1 00:00:07,048 --> 00:00:07,916 WE'RE WELCOMING YOU BACK TO 2 00:00:07,916 --> 00:00:09,717 THE NATIONAL ADVISORY BOARD ON 3 00:00:09,717 --> 00:00:13,321 MEDICAL REHABILITATION RESEARCH. 4 00:00:13,321 --> 00:00:15,056 THIS IS DAY TWO. 5 00:00:15,056 --> 00:00:16,591 DAY ONE WILL BE POSTED ON THE 6 00:00:16,591 --> 00:00:18,460 NIH VIDEOCAST SITE IF YOU WANT 7 00:00:18,460 --> 00:00:20,762 TO CATCH UP ON THAT. 8 00:00:20,762 --> 00:00:24,899 WE'RE COMING TO YOU FROM THE 9 00:00:24,899 --> 00:00:25,934 NATIONAL INSTITUTES OF HEALTH, 10 00:00:25,934 --> 00:00:27,435 AND WE'RE GOING TO START THIS 11 00:00:27,435 --> 00:00:29,604 DAY, WE'RE GOING TO GO FROM 12 00:00:29,604 --> 00:00:31,072 10:00 A.M. UNTIL 2:00 P.M. 13 00:00:31,072 --> 00:00:32,140 EASTERN TIME, AND WE'RE GOING TO 14 00:00:32,140 --> 00:00:35,743 START WITH AN UPDATE ABOUT NIH'S 15 00:00:35,743 --> 00:00:37,278 NEW GRANT REVIEW PROCESS. 16 00:00:37,278 --> 00:00:40,115 AS YOU FOLKS KNOW, A LOT OF OUR 17 00:00:40,115 --> 00:00:41,649 FUNDING IS DRIVEN BY THE PEER 18 00:00:41,649 --> 00:00:43,952 REVIEW PROCESS, AND IN AN EFFORT 19 00:00:43,952 --> 00:00:45,320 TO MAKE IT EVEN MORE TRANSPARENT 20 00:00:45,320 --> 00:00:46,588 AND EVEN MORE EFFECTIVE, THERE'S 21 00:00:46,588 --> 00:00:51,392 BEEN SOME UPDATES TO THAT, AND 22 00:00:51,392 --> 00:00:54,262 WE'RE FORTUNATE TO HAVE VALERIE 23 00:00:54,262 --> 00:00:55,463 DURRANT COME TO US, THE DIRECTOR 24 00:00:55,463 --> 00:00:57,198 OF THE DIVISION OF AIDS 25 00:00:57,198 --> 00:00:58,166 BEHAVIORAL AND POPULATION 26 00:00:58,166 --> 00:00:59,367 SCIENCES AT THE CENTER FOR 27 00:00:59,367 --> 00:01:00,135 SCIENTIFIC REVIEW. 28 00:01:00,135 --> 00:01:02,203 SHE'S A DEMOGRAPHER BY TRAINING, 29 00:01:02,203 --> 00:01:03,404 AND WE'RE PLEASED TO HAVE HER 30 00:01:03,404 --> 00:01:05,507 BACK TO TALK ABOUT THE 31 00:01:05,507 --> 00:01:10,645 SIMPLIFIED REVIEW FRAMEWORK. 32 00:01:10,645 --> 00:01:11,346 VALERIE. 33 00:01:11,346 --> 00:01:12,814 >> ALL RIGHT, GOOD MORNING, 34 00:01:12,814 --> 00:01:13,448 EVERYONE! 35 00:01:13,448 --> 00:01:20,155 HAPPY TO BE HERE THIS MORNING. 36 00:01:20,155 --> 00:01:22,757 THANKS FOR THE INTRODUCTION. 37 00:01:22,757 --> 00:01:24,726 I'LL BE SPEAKING ON SOME OF THE 38 00:01:24,726 --> 00:01:29,130 RECENT CHANGES OR CHANGES BEING 39 00:01:29,130 --> 00:01:31,432 IMPLEMENTED FOR STRENGTHENING 40 00:01:31,432 --> 00:01:32,634 NIH PEER REVIEW THAT WE REFER TO 41 00:01:32,634 --> 00:01:36,037 AS THE SIMPLIFIED REVIEW 42 00:01:36,037 --> 00:01:36,905 FRAMEWORK. 43 00:01:36,905 --> 00:01:38,206 ACRONYM SRF. 44 00:01:38,206 --> 00:01:39,507 HOPEFULLY I WON'T SLIP INTO THAT 45 00:01:39,507 --> 00:01:42,143 TOO MUCH BUT WANTED TO PUT THAT 46 00:01:42,143 --> 00:01:47,282 OUT FRONT. 47 00:01:47,282 --> 00:01:50,351 SO JUST A REALLY BRIEF 48 00:01:50,351 --> 00:01:51,486 INTRODUCTION AND REMINDER ABOUT 49 00:01:51,486 --> 00:01:53,321 THE NIH REVIEW SYSTEM, WHICH 50 00:01:53,321 --> 00:01:54,923 REALLY IS KNOWN AS KIND OF THE 51 00:01:54,923 --> 00:01:58,760 GOLD STANDARD ACROSS THE WORLD. 52 00:01:58,760 --> 00:02:01,162 PART OF THAT IS BASED ON THE 53 00:02:01,162 --> 00:02:01,829 TWO-LEVEL PEER REVIEW THAT WE 54 00:02:01,829 --> 00:02:02,297 DO. 55 00:02:02,297 --> 00:02:06,100 THE FIRST STAGE, WHICH IS THE 56 00:02:06,100 --> 00:02:08,169 REVIEW THAT WE'RE INVOLVED WITH 57 00:02:08,169 --> 00:02:12,340 AT CSR IS THE EVALUATION OF 58 00:02:12,340 --> 00:02:13,308 SCIENTIFIC MERIT, AND THAT IS 59 00:02:13,308 --> 00:02:14,509 KIND OF WHAT MOST PEOPLE THINK 60 00:02:14,509 --> 00:02:16,144 OF WHEN THEY THINK OF PEER 61 00:02:16,144 --> 00:02:17,779 REVIEW, BUT THE SECOND LEVEL IS 62 00:02:17,779 --> 00:02:21,082 THE ADVISORY COUNCILS, WHICH 63 00:02:21,082 --> 00:02:24,552 ALSO INVOLVES MEMBERS OF THE 64 00:02:24,552 --> 00:02:26,120 EXTRAMURAL COMMUNITY, THE 65 00:02:26,120 --> 00:02:28,189 RESEARCH COMMUNITY, THAT THEN 66 00:02:28,189 --> 00:02:30,158 TAKE INTO ACCOUNT THE INPUT FROM 67 00:02:30,158 --> 00:02:31,459 THE FIRST LEVEL OF THE 68 00:02:31,459 --> 00:02:32,760 SCIENTIFIC ASSESSMENT ALONG WITH 69 00:02:32,760 --> 00:02:38,132 OTHER CONSIDERATIONS RELATED TO 70 00:02:38,132 --> 00:02:39,133 BUDGET, PRIORITIES, OTHER 71 00:02:39,133 --> 00:02:42,403 INTERESTS IN MIKI MAKING THOSE 72 00:02:42,403 --> 00:02:42,670 DECISIONS. 73 00:02:42,670 --> 00:02:44,572 THE REASON I MENTION IS BECAUSE 74 00:02:44,572 --> 00:02:46,241 OUR FOCUS ON THE FIRST LEVEL IS 75 00:02:46,241 --> 00:02:47,108 THAT SCIENTIFIC ASSESSMENT IN 76 00:02:47,108 --> 00:02:50,378 ORDER TO KIND OF PROVIDE A CLEAR 77 00:02:50,378 --> 00:02:53,448 AND DIRECT INPUT ON THAT. 78 00:02:53,448 --> 00:02:54,749 SO MORE COMPLEX DECISIONS OR 79 00:02:54,749 --> 00:02:57,719 OTHER FACTORS CAN BE 80 00:02:57,719 --> 00:02:58,786 INCORPORATED IN THE SECOND 81 00:02:58,786 --> 00:03:00,355 STAGE. 82 00:03:00,355 --> 00:03:02,323 WE ARE OUTSIDE OF ALL OF THE 83 00:03:02,323 --> 00:03:04,225 FUNDING ICs, SO NIH AS YOU 84 00:03:04,225 --> 00:03:06,594 KNOW IS A CONGLOMERATE OF A 85 00:03:06,594 --> 00:03:08,529 VARIETY OF DIFFERENT INSTITUTES 86 00:03:08,529 --> 00:03:10,632 AND CENTERS, AND WE WORK AS A 87 00:03:10,632 --> 00:03:11,933 SERVICE CENTER FOR ALL OF NIH 88 00:03:11,933 --> 00:03:15,770 AND ARE NOT WITHIN ANY 89 00:03:15,770 --> 00:03:22,644 PARTICULAR INSTITUTE OR CENTER. 90 00:03:22,644 --> 00:03:23,978 OUR MISSION IS SIMPLE AND 91 00:03:23,978 --> 00:03:26,614 STRAIGHTFORWARD AND PRETTY 92 00:03:26,614 --> 00:03:27,448 SINGULAR. 93 00:03:27,448 --> 00:03:29,117 OUR FULL FOCUS IS ENSURING THAT 94 00:03:29,117 --> 00:03:30,652 NIH GRANT APPLICATIONS RECEIVE A 95 00:03:30,652 --> 00:03:32,387 FAIR, INDEPENDENT, EXPERT, 96 00:03:32,387 --> 00:03:35,123 TIMELY SCIENTIFIC REVIEW, AND TO 97 00:03:35,123 --> 00:03:36,524 PROVIDE AND COMMUNICATE THAT 98 00:03:36,524 --> 00:03:39,627 INFORMATION ALONG TO OUR 99 00:03:39,627 --> 00:03:41,362 INSTITUTE AND CENTER PARTNERS SO 100 00:03:41,362 --> 00:03:43,431 THAT THEY CAN MEET THE BROADER 101 00:03:43,431 --> 00:03:45,066 NIH MISSION OF FUNDING THE MOST 102 00:03:45,066 --> 00:03:51,306 PROMISING RESEARCH. 103 00:03:51,306 --> 00:03:53,508 SO I'D LIKE TO JUST TOUCH ON THE 104 00:03:53,508 --> 00:03:54,709 SCALE OF THIS BECAUSE IT IS A 105 00:03:54,709 --> 00:03:56,778 MASSIVE SCALE THAT WE WORK AT. 106 00:03:56,778 --> 00:03:59,747 CSR REVIEWED IN THE LAST FISCAL 107 00:03:59,747 --> 00:04:02,784 YEAR OVER 66,000 APPLICATIONS, 108 00:04:02,784 --> 00:04:04,652 WHICH IS JUST OVER THREE 109 00:04:04,652 --> 00:04:08,389 QUARTERS OF WHAT NIH RECEIVES. 110 00:04:08,389 --> 00:04:13,394 WE HAVE THE VAST MAJORITY OF THE 111 00:04:13,394 --> 00:04:14,362 R01s, SMALL BUSINESS GRANTS, 112 00:04:14,362 --> 00:04:15,830 AS WELL AS THE FELLOWSHIPS, AND 113 00:04:15,830 --> 00:04:20,301 THEN WE ALSO REVIEW A NUMBER OF 114 00:04:20,301 --> 00:04:24,105 THE PRESS INSTITUTE OFFICE OF 115 00:04:24,105 --> 00:04:25,440 THE DIRECTOR INITIATIVES AND A 116 00:04:25,440 --> 00:04:26,541 RANGE OF OTHER ACTIVITIES AS 117 00:04:26,541 --> 00:04:27,308 WELL. 118 00:04:27,308 --> 00:04:28,976 AND WE OBVIOUSLY DO THIS WITH A 119 00:04:28,976 --> 00:04:31,212 LOT OF HELP. 120 00:04:31,212 --> 00:04:33,314 AND SO AGAIN, JUST LAST YEAR, WE 121 00:04:33,314 --> 00:04:38,553 INVOLVED OVER 19,000 REVIEWERS, 122 00:04:38,553 --> 00:04:40,855 DID OUR WORK WITH 255 SCIENTIFIC 123 00:04:40,855 --> 00:04:43,391 REVIEW OFFICERS, WHO ARE THE 124 00:04:43,391 --> 00:04:46,861 FEDERAL OFFICIALS THAT RUN THOSE 125 00:04:46,861 --> 00:04:48,096 MEETINGS, AND 1200 MEETINGS. 126 00:04:48,096 --> 00:04:50,465 SO IT'S A LARGE SCALE OPERATION, 127 00:04:50,465 --> 00:04:51,566 AND IT'S IMPORTANT TO KEEP THAT 128 00:04:51,566 --> 00:04:53,534 IN MIND WHEN WE TALK ABOUT 129 00:04:53,534 --> 00:04:56,404 EFFORTS THAT WE'RE MAKING TO 130 00:04:56,404 --> 00:04:58,573 IMPROVE THOSE PROCESSES. 131 00:04:58,573 --> 00:05:00,675 SO AS MENTIONED, I'M FOCUSING 132 00:05:00,675 --> 00:05:02,410 TODAY ON THE SIMPLIFIED REVIEW 133 00:05:02,410 --> 00:05:02,744 FRAMEWORK. 134 00:05:02,744 --> 00:05:04,746 THESE ARE THE CHANGES THAT ARE 135 00:05:04,746 --> 00:05:07,982 COMING IN TO BEING. 136 00:05:07,982 --> 00:05:09,183 LET ME TELL YOU A LITTLE BIT, 137 00:05:09,183 --> 00:05:11,719 I'M JUST GOING TO -- I KNOW A 138 00:05:11,719 --> 00:05:15,356 LOT OF INFORMATION IS OUT ABOUT 139 00:05:15,356 --> 00:05:16,791 THE SIMPLIFIED REVIEW FRAMEWORK 140 00:05:16,791 --> 00:05:18,059 THESE DAYS, BUT I JUST WANT TO 141 00:05:18,059 --> 00:05:20,128 KIND OF QUICKLY SKIM OVER THE 142 00:05:20,128 --> 00:05:21,396 BASICS TO MAKE SURE EVERYONE IS 143 00:05:21,396 --> 00:05:23,398 ON THE SAME PAGE. 144 00:05:23,398 --> 00:05:27,568 SO WHAT'S THE MOTIVATION BEHIND 145 00:05:27,568 --> 00:05:29,070 THE UPCOMING CHANGES? 146 00:05:29,070 --> 00:05:29,537 THERE'S REALLY TWO. 147 00:05:29,537 --> 00:05:32,507 SO THE FIRST IS WE WERE GETTING 148 00:05:32,507 --> 00:05:36,978 LOTS OF FEEDBACK FROM STAFF, 149 00:05:36,978 --> 00:05:38,179 FROM RESEARCHERS, FROM THE 150 00:05:38,179 --> 00:05:39,480 COMMUNITY, FROM INSTITUTIONS, 151 00:05:39,480 --> 00:05:44,185 FROM A RANGE OF INDIVIDUALS AND 152 00:05:44,185 --> 00:05:45,486 ORGANIZATIONS THAT SAID PEER 153 00:05:45,486 --> 00:05:49,424 REVIEW IS TOO COMPLICATED. 154 00:05:49,424 --> 00:05:51,793 THE REVIEW CRITERIA INCLUDES 155 00:05:51,793 --> 00:05:53,361 LOTS OF DIFFERENT 156 00:05:53,361 --> 00:05:54,996 CONSIDERATIONS, AND IF YOU HAVE 157 00:05:54,996 --> 00:05:59,600 BEEN A REVIEWER, YOU KNOW THE 158 00:05:59,600 --> 00:06:00,868 REVIEW GUIDELINES SOMETIMES ARE 159 00:06:00,868 --> 00:06:02,036 AS LONG AS THE APPLICATIONINGS 160 00:06:02,036 --> 00:06:03,204 THEMSELVES AND THE 161 00:06:03,204 --> 00:06:05,840 CONSIDERATIONS AWR SUPP YOU'RE D 162 00:06:05,840 --> 00:06:06,407 TO THINK. 163 00:06:06,407 --> 00:06:08,776 IT HAPPENS FOR A REASON BUT ALSO 164 00:06:08,776 --> 00:06:10,111 THE END RESULT WAS THE REVIEWERS 165 00:06:10,111 --> 00:06:12,180 WERE FACING A LOT OF 166 00:06:12,180 --> 00:06:13,381 DISTRACTIONS FROM THEIR PRIMARY 167 00:06:13,381 --> 00:06:14,148 GOAL. 168 00:06:14,148 --> 00:06:15,483 THEIR PRIMARY GOAL IS TO ASSESS 169 00:06:15,483 --> 00:06:16,350 THE SCIENTIFIC MERIT. 170 00:06:16,350 --> 00:06:17,652 WE WANT THEM TO REALLY -- WE 171 00:06:17,652 --> 00:06:21,923 WANT TO GET THEIR INPUT ON WHAT 172 00:06:21,923 --> 00:06:24,659 WILL THE CONTRIBUTION OF THIS 173 00:06:24,659 --> 00:06:29,363 RESEARCH BE, ACHED T AND THEY HO 174 00:06:29,363 --> 00:06:30,364 ANSWER SO MANY LITTLE QUESTIONS 175 00:06:30,364 --> 00:06:31,365 AND CONSIDER SO MANY OTHER 176 00:06:31,365 --> 00:06:32,533 CONSIDERATIONS AS PART OF THAT 177 00:06:32,533 --> 00:06:34,402 PROCESS, IT WAS EASY TO GET THAT 178 00:06:34,402 --> 00:06:35,503 BIG PICTURE GOAL LOST. 179 00:06:35,503 --> 00:06:41,742 SO THAT WAS THE FIRST. 180 00:06:41,742 --> 00:06:43,811 THE SECOND, AGAIN WAS JUST KIND 181 00:06:43,811 --> 00:06:45,112 OF ONGOING INPUT THAT WE WERE 182 00:06:45,112 --> 00:06:49,383 RECEIVING WITH CONCERNS ABOUT 183 00:06:49,383 --> 00:06:53,554 COMMENTS RELATED TO INFLUENCE OF 184 00:06:53,554 --> 00:06:55,723 INVESTIGATORS AND INSTITUTIONS 185 00:06:55,723 --> 00:06:57,058 AND REPUTATIONAL BIAS. 186 00:06:57,058 --> 00:06:59,794 SO WELL-KNOWN INSTITUTIONS, 187 00:06:59,794 --> 00:07:01,863 WELL-KNOWN INVESTIGATORS WERE 188 00:07:01,863 --> 00:07:02,396 GETTING A PASS. 189 00:07:02,396 --> 00:07:03,931 PEOPLE WERE ASSUMING, OH, THEY 190 00:07:03,931 --> 00:07:05,032 KNOW WHAT THEY'RE DOING, THEY 191 00:07:05,032 --> 00:07:07,335 CAN TAKE CARE OF IT, YEAH, THEY 192 00:07:07,335 --> 00:07:08,736 HAVEN'T REALLY OUTLINED THE 193 00:07:08,736 --> 00:07:09,971 DETAILS BUT IT'S OKAY, THEY 194 00:07:09,971 --> 00:07:14,008 KNOW. 195 00:07:14,008 --> 00:07:15,543 AND IN THE CONTEXT OF A FULL 196 00:07:15,543 --> 00:07:16,511 RANGE OF APPLICATIONS WHERE 197 00:07:16,511 --> 00:07:18,145 WE'RE REALLY TRYING TO ASSESS 198 00:07:18,145 --> 00:07:19,146 MERIT, THAT'S A PROBLEM BECAUSE 199 00:07:19,146 --> 00:07:20,781 IT MEANS THAT M ALLOCATIONS ARE 200 00:07:20,781 --> 00:07:22,350 BEING ASSESSED SEPARATELY 201 00:07:22,350 --> 00:07:24,185 DEPENDING ON HOW WELL SOMEONE IS 202 00:07:24,185 --> 00:07:24,585 KNOWN. 203 00:07:24,585 --> 00:07:25,486 AND THAT'S NOT THE GOAL. 204 00:07:25,486 --> 00:07:26,921 THE GOAL IS REALLY TO ASSESS 205 00:07:26,921 --> 00:07:29,857 WHAT'S IN THE APPLICATION AND 206 00:07:29,857 --> 00:07:32,727 GIVE EVERYBODY KIND OF THE LEVEL 207 00:07:32,727 --> 00:07:33,461 PLAYING GROUND. 208 00:07:33,461 --> 00:07:39,367 SO WHAT WILL CHANGE WITH THE 209 00:07:39,367 --> 00:07:40,301 CHANGES COMING. 210 00:07:40,301 --> 00:07:42,537 FIRST IS WE HAVE ORGANIZED THE 211 00:07:42,537 --> 00:07:43,538 CURRENT FIVE REVIEW CRITERIA, 212 00:07:43,538 --> 00:07:45,172 THOSE WERE STAY THE SAME BUT 213 00:07:45,172 --> 00:07:47,041 THEY'RE NOT ORGANIZED INTO THREE 214 00:07:47,041 --> 00:07:47,275 FACTORS. 215 00:07:47,275 --> 00:07:48,543 IN THE NEXT SLIDE, I'LL SHOW YOU 216 00:07:48,543 --> 00:07:49,544 WHAT THOSE ARE. 217 00:07:49,544 --> 00:07:51,846 THE INVESTIGATOR AND THE 218 00:07:51,846 --> 00:07:53,281 ENVIRONMENT WILL NO LONGER BE 219 00:07:53,281 --> 00:07:57,084 KIND OF A FULL, ELABORATE 220 00:07:57,084 --> 00:07:57,752 ASSESSMENT. 221 00:07:57,752 --> 00:07:59,820 REVIEWERS ARE ASKED TO SIMPLY 222 00:07:59,820 --> 00:08:04,759 FOCUS ON WHETHER THE RESOURCES 223 00:08:04,759 --> 00:08:06,727 AND EXPERTISE ARE APPROPRIATE OR 224 00:08:06,727 --> 00:08:07,228 NOT. 225 00:08:07,228 --> 00:08:08,362 IF APPROPRIATE, WE'RE DONE. 226 00:08:08,362 --> 00:08:11,198 IF NOT, WE WANT TO HAVE GAPS 227 00:08:11,198 --> 00:08:13,301 IDENTIFIED. 228 00:08:13,301 --> 00:08:15,136 >> EXCUSE THE INTERRUPTION. 229 00:08:15,136 --> 00:08:16,437 ARE THESE CHANGES YOU'RE 230 00:08:16,437 --> 00:08:17,872 DESCRIBING CURRENT OR TO BE 231 00:08:17,872 --> 00:08:18,973 IMPLEMENTED AT A SPECIFIC FUTURE 232 00:08:18,973 --> 00:08:19,173 DATE? 233 00:08:19,173 --> 00:08:20,541 >> TO BE IMPLEMENTED STARTING 234 00:08:20,541 --> 00:08:23,144 WITH APPLICATIONS JANUARY 25TH 235 00:08:23,144 --> 00:08:25,546 OF NEXT YEAR. 236 00:08:25,546 --> 00:08:34,288 I HAVE A SLIDE ON THAT TOO. 237 00:08:34,288 --> 00:08:35,856 THERE ARE A FEW OTHER CHANGES, 238 00:08:35,856 --> 00:08:38,225 SOME OF THE ADDITIONAL REVIEW 239 00:08:38,225 --> 00:08:40,061 CRITERIA SPECIFICALLY RELATED TO 240 00:08:40,061 --> 00:08:43,564 INCLUSIONS IN CLINICAL TRIALS 241 00:08:43,564 --> 00:08:45,232 ARE JUST KIND OF WRAPPED UP INTO 242 00:08:45,232 --> 00:08:46,434 APPROACH, SO THEY USED TO BE 243 00:08:46,434 --> 00:08:47,401 CONSIDERED AS PART OF APPROACH 244 00:08:47,401 --> 00:08:48,836 AND THEN THE SECTION AT THE END 245 00:08:48,836 --> 00:08:51,238 TO KIND OF TOUCH BACK ON THEM, 246 00:08:51,238 --> 00:08:54,408 THAT CREATED A LOT OF CONFUSION 247 00:08:54,408 --> 00:08:55,843 AND DUPLICATION, AND THEN WE'VE 248 00:08:55,843 --> 00:08:56,811 MOVED ANY OF THE OTHER 249 00:08:56,811 --> 00:08:58,012 CONSIDERATIONS THAT CAN BE 250 00:08:58,012 --> 00:09:00,648 CONSIDERED BY NIH STAFF OUT OF 251 00:09:00,648 --> 00:09:02,617 THE REVIEW ENTIRELY FOR THE PEER 252 00:09:02,617 --> 00:09:07,221 REVIEWERS. 253 00:09:07,221 --> 00:09:08,456 SO THIS IS JUST KIND OF A 254 00:09:08,456 --> 00:09:10,391 SNAPSHOT OF A SUMMARY OF WHAT I 255 00:09:10,391 --> 00:09:12,326 JUST SAID, SO AS I MENTIONED, 256 00:09:12,326 --> 00:09:17,064 THE MAIN FACTORS THAT WE'LL BE 257 00:09:17,064 --> 00:09:18,466 FOCUSING ON, REVIEWERS WILL BE 258 00:09:18,466 --> 00:09:19,900 ASKED TO FOCUS ON IS, ONE, THE 259 00:09:19,900 --> 00:09:20,868 IMPORTANCE OF THE RESEARCH, 260 00:09:20,868 --> 00:09:22,637 WHICH INCLUDES AND INCORPORATES 261 00:09:22,637 --> 00:09:23,871 SIGNIFICANCE AND INNOVATION, SO 262 00:09:23,871 --> 00:09:25,940 REALLY WHAT IS THE VALUE OF THE 263 00:09:25,940 --> 00:09:27,441 QUESTIONS AND THE PROJECT BEING 264 00:09:27,441 --> 00:09:28,843 PROPOSED. 265 00:09:28,843 --> 00:09:31,579 FACTOR TWO IS THE RIGOR AND 266 00:09:31,579 --> 00:09:32,013 FEASIBILITY. 267 00:09:32,013 --> 00:09:33,514 CAN IT BE DONE, CAN IT BE DONE 268 00:09:33,514 --> 00:09:35,650 WELL, WILL IT BE REPLICABLE, ALL 269 00:09:35,650 --> 00:09:37,618 THOSE CONSIDERATIONS, AND AS I 270 00:09:37,618 --> 00:09:40,554 MENTIONED, THAT IS WHERE 271 00:09:40,554 --> 00:09:41,889 CONSIDERATIONS RELATED TO THE 272 00:09:41,889 --> 00:09:43,190 STUDY TIMELINE FOR CLINICAL 273 00:09:43,190 --> 00:09:44,692 TRIALS AS WELL AS THE INCLUSIONS 274 00:09:44,692 --> 00:09:49,430 OF THE SAMPLE FOR HUMAN SUBJECTS 275 00:09:49,430 --> 00:09:51,165 APPLICATIONS WILL BE WRAPPED 276 00:09:51,165 --> 00:09:52,933 INTO THAT FACTOR AND THAT 277 00:09:52,933 --> 00:09:55,036 CONSIDERATION AT THAT POINT. 278 00:09:55,036 --> 00:09:56,237 I ALREADY MENTIONED THE 279 00:09:56,237 --> 00:09:57,304 EXPERTISE AND RESOURCES. 280 00:09:57,304 --> 00:10:01,575 THESE WILL NOT GET A SEPARATE 281 00:10:01,575 --> 00:10:02,109 FACTOR SCORE. 282 00:10:02,109 --> 00:10:03,511 IT'S JUST KIND OF A PASS/FAIL, 283 00:10:03,511 --> 00:10:05,279 SO YES, THERE'S APPROPRIATE 284 00:10:05,279 --> 00:10:07,915 RESOURCES OR THERE ARE GAPS 285 00:10:07,915 --> 00:10:08,349 IDENTIFIED. 286 00:10:08,349 --> 00:10:09,984 IF GAPS ARE IDENTIFIED, THE 287 00:10:09,984 --> 00:10:11,185 REVIEWERS CAN SPECIFY WHAT THOSE 288 00:10:11,185 --> 00:10:13,921 GAPS ARE. 289 00:10:13,921 --> 00:10:23,230 IN TERMS OF HUMAN SUBJECTS, 290 00:10:23,230 --> 00:10:26,834 VERTEBRATE ANIMAL PROTECTIONS, 291 00:10:26,834 --> 00:10:27,835 BIOHAZARDS ARE STILL PART OF THE 292 00:10:27,835 --> 00:10:29,270 REVIEW AND WILL BE TOUCHED ON 293 00:10:29,270 --> 00:10:30,237 AND CAN AFFECT THE SCORE. 294 00:10:30,237 --> 00:10:31,739 AS I MENTIONED WITH THE 295 00:10:31,739 --> 00:10:34,475 EXCEPTION OF BUDGET AND CHEMICAL 296 00:10:34,475 --> 00:10:35,910 AND BIOLOGICAL RESOURCE 297 00:10:35,910 --> 00:10:36,544 AUTHENTICATION, ALL OTHER 298 00:10:36,544 --> 00:10:37,378 CONSIDERATIONS HAVE BEEN MOVED 299 00:10:37,378 --> 00:10:38,646 OUT OF THE FIRST LEVEL OF PEER 300 00:10:38,646 --> 00:10:40,948 REVIEW. 301 00:10:40,948 --> 00:10:43,451 THIS IS AFFECTING MOST OF THE 302 00:10:43,451 --> 00:10:46,520 RESEARCH PROJECT GRANT 303 00:10:46,520 --> 00:10:47,488 APPLICATIONS, AND THERE ARE A 304 00:10:47,488 --> 00:10:49,690 LOT OF DIFFERENT ACTIVITY CODES. 305 00:10:49,690 --> 00:10:51,525 THIS IS A LIST OF ALL THOSE THAT 306 00:10:51,525 --> 00:10:53,194 WILL BE CHANGING. 307 00:10:53,194 --> 00:10:54,862 THERE'S A HANDFUL THAT WON'T, 308 00:10:54,862 --> 00:10:57,331 BUT FOR THE MOST PART, THE VAST 309 00:10:57,331 --> 00:10:59,200 MAJORITY OF THE RESEARCH 310 00:10:59,200 --> 00:11:00,468 APPLICATIONS WILL BE MOVING TO 311 00:11:00,468 --> 00:11:04,038 THE NEW FRAMEWORK. 312 00:11:04,038 --> 00:11:05,439 ONE OF THE EXCEPTIONS FOR THE 313 00:11:05,439 --> 00:11:06,807 RESEARCH APPLICATIONS IS THE 314 00:11:06,807 --> 00:11:09,477 SMALL BUSINESS, THOSE WILL 315 00:11:09,477 --> 00:11:12,780 CONTINUE UNDER THE CURRENT 316 00:11:12,780 --> 00:11:15,116 GUIDELINES FOR THE TIME BEING. 317 00:11:15,116 --> 00:11:16,383 AND AS MENTIONED AND I'LL 318 00:11:16,383 --> 00:11:17,351 MENTION THIS A COUPLE OTHER 319 00:11:17,351 --> 00:11:18,986 TIMES, THIS IS BEING 320 00:11:18,986 --> 00:11:20,421 IMPLEMENTED -- SO WE'RE RIGHT AT 321 00:11:20,421 --> 00:11:21,722 KIND OF THIS CRITICAL AND MOST 322 00:11:21,722 --> 00:11:23,724 CONFUSING TIME OF THE 323 00:11:23,724 --> 00:11:25,359 IMPLEMENTATION, BECAUSE IT WILL 324 00:11:25,359 --> 00:11:27,428 BE -- IT'S RELEVANT FOR 325 00:11:27,428 --> 00:11:30,498 APPLICATIONS WITH DUE DATES 326 00:11:30,498 --> 00:11:32,133 JANUARY 25TH, THE NEXT SET OF 327 00:11:32,133 --> 00:11:33,868 DUE DATES. 328 00:11:33,868 --> 00:11:37,805 AND THAT WILL BE FOR THE SUMMER 329 00:11:37,805 --> 00:11:39,673 REVIEW MEETINGS AND OCTOBER 330 00:11:39,673 --> 00:11:43,410 COUNCIL. 331 00:11:43,410 --> 00:11:44,712 SO LET ME TELL YOU A LITTLE BIT 332 00:11:44,712 --> 00:11:47,982 ABOUT SOME OF THE MAJOR CHANGES 333 00:11:47,982 --> 00:11:49,183 THAT YOU SHOULD BE LOOKING FOR 334 00:11:49,183 --> 00:11:56,423 AND AWARE OF, AS WE IMPLEMENT IA 335 00:11:56,423 --> 00:11:57,691 PRETTY MAJOR CHANGE TO REVIEW. 336 00:11:57,691 --> 00:11:58,425 THE FIRST IS THAT OUR 337 00:11:58,425 --> 00:12:00,127 APPLICATIONS HAVE TO COME IN TO 338 00:12:00,127 --> 00:12:01,829 CURRENT NOTICES OF FUNDING 339 00:12:01,829 --> 00:12:04,031 OPPORTUNITIES OR NOFOs, SO WE 340 00:12:04,031 --> 00:12:06,967 ARE IN THE PROCESS OF REISSUING 341 00:12:06,967 --> 00:12:09,036 ALL NOFOs THAT ARE CURRENTLY 342 00:12:09,036 --> 00:12:13,207 OUT THERE SO THAT THERE IS -- SO 343 00:12:13,207 --> 00:12:14,408 THAT ALL OF THE CURRENT ONES 344 00:12:14,408 --> 00:12:20,214 HAVE A NEW RELATED NOFO. 345 00:12:20,214 --> 00:12:21,515 SO YOU WANT TO MAKE SURE YOU'RE 346 00:12:21,515 --> 00:12:22,616 PAYING ATTENTION TO THE NOFO. 347 00:12:22,616 --> 00:12:25,820 YOU CAN TELL WILL HAVE THE DATES 348 00:12:25,820 --> 00:12:28,189 ELIGIBLE, AND THEY ALL ARE BEING 349 00:12:28,189 --> 00:12:30,057 UPDATED TO REFLECT THE REVIEW 350 00:12:30,057 --> 00:12:31,358 FRAMEWORK, SO THAT SECTION 351 00:12:31,358 --> 00:12:33,761 5 WHERE THE REVIEW CRITERIA ARE 352 00:12:33,761 --> 00:12:36,130 SPELLED OUT IS WHAT IS BEING 353 00:12:36,130 --> 00:12:39,667 CHANGED IN THESE. 354 00:12:39,667 --> 00:12:40,768 SO THAT'S A LEGAL OBLIGATION 355 00:12:40,768 --> 00:12:42,970 THAT WE DO HAVE TO SPECIFY HOW 356 00:12:42,970 --> 00:12:44,004 APPLICATIONS ARE REVIEWED, SO 357 00:12:44,004 --> 00:12:45,139 WE'RE IN THE PROCESS OF 358 00:12:45,139 --> 00:12:45,406 REISSUING. 359 00:12:45,406 --> 00:12:47,007 MANY HAVE ALREADY BEEN REISSUED. 360 00:12:47,007 --> 00:12:51,579 AGAIN, ALL FOR DATES STARTING -- 361 00:12:51,579 --> 00:12:52,813 EARLIEST RECEIVE DATES OF 362 00:12:52,813 --> 00:12:55,182 JANUARY 25TH, SO ANYTHING STILL 363 00:12:55,182 --> 00:12:58,552 IN THE FUTURE. 364 00:12:58,552 --> 00:12:59,920 THE PARENT FUNDING 365 00:12:59,920 --> 00:13:00,888 OPPORTUNITIES, THE FINISHING 366 00:13:00,888 --> 00:13:02,556 TOUCHES ARE STILL HAPPENING. 367 00:13:02,556 --> 00:13:04,291 WE ARE EXPECTING THOSE TO BE 368 00:13:04,291 --> 00:13:04,825 PUBLISHED ANY DAY. 369 00:13:04,825 --> 00:13:06,360 IN FACT, I CHECKED YESTERDAY AND 370 00:13:06,360 --> 00:13:08,662 THEY WEREN'T UP. 371 00:13:08,662 --> 00:13:10,731 I DID NOT CHECK AGAIN TODAY, BUT 372 00:13:10,731 --> 00:13:11,932 REALLY, THEY SHOULD BE UP ANY 373 00:13:11,932 --> 00:13:13,367 TIME, SO WATCH FOR THOSE. 374 00:13:13,367 --> 00:13:17,638 AND I'VE INCLUDED LINKS TO THE 375 00:13:17,638 --> 00:13:19,039 NIH GUIDE WHERE ALL THE NOFOs 376 00:13:19,039 --> 00:13:21,775 ARE PUBLISHED, AND IF YOU'RE 377 00:13:21,775 --> 00:13:23,277 INTERESTED IN SUBSCRIBING TO THE 378 00:13:23,277 --> 00:13:25,279 WEEKLY GUIDE UPDATES, THEY'LL 379 00:13:25,279 --> 00:13:27,147 SEND YOU AN EMAIL WITH ALL THOSE 380 00:13:27,147 --> 00:13:27,481 UPDATES. 381 00:13:27,481 --> 00:13:31,952 SO PAY ATTENTION TO THAT. 382 00:13:31,952 --> 00:13:32,953 MAKE SURE YOUR APPLICATION CAN 383 00:13:32,953 --> 00:13:36,123 BE RECEIVED. 384 00:13:36,123 --> 00:13:37,391 LET ME TOUCH ON APPLICATION 385 00:13:37,391 --> 00:13:37,858 FORMS. 386 00:13:37,858 --> 00:13:39,727 SO SIMPLIFIED REVIEW -- THE 387 00:13:39,727 --> 00:13:42,029 SIMPLIFIED REVIEW FRAMEWORK FOR 388 00:13:42,029 --> 00:13:43,664 THE RESEARCH PROJECT GRANTS DOES 389 00:13:43,664 --> 00:13:46,400 NOT INVOLVE A CHANGE IN THE 390 00:13:46,400 --> 00:13:46,934 APPLICATION, PER SE. 391 00:13:46,934 --> 00:13:50,104 THE APPLICATION IS THE SAME. 392 00:13:50,104 --> 00:13:53,274 THERE IS A SIMULTANEOUS AND 393 00:13:53,274 --> 00:13:54,608 CONCURRENT CHANGE IN FORMS THAT 394 00:13:54,608 --> 00:13:58,112 IS HAPPENING, HAPPENS EVERY FEW 395 00:13:58,112 --> 00:14:00,514 YEARS AND THIS IS THE TIME, SO 396 00:14:00,514 --> 00:14:03,450 FORMS I WILL BE COMING FOR THIS 397 00:14:03,450 --> 00:14:04,885 SAME DUE DATE AND MOVING 398 00:14:04,885 --> 00:14:06,086 FORWARD, SO THERE WILL BE A NEW 399 00:14:06,086 --> 00:14:08,255 SET OF APPLICATIONS WITH SOME 400 00:14:08,255 --> 00:14:09,790 MINOR CHANGES. 401 00:14:09,790 --> 00:14:12,092 THE RESEARCH PLAN, ALL OF THE -- 402 00:14:12,092 --> 00:14:13,093 KIND OF THE GUTS OF THE 403 00:14:13,093 --> 00:14:14,328 APPLICATION ARE THE SAME. 404 00:14:14,328 --> 00:14:15,362 THAT'S NOT CHANGING. 405 00:14:15,362 --> 00:14:21,735 THERE'S JUST SOME OTHERS. 406 00:14:21,735 --> 00:14:23,470 AGAIN THAT'S ANOTHER KIND OF ANY 407 00:14:23,470 --> 00:14:25,606 DAY NOW POSTING OF THOSE FORMS, 408 00:14:25,606 --> 00:14:27,741 SO JUST WAITING FOR THE FINAL 409 00:14:27,741 --> 00:14:29,610 RELEASE OF THOSE WITH THE FULL 410 00:14:29,610 --> 00:14:32,579 SUITE OF INFORMATION THAT YOU'LL 411 00:14:32,579 --> 00:14:33,580 BE NEEDED. 412 00:14:33,580 --> 00:14:38,252 AND I WILL JAI ALAI THAT THERE 413 00:14:38,252 --> 00:14:39,753 IS INFORMATION AND KIND OF 414 00:14:39,753 --> 00:14:40,354 INSTRUCTIONS, PREINSTRUCTIONS 415 00:14:40,354 --> 00:14:41,422 AVAILABLE, SO THAT IF YOU ARE 416 00:14:41,422 --> 00:14:44,158 WORKING ON A GRANT NOW, YOU CAN 417 00:14:44,158 --> 00:14:46,126 SEE WHAT'S EXPECTED TO COME, AND 418 00:14:46,126 --> 00:14:48,095 THERE'S SOME INFORMATION 419 00:14:48,095 --> 00:14:57,271 AVAILABLE THROUGH THESE LINKS. 420 00:14:57,271 --> 00:15:00,674 SO THOSE ARE THE TWO BIG ONES IN 421 00:15:00,674 --> 00:15:02,042 TERMS OF WHAT APPLICANTS WILL 422 00:15:02,042 --> 00:15:03,844 NEED TO GET APPLICATIONS IN FOR 423 00:15:03,844 --> 00:15:05,813 SOME OF THESE CHANGES. 424 00:15:05,813 --> 00:15:08,315 THERE'S OBVIOUSLY A WHOLE LOT OF 425 00:15:08,315 --> 00:15:12,019 WORK BEING DONE IN THE 426 00:15:12,019 --> 00:15:13,253 BACKGROUND TO SUPPORT THIS MAJOR 427 00:15:13,253 --> 00:15:13,587 CHANGE. 428 00:15:13,587 --> 00:15:14,788 WE'RE CHANGING ALL OF THE 429 00:15:14,788 --> 00:15:17,624 SYSTEMS, SO YOU MAY SEE SOME 430 00:15:17,624 --> 00:15:20,260 CHANGES, CERTAINLY IF YOU'RE A 431 00:15:20,260 --> 00:15:21,228 REVIEWER, IN THE SUMMER YOU'LL 432 00:15:21,228 --> 00:15:22,763 SEE CHANGES TO OUR SYSTEM, BUT 433 00:15:22,763 --> 00:15:24,298 WE'RE UPDATING ALL OF THE 434 00:15:24,298 --> 00:15:26,166 SYSTEMS FOR THE NEW FACTORS 435 00:15:26,166 --> 00:15:29,970 INSTEAD OF THE OLD CRITERION 436 00:15:29,970 --> 00:15:31,972 SCORES, THE NOFOs, ALL THAT. 437 00:15:31,972 --> 00:15:34,575 SO THAT'S HAPPENING. 438 00:15:34,575 --> 00:15:37,745 WE CONTINUE TO DEVELOP AND POST 439 00:15:37,745 --> 00:15:38,946 GUIDANCE FOR APPLICANT AND 440 00:15:38,946 --> 00:15:42,883 REVIEWERS, AND I HAVE A SLIDE IN 441 00:15:42,883 --> 00:15:46,053 A COUPLE OF SLIDES THAT GIVES 442 00:15:46,053 --> 00:15:47,154 YOU KIND OF THE MAIN LINK WHERE 443 00:15:47,154 --> 00:15:48,389 EVERYTHING YOU NEED TO KNOW AS 444 00:15:48,389 --> 00:15:51,191 AN APPLICANT OR A REVIEWER IS 445 00:15:51,191 --> 00:15:55,229 POSTED, AND THOSE ARE UPDATED 446 00:15:55,229 --> 00:15:55,896 PROBABLY WEEKLY. 447 00:15:55,896 --> 00:15:56,663 THERE'S JUST SOMETHING NEW UP 448 00:15:56,663 --> 00:15:58,632 THERE ALL THE TIME, ONGOING 449 00:15:58,632 --> 00:16:00,367 FREQUENTLY ASKED QUESTIONS, 450 00:16:00,367 --> 00:16:01,902 RESOURCES AS THEY'RE AVAILABLE. 451 00:16:01,902 --> 00:16:03,771 WE'RE PRETTY CAREFUL, WE HAVE A 452 00:16:03,771 --> 00:16:07,508 PRETTY ELABORATE AND COMPLEX 453 00:16:07,508 --> 00:16:08,475 ROLLOUT PLAN. 454 00:16:08,475 --> 00:16:11,111 AS YOU KNOW, AND AS HAS ALREADY 455 00:16:11,111 --> 00:16:14,715 BEEN HIGHLIGHTED THIS MORNING, 456 00:16:14,715 --> 00:16:16,016 WE HAVE CURRENT APPLICATIONS 457 00:16:16,016 --> 00:16:19,620 THAT ARE CONTINUING TO COME IN 458 00:16:19,620 --> 00:16:21,155 AND BE REVIEWED UNDER THE 459 00:16:21,155 --> 00:16:22,356 CURRENT SYSTEM RIGHT NOW. 460 00:16:22,356 --> 00:16:26,193 WE'RE TRYING TO PREPARE FOR THE 461 00:16:26,193 --> 00:16:30,030 COMING SYSTEM AND SO WE'RE 462 00:16:30,030 --> 00:16:32,766 REALLY CAREFUL ABOUT WHEN WE 463 00:16:32,766 --> 00:16:33,967 RELEASE INFORMATION SO AS NOT TO 464 00:16:33,967 --> 00:16:34,735 CONFUSE PEOPLE. 465 00:16:34,735 --> 00:16:39,206 DWOAPT WWE DON'T WANT TWOCOMPETS 466 00:16:39,206 --> 00:16:40,074 OUT THERE RIGHT NOW. 467 00:16:40,074 --> 00:16:41,041 SO ALMOST EVERYTHING YOU FIND 468 00:16:41,041 --> 00:16:42,276 RIGHT NOW IS GOING TO BE RELATED 469 00:16:42,276 --> 00:16:45,112 TO THE CURRENT SYSTEM, AND NOT 470 00:16:45,112 --> 00:16:47,781 RELEVANT FOR THE FUTURE STARTING 471 00:16:47,781 --> 00:16:50,150 IN THE SPRING, SO WE DO HAVE 472 00:16:50,150 --> 00:16:51,585 INFORMATION AVAILABLE FOR 473 00:16:51,585 --> 00:16:52,786 APPLICATIONS AND WHAT TO EXPECT 474 00:16:52,786 --> 00:16:54,855 FOR WRITING YOUR APPLICATIONS 475 00:16:54,855 --> 00:16:55,989 NOW, AND YOU'LL SEE MORE AND 476 00:16:55,989 --> 00:16:58,025 MORE OF THAT AGAIN KIND OF ON A 477 00:16:58,025 --> 00:17:00,094 REGULAR BASIS, NOW THAT THE 478 00:17:00,094 --> 00:17:02,062 DEADLINES FOR THE CURRENT ROUND 479 00:17:02,062 --> 00:17:04,164 OF REVIEW ARE DONE, AND ALMOST 480 00:17:04,164 --> 00:17:05,566 EVERYTHING NOW IN TERMS OF 481 00:17:05,566 --> 00:17:06,667 PREPARING APPLICATIONS IS 482 00:17:06,667 --> 00:17:09,069 RELATED TO THE NEXT SYSTEM. 483 00:17:09,069 --> 00:17:11,438 SO THAT IS COMING ONLINE, AND 484 00:17:11,438 --> 00:17:14,007 THERE ARE A LOT OF INFORMATION 485 00:17:14,007 --> 00:17:15,409 RESOURCES AVAILABLE. 486 00:17:15,409 --> 00:17:17,277 FOR THE REVIEW, THE SAME THING 487 00:17:17,277 --> 00:17:18,212 WILL HAPPEN IN THE SPRING. 488 00:17:18,212 --> 00:17:19,446 SO RIGHT NOW ALL OF THE 489 00:17:19,446 --> 00:17:20,447 INFORMATION ABOUT REVIEW IS 490 00:17:20,447 --> 00:17:21,982 STILL BASED ON THE OLD SYSTEM, 491 00:17:21,982 --> 00:17:24,151 BUT STARTING IN MARCH AND APRIL, 492 00:17:24,151 --> 00:17:25,686 IT'S ALL GOING TO CONVERT AND 493 00:17:25,686 --> 00:17:26,120 TRANSITION OVER. 494 00:17:26,120 --> 00:17:30,524 SO WE HAVE LOTS OF MATERIALS, 495 00:17:30,524 --> 00:17:31,391 GUIDELINES, TRAINING FOR 496 00:17:31,391 --> 00:17:33,994 REVIEWERS, TRAINING FOR STAFF, A 497 00:17:33,994 --> 00:17:37,030 WHOLE RANGE OF RESOURCES AND 498 00:17:37,030 --> 00:17:38,232 MATERIALS THAT WILL BE ROLLED 499 00:17:38,232 --> 00:17:40,167 OUT IN MARCH AND APRIL, ONCE THE 500 00:17:40,167 --> 00:17:41,335 CURRENT SET OF REVIEWS ARE DONE 501 00:17:41,335 --> 00:17:44,938 SO THAT WE DON'T HAVE THE 502 00:17:44,938 --> 00:17:50,644 CONFUSION WITH REVIEWERS. 503 00:17:50,644 --> 00:17:53,680 A FEW TIPS FOR PREPARING 504 00:17:53,680 --> 00:17:54,781 APPLICATIONS RELATED TO THE NEW 505 00:17:54,781 --> 00:17:57,317 FRAMEWORK. 506 00:17:57,317 --> 00:17:58,285 AS MENTIONED, AND THIS IS ONE OF 507 00:17:58,285 --> 00:17:59,586 THE MOST COMMONLY ASKED 508 00:17:59,586 --> 00:18:02,556 QUESTIONS, THE FORM AND WHAT THE 509 00:18:02,556 --> 00:18:03,524 APPLICATION WILL LOOK LIKE IS 510 00:18:03,524 --> 00:18:06,493 NOT CHANGING. 511 00:18:06,493 --> 00:18:08,028 SO YOU CAN CONTINUE TO WORK ON 512 00:18:08,028 --> 00:18:09,563 YOUR IDEAS AND DEVELOP THE 513 00:18:09,563 --> 00:18:12,933 RESEARCH PLANS, THOSE ARE NOT 514 00:18:12,933 --> 00:18:17,204 CHANGING. 515 00:18:17,204 --> 00:18:21,808 WE ALWAYS ENCOURAGE APPLICANTS 516 00:18:21,808 --> 00:18:23,010 TO CONSIDER WHEN THEY'RE 517 00:18:23,010 --> 00:18:24,311 PREPARING THEIR APPLICATION, THE 518 00:18:24,311 --> 00:18:26,513 NOFOs CAREFULLY, ESPECIALLY 519 00:18:26,513 --> 00:18:28,815 SECTIONS 4, WHICH OUTLINE THE 520 00:18:28,815 --> 00:18:30,551 INTERESTS OF NIH IN TERMS OF THE 521 00:18:30,551 --> 00:18:32,319 NATURE OF THE M ACATIONS AND HOW 522 00:18:32,319 --> 00:18:34,821 TO PREPARE THOSE AS WELL AS 523 00:18:34,821 --> 00:18:36,890 SECTION 5, WHICH IS THE REVIEW 524 00:18:36,890 --> 00:18:37,991 CRITERIA. 525 00:18:37,991 --> 00:18:39,426 SO IT MAY CHANGE A LITTLE BIT 526 00:18:39,426 --> 00:18:42,629 HOW YOU PUT YOUR APPLICATION 527 00:18:42,629 --> 00:18:43,664 TOGETHER, BUT THE APPLICATION 528 00:18:43,664 --> 00:18:48,268 ITSELF WILL LOOK THE SAME, AND 529 00:18:48,268 --> 00:18:49,036 THE GENERAL CONSIDERATIONS ARE 530 00:18:49,036 --> 00:18:49,603 NOT CHANGING. 531 00:18:49,603 --> 00:18:54,508 IF YOU'RE NOT AWARE, ALSO JUST 532 00:18:54,508 --> 00:18:57,778 MAKE SURE AND REFER YOU TO 533 00:18:57,778 --> 00:19:01,748 ASSIST AND GRANTS.GOV WORK SPACE 534 00:19:01,748 --> 00:19:03,150 TECHNOLOGIES THAT CAN COPY -- 535 00:19:03,150 --> 00:19:04,885 HELP YOU COPY AND TRANSFER 536 00:19:04,885 --> 00:19:07,087 APPLICATIONS FROM ONE FORM TO 537 00:19:07,087 --> 00:19:07,654 ANOTHER. 538 00:19:07,654 --> 00:19:08,822 THESE ARE ALREADY AVAILABLE, BUT 539 00:19:08,822 --> 00:19:11,658 THAT MAY BE HELPFUL AS WE MOVE 540 00:19:11,658 --> 00:19:18,232 INTO FORMS I. 541 00:19:18,232 --> 00:19:19,766 I'LL HIT ON THE COUPLE OF THE 542 00:19:19,766 --> 00:19:20,767 FREQUENTLY ASKED QUESTIONS THAT 543 00:19:20,767 --> 00:19:21,935 COME UP A LOT IN THE 544 00:19:21,935 --> 00:19:22,302 PRESENTATIONS. 545 00:19:22,302 --> 00:19:26,240 SO AGAIN, WHAT IS OUR GOAL IN 546 00:19:26,240 --> 00:19:27,441 THIS, WHAT IS REALLY MOTIVATING 547 00:19:27,441 --> 00:19:28,475 THIS BIG MAJOR CHANGE? 548 00:19:28,475 --> 00:19:30,277 AND IT'S REALLY A GOAL ON 549 00:19:30,277 --> 00:19:31,144 FOCUSING ON IMPROVING THE 550 00:19:31,144 --> 00:19:34,848 QUALITY OF REVIEW BY MAKING SURE 551 00:19:34,848 --> 00:19:35,782 REVIEWERS HAVE THE TIME AND 552 00:19:35,782 --> 00:19:37,985 SPACE TO REALLY FOCUS ON THE 553 00:19:37,985 --> 00:19:39,453 VALUE OF THE RESEARCH AS OPPOSED 554 00:19:39,453 --> 00:19:41,088 TO A LOT OF KIND OF THE 555 00:19:41,088 --> 00:19:44,725 NITPICKING DETAILS OR 556 00:19:44,725 --> 00:19:45,592 CONSIDERATIONS THAT OTHER PEOPLE 557 00:19:45,592 --> 00:19:48,428 CAN ASSESS. 558 00:19:48,428 --> 00:19:50,063 WE ALSO WANT A MORE CONSISTENT 559 00:19:50,063 --> 00:19:51,798 APPROACH OR CONSIDERATION OF 560 00:19:51,798 --> 00:19:54,668 INVESTIGATOR AND ENVIRONMENT. 561 00:19:54,668 --> 00:19:56,103 SO THOSE ARE THE TWO MAIN 562 00:19:56,103 --> 00:19:56,436 DRIVERS. 563 00:19:56,436 --> 00:19:57,738 IN TERMS OF EVALUATION, THIS IS 564 00:19:57,738 --> 00:20:00,240 A QUESTION, HOW ARE WE GOING TO 565 00:20:00,240 --> 00:20:01,975 KNOW IF IT'S WORKING, WHAT ARE 566 00:20:01,975 --> 00:20:03,744 WE GOING TO DO, HOW WILL WE 567 00:20:03,744 --> 00:20:04,278 ASSESS IT? 568 00:20:04,278 --> 00:20:06,713 WHENEVER YOU DO A LARGE SCALE 569 00:20:06,713 --> 00:20:10,617 CHANGE, WE CAN'T DO KIND OF A 570 00:20:10,617 --> 00:20:11,518 COMPARISON, BUT WE WILL CONTINUE 571 00:20:11,518 --> 00:20:15,455 TO MONITOR CRITIQUES, TO MONITOR 572 00:20:15,455 --> 00:20:17,090 DISCUSSIONS, TO MONITOR SCORING 573 00:20:17,090 --> 00:20:20,661 PATTERNS TO LACK LOOK FOR DEVIS 574 00:20:20,661 --> 00:20:21,461 FROM THE CURRENT AND TO MAKE 575 00:20:21,461 --> 00:20:22,996 SURE WE'VE GOT ALIGNMENT. 576 00:20:22,996 --> 00:20:24,398 LOTS OF TRAINING AND ACTIVITIES 577 00:20:24,398 --> 00:20:28,669 GOING ON IN THAT SPACE. 578 00:20:28,669 --> 00:20:30,003 WE'LL ALSO HAVE SURVEYS FOR 579 00:20:30,003 --> 00:20:31,738 REVIEWERS FOR STAFF, FOR PEOPLE 580 00:20:31,738 --> 00:20:34,241 INVOLVED IN DIFFERENT WAYS, 581 00:20:34,241 --> 00:20:37,878 WE'LL BE ROLLING OUT. 582 00:20:37,878 --> 00:20:40,047 AND THE OTHER QUESTIONS COME IN 583 00:20:40,047 --> 00:20:41,915 AROUND TRAINING, AND THAT'S A 584 00:20:41,915 --> 00:20:44,084 REALLY CRITICAL PIECE OF THIS, 585 00:20:44,084 --> 00:20:48,355 AND WE ARE DOING A TREMENDOUS 586 00:20:48,355 --> 00:20:50,357 AMOUNT OF STAFF TRAINING RIGHT 587 00:20:50,357 --> 00:20:53,627 NOW AND HAVE REVIEWER TRAINING 588 00:20:53,627 --> 00:20:55,362 PLANNED AND RESOURCES READY 589 00:20:55,362 --> 00:20:59,733 INCLUDING TRAINING SLIDES, 590 00:20:59,733 --> 00:21:03,136 VIDEOS, VIDEO TRAINING WITH 591 00:21:03,136 --> 00:21:05,005 CHAIRS, GUIDES TO WRITING 592 00:21:05,005 --> 00:21:06,973 CRITIQUES SO PEOPLE KNOW WHAT IS 593 00:21:06,973 --> 00:21:08,175 APPROPRIATE COMMENTS, WHAT ARE 594 00:21:08,175 --> 00:21:09,276 NOT APPROPRIATE COMMENTS, WHAT 595 00:21:09,276 --> 00:21:11,244 INFORMATION IS WANTED IN EACH OF 596 00:21:11,244 --> 00:21:13,647 THESE FACTORS AND THINGS LIKE 597 00:21:13,647 --> 00:21:15,048 THAT. 598 00:21:15,048 --> 00:21:17,117 SO WE'LL BE DEPLOYING THOSE 599 00:21:17,117 --> 00:21:18,118 STARTING IN THE SPRING AS 600 00:21:18,118 --> 00:21:20,187 MENTIONED. 601 00:21:20,187 --> 00:21:22,956 QUESTION? 602 00:21:22,956 --> 00:21:24,458 >> JUST A COUPLE. 603 00:21:24,458 --> 00:21:25,792 I MEANT TO ASK THEM A LITTLE 604 00:21:25,792 --> 00:21:26,126 EARLIER. 605 00:21:26,126 --> 00:21:27,961 SO CAN YOU JUST CLARIFY, SO 606 00:21:27,961 --> 00:21:29,229 USUALLY IN THE REVIEW SECTION, 607 00:21:29,229 --> 00:21:34,534 IT COMES TO -- ONCE YOU FIND THE 608 00:21:34,534 --> 00:21:35,736 STRENGTHS AND WEAKNESSES, YOU 609 00:21:35,736 --> 00:21:38,038 LOOK AT HUMAN SUBJECTS, YOU LOOK 610 00:21:38,038 --> 00:21:40,006 AT IS THE BUDGET -- DOES THE 611 00:21:40,006 --> 00:21:43,143 BUDGET SEEM OKAY, AND YOU LOOK 612 00:21:43,143 --> 00:21:44,811 AT RESOURCES AND OTHER TYPES OF 613 00:21:44,811 --> 00:21:45,045 GUIDES. 614 00:21:45,045 --> 00:21:48,749 ARE YOU SAYING THOSE ALL GO 615 00:21:48,749 --> 00:21:48,949 AWAY? 616 00:21:48,949 --> 00:21:52,786 >> NO, SO THE HUMAN SUBJECTS, 617 00:21:52,786 --> 00:21:54,755 VERTEBRATE ANIMALS, BIOHAZARDS 618 00:21:54,755 --> 00:21:55,956 ARE STILL PART OF REVIEW. 619 00:21:55,956 --> 00:21:57,391 SO THOSE WILL BE HANDLED IN THE 620 00:21:57,391 --> 00:21:58,692 SAME WAY THEY'RE BEING HANDLED 621 00:21:58,692 --> 00:22:02,529 NOW. 622 00:22:02,529 --> 00:22:03,730 AND WE WANT TO MAKE SURE THAT 623 00:22:03,730 --> 00:22:04,798 THOSE COME UP IN DISCUSSION AND 624 00:22:04,798 --> 00:22:06,233 THERE'S AN OPPORTUNITY FOR 625 00:22:06,233 --> 00:22:07,667 REVIEWERS TO PROVIDE ANY 626 00:22:07,667 --> 00:22:10,637 CONCERNS ABOUT HUMAN SUBJECTS 627 00:22:10,637 --> 00:22:11,838 PROTECTIONS IF RELEVANT OR 628 00:22:11,838 --> 00:22:15,976 VERTEBRATE ANIMALS OR KIND OF -- 629 00:22:15,976 --> 00:22:18,044 SO THOSE ISSUES WILL STILL 630 00:22:18,044 --> 00:22:19,713 REMAIN IN REVIEW SIMILAR TO HOW 631 00:22:19,713 --> 00:22:20,747 THEY ARE NOW. 632 00:22:20,747 --> 00:22:22,149 >> SO BUDGET, NO BUDGET -- 633 00:22:22,149 --> 00:22:26,153 >> SO BUDGET ACTUALLY ALSO IS 634 00:22:26,153 --> 00:22:27,087 STILL INCLUDED. 635 00:22:27,087 --> 00:22:27,788 >> OKAY. 636 00:22:27,788 --> 00:22:30,524 >> IT IS A FACTOR THAT DOES NOT 637 00:22:30,524 --> 00:22:34,995 AFFECT SCORE, SO IS RAISED AFTER 638 00:22:34,995 --> 00:22:37,631 SCORES HAVE BEEN SET BY THE 639 00:22:37,631 --> 00:22:38,165 REVIEWERS. 640 00:22:38,165 --> 00:22:42,002 WE TRY TO MINIMIZE -- THEAZ 641 00:22:42,002 --> 00:22:46,273 PH -- THAT'SPHRASED WRONG. 642 00:22:46,273 --> 00:22:49,543 OUR FOCUS ON REVIEWERS IS REALLY 643 00:22:49,543 --> 00:22:52,078 GETTING REVIEWERS TO FOCUS ON 644 00:22:52,078 --> 00:22:53,713 THE BIG PICTURE, IS THE BUDGET 645 00:22:53,713 --> 00:22:55,582 APPROPRIATE RATHER THAN KIND OF 646 00:22:55,582 --> 00:22:56,683 NITPICKING, WHETHER THEY'RE 647 00:22:56,683 --> 00:22:57,884 GOING TO TOO MANY CONFERENCES OR 648 00:22:57,884 --> 00:22:59,286 BUYING TOO MANY COMPUTERS OR 649 00:22:59,286 --> 00:22:59,820 THINGS LIKE THAT. 650 00:22:59,820 --> 00:23:01,154 SO THAT CONTINUES TO BE OUR GOAL 651 00:23:01,154 --> 00:23:02,889 BUT, YEAH, THAT IS STILL PART OF 652 00:23:02,889 --> 00:23:04,224 THE REGULATIONS THAT REVIEWERS 653 00:23:04,224 --> 00:23:05,759 SHOULD SPEAK ON SO THAT'S STILL 654 00:23:05,759 --> 00:23:05,959 THERE. 655 00:23:05,959 --> 00:23:08,228 >> VERIFYING IS THE SCORE STILL 656 00:23:08,228 --> 00:23:08,462 1 TO 9? 657 00:23:08,462 --> 00:23:11,998 >> THE OVERALL IMPACT SCORE IS 658 00:23:11,998 --> 00:23:14,067 STILL 1 TO 9, SO NO CHANGES TO 659 00:23:14,067 --> 00:23:15,402 THAT SCORING SYSTEM, NO CHANGES 660 00:23:15,402 --> 00:23:19,206 TO HOW PERCENTILING IS MANAGED. 661 00:23:19,206 --> 00:23:21,408 THERE WILL BE ONLY TWO FACTOR 662 00:23:21,408 --> 00:23:22,976 SCORES, SO RIGHT NOW THERE ARE 663 00:23:22,976 --> 00:23:23,910 FIVE CRITERION SCORES. 664 00:23:23,910 --> 00:23:26,313 THERE WILL BE TWO FACTOR SCORES. 665 00:23:26,313 --> 00:23:28,081 THESE AGAIN ARE -- THEY'RE 666 00:23:28,081 --> 00:23:31,451 ALMOST CONSIDERED INFORMATIONAL, 667 00:23:31,451 --> 00:23:32,452 REALLY. 668 00:23:32,452 --> 00:23:33,887 AND THEN THE THIRD FACTOR AS I 669 00:23:33,887 --> 00:23:36,056 MENTIONED WILL NOT BE GETTING A 670 00:23:36,056 --> 00:23:36,490 SCORE. 671 00:23:36,490 --> 00:23:38,124 THAT'S THE EXPERTISE AND 672 00:23:38,124 --> 00:23:40,093 RESOURCES, THAT WILL JUST BE 673 00:23:40,093 --> 00:23:43,830 DEEMED ACCEPTABLE. 674 00:23:43,830 --> 00:23:44,598 OR APPROPRIATE OR GAPS 675 00:23:44,598 --> 00:23:45,699 IDENTIFIED. 676 00:23:45,699 --> 00:23:46,233 >> OKAY. 677 00:23:46,233 --> 00:23:47,667 THANK YOU. 678 00:23:47,667 --> 00:23:51,605 >> GOOD MORNING. 679 00:23:51,605 --> 00:23:53,540 THAT SAME SLIDE, THAT SAME 680 00:23:53,540 --> 00:23:55,108 TOPIC, IT HAD CROSSED OUT 681 00:23:55,108 --> 00:23:56,843 INCLUSION OF WOMEN, MINORITIES. 682 00:23:56,843 --> 00:23:58,278 COULD YOU ELABORATE ON THAT A 683 00:23:58,278 --> 00:24:00,146 BIT MORE, PLEASE? 684 00:24:00,146 --> 00:24:03,316 >> YEAH. 685 00:24:03,316 --> 00:24:05,285 SO IT'S CROSSED OUT IN THE 686 00:24:05,285 --> 00:24:06,086 ADDITIONAL REVIEW CRITERIA 687 00:24:06,086 --> 00:24:07,921 BECAUSE IT MOVED UP INTO FACTOR 688 00:24:07,921 --> 00:24:10,290 TWO. 689 00:24:10,290 --> 00:24:13,393 SO WHAT WAS HAPPENING BEFORE IS 690 00:24:13,393 --> 00:24:14,895 THAT THE DESCRIPTION OF THE 691 00:24:14,895 --> 00:24:19,132 CURRENT APPROACH INCLUDES 692 00:24:19,132 --> 00:24:20,700 CONSIDERATION OF STUDY 693 00:24:20,700 --> 00:24:22,135 POPULATION IS CLEARLY IMPORTANT, 694 00:24:22,135 --> 00:24:23,537 AND THEN WHAT WOULD HAPPEN IS 695 00:24:23,537 --> 00:24:25,305 THAT IT WOULD COME UP AGAIN AS 696 00:24:25,305 --> 00:24:26,540 INCLUSIONS AND IT WAS CREATING 697 00:24:26,540 --> 00:24:28,575 KIND OF CONFUSION OF WHY WE'RE 698 00:24:28,575 --> 00:24:30,777 ASKING TWICE OR WHAT SHOULD BE 699 00:24:30,777 --> 00:24:31,878 CONSIDERED PART OF APPROACH AND 700 00:24:31,878 --> 00:24:33,380 WHAT SHOULD BE CONSIDERED IN 701 00:24:33,380 --> 00:24:35,382 THIS ADDITIONAL REVIEW CRITERIA, 702 00:24:35,382 --> 00:24:36,850 AND REALLY WE'RE TRYING TO GET 703 00:24:36,850 --> 00:24:38,318 AT ALL THE SAME THING SO WE JUST 704 00:24:38,318 --> 00:24:40,387 PUT THAT ALL TOGETHER UNDER OUR 705 00:24:40,387 --> 00:24:40,654 APPROACH. 706 00:24:40,654 --> 00:24:42,455 >> DOES THAT MEAN THAT THE 707 00:24:42,455 --> 00:24:44,024 SECTION IS -- THAT -- BECAUSE 708 00:24:44,024 --> 00:24:46,393 THERE WAS A SEPARATE SECTION FOR 709 00:24:46,393 --> 00:24:49,462 DESCRIBING YOUR 710 00:24:49,462 --> 00:24:50,230 INCLUSION/EXCLUSION, I MEAN THAT 711 00:24:50,230 --> 00:24:51,531 WOMEN AND MINORITIES, ARE THOSE 712 00:24:51,531 --> 00:24:54,167 SECTIONS STAYING OR THEY'RE NOW 713 00:24:54,167 --> 00:24:55,368 GOING AWAY AND SHOWING UP 714 00:24:55,368 --> 00:24:57,504 SOMEWHERE ELSE? 715 00:24:57,504 --> 00:24:58,438 >> THEY'RE STILL IN THE 716 00:24:58,438 --> 00:24:59,539 APPLICATION. 717 00:24:59,539 --> 00:25:01,274 SO THAT HAS NOT CHANGED. 718 00:25:01,274 --> 00:25:04,678 AND THERE WILL STILL BE KIND OF 719 00:25:04,678 --> 00:25:06,313 UNDER FACTOR TWO, IN ADDITION TO 720 00:25:06,313 --> 00:25:08,181 THE COMMENTS, THERE WILL BE THE 721 00:25:08,181 --> 00:25:09,583 SAME WAY THAT REVIEWERS CAN KIND 722 00:25:09,583 --> 00:25:13,086 OF SAY YES, IT'S JUSTIFIED 723 00:25:13,086 --> 00:25:13,653 APPROPRIATELY OR I CAN'T 724 00:25:13,653 --> 00:25:15,388 REMEMBER THE EXACT PHRASING, BUT 725 00:25:15,388 --> 00:25:17,891 THAT BOX WILL STILL BE THERE. 726 00:25:17,891 --> 00:25:18,391 IT'S JUST -- 727 00:25:18,391 --> 00:25:19,659 >> SO YOU'LL STILL HAVE A 728 00:25:19,659 --> 00:25:20,293 SEPARATE SECTION, ARE YOU DON'T 729 00:25:20,293 --> 00:25:22,162 HAVE TO ROLL IT INTO YOUR 730 00:25:22,162 --> 00:25:22,495 APPROACH? 731 00:25:22,495 --> 00:25:23,263 >> YES. 732 00:25:23,263 --> 00:25:24,464 YEP, YEP. 733 00:25:24,464 --> 00:25:25,999 YEP, THAT IS ALL STAYING THE 734 00:25:25,999 --> 00:25:29,502 SAME IN TERMS OF HOW IT'S BEING 735 00:25:29,502 --> 00:25:30,070 INCORPORATED INTO THE 736 00:25:30,070 --> 00:25:30,470 APPLICATION. 737 00:25:30,470 --> 00:25:33,440 AND LIKE I SAID, IT'S JUST 738 00:25:33,440 --> 00:25:34,341 MOVING, SO THE CONSIDERATION IS 739 00:25:34,341 --> 00:25:35,642 THE SAME, NOTHING HAS CHANGED 740 00:25:35,642 --> 00:25:36,042 ABOUT THAT. 741 00:25:36,042 --> 00:25:37,277 WE'RE JUST TRYING TO MAKE IT 742 00:25:37,277 --> 00:25:38,578 LESS CONFUSING, NOT TALKING 743 00:25:38,578 --> 00:25:40,046 ABOUT IT TWO DIFFERENT TIMES IN 744 00:25:40,046 --> 00:25:42,649 TWO DIFFERENT PLACES. 745 00:25:42,649 --> 00:25:44,184 >> -- EMPOWERED BECAUSE IT'S 746 00:25:44,184 --> 00:25:45,919 PART OF A SCORE NOW RATHER THAN 747 00:25:45,919 --> 00:25:47,020 SATISFACTORY OR UNSATISFACTORY. 748 00:25:47,020 --> 00:25:47,954 >> YOU KNOW, IT WAS ALWAYS PART 749 00:25:47,954 --> 00:25:49,623 OF THE SCORE, BUT THAT'S PART OF 750 00:25:49,623 --> 00:25:50,624 THE CONFUSION, RIGHT? 751 00:25:50,624 --> 00:25:52,359 IS THAT PUTTING IT AT THE END 752 00:25:52,359 --> 00:25:55,528 MADE IT SEEM LIKE, WAIT, THIS IS 753 00:25:55,528 --> 00:25:56,963 DIFFERENT, IS THIS -- SHOULD 754 00:25:56,963 --> 00:25:59,132 THIS ONLY BE CONSIDERED HERE, 755 00:25:59,132 --> 00:26:00,467 SOME REVIEWERS WOULD JUST KIND 756 00:26:00,467 --> 00:26:02,102 OF CONSIDER IT MORE 757 00:26:02,102 --> 00:26:02,736 ADMINISTRATIVELY, OTHERS WOULD 758 00:26:02,736 --> 00:26:04,404 DO IT BOTH. 759 00:26:04,404 --> 00:26:06,206 I HEAR MANY TIMES PEOPLE WOULD 760 00:26:06,206 --> 00:26:07,240 TALK ABOUT THEY HAVE NOT 761 00:26:07,240 --> 00:26:08,975 INCLUDED THE RIGHT STUDY 762 00:26:08,975 --> 00:26:09,843 POPULATION, THEY'RE MISSING THIS 763 00:26:09,843 --> 00:26:11,244 GROUP OR THIS GROUP, AND THEN 764 00:26:11,244 --> 00:26:12,479 THEY'D GET DOWN AND SAY 765 00:26:12,479 --> 00:26:15,115 INCLUSIONS ARE FINE. 766 00:26:15,115 --> 00:26:16,316 SO THERE'S SOME CONFUSION THERE 767 00:26:16,316 --> 00:26:17,817 TOO, SO TRYING TO SOLVE ALL 768 00:26:17,817 --> 00:26:18,885 THOSE PROBLEMS. 769 00:26:18,885 --> 00:26:23,023 >> CAN I JUST FOLLOW UP WITH ONE 770 00:26:23,023 --> 00:26:24,524 MORE QUESTION, ACTUALLY TWO. 771 00:26:24,524 --> 00:26:24,824 >> SURE. 772 00:26:24,824 --> 00:26:28,328 >> ONE IS, THE DATA MANAGEMENT, 773 00:26:28,328 --> 00:26:29,863 I KNOW THERE WAS A CHANGE IN 774 00:26:29,863 --> 00:26:32,832 TERMS OF DATA MANAGEMENT, 775 00:26:32,832 --> 00:26:33,933 SAFETY, AND IT'S STILL ACTUALLY 776 00:26:33,933 --> 00:26:35,335 A LITTLE CONFUSING BECAUSE THERE 777 00:26:35,335 --> 00:26:36,970 WAS A RESOURCE PAGE AND NOW 778 00:26:36,970 --> 00:26:40,907 THERE IS ALSO A DATA -- IT 779 00:26:40,907 --> 00:26:42,876 WASN'T DATA SHARING. 780 00:26:42,876 --> 00:26:44,744 HOW DOES THAT GET EVALUATED? 781 00:26:44,744 --> 00:26:47,714 BECAUSE I'VE SEEN -- THERE IS NO 782 00:26:47,714 --> 00:26:51,518 CLEAR PLACE THAT THAT'S BEING 783 00:26:51,518 --> 00:26:52,852 EVALUATED, BUT YOU GET A DING 784 00:26:52,852 --> 00:26:53,953 FOR IT WHERE PEOPLE ARE GOING 785 00:26:53,953 --> 00:26:55,689 TO, YOU'RE NOT SHARING YOUR 786 00:26:55,689 --> 00:26:58,425 DATA, BUT WHERE DOES THAT FALL 787 00:26:58,425 --> 00:26:59,859 UNDER IN NEW CRITERIA? 788 00:26:59,859 --> 00:27:00,827 BECAUSE IT'S ALREADY CREATED A 789 00:27:00,827 --> 00:27:02,195 LITTLE BIT OF A WEIRD -- 790 00:27:02,195 --> 00:27:06,633 >> IT HAS AND WE'RE HOPING THIS 791 00:27:06,633 --> 00:27:09,135 HELPS CLARIFY THAT AGAIN EVEN 792 00:27:09,135 --> 00:27:10,203 FURTHER, SO IT IS NOT PART OF 793 00:27:10,203 --> 00:27:13,406 THE REVIEW CRITERIA NOW. 794 00:27:13,406 --> 00:27:15,208 THE DATA SHARING AND RESOURCES 795 00:27:15,208 --> 00:27:16,042 IS PULLED OUT. 796 00:27:16,042 --> 00:27:19,279 THERE'S A COUPLE OF EXCEPTIONS, 797 00:27:19,279 --> 00:27:21,181 SO IT GETS A LITTLE CONFUSING TO 798 00:27:21,181 --> 00:27:24,117 TALK ABOUT, BUT IN GENERAL, IT 799 00:27:24,117 --> 00:27:25,652 IS NOT PART OF THE REVIEW 800 00:27:25,652 --> 00:27:27,520 CONSIDERATIONS RIGHT NOW. 801 00:27:27,520 --> 00:27:28,288 IT'S SOMETHING THE PROGRAM 802 00:27:28,288 --> 00:27:30,690 ASSESSES AS WE MOVE FORWARD. 803 00:27:30,690 --> 00:27:32,792 THAT WILL BECOME EVEN CLEARER. 804 00:27:32,792 --> 00:27:38,264 SO WE REALLY TRIED TO STRIP OUT 805 00:27:38,264 --> 00:27:42,202 FACTORS THAT HAVE A HEAVY POLICY 806 00:27:42,202 --> 00:27:44,938 DEFINITION OR CONSIDERATIONS 807 00:27:44,938 --> 00:27:46,806 WHERE PROGRAM CAN DO A BETTER 808 00:27:46,806 --> 00:27:49,109 ASSESSMENT OF IT THAN REVIEWERS. 809 00:27:49,109 --> 00:27:50,510 I MEAN, REVIEWERS KNOW THE 810 00:27:50,510 --> 00:27:52,045 SCIENCE BEHIND IT BUT THEY DON'T 811 00:27:52,045 --> 00:27:52,679 NECESSARILY KNOW WHAT THEY'RE 812 00:27:52,679 --> 00:27:53,913 SUPPOSED TO BE LOOKING AT WITH 813 00:27:53,913 --> 00:27:54,948 SOME OF THESE CONSIDERATIONS. 814 00:27:54,948 --> 00:27:56,516 >> IF I COULD JUST ASK YOU, THE 815 00:27:56,516 --> 00:27:58,251 DATA MANAGEMENT AND SHARING 816 00:27:58,251 --> 00:28:00,353 PLANS, WHICH SOUNDS A LOT LIKE 817 00:28:00,353 --> 00:28:03,123 DSMBs BUT THOSE ARE SEPARATE, 818 00:28:03,123 --> 00:28:04,190 DATA MANAGEMENT SHARING PLANS 819 00:28:04,190 --> 00:28:05,625 ARE REVIEWED BY PROGRAM AND 820 00:28:05,625 --> 00:28:08,027 REVIEWERS ACTUALLY DON'T EVEN 821 00:28:08,027 --> 00:28:09,462 SEE THEM IN THE APPLICATION. 822 00:28:09,462 --> 00:28:11,965 THEY ONLY JUDGE WHETHER THERE IS 823 00:28:11,965 --> 00:28:13,032 A BUDGET APPROPRIATE. 824 00:28:13,032 --> 00:28:16,236 DON'T ASK ME HOW, BUT -- SO 825 00:28:16,236 --> 00:28:18,738 REVIEWERS ARE NOT SEEING THOSE 826 00:28:18,738 --> 00:28:21,241 AND YOU'LL BE WORKING WITH 827 00:28:21,241 --> 00:28:23,777 PROGRAM ON ANY UPDATES THAT THEY 828 00:28:23,777 --> 00:28:30,450 MAY NEED AFTER REVIEW. 829 00:28:30,450 --> 00:28:32,385 >> DO THE REVIEWERS SEE THE 830 00:28:32,385 --> 00:28:33,286 RESOURCE PLANS? 831 00:28:33,286 --> 00:28:37,223 >> RESOURCE SHARING IS DIFFERENT 832 00:28:37,223 --> 00:28:37,891 THAN DATA MANAGEMENT AND 833 00:28:37,891 --> 00:28:38,224 SHARING. 834 00:28:38,224 --> 00:28:41,494 SO IF YOU'RE DEVELOPING A NEW 835 00:28:41,494 --> 00:28:44,664 MOUSE MODEL, THAT WOULD BE A 836 00:28:44,664 --> 00:28:45,632 RESOURCE THAT YOU WOULD THEN 837 00:28:45,632 --> 00:28:49,135 HAVE TO TALK ABOUT HOW YOU'RE 838 00:28:49,135 --> 00:28:53,740 SHARING, THAT'S WHERE THAT 500K 839 00:28:53,740 --> 00:28:55,175 LIMIT OR BUDGET COMES IN. 840 00:28:55,175 --> 00:28:57,143 SO SOME NOFOs STILL HAVE 841 00:28:57,143 --> 00:28:59,212 RESOURCE SHARING, BUT IN 842 00:28:59,212 --> 00:29:00,613 GENERAL, IT'S NOT IN ALL 843 00:29:00,613 --> 00:29:03,283 APPLICATIONS. 844 00:29:03,283 --> 00:29:04,784 >> MY LAST QUESTION IS AROUND 845 00:29:04,784 --> 00:29:05,218 TRAINING. 846 00:29:05,218 --> 00:29:07,520 I NOTICE THAT THE CAREER 847 00:29:07,520 --> 00:29:08,822 DEVELOPMENT AND THE TRAINING 848 00:29:08,822 --> 00:29:10,824 AWARDS WERE NOT IN YOUR LIST. 849 00:29:10,824 --> 00:29:13,960 ARE THEY ALSO BEING EVALUATED OR 850 00:29:13,960 --> 00:29:15,528 CHANGED IN TERMS OF THE REVIEW? 851 00:29:15,528 --> 00:29:17,263 >> YOU ARE TOTALLY SETTING ME UP 852 00:29:17,263 --> 00:29:18,698 TO GO BACK TO MY LAST FEW SLIDES 853 00:29:18,698 --> 00:29:20,099 AND THEN WE CAN OPEN BACK UP FOR 854 00:29:20,099 --> 00:29:27,674 QUESTIONS. 855 00:29:27,674 --> 00:29:32,579 I'LL GET BACK TO WHERE WE WERE. 856 00:29:32,579 --> 00:29:35,215 THERE IS A SIMULTANEOUS OR 857 00:29:35,215 --> 00:29:38,384 CONCURRENT CHANGE THAT IS 858 00:29:38,384 --> 00:29:40,019 HAPPENING FOR FELLOWSHIP 859 00:29:40,019 --> 00:29:40,687 APPLICATIONS. 860 00:29:40,687 --> 00:29:44,490 SAME TIMING. 861 00:29:44,490 --> 00:29:45,825 AND SOME SIMILARITIES, BUT IT'S 862 00:29:45,825 --> 00:29:50,363 ACTUALLY A COMPLETELY DIFFERENT 863 00:29:50,363 --> 00:29:51,931 PROJECT THAT'S NOT PART OF 864 00:29:51,931 --> 00:29:52,699 SIMPLIFIED REVIEW FRAMEWORK. 865 00:29:52,699 --> 00:29:53,900 SO WHAT ARE THE CHANGES COMING 866 00:29:53,900 --> 00:29:55,435 TO THE FELLOWSHIP APPLICATION 867 00:29:55,435 --> 00:29:57,737 AND REVIEW CRITERIA? 868 00:29:57,737 --> 00:29:59,606 SO AGAIN, KIND OF A SIMILAR 869 00:29:59,606 --> 00:30:01,808 PROCESS AND SIMILAR GOALS, 870 00:30:01,808 --> 00:30:03,676 RESPONDING TO A LOT OF FEEDBACK 871 00:30:03,676 --> 00:30:04,744 FROM THE COMMUNITY ABOUT THE 872 00:30:04,744 --> 00:30:06,045 REVIEW OF FELLOWSHIPS AND 873 00:30:06,045 --> 00:30:07,580 WHETHER THE FELLOWSHIPS WERE 874 00:30:07,580 --> 00:30:08,681 EVEN -- THE APPLICATIONS WERE 875 00:30:08,681 --> 00:30:11,851 EVEN GETTING THE RIGHT 876 00:30:11,851 --> 00:30:12,986 INFORMATION TO BE EVALUATED 877 00:30:12,986 --> 00:30:13,586 RIGHT NOW. 878 00:30:13,586 --> 00:30:17,757 SO VERY COMPREHENSIVE REVIEW 879 00:30:17,757 --> 00:30:20,360 ACROSS NIH ABOUT WHAT WE WANTED 880 00:30:20,360 --> 00:30:22,462 THE FELLOWSHIP PROGRAM TO BE AND 881 00:30:22,462 --> 00:30:24,864 HOW TO BEST ALIGN THE 882 00:30:24,864 --> 00:30:26,499 APPLICATION AND THE REVIEW 883 00:30:26,499 --> 00:30:27,166 CONSIDERATIONS TO ACHIEVE THAT. 884 00:30:27,166 --> 00:30:29,302 SO THE BIG CHANGES COMING FOR 885 00:30:29,302 --> 00:30:32,205 THE FELLOWSHIP APPLICATIONS AND 886 00:30:32,205 --> 00:30:33,172 REVIEW, SO THERE ARE SOME 887 00:30:33,172 --> 00:30:35,041 CHANGES TO THE APPLICATIONS WITH 888 00:30:35,041 --> 00:30:38,645 FELLOWSHIPS, I WANT TO NOTE THAT 889 00:30:38,645 --> 00:30:39,379 DIFFERENCE. 890 00:30:39,379 --> 00:30:41,047 AGAIN, TO BETTER FOCUS THE 891 00:30:41,047 --> 00:30:45,652 REVIEWER ATTENTION ON THREE KEY 892 00:30:45,652 --> 00:30:46,085 ASSESSMENTS. 893 00:30:46,085 --> 00:30:47,387 I'LL HIT THOSE IN THE NEXT SLIDE 894 00:30:47,387 --> 00:30:50,790 BUT THEY'RE LISTED HERE AS WELL. 895 00:30:50,790 --> 00:30:51,991 TO ENSURE THAT THE BROAD RANGE 896 00:30:51,991 --> 00:30:53,192 OF CANDIDATES AND RESEARCH 897 00:30:53,192 --> 00:30:54,494 TRAINING CONTEXTS WILL BE 898 00:30:54,494 --> 00:30:55,595 CONSIDERED, REALLY BROADENING 899 00:30:55,595 --> 00:30:58,231 THE POOL OF WHAT IS AN 900 00:30:58,231 --> 00:30:59,632 APPROPRIATE FELLOWSHIP. 901 00:30:59,632 --> 00:31:00,633 THERE WERE SOME KIND OF 902 00:31:00,633 --> 00:31:02,602 ASSUMPTIONS BEING MADE ALONG THE 903 00:31:02,602 --> 00:31:06,639 WAY THAT ASSUMED -- THE RESEARCH 904 00:31:06,639 --> 00:31:08,107 FIELD HAS CHANGED AND RESEARCH 905 00:31:08,107 --> 00:31:09,275 TRAINING INVOLVES A WHOLE LOT OF 906 00:31:09,275 --> 00:31:10,143 PLACES AND TYPES OF ACTIVITIES 907 00:31:10,143 --> 00:31:11,144 AND WE WANT TO MAKE SURE THE 908 00:31:11,144 --> 00:31:12,979 FULL RANGE OF THOSE ARE PART 909 00:31:12,979 --> 00:31:15,715 OF -- WITHIN THE SCOPE, AND THEN 910 00:31:15,715 --> 00:31:16,816 AGAIN MAKING SURE THAT 911 00:31:16,816 --> 00:31:17,684 CANDIDATES ARE BEING CONSIDERED 912 00:31:17,684 --> 00:31:19,319 ON THEIR OWN MERITS, NOT THE 913 00:31:19,319 --> 00:31:21,421 MERITS OF THEIR SPONSOR, NOT THE 914 00:31:21,421 --> 00:31:24,357 MERITS OF THE INSTITUTION OF 915 00:31:24,357 --> 00:31:25,692 WHERE THEY'RE COMING FROM OR 916 00:31:25,692 --> 00:31:29,395 APPLYING TO. 917 00:31:29,395 --> 00:31:30,930 MORE INFORMATION IS AVAILABLE AT 918 00:31:30,930 --> 00:31:31,898 THE GUIDE NOTICE AND THEN THE 919 00:31:31,898 --> 00:31:33,466 LINKS THAT I HAVE COMING UP IN A 920 00:31:33,466 --> 00:31:34,000 SECOND. 921 00:31:34,000 --> 00:31:40,540 THIS IS JUST KIND OF AGAIN THE 922 00:31:40,540 --> 00:31:41,307 OVERALL SCREENSHOT OF WHAT WILL 923 00:31:41,307 --> 00:31:43,943 BE CHANGING IN THE REVIEW TIER 924 00:31:43,943 --> 00:31:49,849 REVIEWCRITERIA. 925 00:31:49,849 --> 00:31:51,184 THE CANDIDATE PREPAREDNESS AND 926 00:31:51,184 --> 00:31:53,252 POTENTIAL, PULLING THEM OFF 927 00:31:53,252 --> 00:31:55,188 GRADES, PULLING THEM OFF OF SOME 928 00:31:55,188 --> 00:31:56,189 OF THE REALLY KIND OF WHAT 929 00:31:56,189 --> 00:31:58,591 LOOKED TO BE EASY INDICATORS AND 930 00:31:58,591 --> 00:32:00,360 REALLY NOT GOOD INDICATORS OF 931 00:32:00,360 --> 00:32:02,628 ALL KIND OF THAT FUTURE 932 00:32:02,628 --> 00:32:03,529 POTENTIAL PREPAREDNESS. 933 00:32:03,529 --> 00:32:06,265 SO REALLY TRYING TO HELP BOTH 934 00:32:06,265 --> 00:32:07,567 APPLICANTS IN WRITING THEIR 935 00:32:07,567 --> 00:32:08,434 APPLICATIONS AND REVIEWERS THINK 936 00:32:08,434 --> 00:32:09,402 FORWARD, WHERE ARE THEY GOING 937 00:32:09,402 --> 00:32:10,970 WITH THIS, WHAT ARE THEY 938 00:32:10,970 --> 00:32:11,938 PROPOSING TO DO AND HOW WILL 939 00:32:11,938 --> 00:32:14,140 THAT HELP THEM DEVELOP A 940 00:32:14,140 --> 00:32:15,775 RESEARCH CAREER VERSUS WHAT HAVE 941 00:32:15,775 --> 00:32:20,046 THEY PROVEN IN THE PAST. 942 00:32:20,046 --> 00:32:23,316 LESS EMPHASIS ON THE PAST, MORE 943 00:32:23,316 --> 00:32:25,184 ON THE FUTURE. 944 00:32:25,184 --> 00:32:26,052 IT STILL INVOLVES THE SAME 945 00:32:26,052 --> 00:32:27,920 RESEARCH TRAINING PLAN, WHICH IS 946 00:32:27,920 --> 00:32:28,988 A SIGNIFICANT COMPONENT OF THE 947 00:32:28,988 --> 00:32:29,756 APPLICATION, WHAT ARE YOU 948 00:32:29,756 --> 00:32:30,990 PROPOSING TO DO IN TERMS OF 949 00:32:30,990 --> 00:32:33,593 COURSE WORK ACTIVITIES AND AN 950 00:32:33,593 --> 00:32:34,794 ACTUAL RESEARCH PROJECT TO 951 00:32:34,794 --> 00:32:37,797 ADVANCE. 952 00:32:37,797 --> 00:32:39,432 OR TO FORM THE 953 00:32:39,432 --> 00:32:40,633 FELLOWSHIP, AND THEN COMMITMENT 954 00:32:40,633 --> 00:32:44,137 TO THE CANDIDATE IS THE THIRD 955 00:32:44,137 --> 00:32:46,539 MAIN CONSIDERATION, INCLUDING 956 00:32:46,539 --> 00:32:50,910 THE -- SO THIS IS -- AND THIS IS 957 00:32:50,910 --> 00:32:52,045 WHERE THE BULK OF THE 958 00:32:52,045 --> 00:32:53,579 APPLICATION HAS CHANGED, REALLY 959 00:32:53,579 --> 00:32:54,981 BEING VERY CLEAR IN THE 960 00:32:54,981 --> 00:32:56,015 APPLICATION, WHICH SECTIONS 961 00:32:56,015 --> 00:32:57,617 SHOULD BE FILLED UP, THE SPONSOR 962 00:32:57,617 --> 00:32:59,752 VERSUS THE APPLICANT, SO THAT 963 00:32:59,752 --> 00:33:02,688 THERE'S MORE CLARITY OF WHO'S 964 00:33:02,688 --> 00:33:03,556 WRITING WHAT AND WHAT 965 00:33:03,556 --> 00:33:06,359 INFORMATION IS COMING FROM THE 966 00:33:06,359 --> 00:33:11,464 CANDIDATE VERSUS THE SPONSOR, 967 00:33:11,464 --> 00:33:14,600 AND A CLEAR STATEMENT AND PRETTY 968 00:33:14,600 --> 00:33:19,839 STRUCTURED AND FORMATTED, FORMS 969 00:33:19,839 --> 00:33:21,474 AND INSTRUCTIONS SO MATERIALS 970 00:33:21,474 --> 00:33:22,809 WERE GETTING TO LOOK MORE 971 00:33:22,809 --> 00:33:23,976 SIMILAR ACROSS APPLICATIONS AS 972 00:33:23,976 --> 00:33:24,877 OPPOSED TO SOME OF THE 973 00:33:24,877 --> 00:33:27,780 DIFFERENCES WE SEE. 974 00:33:27,780 --> 00:33:31,150 SO AS I MENTIONED, THAT IS WHERE 975 00:33:31,150 --> 00:33:32,418 THE CHANGES TO THE FELLOWSHIP 976 00:33:32,418 --> 00:33:35,188 APPLICATION COME IN, SO THE 977 00:33:35,188 --> 00:33:37,890 APPLICATION HAS BEEN REVISED TO 978 00:33:37,890 --> 00:33:40,760 VERY MUCH ALIGN WITH REVIEW 979 00:33:40,760 --> 00:33:41,427 CONSIDERATIONS SO THAT IT'S 980 00:33:41,427 --> 00:33:44,263 CLEAR WHAT YOU NEED -- THE 981 00:33:44,263 --> 00:33:45,264 INFORMATION THAT NEEDS TO BE 982 00:33:45,264 --> 00:33:45,998 PROVIDED AS WELL AS HOW THOSE 983 00:33:45,998 --> 00:33:47,333 WILL BE ASSESSED. 984 00:33:47,333 --> 00:33:52,138 GRADES ARE NOT REQUIRED OR 985 00:33:52,138 --> 00:33:52,572 ALLOWED. 986 00:33:52,572 --> 00:33:55,174 AND AS MENTIONED, A SHORTER, 987 00:33:55,174 --> 00:33:57,276 MORE STRUCTURED LANGUAGE IN 988 00:33:57,276 --> 00:33:59,212 ORDER TO PROVIDE CLARITY AS WELL 989 00:33:59,212 --> 00:34:04,817 AS GET MORE CONSISTENCY. 990 00:34:04,817 --> 00:34:08,421 FOSH BOTH RPGs AND Fs, THE 991 00:34:08,421 --> 00:34:09,322 TIMELINE IS THE SAME. 992 00:34:09,322 --> 00:34:13,893 SO ALL APPLICATIONS WITH JANUARO 993 00:34:13,893 --> 00:34:16,629 THERE'S A HANDFUL OF DUE DATES 994 00:34:16,629 --> 00:34:18,264 COMING IN BEFORE THEN, BUT NOT 995 00:34:18,264 --> 00:34:20,233 MANY, SO IT'S ALMOST EVERYTHING 996 00:34:20,233 --> 00:34:22,435 NOW IN THE FELLOWSHIP OR THE 997 00:34:22,435 --> 00:34:30,676 RPGs THAT WILL BE COMING IN. 998 00:34:30,676 --> 00:34:31,878 AND WE KNOW OUR COUNCIL AND 999 00:34:31,878 --> 00:34:33,179 REVIEW CYCLES AND ALL THAT IS A 1000 00:34:33,179 --> 00:34:38,851 LITTLE BIT CONFUSING, SO JANUARE 1001 00:34:38,851 --> 00:34:43,022 AND AFTER WILL BE THE SUMMER 1002 00:34:43,022 --> 00:34:47,727 REVIEWS AND OCTOBER COUNCIL. 1003 00:34:47,727 --> 00:34:50,897 HERE IS KIND OF THE TWO MAGIC 1004 00:34:50,897 --> 00:34:51,230 SLIDES. 1005 00:34:51,230 --> 00:34:53,833 OR THIS IS THE MAGIC SLIDE WITH 1006 00:34:53,833 --> 00:34:56,135 TWO CRITICAL LINKS, ACTUALLY YOU 1007 00:34:56,135 --> 00:34:58,337 CAN GET TO BOTH FROM THE SAME 1008 00:34:58,337 --> 00:34:59,772 OER LANDING PAGE. 1009 00:34:59,772 --> 00:35:01,741 IF YOU TAKE NOTHING ELSE AWAY, 1010 00:35:01,741 --> 00:35:03,709 THIS IS THE KEY SLIDE. 1011 00:35:03,709 --> 00:35:05,978 EVERYTHING I'VE PRESENTED TODAY, 1012 00:35:05,978 --> 00:35:10,249 YOU CAN FIND EITHER CURRENTLY OR 1013 00:35:10,249 --> 00:35:12,652 SOON, COMING SOON ON THIS -- ONE 1014 00:35:12,652 --> 00:35:13,653 OF THESE TWO SLIDES. 1015 00:35:13,653 --> 00:35:17,356 SO THERE'S ONE FOR THE RESEARCH 1016 00:35:17,356 --> 00:35:18,257 PROJECT GRANT. 1017 00:35:18,257 --> 00:35:22,061 IF YOU LOOK, IT KIND OF -- THE 1018 00:35:22,061 --> 00:35:25,498 LEFT-HAND SIDE OF THE SLIDE, YOU 1019 00:35:25,498 --> 00:35:26,999 SEE THERE'S A WHOLE SECTION, SO 1020 00:35:26,999 --> 00:35:29,101 UNDER SIMPLIFYING REVIEW PROJECT 1021 00:35:29,101 --> 00:35:30,403 GRANTS, THERE'S A SECTION ON 1022 00:35:30,403 --> 00:35:31,470 BACKGROUND, THERE'S A SECTION ON 1023 00:35:31,470 --> 00:35:33,139 THE HISTORY, THERE'S A SECTION 1024 00:35:33,139 --> 00:35:36,309 ON GUIDANCE FOR APPLICANTS, A 1025 00:35:36,309 --> 00:35:38,177 SECTION ON GUIDANCE FOR 1026 00:35:38,177 --> 00:35:38,945 REVIEWERS, FREQUENTLY ASKED 1027 00:35:38,945 --> 00:35:40,246 QUESTIONS THAT ARE REGULARLY 1028 00:35:40,246 --> 00:35:41,581 UPDATED. 1029 00:35:41,581 --> 00:35:44,850 SO THIS IS REALLY KIND OF YOUR 1030 00:35:44,850 --> 00:35:46,719 ONE-STOP SHOP FOR RPGs AND 1031 00:35:46,719 --> 00:35:49,121 THEN ONE FOR FELLOWSHIPS THAT 1032 00:35:49,121 --> 00:35:54,827 SUMMARIZES EVERYTHING. 1033 00:35:54,827 --> 00:36:00,266 LET ME END ON A RELATED BUT JUST 1034 00:36:00,266 --> 00:36:01,534 KIND OF SLIGHTLY DIFFERENT 1035 00:36:01,534 --> 00:36:07,173 PUBLIC SERVICE ANNOUNCEMENT. 1036 00:36:07,173 --> 00:36:09,041 THESE CHANGES ARE JUST ONE OF 1037 00:36:09,041 --> 00:36:12,111 MANY THAT CSRs ENGAGED IN TO 1038 00:36:12,111 --> 00:36:16,582 PROMOTE THE HIGHEST QUALITY AND 1039 00:36:16,582 --> 00:36:17,350 FAIR REVIEW. 1040 00:36:17,350 --> 00:36:21,387 AND WE DO HAVE REPORT BIAS. 1041 00:36:21,387 --> 00:36:22,822 IT'S KINDS OF A MISNOMER BECAUSE 1042 00:36:22,822 --> 00:36:26,959 IT'S NOT JUST BIAS, IT'S ALSO 1043 00:36:26,959 --> 00:36:27,660 FAIRNESS. 1044 00:36:27,660 --> 00:36:32,131 FLAWS IN REVIEW, CONCERNS ABOUT 1045 00:36:32,131 --> 00:36:33,566 REALLY ANYTHING IN A KREE TEEK 1046 00:36:33,566 --> 00:36:37,503 CRITIQUE ORREVIEW PROCESS. 1047 00:36:37,503 --> 00:36:38,404 EVERY ALLEGATION THAT COMES TO 1048 00:36:38,404 --> 00:36:40,806 US THROUGH THIS BOX OR THROUGH 1049 00:36:40,806 --> 00:36:42,675 OTHER AVENUES, SOMEONE REACHES 1050 00:36:42,675 --> 00:36:45,411 DIRECTLY OUT TO ME OR TO AN SRO 1051 00:36:45,411 --> 00:36:46,712 OR SOMETHING, WE FOLLOW THE SAME 1052 00:36:46,712 --> 00:36:47,146 PROCESS. 1053 00:36:47,146 --> 00:36:51,417 WE DO LOOK AT EVERY ALLEGATION. 1054 00:36:51,417 --> 00:36:52,618 AND EVERY CONSIDERATION, AND IF 1055 00:36:52,618 --> 00:36:54,153 WE AGREE THAT THERE WAS BIAS OR 1056 00:36:54,153 --> 00:36:57,590 A FLAW IN THE REVIEW, WE WILL 1057 00:36:57,590 --> 00:37:00,626 RE-REVIEW THE APPLICATION WITH 1058 00:37:00,626 --> 00:37:02,061 THE LEAST POSSIBLE PENALTY TO 1059 00:37:02,061 --> 00:37:02,795 THE P.I. 1060 00:37:02,795 --> 00:37:04,563 SO WE TRY TO DO IT WITHIN THE 1061 00:37:04,563 --> 00:37:05,798 SAME COUNCIL ROUND SO THAT 1062 00:37:05,798 --> 00:37:09,068 THERE'S NO DELAY IN FUNDING AND 1063 00:37:09,068 --> 00:37:13,439 IF WE DON'T AGREE, WE'LL REFER 1064 00:37:13,439 --> 00:37:14,874 IT BACK, AND THE STANDARD 1065 00:37:14,874 --> 00:37:15,941 APPEALS PROCESS STILL APPLIES. 1066 00:37:15,941 --> 00:37:17,510 SO THIS IS KIND OF A PARALLEL 1067 00:37:17,510 --> 00:37:23,482 PROCESS TO THE APPEALS. 1068 00:37:23,482 --> 00:37:26,252 WE DO FOLLOW UP WITH REVIEWERS, 1069 00:37:26,252 --> 00:37:30,089 IF REVIEWERS MAKE INAPPROPRIATE 1070 00:37:30,089 --> 00:37:31,624 COMMENTS AND THAT'S THE CAUSE OF 1071 00:37:31,624 --> 00:37:36,762 THE BIAS OR THE FLAWS IN THE 1072 00:37:36,762 --> 00:37:38,164 REVIEW, WE WILL LET THEM KNOW. 1073 00:37:38,164 --> 00:37:40,032 AND WE HAVE SOME DIFFICULT 1074 00:37:40,032 --> 00:37:41,467 CONVERSATIONS AND WE HAVE SOME 1075 00:37:41,467 --> 00:37:50,042 CONSIDERATIONS AND HE THEY AND , 1076 00:37:50,042 --> 00:37:51,977 I DID NOT MEAN TO SAY THAT. 1077 00:37:51,977 --> 00:37:53,612 WE DO SIMILAR ACTIVITIES WITH 1078 00:37:53,612 --> 00:37:54,714 CRITIQUES AS THEY'RE COMING IN, 1079 00:37:54,714 --> 00:37:56,682 OUR SROs ARE ACTIVELY KIND OF 1080 00:37:56,682 --> 00:37:57,983 READING THOSE, REVIEWING THOSE 1081 00:37:57,983 --> 00:37:59,652 IF THEY SEE COMMENTS THAT 1082 00:37:59,652 --> 00:38:03,022 SUGGEST POTENTIAL BIAS OR JUST 1083 00:38:03,022 --> 00:38:04,790 KIND OF -- COMMENTS OUTSIDE THE 1084 00:38:04,790 --> 00:38:05,758 REVIEW CRITERIA, THEY ARE 1085 00:38:05,758 --> 00:38:07,059 REACHING OUT AND TRYING TO GET 1086 00:38:07,059 --> 00:38:11,230 CLARIFICATION ON THOSE AND WE DO 1087 00:38:11,230 --> 00:38:12,665 TAKE ACTION AS NEEDED. 1088 00:38:12,665 --> 00:38:16,669 SO WITH THAT, I CAN GO BACK IF 1089 00:38:16,669 --> 00:38:18,037 THERE ARE ANY REMAINING 1090 00:38:18,037 --> 00:38:18,904 QUESTIONS, HAPPY TO ANSWER. 1091 00:38:18,904 --> 00:38:20,139 >> MICHELLE. 1092 00:38:20,139 --> 00:38:22,074 >> I'M CURIOUS, SOMETHING YOU 1093 00:38:22,074 --> 00:38:25,277 SAID MADE ME THINK ABOUT 1094 00:38:25,277 --> 00:38:28,114 EXPERIENCES THAT I'VE HAD. 1095 00:38:28,114 --> 00:38:30,516 IN TERMS OF THE -- YOU SAID IF 1096 00:38:30,516 --> 00:38:31,283 SOMEONE WROTE SOMETHING KIND OF 1097 00:38:31,283 --> 00:38:35,020 THAT HIT YOU WRONG IN THEIR 1098 00:38:35,020 --> 00:38:36,222 REVIEW CRITIQUE. 1099 00:38:36,222 --> 00:38:38,190 YOU OFTEN DON'T KNOW IF THAT WAS 1100 00:38:38,190 --> 00:38:39,825 THEN EXPRESSED OUT LOUD DURING 1101 00:38:39,825 --> 00:38:42,128 THE DISCUSSION SECTION BECAUSE 1102 00:38:42,128 --> 00:38:44,830 THAT'S NOT ALWAYS MAYBE REPORTED 1103 00:38:44,830 --> 00:38:48,801 BY THE SRO OR THE PERSON 1104 00:38:48,801 --> 00:38:49,568 CHAIRING IT. 1105 00:38:49,568 --> 00:38:51,303 SO HOW DOES THAT GET ADDRESSED, 1106 00:38:51,303 --> 00:38:53,205 YOU KNOW, YOU REACH OUT TO THE 1107 00:38:53,205 --> 00:38:56,075 REVIEWER AND GO, OH, THIS WAS 1108 00:38:56,075 --> 00:39:02,281 INAPPROPRIATE, BUT THE IMPACT OF 1109 00:39:02,281 --> 00:39:03,616 IT HAS ALREADY AFFECTED THE 1110 00:39:03,616 --> 00:39:04,917 CANDIDATE, AND IT'S VERY HARD 1111 00:39:04,917 --> 00:39:06,152 FROM YOUR PERSPECTIVE TO 1112 00:39:06,152 --> 00:39:07,887 JUDGE -- TO RE-REVIEW BASED ON 1113 00:39:07,887 --> 00:39:10,055 THAT, UNLESS IT'S REALLY 1114 00:39:10,055 --> 00:39:13,092 EGREGIOUS, BUT YOU'RE NOT SURE 1115 00:39:13,092 --> 00:39:15,161 IF IT DID AFFECT THE PANEL? 1116 00:39:15,161 --> 00:39:16,595 SO I'VE SEEN THAT AND I'VE 1117 00:39:16,595 --> 00:39:17,696 EXPERIENCED THAT. 1118 00:39:17,696 --> 00:39:19,665 AND I JUST WONDER ABOUT THAT, 1119 00:39:19,665 --> 00:39:21,634 BECAUSE I DON'T KNOW IF THIS 1120 00:39:21,634 --> 00:39:27,006 PROCESS REALLY, YOU KNOW, 1121 00:39:27,006 --> 00:39:28,274 ALLEVIATES THE PAIN THAT THAT 1122 00:39:28,274 --> 00:39:29,909 WOULD HAVE ALREADY CAUSED. 1123 00:39:29,909 --> 00:39:35,114 >> SO WE CAN'T ALLEVIATE ALL 1124 00:39:35,114 --> 00:39:42,221 PAIN. 1125 00:39:42,221 --> 00:39:42,988 IT'S A GOOD QUESTION. 1126 00:39:42,988 --> 00:39:44,190 THERE'S A COUPLE THINGS I WANT 1127 00:39:44,190 --> 00:39:44,623 TO HIGHLIGHT. 1128 00:39:44,623 --> 00:39:47,593 ONE IS, THE CRITIQUES FROM THE 1129 00:39:47,593 --> 00:39:48,694 REVIEWERS ARE THE CRITIQUES FROM 1130 00:39:48,694 --> 00:39:52,731 THE REVIEWERS. 1131 00:39:52,731 --> 00:39:54,400 IT IS OUR PRACTICE TO NOT EDIT 1132 00:39:54,400 --> 00:39:58,771 THOSE, AND TO NOT TRY TO 1133 00:39:58,771 --> 00:40:03,676 INFLUENCE THOSE, AND SO WE WILL 1134 00:40:03,676 --> 00:40:04,910 RELEASE THEM. 1135 00:40:04,910 --> 00:40:06,412 AND LANGUAGE IS CHALLENGING, 1136 00:40:06,412 --> 00:40:08,280 LANGUAGE IS TRICKY ESPECIALLY 1137 00:40:08,280 --> 00:40:10,182 WHEN WE'RE TALKING ABOUT FAIRLY 1138 00:40:10,182 --> 00:40:11,250 BRIEF COMMENTS THAT HAPPEN IN 1139 00:40:11,250 --> 00:40:11,717 REVIEW. 1140 00:40:11,717 --> 00:40:12,451 WE'RE IN THE BUSINESS OF HAVING 1141 00:40:12,451 --> 00:40:13,552 TO TRY TO FIGURE OUT THE 1142 00:40:13,552 --> 00:40:17,957 MEANINGS. 1143 00:40:17,957 --> 00:40:21,660 SO BUT THERE ARE SOME COMMENTS 1144 00:40:21,660 --> 00:40:23,429 THAT IF THEY'RE IN A CRITIQUE, 1145 00:40:23,429 --> 00:40:25,397 WE CONSIDER TO HAVE INFLUENCED 1146 00:40:25,397 --> 00:40:27,166 THE REVIEW, PERIOD. 1147 00:40:27,166 --> 00:40:30,636 THIS IS -- IT'S KIND OF LONG 1148 00:40:30,636 --> 00:40:33,372 TERM CULTURE CHANGE. 1149 00:40:33,372 --> 00:40:34,540 I'LL REFER YOU BACK TO THAT 1150 00:40:34,540 --> 00:40:38,377 SLIDE AT THE BEGINNING OF THE 1151 00:40:38,377 --> 00:40:39,078 66,000 APPLICATIONS. 1152 00:40:39,078 --> 00:40:40,379 IT'S A LARGE SCALE OPERATION, 1153 00:40:40,379 --> 00:40:41,914 IT'S HARD TO CATCH EVERYTHING 1154 00:40:41,914 --> 00:40:43,115 EVEN WHEN WE'RE PAYING ATTENTION 1155 00:40:43,115 --> 00:40:45,217 TO IT. 1156 00:40:45,217 --> 00:40:46,218 AND YOU'RE GOING TO READ THE 1157 00:40:46,218 --> 00:40:46,986 COMMENTS DIFFERENTLY THAN WE 1158 00:40:46,986 --> 00:40:49,722 READ THE COMMENTS. 1159 00:40:49,722 --> 00:40:51,056 AND THAT'S ONE OF THE REASONS 1160 00:40:51,056 --> 00:40:52,157 WHY WE HAVE OPENED UP THE 1161 00:40:52,157 --> 00:40:53,392 REPORTING BOXES AND THINGS LIKE 1162 00:40:53,392 --> 00:40:55,160 THAT TO SAY HEY, YOU KNOW, WE 1163 00:40:55,160 --> 00:41:00,900 MAY HAVE MISSED IT. 1164 00:41:00,900 --> 00:41:03,335 SO YES, IF YOU'VE SEEN THESE IN 1165 00:41:03,335 --> 00:41:04,970 THE PAST, I STILL ENCOURAGE YOU 1166 00:41:04,970 --> 00:41:08,140 TO COME FORWARD. 1167 00:41:08,140 --> 00:41:09,575 IT'S AN ITERATIVE PROCESS AND IT 1168 00:41:09,575 --> 00:41:11,544 SOMETHING THAT WE DO CARE ABOUT, 1169 00:41:11,544 --> 00:41:13,512 AND AGAIN, KIND OF -- IT PLAYS 1170 00:41:13,512 --> 00:41:17,249 OUT DIFFERENTLY IN EVERY CASE. 1171 00:41:17,249 --> 00:41:19,218 WE DO -- IN SOME CASES, SOME OF 1172 00:41:19,218 --> 00:41:21,854 THE ISSUES IN CRITIQUES HAVE 1173 00:41:21,854 --> 00:41:22,922 BEEN RESOLVED IN DISCUSSION AND 1174 00:41:22,922 --> 00:41:24,790 THEY DON'T GET EDITED POST 1175 00:41:24,790 --> 00:41:25,124 DISCUSSION. 1176 00:41:25,124 --> 00:41:28,193 SO IT'S A LITTLE TRICKY, BUT IF 1177 00:41:28,193 --> 00:41:29,295 YOU SEE SOMETHING WE WANT TO 1178 00:41:29,295 --> 00:41:32,798 HEAR ABOUT IT AND WE HAVE 1179 00:41:32,798 --> 00:41:33,566 RE-REVIEWED MANY, MANY 1180 00:41:33,566 --> 00:41:34,333 APPLICATIONS EVEN AFTER RELEASE 1181 00:41:34,333 --> 00:41:37,836 OF SCORES AND SUMMARY 1182 00:41:37,836 --> 00:41:38,938 STATEMENTS, AT VARIOUS 1183 00:41:38,938 --> 00:41:40,039 PROCESSES, SO WE'VE PULLED THEM 1184 00:41:40,039 --> 00:41:41,140 RIGHT BEFORE THEY'VE ACTUALLY 1185 00:41:41,140 --> 00:41:42,207 GONE TO DISCUSSION, WE'VE PULLED 1186 00:41:42,207 --> 00:41:43,442 THEM AFTER DISCUSSION, BEFORE 1187 00:41:43,442 --> 00:41:44,443 SUMMARY STATEMENTS HAVE BEEN 1188 00:41:44,443 --> 00:41:46,512 RELEASED AND WE WILL ADDRESS 1189 00:41:46,512 --> 00:41:52,117 THEM ANY TIME WITHIN THE CYCLE. 1190 00:41:52,117 --> 00:41:56,689 BUT WE DO -- ESPECIALLY IF 1191 00:41:56,689 --> 00:41:58,290 THERE'S A COMMENT WHERE THERE IS 1192 00:41:58,290 --> 00:42:03,495 A CLEAR POTENTIAL FOR BIAS. 1193 00:42:03,495 --> 00:42:08,200 >> BOB? 1194 00:42:08,200 --> 00:42:10,836 >> I JUST WANT TO 1195 00:42:10,836 --> 00:42:11,470 UNCHARACTERISTICALLY PROVIDE 1196 00:42:11,470 --> 00:42:12,271 POSITIVE FEEDBACK. 1197 00:42:12,271 --> 00:42:13,238 THESE CHANGES ARE FANTASTIC. 1198 00:42:13,238 --> 00:42:17,209 I THINK THE CHANGES TO THE 1199 00:42:17,209 --> 00:42:18,510 RESEARCH AWARDS ARE REFLECTING 1200 00:42:18,510 --> 00:42:20,579 WHAT'S BEEN GOING ON, BUT IT'S 1201 00:42:20,579 --> 00:42:23,649 BEEN CONFUSING TO APPLICANTS 1202 00:42:23,649 --> 00:42:25,751 BECAUSE THE OVERALL SCORE ISN'T 1203 00:42:25,751 --> 00:42:26,952 OBVIOUSLY REFLECTED BY THE 1204 00:42:26,952 --> 00:42:27,586 INDIVIDUAL COMPONENTS, SO I 1205 00:42:27,586 --> 00:42:29,488 THINK THAT'S REALLY GREAT. 1206 00:42:29,488 --> 00:42:33,092 AND I THINK TAKING THE MENTOR 1207 00:42:33,092 --> 00:42:37,262 BIAS OUT OF THE -- THE MENTOR 1208 00:42:37,262 --> 00:42:38,030 INSTITUTION BIAS OUT OF THE 1209 00:42:38,030 --> 00:42:41,734 TRAINING AWARDS IS JUST REALLY 1210 00:42:41,734 --> 00:42:43,035 FREIGHT, SO THANK YOU. 1211 00:42:43,035 --> 00:42:44,470 AND TO EVERYBODY THAT WAS 1212 00:42:44,470 --> 00:42:47,339 INVOLVED IN THIS. 1213 00:42:47,339 --> 00:42:48,440 >> THANK YOU. 1214 00:42:48,440 --> 00:42:49,608 GREAT CHANGES. 1215 00:42:49,608 --> 00:42:52,378 GOING BACK TO MICHELLE'S 1216 00:42:52,378 --> 00:42:53,278 COMMENTS, I THINK IT'S GOING TO 1217 00:42:53,278 --> 00:42:56,215 BE UP TO THE REVIEWERS AND THE 1218 00:42:56,215 --> 00:43:01,687 SRO TO DETECT THOSE THINGS AND 1219 00:43:01,687 --> 00:43:03,255 TRY TO ADDRESS THEM RIGHT THERE 1220 00:43:03,255 --> 00:43:09,361 AND, YOU KNOW -- THE REVIEW, SO 1221 00:43:09,361 --> 00:43:11,664 WE NEED TO BE MORE CAREFUL AS WE 1222 00:43:11,664 --> 00:43:14,633 READ THEM. 1223 00:43:14,633 --> 00:43:16,835 MY OTHER COMMENT OR -- YOU KNOW, 1224 00:43:16,835 --> 00:43:18,570 IN TERMS OF DATA SHARING, SO 1225 00:43:18,570 --> 00:43:20,139 WHEN YOU ASK FOR A BUDGET FOR 1226 00:43:20,139 --> 00:43:23,609 THAT, BUT YOU DON'T SEE IT, IS 1227 00:43:23,609 --> 00:43:24,943 THAT WHAT IS HAPPENING HERE? 1228 00:43:24,943 --> 00:43:29,415 SO WE WOULD -- PEOPLE WITH NO 1229 00:43:29,415 --> 00:43:31,316 REVIEW BUDGET RELATE TO DATA 1230 00:43:31,316 --> 00:43:32,284 SHARING BECAUSE THEY DON'T GET 1231 00:43:32,284 --> 00:43:32,818 ACCESS TO THAT? 1232 00:43:32,818 --> 00:43:34,253 >> THE REVIEWERS COMMENT ON 1233 00:43:34,253 --> 00:43:36,255 WHETHER THE BUDGET IS ACCEPTABLE 1234 00:43:36,255 --> 00:43:36,755 FOR DATA MANAGEMENT. 1235 00:43:36,755 --> 00:43:37,322 >> OKAY. 1236 00:43:37,322 --> 00:43:39,892 >> SO IF YOU HAVE $0 COMMITTED 1237 00:43:39,892 --> 00:43:41,727 TO DATA SHARING AND MANAGEMENT, 1238 00:43:41,727 --> 00:43:43,362 MAYBE THAT'S NOT THE GOOD 1239 00:43:43,362 --> 00:43:44,129 NUMBER. 1240 00:43:44,129 --> 00:43:46,799 BUT YEAH, BUT IT'S A PROGRAM. 1241 00:43:46,799 --> 00:43:50,536 >> SO I HAVE SEEN THAT SOMETIME 1242 00:43:50,536 --> 00:43:52,905 THERE ARE SOME TEMPLATES FOR AN 1243 00:43:52,905 --> 00:43:53,172 ESTIMATE. 1244 00:43:53,172 --> 00:43:55,207 I THINK THAT WOULD BE GREAT TO 1245 00:43:55,207 --> 00:43:57,509 SORT OF HARMONIZE THIS ACROSS AT 1246 00:43:57,509 --> 00:43:58,610 LEAST TO START. 1247 00:43:58,610 --> 00:44:00,679 >> YES, THERE ARE RESOURCES AND 1248 00:44:00,679 --> 00:44:02,781 WE CAN SEND THEM TO YOU. 1249 00:44:02,781 --> 00:44:06,418 >> ONE LAST QUESTION. 1250 00:44:06,418 --> 00:44:08,153 >> SO I THINK -- I DON'T KNOW IF 1251 00:44:08,153 --> 00:44:11,890 I WAS READING -- I WAS READING 1252 00:44:11,890 --> 00:44:15,060 ONE OF THE NIH ADMIN STUFF THAT 1253 00:44:15,060 --> 00:44:16,161 CAME OUT OF MAYBE YOUR GROUP 1254 00:44:16,161 --> 00:44:17,796 THAT WAS TALKING ABOUT THE USE 1255 00:44:17,796 --> 00:44:23,268 OF A.I. TO SUPPORT ALL THESE 1256 00:44:23,268 --> 00:44:24,036 CHANGES IN THE MANAGEMENT OF 1257 00:44:24,036 --> 00:44:26,672 THESE APPLICATIONS. 1258 00:44:26,672 --> 00:44:28,107 SO IT HAS COME UP BEFORE BECAUSE 1259 00:44:28,107 --> 00:44:32,044 I THINK IT IS A GENERAL QUESTION 1260 00:44:32,044 --> 00:44:34,446 AS HOW -- IS IT ACCEPTABLE TO 1261 00:44:34,446 --> 00:44:38,717 USE A.I. FOR REVIEW OR NOT. 1262 00:44:38,717 --> 00:44:40,385 I HAVE PERSONALLY NOT BEEN 1263 00:44:40,385 --> 00:44:42,688 BECAUSE I KNOW THAT PUTTING 1264 00:44:42,688 --> 00:44:47,826 SOMEONE'S GRANT INTO A THING IS 1265 00:44:47,826 --> 00:44:49,361 NOT OKAY, BUT IT'S COMING UP AND 1266 00:44:49,361 --> 00:44:50,696 I WONDERED WHEN I READ THAT NOTE 1267 00:44:50,696 --> 00:44:53,298 ABOUT HOW NIH MIGHT BE FIGURING 1268 00:44:53,298 --> 00:44:57,035 OUT HOW TO USE ML TO THEIR 1269 00:44:57,035 --> 00:45:00,139 BENEFIT, THAT MADE ME THINK HOW 1270 00:45:00,139 --> 00:45:03,742 IS THIS WHOLE NATURAL LANGUAGE 1271 00:45:03,742 --> 00:45:04,510 PROCESSING/CHATGPT BEING MANAGED 1272 00:45:04,510 --> 00:45:06,178 IN TERMS OF WRITING AND 1273 00:45:06,178 --> 00:45:08,013 ORGANIZING YOUR THOUGHTS, YOUR 1274 00:45:08,013 --> 00:45:09,782 REVIEWS, ET CETERA, OR OUR 1275 00:45:09,782 --> 00:45:13,786 THOUGHTS, OUR REVIEWS? 1276 00:45:13,786 --> 00:45:15,187 >> YEAH, THAT'S A BIG QUESTION 1277 00:45:15,187 --> 00:45:16,522 SO I'LL JUST KIND OF HIT ON A 1278 00:45:16,522 --> 00:45:17,389 COUPLE THINGS. 1279 00:45:17,389 --> 00:45:21,326 ONE, NIH DOES HAVE A POLICY THAT 1280 00:45:21,326 --> 00:45:25,597 THEY'VE PUT OUT ON A.I. THAT 1281 00:45:25,597 --> 00:45:27,032 DOES VERY CLEARLY STATE THAT 1282 00:45:27,032 --> 00:45:30,669 REVIEWERS SHOULD NOT BE USING 1283 00:45:30,669 --> 00:45:32,104 A.I., STAFF REVIEWERS SHOULD NOT 1284 00:45:32,104 --> 00:45:35,707 BE USING A.I. WITH APPLICATIONS 1285 00:45:35,707 --> 00:45:39,244 FOR ANYTHING RELATED TO THOSE 1286 00:45:39,244 --> 00:45:41,413 ACTIVITIES BECAUSE OF THE 1287 00:45:41,413 --> 00:45:45,017 CONFIDENTIALITY AND THE 1288 00:45:45,017 --> 00:45:46,451 SCIENTIFIC KNOWLEDGE THAT IS 1289 00:45:46,451 --> 00:45:47,119 INCLUDED IN THEM. 1290 00:45:47,119 --> 00:45:48,687 THAT DOES NOT APPLY TO 1291 00:45:48,687 --> 00:45:50,322 APPLICATION WRITING. 1292 00:45:50,322 --> 00:45:53,492 AND IT ALSO DOES NOT APPLY OR -- 1293 00:45:53,492 --> 00:45:58,630 WE DO USE AUTOIMMUNE, WE'VE GOT 1294 00:45:58,630 --> 00:46:00,732 LARGE TEAMS, MULTIPLE I.T. TEAMS 1295 00:46:00,732 --> 00:46:04,002 WORKING ON DIFFERENT WAYS TO USE 1296 00:46:04,002 --> 00:46:07,539 THOSE TECHNOLOGIES FOR 1297 00:46:07,539 --> 00:46:08,740 EFFICIENCIES AND QUALITY AND A 1298 00:46:08,740 --> 00:46:13,779 RANGE OF OTHER THINGS, BUT 1299 00:46:13,779 --> 00:46:15,314 VERY -- WITH AGAIN KIND OF 1300 00:46:15,314 --> 00:46:16,715 FOLLOWING SOME PRETTY CAREFUL 1301 00:46:16,715 --> 00:46:22,020 POLICIES TO MAKE SURE THAT IT IS 1302 00:46:22,020 --> 00:46:23,355 ALL INTERNAL SYSTEMS. 1303 00:46:23,355 --> 00:46:24,923 AS YOU KNOW, IT'S A RAPIDLY 1304 00:46:24,923 --> 00:46:28,760 MOVING FIELD, AND SO IT IS 1305 00:46:28,760 --> 00:46:29,962 SOMETHING THAT WE ARE BOTH 1306 00:46:29,962 --> 00:46:34,099 TRYING TO USE FOR OUR OWN 1307 00:46:34,099 --> 00:46:36,535 PROCESSES AND BENEFIT AWARE OF 1308 00:46:36,535 --> 00:46:38,403 THE POTENTIAL USES IN THE 1309 00:46:38,403 --> 00:46:40,606 COMMUNITY AND TRYING TO NAVIGATE 1310 00:46:40,606 --> 00:46:41,807 THAT WHOLE SPACE AS IT MOVES 1311 00:46:41,807 --> 00:46:44,776 MORE QUICKLY. 1312 00:46:44,776 --> 00:46:48,080 ANYBODY CAN KEEP UP WITH. 1313 00:46:48,080 --> 00:46:53,452 BUT OER IS KIND OF THE MAJOR 1314 00:46:53,452 --> 00:46:57,923 ORGANIZATION WITHIN NIH THAT IS 1315 00:46:57,923 --> 00:46:59,057 GUIDING THAT EFFORT. 1316 00:46:59,057 --> 00:47:00,592 >> VALERIE, THANK YOU SO VERY 1317 00:47:00,592 --> 00:47:02,794 MUCH. 1318 00:47:02,794 --> 00:47:04,529 >> I WANT TO THANK VAL REA FOR 1319 00:47:04,529 --> 00:47:08,834 MVALERIE FORMAKING THE ROUNDS AE 1320 00:47:08,834 --> 00:47:10,569 SLINGS AND ARROWS, AND ALSO OF 1321 00:47:10,569 --> 00:47:11,703 COURSE YOUR DAY JOB ABOUT 1322 00:47:11,703 --> 00:47:13,338 LEADING A SECTION OF REVIEW AND 1323 00:47:13,338 --> 00:47:16,408 RUNNING YOUR OWN STUDY SECTIONS. 1324 00:47:16,408 --> 00:47:17,743 IT'S ALSO A GOOD CHANCE FOR ME 1325 00:47:17,743 --> 00:47:18,710 TO THANK EVERYBODY ELSE THAT 1326 00:47:18,710 --> 00:47:19,945 SERVED ON PEER REVIEW. 1327 00:47:19,945 --> 00:47:23,348 PART OF OUR JOB AS PROGRAM IS TO 1328 00:47:23,348 --> 00:47:24,650 LISTEN TO THE REVIEWS AND I'VE 1329 00:47:24,650 --> 00:47:26,919 ALWAYS BEEN VERY IMPRESSED ABOUT 1330 00:47:26,919 --> 00:47:28,253 HOW MUCH WORK PEOPLE PUT IN TO 1331 00:47:28,253 --> 00:47:30,989 THEIR REVIEWS AND HOW THE NIH 1332 00:47:30,989 --> 00:47:33,025 PEER REVIEW SYSTEM, PEOPLE 1333 00:47:33,025 --> 00:47:37,729 REALLY TRY TO BE HONEST AND FAIR 1334 00:47:37,729 --> 00:47:39,298 AND OPEN, AND IT'S REALLY WHAT 1335 00:47:39,298 --> 00:47:42,234 DRIVES NIH. 1336 00:47:42,234 --> 00:47:43,235 SO I APPRECIATE ALL YOUR 1337 00:47:43,235 --> 00:47:43,468 EFFORTS. 1338 00:47:43,468 --> 00:47:45,671 >> THE INTEGRITY AND THE PASSION 1339 00:47:45,671 --> 00:47:46,872 OF REVIEWERS IS SUCH A BIG PART 1340 00:47:46,872 --> 00:47:49,608 OF IT, AND WILL NOT BE LEECHED 1341 00:47:49,608 --> 00:48:00,018 OUT BY EXTERNAL FORCES. 1342 00:48:03,188 --> 00:48:06,291 >> SO JUST BEFORE WE TRANSITION 1343 00:48:06,291 --> 00:48:07,826 TO THE SCIENTIFIC TALK, A COUPLE 1344 00:48:07,826 --> 00:48:09,127 OF COMMERCIALS. 1345 00:48:09,127 --> 00:48:11,229 ONE, WE HEARD ABOUT THE TOWN 1346 00:48:11,229 --> 00:48:12,764 HALL ON THE DISABILITY 1347 00:48:12,764 --> 00:48:15,600 YESTERDAY. 1348 00:48:15,600 --> 00:48:17,703 THAT IS HAPPENING THIS AFTERNOON 1349 00:48:17,703 --> 00:48:18,470 AT 2:30. 1350 00:48:18,470 --> 00:48:20,906 THERE'S ALSO A TOWN HALL ON 1351 00:48:20,906 --> 00:48:23,976 MINORITY HEALTH AND HEALTH 1352 00:48:23,976 --> 00:48:27,713 DISPARITIES THAT IS HAPPENING 1353 00:48:27,713 --> 00:48:29,114 TOMORROW AT 1:00, AND THEY'VE 1354 00:48:29,114 --> 00:48:33,051 ACTUALLY REACHED OUT INDIRECTLY 1355 00:48:33,051 --> 00:48:38,423 TO ME, THEY WANT MORE INPUT ON 1356 00:48:38,423 --> 00:48:40,392 REHABILITATION FROM THIS. 1357 00:48:40,392 --> 00:48:44,896 SO I WILL BE TUNING IN TOMORROW. 1358 00:48:44,896 --> 00:48:46,999 I HAVE THE LINK, SO IF YOU'RE 1359 00:48:46,999 --> 00:48:48,200 INTERESTED, I WILL GO AHEAD AND 1360 00:48:48,200 --> 00:48:58,543 SEND IT OUT TO YOU. 1361 00:49:02,848 --> 00:49:07,019 IN THAT CASE, WELL-KNOWN TO US, 1362 00:49:07,019 --> 00:49:07,219 PEPE? 1363 00:49:07,219 --> 00:49:07,619 >> THANK YOU. 1364 00:49:07,619 --> 00:49:09,254 THANK YOU FOR THE OPPORTUNITY TO 1365 00:49:09,254 --> 00:49:16,461 SHARE SOME OF OUR WORK WITH YOU 1366 00:49:16,461 --> 00:49:17,696 AND VERY THANKFUL FOR ANY 1367 00:49:17,696 --> 00:49:18,530 FEEDBACK YOU CAN PROVIDE. 1368 00:49:18,530 --> 00:49:21,166 SO THIS STORY IS ABOUT 1369 00:49:21,166 --> 00:49:26,738 BRAIN-COMPUTER INTERFACES, IN 1370 00:49:26,738 --> 00:49:28,740 TERMS OF RESTORES FUNCTION TO 1371 00:49:28,740 --> 00:49:31,810 SENSORY MOTOR COMMUNICATION. 1372 00:49:31,810 --> 00:49:33,412 BUT ALSO REACHES THE IMAGINATION 1373 00:49:33,412 --> 00:49:35,180 OF THE PUBLIC, AND IT'S REALLY 1374 00:49:35,180 --> 00:49:37,716 IMPORTANT THAT WE UNDERSTAND, 1375 00:49:37,716 --> 00:49:40,152 YOU KNOW, THE FIELD WELL. 1376 00:49:40,152 --> 00:49:43,422 AND SO JUST A DISCLAIMER, JUST 1377 00:49:43,422 --> 00:49:49,828 FOR SUPPORT OF THE WORK. 1378 00:49:49,828 --> 00:49:51,363 SO I HAVE DIVIDED MY TALK INTO 1379 00:49:51,363 --> 00:49:51,696 THREE PARTS. 1380 00:49:51,696 --> 00:49:54,533 THERE ARE A DIFFERENT TYPE OF 1381 00:49:54,533 --> 00:49:55,567 BRAIN-COMPUTER INTERFACES. 1382 00:49:55,567 --> 00:49:58,270 THE FIRST ONE IS AN ASSESSMENT 1383 00:49:58,270 --> 00:50:00,705 OF THE GLOBAL STATE OF CLINICAL 1384 00:50:00,705 --> 00:50:03,141 TRIALS IN IMPLANTABLE 1385 00:50:03,141 --> 00:50:04,843 BRAIN-COMPUTER INTERFACES. 1386 00:50:04,843 --> 00:50:07,212 THE SECOND ONE IS OUR OWN EFFORT 1387 00:50:07,212 --> 00:50:10,582 IN DEVELOPING THESE TYPE OF 1388 00:50:10,582 --> 00:50:14,886 SYSTEMS IN A NONINVASIVE MANNER, 1389 00:50:14,886 --> 00:50:16,088 PARTICULARLY FOR 1390 00:50:16,088 --> 00:50:16,621 NEUROREHABILITATION AFTER 1391 00:50:16,621 --> 00:50:16,855 STROKE. 1392 00:50:16,855 --> 00:50:19,825 AND THE THIRD ONE IS AN 1393 00:50:19,825 --> 00:50:21,827 APPLICATION IN A DIFFERENT 1394 00:50:21,827 --> 00:50:22,594 FIELD. 1395 00:50:22,594 --> 00:50:23,595 AN APPLICATION OF THIS 1396 00:50:23,595 --> 00:50:29,701 TECHNOLOGY TO UNDERSTAND THE 1397 00:50:29,701 --> 00:50:33,572 BRAIN, ALSO OUR INTERACTION WITH 1398 00:50:33,572 --> 00:50:34,339 EACH OTHER. 1399 00:50:34,339 --> 00:50:37,175 THE END GOAL IS TO ANSWER THIS 1400 00:50:37,175 --> 00:50:42,013 QUESTION, HOW THE HUMANITIES AND 1401 00:50:42,013 --> 00:50:42,948 THE -- SO LET ME START WITH THE 1402 00:50:42,948 --> 00:50:45,517 FIRST PART, WHICH IS THIS REVIEW 1403 00:50:45,517 --> 00:50:46,384 RECENTLY PUBLISHED. 1404 00:50:46,384 --> 00:50:51,556 I'D LIKE TO ACKNOWLEDGE MY 1405 00:50:51,556 --> 00:50:56,061 FORMER -- K. MICHELLE 1406 00:50:56,061 --> 00:50:59,898 PATRICK-KRUGERRAND IAN BURKEHART 1407 00:50:59,898 --> 00:51:03,201 WHO WAS INIMPLANTED FOR ONE OF 1408 00:51:03,201 --> 00:51:06,271 THESE SYSTEMS. 1409 00:51:06,271 --> 00:51:08,540 SO IT WAS IMPORTANT TO HAVE HIS 1410 00:51:08,540 --> 00:51:10,342 PERSPECTIVE AND CONTRIBUTION IN 1411 00:51:10,342 --> 00:51:12,511 THIS REVIEW AND WITHOUT HIM, WE 1412 00:51:12,511 --> 00:51:17,782 COULDN'T HAVE DONE THIS. 1413 00:51:17,782 --> 00:51:21,520 SO THIS IS A DEFINITION OF 1414 00:51:21,520 --> 00:51:22,621 BRAIN-COMPUTER INTERFACE I LIKE 1415 00:51:22,621 --> 00:51:29,060 VERY MUCH BECAUSE BY WOLPAW BACK 1416 00:51:29,060 --> 00:51:31,163 IN 1991. 1417 00:51:31,163 --> 00:51:32,931 HE DEFINES A BRAIN-COMPUTER 1418 00:51:32,931 --> 00:51:34,766 INTERFACE AS ADDITIONAL 1419 00:51:34,766 --> 00:51:38,203 COMMUNICATION CHANNEL OF THE 1420 00:51:38,203 --> 00:51:40,605 BRAIN USING NON-NORMAL OUTPUT 1421 00:51:40,605 --> 00:51:41,072 PATHWAYS. 1422 00:51:41,072 --> 00:51:42,908 IT SORT OF PREDICTS WHERE THIS 1423 00:51:42,908 --> 00:51:43,341 IS GOING. 1424 00:51:43,341 --> 00:51:46,778 WHEN YOU TALK ABOUT 1425 00:51:46,778 --> 00:51:47,979 COMMUNICATION CHANNELS, BECAUSE 1426 00:51:47,979 --> 00:51:51,716 NOW WE ARE A SOCIETY THAT IS 1427 00:51:51,716 --> 00:51:58,223 CONNECTED, IOT, INTERNET OF 1428 00:51:58,223 --> 00:51:59,090 THINGS, AT THE CLINIC, YOU KNOW 1429 00:51:59,090 --> 00:52:01,493 IT'S VERY EASY TO SEE HOW BCI 1430 00:52:01,493 --> 00:52:03,295 PLUS IOT COULD READ TO A 1431 00:52:03,295 --> 00:52:04,396 REVOLUTION OF HOW WE INTERACT 1432 00:52:04,396 --> 00:52:06,565 WITH THE ENVIRONMENT AND OUR 1433 00:52:06,565 --> 00:52:06,998 SURROUNDINGS. 1434 00:52:06,998 --> 00:52:08,867 AND THIS COULD START TALKING 1435 00:52:08,867 --> 00:52:16,208 ABOUT AUGMENTATION AS WELL. 1436 00:52:16,208 --> 00:52:17,542 SEEING IT IN THAT CONTEXT. 1437 00:52:17,542 --> 00:52:18,210 MORE ON THAT. 1438 00:52:18,210 --> 00:52:20,679 SO THIS IS TO MY KNOWLEDGE THE 1439 00:52:20,679 --> 00:52:22,480 FIRST BRAIN-COMPUTER INTERFACE 1440 00:52:22,480 --> 00:52:26,651 ARCHITECTURE BACK IN 1973 AT 1441 00:52:26,651 --> 00:52:28,787 UCLA BY PROFESSOR VIDAL. 1442 00:52:28,787 --> 00:52:32,023 AS YOU CAN SEE THE EXPERIMENT 1443 00:52:32,023 --> 00:52:33,258 ROOM WITH THE PARTICIPANT IN 1444 00:52:33,258 --> 00:52:37,229 THIS CASE WEARING AN EEG CAP, 1445 00:52:37,229 --> 00:52:41,066 NONINVASIVE TECHNIQUE, AND THEN 1446 00:52:41,066 --> 00:52:44,569 YOU HAVE THE CONTROL ROOM WHERE 1447 00:52:44,569 --> 00:52:46,805 ALL THE -- IS HAPPENING, AND 1448 00:52:46,805 --> 00:52:49,574 THEN THE COMPUTER AREA HANDLING 1449 00:52:49,574 --> 00:52:50,742 OF THE DATA PROCESSING. 1450 00:52:50,742 --> 00:52:52,143 SO IT COULD TAKE A WHOLE ROOM 1451 00:52:52,143 --> 00:52:54,913 BACK IN THOSE DAYS. 1452 00:52:54,913 --> 00:52:56,681 NOW IT'S CHEAP. 1453 00:52:56,681 --> 00:53:06,958 SO AGAIN, DIRECT BRAIN TO 1454 00:53:06,958 --> 00:53:10,395 COMPUTER -- NOW WE'RE FOCUSING 1455 00:53:10,395 --> 00:53:12,897 ON IMPLANTED BRAIN-COMPUTER 1456 00:53:12,897 --> 00:53:17,369 INTERFACES, IBCIs FOR SHORT, 1457 00:53:17,369 --> 00:53:18,837 TRANSLATE BRAIN ACTIVITY 1458 00:53:18,837 --> 00:53:20,272 RECORDED INTRACRANIALLY INTO 1459 00:53:20,272 --> 00:53:21,706 COMMANDS FOR VIRTUAL OR PHYSICAL 1460 00:53:21,706 --> 00:53:23,341 MACHINES TO RESPHOR OR 1461 00:53:23,341 --> 00:53:24,476 REHABILITATE MOTOR, SENSORY OR 1462 00:53:24,476 --> 00:53:26,444 SPEECH FUNCTIONS, WHICH IS THE 1463 00:53:26,444 --> 00:53:27,946 DEFINITION WE TOOK HERE, WHICH 1464 00:53:27,946 --> 00:53:29,447 BY THE WAY IS DIFFERENT FROM THE 1465 00:53:29,447 --> 00:53:31,516 DEAF NATION THE FDA HAS MOVED 1466 00:53:31,516 --> 00:53:32,183 FORWARD. 1467 00:53:32,183 --> 00:53:33,485 CURRENTLY THERE ARE NO 1468 00:53:33,485 --> 00:53:35,987 IMPLANTABLE BRAIN-COMPUTER 1469 00:53:35,987 --> 00:53:37,122 INTERFACES THAT HAVE BEEN 1470 00:53:37,122 --> 00:53:40,191 APPROVED ANYWHERE FOR MEDICAL 1471 00:53:40,191 --> 00:53:41,626 USE, FOR THE MEDICAL DEVICE 1472 00:53:41,626 --> 00:53:43,028 MARKET, DESPITE BEING IN 1473 00:53:43,028 --> 00:53:46,364 CLINICAL TRIALS SINCE 1998. 1474 00:53:46,364 --> 00:53:49,968 YOU MAY KNOW THAT THE ONLY BCI 1475 00:53:49,968 --> 00:53:51,670 THAT HAS BEEN APPROVED BY THE 1476 00:53:51,670 --> 00:53:56,241 FDA IS ACTUALLY AN EEG-BASED -- 1477 00:53:56,241 --> 00:53:58,310 A FEW YEARS AGO, BUT NO 1478 00:53:58,310 --> 00:53:59,444 IMPLANTABLE ONES. 1479 00:53:59,444 --> 00:54:04,349 PEOPLE ARE WORKING VERY HARD 1480 00:54:04,349 --> 00:54:05,583 WITH THAT. 1481 00:54:05,583 --> 00:54:08,620 SO IN THIS REVIEW, THIS IS A 1482 00:54:08,620 --> 00:54:10,655 TYPE OF BCI ARCHITECTURE THAT 1483 00:54:10,655 --> 00:54:13,725 I'M GOING TO BE TALKING ABOUT, 1484 00:54:13,725 --> 00:54:19,130 AND FROM 1998 TO THE END OF 1485 00:54:19,130 --> 00:54:20,732 DECEMBER 2023, WE IDENTIFIED 1486 00:54:20,732 --> 00:54:22,734 FOUR DIFFERENT TYPES OF 1487 00:54:22,734 --> 00:54:24,703 ELECTRODES OR IBCIs. 1488 00:54:24,703 --> 00:54:27,372 THE MICRO ELECTRODE ARRAY ON THE 1489 00:54:27,372 --> 00:54:33,078 FIGURE ON THE LEFT, SO THAT'S A 1490 00:54:33,078 --> 00:54:40,518 NEUROPORT MANUFACTURED BY 1491 00:54:40,518 --> 00:54:41,186 BLACKROCK NEUROTECH AND THEN WE 1492 00:54:41,186 --> 00:54:45,790 HAVE THE NEUROTROPHIC CONE 1493 00:54:45,790 --> 00:54:46,658 DEVELOPED BY GEORGIA TECH THAT'S 1494 00:54:46,658 --> 00:54:52,897 NO LONGER IN USE. 1495 00:54:52,897 --> 00:54:54,466 THE -- MANUFACTURED BY SEVERAL 1496 00:54:54,466 --> 00:54:55,834 COMPANIES AND THE MOST RECENT IN 1497 00:54:55,834 --> 00:55:01,873 THE VASCULAR ARRAY BY SYNCRON. 1498 00:55:01,873 --> 00:55:06,010 SHE VARY -- ONE OR TWO 1499 00:55:06,010 --> 00:55:07,212 ELECTRODES, MICRO ELECTRODE 1500 00:55:07,212 --> 00:55:09,347 ARRAYS, YOU CAN HAVE MULTIPLE OF 1501 00:55:09,347 --> 00:55:15,687 THESE IMPLANTED. 1502 00:55:15,687 --> 00:55:19,391 MANY ELECTRODES AND THE -- 16 SO 1503 00:55:19,391 --> 00:55:22,727 THERE'S VARIATION IN TERMS OF 1504 00:55:22,727 --> 00:55:25,897 THE FORM FACTOR, THE DENSITY. 1505 00:55:25,897 --> 00:55:29,067 SOMETHING IMPORTANT TO SAY IS 1506 00:55:29,067 --> 00:55:30,935 THAT THE ENDOVASCULAR ARRAY IS A 1507 00:55:30,935 --> 00:55:31,669 PERMANENT IMPLANT. 1508 00:55:31,669 --> 00:55:34,606 THERE'S NO PLAN TO EXPLANT THAT. 1509 00:55:34,606 --> 00:55:36,374 SO THAT'S PERMANENT. 1510 00:55:36,374 --> 00:55:38,810 SO YOU REPORT BRAIN ACTIVITY 1511 00:55:38,810 --> 00:55:41,880 FROM ANY OF THESE ELECTRODES AND 1512 00:55:41,880 --> 00:55:45,150 THROUGH ANALOG TO -- CONVERSION, 1513 00:55:45,150 --> 00:55:47,018 A COMPUTER BRAIN FOR 1514 00:55:47,018 --> 00:55:49,120 PREPROCESSING AND DECODING, 1515 00:55:49,120 --> 00:55:50,288 LEADING TO MULTIPLE COMMANDS 1516 00:55:50,288 --> 00:55:51,523 THAT CAN BE USED FOR 1517 00:55:51,523 --> 00:55:52,424 COMMUNICATION OR MOTOR CONTROL. 1518 00:55:52,424 --> 00:55:54,325 THESE ARE SOME EXAMPLES OF THE 1519 00:55:54,325 --> 00:56:01,332 DEVICE THAT YOU CAN CONTROL. 1520 00:56:01,332 --> 00:56:03,101 A SPEECH SYNTHESIZER, COMPUTER 1521 00:56:03,101 --> 00:56:05,336 APP, A GAME, ASSISTIVE ROBOT, 1522 00:56:05,336 --> 00:56:07,739 EVEN FUNCTIONAL ELECTRICAL 1523 00:56:07,739 --> 00:56:12,010 STIMULATION AND OUR COLLEAGUE 1524 00:56:12,010 --> 00:56:14,612 IAN IS HERE USING THAT TO 1525 00:56:14,612 --> 00:56:19,150 CONTROL FES FOR GRASPING. 1526 00:56:19,150 --> 00:56:20,452 RESTORATION OF GRASPING. 1527 00:56:20,452 --> 00:56:28,693 CERTAINLY MORE RECENTLY, INPUT 1528 00:56:28,693 --> 00:56:31,229 BCIs SEND FEEDBACK FROM A -- 1529 00:56:31,229 --> 00:56:33,298 OR AN EFFECTOR CAN BE PROCESSED 1530 00:56:33,298 --> 00:56:38,570 FOR MICRO STIMULATION IN CORTEX 1531 00:56:38,570 --> 00:56:44,709 TO PRODUCE -- TO EVOKE A SENSORY 1532 00:56:44,709 --> 00:56:45,043 PERCEPT. 1533 00:56:45,043 --> 00:56:49,247 SO WE HAVE AN OUTPUT BCI AND AN 1534 00:56:49,247 --> 00:56:50,782 INPUT BCI HERE, THE SYSTEM WE'RE 1535 00:56:50,782 --> 00:56:54,953 TALKING ABOUT TODAY. 1536 00:56:54,953 --> 00:56:59,691 SO AGAIN, I WILL EMPHASIZE HERE, 1537 00:56:59,691 --> 00:57:01,993 THE FOCUS ON COMMUNICATION, 1538 00:57:01,993 --> 00:57:03,228 SENSORY AND MOTOR CONTROL. 1539 00:57:03,228 --> 00:57:07,899 AND THE PARTICIPANT THAT WORE 1540 00:57:07,899 --> 00:57:17,442 PARWEREPART OF THIS CLINICAL TRH 1541 00:57:17,442 --> 00:57:18,510 PARTICIPANTS AFFECTED WITH 1542 00:57:18,510 --> 00:57:21,980 SPINAL CORD INJURY, ALS OR 1543 00:57:21,980 --> 00:57:22,447 STROKE. 1544 00:57:22,447 --> 00:57:24,048 NOW WE ALL KNOW THESE SYSTEMS 1545 00:57:24,048 --> 00:57:27,986 ARE SHOWING CLINICALLY VIABLE 1546 00:57:27,986 --> 00:57:30,488 RESULTS AND YESTERDAY PRESENTED 1547 00:57:30,488 --> 00:57:33,191 SOME OF THE MOST RECENT WORK SO 1548 00:57:33,191 --> 00:57:34,259 THERE'S A LOT OF EXCITEMENT. 1549 00:57:34,259 --> 00:57:35,593 JUST TO GIVE YOU A FEW EXAMPLES, 1550 00:57:35,593 --> 00:57:39,731 THIS IS FROM EPFL LAST MAY, 1551 00:57:39,731 --> 00:57:41,099 WHERE THEY DEMONSTRATE 1552 00:57:41,099 --> 00:57:42,867 RESTORATION OF WALKING IN A 1553 00:57:42,867 --> 00:57:45,637 PARTICIPANT WITH SPINAL CORD 1554 00:57:45,637 --> 00:57:46,104 INJURY. 1555 00:57:46,104 --> 00:57:52,310 I MEAN, AMAZING. 1556 00:57:52,310 --> 00:57:55,813 AND THEN WE HAD -- FOR THE BRAIN 1557 00:57:55,813 --> 00:57:58,049 GATE, PROBABLY ONE OF THE 1558 00:57:58,049 --> 00:58:02,520 LONGEST OPERATING IBCI GROUPS AT 1559 00:58:02,520 --> 00:58:05,857 STANFORD, THEY DEMONSTRATED A 1560 00:58:05,857 --> 00:58:07,959 SPEECH BCI ACHIEVING 64 WORDS 1561 00:58:07,959 --> 00:58:09,694 PER MEANT WITH LESS THAN 5% 1562 00:58:09,694 --> 00:58:11,029 ERROR. 1563 00:58:11,029 --> 00:58:13,865 TET, WE HAVE UCSF DR. CHANG'S 1564 00:58:13,865 --> 00:58:16,301 LAB ALSO MAKING GREAT PROGRESS 1565 00:58:16,301 --> 00:58:22,707 ON THESE TYPE OF SYSTEMS, AND 1566 00:58:22,707 --> 00:58:23,708 ACHIEVING 79 WORDS PER MINUTE 1567 00:58:23,708 --> 00:58:26,110 WITH LESS THAN 25% ERROR. 1568 00:58:26,110 --> 00:58:31,416 NOW, YOU CAN SEE THAT THE PRIOR 1569 00:58:31,416 --> 00:58:36,421 OUT COMEOUTCOME WAS LESS THAN 2S 1570 00:58:36,421 --> 00:58:37,188 PER MINUTE. 1571 00:58:37,188 --> 00:58:38,489 THIS IS A BIG ADVANCEMENT. 1572 00:58:38,489 --> 00:58:40,425 BUT WE HAVE THE TYPICAL RATE FOR 1573 00:58:40,425 --> 00:58:42,493 ENGLISH IS BETWEEN 120 AND 160 1574 00:58:42,493 --> 00:58:43,027 WORDS PER MINUTE. 1575 00:58:43,027 --> 00:58:44,963 SO WE HAVE SOME ROOM, BUT WE'RE 1576 00:58:44,963 --> 00:58:48,900 GETTING CLOSER TO THAT. 1577 00:58:48,900 --> 00:58:50,969 SO THIS IS REALLY A GAME CHANGER 1578 00:58:50,969 --> 00:58:52,904 FOR PEOPLE THAT HAVE LOST 1579 00:58:52,904 --> 00:58:54,739 FUNCTION, LIKE ALS, YOU KNOW, 1580 00:58:54,739 --> 00:58:56,074 AND CANNOT COMMUNICATE WITH 1581 00:58:56,074 --> 00:58:58,910 THEIR FRIENDS, FAMILY, 1582 00:58:58,910 --> 00:59:00,211 RELATIVES. 1583 00:59:00,211 --> 00:59:05,316 NOW, THIS ALSO, YOU KNOW, A LOT 1584 00:59:05,316 --> 00:59:07,018 OF INVESTMENT FROM THE PUBLIC -- 1585 00:59:07,018 --> 00:59:09,354 FROM THE PRIVATE INDUSTRY. 1586 00:59:09,354 --> 00:59:19,964 SO EVERYBODY KNOWS NEURALINK. -- 1587 00:59:20,298 --> 00:59:21,633 TO MAKE A LOT OF PROGRESS EVEN 1588 00:59:21,633 --> 00:59:25,637 THIS YEAR, AND THEY'RE REALLY -- 1589 00:59:25,637 --> 00:59:28,373 THE PLAN IS TO HAVE BCI THAT IS 1590 00:59:28,373 --> 00:59:31,142 FULLY IMPLANTABLE, COSMETICALLY 1591 00:59:31,142 --> 00:59:32,710 INVISIBLE AND DESIGNED TO LET 1592 00:59:32,710 --> 00:59:35,046 YOU CONTROL A COMPUTER OR MOBILE 1593 00:59:35,046 --> 00:59:37,115 DEVICE ANYWHERE YOU GO. 1594 00:59:37,115 --> 00:59:39,851 SO REMEMBER BCI PLUS IOT, SO 1595 00:59:39,851 --> 00:59:41,052 THIS CONNECTIVITY PUSHING THIS 1596 00:59:41,052 --> 00:59:42,120 FORWARD. 1597 00:59:42,120 --> 00:59:45,390 NOW, WE ALSO HAVE ANOTHER MAJOR 1598 00:59:45,390 --> 00:59:50,161 PLAYER, BLACKROCK NEUROTECH, 1599 00:59:50,161 --> 00:59:51,796 $200 MILLION INVESTMENT, AND 1600 00:59:51,796 --> 00:59:56,601 JUST A RECENT REPORT BY MORGAN 1601 00:59:56,601 --> 00:59:59,537 STANLEY, THEY ARE PREDICTING 1602 00:59:59,537 --> 01:00:01,673 $400 BILLION MARKET FOR BCI. 1603 01:00:01,673 --> 01:00:03,007 CONSIDER THAT JUST IN THE U.S. 1604 01:00:03,007 --> 01:00:03,741 ALONE. 1605 01:00:03,741 --> 01:00:05,743 RIGHT? 1606 01:00:05,743 --> 01:00:09,313 NOW, WITH ALL THAT, WITH ALL 1607 01:00:09,313 --> 01:00:11,816 THESE ADVANCES, AND GIVEN THAT 1608 01:00:11,816 --> 01:00:14,118 SOME PLAYERS MAINLY USE SOCIAL 1609 01:00:14,118 --> 01:00:15,853 MEDIA TO REPORT. 1610 01:00:15,853 --> 01:00:19,090 IT'S VERY IMPORTANT THAT 1611 01:00:19,090 --> 01:00:21,826 DISSEMINATION OF THE INFORMATION 1612 01:00:21,826 --> 01:00:23,561 IS DONE, SO THE PUBLIC CAN 1613 01:00:23,561 --> 01:00:26,531 UNDERSTAND REALLY WHAT THE STATE 1614 01:00:26,531 --> 01:00:30,735 OF THIS TECHNOLOGY IS. 1615 01:00:30,735 --> 01:00:31,936 BUT ALSO IT IS VERY IMPORTANT TO 1616 01:00:31,936 --> 01:00:33,805 HAVE A GLOBAL UNDERSTANDING TO 1617 01:00:33,805 --> 01:00:35,106 IDENTIFY CHALLENGES, BARRIERS 1618 01:00:35,106 --> 01:00:35,840 AND OPPORTUNITIES TO IMPROVE 1619 01:00:35,840 --> 01:00:38,342 THIS TECHNOLOGY SO THAT WE CAN 1620 01:00:38,342 --> 01:00:40,978 MAKE THEM AVAILABLE TO THE END 1621 01:00:40,978 --> 01:00:45,450 USER SOONER. 1622 01:00:45,450 --> 01:00:48,152 SO THOSE WERE SOME OF THE 1623 01:00:48,152 --> 01:00:51,756 REASONS THAT LED US TO EMBARK ON 1624 01:00:51,756 --> 01:00:54,358 THIS REVIEW. 1625 01:00:54,358 --> 01:01:02,200 AND THIS IS A PRISMA CHART FOR 1626 01:01:02,200 --> 01:01:04,268 SYSTEMATIC REVIEW, AND OF COURSE 1627 01:01:04,268 --> 01:01:08,639 WE HAVE CRITERIA I MENTIONED FOR 1628 01:01:08,639 --> 01:01:13,311 CHRONIC BCIs LAST YEAR, AND OF 1629 01:01:13,311 --> 01:01:17,915 COURSE WE USE BASIS AVAILABLE, 1630 01:01:17,915 --> 01:01:22,553 PUBMED, CLINICAL TR CLINICALTRI, 1631 01:01:22,553 --> 01:01:26,057 WE CONSTRUCTED ONE SITES, PRESS 1632 01:01:26,057 --> 01:01:28,893 RELEASES, WE CHECK PI GOOGLE 1633 01:01:28,893 --> 01:01:30,194 SCHOLAR, BECAUSE WE FOUND THAT 1634 01:01:30,194 --> 01:01:31,896 FROM THE PUBLICATION, FROM THE 1635 01:01:31,896 --> 01:01:33,664 DATA THAT WE GOT FROM 1636 01:01:33,664 --> 01:01:34,532 PUBLICATIONS, THERE WAS A 1637 01:01:34,532 --> 01:01:37,168 MISMATCH WITH WHAT WAS BEING 1638 01:01:37,168 --> 01:01:38,636 ANNOUNCED ON SOCIAL MEDIA ON THE 1639 01:01:38,636 --> 01:01:39,070 TV. 1640 01:01:39,070 --> 01:01:42,907 SO WE COULDN'T FIND THOSE 1641 01:01:42,907 --> 01:01:43,875 PARTICIPANTS THERE. 1642 01:01:43,875 --> 01:01:45,943 SO WE USED A NON-TRADITIONAL 1643 01:01:45,943 --> 01:01:48,713 APPROACH AND MY COLLABORATOR IAN 1644 01:01:48,713 --> 01:01:50,081 WAS INSTRUMENTAL BECAUSE HE 1645 01:01:50,081 --> 01:01:54,018 KNOWS PEOPLE THAT HAVE BEEN 1646 01:01:54,018 --> 01:01:56,487 IMPLANTED, AND WE WENT TO 1647 01:01:56,487 --> 01:02:00,558 CONFERENCES, WE'D LOOK AT SOCIAL 1648 01:02:00,558 --> 01:02:02,093 MEDIA PRESS RELEASES. 1649 01:02:02,093 --> 01:02:04,428 BUT WHAT WE DID TOO IS, ONCE WE 1650 01:02:04,428 --> 01:02:06,297 GOT THE DATA, WE WENT BACK TO 1651 01:02:06,297 --> 01:02:09,700 EACH OF THE GROUPS AND TOLD 1652 01:02:09,700 --> 01:02:10,835 THEM, HEY, THIS IS THE 1653 01:02:10,835 --> 01:02:14,705 INFORMATION WE HAVE IN CLINICAL 1654 01:02:14,705 --> 01:02:16,107 TRIALS, WOULD YOU MIND CHECKING 1655 01:02:16,107 --> 01:02:16,974 FOR ACCURACY? 1656 01:02:16,974 --> 01:02:19,210 WOULD YOU CORRECT ANY MISTAKES, 1657 01:02:19,210 --> 01:02:22,013 WOULD YOU MAKE SURE THAT THIS IS 1658 01:02:22,013 --> 01:02:23,481 THE FACT, BECAUSE WE WANT TO 1659 01:02:23,481 --> 01:02:26,884 SHARE THIS, AND THERE'S NO WAY 1660 01:02:26,884 --> 01:02:28,352 AT PRESENT THE GROUP COULD 1661 01:02:28,352 --> 01:02:29,787 VERIFY THAT BUT THE P.I. 1662 01:02:29,787 --> 01:02:31,189 THEMSELVES. 1663 01:02:31,189 --> 01:02:36,227 AND SO THIS WAS IMPORTANT 1664 01:02:36,227 --> 01:02:38,529 BECAUSE 25% OF THE PARTICIPANTS, 1665 01:02:38,529 --> 01:02:40,097 YOU CANNOT FIND IN THE 1666 01:02:40,097 --> 01:02:40,665 LITERATURE. 1667 01:02:40,665 --> 01:02:46,771 25%. 1668 01:02:46,771 --> 01:02:48,539 SO WE WERE ABLE TO IDENTIFY 67 1669 01:02:48,539 --> 01:02:50,007 PARTICIPANTS IN OUR REVIEW. 1670 01:02:50,007 --> 01:02:53,945 AND NOBODY KNEW THAT. 1671 01:02:53,945 --> 01:02:58,316 NOW, THIS IS A VISUAL SUMMARY OF 1672 01:02:58,316 --> 01:03:03,187 THE DATA, OR SOME OF IT. 1673 01:03:03,187 --> 01:03:03,421 PLEASE. 1674 01:03:03,421 --> 01:03:04,722 >> SO A PARTICIPANT IS A PERSON 1675 01:03:04,722 --> 01:03:06,057 WITH AN IMPLANT OR -- 1676 01:03:06,057 --> 01:03:07,225 >> A PARTICIPANT IS A PERSON 1677 01:03:07,225 --> 01:03:11,596 WITH AN IMPLANT, YEAH. 1678 01:03:11,596 --> 01:03:15,833 SO THE FIRST COLUMN ARE THE IBCI 1679 01:03:15,833 --> 01:03:21,372 GROUPS AND THERE ARE 21 OF THEM. 1680 01:03:21,372 --> 01:03:22,907 21 GROUPS WORLDWIDE THROUGH 1681 01:03:22,907 --> 01:03:24,108 DECEMBER 2023 HAVE IMPLANTED A 1682 01:03:24,108 --> 01:03:24,542 PARTICIPANT. 1683 01:03:24,542 --> 01:03:25,843 AND THE SECOND COLUMN IS THE 1684 01:03:25,843 --> 01:03:28,246 NUMBER OF PARTICIPANTS, I'M NOT 1685 01:03:28,246 --> 01:03:30,314 GOING TO READ THIS, BUT BRAIN 1686 01:03:30,314 --> 01:03:32,683 GATE IS LEADING THAT WITH 16 1687 01:03:32,683 --> 01:03:33,017 PARTICIPANTS. 1688 01:03:33,017 --> 01:03:34,619 I WANT TO COMMEND BRAINGATE 1689 01:03:34,619 --> 01:03:35,987 BECAUSE THEY ARE ONE OF THE 1690 01:03:35,987 --> 01:03:38,055 GROUPS THAT REALLY ARE 1691 01:03:38,055 --> 01:03:40,124 FORTHCOMING IN TERMS WITH 1692 01:03:40,124 --> 01:03:41,759 SHARING DATA, EVEN REPORTING 1693 01:03:41,759 --> 01:03:43,060 ADVERSE EVENTS AND REALLY MAKING 1694 01:03:43,060 --> 01:03:45,596 THE DATA AVAILABLE TO OTHERS. 1695 01:03:45,596 --> 01:03:47,598 SO I NEED TO -- I'D LIKE TO 1696 01:03:47,598 --> 01:03:53,638 COMMEND THEM, PARTICULARLY 1697 01:03:53,638 --> 01:03:54,705 DR. OCCBAR FOR THAT. 1698 01:03:54,705 --> 01:03:57,608 THE NEXT ONE IS A COMPANY THAT 1699 01:03:57,608 --> 01:04:00,778 CAME TO THE MARKET IN 2019 WITH 1700 01:04:00,778 --> 01:04:03,848 10 PARTICIPANTS HERE. 1701 01:04:03,848 --> 01:04:05,182 AND THAT'S OTHER GROUPS BUT 1702 01:04:05,182 --> 01:04:06,884 THERE ARE 21 OF THEM. 1703 01:04:06,884 --> 01:04:08,719 NOW WE ALSO HAVE THE TYPE OF 1704 01:04:08,719 --> 01:04:09,954 ELECTRODE, I TOLD YOU THERE ARE 1705 01:04:09,954 --> 01:04:11,656 FOUR, AND THEN THE TYPE OF BCI 1706 01:04:11,656 --> 01:04:14,926 THAT THEY ARE WORKING ON. 1707 01:04:14,926 --> 01:04:16,928 SOME GROUPS ARE FOCUSING JUST ON 1708 01:04:16,928 --> 01:04:20,264 THE MOTOR BCI. 1709 01:04:20,264 --> 01:04:22,667 NOW EACH ROLE IN THIS GRID IS A 1710 01:04:22,667 --> 01:04:23,000 PARTICIPANT. 1711 01:04:23,000 --> 01:04:28,139 SO WE HAVE THE SEX AND THE AGE. 1712 01:04:28,139 --> 01:04:29,073 WHAT'S IMPORTANT HERE ARE THESE 1713 01:04:29,073 --> 01:04:30,808 BARS THAT ARE COLOR-CODED. 1714 01:04:30,808 --> 01:04:34,312 SO AT THE BEGINNING OF THE BAR 1715 01:04:34,312 --> 01:04:36,213 REPRESENTS THE IMPLEMENTATION 1716 01:04:36,213 --> 01:04:37,114 MONTHS AND YEAR, AND WE HAVE THE 1717 01:04:37,114 --> 01:04:37,548 YEAR HERE. 1718 01:04:37,548 --> 01:04:39,283 I HAVE TO DIVIDE THIS INTO TWO 1719 01:04:39,283 --> 01:04:40,952 GRAPHS BECAUSE IT'S TOO LONG TO 1720 01:04:40,952 --> 01:04:43,421 FEED VERTICALLY. 1721 01:04:43,421 --> 01:04:46,257 NOW, THE END OF THE BAR IS THE 1722 01:04:46,257 --> 01:04:48,392 COMPLETION OF THE CLINICAL 1723 01:04:48,392 --> 01:04:48,993 TRIAL. 1724 01:04:48,993 --> 01:04:53,230 THIS WAS VERY HARD TO GET. 1725 01:04:53,230 --> 01:04:54,932 IT'S NOT ALWAYS THIS INFORMATION 1726 01:04:54,932 --> 01:04:57,501 IS SHARED. 1727 01:04:57,501 --> 01:04:59,670 YOU CAN SEE THE LONGEST IMPLANT 1728 01:04:59,670 --> 01:05:03,040 IS 13 YEARS FROM USING THE 1729 01:05:03,040 --> 01:05:04,775 NEUROTROPHIC ELECTRODE, GEORGIA 1730 01:05:04,775 --> 01:05:08,279 TECH IS NO LONGER OPERATIONAL, 1731 01:05:08,279 --> 01:05:14,485 AND THEN THERE ARE NINE SOME ARE 1732 01:05:14,485 --> 01:05:15,886 JUST TOO YOUNG TO KNOW. 1733 01:05:15,886 --> 01:05:21,592 NOW, YOU CAN SEE FROM THE DEEP 1734 01:05:21,592 --> 01:05:23,260 COLOR OF THE BAR, THE CLINICAL 1735 01:05:23,260 --> 01:05:23,461 GROUP. 1736 01:05:23,461 --> 01:05:26,697 SO WE HAVE 43% HAVE SPINAL CORD 1737 01:05:26,697 --> 01:05:29,233 INJURY. 1738 01:05:29,233 --> 01:05:33,137 30% MOTOR NEURON DEGENERATION. 1739 01:05:33,137 --> 01:05:33,904 17% STROKE. 1740 01:05:33,904 --> 01:05:38,609 AND 10% WE DON'T KNOW BECAUSE 1741 01:05:38,609 --> 01:05:40,211 THE DATA WASN'T SHARED WITH US. 1742 01:05:40,211 --> 01:05:42,313 >> PEPE, JUST TO CLARIFY, ARE 1743 01:05:42,313 --> 01:05:43,280 YOU SAYING AT THE END OF THE 1744 01:05:43,280 --> 01:05:44,382 EXPERIMENT OR IT'S THE END OF 1745 01:05:44,382 --> 01:05:45,850 THE LIFETIME OF THE IMPLANT? 1746 01:05:45,850 --> 01:05:50,454 >> THE END OF -- YEAH, THAT'S AN 1747 01:05:50,454 --> 01:05:58,462 EXCELLENT QUESTION BECAUSE WL 1748 01:05:58,462 --> 01:05:59,964 THE QUESTION -- LONGEVITY OF THE 1749 01:05:59,964 --> 01:06:00,731 IMPLANT BUT SOMETIMES THE 1750 01:06:00,731 --> 01:06:01,499 INFORMATION IS NOT POSSIBLE. 1751 01:06:01,499 --> 01:06:02,767 SO THIS IS THE BEST INFORMATION 1752 01:06:02,767 --> 01:06:04,668 WE HAVE. 1753 01:06:04,668 --> 01:06:07,071 THE END OF THE PARTICIPATION OF 1754 01:06:07,071 --> 01:06:11,542 THE PARTICIPANT ON THE CLINICAL 1755 01:06:11,542 --> 01:06:16,647 TRIAL. 1756 01:06:16,647 --> 01:06:20,484 SO YOU SEE THE SPINAL CORD 1757 01:06:20,484 --> 01:06:28,559 INJURY IS 43%. 1758 01:06:28,559 --> 01:06:38,169 NEXT THE ENDOVASCULAR 15%,, 1759 01:06:38,169 --> 01:06:38,736 NEUROTROPHIC 6%. 1760 01:06:38,736 --> 01:06:40,137 >> JUST TO CLARIFY, YOU SAID ONE 1761 01:06:40,137 --> 01:06:41,572 OF YOUR COLLABORATORS -- 1762 01:06:41,572 --> 01:06:42,373 >> CO-AUTHORS. 1763 01:06:42,373 --> 01:06:44,241 >> CO-AUTHORS HAD AN IMPLANT AND 1764 01:06:44,241 --> 01:06:45,342 THEN HE REMOVED IT OR -- 1765 01:06:45,342 --> 01:06:48,045 >> IT WAS REMOVED BECAUSE AN 1766 01:06:48,045 --> 01:06:48,312 INFECTION. 1767 01:06:48,312 --> 01:06:48,746 >> GOT IT. 1768 01:06:48,746 --> 01:06:50,381 >> AFTER 7 1/2 YEARS OR SO. 1769 01:06:50,381 --> 01:06:51,515 >> HE WAS DOCTOR OKAY. 1770 01:06:51,515 --> 01:06:54,885 -- OKAY.AND IS HE PART OF -- 1771 01:06:54,885 --> 01:07:00,791 >> HE'S THERE. 1772 01:07:00,791 --> 01:07:01,725 AND THE OTHER INFORMATION HERE 1773 01:07:01,725 --> 01:07:06,897 IS I DIVIDED THIS INTO AN EARLY 1774 01:07:06,897 --> 01:07:09,400 ERA HERE TO 2014 AND THEN A 1775 01:07:09,400 --> 01:07:12,236 BRAIN AREA AND THIS BRAIN AREA 1776 01:07:12,236 --> 01:07:13,337 COINCIDES WITH THE BRAIN 1777 01:07:13,337 --> 01:07:18,042 INITIATIVE INVESTMENT, AND ALSO 1778 01:07:18,042 --> 01:07:20,211 THE HUMAN BRAIN PROJECT IN 1779 01:07:20,211 --> 01:07:20,544 EUROPE. 1780 01:07:20,544 --> 01:07:23,914 YOU CAN SEE THAT THAT INVESTMENT 1781 01:07:23,914 --> 01:07:26,016 DIRECTLY OR INDIRECTLY LED TO AN 1782 01:07:26,016 --> 01:07:29,487 EXPLOSION IN THE NUMBER OF, YOU 1783 01:07:29,487 --> 01:07:32,323 KNOW, CLINICAL TRIALS, 28 OF 1784 01:07:32,323 --> 01:07:33,757 THEM, AND ALSO THE NUMBER OF 1785 01:07:33,757 --> 01:07:36,760 PARTICIPANTS AND COMPANIES. 1786 01:07:36,760 --> 01:07:37,995 SO I THINK THAT WAS A GOOD OUT 1787 01:07:37,995 --> 01:07:42,433 COME OF THAT INVESTMENT, RIGHT? 1788 01:07:42,433 --> 01:07:44,935 NOW, FROM ALL OF THIS, I TOLD 1789 01:07:44,935 --> 01:07:47,738 YOU THAT WE SOLICITED 1790 01:07:47,738 --> 01:07:49,406 CONFIRMATION, WE HAVE TWO GROUPS 1791 01:07:49,406 --> 01:07:52,877 THAT DID NOT CONFIRM IN FRANCE 1792 01:07:52,877 --> 01:07:57,148 AND THE COMPANY AND WE HOPE THAT 1793 01:07:57,148 --> 01:07:59,316 THEY -- THE DATA SOON. 1794 01:07:59,316 --> 01:08:03,154 SO SOME INFORMATION ABOUT THE 1795 01:08:03,154 --> 01:08:04,388 PARTICIPANT DATA WE MIGHT FIND 1796 01:08:04,388 --> 01:08:04,688 INTERESTING. 1797 01:08:04,688 --> 01:08:06,824 SO THE NUMBER OF YEARS BETWEEN 1798 01:08:06,824 --> 01:08:07,825 IMPLANTATION AND THE FIRST 1799 01:08:07,825 --> 01:08:10,327 MENTION OF THE PARTICIPANT AND 1800 01:08:10,327 --> 01:08:12,263 THE DATA IN A PUBLICATION IS AN 1801 01:08:12,263 --> 01:08:13,664 AVERAGE OF THREE YEARS, BUT IT 1802 01:08:13,664 --> 01:08:16,834 CAN TAKE MORE THAN FIVE YEARS. 1803 01:08:16,834 --> 01:08:18,235 SO THERE'S A LONG DELAY BETWEEN 1804 01:08:18,235 --> 01:08:19,236 THE IMPLANT AND THE FIRST TIME 1805 01:08:19,236 --> 01:08:20,971 YOU SEE THAT REPORTED IN A 1806 01:08:20,971 --> 01:08:23,274 PUBLICATION. 1807 01:08:23,274 --> 01:08:25,576 IT'S NOT VERY GOOD FOR SCIENCE. 1808 01:08:25,576 --> 01:08:30,247 NOW YOU LOOK AT THE PARTICIPANTS 1809 01:08:30,247 --> 01:08:31,348 INCLUDED IN THE MOST 1810 01:08:31,348 --> 01:08:32,850 PUBLICATIONS, RIGHT? 1811 01:08:32,850 --> 01:08:34,051 BRAINGATE, THEY ACCOUNT FOR 1812 01:08:34,051 --> 01:08:36,120 ABOUT 80 PUBLICATIONS OUT OF 1813 01:08:36,120 --> 01:08:37,321 165. 1814 01:08:37,321 --> 01:08:42,359 AND YOU CAN SEE THE PARTICIPANTS 1815 01:08:42,359 --> 01:08:45,062 THAT HAS PROVIDED DATA IN THE 1816 01:08:45,062 --> 01:08:47,131 MOST PUBLICATIONS IS FROM 1817 01:08:47,131 --> 01:08:49,133 BRAINGATE WITH 22 PUBLICATIONS. 1818 01:08:49,133 --> 01:08:53,804 THAT MEANS THAT THERE ARE 57 1819 01:08:53,804 --> 01:08:54,672 PARTICIPANTS THAT HAVE 1820 01:08:54,672 --> 01:08:58,042 CONTRIBUTED LESS THAN 1821 01:08:58,042 --> 01:08:58,809 7 PUBLICATIONS OR EVEN NONE, 1822 01:08:58,809 --> 01:08:59,577 RIGHT? 1823 01:08:59,577 --> 01:09:03,614 SO ONLY A VERY SMALL GROUP OF 1824 01:09:03,614 --> 01:09:06,116 DATA AND OUTCOMES ARE BEING 1825 01:09:06,116 --> 01:09:06,784 SHARED. 1826 01:09:06,784 --> 01:09:11,689 NOT NECESSARILY, YOU KNOW, DUE 1827 01:09:11,689 --> 01:09:16,160 TO THE GROUP, BUT -- BECAUSE 1828 01:09:16,160 --> 01:09:17,361 THESE THINGS TAKE TIME, BUT WE 1829 01:09:17,361 --> 01:09:20,831 WOULD EXPECT THE DATA TO BE OR 1830 01:09:20,831 --> 01:09:22,566 AT LEAST THESE RESOURCES TO BE 1831 01:09:22,566 --> 01:09:23,100 SHARED. 1832 01:09:23,100 --> 01:09:24,435 SO NOW LET ME SUMMARIZE SOME OF 1833 01:09:24,435 --> 01:09:26,270 THE KEY POINTS HERE. 1834 01:09:26,270 --> 01:09:28,205 SO WE HAVE 21 GROUPS WORLDWIDE 1835 01:09:28,205 --> 01:09:30,741 AS OF DECEMBER. 1836 01:09:30,741 --> 01:09:33,043 28 CLINICAL TRIALS WITH 67 1837 01:09:33,043 --> 01:09:35,946 PARTICIPANTS, 31 OF THEM ARE 1838 01:09:35,946 --> 01:09:38,582 CURRENTLY ACTIVE, PROVIDING 1839 01:09:38,582 --> 01:09:39,049 DATA. 1840 01:09:39,049 --> 01:09:42,853 FOUR TYPES OF ELECTRODES AND 16S 1841 01:09:42,853 --> 01:09:46,557 OVER 25 YEARS. 1842 01:09:46,557 --> 01:09:48,125 THE MEAN PARTICIPATION LONGEVITY 1843 01:09:48,125 --> 01:09:50,828 IS ABOUT 40 MONTHS FOR PATIENTS 1844 01:09:50,828 --> 01:09:53,731 CURRENTLY ACTIVE, RIGHT? 1845 01:09:53,731 --> 01:09:55,366 NOT TOO LONG. 1846 01:09:55,366 --> 01:09:58,569 YOU NEED A LIFELONG SOLUTION. 1847 01:09:58,569 --> 01:09:59,970 40 MONTHS IS NOT A LIFELONG 1848 01:09:59,970 --> 01:10:00,738 SOLUTION. 1849 01:10:00,738 --> 01:10:03,374 BUT IT'S INCREASING. 1850 01:10:03,374 --> 01:10:06,243 HOWEVER, THE CONSISTENCY AND 1851 01:10:06,243 --> 01:10:10,047 PERFORMANCE OF THESE DEVICES 1852 01:10:10,047 --> 01:10:11,215 VARIES ACROSS WIDELY. 1853 01:10:11,215 --> 01:10:14,184 SO WE SEE GREAT ADVANCES OF A 1854 01:10:14,184 --> 01:10:17,021 PARTICIPANT, BUT YOU KNOW, 1855 01:10:17,021 --> 01:10:17,421 THERE'S 67. 1856 01:10:17,421 --> 01:10:20,291 IT'S A QUESTION OF HOW WE CAN 1857 01:10:20,291 --> 01:10:21,692 IMPROVE THE RELIABILITY OF THIS 1858 01:10:21,692 --> 01:10:25,296 SYSTEM AND THE LONGEVITY OF THE 1859 01:10:25,296 --> 01:10:25,863 ELECTRODES. 1860 01:10:25,863 --> 01:10:26,964 THERE ARE MANY THINGS WE STILL 1861 01:10:26,964 --> 01:10:28,232 DON'T KNOW. 1862 01:10:28,232 --> 01:10:32,069 THE TIMELINE FROM IMPLANTATION 1863 01:10:32,069 --> 01:10:33,103 TO THE FIRST PUBLICATION IS 1864 01:10:33,103 --> 01:10:33,637 THREE YEARS. 1865 01:10:33,637 --> 01:10:34,271 IS THERE A QUESTION? 1866 01:10:34,271 --> 01:10:36,507 >> THIS IS FRANCISCO. 1867 01:10:36,507 --> 01:10:37,374 JUST A QUICK QUESTION. 1868 01:10:37,374 --> 01:10:44,948 SO YOU'RE SAYING THAT OF THE 28 1869 01:10:44,948 --> 01:10:48,852 CLINICAL TRIALS, THERE'S 67 1870 01:10:48,852 --> 01:10:51,221 PARTICIPANTS, SO ROUGHLY LIKE 1871 01:10:51,221 --> 01:10:54,425 TWO PARTICIPANTS PER TRIAL? 1872 01:10:54,425 --> 01:10:55,993 >> SOME CLINICAL TRIALS HAD 1873 01:10:55,993 --> 01:10:57,761 CERTAINLY MORE THAN THAT. 1874 01:10:57,761 --> 01:10:59,196 BRAINGATE HAS 16 PARTICIPANTS, 1875 01:10:59,196 --> 01:11:00,097 FOR EXAMPLE. 1876 01:11:00,097 --> 01:11:02,766 >> YEAH, BUT ON AVERAGE, ON 1877 01:11:02,766 --> 01:11:04,968 AVERAGE. 1878 01:11:04,968 --> 01:11:07,171 >> YEAH, YOU CAN DO THAT MATH. 1879 01:11:07,171 --> 01:11:07,838 >> MM-HMM. 1880 01:11:07,838 --> 01:11:08,872 THANK YOU. 1881 01:11:08,872 --> 01:11:09,440 >> RIGHT. 1882 01:11:09,440 --> 01:11:11,742 YEAH. 1883 01:11:11,742 --> 01:11:14,044 I MEAN, THESE ARE VERY COMPLEX 1884 01:11:14,044 --> 01:11:19,216 AND EXPENSIVE STUDIES. 1885 01:11:19,216 --> 01:11:20,017 >> QUESTION. 1886 01:11:20,017 --> 01:11:22,753 DO THEY EVER REPORT THE SAME 1887 01:11:22,753 --> 01:11:24,088 PATIENT TWICE IN A SECOND -- WE 1888 01:11:24,088 --> 01:11:25,589 SEE THIS FROM TIME TO TIME. 1889 01:11:25,589 --> 01:11:27,524 SO DOES JOHN SMITH GET REPORTED 1890 01:11:27,524 --> 01:11:28,525 IN ONE PUBLICATION AND THEN AS 1891 01:11:28,525 --> 01:11:32,029 PART OF ANOTHER COHORT AN IN A 1892 01:11:32,029 --> 01:11:32,663 SECOND PUBLICATION? 1893 01:11:32,663 --> 01:11:36,166 >> SO YOU SEE PARTICIPANT 1894 01:11:36,166 --> 01:11:39,103 S3 FROM BRAINGATE, HE APPEARS IN 1895 01:11:39,103 --> 01:11:41,772 22 PUBLICATIONS. 1896 01:11:41,772 --> 01:11:41,972 YEAH. 1897 01:11:41,972 --> 01:11:48,178 I MEAN, YOU KNOW, SOME OF THESE 1898 01:11:48,178 --> 01:11:49,580 ARE -- SEVEN, EIGHT, NINE YEARS 1899 01:11:49,580 --> 01:11:50,114 BY NOW. 1900 01:11:50,114 --> 01:11:54,485 THEY ARE REPORTING DATA IN 1901 01:11:54,485 --> 01:11:55,252 DIFFERENT THINGS. 1902 01:11:55,252 --> 01:11:56,920 ONE IMPORTANT ASPECT OF DATA 1903 01:11:56,920 --> 01:11:59,957 THAT I WISH WE HAD MORE 1904 01:11:59,957 --> 01:12:03,127 INFORMATION IS SIGNAL 1905 01:12:03,127 --> 01:12:06,497 DEGRADATION, THAT'S A BUNCH OF 1906 01:12:06,497 --> 01:12:07,164 TIME, RIGHT? 1907 01:12:07,164 --> 01:12:08,365 BUT WE DON'T GET -- RIGHT? 1908 01:12:08,365 --> 01:12:10,401 SO WE HAD TO TAKE THE LONGEVITY, 1909 01:12:10,401 --> 01:12:12,503 YOU KNOW, THE IMPLANT AS A PROXY 1910 01:12:12,503 --> 01:12:14,605 FOR THAT. 1911 01:12:14,605 --> 01:12:17,341 >> PEPE, KATHLEEN HAS AN ONLINE 1912 01:12:17,341 --> 01:12:17,608 QUESTION. 1913 01:12:17,608 --> 01:12:19,209 >> YES, PLEASE. 1914 01:12:19,209 --> 01:12:21,178 >> HI. 1915 01:12:21,178 --> 01:12:22,146 I HAVE TWO QUICK QUESTIONS. 1916 01:12:22,146 --> 01:12:24,515 THIS IS REALLY VERY INTERESTING. 1917 01:12:24,515 --> 01:12:27,050 I'M CURIOUS, IS THERE ANY MOVE 1918 01:12:27,050 --> 01:12:29,353 TO MAKE A DATABASE OR SOME WAY 1919 01:12:29,353 --> 01:12:31,655 TO COMBINE THIS INFORMATION 1920 01:12:31,655 --> 01:12:31,855 TO -- 1921 01:12:31,855 --> 01:12:32,523 >> GREAT QUESTION. 1922 01:12:32,523 --> 01:12:34,491 GIVE ME A FEW MINUTES AND I'LL 1923 01:12:34,491 --> 01:12:34,792 ANSWER IT. 1924 01:12:34,792 --> 01:12:35,492 >> OKAY. 1925 01:12:35,492 --> 01:12:38,862 AND THEN MY OTHER QUESTION IS, 1926 01:12:38,862 --> 01:12:44,535 SO THIS IS REALLY FOR PEOPLE WHO 1927 01:12:44,535 --> 01:12:45,969 HAVE SPECIFIC KINDS OF LESIONS? 1928 01:12:45,969 --> 01:12:48,806 I GUESS I'M THINKING IN KIND OF 1929 01:12:48,806 --> 01:12:51,008 MY MS PART OF MY BRAIN IS 1930 01:12:51,008 --> 01:12:52,409 THINKING, COULD YOU SEE THIS OR 1931 01:12:52,409 --> 01:12:53,510 FORESEE THIS BEING POSSIBLE FOR 1932 01:12:53,510 --> 01:12:56,013 PEOPLE WHO HAVE CONDITIONS LIKE 1933 01:12:56,013 --> 01:12:57,681 MS WHERE THE LESIONS EVOLVE BUT 1934 01:12:57,681 --> 01:12:59,283 ALSO SOME OF THEM DO STAY 1935 01:12:59,283 --> 01:13:04,788 PERMANENTLY? 1936 01:13:04,788 --> 01:13:06,723 >> GREAT QUESTION. 1937 01:13:06,723 --> 01:13:13,397 I THINK BCI IN -- COULD BE A 1938 01:13:13,397 --> 01:13:17,968 SOLUTION, BUT WE ARE REPORTING 1939 01:13:17,968 --> 01:13:23,207 HERE ON SEI, MOTOR NEURON, 1940 01:13:23,207 --> 01:13:23,440 STROKE. 1941 01:13:23,440 --> 01:13:25,075 >> I KNOW IT'S EARLY DAYS BUT 1942 01:13:25,075 --> 01:13:26,176 JUST TRYING TO THINK THROUGH 1943 01:13:26,176 --> 01:13:31,648 WHAT THAT MIGHT MEAN FOR 1944 01:13:31,648 --> 01:13:31,915 PEOPLE -- 1945 01:13:31,915 --> 01:13:35,486 >> I WILL COMMENT ON THAT LATER. 1946 01:13:35,486 --> 01:13:36,220 SO ONE OF THE FINDS IS THAT 1947 01:13:36,220 --> 01:13:38,522 WOMEN ARE UNDERREPRESENTED IN 1948 01:13:38,522 --> 01:13:39,089 THESE CLINICAL TRIALS. 1949 01:13:39,089 --> 01:13:40,157 EVEN WHEN YOU ACCOUNT FOR 1950 01:13:40,157 --> 01:13:46,330 DIFFERENCES IN DISEASE OR -- INY 1951 01:13:46,330 --> 01:13:47,598 BASED PREVALENCE. 1952 01:13:47,598 --> 01:13:50,501 SO ON THE LEFT YOU CAN SEE THAT 1953 01:13:50,501 --> 01:13:51,602 73% OF THE PARTICIPANTS ARE 1954 01:13:51,602 --> 01:13:53,237 MALES AND ONLY 16% ARE FEMALES. 1955 01:13:53,237 --> 01:13:54,638 THERE ARE SEVEN THAT WE DON'T 1956 01:13:54,638 --> 01:13:56,406 KNOW, THIS WAS NOT SHARED WITH 1957 01:13:56,406 --> 01:13:57,007 US. 1958 01:13:57,007 --> 01:14:02,646 SO EVEN WHEN YOU ACCOUNT FOR 1959 01:14:02,646 --> 01:14:04,681 THE -- YOU CAN SEE THERE'S ONLY 1960 01:14:04,681 --> 01:14:06,984 ONE IN HERE, ONE WOMAN WITH SEI, 1961 01:14:06,984 --> 01:14:10,587 A FEW WITH ALS, MORE FEMALES 1962 01:14:10,587 --> 01:14:11,154 WITH STROKE. 1963 01:14:11,154 --> 01:14:13,991 NOW, YOU CAN SEE THE AGE RANGE 1964 01:14:13,991 --> 01:14:15,526 BETWEEN 22 AND 45. 1965 01:14:15,526 --> 01:14:18,128 THERE ARE 26 MEN AND ONLY 1966 01:14:18,128 --> 01:14:19,663 1 WOMAN, RIGHT? 1967 01:14:19,663 --> 01:14:22,599 WHICH FOLLOWS HISTORIC TRENDS OF 1968 01:14:22,599 --> 01:14:25,102 WOMEN IN REPRODUCTIVE YEARS HAVE 1969 01:14:25,102 --> 01:14:26,169 BEEN EXCLUDED FROM CLINICAL 1970 01:14:26,169 --> 01:14:30,140 TRIALS. 1971 01:14:30,140 --> 01:14:30,574 WHY? 1972 01:14:30,574 --> 01:14:32,109 WELL, BEFORE I TRY TO ANSWER 1973 01:14:32,109 --> 01:14:34,411 THAT, AT LEAST PARTIALLY, YOU 1974 01:14:34,411 --> 01:14:37,247 KNOW, ANOTHER OBSERVATION THAT 1975 01:14:37,247 --> 01:14:41,084 IF THEY ARE RECRUITED, THEY ARE 1976 01:14:41,084 --> 01:14:43,921 RECRUITED LATER IN LIFE. 1977 01:14:43,921 --> 01:14:46,089 SO THE MEAN IMPLANTATION AGE FOR 1978 01:14:46,089 --> 01:14:50,527 MEN IS 44, AND FOR WOMEN, IT'S 1979 01:14:50,527 --> 01:14:50,894 52 YEARS. 1980 01:14:50,894 --> 01:14:52,429 WHEN THEY'RE RECRUITED, THEY 1981 01:14:52,429 --> 01:14:57,868 COME LATER. 1982 01:14:57,868 --> 01:14:58,969 SO WHAT ARE THE POTENTIAL CAUSES 1983 01:14:58,969 --> 01:14:59,736 FOR THAT? 1984 01:14:59,736 --> 01:15:02,239 LET'S START WITH THE REGULATORY 1985 01:15:02,239 --> 01:15:02,472 ONES. 1986 01:15:02,472 --> 01:15:05,108 SO THE FDA GUIDANCE ON IMPLANTED 1987 01:15:05,108 --> 01:15:06,610 BRAIN-COMPUTER INTERFACES, WHICH 1988 01:15:06,610 --> 01:15:10,113 WAS UPDATED RECENTLY IN 2021, 1989 01:15:10,113 --> 01:15:11,315 RECOMMENDS THE EXCLUSION OF 1990 01:15:11,315 --> 01:15:14,618 THOSE WHO ARE PREGNANT OR OF 1991 01:15:14,618 --> 01:15:16,119 CHILD-BEARING POTENTIAL AND NOT 1992 01:15:16,119 --> 01:15:18,855 USING CONTRACEPTION. 1993 01:15:18,855 --> 01:15:22,359 YOU KNOW, YOU'RE A P.I., YOU'RE 1994 01:15:22,359 --> 01:15:23,327 GOING TO TAKE THAT 1995 01:15:23,327 --> 01:15:24,194 RECOMMENDATION MOST LIKELY. 1996 01:15:24,194 --> 01:15:25,062 NOW THAT DOESN'T MEAN THAT THE 1997 01:15:25,062 --> 01:15:26,263 FDA IS NOT THINKING ABOUT IT. 1998 01:15:26,263 --> 01:15:27,898 THEY HAVE BEEN THINKING ABOUT IT 1999 01:15:27,898 --> 01:15:29,866 SINCE 2018. 2000 01:15:29,866 --> 01:15:33,370 THERE'S A REPORT, YOU KNOW, IN A 2001 01:15:33,370 --> 01:15:37,608 DRAFT DOCUMENT DISCUSSING THE 2002 01:15:37,608 --> 01:15:40,777 ACT OF INCLUDING PREGNANT WOMEN 2003 01:15:40,777 --> 01:15:42,412 IN CLINICAL TRIALS AND THERE'S A 2004 01:15:42,412 --> 01:15:47,684 TASK FORCE BY NICHD ON RESEARCH 2005 01:15:47,684 --> 01:15:49,152 SPECIFIC TO PREGNANT WOMEN AND 2006 01:15:49,152 --> 01:15:52,789 LACTATING WOMEN. 2007 01:15:52,789 --> 01:15:54,958 THAT RECOMMENDED IN 2018 2008 01:15:54,958 --> 01:15:56,259 REMOVING REGULATORY BARRIERS TO 2009 01:15:56,259 --> 01:15:57,327 RESEARCH IN PREGNANT WOMEN. 2010 01:15:57,327 --> 01:16:02,265 SO WE NEED TO DO MORE TO REALLY, 2011 01:16:02,265 --> 01:16:04,768 YOU KNOW, IN A RESPONSIBLE 2012 01:16:04,768 --> 01:16:05,869 MANNER REMOVE THOSE BARRIERS. 2013 01:16:05,869 --> 01:16:09,139 >> JUST REAL QUICK, NICHD IS 2014 01:16:09,139 --> 01:16:10,440 HUGE IN PRGLAC. 2015 01:16:10,440 --> 01:16:13,810 THAT IS A MAJOR PART OF OUR WORK 2016 01:16:13,810 --> 01:16:16,113 AND OUR COLLEAGUES IN OTHER 2017 01:16:16,113 --> 01:16:17,748 BRANCHES OF DER. 2018 01:16:17,748 --> 01:16:19,816 >> AND THERE'S A REPORT OUT 2019 01:16:19,816 --> 01:16:23,120 THERE THAT -- YEAH. 2020 01:16:23,120 --> 01:16:25,222 NOW, IT COULD BE ALSO THAT WOMEN 2021 01:16:25,222 --> 01:16:32,195 ARE MORE RISK AVERSIVE. 2022 01:16:32,195 --> 01:16:34,231 PARTICULARLY CARDIAC -- REVIEW 2023 01:16:34,231 --> 01:16:36,767 THEIR PARTICIPATION. 2024 01:16:36,767 --> 01:16:38,835 ANOTHER POSSIBLE CAUSE THAT WE 2025 01:16:38,835 --> 01:16:41,805 CAN SEE IS THAT WOMEN ARE MORE 2026 01:16:41,805 --> 01:16:44,307 PRONE TO PARTNER ABANDONMENT 2027 01:16:44,307 --> 01:16:45,609 AFTER A SERIOUS ILLNESS. 2028 01:16:45,609 --> 01:16:47,377 WITH WOMEN BEING LEFT 2029 01:16:47,377 --> 01:16:48,345 PARTNERLESS SIX TIMES MORE OFTEN 2030 01:16:48,345 --> 01:16:49,746 THAN MEN. 2031 01:16:49,746 --> 01:16:52,149 AND WE ALSO KNOW THAT 2032 01:16:52,149 --> 01:16:54,217 PARTNERLESS WOMEN HAVE REDUCED 2033 01:16:54,217 --> 01:16:55,118 PARTICIPATION IN CLINICAL 2034 01:16:55,118 --> 01:16:56,953 TRIALS, SO THAT MAY ALSO EXPLAIN 2035 01:16:56,953 --> 01:17:03,393 SOME OF THESE. 2036 01:17:03,393 --> 01:17:06,897 NOW YOU CONSIDER THE LEVEL OF 2037 01:17:06,897 --> 01:17:07,664 COMMITMENT OF PARTICIPANTS, 2038 01:17:07,664 --> 01:17:07,998 RIGHT? 2039 01:17:07,998 --> 01:17:09,399 IT'S TALKING ABOUT THREE TO FOUR 2040 01:17:09,399 --> 01:17:10,934 TIMES A WEEK, AT LEAST SEVERAL 2041 01:17:10,934 --> 01:17:12,135 HOURS, YOU NEED TO GET THERE, 2042 01:17:12,135 --> 01:17:14,404 YOU NEED TO GO BACK HOME. 2043 01:17:14,404 --> 01:17:19,142 AND SO IT'S A FULL-TIME JOB 2044 01:17:19,142 --> 01:17:20,877 BASICALLY. 2045 01:17:20,877 --> 01:17:22,746 WHEN YOU DON'T HAVE SUPPORT AT 2046 01:17:22,746 --> 01:17:26,983 HOME, EVEN IF YOU ARE PROVIDING 2047 01:17:26,983 --> 01:17:28,518 A FACILITY TO PARTICIPATE IN A 2048 01:17:28,518 --> 01:17:32,322 CLINICAL TRIAL, THAT NO ONE WILL 2049 01:17:32,322 --> 01:17:32,789 MAKE IT. 2050 01:17:32,789 --> 01:17:34,324 SO WE NEED TO PROVIDE BROAD 2051 01:17:34,324 --> 01:17:35,625 SUPPORT FOR THE PARTICIPANTS, 2052 01:17:35,625 --> 01:17:39,463 PARTICULARLY FOR WOMEN, THAT 2053 01:17:39,463 --> 01:17:40,330 GOES BEYOND JUST THE CLINICAL 2054 01:17:40,330 --> 01:17:48,772 TRIAL. 2055 01:17:48,772 --> 01:17:50,040 >> WHEN YOU'RE CONSIDERING THE 2056 01:17:50,040 --> 01:17:50,907 SEX DISPARITIES, YOU'RE 2057 01:17:50,907 --> 01:17:54,077 CONTROLLING FOR THE INCIDENCE OF 2058 01:17:54,077 --> 01:17:55,612 LIKE UNDER 30 SPINAL CORD 2059 01:17:55,612 --> 01:17:55,912 INJURIES -- 2060 01:17:55,912 --> 01:18:00,650 >> YEAH, YEAH, THAT WAS THE -- I 2061 01:18:00,650 --> 01:18:04,121 SHOWED BEFORE. 2062 01:18:04,121 --> 01:18:07,090 NOW, LET'S TALK ABOUT DATA 2063 01:18:07,090 --> 01:18:08,525 SHARING BECAUSE THAT'S A REALLY 2064 01:18:08,525 --> 01:18:11,461 IMPORTANT ONE. 2065 01:18:11,461 --> 01:18:14,831 SO AS OF DECEMBER, THERE ARE 2066 01:18:14,831 --> 01:18:15,966 ABOUT 2380 MONTHS OF DATA THAT 2067 01:18:15,966 --> 01:18:18,668 HAVE BEEN COLLECTED. 2068 01:18:18,668 --> 01:18:20,971 BRAINGATE HAS ACCRUED 21% OF THE 2069 01:18:20,971 --> 01:18:25,442 TOTAL, RIGHT? 2070 01:18:25,442 --> 01:18:27,377 SOME PARTICIPANTS, YEARS OF 2071 01:18:27,377 --> 01:18:28,578 DATA, RIGHT? 2072 01:18:28,578 --> 01:18:30,013 OF COURSE WE NEED TO BE 2073 01:18:30,013 --> 01:18:32,649 CONCERNED WITH THE PRIVACY AND 2074 01:18:32,649 --> 01:18:34,184 THE POTENTIAL MISUSE OF THE 2075 01:18:34,184 --> 01:18:36,052 DATA, RIGHT? 2076 01:18:36,052 --> 01:18:39,055 WHICH CAN LIMIT, COULD BE ONE 2077 01:18:39,055 --> 01:18:40,257 EXPLANATION FOR LIMITING DATA 2078 01:18:40,257 --> 01:18:41,525 SHARING. 2079 01:18:41,525 --> 01:18:44,261 BUT WHAT WE FOUND IS THAT ONLY 2080 01:18:44,261 --> 01:18:46,863 39% OF THESE PUBLICATIONS 2081 01:18:46,863 --> 01:18:49,266 REPORTING ON PARTICIPANT DATA 2082 01:18:49,266 --> 01:18:50,901 INCLUDED DATA SHARING STATEMENT, 2083 01:18:50,901 --> 01:18:52,435 AND ONLY ONE-THIRD OF THEM 2084 01:18:52,435 --> 01:18:54,504 ACTUALLY HAD LINKS TO GET ACCESS 2085 01:18:54,504 --> 01:19:00,076 TO THE DATA. 2086 01:19:00,076 --> 01:19:01,711 NOW, HAVING A DATA SHARING 2087 01:19:01,711 --> 01:19:02,579 STATEMENT DOESN'T MEAN THAT THE 2088 01:19:02,579 --> 01:19:04,781 DATA WILL BE SHARED. 2089 01:19:04,781 --> 01:19:08,051 ACTUALLY, I TRIED TO GAIN ACCESS 2090 01:19:08,051 --> 01:19:09,820 TO -- I CONTACTED ONE OF THE 2091 01:19:09,820 --> 01:19:14,057 GROUPS TO GET ACCESS TO DATA FOR 2092 01:19:14,057 --> 01:19:18,628 RESEARCH, AND I OFFERED TO SIGN 2093 01:19:18,628 --> 01:19:19,963 THE AGREEMENT AND COMPLY WITH 2094 01:19:19,963 --> 01:19:21,164 THE REGULATIONS AND I WAS 2095 01:19:21,164 --> 01:19:21,932 DECLINED. 2096 01:19:21,932 --> 01:19:27,070 SO SOMEBODY WORKING WITH BCI -- 2097 01:19:27,070 --> 01:19:28,705 GET ACCESS TO DATA, I THINK IT'S 2098 01:19:28,705 --> 01:19:30,340 A LOST OPPORTUNITY FOR THIS. 2099 01:19:30,340 --> 01:19:31,975 NOW, YOU KNOW, I NEED TO 2100 01:19:31,975 --> 01:19:34,611 REITERATE THAT DATA SHARING -- 2101 01:19:34,611 --> 01:19:36,146 THERE ARE PRIVACY 2102 01:19:36,146 --> 01:19:36,913 CONSIDERATIONS, THERE ARE A 2103 01:19:36,913 --> 01:19:39,749 LIMITED NUMBER OF 2104 01:19:39,749 --> 01:19:42,586 PARTICIPANTS -- NORMALLY ON TV 2105 01:19:42,586 --> 01:19:44,054 OR IN THE COVER. 2106 01:19:44,054 --> 01:19:46,690 AND MOST OF THEM, I THINK THEY 2107 01:19:46,690 --> 01:19:47,224 ARE FORTHCOMING. 2108 01:19:47,224 --> 01:19:49,292 THEY WANT TO HELP SCIENCE. 2109 01:19:49,292 --> 01:19:50,427 THEY ARE PARTICIPATING BECAUSE 2110 01:19:50,427 --> 01:19:54,664 THEY WANT TO HELP OTHER PEOPLE. 2111 01:19:54,664 --> 01:19:55,999 SO WE NEED TO TAKE THAT INTO 2112 01:19:55,999 --> 01:19:57,067 ACCOUNT. 2113 01:19:57,067 --> 01:19:59,903 AND OF COURSE ONE PROBLEM WITH 2114 01:19:59,903 --> 01:20:00,871 THIS IS THAT WE DON'T KNOW WHAT 2115 01:20:00,871 --> 01:20:04,941 WOULD BE THE POTENTIAL IMPACT ON 2116 01:20:04,941 --> 01:20:09,546 DISCLOSING THEIR IDENTITY AND 2117 01:20:09,546 --> 01:20:12,949 DATA CLINICAL ASSESSMENT IN 2118 01:20:12,949 --> 01:20:16,653 TERMS OF HEALTH INSURANCE -- 2119 01:20:16,653 --> 01:20:18,655 GUIDELINES TO AVOID PUTTING THEM 2120 01:20:18,655 --> 01:20:20,156 IN JEOPARDY IN TERMS OF HEALTH 2121 01:20:20,156 --> 01:20:23,894 INSURANCE. 2122 01:20:23,894 --> 01:20:25,295 NOW ONE QUESTION -- SO AGAIN, 2123 01:20:25,295 --> 01:20:28,665 WHAT FUNDAMENTAL QUESTIONS WE 2124 01:20:28,665 --> 01:20:30,000 COULD ASK TODAY, RIGHT, IF WE 2125 01:20:30,000 --> 01:20:32,068 HAD AN ANSWER, IF WE HAD SK TESS 2126 01:20:32,068 --> 01:20:36,139 TO THESE DATA FROM THE 67 2127 01:20:36,139 --> 01:20:38,842 PARTICIPANTS? 2128 01:20:38,842 --> 01:20:40,810 SO WHICH IT IMPROVED THE MACHINE 2129 01:20:40,810 --> 01:20:42,445 LEARNING OR A.I. ALGORITHMS FOR 2130 01:20:42,445 --> 01:20:42,879 SURE. 2131 01:20:42,879 --> 01:20:46,383 WE CAN TRY DIFFERENT TECHNIQUES 2132 01:20:46,383 --> 01:20:47,450 THAT ARE NOT POSSIBLE WHEN YOU 2133 01:20:47,450 --> 01:20:48,785 DON'T HAVE ENOUGH DATA. 2134 01:20:48,785 --> 01:20:50,954 67 IS NOT A LOT OF DATA BUT 2135 01:20:50,954 --> 01:20:51,254 STILL. 2136 01:20:51,254 --> 01:20:54,357 WE COULD UNDERSTAND BETTER AND 2137 01:20:54,357 --> 01:20:56,760 IMPROVE THE ELECTRODE AND SIGNAL 2138 01:20:56,760 --> 01:20:57,827 LONGEVITY, IMPROVE RELIABILITY 2139 01:20:57,827 --> 01:21:01,231 OF THESE SYSTEMS, UNDERSTAND THE 2140 01:21:01,231 --> 01:21:03,400 VARIANCE. 2141 01:21:03,400 --> 01:21:07,671 CERTAINLY BENCHMARKING AND 2142 01:21:07,671 --> 01:21:09,739 STANDARDIZATION EFFORTS ARE 2143 01:21:09,739 --> 01:21:10,507 NEEDED HERE. 2144 01:21:10,507 --> 01:21:12,575 THESE ARE JUST SOME. 2145 01:21:12,575 --> 01:21:15,645 I PREF REFER YOU TO THE PUBLICAN 2146 01:21:15,645 --> 01:21:17,514 TO READ A LIST OF THINGS. 2147 01:21:17,514 --> 01:21:19,582 WE NEED TO ALSO BE CONCERNED 2148 01:21:19,582 --> 01:21:21,351 WITH DATA MASKING AND OTHER 2149 01:21:21,351 --> 01:21:25,255 FORMS OF ANONYMIZATION OF 2150 01:21:25,255 --> 01:21:26,022 DE-IDENTIFYING THE DATA BUT WHO 2151 01:21:26,022 --> 01:21:26,890 PAYS FOR IT? 2152 01:21:26,890 --> 01:21:32,162 WE CAN PUT A DATA MANAGEMENT 2153 01:21:32,162 --> 01:21:35,098 PLAN IN THE GRANT BUT IT ONLY 2154 01:21:35,098 --> 01:21:35,966 GOES SO FAR. 2155 01:21:35,966 --> 01:21:38,601 AGAIN, WE HAVE 21 GROUPS DOING 2156 01:21:38,601 --> 01:21:41,771 THEIR OWN THING IN MOST CASES. 2157 01:21:41,771 --> 01:21:45,709 HOW WE HARMONIZE THESE ASSETS? 2158 01:21:45,709 --> 01:21:49,012 CONSIDER FROM THESE 67 2159 01:21:49,012 --> 01:21:51,915 PARTICIPANTS, 165 PUBLICATIONS, 2160 01:21:51,915 --> 01:21:54,050 FOR TOTAL REPORTED DATA, WE 2161 01:21:54,050 --> 01:21:56,686 FOUND MORE THAN 100 METRICS OF 2162 01:21:56,686 --> 01:21:57,420 PERFORMANCE. 2163 01:21:57,420 --> 01:21:58,421 100. 2164 01:21:58,421 --> 01:22:01,057 THERE IS NO HUB TO REALLY 2165 01:22:01,057 --> 01:22:02,459 COMPARE OR MAKE SENSE OF THAT. 2166 01:22:02,459 --> 01:22:03,994 WE NEED METRICS, WE NEED 2167 01:22:03,994 --> 01:22:10,100 STANDARDS. 2168 01:22:10,100 --> 01:22:11,234 NOW, WE DON'T THINK ABOUT THIS 2169 01:22:11,234 --> 01:22:12,669 BUT WHAT'S THE COST OF JUST 2170 01:22:12,669 --> 01:22:15,939 RETAINING DATA, RIGHT? 2171 01:22:15,939 --> 01:22:18,541 SO IF THE DATA IS CONSIDERED 2172 01:22:18,541 --> 01:22:21,378 PART OF A PATIENT'S MEDICAL 2173 01:22:21,378 --> 01:22:23,046 RECORD, STATE LAWS REQUIRE FIVE 2174 01:22:23,046 --> 01:22:26,416 TO 10 YEAR RETENTION POST 2175 01:22:26,416 --> 01:22:26,683 TREATMENT. 2176 01:22:26,683 --> 01:22:30,253 BUT A HIGH-DENSITY IBCI RECORDED 2177 01:22:30,253 --> 01:22:33,356 THREE TIMES A WEEK FOR, YOU 2178 01:22:33,356 --> 01:22:35,525 KNOW, HOURS, IT CAN MEAN ABOUT 2179 01:22:35,525 --> 01:22:37,727 400 GIGABYTES PER DAY WHICH 2180 01:22:37,727 --> 01:22:39,596 WOULD ADD HUNDREDS OF DOLLARS A 2181 01:22:39,596 --> 01:22:41,965 MONTH FOR THE COST OF COMPLYING 2182 01:22:41,965 --> 01:22:43,767 WITH THE HIPAA, YOU KNOW, DATA 2183 01:22:43,767 --> 01:22:46,669 MANAGEMENT. 2184 01:22:46,669 --> 01:22:48,138 THAT DOESN'T INCLUDE ALL THE 2185 01:22:48,138 --> 01:22:54,911 COSTS OF THE SERVERS, THE COST 2186 01:22:54,911 --> 01:23:01,384 OF THE ELECTRICITY AND ALL THAT. 2187 01:23:01,384 --> 01:23:02,685 NOW THE CURRENT SYSTEMS ARE 2188 01:23:02,685 --> 01:23:06,189 LIMITED TO A FEW PATIENTS WHO 2189 01:23:06,189 --> 01:23:07,824 LIVE NEAR RESEARCH FACILITIES. 2190 01:23:07,824 --> 01:23:09,993 IAN, MY COLLABORATOR, CO-AUTHOR, 2191 01:23:09,993 --> 01:23:12,962 WAS LUCKY, HE WAS NEARBY, AND HE 2192 01:23:12,962 --> 01:23:17,667 KNEW A PHYSICIAN WHO WAS -- WITH 2193 01:23:17,667 --> 01:23:18,668 THE TECHNOLOGY. 2194 01:23:18,668 --> 01:23:22,272 SO HE WAS ABLE TO ENROLL, BUT 2195 01:23:22,272 --> 01:23:26,843 FOR MANY THAT'S NOT POSSIBLE. 2196 01:23:26,843 --> 01:23:28,144 NOW, ANOTHER VERY IMPORTANT 2197 01:23:28,144 --> 01:23:29,379 CHALLENGE IS LACK OF ACCESS 2198 01:23:29,379 --> 01:23:30,613 AFTER THE END OF THE CLINICAL 2199 01:23:30,613 --> 01:23:35,919 TRIAL. 2200 01:23:35,919 --> 01:23:40,323 SO IT COULD BE REGULATORY ISSUES 2201 01:23:40,323 --> 01:23:43,259 THERE OR CHALLENGES, IRB, IDE. 2202 01:23:43,259 --> 01:23:46,529 I MEAN, WE COULD RENEW IRB, WE 2203 01:23:46,529 --> 01:23:48,398 COULD PROBABLY PROLONG IDEs 2204 01:23:48,398 --> 01:23:49,399 BUT IT'S STILL SOMETHING TO 2205 01:23:49,399 --> 01:23:49,933 CONSIDER. 2206 01:23:49,933 --> 01:23:52,368 WE NEED TO MAINTAIN THE FUNCTION 2207 01:23:52,368 --> 01:23:54,504 AND THE CLINICAL SUPPORT FOR THE 2208 01:23:54,504 --> 01:23:56,372 PARTICIPANTS. 2209 01:23:56,372 --> 01:23:58,575 AND IN A HOLISTIC MANNER. 2210 01:23:58,575 --> 01:24:00,610 WE NEED TO PROVIDE SYSTEM 2211 01:24:00,610 --> 01:24:03,913 MAINTENANCE AND REPAIR SO EVEN 2212 01:24:03,913 --> 01:24:04,781 REPLACE THE SYSTEM. 2213 01:24:04,781 --> 01:24:06,950 NOW THESE SYSTEMS, HERE WE HAVE 2214 01:24:06,950 --> 01:24:12,122 FOUR MAIN DIFFERENT ONES. 2215 01:24:12,122 --> 01:24:13,656 INTEROPERABILITY WOULD NOT WORK. 2216 01:24:13,656 --> 01:24:14,491 EVEN CONNECTION INVENTORIES, WE 2217 01:24:14,491 --> 01:24:15,725 HAVE TO DEAL WITH JUST 2218 01:24:15,725 --> 01:24:18,561 CONNECTORS SO THAT WE CAN 2219 01:24:18,561 --> 01:24:22,165 REPLACE. 2220 01:24:22,165 --> 01:24:23,833 SO THIS REALLY LACK OF ENOUGH 2221 01:24:23,833 --> 01:24:26,136 GRANT AND PRIVATE FUNDING, 2222 01:24:26,136 --> 01:24:27,203 ALTHOUGH THERE ARE INVESTMENTS 2223 01:24:27,203 --> 01:24:29,305 BUT WE'RE TALKING ABOUT END OF 2224 01:24:29,305 --> 01:24:29,939 CLINICAL TRIAL. 2225 01:24:29,939 --> 01:24:31,708 MAYBE THE TEAM IS NOT AVAILABLE, 2226 01:24:31,708 --> 01:24:33,243 MAYBE THE P.I. RELOCATES AND 2227 01:24:33,243 --> 01:24:34,010 THAT HAS HAPPENED. 2228 01:24:34,010 --> 01:24:36,412 IT HAPPENED TO IAN, THE P.I. 2229 01:24:36,412 --> 01:24:39,182 MOVED TO A DIFFERENT UNIVERSITY 2230 01:24:39,182 --> 01:24:40,116 SO WHAT DO YOU DO? 2231 01:24:40,116 --> 01:24:41,551 OR THE GRANT ENDS, WHAT DO YOU 2232 01:24:41,551 --> 01:24:44,621 DO? 2233 01:24:44,621 --> 01:24:45,889 COULD BE RELOCATION, I MENTIONED 2234 01:24:45,889 --> 01:24:47,357 THAT, OF THE PATIENT OR THE 2235 01:24:47,357 --> 01:24:48,558 P.I., AND THERE ARE ALSO LEGAL 2236 01:24:48,558 --> 01:24:49,359 AND OTHER CONSIDERATIONS. 2237 01:24:49,359 --> 01:24:50,860 SO THERE ARE MANY CHALLENGES 2238 01:24:50,860 --> 01:24:52,295 HERE THAT WE NEED TO BE 2239 01:24:52,295 --> 01:24:56,099 CONCERNED ABOUT. 2240 01:24:56,099 --> 01:24:57,934 WHAT IF THE COMPANY GOES OUT OF 2241 01:24:57,934 --> 01:24:58,434 BUSINESS? 2242 01:24:58,434 --> 01:25:00,503 AGAIN I'M RAISING THE ISSUE OF 2243 01:25:00,503 --> 01:25:01,471 INTEROPERABILITY BECAUSE YOU 2244 01:25:01,471 --> 01:25:02,805 CANNOT REPLACE SYSTEMS AND THAT 2245 01:25:02,805 --> 01:25:06,209 HAS HAPPENED, AND THERE ARE ALSO 2246 01:25:06,209 --> 01:25:08,011 SOME CLEAR EFFORTS BY SOME IN 2247 01:25:08,011 --> 01:25:12,715 THE COMMUNITY TO TAKE CARE OF 2248 01:25:12,715 --> 01:25:16,386 THE PARTICIPANT ONCE THE COMPANY 2249 01:25:16,386 --> 01:25:17,153 IS OUT. 2250 01:25:17,153 --> 01:25:18,254 SO THAT'S SOMETHING THAT 2251 01:25:18,254 --> 01:25:24,594 REQUIRES FUNDING TO KEEP 2252 01:25:24,594 --> 01:25:25,695 SUPPORT. 2253 01:25:25,695 --> 01:25:27,564 AND WE NEED SOME NEWS ABOUT AN 2254 01:25:27,564 --> 01:25:28,731 EFFORT, WHAT TO DO AFTER THE END 2255 01:25:28,731 --> 01:25:30,200 OF THE CLINICAL TRIAL, RIGHT, 2256 01:25:30,200 --> 01:25:33,136 THAT JUST CAME OUT YESTERDAY. 2257 01:25:33,136 --> 01:25:33,570 , I 2258 01:25:33,570 --> 01:25:35,905 BELIEVE, FROM HARVARD. 2259 01:25:35,905 --> 01:25:36,239 YEAH. 2260 01:25:36,239 --> 01:25:38,074 >> I'LL JUST SAY, I'M JUST GOING 2261 01:25:38,074 --> 01:25:41,678 TO -- THIS IS PRESCIENT. 2262 01:25:41,678 --> 01:25:44,514 WHEN GIRON WAS IMPLANTING STEM 2263 01:25:44,514 --> 01:25:45,715 CELLS AND THE FDA REQUIRED WAS 2264 01:25:45,715 --> 01:25:47,951 IT A 10 OR 20-YEAR FOLLOW-UP 2265 01:25:47,951 --> 01:25:49,118 PERIOD, AND THEN THE COMPANY 2266 01:25:49,118 --> 01:25:50,320 BOTTOMED OUT AND THE PATIENTS 2267 01:25:50,320 --> 01:25:51,854 HAVE CELLS IN THEIR BRAIN. 2268 01:25:51,854 --> 01:25:53,056 WHO'S GOING TO PLAY WITH THAT? 2269 01:25:53,056 --> 01:25:55,024 EVERYONE IS DOING THEIR BEST. 2270 01:25:55,024 --> 01:25:55,925 BUT THE RESOURCES WERE NOT 2271 01:25:55,925 --> 01:25:58,061 THERE. 2272 01:25:58,061 --> 01:25:59,729 THAT'S HOW CAPITALISM WORKS, I'M 2273 01:25:59,729 --> 01:25:59,929 TOLD. 2274 01:25:59,929 --> 01:26:00,396 >> YEAH. 2275 01:26:00,396 --> 01:26:02,932 I MEAN, ONE THOUGHT IS THAT -- 2276 01:26:02,932 --> 01:26:03,866 >> IT'S PRESCIENT. 2277 01:26:03,866 --> 01:26:05,134 >> ONE THOUGHT IS THAT EVERY 2278 01:26:05,134 --> 01:26:10,807 TIME A COMPANY OR PROVIDERRER OF 2279 01:26:10,807 --> 01:26:15,411 A SYSTEM -- COST IS ALLOCATING A 2280 01:26:15,411 --> 01:26:18,615 FUND THAT WILL BE USED LATER ON. 2281 01:26:18,615 --> 01:26:22,852 >> [INAUDIBLE] 2282 01:26:22,852 --> 01:26:25,488 >> SO IT'S A HUGE PROBLEM THAT 2283 01:26:25,488 --> 01:26:29,425 NEEDS A LOT OF THOUGHT AND 2284 01:26:29,425 --> 01:26:31,828 COORDINATION. 2285 01:26:31,828 --> 01:26:33,563 I MENTIONED THIS A BIT YESTERDAY 2286 01:26:33,563 --> 01:26:37,934 BUT WITH THE USE OF BCI IOT, THE 2287 01:26:37,934 --> 01:26:40,570 LINE BETWEEN A DEVICE OR 2288 01:26:40,570 --> 01:26:42,972 THERAPEUTIC PURPOSE VERSUS AN 2289 01:26:42,972 --> 01:26:44,607 ENHANCEMENT GETS BLURRED. 2290 01:26:44,607 --> 01:26:45,942 RIGHT? 2291 01:26:45,942 --> 01:26:48,578 AND YOU KNOW, THERE'S SOME 2292 01:26:48,578 --> 01:26:49,646 CONVERSATION IN THE LITERATURE 2293 01:26:49,646 --> 01:26:51,648 AND THIS IS ONE OF THEM, AND 2294 01:26:51,648 --> 01:26:56,686 THIS IS IN QUOTES, THIS IS NOT 2295 01:26:56,686 --> 01:27:01,724 MINE, IF YOU HAVE A PERSON THAT 2296 01:27:01,724 --> 01:27:05,862 DOES NOT DARE TO -- THE IBC WILL 2297 01:27:05,862 --> 01:27:07,630 BE AB ENHANCEMENT. 2298 01:27:07,630 --> 01:27:10,566 HOW YOU COMPARE THE REGULATION 2299 01:27:10,566 --> 01:27:12,669 IS SAFETY VERSUS BENEFIT, 2300 01:27:12,669 --> 01:27:17,040 EFFICACY. 2301 01:27:17,040 --> 01:27:18,775 BUT THEN HOW DO WE CONSIDER THE 2302 01:27:18,775 --> 01:27:20,643 EFFECT ON SOCIETY? 2303 01:27:20,643 --> 01:27:23,680 SO THE GOOD OF THE SYSTEM BEYOND 2304 01:27:23,680 --> 01:27:31,788 THE PARTICIPANT. 2305 01:27:31,788 --> 01:27:36,926 SO WE REALLY NEED STANDARDS FOR 2306 01:27:36,926 --> 01:27:40,430 DATA COLLECTION -- THERE WAS 2307 01:27:40,430 --> 01:27:43,733 JUST A RECENT FDA MEETING ON 2308 01:27:43,733 --> 01:27:47,203 DEVELOPING CLINICAL OUTCOMES 2309 01:27:47,203 --> 01:27:47,503 ASSESSMENTS. 2310 01:27:47,503 --> 01:27:50,740 CERTAINLY WE NEED TO STANDARDIZE 2311 01:27:50,740 --> 01:27:52,041 ENGINEERING METRICS SO THAT WE 2312 01:27:52,041 --> 01:27:55,011 CAN COMPARE AND ALSO PATIENTS' 2313 01:27:55,011 --> 01:27:55,345 METRICS. 2314 01:27:55,345 --> 01:27:57,747 AT THE MEETING, THERE WAS A 2315 01:27:57,747 --> 01:28:00,683 PROPOSAL FOR A UTILITY INDEX 2316 01:28:00,683 --> 01:28:02,885 WHERE THAT WILL MEASURE THE 2317 01:28:02,885 --> 01:28:03,920 USER'S ADOPTION OF THE 2318 01:28:03,920 --> 01:28:07,724 TECHNOLOGY. 2319 01:28:07,724 --> 01:28:11,227 AND SO ON AND SO FORTH. 2320 01:28:11,227 --> 01:28:11,761 STANDARDS FACILITATE DATA 2321 01:28:11,761 --> 01:28:12,995 SHARING AND BENCHMARKING. 2322 01:28:12,995 --> 01:28:13,663 YES, MICHELLE? 2323 01:28:13,663 --> 01:28:15,498 >> JUST HAD A QUICK QUESTION. 2324 01:28:15,498 --> 01:28:18,334 ARE THE 67 PARTICIPANTS REQUIRED 2325 01:28:18,334 --> 01:28:23,139 TO KEEP DIARIES KIND OF LIKE A 2326 01:28:23,139 --> 01:28:28,177 RECORD, KIND OF ALMOST LIKE WHAT 2327 01:28:28,177 --> 01:28:29,145 THE EXPERIENCE IS LIKE? 2328 01:28:29,145 --> 01:28:33,116 >> WELL, I'M SURE I WILL EXPECT 2329 01:28:33,116 --> 01:28:36,185 THEM TO TAKE NOTES OR, YOU KNOW, 2330 01:28:36,185 --> 01:28:43,726 DOCUMENT OR -- AND WE NEED MORE 2331 01:28:43,726 --> 01:28:45,395 OF THAT. 2332 01:28:45,395 --> 01:28:47,130 IAN WROTE ABOUT HIS EXPERIENCE, 2333 01:28:47,130 --> 01:28:49,332 WITH THE BCI PIONEERS, THEY 2334 01:28:49,332 --> 01:28:53,703 SHARE MORE FOR THE PEOPLE. 2335 01:28:53,703 --> 01:28:54,637 OTHER PEOPLE. 2336 01:28:54,637 --> 01:28:55,905 SO YEAH, WE NEED A REGISTRY. 2337 01:28:55,905 --> 01:29:00,176 WE HAVE A LOT OF DATA, AND WE 2338 01:29:00,176 --> 01:29:00,843 ARE COLLECTING THROUGH THIS 2339 01:29:00,843 --> 01:29:04,113 YEAR, SO WE ARE UPDATING THIS. 2340 01:29:04,113 --> 01:29:06,849 SOMEBODY NEEDS TO DO IT. 2341 01:29:06,849 --> 01:29:08,317 BUT, YOU KNOW, WE'RE TRYING TO 2342 01:29:08,317 --> 01:29:10,019 FIGURE OUT WHAT'S THE BEST WAY 2343 01:29:10,019 --> 01:29:12,655 TO DEVELOP SUCH REGISTRY AND 2344 01:29:12,655 --> 01:29:14,056 MAINTAIN IT. 2345 01:29:14,056 --> 01:29:17,160 WHEN SOMETHING THAT CAN 2346 01:29:17,160 --> 01:29:24,167 CONTINUE, THAT YOU KNOW, WILL BE 2347 01:29:24,167 --> 01:29:25,668 GOOD TO TRACK NOT ONLY THE 2348 01:29:25,668 --> 01:29:27,437 PARTICIPANTS, THE PERFORMANCE 2349 01:29:27,437 --> 01:29:28,871 DATA, ADVERSE EVENTS BUT ALSO 2350 01:29:28,871 --> 01:29:29,305 THE RESEARCH GROUPS. 2351 01:29:29,305 --> 01:29:30,072 THERE ARE NOT MANY. 2352 01:29:30,072 --> 01:29:31,941 WE NEED TO DO MORE WORK FOR 2353 01:29:31,941 --> 01:29:33,042 DEVELOPMENT, WE NEED TO DO 2354 01:29:33,042 --> 01:29:34,777 TRAINING, WE NEED TO DEVELOP THE 2355 01:29:34,777 --> 01:29:37,413 EXPERTS, THE ENGINEERS, THE 2356 01:29:37,413 --> 01:29:41,184 PEOPLE THAT WILL PRESCRIBE, 2357 01:29:41,184 --> 01:29:44,187 MAINTAIN SYSTEMS. 2358 01:29:44,187 --> 01:29:47,356 AGAIN, WHO'S GOING TO PAY FOR 2359 01:29:47,356 --> 01:29:48,191 IT? 2360 01:29:48,191 --> 01:29:49,659 -- NIH BUT THIS IS REALLY 2361 01:29:49,659 --> 01:29:55,565 IMPORTANT. 2362 01:29:55,565 --> 01:29:59,402 SO IT WILL ASSIST DEVELOPERS, 2363 01:29:59,402 --> 01:30:00,036 REGULATORS, THIRD PARTY PLAYERS 2364 01:30:00,036 --> 01:30:01,604 AND END USERS, THERE'S NO 2365 01:30:01,604 --> 01:30:02,672 QUESTION ABOUT IT. 2366 01:30:02,672 --> 01:30:06,742 SO LET ME JUMP TO MY NEXT TOPIC, 2367 01:30:06,742 --> 01:30:09,579 AND I'M HAPPY TO ENTERTAIN OTHER 2368 01:30:09,579 --> 01:30:10,012 QUESTIONS. 2369 01:30:10,012 --> 01:30:10,780 YEAH, I HAVE 20 MINUTES. 2370 01:30:10,780 --> 01:30:15,117 YOU HAVE A QUESTION? 2371 01:30:15,117 --> 01:30:19,655 >> TE TECHNOLOGY, THE DECODING 2372 01:30:19,655 --> 01:30:20,723 ALGORITHMS, THEY USED TO BE 2373 01:30:20,723 --> 01:30:22,692 BASED ON PRETTY FINITE MOVEMENT 2374 01:30:22,692 --> 01:30:26,662 OR SPEECH VOCABULARIES. 2375 01:30:26,662 --> 01:30:27,964 HAVE THEY GOTTEN TO THE POINT OF 2376 01:30:27,964 --> 01:30:29,265 BEING GENERATIVE SO THAT YOU CAN 2377 01:30:29,265 --> 01:30:30,933 GENERATE MOVEMENTS OR SPEECH 2378 01:30:30,933 --> 01:30:33,135 OUTSIDE OF THE TRAINED STATE 2379 01:30:33,135 --> 01:30:33,336 SPACE? 2380 01:30:33,336 --> 01:30:34,871 >> WHAT THEY ARE USING NOW, YOU 2381 01:30:34,871 --> 01:30:38,508 KNOW, IS MORE USE OF A.I., 2382 01:30:38,508 --> 01:30:41,777 RIGHT, SO IT'S GOING TO BE 2383 01:30:41,777 --> 01:30:42,011 MORE -- 2384 01:30:42,011 --> 01:30:44,313 >> SO THE SPEECH CAN ACTUALLY BE 2385 01:30:44,313 --> 01:30:45,515 LIE PHONETICALLY DEVELOPED AS 2386 01:30:45,515 --> 01:30:46,182 OPPOSED TO JUST -- 2387 01:30:46,182 --> 01:30:52,755 >> WELL, YEAH -- ABOUT SPEECH, 2388 01:30:52,755 --> 01:30:56,692 BUT AGAIN, A FEW EXAMPLES, 2389 01:30:56,692 --> 01:30:58,427 RIGHT? 2390 01:30:58,427 --> 01:31:00,630 WE DON'T KNOW THE EVOLUTION WITH 2391 01:31:00,630 --> 01:31:07,837 THE PROGRESSION OF DISEASE, 2392 01:31:07,837 --> 01:31:09,605 MEDICATION, MANY FACTORS, RIGHT? 2393 01:31:09,605 --> 01:31:12,675 SO LET ME GO, SO THIS IS 2394 01:31:12,675 --> 01:31:14,143 NONINVASIVE EEG, AND BASICALLY 2395 01:31:14,143 --> 01:31:17,713 WE WANTED TO PROVIDE A SOLUTION 2396 01:31:17,713 --> 01:31:19,882 THAT WAS NONINVASIVE FOR -- IN 2397 01:31:19,882 --> 01:31:25,588 THIS CASE FOR A PERSON WITH 2398 01:31:25,588 --> 01:31:27,456 CHRONIC STROKE, SO WE DEVELOPED 2399 01:31:27,456 --> 01:31:33,362 AN EEG-BASED BCI, VERY SLOW 2400 01:31:33,362 --> 01:31:38,100 BRAIN RHYTHM, AND THE IDEA WAS 2401 01:31:38,100 --> 01:31:42,572 TO DETECT -- AND ONCE DETECTED 2402 01:31:42,572 --> 01:31:45,541 IT WILL CONTROL A ROBOTIC DEVICE 2403 01:31:45,541 --> 01:31:49,579 TO PROVIDE ASSISTANCE NEEDED TO 2404 01:31:49,579 --> 01:31:50,346 THE UPPER LIMB. 2405 01:31:50,346 --> 01:31:53,849 AFTER THE INTERVENTION, WE WERE 2406 01:31:53,849 --> 01:31:57,887 MEASURING THE BENEFIT POST 2407 01:31:57,887 --> 01:31:58,854 INTERVENTION, TWO WEEKS AND A 2408 01:31:58,854 --> 01:31:59,555 MONTH LATER. 2409 01:31:59,555 --> 01:32:06,095 THIS IS WORK FROM MY FORMER -- 2410 01:32:06,095 --> 01:32:08,297 NIKUNJ BHAGAT, IT WAS A 2411 01:32:08,297 --> 01:32:11,267 COLLABORATION WITH MY COLLEAGUE 2412 01:32:11,267 --> 01:32:18,374 DR. FRANCISCO, PMR, AND MARCIO 2413 01:32:18,374 --> 01:32:20,509 MALI WHO WAS RESPONSIBLE FOR THE 2414 01:32:20,509 --> 01:32:23,546 ROW BO AT THIS TIME PART SO 2415 01:32:23,546 --> 01:32:24,747 AGAIN TEAM SCIENCE HERE. 2416 01:32:24,747 --> 01:32:30,853 SO BASICALLY WE HAVE A CLINICAL 2417 01:32:30,853 --> 01:32:32,388 TRIAL WHERE WE ASSESS THE 2418 01:32:32,388 --> 01:32:33,823 PARTICIPANTS TWICE, 30 DAYS 2419 01:32:33,823 --> 01:32:35,391 APART TO MAKE SURE THERE WAS NO 2420 01:32:35,391 --> 01:32:37,126 SPONTANEOUS RECOVERY THAT WILL 2421 01:32:37,126 --> 01:32:39,328 CONFOUND OUR RESULTS. 2422 01:32:39,328 --> 01:32:42,164 THOSE THAT DID NOT SHOW ANY 2423 01:32:42,164 --> 01:32:43,366 DIFFERENCE MORE THAN THREE 2424 01:32:43,366 --> 01:32:47,203 POINTS PROCEEDED TO THE BCI 2425 01:32:47,203 --> 01:32:50,606 CALIBRATION OF THE INTERFACE, 2426 01:32:50,606 --> 01:32:53,342 AND THEN THEY DID THERAPY OVER A 2427 01:32:53,342 --> 01:32:54,644 MONTH OR THREE TIMES A WEEK, 2428 01:32:54,644 --> 01:32:56,445 THEN WE HAVE ASSESSMENT. 2429 01:32:56,445 --> 01:33:00,883 THE TASK WAS -- THAT WAS 2430 01:33:00,883 --> 01:33:02,318 CONTROLLED THROUGH THE BCI, AND 2431 01:33:02,318 --> 01:33:04,153 YOU CAN SEE HERE THE ROBOT FOR 2432 01:33:04,153 --> 01:33:08,891 THE ARM, 64 -- EEG. 2433 01:33:08,891 --> 01:33:12,495 WE ALSO WERE RECORDING EMG TO 2434 01:33:12,495 --> 01:33:18,968 LOOK AT THE EEG-RELATIONSHIP. 2435 01:33:18,968 --> 01:33:25,941 SO THIS IS A SMALL COHORT OF 10 2436 01:33:25,941 --> 01:33:26,475 PARTICIPANTS WITH CHRONIC 2437 01:33:26,475 --> 01:33:26,709 STROKE. 2438 01:33:26,709 --> 01:33:27,810 YOU CAN SEE THE DIFFERENT SCORES 2439 01:33:27,810 --> 01:33:28,377 HERE. 2440 01:33:28,377 --> 01:33:38,020 THE ACTUAL RESEARCH ARM TEST, WE 2441 01:33:38,020 --> 01:33:40,423 HAVE TO SCREEN UP TO A HUNDRED 2442 01:33:40,423 --> 01:33:42,491 TO GET TO THIS TIME, IT TOOK A 2443 01:33:42,491 --> 01:33:43,993 LONG TIME, BUT THESE ARE THE 2444 01:33:43,993 --> 01:33:44,260 OUTCOMES. 2445 01:33:44,260 --> 01:33:48,764 YOU CAN SEE HERE THAT THERE WAS 2446 01:33:48,764 --> 01:33:51,934 A SIGNIFICANT CHANGE FROM 2447 01:33:51,934 --> 01:33:52,902 BASELINE, POST TWO WEEKS, THEN 2448 01:33:52,902 --> 01:33:56,872 IT WAS RETAINED TWO MONTHS AFTER 2449 01:33:56,872 --> 01:34:03,212 FOR BOTH METRICS, AND WE 2450 01:34:03,212 --> 01:34:05,614 ACTUALLY -- PARTICIPANT MUST 2451 01:34:05,614 --> 01:34:09,118 THEN REACH THE CLINICALLY 2452 01:34:09,118 --> 01:34:11,554 IMPORTANT DIFFERENCE, IN THIS 2453 01:34:11,554 --> 01:34:12,621 CASE 5.7. 2454 01:34:12,621 --> 01:34:16,392 AND IF YOU LOOK AT THE AMPLITUDE 2455 01:34:16,392 --> 01:34:21,497 OF THE CHANGE IN THE MOVEMENT 2456 01:34:21,497 --> 01:34:26,001 RELATED CORTICAL POTENTIAL WITH 2457 01:34:26,001 --> 01:34:30,506 THE ARAT SCORE, WE SEE THEY ARE 2458 01:34:30,506 --> 01:34:33,342 LINEARLY RELATED SO THE 2459 01:34:33,342 --> 01:34:34,877 IMPROVEMENT WAS RELATED TO THIS 2460 01:34:34,877 --> 01:34:38,380 CHANGE IN THE AMPLITUDE, SO WE 2461 01:34:38,380 --> 01:34:41,250 OBSERVED CHANGES IN THE EEG, 2462 01:34:41,250 --> 01:34:43,953 WHICH WE ATTRIBUTED TO 2463 01:34:43,953 --> 01:34:44,420 NEUROPLASTICITY. 2464 01:34:44,420 --> 01:34:46,722 NOW FOR THE HIGHLIGHTS, SO WE 2465 01:34:46,722 --> 01:34:50,459 HAVE THESE MOTOR INTENTION BASE 2466 01:34:50,459 --> 01:34:53,629 ARM TRAINING TARGETS ACTIVITY 2467 01:34:53,629 --> 01:34:54,396 DEPENDENT NEUROPLASTICITY 2468 01:34:54,396 --> 01:34:55,397 LEADING TO IMPROVEMENT. 2469 01:34:55,397 --> 01:35:03,272 WE OBSERVED IPSI-LESIONAL DELTA 2470 01:35:03,272 --> 01:35:06,342 BAND EEG ACTIVITY THAT WAS 2471 01:35:06,342 --> 01:35:07,777 HIGHLY CORRELATED WITH MOTOR 2472 01:35:07,777 --> 01:35:08,878 RECOVERY, AND RESULTS SUGGEST 2473 01:35:08,878 --> 01:35:18,821 HIGHER ACTIVATION OF ISILESION 2474 01:35:18,821 --> 01:35:21,690 AL -- SO WE WERE VERY EXCITED 2475 01:35:21,690 --> 01:35:25,528 ABOUT THIS. 2476 01:35:25,528 --> 01:35:32,301 IT WAS VERY EX-P EXPENSIVE EQUI, 2477 01:35:32,301 --> 01:35:33,636 WE REALIZE IF WE WANT TO 2478 01:35:33,636 --> 01:35:34,937 TRANSLATE THIS TO THE END USER, 2479 01:35:34,937 --> 01:35:39,108 WE NEED TO ADDRESS THIS ISSUE. 2480 01:35:39,108 --> 01:35:41,610 IT WAS -- I WENT TO NSF AND SAID 2481 01:35:41,610 --> 01:35:48,083 THESE ARE THE DIFFERENT 2482 01:35:48,083 --> 01:35:52,521 FACTORS -- FORM FACTOR -- 2483 01:35:52,521 --> 01:35:53,255 INTEROPERABILITY AND ALSO 2484 01:35:53,255 --> 01:35:55,090 CONSIDER THE CONNECTIVITY WITH 2485 01:35:55,090 --> 01:35:56,725 IOT SO THAT CAN SPEAK TO 2486 01:35:56,725 --> 01:35:57,960 DIFFERENT HARDWARE. 2487 01:35:57,960 --> 01:35:59,628 SO I AM NOT BOUNDED BY A 2488 01:35:59,628 --> 01:36:03,232 SPECIFIC DEVICE. 2489 01:36:03,232 --> 01:36:07,303 AND TO KEEP TOLD THE STORY HERE, 2490 01:36:07,303 --> 01:36:10,406 THIS IS THE DEVICE, THE CLINICAL 2491 01:36:10,406 --> 01:36:12,341 TRIAL FUNDED BY NIH, WE LEARNED 2492 01:36:12,341 --> 01:36:14,210 WE ONLY NEEDED FIVE ELECTRODES 2493 01:36:14,210 --> 01:36:18,047 TO ACCOMPLISH THIS, SO WE HAD 2494 01:36:18,047 --> 01:36:19,682 FIVE ELECTRODES TO THIS AREA 2495 01:36:19,682 --> 01:36:21,450 HERE, WND HAVE FOUR ELECTRODES 2496 01:36:21,450 --> 01:36:23,519 MONITORING EYE TRACKING, EYE 2497 01:36:23,519 --> 01:36:23,786 MOVEMENTS. 2498 01:36:23,786 --> 01:36:25,187 WE HAVE MACHINE LEARNING 2499 01:36:25,187 --> 01:36:26,889 EMBEDDED, WE HAVE IOT EMBEDDED 2500 01:36:26,889 --> 01:36:30,459 AND WE HAVE THE ADAPTIVE 2501 01:36:30,459 --> 01:36:31,894 NOISE-CANCELING TO GET RID OF 2502 01:36:31,894 --> 01:36:32,328 ARTIFACTS. 2503 01:36:32,328 --> 01:36:36,265 THIS IS DONE IN THE LAB BY 2504 01:36:36,265 --> 01:36:38,234 STUDENTS, IT'S REELIN EXPENSIVE. 2505 01:36:38,234 --> 01:36:40,402 THE ROBOT IS THE EXPENSIVE PART, 2506 01:36:40,402 --> 01:36:43,172 IT WAS ONE OF OUR INDUSTRIAL 2507 01:36:43,172 --> 01:36:45,841 PARTNERS, AND THIS IS A 2508 01:36:45,841 --> 01:36:50,446 CONVERGENCE OF BCI PLUS IOT -- 2509 01:36:50,446 --> 01:36:52,615 IS GOING TO BE HERE SOON. 2510 01:36:52,615 --> 01:36:58,420 WE HAVE A COUPLE OF -- FOR THIS 2511 01:36:58,420 --> 01:36:59,521 WORK. 2512 01:36:59,521 --> 01:37:03,259 SO WE TRY THIS AGAIN, 2513 01:37:03,259 --> 01:37:04,894 DR. FRANCISCO, AGAIN BASELINE, 2514 01:37:04,894 --> 01:37:06,662 CONSENT FORM, THE ASSESSMENTS, 2515 01:37:06,662 --> 01:37:08,864 IF THEY QUALIFY, THEN THEY ARE 2516 01:37:08,864 --> 01:37:12,368 TRAINED TO USE A DEVICE ON THEIR 2517 01:37:12,368 --> 01:37:16,405 OWN, IF THEY HAD TO USE -- THEY 2518 01:37:16,405 --> 01:37:18,107 DIVIDE, THEY GOT HOME AND DO 60 2519 01:37:18,107 --> 01:37:20,042 SESSIONS AND THEN WE TEST TWICE 2520 01:37:20,042 --> 01:37:21,577 AFTER THAT. 2521 01:37:21,577 --> 01:37:27,383 SO THIS IS MOVING THE DEVICE 2522 01:37:27,383 --> 01:37:28,684 FROM THE CLINIC TO THE HOME. 2523 01:37:28,684 --> 01:37:31,120 THIS IS AN EXAMPLE OF THESE 2524 01:37:31,120 --> 01:37:34,723 MRCPs RECORDED WITH -- WE WERE 2525 01:37:34,723 --> 01:37:37,693 LIMITED TO FIVE PEOPLE WITH 2526 01:37:37,693 --> 01:37:39,595 CORONARY STROKE BECAUSE THIS IS 2527 01:37:39,595 --> 01:37:41,864 NSF GRANT AND WE COULDN'T DO 2528 01:37:41,864 --> 01:37:47,236 MORE THAN THAT, BUT THE EMPHASIS 2529 01:37:47,236 --> 01:37:50,105 WAS THE USABILITY BEING ABLE TOO 2530 01:37:50,105 --> 01:37:51,173 DO THIS OUTSIDE THE LAB. 2531 01:37:51,173 --> 01:37:52,508 JUST TO GIVE AN IDEA OF THE 2532 01:37:52,508 --> 01:37:54,643 LESSONS LEARNED, RIGHT, SO THESE 2533 01:37:54,643 --> 01:37:58,447 ARE SOME OF THE DEMOGRAPHICS OF 2534 01:37:58,447 --> 01:37:59,114 OUR PARTICIPANTS. 2535 01:37:59,114 --> 01:38:01,750 I WANT TO NOTE THAT ONE WAS IN 2536 01:38:01,750 --> 01:38:02,751 CALIFORNIA, ONE WAS IN MARYLAND. 2537 01:38:02,751 --> 01:38:04,186 SO THEY LEARNED ABOUT THE TRIAL 2538 01:38:04,186 --> 01:38:05,921 AND THEY CAME TO HOUSTON TO BE 2539 01:38:05,921 --> 01:38:08,257 PART OF THE TRIAL AT THEIR OWN 2540 01:38:08,257 --> 01:38:16,699 EXPENSE, AND THEN WE SENT THEM 2541 01:38:16,699 --> 01:38:18,534 THE DEVICE, AND USING ZOOM AND 2542 01:38:18,534 --> 01:38:19,969 PHONE CALLS, WE KEPT IN TOUCH. 2543 01:38:19,969 --> 01:38:21,537 WE LEARNED THAT, YOU KNOW, 2544 01:38:21,537 --> 01:38:22,838 SOMETIMES THE ROBOTIC ARM WOULD 2545 01:38:22,838 --> 01:38:24,840 NOT PAIR WITH THE DEVICE, THAT 2546 01:38:24,840 --> 01:38:26,275 HAPPENED IN THREE PERSONS. 2547 01:38:26,275 --> 01:38:28,444 SO WE HAD TO UPGRADE THE 2548 01:38:28,444 --> 01:38:31,847 FRAMEWORK FOR THE ROBOT. 2549 01:38:31,847 --> 01:38:34,049 WE HAVE ONE PARTICIPANT THAT 2550 01:38:34,049 --> 01:38:36,018 COULDN'T REALLY CONNECT THE 2551 01:38:36,018 --> 01:38:37,653 DEVICE TO THE CHARGER SO WE HAD 2552 01:38:37,653 --> 01:38:40,189 TO REPLACE THAT WITH A USB-C 2553 01:38:40,189 --> 01:38:41,590 PORT. 2554 01:38:41,590 --> 01:38:45,761 AND WE HAVE AN ISSUE WITH THE 2555 01:38:45,761 --> 01:38:47,830 BATTERY SO WE HAD TO REDESIGN 2556 01:38:47,830 --> 01:38:48,364 THE BATTERY. 2557 01:38:48,364 --> 01:38:51,600 THERE WAS A PROBLEM WITH THE 2558 01:38:51,600 --> 01:38:54,870 SERVER, THE INTERFACE WAS 2559 01:38:54,870 --> 01:38:56,205 WEB-BASED, YOU CAN ACCESS THAT 2560 01:38:56,205 --> 01:38:57,740 THROUGH ANY IPHONE OR SMARTPHONE 2561 01:38:57,740 --> 01:39:02,077 OR TABLET, WE HAD TO DOO TO DO N 2562 01:39:02,077 --> 01:39:03,045 OF THE SOFTWARE. 2563 01:39:03,045 --> 01:39:04,413 EVEN THOUGH WE TRAINED THEM TO 2564 01:39:04,413 --> 01:39:07,282 100 DEVICES, WE LEARNED THAT 2565 01:39:07,282 --> 01:39:08,517 ONCE THEY'RE AT HOME THEY DON'T 2566 01:39:08,517 --> 01:39:09,518 REALLY PAY ATTENTION TO THAT TOO 2567 01:39:09,518 --> 01:39:13,255 MUCH AND WE HAD TO REIMPORT THE 2568 01:39:13,255 --> 01:39:14,456 DEVICE IN DIFFERENT PLACES BASED 2569 01:39:14,456 --> 01:39:17,960 ON THE FEEDBACK. 2570 01:39:17,960 --> 01:39:19,495 SO I THINK WE HAVE A SYSTEM NOW 2571 01:39:19,495 --> 01:39:24,333 THAT HAS BEEN DESIGNED WITH THE 2572 01:39:24,333 --> 01:39:25,534 USER IN MIND WITH THEIR FEEDBACK 2573 01:39:25,534 --> 01:39:27,836 AND WE ARE AT THE POINT WHERE WE 2574 01:39:27,836 --> 01:39:29,304 ARE READY TO DO THAT CLINICAL 2575 01:39:29,304 --> 01:39:30,806 TRIAL, TALK TO THE FDA ABOUT 2576 01:39:30,806 --> 01:39:33,242 WHAT IS GOING TO BE NEEDED FOR 2577 01:39:33,242 --> 01:39:33,776 THAT. 2578 01:39:33,776 --> 01:39:35,744 SO IN THE LAST 10 MINUTES, I'M 2579 01:39:35,744 --> 01:39:38,280 GOING TO JUMP TO A NEW 2580 01:39:38,280 --> 01:39:40,716 APPLICATION TWHE THAT I'M REALLY 2581 01:39:40,716 --> 01:39:43,752 PASSIONATE ABOUT. 2582 01:39:43,752 --> 01:39:44,453 USING APPLICATION OF THIS 2583 01:39:44,453 --> 01:39:48,157 TECHNOLOGY TO UNDERSTAND THE 2584 01:39:48,157 --> 01:39:51,794 SOCIAL BRAIN, WHEN YOU ARE 2585 01:39:51,794 --> 01:39:55,531 RECORDING FOR MORE THAN ONE 2586 01:39:55,531 --> 01:39:58,333 BRAIN AT TA TIME. 2587 01:39:58,333 --> 01:40:02,938 I FOUND YOU HUMANITIES ARE A 2588 01:40:02,938 --> 01:40:04,173 REALLY BEAUTIFUL AND PRODUCTIVE 2589 01:40:04,173 --> 01:40:06,241 WINDOW TO STUDY SOCIAL 2590 01:40:06,241 --> 01:40:07,443 INTERACTION. 2591 01:40:07,443 --> 01:40:08,210 FOR DIFFERENT REASONS. 2592 01:40:08,210 --> 01:40:09,678 ONE IS THAT THEY ARE HIGHLY 2593 01:40:09,678 --> 01:40:10,646 SKILLED, SO I DON'T NEED TO 2594 01:40:10,646 --> 01:40:11,980 WORRY ABOUT CAN THEY CONTROL 2595 01:40:11,980 --> 01:40:14,483 THEIR BODY, DO THEY HAVE GOOD 2596 01:40:14,483 --> 01:40:15,751 KINETIC SENSE, THEY NEED TO 2597 01:40:15,751 --> 01:40:17,786 LEARN THE MUSIC, THEY NEED TO 2598 01:40:17,786 --> 01:40:21,523 LEARN THE CORE CHOREOGRAPHY SON 2599 01:40:21,523 --> 01:40:22,558 LOOK AT THE CORRECTIVE PROCESS, 2600 01:40:22,558 --> 01:40:25,160 THE SEQUENCE LEARNING AND CAN 2601 01:40:25,160 --> 01:40:26,395 LOOK AT HOW NOT ONLY THEIR 2602 01:40:26,395 --> 01:40:27,830 MOVEMENTS ARE SYNCHRONIZED BUT 2603 01:40:27,830 --> 01:40:31,333 THEIR BRAIN ACTIVITY ARE 2604 01:40:31,333 --> 01:40:31,767 SYNCHRONIZED. 2605 01:40:31,767 --> 01:40:33,969 I ALSO LEARNED THAT BY WORKING 2606 01:40:33,969 --> 01:40:38,941 WITH PROFESSIONALS, THESE 2607 01:40:38,941 --> 01:40:40,109 PERFORMANCES ARE CONDUCTED IN 2608 01:40:40,109 --> 01:40:41,877 THEATERS OR PERFORMED IN VENUES, 2609 01:40:41,877 --> 01:40:45,881 IT NEEDS TO WORK. 2610 01:40:45,881 --> 01:40:48,350 AND SOMETIMES WE NEED TO SOLVE A 2611 01:40:48,350 --> 01:40:49,685 PROBLEM 10 MINUTES BEFORE THE 2612 01:40:49,685 --> 01:40:51,420 CURTAIN GOES UP, AND IT HAS BEEN 2613 01:40:51,420 --> 01:40:52,654 GREAT AT PROBLEM SOLVING, 2614 01:40:52,654 --> 01:40:59,228 TRAINING FOR MY STUDENTS. 2615 01:40:59,228 --> 01:41:00,963 THI ARE MORE OPEN, THEY DON'T 2616 01:41:00,963 --> 01:41:02,731 GET STRESSED OUT, THEY ARE MORE 2617 01:41:02,731 --> 01:41:03,765 BRAVE TO ADDRESS THOSE 2618 01:41:03,765 --> 01:41:08,637 CHALLENGES. 2619 01:41:08,637 --> 01:41:10,272 AND THE THIRD ASPECT IS WE ARE 2620 01:41:10,272 --> 01:41:12,040 INFORMING THE PUBLIC, TYPICALLY 2621 01:41:12,040 --> 01:41:13,575 WE HAVE QAs AT THE END SO WE 2622 01:41:13,575 --> 01:41:15,210 CAN TELL THEM ABOUT WHAT BCI IS 2623 01:41:15,210 --> 01:41:17,079 AND IS NOT. 2624 01:41:17,079 --> 01:41:21,817 WHAT ARE THE ETHICAL ASPECTS, 2625 01:41:21,817 --> 01:41:23,418 WHERE WE ARE IN THE TECHNOLOGY, 2626 01:41:23,418 --> 01:41:28,157 AND WE PRESENTED THIS RECENTLY 2627 01:41:28,157 --> 01:41:37,166 IN HOUSTON ABOUT 1500 KIDS FROM 2628 01:41:37,166 --> 01:41:38,500 THEIR SCHOOL AND THEIR TEACHER 2629 01:41:38,500 --> 01:41:42,104 SO. 2630 01:41:42,104 --> 01:41:43,238 I CAN REACH OUT FROM THE LAB 2631 01:41:43,238 --> 01:41:43,805 OR THE CLINIC. 2632 01:41:43,805 --> 01:41:45,007 THIS IS ONE OF THE THINGS THAT 2633 01:41:45,007 --> 01:41:50,012 WE HAD DONE, LIVEWIRE, IT WAS A 2634 01:41:50,012 --> 01:41:56,084 COLLABORATION WITH CORE 2635 01:41:56,084 --> 01:41:56,718 CHOREOGRAPHERS ACROSS 2636 01:41:56,718 --> 01:41:57,252 DISCIPLINES. 2637 01:41:57,252 --> 01:42:00,789 SO THIS IS AN EXAMPLE OF A 2638 01:42:00,789 --> 01:42:01,757 PERFORMANCE. 2639 01:42:01,757 --> 01:42:05,694 YOU SEE THE TWO DANCERS ARE 2640 01:42:05,694 --> 01:42:08,463 INSTRUMENTED, BUT YOU SEE AT THE 2641 01:42:08,463 --> 01:42:11,099 BACK OUR REPRESENTATIONS OF 2642 01:42:11,099 --> 01:42:14,403 THEIR SKULL MAPS AND -- SO YOU 2643 01:42:14,403 --> 01:42:16,371 CAN SEE HOW THEY ARE CONNECTED, 2644 01:42:16,371 --> 01:42:18,340 THE BRAIN. 2645 01:42:18,340 --> 01:42:21,009 WE ARE RECORDING THE DATA SO WE 2646 01:42:21,009 --> 01:42:23,412 CAN GO BACK TO THE LAB AND 2647 01:42:23,412 --> 01:42:28,217 ANALYZE, THIS IS WHAT WE CAN DO 2648 01:42:28,217 --> 01:42:31,019 WITH THIS PARTICULAR PERFORM MER 2649 01:42:31,019 --> 01:42:33,522 WHO WANTED TO SHOW THE ARTISTIC 2650 01:42:33,522 --> 01:42:34,823 AND SCIENTIFIC -- IN A WAY THAT 2651 01:42:34,823 --> 01:42:35,724 WOULD BE ACCESSIBLE FOR 2652 01:42:35,724 --> 01:42:40,629 PARTICIPANTS. 2653 01:42:40,629 --> 01:42:44,166 YEAH, ALL OF THIS IN REALTIME. 2654 01:42:44,166 --> 01:42:45,234 SO THE KIND OF QUESTION THAT 2655 01:42:45,234 --> 01:42:47,102 WE'RE INTERESTED IN IN 2656 01:42:47,102 --> 01:42:48,470 UNDERSTANDING THE CREATIVE 2657 01:42:48,470 --> 01:42:49,438 PROCESS, THIS IS SOMETHING 2658 01:42:49,438 --> 01:42:50,872 REALLY I FOUND MY COLLABORATORS 2659 01:42:50,872 --> 01:42:54,910 TO BE REALLY INTERESTED. 2660 01:42:54,910 --> 01:42:56,478 AND THEY ARE LEARNING A LOT 2661 01:42:56,478 --> 01:42:58,213 ABOUT NEUROSCIENCE, NOW THEY ARE 2662 01:42:58,213 --> 01:42:59,314 DOING TED TALKS TALKING ABOUT 2663 01:42:59,314 --> 01:43:00,315 THE NEUROSCIENCE OF DANCE. 2664 01:43:00,315 --> 01:43:02,417 BEFORE THEY WERE JUST DANCERS, 2665 01:43:02,417 --> 01:43:04,052 PROFESSIONAL, NOW THEY'RE A 2666 01:43:04,052 --> 01:43:05,787 FIELD THAT THEY ARE LEARNING AND 2667 01:43:05,787 --> 01:43:07,256 VICE VERSA, RIGHT? 2668 01:43:07,256 --> 01:43:09,458 HOW DIFFERENT LANGUAGE I HAD TO 2669 01:43:09,458 --> 01:43:09,791 LEARN TOO. 2670 01:43:09,791 --> 01:43:10,592 DO YOU HAVE A QUESTION? 2671 01:43:10,592 --> 01:43:12,761 >> DO YOU THINK YOU COULD CREATE 2672 01:43:12,761 --> 01:43:14,196 A ROBOT MAKING THE SAME 2673 01:43:14,196 --> 01:43:16,265 MOVEMENTS BASED ON THE 2674 01:43:16,265 --> 01:43:16,565 RECORDINGS? 2675 01:43:16,565 --> 01:43:19,134 >> GREAT QUESTION. 2676 01:43:19,134 --> 01:43:21,903 THAT WAS A QUESTION IN PART 2677 01:43:21,903 --> 01:43:23,438 RESPONSIVE FOR GOING TO DANCE, 2678 01:43:23,438 --> 01:43:25,173 BECAUSE I DO EXPERIMENT WITH 2679 01:43:25,173 --> 01:43:28,610 LOWER LIMB, EXOSKELETONS BUT 2680 01:43:28,610 --> 01:43:29,911 THEY'RE VERY -- AND WE 2681 01:43:29,911 --> 01:43:33,849 COMMUNICATE AS WELL THROUGH 2682 01:43:33,849 --> 01:43:35,917 MOVEMENT. 2683 01:43:35,917 --> 01:43:37,819 WE CAN RECORD THIS EXPRESSIVE 2684 01:43:37,819 --> 01:43:39,788 MOVEMENT SO WITH THE MOST RECENT 2685 01:43:39,788 --> 01:43:41,990 EXOSKELETON THAT HAS MULTIPLE -- 2686 01:43:41,990 --> 01:43:44,092 OF FREEDOM WE COULD START OUT 2687 01:43:44,092 --> 01:43:45,193 COMMUNICATING WITH, YOU KNOW, 2688 01:43:45,193 --> 01:43:46,561 OUR MENTAL STATE OR EMOTIONS 2689 01:43:46,561 --> 01:43:47,596 THROUGH MOVEMENT. 2690 01:43:47,596 --> 01:43:53,001 SO HOPEFULLY MAYBE IN THE 2691 01:43:53,001 --> 01:43:53,235 FUTURE. 2692 01:43:53,235 --> 01:43:57,706 >> AS USUAL I'M GOING TO SOUND 2693 01:43:57,706 --> 01:43:59,341 LIKE -- BUT TO DIFFERENTIATE 2694 01:43:59,341 --> 01:44:00,208 BETWEEN THE SYNCHRONIZATION OF 2695 01:44:00,208 --> 01:44:02,878 THE ACTIVITIES THAT ARE SIMPLY 2696 01:44:02,878 --> 01:44:04,513 RELATED TO SYNCHRONOUS STIMULI, 2697 01:44:04,513 --> 01:44:08,684 AND THE CREATIVE PROCESS AND THE 2698 01:44:08,684 --> 01:44:09,618 ESTHETIC PROCESS, WOULDN'T YOU 2699 01:44:09,618 --> 01:44:11,453 NEED A CONTROL THAT HAS THE SAME 2700 01:44:11,453 --> 01:44:14,956 TYPE OF STIMULI BUT NON-CREATIVE 2701 01:44:14,956 --> 01:44:15,524 AND NON- -- 2702 01:44:15,524 --> 01:44:17,526 >> LET ME -- YEAH, LET ME ANSWER 2703 01:44:17,526 --> 01:44:21,229 THAT, AND WE HAVE CONTROLS FOR 2704 01:44:21,229 --> 01:44:22,197 DIFFERENT THINGS, OF COURSE. 2705 01:44:22,197 --> 01:44:24,566 BUT I THINK ONE IMPORTANT POINT, 2706 01:44:24,566 --> 01:44:28,737 THIS IS UNCONSTRAINED REALISTIC 2707 01:44:28,737 --> 01:44:38,480 AND - ECOLOGICAL SETTINGS. 2708 01:44:38,480 --> 01:44:44,386 SO THIS IS -- SO IN THIS CASE 2709 01:44:44,386 --> 01:44:46,955 THEY HAVE EEG SENSORS, THEY HAVE 2710 01:44:46,955 --> 01:44:49,257 MOTION SENSORS TO TRACK THEIR 2711 01:44:49,257 --> 01:44:50,892 HEAD, ALL SYNCHRONIZED IN 2712 01:44:50,892 --> 01:44:55,731 REALTIME USING -- SO ACCURACY IS 2713 01:44:55,731 --> 01:44:58,300 VERY IMPORTANT HERE. 2714 01:44:58,300 --> 01:45:01,570 THERE IS A QUALITY CHECK, 2715 01:45:01,570 --> 01:45:03,205 PRECALIBRATION, IN THIS CASE -- 2716 01:45:03,205 --> 01:45:03,638 EYES CLOSED. 2717 01:45:03,638 --> 01:45:09,811 BUT YOU CAN SEE AT THE BOTTOM, 2718 01:45:09,811 --> 01:45:11,546 SO THESE ARE DESIGNED AND THE 2719 01:45:11,546 --> 01:45:12,748 MUSIC BY MY COLLEAGUES BASED ON 2720 01:45:12,748 --> 01:45:13,782 A CONVERSATION ABOUT 2721 01:45:13,782 --> 01:45:14,783 NEUROSCIENCE. 2722 01:45:14,783 --> 01:45:19,788 SO WE WENT TO -- THEY'RE 2723 01:45:19,788 --> 01:45:21,623 MIMICKING OR WORKING DIFFERENT 2724 01:45:21,623 --> 01:45:22,991 THINGS, SO WE WANT TO LOOK AT 2725 01:45:22,991 --> 01:45:27,529 THE NEURAL SYSTEM THEN THEY -- 2726 01:45:27,529 --> 01:45:29,698 LOOK AT EACH OTHER OR TOUCH SO 2727 01:45:29,698 --> 01:45:32,768 WE TRY TO BUILD THIS IN A 2728 01:45:32,768 --> 01:45:37,606 NATURAL WAY IN THE CHOREA GRO C. 2729 01:45:37,606 --> 01:45:40,075 SO THIS TAKES MONTHS. 2730 01:45:40,075 --> 01:45:44,112 SUMMER 2021, WE DISCOVER -- EEG 2731 01:45:44,112 --> 01:45:45,080 DANCERS TO UNDERSTAND WHAT IS 2732 01:45:45,080 --> 01:45:48,183 THE BEST WAY TO -- THE SIGNAL 2733 01:45:48,183 --> 01:45:49,418 QUALITY AND THEN AT SOME POINT 2734 01:45:49,418 --> 01:45:52,454 WE STARTED RECORDING THESE 2735 01:45:52,454 --> 01:45:54,689 REHEARSALS, SO WE SEE HERE WE 2736 01:45:54,689 --> 01:45:55,690 RECORDED TWICE, THREE TIMES, 2737 01:45:55,690 --> 01:45:57,993 THREE TIMES HERE, THEN WE HAVE 2738 01:45:57,993 --> 01:45:58,627 PERFORMANCES. 2739 01:45:58,627 --> 01:46:03,165 SO IN THIS PARTICULAR EXAMPLE, 2740 01:46:03,165 --> 01:46:05,400 WE HAVE SEVEN REHEARSALS AND 2741 01:46:05,400 --> 01:46:06,668 THREE PERFORMANCES. 2742 01:46:06,668 --> 01:46:10,105 SO YOU CAN LOOK ON EEG HOW THE 2743 01:46:10,105 --> 01:46:12,174 NETWORK IS CHANGING AND THE 2744 01:46:12,174 --> 01:46:13,608 MUSIC TO THE MOMENT THAT THEY 2745 01:46:13,608 --> 01:46:14,042 ARE PERFORMING. 2746 01:46:14,042 --> 01:46:23,718 SO THIS IS JUST -- BEFORE AND 2747 01:46:23,718 --> 01:46:26,321 AFTER, WE CAN REMOVE ARTIFACTS 2748 01:46:26,321 --> 01:46:31,493 OF DIFFERENT KINDS, AND THIS IS 2749 01:46:31,493 --> 01:46:32,060 PUBLISHED -- IF YOU'RE 2750 01:46:32,060 --> 01:46:32,594 INTERESTED. 2751 01:46:32,594 --> 01:46:33,595 THIS IS JUST AN EXAMPLE, I DON'T 2752 01:46:33,595 --> 01:46:35,363 HAVE TOO MUCH TIME HERE. 2753 01:46:35,363 --> 01:46:37,499 SO TO ONE QUESTION IS, THESE 2754 01:46:37,499 --> 01:46:38,266 DANCERS HAVE BEEN WORKING 2755 01:46:38,266 --> 01:46:41,837 TOGETHER FOR SEVERAL MONTHS, 2756 01:46:41,837 --> 01:46:43,071 LEARNING THE CHOREOGRAPHY AND 2757 01:46:43,071 --> 01:46:46,842 THE MUSIC, THEY ARE DEVELOPING 2758 01:46:46,842 --> 01:46:49,778 THEIR INTERNAL -- EACH OTHER. 2759 01:46:49,778 --> 01:46:51,213 IT BECOMES AUTOMATED. 2760 01:46:51,213 --> 01:46:53,315 IN FACT IF THEY'RE THINKING 2761 01:46:53,315 --> 01:46:54,082 ABOUT THE CHOREOGRAPHY, THEY 2762 01:46:54,082 --> 01:46:55,083 WILL MOST LIKELY FAIL. 2763 01:46:55,083 --> 01:46:56,284 SO JUST LIKE A SEQUENCE RUNNING. 2764 01:46:56,284 --> 01:46:58,887 SO I THOUGHT THEY ARE LEARNING 2765 01:46:58,887 --> 01:47:00,922 EACH OTHER'S INTERNAL MODELS, 2766 01:47:00,922 --> 01:47:03,525 YOU KNOW, THEY SHOULD SHARE SOME 2767 01:47:03,525 --> 01:47:05,660 NEUROSUBSTRATES, RIGHT? 2768 01:47:05,660 --> 01:47:09,397 AND SO AFTER CLEANING USING 2769 01:47:09,397 --> 01:47:15,403 THE -- ANALYSIS AND -- MRI 2770 01:47:15,403 --> 01:47:18,406 TEMPLATE, WE IDENTIFIED THESE 2771 01:47:18,406 --> 01:47:22,210 SOURCES OR THAT WERE SHARED 2772 01:47:22,210 --> 01:47:23,111 ACROSS BOTH DANCERS. 2773 01:47:23,111 --> 01:47:26,481 YOU CAN SEE SMA, WHICH INVOLVES 2774 01:47:26,481 --> 01:47:27,449 SEQUENCE LEARNING AND 2775 01:47:27,449 --> 01:47:31,820 PRODUCTION, WHICH YOU WOULD 2776 01:47:31,820 --> 01:47:38,693 EXPECT THE -- AREA 7, SOME 2777 01:47:38,693 --> 01:47:42,464 COGNITIVE AREAS, BUT THOSE ARE 2778 01:47:42,464 --> 01:47:45,867 UNIQUE TO THE DANCER. 2779 01:47:45,867 --> 01:47:49,704 NOW, THIS IS THE AVERAGE IN THE 2780 01:47:49,704 --> 01:47:51,873 BRAIN SYNCHRONY DURING A 2781 01:47:51,873 --> 01:47:52,908 PERFORMANCE, YOU CAN SEE HOW 2782 01:47:52,908 --> 01:47:53,909 THAT'S CHANGING BASED ON WHAT 2783 01:47:53,909 --> 01:47:55,210 THEY ARE DOING HERE. 2784 01:47:55,210 --> 01:47:56,745 AT SOME POINT THEY TOUCH EACH 2785 01:47:56,745 --> 01:47:58,747 OTHER AND IT GOES UP, SO WE CAN 2786 01:47:58,747 --> 01:48:00,715 TRACK THIS, WE HAVE VIDEO SO WE 2787 01:48:00,715 --> 01:48:03,685 CAN SEE HOW THE BEHAVIOR RELATES 2788 01:48:03,685 --> 01:48:07,889 TO THE BRAIN SYNCHRONIZATION. 2789 01:48:07,889 --> 01:48:11,493 WE CAN ALSO DO FUNCTIONAL 2790 01:48:11,493 --> 01:48:12,294 CONNECTIVITY BRAIN TO BRAIN. 2791 01:48:12,294 --> 01:48:13,695 SO THE WOMAN WAS THE LEAD 2792 01:48:13,695 --> 01:48:15,263 DANCER. 2793 01:48:15,263 --> 01:48:16,665 OKAY, AND UNFORTUNATELY YOU 2794 01:48:16,665 --> 01:48:20,302 CANNOT SEE WELL THE PATTERN, BUT 2795 01:48:20,302 --> 01:48:23,438 WHEN WE LOOK AT HOW THESE AREAS 2796 01:48:23,438 --> 01:48:24,272 TALK TO EACH OTHER, REMEMBER 2797 01:48:24,272 --> 01:48:26,374 THESE ARE THE SHARED AREAS OF 2798 01:48:26,374 --> 01:48:27,676 THE TWO DANCERS I SHOWED YOU 2799 01:48:27,676 --> 01:48:28,610 BEFORE. 2800 01:48:28,610 --> 01:48:31,212 SO AREA AREA 31 TALKS TO AREA 2801 01:48:31,212 --> 01:48:34,215 7 OR THE OTHER DANCER TO AREA 6. 2802 01:48:34,215 --> 01:48:38,486 WE SEE A STRONGER PATTERN OF 2803 01:48:38,486 --> 01:48:39,588 CONNECTIVITY FROM THE LEAD TO 2804 01:48:39,588 --> 01:48:41,089 THE SECOND DANCER AND WEAKER 2805 01:48:41,089 --> 01:48:41,990 FROM THE SECOND DANCER TO THE 2806 01:48:41,990 --> 01:48:48,330 LEAD. 2807 01:48:48,330 --> 01:48:54,502 SO WE HAVE INFORMATION, ALL OF 2808 01:48:54,502 --> 01:48:55,704 THIS IS SYNCHRONIZED. 2809 01:48:55,704 --> 01:48:57,005 THERE'S GOING TO BE SINK NATION 2810 01:48:57,005 --> 01:48:59,174 DUE TO DIFFERENT FACTORS. 2811 01:48:59,174 --> 01:49:00,375 SO THERE'S GOING TO BE 2812 01:49:00,375 --> 01:49:01,376 SYNCHRONIZATION BECAUSE THEY ARE 2813 01:49:01,376 --> 01:49:05,246 MOVING TOGETHER, BECAUSE THEY'RE 2814 01:49:05,246 --> 01:49:06,681 TOUCHING. 2815 01:49:06,681 --> 01:49:08,883 AND ALSO BECAUSE IT'S -- SO 2816 01:49:08,883 --> 01:49:12,520 THERE IS INPUT HERE, CERTAINLY 2817 01:49:12,520 --> 01:49:15,390 FROM VISUAL AREA AND AUDITORY 2818 01:49:15,390 --> 01:49:16,591 AREA BUT THESE ARE THE AREAS 2819 01:49:16,591 --> 01:49:16,958 THAT ARE SHARED. 2820 01:49:16,958 --> 01:49:18,560 >> BUT THE ENTRAINMENT, THAT'S 2821 01:49:18,560 --> 01:49:19,661 THE QUESTION I WAS ASKING 2822 01:49:19,661 --> 01:49:20,328 BEFORE. 2823 01:49:20,328 --> 01:49:21,963 YOU'RE ENTRAINING BRAIN ACTIVITY 2824 01:49:21,963 --> 01:49:23,498 BY THE AUDITORY STIMULATION AND 2825 01:49:23,498 --> 01:49:27,369 BY THE MOVEMENT REQUIREMENT. 2826 01:49:27,369 --> 01:49:29,237 SO YOU COULD GET THIS SAME THING 2827 01:49:29,237 --> 01:49:30,839 IF -- WHAT I'M ASKING ABOUT 2828 01:49:30,839 --> 01:49:33,008 CONTROL, WHAT IF YOU EITHER USE 2829 01:49:33,008 --> 01:49:38,480 NON-ESTHETIC OR NON-, YOU KNOW, 2830 01:49:38,480 --> 01:49:40,281 ARTISTIC STIMULI AND WOULD YOU 2831 01:49:40,281 --> 01:49:43,551 GET THE SAME THING, OR WHAT IF 2832 01:49:43,551 --> 01:49:44,986 YOU TOTALLY SEPARATED THEM AND 2833 01:49:44,986 --> 01:49:46,788 USED THE SAME SYNCHRONOUS 2834 01:49:46,788 --> 01:49:49,090 SIGNALS AND REQUIREMENTS FOR 2835 01:49:49,090 --> 01:49:51,726 DANCE, WOULD YOU END UP WITH THE 2836 01:49:51,726 --> 01:49:53,294 SAME -- I MEAN, THE BRAIN, 2837 01:49:53,294 --> 01:49:53,895 THEY'RE NOT TALKING TO EACH 2838 01:49:53,895 --> 01:49:57,032 OTHER, THEY'RING IF THROUGH THEE 2839 01:49:57,032 --> 01:49:58,366 SENSES PERIPHERALLY AND THEN 2840 01:49:58,366 --> 01:49:58,800 STIMULATING. 2841 01:49:58,800 --> 01:50:02,237 >> I THINK THAT, AGAIN, THEY ARE 2842 01:50:02,237 --> 01:50:06,941 LEARNING THIS INTERNAL MODEL. 2843 01:50:06,941 --> 01:50:10,612 OF COURSE THE SENSORY INPUT IS 2844 01:50:10,612 --> 01:50:11,346 TRIGGERING, RIGHT? 2845 01:50:11,346 --> 01:50:11,680 >> YES. 2846 01:50:11,680 --> 01:50:14,382 >> BUT -- AND THAT'S -- 2847 01:50:14,382 --> 01:50:15,784 >> I UNDERSTAND WHAT YOU'RE 2848 01:50:15,784 --> 01:50:16,451 SAYING. 2849 01:50:16,451 --> 01:50:17,552 IT'S ALSO PREDICTIVE, THEY'RE 2850 01:50:17,552 --> 01:50:18,853 DOING A MODEL OF THE THING. 2851 01:50:18,853 --> 01:50:19,087 OKAY. 2852 01:50:19,087 --> 01:50:20,955 SO IT DOESN'T REALLY MATTER IF 2853 01:50:20,955 --> 01:50:22,857 YOU SEPARATED THEM AND THEN YOU 2854 01:50:22,857 --> 01:50:26,127 REQUIRED THE SAME THING. 2855 01:50:26,127 --> 01:50:26,695 , IT 2856 01:50:26,695 --> 01:50:27,862 WOULDN'T MATTER BECAUSE YOU'D 2857 01:50:27,862 --> 01:50:29,297 GET THE SAME ENTRAINMENT. 2858 01:50:29,297 --> 01:50:33,134 >> WE HAD DONE A STUDY WITH A 2859 01:50:33,134 --> 01:50:36,805 JAZZ MUSICIAN IN WHICH THEY 2860 01:50:36,805 --> 01:50:38,640 IMPROVISE AND WE CAN PREDICT 2861 01:50:38,640 --> 01:50:43,578 WHEN THE BRAIN ACTIVITY -- I 2862 01:50:43,578 --> 01:50:44,813 DON'T HAVE THAT DATA HERE. 2863 01:50:44,813 --> 01:50:45,814 THIS IS AN EXCELLENT QUESTION 2864 01:50:45,814 --> 01:50:47,682 BUT WE JUST STARTED TO EXPLORE 2865 01:50:47,682 --> 01:50:48,116 THIS. 2866 01:50:48,116 --> 01:50:49,451 IT TAKES A LONG TIME TO GET 2867 01:50:49,451 --> 01:50:53,421 THIS. 2868 01:50:53,421 --> 01:50:56,491 SO THIS IS -- 2869 01:50:56,491 --> 01:51:04,499 [MUSIC] 2870 01:51:04,499 --> 01:51:12,674 -- SO YOU KNOW, I THINK ONE WAY 2871 01:51:12,674 --> 01:51:18,646 TO PROVE THIS IS TO GET AN MRI, 2872 01:51:18,646 --> 01:51:29,157 BUT NOW WE HAVE -- [INAUDIBLE] 2873 01:51:30,992 --> 01:51:33,595 >> [INAUDIBLE] 2874 01:51:33,595 --> 01:51:37,866 >> WELL, THE ONE ON THE LEFT WAS 2875 01:51:37,866 --> 01:51:42,904 THE WOMAN. 2876 01:51:42,904 --> 01:51:52,514 I CAN PLAY IT AGAIN. 2877 01:51:52,514 --> 01:51:54,082 SO THE WOMAN IS ON THE LEFT, THE 2878 01:51:54,082 --> 01:51:59,220 MAN IS ON THE RIGHT. 2879 01:51:59,220 --> 01:52:00,155 SO AS THEY ARE MOVING -- 2880 01:52:00,155 --> 01:52:01,389 >> CAN YOU PLAY IT AGAIN? 2881 01:52:01,389 --> 01:52:11,633 >> I CAN TRY. 2882 01:52:47,268 --> 01:52:48,603 >> QUESTION. 2883 01:52:48,603 --> 01:52:50,238 SO IN ONE -- IN THE PREVIOUS 2884 01:52:50,238 --> 01:52:55,810 STUDY WITH THE EEG AND THE ECOG 2885 01:52:55,810 --> 01:52:58,746 FOR THE STROKE, YOU FOCUSED ON 2886 01:52:58,746 --> 01:53:00,381 THE DELTA BAND. 2887 01:53:00,381 --> 01:53:01,716 WHICH SEEMS A LITTLE STRANGE TO 2888 01:53:01,716 --> 01:53:02,884 ME BECAUSE I WAS THINKING WOULD 2889 01:53:02,884 --> 01:53:05,153 YOU FOCUS ON THE NEW BAND, THE 2890 01:53:05,153 --> 01:53:07,422 ALPHA BAND OR THE BETA BAND, BUT 2891 01:53:07,422 --> 01:53:09,524 YOU FOCUSED ON THE DELTA SO I 2892 01:53:09,524 --> 01:53:10,391 WAS CURIOUS ABOUT THAT. 2893 01:53:10,391 --> 01:53:11,893 THEN THIS ONE, YOU'RE FOCUSING 2894 01:53:11,893 --> 01:53:12,827 ON THE GAMMA BAND. 2895 01:53:12,827 --> 01:53:15,029 CAN YOU EXPLAIN KIND OF LIKE THE 2896 01:53:15,029 --> 01:53:17,398 RATIONALE BEHIND SWITCHING 2897 01:53:17,398 --> 01:53:17,599 THOSE? 2898 01:53:17,599 --> 01:53:21,536 >> SO ON THE OTHER STUDY, WE 2899 01:53:21,536 --> 01:53:24,906 HAVE REPORTED BACK TO 2010 THAT 2900 01:53:24,906 --> 01:53:35,049 IN TERMS OF EEG, THE BEST 2901 01:53:35,049 --> 01:53:40,588 ALGORITHM FOR -- INT DETECTING T 2902 01:53:40,588 --> 01:53:44,158 FOR MOVEMENT WAS AMPLITUDE 2903 01:53:44,158 --> 01:53:50,064 MODULATION I IN THE -- BAND. 2904 01:53:50,064 --> 01:53:51,933 YOU HAVE TO HAVE -- YOU ARE -- 2905 01:53:51,933 --> 01:53:54,202 WITH MEMORY, SO THE -- IN THE 2906 01:53:54,202 --> 01:53:55,837 PICTURE, RIGHT? 2907 01:53:55,837 --> 01:53:57,138 AND MANY PAPERS HAVE VALIDATED 2908 01:53:57,138 --> 01:53:59,641 THAT AND ACTUALLY PEOPLE WORKING 2909 01:53:59,641 --> 01:54:01,776 WITH LOCAL -- POTENTIAL HAVE 2910 01:54:01,776 --> 01:54:06,381 THIS -- WHERE YOU -- THEY'RE SO 2911 01:54:06,381 --> 01:54:09,017 IN THE HIGHER FREQUENCIES, SO -- 2912 01:54:09,017 --> 01:54:11,486 NOT ONLY FOR SLEEP BUT ALSO FOR 2913 01:54:11,486 --> 01:54:12,220 DETECTING INTENT. 2914 01:54:12,220 --> 01:54:13,554 HOWEVER, ON THIS, WE HAVE 2915 01:54:13,554 --> 01:54:14,656 COMPUTER EVERYTHING. 2916 01:54:14,656 --> 01:54:15,623 I'M JUST SHOWING YOU A LITTLE 2917 01:54:15,623 --> 01:54:16,391 PART OF IT. 2918 01:54:16,391 --> 01:54:19,427 WE FOUND THAT THE INTERBRAIN 2919 01:54:19,427 --> 01:54:20,561 SYNCHRONY WAS -- IT'S STRONGER 2920 01:54:20,561 --> 01:54:23,164 IN THE GAMMA BAND WITH EEG. 2921 01:54:23,164 --> 01:54:24,299 THAT DOESN'T MEAN THAT IS NOT 2922 01:54:24,299 --> 01:54:26,267 HAPPENING IN OTHER BANDS OR 2923 01:54:26,267 --> 01:54:28,469 THAT -- YEAH. 2924 01:54:28,469 --> 01:54:33,441 SO WE HAVE -- I STARTED WORKING 2925 01:54:33,441 --> 01:54:35,410 THE INTERFACE OF THE -- 2926 01:54:35,410 --> 01:54:36,511 HUMANITIES IN 2014. 2927 01:54:36,511 --> 01:54:42,684 THE FIRST STUDY WE DID WAS A --T 2928 01:54:42,684 --> 01:54:47,455 THE MENIL COLLECTION WHERE WE 2929 01:54:47,455 --> 01:54:48,289 HAD PARTICIPANTS INSTRUMENT AND 2930 01:54:48,289 --> 01:54:50,191 GO THROUGH THE GALLERY AND 2931 01:54:50,191 --> 01:54:53,861 COLLECT DATA, AND WE PUBLISHED 2932 01:54:53,861 --> 01:54:57,265 THIS AND SOME ACTUALLY BY THE 2933 01:54:57,265 --> 01:55:01,002 FDA TO LOOK AT SIGNAL 2934 01:55:01,002 --> 01:55:01,803 CONSISTENCY AND THINGS LIKE 2935 01:55:01,803 --> 01:55:02,070 THAT. 2936 01:55:02,070 --> 01:55:03,404 THEY HAVE DEVELOPED A TOOL TO 2937 01:55:03,404 --> 01:55:07,108 ASSESS THE QUALITY OF THE 2938 01:55:07,108 --> 01:55:07,875 RECORDING. 2939 01:55:07,875 --> 01:55:10,144 SO THIS IS HOW I STARTED, NOW I 2940 01:55:10,144 --> 01:55:12,013 HAVE -- WE HAD DONE PAINTING, 2941 01:55:12,013 --> 01:55:14,182 DRAWING, EVEN CHILDREN, THIS IS 2942 01:55:14,182 --> 01:55:15,450 THE -- THAT DOESN'T HAVE ANY 2943 01:55:15,450 --> 01:55:18,286 RISK IS THAT YOU CAN ENGAGE 2944 01:55:18,286 --> 01:55:20,488 CHILDREN AS THEY DEVELOP ART OR 2945 01:55:20,488 --> 01:55:22,790 PLAY MUSIC OR THINGS LIKE THAT. 2946 01:55:22,790 --> 01:55:24,058 BUT THIS IS WHERE WE ARE GOING, 2947 01:55:24,058 --> 01:55:24,492 RIGHT? 2948 01:55:24,492 --> 01:55:26,894 AND THIS IS -- YOU KNOW, A DREAM 2949 01:55:26,894 --> 01:55:32,633 RIGHT NOW, BUT SO IF WE COMBINE 2950 01:55:32,633 --> 01:55:35,169 MUSIC AND DANCE TO GET REAL 2951 01:55:35,169 --> 01:55:36,037 WORLD DATA FROM THE BRAIN, 2952 01:55:36,037 --> 01:55:43,144 THROUGH EEG, FROM THE -- YOU CAN 2953 01:55:43,144 --> 01:55:46,280 HAVE OTHER -- ONE IS SKIN 2954 01:55:46,280 --> 01:55:46,981 RESPONSE, BLOOD PRESSURE AND 2955 01:55:46,981 --> 01:55:48,783 THINGS LIKE THAT, AND WHILE 2956 01:55:48,783 --> 01:55:52,887 ENGAGING THE PUBLIC, 2957 01:55:52,887 --> 01:55:55,289 DISSEMINATING, PROVIDING -- 2958 01:55:55,289 --> 01:55:57,458 AVENUES FOR THE PUBLIC TO LEARN 2959 01:55:57,458 --> 01:55:59,427 ABOUT THIS. 2960 01:55:59,427 --> 01:56:02,330 SO THEN YOU USE THE BCI 2961 01:56:02,330 --> 01:56:07,035 APPROACH, RIGHT, THE SINGLE 2962 01:56:07,035 --> 01:56:09,871 PROCESSING DECODING TO LOOK AT 2963 01:56:09,871 --> 01:56:11,372 NEUROMODULATION, FUNCTIONAL 2964 01:56:11,372 --> 01:56:17,145 MAPPING AND LEARN HOW MUSIC AND 2965 01:56:17,145 --> 01:56:18,246 DANCE AFFECT THE BRAIN, HOW IT 2966 01:56:18,246 --> 01:56:20,148 CAN BE DISSECTED IN DIFFERENT 2967 01:56:20,148 --> 01:56:21,049 NETWORKS, HOW YOU CAN AFFECT 2968 01:56:21,049 --> 01:56:23,117 THOSE NETWORKS THROUGH MUSIC AND 2969 01:56:23,117 --> 01:56:23,451 DANCE. 2970 01:56:23,451 --> 01:56:25,319 SO THINK ABOUT MUSIC, FOR 2971 01:56:25,319 --> 01:56:27,455 EXAMPLE, AS A NEUROSTIMULATOR OR 2972 01:56:27,455 --> 01:56:27,889 NEUROMODULATOR. 2973 01:56:27,889 --> 01:56:30,658 SO WE KNOW THAT HAS EFFECTS, 2974 01:56:30,658 --> 01:56:32,427 EVERYBODY REMEMBERS A SONG THAT 2975 01:56:32,427 --> 01:56:32,960 BRINGS EMOTION. 2976 01:56:32,960 --> 01:56:34,829 WE KNOW THAT MUSIC CAN TRIGGER 2977 01:56:34,829 --> 01:56:36,597 MEMORIES IN PEOPLE WITH 2978 01:56:36,597 --> 01:56:37,331 ALZHEIMER'S DISEASE. 2979 01:56:37,331 --> 01:56:40,468 IT'S JUST THAT WE DON'T KNOW HOW 2980 01:56:40,468 --> 01:56:45,506 TO PERSONALIZE THAT OR HOW TO 2981 01:56:45,506 --> 01:56:48,242 PRESCRIBE ART. 2982 01:56:48,242 --> 01:56:50,678 SO WHEN YOU COMBINE ALSO A.I., 2983 01:56:50,678 --> 01:56:51,913 MACHINE LEARNING, YOU KNOW, 2984 01:56:51,913 --> 01:56:54,849 GOING BACK TO EXPRESSIVE 2985 01:56:54,849 --> 01:56:59,353 ROBOTICS, WHERE YOU CAN PROGRAM 2986 01:56:59,353 --> 01:57:00,621 THE ASSISTIVE -- TO BE 2987 01:57:00,621 --> 01:57:01,689 FUNCTIONAL IN TERMS OF MOBILITY 2988 01:57:01,689 --> 01:57:05,960 BUT ALSO TO CAPTURE TO SOME 2989 01:57:05,960 --> 01:57:08,062 EXTENT YOUR -- STATE. 2990 01:57:08,062 --> 01:57:13,468 IT ALSO VERY IMPORTANT, 2991 01:57:13,468 --> 01:57:15,436 BIOMARKERS, AND DIFFERENT 2992 01:57:15,436 --> 01:57:17,305 PROGRAMS AT NIH AND THAT'S WHERE 2993 01:57:17,305 --> 01:57:17,839 WE ARE ON THAT. 2994 01:57:17,839 --> 01:57:19,707 OF COURSE IF WE GET THE 2995 01:57:19,707 --> 01:57:22,643 AVAILABLE DATA FROM THE BRAIN AS 2996 01:57:22,643 --> 01:57:25,046 YOU ARE ENGAGED IN MUSIC AND 2997 01:57:25,046 --> 01:57:33,421 DANCE ACTIVITY, AND YOU ARE ABLE 2998 01:57:33,421 --> 01:57:39,026 TO GET DATA TO TRAIN TO MACHINE 2999 01:57:39,026 --> 01:57:40,761 LEARNING TO KNOW WHAT MUSIC, YOU 3000 01:57:40,761 --> 01:57:42,930 NEED TO USE TO GAIN ACCESS TO A 3001 01:57:42,930 --> 01:57:43,598 PARTICULAR PART OF THE BRAIN, 3002 01:57:43,598 --> 01:57:45,666 THEN YOU CAN USE THAT MUSIC 3003 01:57:45,666 --> 01:57:50,438 LATER ON TO UP OR DOWNREGULATE 3004 01:57:50,438 --> 01:57:50,872 ACTIVITY THERE. 3005 01:57:50,872 --> 01:57:52,039 >> YOU ARE ALMOST DONE? 3006 01:57:52,039 --> 01:57:54,242 >> OH, I'M -- I'M DONE. 3007 01:57:54,242 --> 01:57:56,310 THIS IS THE LAST. 3008 01:57:56,310 --> 01:57:57,545 THANK YOU. 3009 01:57:57,545 --> 01:57:59,347 >> SO THANK YOU FOR TAKING US ON 3010 01:57:59,347 --> 01:58:01,549 A FANTASTIC JOURNEY. 3011 01:58:01,549 --> 01:58:03,084 I GUESS IF I EVER HEAR YOU SAY 3012 01:58:03,084 --> 01:58:04,819 CAN I PICK YOUR BRAIN, I'D 3013 01:58:04,819 --> 01:58:06,554 BETTER BE CAREFUL. 3014 01:58:06,554 --> 01:58:08,322 [LAUGHTER] 3015 01:58:08,322 --> 01:58:11,025 BUT THIS WAS GREAT. 3016 01:58:11,025 --> 01:58:13,728 YOU TOOK US IN A LOT OF 3017 01:58:13,728 --> 01:58:14,595 DIFFERENT -- AND I APPRECIATE 3018 01:58:14,595 --> 01:58:16,230 YOU REVIEWING THE LITERATURE ON 3019 01:58:16,230 --> 01:58:20,168 IT AND ALSO RAISING THE ETHICAL 3020 01:58:20,168 --> 01:58:21,335 ISSUES ABOUT THIS. 3021 01:58:21,335 --> 01:58:23,638 SO THANKS FOR PUTTING IT ALL 3022 01:58:23,638 --> 01:58:23,905 TOGETHER. 3023 01:58:23,905 --> 01:58:24,238 >> THANK YOU. 3024 01:58:24,238 --> 01:58:26,240 [APPLAUSE] 3025 01:58:26,240 --> 01:58:27,542 SO WE HAD ON THE SCHEDULE FOR 3026 01:58:27,542 --> 01:58:28,776 HAVING THE ELECTION, BUT SINCE 3027 01:58:28,776 --> 01:58:31,245 WE ONLY HAD ONE PERSON IN 3028 01:58:31,245 --> 01:58:34,081 NOMINATION FROM YESTERDAY, I 3029 01:58:34,081 --> 01:58:36,017 GUESS KATHLEEN HAS BECOME OUR 3030 01:58:36,017 --> 01:58:38,653 CHAIR STARTING AT THE CONCLUSION 3031 01:58:38,653 --> 01:58:40,288 OF OUR MAY MEETING. 3032 01:58:40,288 --> 01:58:41,789 SO BARBARA, WE APPRECIATE 3033 01:58:41,789 --> 01:58:42,456 BARBARA'S EFFORTS. 3034 01:58:42,456 --> 01:58:44,992 BARBARA IS GOING TO BE OUR CHAIR 3035 01:58:44,992 --> 01:58:46,060 THROUGH MAY. 3036 01:58:46,060 --> 01:58:48,563 KATHLEEN WILL BE OUR CHAIR IN 3037 01:58:48,563 --> 01:58:50,231 WAITING, AND WE'RE GOING TO NOW 3038 01:58:50,231 --> 01:58:51,933 TAKE A LITTLE LUNCH BREAK, AND 3039 01:58:51,933 --> 01:58:54,635 WE'LL RECONVENE AT 12:45. 3040 01:58:54,635 --> 01:58:57,371 WE HAVE A VERY INTERESTING 3041 01:58:57,371 --> 01:58:59,106 DISCUSSION ON STRATEGIES FOR 3042 01:58:59,106 --> 01:59:00,541 DOING COMMUNITY ENGAGED 3043 01:59:00,541 --> 01:59:02,343 RESEARCH. 3044 01:59:02,343 --> 01:59:06,080 SO I VERY MUCH ENCOURAGE YOU TO 3045 01:59:06,080 --> 01:59:09,584 TUNE IN TO THAT. 3046 01:59:09,584 --> 01:59:11,886 DOROTHY FARRAR EDWARDS AND JOY 3047 01:59:11,886 --> 01:59:13,788 HAMMEL ARE GOING TO BE GIVING 3048 01:59:13,788 --> 01:59:17,858 THAT TALK, SO WE'LL TAKE A BREAK 3049 01:59:17,858 --> 01:59:19,026 UNTIL 12:45 EASTERN STANDARD 3050 01:59:19,026 --> 01:59:19,627 TIME. 3051 01:59:19,627 --> 01:59:22,423 THANK YOU. 3052 01:59:22,423 --> 01:59:23,624 THANK YOU. 3053 01:59:23,624 --> 01:59:24,492 OKAY. 3054 01:59:24,492 --> 01:59:27,128 SO FOR OUR NEXT TALK, I AM 3055 01:59:27,128 --> 01:59:32,099 ABSOLUTELY DELIGHTED TO WELCOME 3056 01:59:32,099 --> 01:59:35,603 DOROTHY EDWARDS AND JOY HAMMEL. 3057 01:59:35,603 --> 01:59:37,138 DOROTHY IS FACULTY CONSULTANT 3058 01:59:37,138 --> 01:59:39,940 FOR THE UNIVERSITY OF WISCONSIN, 3059 01:59:39,940 --> 01:59:41,809 INSTITUTE FOR CLINICAL AND 3060 01:59:41,809 --> 01:59:45,880 TRANSLATIONAL RESEARCH FOR 3061 01:59:45,880 --> 01:59:46,847 COMMUNITY COLLABORATION. 3062 01:59:46,847 --> 01:59:51,719 SHE'S THE PHYLLIS DISTINGUISHED 3063 01:59:51,719 --> 01:59:52,553 ACHIEVEMENT PROFESSOR AND 3064 01:59:52,553 --> 01:59:53,821 PROFESSOR OF KINESIOLOGY IN 3065 01:59:53,821 --> 01:59:54,355 MEDICINE. 3066 01:59:54,355 --> 01:59:55,656 SHE'S THE ASSOCIATE DEAN FOR 3067 01:59:55,656 --> 02:00:01,128 RESEARCH FOR THE SCHOOL OF 3068 02:00:01,128 --> 02:00:02,630 EDUCATION, EFFECTS OF AGING ON 3069 02:00:02,630 --> 02:00:03,197 FUNCTIONAL INDEPENDENCE AND 3070 02:00:03,197 --> 02:00:04,665 QUALITY OF LIFE, AND SHE IS A 3071 02:00:04,665 --> 02:00:05,800 LONG TIME COLLEAGUE. 3072 02:00:05,800 --> 02:00:09,170 JOY HAMMEL IS THE WADE MEYER 3073 02:00:09,170 --> 02:00:11,739 ENDOWED CHAIR PROFESSOR DIRECTOR 3074 02:00:11,739 --> 02:00:13,574 OF GRADUATE STUDIES IN 3075 02:00:13,574 --> 02:00:14,608 DISABILITY AND HUMAN DEVELOPMENT 3076 02:00:14,608 --> 02:00:16,310 AND OCCUPATIONAL THERAPY AT 3077 02:00:16,310 --> 02:00:18,479 UNIVERSITY OF ILLINOIS-CHICAGO. 3078 02:00:18,479 --> 02:00:21,916 AND HER RESEARCH SPECIALTY IS 3079 02:00:21,916 --> 02:00:24,452 COMMUNITY-BASED PARTICIPATORY 3080 02:00:24,452 --> 02:00:25,986 ACTION RESEARCH AND SHE'S A 3081 02:00:25,986 --> 02:00:27,688 FORMER MEMBER OF THIS ADVISORY 3082 02:00:27,688 --> 02:00:28,689 BOARD. 3083 02:00:28,689 --> 02:00:34,061 SO DOROTHY, JOY, WELCOME. 3084 02:00:34,061 --> 02:00:34,995 I'M TURNING IT OVER TO YOU. 3085 02:00:34,995 --> 02:00:35,930 >> THANK YOU, BARBARA. 3086 02:00:35,930 --> 02:00:38,199 I WANT TO THANK YOU, BARBARA AND 3087 02:00:38,199 --> 02:00:39,633 DR. NITKIN FOR THIS INVITATION. 3088 02:00:39,633 --> 02:00:41,235 IT'S REALLY A PLEASURE TO BE 3089 02:00:41,235 --> 02:00:44,305 ABLE TO PRESENT TO YOUR ADVISORY 3090 02:00:44,305 --> 02:00:46,607 COMMITTEE, AND IT'S ACTUALLY A 3091 02:00:46,607 --> 02:00:47,675 REALLY DELIGHT TO BE ABLE TO 3092 02:00:47,675 --> 02:00:49,009 WORK WITH JOY HAMMEL ON ANY 3093 02:00:49,009 --> 02:00:50,077 PROJECT, SO THIS HAS BEEN REALLY 3094 02:00:50,077 --> 02:00:50,511 FUN. 3095 02:00:50,511 --> 02:00:52,213 THE ONE THING I WANT TO SAY IS 3096 02:00:52,213 --> 02:00:53,681 THAT JOY AND I DO VERY DIFFERENT 3097 02:00:53,681 --> 02:00:56,517 KINDS OF RESEARCH, BUT THE BASIC 3098 02:00:56,517 --> 02:00:57,985 MOTIVATING VALUES AND THEMES ARE 3099 02:00:57,985 --> 02:00:58,986 ESSENTIALLY THE SAME. 3100 02:00:58,986 --> 02:01:02,590 SO MY WORK IS OFTEN IN 3101 02:01:02,590 --> 02:01:04,225 RECRUITMENT FOR A LARGE 3102 02:01:04,225 --> 02:01:05,526 LONGITUDAL STUDIES OR CLINICAL 3103 02:01:05,526 --> 02:01:09,730 TRIALS, BUT IT STILL HAS A VERY 3104 02:01:09,730 --> 02:01:11,899 IMPORTANT ORIGIN IN 3105 02:01:11,899 --> 02:01:13,100 COMMUNITY-ENGAGED PROGRAMS AND 3106 02:01:13,100 --> 02:01:15,269 PROCESSES, AND JOY DOES 3107 02:01:15,269 --> 02:01:16,470 COMMUNITY-BASED PARTICIPATORY 3108 02:01:16,470 --> 02:01:17,571 RESEARCH, SO WE'RE GOING TO 3109 02:01:17,571 --> 02:01:19,840 SHARE BOTH HER PERSPECTIVES 3110 02:01:19,840 --> 02:01:20,775 TODAY, AND HOPEFULLY LOOKING 3111 02:01:20,775 --> 02:01:22,443 FORWARD TO A LIVELY DISCUSSION 3112 02:01:22,443 --> 02:01:24,378 WITH THE PANEL BECAUSE WE KNOW 3113 02:01:24,378 --> 02:01:25,713 YOU'RE HIGHLY INVESTED IN THESE 3114 02:01:25,713 --> 02:01:28,749 ISSUES AND TOPICS. 3115 02:01:28,749 --> 02:01:30,518 SO JOY, I'M TURNING IT OVER TO 3116 02:01:30,518 --> 02:01:30,851 YOU. 3117 02:01:30,851 --> 02:01:32,386 >> HELLO, EVERYONE. 3118 02:01:32,386 --> 02:01:34,789 AGAIN, MY NAME IS JOY HAMMEL. 3119 02:01:34,789 --> 02:01:37,057 IN ADDITION TO BEING A PROFESSOR 3120 02:01:37,057 --> 02:01:39,226 AT UIC, I ALSO IDENTIFY AS A 3121 02:01:39,226 --> 02:01:40,394 DISABLED WOMAN MYSELF AND A 3122 02:01:40,394 --> 02:01:41,495 MEMBER OF THE DISABILITY 3123 02:01:41,495 --> 02:01:42,830 COMMUNITY, SO I JUST WANTED TO 3124 02:01:42,830 --> 02:01:44,799 SITUATE THAT UP FRONT. 3125 02:01:44,799 --> 02:01:46,734 AND I'VE BEEN DOING COMMUNITY 3126 02:01:46,734 --> 02:01:50,204 ENGAGED RESEARCH I WITH THE 3127 02:01:50,204 --> 02:01:51,405 DISABILITY FOR 35-PLUS YEARS, SO 3128 02:01:51,405 --> 02:01:53,140 I'M GOING TO TRY TO JUGGLE A FEW 3129 02:01:53,140 --> 02:01:55,342 HATS HERE AS RESEARCHER, OT 3130 02:01:55,342 --> 02:01:56,343 HEALTH PROFESSIONAL AND A MEMBER 3131 02:01:56,343 --> 02:01:59,046 OF THE DISABILITY COMMUNITY. 3132 02:01:59,046 --> 02:02:00,881 AND BEFORE WE GET STARTED, BOTH 3133 02:02:00,881 --> 02:02:02,516 DOROTHY AND I WANTED TO 3134 02:02:02,516 --> 02:02:04,285 ACKNOWLEDGE AND THANK ALL OF THE 3135 02:02:04,285 --> 02:02:05,886 DISABILITY AND AGING COMMUNITY 3136 02:02:05,886 --> 02:02:06,887 MEMBERS AND ORGANIZATIONS THAT 3137 02:02:06,887 --> 02:02:09,056 HAVE BEEN INVOLVED IN ALL OF THE 3138 02:02:09,056 --> 02:02:10,791 DIFFERENT RESEARCH PROJECTS THAT 3139 02:02:10,791 --> 02:02:12,326 WE'LL BE SHARING WITH YOU TODAY. 3140 02:02:12,326 --> 02:02:14,728 AND ALSO ACKNOWLEDGE THAT THE 3141 02:02:14,728 --> 02:02:16,831 RESEARCH HAS BEEN FUNDED BY NIH 3142 02:02:16,831 --> 02:02:17,965 AS WELL AS THE NATIONAL 3143 02:02:17,965 --> 02:02:20,401 INSTITUTE OF DISABILITY, 3144 02:02:20,401 --> 02:02:21,035 INDEPENDENT LIVING AND 3145 02:02:21,035 --> 02:02:22,603 REHABILITATION RESEARCH, OR 3146 02:02:22,603 --> 02:02:24,672 NIDILRR. 3147 02:02:24,672 --> 02:02:25,973 WE'RE TRYING TO GET INTO FOUR 3148 02:02:25,973 --> 02:02:26,874 DIFFERENT THINGS IN THIS 3149 02:02:26,874 --> 02:02:27,741 PRESENTATION WITH YOU. 3150 02:02:27,741 --> 02:02:30,211 FIRST OF ALL, JUST TALKING ABOUT 3151 02:02:30,211 --> 02:02:31,445 WHAT COMMUNITY-ENGAGED RESEARCH 3152 02:02:31,445 --> 02:02:33,380 IS, AND HOW IT CAN CONTRIBUTE TO 3153 02:02:33,380 --> 02:02:34,482 OUTCOMES AND IMPACT. 3154 02:02:34,482 --> 02:02:36,116 AND THEN WE WANT TO STRATEGIZE 3155 02:02:36,116 --> 02:02:37,418 WITH YOU. 3156 02:02:37,418 --> 02:02:38,519 STRATEGIZING HOW TO DEVELOP 3157 02:02:38,519 --> 02:02:40,588 STRONG COMMUNITY PARTNERSHIPS, 3158 02:02:40,588 --> 02:02:43,090 PARTICULARLY WITH DISABILITY AND 3159 02:02:43,090 --> 02:02:44,191 AGING COMMUNITIES, ESPECIALLY 3160 02:02:44,191 --> 02:02:46,160 PEOPLE WHO ALSO COME FROM 3161 02:02:46,160 --> 02:02:47,228 UNDERREPRESENTED AND 3162 02:02:47,228 --> 02:02:49,296 MARGINALIZED COMMUNITIES. 3163 02:02:49,296 --> 02:02:50,931 STRATEGIZING WAYS TO MAKE THAT 3164 02:02:50,931 --> 02:02:52,666 ENGAGEMENT MORE ACCESSIBLE AND 3165 02:02:52,666 --> 02:02:54,668 INCLUSIVE AND PARTICIPATORY, AND 3166 02:02:54,668 --> 02:02:58,239 THEN ALSO HOW TO SUSTAIN THOSE 3167 02:02:58,239 --> 02:02:59,673 PARTNERSHIPS AND HOW TO GET TO 3168 02:02:59,673 --> 02:03:01,475 LONG-TERM SYSTEMS AND POLICY 3169 02:03:01,475 --> 02:03:02,843 CHANGES BECAUSE OF THAT ENGAGED 3170 02:03:02,843 --> 02:03:04,378 RESEARCH. 3171 02:03:04,378 --> 02:03:05,479 SO LET'S START OUT FIRST OF ALL 3172 02:03:05,479 --> 02:03:07,081 WITH JUST CENTERING ON WHAT 3173 02:03:07,081 --> 02:03:10,050 COMMUNITY ENGAGED RESEARCH IS. 3174 02:03:10,050 --> 02:03:10,851 WHAT YOU'RE SEEING HERE IS ONE 3175 02:03:10,851 --> 02:03:12,853 OF THE MOST WIDELY USED 3176 02:03:12,853 --> 02:03:13,287 DEFINITIONS FOR IT. 3177 02:03:13,287 --> 02:03:14,722 THIS IS MORE THAN ACADEMIC 3178 02:03:14,722 --> 02:03:15,723 DEFINITION, RIGHT, FROM THE 3179 02:03:15,723 --> 02:03:19,426 CENTERS FOR DISEASE CONTROL. 3180 02:03:19,426 --> 02:03:20,828 THAT TALKS ABOUT IT INVOLVES 3181 02:03:20,828 --> 02:03:21,896 WORKING COLLABORATIVELY WITH AND 3182 02:03:21,896 --> 02:03:22,796 THROUGH GROUPS OF PEOPLE. 3183 02:03:22,796 --> 02:03:24,331 SO WHEN WE'RE THINKING ABOUT 3184 02:03:24,331 --> 02:03:26,901 COMMUNITY HERE, IT CAN LOOK VERY 3185 02:03:26,901 --> 02:03:27,902 DIFFERENT, AND THERE'S LOTS OF 3186 02:03:27,902 --> 02:03:28,669 DIFFERENT TYPES OF COMMUNITIES. 3187 02:03:28,669 --> 02:03:29,837 SO IT MIGHT BE THAT PEOPLE LIVE 3188 02:03:29,837 --> 02:03:32,473 IN THE SAME NEIGHBORHOOD OR 3189 02:03:32,473 --> 02:03:33,574 GEOGRAPHY, IT MIGHT MEAN THAT 3190 02:03:33,574 --> 02:03:36,076 THEY HAVE A SHARED SITUATION OR 3191 02:03:36,076 --> 02:03:37,811 ISSUE THAT THEY'RE WORKING ON. 3192 02:03:37,811 --> 02:03:39,380 THEY MAY HAVE A SHARED IDENTITY, 3193 02:03:39,380 --> 02:03:41,181 AND IT MIGHT EVEN BE VIRTUAL 3194 02:03:41,181 --> 02:03:42,082 COMMUNITIES, RIGHT? 3195 02:03:42,082 --> 02:03:43,517 SO WITH THIS KIND OF RESEARCH, 3196 02:03:43,517 --> 02:03:46,987 WHAT WE REALLY ARE FOCUSING ON, 3197 02:03:46,987 --> 02:03:48,255 THOUGH, IS AFFECTING THE HEALTH 3198 02:03:48,255 --> 02:03:49,356 AND WELL-BEING OF THESE 3199 02:03:49,356 --> 02:03:50,691 COMMUNITIES AS WELL AS AT THE 3200 02:03:50,691 --> 02:03:51,659 POPULATION LEVEL. 3201 02:03:51,659 --> 02:03:53,060 AND HOPEFULLY THIS KIND OF 3202 02:03:53,060 --> 02:03:54,929 RESEARCH IS ALSO A CATALYST THEN 3203 02:03:54,929 --> 02:03:56,797 FOR CHANGING POLICIES, PROGRAMS 3204 02:03:56,797 --> 02:03:58,966 AND PRACTICES AS WELL AT THAT 3205 02:03:58,966 --> 02:04:01,802 POPULATION LEVEL. 3206 02:04:01,802 --> 02:04:03,871 BUT ASIDE FROM THE ACADEMIC 3207 02:04:03,871 --> 02:04:05,739 DEFINITION, I DO WANT TO FOCUS 3208 02:04:05,739 --> 02:04:08,208 IN TO SAY THAT COMMUNITY-ENGAGED 3209 02:04:08,208 --> 02:04:09,743 RESEARCH HAS A REALLY RICH 3210 02:04:09,743 --> 02:04:12,680 HISTORY AND ROOTS, FROM WITHIN 3211 02:04:12,680 --> 02:04:13,247 AND WITH COMMUNITIES. 3212 02:04:13,247 --> 02:04:19,253 ON THE LEFT YOU'RE SEEING PAOLO 3213 02:04:19,253 --> 02:04:20,888 FRIERE, ONE OF THE GRANDDADDIES 3214 02:04:20,888 --> 02:04:22,756 OF PARTICIPATORY RESEARCH OR PAR 3215 02:04:22,756 --> 02:04:24,658 RESEARCH IN BRAZIL, PARTICULARLY 3216 02:04:24,658 --> 02:04:25,326 WORKING WITH COMMUNITIES THAT 3217 02:04:25,326 --> 02:04:27,094 HAVE BEEN MARGINALIZED AND 3218 02:04:27,094 --> 02:04:28,362 OPPRESSED SO THAT THEY CAN GAIN 3219 02:04:28,362 --> 02:04:29,563 POWER FROM WITHIN. 3220 02:04:29,563 --> 02:04:30,998 AND THEN OVER ON THE RIGHT HERE, 3221 02:04:30,998 --> 02:04:32,633 YOU'RE SEEING MORE HOW THAT GOT 3222 02:04:32,633 --> 02:04:36,036 APPLIED IN WHAT'S CALLED CBPR OR 3223 02:04:36,036 --> 02:04:37,871 COMMUNITY-BASED PARTICIPATORY 3224 02:04:37,871 --> 02:04:38,639 RESEARCH. 3225 02:04:38,639 --> 02:04:40,474 SO APPLIED BY HEALTH RESEARCHERS 3226 02:04:40,474 --> 02:04:42,676 ON HOW TO COLLABORATE WITH THAT 3227 02:04:42,676 --> 02:04:44,211 COMMUNITY TO DIRECTLY IMPACT 3228 02:04:44,211 --> 02:04:48,482 HEALTH OUTCOMES. 3229 02:04:48,482 --> 02:04:49,450 WHAT YOU'RE SEEING ON THIS 3230 02:04:49,450 --> 02:04:50,884 SLIDE, THOUGH, IS MORE FROM THE 3231 02:04:50,884 --> 02:04:51,852 DISABILITY COMMUNITY THAT WE'RE 3232 02:04:51,852 --> 02:04:53,487 FOCUSING IN ON SPECIFICALLY 3233 02:04:53,487 --> 02:04:54,221 HERE. 3234 02:04:54,221 --> 02:04:55,623 TO SHOW YOU THAT THEY, TOO, HAVE 3235 02:04:55,623 --> 02:04:58,492 A VERY LONG HISTORY OF 3236 02:04:58,492 --> 02:04:59,827 OPPRESSION AND MARGINALIZATION. 3237 02:04:59,827 --> 02:05:02,529 NOT ONLY RELATED TO ACCESSING 3238 02:05:02,529 --> 02:05:04,064 HEALTHCARE, BUT ALSO IN HOW 3239 02:05:04,064 --> 02:05:06,900 THEY'VE BEEN TREATED IN PRIOR 3240 02:05:06,900 --> 02:05:07,167 RESEARCH. 3241 02:05:07,167 --> 02:05:08,636 SO THERE'S A REASON TO FOCUS IN 3242 02:05:08,636 --> 02:05:10,504 ON THIS COMMUNITY AND TO FOCUS 3243 02:05:10,504 --> 02:05:13,140 IN ON THAT MANTRA THAT THEY PUT 3244 02:05:13,140 --> 02:05:16,377 FORTHRIGHT IN THE MI MIDDLE HER, 3245 02:05:16,377 --> 02:05:18,379 THE NOTHING ABOUT US WITHOUT US. 3246 02:05:18,379 --> 02:05:23,384 THERE'S OTHER REASONS TO FOCUS 3247 02:05:23,384 --> 02:05:24,485 IN UNDER THE DISABILITY 3248 02:05:24,485 --> 02:05:25,252 COMMUNITY RIGHT NOW AS WELL. 3249 02:05:25,252 --> 02:05:26,987 WHAT YOU'RE SEEING HERE IS AN 3250 02:05:26,987 --> 02:05:27,521 INFOGRAPHIC FROM THE CDC. 3251 02:05:27,521 --> 02:05:28,956 THAT'S PART OF THEIR DISABILITY 3252 02:05:28,956 --> 02:05:30,691 IMPACTS ALL OF US INITIATIVE, 3253 02:05:30,691 --> 02:05:32,826 AND SHOWING THAT IN THE UNITED 3254 02:05:32,826 --> 02:05:34,962 STATES RIGHT NOW, ADULTS HAVE A 3255 02:05:34,962 --> 02:05:35,929 1 IN 4 CHANCE OF HAVING SOME 3256 02:05:35,929 --> 02:05:37,665 KIND OF A DISABILITY. 3257 02:05:37,665 --> 02:05:39,867 WHICH IS VERY HIGH. 3258 02:05:39,867 --> 02:05:41,235 AND YOU CAN SEE UNDERNEATH THAT 3259 02:05:41,235 --> 02:05:42,569 THE TYPES OF DIVERSE 3260 02:05:42,569 --> 02:05:44,438 DISABILITIES THAT PEOPLE MIGHT 3261 02:05:44,438 --> 02:05:45,506 EXPERIENCE. 3262 02:05:45,506 --> 02:05:48,475 AND OVER ON THE RIGHT, YOU CAN 3263 02:05:48,475 --> 02:05:49,710 SEE THAT PEOPLE WITH 3264 02:05:49,710 --> 02:05:51,679 DISABILITIES AS A GROUP 3265 02:05:51,679 --> 02:05:54,148 EXPERIENCE SOME VERY SIGNIFICANT 3266 02:05:54,148 --> 02:05:55,582 SOCIAL DETERMINANTS OF HEALTH 3267 02:05:55,582 --> 02:05:56,684 THAT PREVENT THEM OR MAKE IT 3268 02:05:56,684 --> 02:05:59,086 VERY DIFFICULT FOR THEM TO 3269 02:05:59,086 --> 02:06:00,054 ACCESS HEALTHCARE AS WELL AS TO 3270 02:06:00,054 --> 02:06:01,455 BE INVOLVED IN ANY KIND OF 3271 02:06:01,455 --> 02:06:02,756 RESEARCH. 3272 02:06:02,756 --> 02:06:04,158 SO IT IMPORTANT TO ACKNOWLEDGE 3273 02:06:04,158 --> 02:06:07,661 THIS, AND NOT ONLY THAT, NIH HAS 3274 02:06:07,661 --> 02:06:09,596 RECENTLY REALLY ACKNOWLEDGED THE 3275 02:06:09,596 --> 02:06:10,464 DISABILITY COMMUNITY IN VERY 3276 02:06:10,464 --> 02:06:11,665 SPECIFIC WAYS. 3277 02:06:11,665 --> 02:06:16,704 FIRST OF ALL, NIMHD HAS NOW 3278 02:06:16,704 --> 02:06:17,604 DECLARED DISABILITY AS ONE OF 3279 02:06:17,604 --> 02:06:21,075 THE DISPARITIES GROUPS THAT 3280 02:06:21,075 --> 02:06:23,911 EXPERIENCES NATIONAL 3281 02:06:23,911 --> 02:06:24,578 DISPARITIES, AS WELL AS WITHIN 3282 02:06:24,578 --> 02:06:26,313 NIH NOW, YOU'RE SEEING A 3283 02:06:26,313 --> 02:06:27,648 CRITERIA NOW THAT SAYS THAT THEY 3284 02:06:27,648 --> 02:06:29,717 WANT YOU TO TALK ABOUT HOW YOU 3285 02:06:29,717 --> 02:06:31,118 WILL ENGAGE THIS COMMUNITY, AND 3286 02:06:31,118 --> 02:06:32,786 HOW YOU WILL REPRESENT THEIR 3287 02:06:32,786 --> 02:06:33,454 LIVED EXPERIENCE. 3288 02:06:33,454 --> 02:06:35,522 SO IT'S A GOOD TIME TO CONSIDER 3289 02:06:35,522 --> 02:06:36,790 THINKING ABOUT COMMUNITY-ENGAGED 3290 02:06:36,790 --> 02:06:38,859 RESEARCH. 3291 02:06:38,859 --> 02:06:40,394 SO WHAT DOES IT LOOK LIKE? 3292 02:06:40,394 --> 02:06:42,129 I LIKE THIS GRAPHIC FROM 3293 02:06:42,129 --> 02:06:48,268 PENICILLIN PENNSTATE AND THEIR . 3294 02:06:48,268 --> 02:06:49,903 THEY DO THESE THINGS CALLED THE 3295 02:06:49,903 --> 02:06:51,205 CHEER TOOLKIT THAT YOU CAN SEE A 3296 02:06:51,205 --> 02:06:52,306 LINK TO ON THE BOTTOM. 3297 02:06:52,306 --> 02:06:55,576 REALLY EXCELLENT RESOURCES BOTH 3298 02:06:55,576 --> 02:06:56,677 FOR HEALTHCARE RESEARCHERS THAT 3299 02:06:56,677 --> 02:06:57,644 WANT TO DO THIS BUT ALSO 3300 02:06:57,644 --> 02:06:58,946 VERSIONS OF IT FOR COMMUNITY 3301 02:06:58,946 --> 02:07:00,047 MEMBERS THAT WANT TO ENGAGE IN 3302 02:07:00,047 --> 02:07:02,349 IT AND I HIGHLY RECOMMEND THESE. 3303 02:07:02,349 --> 02:07:03,784 I REALLY LIKE THEIR GRAPHIC HERE 3304 02:07:03,784 --> 02:07:04,985 THAT SHOWS YOU THAT THERE'S A 3305 02:07:04,985 --> 02:07:06,253 CONTINUUM OF COMMUNITY-ENGAGED 3306 02:07:06,253 --> 02:07:10,324 RESEARCH THAT YOU CAN ENGAGE IN. 3307 02:07:10,324 --> 02:07:11,592 AND HAVE DIFFERENT LEVELS OF 3308 02:07:11,592 --> 02:07:12,192 COMMUNITY ENGAGEMENT. 3309 02:07:12,192 --> 02:07:13,827 SO OVER ON THE LEFT SIDE, THESE 3310 02:07:13,827 --> 02:07:15,362 ARE MORE WHERE HEALTHCARE 3311 02:07:15,362 --> 02:07:17,765 RESEARCHERS ARE STILL LEADING 3312 02:07:17,765 --> 02:07:20,067 THE RESEARCH AND MAYBE THEY'RE 3313 02:07:20,067 --> 02:07:21,135 BRINGING BACK AND INFORMING AND 3314 02:07:21,135 --> 02:07:23,303 CONSULTING WITH THE COMMUNITY. 3315 02:07:23,303 --> 02:07:24,505 WHEREAS THE MORE YOU GO TO THE 3316 02:07:24,505 --> 02:07:26,373 RIGHT ON THIS GRAPHIC, THE MORE 3317 02:07:26,373 --> 02:07:28,809 YOU GET THE COMMUNITY 3318 02:07:28,809 --> 02:07:29,977 PARTICIPATING, INITIATING, EVEN 3319 02:07:29,977 --> 02:07:32,613 LEADING THAT RESEARCH, AND THE 3320 02:07:32,613 --> 02:07:34,448 MORE OPPORTUNITIES YOU GET FOR 3321 02:07:34,448 --> 02:07:36,583 COMMUNITY EMPOWERMENT AND 3322 02:07:36,583 --> 02:07:37,684 CAPACITY BUILDING, AS WELL AS 3323 02:07:37,684 --> 02:07:41,722 FOR LONG TERM SYSTEMS CHANGE. 3324 02:07:41,722 --> 02:07:43,690 WE ALSO HAVE A GROWING BODY OF 3325 02:07:43,690 --> 02:07:45,092 EVIDENCE ON THE POSITIVE IMPACT 3326 02:07:45,092 --> 02:07:46,026 OF COMMUNITY-ENGAGED RESEARCH, 3327 02:07:46,026 --> 02:07:48,028 AND I FORWARD YOU OVER TO THIS 3328 02:07:48,028 --> 02:07:49,563 REPORT ON THE RIGHT, PRINCIPLES 3329 02:07:49,563 --> 02:07:50,931 OF COMMUNITY ENGAGEMENT, DONE BY 3330 02:07:50,931 --> 02:07:53,967 THE CTSA NETWORK AND A NUMBER OF 3331 02:07:53,967 --> 02:07:55,035 OTHER FEDERAL COLLABORATORS FOR 3332 02:07:55,035 --> 02:07:57,437 SOME REALLY EXCELLENT OVERVIEW 3333 02:07:57,437 --> 02:07:58,672 OF THE EVIDENCE HERE. 3334 02:07:58,672 --> 02:07:59,439 BUT SOME OF THE THINGS THEY 3335 02:07:59,439 --> 02:08:00,874 POINT TO IS, WHEN YOU'RE ABLE TO 3336 02:08:00,874 --> 02:08:02,276 ENGAGE WITH THE COMMUNITY, 3337 02:08:02,276 --> 02:08:04,244 YOU'RE MORE LIKELY TO HAVE 3338 02:08:04,244 --> 02:08:05,345 CULTURALLY AND SOCIALLY RELEVANT 3339 02:08:05,345 --> 02:08:07,781 STUDY DESIGNS AND DELIVERY 3340 02:08:07,781 --> 02:08:11,018 MECHANISMS, AND BECAUSE OF THAT, 3341 02:08:11,018 --> 02:08:11,885 THEY'RE MORE LIKELY TO BE USED 3342 02:08:11,885 --> 02:08:13,220 BY COMMUNITIES AND TO RESULT IN 3343 02:08:13,220 --> 02:08:14,521 MEANINGFUL OUTCOMES, ESPECIALLY 3344 02:08:14,521 --> 02:08:16,757 FOR MARGINALIZED COMMUNITIES. 3345 02:08:16,757 --> 02:08:18,058 THEY ALSO ARE MORE LIKELY TO 3346 02:08:18,058 --> 02:08:19,593 HAVE INCREASED KNOWLEDGE 3347 02:08:19,593 --> 02:08:21,461 TRANSLATION AND IMPLEMENTATION 3348 02:08:21,461 --> 02:08:22,863 BECAUSE THOSE INTERVENTIONS HAVE 3349 02:08:22,863 --> 02:08:26,600 BEEN CO-CREATED TOGETHER. 3350 02:08:26,600 --> 02:08:28,335 THEY'RE MORE LIKELY TO LEAD TO 3351 02:08:28,335 --> 02:08:29,069 INCREASED COMMUNITY CAPACITY TO 3352 02:08:29,069 --> 02:08:30,170 BUILD THEIR POWER FROM WITHIN 3353 02:08:30,170 --> 02:08:31,471 THAT COMMUNITY SO THAT THEY CAN 3354 02:08:31,471 --> 02:08:33,540 TAKE ACTIONS, AND THEY'RE ALSO 3355 02:08:33,540 --> 02:08:35,509 MORE LIKELY TO RESULT IN SYSTEMS 3356 02:08:35,509 --> 02:08:38,245 AND POLICY CHANGES THAT CAN 3357 02:08:38,245 --> 02:08:39,580 BENEFIT ENTIRE LARGER 3358 02:08:39,580 --> 02:08:42,916 COMMUNITIES AND POPULATIONS. 3359 02:08:42,916 --> 02:08:44,017 AND SO THE OTHER THING TO THINK 3360 02:08:44,017 --> 02:08:46,086 ABOUT, THOUGH, WITH 3361 02:08:46,086 --> 02:08:47,387 COMMUNITY-ENGAGED RESEARCH, 3362 02:08:47,387 --> 02:08:48,355 PARTICULARLY THE DISABILITY 3363 02:08:48,355 --> 02:08:49,890 COMMUNITY WANTS YOU TO THINK OF 3364 02:08:49,890 --> 02:08:50,991 THESE THINGS, THESE ARE 3365 02:08:50,991 --> 02:08:54,494 IMPORTANT ISSUES OR CHALLENGES 3366 02:08:54,494 --> 02:08:55,796 TO YOU IF YOU ARE GOING TO TAKE 3367 02:08:55,796 --> 02:08:56,797 ON THIS KIND OF RESEARCH OF 3368 02:08:56,797 --> 02:08:57,764 THINGS TO THINK ABOUT AND TO 3369 02:08:57,764 --> 02:09:02,269 BUILD INTO YOUR PROJECTS. 3370 02:09:02,269 --> 02:09:03,470 SO THE FIRST ONE IS 3371 02:09:03,470 --> 02:09:04,104 REPRESENTATION AND DIVERSE 3372 02:09:04,104 --> 02:09:04,438 INCLUSION. 3373 02:09:04,438 --> 02:09:05,973 A LOT OF TIMES IN THE DISABILITY 3374 02:09:05,973 --> 02:09:08,475 COMMUNITY, WE SEE THE ONE TOKEN 3375 02:09:08,475 --> 02:09:10,010 DISABLED PERSON ON AN ADVISORY 3376 02:09:10,010 --> 02:09:11,511 BOARD, OR THE ONE THAT PEOPLE 3377 02:09:11,511 --> 02:09:16,383 CALL ON AGAIN AND AGAIN. 3378 02:09:16,383 --> 02:09:17,251 AND THE DISABILITY COMMUNITY 3379 02:09:17,251 --> 02:09:18,785 WANTS TO SAY TO YOU, GO BEYOND 3380 02:09:18,785 --> 02:09:19,953 THAT. 3381 02:09:19,953 --> 02:09:22,489 GET GRASSROOTS REPRESENTATION OF 3382 02:09:22,489 --> 02:09:23,357 PEOPLE FROM THE COMMUNITY THAT 3383 02:09:23,357 --> 02:09:23,991 REPRESENT DIFFERENT ASPECTS OF 3384 02:09:23,991 --> 02:09:24,458 IT. 3385 02:09:24,458 --> 02:09:25,659 ALONG WITH THAT, THEN, MAKE SURE 3386 02:09:25,659 --> 02:09:27,194 YOU'RE GIVING VOICE TO THE 3387 02:09:27,194 --> 02:09:27,461 COMMUNITY. 3388 02:09:27,461 --> 02:09:28,662 AND WHEN I TALK ABOUT VOICE, 3389 02:09:28,662 --> 02:09:30,597 IT'S NOT JUST MY ABILITY TO 3390 02:09:30,597 --> 02:09:33,433 PHYSICALLY SPEAK. 3391 02:09:33,433 --> 02:09:34,534 THIS ASK MORE ABOUT DO I HAVE A 3392 02:09:34,534 --> 02:09:36,169 FOOT IN THE DOOR, A WHEEL IN THE 3393 02:09:36,169 --> 02:09:38,906 DOOR, A SEAT AT THE TABLE, ARE 3394 02:09:38,906 --> 02:09:40,207 MY PERSPECTIVES HEARD AND 3395 02:09:40,207 --> 02:09:42,175 LISTENED TO? 3396 02:09:42,175 --> 02:09:44,044 AND NOT ONLY THAT, BUT ARE THEY 3397 02:09:44,044 --> 02:09:51,785 RESPECTED AND RESPONDED TO? 3398 02:09:51,785 --> 02:09:53,086 THEY ALSO TALK ABOUT NEEDING TO 3399 02:09:53,086 --> 02:09:55,188 HAVE ACCESSIBLE, EQUITABLE AND 3400 02:09:55,188 --> 02:09:56,456 MEANINGFUL PARTICIPATION WHICH 3401 02:09:56,456 --> 02:09:57,491 WE WILL BE HIGHLIGHTING QUITE A 3402 02:09:57,491 --> 02:09:58,358 BIT THROUGHOUT THIS PRESENTATION 3403 02:09:58,358 --> 02:09:59,660 AND THEY POINT TO IS THE 3404 02:09:59,660 --> 02:10:01,962 RESEARCH RESPONDING TO AND 3405 02:10:01,962 --> 02:10:02,696 STRATEGIZING SOCIETAL BARRIERS 3406 02:10:02,696 --> 02:10:04,464 THAT THEY'RE FACING ON A DAILY 3407 02:10:04,464 --> 02:10:04,798 BASES. 3408 02:10:04,798 --> 02:10:08,302 THINGS LIKE STRUCTURAL ABLEISM, 3409 02:10:08,302 --> 02:10:09,703 AGEISM, RACISM AND OTHER SOCIAL 3410 02:10:09,703 --> 02:10:10,470 DETERMINANTS OF HEALTH THAT MAKE 3411 02:10:10,470 --> 02:10:12,005 IT REALLY DIFFICULT FOR THEM TO 3412 02:10:12,005 --> 02:10:15,309 PARTICIPATE IN RESEARCH. 3413 02:10:15,309 --> 02:10:16,376 THEY ALSO TALK ABOUT IS THE 3414 02:10:16,376 --> 02:10:17,678 RESEARCH GIVING THEM POWER, 3415 02:10:17,678 --> 02:10:20,447 CONTROL, OWNERSHIP AND 3416 02:10:20,447 --> 02:10:21,081 LEADERSHIP OPPORTUNITIES WITHIN 3417 02:10:21,081 --> 02:10:21,448 THAT COMMUNITY. 3418 02:10:21,448 --> 02:10:22,749 AND THEN FINALLY, THE ONE THAT I 3419 02:10:22,749 --> 02:10:26,119 HEAR THE MOST, HOW WILL THIS 3420 02:10:26,119 --> 02:10:27,854 MOVE US TO ACTION, ACTION, 3421 02:10:27,854 --> 02:10:28,221 ACTION. 3422 02:10:28,221 --> 02:10:29,389 IS THE RESEARCH GOING TO BENEFIT 3423 02:10:29,389 --> 02:10:31,892 THE COMMUNITY DIRECTLY, HOW WILL 3424 02:10:31,892 --> 02:10:33,527 IT BENEFIT, AND HOW CAN THEY USE 3425 02:10:33,527 --> 02:10:34,628 THE EVIDENCE FROM IT THAT 3426 02:10:34,628 --> 02:10:36,263 THEY'RE DOING TOGETHER TO TAKE 3427 02:10:36,263 --> 02:10:39,132 ACTION TO IMPROVE OPPORTUNITIES 3428 02:10:39,132 --> 02:10:43,070 FOR THE DISABILITY COMMUNITY. 3429 02:10:43,070 --> 02:10:44,438 SO WITH THAT, I'M GOING TO PASS 3430 02:10:44,438 --> 02:10:46,039 IT OVER TO DOROTHY TO GET INTO 3431 02:10:46,039 --> 02:10:46,974 OUR FIRST SET OF EXAMPLES. 3432 02:10:46,974 --> 02:10:47,774 >> THANKS, JOY. 3433 02:10:47,774 --> 02:10:52,145 SO I WANTED TO TALK ABOUT 3434 02:10:52,145 --> 02:10:52,980 COMMUNITY ENGAGEMENT AND 3435 02:10:52,980 --> 02:10:53,847 COMMUNITY ENGAGEMENT RESEARCH 3436 02:10:53,847 --> 02:10:54,915 THROUGH THE LENS OF RECRUITMENT 3437 02:10:54,915 --> 02:10:55,248 SCIENCE. 3438 02:10:55,248 --> 02:10:57,217 SO RECRUITMENT SCIENCE IS A 3439 02:10:57,217 --> 02:10:58,785 RELATIVELY NEW TERM FOR THE 3440 02:10:58,785 --> 02:11:00,087 THING THAT WE ALL TRY TO DO, 3441 02:11:00,087 --> 02:11:02,055 WHICH IS TO ACTUALLY ENGAGE 3442 02:11:02,055 --> 02:11:08,862 INDIVIDUALS IN OUR RESEARCH. 3443 02:11:08,862 --> 02:11:11,031 SO RESEARCH PARTICIPATION IS A 3444 02:11:11,031 --> 02:11:11,365 BEHAVIOR. 3445 02:11:11,365 --> 02:11:13,000 I'M A PSYCHOLOGIST AND BEHAVIORS 3446 02:11:13,000 --> 02:11:16,269 CAN BE PREDICTABLE. 3447 02:11:16,269 --> 02:11:18,238 BUT THE DECISION TO PARTICIPATE 3448 02:11:18,238 --> 02:11:20,640 IN A RESEARCH PROGRAM AND 3449 02:11:20,640 --> 02:11:22,175 PROJECT DEPENDS ON A NUMBER OF 3450 02:11:22,175 --> 02:11:24,711 DIFFERENT FACTORS, AND I WOULD 3451 02:11:24,711 --> 02:11:26,346 LIKE TO MAKE THE POINT VERY 3452 02:11:26,346 --> 02:11:28,415 CLEARLY THAT RANDOMIZED CONTROL 3453 02:11:28,415 --> 02:11:30,417 TRIAL PARTICIPATION INSIDE OF A 3454 02:11:30,417 --> 02:11:33,887 HOSPITAL OR OTHER LONG-TERM CARE 3455 02:11:33,887 --> 02:11:35,088 REHABILITATION FACILITY BEGINS 3456 02:11:35,088 --> 02:11:36,957 IN THE COMMUNITY. 3457 02:11:36,957 --> 02:11:38,025 IF PEOPLE IN THE COMMUNITY DON'T 3458 02:11:38,025 --> 02:11:39,659 SEE THAT INSTITUTION AS A PLACE 3459 02:11:39,659 --> 02:11:40,794 WHERE, A, THEY WANT TO RECEIVE 3460 02:11:40,794 --> 02:11:44,965 CARE OR. ABOUT, B, THEY WILLE 3461 02:11:44,965 --> 02:11:46,233 EXCELLENT CARE THAT IS ATTENTIVE 3462 02:11:46,233 --> 02:11:48,435 AND RESPONSIVE TO THEIR NEEDS, 3463 02:11:48,435 --> 02:11:49,970 THE LIKELIHOOD OF RECRUITING A 3464 02:11:49,970 --> 02:11:52,139 SAMPLE THAT'S REPRESENTATIVE IS 3465 02:11:52,139 --> 02:11:53,040 UNLIKELY. 3466 02:11:53,040 --> 02:11:55,876 AND THIS IS AN OLE SLIDE. 3467 02:11:55,876 --> 02:11:56,209 OLD SLIDE. 3468 02:11:56,209 --> 02:11:57,411 THIS GOES UP TO 2010, BUT I 3469 02:11:57,411 --> 02:11:58,812 COULD ACTUALLY -- I USE THIS 3470 02:11:58,812 --> 02:12:00,280 BECAUSE I HAD IT. 3471 02:12:00,280 --> 02:12:01,214 I COULD RE-CREATE THIS SLIDE 3472 02:12:01,214 --> 02:12:02,649 FROM DATA FROM TWO YEARS AGO AND 3473 02:12:02,649 --> 02:12:05,719 IT WOULDN'T LOOK ANY DIFFERENT. 3474 02:12:05,719 --> 02:12:06,920 SO BASICALLY THE PROBLEM IS, IS 3475 02:12:06,920 --> 02:12:08,355 THAT RANDOMIZED CONTROL TRIALS, 3476 02:12:08,355 --> 02:12:10,424 WHICH IS OUR STANDARD FOR 3477 02:12:10,424 --> 02:12:14,661 EVIDENCE FOR INTERVENTIONS, ARE 3478 02:12:14,661 --> 02:12:17,431 SERIOUSLY AND TRAGICALLY 3479 02:12:17,431 --> 02:12:18,732 UNDERENROLLED, PARTICULARLY WITH 3480 02:12:18,732 --> 02:12:19,833 INDIVIDUALS WITH DISABILITY OR 3481 02:12:19,833 --> 02:12:21,468 FROM OTHER UNDERREPRESENTED 3482 02:12:21,468 --> 02:12:21,935 GROUPS. 3483 02:12:21,935 --> 02:12:23,870 20 TO 40% OF TRIALS CLOSE 3484 02:12:23,870 --> 02:12:25,639 WITHOUT EVER REACHING THEIR 3485 02:12:25,639 --> 02:12:27,607 ENROLLMENT NUMBERS, AND WE SEE 3486 02:12:27,607 --> 02:12:29,142 THAT THE INDIVIDUALS WHO BEAR 3487 02:12:29,142 --> 02:12:31,645 THE GREATEST BURDEN OF DISEASE 3488 02:12:31,645 --> 02:12:33,280 OR DISABLING CONDITIONS ARE THE 3489 02:12:33,280 --> 02:12:34,648 ONES LEAST LIKELY TO BE ENROLLED 3490 02:12:34,648 --> 02:12:36,249 IN THE TRIALS, WHICH THEN 3491 02:12:36,249 --> 02:12:37,451 QUESTIONS WHAT THE UTILITY OF 3492 02:12:37,451 --> 02:12:40,087 THESE TRIALS ARE OTHER THAN 3493 02:12:40,087 --> 02:12:40,854 PRODUCING EVIDENCE AND GREAT 3494 02:12:40,854 --> 02:12:41,922 PAPERS FOR THOSE OF US WHO DO 3495 02:12:41,922 --> 02:12:45,325 THEM. 3496 02:12:45,325 --> 02:12:46,726 SO WHAT ARE THE CONSEQUENCES OF 3497 02:12:46,726 --> 02:12:48,161 FAILURE TO RECRUIT AND RETAIN 3498 02:12:48,161 --> 02:12:48,662 PARTICIPANTS? 3499 02:12:48,662 --> 02:12:49,796 I'M NOT TELLING ANY OF YOU 3500 02:12:49,796 --> 02:12:51,364 THINGS THAT YOU DON'T KNOW, BUT 3501 02:12:51,364 --> 02:12:52,232 I JUST WANT TO BRING THESE 3502 02:12:52,232 --> 02:12:53,900 ISSUES TO THE FOREFRONT. 3503 02:12:53,900 --> 02:12:55,969 FIRST OF ALL, FROM A 3504 02:12:55,969 --> 02:12:58,605 METHODOLOGICAL PERSPECTIVE, THE 3505 02:12:58,605 --> 02:13:01,208 TRIALS ARE INCONCLUSIVE OR THEY 3506 02:13:01,208 --> 02:13:04,711 HAVE INVALID RESULTS BECAUSE 3507 02:13:04,711 --> 02:13:08,849 THEY HAVE REDUCED STATISTICAL 3508 02:13:08,849 --> 02:13:11,485 POWER AND WE TEND TO THINK OF 3509 02:13:11,485 --> 02:13:12,819 TYPE 1 ERRORS AS MAKING SURE WE 3510 02:13:12,819 --> 02:13:14,454 MEET OUR P VALUES BUT THE LIKELY 3511 02:13:14,454 --> 02:13:15,889 HOOS OF SAYING SOMETHING IS NOT 3512 02:13:15,889 --> 02:13:16,823 SIGNIFICANT AND BENEFICIAL WHEN, 3513 02:13:16,823 --> 02:13:21,228 IN FACT, IT MIGHT BE IS REALLY A 3514 02:13:21,228 --> 02:13:22,095 PROBLEM. 3515 02:13:22,095 --> 02:13:24,064 THE PROTRACTED ACCRUAL, YOU GET 3516 02:13:24,064 --> 02:13:25,165 TRIAL FATIGUE SO THAT THE 3517 02:13:25,165 --> 02:13:26,166 INDIVIDUALS INVOLVED HAVE 3518 02:13:26,166 --> 02:13:28,435 DIMINISHED COMMITMENT, YOU FIND 3519 02:13:28,435 --> 02:13:29,769 HIGHER LOSS TO FOLLOW-UP. 3520 02:13:29,769 --> 02:13:31,838 THERE'S LOSS OF MOTIVATION FOR 3521 02:13:31,838 --> 02:13:33,039 EVERYBODY WHO'S INVOLVED IN THE 3522 02:13:33,039 --> 02:13:35,675 TRIAL AND OFTEN TREMENDOUS STAFF 3523 02:13:35,675 --> 02:13:36,209 TURNOVER. 3524 02:13:36,209 --> 02:13:37,644 AND WHAT HAPPENS IS THAT THE 3525 02:13:37,644 --> 02:13:38,612 PEOPLE WHO ARE WORKING THE 3526 02:13:38,612 --> 02:13:40,147 HARDEST, I THINK THE HARDEST JOB 3527 02:13:40,147 --> 02:13:43,083 FOR THOSE OF US WHO WORK IN 3528 02:13:43,083 --> 02:13:46,486 INSTITUTIONAL-BASED RESEARCH ARE 3529 02:13:46,486 --> 02:13:47,787 THOSE YOUNG PEOPLE THAT WE HIRE 3530 02:13:47,787 --> 02:13:51,825 RIGHT OUT OF COLLEGE TO BE THE 3531 02:13:51,825 --> 02:13:52,926 RESEARCH COORDINATORS, THEY'RE 3532 02:13:52,926 --> 02:13:54,461 RESPONSIBLE FOR RECRUITMENT. 3533 02:13:54,461 --> 02:13:56,096 IT'S PROBABLY THE MOST STRESSFUL 3534 02:13:56,096 --> 02:13:56,663 JOB OF ALL BECAUSE THEY'RE 3535 02:13:56,663 --> 02:13:58,398 TRYING TO PERSUADE PEOPLE TO DO 3536 02:13:58,398 --> 02:13:59,833 SOMETHING THAT THEY DON'T 3537 02:13:59,833 --> 02:14:01,234 NECESSARILY WANT OR FEEL THAT 3538 02:14:01,234 --> 02:14:04,204 THEY DON'T NEED TO DO. 3539 02:14:04,204 --> 02:14:06,606 THERE ARE ALSO SERIOUS ETHICAL 3540 02:14:06,606 --> 02:14:08,041 CONCERNS REGARDING EXPOSURE OF 3541 02:14:08,041 --> 02:14:09,042 CONSENTED PARTICIPANTS TO STUDY 3542 02:14:09,042 --> 02:14:10,911 RISK WITH NO CORRESPONDING 3543 02:14:10,911 --> 02:14:12,546 BENEFIT IF THE HYPOTHESES ARE 3544 02:14:12,546 --> 02:14:13,313 NOT TESTABLE. 3545 02:14:13,313 --> 02:14:14,414 THE OVERALL OUT COME IS A LACK 3546 02:14:14,414 --> 02:14:15,949 OF GENERAL RISIBLE RESULTS THAT 3547 02:14:15,949 --> 02:14:19,119 THEN FURTHER PERPETUATE 3548 02:14:19,119 --> 02:14:20,220 DISPARITIES SO THOSE OF US 3549 02:14:20,220 --> 02:14:21,321 REALLY LOOKING AT RECRUITMENT 3550 02:14:21,321 --> 02:14:22,389 AND RECRUITMENT STRATEGIES ARE 3551 02:14:22,389 --> 02:14:23,623 VERY, VERY CONCERNED ABOUT THIS. 3552 02:14:23,623 --> 02:14:28,061 I WANT TO DRAW YOUR ATTENTION TO 3553 02:14:28,061 --> 02:14:29,062 THE RIGHT SIDE OF THIS SLIDE. 3554 02:14:29,062 --> 02:14:31,131 THIS IS JUST AN EXCELLENT 3555 02:14:31,131 --> 02:14:33,099 ARTICLE BY MY COLLEAGUE CONSUELA 3556 02:14:33,099 --> 02:14:34,668 WILKINS WHO'S AT VANDERBILT 3557 02:14:34,668 --> 02:14:35,068 UNIVERSITY. 3558 02:14:35,068 --> 02:14:38,905 SHE ALSO LEADS THE VANDERBILT 3559 02:14:38,905 --> 02:14:40,340 MEHARRY ALLIANCE THERE, AND WHAT 3560 02:14:40,340 --> 02:14:42,409 CONSUELA HAS WRITTEN ABOUT FOR A 3561 02:14:42,409 --> 02:14:46,112 LONG TIME NOW IS THAT SHE ADDS 3562 02:14:46,112 --> 02:14:47,781 THAT PIECE TO THE LITERATURE ON 3563 02:14:47,781 --> 02:14:48,181 TRUST. 3564 02:14:48,181 --> 02:14:51,051 SO WE ALL KNOW OR BELIEVE THAT 3565 02:14:51,051 --> 02:14:53,019 TRUST IN INSTITUTIONS OR TRUST 3566 02:14:53,019 --> 02:14:55,922 IN INVESTIGATORS IS A PRIME 3567 02:14:55,922 --> 02:14:56,923 DETERMINANT OF RESEARCH 3568 02:14:56,923 --> 02:14:57,958 PARTICIPATION, BUT THERE'S VERY 3569 02:14:57,958 --> 02:14:59,125 LITTLE ATTENTION TO WHAT 3570 02:14:59,125 --> 02:15:03,597 ACTUALLY MAKES US TRUSTWORTHY, 3571 02:15:03,597 --> 02:15:04,664 AND THE TRUSTWORTHINESS IS THE 3572 02:15:04,664 --> 02:15:06,700 PART THAT I THINK IS THE MISSING 3573 02:15:06,700 --> 02:15:08,668 ELEMENT IN A LOT OF STUDY 3574 02:15:08,668 --> 02:15:10,337 DESIGNS FROM THE 3575 02:15:10,337 --> 02:15:11,938 CONCEPTUALIZATION TO THE 3576 02:15:11,938 --> 02:15:12,706 EXECUTION. 3577 02:15:12,706 --> 02:15:14,007 SO TRUSTWORTHY RESEARCHERS ARE 3578 02:15:14,007 --> 02:15:15,242 EASILY REACHED. 3579 02:15:15,242 --> 02:15:16,910 THEY'RE NOT, YOU KNOW, PROTECTED 3580 02:15:16,910 --> 02:15:19,045 BY THEIR RESEARCH STAFF. 3581 02:15:19,045 --> 02:15:20,247 PEOPLE IN THE COMMUNITY WANT TO 3582 02:15:20,247 --> 02:15:21,581 SEE THE INVESTIGATORS, THEY WANT 3583 02:15:21,581 --> 02:15:23,450 TO BE ABLE TO ASK THE 3584 02:15:23,450 --> 02:15:23,984 INVESTIGATOR QUESTIONS. 3585 02:15:23,984 --> 02:15:25,752 AND THAT'S FAIR. 3586 02:15:25,752 --> 02:15:27,487 WE NEED TO BE APPROACHABLE, YOU 3587 02:15:27,487 --> 02:15:28,822 KNOW, THERE ARE NO BAD QUESTIONS 3588 02:15:28,822 --> 02:15:30,890 WHEN IT COMES TO RESEARCH 3589 02:15:30,890 --> 02:15:32,425 DESIGNS, RESEARCH QUESTIONS S 3590 02:15:32,425 --> 02:15:33,827 RESEARCH PARTICIPATION. 3591 02:15:33,827 --> 02:15:35,695 WE NEED TO BE GOOD LISTENERS. 3592 02:15:35,695 --> 02:15:38,098 YOU KNOW, THE FIRST RULE OF 3593 02:15:38,098 --> 02:15:38,698 COMMUNITY ENGAGEMENT IS FIRST 3594 02:15:38,698 --> 02:15:40,734 YOU SHOW UP AND YOU ASK 3595 02:15:40,734 --> 02:15:42,469 PERMISSION TO SPEAK. 3596 02:15:42,469 --> 02:15:43,903 YOU DON'T TAKE -- YOU DON'T 3597 02:15:43,903 --> 02:15:45,472 ASSUME THAT THE COMMUNITY THAT 3598 02:15:45,472 --> 02:15:48,275 YOU'RE TALKING TO KNOWS LESS 3599 02:15:48,275 --> 02:15:49,376 ABOUT THE TOPIC THAN YOU DO, 3600 02:15:49,376 --> 02:15:50,443 WHICH IS OFTEN INCORRECT. 3601 02:15:50,443 --> 02:15:51,578 YOU HAVE TO BE ABLE TO 3602 02:15:51,578 --> 02:15:54,080 UNDERSTAND THE PERSPECTIVES OF 3603 02:15:54,080 --> 02:15:54,414 OTHERS. 3604 02:15:54,414 --> 02:15:55,949 SO WHEN SOMEBODY TELLS ME, YOU 3605 02:15:55,949 --> 02:15:57,350 KNOW, DR. EDWARDS, I REALLY LIKE 3606 02:15:57,350 --> 02:15:59,319 YOU BUT I WOULD NEVER DO YOUR 3607 02:15:59,319 --> 02:16:00,987 STUDY, YOU HAVE TO SAY, WELL, 3608 02:16:00,987 --> 02:16:02,522 HELP ME UNDERSTAND WHY. 3609 02:16:02,522 --> 02:16:03,790 I REALLY NEED TO UNDERSTAND 3610 02:16:03,790 --> 02:16:03,990 THIS. 3611 02:16:03,990 --> 02:16:06,226 I REALLY APPRECIATE YOU TAKING 3612 02:16:06,226 --> 02:16:06,793 THE TIME TO TELL ME. 3613 02:16:06,793 --> 02:16:08,862 YOU HAVE TO BE HONEST, TRUTHFUL 3614 02:16:08,862 --> 02:16:10,163 AND. 3615 02:16:10,163 --> 02:16:10,597 OPEN. 3616 02:16:10,597 --> 02:16:12,265 YOU HAVE TO BE WILLING TO SAY I 3617 02:16:12,265 --> 02:16:13,700 KNOW MY INSTITUTION IS A 3618 02:16:13,700 --> 02:16:15,001 COLOSSAL PAIN IN THE ASS, I KNOW 3619 02:16:15,001 --> 02:16:16,336 IT'S GOING TO TAKE TOO LONG TO 3620 02:16:16,336 --> 02:16:19,172 GET YOU PAID, I KNOW THAT 3621 02:16:19,172 --> 02:16:20,607 SOMETIMES WE MAKE ASSUMPTIONS 3622 02:16:20,607 --> 02:16:22,342 ABOUT YOUR CAPACITY TO DO THINGS 3623 02:16:22,342 --> 02:16:23,443 IN THE WAY THAT WE NEED TO DO 3624 02:16:23,443 --> 02:16:25,178 THEM AND WE TELL YOU THAT WE 3625 02:16:25,178 --> 02:16:26,713 NEED TO DO THEM THIS WAY BECAUSE 3626 02:16:26,713 --> 02:16:28,114 WE'RE AN ARM OF THE STATE OF 3627 02:16:28,114 --> 02:16:29,449 WISCONSIN AS OPPOSED TO I JUST 3628 02:16:29,449 --> 02:16:31,651 DON'T HAVE TIME TO TAKE ON THIS 3629 02:16:31,651 --> 02:16:33,453 ADMINISTRATIVE BURDEN MYSELF. 3630 02:16:33,453 --> 02:16:34,387 YOU HAVE TO BE WILLING TO 3631 02:16:34,387 --> 02:16:35,588 CHALLENGE AND CHANGE 3632 02:16:35,588 --> 02:16:36,589 INSTITUTIONAL PRACTICES, IN 3633 02:16:36,589 --> 02:16:41,494 OTHER WORDS, TELL ME WHY I CAN'T 3634 02:16:41,494 --> 02:16:42,095 REIMBURSE MY PARTICIPANTS IN 3635 02:16:42,095 --> 02:16:43,363 CASH IF THEY ASK ME TO. 3636 02:16:43,363 --> 02:16:44,130 WHY? 3637 02:16:44,130 --> 02:16:47,967 TELL ME WHY YOU WANT A SOCIAL 3638 02:16:47,967 --> 02:16:49,836 SECURITY NUMBER FOR A $20 3639 02:16:49,836 --> 02:16:50,270 REIMBURSEMENT. 3640 02:16:50,270 --> 02:16:51,905 IT ILLEGAL. 3641 02:16:51,905 --> 02:16:52,906 FIRST OF ALL. 3642 02:16:52,906 --> 02:16:54,441 PEOPLE DON'T NEED TO GIVE US 3643 02:16:54,441 --> 02:16:55,408 THEIR SOCIAL SECURITY NUMBERS 3644 02:16:55,408 --> 02:16:56,910 AND SOMEDAY I'LL TELL YOU ABOUT 3645 02:16:56,910 --> 02:16:58,211 HOW I MAKE THEM UP SOMETIMES BUT 3646 02:16:58,211 --> 02:16:59,746 THAT'S ANOTHER DAY'S STORY. 3647 02:16:59,746 --> 02:17:01,514 YOU HAVE TO VALUE OTHERS AND BE 3648 02:17:01,514 --> 02:17:03,149 HUHUMBLE. 3649 02:17:03,149 --> 02:17:04,851 AND YOU HAVE TO REALLY BE 3650 02:17:04,851 --> 02:17:05,618 RESPECTFUL. 3651 02:17:05,618 --> 02:17:07,153 THIS IS A -- THESE KINDS OF 3652 02:17:07,153 --> 02:17:08,555 PROJECTS HAVE TO BE 3653 02:17:08,555 --> 02:17:09,222 COLLABORATIVE. 3654 02:17:09,222 --> 02:17:10,724 IF THEY'RE UNIDIRECTIONAL, 3655 02:17:10,724 --> 02:17:12,192 THEY'RE NOT GOING TO WORK. 3656 02:17:12,192 --> 02:17:17,797 SO I REALLY GO BACK TO 3657 02:17:17,797 --> 02:17:18,765 CONSUELO'S PAPER ALL THE TIME TO 3658 02:17:18,765 --> 02:17:20,667 MAKE SURE THAT OUR RESEARCH 3659 02:17:20,667 --> 02:17:22,302 TEAMS, THE ONES THAT I'M WORKING 3660 02:17:22,302 --> 02:17:25,805 ON AND ADVISING, REALLY THINK 3661 02:17:25,805 --> 02:17:27,240 ABOUT HOW TO BE MORE TRUSTWORTHY 3662 02:17:27,240 --> 02:17:30,744 AND ALSO PUSHING MY INSTITUTION 3663 02:17:30,744 --> 02:17:32,178 AND OTHER INSTITUTIONS TO BE 3664 02:17:32,178 --> 02:17:33,413 MORE TRUSTWORTHY BY REALLY 3665 02:17:33,413 --> 02:17:35,348 LOOKING CLOSELY AT INSTITUTIONAL 3666 02:17:35,348 --> 02:17:38,084 POLICIES AND PRACTICES THAT 3667 02:17:38,084 --> 02:17:38,685 DISADVANTAGE COMMUNITY GROUPS, 3668 02:17:38,685 --> 02:17:39,886 WHO VERY MUCH WANT TO 3669 02:17:39,886 --> 02:17:41,488 COLLABORATE WITH US BUT CAN'T 3670 02:17:41,488 --> 02:17:45,024 FIGURE OUT HOW TO DO IT. 3671 02:17:45,024 --> 02:17:48,962 SO THIS IS A PAPER THAT WAS JUST 3672 02:17:48,962 --> 02:17:54,267 PUBLISHED IN NOVEMBER AND IT IS 3673 02:17:54,267 --> 02:17:59,172 IN ARIZONA DIIN ALZHEIMER'S DISD 3674 02:17:59,172 --> 02:18:00,807 DEMENTIA AND IT IS ADDRESSING 3675 02:18:00,807 --> 02:18:02,342 THE PUBLIC AND PARTICIPANT 3676 02:18:02,342 --> 02:18:06,646 INVESTMENT IN I INCLUSIVE DEMENA 3677 02:18:06,646 --> 02:18:07,514 RESEARCH. 3678 02:18:07,514 --> 02:18:08,615 SO AS A DEMENTIA RESEARCHER I 3679 02:18:08,615 --> 02:18:09,616 LEAD THE OUTREACH AND 3680 02:18:09,616 --> 02:18:10,683 RECRUITMENT AND ENGAGEMENT CORE 3681 02:18:10,683 --> 02:18:12,552 FOR THE WISCONSIN ALZHEIMER'S 3682 02:18:12,552 --> 02:18:16,389 DISEASE RESEARCH CENTER. 3683 02:18:16,389 --> 02:18:17,490 THERE ARE GREAT CONCERNS THAT 3684 02:18:17,490 --> 02:18:19,159 OUR RESEARCH, OUR FINDINGS ARE 3685 02:18:19,159 --> 02:18:20,493 NOT GENERALIZABLE. 3686 02:18:20,493 --> 02:18:22,028 SO NIA HAS REALLY PUSHED 3687 02:18:22,028 --> 02:18:24,531 RESEARCH CENTERS TO CONSIDER THE 3688 02:18:24,531 --> 02:18:26,166 ROLES OF PARTICIPANT AND THE 3689 02:18:26,166 --> 02:18:27,801 PUBLIC AND HOW WE DO WHAT WE DO. 3690 02:18:27,801 --> 02:18:28,802 STARTING VERY EARLY IN THE 3691 02:18:28,802 --> 02:18:30,236 IDENTIFYING AND PRIORITIZING 3692 02:18:30,236 --> 02:18:32,205 RESEARCH AIMS, IN OTHER WORDS, 3693 02:18:32,205 --> 02:18:33,640 MY RESEARCH AIM MAY NOT BE THE 3694 02:18:33,640 --> 02:18:34,841 AIM OF THE COMMUNITY, IT MAY NOT 3695 02:18:34,841 --> 02:18:36,543 BE WHAT'S PERCEIVED TO BE MOST 3696 02:18:36,543 --> 02:18:39,679 IMPORTANT, SO BURDEN OF CARE MAY 3697 02:18:39,679 --> 02:18:43,716 IN FACT BE MORE IMPORTANT TO THE 3698 02:18:43,716 --> 02:18:45,318 INDIVIDUALS WITH MILD COGNITIVE 3699 02:18:45,318 --> 02:18:47,287 IMPAIRMENT OR DEMENTIA, AND I'M 3700 02:18:47,287 --> 02:18:52,559 INTERESTED IN, YOU KNOW, SOME 3701 02:18:52,559 --> 02:18:53,860 OTHER COGNITIVE VARIABLE WHICH 3702 02:18:53,860 --> 02:18:55,428 SEEMS TO BE COMPLETELY 3703 02:18:55,428 --> 02:18:56,196 DISCONNECTED FROM THEIR DAY TO 3704 02:18:56,196 --> 02:18:57,597 DAY LIVED EXPERIENCE. 3705 02:18:57,597 --> 02:18:58,698 THE SECOND ROLE IS DESIGNING 3706 02:18:58,698 --> 02:18:59,866 RESEARCH AND PROPOSALS AND 3707 02:18:59,866 --> 02:19:02,902 METHODS THAT ACTUALLY REFLECT 3708 02:19:02,902 --> 02:19:05,205 THE NEEDS AND INTERESTS OF THE 3709 02:19:05,205 --> 02:19:06,239 PARTICIPANTS INVOLVED. 3710 02:19:06,239 --> 02:19:07,674 IN OTHER WORDS, IN OUR CENTER, 3711 02:19:07,674 --> 02:19:14,214 WE ASK PEOPLE, 794 OF OUR 3712 02:19:14,214 --> 02:19:15,448 PARTICIPANTS, TO DO SERIAL 3713 02:19:15,448 --> 02:19:16,382 LUMBAR PUNCTURES. 3714 02:19:16,382 --> 02:19:17,817 NOW THAT'S A HARD ASK BUT PEOPLE 3715 02:19:17,817 --> 02:19:20,453 DO THEM BECAUSE, IN FACT, OUR 3716 02:19:20,453 --> 02:19:22,589 CENTER IS ALSO VERY ENGAGED IN 3717 02:19:22,589 --> 02:19:23,556 CAREGIVING RESEARCH AND 3718 02:19:23,556 --> 02:19:25,425 CAREGIVER EDUCATION AND 3719 02:19:25,425 --> 02:19:26,292 PROFESSIONAL EDUCATION IN 3720 02:19:26,292 --> 02:19:27,727 PROVIDING SERVICES AND RESOURCES 3721 02:19:27,727 --> 02:19:29,696 TO OUR STUDY PARTICIPANTS AND 3722 02:19:29,696 --> 02:19:30,263 THEIR FAMILIES. 3723 02:19:30,263 --> 02:19:34,701 IN OTHER WORDS, WE GET TO DO THE 3724 02:19:34,701 --> 02:19:40,039 SCIENCE WE FEEL WE NEED TO DO 3725 02:19:40,039 --> 02:19:41,241 PAUSE WE'RE ACTUALLY ENGAGING IN 3726 02:19:41,241 --> 02:19:43,142 A COLLABORATIVE EFFORT OF 3727 02:19:43,142 --> 02:19:43,776 ADDRESSING ALZHEIMER'S DISEASE 3728 02:19:43,776 --> 02:19:45,111 IN MANY FORMS WITH THE PEOPLE 3729 02:19:45,111 --> 02:19:46,312 WHO ARE SUPPORTING OUR WORK. 3730 02:19:46,312 --> 02:19:47,714 WE COULD NOT COULD IT WITHOUT 3731 02:19:47,714 --> 02:19:47,914 THEM. 3732 02:19:47,914 --> 02:19:49,716 WE ARE REALLY CAREFUL ABOUT 3733 02:19:49,716 --> 02:19:51,351 GETTING PARTICIPANT INPUT INTO 3734 02:19:51,351 --> 02:19:52,252 OUR RESEARCH CONDUCT AND 3735 02:19:52,252 --> 02:19:52,685 MANAGEMENT. 3736 02:19:52,685 --> 02:19:53,786 I HAVE A PARTICIPANT ADVISORY 3737 02:19:53,786 --> 02:19:56,756 BOARD WHO TELLS ME IF THE VISITS 3738 02:19:56,756 --> 02:19:58,758 GO WRONG, HOW BAD THE PARKING 3739 02:19:58,758 --> 02:20:00,293 IS, WHY WE DON'T GET -- WHY 3740 02:20:00,293 --> 02:20:01,928 HAVEN'T WE PROVIDED MONEY FOR 3741 02:20:01,928 --> 02:20:03,696 LUNCH, HOW COME WE HAVE TO COME 3742 02:20:03,696 --> 02:20:07,433 IN THREE TIMES FOR -- WHY 3743 02:20:07,433 --> 02:20:08,735 COULDN'T WE SCHEDULE A SINGLE 3744 02:20:08,735 --> 02:20:09,836 LONGER DAY IF THAT'S OUR 3745 02:20:09,836 --> 02:20:11,971 PREFERENCE, WHY ARE WE ALWAYS 3746 02:20:11,971 --> 02:20:15,174 WORKING ON OUR YOUR SCHEDULE, 3747 02:20:15,174 --> 02:20:16,676 NOT HOURS, WHY CAN'T WE COME IN 3748 02:20:16,676 --> 02:20:18,578 ON A SATURDAY MORNING FOR A 3749 02:20:18,578 --> 02:20:19,145 BLOOD DRAW? 3750 02:20:19,145 --> 02:20:20,346 ALL THESE THINGS AND OUR CENTER 3751 02:20:20,346 --> 02:20:21,748 HAS CHANGED IN RESPONSE TO THAT. 3752 02:20:21,748 --> 02:20:23,750 WE BRING PARTICIPANTS IN TO HEAR 3753 02:20:23,750 --> 02:20:25,952 PRELIMINARY RESEARCH ANALYSES, 3754 02:20:25,952 --> 02:20:27,453 OUR PRELIMINARY FINDINGS TO SEE 3755 02:20:27,453 --> 02:20:29,122 IF THEY MAKE SENSE AND IF WE'RE 3756 02:20:29,122 --> 02:20:29,989 BEING CLEAR, AND WE ENGAGE THEM 3757 02:20:29,989 --> 02:20:30,990 IN THE TI SEMI NATION OF 3758 02:20:30,990 --> 02:20:32,191 FINDINGS AND THEN WE START THE 3759 02:20:32,191 --> 02:20:34,460 PROCESS ALL OVER AGAIN. 3760 02:20:34,460 --> 02:20:35,862 I THINK THIS IS A GUIDE THAT'S 3761 02:20:35,862 --> 02:20:37,397 UNIVERSAL, I DON'T THINK IT'S 3762 02:20:37,397 --> 02:20:37,997 SPECIFIC TO ALZHEIMER'S 3763 02:20:37,997 --> 02:20:38,264 RESEARCH. 3764 02:20:38,264 --> 02:20:39,732 I THINK IT SPEAKS TO MANY, MANY 3765 02:20:39,732 --> 02:20:40,934 KIENTDZ OF RESEARCH AND THIS IS 3766 02:20:40,934 --> 02:20:41,568 THE PROCESS. 3767 02:20:41,568 --> 02:20:43,369 BUT WHAT THIS IMPLIES IS THAT 3768 02:20:43,369 --> 02:20:44,337 THIS IS A LONG-TERM 3769 02:20:44,337 --> 02:20:44,871 RELATIONSHIP. 3770 02:20:44,871 --> 02:20:46,406 WE'RE NOT IN IT FOR THE ONE AND 3771 02:20:46,406 --> 02:20:46,639 DONE. 3772 02:20:46,639 --> 02:20:49,609 YOU KNOW, OUR CENTER HAS BEEN 3773 02:20:49,609 --> 02:20:50,710 FUNDED, WE'RE FORTUNATE TO BE IN 3774 02:20:50,710 --> 02:20:52,011 OUR 15TH YEAR OF FUNDING. 3775 02:20:52,011 --> 02:20:54,180 WE JUST GOT RENEWED SO WE'RE 3776 02:20:54,180 --> 02:20:55,882 GOING TO BE GOING FOR 20 YEARS. 3777 02:20:55,882 --> 02:20:57,817 WE HAVE 20 YEARS OF ENGAGEMENT 3778 02:20:57,817 --> 02:20:59,352 TO ACCOUNT FOR. 3779 02:20:59,352 --> 02:21:04,424 WHICH MAKES OUR CENTER GENERALLY 3780 02:21:04,424 --> 02:21:05,024 SUCCESSFUL. 3781 02:21:05,024 --> 02:21:06,059 BUT THE IDEA IF WE COULD GO OUT 3782 02:21:06,059 --> 02:21:07,026 TO THE COMMUNITY ONCE A YEAR 3783 02:21:07,026 --> 02:21:08,928 WITH A LECTURE AND TELL PEOPLE 3784 02:21:08,928 --> 02:21:09,996 WHAT THEY NEED TO KNOW ABOUT 3785 02:21:09,996 --> 02:21:10,663 ALZHEIMER'S DISEASE, WE WOULDN'T 3786 02:21:10,663 --> 02:21:12,098 BE ABLE TO RECRUIT FOR THESE 3787 02:21:12,098 --> 02:21:14,200 HEAVY LIFTS THAT WE ASK OUR 3788 02:21:14,200 --> 02:21:15,301 PARTICIPANTS TO DO. 3789 02:21:15,301 --> 02:21:20,206 AND WE WOULDN'T BE VERY 3790 02:21:20,206 --> 02:21:20,540 SUCCESSFUL. 3791 02:21:20,540 --> 02:21:21,874 SO I'M GOING TO TELL YOU A 3792 02:21:21,874 --> 02:21:23,109 LITTLE BIT ABOUT A PROGRAM THAT 3793 02:21:23,109 --> 02:21:24,944 WE HAVE HERE SWITCHING GEARS A 3794 02:21:24,944 --> 02:21:25,812 BIT. 3795 02:21:25,812 --> 02:21:29,048 SO I'M PART OF NIA R33 CALLED 3796 02:21:29,048 --> 02:21:31,551 THE COMMUNITY ACADEMIC AGING 3797 02:21:31,551 --> 02:21:35,388 RESEARCH NETWORK, AND IT IS A 3798 02:21:35,388 --> 02:21:37,290 PROGRAM THAT COVERS THE STATE OF 3799 02:21:37,290 --> 02:21:38,791 WISCONSIN INCLUDING THE 3800 02:21:38,791 --> 02:21:40,226 WISCONSIN INSTITUTE FOR HEALTHY 3801 02:21:40,226 --> 02:21:41,194 AGING, THE AFRICAN AMERICAN 3802 02:21:41,194 --> 02:21:43,196 HEALTHCARE NETWORK, UNITE 3803 02:21:43,196 --> 02:21:45,064 WISCONSIN IS IN MILWAUKEE, AND 3804 02:21:45,064 --> 02:21:46,366 THE CENTER FOR COMMUNITY 3805 02:21:46,366 --> 02:21:47,900 ENGAGEMENT & HEALTH PARTNERSHIP 3806 02:21:47,900 --> 02:21:49,769 IS IN MILWAUKEE AND IT WAS 3807 02:21:49,769 --> 02:21:51,771 FUNDED BY NIA TO BRING THE 3808 02:21:51,771 --> 02:21:53,306 VOICES OF OLDER ADULTS, 3809 02:21:53,306 --> 02:21:54,240 PARTICULARLY RURAL AND AFRICAN 3810 02:21:54,240 --> 02:21:56,809 AMERICAN OLDER ADULTS, INTO 3811 02:21:56,809 --> 02:22:02,048 RESEARCH DESIGN AND EXECUTION. 3812 02:22:02,048 --> 02:22:05,184 SO DURING THE FIRST FUNDING 3813 02:22:05,184 --> 02:22:07,153 CYCLE, CARN PARTNERED WITH AGING 3814 02:22:07,153 --> 02:22:08,888 NETWORK SERVICE PROVIDERS AND 3815 02:22:08,888 --> 02:22:09,455 ADVOCACY GROUPS. 3816 02:22:09,455 --> 02:22:11,190 WE TRAINED RESEARCH LIAISONS 3817 02:22:11,190 --> 02:22:13,059 FROM PARTNERING ORGANIZATIONS 3818 02:22:13,059 --> 02:22:16,763 REPRESENTING THEIR HEALTHCARE 3819 02:22:16,763 --> 02:22:17,764 SYSTEMS AND AFRICAN AMERICAN 3820 02:22:17,764 --> 02:22:18,097 STAKEHOLDERS. 3821 02:22:18,097 --> 02:22:20,266 WE PROVIDED MULTIDISCIPLINARY 3822 02:22:20,266 --> 02:22:20,967 EXPERTS TO CONSULT DURING THE 3823 02:22:20,967 --> 02:22:22,935 DESIGN PHASE OF INTERVENTIONS 3824 02:22:22,935 --> 02:22:24,504 TRYINGS TO ACTUALLY GET THE 3825 02:22:24,504 --> 02:22:25,405 COMMUNITY ENGAGEMENT PIECE EARLY 3826 02:22:25,405 --> 02:22:26,539 ON BEFORE THE RESEARCH WAS 3827 02:22:26,539 --> 02:22:28,975 DESIGNED OR FUNDED. 3828 02:22:28,975 --> 02:22:31,611 WE SUPPORTED -- AND SUPPORT 3829 02:22:31,611 --> 02:22:32,512 COMMUNITY ADVISORY BOARDS TO 3830 02:22:32,512 --> 02:22:33,479 PROVIDE INPUT THROUGH ALL STAGES 3831 02:22:33,479 --> 02:22:35,815 AND WE CREATED TAILORED ADVISORY 3832 02:22:35,815 --> 02:22:36,749 BOARDS WITH VERY SPECIFIC 3833 02:22:36,749 --> 02:22:38,551 SUBJECT MATTER EXPERTISE THAT 3834 02:22:38,551 --> 02:22:40,319 ALWAYS INCLUDES REPRESENTATIVES 3835 02:22:40,319 --> 02:22:42,255 FROM COMMUNITY ORGANIZES AND 3836 02:22:42,255 --> 02:22:45,258 COMMUNITIES OF INTEREST. 3837 02:22:45,258 --> 02:22:47,226 SO THIS WAS VERY SUCCESSFUL. 3838 02:22:47,226 --> 02:22:49,062 WE FINISHED FIVE YEARS OF 3839 02:22:49,062 --> 02:22:50,596 FUNDING AND THIS IS JUST A LIST, 3840 02:22:50,596 --> 02:22:51,931 YOU CAN LOOK AT THIS LATER. 3841 02:22:51,931 --> 02:22:54,133 BUT IT GOES ALL THE WAY FROM 3842 02:22:54,133 --> 02:22:55,101 EVALUATING COLLABORATION WITH 3843 02:22:55,101 --> 02:22:56,235 COMMUNITY HEALTH WORKERS FOR 3844 02:22:56,235 --> 02:22:58,971 CANCER SCREENING, WORKING WITH 3845 02:22:58,971 --> 02:23:00,173 AHEC, WHO TRAINS COMMUNITY 3846 02:23:00,173 --> 02:23:01,074 HEALTH WORKERS. 3847 02:23:01,074 --> 02:23:02,809 I HAVE A LONG COVID STUDY THAT 3848 02:23:02,809 --> 02:23:05,311 I'LL TELL YOU A LITTLE BIT MORE 3849 02:23:05,311 --> 02:23:06,879 FOR RECRUITMENT OF BLACK OLDER 3850 02:23:06,879 --> 02:23:08,214 ADULTS TO ALZHEIMER'S DISEASE 3851 02:23:08,214 --> 02:23:09,615 INTERVENTION STUDIES. 3852 02:23:09,615 --> 02:23:12,652 I'LL REMIND YOU THAT IN THE VERY 3853 02:23:12,652 --> 02:23:15,455 FIRST FDA-APPROVED DRUG THAT WAS 3854 02:23:15,455 --> 02:23:16,556 IN TRIAL FOR ALZHEIMER'S 3855 02:23:16,556 --> 02:23:20,626 DISEASE, THERE WERE 10, I MEAN 3856 02:23:20,626 --> 02:23:21,160 10, AFRICAN AMERICAN 3857 02:23:21,160 --> 02:23:24,230 PARTICIPANTS. 3858 02:23:24,230 --> 02:23:26,099 NOW THAT'S EMBARRASSING. 3859 02:23:26,099 --> 02:23:29,902 SO THERE'S A TREMENDOUS NEED FOR 3860 02:23:29,902 --> 02:23:31,137 INDIVIDUALS DOING INTERVENTION 3861 02:23:31,137 --> 02:23:32,472 TRIALS TO BE MORE INCLUSIVE, SO 3862 02:23:32,472 --> 02:23:33,840 THE RESULTS ACTUALLY MIGHT BE 3863 02:23:33,840 --> 02:23:36,109 ABLE TO BENEFIT INDIVIDUALS AND 3864 02:23:36,109 --> 02:23:38,511 COMMUNITIES. 3865 02:23:38,511 --> 02:23:39,912 WE WORKED ON MENTAL HEALTH 3866 02:23:39,912 --> 02:23:41,147 INTERVENTIONS IN BLACK AND RURAL 3867 02:23:41,147 --> 02:23:42,982 COMMUNITIES ANYWAY, SO A WIDE 3868 02:23:42,982 --> 02:23:46,085 VARIETY OF DIFFERENT KINDS OF 3869 02:23:46,085 --> 02:23:47,453 PROJECTS WERE ENTERED INTO AND 3870 02:23:47,453 --> 02:23:49,055 THE RETURN ON INVESTMENT FOR 3871 02:23:49,055 --> 02:23:50,957 THIS PARTICULAR R33 WAS REALLY 3872 02:23:50,957 --> 02:23:52,458 SUBSTANTIVE, BOTH IN INTRAMURAL 3873 02:23:52,458 --> 02:23:59,165 AND EXTRAMURAL FUNDING. 3874 02:23:59,165 --> 02:24:04,470 LY SAYI WILL SAY WE JUST GOT RE, 3875 02:24:04,470 --> 02:24:06,172 THE NEW R33 IS FOCUSED ON 3876 02:24:06,172 --> 02:24:07,740 INCLUSION OF OLDER ADULTS, 3877 02:24:07,740 --> 02:24:08,341 PARTICULARLY AFRICAN AMERICAN 3878 02:24:08,341 --> 02:24:10,676 AND RURAL OLDER ADULTS IN THE 3879 02:24:10,676 --> 02:24:12,345 DEVELOPMENT AND TESTING OF 3880 02:24:12,345 --> 02:24:13,112 ASSISTIVE DEVICES. 3881 02:24:13,112 --> 02:24:14,547 SO WE'VE BROUGHT IN THE SCHOOL 3882 02:24:14,547 --> 02:24:15,615 OF ENGINEERING AS A PARTNER, AND 3883 02:24:15,615 --> 02:24:17,483 I HAVE TO SAY THESE ENGINEERS 3884 02:24:17,483 --> 02:24:19,619 ARE REALLY A LITTLE BIT 3885 02:24:19,619 --> 02:24:21,154 OVERWHELMED BY THE IDEA OF 3886 02:24:21,154 --> 02:24:22,955 TAKING THEIR PRELIMINARY DEVICE 3887 02:24:22,955 --> 02:24:27,226 IDEAS INTO THE COMMUNITY AND 3888 02:24:27,226 --> 02:24:29,128 GETTING TOLD, "I WOULD NEVER USE 3889 02:24:29,128 --> 02:24:29,328 THAT." 3890 02:24:29,328 --> 02:24:30,329 ONE OF OUR JUNIOR INVESTIGATORS 3891 02:24:30,329 --> 02:24:32,298 ARE A DEVICE THAT HE WANTED TO 3892 02:24:32,298 --> 02:24:34,700 USE THAT MEASURED GAIT THAT 3893 02:24:34,700 --> 02:24:36,369 ATTACHED TO AN ANKLE, AND THE 3894 02:24:36,369 --> 02:24:37,436 VERY FIRST GROUP HE SPOKE TO 3895 02:24:37,436 --> 02:24:38,371 WERE OLDER AFRICAN AMERICAN 3896 02:24:38,371 --> 02:24:38,738 WOMEN. 3897 02:24:38,738 --> 02:24:40,106 THEY SAID WE'D NEVER USE THAT. 3898 02:24:40,106 --> 02:24:42,408 IT LOOKS LIKE A MONITORING 3899 02:24:42,408 --> 02:24:42,642 DEVICE. 3900 02:24:42,642 --> 02:24:44,610 AND NONE OF US HAVE EVER BEEN 3901 02:24:44,610 --> 02:24:45,211 INCARCERATED SO WHY WOULD YOU 3902 02:24:45,211 --> 02:24:48,981 WANT US TO LOOK LIKE WE WERE 3903 02:24:48,981 --> 02:24:50,082 UNDER JAIL SUPERVISION? 3904 02:24:50,082 --> 02:24:52,185 SO HE HAD TO TAKE IT BACK TO THE 3905 02:24:52,185 --> 02:24:52,718 DRAWING BOARD. 3906 02:24:52,718 --> 02:24:55,354 BUT THAT'S THE VALUE OF EARLY 3907 02:24:55,354 --> 02:24:56,455 COMMUNITY INVESTMENT. 3908 02:24:56,455 --> 02:24:58,758 SO I'M GOING TO TELL YOU BRIEFLY 3909 02:24:58,758 --> 02:24:59,959 ABOUT MY LONG COVID STUDY JUST 3910 02:24:59,959 --> 02:25:02,595 AS AN EXAMPLE OF WHAT OUR 3911 02:25:02,595 --> 02:25:03,696 COMMUNITY ENGAGEMENT HAS WORKED 3912 02:25:03,696 --> 02:25:05,398 ON. 3913 02:25:05,398 --> 02:25:07,600 SO I'M DOING A LONG COVID STUDY, 3914 02:25:07,600 --> 02:25:11,537 REALLY LOOKING AT BRAIN FOG OR 3915 02:25:11,537 --> 02:25:14,207 ACTUALLY REAL PROBLEMS, AND I'M 3916 02:25:14,207 --> 02:25:15,408 SPEAKING TO A KNOWLEDGEABLE 3917 02:25:15,408 --> 02:25:16,175 GROUP IN PARTICIPATION. 3918 02:25:16,175 --> 02:25:17,577 SO MOST OF THE COVID STUDIES 3919 02:25:17,577 --> 02:25:19,245 INCLUDING THE RECOVER STUDY AND 3920 02:25:19,245 --> 02:25:20,746 OTHER CDC STUDIES HAVE LOOKED AT 3921 02:25:20,746 --> 02:25:23,449 A LOT OF DIFFERENT ASPECTS OF 3922 02:25:23,449 --> 02:25:25,318 LONG COVID, IMMUNOLOGICAL, 3923 02:25:25,318 --> 02:25:26,319 CARDIOVASCULAR, BUT VERY FEW OF 3924 02:25:26,319 --> 02:25:28,654 THEM HAVE ACTUALLY ATTEMPTED TO 3925 02:25:28,654 --> 02:25:29,455 MEASURE WHAT'S REALLY IMPORTANT 3926 02:25:29,455 --> 02:25:31,057 TO PEOPLE WITH LONG COVID IS 3927 02:25:31,057 --> 02:25:32,925 THEIR INABILITY TO ENGAGE IN THE 3928 02:25:32,925 --> 02:25:34,560 LIFE ROLES AND RESPONSIBILITIES 3929 02:25:34,560 --> 02:25:37,663 THAT ARE IMPORTANT TO THEM. 3930 02:25:37,663 --> 02:25:38,764 AND THE MAIN CAUSE THEY SUGGEST 3931 02:25:38,764 --> 02:25:41,133 WHEN YOU TALK TO PEOPLE WITH 3932 02:25:41,133 --> 02:25:42,501 LONG COVID IS THAT THEY HAVE 3933 02:25:42,501 --> 02:25:42,768 BRAIN FOG. 3934 02:25:42,768 --> 02:25:43,603 THEY CALL IT BRAIN FOG. 3935 02:25:43,603 --> 02:25:45,471 AND IT CAUSES TREMENDOUS 3936 02:25:45,471 --> 02:25:47,240 DISABILITY IN DAILY ROUTINES AND 3937 02:25:47,240 --> 02:25:48,674 ACTIVITIES. 3938 02:25:48,674 --> 02:25:50,209 AND WE FOUND THROUGH RESEARCH 3939 02:25:50,209 --> 02:25:52,078 WITH A PH.D. STUDENT THAT 3940 02:25:52,078 --> 02:25:53,512 DISABILITY ISN'T WELL UNDERSTOOD 3941 02:25:53,512 --> 02:25:55,147 IN INDIVIDUALS WITH LONG COVID, 3942 02:25:55,147 --> 02:25:57,350 THAT THE CLINICIANS DON'T HAVE 3943 02:25:57,350 --> 02:25:59,318 ENOUGH EVIDENCE ON SAFE AND 3944 02:25:59,318 --> 02:26:01,988 EFFECTIVE REHABILITATION, VERY, 3945 02:26:01,988 --> 02:26:03,723 VERY FEW PEOPLE, EVEN THOSE 3946 02:26:03,723 --> 02:26:05,391 HOSPITALIZED WITH COVID EVER GET 3947 02:26:05,391 --> 02:26:06,692 REFERRED FOR REHABILITATION 3948 02:26:06,692 --> 02:26:07,927 SERVICES, AND THE DISABILITY 3949 02:26:07,927 --> 02:26:11,330 PERSISTS AND THE DISRUPTION OF 3950 02:26:11,330 --> 02:26:12,632 LIFE IS PERSISTING. 3951 02:26:12,632 --> 02:26:14,267 WHAT WE ALSO REALIZED IS THAT 3952 02:26:14,267 --> 02:26:15,835 EVEN IN THE BIG RECOVER TRIALS, 3953 02:26:15,835 --> 02:26:17,904 IN THE ORIGINAL RECOVER STUDY 3954 02:26:17,904 --> 02:26:20,006 FUNDED BY NIH, THERE WAS 3955 02:26:20,006 --> 02:26:21,440 ADEQUATE REPRESENTATION OF 3956 02:26:21,440 --> 02:26:21,974 AFRICAN AMERICANS IN THE 3957 02:26:21,974 --> 02:26:24,010 ORIGINAL STUDY OF HOSPITALIZED 3958 02:26:24,010 --> 02:26:26,178 PEOPLE, BUT WHEN YOU LOOK AT THE 3959 02:26:26,178 --> 02:26:27,980 RECOVER INTERVENTION TRIALS, THE 3960 02:26:27,980 --> 02:26:29,315 PARTICIPATION RATES OF 3961 02:26:29,315 --> 02:26:32,218 INDIVIDUALS WITH A PRE-EXISTING 3962 02:26:32,218 --> 02:26:33,219 DISABILITY OR INDIVIDUALS FROM 3963 02:26:33,219 --> 02:26:34,887 COMMUNITIES OF COLOR IS 3964 02:26:34,887 --> 02:26:35,554 NEGLIGIBLE. 3965 02:26:35,554 --> 02:26:37,123 AND SO AS PART OF OUR FUNDING, 3966 02:26:37,123 --> 02:26:38,524 WE COMMITTED TO RECRUITING A 3967 02:26:38,524 --> 02:26:41,294 SAMPLE OF AT LEAST 30% AFRICAN 3968 02:26:41,294 --> 02:26:44,430 AMERICAN. 3969 02:26:44,430 --> 02:26:46,198 SO I DID THIS WITH THE HELP OF 3970 02:26:46,198 --> 02:26:48,167 MY AWESOME COMMUNITY PARTNER WHO 3971 02:26:48,167 --> 02:26:52,271 CAME FROM CAARN, THAT'S ME ON 3972 02:26:52,271 --> 02:26:53,239 THE LEFT WANTING TO DO THE 3973 02:26:53,239 --> 02:26:54,106 RESEARCH. 3974 02:26:54,106 --> 02:26:57,310 MY COMMUNITY PARTNER IS 3975 02:26:57,310 --> 02:26:59,278 MS. PETERSON GAINES, SHE'S A 3976 02:26:59,278 --> 02:27:00,980 NURSE WHO WORKS AS A COMMUNITY 3977 02:27:00,980 --> 02:27:03,716 RESEARCH ASSOCIATE WITH CAARN, 3978 02:27:03,716 --> 02:27:05,685 AND SHE ALSO LEADS THE HEALTH 3979 02:27:05,685 --> 02:27:07,119 MINISTRY AT MOUNT ZION BAPTIST 3980 02:27:07,119 --> 02:27:10,489 CHURCH HERE IN MADISON, AND SHE 3981 02:27:10,489 --> 02:27:12,725 WAS MY EQUAL PARTNER IN THE 3982 02:27:12,725 --> 02:27:14,627 DESIGN AND IMPLEMENTATION OF THE 3983 02:27:14,627 --> 02:27:15,361 LONG COVID STUDY. 3984 02:27:15,361 --> 02:27:19,432 AND I JUST WANT TO GO OVER 3985 02:27:19,432 --> 02:27:27,106 BRIEFLY WHAT SHE DID FOR US. 3986 02:27:27,106 --> 02:27:29,342 SO I HAD FIVE OCCUPATIONAL 3987 02:27:29,342 --> 02:27:31,444 THERAPY STUDENTS AND FIVE 3988 02:27:31,444 --> 02:27:32,578 UNDERGRADUATE STUDENTS FROM OUR 3989 02:27:32,578 --> 02:27:35,081 UW PROGRAM ON HEALTH PROMOTION 3990 02:27:35,081 --> 02:27:36,182 HEALTH EQUITY WHO WERE MY 3991 02:27:36,182 --> 02:27:39,018 RESEARCH TEAM. 3992 02:27:39,018 --> 02:27:41,921 MS. PETERSON GAINES WORKED VERY 3993 02:27:41,921 --> 02:27:42,888 HARD WITH THEM TO PREPARE THEM 3994 02:27:42,888 --> 02:27:43,789 TO BE IN THE COMMUNITY WORKING 3995 02:27:43,789 --> 02:27:44,657 WITH INDIVIDUALS OF COLOR. 3996 02:27:44,657 --> 02:27:47,560 SHE COACHED THEM, SHE DID ROLE 3997 02:27:47,560 --> 02:27:54,734 PLAYING WITH THEM, R. 3998 02:27:54,734 --> 02:27:56,702 SHE TOOK OUR RECRUITMENT 3999 02:27:56,702 --> 02:27:58,537 MATERIALS TO HER FELLOW 4000 02:27:58,537 --> 02:27:59,705 PARISHIONERS AT MOUNT ZION 4001 02:27:59,705 --> 02:28:01,474 CHURCH, SHARED THEM, GOT 4002 02:28:01,474 --> 02:28:02,241 COMMENTS AND BROUGHT THEM BACK 4003 02:28:02,241 --> 02:28:03,909 TO US. 4004 02:28:03,909 --> 02:28:06,545 MYCO-INVESTIGATOR IS AN 4005 02:28:06,545 --> 02:28:07,980 INFECTIOUS DISEASE SPECIALIST. 4006 02:28:07,980 --> 02:28:10,316 WE DID A SERIES OF MOUNT ZION 4007 02:28:10,316 --> 02:28:10,983 HEALTHY THURSDAY WEBINARS TO 4008 02:28:10,983 --> 02:28:12,485 INTRODUCE THE FACT THAT LONG 4009 02:28:12,485 --> 02:28:14,653 COVID IS A THING THAT PEOPLE IN 4010 02:28:14,653 --> 02:28:16,589 THE BLACK COMMUNITY HAVE LONG 4011 02:28:16,589 --> 02:28:18,324 COVID, THAT A LOT OF THE 4012 02:28:18,324 --> 02:28:21,394 PROBLEMS THAT THEY'RE 4013 02:28:21,394 --> 02:28:22,962 EXPERIENCING ARE, IN FACT, REAL, 4014 02:28:22,962 --> 02:28:23,696 AND THAT THERE ARE RESOURCES 4015 02:28:23,696 --> 02:28:24,397 THAT PEOPLE IN THE COMMUNITY 4016 02:28:24,397 --> 02:28:26,432 WERE NOT AWARE. 4017 02:28:26,432 --> 02:28:28,167 SO WE DID A SERIES OF HEALTHY 4018 02:28:28,167 --> 02:28:29,602 THURSDAY WEBINARS BEFORE WE 4019 02:28:29,602 --> 02:28:34,073 LAUNCHED OUR RECRUITMENT. 4020 02:28:34,073 --> 02:28:36,175 WITH HER HELP, WE ENGAGED OTHER 4021 02:28:36,175 --> 02:28:36,842 COMMUNITY ORGANIZATIONS IN DANE 4022 02:28:36,842 --> 02:28:39,011 COUNTY ABOUT LONG COVID, AND WE 4023 02:28:39,011 --> 02:28:40,446 ENDED OUR RECRUITMENT, WE WERE 4024 02:28:40,446 --> 02:28:43,382 OUT OF THE FIELD, WE RECRUITED 4025 02:28:43,382 --> 02:28:45,317 185 PEOPLE AND TESTED THEM IN 4026 02:28:45,317 --> 02:28:46,285 SIX MONTHS. 4027 02:28:46,285 --> 02:28:48,521 WHICH WAS REALLY GOOD. 4028 02:28:48,521 --> 02:28:49,889 AND 35% OF OUR SAMPLE ARE 4029 02:28:49,889 --> 02:28:53,659 AFRICAN AMERICAN. 4030 02:28:53,659 --> 02:28:56,595 CAROLA JOINED THE RESEARCH 4031 02:28:56,595 --> 02:28:57,596 COORDINATORS ON RECRUITMENT 4032 02:28:57,596 --> 02:28:58,697 CALL, SHE CALLED THEM TWO WAYS. 4033 02:28:58,697 --> 02:29:00,566 SHE WANTED TO MAKE SURE WHAT MY 4034 02:29:00,566 --> 02:29:01,734 RESEARCH COORDINATORS WERE 4035 02:29:01,734 --> 02:29:02,902 SAYING WAS APPROPRIATE AND WELL 4036 02:29:02,902 --> 02:29:04,537 RECEIVED BY OUR POTENTIAL 4037 02:29:04,537 --> 02:29:05,104 PARTICIPANTS. 4038 02:29:05,104 --> 02:29:06,872 SHE GAVE US FEEDBACK, SHE 4039 02:29:06,872 --> 02:29:07,640 CONTACTED EVERY PARTICIPANT THAT 4040 02:29:07,640 --> 02:29:08,741 WE RECRUITED FROM THE COMMUNITY, 4041 02:29:08,741 --> 02:29:10,843 FOUND OUT WHAT THEIR EXPERIENCE 4042 02:29:10,843 --> 02:29:12,144 WAS, WHAT THEY LIKED, WHAT THEY 4043 02:29:12,144 --> 02:29:12,978 DIDN'T LIKE, AND SHARED THAT 4044 02:29:12,978 --> 02:29:13,946 BACK WITH THE RESEARCH TEAM. 4045 02:29:13,946 --> 02:29:17,716 SO SHE WAS IN OUR RESEARCH TEAM 4046 02:29:17,716 --> 02:29:18,451 MEETINGS EVERY WEEK. 4047 02:29:18,451 --> 02:29:20,886 WE ORGANIZED EDUCATION TETIONS 4048 02:29:20,886 --> 02:29:22,088 AT MOUNT ZION CHURCH AND THE 4049 02:29:22,088 --> 02:29:23,122 PASTOR WHO CAME TO THE SESSIONS 4050 02:29:23,122 --> 02:29:24,690 ASKED US IF WE'D ACTUALLY LIKE 4051 02:29:24,690 --> 02:29:26,792 TO COLLECT OUR DATA AT THE 4052 02:29:26,792 --> 02:29:28,661 CHURCH, WHICH WAS SUCH A GIFT 4053 02:29:28,661 --> 02:29:29,829 BECAUSE STRANGELY ENOUGH, I LOVE 4054 02:29:29,829 --> 02:29:30,830 THE UNIVERSITY OF WISCONSIN 4055 02:29:30,830 --> 02:29:34,600 MADISON, THOSE OF YOU WHO HAVE 4056 02:29:34,600 --> 02:29:37,103 EVER BEEN THERE KNOW WITH HAVE A 4057 02:29:37,103 --> 02:29:38,337 BEAUTIFUL CAMPUS BUT PEOPLE FROM 4058 02:29:38,337 --> 02:29:39,538 THE BLACK COMMUNITY IN MADISON 4059 02:29:39,538 --> 02:29:42,208 ARE AFRAID TO COME ON OUR 4060 02:29:42,208 --> 02:29:43,609 CAMPUS, THEY LITERALLY ARE 4061 02:29:43,609 --> 02:29:45,311 AFRAID TO STEP ON THE CAMPUS. 4062 02:29:45,311 --> 02:29:46,512 SO IF I WANTED TO COLLECT MY 4063 02:29:46,512 --> 02:29:48,047 DATA IN MY OFFICE BUILDING WHERE 4064 02:29:48,047 --> 02:29:50,015 THE OCC BE PAITIONAL THERAPY 4065 02:29:50,015 --> 02:29:51,817 PROGRAM WAS, IT WAS GETTING 4066 02:29:51,817 --> 02:29:52,818 REALLY HARD TO GET PEOPLE TO 4067 02:29:52,818 --> 02:29:53,252 COME IN. 4068 02:29:53,252 --> 02:29:54,553 BUT NOBODY SAID NO TO A TESTING 4069 02:29:54,553 --> 02:29:55,688 SESSION AT MOUNT ZION. 4070 02:29:55,688 --> 02:29:57,223 SO MOUNT ZION GAVE US A TESTING 4071 02:29:57,223 --> 02:29:58,557 SPACE, PROMOTED IT THROUGH THEIR 4072 02:29:58,557 --> 02:29:59,792 WEEKLY BULLETINS AND WE WERE 4073 02:29:59,792 --> 02:30:00,793 ABLE, THROUGH THEIR HELP, TO 4074 02:30:00,793 --> 02:30:03,429 COLLECT THE SAMPLE VERY, VERY 4075 02:30:03,429 --> 02:30:05,097 QUICKLY AND FROM EVERYTHING I'VE 4076 02:30:05,097 --> 02:30:05,831 HEARD FROM THE PARTICIPANTS, IT 4077 02:30:05,831 --> 02:30:09,401 WAS A POSITIVE EXPERIENCE. 4078 02:30:09,401 --> 02:30:11,570 AND THEN WE MADE A COMMITMENT 4079 02:30:11,570 --> 02:30:12,938 THAT -- WE'RE JUST DOING THE 4080 02:30:12,938 --> 02:30:14,006 PRELIMINARY ANALYSES, BUT WE'LL 4081 02:30:14,006 --> 02:30:16,108 BRING THE ANALYSES BACK AT EACH 4082 02:30:16,108 --> 02:30:19,912 STAGE TO THE MOUNT ZION TEAM TO 4083 02:30:19,912 --> 02:30:21,180 GET THEIR FEEDBACK BEFORE WE 4084 02:30:21,180 --> 02:30:22,715 MOVE INTO THE NEXT HIGHER LEVEL 4085 02:30:22,715 --> 02:30:23,782 SETS OF ANALYSES. 4086 02:30:23,782 --> 02:30:24,884 SO IN THE LONG RUN, WE'RE GOING 4087 02:30:24,884 --> 02:30:28,354 TO COME UP WITH A SERIES OF 4088 02:30:28,354 --> 02:30:29,655 RECOMMENDATIONS FOR THE 4089 02:30:29,655 --> 02:30:30,656 COMMUNITY, FOR THE COMMUNITY 4090 02:30:30,656 --> 02:30:33,225 HEALTH WORKERS IN DANE COUNTY TO 4091 02:30:33,225 --> 02:30:34,560 HOW TO ADDRESS AND REFER PEOPLE 4092 02:30:34,560 --> 02:30:36,061 WHO APPEAR WITH LONG COVID. 4093 02:30:36,061 --> 02:30:37,496 SO I COULDN'T HAVE DONE THIS 4094 02:30:37,496 --> 02:30:40,399 PROJECT WITHOUT A COMMUNITY 4095 02:30:40,399 --> 02:30:44,003 PARTNER, AND IT'S SO MUCH BETTER 4096 02:30:44,003 --> 02:30:45,404 WITH HER INVOLVEMENT AND 4097 02:30:45,404 --> 02:30:46,939 ACTUALLY THE ENTIRE MOUNT ZION 4098 02:30:46,939 --> 02:30:47,773 COMMUNITY. 4099 02:30:47,773 --> 02:30:52,344 I GOT A GREAT SET OF SUPPORTERS 4100 02:30:52,344 --> 02:30:54,880 BY WORKING WITH ONE MEMBER OF 4101 02:30:54,880 --> 02:30:56,215 THEIR ORGANIZATION. 4102 02:30:56,215 --> 02:30:57,783 SO I HOPE YOU'LL SEE THAT AS A 4103 02:30:57,783 --> 02:31:00,719 POSITIVE EXAMPLE. 4104 02:31:00,719 --> 02:31:01,921 I'M GOING TO TURN THIS BACK TO 4105 02:31:01,921 --> 02:31:02,254 JOY NOW. 4106 02:31:02,254 --> 02:31:03,622 >> OKAY, THANK YOU, DOROTHY. 4107 02:31:03,622 --> 02:31:04,823 AND WHAT I WANT TO DO IS FOLLOW 4108 02:31:04,823 --> 02:31:06,692 UP ON WHAT DOROTHY JUST GAVE US 4109 02:31:06,692 --> 02:31:09,228 AS THE FIRST EXAMPLE OF 4110 02:31:09,228 --> 02:31:09,862 COMMUNITY-ENGAGED RESEARCH THAT 4111 02:31:09,862 --> 02:31:12,031 WAS FOCUSED IN ON RECRUITMENT 4112 02:31:12,031 --> 02:31:15,167 AND RETENTION. 4113 02:31:15,167 --> 02:31:17,636 AND USE A SECOND EXAMPLE OF HOW 4114 02:31:17,636 --> 02:31:18,804 TO SUSTAIN THAT IMPACT AND 4115 02:31:18,804 --> 02:31:20,239 CHANGE SYSTEMS AND POLICIES LONG 4116 02:31:20,239 --> 02:31:20,439 TERM. 4117 02:31:20,439 --> 02:31:21,106 SPECIFICALLY I'M GOING TO TAKE 4118 02:31:21,106 --> 02:31:22,942 YOU INTO A WHOLE SERIES OF 4119 02:31:22,942 --> 02:31:24,476 COMMUNCOMMUNITY-ENGAGED RESEARCE 4120 02:31:24,476 --> 02:31:26,412 BEEN DOING WITH THE DISABILITY 4121 02:31:26,412 --> 02:31:29,515 COMMUNITY FOCUSED ON IMPROVING 4122 02:31:29,515 --> 02:31:30,616 HEALTH, COMMUNITY LIVING AND 4123 02:31:30,616 --> 02:31:32,585 SOCIAL PARTICIPATION. 4124 02:31:32,585 --> 02:31:34,320 >> WE'VE GOT A QUESTION RIGHT 4125 02:31:34,320 --> 02:31:35,421 HERE, MICHELLE? 4126 02:31:35,421 --> 02:31:35,955 >> SORRY ABOUT THAT. 4127 02:31:35,955 --> 02:31:39,024 I JUST WANTED TO ASK DR. EDWARDS 4128 02:31:39,024 --> 02:31:41,760 A QUICK QUESTION. 4129 02:31:41,760 --> 02:31:44,330 WHEN YOU MENTIONED ABOUT THE 4130 02:31:44,330 --> 02:31:47,566 BEING ABLE TO DO THE EVALUATIONS 4131 02:31:47,566 --> 02:31:49,568 ON SITE, COULD YOU EXPLAIN WHAT 4132 02:31:49,568 --> 02:31:53,239 EXACTLY WERE YOU DOING WITH THE 4133 02:31:53,239 --> 02:31:55,307 GROUP ON SITE IN TERMS OF WHAT 4134 02:31:55,307 --> 02:31:58,911 WERE THE ACTUAL TESTING THAT WAS 4135 02:31:58,911 --> 02:31:59,178 HAPPENING? 4136 02:31:59,178 --> 02:32:00,479 >> SO I'M INTERESTED IN 4137 02:32:00,479 --> 02:32:01,580 SOMETHING CALLED FUNCTIONAL 4138 02:32:01,580 --> 02:32:01,847 COGNITION. 4139 02:32:01,847 --> 02:32:04,450 SO WE HAD A 2 1/2 HOUR-LONG 4140 02:32:04,450 --> 02:32:05,651 COGNITIVE ASSESSMENT BATTERY 4141 02:32:05,651 --> 02:32:08,554 THAT INCLUDED A LOT OF STANDARD 4142 02:32:08,554 --> 02:32:09,755 NEUROCOGNITIVE TESTS AND SOME 4143 02:32:09,755 --> 02:32:13,592 NEWER MEASURES THAT MEASURE 4144 02:32:13,592 --> 02:32:15,928 ACTUAL PERFORMANCE OF EVERYDAY 4145 02:32:15,928 --> 02:32:16,228 ACTIVITIES. 4146 02:32:16,228 --> 02:32:18,330 IT WAS A LONG BATTERY, TOOK 4147 02:32:18,330 --> 02:32:18,764 ABOUT 2 1/2 HOURS. 4148 02:32:18,764 --> 02:32:23,002 WE INCLUDED A 15-MINUTE BREAK. 4149 02:32:23,002 --> 02:32:24,536 BUT MOUNT ZION GAVE US THEIR 4150 02:32:24,536 --> 02:32:25,971 BIBLE STUDY ROOM SO THAT WE 4151 02:32:25,971 --> 02:32:29,308 COULD DO ONE-ON-ONE INDIVIDUAL 4152 02:32:29,308 --> 02:32:31,043 TESTING ON SITE, AND WE DID THEM 4153 02:32:31,043 --> 02:32:32,278 ON WEDNESDAYS AND SATURDAYS. 4154 02:32:32,278 --> 02:32:33,512 THEY WERE REALLY GENEROUS WITH 4155 02:32:33,512 --> 02:32:33,946 THEIR SPACE. 4156 02:32:33,946 --> 02:32:42,388 I HOPE I ANSWERED YOUR QUESTION. 4157 02:32:42,388 --> 02:32:44,256 >> THANKS. 4158 02:32:44,256 --> 02:32:46,592 >> OKAY, I WILL JUMP BACK IN ON 4159 02:32:46,592 --> 02:32:47,359 THE SECOND EXAMPLE HERE. 4160 02:32:47,359 --> 02:32:48,494 JUST TO NOTE THAT THE RESEARCH 4161 02:32:48,494 --> 02:32:49,862 THAT I'LL BE TALKING ABOUT HAS 4162 02:32:49,862 --> 02:32:51,563 BEEN FUNDED THROUGH NIDILRR AND 4163 02:32:51,563 --> 02:32:54,199 THROUGH NIH AND THE UIC CENTER 4164 02:32:54,199 --> 02:32:55,567 FOR CLINICAL AND TRANSLATIONAL 4165 02:32:55,567 --> 02:32:56,435 RESEARCH. 4166 02:32:56,435 --> 02:32:57,736 WHENEVER YOU'RE DOING 4167 02:32:57,736 --> 02:32:58,504 COMMUNITY-ENGAGED RESEARCH, YOU 4168 02:32:58,504 --> 02:33:00,105 REALLY WANT TO LISTEN VERY 4169 02:33:00,105 --> 02:33:01,307 CLOSELY TO THE COMMUNITY ABOUT 4170 02:33:01,307 --> 02:33:03,175 WHAT ARE THE KEY ISSUES THEY'RE 4171 02:33:03,175 --> 02:33:04,610 FACING, WHAT ARE THEIR HIGH 4172 02:33:04,610 --> 02:33:06,512 PRIORITY ITEMS. 4173 02:33:06,512 --> 02:33:07,513 WHAT YOU'RE SEEING HERE IS A 4174 02:33:07,513 --> 02:33:10,549 QUOTE THAT EXEMPLIFIES WHAT THE 4175 02:33:10,549 --> 02:33:11,517 DISABILITY COMMUNITY IDENTIFIED 4176 02:33:11,517 --> 02:33:13,218 AS A HIGH PRIORITY ISSUE. 4177 02:33:13,218 --> 02:33:14,320 THE QUOTE READS, THERE'S SOME 4178 02:33:14,320 --> 02:33:15,421 PEOPLE WHO REALLY NEED A NURSING 4179 02:33:15,421 --> 02:33:15,721 HOME. 4180 02:33:15,721 --> 02:33:17,523 YOU KNOW, PEOPLE WITH REALLY 4181 02:33:17,523 --> 02:33:18,424 SEVERE DISABILITIES THAT CAN'T 4182 02:33:18,424 --> 02:33:20,059 TAKE CARE OF THEMSELVES. 4183 02:33:20,059 --> 02:33:21,593 IT'S FOR THEIR OWN GOOD. 4184 02:33:21,593 --> 02:33:22,961 THEY'LL BE SAFER THERE. 4185 02:33:22,961 --> 02:33:24,930 AND I CAN'T TELL YOU HOW MUCH 4186 02:33:24,930 --> 02:33:27,032 I'VE HEARD THIS FROM HEALTHCARE 4187 02:33:27,032 --> 02:33:28,400 PROFESSIONALS AND POLICYMAKERS 4188 02:33:28,400 --> 02:33:30,502 OVER MANY DIFFERENT PROJECTS. 4189 02:33:30,502 --> 02:33:32,471 WHEREAS THE RESPONSE FROM THE 4190 02:33:32,471 --> 02:33:33,706 DISABILITY COMMUNITY IS, IT'S MY 4191 02:33:33,706 --> 02:33:34,807 RIGHT TO HAVE A CHOICE ABOUT 4192 02:33:34,807 --> 02:33:35,808 WHERE I LIVE. 4193 02:33:35,808 --> 02:33:37,009 AND I WANT TO LIVE IN THE 4194 02:33:37,009 --> 02:33:38,544 COMMUNITY WITH SUPPORTS. 4195 02:33:38,544 --> 02:33:41,213 AND WE KNOW THAT RIGHT HAS BEEN 4196 02:33:41,213 --> 02:33:43,749 MANDATED IN THE AMERICANS WITH 4197 02:33:43,749 --> 02:33:44,817 DISABILITIES ACT CIVIL RIGHT 4198 02:33:44,817 --> 02:33:46,452 LEGISLATION AS WELL AS THE 4199 02:33:46,452 --> 02:33:47,886 SUPREME COURT OLMSTEAD DECISION 4200 02:33:47,886 --> 02:33:50,022 THAT STATES THAT PEOPLE WITH 4201 02:33:50,022 --> 02:33:51,990 DISABILITIES DO HAVE A RIGHT TO 4202 02:33:51,990 --> 02:33:53,058 EXPLORE LEAST RESTRICTIVE 4203 02:33:53,058 --> 02:33:54,827 COMMUNITY LIVING AND STATES DO 4204 02:33:54,827 --> 02:33:57,863 HAVE A RESPONSIBILITY TO PROVIDE 4205 02:33:57,863 --> 02:33:58,831 EQUITABLE ACCESS TO HEALTHCARE 4206 02:33:58,831 --> 02:34:00,265 AND SUPPORTS IN THE COMMUNITY TO 4207 02:34:00,265 --> 02:34:02,101 DO THAT. 4208 02:34:02,101 --> 02:34:03,602 AND SO THIS LED TO A WHOLE 4209 02:34:03,602 --> 02:34:05,671 SERIES OF DIFFERENT 4210 02:34:05,671 --> 02:34:06,772 COMMUNITY-ENGAGED RESEARCH WE 4211 02:34:06,772 --> 02:34:09,508 DID WHICH FALLS REALLY PRETTY 4212 02:34:09,508 --> 02:34:11,310 SQUARELY UNDER PARTICIPATORY 4213 02:34:11,310 --> 02:34:15,681 ACTION RESEARCH, WHICH MEANS THE 4214 02:34:15,681 --> 02:34:16,682 DISABILITY COMMUNITY HAS BEEN 4215 02:34:16,682 --> 02:34:18,784 FULL PARTNERS IN DEFINING, 4216 02:34:18,784 --> 02:34:20,319 INVESTIGATING AND STRATEGIZING 4217 02:34:20,319 --> 02:34:21,754 THESE ISSUES, AND PARTICULARLY 4218 02:34:21,754 --> 02:34:23,889 FOCUSING IN ON THAT RIGHT TO GET 4219 02:34:23,889 --> 02:34:25,724 OUT OF NURSING HOMES AND 4220 02:34:25,724 --> 02:34:27,059 INSTITUTIONS AND INTO THE 4221 02:34:27,059 --> 02:34:28,560 COMMUNITY WITH SUPPORTS. 4222 02:34:28,560 --> 02:34:30,129 SO THE GOALS OF THIS RESEARCH 4223 02:34:30,129 --> 02:34:32,131 CERTAINLY ARE TO IMPROVE THE 4224 02:34:32,131 --> 02:34:33,232 HEALTH COMMUNITY LIVING AND 4225 02:34:33,232 --> 02:34:36,201 SOCIAL PARTICIPATION OF 4226 02:34:36,201 --> 02:34:37,469 DISABILITY COMMUNITY MEMBERS, 4227 02:34:37,469 --> 02:34:39,238 BUT THEY WERE ALSO TO BE ABLE TO 4228 02:34:39,238 --> 02:34:41,173 USE THAT EVIDENCE TO EFFECT 4229 02:34:41,173 --> 02:34:42,841 POLICY AND SYSTEMS CHANGE AND 4230 02:34:42,841 --> 02:34:44,309 THEN THE DISABILITY COMMUNITY 4231 02:34:44,309 --> 02:34:46,545 ALSO WANTED TO BUILD THEIR OWN 4232 02:34:46,545 --> 02:34:47,513 CAPACITY FROM WITHIN. 4233 02:34:47,513 --> 02:34:49,815 THEY KNEW THAT PEOPLE WITH 4234 02:34:49,815 --> 02:34:50,682 DISABILITIES THAT FOUND 4235 02:34:50,682 --> 02:34:52,818 THEMSELVES IN MEDICAID NURSING 4236 02:34:52,818 --> 02:34:54,987 HOMES PUBLICLY FUNDED NURSING 4237 02:34:54,987 --> 02:34:56,088 HOMES AND INSTITUTIONS WERE SOME 4238 02:34:56,088 --> 02:34:58,290 OF THE MOST OPPRESSED AND 4239 02:34:58,290 --> 02:34:59,391 MARGINALIZED PEOPLE WITH 4240 02:34:59,391 --> 02:35:00,959 DISABILITIES OUT THERE. 4241 02:35:00,959 --> 02:35:02,494 BECAUSE THEY WEREN'T GETTING 4242 02:35:02,494 --> 02:35:03,562 ACCESS TO INFORMATION, RIGHT? 4243 02:35:03,562 --> 02:35:05,531 AND SO THEY WANTED TO USE THESE 4244 02:35:05,531 --> 02:35:07,166 PROJECTS TO BUILD THAT CAPACITY 4245 02:35:07,166 --> 02:35:10,002 FROM WITHIN. 4246 02:35:10,002 --> 02:35:11,770 WE USED A LOT OF DIFFERENT 4247 02:35:11,770 --> 02:35:13,372 COMMUNITY-ENGAGED STRATEGIES TO 4248 02:35:13,372 --> 02:35:14,907 MAKE SURE THAT THE COMMUNITY WAS 4249 02:35:14,907 --> 02:35:16,542 ABLE TO COLLABORATE AND BE A 4250 02:35:16,542 --> 02:35:18,877 PARTNER THROUGHOUT THE ENTIRE 4251 02:35:18,877 --> 02:35:19,778 RESEARCH PROCESS LONG BEFORE WE 4252 02:35:19,778 --> 02:35:22,080 EVEN APPLIED FOR THE GRANTS, AND 4253 02:35:22,080 --> 02:35:26,118 LONG AFTER THE GRANTS WERE DONE. 4254 02:35:26,118 --> 02:35:27,586 SO JUST TO HIGHLIGHT A COUPLE OF 4255 02:35:27,586 --> 02:35:28,787 THESE, THE DISABILITY COMMUNITY 4256 02:35:28,787 --> 02:35:32,090 MEMBERS AND ORGANIZATIONAL 4257 02:35:32,090 --> 02:35:33,692 REPRESENTATIVES FROM GROUPS LIKE 4258 02:35:33,692 --> 02:35:35,494 CENTERS FOR INDEPENDENT LIVING 4259 02:35:35,494 --> 02:35:37,296 LIKE WE WORK WITH NATIONALLY 4260 02:35:37,296 --> 02:35:39,565 WERE BROUGHT IN AS KEY PAID 4261 02:35:39,565 --> 02:35:40,766 MEMBERS AND INVESTIGATORS WITHIN 4262 02:35:40,766 --> 02:35:41,600 THE RESEARCH TEAM. 4263 02:35:41,600 --> 02:35:44,503 SO SALARIED STAFF AND POSITIONS 4264 02:35:44,503 --> 02:35:45,871 AS WELL AS CONTRACTS WITH THE 4265 02:35:45,871 --> 02:35:48,006 COMMUNITY ORGANIZATIONS, SO THAT 4266 02:35:48,006 --> 02:35:49,241 THEY HAD THE RESOURCES TO 4267 02:35:49,241 --> 02:35:50,709 ACTUALLY BE ABLE TO REALLY 4268 02:35:50,709 --> 02:35:55,314 PARTICIPATE IN THIS RESEARCH. 4269 02:35:55,314 --> 02:35:56,515 AND BECAUSE OF THAT, WE WERE 4270 02:35:56,515 --> 02:35:59,485 ABLE TO GET A DIVERSE 4271 02:35:59,485 --> 02:36:00,319 REPRESENTATION AND RECRUITMENT 4272 02:36:00,319 --> 02:36:01,453 AND RETENTION, PARTICULARLY OF 4273 02:36:01,453 --> 02:36:02,421 PEOPLE WITH DISABILITIES WHO WE 4274 02:36:02,421 --> 02:36:04,022 KNOW ARE AT GREATER RISK FOR 4275 02:36:04,022 --> 02:36:06,959 LANDING UP IN A PUBLIC NURSING 4276 02:36:06,959 --> 02:36:08,126 HOME, AND THAT INCLUDES PEOPLE 4277 02:36:08,126 --> 02:36:11,129 WHO IDENTIFY AS AFRICAN AMERICAN 4278 02:36:11,129 --> 02:36:13,265 OR BLACK, AS WELL AS HISPANIC OR 4279 02:36:13,265 --> 02:36:14,900 LATINX OR INDIGENOUS GROUPS. 4280 02:36:14,900 --> 02:36:18,437 WE ALSO WERE ABLE TO RECRUIT AND 4281 02:36:18,437 --> 02:36:21,240 RETAIN GROUPS THAT WERE ALMOST 4282 02:36:21,240 --> 02:36:22,975 EXCLUSIVELY LIVING BELOW POVERTY 4283 02:36:22,975 --> 02:36:23,275 LEVELS. 4284 02:36:23,275 --> 02:36:24,676 WE KNOW IN PUBLIC NURSING HOMES 4285 02:36:24,676 --> 02:36:26,845 THAT WHEN PEOPLE GO IN, THEY 4286 02:36:26,845 --> 02:36:27,813 SIGN AWAY THEIR FINANCIAL 4287 02:36:27,813 --> 02:36:30,115 CONTROL, THEY HAVE NO FINANCIAL 4288 02:36:30,115 --> 02:36:31,550 ASSETS UNDERNEATH THEM, WHICH 4289 02:36:31,550 --> 02:36:33,185 MAKES IT REALLY DIFFICULT THEN 4290 02:36:33,185 --> 02:36:36,822 TO MOVE INTO THE COMMUNITY AND 4291 02:36:36,822 --> 02:36:37,956 BE ABLE TO SUPPORT YOURSELF. 4292 02:36:37,956 --> 02:36:39,925 SO THE WAY WE GOT IN IS THROUGH 4293 02:36:39,925 --> 02:36:40,526 THOSE COMMUNITY ORGANIZATIONS 4294 02:36:40,526 --> 02:36:42,461 AND WE CALLED IT THE UNDERGROUND 4295 02:36:42,461 --> 02:36:43,662 NETWORK, RIGHT, BECAUSE THE 4296 02:36:43,662 --> 02:36:44,663 NURSING HOMES WEREN'T OPENING 4297 02:36:44,663 --> 02:36:45,731 THEIR DOORS TO US. 4298 02:36:45,731 --> 02:36:47,232 THEY DIDN'T WANT US TO EVEN COME 4299 02:36:47,232 --> 02:36:49,635 IN TO SPEND TIME WITH PEOPLE. 4300 02:36:49,635 --> 02:36:51,169 BUT THE DISABILITY COMMUNITY 4301 02:36:51,169 --> 02:36:53,171 MEMBERS WERE GETTING IN THERE AS 4302 02:36:53,171 --> 02:36:55,107 FRIENDS AND AS SUPPORT NETWORKS, 4303 02:36:55,107 --> 02:36:58,544 AND THEY'RE THE ONES THAT HELPED 4304 02:36:58,544 --> 02:37:00,178 US TO TALK WITH PEOPLE ABOUT 4305 02:37:00,178 --> 02:37:01,513 THEIR RIGHTS AND ALSO INVITE 4306 02:37:01,513 --> 02:37:03,815 THEM TO BE A PART OF THIS 4307 02:37:03,815 --> 02:37:05,017 RESEARCH, AND IN THE END, WE 4308 02:37:05,017 --> 02:37:06,585 WERE ABLE TO RECRUIT A VERY 4309 02:37:06,585 --> 02:37:09,021 DIVERSE SAMPLE FOR ALL OF THOSE 4310 02:37:09,021 --> 02:37:11,557 CRITERIA. 4311 02:37:11,557 --> 02:37:13,191 THE OTHER THING I WANT TO POINT 4312 02:37:13,191 --> 02:37:13,892 TO HERE IS DOWN THE LIST A 4313 02:37:13,892 --> 02:37:16,194 LITTLE BIT, IS THAT WE BUILT IN 4314 02:37:16,194 --> 02:37:17,696 ACCESSIBILITY AND REASONABLE 4315 02:37:17,696 --> 02:37:19,231 ACCOMMODATIONS INTO OUR GRANT 4316 02:37:19,231 --> 02:37:21,166 BUDGETS AND INTO THE DAY-TO-DAY 4317 02:37:21,166 --> 02:37:24,102 OPERATIONS OF HOW WE TRAINED 4318 02:37:24,102 --> 02:37:25,871 RESEARCH STAFF, SO PEOPLE WITH 4319 02:37:25,871 --> 02:37:26,805 DIVERSE DISABILITIES COULD 4320 02:37:26,805 --> 02:37:27,139 PARTICIPATE. 4321 02:37:27,139 --> 02:37:29,107 NOT ONLY AS PARTICIPANTS IN THE 4322 02:37:29,107 --> 02:37:31,276 RESEARCH STUDY, BUT ALSO AS 4323 02:37:31,276 --> 02:37:32,711 MEMBERS OF THE RESEARCH TEAM AS 4324 02:37:32,711 --> 02:37:33,345 WELL. 4325 02:37:33,345 --> 02:37:36,181 AND YOU'RE SEEING HERE A WHOLE 4326 02:37:36,181 --> 02:37:37,950 HOST OF THINGS THAT WE WERE ABLE 4327 02:37:37,950 --> 02:37:40,586 TO BUILD IN TO FUND TO SUPPORT 4328 02:37:40,586 --> 02:37:42,554 THAT EQUITABLE INCLUSION HERE. 4329 02:37:42,554 --> 02:37:44,056 AND ONE OF THEM I WANT TO POINT 4330 02:37:44,056 --> 02:37:45,824 TO IS FOOD. 4331 02:37:45,824 --> 02:37:49,261 BECAUSE WE WERE QUESTIONED ON 4332 02:37:49,261 --> 02:37:50,262 THAT. 4333 02:37:50,262 --> 02:37:51,330 PEOPLE WERE LIKE WHY DO YOU HAVE 4334 02:37:51,330 --> 02:37:52,464 A BUDGET, YOU CAN'T DO THIS, 4335 02:37:52,464 --> 02:37:53,031 RIGHT? 4336 02:37:53,031 --> 02:37:55,467 WE HAD TO ACTUALLY ADVOCATE WITH 4337 02:37:55,467 --> 02:37:56,768 THE DISABILITY COMMUNITY TO 4338 02:37:56,768 --> 02:37:58,070 POINT OUT THAT THE KIND OF 4339 02:37:58,070 --> 02:38:00,539 RESEARCH WE'RE DOING ISN'T JUST 4340 02:38:00,539 --> 02:38:02,107 A NICE THING TO GIVE PEOPLE 4341 02:38:02,107 --> 02:38:03,642 PIZZA WHEN THEY DO A FOCUS 4342 02:38:03,642 --> 02:38:05,877 GROUP, RIGHT, AS AN INCENTIVE, 4343 02:38:05,877 --> 02:38:07,112 BUT FOR THIS GROUP OF PEOPLE WHO 4344 02:38:07,112 --> 02:38:08,080 LIVED IN PUBLIC NURSING HOMES 4345 02:38:08,080 --> 02:38:12,384 AND IN INSTITUTIONS, THEY 4346 02:38:12,384 --> 02:38:13,952 WEREN'T GETTING ACCESS TO GOOD 4347 02:38:13,952 --> 02:38:15,153 FOOD TO BEGIN WITH, AND THEN 4348 02:38:15,153 --> 02:38:16,622 WHEN WE BROUGHT THEM OUT INTO 4349 02:38:16,622 --> 02:38:17,756 THE COMMUNITY TO WORK WITH US ON 4350 02:38:17,756 --> 02:38:19,358 THESE ISSUES AND TO BE PARTS OF 4351 02:38:19,358 --> 02:38:20,158 THESE INTERVENTIONS THAT HE WITH 4352 02:38:20,158 --> 02:38:23,195 WERE DOING, OFTEN THAT FOOD WAS 4353 02:38:23,195 --> 02:38:24,796 WITHHELD AT THE NURSING HOME. 4354 02:38:24,796 --> 02:38:26,331 BY THE TIME THEY GOT BACK, THEY 4355 02:38:26,331 --> 02:38:27,966 DIDN'T HAVE ANY DINNER. 4356 02:38:27,966 --> 02:38:31,069 AND SO WE NEEDED TO PROVIDE FOOD 4357 02:38:31,069 --> 02:38:32,004 AS A REASONABLE ACCOMMODATION. 4358 02:38:32,004 --> 02:38:35,140 IT WAS A SURVIVAL MECHANISM HERE 4359 02:38:35,140 --> 02:38:36,241 FOR INDIVIDUALS HERE. 4360 02:38:36,241 --> 02:38:38,410 AND IN FACT, WE ACTUALLY 4361 02:38:38,410 --> 02:38:39,745 PROVIDED LOTS OF FOOD IN 4362 02:38:39,745 --> 02:38:40,712 PACKAGES SO THAT THEY COULD TAKE 4363 02:38:40,712 --> 02:38:43,215 IT WITH THEM AND TAKE IT BACK 4364 02:38:43,215 --> 02:38:44,483 AFTERWARDS IN THE NURSING HOME 4365 02:38:44,483 --> 02:38:47,919 AS WELL. 4366 02:38:47,919 --> 02:38:49,788 SO THAT'S JUST ONE EXAMPLE OF A 4367 02:38:49,788 --> 02:38:50,856 COMMUNITY-ENGAGED STRATEGY AND 4368 02:38:50,856 --> 02:38:52,457 HOW TO ADDRESS SOME OF THOSE 4369 02:38:52,457 --> 02:38:53,892 ISSUES OF ACCESSIBILITY AND 4370 02:38:53,892 --> 02:38:56,828 ENGAGEMENT. 4371 02:38:56,828 --> 02:38:58,130 WE ALSO WERE ABLE TO USE A 4372 02:38:58,130 --> 02:38:59,431 NUMBER OF DIFFERENT 4373 02:38:59,431 --> 02:39:00,065 COMMUNITY-ENGAGED RESEARCH 4374 02:39:00,065 --> 02:39:04,670 METHODS THAT COME FROM 4375 02:39:04,670 --> 02:39:07,839 PARTICIPATORY ACTION RESEARCH AT 4376 02:39:07,839 --> 02:39:08,473 CBPR. 4377 02:39:08,473 --> 02:39:09,508 WE TRIED DIFFERENT THINGS WITH 4378 02:39:09,508 --> 02:39:10,742 THE COMMUNITY THAT THEY BRING TO 4379 02:39:10,742 --> 02:39:12,177 US OFTEN IN WHATEVER PROJECT 4380 02:39:12,177 --> 02:39:12,611 WE'RE DOING. 4381 02:39:12,611 --> 02:39:14,413 I WANT TO POINT TO THE FIRST 4382 02:39:14,413 --> 02:39:18,050 ONE, AND THAT IS WE'VE USED 4383 02:39:18,050 --> 02:39:19,885 APPRECIATIVE INQUIRY 4384 02:39:19,885 --> 02:39:20,619 PARTICIPATORY FOCUS GROUPS. 4385 02:39:20,619 --> 02:39:22,187 WE ALL KNOW THAT LOTS OF US LIKE 4386 02:39:22,187 --> 02:39:23,288 TO USE FOCUS GROUPS IN OUR 4387 02:39:23,288 --> 02:39:23,822 RESEARCH, RIGHT? 4388 02:39:23,822 --> 02:39:25,691 BUT TYPICALLY WHAT HAPPENS IN A 4389 02:39:25,691 --> 02:39:30,062 FOCUS GROUP IS THEY ARE DONE AND 4390 02:39:30,062 --> 02:39:32,130 LED BY THE RESEARCHERS 4391 02:39:32,130 --> 02:39:32,798 THEMSELVES. 4392 02:39:32,798 --> 02:39:34,232 THE COMMUNITY COMES IN, SHARES A 4393 02:39:34,232 --> 02:39:36,268 LOT OF INFORMATION BUT THEN IT 4394 02:39:36,268 --> 02:39:39,237 TAKEN BY THE RESEARCHERS AND WE 4395 02:39:39,237 --> 02:39:41,206 DON'T KNOW WHETHER THE COMMUNITY 4396 02:39:41,206 --> 02:39:42,708 EVER EVEN KNOWS WHAT THE RESULTS 4397 02:39:42,708 --> 02:39:44,142 OF THOSE FOCUS GROUPS WERE, MUCH 4398 02:39:44,142 --> 02:39:48,714 LESS USE THEM IN ACTIONS. 4399 02:39:48,714 --> 02:39:50,415 SO AN APPRECIATIVE INQUIRY MODEL 4400 02:39:50,415 --> 02:39:51,650 OF DOING THIS KIND OF RESEARCH, 4401 02:39:51,650 --> 02:39:54,186 IT SHIFT IT A LOT TO A 4402 02:39:54,186 --> 02:39:55,353 COMMUNITY-ENGAGED MODEL OF DOING 4403 02:39:55,353 --> 02:39:57,689 THIS. 4404 02:39:57,689 --> 02:40:00,092 AND SO THESE FOCUS GROUPS ARE 4405 02:40:00,092 --> 02:40:01,193 CO-LED BY DISABILITY COMMUNITY 4406 02:40:01,193 --> 02:40:02,527 MEMBERS WHO HAVE THEMSELVES GONE 4407 02:40:02,527 --> 02:40:03,695 THROUGH GETTING OUT OF A NURSING 4408 02:40:03,695 --> 02:40:05,764 HOME AND INTO THE COMMUNITY AND 4409 02:40:05,764 --> 02:40:07,265 LONG-TERM MANAGING THEIR HEALTH, 4410 02:40:07,265 --> 02:40:07,466 RIGHT? 4411 02:40:07,466 --> 02:40:10,469 SO MORE TRUSTWORTHY AS DOROTHY 4412 02:40:10,469 --> 02:40:14,072 SAID AT THE BEGINNING. 4413 02:40:14,072 --> 02:40:14,973 THE OTHER THING THAT HAPPENS 4414 02:40:14,973 --> 02:40:16,374 WITH THESE FOCUS GROUPS IS 4415 02:40:16,374 --> 02:40:17,976 THEY'RE NOT A ONE-DONE KIND OF 4416 02:40:17,976 --> 02:40:18,443 THING. 4417 02:40:18,443 --> 02:40:22,447 IN APPRECIATIVE INQUIRY, IT 4418 02:40:22,447 --> 02:40:24,149 INVITES YOU TO BE PART OF A 4419 02:40:24,149 --> 02:40:25,550 PROCESS OVER TIME, WHERE THE 4420 02:40:25,550 --> 02:40:26,918 FIRST SET OF FOCUS GROUPS, YOU 4421 02:40:26,918 --> 02:40:28,620 GET TO DISCUSS SOME OF THE 4422 02:40:28,620 --> 02:40:31,156 ISSUES YOU'RE FACING, BUT YOU 4423 02:40:31,156 --> 02:40:33,458 ALSO GET TO IDENTIFY YOUR OWN 4424 02:40:33,458 --> 02:40:34,559 STRENGTHS AND ASSETS THAT YOU'RE 4425 02:40:34,559 --> 02:40:36,094 GOING TO BRING TO TRYING TO 4426 02:40:36,094 --> 02:40:37,195 SOLVE THESE ISSUES. 4427 02:40:37,195 --> 02:40:40,198 AND THEN IT MOVES YOU INTO A 4428 02:40:40,198 --> 02:40:44,569 DREAMING PHASE WHERE YOU GET TO 4429 02:40:44,569 --> 02:40:45,971 NO BOX AROUND IT, JUST 4430 02:40:45,971 --> 02:40:46,738 BRAINSTORM, WHAT DO YOU WANT 4431 02:40:46,738 --> 02:40:47,939 SERVICES TO LOOK LIKE, HOW DO 4432 02:40:47,939 --> 02:40:49,141 YOU WANT THIS INTERVENTION TO 4433 02:40:49,141 --> 02:40:50,075 LOOK LIKE AND DREAM WITH ME. 4434 02:40:50,075 --> 02:40:52,477 AND THEN IT MOVES YOU INTO A 4435 02:40:52,477 --> 02:40:57,582 PHASE OF ACTUAL CONCRETE ACTION 4436 02:40:57,582 --> 02:40:58,350 PLANNING, WHERE COMMUNITIES 4437 02:40:58,350 --> 02:40:59,751 WORKING WITH US AS HEALTHCARE 4438 02:40:59,751 --> 02:41:01,086 RESEARCHERS ON ACTUALLY 4439 02:41:01,086 --> 02:41:01,787 DESIGNING WHAT THE INTERVENTION 4440 02:41:01,787 --> 02:41:02,788 IS GOING TO LOOK LIKE OR WHAT 4441 02:41:02,788 --> 02:41:04,856 THE POLICY CHANGES THAT WE'RE 4442 02:41:04,856 --> 02:41:06,358 ADVOCATING FOR, AND THEY 4443 02:41:06,358 --> 02:41:07,092 SPECIFICALLY PLAN HOW THEY'RE 4444 02:41:07,092 --> 02:41:08,994 GOING TO GET INVOLVED. 4445 02:41:08,994 --> 02:41:13,265 SO PARTICIPATORY FOCUS GROUPS 4446 02:41:13,265 --> 02:41:14,966 UNDER APPRECIATIVE INQUIRY FEEL 4447 02:41:14,966 --> 02:41:16,368 REALLY DIFFERENT AND THEY YIELD 4448 02:41:16,368 --> 02:41:17,803 A LOT MORE INFORMATION, RIGHT, 4449 02:41:17,803 --> 02:41:20,405 THAT'S GOING TO BE REALLY USEFUL 4450 02:41:20,405 --> 02:41:21,406 TO COMMUNITY-ENGAGED 4451 02:41:21,406 --> 02:41:24,242 INTERVENTION DEVELOPMENT. 4452 02:41:24,242 --> 02:41:25,877 THE OTHER THING WE COUPLED WITH 4453 02:41:25,877 --> 02:41:27,045 IS IF YOU LOOK DOWN THE LIST A 4454 02:41:27,045 --> 02:41:28,780 LITTLE BIT, WE DID A LOT WITH 4455 02:41:28,780 --> 02:41:30,882 LIVED EXPERIENCE STORYTELLING. 4456 02:41:30,882 --> 02:41:33,718 WE USED PHOTO VOICE IF PEOPLE 4457 02:41:33,718 --> 02:41:35,320 PREFERRED TO TAKE PICTURES OR 4458 02:41:35,320 --> 02:41:36,855 LIKED A VISUAL WAY OF SHOWING 4459 02:41:36,855 --> 02:41:38,657 THEIR STORY INSTEAD. 4460 02:41:38,657 --> 02:41:43,929 WE CREATED SOCIAL MEDIA U TUBE E 4461 02:41:43,929 --> 02:41:45,163 VIDEOS DIRECTED BY THE COMMUNITY 4462 02:41:45,163 --> 02:41:46,231 TO TELL THEIR STORIES, AND THE 4463 02:41:46,231 --> 02:41:47,532 REASON WE DID THAT AND WE SPENT 4464 02:41:47,532 --> 02:41:51,203 SO MUCH TIME AND EFFORT ON DOING 4465 02:41:51,203 --> 02:41:52,204 THAT IS BECAUSE IF YOU'RE REALLY 4466 02:41:52,204 --> 02:41:53,738 GOING TO TRY TO CHANGE POLICIES 4467 02:41:53,738 --> 02:41:56,441 AND SYSTEMS AND/OR FUNDING 4468 02:41:56,441 --> 02:41:57,742 MECHANISMS HERE, YOU NEED TO NOT 4469 02:41:57,742 --> 02:41:59,945 ONLY HAVE THAT QUANTITATIVE 4470 02:41:59,945 --> 02:42:01,246 INFORMATION THAT YOU GET FROM 4471 02:42:01,246 --> 02:42:03,415 THESE OUT COME ASSESSMENTS, BUT 4472 02:42:03,415 --> 02:42:06,484 YOU ALSO NEED THAT QUALITATIVE 4473 02:42:06,484 --> 02:42:07,252 LIVED EXPERIENCE. 4474 02:42:07,252 --> 02:42:09,187 THE TESTIMONIALS ARE EQUALLY 4475 02:42:09,187 --> 02:42:10,488 POWERFUL TO CHANGING 4476 02:42:10,488 --> 02:42:12,824 POLICYMAKERS OR EVEN POLITICIANS 4477 02:42:12,824 --> 02:42:15,060 TO GET THEM ON BOARD WITH YOU TO 4478 02:42:15,060 --> 02:42:16,595 MAKE THAT CHANGE HAPPEN. 4479 02:42:16,595 --> 02:42:18,864 AND THEN ALL OF THESE WERE 4480 02:42:18,864 --> 02:42:20,532 SHARED IN A WHOLE SERIES OF 4481 02:42:20,532 --> 02:42:22,234 PUBLIC COMMUNITY TOWN HALLS THAT 4482 02:42:22,234 --> 02:42:24,436 WE DO, WE CONTINUE TO DO, WE 4483 02:42:24,436 --> 02:42:26,504 HAVE ONE COMING UP FAIRLY SOON. 4484 02:42:26,504 --> 02:42:28,573 AND THESE ARE OPEN TO ANYBODY 4485 02:42:28,573 --> 02:42:30,742 FROM THE DISABILITY COMMUNITY TO 4486 02:42:30,742 --> 02:42:32,510 JOIN US. 4487 02:42:32,510 --> 02:42:34,145 WE GET A CHANCE TO SHARE WHAT WE 4488 02:42:34,145 --> 02:42:35,447 FOUND IN THE RESEARCH, BUT WE 4489 02:42:35,447 --> 02:42:37,949 ALSO HIGHLIGHT THE STORIES FROM 4490 02:42:37,949 --> 02:42:39,784 THE DISABILITY COMMUNITY, AND 4491 02:42:39,784 --> 02:42:42,220 EVERY ONCE IN A WHILE, WE WILL 4492 02:42:42,220 --> 02:42:44,289 STRATEGICALLY INVITE IN KEY 4493 02:42:44,289 --> 02:42:46,458 POLICYMAKERS LIKE THE STATE OF 4494 02:42:46,458 --> 02:42:48,994 ILLINOIS MEDICAID PROGRAM 4495 02:42:48,994 --> 02:42:51,630 DIRECTORS, OR POLITICIANS, A KEY 4496 02:42:51,630 --> 02:42:52,464 SENATOR, SOMETHING LIKE THAT, 4497 02:42:52,464 --> 02:42:54,099 AND WE'LL ASK THEM TO SIT IN THE 4498 02:42:54,099 --> 02:42:55,967 FRONT ROW OF THE TOWN HALL AND 4499 02:42:55,967 --> 02:42:56,835 JUST LISTEN. 4500 02:42:56,835 --> 02:42:58,436 DON'T SAY ANYTHING, JUST LISTEN 4501 02:42:58,436 --> 02:43:00,639 TO THE STORIES, AND THEN AT THE 4502 02:43:00,639 --> 02:43:02,173 VERY END, WE'LL GIVE THEM A 4503 02:43:02,173 --> 02:43:04,209 CHANCE TO SAY, AND HOW COULD YOU 4504 02:43:04,209 --> 02:43:05,210 ADDRESS THESE ISSUES WITH THE 4505 02:43:05,210 --> 02:43:06,912 COMMUNITY? 4506 02:43:06,912 --> 02:43:09,514 SO WE USE TOWN HALLS VERY 4507 02:43:09,514 --> 02:43:10,215 STRATEGICALLY IN THAT WAY AS 4508 02:43:10,215 --> 02:43:11,182 WELL. 4509 02:43:11,182 --> 02:43:12,817 THIS IS JUST AN EXAMPLE OF ONE 4510 02:43:12,817 --> 02:43:13,818 OF THE INTERVENTIONS THAT WE 4511 02:43:13,818 --> 02:43:15,687 WERE ABLE TO CO-CREATE TOGETHER 4512 02:43:15,687 --> 02:43:17,322 WITH THE DISABILITY COMMUNITY. 4513 02:43:17,322 --> 02:43:19,057 THIS IS CALLED THE STEPPING 4514 02:43:19,057 --> 02:43:20,492 STONES PROGRAM. 4515 02:43:20,492 --> 02:43:21,793 SO IT'S SPECIFICALLY DESIGNED 4516 02:43:21,793 --> 02:43:23,428 FOR PEOPLE WITH DIVERSE 4517 02:43:23,428 --> 02:43:25,830 DISABILITY THAT LANDED UP IN 4518 02:43:25,830 --> 02:43:27,999 PUBLIC MEDICAID NURSING HOMES OR 4519 02:43:27,999 --> 02:43:29,000 INSTITUTIONS, AND IT PROVIDES 4520 02:43:29,000 --> 02:43:31,169 THEM THE STEPPING STONES ON HOW 4521 02:43:31,169 --> 02:43:33,038 YOU GET OUT, HOW DO YOU EVEN 4522 02:43:33,038 --> 02:43:36,174 KNOW WHAT YOUR RIGHT ARE, HOW DO 4523 02:43:36,174 --> 02:43:38,677 YOU FIND ACCESSIBLE HEALTHCARE 4524 02:43:38,677 --> 02:43:40,211 ACCESS AND PRESCRIPTIONS AND 4525 02:43:40,211 --> 02:43:41,313 HOUSING AND TRANSPORTATION AND 4526 02:43:41,313 --> 02:43:42,614 ALL THE DIFFERENT THINGS YOU 4527 02:43:42,614 --> 02:43:45,350 NEED TO EVEN MAKE THE COMMUNITY 4528 02:43:45,350 --> 02:43:46,451 LIVING TRANSITION, AND THEN HOW 4529 02:43:46,451 --> 02:43:48,186 DO YOU DEVELOP STRONG NETWORKS 4530 02:43:48,186 --> 02:43:50,221 OF SOCIAL SUPPORT AND CONNECTION 4531 02:43:50,221 --> 02:43:51,723 THAT KEEP YOU HEALTHY AND WELL 4532 02:43:51,723 --> 02:43:56,394 OUT IN THE COMMUNITY. 4533 02:43:56,394 --> 02:43:58,029 SO THIS IS JUST ONE EXAMPLE OF 4534 02:43:58,029 --> 02:44:00,398 AN INTERVENTION WE WERE ABLE TO 4535 02:44:00,398 --> 02:44:01,066 CO-CREATE, CODELIVER AS WELL AS 4536 02:44:01,066 --> 02:44:02,367 THEN DO A CLINICAL TRIAL 4537 02:44:02,367 --> 02:44:06,438 EVALUATION OF IT. 4538 02:44:06,438 --> 02:44:08,940 SO I WANT TO END WITH, HOW DO 4539 02:44:08,940 --> 02:44:10,475 YOU SUSTAIN THIS IMPACT OVER 4540 02:44:10,475 --> 02:44:14,713 TIME THEN? 4541 02:44:14,713 --> 02:44:15,914 SO EVIDENCE FROM THAT STEPPING 4542 02:44:15,914 --> 02:44:17,015 STONES INTERVENTION I JUST 4543 02:44:17,015 --> 02:44:18,350 SHOWED YOU, AS WELL AS THE 4544 02:44:18,350 --> 02:44:19,451 COMMUNITY-ENGAGED RESEARCH WE 4545 02:44:19,451 --> 02:44:21,953 DID, WAS USED BY THE DISABILITY 4546 02:44:21,953 --> 02:44:26,157 COMMUNITY AND A WHOLE NETWORK OF 4547 02:44:26,157 --> 02:44:28,493 LEGAL LAWYERS AND DISABILITY 4548 02:44:28,493 --> 02:44:32,097 PROTECTION AND ADVOCACY LEGAL 4549 02:44:32,097 --> 02:44:34,032 EXPERTS IN THREE CLASS ACTION 4550 02:44:34,032 --> 02:44:34,899 LAWSUITS AGAINST THE STATE OF 4551 02:44:34,899 --> 02:44:37,335 ILLINOIS MEDICAID. 4552 02:44:37,335 --> 02:44:38,737 UNDER THE ASSERTION THAT PEOPLE 4553 02:44:38,737 --> 02:44:40,171 WITH DISABILITIES IN THIS STATE 4554 02:44:40,171 --> 02:44:41,773 WERE NOT GETTING EQUITABLE 4555 02:44:41,773 --> 02:44:43,308 ACCESS TO GETTING OUT OF NURSING 4556 02:44:43,308 --> 02:44:45,276 HOMES AND INSTITUTIONS AND INTO 4557 02:44:45,276 --> 02:44:46,978 THE COMMUNITY, OR SUPPORTS TO 4558 02:44:46,978 --> 02:44:49,280 STAY OUT THERE. 4559 02:44:49,280 --> 02:44:50,081 THE STATE OF ILLINOIS LOST ALL 4560 02:44:50,081 --> 02:44:52,350 THREE OF THOSE LAWSUITS. 4561 02:44:52,350 --> 02:44:54,719 AND THEN THEY NEEDED TO TO 4562 02:44:54,719 --> 02:44:55,620 MASSIVE POLICY AND SYSTEMS 4563 02:44:55,620 --> 02:44:55,954 CHANGE. 4564 02:44:55,954 --> 02:44:57,689 SO IN THIS CASE, THE POLICY AND 4565 02:44:57,689 --> 02:44:58,857 SYSTEMS CHANGE WAS ALMOST FORCED 4566 02:44:58,857 --> 02:45:01,026 UPON THEM, SHALL WE SAY LEGALLY, 4567 02:45:01,026 --> 02:45:02,193 BUT EITHER WAY, THEY NEEDED TO 4568 02:45:02,193 --> 02:45:03,428 DO IT, RIGHT? 4569 02:45:03,428 --> 02:45:04,763 AND SO THAT'S WHERE THEY LOOKED 4570 02:45:04,763 --> 02:45:07,532 AT OUR STEPPING STONES PROGRAM 4571 02:45:07,532 --> 02:45:08,900 AND THE EVIDENCE WE HAD FROM IT 4572 02:45:08,900 --> 02:45:10,435 THAT IT WAS WORKING. 4573 02:45:10,435 --> 02:45:12,404 AND THEY DECIDED TO ACTUALLY 4574 02:45:12,404 --> 02:45:15,206 FUND STEPPING STONES NOW AS A 4575 02:45:15,206 --> 02:45:17,942 FORMAL PART OF HOME AND 4576 02:45:17,942 --> 02:45:18,476 COMMUNITY-BASED LONG-TERM 4577 02:45:18,476 --> 02:45:19,911 SERVICES AND SUPPORTS IN THE 4578 02:45:19,911 --> 02:45:20,578 STATE OF ILLINOIS. 4579 02:45:20,578 --> 02:45:23,081 SO IT IS NOW BEING DELIVERED BY 4580 02:45:23,081 --> 02:45:23,715 DISABILITY ORGANIZATIONS TO 4581 02:45:23,715 --> 02:45:25,250 THOUSANDS OF PEOPLE THAT HAVE 4582 02:45:25,250 --> 02:45:26,684 BENEFITED FROM IT AND CONTINUES 4583 02:45:26,684 --> 02:45:31,689 TO BE DELIVERED. 4584 02:45:31,689 --> 02:45:34,426 WE ALL SAW THE DISABILITY 4585 02:45:34,426 --> 02:45:35,393 COMMUNITY COLLABORATED NOW ON 4586 02:45:35,393 --> 02:45:37,262 MANY DIFFERENT FEDERAL GRANTS, 4587 02:45:37,262 --> 02:45:38,830 FOLLOW-UP GRANTS TO DEVELOP NEW 4588 02:45:38,830 --> 02:45:40,298 INTERVENTIONS THAT FOCUS IN ON 4589 02:45:40,298 --> 02:45:41,399 HEALTH, COMMUNITY LIVING AND 4590 02:45:41,399 --> 02:45:43,802 SOCIAL PARTICIPATION WITH PEOPLE 4591 02:45:43,802 --> 02:45:44,569 WITH DISABILITIES. 4592 02:45:44,569 --> 02:45:46,404 AND WE'VE WORKED A LOT ON MAKING 4593 02:45:46,404 --> 02:45:48,073 THOSE INTERVENTIONS ACCESSIBLE 4594 02:45:48,073 --> 02:45:49,707 TO AND PARTICIPATORY, 4595 02:45:49,707 --> 02:45:52,277 PARTICULARLY WITH PEOPLE WITH 4596 02:45:52,277 --> 02:45:55,380 STROKE, WITH INTELLECTUAL AND 4597 02:45:55,380 --> 02:45:57,015 DEVELOPMENTAL DISABILITIES, WITH 4598 02:45:57,015 --> 02:45:58,450 TRAUMATIC BRAIN INJURY AND WITH 4599 02:45:58,450 --> 02:45:59,751 MENTAL HEALTH OR PSYCHIATRIC 4600 02:45:59,751 --> 02:46:00,085 DISABILITIES. 4601 02:46:00,085 --> 02:46:01,920 AND SO WE'VE BEEN ABLE TO DO A 4602 02:46:01,920 --> 02:46:05,490 SERIES OF INTERVENTION RESEARCH 4603 02:46:05,490 --> 02:46:07,225 HERE TO ALSO APPLY THIS TO THE 4604 02:46:07,225 --> 02:46:07,859 BROADER DISABILITY COMMUNITY. 4605 02:46:07,859 --> 02:46:09,627 AND THEN THE FINAL POINT I JUST 4606 02:46:09,627 --> 02:46:13,765 WANTED TO POINT TO HERE IS THIS 4607 02:46:13,765 --> 02:46:16,401 LAST POINT IS THE DISABILITY 4608 02:46:16,401 --> 02:46:18,803 COMMUNITY CAME TO US AT UIC AND 4609 02:46:18,803 --> 02:46:20,071 SAID WE WANT TO GO EVEN FURTHER. 4610 02:46:20,071 --> 02:46:22,907 WE WANT YOU TO, ON A NATIONAL 4611 02:46:22,907 --> 02:46:24,742 BASIS FOR US, DOCUMENT THE 4612 02:46:24,742 --> 02:46:25,844 DISPARITIES THAT PEOPLE WITH 4613 02:46:25,844 --> 02:46:27,378 DISABILITIES AS A POPULATION ARE 4614 02:46:27,378 --> 02:46:28,346 FACING IN THE UNITED STATES 4615 02:46:28,346 --> 02:46:29,581 TODAY. 4616 02:46:29,581 --> 02:46:31,282 NOT ONLY IN ACCESSING 4617 02:46:31,282 --> 02:46:32,817 HEALTHCARE, BUT ALSO IN 4618 02:46:32,817 --> 02:46:35,353 COMMUNITY LIVING, IN GETTING 4619 02:46:35,353 --> 02:46:37,088 INTO THE WORKFORCE, IN BEING 4620 02:46:37,088 --> 02:46:40,125 ABLE TO EQUITABLY PARTICIPATE IN 4621 02:46:40,125 --> 02:46:40,792 COMMUNITIES. 4622 02:46:40,792 --> 02:46:44,629 AND SO THAT'S WHERE WE'RE NOW 4623 02:46:44,629 --> 02:46:46,831 WORKING ON A FEDERAL CENTER 4624 02:46:46,831 --> 02:46:48,533 GRANT WITH THE COMMUNITY TO 4625 02:46:48,533 --> 02:46:52,036 DOCUMENT THOSE DISPARITIES USING 4626 02:46:52,036 --> 02:46:53,471 LARGE SCALE POPULATION HEALTH 4627 02:46:53,471 --> 02:46:55,206 DATA AND DATASETS, AND WE NOW 4628 02:46:55,206 --> 02:46:58,610 PUT THAT AT A WEBSITE THAT WE'VE 4629 02:46:58,610 --> 02:46:59,177 CODEVELOPED TOGETHER. 4630 02:46:59,177 --> 02:47:03,414 YOU CAN SEE THE WEBSITE FOR 4631 02:47:03,414 --> 02:47:04,849 ADAPARC HERE WHERE IT'S IN 4632 02:47:04,849 --> 02:47:06,684 ACCESSIBLE VERSIONS, EASY TO 4633 02:47:06,684 --> 02:47:08,153 READ FORMAT SO THAT THE 4634 02:47:08,153 --> 02:47:08,753 DISABILITY COMMUNITY CAN TAKE 4635 02:47:08,753 --> 02:47:10,288 THIS INFORMATION AS WELL AS 4636 02:47:10,288 --> 02:47:11,923 POLICYMAKERS AND THEY CAN SHOW 4637 02:47:11,923 --> 02:47:15,527 AT A NATIONAL, AT A STATE, AT A 4638 02:47:15,527 --> 02:47:18,930 CITY AND DOWN TO EVEN A ZIP CODE 4639 02:47:18,930 --> 02:47:19,797 LEVEL, ARE PEOPLE WITH 4640 02:47:19,797 --> 02:47:22,100 DISABILITIES GETTING EQUITABLE 4641 02:47:22,100 --> 02:47:23,168 OPPORTUNITIES, SIMILAR TO WHAT 4642 02:47:23,168 --> 02:47:23,835 PEOPLE WITHOUT DISABILITIES 4643 02:47:23,835 --> 02:47:24,802 WOULD BE GETTING. 4644 02:47:24,802 --> 02:47:26,437 AND SO THAT'S WHERE WE'VE TAKEN 4645 02:47:26,437 --> 02:47:29,841 IT IN TERMS OF THE SUSTAINED 4646 02:47:29,841 --> 02:47:30,642 IMPACT ON A MUCH MORE POPULATION 4647 02:47:30,642 --> 02:47:32,977 LEVEL. 4648 02:47:32,977 --> 02:47:34,479 AND I'D LIKE TO HAND IT BACK TO 4649 02:47:34,479 --> 02:47:39,017 DOROTHY TO WRAP US UP THEN. 4650 02:47:39,017 --> 02:47:42,587 >> SO IN OUR CLOSING, OBVIOUSLY 4651 02:47:42,587 --> 02:47:43,488 WE'RE PREACHING TO THE CHOIR 4652 02:47:43,488 --> 02:47:45,123 HERE WHEN WE EMPHASIZE THE 4653 02:47:45,123 --> 02:47:46,524 IMPORTANCE OF SOCIAL 4654 02:47:46,524 --> 02:47:47,392 PARTICIPATION AND PARTICIPATION 4655 02:47:47,392 --> 02:47:50,795 IN GENERAL. 4656 02:47:50,795 --> 02:47:54,499 AND OBVIOUSLY NCMRR HAS BEEN 4657 02:47:54,499 --> 02:47:56,834 CRITICAL IN ADVANCING THAT AS 4658 02:47:56,834 --> 02:47:58,102 THE ULTIMATE GOAL OF ANY 4659 02:47:58,102 --> 02:47:58,436 INTERVENTION. 4660 02:47:58,436 --> 02:48:00,939 SO THE GUIDANCE FOR EFFECTIVE 4661 02:48:00,939 --> 02:48:02,106 COMMUNITY-ENGAGED RESEARCH 4662 02:48:02,106 --> 02:48:04,309 PROGRAMS WHETHER YOU'RE DOING 4663 02:48:04,309 --> 02:48:05,176 COMMUNITY-BASED PARTICIPATORY 4664 02:48:05,176 --> 02:48:07,579 ACTION RESEARCH OR MY KIND OF 4665 02:48:07,579 --> 02:48:08,379 COMMUNITY-ENGAGED RESEARCHER ARE 4666 02:48:08,379 --> 02:48:09,547 PRETTY MUCH THE SAME. 4667 02:48:09,547 --> 02:48:10,682 THEY'RE ESSENTIALLY THE SAME AS 4668 02:48:10,682 --> 02:48:11,849 FIRST OF ALL THE PARTNERSHIPS 4669 02:48:11,849 --> 02:48:13,918 NEED TO BE ESTABLISHED THAT ARE 4670 02:48:13,918 --> 02:48:14,552 TRULY RECIPROCAL. 4671 02:48:14,552 --> 02:48:16,521 YOU HAVE TO COMMIT TO SHARED 4672 02:48:16,521 --> 02:48:18,022 AUTHORITY, AND THAT TAKES TIME. 4673 02:48:18,022 --> 02:48:20,024 YOU CAN'T WRITE IN A REVIEW BY A 4674 02:48:20,024 --> 02:48:21,092 COMMUNITY ADVISORY COMMITTEE, 4675 02:48:21,092 --> 02:48:23,294 YOU KNOW, JUST BEFORE YOU SUBMIT 4676 02:48:23,294 --> 02:48:24,829 YOUR GRANT OR MOSTLY AFTER YOU 4677 02:48:24,829 --> 02:48:28,666 SUBMIT YOUR GRANT AND SAY OKAY, 4678 02:48:28,666 --> 02:48:30,668 YOU HAVE TO RECOGNIZE THE VALUE 4679 02:48:30,668 --> 02:48:31,936 OF THE LIVED EXPERIENCE AND 4680 02:48:31,936 --> 02:48:33,571 EXPERTISE OF COMMUNITY PARTNERS. 4681 02:48:33,571 --> 02:48:34,439 I'LL JUST BRIEFLY SAY THAT I 4682 02:48:34,439 --> 02:48:36,074 THINK THE RECOVER TRIALS FOR 4683 02:48:36,074 --> 02:48:37,375 LONG COVID WOULD BE A WHOLE LOT 4684 02:48:37,375 --> 02:48:39,911 MORE SUCCESSFUL IF ACTUALLY THEY 4685 02:48:39,911 --> 02:48:42,213 HAD DOCUMENTED THE LIVED 4686 02:48:42,213 --> 02:48:43,214 EXPERIENCE OF PEOPLE WITH LONG 4687 02:48:43,214 --> 02:48:44,315 COVID BECAUSE THE DEPENDENT 4688 02:48:44,315 --> 02:48:45,250 MEASURES IN MANY OF THESE 4689 02:48:45,250 --> 02:48:47,352 STUDIES ARE BEING ACHIEVED AND 4690 02:48:47,352 --> 02:48:48,653 SOME OF THE INTERVENTIONS BUT 4691 02:48:48,653 --> 02:48:49,954 PEOPLE AREN'T ABLE TO DO MORE, 4692 02:48:49,954 --> 02:48:50,955 THEY'RE NOT GOING BACK TO WORK, 4693 02:48:50,955 --> 02:48:52,457 THEY'RE NOT ABLE TO MANAGE 4694 02:48:52,457 --> 02:48:53,458 FAMILY RESPONSIBILITIES. 4695 02:48:53,458 --> 02:48:56,527 SO WHAT IS THE IMPACT OF ALL 4696 02:48:56,527 --> 02:48:57,829 THESE INTERVENTION STUDIES IF 4697 02:48:57,829 --> 02:48:59,230 IT'S NOT TO ACTUALLY HELP PEOPLE 4698 02:48:59,230 --> 02:49:00,665 GO BACK TO THE THINGS THAT ARE 4699 02:49:00,665 --> 02:49:04,035 MOST IMPORTANT TO THEM? 4700 02:49:04,035 --> 02:49:05,903 YOU HAVE TO BE INTENTIONAL. 4701 02:49:05,903 --> 02:49:06,804 YOU JUST CAN'T TAKE THE 4702 02:49:06,804 --> 02:49:08,339 COMMUNITY ADVISORY GROUP THAT 4703 02:49:08,339 --> 02:49:10,074 SOME OTHER PERSON PUT TOGETHER 4704 02:49:10,074 --> 02:49:11,843 FOR ANOTHER PROJECT. 4705 02:49:11,843 --> 02:49:14,312 IT REALLY REQUIRES UNDERSTANDING 4706 02:49:14,312 --> 02:49:16,281 WHO'S IN THE COMMUNITY, WHOSE 4707 02:49:16,281 --> 02:49:18,683 VOICES NEED TO BE HEARD, AND AS 4708 02:49:18,683 --> 02:49:20,451 JOYCE SAID, YOU HAVE TO HAVE 4709 02:49:20,451 --> 02:49:22,086 MULTIPLE REPRESENTATIVES, NOT A 4710 02:49:22,086 --> 02:49:23,187 SINGLE ONE, AND YOU CAN'T HAVE 4711 02:49:23,187 --> 02:49:26,224 THE INVESTIGATORS OUTNUMBERING 4712 02:49:26,224 --> 02:49:27,292 THE COMMUNITY PARTNERS AT THE 4713 02:49:27,292 --> 02:49:28,359 MEETING. 4714 02:49:28,359 --> 02:49:30,361 YOU'LL OFTEN GO -- I'LL OFTEN GO 4715 02:49:30,361 --> 02:49:31,763 TO MEETINGS, THERE ARE 10 OF US 4716 02:49:31,763 --> 02:49:32,397 AND FIVE COMMUNITY 4717 02:49:32,397 --> 02:49:32,964 REPRESENTATIVES AND THERE'S 4718 02:49:32,964 --> 02:49:33,931 SOMETHING WRONG WITH THAT 4719 02:49:33,931 --> 02:49:35,566 PICTURE. 4720 02:49:35,566 --> 02:49:37,201 ADOPTING INCLUSIVE LANGUAGE 4721 02:49:37,201 --> 02:49:38,303 TITLES, ROLES AND 4722 02:49:38,303 --> 02:49:39,304 RESPONSIBILITIES AND MAKING SURE 4723 02:49:39,304 --> 02:49:41,272 THAT ALL YOUR MATERIALS ARE 4724 02:49:41,272 --> 02:49:42,440 ACCESSIBLE BEFORE THEY'RE 4725 02:49:42,440 --> 02:49:44,842 PRESENTED IS REALLY IMPORTANT. 4726 02:49:44,842 --> 02:49:45,910 APPRECIATION IS PARTICULARLY 4727 02:49:45,910 --> 02:49:47,045 IMPORTANT BUT YOU HAVE TO KNOW 4728 02:49:47,045 --> 02:49:49,981 WHAT INCENTIVES ARE BEST FOR THE 4729 02:49:49,981 --> 02:49:50,982 COMMUNITY. 4730 02:49:50,982 --> 02:49:52,650 I RAN INTO TROUBLE ONCE, I WAS 4731 02:49:52,650 --> 02:49:55,787 DOING A STUDY OF 4732 02:49:55,787 --> 02:49:56,421 VIOLENCE-ASSOCIATED SPINAL CORD 4733 02:49:56,421 --> 02:49:58,623 INJURY IN MILWAUKEE, AND THE 4734 02:49:58,623 --> 02:50:00,625 YOUNG MEN WHO WERE PARTICIPATING 4735 02:50:00,625 --> 02:50:03,561 IN OUR PROJECT ACTUALLY WANTED 4736 02:50:03,561 --> 02:50:05,496 GIFT CERTIFICATES TO A SHOE 4737 02:50:05,496 --> 02:50:07,699 STORE, AND THE IRB SAID THAT'S 4738 02:50:07,699 --> 02:50:09,867 INSULTING, WHY WOULD PEOPLE WITH 4739 02:50:09,867 --> 02:50:10,868 SPINAL CORD INJURY OBVIOUSLY 4740 02:50:10,868 --> 02:50:12,503 CAN'T WALK, SO WHY WOULD YOU BE 4741 02:50:12,503 --> 02:50:14,138 GIVING THEM GIFT CERTIFICATES TO 4742 02:50:14,138 --> 02:50:14,872 A SHOE STORE? 4743 02:50:14,872 --> 02:50:16,240 IT'S LIKE, WELL, YOU KNOW, THEY 4744 02:50:16,240 --> 02:50:17,342 WEAR SHOES AND THIS IS WHAT THEY 4745 02:50:17,342 --> 02:50:17,775 ASKED FOR. 4746 02:50:17,775 --> 02:50:18,943 I WANT TO GIVE THEM WHAT THEY 4747 02:50:18,943 --> 02:50:19,377 ASKED FOR. 4748 02:50:19,377 --> 02:50:20,578 THIS IS WHAT THEY SAID. 4749 02:50:20,578 --> 02:50:22,880 AND SO BEING RESPONSIVE TO YOUR 4750 02:50:22,880 --> 02:50:24,649 POTENTIAL PARTICIPANTS IS REALLY 4751 02:50:24,649 --> 02:50:25,083 IMPORTANT. 4752 02:50:25,083 --> 02:50:28,453 OFFERING TRAINING. 4753 02:50:28,453 --> 02:50:29,987 OFTEN THE YOUR RESEARCH TEAM 4754 02:50:29,987 --> 02:50:31,556 NEEDS AS MUCH AND MORE TRAINING 4755 02:50:31,556 --> 02:50:32,156 THAN THE COMMUNITY 4756 02:50:32,156 --> 02:50:32,590 ORGANIZATIONS. 4757 02:50:32,590 --> 02:50:33,725 THERE'S A GREAT DEAL OF WISDOM 4758 02:50:33,725 --> 02:50:35,526 IN THE COMMUNITY THAT OFTEN GOES 4759 02:50:35,526 --> 02:50:36,728 UNRECOGNIZED. 4760 02:50:36,728 --> 02:50:39,063 YOU MAKE LONG TERM PLANS BUT 4761 02:50:39,063 --> 02:50:40,264 WORK TOWARDS SHORT TERM GOALS, 4762 02:50:40,264 --> 02:50:44,068 AND I THINK JOY'S EXAMPLE IS 4763 02:50:44,068 --> 02:50:45,269 REALLY THE BEST ILLUSTRATION TO 4764 02:50:45,269 --> 02:50:47,238 GO FROM A SINGLE STUDY 4765 02:50:47,238 --> 02:50:49,974 LOOKING -- A STUDY LOOKING AT 4766 02:50:49,974 --> 02:50:51,275 INDIVIDUALS IN 4767 02:50:51,275 --> 02:50:52,377 MEDICAID-SUPPORTED NURSING HOMES 4768 02:50:52,377 --> 02:50:56,547 TO A NATIONAL NETWORK AND WAY OF 4769 02:50:56,547 --> 02:50:59,817 MEASURING INEQUITIES IN 4770 02:50:59,817 --> 02:51:01,586 COMMUNITIES IS REALLY THE TRUE 4771 02:51:01,586 --> 02:51:03,554 STORY OF THE BENEFITS OF 4772 02:51:03,554 --> 02:51:04,756 COMMUNITY-BASED PARTICIPATORY 4773 02:51:04,756 --> 02:51:05,022 RESEARCH. 4774 02:51:05,022 --> 02:51:06,591 AND YOU HAVE TO COMMIT TO 4775 02:51:06,591 --> 02:51:08,459 HONESTY AND TRANSPARENCY, YOU 4776 02:51:08,459 --> 02:51:11,329 CAN'T OVERCOMMIT. 4777 02:51:11,329 --> 02:51:12,730 PEOPLE -- IN MY EXPERIENCE 4778 02:51:12,730 --> 02:51:14,699 COMMUNITY PARTNERS WILL LIVE 4779 02:51:14,699 --> 02:51:16,768 WITH WHAT YOU HAVE IF THEY KNOW 4780 02:51:16,768 --> 02:51:17,635 THEY'RE NOT GETTING THE SHORT 4781 02:51:17,635 --> 02:51:18,302 END OF THE STICK. 4782 02:51:18,302 --> 02:51:21,406 SO THAT'S SORT OF OUR QUICK 4783 02:51:21,406 --> 02:51:21,973 OVERVIEW. 4784 02:51:21,973 --> 02:51:23,174 I'M LOOKING FORWARD -- WE'RE 4785 02:51:23,174 --> 02:51:24,175 BOTH LOOKING FORWARD TO HEARING 4786 02:51:24,175 --> 02:51:29,180 YOUR QUESTIONS. 4787 02:51:29,180 --> 02:51:30,715 I THINK THIS IS THE WAY TO GO, I 4788 02:51:30,715 --> 02:51:32,450 THINK ALL RESEARCH NEEDS TO BE 4789 02:51:32,450 --> 02:51:32,850 COMMUNITY-ENGAGED. 4790 02:51:32,850 --> 02:51:34,419 AND IF YOU HAVE ANY SPECIFIC 4791 02:51:34,419 --> 02:51:37,822 QUESTIONS, PLEASE FEEL FREE TO 4792 02:51:37,822 --> 02:51:38,322 CONTACT JOY OR ME. 4793 02:51:38,322 --> 02:51:40,191 >> WELL, THIS IS A FEISTY GROUP 4794 02:51:40,191 --> 02:51:42,260 AND THEY DO HAVE SOME QUESTIONS. 4795 02:51:42,260 --> 02:51:43,728 >> OKAY. 4796 02:51:43,728 --> 02:51:51,202 >> WE'LL START WITH -- 4797 02:51:51,202 --> 02:51:53,438 >> MY QUESTION FOR DR. EDWARDS, 4798 02:51:53,438 --> 02:51:54,639 I ABSOLUTELY LOVED YOUR 4799 02:51:54,639 --> 02:51:55,840 PARTNERSHIP WITH THE MOUNT ZION 4800 02:51:55,840 --> 02:51:56,340 CHURCH. 4801 02:51:56,340 --> 02:51:59,310 I MEAN, I'VE SEEN MANY 4802 02:51:59,310 --> 02:52:03,147 COMMUNITY-ENGAGED PROGRAMS, 4803 02:52:03,147 --> 02:52:04,248 PARTNERSHIPS LIKE THAT WITH 4804 02:52:04,248 --> 02:52:05,450 CHURCHES WHERE IT LIKE BRINGING 4805 02:52:05,450 --> 02:52:09,520 IN FLU SHOT CLINICS, COVID SHOT 4806 02:52:09,520 --> 02:52:10,488 CLINICS, SO THERE'S A LOT OF 4807 02:52:10,488 --> 02:52:11,923 THAT WORK GOING ON BUT JUST NOT 4808 02:52:11,923 --> 02:52:14,325 IN RESEARCH. 4809 02:52:14,325 --> 02:52:15,760 SO I THINK THIS IS DEFINITELY AN 4810 02:52:15,760 --> 02:52:18,396 AREA THAT PEOPLE COULD TAP INTO. 4811 02:52:18,396 --> 02:52:21,466 I'M CURIOUS HOW DID YOU CONNECT 4812 02:52:21,466 --> 02:52:24,502 WITH YOUR COMMUNITY PART, HOW 4813 02:52:24,502 --> 02:52:25,970 DID YOU CONNECT? 4814 02:52:25,970 --> 02:52:27,238 >> THAT'S A GREAT QUESTION. 4815 02:52:27,238 --> 02:52:31,275 SO MY COMMUNITY PARTNER, 4816 02:52:31,275 --> 02:52:32,477 MS. CAROLA PETERSON GAINES IS 4817 02:52:32,477 --> 02:52:34,946 FUNDED THROUGH THE NIA R33 THAT 4818 02:52:34,946 --> 02:52:35,446 WE HAVE. 4819 02:52:35,446 --> 02:52:37,081 I HAPPEN TO BE A P.I. ON THAT 4820 02:52:37,081 --> 02:52:39,383 BUT I REALLY NEEDED HELP WITH MY 4821 02:52:39,383 --> 02:52:42,553 OWN SPECIFIC STUDY, SO CAROLA 4822 02:52:42,553 --> 02:52:43,321 VOLUNTEERED TO HELP ME AND SHE 4823 02:52:43,321 --> 02:52:44,288 STARTED FROM THE VERY TIME THAT 4824 02:52:44,288 --> 02:52:46,257 WE STARTED DRAFTING THE PROPOSAL 4825 02:52:46,257 --> 02:52:48,226 FOR INTRAMURAL FUNDING. 4826 02:52:48,226 --> 02:52:51,162 AND SO THAT'S WHAT THIS 4827 02:52:51,162 --> 02:52:53,264 R33 DOES, IS IT PAIRS COMMUNITY 4828 02:52:53,264 --> 02:52:55,800 PARTNERS WITH INVESTIGATORS, 4829 02:52:55,800 --> 02:52:56,634 IDEALLY AT THE BEGINNING PHASE 4830 02:52:56,634 --> 02:52:59,170 OF THEIR STUDY DESIGN. 4831 02:52:59,170 --> 02:53:01,205 >> I HAD ONE LAST QUESTION. 4832 02:53:01,205 --> 02:53:06,811 I'D LOVE TO READ YOUR STUDY ON 4833 02:53:06,811 --> 02:53:07,912 VIOLENCE IN SPINAL CORD INJURY, 4834 02:53:07,912 --> 02:53:09,547 SO CAN I REACH OUT TO YOU ABOUT 4835 02:53:09,547 --> 02:53:09,747 THAT? 4836 02:53:09,747 --> 02:53:11,382 >> IT ACTUALLY NEVER GOT 4837 02:53:11,382 --> 02:53:12,617 PUBLISHED. 4838 02:53:12,617 --> 02:53:17,788 IN PART BECAUSE THE FINDINGS 4839 02:53:17,788 --> 02:53:19,257 WERE REALLY CONTROVERSIAL. 4840 02:53:19,257 --> 02:53:21,859 MILWAUKEE IS THE CAPITOL OF 4841 02:53:21,859 --> 02:53:22,860 VIOLENCE-ASSOCIATED SPINAL CORD 4842 02:53:22,860 --> 02:53:23,127 INJURIES. 4843 02:53:23,127 --> 02:53:24,295 THEY ACTUALLY WANTED TO GO BACK 4844 02:53:24,295 --> 02:53:25,596 TO WHAT THEY WERE DOING PRIOR TO 4845 02:53:25,596 --> 02:53:27,999 THEIR INJURY, AND 4846 02:53:27,999 --> 02:53:28,866 MYCOINVESTIGATOR, WHO IS A 4847 02:53:28,866 --> 02:53:30,768 PHYSICIAN AT THE MEDICAL COLLEGE 4848 02:53:30,768 --> 02:53:31,602 OF WISCONSIN, WAS SO 4849 02:53:31,602 --> 02:53:32,537 UNCOMFORTABLE WITH THAT FINDING, 4850 02:53:32,537 --> 02:53:33,671 HE DIDN'T WANT US TO MOVE 4851 02:53:33,671 --> 02:53:37,975 FORWARD WITH THE PUBLICATION. 4852 02:53:37,975 --> 02:53:38,509 >> UNDERSTOOD. 4853 02:53:38,509 --> 02:53:38,809 THANK YOU. 4854 02:53:38,809 --> 02:53:41,312 >> SO I'M SORRY. 4855 02:53:41,312 --> 02:53:42,380 >> THAT'S OKAY. 4856 02:53:42,380 --> 02:53:46,551 IT'S ANOTHER CONVERSATION. 4857 02:53:46,551 --> 02:53:48,853 >> KARL, I WANT TO ASK A 4858 02:53:48,853 --> 02:53:50,821 QUESTION, THEN KATHLEEN HAS A 4859 02:53:50,821 --> 02:53:51,455 QUESTION FROM ZOOM LAND. 4860 02:53:51,455 --> 02:53:55,526 >> MY NAME IS KARL COOPER, 4861 02:53:55,526 --> 02:53:56,294 EXECUTIVE DIRECTOR OF THE 4862 02:53:56,294 --> 02:53:57,495 ASSOCIATION ON HEALTH AND 4863 02:53:57,495 --> 02:53:58,362 DISABILITY, YOU'RE SPEAKING OUR 4864 02:53:58,362 --> 02:53:59,597 LANGUAGE. 4865 02:53:59,597 --> 02:54:01,332 I LOVE TO HEAR THIS 4866 02:54:01,332 --> 02:54:02,300 PRESENTATION, IT WAS FANTASTIC. 4867 02:54:02,300 --> 02:54:03,534 I HAVE A COUPLE STATEMENTS AND I 4868 02:54:03,534 --> 02:54:04,835 DO HAVE TWO QUESTIONS. 4869 02:54:04,835 --> 02:54:06,704 FIRST OF ALL, I WOULD POINT OUT, 4870 02:54:06,704 --> 02:54:08,739 AND I'M SURE THAT YOU ARE 4871 02:54:08,739 --> 02:54:10,641 ALREADY AWARE OF THIS, AND 4872 02:54:10,641 --> 02:54:14,145 PRACTICE THIS, WHEN YOU'RE 4873 02:54:14,145 --> 02:54:17,014 TALKING ABOUT REPRESENTATION OF 4874 02:54:17,014 --> 02:54:18,316 DIVERSITY AND INCLUSION, IT GOES 4875 02:54:18,316 --> 02:54:20,818 BEYOND JUST INCLUDING 4876 02:54:20,818 --> 02:54:22,320 DISABILITY, IT'S ALSO DIVERSITY 4877 02:54:22,320 --> 02:54:23,220 AMONG THAT. 4878 02:54:23,220 --> 02:54:24,121 FOR INSTANCE, WHENEVER YOU'RE 4879 02:54:24,121 --> 02:54:25,756 DOING OUTREACH AND PUTTING 4880 02:54:25,756 --> 02:54:26,857 IMAGES AND STUFF LIKE THAT, THE 4881 02:54:26,857 --> 02:54:29,026 COMMON EXAMPLE I ALWAYS GET IS, 4882 02:54:29,026 --> 02:54:30,428 RESONATES WITH ME, IS THAT WHITE 4883 02:54:30,428 --> 02:54:31,028 PEOPLE IN WHEELCHAIRS. 4884 02:54:31,028 --> 02:54:32,997 AND FOR ME, THAT WORKS. 4885 02:54:32,997 --> 02:54:34,732 BUT THAT DOESN'T WORK FOR A LOT 4886 02:54:34,732 --> 02:54:36,067 OF PEOPLE WITH DISABILITIES. 4887 02:54:36,067 --> 02:54:37,702 AND MAKING SURE THAT WE'RE 4888 02:54:37,702 --> 02:54:39,103 INCLUDING NOT JUST DIVERSITY OF 4889 02:54:39,103 --> 02:54:41,973 DISABILITY BUT ALSO DIVERSITY OF 4890 02:54:41,973 --> 02:54:43,941 RACE AND ETHNICITY THAT 4891 02:54:43,941 --> 02:54:46,210 OBVIOUSLY THERE IS 4892 02:54:46,210 --> 02:54:47,745 INTERSECTIONALITY OF DISABILITY 4893 02:54:47,745 --> 02:54:52,683 AND OTHER POPULATION GROUPS. 4894 02:54:52,683 --> 02:54:53,951 THAT'S MY STATEMENT. 4895 02:54:53,951 --> 02:54:55,987 THE OTHER AREA IS REALLY MORE 4896 02:54:55,987 --> 02:54:57,021 ON -- OR THE TWO QUESTIONS I 4897 02:54:57,021 --> 02:55:01,058 HAVE IS REALLY MORE DIRECTED AT 4898 02:55:01,058 --> 02:55:02,293 SORT OF BROAD APPROACHES ON 4899 02:55:02,293 --> 02:55:06,697 COMMUNITY ENGAGEMENT, AND THAT 4900 02:55:06,697 --> 02:55:08,132 IS IN TERMS OF WHEN YOU'RE 4901 02:55:08,132 --> 02:55:09,433 TRYING TO DO A STUDY, WHETHER 4902 02:55:09,433 --> 02:55:12,837 IT'S THE ONE, DR. EDWARDS, THAT 4903 02:55:12,837 --> 02:55:19,076 YOU WERE DOING ON THE -- WHERE 4904 02:55:19,076 --> 02:55:23,447 THE ALZHEIMER'S RESEARCH OR ANY 4905 02:55:23,447 --> 02:55:24,215 RESEARCH SPECIFICALLY, WHAT HAVE 4906 02:55:24,215 --> 02:55:25,416 YOU DONE TO MAKE SURE THAT WE'RE 4907 02:55:25,416 --> 02:55:26,951 NOT EXCLUDING CERTAIN PEOPLE 4908 02:55:26,951 --> 02:55:27,351 WITH DISABILITIES? 4909 02:55:27,351 --> 02:55:28,052 AND THE EXAMPLE THAT I'M GOING 4910 02:55:28,052 --> 02:55:32,957 TO GIVE IS ONE THAT I HAVE BEEN 4911 02:55:32,957 --> 02:55:34,859 HARPING ON FOR YEARS NOW, AND 4912 02:55:34,859 --> 02:55:36,594 THAT'S INCLUSION OF PEOPLE WITH 4913 02:55:36,594 --> 02:55:37,294 INTELLECTUAL DISABILITIES IN 4914 02:55:37,294 --> 02:55:38,362 RESEARCH STUDIES BECAUSE LET'S 4915 02:55:38,362 --> 02:55:39,797 FACE IT, YOU TALK ABOUT IRBs 4916 02:55:39,797 --> 02:55:41,198 AND THE PROBLEMS THEY HAVE, 4917 02:55:41,198 --> 02:55:42,199 GETTING THROUGH THE PROTOCOLS TO 4918 02:55:42,199 --> 02:55:43,734 MAKE SURE THAT YOU'RE DOING 4919 02:55:43,734 --> 02:55:45,369 PROXY CONSENT AND ALL THAT KIND 4920 02:55:45,369 --> 02:55:46,570 OF STUFF CAN BE A PAIN IN THE 4921 02:55:46,570 --> 02:55:47,238 NECK BUT IT'S SOMETHING THAT I 4922 02:55:47,238 --> 02:55:49,206 THINK THAT GROUP GETS LEFT OUT 4923 02:55:49,206 --> 02:55:51,842 OF SO MUCH RESEARCH, SO QUESTION 4924 02:55:51,842 --> 02:55:56,280 AS TO WHAT YOUR PARTICULAR 4925 02:55:56,280 --> 02:55:57,081 UNIVERSITIES HAVE DONE TO MAKE 4926 02:55:57,081 --> 02:55:58,683 SURE THAT THAT GETS DONE, AND 4927 02:55:58,683 --> 02:55:59,517 THEN I ALSO HAVE ANOTHER 4928 02:55:59,517 --> 02:56:00,518 QUESTION TOO. 4929 02:56:00,518 --> 02:56:02,787 >> SO JOY, MAY I GO FIRST ON 4930 02:56:02,787 --> 02:56:02,987 THIS? 4931 02:56:02,987 --> 02:56:03,654 >> SURE. 4932 02:56:03,654 --> 02:56:10,194 >> SO MY COLLEAGUE, FACULTY HERE 4933 02:56:10,194 --> 02:56:11,862 IN THE PROGRAM IN OCCUPATIONAL 4934 02:56:11,862 --> 02:56:14,165 THERAPY HAS TWO DIFFERENT PCORI 4935 02:56:14,165 --> 02:56:16,133 GRANTS TO WORK WITH INDIVIDUALS 4936 02:56:16,133 --> 02:56:17,034 WITH INTELLECTUAL DISABILITIES 4937 02:56:17,034 --> 02:56:18,202 TO ENSURE THAT THEY ARE INCLUDED 4938 02:56:18,202 --> 02:56:20,404 IN RESEARCH, AND I WAS THE SITE 4939 02:56:20,404 --> 02:56:22,473 P.I. FOR THE ALL-OF-US PRECISION 4940 02:56:22,473 --> 02:56:23,574 MEDICINE INITIATIVE, AND THEY 4941 02:56:23,574 --> 02:56:25,776 REALLY GAVE ME HOLY HELL THAT WE 4942 02:56:25,776 --> 02:56:26,977 WERE NOT INCLUDING PEOPLE WITH 4943 02:56:26,977 --> 02:56:29,080 INTELLECTUAL DISABILITIES. 4944 02:56:29,080 --> 02:56:37,054 AND DEVELOPED ACTUALLY A PROCESS 4945 02:56:37,054 --> 02:56:38,589 FOR ENGAGEMENT AND INCLUSION IN 4946 02:56:38,589 --> 02:56:39,890 RESPONSE TO THEIR VERY REAL 4947 02:56:39,890 --> 02:56:42,860 COMPLAINTS THAT THIS NATIONAL 4948 02:56:42,860 --> 02:56:44,261 INCLUSIVE RESEARCH PROGRAM WAS 4949 02:56:44,261 --> 02:56:45,029 ACTUALLY EXCLUDING INDIVIDUALS 4950 02:56:45,029 --> 02:56:47,565 WHO MIGHT BENEFIT FROM THE 4951 02:56:47,565 --> 02:56:47,998 RESEARCH OVERALL. 4952 02:56:47,998 --> 02:56:53,237 SO I'VE HAD GOOD COACHING FROM 4953 02:56:53,237 --> 02:56:55,106 CARLA'S -- AS PART OF HER PCORI 4954 02:56:55,106 --> 02:56:56,640 SHE WAS WORKING WITH SPECIAL 4955 02:56:56,640 --> 02:56:57,408 OLYMPICS INTERNATIONAL AND THEY 4956 02:56:57,408 --> 02:56:58,843 ACTUALLY DEVELOPED A TOOLKIT FOR 4957 02:56:58,843 --> 02:56:59,910 INVESTIGATORS FOR APPROPRIATE 4958 02:56:59,910 --> 02:57:01,779 INCLUSION OF INDIVIDUALS WITH 4959 02:57:01,779 --> 02:57:03,214 INTELLECTUAL DISABILITIES, 4960 02:57:03,214 --> 02:57:05,816 INCLUDING IN THE PCORI DB -- IN 4961 02:57:05,816 --> 02:57:08,219 SORT OF THE PCORI APPROACH AND 4962 02:57:08,219 --> 02:57:09,220 COINVESTIGATORS, SO I HAVE 4963 02:57:09,220 --> 02:57:10,955 LEARNED QUITE A BIT, AND MY NEXT 4964 02:57:10,955 --> 02:57:12,723 PROJECT ACTUALLY AS WE BEGIN TO 4965 02:57:12,723 --> 02:57:15,359 MOVE INTO THE COMMUNITY FOR LONG 4966 02:57:15,359 --> 02:57:16,127 COVID, THINKING ABOUT 4967 02:57:16,127 --> 02:57:17,661 INTERVENTIONS, ACTUALLY WE'LL 4968 02:57:17,661 --> 02:57:19,096 HAVE REPRESENTATION FROM THAT 4969 02:57:19,096 --> 02:57:19,964 GROUP. 4970 02:57:19,964 --> 02:57:23,601 FROM THE VERY BEGINNING. 4971 02:57:23,601 --> 02:57:25,035 >> AND I'D JUMP IN WITH THAT AS 4972 02:57:25,035 --> 02:57:26,237 WELL TOO. 4973 02:57:26,237 --> 02:57:27,505 SO FIRST OF ALL, I COMPLETELY 4974 02:57:27,505 --> 02:57:31,509 AGREE WITH YOU ON THE FIRST 4975 02:57:31,509 --> 02:57:32,510 COMMENTS ABOUT IDENTITY, THAT 4976 02:57:32,510 --> 02:57:33,911 PEOPLE WITH DISABILITIES ARE 4977 02:57:33,911 --> 02:57:35,546 COMING, A, DIVERSE DISABILITIES 4978 02:57:35,546 --> 02:57:39,016 THAT USUALLY ARE HAPPENING 4979 02:57:39,016 --> 02:57:39,884 TOGETHER. 4980 02:57:39,884 --> 02:57:41,852 IT'S NOT LIKE THEY JUST HAVE ONE 4981 02:57:41,852 --> 02:57:42,887 DIAGNOSIS AND THAT'S IT EVEN 4982 02:57:42,887 --> 02:57:44,688 THOUGH WE TRY TO DO THAT IN NIH 4983 02:57:44,688 --> 02:57:45,189 RESEARCH, RIGHT? 4984 02:57:45,189 --> 02:57:46,157 THEY'RE EXPERIENCING MULTIPLE 4985 02:57:46,157 --> 02:57:47,291 CONDITIONS AND DISABILITIES AT 4986 02:57:47,291 --> 02:57:50,094 THE SAME TIME. 4987 02:57:50,094 --> 02:57:52,096 BUT ALSO THE UNDERREPRESENTED 4988 02:57:52,096 --> 02:57:52,830 GROUPS AND INTERSECTIONS THEY'VE 4989 02:57:52,830 --> 02:57:53,130 GOT. 4990 02:57:53,130 --> 02:57:55,299 SO WHETHER IT'S BY RACE OR 4991 02:57:55,299 --> 02:57:57,835 ETHNICITY, BY SEX, BY GENDER 4992 02:57:57,835 --> 02:58:00,237 ORIENTATION, BY OTHER GROUPS. 4993 02:58:00,237 --> 02:58:01,672 ARE INCREDIBLY IMPORTANT, AND I 4994 02:58:01,672 --> 02:58:03,974 THINK, AGAIN, UNLESS YOU'RE 4995 02:58:03,974 --> 02:58:05,276 ENGAGING WITH COMMUNITIES THAT 4996 02:58:05,276 --> 02:58:07,178 HAVE OUTREACH INTO THOSE GROUPS, 4997 02:58:07,178 --> 02:58:09,013 YOU'RYOU'RE GOING TO MISS THEM. 4998 02:58:09,013 --> 02:58:11,182 SO I DO THINK THAT'S WHY IT'S SO 4999 02:58:11,182 --> 02:58:13,551 IMPORTANT WITH, SAY, CENTERS FOR 5000 02:58:13,551 --> 02:58:14,585 INDEPENDENT LIVING OR OTHER 5001 02:58:14,585 --> 02:58:17,454 GROUPS THAT WE'VE WORKED WITH, 5002 02:58:17,454 --> 02:58:18,722 THAT WE'RE HAVING REPRESENTATION 5003 02:58:18,722 --> 02:58:20,491 IN THAT AND THAT THEY'RE 5004 02:58:20,491 --> 02:58:22,827 INVOLVED IN OUTREACHING TO THOSE 5005 02:58:22,827 --> 02:58:23,928 GROUPS AND BRINGING THEM TO THE 5006 02:58:23,928 --> 02:58:24,795 TABLE, RIGHT? 5007 02:58:24,795 --> 02:58:26,530 FOR PEOPLE WITH INTELLECTUAL AND 5008 02:58:26,530 --> 02:58:27,431 DEVELOPMENTAL DISABILITIES, 5009 02:58:27,431 --> 02:58:28,399 WE'VE DONE A LOT WITH -- WE HAD 5010 02:58:28,399 --> 02:58:33,103 THE NIDILRR CENTER GRANT ON 5011 02:58:33,103 --> 02:58:34,538 WORKING WITH PEOPLE WITH 5012 02:58:34,538 --> 02:58:35,840 INTELLECTUAL AND DEVELOPMENTAL 5013 02:58:35,840 --> 02:58:36,707 DISABILITIES ON COMMUNITY LIVING 5014 02:58:36,707 --> 02:58:37,908 AND COMMUNITY PARTICIPATION, AND 5015 02:58:37,908 --> 02:58:40,244 THAT INCLUDED A REALLY STRONG 5016 02:58:40,244 --> 02:58:43,280 NETWORK OF IDD GROUPS, INCLUDING 5017 02:58:43,280 --> 02:58:44,915 PEOPLE FIRST, SELF-ADVOCATES 5018 02:58:44,915 --> 02:58:48,319 BECOMING EMPOWERED, GROUPS OUT 5019 02:58:48,319 --> 02:58:49,954 OF ARC AND OTHER NATIONAL 5020 02:58:49,954 --> 02:58:51,655 ORGANIZATIONS, BUT DEFINITELY 5021 02:58:51,655 --> 02:58:53,557 SHALL WE SAY ADVOCACY GROUPS 5022 02:58:53,557 --> 02:58:57,194 THAT WERE RAN BY PEOPLE WITH IDD 5023 02:58:57,194 --> 02:58:58,529 ABOUT PEOPLE WITH IDD. 5024 02:58:58,529 --> 02:59:00,497 AND THEY'RE THE PEOPLE WHO 5025 02:59:00,497 --> 02:59:01,565 CONSULTED ON EVERYTHING THAT WE 5026 02:59:01,565 --> 02:59:02,132 DID. 5027 02:59:02,132 --> 02:59:03,834 THEY WERE PART OF THE RESEARCH 5028 02:59:03,834 --> 02:59:06,070 TEAM AND PAID MEMBERS OF THAT 5029 02:59:06,070 --> 02:59:08,172 RESEARCH TEAM. 5030 02:59:08,172 --> 02:59:10,207 THAT THEY TALK TO US ABOUT HOW 5031 02:59:10,207 --> 02:59:12,009 DO YOU DO CONSENT AND ASCENT. 5032 02:59:12,009 --> 02:59:13,477 THEY ACTUALLY WORKED WITH OUR I 5033 02:59:13,477 --> 02:59:15,713 RP B AT UIC TO DEVELOP NOT ONLY 5034 02:59:15,713 --> 02:59:18,716 A COMMUNITY-BASED VERSION OF 5035 02:59:18,716 --> 02:59:20,484 IRB, BUT A VERSION OF IT THAT 5036 02:59:20,484 --> 02:59:22,419 HAD MUCH MORE VISUALS AND 5037 02:59:22,419 --> 02:59:24,088 PICTURES AND OTHER THINGS IN IT 5038 02:59:24,088 --> 02:59:25,189 THAT WERE ACCESSIBLE TO PEOPLE 5039 02:59:25,189 --> 02:59:27,491 WITH IDD AS WELL. 5040 02:59:27,491 --> 02:59:29,894 SO EVEN LIKE ATTACKING OUR OWN 5041 02:59:29,894 --> 02:59:31,528 UNIVERSITY TO SAY YOU NEED TO 5042 02:59:31,528 --> 02:59:34,498 CHANGE YOUR PRACTICES FOR 5043 02:59:34,498 --> 02:59:35,065 INCLUSION. 5044 02:59:35,065 --> 02:59:37,067 IT TO THE US THAT NEEDS TO 5045 02:59:37,067 --> 02:59:37,301 CHANGE. 5046 02:59:37,301 --> 02:59:39,203 SO I WOULD AGREE WITH YOU THAT 5047 02:59:39,203 --> 02:59:41,705 THAT'S A REALLY IMPORTANT GROUP. 5048 02:59:41,705 --> 02:59:43,908 BUT I WOULD ALSO SAY THAT WE'RE 5049 02:59:43,908 --> 02:59:45,242 ALSO -- THERE'S A LOT OF OTHER 5050 02:59:45,242 --> 02:59:46,677 PEOPLE WITH DISABILITIES 5051 02:59:46,677 --> 02:59:49,513 EXPERIENCING COGNITIVE 5052 02:59:49,513 --> 02:59:51,348 DISABILITIES TOO, THAT ARE OFTEN 5053 02:59:51,348 --> 02:59:54,118 EXCLUDED FROM RESEARCH BECAUSE 5054 02:59:54,118 --> 02:59:55,753 OUR VERY ASSESSMENTS OR 5055 02:59:55,753 --> 02:59:57,087 INCLUSION AND EXCLUSION CRITERIA 5056 02:59:57,087 --> 02:59:58,589 ALREADY HAVE PREEMPTED THEM FROM 5057 02:59:58,589 --> 03:00:02,559 BEING ABLE TO DO IT. 5058 03:00:02,559 --> 03:00:03,594 SO PART OF WHAT WE'RE TRYING TO 5059 03:00:03,594 --> 03:00:05,529 DO IS REVALIDATE THOSE 5060 03:00:05,529 --> 03:00:06,664 ASSESSMENT TOOLS SO INDEED THEY 5061 03:00:06,664 --> 03:00:08,832 DON'T SCREEN OUT PEOPLE WITH 5062 03:00:08,832 --> 03:00:09,700 DISABILITIES, AND THEY'RE VALID 5063 03:00:09,700 --> 03:00:11,101 FOR PEOPLE WITH DISABILITIES TO 5064 03:00:11,101 --> 03:00:14,171 BE ABLE TO PARTICIPATE, AND 5065 03:00:14,171 --> 03:00:16,440 REALLY QUESTIONING OUR 5066 03:00:16,440 --> 03:00:20,044 INCLUSION/EXCLUSION CRITERIA ON 5067 03:00:20,044 --> 03:00:21,812 DO YOU REALLY HAVE A GOOD REASON 5068 03:00:21,812 --> 03:00:25,716 FOR WHY THESE INDIVIDUALS ARE 5069 03:00:25,716 --> 03:00:27,251 CONSIDERED NOT TO BE ABLE TO DO 5070 03:00:27,251 --> 03:00:27,584 THIS. 5071 03:00:27,584 --> 03:00:29,019 OFTEN WHEN THEY COME IN TO THE 5072 03:00:29,019 --> 03:00:30,220 RESEARCH THAT WE'RE DOING, WE 5073 03:00:30,220 --> 03:00:34,024 GET, YOU KNOW, FROM OUR IRB 5074 03:00:34,024 --> 03:00:35,492 SAYING THERE'S NO WAY THEY'RE 5075 03:00:35,492 --> 03:00:36,593 GOING TO BE ABLE TO DO A SELF 5076 03:00:36,593 --> 03:00:37,594 MANAGEMENT PROGRAM IN THE 5077 03:00:37,594 --> 03:00:39,663 COMMUNITY, THEY'RE TOO RISKY, 5078 03:00:39,663 --> 03:00:40,931 AND LIKE WE BRING THEM IN AND 5079 03:00:40,931 --> 03:00:43,834 THEY DO IT. 5080 03:00:43,834 --> 03:00:44,902 WITH THE RIGHT MENTORING AND 5081 03:00:44,902 --> 03:00:46,236 EVERYTHING ELSE, THE RIGHT 5082 03:00:46,236 --> 03:00:47,571 SUPPORTS, IT HAPPENS AND SO 5083 03:00:47,571 --> 03:00:48,639 WE'RE OFTEN EDUCATING OUR OWN 5084 03:00:48,639 --> 03:00:51,508 UNIVERSITY AS MUCH AS WE ARE OUR 5085 03:00:51,508 --> 03:00:52,710 OWN SELVES ON THIS ONE. 5086 03:00:52,710 --> 03:00:54,678 >> SO I'D LIKE TO JUST JUMP IN 5087 03:00:54,678 --> 03:00:58,515 BRIEFLY AND SAY THAT IN THE NIH 5088 03:00:58,515 --> 03:01:00,718 REVIEW, THERE'S INCLUSION OF 5089 03:01:00,718 --> 03:01:01,318 UNDERREPRESENTED GROUPS ACROSS 5090 03:01:01,318 --> 03:01:02,353 THE LIFESPAN THAT COMES IN AFTER 5091 03:01:02,353 --> 03:01:03,687 THE SCIENTIFIC REVIEW, AND 5092 03:01:03,687 --> 03:01:07,224 THAT'S A REALLY SIGNIFICANTLY 5093 03:01:07,224 --> 03:01:08,092 UNDERUTILIZED TOOL. 5094 03:01:08,092 --> 03:01:10,160 A PERSON WHO UNDERSTANDS 5095 03:01:10,160 --> 03:01:12,663 ENGAGEMENT RECRUITMENT AND 5096 03:01:12,663 --> 03:01:14,231 BARRIERS TO -- UNREASONABLE 5097 03:01:14,231 --> 03:01:15,099 BARRIERS TO RECRUITMENT CAN 5098 03:01:15,099 --> 03:01:16,633 ACTUALLY STOP THE FUNDING AND 5099 03:01:16,633 --> 03:01:20,137 TELL THE INVESTIGATOR 5100 03:01:20,137 --> 03:01:23,741 DEMONSTRATES THE CAPACITY TO 5101 03:01:23,741 --> 03:01:25,275 FULLY ENGAGE IN COMMUNITIES OF 5102 03:01:25,275 --> 03:01:26,510 INTEREST, INCLUDING THE BUDGET. 5103 03:01:26,510 --> 03:01:28,145 IN OTHER WORDS, AND I FIND THAT 5104 03:01:28,145 --> 03:01:30,114 ON STUDY SECTIONS, MOST PEOPLE 5105 03:01:30,114 --> 03:01:31,315 GLOSS OVER THAT AND THEY JUST 5106 03:01:31,315 --> 03:01:32,850 LOOK AT THE CUT AND PASTE 5107 03:01:32,850 --> 03:01:34,785 INFORMATION FROM AN IRB PROTOCOL 5108 03:01:34,785 --> 03:01:36,720 AS OPPOSED TO A BUDGET FOR 5109 03:01:36,720 --> 03:01:39,023 ENGAGEMENT, A BUDGET FOR 5110 03:01:39,023 --> 03:01:41,091 INCLUSION, ACCOMMODATIONS FOR 5111 03:01:41,091 --> 03:01:43,293 PEOPLE WITH DIFFERENT KINDS OF 5112 03:01:43,293 --> 03:01:45,262 IMPAIRMENTS, AND SO I WANT TO 5113 03:01:45,262 --> 03:01:46,463 ENCOURAGE PEOPLE ON STUDY 5114 03:01:46,463 --> 03:01:49,099 SECTIONS TO MAKE FULL USE OF 5115 03:01:49,099 --> 03:01:51,135 THAT REQUIRED REVIEW SECTION, 5116 03:01:51,135 --> 03:01:53,003 AND I'LL BE QUIET NOW. 5117 03:01:53,003 --> 03:01:54,838 >> BEFORE WE GO TO KATHLEEN FOR 5118 03:01:54,838 --> 03:01:56,340 THE FINAL QUESTION, I JUST WANT 5119 03:01:56,340 --> 03:01:58,142 TO CONGRATULATE YOU TWO FOR -- 5120 03:01:58,142 --> 03:01:59,209 ACTUALLY IT'S GOOD TO SEE JOY 5121 03:01:59,209 --> 03:01:59,977 AGAIN. 5122 03:01:59,977 --> 03:02:01,011 JOY WAS A FORMER BOARD MEMBER 5123 03:02:01,011 --> 03:02:02,179 YEARS AGO. 5124 03:02:02,179 --> 03:02:03,580 SO I APPRECIATE YOU TAKING THIS 5125 03:02:03,580 --> 03:02:06,250 FROM THE REALM OF BEING 5126 03:02:06,250 --> 03:02:07,451 SOMETHING -- IT'S NOT SUCH A 5127 03:02:07,451 --> 03:02:09,319 MATTER OF POLITICAL CORRECTNESS, 5128 03:02:09,319 --> 03:02:11,155 BUT POINTING OUT IT ACTUALLY 5129 03:02:11,155 --> 03:02:12,523 MAKES BETTER STUDIES, MORE 5130 03:02:12,523 --> 03:02:14,491 EFFECTIVE STUDIES, STUDIES THAT 5131 03:02:14,491 --> 03:02:15,893 ARE MORE GENERALIZABLE AND 5132 03:02:15,893 --> 03:02:16,960 PROBABLY HAVE A QUICKER -- YOU 5133 03:02:16,960 --> 03:02:21,832 DON'T HAVE TO WAIT 17 YEARS TO 5134 03:02:21,832 --> 03:02:22,933 GET SOMETHING IN FOUR. 5135 03:02:22,933 --> 03:02:24,134 SO I'M GLAD YOU BRING THAT 5136 03:02:24,134 --> 03:02:25,769 MESSAGE OUT TO REVIEWERS, YOU 5137 03:02:25,769 --> 03:02:27,137 IT'S NOT JUST NIH POLICY BUT 5138 03:02:27,137 --> 03:02:28,605 IT'S GOING TO MAKE YOUR STUDY 5139 03:02:28,605 --> 03:02:32,376 BETDER BETTER AND WE HAVE TO GEE 5140 03:02:32,376 --> 03:02:33,243 WORD OUT. 5141 03:02:33,243 --> 03:02:35,245 SO KATHLEEN, I'LL GIVE YOU THE 5142 03:02:35,245 --> 03:02:35,612 FINAL QUESTION. 5143 03:02:35,612 --> 03:02:38,882 >> HI, DOROTHY I'M NOT SURE IF 5144 03:02:38,882 --> 03:02:41,185 YOU REMEMBER ME BUT IT'S BEEN A 5145 03:02:41,185 --> 03:02:42,386 LONG TIME. 5146 03:02:42,386 --> 03:02:43,120 TREERYLY INTERESTING WORK, THANK 5147 03:02:43,120 --> 03:02:44,021 YOU BOTH FOR PRESENTING THIS. 5148 03:02:44,021 --> 03:02:46,557 SO I WANTED TO SAY TWO THINGS. 5149 03:02:46,557 --> 03:02:48,092 ONE, AT THE NATIONAL MS SOCIETY, 5150 03:02:48,092 --> 03:02:49,827 THEY'VE CREATED A COMMUNITY 5151 03:02:49,827 --> 03:02:51,929 REVIEW OF MS RESEARCH COMMITTEE 5152 03:02:51,929 --> 03:02:54,465 WITH THE IDEA THAT IT'S A 5153 03:02:54,465 --> 03:02:55,566 COMMITTEE COMPLETELY MADE UP OF 5154 03:02:55,566 --> 03:02:57,201 PEOPLE AFFECTED BY MS, THAT 5155 03:02:57,201 --> 03:02:58,969 INCLUDES CAREGIVERS AND PARENTS, 5156 03:02:58,969 --> 03:03:01,472 BUT NO SCIENTISTS OTHER THAN THE 5157 03:03:01,472 --> 03:03:02,439 SCIENTISTS AT THE SOCIETY THAT 5158 03:03:02,439 --> 03:03:04,007 HELP TO TRANSLATE SOME OF THE 5159 03:03:04,007 --> 03:03:04,208 WORK. 5160 03:03:04,208 --> 03:03:09,413 AND THAT'S WHERE WE'VE HAD A BIG 5161 03:03:09,413 --> 03:03:10,581 STRUGGLE BECAUSE THE SCIENTISTS 5162 03:03:10,581 --> 03:03:12,282 DON'T KNOW HOW TO EXPLAIN THEIR 5163 03:03:12,282 --> 03:03:13,383 WORK IN LAY TERMS AND WE CALL IT 5164 03:03:13,383 --> 03:03:15,786 A PLAIN LANGUAGE DESCRIPTION. 5165 03:03:15,786 --> 03:03:16,820 WE PROVIDE DIRECT COMMENTS BACK 5166 03:03:16,820 --> 03:03:19,756 TO THE SCIENTIST APPLICANTS, AND 5167 03:03:19,756 --> 03:03:21,625 YET MANY OF THEM JUST DON'T 5168 03:03:21,625 --> 03:03:22,926 KNOW -- THEY GO INTO THE JARGON 5169 03:03:22,926 --> 03:03:26,330 SO QUICKLY. 5170 03:03:26,330 --> 03:03:27,764 AND IT'S INTERESTING BECAUSE 5171 03:03:27,764 --> 03:03:31,735 WE'VE HAD TO HAVE WHAT WE 5172 03:03:31,735 --> 03:03:33,704 CREATED WERE OFFICE HOURS, WHICH 5173 03:03:33,704 --> 03:03:35,572 IS ESSENTIALLY A SCIENTIST 5174 03:03:35,572 --> 03:03:36,173 TALKING TO THE COMMITTEE ABOUT 5175 03:03:36,173 --> 03:03:37,541 THEIR QUESTIONS TO SORT OF MAKE 5176 03:03:37,541 --> 03:03:38,976 THE JARGON MAKE SENSE. 5177 03:03:38,976 --> 03:03:40,644 BECAUSE THEY NEED TO KNOW ENOUGH 5178 03:03:40,644 --> 03:03:41,612 ABOUT THE STUDY, EVEN IF IT'S A 5179 03:03:41,612 --> 03:03:43,614 MOUSE STUDY OR A CELLULAR STUDY, 5180 03:03:43,614 --> 03:03:44,915 THEY NEED TO KNOW ENOUGH ABOUT 5181 03:03:44,915 --> 03:03:48,685 TO WEIGH IN ON RELEVANCE TO THE 5182 03:03:48,685 --> 03:03:51,355 MS COMMUNITY, THE ENTHUSIASM. 5183 03:03:51,355 --> 03:03:52,489 THEY WANT PATIENT-CENTERED 5184 03:03:52,489 --> 03:03:54,057 CONCERNS FOR THAT KIND OF WORK, 5185 03:03:54,057 --> 03:03:56,627 BUT WE THINK AS A SOCIETY THAT 5186 03:03:56,627 --> 03:03:58,729 THAT CONTRIBUTION IS STILL 5187 03:03:58,729 --> 03:03:59,496 REALLY IMPORTANT THAT THE 5188 03:03:59,496 --> 03:04:00,697 COMMUNITY KNOWS ABOUT THIS. 5189 03:04:00,697 --> 03:04:02,833 SO I JUST AM WONDERING IF YOU 5190 03:04:02,833 --> 03:04:04,568 HAVE ANY ADVICE ON HOW TO TEACH 5191 03:04:04,568 --> 03:04:06,637 PEOPLE HOW TO WRITE PLAIN 5192 03:04:06,637 --> 03:04:07,738 LANGUAGE ABOUT THEIR WORK AND 5193 03:04:07,738 --> 03:04:11,175 HOW WE CAN IMPROVE THAT. 5194 03:04:11,175 --> 03:04:12,809 >> KATHLEEN, THAT'S A BIG 5195 03:04:12,809 --> 03:04:16,613 CHALLENGE THAT WE FACE. 5196 03:04:16,613 --> 03:04:17,814 WE ACTUALLY HAVE A DEPARTMENT 5197 03:04:17,814 --> 03:04:21,084 HERE AT UW IN SCIENTIFIC 5198 03:04:21,084 --> 03:04:21,618 COMMUNICATION AND WE HAVE 5199 03:04:21,618 --> 03:04:23,120 STUDENT INTERNS THAT REVIEW A 5200 03:04:23,120 --> 03:04:24,955 LOT OF OUR PUBLICATIONS AND OUR 5201 03:04:24,955 --> 03:04:26,557 MATERIALS BEFORE WE TAKE THEM TO 5202 03:04:26,557 --> 03:04:27,090 THE COMMUNITY, BUT THERE'S 5203 03:04:27,090 --> 03:04:29,927 NOTHING LIKE A COMMUNITY GROUP 5204 03:04:29,927 --> 03:04:30,894 TELLING A SCIENTIST THAT THE 5205 03:04:30,894 --> 03:04:32,829 WORK IS PROBABLY REALLY NICE BUT 5206 03:04:32,829 --> 03:04:33,997 NONE OF IT MAKES SENSE AND WHY 5207 03:04:33,997 --> 03:04:35,866 CAN'T THEY -- IF THEY TAKE THE 5208 03:04:35,866 --> 03:04:37,401 MONEY, WHY CAN'T THEY EXPLAIN 5209 03:04:37,401 --> 03:04:38,502 IT? 5210 03:04:38,502 --> 03:04:39,503 I THINK YOU SOMETIMES NEED TO 5211 03:04:39,503 --> 03:04:41,338 HIT PEOPLE BETWEEN THE EYES 5212 03:04:41,338 --> 03:04:42,339 SAYING, OUR ORGANIZATION IS 5213 03:04:42,339 --> 03:04:43,874 FUNDING YOUR WORK, BUT YOU CAN'T 5214 03:04:43,874 --> 03:04:45,876 EXPLAIN WHAT YOU'RE DOING TO US? 5215 03:04:45,876 --> 03:04:47,511 I DON'T THINK WE SHOULD GIVE YOU 5216 03:04:47,511 --> 03:04:48,312 ANY MORE MONEY UNTIL YOU FIGURE 5217 03:04:48,312 --> 03:04:51,982 THAT OUT. 5218 03:04:51,982 --> 03:04:53,483 >> I'VE FOUND THE COMMUNITY TO 5219 03:04:53,483 --> 03:04:55,519 BE EXTREMELY CLEVER, SO ONE 5220 03:04:55,519 --> 03:04:58,855 PERSON ON OUR COMMITTEE BROUGHT 5221 03:04:58,855 --> 03:05:00,624 UP IF THEY CAN'T EXPLAIN TO ME, 5222 03:05:00,624 --> 03:05:02,492 HOW ARE THEY GOING TO EXPLAIN TO 5223 03:05:02,492 --> 03:05:03,393 AN IRB PANEL? 5224 03:05:03,393 --> 03:05:05,495 AND I WAS LIKE, YOU'RE RIGHT, I 5225 03:05:05,495 --> 03:05:06,663 MEAN -- BUT THE REALITY IS, AT 5226 03:05:06,663 --> 03:05:09,066 LEAST WHERE I WAS AT HOPKINS, 5227 03:05:09,066 --> 03:05:10,634 THE IRB PANEL WERE SCIENTISTS, 5228 03:05:10,634 --> 03:05:13,170 SO THEN THEY'RE STILL NOT REALLY 5229 03:05:13,170 --> 03:05:14,504 PUTTING IT INTO LAY LANGUAGE. 5230 03:05:14,504 --> 03:05:16,707 SO IT JUST SEEMS LIKE THIS GAP, 5231 03:05:16,707 --> 03:05:19,009 TEACHING US HOW TO WRITE IN 5232 03:05:19,009 --> 03:05:19,910 PLAIN TERMS. 5233 03:05:19,910 --> 03:05:22,512 >> SO OUR CTSA, WHICH YOU KNOW 5234 03:05:22,512 --> 03:05:26,550 FUNNELS A LOT OF NIH MONEY INTO 5235 03:05:26,550 --> 03:05:28,785 PILOT AND DEMONSTRATION PROJECTS 5236 03:05:28,785 --> 03:05:29,653 HAS A COMMUNITY REVIEW PANEL FOR 5237 03:05:29,653 --> 03:05:30,988 ALL OF THE FUNDED PROJECTS, AND 5238 03:05:30,988 --> 03:05:32,589 THERE HAS TO BE A LAY SUMMARY 5239 03:05:32,589 --> 03:05:33,724 THAT MAKES SENSE, AND THEY TURN 5240 03:05:33,724 --> 03:05:34,925 DOWN A LOT OF PROJECTS. 5241 03:05:34,925 --> 03:05:37,461 I HAVE TO SAY THE HIT RATE IS 5242 03:05:37,461 --> 03:05:38,795 ABOUT 30% AFTER -- SO THINGS 5243 03:05:38,795 --> 03:05:41,632 THAT HAVE GONE THROUGH THE 5244 03:05:41,632 --> 03:05:42,933 SCIENTIFIC REVIEW, ONLY ABOUT 5245 03:05:42,933 --> 03:05:44,301 30% OF THEM MAKE IT THROUGH THE 5246 03:05:44,301 --> 03:05:45,736 LAY REVIEW AND THEY DON'T GET 5247 03:05:45,736 --> 03:05:46,870 FUNDED UNTIL THEY SATISFY THE 5248 03:05:46,870 --> 03:05:47,571 LAY REVIEWERS. 5249 03:05:47,571 --> 03:05:49,106 THAT'S BEEN INSTITUTIONALIZED 5250 03:05:49,106 --> 03:05:50,674 HERE, AND IT'S MADE A 5251 03:05:50,674 --> 03:05:51,541 DIFFERENCE, BUT SO PEOPLE GET 5252 03:05:51,541 --> 03:05:52,743 THROUGH THE PROPOSAL PROCESS BUT 5253 03:05:52,743 --> 03:05:56,546 THEN THEY WRITE THEIR PAPERS, 5254 03:05:56,546 --> 03:05:57,848 AND IT RIGHT BACK TO THE 5255 03:05:57,848 --> 03:05:59,149 SCIENTIFIC LANGUAGE AND JARGON, 5256 03:05:59,149 --> 03:06:01,918 SO I THINK IT'S A DOUBLE EDGE 5257 03:06:01,918 --> 03:06:02,319 PROBLEM ACTUALLY. 5258 03:06:02,319 --> 03:06:03,820 >> AGREED, AGREED. 5259 03:06:03,820 --> 03:06:04,888 SO IF THERE'S ANYTHING YOU CAN 5260 03:06:04,888 --> 03:06:08,058 DO TO HELP TEACH SCIENTISTS AS 5261 03:06:08,058 --> 03:06:09,493 THEY COME UP THROUGH THE RANKS, 5262 03:06:09,493 --> 03:06:12,462 BUT YOU NEED TO BE ABLE TO SPEAK 5263 03:06:12,462 --> 03:06:14,097 IN SCIENCE TERMS BUT ALSO 5264 03:06:14,097 --> 03:06:14,965 TRANSLATE THAT. 5265 03:06:14,965 --> 03:06:16,566 BUT THANK YOU SO MUCH, THIS WORK 5266 03:06:16,566 --> 03:06:17,768 IS REALLY GREAT AND REALLY 5267 03:06:17,768 --> 03:06:20,971 IMPORTANT. 5268 03:06:20,971 --> 03:06:23,840 >> SHE WAS MY COACH EARLY ON, 5269 03:06:23,840 --> 03:06:24,041 SO -- 5270 03:06:24,041 --> 03:06:26,543 >> I'D ADD TO IT TOO, EXAMPLES, 5271 03:06:26,543 --> 03:06:27,444 EXAMPLES, EXAMPLES, RIGHT? 5272 03:06:27,444 --> 03:06:29,813 YOU KNOW, KIND OF THING. 5273 03:06:29,813 --> 03:06:32,549 SO I'M GOING TO USE THE IDD 5274 03:06:32,549 --> 03:06:33,750 COMMUNITY AGAIN AS A REALLY GOOD 5275 03:06:33,750 --> 03:06:34,284 EXAMPLE. 5276 03:06:34,284 --> 03:06:35,519 THERE ARE SEVERAL JOURNALS IN 5277 03:06:35,519 --> 03:06:38,388 THE IDD COMMUNITY THAT ACTUALLY 5278 03:06:38,388 --> 03:06:41,091 FORCE THE RESEARCH TO GIVE A 5279 03:06:41,091 --> 03:06:43,327 PLAIN LANGUAGE SUMMARY AND 5280 03:06:43,327 --> 03:06:44,528 THEY'RE IN THE JOURNAL, LIKE 5281 03:06:44,528 --> 03:06:46,930 THEY'RE PUBLISHED. 5282 03:06:46,930 --> 03:06:50,534 I KNOW EVEN IN ACRM, REHAB 5283 03:06:50,534 --> 03:06:52,569 MADISON HAS BEEN DOING A WHOLE 5284 03:06:52,569 --> 03:06:56,940 SERIES UNDER THIS AS WELL. 5285 03:06:56,940 --> 03:06:58,475 TO ACTUALLY GET IT IN PLAIN 5286 03:06:58,475 --> 03:07:00,143 LANGUAGE, WHATEVER KIND OF -- 5287 03:07:00,143 --> 03:07:00,811 HOWEVER YOU'RE CALLING IT, 5288 03:07:00,811 --> 03:07:04,214 RIGHT, ACCESSIBLE LANGUAGE, AND 5289 03:07:04,214 --> 03:07:06,983 ARE DOING LOTS OF EXAMPLES OF 5290 03:07:06,983 --> 03:07:07,951 HOW TO DO IT, RIGHT? 5291 03:07:07,951 --> 03:07:10,253 SO I THINK THAT'S REALLY 5292 03:07:10,253 --> 03:07:11,355 IMPORTANT FOR US TO DO IT. 5293 03:07:11,355 --> 03:07:14,624 AND THEN THAT MEANS OUR 5294 03:07:14,624 --> 03:07:16,093 PROFESSIONAL ORGANIZATIONS, 5295 03:07:16,093 --> 03:07:17,627 THOUGH, TOO NEED TO BE GIVING 5296 03:07:17,627 --> 03:07:19,062 THOSE, THOSE EXAMPLES AND 5297 03:07:19,062 --> 03:07:20,697 WORKSHOPS ON HOW TO BE DOING IT, 5298 03:07:20,697 --> 03:07:21,131 RIGHT? 5299 03:07:21,131 --> 03:07:23,200 IF THEY WANT TO HAPPEN, THE WAY 5300 03:07:23,200 --> 03:07:25,702 YOU LEARN IT IS TO LEARN IT FROM 5301 03:07:25,702 --> 03:07:28,739 EXAMPLES THAT WERE DONE WITH THE 5302 03:07:28,739 --> 03:07:29,506 COMMUNITY. 5303 03:07:29,506 --> 03:07:31,475 AND I'D ALSO SAY, YOU KNOW, 5304 03:07:31,475 --> 03:07:33,443 AGAIN, RESOURCES, WE'VE BEEN 5305 03:07:33,443 --> 03:07:34,845 DOING IT MORE LIKE CAN YOU PUT 5306 03:07:34,845 --> 03:07:37,481 IN RESOURCES TO DO COGNITIVE 5307 03:07:37,481 --> 03:07:38,682 INTERVIEWING WITH COMMUNITY 5308 03:07:38,682 --> 03:07:40,217 MEMBERS AT THE END, NOT JUST AT 5309 03:07:40,217 --> 03:07:41,885 THE BEGINNING, BUT WHILE YOU'RE 5310 03:07:41,885 --> 03:07:43,220 TRYING TO GET YOUR RESULTS 5311 03:07:43,220 --> 03:07:43,420 OUT -- 5312 03:07:43,420 --> 03:07:44,554 >> I'M SORRY -- 5313 03:07:44,554 --> 03:07:45,722 >> TO TALK IT THROUGH. 5314 03:07:45,722 --> 03:07:47,724 >> I'M SORRY TO CUT THIS OFF BUT 5315 03:07:47,724 --> 03:07:48,825 WE HAVE PEOPLE WHO HAVE PLANES 5316 03:07:48,825 --> 03:07:52,095 TO CATCH. 5317 03:07:52,095 --> 03:07:53,930 THIS HAS BEEN FABULOUS. 5318 03:07:53,930 --> 03:08:01,338 SO I'M GOING TO -- 30 SECONDS. 5319 03:08:01,338 --> 03:08:03,206 >> I'LL MAKE THIS REAL QUICK AND 5320 03:08:03,206 --> 03:08:04,841 I'LL MAKE IT MORE A STATEMENT 5321 03:08:04,841 --> 03:08:05,308 THAN A QUESTION. 5322 03:08:05,308 --> 03:08:06,643 FIRST OF ALL DR. EDWARDS, I 5323 03:08:06,643 --> 03:08:07,411 APPRECIATE WHAT YOU SAID ABOUT 5324 03:08:07,411 --> 03:08:08,979 ALL OF THIS BECAUSE WE'RE FUNDED 5325 03:08:08,979 --> 03:08:09,713 ON THAT PROJECT AND WE'VE BEEN 5326 03:08:09,713 --> 03:08:10,614 TRYING TO MAKE THAT CHANGE AS 5327 03:08:10,614 --> 03:08:11,815 WELL. 5328 03:08:11,815 --> 03:08:13,950 AND -- BUT REALLY THE THING WE 5329 03:08:13,950 --> 03:08:14,851 WERE TALKING ABOUT YESTERDAY WAS 5330 03:08:14,851 --> 03:08:16,386 THE WHOLE ISSUE AROUND 5331 03:08:16,386 --> 03:08:17,254 DISABILITY IDENTITY AND WHETHER 5332 03:08:17,254 --> 03:08:19,022 PEOPLE SEE THEMSELVES AS 5333 03:08:19,022 --> 03:08:19,289 DISABLED. 5334 03:08:19,289 --> 03:08:20,323 SO THE OTHER QUESTION I WAS 5335 03:08:20,323 --> 03:08:21,958 GOING TO ASK BUT MAYBE JUST 5336 03:08:21,958 --> 03:08:22,993 SOMETHING TO PONDER AND THINK 5337 03:08:22,993 --> 03:08:24,494 ABOUT IS HOW ARE WE ENGAGING 5338 03:08:24,494 --> 03:08:25,796 THOSE FOLKS THAT MIGHT NOT 5339 03:08:25,796 --> 03:08:26,663 NECESSARILY SEE THEMSELVES IN 5340 03:08:26,663 --> 03:08:28,031 THAT POPULATION GROUP? 5341 03:08:28,031 --> 03:08:29,566 YOU PUT UP THE CDC GRAPHIC 5342 03:08:29,566 --> 03:08:30,634 EARLIER THAT SHOWS ALL THE 5343 03:08:30,634 --> 03:08:31,301 DIFFERENT PEOPLE WITH 5344 03:08:31,301 --> 03:08:31,935 DISABILITIES AND GROUPS. 5345 03:08:31,935 --> 03:08:34,571 A LOT OF THOSE FOLKS DON'T VIEW 5346 03:08:34,571 --> 03:08:35,238 THEMSELVES THAT WAY, AND HOW 5347 03:08:35,238 --> 03:08:36,440 WE'RE MAKING SURE WE'RE STILL 5348 03:08:36,440 --> 03:08:38,108 INCLUDING THOSE. 5349 03:08:38,108 --> 03:08:40,143 >> THANK YOU. 5350 03:08:40,143 --> 03:08:41,545 CAN I STEAL THE MICROPHONE? 5351 03:08:41,545 --> 03:08:43,146 OKAY. 5352 03:08:43,146 --> 03:08:45,982 SO WE HAVE FIVE MINUTES LEFT. 5353 03:08:45,982 --> 03:08:50,620 I HAVE TWO ASKS FOR YOU ALL. 5354 03:08:50,620 --> 03:08:53,690 TOPICS FOR NEXT MEETING IN MAY. 5355 03:08:53,690 --> 03:08:57,060 YOU CAN EITHER EMAIL THEM TO ME 5356 03:08:57,060 --> 03:08:59,830 AND RALPH OR YOU CAN LET ME KNOW 5357 03:08:59,830 --> 03:09:02,866 AS YOU'RE WALKING OUT THE DOOR. 5358 03:09:02,866 --> 03:09:05,068 THE SECOND ASK IS THAT WE WILL 5359 03:09:05,068 --> 03:09:07,471 BE RECRUITING SEVEN NEW MEMBERS 5360 03:09:07,471 --> 03:09:11,475 FOR THIS BOARD, INCLUDING BOTH 5361 03:09:11,475 --> 03:09:12,342 SCIENTIFIC AS WELL AS PUBLIC 5362 03:09:12,342 --> 03:09:13,343 MEMBERS. 5363 03:09:13,343 --> 03:09:15,212 SO IF YOU HAVE IDEAS FOR PEOPLE 5364 03:09:15,212 --> 03:09:19,516 WHO WOULD BE GREAT, WE WOULD 5365 03:09:19,516 --> 03:09:23,220 APPRECIATE THAT. 5366 03:09:23,220 --> 03:09:28,291 AND THEN LAST BUT NOT LEAST, 5367 03:09:28,291 --> 03:09:29,893 THANK YOU, SO WE HAVE OUR 5368 03:09:29,893 --> 03:09:33,964 WONDERFUL SUPPORT TEAM, SHANARD, 5369 03:09:33,964 --> 03:09:36,466 AMY, DEBBIE, WILL HELPING WITH 5370 03:09:36,466 --> 03:09:37,501 I.T., PLUS ALL THE PEOPLE YOU 5371 03:09:37,501 --> 03:09:39,035 DON'T SEE IN THE ROOM WHO ARE 5372 03:09:39,035 --> 03:09:41,137 MAKING SURE THIS IS VIDEOCAST 5373 03:09:41,137 --> 03:09:43,940 AND RECORDED WITH NIH, SO THANK 5374 03:09:43,940 --> 03:09:46,376 YOU TO THEM. 5375 03:09:46,376 --> 03:09:47,777 I HAVE BEEN TOLD THAT THIS WAS 5376 03:09:47,777 --> 03:09:50,413 THE RECORD FOR THE LARGEST FILES 5377 03:09:50,413 --> 03:09:53,383 THAT THEY HAVE EVER DEALT WITH, 5378 03:09:53,383 --> 03:09:58,522 SO CONGRATULATIONS, MICHELLE, 5379 03:09:58,522 --> 03:10:01,992 PEPE, BOB, LARGEST FILE. 5380 03:10:01,992 --> 03:10:04,694 AND THEN ELI IS A, I THOUGHT I 5381 03:10:04,694 --> 03:10:05,695 SAW ELIZA COME IN. 5382 03:10:05,695 --> 03:10:08,532 THANK YOU TO ELIZA, WHO HELPS 5383 03:10:08,532 --> 03:10:09,900 WITH ALL THE LOGISTICS AND 5384 03:10:09,900 --> 03:10:11,101 GETTING YOU GUYS HOME ON TIME. 5385 03:10:11,101 --> 03:10:12,636 >> AND I WANT TO MAKE SURE WE 5386 03:10:12,636 --> 03:10:14,070 GIVE DOROTHY AND JOY A LITTLE 5387 03:10:14,070 --> 03:10:15,505 ROUND OF APPLAUSE FOR THEIR 5388 03:10:15,505 --> 03:10:15,939 PRESENTATION TOO. 5389 03:10:15,939 --> 03:10:21,545 [APPLAUSE] 5390 03:10:21,545 --> 03:10:23,747 >> WELL, IT WAS GREAT TO BE 5391 03:10:23,747 --> 03:10:23,980 INVITED. 5392 03:10:23,980 --> 03:10:24,381 THANK YOU SO MUCH. 5393 03:10:24,381 --> 03:10:28,184 I TONIGHT GET A CHA DON'T GET AK 5394 03:10:28,184 --> 03:10:29,185 WITH JOY VERY OFTEN SO THIS WAS 5395 03:10:29,185 --> 03:10:29,786 A DELIGHT FOR ME. 5396 03:10:29,786 --> 03:10:31,154 >> YES, THANK YOU SO MUCH FOR 5397 03:10:31,154 --> 03:10:31,521 THE INVITATION. 5398 03:10:31,521 --> 03:10:37,327 >> WE REALLY APPRECIATE IT. 5399 03:10:37,327 --> 03:10:41,464 >> SO THANKS, EVERYBODY, FOR ALL 5400 03:10:41,464 --> 03:10:43,199 OF YOUR ACTIVE PARTICIPATION. 5401 03:10:43,199 --> 03:10:46,536 THAT'S ONE OF THE THINGS I LIKE 5402 03:10:46,536 --> 03:10:50,607 SO MUCH ABOUT THIS GROUP. 5403 03:10:50,607 --> 03:10:51,841 AND ON TO YOUR PLANES AND WE'LL 5404 03:10:51,841 --> 03:10:52,976 SEE YOU IN MAY. 5405 03:10:52,976 --> 03:10:56,780 >> THANK YOU.