPS 5798 03:49:28,834 --> 03:49:30,903 PERFORMATIVE, I LIVE THAT THAT'S 5799 03:49:30,903 --> 03:49:41,447 AN EMPHASIS BUT HOW DO WE DO IT 5800 03:49:41,680 --> 03:49:42,848 FOR HYPERBARIC OXYGEN STUDY. 5801 03:49:42,848 --> 03:49:44,016 >> THANKS, WADE. 5802 03:49:44,016 --> 03:49:47,653 I APPRECIATE THE KIND WORDS. 5803 03:49:47,653 --> 03:49:49,655 LET ME START, YOU'RE ASKING AN 5804 03:49:49,655 --> 03:49:50,923 IMPLEMENTATION QUESTION HOW TO 5805 03:49:50,923 --> 03:49:52,024 DO THIS. 5806 03:49:52,024 --> 03:49:53,993 AGAIN, I WANT TO REITERATE, I'M 5807 03:49:53,993 --> 03:49:55,294 NEW TO THIS. 5808 03:49:55,294 --> 03:50:02,301 I'M NOT AN EXPERT IN THIS 5809 03:50:02,301 --> 03:50:02,902 ASPECT. 5810 03:50:02,902 --> 03:50:08,641 I CAN SAY I'M AWARE OF 5811 03:50:08,641 --> 03:50:09,008 RESOURCES. 5812 03:50:09,008 --> 03:50:11,844 FOR EXAMPLE KEN CHILD HAS A 5813 03:50:11,844 --> 03:50:12,912 PROGRAM, YOU'RE SHAKING YOUR 5814 03:50:12,912 --> 03:50:15,648 HEAD, MAYBE YOU KNOW OF KEN 5815 03:50:15,648 --> 03:50:16,215 CHILD'S PROGRAM. 5816 03:50:16,215 --> 03:50:19,518 SO THIS IS TO TRAIN THEM TO GET 5817 03:50:19,518 --> 03:50:21,253 READY AND THAT'S GREAT. 5818 03:50:21,253 --> 03:50:26,425 PAYING PEOPLE FOR TIME WOULD BE 5819 03:50:26,425 --> 03:50:26,859 HELPFUL. 5820 03:50:26,859 --> 03:50:28,294 AND I THINK IT'S TRICKY BECAUSE, 5821 03:50:28,294 --> 03:50:29,261 AGAIN, YOU CAN'T GET ANYONE OFF 5822 03:50:29,261 --> 03:50:30,262 THE STREET. 5823 03:50:30,262 --> 03:50:32,331 YOU HAVE TO GET THE RIGHT PEOPLE 5824 03:50:32,331 --> 03:50:34,200 WHO ARE MOTIVATED AND WANT TO 5825 03:50:34,200 --> 03:50:34,400 HELP. 5826 03:50:34,400 --> 03:50:36,902 BUT I THINK IT CAN START WITH 5827 03:50:36,902 --> 03:50:38,003 THAT AND MAYBE SELF-SELECT FROM 5828 03:50:38,003 --> 03:50:38,671 THERE. 5829 03:50:38,671 --> 03:50:40,840 IT'S ONE OF THE TRICKIEST 5830 03:50:40,840 --> 03:50:41,507 PROBLEMS, I AGREE. 5831 03:50:41,507 --> 03:50:43,709 I THINK IF WE HAVE AN 5832 03:50:43,709 --> 03:50:44,910 INFRASTRUCTURE AND GET PEOPLE 5833 03:50:44,910 --> 03:50:47,546 INVOLVED MAYBE DIP THEIR TOES IN 5834 03:50:47,546 --> 03:50:48,714 THE WARD AS CONSULTANTS THAT'S 5835 03:50:48,714 --> 03:50:52,451 ALREADY PLANNED FOR THE LIVED 5836 03:50:52,451 --> 03:50:53,752 EXPERIENCE INCLUSION, NCMRR HAS 5837 03:50:53,752 --> 03:50:54,987 ADOPTED, IT'S A GREAT START. 5838 03:50:54,987 --> 03:50:58,791 I WOULD LIKE TO TO SEE IT EVOLVE 5839 03:50:58,791 --> 03:50:59,692 INTO PARTNERSHIPS, TRUE 5840 03:50:59,692 --> 03:51:00,025 PARTNERSHIPS. 5841 03:51:00,025 --> 03:51:09,168 >> THANK YOU. 5842 03:51:09,168 --> 03:51:13,339 >> JAMES, I WANT TO THANK YOU 5843 03:51:13,339 --> 03:51:14,306 FOR BRINGING IT. 5844 03:51:14,306 --> 03:51:16,976 AN ONGOING MESSAGE THE ACADEMIC 5845 03:51:16,976 --> 03:51:19,144 COMMUNITY HAS TO HEAR, TO NOT 5846 03:51:19,144 --> 03:51:20,880 TAKE OURSELVES SO SERIOUSLY WE 5847 03:51:20,880 --> 03:51:25,251 FORGET WHY WE'RE DOING THIS AND, 5848 03:51:25,251 --> 03:51:27,920 YOU KNOW, IT'S A THEME THAT I 5849 03:51:27,920 --> 03:51:30,422 HOPE THAT OUR CENTER, PART OF 5850 03:51:30,422 --> 03:51:32,725 OUR EXISTENCE AT NIH TO BRING 5851 03:51:32,725 --> 03:51:34,693 THE MESSAGE TO THE BROADER NIH 5852 03:51:34,693 --> 03:51:36,662 TO NOT FORGET WHY WE DO RESEARCH 5853 03:51:36,662 --> 03:51:38,898 AND GET HUNG UP A ACADEMIC 5854 03:51:38,898 --> 03:51:40,699 EXCELLENCE OR THINGS THAT LOOKS 5855 03:51:40,699 --> 03:51:45,170 GOOD IN JOURNALS. 5856 03:51:45,170 --> 03:51:48,374 IT'S SOMETHING, EVEN FROM THE 5857 03:51:48,374 --> 03:51:49,575 DISCUSSION OF RECENTERING PEER 5858 03:51:49,575 --> 03:51:51,210 REVIEW, TO THE SESSION COMING UP 5859 03:51:51,210 --> 03:52:01,620 AFTERWARDS TRYING TO TALK TO THE 5860 03:52:01,620 --> 03:52:02,922 BROADER RESEARCH COMMUNITY. 5861 03:52:02,922 --> 03:52:05,057 I APPRECIATE YOUR HONESTY 5862 03:52:05,057 --> 03:52:06,358 BRINGING IT FORTH WITH US. 5863 03:52:06,358 --> 03:52:09,194 I WANTED TO LAY THAT OUT THERE. 5864 03:52:09,194 --> 03:52:10,963 WE APPRECIATE IT AND SUPPORT 5865 03:52:10,963 --> 03:52:11,363 YOU. 5866 03:52:11,363 --> 03:52:11,597 THANKS. 5867 03:52:11,597 --> 03:52:12,431 THANKS A LOT. 5868 03:52:12,431 --> 03:52:13,666 >> I APPRECIATE THAT, RALPH. 5869 03:52:13,666 --> 03:52:18,737 THANK YOU. 5870 03:52:18,737 --> 03:52:19,204 >> MICHELLE? 5871 03:52:19,204 --> 03:52:20,139 >> HI, JAMES. 5872 03:52:20,139 --> 03:52:21,440 GOOD TO SEE YOU. 5873 03:52:21,440 --> 03:52:24,543 HAVEN'T SEEN YOU IN A WHILE. 5874 03:52:24,543 --> 03:52:24,910 >> HI. 5875 03:52:24,910 --> 03:52:27,246 >> THANK YOU FOR THAT 5876 03:52:27,246 --> 03:52:28,681 PRESENTATION. 5877 03:52:28,681 --> 03:52:30,382 IT WAS ABSOLUTELY WONDERFUL. 5878 03:52:30,382 --> 03:52:34,353 MADE ME THINK A LITTLE BIT ABOUT 5879 03:52:34,353 --> 03:52:37,423 HOW DIFFICULT IT IS TO GET TWO 5880 03:52:37,423 --> 03:52:38,958 PERSONS WITH LIVED EXPERIENCES. 5881 03:52:38,958 --> 03:52:42,394 I WONDER IF YOU HAVE SUGGESTIONS 5882 03:52:42,394 --> 03:52:44,630 MAYBE WE START SMALL EACH, YOU 5883 03:52:44,630 --> 03:52:46,265 KNOW, PERSON WITHIN THIS FIELD, 5884 03:52:46,265 --> 03:52:50,336 AND WHAT WOULD YOU SUGGEST AS 5885 03:52:50,336 --> 03:52:52,738 KIND OF LIKE MAYBE SOME CONCRETE 5886 03:52:52,738 --> 03:52:54,807 WAYS OF DOING IT? 5887 03:52:54,807 --> 03:52:59,311 IN MY WORK RIGHT NOW I HAVE 5888 03:52:59,311 --> 03:53:01,614 STROKE SURVIVORS THAT I CALL 5889 03:53:01,614 --> 03:53:04,116 EVERY TIME I'M PUTTING OUT 5890 03:53:04,116 --> 03:53:04,416 SOMETHING. 5891 03:53:04,416 --> 03:53:07,086 I PAY THEM TO COME IN AND TEST 5892 03:53:07,086 --> 03:53:10,155 OUT SOMETHING TO TRY OUT, A 5893 03:53:10,155 --> 03:53:12,224 SERIOUS GAIN, TRY OUT OUR 5894 03:53:12,224 --> 03:53:13,325 EQUIPMENT, BUT STILL ONLY FOUR 5895 03:53:13,325 --> 03:53:15,828 OR FIVE PEOPLE, YOU KNOW? 5896 03:53:15,828 --> 03:53:18,030 I'M WONDERING IS THERE SOMETHING 5897 03:53:18,030 --> 03:53:21,000 TANGIBLE WE CAN DO TO MAYBE EVEN 5898 03:53:21,000 --> 03:53:24,269 GET AT, YOU KNOW, YOU SAID TURN 5899 03:53:24,269 --> 03:53:25,204 ON, TURN IT. 5900 03:53:25,204 --> 03:53:25,804 >> TURN TWO. 5901 03:53:25,804 --> 03:53:26,805 >> TURN TWO. 5902 03:53:26,805 --> 03:53:29,308 SO TO EVEN GET TO THE PEOPLE WHO 5903 03:53:29,308 --> 03:53:31,510 ARE DIRECTING TURN TWO, TO GIVE 5904 03:53:31,510 --> 03:53:34,446 THEM THE INFORMATION THAT WE 5905 03:53:34,446 --> 03:53:36,081 KNOW SO THAT MAYBE THEIR 5906 03:53:36,081 --> 03:53:37,082 KNOWLEDGE, WHATEVER IS THE 5907 03:53:37,082 --> 03:53:40,152 CUTTING EDGE SCIENCE MIGHT BE 5908 03:53:40,152 --> 03:53:41,453 CLOSER TOGETHER, ANDs IS THERE 5909 03:53:41,453 --> 03:53:44,323 ALREADY A WAY TO DO THAT, THAT 5910 03:53:44,323 --> 03:53:46,291 WHEN WE WRITE UP DISSEMINATION 5911 03:53:46,291 --> 03:53:48,160 AND PUT OUT DISSEMINATION WE 5912 03:53:48,160 --> 03:53:50,429 DON'T REALLY INCLUDE THAT AS A 5913 03:53:50,429 --> 03:53:52,431 WAY OF DISSEMINATING OUR 5914 03:53:52,431 --> 03:53:54,400 INFORMATION SO MAYBE IS THERE 5915 03:53:54,400 --> 03:53:57,002 SOMEPLACE WE SHOULD BE ADOPTING 5916 03:53:57,002 --> 03:53:58,737 AS HERE, YOU MUST DISSEMINATE IN 5917 03:53:58,737 --> 03:54:00,072 SUCH AND SUCH A WAY, SOME THINGS 5918 03:54:00,072 --> 03:54:04,243 THAT HAVE BEEN GOING IN MY HEAD 5919 03:54:04,243 --> 03:54:05,210 SINCE HEARING YOUR TALK. 5920 03:54:05,210 --> 03:54:07,079 I THINK YOU'RE ON THE RIGHT 5921 03:54:07,079 --> 03:54:07,413 TRACK. 5922 03:54:07,413 --> 03:54:09,581 I WOULD LOVE THAT. 5923 03:54:09,581 --> 03:54:11,784 I'VE BEEN IN TOUCH WITH JESS AT 5924 03:54:11,784 --> 03:54:13,886 TURN TWO FOR SOME TIME, THEY ARE 5925 03:54:13,886 --> 03:54:15,721 JUST STARTING OUT. 5926 03:54:15,721 --> 03:54:19,124 IN MY OPINION TURN TWO IS BY 5927 03:54:19,124 --> 03:54:20,526 PARENTS FOR PARENTS BUT THAT'S 5928 03:54:20,526 --> 03:54:28,434 ALWAYS WHAT IT'S SUPPOSED TO BE. 5929 03:54:28,434 --> 03:54:31,070 INCLUSION OF SCIENTIFIC DATA IS 5930 03:54:31,070 --> 03:54:33,238 FILTERED BY A.I. THAT PICKS OUT 5931 03:54:33,238 --> 03:54:34,573 AND SUMMARIZES PAPERS FOR 5932 03:54:34,573 --> 03:54:34,940 PARENTS. 5933 03:54:34,940 --> 03:54:36,175 I'VE EVALUATED MANY TIMES OVER, 5934 03:54:36,175 --> 03:54:39,945 IT'S THE LEVEL OF A BAD 5935 03:54:39,945 --> 03:54:40,212 UNDERGRAD. 5936 03:54:40,212 --> 03:54:42,114 I'VE CONVINCED JESS YOU HAVE TO 5937 03:54:42,114 --> 03:54:44,550 HAVE ACTUAL SCIENTISTS PICK OUT 5938 03:54:44,550 --> 03:54:46,085 THESE PAPERS AND DECIDE WHAT'S 5939 03:54:46,085 --> 03:54:47,619 IMPORTANT, IS THIS A GOOD 5940 03:54:47,619 --> 03:54:49,154 JOURNAL, RELIABLE, A.I. IS NOT 5941 03:54:49,154 --> 03:54:55,360 CAPABLE OF DOING THAT RIGHT NOW. 5942 03:54:55,360 --> 03:54:57,429 HOW TO DESCRIBE IT AND SHE'S 5943 03:54:57,429 --> 03:55:00,866 VERY OPEN, SHE'S OVERWHELMED 5944 03:55:00,866 --> 03:55:01,834 GETTING THE APP ON. 5945 03:55:01,834 --> 03:55:04,036 IF THERE'S A WAY TOKING HOO UP 5946 03:55:04,036 --> 03:55:06,105 SCIENTISTS AND HELP JESS MAKE 5947 03:55:06,105 --> 03:55:10,375 THIS, MAKE HER APP A LITTLE BIT 5948 03:55:10,375 --> 03:55:12,644 MORE KIND OF RESEARCH OBJECTIVE 5949 03:55:12,644 --> 03:55:13,746 THAT WOULD BE FANTASTIC. 5950 03:55:13,746 --> 03:55:17,916 SO I THINK YOU'RE RIGHT ON THE 5951 03:55:17,916 --> 03:55:19,151 HEAD. 5952 03:55:19,151 --> 03:55:20,753 I LOVE IT BECAUSE THERE'S SO FEW 5953 03:55:20,753 --> 03:55:24,490 AVENUES FOR SCIENTISTS TO 5954 03:55:24,490 --> 03:55:25,557 DIRECTLY INTERACT WITH THE 5955 03:55:25,557 --> 03:55:26,492 DISABILITY COMMUNITY. 5956 03:55:26,492 --> 03:55:27,559 FORMER PARTICIPANTS IS A GREAT 5957 03:55:27,559 --> 03:55:29,862 START BUT IT'S A GREAT TOOL TO 5958 03:55:29,862 --> 03:55:31,930 INTERACT WITH THE DISABILITY 5959 03:55:31,930 --> 03:55:33,599 COMMUNITY AND I WISH THERE WERE 5960 03:55:33,599 --> 03:55:34,767 MORE LIKE IT. 5961 03:55:34,767 --> 03:55:37,202 WHERE DOES THE MONEY COME FROM? 5962 03:55:37,202 --> 03:55:38,837 SHE HAD TO MORTGAGE A HOUSE TO 5963 03:55:38,837 --> 03:55:42,741 PAY FOR IT AND GOT AUSTRALIA, 5964 03:55:42,741 --> 03:55:44,076 GREAT REHAB ORGANIZATION, GREAT 5965 03:55:44,076 --> 03:55:45,277 ENVIRONMENT, SHE GOT THROUGH 5966 03:55:45,277 --> 03:55:46,812 POLICY ALLIANCE TO FUND IT AND 5967 03:55:46,812 --> 03:55:48,881 GOT MONEY FROM ELSEWHERE BUT HOW 5968 03:55:48,881 --> 03:55:50,315 WOULD WE IMITATE THAT HERE? 5969 03:55:50,315 --> 03:55:54,353 I THINK YOU'RE RIGHT ON THE HEAD 5970 03:55:54,353 --> 03:55:56,555 WITH ALL THAT, YEAH. 5971 03:55:56,555 --> 03:55:59,391 >> LAURA? 5972 03:55:59,391 --> 03:56:02,995 >> WONDER IF THERE'S NEEDS AND 5973 03:56:02,995 --> 03:56:04,663 OPPORTUNITIES FOR INCLUSION AND 5974 03:56:04,663 --> 03:56:10,202 LIVED EXPERIENCE AND REVIEW 5975 03:56:10,202 --> 03:56:10,435 PROCESS? 5976 03:56:10,435 --> 03:56:11,136 >> WELL -- 5977 03:56:11,136 --> 03:56:15,307 >> I'LL TAKE THAT ONE. 5978 03:56:15,307 --> 03:56:16,942 >> IT'S NOT ME. 5979 03:56:16,942 --> 03:56:17,976 >> HI, JAMES. 5980 03:56:17,976 --> 03:56:20,078 LET'S GET THE CAMERA RIGHT. 5981 03:56:20,078 --> 03:56:20,546 >> HI, THERESA. 5982 03:56:20,546 --> 03:56:21,814 >> THANK YOU SO MUCH. 5983 03:56:21,814 --> 03:56:26,318 JAMES AND I KNOW EACH OTHER FOR 5984 03:56:26,318 --> 03:56:27,953 A LONG, LONG TIME. 5985 03:56:27,953 --> 03:56:30,222 SO GRATEFUL YOU WERE ABLE TO 5986 03:56:30,222 --> 03:56:33,292 SHARE YOUR STORY AND I HOPE 5987 03:56:33,292 --> 03:56:35,594 LIBBY IS DOING WELL, AS WELL AS 5988 03:56:35,594 --> 03:56:37,129 SHE'S GOING TO RIGHT NOW. 5989 03:56:37,129 --> 03:56:40,399 I HOPE YOU AND LINDSAY AND THE 5990 03:56:40,399 --> 03:56:41,166 BOYS ARE DOING OKAY. 5991 03:56:41,166 --> 03:56:45,370 >> THANK YOU. 5992 03:56:45,370 --> 03:56:47,840 >> BACK IN OHIO, REVIEW, WE GET 5993 03:56:47,840 --> 03:56:52,678 THIS QUESTION A LOT. 5994 03:56:52,678 --> 03:56:54,847 SO, REVIEW HAS LOTS OF BOXES 5995 03:56:54,847 --> 03:56:58,016 THAT THEY ARE TRYING TO MARK, 5996 03:56:58,016 --> 03:57:01,420 AND DISABILITY STATUS IS NOT ONE 5997 03:57:01,420 --> 03:57:02,187 OF THEM. 5998 03:57:02,187 --> 03:57:05,357 SO, THAT DOESN'T MEAN WE DON'T 5999 03:57:05,357 --> 03:57:07,759 CARE ABOUT IT, ESPECIALLY NCMRR. 6000 03:57:07,759 --> 03:57:10,262 SO WE'VE HAD MANY CONVERSATIONS 6001 03:57:10,262 --> 03:57:12,564 WITH OUR REVIEW -- THE REVIEW 6002 03:57:12,564 --> 03:57:14,967 OFFICERS THAT ARE GOING TO DO 6003 03:57:14,967 --> 03:57:16,735 OUR RFAs, AND WE HAVE 6004 03:57:16,735 --> 03:57:17,502 EMPHASIZED WITH THEM HOW 6005 03:57:17,502 --> 03:57:18,370 IMPORTANT IT IS. 6006 03:57:18,370 --> 03:57:20,639 EVEN THOUGH IT'S NOT SOMETHING 6007 03:57:20,639 --> 03:57:22,507 THAT THEY ARE ROUTINELY AT THIS 6008 03:57:22,507 --> 03:57:26,345 POINT, WE'RE GOING TO HEAR FROM 6009 03:57:26,345 --> 03:57:32,851 ALISON CERNICH LATER, MORE OF AN 6010 03:57:32,851 --> 03:57:34,052 NIH-WIDE STRATEGY BUT WHERE WE 6011 03:57:34,052 --> 03:57:39,858 CAN MAKE A DIFFERENCE IS WHERE 6012 03:57:39,858 --> 03:57:41,994 WE'RE EXERTING OUR NEED BECAUSE 6013 03:57:41,994 --> 03:57:51,370 IT REALLY IS IMPORTANT. 6014 03:57:51,370 --> 03:57:55,240 >> FRANCISCO AND THEN DAOFEN. 6015 03:57:55,240 --> 03:57:56,842 >> HI, JAMES. 6016 03:57:56,842 --> 03:58:01,146 WE ALSO GO WE BACK AND, LIKE THE 6017 03:58:01,146 --> 03:58:04,216 OTHERS, I REALLY WANTED TO 6018 03:58:04,216 --> 03:58:05,550 APPLAUD YOUR COURAGE AND 6019 03:58:05,550 --> 03:58:09,688 OPENNESS WITH THIS. 6020 03:58:09,688 --> 03:58:12,090 BUT ALSO YOUR ABILITY TO 6021 03:58:12,090 --> 03:58:13,659 CHALLENGE US WITH WHAT NEEDS TO 6022 03:58:13,659 --> 03:58:15,294 BE DONE, RIGHT? 6023 03:58:15,294 --> 03:58:17,362 BECAUSE THIS IS NOT GOING TO 6024 03:58:17,362 --> 03:58:18,697 CHANGE ITSELF. 6025 03:58:18,697 --> 03:58:21,667 I REALLY APPRECIATE THAT. 6026 03:58:21,667 --> 03:58:24,303 AND SO THIS IS A DIFFICULT 6027 03:58:24,303 --> 03:58:26,471 PROBLEM, AS YOU KNOW. 6028 03:58:26,471 --> 03:58:28,473 I LIKE WHAT YOU TALKED ABOUT IN 6029 03:58:28,473 --> 03:58:32,945 TERMS OF THE RESOURCE FAIRS THAT 6030 03:58:32,945 --> 03:58:36,548 ARE ACTUALLY ESSENTIALLY 6031 03:58:36,548 --> 03:58:38,784 INDUSTRY DRIVEN, PROMOTIONAL 6032 03:58:38,784 --> 03:58:39,151 EVENTS, RIGHT? 6033 03:58:39,151 --> 03:58:39,918 >> YEAH. 6034 03:58:39,918 --> 03:58:43,488 >> AND YOU AND I, YOU KNOW, HAVE 6035 03:58:43,488 --> 03:58:48,961 THE FORTUNE OF BEING FRIENDS 6036 03:58:48,961 --> 03:58:54,032 WITH ROBERT RENNER, AND THE 6037 03:58:54,032 --> 03:59:00,806 DECIDE-A-THON, ESSENTIALLY THE 6038 03:59:00,806 --> 03:59:01,473 OLYMPIADS FOR RESEARCH 6039 03:59:01,473 --> 03:59:04,309 TECHNOLOGY, HEAD TO HEAD 6040 03:59:04,309 --> 03:59:05,110 COMPETITION BETWEEN EXOSKELETONS 6041 03:59:05,110 --> 03:59:07,379 AND THINGS LIKE THAT. 6042 03:59:07,379 --> 03:59:09,448 SO THAT'S SOMETHING THAT'S VERY 6043 03:59:09,448 --> 03:59:11,116 SCARY TO INDUSTRY WHO IS 6044 03:59:11,116 --> 03:59:12,951 DEPENDING ON THE FUNDING AND 6045 03:59:12,951 --> 03:59:15,587 THIS AND THAT BUT I THINK NIH 6046 03:59:15,587 --> 03:59:19,324 DOES REALLY HAVE AN OPPORTUNITY 6047 03:59:19,324 --> 03:59:22,494 THERE TO CREATE LEVEL PLAYING 6048 03:59:22,494 --> 03:59:26,131 FIELDS, WHERE TECHNOLOGY CAN BE 6049 03:59:26,131 --> 03:59:30,035 SHOWCASED, AND DEMONSTRATED TO 6050 03:59:30,035 --> 03:59:32,204 THE PUBLIC WITHOUT THE CONFLICT 6051 03:59:32,204 --> 03:59:35,407 OF INTEREST THAT'S ESSENTIALLY 6052 03:59:35,407 --> 03:59:37,943 BUILT INTO THE CURRENT 6053 03:59:37,943 --> 03:59:40,879 SITUATION, AND THERE WILL BE A 6054 03:59:40,879 --> 03:59:42,514 LOT OF OBJECTORS WHO SAY THE 6055 03:59:42,514 --> 03:59:44,249 FUNDING AGENCY MAY NOT LIKE IT, 6056 03:59:44,249 --> 03:59:47,019 THE COMPANY MAY NOT LIKE IT, ET 6057 03:59:47,019 --> 03:59:47,486 CETERA. 6058 03:59:47,486 --> 03:59:49,421 BUT YOU BROUGHT A VERY GOOD 6059 03:59:49,421 --> 03:59:51,390 POINT WHICH IS THAT THOSE 6060 03:59:51,390 --> 03:59:53,492 INTERESTED IN THE TECHNOLOGY, 6061 03:59:53,492 --> 03:59:57,429 THOSE NEEDING THE TECHNOLOGY, 6062 03:59:57,429 --> 03:59:58,663 SEE THE OPPORTUNITIES. 6063 03:59:58,663 --> 04:00:00,699 IT MAY NOT WORK TREMENDOUSLY 6064 04:00:00,699 --> 04:00:03,769 PERFECTLY, BUT IT WORKS SOME. 6065 04:00:03,769 --> 04:00:06,071 AND SO THIS WOULD BE A VENUE 6066 04:00:06,071 --> 04:00:08,573 WHERE TECHNOLOGY WOULD GET A 6067 04:00:08,573 --> 04:00:12,944 HUGE BOOST, I THINK, IN SPITE OF 6068 04:00:12,944 --> 04:00:15,080 ITS, YOU KNOW, CURRENT DEFICITS. 6069 04:00:15,080 --> 04:00:16,681 SO I REALLY LIKE THE POINT YOU 6070 04:00:16,681 --> 04:00:18,750 MADE, I DON'T KNOW IF YOU HAVE 6071 04:00:18,750 --> 04:00:19,684 SOME OTHER SUGGESTIONS YOU 6072 04:00:19,684 --> 04:00:21,053 THOUGHT ABOUT THIS MUCH LONGER 6073 04:00:21,053 --> 04:00:24,589 THAN ANY OF US HAVE. 6074 04:00:24,589 --> 04:00:30,162 >> WELL, YEAH, THANKS FOR THE 6075 04:00:30,162 --> 04:00:31,596 POINT, FRANCISCO. 6076 04:00:31,596 --> 04:00:33,131 AN UNBIASED WAY, THE NUMBERS ARE 6077 04:00:33,131 --> 04:00:34,900 THE NUMBERS, RIGHT? 6078 04:00:34,900 --> 04:00:37,302 YOU TEST THEM OUT, HEAD TO HEAD, 6079 04:00:37,302 --> 04:00:38,537 A REALLY GOOD POINT. 6080 04:00:38,537 --> 04:00:41,306 I DON'T FEEL WE'RE EVEN AT THE 6081 04:00:41,306 --> 04:00:42,841 STAGE OF UNDERSTANDING BASIC 6082 04:00:42,841 --> 04:00:43,708 MEDICAL DECISIONS ALL IN THE 6083 04:00:43,708 --> 04:00:44,609 SAME LEVEL. 6084 04:00:44,609 --> 04:00:45,677 THERE'S A FAMILY THAT WE'RE 6085 04:00:45,677 --> 04:00:46,778 FRIENDS WITH THAT DOESN'T KNOW 6086 04:00:46,778 --> 04:00:48,213 WHAT A MEDICAID WAIVER IS, 6087 04:00:48,213 --> 04:00:52,150 DIDN'T KNOW THEY QUALIFIED FOR 6088 04:00:52,150 --> 04:00:52,851 MEDICAID WAIVER. 6089 04:00:52,851 --> 04:00:53,952 THAT'S JUST BLOWING MY MIND. 6090 04:00:53,952 --> 04:00:56,254 HOW DO WE KNOW THAT AND THEY 6091 04:00:56,254 --> 04:00:57,656 DON'T KNOW THAT? 6092 04:00:57,656 --> 04:01:00,459 I THINK JUST FROM -- WE CAN TALK 6093 04:01:00,459 --> 04:01:04,262 ABOUT HIGH TECH TO HIGH TECH, 6094 04:01:04,262 --> 04:01:07,099 BUT REALLY JUST THERE'S NO BASE 6095 04:01:07,099 --> 04:01:09,634 KNOWLEDGE, AND I THINK WE NEED 6096 04:01:09,634 --> 04:01:11,803 TO WORK AT THAT, SO I'M NOT 6097 04:01:11,803 --> 04:01:14,005 DRESSING YOUR POINT WHAT CAN WE 6098 04:01:14,005 --> 04:01:15,340 DO TO BRING TECHNOLOGY TO THE 6099 04:01:15,340 --> 04:01:17,008 PEOPLE AND HAVE THEM LOOK AT IT 6100 04:01:17,008 --> 04:01:18,543 IN THE LEVEL PLAYING FIELD. 6101 04:01:18,543 --> 04:01:20,512 I DON'T KNOW IF A COMPETITION IS 6102 04:01:20,512 --> 04:01:22,147 THE NECESSARY WAY TO DO THAT. 6103 04:01:22,147 --> 04:01:23,348 I THINK THERE'S OPPORTUNITIES 6104 04:01:23,348 --> 04:01:23,982 FOR THAT. 6105 04:01:23,982 --> 04:01:26,651 I HAVEN'T THOUGHT OF THAT IN 6106 04:01:26,651 --> 04:01:26,918 DETAIL. 6107 04:01:26,918 --> 04:01:29,087 MY CONCERN IS REALLY THE BASE 6108 04:01:29,087 --> 04:01:30,856 LEVEL OF JUST GETTING BY RIGHT 6109 04:01:30,856 --> 04:01:31,389 NOW. 6110 04:01:31,389 --> 04:01:33,358 WE'RE NOT OPERATING ON THE SAME 6111 04:01:33,358 --> 04:01:33,658 INFORMATION. 6112 04:01:33,658 --> 04:01:35,861 BUT I THINK THAT'S A GREAT IDEA 6113 04:01:35,861 --> 04:01:40,031 WHAT YOU HAVE, A GREAT 6114 04:01:40,031 --> 04:01:40,332 OPPORTUNITY. 6115 04:01:40,332 --> 04:01:45,804 >> THANK YOU. 6116 04:01:45,804 --> 04:01:46,037 DAOFEN? 6117 04:01:46,037 --> 04:01:49,107 >> HELLO, JAMES. 6118 04:01:49,107 --> 04:01:51,376 I REALLY APPRECIATE THIS 6119 04:01:51,376 --> 04:01:52,677 PRESENTATION THAT I THINK ALLOWS 6120 04:01:52,677 --> 04:01:54,212 YOUR LAST STATEMENT TO SAY 6121 04:01:54,212 --> 04:01:55,947 EVERYTHING I WOULD LIKE TO SAY, 6122 04:01:55,947 --> 04:01:57,983 JUST WANTED TO ECHO THAT. 6123 04:01:57,983 --> 04:02:00,886 SINCE YOU ARE AN ENGINEER, WE 6124 04:02:00,886 --> 04:02:02,254 HAVE SEVERAL ENGINEERS IN THE 6125 04:02:02,254 --> 04:02:04,756 ROOM, IT WOULD BE INTERESTING TO 6126 04:02:04,756 --> 04:02:06,424 HEAR WE DON'T HAVE TO SPEND TOO 6127 04:02:06,424 --> 04:02:09,361 MUCH TIME BUT WE DO HAVE 6128 04:02:09,361 --> 04:02:11,096 EMERGING TOOLS AND THE FACT 6129 04:02:11,096 --> 04:02:13,765 DURING YOUR PRESENTATION THESE 6130 04:02:13,765 --> 04:02:17,769 DAYS EVERYTHING I STARTED WITH 6131 04:02:17,769 --> 04:02:24,209 CHATGPT, TYPED WHAT IS JAMES 6132 04:02:24,209 --> 04:02:25,410 SULZER'S LIVED RECENT 6133 04:02:25,410 --> 04:02:30,015 EXPERIENCE, IT GOT IT 80% RIGHT. 6134 04:02:30,015 --> 04:02:32,584 AND JUST WONDER HOW WE CAN 6135 04:02:32,584 --> 04:02:34,586 LEVERAGE EMERGING TOOL TO HELP 6136 04:02:34,586 --> 04:02:38,323 NIH, SO WE CAN HELP YOU BETTER, 6137 04:02:38,323 --> 04:02:41,960 WAS THE QUESTION HE ASKED. 6138 04:02:41,960 --> 04:02:43,495 >> WELL, YEAH, I'M NOT FULLY 6139 04:02:43,495 --> 04:02:47,098 AWARE OF A.I.'S CAPABILITIES. 6140 04:02:47,098 --> 04:02:51,036 CHATGPT IS NOT THE MOST POWERFUL 6141 04:02:51,036 --> 04:02:52,137 VERSION. 6142 04:02:52,137 --> 04:02:55,640 MY EXPERIENCE WITH USING A.I. 6143 04:02:55,640 --> 04:02:57,209 FOR SCIENTIFIC RESEARCH IS IT'S 6144 04:02:57,209 --> 04:03:00,045 OKAY BUT IT STILL LEAVES OUT A 6145 04:03:00,045 --> 04:03:02,214 LOT OF INFORMATION, MAYBE 80% 6146 04:03:02,214 --> 04:03:04,950 OKAY, SOMETIMES THAT 20% IS 6147 04:03:04,950 --> 04:03:06,384 IMPORTANT INFORMATION OR IT 6148 04:03:06,384 --> 04:03:09,888 COULD GUIDE YOU WRONG. 6149 04:03:09,888 --> 04:03:11,323 I'M STILL SKEPTICAL WHETHER IT 6150 04:03:11,323 --> 04:03:11,756 IS. 6151 04:03:11,756 --> 04:03:13,391 I MENTIONED THE PROBLEM EARLIER, 6152 04:03:13,391 --> 04:03:15,560 NO CENTRAL DATABASE OF REHAB 6153 04:03:15,560 --> 04:03:17,762 TECHNOLOGY, NO CENTRAL DATABASE 6154 04:03:17,762 --> 04:03:19,164 OF THERAPIES OUT THERE. 6155 04:03:19,164 --> 04:03:21,266 IT'S HARD FOR A HUMAN TO 6156 04:03:21,266 --> 04:03:22,567 MAINTAIN THEM. 6157 04:03:22,567 --> 04:03:23,868 TWO GUYS FROM CANADA ARE TRYING 6158 04:03:23,868 --> 04:03:25,070 TO DO THAT. 6159 04:03:25,070 --> 04:03:25,437 THEY STRUGGLED. 6160 04:03:25,437 --> 04:03:28,039 I DON'T KNOW WHERE THEY ARE NOW. 6161 04:03:28,039 --> 04:03:34,279 THEY PROBLEM ABLE GAVE UP ON IT. 6162 04:03:34,279 --> 04:03:35,814 IT'S REALLY UNFORTUNATE. 6163 04:03:35,814 --> 04:03:40,418 I WONDER IF A.I. COULD HELP 6164 04:03:40,418 --> 04:03:41,853 DEVELOP A CENTRAL HUB OF 6165 04:03:41,853 --> 04:03:42,153 INFORMATION. 6166 04:03:42,153 --> 04:03:45,890 >> ONE LAST COMMENT OR QUESTION, 6167 04:03:45,890 --> 04:03:46,157 KATHLEEN. 6168 04:03:46,157 --> 04:03:47,525 >> THANK YOU. 6169 04:03:47,525 --> 04:03:49,761 IT'S REALLY GREAT TO HEAR YOUR 6170 04:03:49,761 --> 04:03:51,496 PERSPECTIVE AND YOUR EXPERIENCE. 6171 04:03:51,496 --> 04:03:53,331 THAT'S REALLY IMPORTANT. 6172 04:03:53,331 --> 04:03:56,201 I WANT TO SHARE THAT THE 6173 04:03:56,201 --> 04:03:59,704 NATIONAL M.S. SOCIETY HAS TRIED 6174 04:03:59,704 --> 04:04:00,772 TO EMBRACE THAT, TRYING TO 6175 04:04:00,772 --> 04:04:03,174 LISTEN AND SEE HOW WE CAN MAKE 6176 04:04:03,174 --> 04:04:06,344 IT BETTER BUT THINGS WE'VE DONE, 6177 04:04:06,344 --> 04:04:09,547 WE HAVE INCLUDED PEOPLE WITH 6178 04:04:09,547 --> 04:04:13,918 M.S. IN REVIEW OF GRANTS, THEY 6179 04:04:13,918 --> 04:04:15,387 COME TOGETHER AS A GROUP OF 6180 04:04:15,387 --> 04:04:17,188 PEOPLE LIVING WITH M.S. 6181 04:04:17,188 --> 04:04:19,391 INCLUDING CHILDREN AND PARENTS 6182 04:04:19,391 --> 04:04:20,358 AND CAREGIVERS. 6183 04:04:20,358 --> 04:04:22,427 IT'S HARD TO CAPTURE THE WHOLE 6184 04:04:22,427 --> 04:04:22,694 COMMUNITY. 6185 04:04:22,694 --> 04:04:26,064 THAT'S ONE BIG PROBLEM WE HAVE, 6186 04:04:26,064 --> 04:04:26,931 IN 14 PEOPLE. 6187 04:04:26,931 --> 04:04:29,134 BUT WE'RE TRYING TO HEAR FROM 6188 04:04:29,134 --> 04:04:30,135 PEOPLE. 6189 04:04:30,135 --> 04:04:32,971 WE DO HAVE TO TEACH THEM ENOUGH 6190 04:04:32,971 --> 04:04:34,272 SCIENCE LIKE YOU SAID TO 6191 04:04:34,272 --> 04:04:35,240 UNDERSTAND THE LAY SUMMARY OF 6192 04:04:35,240 --> 04:04:36,808 THE PROJECTS. 6193 04:04:36,808 --> 04:04:38,410 THAT'S BEEN EYE OPENING. 6194 04:04:38,410 --> 04:04:40,078 FROM MYSELF AS A SCIENTIST 6195 04:04:40,078 --> 04:04:41,479 PERSPECTIVE AND TRYING TO TEACH 6196 04:04:41,479 --> 04:04:43,682 THEM AND HEARING HOW THEY ABSORB 6197 04:04:43,682 --> 04:04:46,084 THAT INFORMATION, THAT'S BEEN 6198 04:04:46,084 --> 04:04:47,552 VERY INFORMATIVE. 6199 04:04:47,552 --> 04:04:50,922 AND ALSO, I THINK I NOTICED WHAT 6200 04:04:50,922 --> 04:04:52,123 HAPPENS IN THE GROUP OF PEOPLE 6201 04:04:52,123 --> 04:04:54,326 WITH M.S. IS THEY END UP 6202 04:04:54,326 --> 04:04:56,161 SUPPORTING EACH OTHER REALLY IN 6203 04:04:56,161 --> 04:04:59,364 A VERY UNIQUE WAY AS THEY SHARED 6204 04:04:59,364 --> 04:05:00,098 THEIR EXPERIENCES. 6205 04:05:00,098 --> 04:05:01,666 I THINK THEY FEEL VALUED THEIR 6206 04:05:01,666 --> 04:05:09,774 PER PERSPECTIVE IS TAKEN INTO 6207 04:05:09,774 --> 04:05:11,209 CONSIDERATION AND IS IT RELEVANT 6208 04:05:11,209 --> 04:05:14,379 TO THIS AREA OF M.S. BECAUSE 6209 04:05:14,379 --> 04:05:15,680 THEY HAVE THE UNIQUE 6210 04:05:15,680 --> 04:05:16,081 PERSPECTIVE. 6211 04:05:16,081 --> 04:05:17,215 I WANT TO SHARE THAT BECAUSE I 6212 04:05:17,215 --> 04:05:19,284 DON'T THINK WE HAVE IT 6213 04:05:19,284 --> 04:05:20,852 ABSOLUTELY RIGHT BUT AT LEAST I 6214 04:05:20,852 --> 04:05:23,355 THINK YOU HAVE THE RIGHT IDEA. 6215 04:05:23,355 --> 04:05:28,593 WE JUST HAVE TO SPREAD THE WORD. 6216 04:05:28,593 --> 04:05:31,996 >> WELL, THANK YOU FOR SHARING. 6217 04:05:31,996 --> 04:05:34,165 I DON'T WANT ACT LIKE I'M SOME 6218 04:05:34,165 --> 04:05:35,734 EXPERT ON HOW TO REVIEW GRANTS 6219 04:05:35,734 --> 04:05:37,235 THE BEST WAY POSSIBLE. 6220 04:05:37,235 --> 04:05:39,003 I'M ARGUING FROM A GENERAL 6221 04:05:39,003 --> 04:05:40,505 PERSPECTIVE OF AS LONG AS WE 6222 04:05:40,505 --> 04:05:42,273 INCLUDE LIVED EXPERIENCE AND 6223 04:05:42,273 --> 04:05:43,141 MULTITUDE OF LIVED EXPERIENCES, 6224 04:05:43,141 --> 04:05:45,577 WHICH AS YOU POINT OUT THAT'S A 6225 04:05:45,577 --> 04:05:47,445 PRACTICAL ISSUE, AGAIN LIKE ALL 6226 04:05:47,445 --> 04:05:50,448 OF INDIA, SO MANY TYPES OF LIVED 6227 04:05:50,448 --> 04:05:52,684 EXPERIENCES AND A LOT OF ISSUES. 6228 04:05:52,684 --> 04:05:54,219 I'M NOT GOING TO PASS JUDGMENT 6229 04:05:54,219 --> 04:05:55,653 ON SOMETHING I'M NOT AN EXPERT 6230 04:05:55,653 --> 04:05:56,087 ON. 6231 04:05:56,087 --> 04:05:58,256 WHAT YOU'RE DOING IS GREAT AND I 6232 04:05:58,256 --> 04:05:59,491 THINK MAYBE I DON'T KNOW IF 6233 04:05:59,491 --> 04:06:00,792 YOU'VE SPOKEN TO PEOPLE AT 6234 04:06:00,792 --> 04:06:02,527 NIDILRR TO FIGURE OUT HOW THEY 6235 04:06:02,527 --> 04:06:05,497 HANDLE THESE TO KNOW HOW THAT 6236 04:06:05,497 --> 04:06:05,764 COMPARES. 6237 04:06:05,764 --> 04:06:16,241 THANKS FOR BRINGING THAT UP. 6238 04:06:22,013 --> 04:06:23,515 >> WE'VE TAKEN FOLKS THAT ARE 6239 04:06:23,515 --> 04:06:25,483 NOT REALLY GROUNDED, THEY JUST 6240 04:06:25,483 --> 04:06:27,585 EXPOSE THEM TO A FAMILY, A 6241 04:06:27,585 --> 04:06:30,121 PERSON THAT HAS SOME NEEDS FOR 6242 04:06:30,121 --> 04:06:32,323 PART OF THE DAY, AND IT HELPED 6243 04:06:32,323 --> 04:06:37,762 THEM DESIGN LOCAL SOLUTIONS, 6244 04:06:37,762 --> 04:06:40,265 TAKING WHEELCHAIRS OUT IF IT'S 6245 04:06:40,265 --> 04:06:43,902 SNOWY OR ICY, SIMPLE LOCAL 6246 04:06:43,902 --> 04:06:45,970 SOLUTION, SO MUCH REORIENTS THEM 6247 04:06:45,970 --> 04:06:50,008 ON THEIR RESEARCH, JUST REALLY 6248 04:06:50,008 --> 04:06:50,575 GROUNDS IT. 6249 04:06:50,575 --> 04:06:53,845 ANOTHER ISSUE WHEN WE DO HAVE 6250 04:06:53,845 --> 04:06:56,481 SOLUTIONS HOW DO YOU SHARE LOCAL 6251 04:06:56,481 --> 04:06:57,549 SOLUTIONS, YOU WORKED OUT WITH 6252 04:06:57,549 --> 04:06:59,717 YOUR WIFE OR FAMILY, HOW DO WE 6253 04:06:59,717 --> 04:07:01,719 THEN PASS ON TO THE NEXT PERSON 6254 04:07:01,719 --> 04:07:07,725 IN THE SAME SPOT THAT NEEDS THE 6255 04:07:07,725 --> 04:07:08,159 SAME ISSUES? 6256 04:07:08,159 --> 04:07:09,928 >> YEAH, THAT'S WHAT TURN TWO 6257 04:07:09,928 --> 04:07:11,830 AIMS TO DO, IT'S WHAT THEY 6258 04:07:11,830 --> 04:07:13,465 SHARE. 6259 04:07:13,465 --> 04:07:15,200 I DON'T KNOW IF HOW THEIR 6260 04:07:15,200 --> 04:07:17,268 DATABASE OPERATES BUT THAT'S THE 6261 04:07:17,268 --> 04:07:20,338 POINT OF THAT ONE TOOL JUST FOR 6262 04:07:20,338 --> 04:07:21,673 PARENTS WITH KIDS OF C P. 6263 04:07:21,673 --> 04:07:24,375 I THINK THIS IS GREAT THAT NIH 6264 04:07:24,375 --> 04:07:25,610 COULD BE INVOLVED. 6265 04:07:25,610 --> 04:07:27,011 WE'RE OVER TIME. 6266 04:07:27,011 --> 04:07:27,812 I APPRECIATE IT. 6267 04:07:27,812 --> 04:07:30,348 THANK YOU FOR HAVING ME. 6268 04:07:30,348 --> 04:07:34,452 >> JAMES, WE APPRECIATE YOUR 6269 04:07:34,452 --> 04:07:35,053 TALK. 6270 04:07:35,053 --> 04:07:37,422 WE APPRECIATE THE WORK AND KNOW 6271 04:07:37,422 --> 04:07:39,491 YOU AND YOUR FAMILY, WE WANT TO 6272 04:07:39,491 --> 04:07:42,293 GIVE YOU OUR WISHES AND SUPPORT. 6273 04:07:42,293 --> 04:07:50,635 >> I APPRECIATE IT. 6274 04:07:50,635 --> 04:07:51,369 THANK YOU, EVERYONE. 6275 04:07:51,369 --> 04:07:55,507 >> YOU'RE GETTING A ROUND OF 6276 04:07:55,507 --> 04:07:55,940 APPLAUSE HERE. 6277 04:07:55,940 --> 04:07:57,842 >> WE NEED TO TALK, JAMES. 6278 04:07:57,842 --> 04:08:00,011 I HAVE SOME SUGGESTIONS FOR YOU. 6279 04:08:00,011 --> 04:08:02,013 >> OKAY. 6280 04:08:02,013 --> 04:08:03,748 ABSOLUTELY, RICK. 6281 04:08:03,748 --> 04:08:05,950 >> THE NEXT SESSION IS ZOOMING 6282 04:08:05,950 --> 04:08:12,757 BACK TO TALK FROM A BROADER 6283 04:08:12,757 --> 04:08:12,957 SENSE. 6284 04:08:12,957 --> 04:08:14,359 RICK SEGAL AND AMY DARRAGH WILL 6285 04:08:14,359 --> 04:08:17,762 TALK ABOUT SOME WORK ABOUT 6286 04:08:17,762 --> 04:08:18,863 RESEARCH INFRASTRUCTURE. 6287 04:08:18,863 --> 04:08:21,933 THE PROGRAM TO TRY TO TALK TO 6288 04:08:21,933 --> 04:08:23,568 RESEARCHERS AT A BROADER LEVEL 6289 04:08:23,568 --> 04:08:27,505 ON THESE TOPICS AND HOW TO 6290 04:08:27,505 --> 04:08:28,273 REALLY FROM THEIR STANDPOINT HOW 6291 04:08:28,273 --> 04:08:31,109 DO YOU TRY TO INCLUDE PEOPLE 6292 04:08:31,109 --> 04:08:34,612 WITH LIVED EXPERIENCE INTO SOME 6293 04:08:34,612 --> 04:08:35,580 DISCUSSIONS. 6294 04:08:35,580 --> 04:08:38,116 SO IT'S A SETUP AFTER HAVING YOU 6295 04:08:38,116 --> 04:08:40,318 BRING IT NOW WE'RE GOING TO TALK 6296 04:08:40,318 --> 04:08:42,720 FROM THE OTHER END, AND I WANT 6297 04:08:42,720 --> 04:08:45,223 TO INTRODUCE RICK AND AMY. 6298 04:08:45,223 --> 04:08:49,861 RICK IS PROFESSOR IN THE COLLEGE 6299 04:08:49,861 --> 04:08:50,762 OF HEALTH PROFESSIONALS, MEDICAL 6300 04:08:50,762 --> 04:08:53,364 UNIVERSITY OF SOUTH CAROLINA. 6301 04:08:53,364 --> 04:08:55,233 HE'S BEEN KNOWN TO SNEAK TO 6302 04:08:55,233 --> 04:08:58,836 NORTH CAROLINA TO THE ACADEMIC 6303 04:08:58,836 --> 04:09:00,271 ROOTS, YOU MIGHT FIND HIM UP 6304 04:09:00,271 --> 04:09:01,573 THAT WAY THESE DAYS. 6305 04:09:01,573 --> 04:09:02,874 THESE BEEN INVITED TO SPEAK 6306 04:09:02,874 --> 04:09:06,611 ABOUT HIS ROLE IN THE MEDICAL 6307 04:09:06,611 --> 04:09:10,748 REHABILITATION RESEARCH RESOURCE 6308 04:09:10,748 --> 04:09:12,517 NETWORK, REALLY GREAT IN 6309 04:09:12,517 --> 04:09:13,151 COORDINATING. 6310 04:09:13,151 --> 04:09:14,919 WE APPRECIATE HIS EFFORTS, 6311 04:09:14,919 --> 04:09:17,555 TALKING ABOUT AN ANNUAL 6312 04:09:17,555 --> 04:09:18,523 SCIENTIFIC RETREAT. 6313 04:09:18,523 --> 04:09:22,327 AMY IS DIRECTOR OF SCHOOL OF 6314 04:09:22,327 --> 04:09:23,795 HEALTH AND REHAB SCIENCES, 6315 04:09:23,795 --> 04:09:26,397 PROFESSOR AT OHIO STATE 6316 04:09:26,397 --> 04:09:27,932 UNIVERSITY, THE OHIO STATE 6317 04:09:27,932 --> 04:09:28,232 UNIVERSITY. 6318 04:09:28,232 --> 04:09:29,334 SHE'S ACTUALLY ONE OF THE 6319 04:09:29,334 --> 04:09:31,769 DRIVERS OF ONE OF THE OTHER 6320 04:09:31,769 --> 04:09:32,870 RESEARCH INFRASTRUCTURE 6321 04:09:32,870 --> 04:09:35,473 PROGRAMS, ONE THAT FOCUSES ON 6322 04:09:35,473 --> 04:09:38,209 PEDIATRIC REHAB, AND HER MAIN 6323 04:09:38,209 --> 04:09:41,179 RESEARCH INTERESTS ARE PEDIATRIC 6324 04:09:41,179 --> 04:09:44,549 REHAB, PART OF THE PROGRAM 6325 04:09:44,549 --> 04:09:46,884 CALLED "SEE PROGRESS," AND 6326 04:09:46,884 --> 04:09:48,186 RANDALL DAVIS, ANOTHER 6327 04:09:48,186 --> 04:09:50,922 SUPPORTER, IS LURKING IN THE 6328 04:09:50,922 --> 04:09:51,222 BACKGROUND. 6329 04:09:51,222 --> 04:09:51,956 >> HE'S NOT LURKING. 6330 04:09:51,956 --> 04:09:54,325 >> I TURN THIS OVER TO RICK AND 6331 04:09:54,325 --> 04:09:56,060 AMY TO TALK ABOUT EFFORTS TO 6332 04:09:56,060 --> 04:09:57,362 SPREAD THE WORD FAR AND WIDE. 6333 04:09:57,362 --> 04:09:58,463 WE APPRECIATE WHAT THEY HAVE 6334 04:09:58,463 --> 04:10:01,633 BEEN DOING FOR THE INTERSECTION 6335 04:10:01,633 --> 04:10:02,033 NETWORKS. 6336 04:10:02,033 --> 04:10:02,300 RICK, AMY? 6337 04:10:02,300 --> 04:10:03,301 >> THANK YOU VERY MUCH. 6338 04:10:03,301 --> 04:10:06,804 I'M GOING TO DO THE FIRST PART. 6339 04:10:06,804 --> 04:10:10,608 I'M THE LEAD FOR THE 6340 04:10:10,608 --> 04:10:12,510 COORDINATING CENTER. 6341 04:10:12,510 --> 04:10:13,444 RANDALL IS LURKING SOMEWHERE, 6342 04:10:13,444 --> 04:10:18,116 HE'S HERE ON THE ZOOM, IS THE 6343 04:10:18,116 --> 04:10:18,750 ASSOCIATE LEAD. 6344 04:10:18,750 --> 04:10:20,518 AND THANKS FOR THE OPPORTUNITY 6345 04:10:20,518 --> 04:10:22,720 TO SPEAK, IT'S GREAT TO FOLLOW 6346 04:10:22,720 --> 04:10:27,525 JAMES WHO I'VE KNOWN FOR A LONG 6347 04:10:27,525 --> 04:10:28,059 TIME ALSO. 6348 04:10:28,059 --> 04:10:30,028 I'VE DONE A LOT OF WORK OUTSIDE 6349 04:10:30,028 --> 04:10:31,896 OF THIS CENTER RELATED TO SOME 6350 04:10:31,896 --> 04:10:33,431 TOPICS HE WAS PRESENTING SO I 6351 04:10:33,431 --> 04:10:35,400 NEED TO TALK TO HIM LATER 6352 04:10:35,400 --> 04:10:37,602 BECAUSE I HAD SOME INFORMATION 6353 04:10:37,602 --> 04:10:40,238 THAT MAY BE USEFUL. 6354 04:10:40,238 --> 04:10:41,539 THANKS FOR THE OPPORTUNITY. 6355 04:10:41,539 --> 04:10:46,544 WE'RE GOING TO TALK ABOUT OUR 6356 04:10:46,544 --> 04:10:49,614 THIRD ANNUAL RETREAT, WHICH 6357 04:10:49,614 --> 04:10:51,683 IS -- WAS MOVING FROM POTENTIAL 6358 04:10:51,683 --> 04:10:53,317 TO REAL IMPACT, ENGAGING WITH 6359 04:10:53,317 --> 04:10:55,186 BROADER COMMUNITY TO IMPROVE 6360 04:10:55,186 --> 04:10:56,287 TRANSLATION OF REHABILITATION 6361 04:10:56,287 --> 04:10:57,055 RESEARCH INNOVATIONS. 6362 04:10:57,055 --> 04:10:59,557 THIS IS OUR THIRD RETREAT. 6363 04:10:59,557 --> 04:11:02,760 THE FIRST WAS ON PRECISION 6364 04:11:02,760 --> 04:11:03,127 REHABILITATION. 6365 04:11:03,127 --> 04:11:06,230 THE SECOND WAS ON CLINICAL 6366 04:11:06,230 --> 04:11:06,464 TRIALS. 6367 04:11:06,464 --> 04:11:08,099 THESE HAVE BEEN WELL ATTENDED. 6368 04:11:08,099 --> 04:11:09,634 I'LL TALK ABOUT THIS LATER BUT 6369 04:11:09,634 --> 04:11:12,670 ALL OF THE TALKS FROM ALL THREE 6370 04:11:12,670 --> 04:11:18,276 RETREATS ARE UP ON THE WEBSITE, 6371 04:11:18,276 --> 04:11:19,677 CLOSED CAPTIONED ON THE WEBSITE 6372 04:11:19,677 --> 04:11:22,647 FOR PEOPLE THAT ARE MEMBERS OF 6373 04:11:22,647 --> 04:11:23,214 OUR COMMUNITY. 6374 04:11:23,214 --> 04:11:26,250 CLEARLY THIS IS A HOT TOPIC THAT 6375 04:11:26,250 --> 04:11:27,385 CANNOT GO AWAY. 6376 04:11:27,385 --> 04:11:30,655 JAMES REINFORCED THAT. 6377 04:11:30,655 --> 04:11:39,297 THIS IS SOMETHING THAT IS 6378 04:11:39,297 --> 04:11:40,598 INCREDIBLY IMPORTANT. 6379 04:11:40,598 --> 04:11:46,404 AND FOR THOSE THAT DON'T KNOW, 6380 04:11:46,404 --> 04:11:49,340 THE MR 3 NETWORK IS SIX CENTERS, 6381 04:11:49,340 --> 04:11:52,744 ALL OF THE CENTERS PARTICIPATED 6382 04:11:52,744 --> 04:11:54,378 IN DEVELOPING THIS RETREAT THAT 6383 04:11:54,378 --> 04:11:58,983 I'M GOING TO BRIEFLY TALK ABOUT. 6384 04:11:58,983 --> 04:12:01,819 AND THAT INCLUDES THE PEDIATRIC 6385 04:12:01,819 --> 04:12:04,989 CENTER THAT AMY IS INVOLVED 6386 04:12:04,989 --> 04:12:05,456 WITH. 6387 04:12:05,456 --> 04:12:09,460 AND THE CENTERS GO ALL THE WAY 6388 04:12:09,460 --> 04:12:11,996 FROM PEDIATRIC TO ADULT, FROM 6389 04:12:11,996 --> 04:12:12,864 CELLULAR TO LEARNING HEALTH 6390 04:12:12,864 --> 04:12:13,097 SYSTEMS. 6391 04:12:13,097 --> 04:12:16,267 I DO THINK IT'S IMPORTANT TO 6392 04:12:16,267 --> 04:12:16,801 ACKNOWLEDGE OUR PLANNING 6393 04:12:16,801 --> 04:12:22,273 COMMITTEE BECAUSE THEY ARE FROM 6394 04:12:22,273 --> 04:12:25,543 ALL THE CENTERS, FROM C-STAR, 6395 04:12:25,543 --> 04:12:27,745 LEARNING HEALTH SYSTEM REHAB 6396 04:12:27,745 --> 04:12:29,514 NETWORK, CHRISTINE AND MAGGIE 6397 04:12:29,514 --> 04:12:32,016 FROM THE ALLIANCE FOR 6398 04:12:32,016 --> 04:12:36,087 REHABILITATION RESEARCH AND 6399 04:12:36,087 --> 04:12:39,791 TRAINING, RITA AND CAITLIN, AND 6400 04:12:39,791 --> 04:12:42,426 FROM C-PROGRESS AMY DARRAGH. 6401 04:12:42,426 --> 04:12:45,062 FROM RESTORE OUT WEST, STANFORD, 6402 04:12:45,062 --> 04:12:47,198 MATT PETRUCCI AND FROM OUR 6403 04:12:47,198 --> 04:12:49,000 CENTER HERE AT MEDICAL 6404 04:12:49,000 --> 04:12:50,635 UNIVERSITY OF SOUTH CAROLINA, 6405 04:12:50,635 --> 04:12:52,703 THE NATIONAL CENTER OF 6406 04:12:52,703 --> 04:12:56,941 NEUROMODULATION FOR 6407 04:12:56,941 --> 04:13:02,446 REHABILITATION AND COORDINATING 6408 04:13:02,446 --> 04:13:06,751 CENTER FOR MR 3 NETWORK. 6409 04:13:06,751 --> 04:13:07,819 SO A LITTLE BACKGROUND, JAMES 6410 04:13:07,819 --> 04:13:10,454 HIT ON SOME OF THIS EARLIER, 6411 04:13:10,454 --> 04:13:13,090 THAT THE BACKGROUND FOR WHY 6412 04:13:13,090 --> 04:13:15,493 WE'RE DOING THIS, WE DID THIS 6413 04:13:15,493 --> 04:13:17,995 RETREAT, WAS FIRST OF ALL WE ALL 6414 04:13:17,995 --> 04:13:20,064 GOT TOGETHER AND WE WERE 6415 04:13:20,064 --> 04:13:23,601 PLANNING THIS, REALIZED THERE 6416 04:13:23,601 --> 04:13:25,903 ARE ISSUES WITH HAVING EFFECTIVE 6417 04:13:25,903 --> 04:13:28,306 AND EFFICIENT IMPACT ON PEOPLE 6418 04:13:28,306 --> 04:13:30,808 WHO NEED REHABILITATION AND 6419 04:13:30,808 --> 04:13:32,543 THEIR FAMILIES. 6420 04:13:32,543 --> 04:13:34,545 IT'S CLEAR THAT ENGAGING BROAD 6421 04:13:34,545 --> 04:13:36,647 COMMUNITY NEEDS TO HAPPEN EARLY 6422 04:13:36,647 --> 04:13:38,382 IN THE DEVELOPMENT OF RESEARCH 6423 04:13:38,382 --> 04:13:42,653 AND HELP WITH IMPLEMENTATION OF 6424 04:13:42,653 --> 04:13:44,055 RESEARCH, AND THIS IS HOW WE'LL 6425 04:13:44,055 --> 04:13:45,356 HAVE THE MOST IMPACT. 6426 04:13:45,356 --> 04:13:51,362 A FEW OF US HAVE A MEMORY FROM 6427 04:13:51,362 --> 04:13:54,131 2020, WHEN NIH HOSTED SCI 2020 6428 04:13:54,131 --> 04:13:58,069 IN BETHESDA, WHERE IT WAS VERY 6429 04:13:58,069 --> 04:13:59,837 CLEAR THAT BROADER ENGAGEMENT 6430 04:13:59,837 --> 04:14:01,239 WAS NECESSARY BECAUSE ONE OF THE 6431 04:14:01,239 --> 04:14:02,773 STATEMENTS THAT CAME FROM ONE OF 6432 04:14:02,773 --> 04:14:05,610 THE SPEAKERS AT THAT MEETING WAS 6433 04:14:05,610 --> 04:14:07,812 THERE'S BEEN NOTHING DONE IN 6434 04:14:07,812 --> 04:14:08,913 REHABILITATION FOR SPINAL CORD 6435 04:14:08,913 --> 04:14:12,283 INJURY THAT'S HAD ANY IMPACT ON 6436 04:14:12,283 --> 04:14:14,485 HIM, SOMEBODY WITH A SPINAL CORD 6437 04:14:14,485 --> 04:14:14,886 INJURY. 6438 04:14:14,886 --> 04:14:16,687 I THINK ABOUT THIS ALMOST EVERY 6439 04:14:16,687 --> 04:14:17,555 WEEK. 6440 04:14:17,555 --> 04:14:21,058 WE'VE JUST NOT HAD THE IMPACT 6441 04:14:21,058 --> 04:14:21,893 BECAUSE WE'VE NOT INCLUDED 6442 04:14:21,893 --> 04:14:23,561 EVERYBODY THAT NEEDS TO BE 6443 04:14:23,561 --> 04:14:24,729 INCLUDED IN THE PROCESS TO GET 6444 04:14:24,729 --> 04:14:27,198 US TO A POINT OF TRANSLATING. 6445 04:14:27,198 --> 04:14:30,001 SO WE NEEDED TO DO SOMETHING. 6446 04:14:30,001 --> 04:14:32,970 AND WE MIGHT BE JUST HEIGHTENING 6447 04:14:32,970 --> 04:14:34,305 THE CONVERSATION, CLEARLY JAMES 6448 04:14:34,305 --> 04:14:36,707 STARTED THAT PROCESS IN THIS 6449 04:14:36,707 --> 04:14:37,008 MEETING. 6450 04:14:37,008 --> 04:14:42,280 BUT HOPEFULLY OVER TIME WE'LL 6451 04:14:42,280 --> 04:14:43,681 MAKE A REAL DIFFERENCE. 6452 04:14:43,681 --> 04:14:51,355 FOR THIS RETREAT WE WANTED TO 6453 04:14:51,355 --> 04:14:54,425 GET INPUT FROM THE COMMUNITY AND 6454 04:14:54,425 --> 04:14:56,394 HAD A CALL FOR ABSTRACTS, IT 6455 04:14:56,394 --> 04:14:58,229 WASN'T OUT TO THE COMMUNITIES 6456 04:14:58,229 --> 04:14:59,997 BUT RESEARCHERS THAT WERE GOING 6457 04:14:59,997 --> 04:15:06,003 TO WORK WITH BROADER ENGAGEMENT. 6458 04:15:06,003 --> 04:15:07,738 WE HAD 40 SUBMITTED THAT 6459 04:15:07,738 --> 04:15:09,941 DICTATED THE TYPES OF SESSIONS 6460 04:15:09,941 --> 04:15:11,809 AND WE ENDED UP GETTING SPEAKERS 6461 04:15:11,809 --> 04:15:15,012 FROM ACROSS THE COUNTRY AND 6462 04:15:15,012 --> 04:15:15,880 CANADA, 21 INSTITUTIONS, 6463 04:15:15,880 --> 04:15:16,447 PARTICIPATED. 6464 04:15:16,447 --> 04:15:19,717 WE HAD PEOPLE FROM SIX FUNDING 6465 04:15:19,717 --> 04:15:21,686 AGENCIES FROM FOUNDATION TO 6466 04:15:21,686 --> 04:15:23,754 FEDERAL FUNDING, AND WE HAD NINE 6467 04:15:23,754 --> 04:15:29,860 SEPARATE SESSIONS ALONG WITH TWO 6468 04:15:29,860 --> 04:15:30,628 KEYNOTE LECTURES. 6469 04:15:30,628 --> 04:15:32,063 THE SCHEDULE GIVES AN IDEA OF 6470 04:15:32,063 --> 04:15:36,867 BREADTH OF THINGS WE TALKED 6471 04:15:36,867 --> 04:15:37,401 ABOUT. 6472 04:15:37,401 --> 04:15:39,070 WE STARTED WITH KEYNOTE FROM THE 6473 04:15:39,070 --> 04:15:41,138 DIRECTOR OF THE LEARNING CENTER, 6474 04:15:41,138 --> 04:15:43,341 HER TALK WAG INTEGRATING 6475 04:15:43,341 --> 04:15:44,875 KNOWLEDGE TRANSLATION FOR 6476 04:15:44,875 --> 04:15:45,710 GREATER IMPACT. 6477 04:15:45,710 --> 04:15:48,446 AND IT SETS UP BEAUTIFULLY. 6478 04:15:48,446 --> 04:15:50,648 HOW DO WE USE THE INFORMATION 6479 04:15:50,648 --> 04:15:52,616 WE'RE GATHERING, HOW DO WE GET 6480 04:15:52,616 --> 04:15:58,189 IT DONE WELL SO AWAY CAN HAVE 6481 04:15:58,189 --> 04:15:58,522 IMPACT. 6482 04:15:58,522 --> 04:16:03,427 WE HAD A VARIETY OF SESSIONS 6483 04:16:03,427 --> 04:16:04,628 FROM SESSIONS ON CLINICAL 6484 04:16:04,628 --> 04:16:07,064 RESEARCH PARTNERSHIPS, HOW DO WE 6485 04:16:07,064 --> 04:16:10,134 HAVE CLINICIANS AND RESEARCHERS 6486 04:16:10,134 --> 04:16:11,569 WORK TOGETHER IN IDENTIFYING 6487 04:16:11,569 --> 04:16:12,870 SOME PROSECUTES AND RESOLVING 6488 04:16:12,870 --> 04:16:16,374 THEM, HERE ARE SOME OF THE TALKS 6489 04:16:16,374 --> 04:16:18,175 FROM THE FIRST SESSION. 6490 04:16:18,175 --> 04:16:23,914 EACH SPEAKER HAD 20 MINUTES AND 6491 04:16:23,914 --> 04:16:26,684 PLENTY OF TIME FOR DISCUSSION. 6492 04:16:26,684 --> 04:16:28,319 RALPH AND THERESA WHO WERE 6493 04:16:28,319 --> 04:16:30,154 PRESENT KNOW THE DISCUSSION WAS 6494 04:16:30,154 --> 04:16:40,598 LIVELY, BOTH VERBALLY AND 6495 04:16:43,701 --> 04:16:44,602 THROUGH THE CHAT. 6496 04:16:44,602 --> 04:16:47,371 WE HAD SESSIONS OF COMMUNITY 6497 04:16:47,371 --> 04:16:49,106 ENGAGEMENT GETTING STAKEHOLDER 6498 04:16:49,106 --> 04:16:50,608 FEEDBACK RELATED TO PROBLEMS 6499 04:16:50,608 --> 04:16:53,344 WE'RE TRYING TO ADDRESS, WE HAD 6500 04:16:53,344 --> 04:16:57,181 EXCELLENT TALKS IN THAT AREA. 6501 04:16:57,181 --> 04:16:58,716 AMY WILL TALK ABOUT SOME OF 6502 04:16:58,716 --> 04:17:04,655 THESE RELATED ISSUES IN A 6503 04:17:04,655 --> 04:17:06,190 MOMENT, IN HER PRESENTATION. 6504 04:17:06,190 --> 04:17:11,429 WE NEED TO TALK WITH PEOPLE, 6505 04:17:11,429 --> 04:17:16,267 RELATED TO INDUSTRY AND 6506 04:17:16,267 --> 04:17:17,301 TECHNOLOGY DEVELOPMENT, THREE 6507 04:17:17,301 --> 04:17:20,638 SPEAKERS FINISHED WITH RICK 6508 04:17:20,638 --> 04:17:25,009 GREENWALD, PAST CO OF SIMBEX, 6509 04:17:25,009 --> 04:17:26,777 USED TO RUN ONE OF THE 6510 04:17:26,777 --> 04:17:30,714 INFRASTRUCTURE CENTERS THAT WAS 6511 04:17:30,714 --> 04:17:31,682 OUT OF THE NORTHEAST. 6512 04:17:31,682 --> 04:17:34,085 IT WAS GOOD TO TALK WITH 6513 04:17:34,085 --> 04:17:35,386 SOMEBODY ON BOTH SIDES, WHO HAS 6514 04:17:35,386 --> 04:17:37,121 BEEN INVOLVED IN RESEARCH BUT 6515 04:17:37,121 --> 04:17:40,524 ALSO IS VERY IMPORTANT TRYING TO 6516 04:17:40,524 --> 04:17:44,628 COMMERCIALIZE MEDICAL DEVICES 6517 04:17:44,628 --> 04:17:47,465 AND SO FORTH THAT WOULD BE 6518 04:17:47,465 --> 04:17:51,302 USABLE TO CLINICIANS, PATIENTS, 6519 04:17:51,302 --> 04:17:51,735 CARETAKERS. 6520 04:17:51,735 --> 04:17:53,504 WE TALKED ABOUT ADVISORY BOARDS, 6521 04:17:53,504 --> 04:17:56,240 WHAT AMY IS GOING TO FOCUS ON. 6522 04:17:56,240 --> 04:17:57,875 WE HAD SPEAKERS TALKING ABOUT 6523 04:17:57,875 --> 04:18:02,980 HOW THEY WERE USING PARENT 6524 04:18:02,980 --> 04:18:04,448 ADVISORY COUNCILS, AND SO FORTH. 6525 04:18:04,448 --> 04:18:14,992 WE WENT FROM PEOPLE DEALING WITH 6526 04:18:16,093 --> 04:18:17,128 MUSCULOSKELETAL ISSUES, TO 6527 04:18:17,128 --> 04:18:23,834 PEOPLE DEALING WITH PEDIATRIC 6528 04:18:23,834 --> 04:18:24,602 ISSUES. 6529 04:18:24,602 --> 04:18:25,236 WE HAD FUNDING AGENCY 6530 04:18:25,236 --> 04:18:27,438 REPRESENTATIVES THERE. 6531 04:18:27,438 --> 04:18:37,848 YOU CAN SEE FROM NCMRR, VETERANS 6532 04:18:37,848 --> 04:18:40,184 AFFAIRS, NCATS, NIDILRR, CDMRP 6533 04:18:40,184 --> 04:18:44,321 FROM DEPARTMENT OF DEFENSE AND 6534 04:18:44,321 --> 04:18:46,490 THE CRAIG NIELSON FOUNDATION. 6535 04:18:46,490 --> 04:18:47,791 ONE OF THE QUESTIONS, IS IT 6536 04:18:47,791 --> 04:18:53,063 REQUIRED TO MAKE SURE THAT YOU 6537 04:18:53,063 --> 04:18:56,100 HAVE THE RIGHT PARTNERSHIPS AND 6538 04:18:56,100 --> 04:18:58,169 SO FORTH WITH PATIENTS, WITH 6539 04:18:58,169 --> 04:18:59,403 PEOPLE DEVELOPING TECHNOLOGY AND 6540 04:18:59,403 --> 04:19:03,674 SO FORTH, IS THAT A REQUIREMENT, 6541 04:19:03,674 --> 04:19:07,178 WE'RE HEARD DISCUSSION EARLIER 6542 04:19:07,178 --> 04:19:08,579 TODAY HOW THIS MIGHT BE VERY 6543 04:19:08,579 --> 04:19:10,614 IMPORTANT IN HOW WE DETERMINE 6544 04:19:10,614 --> 04:19:20,724 GRANTS FUNDED AND HOW THEY WILL 6545 04:19:20,724 --> 04:19:22,593 BE REVIEWED. 6546 04:19:22,593 --> 04:19:24,328 AIM SHOWING INTERESTING TALKS, 6547 04:19:24,328 --> 04:19:30,701 SOME WAS TECHNOLOGY BASED, USING 6548 04:19:30,701 --> 04:19:31,735 THE SMARTPHONES FOR KINEMATIC 6549 04:19:31,735 --> 04:19:32,870 ANALYSIS IN THE REAL WORLD TO 6550 04:19:32,870 --> 04:19:34,405 DEALING WITH ISSUES WE DON'T 6551 04:19:34,405 --> 04:19:39,043 THINK ENOUGH ABOUT WHERE PEOPLE 6552 04:19:39,043 --> 04:19:41,545 HAVE BEEN INPATIENT REHAB, THEY 6553 04:19:41,545 --> 04:19:43,380 STRUCKEL, AND THEIR FAMILIES 6554 04:19:43,380 --> 04:19:44,715 STRUGGLE, WHEN THEY LEAVE 6555 04:19:44,715 --> 04:19:46,450 INPATIENT REHAB AND THERE'S A 6556 04:19:46,450 --> 04:19:48,185 GAP TRYING TO MAKE SURE THAT 6557 04:19:48,185 --> 04:19:54,525 THEY CAN CONTINUE TO PROGRESS. 6558 04:19:54,525 --> 04:19:57,828 AND WE HAD ANOTHER KEYNOTE 6559 04:19:57,828 --> 04:19:59,330 SPEAKER JIM KRAUSS TALKING ABOUT 6560 04:19:59,330 --> 04:20:04,068 HOW HE'S BEEN INVOLVED IN 6561 04:20:04,068 --> 04:20:08,806 LOOKING AT OUTCOME OF SPINAL 6562 04:20:08,806 --> 04:20:11,742 CORD INJURY FOR 50 YEARS, A 6563 04:20:11,742 --> 04:20:14,478 COHORT HIS PEOPLE HAVE FOLLOWED, 6564 04:20:14,478 --> 04:20:16,113 THIS YEAR IS THE 50th 6565 04:20:16,113 --> 04:20:18,415 ANNIVERSARY, THAT WE NEED TO 6566 04:20:18,415 --> 04:20:20,384 HAVE THOSE PEOPLE REALLY HAVE 6567 04:20:20,384 --> 04:20:24,221 INPUT INTO HOW WE DEAL WITH 6568 04:20:24,221 --> 04:20:25,522 THINGS BECAUSE THEY HAVE THE 6569 04:20:25,522 --> 04:20:28,926 LIVED EXPERIENCE OVER MANY 6570 04:20:28,926 --> 04:20:29,126 YEARS. 6571 04:20:29,126 --> 04:20:33,831 AND WE ALSO NEED TO GET PEOPLE 6572 04:20:33,831 --> 04:20:35,266 INVOLVED IN HOW WE DESIGN 6573 04:20:35,266 --> 04:20:37,768 EQUIPMENT AND DID SESSIONS ON 6574 04:20:37,768 --> 04:20:37,968 THAT. 6575 04:20:37,968 --> 04:20:44,108 AGAIN, CONTINUED WITH THE 6576 04:20:44,108 --> 04:20:44,775 BUILDING OF COMMUNITY 6577 04:20:44,775 --> 04:20:46,410 PARTNERSHIPS, WE WANT THIS TO BE 6578 04:20:46,410 --> 04:20:48,279 USABLE, MAKE SURE RESEARCH IS 6579 04:20:48,279 --> 04:20:49,713 INVOLVED IN THE LARGE HEALTH 6580 04:20:49,713 --> 04:20:52,216 CARE SYSTEMS AND HAD SESSIONS ON 6581 04:20:52,216 --> 04:20:55,819 LEARNING HEALTH SYSTEMS, KIND OF 6582 04:20:55,819 --> 04:20:58,122 THE ULTIMATE OF GETTING THINGS 6583 04:20:58,122 --> 04:21:01,091 OUT THERE. 6584 04:21:01,091 --> 04:21:04,561 FINALLY THERESA DID CLOSING 6585 04:21:04,561 --> 04:21:10,100 REMARKS, A VERY ENGAGING AND 6586 04:21:10,100 --> 04:21:11,602 INTERACTIVE RETREAT, ALL OF THE 6587 04:21:11,602 --> 04:21:15,739 VIDEOS AND PREVIOUS ONES ARE ON 6588 04:21:15,739 --> 04:21:17,508 THE WEBSITE, NCMRR.ORG, THIS IS 6589 04:21:17,508 --> 04:21:24,415 THE LINK FOR THE PAST RETREAT. 6590 04:21:24,415 --> 04:21:33,424 PLEASE TAKE A LOOK AT THOSE. 6591 04:21:33,424 --> 04:21:34,358 ANY QUESTIONS? 6592 04:21:34,358 --> 04:21:36,593 >> LET'S HAVE AMY SPEAK AND DO 6593 04:21:36,593 --> 04:21:39,063 QUESTIONS AT THE END. 6594 04:21:39,063 --> 04:21:40,731 >> OKAY, AMY, TELL ME WHEN TO 6595 04:21:40,731 --> 04:21:41,165 PROGRESS THE SLIDES. 6596 04:21:41,165 --> 04:21:42,166 >> HAPPY TO. 6597 04:21:42,166 --> 04:21:44,768 THANKS FOR HAVING ME. 6598 04:21:44,768 --> 04:21:47,604 I'M EXCITED TO TALK ABOUT THIS 6599 04:21:47,604 --> 04:21:49,807 IDEA OF COMMUNITY PARTNERSHIP 6600 04:21:49,807 --> 04:21:51,108 AND FAMILY ADVISORY GROUPS. 6601 04:21:51,108 --> 04:21:54,411 THIS WAS A MAJOR TOPIC OF 6602 04:21:54,411 --> 04:21:55,612 DISCUSSION AT OUR RETREAT. 6603 04:21:55,612 --> 04:21:57,681 I'LL DO A BRIEF OVERVIEW AND IF 6604 04:21:57,681 --> 04:22:00,751 WE HAVE TIME GIVE YOU A CASE 6605 04:22:00,751 --> 04:22:03,487 STUDY OF A SUCCESSFUL 6606 04:22:03,487 --> 04:22:04,021 PARTNERSHIP THAT'S REALLY 6607 04:22:04,021 --> 04:22:10,728 EVOLVED AS A CLINICAL TRIAL HAS 6608 04:22:10,728 --> 04:22:11,328 PROGRESSED. 6609 04:22:11,328 --> 04:22:15,399 I WANT TO START WITH TALKING 6610 04:22:15,399 --> 04:22:20,237 ABOUT ENRICHING RESEARCH AND A 6611 04:22:20,237 --> 04:22:20,738 DROP-THE-MIC STATEMENT. 6612 04:22:20,738 --> 04:22:23,073 I DON'T KNOW IF I NEED TO SAY 6613 04:22:23,073 --> 04:22:24,842 ANYTHING AFTER THAT BUT WHAT I 6614 04:22:24,842 --> 04:22:26,677 AND MANY COLLEAGUES WHO 6615 04:22:26,677 --> 04:22:28,545 PRESENTED AT OUR RETREAT WOULD 6616 04:22:28,545 --> 04:22:31,382 HAVE ASSERT IS A STUDY TEAM THAT 6617 04:22:31,382 --> 04:22:33,016 INCLUDES BOTH RESEARCHERS AND 6618 04:22:33,016 --> 04:22:34,785 COMMUNITY PARTNERS WHO CAN SHARE 6619 04:22:34,785 --> 04:22:37,821 THAT LIVED EXPERIENCE THAT JAMES 6620 04:22:37,821 --> 04:22:39,690 TALKED ABOUT AND INTEGRAL 6621 04:22:39,690 --> 04:22:41,892 MEMBERS OF THE RESEARCH TEAM 6622 04:22:41,892 --> 04:22:43,394 CONTRIBUTES TO PARTICIPANT 6623 04:22:43,394 --> 04:22:45,496 CENTERED RESEARCH PROCESS AND 6624 04:22:45,496 --> 04:22:48,031 OUTCOMES, IMPROVES RELEVANCE AND 6625 04:22:48,031 --> 04:22:51,301 MEANINGFULNESS OF THE STUDY, AND 6626 04:22:51,301 --> 04:22:53,070 ENRICHES RESEARCH EXPERIENCE FOR 6627 04:22:53,070 --> 04:22:54,705 EVERYONE INVOLVED. 6628 04:22:54,705 --> 04:22:56,340 AND I'M PULLING SOME INFORMATION 6629 04:22:56,340 --> 04:23:01,378 AS I PROGRESS THROUGH THIS FROM 6630 04:23:01,378 --> 04:23:02,146 DISCUSSION THROUGHOUT THE 6631 04:23:02,146 --> 04:23:09,486 RETREAT BUT I'M ALSO GOING TO 6632 04:23:09,486 --> 04:23:11,555 CREDIT MY PARTNERS AND THE 6633 04:23:11,555 --> 04:23:13,991 PARENT COUNCIL WHO REALLY 6634 04:23:13,991 --> 04:23:16,059 INFORMED A LOT OF THE MATERIAL 6635 04:23:16,059 --> 04:23:18,595 I'LL SHARE WITH YOU TODAY. 6636 04:23:18,595 --> 04:23:19,997 YOU CAN MOVE ON. 6637 04:23:19,997 --> 04:23:23,400 SO WHAT ARE FAMILY ADVISORY 6638 04:23:23,400 --> 04:23:23,834 COUNCILS? 6639 04:23:23,834 --> 04:23:27,571 FAMILY ADVISORY COUNCILS IN 6640 04:23:27,571 --> 04:23:28,972 TRADITIONAL SENSE DID WHAT IT 6641 04:23:28,972 --> 04:23:29,606 SOUND LIKE. 6642 04:23:29,606 --> 04:23:32,342 THEY TALKED ABOUT HOW THE STUDY 6643 04:23:32,342 --> 04:23:35,412 WAS PROGRESSING AND GAVE YOU 6644 04:23:35,412 --> 04:23:35,879 INPUT. 6645 04:23:35,879 --> 04:23:38,582 BUT WE'RE ARGUING THAT THESE 6646 04:23:38,582 --> 04:23:41,985 COUNCILS SHOULD BE SERVING AS 6647 04:23:41,985 --> 04:23:43,387 RESEARCH PARTNERS. 6648 04:23:43,387 --> 04:23:45,589 THESE ARE TEAMS OF FAMILIES, I 6649 04:23:45,589 --> 04:23:48,325 DO PEDIATRIC RESEARCH SO THAT'S 6650 04:23:48,325 --> 04:23:49,726 WHY I'M TALKING ABOUT FAMILIES, 6651 04:23:49,726 --> 04:23:52,796 BUT THIS COULD BE CAREGIVERS OF 6652 04:23:52,796 --> 04:23:54,331 ADULTS WITH DISABILITIES AS 6653 04:23:54,331 --> 04:23:54,531 WELL. 6654 04:23:54,531 --> 04:23:57,501 THIS COULD BE INDIVIDUALS WITH 6655 04:23:57,501 --> 04:23:58,502 DISABILITIES AS WELL. 6656 04:23:58,502 --> 04:24:00,904 THIS IS REALLY A COMMUNITY 6657 04:24:00,904 --> 04:24:02,105 PARTNER ADVISORY COUNCIL BUT 6658 04:24:02,105 --> 04:24:04,508 THEY ARE PROVIDING GUIDANCE AND 6659 04:24:04,508 --> 04:24:05,909 FEEDBACK ON ALL ASPECTS OF THE 6660 04:24:05,909 --> 04:24:06,810 TRIAL. 6661 04:24:06,810 --> 04:24:09,313 THESE ARE FOLKS PROVIDING INPUT 6662 04:24:09,313 --> 04:24:11,615 ON THE DESIGN AND RECRUITMENT 6663 04:24:11,615 --> 04:24:13,584 STRATEGIES, HOW YOU ARE 6664 04:24:13,584 --> 04:24:16,220 CONSENTING AND ENROLLING. 6665 04:24:16,220 --> 04:24:20,390 ARE THE OUTCOME MEASURES AND THE 6666 04:24:20,390 --> 04:24:23,660 PRIMARY VARIABLES OF INTEREST 6667 04:24:23,660 --> 04:24:26,063 ACTUALLY MEANINGFUL TO THE 6668 04:24:26,063 --> 04:24:27,798 POPULATIONS THAT YOU ARE 6669 04:24:27,798 --> 04:24:32,202 ATTEMPTING TO SERVE WITH YOUR 6670 04:24:32,202 --> 04:24:32,736 SCIENCE? 6671 04:24:32,736 --> 04:24:38,108 THEY WOULD BE PROVIDES INPUT 6672 04:24:38,108 --> 04:24:39,209 INTO PROTOCOL AND ADJUSTMENTS. 6673 04:24:39,209 --> 04:24:41,378 THIS GROUP IS ACTIVE IN TERMS OF 6674 04:24:41,378 --> 04:24:42,079 COMMUNICATIONS, HOW TO 6675 04:24:42,079 --> 04:24:44,014 COMMUNICATE INFORMATION TO THE 6676 04:24:44,014 --> 04:24:47,818 BROADER COMMUNITY AS WELL AS TO 6677 04:24:47,818 --> 04:24:48,719 POTENTIAL PARTICIPANTS AS WELL 6678 04:24:48,719 --> 04:24:52,589 AS TO PARTICIPANTS ENROLLED IN 6679 04:24:52,589 --> 04:24:53,223 THE STUDY. 6680 04:24:53,223 --> 04:24:56,293 THIS IS A GROUP THAT WILL HELP 6681 04:24:56,293 --> 04:24:59,429 YOU PLAN FOR DISSEMINATION. 6682 04:24:59,429 --> 04:25:01,632 THEY WILL IDENTIFY PATHS FOR 6683 04:25:01,632 --> 04:25:02,933 DISSEMINATION THAT COULD IMPROVE 6684 04:25:02,933 --> 04:25:07,004 THE DIFFUSION AND UPTAKE OF YOUR 6685 04:25:07,004 --> 04:25:08,639 RESULTS WHERE APPROPRIATE. 6686 04:25:08,639 --> 04:25:11,575 THE OTHER REALLY CRITICAL ROLE 6687 04:25:11,575 --> 04:25:15,312 THAT THESE COUNCILS CAN SERVE IS 6688 04:25:15,312 --> 04:25:18,482 TRAINING TO YOUR 6689 04:25:18,482 --> 04:25:20,350 INTERVENTIONIST, YOUR 6690 04:25:20,350 --> 04:25:22,753 PROFESSORS, STUDY COORDINATORS, 6691 04:25:22,753 --> 04:25:24,388 PERSONNEL INTERACTING WITH 6692 04:25:24,388 --> 04:25:25,822 FAMILIES, WITH POTENTIAL 6693 04:25:25,822 --> 04:25:28,759 PARTICIPANTS AND CURRENT 6694 04:25:28,759 --> 04:25:31,161 PARTICIPANTS IN YOUR WORK AND 6695 04:25:31,161 --> 04:25:35,666 HOW TO COMMUNICATE IN A 6696 04:25:35,666 --> 04:25:36,667 SENSITIVE RESPECTFUL LIVED 6697 04:25:36,667 --> 04:25:37,534 EXPERIENCE WAY. 6698 04:25:37,534 --> 04:25:39,403 WE HAVE USED OUR PARENT COUNCIL 6699 04:25:39,403 --> 04:25:40,370 TO DO THIS. 6700 04:25:40,370 --> 04:25:44,341 I'LL TALK ABOUT THAT LATER. 6701 04:25:44,341 --> 04:25:45,309 IT'S BEEN VERY EFFECTIVE. 6702 04:25:45,309 --> 04:25:47,277 THEY ARE ABLE TO PROVIDE 6703 04:25:47,277 --> 04:25:50,447 RESOURCES FOR IN OUR CASE 6704 04:25:50,447 --> 04:25:52,282 FAMILIES AND MAY COMMUNICATE 6705 04:25:52,282 --> 04:25:56,019 WITH THOSE PARTICIPANTS AND 6706 04:25:56,019 --> 04:25:56,620 PARTICIPANT FAMILIES, 6707 04:25:56,620 --> 04:25:58,655 DISSEMINATE KNOWLEDGE THROUGH 6708 04:25:58,655 --> 04:25:59,923 COMMUNITY ACTIVITIES, 6709 04:25:59,923 --> 04:26:01,925 PRESENTATIONS, ADVOCACY GROUPS, 6710 04:26:01,925 --> 04:26:03,994 SOCIAL MEDIA, OUR PARENT COUNCIL 6711 04:26:03,994 --> 04:26:06,096 IS PUBLISHING A PAPER, FOR 6712 04:26:06,096 --> 04:26:07,431 EXAMPLE, AND IS GIVING NATIONAL 6713 04:26:07,431 --> 04:26:08,699 TALKS ALL THE TIME. 6714 04:26:08,699 --> 04:26:11,034 AND THEN THIS IS ALSO A GROUP 6715 04:26:11,034 --> 04:26:12,970 THAT CAN ASSIST WITH RECRUITMENT 6716 04:26:12,970 --> 04:26:14,838 AS THEY SPEAK WITH FAMILIES 6717 04:26:14,838 --> 04:26:17,808 INTERESTED IN THE STUDY AND HELP 6718 04:26:17,808 --> 04:26:18,709 DIRECT THEM TOWARDS COORDINATORS 6719 04:26:18,709 --> 04:26:21,645 WHO MIGHT BE ABLE TO GIVE THEM 6720 04:26:21,645 --> 04:26:24,715 THAT MORE DETAILED INFORMATION 6721 04:26:24,715 --> 04:26:29,586 AND ASSESS ELIGIBILITY. 6722 04:26:29,586 --> 04:26:30,187 NEXT SLIDE. 6723 04:26:30,187 --> 04:26:32,689 IF YOU ARE INTERESTED IN 6724 04:26:32,689 --> 04:26:33,557 INTEGRATING COMMUNITY PARTNERS 6725 04:26:33,557 --> 04:26:36,326 IN THIS WAY, WHETHER YOU CALL IT 6726 04:26:36,326 --> 04:26:38,061 AN ADVISORY COUNCIL OR THESE ARE 6727 04:26:38,061 --> 04:26:39,029 JUST MEMBERS OF YOUR RESEARCH 6728 04:26:39,029 --> 04:26:42,532 TEAM OR YOU DECIDE TO HAVE BOTH, 6729 04:26:42,532 --> 04:26:43,967 ALSO POSSIBLE. 6730 04:26:43,967 --> 04:26:44,935 THERE'S SOME IMPORTANT 6731 04:26:44,935 --> 04:26:46,503 CONSIDERATIONS AS YOU'RE MOVING 6732 04:26:46,503 --> 04:26:48,138 FORWARD WITH WRITING AND 6733 04:26:48,138 --> 04:26:50,974 DESIGNING YOUR PROJECT. 6734 04:26:50,974 --> 04:26:51,975 AND THESE ARE PEOPLE WHO SHOULD 6735 04:26:51,975 --> 04:26:55,012 BE AT THE TABLE FROM THE START 6736 04:26:55,012 --> 04:26:57,648 WHEN YOU BEGIN THE WRITING 6737 04:26:57,648 --> 04:26:59,850 PROCESS AND THAT INITIAL IDEA 6738 04:26:59,850 --> 04:27:01,418 THAT INITIAL PLANNING PROCESS. 6739 04:27:01,418 --> 04:27:03,687 AND THINK ABOUT THEIR ROLES. 6740 04:27:03,687 --> 04:27:05,322 FOR EXAMPLE, RECRUITMENT. 6741 04:27:05,322 --> 04:27:06,623 WILL THAT ADVISORY COUNCIL OR 6742 04:27:06,623 --> 04:27:11,862 WILL THAT TEAM REVIEW YOUR 6743 04:27:11,862 --> 04:27:13,597 MATERIALS IF YOU COULD SEE WHAT 6744 04:27:13,597 --> 04:27:15,499 OUR TEAM PUT TOGETHER VERSUS 6745 04:27:15,499 --> 04:27:17,034 WHAT THE FAMILY ADVISORY TEAM 6746 04:27:17,034 --> 04:27:19,002 PUT TOGETHER, IT'S NIGHT AND 6747 04:27:19,002 --> 04:27:19,369 DAY. 6748 04:27:19,369 --> 04:27:24,808 SO MUCH BETTER ONCE WE GOT OVER 6749 04:27:24,808 --> 04:27:27,210 OURSELVES AS SCIENTISTS AND LET 6750 04:27:27,210 --> 04:27:28,545 FAMILIES TAKE CONTROL. 6751 04:27:28,545 --> 04:27:30,714 BUT WILL THEY BE INVOLVED, WILL 6752 04:27:30,714 --> 04:27:32,049 THEY NEED TO BUILD FACEBOOK 6753 04:27:32,049 --> 04:27:34,651 PAGE, WILL THEY BE INVOLVED WITH 6754 04:27:34,651 --> 04:27:36,386 SOCIAL MEDIA CAMPAIGNS AND TO 6755 04:27:36,386 --> 04:27:38,488 WHAT EXTENT WILL THEY BE 6756 04:27:38,488 --> 04:27:39,222 COMMUNICATING WITH YOUR 6757 04:27:39,222 --> 04:27:41,858 PARTICIPANTS AND IF THAT'S THE 6758 04:27:41,858 --> 04:27:46,029 CASE THEN WHAT SORTS OF IRB 6759 04:27:46,029 --> 04:27:49,866 CONSIDERATIONS MIGHT BE PART OF 6760 04:27:49,866 --> 04:27:50,067 THAT. 6761 04:27:50,067 --> 04:27:53,904 SO WILL THEY BE COMMUNICATING 6762 04:27:53,904 --> 04:27:55,572 WITH PARTICIPANTS THROUGHOUT THE 6763 04:27:55,572 --> 04:27:58,075 TRIAL, AGAIN ARE THERE 6764 04:27:58,075 --> 04:27:58,742 REGULATORY CONSIDERATIONS, DO 6765 04:27:58,742 --> 04:28:01,778 YOU WANT TO BUILD SOME TIME FOR 6766 04:28:01,778 --> 04:28:04,081 TRAINING INTO YOUR GRANT 6767 04:28:04,081 --> 04:28:04,548 APPLICATION? 6768 04:28:04,548 --> 04:28:06,349 HOW ARE THEY GOING TO BE 6769 04:28:06,349 --> 04:28:07,317 INVOLVED DURING IMPLEMENTATION 6770 04:28:07,317 --> 04:28:11,421 OF THE TRIAL, WHAT IS THEIR ROLE 6771 04:28:11,421 --> 04:28:12,622 AS SCIENTIFIC DECISION MAKERS, 6772 04:28:12,622 --> 04:28:15,025 AS A TRIAL PROCEEDS YOU DO MAKE 6773 04:28:15,025 --> 04:28:16,927 ADJUSTMENTS AND DO CHANGE THINGS 6774 04:28:16,927 --> 04:28:21,164 AS YOU GO. 6775 04:28:21,164 --> 04:28:23,800 AND IS THIS TEAM INVOLVED, IF 6776 04:28:23,800 --> 04:28:25,435 THEY ARE TRUE RESEARCH PARTNERS 6777 04:28:25,435 --> 04:28:28,505 I WOULD ARGUE YES SO WHAT IS 6778 04:28:28,505 --> 04:28:29,806 YOUR CAMPAIGN COMMUNICATION, ARE 6779 04:28:29,806 --> 04:28:32,008 THEY MEMBERS OF THE EXECUTIVE 6780 04:28:32,008 --> 04:28:33,744 STEERING COMMITTEE FOR EXAMPLE, 6781 04:28:33,744 --> 04:28:36,079 WILL THEY HAVE DISTINCT ROLES 6782 04:28:36,079 --> 04:28:39,783 THAT MAYBE FALL OUTSIDE OF 6783 04:28:39,783 --> 04:28:42,753 SCIENTISTS PURVIEW SO A SURVEY 6784 04:28:42,753 --> 04:28:45,589 OR A QUALITY IMPROVEMENT TOOL OR 6785 04:28:45,589 --> 04:28:48,325 SOMETHING THEY HAVE DESIGNED TO 6786 04:28:48,325 --> 04:28:49,559 SOLICIT FEEDBACK ABOUT THE 6787 04:28:49,559 --> 04:28:49,960 TRIAL. 6788 04:28:49,960 --> 04:28:52,796 AND THIS CAN BE USED TO INFORM 6789 04:28:52,796 --> 04:28:55,899 FUTURE STUDIES AND IT MAY BE 6790 04:28:55,899 --> 04:28:59,836 THAT THEY HAVE A RELATIONSHIP 6791 04:28:59,836 --> 04:29:01,371 WITH PARTICIPANTS THAT INVITE 6792 04:29:01,371 --> 04:29:03,673 HONEST FEEDBACK THAT PERHAPS 6793 04:29:03,673 --> 04:29:05,008 FAMILIES WOULD BE HESITANT TO 6794 04:29:05,008 --> 04:29:07,377 PROVIDE IF IT WAS COMING BACK TO 6795 04:29:07,377 --> 04:29:08,478 THE SCIENTIFIC TEAM. 6796 04:29:08,478 --> 04:29:11,882 SO LOTS TO THINK ABOUT WHEN AND 6797 04:29:11,882 --> 04:29:14,818 IF YOU ARE PLANNING ON DOING 6798 04:29:14,818 --> 04:29:15,051 THIS. 6799 04:29:15,051 --> 04:29:16,253 NEXT SLIDE. 6800 04:29:16,253 --> 04:29:18,388 SO WHEN TO DO THIS, WHEN TO 6801 04:29:18,388 --> 04:29:21,324 ENGAGE THEM AS I SAID EARLIER, 6802 04:29:21,324 --> 04:29:23,426 ENGAGE YOUR TEAM, YOUR COMMUNITY 6803 04:29:23,426 --> 04:29:24,728 PARTNERS, FROM THE GET-GO. 6804 04:29:24,728 --> 04:29:27,564 THIS IS AT THE TIME OF DESIGN, 6805 04:29:27,564 --> 04:29:29,833 AT THE TIME OF GRANT WRITING, 6806 04:29:29,833 --> 04:29:32,169 THEY NEED TO CONTRIBUTE TO STUDY 6807 04:29:32,169 --> 04:29:33,904 DESIGN, THEY NEED TO HELP YOU 6808 04:29:33,904 --> 04:29:34,971 THINK THROUGH YOUR POPULATION, 6809 04:29:34,971 --> 04:29:37,507 THEY NEED TO HELP YOU THINK 6810 04:29:37,507 --> 04:29:39,609 THROUGH THAT RECRUITMENT. 6811 04:29:39,609 --> 04:29:42,245 ONE REALLY CRITICAL PIECE OF 6812 04:29:42,245 --> 04:29:44,548 THIS TO EMPHASIZE IS THAT 6813 04:29:44,548 --> 04:29:45,315 OUTCOME MEASURE PIECE, THAT 6814 04:29:45,315 --> 04:29:47,617 THESE ARE THE FOLKS WHO CAN TELL 6815 04:29:47,617 --> 04:29:49,352 YOU AS THE SCIENTIST WHAT 6816 04:29:49,352 --> 04:29:52,322 OUTCOMES ARE MOST IMPORTANT TO 6817 04:29:52,322 --> 04:29:55,826 THEM, TO THEIR PARTICIPATION IN 6818 04:29:55,826 --> 04:29:58,028 LIFE, TO DAILY FUNCTIONING, TO 6819 04:29:58,028 --> 04:29:58,762 THEIR GOALS. 6820 04:29:58,762 --> 04:30:00,964 LISTEN HARD TO YOUR COMMUNITY 6821 04:30:00,964 --> 04:30:05,101 PARTNERS WHEN YOU ARE DEVELOPING 6822 04:30:05,101 --> 04:30:06,670 OUTCOME MEASURES. 6823 04:30:06,670 --> 04:30:08,438 THEY ALSO CAN SPEAK TO THE 6824 04:30:08,438 --> 04:30:11,808 BURDEN OF WHAT YOU'RE PROPOSING, 6825 04:30:11,808 --> 04:30:15,011 SO ARE YOUR ASSESSMENTS TOO 6826 04:30:15,011 --> 04:30:16,213 LONG, TOO COMPLICATED, DO THEY 6827 04:30:16,213 --> 04:30:17,647 NEED TO BE SCHEDULED OVER TWO 6828 04:30:17,647 --> 04:30:19,482 DAYS, WHAT DOES THAT MEAN IN 6829 04:30:19,482 --> 04:30:22,319 TERMS OF FAMILY BURDEN, IS YOUR 6830 04:30:22,319 --> 04:30:23,253 TREATMENT PROTOCOL TOO 6831 04:30:23,253 --> 04:30:25,288 BURDENSOME, DO YOU NEED TO THINK 6832 04:30:25,288 --> 04:30:26,590 THROUGH HOW YOU'RE DELIVERING 6833 04:30:26,590 --> 04:30:28,792 SOMETHING OR HOW YOU'RE 6834 04:30:28,792 --> 04:30:29,793 EXPLAINING WHAT THAT 6835 04:30:29,793 --> 04:30:31,828 PARTICIPATION WILL TRULY MEAN TO 6836 04:30:31,828 --> 04:30:33,697 A FAMILY, SO THAT'S ANOTHER 6837 04:30:33,697 --> 04:30:35,799 REALLY CRITICAL PIECE THAT THEY 6838 04:30:35,799 --> 04:30:36,766 CAN INFORM. 6839 04:30:36,766 --> 04:30:38,101 AND THEN LOTS OF CONSIDERATION 6840 04:30:38,101 --> 04:30:39,603 AROUND HOW YOU'RE GOING TO 6841 04:30:39,603 --> 04:30:41,438 COMMUNICATE, HOW YOU'RE GOING TO 6842 04:30:41,438 --> 04:30:44,875 BRING THIS TEAM TO THE TABLE, TO 6843 04:30:44,875 --> 04:30:47,611 THE WHOLE SCIENTIFIC TEAM'S 6844 04:30:47,611 --> 04:30:48,612 TABLE AND COMMUNICATE. 6845 04:30:48,612 --> 04:30:51,982 ALL RIGHT. 6846 04:30:51,982 --> 04:30:52,749 NEXT SLIDE. 6847 04:30:52,749 --> 04:30:55,051 YOU HAVE TO PAY THEM. 6848 04:30:55,051 --> 04:30:56,920 I CAN'T EMPHASIZE THIS ENOUGH. 6849 04:30:56,920 --> 04:30:58,021 THESE ARE YOUR COMMUNITY 6850 04:30:58,021 --> 04:30:58,321 PARTNERS. 6851 04:30:58,321 --> 04:30:59,956 THEY ARE PART OF YOUR TEAM. 6852 04:30:59,956 --> 04:31:02,692 THEY HAVE TO BE BUILT INTO YOUR 6853 04:31:02,692 --> 04:31:03,026 BUDGET. 6854 04:31:03,026 --> 04:31:05,328 IT'S NOT ONLY PAYING THEM, BUT 6855 04:31:05,328 --> 04:31:08,298 IT IS ALSO PAYING FOR TRAVEL, 6856 04:31:08,298 --> 04:31:10,800 PAYING FOR CONFERENCES IF THEY 6857 04:31:10,800 --> 04:31:12,802 ARE GOING TO DISSEMINATE THEIR 6858 04:31:12,802 --> 04:31:17,040 WORK WITH YOU, SO DON'T FORGET 6859 04:31:17,040 --> 04:31:18,909 YOUR COMMUNITY PARTNERS IN YOUR 6860 04:31:18,909 --> 04:31:20,010 BUDGET AND YOUR BUDGET 6861 04:31:20,010 --> 04:31:21,745 JUSTIFICATION BECAUSE THEY ARE 6862 04:31:21,745 --> 04:31:22,646 YOUR RESEARCH PARTNERS AND WE 6863 04:31:22,646 --> 04:31:26,583 NEED TO THINK OF THEM THAT WAY, 6864 04:31:26,583 --> 04:31:31,821 IN EVERY WAY. 6865 04:31:31,821 --> 04:31:32,722 NEXT SLIDE. 6866 04:31:32,722 --> 04:31:34,157 COMMUNICATION IS IMPORTANT. 6867 04:31:34,157 --> 04:31:37,427 I PUT THIS IN HERE BECAUSE -- 6868 04:31:37,427 --> 04:31:39,829 THIS IS FROM SOME LEARNED 6869 04:31:39,829 --> 04:31:40,196 EXPERIENCE. 6870 04:31:40,196 --> 04:31:41,598 YOUR COMMUNITY PARTNERS ARE 6871 04:31:41,598 --> 04:31:44,334 GOING TO PROVIDE TO YOU, THE 6872 04:31:44,334 --> 04:31:45,335 SCIENTISTS, INFORMATION ON SORT 6873 04:31:45,335 --> 04:31:48,271 OF THAT AS WE KEEP SAYING THIS 6874 04:31:48,271 --> 04:31:50,674 LIVED EXPERIENCE, THE PRACTICAL 6875 04:31:50,674 --> 04:31:53,076 REALITIES OF LIFE. 6876 04:31:53,076 --> 04:31:55,045 THEIR PERSPECTIVES, HOW THOSE 6877 04:31:55,045 --> 04:31:57,480 ARE INTERSECTING WITH THE 6878 04:31:57,480 --> 04:32:00,650 SCIENCE THAT YOU'RE PROPOSING. 6879 04:32:00,650 --> 04:32:02,285 EDUCATION, EDUCATING US ABOUT 6880 04:32:02,285 --> 04:32:04,587 THAT IS CRITICALLY IMPORTANT FOR 6881 04:32:04,587 --> 04:32:09,626 BUILDING BETTER STUDIES AND 6882 04:32:09,626 --> 04:32:12,262 BETTER RESEARCH THAT IT'S MORE 6883 04:32:12,262 --> 04:32:14,464 IMPLEMENTABLE, EASIER FOR UPTAKE 6884 04:32:14,464 --> 04:32:17,300 AND PROBABLY MORE MEANINGFUL. 6885 04:32:17,300 --> 04:32:19,936 OUR JOB IS ABOUT CONTRIBUTING 6886 04:32:19,936 --> 04:32:22,238 EXPERTISE WE HAVE ABOUT 6887 04:32:22,238 --> 04:32:23,340 SCIENTIFIC DESIGN AND 6888 04:32:23,340 --> 04:32:24,874 METHODOLOGY AND WHAT IS 6889 04:32:24,874 --> 04:32:28,812 REGULATORY COMPLIANCE AND WHAT 6890 04:32:28,812 --> 04:32:31,848 IS AN IRB, WHAT IS EQUIPOISE, 6891 04:32:31,848 --> 04:32:33,616 INFORMED CONSENT, MAKING SURE 6892 04:32:33,616 --> 04:32:35,251 OUR COMMUNITY PARTNERS 6893 04:32:35,251 --> 04:32:38,755 UNDERSTAND THOSE PRACTICALITIES 6894 04:32:38,755 --> 04:32:39,856 OF SCIENCE, THIS IMPROVES THE 6895 04:32:39,856 --> 04:32:41,391 QUALITY OF THE PROJECT AND 6896 04:32:41,391 --> 04:32:44,694 PROVIDES YOU WITH WAYS OF 6897 04:32:44,694 --> 04:32:46,096 COMMUNICATING ABOUT WHY SOME 6898 04:32:46,096 --> 04:32:47,964 THINGS, MAYBE WE WANT TO HAVE 6899 04:32:47,964 --> 04:32:50,567 HAPPEN, BUT WE WILL HAVE 6900 04:32:50,567 --> 04:32:52,335 CHALLENGES IMPLEMENTING THEM AND 6901 04:32:52,335 --> 04:32:57,240 SO HOW CAN WE MAYBE WORK THROUGH 6902 04:32:57,240 --> 04:32:59,242 THAT BY UNDERSTANDING LIVED 6903 04:32:59,242 --> 04:33:00,744 EXPERIENCE VERSUS REGULATORY 6904 04:33:00,744 --> 04:33:01,845 CONSTRAINTS WE COULD HAVE. 6905 04:33:01,845 --> 04:33:04,247 BUT THAT COMMUNICATION HAS TO BE 6906 04:33:04,247 --> 04:33:08,952 OFTEN, HAS TO BE OPEN, AND THERE 6907 04:33:08,952 --> 04:33:12,022 NEEDS TO BE AN INTENTIONAL 6908 04:33:12,022 --> 04:33:22,565 MECHANISM FOR FACILITATING THAT 6909 04:33:26,102 --> 04:33:27,570 KIND OF COMMUNICATION. 6910 04:33:27,570 --> 04:33:31,007 THIS IS INFANTS WITH PERINATAL 6911 04:33:31,007 --> 04:33:33,243 ARTERIAL ISCHEMIC STROKE, WE 6912 04:33:33,243 --> 04:33:35,045 HAVE A PARENT COUNCIL. 6913 04:33:35,045 --> 04:33:38,048 WHEN WE STARTED THEY WERE AN 6914 04:33:38,048 --> 04:33:42,218 ADVISORY COUNCIL. 6915 04:33:42,218 --> 04:33:44,387 SINCE THEN, WE HAVE INTEGRATED 6916 04:33:44,387 --> 04:33:48,124 THEM INTO THE STUDY MUCH MORE 6917 04:33:48,124 --> 04:33:50,627 INTENSIVELY AND INTENTIONALLY. 6918 04:33:50,627 --> 04:33:56,433 THIS IS A GROUP OF PARENTS OF 6919 04:33:56,433 --> 04:33:57,200 CHILDREN WITH DISABILITIES, AND 6920 04:33:57,200 --> 04:34:00,270 THEY HAVE INFORMED US HOW TO 6921 04:34:00,270 --> 04:34:04,307 RECRUIT AND TALK TO FAMILIES AND 6922 04:34:04,307 --> 04:34:05,408 WORK WITH FAMILIES. 6923 04:34:05,408 --> 04:34:08,044 THEY HAVE WORKED WITH THERAPISTS 6924 04:34:08,044 --> 04:34:13,416 AND ASSESSORS IN FAMILY 6925 04:34:13,416 --> 04:34:15,718 COMMUNICATION, THEY HAVE BUILT 6926 04:34:15,718 --> 04:34:16,786 RESOURCES FOR FAMILIES 6927 04:34:16,786 --> 04:34:18,421 PARTICIPATING IN THE STUDY, 6928 04:34:18,421 --> 04:34:19,422 UNDERSTANDING SOME BURDENS 6929 04:34:19,422 --> 04:34:22,826 ASSOCIATED WITH THINGS LIKE 6930 04:34:22,826 --> 04:34:25,161 TRAVEL, THEY PARTICIPATE IN OUR 6931 04:34:25,161 --> 04:34:29,566 EXECUTIVE STEERING COMMITTEE, ON 6932 04:34:29,566 --> 04:34:30,700 THE PUBLICATIONS COMMITTEE. 6933 04:34:30,700 --> 04:34:35,138 CO-PRESENTERS WHEN WE TALK ABOUT 6934 04:34:35,138 --> 04:34:35,939 THE TRIAL. 6935 04:34:35,939 --> 04:34:37,107 THEY ARE INVOLVED IN JUST ABOUT 6936 04:34:37,107 --> 04:34:42,846 EVERY STEP OF THE TRIAL. 6937 04:34:42,846 --> 04:34:44,080 AND HAVE BEEN ACTIVE 6938 04:34:44,080 --> 04:34:45,248 PARTICIPANTS, IN WAYS WE HAVEN'T 6939 04:34:45,248 --> 04:34:50,053 EVEN PANTS PATED WHEN WE 6940 04:34:50,053 --> 04:34:50,453 STARTED. 6941 04:34:50,453 --> 04:34:51,721 IT'S BEEN A LEARNING CURVE FOR 6942 04:34:51,721 --> 04:34:54,991 AWFUL US BUT WE'RE IN -- FOR ALL 6943 04:34:54,991 --> 04:34:56,726 OF US BUT WE'RE IN A TERRIFIC 6944 04:34:56,726 --> 04:34:59,496 PLACE AND THE TRIAL IS MORE 6945 04:34:59,496 --> 04:35:06,569 ENRICHED AND SUCCESSFUL BECAUSE 6946 04:35:06,569 --> 04:35:13,409 OF BECAUSE OF THEIR ACTIVE 6947 04:35:13,409 --> 04:35:17,013 PARTICIPATION. 6948 04:35:17,013 --> 04:35:17,881 ONE MINUTE OVER. 6949 04:35:17,881 --> 04:35:19,749 HOPEFULLY WE HAVE TIME FOR 6950 04:35:19,749 --> 04:35:20,016 QUESTIONS. 6951 04:35:20,016 --> 04:35:30,460 >> WE WILL OPEN IT UP FOR 6952 04:35:32,262 --> 04:35:32,795 COMMENTS, QUESTIONS. 6953 04:35:32,795 --> 04:35:37,133 >> I WENT ON YOUR WEBSITE 6954 04:35:37,133 --> 04:35:41,604 LOOKING FOR THE MINUTES OR VIDEO 6955 04:35:41,604 --> 04:35:43,139 OF THE CONFERENCE, IS IT THERE? 6956 04:35:43,139 --> 04:35:47,410 >> IT'S ON THE WEBSITE BUT WE 6957 04:35:47,410 --> 04:35:49,779 HAVE PEOPLE JOIN THE NETWORK, 6958 04:35:49,779 --> 04:35:56,286 YOU FILL OUT A FORM, SO ANYBODY 6959 04:35:56,286 --> 04:35:58,588 CAN JOIN. 6960 04:35:58,588 --> 04:36:00,123 WE'RE KEEPING -- MAKING SURE 6961 04:36:00,123 --> 04:36:01,457 WE'RE HITTING ALL THE 6962 04:36:01,457 --> 04:36:02,659 POPULATIONS WE NEED SO WE KEEP 6963 04:36:02,659 --> 04:36:09,832 TRACK OF WHO JOINS OUR NETWORK. 6964 04:36:09,832 --> 04:36:11,868 >> I WANT TO ECHO WHEN YOU BRING 6965 04:36:11,868 --> 04:36:14,170 THESE PEOPLE ON TO TREAT THEM 6966 04:36:14,170 --> 04:36:14,904 LIKE PROFESSIONALS, REIMBURSE 6967 04:36:14,904 --> 04:36:15,238 THEM. 6968 04:36:15,238 --> 04:36:18,107 IT'S OKAY WITH NIH. 6969 04:36:18,107 --> 04:36:20,276 WE'LL DEAL WITH THAT. 6970 04:36:20,276 --> 04:36:21,578 AND TO ACCOMMODATE THEM. 6971 04:36:21,578 --> 04:36:23,346 THEIR LIVES MAY BE MORE COMPLEX 6972 04:36:23,346 --> 04:36:23,880 THAN YOURS. 6973 04:36:23,880 --> 04:36:26,616 IF YOU TREAT THEM LIKE 6974 04:36:26,616 --> 04:36:28,117 PROFESSIONALS, YOU'LL GET THEIR 6975 04:36:28,117 --> 04:36:36,025 COMMITMENT TO WORK WITH YOU. 6976 04:36:36,025 --> 04:36:38,661 >> ONE THING WE DID AT AMERICAN 6977 04:36:38,661 --> 04:36:42,465 SOCIETY OF NEUROREHABILITATION 6978 04:36:42,465 --> 04:36:45,335 MEETING THIS PAST YEAR WE HAVE 6979 04:36:45,335 --> 04:36:48,171 NUMEROUS PEOPLE PARTICIPATING IN 6980 04:36:48,171 --> 04:36:49,372 RESEARCH AND THEIR CARETAKERS 6981 04:36:49,372 --> 04:36:51,774 AND FAMILY COME TO THE POSTER 6982 04:36:51,774 --> 04:36:52,008 SESSION. 6983 04:36:52,008 --> 04:36:54,410 IT WAS CROWDED BUT THEY GOT TO 6984 04:36:54,410 --> 04:36:56,579 SEE SOME OF THE RESEARCH GOING 6985 04:36:56,579 --> 04:36:58,681 ON BESIDES THE STUDIES THEY WERE 6986 04:36:58,681 --> 04:37:00,750 INVOLVED WITH, AND ALSO SEE 6987 04:37:00,750 --> 04:37:02,151 WHAT'S THE PROGRESS OF STUDIES 6988 04:37:02,151 --> 04:37:12,228 THEY WERE INVOLVED WITH AND THE 6989 04:37:12,228 --> 04:37:13,196 PEOPLE WERE THRILLED. 6990 04:37:13,196 --> 04:37:14,731 THERE'S MANY WAYS TO ENGAGE THE 6991 04:37:14,731 --> 04:37:19,802 COMMUNITY FROM CONCEPTION OF 6992 04:37:19,802 --> 04:37:20,937 IDEA TO IMPLEMENTATION. 6993 04:37:20,937 --> 04:37:25,041 THANKS FOR POSTING THE LINK. 6994 04:37:25,041 --> 04:37:30,880 >> THIS IS JOE BONNER, A PROGRAM 6995 04:37:30,880 --> 04:37:31,414 OFFICER. 6996 04:37:31,414 --> 04:37:35,218 AMY, WONDERING IF YOU COULD TALK 6997 04:37:35,218 --> 04:37:38,621 ABOUT HOW SOME INSTITUTIONS 6998 04:37:38,621 --> 04:37:41,791 PERSPECTIVE, WERE YOUR COUNCILS 6999 04:37:41,791 --> 04:37:43,026 BROUGHT ON AS PART-TIME 7000 04:37:43,026 --> 04:37:44,527 EMPLOYEES, HOW DID YOU DRAW THE 7001 04:37:44,527 --> 04:37:49,299 LINE TO MAKE THOSE DECISIONS? 7002 04:37:49,299 --> 04:37:51,868 >> SO, OUR COUNCIL MEMBERS ARE 7003 04:37:51,868 --> 04:37:53,836 PAID ANNUAL STIPEND. 7004 04:37:53,836 --> 04:37:57,740 IT'S A MULTI-INSTITUTION TRIAL 7005 04:37:57,740 --> 04:37:58,641 SO THE PRIME INSTITUTION 7006 04:37:58,641 --> 04:38:01,110 VIRGINIA TECH PAYS ALL THE 7007 04:38:01,110 --> 04:38:03,446 PARENTS OUT OF VIRGINIA TECH, 7008 04:38:03,446 --> 04:38:08,718 ALL PAID AS BASICALLY AN ANNUAL 7009 04:38:08,718 --> 04:38:10,253 STIPEND, ALL THE REIMBURSEMENTS 7010 04:38:10,253 --> 04:38:11,421 FOR CONFERENCES AND TRAVEL AND 7011 04:38:11,421 --> 04:38:13,823 THINGS LIKE THAT ARE PAID OUT OF 7012 04:38:13,823 --> 04:38:17,260 VIRGINIA TECH SO I THINK THEY 7013 04:38:17,260 --> 04:38:22,965 SUBMIT AN INVOICE AND SOME TAX 7014 04:38:22,965 --> 04:38:23,299 FORMS. 7015 04:38:23,299 --> 04:38:25,568 AND WE DON'T HIRE THEM AS 7016 04:38:25,568 --> 04:38:26,402 EMPLOYEES WITH THIS CURRENT 7017 04:38:26,402 --> 04:38:30,940 TRIAL BUT I DON'T KNOW THAT WE 7018 04:38:30,940 --> 04:38:31,641 COULDN'T. 7019 04:38:31,641 --> 04:38:34,010 >> COULD YOU DESCRIBE IT AS A 7020 04:38:34,010 --> 04:38:34,877 HEAVY LIFT? 7021 04:38:34,877 --> 04:38:41,784 >> IT WAS STRAIGHTFORWARD, I 7022 04:38:41,784 --> 04:38:43,419 WOULD SAY. 7023 04:38:43,419 --> 04:38:44,454 THAT'S BEEN A STRAIGHTFORWARD 7024 04:38:44,454 --> 04:38:45,822 PROCESS FOR US. 7025 04:38:45,822 --> 04:38:50,893 THEY ARE COMING IN ALMOST LIKE 7026 04:38:50,893 --> 04:38:52,829 INDEPENDENT CONTRACTORS, SO 7027 04:38:52,829 --> 04:38:58,968 PAID -- IT'S LIKE BEING PAID AN 7028 04:38:58,968 --> 04:38:59,736 HONORARIUM, RIGHT? 7029 04:38:59,736 --> 04:39:02,672 I SIGH THAT BECAUSE I'M AT OHIO 7030 04:39:02,672 --> 04:39:04,841 STATE, AND VIRGINIA TECH IS 7031 04:39:04,841 --> 04:39:06,843 PAYING THEM. 7032 04:39:06,843 --> 04:39:08,678 TO SAY IT'S REALLY EASY. 7033 04:39:08,678 --> 04:39:16,018 >> JOE KNOWS IT'S EASY TO GET 7034 04:39:16,018 --> 04:39:16,986 PAID, RIGHT, JOE? 7035 04:39:16,986 --> 04:39:21,391 >> OTHER QUESTIONS? 7036 04:39:21,391 --> 04:39:21,657 COMMENTS? 7037 04:39:21,657 --> 04:39:27,296 >> SO I MEAN WE KNOW THAT 7038 04:39:27,296 --> 04:39:32,101 INVOLVING FAMILY AND PEOPLE WITH 7039 04:39:32,101 --> 04:39:33,202 LIVED EXPERIENCES NOT 7040 04:39:33,202 --> 04:39:34,737 NECESSARILY EASY THING. 7041 04:39:34,737 --> 04:39:38,674 IF YOU COULD -- WHAT YOU 7042 04:39:38,674 --> 04:39:39,976 DESCRIBE, AMY, WAS ESSENTIALLY 7043 04:39:39,976 --> 04:39:42,612 I'M SURE DIDN'T COME UP 7044 04:39:42,612 --> 04:39:45,882 OVERNIGHT IN TERMS OF WHAT YOU 7045 04:39:45,882 --> 04:39:47,216 UNFOLDED AND WHAT YOU'RE DOING 7046 04:39:47,216 --> 04:39:48,851 WITH THIS CLINICAL TRIAL. 7047 04:39:48,851 --> 04:39:50,953 I WANTED TO ASK IF YOU COULD 7048 04:39:50,953 --> 04:39:52,221 REFLECT WHEN YOU BEGAN TO DO 7049 04:39:52,221 --> 04:39:55,091 THIS WHAT WERE SOME INITIAL 7050 04:39:55,091 --> 04:39:57,059 STEPS YOU TOOK TO GET TO THIS 7051 04:39:57,059 --> 04:40:04,500 POINT NOW WHERE YOU ACTUALLY 7052 04:40:04,500 --> 04:40:09,238 HAVE THIS AWESOME ADVISORY 7053 04:40:09,238 --> 04:40:09,472 COUNCIL. 7054 04:40:09,472 --> 04:40:16,446 >> SO I THINK ONE OF THE MOST 7055 04:40:16,446 --> 04:40:18,448 EFFECTIVE STRATEGIES WE USED WAS 7056 04:40:18,448 --> 04:40:19,749 COMMUNICATION REGULAR MEETING 7057 04:40:19,749 --> 04:40:20,183 TIME. 7058 04:40:20,183 --> 04:40:22,485 WE HAVE TIME SET ASIDE 7059 04:40:22,485 --> 04:40:22,985 CONSISTENT. 7060 04:40:22,985 --> 04:40:27,490 RIGHT NOW ONCE A MONTH BUT 7061 04:40:27,490 --> 04:40:30,593 INITIALLY WE SET UP SEVERAL 7062 04:40:30,593 --> 04:40:33,529 STRUCTURED TIMES TO GET TOGETHER 7063 04:40:33,529 --> 04:40:36,699 WITH CARES OF THE PARENT 7064 04:40:36,699 --> 04:40:37,800 COUNCIL, RECRUITING PARENTS, WE 7065 04:40:37,800 --> 04:40:42,038 HAD A MEETING THAT WAS A HYBRID 7066 04:40:42,038 --> 04:40:43,372 MEETING. 7067 04:40:43,372 --> 04:40:47,243 WE HAD THE PARENT COUNCIL CHAIRS 7068 04:40:47,243 --> 04:40:49,145 ATTEND OUR P.I. KICKOFF MEETING 7069 04:40:49,145 --> 04:40:53,416 FOR THE TRIAL WHERE WE BROUGHT 7070 04:40:53,416 --> 04:40:55,618 EVERYBODY INTO ONE SPACE AND 7071 04:40:55,618 --> 04:40:58,254 REALLY TALKED ABOUT STANDARD 7072 04:40:58,254 --> 04:41:00,223 OPERATING PROCEDURES, REVIEWED 7073 04:41:00,223 --> 04:41:02,391 THE TRIAL AND ALL THE THINGS YOU 7074 04:41:02,391 --> 04:41:02,625 DO. 7075 04:41:02,625 --> 04:41:10,366 THE PARENTS WERE PART OF THAT. 7076 04:41:10,366 --> 04:41:12,034 THE PARENTS GAVE A PRESENTATION 7077 04:41:12,034 --> 04:41:13,236 ABOUT THEIR ROLE AND HOW THEY 7078 04:41:13,236 --> 04:41:15,171 WOULD BE REACHING OUT TO 7079 04:41:15,171 --> 04:41:17,840 INVESTIGATORS. 7080 04:41:17,840 --> 04:41:21,777 I THINK WE SOCIALIZED EARLY 7081 04:41:21,777 --> 04:41:23,980 INTENTIONALLY, IN A STRUCTURED 7082 04:41:23,980 --> 04:41:24,347 WAY. 7083 04:41:24,347 --> 04:41:29,652 OUR CO-CHAIRS FOR THE PARENT 7084 04:41:29,652 --> 04:41:30,119 COUNCIL HAVE ROTATED. 7085 04:41:30,119 --> 04:41:33,256 BUT AT THE TIME AND NOW WERE 7086 04:41:33,256 --> 04:41:34,657 FABULOUS SO THEY WERE VERY 7087 04:41:34,657 --> 04:41:36,125 COMFORTABLE GETTING UP IN FRONT 7088 04:41:36,125 --> 04:41:40,263 OF A ROOM OF SCIENTISTS AND 7089 04:41:40,263 --> 04:41:44,333 SAYING THIS IS WHO WE ARE AND 7090 04:41:44,333 --> 04:41:46,602 WHY WE'RE HERE. 7091 04:41:46,602 --> 04:41:49,539 THEY HAVE ROLES AND 7092 04:41:49,539 --> 04:41:50,573 RESPONSIBILITIES, WE DISTRICTED 7093 04:41:50,573 --> 04:41:51,974 THAT AS WELL. 7094 04:41:51,974 --> 04:41:54,944 I GUESS IT GOES BACK TO LOTS OF 7095 04:41:54,944 --> 04:42:01,050 COMMUNICATION THAT WAS PRETTY 7096 04:42:01,050 --> 04:42:01,350 INTENTIONAL. 7097 04:42:01,350 --> 04:42:04,253 >> FOLLOW QUESTION, TO BEGIN 7098 04:42:04,253 --> 04:42:05,254 DIALOGUE, SO THIS FAMILY COUNCIL 7099 04:42:05,254 --> 04:42:06,856 BEFORE THEY BECAME A PART OF 7100 04:42:06,856 --> 04:42:08,391 YOUR GRANT ALREADY EXISTED OR 7101 04:42:08,391 --> 04:42:11,027 YOU WENT OUT AND CURATED THE 7102 04:42:11,027 --> 04:42:13,329 GROUP OF PARENTS THAT YOU'RE 7103 04:42:13,329 --> 04:42:14,864 WORKING WITH, THE FAMILY MEMBERS 7104 04:42:14,864 --> 04:42:18,034 YOU'RE WORKING WITH IN THESE 7105 04:42:18,034 --> 04:42:18,701 DELIBERATE STRUCTURED DIALOGUES, 7106 04:42:18,701 --> 04:42:20,770 I WANTED TO CLARIFY THAT. 7107 04:42:20,770 --> 04:42:23,739 >> YEAH, NO, SO WE HAD A PARENT 7108 04:42:23,739 --> 04:42:27,343 WHO HAD BEEN INVOLVED WITH THE 7109 04:42:27,343 --> 04:42:30,980 GRANT WRITING, WHO WAS -- WHO 7110 04:42:30,980 --> 04:42:32,081 THE PARENT COUNCIL WAS INCLUDED 7111 04:42:32,081 --> 04:42:33,382 IN THE GRANT AND SHE WAS 7112 04:42:33,382 --> 04:42:34,717 INVOLVED IN TALKING THROUGH WHAT 7113 04:42:34,717 --> 04:42:36,752 THAT MIGHT LOOK LIKE, WROTE A 7114 04:42:36,752 --> 04:42:38,421 LETTER OF SUPPORT, SO SHE SERVED 7115 04:42:38,421 --> 04:42:42,258 AS ONE OF THE INITIAL CO-CHAIRS. 7116 04:42:42,258 --> 04:42:44,360 WE RECRUITED ANOTHER CO-CHAIR 7117 04:42:44,360 --> 04:42:46,529 AND THEN FROM THERE THEY WORKED 7118 04:42:46,529 --> 04:42:48,297 WITH ALL OF OUR SITES, SITES 7119 04:42:48,297 --> 04:42:49,699 AROUND THE COUNTRY FOR THE 7120 04:42:49,699 --> 04:42:52,768 WHILE, AND HAD THE SITES TRY AND 7121 04:42:52,768 --> 04:42:54,637 NOMINATE FAMILIES THAT THEY KNEW 7122 04:42:54,637 --> 04:42:56,839 OF WHO MIGHT BE INTERESTED, AND 7123 04:42:56,839 --> 04:43:00,009 SORT OF DID A WORD OF MOUTH 7124 04:43:00,009 --> 04:43:02,411 AFTER THAT AS WELL TO TRY AND 7125 04:43:02,411 --> 04:43:04,580 RECRUIT. 7126 04:43:04,580 --> 04:43:05,915 I WOULD SAY INITIALLY QUITE 7127 04:43:05,915 --> 04:43:11,253 INTENTIONAL BUT GREW FROM THERE 7128 04:43:11,253 --> 04:43:13,789 AND WE TRUSTED THAT THE COUNCIL 7129 04:43:13,789 --> 04:43:16,392 WOULD RECRUIT THE FAMILY MEMBERS 7130 04:43:16,392 --> 04:43:20,796 THEY FELT WOULD BE BEST FOR THAT 7131 04:43:20,796 --> 04:43:26,702 ROLE SO WE LARGELY STAYED OUT OF 7132 04:43:26,702 --> 04:43:31,841 THAT PROCESS AND WE WERE 7133 04:43:31,841 --> 04:43:32,141 CONSULTANTS. 7134 04:43:32,141 --> 04:43:34,143 >> THANK YOU AGAIN FOR A VERY 7135 04:43:34,143 --> 04:43:34,777 GREAT DISCUSSION. 7136 04:43:34,777 --> 04:43:36,646 WE'RE GOING TO TAKE A BREAK HERE 7137 04:43:36,646 --> 04:43:44,954 AND PICK BACK UP AT 3:30. 7138 04:43:44,954 --> 04:43:47,690 >> THANKS TO RICK AND AMY. 7139 04:43:47,690 --> 04:43:48,658 >> THANKS. 7140 04:43:48,658 --> 04:43:59,881 I'M GOING TO NORTH CAROLINA. 7141 04:43:59,881 --> 04:44:06,388 WE'LL GET STARTED WITH THE 7142 04:44:06,388 --> 04:44:07,222 AFTERNOON SESSION. 7143 04:44:07,222 --> 04:44:12,260 >> IT'S MY HONOR TO INTRODUCE A 7144 04:44:12,260 --> 04:44:13,929 COLLEAGUE AND FRIEND, PATRICIA 7145 04:44:13,929 --> 04:44:19,167 DORN, A DIRECTOR OF REHAB 7146 04:44:19,167 --> 04:44:21,169 RESEARCH AT THE DEPARTMENT OF 7147 04:44:21,169 --> 04:44:22,938 VETERANS AFFAIRS, AN 7148 04:44:22,938 --> 04:44:25,307 AUDIOLOGIST, HEARING SCIENTIST 7149 04:44:25,307 --> 04:44:27,509 BY TRAINING, MAINTAINS 7150 04:44:27,509 --> 04:44:29,578 CERTIFICATION IN THAT, AND SHE'S 7151 04:44:29,578 --> 04:44:30,545 GOING TO TELL US ABOUT 7152 04:44:30,545 --> 04:44:33,181 ACTIVITIES AT THE V.A. CENTER 7153 04:44:33,181 --> 04:44:34,950 AND TREMENDOUS SYNERGY THAT HAS 7154 04:44:34,950 --> 04:44:38,220 WITH WHAT WE'RE DOING, A GREAT 7155 04:44:38,220 --> 04:44:40,522 CHANCE TO DO RESEARCH IN SUPPORT 7156 04:44:40,522 --> 04:44:43,525 OF OUR VETERANS. 7157 04:44:43,525 --> 04:44:43,925 TRISH? 7158 04:44:43,925 --> 04:44:44,192 >> GREAT. 7159 04:44:44,192 --> 04:44:45,560 THANK YOU. 7160 04:44:45,560 --> 04:44:48,830 I'M REALLY EXCITED TO ADD TO 7161 04:44:48,830 --> 04:44:51,032 YOUR KNOWLEDGE ABOUT THE V.A., 7162 04:44:51,032 --> 04:44:54,202 ABOUT THE RESEARCH PROGRAM, AND 7163 04:44:54,202 --> 04:44:56,071 SPECIFICALLY ABOUT THE REHAB 7164 04:44:56,071 --> 04:44:57,572 RESEARCH AND DEVELOPMENT 7165 04:44:57,572 --> 04:44:59,474 HAPPENING THERE. 7166 04:44:59,474 --> 04:45:04,713 THIS IS REALLY AN OVERARCHING 7167 04:45:04,713 --> 04:45:08,316 SLIDE THAT TELLS THE BIG PICTURE 7168 04:45:08,316 --> 04:45:08,550 STORY. 7169 04:45:08,550 --> 04:45:09,851 THERE'S BEEN A RESEARCH PROGRAM 7170 04:45:09,851 --> 04:45:16,425 IN V.A. FOR VETERANS IN ONE FORM 7171 04:45:16,425 --> 04:45:18,760 OR ANOTHER FOR ALMOST 100 YEARS, 7172 04:45:18,760 --> 04:45:21,797 AND THAT'S INSCRIBED ON THE MAIN 7173 04:45:21,797 --> 04:45:25,500 BUILDING, THE QUOTE BY ABE 7174 04:45:25,500 --> 04:45:26,935 LINCOLN, 810 VERMONT AVENUE AND 7175 04:45:26,935 --> 04:45:29,237 SOME OF THE OTHER V.A. 7176 04:45:29,237 --> 04:45:31,573 FACILITIES AROUND THE COUNTRY. 7177 04:45:31,573 --> 04:45:33,275 SO, DOING RESEARCH IN THE V.A. 7178 04:45:33,275 --> 04:45:35,143 THAT MEANS YOU'RE SERVING THOSE 7179 04:45:35,143 --> 04:45:37,012 WHO HAVE SERVED THE NATION AND 7180 04:45:37,012 --> 04:45:39,314 IN V.A. WHAT WE DO WITH RESEARCH 7181 04:45:39,314 --> 04:45:41,383 IS DISCOVER KNOWLEDGE, WORK IN A 7182 04:45:41,383 --> 04:45:43,485 PRE-CLINICAL ALL THE WAY THROUGH 7183 04:45:43,485 --> 04:45:45,754 HEALTH SERVICES SYSTEM LEVEL 7184 04:45:45,754 --> 04:45:47,322 SPACE, WITH THE INNOVATIONS 7185 04:45:47,322 --> 04:45:49,191 CREATED AND THAT'S TO ADVANCE 7186 04:45:49,191 --> 04:45:52,461 HEALTH CARE OF VETERANS AND THE 7187 04:45:52,461 --> 04:45:53,228 NATION. 7188 04:45:53,228 --> 04:45:56,198 WE HAVE A ROBUST INTRAMURAL 7189 04:45:56,198 --> 04:45:57,732 RESEARCH PROGRAM TO DEVELOP 7190 04:45:57,732 --> 04:45:59,901 CLINICIAN RESEARCHERS, HEALTH 7191 04:45:59,901 --> 04:46:03,038 CARE LEADERS, AND V.A. PROVIDES 7192 04:46:03,038 --> 04:46:05,173 A LIFETIME OF CARE FOR THE 7193 04:46:05,173 --> 04:46:08,076 VETERANS, THE ENTIRE RESEARCH 7194 04:46:08,076 --> 04:46:10,745 PIPELINE THERE. 7195 04:46:10,745 --> 04:46:14,416 THIS IS A STREAMLINED VIEW OF 7196 04:46:14,416 --> 04:46:19,054 THE AGENCY, BUT A GOOD IDEA TO 7197 04:46:19,054 --> 04:46:20,255 KNOW WHERE THE RESEARCH PROGRAM 7198 04:46:20,255 --> 04:46:21,122 LIVES IN V.A. 7199 04:46:21,122 --> 04:46:23,325 THERE'S THE SECRETARY OF THE 7200 04:46:23,325 --> 04:46:26,294 AGENCY, THREE MAIN SECTIONS TO 7201 04:46:26,294 --> 04:46:29,231 V.A., BENEFITS ADMINISTRATION, 7202 04:46:29,231 --> 04:46:35,804 SO THAT'S WHERE THE DISABILITY 7203 04:46:35,804 --> 04:46:38,640 BENEFITS, VOCATIONAL REHAB 7204 04:46:38,640 --> 04:46:41,276 OCCUR, NATIONAL CEMETERY 7205 04:46:41,276 --> 04:46:42,677 ADMINISTRATION, CEMETERIES, 7206 04:46:42,677 --> 04:46:44,246 BURIALS, MAINTENANCE, AND VHA 7207 04:46:44,246 --> 04:46:49,684 THAT CAN HELP IN ADMINISTRATION, 7208 04:46:49,684 --> 04:46:51,353 THE UNDERSECRETARY FOR HEALTH, 7209 04:46:51,353 --> 04:46:54,956 OFFICE OF THE DEAN, DISCOVERY 7210 04:46:54,956 --> 04:46:55,957 AFFILIATION NETWORKS, BELOW THAT 7211 04:46:55,957 --> 04:46:57,792 IS OFFICE OF RESEARCH AND 7212 04:46:57,792 --> 04:47:02,564 DEVELOPMENT WHERE THE RESEARCH 7213 04:47:02,564 --> 04:47:04,833 PROGRAMS AND RESEARCH SERVICES 7214 04:47:04,833 --> 04:47:06,902 EXIST, GIVING YOU A SENSE OF 7215 04:47:06,902 --> 04:47:11,306 WHAT THE STRUCTURE LOOKS LIKE, 7216 04:47:11,306 --> 04:47:13,041 SUPER STREAMLINED. 7217 04:47:13,041 --> 04:47:15,911 SO V.A., WELL, WE ARE THE 7218 04:47:15,911 --> 04:47:17,178 LARGEST INTEGRATED HEALTH CARE 7219 04:47:17,178 --> 04:47:19,047 SYSTEM THAT EXISTS IN THE 7220 04:47:19,047 --> 04:47:23,318 COUNTRY TO SERVE THOSE WHO HAVE 7221 04:47:23,318 --> 04:47:24,452 SERVED, OVER 9 MILLION VETERANS 7222 04:47:24,452 --> 04:47:26,054 COME FOR CARE. 7223 04:47:26,054 --> 04:47:30,659 WE HAVE HUNDREDS OF THOUSANDS OF 7224 04:47:30,659 --> 04:47:32,294 CLINICAL FOLKS, THERE'S OVER 150 7225 04:47:32,294 --> 04:47:35,797 MEDICAL CENTERS THROUGHOUT THE 7226 04:47:35,797 --> 04:47:37,232 COUNTRY. 7227 04:47:37,232 --> 04:47:39,234 THERE IS ADVANCED ELECTRONIC 7228 04:47:39,234 --> 04:47:41,836 HEALTH CARE RECORD, AND THIS 7229 04:47:41,836 --> 04:47:43,705 RECORD, VETERAN CAN GO INTO ANY 7230 04:47:43,705 --> 04:47:45,140 FACILITY AND GET CARE IF THEY 7231 04:47:45,140 --> 04:47:46,207 ARE TRAVELING AROUND THE 7232 04:47:46,207 --> 04:47:48,510 COUNTRY, THE RECORD IS 7233 04:47:48,510 --> 04:47:49,277 AVAILABLE, CLINICIAN WHO SEES 7234 04:47:49,277 --> 04:47:51,713 THEM WILL KNOW WHAT'S GOING ON 7235 04:47:51,713 --> 04:47:55,283 WITH THEIR FELT STATUS. 7236 04:47:55,283 --> 04:47:57,686 AND THAT RECORD SERVES -- IS A 7237 04:47:57,686 --> 04:48:00,422 GREAT SOURCE FOR SETTING UP 7238 04:48:00,422 --> 04:48:01,723 STUDIES UNDERSTANDING THE 7239 04:48:01,723 --> 04:48:02,624 POPULATION THAT'S OUT THERE FOR 7240 04:48:02,624 --> 04:48:06,227 THE RESEARCH OF INTEREST. 7241 04:48:06,227 --> 04:48:08,330 THE ACADEMIC AFFILIATE NETWORKS, 7242 04:48:08,330 --> 04:48:09,864 ALL THESE ARE AFFILIATED LOCALLY 7243 04:48:09,864 --> 04:48:11,499 WITH MEDICAL CENTER, WITH THE 7244 04:48:11,499 --> 04:48:12,634 UNIVERSITIES. 7245 04:48:12,634 --> 04:48:16,871 AND THIS IS A VERY STRONG 7246 04:48:16,871 --> 04:48:17,172 AFFILIATION. 7247 04:48:17,172 --> 04:48:22,677 WE ARE A TRAINING GROUND FOR THE 7248 04:48:22,677 --> 04:48:27,315 MAJORITY OF CLINICIANS, 7249 04:48:27,315 --> 04:48:28,283 INTERNSHIPS, RESIDENCIES, AT 7250 04:48:28,283 --> 04:48:29,684 SOME POINT MOST HAVE SERVED 7251 04:48:29,684 --> 04:48:31,219 VETERANS THAT WAY. 7252 04:48:31,219 --> 04:48:36,391 THE MILLION VETERAN PROGRAM IS 7253 04:48:36,391 --> 04:48:38,560 THE WORLD'S LARGEST 7254 04:48:38,560 --> 04:48:39,094 BIOREPOSITORY. 7255 04:48:39,094 --> 04:48:40,295 BEFORE VETERANS DAY THIS PAST 7256 04:48:40,295 --> 04:48:42,163 NOVEMBER 11 THEY DID HIT A 7257 04:48:42,163 --> 04:48:46,434 MILLION IN THERE, INTO THE 7258 04:48:46,434 --> 04:48:46,968 DATABASE. 7259 04:48:46,968 --> 04:48:50,839 THEY DID HIT A MILLION WHICH IS 7260 04:48:50,839 --> 04:48:51,373 HUGE. 7261 04:48:51,373 --> 04:48:55,310 THERE IS A PROCESS IN PLACE FOR 7262 04:48:55,310 --> 04:48:59,914 INVESTIGATORS TO SEEK USE OF, 7263 04:48:59,914 --> 04:49:03,718 QUERIES MVP DATABASE SO IT'S A 7264 04:49:03,718 --> 04:49:05,053 FABULOUS RESOURCE. 7265 04:49:05,053 --> 04:49:06,454 TECHNOLOGY TRANSFER PROGRAM 7266 04:49:06,454 --> 04:49:08,223 THAT'S ALSO VERY ROBUST ASPECT, 7267 04:49:08,223 --> 04:49:13,028 THE P.I.s, INVESTIGATORS IN 7268 04:49:13,028 --> 04:49:15,430 V.A., THE TTP PROGRAM WORKS WITH 7269 04:49:15,430 --> 04:49:17,198 THEM, THEY NEED TO MAKE 7270 04:49:17,198 --> 04:49:18,733 DISCLOSURES TO PROTECT THEIR 7271 04:49:18,733 --> 04:49:19,734 INTELLECTUAL PROPERTY, IF 7272 04:49:19,734 --> 04:49:21,569 THERE'S ANY DEVELOPMENT OFF OF 7273 04:49:21,569 --> 04:49:24,406 THIS ANY PRODUCTS THAT GET OUT, 7274 04:49:24,406 --> 04:49:25,740 THERE'S ROYALTY SHARING PLANS 7275 04:49:25,740 --> 04:49:30,345 THAT GO TO THE INVESTIGATOR, TO 7276 04:49:30,345 --> 04:49:36,251 THE FACILITY, AND TTP HELPS WITH 7277 04:49:36,251 --> 04:49:37,118 COMMERCIALIZATION, PART OF 7278 04:49:37,118 --> 04:49:38,987 TRANSLATION TO MOVE THINGS 7279 04:49:38,987 --> 04:49:42,724 ALONG. 7280 04:49:42,724 --> 04:49:46,194 NOW, THE V.A. 7281 04:49:46,194 --> 04:49:48,363 THE BUDGET WAS $916 MILLION, 7282 04:49:48,363 --> 04:49:50,965 UNDER C.R., DEDICATED FOR 7283 04:49:50,965 --> 04:49:57,972 VETERANS NEEDS TO DO THE 7284 04:49:57,972 --> 04:50:01,076 RESEARCH FOR VETERANS IN THE 7285 04:50:01,076 --> 04:50:01,409 FACILITIES. 7286 04:50:01,409 --> 04:50:04,946 THAT'S CALLED THE MEDICAL AND 7287 04:50:04,946 --> 04:50:05,513 PROSTHETICS RESEARCH 7288 04:50:05,513 --> 04:50:10,518 APPROPRIATION THAT'S A SPECIFIC 7289 04:50:10,518 --> 04:50:12,053 NAME FROM CONGRESS, WE'RE 7290 04:50:12,053 --> 04:50:13,154 DATABASE RICH, MACHINE LEARNING, 7291 04:50:13,154 --> 04:50:16,758 A.I., ALL OF THAT GREAT 7292 04:50:16,758 --> 04:50:18,727 RESOURCES. 7293 04:50:18,727 --> 04:50:22,330 IN TERMS OF PRIORITIES, ORD 7294 04:50:22,330 --> 04:50:23,531 PRIORITIES, THERE'S STRATEGIC 7295 04:50:23,531 --> 04:50:26,701 ONES, CLINICAL ONES, IT'S ABOUT 7296 04:50:26,701 --> 04:50:28,970 GETTING VETERANS INTO TRIALS, 7297 04:50:28,970 --> 04:50:30,739 MAKING THAT REAL WORLD IMPACT 7298 04:50:30,739 --> 04:50:33,808 REALLY HAPPEN, MAKING THE DATA 7299 04:50:33,808 --> 04:50:35,243 WORK, D.E.I. EFFORTS WHICH I'LL 7300 04:50:35,243 --> 04:50:38,413 TELL YOU MORE ABOUT SOON. 7301 04:50:38,413 --> 04:50:39,814 WHAT I THINK IS STRENGTHENING 7302 04:50:39,814 --> 04:50:44,085 AND ADDING TO WHAT IS ALREADY A 7303 04:50:44,085 --> 04:50:45,186 STRONG COMMUNITY THAT HAPPENS IN 7304 04:50:45,186 --> 04:50:47,655 THE V.A. RESEARCH COMMUNITY. 7305 04:50:47,655 --> 04:50:52,927 CLINICAL PRIORITIES, SUICIDE 7306 04:50:52,927 --> 04:50:54,496 PREVENTION, SUICIDE PREVENTION, 7307 04:50:54,496 --> 04:50:55,363 PRECISION ONCOLOGY, COVID-19, 7308 04:50:55,363 --> 04:50:57,532 YOU PROBABLY COULD HAVE LISTED 7309 04:50:57,532 --> 04:50:58,967 THIS YOURSELF BY LISTENING TO 7310 04:50:58,967 --> 04:51:01,136 THE NEWS AND WHAT'S OF INTEREST 7311 04:51:01,136 --> 04:51:05,540 TO THE WHITE HOUSE CONGRESS, 7312 04:51:05,540 --> 04:51:05,974 STAKEHOLDERS, OTHER 7313 04:51:05,974 --> 04:51:07,609 STAKEHOLDERS, VETERANS, VETERANS 7314 04:51:07,609 --> 04:51:08,543 SERVICES ORGANIZATIONS. 7315 04:51:08,543 --> 04:51:17,719 THAT IS WHERE THESE COME FROM. 7316 04:51:17,719 --> 04:51:19,254 DIVERSITY, EQUITY, AND INCLUSION 7317 04:51:19,254 --> 04:51:20,421 EFFORTS, JULY 2020 A WORKING 7318 04:51:20,421 --> 04:51:24,259 GROUP WAS STOOD UP IN ORD, TO 7319 04:51:24,259 --> 04:51:26,227 PROTECT D.E.I. WITHIN ORD, 7320 04:51:26,227 --> 04:51:29,731 WITHIN THE STAFF AS WELL AS WITH 7321 04:51:29,731 --> 04:51:31,266 THE RESEARCHERS OUT THERE, AND 7322 04:51:31,266 --> 04:51:33,868 TO BUILD A PIPELINE TO GET EARLY 7323 04:51:33,868 --> 04:51:41,309 CAREER INVESTIGATORS IN FROM 7324 04:51:41,309 --> 04:51:42,410 UNDERREPRESENTED POPULATIONS, TO 7325 04:51:42,410 --> 04:51:43,745 STRENGTHEN EQUITY AND 7326 04:51:43,745 --> 04:51:48,650 PARTNERSHIP WITH OFFERSES, 7327 04:51:48,650 --> 04:51:49,117 ACADEMIC INSTITUTIONS, 7328 04:51:49,117 --> 04:51:50,185 STAKEHOLDER ENGAGEMENT BOARD. 7329 04:51:50,185 --> 04:51:53,888 THE GROUP HAS BEEN BUSY 7330 04:51:53,888 --> 04:51:55,089 CONDUCTING WORKSHOPS, SEMINARS, 7331 04:51:55,089 --> 04:51:57,192 REVIEWER TRAINING, FOR PEOPLE 7332 04:51:57,192 --> 04:51:58,626 FROM DIVERSE BACKGROUNDS, 7333 04:51:58,626 --> 04:52:01,229 TOUCHING ON THE IMPLICIT BIAS, 7334 04:52:01,229 --> 04:52:03,097 THEY HAVE ESTABLISHED SOME 7335 04:52:03,097 --> 04:52:04,933 RECRUITMENT SITES, CONNECTION 7336 04:52:04,933 --> 04:52:09,204 WITH MOREHOUSE AND ATLANTA V.A., 7337 04:52:09,204 --> 04:52:11,206 FOR OUTREACH TO HBCUs, A 7338 04:52:11,206 --> 04:52:12,941 SUMMER RESEARCH PROGRAM AT ABOUT 7339 04:52:12,941 --> 04:52:18,079 20 V.A.s, WHERE THE EARLY 7340 04:52:18,079 --> 04:52:20,615 UNDERGRADS CAN GET A COUPLE 7341 04:52:20,615 --> 04:52:22,350 MONTHS OF EXPERIENCE, TRAINING, 7342 04:52:22,350 --> 04:52:23,785 HOPEFULLY THE SPARK HAPPENS AND 7343 04:52:23,785 --> 04:52:26,654 THEY WANT TO KEEP GOING. 7344 04:52:26,654 --> 04:52:27,856 THE RESEARCH SUPPLEMENTS TO 7345 04:52:27,856 --> 04:52:30,491 PROMOTE DIVERSITY, THAT IS 7346 04:52:30,491 --> 04:52:32,994 ADDING MONEY TO THE 7347 04:52:32,994 --> 04:52:35,730 INVESTIGATORS FUNDED STUDIES TO 7348 04:52:35,730 --> 04:52:36,731 BRING IN UNDERREPRESENTED EARLY 7349 04:52:36,731 --> 04:52:38,166 CAREER WITH THE EXTENT THOSE 7350 04:52:38,166 --> 04:52:40,101 FOLKS ARE GOING TO MAKE 7351 04:52:40,101 --> 04:52:42,070 APPLICATIONS TO OUR CAREER 7352 04:52:42,070 --> 04:52:43,905 DEVELOPMENT AWARD PROGRAM, AND 7353 04:52:43,905 --> 04:52:46,341 THE OTHER SUPPLEMENT, THIS IS 7354 04:52:46,341 --> 04:52:48,142 ADDING DOLLARS TO V.A. 7355 04:52:48,142 --> 04:52:49,911 INVESTIGATORS FOR THEIR STUDIES 7356 04:52:49,911 --> 04:52:54,048 TO HAVE CONNECTIONS AND 7357 04:52:54,048 --> 04:52:56,351 PARTNERSHIPS WITH RESEARCHERS AT 7358 04:52:56,351 --> 04:52:57,185 MINORITY-SERVING INSTITUTIONS 7359 04:52:57,185 --> 04:52:59,654 AND REALLY TO FORM THOSE 7360 04:52:59,654 --> 04:53:01,089 CONNECTIONS AND THAT'S WITH 7361 04:53:01,089 --> 04:53:08,529 FOLKS AT DIFFERENT LEVEL OF 7362 04:53:08,529 --> 04:53:11,065 THEIR CAREER. 7363 04:53:11,065 --> 04:53:15,436 NOW GETTING MORE SPECIFIC ABOUT 7364 04:53:15,436 --> 04:53:16,871 REHAPPEN PROGRAM, I'LL MAKE 7365 04:53:16,871 --> 04:53:18,506 BRIEF COMMENTS, SO YOU MAY HAVE 7366 04:53:18,506 --> 04:53:20,341 HEARD OR KNOW, YES, IT'S TRUE 7367 04:53:20,341 --> 04:53:22,210 THAT VA OFFICE OF RESEARCH AND 7368 04:53:22,210 --> 04:53:25,046 DEVELOPMENT IS GOING UNDER -- 7369 04:53:25,046 --> 04:53:26,681 UNDER RESOURCE, IT'S IN PROCESS, 7370 04:53:26,681 --> 04:53:27,782 NOT COMPLETE, THAT'S WHY YOU 7371 04:53:27,782 --> 04:53:33,154 WON'T SEE ME SHOWING YOU SLIDES 7372 04:53:33,154 --> 04:53:34,889 BECAUSE IT'S NOT DONE BUT THE 7373 04:53:34,889 --> 04:53:36,424 MAIN TAKEAWAY POINT IS THAT 7374 04:53:36,424 --> 04:53:39,661 REGARDLESS OF HOW WE DO ORGANIZE 7375 04:53:39,661 --> 04:53:42,230 OURSELVES DOWNSTREAM, AS I SAID, 7376 04:53:42,230 --> 04:53:44,299 THIS PROGRAM IS ALMOST 100 YEARS 7377 04:53:44,299 --> 04:53:46,401 OLD, AND SO IT'S VERY STRONG, 7378 04:53:46,401 --> 04:53:50,772 IT'S RESILIENT AND THE MISSION 7379 04:53:50,772 --> 04:53:51,873 DOESN'T CHANGE TO IMPROVE HEALTH 7380 04:53:51,873 --> 04:53:53,041 AND LIVES OF VETERANS. 7381 04:53:53,041 --> 04:53:54,575 NEED TO HAVE RESEARCHERS DO THE 7382 04:53:54,575 --> 04:53:58,746 RESEARCH IN DIFFERENT AREAS AND 7383 04:53:58,746 --> 04:54:00,181 DOMAINS THAT DOESN'T CHANGE, 7384 04:54:00,181 --> 04:54:04,085 THAT'S THE MESSAGE I'M TELLING 7385 04:54:04,085 --> 04:54:04,886 INVESTIGATORS AND TELLING 7386 04:54:04,886 --> 04:54:06,521 EVERYBODY TO KEEP YOUR EYE ON 7387 04:54:06,521 --> 04:54:08,389 THE BALL ABOUT IMPROVING LIVES, 7388 04:54:08,389 --> 04:54:18,933 HEALTH OF VETERANS, AND KEEP THE 7389 04:54:24,639 --> 04:54:28,209 RESEARCH COMING IN, THAT'S ABOUT 7390 04:54:28,209 --> 04:54:29,310 FUNCTIONAL IMPROVEMENT, 7391 04:54:29,310 --> 04:54:29,911 INDEPENDENCE, VETERAN GETTING 7392 04:54:29,911 --> 04:54:31,379 BACK TO THE LIFE WHATEVER THEY 7393 04:54:31,379 --> 04:54:38,052 WANT TO HAVE IN THEIR LIFE OR 7394 04:54:38,052 --> 04:54:41,322 BRING BACK, THAT'S THE CORE. 7395 04:54:41,322 --> 04:54:43,624 THE RESEARCH, WE DO FUND 7396 04:54:43,624 --> 04:54:47,362 PRE-CLINICAL THROUGH A DOORSTEP 7397 04:54:47,362 --> 04:54:50,098 OF HEALTH SERVICES RESEARCH, 7398 04:54:50,098 --> 04:54:51,265 VERY BIG ROBUST PROGRAM. 7399 04:54:51,265 --> 04:54:54,435 THEY NEED TO BE THINKING ABOUT 7400 04:54:54,435 --> 04:55:02,643 FUNCTIONAL OUTCOMES, RESEARCH 7401 04:55:02,643 --> 04:55:04,412 THEY ARE DOING, WHAT IS THIS 7402 04:55:04,412 --> 04:55:09,484 GOING TO DO FOR THE VETERAN, 7403 04:55:09,484 --> 04:55:10,852 STEPS TO GET TO THE VETERAN, 7404 04:55:10,852 --> 04:55:12,286 THEY NEED TO THINK IT ALL THE 7405 04:55:12,286 --> 04:55:15,590 WAY THROUGH BECAUSE THAT'S WHAT 7406 04:55:15,590 --> 04:55:19,627 THIS PROGRAM IS ABOUT. 7407 04:55:19,627 --> 04:55:21,929 AND WE THINK ABOUT REHAPPEN 7408 04:55:21,929 --> 04:55:25,666 RESEARCH, KEEP IN MIND VETERANS 7409 04:55:25,666 --> 04:55:28,269 MAY EXPERIENCE DISABILITY VIA 7410 04:55:28,269 --> 04:55:29,704 DEPLOYMENT, FITNESS FOR DUTY, 7411 04:55:29,704 --> 04:55:31,105 ILLNESS OR INJURY AFTER THEY 7412 04:55:31,105 --> 04:55:33,041 HAVE COME INTO MILITARY SERVICE, 7413 04:55:33,041 --> 04:55:34,909 OR WHEN THEY ARE A VETERAN. 7414 04:55:34,909 --> 04:55:36,711 THOSE ARE THE POINTS AT WHICH 7415 04:55:36,711 --> 04:55:40,548 THEY MAP MAY EXPERIENCE AND HAVE 7416 04:55:40,548 --> 04:55:42,283 DISABILITIES OCCURRING. 7417 04:55:42,283 --> 04:55:45,119 SO THE RESEARCH IT MAY RESTORE 7418 04:55:45,119 --> 04:55:46,554 FUNCTION OR SEEK THROUGH THE 7419 04:55:46,554 --> 04:55:50,258 RESEARCH TO RESTORE FUNCTION IF 7420 04:55:50,258 --> 04:55:52,460 POSSIBLE, OR REPLACE THROUGH 7421 04:55:52,460 --> 04:55:53,761 TECHNOLOGY, THROUGH DEVICES, 7422 04:55:53,761 --> 04:55:55,730 THROUGH OTHER INTERVENTIONS, BUT 7423 04:55:55,730 --> 04:55:57,265 THE BOTTOM LINE IT'S RETURNING 7424 04:55:57,265 --> 04:55:59,333 THE VETERAN WITH THE DISABLING 7425 04:55:59,333 --> 04:56:02,303 CONDITION TO AS FULL A LIFE AND 7426 04:56:02,303 --> 04:56:05,907 INTEGRATED INTO THEIR LIFE AND 7427 04:56:05,907 --> 04:56:09,944 THEIR COMMUNITY AS POSSIBLE. 7428 04:56:09,944 --> 04:56:13,681 AND THIS IS THE BREADTH, IT'S A 7429 04:56:13,681 --> 04:56:15,883 MULTIPURPOSE SLIDE, THE BREAD 7430 04:56:15,883 --> 04:56:20,488 THERE -- BREADTH OF THE PROGRAM 7431 04:56:20,488 --> 04:56:22,356 AND THE TEAM, THE PEOPLE ARE 7432 04:56:22,356 --> 04:56:25,526 WHAT MAKES IT HAPPEN. 7433 04:56:25,526 --> 04:56:27,595 AND SO WE -- REMEMBER WITH THESE 7434 04:56:27,595 --> 04:56:30,431 PROGRAMS, BY THE WAY, WE KNOW 7435 04:56:30,431 --> 04:56:31,866 RESEARCH IS NOT -- RESEARCHERS 7436 04:56:31,866 --> 04:56:33,468 COME IN WITH IDEAS AND WANT TO 7437 04:56:33,468 --> 04:56:36,037 WORK IN AREAS THAT ARE NOT 7438 04:56:36,037 --> 04:56:38,973 SITTING IN THE BOX. 7439 04:56:38,973 --> 04:56:40,842 THERE'S TBI WITH LOOKING AT 7440 04:56:40,842 --> 04:56:42,343 MENTAL HEALTH INTERVENTION OR 7441 04:56:42,343 --> 04:56:44,112 SENSORY, SO WE MAKE A BEST FIT 7442 04:56:44,112 --> 04:56:45,546 FOR THAT ARE APPLICATION WHEN IT 7443 04:56:45,546 --> 04:56:47,415 COMES IN. 7444 04:56:47,415 --> 04:56:48,683 SO WE HAVE MUSCULOSKELETAL 7445 04:56:48,683 --> 04:56:56,390 HEALTH AND FUNCTION WITH DR. 7446 04:56:56,390 --> 04:56:56,891 BRINDLE, REHABILITATION 7447 04:56:56,891 --> 04:57:00,528 INTERFERING, CHRONIC MEDICAL 7448 04:57:00,528 --> 04:57:05,133 CONDITION AND AGING, SOCIAL 7449 04:57:05,133 --> 04:57:07,435 REINTEGRATION AND SCID PAIN 7450 04:57:07,435 --> 04:57:10,071 REJERCH RATION, BRAIN HEALTH AND 7451 04:57:10,071 --> 04:57:12,240 INJURY WITH DR. PACIFICO, AND 7452 04:57:12,240 --> 04:57:13,774 COVERING THE CAREER DEVELOPMENT 7453 04:57:13,774 --> 04:57:17,178 CAREER SCIENTIST I'LL TELL YOU 7454 04:57:17,178 --> 04:57:22,083 MORE ABOUT CENTERS IS DR. 7455 04:57:22,083 --> 04:57:26,687 BROWER, THERE'S MYSELF, THE 7456 04:57:26,687 --> 04:57:29,957 DIRECTOR, THE DEPUTY, 7457 04:57:29,957 --> 04:57:35,963 ADMINISTRATIVE OFFICER, THE PARS 7458 04:57:35,963 --> 04:57:41,002 GROUP, ADMINISTRATOR, AND 7459 04:57:41,002 --> 04:57:44,105 MANAGEMENT ANALYST, PROGRAM 7460 04:57:44,105 --> 04:57:45,606 SPECIALISTS, AND PROGRAM 7461 04:57:45,606 --> 04:57:45,840 ANALYST. 7462 04:57:45,840 --> 04:57:48,576 WE WORK SOUP TO NUTS. 7463 04:57:48,576 --> 04:57:52,046 WE DO THE DEVELOPMENT, GENERATE 7464 04:57:52,046 --> 04:57:53,347 RFAs, POST THEM, DO SCIENTIFIC 7465 04:57:53,347 --> 04:57:55,116 PEER REVIEW. 7466 04:57:55,116 --> 04:57:57,752 WE USE THE ERA SYSTEM TO DO THIS 7467 04:57:57,752 --> 04:58:00,054 THROUGH A CONTRACT WITH OUR 7468 04:58:00,054 --> 04:58:00,855 FORMS. 7469 04:58:00,855 --> 04:58:03,658 WE DO THE FUNDING, FUNDING 7470 04:58:03,658 --> 04:58:04,859 DECISIONS, OVERSIGHT, THE WHOLE 7471 04:58:04,859 --> 04:58:05,092 CYCLE. 7472 04:58:05,092 --> 04:58:08,129 THESE ARE THE PEOPLE INVOLVED IN 7473 04:58:08,129 --> 04:58:10,565 MAKING THAT WHOLE PROCESS AND 7474 04:58:10,565 --> 04:58:14,068 THE WHOLE CYCLE WORK. 7475 04:58:14,068 --> 04:58:15,069 AND THERE'S AN ASSISTANT TO ME 7476 04:58:15,069 --> 04:58:22,843 AND DOES OTHER THINGS FOR US. 7477 04:58:22,843 --> 04:58:24,145 AND OUR R&D. 7478 04:58:24,145 --> 04:58:27,548 IN ADDITION TO UNDER THE REGULAR 7479 04:58:27,548 --> 04:58:29,050 PARENT RFAs RECEIVING 7480 04:58:29,050 --> 04:58:30,151 APPLICATIONS IN THOSE BROAD 7481 04:58:30,151 --> 04:58:32,553 PROGRAM AREAS, WHICH WE HAVE 7482 04:58:32,553 --> 04:58:35,489 PURVIEW STATEMENTS ABOUT, WE 7483 04:58:35,489 --> 04:58:39,794 ALSO HAVE SPECIAL EMPHASIS IN 7484 04:58:39,794 --> 04:58:42,196 PRIORITY AREAS, SOME ARE 7485 04:58:42,196 --> 04:58:43,064 TRICKLEDOWN FROM BROADER 7486 04:58:43,064 --> 04:58:46,267 PRIORITIES AT THE TOP WITH ORD, 7487 04:58:46,267 --> 04:58:48,236 BUT IT'S ALL DONE, ALL THIS WORK 7488 04:58:48,236 --> 04:58:54,008 IS DONE WITHIN THE CONTEXT OF 7489 04:58:54,008 --> 04:58:54,942 REHABILITATION FUNCTION 7490 04:58:54,942 --> 04:58:55,576 OUTCOMES, PATIENT CENTERED, ALL 7491 04:58:55,576 --> 04:58:56,744 OF THAT. 7492 04:58:56,744 --> 04:58:58,813 THEY DO GET UPDATED, PRIORITY 7493 04:58:58,813 --> 04:59:02,216 AREAS GET UPDATED, AS THE NEEDS 7494 04:59:02,216 --> 04:59:03,451 OF VETERANS ARISE, STAKEHOLDER 7495 04:59:03,451 --> 04:59:04,952 INTEREST, THINGS LIKE THAT. 7496 04:59:04,952 --> 04:59:11,759 SO, WE HAVE WHAT'S CALLED THIS 7497 04:59:11,759 --> 04:59:12,860 DRIVE, DURABILITY, REHAB 7498 04:59:12,860 --> 04:59:13,194 INTERVENTIONS. 7499 04:59:13,194 --> 04:59:16,464 I HEARD TALKING TODAY ABOUT THE 7500 04:59:16,464 --> 04:59:18,199 IDEA WE HAVE INTERVENTIONS BUT 7501 04:59:18,199 --> 04:59:22,169 WHO IS DOING THEM, FOR HOW LONG, 7502 04:59:22,169 --> 04:59:23,237 IS THE EFFECT -- HOW LONG DOES 7503 04:59:23,237 --> 04:59:24,772 THAT LAST AND HOW LONG DO PEOPLE 7504 04:59:24,772 --> 04:59:26,540 STAY WITH IT. 7505 04:59:26,540 --> 04:59:28,276 WE'RE TRYING TO -- WE'RE GETTING 7506 04:59:28,276 --> 04:59:32,346 THE FIELD INTERESTED IN LOOKING 7507 04:59:32,346 --> 04:59:33,981 AT ESTABLISHED INTERVENTIONS 7508 04:59:33,981 --> 04:59:34,682 WITHIN APPROPRIATE ADJUNCT 7509 04:59:34,682 --> 04:59:37,918 APPROACH TO SEE ABOUT ADHERENCE, 7510 04:59:37,918 --> 04:59:40,354 LONG-TERM BENEFITS. 7511 04:59:40,354 --> 04:59:43,524 THIS RFA ALLOWS FOR A LONGER 7512 04:59:43,524 --> 04:59:45,259 AMOUNT OF TIME, FIVE OR SIX YEAR 7513 04:59:45,259 --> 04:59:46,560 PERIOD, HIGHER AMOUNT OF MONEY 7514 04:59:46,560 --> 04:59:50,398 BECAUSE YOU NEED TO DO SOME 7515 04:59:50,398 --> 04:59:51,399 LONG-TERM FOLLOW-UP. 7516 04:59:51,399 --> 04:59:52,900 WITHIN THE PARENT RFA WE'RE 7517 04:59:52,900 --> 04:59:55,770 LOOKING, THIS HAS COME UP OVER 7518 04:59:55,770 --> 04:59:57,204 AND OVER, HEALTH DISPARITIES, 7519 04:59:57,204 --> 04:59:59,273 BIG ISSUE, BIG AREA. 7520 04:59:59,273 --> 05:00:04,845 WE'RE VERY COMMITTED TO THAT. 7521 05:00:04,845 --> 05:00:07,448 THIS IS UNDERSTANDING SEVERITY, 7522 05:00:07,448 --> 05:00:08,883 DURATION, PROSTHETIC, OTHER 7523 05:00:08,883 --> 05:00:11,819 TECHNOLOGY NEEDS OF WOMEN 7524 05:00:11,819 --> 05:00:12,086 VETERANS. 7525 05:00:12,086 --> 05:00:13,187 SUICIDE PREVENTION ABOUT 7526 05:00:13,187 --> 05:00:16,190 PARTICIPATION IN LIFE CONTROLS, 7527 05:00:16,190 --> 05:00:21,829 IMPACT OF COVID-19, A LONG HAUL 7528 05:00:21,829 --> 05:00:24,799 CONTEXT, EXPOSURE TO OPIOIDS 7529 05:00:24,799 --> 05:00:27,501 LONG-TERM OUTCOMES FROM TBI, 7530 05:00:27,501 --> 05:00:28,703 ALSO AT TECHNOLOGY-BASED 7531 05:00:28,703 --> 05:00:31,972 INTERVENTION SO STIMULATION, 7532 05:00:31,972 --> 05:00:34,842 THINGS LIKE THAT, CHRONIC PAIN 7533 05:00:34,842 --> 05:00:37,712 CONDITIONS, LOOKING AT COMBINING 7534 05:00:37,712 --> 05:00:39,680 DATA-DRIVEN APPROACHES, COMMON 7535 05:00:39,680 --> 05:00:43,517 DATA ELEMENTS, CDEs TO LOOK AT 7536 05:00:43,517 --> 05:00:45,486 MEASURE, IMPROVE, VALIDATE 7537 05:00:45,486 --> 05:00:48,356 INTERVENTIONS FOR TBI, EFFECTS 7538 05:00:48,356 --> 05:00:49,423 OF BLAST, NOISE, MULTI-SENSORY 7539 05:00:49,423 --> 05:00:50,858 CHRONIC CONDITIONS AND WE'VE 7540 05:00:50,858 --> 05:00:54,795 ADDED MORE RECENTLY THESE 7541 05:00:54,795 --> 05:00:56,330 TRANSLATIONAL REHAB RESEARCH 7542 05:00:56,330 --> 05:01:00,401 AWARDS, TRRA 1 AND 2s, ONE IS 7543 05:01:00,401 --> 05:01:04,338 PLANNING, 2 IS TESTING, TO HELP 7544 05:01:04,338 --> 05:01:06,173 MOVE WORK ALONG THAT REQUIRES 7545 05:01:06,173 --> 05:01:09,477 FDA INVOLVEMENT AND SO IT'S TO 7546 05:01:09,477 --> 05:01:10,544 PROVIDE SOME ASSISTANCE THERE 7547 05:01:10,544 --> 05:01:11,979 WHEN WE HAVE INVESTIGATORS WHO 7548 05:01:11,979 --> 05:01:16,584 ARE AT THAT STAGE WITH THE WORK 7549 05:01:16,584 --> 05:01:21,522 THAT THEY ARE DOING. 7550 05:01:21,522 --> 05:01:21,722 OKAY. 7551 05:01:21,722 --> 05:01:25,659 SO, WE AS I SAID, THIS IS 7552 05:01:25,659 --> 05:01:28,162 INTRAMURAL PROGRAMS, SO HOW DOES 7553 05:01:28,162 --> 05:01:29,397 THIS WORK WITH ELIGIBILITY AND 7554 05:01:29,397 --> 05:01:30,364 ALL THAT? 7555 05:01:30,364 --> 05:01:36,070 YOU HEAR ABOUT THIS SYSTEM, THE 7556 05:01:36,070 --> 05:01:41,108 INVESTIGATOR, P.I., CO-P.I., 7557 05:01:41,108 --> 05:01:41,942 SALARY DEPLOYMENT WHEN FUNDED, 7558 05:01:41,942 --> 05:01:44,044 PEOPLE WITH COME IN ON 7559 05:01:44,044 --> 05:01:45,045 PROMISSORY, IF FUNDED I'LL TAKE 7560 05:01:45,045 --> 05:01:48,315 THE V.A. APPOINTMENT AND WE HAVE 7561 05:01:48,315 --> 05:01:50,184 THE LETTER FROM THE MEDICAL 7562 05:01:50,184 --> 05:01:53,154 CENTER IN THERE. 7563 05:01:53,154 --> 05:01:56,991 AND IT'S IMPORTANT THAT YOU CAN 7564 05:01:56,991 --> 05:01:59,927 CONNECT, WE WANT TO CONNECT YOU 7565 05:01:59,927 --> 05:02:00,828 WITH PROGRAM MANAGERS, 7566 05:02:00,828 --> 05:02:01,262 COLLEAGUES. 7567 05:02:01,262 --> 05:02:02,563 EVERYTHING IS THE RESEARCH 7568 05:02:02,563 --> 05:02:04,098 OFFICE AT THE FACILITY, WHERE IT 7569 05:02:04,098 --> 05:02:05,499 HAPPENS, WHERE EVERYTHING GETS 7570 05:02:05,499 --> 05:02:07,601 SUBMITTED, AND THAT'S WHERE THE 7571 05:02:07,601 --> 05:02:10,004 FRONTLINE OF OVERSIGHT ACTUALLY 7572 05:02:10,004 --> 05:02:11,439 HAPPENS. 7573 05:02:11,439 --> 05:02:12,206 U.S. CITIZEN ELIGIBILITY, 7574 05:02:12,206 --> 05:02:14,708 GETTING HIRED INTO THE V.A., 7575 05:02:14,708 --> 05:02:16,177 THAT'S FEDERAL EMPLOYMENT. 7576 05:02:16,177 --> 05:02:19,113 SO THERE YOU GO. 7577 05:02:19,113 --> 05:02:20,314 AND RFAs, YOU CAN'T LOOK FOR 7578 05:02:20,314 --> 05:02:20,881 THEM. 7579 05:02:20,881 --> 05:02:24,685 THEY ARE ON THE INTRANET BECAUSE 7580 05:02:24,685 --> 05:02:25,686 IT'S AN INTRAMURAL PROGRAM, WE 7581 05:02:25,686 --> 05:02:27,621 NEED TO GET YOU CONNECTED SO YOU 7582 05:02:27,621 --> 05:02:29,824 CAN SEE WHAT'S GOING ON THERE. 7583 05:02:29,824 --> 05:02:31,358 LIKE I SAID EVERYTHING COMES 7584 05:02:31,358 --> 05:02:33,794 THROUGH THE RESEARCH OFFICE. 7585 05:02:33,794 --> 05:02:35,629 THAT'S WHY WE NEED TO GET YOU 7586 05:02:35,629 --> 05:02:35,896 CONNECTED. 7587 05:02:35,896 --> 05:02:36,931 PEOPLE IN THAT SLIDE BEFORE, 7588 05:02:36,931 --> 05:02:38,532 THEY ARE HAPPY TO HEAR FROM YOU 7589 05:02:38,532 --> 05:02:41,202 AND HAPPY TO HELP YOU OUT. 7590 05:02:41,202 --> 05:02:43,504 AND IT'S A MATTER OF JUST 7591 05:02:43,504 --> 05:02:44,505 DETERMINING WHAT'S THE AWARD 7592 05:02:44,505 --> 05:02:45,706 MECHANISM WHICH I'LL TELL YOU 7593 05:02:45,706 --> 05:02:47,241 ABOUT IS BEST FOR THE 7594 05:02:47,241 --> 05:02:48,776 RESEARCHERS, FOR THE WORK THEY 7595 05:02:48,776 --> 05:02:50,644 ARE DOING AND THE STAGE THEY ARE 7596 05:02:50,644 --> 05:02:50,811 AT. 7597 05:02:50,811 --> 05:02:54,682 AGAIN, IT HAS TO BE VETERAN 7598 05:02:54,682 --> 05:02:55,883 RELEVANT CONDUCTED IN V.A. SPACE 7599 05:02:55,883 --> 05:03:02,656 AND WE EVALUATE FOR THE VETERAN 7600 05:03:02,656 --> 05:03:03,624 RELEVANCE. 7601 05:03:03,624 --> 05:03:05,726 BY THE WAY, THE PICTURES ARE 7602 05:03:05,726 --> 05:03:06,293 SANCTIONED. 7603 05:03:06,293 --> 05:03:08,596 THEY ALL SHOW UP ALL OVER THE 7604 05:03:08,596 --> 05:03:09,029 PLACE. 7605 05:03:09,029 --> 05:03:12,032 SO THEY ARE ALL GOOD TO GO. 7606 05:03:12,032 --> 05:03:13,100 ALL RIGHT. 7607 05:03:13,100 --> 05:03:15,603 THE AWARDS THAT WE HAVE, I'M 7608 05:03:15,603 --> 05:03:18,772 CALLING THEM AWARDS BECAUSE OUR 7609 05:03:18,772 --> 05:03:20,174 APPROPRIATION IS NOT FOR 7610 05:03:20,174 --> 05:03:20,741 GRANTING. 7611 05:03:20,741 --> 05:03:22,276 WE DON'T HAVE GRANTING 7612 05:03:22,276 --> 05:03:22,743 AUTHORITY. 7613 05:03:22,743 --> 05:03:24,879 PEOPLE CALL THEM GRANTS, I KNOW 7614 05:03:24,879 --> 05:03:27,414 WHAT YOU MEAN, BUT OKAY. 7615 05:03:27,414 --> 05:03:30,885 WE HAVE CAREER DEVELOPMENT 7616 05:03:30,885 --> 05:03:33,954 PROGRAM, CDAs, TWO LEVELS 7617 05:03:33,954 --> 05:03:35,956 WITHIN TWO YEARS OF TRAINING AND 7618 05:03:35,956 --> 05:03:37,224 FIVE YEARS OF TRAINING. 7619 05:03:37,224 --> 05:03:39,326 YES, AN INDIVIDUAL CAN IN FACT 7620 05:03:39,326 --> 05:03:41,529 BE INVOLVED IN POTENTIALLY SEVEN 7621 05:03:41,529 --> 05:03:43,797 YEARS OF TRAINING THROUGH CDA 1 7622 05:03:43,797 --> 05:03:47,201 AND CDA 2. 7623 05:03:47,201 --> 05:03:50,037 YOU CAN COME IN AT 2 7624 05:03:50,037 --> 05:03:50,571 FOR MINORITY-SERVING 7625 05:03:50,571 --> 05:03:53,874 INSTITUTIONS SAME PARAMETERS AT 7626 05:03:53,874 --> 05:03:55,609 CDA2, TO ENCOURAGE AND HAVE 7627 05:03:55,609 --> 05:03:57,144 UNDERREPRESENTED INDIVIDUALS GET 7628 05:03:57,144 --> 05:04:04,718 ON BOARD AND BE PART OF THE 7629 05:04:04,718 --> 05:04:04,952 PROGRAM. 7630 05:04:04,952 --> 05:04:07,221 THE SMALL PROJECTS, THIS IS 7631 05:04:07,221 --> 05:04:09,089 GREAT, ONE TO TWO YEARS, THE 7632 05:04:09,089 --> 05:04:09,423 SPIRE. 7633 05:04:09,423 --> 05:04:10,824 YOU DON'T HAVE TO HAVE A SCRAP 7634 05:04:10,824 --> 05:04:12,459 OF DATA. 7635 05:04:12,459 --> 05:04:15,329 THE POINT IS YOU NEED DATA, COME 7636 05:04:15,329 --> 05:04:16,964 ON IN, LOOK FOR FEASIBILITY, 7637 05:04:16,964 --> 05:04:20,067 COME ON IN, BECAUSE THE IDEA IF 7638 05:04:20,067 --> 05:04:21,802 SUCCESSFUL, DEPENDING ON WHAT 7639 05:04:21,802 --> 05:04:23,537 YOU LEARN, YOU GO FORWARD AND 7640 05:04:23,537 --> 05:04:25,506 SUBMIT A MERIT AWARD AND DO A 7641 05:04:25,506 --> 05:04:28,242 LARGER PROJECT. 7642 05:04:28,242 --> 05:04:31,211 THOSE SPIREs ARE SET UP SUCH 7643 05:04:31,211 --> 05:04:33,180 THAT PREFERENCE IS FOR EARLY 7644 05:04:33,180 --> 05:04:33,948 CAREER. 7645 05:04:33,948 --> 05:04:36,650 SO WE ALWAYS LOOK AT THE STATUS 7646 05:04:36,650 --> 05:04:38,319 AND ROBUSTNESS OF THE EARLY 7647 05:04:38,319 --> 05:04:39,954 CAREER AWARDS AND THOSE PEOPLE 7648 05:04:39,954 --> 05:04:41,388 GET FUNDED AND GET IN LINE IN 7649 05:04:41,388 --> 05:04:44,224 FRONT OF THE FOLKS WHO ARE 7650 05:04:44,224 --> 05:04:44,558 ESTABLISHED. 7651 05:04:44,558 --> 05:04:46,627 THAT'S HOW IT WORKS. 7652 05:04:46,627 --> 05:04:49,797 THE MERIT, THAT'S LIKE THE R01, 7653 05:04:49,797 --> 05:04:51,231 BREAD AND BUTTER AWARD, FOUR 7654 05:04:51,231 --> 05:04:53,000 YEARS, FULL STUDIES. 7655 05:04:53,000 --> 05:04:54,735 WE HAVE RESEARCH CAREER 7656 05:04:54,735 --> 05:04:55,035 SCIENTISTS. 7657 05:04:55,035 --> 05:04:57,471 THIS IS REALLY A SALARY AWARD, 7658 05:04:57,471 --> 05:05:00,307 IT GOES TO INDIVIDUALS WHO HAVE 7659 05:05:00,307 --> 05:05:01,642 AND SUSTAIN AND CONTINUE TO 7660 05:05:01,642 --> 05:05:05,112 REALLY HIT ALL THE MARKS ON 7661 05:05:05,112 --> 05:05:06,780 RESEARCH AND MENTORSHIP AND 7662 05:05:06,780 --> 05:05:07,348 SERVICE. 7663 05:05:07,348 --> 05:05:11,852 AND ALL OF THAT. 7664 05:05:11,852 --> 05:05:13,587 WE HAVE RESEARCH ENHANCEMENT 7665 05:05:13,587 --> 05:05:15,556 AWARD PROGRAMS AND CENTERS, 7666 05:05:15,556 --> 05:05:17,758 THOSE ARE COLLECTIVES OF 7667 05:05:17,758 --> 05:05:19,493 RESEARCHERS UNDER A PARTICULAR 7668 05:05:19,493 --> 05:05:22,997 MISSION TO MEET PARTICULAR GOALS 7669 05:05:22,997 --> 05:05:24,098 WITHIN FIVE-YEAR CYCLES. 7670 05:05:24,098 --> 05:05:26,400 I'LL TELL YOU MORE ABOUT THOSE. 7671 05:05:26,400 --> 05:05:28,602 AND NOT MUCH ON SERVICE DIRECTED 7672 05:05:28,602 --> 05:05:30,337 BUT IT CAN HAPPEN. 7673 05:05:30,337 --> 05:05:33,540 SO THE RFAs ARE ON THE 7674 05:05:33,540 --> 05:05:33,974 INTRANET. 7675 05:05:33,974 --> 05:05:35,676 YOU NEED TO PONY UP OR COME GET 7676 05:05:35,676 --> 05:05:42,383 UP WITH THE V.A. PERSON TO SEE 7677 05:05:42,383 --> 05:05:42,750 THOSE. 7678 05:05:42,750 --> 05:05:45,586 YOU CAN SEE THE STUDIES IN 7679 05:05:45,586 --> 05:05:47,554 REPORTER, SEARCH BY AGENCIES AS 7680 05:05:47,554 --> 05:05:48,956 WELL AS clinicaltrials.gov SO 7681 05:05:48,956 --> 05:05:53,560 YOU CAN SEE EVERYTHING THERE. 7682 05:05:53,560 --> 05:05:54,328 ALL RIGHT. 7683 05:05:54,328 --> 05:05:59,500 SO, WHAT DOES THIS LOOK LIKE FY 7684 05:05:59,500 --> 05:06:03,737 23 THE AWARD PROGRAM YOU'LL SEE 7685 05:06:03,737 --> 05:06:07,341 571 ACTIVE AWARDS, THAT WAS WITH 7686 05:06:07,341 --> 05:06:09,877 ABOUT $112 MILLION IN DIRECT 7687 05:06:09,877 --> 05:06:13,280 DOLLARS APPORTIONED OVER TO R&D 7688 05:06:13,280 --> 05:06:15,983 TO CONDUCT ITS BUSINESS. 7689 05:06:15,983 --> 05:06:19,086 YOU'LL SEE THE MAJORITY OF THE 7690 05:06:19,086 --> 05:06:21,689 AWARDS ARE SITTING IN CHRONIC 7691 05:06:21,689 --> 05:06:23,624 MEDICAL CONDITIONS AND AGING, AS 7692 05:06:23,624 --> 05:06:26,493 WELL AS BRAIN HEALTH AND INJURY, 7693 05:06:26,493 --> 05:06:29,363 TBI AND STROKE, AND BEHAVIOR 7694 05:06:29,363 --> 05:06:33,333 HEALTH AND SOCIAL REINTEGRATION. 7695 05:06:33,333 --> 05:06:34,868 MOST VETERANS ARE OLDER, IN 7696 05:06:34,868 --> 05:06:37,037 THEIR 70s, THE BOLUS OF THE 7697 05:06:37,037 --> 05:06:40,874 VETERANS WE SERVE RIGHT NOW. 7698 05:06:40,874 --> 05:06:43,610 TBI IS THE SIGNATURE INJURY FROM 7699 05:06:43,610 --> 05:06:45,279 THE CONFLICTS, AND THERE'S ALSO 7700 05:06:45,279 --> 05:06:47,347 STROKE IN THAT PROGRAM. 7701 05:06:47,347 --> 05:06:48,982 AND THE BEHAVIORAL HEALTH, THE 7702 05:06:48,982 --> 05:06:51,285 MAJORITY OF THE WORK IN THERE IS 7703 05:06:51,285 --> 05:06:55,222 PTSD WHICH ALSO HAS TIES TO 7704 05:06:55,222 --> 05:06:57,524 CURRENT CONFLICT SO THOSE 7705 05:06:57,524 --> 05:06:59,593 NUMBERS ARE NOT SO SURPRISING TO 7706 05:06:59,593 --> 05:07:03,097 ME THAT THE PROGRAM IS ROUNDED 7707 05:07:03,097 --> 05:07:06,166 OUT CURRENTLY THAT WAY. 7708 05:07:06,166 --> 05:07:07,935 AND THE OTHER THING JUST, AGAIN, 7709 05:07:07,935 --> 05:07:10,237 THE BEST FIT INTO THE PROGRAM, 7710 05:07:10,237 --> 05:07:12,840 BUT TO POINT OUT WHEN THE WORK 7711 05:07:12,840 --> 05:07:15,576 YOU HEARD HERE THAT AS AGENCIES 7712 05:07:15,576 --> 05:07:17,111 WE COLLABORATE, WE WORK 7713 05:07:17,111 --> 05:07:19,613 TOGETHER, WE KNOW THAT MAKING 7714 05:07:19,613 --> 05:07:21,715 THE DISCOVERIES IN DIFFERENT 7715 05:07:21,715 --> 05:07:22,816 AREAS, DIFFERENT TECHNOLOGIES, 7716 05:07:22,816 --> 05:07:25,652 THAT IT TAKES A LOT OF MONEY AND 7717 05:07:25,652 --> 05:07:27,621 EFFORT SO OUR INVESTIGATORS WILL 7718 05:07:27,621 --> 05:07:30,357 AT TIMES BE FUNDED BY NIH, 7719 05:07:30,357 --> 05:07:33,293 DoD, AS IT MAKES SENSE TO 7720 05:07:33,293 --> 05:07:34,828 ADVANCE THE SCIENCE ALONG. 7721 05:07:34,828 --> 05:07:38,232 AND I SHOULD SAY MOST OF OUR 7722 05:07:38,232 --> 05:07:40,067 INVESTIGATORS ALSO ARE DUAL 7723 05:07:40,067 --> 05:07:41,101 APPOINTEES SO THEY HAVE AN 7724 05:07:41,101 --> 05:07:44,037 APPOINTMENT AT THE V.A. AND THEY 7725 05:07:44,037 --> 05:07:46,473 HAVE AN ACADEMIC AFFILIATE 7726 05:07:46,473 --> 05:07:46,974 APPOINTMENT. 7727 05:07:46,974 --> 05:07:50,711 AND THAT'S A USUAL, NOT UNUSUAL, 7728 05:07:50,711 --> 05:07:51,545 SITUATION. 7729 05:07:51,545 --> 05:07:54,348 AND THEN LOOKING BY AWARD TYPE, 7730 05:07:54,348 --> 05:07:56,517 THE MERIT LIKE YOUR R01 THE 7731 05:07:56,517 --> 05:07:58,285 BREAD AND BUTTER AWARD, THAT'S 7732 05:07:58,285 --> 05:07:59,686 THE AWARD WHEN WE TALK TO 7733 05:07:59,686 --> 05:08:00,554 INVESTIGATORS AND THE FIELD 7734 05:08:00,554 --> 05:08:02,756 THAT'S THE ONE THEY WANT 7735 05:08:02,756 --> 05:08:05,192 MAINTAINED AT THE HIGHEST LEVEL 7736 05:08:05,192 --> 05:08:05,659 POSSIBLE. 7737 05:08:05,659 --> 05:08:09,530 THEN WE HAVE THE SMALL PROJECTS, 7738 05:08:09,530 --> 05:08:15,469 SPIREs, THIS PAST FISCAL YEAR, 7739 05:08:15,469 --> 05:08:19,506 139 INTENDED TO BECOME MERIT 7740 05:08:19,506 --> 05:08:23,143 APPLICATIONS, CDA1 AND CDA2, 7741 05:08:23,143 --> 05:08:27,815 THAT'S ABOUT 19, 20%, ONE-FIFTH 7742 05:08:27,815 --> 05:08:30,684 OF OUR AWARDS GOING TO CAREER 7743 05:08:30,684 --> 05:08:32,653 DEVELOPMENT, BECAUSE OF THE 7744 05:08:32,653 --> 05:08:34,621 PREFERENCE TO EARLY CAREER 7745 05:08:34,621 --> 05:08:35,856 FOLKS, AND THEN CAREER 7746 05:08:35,856 --> 05:08:39,259 SCIENTISTS, THAT'S A SMALLER 7747 05:08:39,259 --> 05:08:42,563 PROGRAM, AND THEN THE CENTERS, 7748 05:08:42,563 --> 05:08:44,832 THERE'S 14 OF THOSE. 7749 05:08:44,832 --> 05:08:47,701 AND THIS IS A MAP YOU CAN SEE 7750 05:08:47,701 --> 05:08:51,104 WITH THE PURPLE SHADED STATES. 7751 05:08:51,104 --> 05:08:57,644 WE HAVE RESEARCH IN OVER 60 V.A. 7752 05:08:57,644 --> 05:08:59,313 MCs, REHAB RESEARCH WHERE THEY 7753 05:08:59,313 --> 05:09:01,381 ARE SORTED OUT ACROSS THE 7754 05:09:01,381 --> 05:09:02,149 COUNTRY. 7755 05:09:02,149 --> 05:09:04,651 WE HAVE THESE CENTERS, WHICH 7756 05:09:04,651 --> 05:09:05,385 I'LL WALK THROUGH. 7757 05:09:05,385 --> 05:09:13,527 IN L.A. WE HAVE A CENTER 7758 05:09:13,527 --> 05:09:17,598 ADDRESSING -- UNHOUSED, THE 7759 05:09:17,598 --> 05:09:18,699 TERMINOLOGY KEEPS CHANGING, 7760 05:09:18,699 --> 05:09:21,401 ENHANCEMENT OF COMMUNITY 7761 05:09:21,401 --> 05:09:24,004 INTEGRATION FOR HOMELESS 7762 05:09:24,004 --> 05:09:25,372 EXPERIENCED VETERANS, IN L.A. 7763 05:09:25,372 --> 05:09:26,573 THERE'S A HUGE HOMELESS 7764 05:09:26,573 --> 05:09:30,077 POPULATION, AND MANY OF THEM ARE 7765 05:09:30,077 --> 05:09:32,346 VETERANS. 7766 05:09:32,346 --> 05:09:35,616 PORTLAND IS NATIONAL CENTER FOR 7767 05:09:35,616 --> 05:09:37,484 REHABILITATIVE RESEARCH, SEATTLE 7768 05:09:37,484 --> 05:09:41,121 LIMB LOSS AND MOBILITY, LOWER 7769 05:09:41,121 --> 05:09:41,889 LIMB. 7770 05:09:41,889 --> 05:09:43,056 IOWA, THIS IS VISION, PREVENTION 7771 05:09:43,056 --> 05:09:45,158 AND TREATMENT OF VISUAL LOSS. 7772 05:09:45,158 --> 05:09:47,127 MINNEAPOLIS IS LOOKING AT 7773 05:09:47,127 --> 05:09:50,631 ENGINEERING CENTER TO OPTIMIZE 7774 05:09:50,631 --> 05:09:52,699 VETERAN ENGAGEMENT 7775 05:09:52,699 --> 05:09:53,033 REINTEGRATION. 7776 05:09:53,033 --> 05:09:55,836 THERE ARE TWO IN CLEVELAND, 7777 05:09:55,836 --> 05:09:57,070 ADVANCED PLATFORM TECHNOLOGY, I 7778 05:09:57,070 --> 05:10:00,807 SAW THAT MENTIONED TODAY, AND 7779 05:10:00,807 --> 05:10:01,875 FUNCTIONAL ELECTRICAL 7780 05:10:01,875 --> 05:10:03,644 STIMULATION, PITTSBURGH IS 7781 05:10:03,644 --> 05:10:09,116 WHEELCHAIRS, ASSISTIVE ROBOTIC 7782 05:10:09,116 --> 05:10:09,549 ENGINEERING. 7783 05:10:09,549 --> 05:10:12,619 BOSTON IS TRACTS, FOR TBI AND 7784 05:10:12,619 --> 05:10:14,254 STRESS DISORDERS. 7785 05:10:14,254 --> 05:10:17,324 PROVIDENCE IS NEUROLET'S AND 7786 05:10:17,324 --> 05:10:17,691 NEUROTECHNOLOGY. 7787 05:10:17,691 --> 05:10:20,961 AND WEST HAVEN RESTORATION OF 7788 05:10:20,961 --> 05:10:23,563 NERVOUS SYSTEM FUNCTION WHERE 7789 05:10:23,563 --> 05:10:25,098 THERE'S NON-OPIOID PAIN RESEARCH 7790 05:10:25,098 --> 05:10:26,166 TO ADDRESS CHRONIC PAIN 7791 05:10:26,166 --> 05:10:26,633 CONDITIONS. 7792 05:10:26,633 --> 05:10:32,539 THAT'S PART OF WHAT THEY DO. 7793 05:10:32,539 --> 05:10:37,711 PHILADELPHIA IS LOOKING AT 7794 05:10:37,711 --> 05:10:41,748 CARTILAGE REGENERATION, 7795 05:10:41,748 --> 05:10:44,952 TECHNOLOGY TO ENABLE MOTION. 7796 05:10:44,952 --> 05:10:46,253 GEORGIA IS VISUAL AND 7797 05:10:46,253 --> 05:10:48,121 NEUROCOGNITIVE, BRAIN RESEARCH 7798 05:10:48,121 --> 05:10:49,756 IN FLORIDA, OUR 14 CENTERS. 7799 05:10:49,756 --> 05:10:51,258 EACH MISSION IS UNIQUE. 7800 05:10:51,258 --> 05:10:55,796 THE FOCUS AREAS ARE UNIQUE, AND 7801 05:10:55,796 --> 05:11:02,536 THE GOALS ARE UNIQUE. 7802 05:11:02,536 --> 05:11:04,171 ALL RIGHT. 7803 05:11:04,171 --> 05:11:06,273 AND NOW THIS IS, AS I SAID, OVER 7804 05:11:06,273 --> 05:11:08,375 TIME THERE'S HUNDREDS OF AWARDS 7805 05:11:08,375 --> 05:11:13,313 SO I PICKED SOME THINGS HERE TO 7806 05:11:13,313 --> 05:11:16,149 JUST MENTION AND TELL YOU ABOUT. 7807 05:11:16,149 --> 05:11:19,319 I DO WANT TO MENTION ONE THING 7808 05:11:19,319 --> 05:11:21,922 PARTICULARLY WITH THE TBI 7809 05:11:21,922 --> 05:11:24,024 RESEARCH BECAUSE WE DO -- WE'RE 7810 05:11:24,024 --> 05:11:27,094 INVOLVED WITH THE NIDILRR, WITH 7811 05:11:27,094 --> 05:11:28,962 TBI MODEL SYSTEMS, WITH DATA AND 7812 05:11:28,962 --> 05:11:32,866 WORK THERE, ALSO WITH THE SPINAL 7813 05:11:32,866 --> 05:11:36,470 CORD INJURY SCI SYSTEMS, WITH 7814 05:11:36,470 --> 05:11:39,473 FITBIR, AND WORK IN THAT SYSTEM 7815 05:11:39,473 --> 05:11:39,773 TOO. 7816 05:11:39,773 --> 05:11:42,509 THERE'S A LOT OF CONNECTION AND 7817 05:11:42,509 --> 05:11:44,811 INTEGRATION AND THERE'S A V.A. 7818 05:11:44,811 --> 05:11:48,648 DoD CHRONIC EFFECTS OF 7819 05:11:48,648 --> 05:11:49,249 NEUROTRAUMA, UNDERSTANDING THE 7820 05:11:49,249 --> 05:11:52,152 BLAST AND THOSE KINDS OF EVENTS, 7821 05:11:52,152 --> 05:11:54,021 WHAT'S HAPPENING WITH SERVICE 7822 05:11:54,021 --> 05:11:55,689 MEMBERS AND VETERANS, THAT'S IN 7823 05:11:55,689 --> 05:11:57,958 ITS SECOND CYCLE SO IT'S BEEN 7824 05:11:57,958 --> 05:12:00,160 GOING FOR EIGHT, NINE YEARS OR 7825 05:12:00,160 --> 05:12:00,961 SO. 7826 05:12:00,961 --> 05:12:01,895 AND THAT'S A COLLABORATIVE 7827 05:12:01,895 --> 05:12:05,532 EFFORT SO THERE'S LOTS OF 7828 05:12:05,532 --> 05:12:07,034 COLLABORATIVE EFFORTS, SPMs 7829 05:12:07,034 --> 05:12:08,468 INTERACT WITH THEIR COLLEAGUES 7830 05:12:08,468 --> 05:12:11,738 AT NIH AND DoD AND NIDILRR, 7831 05:12:11,738 --> 05:12:14,808 AND THERE'S A COMMUNITY THERE 7832 05:12:14,808 --> 05:12:16,676 AMONGST THE PROGRAM PEOPLE, AND 7833 05:12:16,676 --> 05:12:21,281 THE FOLKS WHO ARE ALSO IN DEPUTY 7834 05:12:21,281 --> 05:12:21,982 DIRECTOR, DIRECTOR POSITIONS 7835 05:12:21,982 --> 05:12:23,583 LIKE THAT SO WE HAVE HIGH 7836 05:12:23,583 --> 05:12:27,087 INTERACTION WITH EACH OTHER. 7837 05:12:27,087 --> 05:12:29,056 SO, SOME HIGHLIGHTS HERE, 7838 05:12:29,056 --> 05:12:31,024 THIS -- ADDRESSING PROSTHETIC 7839 05:12:31,024 --> 05:12:34,394 KNEES OF WOMEN VETERANS WAS A 7840 05:12:34,394 --> 05:12:36,263 PARTICULAR VETERAN AND 7841 05:12:36,263 --> 05:12:37,097 CONGRESSIONAL INTEREST. 7842 05:12:37,097 --> 05:12:40,767 AND WHAT'S COME OUT OF THAT IS 7843 05:12:40,767 --> 05:12:48,942 THIS 3D ANKLE FOOT SYSTEM, 7844 05:12:48,942 --> 05:12:49,576 INTERCHANGEABLE FEET, COMMERCIAL 7845 05:12:49,576 --> 05:12:52,145 PARTNER, UNYK IS THE PARTNER, 7846 05:12:52,145 --> 05:12:55,449 WOMEN'S VETERANS WANTING TO WEAR 7847 05:12:55,449 --> 05:12:57,084 REALLY VARIABLE HEELS, HIGH 7848 05:12:57,084 --> 05:13:00,053 HEELS, SANDALS, ALL OF THAT. 7849 05:13:00,053 --> 05:13:02,022 OBVIOUSLY MEN WILL BENEFIT TOO 7850 05:13:02,022 --> 05:13:05,092 BUT THE DRIVER WAS THE WOMEN 7851 05:13:05,092 --> 05:13:07,260 VETERANS AND THE LEAD THERE IS 7852 05:13:07,260 --> 05:13:08,895 ANDREW HANSEN, MINNEAPOLIS. 7853 05:13:08,895 --> 05:13:13,600 THERE'S ALSO THESE 3D-PRINTED 7854 05:13:13,600 --> 05:13:15,035 COSMETICALLY INTERESTING 7855 05:13:15,035 --> 05:13:16,470 DESIGNED FEET WITH DESIGNS, 7856 05:13:16,470 --> 05:13:17,537 DIFFERENT COLORS, ALSO THAT'S 7857 05:13:17,537 --> 05:13:18,672 COMING OUT OF MINNEAPOLIS AND I 7858 05:13:18,672 --> 05:13:20,841 WILL POINT OUT IT WAS MENTIONED 7859 05:13:20,841 --> 05:13:29,783 BY THERESA THIS MORNING WITH THE 7860 05:13:29,783 --> 05:13:32,486 TWO DISCOVERIES PART OF THE 7861 05:13:32,486 --> 05:13:35,188 WHITE HOUSE DEMO DAY. 7862 05:13:35,188 --> 05:13:36,823 THERE'S THE DIGITS, FINGERS, TO 7863 05:13:36,823 --> 05:13:40,327 GET THEM RIGHT SIZED FOR WOMEN. 7864 05:13:40,327 --> 05:13:44,030 AND SO RICH WEIR LED THAT. 7865 05:13:44,030 --> 05:13:47,100 THESE ARE 3D-PRINTED FINGERS, 7866 05:13:47,100 --> 05:13:49,402 APPROPRIATELY SIZED, IT'S 7867 05:13:49,402 --> 05:13:50,704 UNPOWERED RATCHETING, IT'S 7868 05:13:50,704 --> 05:13:52,806 SIMPLE, DURABLE. 7869 05:13:52,806 --> 05:13:54,007 AND THE COMMERCIAL PARTNER THERE 7870 05:13:54,007 --> 05:13:56,209 IS POINT DIGIT WHERE THEY CAN BE 7871 05:13:56,209 --> 05:13:56,877 PURCHASED FROM. 7872 05:13:56,877 --> 05:14:01,348 AND I DO HAVE TO MENTION THIS 7873 05:14:01,348 --> 05:14:03,950 ADVANCED PROSTHETIC ARM, THE 7874 05:14:03,950 --> 05:14:06,486 LUKE ARM, A PARTNERSHIP WHERE 7875 05:14:06,486 --> 05:14:08,455 WE, VA, ARE INDEED IN CLINICAL 7876 05:14:08,455 --> 05:14:11,625 PARTNERSHIP WITH DARPA WHEN THEY 7877 05:14:11,625 --> 05:14:13,593 LAUNCHED THE REVOLUTIONIZING 7878 05:14:13,593 --> 05:14:14,794 PROSTHETICS FOR UPPER 7879 05:14:14,794 --> 05:14:15,662 EXTREMITIES PROSTHETICS. 7880 05:14:15,662 --> 05:14:16,563 WE WERE THERE AT THE BEGINNING 7881 05:14:16,563 --> 05:14:20,267 AND WHEN IT WAS READY TO GO INTO 7882 05:14:20,267 --> 05:14:22,035 CLINICAL TRIALS, THEN WE STEPPED 7883 05:14:22,035 --> 05:14:24,237 IN, THE PARTNERSHIP REALLY 7884 05:14:24,237 --> 05:14:28,341 FLOURISHED FROM THERE. 7885 05:14:28,341 --> 05:14:31,645 THAT ARM HAS NATURALISTIC 7886 05:14:31,645 --> 05:14:35,048 MOVEMENT, WHAT NO OTHER ARM HAS, 7887 05:14:35,048 --> 05:14:42,155 A FULLY ARTICULATED SHOULDER. 7888 05:14:42,155 --> 05:14:44,691 LINDA REZNICK WAS THE LEAD. 7889 05:14:44,691 --> 05:14:48,094 DISCOVERY AND DELIVERY TO 7890 05:14:48,094 --> 05:14:49,496 VETERANS, PROGRESSIVE TINNITUS 7891 05:14:49,496 --> 05:14:50,931 MANAGEMENT, A HUGE PROBLEMS 7892 05:14:50,931 --> 05:14:51,998 AMONGST VETERANS. 7893 05:14:51,998 --> 05:14:54,534 THIS PROM WAS DEVELOPED, TESTED, 7894 05:14:54,534 --> 05:14:56,369 IT'S BEEN TRANSLATED INTO THE 7895 05:14:56,369 --> 05:15:01,074 V.A. SYSTEM, IT'S IN DoD, IT'S 7896 05:15:01,074 --> 05:15:03,176 USED NATIONALLY, ALSO AVAILABLE 7897 05:15:03,176 --> 05:15:04,044 IN TELEHEALTH FORMAT. 7898 05:15:04,044 --> 05:15:06,580 WE'VE GOT A LINK OF PEOPLE WHO 7899 05:15:06,580 --> 05:15:09,416 WANT TO AVAIL THEMSELVES OF IT. 7900 05:15:09,416 --> 05:15:11,151 AND I'M MENTIONING TELEHEALTH. 7901 05:15:11,151 --> 05:15:13,987 V.A. HAS BEEN INVOLVED IN 7902 05:15:13,987 --> 05:15:14,888 TELEHEALTH, REMOTE DELIVERY OF 7903 05:15:14,888 --> 05:15:16,856 CARE NOT JUST FOR THIS BUT FOR 7904 05:15:16,856 --> 05:15:17,824 MANY, MANY THINGS. 7905 05:15:17,824 --> 05:15:20,794 IT'S BEEN GOING ON WELL BEFORE 7906 05:15:20,794 --> 05:15:23,530 COVID, THAT V.A. HAS BEEN 7907 05:15:23,530 --> 05:15:25,265 WORKING IN THAT SPACE. 7908 05:15:25,265 --> 05:15:27,133 THINKING IN VISION, SO DETECTING 7909 05:15:27,133 --> 05:15:29,903 AND TREATING EARLY STAGE VISUAL 7910 05:15:29,903 --> 05:15:31,871 PROBLEMS, TO AVOID LATE STAGE 7911 05:15:31,871 --> 05:15:34,474 BLINDNESS DUE TO DIABETES, SOME 7912 05:15:34,474 --> 05:15:37,544 EARLIER LEVEL WORK, THAT'S GOING 7913 05:15:37,544 --> 05:15:39,379 ON. 7914 05:15:39,379 --> 05:15:42,115 AND SO THE POINT THERE IS THEY 7915 05:15:42,115 --> 05:15:46,620 TESTED EFFICACY OF NEURAL 7916 05:15:46,620 --> 05:15:50,023 PROTECTIVE THERAPY, SO LEVODOPA, 7917 05:15:50,023 --> 05:15:51,658 POSITIVE RESULTS, A PATENT 7918 05:15:51,658 --> 05:15:54,527 FILED, LOOKING TO SEE THE 7919 05:15:54,527 --> 05:15:55,195 DEVELOPMENT OF PROTOTYPE 7920 05:15:55,195 --> 05:15:58,231 OCCURRENCE SO THAT COULD BE A 7921 05:15:58,231 --> 05:16:04,004 GOOD INTERVENTION, GETS OVER TO 7922 05:16:04,004 --> 05:16:06,673 HUMANS, MARSHAL PARDUE IS 7923 05:16:06,673 --> 05:16:08,074 LEADING THAT IN ATLANTA. 7924 05:16:08,074 --> 05:16:11,044 THIS IS THE AUDITORY SPACE, 7925 05:16:11,044 --> 05:16:12,145 TOXICITY MONITORING PROGRAM, AND 7926 05:16:12,145 --> 05:16:17,817 THAT'S TO ADDRESS THE SIDE 7927 05:16:17,817 --> 05:16:19,352 EFFECTS FROM OTOTOXIC TREATMENT, 7928 05:16:19,352 --> 05:16:22,088 IT CAN IMPAIR QUALITY OF LIFE, 7929 05:16:22,088 --> 05:16:25,358 IT'S A MATTER OF BEING CONNECTED 7930 05:16:25,358 --> 05:16:28,094 WITH CLINICIANS AND ONCOLOGY 7931 05:16:28,094 --> 05:16:29,629 FOLKS TO RAISE AWARENESS ALL THE 7932 05:16:29,629 --> 05:16:32,599 WAY AROUND, DO THE MONITORING, 7933 05:16:32,599 --> 05:16:33,566 ADJUSTMENTS MADE WITH TREATMENT 7934 05:16:33,566 --> 05:16:35,435 SO THAT HEARING CAN BE PRESERVED 7935 05:16:35,435 --> 05:16:39,039 SO THAT'S THE INTENT BEHIND IT. 7936 05:16:39,039 --> 05:16:41,141 ALSO THIS INTERNATIONAL 7937 05:16:41,141 --> 05:16:42,442 OTOTOXICITY MANAGEMENT GUIDELINE 7938 05:16:42,442 --> 05:16:45,945 WORKING GROUP, WHICH IS 7939 05:16:45,945 --> 05:16:49,883 SPEARHEADED BY DR. MARTIN AT 7940 05:16:49,883 --> 05:16:51,418 PORTLAND, SHE'S THE LEAD BEHIND 7941 05:16:51,418 --> 05:16:55,255 THE TWO THINGS AND THIS HAS A 7942 05:16:55,255 --> 05:16:58,992 GLOBAL CONSORTIUM GOING ON WITH 7943 05:16:58,992 --> 05:16:59,993 UNIVERSITIES AND HEALTH 7944 05:16:59,993 --> 05:17:01,194 FOUNDATIONS, EVERYBODY WHO IS 7945 05:17:01,194 --> 05:17:04,030 INTERESTED IN THIS SPACE 7946 05:17:04,030 --> 05:17:06,866 REGARDING OTOTOXICITY 7947 05:17:06,866 --> 05:17:07,167 MANAGEMENT. 7948 05:17:07,167 --> 05:17:13,973 AND THEY ARE HEALTH CARE GAPS, 7949 05:17:13,973 --> 05:17:16,710 INDIVIDUALS WITH TINNITUS, 7950 05:17:16,710 --> 05:17:19,879 FOLLOWING EXPOSURE, PRETTY 7951 05:17:19,879 --> 05:17:21,514 EXCITING. 7952 05:17:21,514 --> 05:17:26,453 AND THEN WE'VE HAD SOME ACTIVITY 7953 05:17:26,453 --> 05:17:28,855 WITH THE ASSESSING OF INJURY, I 7954 05:17:28,855 --> 05:17:30,824 PUT THE DEFINITION IN THERE. 7955 05:17:30,824 --> 05:17:32,125 DIFFICULTIES THAT PEOPLE FACE 7956 05:17:32,125 --> 05:17:33,993 AFTER DOING HIGH STAKES THINGS 7957 05:17:33,993 --> 05:17:35,628 THAT VIOLATE WHAT IS RIGHT AND 7958 05:17:35,628 --> 05:17:38,832 JUST OR AFTER BEING FORCED TO 7959 05:17:38,832 --> 05:17:41,568 EXPERIENCE OTHERS' IMMORAL 7960 05:17:41,568 --> 05:17:42,802 ACTIONS. 7961 05:17:42,802 --> 05:17:43,837 SO THAT'S THE STANDARD 7962 05:17:43,837 --> 05:17:46,272 DEFINITION IN THE WAY THE TERM 7963 05:17:46,272 --> 05:17:49,542 IS USED. 7964 05:17:49,542 --> 05:17:52,278 SO THE LEAD IS IN BOSTON, HE 7965 05:17:52,278 --> 05:17:55,348 DEVELOPED A MORAL INJURY OUTCOME 7966 05:17:55,348 --> 05:17:57,550 SCALE TO ASSESS MORAL INJURY IN 7967 05:17:57,550 --> 05:17:57,951 VETERANS. 7968 05:17:57,951 --> 05:17:59,152 THERE'S THE WEBSITE. 7969 05:17:59,152 --> 05:18:00,487 THEY HAVE THIS WEBSITE GOING. 7970 05:18:00,487 --> 05:18:02,255 BECAUSE THIS IS SUCH A NEW AREA, 7971 05:18:02,255 --> 05:18:04,958 SO MUCH TO LEARN AND UNDERSTAND 7972 05:18:04,958 --> 05:18:06,760 ABOUT IT, AGAIN, THE COMMUNITY 7973 05:18:06,760 --> 05:18:10,096 OF PEOPLE WHO WILL BE 7974 05:18:10,096 --> 05:18:11,297 INTERESTED, VETERANS, FAMILIES, 7975 05:18:11,297 --> 05:18:13,066 NOT VETERANS, CLERGY, CHAPLAINS, 7976 05:18:13,066 --> 05:18:16,236 TO GO AND LEARN AND INTERACT AND 7977 05:18:16,236 --> 05:18:20,173 SO THAT'S REALLY A GREAT 7978 05:18:20,173 --> 05:18:20,774 RESOURCE. 7979 05:18:20,774 --> 05:18:23,243 DEPRESSION TREATMENT, THIS IS 7980 05:18:23,243 --> 05:18:24,344 LOW INTENSITY FOCUSED 7981 05:18:24,344 --> 05:18:26,846 ULTRASOUND, A NEW TYPE, 7982 05:18:26,846 --> 05:18:27,514 NON-INVASIVE BRAIN STIMULATION, 7983 05:18:27,514 --> 05:18:29,149 MIGHT BE ABLE TO GET AT DEEP 7984 05:18:29,149 --> 05:18:31,317 STRUCTURES OF THE BRAIN INVOLVED 7985 05:18:31,317 --> 05:18:32,318 WITH DEPRESSION, ANXIETY. 7986 05:18:32,318 --> 05:18:36,256 ALSO LOOKING AT THE FEASIBILITY 7987 05:18:36,256 --> 05:18:41,294 OF SIMULTANEOUS fMRI WITH THE 7988 05:18:41,294 --> 05:18:42,829 FOCUSED ULTRASOUND, DOING 7989 05:18:42,829 --> 05:18:43,663 FIRST-IN-HUMAN STUDY, SAFETY, 7990 05:18:43,663 --> 05:18:45,999 FEASIBILITY, COULD LEAD TO 7991 05:18:45,999 --> 05:18:47,967 INNOVATIVE TREATMENTS. 7992 05:18:47,967 --> 05:18:54,841 DR. PHILIP AT PROVIDENCE V.A. 7993 05:18:54,841 --> 05:18:58,011 AND GROUP EFFORTS, ENABLING 7994 05:18:58,011 --> 05:18:59,646 SENSATION TO TOUCH, PROSTHETIC 7995 05:18:59,646 --> 05:19:00,413 LIMBS. 7996 05:19:00,413 --> 05:19:02,182 THESE ARE NEURAL PROSTHETIC 7997 05:19:02,182 --> 05:19:03,283 SYSTEMS IMPLANTED TO IMPROVE 7998 05:19:03,283 --> 05:19:05,785 HAND FUNCTION, THIS IS ABOUT 7999 05:19:05,785 --> 05:19:08,188 PROVIDING EMBODIMENT SO NATURAL 8000 05:19:08,188 --> 05:19:09,856 FEEL, NATURAL PERCEPTIONS, ALSO 8001 05:19:09,856 --> 05:19:12,158 BEING DEVELOPED FOR THE FOOT. 8002 05:19:12,158 --> 05:19:13,893 AND THIS INITIAL DEVELOPMENT 8003 05:19:13,893 --> 05:19:16,529 THEY ARE DOING FIRST-IN-HUMAN 8004 05:19:16,529 --> 05:19:18,531 TRIALS, COMPONENT DEVELOPMENT, 8005 05:19:18,531 --> 05:19:21,134 IT'S OCCURRING ON THE HEELS OR 8006 05:19:21,134 --> 05:19:21,901 FOLLOWING THE DARPA HAPTIX 8007 05:19:21,901 --> 05:19:22,769 RESEARCH PROGRAM. 8008 05:19:22,769 --> 05:19:25,872 THEY PUT THE LARGE MONEY INTO IT 8009 05:19:25,872 --> 05:19:27,006 TO GET THE TECHNOLOGY DEVELOPED 8010 05:19:27,006 --> 05:19:31,878 UP TO THE POINT TO START TO DO 8011 05:19:31,878 --> 05:19:34,180 THESE INITIAL TRIALS. 8012 05:19:34,180 --> 05:19:39,652 AND THE SENSOR IN THE PROSTHETIC 8013 05:19:39,652 --> 05:19:42,622 HAND -- SENSORS ACTIVATE THE 8014 05:19:42,622 --> 05:19:43,857 IMPLANTED NERVE CUFF ELECTRODE 8015 05:19:43,857 --> 05:19:47,193 AND YOU GET POINT INTERPRETING 8016 05:19:47,193 --> 05:19:53,233 THE SIGNAL AT TOUCH SEVEN -- 8017 05:19:53,233 --> 05:19:57,570 SENSATION IN THE MISSING LIMB, 8018 05:19:57,570 --> 05:20:00,707 UPPER LIMB, DR. TYLER, AND RON 8019 05:20:00,707 --> 05:20:02,842 TRIOLO WITH RESPECT TO THE FOOT. 8020 05:20:02,842 --> 05:20:05,578 AND THIS IS A SPACE WHERE THERE 8021 05:20:05,578 --> 05:20:08,414 HAVE BEEN MANY FUNDERS, IT'S 8022 05:20:08,414 --> 05:20:09,849 EXPENSIVE RESEARCH, AND THEY 8023 05:20:09,849 --> 05:20:11,618 WILL GET THERE. 8024 05:20:11,618 --> 05:20:18,057 THEY ARE REFINING IT. 8025 05:20:18,057 --> 05:20:18,925 THE AMPREDICT, THE CLINICAL 8026 05:20:18,925 --> 05:20:20,994 DECISION MAKING TOOL FOR THE 8027 05:20:20,994 --> 05:20:23,530 PATIENT, FOR THE PROVIDER, AND 8028 05:20:23,530 --> 05:20:28,301 IT'S A REALLY GREAT ONLINE TOOL, 8029 05:20:28,301 --> 05:20:30,637 AND IT'S REALLY TO LOOK AT WHEN 8030 05:20:30,637 --> 05:20:32,906 THERE'S A KNOWN SCHEDULED LOWER 8031 05:20:32,906 --> 05:20:35,975 LIMB AMPUTATION, THAT'S GOING TO 8032 05:20:35,975 --> 05:20:37,744 HAPPEN, THAT'S THE MAIN REASON 8033 05:20:37,744 --> 05:20:39,479 FOR LIMB LOSS AND FOR LIMB LOSS 8034 05:20:39,479 --> 05:20:41,881 IN V.A. 8035 05:20:41,881 --> 05:20:42,882 THERE'S THE UNFORTUNATE 8036 05:20:42,882 --> 05:20:48,988 TRAUMATIC BUT BY AND LARGE IT'S 8037 05:20:48,988 --> 05:20:52,959 SCHEDULED AMPUTATIONS USING 21 8038 05:20:52,959 --> 05:20:55,261 PREDICTORS, CALCULATING IN A 8039 05:20:55,261 --> 05:20:57,096 PATIENT-SPECIFIC WAY THE 8040 05:20:57,096 --> 05:20:58,865 SPECIFIC MOBILITY, RISK OF 8041 05:20:58,865 --> 05:21:00,600 MORTALITY, RISK TO HAVE TO DO 8042 05:21:00,600 --> 05:21:01,834 REAMPUTATION WHEN THEY DECIDE ON 8043 05:21:01,834 --> 05:21:04,537 WHAT LEVEL TO DO THE AMPUTATION. 8044 05:21:04,537 --> 05:21:08,141 BUT THIS IS WHERE IT'S ENABLING 8045 05:21:08,141 --> 05:21:10,109 THE VETERAN AND PHYSICIAN TO 8046 05:21:10,109 --> 05:21:11,744 WORK TOGETHER, SO THAT THEY 8047 05:21:11,744 --> 05:21:15,381 UNDERSTAND WHAT'S GOING ON AND 8048 05:21:15,381 --> 05:21:17,350 YOU UNDERSTAND RISKS, BENEFITS, 8049 05:21:17,350 --> 05:21:20,320 AND THE ULTIMATE LEVEL OF 8050 05:21:20,320 --> 05:21:23,690 AMPUTATION, AS WELL AS GETTING 8051 05:21:23,690 --> 05:21:25,458 THE PATIENTS, VETERANS' GOALS 8052 05:21:25,458 --> 05:21:34,934 AND DESIRES LINED UP SO IT CAN 8053 05:21:34,934 --> 05:21:45,078 BE AS -- 8054 05:21:45,345 --> 05:21:53,586 [ NO AUDIO ] 8055 05:21:53,586 --> 05:21:59,592 8056 05:21:59,592 --> 05:22:09,636 8057 05:22:26,119 --> 05:22:30,323 >> CHECK, CHECK. 8058 05:22:30,323 --> 05:22:30,657 CHECK, CHECK. 8059 05:22:30,657 --> 05:22:33,159 >> HEARD. 8060 05:22:33,159 --> 05:22:34,060 >> OKAY. 8061 05:22:34,060 --> 05:22:35,028 ALL RIGHT. 8062 05:22:35,028 --> 05:22:39,632 THAT WOULD NOT BE NICE. 8063 05:22:39,632 --> 05:22:40,166 OKAY. 8064 05:22:40,166 --> 05:22:42,268 SO, THIS AMPREDICT THE BETA 8065 05:22:42,268 --> 05:22:43,236 VERSION WAS FORMALLY TESTED HERE 8066 05:22:43,236 --> 05:22:45,004 IN THE U.S. AS WELL AS OUTSIDE 8067 05:22:45,004 --> 05:22:47,740 OF THE U.S. AND THEN YOU CAN GO 8068 05:22:47,740 --> 05:22:51,444 ONLINE TO ACTUALLY SEE IT NOW 8069 05:22:51,444 --> 05:22:52,578 AND CAN USE IT. 8070 05:22:52,578 --> 05:22:53,846 THERE'S A DISCLAIMER AT THE 8071 05:22:53,846 --> 05:22:56,482 FRONT END, YOU READ IT, YOU 8072 05:22:56,482 --> 05:22:58,151 UNDERSTAND THE LIMITATIONS AND 8073 05:22:58,151 --> 05:23:02,155 THE LIABILITIES AND ALL OF THAT. 8074 05:23:02,155 --> 05:23:03,122 SO THAT EXISTS. 8075 05:23:03,122 --> 05:23:05,558 AND YOU SAW THIS THIS MORNING. 8076 05:23:05,558 --> 05:23:07,193 THIS IS ADVANCEMENTS IN 8077 05:23:07,193 --> 05:23:07,860 WHEELCHAIR MOBILITY. 8078 05:23:07,860 --> 05:23:10,596 SO THIS IS DR. COOPER AND HIS 8079 05:23:10,596 --> 05:23:15,068 TEAM AT PITTSBURGH, THERE'S THAT 8080 05:23:15,068 --> 05:23:17,603 WHEELCHAIR, THE FOLDABLE 8081 05:23:17,603 --> 05:23:19,338 LIGHTWEIGHT WHEELCHAIR, BUT 8082 05:23:19,338 --> 05:23:21,441 THAT'S A THING THAT HAS HAPPENED 8083 05:23:21,441 --> 05:23:29,415 WITH DR. COOPER AND HIS TEAM. 8084 05:23:29,415 --> 05:23:35,421 THEY HAVE ERGONOMIC, LIGHTER 8085 05:23:35,421 --> 05:23:36,956 WEIGHT, THE CUSHION DESIGN, 8086 05:23:36,956 --> 05:23:39,058 TRANSFERS TO BED, CHAIR, 8087 05:23:39,058 --> 05:23:40,226 COMMODE, PRESERVING SHOULDER 8088 05:23:40,226 --> 05:23:43,529 ROTATOR CUFF BUT ALSO WITH 8089 05:23:43,529 --> 05:23:46,265 CAREGIVERS, NURSES AIDES WITH 8090 05:23:46,265 --> 05:23:47,800 TRANSFERRING INDIVIDUALS OUT OF 8091 05:23:47,800 --> 05:23:48,534 WHEELCHAIRS. 8092 05:23:48,534 --> 05:23:50,136 AND THEN THERE'S FEEDING AND 8093 05:23:50,136 --> 05:23:51,170 POSITIONING GUIDELINES AND ALL 8094 05:23:51,170 --> 05:23:51,738 OF THAT. 8095 05:23:51,738 --> 05:23:54,373 THAT'S COME OUT OF THIS GROUP. 8096 05:23:54,373 --> 05:23:56,209 THEY WORK WITH ASSISTIVE 8097 05:23:56,209 --> 05:23:56,976 TECHNOLOGY STANDARDS. 8098 05:23:56,976 --> 05:23:59,612 THESE THINGS GET TO MARKET AND 8099 05:23:59,612 --> 05:24:00,379 BECOME AVAILABLE. 8100 05:24:00,379 --> 05:24:04,083 AND THE OTHER THING TO MENTION 8101 05:24:04,083 --> 05:24:05,618 HERE, THIS IS ABOUT -- IT'S 8102 05:24:05,618 --> 05:24:08,154 SPINAL CORD INJURY IN THE 8103 05:24:08,154 --> 05:24:09,021 CONTEXT OF VOCATIONAL 8104 05:24:09,021 --> 05:24:10,556 INTEGRATION PROGRAM. 8105 05:24:10,556 --> 05:24:12,191 THEY USE PREDICTIVE OUTCOME 8106 05:24:12,191 --> 05:24:13,826 MODEL OVER TIME FOR EMPLOYMENT 8107 05:24:13,826 --> 05:24:18,531 TO SEE DOES THIS SCI PROMOTE -- 8108 05:24:18,531 --> 05:24:20,066 DOES IT WORK BECAUSE RETURN TO 8109 05:24:20,066 --> 05:24:22,135 WORK RATES FOLLOWING SPINAL CORD 8110 05:24:22,135 --> 05:24:27,974 INJURY PARTICULARLY IN VETERAN 8111 05:24:27,974 --> 05:24:28,941 POPULATION ARE HORRIBLE, SINGLE 8112 05:24:28,941 --> 05:24:30,376 DIGIT, THAT BAD. 8113 05:24:30,376 --> 05:24:34,213 SO THE PROGRAM SHOWED 8114 05:24:34,213 --> 05:24:36,082 IMPROVEMENTS WITH EMPLOYMENT 8115 05:24:36,082 --> 05:24:37,383 STATUS, PRODUCTIVITY, 8116 05:24:37,383 --> 05:24:39,452 WELL-BEING, QUALITY OF LIFE, AND 8117 05:24:39,452 --> 05:24:41,420 SO WHAT'S HAPPENED NOW ON 8118 05:24:41,420 --> 05:24:43,189 IMPACTS, SOME V.A. DIRECTIVES 8119 05:24:43,189 --> 05:24:46,692 HAVE BEEN UPDATED TO ADD A VOC 8120 05:24:46,692 --> 05:24:48,995 REHAB SPECIALIST, AND TO EXPAND 8121 05:24:48,995 --> 05:24:49,862 SUPPORTED EMPLOYMENT. 8122 05:24:49,862 --> 05:24:54,901 NOW THEY ARE LOOKING AT VETERANS 8123 05:24:54,901 --> 05:24:56,769 WITH MENTAL HEALTH, DISABILITY, 8124 05:24:56,769 --> 05:24:58,604 SPINAL CORD INJURY, TBI, PTSD, A 8125 05:24:58,604 --> 05:25:00,807 TOOLKIT NOW IN PLACE BEING USED 8126 05:25:00,807 --> 05:25:02,575 IN RESEARCH, BEING USED IN 8127 05:25:02,575 --> 05:25:04,210 TRAINING V.A.-WIDE. 8128 05:25:04,210 --> 05:25:10,449 THIS IS THE LEAD AS LISA 8129 05:25:10,449 --> 05:25:11,117 OTTOMANELLI OUT OF TAMPA, 8130 05:25:11,117 --> 05:25:14,053 SOMETHING MANY OF US ARE 8131 05:25:14,053 --> 05:25:15,755 FUNDING. 8132 05:25:15,755 --> 05:25:16,255 IT'S IMPORTANT. 8133 05:25:16,255 --> 05:25:18,858 IT'S A LONG HAUL RESEARCH WITH 8134 05:25:18,858 --> 05:25:20,960 BRAIN-COMPUTER INTERFACE WORKING 8135 05:25:20,960 --> 05:25:23,229 WITH A GROUP WITH A TEAM AT 8136 05:25:23,229 --> 05:25:26,866 PROVIDENCE USING THE BRAIN GATE 8137 05:25:26,866 --> 05:25:27,834 SYSTEM. 8138 05:25:27,834 --> 05:25:30,269 AND TWO WAYS FOR COMMUNICATION, 8139 05:25:30,269 --> 05:25:32,672 IF INDIVIDUALS HAVE PARALYSIS OR 8140 05:25:32,672 --> 05:25:35,074 LOSS OF SPEECH TO GET 8141 05:25:35,074 --> 05:25:41,447 COMMUNICATION BACK TO ENABLE 8142 05:25:41,447 --> 05:25:42,415 ASSISTIVE DEVICES, AND FOR 8143 05:25:42,415 --> 05:25:44,183 MOBILITY THE BIG THING TO GET 8144 05:25:44,183 --> 05:25:46,919 BACK IS ARM AND GRASP BECAUSE 8145 05:25:46,919 --> 05:25:49,422 THAT'S WHERE YOU GET A -- A 8146 05:25:49,422 --> 05:25:50,256 PERSON WOULD GET A LOT OF 8147 05:25:50,256 --> 05:25:51,591 FUNCTION BACK. 8148 05:25:51,591 --> 05:25:55,094 THEY ARE USING THE BRAIN GATE TO 8149 05:25:55,094 --> 05:25:58,064 HARNESS THAT BRAIN ACTIVITY SO 8150 05:25:58,064 --> 05:26:00,833 THAT ASSISTIVE ROBOTIC DEVICES, 8151 05:26:00,833 --> 05:26:03,870 ADVANCED PROSTHETIC ARMS CAN BE 8152 05:26:03,870 --> 05:26:05,605 MANIPULATED THROUGH THE USE OF 8153 05:26:05,605 --> 05:26:08,908 THAT SYSTEM. 8154 05:26:08,908 --> 05:26:15,047 AND IN BOSTON, LED BY 8155 05:26:15,047 --> 05:26:19,619 McGLINCHY AND MILBERG, SADLY 8156 05:26:19,619 --> 05:26:22,488 DR. McGLINCHY HAS PASSED BUT 8157 05:26:22,488 --> 05:26:24,123 WAS INVOLVED. 8158 05:26:24,123 --> 05:26:29,729 THERE WAS A NEED FOR GOLD 8159 05:26:29,729 --> 05:26:31,163 STANDARD SPECIFICALLY FOR POST 8160 05:26:31,163 --> 05:26:33,432 9/11 VETERANS AND THEY VALIDATED 8161 05:26:33,432 --> 05:26:35,768 THIS THROUGH THE TRACT CENTER, 8162 05:26:35,768 --> 05:26:38,204 THAT VALIDATION STUDY CAME OUT 8163 05:26:38,204 --> 05:26:40,506 IN 2014, SEMI STRUCTURED 8164 05:26:40,506 --> 05:26:42,909 INTERVIEW, IT'S BEING USED, IT'S 8165 05:26:42,909 --> 05:26:45,111 AVAILABLE OUT THERE, FREE TO THE 8166 05:26:45,111 --> 05:26:47,513 PUBLIC, BEING USED REALLY 8167 05:26:47,513 --> 05:26:48,948 NATIONALLY, INTERNATIONALLY, 8168 05:26:48,948 --> 05:26:50,249 LOCALLY, SO IT'S A RESOURCE AND 8169 05:26:50,249 --> 05:26:56,155 A TOOL. 8170 05:26:56,155 --> 05:26:58,557 AND THE LAST BATCH OF SLIDES ARE 8171 05:26:58,557 --> 05:27:00,626 WAYS TO GO ONLINE, LOOK THINGS 8172 05:27:00,626 --> 05:27:04,697 UP, HOW TO CONNECT, MORE 8173 05:27:04,697 --> 05:27:05,464 RESOURCE TYPE SLIDES. 8174 05:27:05,464 --> 05:27:08,734 AND THIS IS WHAT IT'S ALL ABOUT, 8175 05:27:08,734 --> 05:27:10,269 THE VETERAN. 8176 05:27:10,269 --> 05:27:13,773 SO I HOPE WITH THIS TOUR THAT 8177 05:27:13,773 --> 05:27:16,475 PEOPLE HAVE BETTER IDEA OF WHAT 8178 05:27:16,475 --> 05:27:19,445 WE DO, IN V.A., FOR VETERANS. 8179 05:27:19,445 --> 05:27:20,546 I REALLY APPRECIATE THIS 8180 05:27:20,546 --> 05:27:23,849 OPPORTUNITY TO TELL YOU ABOUT 8181 05:27:23,849 --> 05:27:24,016 US. 8182 05:27:24,016 --> 05:27:25,251 >> THANK YOU, TRISH. 8183 05:27:25,251 --> 05:27:27,553 WE'LL TAKE JUST A COUPLE 8184 05:27:27,553 --> 05:27:29,722 QUESTIONS. 8185 05:27:29,722 --> 05:27:35,795 8186 05:27:35,795 --> 05:27:45,838 8187 05:27:48,207 --> 05:27:52,845 >> HOW MANY -- WHAT PEOPLE 8188 05:27:52,845 --> 05:27:53,479 OVERLAP IN NIH-FUNDED RESEARCH 8189 05:27:53,479 --> 05:27:58,250 (INAUDIBLE). 8190 05:27:58,250 --> 05:28:00,453 >> YEAH, WELL, THE POINT IS THAT 8191 05:28:00,453 --> 05:28:01,420 THE INVESTIGATOR WITH WHATEVER 8192 05:28:01,420 --> 05:28:04,890 THE IDEA AND THE SCIENCE IS, 8193 05:28:04,890 --> 05:28:08,861 THEY GO TO THE RIGHT FUNDER 8194 05:28:08,861 --> 05:28:10,830 BASED ON HOW -- THE WAY APPROACH 8195 05:28:10,830 --> 05:28:12,298 RIGS CAN BE SPENT AND PURPOSE. 8196 05:28:12,298 --> 05:28:14,567 IF THEY WANT TO DO VETERAN 8197 05:28:14,567 --> 05:28:18,237 CENTRIC RESEARCH IN THE V.A. 8198 05:28:18,237 --> 05:28:19,705 WITH VETERANS, AND THEY ARE ALL 8199 05:28:19,705 --> 05:28:24,410 FORWARD FACING FOR US ON 8200 05:28:24,410 --> 05:28:24,977 FUNCTIONAL OUTCOMES AND 8201 05:28:24,977 --> 05:28:26,946 TRANSLATING, THEN WE'RE THE 8202 05:28:26,946 --> 05:28:28,114 PLACE TO GO TO. 8203 05:28:28,114 --> 05:28:30,983 IF THEY ARE INTERESTED -- ALSO I 8204 05:28:30,983 --> 05:28:32,952 NEED TO MENTION CHRONIC, WITH 8205 05:28:32,952 --> 05:28:34,520 CHRONIC STATE OF CONDITIONS, NOT 8206 05:28:34,520 --> 05:28:34,720 ACUTE. 8207 05:28:34,720 --> 05:28:39,992 SO IF THEY ARE INTERESTED IN 8208 05:28:39,992 --> 05:28:40,760 ACUTE FOUNDATIONAL MECHANISTIC 8209 05:28:40,760 --> 05:28:44,563 AND NOT FORWARD THINKING AT THAT 8210 05:28:44,563 --> 05:28:47,099 POINT, THE FUNCTIONAL, WE'RE NOT 8211 05:28:47,099 --> 05:28:49,568 THE PLACE TO COME TO, DOES 8212 05:28:49,568 --> 05:28:52,705 THAT -- IT'S REALLY BEST USE OF 8213 05:28:52,705 --> 05:28:55,107 FEDERAL DOLLARS ALL THE WAY 8214 05:28:55,107 --> 05:28:57,076 AROUND TO GO TO THE RIGHT FUNDER 8215 05:28:57,076 --> 05:28:59,378 FOR THE WORK YOU WANT TO DO AT 8216 05:28:59,378 --> 05:29:00,146 THAT TIME. 8217 05:29:00,146 --> 05:29:01,647 AND WE DO LOOK. 8218 05:29:01,647 --> 05:29:04,917 WE MAKE SURE, WE CHECK OUR 8219 05:29:04,917 --> 05:29:06,452 PROGRAM MANAGERS CHECK ABOUT 8220 05:29:06,452 --> 05:29:07,586 DUPLICATION, NO DUPLICATION, YOU 8221 05:29:07,586 --> 05:29:09,188 CAN'T HAVE THAT. 8222 05:29:09,188 --> 05:29:12,391 SO WE ADJUDICATE AND GET THAT 8223 05:29:12,391 --> 05:29:15,227 ALL STRAIGHTENED OUT. 8224 05:29:15,227 --> 05:29:15,795 8225 05:29:15,795 --> 05:29:18,531 >> I WANT TO UNDERSCORE TWO 8226 05:29:18,531 --> 05:29:19,298 THINGS TRISH SAID. 8227 05:29:19,298 --> 05:29:22,268 FOR THOSE THAT ARE INTERESTED, 8228 05:29:22,268 --> 05:29:24,236 YOU CAN JOIN THE V.A. CENTER, IF 8229 05:29:24,236 --> 05:29:25,871 THERE'S ONE IN YOUR AREA, IF YOU 8230 05:29:25,871 --> 05:29:26,872 GET A GRANT. 8231 05:29:26,872 --> 05:29:28,274 IT CAN BE NEGOTIATED. 8232 05:29:28,274 --> 05:29:30,776 THE SECOND THING ALL THE V.A. 8233 05:29:30,776 --> 05:29:32,812 RESEARCH IS ALSO INCLUDED IN THE 8234 05:29:32,812 --> 05:29:34,880 NIH REPORTER, SO IF YOU GO THERE 8235 05:29:34,880 --> 05:29:36,582 AND WANT TO SEE THE SCOPE OF 8236 05:29:36,582 --> 05:29:38,651 WHAT THEY ARE DOING, HOW IT 8237 05:29:38,651 --> 05:29:41,387 COMPLEMENTS US, YOU CAN LOOK UP 8238 05:29:41,387 --> 05:29:42,288 THERE. 8239 05:29:42,288 --> 05:29:43,556 ONE MINOR FRUSTRATION WE HAVEI 8240 05:29:43,556 --> 05:29:49,061 ANYBODY WITH A V.A. GRANT IS BY 8241 05:29:49,061 --> 05:29:50,162 DEFINITION A GOVERNMENT EMPLOYEE 8242 05:29:50,162 --> 05:29:51,597 AND CANNOT SERVE ON OUR ADVISORY 8243 05:29:51,597 --> 05:29:51,931 BOARD. 8244 05:29:51,931 --> 05:29:52,765 THERE'S GREAT PEOPLE BUT WHEN 8245 05:29:52,765 --> 05:29:54,433 THEY HAVE A V.A. GRANT WE CAN'T 8246 05:29:54,433 --> 05:29:57,069 HAVE THEM WORK WITH US FOR WHAT 8247 05:29:57,069 --> 05:30:03,409 YOU FOLKS ARE DOING. 8248 05:30:03,409 --> 05:30:09,849 SO, LET'S TRANSITION TO THE -- 8249 05:30:09,849 --> 05:30:10,082 OKAY. 8250 05:30:10,082 --> 05:30:13,686 THE FINAL SESSION WE HAVE TODAY 8251 05:30:13,686 --> 05:30:15,988 IS UPDATE, NIH RESPONSE TO THE 8252 05:30:15,988 --> 05:30:18,591 ACD WORKING GROUP ON PEOPLE WITH 8253 05:30:18,591 --> 05:30:19,125 DISABILITIES. 8254 05:30:19,125 --> 05:30:23,429 I HAVE THE HONOR OF INTRODUCING 8255 05:30:23,429 --> 05:30:25,831 ALISON CERNICH, DEPUTY DIRECTOR 8256 05:30:25,831 --> 05:30:27,600 OF NICHD, OUR FORMER 8257 05:30:27,600 --> 05:30:29,401 INSPIRATIONAL DIRECTOR OF THE 8258 05:30:29,401 --> 05:30:32,638 CENTER, SHE'S A BOARD CERTIFIED 8259 05:30:32,638 --> 05:30:33,272 NEUROPSYCHOLOGIST BY TRAINING, 8260 05:30:33,272 --> 05:30:37,443 AND SHE'S GOING TO PROVIDE US 8261 05:30:37,443 --> 05:30:37,776 WITH UPDATES. 8262 05:30:37,776 --> 05:30:40,112 >> I THINK THIS IS WORKING. 8263 05:30:40,112 --> 05:30:43,716 LET ME CHECK THAT. 8264 05:30:43,716 --> 05:30:45,017 8265 05:30:45,017 --> 05:30:46,218 OKAY. 8266 05:30:46,218 --> 05:30:48,287 A MINUTE TO SIT DOWN. 8267 05:30:48,287 --> 05:30:50,589 I KNOW HE'S GOT MY SLIDES. 8268 05:30:50,589 --> 05:30:52,892 THIS TEAM IS GREAT IN SUPPORTING 8269 05:30:52,892 --> 05:30:53,559 OUR MEETINGS. 8270 05:30:53,559 --> 05:30:56,061 SO THANK YOU. 8271 05:30:56,061 --> 05:30:57,730 SO I WANT TO THANK YOU FOR 8272 05:30:57,730 --> 05:30:58,164 WELCOMING ME. 8273 05:30:58,164 --> 05:31:00,366 I WISH I COULD HAVE BEEN HERE 8274 05:31:00,366 --> 05:31:02,101 ALL DAY TODAY BUT UNFORTUNATELY 8275 05:31:02,101 --> 05:31:04,236 THAT'S NOT QUITE HOW MY SCHEDULE 8276 05:31:04,236 --> 05:31:04,436 WORKS. 8277 05:31:04,436 --> 05:31:07,039 BUT WHERE I WILL BE TALKING 8278 05:31:07,039 --> 05:31:09,775 TODAY IS ABOUT WORK I'M 8279 05:31:09,775 --> 05:31:14,013 UNDERTAKING AT THE NIH LEVEL 8280 05:31:14,013 --> 05:31:16,982 WITH COLLEAGUES TO LOOK AT HOW 8281 05:31:16,982 --> 05:31:19,051 TO BETTER INCORPORATE THE 8282 05:31:19,051 --> 05:31:22,254 RECOMMENDATIONS BOTH FROM 8283 05:31:22,254 --> 05:31:24,323 ADVISORY COMMITTEE ON THE 8284 05:31:24,323 --> 05:31:26,625 DIRECTOR'S REPORT ON INCLUDING 8285 05:31:26,625 --> 05:31:27,626 INDIVIDUALS WITH DISABILITIES, 8286 05:31:27,626 --> 05:31:30,529 BUT ALSO NIH STRATEGIC PLAN ON 8287 05:31:30,529 --> 05:31:30,996 DYE DIVERSITY, EQUITY, 8288 05:31:30,996 --> 05:31:32,698 INCLUSION, AND ACCESSIBILITY. 8289 05:31:32,698 --> 05:31:34,833 SO, WE ARE -- I'M ONE OF THE 8290 05:31:34,833 --> 05:31:37,803 CO-CHAIRS OF THE SUBGROUP ON 8291 05:31:37,803 --> 05:31:38,904 INDIVIDUALS WITH DISABILITIES 8292 05:31:38,904 --> 05:31:40,673 UNDER OUR DIVERSITY STEERING 8293 05:31:40,673 --> 05:31:42,174 COMMITTEE AT THE NIH. 8294 05:31:42,174 --> 05:31:43,709 AND I'LL BE TALKING TO YOU ABOUT 8295 05:31:43,709 --> 05:31:46,212 HOW WE'RE GOING TO IMPLEMENT 8296 05:31:46,212 --> 05:31:48,547 THESE RECOMMENDATIONS. 8297 05:31:48,547 --> 05:31:51,150 SO NEXT SLIDE PLEASE. 8298 05:31:51,150 --> 05:31:52,484 SO, I THINK ALL OF YOU ARE 8299 05:31:52,484 --> 05:31:55,621 FAMILIAR WITH THIS BUT INCLUSION 8300 05:31:55,621 --> 05:31:56,956 OF PEOPLE WITH DISABILITIES IS 8301 05:31:56,956 --> 05:31:59,024 ESSENTIALLY A MAJOR FOCUS OF OUR 8302 05:31:59,024 --> 05:32:02,428 EFFORTS AROUND DISABILITY AND 8303 05:32:02,428 --> 05:32:08,467 ACCESSIBILITY AT NIH. 8304 05:32:08,467 --> 05:32:09,235 NEXT SLIDE PLEASE. 8305 05:32:09,235 --> 05:32:11,203 THIS IS A GREAT REPORT OUT OF 8306 05:32:11,203 --> 05:32:13,806 THE NATIONAL ACADEMY OF SCIENCE, 8307 05:32:13,806 --> 05:32:14,807 ENGINEERING AND MEDICINE, CAME 8308 05:32:14,807 --> 05:32:17,309 TO THE CONCLUSION WHILE WE ALL 8309 05:32:17,309 --> 05:32:20,913 BEAR THE COST OF EXCLUSION, IF 8310 05:32:20,913 --> 05:32:24,650 WE DON'T INVEST ESSENTIALLY THEY 8311 05:32:24,650 --> 05:32:27,052 SAID THE POPULATIONS NOT 8312 05:32:27,052 --> 05:32:29,989 INCLUDED BEAR THE GREATEST COST. 8313 05:32:29,989 --> 05:32:31,423 WE CANNOT TRANSLATE RESEARCH 8314 05:32:31,423 --> 05:32:33,525 FINDINGS TO FOLKS WHO MAY 8315 05:32:33,525 --> 05:32:35,261 BENEFIT THE MOST FROM ACCESS TO 8316 05:32:35,261 --> 05:32:36,028 NOVEL TREATMENTS. 8317 05:32:36,028 --> 05:32:42,835 AND WHAT WE KNOW IN LOOKING AT 8318 05:32:42,835 --> 05:32:44,536 OUR WORK IS THAT, YOU KNOW, WE 8319 05:32:44,536 --> 05:32:46,005 PRESCRIBE A LOT OF THINGS TO 8320 05:32:46,005 --> 05:32:47,640 PEOPLE OFF LABEL THAT HAVE NEVER 8321 05:32:47,640 --> 05:32:48,307 BEEN TESTED. 8322 05:32:48,307 --> 05:32:50,276 SO WE KNOW FOLKS WITH SPINAL 8323 05:32:50,276 --> 05:32:52,444 CORD INJURY, FOR EXAMPLE, 8324 05:32:52,444 --> 05:32:54,213 PROCESS MEDICATIONS AND 8325 05:32:54,213 --> 05:32:55,080 METABOLIZE MEDICATIONS 8326 05:32:55,080 --> 05:32:55,814 DIFFERENTLY. 8327 05:32:55,814 --> 05:32:57,383 IF WE DON'T STUDY THOSE 8328 05:32:57,383 --> 05:32:58,484 TREATMENTS IN PEOPLE WITH SPINAL 8329 05:32:58,484 --> 05:33:00,319 CORD INJURY THEN WE HAVE THE 8330 05:33:00,319 --> 05:33:02,288 POSSIBILITY OF LEADING TO 8331 05:33:02,288 --> 05:33:02,988 ADVERSE EVENTS. 8332 05:33:02,988 --> 05:33:04,123 SOMETIMES WE DON'T UNDERSTAND 8333 05:33:04,123 --> 05:33:05,891 THE EFFICACY OF THE TREATMENTS 8334 05:33:05,891 --> 05:33:06,959 IN THE POPULATIONS BUT WE 8335 05:33:06,959 --> 05:33:08,661 PRESCRIBE THEM BECAUSE THEY ARE 8336 05:33:08,661 --> 05:33:11,964 THE BEST AVAILABLE. 8337 05:33:11,964 --> 05:33:14,667 AND SO WE REALLY HAVE A NEED TO 8338 05:33:14,667 --> 05:33:14,900 PROTECT. 8339 05:33:14,900 --> 05:33:18,170 WE SAY THIS FOR PREGNANT AND 8340 05:33:18,170 --> 05:33:19,905 LACTATING WOMEN BUT IT APPLIES 8341 05:33:19,905 --> 05:33:20,239 HERE. 8342 05:33:20,239 --> 05:33:22,041 IF WE DON'T INCLUDE FOLKS IN 8343 05:33:22,041 --> 05:33:23,642 MEDICAL RESEARCH WE'RE NOT ABLE 8344 05:33:23,642 --> 05:33:25,044 TO PROTECT THEM THROUGH RESEARCH 8345 05:33:25,044 --> 05:33:26,945 WHILE WE TRY TO -- USUALLY 8346 05:33:26,945 --> 05:33:31,116 PEOPLE ARE TRYING TO PROTECT OR 8347 05:33:31,116 --> 05:33:32,217 EXCLUDES THEM FOR RESEARCH 8348 05:33:32,217 --> 05:33:33,419 INSTEAD OF USING RESEARCH TO 8349 05:33:33,419 --> 05:33:35,054 BETTER THEIR HEALTH AND 8350 05:33:35,054 --> 05:33:35,321 WELLNESS. 8351 05:33:35,321 --> 05:33:37,122 SO THIS LEADS TO LACK OF 8352 05:33:37,122 --> 05:33:38,090 INFORMATION WHEN FOLKS ARE 8353 05:33:38,090 --> 05:33:41,827 TRYING TO TREAT PEOPLE WITH 8354 05:33:41,827 --> 05:33:42,494 DISABILITIES. 8355 05:33:42,494 --> 05:33:45,230 SO, LESS THAN 7% OF OUR FUNDING 8356 05:33:45,230 --> 05:33:46,332 ADDRESSES DISABILITY THAT'S NOT 8357 05:33:46,332 --> 05:33:48,467 WITHIN THE CONTEXT OF DISEASE. 8358 05:33:48,467 --> 05:33:51,036 SO WE HAVE A LOT OF 8359 05:33:51,036 --> 05:33:52,237 DISEASE-BASED RESEARCH WITH VERY 8360 05:33:52,237 --> 05:33:54,540 LITTLE IN TERMS OF HEALTH AND 8361 05:33:54,540 --> 05:33:55,240 WELLNESS. 8362 05:33:55,240 --> 05:33:57,042 THERE'S REALLY NO DATA ON THE 8363 05:33:57,042 --> 05:33:59,478 ACTIVE INCLUSION OF PEOPLE WITH 8364 05:33:59,478 --> 05:34:00,446 DISABILITIES IN NIH-FUNDED 8365 05:34:00,446 --> 05:34:00,713 RESEARCH. 8366 05:34:00,713 --> 05:34:02,948 WE DO NOT COLLECT THIS DATA THE 8367 05:34:02,948 --> 05:34:06,018 WAY WE DO FOR, SAY, GENDER, 8368 05:34:06,018 --> 05:34:07,753 RACE, ETHNICITY. 8369 05:34:07,753 --> 05:34:09,722 AND WE DO HAVE MANDATES THAT SET 8370 05:34:09,722 --> 05:34:12,057 THE STANDARDS FOR DATA 8371 05:34:12,057 --> 05:34:12,825 COLLECTION AND PROHIBIT 8372 05:34:12,825 --> 05:34:14,460 DISCRIMINATION BASED ON 8373 05:34:14,460 --> 05:34:16,895 DISABILITY THAT GOVERN 8374 05:34:16,895 --> 05:34:17,863 ACTIVITIES INCLUDING 8375 05:34:17,863 --> 05:34:20,766 REHABILITATION ACT, AMERICANS 8376 05:34:20,766 --> 05:34:21,467 WITH DISABILITY ACT, AFFORDABLE 8377 05:34:21,467 --> 05:34:22,468 CARE ACT. 8378 05:34:22,468 --> 05:34:23,335 INCLUSION MATTERS. 8379 05:34:23,335 --> 05:34:25,404 WE HAVE TO SUPPORT RESEARCH THAT 8380 05:34:25,404 --> 05:34:27,806 IS REPRESENTATIVE OF THE U.S. 8381 05:34:27,806 --> 05:34:28,273 POPULATION. 8382 05:34:28,273 --> 05:34:32,077 WE KNOW HEALTH CARE COSTS FOR 8383 05:34:32,077 --> 05:34:33,512 PEOPLE WITH DISABILITIES ARE 4.8 8384 05:34:33,512 --> 05:34:34,513 TIMES HIGHER THAN WITHOUT 8385 05:34:34,513 --> 05:34:35,013 DISABILITY. 8386 05:34:35,013 --> 05:34:36,615 WE ALSO KNOW PUBLIC HEALTH 8387 05:34:36,615 --> 05:34:38,317 RESOURCES ARE TIED TO THE 8388 05:34:38,317 --> 05:34:41,186 EVIDENCE OF HEALTH NEEDS, 8389 05:34:41,186 --> 05:34:42,287 DISPARITIES, INEQUITIES. 8390 05:34:42,287 --> 05:34:44,256 AND REALLY WE HAVE TO DO A 8391 05:34:44,256 --> 05:34:45,557 LITTLE BIT MORE BECAUSE WE CAN'T 8392 05:34:45,557 --> 05:34:49,294 IMPROVE WHAT WE DO NOT MEASURE. 8393 05:34:49,294 --> 05:34:51,597 NEXT SLIDE PLEASE. 8394 05:34:51,597 --> 05:34:53,031 AND WHY ARE DISABLED PEOPLE 8395 05:34:53,031 --> 05:34:54,333 UNDERREPRESENTED IN RESEARCH 8396 05:34:54,333 --> 05:34:54,867 PARTICIPATION? 8397 05:34:54,867 --> 05:34:55,768 WELL, I THINK WE'VE HEARD QUITE 8398 05:34:55,768 --> 05:34:57,736 A BIT THIS YEAR ABOUT ABLEISM 8399 05:34:57,736 --> 05:35:00,439 AND THIS HAS BEEN AROUND FOR A 8400 05:35:00,439 --> 05:35:01,206 VERY LONG TIME. 8401 05:35:01,206 --> 05:35:02,541 AND THERE ARE MANY THINGS THAT 8402 05:35:02,541 --> 05:35:05,611 LEAD TO THIS BUT IT'S 8403 05:35:05,611 --> 05:35:07,346 ESSENTIALLY THE SAME AS OTHER 8404 05:35:07,346 --> 05:35:10,416 ISMS THAT LEAD TO 8405 05:35:10,416 --> 05:35:13,819 DISCRIMINATION, SOCIAL 8406 05:35:13,819 --> 05:35:15,020 PREJUDICE, WE SAW QUALITY OF 8407 05:35:15,020 --> 05:35:16,355 LIFE DURING THE PANDEMIC, WE 8408 05:35:16,355 --> 05:35:17,356 KNOW FROM RESEARCH THAT QUALITY 8409 05:35:17,356 --> 05:35:19,091 OF LIFE FOR PEOPLE WITH 8410 05:35:19,091 --> 05:35:21,293 DISABILITIES IS OFTEN HIGHER 8411 05:35:21,293 --> 05:35:22,828 THAN THOSE WITHOUT DISABILITY. 8412 05:35:22,828 --> 05:35:25,531 AND THEN THERE'S THIS SORT OF 8413 05:35:25,531 --> 05:35:27,499 NEED TO PROTECT AND THIS CAME UP 8414 05:35:27,499 --> 05:35:29,501 LAST WEEK IN A VERY HEATED 8415 05:35:29,501 --> 05:35:32,137 EXCHANGE IN AN FDA WORKSHOP. 8416 05:35:32,137 --> 05:35:34,006 SO, I THINK THAT IS SOME 8417 05:35:34,006 --> 05:35:37,142 PRESUMPTION THAT WE HAVE AROUND 8418 05:35:37,142 --> 05:35:39,144 PEOPLE WITH DISABILITY THAT 8419 05:35:39,144 --> 05:35:40,012 REFLECT ABLEISM. 8420 05:35:40,012 --> 05:35:42,281 THE OTHER IS MEDICAL MODEL. 8421 05:35:42,281 --> 05:35:45,250 THIS IS OFTEN PRESUMPTIVE MODEL, 8422 05:35:45,250 --> 05:35:47,753 I THINK PRESUMPTIVE MODEL HERE 8423 05:35:47,753 --> 05:35:51,490 AT THE NATIONAL INSTITUTES OF 8424 05:35:51,490 --> 05:35:52,391 HEALTH FOCUSING ON ILLNESS OF 8425 05:35:52,391 --> 05:35:53,358 DISEASE RATHER THAN FUNCTION. 8426 05:35:53,358 --> 05:35:55,127 THERE ARE MANY THINGS THAT 8427 05:35:55,127 --> 05:35:55,861 CONTRIBUTE INCLUDING THE 8428 05:35:55,861 --> 05:35:58,730 ENVIRONMENT IN WHICH THE PERSON 8429 05:35:58,730 --> 05:35:59,398 IS LIVING. 8430 05:35:59,398 --> 05:36:01,266 WE'VE ALL HEARD OF THE EXAMPLE 8431 05:36:01,266 --> 05:36:02,968 OF THE CURB CUT. 8432 05:36:02,968 --> 05:36:04,536 THE FACT IS YOU CAN'T BE MOBILE 8433 05:36:04,536 --> 05:36:06,505 IN YOUR ENVIRONMENT IF IT'S NOT 8434 05:36:06,505 --> 05:36:08,140 AN ENVIRONMENT THAT IS ADAPTED 8435 05:36:08,140 --> 05:36:08,807 TO YOUR NEEDS. 8436 05:36:08,807 --> 05:36:11,643 AND SO WE HAVE TO MOVE TO MORE 8437 05:36:11,643 --> 05:36:13,745 OF A SOCIAL ENVIRONMENTAL MODEL 8438 05:36:13,745 --> 05:36:14,813 RATHER THAN MEDICAL MODEL. 8439 05:36:14,813 --> 05:36:17,549 THE OTHER IS THE COST AND 8440 05:36:17,549 --> 05:36:17,883 COMPLEXITY. 8441 05:36:17,883 --> 05:36:19,184 THERE'S THAT ASSUMPTION THAT IF 8442 05:36:19,184 --> 05:36:20,752 YOU HAVE TO PROVIDE 8443 05:36:20,752 --> 05:36:23,255 ACCOMMODATIONS OR IF YOU HAVE TO 8444 05:36:23,255 --> 05:36:24,423 PROVIDE EXCEPTIONS TO INCLUDE 8445 05:36:24,423 --> 05:36:25,524 PEOPLE WITH DISABILITY THAT'S 8446 05:36:25,524 --> 05:36:27,025 GOING TO IMPACT FEASIBILITY OF 8447 05:36:27,025 --> 05:36:28,260 YOUR STUDY. 8448 05:36:28,260 --> 05:36:32,097 YOU'LL HAVE TO GET PROXY 8449 05:36:32,097 --> 05:36:32,698 CONSENT, MORE RESOURCES, 8450 05:36:32,698 --> 05:36:34,733 ACCOMMODATIONS YOU NEED TO 8451 05:36:34,733 --> 05:36:35,167 PROVIDE. 8452 05:36:35,167 --> 05:36:37,102 THESE ARE ASSUMPTION, NOT ALWAYS 8453 05:36:37,102 --> 05:36:39,238 REALITIES, AND THEY ARE THE SAME 8454 05:36:39,238 --> 05:36:41,206 IF YOU DO THE RESEARCH FOR 8455 05:36:41,206 --> 05:36:42,307 MEDICAL ILLNESS AS THEY ARE IF 8456 05:36:42,307 --> 05:36:44,710 YOU'RE DOING IT WITH RESPECT TO 8457 05:36:44,710 --> 05:36:45,777 HEALTH AND WELLNESS. 8458 05:36:45,777 --> 05:36:48,747 THERE'S ALSO THIS SORT OF DATA 8459 05:36:48,747 --> 05:36:51,049 ASSUMPTION THAT PEOPLE WITH 8460 05:36:51,049 --> 05:36:53,118 DISABILITY WOULD INTRODUCE 8461 05:36:53,118 --> 05:36:53,719 HETEROGENEOUS CHARACTERISTICS 8462 05:36:53,719 --> 05:36:55,654 THAT MAKE DATA MESSY. 8463 05:36:55,654 --> 05:36:57,289 I'VE SEEN ENOUGH MESSY DATA AS A 8464 05:36:57,289 --> 05:36:58,490 RESULT OF SERVING IN THIS 8465 05:36:58,490 --> 05:37:00,225 POSITION I SUGGEST MOST STUDIES 8466 05:37:00,225 --> 05:37:01,159 ARE MESSY FOR VARIOUS REASONS 8467 05:37:01,159 --> 05:37:03,729 AND THIS IS NOT A GREAT 8468 05:37:03,729 --> 05:37:04,930 ASSUMPTION TO HOLD. 8469 05:37:04,930 --> 05:37:05,931 NEXT SLIDE PLEASE. 8470 05:37:05,931 --> 05:37:07,900 THE OTHER THING WE HAVE TO DO A 8471 05:37:07,900 --> 05:37:09,768 BETTER JOB OF IS INCREASE 8472 05:37:09,768 --> 05:37:12,771 OPTIONS IN CAREER PATHS FOR 8473 05:37:12,771 --> 05:37:16,575 PEOPLE WITH DISABILITY IN 8474 05:37:16,575 --> 05:37:17,342 SCIENCE POSITIONS. 8475 05:37:17,342 --> 05:37:18,544 DISABILITY IS NOT THE ONLY THING 8476 05:37:18,544 --> 05:37:19,311 ABOUT A PERSON. 8477 05:37:19,311 --> 05:37:22,347 IT IS A PART OF A PERSON JUST 8478 05:37:22,347 --> 05:37:25,884 LIKE GENDER, RACE, JUST LIKE 8479 05:37:25,884 --> 05:37:27,085 ANYTHING ELSE DEFINES THEM, THE 8480 05:37:27,085 --> 05:37:28,921 FACT THEY LIKE DOGS INSTEAD OF 8481 05:37:28,921 --> 05:37:29,922 CATS, A SPECIAL PREFERENCE. 8482 05:37:29,922 --> 05:37:31,023 I FEEL SORRY FOR CAT PEOPLE 8483 05:37:31,023 --> 05:37:32,524 BECAUSE THEY HAVE MADE THE WRONG 8484 05:37:32,524 --> 05:37:34,293 CHOICE BUT I THINK THAT 8485 05:37:34,293 --> 05:37:37,129 GENERALLY WE DO NOT TAKE THIS 8486 05:37:37,129 --> 05:37:38,964 SERIOUSLY, RIGHT? 8487 05:37:38,964 --> 05:37:41,733 WE KNOW ABOUT 1.2% OF FUNDED 8488 05:37:41,733 --> 05:37:45,437 INVESTIGATORS AND 3% OF 8489 05:37:45,437 --> 05:37:46,672 DIVERSITY SUPPLEMENT RECIPIENTS 8490 05:37:46,672 --> 05:37:48,974 REPORTED DISABILITY IN OUR 8491 05:37:48,974 --> 05:37:50,342 SYSTEM, OFTEN NOT REPORTED. 8492 05:37:50,342 --> 05:37:52,010 FROM PERSPECTIVE WE GET THE DATA 8493 05:37:52,010 --> 05:37:53,879 AT ALL, THIS IS WHAT WE HAVE. 8494 05:37:53,879 --> 05:37:56,048 A LOT OF PEOPLE DO NOT REPORT 8495 05:37:56,048 --> 05:37:57,716 THIS BECAUSE OF THE STIGMA 8496 05:37:57,716 --> 05:37:58,784 RELATED AND/OR POTENTIAL FOR 8497 05:37:58,784 --> 05:38:01,520 THEM TO FEEL THEY ARE GOING TO 8498 05:38:01,520 --> 05:38:03,155 GET REPERCUSSIONS AT THEIR 8499 05:38:03,155 --> 05:38:03,589 ORGANIZATION. 8500 05:38:03,589 --> 05:38:06,325 AND SO WE HAVE TO RELY ON OTHER 8501 05:38:06,325 --> 05:38:07,125 SOURCES. 8502 05:38:07,125 --> 05:38:10,295 THERE WAS A PUBLICATION LAST 8503 05:38:10,295 --> 05:38:11,830 WEEK, RECENT SURVEY PUBLISHED 8504 05:38:11,830 --> 05:38:13,932 THAT DOCUMENTS THERE ARE LOWER 8505 05:38:13,932 --> 05:38:15,500 SALARY LEVELS FOR DOCTORATE 8506 05:38:15,500 --> 05:38:18,503 RECIPIENTS WITH DISABILITIES IN 8507 05:38:18,503 --> 05:38:20,672 SCIENCE, TECHNOLOGY, ENGINEERING 8508 05:38:20,672 --> 05:38:23,308 AND MATH THAN WOULD THE, AND 8509 05:38:23,308 --> 05:38:24,843 UNDERREPRESENTED AT HIGHER 8510 05:38:24,843 --> 05:38:26,278 FACULTY RANKS AT INSTITUTIONS. 8511 05:38:26,278 --> 05:38:28,413 SO, WE'RE NOT DOING A GREAT JOB 8512 05:38:28,413 --> 05:38:32,084 AS A FIELD, I THINK WE CAN DO 8513 05:38:32,084 --> 05:38:32,417 BETTER. 8514 05:38:32,417 --> 05:38:33,151 NEXT SLIDE PLEASE. 8515 05:38:33,151 --> 05:38:38,123 SO WHAT ARE WE DOING AT THE NIH? 8516 05:38:38,123 --> 05:38:39,091 NEXT SLIDE. 8517 05:38:39,091 --> 05:38:43,929 SO, THERE HAVE BEEN TWO 8518 05:38:43,929 --> 05:38:45,764 COMPLEMENTARY EFFORTS, RUNNING 8519 05:38:45,764 --> 05:38:47,432 IN PARALLEL, TO PROVIDE 8520 05:38:47,432 --> 05:38:48,600 STRATEGIC FRAMEWORK TO IMPROVE 8521 05:38:48,600 --> 05:38:49,267 DISABILITY INCLUSION. 8522 05:38:49,267 --> 05:38:50,802 MANY OF YOU MAY BE FAMILIAR WITH 8523 05:38:50,802 --> 05:38:52,237 ADVISORY COMMITTEE TO THE 8524 05:38:52,237 --> 05:38:54,072 DIRECTOR WORKING GROUP ON 8525 05:38:54,072 --> 05:38:55,741 DIVERSITY, THERE'S A SUBGROUP ON 8526 05:38:55,741 --> 05:39:00,912 INDIVIDUALS WITH DISABILITIES. 8527 05:39:00,912 --> 05:39:03,081 THEY PROVIDED A ROADMAP FOR 8528 05:39:03,081 --> 05:39:03,548 ABLEISM. 8529 05:39:03,548 --> 05:39:07,586 I NEED TO CORRECT THAT SLIDE. 8530 05:39:07,586 --> 05:39:10,389 IN DECEMBER OF 22 THEY ASKED TO 8531 05:39:10,389 --> 05:39:11,823 UPDATE THE MISSION STATEMENT, 8532 05:39:11,823 --> 05:39:14,259 ESTABLISH AN NIH DISABILITY 8533 05:39:14,259 --> 05:39:16,428 EQUITY AND ACCESS COORDINATING 8534 05:39:16,428 --> 05:39:17,529 COMMITTEE, DEVELOP NIH-WIDE 8535 05:39:17,529 --> 05:39:20,599 EFFORT TO IDENTIFY AND ADDRESS 8536 05:39:20,599 --> 05:39:25,203 STRUCTURAL ABLEISM AND PROMOTE 8537 05:39:25,203 --> 05:39:27,272 DISABILITY INCLUSION, ENSURE DES 8538 05:39:27,272 --> 05:39:28,940 BUILT INCLUSION, MAINTAIN 8539 05:39:28,940 --> 05:39:30,776 ACCOUNTABILITY FOR THESE 8540 05:39:30,776 --> 05:39:31,109 EFFORTS. 8541 05:39:31,109 --> 05:39:32,310 SIMULTANEOUSLY, THE NIH WAS 8542 05:39:32,310 --> 05:39:34,513 DEVELOPING A STRATEGIC PLAN FOR 8543 05:39:34,513 --> 05:39:35,480 DIVERSITY, EQUITY, INCLUSION, 8544 05:39:35,480 --> 05:39:37,382 AND ACCESSIBILITY. 8545 05:39:37,382 --> 05:39:39,317 AND THIS INCLUDES PROMOTION OF 8546 05:39:39,317 --> 05:39:41,853 INCLUSION AND ABILITY TO ADDRESS 8547 05:39:41,853 --> 05:39:43,488 ABLEISM IN TRAINING, 8548 05:39:43,488 --> 05:39:45,457 COMMUNICATION, POLICIES AND 8549 05:39:45,457 --> 05:39:46,124 STRUCTURES, TO ENSURE 8550 05:39:46,124 --> 05:39:47,859 ANTI-ABLEISM IS A CORE COMPONENT 8551 05:39:47,859 --> 05:39:49,194 OF OUR EFFORTS. 8552 05:39:49,194 --> 05:39:51,897 SO, THIS IS A FIVE-YEAR PLAN 8553 05:39:51,897 --> 05:39:55,300 JUST RECENTLY LAUNCHED IN MARCH 8554 05:39:55,300 --> 05:39:55,734 OF 2023. 8555 05:39:55,734 --> 05:39:58,470 AND SO THIS IS GOING TO BE AN 8556 05:39:58,470 --> 05:40:03,308 ALL OF NIH EFFORT, TRANSFORMING 8557 05:40:03,308 --> 05:40:04,509 WAIT OUR ORGANIZATION WORKS AND 8558 05:40:04,509 --> 05:40:07,913 ALSO TO THINK ABOUT THIS WITH 8559 05:40:07,913 --> 05:40:09,114 RESPECT TO NIH'S RESEARCH. 8560 05:40:09,114 --> 05:40:10,615 AND SO WE'RE GOING TO TALK ABOUT 8561 05:40:10,615 --> 05:40:11,817 HOW WE'RE GOING TO ADDRESS THIS 8562 05:40:11,817 --> 05:40:13,151 IN A MOMENT. 8563 05:40:13,151 --> 05:40:14,820 NEXT SLIDE PLEASE. 8564 05:40:14,820 --> 05:40:17,756 SO TO START WITH THE ACD REPORT 8565 05:40:17,756 --> 05:40:19,291 THERE WAS A SPECIFIC 8566 05:40:19,291 --> 05:40:20,058 RECOMMENDATION AROUND THE 8567 05:40:20,058 --> 05:40:20,826 MISSION STATEMENT. 8568 05:40:20,826 --> 05:40:23,562 SO WE ISSUED A REQUEST FOR 8569 05:40:23,562 --> 05:40:25,630 INFORMATION THIS PAST YEAR. 8570 05:40:25,630 --> 05:40:26,798 OUR CURRENT MISSION STATEMENT TO 8571 05:40:26,798 --> 05:40:28,366 SEEK KNOWLEDGE ABOUT THE NATURE 8572 05:40:28,366 --> 05:40:29,668 AND BEHAVIOR OF SYSTEMS AND 8573 05:40:29,668 --> 05:40:32,671 APPLICATION OF THAT KNOWLEDGE TO 8574 05:40:32,671 --> 05:40:37,876 ENHANCE HEALTH, LENGTHEN LIFE. 8575 05:40:37,876 --> 05:40:41,313 IF YOU'RE FAMILIAR WITH THE 8576 05:40:41,313 --> 05:40:43,115 REPORT, THE GROUP REFLECTED ON 8577 05:40:43,115 --> 05:40:46,451 THE FACT, AND THIS WAS ACTUALLY 8578 05:40:46,451 --> 05:40:47,986 REVISED NOT VERY LONG AGO, RIGHT 8579 05:40:47,986 --> 05:40:49,721 AROUND THE TIME WHEN I JOINED 8580 05:40:49,721 --> 05:40:51,923 NIH, NOT LONG AFTER THAT, IT 8581 05:40:51,923 --> 05:40:54,326 USED TO SAY ELIMINATE ILLNESS 8582 05:40:54,326 --> 05:40:56,094 AND DISABILITY, AND DISABILITY 8583 05:40:56,094 --> 05:40:58,163 COMMUNITY WITHIN THE NIH SAID 8584 05:40:58,163 --> 05:40:58,797 ELIMINATING DOESN'T FEEL GOOD 8585 05:40:58,797 --> 05:41:00,565 WHEN YOU SAY YOU'RE TRYING TO 8586 05:41:00,565 --> 05:41:03,602 ELIMINATE A PART OF WHO I AM. 8587 05:41:03,602 --> 05:41:05,470 AND THE ACD GROUP SAID THIS IS 8588 05:41:05,470 --> 05:41:06,772 STILL NOT OKAY. 8589 05:41:06,772 --> 05:41:08,573 YOU'RE STILL TRYING TO REDUCE 8590 05:41:08,573 --> 05:41:10,108 DISABILITY, TRYING TO REDUCE ME 8591 05:41:10,108 --> 05:41:11,743 OUT OF THE EQUATION. 8592 05:41:11,743 --> 05:41:13,912 FOR SOME FOLKS, MANY OF US KNOW 8593 05:41:13,912 --> 05:41:15,781 THIS WHO WORKED WITH THE 8594 05:41:15,781 --> 05:41:16,982 DISABILITY COMMUNITY, THERE ARE 8595 05:41:16,982 --> 05:41:20,252 DIFFERENT FEELINGS AND POSTURES 8596 05:41:20,252 --> 05:41:23,155 AROUND DISABILITY AS AN 8597 05:41:23,155 --> 05:41:25,390 IDENTITY, A CULTURE, VERSUS 8598 05:41:25,390 --> 05:41:26,391 DISABILITY AS SOMETHING THAT 8599 05:41:26,391 --> 05:41:29,995 SOMEBODY WOULD NOT LIKE TO HAVE. 8600 05:41:29,995 --> 05:41:31,963 OR THEY ARE A PERSON AND THE 8601 05:41:31,963 --> 05:41:33,098 DISABILITY IS PART OF THEM BUT 8602 05:41:33,098 --> 05:41:34,566 NOT ALL WHO HAVE THEY ARE. 8603 05:41:34,566 --> 05:41:36,535 WE SEE TENSION IN THE COMMUNITY. 8604 05:41:36,535 --> 05:41:38,870 EITHER WAY THIS ISN'T GOOD. 8605 05:41:38,870 --> 05:41:40,071 SO, THE PROPOSED REVISED MISSION 8606 05:41:40,071 --> 05:41:42,140 STATEMENT WAS PUT OUT FOR PUBLIC 8607 05:41:42,140 --> 05:41:43,675 COMMENT, THE NEW ONE INCLUDES 8608 05:41:43,675 --> 05:41:45,644 LANGUAGE THAT SAYS TO OPTIMIZE 8609 05:41:45,644 --> 05:41:48,480 HEALTH AND PREVENT OR REDUCE 8610 05:41:48,480 --> 05:41:49,815 ILLNESS FOR ALL PEOPLE. 8611 05:41:49,815 --> 05:41:51,550 IN THIS WAY I THINK WHAT WE WERE 8612 05:41:51,550 --> 05:41:55,053 TRYING TO GET TO WAS WE WANT TO 8613 05:41:55,053 --> 05:41:56,021 MAKE SURE EVERYBODY IS HEALTHY 8614 05:41:56,021 --> 05:41:57,889 AND WELL AND WE'RE GOING TO 8615 05:41:57,889 --> 05:41:58,990 PREVENT OR REDUCE ILLNESS FOR 8616 05:41:58,990 --> 05:41:59,624 PEOPLE. 8617 05:41:59,624 --> 05:42:02,394 SOME OF THIS MIMICS SOME CHANGES 8618 05:42:02,394 --> 05:42:04,930 THAT WE MADE TO NICHD'S MISSION 8619 05:42:04,930 --> 05:42:08,200 STATEMENT AND TO OUR VISION 8620 05:42:08,200 --> 05:42:08,733 STATEMENT. 8621 05:42:08,733 --> 05:42:10,769 SO, THIS CLOSED IN NOVEMBER. 8622 05:42:10,769 --> 05:42:12,137 AND THE ANALYSIS OF THE 8623 05:42:12,137 --> 05:42:12,971 RESPONSES IS ONGOING. 8624 05:42:12,971 --> 05:42:14,339 I BELIEVE THERE'S GOING TO BE A 8625 05:42:14,339 --> 05:42:16,074 REPORT OUT AT THE ADVISORY 8626 05:42:16,074 --> 05:42:17,843 COMMITTEE TO THE DIRECTOR 8627 05:42:17,843 --> 05:42:20,478 RELATIVELY SOON ON WHAT WE ARE 8628 05:42:20,478 --> 05:42:23,048 HEARING FROM THE COMMUNITY. 8629 05:42:23,048 --> 05:42:23,949 NEXT SLIDE PLEASE. 8630 05:42:23,949 --> 05:42:25,817 THE OTHER THING THAT HAS CHANGED 8631 05:42:25,817 --> 05:42:28,687 IN THE PAST YEAR IS THAT THERE 8632 05:42:28,687 --> 05:42:31,323 HAS BEEN AN OFFICIAL DESIGNATION 8633 05:42:31,323 --> 05:42:33,191 OF PEOPLE WITH DISABILITY AS A 8634 05:42:33,191 --> 05:42:34,192 HEALTH DISPARITY POPULATION SO 8635 05:42:34,192 --> 05:42:35,927 MANY OF YOU ARE FAMILIAR WITH 8636 05:42:35,927 --> 05:42:39,197 THE LITERATURE IN THIS AREA 8637 05:42:39,197 --> 05:42:42,467 DATING BACK TO SOME WORK ON 8638 05:42:42,467 --> 05:42:44,336 ESTABLISHING HEALTH DISPARITIES 8639 05:42:44,336 --> 05:42:46,104 FOR PEOPLE WITH DISABILITIES 8640 05:42:46,104 --> 05:42:51,343 LOOKING AT DATA FROM CDC, AND 8641 05:42:51,343 --> 05:42:54,079 LOOKING AT A LACK OF EQUITY WITH 8642 05:42:54,079 --> 05:42:56,281 RESPECT TO, SAY, PREVENTIVE 8643 05:42:56,281 --> 05:42:57,782 HEALTH PROVISION, UPTAKE OF 8644 05:42:57,782 --> 05:42:59,451 IMMUNIZATION, RATES OF OBESITY, 8645 05:42:59,451 --> 05:43:01,219 RATES OF SMOKING. 8646 05:43:01,219 --> 05:43:03,622 AND GENERALLY SEEING THAT FOLKS 8647 05:43:03,622 --> 05:43:05,790 WITH DISABILITY HAD DIFFERENTIAL 8648 05:43:05,790 --> 05:43:07,025 OUTCOMES AND EVEN IF THEY HAD 8649 05:43:07,025 --> 05:43:09,427 INSURANCE WERE LESS LIKELY TO 8650 05:43:09,427 --> 05:43:10,195 GET PREVENTIVE SERVICES. 8651 05:43:10,195 --> 05:43:13,265 AND SO THIS WAS A MAJOR MOVE IN 8652 05:43:13,265 --> 05:43:17,769 SEPTEMBER OF THIS YEAR, SO 8653 05:43:17,769 --> 05:43:18,670 ELISEO, THE DIRECTOR OF NATIONAL 8654 05:43:18,670 --> 05:43:19,237 INSTITUTE OF MENTAL HEALTH 8655 05:43:19,237 --> 05:43:21,539 ANNOUNCED THIS AT THE END OF 8656 05:43:21,539 --> 05:43:22,474 SEPTEMBER AFTER CONSULTATION 8657 05:43:22,474 --> 05:43:23,909 WITH THE DIRECTOR OF THE AGENCY 8658 05:43:23,909 --> 05:43:25,210 FOR HEALTH CARE RESEARCH AND 8659 05:43:25,210 --> 05:43:27,279 QUALITY, WHY IS THAT THE WAY 8660 05:43:27,279 --> 05:43:28,813 THAT WENT? 8661 05:43:28,813 --> 05:43:30,682 BECAUSE BY LEGISLATION THAT'S 8662 05:43:30,682 --> 05:43:33,318 HOW THAT'S DESIGNATED FOR THE 8663 05:43:33,318 --> 05:43:35,587 DECISIONAL AUTHORITY. 8664 05:43:35,587 --> 05:43:38,223 WHAT THIS DOES IS HELPS 8665 05:43:38,223 --> 05:43:40,225 ENCOURAGE RESEARCH OF THESE 8666 05:43:40,225 --> 05:43:41,526 POPULATIONS AND DIANA MENTIONED 8667 05:43:41,526 --> 05:43:42,994 THESE THIS MORNING BUT THEY ARE 8668 05:43:42,994 --> 05:43:44,262 WORTH REPEATING BECAUSE THEY ARE 8669 05:43:44,262 --> 05:43:48,300 HUGE CHANGES AT THE NIH. 8670 05:43:48,300 --> 05:43:49,968 NEXT SLIDE PLEASE. 8671 05:43:49,968 --> 05:43:53,104 SO, IN CONJUNCTION WITH THAT 8672 05:43:53,104 --> 05:43:55,840 ANNOUNCEMENT OF THE DESIGNATION, 8673 05:43:55,840 --> 05:43:57,976 THERE WAS ALSO ISSUANCE OF A 8674 05:43:57,976 --> 05:43:59,144 PROGRAM ANNOUNCEMENT WITH 8675 05:43:59,144 --> 05:44:00,812 SPECIAL REVIEW RELATED TO HEALTH 8676 05:44:00,812 --> 05:44:02,781 AND HEALTH CARE DISPARITIES IN 8677 05:44:02,781 --> 05:44:03,982 PERSONS LIVING WITH DISABILITIES 8678 05:44:03,982 --> 05:44:06,051 TO SUPPORT NOVEL AND INNOVATIVE 8679 05:44:06,051 --> 05:44:07,585 RESEARCH THAT EXAMINES AND 8680 05:44:07,585 --> 05:44:08,887 INTERVENES ON UNDERLYING 8681 05:44:08,887 --> 05:44:16,127 MULTI-LEVEL CAUSES, PATHWAYS AND 8682 05:44:16,127 --> 05:44:17,562 FACTORS ADVERSELY IMPACTING AS 8683 05:44:17,562 --> 05:44:19,631 THEY INTERSECT WITH OTHER HEALTH 8684 05:44:19,631 --> 05:44:21,099 DISPARITIES. 8685 05:44:21,099 --> 05:44:21,833 THE FIRST APPLICATION DEADLINE, 8686 05:44:21,833 --> 05:44:24,669 DO NOTE THIS IS IN FEBRUARY. 8687 05:44:24,669 --> 05:44:25,670 AND THERE ARE MULTIPLE 8688 05:44:25,670 --> 05:44:26,538 APPLICATION AND RECEIPT DATES 8689 05:44:26,538 --> 05:44:28,173 FOR THIS ONE SO PLEASE GET THE 8690 05:44:28,173 --> 05:44:29,407 WORD OUT TO YOUR COMMUNITIES 8691 05:44:29,407 --> 05:44:33,211 BECAUSE THIS IS A GREAT 8692 05:44:33,211 --> 05:44:34,980 OPPORTUNITY TO PUSH FORWARD 8693 05:44:34,980 --> 05:44:36,514 ADDRESSING SOME OF THE BARRIERS 8694 05:44:36,514 --> 05:44:38,817 TO HEALTH AND WELLNESS IN PEOPLE 8695 05:44:38,817 --> 05:44:40,552 WITH DISABILITIES. 8696 05:44:40,552 --> 05:44:41,219 NEXT SLIDE PLEASE. 8697 05:44:41,219 --> 05:44:49,194 ALSO I THINK SO MANY OF YOU ARE 8698 05:44:49,194 --> 05:44:50,962 AWARE OF THE WORKSHOP IN APRIL 8699 05:44:50,962 --> 05:44:53,465 TO RAISE AWARENESS OF ABLEISM IN 8700 05:44:53,465 --> 05:44:54,866 CLINICAL CARE AND RESEARCH 8701 05:44:54,866 --> 05:44:55,166 ENTERPRISE. 8702 05:44:55,166 --> 05:44:58,036 AND TO REALLY LOOK AT HOW WE CAN 8703 05:44:58,036 --> 05:44:59,904 MITIGATE THIS, MANY ARE ALREADY 8704 05:44:59,904 --> 05:45:02,007 VERY AWARE, I'M SURE THERE'S 8705 05:45:02,007 --> 05:45:03,408 BEEN DISCUSSION. 8706 05:45:03,408 --> 05:45:05,176 BUT I THINK, YOU KNOW, BOTTOM 8707 05:45:05,176 --> 05:45:07,679 LINE WE HAVE TO DO A BETTER JOB 8708 05:45:07,679 --> 05:45:09,848 OF ADDRESSING ABLEISM IN 8709 05:45:09,848 --> 05:45:11,750 RESEARCH AND HAVE TO INCLUDE 8710 05:45:11,750 --> 05:45:12,717 PEOPLE WITH DISABILITIES IN 8711 05:45:12,717 --> 05:45:14,919 TERMS OF THE INCLUSION AND 8712 05:45:14,919 --> 05:45:16,955 FUNDED STUDIES, ALSO IN THE 8713 05:45:16,955 --> 05:45:18,056 RESEARCH TEAM, WHICH I'M SUPER 8714 05:45:18,056 --> 05:45:20,792 GLAD TO HEAR THE DISCUSSION 8715 05:45:20,792 --> 05:45:24,229 EARLIER, THINKING ABOUT ABLEISM 8716 05:45:24,229 --> 05:45:26,264 AS POTENTIAL CAUSE OF HEALTH 8717 05:45:26,264 --> 05:45:27,365 DISPARITIES REFLECTED IN 8718 05:45:27,365 --> 05:45:29,667 RESEARCH WE FUND AND INCREDIBLY 8719 05:45:29,667 --> 05:45:31,302 IMPORTANT TO RECOGNIZE DIGNITY 8720 05:45:31,302 --> 05:45:33,038 AND VALUE OF DISABLED PEOPLE IS 8721 05:45:33,038 --> 05:45:36,107 CRITICAL TO THIS AND WE HAVE TO 8722 05:45:36,107 --> 05:45:37,909 THINK ABOUT ABLEISM AS A CAUSE 8723 05:45:37,909 --> 05:45:39,244 OF SOME DISPARITIES WE'RE 8724 05:45:39,244 --> 05:45:43,715 SEEING. 8725 05:45:43,715 --> 05:45:46,918 NEXT SLIDE PLEASE. 8726 05:45:46,918 --> 05:45:49,421 WE WERE ABLE RELEASE FUNDING 8727 05:45:49,421 --> 05:45:50,388 STUDENT SPECIFIC REQUEST FOR 8728 05:45:50,388 --> 05:45:51,823 APPLICATIONS HOW TO UNDERSTAND 8729 05:45:51,823 --> 05:45:53,124 AND MITIGATE HEALTH DISPARITIES 8730 05:45:53,124 --> 05:45:55,126 EXPERIENCED BY PEOPLE WITH 8731 05:45:55,126 --> 05:45:55,760 DISABILITIES INCLUDING 8732 05:45:55,760 --> 05:45:57,862 OBSERVATIONAL STUDIES AND SYSTEM 8733 05:45:57,862 --> 05:45:59,164 LEVEL INTERVENTIONS. 8734 05:45:59,164 --> 05:46:00,265 AND THOUGH THE APPLICATION 8735 05:46:00,265 --> 05:46:02,834 DEADLINE PASSED IN NOVEMBER OF 8736 05:46:02,834 --> 05:46:09,774 THIS YEAR, I WANT TO THANK 8737 05:46:09,774 --> 05:46:11,076 CO-SPONSORS, IT'S A GREAT WAY 8738 05:46:11,076 --> 05:46:15,914 FOR US TO PARTNER TO REALLY TRY 8739 05:46:15,914 --> 05:46:17,549 TO ADDRESS HOW THIS IMPACTS 8740 05:46:17,549 --> 05:46:22,153 HEALTH FOR PEOPLE WITH 8741 05:46:22,153 --> 05:46:22,821 DISABILITIES. 8742 05:46:22,821 --> 05:46:23,588 NEXT SLIDE PLEASE. 8743 05:46:23,588 --> 05:46:25,557 TURNING A BIT TO THE 8744 05:46:25,557 --> 05:46:26,991 ACCESSIBILITY RECOMMENDATIONS TO 8745 05:46:26,991 --> 05:46:31,696 THE NIH, WE LOOKED AT WHAT THE 8746 05:46:31,696 --> 05:46:34,299 RECOMMENDATIONS WERE. 8747 05:46:34,299 --> 05:46:35,967 SO, WE HAVE TRACKED A LOT OF 8748 05:46:35,967 --> 05:46:37,502 THINGS THAT WERE MENTIONED. 8749 05:46:37,502 --> 05:46:39,571 WE'RE THINKING ABOUT WHO IS 8750 05:46:39,571 --> 05:46:40,438 ACCOUNTABLE FOR THOSE. 8751 05:46:40,438 --> 05:46:41,773 THIS WENT TO THE STEERING 8752 05:46:41,773 --> 05:46:44,843 COMMITTEE OF THE NIH AND WAS 8753 05:46:44,843 --> 05:46:45,410 ASSIGNED TO THE DIVERSITY, 8754 05:46:45,410 --> 05:46:47,011 EQUITY, INCLUSION, AND 8755 05:46:47,011 --> 05:46:48,646 ACCESSIBILITY WORK GROUP. 8756 05:46:48,646 --> 05:46:51,282 AND SO WE'RE LOOKING AT THE 8757 05:46:51,282 --> 05:46:55,120 CULTURE OF THE NIH, AND ABLEISM 8758 05:46:55,120 --> 05:46:56,955 AS A SPECIFIC CONTRIBUTOR. 8759 05:46:56,955 --> 05:46:58,490 AND THEN RESEARCH POLICIES AND 8760 05:46:58,490 --> 05:47:00,258 SYSTEMS THAT WE CAN IMPACT TO 8761 05:47:00,258 --> 05:47:03,428 MAKE A DIFFERENCE. 8762 05:47:03,428 --> 05:47:06,631 NEXT SLIDE PLEASE. 8763 05:47:06,631 --> 05:47:08,133 SO, I HAVE THE OPPORTUNITY TO 8764 05:47:08,133 --> 05:47:10,335 WORK WITH TWO REALLY AMAZING 8765 05:47:10,335 --> 05:47:11,870 PEOPLE ON THIS WORK. 8766 05:47:11,870 --> 05:47:15,140 AND SO THE DISABILITY SUBGROUP 8767 05:47:15,140 --> 05:47:17,242 IS CO-LED BY MYSELF, KEVIN 8768 05:47:17,242 --> 05:47:21,279 WILLIAMS WHO COMES AS AN EQUAL 8769 05:47:21,279 --> 05:47:23,481 EMPLOYMENT OPPORTUNITY ATTORNEY, 8770 05:47:23,481 --> 05:47:24,282 DIRECTOR OF OFFICE OF EQUITY, 8771 05:47:24,282 --> 05:47:25,049 DIVERSITY, AND INCLUSION, SO 8772 05:47:25,049 --> 05:47:27,752 HE'S REALLY GOING TO BE SORT OF 8773 05:47:27,752 --> 05:47:30,922 ON THE SIDE OF LOOKING AT OUR 8774 05:47:30,922 --> 05:47:32,090 REASONABLE ACCOMMODATIONS, 8775 05:47:32,090 --> 05:47:33,525 PROGRAMS AND POLICIES, AS WELL 8776 05:47:33,525 --> 05:47:34,859 AS EMPLOYEE PROGRAMS AND 8777 05:47:34,859 --> 05:47:40,231 POLICIES HAVING TO DO WITH 8778 05:47:40,231 --> 05:47:40,798 DISCRIMINATION, HARASSMENT, 8779 05:47:40,798 --> 05:47:41,065 CIVILITY. 8780 05:47:41,065 --> 05:47:43,835 AND SO HE WILL BE WORKING A LOT 8781 05:47:43,835 --> 05:47:49,741 IN THOSE AREAS. 8782 05:47:49,741 --> 05:47:51,609 ELLEN ROLFES COMES TO US WITH A 8783 05:47:51,609 --> 05:47:53,311 BACKGROUND FROM THE OFFICE OF 8784 05:47:53,311 --> 05:47:56,114 HUMAN RESOURCES, OFFICE OF THE 8785 05:47:56,114 --> 05:48:04,622 DIRECTOR, NOW EXECUTIVE OFFICER, 8786 05:48:04,622 --> 05:48:05,023 REALLY UNDERSTANDS 8787 05:48:05,023 --> 05:48:05,623 ADMINISTRATIVE PROGRAMS, AND 8788 05:48:05,623 --> 05:48:07,358 THEY WILL LET ME COME ALONG FOR 8789 05:48:07,358 --> 05:48:08,560 THE RIDE. 8790 05:48:08,560 --> 05:48:11,529 I COME WITH I THINK A FAIRLY 8791 05:48:11,529 --> 05:48:13,398 SUBSTANTIVE HISTORY WORKING WITH 8792 05:48:13,398 --> 05:48:14,499 THE DISABILITY COMMUNITY 8793 05:48:14,499 --> 05:48:15,266 ESPECIALLY IN SCIENTIFIC AREAS. 8794 05:48:15,266 --> 05:48:16,901 NEXT SLIDE PLEASE. 8795 05:48:16,901 --> 05:48:19,304 SO HERE IS OUR ROLE, TO LEAD 8796 05:48:19,304 --> 05:48:21,706 ACTIONS TO IDENTIFY FOCUS AREAS 8797 05:48:21,706 --> 05:48:23,741 AND IMPLEMENT RECOMMENDATIONS, 8798 05:48:23,741 --> 05:48:25,743 TO PROVIDE CONSULTATION AND 8799 05:48:25,743 --> 05:48:26,644 DELIVERABLES TO LEADERSHIP AND 8800 05:48:26,644 --> 05:48:27,612 LEAD GROUPS WITH THEM. 8801 05:48:27,612 --> 05:48:30,348 SO IF WE'RE NOT THE LEAD BUT IT 8802 05:48:30,348 --> 05:48:32,116 INCLUDES ACCESSIBILITY WE WILL 8803 05:48:32,116 --> 05:48:33,218 BE CONSULTANTS FOR THOSE FOLKS. 8804 05:48:33,218 --> 05:48:36,821 I'LL GIVE YOU SOME EXAMPLES. 8805 05:48:36,821 --> 05:48:39,123 ENGAGE WITH INTERNAL AND 8806 05:48:39,123 --> 05:48:40,225 EXTERNAL COMMUNITY, FACILITATE 8807 05:48:40,225 --> 05:48:40,858 RELATIONSHIP BUILDING, SOMETHING 8808 05:48:40,858 --> 05:48:43,161 WE HAVE TO START WITH, RIGHT? 8809 05:48:43,161 --> 05:48:45,063 AS WE ALL KNOW, IT'S BEEN 8810 05:48:45,063 --> 05:48:48,967 APPROPRIATED BY A LOT OF FOLKS. 8811 05:48:48,967 --> 05:48:49,734 DISABILITY RIGHTS ORGANIZATIONS 8812 05:48:49,734 --> 05:48:50,735 REALLY COINED THE TERM NOTHING 8813 05:48:50,735 --> 05:48:53,004 ABOUT US WITHOUT US. 8814 05:48:53,004 --> 05:48:55,106 I'VE HEARD IT USED IN SO MANY 8815 05:48:55,106 --> 05:48:56,608 CONTEXTS, WHERE WERE YOU PEOPLE 8816 05:48:56,608 --> 05:49:01,212 IN THE 19 70'S AND '80s AND 8817 05:49:01,212 --> 05:49:02,046 '90s BUT WHATEVER. 8818 05:49:02,046 --> 05:49:04,282 I THINK AT ITS BASE IF WE DON'T 8819 05:49:04,282 --> 05:49:06,217 START THERE WE'RE GOING TO NOT 8820 05:49:06,217 --> 05:49:08,653 SUCCEED ON ANY OF THE THINGS 8821 05:49:08,653 --> 05:49:10,421 THAT WE ARE LAYING OUT HERE. 8822 05:49:10,421 --> 05:49:11,956 JUST KNOW THAT'S GOING TO 8823 05:49:11,956 --> 05:49:12,824 HAPPEN. 8824 05:49:12,824 --> 05:49:16,094 AND THIS IS ACTUALLY THE START. 8825 05:49:16,094 --> 05:49:21,699 NEXT SLIDE PLEASE. 8826 05:49:21,699 --> 05:49:22,567 INTERNALLY WE HAVE EMPLOYEE 8827 05:49:22,567 --> 05:49:28,573 INTEREST GROUPS AND GROUPS OF 8828 05:49:28,573 --> 05:49:29,574 TRAINEES INTERNALLY, REACHING 8829 05:49:29,574 --> 05:49:31,943 OUTSIDE, LOOKING AT POLICIES AND 8830 05:49:31,943 --> 05:49:35,346 PROCEDURES FOR ABLEIST LANGUAGE, 8831 05:49:35,346 --> 05:49:37,315 COMPORTING GUIDES, LOOKING AT 8832 05:49:37,315 --> 05:49:38,182 WORKFORCE TRAINING, INCREASE 8833 05:49:38,182 --> 05:49:39,517 PEOPLE'S KNOWLEDGE OF THE 8834 05:49:39,517 --> 05:49:41,853 DISABILITY COMMUNITY AND HOW TO 8835 05:49:41,853 --> 05:49:46,090 BEST DEMYSTIFY THAT IN THE 8836 05:49:46,090 --> 05:49:46,858 MIDDLE OF DEMYSTIFYING 8837 05:49:46,858 --> 05:49:49,794 DISABILITY, EASY THINGS TO HELP 8838 05:49:49,794 --> 05:49:51,996 PEOPLE ALONG WITH THIS. 8839 05:49:51,996 --> 05:49:54,966 COMPLIANCE WITH EXISTING LAWS, 8840 05:49:54,966 --> 05:49:56,834 CONSULT WITH NIH OFFICES LEADING 8841 05:49:56,834 --> 05:49:58,236 EFFORTS AND BUILD RESOURCES FOR 8842 05:49:58,236 --> 05:49:59,871 THE INSTITUTES AND CENTERS TO 8843 05:49:59,871 --> 05:50:01,839 PROMOTE INCLUSIVE PRACTICES IN 8844 05:50:01,839 --> 05:50:03,708 THEIR RESEARCH AND HIRE AND 8845 05:50:03,708 --> 05:50:07,679 RETAIN STAFF TO SUPPORT THE 8846 05:50:07,679 --> 05:50:07,945 RESEARCH. 8847 05:50:07,945 --> 05:50:08,780 NEXT SLIDE. 8848 05:50:08,780 --> 05:50:10,748 THE OTHER THING WE NEED TO THINK 8849 05:50:10,748 --> 05:50:13,351 ABOUT IS HOW DO WE INCREASE 8850 05:50:13,351 --> 05:50:21,025 OPTIONS FOR DISABLED PEOPLE IN 8851 05:50:21,025 --> 05:50:21,693 BIOMEDICAL AND BIOBEHAVIORAL 8852 05:50:21,693 --> 05:50:24,228 SCIENCE, HOW WE DO FUNDING AND 8853 05:50:24,228 --> 05:50:25,296 HOW THAT IMPEDES. 8854 05:50:25,296 --> 05:50:27,932 THERE'S NOIR ARTICLE IN "NATURE" 8855 05:50:27,932 --> 05:50:29,801 LAST WEEK ABOUT SPECIFIC 8856 05:50:29,801 --> 05:50:31,536 DISCIPLINES, WHAT ARE THE 8857 05:50:31,536 --> 05:50:32,136 ENVIRONMENTAL AND STRUCTURAL 8858 05:50:32,136 --> 05:50:34,172 BARRIERS PEOPLE FACE AS THEY 8859 05:50:34,172 --> 05:50:36,374 MOVE INTO VARIOUS ROLES SO THERE 8860 05:50:36,374 --> 05:50:39,210 WAS EXAMPLE IN THE CHEMISTRY 8861 05:50:39,210 --> 05:50:39,544 FIELD. 8862 05:50:39,544 --> 05:50:41,512 AND I PARTICIPATED IN ANOTHER 8863 05:50:41,512 --> 05:50:44,015 WORKSHOP HOSTED BY THE NATIONAL 8864 05:50:44,015 --> 05:50:45,650 ACADEMIES, WHERE WE HEARD FIRST 8865 05:50:45,650 --> 05:50:47,085 HAND FROM RESEARCHERS ACROSS 8866 05:50:47,085 --> 05:50:48,419 DISCIPLINES SORT OF WHAT GOT IN 8867 05:50:48,419 --> 05:50:50,822 THEIR WAY AS THEY TRIED TO MOVE 8868 05:50:50,822 --> 05:50:52,457 THROUGH THE FIELD. 8869 05:50:52,457 --> 05:50:54,092 HOW DO WE FUND ACCOMMODATIONS 8870 05:50:54,092 --> 05:50:56,060 AND/OR SUPPORTS FOR PEOPLE AS 8871 05:50:56,060 --> 05:50:57,729 THEY WRITE GRANTS AND SEEK 8872 05:50:57,729 --> 05:50:59,163 SUPPORTS FOR THEIR SCIENCE, ALSO 8873 05:50:59,163 --> 05:51:00,798 WHAT CAN WE DO IN THE INTRAMURAL 8874 05:51:00,798 --> 05:51:02,900 PROGRAM AND GROUP DOES INCLUDE A 8875 05:51:02,900 --> 05:51:04,502 NUMBER OF REPRESENTATIVES THAT 8876 05:51:04,502 --> 05:51:06,704 ARE VERY WELL ENGAGED IN OUR 8877 05:51:06,704 --> 05:51:07,739 INTRAMURAL SCIENCE PROGRAMS AS 8878 05:51:07,739 --> 05:51:10,508 WELL, FROM THE OFFICE OF 8879 05:51:10,508 --> 05:51:12,477 INTRAMURAL RESEARCH, OFFICE OF 8880 05:51:12,477 --> 05:51:13,911 INTRAMURAL TRAINING EDUCATION 8881 05:51:13,911 --> 05:51:15,012 AND CLINICAL CENTER. 8882 05:51:15,012 --> 05:51:17,749 HOW DO WE DO BETTER IN 8883 05:51:17,749 --> 05:51:19,150 RECRUITING, RETRAINING ADVANCING 8884 05:51:19,150 --> 05:51:20,151 CAREERS IN SCIENTISTS WITH 8885 05:51:20,151 --> 05:51:21,152 DISABILITY HERE AND WHAT 8886 05:51:21,152 --> 05:51:22,420 BARRIERS DO WE HAVE INTERNALLY 8887 05:51:22,420 --> 05:51:24,522 ON THIS. 8888 05:51:24,522 --> 05:51:25,390 NEXT SLIDE PLEASE. 8889 05:51:25,390 --> 05:51:26,924 THE OTHER THING WE HAVE TO DO 8890 05:51:26,924 --> 05:51:29,460 BECAUSE WE KNOW PART OF THIS IS 8891 05:51:29,460 --> 05:51:30,661 STRUCTURAL AND ENVIRONMENTAL, 8892 05:51:30,661 --> 05:51:31,062 RIGHT? 8893 05:51:31,062 --> 05:51:33,731 HOW DO WE ENABLE UNIVERSAL 8894 05:51:33,731 --> 05:51:35,166 DESIGN AND ACCESSIBILITY? 8895 05:51:35,166 --> 05:51:37,235 WE HAVE TO LOOK AT OUR 8896 05:51:37,235 --> 05:51:38,770 FACILITIES, WHEN WE DO 8897 05:51:38,770 --> 05:51:39,871 RENOVATIONS ARE WE MEETING THE 8898 05:51:39,871 --> 05:51:42,173 LETTER OF THE LAW WHEN IT COMES 8899 05:51:42,173 --> 05:51:42,940 TO ACCESS? 8900 05:51:42,940 --> 05:51:44,675 ARE WE MEETING THE SPIRIT OF THE 8901 05:51:44,675 --> 05:51:45,243 LAW, RIGHT? 8902 05:51:45,243 --> 05:51:48,613 SO IF YOU CAN ONLY HAVE IN A 8903 05:51:48,613 --> 05:51:53,985 CONFERENCE ROOM EIGHT PEOPLE 8904 05:51:53,985 --> 05:51:57,588 WITH WHEELCHAIRS, IF I CAN ONLY 8905 05:51:57,588 --> 05:51:59,223 GET THE FIRE MARSHAL TO ALLOW 8906 05:51:59,223 --> 05:52:01,092 THAT, THAT'S NOT WHERE WE NEED 8907 05:52:01,092 --> 05:52:02,193 TO BE, HAVING EXPERIENCED THAT 8908 05:52:02,193 --> 05:52:04,929 AND TALKING TO THE FIRE MARSHAL 8909 05:52:04,929 --> 05:52:05,229 MYSELF. 8910 05:52:05,229 --> 05:52:06,998 WE'RE GOING TO HAVE SOME 8911 05:52:06,998 --> 05:52:07,331 DISCUSSIONS. 8912 05:52:07,331 --> 05:52:09,300 WE HAVE TO THINK ABOUT BARRIERS. 8913 05:52:09,300 --> 05:52:11,702 I WILL TELL YOU OUR OFFICE OF 8914 05:52:11,702 --> 05:52:13,004 RESEARCH FACILITIES LEAD IS 8915 05:52:13,004 --> 05:52:14,639 INCREDIBLE WITH THIS. 8916 05:52:14,639 --> 05:52:18,042 SO ONE OF OUR FIRST ACTS WE SAW 8917 05:52:18,042 --> 05:52:22,079 A SIGN THAT INCLUDED ABLEIST 8918 05:52:22,079 --> 05:52:23,848 LANGUAGE, THEY ARE CHANGING ALL 8919 05:52:23,848 --> 05:52:27,251 THE SIGNS BY THE END OF THE 8920 05:52:27,251 --> 05:52:27,618 YEAR. 8921 05:52:27,618 --> 05:52:29,320 IT'S A LITTLE THING BUT IF I CAN 8922 05:52:29,320 --> 05:52:31,189 E-MAIL THE OFFICE OF RESEARCH 8923 05:52:31,189 --> 05:52:33,024 FACILITIES AND SAY, HEY, THIS IS 8924 05:52:33,024 --> 05:52:34,992 NOT COOL, WE GET IT CHANGED, 8925 05:52:34,992 --> 05:52:37,295 THAT'S A SMALL STEP BUT IT'S 8926 05:52:37,295 --> 05:52:39,397 SMALL STEPS THAT LEAD TO BIGGER 8927 05:52:39,397 --> 05:52:41,232 STEPS FROM MY PERSPECTIVE. 8928 05:52:41,232 --> 05:52:42,900 WE NEED TO ENSURE MATERIALS THAT 8929 05:52:42,900 --> 05:52:46,103 WE DISTRIBUTE TO PEOPLE ARE 8930 05:52:46,103 --> 05:52:49,874 COMPLIANT WITH SECTION 508 AND 8931 05:52:49,874 --> 05:52:50,775 OTHERS, CONSUMABLE, PLAN 8932 05:52:50,775 --> 05:52:53,511 LANGUAGE, SYSTEMS MAY NOT BE 8933 05:52:53,511 --> 05:52:55,112 COMPLIANT SO WE'RE WORKING WITH 8934 05:52:55,112 --> 05:52:56,581 CENTER FOR INFORMATION 8935 05:52:56,581 --> 05:52:57,748 TECHNOLOGY TO MAKE SURE A LOT OF 8936 05:52:57,748 --> 05:53:02,553 SYSTEMS THAT MAY NOT CURRENTLY 8937 05:53:02,553 --> 05:53:04,856 BE 508 COMPLIANT GET COMPLIANT. 8938 05:53:04,856 --> 05:53:07,291 NICHD THIS YEAR FOR EXAMPLE 8939 05:53:07,291 --> 05:53:09,794 FUNDED AND MADE COMPLIANT OUR 8940 05:53:09,794 --> 05:53:10,495 STRATEGIC REPORTING SYSTEMS 8941 05:53:10,495 --> 05:53:12,530 BECAUSE THEY WERE NOT COMPLIANT 8942 05:53:12,530 --> 05:53:14,165 WITH 508. 8943 05:53:14,165 --> 05:53:16,234 SO WE WILL ADVOCATE AT THAT 8944 05:53:16,234 --> 05:53:16,467 LEVEL. 8945 05:53:16,467 --> 05:53:19,637 WE ALSO NEED TO THINK ABOUT LOW 8946 05:53:19,637 --> 05:53:20,938 BARRIER OPPORTUNITIES TO 8947 05:53:20,938 --> 05:53:21,939 PARTICIPATE IN MEETING, REVIEW 8948 05:53:21,939 --> 05:53:23,341 AND ADVISORY COUNCILS AND MAKE 8949 05:53:23,341 --> 05:53:24,876 SURE OUR STAFF MEETINGS AND 8950 05:53:24,876 --> 05:53:26,644 GATHERINGS ARE ACCESSIBLE IN ANY 8951 05:53:26,644 --> 05:53:30,448 FORMAT THAT WE OFFER THEM. 8952 05:53:30,448 --> 05:53:31,782 NEXT SLIDE PLEASE. 8953 05:53:31,782 --> 05:53:33,851 SO WE ARE THINKING ABOUT HOW DO 8954 05:53:33,851 --> 05:53:36,587 WE DO THIS EFFICIENTLY AND 8955 05:53:36,587 --> 05:53:40,324 CONTRIBUTE TO THE LEADS TO THE 8956 05:53:40,324 --> 05:53:41,526 STRATEGIC PLAN, INTEGRATE THINGS 8957 05:53:41,526 --> 05:53:43,494 TO MOVE FASTER AND IDENTIFY GAPS 8958 05:53:43,494 --> 05:53:45,263 IN CURRENT EFFORTS IN AREAS FOR 8959 05:53:45,263 --> 05:53:47,431 METRIC DEVELOPMENT TO BE 8960 05:53:47,431 --> 05:53:47,865 ACCOUNTABLE. 8961 05:53:47,865 --> 05:53:49,867 NEXT SLIDE PLEASE. 8962 05:53:49,867 --> 05:53:51,602 WE'RE GOING TO BE FORMING THE 8963 05:53:51,602 --> 05:53:54,205 SUBGROUP WHICH WE'VE GOT ALL THE 8964 05:53:54,205 --> 05:53:56,407 INVITATIONS OUT AND HAD 8965 05:53:56,407 --> 05:53:58,142 EVERYBODY SIGNED UP WITHIN 24 8966 05:53:58,142 --> 05:53:58,476 HOURS. 8967 05:53:58,476 --> 05:54:01,312 SO WE HAVE A SMALL WORKING GROUP 8968 05:54:01,312 --> 05:54:02,647 THAT WE'RE PARTNERING WITH TO 8969 05:54:02,647 --> 05:54:08,252 MAKE THIS HAPPEN LOOKING AT DATA 8970 05:54:08,252 --> 05:54:10,087 SOURCES AND PARTNERS, SPECIFYING 8971 05:54:10,087 --> 05:54:10,888 TIMELINES AND DELIVERABLES. 8972 05:54:10,888 --> 05:54:12,623 I'M NOT GOOD ABOUT RUNNING 8973 05:54:12,623 --> 05:54:14,926 MEETINGS JUST FOR THE SAKE OF 8974 05:54:14,926 --> 05:54:15,793 RUNNING MEETINGS. 8975 05:54:15,793 --> 05:54:16,627 IT'S NOT MY BIG. 8976 05:54:16,627 --> 05:54:18,396 YEAH, THERE'S GOING TO BE 8977 05:54:18,396 --> 05:54:18,763 MOVEMENT HERE. 8978 05:54:18,763 --> 05:54:20,731 IF WE RUN INTO BARRIERS WE'LL 8979 05:54:20,731 --> 05:54:23,234 FIND WAYS TO WHEEL OVER THEM. 8980 05:54:23,234 --> 05:54:24,135 NEXT SLIDE PLEASE. 8981 05:54:24,135 --> 05:54:26,170 SO LET ME GIVE EXAMPLES OF SOME 8982 05:54:26,170 --> 05:54:28,539 THINGS WE'RE GOING TO DO. 8983 05:54:28,539 --> 05:54:31,242 KEVIN WILL BE THINKING ABOUT OUR 8984 05:54:31,242 --> 05:54:32,143 REASONABLE ACCOMMODATION 8985 05:54:32,143 --> 05:54:32,677 PROCESS, HE STARTED 8986 05:54:32,677 --> 05:54:33,978 CONVERSATIONS ABOUT HOW WE DO 8987 05:54:33,978 --> 05:54:37,181 THAT BEFORE SOMEBODY COMES ON 8988 05:54:37,181 --> 05:54:39,116 BOARD AND SORT OF EASY WINS, 8989 05:54:39,116 --> 05:54:40,551 WHAT CAN WE APPROVE WITHOUT A 8990 05:54:40,551 --> 05:54:42,286 SUPERVISOR HAVING TO THINK ABOUT 8991 05:54:42,286 --> 05:54:45,256 IT, JUST WHEN YOU COME ON BOARD 8992 05:54:45,256 --> 05:54:46,891 IF YOU NEED THIS JUST TELL US. 8993 05:54:46,891 --> 05:54:49,226 YOU DON'T HAVE TO GO THROUGH 8994 05:54:49,226 --> 05:54:51,295 MEDICAL STUFF, JUST TELL US YOU 8995 05:54:51,295 --> 05:54:52,163 NEED DRAGON, THAT'S FINE. 8996 05:54:52,163 --> 05:54:54,365 WHAT DATA DO WE HAVE TO MAKE 8997 05:54:54,365 --> 05:54:55,666 INTERNAL DECISIONS AND WHAT ARE 8998 05:54:55,666 --> 05:54:57,435 WE DOING TO ENGAGE PEOPLE WHEN 8999 05:54:57,435 --> 05:55:03,240 THEY COME IN SO THAT IF THERE'S 9000 05:55:03,240 --> 05:55:05,543 A COMMUNITY, NEURODIVERSITY 9001 05:55:05,543 --> 05:55:08,145 COMMUNITY, COMMUNITY OF BLIND 9002 05:55:08,145 --> 05:55:09,113 NIH EMPLOYEES, HOW DO WE CONNECT 9003 05:55:09,113 --> 05:55:10,448 YOU FROM THE BEGINNING SO YOU 9004 05:55:10,448 --> 05:55:13,417 DON'T HAVE TO FIND THOSE FOLKS 9005 05:55:13,417 --> 05:55:13,684 YOURSELF. 9006 05:55:13,684 --> 05:55:15,586 AND WHAT SHOULD WE DO IN TERMS 9007 05:55:15,586 --> 05:55:16,487 OF EMPLOYMENT BEST PRACTICES, 9008 05:55:16,487 --> 05:55:19,523 WE'RE GOING TO LOOK AT OUR 9009 05:55:19,523 --> 05:55:20,625 PREVENTION OF DISABILITY 9010 05:55:20,625 --> 05:55:21,192 DISCRIMINATION POLICY AND 9011 05:55:21,192 --> 05:55:23,160 EDUCATION AND HOW DO WE 9012 05:55:23,160 --> 05:55:26,130 INTEGRATE THAT WITH OTHER OF OUR 9013 05:55:26,130 --> 05:55:29,000 HARASSMENT AND DISCRIMINATION 9014 05:55:29,000 --> 05:55:30,101 EDUCATION PROGRAMS. 9015 05:55:30,101 --> 05:55:32,069 ELLEN WILL LOOK AT THIS 9016 05:55:32,069 --> 05:55:35,573 DAY-TO-DAY NUTS AND BOLTS STUFF, 9017 05:55:35,573 --> 05:55:40,144 BETTER INCLUDE DISABILITY, 508 9018 05:55:40,144 --> 05:55:40,444 COMPLIANCE. 9019 05:55:40,444 --> 05:55:41,779 IF YOU'RE GOING TO BUILD A 9020 05:55:41,779 --> 05:55:44,982 SYSTEM HOW DO WE VERIFY IT'S 508 9021 05:55:44,982 --> 05:55:46,050 COMPLIANT AND STAY COMPLIANT. 9022 05:55:46,050 --> 05:55:48,586 HOW DO WE LOOK AT FACILITIES AND 9023 05:55:48,586 --> 05:55:50,755 RESOURCES FOR ACCESSIBILITY SO 9024 05:55:50,755 --> 05:55:53,157 WE'VE BEEN TALKING TO ORF ABOUT 9025 05:55:53,157 --> 05:55:54,792 HOW DOES A PERSON WITH 9026 05:55:54,792 --> 05:55:58,429 DISABILITY AS THEY ENTER WITH 9027 05:55:58,429 --> 05:56:00,831 THE NIH, MAKE ACCOMMODATIONS AND 9028 05:56:00,831 --> 05:56:02,133 RENOVATIONS OF LAB FACILITIES, 9029 05:56:02,133 --> 05:56:04,535 WHAT ACTIONS DO WE HAVE FOR LIKE 9030 05:56:04,535 --> 05:56:05,703 HOODS OR EQUIPMENT. 9031 05:56:05,703 --> 05:56:07,605 SO LOOKING AT SOME OF THOSE 9032 05:56:07,605 --> 05:56:09,373 THINGS TO MAKE THE ENVIRONMENT 9033 05:56:09,373 --> 05:56:10,041 MORE ACCESSIBLE. 9034 05:56:10,041 --> 05:56:12,276 HOW DO WE DO BETTER IN 9035 05:56:12,276 --> 05:56:16,347 RECRUITMENT AND HIRING TO THE 9036 05:56:16,347 --> 05:56:18,115 DISABILITY COMMUNITY, WHAT ARE 9037 05:56:18,115 --> 05:56:20,451 WE DOING AND WHAT CAN WE DO 9038 05:56:20,451 --> 05:56:20,685 BETTER. 9039 05:56:20,685 --> 05:56:21,719 THERE'S A BENEFIT. 9040 05:56:21,719 --> 05:56:23,587 YOU CAN DIRECT HIRE A PERSON 9041 05:56:23,587 --> 05:56:24,689 WITH A DISABILITY MUCH EASIER 9042 05:56:24,689 --> 05:56:27,858 THAN YOU CAN DO THROUGH A GLOBAL 9043 05:56:27,858 --> 05:56:28,225 SEARCH. 9044 05:56:28,225 --> 05:56:31,028 AND SO I SEE THAT AS A BENEFIT 9045 05:56:31,028 --> 05:56:32,430 AND HARD HIRING ENVIRONMENT. 9046 05:56:32,430 --> 05:56:35,066 WE'RE ALSO LOOKING AT NIH 9047 05:56:35,066 --> 05:56:36,367 POLICIES FOR ABLEIST LANGUAGE. 9048 05:56:36,367 --> 05:56:38,035 I'M GOING TO LOOK AT SOME 9049 05:56:38,035 --> 05:56:40,337 RESOURCES THAT WE HAVE FOR 9050 05:56:40,337 --> 05:56:41,205 DISABILITY INCLUSION AND 9051 05:56:41,205 --> 05:56:42,406 RESEARCH PROGRAMS. 9052 05:56:42,406 --> 05:56:44,909 THERE'S WORK GOING ON, WE WANT 9053 05:56:44,909 --> 05:56:46,444 TO EXPAND AND INCLUDE LIVED 9054 05:56:46,444 --> 05:56:46,744 EXPERIENCE. 9055 05:56:46,744 --> 05:56:48,946 LOOKING AT OUR POLICY LANGUAGE 9056 05:56:48,946 --> 05:56:51,816 FOR SCIENCE, ENSURING THAT THAT 9057 05:56:51,816 --> 05:56:54,385 IS NOT ABLEIST IN ITS APPROACH. 9058 05:56:54,385 --> 05:56:55,886 LOOKING AT ACCESSIBILITY SOME 9059 05:56:55,886 --> 05:56:57,521 SYSTEMS FOR GRANTS AND REVIEW, 9060 05:56:57,521 --> 05:56:59,490 THINKING ABOUT HOW WE BETTER 9061 05:56:59,490 --> 05:57:01,792 STRENGTHEN OUR WORKFORCE OF 9062 05:57:01,792 --> 05:57:02,760 SCIENTISTS WITH DISABILITIES, 9063 05:57:02,760 --> 05:57:03,227 PREVENTING DISABILITY 9064 05:57:03,227 --> 05:57:03,794 DISCRIMINATION AT THE 9065 05:57:03,794 --> 05:57:04,428 ORGANIZATION LEVEL. 9066 05:57:04,428 --> 05:57:06,397 DEAL WITH HAVE SOME LEVERS WE 9067 05:57:06,397 --> 05:57:08,332 CAN PULL IN THAT AREA. 9068 05:57:08,332 --> 05:57:10,434 SO FOR SCIENTISTS WE KNOW WE'RE 9069 05:57:10,434 --> 05:57:11,635 FACING DISCRIMINATION OR 9070 05:57:11,635 --> 05:57:12,169 HARASSMENT AT THEIR 9071 05:57:12,169 --> 05:57:13,604 ORGANIZATIONS WHO HAVE AN NIH 9072 05:57:13,604 --> 05:57:13,804 AWARD. 9073 05:57:13,804 --> 05:57:15,806 WE CAN LOOK AT FUNDING POLICY 9074 05:57:15,806 --> 05:57:19,510 AND FIND WAYS TO HELP THEM. 9075 05:57:19,510 --> 05:57:21,278 NEXT SLIDE PLEASE. 9076 05:57:21,278 --> 05:57:24,882 SO, I REALIZE YOU ARE AT THE 9077 05:57:24,882 --> 05:57:26,183 END OF ON LONG DAY. 9078 05:57:26,183 --> 05:57:28,686 IF HAVE YOU NO QUESTIONS BECAUSE 9079 05:57:28,686 --> 05:57:29,987 YOUR BRAINS ARE FRIED THAT'S 9080 05:57:29,987 --> 05:57:31,889 FINE BUT I WANT TO OPEN UP FOR 9081 05:57:31,889 --> 05:57:32,423 QUESTIONS. 9082 05:57:32,423 --> 05:57:34,792 I THINK I LEFT 15 MINUTES AND 9083 05:57:34,792 --> 05:57:36,794 THANK YOU ALL SO MUCH FOR ALL 9084 05:57:36,794 --> 05:57:38,095 THE SUPPORT THAT WE MAY BE 9085 05:57:38,095 --> 05:57:40,531 ASKING YOU FOR AS WE MOVE 9086 05:57:40,531 --> 05:57:43,033 FORWARD WITH THIS WORK. 9087 05:57:43,033 --> 05:57:44,235 AND ALSO WE'LL PROBABLY BE 9088 05:57:44,235 --> 05:57:46,537 ASKING SOME OF YOU FOR 9089 05:57:46,537 --> 05:57:47,271 ENGAGEMENT OPPORTUNITIES WE MAY 9090 05:57:47,271 --> 05:57:49,740 NEED FOR SOME OF THIS TO ENSURE 9091 05:57:49,740 --> 05:57:51,709 THAT WE GET THE ENGAGEMENT TO 9092 05:57:51,709 --> 05:57:52,676 LAUNCH THIS CORRECTLY. 9093 05:57:52,676 --> 05:57:56,514 SO WITH THAT I WILL END. 9094 05:57:56,514 --> 05:58:01,452 >> THANK YOU SO VERY MUCH FOR 9095 05:58:01,452 --> 05:58:05,055 THAT ARE, INDEED. 9096 05:58:05,055 --> 05:58:09,660 LIFE WITH POSSIBILITIES, AND 9097 05:58:09,660 --> 05:58:09,994 PROJECTS. 9098 05:58:09,994 --> 05:58:11,629 LEWIS HAS A QUESTION. 9099 05:58:11,629 --> 05:58:11,896 GO AHEAD. 9100 05:58:11,896 --> 05:58:15,466 >> THANK YOU SO MUCH. 9101 05:58:15,466 --> 05:58:21,405 REALLY INTERESTING PRESENTATION. 9102 05:58:21,405 --> 05:58:24,241 AWESOME PRESENTATIONS ACROSS THE 9103 05:58:24,241 --> 05:58:24,441 BOARD. 9104 05:58:24,441 --> 05:58:28,279 I WAS EXCITED TO SEE ABOUT THE 9105 05:58:28,279 --> 05:58:29,613 DISCUSSION OF WORKFORCE 9106 05:58:29,613 --> 05:58:31,215 DEVELOPMENT FOR DISABILITY 9107 05:58:31,215 --> 05:58:31,615 COMMUNITY. 9108 05:58:31,615 --> 05:58:33,651 I'M REALLY AMPED ABOUT THAT FOR 9109 05:58:33,651 --> 05:58:34,952 A LOT OF REASONS. 9110 05:58:34,952 --> 05:58:39,757 GOING BACK TO MY DAYS ON STATE 9111 05:58:39,757 --> 05:58:40,624 REHAB COUNCIL IN GEORGIA, THIS 9112 05:58:40,624 --> 05:58:43,360 WAS ONE OF THE THINGS THAT CAME 9113 05:58:43,360 --> 05:58:47,565 UP A GOOD BIT OF TIME, REALLY 9114 05:58:47,565 --> 05:58:51,168 BECAUSE FOLKS FROM THE 9115 05:58:51,168 --> 05:58:52,269 DISABILITY COMMUNITY WERE 9116 05:58:52,269 --> 05:58:54,371 CONCERNED ABOUT -- I TALKED A 9117 05:58:54,371 --> 05:58:56,340 LITTLE BIT ABOUT THIS TODAY, 9118 05:58:56,340 --> 05:58:57,641 CONCERNED ABOUT PEOPLE NOT BEING 9119 05:58:57,641 --> 05:59:00,477 USED TO SEEING PEOPLE WITH 9120 05:59:00,477 --> 05:59:01,779 VARIOUS DISABILITIES IN THE 9121 05:59:01,779 --> 05:59:03,447 SCIENTIFIC COMMUNITY AS A WHOLE. 9122 05:59:03,447 --> 05:59:09,253 THEY ARE NOT IN LABS, NOT AT 9123 05:59:09,253 --> 05:59:10,654 UNIVERSITIES IN CLIA WAYS 9124 05:59:10,654 --> 05:59:12,623 CONNECTED TO THE RESEARCH 9125 05:59:12,623 --> 05:59:13,390 INFRASTRUCTURE. 9126 05:59:13,390 --> 05:59:15,359 I WAS CURIOUS, NUMBER ONE, TO 9127 05:59:15,359 --> 05:59:19,563 KNOW IF PART OF THE WORK MOVING 9128 05:59:19,563 --> 05:59:26,203 FORWARD FOR YOUR STRATEGIC 9129 05:59:26,203 --> 05:59:30,241 PLANNING GROUP THERE LEVERAGES 9130 05:59:30,241 --> 05:59:32,076 VOC REHAB BUT ALSO THIS IS 9131 05:59:32,076 --> 05:59:36,614 CONVERSATION COMES UP A LOT HERE 9132 05:59:36,614 --> 05:59:40,851 IN GEORGIA, HOW CAN WE ENCOURAGE 9133 05:59:40,851 --> 05:59:42,419 MORE DISABILITY, MORE DISABLED 9134 05:59:42,419 --> 05:59:46,757 PERSONS TO BE PART OF OUR STEM 9135 05:59:46,757 --> 05:59:47,992 EDUCATION HERE? 9136 05:59:47,992 --> 05:59:54,665 THIS IS A CHALLENGE HONESTLY TO 9137 05:59:54,665 --> 05:59:56,767 CONVINCE INDIVIDUALS THAT PEOPLE 9138 05:59:56,767 --> 05:59:57,501 FROM DISABLED BACKGROUNDS 9139 05:59:57,501 --> 06:00:01,038 DESERVE A SPOT AT THE TABLE 9140 06:00:01,038 --> 06:00:02,673 WITHIN OUR BACHELOR'S DEGREE 9141 06:00:02,673 --> 06:00:04,975 PROGRAMS, WITHIN OUR MASTER'S 9142 06:00:04,975 --> 06:00:07,811 PROGRAMS, AND HOW CAN WE REALLY 9143 06:00:07,811 --> 06:00:09,880 LEVERAGE THOSE TWO THINGS TO 9144 06:00:09,880 --> 06:00:11,949 PROMOTE THAT MORE AT AN 9145 06:00:11,949 --> 06:00:13,517 EDUCATIONAL LEVEL AS WELL AS 9146 06:00:13,517 --> 06:00:15,486 RESEARCH LEVEL. 9147 06:00:15,486 --> 06:00:17,755 >> SUCH A GREAT QUESTION, LEWIS. 9148 06:00:17,755 --> 06:00:23,661 GREAT TO SEE YOU, FIRST OFF. 9149 06:00:23,661 --> 06:00:26,797 AND SO I THINK PART OF THIS IS 9150 06:00:26,797 --> 06:00:27,831 EDUCATION, RIGHT? 9151 06:00:27,831 --> 06:00:30,768 I THINK IT STARTS AND ENDS WITH 9152 06:00:30,768 --> 06:00:32,970 YOU HAVE TO UNDERSTAND THAT 9153 06:00:32,970 --> 06:00:34,071 SIMPLY BECAUSE SOMEBODY PRESENTS 9154 06:00:34,071 --> 06:00:37,007 IN A CERTAIN WAY AND THESE ARE 9155 06:00:37,007 --> 06:00:37,875 ASSUMPTIONS PEOPLE MAKE, THE 9156 06:00:37,875 --> 06:00:40,945 THING WE HAVE TO EDUCATE AND 9157 06:00:40,945 --> 06:00:47,184 OVERCOME, HOW DO WE START WITH 9158 06:00:47,184 --> 06:00:50,688 THIS IS A SCIENTIST, AND NOT 9159 06:00:50,688 --> 06:00:52,022 THIS IS A PERSON WITH A 9160 06:00:52,022 --> 06:00:53,857 DISABILITY WHO HAPPENS TO BE A 9161 06:00:53,857 --> 06:00:54,358 SCIENTIST. 9162 06:00:54,358 --> 06:00:56,593 I WOULD RATHER START WITH THIS 9163 06:00:56,593 --> 06:00:57,461 IS A SCIENTIST, RIGHT? 9164 06:00:57,461 --> 06:01:01,398 THIS IS A PERSON WHO IS 9165 06:01:01,398 --> 06:01:02,666 INTERESTED IN THE SCIENCES. 9166 06:01:02,666 --> 06:01:05,469 THAT IS GOING TO TAKE A CULTURE 9167 06:01:05,469 --> 06:01:07,438 CHANGE, WHICH IS NOT A QUICK 9168 06:01:07,438 --> 06:01:08,072 THING TO DO. 9169 06:01:08,072 --> 06:01:10,207 SO SOME OF THE THINGS I HAVE 9170 06:01:10,207 --> 06:01:11,842 LISTED ARE QUICK WINS. 9171 06:01:11,842 --> 06:01:12,042 WHY? 9172 06:01:12,042 --> 06:01:13,577 BECAUSE TO GET THE ENERGY OF THE 9173 06:01:13,577 --> 06:01:15,112 COMMUNITY BEHIND THIS YOU HAVE 9174 06:01:15,112 --> 06:01:17,381 TO DEMONSTRATE SOME PROGRESS. 9175 06:01:17,381 --> 06:01:19,683 IT'S WHAT WE DID ALONG, LONG 9176 06:01:19,683 --> 06:01:21,585 TIME AGO IN A GALAXY FAR AWAY 9177 06:01:21,585 --> 06:01:22,753 WHEN I STARTED HERE. 9178 06:01:22,753 --> 06:01:24,188 BUT THE OTHER THING IS I THINK 9179 06:01:24,188 --> 06:01:26,290 TO GET THAT LEVEL OF ENGAGEMENT 9180 06:01:26,290 --> 06:01:28,125 WE'LL NEED A LOT OF GROUPS RUN 9181 06:01:28,125 --> 06:01:31,829 IN THE SAME DIRECTION, AND THAT 9182 06:01:31,829 --> 06:01:33,263 INCLUDES THE AUCD, ASSOCIATION 9183 06:01:33,263 --> 06:01:34,698 OF UNIVERSITIES AND COLLEGES 9184 06:01:34,698 --> 06:01:37,634 WITH DISABILITY, TO GET IN NOT 9185 06:01:37,634 --> 06:01:40,504 JUST ON RESEARCH FOR IDD BUT 9186 06:01:40,504 --> 06:01:41,472 ALSO RESEARCH INCLUDING PEOPLE 9187 06:01:41,472 --> 06:01:43,307 TO DO THIS RESEARCH WITH 9188 06:01:43,307 --> 06:01:44,008 DISABILITY, RIGHT? 9189 06:01:44,008 --> 06:01:45,843 WE HAVE TO THINK ABOUT THE 9190 06:01:45,843 --> 06:01:48,245 AMERICAN ASSOCIATION FOR PEOPLE 9191 06:01:48,245 --> 06:01:49,346 WITH DISABILITIES, AMERICAN 9192 06:01:49,346 --> 06:01:50,447 ASSOCIATION FOR HEALTH AND 9193 06:01:50,447 --> 06:01:51,648 DISABILITY, ALL OF THESE 9194 06:01:51,648 --> 06:01:54,251 ORGANIZATIONS WE'LL HAVE TO 9195 06:01:54,251 --> 06:01:56,120 REACH OUT TO, TO SAY I'M NOT 9196 06:01:56,120 --> 06:01:57,654 MAKING THIS UP BY MYSELF RIGHT 9197 06:01:57,654 --> 06:01:57,888 NOW. 9198 06:01:57,888 --> 06:01:58,956 THAT'S A GOOD IDEA. 9199 06:01:58,956 --> 06:02:00,024 THERE'S LOTS OF PEOPLE WHO 9200 06:02:00,024 --> 06:02:01,592 THOUGHT ABOUT THIS FOR A VERY 9201 06:02:01,592 --> 06:02:02,459 LONG TIME. 9202 06:02:02,459 --> 06:02:06,864 BUT AS THE NIH WE CAN CONVENE, 9203 06:02:06,864 --> 06:02:09,466 PUSH, AND WE CAN POTENTIALLY 9204 06:02:09,466 --> 06:02:09,933 FUND, RIGHT? 9205 06:02:09,933 --> 06:02:12,870 AND SO HOW DO WE MAKE THAT 9206 06:02:12,870 --> 06:02:13,437 HAPPEN? 9207 06:02:13,437 --> 06:02:15,205 HOW DO WE EDUCATE PEOPLE? 9208 06:02:15,205 --> 06:02:16,273 I'M NOT DOING THAT OUT OF THE 9209 06:02:16,273 --> 06:02:17,608 BOX WITHOUT TALKING TO PEOPLE 9210 06:02:17,608 --> 06:02:20,644 THINKING ABOUT IT FOR A REALLY 9211 06:02:20,644 --> 06:02:21,745 LONG TIME. 9212 06:02:21,745 --> 06:02:23,047 AND WHAT'S WORKED AND WHAT 9213 06:02:23,047 --> 06:02:24,481 HASN'T, IF IT HASN'T WORKED WHY 9214 06:02:24,481 --> 06:02:26,116 HASN'T IT WORKED AND CAN WE 9215 06:02:26,116 --> 06:02:27,918 CHANGE THE WAY WE APPROACH IT 9216 06:02:27,918 --> 06:02:32,589 AND MAYBE TRY IT AGAIN, RIGHT? 9217 06:02:32,589 --> 06:02:34,425 I NEVER THINK THAT, YOU KNOW, I 9218 06:02:34,425 --> 06:02:36,193 CAN'T REMEMBER MY CAR KEYS, 9219 06:02:36,193 --> 06:02:36,627 RIGHT? 9220 06:02:36,627 --> 06:02:40,564 I HAVE TO TRY DIFFERENT 9221 06:02:40,564 --> 06:02:40,898 APPROACHES. 9222 06:02:40,898 --> 06:02:42,199 ONCE I FIND A WAY TO WORK THAT'S 9223 06:02:42,199 --> 06:02:43,567 THE WAY I DO IT. 9224 06:02:43,567 --> 06:02:45,035 I CAN TRY A BUNCH OF THINGS 9225 06:02:45,035 --> 06:02:46,770 FIRST SO IF I LEARN FROM WHAT 9226 06:02:46,770 --> 06:02:48,439 DIDN'T WORK MAYBE I CAN FIGURE 9227 06:02:48,439 --> 06:02:49,840 OUT WHAT COULD WORK IN THE 9228 06:02:49,840 --> 06:02:50,207 FUTURE. 9229 06:02:50,207 --> 06:02:53,010 SO, I THINK IT'S A GREAT 9230 06:02:53,010 --> 06:02:53,444 QUESTION. 9231 06:02:53,444 --> 06:02:54,445 I'VE ALREADY HAD SOME 9232 06:02:54,445 --> 06:02:55,179 CONVERSATIONS. 9233 06:02:55,179 --> 06:02:56,313 IF THERE ARE ORGANIZATIONS OR 9234 06:02:56,313 --> 06:02:59,049 PARTNERS YOU THINK I NEED TO 9235 06:02:59,049 --> 06:03:00,451 CONNECT WITH, THAT'S THE INPUT 9236 06:03:00,451 --> 06:03:03,554 WE NEED GOING FORWARD SO NEVER 9237 06:03:03,554 --> 06:03:05,389 HESITATE TO E-MAIL ME. 9238 06:03:05,389 --> 06:03:08,559 ACTUALLY I READ MY E-MAIL AND 9239 06:03:08,559 --> 06:03:10,327 KEEP IT UNDER TWENTY SO I DO 9240 06:03:10,327 --> 06:03:12,096 RESPOND AND HAVE A RESOURCE 9241 06:03:12,096 --> 06:03:13,464 DOCUMENT I'M WORKING EVERY DAY 9242 06:03:13,464 --> 06:03:15,999 ON THIS TO START THIS UP RIGHT 9243 06:03:15,999 --> 06:03:18,402 SO WHEN WE ENGAGE, WE ENGAGE 9244 06:03:18,402 --> 06:03:18,735 QUICKLY. 9245 06:03:18,735 --> 06:03:19,770 WE ALSO HAVE SCIENTISTS INTERNAL 9246 06:03:19,770 --> 06:03:21,772 HERE WHO THOUGHT ABOUT THIS AS 9247 06:03:21,772 --> 06:03:24,108 WELL SO KNOW THE COMMITTEE 9248 06:03:24,108 --> 06:03:25,742 INCLUDES PEOPLE WITH LIVED 9249 06:03:25,742 --> 06:03:26,844 EXPERIENCE, WE'RE GOING TO 9250 06:03:26,844 --> 06:03:37,254 ENGAGE OUR GROUPS IN THIS AREA. 9251 06:03:37,254 --> 06:03:39,723 >> MICHELLE? 9252 06:03:39,723 --> 06:03:45,762 9253 06:03:45,762 --> 06:03:47,865 9254 06:03:47,865 --> 06:03:49,366 >> THANK YOU. 9255 06:03:49,366 --> 06:03:52,903 WE HAVE A LOT OF SCIENTISTS THAT 9256 06:03:52,903 --> 06:03:55,639 ARE LIVING WITH DISABILITIES AND 9257 06:03:55,639 --> 06:04:01,778 I TOTALLY LOOK UP TO LIKE DR. 9258 06:04:01,778 --> 06:04:04,915 COOPER AND DR. ESKONAZI. 9259 06:04:04,915 --> 06:04:06,917 I WONDER IS THERE ANY NOT TO 9260 06:04:06,917 --> 06:04:09,853 TALK TO THEM ABOUT THEIR 9261 06:04:09,853 --> 06:04:12,055 PROCESSES, YOU KNOW, I THINK I 9262 06:04:12,055 --> 06:04:13,557 PERSONALLY THINK ABOUT THIS 9263 06:04:13,557 --> 06:04:17,961 ISSUE, THE SAME WAY WHEN WE 9264 06:04:17,961 --> 06:04:19,129 THINK ABOUT MINORITIZED 9265 06:04:19,129 --> 06:04:20,797 POPULATIONS IN THAT SOMETIMES I 9266 06:04:20,797 --> 06:04:24,168 WALK IN THE ROOM AND I'M SEEN AS 9267 06:04:24,168 --> 06:04:26,703 A BLACK PERSON FIRST, SCIENTIST 9268 06:04:26,703 --> 06:04:27,337 NEXT. 9269 06:04:27,337 --> 06:04:29,339 SO THESE ARE CULTURAL ISSUES 9270 06:04:29,339 --> 06:04:32,843 THAT WE HAVE IN AMERICA, AND NOW 9271 06:04:32,843 --> 06:04:34,478 WE'RE KIND OF LIKE PUTTING A 9272 06:04:34,478 --> 06:04:35,746 LENS AND THINKING ABOUT THIS 9273 06:04:35,746 --> 06:04:38,315 FROM THE PERSPECTIVE OF A PERSON 9274 06:04:38,315 --> 06:04:41,485 WITH DISABILITY, AND I THINK 9275 06:04:41,485 --> 06:04:43,153 SOME THINGS WE'VE LEARNED FROM 9276 06:04:43,153 --> 06:04:47,491 DEALING WITH PEOPLE OF COLOR AND 9277 06:04:47,491 --> 06:04:48,025 MINORITIZED COMMUNITIES OR 9278 06:04:48,025 --> 06:04:50,494 PEOPLE THAT ARE POOR AND HAVING 9279 06:04:50,494 --> 06:04:51,995 TROUBLE SEEING THEM SUCCEEDING, 9280 06:04:51,995 --> 06:04:53,764 WE CAN APPLY THIS TO, YOU KNOW, 9281 06:04:53,764 --> 06:04:54,865 THE COMMUNITY THAT WE REALLY 9282 06:04:54,865 --> 06:04:58,802 WANT TO HELP RIGHT NOW AND I'M 9283 06:04:58,802 --> 06:05:01,104 ALSO REALIZING SOMETIMES IT 9284 06:05:01,104 --> 06:05:05,375 HELPS TO SEE SOMEONE THAT LOOKS 9285 06:05:05,375 --> 06:05:07,344 LIKE YOU OR HAS ISSUES LIKE YOU 9286 06:05:07,344 --> 06:05:09,846 DO BE AT THE FOREFRONT OF 9287 06:05:09,846 --> 06:05:10,113 PROMOTING. 9288 06:05:10,113 --> 06:05:11,815 HEY, SEE, I CAN DO IT. 9289 06:05:11,815 --> 06:05:12,683 THEREFORE, YOU CAN. 9290 06:05:12,683 --> 06:05:14,218 YOU DON'T KNOW HOW MANY YOUNG 9291 06:05:14,218 --> 06:05:16,753 PEOPLE COME UP TO ME AND GO, 9292 06:05:16,753 --> 06:05:19,056 WHOA, THE FACT THAT YOU'RE HERE 9293 06:05:19,056 --> 06:05:20,724 MEANS THAT NOW I HAVE AN IDEA 9294 06:05:20,724 --> 06:05:22,893 THAT I CAN BE THERE TOO. 9295 06:05:22,893 --> 06:05:25,062 I'M JUST PUTTING THAT IN THAT, 9296 06:05:25,062 --> 06:05:28,398 MAYBE THERE NEEDS TO BE A PUBLIC 9297 06:05:28,398 --> 06:05:30,234 PUSHING THESE SCIENTISTS TO THE 9298 06:05:30,234 --> 06:05:32,202 FOREFRONT SO PEOPLE SEE, HEY, HE 9299 06:05:32,202 --> 06:05:35,038 DID IT, I CAN DO IT, YOU KNOW? 9300 06:05:35,038 --> 06:05:37,774 >> I THINK IT'S A GREAT POINT. 9301 06:05:37,774 --> 06:05:39,543 REPRESENTATION DOES MATTER. 9302 06:05:39,543 --> 06:05:42,512 WE'VE SEEN THAT IN RESEARCH. 9303 06:05:42,512 --> 06:05:45,349 AND TO THE EXTENT THAT WE THINK 9304 06:05:45,349 --> 06:05:48,785 ABOUT HOW TO ELEVATE THAT, WE 9305 06:05:48,785 --> 06:05:49,987 TALKED ABOUT THIS AND I'M TRYING 9306 06:05:49,987 --> 06:05:50,854 TO REMEMBER. 9307 06:05:50,854 --> 06:05:56,059 I WANTED TO LOOK IT UP BUT I 9308 06:05:56,059 --> 06:05:56,960 DIDN'T HAVE TIME. 9309 06:05:56,960 --> 06:06:01,999 THERE WAS A SESSION ON THIS 9310 06:06:01,999 --> 06:06:03,867 2016, 2017, IF I REMEMBER 9311 06:06:03,867 --> 06:06:07,137 CORRECTLY, WHERE WE TALKED ABOUT 9312 06:06:07,137 --> 06:06:09,072 THIS AS WELL. 9313 06:06:09,072 --> 06:06:12,509 AND I THINK, YOU KNOW, IF IT'S A 9314 06:06:12,509 --> 06:06:13,877 CONVENING, A CAMPAIGN, WE CAN 9315 06:06:13,877 --> 06:06:15,445 THINK ABOUT HOW TO DO THAT. 9316 06:06:15,445 --> 06:06:17,748 THERE ARE WAYS TO DO IT. 9317 06:06:17,748 --> 06:06:19,182 BUT I ALSO WANT TO DO IT WITH 9318 06:06:19,182 --> 06:06:21,451 RESPECT TO THE PEOPLE WHO 9319 06:06:21,451 --> 06:06:26,490 PARTICIPATE THAT WE RESPECT 9320 06:06:26,490 --> 06:06:30,761 THEIR SCIENTIST FIRST, YOU KNOW, 9321 06:06:30,761 --> 06:06:32,095 PHYSICIAN FIRST, PSYCHOLOGIST 9322 06:06:32,095 --> 06:06:33,930 FIRST, RIGHT? 9323 06:06:33,930 --> 06:06:36,600 THERE'S ALSO THE INTERSECTIONAL 9324 06:06:36,600 --> 06:06:39,069 PIECE, WE'VE BEEN TALKING ABOUT 9325 06:06:39,069 --> 06:06:40,070 THIS A LOT. 9326 06:06:40,070 --> 06:06:42,706 I THINK THIS WAS BROUGHT UP IN 9327 06:06:42,706 --> 06:06:48,979 THE NIMHD COUNCIL, PEOPLE WITH 9328 06:06:48,979 --> 06:06:52,916 DISABILITIES ACTUALLY HAVE 9329 06:06:52,916 --> 06:06:53,984 INTERSECTIONAL REPRESENTATION 9330 06:06:53,984 --> 06:06:55,852 RIGHTS, SOME FACING NOT ONLY 9331 06:06:55,852 --> 06:06:56,953 STIGMA AROUND DISABILITY BUT MAY 9332 06:06:56,953 --> 06:07:00,557 BE PART OF A MINORITY GROUP, MAY 9333 06:07:00,557 --> 06:07:04,094 ALSO HAVE A DIFFERENCE IN 9334 06:07:04,094 --> 06:07:04,561 GENDER. 9335 06:07:04,561 --> 06:07:06,163 MAY ALSO BE POOR, FROM A RURAL 9336 06:07:06,163 --> 06:07:06,596 LOCATION. 9337 06:07:06,596 --> 06:07:08,799 ONCE YOU START STACKING THOSE 9338 06:07:08,799 --> 06:07:11,535 ODDS AGAINST SOMEBODY IN THIS 9339 06:07:11,535 --> 06:07:13,937 PARTICULAR FIELD, IT GETS REALLY 9340 06:07:13,937 --> 06:07:14,371 HARD. 9341 06:07:14,371 --> 06:07:16,440 WE'RE NEVER GOING TO SHOW ALL OF 9342 06:07:16,440 --> 06:07:18,642 THAT, BUT I THINK WHAT WE HAVE 9343 06:07:18,642 --> 06:07:23,113 TO CONSIDER IS HOW ARE WE 9344 06:07:23,113 --> 06:07:24,314 INCLUDING AND MAKE THIS 9345 06:07:24,314 --> 06:07:27,684 ACCESSIBLE AND REACHABLE. 9346 06:07:27,684 --> 06:07:28,819 ACCESSIBILITY IS PART OF THAT. 9347 06:07:28,819 --> 06:07:30,354 THAT'S THE REASON I LIKE THAT 9348 06:07:30,354 --> 06:07:32,456 WE'VE PUT IT TOGETHER BECAUSE I 9349 06:07:32,456 --> 06:07:34,191 MAY BE ABLE TO INTEGRATE WITH 9350 06:07:34,191 --> 06:07:35,959 OTHER EFFORTS WHERE WE'RE 9351 06:07:35,959 --> 06:07:41,331 ELEVATING THIS MOVING FORWARD. 9352 06:07:41,331 --> 06:07:41,598 TRISHA? 9353 06:07:41,598 --> 06:07:44,067 OH, SORRY. 9354 06:07:44,067 --> 06:07:47,604 9355 06:07:47,604 --> 06:07:49,439 >> OKAY, YEAH, GOOD. 9356 06:07:49,439 --> 06:07:51,208 NO, THANKS. 9357 06:07:51,208 --> 06:07:52,843 THIS MAY SOUND OLD AND MAYBE 9358 06:07:52,843 --> 06:07:56,346 SILLY TO SOME BUT LOOK AROUND 9359 06:07:56,346 --> 06:07:58,415 THIS ROOM, SITTING AT THIS 9360 06:07:58,415 --> 06:08:01,585 TABLE, WHO ARE IN POSITIONS OF 9361 06:08:01,585 --> 06:08:04,421 WHAT'S CONSIDERED LEADERSHIP WHO 9362 06:08:04,421 --> 06:08:10,460 ARE WOMEN AND THAT WAS PEOPLE, 9363 06:08:10,460 --> 06:08:14,297 THE YOUNGER FOLKS, THAT WAS A 9364 06:08:14,297 --> 06:08:17,467 LONG HAUL THAT TOOK A LOT OF 9365 06:08:17,467 --> 06:08:19,436 CULTURAL CHANGE, MINDSET CHANGE, 9366 06:08:19,436 --> 06:08:24,808 THE IDEA THAT WE HAD THE 9367 06:08:24,808 --> 06:08:25,675 CAPABILITIES OF BRAINS COULD 9368 06:08:25,675 --> 06:08:26,877 HANDLE IT. 9369 06:08:26,877 --> 06:08:28,178 I MEAN, SERIOUSLY. 9370 06:08:28,178 --> 06:08:31,248 AND WE KIND OF FORGET THAT PATH. 9371 06:08:31,248 --> 06:08:34,718 THERE'S BEEN A LOT OF SUCCESSES 9372 06:08:34,718 --> 06:08:34,918 THERE. 9373 06:08:34,918 --> 06:08:38,455 THERE'S STILL A WAY TO GO WHEN 9374 06:08:38,455 --> 06:08:40,323 YOU STEP OUTSIDE OF THE 9375 06:08:40,323 --> 06:08:41,425 GOVERNMENT, THE MILITARY 9376 06:08:41,425 --> 06:08:43,360 SERVICE, YOU LOOK AT 9377 06:08:43,360 --> 06:08:47,431 CORPORATIONS AND WHO IS IN THOSE 9378 06:08:47,431 --> 06:08:50,167 CEO, COO, IT'S VERY LOW 9379 06:08:50,167 --> 06:08:51,802 REPRESENTATION OF WOMEN. 9380 06:08:51,802 --> 06:08:54,204 BUT THE POINT IS WE WALK THE 9381 06:08:54,204 --> 06:08:57,607 MATH, AND WE'VE GOTTEN TO A 9382 06:08:57,607 --> 06:09:02,345 PRETTY, YOU KNOW, FAR ALONG 9383 06:09:02,345 --> 06:09:04,981 HERE, SO IT'S DOABLE. 9384 06:09:04,981 --> 06:09:10,320 BUT LIKE YOU SAID, A LOT OF IT 9385 06:09:10,320 --> 06:09:12,856 IS THE MINDSET AND THE CULTURAL 9386 06:09:12,856 --> 06:09:15,492 CHANGE THAT'S GOT TO BE THERE. 9387 06:09:15,492 --> 06:09:17,360 IT'S JUST GOT TO BE THERE. 9388 06:09:17,360 --> 06:09:20,864 >> YEAH, AND I THINK NIH HAS 9389 06:09:20,864 --> 06:09:22,032 MADE SERIOUS CHANGE THERE. 9390 06:09:22,032 --> 06:09:26,303 WHEN WE START, WHEN I STARTED, 9391 06:09:26,303 --> 06:09:28,939 THERE WERE THREE WOMEN 9392 06:09:28,939 --> 06:09:30,474 DIRECTORS, ONE OF WHOM WAS 9393 06:09:30,474 --> 06:09:30,941 ACTING. 9394 06:09:30,941 --> 06:09:32,876 NOW THE NIH DIRECTOR IS A WOMAN, 9395 06:09:32,876 --> 06:09:34,611 12 I.C. DIRECTORS OF THE 27 WHO 9396 06:09:34,611 --> 06:09:36,847 ARE WOMEN. 9397 06:09:36,847 --> 06:09:38,682 THAT'S A HUGE CHANGE. 9398 06:09:38,682 --> 06:09:41,618 AND SO, YOU KNOW, CAN WE DO IT? 9399 06:09:41,618 --> 06:09:41,852 YEAH. 9400 06:09:41,852 --> 06:09:43,253 DOES IT TAKE INSTITUTIONAL 9401 06:09:43,253 --> 06:09:44,354 COMMITMENT? 9402 06:09:44,354 --> 06:09:44,554 YEAH. 9403 06:09:44,554 --> 06:09:46,089 DOES IT TAKE A LONG VIEW? 9404 06:09:46,089 --> 06:09:46,890 YEAH. 9405 06:09:46,890 --> 06:09:48,091 CAN IT BE DONE? 9406 06:09:48,091 --> 06:09:51,461 I DON'T SEE WHY NOT. 9407 06:09:51,461 --> 06:09:53,864 9408 06:09:53,864 --> 06:09:54,331 >> CHERI? 9409 06:09:54,331 --> 06:09:56,900 >> YEAH, THANK YOU. 9410 06:09:56,900 --> 06:09:58,902 SO, I'LL ADMIT THIS IS MORE OF A 9411 06:09:58,902 --> 06:10:00,103 COMMENT, I DIDN'T WANT TO TAKE 9412 06:10:00,103 --> 06:10:01,838 AIR TIME IF THERE WERE OTHER 9413 06:10:01,838 --> 06:10:02,672 QUESTIONS. 9414 06:10:02,672 --> 06:10:04,908 SINCE WE'RE GETTING INTO 9415 06:10:04,908 --> 06:10:07,677 COMMENTS, I WANTED TO CHIME IN 9416 06:10:07,677 --> 06:10:11,047 AND SAY DEEP GRATITUDE TO YOU, 9417 06:10:11,047 --> 06:10:16,653 ALLISON, FOR YOUR LEADERSHIP AND 9418 06:10:16,653 --> 06:10:20,390 THERESA, RALPH, DR. BIANCHI, 9419 06:10:20,390 --> 06:10:22,559 ANGOLI, THIS SEEMS LIKE WE 9420 06:10:22,559 --> 06:10:23,994 REACHED A TIPPING POINT, A SEA 9421 06:10:23,994 --> 06:10:30,200 CHANGE IN TERMS OF THE NIH'S 9422 06:10:30,200 --> 06:10:31,735 COMMITMENT TO ADDRESSING ABLEISM 9423 06:10:31,735 --> 06:10:33,270 AND ONGOING DISPARITIES TOWARDS 9424 06:10:33,270 --> 06:10:34,204 PEOPLE WITH DISABILITIES IN 9425 06:10:34,204 --> 06:10:36,139 RESEARCH AND I THINK THAT IT'S 9426 06:10:36,139 --> 06:10:40,310 SO ENCOURAGING TO SEE THE 9427 06:10:40,310 --> 06:10:42,279 ALLYSHIP HAPPENING ACROSS THE 9428 06:10:42,279 --> 06:10:43,513 NIH, SEVERAL AGENCIES, IT MAKES 9429 06:10:43,513 --> 06:10:49,519 IT SO MUCH EASY EASIER FOR 9430 06:10:49,519 --> 06:10:50,987 THOSE IN SCIENCE AND MEDICINE 9431 06:10:50,987 --> 06:10:52,155 AND LIVED EXPERIENCE TO JUMP ON 9432 06:10:52,155 --> 06:10:54,691 BOARD BECAUSE WE SEE THE 9433 06:10:54,691 --> 06:10:57,827 MOMENTUM AND ALLYSHIP HAPPENING. 9434 06:10:57,827 --> 06:10:59,496 SIGN ME UP FOR WHATEVER WAY I 9435 06:10:59,496 --> 06:11:00,096 CAN HELP. 9436 06:11:00,096 --> 06:11:01,197 I WANT TO THANK YOU FOR THIS 9437 06:11:01,197 --> 06:11:06,903 ISSUE -- INCREDIBLE EFFORT AND 9438 06:11:06,903 --> 06:11:08,238 PUTTING PASSION AND EXPECTATION 9439 06:11:08,238 --> 06:11:09,105 BEHIND THIS WORK AND WANTED TO 9440 06:11:09,105 --> 06:11:10,640 MAKE SURE THAT WAS ON THE 9441 06:11:10,640 --> 06:11:10,874 RECORD. 9442 06:11:10,874 --> 06:11:13,476 THANK YOU. 9443 06:11:13,476 --> 06:11:15,178 9444 06:11:15,178 --> 06:11:17,814 >> LOOK, YOU GUYS KNOW, I GET 9445 06:11:17,814 --> 06:11:23,219 ALL EMOTIONAL, BUT I THINK THE 9446 06:11:23,219 --> 06:11:24,854 ISSUE IS RIGHT THAT I'M GOING TO 9447 06:11:24,854 --> 06:11:26,590 DO THE BEST I CAN WITH WHAT I 9448 06:11:26,590 --> 06:11:27,357 HAVE, RIGHT? 9449 06:11:27,357 --> 06:11:29,659 I'M NOT A PERSON WITH A 9450 06:11:29,659 --> 06:11:30,293 DISABILITY. 9451 06:11:30,293 --> 06:11:30,927 I'VE HAD FUNCTIONAL IMPAIRMENTS 9452 06:11:30,927 --> 06:11:33,063 OVER THE COURSE OF MY LIFE BUT 9453 06:11:33,063 --> 06:11:34,598 IF YOU LOOK AT ME YOU DON'T 9454 06:11:34,598 --> 06:11:36,900 THINK THAT'S A PERSON WITH A 9455 06:11:36,900 --> 06:11:38,001 DISABILITY. 9456 06:11:38,001 --> 06:11:40,503 FOR PEOPLE WHO HAVE VISIBLE 9457 06:11:40,503 --> 06:11:41,371 DISABILITIES AND INVISIBLE 9458 06:11:41,371 --> 06:11:43,306 DISABILITIES THE BEST WE CAN DO 9459 06:11:43,306 --> 06:11:46,209 IS ENSURE THAT THEY HAVE THE 9460 06:11:46,209 --> 06:11:47,544 SAME RESPECT, VALUE, DIGNITY 9461 06:11:47,544 --> 06:11:49,045 THAT EVERYBODY ELSE DOES. 9462 06:11:49,045 --> 06:11:50,647 SO, YEAH, TRUST ME, WE'LL BE 9463 06:11:50,647 --> 06:11:52,749 REACHING OUT BECAUSE I HAVE THE 9464 06:11:52,749 --> 06:11:55,619 HUMILITY TO KNOW I DON'T KNOW. 9465 06:11:55,619 --> 06:11:56,820 AND ALWAYS HAVE. 9466 06:11:56,820 --> 06:11:58,688 SO MY CO-CHAIRS, I WILL TELL 9467 06:11:58,688 --> 06:12:00,223 YOU, HAVE THE SAME HUMILITY. 9468 06:12:00,223 --> 06:12:02,158 SLOW WE WILL CONTINUE TO 9469 06:12:02,158 --> 06:12:02,959 CHAMPION THIS AS MUCH AND AS 9470 06:12:02,959 --> 06:12:05,028 LONG AS AND HARD AS WE CAN AND I 9471 06:12:05,028 --> 06:12:06,796 HAVE A STRATEGY FOR EVEN IF THEY 9472 06:12:06,796 --> 06:12:08,765 TELL ME MAYBE THIS ISN'T THE BIG 9473 06:12:08,765 --> 06:12:12,268 THING YOU'LL BE DOING, SAY, IN 9474 06:12:12,268 --> 06:12:13,269 NOVEMBER OF 2024, THERE WILL BE 9475 06:12:13,269 --> 06:12:15,438 WAYS IN WHICH I CAN REFRAME THIS 9476 06:12:15,438 --> 06:12:16,973 TO KEEP WORKING ON IT SO DON'T 9477 06:12:16,973 --> 06:12:18,408 GIVE UP ON IT EVEN IF YOU THINK 9478 06:12:18,408 --> 06:12:25,548 IT'S TIME TO GIVE UP ON IT. 9479 06:12:25,548 --> 06:12:35,859 >> THANKS, ALISON. 9480 06:12:40,430 --> 06:12:40,930 >> KATHLEEN AND FRANCISCO. 9481 06:12:40,930 --> 06:12:44,034 >> THIS IS -- I'M NOT SURE THIS 9482 06:12:44,034 --> 06:12:45,201 IS ACTUALLY INCLUDED IN WHAT 9483 06:12:45,201 --> 06:12:46,736 YOU'RE TALKING ABOUT BUT WHAT 9484 06:12:46,736 --> 06:12:49,606 COMES TO MIND WHAT ABOUT THINGS 9485 06:12:49,606 --> 06:12:52,208 THAT ARE TRANSIENT LIKE 9486 06:12:52,208 --> 06:12:53,677 PREGNANCY, INCLUSION OF THAT, 9487 06:12:53,677 --> 06:12:56,279 BECAUSE I FELT EVEN MY OWN 9488 06:12:56,279 --> 06:12:57,480 PREGNANCY IT'S A REALLY VISIBLE 9489 06:12:57,480 --> 06:13:00,083 THING AND PEOPLE COMMENT ON IT 9490 06:13:00,083 --> 06:13:01,384 AND MAKE JUDGMENTS. 9491 06:13:01,384 --> 06:13:04,587 I FEEL LIKE I HAVE SOME, YOU 9492 06:13:04,587 --> 06:13:06,256 KNOW, SEMBLANCE, SIMILAR TO 9493 06:13:06,256 --> 06:13:07,257 DISABILITY ALTHOUGH TRANSIENT. 9494 06:13:07,257 --> 06:13:10,460 SO I THINK DISABILITY AS WE ALL 9495 06:13:10,460 --> 06:13:13,797 KNOW CAN BE, YOU KNOW, A 9496 06:13:13,797 --> 06:13:14,864 TEMPORARY, RIGHT, ALL OF US KNOW 9497 06:13:14,864 --> 06:13:16,733 AT SOME POINT WE'LL HAVE A 9498 06:13:16,733 --> 06:13:17,133 DISABILITY. 9499 06:13:17,133 --> 06:13:19,703 I DO NOT HAVE ARROGANCE TO THINK 9500 06:13:19,703 --> 06:13:24,074 I'LL NEVER HAVE A DISABILITY. 9501 06:13:24,074 --> 06:13:25,475 IT'S VERY FUNNY, EVERY TIME 9502 06:13:25,475 --> 06:13:27,043 SOMEBODY TALKS ABOUT PREGNANCY 9503 06:13:27,043 --> 06:13:28,011 AS SOMETHING THAT'S SO 9504 06:13:28,011 --> 06:13:29,546 RECOGNIZABLE I THINK OF BEING IN 9505 06:13:29,546 --> 06:13:32,649 AN ELEVATOR IN THE BALTIMORE 9506 06:13:32,649 --> 06:13:35,585 V.A. HOSPITAL, WITH SOMEBODY 9507 06:13:35,585 --> 06:13:36,586 TOUCHING MY STOMACH SAYING, YOU 9508 06:13:36,586 --> 06:13:37,821 KNOW, OH, YOU'RE PREGNANT. 9509 06:13:37,821 --> 06:13:38,988 I TOUCH THEIR STOMACH BACK. 9510 06:13:38,988 --> 06:13:40,290 THEY WERE LIKE, WHAT ARE YOU 9511 06:13:40,290 --> 06:13:40,557 DOING? 9512 06:13:40,557 --> 06:13:43,226 I'M LIKE I COULD ASK YOU THE 9513 06:13:43,226 --> 06:13:44,661 SAME QUESTION. 9514 06:13:44,661 --> 06:13:47,063 I DON'T HAVE THE HUMILITY TO 9515 06:13:47,063 --> 06:13:49,065 THINK LIKE PEOPLE DON'T DO SILLY 9516 06:13:49,065 --> 06:13:50,033 THINGS JUST BECAUSE SOMETHING IS 9517 06:13:50,033 --> 06:13:52,769 STARING THEM IN THE FACE, RIGHT? 9518 06:13:52,769 --> 06:13:54,504 I MEAN, I WILL SAY IF YOU'RE 9519 06:13:54,504 --> 06:13:57,240 EVER PREGNANT REALLY DO THAT 9520 06:13:57,240 --> 06:13:58,341 BECAUSE IT'S HILARIOUS. 9521 06:13:58,341 --> 06:13:59,642 BUT WE THINK ABOUT PREGNANCY A 9522 06:13:59,642 --> 06:14:00,643 LOT HERE. 9523 06:14:00,643 --> 06:14:04,247 THE OTHER THING WE THINK ABOUT A 9524 06:14:04,247 --> 06:14:07,951 LOT TOO IS YOU HAVE THE STIGMA 9525 06:14:07,951 --> 06:14:09,619 OF DISABILITY, IF YOU PUT 9526 06:14:09,619 --> 06:14:10,286 REPRODUCTIVE HEALTH ON TOP OF 9527 06:14:10,286 --> 06:14:11,688 THAT GOOD LUCK. 9528 06:14:11,688 --> 06:14:13,323 I HAD TO ANSWER A QUESTION FROM 9529 06:14:13,323 --> 06:14:15,191 A REPORTER, I CAN'T MAKE THIS 9530 06:14:15,191 --> 06:14:15,625 UP. 9531 06:14:15,625 --> 06:14:18,228 WE DID A PRESS EVENT AROUND 9532 06:14:18,228 --> 06:14:21,097 PREGNANCY AND SPINAL CORD 9533 06:14:21,097 --> 06:14:21,464 INJURY. 9534 06:14:21,464 --> 06:14:23,399 A REPORTER SAID HOW DID THEY GET 9535 06:14:23,399 --> 06:14:23,867 PREGNANT? 9536 06:14:23,867 --> 06:14:26,236 I WAS LIKE, OKAY, WE MAY NEED TO 9537 06:14:26,236 --> 06:14:28,104 BACK UP A LITTLE BIT. 9538 06:14:28,104 --> 06:14:30,273 I DON'T KNOW IF ANYBODY'S TALKED 9539 06:14:30,273 --> 06:14:32,575 TO YOU ABOUT HOW PEOPLE GET 9540 06:14:32,575 --> 06:14:32,842 PREGNANT. 9541 06:14:32,842 --> 06:14:34,544 THEY WERE LIKE, WAIT A MINUTE, I 9542 06:14:34,544 --> 06:14:37,280 WAS LIKE, YEAH, THE NORMAL WAY. 9543 06:14:37,280 --> 06:14:38,481 LIKE EVERYBODY ELSE. 9544 06:14:38,481 --> 06:14:40,817 AND IF THEY NEED FERTILITY 9545 06:14:40,817 --> 06:14:42,552 TREATMENT IT'S BECAUSE THEY HAVE 9546 06:14:42,552 --> 06:14:46,456 A PROBLEM WITH INFERTILITY, NOT 9547 06:14:46,456 --> 06:14:47,357 BECAUSE OF THE SPINAL CORD 9548 06:14:47,357 --> 06:14:49,425 INJURY BUT THESE ARE ABLEIST 9549 06:14:49,425 --> 06:14:52,061 ASSUMPTIONS PEOPLE MAKE. 9550 06:14:52,061 --> 06:14:53,463 WHEN WE THINK INTERSECTIONALITY, 9551 06:14:53,463 --> 06:14:56,099 WE KNOW THIS WITH MATERNAL 9552 06:14:56,099 --> 06:14:57,600 HEALTH CRISIS, THERE'S 9553 06:14:57,600 --> 06:14:58,735 SIGNIFICANT MORBIDITY AFTER 9554 06:14:58,735 --> 06:15:03,506 PREGNANCY SO, YES, PEOPLE HAVE 9555 06:15:03,506 --> 06:15:04,274 DISABLING CONDITIONS, WE HAVE TO 9556 06:15:04,274 --> 06:15:05,308 THINK ABOUT THAT. 9557 06:15:05,308 --> 06:15:06,676 THAT'S ON MY MIND. 9558 06:15:06,676 --> 06:15:07,944 WE DO WORK ON PREGNANCY HERE. 9559 06:15:07,944 --> 06:15:09,646 I DON'T KNOW IF YOU KNOW THAT 9560 06:15:09,646 --> 06:15:10,713 BUT WE DO. 9561 06:15:10,713 --> 06:15:12,849 AND WE DO A LOT OF WORK ON 9562 06:15:12,849 --> 06:15:15,018 REPRODUCTIVE HEALTH CARE ACCESS, 9563 06:15:15,018 --> 06:15:17,554 EVEN SOME CONTRACEPTIVE METHODS 9564 06:15:17,554 --> 06:15:22,559 WE HAVE DO NOT WORK WELL FOR 9565 06:15:22,559 --> 06:15:23,693 PEOPLE WITH DISABILITY, SAME AS 9566 06:15:23,693 --> 06:15:24,994 WE LEARNED WITH COVID TESTING. 9567 06:15:24,994 --> 06:15:26,963 WE'LL HAVE TO THINK ABOUT 9568 06:15:26,963 --> 06:15:27,964 ACCESSIBILITY AT ALL LEVELS, 9569 06:15:27,964 --> 06:15:30,033 YOU'RE RIGHT, THERE ARE 9570 06:15:30,033 --> 06:15:30,667 TRANSIENT AND TEMPORARY 9571 06:15:30,667 --> 06:15:32,869 DISABILITIES, WE HAVE TO THINK 9572 06:15:32,869 --> 06:15:35,605 ABOUT INVISIBLE DISABILITIES AND 9573 06:15:35,605 --> 06:15:36,573 CONFRONTING STIGMA THAT PEOPLE 9574 06:15:36,573 --> 06:15:37,674 DON'T HAVE PARTS OF THEIR LIVES 9575 06:15:37,674 --> 06:15:39,442 THAT ARE IN FACT PARTS OF THEIR 9576 06:15:39,442 --> 06:15:40,877 LIVES WE STILL HAVE TO DO 9577 06:15:40,877 --> 06:15:41,744 RESEARCH ON. 9578 06:15:41,744 --> 06:15:42,846 SO IT'S SOMETHING I THINK ABOUT 9579 06:15:42,846 --> 06:15:47,183 A LOT HERE. 9580 06:15:47,183 --> 06:15:47,717 >> FRANCISCO? 9581 06:15:47,717 --> 06:15:53,323 >> DO WE STILL HAVE TIME? 9582 06:15:53,323 --> 06:15:53,756 WE'RE OVER. 9583 06:15:53,756 --> 06:15:57,360 >> I HAVE ALL THE TIME IN THE 9584 06:15:57,360 --> 06:15:58,027 WORLD. 9585 06:15:58,027 --> 06:15:59,562 >> WELL, FIRST OF ALL, THANK YOU 9586 06:15:59,562 --> 06:16:02,966 FOR LEADING THE CHARGE IN THIS. 9587 06:16:02,966 --> 06:16:04,701 AS PART OF THE TRAINING WORKING 9588 06:16:04,701 --> 06:16:07,003 GROUP WE HAVE LONG DISCUSSIONS 9589 06:16:07,003 --> 06:16:08,972 ABOUT HOW TO DIVERSIFY ALONG 9590 06:16:08,972 --> 06:16:11,374 EVERY DIMENSION. 9591 06:16:11,374 --> 06:16:15,211 AND ONE OF THEM WAS THERE SEEMS 9592 06:16:15,211 --> 06:16:18,381 TO BE AN INSTITUTIONAL 9593 06:16:18,381 --> 06:16:20,817 REQUIREMENT THAT FOR YOU TO BE 9594 06:16:20,817 --> 06:16:26,055 ABLE TO PURSUE THESE KINDS OF 9595 06:16:26,055 --> 06:16:27,056 GRANTS, SUPPLEMENTS, YOU HAVE TO 9596 06:16:27,056 --> 06:16:31,861 BE ALREADY SAY EN ENROLLED IN A 9597 06:16:31,861 --> 06:16:34,931 Ph.D. PROGRAM, UNLIKE THE NSF 9598 06:16:34,931 --> 06:16:37,333 WHERE THE FLAGSHIP DIVERSITY 9599 06:16:37,333 --> 06:16:38,868 MECHANISM, HUGELY SUCCESSFUL, IS 9600 06:16:38,868 --> 06:16:41,704 A GRADUATE RESEARCH FELLOWSHIP 9601 06:16:41,704 --> 06:16:44,941 ACTUALLY SOMETHING PEOPLE APPLY 9602 06:16:44,941 --> 06:16:46,309 FOR ON THEIR OWN. 9603 06:16:46,309 --> 06:16:48,845 THEY GET IT ON THEIR OWN BEFORE 9604 06:16:48,845 --> 06:16:50,780 BEING ADMITTED ELSEWHERE AND CAN 9605 06:16:50,780 --> 06:16:52,949 PICK AND CHOOSE WHERE THEY WANT 9606 06:16:52,949 --> 06:16:53,216 TO GO. 9607 06:16:53,216 --> 06:16:56,052 THIS HAS BEEN A TREMENDOUSLY 9608 06:16:56,052 --> 06:16:59,088 EFFECTIVE TOOL FOR DIVERSITY. 9609 06:16:59,088 --> 06:17:01,190 AND SO PERHAPS SINCE WE'RE 9610 06:17:01,190 --> 06:17:02,191 TALKING, HEY, THE SKY'S THE 9611 06:17:02,191 --> 06:17:04,694 LIMIT THERE MIGHT BE A 9612 06:17:04,694 --> 06:17:06,930 POSSIBILITY TO ALLOW DIVERSITY 9613 06:17:06,930 --> 06:17:08,498 THROUGH THOSE MECHANISMS, SO 9614 06:17:08,498 --> 06:17:10,333 THAT PEOPLE ARE NOT APPLYING FOR 9615 06:17:10,333 --> 06:17:12,669 THOSE ONLY WHEN THEY ARE ALREADY 9616 06:17:12,669 --> 06:17:17,707 IN THE SYSTEM WHICH IS ACTUALLY 9617 06:17:17,707 --> 06:17:18,441 REDUCING THE PIPELINE 9618 06:17:18,441 --> 06:17:18,775 TREMENDOUSLY. 9619 06:17:18,775 --> 06:17:20,109 >> I APPRECIATE THAT. 9620 06:17:20,109 --> 06:17:22,312 MY HOPE IS THAT DR. CRUZ BRINGS 9621 06:17:22,312 --> 06:17:23,379 THAT DISCUSSION IN. 9622 06:17:23,379 --> 06:17:25,915 WE'RE LOOKING IN OUR TRAINING 9623 06:17:25,915 --> 06:17:29,285 PROGRAMS AT NICHD RIGHT NOW BUT 9624 06:17:29,285 --> 06:17:31,821 REWEI HAVE OTHER MECHANISMS TO 9625 06:17:31,821 --> 06:17:33,156 BRING PROPOSED CHANGES TO 9626 06:17:33,156 --> 06:17:33,456 PROGRAMS. 9627 06:17:33,456 --> 06:17:35,658 WE DO HAVE BOTH INDEPENDENT AND 9628 06:17:35,658 --> 06:17:37,293 INSTITUTIONAL BUT THEY ARE 9629 06:17:37,293 --> 06:17:38,928 DIFFERENT PHASES OF TRAINING 9630 06:17:38,928 --> 06:17:41,464 THAN THE NSF SO DEFINITELY 9631 06:17:41,464 --> 06:17:43,333 SOMETHING TO -- I'LL LOOK OVER 9632 06:17:43,333 --> 06:17:46,769 TO DR. CRUZ WHO IS -- 9633 06:17:46,769 --> 06:17:48,037 >> I KNOW, FRANCISCO, WE'RE 9634 06:17:48,037 --> 06:17:48,271 TRYING. 9635 06:17:48,271 --> 06:17:49,105 >> CASE IN POINT. 9636 06:17:49,105 --> 06:17:52,508 I DO HAVE PEOPLE WHO HAVE, YOU 9637 06:17:52,508 --> 06:17:54,277 KNOW, CHALLENGES AND WHEELCHAIR 9638 06:17:54,277 --> 06:17:56,813 USERS, THEY CAN NOT APPLY. 9639 06:17:56,813 --> 06:17:59,615 AND FOR THEM TO BE ADMITTED, THE 9640 06:17:59,615 --> 06:18:03,453 PROGRAMS NEED TO ADMIT THEM. 9641 06:18:03,453 --> 06:18:04,554 DOUBLE LAYER. 9642 06:18:04,554 --> 06:18:05,955 WE'VE DISCUSSED IT AS LENGTH. 9643 06:18:05,955 --> 06:18:07,323 I JUST WANTED TO BRING THIS UP 9644 06:18:07,323 --> 06:18:10,226 BECAUSE I THINK IN THE SPIRIT OF 9645 06:18:10,226 --> 06:18:13,396 WHAT DR. CERNICH IS DOING IT'S 9646 06:18:13,396 --> 06:18:15,798 VERY MUCH THE SKY'S THE LIMIT 9647 06:18:15,798 --> 06:18:15,999 HERE. 9648 06:18:15,999 --> 06:18:16,466 >> YEAH. 9649 06:18:16,466 --> 06:18:18,201 IT'S SOMETHING WE CAN BRING UP. 9650 06:18:18,201 --> 06:18:19,969 I ALSO AM VERY GOOD AT JUST 9651 06:18:19,969 --> 06:18:20,737 BRINGING THINGS UP. 9652 06:18:20,737 --> 06:18:23,039 I'M HAPPY TO BE TOLD NO BUT I'M 9653 06:18:23,039 --> 06:18:24,807 ALSO REALLY HAPPY TO BRING IT UP 9654 06:18:24,807 --> 06:18:27,744 KNOWING THAT MAYBE I CAN 9655 06:18:27,744 --> 06:18:28,311 CHALLENGE SOMETHING. 9656 06:18:28,311 --> 06:18:32,448 SO, DR. CRUZ AND I WILL -- FULL 9657 06:18:32,448 --> 06:18:34,117 DISCLOSURE SHE'S ON THE 9658 06:18:34,117 --> 06:18:36,519 COMMITTEE SO YOU HAVE A VOICE ON 9659 06:18:36,519 --> 06:18:38,054 THAT COMMITTEE AND SO SHE I'M 9660 06:18:38,054 --> 06:18:39,455 SURE WILL BRING THAT IN AS WE 9661 06:18:39,455 --> 06:18:41,858 START TALKING ABOUT OUR POLICIES 9662 06:18:41,858 --> 06:18:43,926 AND PROGRAMS. 9663 06:18:43,926 --> 06:18:47,130 >> THANK YOU SO MUCH. 9664 06:18:47,130 --> 06:18:49,665 AND I WANT TO THANK EVERYONE FOR 9665 06:18:49,665 --> 06:18:51,601 BEING ACTIVE AND ENGAGED. 9666 06:18:51,601 --> 06:18:53,469 ALL OF THESE HOURS LATER. 9667 06:18:53,469 --> 06:18:56,773 I HAVE TO SAY, NOBODY HAS 9668 06:18:56,773 --> 06:18:57,507 FLAGGED. 9669 06:18:57,507 --> 06:19:00,043 IT'S JUST BEEN TOTALLY ENGAGED. 9670 06:19:00,043 --> 06:19:01,778 AND TO RALPH AND THERESA. 9671 06:19:01,778 --> 06:19:07,183 THANK YOU FOR ALL YOU'VE DONE. 9672 06:19:07,183 --> 06:19:09,886 AND TO OUR HEROES, AT THE END OF 9673 06:19:09,886 --> 06:19:12,188 THE DAY, FOR MAKING SURE WE WERE 9674 06:19:12,188 --> 06:19:13,389 STILL ABLE TO DO THINGS WE 9675 06:19:13,389 --> 06:19:14,290 WANTED TO DO. 9676 06:19:14,290 --> 06:19:15,491 WE'LL START AGAIN TOMORROW 9677 06:19:15,491 --> 06:19:25,491 MORNING AT 9:00.