1 00:00:06,757 --> 00:00:09,660 >> WELL, THANK YOU. 2 00:00:09,660 --> 00:00:13,330 GOOD MORNING AND WELCOME TO THE 3 00:00:13,330 --> 00:00:14,765 185th MEETING OF THE NICHD 4 00:00:14,765 --> 00:00:15,666 ADVISORY COUNCIL. 5 00:00:15,666 --> 00:00:17,334 TODAY'S MEETING IS OPEN TO THE 6 00:00:17,334 --> 00:00:19,503 PUBLIC AND BROADCAST ON THE NIH 7 00:00:19,503 --> 00:00:23,707 VIDEOCAST NETWORK. 8 00:00:23,707 --> 00:00:25,643 TOMORROW ON DAY TWO WE'LL HOLD 9 00:00:25,643 --> 00:00:28,612 AN OPEN SESSION FROM 8:30 A.M. 10 00:00:28,612 --> 00:00:30,414 TO 9:15 AND THEN CONVENE OUR 11 00:00:30,414 --> 00:00:30,981 CLOSED SESSION. 12 00:00:30,981 --> 00:00:34,018 IT'S GREAT TO HAVE ALL OF OUR 13 00:00:34,018 --> 00:00:35,920 COUNCIL MEMBERS HERE IN PERSON 14 00:00:35,920 --> 00:00:38,355 AND SO MANY STAFF MEMBERS. 15 00:00:38,355 --> 00:00:40,124 I THINK THIS IS THE BIGGEST 16 00:00:40,124 --> 00:00:41,258 AUDIENCE SINCE BEFORE THE 17 00:00:41,258 --> 00:00:41,525 PANDEMIC. 18 00:00:41,525 --> 00:00:43,561 SO THANK YOU ALL FOR COMING AND 19 00:00:43,561 --> 00:00:46,030 I KNOW MANY OF OUR COUNCIL 20 00:00:46,030 --> 00:00:48,132 MEMBERS HAVE COME ACROSS THE 21 00:00:48,132 --> 00:00:50,267 ATLANTIC OCEAN OR ACROSS OUR 22 00:00:50,267 --> 00:00:51,202 COUNTRY SO WE REALLY APPRECIATE 23 00:00:51,202 --> 00:00:53,771 ALL OF YOU HAVE JOINED US. 24 00:00:53,771 --> 00:00:55,106 AND WE ALSO APPRECIATE PEOPLE 25 00:00:55,106 --> 00:00:58,042 WHO ARE WATCHING US ON THE 26 00:00:58,042 --> 00:00:58,476 VIDEOCAST. 27 00:00:58,476 --> 00:01:00,411 WITH US FOR THE FIRST TIME AS 28 00:01:00,411 --> 00:01:05,916 MEMBERS OF THE COUNCIL TODAY NEW 29 00:01:05,916 --> 00:01:06,584 MEMBERS. 30 00:01:06,584 --> 00:01:08,619 I WOULD KNOW LIKE TO CALL EACH 31 00:01:08,619 --> 00:01:13,858 TO BRIEFLY INTRODUCE THEMSELVES. 32 00:01:13,858 --> 00:01:15,926 CYNTHIA PLEASE START. 33 00:01:15,926 --> 00:01:23,734 >> I AM A MATERNAL FETAL 34 00:01:23,734 --> 00:01:26,704 MEDICINE SPECIALIST. 35 00:01:26,704 --> 00:01:29,006 >> GOOD MORNING I'M A CIVILIAN 36 00:01:29,006 --> 00:01:31,142 DEPUTY DIRECTOR AND 37 00:01:31,142 --> 00:01:31,876 CONGRESSIONAL DIRECTED MEDICAL 38 00:01:31,876 --> 00:01:32,977 RESEARCH PROGRAMS PART OF THE 39 00:01:32,977 --> 00:01:34,044 DEPARTMENT OF DEFENSE. 40 00:01:34,044 --> 00:01:36,180 WE OFFER DIFFERENT FUNDING 41 00:01:36,180 --> 00:01:38,649 OPPORTUNITIES FOR CONGRESSIONAL 42 00:01:38,649 --> 00:01:40,284 DIRECTED TOPICS FROM CANCERS AND 43 00:01:40,284 --> 00:01:41,919 MEDICINES. 44 00:01:41,919 --> 00:01:46,390 HAPPY TO BE HERE. 45 00:01:46,390 --> 00:01:47,925 >> THANK YOU SO MUCH. 46 00:01:47,925 --> 00:01:49,860 WITH THE HYBRID MEETING FORMAT 47 00:01:49,860 --> 00:01:51,428 THOSE JOINING VIA ZOOM REMEMBER 48 00:01:51,428 --> 00:01:53,364 TO UNMUTE YOURSELF BEFORE 49 00:01:53,364 --> 00:01:54,832 SPEAKING IN YOU'RE MICROPHONE 50 00:01:54,832 --> 00:01:56,634 AND STATE YOUR NAME SO THE 51 00:01:56,634 --> 00:01:58,102 TRANSCRIBER AND VIDEOCAST 52 00:01:58,102 --> 00:02:00,404 OBSERVERS WILL KNOW WHO IS 53 00:02:00,404 --> 00:02:00,671 SPEAKING. 54 00:02:00,671 --> 00:02:03,207 AFTER YOU SPEAK, PLEASE BE SURE 55 00:02:03,207 --> 00:02:09,146 TO MUTE YOUR MICROPHONE NORD IN 56 00:02:09,146 --> 00:02:11,916 ORDER TO PREVENT FEEDBACK LOOPS 57 00:02:11,916 --> 00:02:14,084 AND AUDITORY INTERFERENCES. 58 00:02:14,084 --> 00:02:16,854 NOW OVER TO DR. REBEKAH RASOOLY 59 00:02:16,854 --> 00:02:17,922 THE DIRECTOR OF EXTRAMURAL 60 00:02:17,922 --> 00:02:22,459 ACTIVITIES. 61 00:02:22,459 --> 00:02:23,160 >> GOOD MORNING. 62 00:02:23,160 --> 00:02:26,263 OUR COUNCIL MEMBER WEBSITE YOU 63 00:02:26,263 --> 00:02:34,104 SHOULD HAVE READ AND SIGNED THE 64 00:02:34,104 --> 00:02:35,306 CONFIDENTIALITY AND NON 65 00:02:35,306 --> 00:02:36,440 DISCLOSURE RULES FOR REVIEWING 66 00:02:36,440 --> 00:02:38,542 NIH GRANT APPLICATIONS. 67 00:02:38,542 --> 00:02:42,479 REMEMBER, YOU CANNOT SERVE AS A 68 00:02:42,479 --> 00:02:46,417 COUNCIL MEMBER ON ANY NIH 69 00:02:46,417 --> 00:02:47,117 PEER-REVIEW PANEL WHILE YOU ARE 70 00:02:47,117 --> 00:02:48,752 A COUNCIL MEMBER. 71 00:02:48,752 --> 00:02:51,121 AND YOU CANNOT PROVIDE 72 00:02:51,121 --> 00:02:53,023 SECOND-LEVEL REVIEW FOR ANY 73 00:02:53,023 --> 00:02:57,328 APPLICATION FOR WHICH YOU 74 00:02:57,328 --> 00:02:58,429 PARTICIPATE IN IN THE FIRST 75 00:02:58,429 --> 00:02:59,997 LEVEL OF PEER REVIEW IT'S NIH'S 76 00:02:59,997 --> 00:03:01,832 POLICY AN INDIVIDUAL CANNOT 77 00:03:01,832 --> 00:03:04,868 SERVE ON THE FIRST AND SECOND 78 00:03:04,868 --> 00:03:06,337 LEVELS OF REVIEW. 79 00:03:06,337 --> 00:03:09,173 NOW, I DID WANT TO ALSO BRING TO 80 00:03:09,173 --> 00:03:11,909 YOUR ATTENTION THAT TOMORROW 81 00:03:11,909 --> 00:03:17,047 DURING THE CLOSED SESSION WITH A 82 00:03:17,047 --> 00:03:20,651 LITTLE REVIEW MORE POLICIES AND 83 00:03:20,651 --> 00:03:24,822 CONFIDENTIALITY AND 84 00:03:24,822 --> 00:03:27,858 NON-DISCLOSURE AND PLEASE SHOW 85 00:03:27,858 --> 00:03:29,360 CLOUD-BASED VOICED SERVICES AT 86 00:03:29,360 --> 00:03:33,130 HOME OR OFFICE SUCH AS ALEXA 87 00:03:33,130 --> 00:03:36,600 DEVICES AS THEY MAY BE ABLE TO 88 00:03:36,600 --> 00:03:38,936 CAPTURE CONFIDENTIAL 89 00:03:38,936 --> 00:03:40,304 INFORMATION. 90 00:03:40,304 --> 00:03:41,905 WE'LL NOW TURN ATTENTION TO THE 91 00:03:41,905 --> 00:03:42,139 MINUTES. 92 00:03:42,139 --> 00:03:45,376 FOR THE JANUARY 23, 2024 MEETING 93 00:03:45,376 --> 00:03:46,510 WERE POSTED ON THE COUNCIL 94 00:03:46,510 --> 00:03:49,380 MEMBER WEBSITE AND WILL BE 95 00:03:49,380 --> 00:03:51,482 POSTED ON THE NICHD PUBLIC 96 00:03:51,482 --> 00:03:53,717 COUNCIL SITE ONCE THEY ARE 97 00:03:53,717 --> 00:03:53,984 APPROVED. 98 00:03:53,984 --> 00:03:56,053 SO I'M GOING TO ASK NOW FOR A 99 00:03:56,053 --> 00:03:59,123 VOTE TO APPROVE THE MINUTES. 100 00:03:59,123 --> 00:04:01,025 IN ORDER TO VOTE, PLEASE RAISE 101 00:04:01,025 --> 00:04:02,693 YOUR HAND IF YOU'RE IN THE ROOM 102 00:04:02,693 --> 00:04:05,763 AND FOR THOSE ON ZOOM, IF YOU'RE 103 00:04:05,763 --> 00:04:07,464 VOTING, GO TO THE REACTIONS 104 00:04:07,464 --> 00:04:10,134 BUTTON AT THE BOTTOM OF YOUR 105 00:04:10,134 --> 00:04:11,468 SCREEN AND AFTER CHOOSING THAT 106 00:04:11,468 --> 00:04:13,170 YOU CAN CHOOSE EITHER THE GREEN 107 00:04:13,170 --> 00:04:15,039 CIRCLE WITH THE CHECK ON IT FOR 108 00:04:15,039 --> 00:04:19,977 YES OR RED CIRCLE WITH AN X FOR 109 00:04:19,977 --> 00:04:21,679 NO OR RAISED HAND FOR ABSTAIN. 110 00:04:21,679 --> 00:04:23,914 MAY I HAVE I AMOTION TO APPROVE 111 00:04:23,914 --> 00:04:27,651 THE JANUARY MINUTES? 112 00:04:27,651 --> 00:04:32,990 >> MOVE TO APPROVE. 113 00:04:32,990 --> 00:04:34,591 >> SECOND. 114 00:04:34,591 --> 00:04:39,029 >> THANK YOU. 115 00:04:39,029 --> 00:04:46,136 ALL IN FAVOR. 116 00:04:46,136 --> 00:04:46,503 AND ANY OPPOSED? 117 00:04:46,503 --> 00:04:53,811 THANK YOU SO MUCH. 118 00:04:53,811 --> 00:04:55,045 FINALLY, BEFORE MOVING INTO THE 119 00:04:55,045 --> 00:04:58,349 MEETING, I WANTED TO REVIEW WITH 120 00:04:58,349 --> 00:05:00,884 YOU THE FUTURE MEETING DATES. 121 00:05:00,884 --> 00:05:02,119 WE LOOK FORWARD TO BEING 122 00:05:02,119 --> 00:05:05,556 TOGETHER IN PERSON SEPTEMBER ON 123 00:05:05,556 --> 00:05:06,924 THE 4th AND 5th. 124 00:05:06,924 --> 00:05:10,728 ON THE FIRST DAY OF THE MEET, 125 00:05:10,728 --> 00:05:12,996 SEPTEMBER 4 WE'LL BE ON THE NIH 126 00:05:12,996 --> 00:05:13,230 CAMPUS. 127 00:05:13,230 --> 00:05:16,600 THE REASON IS WE'D LIKE YOU TO 128 00:05:16,600 --> 00:05:19,503 TAKE A TOUR OF OUR EXTRAMURAL 129 00:05:19,503 --> 00:05:19,803 FACILITIES. 130 00:05:19,803 --> 00:05:25,109 THAT SEPTEMBER MEETING IS WHERE 131 00:05:25,109 --> 00:05:28,245 THE INTRAMURAL HAS A SPECIAL 132 00:05:28,245 --> 00:05:29,913 FOCUS AND THE SECOND DAY WE'LL 133 00:05:29,913 --> 00:05:32,116 BE IN THE MEETING AND JANUARY 134 00:05:32,116 --> 00:05:33,617 VIRTUALLY AND THE REST OF THE 135 00:05:33,617 --> 00:05:35,953 DATES YOU CAN SEE AS LISTED ON 136 00:05:35,953 --> 00:05:36,954 THE CALENDAR. 137 00:05:36,954 --> 00:05:40,524 I'LL NOW TURN IT BACK TO 138 00:05:40,524 --> 00:05:41,024 DR. BIANCHI. 139 00:05:41,024 --> 00:05:41,759 >> THANK YOU. 140 00:05:41,759 --> 00:05:51,135 CAN WE HAVE SLIDES UP, PLEASE. 141 00:05:51,135 --> 00:05:59,576 >> THERE'S A LOT HAPPEN AS YOU 142 00:05:59,576 --> 00:06:02,179 CAN SEE BY THE EXTENSIVE TALK 143 00:06:02,179 --> 00:06:02,446 OUTLINE. 144 00:06:02,446 --> 00:06:04,581 TODAY I'LL COVER THE FISCAL YEAR 145 00:06:04,581 --> 00:06:06,784 '25 BUDGET. 146 00:06:06,784 --> 00:06:08,685 WE'RE WELL INTO THE '24 BUDGET 147 00:06:08,685 --> 00:06:11,121 AND WE'VE BEEN VERY BUSY WITH 148 00:06:11,121 --> 00:06:12,556 CONGRESSIONAL INTERACTIONS. 149 00:06:12,556 --> 00:06:15,859 WE'LL TALK ABOUT OUR RESEARCH 150 00:06:15,859 --> 00:06:20,864 PORTFOLIO FOR SOME NEW MEMBERS 151 00:06:20,864 --> 00:06:21,965 HERE FOR THE FIRST TIME AS WELL 152 00:06:21,965 --> 00:06:24,535 AS OUR NEW REFRESH OF THE 153 00:06:24,535 --> 00:06:25,636 STRATEGIC PLANNING EFFORT. 154 00:06:25,636 --> 00:06:27,438 A LOT OF OUR ACTIVITIES ARE 155 00:06:27,438 --> 00:06:29,339 RELATED TO WOMEN'S HEALTH AND 156 00:06:29,339 --> 00:06:31,708 YOU'LL HEAR ABOUT THE WOMEN'S 157 00:06:31,708 --> 00:06:33,110 HEALTH RESEARCH INITIATIVE FROM 158 00:06:33,110 --> 00:06:35,112 THE WHITE HOUSE. 159 00:06:35,112 --> 00:06:45,656 OUR ACTIVITIES IN ENDRIGHTRY -- 160 00:06:46,290 --> 00:06:47,925 ENDOMEETRIOSIS AND TALK ABOUT 161 00:06:47,925 --> 00:06:49,326 PEDIATRICS IN THE ALL OF US 162 00:06:49,326 --> 00:06:54,531 PROGRAM, WE'LL TALK ABOUT 163 00:06:54,531 --> 00:06:58,669 MEDICAL DEVICES AS WELL AS OTHER 164 00:06:58,669 --> 00:06:59,903 UPDATES ON CENTRAL KEY NIH 165 00:06:59,903 --> 00:07:03,140 PROGRAMS AND POLICIES WE DIDN'T 166 00:07:03,140 --> 00:07:05,843 TALK ABOUT THE LAST COUNCIL. 167 00:07:05,843 --> 00:07:08,345 WE WILL CONGRATULATE ONE OF OUR 168 00:07:08,345 --> 00:07:09,746 EXTRAMURAL PROGRAM MEMBERS AND 169 00:07:09,746 --> 00:07:12,115 THEN GET TO STAFF UPDATES. 170 00:07:12,115 --> 00:07:15,285 AND WE'LL LEAVE TIME FOR 171 00:07:15,285 --> 00:07:16,386 QUESTIONS. 172 00:07:16,386 --> 00:07:17,988 NOW, THE PRESIDENT CAN COMPOSE 173 00:07:17,988 --> 00:07:19,923 THE BUDGET BUT IT'S CONGRESS WHO 174 00:07:19,923 --> 00:07:22,125 APPROPRIATES SO DON'T GET TOO 175 00:07:22,125 --> 00:07:24,561 EXCITED ABOUT THE FISCAL YEAR 176 00:07:24,561 --> 00:07:25,863 '25 PRESIDENT'S BUDGET. 177 00:07:25,863 --> 00:07:29,066 THIS IS WHAT HE WOULD LIKE TO 178 00:07:29,066 --> 00:07:29,933 HAVE BUT OF COURSE CONGRESS HAS 179 00:07:29,933 --> 00:07:32,169 TO AGREE TO IT. 180 00:07:32,169 --> 00:07:36,573 HE IS PROPOSING A $50.1 BILLION 181 00:07:36,573 --> 00:07:39,476 THAT WOULD BE A SEVERAL BILLION 182 00:07:39,476 --> 00:07:40,077 DOLLAR INCREASE. 183 00:07:40,077 --> 00:07:42,479 WITH A SLIGHT INCREASE FOR 184 00:07:42,479 --> 00:07:43,113 NICHD. 185 00:07:43,113 --> 00:07:45,949 WE'RE ALMOST AT $1.76 BILLION 186 00:07:45,949 --> 00:07:46,583 NOW. 187 00:07:46,583 --> 00:07:48,385 HE WOULD BE PROPOSING ANOTHER 188 00:07:48,385 --> 00:07:48,919 BILLION. 189 00:07:48,919 --> 00:07:51,488 IN WOMEN'S HEALTH RESEARCH, HE'S 190 00:07:51,488 --> 00:07:54,391 PROPOSING A NEW NATIONWIDE 191 00:07:54,391 --> 00:07:55,993 NETWORK OF CENTERS OF EXCELLENCE 192 00:07:55,993 --> 00:07:59,129 AND INNOVATION IN WOMEN'S HEALTH 193 00:07:59,129 --> 00:08:01,665 AND HE'S PROPOSING TO DOUBLE THE 194 00:08:01,665 --> 00:08:05,135 OFFICE OF RESEARCH ON WOMEN'S 195 00:08:05,135 --> 00:08:08,539 HEALTH AT NIH. 196 00:08:08,539 --> 00:08:09,673 THE HOUSE APPROPRIATION 197 00:08:09,673 --> 00:08:10,507 SUBCOMMITTEE THAT COVERS THE NIH 198 00:08:10,507 --> 00:08:14,545 BUDGET IS NOT GOING TO HAVE IT 199 00:08:14,545 --> 00:08:16,980 THIS YEAR BUT ON MAY 23 THERE 200 00:08:16,980 --> 00:08:19,416 WERE SEVEN APPROPRIATION 201 00:08:19,416 --> 00:08:20,117 HEARINGS. 202 00:08:20,117 --> 00:08:21,552 NICHD DID NOT PRESENT AT THAT 203 00:08:21,552 --> 00:08:22,686 MEETING BUT A NUMBER OF TOPICS 204 00:08:22,686 --> 00:08:28,725 THAT CAME UP RELATED TO OUR 205 00:08:28,725 --> 00:08:31,595 INTERESTS WERE RAISED AND IT WAS 206 00:08:31,595 --> 00:08:32,796 A POSITIVE HEARING. 207 00:08:32,796 --> 00:08:34,464 A NUMBER OF OUR COLLEAGUES AS 208 00:08:34,464 --> 00:08:38,602 WELL AS DR. BERTAGNOLLI OUR 209 00:08:38,602 --> 00:08:39,703 DIRECTOR FOR HER FIRST SENATE 210 00:08:39,703 --> 00:08:41,338 HEARING SINCE BECOMING DIRECTOR 211 00:08:41,338 --> 00:08:42,105 AND WAS OVER ALL VERY WELL 212 00:08:42,105 --> 00:08:44,007 RECEIVED. 213 00:08:44,007 --> 00:08:46,543 NOW, I MENTIONED WE'VE BEEN VERY 214 00:08:46,543 --> 00:08:50,047 BUSY WITH CONGRESSIONAL 215 00:08:50,047 --> 00:08:53,750 INTERACTIONS IN THE UPPER LEFT 216 00:08:53,750 --> 00:08:55,018 PHOTO IS REPRESENTATIVE LAUREN 217 00:08:55,018 --> 00:08:57,688 UNDERWOOD OF ILLINOIS. 218 00:08:57,688 --> 00:09:00,424 SHE IS AN INCREDIBLE CHAMPION 219 00:09:00,424 --> 00:09:02,159 FOR WOMEN'S HEALTH RELATED 220 00:09:02,159 --> 00:09:02,459 RESEARCH. 221 00:09:02,459 --> 00:09:05,495 SHE'S BEEN THE CHAMPION BEHIND 222 00:09:05,495 --> 00:09:07,130 THE IMPROVE INITIATIVE BECAUSE 223 00:09:07,130 --> 00:09:09,199 MENOPAUSE IS MENTIONED IN THE 224 00:09:09,199 --> 00:09:10,634 PRESIDENT'S EXECUTIVE ORDER ON 225 00:09:10,634 --> 00:09:13,170 WOMEN'S HEALTH RESEARCH, SHE HAD 226 00:09:13,170 --> 00:09:14,771 A VIRTUAL BRIEFING WITH US ON 227 00:09:14,771 --> 00:09:15,839 MENOPAUSE AND WE'RE ABOUT TO 228 00:09:15,839 --> 00:09:18,575 MEET WITH HER IN THE NEXT COUPLE 229 00:09:18,575 --> 00:09:21,078 OF WEEKS AGAIN ON AN UPDATE ON 230 00:09:21,078 --> 00:09:22,813 THE IMPROVE INITIATIVE. 231 00:09:22,813 --> 00:09:28,452 THE MIDDLE PICTURE, I HAD THE 232 00:09:28,452 --> 00:09:29,953 PLEASURE OF MEETING 233 00:09:29,953 --> 00:09:33,890 REPRESENTATIVE LETLOW FROM A 234 00:09:33,890 --> 00:09:35,926 MATERNITY CARE DESERT AREA IN 235 00:09:35,926 --> 00:09:36,994 LOUISIANA INTERESTED IN MATERNAL 236 00:09:36,994 --> 00:09:39,496 HEALTH AND WOMEN'S HEALTH 237 00:09:39,496 --> 00:09:39,763 RESEARCH. 238 00:09:39,763 --> 00:09:42,499 I ALSO SPOKE AT THE WOMEN'S 239 00:09:42,499 --> 00:09:44,701 CONGRESSIONAL POLICY INSTITUTE. 240 00:09:44,701 --> 00:09:48,639 THERE WERE TWO MEMBERS THERE 241 00:09:48,639 --> 00:09:53,610 REPRESENTATIVE ROBIN KELLY AND 242 00:09:53,610 --> 00:09:54,945 CHAPOWSKI IN ILLINOIS INTERESTED 243 00:09:54,945 --> 00:09:57,014 IN MATERNAL MORTALITY AND WHAT 244 00:09:57,014 --> 00:10:00,817 WE CAN DO TO REDUCE MATERNAL 245 00:10:00,817 --> 00:10:01,084 MORTALITY. 246 00:10:01,084 --> 00:10:05,122 THE ACT FOR NIH IS A FOUNDATION 247 00:10:05,122 --> 00:10:07,090 THAT WORKS WITH CONGRESS TO 248 00:10:07,090 --> 00:10:08,458 SUPPORT NIH AND INFECTIOUS THE 249 00:10:08,458 --> 00:10:08,792 BUDGET. 250 00:10:08,792 --> 00:10:10,460 THE LOWER RIGHT PICTURE THERE 251 00:10:10,460 --> 00:10:11,962 THE WOMEN ON THE LEFT THE PURPLE 252 00:10:11,962 --> 00:10:22,439 HAIR AND WE SEE THE RANKING 253 00:10:26,410 --> 00:10:28,178 MEMBER ON THE HOUSE SUBCOMMITTEE 254 00:10:28,178 --> 00:10:30,147 ON LABOR HHS SO SHE'S ALWAYS 255 00:10:30,147 --> 00:10:32,816 BEEN VERY INVOLVED IN OUR 256 00:10:32,816 --> 00:10:33,050 BUDGET. 257 00:10:33,050 --> 00:10:36,953 VERY SUPPORTIVE OF NICHD'S 258 00:10:36,953 --> 00:10:37,354 INTEREST. 259 00:10:37,354 --> 00:10:39,356 ANY TIME SHE HAS HER HANDS ON MY 260 00:10:39,356 --> 00:10:43,126 SHOULDER IT'S A GOOD DAY. 261 00:10:43,126 --> 00:10:47,130 NEXT TO ME IS DR. TUCCI FROM THE 262 00:10:47,130 --> 00:10:48,932 NATIONAL INSTITUTE OF DEAFNESS 263 00:10:48,932 --> 00:10:51,001 AND COMMUNICATION DISORDERS. 264 00:10:51,001 --> 00:10:52,202 IT'S A WONDERFUL EVENT. 265 00:10:52,202 --> 00:10:53,503 THERE WERE WELL OVER 20 MEMBER 266 00:10:53,503 --> 00:10:54,671 OF CONGRESS. 267 00:10:54,671 --> 00:10:57,240 AGAIN, A VERY POSITIVE 268 00:10:57,240 --> 00:10:58,742 INTERACTION. 269 00:10:58,742 --> 00:10:59,976 THEN LASTLY IN THE UPPER RIGHT 270 00:10:59,976 --> 00:11:05,949 TO THE RIGHT OF ME IS 271 00:11:05,949 --> 00:11:08,552 REPRESENTATIVE NIKEMA WILLIAMS 272 00:11:08,552 --> 00:11:13,724 FROM THE ATLANTA AREA AND WAS 273 00:11:13,724 --> 00:11:15,092 RE-INTRODUCING THE ENDOMETRIOSIS 274 00:11:15,092 --> 00:11:17,561 CARES ACT. 275 00:11:17,561 --> 00:11:19,896 THERE WAS AN EVENT AT THE 276 00:11:19,896 --> 00:11:21,398 CAPITAL AND WE MET A NUMBER OF 277 00:11:21,398 --> 00:11:24,501 WOMEN'S WHO ARE ADVOCATES AND 278 00:11:24,501 --> 00:11:29,005 ALSO PERSONALLY AFFECTED BY 279 00:11:29,005 --> 00:11:29,339 ENDOMETRIOSIS. 280 00:11:29,339 --> 00:11:31,108 IT'S BEEN A BUSY COUPLE OF 281 00:11:31,108 --> 00:11:31,341 MONTHS. 282 00:11:31,341 --> 00:11:32,476 OUR STAFF HAVE HAD BRIEFINGS 283 00:11:32,476 --> 00:11:37,881 WITH THE STAFF OF OTHER MEMBERS 284 00:11:37,881 --> 00:11:45,021 INCLUDING REPRESENTATIVE 285 00:11:45,021 --> 00:11:46,156 CISCOMANI AND REPRESENT CLARK 286 00:11:46,156 --> 00:11:48,258 AND REPRESENTATIVE ESHOO AND 287 00:11:48,258 --> 00:11:49,793 REPRESENTATIVE SCOTT AND THEY'RE 288 00:11:49,793 --> 00:11:51,128 ALL INTERESTED IN SPECIFIC AREAS 289 00:11:51,128 --> 00:11:59,136 OF OUR PORTFOLIO EITHER MATERNAL 290 00:11:59,136 --> 00:12:02,072 AND/OR CHILD HEALTH. 291 00:12:02,072 --> 00:12:04,841 SO AGAIN FOR PEOPLE HERE FOR THE 292 00:12:04,841 --> 00:12:07,110 FIRST TIME JUST TO REMIND YOU, 293 00:12:07,110 --> 00:12:08,278 WHAT IS OUR PORTFOLIO? 294 00:12:08,278 --> 00:12:11,648 OF COURSE, WE'RE NAMED FOR 295 00:12:11,648 --> 00:12:15,118 EUNICE KENNEDY SHRIVER ON THE 296 00:12:15,118 --> 00:12:17,654 LEFT THE SISTER OF PRESIDENT 297 00:12:17,654 --> 00:12:20,023 KENNEDY WHOSE IDEA IT WAS TO 298 00:12:20,023 --> 00:12:22,459 HAVE A SEPARATE INSTITUTE AS IT 299 00:12:22,459 --> 00:12:24,194 SAYS ON THE ORIGINAL 300 00:12:24,194 --> 00:12:26,263 LEGISLATION, MATERNAL AND HUMAN 301 00:12:26,263 --> 00:12:27,864 HEALTH AND DEVELOPMENT. 302 00:12:27,864 --> 00:12:32,068 OUR PORTFOLIO IS ABOUT 55% 303 00:12:32,068 --> 00:12:33,537 PEDIATRICS, 30% REPRODUCTIVE 304 00:12:33,537 --> 00:12:35,705 HEALTH EVERYTHING FROM THE 305 00:12:35,705 --> 00:12:37,707 DEVELOPMENT OF REPRODUCTIVE 306 00:12:37,707 --> 00:12:40,710 ORGANS TO CONTRACEPTION TO 307 00:12:40,710 --> 00:12:43,213 PREGNANCY TO POSTPARTUM ALL THE 308 00:12:43,213 --> 00:12:46,616 WAY UP UNTIL EARLY AND INCLUDING 309 00:12:46,616 --> 00:12:47,117 EARLY MENOPAUSE. 310 00:12:47,117 --> 00:12:55,692 EARLY MENOPAUSE IS ABOUT THE AGE 311 00:12:55,692 --> 00:12:57,427 OF 45 AND WE HAVE A STAKE IN 312 00:12:57,427 --> 00:12:58,762 THAT AS WELL. 313 00:12:58,762 --> 00:13:01,598 AND 15% OF OUR PORTFOLIO PARTLY 314 00:13:01,598 --> 00:13:03,266 THROUGH THE NATIONAL CENTER FOR 315 00:13:03,266 --> 00:13:07,537 MEDICAL REHABILITATION RESEARCH 316 00:13:07,537 --> 00:13:10,807 IS IN INTELLECTUAL, 317 00:13:10,807 --> 00:13:12,375 DEVELOPMENTAL DISABILITIES AND 318 00:13:12,375 --> 00:13:14,044 PHYSICAL REHABILITATION 319 00:13:14,044 --> 00:13:16,012 INCLUDING ADULTS SO SOME PEOPLE 320 00:13:16,012 --> 00:13:17,447 ARE SURPRISED WHEN I SAID YES, 321 00:13:17,447 --> 00:13:19,115 WE TO RESEARCH ON ADULTS. 322 00:13:19,115 --> 00:13:24,921 AND TO BRING IT FULL CIRCLE ON 323 00:13:24,921 --> 00:13:34,364 THE RIGHT YOU SEE MARIA SHRIVER 324 00:13:34,364 --> 00:13:38,635 AND SERGEANT SHRIVER'S FOUR 325 00:13:38,635 --> 00:13:41,004 CHILDREN AND TIM WAS A FORMER 326 00:13:41,004 --> 00:13:41,972 MEMBER OF OUR ADVISORY COUNCIL 327 00:13:41,972 --> 00:13:44,975 AND MARIA IS VERY ACTIVE IN THE 328 00:13:44,975 --> 00:13:46,176 WOMEN'S HEALTH RESEARCH 329 00:13:46,176 --> 00:13:46,443 INSTITUTE. 330 00:13:46,443 --> 00:13:49,679 SO WE CONTINUE OUR CONNECTION 331 00:13:49,679 --> 00:13:50,447 WITH THE SHRIVER FAMILY TO THIS 332 00:13:50,447 --> 00:13:56,052 DAY. 333 00:13:56,052 --> 00:14:02,025 SO IN 2020, OUR STAFF THE STAFF 334 00:14:02,025 --> 00:14:05,962 WHO WERE AROUND IN 2019, 2020, 335 00:14:05,962 --> 00:14:08,164 WE FINALIZED OUR STRATEGIC PLAN 336 00:14:08,164 --> 00:14:14,037 WHICH WAS RID OF BY THE 21st 337 00:14:14,037 --> 00:14:16,206 CENTURY'S CURE ACT BUT WAS A 338 00:14:16,206 --> 00:14:19,109 NECESSITY SINCE WE DIDN'T HAVE A 339 00:14:19,109 --> 00:14:21,211 STRATEGIC PLAN PRIOR TO 2000. 340 00:14:21,211 --> 00:14:23,914 WE HAVE FIVE THEMES AND THOSE 341 00:14:23,914 --> 00:14:25,582 SERVED ON COUNCIL NOW A NUMBER 342 00:14:25,582 --> 00:14:26,716 OF YEARS KNOW THE FIVE THEMES 343 00:14:26,716 --> 00:14:30,020 BECAUSE WE ENCOURAGE OUR PROGRAM 344 00:14:30,020 --> 00:14:32,222 OFFICIALS TO CONNECT INITIATIVES 345 00:14:32,222 --> 00:14:34,457 TO OUR STRATEGIC PLAN AND THESE 346 00:14:34,457 --> 00:14:35,959 INCLUDE UNDERSTANDING THE 347 00:14:35,959 --> 00:14:37,794 MOLECULAR, CELLULAR AND 348 00:14:37,794 --> 00:14:40,964 STRUCTURAL BASIS OF DEVELOPMENT, 349 00:14:40,964 --> 00:14:42,399 PROMOTING GYNECOLOGIC AND 350 00:14:42,399 --> 00:14:44,401 REPRODUCTIVE HEALTH, SETTING THE 351 00:14:44,401 --> 00:14:46,269 FOUNDATION FOR HEALTHY 352 00:14:46,269 --> 00:14:47,971 PREGNANCIES AND LIFE LONG 353 00:14:47,971 --> 00:14:48,772 WELLNESS. 354 00:14:48,772 --> 00:14:49,973 IMPROVING CHILD AND ADOLESCENT 355 00:14:49,973 --> 00:14:52,375 HEALTH AND THE TRANSITION TO 356 00:14:52,375 --> 00:14:55,111 ADULTHOOD AND ADVANCING SAFE AND 357 00:14:55,111 --> 00:14:56,479 EFFECTIVE THERAPEUTICS AN 358 00:14:56,479 --> 00:14:58,114 DEVICES FOR PREGNANT AND 359 00:14:58,114 --> 00:14:59,482 LACTATING WOMEN, CHILDREN AND 360 00:14:59,482 --> 00:15:00,750 PEOPLE WITH DISABILITIES. 361 00:15:00,750 --> 00:15:03,119 AND I THINK THE LAST FIVE YEARS 362 00:15:03,119 --> 00:15:08,191 WE'VE MADE AN ENORMOUS PROGRESS 363 00:15:08,191 --> 00:15:11,861 IN TERMS OF LINKING OUR FUNDING 364 00:15:11,861 --> 00:15:15,432 TO THESE THEMES TO ADDRESS THESE 365 00:15:15,432 --> 00:15:17,934 IMPORTANT ISSUES. 366 00:15:17,934 --> 00:15:21,037 FIVE YEARS HAVE GONE BY QUICKLY 367 00:15:21,037 --> 00:15:24,374 AND WE'RE NOW IN THE PROCESS OF 368 00:15:24,374 --> 00:15:26,276 WORKING ON OUR NEXT STRATEGIC 369 00:15:26,276 --> 00:15:29,980 PLAN WHICH WILL BE FROM 2025 TO 370 00:15:29,980 --> 00:15:32,949 2030. 371 00:15:32,949 --> 00:15:35,118 WE PRESENTED IN PART SOME OF OUR 372 00:15:35,118 --> 00:15:37,887 PROGRESS IN TERMS OF THE 373 00:15:37,887 --> 00:15:40,523 RESEARCH AREAS, STEWARDSHIP, 374 00:15:40,523 --> 00:15:41,791 MANAGEMENT AND ACCOUNTABILITY. 375 00:15:41,791 --> 00:15:44,427 OUR STAFF HAS BEEN TRACKING AND 376 00:15:44,427 --> 00:15:46,663 DOCUMENTING ACTIVITIES AND 377 00:15:46,663 --> 00:15:48,999 ACHIEVEMENTS TOWARDS THE CURRENT 378 00:15:48,999 --> 00:15:49,299 OBJECTIVES. 379 00:15:49,299 --> 00:15:50,700 AND WE'RE IN THE PROCESS OF 380 00:15:50,700 --> 00:15:53,670 REFRESHING THE STRATEGIC PLAN. 381 00:15:53,670 --> 00:15:55,972 WE DON'T ANTICIPATE MAJOR 382 00:15:55,972 --> 00:15:58,141 CHANGES IN THE THEMES. 383 00:15:58,141 --> 00:16:00,577 WE DO ANTICIPATE TWEAKS AND 384 00:16:00,577 --> 00:16:01,611 UPDATING BECAUSE SCIENCE 385 00:16:01,611 --> 00:16:02,245 PROGRESSES VERY QUICKLY AND 386 00:16:02,245 --> 00:16:04,047 REMEMBER WHEN WE DID THE LAST 387 00:16:04,047 --> 00:16:08,885 STRATEGIC PLAN IT WAS BEFORE THE 388 00:16:08,885 --> 00:16:11,988 PANDEMIC AND BEFORE A LOT OF 389 00:16:11,988 --> 00:16:15,125 ISSUES RELATED TO RACISM AND THE 390 00:16:15,125 --> 00:16:16,960 GEORGE EMPLOYED EVENTS. 391 00:16:16,960 --> 00:16:20,296 SO WE ARE GOING TO ASK FOR ALL 392 00:16:20,296 --> 00:16:23,500 YOUR INPUT AND THERE WILL BE A 393 00:16:23,500 --> 00:16:24,934 REQUEST FOR INFORMATION 394 00:16:24,934 --> 00:16:27,137 ANTICIPATED IN THE SUMMER OF 395 00:16:27,137 --> 00:16:30,006 THIS YEAR AND THEN WE WILL WORK 396 00:16:30,006 --> 00:16:32,742 ON TWEAKING THE THEMES AND 397 00:16:32,742 --> 00:16:35,145 RELEASING THE STRATEGIC PLAN 398 00:16:35,145 --> 00:16:45,522 PROBABLY NEXT SPRING. 399 00:16:51,094 --> 00:16:53,229 WE'LL START WITH THE FIRST TOPIC 400 00:16:53,229 --> 00:16:55,832 WHICH I'VE BEEN INCREASINGLY 401 00:16:55,832 --> 00:16:58,601 CALLING WOMEN'S HEALTH BELOW THE 402 00:16:58,601 --> 00:16:59,869 BELT BECAUSE THERE'S A LOT OF 403 00:16:59,869 --> 00:17:03,106 DISCUSSION ABOUT WHAT IS WOMEN'S 404 00:17:03,106 --> 00:17:06,276 HEALTH AND WHERE IS NICHD'S 405 00:17:06,276 --> 00:17:09,813 FOCUS IN TERMS OF THE OVER ALL 406 00:17:09,813 --> 00:17:11,981 WOMEN'S HEALTH RESEARCH 407 00:17:11,981 --> 00:17:12,816 INITIATIVE. 408 00:17:12,816 --> 00:17:14,651 NOW, AGAIN SOME WHO ARE 409 00:17:14,651 --> 00:17:16,019 RELATIVELY NEW TO COUNCIL MAY 410 00:17:16,019 --> 00:17:18,521 NOT APPRECIATE THE FACT WE HAVE 411 00:17:18,521 --> 00:17:20,156 12 EXTRAMURAL BRANCHES, THE 412 00:17:20,156 --> 00:17:23,493 BRANCH CHIEFS ARE MOSTLY HERE. 413 00:17:23,493 --> 00:17:25,361 YOU WILL SEE SOME OF THEM IN 414 00:17:25,361 --> 00:17:27,630 PERSON AND SOME OF THEM ON VIDEO 415 00:17:27,630 --> 00:17:29,999 AS THEY PRESENT SOME OF THEIR 416 00:17:29,999 --> 00:17:32,602 CONCEPTS. 417 00:17:32,602 --> 00:17:35,305 THESE ARE BRANCHS THAT HAVE 418 00:17:35,305 --> 00:17:36,539 RELATIONSHIP TO WOMEN'S HEALTH 419 00:17:36,539 --> 00:17:38,041 AND YOU CAN SEE A LOT OF THEM 420 00:17:38,041 --> 00:17:40,610 ARE GYNECOLOGIC HEALTH AND 421 00:17:40,610 --> 00:17:41,377 DISEASE. 422 00:17:41,377 --> 00:17:42,445 THERE'S CONTRACEPTION RESEARCH. 423 00:17:42,445 --> 00:17:45,415 THERE'S FERTILITY AND 424 00:17:45,415 --> 00:17:47,984 INFERTILITY, THERE'S PREGNANCY 425 00:17:47,984 --> 00:17:53,990 AND PERINATOLOGY AND OBSTETRIC 426 00:17:53,990 --> 00:17:57,760 AND PHARMACOLOGY THERAPEUTICS 427 00:17:57,760 --> 00:17:58,328 AND POPULATION DYNAMICS. 428 00:17:58,328 --> 00:18:03,766 WHILE THIS FITS IN WITH THE 429 00:18:03,766 --> 00:18:07,203 PRESIDENT'S WHITE HOUSE WOMEN'S 430 00:18:07,203 --> 00:18:08,037 INITIATIVE CHAMPIONED BY THE 431 00:18:08,037 --> 00:18:10,340 FIRST LADY, WE WERE FORTUNATE TO 432 00:18:10,340 --> 00:18:15,111 GO TO THE SIGNING OF THE 433 00:18:15,111 --> 00:18:20,884 EXECUTIVE ORDER ON MARCH 18 AND 434 00:18:20,884 --> 00:18:23,086 THE PRESIDENT WAS INTERESTED IN 435 00:18:23,086 --> 00:18:25,054 MEETING PEOPLE. 436 00:18:25,054 --> 00:18:25,989 WE WERE NOT AT THE FRONT DESK 437 00:18:25,989 --> 00:18:28,358 WHEN THE ORDER WAS SIGNED BUT HE 438 00:18:28,358 --> 00:18:29,592 BASICALLY WORKED THE ROPES AND 439 00:18:29,592 --> 00:18:33,930 ASKED WHAT WE WERE DOING. 440 00:18:33,930 --> 00:18:35,131 WE WERE WORKING ON THIS. 441 00:18:35,131 --> 00:18:36,833 THE EXECUTIVE ORDER IS MEANT TO 442 00:18:36,833 --> 00:18:40,170 BE A CROSS-GOVERNMENT INITIATIVE 443 00:18:40,170 --> 00:18:42,005 TO PROMOTE COLLABORATIVE 444 00:18:42,005 --> 00:18:42,839 INTERDISCIPLINARY RESEARCH TO 445 00:18:42,839 --> 00:18:45,108 ASSESS UNMET NEEDS IN WOMEN'S 446 00:18:45,108 --> 00:18:45,942 HEALTH RESEARCH AND THERE'S A 447 00:18:45,942 --> 00:18:50,480 SPECIFIC CALL OUT AS I SAID 448 00:18:50,480 --> 00:18:53,983 ABOUT MENOPAUSE BUT ALSO THERE'S 449 00:18:53,983 --> 00:18:56,119 A NEED FOR RESEARCH AGENDA AS 450 00:18:56,119 --> 00:18:57,820 WELL AS COMMON DATA ELEMENTS. 451 00:18:57,820 --> 00:18:59,689 WHAT NIH IS DOING WE HAVE PUT 452 00:18:59,689 --> 00:19:02,492 OUT A NOTICE OF SPECIAL 453 00:19:02,492 --> 00:19:03,126 INTEREST. 454 00:19:03,126 --> 00:19:05,161 WE ARE COLLECTING OPPORTUNITIES 455 00:19:05,161 --> 00:19:07,497 THAT WILL BE A SO-CALLED FRONT 456 00:19:07,497 --> 00:19:08,898 DOOR COLLECTION OF NIH GRANT 457 00:19:08,898 --> 00:19:13,136 OPPORTUNITIES RELATED TO WOMEN'S 458 00:19:13,136 --> 00:19:13,803 HEALTH RESEARCH. 459 00:19:13,803 --> 00:19:17,974 IF YOU HAVE LISTENED TO THE TALK 460 00:19:17,974 --> 00:19:21,144 AROUND THE INITIATIVE AND YOU 461 00:19:21,144 --> 00:19:23,146 MIGHT HAVE HEARD THAT THE 462 00:19:23,146 --> 00:19:25,715 PRESIDENT IS PROPOSING $12 463 00:19:25,715 --> 00:19:27,984 BILLION FOR THIS, AGAIN, THE 464 00:19:27,984 --> 00:19:29,852 PRESIDENT CAN PROPOSE BUT 465 00:19:29,852 --> 00:19:30,620 CONGRESS WILL NEED TO 466 00:19:30,620 --> 00:19:33,256 APPROPRIATE AND THIS WILL NOT 467 00:19:33,256 --> 00:19:36,726 HAPPEN ANYWAY UNTIL 2025 OR EVEN 468 00:19:36,726 --> 00:19:39,128 2026 WHICH WE DON'T KNOW WHAT 469 00:19:39,128 --> 00:19:41,698 WILL BE HAPPENING THEN. 470 00:19:41,698 --> 00:19:44,567 SO IF YOU WERE EXCITED ABOUT 471 00:19:44,567 --> 00:19:46,736 POTENTIAL $12 BILLION ON WOMEN'S 472 00:19:46,736 --> 00:19:49,672 HEALTH RESEARCH IT'S NOT A REAL 473 00:19:49,672 --> 00:19:49,906 NUMBER. 474 00:19:49,906 --> 00:19:51,441 FURTHERMORE, THERE'S BEEN A 475 00:19:51,441 --> 00:19:53,876 DISCUSSION ABOUT A CENTRAL FUND 476 00:19:53,876 --> 00:19:59,115 OF $200 BILLION AND THERE'S NO 477 00:19:59,115 --> 00:19:59,749 NEW MONEY. 478 00:19:59,749 --> 00:20:03,453 WE DON'T REALLY KNOW IF THE $200 479 00:20:03,453 --> 00:20:04,887 BILLION IS A COMPILATION OF WHAT 480 00:20:04,887 --> 00:20:07,123 WE'RE ALREADY FUNDING OR NOT BUT 481 00:20:07,123 --> 00:20:08,691 WE'RE WORKING ON AN EXECUTIVE 482 00:20:08,691 --> 00:20:14,130 SUMMARY THAT HAS BEEN SENT TO 483 00:20:14,130 --> 00:20:19,836 THE WHITE HOUSE AND THERE'S A 484 00:20:19,836 --> 00:20:21,571 PRESSURE BEFORE NOVEMBER. 485 00:20:21,571 --> 00:20:24,007 WHAT HAS NICHD DONE IN RESPONSE 486 00:20:24,007 --> 00:20:28,845 TO THE EXECUTIVE ORDER AND THE 487 00:20:28,845 --> 00:20:29,379 INITIATIVE? 488 00:20:29,379 --> 00:20:33,283 WE HAD AS ONE OF OUR 10 489 00:20:33,283 --> 00:20:36,019 ASPIRATIONAL GOALS IN THE 2020 490 00:20:36,019 --> 00:20:46,529 STRATEGIC PLAN TO IMPROVE THE 491 00:20:47,196 --> 00:20:52,669 DIAGNOSIS, TREATMENT OF 492 00:20:52,669 --> 00:20:53,002 ENDOMETRIOSIS. 493 00:20:53,002 --> 00:20:54,404 IT'S A VERY COMMON CONDITION 494 00:20:54,404 --> 00:20:58,341 THAT AFFECTS ONE IN 10 CHILDREN 495 00:20:58,341 --> 00:20:59,142 WITHOUT ANY PARTICULAR 496 00:20:59,142 --> 00:21:00,943 PREDILECTION FOR RACE OR ETHNIC 497 00:21:00,943 --> 00:21:03,112 BACKGROUND. 498 00:21:03,112 --> 00:21:05,848 IT'S EXTREMELY DIFFICULT TO 499 00:21:05,848 --> 00:21:06,716 DIAGNOSE BECAUSE THE SYSTEMS 500 00:21:06,716 --> 00:21:09,852 INCLUDE PAIN BUT ALSO CAN 501 00:21:09,852 --> 00:21:11,120 INCLUDE OTHER PROBLEMS AND THE 502 00:21:11,120 --> 00:21:12,021 SYMPTOMS CAN OVERLAP WITH OTHER 503 00:21:12,021 --> 00:21:16,559 CONDITIONS. 504 00:21:16,559 --> 00:21:18,895 THE PROBLEM IS THE DIAGNOSIS ON 505 00:21:18,895 --> 00:21:21,164 AVERAGE TAKES SEVEN TO 10 YEARS 506 00:21:21,164 --> 00:21:24,567 AND THERE'S NO NON-INVASIVE 507 00:21:24,567 --> 00:21:26,202 DIAGNOSTIC TEST SO THAT'S A 508 00:21:26,202 --> 00:21:26,769 MAJOR NEED. 509 00:21:26,769 --> 00:21:29,739 RIGHT NOW THE GOLD STANDARD FOR 510 00:21:29,739 --> 00:21:32,875 DIAGNOSIS INCLUDING LAPAROSCOPIC 511 00:21:32,875 --> 00:21:35,545 VISUALIZATION WHICH IS NOT, 512 00:21:35,545 --> 00:21:35,878 NON-INVASIVE. 513 00:21:35,878 --> 00:21:39,549 SO CLINICIANS RELY ON MEDICAL 514 00:21:39,549 --> 00:21:42,018 EXAM AND HISTORY AND SOME 515 00:21:42,018 --> 00:21:45,254 IMAGING BUT THESE TESTS AREN'T 516 00:21:45,254 --> 00:21:47,123 PERFECT AND DON'T DETECT ALL 517 00:21:47,123 --> 00:21:50,460 LESIONS ASSOCIATED WITH 518 00:21:50,460 --> 00:21:50,793 ENDOMETRIOSIS. 519 00:21:50,793 --> 00:22:01,337 THERE'S A MAJOR INNOVATION GAP. 520 00:22:05,441 --> 00:22:11,114 WE WANT TO DEVELOP EARLY AND 521 00:22:11,114 --> 00:22:13,282 ACCURATE ENDOMETRIOSIS TREATMENT 522 00:22:13,282 --> 00:22:18,154 AND AFFECTED PEOPLE WILL NOT BE 523 00:22:18,154 --> 00:22:19,122 WAITING AROUND SEVEN TO 10 524 00:22:19,122 --> 00:22:20,857 YEARS. 525 00:22:20,857 --> 00:22:23,059 IT DOESN'T DO ANYTHING AND THEN 526 00:22:23,059 --> 00:22:23,993 IT JUMPS. 527 00:22:23,993 --> 00:22:29,999 SO WHAT WE'RE PROPOSING IS A 528 00:22:29,999 --> 00:22:30,266 CHALLENGE. 529 00:22:30,266 --> 00:22:33,469 AND IT'S CALLED ACT-ENDO ACRONYM 530 00:22:33,469 --> 00:22:38,508 FOR ADVANCING CURES IN THERAPIES 531 00:22:38,508 --> 00:22:39,742 AND ENDING ENDOMETRIOSIS 532 00:22:39,742 --> 00:22:40,376 DIAGNOSTIC DELAYS. 533 00:22:40,376 --> 00:22:43,079 SO THE PROBLEM IS WE WANT TO 534 00:22:43,079 --> 00:22:45,848 REDUCE THE TIME TO DIAGNOSIS AND 535 00:22:45,848 --> 00:22:48,918 OUR SOLUTION, OUR POST-SOLUTION 536 00:22:48,918 --> 00:22:52,088 WILL BE TO PARTNER WITH NIBIB TO 537 00:22:52,088 --> 00:22:55,124 LEVERAGE THE RAPID ACCELERATION 538 00:22:55,124 --> 00:22:57,627 OF DIAGNOSTIC TECHNOLOGY. 539 00:22:57,627 --> 00:22:59,762 THIS IS THE RAD X TECH APPROACH 540 00:22:59,762 --> 00:23:01,464 USED SUCCESSFULLY TO DEVELOPED 541 00:23:01,464 --> 00:23:04,267 HOME-BASED TESTS FOR COVID. 542 00:23:04,267 --> 00:23:05,368 IT'S AN INNOVATION FUNNEL WHICH 543 00:23:05,368 --> 00:23:07,103 YOU'LL SEE IN THE NEXT SLIDE. 544 00:23:07,103 --> 00:23:09,906 AND THIS WILL HOPEFULLY 545 00:23:09,906 --> 00:23:12,041 ACCELERATE THE TIME TO 546 00:23:12,041 --> 00:23:13,609 DIAGNOSIS, ELIMINATE THE 547 00:23:13,609 --> 00:23:15,111 INVASIVENESS OF CURRENT 548 00:23:15,111 --> 00:23:17,213 TECHNIQUES AND IMPROVE 549 00:23:17,213 --> 00:23:17,747 ACCESSIBILITY, SAFETY, 550 00:23:17,747 --> 00:23:19,282 CONVENIENCE AND REDUCE THE COST 551 00:23:19,282 --> 00:23:22,785 OF DIAGNOSIS. 552 00:23:22,785 --> 00:23:28,491 SO THE INDIVIDUALS OR THE 553 00:23:28,491 --> 00:23:37,066 COMPANIES OR THE INSTITUTIONS 554 00:23:37,066 --> 00:23:40,803 WILL USE FLUIDS AND DISTINGUISH 555 00:23:40,803 --> 00:23:43,806 BETWEEN BENIGN AND MALIGNANT 556 00:23:43,806 --> 00:23:44,140 ENDOMETRIOSIS. 557 00:23:44,140 --> 00:23:47,143 PEOPLE WITH THIS HAVE AN 558 00:23:47,143 --> 00:23:50,580 INCREASED INCIDENTS OF CANCER 559 00:23:50,580 --> 00:23:58,554 AND UTILIZE EPI GENGENOMIC DATA 560 00:23:58,554 --> 00:24:00,089 DIAGNOSE EARLY DISEASE STATES. 561 00:24:00,089 --> 00:24:02,425 IT'S PHASED AND MEANT TO BE LIKE 562 00:24:02,425 --> 00:24:04,861 SHARK TANK IF YOU'RE OBSERVING 563 00:24:04,861 --> 00:24:08,130 AND YOU MAY SEE THE SHARK IN THE 564 00:24:08,130 --> 00:24:09,899 SLIDE, IT'S LIKE SHARK TANK AND 565 00:24:09,899 --> 00:24:15,137 EVENTUALLY THERE WILL BE A PHASE 566 00:24:15,137 --> 00:24:22,111 3 WITH INTERIM MILESTONES AND AT 567 00:24:22,111 --> 00:24:24,046 EACH PHASE THE GROUPS GET A 568 00:24:24,046 --> 00:24:25,348 FINANCIAL PRIZE. 569 00:24:25,348 --> 00:24:28,284 WE'RE GOING TO BE TALKING MORE 570 00:24:28,284 --> 00:24:29,519 ABOUT THE IMPROVE INITIATIVE IN 571 00:24:29,519 --> 00:24:31,120 SEPTEMBER ONCE THE ONGOING 572 00:24:31,120 --> 00:24:33,689 CHALLENGES ARE COMPLETED. 573 00:24:33,689 --> 00:24:36,025 BUT THOSE WHO HAVE BEEN ON 574 00:24:36,025 --> 00:24:45,935 COUNCIL BEFORE YOU'VE SEEN THIS 575 00:24:45,935 --> 00:24:48,037 GRAPHIC WITH THE SIX PARTS AND 576 00:24:48,037 --> 00:24:52,608 SET UP THE 10 CENTERS OF 577 00:24:52,608 --> 00:24:54,010 EXCELLENCE WITH THE DATA HUB AND 578 00:24:54,010 --> 00:24:54,977 IMPLEMENTATION SCIENCE HUB. 579 00:24:54,977 --> 00:25:02,552 THERE ARE TWO WHICH CHALLENGES. 580 00:25:02,552 --> 00:25:06,155 ONE IS RAD X FOR MATERNAL HEALTH 581 00:25:06,155 --> 00:25:10,526 AIMED AT IDENTIFYING POSTPARTUM 582 00:25:10,526 --> 00:25:12,061 WOMEN IN MATERNAL CARE DESERT 583 00:25:12,061 --> 00:25:15,131 AREAS WHO HAVE A PROBLEM. 584 00:25:15,131 --> 00:25:21,671 FOR EXAMPLE, POSTPARTUM 585 00:25:21,671 --> 00:25:23,873 HEMORRHAGE AND IDENTIFYING THOSE 586 00:25:23,873 --> 00:25:25,808 AT RISK FOR POSTPARTUM 587 00:25:25,808 --> 00:25:27,109 HEMORRHAGE AND GET THEM TO A 588 00:25:27,109 --> 00:25:28,711 PLACE TO BE TREATED? 589 00:25:28,711 --> 00:25:30,046 THAT CHALLENGE WILL BE COMPLETED 590 00:25:30,046 --> 00:25:32,515 IN OCTOBER AND THEN WE HAVE 591 00:25:32,515 --> 00:25:34,550 ANOTHER CHALLENGE THAT IS AIMED 592 00:25:34,550 --> 00:25:39,121 AT LOOKING AT COMMUNITY-BASED 593 00:25:39,121 --> 00:25:39,388 SOLUTIONS. 594 00:25:39,388 --> 00:25:45,294 SO, FOR EXAMPLE, HOW CAN THE USE 595 00:25:45,294 --> 00:25:51,133 OF DOULAS I AM -- IMPROVE 596 00:25:51,133 --> 00:25:52,301 MATERNAL HEALTH AND TEACHING 597 00:25:52,301 --> 00:25:53,769 COMMUNITY GROUPS HOW TO BE 598 00:25:53,769 --> 00:25:54,837 COMPETITIVE WITH OTHER GRANT 599 00:25:54,837 --> 00:25:55,972 OPPORTUNITIES AND THAT CHALLENGE 600 00:25:55,972 --> 00:25:57,873 WILL END IN SEPTEMBER. 601 00:25:57,873 --> 00:26:00,343 SO IN THE FALL WE WILL UPDATE 602 00:26:00,343 --> 00:26:04,447 YOU ON THE WINNERS AT LEAST IN 603 00:26:04,447 --> 00:26:11,120 THE COMMUNITY THAT'S PUBLICALLY 604 00:26:11,120 --> 00:26:12,054 ANNOUNCED. 605 00:26:12,054 --> 00:26:13,389 WE HAVE OTHER COMMUNITY 606 00:26:13,389 --> 00:26:14,590 IMPLEMENTATION PROGRAMS AS WELL 607 00:26:14,590 --> 00:26:16,959 AS THE CONNECTATHON DEVELOPING 608 00:26:16,959 --> 00:26:19,128 THE RECORD STANDARDS FOR 609 00:26:19,128 --> 00:26:26,669 PREGNANCY TO ALLOW REAL WORLD 610 00:26:26,669 --> 00:26:26,936 RESEARCH. 611 00:26:26,936 --> 00:26:28,871 SO LET'S GET TO PEDIATRICS NOW. 612 00:26:28,871 --> 00:26:31,107 THERE'S OVERLAP WITH THE 613 00:26:31,107 --> 00:26:31,374 BRANCHES. 614 00:26:31,374 --> 00:26:33,476 PEDIATRIC RESEARCH ENCOMPASSES 615 00:26:33,476 --> 00:26:36,445 THE DEVELOPMENTAL BIOLOGY AND 616 00:26:36,445 --> 00:26:37,947 ANOMALIES BRANCH. 617 00:26:37,947 --> 00:26:40,182 CHILD DEVELOPMENT AND BEHAVIOR, 618 00:26:40,182 --> 00:26:42,752 INTELLECTUAL AND DEVELOPMENTAL 619 00:26:42,752 --> 00:26:43,886 DISABILITIES, PEDIATRIC AND 620 00:26:43,886 --> 00:26:45,988 NUTRITION AND PEDIATRIC TRAUMA 621 00:26:45,988 --> 00:26:49,925 AND CLINICAL ILLNESS, MATERNAL 622 00:26:49,925 --> 00:26:51,460 AND PEDIATRIC INFECTIOUS 623 00:26:51,460 --> 00:26:53,896 DISEASES AND PHARMACOLOGY AND 624 00:26:53,896 --> 00:26:54,463 THERAPEUTICS AND POPULATION 625 00:26:54,463 --> 00:26:57,166 DYNAMICS. 626 00:26:57,166 --> 00:26:59,101 SO I MENTIONED THAT WE SUCCESS 627 00:26:59,101 --> 00:27:01,737 ANY HELD A WORKSHOP WITH THE 628 00:27:01,737 --> 00:27:02,538 PARTNERSHIP OF THE NATIONAL 629 00:27:02,538 --> 00:27:04,507 INSTITUTE OF MENTAL HEALTH ON 630 00:27:04,507 --> 00:27:06,175 THE IMPACT OF TECHNOLOGY AND 631 00:27:06,175 --> 00:27:08,744 DIGITAL MEDIA ON CHILD AND 632 00:27:08,744 --> 00:27:09,311 ADOLESCENT DEVELOPMENT AND 633 00:27:09,311 --> 00:27:11,013 MENTAL HEALTH. 634 00:27:11,013 --> 00:27:13,949 THIS IS A MAJOR ISSUE OF OUR 635 00:27:13,949 --> 00:27:16,318 TIME THAT WAS ONLY ACCELERATED 636 00:27:16,318 --> 00:27:20,623 BY THE PANDEMIC AND ONLINE 637 00:27:20,623 --> 00:27:20,890 LEARNING. 638 00:27:20,890 --> 00:27:23,492 IT WAS EXTREMELY WELL ATTENDED 639 00:27:23,492 --> 00:27:25,428 BOTH IN PERSON AND VIRTUALLY. 640 00:27:25,428 --> 00:27:29,065 THE WORKSHOP PARTICIPANTS 641 00:27:29,065 --> 00:27:30,266 DISCUSSED CURRENT STATE AND 642 00:27:30,266 --> 00:27:31,701 FUTURE DIRECTION OF RESEARCH THE 643 00:27:31,701 --> 00:27:34,203 POSITIVE AND NEGATIVE EFFECTS OF 644 00:27:34,203 --> 00:27:37,373 TECHNOLOGY AND DIGITAL MEDIA. 645 00:27:37,373 --> 00:27:41,911 THERE IS A RECORDING AVAILABLE 646 00:27:41,911 --> 00:27:44,046 AND WE ANTICIPATE THERE WILL BE 647 00:27:44,046 --> 00:27:45,948 A WHITE PAPER TYPE OF SUMMARY OF 648 00:27:45,948 --> 00:27:47,116 THE WORKSHOP AS WELL AND CLEARLY 649 00:27:47,116 --> 00:27:47,583 LEAD TO NEW RESEARCH 650 00:27:47,583 --> 00:27:50,386 OPPORTUNITIES. 651 00:27:50,386 --> 00:27:55,891 I DID WANT TO MENTION ALL OF US. 652 00:27:55,891 --> 00:27:58,027 ALL OF US WE'VE BEEN WAITING NOW 653 00:27:58,027 --> 00:27:59,729 FOR SIX YEARS TO HEAR WHEN ALL 654 00:27:59,729 --> 00:28:03,132 OF US WILL BE ENROLLING 655 00:28:03,132 --> 00:28:04,467 CHILDREN. 656 00:28:04,467 --> 00:28:05,868 THEY SAID LAST YEAR THAT THEIR 657 00:28:05,868 --> 00:28:10,906 NUMBER ONE GOAL WAS TO ENABLE 658 00:28:10,906 --> 00:28:11,407 PEDIATRIC PARTICIPATION. 659 00:28:11,407 --> 00:28:15,144 THEY HIRED DR. VANDREES FROM 660 00:28:15,144 --> 00:28:21,751 VANDERBILT WHO IS A PEDIATRICIAN 661 00:28:21,751 --> 00:28:24,286 TO TAKE THE LEAD IN ROLLING OUT 662 00:28:24,286 --> 00:28:29,325 OPPORTUNITIES FOR PEDIATRICS AND 663 00:28:29,325 --> 00:28:31,360 THEY ACCOMPLISHED QUITE A LOT IN 664 00:28:31,360 --> 00:28:34,363 2023 AND THEY RECRUITED A 665 00:28:34,363 --> 00:28:35,131 PEDIATRIC TEAM. 666 00:28:35,131 --> 00:28:37,767 THEY WROTE AND AMENDED A 667 00:28:37,767 --> 00:28:39,135 PEDIATRIC PROTOCOL. 668 00:28:39,135 --> 00:28:41,137 THEY GOT IRB APPROVAL FOR THE 669 00:28:41,137 --> 00:28:46,208 YOUNGEST OF THE CHILDREN WHO ARE 670 00:28:46,208 --> 00:28:47,109 LINKED TO THEIR MOTHERS SO 671 00:28:47,109 --> 00:28:51,113 THERE'S QUITE A NUMBER OF 672 00:28:51,113 --> 00:28:52,815 PREGNANT PEOPLE ENROLLED. 673 00:28:52,815 --> 00:28:54,416 THEY ADAPTED ALL THEIR 674 00:28:54,416 --> 00:28:57,119 TECHNOLOGY TO SUPPORT PEDIATRIC 675 00:28:57,119 --> 00:28:57,453 PARTICIPATION. 676 00:28:57,453 --> 00:28:58,888 THEY'RE WORKING ON SURVEYS THAT 677 00:28:58,888 --> 00:29:01,724 CAN BE GIVEN TO FAMILIES WHO ARE 678 00:29:01,724 --> 00:29:04,493 ALREADY PARTICIPATING IN ALL OF 679 00:29:04,493 --> 00:29:04,660 US. 680 00:29:04,660 --> 00:29:07,129 THEY'VE IDENTIFIED FIVE INITIAL 681 00:29:07,129 --> 00:29:12,935 SITES FOR RECRUITMENT. 682 00:29:12,935 --> 00:29:14,003 THEY TRAINED STAFF AND 683 00:29:14,003 --> 00:29:15,504 SUCCESSFULLY TESTED ALL THE 684 00:29:15,504 --> 00:29:15,738 SYSTEMS. 685 00:29:15,738 --> 00:29:17,573 THAT'S THE GOOD NEWS. 686 00:29:17,573 --> 00:29:21,577 THE BAD NEWS IS IN FISCAL YEAR 687 00:29:21,577 --> 00:29:24,713 '24 THEY TOOK AN ENORMOUS, $184 688 00:29:24,713 --> 00:29:35,090 MILLION CUT IN THEIR BUDGET. 689 00:29:35,090 --> 00:29:38,027 WHAT WILL BE THE RESULT OF THE 690 00:29:38,027 --> 00:29:38,894 BUDGET CUT. 691 00:29:38,894 --> 00:29:45,501 WE'RE WORKING WITH THEM WAYS TO 692 00:29:45,501 --> 00:29:46,836 IDENTIFY A SMALLER SCALE START 693 00:29:46,836 --> 00:29:51,106 TO PEDIATRIC ENROLLMENT. 694 00:29:51,106 --> 00:29:54,810 IT'S REALLY CRUCIAL. 695 00:29:54,810 --> 00:29:56,545 FULL DISCLOSURE ON THEIR 696 00:29:56,545 --> 00:29:57,913 EXECUTIVE COMMITTEE AND WE HEAR 697 00:29:57,913 --> 00:29:59,415 ABOUT THEIR ACCOMPLISHMENTS. 698 00:29:59,415 --> 00:30:02,518 THIS IS A PROGRAM THAT'S 699 00:30:02,518 --> 00:30:03,652 ACCOMPLISHED A HUGE AMOUNT. 700 00:30:03,652 --> 00:30:05,721 NOW THEY'RE IN A HOLDING PATTERN 701 00:30:05,721 --> 00:30:08,824 BECAUSE OF THE MAJOR BUDGET CUT. 702 00:30:08,824 --> 00:30:10,793 BUT I KNOW PEOPLE ASK ME ALL THE 703 00:30:10,793 --> 00:30:13,863 TIME WHEN IS ALL OF US GOING TO 704 00:30:13,863 --> 00:30:14,797 ENROLL CHILDREN AND THEY ARE 705 00:30:14,797 --> 00:30:17,766 READY TO GO. 706 00:30:17,766 --> 00:30:18,334 THEY'RE FINALLY READY TO GO. 707 00:30:18,334 --> 00:30:20,135 SO WE'RE WORKING WITH THEM TO 708 00:30:20,135 --> 00:30:23,205 SEE HOW WE CAN GO FORWARD IN 709 00:30:23,205 --> 00:30:29,378 THIS AREA. 710 00:30:29,378 --> 00:30:32,915 WE ALSO HAVE THE NIH WIDE 711 00:30:32,915 --> 00:30:33,749 PEDIATRIC CONSORTIUM ESTABLISHED 712 00:30:33,749 --> 00:30:38,187 IN 2018 TO INCREASE 713 00:30:38,187 --> 00:30:40,589 COLLABORATION, COORDINATION IN 714 00:30:40,589 --> 00:30:41,690 PEDIATRIC RESEARCH ACROSS NIH. 715 00:30:41,690 --> 00:30:45,427 THERE'S BEEN A NUMBER OF 716 00:30:45,427 --> 00:30:46,428 ACCOMPLISHMENTS THERE INCLUDING 717 00:30:46,428 --> 00:30:48,097 WORKSHOP ON THE TRANSITION FROM 718 00:30:48,097 --> 00:30:49,899 ADOLESCENT TO ADULT HEALTH CARE 719 00:30:49,899 --> 00:30:51,267 WHICH IS EXTREMELY IMPORTANT 720 00:30:51,267 --> 00:30:56,205 PARTICULARLY FOR ADOLESCENTS 721 00:30:56,205 --> 00:30:56,705 WITH CHRONIC DISEASE. 722 00:30:56,705 --> 00:30:58,007 THIS GROUP WAS VERY ACTIVE AT 723 00:30:58,007 --> 00:31:02,511 THE BEGINNING OF THE PANDEMIC TO 724 00:31:02,511 --> 00:31:04,380 IDENTIFY ISSUES UNIQUE TO BOTH 725 00:31:04,380 --> 00:31:11,120 CHILDREN AND PREGNANT PEOPLE BUT 726 00:31:11,120 --> 00:31:14,990 ACTUALLY WERE GOT FUNDING AND 727 00:31:14,990 --> 00:31:18,093 IDENTIFY COMMON DATA ELEMENTS. 728 00:31:18,093 --> 00:31:21,297 THE GROUP COLLABORATED WITH THE 729 00:31:21,297 --> 00:31:24,099 HEAL INITIATIVE TO ADDRESS 730 00:31:24,099 --> 00:31:27,937 PEDIATRIC PAIN. 731 00:31:27,937 --> 00:31:31,106 THEY'RE ALSO WORKING ON A 732 00:31:31,106 --> 00:31:31,907 STANDARDIZED APPROACH TO 733 00:31:31,907 --> 00:31:33,242 PEDIATRIC CLINICAL TRIAL. 734 00:31:33,242 --> 00:31:34,977 THE CRISIS IN THE PEDIATRIC 735 00:31:34,977 --> 00:31:36,078 WORKFORCE WE TALKED A LITTLE BIT 736 00:31:36,078 --> 00:31:37,046 ABOUT AT THE LAST COUNCIL 737 00:31:37,046 --> 00:31:38,280 MEETING WAS ALSO A TOPIC OF 738 00:31:38,280 --> 00:31:41,583 DISCUSSION FOR THE GROUP. 739 00:31:41,583 --> 00:31:46,121 AND ALSO PEDIATRIC MEDICAL 740 00:31:46,121 --> 00:31:51,760 DEVICES WHICH IS A 741 00:31:51,760 --> 00:31:52,661 PUBLIC-PRIVATE PARTNERSHIP AND 742 00:31:52,661 --> 00:31:54,964 WE HAVE MULTIPLE OTHER NIH 743 00:31:54,964 --> 00:31:57,433 PARTNERS INCLUDING NIBIB AND 744 00:31:57,433 --> 00:31:59,668 OTHER FEDERAL PARTNERS INCLUDING 745 00:31:59,668 --> 00:32:01,070 BARDA AND THE FDA. 746 00:32:01,070 --> 00:32:03,238 THIS IS WHAT WITH THE SUPPORT OF 747 00:32:03,238 --> 00:32:04,907 THE FOUNDATION FOR NIH THE 748 00:32:04,907 --> 00:32:07,443 AMERICAN ACADEMY OF PEDIATRICS 749 00:32:07,443 --> 00:32:11,113 AND VARIOUS ACADEMIC 750 00:32:11,113 --> 00:32:15,818 INSTITUTIONS, CHILDREN'S 751 00:32:15,818 --> 00:32:22,691 HOSPITALS, PHARMACEUTICAL 752 00:32:22,691 --> 00:32:24,159 COMPANIES AND LOOK AT DEVICES 753 00:32:24,159 --> 00:32:27,129 EVALUATED AND APPROVED FOR 754 00:32:27,129 --> 00:32:28,030 PEDIATRIC POPULATIONS. 755 00:32:28,030 --> 00:32:30,132 IT'S ALSO AIMED TO DERISK AND 756 00:32:30,132 --> 00:32:32,368 STREAMLINE PROCESSES ENABLING 757 00:32:32,368 --> 00:32:33,569 TRANSLATION OF MEDICAL ADVANCES 758 00:32:33,569 --> 00:32:35,170 FROM THE BENCH TO BEDSIDE AND 759 00:32:35,170 --> 00:32:37,106 FOR MEDICAL DEVICES FOR CHILDREN 760 00:32:37,106 --> 00:32:43,112 WHICH IS REALLY AN UNMET NEED SO 761 00:32:43,112 --> 00:32:46,448 I WOULD LIKE TO ACKNOWLEDGE THE 762 00:32:46,448 --> 00:32:48,117 OBSTETRIC AND PEDIATRIC 763 00:32:48,117 --> 00:32:49,518 THERAPEUTICS BRANCH THAT HAS 764 00:32:49,518 --> 00:32:51,553 TAKEN A LEADERSHIP APPROACH TO 765 00:32:51,553 --> 00:32:53,489 MOVING THIS FORWARD. 766 00:32:53,489 --> 00:32:54,790 SO YOU'LL HEAR MORE ABOUT THIS 767 00:32:54,790 --> 00:32:55,391 IN THE FUTURE. 768 00:32:55,391 --> 00:33:01,864 AND THEN I DID WANT TO MENTION 769 00:33:01,864 --> 00:33:07,136 WE HAVE A NEW DIRECTOR OF NIH, 770 00:33:07,136 --> 00:33:08,637 DR. BERTAGNOLLI. 771 00:33:08,637 --> 00:33:11,540 AND I CAN PRONOUNCE IN ITALIAN 772 00:33:11,540 --> 00:33:12,875 LAST NAME BECAUSE I HAVE ONE 773 00:33:12,875 --> 00:33:17,212 MYSELF BUT IF YOU WATCHED THE 774 00:33:17,212 --> 00:33:18,881 SENATE HEARING YOU'D KNOW MANY 775 00:33:18,881 --> 00:33:21,483 SENATORS HAVE DIFFICULTY WITH 776 00:33:21,483 --> 00:33:23,152 ITALIAN LAST NAMES AND I WON'T 777 00:33:23,152 --> 00:33:25,988 SAY MORE BUT IT CAME UP MANY 778 00:33:25,988 --> 00:33:26,188 TIMES. 779 00:33:26,188 --> 00:33:28,123 ONE OF DR. BERTAGNOLLI'S 780 00:33:28,123 --> 00:33:35,130 PRIORITIES IS TO DEVELOP A 781 00:33:35,130 --> 00:33:40,469 PRIMARY CARE CLINICAL TRIAL 782 00:33:40,469 --> 00:33:40,969 NETW 783 00:33:40,969 --> 00:33:41,670 NETWORK. 784 00:33:41,670 --> 00:33:43,138 SHE'S ORIGINALLY FROM A RURAL 785 00:33:43,138 --> 00:33:45,707 AREA IN WYOMING. 786 00:33:45,707 --> 00:33:48,143 SHE UNDERSTANDS THE NEEDS OF 787 00:33:48,143 --> 00:33:49,645 RURAL POPULATIONS AND IT IS 788 00:33:49,645 --> 00:33:52,748 FOCUS FOR HER TO USE PRIMARY 789 00:33:52,748 --> 00:33:56,418 CARE AS AN OPPORTUNITY TO DO 790 00:33:56,418 --> 00:33:58,420 RESEARCH THAT'S DISEASE 791 00:33:58,420 --> 00:33:58,687 AGNOSTIC. 792 00:33:58,687 --> 00:34:00,956 THIS IS SOMETHING THAT INCLUDES 793 00:34:00,956 --> 00:34:05,761 ALL THE INSTITUTES AND CENTERS 794 00:34:05,761 --> 00:34:07,129 AND USES REAL WORLD SETTINGS. 795 00:34:07,129 --> 00:34:10,099 IT'S CREATING A FOUNDATION FOR 796 00:34:10,099 --> 00:34:12,134 ENGAGEMENT WITH COMMUNITIES THAT 797 00:34:12,134 --> 00:34:15,137 ARE UNDER REPRESENTED IN 798 00:34:15,137 --> 00:34:16,605 CLINICAL RESEARCH. 799 00:34:16,605 --> 00:34:19,141 THIS COULD INCLUDE RURAL AND 800 00:34:19,141 --> 00:34:22,277 URBAN AREAS UNDER SERVED. 801 00:34:22,277 --> 00:34:25,614 HER OFFICE, THE OFFICE OF THE 802 00:34:25,614 --> 00:34:28,517 DIRECTOR WILL GET INITIAL 803 00:34:28,517 --> 00:34:30,152 FUNDING ASPIRATIONAL $25 MILLION 804 00:34:30,152 --> 00:34:32,688 IN FISCAL '25 BUT CONGRESS HAS 805 00:34:32,688 --> 00:34:35,991 TO APPROPRIATE THAT AND THEY'RE 806 00:34:35,991 --> 00:34:37,159 ANTICIPATING A RAMP UP ASSUMING 807 00:34:37,159 --> 00:34:41,930 THEY CAN MOVE FORWARD. 808 00:34:41,930 --> 00:34:45,033 THEY'RE MOVING VERY QUICKLY 809 00:34:45,033 --> 00:34:46,735 BECAUSE HER POSITION IS A 810 00:34:46,735 --> 00:34:47,402 POLITICAL APPOINTMENT. 811 00:34:47,402 --> 00:34:49,638 SO IF THERE ARE CHANGES THEN 812 00:34:49,638 --> 00:34:51,106 IT'S UNCLEAR WHAT WOULD HAPPEN 813 00:34:51,106 --> 00:34:56,178 TO THIS PROGRAM. 814 00:34:56,178 --> 00:34:57,779 SO THEY ARE ALREADY HAVING 815 00:34:57,779 --> 00:35:00,082 LISTENING SESSIONS AND GATHERING 816 00:35:00,082 --> 00:35:01,917 FEEDBACK AND WANT TO LAUNCH THIS 817 00:35:01,917 --> 00:35:05,621 BEFORE THE END OF THIS FISCAL 818 00:35:05,621 --> 00:35:06,421 AND ALREADY HAVE INTERIM TEAMS 819 00:35:06,421 --> 00:35:16,598 IN PLACE. 820 00:35:18,167 --> 00:35:23,906 TWO MORE THINGS IN THE AREA. 821 00:35:23,906 --> 00:35:28,877 YOU'RE AWARE OF THE FACT THAT ON 822 00:35:28,877 --> 00:35:30,846 YOUR GRANTS THE STIPENDS ARE 823 00:35:30,846 --> 00:35:32,981 GOING TO BE RAISED BY AROUND 4% 824 00:35:32,981 --> 00:35:35,817 FOR PREDOCTORAL TRAINEES AND 825 00:35:35,817 --> 00:35:39,354 AROUND 8% FOR POST-DOCTORAL 826 00:35:39,354 --> 00:35:41,823 SCHOLARS IN THIS FISCAL YEAR. 827 00:35:41,823 --> 00:35:42,958 THIS IS VERY SUBSTANTIAL. 828 00:35:42,958 --> 00:35:45,527 IT'S IN RESPONSE TO A NUMBER OF 829 00:35:45,527 --> 00:35:46,628 DIFFERENT EFFORTS REALLY 830 00:35:46,628 --> 00:35:52,167 ATTEMPTING TO GIVE TRAINEES A 831 00:35:52,167 --> 00:35:53,535 LIVING WAGE. 832 00:35:53,535 --> 00:35:55,337 THE DIRECTORS WEIGHED IN ON 833 00:35:55,337 --> 00:35:57,539 THREE DIFFERENT PLANS AND 834 00:35:57,539 --> 00:35:59,274 SELECTED THIS CURRENT PLAN THAT 835 00:35:59,274 --> 00:36:02,211 WOULD ALLOW FOR IMMEDIATE PAY 836 00:36:02,211 --> 00:36:04,746 INCREASE WITHOUT DRASTIC CUTS IN 837 00:36:04,746 --> 00:36:10,419 THE NUMBER OF NRSA AWARDS THOUGH 838 00:36:10,419 --> 00:36:13,622 TO GIVE -- THE PIE'S NOT GETTING 839 00:36:13,622 --> 00:36:15,057 BIGGER SO TO GIVE INDIVIDUAL 840 00:36:15,057 --> 00:36:17,793 TRAINEES A HIGHER SALARY WE 841 00:36:17,793 --> 00:36:19,094 ANTICIPATE HAVING TO REDUCE 842 00:36:19,094 --> 00:36:23,432 SLIGHTLY THE NUMBER OF 843 00:36:23,432 --> 00:36:24,166 POSITIONS. 844 00:36:24,166 --> 00:36:27,269 OUR GOAL IS TO REACH THE 845 00:36:27,269 --> 00:36:29,705 ADVISORY TO THE DIRECTORS 846 00:36:29,705 --> 00:36:32,741 RECOMMENDED STIPEND LEVEL AROUND 847 00:36:32,741 --> 00:36:35,177 $70,000 IT'S FOR POST DOCTORAL 848 00:36:35,177 --> 00:36:37,913 FELLOWS IN THE COMING YEARS AND 849 00:36:37,913 --> 00:36:40,716 THE CHILDCARE SUBSIDY INCREASED 850 00:36:40,716 --> 00:36:44,786 TO $3,000 THIS FISCAL YEAR PER 851 00:36:44,786 --> 00:36:47,889 TRAINEE SO IF YOU DO HAVE A 852 00:36:47,889 --> 00:36:51,126 COUPLE, EACH ONE OF THEM WOULD 853 00:36:51,126 --> 00:36:56,565 HAVE THE $3,000. 854 00:36:56,565 --> 00:36:57,833 THE OTHER CHANGE THAT IS 855 00:36:57,833 --> 00:36:59,134 OCCURRING -- I JUST PICKED THREE 856 00:36:59,134 --> 00:37:01,637 OVER ALL HIGHLIGHTS TO BRING TO 857 00:37:01,637 --> 00:37:04,373 YOUR ATTENTION EXISTING REVIEW 858 00:37:04,373 --> 00:37:07,109 CRITERIA ARE GOING TO BE 859 00:37:07,109 --> 00:37:08,577 RE-ORGANIZED INTO THREE FACTORS. 860 00:37:08,577 --> 00:37:10,879 THESE CHANGES ARE GOING TO TAKE 861 00:37:10,879 --> 00:37:14,650 PLACE FOR APPLICATIONS SUBMITTED 862 00:37:14,650 --> 00:37:17,586 IN JANUARY OF '25. 863 00:37:17,586 --> 00:37:19,121 THE INVESTIGATOR AND ENVIRONMENT 864 00:37:19,121 --> 00:37:22,257 ARE GOING TO BE EVALUATED AS 865 00:37:22,257 --> 00:37:24,159 SUFFICIENT FOR GAPS IDENTIFIED. 866 00:37:24,159 --> 00:37:26,128 THEY WILL NOT BE INDIVIDUAL 867 00:37:26,128 --> 00:37:29,197 SCORES ANYMORE IN THAT CATEGORY. 868 00:37:29,197 --> 00:37:35,404 IT WILL BE CONSIDERED THE OVER 869 00:37:35,404 --> 00:37:38,440 ALL SCORE AND THERE'LL BE HUMAN 870 00:37:38,440 --> 00:37:42,210 TIME LINE, SUBJECTS GOING TO BE 871 00:37:42,210 --> 00:37:43,478 EVALUATED FOR A MORE RIGOROUS 872 00:37:43,478 --> 00:37:46,581 REVIEW AND I'M SORRY TO OUR 873 00:37:46,581 --> 00:37:49,051 NICHD STAFF, MANY OF THESE 874 00:37:49,051 --> 00:37:52,287 CHANGES WILL FALL ON THE 875 00:37:52,287 --> 00:37:53,488 SHOULDERS OF THE NIH STAFF 876 00:37:53,488 --> 00:38:03,999 RATHER THAN THE STUDY SECTION. 877 00:38:05,367 --> 00:38:07,135 THE GOAL IS IT TO IDENTIFY THE 878 00:38:07,135 --> 00:38:17,546 HIGHEST IMPACT RESEARCH. 879 00:38:17,879 --> 00:38:19,448 I WANTED TO ACKNOWLEDGE 880 00:38:19,448 --> 00:38:24,219 DR. STORRS ELECTED AS AN AAAS 881 00:38:24,219 --> 00:38:29,157 FELLOW LEADING THE ENVIRONMENTAL 882 00:38:29,157 --> 00:38:32,761 GENE REGULATION SECTION AND 883 00:38:32,761 --> 00:38:35,130 HONORED FOR THE FIELD OF 884 00:38:35,130 --> 00:38:44,272 MICROBIOLOGY AND NON-CODING RNAs 885 00:38:44,272 --> 00:38:47,109 AND OXIDATIVE RESPONSE IN YEAST. 886 00:38:47,109 --> 00:38:50,445 WE TEND TO DEVOTE OUR COUNCIL 887 00:38:50,445 --> 00:38:51,446 MEETING TO THE INTRAMURAL 888 00:38:51,446 --> 00:38:54,182 PROGRAM AND IT'S A TREMENDOUS 889 00:38:54,182 --> 00:38:55,117 HONOR. 890 00:38:55,117 --> 00:38:57,352 AND THEN WE HAVE TWO NEW 891 00:38:57,352 --> 00:39:03,125 INSTITUTE AND CENTER DIRECTORS. 892 00:39:03,125 --> 00:39:05,794 SO I'VE BEEN AT NIH SEVEN AND A 893 00:39:05,794 --> 00:39:08,063 HALF YEARS AND THERE'S BEEN A 894 00:39:08,063 --> 00:39:08,730 LOT OF CHANGE. 895 00:39:08,730 --> 00:39:11,333 WE HAVE QUITE A NUMBER OF NEW 896 00:39:11,333 --> 00:39:13,869 INSTITUTE CENTER DIRECTORS BUT 897 00:39:13,869 --> 00:39:15,137 THE NEWEST INCLUDE DR. SEAN 898 00:39:15,137 --> 00:39:19,141 MOONEY AT THE CENTER FOR 899 00:39:19,141 --> 00:39:20,742 INFORMATION TECHNOLOGY. 900 00:39:20,742 --> 00:39:23,145 DR. CANNY NEUZIL THE DIRECTOR OF 901 00:39:23,145 --> 00:39:28,483 THE FOGARTY INTERNATIONAL 902 00:39:28,483 --> 00:39:28,917 CENTER. 903 00:39:28,917 --> 00:39:31,119 DR. MOONEY IS FROM THE 904 00:39:31,119 --> 00:39:36,191 UNIVERSITY OF WASHINGTON AS IS 905 00:39:36,191 --> 00:39:42,164 DR. SIMONI AND THE DIRECTOR OF 906 00:39:42,164 --> 00:39:43,598 THE NATIONAL LIBRARY OF MEDICINE 907 00:39:43,598 --> 00:39:47,135 POSITION IS NOW POSTED. 908 00:39:47,135 --> 00:39:50,839 SO PATTI BRENNAN RETIRED AND 909 00:39:50,839 --> 00:39:53,208 THAT SEARCH IS ONGOING. 910 00:39:53,208 --> 00:39:55,977 WE EXPECT THAT SOME TIME IN THE 911 00:39:55,977 --> 00:39:57,345 NEXT FEW MONTHS THAT THE SEARCH 912 00:39:57,345 --> 00:39:58,547 FOR THE NEW DIRECTOR OF THE 913 00:39:58,547 --> 00:40:02,217 NATIONAL INSTITUTE OF MENTAL 914 00:40:02,217 --> 00:40:04,820 HEALTH WILL START UP AS WELL. 915 00:40:04,820 --> 00:40:08,089 SO DR. GORDON SHORTLY IS LEAVING 916 00:40:08,089 --> 00:40:12,160 NIH TO BE CHAIR OF PSYCHIATRY AT 917 00:40:12,160 --> 00:40:13,028 COLUMBIA UNIVERSITY. 918 00:40:13,028 --> 00:40:14,229 WE ARE HIRING AS USUAL. 919 00:40:14,229 --> 00:40:16,064 WE'RE HAPPY AND I KNOW OUR STAFF 920 00:40:16,064 --> 00:40:20,302 ARE ALL HAPPY TO TALK WITH YOU 921 00:40:20,302 --> 00:40:23,205 SHOULD YOU HAVE KNOWLEDGE OF 922 00:40:23,205 --> 00:40:25,607 PEOPLE WHO WANT TO EXPLORE A 923 00:40:25,607 --> 00:40:26,274 STINT IN GOVERNMENT. 924 00:40:26,274 --> 00:40:27,909 THERE'S MANY ADVANTAGES TO IT. 925 00:40:27,909 --> 00:40:33,748 WE ALSO ARE LOOKING FOR GREAT 926 00:40:33,748 --> 00:40:38,019 SCIENTI 927 00:40:38,019 --> 00:40:40,489 SCIENTISTS WHOA CAN WORK IN OUR 928 00:40:40,489 --> 00:40:42,157 PROGRAM AND THAT'S THE END OF MY 929 00:40:42,157 --> 00:40:44,326 FORMAL REMARKS AND WE HAVE A QR 930 00:40:44,326 --> 00:40:44,526 CODE. 931 00:40:44,526 --> 00:40:49,898 THE OFFICE OF COMMUNICATIONS HAS 932 00:40:49,898 --> 00:40:51,433 CREATED SOME FANTASTIC 933 00:40:51,433 --> 00:40:53,602 ONE-PAGERS ON A VARIETY OF 934 00:40:53,602 --> 00:40:55,203 TOPICS RELATED TO WOMEN'S HEALTH 935 00:40:55,203 --> 00:40:57,606 AND THEY'VE BEEN POPULAR IN OUR 936 00:40:57,606 --> 00:40:58,807 CONGRESSIONAL MEETINGS AND GIVE 937 00:40:58,807 --> 00:41:00,575 A SUMMARY OF WHAT WE'RE FUNDING 938 00:41:00,575 --> 00:41:03,745 IN A PARTICULAR AREA SAY 939 00:41:03,745 --> 00:41:10,452 ENDOMETRIOSIS OR POLY CYSTIC 940 00:41:10,452 --> 00:41:19,895 OVARY SYNDROME TALK ABOUT OUR 941 00:41:19,895 --> 00:41:27,135 ACHIEVEMENTS AND WHAT ISSUES 942 00:41:27,135 --> 00:41:34,876 ARE. 943 00:41:34,876 --> 00:41:37,379 >> THANK YOU FOR WHAT YOU DO AND 944 00:41:37,379 --> 00:41:43,118 THE WHOLE PORTFOLIO IS REALLY 945 00:41:43,118 --> 00:41:51,893 EXCITING TO SEE WHEN YOU SEE 946 00:41:51,893 --> 00:41:52,827 WHAT WE CAN DO. 947 00:41:52,827 --> 00:41:56,898 THE ALL OF US I CALL SOME OF US 948 00:41:56,898 --> 00:41:59,267 WAS WE'RE MISSING A PART OF THE 949 00:41:59,267 --> 00:42:00,368 POPULATION IS IMPORTANT FOR NIH 950 00:42:00,368 --> 00:42:03,171 TO GET BEHIND AND WE HAVE 951 00:42:03,171 --> 00:42:06,341 RECOGNIZE THERE'S A FINITE POT 952 00:42:06,341 --> 00:42:07,275 OF MONEY. 953 00:42:07,275 --> 00:42:09,477 I WANTED TO HEAR THOUGHTS AND 954 00:42:09,477 --> 00:42:11,880 HOW WE CAN HELP PRIORITIZE THIS. 955 00:42:11,880 --> 00:42:13,181 SO MUCH HAS BEEN INVESTED IN ALL 956 00:42:13,181 --> 00:42:15,884 OF US AND THERE'S A GREAT 957 00:42:15,884 --> 00:42:17,452 OPPORTUNITY TO REALLY ENSURE A 958 00:42:17,452 --> 00:42:18,386 BENEFIT FROM THAT AS WELL. 959 00:42:18,386 --> 00:42:23,758 >> I AGREE 100%. 960 00:42:23,758 --> 00:42:26,828 I'VE WANTED TO PRESENT THAT 961 00:42:26,828 --> 00:42:27,028 SLIDE. 962 00:42:27,028 --> 00:42:28,563 WE'VE DONE AN ENORMOUS AMOUNT 963 00:42:28,563 --> 00:42:31,866 AND SET UP THE STRUCTURE FOR THE 964 00:42:31,866 --> 00:42:32,968 CHILDREN AND THEY HAVE ALREADY 965 00:42:32,968 --> 00:42:34,102 ACCOMPLISHED A NUMBER OF THINGS 966 00:42:34,102 --> 00:42:36,705 FOR ADULTS AS WELL. 967 00:42:36,705 --> 00:42:41,910 SO I THINK REALLY THE HELP CAN 968 00:42:41,910 --> 00:42:44,179 COME FROM SPEAKING ABOUT US 969 00:42:44,179 --> 00:42:52,320 BECAUSE MOST OF THE BUDGET IS 970 00:42:52,320 --> 00:42:55,123 FLAT THERE'S A SLIGHT INCREASE 971 00:42:55,123 --> 00:42:56,124 IN THE IMPROV INITIATIVE. 972 00:42:56,124 --> 00:42:58,393 THE CUTS CAME AT THE EXPENSE OF 973 00:42:58,393 --> 00:43:02,764 BIG PROGRAMS LIKE THE BRAIN 974 00:43:02,764 --> 00:43:04,766 INITIATIVE AND ALL OF US. 975 00:43:04,766 --> 00:43:07,102 I THINK CONGRESS NEEDS TO BE 976 00:43:07,102 --> 00:43:11,139 MADE AWARE OF WHAT THEY'VE 977 00:43:11,139 --> 00:43:11,873 ALREADY ACCOMPLISHED. 978 00:43:11,873 --> 00:43:19,314 AND WE COULD NEVER MAKE UP $100 979 00:43:19,314 --> 00:43:19,581 MILLION. 980 00:43:19,581 --> 00:43:21,616 THEY'RE TRYING TO GET SMALLISH 981 00:43:21,616 --> 00:43:22,317 CONTRIBUTIONS FROM THE 982 00:43:22,317 --> 00:43:24,452 INSTITUTES AND CENTERS. 983 00:43:24,452 --> 00:43:26,788 NOW, WE DON'T FUND ALL PEDIATRIC 984 00:43:26,788 --> 00:43:27,455 RESEARCH. 985 00:43:27,455 --> 00:43:30,258 WE ONLY FUND 16% PEDIATRIC 986 00:43:30,258 --> 00:43:30,992 RESEARCH. 987 00:43:30,992 --> 00:43:33,728 BUT WE HAVE BEEN VERY COMMITTED 988 00:43:33,728 --> 00:43:43,705 TO ALL OF US FROM THE GET GO AND 989 00:43:43,705 --> 00:43:45,106 UNDERSTAND THE IMPORTANCE OF 990 00:43:45,106 --> 00:43:47,108 CHILDREN AND IF THERE'S ONE 991 00:43:47,108 --> 00:43:49,210 PIECE OF ADVICE, TRY TO 992 00:43:49,210 --> 00:43:50,145 COMMUNICATE WITH YOUR CONGRESS 993 00:43:50,145 --> 00:43:50,779 PEOPLE ABOUT THE IMPORTANCE OF 994 00:43:50,779 --> 00:43:52,147 THE PROGRAM AND HOW IT BENEFITS 995 00:43:52,147 --> 00:43:54,582 CHILDREN AND ADULTS AND IN 996 00:43:54,582 --> 00:43:58,019 PARTICULAR THE FACT THEY HAVE 997 00:43:58,019 --> 00:43:58,853 RECRUITED SUBSTANTIAL PERCENTAGE 998 00:43:58,853 --> 00:43:59,954 OF UNDER REPRESENTED MINORITIES. 999 00:43:59,954 --> 00:44:01,489 THAT WAS A GOAL FROM THE 1000 00:44:01,489 --> 00:44:01,756 BEGINNING. 1001 00:44:01,756 --> 00:44:04,392 >> IS THIS AN OPPORTUNITY THEN 1002 00:44:04,392 --> 00:44:05,827 FOR THE NIH PEDIATRIC CONSORTIUM 1003 00:44:05,827 --> 00:44:08,396 TO WORK TOGETHER ON THAT? 1004 00:44:08,396 --> 00:44:11,132 >> WE'VE ALWAYS WORKED TOGETHER 1005 00:44:11,132 --> 00:44:16,738 AND SARA van DREES IS A MEMBER 1006 00:44:16,738 --> 00:44:18,273 AND JUST SPOKE RECENTLY WHAT HAS 1007 00:44:18,273 --> 00:44:21,543 BEEN ACCOMPLISHED TO THE WHOLE 1008 00:44:21,543 --> 00:44:23,878 GROUP.MARCEL, DID YOU HAVE A 1009 00:44:23,878 --> 00:44:24,145 QUESTION? 1010 00:44:24,145 --> 00:44:25,580 >> THANK YOU. 1011 00:44:25,580 --> 00:44:27,649 THAT WAS VERY HELPFUL AND 1012 00:44:27,649 --> 00:44:27,949 INFORMATIVE. 1013 00:44:27,949 --> 00:44:29,517 I HAD A QUESTION. 1014 00:44:29,517 --> 00:44:33,054 FIRST, IT'S GREAT THE STIPENDS 1015 00:44:33,054 --> 00:44:34,756 ARE GOING TO BE INCREASED 1016 00:44:34,756 --> 00:44:35,690 BECAUSE THERE'S CLEARLY AN ISSUE 1017 00:44:35,690 --> 00:44:37,158 IN THE RESEARCH PIPELINE. 1018 00:44:37,158 --> 00:44:40,829 I WANTED TO CLARIFY IF I HEARD 1019 00:44:40,829 --> 00:44:42,063 CORRECTLY BECAUSE IT'S OBVIOUSLY 1020 00:44:42,063 --> 00:44:46,134 A FIXED BUDGET AND THE BUDGET'S 1021 00:44:46,134 --> 00:44:51,840 NOT BETTGETTING BIGGER. 1022 00:44:51,840 --> 00:44:54,375 DOES IT MEAN LESS POSITIONS WILL 1023 00:44:54,375 --> 00:44:55,944 BE FUNDED? 1024 00:44:55,944 --> 00:44:59,380 >> NOT PHYSICIANS, I SAID 1025 00:44:59,380 --> 00:45:00,415 POSITIONS. 1026 00:45:00,415 --> 00:45:01,883 WE'RE SUBMITTED TO PHYSICIAN 1027 00:45:01,883 --> 00:45:02,684 SCIENTISTS. 1028 00:45:02,684 --> 00:45:06,988 BUT IT'S SIMPLE MATH. 1029 00:45:06,988 --> 00:45:08,757 WE HAVE A FIXED BUDGET. 1030 00:45:08,757 --> 00:45:09,791 TRAINING PROGRAM DIRECTORS WILL 1031 00:45:09,791 --> 00:45:11,126 HAVE TO MAKE DECISIONS HOW TO 1032 00:45:11,126 --> 00:45:15,430 USE THE BUDGETS. 1033 00:45:15,430 --> 00:45:18,399 OTHER QUESTIONS? 1034 00:45:18,399 --> 00:45:21,503 >> I HAD A QUESTION. 1035 00:45:21,503 --> 00:45:23,805 THIS IS DR. CHANCE. 1036 00:45:23,805 --> 00:45:25,273 REGARDING THE $12 MILLION 1037 00:45:25,273 --> 00:45:27,041 PROPOSED FOR THE WOMEN'S HEALTH 1038 00:45:27,041 --> 00:45:28,943 RESEARCH INITIATIVE, MY QUESTION 1039 00:45:28,943 --> 00:45:30,512 IS HOW MUCH OF THE BUDGET IS 1040 00:45:30,512 --> 00:45:35,049 CURRENTLY USED FOR WOMEN'S 1041 00:45:35,049 --> 00:45:35,784 HEALTH AT NIH? 1042 00:45:35,784 --> 00:45:37,952 JUST TO UNDERSTAND WHAT THE 1043 00:45:37,952 --> 00:45:38,419 BUDGET MEANS. 1044 00:45:38,419 --> 00:45:42,390 >> SO I WISH I COULD GIVE YOU A 1045 00:45:42,390 --> 00:45:42,924 STRAIGHTFORWARD ANSWER. 1046 00:45:42,924 --> 00:45:46,728 THAT'S A MAJOR TOPIC OF 1047 00:45:46,728 --> 00:45:48,930 DISCUSSION BECAUSE THERE IS A 1048 00:45:48,930 --> 00:45:52,500 PERCEPTION THAT NIH IS NOT 1049 00:45:52,500 --> 00:45:56,171 FUNDING WOMEN'S HEALTH RESEARCH. 1050 00:45:56,171 --> 00:46:00,175 SO EXCLUSIVELY IT'S SOMEWHERE 1051 00:46:00,175 --> 00:46:04,579 BETWEEN $4 BILLION AND $5 1052 00:46:04,579 --> 00:46:08,449 BILLION BUT WOMEN ARE BEING 1053 00:46:08,449 --> 00:46:09,918 STUDIED IN MANY AREAS ALONG WITH 1054 00:46:09,918 --> 00:46:15,123 MEN SO THEY'RE NOT BREAKING OUT 1055 00:46:15,123 --> 00:46:19,194 THOSE GRANTS, FOR EXAMPLE. 1056 00:46:21,529 --> 00:46:23,865 SO, WE'RE TRYING TO GET A BETTER 1057 00:46:23,865 --> 00:46:25,300 HANDLE ON HOW WE'RE SUPPORTING 1058 00:46:25,300 --> 00:46:26,401 WOMEN'S HEALTH RESEARCH AND PART 1059 00:46:26,401 --> 00:46:31,105 OF THAT WILL COME FROM PROGRAMS 1060 00:46:31,105 --> 00:46:38,313 NEW TOPICS IN THE RCDC CATEGORY 1061 00:46:38,313 --> 00:46:40,849 TO BETTER MONITOR TRENDS. 1062 00:46:40,849 --> 00:46:41,749 NOW, REMEMBER THAT EVEN 1063 00:46:41,749 --> 00:46:44,185 SOMETHING AS COMMON AS PREGNANCY 1064 00:46:44,185 --> 00:46:49,290 DID NOT HAVE A CATEGORY IN THE 1065 00:46:49,290 --> 00:46:51,593 RESEARCH CONDITION AND DISEASE 1066 00:46:51,593 --> 00:46:51,960 CATEGORIZATION. 1067 00:46:51,960 --> 00:46:55,063 THAT'S RCDC A PUBLIC RESOURCE 1068 00:46:55,063 --> 00:46:59,067 YOU CAN LOOK UP AND TRACK THE 1069 00:46:59,067 --> 00:46:59,467 AMOUNT OF FUNDING. 1070 00:46:59,467 --> 00:47:02,237 THE PREGNANCY WASN'T EVEN A 1071 00:47:02,237 --> 00:47:04,405 CATEGORY UNTIL 2017. 1072 00:47:04,405 --> 00:47:07,642 SO IT WAS VERY HARD TO KNOW HOW 1073 00:47:07,642 --> 00:47:08,977 MUCH NIH WAS SPENDING OVER ALL 1074 00:47:08,977 --> 00:47:11,946 ON PREGNANCY. 1075 00:47:11,946 --> 00:47:15,116 SO AS ONE ASPECT OF THIS WHOLE 1076 00:47:15,116 --> 00:47:16,851 OVER ALL INITIATIVE THEY'RE 1077 00:47:16,851 --> 00:47:21,823 LOOKING AT CATEGORIES TO BETTER 1078 00:47:21,823 --> 00:47:24,425 DOCUMENT WHAT'S BEING SPENT. 1079 00:47:24,425 --> 00:47:27,161 $4 BILLION TO $5 BILLION FOR 1080 00:47:27,161 --> 00:47:28,830 CURRENT HEALTH RESEARCH. 1081 00:47:28,830 --> 00:47:32,901 AND THERE'S DISCUSSIONS WITH OUR 1082 00:47:32,901 --> 00:47:35,103 COLLEAGUES ABOUT WHAT TO INCLUDE 1083 00:47:35,103 --> 00:47:38,273 IN THE DEFINITION OF WOMEN'S 1084 00:47:38,273 --> 00:47:39,274 HEALTH RESEARCH. 1085 00:47:39,274 --> 00:47:44,612 MARIA SHRIVER IS VERY ACTIVE IN 1086 00:47:44,612 --> 00:47:45,914 DISCUSSIONS WITH THE WHITE HOUSE 1087 00:47:45,914 --> 00:47:48,917 AND SHE HAS A CERTAIN CONCEPT 1088 00:47:48,917 --> 00:47:52,921 BASED ON WHAT EUNICE SHRIVER 1089 00:47:52,921 --> 00:47:56,357 EXPERIENCED AND HER FATHER HAD 1090 00:47:56,357 --> 00:47:58,526 ALZHEIMER'S BUT WOMEN HAVE ARE 1091 00:47:58,526 --> 00:48:02,330 MORE COMMONLY AFFECTED BY ZIRMZ 1092 00:48:02,330 --> 00:48:03,498 OF ALZHEIMER'S AND HER MOTHER 1093 00:48:03,498 --> 00:48:04,966 HAD CONDITIONS AND VARIOUS 1094 00:48:04,966 --> 00:48:05,199 THINGS. 1095 00:48:05,199 --> 00:48:09,437 WE ARE TAKING THE APPROACH THAT 1096 00:48:09,437 --> 00:48:11,773 WOMEN'S HEALTH SHOULD INCLUDE 1097 00:48:11,773 --> 00:48:14,475 REPRODUCTIVE HEALTH FOR MANY 1098 00:48:14,475 --> 00:48:14,709 REASONS. 1099 00:48:14,709 --> 00:48:17,779 INCLUDING PREGNANCY AS A RISK 1100 00:48:17,779 --> 00:48:21,215 FACTOR FOR LATER ONSET 1101 00:48:21,215 --> 00:48:22,750 COMPLICATIONS, RECENT DATA USING 1102 00:48:22,750 --> 00:48:25,420 A SWEDISH DATABASE SUGGESTS THAT 1103 00:48:25,420 --> 00:48:28,323 A LIFE SPAN OF PEOPLE DIED 1104 00:48:28,323 --> 00:48:29,958 EARLIER THAN THEIR COUNTERPARTS 1105 00:48:29,958 --> 00:48:31,926 IF THEY HAD COMPLICATIONS WITH 1106 00:48:31,926 --> 00:48:33,928 PREGNANCY SO WE THINK IT'S VERY 1107 00:48:33,928 --> 00:48:35,563 IMPORTANT TO INCLUDE THE 1108 00:48:35,563 --> 00:48:36,431 PREGNANCY HISTORY AND THE OVER 1109 00:48:36,431 --> 00:48:40,435 ALL PICTURE OF WOMEN'S HEALTH 1110 00:48:40,435 --> 00:48:42,036 AND HOW IT'S A STRESS TEST WHICH 1111 00:48:42,036 --> 00:48:45,006 IS ONE OF OUR STRATEGIC PLAN 1112 00:48:45,006 --> 00:48:45,239 THEMES. 1113 00:48:45,239 --> 00:48:47,108 HOW IT'S A STRESS TEST FOR LATER 1114 00:48:47,108 --> 00:48:50,078 HEALTH. 1115 00:48:50,078 --> 00:48:51,446 THE SHORT ANSWER IS THERE'S A 1116 00:48:51,446 --> 00:48:52,613 LOT OF DISCUSSION OF WHAT IS 1117 00:48:52,613 --> 00:48:55,650 WOMEN'S HEALTH AND WHAT ARE WE 1118 00:48:55,650 --> 00:49:01,055 SPENDING ON WOMEN'S HEALTH. 1119 00:49:01,055 --> 00:49:01,456 PATRICIA. 1120 00:49:01,456 --> 00:49:03,558 >> I'M WONDERING ALONG THOSE 1121 00:49:03,558 --> 00:49:05,293 LINES AND MAYBE YOU'VE ALLUDED 1122 00:49:05,293 --> 00:49:14,202 TO THAT THE DISCUSSION REGARDING 1123 00:49:14,202 --> 00:49:14,836 SPECIFIC TO WOMEN, SPECIFIC TO 1124 00:49:14,836 --> 00:49:15,470 WOMEN WHO CAN BECOME PREGNANT 1125 00:49:15,470 --> 00:49:17,405 AND REPRODUCTIVE HEALTH AND THE 1126 00:49:17,405 --> 00:49:18,439 DISCUSSION ON STUDIES AND 1127 00:49:18,439 --> 00:49:24,245 CLINICAL AND PRE-CLINICAL THAT 1128 00:49:24,245 --> 00:49:26,280 INCLUDE FEMALE, NOT JUST MALES 1129 00:49:26,280 --> 00:49:30,018 IN THE POPULATION IF IT'S A 1130 00:49:30,018 --> 00:49:31,919 CONDITION THAT CAN AFFECT BOTH 1131 00:49:31,919 --> 00:49:32,286 GENDERS. 1132 00:49:32,286 --> 00:49:35,723 HAS THERE BEEN A BIFURCATION OR 1133 00:49:35,723 --> 00:49:37,558 DISCUSSION ALONG THOSE TRACKS? 1134 00:49:37,558 --> 00:49:42,597 I KNOW IT'S COMPLICATED. 1135 00:49:42,597 --> 00:49:45,466 >> AGAIN, WE'RE IN DISCUSSIONS 1136 00:49:45,466 --> 00:49:47,668 WHAT THIS ALL MEANS. 1137 00:49:47,668 --> 00:49:49,904 THE WHITE HOUSE HAS A CERTAIN 1138 00:49:49,904 --> 00:49:50,271 IDEA. 1139 00:49:50,271 --> 00:49:52,974 THEY ARE NOT NECESSARY DOING THE 1140 00:49:52,974 --> 00:49:54,809 SCIENCE SO IT'S A WORK IN 1141 00:49:54,809 --> 00:49:55,076 PROGRESS. 1142 00:49:55,076 --> 00:49:56,978 I KNOW ALISON IS INVOLVED IN A 1143 00:49:56,978 --> 00:50:00,214 NUMBER OF HEALTH AND HUMAN 1144 00:50:00,214 --> 00:50:02,550 SERVICES COMMITTEES THAT ARE 1145 00:50:02,550 --> 00:50:03,684 ALSO ADDRESSING THIS ISSUE. 1146 00:50:03,684 --> 00:50:06,454 DO YOU WANT TO MAKE A COMMENT? 1147 00:50:06,454 --> 00:50:12,326 >> I THINK THE WAY THIS IS 1148 00:50:12,326 --> 00:50:15,196 PLAYING OUT IS THAT MATERNAL 1149 00:50:15,196 --> 00:50:17,031 HEALTH RESEARCH HAS ITS OWN 1150 00:50:17,031 --> 00:50:18,299 STRATEGIC DIRECTION AND 1151 00:50:18,299 --> 00:50:19,567 BLUEPRINT FOR MATERNAL HEALTH 1152 00:50:19,567 --> 00:50:21,302 RESEARCH AND WHITE HOUSE 1153 00:50:21,302 --> 00:50:22,603 TRACKING AND SEPARATE REPORTS TO 1154 00:50:22,603 --> 00:50:24,939 CONGRESS AND OTHER FUN POLICY 1155 00:50:24,939 --> 00:50:25,306 DOCUMENTS. 1156 00:50:25,306 --> 00:50:27,308 THEN WE HAVE REPRODUCTIVE HEALTH 1157 00:50:27,308 --> 00:50:30,411 ACCESS WHICH IS ALSO BEING LED 1158 00:50:30,411 --> 00:50:31,446 BY THE WHITE HOUSE AND HAS 1159 00:50:31,446 --> 00:50:35,116 SEPARATE EXECUTIVE ORDERS AND 1160 00:50:35,116 --> 00:50:38,219 THEN WITHIN HHS A SEPARATE 1161 00:50:38,219 --> 00:50:42,623 COORDINATING COMMITTEE THAT HAS 1162 00:50:42,623 --> 00:50:44,425 LEGISLATIVE POLICY, LEGAL PIECES 1163 00:50:44,425 --> 00:50:48,596 AND THEN WOMEN'S HEALTH PIECE. 1164 00:50:48,596 --> 00:50:51,132 SO I THINK THERE'S DIFFERENT 1165 00:50:51,132 --> 00:50:54,402 WAYS WE ARE APPROACHING 1166 00:50:54,402 --> 00:50:57,538 DIFFERENT ISSUES BECAUSE THEY'RE 1167 00:50:57,538 --> 00:51:00,341 IN DIFFERENT STAGES OF MATURITY. 1168 00:51:00,341 --> 00:51:02,310 THE REPRODUCTIVE ISSUE IS STILL 1169 00:51:02,310 --> 00:51:02,977 EVOLVING AND COULD EVEN CHANGE 1170 00:51:02,977 --> 00:51:04,345 THIS MONTH. 1171 00:51:04,345 --> 00:51:05,847 OUR ABILITY TO APPROACH THAT 1172 00:51:05,847 --> 00:51:09,884 FROM A RESEARCH AND FUNDING 1173 00:51:09,884 --> 00:51:12,720 PERSPECTIVE KEEPS CHANGING 1174 00:51:12,720 --> 00:51:14,422 BECAUSE THE RULES KEEP CHANGING. 1175 00:51:14,422 --> 00:51:16,858 TO THE EXTENT WE CAN THINK OF 1176 00:51:16,858 --> 00:51:19,727 WOMEN AS WHOLE PEOPLE THAT HAVE 1177 00:51:19,727 --> 00:51:21,996 A LIFE SPAN THAT STARTS EVEN 1178 00:51:21,996 --> 00:51:25,800 BEFORE BIRTH, DIANA HAS POINTED 1179 00:51:25,800 --> 00:51:27,768 OUT GENETICALLY SOME 1180 00:51:27,768 --> 00:51:28,102 DISTINCTIONS. 1181 00:51:28,102 --> 00:51:30,171 WE HAVE TO THINK ABOUT IT FROM A 1182 00:51:30,171 --> 00:51:31,005 RESEARCH PERSPECTIVE 1183 00:51:31,005 --> 00:51:31,305 DIFFERENTLY. 1184 00:51:31,305 --> 00:51:36,911 >> I WOULD SAY IT'S AN 1185 00:51:36,911 --> 00:51:37,211 OPPORTUNITY. 1186 00:51:37,211 --> 00:51:39,747 THERE HASN'T PREVIOUSLY BEEN 1187 00:51:39,747 --> 00:51:40,548 THIS LEVEL OF CONVERSATION ABOUT 1188 00:51:40,548 --> 00:51:43,551 WOMEN AND ABOUT WOMEN'S HEALTH. 1189 00:51:43,551 --> 00:51:46,721 WE NEED TO TAKE ADVANTAGE OF THE 1190 00:51:46,721 --> 00:51:49,857 OPPORTUNITY AND IT CERTAINLY 1191 00:51:49,857 --> 00:51:51,125 WILL INFLUENCE OUR RESEARCH 1192 00:51:51,125 --> 00:51:53,961 PORTFOLIO NO MATTER WHAT HAPPENS 1193 00:51:53,961 --> 00:51:55,129 POLITICALLY FOR WITH THIS 1194 00:51:55,129 --> 00:51:56,330 RESEARCH INITIATIVE. 1195 00:51:56,330 --> 00:51:58,065 YES, CYNTHIA I WAS WAITING FOR 1196 00:51:58,065 --> 00:51:59,934 YOU TO RAISE YOUR HAND. 1197 00:51:59,934 --> 00:52:01,369 >> JUST THE CONVERSATION HAS 1198 00:52:01,369 --> 00:52:03,337 BEEN VERY INTERESTING AND I'M 1199 00:52:03,337 --> 00:52:05,740 LISTENING AND LEARNING AS A NEW 1200 00:52:05,740 --> 00:52:06,908 MEMBER SO THANK YOU FOR YOUR 1201 00:52:06,908 --> 00:52:07,241 PRESENTATION. 1202 00:52:07,241 --> 00:52:09,343 THE QUESTION I HAD IS YOU SHOWED 1203 00:52:09,343 --> 00:52:12,146 THE PROPORTION OF ALLOCATIONS TO 1204 00:52:12,146 --> 00:52:14,215 THE PORTFOLIO WITHIN THE 1205 00:52:14,215 --> 00:52:18,419 INSTITUTE WITH I THINK 55% WAS 1206 00:52:18,419 --> 00:52:20,388 PEDIATRICS AND 30% WOMEN'S 1207 00:52:20,388 --> 00:52:22,957 HEALTH AND 15% FOR THE OTHER, 1208 00:52:22,957 --> 00:52:23,691 REHAB. 1209 00:52:23,691 --> 00:52:26,561 HAS THAT EVOLVED OR HAS IT BEEN 1210 00:52:26,561 --> 00:52:29,130 SIMILAR OR IS THERE A TARGET 1211 00:52:29,130 --> 00:52:29,830 YOU'RE LOOKING FOR? 1212 00:52:29,830 --> 00:52:34,335 >> IT HAS EVOLVED OVER TIME. 1213 00:52:34,335 --> 00:52:36,337 I THINK, FOR EXAMPLE, 1214 00:52:36,337 --> 00:52:39,106 DR. ALEXANDER WHO WAS THE 1215 00:52:39,106 --> 00:52:42,243 DIRECTOR OF NICHD FOR 23 YEARS 1216 00:52:42,243 --> 00:52:46,280 HIS FOCUS WAS VERY MUCH ON CHILD 1217 00:52:46,280 --> 00:52:51,185 DEVELOPMENT AND THAT'S ONE OF 1218 00:52:51,185 --> 00:52:57,325 THE REASONS WHY, WELL, HE ALSO 1219 00:52:57,325 --> 00:53:00,461 VOLUNTEERED TO BE IN NICHD 1220 00:53:00,461 --> 00:53:02,363 BECAUSE OF THE CONNECTION OF 1221 00:53:02,363 --> 00:53:03,764 INTELLECTUAL AND PHYSICAL 1222 00:53:03,764 --> 00:53:04,865 DISABILITY. 1223 00:53:04,865 --> 00:53:06,634 MY INTERESTS HAVE ALWAYS BEEN 1224 00:53:06,634 --> 00:53:11,973 SPLIT BETWEEN PEDIATRICS AND 1225 00:53:11,973 --> 00:53:13,407 OBSTETRICS AND TIMES HAVE 1226 00:53:13,407 --> 00:53:15,776 CHANGED AND THE RECOGNITION OF 1227 00:53:15,776 --> 00:53:16,477 DEVELOPMENTAL ORIGINS OF HEALTH 1228 00:53:16,477 --> 00:53:19,113 AND DISEASE, THE CONNECTION 1229 00:53:19,113 --> 00:53:21,415 BETWEEN PREGNANCY, THE HEALTH OF 1230 00:53:21,415 --> 00:53:23,117 A PLACENTA FOR EXAMPLE AND THE 1231 00:53:23,117 --> 00:53:26,354 LONG-TERM EFFECTS ON THE CHILD 1232 00:53:26,354 --> 00:53:29,590 WHO THEN BECOMES THE ADULT IT 1233 00:53:29,590 --> 00:53:33,094 SEEMS LIKE YOU CAN'T TAKE THOSE 1234 00:53:33,094 --> 00:53:33,427 SEPARATELY. 1235 00:53:33,427 --> 00:53:35,763 I DON'T KNOW EXACTLY BUT I WOULD 1236 00:53:35,763 --> 00:53:39,667 VENTURE TO GUESS THE PERCENTAGE 1237 00:53:39,667 --> 00:53:42,436 OF REPRODUCTIVE RELATED RESEARCH 1238 00:53:42,436 --> 00:53:46,107 HAS INCREASED. 1239 00:53:46,107 --> 00:53:50,511 AND I SAID 16% -- WE ACCOUNT FOR 1240 00:53:50,511 --> 00:53:53,648 16% OF NIH'S BUDGET IN CHILD 1241 00:53:53,648 --> 00:53:55,283 HEALTH RESEARCH BUT IT'S OVER 1242 00:53:55,283 --> 00:53:58,419 50% OF MATERNAL HEALTH RESEARCH 1243 00:53:58,419 --> 00:54:06,594 AT NIH IS FUNDED BY NICHD. 1244 00:54:06,594 --> 00:54:14,935 SO, WE REALLY OUR NAME IS IN THE 1245 00:54:14,935 --> 00:54:16,737 MISNOMER WE'RE THE LEAD 1246 00:54:16,737 --> 00:54:18,205 INSTITUTE FOR WOMEN'S HEALTH 1247 00:54:18,205 --> 00:54:19,440 RESEARCH AS WELL. 1248 00:54:19,440 --> 00:54:25,379 NCI SPENDS MORE MONEY ON FOR 1249 00:54:25,379 --> 00:54:26,347 EXAMPLE BREAST CANCER, FEMALE 1250 00:54:26,347 --> 00:54:26,714 CANCERS. 1251 00:54:26,714 --> 00:54:29,150 IF YOU LOOK AT ABSOLUTE DOLLARS 1252 00:54:29,150 --> 00:54:30,918 THEY SPEND A LOT OF MORE BUT 1253 00:54:30,918 --> 00:54:33,988 ALSO HAVE A BIGGER DENOMINATOR 1254 00:54:33,988 --> 00:54:37,591 THAN WE HAVE. 1255 00:54:37,591 --> 00:54:37,792 EMMA. 1256 00:54:37,792 --> 00:54:38,859 >> ANNA. 1257 00:54:38,859 --> 00:54:42,596 I WAS HOPING YOU COULD ELABORATE 1258 00:54:42,596 --> 00:54:44,899 A BIT HOW YOU THINK OF 1259 00:54:44,899 --> 00:54:47,101 INCORPORATING THE SOCIAL 1260 00:54:47,101 --> 00:54:50,871 DETERMINATES OF HEALTH IN THIS 1261 00:54:50,871 --> 00:54:53,074 VERY AMBITIOUS RESEARCH AGENDA 1262 00:54:53,074 --> 00:54:56,711 AS IT RELATES TO WOMEN'S AND 1263 00:54:56,711 --> 00:54:56,977 CHILDREN. 1264 00:54:56,977 --> 00:54:58,913 >> SOCIAL DETERMINATES OF HEALTH 1265 00:54:58,913 --> 00:55:02,116 ARE VERY MUCH INCLUDED IN EACH 1266 00:55:02,116 --> 00:55:04,552 OF THE THEMES AND ALSO AT LEAST 1267 00:55:04,552 --> 00:55:06,454 HEALTH DISPARITIES WAS INCLUDED 1268 00:55:06,454 --> 00:55:09,490 AS A CROSS-CUTTING THEME IN THE 1269 00:55:09,490 --> 00:55:11,826 PREVIOUS STRATEGIC PLAN AND I'M 1270 00:55:11,826 --> 00:55:13,861 SURE WE WILL BE CONTINUING A 1271 00:55:13,861 --> 00:55:16,964 FOCUS ON BOTH HEALTH 1272 00:55:16,964 --> 00:55:18,332 DISPARITIES, SOCIAL AND 1273 00:55:18,332 --> 00:55:19,100 ENVIRONMENTAL ASPECTS OF HEALTH 1274 00:55:19,100 --> 00:55:29,243 AS WELL. 1275 00:55:31,011 --> 00:55:33,681 WHEN WE START TO PRESENT YOU'LL 1276 00:55:33,681 --> 00:55:35,449 SEE IT IN THE SUBTOPIC AREAS. 1277 00:55:35,449 --> 00:55:37,852 >> ONE QUICK FOLLOW-UP. 1278 00:55:37,852 --> 00:55:40,821 DOES ANY OF THAT CONSIDER THE 1279 00:55:40,821 --> 00:55:42,456 POSSIBILITY OF THINKING OF 1280 00:55:42,456 --> 00:55:44,425 SOCIAL OUTCOMES THAT ARE 1281 00:55:44,425 --> 00:55:47,728 AFFECTED BY HEALTH AND HEALTH 1282 00:55:47,728 --> 00:55:48,062 INTERVENTIONS? 1283 00:55:48,062 --> 00:55:52,700 >> IN WAY WAY THIS IS A GREAT 1284 00:55:52,700 --> 00:55:55,069 SEGUE TO ONE OF OUR GUEST 1285 00:55:55,069 --> 00:55:55,669 SPEAKERS THE DIRECTOR OF THE 1286 00:55:55,669 --> 00:56:00,374 OFFICE OF BEHAVIORAL AND SOCIAL 1287 00:56:00,374 --> 00:56:00,608 HEALTH. 1288 00:56:00,608 --> 00:56:04,478 SO I WILL WAIT FOR DR. SIMONI'S 1289 00:56:04,478 --> 00:56:04,678 TALK. 1290 00:56:04,678 --> 00:56:06,714 >> DR. BIANCHI, DR. PERRY HAS A 1291 00:56:06,714 --> 00:56:13,254 QUESTION ONLINE. 1292 00:56:13,254 --> 00:56:13,687 >> GOOD MORNING. 1293 00:56:13,687 --> 00:56:14,422 GREAT PRESENTATION. 1294 00:56:14,422 --> 00:56:15,589 IT WAS SUPER HELPFUL. 1295 00:56:15,589 --> 00:56:18,292 ONE OF MY QUESTIONS WAS AROUND 1296 00:56:18,292 --> 00:56:18,559 MENOPAUSE. 1297 00:56:18,559 --> 00:56:22,163 YOU MENTIONED PREMATURE 1298 00:56:22,163 --> 00:56:24,498 MENOPAUSE AND MOST MENOPAUSE IS 1299 00:56:24,498 --> 00:56:24,999 NOT PREMATURE. 1300 00:56:24,999 --> 00:56:29,703 IT HAPPENS NATURALLY AND THERE'S 1301 00:56:29,703 --> 00:56:31,105 AN AGE GROUP NIH DOESN'T 1302 00:56:31,105 --> 00:56:33,908 CONSIDER TO BE CHANGES OR FIT 1303 00:56:33,908 --> 00:56:40,781 WITHIN THEIR PORTFOLIO SO IS 1304 00:56:40,781 --> 00:56:42,983 NICHD ANTICIPATING EXPANDING ON 1305 00:56:42,983 --> 00:56:45,586 MENOPAUSE AND PERIMENOPAUSE. 1306 00:56:45,586 --> 00:56:48,322 >> THANK YOU GENEVIEVE FOR THE 1307 00:56:48,322 --> 00:56:48,789 QUESTION. 1308 00:56:48,789 --> 00:56:50,758 AS THE TREMENDOUS CONGRESSIONAL 1309 00:56:50,758 --> 00:56:52,893 INTEREST IN MENOPAUSE. 1310 00:56:52,893 --> 00:56:54,829 WE HAVE ALREADY HAD PRELIMINARY 1311 00:56:54,829 --> 00:56:55,463 DISCUSSIONS WITH THE NATIONAL 1312 00:56:55,463 --> 00:56:58,432 INSTITUTE ON AGING WHICH IS THE 1313 00:56:58,432 --> 00:56:59,800 INSTITUTE THAT CURRENTLY FUNDS 1314 00:56:59,800 --> 00:57:05,039 MOST THE RESEARCH ON MENOPAUSE. 1315 00:57:05,039 --> 00:57:06,474 SO THERE ARE DEFINITELY AREAS 1316 00:57:06,474 --> 00:57:10,010 FOR US TO WORK TOGETHER AND LOOK 1317 00:57:10,010 --> 00:57:11,412 AT A CONTINUUM. 1318 00:57:11,412 --> 00:57:13,080 WHEN I MENTIONED EARLY MENOPAUSE 1319 00:57:13,080 --> 00:57:15,883 IS WHAT WE'RE CURRENTLY FUNDING 1320 00:57:15,883 --> 00:57:18,786 BUT WITH THE INCREASED INTERESTS 1321 00:57:18,786 --> 00:57:22,656 HOPING IT TRANSLATES TO DOLLARS 1322 00:57:22,656 --> 00:57:24,258 AND OPPORTUNITIES. 1323 00:57:24,258 --> 00:57:26,527 WE KNOW -- WHEN DR. BERTAGNOLLI 1324 00:57:26,527 --> 00:57:29,597 WAS TALKING ABOUT HER MEETINGS 1325 00:57:29,597 --> 00:57:34,435 AND SHE HAS BEEN INCREDIBLE IN 1326 00:57:34,435 --> 00:57:38,839 TERMS OF MEETING MANY CENTER 1327 00:57:38,839 --> 00:57:40,975 SENATORS, GOING ON THE ROAD TO 1328 00:57:40,975 --> 00:57:43,110 MEETING OTHER SENATORS AND 1329 00:57:43,110 --> 00:57:44,044 CONGRESSIONAL REPRESENTATIVES, 1330 00:57:44,044 --> 00:57:47,114 SHE SAID MORE THAN ONE 1331 00:57:47,114 --> 00:57:54,488 U.S. MEMBER ASKED HER TO FIX 1332 00:57:54,488 --> 00:57:54,755 MENOPAUSE. 1333 00:57:54,755 --> 00:57:56,957 SO, I ANTICIPATE OPPORTUNITIES 1334 00:57:56,957 --> 00:58:02,530 AND WE HAVE AN EXCELLENT 1335 00:58:02,530 --> 00:58:04,532 RELATIONSHIP AND ARE 1336 00:58:04,532 --> 00:58:07,167 ANTICIPATING DOING MORE. 1337 00:58:07,167 --> 00:58:12,473 >> OFTEN IT'S FELT LIKE WHERE 1338 00:58:12,473 --> 00:58:14,275 IT'S NOT MATERNAL AND NOT IN THE 1339 00:58:14,275 --> 00:58:18,479 AGE RANGE THAT OFTEN IS 1340 00:58:18,479 --> 00:58:20,347 CONSIDERED OF INTEREST OF NIA. 1341 00:58:20,347 --> 00:58:23,417 IT'S GREAT TO HEAR. 1342 00:58:23,417 --> 00:58:23,684 THANK YOU. 1343 00:58:23,684 --> 00:58:25,786 >> MARCEL. 1344 00:58:25,786 --> 00:58:27,721 >> THANK YOU. 1345 00:58:27,721 --> 00:58:29,423 ALONG THAT LINE I HAD A 1346 00:58:29,423 --> 00:58:30,491 QUESTION. 1347 00:58:30,491 --> 00:58:34,662 YOU MENTIONED MATERNAL HEALTH IS 1348 00:58:34,662 --> 00:58:39,133 LARGELY FUNDED AND 30% GOES TO 1349 00:58:39,133 --> 00:58:41,435 REPRODUCTIVE HEALTH I SUSPECT A 1350 00:58:41,435 --> 00:58:43,103 LOT GOES TO MATERNAL HEALTH AND 1351 00:58:43,103 --> 00:58:46,273 SINCE NICHD IS THE LARGEST 1352 00:58:46,273 --> 00:58:49,009 FUNDER OF WOMEN'S HEALTH 1353 00:58:49,009 --> 00:58:50,411 NON-PREGNANCY RELATED DO YOU 1354 00:58:50,411 --> 00:58:51,979 HAVE AN ESTIMATE HOW MUCH GOES 1355 00:58:51,979 --> 00:58:55,916 TO NON-PREGNANCY RELATED -- 1356 00:58:55,916 --> 00:58:56,517 >> ACTUALLY A CONSIDERABLE 1357 00:58:56,517 --> 00:58:59,119 AMOUNT WHEN I WENT TO THE SLIDE 1358 00:58:59,119 --> 00:59:03,023 ON MATERNAL HEALTH, THE 1359 00:59:03,023 --> 00:59:03,924 GYNECOLOGIC HEALTH AND DISEASE 1360 00:59:03,924 --> 00:59:05,793 BRANCH WHICH IS A RELATIVELY NEW 1361 00:59:05,793 --> 00:59:07,494 BRANCH HAS BEEN AN AREA THAT'S 1362 00:59:07,494 --> 00:59:08,729 BEEN GROWING. 1363 00:59:08,729 --> 00:59:12,666 WE HAVE A NEW CHIEF OF THAT 1364 00:59:12,666 --> 00:59:16,503 BRANCH AND BECAUSE OF THE ACT 1365 00:59:16,503 --> 00:59:22,209 AND WE HAVE MADE IT CLEAR WE OWN 1366 00:59:22,209 --> 00:59:23,177 ENDOMETRIOSIS AND WE'RE THE 1367 00:59:23,177 --> 00:59:24,945 LEADER IN THAT RESEARCH AND WHY 1368 00:59:24,945 --> 00:59:30,150 IT'S IMPORTANT AND WHY IT'S AN 1369 00:59:30,150 --> 00:59:31,685 AREA FOR FURTHER 1370 00:59:31,685 --> 00:59:33,220 MULTI-DISCIPLINELY RESEARCH AND 1371 00:59:33,220 --> 00:59:36,490 WE HAVE GYNECOLOGIC HEALTH AND 1372 00:59:36,490 --> 00:59:38,392 DISEASE INCLUDING PELVIC FLOOR 1373 00:59:38,392 --> 00:59:40,427 DISORDERS AND PCOS AND ENDO. 1374 00:59:40,427 --> 00:59:44,031 WE HAVE FERTILITY AND 1375 00:59:44,031 --> 00:59:44,331 INFERTILITY. 1376 00:59:44,331 --> 00:59:48,502 SO WE HAVE CONTRACEPTION AND 1377 00:59:48,502 --> 00:59:51,105 THEN WE HAVE PEDIATRIC AND 1378 00:59:51,105 --> 00:59:53,574 OBSTETRIC PHARMACOLOGY AND THEN 1379 00:59:53,574 --> 00:59:55,709 POPULATION DYNAMICS WHICH IS NOT 1380 00:59:55,709 --> 00:59:59,980 AS SPECIFIC BUT MORE FAMILY 1381 00:59:59,980 --> 01:00:00,514 RELATED. 1382 01:00:00,514 --> 01:00:06,453 I THINK IT'S NOT TRUE OUR 1383 01:00:06,453 --> 01:00:08,022 WOMEN'S HEALTH AREA IS 1384 01:00:08,022 --> 01:00:09,323 EXCLUSIVELY OR THE MAJORITY IS 1385 01:00:09,323 --> 01:00:14,595 IN MATERNAL HEALTH. 1386 01:00:14,595 --> 01:00:17,197 YES, WE HAVE LOTS OF OB-GYN 1387 01:00:17,197 --> 01:00:20,601 INTEREST HERE. 1388 01:00:20,601 --> 01:00:23,837 >> YEAH, I'M VERY INTERESTED IN 1389 01:00:23,837 --> 01:00:24,972 THIS CONVERSATION BECAUSE IT'S 1390 01:00:24,972 --> 01:00:30,344 JUST SO FASCINATING PARTICULARLY 1391 01:00:30,344 --> 01:00:35,315 AS YOU MENTION ED KNOW RECENT 1392 01:00:35,315 --> 01:00:42,256 PAPER DEFINING THE OBSTETRIC 1393 01:00:42,256 --> 01:00:44,892 OUTCOMES WITH LONG-TERM 1394 01:00:44,892 --> 01:00:46,860 CONSEQUENCES AND PREECLAMPSIA 1395 01:00:46,860 --> 01:00:50,698 AND ALL THOSE AND YOU HAVE TO 1396 01:00:50,698 --> 01:00:53,901 HAVE A WELL PHENOTYPED OBSTETRIC 1397 01:00:53,901 --> 01:00:54,568 CIRCUMSTANCE TO UNDERSTAND WHAT 1398 01:00:54,568 --> 01:00:55,669 HAPPENS DOWN THE LINE. 1399 01:00:55,669 --> 01:00:57,304 IT'S CHALLENGING TO STUDY THAT 1400 01:00:57,304 --> 01:01:01,241 WITHIN THE CONFINES OF THE WAY 1401 01:01:01,241 --> 01:01:02,142 OF THE FUNDING. 1402 01:01:02,142 --> 01:01:04,845 YOU HAVE THIS WELL DESCRIBED 1403 01:01:04,845 --> 01:01:05,479 OBSTETRIC PHENOTYPE BUT DON'T 1404 01:01:05,479 --> 01:01:07,114 HAVE TIME TO LOOK FIVE, SEVEN 1405 01:01:07,114 --> 01:01:09,383 YEARS DOWN THE LINE OR PARTNER 1406 01:01:09,383 --> 01:01:12,519 WITH ANOTHER INSTITUTE THAT 1407 01:01:12,519 --> 01:01:13,620 DOESN'T HAVE THE OBSTETRIC 1408 01:01:13,620 --> 01:01:13,887 PHENOTYPE. 1409 01:01:13,887 --> 01:01:15,089 I'M WONDERING HOW TO RESOLVE 1410 01:01:15,089 --> 01:01:18,859 SOME OF THOSE ISSUES. 1411 01:01:18,859 --> 01:01:21,061 >> IT'S GOING TO TAKE A BIG DATA 1412 01:01:21,061 --> 01:01:25,499 APPROACH AND COMMON DATA 1413 01:01:25,499 --> 01:01:27,735 ELEMENTS AS YOU SAID. 1414 01:01:27,735 --> 01:01:29,803 REFINED PHENOTYPING AND IN 1415 01:01:29,803 --> 01:01:31,338 SWEDEN YOU GET A HEALTH I.D. FOR 1416 01:01:31,338 --> 01:01:32,473 YOUR LIFE. 1417 01:01:32,473 --> 01:01:39,012 YOU CAN TAKE THE CURRENT 1418 01:01:39,012 --> 01:01:40,347 POPULATION OF WOMEN IN THEIR 50s 1419 01:01:40,347 --> 01:01:43,117 AND 60s AND LOOK BACK AT THEIR 1420 01:01:43,117 --> 01:01:43,751 PREGNANCY HISTORIES. 1421 01:01:43,751 --> 01:01:47,621 IT WILL BE HARD FOR US TO DO 1422 01:01:47,621 --> 01:01:53,026 THAT BECAUSE PEOPLE MY AGE WE 1423 01:01:53,026 --> 01:02:00,534 HAD PAPER RECORDS YOU COULDN'T 1424 01:02:00,534 --> 01:02:04,738 READ THE DOCTOR'S HANDWRITING. 1425 01:02:04,738 --> 01:02:06,406 I THINK IT WILL TAKE PARTNERSHIP 1426 01:02:06,406 --> 01:02:08,342 WITH COUNTRIES WHO DO A BETTER 1427 01:02:08,342 --> 01:02:10,110 JOB OF TRACKING PEOPLE THROUGH 1428 01:02:10,110 --> 01:02:12,513 THEIR LIFE SPAN BUT THE PROBLEM 1429 01:02:12,513 --> 01:02:16,383 WITH A PLACE LIKE SWEDEN IS IT'S 1430 01:02:16,383 --> 01:02:18,786 NOT VERY DIVERSE AND MAY NOT 1431 01:02:18,786 --> 01:02:20,420 REFLECT THE DIVERSITY OF THE 1432 01:02:20,420 --> 01:02:21,355 UNITED STATES. 1433 01:02:21,355 --> 01:02:23,423 FINALLY A PEDIATRICIAN. 1434 01:02:23,423 --> 01:02:26,293 >> HAVING A WELL PHENOTYPED 1435 01:02:26,293 --> 01:02:29,096 LONGITUDINAL COHORT FROM 1436 01:02:29,096 --> 01:02:30,497 PREGNANCY OR POSSIBLY AS YOU 1437 01:02:30,497 --> 01:02:32,266 SUGGEST THE ANSWER IS TO WORK 1438 01:02:32,266 --> 01:02:35,936 WITH COUNTRIES THAT HAVE 1439 01:02:35,936 --> 01:02:37,704 NATIONAL HEALTH RECORDS AND 1440 01:02:37,704 --> 01:02:42,509 OTHER TERRIBLY IMPORTANT OUTCOME 1441 01:02:42,509 --> 01:02:46,780 THAT'S HARD TO TRACK TONE 1442 01:02:46,780 --> 01:02:48,348 VALIDATED AND HOPING THERE'LL BE 1443 01:02:48,348 --> 01:02:53,754 OPENNESS TO DEVELOPING SMART 1444 01:02:53,754 --> 01:02:57,925 COHORTS I THINK BIG DATA 1445 01:02:57,925 --> 01:02:59,126 ANALYSIS CAN HELP GAIN NEW 1446 01:02:59,126 --> 01:03:00,460 INSIGHTS. 1447 01:03:00,460 --> 01:03:03,130 >> AGAIN, SOMEBODY ASKED HOW CAN 1448 01:03:03,130 --> 01:03:07,734 YOU HELP US, YOU CAN HELP US BY 1449 01:03:07,734 --> 01:03:11,672 PROMOTING THE CONCEPT THAT 1450 01:03:11,672 --> 01:03:14,107 PREGNANCY IS NOT A DISCREET LIFE 1451 01:03:14,107 --> 01:03:14,575 EXPERIENCE. 1452 01:03:14,575 --> 01:03:15,943 IT'S A CONTINUUM. 1453 01:03:15,943 --> 01:03:17,911 ONE OF THE THINGS THAT STRUCK US 1454 01:03:17,911 --> 01:03:22,382 THAT WE'RE PROBABLY 200 PEOPLE 1455 01:03:22,382 --> 01:03:24,318 AT THE SIGNING OF THE EXECUTIVE 1456 01:03:24,318 --> 01:03:27,354 ORDER AND I KNOW A LOT OF OBs. 1457 01:03:27,354 --> 01:03:28,989 I DON'T KNOW EVERYBODY BUT I WAS 1458 01:03:28,989 --> 01:03:30,390 LOOKING AROUND THE ROOM AND 1459 01:03:30,390 --> 01:03:34,695 DIDN'T SEE A WHOLE LOT OF 1460 01:03:34,695 --> 01:03:36,196 OB-GYN'S EFFORT AND PART OF THE 1461 01:03:36,196 --> 01:03:40,133 ISSUE ALISON MENTIONED THAT 1462 01:03:40,133 --> 01:03:42,202 PREGNANCY AND MATERNAL HEALTH IS 1463 01:03:42,202 --> 01:03:44,204 AN A DIFFERENT AREA AND THAT'S 1464 01:03:44,204 --> 01:03:47,107 THE VICE PRESIDENT'S AREA OF 1465 01:03:47,107 --> 01:03:50,577 FOCUS. 1466 01:03:50,577 --> 01:03:52,145 SO WARE TRYING TO PROMOTE THE 1467 01:03:52,145 --> 01:03:52,946 CONCEPT THAT PREGNANCY IS 1468 01:03:52,946 --> 01:03:54,748 CONNECTED TO LATER WOMEN'S 1469 01:03:54,748 --> 01:03:57,184 HEALTH. 1470 01:03:57,184 --> 01:04:00,053 SO IF YOU CAN HELP US TO 1471 01:04:00,053 --> 01:04:00,687 COMMUNICATE THAT ISSUE WE WOULD 1472 01:04:00,687 --> 01:04:08,095 APPRECIATE IT. 1473 01:04:08,095 --> 01:04:09,429 AM I AT TIME? 1474 01:04:09,429 --> 01:04:10,464 >> DR. NEIL PERRY HAS A 1475 01:04:10,464 --> 01:04:20,641 QUESTION. 1476 01:04:24,711 --> 01:04:27,447 >> I AGREE SOME PRAISES LIKE 1477 01:04:27,447 --> 01:04:30,517 SWEDEN DATA IS GREAT BUT IT'S 1478 01:04:30,517 --> 01:04:34,354 SUCH A HOMOGENOUS POPULATION AND 1479 01:04:34,354 --> 01:04:36,523 YOU SAID THAT AND I WANT TO 1480 01:04:36,523 --> 01:04:38,692 ELEVATE THAT BECAUSE IF WE MAKE 1481 01:04:38,692 --> 01:04:40,994 ASSUMPTIONS WITH A HUGE PORTION 1482 01:04:40,994 --> 01:04:42,629 OF THIS COUNTRY ARE EXCLUDED I 1483 01:04:42,629 --> 01:04:45,666 WOULD HAVE GREAT CONCERNS. 1484 01:04:45,666 --> 01:04:51,471 I'D BE VERY THOUGHTFUL AND 1485 01:04:51,471 --> 01:04:52,606 CAREFUL IN DOING THINGS LIKE 1486 01:04:52,606 --> 01:04:52,806 THAT. 1487 01:04:52,806 --> 01:04:56,910 >> THANK YOU FOR THAT COMMENT. 1488 01:04:56,910 --> 01:05:00,180 >> I JUST WANTED TO COME BACK TO 1489 01:05:00,180 --> 01:05:05,585 THIS RELATED TO ALL OF US, THE 1490 01:05:05,585 --> 01:05:08,989 REPRODUCTIVE HEALTH PHENOTYPING 1491 01:05:08,989 --> 01:05:12,526 AND PHENOTYPE RELATED 1492 01:05:12,526 --> 01:05:15,829 INFORMATION TO WOMEN'S HEALTH, 1493 01:05:15,829 --> 01:05:17,464 HAS NICHD PROVIDED INPUT ON THAT 1494 01:05:17,464 --> 01:05:25,572 ASPECT OF ALL OF US? 1495 01:05:25,572 --> 01:05:29,943 >> YOU'RE SHAKING YOUR HEAD. 1496 01:05:29,943 --> 01:05:32,346 SO THEY HAVE SEVERAL TENS OF 1497 01:05:32,346 --> 01:05:33,380 THOUSANDS OF WOMEN WHO WERE 1498 01:05:33,380 --> 01:05:35,682 PREGNANT AT THE TIME OF 1499 01:05:35,682 --> 01:05:37,150 ENROLLMENT SO THAT'S GOOD NEWS. 1500 01:05:37,150 --> 01:05:39,820 THEY ALSO HAVE PREGNANCY 1501 01:05:39,820 --> 01:05:44,524 HISTORIES FROM THE MEDICAL 1502 01:05:44,524 --> 01:05:48,862 RECORD BUT IF NAHETA DOESN'T 1503 01:05:48,862 --> 01:05:50,998 KNOW -- I WILL SAY THAT I TRIED 1504 01:05:50,998 --> 01:05:52,165 PLAYING AROUND WITH IT ONE TIME. 1505 01:05:52,165 --> 01:05:57,437 I WAS LOOKING FOR A PARTICULAR 1506 01:05:57,437 --> 01:05:59,106 VARIANT IN A GENE AND I WAS 1507 01:05:59,106 --> 01:06:04,378 TRYING TO SEE WHETHER IT WAS 1508 01:06:04,378 --> 01:06:07,114 ASSOCIATED WITH POSTPARTUM 1509 01:06:07,114 --> 01:06:08,782 MYOPATHY AND IT WAS POSSIBLE TO 1510 01:06:08,782 --> 01:06:10,083 DO THAT AND ASK THE SECOND 1511 01:06:10,083 --> 01:06:11,218 QUESTION IS IT RELEVANT FOR 1512 01:06:11,218 --> 01:06:12,519 BLACK WOMEN AND YOU COULD DO 1513 01:06:12,519 --> 01:06:14,187 THAT BUT I DON'T KNOW WHO 1514 01:06:14,187 --> 01:06:18,058 PROVIDED THE INPUT FOR THE 1515 01:06:18,058 --> 01:06:20,327 CATEGORIES BUT THERE WAS 1516 01:06:20,327 --> 01:06:26,133 CARDIOPATHY AND RECENTLY LEARNED 1517 01:06:26,133 --> 01:06:29,736 THEY HAVE AN OPPORTUNITY FOR 1518 01:06:29,736 --> 01:06:30,003 RESEARCH. 1519 01:06:30,003 --> 01:06:31,104 YOU'LL HEAR MORE TODAY. 1520 01:06:31,104 --> 01:06:36,276 >> IT'S NOT EASY TO GET DATA ON 1521 01:06:36,276 --> 01:06:36,977 INFERTILITY AND THOSE ISSUES 1522 01:06:36,977 --> 01:06:38,545 THROUGH ALL OF US. 1523 01:06:38,545 --> 01:06:38,879 WE TRIED. 1524 01:06:38,879 --> 01:06:40,480 >> OKAY. 1525 01:06:40,480 --> 01:06:41,448 I WILL CONVEY THAT TO JOSH 1526 01:06:41,448 --> 01:06:49,790 DENNY. 1527 01:06:49,790 --> 01:06:53,427 >> THEY HAVE ACCESS TO 1528 01:06:53,427 --> 01:06:54,528 ELECTRONIC HEALTH RECORDS SO 1529 01:06:54,528 --> 01:06:56,930 ANYTHING POTENTIALLY IS 1530 01:06:56,930 --> 01:06:57,230 SEARCHABLE. 1531 01:06:57,230 --> 01:07:01,001 SO THERE MAY NOT COLLECT IT AS A 1532 01:07:01,001 --> 01:07:03,637 GENERAL CATEGORY BUT HAVE ACCESS 1533 01:07:03,637 --> 01:07:07,607 TO IT THAT COULD BE 1534 01:07:07,607 --> 01:07:07,941 INTERROGATED. 1535 01:07:07,941 --> 01:07:11,111 YOU MAY NOT SEE ALL OF IT. 1536 01:07:11,111 --> 01:07:13,513 IT WILL BE IN THE LARGER DATA 1537 01:07:13,513 --> 01:07:13,680 SET. 1538 01:07:13,680 --> 01:07:21,521 >> THAT WAS NAHITA NAKU TRA THE 1539 01:07:21,521 --> 01:07:24,424 CHIEF OF OUR TECHNOLOGY BRANCH. 1540 01:07:24,424 --> 01:07:25,392 REBEKAH YOU'RE KEEPING TIME. 1541 01:07:25,392 --> 01:07:26,660 >> I THINK WE'RE READY TO MOVE 1542 01:07:26,660 --> 01:07:27,027 ON. 1543 01:07:27,027 --> 01:07:30,063 >> OKAY. 1544 01:07:30,063 --> 01:07:30,464 ONE MORE QUESTION? 1545 01:07:30,464 --> 01:07:32,566 >> YES, GO. 1546 01:07:32,566 --> 01:07:33,567 >> JOSÉ. 1547 01:07:33,567 --> 01:07:37,003 GOING BACK TO THE FUNDED 1548 01:07:37,003 --> 01:07:38,238 CHALLENGES FOR ALL OF US. 1549 01:07:38,238 --> 01:07:42,542 I WONDER IF THIS IS AN 1550 01:07:42,542 --> 01:07:44,044 OPPORTUNITY FOR INDUSTRY AS WELL 1551 01:07:44,044 --> 01:07:46,113 AND FOUNDATIONS AND EVEN THE 1552 01:07:46,113 --> 01:07:46,346 PUBLIC. 1553 01:07:46,346 --> 01:07:50,250 I DON'T SEE -- I WOULD LIKE TO 1554 01:07:50,250 --> 01:07:51,718 HELP WITH THIS AND -- 1555 01:07:51,718 --> 01:07:54,855 >> SO THANK YOU FOR THAT 1556 01:07:54,855 --> 01:07:55,455 COMMENT. 1557 01:07:55,455 --> 01:07:59,092 I KNOW THAT IN PRIOR YEARS NICHD 1558 01:07:59,092 --> 01:08:01,895 HAD NOT INTERACTED WITH INDUSTRY 1559 01:08:01,895 --> 01:08:05,999 BUT THAT HAS CHANGED. 1560 01:08:05,999 --> 01:08:10,470 WE HAVE INDUSTRY AS PARTNERS FOR 1561 01:08:10,470 --> 01:08:12,506 EXAMPLE IN THE PUBLIC-PRIVATE 1562 01:08:12,506 --> 01:08:14,174 PARTNERSHIP TO DEVELOP PEDIATRIC 1563 01:08:14,174 --> 01:08:14,407 DEVICES. 1564 01:08:14,407 --> 01:08:17,777 WE WORK WITH THE FOUNDATION FOR 1565 01:08:17,777 --> 01:08:20,780 NIH COMMITTED TO GETTING 1566 01:08:20,780 --> 01:08:22,983 INDUSTRY PARTNERS TO FUND COMMON 1567 01:08:22,983 --> 01:08:25,285 SHARED RESEARCH PROJECTS. 1568 01:08:25,285 --> 01:08:27,988 SO, I DIDN'T CALL IT OUT 1569 01:08:27,988 --> 01:08:29,422 SPECIFICALLY BUT WE ARE WORKING 1570 01:08:29,422 --> 01:08:30,490 WITH INDUSTRY AND PARTICULARLY 1571 01:08:30,490 --> 01:08:32,492 IN AREAS OF CONTRACEPTION AND 1572 01:08:32,492 --> 01:08:36,463 WOMEN'S HEALTH, THERE'S 1573 01:08:36,463 --> 01:08:37,430 TREMENDOUS INTEREST IN FEMME 1574 01:08:37,430 --> 01:08:38,298 TECH FOR EXAMPLE. 1575 01:08:38,298 --> 01:08:40,667 >> YOU SAW THE FNIH THERE. 1576 01:08:40,667 --> 01:08:43,370 THAT'S ONE WAY TO PARTNER AND 1577 01:08:43,370 --> 01:08:47,207 GET MATCHING DOLLARS FOR EXAMPLE 1578 01:08:47,207 --> 01:08:50,644 THE FETAL MONITORING ARE IS IN 1579 01:08:50,644 --> 01:08:51,912 COLLABORATION WITH THE GATES 1580 01:08:51,912 --> 01:08:54,014 FOUNDATION AND IN CASE YOU HAVE 1581 01:08:54,014 --> 01:08:54,948 INCREDIBLY WEALTHY PEOPLE IN 1582 01:08:54,948 --> 01:08:57,717 YOUR LIFE, WE HAVE A GIFT FUND. 1583 01:08:57,717 --> 01:08:59,719 WE DO RECEIVE GIFTS THERE. 1584 01:08:59,719 --> 01:09:04,057 THERE ARE PEOPLE WHO SEND US $20 1585 01:09:04,057 --> 01:09:06,560 CHECKS FOR GENERAL RESEARCH 1586 01:09:06,560 --> 01:09:07,127 SUPPORT. 1587 01:09:07,127 --> 01:09:09,196 AND CMR HAS A GIFT FUND. 1588 01:09:09,196 --> 01:09:12,465 THAT'S ONE OF THE THINGS WE DID 1589 01:09:12,465 --> 01:09:16,670 ONE OF THE FIRST THINGS WE DID 1590 01:09:16,670 --> 01:09:19,206 IN MCRR IF YOU KNOW SOMEONE WITH 1591 01:09:19,206 --> 01:09:20,507 A COUPLE BILLION LAYING AROUND 1592 01:09:20,507 --> 01:09:22,309 WE'RE HAPPY TO TALK TO THEM. 1593 01:09:22,309 --> 01:09:23,944 WE CAN'T SOLICIT THE GIFT BUT WE 1594 01:09:23,944 --> 01:09:25,779 HAVE A GIFT FUND TO WHICH THEY 1595 01:09:25,779 --> 01:09:26,146 CAN CONTRIBUTE. 1596 01:09:26,146 --> 01:09:27,714 THERE'S WAYS FOR THE PUBLIC TO 1597 01:09:27,714 --> 01:09:30,784 INTERACT WITH US AS WELL. 1598 01:09:30,784 --> 01:09:31,551 >> OKAY. 1599 01:09:31,551 --> 01:09:32,485 WELL, THANK YOU FOR YOUR GREAT 1600 01:09:32,485 --> 01:09:37,591 QUESTIONS AND WE'LL MOVE ON. 1601 01:09:37,591 --> 01:09:38,892 >> ALL RIGHT. 1602 01:09:38,892 --> 01:09:40,594 SO WE'RE NOW GOING TO HEAR MORE 1603 01:09:40,594 --> 01:09:42,596 ABOUT NICHD'S SUPPORT OF 1604 01:09:42,596 --> 01:09:43,163 TRAINING IN OUR EXTRAMURAL 1605 01:09:43,163 --> 01:09:46,633 PROGRAM. 1606 01:09:46,633 --> 01:09:52,205 YOU PROBABLY REMEMBER AT THE 1607 01:09:52,205 --> 01:09:57,777 JANUARY COUNCIL MEETING AN 1608 01:09:57,777 --> 01:09:59,112 EXTRAMURAL TRAINING WORK GROUP 1609 01:09:59,112 --> 01:10:00,447 IS SUPPORTING TO CHANGE THE 1610 01:10:00,447 --> 01:10:01,681 WORKFORCE OF THE FUTURE. 1611 01:10:01,681 --> 01:10:04,818 WE HAD A LONG DISCUSSION WITH 1612 01:10:04,818 --> 01:10:09,189 YOU ABOUT THIS TOPIC IN JANUARY. 1613 01:10:09,189 --> 01:10:10,824 NOW WE'LL HEAR FOLLOW-UP FROM 1614 01:10:10,824 --> 01:10:15,128 THE WORK GROUP AND SPEAKERS 1615 01:10:15,128 --> 01:10:17,297 INCLUDE DR. GINDHART OF THE 1616 01:10:17,297 --> 01:10:18,565 DIRECTOR OF THE EXTRAMURAL 1617 01:10:18,565 --> 01:10:21,601 ACTIVITIES AND CO-CHAIR OF THE 1618 01:10:21,601 --> 01:10:24,938 EXTRAMURAL TRAINING WORK GROUP 1619 01:10:24,938 --> 01:10:35,482 AND DR. LESLY SAMEDY BATES A 1620 01:10:35,482 --> 01:10:37,817 MEMBER OF THE WORK GROUP. 1621 01:10:37,817 --> 01:10:44,824 >> THANK YOU, REBEKAH AND 1622 01:10:44,824 --> 01:10:45,358 DR. BIANCHI TO GIVE US AN 1623 01:10:45,358 --> 01:10:45,992 OPPORTUNITY TO TALK ABOUT OUR 1624 01:10:45,992 --> 01:10:46,626 PROGRESS IN OUR TRAINING AND 1625 01:10:46,626 --> 01:10:47,160 CAREER DEVELOPMENT GOALS. 1626 01:10:47,160 --> 01:10:48,561 THANK YOU ALL FOR YOUR ATTENTION 1627 01:10:48,561 --> 01:10:48,895 AS WELL. 1628 01:10:48,895 --> 01:10:52,232 WHAT I'M GOING TO DO IS TALK 1629 01:10:52,232 --> 01:10:54,067 ABOUT OUR PROGRESS SINCE THE 1630 01:10:54,067 --> 01:10:55,435 COUNCIL PRESENTATION IN JANUARY 1631 01:10:55,435 --> 01:10:56,936 AND LESLY WILL TALK ABOUT HER 1632 01:10:56,936 --> 01:11:00,273 WORK WITH THE TRAINEES OF THE 1633 01:11:00,273 --> 01:11:00,974 CLINICAL PHARMACOLOGY TRAINING 1634 01:11:00,974 --> 01:11:03,109 NETWORK AND THEN WE'LL HAVE TIME 1635 01:11:03,109 --> 01:11:13,353 FOR QUESTIONS. 1636 01:11:26,333 --> 01:11:28,101 AND WE'LL HAVE TALK ON WHAT WE 1637 01:11:28,101 --> 01:11:30,437 INTEND TO DO IN THE FUTURE AND 1638 01:11:30,437 --> 01:11:32,939 WE'LL TALK A BIT ABOUT THE 1639 01:11:32,939 --> 01:11:35,041 RESULTS OF OUR REQUEST FOR 1640 01:11:35,041 --> 01:11:36,576 INFORMATION IN WHICH WE ASK THE 1641 01:11:36,576 --> 01:11:42,615 COMMUNITY FOR FEEDBACK ON THE 1642 01:11:42,615 --> 01:11:47,120 RECOMMENDATIONS APPROVED BY 1643 01:11:47,120 --> 01:11:49,356 COUNCIL IN JANUARY. 1644 01:11:49,356 --> 01:11:53,693 JUST TO GIVE BACKGROUND THE LAST 1645 01:11:53,693 --> 01:11:55,362 TIME NICHD LOOKED HOLISTICALLY 1646 01:11:55,362 --> 01:11:58,631 AT THE TRAINING ACTIVITIES WAS 1647 01:11:58,631 --> 01:12:00,266 2016 AND A LOT HAS HAPPENED 1648 01:12:00,266 --> 01:12:02,469 SINCE 2016. 1649 01:12:02,469 --> 01:12:05,305 I THINK WE WOULD ALL AGREE TO 1650 01:12:05,305 --> 01:12:05,872 THAT. 1651 01:12:05,872 --> 01:12:08,775 IN RESPONSE TO THAT, THAT TIME 1652 01:12:08,775 --> 01:12:12,278 GAP AND TO GUIDANCE IN THE NIH 1653 01:12:12,278 --> 01:12:15,115 AND NICHD STRATEGIC PLANS A 1654 01:12:15,115 --> 01:12:16,516 WORKING GROUP COMPOSED OF NICHD 1655 01:12:16,516 --> 01:12:23,156 STAFF WAS CREATED IN JANUARY 1656 01:12:23,156 --> 01:12:27,894 2023 AND THE GOAL OF THAT GROUP 1657 01:12:27,894 --> 01:12:31,564 WAS TO HELP NICHD -- IDENTIFY 1658 01:12:31,564 --> 01:12:32,465 OPPORTUNITIES FOR EXTRAMURAL 1659 01:12:32,465 --> 01:12:33,400 TRAINING AND CAREER DEVELOPMENT 1660 01:12:33,400 --> 01:12:38,438 PROGRAMS TO PREPARE THE FUTURE 1661 01:12:38,438 --> 01:12:40,407 WORKFORCE TO ADDRESS NICHD'S 1662 01:12:40,407 --> 01:12:41,641 MISSION AND ANOTHER WAY OF 1663 01:12:41,641 --> 01:12:44,644 PUTTING THIS IS TO NOT JUST 1664 01:12:44,644 --> 01:12:46,846 THINK ABOUT WHAT NICHD IS 1665 01:12:46,846 --> 01:12:49,883 SUPPORTING BUT WHO ARE THE 1666 01:12:49,883 --> 01:12:50,483 SCIENTISTS PARTICIPATING IN 1667 01:12:50,483 --> 01:12:52,685 NICHD RESEARCH AND WHERE THEY 1668 01:12:52,685 --> 01:12:53,153 ARE WORKING. 1669 01:12:53,153 --> 01:12:55,021 SO THE TRAINING AND CAREER 1670 01:12:55,021 --> 01:12:57,157 DEVELOPMENT WORK GROUP MET FROM 1671 01:12:57,157 --> 01:13:00,427 JANUARY TO DECEMBER 2023 TO 1672 01:13:00,427 --> 01:13:02,462 DEVELOP SIX RECOMMENDATIONS AND 1673 01:13:02,462 --> 01:13:04,497 32 ACTION ITEMS ACROSS THREE KEY 1674 01:13:04,497 --> 01:13:05,331 AREAS. 1675 01:13:05,331 --> 01:13:07,867 SO ONE OF THESE AREAS WAS CAREER 1676 01:13:07,867 --> 01:13:08,168 DEVELOPMENT. 1677 01:13:08,168 --> 01:13:13,139 WE TALKED ABOUT THAT AT THE LAST 1678 01:13:13,139 --> 01:13:15,408 COUNCIL. 1679 01:13:15,408 --> 01:13:18,611 PRE-AND POST-DOCTORAL TRAINING 1680 01:13:18,611 --> 01:13:24,717 PROGRAMS AND ALIGNING OUR 1681 01:13:24,717 --> 01:13:26,152 STRATEGIC RESEARCH TO FUND THE 1682 01:13:26,152 --> 01:13:27,120 NEXT GENERATION OF RESEARCH. 1683 01:13:27,120 --> 01:13:28,655 TO REMIND YOU OF WHAT WE TALKED 1684 01:13:28,655 --> 01:13:31,057 ABOUT AT LAST COUNCIL WAS 1685 01:13:31,057 --> 01:13:34,260 PRESENTED BY WORKING GROUP 1686 01:13:34,260 --> 01:13:36,596 CO-CHAIR TERESA CRUZ, WE HAD SIX 1687 01:13:36,596 --> 01:13:37,130 GOALS. 1688 01:13:37,130 --> 01:13:39,466 ONE TO RETHINK HOW WE TALK ABOUT 1689 01:13:39,466 --> 01:13:41,835 OUTCOME AND SUCCESSFUL OUTCOME 1690 01:13:41,835 --> 01:13:44,737 IS NOT JUST GETTING AN R01. 1691 01:13:44,737 --> 01:13:45,738 THERE ARE SUCCESSFUL OUTCOMES 1692 01:13:45,738 --> 01:13:48,208 BESIDES THAT AND THINK HOW TO DO 1693 01:13:48,208 --> 01:13:51,344 TRAINING, K12s AND B32s TO 1694 01:13:51,344 --> 01:13:58,284 CREATE A COMMUNITY OF SUPPORTED 1695 01:13:58,284 --> 01:13:59,118 RESEARCH. 1696 01:13:59,118 --> 01:14:01,855 DIVERSIFY THE RESEARCH AND 1697 01:14:01,855 --> 01:14:05,859 REINVIGORATE THE LOAN REPAYMENT 1698 01:14:05,859 --> 01:14:08,828 PROGRAMS THAT SUPPORT NIH FUNDED 1699 01:14:08,828 --> 01:14:11,097 RESEARCH AT NICHD AND THEN TO 1700 01:14:11,097 --> 01:14:16,369 USE THE TRAINING PROGRAMS TO 1701 01:14:16,369 --> 01:14:18,605 SUPPORT STRATEGIC -- 1702 01:14:18,605 --> 01:14:22,108 [NO AUDIO] 1703 01:14:22,108 --> 01:14:25,645 TO RECAP IN JANUARY THESE 1704 01:14:25,645 --> 01:14:27,046 RECOMMENDATIONS WERE PRESENTED 1705 01:14:27,046 --> 01:14:32,519 AND APPROVED BY COUNCIL AND IN 1706 01:14:32,519 --> 01:14:35,121 FEBRUARY THE DIVISION OF 1707 01:14:35,121 --> 01:14:37,490 EXTRAMURAL RESEARCH, ACTIVITIES 1708 01:14:37,490 --> 01:14:39,792 IMPLEMENTATION WORKING GROUP WAS 1709 01:14:39,792 --> 01:14:41,027 FORMED TO SUPPORT THAT 1710 01:14:41,027 --> 01:14:43,830 RECOMMENDATION TO THE ACTION 1711 01:14:43,830 --> 01:14:44,130 ITEMS. 1712 01:14:44,130 --> 01:14:47,800 AND WE ALSO RELEASED AN RFI 1713 01:14:47,800 --> 01:14:51,771 WE'LL TALK ABOUT AT THE END OF 1714 01:14:51,771 --> 01:14:54,607 FEBRUARY GAVE WEEKS TO RESPOND 1715 01:14:54,607 --> 01:15:01,347 TO THAT RFI. 1716 01:15:01,347 --> 01:15:03,383 AS OF TODAY THE IMPLEMENTATION 1717 01:15:03,383 --> 01:15:07,053 WORKING GROUP IS 20 MEMBERS FROM 1718 01:15:07,053 --> 01:15:11,324 ACROSS THE EXTRAMURAL INSTITUTE 1719 01:15:11,324 --> 01:15:13,660 AND THERE ARE SUBGROUPS. 1720 01:15:13,660 --> 01:15:16,963 THE FIRST SUBGROUP IS STRATEGIC 1721 01:15:16,963 --> 01:15:19,666 PRIORITIES, OUTCOMES AND 1722 01:15:19,666 --> 01:15:19,933 REPAYMENT. 1723 01:15:19,933 --> 01:15:22,535 THE SECOND SUBGROUP IS COMMUNITY 1724 01:15:22,535 --> 01:15:24,637 AND DIVERSITY TRAINING THEN THE 1725 01:15:24,637 --> 01:15:26,673 THIRD SUBGROUP IS THE 1726 01:15:26,673 --> 01:15:27,240 INSTITUTIONAL TRAINING AND 1727 01:15:27,240 --> 01:15:32,445 CAREER DEVELOPMENT. 1728 01:15:32,445 --> 01:15:37,917 I'M LUCKY TO BE A CO-LEAD OF 1729 01:15:37,917 --> 01:15:40,153 THIS GROUP WITH OTHERS. 1730 01:15:40,153 --> 01:15:42,322 THE FIRST SUBGROUP IS STRATEGIC 1731 01:15:42,322 --> 01:15:44,591 PRIORITIES, OUTCOME AND LOAN 1732 01:15:44,591 --> 01:15:45,258 REPAYMENT. 1733 01:15:45,258 --> 01:15:46,993 THE SECOND SUBGROUP IS COMMUNITY 1734 01:15:46,993 --> 01:15:49,295 AND DIVERSITY HOW TO BUILD A 1735 01:15:49,295 --> 01:15:52,131 COMMUNITY OF NICHD TRAINEES AND 1736 01:15:52,131 --> 01:15:54,167 CREATE THAT NICHD IDENTITY AND 1737 01:15:54,167 --> 01:15:58,004 THEN THE THIRD SUBGROUP LED BY 1738 01:15:58,004 --> 01:16:03,943 SUSAN IS THE T32 AND K12 GROUP 1739 01:16:03,943 --> 01:16:06,646 AND IT'S THE CADENCE THE GROUP 1740 01:16:06,646 --> 01:16:09,616 MEETS ONCE A MONTH AND SUBGROUP 1741 01:16:09,616 --> 01:16:11,117 MEETINGS EACH MONTH AND SOME 1742 01:16:11,117 --> 01:16:14,087 PEOPLE WHO AREN'T ON THE SLIDE 1743 01:16:14,087 --> 01:16:16,789 THAT SHOULD BE RECOGNIZED AS 1744 01:16:16,789 --> 01:16:18,958 WELL ARE CONTRACTORS SUPPORT 1745 01:16:18,958 --> 01:16:19,759 FROM GUIDE HOUSE. 1746 01:16:19,759 --> 01:16:22,195 THEY HAVE BEEN HELPFUL IN THE 1747 01:16:22,195 --> 01:16:24,631 PROGRAM MANAGEMENT SIDE OF 1748 01:16:24,631 --> 01:16:28,334 THINGS AND THEN NICHD STAFF LIKE 1749 01:16:28,334 --> 01:16:31,104 JASMINE AND ASHLEY BARNES HAVE 1750 01:16:31,104 --> 01:16:34,507 HELPED KEEP ON TRACK OF 1751 01:16:34,507 --> 01:16:34,807 SCHEDULING. 1752 01:16:34,807 --> 01:16:38,811 SO WHAT I'D LIKE TO DO NOW IS 1753 01:16:38,811 --> 01:16:40,179 BRIEFLY HIGHLIGHT WE'VE ONLY A 1754 01:16:40,179 --> 01:16:41,447 COUPLE MONTHS UNDER OUR BELT BUT 1755 01:16:41,447 --> 01:16:47,120 HAVE COME UP WITH IDEAS HOW TO 1756 01:16:47,120 --> 01:16:48,621 MOVE FORWARD AND SET HIGH 1757 01:16:48,621 --> 01:16:49,355 PRIORITY GOALS AND LOWER 1758 01:16:49,355 --> 01:16:51,124 PRIORITY GOALS AND WE'RE WORKING 1759 01:16:51,124 --> 01:16:55,795 THROUGH THAT. 1760 01:16:55,795 --> 01:17:01,334 FOR THE FIRST SUBGROUP REMEMBER 1761 01:17:01,334 --> 01:17:03,870 THIS SUBGROUP HAS THEE 1762 01:17:03,870 --> 01:17:04,537 RECOMMENDATIONS AND THERE'S ONLY 1763 01:17:04,537 --> 01:17:09,609 11 ACTION ITEMS. 1764 01:17:09,609 --> 01:17:13,946 SO TWO ACTION ITEMS ARE TO 1765 01:17:13,946 --> 01:17:15,114 EXPAND THE LOAN REPAYMENT 1766 01:17:15,114 --> 01:17:17,917 PROGRAMS TO INCLUDE THE L32 1767 01:17:17,917 --> 01:17:18,418 FUNDING MECHANISM. 1768 01:17:18,418 --> 01:17:20,620 THAT'S CLINICAL RESEARCH FOR 1769 01:17:20,620 --> 01:17:23,890 INDIVIDUALS FROM DISADVANTAGED 1770 01:17:23,890 --> 01:17:24,390 BACKGROUNDS. 1771 01:17:24,390 --> 01:17:30,363 SO NICHD JOINED THAT IN LATE 1772 01:17:30,363 --> 01:17:35,535 2023 AND WE HOPE PENDING THE 1773 01:17:35,535 --> 01:17:39,806 RECEIPT OF MERITORIOUS 1774 01:17:39,806 --> 01:17:41,808 APPLICATIONS TO LOOK AT THAT AND 1775 01:17:41,808 --> 01:17:43,276 THE SELECTION PROCESS TO INCLUDE 1776 01:17:43,276 --> 01:17:44,510 REPRESENTATION FROM OUR OFFICE 1777 01:17:44,510 --> 01:17:46,446 OF HEALTH EQUITY AND THE 1778 01:17:46,446 --> 01:17:48,381 TRAINING COMMITTEE TEAM. 1779 01:17:48,381 --> 01:17:50,683 JUST TO HIGHLIGHT ONE OF THE 1780 01:17:50,683 --> 01:17:56,355 ITEMS THAT'S IN PROGRESS IS TO 1781 01:17:56,355 --> 01:17:58,524 TRACK AND ENCOURAGE IMPORTANT 1782 01:17:58,524 --> 01:17:59,225 CAREER TRAJECTORIES TO BE ABLE 1783 01:17:59,225 --> 01:18:00,960 TO TRACK THE OUTCOMES OF PEOPLE 1784 01:18:00,960 --> 01:18:06,466 WHO WE'VE SUPPORTED OVER THE 1785 01:18:06,466 --> 01:18:09,635 YEARS NOT JUST THROUGH WHAT 1786 01:18:09,635 --> 01:18:11,104 GRANTS THEY'VE GOTTEN BUT THEIR 1787 01:18:11,104 --> 01:18:16,676 CAREER OUTCOMES. 1788 01:18:16,676 --> 01:18:19,779 SO, THE SECOND GROUP IS A GROUP 1789 01:18:19,779 --> 01:18:22,148 I'VE BEEN INVOLVED WITH A LOT IS 1790 01:18:22,148 --> 01:18:24,283 THE COMMUNITY AND DIVERSITY 1791 01:18:24,283 --> 01:18:26,419 SUBGROUP AND WE'RE COMING UP 1792 01:18:26,419 --> 01:18:29,956 WITH WAYS TO CREATE COMMUNITY 1793 01:18:29,956 --> 01:18:30,890 AMONGST TRAINEES AND TO 1794 01:18:30,890 --> 01:18:34,327 DIVERSIFY NICHD'S REACH IN THE 1795 01:18:34,327 --> 01:18:35,128 TRAINING COMMUNITY. 1796 01:18:35,128 --> 01:18:37,263 ONE THING WE'VE DONE SO FAR IS 1797 01:18:37,263 --> 01:18:40,333 TO HAVE THE OFFICE OF HEALTH 1798 01:18:40,333 --> 01:18:42,401 EQUITY DEVELOP A SYSTEMATIC 1799 01:18:42,401 --> 01:18:43,836 PROCESS FOR EVALUATING AND 1800 01:18:43,836 --> 01:18:47,206 SIGNING ON TO DIVERSITY-FOCUSSED 1801 01:18:47,206 --> 01:18:50,710 NOTICES OF FUNDING OPPORTUNITY 1802 01:18:50,710 --> 01:18:52,311 OR NOFOs. 1803 01:18:52,311 --> 01:18:55,982 THE IDEA IS THERE'S A GROUP OF 1804 01:18:55,982 --> 01:18:57,250 COMMITTEE OF STAFF FROM ACROSS 1805 01:18:57,250 --> 01:18:58,785 THE INSTITUTE WHO CAN LOOK AT 1806 01:18:58,785 --> 01:19:00,520 FUNDING OPPORTUNITIES THAT ARE 1807 01:19:00,520 --> 01:19:01,654 NOT FOCUSSED ON A SPECIFIC 1808 01:19:01,654 --> 01:19:04,257 SCIENTIFIC AREA BUT THE TRAINEES 1809 01:19:04,257 --> 01:19:06,292 COULD BE IN ANY SCIENTIFIC AREA 1810 01:19:06,292 --> 01:19:11,130 THAT'S SUPPORTED BY US AND TO 1811 01:19:11,130 --> 01:19:12,598 MANAGE THE PART PASSION IN THOSE 1812 01:19:12,598 --> 01:19:17,837 OPPORTUNITIES. 1813 01:19:17,837 --> 01:19:18,771 THERE'S A LOT OF THINGS IN 1814 01:19:18,771 --> 01:19:20,206 PROGRESS. 1815 01:19:20,206 --> 01:19:21,407 SOME ARE FURTHER ALONG THAN 1816 01:19:21,407 --> 01:19:22,108 OTHERS. 1817 01:19:22,108 --> 01:19:23,609 WE'RE LOOKING AT HOSTING 1818 01:19:23,609 --> 01:19:25,578 WORKSHOP FOR FELLOWSHIP TRAINEES 1819 01:19:25,578 --> 01:19:27,880 AT NICHD. 1820 01:19:27,880 --> 01:19:29,382 WE'D LIKE TO CREATE A 1821 01:19:29,382 --> 01:19:31,184 DISTRIBUTION LIST OF SCHOLARS 1822 01:19:31,184 --> 01:19:34,587 WHICH IS SURPRISINGLY 1823 01:19:34,587 --> 01:19:35,822 COMPLICATED AND TO ADVERTISE 1824 01:19:35,822 --> 01:19:37,890 NICHD WIDE EVENTS, FUNDING 1825 01:19:37,890 --> 01:19:38,991 OPPORTUNITIES, MAYBE THROUGH A 1826 01:19:38,991 --> 01:19:41,360 NEWSLETTER OR SOMETHING LIKE 1827 01:19:41,360 --> 01:19:43,329 THAT AND TO DO EQUITABLE 1828 01:19:43,329 --> 01:19:44,564 OUTREACH ACROSS INSTITUTIONS TO 1829 01:19:44,564 --> 01:19:47,066 INCREASE THE NUMBER OF 1830 01:19:47,066 --> 01:19:48,534 APPLICATIONS OF INSTITUTIONS 1831 01:19:48,534 --> 01:19:49,368 WITHOUT SIGNIFICANT NICHD 1832 01:19:49,368 --> 01:19:49,602 FUNDING. 1833 01:19:49,602 --> 01:19:52,638 ONE WAY WE DO THAT IS THROUGH 1834 01:19:52,638 --> 01:19:58,110 OUTREACH AND SCIENTIFIC 1835 01:19:58,110 --> 01:19:59,579 CONFERENCES, SCIENCE CONFERENCES 1836 01:19:59,579 --> 01:20:07,720 AND MORE FOCUSSED CONFERENCES. 1837 01:20:07,720 --> 01:20:10,256 FINALLY, THIS GROUP GETS A LOT 1838 01:20:10,256 --> 01:20:12,592 OF INTEREST HOW WE SUPPORT K12s 1839 01:20:12,592 --> 01:20:14,994 AND P32s AT NICHD. 1840 01:20:14,994 --> 01:20:19,298 AND SO ONE OF THE THINGS WE'VE 1841 01:20:19,298 --> 01:20:20,333 ACCOMPLISHED AND THIS 1842 01:20:20,333 --> 01:20:22,001 ACCOMPLISHMENT I'LL TALK ABOUT 1843 01:20:22,001 --> 01:20:23,236 IS TO ESTABLISH A DIFFERENTIAL 1844 01:20:23,236 --> 01:20:25,504 PAY LINE FOR NEW VERSUS RENEWAL 1845 01:20:25,504 --> 01:20:29,175 PROGRAMS BUT I THINK A WAY TO 1846 01:20:29,175 --> 01:20:32,478 THINK ABOUT IT IS THAT THE SCORE 1847 01:20:32,478 --> 01:20:34,480 THE APPLICATION GETS IS ONE 1848 01:20:34,480 --> 01:20:34,947 PIECE OF INFORMATION. 1849 01:20:34,947 --> 01:20:36,616 IF YOU JUST LOOK AT THE NUMBER 1850 01:20:36,616 --> 01:20:38,584 THE APPLICATION GETS, THE SCORE 1851 01:20:38,584 --> 01:20:39,919 YOU'RE LEAVING OUT A LOT OF 1852 01:20:39,919 --> 01:20:42,488 OTHER INFORMATION THAT CAN BE 1853 01:20:42,488 --> 01:20:43,189 USEFUL IN COMING UP WITH 1854 01:20:43,189 --> 01:20:49,161 FUNDING. 1855 01:20:49,161 --> 01:20:50,997 SOME OF THE ACTION ITEMS IN 1856 01:20:50,997 --> 01:20:52,531 VARIOUS STAGES OF PROGRESS IS TO 1857 01:20:52,531 --> 01:20:55,635 CONSIDER THE POSSIBILITY OF 1858 01:20:55,635 --> 01:20:58,037 CLUSTERING NEW AND RENEWAL T32 1859 01:20:58,037 --> 01:21:02,341 APPLICATION SEPARATELY IN PEER 1860 01:21:02,341 --> 01:21:03,843 REVIEW SO RENEW APPLICATIONS ARE 1861 01:21:03,843 --> 01:21:06,913 COMPARED TO RENEWALS AND THE 1862 01:21:06,913 --> 01:21:10,783 LAST ONE IS AN EVALUATION METRIC 1863 01:21:10,783 --> 01:21:15,154 TO HELP DECIDE WHEN CAN A K12 1864 01:21:15,154 --> 01:21:15,922 DECLARE VICTORY. 1865 01:21:15,922 --> 01:21:22,762 HAS IT DEVELOPED A COMMUNITY OR 1866 01:21:22,762 --> 01:21:24,830 SHOULD THESE PROGRAMS GO ON FOR 1867 01:21:24,830 --> 01:21:26,565 LONG PERIOD OF TIME AND WE'RE 1868 01:21:26,565 --> 01:21:30,970 NOT SUGGESTING TERM LIMITS FOR 1869 01:21:30,970 --> 01:21:31,837 K12. 1870 01:21:31,837 --> 01:21:35,107 WE'RE SUGGESTING AS WHEN K12 1871 01:21:35,107 --> 01:21:38,244 PROGRAMS ARE RENEWED EITHER 1872 01:21:38,244 --> 01:21:44,016 THROUGH APPLICATIONS OR NOFOs 1873 01:21:44,016 --> 01:21:44,784 THERE'S JUSTIFICATION MADE. 1874 01:21:44,784 --> 01:21:46,185 FINALLY THE LAST THING I WANT TO 1875 01:21:46,185 --> 01:21:50,723 TALK ABOUT IS OUR REQUEST FOR 1876 01:21:50,723 --> 01:21:51,023 INFORMATION. 1877 01:21:51,023 --> 01:21:52,525 WE PUBLISHED THE RFI AT THE END 1878 01:21:52,525 --> 01:21:55,728 OF FEBRUARY AND THE RESULTS CAME 1879 01:21:55,728 --> 01:21:56,529 IN IN EARLY MAY. 1880 01:21:56,529 --> 01:21:59,098 SOME OF THIS IS RELATIVELY FRESH 1881 01:21:59,098 --> 01:22:06,605 BUT WE'VE DONE INITIAL ANALYSIS 1882 01:22:06,605 --> 01:22:10,910 AND WE WOULD HAVE LIKED TO HAVE 1883 01:22:10,910 --> 01:22:12,845 GOTTEN A FEW MORE RESPONSES AND 1884 01:22:12,845 --> 01:22:14,914 SEVEN RESPONSES WERE FROM 1885 01:22:14,914 --> 01:22:18,317 INDIVIDUALS AND SIX WERE ON 1886 01:22:18,317 --> 01:22:21,320 BEHALF OF GROUPS EITHER INTEREST 1887 01:22:21,320 --> 01:22:26,325 GROUPS OR ACADEMIC INSTITUTIONS. 1888 01:22:26,325 --> 01:22:28,961 THE GROUPS OR INSTITUTIONS 1889 01:22:28,961 --> 01:22:31,130 REPRESENTED THREE WERE PROVIDERS 1890 01:22:31,130 --> 01:22:33,032 AND I WOULD INCLUDE HOSPITALS IN 1891 01:22:33,032 --> 01:22:37,136 THIS GROUP. 1892 01:22:37,136 --> 01:22:42,608 ACADEMIC INSTITUTIONS AND FOUR 1893 01:22:42,608 --> 01:22:44,810 SPECIAL INTEREST GROUPS AND THE 1894 01:22:44,810 --> 01:22:47,046 PRIZES WERE ANONYMOUS SO WE 1895 01:22:47,046 --> 01:22:49,181 WON'T BREAK IT UP. 1896 01:22:49,181 --> 01:22:50,883 DESPITE ONLY HAVING 13 RESPONSES 1897 01:22:50,883 --> 01:22:53,452 EACH OF THE SIX GOALS THAT WERE 1898 01:22:53,452 --> 01:22:55,888 TALKED ABOUT IN JANUARY COUNCIL 1899 01:22:55,888 --> 01:22:57,423 RECEIVED RFI RESPONSES. 1900 01:22:57,423 --> 01:22:58,524 PEOPLE COMMENTED ON THOSE WHEN 1901 01:22:58,524 --> 01:22:59,959 YOU WENT THROUGH THE RESPONSES 1902 01:22:59,959 --> 01:23:00,526 THEMSELVES. 1903 01:23:00,526 --> 01:23:03,062 YOU CAN SEE THERE'S ONE OUTLIER. 1904 01:23:03,062 --> 01:23:08,467 PEOPLE WERE VERY EXCITED TO TALK 1905 01:23:08,467 --> 01:23:12,338 ABOUT THE RT32 AND K12 PROGRAMS 1906 01:23:12,338 --> 01:23:14,974 AND HOW WE SUPPORT THEM. 1907 01:23:14,974 --> 01:23:17,276 THERE WERE SOME THINGS THAT I 1908 01:23:17,276 --> 01:23:19,311 THINK WILL HELP US GOING FORWARD 1909 01:23:19,311 --> 01:23:21,380 AS YOU CAN IMAGINE HAVING TERM 1910 01:23:21,380 --> 01:23:22,715 LIMITS FOR TRAINING GRANTS WAS 1911 01:23:22,715 --> 01:23:24,617 NOT A POPULAR OPTION. 1912 01:23:24,617 --> 01:23:28,721 AND SO THAT'S SOMETHING THAT WE 1913 01:23:28,721 --> 01:23:32,525 WOULD CONSIDER MOVING FORWARD OF 1914 01:23:32,525 --> 01:23:35,127 COURSE BUT MANY EVERY ONE OF 1915 01:23:35,127 --> 01:23:39,065 THESE TOPICS GOT SOME FEEDBACK. 1916 01:23:39,065 --> 01:23:42,034 SO WHAT WE DID IS WORKED WITH 1917 01:23:42,034 --> 01:23:43,936 THE GUIDE HOUSE TEAM TO TRY TO 1918 01:23:43,936 --> 01:23:47,039 COME UP WITH ACTIONABLE ITEMS WE 1919 01:23:47,039 --> 01:23:49,642 COULD THINK ABOUT AS WE MOVE 1920 01:23:49,642 --> 01:23:51,677 FORWARD IN OUR IMPLEMENTATION 1921 01:23:51,677 --> 01:23:51,911 PLAN. 1922 01:23:51,911 --> 01:23:53,612 FOR EXAMPLE IN RETHINKING HOW WE 1923 01:23:53,612 --> 01:23:54,947 TALKED ABOUT OUTCOMES. 1924 01:23:54,947 --> 01:24:00,453 WE GOT LOTS OF EXAMPLES FOR 1925 01:24:00,453 --> 01:24:02,521 METRIC FOR DETERMINING A 1926 01:24:02,521 --> 01:24:05,291 SUCCESSFUL RESEARCH CAREER. 1927 01:24:05,291 --> 01:24:07,126 FOR REINVIGORATING INSTITUTIONAL 1928 01:24:07,126 --> 01:24:08,894 AND CAREER DEVELOPMENT PROGRAMS. 1929 01:24:08,894 --> 01:24:10,129 THERE WAS TALK ABOUT WAYS THERE 1930 01:24:10,129 --> 01:24:15,401 COULD BE PARTNERSHIPS BETWEEN 1931 01:24:15,401 --> 01:24:18,537 INDIVIDUAL INSTITUTIONAL 1932 01:24:18,537 --> 01:24:24,610 PROGRAMS AND HOW THAT COWL BE 1933 01:24:24,610 --> 01:24:28,547 USED IN A SYNERGISTIC WAYS TO 1934 01:24:28,547 --> 01:24:30,816 MAKE THE PROGRAMS BETTER. 1935 01:24:30,816 --> 01:24:32,184 TO CREATE A COMMUNITY AMONGST 1936 01:24:32,184 --> 01:24:36,355 TRAINEES TO PERHAPS COME UP WITH 1937 01:24:36,355 --> 01:24:39,125 FORMAL OPPORTUNITIES FOR 1938 01:24:39,125 --> 01:24:42,628 TRAINEES TO ANTIACT AND GET 1939 01:24:42,628 --> 01:24:44,130 OTHERS SUPPORTED BY NICHD TO THE 1940 01:24:44,130 --> 01:24:54,540 LONE REPAYMENT PROGRAM. 1941 01:24:56,709 --> 01:24:57,743 AND I NOUTH THIS WAS INTERESTING 1942 01:24:57,743 --> 01:25:01,647 TO USE THE TRAINING AND CAREER 1943 01:25:01,647 --> 01:25:03,115 DEVELOPMENT TO SUPPORT STRATEGIC 1944 01:25:03,115 --> 01:25:04,016 RESEARCH INITIATIVES OF THE 1945 01:25:04,016 --> 01:25:06,051 INSTITUTE TO PERHAPS FIGURE OUT 1946 01:25:06,051 --> 01:25:08,921 WAYS TO LINK TRAINING NETWORKS 1947 01:25:08,921 --> 01:25:12,491 TO EXISTING RESEARCH NETWORKS 1948 01:25:12,491 --> 01:25:16,695 AND EMPHASIZE MULTI-DISCIPLINARY 1949 01:25:16,695 --> 01:25:18,597 TEAM SCIENCE COMPONENTS OF THE 1950 01:25:18,597 --> 01:25:28,741 GRANTS. 1951 01:25:33,779 --> 01:25:37,449 AND WE LOOK AT SOME OF THE 1952 01:25:37,449 --> 01:25:38,250 FINDINGS AND TALK ABOUT WORK 1953 01:25:38,250 --> 01:25:42,755 HEARING FROM TRAINEES THEMSELVES 1954 01:25:42,755 --> 01:25:44,156 ABOUT WHAT THEIR CHALLENGES AND 1955 01:25:44,156 --> 01:25:54,700 OPPORTUNITIES ARE BUT THANK YOU. 1956 01:26:24,263 --> 01:26:27,066 >> GOOD MORNING AND THANK YOU TO 1957 01:26:27,066 --> 01:26:33,505 THE NICHD TEAM AND I'M LESLY 1958 01:26:33,505 --> 01:26:34,006 SAMEDY BATES. 1959 01:26:34,006 --> 01:26:37,409 IS THIS IS SPONSORED BY THE 1960 01:26:37,409 --> 01:26:40,179 THERAPEUTICS BRANCH AND WE HOPE 1961 01:26:40,179 --> 01:26:41,680 TO SHARE INFORMATION WITH YOU 1962 01:26:41,680 --> 01:26:47,152 ABOUT THE TRAINEES PERSPECTIVES 1963 01:26:47,152 --> 01:26:51,023 AND MAYBE WE KCAN INVIGORATE TH 1964 01:26:51,023 --> 01:26:56,362 APPROACH TO TRAINING AND 1965 01:26:56,362 --> 01:26:57,663 TRAINEES' EXPERIENCE. 1966 01:26:57,663 --> 01:26:59,098 I'LL BE OFFERING BRIEF 1967 01:26:59,098 --> 01:26:59,865 INFORMATION BEFORE MOVING ON TO 1968 01:26:59,865 --> 01:27:01,333 THE HIGHLIGHT OF THE DISCUSSION 1969 01:27:01,333 --> 01:27:03,869 AND RESULTS OF OUR SURVEY. 1970 01:27:03,869 --> 01:27:06,605 I'LL ALSO SHARE PLANS FOR 1971 01:27:06,605 --> 01:27:09,041 UTILIZING THE SURVEY FINDINGS 1972 01:27:09,041 --> 01:27:11,110 AND DISCUSS THE FUTURE DIRECTION 1973 01:27:11,110 --> 01:27:15,281 OF OUR TRAINING PROGRAM. 1974 01:27:15,281 --> 01:27:18,450 THE TRAINING NETWORK IN 2011 IN 1975 01:27:18,450 --> 01:27:20,853 RESPONSE TO THE BEST 1976 01:27:20,853 --> 01:27:24,590 PHARMACEUTICALS FOR CHILDREN ACT 1977 01:27:24,590 --> 01:27:26,225 BPCA, IT REQUIRED PEDIATRIC 1978 01:27:26,225 --> 01:27:27,693 PHARMACOLOGISTS TO BE INCLUDED 1979 01:27:27,693 --> 01:27:29,028 IN EXISTING NIH CAREER 1980 01:27:29,028 --> 01:27:30,596 DEVELOPMENT PROGRAMS. 1981 01:27:30,596 --> 01:27:34,533 THE NETWORK WAS NATIONALLY A 1982 01:27:34,533 --> 01:27:39,104 CO-FUNDED PROGRAM IN PEDIATRIC 1983 01:27:39,104 --> 01:27:41,607 PHARMACOLOGY ALONGSIDE NIGMS AND 1984 01:27:41,607 --> 01:27:41,874 NIH. 1985 01:27:41,874 --> 01:27:46,211 AND IT'S NOW TRANSITIONED TO A 1986 01:27:46,211 --> 01:27:50,549 NICHD-ONLY FUNDED NETWORK 1987 01:27:50,549 --> 01:27:52,985 HOWEVER, THE TOOLS AND RESOURCES 1988 01:27:52,985 --> 01:27:54,953 ARE FOR ALL INTERESTED TRAINEES. 1989 01:27:54,953 --> 01:27:56,355 SEVERAL FELLOWS STILL 1990 01:27:56,355 --> 01:27:59,058 PARTICIPATE FROM OTHER 1991 01:27:59,058 --> 01:28:02,428 INSTITUTES AND I THINK THIS 1992 01:28:02,428 --> 01:28:04,063 TELLS US ABOUT THE BIGGER IMPACT 1993 01:28:04,063 --> 01:28:09,902 THAN ORIGINALLY ENVISIONED. 1994 01:28:09,902 --> 01:28:14,006 SO LISTED ARE ALL THE CURRENT 1995 01:28:14,006 --> 01:28:17,176 SITES OF CPTN. 1996 01:28:17,176 --> 01:28:21,280 IN BLUE WE HAVE T32 1997 01:28:21,280 --> 01:28:25,751 INSTITUTIONAL PHARMACOLOGY 1998 01:28:25,751 --> 01:28:25,951 SITES. 1999 01:28:25,951 --> 01:28:27,519 IF THE PINK SITES NEWLY MINTED 2000 01:28:27,519 --> 01:28:29,888 CAREER DEVELOPMENT PROGRAM AND 2001 01:28:29,888 --> 01:28:34,626 IN YELLOW SITE WE CONSIDER 2002 01:28:34,626 --> 01:28:35,194 AFFILIATE SITES. 2003 01:28:35,194 --> 01:28:37,463 THEY MAY NOT HAVE A TRADITIONAL 2004 01:28:37,463 --> 01:28:39,565 PHARMACOLOGY PROGRAM OR COME IN 2005 01:28:39,565 --> 01:28:42,634 THROUGH THE CLINICAL 2006 01:28:42,634 --> 01:28:43,068 PHARMACOLOGY NOFO. 2007 01:28:43,068 --> 01:28:45,070 THE SITES IN YELLOW INCLUDE 2008 01:28:45,070 --> 01:28:48,640 LOCATIONS FOR OUR PREDOCTORAL 2009 01:28:48,640 --> 01:28:51,076 AND POST-DOCTORAL INDIVIDUAL 2010 01:28:51,076 --> 01:28:51,977 FELLOWS AND. 2011 01:28:51,977 --> 01:28:53,078 K99 FELLOWS. 2012 01:28:53,078 --> 01:28:55,781 AND I WANTED TO A SHARE WITH THE 2013 01:28:55,781 --> 01:28:56,582 AFFILIATE SITE. 2014 01:28:56,582 --> 01:28:58,283 THEY BRING MORE DIVERSITY IN 2015 01:28:58,283 --> 01:29:00,686 TERMS OF BACKGROUND INTO THE 2016 01:29:00,686 --> 01:29:01,553 NETWORK. 2017 01:29:01,553 --> 01:29:04,523 FOR EXAMPLE WE HAVE AN F32 2018 01:29:04,523 --> 01:29:06,125 FELLOW WHERE THEIR FIRST FOCUS 2019 01:29:06,125 --> 01:29:10,662 IS SURGERY AND MEDICAL DEVICES. 2020 01:29:10,662 --> 01:29:14,500 I WOULD LIKE TO HIGHLIGHT CPTN 2021 01:29:14,500 --> 01:29:16,902 IS REPRESENTED ACROSS THE 2022 01:29:16,902 --> 01:29:17,736 CONTINENTAL U.S. AND RECOGNIZE 2023 01:29:17,736 --> 01:29:19,104 THE OPPORTUNITY TO EXPAND OUR 2024 01:29:19,104 --> 01:29:24,376 REACH AND PERHAPS CONNECT WITH 2025 01:29:24,376 --> 01:29:27,413 MORE RURAL STATES LIKE SOUTH 2026 01:29:27,413 --> 01:29:32,951 DAKOTA, INDIANA AND WYOMING. 2027 01:29:32,951 --> 01:29:34,086 SO CURRENT NETWORK IS COMPRISED 2028 01:29:34,086 --> 01:29:36,188 OF THE COMPONENTS YOU SEE HERE. 2029 01:29:36,188 --> 01:29:37,790 THEY'RE ALL GEARED TOWARDS 2030 01:29:37,790 --> 01:29:39,124 DELIVERING A COMPREHENSIVE 2031 01:29:39,124 --> 01:29:40,125 TRAINING EXPERIENCE. 2032 01:29:40,125 --> 01:29:42,494 I THINK OUR LECTURE SERIES MAY 2033 01:29:42,494 --> 01:29:44,396 BE THE MOST POPULAR COMPONENT OF 2034 01:29:44,396 --> 01:29:49,034 OUR NETWORK DESIGN TO CATER THE 2035 01:29:49,034 --> 01:29:52,271 EDUCATIONAL NEEDS OF CLINICAL 2036 01:29:52,271 --> 01:29:54,072 PHARMACOLOGY STUDENTS WHO MAY 2037 01:29:54,072 --> 01:29:57,643 LACK A FORMAL CURRICULUM AND WE 2038 01:29:57,643 --> 01:29:59,144 DO OFFER EXCLUSIVE WORKSHOPS FOR 2039 01:29:59,144 --> 01:30:03,515 OUR FELLOWS AND THESE ARE AIMED 2040 01:30:03,515 --> 01:30:05,551 AT FOSTERING PEER ENGAGEMENT AND 2041 01:30:05,551 --> 01:30:08,420 NURTURING COLLABORATION AND 2042 01:30:08,420 --> 01:30:09,688 TAPPING INTO THE COLLECTIVE 2043 01:30:09,688 --> 01:30:11,990 RESOURCES OF OUR NETWORK SITES. 2044 01:30:11,990 --> 01:30:13,826 WE EMPHASIZE THE VALUE OF TEAM 2045 01:30:13,826 --> 01:30:15,694 SCIENCE AND ENCOURAGING AND 2046 01:30:15,694 --> 01:30:18,397 SUPPORT UNIQUE AND INNOVATIVE 2047 01:30:18,397 --> 01:30:19,865 RESEARCH ENDEAVORS AND WE 2048 01:30:19,865 --> 01:30:21,433 ENCOURAGE THAT TOGETHER THE 2049 01:30:21,433 --> 01:30:23,135 COMPONENTS DO OFFER A 2050 01:30:23,135 --> 01:30:23,635 COMPREHENSIVE TRAINING 2051 01:30:23,635 --> 01:30:27,206 EXPERIENCE. 2052 01:30:27,206 --> 01:30:32,611 SO IN ADDITION TO THE FOUR 2053 01:30:32,611 --> 01:30:35,113 COMPONENTS, CPTN HAS A NETWORK 2054 01:30:35,113 --> 01:30:37,649 THAT CONVENES AN ANNUAL MEETING 2055 01:30:37,649 --> 01:30:39,284 PROVIDING TRAINEES A PLATFORM TO 2056 01:30:39,284 --> 01:30:40,919 SHOWCASE THEIR WORK AND CONNECT 2057 01:30:40,919 --> 01:30:44,256 WITH OTHER FELLOW PARTICIPANTS. 2058 01:30:44,256 --> 01:30:47,125 WE ALSO HOLD POST ORIENTATION 2059 01:30:47,125 --> 01:30:50,329 MEETINGS OFFERING INSIGHTS INTO 2060 01:30:50,329 --> 01:30:53,599 NICHD'S KEY FIGURES, WHO IS WHO 2061 01:30:53,599 --> 01:30:56,001 AND HOW TO NAVIGATE THE NIH 2062 01:30:56,001 --> 01:30:56,368 LANDSCAPE. 2063 01:30:56,368 --> 01:30:59,204 AGAIN, I'M EXCITED TO SHARE THAT 2064 01:30:59,204 --> 01:31:02,975 WE'VE INTRODUCED OUR NEW K12 2065 01:31:02,975 --> 01:31:04,309 CAREER DEVELOPMENT INITIATIVE 2066 01:31:04,309 --> 01:31:06,378 RUNNING WITH OUR POST-DOCTORAL 2067 01:31:06,378 --> 01:31:06,545 ARM. 2068 01:31:06,545 --> 01:31:11,116 WE DO TAKE GREAT PRIDE IN OUR 2069 01:31:11,116 --> 01:31:11,583 ALUMNI NETWORK. 2070 01:31:11,583 --> 01:31:16,488 THEY'RE ACTIVE IN OUR NETWORK 2071 01:31:16,488 --> 01:31:17,656 EVENTS AND PARTICIPATE IN ALL OF 2072 01:31:17,656 --> 01:31:20,192 OUR ENGAGEMENT. 2073 01:31:20,192 --> 01:31:23,996 I WILL SAY CPTN SERVES AS A 2074 01:31:23,996 --> 01:31:25,931 VITAL LINK IN CONNECTING 2075 01:31:25,931 --> 01:31:30,135 TRAINEES WITH OTHER NICHD 2076 01:31:30,135 --> 01:31:33,972 NETWORK LIKE MANY MPRINT AND PTN 2077 01:31:33,972 --> 01:31:35,541 AND CONNECT WITH OTHER AGENCIES 2078 01:31:35,541 --> 01:31:43,582 AND INDUSTRY PARTNERS AS WELL. 2079 01:31:43,582 --> 01:31:47,352 HOW DO WE MAKE MODIFICATIONS AND 2080 01:31:47,352 --> 01:31:47,686 IMPROVEMENTS? 2081 01:31:47,686 --> 01:31:49,821 THIS IS WHERE THE SURVEY COMES 2082 01:31:49,821 --> 01:31:51,089 INTO PLAY. 2083 01:31:51,089 --> 01:31:52,891 OVER THE PAST FEW YEARS WE 2084 01:31:52,891 --> 01:31:53,892 RECOGNIZED THE NECESSITY FOR 2085 01:31:53,892 --> 01:31:55,994 CHANGE DRIVEN BY THE INSIGHT AND 2086 01:31:55,994 --> 01:31:57,229 INITIATIVES OF OUR FELLOWS. 2087 01:31:57,229 --> 01:31:58,664 WE HAVE CHIEF FELLOWS AND 2088 01:31:58,664 --> 01:32:02,267 THEY'RE ENCOURAGED TO LEAD ONE 2089 01:32:02,267 --> 01:32:04,269 PROJECT AIMED AT ENHANCING THE 2090 01:32:04,269 --> 01:32:04,836 NETWORK. 2091 01:32:04,836 --> 01:32:06,638 LAST YEAR OUR CHIEF FELLOWS 2092 01:32:06,638 --> 01:32:09,608 CREATED, DISSEMINATED AND NOW 2093 01:32:09,608 --> 01:32:11,009 EVALUATING THE RESULTS OF THEIR 2094 01:32:11,009 --> 01:32:11,410 FELLOW SURVEY. 2095 01:32:11,410 --> 01:32:13,111 THE INITIAL FINDINGS OF WHICH 2096 01:32:13,111 --> 01:32:14,513 I'LL BE PRESENTING OVER THE NEXT 2097 01:32:14,513 --> 01:32:15,714 FEW SLIDES. 2098 01:32:15,714 --> 01:32:18,150 I DID WANT TO MENTION THE SURVEY 2099 01:32:18,150 --> 01:32:25,924 IS ANONYMOUS AND THE ANALYSIS IS 2100 01:32:25,924 --> 01:32:26,525 STILL UNDERGOING EARLY STAGE 2101 01:32:26,525 --> 01:32:30,596 ANALYSIS. 2102 01:32:30,596 --> 01:32:34,933 SO THE IDEA OF THE SURVEYS BEGAN 2103 01:32:34,933 --> 01:32:36,168 AROUND 2022. 2104 01:32:36,168 --> 01:32:38,737 WE DID SPEND OUT AN INITIAL 2105 01:32:38,737 --> 01:32:40,606 SURVEY HOWEVER, THIS IS LIMITED 2106 01:32:40,606 --> 01:32:42,908 TO OUR CURRENT FELLOWS AT THE 2107 01:32:42,908 --> 01:32:43,108 TIME. 2108 01:32:43,108 --> 01:32:45,944 THIS LATEST SURVEY EXPANDED ITS 2109 01:32:45,944 --> 01:32:47,646 SCOPE TO ENCOMPASS CURRENT AND 2110 01:32:47,646 --> 01:32:49,314 ALUMNI FELLOWS AND THE OBJECTIVE 2111 01:32:49,314 --> 01:32:54,686 IS TO HELP GUIDE SHORT AND 2112 01:32:54,686 --> 01:32:57,789 LONG-TERM PROGRAMMATIC 2113 01:32:57,789 --> 01:33:08,000 DEVELOPMENT. 2114 01:33:14,840 --> 01:33:16,274 THIS HAS 17 QUESTIONS AND 2115 01:33:16,274 --> 01:33:26,752 RECEIVED ABOUT 85 RESPONSES. 2116 01:33:51,376 --> 01:33:55,580 ONLY ONE RESPONDED AS LATINO. 2117 01:33:55,580 --> 01:33:57,916 4% RESPONDED AS HAVING A 2118 01:33:57,916 --> 01:33:59,685 DISABILITY ACCORDING TO THE 2119 01:33:59,685 --> 01:34:01,687 AMERICANS WITH DISABILITIES ACT. 2120 01:34:01,687 --> 01:34:08,160 IN TERMS OF EDUCATIONAL BA 2121 01:34:08,160 --> 01:34:09,728 BACKGROUND, 13% HOLD A DEGREE 2122 01:34:09,728 --> 01:34:11,997 AND 33% HOLD A Ph.D. 2123 01:34:11,997 --> 01:34:13,565 I THINK IT'S IMPORTANT TO 2124 01:34:13,565 --> 01:34:16,968 ACKNOWLEDGE SOME OF THE 2125 01:34:16,968 --> 01:34:18,303 RESPONDENTS REAPPLIED TWICE 2126 01:34:18,303 --> 01:34:21,406 PAUSE THEY MAY HOLD A DUAL 2127 01:34:21,406 --> 01:34:23,075 DEGREE AND I THINK IT'S ALSO 2128 01:34:23,075 --> 01:34:24,710 WORTH MENTIONING THE RESPONSE 2129 01:34:24,710 --> 01:34:32,851 RATES TO THESE QUESTIONS VARIED 2130 01:34:32,851 --> 01:34:33,885 THE DEMOGRAPHIC INFORMATION WAS 2131 01:34:33,885 --> 01:34:34,152 SUPPLIED 2132 01:34:34,152 --> 01:34:39,157 I 74% OF RESPONDENTS. 2133 01:34:39,157 --> 01:34:41,259 THE RESPONDENTS WERE THEN ASKED 2134 01:34:41,259 --> 01:34:42,060 ABOUT THEIR CAREER PLANS. 2135 01:34:42,060 --> 01:34:45,697 WHETHER IT WAS CURRENT OR FUTURE 2136 01:34:45,697 --> 01:34:47,132 PLANS. 2137 01:34:47,132 --> 01:34:49,835 75% INDICATED A PREFERENCE 2138 01:34:49,835 --> 01:34:51,136 TOWARDS PURSUING CAREERS IN 2139 01:34:51,136 --> 01:34:52,671 ACADEMIA IT'S WORTH NOTING THE 2140 01:34:52,671 --> 01:34:54,473 RESPONSE REFLECTS THE CAREER 2141 01:34:54,473 --> 01:34:57,142 INTENTIONS OF ALUMNI FELLOWS 2142 01:34:57,142 --> 01:35:00,011 ALREADY ESTABLISHED IN ACADEMIA. 2143 01:35:00,011 --> 01:35:02,347 WHAT I THOUGHT WAS INTERESTING 2144 01:35:02,347 --> 01:35:06,051 WAS AMONG THE 14 CURRENT FELLOWS 2145 01:35:06,051 --> 01:35:09,955 ONLY ONE EXPRESSED A DESIRE FOR 2146 01:35:09,955 --> 01:35:13,225 ACADEMIC CAREER PATH AND WERE 2147 01:35:13,225 --> 01:35:15,026 ASKED TO IDENTIFY THE FACTORS 2148 01:35:15,026 --> 01:35:15,560 INFLUENCING THEIR CAREER 2149 01:35:15,560 --> 01:35:19,498 DECISION AND YOU CAN SEE HERE 2150 01:35:19,498 --> 01:35:20,565 WORK-LIFE BALANCE, LOCATION AND 2151 01:35:20,565 --> 01:35:23,135 FAMILY CONSIDERATIONS WERE AT 2152 01:35:23,135 --> 01:35:25,337 THE TOP OF THE CONSIDERATIONS. 2153 01:35:25,337 --> 01:35:27,672 SALARY, WORK ENVIRONMENT AND 2154 01:35:27,672 --> 01:35:29,508 RESEARCH OPPORTUNITIES ALSO HAD 2155 01:35:29,508 --> 01:35:29,908 NOTABLE MENTIONS. 2156 01:35:29,908 --> 01:35:33,612 AND WE WANTED TO SEE WHAT OTHER 2157 01:35:33,612 --> 01:35:37,315 THINGS MAY INFLUENCE THEIR 2158 01:35:37,315 --> 01:35:38,450 CAREER DECISIONS. 2159 01:35:38,450 --> 01:35:44,890 AND DEBT WAS A BIG HEAVY HITTER. 2160 01:35:44,890 --> 01:35:47,125 THIS COULD INCLUDE STUDENT LOAN 2161 01:35:47,125 --> 01:35:52,964 OR PERSONAL DEBT. 2162 01:35:52,964 --> 01:35:54,666 AND THERE WAS STRONG AND MINOR 2163 01:35:54,666 --> 01:35:55,267 INFLUENCE AND NO INFLUENCE 2164 01:35:55,267 --> 01:36:00,972 CATEGORIES. 2165 01:36:00,972 --> 01:36:02,707 AND RESPONDENTS WERE ALSO 2166 01:36:02,707 --> 01:36:04,342 QUESTIONED ABOUT THE LEVEL OF 2167 01:36:04,342 --> 01:36:06,678 SUPPORT FELT IN THEIR CAREER 2168 01:36:06,678 --> 01:36:06,878 PATHS. 2169 01:36:06,878 --> 01:36:10,148 AGAIN, IT WAS AN EVEN 2170 01:36:10,148 --> 01:36:11,116 DISTRIBUTION ACROSS CATEGORIES 2171 01:36:11,116 --> 01:36:12,884 THOUGH WE DO ACKNOWLEDGE THE 2172 01:36:12,884 --> 01:36:16,288 VECT SELECTIVE SUPPORT WAS 2173 01:36:16,288 --> 01:36:18,690 NOTABLY HIGHER AND DEFINED 2174 01:36:18,690 --> 01:36:20,225 SELECTIVE SUPPORT AS BEING 2175 01:36:20,225 --> 01:36:21,526 SUPPORTIVE IN ONE AREA OR ONE 2176 01:36:21,526 --> 01:36:22,594 ASPECT OF THEIR CAREER PLANS AND 2177 01:36:22,594 --> 01:36:26,631 NOT IN OTHER AREAS. 2178 01:36:26,631 --> 01:36:29,901 RESPONDENTS WERE SURVEYED 2179 01:36:29,901 --> 01:36:31,903 WHETHER THEY FELT OPPORTUNITIES 2180 01:36:31,903 --> 01:36:34,172 EXISTED WITHIN THE CLINICAL 2181 01:36:34,172 --> 01:36:35,473 PHARMACOLOGY FIELD. 2182 01:36:35,473 --> 01:36:39,110 THE OUTLOOK ON JOB PROSPECTS 2183 01:36:39,110 --> 01:36:39,911 APPEARED MIXED. 2184 01:36:39,911 --> 01:36:42,914 THEY RANKED THE AVAILABILITY OF 2185 01:36:42,914 --> 01:36:46,852 POSITIONS IN INDUSTRY SECTOR 2186 01:36:46,852 --> 01:36:54,659 HIGHEST AND I THINK THIS IS 2187 01:36:54,659 --> 01:37:00,899 LIKELY A CONSIDERATION OF LIKE 2188 01:37:00,899 --> 01:37:03,134 WORK-LIFE BALANCE AND 2189 01:37:03,134 --> 01:37:04,035 OPPORTUNITIES. 2190 01:37:04,035 --> 01:37:07,105 SO NEXT BASED ON THE SURVEY 2191 01:37:07,105 --> 01:37:10,375 EXPLORED THE TRAINEES' 2192 01:37:10,375 --> 01:37:14,045 PERCEPTION OF TRAINING IN THEIR 2193 01:37:14,045 --> 01:37:14,279 CAREERS. 2194 01:37:14,279 --> 01:37:16,581 WE INQUIRED ABOUT WHAT THEY 2195 01:37:16,581 --> 01:37:18,683 PERCEIVED AS HIGH NEEDS AND 2196 01:37:18,683 --> 01:37:20,185 INQUIRED WHAT THEY PERCEIVE AS 2197 01:37:20,185 --> 01:37:20,518 BARRIERS. 2198 01:37:20,518 --> 01:37:22,888 I WANT TO SHARE A SIMPLE 2199 01:37:22,888 --> 01:37:24,689 REPRESENTATION OF THE TRAINING 2200 01:37:24,689 --> 01:37:26,625 NEEDS FIRST. 2201 01:37:26,625 --> 01:37:28,426 HERE'S A GRAPH OF THE RESPONSES 2202 01:37:28,426 --> 01:37:30,395 TO THE NEEDS QUESTION. 2203 01:37:30,395 --> 01:37:33,632 YOU CAN SEE I THINK THERE'S A 2204 01:37:33,632 --> 01:37:35,066 WIDE RANGE OF RESPONSES. 2205 01:37:35,066 --> 01:37:38,837 WHAT YOU SEE IN THE DARK GREEN 2206 01:37:38,837 --> 01:37:41,273 AND LIGHT GREEN BARS ARE GRANT 2207 01:37:41,273 --> 01:37:44,042 WRITING AND FUNDING AND EMERGE 2208 01:37:44,042 --> 01:37:49,281 AS THE MOST PROMINENT NEEDS AND 2209 01:37:49,281 --> 01:37:51,883 MENTORSHIP AND DIDACTIC PROGRAMS 2210 01:37:51,883 --> 01:37:53,718 WERE RANKED LOWER. 2211 01:37:53,718 --> 01:37:54,819 BACK TO THE PREVIOUS SLIDE WHEN 2212 01:37:54,819 --> 01:37:58,823 IT COMES TO TRAINING NEEDS, THE 2213 01:37:58,823 --> 01:38:00,091 TRAINEES EXPRESSED A DESIRE FOR 2214 01:38:00,091 --> 01:38:01,726 DEARLY RESOURCES AND APPLYING 2215 01:38:01,726 --> 01:38:02,394 FOR FUNDING OPPORTUNITIES AND 2216 01:38:02,394 --> 01:38:05,664 PREPARATION FOR ENTRY IN THE 2217 01:38:05,664 --> 01:38:07,933 WORKFORCE AND ALSO HIGHLIGHTED A 2218 01:38:07,933 --> 01:38:10,769 NECESSITY FOR ENHANCED 2219 01:38:10,769 --> 01:38:12,771 MENTORSHIP AND PRESENCE OF ROLE 2220 01:38:12,771 --> 01:38:13,505 MODELS. 2221 01:38:13,505 --> 01:38:16,808 INTERESTINGLY THE RESPONDENTS 2222 01:38:16,808 --> 01:38:20,879 HIGHLIGHTED THE INADEQUATE 2223 01:38:20,879 --> 01:38:30,488 MENTORSHIP AND RANGED -- RANKED 2224 01:38:30,488 --> 01:38:32,157 MENTORSHIP LOWER AND THE 2225 01:38:32,157 --> 01:38:35,126 PERCEIVED TRAINING IN TRAINEES 2226 01:38:35,126 --> 01:38:38,830 AND I THINK THE CHIEF CITATION 2227 01:38:38,830 --> 01:38:41,900 WAS THE LIMITED TIME AVAILABLE 2228 01:38:41,900 --> 01:38:44,002 AND AGAIN MENTIONED INADEQUATE 2229 01:38:44,002 --> 01:38:46,738 MENTORSHIP AND SHORTAGE OF 2230 01:38:46,738 --> 01:38:47,138 FUNDING. 2231 01:38:47,138 --> 01:38:48,139 TRAINEES EXPRESSED THEIR 2232 01:38:48,139 --> 01:38:50,075 FEELINGS OF UNCERTAINTY 2233 01:38:50,075 --> 01:38:55,547 REGARDING THEIR CAREER 2234 01:38:55,547 --> 01:39:00,618 TRAJECTORY AND I THINK THEY 2235 01:39:00,618 --> 01:39:03,121 MENTIONED IT SEEMED ON THE MINOR 2236 01:39:03,121 --> 01:39:13,198 END. 2237 01:39:35,887 --> 01:39:38,390 AND I THINK THIS ENCOURAGES US 2238 01:39:38,390 --> 01:39:40,558 AND SHOWS US THERE'S OPPORTUNITY 2239 01:39:40,558 --> 01:39:43,028 FOR IMPROVEMENT IN THE TRAINING 2240 01:39:43,028 --> 01:39:44,996 EXPERIENCE IN TERMS OF 2241 01:39:44,996 --> 01:39:47,265 INCREASING MENTORSHIP AND MEN 2242 01:39:47,265 --> 01:39:50,035 THE ROLE MODELS AVAILABLE AND 2243 01:39:50,035 --> 01:39:55,006 PROVIDING ASSISTANCE WITH 2244 01:39:55,006 --> 01:40:01,679 APPLYING FOR FUND IING AND ASSI 2245 01:40:01,679 --> 01:40:06,684 AN IN APPLYING FOR JOBS. 2246 01:40:06,684 --> 01:40:11,122 WE REGULARLY REVIEW OUR 2247 01:40:11,122 --> 01:40:15,693 STRENGTHS AND DO AN ANNUAL 2248 01:40:15,693 --> 01:40:17,195 OPPORTUNITY FOR CURRENT AND 2249 01:40:17,195 --> 01:40:19,297 FORMER ALUMNI TO SUBMIT FEEDBACK 2250 01:40:19,297 --> 01:40:21,900 AT THE END OF THE YEAR, AT AND 2251 01:40:21,900 --> 01:40:22,767 THE OF OUR WORKSHOPS AS WELL AS 2252 01:40:22,767 --> 01:40:24,969 THE END OF OUR LECTURE SERIES. 2253 01:40:24,969 --> 01:40:27,138 THERE'S SOME QUOTES I WANTED TO 2254 01:40:27,138 --> 01:40:37,482 SHARE WITH YOU ALL. 2255 01:40:40,118 --> 01:40:45,023 AND BUILDING A NICHE OF THE 2256 01:40:45,023 --> 01:40:48,993 PEDIATRIC RUHEUMATOLOGISTS IN TE 2257 01:40:48,993 --> 01:40:51,863 U.S. AND WE HAD A SECOND-YEAR 2258 01:40:51,863 --> 01:40:53,465 FELLOW REGARDING A MEETING 2259 01:40:53,465 --> 01:40:58,136 STATED THEY WOULD HAVE LIKED TO 2260 01:40:58,136 --> 01:41:00,705 HAVE HAD EARLIER SESSIONS IN 2261 01:41:00,705 --> 01:41:01,739 THEIR FELLOWSHIP BECAUSE THEY 2262 01:41:01,739 --> 01:41:05,343 FOUND THE SESSIONS TO BE 2263 01:41:05,343 --> 01:41:05,610 VALUABLE. 2264 01:41:05,610 --> 01:41:07,078 SO OVER TIME WE IMPLEMENTED 2265 01:41:07,078 --> 01:41:09,447 SIGNIFICANT ENHANCEMENTS TO THE 2266 01:41:09,447 --> 01:41:12,117 NETWORK BASED OFF THE FEEDBACK 2267 01:41:12,117 --> 01:41:13,618 AND WE OBSERVED GROWTH IN THE 2268 01:41:13,618 --> 01:41:15,120 RANGE OF OUR OFFERINGS WITHIN 2269 01:41:15,120 --> 01:41:16,521 THE NETWORK AND THE NUMBER OF 2270 01:41:16,521 --> 01:41:20,959 PARTICIPANTS INVOLVED. 2271 01:41:20,959 --> 01:41:23,328 I WANTED TO SHARE WITH YOU WHAT 2272 01:41:23,328 --> 01:41:27,866 WE PLAN TO DO WITH SOME OF THE 2273 01:41:27,866 --> 01:41:29,868 FEEDBACK WE RECEIVED. 2274 01:41:29,868 --> 01:41:32,937 IN TERMS OF TRAINING WANT TO 2275 01:41:32,937 --> 01:41:33,838 OFFER DISTINCTIVE TRAINING 2276 01:41:33,838 --> 01:41:34,305 EXPERIENCES. 2277 01:41:34,305 --> 01:41:38,076 WE WANT TO STRENGTHEN JOB 2278 01:41:38,076 --> 01:41:40,578 READINESS RESOURCES POTENTIALLY 2279 01:41:40,578 --> 01:41:42,914 EXPLORING THE TOOLBOX. 2280 01:41:42,914 --> 01:41:44,115 WE WANT TO ADDRESS PERSONAL 2281 01:41:44,115 --> 01:41:46,217 NEEDS AND RELATED CONCERNS. 2282 01:41:46,217 --> 01:41:49,354 WE ARE ENCOURAGE OUR TRAINEES TO 2283 01:41:49,354 --> 01:41:51,389 APPLY FOR THE NIH LOAN REPAYMENT 2284 01:41:51,389 --> 01:41:54,025 PROGRAM AND OFFERING GUIDANCE ON 2285 01:41:54,025 --> 01:41:57,462 THE APPLICATION PROCESS VIA 2286 01:41:57,462 --> 01:41:58,296 NIH'S WEBSITE. 2287 01:41:58,296 --> 01:42:00,198 WE DO WANT TO EXPLORE THE 2288 01:42:00,198 --> 01:42:02,500 POSSIBILITY OF CONDUCTING AN 2289 01:42:02,500 --> 01:42:04,035 INTERNAL SURVEY WITH 2290 01:42:04,035 --> 01:42:05,703 STANDARDIZED CORE QUESTIONS TO 2291 01:42:05,703 --> 01:42:08,506 HELP FACILITATE MORE 2292 01:42:08,506 --> 01:42:12,810 LONGITUDINAL ANALYSIS. 2293 01:42:12,810 --> 01:42:22,320 SO MAYBE WE'LL HAVE SOMETHING 2294 01:42:22,320 --> 01:42:23,188 MORE IN THE NEXT COUPLE YEAR. 2295 01:42:23,188 --> 01:42:28,026 I WANT TO ACKNOWLEDGE OUR RECENT 2296 01:42:28,026 --> 01:42:31,229 FELLOW MOREL AND DR. HORNIG AND 2297 01:42:31,229 --> 01:42:36,968 THE ADVISER FOR THE 2298 01:42:36,968 --> 01:42:47,512 CONTRIBUTIONS TO THEIR ANALYSIS 2299 01:42:54,385 --> 01:42:56,788 AND PLEASE BE ON THE LOOK OUT 2300 01:42:56,788 --> 01:42:58,122 FOR THAT AND I'D BE HAPPY TO 2301 01:42:58,122 --> 01:42:58,389 SHARE. 2302 01:42:58,389 --> 01:43:00,625 I HOPE THE INFORMATION WAS 2303 01:43:00,625 --> 01:43:01,893 HELPFUL AND INSIGHTFUL AND I 2304 01:43:01,893 --> 01:43:02,560 WANT TO THANK YOU FOR YOUR TIME 2305 01:43:02,560 --> 01:43:12,804 AND ATTENTION. 2306 01:43:34,492 --> 01:43:36,694 >> I WANT TO EMPHASIZE LOAN 2307 01:43:36,694 --> 01:43:39,130 REPAYMENT I CALLED OUT AND 2308 01:43:39,130 --> 01:43:39,464 EXPLORING IT. 2309 01:43:39,464 --> 01:43:40,531 IT'S CRUCIAL FOR PEOPLE TO 2310 01:43:40,531 --> 01:43:41,899 CHOOSE A CAREER IN THIS AREA. 2311 01:43:41,899 --> 01:43:43,167 THAT'S THE NUMBER ONE THING WE 2312 01:43:43,167 --> 01:43:49,374 HEAR WHEN WE TALK WITH OUR 2313 01:43:49,374 --> 01:43:52,477 SCHOLARS IS THEY CAN'T AFFORD A 2314 01:43:52,477 --> 01:43:53,344 CAREER IN RESEARCH. 2315 01:43:53,344 --> 01:43:54,779 LOAN REPAYMENT GOES A LONG WAY 2316 01:43:54,779 --> 01:43:57,181 AND WANTED TO CALL OUT ANOTHER 2317 01:43:57,181 --> 01:43:58,983 GREAT IDEA ON THE SCREEN AND 2318 01:43:58,983 --> 01:44:00,652 LESLIE TALKED ABOUT IT IN HER 2319 01:44:00,652 --> 01:44:01,786 TALK AS WELL. 2320 01:44:01,786 --> 01:44:05,423 IF YOU LOOK AT THE T AND K 2321 01:44:05,423 --> 01:44:10,495 SCHOLARS AND MAYBE EARLY STAGE 2322 01:44:10,495 --> 01:44:15,333 INVESTIGAT 2323 01:44:15,333 --> 01:44:18,670 INVESTIGATORS PEOPLE TO LIFT UP 2324 01:44:18,670 --> 01:44:21,205 A WIN-WIN SITUATION FOR BOTH 2325 01:44:21,205 --> 01:44:22,907 SCHOLARS AND NETWORKS BUT TO DO 2326 01:44:22,907 --> 01:44:29,080 THAT WE WOULD HAVE TO CONSIDER 2327 01:44:29,080 --> 01:44:39,590 SOME CORE PRACTICES TO CREATE 2328 01:44:41,092 --> 01:44:42,126 CURRICULAR AND PEER AND NEAR 2329 01:44:42,126 --> 01:44:44,128 PEER MENTORING NETWORK. 2330 01:44:44,128 --> 01:44:46,097 HOW DO WE CREATE THOSE PILOTS 2331 01:44:46,097 --> 01:44:46,931 AND CREATE THE CORE 2332 01:44:46,931 --> 01:44:48,466 INFRASTRUCTURE TO LINK THE T AND 2333 01:44:48,466 --> 01:44:53,905 K AND EARLY STAGE INVESTIGATORS 2334 01:44:53,905 --> 01:45:00,511 TO EXIST IING NICHD NETWORKS. 2335 01:45:00,511 --> 01:45:06,284 IT SEEMS THAT WOULD BE A 2336 01:45:06,284 --> 01:45:06,718 MULTIPLIER EFFECT. 2337 01:45:06,718 --> 01:45:08,219 >> 2338 01:45:08,219 --> 01:45:09,921 >> THIS COULD BE A MODEL FOR THE 2339 01:45:09,921 --> 01:45:11,122 BROADER THINGS WE WOULD LIKE TO 2340 01:45:11,122 --> 01:45:21,399 DO AND A LESSON. 2341 01:45:43,788 --> 01:45:45,923 WE'RE TRYING TO DEVELOP THE 2342 01:45:45,923 --> 01:45:48,226 INFRASTRUCTURE AND IT'S 2343 01:45:48,226 --> 01:45:49,193 SOMETHING WE'RE THINKING ABOUT 2344 01:45:49,193 --> 01:45:50,261 AND TRYING TO WORK TOWARD. 2345 01:45:50,261 --> 01:45:54,098 >> I RECOMMEND THAT IS TO 2346 01:45:54,098 --> 01:45:55,566 ARTICULATE WHAT THE FUNDING LOOK 2347 01:45:55,566 --> 01:45:56,234 LIKE TO CREATE THE 2348 01:45:56,234 --> 01:45:57,769 INFRASTRUCTURE BRIDGE BECAUSE I 2349 01:45:57,769 --> 01:45:59,103 THINK THE RETURN ON INVESTMENT 2350 01:45:59,103 --> 01:46:09,414 WOULD BE TERRIFIC. 2351 01:46:10,948 --> 01:46:12,250 >> THANK YOU FOR THE 2352 01:46:12,250 --> 01:46:13,251 PRESENTATION AND KUDOS FOR 2353 01:46:13,251 --> 01:46:16,788 GETTING ALUMNI FEEDBACK BECAUSE 2354 01:46:16,788 --> 01:46:18,890 THAT'S INCREDIBLY IMPORTANT. 2355 01:46:18,890 --> 01:46:21,459 OFTEN THE TRAININGS IN THE 2356 01:46:21,459 --> 01:46:22,727 SITUATION GIVE FEEDBACK BUT 2357 01:46:22,727 --> 01:46:25,663 DON'T KNOW WHAT THEY NEED YET. 2358 01:46:25,663 --> 01:46:27,098 THAT COUPLE YEARS OUT FROM THE 2359 01:46:27,098 --> 01:46:29,000 ALUMNI IS IMPORTANT. 2360 01:46:29,000 --> 01:46:30,568 AND ALSO I THINK THE MOST 2361 01:46:30,568 --> 01:46:32,637 IMPORTANT THING IS REGULAR 2362 01:46:32,637 --> 01:46:35,106 SURVEY AND THE ONGOING SURVEY 2363 01:46:35,106 --> 01:46:36,073 AND RE-REALIZATION. 2364 01:46:36,073 --> 01:46:39,343 I'M HAPPY TO SEE THAT. 2365 01:46:39,343 --> 01:46:40,912 THE OTHER THING I WAS THINKING 2366 01:46:40,912 --> 01:46:42,413 ABOUT WITH YOUR NETWORK IS WE'RE 2367 01:46:42,413 --> 01:46:45,416 MOVING INTO A NEW GENERATION OF 2368 01:46:45,416 --> 01:46:48,219 TRAINEES WITH THIS GEN Z GROUP. 2369 01:46:48,219 --> 01:46:50,288 IT MAY BE REALLY IMPORTANT TO 2370 01:46:50,288 --> 01:46:51,789 THINK HOW YOU CAN BE TRANSPARENT 2371 01:46:51,789 --> 01:46:54,492 ABOUT WHAT A NETWORK OR TRAINING 2372 01:46:54,492 --> 01:46:55,526 PROGRAM CAN PROVIDE AS WELL AS 2373 01:46:55,526 --> 01:46:57,195 WHAT A NETWORK OR TRAINING 2374 01:46:57,195 --> 01:47:00,698 PROGRAM CAN'T PROVIDE SO THEY 2375 01:47:00,698 --> 01:47:01,866 HAVE VERY CLEAR INFORMATION AND 2376 01:47:01,866 --> 01:47:03,501 YOUR SETTING EXPECTATIONS FROM 2377 01:47:03,501 --> 01:47:04,469 THE GET GO. 2378 01:47:04,469 --> 01:47:08,639 AND THE LAST THING I WANTED TO 2379 01:47:08,639 --> 01:47:12,310 DO IS ECHO SHERRI'S COMMENT AND 2380 01:47:12,310 --> 01:47:14,712 THINK ABOUT OF NETWORKS BEYOND 2381 01:47:14,712 --> 01:47:17,014 NICHD BECAUSE THERE'S SO MANY 2382 01:47:17,014 --> 01:47:18,149 TOPICS FUNDED BY OTHER AGENCIES 2383 01:47:18,149 --> 01:47:21,285 THERE MAY BE A WAY TO CONNECT 2384 01:47:21,285 --> 01:47:23,588 TRAINEES WITHIN THE NETWORKS 2385 01:47:23,588 --> 01:47:25,056 OUTSIDE THAT COULD IMPROVE 2386 01:47:25,056 --> 01:47:35,566 NETWORKS AND TRAINEES OPTIONS. 2387 01:47:47,612 --> 01:47:50,748 >> WHEN YOU LOOK AT THE WORD 2388 01:47:50,748 --> 01:47:52,483 CLOUD FOR THE CURRENT 2389 01:47:52,483 --> 01:47:52,783 GENERATION. 2390 01:47:52,783 --> 01:47:56,320 ONE OF THE QUESTIONS I HAD IN 2391 01:47:56,320 --> 01:47:57,355 THE NEEDS ASSESSMENT WAS A 2392 01:47:57,355 --> 01:47:59,123 LITTLE HARD TO TELL BY HOW IT 2393 01:47:59,123 --> 01:48:00,625 WAS PRESENTED WHETHER THESE ARE 2394 01:48:00,625 --> 01:48:02,093 THINGS THAT THEY WANTED AND 2395 01:48:02,093 --> 01:48:03,661 WEREN'T GETTING OR WHETHER THESE 2396 01:48:03,661 --> 01:48:05,463 ARE THINGS OF WHAT THEY'RE 2397 01:48:05,463 --> 01:48:06,497 GETTING THAT ARE REALLY 2398 01:48:06,497 --> 01:48:11,102 IMPORTANT AND I THINK IT WOULD 2399 01:48:11,102 --> 01:48:12,737 BE IMPORTANT TO SORT OF FIGURE 2400 01:48:12,737 --> 01:48:13,905 OUT AND MAYBE IT'S OBVIOUS TO 2401 01:48:13,905 --> 01:48:15,606 YOU FROM THE QUESTION BUT GRANT 2402 01:48:15,606 --> 01:48:18,476 AND FUNDING, IT SEEMS LIKE THAT 2403 01:48:18,476 --> 01:48:20,278 MAY BE A LOT OF WHAT IS 2404 01:48:20,278 --> 01:48:22,680 HAPPENING AT THE TRAINING GRANT 2405 01:48:22,680 --> 01:48:24,482 AND GETTING IT AND HAPPY ABOUT 2406 01:48:24,482 --> 01:48:26,384 IT OR FEEL THEY NEED IT AND NOT 2407 01:48:26,384 --> 01:48:28,119 HAPPY ABOUT IT. 2408 01:48:28,119 --> 01:48:30,288 I THINK THEY'RE MAKING SOME 2409 01:48:30,288 --> 01:48:32,056 PROGRAMS DOING THAT WELL AND 2410 01:48:32,056 --> 01:48:33,291 SOME NOT DOING THAT WELL. 2411 01:48:33,291 --> 01:48:36,160 ONE PROGRAM CAN LEARN FROM 2412 01:48:36,160 --> 01:48:38,996 ANOTHER SO IT WAS HARD FOR ME TO 2413 01:48:38,996 --> 01:48:40,131 ASCERTAIN WHETHER THESE WERE 2414 01:48:40,131 --> 01:48:41,832 THINGS THEY WANT AND NOT GETTING 2415 01:48:41,832 --> 01:48:44,035 OR WANT AND THEY ARE GETTING AND 2416 01:48:44,035 --> 01:48:47,104 THINK SHOULD BE PRIORITIES FOR 2417 01:48:47,104 --> 01:48:52,310 THE PROGRAM. 2418 01:48:52,310 --> 01:48:52,777 >> THANK YOU. 2419 01:48:52,777 --> 01:48:56,948 THAT'S SOMETHING WE HAD TALKED 2420 01:48:56,948 --> 01:48:59,183 ABOUT TRYING TO DISCERN WHAT THE 2421 01:48:59,183 --> 01:49:00,751 RESPONSE OF THAT QUESTION MEANT 2422 01:49:00,751 --> 01:49:04,188 AND THAT'S WHAT PROMPTED US TO 2423 01:49:04,188 --> 01:49:07,558 HAVE CORE QUESTIONS DEVELOPED BY 2424 01:49:07,558 --> 01:49:10,962 NICHD STAFF SO WE COULD CLEARLY 2425 01:49:10,962 --> 01:49:16,500 GET AN IDEA OF WHAT ARE ALUMNI 2426 01:49:16,500 --> 01:49:18,769 FELLOWS ARE LOOKING FOR. 2427 01:49:18,769 --> 01:49:19,370 A OBSERVATION. 2428 01:49:19,370 --> 01:49:22,273 I DON'T WANT TO ASSUME I KNOW 2429 01:49:22,273 --> 01:49:23,874 WHAT THEY MEAN BY THAT BUT I'LL 2430 01:49:23,874 --> 01:49:25,242 LOOK INTO THAT QUESTION MORE AND 2431 01:49:25,242 --> 01:49:29,380 INTO THE FUTURE MAKE SURE WE 2432 01:49:29,380 --> 01:49:30,715 HAVE A BETTER WAY OF DISCERNING 2433 01:49:30,715 --> 01:49:35,119 THE RESPONSES TO THAT. 2434 01:49:35,119 --> 01:49:37,989 >> SO IF I COULD JUST ADD WE HAD 2435 01:49:37,989 --> 01:49:39,256 A NICE CONVERSATION WITH THAT 2436 01:49:39,256 --> 01:49:41,025 AND LOOKED LIKE THREE-QUARTERS 2437 01:49:41,025 --> 01:49:43,928 OF TRAINEES WANT TO GO INTO 2438 01:49:43,928 --> 01:49:44,762 ACADEMIA BUT ONLY A QUARTER PLAN 2439 01:49:44,762 --> 01:49:46,764 TO GO INTO HAD ACADEMIA OR 2440 01:49:46,764 --> 01:49:47,398 SOMETHING LIKE THAT. 2441 01:49:47,398 --> 01:49:51,102 >> JOE, THERE'S A QUESTION AND 2442 01:49:51,102 --> 01:49:53,704 THEN AN ONLINE QUESTION FROM 2443 01:49:53,704 --> 01:49:54,472 GENEVIEVE. 2444 01:49:54,472 --> 01:49:58,109 >> THANK YOU BOTH FOR THESE VERY 2445 01:49:58,109 --> 01:50:00,211 INTERESTING PRESENTATIONS. 2446 01:50:00,211 --> 01:50:01,612 MY QUESTION IS RELATED JUST TO 2447 01:50:01,612 --> 01:50:03,681 THE LAST POINT YOU MENTIONED HOW 2448 01:50:03,681 --> 01:50:06,717 THERE'S A DIFFERENTIAL BETWEEN 2449 01:50:06,717 --> 01:50:11,956 THE CURRENT TRAINEES IN THESE 2450 01:50:11,956 --> 01:50:12,657 PROGRAMS AND THEIR CAREER 2451 01:50:12,657 --> 01:50:14,625 CHOICES OR WISHES AND THE ONES 2452 01:50:14,625 --> 01:50:16,594 THAT HAVE GRADUATED. 2453 01:50:16,594 --> 01:50:22,066 SO THIS IS NOT UNIQUE I THINK TO 2454 01:50:22,066 --> 01:50:24,468 NICHD PROGRAMS. 2455 01:50:24,468 --> 01:50:26,570 WE SEE IT ACROSS OTHER 2456 01:50:26,570 --> 01:50:27,471 INSTITUTIONAL TRAINING AND 2457 01:50:27,471 --> 01:50:30,274 SCHOLAR DEVELOPMENT PROGRAMS. 2458 01:50:30,274 --> 01:50:33,878 SO I'M CURIOUS HOW MUCH YOU LOOK 2459 01:50:33,878 --> 01:50:38,315 AT MORE GLOBALLY THE TRAINING 2460 01:50:38,315 --> 01:50:39,417 AND WHETHER YOU THINK IN TERMS 2461 01:50:39,417 --> 01:50:42,019 OF LOOKING AT DIFFERENT OUTCOMES 2462 01:50:42,019 --> 01:50:42,953 MORE PRACTICALLY. 2463 01:50:42,953 --> 01:50:53,397 WHAT DOES THAT LOOK LIKE? 2464 01:51:00,671 --> 01:51:02,239 >> ONE OF THE THINGS I WOULD SAY 2465 01:51:02,239 --> 01:51:03,808 IS THAT I THINK IT'S SOMETHING 2466 01:51:03,808 --> 01:51:06,610 THAT'S REALLY CHANGED IN THE 2467 01:51:06,610 --> 01:51:09,146 LAST 20 YEARS OR SO IS THERE 2468 01:51:09,146 --> 01:51:11,115 USED TO BE A HIERARCHY OF 2469 01:51:11,115 --> 01:51:12,850 OUTCOMES AND NOW IT'S A MORE 2470 01:51:12,850 --> 01:51:14,785 LEVEL PLAYING FIELD WHERE PEOPLE 2471 01:51:14,785 --> 01:51:16,887 HAVE EQUAL OPTIONS OPPOSED TO IF 2472 01:51:16,887 --> 01:51:18,756 I DON'T DO THIS I'LL DO THIS OR 2473 01:51:18,756 --> 01:51:23,594 THIS. 2474 01:51:23,594 --> 01:51:30,768 SO IN A WAY MAYBE IT'S GOOD 2475 01:51:30,768 --> 01:51:33,037 PEOPLE -- THE PIE CHART SHOWED 2476 01:51:33,037 --> 01:51:33,604 FIVE THINGS PEOPLE WERE 2477 01:51:33,604 --> 01:51:35,106 INTERESTED IN DOING. 2478 01:51:35,106 --> 01:51:36,841 THAT'S A GOOD THING. 2479 01:51:36,841 --> 01:51:39,744 THERE AREN'T ENOUGH JOBS IN 2480 01:51:39,744 --> 01:51:44,782 ACADEMIA AT LEAST LAST TIME I 2481 01:51:44,782 --> 01:51:47,618 CHECKED TO FOR ALL THE 2482 01:51:47,618 --> 01:51:48,119 TRAININGS. 2483 01:51:48,119 --> 01:51:50,554 >> A QUICK FOLLOW UP ON THAT, 2484 01:51:50,554 --> 01:51:51,756 WHAT'S INTERESTING IS IT SEEMED 2485 01:51:51,756 --> 01:51:54,759 LIKE IT'S A HUGE SHIFT FROM 75% 2486 01:51:54,759 --> 01:51:59,130 FROM ORIGINALLY PLANNED TO ONE 2487 01:51:59,130 --> 01:52:07,271 PERSON LITERALLY NOW. 2488 01:52:07,271 --> 01:52:09,273 UNDERSTANDING THAT -- 2489 01:52:09,273 --> 01:52:11,108 >> UNDERSTANDING THAT SPECIFIC 2490 01:52:11,108 --> 01:52:12,176 CHANGE SEEMS TO BE QUITE 2491 01:52:12,176 --> 01:52:15,713 IMPORTANT FOR THE FUTURE OF 2492 01:52:15,713 --> 01:52:15,980 ACADEMIA. 2493 01:52:15,980 --> 01:52:17,782 EVEN IN THE CONTEXT OF HAVING 2494 01:52:17,782 --> 01:52:18,749 MORE OPTIONS. 2495 01:52:18,749 --> 01:52:23,888 >> RIGHT. 2496 01:52:23,888 --> 01:52:28,225 >> I WILL MENTION IN SOME OF OUR 2497 01:52:28,225 --> 01:52:31,128 FELLOW WORKING WORKSHOPS OUR 2498 01:52:31,128 --> 01:52:35,099 FELLOW ONLY WORKSHOPS IT SEEMS 2499 01:52:35,099 --> 01:52:39,670 LIKE ACADEMIA IS HAVING TO 2500 01:52:39,670 --> 01:52:40,271 COMPETE WITH INDUSTRY. 2501 01:52:40,271 --> 01:52:41,772 VERY HEAVILY WHAT WE'VE SEEN 2502 01:52:41,772 --> 01:52:43,174 OVER THE LAST COUPLE YEARS. 2503 01:52:43,174 --> 01:52:45,543 OUR FOCUS IS TO EVALUATE THAT 2504 01:52:45,543 --> 01:52:47,011 QUESTION A LITTLE BIT BETTER IN 2505 01:52:47,011 --> 01:52:50,281 TERMS OF WHAT SPECIFIC THINGS 2506 01:52:50,281 --> 01:52:51,682 ARE LEADING YOU AWAY FROM 2507 01:52:51,682 --> 01:52:53,450 ACADEMIA OR DRAWING YOU TO 2508 01:52:53,450 --> 01:52:54,885 ACADEMIA. 2509 01:52:54,885 --> 01:52:58,422 DEFINITELY KEEP IN MIND WE HAVE 2510 01:52:58,422 --> 01:52:59,123 TO EVALUATE OR INVESTIGATE THIS 2511 01:52:59,123 --> 01:53:02,660 A LITTLE BIT MORE. 2512 01:53:02,660 --> 01:53:06,096 >> WE'RE GOING TO TAKE ONE LAST 2513 01:53:06,096 --> 01:53:10,901 QUESTION BEFORE GENEVIEVE NEIL 2514 01:53:10,901 --> 01:53:11,101 PERRY. 2515 01:53:11,101 --> 01:53:16,140 >> I WANT TO ELEVATE THIS AS A 2516 01:53:16,140 --> 01:53:19,944 PERSON OF COLOR WHO BENEFITTED 2517 01:53:19,944 --> 01:53:22,413 FROM IT I WOULD PROBABLY WOULD 2518 01:53:22,413 --> 01:53:23,414 HAVE GONE A GIVEN ROUTE WITHOUT 2519 01:53:23,414 --> 01:53:27,117 IT SO IT'S AN IMPORTANT PART OF 2520 01:53:27,117 --> 01:53:28,919 WHAT'S HAPPENING. 2521 01:53:28,919 --> 01:53:30,788 I WAS A BIT SURPRISED BY THE 2522 01:53:30,788 --> 01:53:35,559 RESPONSE RATE. 2523 01:53:35,559 --> 01:53:43,434 I WONDER HOW WAS THE RFI DONE 2524 01:53:43,434 --> 01:53:45,169 AND I'M CONCERNED THERE ARE 13 2525 01:53:45,169 --> 01:53:48,739 RESPONSES AND THEN WE'RE MAKING 2526 01:53:48,739 --> 01:53:52,576 DECISIONS POTENTIALLY ON BASED 2527 01:53:52,576 --> 01:53:53,711 ON 13 RESPONSES. 2528 01:53:53,711 --> 01:53:56,513 >> I MEAN I WISH I KNEW THE 2529 01:53:56,513 --> 01:54:01,619 ANSWER TO THAT. 2530 01:54:01,619 --> 01:54:02,887 IT WAS IN THE DIRECTOR'S LETTER 2531 01:54:02,887 --> 01:54:05,589 AND LINKED IN AND FACEBOOK. 2532 01:54:05,589 --> 01:54:07,091 WE HAD OUR STAFF SHARE THIS 2533 01:54:07,091 --> 01:54:08,525 INFORMATION WITH THEIR GRANTEES 2534 01:54:08,525 --> 01:54:11,428 AND APPLICANTS. 2535 01:54:11,428 --> 01:54:21,939 SO, IF YOU HAVE IDEAS, PLEASE. 2536 01:54:22,339 --> 01:54:22,473 >> 2537 01:54:22,473 --> 01:54:24,341 >> I DO HAVE IDEAS. 2538 01:54:24,341 --> 01:54:26,043 I RECOMMEND WORKING DIRECTLY 2539 01:54:26,043 --> 01:54:27,611 WITH SOME OF THE PROGRAM 2540 01:54:27,611 --> 01:54:29,113 DIRECTORS AND THE P.I.s BECAUSE 2541 01:54:29,113 --> 01:54:31,248 THAT IS HOW YOU ARE GOING TO 2542 01:54:31,248 --> 01:54:34,218 LIKELY GET RESPONSE. 2543 01:54:34,218 --> 01:54:37,021 PEOPLE ARE INUNDATED WITH 2544 01:54:37,021 --> 01:54:37,254 E-MAILS. 2545 01:54:37,254 --> 01:54:38,889 THEY BECOME DESENSITIZED AND 2546 01:54:38,889 --> 01:54:42,760 THAT'S REALLY SIMPLY A FACT AND 2547 01:54:42,760 --> 01:54:44,295 REALLY CREATING A NETWORK JUST 2548 01:54:44,295 --> 01:54:46,530 LIKE WE'RE TALKING ABOUT IN 2549 01:54:46,530 --> 01:54:48,332 TERMS OF TRAINEES A NETWORK TO 2550 01:54:48,332 --> 01:54:49,867 GET THE MESSAGE OUT AND THE 2551 01:54:49,867 --> 01:54:51,568 RESPONSE I THINK THAT WOULD BE A 2552 01:54:51,568 --> 01:54:53,437 REALLY AN EFFECTIVE WAY TO DO 2553 01:54:53,437 --> 01:54:53,604 IT. 2554 01:54:53,604 --> 01:54:57,741 AND I ALSO JUST WANTED TO ECHO 2555 01:54:57,741 --> 01:54:58,509 DAMIEN'S COMMENTS BECAUSE I'D 2556 01:54:58,509 --> 01:54:59,743 LIKE TO KNOW IF THEY'RE NOT 2557 01:54:59,743 --> 01:55:00,878 GOING INTO ACADEMICS WHAT ARE 2558 01:55:00,878 --> 01:55:03,347 THEY DOING? 2559 01:55:03,347 --> 01:55:06,750 AND THE OTHER PIECE I THINK 2560 01:55:06,750 --> 01:55:08,252 THERE MAY BE DISMISSIVE 2561 01:55:08,252 --> 01:55:11,288 INFORMATION OUT THERE ABOUT 2562 01:55:11,288 --> 01:55:14,858 WORK-LIFE BALANCE AND 2563 01:55:14,858 --> 01:55:15,659 UNDERSTAN 2564 01:55:15,659 --> 01:55:17,962 UNDERSTAN 2565 01:55:17,962 --> 01:55:18,762 UNDERSTAN 2566 01:55:18,762 --> 01:55:20,531 UNDERSTANDING A LITTLE BIT ABOUT 2567 01:55:20,531 --> 01:55:24,335 WHAT THAT MEANS BECAUSE EVEN IF 2568 01:55:24,335 --> 01:55:25,569 THEY WORK IN THE PHARMACEUTICAL 2569 01:55:25,569 --> 01:55:27,104 INDUSTRY THEY'RE GOING TO BE 2570 01:55:27,104 --> 01:55:30,040 SOME LATE NIGHTS. 2571 01:55:30,040 --> 01:55:34,111 SO JUST A REALITY CHECK. 2572 01:55:34,111 --> 01:55:37,748 >> YEAH. 2573 01:55:37,748 --> 01:55:42,553 >> WELL, HAVE YOU VERY MUCH LOWE 2574 01:55:42,553 --> 01:55:44,688 AND LESLY FOR THE PRESENTATION 2575 01:55:44,688 --> 01:55:46,223 AND THE COMMITTEES FOR THE WORK 2576 01:55:46,223 --> 01:55:48,292 YOU'RE DOING IN THIS IMPORTANT 2577 01:55:48,292 --> 01:55:48,559 AREA. 2578 01:55:48,559 --> 01:55:50,561 AND THANKS TO THE COUNCIL FOR 2579 01:55:50,561 --> 01:55:52,296 ENGAGEMENT AND GREAT QUESTIONS. 2580 01:55:52,296 --> 01:55:54,431 YOU'VE NOW EARNED A LUNCH BREAK 2581 01:55:54,431 --> 01:55:57,101 IF YOU'RE STOMACH IS IN THE 2582 01:55:57,101 --> 01:55:58,635 EASTERN TIME ZONE AND IF YOU'RE 2583 01:55:58,635 --> 01:56:00,037 IN ANOTHER TIME ZONE, COULD BE A 2584 01:56:00,037 --> 01:56:02,439 DIFFERENT MEAL BUT I BELIEVE WE 2585 01:56:02,439 --> 01:56:05,709 HAVE BOX LUNCHES READY FOR YOU. 2586 01:56:05,709 --> 01:56:07,111 SO YOU'RE ENCOURAGED TO TAKE 2587 01:56:07,111 --> 01:56:09,747 THEM AND WE HAVE AN HOUR UNTIL 2588 01:56:09,747 --> 01:56:13,517 WE COME BACK ONLINE SO IT'S A 2589 01:56:13,517 --> 01:56:14,485 RELATIVELY CIVILIZED LUNCH 2590 01:56:14,485 --> 01:56:14,685 BREAK. 2591 01:56:14,685 --> 01:56:16,887 YOU CAN CHECK YOUR E-MAIL. 2592 01:56:16,887 --> 01:56:20,340 WE'RE GOING TO RETURN HERE AT 12:45 FOR A GREAT PRESENTATION. THANK YOU. 2593 01:56:23,690 --> 01:56:26,659 >> IT'S MY GREAT PLEASURE TO 2594 01:56:26,659 --> 01:56:33,733 INTRODUCE OUR NEXT SPEAKER, 2595 01:56:33,733 --> 01:56:41,074 ANOTHER ITALIAN NAME, DR 2596 01:56:41,074 --> 01:56:47,680 DR. SIMMONI PART OF OBSSR -- 2597 01:56:47,680 --> 01:56:50,283 DR. SIMONI, SHE BRINGS MORE THAN 2598 01:56:50,283 --> 01:56:56,055 25 YEARS OF EXPERIENCE AS A 2599 01:56:56,055 --> 01:56:58,725 CLINICAL PSYCHOLOGY RESEARCHER 2600 01:56:58,725 --> 01:57:01,060 LOOKING AT POPULATIONS SOCIALLY 2601 01:57:01,060 --> 01:57:03,830 MARGINALIZED INCLUDING PERSONS 2602 01:57:03,830 --> 01:57:07,333 WITH HIV AND OTHER CHRONIC 2603 01:57:07,333 --> 01:57:12,705 ILLNESSES, LATINEX, LGBT AND 2604 01:57:12,705 --> 01:57:14,674 INDIGENOUS PEOPLES AND WAS A 2605 01:57:14,674 --> 01:57:15,842 PROFESSOR AND DIRECTOR OF 2606 01:57:15,842 --> 01:57:16,643 CLINICAL TRAINING IN THE 2607 01:57:16,643 --> 01:57:18,011 DEPARTMENT OF PSYCHOLOGY AT THE 2608 01:57:18,011 --> 01:57:18,711 UNIVERSITY OF WASHINGTON. 2609 01:57:18,711 --> 01:57:23,917 SO AS I MENTIONED BEFORE, SHE'S 2610 01:57:23,917 --> 01:57:31,291 PART OF THE SEATTLE MIGRATION. 2611 01:57:31,291 --> 01:57:38,531 SHE AUTHORED MORE MAN THAN 300 2612 01:57:38,531 --> 01:57:40,066 PUBLICATIONS AND TELL US ABOUT 2613 01:57:40,066 --> 01:57:41,000 EFFORTS TO ADVANCE AND 2614 01:57:41,000 --> 01:57:43,570 COORDINATE BEHAVIORAL AND SOCIAL 2615 01:57:43,570 --> 01:57:45,038 SCIENCES RESEARCH AT NIH WORKING 2616 01:57:45,038 --> 01:57:47,574 CLOSELY WITH NIH INSTITUTES AND 2617 01:57:47,574 --> 01:57:49,042 CENTERS AND WE'RE VERY GRATEFUL 2618 01:57:49,042 --> 01:57:52,779 FOR OBSSR'S SUPPORT OF A LOT OF 2619 01:57:52,779 --> 01:57:53,246 OUR RESEARCH. 2620 01:57:53,246 --> 01:58:03,656 SO PLEASE, TAKE IT AWAY. 2621 01:58:15,168 --> 01:58:16,936 I WANT TO TELL YOU ABOUT OUR 2622 01:58:16,936 --> 01:58:18,304 OFFICE AS PRIORITY. 2623 01:58:18,304 --> 01:58:20,907 I CAME FROM ACADEMIA SPENDING 30 2624 01:58:20,907 --> 01:58:23,743 YEARS OF MY CAREER IN SCHOOLS 2625 01:58:23,743 --> 01:58:29,682 AND DID RESEARCH IN CLINICAL 2626 01:58:29,682 --> 01:58:33,019 PSYCHOLOGY AND THE INTERSECTION 2627 01:58:33,019 --> 01:58:37,290 OF SUBSTANCE ABUSE, STIGMA, 2628 01:58:37,290 --> 01:58:38,958 TRAUMA, DISCLOSURE, KEY 2629 01:58:38,958 --> 01:58:39,926 BEHAVIORAL ISSUES IN THE FIELD 2630 01:58:39,926 --> 01:58:41,728 OF HIV AND I FIND MYSELF BETWEEN 2631 01:58:41,728 --> 01:58:43,229 THE FIELDS. 2632 01:58:43,229 --> 01:58:49,102 THE BIOMARKER AND INFECTIOUS 2633 01:58:49,102 --> 01:58:51,638 DISEASE AND HIV SPECIALIST YOU 2634 01:58:51,638 --> 01:58:53,306 AND BEHAVIORAL SCIENTIST AND I 2635 01:58:53,306 --> 01:58:56,242 WAS IN THE MIDDLE DOING 2636 01:58:56,242 --> 01:58:59,045 ADHERENCE RESEARCH DEALING WITH 2637 01:58:59,045 --> 01:59:00,813 PRESCRIPTIONS OF THE MEDS AND ME 2638 01:59:00,813 --> 01:59:03,116 TALKING ABOUT BEHAVIORAL THINGS. 2639 01:59:03,116 --> 01:59:05,585 I THINK IT'S WHAT I DO NOW. 2640 01:59:05,585 --> 01:59:09,355 I'M A BEHAVIORAL AND SOCIAL 2641 01:59:09,355 --> 01:59:11,190 SCIENCE EXPERT BUT IDEAL WITH 2642 01:59:11,190 --> 01:59:17,063 NIH WHICH IS PRIMARILY A 2643 01:59:17,063 --> 01:59:17,563 BIOMEDICAL INSTITUTION. 2644 01:59:17,563 --> 01:59:23,569 AND ALSO THE TIME I CAME WAS 2645 01:59:23,569 --> 01:59:25,104 AFTER COVID WAS BE AN IMPETUS 2646 01:59:25,104 --> 01:59:28,308 FOR ME TO COME AND DR. FRANCIS 2647 01:59:28,308 --> 01:59:30,543 COLLINS WHO SAID MAYBE WE UNDER 2648 01:59:30,543 --> 01:59:31,177 INVESTED IN RESEARCH ON HUMAN 2649 01:59:31,177 --> 01:59:41,354 BEHAVIOR. 2650 01:59:57,603 --> 02:00:00,206 ONE THING I'M LEARNING IS DON'T 2651 02:00:00,206 --> 02:00:01,708 CRITICIZE THE NIH AND I'M TRYING 2652 02:00:01,708 --> 02:00:03,509 NOT TO DO ABOUT THOUGHT FRANCIS 2653 02:00:03,509 --> 02:00:05,144 COLLINS SAID THAT HIMSELF I 2654 02:00:05,144 --> 02:00:11,284 THINK I'M JUST QUOTING HIM. 2655 02:00:11,284 --> 02:00:14,087 WE CAN ALL LEARN FROM WHAT WE 2656 02:00:14,087 --> 02:00:24,597 DID TO IMPROVE IN THE FUTURE. 2657 02:00:29,769 --> 02:00:32,038 WE HAD ORAL MEDICATIONS THAT 2658 02:00:32,038 --> 02:00:34,273 WERE GOOD AND COULD HAVE BEEN A 2659 02:00:34,273 --> 02:00:35,908 GAME CHANGE ORALLY ON TO TAKE AN 2660 02:00:35,908 --> 02:00:39,045 ORAL MEDICATION TO PREVENT 2661 02:00:39,045 --> 02:00:46,452 TAKING HIV BUT THERE WAS SUB -- 2662 02:00:46,452 --> 02:00:48,855 STUBBORNLY UPTAKE AND STIGMA IN 2663 02:00:48,855 --> 02:00:51,357 THE COMMUNITY AND YOU TAKE THESE 2664 02:00:51,357 --> 02:00:52,458 INSTEAD OF OTHER WAYS TO TAKE 2665 02:00:52,458 --> 02:00:58,731 CARE OF YOUR HEALTH. 2666 02:00:58,731 --> 02:01:02,935 THERE WERE TRIALS MICROBIAL WAYS 2667 02:01:02,935 --> 02:01:05,271 OF PREVENTING HIV AMONG WOMEN 2668 02:01:05,271 --> 02:01:06,539 DOESN'T SEEM TO WORK. 2669 02:01:06,539 --> 02:01:07,640 WHY WAS THAT? 2670 02:01:07,640 --> 02:01:10,476 IF YOU DON'T USE THE PRODUCT YOU 2671 02:01:10,476 --> 02:01:11,110 CAN'T DETERMINE WHETHER IT'S 2672 02:01:11,110 --> 02:01:12,145 GOING TO WORK. 2673 02:01:12,145 --> 02:01:14,147 YOU HAVE TO HAVE BEHAVIORAL 2674 02:01:14,147 --> 02:01:21,721 SOCIAL SCIENCES AND SCIENTISTS 2675 02:01:21,721 --> 02:01:23,656 INVOLVED IN RESEARCH IN MANY 2676 02:01:23,656 --> 02:01:25,858 FIELD AND NOT JUST IN COVID BUT 2677 02:01:25,858 --> 02:01:28,895 INFECTIOUS DISEASE BUT IN TERMS 2678 02:01:28,895 --> 02:01:30,596 OF BEHAVIORAL AND SOCIAL SCIENCE 2679 02:01:30,596 --> 02:01:33,900 AND HAVING IT EVOLVE FROM EARLY 2680 02:01:33,900 --> 02:01:35,701 ON CAN IMPROVE HEALTH OUTCOME 2681 02:01:35,701 --> 02:01:38,371 AND SMOKING CESSATION PROGRAMS 2682 02:01:38,371 --> 02:01:44,077 AND PHYSICAL AND DIETARY 2683 02:01:44,077 --> 02:01:46,913 INTERVENTIONS WHICH PERFECT 2684 02:01:46,913 --> 02:01:49,382 UNDER LIE SIX OF THE 10 MENTAL 2685 02:01:49,382 --> 02:01:50,683 HEALTH PREVENTIONS AND ADHERENCE 2686 02:01:50,683 --> 02:01:53,186 TO MEDICAL TREATMENT. 2687 02:01:53,186 --> 02:01:54,654 AND I HAVE A COLLEAGUE PHYSICIAN 2688 02:01:54,654 --> 02:01:57,090 WHO SAID REALLY, WHEN YOU DO 2689 02:01:57,090 --> 02:01:59,592 ANYTHING WITH HUMAN BEINGS 2690 02:01:59,592 --> 02:02:01,727 THERE'S A COMPONENT TO A BIO 2691 02:02:01,727 --> 02:02:04,363 MEDICAL INTERVENTION THAT'S 2692 02:02:04,363 --> 02:02:04,764 HUMANISTIC. 2693 02:02:04,764 --> 02:02:09,635 ANY BIO MEDICAL INTERVENTION IS 2694 02:02:09,635 --> 02:02:12,038 BEHAVIORAL INTERVENTION IS BIO 2695 02:02:12,038 --> 02:02:12,805 BEHAVIORAL SCIENCE AND THAT'S 2696 02:02:12,805 --> 02:02:16,609 WHAT I TRIED TO THINK ABOUT. 2697 02:02:16,609 --> 02:02:16,776 SO. 2698 02:02:16,776 --> 02:02:19,445 THE OFFICE OF BEHAVIORAL AND 2699 02:02:19,445 --> 02:02:20,880 SOCIAL SCIENCES RESEARCH 2700 02:02:20,880 --> 02:02:23,316 INITIATED BY CONGRESS IN 1993. 2701 02:02:23,316 --> 02:02:26,719 WE OPENED OUR DOORS TWO YEARS 2702 02:02:26,719 --> 02:02:29,655 LATER WITH COORDINATING THE 2703 02:02:29,655 --> 02:02:31,624 SOCIAL SCIENCES AT NIH AND 2704 02:02:31,624 --> 02:02:32,291 IDENTIFYING CHALLENGES AND 2705 02:02:32,291 --> 02:02:32,925 OPPORTUNITIES TO ADVANCE THESE 2706 02:02:32,925 --> 02:02:40,666 SCIENCES. 2707 02:02:40,666 --> 02:02:47,106 THERE'S AN OFFICE OF THE AND 2708 02:02:47,106 --> 02:02:49,709 DPCPS I AND PLANNING AND 2709 02:02:49,709 --> 02:02:56,516 STRATEGIC NIFTS THERE'S 16 2710 02:02:56,516 --> 02:02:59,719 OFFICES AND WE'RE ACROSS THE 2711 02:02:59,719 --> 02:03:02,588 OFFICE OF THE DIRECTOR AND I 2712 02:03:02,588 --> 02:03:04,157 DUAL APPOINTMENTS AND OUR ROLE 2713 02:03:04,157 --> 02:03:07,593 IS TO CUT ACROSS ALL OF THESE 2714 02:03:07,593 --> 02:03:08,327 DIFFERENT INSTITUTES. 2715 02:03:08,327 --> 02:03:10,496 WE HAVE A SMALL TEAM, SMALL 2716 02:03:10,496 --> 02:03:11,998 BUDGET BUT BECAUSE OF THAT THE 2717 02:03:11,998 --> 02:03:13,266 TEAM IS THE ENERGY. 2718 02:03:13,266 --> 02:03:14,867 OUR STAFF IS ENERGY OF THE WORK 2719 02:03:14,867 --> 02:03:19,038 WE DO AT THE SOCIAL SCIENCES 2720 02:03:19,038 --> 02:03:19,272 OFFICE. 2721 02:03:19,272 --> 02:03:23,276 THEIR CREATIVITY AND DEDICATION 2722 02:03:23,276 --> 02:03:26,445 AND ABILITY TO NETWORK AND 2723 02:03:26,445 --> 02:03:27,914 ACCOMPLISH WHAT NEEDS TO BE DONE 2724 02:03:27,914 --> 02:03:31,317 IS WHAT MAKES US DO A LOT OF 2725 02:03:31,317 --> 02:03:33,753 WITH THE LITTLE BIT WE ALLOCATE. 2726 02:03:33,753 --> 02:03:38,391 I HAVE A DEPUTY DIRECTOR JANINE 2727 02:03:38,391 --> 02:03:41,561 SIMMONS A PSYCHIATRIST AND 2728 02:03:41,561 --> 02:03:42,895 NEUROSCIENTIST SO A GREAT 2729 02:03:42,895 --> 02:03:48,467 COMPLEMENT TO THE PSYCHOLOGY AND 2730 02:03:48,467 --> 02:03:55,007 WENDY SMITH AND ROSEALIND KING 2731 02:03:55,007 --> 02:04:05,451 AND KATHRYN MORRIS AND 25 2732 02:04:07,019 --> 02:04:07,453 FULL-TIME STAFF. 2733 02:04:07,453 --> 02:04:14,227 WE'RE ABOUT $41 MILLION IN 2734 02:04:14,227 --> 02:04:15,661 BUDGET WITH A STEADY INCREASE 2735 02:04:15,661 --> 02:04:21,167 OVER TIME AND MOST OUR MONEY 2736 02:04:21,167 --> 02:04:28,774 GOES TO RESEARCH WE COFUND WITH 2737 02:04:28,774 --> 02:04:31,644 OTHER I.C.s AND COME UP WITH 2738 02:04:31,644 --> 02:04:36,249 INITIATIVES AND WORK TO TO THE 2739 02:04:36,249 --> 02:04:40,219 WORK AND AND OUR FUNDING HAS 2740 02:04:40,219 --> 02:04:42,655 INCREASED OVER TIME WITH AN IN 2741 02:04:42,655 --> 02:04:43,923 COVID WHEN THE NEED WAS NEEDED 2742 02:04:43,923 --> 02:04:45,258 FOR THE BEHAVIORAL SCIENCES 2743 02:04:45,258 --> 02:04:45,524 RESEARCH. 2744 02:04:45,524 --> 02:04:52,231 IT'S BEEN CONSISTENTLY GROWING. 2745 02:04:52,231 --> 02:04:56,469 WHERE DO WE COFUND AND ALMOST 2746 02:04:56,469 --> 02:04:57,570 EVERY INSTITUTE IS INVOLVED IN 2747 02:04:57,570 --> 02:05:00,773 OUR CO-FUNDING AT NICHD AND 2748 02:05:00,773 --> 02:05:02,141 WE'RE PROUD TO HAVE CONTRIBUTED 2749 02:05:02,141 --> 02:05:04,076 OVER $3 MILLION TO THE WORK OF 2750 02:05:04,076 --> 02:05:07,179 THE INSTITUTE DURING THE LAST 2751 02:05:07,179 --> 02:05:08,814 YEAR. 2752 02:05:08,814 --> 02:05:12,218 YOU CAN SEE NIAID WORKED IN NIH 2753 02:05:12,218 --> 02:05:14,954 AND WE HAVE NEW LEADERSHIP AND 2754 02:05:14,954 --> 02:05:16,322 WE'RE LOOKING FORWARD TO WORKING 2755 02:05:16,322 --> 02:05:19,525 WITH A TEAM WITH UW ORIGINALLY 2756 02:05:19,525 --> 02:05:24,196 LOOKING FOUR FORWARD WITH HER 2757 02:05:24,196 --> 02:05:25,798 AND WANT TO MAKE SURE THE 2758 02:05:25,798 --> 02:05:26,866 INSTITUTES ARE SOMEONE WE 2759 02:05:26,866 --> 02:05:27,533 PARTNER AND WORK WITH. 2760 02:05:27,533 --> 02:05:30,703 AS I SAY TO OUR STAFF WE WANT TO 2761 02:05:30,703 --> 02:05:31,737 ENCOURAGE SOCIAL SCIENCES 2762 02:05:31,737 --> 02:05:32,905 RESEARCH BECAUSE WE WERE TRAINED 2763 02:05:32,905 --> 02:05:35,241 IN IT JUST BECAUSE WE LIKE IT, 2764 02:05:35,241 --> 02:05:36,342 WE THINK IT'S IMPORTANT FOR THE 2765 02:05:36,342 --> 02:05:37,977 OUTCOMES OF EACH OF THE 2766 02:05:37,977 --> 02:05:39,545 INSTITUTES AND THAT'S WHY WE 2767 02:05:39,545 --> 02:05:41,714 WANT TO WORK TOGETHER AND 2768 02:05:41,714 --> 02:05:46,752 PARTNER AND CO-FUND. 2769 02:05:46,752 --> 02:05:48,654 A FEW SPECIFIC GRANTS INCLUDE 2770 02:05:48,654 --> 02:05:51,590 THE SOCIAL MEDIATORS OF CHILD 2771 02:05:51,590 --> 02:05:53,626 WELL BEING AMONG ETHNIC GROUPS 2772 02:05:53,626 --> 02:05:55,494 AND FAMILIES AND WE'LL HEAR MORE 2773 02:05:55,494 --> 02:05:58,964 COMING YOU AND SOME R01s AND THE 2774 02:05:58,964 --> 02:06:02,835 IMPACT OF SCHOOL-BASED CENTERS 2775 02:06:02,835 --> 02:06:06,939 AND MY ADVISER HAD PROGRAMS SO 2776 02:06:06,939 --> 02:06:08,841 IT'S VERY IMPORTANT PART I THINK 2777 02:06:08,841 --> 02:06:11,744 OF MENTAL HEALTH CARE PROVISION 2778 02:06:11,744 --> 02:06:13,379 IN THE UNITED STATES. 2779 02:06:13,379 --> 02:06:17,149 AND THAT KINSHIP AND CHILD 2780 02:06:17,149 --> 02:06:20,986 HEALTH OUTCOMES IN URBAN AREAS 2781 02:06:20,986 --> 02:06:23,756 AND WE'RE PROUD TO BE ABLE TO 2782 02:06:23,756 --> 02:06:28,527 CO-SUPPORT. 2783 02:06:28,527 --> 02:06:31,163 A COUPLE YEARS AGO THE COUNCIL 2784 02:06:31,163 --> 02:06:33,265 OF COUNCIL FOR ALL NIH PUT 2785 02:06:33,265 --> 02:06:34,900 TOGETHER A REPORT AND LOOKED TO 2786 02:06:34,900 --> 02:06:36,635 WORKING GROUPS ON THE ROLE OF 2787 02:06:36,635 --> 02:06:37,837 BEHAVIORAL AND SOCIAL SCIENCES 2788 02:06:37,837 --> 02:06:39,805 AT THE NIH WHAT COULD BE DONE TO 2789 02:06:39,805 --> 02:06:41,073 IMPROVE IT AND MAKE IT BETTER 2790 02:06:41,073 --> 02:06:43,309 AND INTEGRATE IT. 2791 02:06:43,309 --> 02:06:45,878 SOME RECOMMENDATIONS FROM THE 2792 02:06:45,878 --> 02:06:49,181 COUNCIL INCLUDE STRATEGIC 2793 02:06:49,181 --> 02:06:49,482 INTEGRATION. 2794 02:06:49,482 --> 02:06:50,082 WE'RE THINKING ABOUT THE 2795 02:06:50,082 --> 02:06:52,184 STRATEGIC PLAN AND IT'S WELL ON 2796 02:06:52,184 --> 02:06:56,188 ITS WAY AND TIME TO TALK ABOUT 2797 02:06:56,188 --> 02:06:58,424 OUR OFFICE TO CONSISTENTLY 2798 02:06:58,424 --> 02:07:01,494 INCLUDE THE SSR AND THE 2799 02:07:01,494 --> 02:07:03,796 STRATEGIC PLANS LINKING US AND 2800 02:07:03,796 --> 02:07:05,998 ING THE APPLICATION AND RESEARCH 2801 02:07:05,998 --> 02:07:07,733 AND TRAINING SPECIFICALLY AND 2802 02:07:07,733 --> 02:07:09,201 INITIATIVES AND FOSTERING TEAM 2803 02:07:09,201 --> 02:07:11,437 SCIENCE AND DOING 2804 02:07:11,437 --> 02:07:12,271 INTERDISCIPLINARY INTEGRATION. 2805 02:07:12,271 --> 02:07:16,275 AND IN TERMS OF EXPERTISE AND 2806 02:07:16,275 --> 02:07:16,942 RECOMMENDATION OF REPRESENTATION 2807 02:07:16,942 --> 02:07:18,177 ARE GAPS IN THE NUMBER OF STAFF 2808 02:07:18,177 --> 02:07:21,480 AND WAYS TO INCREASE DIVERSITY 2809 02:07:21,480 --> 02:07:25,117 OF THE BSSR EXPERIENCE AND 2810 02:07:25,117 --> 02:07:26,318 ENSURING ADVISORY COUNCILS. 2811 02:07:26,318 --> 02:07:28,220 THIS IS THE RECOMMENDATION FROM 2812 02:07:28,220 --> 02:07:33,592 THE COUNCIL OF COUNCILS THAT HAD 2813 02:07:33,592 --> 02:07:34,927 AT LEAST TWO COUNCIL MEMBERS 2814 02:07:34,927 --> 02:07:36,061 WITH BEHAVIORAL HEALTH EXPERTISE 2815 02:07:36,061 --> 02:07:40,266 AND ENSURE THE REVIEW PANELS 2816 02:07:40,266 --> 02:07:42,401 REFLECT THE KNOWLEDGE AND 2817 02:07:42,401 --> 02:07:44,103 EXPERTISE AND HAVE A REPORT CARD 2818 02:07:44,103 --> 02:07:45,671 ON EVERY INSTITUTE AND WE'RE 2819 02:07:45,671 --> 02:07:47,740 FINDING WAYS TO MEET THE 2820 02:07:47,740 --> 02:07:48,841 EXPECTATIONS FROM THE COUNCIL 2821 02:07:48,841 --> 02:07:49,708 AND CAPACITY BUILDING. 2822 02:07:49,708 --> 02:07:51,977 WHAT ABOUT THE CENTERS, THE 2823 02:07:51,977 --> 02:07:53,546 GRANTS, THE TRIAL NETWORKS. 2824 02:07:53,546 --> 02:07:58,217 DO THEY HAVE CAPACITY IN BSSR. 2825 02:07:58,217 --> 02:07:59,652 ENGAGING EXPERTISE AND 2826 02:07:59,652 --> 02:08:01,153 IMPLEMENTING RESEARCH POLICIES 2827 02:08:01,153 --> 02:08:03,622 AND PRACTICES IN TERMS OF DATA 2828 02:08:03,622 --> 02:08:06,692 AND DIVERSITY AND ANALYTIC 2829 02:08:06,692 --> 02:08:08,694 APPROACHES TO CHARACTERIZE AND 2830 02:08:08,694 --> 02:08:11,764 TRACK TRENDS USING BSSR FINDINGS 2831 02:08:11,764 --> 02:08:13,732 TO CREATE EVIDENCE-BASED 2832 02:08:13,732 --> 02:08:15,401 APPROACHES TO ENHANCING THE 2833 02:08:15,401 --> 02:08:16,268 WORKFORCE AND SCIENTIFIC 2834 02:08:16,268 --> 02:08:16,535 PRACTICE. 2835 02:08:16,535 --> 02:08:18,671 HOW TO USE BEHAVIORAL AND SOCIAL 2836 02:08:18,671 --> 02:08:21,607 SCIENCES TO IMPROVE AND COME UP 2837 02:08:21,607 --> 02:08:23,042 WITH SCIENCE MORE EFFECTIVE, 2838 02:08:23,042 --> 02:08:24,743 EFFICIENT, EQUITABLE AND ETHICAL 2839 02:08:24,743 --> 02:08:30,082 IN TERMS OF ITS CONDUCT. 2840 02:08:30,082 --> 02:08:32,318 NEXT LET'S TALK ABOUT MAJOR 2841 02:08:32,318 --> 02:08:32,751 PRIORITIES. 2842 02:08:32,751 --> 02:08:35,654 WE HAVE ENOUGH TO STIMULATE AND 2843 02:08:35,654 --> 02:08:37,590 SEED DIFFERENT INITIATIVES SO 2844 02:08:37,590 --> 02:08:38,858 THREE TIMES A YEAR COINCIDING 2845 02:08:38,858 --> 02:08:41,227 WITH THE COUNCILS WE ASKED 2846 02:08:41,227 --> 02:08:41,894 DIFFERENT INSTITUTES WHAT DO YOU 2847 02:08:41,894 --> 02:08:45,798 NEED HELP WITH AND WHAT ARE GOOD 2848 02:08:45,798 --> 02:08:46,832 BEHAVIORAL SOCIAL SCIENCE YOU 2849 02:08:46,832 --> 02:08:48,200 DON'T HAVE MEETING YOUR PAY LINE 2850 02:08:48,200 --> 02:08:49,802 OR COULD USE HELP TO SUPPORT. 2851 02:08:49,802 --> 02:08:52,571 WE TAKE A LOOK AT THEM AND GIVE 2852 02:08:52,571 --> 02:08:54,006 A THOROUGH REVIEW. 2853 02:08:54,006 --> 02:08:56,475 IT'S ALREADY PEER REVIEWED AND 2854 02:08:56,475 --> 02:08:58,010 WE LOOK AT THOSE THAT FIT OUR 2855 02:08:58,010 --> 02:09:01,714 MISSION AND THINGS WE HOPE TO 2856 02:09:01,714 --> 02:09:02,248 LOOK AT. 2857 02:09:02,248 --> 02:09:04,517 WE HAVE RESEARCH THAT LOOKS AT 2858 02:09:04,517 --> 02:09:05,718 BEHAVIOR CHANGE AND HOW DO WE 2859 02:09:05,718 --> 02:09:07,586 CHANGE IT AND HOW DO WE MAINTAIN 2860 02:09:07,586 --> 02:09:09,121 THAT BEHAVIOR AND WHAT ARE THE 2861 02:09:09,121 --> 02:09:10,489 MECHANISMS THAT WE IMPACT. 2862 02:09:10,489 --> 02:09:13,993 IF YOU CAN GET SOMEONE TO ENGAGE 2863 02:09:13,993 --> 02:09:16,362 IN HEALTH PROMOTED BEHAVIORS 2864 02:09:16,362 --> 02:09:17,997 WHAT ARE THE MECHANISMS TO LEARN 2865 02:09:17,997 --> 02:09:21,233 WITH NEW INTERVENTIONS FOCUSSED 2866 02:09:21,233 --> 02:09:23,168 IN THAT AREA AND WE'RE 2867 02:09:23,168 --> 02:09:25,137 INTERESTED IN THE BASIC 2868 02:09:25,137 --> 02:09:26,405 PHYSIOLOGICAL MECHANISMS 2869 02:09:26,405 --> 02:09:28,407 UNDERLYING HEALTH PROMOTIONS. 2870 02:09:28,407 --> 02:09:31,143 AND SECOND, SOCIAL CONNECTION 2871 02:09:31,143 --> 02:09:31,977 AND HEALTH. 2872 02:09:31,977 --> 02:09:34,713 WE'VE ALL SEEN THE SURGEON 2873 02:09:34,713 --> 02:09:36,215 GENERAL'S REPORT ON THE PANDEMIC 2874 02:09:36,215 --> 02:09:37,550 OF LONELINESS AND WE'RE 2875 02:09:37,550 --> 02:09:40,219 INTERESTED IN THIS AND HOW IT 2876 02:09:40,219 --> 02:09:43,889 INTERACTS WITH SOCIAL MEDIA AND 2877 02:09:43,889 --> 02:09:49,728 LOOKING AT SOCIAL RELATIONS AND 2878 02:09:49,728 --> 02:09:58,571 DIE -- DIADS AND MECHANISMS. 2879 02:09:58,571 --> 02:10:00,306 TWO IMPORTANT AREAS FOR US. 2880 02:10:00,306 --> 02:10:02,841 AND ONE HAS TO DO WITH 2881 02:10:02,841 --> 02:10:04,476 MULTILEVEL RESEARCH. 2882 02:10:04,476 --> 02:10:06,078 LOOKING AT RESEARCH THAT 2883 02:10:06,078 --> 02:10:07,513 EXAMINES THE INTERSECTION OF 2884 02:10:07,513 --> 02:10:08,881 SOCIAL AND BEHAVIORAL INFLUENCES 2885 02:10:08,881 --> 02:10:11,584 ON HEALTH AT MULTIPLE LEVEL. 2886 02:10:11,584 --> 02:10:14,153 I WAS TRAINED AS A PSYCHOLOGIST 2887 02:10:14,153 --> 02:10:15,521 ONE-ON-ONE LOOKING AT THE 2888 02:10:15,521 --> 02:10:16,622 INDIVIDUAL. 2889 02:10:16,622 --> 02:10:17,489 DOESN'T REALLY CONSIDER THE 2890 02:10:17,489 --> 02:10:19,325 CONTEXT AS MUCH BUT WE CAN'T DO 2891 02:10:19,325 --> 02:10:20,726 SCIENCE LIKE THAT ANYMORE. 2892 02:10:20,726 --> 02:10:23,128 AND THERE WAS AN ARTICLE ON 2893 02:10:23,128 --> 02:10:24,964 SOCIAL SCIENCE IN MEDICINE 2894 02:10:24,964 --> 02:10:27,366 SAYING THE BIOLOGICAL 2895 02:10:27,366 --> 02:10:29,768 ESSENTIALISM SAYING IT'S ALL 2896 02:10:29,768 --> 02:10:31,604 BIOLOGICAL WILL IMPEDE OUR 2897 02:10:31,604 --> 02:10:31,837 SCIENCE. 2898 02:10:31,837 --> 02:10:35,240 WE NEED AN ECHO SOCIAL APPROACH 2899 02:10:35,240 --> 02:10:37,710 THAT LOOKS AT NOT ONLY THE 2900 02:10:37,710 --> 02:10:38,978 ORGANS WITHIN THE INDIVIDUAL NOT 2901 02:10:38,978 --> 02:10:40,512 JUST BELOW THE BELT THERE'S A 2902 02:10:40,512 --> 02:10:42,548 WHOLE OTHER OUTFIT THERE WITH 2903 02:10:42,548 --> 02:10:43,782 THE INDIVIDUAL AND THAT 2904 02:10:43,782 --> 02:10:46,352 INDIVIDUAL LIVES IN THE CONTEXT 2905 02:10:46,352 --> 02:10:50,055 AND THAT IS OFTEN FRANKLY 2906 02:10:50,055 --> 02:10:50,923 ENGENDERED AROUND RACIST 2907 02:10:50,923 --> 02:10:51,223 ENVIRONMENT. 2908 02:10:51,223 --> 02:10:53,726 WE NEED TO LOOK AT THOSE 2909 02:10:53,726 --> 02:10:53,959 FACTORS. 2910 02:10:53,959 --> 02:10:55,160 AND WHY SOCIAL DETERMINATES OF 2911 02:10:55,160 --> 02:10:56,228 HEALTH ARE SO IMPORTANT TO WHAT 2912 02:10:56,228 --> 02:10:59,298 WE WANT TO LOOK AT. 2913 02:10:59,298 --> 02:11:01,533 WE NEED TO DO THE CAREFUL 2914 02:11:01,533 --> 02:11:02,601 RESEARCH THAT ALWAYS HAS TO BE 2915 02:11:02,601 --> 02:11:04,403 LOOKED AT WITHIN THE CONTEXT OF 2916 02:11:04,403 --> 02:11:06,005 THE PERSON AND OF THAT 2917 02:11:06,005 --> 02:11:06,505 PARTICULAR ENVIRONMENT. 2918 02:11:06,505 --> 02:11:13,846 SO WE DON'T WANT TO DO THIS. 2919 02:11:13,846 --> 02:11:16,715 IT'S EASIER THAN LOOKING AT ONE 2920 02:11:16,715 --> 02:11:17,016 LEVEL. 2921 02:11:17,016 --> 02:11:19,385 YOU HAVE TO HAVE TEAM SCIENCE 2922 02:11:19,385 --> 02:11:22,688 AND INTERDISCIPLINARY WORK AND 2923 02:11:22,688 --> 02:11:24,490 LOOK AND HAVE WORK THAT IS AT 2924 02:11:24,490 --> 02:11:26,025 DIFFERENT LEVELS AND DIFFICULT 2925 02:11:26,025 --> 02:11:27,793 TO DO BUT IF YOU WANT TO HAVE 2926 02:11:27,793 --> 02:11:29,428 IMPACT OF THE WORK YOU HAVE TO 2927 02:11:29,428 --> 02:11:31,597 DO IT ESPECIALLY WHEN WE THINK 2928 02:11:31,597 --> 02:11:33,298 ABOUT GOING ON TO APPLICATIONS 2929 02:11:33,298 --> 02:11:34,400 OF THE RESEARCH WE FIND. 2930 02:11:34,400 --> 02:11:40,239 IT HAS TO BE EMBEDDED IN THAT 2931 02:11:40,239 --> 02:11:45,477 CONTEXT CAREFULLY STUDIED AND 2932 02:11:45,477 --> 02:11:49,481 INTEGRATE THE BSSR IS IN THE 2933 02:11:49,481 --> 02:11:50,716 RESEARCH AND WHEN THERE'S 2934 02:11:50,716 --> 02:11:53,085 TRAINING POSITION OR DO WORK AS 2935 02:11:53,085 --> 02:11:55,521 ON TOLL GIFT OR PEDIATRICIANS 2936 02:11:55,521 --> 02:11:57,189 AND YOU ADD SOMETHING. 2937 02:11:57,189 --> 02:11:58,824 MAYBE IT WAS WITH A NEW 2938 02:11:58,824 --> 02:12:00,092 INTERVENTION AND TECHNIQUE OF A 2939 02:12:00,092 --> 02:12:00,826 MEDICATION YOU WERE DOING AND 2940 02:12:00,826 --> 02:12:02,828 NOW YOU WANT TO TRAIN IN HOW TO 2941 02:12:02,828 --> 02:12:03,896 TALK TO THE PATIENT OR FAMILY 2942 02:12:03,896 --> 02:12:04,396 ABOUT THIS. 2943 02:12:04,396 --> 02:12:08,167 YOU DO GENETICS WORK AND HOW DO 2944 02:12:08,167 --> 02:12:10,135 YOU TELL THE FAMILY WHAT YOU 2945 02:12:10,135 --> 02:12:12,071 FOUND IF IT MAY HAVE DEVASTATING 2946 02:12:12,071 --> 02:12:15,774 IMPLICATIONS AND HAVE TO HAVE A 2947 02:12:15,774 --> 02:12:16,875 BEHAVIORAL COMPONENT TO THAT BIO 2948 02:12:16,875 --> 02:12:17,710 MEDICAL RESEARCH. 2949 02:12:17,710 --> 02:12:19,078 I LOVE THESE KINDS OF STUDIES 2950 02:12:19,078 --> 02:12:20,946 AND WE HAVE SEEN FOLKS DO THAT 2951 02:12:20,946 --> 02:12:23,449 WHETHER IT'S IN A OR ADDITION TO 2952 02:12:23,449 --> 02:12:25,250 WHAT'S BEING ALREADY PROPOSED IN 2953 02:12:25,250 --> 02:12:25,718 THE GRANT. 2954 02:12:25,718 --> 02:12:29,588 WE LOVE TO FUND MORE INTEGRATION 2955 02:12:29,588 --> 02:12:31,056 INTO BIOMEDICAL WORK. 2956 02:12:31,056 --> 02:12:34,927 AND FINALLY HEALTH COMMUNICATION 2957 02:12:34,927 --> 02:12:35,160 SCIENCE. 2958 02:12:35,160 --> 02:12:36,228 ANYONE MANY IN THE COVID 2959 02:12:36,228 --> 02:12:37,196 EPIDEMIC SAW THE IMPORTANT ISSUE 2960 02:12:37,196 --> 02:12:38,997 AND WHO WAS PROVIDING THE 2961 02:12:38,997 --> 02:12:40,199 COMMUNICATION AND HOW DO WE 2962 02:12:40,199 --> 02:12:42,367 UNDERSTAND IT, HOW THE 2963 02:12:42,367 --> 02:12:43,535 INDIVIDUALS MAKE DECISIONS ABOUT 2964 02:12:43,535 --> 02:12:48,307 RISK BEHAVIORS AND WHAT TO DO 2965 02:12:48,307 --> 02:12:50,442 WITH IT AND HAS AN IMPACT ON 2966 02:12:50,442 --> 02:12:53,178 DISPARITIES AND ALSO HAS TO BE 2967 02:12:53,178 --> 02:12:56,115 CONTEXTUA 2968 02:12:56,115 --> 02:12:56,682 CONTEXTUALIZED BETWEEN THE 2969 02:12:56,682 --> 02:12:57,082 ENVIRONMENT. 2970 02:12:57,082 --> 02:12:59,451 NOT JUST LOOKING AT THE ECHO 2971 02:12:59,451 --> 02:13:00,652 SYSTEM BUT ON PARTICULAR AREAS 2972 02:13:00,652 --> 02:13:01,019 OF TRUST. 2973 02:13:01,019 --> 02:13:02,154 EVERYTHING FROM THE DOCTOR 2974 02:13:02,154 --> 02:13:05,390 PATIENT RELATIONSHIP TO WHAT IS 2975 02:13:05,390 --> 02:13:06,992 A.I. GOING TO DO IN THE 2976 02:13:06,992 --> 02:13:08,727 COMMUNITY AND WHO ARE WE GOING 2977 02:13:08,727 --> 02:13:11,663 TO TRUST IN A.I. AND HOW DO YOU 2978 02:13:11,663 --> 02:13:12,698 MAKE DECISIONS ABOUT YOUR HEALTH 2979 02:13:12,698 --> 02:13:14,933 AND WHO COMMUNICATES THAT TO 2980 02:13:14,933 --> 02:13:15,400 YOU. 2981 02:13:15,400 --> 02:13:17,536 WE HAVE A STRATEGIC PLAN COMING 2982 02:13:17,536 --> 02:13:18,570 UP 2025. 2983 02:13:18,570 --> 02:13:20,739 WE HAD A PROCESS THAT BEGAN WELL 2984 02:13:20,739 --> 02:13:23,909 BEFORE I GOT HERE A COUPLE YEARS 2985 02:13:23,909 --> 02:13:25,410 BEFORE WE HAD ASSESSED OUR 2986 02:13:25,410 --> 02:13:26,845 PROGRESS AND LOOKED AT FUTURE 2987 02:13:26,845 --> 02:13:28,280 PLANS AND GATHERED INPUT FROM 2988 02:13:28,280 --> 02:13:29,348 THE RESEARCH COMMUNITY AND HAD A 2989 02:13:29,348 --> 02:13:33,152 COUPLE RFIs AND SPOKE WITH OUR 2990 02:13:33,152 --> 02:13:34,219 COORDINATING COMMITTEE AND 2991 02:13:34,219 --> 02:13:35,320 COLLECTED FEEDBACK AND 2992 02:13:35,320 --> 02:13:35,854 IDENTIFIED PRIORITIES AND 2993 02:13:35,854 --> 02:13:45,964 OBJECTIVES. 2994 02:13:45,964 --> 02:13:48,100 OUR VISION IS THE SYNERGISTIC 2995 02:13:48,100 --> 02:13:49,401 INTEGRATION OF SOCIAL SCIENCES 2996 02:13:49,401 --> 02:13:52,805 WITH BIOMEDICAL RESEARCH. 2997 02:13:52,805 --> 02:13:55,440 WE WANT RESEARCH WITH A 2998 02:13:55,440 --> 02:13:56,742 BEHAVIORAL COMPONENT AND WE 2999 02:13:56,742 --> 02:13:58,544 BELIEVE WILL ACCELERATE 3000 02:13:58,544 --> 02:13:59,745 SCIENTIFIC DISCOVERY, MORE 3001 02:13:59,745 --> 02:14:00,779 EFFECTIVE TREATMENT AND HEALTH 3002 02:14:00,779 --> 02:14:03,982 PROMOTION INTERVENTIONS AND 3003 02:14:03,982 --> 02:14:04,583 EQUITABLE IMPLEMENTATION 3004 02:14:04,583 --> 02:14:06,685 STRATEGIES THAT WILL IMPROVE 3005 02:14:06,685 --> 02:14:08,620 HEALTH FOR ALL AND HOW DO WE DO 3006 02:14:08,620 --> 02:14:08,987 THIS? 3007 02:14:08,987 --> 02:14:11,790 OUR MISSION IS TO ENHANCE THE 3008 02:14:11,790 --> 02:14:19,998 IMPACT B SSR BY IDENTIFYING 3009 02:14:19,998 --> 02:14:24,703 PROJECT WE THINK ARE IMPORTANT 3010 02:14:24,703 --> 02:14:27,372 MEETING ACROSS I.C.s AND DEVELOP 3011 02:14:27,372 --> 02:14:28,774 INITIATIVES AND CAN'T DO THIS 3012 02:14:28,774 --> 02:14:39,284 ALONE AND WORK IN PARTNERSHIP 3013 02:14:40,552 --> 02:14:41,520 HAVE WORKING GROUP 3014 02:14:41,520 --> 02:14:43,055 RECOMMENDATIONS AND COMMUNICATE 3015 02:14:43,055 --> 02:14:45,257 SIGNIFICANT FINDINGS AND I'M 3016 02:14:45,257 --> 02:14:47,492 MORE INTERESTED IN HAVING A 3017 02:14:47,492 --> 02:14:48,760 BROADER IMPACT IN COMMUNICATION. 3018 02:14:48,760 --> 02:14:50,996 I'LL BE GOING TO MORE SCIENTIFIC 3019 02:14:50,996 --> 02:14:52,664 MEETINGS AND HAVING A BROADER 3020 02:14:52,664 --> 02:14:54,399 COMMUNICATION STAFF THAT WE CAN 3021 02:14:54,399 --> 02:14:55,901 TALK MORE ABOUT HOW BEHAVIORAL 3022 02:14:55,901 --> 02:14:59,771 AND SOCIAL SCIENCES IS HELPING 3023 02:14:59,771 --> 02:15:00,939 THE NATION. 3024 02:15:00,939 --> 02:15:03,876 AND OUR PRIORITIES IN TERMS OF 3025 02:15:03,876 --> 02:15:04,576 RESEARCH CAPACITY AND OPERATION, 3026 02:15:04,576 --> 02:15:07,846 SO IN TERMS OF OUR RESEARCH 3027 02:15:07,846 --> 02:15:09,948 PRIORITIES THE FIRST IS 3028 02:15:09,948 --> 02:15:10,749 SYNERGISTIC. 3029 02:15:10,749 --> 02:15:15,988 WHAT I MEAN IS IT'S WITH THE BIO 3030 02:15:15,988 --> 02:15:17,723 MEDICAL AND BEHAVIOR AND BASIC 3031 02:15:17,723 --> 02:15:19,091 AND APPLIES. 3032 02:15:19,091 --> 02:15:20,659 EVEN IN BEHAVIORAL SOCIAL 3033 02:15:20,659 --> 02:15:22,194 SCIENCE YOU HAVE BASIC RESEARCH 3034 02:15:22,194 --> 02:15:24,897 LOOKING AT FUNDAMENTAL 3035 02:15:24,897 --> 02:15:29,735 MECHANISMS OF AGGRESSION OR 3036 02:15:29,735 --> 02:15:33,138 EMPATHY AND WHAT IT'S MEAN FOR 3037 02:15:33,138 --> 02:15:36,275 HEALTH INTEGRATION AND FOCUS AND 3038 02:15:36,275 --> 02:15:36,508 IMPACT. 3039 02:15:36,508 --> 02:15:38,143 WE'VE SEEN BEHAVIORAL AND SOCIAL 3040 02:15:38,143 --> 02:15:42,214 SCIENCE IN HIV BUT HOW DO WE 3041 02:15:42,214 --> 02:15:43,115 IMPLEMENT THEM. 3042 02:15:43,115 --> 02:15:45,717 THEY SAID THERE'S A 16 YEAR LAG 3043 02:15:45,717 --> 02:15:49,254 BETWEEN FINDING SOMETHING OUT 3044 02:15:49,254 --> 02:15:52,157 AND IMPLEMENTING AND THAT'S 3045 02:15:52,157 --> 02:15:53,025 OPTIMISTIC. 3046 02:15:53,025 --> 02:15:54,259 CAPACITY. 3047 02:15:54,259 --> 02:15:56,995 WE NEED TO DEVELOP AND DIVERSIFY 3048 02:15:56,995 --> 02:15:59,464 THE WORKFORCE AND OPERATIONAL. 3049 02:15:59,464 --> 02:16:05,737 WE HAVE A DEIA WIN OUR OFFICE 3050 02:16:05,737 --> 02:16:09,741 AND RESEARCH AND AIM TO BUILD 3051 02:16:09,741 --> 02:16:12,210 PARTNERSHIPS AND COLLABORATION 3052 02:16:12,210 --> 02:16:13,445 WITHIN NIH AND THE COLLABORATION 3053 02:16:13,445 --> 02:16:17,716 AND ENHANCE COMMUNICATION WITH 3054 02:16:17,716 --> 02:16:21,853 THE SIGN SCIENTISTS AND WIDER 3055 02:16:21,853 --> 02:16:31,997 PUBLIC. 3056 02:16:40,038 --> 02:16:42,908 EVERY INDIVIDUAL HAS A RIGHT TO 3057 02:16:42,908 --> 02:16:44,242 A GOOD HEALTH OUTCOME AND LOOK 3058 02:16:44,242 --> 02:16:46,178 AT OUR PRIORITIES AND AGAIN IN 3059 02:16:46,178 --> 02:16:47,779 TERMS OF THE RESEARCH THAT WE 3060 02:16:47,779 --> 02:16:48,013 FUND. 3061 02:16:48,013 --> 02:16:50,549 A COUPLE SPECIFIC INITIATIVES 3062 02:16:50,549 --> 02:16:53,018 THAT WE LOOKED AT IN THE BRAIN, 3063 02:16:53,018 --> 02:16:56,621 HUGE BRAIN INITIATIVE AT THE 3064 02:16:56,621 --> 02:16:57,022 NIH. 3065 02:16:57,022 --> 02:17:00,659 WE HAVE A SPECIFIC SUB GROUP OF 3066 02:17:00,659 --> 02:17:05,731 WORK IN BRAIN BEHAVIOR 3067 02:17:05,731 --> 02:17:07,165 QUANTIFICATION SYNCHRONIZATION. 3068 02:17:07,165 --> 02:17:11,236 WE SUPPORT THE VALIDATION OF 3069 02:17:11,236 --> 02:17:13,138 NEXT PLATFORMS AND PRECISELY 3070 02:17:13,138 --> 02:17:14,439 QUANTIFY BEHAVIORS TO RECORDED 3071 02:17:14,439 --> 02:17:15,340 BRAIN ACTIVITY. 3072 02:17:15,340 --> 02:17:17,376 IT'S A WAY TO LEVERAGE THE WORK 3073 02:17:17,376 --> 02:17:20,679 I'M GOING TO BRING TO TIE IN THE 3074 02:17:20,679 --> 02:17:21,913 BEHAVIORAL CONNECTIONS THAT ARE 3075 02:17:21,913 --> 02:17:23,548 SO IMPORTANT AND WE'RE HONORED 3076 02:17:23,548 --> 02:17:26,518 TO BE ASKED TO ADMINISTER $12.5 3077 02:17:26,518 --> 02:17:30,956 MILLION IN ADDITION TO OUR 3078 02:17:30,956 --> 02:17:32,624 BUDGET ALMOST A QUARTER OF OUR 3079 02:17:32,624 --> 02:17:33,925 BUDGET TO FUND FIREARMS 3080 02:17:33,925 --> 02:17:35,227 PREVENTION RESEARCH. 3081 02:17:35,227 --> 02:17:36,728 THE FIRST TIME CONGRESSMAN DATED 3082 02:17:36,728 --> 02:17:38,530 THIS AND WE'RE GOING INTO OUR 3083 02:17:38,530 --> 02:17:41,333 FOURTH YEAR OF FUNDING IN THIS 3084 02:17:41,333 --> 02:17:41,533 AREA. 3085 02:17:41,533 --> 02:17:44,236 AND WE'VE DONE A GREAT JOB 3086 02:17:44,236 --> 02:17:47,072 PUTTING UP NOFOs AND GETTING 3087 02:17:47,072 --> 02:17:48,740 WORK IN THAT AND ONE IS A 3088 02:17:48,740 --> 02:17:51,276 PREVENTION THREAT WORK AWARD. 3089 02:17:51,276 --> 02:17:52,577 FOR YEARS THERE WASN'T MUCH 3090 02:17:52,577 --> 02:17:54,012 RESEARCH THE IN PREVENTION AND 3091 02:17:54,012 --> 02:17:55,313 WE'RE DEVELOPING UP THE 3092 02:17:55,313 --> 02:17:57,449 WORKFORCE AND INFRASTRUCTURE TO 3093 02:17:57,449 --> 02:17:59,785 FUND THE AWARDS. 3094 02:17:59,785 --> 02:18:00,318 THEY'RE ACROSS THE UNITED 3095 02:18:00,318 --> 02:18:03,055 STATES. 3096 02:18:03,055 --> 02:18:04,656 AND OUR TRAINING INITIATIVES THE 3097 02:18:04,656 --> 02:18:08,427 WORKFORCE DEVELOPMENT IS A BIG 3098 02:18:08,427 --> 02:18:10,529 PART AND IN CHARGE OF OUR T32 3099 02:18:10,529 --> 02:18:12,264 PROGRAM AND THE TA DA PROGRAM 3100 02:18:12,264 --> 02:18:13,632 AND WORK IN ADVANCED DATA 3101 02:18:13,632 --> 02:18:15,734 ANALYTICS FOR BEHAVIORAL AND 3102 02:18:15,734 --> 02:18:17,869 SOCIAL SCIENCES. 3103 02:18:17,869 --> 02:18:22,841 WE HAVE FIVE T32 AWARDS AND 3104 02:18:22,841 --> 02:18:23,308 POPULATION HEALTH AND 3105 02:18:23,308 --> 02:18:26,044 COMPUTATIONAL AND SOCIAL SCIENCE 3106 02:18:26,044 --> 02:18:30,649 TRAINING AND HAVE OUR R35 SHORT 3107 02:18:30,649 --> 02:18:35,153 COURSES ON METHODOLOGIES AND 3108 02:18:35,153 --> 02:18:35,554 APPROACHES. 3109 02:18:35,554 --> 02:18:39,691 WE HAVE RESEARCH PROGRAMS AND 3110 02:18:39,691 --> 02:18:40,959 TRANS DISCIPLINARY TRAINING TO 3111 02:18:40,959 --> 02:18:41,359 ADVANCE RESEARCH. 3112 02:18:41,359 --> 02:18:43,395 DIFFERENT WAYS WE'RE DEVELOPING 3113 02:18:43,395 --> 02:18:44,162 THE WORKFORCE. 3114 02:18:44,162 --> 02:18:45,464 WE HAVE TIME SENSITIVE 3115 02:18:45,464 --> 02:18:46,832 OPPORTUNITIES FOR RESEARCH. 3116 02:18:46,832 --> 02:18:51,136 THIS CAME FROM THE COVID 3117 02:18:51,136 --> 02:18:52,938 EPIDEMIC AND NEEDED TO PIVOT 3118 02:18:52,938 --> 02:18:53,472 QUICKLY. 3119 02:18:53,472 --> 02:18:55,640 WE'RE THINKING OF PLANNING THREE 3120 02:18:55,640 --> 02:18:57,042 YEARS AHEAD WITH THE TIME 3121 02:18:57,042 --> 02:18:59,444 SENSITIVE OPPORTUNITY IF YOU 3122 02:18:59,444 --> 02:19:02,280 WANTED TO LOOK AT AND ADD 3123 02:19:02,280 --> 02:19:02,981 RESEARCH WE COULD DO THAT WITH A 3124 02:19:02,981 --> 02:19:07,786 SUPPLEMENT. 3125 02:19:07,786 --> 02:19:10,088 THEN WE HAVE SUPPORT FOR 3126 02:19:10,088 --> 02:19:12,858 MATERNAL HEALTH INITIATIVES TO 3127 02:19:12,858 --> 02:19:14,526 IMPROVE CAREER ENHANCEMENT AWARD 3128 02:19:14,526 --> 02:19:17,262 AND K18 ADVANCING THE STUDY OF 3129 02:19:17,262 --> 02:19:19,064 INTIMATE PARTNER VIOLENCE IN THE 3130 02:19:19,064 --> 02:19:21,733 CONTEXT OF MATERNITY, MORBIDITY 3131 02:19:21,733 --> 02:19:23,168 AND MORTALITY AND A SHORT COURSE 3132 02:19:23,168 --> 02:19:25,737 ON TECHNIQUES AND PLEASURING 3133 02:19:25,737 --> 02:19:28,773 INTIMATE PARTNER VIOLENCE, R25 3134 02:19:28,773 --> 02:19:34,045 AND TRAINING AWARD IN THESE 3135 02:19:34,045 --> 02:19:37,716 AREAS. 3136 02:19:37,716 --> 02:19:43,355 WE HAVE THE K18 WITH NOFOs 3137 02:19:43,355 --> 02:19:45,357 COMING OUT IN AWARDS ANTICIPATED 3138 02:19:45,357 --> 02:19:45,924 2024. 3139 02:19:45,924 --> 02:19:51,930 YOU CAN SEE WITH THE LEADS 3140 02:19:51,930 --> 02:20:01,373 WORKING WITH YOU ALL IN THESE. 3141 02:20:01,373 --> 02:20:08,713 PART OF THE WORK WE DO WE HAVE 3142 02:20:08,713 --> 02:20:10,749 OSDP FOR DISABILITIES WE HAVE 3143 02:20:10,749 --> 02:20:12,551 PROVIDED CO-SPONSORSHIP FOR THE 3144 02:20:12,551 --> 02:20:15,687 WORKSHOP ON ABLISM AND MEDICINE 3145 02:20:15,687 --> 02:20:16,655 CLINICAL RESEARCH AND 3146 02:20:16,655 --> 02:20:17,923 CO-SPONSORED THE RFA ON 3147 02:20:17,923 --> 02:20:21,293 UNDERSTANDING AND MITIGATING 3148 02:20:21,293 --> 02:20:22,561 HEALTH DISPARITIES EXPERIENCED 3149 02:20:22,561 --> 02:20:25,564 IN PEOPLE WITH DISABILITIES IN 3150 02:20:25,564 --> 02:20:28,366 THE OFFICE AND NIMHD AS AN 3151 02:20:28,366 --> 02:20:30,001 EX-OFFICIO MEMBER AND LOOKING AT 3152 02:20:30,001 --> 02:20:34,372 THE DISPARITIES AND AS PLUG FOR 3153 02:20:34,372 --> 02:20:36,908 UPCOMING EVENTS STARTING IN END 3154 02:20:36,908 --> 02:20:41,179 OF JUNE WE HAVE SCIENTIFIC 3155 02:20:41,179 --> 02:20:43,148 CONFERENCING HYBRID-VIRTUAL, IN 3156 02:20:43,148 --> 02:20:43,381 PERSON. 3157 02:20:43,381 --> 02:20:45,383 THE PROS AND CONS AND WHAT DOES 3158 02:20:45,383 --> 02:20:47,819 RESEARCH SAY ABOUT THAT AND TWO 3159 02:20:47,819 --> 02:20:52,557 DIRECTOR'S WEBINARS ONE BY REC 3160 02:20:52,557 --> 02:20:55,460 BECCA LONG ON AGE DISPARITIES 3161 02:20:55,460 --> 02:20:59,531 AND ONE ON JUSTICE INVOLVED 3162 02:20:59,531 --> 02:21:00,966 INDIVIDUALS AND CHECK OUT OUR 3163 02:21:00,966 --> 02:21:02,701 WEBSITE AND THE RESOURCES WE 3164 02:21:02,701 --> 02:21:04,836 HAVE FOR JUNIOR INVESTIGATORS 3165 02:21:04,836 --> 02:21:07,172 AND FIND OUT MORE ON WHAT WE'RE 3166 02:21:07,172 --> 02:21:07,372 DOING. 3167 02:21:07,372 --> 02:21:17,716 THANK YOU VERY MUCH. 3168 02:21:27,792 --> 02:21:28,493 >> THANK YOU. 3169 02:21:28,493 --> 02:21:30,528 WE HAVE ABOUT FIVE MINUTES FOR 3170 02:21:30,528 --> 02:21:31,096 QUESTION. 3171 02:21:31,096 --> 02:21:32,264 >> VERY USEFUL. 3172 02:21:32,264 --> 02:21:32,697 VERY INTERESTING. 3173 02:21:32,697 --> 02:21:38,003 A COUPLE QUESTIONS I'LL FOCUS ON 3174 02:21:38,003 --> 02:21:44,009 ONE REALLY. 3175 02:21:44,009 --> 02:21:47,846 YOU TALK ABOUT THE SOCIAL 3176 02:21:47,846 --> 02:21:49,648 DETERMINATES OF HEALTH AND 3177 02:21:49,648 --> 02:21:53,018 PREVIOUSLY WOE WERE TRACKING THE 3178 02:21:53,018 --> 02:21:54,119 DATA AVAILABLE IN SWEDEN. 3179 02:21:54,119 --> 02:21:57,355 ACTUALLY IN THE U.S. WE'RE 3180 02:21:57,355 --> 02:22:01,126 TRYING TO DEVELOP SIMILAR DATA 3181 02:22:01,126 --> 02:22:02,661 SETS THAT TRACK INDIVIDUALS FOR 3182 02:22:02,661 --> 02:22:05,463 LONG -- NOT THEIR ENTIRE LIFE 3183 02:22:05,463 --> 02:22:07,165 TIME BUT LONG STRETCHES OF THEIR 3184 02:22:07,165 --> 02:22:11,503 LIFE AND STRIKES ME IT'S LIKE AN 3185 02:22:11,503 --> 02:22:12,604 OBVIOUS AREA FOLKS IN YOUR 3186 02:22:12,604 --> 02:22:15,607 BRANCH MAY BE INTERESTED IN 3187 02:22:15,607 --> 02:22:17,609 INCORPORATING SOME OF THE SHORT 3188 02:22:17,609 --> 02:22:20,679 AND LONGER TERM SOCIAL OUTCOMES 3189 02:22:20,679 --> 02:22:21,346 ASSOCIATED WITH HEALTH. 3190 02:22:21,346 --> 02:22:27,786 I DON'T KNOW IF YOU COULD SPEAK 3191 02:22:27,786 --> 02:22:29,120 TO THAT AND THERE'S HEALTH SHOCK 3192 02:22:29,120 --> 02:22:33,525 AND SOCIAL IMPLICATION THAT 3193 02:22:33,525 --> 02:22:35,727 CREATES SOMETHING THAT FEEDS 3194 02:22:35,727 --> 02:22:37,128 INTO HEALTH AND A FUTURE. 3195 02:22:37,128 --> 02:22:38,296 >> WHAT ARE YOU THINKING? 3196 02:22:38,296 --> 02:22:41,032 WHAT ARE EXAMPLES OF THAT. 3197 02:22:41,032 --> 02:22:43,968 >> WE'RE SO FOCUSSED ON THE 3198 02:22:43,968 --> 02:22:45,737 HEALTH OUTCOMES AND MORBIDITY 3199 02:22:45,737 --> 02:22:47,806 AND MORTALITY AT AN INDIVIDUAL 3200 02:22:47,806 --> 02:22:48,073 LEVEL. 3201 02:22:48,073 --> 02:22:50,475 >> ANYTHING THAT AFFECTS HEALTH 3202 02:22:50,475 --> 02:22:51,176 PARTICULARLY EARLY IN LIFE IS 3203 02:22:51,176 --> 02:22:53,745 GOING TO HAVE ALL KINDS OF 3204 02:22:53,745 --> 02:22:55,914 SOCIAL AND ECONOMIC IMPACTS ON 3205 02:22:55,914 --> 02:22:58,049 EDUCATIONAL ATTAINMENT, ON LABOR 3206 02:22:58,049 --> 02:23:00,418 MARKET OUTCOMES AND THAT OF 3207 02:23:00,418 --> 02:23:03,421 COURSE WILL THEN FEED INTO 3208 02:23:03,421 --> 02:23:03,955 FUTURE HEALTH. 3209 02:23:03,955 --> 02:23:06,358 SO THIS -- WE TALKED ABOUT IT 3210 02:23:06,358 --> 02:23:08,259 BEFORE THINKING MORE ABOUT THE 3211 02:23:08,259 --> 02:23:11,696 FULL LIFE CYCLE OF AN INDIVIDUAL 3212 02:23:11,696 --> 02:23:17,202 AND HOW HEALTH CONDITION AND 3213 02:23:17,202 --> 02:23:22,941 SOCIAL CONDITIONS. 3214 02:23:22,941 --> 02:23:24,209 >> I'LL LOOK INTO THAT. 3215 02:23:24,209 --> 02:23:25,510 WE DO FOCUS MORE ON THE 3216 02:23:25,510 --> 02:23:30,648 INDIVIDUAL OUTCOMES AND AS WE 3217 02:23:30,648 --> 02:23:34,819 THINK ABOUT DETERMINATES AND 3218 02:23:34,819 --> 02:23:36,755 EARLY ON THERE'S A GREATER 3219 02:23:36,755 --> 02:23:38,690 IMPACT THE LONGER INVOLVED BUT 3220 02:23:38,690 --> 02:23:40,658 WE DON'T OFTEN FOLLOW THEM AND 3221 02:23:40,658 --> 02:23:42,460 LOOK AT THE BI-DIRECTIONAL 3222 02:23:42,460 --> 02:23:42,927 IMPACT. 3223 02:23:42,927 --> 02:23:44,863 THAT'S A GOOD POINT. 3224 02:23:44,863 --> 02:23:47,399 >> THERE ARE FOLKS IN THE CENSUS 3225 02:23:47,399 --> 02:23:50,001 BUREAU TRYING VERY HARD TO 3226 02:23:50,001 --> 02:23:51,770 CREATE THESE LONGITUDINAL DATA 3227 02:23:51,770 --> 02:23:54,939 SETS THAT FOLLOW INDIVIDUALS 3228 02:23:54,939 --> 02:23:57,709 OVER THEIR ENTIRE LIFE TIME AND 3229 02:23:57,709 --> 02:24:00,779 SEEMS THERE SHOULD BE MORE 3230 02:24:00,779 --> 02:24:01,146 COMMUNICATION. 3231 02:24:01,146 --> 02:24:03,548 >> WE HAVE LONGITUDINAL DATA AND 3232 02:24:03,548 --> 02:24:05,717 WE'RE TRYING TO BETTER 3233 02:24:05,717 --> 02:24:06,985 INCORPORATE THE SOCIAL 3234 02:24:06,985 --> 02:24:08,953 DETERMINATES AND LOOK AT 3235 02:24:08,953 --> 02:24:09,621 BI-DIRECTIONAL INFLUENCES WOULD 3236 02:24:09,621 --> 02:24:10,188 BE A GOOD AREA OF RESEARCH. 3237 02:24:10,188 --> 02:24:14,592 THANK YOU. 3238 02:24:14,592 --> 02:24:16,394 >> SUSAN. 3239 02:24:16,394 --> 02:24:17,562 >> THANK YOU. 3240 02:24:17,562 --> 02:24:20,432 I THINK MAYBE FOLLOWING UP ON 3241 02:24:20,432 --> 02:24:22,333 THIS I WONDER AND MAYBE THIS IS 3242 02:24:22,333 --> 02:24:23,868 SOMETHING YOU MAY NEED TO THINK 3243 02:24:23,868 --> 02:24:25,203 MORE ABOUT AS WELL BUT I 3244 02:24:25,203 --> 02:24:27,539 APPRECIATED YOU HIGHLIGHTING THE 3245 02:24:27,539 --> 02:24:29,374 IMPORTANCE OF THE MULTI-LEVEL 3246 02:24:29,374 --> 02:24:31,342 RESEARCH AND THE COMPLEXITY OF 3247 02:24:31,342 --> 02:24:34,245 IT AND I'M JUST WONDERING IF YOU 3248 02:24:34,245 --> 02:24:37,882 HAVE THOUGHTS ABOUT WHAT FUNDING 3249 02:24:37,882 --> 02:24:39,284 SOURCES COULD BE DOING MORE 3250 02:24:39,284 --> 02:24:40,919 EFFECTIVELY TO HELP SUPPORT THAT 3251 02:24:40,919 --> 02:24:42,620 KIND OF RESEARCH WHICH I THINK 3252 02:24:42,620 --> 02:24:45,190 HAS DIFFERENT DIMENSIONS TO IT 3253 02:24:45,190 --> 02:24:47,892 MAYBE THAN MAYBE SOME OF THE 3254 02:24:47,892 --> 02:24:48,893 MORE INDIVIDUALLY ORIENTED 3255 02:24:48,893 --> 02:24:49,260 TRADITIONAL -- 3256 02:24:49,260 --> 02:24:53,832 >> IT'S EXPENSIVE TO DO. 3257 02:24:53,832 --> 02:24:59,270 I CAN'T CRITICIZE NIH AND TELL 3258 02:24:59,270 --> 02:25:00,905 YOU THE R01 LEVEL HAS BEEN TO UP 3259 02:25:00,905 --> 02:25:02,807 BUT IT'S DIFFICULT TO DO THE 3260 02:25:02,807 --> 02:25:03,741 RESEARCH THE FUNDING LEVELS WERE 3261 02:25:03,741 --> 02:25:06,644 NOT SET UP TO DO THAT AND HAVE 3262 02:25:06,644 --> 02:25:09,514 TO BE CREATIVE IN HOW TO GO 3263 02:25:09,514 --> 02:25:11,883 ABOUT DOING IT AND MAYBE 3264 02:25:11,883 --> 02:25:18,423 COMBINING DATA SET AND 3265 02:25:18,423 --> 02:25:19,557 PREFERABLY OTHER LEVELS OF 3266 02:25:19,557 --> 02:25:21,359 INFLUENCE AND THERE'S A 3267 02:25:21,359 --> 02:25:22,627 BUDGETARY CONSTRAINT AND THERE'S 3268 02:25:22,627 --> 02:25:24,062 A LACK OF IMAGINATION AND IT'S 3269 02:25:24,062 --> 02:25:26,130 MORE THE TEAM SCIENCE APPROACH 3270 02:25:26,130 --> 02:25:27,599 THAT NEEDS TO BE IMPLEMENTED 3271 02:25:27,599 --> 02:25:31,135 MORE THAN IT IS ACTUALLY THE 3272 02:25:31,135 --> 02:25:31,769 VOLUNTARY CONSTRAINTS BUT IT'S 3273 02:25:31,769 --> 02:25:38,543 DIFFICULT. 3274 02:25:38,543 --> 02:25:42,447 YOU LIKE THE IDEAS OF THE R25 3275 02:25:42,447 --> 02:25:44,015 AND HELP DEVELOP SKILLS IN 3276 02:25:44,015 --> 02:25:45,717 PEOPLE AND ALSO THINKING ABOUT 3277 02:25:45,717 --> 02:25:48,686 R25 IS NOT GOING TO CHANGE A 3278 02:25:48,686 --> 02:25:51,256 BIOMEDICAL RESEARCHER INTO A 3279 02:25:51,256 --> 02:25:53,725 BEHAVIORAL SCIENTIST AND WILL 3280 02:25:53,725 --> 02:25:56,995 GIVE THE LANGUAGE TO TALK TO 3281 02:25:56,995 --> 02:25:59,898 SOMEONE AND FINDING WAYS TO 3282 02:25:59,898 --> 02:26:01,733 COMMUNICATE THAT WOULD BE A GOOD 3283 02:26:01,733 --> 02:26:03,201 INVESTMENT OF YOUR OFFICE. 3284 02:26:03,201 --> 02:26:05,737 >> IT DEPENDS ON PEOPLE BEING 3285 02:26:05,737 --> 02:26:09,641 WELL TRAINED UP THEIR 3286 02:26:09,641 --> 02:26:09,941 DISCIPLINED. 3287 02:26:09,941 --> 02:26:12,544 AND THE LANGUAGE OF THE OTHERS 3288 02:26:12,544 --> 02:26:13,945 AND THE OPPORTUNITIES TOWARDS 3289 02:26:13,945 --> 02:26:18,082 OTHER AREAS THAT'S IMPORTANT. 3290 02:26:18,082 --> 02:26:19,784 >> THANK YOU SO MUCH. 3291 02:26:19,784 --> 02:26:21,319 CLEARLY WE FOUND THE RIGHT 3292 02:26:21,319 --> 02:26:22,086 LEADER IN YOU. 3293 02:26:22,086 --> 02:26:23,788 YOU'RE VERY CLEAR HOW TO CREATE 3294 02:26:23,788 --> 02:26:24,455 SYNERGY. 3295 02:26:24,455 --> 02:26:29,694 THAT'S A KEY WORD YOU 3296 02:26:29,694 --> 02:26:36,334 HIGHLIGHTED. 3297 02:26:36,334 --> 02:26:39,137 WE HAVE TO DO INTERVENTIONS 3298 02:26:39,137 --> 02:26:41,406 POWERFUL ENOUGH TO DEFECT 3299 02:26:41,406 --> 02:26:43,107 EFFECTS AROUND OUTCOMES OVER A 3300 02:26:43,107 --> 02:26:44,475 LONGITUDINAL PERIOD. 3301 02:26:44,475 --> 02:26:45,743 HAVE YOU BEEN LOOKING AT THE 3302 02:26:45,743 --> 02:26:49,714 OTHER ANALYTIC MODELS AND 3303 02:26:49,714 --> 02:26:51,482 APPROACHES AT OUR FINGERPRINTS 3304 02:26:51,482 --> 02:26:52,784 WHERE WE DIDN'T HAVE MODELS AND 3305 02:26:52,784 --> 02:26:55,887 OTHER WAYS TO USE MORE OF THE 3306 02:26:55,887 --> 02:27:03,861 DEEP LARGER LANGUAGE MODELS AN 3307 02:27:03,861 --> 02:27:04,929 CONNECT DATA SETS TO ANSWER ALL 3308 02:27:04,929 --> 02:27:07,765 THE IMPORTANT INTERACTIONS AND 3309 02:27:07,765 --> 02:27:08,800 DELAYED TEMPORAL EFFECTS. 3310 02:27:08,800 --> 02:27:10,001 >> GREAT SUGGEST. 3311 02:27:10,001 --> 02:27:11,636 I THINK I SKIPPED OVER SOME OF 3312 02:27:11,636 --> 02:27:13,805 OUR RESEARCH PRIORITIES. 3313 02:27:13,805 --> 02:27:19,077 THE SECOND IS INVESTIGATION 3314 02:27:19,077 --> 02:27:22,413 INNOVATION. 3315 02:27:22,413 --> 02:27:23,715 . 3316 02:27:23,715 --> 02:27:25,917 AND WE LOOK AT METHODOLOGICAL 3317 02:27:25,917 --> 02:27:27,352 DESIGNS AND ANALYSIS AND I'M 3318 02:27:27,352 --> 02:27:28,653 EXCITED ABOUT A.I. AND THE 3319 02:27:28,653 --> 02:27:33,558 POTENTIAL OF WHAT IT CAN DO FOR 3320 02:27:33,558 --> 02:27:33,858 US. 3321 02:27:33,858 --> 02:27:36,961 I THINK AND LOOKING AT THE 3322 02:27:36,961 --> 02:27:39,030 BEHAVIORAL AND SOCIAL SCIENCE 3323 02:27:39,030 --> 02:27:40,365 AND GETTING A BETTER GRIP 3324 02:27:40,365 --> 02:27:41,599 CONCEPTUALLY WHAT WE'RE LOOKING 3325 02:27:41,599 --> 02:27:44,602 AT THAT ARE DEFINITION OF KEY 3326 02:27:44,602 --> 02:27:46,537 TERMS AND I THINK THAT WILL BE A 3327 02:27:46,537 --> 02:27:48,206 HUGE GROWTH AREA TO LOOK AT 3328 02:27:48,206 --> 02:27:52,677 DIFFERENT KINDS OF ANALYTIC 3329 02:27:52,677 --> 02:27:54,245 TECHNIQUES AND DIFFERENT KINDS 3330 02:27:54,245 --> 02:27:56,814 OF DESIGNS METHODOLOGICAL 3331 02:27:56,814 --> 02:28:00,351 DESIGNS THAT'S WHERE THE R25 3332 02:28:00,351 --> 02:28:05,823 FOCUSES ON AND ANALYZING DATA TO 3333 02:28:05,823 --> 02:28:07,959 GET AT MULTI-LEVEL PATIENTS. 3334 02:28:07,959 --> 02:28:08,226 THANK YOU. 3335 02:28:08,226 --> 02:28:18,436 >> I THINK WE NEED TO MOVE ON. 3336 02:28:18,436 --> 02:28:20,471 THANK YOU, GREAT PRESENTATION. 3337 02:28:20,471 --> 02:28:23,508 YOUR WELCOME TO STAY FOR THE 3338 02:28:23,508 --> 02:28:24,275 SUBSEQUENT PRESENTATION I THINK 3339 02:28:24,275 --> 02:28:25,777 YOU'LL BE INTERESTED IN. 3340 02:28:25,777 --> 02:28:27,478 THE SCIENTIFIC THEME OF THE 3341 02:28:27,478 --> 02:28:29,714 COUNCIL MEETING IS LARGE DATA 3342 02:28:29,714 --> 02:28:33,751 ANALYSIS AND ARTIFICIAL 3343 02:28:33,751 --> 02:28:34,385 INTELLIGENCE IN NICHD RESEARCH. 3344 02:28:34,385 --> 02:28:39,157 WE'LL NOW HEAR A SCIENTIFIC 3345 02:28:39,157 --> 02:28:47,899 PRESENTATION FROM DOCTORSAGAGE 3346 02:28:47,899 --> 02:28:54,005 KATHY EDIN AND MABLG YOU 3347 02:28:54,005 --> 02:28:54,272 SALGANIK. 3348 02:28:54,272 --> 02:28:57,742 IT'S A NATIONAL REPRESENTATIVE 3349 02:28:57,742 --> 02:29:05,717 ONGOING LONGITUDINAL BOTH COHORT 3350 02:29:05,717 --> 02:29:13,291 SURVEY OF 4,998 DRAWN FROM LARGE 3351 02:29:13,291 --> 02:29:16,861 STUDIES. 3352 02:29:16,861 --> 02:29:17,462 THEY'LL DESCRIBE RECENT WORK 3353 02:29:17,462 --> 02:29:20,131 THAT HIGHLIGHTS THE USE OF 3354 02:29:20,131 --> 02:29:22,100 APPROACHES TO PREDICT SOCIAL AND 3355 02:29:22,100 --> 02:29:23,101 BEHAVIORAL OUTCOMES. 3356 02:29:23,101 --> 02:29:26,704 DR. KATHY EDIN IS THE WILLIAM 3357 02:29:26,704 --> 02:29:28,706 CHURCH OSBORNE PROFESSOR OF 3358 02:29:28,706 --> 02:29:33,344 SOCIOLOGY AND PUBLIC AFFAIRS AT 3359 02:29:33,344 --> 02:29:34,145 THE PRINCETON UNIVERSITY SCHOOL 3360 02:29:34,145 --> 02:29:38,516 AND INTERNATIONAL AFFAIRS AND 3361 02:29:38,516 --> 02:29:39,650 THE DIRECTOR OF THE CENTER FOR 3362 02:29:39,650 --> 02:29:41,586 RESEARCH ON CHILD WELL BEING. 3363 02:29:41,586 --> 02:29:44,388 SHE CONDUCTS RESEARCH ON 3364 02:29:44,388 --> 02:29:44,622 POVERTY. 3365 02:29:44,622 --> 02:29:48,726 SHE'S AN ELECTED MEMBER OFF THE 3366 02:29:48,726 --> 02:29:50,094 NATIONAL ACADEMIES OF SCIENCES, 3367 02:29:50,094 --> 02:29:51,262 AMERICAN ACADEMY OF POLITICAL 3368 02:29:51,262 --> 02:29:55,066 AND SOCIAL SCIENCES AND THE 3369 02:29:55,066 --> 02:29:57,502 NATIONAL ACADEMY OF SOCIAL 3370 02:29:57,502 --> 02:30:00,505 INSURANCE AND ARTS AND SCIENCES. 3371 02:30:00,505 --> 02:30:04,742 DR. SALGANIK IS A PROFESSOR AT 3372 02:30:04,742 --> 02:30:08,246 PRINCETON UNIVERSITY CONDUCTING 3373 02:30:08,246 --> 02:30:08,946 COMPUTATIONAL SOCIAL SCIENCE AND 3374 02:30:08,946 --> 02:30:10,481 RESEARCH AND RECEIVED NUMEROUS 3375 02:30:10,481 --> 02:30:12,650 AWARDS AND HIS WORK HAS BEEN 3376 02:30:12,650 --> 02:30:17,722 FUNDED BY THE NIH, MULTIPLE 3377 02:30:17,722 --> 02:30:19,791 FOUNDATIONS AND FACEBOOK AND 3378 02:30:19,791 --> 02:30:21,959 GOOGLE AND SERVED AS THE 3379 02:30:21,959 --> 02:30:23,895 PROFESSOR IN RESIDENCE IN NEW 3380 02:30:23,895 --> 02:30:25,563 YORK TIMES TO 2019. 3381 02:30:25,563 --> 02:30:27,298 WELCOME BOTH OF YOU AND HAND THE 3382 02:30:27,298 --> 02:30:29,734 ENVIRONMENT PODIUM OVER TO YOU. 3383 02:30:29,734 --> 02:30:39,911 THANK YOU. 3384 02:30:47,985 --> 02:30:50,555 >> MY BACKGROUND IS IN 3385 02:30:50,555 --> 02:30:51,556 COMPUTATIONAL AND SOCIAL 3386 02:30:51,556 --> 02:30:53,724 SCIENCES AND SOCIAL RESEARCH IN 3387 02:30:53,724 --> 02:30:59,263 THE DIGITAL AGE IS A BOOK I 3388 02:30:59,263 --> 02:31:00,598 WROTE AND FOR DATA SCIENCES WHO 3389 02:31:00,598 --> 02:31:02,633 WANT TO DO MORE SOCIAL SCIENCE 3390 02:31:02,633 --> 02:31:03,801 AND ANYONE INTERESTED IN THE 3391 02:31:03,801 --> 02:31:07,605 HYBRID OF THESE TWO FIELDS. 3392 02:31:07,605 --> 02:31:09,373 WHEN PEOPLE THINK ABOUT 3393 02:31:09,373 --> 02:31:09,974 COMPUTATIONAL SOCIAL SCIENCE 3394 02:31:09,974 --> 02:31:11,742 THEY OFTEN THINK OF NEW SOURCES 3395 02:31:11,742 --> 02:31:13,177 OF DATA. 3396 02:31:13,177 --> 02:31:14,545 THEY THINK ABOUT MOBILE PHONE 3397 02:31:14,545 --> 02:31:17,081 DATA OR ONLINE DIGITAL DATA AND 3398 02:31:17,081 --> 02:31:18,649 SO ON. 3399 02:31:18,649 --> 02:31:22,086 WHAT I WANT TO ARGUE IS THAT 3400 02:31:22,086 --> 02:31:23,621 COMPUTATIONAL SOCIAL SCIENCE 3401 02:31:23,621 --> 02:31:25,723 ALLOWS US TO ASK NEW QUESTIONS 3402 02:31:25,723 --> 02:31:27,291 WITH DATA THAT WE ALREADY HAVE 3403 02:31:27,291 --> 02:31:29,727 AND I'M GOING TO GIVE AN 3404 02:31:29,727 --> 02:31:32,697 ILSTRAIGHT ADMINISTRATION OF 3405 02:31:32,697 --> 02:31:32,897 THAT. 3406 02:31:32,897 --> 02:31:38,803 THE PROJECT FOCUSES ON THIS 3407 02:31:38,803 --> 02:31:41,739 QUESTION OF WHAT WE CALL LIFE 3408 02:31:41,739 --> 02:31:44,175 TRAJECTORY TASK AND GIVEN DATA 3409 02:31:44,175 --> 02:31:45,376 OF A PERSON'S ENVIRONMENT HOW 3410 02:31:45,376 --> 02:31:49,013 WELL CAN WE PREDICT THEIR 3411 02:31:49,013 --> 02:31:49,580 OUTCOMES. 3412 02:31:49,580 --> 02:31:52,483 THIS QUESTION IS OBVIOUS AND 3413 02:31:52,483 --> 02:31:54,952 HERETICAL WHEN I HANG OUT WITH 3414 02:31:54,952 --> 02:32:01,058 COMPUTER SCIENCE -- SCIENTISTS 3415 02:32:01,058 --> 02:32:02,426 THE THINK THIS IS THE FIRST 3416 02:32:02,426 --> 02:32:04,462 QUESTION TO ASK AND OTHERS DONT 3417 02:32:04,462 --> 02:32:05,296 CHOOSE TO ASK THIS QUESTION. 3418 02:32:05,296 --> 02:32:07,064 WHEN YOU TALK TO COLLEAGUES IN 3419 02:32:07,064 --> 02:32:07,732 SOCIAL SCIENCE THEY THINK THIS 3420 02:32:07,732 --> 02:32:10,735 IS NOT A QUESTION WE SHOULD BE 3421 02:32:10,735 --> 02:32:16,440 ASKING OR NOT A PARTICULARLY 3422 02:32:16,440 --> 02:32:26,817 INTERESTING QUESTION. 3423 02:32:34,392 --> 02:32:40,064 AND THIS WAS WRITTEN BY CICERO 3424 02:32:40,064 --> 02:32:41,732 AND HAS TOPIC ON STAYING POWER 3425 02:32:41,732 --> 02:32:43,067 AND IT'S EXCITING AND SCARY. 3426 02:32:43,067 --> 02:32:48,839 ON ONE HAND WE ALL KNOW ABOUT 3427 02:32:48,839 --> 02:32:51,842 THE POTENTIAL FOR ALGORITHMIC 3428 02:32:51,842 --> 02:32:54,645 SYSTEMS TO BE BIASSED AND KNOW 3429 02:32:54,645 --> 02:32:56,280 ABOUT DATA AND RESEARCH AND 3430 02:32:56,280 --> 02:32:56,881 HELPING PEOPLE MAKE BETTER 3431 02:32:56,881 --> 02:32:57,848 DECISIONS. 3432 02:32:57,848 --> 02:32:59,116 THINKING ABOUT THE PROBLEM 3433 02:32:59,116 --> 02:33:01,719 REQUIRES THINKING ABOUT ALL OF 3434 02:33:01,719 --> 02:33:04,689 THESE TENSIONS SIMULTANEOUSLY. 3435 02:33:04,689 --> 02:33:07,725 AND SO AN EXAMPLE MANY OF A 3436 02:33:07,725 --> 02:33:08,626 DECISION THIS IS A NEW YORK 3437 02:33:08,626 --> 02:33:11,062 TIMES MAGAZINE ARTICLE FROM 3438 02:33:11,062 --> 02:33:13,097 YEARS AGO ABOUT WHAT'S HAPPENING 3439 02:33:13,097 --> 02:33:16,334 IN ALEGHENNY COUNTY, 3440 02:33:16,334 --> 02:33:17,735 PENNSYLVANIA, PITTSBURGH, AND 3441 02:33:17,735 --> 02:33:19,637 WERE TRYING TO USE A MACHINE 3442 02:33:19,637 --> 02:33:21,305 LEARNING MODEL TRAINED ON THE 3443 02:33:21,305 --> 02:33:22,807 ADMINISTRATIVE DATA THE COUNTY 3444 02:33:22,807 --> 02:33:24,275 HAD TO HELP CREATE A RISK 3445 02:33:24,275 --> 02:33:25,276 PREDICTION SYSTEM FOR KIDS WHO 3446 02:33:25,276 --> 02:33:27,011 ARE AT RISK. 3447 02:33:27,011 --> 02:33:28,913 WE ALL KNOW THAT THESE KIND OF 3448 02:33:28,913 --> 02:33:31,182 SYSTEMS CAN BE BIASSED. 3449 02:33:31,182 --> 02:33:33,017 WE ALSO ALL KNOW THAT THE 3450 02:33:33,017 --> 02:33:35,319 CURRENT SYSTEMS THAT EXIST IN 3451 02:33:35,319 --> 02:33:36,454 MANY SOCIAL SERVICE AGENCIES DO 3452 02:33:36,454 --> 02:33:39,056 NOT LIVE UP TO OUR HIGHEST 3453 02:33:39,056 --> 02:33:40,191 IDEALS. 3454 02:33:40,191 --> 02:33:42,126 AND SO THE QUESTION IS, IS THERE 3455 02:33:42,126 --> 02:33:45,629 A WAY WE CAN DO THIS BETTER BY 3456 02:33:45,629 --> 02:33:47,098 TAKING ADVANTAGE OF DATA? 3457 02:33:47,098 --> 02:33:49,734 NOW, THAT IS A VERY HARD 3458 02:33:49,734 --> 02:33:51,569 QUESTION AND THERE'S A LOT OF 3459 02:33:51,569 --> 02:33:53,070 TENSION BETWEEN THOSE TWO THINGS 3460 02:33:53,070 --> 02:33:55,172 BUT ONE THING THAT WE'VE NOTICED 3461 02:33:55,172 --> 02:33:56,674 IS THAT THERE ARE EVEN DEEPER 3462 02:33:56,674 --> 02:33:59,944 SCIENTIFIC QUESTIONS THAT ARE 3463 02:33:59,944 --> 02:34:01,312 NOT ANSWERED BEFORE WE WOULD 3464 02:34:01,312 --> 02:34:02,580 EVEN BEGIN TO DEBATE SOME OF 3465 02:34:02,580 --> 02:34:04,949 THESE POLICY QUESTIONS. 3466 02:34:04,949 --> 02:34:06,484 FOR EXAMPLE, HOW PREDICTABLE ARE 3467 02:34:06,484 --> 02:34:11,255 LIFE TRAJECTORIES FROM THE DATA 3468 02:34:11,255 --> 02:34:13,057 AND IF THEY'RE ACCURATE IT LEADS 3469 02:34:13,057 --> 02:34:15,292 TO ONE SAID OF POLICY 3470 02:34:15,292 --> 02:34:15,693 CONSIDERATIONS. 3471 02:34:15,693 --> 02:34:17,728 IF THE ALGORITHMS ARE NOT VERY 3472 02:34:17,728 --> 02:34:18,896 ACCURATE IT LEADS TO A DIFFERENT 3473 02:34:18,896 --> 02:34:20,398 SET OF POLICY CONSIDERATIONS. 3474 02:34:20,398 --> 02:34:23,968 THERE'S BASIC SCIENCE THAT TO BE 3475 02:34:23,968 --> 02:34:26,270 DONE HERE TO HELP INFORM THESE 3476 02:34:26,270 --> 02:34:27,638 IMPORTANT DEBATES. 3477 02:34:27,638 --> 02:34:29,340 THIS BASIC SCIENCE ALSO HELPS US 3478 02:34:29,340 --> 02:34:29,940 ADVANCE OUR UNDERSTANDING OF 3479 02:34:29,940 --> 02:34:32,343 SOCIETY. 3480 02:34:32,343 --> 02:34:34,712 SO ONE WAY TO THINK ABOUT THE 3481 02:34:34,712 --> 02:34:36,447 CHANGE THAT'S HAPPENING HERE IS 3482 02:34:36,447 --> 02:34:39,650 IF YOU THINK ABOUT A REGRESSION 3483 02:34:39,650 --> 02:34:42,319 MODEL, SO REGRESSION MODEL WE 3484 02:34:42,319 --> 02:34:44,155 ALL KNOW HAS SOME MANY OUTCOMES 3485 02:34:44,155 --> 02:34:46,524 AND BETA HATS, THE WEIGHTS THAT 3486 02:34:46,524 --> 02:34:48,793 APPLY TO THE PREDICTORS. 3487 02:34:48,793 --> 02:34:51,495 SO IF YOU HANG OUT WITH SOCIAL 3488 02:34:51,495 --> 02:34:54,598 SCIENTISTS AND GO TO A TALK IN A 3489 02:34:54,598 --> 02:34:56,467 SOCIAL SCIENCE DEPARTMENT, IT 3490 02:34:56,467 --> 02:34:58,436 WILL VERY MUCH BE FOCUSED ON THE 3491 02:34:58,436 --> 02:34:59,036 BETA HATS. 3492 02:34:59,036 --> 02:35:00,638 SOMEONE WILL HAVE A THEORY AND 3493 02:35:00,638 --> 02:35:03,174 HAVE DATA AND RUN REGRESSION 3494 02:35:03,174 --> 02:35:05,709 MODEL AND THEN THEY'LL FOCUS ON 3495 02:35:05,709 --> 02:35:07,445 INTERPRETING THE BETA HATS. 3496 02:35:07,445 --> 02:35:11,949 HOWEVER, IF YOU HANG OUT WITH 3497 02:35:11,949 --> 02:35:13,484 DATA SCIENTISTS THEY FOCUS ON 3498 02:35:13,484 --> 02:35:15,986 HOW ACCURATELY CAN WE PREDICT 3499 02:35:15,986 --> 02:35:18,022 THE OUTCOMES. 3500 02:35:18,022 --> 02:35:20,391 IF WE HAVE AN ALGORITHM TO 3501 02:35:20,391 --> 02:35:22,760 PREDICT WHICH E-MAIL IS SNAM OR 3502 02:35:22,760 --> 02:35:24,662 NOT SPAM WE FOCUS ON HOW 3503 02:35:24,662 --> 02:35:25,729 ACCURATELY WE CAN MAKE THE 3504 02:35:25,729 --> 02:35:27,231 PREDICTION AND DON'T FOCUS ON 3505 02:35:27,231 --> 02:35:28,165 THE WEIGHTS IN OUR MODEL. 3506 02:35:28,165 --> 02:35:30,768 SO WE HEARD FOR A LONG TIME 3507 02:35:30,768 --> 02:35:32,269 ABOUT THIS TENSION BETWEEN 3508 02:35:32,269 --> 02:35:34,605 PREDICTION AND EXPLANATION OR 3509 02:35:34,605 --> 02:35:35,739 PREDICTION AND UNDERSTANDING AND 3510 02:35:35,739 --> 02:35:37,475 WHAT I WANT TO ARGUE IS I THINK 3511 02:35:37,475 --> 02:35:38,742 WE'RE GOING TO MOVE TO A SETTING 3512 02:35:38,742 --> 02:35:43,414 WHERE WE THINK OF PREDICTION AND 3513 02:35:43,414 --> 02:35:46,083 UNDERSTANDING AS THINGS THAT 3514 02:35:46,083 --> 02:35:48,319 MUTUALLY SUPPORT EACH OTHER. 3515 02:35:48,319 --> 02:35:50,688 IN MEASURE LEARNING IT'S A MOVE 3516 02:35:50,688 --> 02:35:51,689 TOWARDS INTERPRETABLE MACHINE 3517 02:35:51,689 --> 02:35:51,956 LEARNING. 3518 02:35:51,956 --> 02:35:53,958 THIS IS BROADLY SPEAKING 3519 02:35:53,958 --> 02:35:55,559 BRINGING IN A LOT OF THE 3520 02:35:55,559 --> 02:35:58,062 TECHNIQUES THAT SOCIAL 3521 02:35:58,062 --> 02:36:00,364 SCIENTISTS HAVE DEVELOPED FOR 3522 02:36:00,364 --> 02:36:01,732 INTERPRETING NON-LINEAR MODELS 3523 02:36:01,732 --> 02:36:05,736 AND INCREASINGLY WE'LL SEE 3524 02:36:05,736 --> 02:36:08,672 SOCIAL SCIENCES FOCUS ON 3525 02:36:08,672 --> 02:36:11,342 PREDICTION NOT AS A THING IN AND 3526 02:36:11,342 --> 02:36:15,079 OF ITSELF BUT AS A WAY TO BUILD 3527 02:36:15,079 --> 02:36:15,779 UNDERSTANDING AND IN THE WORK 3528 02:36:15,779 --> 02:36:18,349 THAT FOLLOWS I'LL TRY TO GIVE AN 3529 02:36:18,349 --> 02:36:20,384 EXAMPLE WHERE WE'LL SEE WHY IN 3530 02:36:20,384 --> 02:36:23,954 THE SERVICE OF BETA HAT OR 3531 02:36:23,954 --> 02:36:25,489 PREDICTION IN THE SERVICE OF 3532 02:36:25,489 --> 02:36:27,091 UNDERSTANDING. 3533 02:36:27,091 --> 02:36:29,894 THIS IS A PAPER THAT I WORKED ON 3534 02:36:29,894 --> 02:36:32,463 WITH MY REMEMBER 111 MANY 3535 02:36:32,463 --> 02:36:33,831 CLOSEST FRIENDS. 3536 02:36:33,831 --> 02:36:35,266 THE PREVIOUS SPEAKER MENTIONED 3537 02:36:35,266 --> 02:36:36,800 TEAM SCIENCE AND THIS IS A 3538 02:36:36,800 --> 02:36:39,069 BEAUTIFUL EXAMPLE OF WHAT WE CAN 3539 02:36:39,069 --> 02:36:40,671 ALL DO TOGETHER THAT NONE OF US 3540 02:36:40,671 --> 02:36:41,672 CAN DO INDIVIDUALLY. 3541 02:36:41,672 --> 02:36:45,743 THAT'S THE KIND OF SCIENCE WE'RE 3542 02:36:45,743 --> 02:36:46,143 EXCITED ABOUT. 3543 02:36:46,143 --> 02:36:49,213 WE STARTED WITH THIS AMAZING 3544 02:36:49,213 --> 02:36:51,916 DATA SET THAT HAD BEEN COLLECTED 3545 02:36:51,916 --> 02:36:55,219 BY MY COLLEAGUES AND SEVERAL 3546 02:36:55,219 --> 02:36:56,320 OTHER P.I.s. 3547 02:36:56,320 --> 02:36:57,988 SINCE AROUND THE YEAR 2000 THIS 3548 02:36:57,988 --> 02:37:04,662 STUDY WAS FORMALLY CALLED THE 3549 02:37:04,662 --> 02:37:06,030 FUTURE OF FAMILIES AND CHILD 3550 02:37:06,030 --> 02:37:07,631 WELL BEING STUDY AND WE'RE 3551 02:37:07,631 --> 02:37:08,832 FOLLOWING NOT JUST THE ORIGINAL 3552 02:37:08,832 --> 02:37:11,268 CHILDREN BUT THE CHILDREN OF THE 3553 02:37:11,268 --> 02:37:13,170 ORIGINAL CHILDREN AS THE STUDY 3554 02:37:13,170 --> 02:37:14,638 HAS MOVED TO A 3555 02:37:14,638 --> 02:37:15,873 MULTI-GENERATIONAL STUDY. 3556 02:37:15,873 --> 02:37:17,241 KATHY AND GENE ARE CURRENTLY THE 3557 02:37:17,241 --> 02:37:22,580 P.I.s OF THIS AMAZING PROJECT. 3558 02:37:22,580 --> 02:37:24,715 SO WHAT IS THIS LONGITUDINAL 3559 02:37:24,715 --> 02:37:25,616 DATA SET? 3560 02:37:25,616 --> 02:37:27,918 THEY SAMPLED THOUSANDS OF 3561 02:37:27,918 --> 02:37:29,620 CHILDREN BORN IN 20 U.S. CITIES 3562 02:37:29,620 --> 02:37:32,256 WITH AN OVERSAMPLE OF 3563 02:37:32,256 --> 02:37:33,757 NON-MARITAL BIRTHS. 3564 02:37:33,757 --> 02:37:37,928 ONE ORIGINAL GOAL WAS TO 3565 02:37:37,928 --> 02:37:41,198 UNDERSTAND OUTCOMES FOR CHILDREN 3566 02:37:41,198 --> 02:37:43,267 WHO ARE MARRIED AND HOW THEY 3567 02:37:43,267 --> 02:37:44,235 DIFFERENT FROM THOSE WHO ARE NOT 3568 02:37:44,235 --> 02:37:47,271 MARRIED AND THE FAMILIES WERE 3569 02:37:47,271 --> 02:37:48,706 FOLLOWED SINCE BIRTH AND DATA 3570 02:37:48,706 --> 02:37:51,108 HAS BEEN USED IN MORE THAN 1,000 3571 02:37:51,108 --> 02:37:52,142 PUBLISHED PAPER. 3572 02:37:52,142 --> 02:37:54,178 IT'S AN INCREDIBLY WIDELY USED 3573 02:37:54,178 --> 02:37:56,981 AND VALUABLE DATA SOURCE. 3574 02:37:56,981 --> 02:37:59,383 SO WHEN I GOT INVOLVED THIS IS 3575 02:37:59,383 --> 02:38:05,256 THE WAY THE DATA SET WAS 3576 02:38:05,256 --> 02:38:05,823 STRUCTURED. 3577 02:38:09,793 --> 02:38:12,263 SO, DATA COLLECTED WHEN KIDS 3578 02:38:12,263 --> 02:38:14,865 WERE BORN AND 1, 3, 5 AND 9 AND 3579 02:38:14,865 --> 02:38:17,301 AS THE KID GETS OLDER MORE AND 3580 02:38:17,301 --> 02:38:18,168 MORE INFORMATION IS BEING 3581 02:38:18,168 --> 02:38:19,870 COLLECTED AROUND THE KID AND 3582 02:38:19,870 --> 02:38:20,504 ABOUT THE ENVIRONMENT AROUND THE 3583 02:38:20,504 --> 02:38:27,077 KID. 3584 02:38:27,077 --> 02:38:32,750 WE TALKED ABOUT THE SOCIAL 3585 02:38:32,750 --> 02:38:34,952 DETERMINATES AROUND UNDER THE 3586 02:38:34,952 --> 02:38:37,621 CIRCLES IS THE INFORMATION AND 3587 02:38:37,621 --> 02:38:41,191 ONE SAYS CORE MOTHER SURVEY, 3588 02:38:41,191 --> 02:38:41,725 BIRTH. 3589 02:38:41,725 --> 02:38:44,094 THIS HAS ABOUT 10 MODULES. 3590 02:38:44,094 --> 02:38:49,633 EACH MODULE HAS ABOUT 10 3591 02:38:49,633 --> 02:38:51,502 QUESTI 3592 02:38:51,502 --> 02:38:54,805 QUESTIONS AND LOOK AT FATHERHOOD 3593 02:38:54,805 --> 02:38:57,708 AND MARRIAGE ATTITUDES AND SO ON 3594 02:38:57,708 --> 02:38:59,977 AND CONTRAST THIS TO THE BIG 3595 02:38:59,977 --> 02:39:01,879 DATA THAT WE OFTEN WORK WITH AS 3596 02:39:01,879 --> 02:39:03,380 RESEARCHERS. 3597 02:39:03,380 --> 02:39:06,617 HERE WE ARE WORKING NOT WITH THE 3598 02:39:06,617 --> 02:39:09,019 DIGITAL EXHAUST THAT THESE 3599 02:39:09,019 --> 02:39:11,955 PEOPLE ARE LEAVING BEHIND ON X, 3600 02:39:11,955 --> 02:39:13,624 TWITTER OR FACEBOOK. 3601 02:39:13,624 --> 02:39:17,161 WE'RE WORKING WITH QUESTIONS 3602 02:39:17,161 --> 02:39:19,530 THAT ASKED BY RESEARCHERS FOR 3603 02:39:19,530 --> 02:39:21,065 THE PURPOSE OF RESEARCH. 3604 02:39:21,065 --> 02:39:22,733 THESE QUESTIONS ARE DRIVEN BY 3605 02:39:22,733 --> 02:39:23,400 IMPORTANT THEORIES IN THE FIELD 3606 02:39:23,400 --> 02:39:26,603 AND THAT MAKES THIS KIND OF 3607 02:39:26,603 --> 02:39:27,671 RESEARCHER COLLECTED DATA 3608 02:39:27,671 --> 02:39:28,372 INCREDIBLY VALUABLE. 3609 02:39:28,372 --> 02:39:30,407 SO THIS IS WHAT WAS COLLECTED 3610 02:39:30,407 --> 02:39:32,009 FROM THE MOTHER AT BIRTH AND 3611 02:39:32,009 --> 02:39:35,979 THEN THIS IS THE FULL SET OF 3612 02:39:35,979 --> 02:39:36,814 QUESTIONS COLLECTED BETWEEN 3613 02:39:36,814 --> 02:39:38,382 BIRTH AND YEAR 9. 3614 02:39:38,382 --> 02:39:41,719 IT'S AN INCREDIBLY RICH DATA 3615 02:39:41,719 --> 02:39:41,885 SET. 3616 02:39:41,885 --> 02:39:42,519 OKAY. 3617 02:39:42,519 --> 02:39:44,388 BY THE TIME I GOT INVOLVED THE 3618 02:39:44,388 --> 02:39:46,323 DATA FROM BIRTH TO YEAR 9 WAS 3619 02:39:46,323 --> 02:39:48,058 AVAILABLE TO RESEARCHERS AND HAD 3620 02:39:48,058 --> 02:39:50,094 BEEN WIDELY USED IN MANY 3621 02:39:50,094 --> 02:39:51,295 IMPORTANT RESEARCH PAPERS. 3622 02:39:51,295 --> 02:39:53,297 THE DATA FROM WHEN THE KIDS WERE 3623 02:39:53,297 --> 02:39:55,699 15 YEARS OLD HAD BEEN COLLECTED 3624 02:39:55,699 --> 02:39:58,635 BUT WAS NOT YET WIDELY 3625 02:39:58,635 --> 02:39:58,902 AVAILABLE. 3626 02:39:58,902 --> 02:40:00,637 SO THE FUTURE OF FAMILIES TEAM 3627 02:40:00,637 --> 02:40:01,538 WAS CLEANING THE DATA, 3628 02:40:01,538 --> 02:40:04,641 DOCUMENTING IT AND PREPARING IT 3629 02:40:04,641 --> 02:40:05,542 TO BE RELEASED. 3630 02:40:05,542 --> 02:40:08,011 THIS IS AN AMAZING, AMAZING 3631 02:40:08,011 --> 02:40:09,012 RESEARCH OPPORTUNITY. 3632 02:40:09,012 --> 02:40:10,180 IT'S A VERY SPECIAL MOMENT WHEN 3633 02:40:10,180 --> 02:40:12,850 YOU HAVE SOME DATA THAT HAS BEEN 3634 02:40:12,850 --> 02:40:15,486 COLLECTED BUT NOT YET WIDELY 3635 02:40:15,486 --> 02:40:16,453 AVAILABLE. 3636 02:40:16,453 --> 02:40:18,555 I WANT TO EMPHASIZE THIS MOMENT 3637 02:40:18,555 --> 02:40:20,891 EXISTS EVERY LONGITUDINAL STUDY 3638 02:40:20,891 --> 02:40:24,928 THAT HAS EVER BEEN DONE AND 3639 02:40:24,928 --> 02:40:26,630 EXISTS INSIDE EVERY LONGITUDINAL 3640 02:40:26,630 --> 02:40:29,633 STUDY THAT HAS BEEN DONE AND AN 3641 02:40:29,633 --> 02:40:30,601 OPPORTUNITY PEOPLE HADN'T TAKEN 3642 02:40:30,601 --> 02:40:31,468 ADVANTAGE OF YET. 3643 02:40:31,468 --> 02:40:33,303 IF YOU SHOWED A PICTURE LIKE 3644 02:40:33,303 --> 02:40:36,807 THIS TO A DATA SCIENTIST, THE 3645 02:40:36,807 --> 02:40:39,376 FIRST THING THEY WOULD THINK IS 3646 02:40:39,376 --> 02:40:42,413 OR ONE OF THE FIRST THING THEY 3647 02:40:42,413 --> 02:40:43,981 WOULD THINK IS USING THE COMMON 3648 02:40:43,981 --> 02:40:44,848 TASK METHOD. 3649 02:40:44,848 --> 02:40:47,050 LET ME EXPLAIN WHAT THAT IS. 3650 02:40:47,050 --> 02:40:49,319 THIS IS A WAY A DATA SCIENTIST 3651 02:40:49,319 --> 02:40:51,989 MAY LOOK AT THE FUTURE OF 3652 02:40:51,989 --> 02:40:52,356 FAMILIES DATA. 3653 02:40:52,356 --> 02:40:54,358 THERE'S DATA ON THE PROJECT ON 3654 02:40:54,358 --> 02:40:56,527 ABOUT 4,000 FAMILIES AND WHEN WE 3655 02:40:56,527 --> 02:40:57,995 CONNECT UP ALL THE DATA THAT HAS 3656 02:40:57,995 --> 02:40:59,363 BEEN COLLECTED ABOUT THE 3657 02:40:59,363 --> 02:41:00,664 FAMILIES FROM THE TIME THE KID 3658 02:41:00,664 --> 02:41:03,434 WAS BORN TO THE TIME THE KID WAS 3659 02:41:03,434 --> 02:41:07,004 9 YEARS OLD COMES UP TO 13,000 3660 02:41:07,004 --> 02:41:07,271 VARIABLES. 3661 02:41:07,271 --> 02:41:09,573 IT'S AN ENORMOUS AMOUNT OF 3662 02:41:09,573 --> 02:41:09,873 INFORMATION. 3663 02:41:09,873 --> 02:41:13,177 A VERY SMALL NUMBER OF THE 3664 02:41:13,177 --> 02:41:15,245 VARIABLES ARE ROUTINELY USED IN 3665 02:41:15,245 --> 02:41:15,512 RESEARCH. 3666 02:41:15,512 --> 02:41:17,714 I WAS SHOCKED TO SEE HOW MANY 3667 02:41:17,714 --> 02:41:20,117 THINGS HAD BEEN COLLECTED. 3668 02:41:20,117 --> 02:41:21,652 YOU'LL NOTICE THE DATA IS WIDER 3669 02:41:21,652 --> 02:41:22,986 THAN IT IS TALL. 3670 02:41:22,986 --> 02:41:24,455 THIS IS SOMETHING WE DON'T OFTEN 3671 02:41:24,455 --> 02:41:25,722 WORK WITH IN THE SOCIAL 3672 02:41:25,722 --> 02:41:25,989 SCIENCES. 3673 02:41:25,989 --> 02:41:28,692 COMES UP MORE IN GENETIC 3674 02:41:28,692 --> 02:41:29,259 RESEARCH, FOR EXAMPLE. 3675 02:41:29,259 --> 02:41:30,494 COMES UP OFTEN IN MACHINE 3676 02:41:30,494 --> 02:41:32,429 LEARNING AND THERE'S A NUMBER OF 3677 02:41:32,429 --> 02:41:33,163 TECHNIQUES THAT ARE DESIGN TO 3678 02:41:33,163 --> 02:41:36,266 WORK WITH THE DATA THAT IS WIDE 3679 02:41:36,266 --> 02:41:37,734 AND SHORT THAT WE THOUGHT WERE 3680 02:41:37,734 --> 02:41:40,637 VERY EXCITING TO USE ON THIS 3681 02:41:40,637 --> 02:41:41,038 AMAZING DATA SET. 3682 02:41:41,038 --> 02:41:42,272 SO WHAT WE DID IS THEN PICKED 3683 02:41:42,272 --> 02:41:43,807 SIX OUTCOMES THAT WE WANTED 3684 02:41:43,807 --> 02:41:45,609 PEOPLE TO PREDICT. 3685 02:41:45,609 --> 02:41:46,910 ONE OF THOSE IS THE GRADES OF 3686 02:41:46,910 --> 02:41:49,613 THE KIDS IN SCHOOL WHEN THEY'RE 3687 02:41:49,613 --> 02:41:49,780 15. 3688 02:41:49,780 --> 02:41:52,082 THEN RESEARCHERS COULD APPLY TO 3689 02:41:52,082 --> 02:41:54,351 GET THIS BACKGROUND DATA AND THE 3690 02:41:54,351 --> 02:41:56,553 OUTCOME DATA AND THEN COULD 3691 02:41:56,553 --> 02:41:57,721 BUILD A MODEL USING ANY 3692 02:41:57,721 --> 02:41:59,122 TECHNIQUE THEY WANT. 3693 02:41:59,122 --> 02:42:01,358 THEY COULD USE ANY MACHINE 3694 02:42:01,358 --> 02:42:02,926 LEARNING TECHNIQUE, THEY COULD 3695 02:42:02,926 --> 02:42:05,262 USE ANY SOCIAL SCIENCE THEORY, 3696 02:42:05,262 --> 02:42:06,163 THEY ARE COULD USE ANY 3697 02:42:06,163 --> 02:42:08,031 COMBINATION MUCH ANY OF THESE 3698 02:42:08,031 --> 02:42:09,733 THINGS AND THE GOAL WAS TO 3699 02:42:09,733 --> 02:42:12,002 PREDICT THE OUTCOMES FOR THE 3700 02:42:12,002 --> 02:42:13,670 KIDS WHOSE OUTCOMES THEY HAD NOT 3701 02:42:13,670 --> 02:42:13,871 SEEN. 3702 02:42:13,871 --> 02:42:19,543 SO HERE YOU'LL SEE THE TWO 3703 02:42:19,543 --> 02:42:19,743 BOXES. 3704 02:42:19,743 --> 02:42:22,579 THE LEADER BOARD AND HOLDOUT AND 3705 02:42:22,579 --> 02:42:23,981 THE QUESTION IS HOW WELL CAN 3706 02:42:23,981 --> 02:42:30,487 PEOPLE PREDICT THE UNSEEN DATA? 3707 02:42:30,487 --> 02:42:31,421 IT WAS AVAILABLE DURING THE 3708 02:42:31,421 --> 02:42:32,656 CHALLENGE TO QUERY. 3709 02:42:32,656 --> 02:42:35,359 WE'RE NOW GOING TO FOCUS ON THE 3710 02:42:35,359 --> 02:42:36,426 HOLDOUT DATA. 3711 02:42:36,426 --> 02:42:42,032 THIS IS DATA KEPT HIDDEN UNTIL 3712 02:42:42,032 --> 02:42:48,372 THE END AND COMPARE IT TO THE 3713 02:42:48,372 --> 02:42:50,541 HELD OUT DATA AN ONE THING ABOUT 3714 02:42:50,541 --> 02:42:53,477 THE RESEARCH DESIGN, THIS IS A 3715 02:42:53,477 --> 02:42:55,078 REALLY POWERFUL DESIGN THAT HAS 3716 02:42:55,078 --> 02:42:56,680 BEEN DEVELOPED BY COMPUTER 3717 02:42:56,680 --> 02:42:56,980 SCIENTISTS. 3718 02:42:56,980 --> 02:42:59,116 JUST LIKE A RANDOMIZED CONTROL 3719 02:42:59,116 --> 02:43:01,218 TRIAL IS A GOOD DESIGN FOR 3720 02:43:01,218 --> 02:43:02,753 MEASURING CAUSAL EFFECTS, THE 3721 02:43:02,753 --> 02:43:05,722 COMMON TASK METHOD IS A GOOD 3722 02:43:05,722 --> 02:43:09,159 DESIGN FOR PRODUCING CREDIBLE 3723 02:43:09,159 --> 02:43:10,561 ESTIMATES ABOUT PREDICTABILITY. 3724 02:43:10,561 --> 02:43:11,662 IF WE HAVE HUNDREDS OF 3725 02:43:11,662 --> 02:43:13,130 RESEARCHERS FROM AROUND THE 3726 02:43:13,130 --> 02:43:16,633 WORLD ATTEMPTING TO DO THIS TASK 3727 02:43:16,633 --> 02:43:19,169 AND SOMEONE ENDS UP DOING WELL 3728 02:43:19,169 --> 02:43:22,105 THAT CANNOT BE EXPLAINED AWAY 3729 02:43:22,105 --> 02:43:23,707 BASED ON RESEARCHER DEGREES OF 3730 02:43:23,707 --> 02:43:25,909 FREEDOM OR P HACKING OR OTHER 3731 02:43:25,909 --> 02:43:27,544 KINDS OF THINGS LIKE THAT. 3732 02:43:27,544 --> 02:43:28,946 CHANGING THE METRIC. 3733 02:43:28,946 --> 02:43:32,516 ALL THESE THINGS ARE PRE 3734 02:43:32,516 --> 02:43:33,750 SPECIFIED BY US TO BE CONFIDENT 3735 02:43:33,750 --> 02:43:36,720 RESEARCHERS ARE ABLE TO DO THIS 3736 02:43:36,720 --> 02:43:37,454 TASK. 3737 02:43:37,454 --> 02:43:39,156 ALTERNATIVELY, IF NO ONE IS ABLE 3738 02:43:39,156 --> 02:43:41,358 TO DO THIS TASK WELL THAT'S A 3739 02:43:41,358 --> 02:43:42,159 SIGN AS THE TRULY DIFFICULT. 3740 02:43:42,159 --> 02:43:44,194 WE CANNOT ATTRIBUTE THE 3741 02:43:44,194 --> 02:43:45,896 INABILITY TO ACHIEVE THE TASK TO 3742 02:43:45,896 --> 02:43:47,464 THE FAILURE OF ANY ONE 3743 02:43:47,464 --> 02:43:48,198 PARTICULAR RESEARCH GROUP. 3744 02:43:48,198 --> 02:43:49,933 FOR EXAMPLE, IF I TRIED TO 3745 02:43:49,933 --> 02:43:52,235 PREDICT THE GRADES OF THE KIDS 3746 02:43:52,235 --> 02:43:53,670 AT AGE 15 AND WASN'T VERY 3747 02:43:53,670 --> 02:43:55,973 SUCCESSFUL YOU MIGHT SAY THAT'S 3748 02:43:55,973 --> 02:43:57,708 BECAUSE MATT DOESN'T KNOW ABOUT 3749 02:43:57,708 --> 02:44:00,010 RANDOM FOREST OR ABOUT THE 3750 02:44:00,010 --> 02:44:02,980 NEWEST TRANSFORMER MODELS OR 3751 02:44:02,980 --> 02:44:03,914 DOESN'T KNOW ENOUGH ABOUT 3752 02:44:03,914 --> 02:44:06,049 EDUCATION FOR A MILLION REASONS 3753 02:44:06,049 --> 02:44:07,618 AND IF HUNDREDS OF RESEARCHERS 3754 02:44:07,618 --> 02:44:10,520 TRY AND NO ONE IS ABLE TO DO IT, 3755 02:44:10,520 --> 02:44:12,022 IT'S A STRONG INDICATION IT'S A 3756 02:44:12,022 --> 02:44:13,190 HARD TASK. 3757 02:44:13,190 --> 02:44:14,891 AND SO THIS IS WHAT WE DID. 3758 02:44:14,891 --> 02:44:16,460 WE HAD HUNDREDS OF RESEARCHERS 3759 02:44:16,460 --> 02:44:19,262 AROUND THE WORLD PARTICIPATE IN 3760 02:44:19,262 --> 02:44:22,499 THE SOCIAL SCIENTISTS, 3761 02:44:22,499 --> 02:44:24,134 UNDERGRADUATES, GARAGE AT 3762 02:44:24,134 --> 02:44:27,471 STUDENTS, FACULTY, SCIENTISTS IN 3763 02:44:27,471 --> 02:44:28,805 INDUSTRY. 3764 02:44:28,805 --> 02:44:31,375 HERE'S THE MAIN QUESTION USING A 3765 02:44:31,375 --> 02:44:33,210 DATA SET COLLECTED SINCE BIRTH 3766 02:44:33,210 --> 02:44:35,212 AND MODERN MACHINE LEARNING 3767 02:44:35,212 --> 02:44:40,651 METHODS ONLY FOCUSSED ON 3768 02:44:40,651 --> 02:44:41,518 OPTIMIZING PREDICTIVE ACCURACY 3769 02:44:41,518 --> 02:44:45,622 AND THE RESULTS ON THE METRIC OF 3770 02:44:45,622 --> 02:44:47,924 R SQUARED IN THE HOLDOUT SET AND 3771 02:44:47,924 --> 02:44:51,261 I WANT TO SHOW THE METRIC 3772 02:44:51,261 --> 02:44:52,396 BECAUSE OFTEN WHEN WE ASSESS 3773 02:44:52,396 --> 02:44:54,364 RESULTS FROM PREDICTIVE MODELS 3774 02:44:54,364 --> 02:44:55,365 RESEARCHERS ARE NOT OFTEN VERY 3775 02:44:55,365 --> 02:44:57,034 CLEAR ABOUT WHAT THE METRIC IS 3776 02:44:57,034 --> 02:45:00,003 MAKES IT HARD FOR THEM TO BE 3777 02:45:00,003 --> 02:45:00,303 INTERPRETED. 3778 02:45:00,303 --> 02:45:04,074 SO HERE THE METRIC GOES FROM 3779 02:45:04,074 --> 02:45:05,876 ZERO WHICH IS THIS MODEL IS NO 3780 02:45:05,876 --> 02:45:08,412 MORE ACCURATE THAN PREDICTING 3781 02:45:08,412 --> 02:45:10,147 THE MEAN OF THE TRAINING DATA TO 3782 02:45:10,147 --> 02:45:13,617 ONE WHICH IS THIS MODEL IS 3783 02:45:13,617 --> 02:45:14,084 PERFECTLY ACCURATE. 3784 02:45:14,084 --> 02:45:15,886 WE HAVE HUNDREDS OF PEOPLE 3785 02:45:15,886 --> 02:45:19,589 PARTICIPATE IN THIS TASK. 3786 02:45:19,589 --> 02:45:21,324 WE HAD SIX OUTCOMES. 3787 02:45:21,324 --> 02:45:23,727 SOME PROPERTY OF THE CHILD AND 3788 02:45:23,727 --> 02:45:24,795 SOME OF THE HOUSEHOLD AND SOME 3789 02:45:24,795 --> 02:45:25,729 PROPERTY OF THE PRIMARY 3790 02:45:25,729 --> 02:45:36,239 CAREGIVER USUALLY THE MOTHER. 3791 02:45:36,973 --> 02:45:41,278 WITH -- WE LOOKED TO SEE THE 3792 02:45:41,278 --> 02:45:43,246 OUTCOMES OF THE BEST MODELS. 3793 02:45:43,246 --> 02:45:45,716 THE R SQUARED VALUES FROM GPA 3794 02:45:45,716 --> 02:45:47,617 AROUND .2 AND THE OUTCOMES FOR 3795 02:45:47,617 --> 02:45:49,186 THE OTHER VALUES ARE CLOSE TO 3796 02:45:49,186 --> 02:45:49,453 ZERO. 3797 02:45:49,453 --> 02:45:52,489 I WANT TO EMPHASIZE THIS IS THE 3798 02:45:52,489 --> 02:45:54,191 BEST OF 160 TEAM SUBMISSIONS. 3799 02:45:54,191 --> 02:45:55,358 THIS IS NOT THE AVERAGE. 3800 02:45:55,358 --> 02:45:56,359 THIS IS THE BEST. 3801 02:45:56,359 --> 02:45:57,427 SO THIS IS ONE WAY YOU CAN LOOK 3802 02:45:57,427 --> 02:45:59,429 AT THE RESULTS. 3803 02:45:59,429 --> 02:46:00,430 HERE'S ANOTHER WAY YOU CAN LOOK 3804 02:46:00,430 --> 02:46:01,364 AT THE RESULTS WHICH I THINK IS 3805 02:46:01,364 --> 02:46:07,437 THE BETTER WAY. 3806 02:46:07,437 --> 02:46:10,173 THIS EMPHASIZES IT CAN GO FROM 3807 02:46:10,173 --> 02:46:11,975 ZERO TO 1 AND HIGHLIGHTS 3808 02:46:11,975 --> 02:46:13,543 EVERYTHING THE AMAZING RESEARCH 3809 02:46:13,543 --> 02:46:15,946 TEAM IN THE FUTURE OF FAMILIES 3810 02:46:15,946 --> 02:46:17,714 HAS THOUGHT ABOUT PLUS STATE OF 3811 02:46:17,714 --> 02:46:18,915 THE ART MACHINE LEARNING GIVES 3812 02:46:18,915 --> 02:46:22,786 YOU WHAT IS IN BLUE BUT THE 3813 02:46:22,786 --> 02:46:25,555 DOMINANT PATTERN HERE IS WHAT IS 3814 02:46:25,555 --> 02:46:27,791 NOT IN BLUE THE VAST WHITE 3815 02:46:27,791 --> 02:46:28,191 SPACE. 3816 02:46:28,191 --> 02:46:30,327 THERE'S AN ENORMOUS AMOUNT 3817 02:46:30,327 --> 02:46:31,294 HAPPENING IN THE LIVES OF THESE 3818 02:46:31,294 --> 02:46:33,263 KIDS AND THE FAMILIES WE DO NOT 3819 02:46:33,263 --> 02:46:40,637 YET UNDERSTAND. 3820 02:46:40,637 --> 02:46:43,440 WHEN YOU SEE A RESULT FROM A 3821 02:46:43,440 --> 02:46:45,308 PREDICTIVE MODEL YOU NEED TO ASK 3822 02:46:45,308 --> 02:46:49,479 IF IT'S BETTER THAN A BENCHMARK 3823 02:46:49,479 --> 02:46:49,679 MODEL. 3824 02:46:49,679 --> 02:46:51,815 I MAY SAY I HAVE A SYSTEM FOR 3825 02:46:51,815 --> 02:46:52,449 PREDICTING THE WEATHER IN LOS 3826 02:46:52,449 --> 02:46:54,951 ANGELES AND PREDICT IT WILL BE 3827 02:46:54,951 --> 02:46:56,319 SUNNY AND YOU'D SAY THAT'S NOT 3828 02:46:56,319 --> 02:46:59,256 THAT IMPRESSIVE BECAUSE IT'S 3829 02:46:59,256 --> 02:47:02,225 PRETTY MUCH ALWAYS SUNNY IN LOS 3830 02:47:02,225 --> 02:47:02,459 ANGELES. 3831 02:47:02,459 --> 02:47:03,894 WE WANT TO COMPARE THE OUTCOME 3832 02:47:03,894 --> 02:47:09,733 OF THE LEARNING PREDICTIONS TO A 3833 02:47:09,733 --> 02:47:12,435 SIMPLER MODEL. 3834 02:47:12,435 --> 02:47:17,908 WE WORKED WITH A DOMAIN EXPERT 3835 02:47:17,908 --> 02:47:19,609 AND ASKED THEM WHAT WOULD BE 3836 02:47:19,609 --> 02:47:21,478 FOUR IMPORTANT VARIABLES AN PUT 3837 02:47:21,478 --> 02:47:26,683 IT INTO A REGRESSION MODEL AND 3838 02:47:26,683 --> 02:47:29,452 THIS IS WHAT WE GOT. 3839 02:47:29,452 --> 02:47:36,860 IF YOUR INTUITION IS IT WILL 3840 02:47:36,860 --> 02:47:41,731 MAKE A SMALL IMPROVEMENT THAT'S 3841 02:47:41,731 --> 02:47:43,700 CONSISTENT WITH WHAT WE FOUND. 3842 02:47:43,700 --> 02:47:45,402 MANY OF US DON'T THINK OF THE R 3843 02:47:45,402 --> 02:47:47,737 SQUARED RESULTS AND QUICKLY WHAT 3844 02:47:47,737 --> 02:47:48,538 THIS LOOKS LIKE. 3845 02:47:48,538 --> 02:47:49,739 IT'S A SQUATTER PLOT FOR ONE OF 3846 02:47:49,739 --> 02:47:51,074 THE OUTCOMES. 3847 02:47:51,074 --> 02:47:57,347 THIS IS THE GRADES OF THE KID IN 3848 02:47:57,347 --> 02:47:58,782 SCHOOL THE X AXIS IS THE TRUTH 3849 02:47:58,782 --> 02:48:00,984 AND Y IS THE PREDICTION AND IF 3850 02:48:00,984 --> 02:48:03,787 EVERYTHING WAS WORKING PERFECTLY 3851 02:48:03,787 --> 02:48:09,259 IT WOULD FALL ALONG THE 45 3852 02:48:09,259 --> 02:48:16,900 INTERESTING LINE. 3853 02:48:16,900 --> 02:48:19,502 A BETTER INTUITION IS THE MEAN 3854 02:48:19,502 --> 02:48:21,938 OF THE TRAINING DATA. 3855 02:48:21,938 --> 02:48:24,741 THE GPA IS 2.87. 3856 02:48:24,741 --> 02:48:25,642 FOR THE BEST MODEL IT'S 3857 02:48:25,642 --> 02:48:27,477 BASICALLY PREDICTING THE MEAN OF 3858 02:48:27,477 --> 02:48:32,616 THE TRAINING DATA WITH A LITTLE 3859 02:48:32,616 --> 02:48:36,019 BIT OF SIGNAL NOTE THE TRUTH 3860 02:48:36,019 --> 02:48:37,587 WITH NOISE AND HERE'S THE BEST 3861 02:48:37,587 --> 02:48:38,521 SUBMISSION ON THE RIGHT SIDE. 3862 02:48:38,521 --> 02:48:43,660 ON THE LEFT SIDE IS THE 3863 02:48:43,660 --> 02:48:44,861 BENCHMARK FOR THE MODEL AND THIS 3864 02:48:44,861 --> 02:48:47,530 IS WHAT WE SEE ACROSS THE SIX 3865 02:48:47,530 --> 02:48:49,099 OUTCOMES. 3866 02:48:49,099 --> 02:48:52,269 TWO COMMON PATTERNS THE BEST 3867 02:48:52,269 --> 02:48:57,407 PREDICT IS CLOSE TO THE MEAN OF 3868 02:48:57,407 --> 02:48:59,309 THE TRAINING DATA AND THE BEST 3869 02:48:59,309 --> 02:49:01,711 SUBMISSION HAS 13,000 VARIABLES 3870 02:49:01,711 --> 02:49:07,617 IN STATE OF THE ART AND A LINEAR 3871 02:49:07,617 --> 02:49:12,122 REGRESSION MODEL. 3872 02:49:12,122 --> 02:49:22,432 WHAT IS GOING ON? 3873 02:49:25,468 --> 02:49:28,238 WE SPECULATED THERE'S STUFF 3874 02:49:28,238 --> 02:49:29,606 CALLED DARK MATTER. 3875 02:49:29,606 --> 02:49:31,574 IN ASTRONOMY DARK MATTER IS 3876 02:49:31,574 --> 02:49:33,176 STUFF WE KNOW IS OUT THERE BUT 3877 02:49:33,176 --> 02:49:34,010 DON'T QUITE KNOW WHAT IT IS. 3878 02:49:34,010 --> 02:49:36,913 WE WANTED TO GO AND FIND THE 3879 02:49:36,913 --> 02:49:37,714 DARK MATTER IN THE LIVES OF 3880 02:49:37,714 --> 02:49:39,082 THESE FAMILIES. 3881 02:49:39,082 --> 02:49:41,117 WE WANTED TO FIND WHAT IS IT 3882 02:49:41,117 --> 02:49:42,452 THAT'S ALLOWING SOME OF THE KIDS 3883 02:49:42,452 --> 02:49:45,622 TO DO BETTER THAN EXPECTED. 3884 02:49:45,622 --> 02:49:46,823 GIVEN THE BEST AVAILABLE 3885 02:49:46,823 --> 02:49:48,058 MODELLING AND DATA WE HAVE. 3886 02:49:48,058 --> 02:49:49,326 WHAT'S CAUSING SOME OF THESE 3887 02:49:49,326 --> 02:49:52,362 KIDS TO STRUGGLE UNEXPECTEDLY. 3888 02:49:52,362 --> 02:49:56,599 SO THAT LED US TO NOT USING 3889 02:49:56,599 --> 02:49:57,467 ANOTHER MACHINE LEARNING 3890 02:49:57,467 --> 02:49:58,201 TECHNIQUE. 3891 02:49:58,201 --> 02:50:00,770 WE DON'T KNOW ONE GOOD FOR 3892 02:50:00,770 --> 02:50:02,806 FINDING IMPORTANT AND UNMEASURED 3893 02:50:02,806 --> 02:50:05,608 VARIABLES BUT AS SOCIOLOGISTS WE 3894 02:50:05,608 --> 02:50:07,210 HAVE A TOOL CALLED GOING OUT AND 3895 02:50:07,210 --> 02:50:08,178 TALKING TO PEOPLE. 3896 02:50:08,178 --> 02:50:10,513 WE DID IN DEPTH QUALITATIVE 3897 02:50:10,513 --> 02:50:12,115 INTERVIEWS WITH THE PARTICIPANTS 3898 02:50:12,115 --> 02:50:14,250 IN THE FUTURE OF FAMILIES STUDY. 3899 02:50:14,250 --> 02:50:16,720 SO WE USED THIS PREDICTION 3900 02:50:16,720 --> 02:50:19,055 CRITICALLY TO HELP US DO THE 3901 02:50:19,055 --> 02:50:19,522 SAMPLING. 3902 02:50:19,522 --> 02:50:21,725 WHEN WE DO SAMPLING FOR 3903 02:50:21,725 --> 02:50:24,995 QUALITATIVE STUDY IT MAY BE AD 3904 02:50:24,995 --> 02:50:27,097 HOC SAMPLING OR RANDOM SAMPLING. 3905 02:50:27,097 --> 02:50:30,033 WE WERE SEARCHING FOR THE DARK 3906 02:50:30,033 --> 02:50:32,769 MATTER AND SAMPLED KIDS WITH 3907 02:50:32,769 --> 02:50:33,937 POSITIVE RESIDUALS AND LIKELY 3908 02:50:33,937 --> 02:50:35,905 HAVE THE GOOD DARK MATTER AND 3909 02:50:35,905 --> 02:50:38,641 KIDS WHO HAD BIG NEGATIVE 3910 02:50:38,641 --> 02:50:40,276 RESIDUALS MOSTLY HAVE THE BAD 3911 02:50:40,276 --> 02:50:41,678 DARK MATTER AND PICKED KIDS 3912 02:50:41,678 --> 02:50:42,746 DOING AS EXPECTED. 3913 02:50:42,746 --> 02:50:44,781 SO THEN IN COLLABORATION WITH 3914 02:50:44,781 --> 02:50:46,416 KATHY AND OTHER MEMBERS OF OUR 3915 02:50:46,416 --> 02:50:49,486 TEAM WE CAME UP WITH THIS 3916 02:50:49,486 --> 02:50:50,653 INTERVIEW DESIGN WHICH IS 3917 02:50:50,653 --> 02:50:54,891 ACTUALLY TITLE LY -- TIGHTLY 3918 02:50:54,891 --> 02:50:55,592 INTEGRATED WITH THE RESEARCH AND 3919 02:50:55,592 --> 02:51:03,133 LOVE THE WAY THE METHODS CAN 3920 02:51:03,133 --> 02:51:05,735 COMPLEMENT EACH OTHER AND 3921 02:51:05,735 --> 02:51:07,871 INTERVIEWED SEPARATELY AND 3922 02:51:07,871 --> 02:51:11,908 TALKED TO ABOUT 40 FAMILIES 3923 02:51:11,908 --> 02:51:14,644 SPREAD OVER CITIES AND NOTICE 3924 02:51:14,644 --> 02:51:15,912 STRUCTURED FACTORS THAT MAY BE 3925 02:51:15,912 --> 02:51:17,714 HARDER FOR THE FAMILIES 3926 02:51:17,714 --> 02:51:19,783 THEMSELVES TO SEE IF THEY ONLY 3927 02:51:19,783 --> 02:51:21,618 STAY IN ONE CITY. 3928 02:51:21,618 --> 02:51:24,087 WE DID LIFE HISTORY INTERVIEWS 3929 02:51:24,087 --> 02:51:25,855 AND EXPLICITLY FOCUSSED ON THREE 3930 02:51:25,855 --> 02:51:28,124 TIME PERIODS. 3931 02:51:28,124 --> 02:51:29,726 THE BIRTH TO YEAR 9 BECAUSE 3932 02:51:29,726 --> 02:51:31,961 THAT'S THE TIME PERIOD THAT THE 3933 02:51:31,961 --> 02:51:33,730 FUTURE FAMILIES DATA COLLECTION 3934 02:51:33,730 --> 02:51:37,734 WAS HAPPENING, THE 9 TO 15 AND 3935 02:51:37,734 --> 02:51:40,036 THAT THERE WAS A GAP WITH NO 3936 02:51:40,036 --> 02:51:41,538 DATA COLLECTION AND 15 PLUS TIME 3937 02:51:41,538 --> 02:51:44,040 PERIOD AFTER THE RESULTS YOU SAW 3938 02:51:44,040 --> 02:51:46,076 IN THE FRAGILE FAMILIES 3939 02:51:46,076 --> 02:51:46,342 CHALLENGE. 3940 02:51:46,342 --> 02:51:48,244 THAT IS NOT RELEVANT TO 3941 02:51:48,244 --> 02:51:50,246 EXPLAINING THE FRAGILE FAMILIES 3942 02:51:50,246 --> 02:51:51,281 CHALLENGE AND USEFUL FOR 3943 02:51:51,281 --> 02:51:53,349 UNDERSTANDING THE LIVES OF THESE 3944 02:51:53,349 --> 02:51:53,616 FAMILIES. 3945 02:51:53,616 --> 02:51:55,852 OF ONE INTERESTING THING ABOUT 3946 02:51:55,852 --> 02:51:58,555 THE INTERVIEW IS WE KNOW A LOT 3947 02:51:58,555 --> 02:51:59,989 ABOUT THE FAMILIES BEFORE WE 3948 02:51:59,989 --> 02:52:01,124 TALK TO THEM. 3949 02:52:01,124 --> 02:52:02,826 IN FACT WE HAD BEEN TALKING TO 3950 02:52:02,826 --> 02:52:07,297 THEM SINCE THEIR KID WAS BORN 3951 02:52:07,297 --> 02:52:11,701 AND IN DEPTH INTERVIEWS WE 3952 02:52:11,701 --> 02:52:12,202 TALKED ABOUT HOW MUCH 3953 02:52:12,202 --> 02:52:15,371 INFORMATION WE WANTED 3954 02:52:15,371 --> 02:52:16,973 INTERVIEWERS TO HAVE OR NOT HAVE 3955 02:52:16,973 --> 02:52:20,143 AND THE LEAD INTERVIEWER WAS 3956 02:52:20,143 --> 02:52:21,444 BLIND TO THE INFORMATION ABOUT 3957 02:52:21,444 --> 02:52:22,712 THE OUTCOMES. 3958 02:52:22,712 --> 02:52:23,980 SO THEY WERE BLIND TO WHETHER 3959 02:52:23,980 --> 02:52:25,582 THE OUTCOME OF THIS KID AT AGE 3960 02:52:25,582 --> 02:52:28,218 15 AND HOW IT COMPARED TO THE 3961 02:52:28,218 --> 02:52:30,086 PREDICTION AND THEN WE HAD A 3962 02:52:30,086 --> 02:52:34,124 SECOND INTERVIEWER UNBLINDED WHO 3963 02:52:34,124 --> 02:52:36,359 THOUGHT THE KID WAS DOING BETTER 3964 02:52:36,359 --> 02:52:40,296 OR WORSE THAN EXPECTED AND THE 3965 02:52:40,296 --> 02:52:42,999 SECOND INTERVIEWER WAS ABLE TO 3966 02:52:42,999 --> 02:52:44,501 UNDERSTAND MORE AND THE BLIND 3967 02:52:44,501 --> 02:52:47,470 INTERVIEWER DOING THE WHOLE AND 3968 02:52:47,470 --> 02:52:50,073 THE SECOND INTERVIEWER ASKING 3969 02:52:50,073 --> 02:52:51,641 FOLLOWING UP QUESTION AND THINK 3970 02:52:51,641 --> 02:52:53,710 THIS DESIGN GETS THE BEST FROM A 3971 02:52:53,710 --> 02:52:55,678 BLIND AND UNBLIND DESIGN. 3972 02:52:55,678 --> 02:52:57,247 THEN WE READ AND DISCUSSED THE 3973 02:52:57,247 --> 02:53:00,083 INTERVIEW TRANSCRIPTS OVER AND 3974 02:53:00,083 --> 02:53:01,351 OVER AND OVER. 3975 02:53:01,351 --> 02:53:05,221 AND WE SETTLED INTO THIS 3976 02:53:05,221 --> 02:53:05,488 FRAMEWORK. 3977 02:53:05,488 --> 02:53:08,258 I WANT TO SHOW THE FRAMEWORK AND 3978 02:53:08,258 --> 02:53:09,959 GIVE YOU ONE EXAMPLE FROM THE 3979 02:53:09,959 --> 02:53:12,462 INTERVIEW AND THEN WE'LL WRAP 3980 02:53:12,462 --> 02:53:12,629 UP. 3981 02:53:12,629 --> 02:53:15,465 SO IF YOU THINK ABOUT THE ORIGIN 3982 02:53:15,465 --> 02:53:18,968 OF PREDICTION ERROR, WHAT WE 3983 02:53:18,968 --> 02:53:21,838 KNOW ACTUALLY IS THAT PREDICTION 3984 02:53:21,838 --> 02:53:24,374 ERROR CAN BE DECOMPOSED TO THE 3985 02:53:24,374 --> 02:53:30,513 TWO COMPONENTS THAT ARE MUTUALLY 3986 02:53:30,513 --> 02:53:31,247 EXCLUSIVE AND EXHAUSTIVE. 3987 02:53:31,247 --> 02:53:35,185 THIS IS WHAT CANNOT BE RESOLVED 3988 02:53:35,185 --> 02:53:37,620 EVER BY PREDICTIVE ALGORITHM OR 3989 02:53:37,620 --> 02:53:39,422 MORE DATA SETS. 3990 02:53:39,422 --> 02:53:41,724 THIS IS WITHIN EACH GROUP, 3991 02:53:41,724 --> 02:53:42,492 SUBGROUP OF PEOPLE THERE'S 3992 02:53:42,492 --> 02:53:43,660 VARIABILITY IN THE OUTCOME AND 3993 02:53:43,660 --> 02:53:46,162 TO THE ALGORITHM WE COULD NEVER 3994 02:53:46,162 --> 02:53:47,964 DO BETTER THAN JUST PREDICTING 3995 02:53:47,964 --> 02:53:49,532 THE MEAN OF THE SUB GROUP. 3996 02:53:49,532 --> 02:53:50,533 SECOND, WE HAVE LEARNING ERROR 3997 02:53:50,533 --> 02:53:52,702 WHICH IS THE ABILITY OF THE 3998 02:53:52,702 --> 02:53:55,905 MACHINE LEARNING MODEL TO 3999 02:53:55,905 --> 02:53:56,606 CORRECTLY RECOVER THE MANY 4000 02:53:56,606 --> 02:53:58,608 SUBGROUP MEAN OF THIS GROUP. 4001 02:53:58,608 --> 02:54:01,711 SO ROUGHLY ONE COMPONENT IS LIKE 4002 02:54:01,711 --> 02:54:02,612 HOW MUCH WITHIN GROUP VARIATION 4003 02:54:02,612 --> 02:54:04,480 THERE IS AND THE SECOND 4004 02:54:04,480 --> 02:54:06,149 COMPONENT IS HOW WELL THE 4005 02:54:06,149 --> 02:54:09,719 MACHINE LEARNING MODEL CAN 4006 02:54:09,719 --> 02:54:12,288 KRAEKT -- CORRECTLY RECOVER THE 4007 02:54:12,288 --> 02:54:13,990 SUBGROUP MEAN. 4008 02:54:13,990 --> 02:54:16,659 WE TALKED ABOUT THE DIFFERENT 4009 02:54:16,659 --> 02:54:18,294 SOCIAL AND MEASUREMENT PROCESSES 4010 02:54:18,294 --> 02:54:20,630 THAT LED TO LEARNING ERROR. 4011 02:54:20,630 --> 02:54:22,365 WE TALKED ABOUT THREE DIFFERENT. 4012 02:54:22,365 --> 02:54:25,768 THINGS THAT CAN LEAD TO THIS 4013 02:54:25,768 --> 02:54:25,969 ERROR. 4014 02:54:25,969 --> 02:54:28,037 THIS IS ERROR THAT CANNOT BE 4015 02:54:28,037 --> 02:54:30,273 RESOLVED BY ANY MACHINE LEARNING 4016 02:54:30,273 --> 02:54:31,841 OR ANY AMOUNT OF DATA. 4017 02:54:31,841 --> 02:54:36,112 ONE EXAMPLE THIS IS FROM BELLA. 4018 02:54:36,112 --> 02:54:38,615 SO BELLA WAS A PARTICIPANT IN 4019 02:54:38,615 --> 02:54:40,850 OUR STUDY AND BELLA'S FATHER 4020 02:54:40,850 --> 02:54:42,151 UNFORTUNATELY PASSED AWAY AND 4021 02:54:42,151 --> 02:54:44,220 HER MOTHER BECAME DEPRESSED AND 4022 02:54:44,220 --> 02:54:46,789 HERE'S WHAT BELLA TOLD US. 4023 02:54:46,789 --> 02:54:49,726 WHEN HE PASSED AWAY, SHE CHECKED 4024 02:54:49,726 --> 02:54:53,529 OUT AND WAS DEPRESSED AND MY 4025 02:54:53,529 --> 02:54:58,368 MOTHER AND I WERE IN OUR OWN 4026 02:54:58,368 --> 02:55:00,803 WORLD AND THE PREDICTED GPA 4027 02:55:00,803 --> 02:55:02,238 BASED ON THE DATA WE HAVE 4028 02:55:02,238 --> 02:55:04,807 COLLECTED FROM BIRTH TO 9 WAS 3. 4029 02:55:04,807 --> 02:55:06,909 06 BUT NONE OF THAT INCLUDED THE 4030 02:55:06,909 --> 02:55:09,345 FACT THAT BELLA'S FATHER HAD 4031 02:55:09,345 --> 02:55:11,214 PASSED AWAY AND HER MOTHER HAD 4032 02:55:11,214 --> 02:55:13,716 BECOME DEPRESSED BECAUSE THAT 4033 02:55:13,716 --> 02:55:14,417 HAPPENED AFTER OUR DATA 4034 02:55:14,417 --> 02:55:16,653 COLLECTION HAD TAKEN PLACE AND 4035 02:55:16,653 --> 02:55:20,990 SO BELLA'S ACTUALLY GPA WAS 1.5. 4036 02:55:20,990 --> 02:55:24,160 HERE'S AN EXAMPLE OF SOMETHING 4037 02:55:24,160 --> 02:55:25,728 THAT HAPPENED OUTSIDE OUR DATA 4038 02:55:25,728 --> 02:55:26,963 COLLECTION WINDOW AND COULD NOT 4039 02:55:26,963 --> 02:55:30,400 HAVE MEASURED AND THOSE KINDS OF 4040 02:55:30,400 --> 02:55:40,943 UNMEASURABLE THINGS CAN LEAD TO 4041 02:55:44,080 --> 02:55:49,085 IRREDUCIBLE ERROR AND AND 4042 02:55:49,085 --> 02:55:50,987 THERE'S A NEW PAPER COMING OUT 4043 02:55:50,987 --> 02:55:52,655 THIS WEEK IN THE NEXT STUDIES 4044 02:55:52,655 --> 02:55:54,490 AND TALK ABOUT OUR NEXT STEPS. 4045 02:55:54,490 --> 02:55:56,326 SO WE FOUND THAT THE BEST 4046 02:55:56,326 --> 02:55:58,761 PREDICTIVE MODELS TRAINED ON A 4047 02:55:58,761 --> 02:56:00,997 HUGE DATA SET WERE NOT VERY 4048 02:56:00,997 --> 02:56:01,264 ACCURATE. 4049 02:56:01,264 --> 02:56:04,100 WE DID IN DEPTH INTERVIEWS TO 4050 02:56:04,100 --> 02:56:10,640 BUILD A CONCEPTUAL FRAMEWORK AND 4051 02:56:10,640 --> 02:56:14,310 PROCESSES THAT LEAD TO THE 4052 02:56:14,310 --> 02:56:14,544 ERRORS. 4053 02:56:14,544 --> 02:56:16,412 WE WANT TO AND WHEN I WAS 4054 02:56:16,412 --> 02:56:19,415 TRAINED AS A SOCIOLOGIST MOST 4055 02:56:19,415 --> 02:56:23,086 THE DATA WE HAD WAS SHORT AND 4056 02:56:23,086 --> 02:56:25,288 THIN AND RELATIVELY FEW NUMBER 4057 02:56:25,288 --> 02:56:28,024 OF FEATURES OR VARIABLES AND IT 4058 02:56:28,024 --> 02:56:30,159 COMES FROM THE NUMBER OF CASES 4059 02:56:30,159 --> 02:56:32,328 AND FEATURES AND INCREASINGLY WE 4060 02:56:32,328 --> 02:56:33,730 HAVE THIS SHORT AND WIDE DATA 4061 02:56:33,730 --> 02:56:35,131 LIKE THE FUTURE OF FAMILIES DATA 4062 02:56:35,131 --> 02:56:37,633 WHERE WE HAVE A HUGE NUMBER OF 4063 02:56:37,633 --> 02:56:38,668 VARIABLES AND HAVE A LIMITED 4064 02:56:38,668 --> 02:56:40,103 NUMBER OF CASES AND HERE WE 4065 02:56:40,103 --> 02:56:41,404 THINK THE LIMIT OF PREDICTION 4066 02:56:41,404 --> 02:56:44,073 WILL COME FROM THE NUMBER OF 4067 02:56:44,073 --> 02:56:46,843 CASES OR THE LACK OF THEORY THAT 4068 02:56:46,843 --> 02:56:49,145 HELPS US FIND AN APPROPRIATE 4069 02:56:49,145 --> 02:56:49,846 LOW-DIMENSIONAL REPRESENTATION 4070 02:56:49,846 --> 02:56:51,314 OF THE FEATURES. 4071 02:56:51,314 --> 02:56:53,249 AND ANOTHER ALTERNATIVE IS WE 4072 02:56:53,249 --> 02:56:55,251 HAVE ADMINISTRATIVE DATA WHICH 4073 02:56:55,251 --> 02:56:57,620 IS OFTEN TALL WITH MANY CASES 4074 02:56:57,620 --> 02:57:00,723 BUT THIN WITH VERY FEW FEATURES 4075 02:57:00,723 --> 02:57:02,792 AND THEY'RE NOT THE FEATURES 4076 02:57:02,792 --> 02:57:04,327 SOCIAL SCIENTISTS CARE ABOUT AND 4077 02:57:04,327 --> 02:57:06,362 MANY OPEN QUESTIONS ABOUT TALL 4078 02:57:06,362 --> 02:57:07,163 AND WIDE DATA. 4079 02:57:07,163 --> 02:57:11,067 SO WHAT HAPPENS WHEN YOU HAVE 4080 02:57:11,067 --> 02:57:12,702 TALL AND WIDE DATA, WHERE MIGHT 4081 02:57:12,702 --> 02:57:13,736 THE LIMIT OF SEPARATION COME 4082 02:57:13,736 --> 02:57:15,238 FROM THAT'S SOMETHING WE'RE 4083 02:57:15,238 --> 02:57:17,740 EXCITED ABOUT EXPLORING THIS 4084 02:57:17,740 --> 02:57:19,942 SUMMER IN THE DUTCH POPULATION 4085 02:57:19,942 --> 02:57:26,315 REGISTRY MAINTAINED BY STATISTIC 4086 02:57:26,315 --> 02:57:27,683 NETHERLANDS AND PEOPLE LIVING IN 4087 02:57:27,683 --> 02:57:34,357 THE NETHERLANDS AND A GREAT 4088 02:57:34,357 --> 02:57:36,993 PLACE TO USE A.I. MODELS 4089 02:57:36,993 --> 02:57:37,260 GENERALLY. 4090 02:57:37,260 --> 02:57:39,028 AND COMPUTATIONAL SOCIAL SCIENCE 4091 02:57:39,028 --> 02:57:42,365 AND THE INTERSECTION BETWEEN 4092 02:57:42,365 --> 02:57:44,100 SOCIAL AND DATA SCIENCE WAS 4093 02:57:44,100 --> 02:57:46,035 VERSION ONE AND I THINK WE'RE 4094 02:57:46,035 --> 02:57:48,504 GOING TO MOVE TO VERSION 2 WHICH 4095 02:57:48,504 --> 02:57:49,939 IS A MIX BETWEEN SOCIAL SCIENCE 4096 02:57:49,939 --> 02:57:50,540 AND A.I. 4097 02:57:50,540 --> 02:57:53,209 I THINK THIS WILL HAVE DIFFERENT 4098 02:57:53,209 --> 02:57:55,878 CHARACTERISTICS THAN THIS FIRST 4099 02:57:55,878 --> 02:57:59,382 GENERATION OF COMPUTATIONAL 4100 02:57:59,382 --> 02:58:00,883 SOCIAL SCIENCE AND I'M EXCITED 4101 02:58:00,883 --> 02:58:02,218 ABOUT THE NEW ERA AND AT THE END 4102 02:58:02,218 --> 02:58:06,355 I'D LIKE TO URN IT IT OVER TO 4103 02:58:06,355 --> 02:58:09,358 KATHY TO TALK MORE ABOUT THE 4104 02:58:09,358 --> 02:58:11,194 FUTURE OF THE FUTURE OF FAMILY 4105 02:58:11,194 --> 02:58:12,762 AND WELL BEING STUDY. 4106 02:58:12,762 --> 02:58:13,596 >> FANTASTIC. 4107 02:58:13,596 --> 02:58:16,999 I'LL SAY A COUPLE THINGS. 4108 02:58:16,999 --> 02:58:19,602 FIRST OF ALL THIS STUDY IS ONE 4109 02:58:19,602 --> 02:58:23,406 OF MANY STUDIES IN THE FUTURE OF 4110 02:58:23,406 --> 02:58:25,708 FAMILIES THAT IS A SATELLITE 4111 02:58:25,708 --> 02:58:26,042 STUDY. 4112 02:58:26,042 --> 02:58:28,478 THE SATELLITE STUDIES HAVE 4113 02:58:28,478 --> 02:58:29,178 ALLOWED US TO BE VERY 4114 02:58:29,178 --> 02:58:31,013 ENTREPRENEURIAL AS A STUDY AND 4115 02:58:31,013 --> 02:58:32,882 TO EVOLVE IN WAYS THAT WERE 4116 02:58:32,882 --> 02:58:38,554 NEVER PREDICTED BY THE FOUNDERS 4117 02:58:38,554 --> 02:58:42,258 OF THIS STUDY RUN AND ALL ARE 4118 02:58:42,258 --> 02:58:47,930 BUILT ON THE BED ROM OF A HIGH 4119 02:58:47,930 --> 02:58:49,298 RESPONSE RATE LONGITUDINAL 4120 02:58:49,298 --> 02:58:51,801 POPULATION BASED BIRTH COHORT 4121 02:58:51,801 --> 02:58:53,736 STUDY AND GIVES STRENGTH TO THE 4122 02:58:53,736 --> 02:58:54,337 SATELLITE STUDIES. 4123 02:58:54,337 --> 02:58:57,373 SECOND, AS YOU CAN SEE FROM THE 4124 02:58:57,373 --> 02:58:59,342 EXAMPLE WE'RE VERY ITERATIVE IN 4125 02:58:59,342 --> 02:59:00,243 OUR APPROACH. 4126 02:59:00,243 --> 02:59:04,146 YOU MAY KNOW I'M A QUALITATIVE 4127 02:59:04,146 --> 02:59:10,953 IN ETHNO GRAPHIC SCIENTIST AND 4128 02:59:10,953 --> 02:59:13,956 WE'RE BLENDING THESE METHODS AND 4129 02:59:13,956 --> 02:59:15,725 FROM EACH OF THE SATELLITE 4130 02:59:15,725 --> 02:59:17,693 STUDIES WE'RE BRINGING 4131 02:59:17,693 --> 02:59:18,227 INFORMATION TO THE CORE 4132 02:59:18,227 --> 02:59:20,363 FUNDAMENTALLY TRANSFORMING THE 4133 02:59:20,363 --> 02:59:21,731 CORE IN THE WAY THAT IS TRULY 4134 02:59:21,731 --> 02:59:24,300 INNOVATIVE. 4135 02:59:24,300 --> 02:59:27,503 THIRD WE'RE FOLDING IT AT EVERY 4136 02:59:27,503 --> 02:59:29,405 LEVEL YOUNG PEOPLE, YOUNG 4137 02:59:29,405 --> 02:59:29,705 RESEARCHERS. 4138 02:59:29,705 --> 02:59:31,574 MANY OF OUR SATELLITE STUDIES 4139 02:59:31,574 --> 02:59:35,845 ARE LED BY YOUNG RESEARCHERS, 4140 02:59:35,845 --> 02:59:38,514 LAURYN HILL, MATT, YOU'RE QUITE 4141 02:59:38,514 --> 02:59:43,419 A BIT YOUNGER THAN ME. 4142 02:59:43,419 --> 02:59:47,123 AND ALL OF THESE YOUNGER 4143 02:59:47,123 --> 02:59:49,725 SCHOLARS ARE BUILDING THEIR 4144 02:59:49,725 --> 02:59:52,161 CAREER ON THIS BED ROCK OF 4145 02:59:52,161 --> 02:59:54,997 HIGHLY RELIABLE DATA. 4146 02:59:54,997 --> 02:59:58,501 AND WE SUPPORT THESE YOUNG 4147 02:59:58,501 --> 03:00:00,069 RESEARCHERS AS THEY LEAD THESE 4148 03:00:00,069 --> 03:00:01,237 SATELLITE STUDIES AND GARNER 4149 03:00:01,237 --> 03:00:02,505 THEIR OWN RESEARCH FUNDING. 4150 03:00:02,505 --> 03:00:05,608 WE RUN THE SUMMER DATA WORKSHOP 4151 03:00:05,608 --> 03:00:08,210 EVERY YEAR FOCUSSED ON YOUNG 4152 03:00:08,210 --> 03:00:10,413 SCHOLARS OF COLOR AND WE SUPPORT 4153 03:00:10,413 --> 03:00:12,848 EVOLVING TRAINING THROUGH 4154 03:00:12,848 --> 03:00:14,750 WORKSHOPS WHERE PEOPLE CAN 4155 03:00:14,750 --> 03:00:16,218 PRESENT THEIR RESEARCH AND GET 4156 03:00:16,218 --> 03:00:16,686 EXPERT ADVICE. 4157 03:00:16,686 --> 03:00:18,554 ALL OF THESE EXPERTS ARE 4158 03:00:18,554 --> 03:00:19,889 ESPECIALLY FOCUSSED ON YOUNG 4159 03:00:19,889 --> 03:00:21,424 SCHOLARS OF COLOR. 4160 03:00:21,424 --> 03:00:22,592 I WILL STOP THERE. 4161 03:00:22,592 --> 03:00:25,294 WE'RE REALLY EXCITED TO PRESENT 4162 03:00:25,294 --> 03:00:27,196 THE STUDY TO YOU AND WISH YOU 4163 03:00:27,196 --> 03:00:30,066 LUCK IN YOUR DELIBERATIONS AND 4164 03:00:30,066 --> 03:00:33,736 YOU MEET IN WASHINGTON THIS WEEK 4165 03:00:33,736 --> 03:00:42,011 OR WHEREVER YOU ARE. 4166 03:00:42,011 --> 03:00:42,411 >> THANK YOU. 4167 03:00:42,411 --> 03:00:46,849 WE'RE IN ROCKVILLE, MARYLAND. 4168 03:00:46,849 --> 03:00:55,858 THANK YOU VERY MUCH DOCTORS EDIN 4169 03:00:55,858 --> 03:00:59,629 AND SALGANIK AND YOU TWO MAY NOT 4170 03:00:59,629 --> 03:01:03,866 BE PART OF AN IMPORTANT PART OF 4171 03:01:03,866 --> 03:01:05,001 OUR COUNCIL MEETING A SEGMENT 4172 03:01:05,001 --> 03:01:06,202 CALLED THE VOICE OF THE 4173 03:01:06,202 --> 03:01:06,802 PARTICIPANT. 4174 03:01:06,802 --> 03:01:08,571 THIS GIVES US A CHANCE TO HEAR 4175 03:01:08,571 --> 03:01:11,774 FROM THOSE WHO HAD PERSONAL 4176 03:01:11,774 --> 03:01:13,709 EXPERIENCES RELATED TO THE 4177 03:01:13,709 --> 03:01:16,012 RESEARCH THAT NICHD FUNDS. 4178 03:01:16,012 --> 03:01:21,484 TODAY WE ARE DELIGHTED TO 4179 03:01:21,484 --> 03:01:24,186 WELCOME MARY LOU AND ASSUMING 4180 03:01:24,186 --> 03:01:27,657 THE PERSON IN THE UPPER RIGHT IS 4181 03:01:27,657 --> 03:01:28,290 MARY LOU. 4182 03:01:28,290 --> 03:01:30,860 SHE HAS BEEN A PARTICIPANT IN 4183 03:01:30,860 --> 03:01:31,327 THE STUDY. 4184 03:01:31,327 --> 03:01:33,763 CAN YOU TELL US ABOUT YOUR 4185 03:01:33,763 --> 03:01:34,964 PERSONAL EXPERIENCES. 4186 03:01:34,964 --> 03:01:37,400 >> HI, GOOD AFTERNOON. 4187 03:01:37,400 --> 03:01:39,335 MY NAME IS MARY LOU I'M THE 4188 03:01:39,335 --> 03:01:41,604 MOTHER OF FIVE CHILDREN. 4189 03:01:41,604 --> 03:01:44,006 WE LIVE IN THE CITY OF 4190 03:01:44,006 --> 03:01:44,340 PHILADELPHIA. 4191 03:01:44,340 --> 03:01:46,342 BEFORE I BEGIN SHARING MY OWN 4192 03:01:46,342 --> 03:01:48,177 THOUGHTS ON THIS IMPORTANT 4193 03:01:48,177 --> 03:01:53,315 TOPIC, I'LL TAKE A MINUTE TO 4194 03:01:53,315 --> 03:01:59,255 THANK DR. EDIN FOR ASKING ME TO 4195 03:01:59,255 --> 03:02:00,089 PRESENT AND THANK YOU. 4196 03:02:00,089 --> 03:02:02,425 I'M VERY HONORED TO HAVE THIS 4197 03:02:02,425 --> 03:02:05,127 OPPORTUNITY TO BE THE VOICE OF 4198 03:02:05,127 --> 03:02:06,195 THE PARTICIPANT IN THIS MEETING 4199 03:02:06,195 --> 03:02:07,930 TODAY WITH ALL OF YOU HERE. 4200 03:02:07,930 --> 03:02:13,736 I ONLY HOPE I CAN DO JUSTICE TO 4201 03:02:13,736 --> 03:02:15,471 THE 25 YEARS OF RESEARCH THAT 4202 03:02:15,471 --> 03:02:23,713 WENT AMAZINGLY FAST FOR ME. 4203 03:02:23,713 --> 03:02:26,916 THE SURVEY BEGAN IN MID 1999. 4204 03:02:26,916 --> 03:02:30,753 I JUST DELIVERED TRIPLETS AFTER 4205 03:02:30,753 --> 03:02:34,156 3.4 WEEKS OF A HIGH-RISK REG 4206 03:02:34,156 --> 03:02:34,690 NANCY. 4207 03:02:34,690 --> 03:02:37,159 AFTER 18 WEEKS OF CARRYING WHAT 4208 03:02:37,159 --> 03:02:38,694 WE THOUGHT WAS OUR SECOND CHILD 4209 03:02:38,694 --> 03:02:41,597 WE DISCOVERED AFTER BLOOD WORK 4210 03:02:41,597 --> 03:02:42,231 WE WERE ACTUALLY HAVING NUMBER 4211 03:02:42,231 --> 03:02:44,567 TWO, THREE AND FOUR. 4212 03:02:44,567 --> 03:02:48,738 IT WAS QUITE A SHOCK TO LEARN WE 4213 03:02:48,738 --> 03:02:54,143 HAD HIT SUCH AMAZING ODDS WITH A 4214 03:02:54,143 --> 03:02:59,014 SPONTANEOUS TRIPLET BIRTH. 4215 03:02:59,014 --> 03:03:05,087 I WISHED WE WOULD HIT THE HOTRY 4216 03:03:05,087 --> 03:03:07,990 AND BUT THAT WOULD BE LIKE 4217 03:03:07,990 --> 03:03:11,460 LIGHTNING STRIKING TWICE AND OUR 4218 03:03:11,460 --> 03:03:12,261 OLDEST WAS IN RECALL HIGH SCHOOL 4219 03:03:12,261 --> 03:03:13,763 AND I COULDN'T PREPARE FOR THE 4220 03:03:13,763 --> 03:03:16,465 BIRTH CHILD AND WAS ON BED REST 4221 03:03:16,465 --> 03:03:18,033 LET ALONE THREE. 4222 03:03:18,033 --> 03:03:20,803 IT WAS HARD BUT I WAS DETERMINED 4223 03:03:20,803 --> 03:03:21,971 TO GO AS FAR AS I COULD FOR 4224 03:03:21,971 --> 03:03:22,972 THEIR GROWTH AND DEVELOPMENT. 4225 03:03:22,972 --> 03:03:26,041 I WAS IN AND OUT OF THE HOSPITAL 4226 03:03:26,041 --> 03:03:27,009 MANY TIMES. 4227 03:03:27,009 --> 03:03:28,944 I ALSO COULDN'T STOP THINKING 4228 03:03:28,944 --> 03:03:30,913 ABOUT THE LOSS OF MY INCOME AND 4229 03:03:30,913 --> 03:03:34,583 THE LOSS OF TIME AT HOME WITH MY 4230 03:03:34,583 --> 03:03:38,187 FAMILY TO PREPARE. 4231 03:03:38,187 --> 03:03:40,790 THE CHARGES THOSE DAYS IN THE 4232 03:03:40,790 --> 03:03:42,224 HOSPITAL WERE ADDING UP BUT I 4233 03:03:42,224 --> 03:03:43,259 NEEDED TO PHONE HOME AND CHECK 4234 03:03:43,259 --> 03:03:45,961 IN AND KEEP OUR FAMILY AND 4235 03:03:45,961 --> 03:03:48,898 FRIENDS UP DATED AND PASS TIME 4236 03:03:48,898 --> 03:03:49,598 WATCHING TV. 4237 03:03:49,598 --> 03:03:52,635 I WAS WORRIED AND OUR FAMILY 4238 03:03:52,635 --> 03:03:53,269 DEMOGRAPHIC WAS CHANGED IN THREE 4239 03:03:53,269 --> 03:03:56,939 MINUTES. 4240 03:03:56,939 --> 03:03:59,108 NOT LONG AFTER DELIVERY A WOMAN 4241 03:03:59,108 --> 03:04:02,111 CAME INTO MY ROOM AND ASKED IF I 4242 03:04:02,111 --> 03:04:05,114 WANTED TO PARTICIPATE IN A 4243 03:04:05,114 --> 03:04:05,347 SURVEY. 4244 03:04:05,347 --> 03:04:07,116 THERE WAS A SMALL STIPEND SHE 4245 03:04:07,116 --> 03:04:14,557 EXPLAINED SO I THOUGHT GREAT 4246 03:04:14,557 --> 03:04:16,325 I'LL PAY FOR THE TV. 4247 03:04:16,325 --> 03:04:18,327 SHE SAID WE COULD USE THE FIRST 4248 03:04:18,327 --> 03:04:21,730 BORN, AKA, BABY A NAMED LUKE. 4249 03:04:21,730 --> 03:04:25,000 I DIDN'T FULLY THEN REALIZE THE 4250 03:04:25,000 --> 03:04:26,535 SCOPE OF THE STUDY OR HOW IT 4251 03:04:26,535 --> 03:04:28,838 WOULD BECOME A SHARED EXPERIENCE 4252 03:04:28,838 --> 03:04:35,277 FOR JUST LUKE AND I OVER THE 4253 03:04:35,277 --> 03:04:39,682 PART OF 25 YEARS. 4254 03:04:39,682 --> 03:04:42,218 AT FIRST MY HUSBAND AND I WERE 4255 03:04:42,218 --> 03:04:44,787 ASKED QUESTIONS AND OUR 4256 03:04:44,787 --> 03:04:45,454 FINANCIAL CIRCUMSTANCES AND 4257 03:04:45,454 --> 03:04:49,091 PERHAPS OUR EDUCATIONAL 4258 03:04:49,091 --> 03:04:53,796 BACKGROUNDS AND BELIEFS. 4259 03:04:53,796 --> 03:04:55,097 NAMELY DISCUSSED THE MANY 4260 03:04:55,097 --> 03:04:59,568 REARING OF LUKE AND HOW HOME 4261 03:04:59,568 --> 03:05:00,903 TASKS WOULD BE DIVIDED AND WE 4262 03:05:00,903 --> 03:05:05,174 HAD OUR FIFTH CHILD IN 2001. 4263 03:05:05,174 --> 03:05:10,112 SOON THE SURVEY BECAME THE 4264 03:05:10,112 --> 03:05:11,480 SURVEY OF PARENTS AS LUKE BECAME 4265 03:05:11,480 --> 03:05:15,551 MORE VERBAL AND GREW HE BECAME 4266 03:05:15,551 --> 03:05:19,388 MORE OF THE FOCUS IN VISITS. 4267 03:05:19,388 --> 03:05:20,756 WE'D BE WEIGHED AND MEASURED AND 4268 03:05:20,756 --> 03:05:22,458 ASKED A SERIES MUCH QUESTIONS. 4269 03:05:22,458 --> 03:05:24,059 SOMETIMES HE'D BE GIVEN PICTURES 4270 03:05:24,059 --> 03:05:26,795 AND ASKED TO DESCRIBE THEM. 4271 03:05:26,795 --> 03:05:30,599 I ALWAYS FELT THEY WERE EARLY 4272 03:05:30,599 --> 03:05:32,167 CHILDHOOD I.Q. TESTS. 4273 03:05:32,167 --> 03:05:34,837 THOUGH MY HUSBAND WAS SURVEYED 4274 03:05:34,837 --> 03:05:36,639 EARLY ON, IT SEEMS TO HAVE 4275 03:05:36,639 --> 03:05:37,573 BECOME MORE FOCUSSED ON LUKE AND 4276 03:05:37,573 --> 03:05:42,244 ME AT SOME POINT. 4277 03:05:42,244 --> 03:05:43,245 STAYING IN THIS WAS IMPORTANT AS 4278 03:05:43,245 --> 03:05:47,950 IT ENABLE D ME TO HAVE THE ONE 4279 03:05:47,950 --> 03:05:49,919 THING I GOT TO DO AND LET ME SEE 4280 03:05:49,919 --> 03:05:52,688 HIS GROWTH AND DEVELOPMENT 4281 03:05:52,688 --> 03:05:54,857 SEPARATE FROM THE OTHERS. 4282 03:05:54,857 --> 03:05:55,891 THIS WAS IMPORTANT BECAUSE 4283 03:05:55,891 --> 03:05:57,726 THOUGH HE WAS THE LARGEST BY 4284 03:05:57,726 --> 03:06:05,134 WEIGHT AT BIRTH, HE HAD THE MOST 4285 03:06:05,134 --> 03:06:08,871 COMPLICATIONS AND WAS IN NICU 4286 03:06:08,871 --> 03:06:11,840 THE LONGEST AND DEVELOPED A 4287 03:06:11,840 --> 03:06:13,175 SMALL SPEECH DELAY AND HAD EARLY 4288 03:06:13,175 --> 03:06:14,076 INTERVENTIONS SERVICES AT HOME 4289 03:06:14,076 --> 03:06:15,544 AND LATER AT SCHOOL. 4290 03:06:15,544 --> 03:06:18,914 I WAS FORTUNATE TO FIND SUCH 4291 03:06:18,914 --> 03:06:20,749 PROGRAMS AVAILABLE TO US. 4292 03:06:20,749 --> 03:06:23,252 OUR CONTINUED PARTICIPATION ALSO 4293 03:06:23,252 --> 03:06:25,721 ALLOWED US BOTH TO TRY AND HAVE 4294 03:06:25,721 --> 03:06:28,824 SOME IMPACT ON OTHER FAMILIES 4295 03:06:28,824 --> 03:06:29,692 AND CHILDREN. 4296 03:06:29,692 --> 03:06:32,895 THE OLDER HE GOT, HE BECAME MORE 4297 03:06:32,895 --> 03:06:36,131 AWARE THAT HIS EXPERIENCES IN 4298 03:06:36,131 --> 03:06:40,135 LIFE WERE A SNAPSHOT OR A PEEK 4299 03:06:40,135 --> 03:06:41,804 INTO OTHER KIDS HIS ABLE FOR THE 4300 03:06:41,804 --> 03:06:42,371 RESEARCHERS. 4301 03:06:42,371 --> 03:06:45,708 THROUGH THE STUDY I'D EXPLAIN 4302 03:06:45,708 --> 03:06:46,909 PROGRAMS COULD BE DEVELOPED OR 4303 03:06:46,909 --> 03:06:49,678 FUNDING IMPACTED ON THINGS THAT 4304 03:06:49,678 --> 03:06:51,080 AFFECT OTHER KIDS AND FAMILIES 4305 03:06:51,080 --> 03:06:54,216 JUST LIKE HIS. 4306 03:06:54,216 --> 03:06:56,418 HE ENJOYED IT AND WE WOULD 4307 03:06:56,418 --> 03:06:58,821 DISCUSS SOME THINGS AFTER A 4308 03:06:58,821 --> 03:07:00,189 VISIT OR A CALL. 4309 03:07:00,189 --> 03:07:02,958 I NEVER AT ANY POINT WANTED TO 4310 03:07:02,958 --> 03:07:05,327 TAINT HIS THOUGHTS OR REPLIES 4311 03:07:05,327 --> 03:07:06,628 PRIOR THOSE VISITS. 4312 03:07:06,628 --> 03:07:09,732 ONE YEAR WE WERE ASKED TO 4313 03:07:09,732 --> 03:07:15,337 PROVIDE A DNA SAM PAP -- SAMPLE 4314 03:07:15,337 --> 03:07:19,141 AND WONDERED WHAT IT WOULD SHOW 4315 03:07:19,141 --> 03:07:21,677 OR UTILIZED IN THE FUTURE AND 4316 03:07:21,677 --> 03:07:24,847 DID OUR SPIT TUBES TOGETHER AND 4317 03:07:24,847 --> 03:07:26,315 SENT IT BACK HOPING TO HELP THE 4318 03:07:26,315 --> 03:07:26,715 STUDY. 4319 03:07:26,715 --> 03:07:29,718 HE WAS BECOMING A BETWEEN TOO 4320 03:07:29,718 --> 03:07:30,886 FAST. 4321 03:07:30,886 --> 03:07:32,788 IN A FLASH THE SURVEY OF PARENTS 4322 03:07:32,788 --> 03:07:35,457 AND TEENS WAS UPON US AND AFTER 4323 03:07:35,457 --> 03:07:37,659 MY HUSBAND HAD BECOME DISABLED 4324 03:07:37,659 --> 03:07:41,296 IN 2007, I STARTED TO CYBER 4325 03:07:41,296 --> 03:07:43,165 SCHOOL MY CHILDREN AT HOME AND 4326 03:07:43,165 --> 03:07:46,468 WORK PART-TIME OUTSIDE THE HOME. 4327 03:07:46,468 --> 03:07:48,771 THIS ALLOWED LUKE THE 4328 03:07:48,771 --> 03:07:50,406 OPPORTUNITY TO EXPLORE MANY 4329 03:07:50,406 --> 03:07:53,709 EDUCATIONAL INTERESTS ON HIS 4330 03:07:53,709 --> 03:07:53,876 OWN. 4331 03:07:53,876 --> 03:07:57,713 AS HE GOT OLDER THE SURVEY 4332 03:07:57,713 --> 03:08:00,282 FOLLOW-UPS ALLOWED HIM TO 4333 03:08:00,282 --> 03:08:01,717 PURCHASE CAMERA EQUIPMENT OR 4334 03:08:01,717 --> 03:08:05,421 COMPUTER COMPONENTS. 4335 03:08:05,421 --> 03:08:07,756 HE SHOWED A GIFT FOR PHOTOGRAPHY 4336 03:08:07,756 --> 03:08:09,658 AND BUILT A FEW PCs FROM THE 4337 03:08:09,658 --> 03:08:10,592 BOTTOM UP. 4338 03:08:10,592 --> 03:08:12,895 THIS HELPED ME GREATLY AND 4339 03:08:12,895 --> 03:08:13,896 TAUGHT HIM TO BETTER HANDLE HIS 4340 03:08:13,896 --> 03:08:15,831 OWN FUNDS. 4341 03:08:15,831 --> 03:08:18,233 HE OUTGREW THOSE EARLY DELAYS 4342 03:08:18,233 --> 03:08:18,801 VERY FAST AND WAS EXTREMELY 4343 03:08:18,801 --> 03:08:21,437 BRIGHT. 4344 03:08:21,437 --> 03:08:23,372 I WORRIED ABOUT COLLEGE LOOMING 4345 03:08:23,372 --> 03:08:24,840 IN THE FUTURE AND COMING 4346 03:08:24,840 --> 03:08:25,207 QUICKLY. 4347 03:08:25,207 --> 03:08:27,242 WE WERE ALWAYS HAPPY TO GET THE 4348 03:08:27,242 --> 03:08:30,279 UPDATES OR REQUESTS SO FAMILIAR 4349 03:08:30,279 --> 03:08:30,946 TO US NOW. 4350 03:08:30,946 --> 03:08:33,115 THEY MEANT IT WAS TIME TO HELP 4351 03:08:33,115 --> 03:08:35,250 THE RESEARCH TEAM AT PRINCETON 4352 03:08:35,250 --> 03:08:35,784 AND COLUMBIA. 4353 03:08:35,784 --> 03:08:38,954 WE WERE LIKE PIONEERS IN THE 4354 03:08:38,954 --> 03:08:41,890 SENSE AND HAD A PURPOSE. 4355 03:08:41,890 --> 03:08:44,593 DURING OUR FINAL INTERVIEW 4356 03:08:44,593 --> 03:08:50,399 DR. EDIN AND MAT CAME TO OUR 4357 03:08:50,399 --> 03:08:50,766 HOME. 4358 03:08:50,766 --> 03:08:52,668 THIS WASN'T USUAL AND SEEMED 4359 03:08:52,668 --> 03:08:53,702 SPECIAL. 4360 03:08:53,702 --> 03:08:56,772 THEY HAD US BOTH SIGN NEW 4361 03:08:56,772 --> 03:08:57,706 WAIVERS, TO BE TAPED DURING THE 4362 03:08:57,706 --> 03:09:00,342 VISIT AND HAD TO INVENT A NEW 4363 03:09:00,342 --> 03:09:03,011 NAME TO BE USED TO REMAIN 4364 03:09:03,011 --> 03:09:03,278 ANONYMOUS. 4365 03:09:03,278 --> 03:09:05,314 IT WAS EXPLAIN THE TAPES COULD 4366 03:09:05,314 --> 03:09:07,349 BE REVIEWED IN THE FUTURE BY 4367 03:09:07,349 --> 03:09:11,520 THOSE INVOLVED IN IMPACT AND 4368 03:09:11,520 --> 03:09:13,956 RESEARCHING FAMILIES LIKE OURS. 4369 03:09:13,956 --> 03:09:16,758 WE BOTH SPOKE FOR SEVERAL HOURS 4370 03:09:16,758 --> 03:09:17,392 AND UNDERSTOOD THE IMPORTANCE OF 4371 03:09:17,392 --> 03:09:20,462 IT ALL. 4372 03:09:20,462 --> 03:09:22,197 THOUGH IT COULD BE SAID OUR 4373 03:09:22,197 --> 03:09:24,133 FAMILY IS FRAGILE, WE CONTINUED 4374 03:09:24,133 --> 03:09:26,435 TO DO OUR BEST AND FIND WAYS TO 4375 03:09:26,435 --> 03:09:29,271 ACCOMPLISH OUR SHARED OR 4376 03:09:29,271 --> 03:09:30,038 SINGULAR GOALS. 4377 03:09:30,038 --> 03:09:32,241 LUKE'S NOW GRADUATED FROM 4378 03:09:32,241 --> 03:09:35,744 COLLEGE WITH HONORS, HAS A B.S. 4379 03:09:35,744 --> 03:09:36,311 IN MANAGEMENT INFORMATION 4380 03:09:36,311 --> 03:09:37,312 SYSTEMS. 4381 03:09:37,312 --> 03:09:39,381 HE WORKED ON THE COLLEGE 4382 03:09:39,381 --> 03:09:41,650 NEWSPAPER AS A PHOTOGRAPHER, 4383 03:09:41,650 --> 03:09:44,720 PHOTO EDITOR AND FINALLY AS 4384 03:09:44,720 --> 03:09:45,721 THEIR BUSINESS MANAGER. 4385 03:09:45,721 --> 03:09:47,990 HE CONTINUES TO DO PHOTOGRAPHY 4386 03:09:47,990 --> 03:09:49,725 AND VIDEO WORK IN IN HIS FREE 4387 03:09:49,725 --> 03:09:53,262 TIME WHILE WORKING FOR A MAJOR 4388 03:09:53,262 --> 03:09:54,463 CORPORATION IN PHILADELPHIA THAT 4389 03:09:54,463 --> 03:09:56,331 HAS A GLOBAL FOOTPRINT. 4390 03:09:56,331 --> 03:09:59,301 HE MOVED OUT OF OUR HOME TWO 4391 03:09:59,301 --> 03:10:01,537 YEARS AGO AND AMAZES ME. 4392 03:10:01,537 --> 03:10:03,238 ALL CHILDREN DO TRUTHFULLY. 4393 03:10:03,238 --> 03:10:05,707 IT'S WHY I AGREED TO CONTINUE 4394 03:10:05,707 --> 03:10:08,577 THIS FOR 25 YEARS WITH MY SON. 4395 03:10:08,577 --> 03:10:10,412 I WANT MY CHILDREN AND ALL OF 4396 03:10:10,412 --> 03:10:13,615 OUR CHILDREN TO HAVE WHAT THEY 4397 03:10:13,615 --> 03:10:18,320 NEED IN ORDER TO BECOME 4398 03:10:18,320 --> 03:10:21,156 PRODUCTIVE CITIZENS OF THIS 4399 03:10:21,156 --> 03:10:21,390 COUNTRY. 4400 03:10:21,390 --> 03:10:22,891 THE FUTURE IS BASED ON THE 4401 03:10:22,891 --> 03:10:23,725 SUCCESS OF OUR YOUTH. 4402 03:10:23,725 --> 03:10:26,595 THE CHILDREN IN THIS STUDY ARE 4403 03:10:26,595 --> 03:10:27,196 NOW CALLED GEN Z. 4404 03:10:27,196 --> 03:10:30,165 LET'S SEE WHERE THEY GO. 4405 03:10:30,165 --> 03:10:32,834 I APPRECIATE YOU ALLOWING ME 4406 03:10:32,834 --> 03:10:35,671 THIS TIME TODAY AND HOPE THE 4407 03:10:35,671 --> 03:10:36,305 RESEARCH PRESENTED AS WELL AS 4408 03:10:36,305 --> 03:10:39,441 WHAT YOU CAN LEARN FROM MYSELF, 4409 03:10:39,441 --> 03:10:41,710 MY SON AND ALL THE PARTICIPANTS 4410 03:10:41,710 --> 03:10:43,812 IN THE STUDY ENLIGHTENS YOU. 4411 03:10:43,812 --> 03:10:45,581 WE MUST CONTINUE TO HELP 4412 03:10:45,581 --> 03:10:47,783 CHILDREN ATTAIN THE BEST 4413 03:10:47,783 --> 03:10:49,084 POSSIBLE OUTCOMES IN THEIR 4414 03:10:49,084 --> 03:10:50,085 LIVES. 4415 03:10:50,085 --> 03:10:53,288 IT TRULY BENEFITS US ALL. 4416 03:10:53,288 --> 03:10:54,489 I THANK YOU FOR YOUR OWN EFFORTS 4417 03:10:54,489 --> 03:10:57,726 ON BEHALF OF THESE IMPORTANT 4418 03:10:57,726 --> 03:10:59,895 TOPICS AS WELL AS CONTINUED 4419 03:10:59,895 --> 03:11:01,730 FUNDING OF PROGRAMS OR RESEARCH 4420 03:11:01,730 --> 03:11:05,467 THAT IMPACT THE FUTURE OF 4421 03:11:05,467 --> 03:11:06,635 CHILDHOOD DEVELOPMENT. 4422 03:11:06,635 --> 03:11:09,705 THANK YOU VERY MUCH FOR YOUR 4423 03:11:09,705 --> 03:11:19,815 TIME. 4424 03:12:08,664 --> 03:12:11,066 >> YOU SEEM SO CALM FOR RAISING 4425 03:12:11,066 --> 03:12:12,634 FIVE CHILDREN. 4426 03:12:12,634 --> 03:12:18,840 >> I HAVE ALL BOYS AND ONE 4427 03:12:18,840 --> 03:12:19,107 DAUGHTER. 4428 03:12:19,107 --> 03:12:20,142 >> I'M GRATEFUL TO PEOPLE WHO 4429 03:12:20,142 --> 03:12:24,479 SET ASIDE THEIR TIME AND YOU'VE 4430 03:12:24,479 --> 03:12:29,151 EXPRESSED INCREDIBLE COMMITMENT 4431 03:12:29,151 --> 03:12:31,920 OVER LUKE'S LIFE TIME. 4432 03:12:31,920 --> 03:12:37,426 THAT'S PRECIOUS. 4433 03:12:37,426 --> 03:12:47,736 WE ALL THANK YOU. 4434 03:12:48,236 --> 03:12:49,604 >> THANK YOU, HAVE A WONDERFUL 4435 03:12:49,604 --> 03:12:50,305 REST OF DAY. 4436 03:12:50,305 --> 03:12:53,375 >> THANK YOU, YOU AS WELL. 4437 03:12:53,375 --> 03:12:53,709 OKAY. 4438 03:12:53,709 --> 03:12:56,945 CONTINUING WITH THE THEME OF BIG 4439 03:12:56,945 --> 03:13:03,552 DATA, WE NOW HAVE DR. REBECCA 4440 03:13:03,552 --> 03:13:07,889 ROSEN NOT TO BE CONFUSED WITH 4441 03:13:07,889 --> 03:13:10,225 DR. RASOOLY FROM THE OFFICE OF 4442 03:13:10,225 --> 03:13:12,227 DATA SCIENCE AND SHARING. 4443 03:13:12,227 --> 03:13:14,396 SHE'S GOING TO REPORT ON HER 4444 03:13:14,396 --> 03:13:15,731 OFFICE'S ACTIVITIES IN DATA 4445 03:13:15,731 --> 03:13:20,869 SCIENCE AND SHARING AND HOW THAT 4446 03:13:20,869 --> 03:13:21,670 FACILITATES THE APPROPRIATE USE 4447 03:13:21,670 --> 03:13:26,408 OF ARTIFICIAL INTELLIGENCE IN 4448 03:13:26,408 --> 03:13:26,742 RESEARCH. 4449 03:13:26,742 --> 03:13:28,477 I'M ONLY SEEN YOU ON ZOOM THE 4450 03:13:28,477 --> 03:13:29,211 LAST FEW YEARS. 4451 03:13:29,211 --> 03:13:31,513 GREAT TO SEE YOU IN PERSON. 4452 03:13:31,513 --> 03:13:40,956 >> I WANT TO THANK THE FOLKS 4453 03:13:40,956 --> 03:13:47,529 BECAUSE THAT'S WHY WE'RE HERE. 4454 03:13:47,529 --> 03:13:48,630 >> PUT YOUR MICROPHONE UP TO 4455 03:13:48,630 --> 03:13:56,338 HEAR YOU BETTER. 4456 03:13:56,338 --> 03:13:57,606 >> I WANTED TO SAY THANK YOU 4457 03:13:57,606 --> 03:13:59,274 AGAIN FOR HAVING ME BACK HERE. 4458 03:13:59,274 --> 03:14:00,909 I PRESENTED LAST JANUARY AND 4459 03:14:00,909 --> 03:14:04,679 IT'S AN HONOR AND UNIQUE 4460 03:14:04,679 --> 03:14:05,247 OPPORTUNITY TO BE ABLE TO 4461 03:14:05,247 --> 03:14:06,615 PRESENT TO OUR ADVISORY COUNCIL 4462 03:14:06,615 --> 03:14:09,351 AN UPDATE ON DATA STRATEGY AND 4463 03:14:09,351 --> 03:14:10,419 ACTIVITIES SINCE THAT 4464 03:14:10,419 --> 03:14:12,921 PRESENTATION OF JANUARY 2023. 4465 03:14:12,921 --> 03:14:14,689 NICHD IS COMMITTED TO PROMOTING 4466 03:14:14,689 --> 03:14:17,926 DATA SHARING TO ACCELERATE 4467 03:14:17,926 --> 03:14:19,928 SCIENTIFIC PARTNERS. 4468 03:14:19,928 --> 03:14:25,066 THE STRATEGIC STEWARDSHIP GOAL 4469 03:14:25,066 --> 03:14:26,435 TWO OF OUR STRATEGIC PLAN 4470 03:14:26,435 --> 03:14:27,369 SCIENTIFIC STEWARDSHIP IS TO 4471 03:14:27,369 --> 03:14:29,137 FACILITATE DATA SHARING AND 4472 03:14:29,137 --> 03:14:30,972 ACCESS TO BIO SPECIMENS AND 4473 03:14:30,972 --> 03:14:32,107 WHERE OUR OFFICE WAS ESTABLISHED 4474 03:14:32,107 --> 03:14:34,009 THE OFFICE OF DATA SCIENCE AND 4475 03:14:34,009 --> 03:14:37,345 SHARING IN JULY OF 2021. 4476 03:14:37,345 --> 03:14:40,615 OUR TEAM DESIGN A REVISION AND 4477 03:14:40,615 --> 03:14:41,716 INNOVATIVE USE OF DATA AND 4478 03:14:41,716 --> 03:14:43,251 SPECIMENS THAT ACCELERATED 4479 03:14:43,251 --> 03:14:45,954 RESEARCH AND IMPROVES THE HEALTH 4480 03:14:45,954 --> 03:14:47,689 OF NICHD POPULATIONS. 4481 03:14:47,689 --> 03:14:49,257 VALERIE PATTON IS MY DEPUTY 4482 03:14:49,257 --> 03:14:55,997 DIRECTOR AND OUR TEAM MEMBERS, 4483 03:14:55,997 --> 03:14:57,732 ELIZABETH CLERKIN HAVE DONE MOST 4484 03:14:57,732 --> 03:15:01,470 THE WORK I PRESENT TODAY SO I 4485 03:15:01,470 --> 03:15:02,871 WANT TO THANK THEM VERY MUCH. 4486 03:15:02,871 --> 03:15:04,739 THE THEME OF MY TALK TODAY IS 4487 03:15:04,739 --> 03:15:08,310 OUR COMMITMENT TO HUMAN CENTERED 4488 03:15:08,310 --> 03:15:11,580 DESIGN FOR OUR DATA STRATEGY. 4489 03:15:11,580 --> 03:15:14,416 EVERYTHING WE DO IS DESIGN TO 4490 03:15:14,416 --> 03:15:16,218 ADDRESS NICHD COMMUNITY LEADS. 4491 03:15:16,218 --> 03:15:18,386 WE DEVELOPED RESOURCES AND TOOLS 4492 03:15:18,386 --> 03:15:21,723 TO ENABLE DATA SHARING AND DATA 4493 03:15:21,723 --> 03:15:23,592 SCIENCE ACROSS THE DATA OF LIFE 4494 03:15:23,592 --> 03:15:25,727 CYCLES AND DO THAT WITH THE ONE 4495 03:15:25,727 --> 03:15:28,096 NICHD APPROACH. 4496 03:15:28,096 --> 03:15:31,099 AT NICHD WE HAVE EXTRAMURAL AND 4497 03:15:31,099 --> 03:15:32,267 INTRAMURAL DATA SHARING 4498 03:15:32,267 --> 03:15:34,536 COMMITTEES AND THEY ADVISE ON 4499 03:15:34,536 --> 03:15:37,706 OUR IMPLEMENTATION OF POLICIES 4500 03:15:37,706 --> 03:15:40,709 AND ONE NICHD WIDE ECO SYSTEM 4501 03:15:40,709 --> 03:15:42,377 WORKING GROUP AND ADVISE ON OUR 4502 03:15:42,377 --> 03:15:45,413 STRATEGY FOR BUILDING OUT AND 4503 03:15:45,413 --> 03:15:48,049 CONNECTING OUR DATA RESOURCE. 4504 03:15:48,049 --> 03:15:49,684 THESE NICHD ADVISORY GROUPS ARE 4505 03:15:49,684 --> 03:15:54,389 COMPRISED OF STAFF MEMBERS WHO 4506 03:15:54,389 --> 03:15:56,691 REPRESENT THE BROAD RESEARCH 4507 03:15:56,691 --> 03:15:58,693 PORTFOLIO AND WORK WITH OFFICE 4508 03:15:58,693 --> 03:15:59,761 OF DIRECTOR COLLEAGUES THAT 4509 03:15:59,761 --> 03:16:02,130 INCLUDES COMMUNICATIONS, HEALTH 4510 03:16:02,130 --> 03:16:03,765 EQUITY AND GLOBAL HEALTH, PUBLIC 4511 03:16:03,765 --> 03:16:05,734 POLICY AND ETHICS AND SCIENCE 4512 03:16:05,734 --> 03:16:08,336 POLICY REPORTING AND ANALYSIS. 4513 03:16:08,336 --> 03:16:10,171 AS THEY'RE THEIR OFFICE 4514 03:16:10,171 --> 03:16:17,612 SUBMISSIONS OFFICE OFTEN 4515 03:16:17,612 --> 03:16:19,581 SYNERGIZE AND COLLABORATE WITH 4516 03:16:19,581 --> 03:16:21,983 OUR OFFICES AND THE OFFICE OF 4517 03:16:21,983 --> 03:16:24,486 DATA SCIENCE STRATEGY AND THAT 4518 03:16:24,486 --> 03:16:27,956 HELPS US TO ENSURE 4519 03:16:27,956 --> 03:16:29,724 INTEROPERABILITIES AND 4520 03:16:29,724 --> 03:16:31,359 CONSISTENT IN INTERNAL AND 4521 03:16:31,359 --> 03:16:36,498 EXTERNAL GUIDANCE. 4522 03:16:36,498 --> 03:16:39,234 OUR DATA SHARING ACTIVITIES ARE 4523 03:16:39,234 --> 03:16:40,669 FOUNDATIONAL TO THE RESPONSIBLE 4524 03:16:40,669 --> 03:16:42,837 AND INNOVATIVE DEVELOPMENT AND 4525 03:16:42,837 --> 03:16:45,707 USE OF MACHINE LEARNING AND 4526 03:16:45,707 --> 03:16:47,475 ARTIFICIAL INTELLIGENCE 4527 03:16:47,475 --> 03:16:48,276 TECHNOLOGIES FOR NICHD RESEARCH. 4528 03:16:48,276 --> 03:16:50,011 THAT'S A CORE THEME I WANT TO 4529 03:16:50,011 --> 03:16:51,246 GET ACROSS TODAY. 4530 03:16:51,246 --> 03:16:54,449 WE'RE DOING A LOT OF WORK IN 4531 03:16:54,449 --> 03:16:55,917 THIS SPACE BECAUSE DATA AND DATA 4532 03:16:55,917 --> 03:17:01,723 SCIENCE ARE FOUNDATIONAL FOR 4533 03:17:01,723 --> 03:17:02,190 A.I. 4534 03:17:02,190 --> 03:17:03,158 ACROSS THE FEDERAL GOVERNMENT 4535 03:17:03,158 --> 03:17:04,359 WE'RE ESTABLISHING FRAME WORKS 4536 03:17:04,359 --> 03:17:06,428 AND RESOURCES FOR THE 4537 03:17:06,428 --> 03:17:08,930 RESPONSIBLE DEVELOPMENT OF A.I. 4538 03:17:08,930 --> 03:17:13,735 IN OCTOBER 2023 THE 4539 03:17:13,735 --> 03:17:15,837 ADMINISTRATION RELEASED AN ORDER 4540 03:17:15,837 --> 03:17:19,307 OUTLINE AN APPROACH FOR SECURE, 4541 03:17:19,307 --> 03:17:23,111 SAFE AND TRUST WORTHY ARTIFICIAL 4542 03:17:23,111 --> 03:17:25,714 INTELLIGENCE AND MAXIMIZE THE 4543 03:17:25,714 --> 03:17:27,816 VALUE AND REDUCING THE RISK 4544 03:17:27,816 --> 03:17:29,718 ASSOCIATED WITH THE TECHNOLOGY 4545 03:17:29,718 --> 03:17:31,620 TO THE AMERICAN PEOPLE. 4546 03:17:31,620 --> 03:17:33,254 IN RESPONSE TO THIS ORDER THE 4547 03:17:33,254 --> 03:17:35,590 OFFICE OF MANAGEMENT AND BUDGET 4548 03:17:35,590 --> 03:17:38,627 RELEASED A MEMO IN MARCH 2024 4549 03:17:38,627 --> 03:17:40,962 THAT ADVISES FEDERAL AGENCIES ON 4550 03:17:40,962 --> 03:17:46,601 OUR DEVELOPMENT AND TIMELY 4551 03:17:46,601 --> 03:17:47,435 IMPLEMENTATION OF STRATEGIES. 4552 03:17:47,435 --> 03:17:48,903 NIH IS WORKING WITH THE 4553 03:17:48,903 --> 03:17:51,906 DEPARTMENT OF HEALTH AND HUMAN 4554 03:17:51,906 --> 03:17:54,409 SERVICES ON THE NEW A.I. TASK 4555 03:17:54,409 --> 03:18:00,215 FORCE UNDER THE CHAFE A.I. 4556 03:18:00,215 --> 03:18:05,387 OFFICER AND INSIDE NIH OUR 4557 03:18:05,387 --> 03:18:07,989 COLLEAGUES AT THE STRATEGY 4558 03:18:07,989 --> 03:18:08,790 RELEASED A DRAFT STRATEGY PLAN 4559 03:18:08,790 --> 03:18:12,193 FOR NIH FOR FEEDBACK FROM THE 4560 03:18:12,193 --> 03:18:13,161 COMMUNITY AND THIS PLAN INCLUDES 4561 03:18:13,161 --> 03:18:15,263 STRATEGY GOALS AND ACTIVITIES 4562 03:18:15,263 --> 03:18:20,568 THAT WILL BECOME THE CORNERSTONE 4563 03:18:20,568 --> 03:18:26,074 OF THE STRATEGY THAT ALIGN WITH 4564 03:18:26,074 --> 03:18:29,177 THE A.I. STRATEGY. 4565 03:18:29,177 --> 03:18:31,379 TO THE VOLUME AND DIVERSITY OF 4566 03:18:31,379 --> 03:18:35,517 NEW DATA SHARED UNDER THE NIH 4567 03:18:35,517 --> 03:18:37,719 DATA MANAGEMENT POLICY IS A 4568 03:18:37,719 --> 03:18:39,020 WATERSHED MOMENT FOR THE 4569 03:18:39,020 --> 03:18:40,922 RESPONSIBLE DEVELOPMENT AND USE 4570 03:18:40,922 --> 03:18:45,093 OF A.I. FOR NICHD RESEARCH. 4571 03:18:45,093 --> 03:18:48,730 SOON AFTER THIS POLICY WENT INTO 4572 03:18:48,730 --> 03:18:50,465 EFFECT WE ANALYZED THE FIRST 4573 03:18:50,465 --> 03:18:52,000 ROUND OF DATA MANAGEMENT AND 4574 03:18:52,000 --> 03:18:53,635 SHARING PLANS THAT CAME IN AND 4575 03:18:53,635 --> 03:18:56,471 DEVELOPED AND PUBLISHED ON OUR 4576 03:18:56,471 --> 03:18:57,739 WEBSITE SIMPLE TIPS FOR WRITING 4577 03:18:57,739 --> 03:19:02,077 AN ACCEPTABLE AND IMPLEMENTABLE 4578 03:19:02,077 --> 03:19:04,079 SHARING PLAN AND THESE ALIGN 4579 03:19:04,079 --> 03:19:06,181 WITH KEY EXPECTATIONS WRITTEN IN 4580 03:19:06,181 --> 03:19:08,817 THE NIH POLICY FROM THE OFFICE 4581 03:19:08,817 --> 03:19:11,953 OF SCIENCE POLICY AND MAP TO A 4582 03:19:11,953 --> 03:19:14,255 GUIDANCE ON THE ELEMENTS OF DATA 4583 03:19:14,255 --> 03:19:15,824 MANAGEMENT AND SHARING PLAN. 4584 03:19:15,824 --> 03:19:19,094 AT NICHD WE'RE FOCUSSED ON 4585 03:19:19,094 --> 03:19:20,462 IMPLEMENTING THE POLICY AS 4586 03:19:20,462 --> 03:19:24,432 WRITTEN AND HAVE NOT ADDED 4587 03:19:24,432 --> 03:19:26,367 SPECIFIC RECOMMENDATIONS. 4588 03:19:26,367 --> 03:19:28,069 OVER ALL THE POLICY EXPECTS 4589 03:19:28,069 --> 03:19:29,704 RESEARCHERS MAXIMIZE THE 4590 03:19:29,704 --> 03:19:30,638 APPROPRIATE SHARING OF 4591 03:19:30,638 --> 03:19:31,139 SCIENTIFIC DATA USING 4592 03:19:31,139 --> 03:19:32,774 ESTABLISHED DATA REPOSITORIES 4593 03:19:32,774 --> 03:19:34,342 AND SHARING NO LATER THAN THE 4594 03:19:34,342 --> 03:19:37,712 END OF THE AWARD PERIOD. 4595 03:19:37,712 --> 03:19:40,014 IT IS POSSIBLE THERE ARE 4596 03:19:40,014 --> 03:19:40,915 APPROPRIATE LIMITATIONS FOR DATA 4597 03:19:40,915 --> 03:19:41,850 SHARING. 4598 03:19:41,850 --> 03:19:44,619 THE POLICY ACKNOWLEDGES THAT BUT 4599 03:19:44,619 --> 03:19:48,156 EXPECTS RESEARCHERS JUSTIFY THE 4600 03:19:48,156 --> 03:19:49,724 LIMITATIONS, STAFF ARE 4601 03:19:49,724 --> 03:19:51,559 APPROPRIATELY REVIEW THE PLANS 4602 03:19:51,559 --> 03:19:53,261 AND JUSTIFICATIONS FOR ANY 4603 03:19:53,261 --> 03:19:54,462 STATED LIMITATIONS. 4604 03:19:54,462 --> 03:19:57,632 I'VE ADDED HERE THE POLICIES 4605 03:19:57,632 --> 03:20:01,369 WHAT I BELIEVE IS AN ELEGANT 4606 03:20:01,369 --> 03:20:04,539 DEFINITION AND NICELY 4607 03:20:04,539 --> 03:20:06,441 GENERALIZABLE AND THE ACT OF 4608 03:20:06,441 --> 03:20:08,977 MAKING DATA OF USE BY OTHERS AND 4609 03:20:08,977 --> 03:20:11,146 THE INSTITUTIONS AND IMPORTANTLY 4610 03:20:11,146 --> 03:20:13,948 THE BROADER PUBLIC. 4611 03:20:13,948 --> 03:20:15,683 FOR EXAMPLE, VIA AN ESTABLISHED 4612 03:20:15,683 --> 03:20:17,719 REPOSITORY AND THAT WILL BE A 4613 03:20:17,719 --> 03:20:22,791 THEME FOR ME TODAY. 4614 03:20:22,791 --> 03:20:23,825 WE'RE A LITTLE FURTHER IN NOW 4615 03:20:23,825 --> 03:20:25,026 AND HAVE SEEN MORE PLANS. 4616 03:20:25,026 --> 03:20:27,195 WE WORKED WITH OUR DATA SHARING 4617 03:20:27,195 --> 03:20:28,763 COMMITTEES TO REVIEW A SUBSET OF 4618 03:20:28,763 --> 03:20:30,532 ALL THE PLANS THAT HAVE COME IN 4619 03:20:30,532 --> 03:20:32,000 SINCE THE POLICY WENT INTO 4620 03:20:32,000 --> 03:20:34,135 EFFECT IN JANUARY OF LAST YEAR 4621 03:20:34,135 --> 03:20:36,538 AND WE HAVE IDENTIFIED SOME 4622 03:20:36,538 --> 03:20:39,440 COMMON ISSUES THAT WE ARE SEEING 4623 03:20:39,440 --> 03:20:43,545 ACROSS THE PLANS AND WORKING 4624 03:20:43,545 --> 03:20:46,147 TOGETHER BECAUSE THIS IS HARD TO 4625 03:20:46,147 --> 03:20:46,314 DO. 4626 03:20:46,314 --> 03:20:49,350 SO WE REVIEW THE PLANS TO 4627 03:20:49,350 --> 03:20:50,618 IDENTIFY COMMON ISSUES TO INFORM 4628 03:20:50,618 --> 03:20:53,721 UPDATES TO THOSE TIPS I JUST 4629 03:20:53,721 --> 03:20:55,523 DESCRIBED. 4630 03:20:55,523 --> 03:20:57,192 HERE ARE COMMON ISSUES. 4631 03:20:57,192 --> 03:20:59,561 WE SAW CHALLENGES WITH USING THE 4632 03:20:59,561 --> 03:21:02,564 NIH PROVIDED FORMAT PAGE AND 4633 03:21:02,564 --> 03:21:09,437 THAT WILL LEAD TO INCONSIST 4634 03:21:09,437 --> 03:21:09,804 INCONSISTENCIES. 4635 03:21:09,804 --> 03:21:11,573 AND THE DESCRIPTION WERE NOT 4636 03:21:11,573 --> 03:21:12,507 CLEAR AND LACK SUFFICIENT 4637 03:21:12,507 --> 03:21:15,076 DETAILS ABOUT THE STANDARDS AND 4638 03:21:15,076 --> 03:21:16,044 OTHER INFORMATION THAT PROGRAM 4639 03:21:16,044 --> 03:21:17,412 OFFICERS NEED TO ASSESS THE 4640 03:21:17,412 --> 03:21:18,079 PLANS. 4641 03:21:18,079 --> 03:21:19,948 SOME PLANS JUST DID NOT MEET THE 4642 03:21:19,948 --> 03:21:21,082 POLICY DEFINITION OF DATA 4643 03:21:21,082 --> 03:21:22,817 SHARING WHICH IS WHY I 4644 03:21:22,817 --> 03:21:24,419 HIGHLIGHTED THAT IN THE PREVIOUS 4645 03:21:24,419 --> 03:21:25,386 SLIDE. 4646 03:21:25,386 --> 03:21:26,721 RESEARCHERS MAY PLAN TO SHARE 4647 03:21:26,721 --> 03:21:29,724 DATA AT CONFERENCES OR 4648 03:21:29,724 --> 03:21:30,625 PUBLICATIONS OR SHARE ON REQUEST 4649 03:21:30,625 --> 03:21:32,894 WHICH IS NOT IN THE SPIRIT OR 4650 03:21:32,894 --> 03:21:34,596 DEFINITION OF NIH DATA SHARING. 4651 03:21:34,596 --> 03:21:39,601 WE ALSO DID SEE VAGUE LANGUAGE 4652 03:21:39,601 --> 03:21:41,169 ON JUSTIFIABLE LIMITATIONS FOR 4653 03:21:41,169 --> 03:21:42,470 SHARING DATA AND IT'S NOT 4654 03:21:42,470 --> 03:21:45,206 SUFFICIENT FOR OUR PROGRAM STAFF 4655 03:21:45,206 --> 03:21:47,742 TO ASSESS THE PLAN'S ACCEPTABLE. 4656 03:21:47,742 --> 03:21:50,211 WE SHARE THESE FINDINGS AND THE 4657 03:21:50,211 --> 03:21:52,013 RESULTING GUIDANCE WE DEVELOPED 4658 03:21:52,013 --> 03:21:54,015 FOR WRITING BETTER PLANS WITH 4659 03:21:54,015 --> 03:21:57,952 NICHD INTERNALLY AND COLLEAGUES 4660 03:21:57,952 --> 03:22:00,788 AND IN PUBLIC VENUES. 4661 03:22:00,788 --> 03:22:02,690 MOST RECENTLY VALERIE COTTON 4662 03:22:02,690 --> 03:22:05,627 PRESENTED THESE AND OTHER SLIDES 4663 03:22:05,627 --> 03:22:06,494 TO RESEARCH INSTITUTION 4664 03:22:06,494 --> 03:22:08,363 ADMINISTRATORS AND FACULTY AT 4665 03:22:08,363 --> 03:22:11,065 THE FEDERAL DEMONSTRATION 4666 03:22:11,065 --> 03:22:11,766 PARTNERSHIP AT THE ANNUAL 4667 03:22:11,766 --> 03:22:17,105 MEETING LAST MONTH. 4668 03:22:17,105 --> 03:22:21,709 IT'S A LONG-RUNNING 4669 03:22:21,709 --> 03:22:22,577 PUBLIC-PRIVATE PARTNERSHIP THAT 4670 03:22:22,577 --> 03:22:24,245 COLLABORATE ON HOW TO STREAMLINE 4671 03:22:24,245 --> 03:22:25,546 THE ADMINISTRATION OF FEDERALLY 4672 03:22:25,546 --> 03:22:27,715 FUNDED RESEARCH AND WE'RE 4673 03:22:27,715 --> 03:22:29,651 CONTINUING TO COLLABORATE WITH 4674 03:22:29,651 --> 03:22:31,319 THE OFFICE OF EXTRAMURAL 4675 03:22:31,319 --> 03:22:32,754 RESEARCH WHICH LED THE PANEL 4676 03:22:32,754 --> 03:22:35,790 THAT VALERIE PRESENTED ON AND 4677 03:22:35,790 --> 03:22:40,561 THE FVP ON THE IMPLEMENTATION OF 4678 03:22:40,561 --> 03:22:41,095 THIS POLICY. 4679 03:22:41,095 --> 03:22:43,431 WE'RE PUBLISHING ON OUR WEBSITE 4680 03:22:43,431 --> 03:22:45,233 EVERYTHING I'M TALKING ABOUT AND 4681 03:22:45,233 --> 03:22:45,733 PLORE. 4682 03:22:45,733 --> 03:22:47,902 WE PUBLISHED THOSE UPDATED TIPS 4683 03:22:47,902 --> 03:22:49,103 FOR WRITING THE DATA MANAGEMENT 4684 03:22:49,103 --> 03:22:50,838 AND SHARING PLAN AND PUBLISHED A 4685 03:22:50,838 --> 03:22:53,675 DATA REPOSITORY FINDER TO ENABLE 4686 03:22:53,675 --> 03:22:56,411 IDENTIFICATION OF ACCEPTABLE 4687 03:22:56,411 --> 03:22:57,879 REPOSITORIES FOR SHARING DATA, A 4688 03:22:57,879 --> 03:22:59,881 SET OF EXAMPLE PLANS THAT HAVE 4689 03:22:59,881 --> 03:23:03,051 ALSO BEEN PUBLISHED ON THE 4690 03:23:03,051 --> 03:23:05,520 CENTRAL NIH DATA WEBSITE AND A 4691 03:23:05,520 --> 03:23:09,557 WEBSITE ON DATA STANDARDS AND 4692 03:23:09,557 --> 03:23:10,458 PUBLISHED ADDITIONAL RESOURCES 4693 03:23:10,458 --> 03:23:11,859 AND ALWAYS KEEPING THIS UP TO 4694 03:23:11,859 --> 03:23:12,060 DATE. 4695 03:23:12,060 --> 03:23:15,396 I DO ENCOURAGE YOU TO VISIT THE 4696 03:23:15,396 --> 03:23:17,031 WEBSITE AND SHARE THEM WITH THE 4697 03:23:17,031 --> 03:23:17,999 RESEARCHERS AND ADMINISTRATOR 4698 03:23:17,999 --> 03:23:23,371 COMMUNITIES. 4699 03:23:23,371 --> 03:23:24,539 LOOKING INTO THE DATA STANDARDS 4700 03:23:24,539 --> 03:23:34,716 WEB PAGE. 4701 03:23:36,184 --> 03:23:37,218 WHEN WE SAW THE ASSESSMENT 4702 03:23:37,218 --> 03:23:38,453 THERE'S A NEED TO BETTER 4703 03:23:38,453 --> 03:23:39,721 DESCRIBE WHAT DATA STANDARDS ARE 4704 03:23:39,721 --> 03:23:41,723 AND WHY THEY'RE RELEVANT AND HOW 4705 03:23:41,723 --> 03:23:45,626 TO BE IMPLEMENTED. 4706 03:23:45,626 --> 03:23:47,562 ON THE PAGE WE PROVIDE AN 4707 03:23:47,562 --> 03:23:53,368 OVERVIEW AND MAINTAIN A RUNNING 4708 03:23:53,368 --> 03:24:01,709 LIST OF METADATA STANDARDS AND 4709 03:24:01,709 --> 03:24:04,045 MODELS AND THIS DEMONSTRATES OUR 4710 03:24:04,045 --> 03:24:06,514 DATA STANDARDS AND HOW THEY ARE 4711 03:24:06,514 --> 03:24:09,584 IMPLEMENTS ACROSS THE RESEARCH 4712 03:24:09,584 --> 03:24:10,051 AND DATA LIFE CYCLES. 4713 03:24:10,051 --> 03:24:11,352 ON THE RIGHT SIDE OF THE SLIDE 4714 03:24:11,352 --> 03:24:14,689 MY OFFICE OVERSEES THE NICHD 4715 03:24:14,689 --> 03:24:16,357 DATA AND SPECIMEN HUB. 4716 03:24:16,357 --> 03:24:18,793 AS MOST KNOW IT'S A CONTROLLED 4717 03:24:18,793 --> 03:24:20,628 ACCESS DATA REPOSITORY THAT 4718 03:24:20,628 --> 03:24:24,198 HELPS US SUPPORT DATA MANAGEMENT 4719 03:24:24,198 --> 03:24:25,900 SHARING COMPLIANT SHARING FOR 4720 03:24:25,900 --> 03:24:34,442 OUR NICHD STUDIES AND SPECIMEN 4721 03:24:34,442 --> 03:24:36,177 SHARING FOR A SUBSET. 4722 03:24:36,177 --> 03:24:40,415 I WAS DEVELOPED IN 2015 BY THE 4723 03:24:40,415 --> 03:24:45,720 DIVISION OF EXTRAMURAL RESEARCH 4724 03:24:45,720 --> 03:24:52,360 AND THE I.T. MANAGEMENT BRANCH 4725 03:24:52,360 --> 03:24:56,030 AND THIS IS A REMEMBER DATA 4726 03:24:56,030 --> 03:24:58,099 DICTIONARY THAT ENABLES 4727 03:24:58,099 --> 03:25:01,602 RESEARCHERS TO ANNOTATE THEIR 4728 03:25:01,602 --> 03:25:05,606 MEANINGS IN THEIR DATA SET IN A 4729 03:25:05,606 --> 03:25:06,841 MACHINE READABLE MANNER AND NAME 4730 03:25:06,841 --> 03:25:10,845 THE STANDARDS THEY USED IN DATA 4731 03:25:10,845 --> 03:25:12,180 COLLECTION OR HARMONIZATION AND 4732 03:25:12,180 --> 03:25:14,682 PROVIDE LINKS TO A WEBSITE OR 4733 03:25:14,682 --> 03:25:16,250 OTHER IDENTIFIER FOR THE 4734 03:25:16,250 --> 03:25:16,684 STANDARD. 4735 03:25:16,684 --> 03:25:21,155 THIS ALLOWS SECONDARY USERS TO 4736 03:25:21,155 --> 03:25:23,891 INTERPRET THE DATA SETS SHARED 4737 03:25:23,891 --> 03:25:29,730 UP DASH AND HARMONIZE WHEN 4738 03:25:29,730 --> 03:25:30,565 APPROPRIATE SHARED DATA SETS. 4739 03:25:30,565 --> 03:25:36,204 DASH IS ONE OF MANY DATA 4740 03:25:36,204 --> 03:25:37,171 REPOSITORIES WHERE EXTRAMURAL 4741 03:25:37,171 --> 03:25:41,876 AND INTRAMURAL RESEARCHERS SHARE 4742 03:25:41,876 --> 03:25:42,076 DATA. 4743 03:25:42,076 --> 03:25:46,247 WE'RE TRACKING ALL THE SYSTEMS 4744 03:25:46,247 --> 03:25:47,782 THAT ARE INTRAMURAL AND 4745 03:25:47,782 --> 03:25:48,549 EXTRAMURAL RESEARCHERS ARE 4746 03:25:48,549 --> 03:25:51,085 NAMING SO WE CAN DETECT PATTERNS 4747 03:25:51,085 --> 03:25:52,153 TO HELP PROVIDE BETTER GUIDANCE 4748 03:25:52,153 --> 03:25:54,455 TO OUR COMMUNITIES. 4749 03:25:54,455 --> 03:26:01,129 THE GRAPH HERE IS AN ANALYSIS 4750 03:26:01,129 --> 03:26:02,296 SUBMITTED FOR THE EXTRAMURAL 4751 03:26:02,296 --> 03:26:02,897 GRANT APPLICANTS. 4752 03:26:02,897 --> 03:26:05,266 WHAT YOU SEE ON THE Y AXIS ARE 4753 03:26:05,266 --> 03:26:07,902 EACH OF THE SYSTEMS NAMED IN THE 4754 03:26:07,902 --> 03:26:11,105 PLANS AND ON THE X AXIS IS THE 4755 03:26:11,105 --> 03:26:13,007 NUMBER OF PLANS THAT MENTION THE 4756 03:26:13,007 --> 03:26:15,009 GIVEN SYSTEM. 4757 03:26:15,009 --> 03:26:16,944 THE BARS ARE DIFFERENT BECAUSE 4758 03:26:16,944 --> 03:26:18,146 THERE'S AN ELEMENT OF THE PLAN 4759 03:26:18,146 --> 03:26:21,716 WE'RE SUPPOSED TO NAME THE 4760 03:26:21,716 --> 03:26:24,986 REPOSITORY AND NAME RESEARCHERS 4761 03:26:24,986 --> 03:26:26,387 IN THE PLAN WHICH GOES TO THE 4762 03:26:26,387 --> 03:26:30,158 INCONSISTENCY USING THE 4763 03:26:30,158 --> 03:26:30,558 TEMPLATE. 4764 03:26:30,558 --> 03:26:36,564 WE DO SEE THE ORANGE BAR 4765 03:26:36,564 --> 03:26:41,135 MENTIONS AND THE BLUE BAR IS 4766 03:26:41,135 --> 03:26:42,904 INCLUSIVE OF ELEMENT FOUR. 4767 03:26:42,904 --> 03:26:45,740 WE SEE GOOD PATTERNS IN 4768 03:26:45,740 --> 03:26:48,009 REPOSITORY USE. 4769 03:26:48,009 --> 03:26:50,411 MANY PLAN TO USE ESTABLISHED 4770 03:26:50,411 --> 03:26:52,346 DATA REPOSITORIREPOSITORIES. 4771 03:26:52,346 --> 03:26:56,284 WE'RE SEEING REPOSITORIES THAT 4772 03:26:56,284 --> 03:27:00,188 DON'T ALIGN WITH THE POLICY 4773 03:27:00,188 --> 03:27:02,123 WHICH POINTS TO A PUBLICATION OF 4774 03:27:02,123 --> 03:27:05,126 SCIENCE OF TECHNOLOGY POLICY ON 4775 03:27:05,126 --> 03:27:07,929 DESIRABLE CHARACTERISTICS OF 4776 03:27:07,929 --> 03:27:11,566 DATA REPOSITORIES FOR FEDERALRY 4777 03:27:11,566 --> 03:27:13,234 FUNDED RESEARCH. 4778 03:27:13,234 --> 03:27:17,238 WE ALL LOVE GITHUB BUT IT'S NOT 4779 03:27:17,238 --> 03:27:20,274 A DATA REPOSITORY. 4780 03:27:20,274 --> 03:27:22,243 IT DOES NOT HAVE DATA CURATION 4781 03:27:22,243 --> 03:27:24,579 PROCESSES OR A SEARCH INTERFACE 4782 03:27:24,579 --> 03:27:25,379 FOR FINDABILITY. 4783 03:27:25,379 --> 03:27:27,982 WE ALL LOVE PUB MED. 4784 03:27:27,982 --> 03:27:29,617 IT'S AN INTERNATIONALLY 4785 03:27:29,617 --> 03:27:30,585 RECOGNIZED RESOURCE FOR 4786 03:27:30,585 --> 03:27:33,387 SCIENTIFIC RESEARCHER AND NOT A 4787 03:27:33,387 --> 03:27:34,755 DATA REPOSITORY AND SHARING DATA 4788 03:27:34,755 --> 03:27:36,624 WITHIN PUBLICATIONS DOES NOT 4789 03:27:36,624 --> 03:27:38,226 ALIGN WITH THE SHARING POLICY 4790 03:27:38,226 --> 03:27:41,729 EXPECTATIONS AND THE DEFINITION 4791 03:27:41,729 --> 03:27:49,937 OF DATA SHARING. 4792 03:27:49,937 --> 03:27:56,844 TO SUCCESSFULLY IMPLEMENT OUR 4793 03:27:56,844 --> 03:28:00,014 SYSTEM WE HAVE TO ALIGN TO OUR 4794 03:28:00,014 --> 03:28:01,716 CHARACTERISTICS AND RESEARCHERS 4795 03:28:01,716 --> 03:28:05,219 NEED AND NEED TO CONNECT TO ONE 4796 03:28:05,219 --> 03:28:07,154 ANOTHER AND TO TOOLS. 4797 03:28:07,154 --> 03:28:10,992 I INTRODUCED OUR HUMAN-CENTERED 4798 03:28:10,992 --> 03:28:12,593 DESIGN APPROACH TO FILLING OUT 4799 03:28:12,593 --> 03:28:20,868 THE DATA ECO SYSTEM. 4800 03:28:20,868 --> 03:28:21,202 MA 4801 03:28:21,202 --> 03:28:21,802 HUMAN CENTERED DESIGNS ARE 4802 03:28:21,802 --> 03:28:24,572 ADDRESSING THE NEEDS. 4803 03:28:24,572 --> 03:28:27,375 WE WORKED WITH OUR WORKING GROUP 4804 03:28:27,375 --> 03:28:29,710 TO LOOK AT WHERE THEY'RE SHARING 4805 03:28:29,710 --> 03:28:32,313 DATA OR ACCESSING DATA FOR 4806 03:28:32,313 --> 03:28:35,483 SECONDARY USE AND DEVELOPED AND 4807 03:28:35,483 --> 03:28:37,485 IMPLEMENTED A REPOSITORY 4808 03:28:37,485 --> 03:28:39,420 ASSESSMENT PROTOCOL USING 4809 03:28:39,420 --> 03:28:40,988 METRICS AND FRAME WORKS TO 4810 03:28:40,988 --> 03:28:43,157 ASSESS EACH REPOSITORIES 4811 03:28:43,157 --> 03:28:44,659 ABILITIES TO SUPPORT THE DATA 4812 03:28:44,659 --> 03:28:47,094 MANAGEMENT AND SHARING POLICY TO 4813 03:28:47,094 --> 03:28:48,929 ENABLE USERABILITY OF THE DATA 4814 03:28:48,929 --> 03:28:51,732 AND LONG TERM SUSTAINABILITY AND 4815 03:28:51,732 --> 03:28:53,734 DOCUMENT THE DATA GOVERNANCE AND 4816 03:28:53,734 --> 03:28:56,304 SECURITY PROTOCOLS. 4817 03:28:56,304 --> 03:28:59,140 THIS INFORMATION IS HELPING MAKE 4818 03:28:59,140 --> 03:29:01,609 STRATEGIC DECISIONS ABOUT OUR 4819 03:29:01,609 --> 03:29:02,910 DATA SCIENCE AND SHARING 4820 03:29:02,910 --> 03:29:03,711 PROGRAMS. 4821 03:29:03,711 --> 03:29:06,414 IN PARALLEL TO OUR REPOSITORY 4822 03:29:06,414 --> 03:29:08,816 ASSESSMENT WE DEVELOPED, 4823 03:29:08,816 --> 03:29:10,284 IMPLEMENTED AND PUBLISHED A USER 4824 03:29:10,284 --> 03:29:13,087 STORY FORMAT WE'RE USING TO 4825 03:29:13,087 --> 03:29:16,090 COLLECT AND PRIORITIZE USER 4826 03:29:16,090 --> 03:29:18,492 STORIES FROM OUR NICHD 4827 03:29:18,492 --> 03:29:20,428 COMMUNITIES TO INFORM DESIGN. 4828 03:29:20,428 --> 03:29:23,698 WE SHARED TOOLS WITH OFFICES. 4829 03:29:23,698 --> 03:29:24,865 AND OF COURSE WE COORDINATE 4830 03:29:24,865 --> 03:29:27,702 AGAIN WITH THE NIH OFFICE OF 4831 03:29:27,702 --> 03:29:29,270 DATA SCIENCE STRATEGY AND 4832 03:29:29,270 --> 03:29:30,938 COLLEAGUES SO THAT WE IN OUR 4833 03:29:30,938 --> 03:29:33,741 COMMUNITIES CAN LEVERAGE OTHER 4834 03:29:33,741 --> 03:29:36,711 STANDA 4835 03:29:36,711 --> 03:29:41,716 STANDARDS, TOOLS AND TRAININGS 4836 03:29:41,716 --> 03:29:42,850 BEING DEVELOPED. 4837 03:29:42,850 --> 03:29:45,953 THE WORK WE NEED TO DO TO 4838 03:29:45,953 --> 03:29:46,854 ADDRESS MANY USER STORIES 4839 03:29:46,854 --> 03:29:48,923 INVOLVES THE DEVELOPMENT OF 4840 03:29:48,923 --> 03:29:52,059 THREE TYPES OF INTEROPERABILITY 4841 03:29:52,059 --> 03:29:53,894 ACROSS THE RELEVANT DATA 4842 03:29:53,894 --> 03:29:57,798 RESOURCES, GOVERNANCE, DATA AND 4843 03:29:57,798 --> 03:29:59,567 SYSTEM INTEROPERABILITY AND 4844 03:29:59,567 --> 03:30:03,371 RULES AND CONTROLS THAT DEFINE 4845 03:30:03,371 --> 03:30:04,438 DATA COLLECTION ACCESS, SHARING 4846 03:30:04,438 --> 03:30:09,377 AND LINKAGE AND USE. 4847 03:30:09,377 --> 03:30:12,847 GOVERNANCE INOPERABILITY IS TO 4848 03:30:12,847 --> 03:30:15,549 UNDERSTAND HOW DATA SETS COULD 4849 03:30:15,549 --> 03:30:16,217 BE INTEGRATED. 4850 03:30:16,217 --> 03:30:19,720 DATA INTEROPERABILITY GOES TO 4851 03:30:19,720 --> 03:30:21,989 CO-ANALYZE DATA FROM DIFFERENT 4852 03:30:21,989 --> 03:30:23,290 STUDIES BASED ON THE MEANING AND 4853 03:30:23,290 --> 03:30:25,292 STRUCTURE OF THE DATA AND 4854 03:30:25,292 --> 03:30:27,728 ACHIEVED THROUGH THE USE OF DATA 4855 03:30:27,728 --> 03:30:30,197 STANDARDS AT THE EARLY STAGES OF 4856 03:30:30,197 --> 03:30:32,566 DATA COLLECTION AND ALSO IN THE 4857 03:30:32,566 --> 03:30:33,234 DOCUMENTATION AND IMPLEMENTATION 4858 03:30:33,234 --> 03:30:38,639 OF A STANDARD OF SHARING DATA 4859 03:30:38,639 --> 03:30:38,973 REPOSITORIES. 4860 03:30:38,973 --> 03:30:43,244 DUE TO OTHER RESOURCES COULD BE 4861 03:30:43,244 --> 03:30:45,246 INTEROPERABLE THROUGH THE USE OF 4862 03:30:45,246 --> 03:30:45,746 WEB SERVICES AND OTHER 4863 03:30:45,746 --> 03:30:47,581 TECHNOLOGY STANDARDS THAT ALLOW 4864 03:30:47,581 --> 03:30:49,717 DATA SYSTEMS TO TALK TO ONE 4865 03:30:49,717 --> 03:30:50,684 ANOTHER ABOUT PEOPLE, THEIR 4866 03:30:50,684 --> 03:30:52,486 USERS AND THE DATA THEY HAVE AND 4867 03:30:52,486 --> 03:30:56,957 THE PROCESSES THEY ENABLE. 4868 03:30:56,957 --> 03:31:00,161 FOR EXAMPLE, WITH SYSTEM 4869 03:31:00,161 --> 03:31:02,430 INTEROPERABILITY A RESEARCHER 4870 03:31:02,430 --> 03:31:05,699 CAN MOVE AROUND AND GET DATA 4871 03:31:05,699 --> 03:31:08,202 FROM MULTIPLE REPOSITORIES INTO 4872 03:31:08,202 --> 03:31:12,072 A SINGLE COMPUTING ENVIRONMENT 4873 03:31:12,072 --> 03:31:13,707 FOR COLLABORATION BASED ON 4874 03:31:13,707 --> 03:31:14,842 SYSTEM INTEROPERABILITY 4875 03:31:14,842 --> 03:31:16,977 STANDARDS. 4876 03:31:16,977 --> 03:31:20,181 WE COMPLETED SEVERAL EFFORTS FOR 4877 03:31:20,181 --> 03:31:22,983 GOVERNANCE IN THE NICHD ECO 4878 03:31:22,983 --> 03:31:24,618 SYSTEM BASED ON THE USER 4879 03:31:24,618 --> 03:31:25,686 COMMUNITY NEEDS. 4880 03:31:25,686 --> 03:31:36,397 FOR THE REMAIN DDER OF THE TALK 4881 03:31:41,001 --> 03:31:42,169 I'LL TALK ABOUT THE HUMAN 4882 03:31:42,169 --> 03:31:45,940 CENTERED DESIGN. 4883 03:31:45,940 --> 03:31:48,008 IT'S TO COLLECT STORIES FROM 4884 03:31:48,008 --> 03:31:50,010 PARTICIPANTS, DEVELOPERS, POLICY 4885 03:31:50,010 --> 03:31:52,313 LEADERS AND OTHER NICHD 4886 03:31:52,313 --> 03:31:52,646 STAKEHOLDERS. 4887 03:31:52,646 --> 03:31:55,816 OUR USER STORIES ARE STRUCTURED 4888 03:31:55,816 --> 03:31:57,751 TO IDENTIFY THE USER, WHAT THEY 4889 03:31:57,751 --> 03:32:01,155 WANT TO DO, WHY, WHAT REAL OR 4890 03:32:01,155 --> 03:32:02,189 PERCEIVED BARRIERS EXIST AND 4891 03:32:02,189 --> 03:32:04,191 NEED TO BE NAVIGATED TO ACHIEVE 4892 03:32:04,191 --> 03:32:05,726 THEIR GOALS. 4893 03:32:05,726 --> 03:32:09,129 FOR EXAMPLE, IN ONE COVERT 4894 03:32:09,129 --> 03:32:12,600 RESEARCH EFFORT THE CLINICIAN 4895 03:32:12,600 --> 03:32:17,071 WANTED TO COMBINE DATA TYPES AND 4896 03:32:17,071 --> 03:32:20,774 AVOID WORKING WITH CONFLATED 4897 03:32:20,774 --> 03:32:24,278 SAMPLE SIZE AND LOOK AT GENOMIC 4898 03:32:24,278 --> 03:32:24,578 SEQUENCING. 4899 03:32:24,578 --> 03:32:26,247 WE ASKED USER TO TELL US WHY 4900 03:32:26,247 --> 03:32:27,715 THEY CAN'T ACHIEVE WHAT THEY 4901 03:32:27,715 --> 03:32:30,217 WANT TO DO AND ASKED THEM TO 4902 03:32:30,217 --> 03:32:32,553 SHARE THEIR GOAL TO CONSIDER 4903 03:32:32,553 --> 03:32:36,290 MULTIPLE SOLUTIONS TO ACHIEVE 4904 03:32:36,290 --> 03:32:38,058 THE GOAL AND PUBLISHED THE FIRST 4905 03:32:38,058 --> 03:32:41,662 ROUND OF THE ECO SYSTEM WORK ON 4906 03:32:41,662 --> 03:32:42,630 NIH GITHUB. 4907 03:32:42,630 --> 03:32:45,466 AND THIS INCLUDE USER STORIES 4908 03:32:45,466 --> 03:32:48,102 AND USE CASES AND CREATE 4909 03:32:48,102 --> 03:32:50,037 FUNCTIONAL REQUIREMENTS FOR NEW 4910 03:32:50,037 --> 03:32:55,276 WORK AND RELATED EFFORTS WE 4911 03:32:55,276 --> 03:32:57,444 COMPLETED TO MEET THOSE USER 4912 03:32:57,444 --> 03:33:01,715 STORIES OURSELVES OR WITH 4913 03:33:01,715 --> 03:33:02,917 COLLABORATORS. 4914 03:33:02,917 --> 03:33:06,253 WE DO SEE THE ECO SYSTEM WORK IS 4915 03:33:06,253 --> 03:33:07,688 GENERALLY APPLICABLE TO HIP 4916 03:33:07,688 --> 03:33:08,155 INSTITUTES AND THEIR 4917 03:33:08,155 --> 03:33:13,894 COMMUNITIES. 4918 03:33:13,894 --> 03:33:18,032 -- NIH INSTITUTES AND THEIR 4919 03:33:18,032 --> 03:33:19,934 COMMUNITIES AND IN SUPPORT OF 4920 03:33:19,934 --> 03:33:22,469 PEDIATRIC RESEARCH WE DETERMINED 4921 03:33:22,469 --> 03:33:24,538 PRIVACY PRESERVING LINKAGE COULD 4922 03:33:24,538 --> 03:33:27,908 BE IMPLEMENTED TO MEET THE 4923 03:33:27,908 --> 03:33:28,809 CLINICIANS STATED NEED. 4924 03:33:28,809 --> 03:33:32,913 THE TECHNOLOGY USES CRYPTOGRAPHY 4925 03:33:32,913 --> 03:33:34,315 TO ENCODE PARTICIPANT 4926 03:33:34,315 --> 03:33:36,417 INFORMATION SO THAT DATA SETS 4927 03:33:36,417 --> 03:33:37,718 ABOUT THE SAME PARTICIPANT CAN 4928 03:33:37,718 --> 03:33:42,089 BE LINKED WITHOUT REVEALING THE 4929 03:33:42,089 --> 03:33:42,723 PARTICIPANT'S PERSONAL 4930 03:33:42,723 --> 03:33:43,023 INFORMATION. 4931 03:33:43,023 --> 03:33:47,895 HOWEVER, WHILE THE TECHNOLOGY IS 4932 03:33:47,895 --> 03:33:48,662 RELATIVELY STRAIGHTFORWARD WE 4933 03:33:48,662 --> 03:33:50,197 FOUND GOVERNANCE CHALLENGES THAT 4934 03:33:50,197 --> 03:33:54,768 WARRANT A DEEPER DIVE ASSESSMENT 4935 03:33:54,768 --> 03:33:59,473 AND DEVELOPED A RECORD LINKAGE 4936 03:33:59,473 --> 03:34:02,610 IMPLEMENTATION CHECKLIST AFTER 4937 03:34:02,610 --> 03:34:04,678 LOOKING AT IMPLEMENTATIONS AND 4938 03:34:04,678 --> 03:34:05,980 DISTILLED TO IDENTIFY FIVE 4939 03:34:05,980 --> 03:34:07,047 GOVERNANCE AND THREE TECHNOLOGY 4940 03:34:07,047 --> 03:34:07,982 QUESTIONS THAT SHOULD BE 4941 03:34:07,982 --> 03:34:11,619 ADDRESSED BY A TEAM OF 4942 03:34:11,619 --> 03:34:15,155 RESEARCHERS AND DATA REPOSITORY 4943 03:34:15,155 --> 03:34:16,924 STEWARDS BEFORE PROVIDING WITH 4944 03:34:16,924 --> 03:34:19,226 LINKING AND USING LINK DATA FOR 4945 03:34:19,226 --> 03:34:20,160 RESEARCH. 4946 03:34:20,160 --> 03:34:21,729 THIS WORK TO DEVELOP THE 4947 03:34:21,729 --> 03:34:24,498 CHECKLIST WAS SUPPORT THE OFFICE 4948 03:34:24,498 --> 03:34:29,603 OF NIH DATA SCIENCE STRATEGY. 4949 03:34:29,603 --> 03:34:33,173 OUR SUBSEQUENT WORK IS NOW 4950 03:34:33,173 --> 03:34:34,808 FUNDED BY THE HHS PATIENT 4951 03:34:34,808 --> 03:34:36,610 CENTERED OUTCOMES RESEARCH TRUST 4952 03:34:36,610 --> 03:34:38,846 FUND. 4953 03:34:38,846 --> 03:34:41,615 ONCE WE DEVELOPED THIS WE WERE 4954 03:34:41,615 --> 03:34:45,185 ABLE TO DEMONSTRATE THE UTILITY 4955 03:34:45,185 --> 03:34:46,320 TO ADDRESS ANOTHER HIGH PRIORITY 4956 03:34:46,320 --> 03:34:48,856 NICHD USER STORY FOR DATA 4957 03:34:48,856 --> 03:34:51,325 LINKAGE FROM OUR COLLEAGUES AT 4958 03:34:51,325 --> 03:34:52,926 THE INCLUDE DATA COORDINATING 4959 03:34:52,926 --> 03:34:53,227 CENTER. 4960 03:34:53,227 --> 03:34:58,132 THERE WERE RESEARCH WITHIN THE 4961 03:34:58,132 --> 03:34:59,833 NICHD/NHLBI CO-LED 4962 03:34:59,833 --> 03:35:00,601 INFRASTRUCTURE FOR THE 4963 03:35:00,601 --> 03:35:01,802 INITIATIVE ON CRITICAL HEALTH 4964 03:35:01,802 --> 03:35:03,604 AND QUALITY OF LIFE NEEDS FOR 4965 03:35:03,604 --> 03:35:06,373 INDIVIDUALS WITH DOWNS SYNDROME. 4966 03:35:06,373 --> 03:35:08,976 THE INCLUDE STAKEHOLDERS WORKED 4967 03:35:08,976 --> 03:35:12,012 THROUGH EACH OF THE EIGHT 4968 03:35:12,012 --> 03:35:14,281 CHECKLIST ITEMS TO LINK DATA 4969 03:35:14,281 --> 03:35:18,619 SETS ACROSS THE DATA 4970 03:35:18,619 --> 03:35:19,787 REPOSITORIES. 4971 03:35:19,787 --> 03:35:20,988 THEY DETERMINED THE SCOPE AND 4972 03:35:20,988 --> 03:35:29,029 WHICH DATA SITS WOULD BE LINKED. 4973 03:35:29,029 --> 03:35:33,300 THEY DETERMINED TO THEY NEDDED 4974 03:35:33,300 --> 03:35:37,037 TO GAIN APPROVAL AND IT WOULD BE 4975 03:35:37,037 --> 03:35:39,973 BASED ON CONSENT AT NIH AND 4976 03:35:39,973 --> 03:35:48,782 PROGRAM PROVIDE APPROVAL. 4977 03:35:48,782 --> 03:35:51,785 AND THERE'S SPECIFIC POLICIES 4978 03:35:51,785 --> 03:35:55,789 RELATED TO THE PARTICIPANT 4979 03:35:55,789 --> 03:35:59,359 POPULATIONS AND THE POLICY CAME 4980 03:35:59,359 --> 03:36:01,895 UP AS WELL AS CONSENT BASED DATA 4981 03:36:01,895 --> 03:36:03,964 USE AND OTHER POLICIES THEY WERE 4982 03:36:03,964 --> 03:36:06,300 ABLE TO IDENTIFY AND THEN 4983 03:36:06,300 --> 03:36:11,205 DECIDED BASED ON THE ORDER. 4984 03:36:11,205 --> 03:36:12,606 WE LEARNED ABOUT WHAT RULES AND 4985 03:36:12,606 --> 03:36:15,442 POLICIES ARE ASSOCIATED AND NOW 4986 03:36:15,442 --> 03:36:17,711 DECIDE WHO SHOULD LINK THEIR 4987 03:36:17,711 --> 03:36:18,979 DATA AND DETERMINE RESEARCHERS 4988 03:36:18,979 --> 03:36:20,514 SHOULD BE ABLE TO LINK THE DATA 4989 03:36:20,514 --> 03:36:21,548 AND LEADS TO THE CONTROLS THEY 4990 03:36:21,548 --> 03:36:23,684 DECIDED TO PUT INTO PLACE TO 4991 03:36:23,684 --> 03:36:26,520 MITIGATE THE RISK WHICH IS THE 4992 03:36:26,520 --> 03:36:33,527 LINKAGES WOULD BE SHARED AFTER 4993 03:36:33,527 --> 03:36:35,429 APPROVAL AND PROHIBIT 4994 03:36:35,429 --> 03:36:37,698 REIDENTIFICATION AND THE DATA 4995 03:36:37,698 --> 03:36:40,834 SETS ARE SHARED FOLLOWING THE 4996 03:36:40,834 --> 03:36:41,101 PROTOCOLS. 4997 03:36:41,101 --> 03:36:41,902 THE TECHNOLOGY CONSIDERATIONS 4998 03:36:41,902 --> 03:36:43,270 ARE SIMPLER. 4999 03:36:43,270 --> 03:36:45,405 IF YOU LOOK THROUGH THE THREE 5000 03:36:45,405 --> 03:36:49,510 CHECKLIST ITEMS WHAT'S NEEDED IS 5001 03:36:49,510 --> 03:36:52,045 FOR THE SITES TO POST PERSONALLY 5002 03:36:52,045 --> 03:36:53,714 IDENTIFIABLE INFORMATION AND THE 5003 03:36:53,714 --> 03:36:55,682 TECHNOLOGY NEEDS TO MEET BASIC 5004 03:36:55,682 --> 03:36:56,784 REQUIREMENT FOR WHAT WAS 5005 03:36:56,784 --> 03:36:58,452 MENTIONED AND THE TOOLS SHOULD 5006 03:36:58,452 --> 03:36:59,419 BE SUSTAINABLE. 5007 03:36:59,419 --> 03:37:02,022 WE DON'T WANT TO LINK ON A TOOL 5008 03:37:02,022 --> 03:37:05,292 THAT GOES AWAY AND THE NIMHD 5009 03:37:05,292 --> 03:37:06,393 DATA ARCHIVES MEET ALL THESE AND 5010 03:37:06,393 --> 03:37:10,230 IS A LONG-RUNNING GOVERNMENT 5011 03:37:10,230 --> 03:37:12,466 OWNED AND OPERATED PRIVACY 5012 03:37:12,466 --> 03:37:13,700 PRESERVING RECORD AND MET THE 5013 03:37:13,700 --> 03:37:15,035 CONSIDERATIONS AND NOW IS BEING 5014 03:37:15,035 --> 03:37:17,838 USED TO LINK THE DATA ACROSS THE 5015 03:37:17,838 --> 03:37:23,410 INCLUDE DATA REPOSITORIES. 5016 03:37:23,410 --> 03:37:25,679 WE'VE HEARD FROM OUR RESEARCHERS 5017 03:37:25,679 --> 03:37:28,549 AND ALSO FROM OUR STAFF THEY 5018 03:37:28,549 --> 03:37:29,783 WANT TO BE ABLE TO EASILY FIND 5019 03:37:29,783 --> 03:37:32,953 BEST DATA REPOSITORIES FOR 5020 03:37:32,953 --> 03:37:34,221 COMPLYING WITH THE DATA SHARING 5021 03:37:34,221 --> 03:37:36,290 POLICY OR REVIEWING DATA 5022 03:37:36,290 --> 03:37:39,993 MANAGEMENT SHARING PLANS AND 5023 03:37:39,993 --> 03:37:41,261 VERIFYING RESEARCHERS USE 5024 03:37:41,261 --> 03:37:42,162 REPOSITORIES FOR THE DATA THEY 5025 03:37:42,162 --> 03:37:43,530 PLAN TO SHARE. 5026 03:37:43,530 --> 03:37:45,566 WE DEVELOPED THE DATA REPOSITORY 5027 03:37:45,566 --> 03:37:47,601 FINDER USING SOME OF THE 5028 03:37:47,601 --> 03:37:48,969 INFORMATION WE WERE PULLING OUT 5029 03:37:48,969 --> 03:37:50,737 OF OUR REPOSITORY ASSESSMENT. 5030 03:37:50,737 --> 03:37:53,974 IT'S A USER-FRIENDLY TOOLS THAT 5031 03:37:53,974 --> 03:37:55,809 ALLOWS RESEARCHERS TO SEARCH FOR 5032 03:37:55,809 --> 03:37:58,278 REPOSITORIES BY THE FACETS OF 5033 03:37:58,278 --> 03:38:00,547 THE DATA MANAGEMENT SHARING PLAN 5034 03:38:00,547 --> 03:38:04,218 TO NOT ONLY IDENTIFY 5035 03:38:04,218 --> 03:38:06,053 REPOSITORIES APPROPRIATE FOR THE 5036 03:38:06,053 --> 03:38:07,754 DATA AND SHARING THE PLANS 5037 03:38:07,754 --> 03:38:10,123 EASILY WITHOUT SEARCHING FOR THE 5038 03:38:10,123 --> 03:38:10,991 INFORMATION ON VARIOUS 5039 03:38:10,991 --> 03:38:13,026 REPOSITORY WEBSITES. 5040 03:38:13,026 --> 03:38:15,395 IT'S A RESEARCH ACTIVELY USED BY 5041 03:38:15,395 --> 03:38:25,906 RESEARCHER AND STAFF MEETINGS. 5042 03:38:27,541 --> 03:38:28,876 OUR RESEARCHERS ALREADY SHARE 5043 03:38:28,876 --> 03:38:31,478 LARGE VOLUMES OF DATA AND HUMAN 5044 03:38:31,478 --> 03:38:38,018 DERIVED GEENOMICS AND OTHERS DAA 5045 03:38:38,018 --> 03:38:39,820 AND THERE'S THE DATA HUB AND THE 5046 03:38:39,820 --> 03:38:42,422 KIDS FIRST DATA RESEARCH CENTER 5047 03:38:42,422 --> 03:38:43,724 AND THE SEQUENCE ARCHIVE TO 5048 03:38:43,724 --> 03:38:46,593 ADDRESS THE USER STORY TO ACCESS 5049 03:38:46,593 --> 03:38:49,062 AND COLLABORATIVE AREALLY 5050 03:38:49,062 --> 03:38:52,099 CO-ANALYZE THE DATA SETS FROM 5051 03:38:52,099 --> 03:38:54,401 THE REPOSITORIES WE WORKED WITH 5052 03:38:54,401 --> 03:38:57,704 THE TEAMS FROM EACH TO BUILD 5053 03:38:57,704 --> 03:38:59,139 STANDARDS BASED INTEROPERABILITY 5054 03:38:59,139 --> 03:39:03,977 TO RESEARCHERS CAN LOG INTO ONE 5055 03:39:03,977 --> 03:39:06,280 CLOUD BASED WORK SPACE AND PULL 5056 03:39:06,280 --> 03:39:08,849 IN DATA SETS AUTHORIZED TO 5057 03:39:08,849 --> 03:39:14,588 ACCESS FROM THE THREE DATA 5058 03:39:14,588 --> 03:39:20,027 REPOSITORIES ELIMINATING THE 5059 03:39:20,027 --> 03:39:22,529 NEED THE WORK SPACE AND THIS LED 5060 03:39:22,529 --> 03:39:26,099 TO A STANDARD AND EACH VERIFY 5061 03:39:26,099 --> 03:39:30,103 THE ACCESS PERMISSIONS AND THE 5062 03:39:30,103 --> 03:39:32,839 DATA REPOSITORY SERVICE FROM THE 5063 03:39:32,839 --> 03:39:35,509 GENOMICS AND HEALTH FOR SHARING 5064 03:39:35,509 --> 03:39:39,279 GENOMIC STUDY AND THE RESOURCE 5065 03:39:39,279 --> 03:39:41,648 COMING OUT OF THE HHS LED 5066 03:39:41,648 --> 03:39:42,049 EXCHANGE STANDARD. 5067 03:39:42,049 --> 03:39:45,185 SO WHERE IS THIS ALL GOING. 5068 03:39:45,185 --> 03:39:49,189 OUR ULTIMATE VISION IS TO 5069 03:39:49,189 --> 03:39:52,993 DEVELOP A BLUEPRINT TO GUIDE 5070 03:39:52,993 --> 03:39:55,195 BEST PRACTICES FOR REPOSITORIES 5071 03:39:55,195 --> 03:39:59,299 AND SYSTEMS TO MEET THE NEEDS OF 5072 03:39:59,299 --> 03:40:00,767 THE COMMUNITY AND AIM TO PROVIDE 5073 03:40:00,767 --> 03:40:03,670 THIS TO RESEARCHERS AND STEWARDS 5074 03:40:03,670 --> 03:40:04,871 TO ACCELERATE AND STANDARDIZE 5075 03:40:04,871 --> 03:40:06,640 WHERE POSSIBLE NEW WORK TO 5076 03:40:06,640 --> 03:40:09,042 BUILD, ENHANCE AND CONNECT DATA 5077 03:40:09,042 --> 03:40:09,776 SYSTEMS. 5078 03:40:09,776 --> 03:40:12,212 AS WE COMPLETE THE EFFORTS I 5079 03:40:12,212 --> 03:40:13,814 DESCRIBED TODAY WE WILL CONTINUE 5080 03:40:13,814 --> 03:40:17,985 TO WORK ON NEWER EFFORTS SO EACH 5081 03:40:17,985 --> 03:40:20,887 IS INFORMED WHERE POSSIBLE BY 5082 03:40:20,887 --> 03:40:22,089 EXISTING STANDARDS AND POLICIES 5083 03:40:22,089 --> 03:40:23,457 AND HELPS UNDERSTAND WHERE THE 5084 03:40:23,457 --> 03:40:25,292 STANDARDS AND POLICIES MIGHT 5085 03:40:25,292 --> 03:40:26,660 MAKE IT INTO THE BLUEPRINT WE 5086 03:40:26,660 --> 03:40:28,495 SHARE AS A JUST DESCRIBED. 5087 03:40:28,495 --> 03:40:31,932 THESE ARE SOME OF OUR NEW 5088 03:40:31,932 --> 03:40:33,967 PROJECTS ARE A PROTOTYPE AND 5089 03:40:33,967 --> 03:40:36,069 READINESS AND ANALYSIS OF 5090 03:40:36,069 --> 03:40:38,372 REPOSITORIES AND THE DEVELOPMENT 5091 03:40:38,372 --> 03:40:44,978 TO SUPPORT INTEROPERABILITY. 5092 03:40:44,978 --> 03:40:47,247 TRUE IT'S A JOURNEY TO IMPLEMENT 5093 03:40:47,247 --> 03:40:50,083 THE POLICY AND ACHIEVE THE FULL 5094 03:40:50,083 --> 03:40:51,485 VALUE OF RESPONSIBLE DATA 5095 03:40:51,485 --> 03:40:53,720 SHARING AND USE AND HEARD WHY 5096 03:40:53,720 --> 03:40:54,087 IT'S IMPORTANT. 5097 03:40:54,087 --> 03:40:56,089 I DESCRIBED KEY PROGRESS IN OUR 5098 03:40:56,089 --> 03:40:58,625 JOURNEY WE'RE ABLE TO MAKE WITH 5099 03:40:58,625 --> 03:41:00,127 OUR ONE NICHD APPROACH AND WILL 5100 03:41:00,127 --> 03:41:01,862 CONTINUE TO BUILD OUT CAPACITY 5101 03:41:01,862 --> 03:41:04,531 FOR DATA SHARING AND USE ACROSS 5102 03:41:04,531 --> 03:41:07,667 THE RESEARCH LIFE CYCLE. 5103 03:41:07,667 --> 03:41:08,568 IN THE INTEREST OF TIME I'LL 5104 03:41:08,568 --> 03:41:11,104 JUMP TO SAY WE'LL CONTINUE TO 5105 03:41:11,104 --> 03:41:11,872 SHARE RESEARCHER NEEDS AND 5106 03:41:11,872 --> 03:41:13,607 COLLABORATE ON NEW EFFORTS WITH 5107 03:41:13,607 --> 03:41:14,608 THE OFFICE OF THE DIRECTOR 5108 03:41:14,608 --> 03:41:17,644 COLLEAGUES NOT JUST ODSS BUT 5109 03:41:17,644 --> 03:41:19,579 SCIENCE POLICY AND EXTRAMURAL 5110 03:41:19,579 --> 03:41:21,715 RESEARCH AND WE'LL CONTINUE TO 5111 03:41:21,715 --> 03:41:22,682 COLLECT RESEARCHER AND COMMUNITY 5112 03:41:22,682 --> 03:41:24,651 USER STORIES TO INFORM ALL THE 5113 03:41:24,651 --> 03:41:25,052 WORK WE DO. 5114 03:41:25,052 --> 03:41:26,186 THANK YOU VERY MUCH AND I LOOK 5115 03:41:26,186 --> 03:41:36,630 FORWARD TO YOUR FEEDBACK. 5116 03:41:42,369 --> 03:41:44,604 >> REBECCA SAYS WE CAN TAKE ONE 5117 03:41:44,604 --> 03:41:44,971 QUESTION 5118 03:41:44,971 --> 03:41:46,206 >> DAMIEN. 5119 03:41:46,206 --> 03:41:49,576 >> THIS IS FANTASTIC ALL THE 5120 03:41:49,576 --> 03:41:55,115 WORK DONE AND TRYING TO 5121 03:41:55,115 --> 03:41:56,149 INTEGRATE ACROSS THE 5122 03:41:56,149 --> 03:41:58,351 COMPLEXITIES THAT ARE REALLY 5123 03:41:58,351 --> 03:41:58,552 HIGH. 5124 03:41:58,552 --> 03:42:01,421 THE ONE QUESTION I HAVE IS 5125 03:42:01,421 --> 03:42:06,626 LOOKING AT THE CURRENT DATA 5126 03:42:06,626 --> 03:42:09,529 MANAGEMENT PLANS AND RELATIVE TO 5127 03:42:09,529 --> 03:42:12,699 THE BUILD OUT OF STANDARDS, 5128 03:42:12,699 --> 03:42:16,970 COMMON REPOSITORIES LINKED, THE 5129 03:42:16,970 --> 03:42:21,575 LIST OF INFORMATION SEEMS TO 5130 03:42:21,575 --> 03:42:23,110 PRIMITIVE IN KNOWLEDGE BASED ON 5131 03:42:23,110 --> 03:42:29,182 THE USERS AND NOT REALLY DATA 5132 03:42:29,182 --> 03:42:30,684 PLATFO 5133 03:42:30,684 --> 03:42:33,620 PLATFO 5134 03:42:33,620 --> 03:42:34,387 PLATFORMS AND WHAT IS THE 5135 03:42:34,387 --> 03:42:35,822 EDUCATION PART TO GET THEM IN 5136 03:42:35,822 --> 03:42:37,724 THE NEW SYSTEM? 5137 03:42:37,724 --> 03:42:40,894 IT SEEMS LIKE A MISMATCH BETWEEN 5138 03:42:40,894 --> 03:42:43,363 WHAT PEOPLE THINK THEY KNOW 5139 03:42:43,363 --> 03:42:45,098 ABOUT DATA MANAGEMENT AND WHERE 5140 03:42:45,098 --> 03:42:46,666 YOU'RE TRYING TO TAKE THEM. 5141 03:42:46,666 --> 03:42:51,204 >> I DON'T THINK IT'S A HUGE 5142 03:42:51,204 --> 03:42:51,571 MISMATCH. 5143 03:42:51,571 --> 03:42:54,040 I DO ACKNOWLEDGE IT'S A JOURNEY 5144 03:42:54,040 --> 03:42:56,409 BUT WE'RE SEEING RESEARCHERS 5145 03:42:56,409 --> 03:42:59,112 USING THE DATA REPOSITORIES. 5146 03:42:59,112 --> 03:43:01,848 THEY'RE HUBS OF COMMUNITY. 5147 03:43:01,848 --> 03:43:02,916 ACTIVITY WHERE RESEARCH 5148 03:43:02,916 --> 03:43:04,684 COMMUNITIES ARE DEVELOPING AND 5149 03:43:04,684 --> 03:43:06,987 USING AND SHARING STANDARDS. 5150 03:43:06,987 --> 03:43:09,356 SO BY GOING TO THOSE 5151 03:43:09,356 --> 03:43:16,129 REPOSITORIES THEY CAN FIND OUT 5152 03:43:16,129 --> 03:43:17,931 MORE TO BE USED UPSTREAM. 5153 03:43:17,931 --> 03:43:19,065 WE HAVE MANY COMMUNITIES DOING 5154 03:43:19,065 --> 03:43:20,066 THIS A LONG TIME. 5155 03:43:20,066 --> 03:43:22,869 THE GENOMICS DATA SHARING POLICY 5156 03:43:22,869 --> 03:43:24,638 HAS BEEN IN EFFECT A DECADE. 5157 03:43:24,638 --> 03:43:28,108 I KNOW WE NEED TO ENHANCE THE 5158 03:43:28,108 --> 03:43:30,143 CAPACITY OF OUR ECO SYSTEM BUT 5159 03:43:30,143 --> 03:43:32,646 DON'T SEE THAT MUCH OF A 5160 03:43:32,646 --> 03:43:33,013 MISMATCH. 5161 03:43:33,013 --> 03:43:35,215 WE'RE LOOKING AT WHERE WE SEE 5162 03:43:35,215 --> 03:43:37,717 THE ISSUES AND ADVISING ON 5163 03:43:37,717 --> 03:43:38,952 SPECIFIC DETAILS TO BETTER MATCH 5164 03:43:38,952 --> 03:43:41,688 BUT AGAIN WE'RE NOT SEEING A 5165 03:43:41,688 --> 03:43:42,689 HUGE GOAL BETWEEN WHAT'S COMING 5166 03:43:42,689 --> 03:43:47,060 IN ON THE PLANS AND WHAT IS YET 5167 03:43:47,060 --> 03:43:47,661 TO BE UTILIZED IN THE DATA 5168 03:43:47,661 --> 03:43:47,894 SHARING. 5169 03:43:47,894 --> 03:43:51,164 DID I GET TO THE QUESTION? 5170 03:43:51,164 --> 03:43:54,167 >> I THINK SO. 5171 03:43:54,167 --> 03:43:58,905 YOU HIGHLIGHTED ON THE LIST OF 5172 03:43:58,905 --> 03:44:02,576 ALL THE REPOSITORIES FOLKS WERE 5173 03:44:02,576 --> 03:44:06,146 LISTENING WHICH AREN'T 5174 03:44:06,146 --> 03:44:06,479 REPOSITORIES. 5175 03:44:06,479 --> 03:44:07,581 . 5176 03:44:07,581 --> 03:44:10,884 >> SOME ARE AND SOME AREN'T. 5177 03:44:10,884 --> 03:44:12,686 . 5178 03:44:12,686 --> 03:44:14,888 >> YOU HIGHLIGHTED THAT. 5179 03:44:14,888 --> 03:44:19,526 MANY THE MAJORITY LOOKED LIKE 5180 03:44:19,526 --> 03:44:27,234 THEY WEREN'T REPOSITORY. 5181 03:44:27,234 --> 03:44:29,703 >> THAT'S WHY WE BUILT THE DATA 5182 03:44:29,703 --> 03:44:30,704 REPOSITORY FINDER AND BASED ON 5183 03:44:30,704 --> 03:44:34,241 WHAT WE'RE HEARING FROM STAFF 5184 03:44:34,241 --> 03:44:36,576 AND RESEARCHERS AND THOSE THAT 5185 03:44:36,576 --> 03:44:40,146 DON'T KNOW CAN LOOK TO THAT AND 5186 03:44:40,146 --> 03:44:41,548 IDENTIFY IT. 5187 03:44:41,548 --> 03:44:43,316 >> I THINK THE POINT YOU'RE 5188 03:44:43,316 --> 03:44:47,621 MAKING AND IT MAY BE AN NIH WIDE 5189 03:44:47,621 --> 03:44:50,657 ISSUE AND MANY ARE NODDING 5190 03:44:50,657 --> 03:44:51,291 BECAUSE IT'S PROBABLY AN NIH 5191 03:44:51,291 --> 03:44:55,328 WIDE ISSUE. 5192 03:44:55,328 --> 03:44:57,564 THERE'S A COUPLE THINGS THERE 5193 03:44:57,564 --> 03:45:00,700 AND PROBABLY SOMETHING NICHD IS 5194 03:45:00,700 --> 03:45:02,535 PROBABLY FURTHER AHEAD ON THAN 5195 03:45:02,535 --> 03:45:02,869 OTHERS. 5196 03:45:02,869 --> 03:45:05,572 WE ENGAGED IN BUILDING COMMON 5197 03:45:05,572 --> 03:45:09,943 DATA ELEMENTS AND ENGAGED IN 5198 03:45:09,943 --> 03:45:13,613 CURATING ONTOLOGIES AND GETTING 5199 03:45:13,613 --> 03:45:14,481 REPOSITORIES BETTER AND SOME 5200 03:45:14,481 --> 03:45:16,883 DON'T HAVE ANY THEY CAN USE THAT 5201 03:45:16,883 --> 03:45:21,721 IS LIMITED. 5202 03:45:21,721 --> 03:45:32,265 THE OTHER PIECE IS THAT AND IN 5203 03:45:33,800 --> 03:45:35,335 SOME VENUES WE'RE TRYING TO PUSH 5204 03:45:35,335 --> 03:45:38,938 MORE TO GET TO EDUCATION, 5205 03:45:38,938 --> 03:45:42,575 STANDARDS, ONTOLOGIES, CDEs. 5206 03:45:42,575 --> 03:45:44,277 WE TRY TO SHAPE THIS THROUGH THE 5207 03:45:44,277 --> 03:45:49,716 WAY WE INTERACT ACROSS THE NIH 5208 03:45:49,716 --> 03:45:52,152 TO GET TO BETTER SUSTAINABLE 5209 03:45:52,152 --> 03:45:55,088 DATA ECO SYSTEM THAT ALLOWS FOR 5210 03:45:55,088 --> 03:45:56,556 SECONDARY DATA USE AND LINKAGE. 5211 03:45:56,556 --> 03:45:59,225 WE STILL NEED TO GO MORE WORK 5212 03:45:59,225 --> 03:46:00,694 AND SOMETHING I THINK 5213 03:46:00,694 --> 03:46:01,661 DR. BERTAGNOLLI HAS SAID OVER 5214 03:46:01,661 --> 03:46:02,962 AND OVER AND OVER AGAIN. 5215 03:46:02,962 --> 03:46:08,535 WE NEED TO BE A LEADER IN BIO 5216 03:46:08,535 --> 03:46:12,706 INFORMATICS AND CONTINUE THE 5217 03:46:12,706 --> 03:46:17,711 TENURE IS A FOCUS FOR HER. 5218 03:46:17,711 --> 03:46:18,878 TO EMPHASIZE AND WE'RE BUILDING 5219 03:46:18,878 --> 03:46:20,714 WHAT WE CAN AT THE NIH WIDE 5220 03:46:20,714 --> 03:46:23,350 LEVEL I THINK WE CAN DO MORE. 5221 03:46:23,350 --> 03:46:25,518 >> THAT GOES BACK TO MY POINT. 5222 03:46:25,518 --> 03:46:29,389 EVERYTHING WE DO WE SHARE WITH 5223 03:46:29,389 --> 03:46:32,092 NIH BROADLY SO ACHIEVE AN 5224 03:46:32,092 --> 03:46:32,559 ECONOMY OF SCALE. 5225 03:46:32,559 --> 03:46:35,028 WE'RE SEEING REPOSITORIES EXIST. 5226 03:46:35,028 --> 03:46:36,696 WE JUST NEED THE EDUCATIONAL 5227 03:46:36,696 --> 03:46:37,530 COMPONENT OUT TO THE COMMUNITY 5228 03:46:37,530 --> 03:46:42,569 AND BRING RESEARCHERS TO THE 5229 03:46:42,569 --> 03:46:43,770 REPOSITORIES AND THE DASH 5230 03:46:43,770 --> 03:46:44,804 SUBMISSION WEB PAGE IS A GOOD 5231 03:46:44,804 --> 03:46:46,473 EXAMPLE WHERE WE SET UP ONE 5232 03:46:46,473 --> 03:46:48,675 PANEL FOR RESEARCHERS TO GO AND 5233 03:46:48,675 --> 03:46:50,744 SAY THIS IS WHAT IT MEANS TO 5234 03:46:50,744 --> 03:46:52,178 PREPARE DATA FOR SHARING IN 5235 03:46:52,178 --> 03:46:52,512 DASH. 5236 03:46:52,512 --> 03:46:53,713 THIS IS THE CODE BOOK AND HOW I 5237 03:46:53,713 --> 03:46:56,282 DO IT AND HOW I POINT TO 5238 03:46:56,282 --> 03:46:56,549 STANDARDS. 5239 03:46:56,549 --> 03:47:00,286 WE WANT THE NUCLEI OF BEST 5240 03:47:00,286 --> 03:47:03,022 PRACTICES IN THE DATA 5241 03:47:03,022 --> 03:47:07,894 REPOSITORIES THAT DO EXIST. 5242 03:47:07,894 --> 03:47:10,864 >> THANK YOU, REBECCA FOR YOUR 5243 03:47:10,864 --> 03:47:11,798 PRESENTATION AND WORK IN LEADING 5244 03:47:11,798 --> 03:47:12,899 THE OFFICE OF DATA SCIENCE AND 5245 03:47:12,899 --> 03:47:17,637 SHARING. 5246 03:47:17,637 --> 03:47:21,408 NOW DR. RASOOLY HAS INSTRUCTIONS 5247 03:47:21,408 --> 03:47:26,413 FOR OUR COUNCIL MEMBERS BRA -- 5248 03:47:26,413 --> 03:47:27,847 BEFORE I TAKE MY NEXT BREAK. 5249 03:47:27,847 --> 03:47:32,118 WE'LL TAKE A BREAK TO ABOUT 3:00 5250 03:47:32,118 --> 03:47:36,723 THIS AFTERNOON BUT BEFORE YOU 5251 03:47:36,723 --> 03:47:39,692 LED FOR COFFEE OR BIO BREAK FOR 5252 03:47:39,692 --> 03:47:43,029 THE FIRST TIME WE'RE GOING TO 5253 03:47:43,029 --> 03:47:44,297 TAKE A COUNCIL PICTURE. 5254 03:47:44,297 --> 03:47:46,065 THE PHOTOGRAPHER IS HERE AND SET 5255 03:47:46,065 --> 03:47:48,902 UP AND READY. 5256 03:47:48,902 --> 03:47:50,203 PLEASE DO THAT AND THEN WE'LL 5257 03:47:50,203 --> 03:48:00,547 ADJOURN TO A BREAK. 5258 03:48:10,713 --> 03:48:11,214 >> OKAY. 5259 03:48:11,214 --> 03:48:18,054 PLEASE TAKE YOUR SEATS. 5260 03:48:18,054 --> 03:48:19,088 WE'RE APPROACHING THE HOME 5261 03:48:19,088 --> 03:48:19,322 STRETCH. 5262 03:48:19,322 --> 03:48:24,594 I KNOW IT'S BEEN A LONG DAY. 5263 03:48:24,594 --> 03:48:29,432 THANK YOU. 5264 03:48:29,432 --> 03:48:31,134 NOW WE'RE GOING TO HEAR A REPORT 5265 03:48:31,134 --> 03:48:33,736 FROM TWO WORKING GROUPS OF 5266 03:48:33,736 --> 03:48:34,237 COUNCIL. 5267 03:48:34,237 --> 03:48:35,771 FIRST WE'LL HEAR FROM THE 5268 03:48:35,771 --> 03:48:39,375 PREGNANT WOMEN AND LACTATING 5269 03:48:39,375 --> 03:48:43,379 WOMEN OR PRGLAC IMPLEMENTATION 5270 03:48:43,379 --> 03:48:44,013 WORKING GROUP. 5271 03:48:44,013 --> 03:48:46,849 WE ESTABLISHED THE GROUP IN 2023 5272 03:48:46,849 --> 03:48:50,953 TO MONITOR AND REPORT ON THE 5273 03:48:50,953 --> 03:48:52,488 IMPLEMENTATION OF THE 5274 03:48:52,488 --> 03:48:53,823 RECOMMENDATIONS FOR IMPROVING 5275 03:48:53,823 --> 03:48:55,391 FROTH AND RESEARCH ON SAFE AND 5276 03:48:55,391 --> 03:48:58,461 EFFECTIVE THERAPEUTICS FOR 5277 03:48:58,461 --> 03:49:00,229 PREGNANT AND LACTATING PEOPLE. 5278 03:49:00,229 --> 03:49:03,166 THE RECOMMENDATIONS CAME FROM 5279 03:49:03,166 --> 03:49:04,767 THE CONGRESSIONALLY MANDATED 5280 03:49:04,767 --> 03:49:07,370 PRGLAC WHICH WAS LED BY NICHD 5281 03:49:07,370 --> 03:49:10,473 AND ESTABLISHED AS PART OF THE 5282 03:49:10,473 --> 03:49:13,910 21st CENTURIES CURES ACT. 5283 03:49:13,910 --> 03:49:16,045 THE IMPLEMENTATION WORK GROUP OF 5284 03:49:16,045 --> 03:49:17,780 COUNCIL IS FOCUSSED ON PUTTING 5285 03:49:17,780 --> 03:49:19,282 THOSE IMPLEMENTATIONS INTO 5286 03:49:19,282 --> 03:49:23,586 PRACTICE AND CHAIRED BY 5287 03:49:23,586 --> 03:49:26,522 DOCTORS -- THE MIC JUST WENT 5288 03:49:26,522 --> 03:49:32,562 OUT. 5289 03:49:32,562 --> 03:49:36,165 DOCTORS CHRISTINA BUCCI-RECHTWEG 5290 03:49:36,165 --> 03:49:39,936 AND DR. ABDEL-RAHMAN. 5291 03:49:39,936 --> 03:49:42,338 DR. BUCCI-RECHTWEG IS THE HEAD 5292 03:49:42,338 --> 03:49:45,708 OF PEDIATRIC AND MATERNAL HEALTH 5293 03:49:45,708 --> 03:49:48,744 POLICY AT NOVARTIS 5294 03:49:48,744 --> 03:49:50,580 PHARMACEUTICALS AND HAS OVER 20 5295 03:49:50,580 --> 03:49:52,481 YEARS OF EXPERIENCE IN CLINICAL 5296 03:49:52,481 --> 03:49:53,950 DEVELOPMENT AND MEDICAL AFFAIRS 5297 03:49:53,950 --> 03:49:56,886 AS WELL AS IN REGULATORY AND 5298 03:49:56,886 --> 03:49:57,753 DEVELOPMENT POLICY. 5299 03:49:57,753 --> 03:50:01,924 SHE'S OVERSEEN THE DEVELOPMENT 5300 03:50:01,924 --> 03:50:03,359 AND IMPLEMENTATION OF CLINICAL 5301 03:50:03,359 --> 03:50:06,062 PROGRAMS IN THE EUROPEAN UNION 5302 03:50:06,062 --> 03:50:08,931 AND UNITED STATES AND A CURRENT 5303 03:50:08,931 --> 03:50:12,034 MEMBER OF THE NICHD ADVISORY 5304 03:50:12,034 --> 03:50:12,268 COUNCIL. 5305 03:50:12,268 --> 03:50:13,936 WE'VE BEEN GRATEFUL FOR HER 5306 03:50:13,936 --> 03:50:16,973 SERVICE ON THE ORIGINAL PRGLAC 5307 03:50:16,973 --> 03:50:17,273 AND COUNCIL. 5308 03:50:17,273 --> 03:50:21,477 DR. ABDEL-RAHMAN IS A PEDIATRIC 5309 03:50:21,477 --> 03:50:25,414 RESEARCHER WHO SERVES AS CHIEF 5310 03:50:25,414 --> 03:50:30,353 SCIENTIFIC OFFICER FOR DATA 5311 03:50:30,353 --> 03:50:32,989 SYNTHESIS. 5312 03:50:32,989 --> 03:50:37,093 NEWLY-FORMED KANSAS CITY 5313 03:50:37,093 --> 03:50:43,933 START-UP AND HELD A THE MISSOURI 5314 03:50:43,933 --> 03:50:52,742 CHOIR AND PEDIATRIC 5315 03:50:52,742 --> 03:50:53,075 PHARMACOLOGY. 5316 03:50:53,075 --> 03:50:55,378 >> I THINK WE HAVE SLIDES TO 5317 03:50:55,378 --> 03:51:05,521 PULL UP. 5318 03:51:06,555 --> 03:51:08,124 I DON'T SEE THEM ON MY END BUT 5319 03:51:08,124 --> 03:51:09,525 IF YOU SEE THEM LET ME KNOW AND 5320 03:51:09,525 --> 03:51:18,267 I'LL START. 5321 03:51:18,267 --> 03:51:19,368 YOU WHILE WE'RE GETTING THOSE 5322 03:51:19,368 --> 03:51:21,771 SLIDES PULLED UP. 5323 03:51:21,771 --> 03:51:24,473 IT'S A PLEASURE TO BE WITH YOU 5324 03:51:24,473 --> 03:51:26,475 AND IT'S A PLEASURE TO DISCUSS 5325 03:51:26,475 --> 03:51:28,344 THE IMPLEMENTATION WORKING 5326 03:51:28,344 --> 03:51:28,544 GROUP. 5327 03:51:28,544 --> 03:51:31,347 IF WE CAN GO TO THE NEXT SLIDE. 5328 03:51:31,347 --> 03:51:34,150 WHILE IT'S INTUITIVE TO THE 5329 03:51:34,150 --> 03:51:36,519 COUNCIL WE FELT BECAUSE OF THE 5330 03:51:36,519 --> 03:51:37,486 OPEN NATURE OF THIS MEETING IT 5331 03:51:37,486 --> 03:51:40,956 WOULD BE HELPFUL TO LEAD WITH A 5332 03:51:40,956 --> 03:51:41,624 FOUNDATIONAL PREMISE UNDER 5333 03:51:41,624 --> 03:51:43,693 PRGLAC AND THE RELATED 5334 03:51:43,693 --> 03:51:44,460 ACTIVITIES. 5335 03:51:44,460 --> 03:51:46,462 THAT IS INDIVIDUALS WHO HAVE 5336 03:51:46,462 --> 03:51:48,698 CHRONIC ILLNESSES GET PREGNANT 5337 03:51:48,698 --> 03:51:51,367 AND NURSE INFANTS. 5338 03:51:51,367 --> 03:51:55,371 OTHERWISE HEALTHY PREGNANT AND 5339 03:51:55,371 --> 03:52:00,276 LACTATES INDIVIDUALS FALL IL AND 5340 03:52:00,276 --> 03:52:03,646 DECISIONS REMAIN TO REMAIN ON 5341 03:52:03,646 --> 03:52:05,114 MEDICATIONS WAS UNDERSTANDING OF 5342 03:52:05,114 --> 03:52:06,949 RISKS AN BENEFITS BECAUSE THE 5343 03:52:06,949 --> 03:52:08,651 RELEVANT TRIALS AREN'T 5344 03:52:08,651 --> 03:52:09,985 CONDUCTED. 5345 03:52:09,985 --> 03:52:12,021 PROTECTING INDIVIDUALS THROUGH 5346 03:52:12,021 --> 03:52:14,023 RESEARCH RATHER THAN FOR 5347 03:52:14,023 --> 03:52:15,925 RESEARCH WAS ADVANCED BY SKIP 5348 03:52:15,925 --> 03:52:19,295 NELSON AS PART OF THE ETHICAL 5349 03:52:19,295 --> 03:52:19,962 FRAMEWORK FOR INCLUDING CHILDREN 5350 03:52:19,962 --> 03:52:22,498 IN RESEARCH AND THE CONCEPT IS 5351 03:52:22,498 --> 03:52:24,633 APPLICABLE TO POPULATIONS THAT 5352 03:52:24,633 --> 03:52:26,535 REMAIN UNDER REPRESENTED IN 5353 03:52:26,535 --> 03:52:27,303 CLINICAL TRIALS AND PREGNANT AND 5354 03:52:27,303 --> 03:52:32,675 LACTATING INDIVIDUALS. 5355 03:52:32,675 --> 03:52:35,144 SO WE'VE GOT A LITTLE HISTORICAL 5356 03:52:35,144 --> 03:52:40,483 CONTEXT AND STARTS IN 2016 WHEN 5357 03:52:40,483 --> 03:52:42,184 A REPUBLICAN FROM WASHINGTON AND 5358 03:52:42,184 --> 03:52:43,786 DEMOCRAT INTRODUCED THE SAFE 5359 03:52:43,786 --> 03:52:46,455 MEDICATIONS FOR MOMS AND BABIES 5360 03:52:46,455 --> 03:52:49,291 ACT INTEGRATED INTO THE 21st 5361 03:52:49,291 --> 03:52:50,226 CENTURIES CURE. 5362 03:52:50,226 --> 03:52:51,327 AS PARTS OF THE LEGISLATION 5363 03:52:51,327 --> 03:52:53,963 DEPARTMENT OF HEALTH AND HUMAN 5364 03:52:53,963 --> 03:52:55,197 SERVICES WAS REQUIRED TO REPORT 5365 03:52:55,197 --> 03:52:57,233 ON THE DEVELOPMENT OF SAFE AND 5366 03:52:57,233 --> 03:52:58,100 EFFECTIVE THERAPIES FOR PREGNANT 5367 03:52:58,100 --> 03:53:02,004 AND LACTATING WOMEN, ETHICAL 5368 03:53:02,004 --> 03:53:02,772 ISSUES SURROUNDING THE INCLUSION 5369 03:53:02,772 --> 03:53:06,242 OF PREGNANT AND LACTATING WOMEN 5370 03:53:06,242 --> 03:53:07,376 IN FEDERAL RESEARCH AND 5371 03:53:07,376 --> 03:53:10,479 ACTIVITIES FOCUSSED ON PREGNANT 5372 03:53:10,479 --> 03:53:12,214 AND LACTATING WOMEN AND REPORT 5373 03:53:12,214 --> 03:53:15,418 ON APPLICATIONS, APPROVALS AND 5374 03:53:15,418 --> 03:53:17,052 LABELLING CHANGES RELEVANT TO 5375 03:53:17,052 --> 03:53:18,554 PREGNANT AND LACTATING WOMEN. 5376 03:53:18,554 --> 03:53:20,689 FROM 2017 TO 2017 5377 03:53:20,689 --> 03:53:21,290 REPRESENTATIVES FROM A MULTED 5378 03:53:21,290 --> 03:53:24,894 TOO OF AGENCIES CONVENED AS A 5379 03:53:24,894 --> 03:53:28,431 TASK FORCE TO LAY OUT 15 5380 03:53:28,431 --> 03:53:33,569 RECOMMENDATIONS AIMED AT THE 5381 03:53:33,569 --> 03:53:39,942 INCLUSION OF PREGNANT AND 5382 03:53:39,942 --> 03:53:41,644 LACTATING WOMEN AND INCLUDED 5383 03:53:41,644 --> 03:53:43,045 ACADEMIA AND PROFESSIONAL 5384 03:53:43,045 --> 03:53:45,014 ORGANIZATIONS WITH THE GOAL OF 5385 03:53:45,014 --> 03:53:46,115 DRAFTING AN IMPLEMENTATION PLAN 5386 03:53:46,115 --> 03:53:47,616 FOR THE ORIGINAL 5387 03:53:47,616 --> 03:53:48,918 RECOMMENDATIONS. 5388 03:53:48,918 --> 03:53:53,756 THE RELESS -- RELEASE OF THE 5389 03:53:53,756 --> 03:53:56,025 PLAN STIMULATED RESOURCES IN THE 5390 03:53:56,025 --> 03:53:58,227 CONSOLIDATED APPROPRIATIONS ACT 5391 03:53:58,227 --> 03:54:01,931 TO CREATE A WORKING GROUP, 5392 03:54:01,931 --> 03:54:04,099 COMMITTEE, TO MONITOR AND REPORT 5393 03:54:04,099 --> 03:54:04,934 ON THE IMPLEMENTATION THE FOCUS 5394 03:54:04,934 --> 03:54:07,369 OF THE SESSION, THE MEMO YOU 5395 03:54:07,369 --> 03:54:09,738 HAVE BEFORE YOU AND THE IMMINENT 5396 03:54:09,738 --> 03:54:11,140 REPORT RELEASED LATER THIS 5397 03:54:11,140 --> 03:54:11,373 MONTH. 5398 03:54:11,373 --> 03:54:14,143 NEXT SLIDE, PLEASE. 5399 03:54:14,143 --> 03:54:16,612 I'LL REFER YOU TO THE MEMO DATED 5400 03:54:16,612 --> 03:54:19,815 MARCH 2024 FOR THE DETAIL OF THE 5401 03:54:19,815 --> 03:54:22,051 LANGUAGE OF THE RECOMMENDATIONS 5402 03:54:22,051 --> 03:54:24,920 ALONG WITH SUBRECOMMENDATIONS 5403 03:54:24,920 --> 03:54:26,822 AND THOSE JOINING VIRTUALLY CAN 5404 03:54:26,822 --> 03:54:28,457 DETAIL THE RECOMMENDATIONS ON 5405 03:54:28,457 --> 03:54:34,196 THE NICHD'S WEBSITE. 5406 03:54:34,196 --> 03:54:38,200 FOR THOSE INTERESTED IN THE 5407 03:54:38,200 --> 03:54:40,469 LEGISLATIVE LANGUAGE YOU CAN 5408 03:54:40,469 --> 03:54:50,846 FIND IT ON THIS SLIDE. 5409 03:54:57,186 --> 03:54:59,522 THIS ONE WITH THE NICHD STAFF 5410 03:54:59,522 --> 03:55:00,222 AND OTHERS. 5411 03:55:00,222 --> 03:55:01,757 THIS SMALLER GROUP SET THE 5412 03:55:01,757 --> 03:55:02,825 STRUCTURE FOR THE MEETING. 5413 03:55:02,825 --> 03:55:07,263 WE IDENTIFIED THE INVIDEES WHO 5414 03:55:07,263 --> 03:55:08,330 CAN BEST SPEAK TO PROGRESS AND 5415 03:55:08,330 --> 03:55:12,334 THE BROADER WORKING GROUP WAS 5416 03:55:12,334 --> 03:55:15,271 COMPRISED OF REPRESENTATIVES 5417 03:55:15,271 --> 03:55:18,140 FROM ACADEMIA AND PROFESSIONAL 5418 03:55:18,140 --> 03:55:20,142 ORGANIZATIONS TASKED WITH 5419 03:55:20,142 --> 03:55:21,944 DELIBERATING ON THE INFORMATION 5420 03:55:21,944 --> 03:55:23,846 SHARED AND CONTRIBUTING 5421 03:55:23,846 --> 03:55:26,015 KNOWLEDGE FROM INDIVIDUAL 5422 03:55:26,015 --> 03:55:26,949 SECTORS AND INTRODUCING 5423 03:55:26,949 --> 03:55:32,755 ADDITIONAL CONSIDERATIONS TO 5424 03:55:32,755 --> 03:55:35,157 FACILITATE AND IT WILL BE 5425 03:55:35,157 --> 03:55:36,892 REFLECTED IN THE FINAL REPORT. 5426 03:55:36,892 --> 03:55:38,327 TO FACILITATE THE ORGANIZATION 5427 03:55:38,327 --> 03:55:42,164 OF OUR MEETINGS THE 5428 03:55:42,164 --> 03:55:42,898 RECOMMENDATIONS WERE IN FIVE 5429 03:55:42,898 --> 03:55:43,566 CLUSTERS AS DEFINED ON THE 5430 03:55:43,566 --> 03:55:47,069 SLIDE. 5431 03:55:47,069 --> 03:55:49,171 AND THESE CLUSTERS WERE REVIEWED 5432 03:55:49,171 --> 03:55:51,240 DURING TWO VIRTUAL MEETINGS AND 5433 03:55:51,240 --> 03:55:52,074 ONE IN PERSON MEETING. 5434 03:55:52,074 --> 03:55:53,809 I THINK IT'S ALSO IMPORTANT TO 5435 03:55:53,809 --> 03:55:55,811 POINT OUT THAT BECAUSE OF OUR 5436 03:55:55,811 --> 03:55:57,479 EXPRESSED TIME LINE THERE WAS A 5437 03:55:57,479 --> 03:55:58,981 SIZABLE AMOUNT OF OFFLINE 5438 03:55:58,981 --> 03:56:00,749 ACTIVITY THAT TOOK PLACE AMONG 5439 03:56:00,749 --> 03:56:03,385 WORKING GROUP MEMBERS BETWEEN 5440 03:56:03,385 --> 03:56:06,889 MEETINGS. 5441 03:56:06,889 --> 03:56:13,462 DISCUSSIONS CLUSTERED AROUND 5442 03:56:13,462 --> 03:56:16,832 CLUSTER A AND E WERE LARGELY 5443 03:56:16,832 --> 03:56:20,903 INFORMED BY SPEAKERS BY NIH. 5444 03:56:20,903 --> 03:56:22,037 CLUSTER B DEALT WITH TRAINING 5445 03:56:22,037 --> 03:56:24,506 AND CAREER DEVELOPMENT WE 5446 03:56:24,506 --> 03:56:25,608 ENGAGED NICHD WITH THE CENTERS 5447 03:56:25,608 --> 03:56:31,113 FOR DISEASE CONTROL AND 5448 03:56:31,113 --> 03:56:35,384 PREVENTION, THE SOCIETY FOR 5449 03:56:35,384 --> 03:56:37,286 MATERNAL AND FETAL MEDICINE AND 5450 03:56:37,286 --> 03:56:45,461 MOTHER TO BABY AND THE USDA WAS 5451 03:56:45,461 --> 03:56:49,164 ENLISTED TO SPEAK AND THROUGH A 5452 03:56:49,164 --> 03:56:51,634 SEPARATE AD HOC MEETING WE 5453 03:56:51,634 --> 03:56:55,104 SCHEDULED A MEET WITH MEMBERS 5454 03:56:55,104 --> 03:56:55,671 OFF THE NATIONAL ACADEMIES 5455 03:56:55,671 --> 03:56:56,305 SCIENCES ENGINEERING MEDICINE 5456 03:56:56,305 --> 03:56:56,905 COMMITTEE WHO AUTHORED THE 5457 03:56:56,905 --> 03:56:59,375 RECENTLY PUBLISHED FRAMEWORK TO 5458 03:56:59,375 --> 03:57:06,281 ADDRESS LEGAL, ETHICAL AND 5459 03:57:06,281 --> 03:57:10,319 POLICY ISSUES AND CLUSTER C WAS 5460 03:57:10,319 --> 03:57:12,121 ADDRESSED BY REPRESENTATIVES 5461 03:57:12,121 --> 03:57:13,589 FROM THE FDA, THE DEPARTMENT OF 5462 03:57:13,589 --> 03:57:16,458 HEALTH AND HUMAN SERVICES AND 5463 03:57:16,458 --> 03:57:18,827 THE OFFICE OF THE NATIONAL 5464 03:57:18,827 --> 03:57:20,062 COORDINATOR FOR THE CENTER FOR 5465 03:57:20,062 --> 03:57:21,664 MEDICAID AND MEDICARE SERVICES. 5466 03:57:21,664 --> 03:57:24,199 WE RECOGNIZED THE ACTIVITIES 5467 03:57:24,199 --> 03:57:25,601 HERE DO NOT CONSTITUTE THE 5468 03:57:25,601 --> 03:57:28,237 TOTALITY OF THE WORK IN THE AREA 5469 03:57:28,237 --> 03:57:30,606 BUT A COMPREHENSIVE REVIEW 5470 03:57:30,606 --> 03:57:33,275 WASN'T FEASIBLE WITHIN THE TIME 5471 03:57:33,275 --> 03:57:33,575 CONSTRAINTS. 5472 03:57:33,575 --> 03:57:36,412 I'M NOT GOING TO TURN IT OVER TO 5473 03:57:36,412 --> 03:57:37,680 YOUR COUNCIL COLLEAGUE CHRISTINA 5474 03:57:37,680 --> 03:57:40,849 TO DISCUSS THE FINDINGS OF THE 5475 03:57:40,849 --> 03:57:41,316 WORKING GROUP. 5476 03:57:41,316 --> 03:57:45,621 >> THANK YOU, SUE. 5477 03:57:45,621 --> 03:57:47,823 BEFORE WE MOVE INTO MORE OF THE 5478 03:57:47,823 --> 03:57:49,291 DETAILS RELATED TO THE 5479 03:57:49,291 --> 03:57:51,393 RECOMMENDATIONS, WE WANTED TO 5480 03:57:51,393 --> 03:57:53,128 HIGHLIGHT FOR YOU IF IT'S CLEAR 5481 03:57:53,128 --> 03:57:56,065 AS WE REVIEWED THROUGH THE OVER 5482 03:57:56,065 --> 03:57:58,167 ARCHING RECOMMENDATIONS AND 5483 03:57:58,167 --> 03:57:58,967 SUBRECOMMENDATIONS THERE WERE 5484 03:57:58,967 --> 03:58:03,806 KEY OVER ARCHING THEMES THAT 5485 03:58:03,806 --> 03:58:07,376 RESONATED THROUGH.THERE WAS A 5486 03:58:07,376 --> 03:58:08,310 NEED TO BE DISTINCTION PLACED 5487 03:58:08,310 --> 03:58:09,311 RESEARCH FOR PREGNANT WOMEN AND 5488 03:58:09,311 --> 03:58:13,182 FOR LACTATING WOMEN. 5489 03:58:13,182 --> 03:58:16,185 SOME RECOMMENDATIONS HAD SEEN 5490 03:58:16,185 --> 03:58:17,619 DIFFERENT DEGREES OF PROGRESS 5491 03:58:17,619 --> 03:58:18,987 DEPENDING IF THE FOCUS OF THE 5492 03:58:18,987 --> 03:58:20,522 DISCUSSION WAS ON THE PREGNANT 5493 03:58:20,522 --> 03:58:21,023 POPULATION OR LACTATING 5494 03:58:21,023 --> 03:58:24,893 POPULATION. 5495 03:58:24,893 --> 03:58:29,431 THE SECOND KEY THEME IS CERTAIN 5496 03:58:29,431 --> 03:58:31,166 RECOMMENDATIONS STRUGGLED WITH 5497 03:58:31,166 --> 03:58:32,568 IMPLEMENTATION AS THERE OFTEN 5498 03:58:32,568 --> 03:58:35,003 TIMES WOULD BE MULTIPLE 5499 03:58:35,003 --> 03:58:35,804 STAKEHOLDERS THAT WOULD NEED TO 5500 03:58:35,804 --> 03:58:38,774 BE ENGAGED FOR THE 5501 03:58:38,774 --> 03:58:39,508 RECOMMENDATIONS TO BE CARRIED 5502 03:58:39,508 --> 03:58:41,577 OUT AND. 5503 03:58:41,577 --> 03:58:42,511 ASSIGNMENT IN ORDER TO SEE THOSE 5504 03:58:42,511 --> 03:58:43,645 MOVE FORWARD. 5505 03:58:43,645 --> 03:58:47,015 AND THAT TAKES US TO THE THIRD 5506 03:58:47,015 --> 03:58:49,284 THEME AND THERE WERE NUMEROUS 5507 03:58:49,284 --> 03:58:52,821 RECOMMENDATIONS THAT CALLED FOR 5508 03:58:52,821 --> 03:58:56,058 ENGAGING MULTIPLE DIVERSE 5509 03:58:56,058 --> 03:58:58,093 STAKEHOLDERS AND NICELY GOES 5510 03:58:58,093 --> 03:59:00,529 WITH THE THEMES DISCUSSED EVEN 5511 03:59:00,529 --> 03:59:01,663 THIS MORNING ABOUT DATA SHARING 5512 03:59:01,663 --> 03:59:05,367 AND THERE'S A REAL NEED TO BE 5513 03:59:05,367 --> 03:59:08,570 COHESIVE CALLOUTS DUE TO 5514 03:59:08,570 --> 03:59:09,738 PREGNANT AND LACTATING 5515 03:59:09,738 --> 03:59:10,873 POPULATIONS TO STRENGTHEN AND 5516 03:59:10,873 --> 03:59:16,145 MOVE FORWARD ANY FUTURE LOOKING 5517 03:59:16,145 --> 03:59:17,546 PRIVATE-PUBLIC PARTNERSHIPS THAT 5518 03:59:17,546 --> 03:59:19,581 NEED TO COME UNDER THE 5519 03:59:19,581 --> 03:59:21,884 RECOMMENDATIONS HIGHLIGHTED BY 5520 03:59:21,884 --> 03:59:23,385 THE PRGLAC TASK FORCE. 5521 03:59:23,385 --> 03:59:26,822 THE FOURTH THEME WE SAW IS SOME 5522 03:59:26,822 --> 03:59:28,490 RECOMMENDATIONS TO BE 5523 03:59:28,490 --> 03:59:31,393 IMPLEMENTED MAY REQUIRE 5524 03:59:31,393 --> 03:59:34,062 ADDITIONAL RESOURCES AND/OR TO 5525 03:59:34,062 --> 03:59:38,133 IMPLEMENT GRANTING NEW 5526 03:59:38,133 --> 03:59:39,401 AUTHORITIES AND MAY REQUIRE SOME 5527 03:59:39,401 --> 03:59:40,068 CONGRESSIONAL ACTION. 5528 03:59:40,068 --> 03:59:43,372 THE FIFTH THEME IN REVIEWING THE 5529 03:59:43,372 --> 03:59:45,107 RECOMMENDATIONS IS THAT MANY OF 5530 03:59:45,107 --> 03:59:48,510 THESE RECOMMENDATIONS ARE EITHER 5531 03:59:48,510 --> 03:59:50,045 JUST BEGINNING IMPLEMENTATION OR 5532 03:59:50,045 --> 03:59:55,651 IN PROGRESS OR HAVE YET STARTED. 5533 03:59:55,651 --> 03:59:57,786 THEREFORE WILL THIS WORK GROUP 5534 03:59:57,786 --> 03:59:59,655 WAS ASSESSED FOR THE STATUS 5535 03:59:59,655 --> 04:00:01,256 REPORT AT PRESENT THERE WILL BE 5536 04:00:01,256 --> 04:00:03,392 A NEED FOR CONTINUING ASSESSMENT 5537 04:00:03,392 --> 04:00:04,393 TO ENSURE THE IMPLEMENTATION IS 5538 04:00:04,393 --> 04:00:05,727 ABLE TO FULLY MOVE FORWARD. 5539 04:00:05,727 --> 04:00:08,163 WITH THAT DISCUSSION ON THE OVER 5540 04:00:08,163 --> 04:00:09,464 ARCHING THEMES IDENTIFIED I'D 5541 04:00:09,464 --> 04:00:13,836 LIKE TO TURN TO MORE SPECIFIC 5542 04:00:13,836 --> 04:00:14,203 DISCUSSION. 5543 04:00:14,203 --> 04:00:17,239 AND A WORK GROUP OF COUNCIL IN 5544 04:00:17,239 --> 04:00:19,408 ORDER TO ACCOMPLISH THIS TASK, 5545 04:00:19,408 --> 04:00:22,211 DID REVIEW THE DIFFERENT 5546 04:00:22,211 --> 04:00:23,378 RECOMMENDATIONS FROM THE PRGLAC 5547 04:00:23,378 --> 04:00:24,546 TASK FORCE IN CLUSTERS. 5548 04:00:24,546 --> 04:00:26,782 I'LL PROVIDE TO YOU AN OVERVIEW 5549 04:00:26,782 --> 04:00:27,916 OF THE IMPLEMENTATION TO DATE 5550 04:00:27,916 --> 04:00:29,518 REGARDING THE CONDUCT OF 5551 04:00:29,518 --> 04:00:30,385 CLINICAL RESEARCH AND TRIALS 5552 04:00:30,385 --> 04:00:33,388 FOUND UNDER OUR DISCUSSIONS IN 5553 04:00:33,388 --> 04:00:36,358 CLUSTER A AND NOVEL DRUG 5554 04:00:36,358 --> 04:00:37,159 DISCOVERY FOUND IN 5555 04:00:37,159 --> 04:00:38,594 RECOMMENDATIONS WE DISCUSSED IN 5556 04:00:38,594 --> 04:00:39,995 CLUSTER E. 5557 04:00:39,995 --> 04:00:41,330 AND WHAT YOU'LL SEE AND THIS 5558 04:00:41,330 --> 04:00:44,466 WILL BE THE CASE FOR THE NEXT 5559 04:00:44,466 --> 04:00:47,402 SEQUENCE OF SLIDES WE PLACED 5560 04:00:47,402 --> 04:00:50,973 EACH OF THE SUBRECOMMENDATIONS 5561 04:00:50,973 --> 04:00:52,975 UNDER THE 15 RECOMMENDATIONS OF 5562 04:00:52,975 --> 04:00:54,743 THE TASK FORCE INTO DIFFERENT 5563 04:00:54,743 --> 04:00:55,577 STATUS BUCKETS. 5564 04:00:55,577 --> 04:00:58,480 EITHER IMPLEMENTED, IN PROGRESS 5565 04:00:58,480 --> 04:01:00,849 OR NOT YET IMPLEMENTED. 5566 04:01:00,849 --> 04:01:02,885 THE THEMES YOU'LL SEE IN THE NOT 5567 04:01:02,885 --> 04:01:04,519 YET IMPLEMENTED ARE THOSE THAT 5568 04:01:04,519 --> 04:01:06,755 FELL UNDER THE OVER ARCHING 5569 04:01:06,755 --> 04:01:10,525 THEME OF PERHAPS A NEED FOR 5570 04:01:10,525 --> 04:01:11,126 ADDITIONAL RESOURCES OR 5571 04:01:11,126 --> 04:01:13,962 CONGRESSIONAL ACTION AND/OR 5572 04:01:13,962 --> 04:01:16,531 ASSIGNMENT OF LEADS IN ORDER TO 5573 04:01:16,531 --> 04:01:17,466 MOVE THE RECOMMENDATIONS FORWARD 5574 04:01:17,466 --> 04:01:18,333 AND THAT'S CONSISTENT THROUGH 5575 04:01:18,333 --> 04:01:22,137 THE SLIDES WHEN YOU SEE THE DARK 5576 04:01:22,137 --> 04:01:23,405 BLUE BUCKET ON NOT IMPLEMENTED. 5577 04:01:23,405 --> 04:01:24,806 WHERE WE CAN FOCUS ON THE 5578 04:01:24,806 --> 04:01:26,909 IMPLEMENTED FOR THE CONDUCT OF 5579 04:01:26,909 --> 04:01:29,144 RESEARCH AND TRIALS AND NOVEL 5580 04:01:29,144 --> 04:01:31,413 DRUG DISCOVERY, EVEN AS WE HEARD 5581 04:01:31,413 --> 04:01:34,316 IN THE EARLIER PRESENTATIONS WE 5582 04:01:34,316 --> 04:01:35,017 HAVE BEEN ABLE TO MAKE PROGRESS 5583 04:01:35,017 --> 04:01:39,388 AS IT RELATES TO PERIODS BY 5584 04:01:39,388 --> 04:01:43,191 GOVERNMENT FUNDERS AND A 5585 04:01:43,191 --> 04:01:43,859 SEPARATE PRIORITIZATION PROCESS 5586 04:01:43,859 --> 04:01:45,193 FOR THERAPIES AND/OR CONDITIONS 5587 04:01:45,193 --> 04:01:47,129 THAT WOULD NEED TO BE DEVELOPED 5588 04:01:47,129 --> 04:01:49,731 IN PREGNANT AND LACTATING WOMEN. 5589 04:01:49,731 --> 04:01:50,165 . 5590 04:01:50,165 --> 04:01:55,070 AND I CALL OUT THE ADEPT WORK 5591 04:01:55,070 --> 04:01:57,005 TAKING PLACE BY NICHD WHERE 5592 04:01:57,005 --> 04:02:00,208 THEY'VE MOVED FORWARD NICELY TO 5593 04:02:00,208 --> 04:02:03,378 ESTABLISH THE PRIORITIZATION 5594 04:02:03,378 --> 04:02:07,382 PROCESS INCLUDING A MEET THE 5595 04:02:07,382 --> 04:02:09,551 INAUGURAL MEETING ON RESEARCH 5596 04:02:09,551 --> 04:02:12,421 AND PRIORITIZATION OF RESEARCH 5597 04:02:12,421 --> 04:02:19,328 ON PREGNANT AND POSTPARTUM AND 5598 04:02:19,328 --> 04:02:21,463 LACTATING PEOPLE AND RESEARCH TO 5599 04:02:21,463 --> 04:02:25,734 PLAY A ROLE IN RELEVANT DATA TO 5600 04:02:25,734 --> 04:02:27,469 MORE BROADLY INCLUDE THERAPEUTIC 5601 04:02:27,469 --> 04:02:29,738 PRODUCTS AND PREGNANT AND 5602 04:02:29,738 --> 04:02:31,373 LACTATING WOMEN AND ESTABLISHING 5603 04:02:31,373 --> 04:02:34,943 FINANCIAL SUPPORT INCENTIVES 5604 04:02:34,943 --> 04:02:38,513 THROUGH EITHER ESTABLISHED OR IN 5605 04:02:38,513 --> 04:02:39,381 THE DEVELOPMENT OF MULTI-CENTER 5606 04:02:39,381 --> 04:02:43,285 INFRASTRUCTURES. 5607 04:02:43,285 --> 04:02:47,289 SO THE SECOND FOCUS WILL DISCUSS 5608 04:02:47,289 --> 04:02:50,225 IN REGARD TO CLUSTER B 5609 04:02:50,225 --> 04:02:51,360 EDUCATION, OUTREACH TRAINING AND 5610 04:02:51,360 --> 04:02:52,294 CAREER DEVELOPMENT. 5611 04:02:52,294 --> 04:02:54,997 AGAIN, I'D LIKE YOU TO REMEMBER 5612 04:02:54,997 --> 04:02:56,832 THE DISCUSSION THE RICH 5613 04:02:56,832 --> 04:02:58,100 DISCUSSION FROM EARLIER THAT WAS 5614 04:02:58,100 --> 04:02:59,267 HEARD IN COUNCIL AND THINK ABOUT 5615 04:02:59,267 --> 04:03:02,371 IT IN TERMS OF THE APPLICATION 5616 04:03:02,371 --> 04:03:03,238 AND FOR THE PREGNANT AND 5617 04:03:03,238 --> 04:03:05,607 LACTATING POMP. 5618 04:03:05,607 --> 04:03:07,209 -- POPULATION. 5619 04:03:07,209 --> 04:03:09,878 INTEREST WERE NUMEROUS 5620 04:03:09,878 --> 04:03:12,381 ACTIVITIES STARTED EITHER 5621 04:03:12,381 --> 04:03:13,482 ONGOING OR NOW IN PROGRESS AND 5622 04:03:13,482 --> 04:03:15,884 I'D LIKE TO SPECIFICALLY CALL 5623 04:03:15,884 --> 04:03:19,388 OUT 3B THE RECOMMENDATION ON 5624 04:03:19,388 --> 04:03:21,957 DEVELOPING MENTORS ON LACTATION 5625 04:03:21,957 --> 04:03:22,758 AND THERAPEUTICS FOR CLINICAL 5626 04:03:22,758 --> 04:03:23,759 AND BASIC SCIENCE. 5627 04:03:23,759 --> 04:03:25,727 I THINK IT RESONATES WITH THE 5628 04:03:25,727 --> 04:03:28,563 MESSAGES YOU HEARD THIS MORNING. 5629 04:03:28,563 --> 04:03:32,267 AT PRESENT THIS IS A FIELD WIDE 5630 04:03:32,267 --> 04:03:32,534 CHALLENGE. 5631 04:03:32,534 --> 04:03:34,603 THERE ARE SOME SPECIFIC EFFORTS 5632 04:03:34,603 --> 04:03:39,374 DEFINITIVELY NEEDED TO MEET THE 5633 04:03:39,374 --> 04:03:41,143 OBSTETRIC AND LACTATION SPACE TO 5634 04:03:41,143 --> 04:03:42,978 SEE THIS IMPLEMENTED. 5635 04:03:42,978 --> 04:03:48,850 AS IT RELATES TO THE 5636 04:03:48,850 --> 04:03:51,386 IMPLEMENTATIONS, TRULY HERE FOR 5637 04:03:51,386 --> 04:03:54,122 EDUCATION OUTREACH AND TRAINING 5638 04:03:54,122 --> 04:03:55,390 THERE ARE SOME EXISTING 5639 04:03:55,390 --> 04:03:57,826 INFRASTRUCTURE FRAMEWORKS IN 5640 04:03:57,826 --> 04:03:59,895 PLACE THAT MIGHT BE WILL ABLE TO 5641 04:03:59,895 --> 04:04:03,398 BE BETTER LEVERAGED AND/OR MORE 5642 04:04:03,398 --> 04:04:06,268 SYSTEMATIC EFFORTS TO OPTIMIZE 5643 04:04:06,268 --> 04:04:09,471 THEM INTO A MORE COHESIVE AND 5644 04:04:09,471 --> 04:04:11,373 STREAMLINE EFFORT TO MOVE THE 5645 04:04:11,373 --> 04:04:13,075 RECOMMENDATIONS FORWARD AND 5646 04:04:13,075 --> 04:04:13,675 ULTIMATELY HOPEFULLY SEE THEM 5647 04:04:13,675 --> 04:04:18,980 SUCCESSFUL. 5648 04:04:18,980 --> 04:04:24,953 IF WE CAN GO TO POLICY AND 5649 04:04:24,953 --> 04:04:27,656 REGULATORY AND IT'S A SPACE 5650 04:04:27,656 --> 04:04:30,392 WHERE THERE WILL BE A NEED FOR 5651 04:04:30,392 --> 04:04:31,726 CONGRESSIONAL ACTION. 5652 04:04:31,726 --> 04:04:36,198 THERE'S IN FACT AN ERROR AS IT 5653 04:04:36,198 --> 04:04:38,200 RELATES TO 1A. 5654 04:04:38,200 --> 04:04:39,134 IT'S LISTED AS PROJECT BUT THE 5655 04:04:39,134 --> 04:04:42,104 COMMON RULE WAS UPDATED IN 2019 5656 04:04:42,104 --> 04:04:44,372 TO REMOVE PREGNANT WOMEN AS A 5657 04:04:44,372 --> 04:04:45,040 VULNERABLE POPULATION AND 5658 04:04:45,040 --> 04:04:46,341 THEREFORE WE'LL MAKE SURE THAT'S 5659 04:04:46,341 --> 04:04:47,008 UPDATED FOR THE FINAL DECK IN 5660 04:04:47,008 --> 04:04:48,877 THE RECORD. 5661 04:04:48,877 --> 04:04:50,779 I DO WANT TO HIGHLIGHT WHEN OUR 5662 04:04:50,779 --> 04:04:55,517 WORK GROUP WAS GOING THROUGH THE 5663 04:04:55,517 --> 04:04:57,919 REVIEW HOWEVER, THE LANGUAGE IS 5664 04:04:57,919 --> 04:05:00,989 SPECIFIC IN TERMS OF WHAT IT WAS 5665 04:05:00,989 --> 04:05:02,057 CALLING FOR SPECIFIC TO THE 5666 04:05:02,057 --> 04:05:04,192 LANGUAGE OF THE COMMON RULE. 5667 04:05:04,192 --> 04:05:06,595 THERE'S ALWAYS THE NEED FOR THIS 5668 04:05:06,595 --> 04:05:08,497 TO BE IMPLEMENTED ON AN 5669 04:05:08,497 --> 04:05:09,598 INSTITUTIONAL LEVEL OR LEVEL 5670 04:05:09,598 --> 04:05:14,002 IRBs AND WHILE WE'RE NOTING 1A 5671 04:05:14,002 --> 04:05:15,337 IS IMPLEMENTED WE ACKNOWLEDGE 5672 04:05:15,337 --> 04:05:17,973 THERE WILL BE OTHER ACTIVITIES 5673 04:05:17,973 --> 04:05:19,407 AROUND THE RECOMMENDATION WHICH 5674 04:05:19,407 --> 04:05:20,909 MAY NOT HAVE BEEN EXPLICITLY 5675 04:05:20,909 --> 04:05:21,776 CALLED FOR BUT NEED TO CONTINUE 5676 04:05:21,776 --> 04:05:25,113 TO MOVE FORWARD. 5677 04:05:25,113 --> 04:05:26,581 I WILL SAY THERE'S QUITE A BIT 5678 04:05:26,581 --> 04:05:30,919 OF WORK THAT'S BEEN DONE TO 5679 04:05:30,919 --> 04:05:31,453 BEGIN UNDERSTANDING THE 5680 04:05:31,453 --> 04:05:33,788 LIABILITY MITIGATION STRATEGY 5681 04:05:33,788 --> 04:05:35,357 THAT WILL NEED TO BE BETTER 5682 04:05:35,357 --> 04:05:36,324 ELUCIDATED FOR RESEARCH TO 5683 04:05:36,324 --> 04:05:39,361 ENGAGE IN THE PREGNANT AND 5684 04:05:39,361 --> 04:05:40,395 LACTATING POPULATIONS HOWEVER, 5685 04:05:40,395 --> 04:05:41,429 BECAUSE OF HOW THE 5686 04:05:41,429 --> 04:05:45,233 RECOMMENDATIONS HAVE BEEN WORDED 5687 04:05:45,233 --> 04:05:47,536 IN THE PRGLAC TASK FORCE, 5688 04:05:47,536 --> 04:05:48,170 IMPLEMENTATION PLAN THERE ARE 5689 04:05:48,170 --> 04:05:49,037 SOME SPECIFIC ACTIONS THAT WOULD 5690 04:05:49,037 --> 04:05:59,414 NIGHT -- NEED TO SEE 5691 04:06:03,451 --> 04:06:06,755 IMPLEMENTION -- IMPLEMENTATIONS 5692 04:06:06,755 --> 04:06:08,990 TO SEE 7A MOVE FORWARD. 5693 04:06:08,990 --> 04:06:14,496 AND MOVING TO CLUSTER D, IT WAS 5694 04:06:14,496 --> 04:06:15,397 IN RELATION TO REGISTRIES AND 5695 04:06:15,397 --> 04:06:17,632 REAL WORLD DATA. 5696 04:06:17,632 --> 04:06:19,401 FOR PURPOSES OF COUNCIL 5697 04:06:19,401 --> 04:06:21,469 PRESENTATION AND BECAUSE OF THE 5698 04:06:21,469 --> 04:06:25,507 FIRST OVER ARCHING THEME WE 5699 04:06:25,507 --> 04:06:26,942 REFERENCED WE PROVIDED THE 5700 04:06:26,942 --> 04:06:30,278 CURRENT STATUS AS IT RELATES TO 5701 04:06:30,278 --> 04:06:30,946 PREGNANCY AND A SEPARATE SLIDE 5702 04:06:30,946 --> 04:06:31,680 FROM LACTATION. 5703 04:06:31,680 --> 04:06:33,848 I THINK YOU'LL BEGIN TO SEE WHY 5704 04:06:33,848 --> 04:06:37,219 AS WE WALK THROUGH WHAT IS 5705 04:06:37,219 --> 04:06:40,222 CURRENTLY IN PROGRESS. 5706 04:06:40,222 --> 04:06:42,691 WHAT'S IN PROGRESS IS NUMEROUS 5707 04:06:42,691 --> 04:06:43,358 ACTIVITIES RELATED TO DATA 5708 04:06:43,358 --> 04:06:45,694 SPECIFIC TO THE PREGNANT 5709 04:06:45,694 --> 04:06:47,662 POPULATION OR LINKED FETAL 5710 04:06:47,662 --> 04:06:51,199 OUTCOME OR NEONATAL OUTCOME OR 5711 04:06:51,199 --> 04:06:52,667 DEVELOPMENT OUTCOME OF AN 5712 04:06:52,667 --> 04:06:52,901 INFANT. 5713 04:06:52,901 --> 04:06:54,536 THERE'S BEEN NUMEROUS ACTIVITIES 5714 04:06:54,536 --> 04:06:58,240 THAT HAVE MOVED FORWARD THAT ARE 5715 04:06:58,240 --> 04:06:59,975 IN RESPONSE TO THE 5716 04:06:59,975 --> 04:07:00,775 RECOMMENDATION AND SUB 5717 04:07:00,775 --> 04:07:02,477 RECOMMENDATIONS FOR THE PREGNANT 5718 04:07:02,477 --> 04:07:04,112 POPULATIONS AS IT RELATES TO 5719 04:07:04,112 --> 04:07:07,215 REGISTRIES IN REAL WORLD DATA. 5720 04:07:07,215 --> 04:07:10,051 WHEN YOU SEE IT'S STILL AS YET 5721 04:07:10,051 --> 04:07:11,219 MOVED FORWARD IN THE 5722 04:07:11,219 --> 04:07:12,954 NON-IMPLEMENTED SECTION FOR 5723 04:07:12,954 --> 04:07:17,359 PREGNANCY IS USER FRIENDLY 5724 04:07:17,359 --> 04:07:19,294 WEBSITES AND FACILITATING 5725 04:07:19,294 --> 04:07:20,595 TRANSPARENCY OF INFORMATION IN 5726 04:07:20,595 --> 04:07:21,663 REGISTRIES AND THE MORE 5727 04:07:21,663 --> 04:07:23,698 CHALLENGING PIECE WHICH IS 5728 04:07:23,698 --> 04:07:25,867 DEVELOPING AND PRIORITIZING THE 5729 04:07:25,867 --> 04:07:28,603 USE OF DISEASE AND CONDITION 5730 04:07:28,603 --> 04:07:30,138 FOCUSSED REGISTRIES OPPOSED TO 5731 04:07:30,138 --> 04:07:31,606 PRODUCT SPECIFIC REGISTRIES. 5732 04:07:31,606 --> 04:07:34,376 THERE'S A MORE ROBUST ABILITY TO 5733 04:07:34,376 --> 04:07:35,310 COLLECT INFORMATION IN A MORE 5734 04:07:35,310 --> 04:07:41,049 TIMELY FASHION. 5735 04:07:41,049 --> 04:07:42,550 THE WORK GROUP HIGHLIGHTED 5736 04:07:42,550 --> 04:07:43,385 DIFFERENT REGISTRIES. 5737 04:07:43,385 --> 04:07:45,854 THAT'S NOT THE ISSUE. 5738 04:07:45,854 --> 04:07:48,490 IT'S A PIECE THAT IS MISSING IS 5739 04:07:48,490 --> 04:07:51,393 A COHESIVENESS AND USER 5740 04:07:51,393 --> 04:07:53,028 FRIENDLINESS AND THE REGISTRIES 5741 04:07:53,028 --> 04:07:55,230 IN EXISTENCE TO BE USED FOR 5742 04:07:55,230 --> 04:07:57,332 MULTIPLE PURPOSES AND FOR 5743 04:07:57,332 --> 04:07:58,199 MULTIPLE STAKEHOLDERS. 5744 04:07:58,199 --> 04:08:00,535 SO GO TO THE NEXT SLIDE AND THIS 5745 04:08:00,535 --> 04:08:02,537 IS THE LACTATION SIDE AND THERE 5746 04:08:02,537 --> 04:08:04,005 IS QUITE A SIZABLE DIFFERENCE IN 5747 04:08:04,005 --> 04:08:06,374 TERMS OF WHAT WE SEEN FOR 5748 04:08:06,374 --> 04:08:08,843 IMPLEMENTATION AS IT RELATES TO 5749 04:08:08,843 --> 04:08:10,578 THE LACTATION RESEARCH 5750 04:08:10,578 --> 04:08:10,945 COMPONENT. 5751 04:08:10,945 --> 04:08:12,013 WHILE THERE'S BEEN GREAT 5752 04:08:12,013 --> 04:08:13,882 PROGRESS MADE FOR PREGNANCY MOST 5753 04:08:13,882 --> 04:08:18,853 PIECES AS IT RELATES TO HEALTH 5754 04:08:18,853 --> 04:08:20,522 RECORDS SYSTEMS THE ABILITY TO 5755 04:08:20,522 --> 04:08:23,391 USE LARGE STUDY AND DATABASES 5756 04:08:23,391 --> 04:08:25,894 AND USES OF NOVEL DATA METHODS 5757 04:08:25,894 --> 04:08:30,565 FOR DATA ANALYTICS AND REQUIRING 5758 04:08:30,565 --> 04:08:34,235 COMMON DATA ELEMENTS HAVEN'T 5759 04:08:34,235 --> 04:08:35,804 PROCEEDED FORWARD AS EFFICIENTLY 5760 04:08:35,804 --> 04:08:37,038 AS PREGNANCY. 5761 04:08:37,038 --> 04:08:39,974 THIS HAS BEEN A RAPID REVIEW OF 5762 04:08:39,974 --> 04:08:43,378 AN INTENSIVE AMOUNT OF WORK DONE 5763 04:08:43,378 --> 04:08:44,779 BY THE WORK GROUP. 5764 04:08:44,779 --> 04:08:47,782 WE'RE FULLY COGNIZANT OF THAT. 5765 04:08:47,782 --> 04:08:50,285 THERE'S NUMEROUS 5766 04:08:50,285 --> 04:08:51,252 SUBRECOMMENDATIONS WHICH IS WHY 5767 04:08:51,252 --> 04:08:53,988 THE REPORT CONTINUES TO BE IN 5768 04:08:53,988 --> 04:08:55,490 PROGRESS. 5769 04:08:55,490 --> 04:08:57,392 WHAT I WOULD LIKE TO REMIND 5770 04:08:57,392 --> 04:08:58,626 COUNCIL IS THESE KEY THEMES THAT 5771 04:08:58,626 --> 04:09:00,995 WE PRESENTED UP FRONT AT THE 5772 04:09:00,995 --> 04:09:02,764 START OF THE FINDINGS ARE 5773 04:09:02,764 --> 04:09:04,032 ACTUALLY VERY IMPORTANT TO 5774 04:09:04,032 --> 04:09:05,633 UNDERSTANDING HOW WE CAN BEST 5775 04:09:05,633 --> 04:09:08,770 SUCCEED IN THE SPACE. 5776 04:09:08,770 --> 04:09:10,438 SO WE'RE HOPING TO UTILIZE THOSE 5777 04:09:10,438 --> 04:09:16,578 THINGS TO FULLY SEE THE TASK 5778 04:09:16,578 --> 04:09:17,746 FORCE RECOMMENDATION ELEMENTS 5779 04:09:17,746 --> 04:09:19,547 AND THE REPORT WILL BE FINALIZED 5780 04:09:19,547 --> 04:09:20,048 IN JUNE. 5781 04:09:20,048 --> 04:09:23,518 THE INTENT IS TO PUBLISH AND 5782 04:09:23,518 --> 04:09:26,154 DISSEMINATE BY END OF JULY AND 5783 04:09:26,154 --> 04:09:27,288 REMEMBER WITH ALL THIS SAID 5784 04:09:27,288 --> 04:09:29,824 THERE'S NUMEROUS FEDERAL 5785 04:09:29,824 --> 04:09:31,393 AGENCIES THAT HAVE DIFFERENT 5786 04:09:31,393 --> 04:09:32,827 IMPLEMENTATION ACTIVITIES IN 5787 04:09:32,827 --> 04:09:33,294 DIFFERENT STAGES OF 5788 04:09:33,294 --> 04:09:34,529 IMPLEMENTATION AND THERE IS A 5789 04:09:34,529 --> 04:09:37,132 NED FOR US TO CONTINUE TO 5790 04:09:37,132 --> 04:09:38,600 REMEMBER THAT WE SHOULD ALWAYS 5791 04:09:38,600 --> 04:09:39,734 TOUCH BACK AND ASSESS AND MAKE 5792 04:09:39,734 --> 04:09:42,570 SURE WE'RE CONTINUING TO SEE THE 5793 04:09:42,570 --> 04:09:44,072 PROGRESS THAT'S ALREADY BEGUN TO 5794 04:09:44,072 --> 04:09:44,339 DATE. 5795 04:09:44,339 --> 04:09:49,411 SO WITH THAT, I WOULD LIKE TO 5796 04:09:49,411 --> 04:09:52,614 THANK THE EXPERTS IN OUR WORK 5797 04:09:52,614 --> 04:09:54,749 GROUP WHO TOOK ON QUITE A 5798 04:09:54,749 --> 04:09:57,652 SIZABLE TANK. 5799 04:09:57,652 --> 04:09:58,286 -- TASK. 5800 04:09:58,286 --> 04:10:01,022 SUE AND I HAVE BENEFITTED FROM 5801 04:10:01,022 --> 04:10:03,124 THEIR INPUT AND THOUGHTFUL 5802 04:10:03,124 --> 04:10:05,326 CONSIDERATION AND JUST WHAT IT 5803 04:10:05,326 --> 04:10:06,995 WENT TO DETERMINE WHAT THE STAT 5804 04:10:06,995 --> 04:10:08,797 WAS AND IN THE CONTEXT OF THE 5805 04:10:08,797 --> 04:10:10,465 EXPLICIT LANGUAGE IN THE 5806 04:10:10,465 --> 04:10:12,100 RECOMMENDATIONS THAT WERE 5807 04:10:12,100 --> 04:10:13,935 DRAFTED BY THE PRGLAC TASK 5808 04:10:13,935 --> 04:10:14,135 FORCE. 5809 04:10:14,135 --> 04:10:16,738 IN DOING SO IN SUCH A RAPID TIME 5810 04:10:16,738 --> 04:10:17,005 FRAME. 5811 04:10:17,005 --> 04:10:21,709 THEN I WOULD ALSO LIKE TO ECHO 5812 04:10:21,709 --> 04:10:25,914 THE WORDS REFERENCED IN REGARDS 5813 04:10:25,914 --> 04:10:27,081 TO NATASHA, YOUR EXPERTISE AND 5814 04:10:27,081 --> 04:10:29,317 ABILITY TO KEEP US ON TASK ARE 5815 04:10:29,317 --> 04:10:29,851 JUST INCREDIBLE. 5816 04:10:29,851 --> 04:10:33,388 I WOULD ALSO LIKE TO THANK THE 5817 04:10:33,388 --> 04:10:35,990 NICHD IS VERY LUCKY TO HAVE THE 5818 04:10:35,990 --> 04:10:38,960 EXPERTISE AS IT RELATES TO 5819 04:10:38,960 --> 04:10:41,629 PUBLIC POLICY AND ETHICS. 5820 04:10:41,629 --> 04:10:43,998 WE COULD NOT HAVE MADE THE 5821 04:10:43,998 --> 04:10:47,535 REPORT WITHOUT THEIR EXPERT 5822 04:10:47,535 --> 04:10:49,871 GUIDANCE AND I'LL STOP THERE AND 5823 04:10:49,871 --> 04:10:50,905 WE'LL BE HAPPY TO TAKE WHATEVER 5824 04:10:50,905 --> 04:11:01,349 QUESTIONS YOU MIGHT HAVE. 5825 04:11:02,417 --> 04:11:06,888 >> WE'RE OPEN FOR QUESTIONS. 5826 04:11:06,888 --> 04:11:07,989 I READ THE DRAFT REPORT AND IT'S 5827 04:11:07,989 --> 04:11:12,660 OUTSTANDING. 5828 04:11:12,660 --> 04:11:14,329 YOU SAID THINGS ARE IN PROGRESS 5829 04:11:14,329 --> 04:11:17,866 BUT THERE'S BEEN OBJECTIVES 5830 04:11:17,866 --> 04:11:19,167 COMPLETED TO. 5831 04:11:19,167 --> 04:11:22,070 OF THE 15 I ONLY REMEMBER ONE 5832 04:11:22,070 --> 04:11:23,338 THAT DIDN'T HAVE A WHOLE LOT 5833 04:11:23,338 --> 04:11:25,373 GOING ON YET BUT THE REST OF 5834 04:11:25,373 --> 04:11:28,243 THEM EITHER HAD BEEN COMPLETED 5835 04:11:28,243 --> 04:11:32,213 OR HAD SUBSTANTIAL PARTS OF THE 5836 04:11:32,213 --> 04:11:33,081 RECOMMENDATION AND PROGRESS. 5837 04:11:33,081 --> 04:11:37,552 AND SOME OF THE THINGS WERE 5838 04:11:37,552 --> 04:11:39,888 BEYOND OUR CONTROL SO THAT'S 5839 04:11:39,888 --> 04:11:40,255 UNDERSTANDABLE. 5840 04:11:40,255 --> 04:11:44,225 I WANT TO CONGRATULATE YOU AS 5841 04:11:44,225 --> 04:11:45,226 WELL AS ACKNOWLEDGE THE 5842 04:11:45,226 --> 04:11:46,427 EXCELLENT WORK FROM OUR OFFICE 5843 04:11:46,427 --> 04:11:47,529 OF LEGISLATION, PUBLIC POLICY 5844 04:11:47,529 --> 04:11:50,732 AND ETHICS AS YOU SAID TO GUIDE 5845 04:11:50,732 --> 04:11:52,600 YOU THROUGH THIS BUT IT'S REALLY 5846 04:11:52,600 --> 04:11:54,502 QUITE REMARKABLE AND IT'S BEEN A 5847 04:11:54,502 --> 04:11:58,339 PRIVILEGE TO SEE HOW IT HAS 5848 04:11:58,339 --> 04:11:59,574 EVOLVED FROM 2018 TO THE PRESENT 5849 04:11:59,574 --> 04:12:02,777 TIME. 5850 04:12:02,777 --> 04:12:04,646 IT'S GOING TO ALREADY CHANGE IN 5851 04:12:04,646 --> 04:12:08,316 PRACTICE BUT IT'S GOING TO BE 5852 04:12:08,316 --> 04:12:10,184 HUGELY IMPACTFUL. 5853 04:12:10,184 --> 04:12:13,388 >> I'D LIKE TO ADD YOU'RE 100% 5854 04:12:13,388 --> 04:12:15,390 CORRECT ABOUT THESE 5855 04:12:15,390 --> 04:12:17,692 RECOMMENDATIONS. 5856 04:12:17,692 --> 04:12:20,361 FOR THOSE WHO READ THE TASK 5857 04:12:20,361 --> 04:12:21,729 FORCE IMPLEMENTATION PLAN 5858 04:12:21,729 --> 04:12:24,332 REMEMBER IT'S A SIZABLE DOCUMENT 5859 04:12:24,332 --> 04:12:26,668 WITH SUB RECOMMENDATIONS AND SUB 5860 04:12:26,668 --> 04:12:31,272 YOU, SUB, RECOMMENDATIONS. 5861 04:12:31,272 --> 04:12:33,374 TO HIT THE RECOMMENDED THE TASK 5862 04:12:33,374 --> 04:12:35,109 FORCE SET US UP FOR A BIG 5863 04:12:35,109 --> 04:12:36,311 CHALLENGE. 5864 04:12:36,311 --> 04:12:38,012 I THINK THERE'S MULTIPLE FEDERAL 5865 04:12:38,012 --> 04:12:41,583 AGENCIES TO BE CONGRATULATED FOR 5866 04:12:41,583 --> 04:12:42,617 THE PROGRESS TO DATE AND THINK 5867 04:12:42,617 --> 04:12:46,220 WHEN YOU READ THROUGH THE MEMO 5868 04:12:46,220 --> 04:12:49,190 YOU'LL UNDERSTAND IT MORE 5869 04:12:49,190 --> 04:12:50,158 CLEARLY THERE ARE SUB PARTS WITH 5870 04:12:50,158 --> 04:12:54,295 NICE PROGRESS AND SOME IN 5871 04:12:54,295 --> 04:12:56,497 PROGRESS AND WE HAVEN'T HAD TIME 5872 04:12:56,497 --> 04:13:00,401 TO BE FULLY IMPLEMENTED AND 5873 04:13:00,401 --> 04:13:06,074 OTHERS REQUIRE ADDITIONAL 5874 04:13:06,074 --> 04:13:08,176 FUNDING, PERHAPS CONGRESSIONAL 5875 04:13:08,176 --> 04:13:10,211 ACTION TO BE IMPLEMENTED. 5876 04:13:10,211 --> 04:13:15,083 >> THERE ARE DOWN STREAM EFFECTS 5877 04:13:15,083 --> 04:13:18,720 NOT DIRECTLY CAPTURED BUT THE 5878 04:13:18,720 --> 04:13:22,624 RECENT NASEM REPORT ON SOME 5879 04:13:22,624 --> 04:13:26,127 LIABILITY CHALLENGES. 5880 04:13:26,127 --> 04:13:28,329 YOU WERE HELPING EDUCATE ME FROM 5881 04:13:28,329 --> 04:13:31,366 PHARMA AS TO WHAT THE CHALLENGES 5882 04:13:31,366 --> 04:13:37,438 ARE WHEN APPROVING DRUGS FOR 5883 04:13:37,438 --> 04:13:39,207 LACTATING PEOPLE AND THE AND A 5884 04:13:39,207 --> 04:13:41,109 HALF REPORT ARE UNFORTUNATELY 5885 04:13:41,109 --> 04:13:42,910 DIDN'T MENTION PRGLAC BUT SHOULD 5886 04:13:42,910 --> 04:13:44,746 HAVE, IT WAS STILL VERY 5887 04:13:44,746 --> 04:13:49,584 IMPORTANT FOR ACCOMPLISHING THE 5888 04:13:49,584 --> 04:13:51,152 OVER ALL GOAL OF INDICATING THAT 5889 04:13:51,152 --> 04:13:52,620 IN MANY SITUATIONS IT'S 5890 04:13:52,620 --> 04:13:54,422 PERFECTLY SAFE TO GIVE A 5891 04:13:54,422 --> 04:13:55,323 PREGNANT PERSON, IN FACT IT'S 5892 04:13:55,323 --> 04:14:00,962 BETTER TO GIVE A PREGNANT OR 5893 04:14:00,962 --> 04:14:03,364 LACTATING PERSON MEDICATION SHE 5894 04:14:03,364 --> 04:14:04,999 NEEDS FOR HER OWN HEALTH RATHER 5895 04:14:04,999 --> 04:14:07,001 THAN THE DEFAULT WHICH IS TAKE 5896 04:14:07,001 --> 04:14:09,637 NOTHING DURING THE PREGNANCY. 5897 04:14:09,637 --> 04:14:10,338 THERE'S A WIRED SPHERE OF 5898 04:14:10,338 --> 04:14:18,780 INFLUENCE I WOULD SAY. 5899 04:14:18,780 --> 04:14:19,614 SO QUESTIONS. 5900 04:14:19,614 --> 04:14:23,451 >> BEFORE WE GO TO QUESTIONS, TO 5901 04:14:23,451 --> 04:14:25,019 YOUR POINT FOR THOSE WHO READ 5902 04:14:25,019 --> 04:14:27,321 THE MEMO, YOU'LL SEE THERE WERE 5903 04:14:27,321 --> 04:14:28,756 SPECIFIC CALLS OUT FROM THE WORK 5904 04:14:28,756 --> 04:14:31,159 GROUP ABOUT THE FACT THAT WE'RE 5905 04:14:31,159 --> 04:14:32,727 TALKING ABOUT EDUCATION AND 5906 04:14:32,727 --> 04:14:33,661 COMMUNICATION AND OUTREACH IS AS 5907 04:14:33,661 --> 04:14:35,396 IMPORTANT TO TALK ABOUT THE 5908 04:14:35,396 --> 04:14:39,934 IMPACT OF NOT TAKING NECESSARY 5909 04:14:39,934 --> 04:14:40,334 MEDICATIONS. 5910 04:14:40,334 --> 04:14:42,704 SUCH AS MUCH AS IT IS ABOUT 5911 04:14:42,704 --> 04:14:44,138 TAKING MEDICINES OR THE RISK 5912 04:14:44,138 --> 04:14:45,239 THERE MAY BE WITH TAKING 5913 04:14:45,239 --> 04:14:45,540 MEDICINES. 5914 04:14:45,540 --> 04:14:47,141 I THINK THIS IS AN IMPORTANT 5915 04:14:47,141 --> 04:14:51,546 PART YOU'LL SEE IN THE DETAILS 5916 04:14:51,546 --> 04:14:53,781 OF THE REPORT. 5917 04:14:53,781 --> 04:14:56,317 FOR THE NASEM REPORT, THAT WORK 5918 04:14:56,317 --> 04:14:57,719 IS NECESSARY TO INFORM NEXT 5919 04:14:57,719 --> 04:14:58,653 STEPS. 5920 04:14:58,653 --> 04:15:02,290 SO SOME OF THOSE RECOMMENDATIONS 5921 04:15:02,290 --> 04:15:04,425 REQUIRED THE FOUNDATIONAL WORK 5922 04:15:04,425 --> 04:15:04,992 IN ORDER TO GET TO THE NEXT 5923 04:15:04,992 --> 04:15:10,665 PHASE. 5924 04:15:10,665 --> 04:15:13,835 >> GOOD TO SEE YOU CHRISTICHRIS 5925 04:15:13,835 --> 04:15:15,369 NICE TO MEET YOU, SUE. 5926 04:15:15,369 --> 04:15:18,840 FIRST, CONGRATULATIONS TO NICHD 5927 04:15:18,840 --> 04:15:20,108 FOR HAVING THE IMPLEMENTATION 5928 04:15:20,108 --> 04:15:21,309 WORKING GROUP. 5929 04:15:21,309 --> 04:15:22,376 I'VE SEEN A WHOLE LOT OF TASK 5930 04:15:22,376 --> 04:15:25,580 FORCE AND WORKING GROUPS THAT DO 5931 04:15:25,580 --> 04:15:27,081 TALKING BUT NOT SO MUCH 5932 04:15:27,081 --> 04:15:27,448 IMPLEMENTATION. 5933 04:15:27,448 --> 04:15:30,818 SO CONGRATULATIONS AND THANKS 5934 04:15:30,818 --> 04:15:31,586 FOR THE WORK. 5935 04:15:31,586 --> 04:15:34,122 THE PROCESS QUESTION AND THEN 5936 04:15:34,122 --> 04:15:34,522 CONTENT QUESTION. 5937 04:15:34,522 --> 04:15:36,691 PROCESS QUESTION IS THIS IS A 5938 04:15:36,691 --> 04:15:39,360 DYNAMIC PROCESS. 5939 04:15:39,360 --> 04:15:40,828 YOU'VE SHOWN US THE THINGS 5940 04:15:40,828 --> 04:15:44,198 ALREADY IN PLACE AND THINGS THAT 5941 04:15:44,198 --> 04:15:45,500 WILL BE IN PROGRESS. 5942 04:15:45,500 --> 04:15:52,140 SO DOES THIS GROUP CONTINUE ON 5943 04:15:52,140 --> 04:15:56,711 UNTIL THERE'S AN END GOAL FOR 5944 04:15:56,711 --> 04:15:57,411 IMPLEMENTATION OR DRIVING TRUE 5945 04:15:57,411 --> 04:15:58,112 TO IMPLEMENT AS MUCH AS 5946 04:15:58,112 --> 04:15:58,379 POSSIBLE. 5947 04:15:58,379 --> 04:16:04,185 THAT'S MY PROCESS QUESTION. 5948 04:16:04,185 --> 04:16:06,320 >> WE HAVE SATISFIED THE 5949 04:16:06,320 --> 04:16:07,955 REQUIREMENTS AS LAID OUT IN THE 5950 04:16:07,955 --> 04:16:08,523 LEGISLATION. 5951 04:16:08,523 --> 04:16:09,924 WE DO NOT HAVE AUTHORITY BEYOND 5952 04:16:09,924 --> 04:16:13,995 THAT TO CONTINUE TO MONITOR THE 5953 04:16:13,995 --> 04:16:16,164 PROGRESS MADE ON SOME OF THE 5954 04:16:16,164 --> 04:16:16,531 IMPLEMENTATION. 5955 04:16:16,531 --> 04:16:17,999 THAT ACTION WOULD NEED TO BE 5956 04:16:17,999 --> 04:16:20,268 TAKEN TO CONTINUE THE ACTIVITY. 5957 04:16:20,268 --> 04:16:22,937 >> AND SO THEN THAT'S A QUESTION 5958 04:16:22,937 --> 04:16:24,939 I HAVE FOR NIH. 5959 04:16:24,939 --> 04:16:27,141 IS THERE SOMETHING WE DO TO 5960 04:16:27,141 --> 04:16:29,343 CONTINUE TO MOVE IT FORWARD? 5961 04:16:29,343 --> 04:16:32,680 OR DO WE END IT AT THIS POINT? 5962 04:16:32,680 --> 04:16:34,682 WHAT'S OUR PROCESS FOR 5963 04:16:34,682 --> 04:16:45,193 IMPLEMENTATION WORKING GROUPS? 5964 04:16:48,729 --> 04:16:50,464 >> THIS IS SOMETHING WE HAVE 5965 04:16:50,464 --> 04:16:53,434 BEEN THINKING ABOUT AND I THINK 5966 04:16:53,434 --> 04:16:55,069 AS SOON MENTIONED WHEN THIS 5967 04:16:55,069 --> 04:16:58,639 REPORT COMES OUT THAT WILL 5968 04:16:58,639 --> 04:16:59,273 FULFILL THE CONGRESSIONAL 5969 04:16:59,273 --> 04:17:01,309 REQUIREMENT OF TRACKING. 5970 04:17:01,309 --> 04:17:03,377 I THINK WHERE WE THOUGHT ABOUT 5971 04:17:03,377 --> 04:17:05,913 IS HOW AND WHEN THIS SHOULD 5972 04:17:05,913 --> 04:17:06,180 CONTINUE. 5973 04:17:06,180 --> 04:17:12,753 I THINK WE ALL FELT WE HAVE 5974 04:17:12,753 --> 04:17:13,588 ASSESSED WHERE THE 5975 04:17:13,588 --> 04:17:14,689 RECOMMENDATIONS ARE AND 5976 04:17:14,689 --> 04:17:15,957 CONTINUING IN THE FALL THERE 5977 04:17:15,957 --> 04:17:18,593 WILL LIKELY NOT BE CHANGES BUT 5978 04:17:18,593 --> 04:17:21,195 WE HAVE THOUGHT ABOUT PERHAPS A 5979 04:17:21,195 --> 04:17:24,999 YEAR OR TWO YEARS AFTER THAT IT 5980 04:17:24,999 --> 04:17:26,567 MIGHT BE USEFUL TO CONTINUE OR 5981 04:17:26,567 --> 04:17:28,135 TO CREATE ANOTHER WORKING GROUP 5982 04:17:28,135 --> 04:17:34,041 TO DO A SIMILAR ASSESSMENT TO 5983 04:17:34,041 --> 04:17:36,510 SEE IF THERE HAVE BEEN CHANGES 5984 04:17:36,510 --> 04:17:39,180 BUT WE'RE THINKING LONGER TERM 5985 04:17:39,180 --> 04:17:42,250 ABOUT WHEN TO PERHAPS DO A 5986 04:17:42,250 --> 04:17:42,683 SECOND ASSESSMENT. 5987 04:17:42,683 --> 04:17:52,126 >> I'M GLAD BECAUSE YOU CAN SEE 5988 04:17:52,126 --> 04:17:53,461 MOVEMENT IN THE PROCESS AND 5989 04:17:53,461 --> 04:17:55,129 SOMETIMES THEY CAN FALL THROUGH 5990 04:17:55,129 --> 04:17:57,965 THE CRACKS. 5991 04:17:57,965 --> 04:18:00,268 >> MY QUICK CONTENT QUESTION IS 5992 04:18:00,268 --> 04:18:03,070 WHEN YOU SAY MEDICATIONS, WERE 5993 04:18:03,070 --> 04:18:04,272 SUPPLEMENTS INCLUDED? 5994 04:18:04,272 --> 04:18:07,775 A LOT OF PREGNANT AND LACTATING 5995 04:18:07,775 --> 04:18:10,845 WOMEN TAKE SO MANY SUPPLEMENTS. 5996 04:18:10,845 --> 04:18:13,614 WAS IT ONLY U.S.-APPROVED 5997 04:18:13,614 --> 04:18:14,048 MEDICATIONS? 5998 04:18:14,048 --> 04:18:15,950 >> THERE WAS NOT THE QUESTION IN 5999 04:18:15,950 --> 04:18:19,553 THE PRGLAC AS TO WHAT THE FOCUS 6000 04:18:19,553 --> 04:18:28,896 AREAS SHOULD BE. 6001 04:18:28,896 --> 04:18:31,132 THERE WERE PERFORM THERAPEUTICS 6002 04:18:31,132 --> 04:18:33,467 AND IT WOULD BE APPROPRIATE FOR 6003 04:18:33,467 --> 04:18:37,538 US TO WHAT THE PRIMARY INTENTION 6004 04:18:37,538 --> 04:18:40,308 WAS UNDER THE ACT WHEREIN IT WAS 6005 04:18:40,308 --> 04:18:42,610 FOCUSSED ON THOSE THERAPEUTICS 6006 04:18:42,610 --> 04:18:43,444 AND REGULATED THROUGH THE FOOD 6007 04:18:43,444 --> 04:18:49,650 AND DRUG ADMINISTRATION. 6008 04:18:49,650 --> 04:18:52,553 >> THE OTHER THING TO SAY AND 6009 04:18:52,553 --> 04:18:54,422 THANK YOU, CHRISTINA, GREAT 6010 04:18:54,422 --> 04:18:56,557 RESPONSE. 6011 04:18:56,557 --> 04:18:58,659 WE HAVE BEEN WORKING AT NIH 6012 04:18:58,659 --> 04:19:01,262 THERE'S THE OFFICE OF DIETARY S 6013 04:19:01,262 --> 04:19:06,701 AND SO THEY WORK TO COORDINATE 6014 04:19:06,701 --> 04:19:10,671 CO-FUND DRIVE AGENDAS AROUND 6015 04:19:10,671 --> 04:19:15,376 IMPLEMENT -- SUPPLEMENTS AND 6016 04:19:15,376 --> 04:19:17,278 THEIR USE AND THEY TALKED ABOUT 6017 04:19:17,278 --> 04:19:25,853 THE IMPROVE INITIATIVE AND 6018 04:19:25,853 --> 04:19:26,554 TALKING ABOUT DIETARY 6019 04:19:26,554 --> 04:19:29,056 SUPPLEMENTS AS IT RELATES TO 6020 04:19:29,056 --> 04:19:30,157 MATERNAL HEALTH. 6021 04:19:30,157 --> 04:19:32,526 MORE TO COME BUT IT'S A PARTNER 6022 04:19:32,526 --> 04:19:42,837 SIMILAR TO OBSSR. 6023 04:19:50,444 --> 04:19:52,680 >> I'M CHIEF OF THE OBSTETRIC 6024 04:19:52,680 --> 04:19:57,218 AND PHARMACOLOGY BRANCH. 6025 04:19:57,218 --> 04:20:01,889 THE REQUEST FOR INFORMATION 6026 04:20:01,889 --> 04:20:03,124 INCLUDED VACCINES WITH DRUGS. 6027 04:20:03,124 --> 04:20:05,026 WE'RE WORKING THROUGH HOW TO 6028 04:20:05,026 --> 04:20:06,360 PROCESS THAT AND HANDLE IT. 6029 04:20:06,360 --> 04:20:07,995 WE HAVE BEEN WORKING WITH THE 6030 04:20:07,995 --> 04:20:11,332 OFFICE OF DIETARY SUPPLEMENTS ON 6031 04:20:11,332 --> 04:20:14,668 A PERINATAL PHARMACOLOGY 6032 04:20:14,668 --> 04:20:15,970 PROJECT. 6033 04:20:15,970 --> 04:20:19,707 THAT WILL BE INVOLVED IN LOOKING 6034 04:20:19,707 --> 04:20:20,975 AT THE RESPONSE TO THE RFI. 6035 04:20:20,975 --> 04:20:28,816 GREAT QUESTION. 6036 04:20:28,816 --> 04:20:30,518 >> I WANT TO ACKNOWLEDGE AND 6037 04:20:30,518 --> 04:20:33,821 THANK PROGRAM STAFF INVOLVED IN 6038 04:20:33,821 --> 04:20:37,058 THE PROCESS AND AS IMPLIED THE 6039 04:20:37,058 --> 04:20:37,691 FOLLOW-UP ACTIVITIES A LOT OF 6040 04:20:37,691 --> 04:20:40,661 THAT WILL BE SHEPHERDED BY THE 6041 04:20:40,661 --> 04:20:43,364 PROGRAM STAFF AND CALLING OUT 6042 04:20:43,364 --> 04:20:48,803 THE OBSTETRIC AND PHARMACOLOGY 6043 04:20:48,803 --> 04:20:50,438 BARRAGE AND THEY'VE WORKED WELL 6044 04:20:50,438 --> 04:20:51,405 TOGETHER AND WITH LAURA'S 6045 04:20:51,405 --> 04:21:01,549 OFFICE. 6046 04:21:05,753 --> 04:21:07,588 >> I HAVE A QUESTION WHETHER THE 6047 04:21:07,588 --> 04:21:10,491 CLINICAL TRIAL WILL APPLY TO 6048 04:21:10,491 --> 04:21:13,394 THEM WHAT'S THE DRIVER FOR THE 6049 04:21:13,394 --> 04:21:13,627 CHANGE? 6050 04:21:13,627 --> 04:21:16,864 WAS IT BECAUSE OF THE 6051 04:21:16,864 --> 04:21:18,132 RESEARCHERS PROFESSIONAL 6052 04:21:18,132 --> 04:21:20,167 ORGANIZATIONS ON THE WOMEN WANT 6053 04:21:20,167 --> 04:21:20,434 THIS? 6054 04:21:20,434 --> 04:21:23,003 I LIKE THE PIECE OF WORK JUST 6055 04:21:23,003 --> 04:21:24,405 WONDERING AND FOR THE 6056 04:21:24,405 --> 04:21:25,039 IMPLEMENTATION HOW THE WOMEN GOT 6057 04:21:25,039 --> 04:21:31,112 INVOLVED. 6058 04:21:31,112 --> 04:21:32,713 >> I'LL START. 6059 04:21:32,713 --> 04:21:35,583 I THINK SUE SPOKE ABOUT IT AT 6060 04:21:35,583 --> 04:21:37,184 THE BACKGROUND. 6061 04:21:37,184 --> 04:21:40,688 FOR DECADES WE'VE BEEN 6062 04:21:40,688 --> 04:21:42,289 PRACTICING MEDICINE AND 6063 04:21:42,289 --> 04:21:44,792 UTILIZING EXPERIMENTS FOR EVERY 6064 04:21:44,792 --> 04:21:46,660 NEW PREGNANT OR LACTATING 6065 04:21:46,660 --> 04:21:48,462 PATIENT WHO NEEDS TO TAKE A 6066 04:21:48,462 --> 04:21:50,131 THERAPEUTIC AND THERE'S BEEN 6067 04:21:50,131 --> 04:21:52,299 LIMITED STUDIES TO EITHER A, 6068 04:21:52,299 --> 04:21:55,369 INCLUDE PREGNANT PATIENTS OR 6069 04:21:55,369 --> 04:21:56,270 STUDY FUNDING FOR THERE TO BE 6070 04:21:56,270 --> 04:21:58,239 TRIALS IN PREGNANT WOMEN OR 6071 04:21:58,239 --> 04:21:59,607 LACTATING WOMEN. 6072 04:21:59,607 --> 04:22:03,077 SO AS THE A CLEAR AND DIRE NEED. 6073 04:22:03,077 --> 04:22:08,282 THIS TASK FORCE WAS IMPLEMENTED 6074 04:22:08,282 --> 04:22:11,118 PRIOR TO THE COVID PANDEMIC. 6075 04:22:11,118 --> 04:22:14,388 THOUGH WE MAKE NO REFERENCE TO 6076 04:22:14,388 --> 04:22:16,590 IT IN OUR DOCUMENT ELUCIDATED 6077 04:22:16,590 --> 04:22:18,459 THOSE WHO NEVER THOUGHT ABOUT 6078 04:22:18,459 --> 04:22:20,961 WHAT HAPPENED WHEN THEY'RE MOM 6079 04:22:20,961 --> 04:22:21,929 WAS PREGNANT WITH THEM AND 6080 04:22:21,929 --> 04:22:25,199 WHETHER THEY NEEDED SOMETHING 6081 04:22:25,199 --> 04:22:27,201 NOT STUDIED AND WHAT THAT MEANS. 6082 04:22:27,201 --> 04:22:32,806 THERE'S A HUGE VOID AND CLEAR 6083 04:22:32,806 --> 04:22:33,007 NEED. 6084 04:22:47,121 --> 04:22:47,121 6: 6085 04:22:48,923 --> 04:22:52,459 THERE'S A PATH FORWARD THAT'S 6086 04:22:52,459 --> 04:22:53,928 PRAGMATIC TO HAVE INFORMATION 6087 04:22:53,928 --> 04:22:55,362 VALUABLE TO INFORM NOT ONLY 6088 04:22:55,362 --> 04:22:57,798 THERAPEUTICS DEVELOPMENT BUT 6089 04:22:57,798 --> 04:23:00,768 CLINICAL PRACTICE AND ULTIMATELY 6090 04:23:00,768 --> 04:23:02,336 ENSURE THE SAFETY OF THE 6091 04:23:02,336 --> 04:23:02,603 PATIENTS. 6092 04:23:02,603 --> 04:23:04,505 I THINK THERE'S MANY PIECES TO 6093 04:23:04,505 --> 04:23:05,639 IT. 6094 04:23:05,639 --> 04:23:09,176 SUE, PLEASE ADD ON AND OTHER 6095 04:23:09,176 --> 04:23:09,944 COLLEAGUES FROM NICHD FEEL FREE 6096 04:23:09,944 --> 04:23:10,678 TO ADD UPON. 6097 04:23:10,678 --> 04:23:13,247 >> IF YOU LOOK AT THE ORIGINAL 6098 04:23:13,247 --> 04:23:14,748 LEGISLATION WE DONT HAVE A LOT 6099 04:23:14,748 --> 04:23:17,051 OF RESEARCH GROUPS PART OF A LOB 6100 04:23:17,051 --> 04:23:22,089 THREEI II II IING -- LOBBYING F 6101 04:23:22,089 --> 04:23:23,891 EFFORT. 6102 04:23:23,891 --> 04:23:34,401 IT'S FROM A GRASSROOTS EFFORT 6103 04:23:49,416 --> 04:23:51,385 CDC HAS TALKED ABOUT THE BEST 6104 04:23:51,385 --> 04:24:02,062 WAY TO ENGAGE INDIVIDUALS THEY 6105 04:24:03,163 --> 04:24:04,398 HAVE TO BE A CONTINUED PART 6106 04:24:04,398 --> 04:24:05,032 MOVING FORWARD. 6107 04:24:05,032 --> 04:24:06,367 >> I HAVE A COMMENT. 6108 04:24:06,367 --> 04:24:08,202 I WANTED TO THANK YOU SO MUCH 6109 04:24:08,202 --> 04:24:09,370 FOR THE WORK. 6110 04:24:09,370 --> 04:24:11,672 FOR THOSE DOING RESEARCH IN 6111 04:24:11,672 --> 04:24:13,140 OBSTETRICS ON PREGNANT PATIENTS 6112 04:24:13,140 --> 04:24:16,377 FOR DECADES WE APPLAUD YOU AND 6113 04:24:16,377 --> 04:24:21,615 THOSE PRACTICIE IING OBSTETRICI 6114 04:24:21,615 --> 04:24:22,116 THANK YOU BECAUSE IT'S 6115 04:24:22,116 --> 04:24:23,617 INFORMATION WE NEED. 6116 04:24:23,617 --> 04:24:34,128 I HAVE AN ADDITIONAL QUESTION. 6117 04:24:37,931 --> 04:24:39,767 THERE'S A QUESTION OF STUDYING 6118 04:24:39,767 --> 04:24:42,469 THESE AND LOOKING AT THE R25, 6119 04:24:42,469 --> 04:24:45,005 WOULD THAT BE SOMETHING TO TRAIN 6120 04:24:45,005 --> 04:24:49,810 FOLKS FOR OBSTETRIC ADJACENT TO 6121 04:24:49,810 --> 04:24:51,378 LEARN HOW TO DO THIS PROPERLY 6122 04:24:51,378 --> 04:24:53,280 AND MAYBE NOT GET A Ph.D. BUT 6123 04:24:53,280 --> 04:24:56,550 MAYBE A MASTER'S DEGREE TO 6124 04:24:56,550 --> 04:24:57,484 CONTINUE TO INCORPORATE THESE 6125 04:24:57,484 --> 04:25:02,523 PEOPLE IN OUR RESEARCH. 6126 04:25:02,523 --> 04:25:03,891 >> AND AARON MAY WANT TO COMMENT 6127 04:25:03,891 --> 04:25:10,364 BUT BOTH BRANCHES THINK ABOUT 6128 04:25:10,364 --> 04:25:10,531 IT. 6129 04:25:10,531 --> 04:25:15,169 ONE THING THAT AARON BRANCH HAS 6130 04:25:15,169 --> 04:25:18,839 DONE THE OBSTETRIC AND PEDIATRIC 6131 04:25:18,839 --> 04:25:20,441 PHARMACOLOGY WERE ISOLATE AND 6132 04:25:20,441 --> 04:25:23,811 SILOED AND BROUGHT THEM TOGETHER 6133 04:25:23,811 --> 04:25:26,413 RECOGNIZING THE PHARMACOLOGIC 6134 04:25:26,413 --> 04:25:27,481 SCIENCE UNDER PINS BOTH. 6135 04:25:27,481 --> 04:25:29,016 THERE'S A GREATER INTERACTION 6136 04:25:29,016 --> 04:25:31,385 WITH THAT GROUP AND AS YOU HEARD 6137 04:25:31,385 --> 04:25:38,859 EARLIER FROM LESLY SAMEDY BATES 6138 04:25:38,859 --> 04:25:39,860 THEY'RE INCLUDING BOTH AND AARON 6139 04:25:39,860 --> 04:25:41,328 DO YOU HAVE MORE TO ADD? 6140 04:25:41,328 --> 04:25:44,298 >> THAT WAS A GOOD SUMMARY. 6141 04:25:44,298 --> 04:25:45,799 WITH HAVE BEEN WORKING TO 6142 04:25:45,799 --> 04:25:49,002 ENCOURAGE FOLKS TO COME IN WITH 6143 04:25:49,002 --> 04:25:51,939 MATERNAL PHARMACOLOGY T32 6144 04:25:51,939 --> 04:25:56,210 APPLICATIONS AS WELL AS THINKING 6145 04:25:56,210 --> 04:26:01,448 ABOUT WAYS AS THE R25. 6146 04:26:01,448 --> 04:26:03,016 YOU AND GETTING PEOPLE TRAINED 6147 04:26:03,016 --> 04:26:04,451 ENOUGH TO BE ABLE TO UNDERSTAND 6148 04:26:04,451 --> 04:26:10,424 THE LANGUAGE IS CRITICAL. 6149 04:26:10,424 --> 04:26:12,860 AND THERE'S A TRAINING MECHANISM 6150 04:26:12,860 --> 04:26:13,927 COOPERATIVE AGREEMENT A LOT OF 6151 04:26:13,927 --> 04:26:16,697 INSTITUTES ARE STARTING TO USE 6152 04:26:16,697 --> 04:26:16,997 CREATIVELY. 6153 04:26:16,997 --> 04:26:19,533 WE'VE TALKED WITH LESLY ON 6154 04:26:19,533 --> 04:26:21,368 DIFFERENT WAYS TO DO THAT AND 6155 04:26:21,368 --> 04:26:23,704 ECHO WHAT CHRISTINA AND SUE SAID 6156 04:26:23,704 --> 04:26:24,838 THERE'S NOT A LOT OF RESOURCES 6157 04:26:24,838 --> 04:26:27,374 TO DO THIS AT THIS POINT. 6158 04:26:27,374 --> 04:26:29,176 THAT HAS BEEN ONE OF THE MAJOR 6159 04:26:29,176 --> 04:26:29,476 CHALLENGES. 6160 04:26:29,476 --> 04:26:32,846 WE HAVE BEEN ABLE TO MOVE MANY 6161 04:26:32,846 --> 04:26:36,316 THINGS FORWARD THANKFUL TO DIANA 6162 04:26:36,316 --> 04:26:38,051 FOR ALLOCATED RESOURCES TO MOVE 6163 04:26:38,051 --> 04:26:40,687 FORWARD WITH THE THINGS WE'VE 6164 04:26:40,687 --> 04:26:46,393 BEEN ABLE TO GET PROGRESS. 6165 04:26:46,393 --> 04:26:50,731 >> TO TAG ON TO THAT, A LOT OF 6166 04:26:50,731 --> 04:26:52,132 THE MEDICATIONS THAT ARE 6167 04:26:52,132 --> 04:26:54,368 PRESCRIBED TO WOMEN ARE RELATED 6168 04:26:54,368 --> 04:26:57,304 TO OTHER HEALTH ISSUES, MENTAL 6169 04:26:57,304 --> 04:26:59,072 HEALTH, CARDIOVASCULAR HEALTH. 6170 04:26:59,072 --> 04:27:04,511 HOW MUCH DO YOU INTEGRATE THIS 6171 04:27:04,511 --> 04:27:05,212 WITH THE INSTITUTES THAT COVERED 6172 04:27:05,212 --> 04:27:11,919 THAT RESEARCH? 6173 04:27:11,919 --> 04:27:14,288 >> WE RECENTLY CREATED UNDER THE 6174 04:27:14,288 --> 04:27:17,090 UMBRELLA OF THE MATERNAL AND 6175 04:27:17,090 --> 04:27:21,328 CHILD PHARMACOLOGY SUB GROUP AND 6176 04:27:21,328 --> 04:27:26,667 STARTING TO BUILD A COALITION OF 6177 04:27:26,667 --> 04:27:28,469 INDIVIDUALS AND THE OFFICE OF 6178 04:27:28,469 --> 04:27:31,371 DIETARY SUPPLEMENTS ARE 6179 04:27:31,371 --> 04:27:32,840 REPRESENTED THIS. 6180 04:27:32,840 --> 04:27:35,108 FOR THE MEETING WE'LL HOLD IN 6181 04:27:35,108 --> 04:27:37,644 JULY WE HAVE MODERATORS FROM 6182 04:27:37,644 --> 04:27:38,979 EACH OF THE RELEVANT INSTITUTES 6183 04:27:38,979 --> 04:27:43,717 THAT COVER THAT DISEASE AREA. 6184 04:27:43,717 --> 04:27:47,688 WE ARE VERY MUCH DRAWING A 6185 04:27:47,688 --> 04:27:49,256 DISTINCTION FOR TECHNICAL 6186 04:27:49,256 --> 04:27:50,524 REASONS FOR PREGNANCY CONDITIONS 6187 04:27:50,524 --> 04:27:53,694 OF LACTATION VERSUS THOSE 6188 04:27:53,694 --> 04:27:56,563 CO-OCCURRING DURING PREGNANCY 6189 04:27:56,563 --> 04:27:59,700 AND LACTATION. 6190 04:27:59,700 --> 04:28:02,336 MOVING FORWARD WILL HAVE TO BE A 6191 04:28:02,336 --> 04:28:04,004 TRANS-NIH EFFORT AND EXCITING TO 6192 04:28:04,004 --> 04:28:04,671 SEE SO MANY THINGS IN WOMEN'S 6193 04:28:04,671 --> 04:28:10,544 HEALTH NOW. 6194 04:28:10,544 --> 04:28:11,678 >> FOR THOSE WHO READ THROUGH 6195 04:28:11,678 --> 04:28:14,081 THE MEMO IT'S RELATED TO CLUSTER 6196 04:28:14,081 --> 04:28:16,350 B IN PARTICULAR ON OUTREACH 6197 04:28:16,350 --> 04:28:20,454 TRAINING AND CAREER DEVELOPMENT. 6198 04:28:20,454 --> 04:28:23,991 THE WORK GROUP HAD CAREFUL 6199 04:28:23,991 --> 04:28:26,260 PLACED COMMENTS SPEAKING TO THAT 6200 04:28:26,260 --> 04:28:26,460 POINT. 6201 04:28:26,460 --> 04:28:28,428 THIS IS IN FACT A NEED THAT GOES 6202 04:28:28,428 --> 04:28:31,231 BEYOND OBSTETRICS AND LACTATION 6203 04:28:31,231 --> 04:28:32,733 RESEARCH. 6204 04:28:32,733 --> 04:28:34,334 IT GOES INTO EVERY THERAPEUTIC 6205 04:28:34,334 --> 04:28:35,569 WHERE WE'RE DEVELOPING MEDICINES 6206 04:28:35,569 --> 04:28:37,437 WHERE YOU COULD HAVE AN 6207 04:28:37,437 --> 04:28:39,640 UNDERLYING CONDITION AND BECOME 6208 04:28:39,640 --> 04:28:39,907 PREGNANT. 6209 04:28:39,907 --> 04:28:43,911 SO AS THE A DEFINITIVE NEED FOR 6210 04:28:43,911 --> 04:28:45,012 THIS TO BE LOOKED AT FROM ACROSS 6211 04:28:45,012 --> 04:28:50,551 INSTITUTES. 6212 04:28:50,551 --> 04:28:53,754 >> I WANTED TO FOLLOW UP ON THE 6213 04:28:53,754 --> 04:28:57,457 PREVIOUS QUESTION. 6214 04:28:57,457 --> 04:28:58,458 THERE ARE ALSO CONDITIONS WHERE 6215 04:28:58,458 --> 04:29:00,127 A WOMAN HAS AN AUTO IMMUNE 6216 04:29:00,127 --> 04:29:02,362 DISEASE AND HAS TO GO OFF 6217 04:29:02,362 --> 04:29:03,363 MEDICATION FOR WHATEVER REASON 6218 04:29:03,363 --> 04:29:06,500 WHEN SHE BECOMES PREGNANT AND 6219 04:29:06,500 --> 04:29:08,969 THE SYMPTOMS GO AWAY DUE TO 6220 04:29:08,969 --> 04:29:12,739 HORMONAL OR WE DON'T KNOW WHY 6221 04:29:12,739 --> 04:29:16,376 SUCH AS RHEUMATOID ARTHRITIS AND 6222 04:29:16,376 --> 04:29:17,978 AFTER PREGNANCY COMES BACK WITH 6223 04:29:17,978 --> 04:29:19,313 A VENGEANCE. 6224 04:29:19,313 --> 04:29:21,214 WHETHER THEY CONTINUED ON 6225 04:29:21,214 --> 04:29:22,349 MEDICATION WHETHER LOW DOSE TO 6226 04:29:22,349 --> 04:29:28,689 REDUCE THE SYMPTOMS THAT COME 6227 04:29:28,689 --> 04:29:30,223 BACK SEVERELY AFTER PREGNANCY IS 6228 04:29:30,223 --> 04:29:32,392 ANOTHER WINDOW TO UNDERSTAND HOW 6229 04:29:32,392 --> 04:29:35,629 MEDICATIONS MAY HAVE BEEN BETTER 6230 04:29:35,629 --> 04:29:46,173 OFF CONTINUED DURING PREGNANCY. 6231 04:29:49,109 --> 04:29:52,412 >> WE NEED TO UNDERSTAND THE 6232 04:29:52,412 --> 04:29:55,315 RISK COMPONENT FOR DECADES WE 6233 04:29:55,315 --> 04:29:57,417 STUDIED THE RISK COMPONENT. 6234 04:29:57,417 --> 04:30:00,520 WE HAVEN'T STUDIED THE METH CAL 6235 04:30:00,520 --> 04:30:03,056 OR PHARMACOLOGY COMPONENT AND 6236 04:30:03,056 --> 04:30:04,224 RELEVANT DOSING COMMENT AND WE 6237 04:30:04,224 --> 04:30:06,660 NEED TO GO BEYOND JUST SAFETY 6238 04:30:06,660 --> 04:30:12,099 AND REALLY LOOK TO THE 6239 04:30:12,099 --> 04:30:14,701 UNDERSTANDING AS IT RELATES 6240 04:30:14,701 --> 04:30:16,503 ACROSS TRIMESTERS AND RELATES TO 6241 04:30:16,503 --> 04:30:17,871 PHARMACOLOGY AND THE EFFECTIVE 6242 04:30:17,871 --> 04:30:20,173 DOSE GIVEN DIFFERENT CONDITIONS 6243 04:30:20,173 --> 04:30:22,709 AND DIFFERENT PHASES OF 6244 04:30:22,709 --> 04:30:22,976 PREGNANCY. 6245 04:30:22,976 --> 04:30:23,243 THANK YOU. 6246 04:30:23,243 --> 04:30:28,849 GOOD COMMENT. 6247 04:30:28,849 --> 04:30:31,385 >> OKAY. 6248 04:30:31,385 --> 04:30:35,055 ANY FURTHER DISCUSSION? 6249 04:30:35,055 --> 04:30:40,794 IF NOT I'M GOING TO THANK 6250 04:30:40,794 --> 04:30:42,496 DOCTORS BUCCI-RECHTWEG AND 6251 04:30:42,496 --> 04:30:43,230 ABDEL-RAHMAN AND A GREAT 6252 04:30:43,230 --> 04:30:44,164 PRESENTATION AND THE REPORT WILL 6253 04:30:44,164 --> 04:30:47,000 BE OUT THIS SUMMER. 6254 04:30:47,000 --> 04:30:51,872 FLOU -- NOW WE NEED A MOTION FOR 6255 04:30:51,872 --> 04:30:55,008 APPROVAL OF THE WORKING GROUP'S 6256 04:30:55,008 --> 04:30:55,375 REPORT. 6257 04:30:55,375 --> 04:30:56,343 CAN SOMEONE MOVE. 6258 04:30:56,343 --> 04:30:58,645 THANK YOU, CYNTHIA. 6259 04:30:58,645 --> 04:31:00,280 >> SECOND. 6260 04:31:00,280 --> 04:31:03,383 >> NOW, WE'RE GOING TO VOTE 6261 04:31:03,383 --> 04:31:06,286 USING OUR HANDS AND GENEVIEVE 6262 04:31:06,286 --> 04:31:10,090 AND CHRISTINA, CAN VOTE 6263 04:31:10,090 --> 04:31:11,258 ELECTRONICALLY. 6264 04:31:11,258 --> 04:31:17,931 IF YOU APPROVE -- 6265 04:31:17,931 --> 04:31:28,341 >> DO I NEED TO ABSTAIN? 6266 04:31:51,164 --> 04:31:52,432 >> EXCELLENT. 6267 04:31:52,432 --> 04:31:52,699 THANK YOU. 6268 04:31:52,699 --> 04:32:03,243 >> 13 IN FAVOR, ONE ABSTENTION. 6269 04:32:17,791 --> 04:32:18,658 >> THANK YOU VERY MUCH. 6270 04:32:18,658 --> 04:32:22,329 WE ALSO WANT TO THANK THE STAFF 6271 04:32:22,329 --> 04:32:24,231 INVOLVED IN THE REPORT AS WELL 6272 04:32:24,231 --> 04:32:25,799 AS OFFICE OF LEGISLATION, PUBLIC 6273 04:32:25,799 --> 04:32:28,068 POLICY AND ETHICS. 6274 04:32:28,068 --> 04:32:30,971 NOW WE HAVE ONE MORE WORKING 6275 04:32:30,971 --> 04:32:32,973 GROUP THAT'S GOING TO REPORT ON 6276 04:32:32,973 --> 04:32:33,907 THEIR DELIBERATIONS. 6277 04:32:33,907 --> 04:32:39,045 NOW, REMEMBER THEY ARE A FEW 6278 04:32:39,045 --> 04:32:40,714 YEARS BEHIND PRGLAC. 6279 04:32:40,714 --> 04:32:44,050 SO THEY'RE IN A YOUNGER PHASE IN 6280 04:32:44,050 --> 04:32:46,720 TERMS OF THEIR WORK AND WE'RE 6281 04:32:46,720 --> 04:32:52,726 VERY HAPPY TO WELCOME BACK 6282 04:32:52,726 --> 04:32:56,329 DR. LUCKY JAIN AND DR. UMA REDDY 6283 04:32:56,329 --> 04:33:05,572 A FORMER NICHD STAFF MEMBER. 6284 04:33:05,572 --> 04:33:07,374 WE ESTABLISHED THE COUNCIL IN 6285 04:33:07,374 --> 04:33:09,776 LATE 2022 IN RESPONSE TO A 6286 04:33:09,776 --> 04:33:11,845 U.S. DEPARTMENT OF HEALTH AND 6287 04:33:11,845 --> 04:33:15,382 HUMAN SERVICES REQUEST TO LEAD A 6288 04:33:15,382 --> 04:33:15,982 CONGRESSIONALLY MANDATED TASK 6289 04:33:15,982 --> 04:33:19,119 FORCE TO SOMEONE THE SIGNIFICANT 6290 04:33:19,119 --> 04:33:20,187 PROBLEM OF STILLBIRTH IN THE 6291 04:33:20,187 --> 04:33:20,987 UNITED STATES. 6292 04:33:20,987 --> 04:33:22,756 THE WORKING GROUP PRESENTED 6293 04:33:22,756 --> 04:33:24,624 THEIR RECOMMENDATIONS TO YOU 6294 04:33:24,624 --> 04:33:27,093 BACK IN JANUARY OF 2023 AND NOW 6295 04:33:27,093 --> 04:33:30,263 WE'LL HEAR AN UPDATE FROM THOSE 6296 04:33:30,263 --> 04:33:33,500 CO-CHAIRS, DR. LUCKY JAIN AND 6297 04:33:33,500 --> 04:33:35,368 DR. UMA REDDY. 6298 04:33:35,368 --> 04:33:38,738 LUCKY JAIN IS A NEONATOLOGIST AS 6299 04:33:38,738 --> 04:33:40,540 CHIEF AND DEPARTMENT OF 6300 04:33:40,540 --> 04:33:42,509 PEDIATRICS CHAIR AT THE 6301 04:33:42,509 --> 04:33:43,577 CHILDREN'S HEALTH CARE OF 6302 04:33:43,577 --> 04:33:45,045 ATLANTA. 6303 04:33:45,045 --> 04:33:47,848 HE'S ALSO THE GEORGE W. BRUMLY 6304 04:33:47,848 --> 04:33:48,381 JR. PROFESSOR, CHAIR OF 6305 04:33:48,381 --> 04:33:50,617 DEPARTMENT OF PEDIATRICS ATHET 6306 04:33:50,617 --> 04:33:52,719 EMORY SCHOOL OF MEDICINE AND 6307 04:33:52,719 --> 04:33:58,725 EXECUTIVE DIRECTOR OF THE EMORY 6308 04:33:58,725 --> 04:34:00,327 CHILDREN'S PEDIATRIC INSTITUTE 6309 04:34:00,327 --> 04:34:02,529 AND SERVED AS A MEMBER OF THE 6310 04:34:02,529 --> 04:34:04,731 NICHD ADVISORY COUNCIL AND WE 6311 04:34:04,731 --> 04:34:05,498 MISS HIM. 6312 04:34:05,498 --> 04:34:15,108 DR. UMA REDDY IS AN OBSTETRICIAN 6313 04:34:15,108 --> 04:34:17,544 GYNECOLOGIST AND VICE CHAIR OF 6314 04:34:17,544 --> 04:34:20,447 RESEARCH AND PROFESSOR OF 6315 04:34:20,447 --> 04:34:23,383 OBSTETRICS AND GYNECOLOGY AT 6316 04:34:23,383 --> 04:34:24,184 COLUMBIA UNIVERSITY AND COLUMBIA 6317 04:34:24,184 --> 04:34:25,418 UNIVERSITY IRVING MEDICAL 6318 04:34:25,418 --> 04:34:25,652 CENTER. 6319 04:34:25,652 --> 04:34:30,790 SHE PREVIOUSLY SERVED AS A 6320 04:34:30,790 --> 04:34:32,225 MEDICAL OFFICER IN THE 6321 04:34:32,225 --> 04:34:33,260 PERINATOLOGY BRANCH AND MISS HER 6322 04:34:33,260 --> 04:34:34,895 AS WELL. 6323 04:34:34,895 --> 04:34:36,062 THEY'RE GOING TO PRESENT THE 6324 04:34:36,062 --> 04:34:39,499 STILLBIRTH UPDATE. 6325 04:34:39,499 --> 04:34:46,006 THANK YOU. 6326 04:34:46,006 --> 04:34:50,477 >> IT'S A REAL HONOR TO BE BACK 6327 04:34:50,477 --> 04:34:51,711 WITH THE NICHD COUNCIL. 6328 04:34:51,711 --> 04:35:02,155 I DO MISS YOU ALL AS WELL. 6329 04:35:05,225 --> 04:35:07,427 BEFORE I GET IN THE 6330 04:35:07,427 --> 04:35:09,429 RECOMMENDATIONS ON BEHALF OF 6331 04:35:09,429 --> 04:35:16,269 DR. REDDY AND MYSELF I WANT TO 6332 04:35:16,269 --> 04:35:21,541 THANK MS. WILLIAMS AND MS. LONGO 6333 04:35:21,541 --> 04:35:22,742 IN PREPARING THE PREVIOUS REPORT 6334 04:35:22,742 --> 04:35:25,245 AND THE CURRENT WORK WE HAVE 6335 04:35:25,245 --> 04:35:27,380 ACCOMPLISHED I FEEL IN A VERY 6336 04:35:27,380 --> 04:35:32,152 EFFICIENT MANNER. 6337 04:35:32,152 --> 04:35:35,255 DR. BIANCHI HAS ALREADY 6338 04:35:35,255 --> 04:35:41,861 MENTIONED BACK IN 2022, THE 6339 04:35:41,861 --> 04:35:45,432 CONGRESSIONAL MANDATE AHLLOWED S 6340 04:35:45,432 --> 04:35:47,367 TO ESTABLISH A TASK FORCE. 6341 04:35:47,367 --> 04:35:50,003 A MILLION DOLLARS WAS 6342 04:35:50,003 --> 04:35:51,304 CONTRIBUTED BY THE CONGRESSIONAL 6343 04:35:51,304 --> 04:35:53,907 COMMITTEE TO GET THAT WORKFORCE 6344 04:35:53,907 --> 04:35:54,140 STARTED. 6345 04:35:54,140 --> 04:35:57,610 . 6346 04:35:57,610 --> 04:36:03,316 THAT WORK FOCUSSED LARGELY ON 6347 04:36:03,316 --> 04:36:06,853 GETTING THE CDC AND NIH AND 6348 04:36:06,853 --> 04:36:08,688 OUTSIDE ORGANIZATIONS TO WORK 6349 04:36:08,688 --> 04:36:10,991 TOGETHER TO FOCUS ON FOUR 6350 04:36:10,991 --> 04:36:12,592 PRIMARY AREAS. 6351 04:36:12,592 --> 04:36:14,894 THE FIRST ONE WAS CURRENT 6352 04:36:14,894 --> 04:36:16,730 BARRIERS TO COLLECTING DATA ON 6353 04:36:16,730 --> 04:36:17,297 STILLBIRTHS THROUGHOUT THE 6354 04:36:17,297 --> 04:36:23,770 UNITED STATES. 6355 04:36:23,770 --> 04:36:31,378 SECOND WAS COMMUNITIES AT HIGH 6356 04:36:31,378 --> 04:36:35,382 RISK OF STILLBIRTHS AND LOOKING 6357 04:36:35,382 --> 04:36:37,717 AT TREATMENT OPPORTUNITIES FOR 6358 04:36:37,717 --> 04:36:41,588 MOTHERS FOLLOWING STILLBIRTH AND 6359 04:36:41,588 --> 04:36:43,390 FINALLY TO LOOK MORE CLOSELY AT 6360 04:36:43,390 --> 04:36:44,657 THE KNOWN RISK FACTORS FOR 6361 04:36:44,657 --> 04:36:49,262 STILLBIRTHS. 6362 04:36:49,262 --> 04:36:52,332 THE NEXT SLIDE SHOWS WHAT WE DID 6363 04:36:52,332 --> 04:36:55,668 IN OUR FIRST REPORT. 6364 04:36:55,668 --> 04:37:00,874 THE FIRST REPORT FOCUSSED 6365 04:37:00,874 --> 04:37:02,475 LARGELY ON THE AREAS AND THE 6366 04:37:02,475 --> 04:37:06,713 REPORT WAS ENTITLED WORKING TO 6367 04:37:06,713 --> 04:37:09,449 ADDRESS THE TRAGEDY OF 6368 04:37:09,449 --> 04:37:12,152 STILLBIRTHS BUT GIVEN 6369 04:37:12,152 --> 04:37:12,986 STILLBIRTHS STILL AFFECT A LARGE 6370 04:37:12,986 --> 04:37:15,388 NUMBER OF PREGNANCIES IN THE 6371 04:37:15,388 --> 04:37:18,892 UNITED STATES AND WHEN THAT 6372 04:37:18,892 --> 04:37:19,125 HAPPENS. 6373 04:37:19,125 --> 04:37:24,497 WE HEARD FROM PEOPLE WHO COME 6374 04:37:24,497 --> 04:37:26,766 THROUGH THIS HOW DEVASTATING THE 6375 04:37:26,766 --> 04:37:29,602 OCCURRENCE IS AND HOW FOR 6376 04:37:29,602 --> 04:37:31,004 DECADES LATER THEY CONTINUE TO 6377 04:37:31,004 --> 04:37:31,671 LIVE THROUGH THAT HORRIFYING 6378 04:37:31,671 --> 04:37:37,277 EXPERIENCE. 6379 04:37:37,277 --> 04:37:38,778 THE NEXT FEW SLIDES I'LL 6380 04:37:38,778 --> 04:37:41,081 SUMMARIZE FOR YOU WHAT WE 6381 04:37:41,081 --> 04:37:46,719 DISCOVERED IN THE FIRST YEAR OF 6382 04:37:46,719 --> 04:37:49,255 ENGAGEMENT WITH ALL OF THE 6383 04:37:49,255 --> 04:37:51,391 EXTERNAL AGENCIES AND NICHD AND 6384 04:37:51,391 --> 04:37:54,928 THE TASK FORCE. 6385 04:37:54,928 --> 04:37:59,365 THE FIRST RECOMMENDED TO THE 6386 04:37:59,365 --> 04:38:01,935 BARRIERS AROUND COLLECTING DATA 6387 04:38:01,935 --> 04:38:04,704 ON STILLBIRTH WAS THAT WE NEEDED 6388 04:38:04,704 --> 04:38:09,042 PROCEDURES TO IMPROVE THE 6389 04:38:09,042 --> 04:38:10,610 CONSISTENCY AND QUALITY OF DATA 6390 04:38:10,610 --> 04:38:10,910 COLLECTION. 6391 04:38:10,910 --> 04:38:14,114 WE NEEDED TO STANDARDIZE CASE 6392 04:38:14,114 --> 04:38:17,050 DEFINITIONS BUT WE NEEDED TO 6393 04:38:17,050 --> 04:38:22,222 TRAIN PEOPLE WHAT INVOLVED IN 6394 04:38:22,222 --> 04:38:29,062 DATA COLLECTION FOR THE DEATH 6395 04:38:29,062 --> 04:38:32,499 CERTIFICATE BECAUSE THE PROCESS 6396 04:38:32,499 --> 04:38:35,401 WAS HAPHAZARD AND NEEDED A WAY 6397 04:38:35,401 --> 04:38:39,739 TO UPDATE REPORTS AND OUTREACH 6398 04:38:39,739 --> 04:38:48,748 TO LOCALITIES TO LOOK AT 6399 04:38:48,748 --> 04:38:49,282 STILLBIRTH DATA REQUIRED 6400 04:38:49,282 --> 04:38:57,190 INCLUDING AN AUTOPSY. 6401 04:38:57,190 --> 04:38:59,192 FURTHER DEFINING THE 6402 04:38:59,192 --> 04:39:00,527 RECOMMENDATIONS WE FELT THE NEED 6403 04:39:00,527 --> 04:39:05,765 TO CONDUCT POPULATION-BASED 6404 04:39:05,765 --> 04:39:06,366 STILLBIRTH SURVEILLANCE AND 6405 04:39:06,366 --> 04:39:10,737 DIVERSE JURISDICTIONS WE NEEDED 6406 04:39:10,737 --> 04:39:13,573 TO EXPLORE COLLECTION SYSTEMS 6407 04:39:13,573 --> 04:39:15,074 THAT EXIST IN THE CDC SYSTEM. 6408 04:39:15,074 --> 04:39:18,578 THAT WE FURTHER NEEDED TO 6409 04:39:18,578 --> 04:39:20,914 CONDUCT VALIDATION STUDIES OF 6410 04:39:20,914 --> 04:39:23,850 CURRENT DATA SOURCES. 6411 04:39:23,850 --> 04:39:27,420 THEY TEND TO BE VERY STATE 6412 04:39:27,420 --> 04:39:28,655 CENTRIC AND VERY DESPERATE IN 6413 04:39:28,655 --> 04:39:34,761 THE WAY THEY ARE VALIDATED. 6414 04:39:34,761 --> 04:39:36,763 WE NEEDED TO LEVERAGE OTHER 6415 04:39:36,763 --> 04:39:37,964 SURVEILLANCE DATA FOR STILL 6416 04:39:37,964 --> 04:39:39,399 BIRTH RESEARCH AND FINALLY THERE 6417 04:39:39,399 --> 04:39:44,204 WAS URGENT NEED TO LINK THE MANY 6418 04:39:44,204 --> 04:39:46,739 SOURCES OF DATA THAT ULTIMATELY 6419 04:39:46,739 --> 04:39:47,640 ALLOW MEANINGFUL INFORMATION TO 6420 04:39:47,640 --> 04:39:51,277 BE GATHERED. 6421 04:39:51,277 --> 04:39:53,846 IN ADDITION WE FELT THERE WAS 6422 04:39:53,846 --> 04:39:57,317 TRAINING NEEDED TO IMPROVE VERY 6423 04:39:57,317 --> 04:40:01,187 LITTLE PATHOLOGY, GENETICS AND 6424 04:40:01,187 --> 04:40:03,289 OTHER AREAS TO ADVANCE THE 6425 04:40:03,289 --> 04:40:06,926 PRACTICE OF FETAL AUTOPSY GIVEN 6426 04:40:06,926 --> 04:40:10,430 FETAL AUTOPSY WAS BEING DONE IN 6427 04:40:10,430 --> 04:40:12,799 A RELATIVELY SMALL NUMBER OF 6428 04:40:12,799 --> 04:40:17,470 ROOM AUTOPSY OCCURRENCES. 6429 04:40:17,470 --> 04:40:22,442 NOW, IN THE NEXT MAIN AREA 6430 04:40:22,442 --> 04:40:26,279 IDENTIFYING COMMUNITIES OF 6431 04:40:26,279 --> 04:40:27,413 STILLBIRTH WE REALIZED THERE 6432 04:40:27,413 --> 04:40:29,983 WERE LARGE DISPARITIES IN 6433 04:40:29,983 --> 04:40:31,317 STILLBIRTH OCCURRENCE AND NEEDED 6434 04:40:31,317 --> 04:40:35,154 TO ADDRESS RACIAL, ETHNIC, SOCIO 6435 04:40:35,154 --> 04:40:39,425 ECONOMIC AND GEOGRAPHIC AND 6436 04:40:39,425 --> 04:40:40,660 OTHER DISPARITIES. 6437 04:40:40,660 --> 04:40:46,733 WE ALSO RECOGNIZE THE NIH SHOULD 6438 04:40:46,733 --> 04:40:54,240 REVIEW STUDIES TO MAKE SURE THAT 6439 04:40:54,240 --> 04:40:55,275 THERE IS PROPER REPRESENTATION 6440 04:40:55,275 --> 04:40:56,976 OF THE GROUPS BECAUSE WE NEVER 6441 04:40:56,976 --> 04:40:58,411 GET TO A CLEAR ANSWER IN A 6442 04:40:58,411 --> 04:41:01,481 PROSPECTIVE MANNER. 6443 04:41:01,481 --> 04:41:06,886 WE ALSO RECOGNIZE THE NIH NEEDED 6444 04:41:06,886 --> 04:41:12,292 TO EXPAND RESEARCH IN 6445 04:41:12,292 --> 04:41:15,261 COMMUNITY-BASED AREAS IN 6446 04:41:15,261 --> 04:41:16,462 STILLBIRTH BY AT RISK 6447 04:41:16,462 --> 04:41:19,399 POPULATIONS AND FINALLY BARRIERS 6448 04:41:19,399 --> 04:41:20,967 TO IMPROVE DATA ON STILLBIRTH 6449 04:41:20,967 --> 04:41:25,305 NEEDED TO BE REMOVED. 6450 04:41:25,305 --> 04:41:28,107 AND THAT INCLUDED REPRESENTATION 6451 04:41:28,107 --> 04:41:29,375 OF INDIVIDUALS WITH DIVERSE 6452 04:41:29,375 --> 04:41:31,377 ETHNIC AND RACIAL BACKGROUNDS 6453 04:41:31,377 --> 04:41:32,912 AND PARTICULARLY GROUPS THAT 6454 04:41:32,912 --> 04:41:38,851 EXPERIENCE THESE DISPARITIES. 6455 04:41:38,851 --> 04:41:41,654 HAVING PSYCHOLOGICAL IMPACT OF 6456 04:41:41,654 --> 04:41:43,389 STILLBIRTH WAS PARTICULARLY 6457 04:41:43,389 --> 04:41:44,357 CHALLENGING. 6458 04:41:44,357 --> 04:41:46,659 AS WE BEGIN SPEAKING WITH 6459 04:41:46,659 --> 04:41:49,128 MOTHERS WHO HAVE GONE THROUGH 6460 04:41:49,128 --> 04:41:52,765 THIS EXPERIENCE, WE REALIZED HOW 6461 04:41:52,765 --> 04:41:55,835 TRAUMATIZED THEY WERE AND HOW 6462 04:41:55,835 --> 04:41:57,937 LITTLE THEY FELT ROOM IN TERMS 6463 04:41:57,937 --> 04:42:02,442 OF SUPPORT AS THEY WERE MOVING 6464 04:42:02,442 --> 04:42:03,710 THROUGH THE EXPERIENCE. 6465 04:42:03,710 --> 04:42:08,381 MY RECOMMENDATION WAS THE NIH, 6466 04:42:08,381 --> 04:42:10,583 CDC, HHS SHOULD ALL PARTICIPATE 6467 04:42:10,583 --> 04:42:11,784 IN CONDUCTING SYSTEMATIC 6468 04:42:11,784 --> 04:42:13,019 RESEARCH TO COLLECT DATA FROM 6469 04:42:13,019 --> 04:42:15,388 INDIVIDUALS WHO HAVE LIVED 6470 04:42:15,388 --> 04:42:20,560 THROUGH THIS EXPERIENCE. 6471 04:42:20,560 --> 04:42:24,397 AND GET TO PSYCHOLOGICAL IMPACT 6472 04:42:24,397 --> 04:42:26,099 OF STILL BIRTHS. 6473 04:42:26,099 --> 04:42:27,400 WE ALSO THINK IMPLEMENTATION 6474 04:42:27,400 --> 04:42:30,737 RESEARCH SHOULD BE DESIGN TO 6475 04:42:30,737 --> 04:42:32,805 INFORM EFFORTS ON HOW TO DEVELOP 6476 04:42:32,805 --> 04:42:35,742 CULTURALLY SENSITIVE PROGRAMS TO 6477 04:42:35,742 --> 04:42:39,245 SUPPORT THESE FAMILIES AFTER 6478 04:42:39,245 --> 04:42:39,545 STILLBIRTH. 6479 04:42:39,545 --> 04:42:42,448 RESULTS FROM THESE ULTIMATELY 6480 04:42:42,448 --> 04:42:44,317 WOULD HELP IMPROVE AND PROVIDE 6481 04:42:44,317 --> 04:42:46,619 TRAINING AND HELP INCORPORATE 6482 04:42:46,619 --> 04:42:48,321 SUPPORTIVE PRACTICES INTO CARE 6483 04:42:48,321 --> 04:42:58,564 OF EFFECTED FAMILIES. 6484 04:42:58,564 --> 04:42:59,999 MUCH IS KNOWN IN RISK FACTORS 6485 04:42:59,999 --> 04:43:03,369 FOR STILL BIRTHS. 6486 04:43:03,369 --> 04:43:04,871 WE FELT MORE BASIC 6487 04:43:04,871 --> 04:43:07,774 TRANSLATIONAL, CLINICAL AND 6488 04:43:07,774 --> 04:43:11,244 PUBLIC HEALTH RESEARCH 6489 04:43:11,244 --> 04:43:13,613 ENGAGEMENT WAS NEEDED TO DEVELOP 6490 04:43:13,613 --> 04:43:16,749 A RESEARCH AGENDA WHICH 6491 04:43:16,749 --> 04:43:18,985 ULTIMATELY COULD ADVANCE 6492 04:43:18,985 --> 04:43:21,287 PREVENTION OF STILL BIRTHS. 6493 04:43:21,287 --> 04:43:23,389 THE RESEARCH AGENDA WOULD 6494 04:43:23,389 --> 04:43:27,026 INCLUDE EFFORTS TO IDENTIFY TRUE 6495 04:43:27,026 --> 04:43:30,129 IMPLICATIONS OF STILLBIRTH 6496 04:43:30,129 --> 04:43:33,199 PREVENTION FROM THE NIH HUMAN 6497 04:43:33,199 --> 04:43:34,333 PLACENTA PROJECT AND RELATED 6498 04:43:34,333 --> 04:43:34,934 RESEARCH THAT'S ALREADY BEEN 6499 04:43:34,934 --> 04:43:39,105 DONE. 6500 04:43:39,105 --> 04:43:41,874 FURTHER, WE FELT WE NEEDED TO 6501 04:43:41,874 --> 04:43:45,978 ESTABLISH BASELINE DATA ON THE 6502 04:43:45,978 --> 04:43:48,114 PHYSIOLOGY OF PREGNANCY 6503 04:43:48,114 --> 04:43:48,681 INCLUDING IN PARTICULAR 6504 04:43:48,681 --> 04:43:52,051 POTENTIAL INDICATORS OF HEALTH 6505 04:43:52,051 --> 04:43:53,085 AND DISEASE AND MAY INCLUDE AND 6506 04:43:53,085 --> 04:43:55,855 NOT LIMITED TO THE CENTER 6507 04:43:55,855 --> 04:43:58,524 DEVELOPMENT AND FUNCTION FETAL 6508 04:43:58,524 --> 04:43:59,125 MOVEMENT, FETAL GROWTH, 6509 04:43:59,125 --> 04:44:03,062 ETCETERA. 6510 04:44:03,062 --> 04:44:05,765 AND FINALLY WHEN WE LOOKED AT 6511 04:44:05,765 --> 04:44:09,735 RESEARCH RISK FACTORS WE 6512 04:44:09,735 --> 04:44:15,041 REALIZED THAT THE FOCUS ON UNDER 6513 04:44:15,041 --> 04:44:15,575 INVESTIGATED AREAS MIGHT 6514 04:44:15,575 --> 04:44:16,476 DISCOVER NEW RISK FACTORS WE'RE 6515 04:44:16,476 --> 04:44:21,180 NOT AWARE OF RIGHT NOW. 6516 04:44:21,180 --> 04:44:22,882 PARTICULARLY IN THE AREA OF 6517 04:44:22,882 --> 04:44:27,386 HEALTH DISPARITIES AND 6518 04:44:27,386 --> 04:44:28,888 STILLBIRTH. 6519 04:44:28,888 --> 04:44:32,525 ULTIMATELY STILLBIRTH HAVING A 6520 04:44:32,525 --> 04:44:33,593 REGISTRY WITH GOOD AUTOPSY DATA 6521 04:44:33,593 --> 04:44:35,595 WOULD BE HELPFUL IN THAT REGARD 6522 04:44:35,595 --> 04:44:39,365 AND ULTIMATELY WE WOULD THEN BE 6523 04:44:39,365 --> 04:44:41,501 ABLE TO DEVELOP AND TEST 6524 04:44:41,501 --> 04:44:43,569 INDICATORS AND CLINICAL 6525 04:44:43,569 --> 04:44:46,072 INTERVENTIONS FOR STILLBIRTH 6526 04:44:46,072 --> 04:44:46,572 PREVENTION. 6527 04:44:46,572 --> 04:44:49,375 SO A SUMMARY OF THESE 6528 04:44:49,375 --> 04:44:52,111 RECOMMENDATIONS ESSENTIALLY IS 6529 04:44:52,111 --> 04:44:54,647 PROVIDED IN THIS SLIDE WHICH IS 6530 04:44:54,647 --> 04:44:58,484 TO IMPROVE THE QUALITY OF VITAL 6531 04:44:58,484 --> 04:45:00,419 STATISTICS AND SURVEILLANCE AND 6532 04:45:00,419 --> 04:45:03,289 EPIDEMIOLOGIC INFORMATION AT ALL 6533 04:45:03,289 --> 04:45:04,757 LEVELS, LOCAL, STATE AND 6534 04:45:04,757 --> 04:45:07,894 NATIONAL LEVELS. 6535 04:45:07,894 --> 04:45:12,932 WE NEED TO USE INSIGHT FROM 6536 04:45:12,932 --> 04:45:15,134 IMPROVED EPIDEMIOLOGIC DATA TO 6537 04:45:15,134 --> 04:45:16,769 CONDUCT ADDITIONAL RESEARCH TO 6538 04:45:16,769 --> 04:45:19,338 HELP EXPLAIN AND ADDRESS 6539 04:45:19,338 --> 04:45:20,973 DISPARITIES INTO STILLBIRTH. 6540 04:45:20,973 --> 04:45:23,142 WE NEED TO CONDUCT 6541 04:45:23,142 --> 04:45:24,844 IMPLEMENTATION RESEARCH AND 6542 04:45:24,844 --> 04:45:27,346 DEVELOP CULTURALLY SENSITIVE 6543 04:45:27,346 --> 04:45:29,515 INTERVENTIONS TO SUPPORT 6544 04:45:29,515 --> 04:45:30,816 FAMILIES WHO EXPERIENCE 6545 04:45:30,816 --> 04:45:34,587 STILLBIRTH AND FINALLY CREATE 6546 04:45:34,587 --> 04:45:39,358 AND SUPPORT A ROBUST RESEARCH 6547 04:45:39,358 --> 04:45:41,327 AGENDA FOR KNOWN AND UNKNOWN 6548 04:45:41,327 --> 04:45:43,496 RISK FACTORS IN THE PHYSIOLOGIC 6549 04:45:43,496 --> 04:45:45,197 MECHANISMS THAT ULTIMATELY LEAD 6550 04:45:45,197 --> 04:45:47,600 TO STILL BIRTH AND THAT 6551 04:45:47,600 --> 04:45:49,435 ULTIMATELY WE WOULD TRY TO 6552 04:45:49,435 --> 04:45:54,273 MODIFY TO PREVENT STILLBIRTHS. 6553 04:45:54,273 --> 04:45:59,812 FAST FORWARD TO 2023 DR. BIANCHI 6554 04:45:59,812 --> 04:46:01,714 MENTIONED THE CONGRESSIONAL TASK 6555 04:46:01,714 --> 04:46:03,382 FORCE HOPEFULLY LIKES OUR WORK 6556 04:46:03,382 --> 04:46:07,320 AND THE REPORT AND CAME BACK 6557 04:46:07,320 --> 04:46:11,557 WITH ANOTHER ALLOCATION FROM THE 6558 04:46:11,557 --> 04:46:13,092 COMMITTEE FROM THE CONGRESSIONAL 6559 04:46:13,092 --> 04:46:14,193 COMMITTEE TO THE SECRETARY TO 6560 04:46:14,193 --> 04:46:16,028 GIVE US ONE MORE YEAR OF WORK. 6561 04:46:16,028 --> 04:46:21,701 I THOUGHT WE WERE DONE BY THEN 6562 04:46:21,701 --> 04:46:26,005 BUT THIS EXTENDED THE WORK OF 6563 04:46:26,005 --> 04:46:30,176 THE TASK FORCE BY ANOTHER YEAR 6564 04:46:30,176 --> 04:46:31,377 ESSENTIALLY. 6565 04:46:31,377 --> 04:46:37,216 WE FOCUSSED ON SEVERAL OF THE 6566 04:46:37,216 --> 04:46:44,590 AREAS WE ALREADY IDENTIFIED THE 6567 04:46:44,590 --> 04:46:50,029 PEOPLE WHO PARTICIPATED IN THE 6568 04:46:50,029 --> 04:46:59,538 EARLY PHASE AND THE SECOND AND 6569 04:46:59,538 --> 04:47:01,574 THE CONGRESSIONALLY MANDATED 6570 04:47:01,574 --> 04:47:03,376 PERFORMANCE ASSEMBLED THROUGH 6571 04:47:03,376 --> 04:47:06,679 THE NICHD AND THE MEMBERS ARE 6572 04:47:06,679 --> 04:47:07,713 OVER HERE. 6573 04:47:07,713 --> 04:47:11,751 YOU CAN BROWSE THROUGH IT LATER 6574 04:47:11,751 --> 04:47:14,353 AT YOUR CONVENIENCE, SEVERAL 6575 04:47:14,353 --> 04:47:15,388 COUNCIL MEMBERS ARE ALSO 6576 04:47:15,388 --> 04:47:25,731 INCLUDED OVER HERE. 6577 04:47:41,313 --> 04:47:43,816 AND THE GROUP FOCUSSED ON 6578 04:47:43,816 --> 04:47:44,383 STILLBIRTH PREVENTION AND 6579 04:47:44,383 --> 04:47:46,552 STRATEGIES AND THIS WAS LED BY 6580 04:47:46,552 --> 04:47:51,023 DR. BOB SILVER AND DR. ALISON 6581 04:47:51,023 --> 04:47:55,194 CAHILL AND THE THIRD GROUP 6582 04:47:55,194 --> 04:47:56,595 FOCUSSED ON ENHANCING RESOURCES 6583 04:47:56,595 --> 04:47:58,597 FOR FAMILIES IMPACTED BY 6584 04:47:58,597 --> 04:48:03,369 STILLBIRTH AND THIS GROUP WAS 6585 04:48:03,369 --> 04:48:07,406 CO-LED BY DR. JILL WEBBER AND 6586 04:48:07,406 --> 04:48:11,377 DR. KAREN GIBBONS. 6587 04:48:11,377 --> 04:48:14,013 THE GENERAL RECOMMENDATIONS FROM 6588 04:48:14,013 --> 04:48:15,848 THE GROUPS ARE LISTED IN THE 6589 04:48:15,848 --> 04:48:16,982 NEXT COUPLE SLIDES. 6590 04:48:16,982 --> 04:48:18,751 I WON'T GO THROUGH THE DEPTH OF 6591 04:48:18,751 --> 04:48:20,953 THE SLIDES BECAUSE THAT'S WHERE 6592 04:48:20,953 --> 04:48:24,023 DR. UMA REDDY IS GOING TO COVER 6593 04:48:24,023 --> 04:48:27,727 BUT TO SHOW YOU -- GIVE YOU THE 6594 04:48:27,727 --> 04:48:29,428 OVER ALL ESSENCE OF WHERE WE'RE 6595 04:48:29,428 --> 04:48:34,600 HEADING WITH THIS THE COMPELLING 6596 04:48:34,600 --> 04:48:36,102 NEED TO STANDARDIZE DATA 6597 04:48:36,102 --> 04:48:38,504 REPORTING AND COLLECTION TO 6598 04:48:38,504 --> 04:48:39,872 PROMOTE MORE ACCURATE AND 6599 04:48:39,872 --> 04:48:41,340 CONSISTENT SURVEILLANCE OF STILL 6600 04:48:41,340 --> 04:48:44,376 BIRTHS THAT THERE IS NEED FOR 6601 04:48:44,376 --> 04:48:46,779 SUPPORT FOR POPULATION-BASED 6602 04:48:46,779 --> 04:48:52,785 SERVICE SUCH AS EXPANDING THE 6603 04:48:52,785 --> 04:49:03,362 CDC PRAMS NETWORK AND THE SOARS 6604 04:49:03,362 --> 04:49:05,498 SURVEY TO CAPTURE THOSE 6605 04:49:05,498 --> 04:49:06,132 EXPERIENCING THE HIGHEST 6606 04:49:06,132 --> 04:49:07,333 STILLBIRTH BURDEN. 6607 04:49:07,333 --> 04:49:14,740 WE NEED TO EXPLORE THE ROLE OF 6608 04:49:14,740 --> 04:49:15,341 ARTIFICIAL INTELLIGENCE AND 6609 04:49:15,341 --> 04:49:17,042 MACHINE LEARNING AND IMPROVING 6610 04:49:17,042 --> 04:49:21,947 MEDICINE IN CARE DELIVERY AND 6611 04:49:21,947 --> 04:49:24,850 IMPROVING RISK PREDICTION AND 6612 04:49:24,850 --> 04:49:25,651 SINCE THEY HELD INFORMATION CAN 6613 04:49:25,651 --> 04:49:36,162 BE SAFEGUARDED IN THE PROCESS. 6614 04:49:37,129 --> 04:49:38,397 WE NEED TO EDUCATION RISK 6615 04:49:38,397 --> 04:49:40,132 FACTORS OR OTHER INTERVENTIONS 6616 04:49:40,132 --> 04:49:45,604 THAT NEED TO BE LOOKED INTO 6617 04:49:45,604 --> 04:49:49,809 CAREFULLY. 6618 04:49:49,809 --> 04:49:52,278 CREATE STANDARDIZED TRAINING 6619 04:49:52,278 --> 04:49:54,580 WITH RESOURCES AND COMPLETE 6620 04:49:54,580 --> 04:49:56,882 STILL BIRTH WORK UP TO BE 6621 04:49:56,882 --> 04:49:57,650 ACCOMPLISHED. 6622 04:49:57,650 --> 04:50:02,388 WE WANTED TO MOVE AWAY FROM F 6623 04:50:02,388 --> 04:50:05,691 FRAGMENTATION OF HOW THIS IS 6624 04:50:05,691 --> 04:50:10,129 DONE AND HAVE PLACENTAL 6625 04:50:10,129 --> 04:50:11,630 PATHOLOGY EVEN IF DONE IN 6626 04:50:11,630 --> 04:50:15,367 SMALLER COHORTS AND TO PROVIDE 6627 04:50:15,367 --> 04:50:16,769 MORE WHOLESOME INFORMATION TO 6628 04:50:16,769 --> 04:50:18,704 GUIDE INTERVENTION STRATEGIES. 6629 04:50:18,704 --> 04:50:20,472 WE NEED TO CREATE INFRASTRUCTURE 6630 04:50:20,472 --> 04:50:24,777 FOR PERINATAL AUDITS TO ENABLE 6631 04:50:24,777 --> 04:50:26,512 ANALYSIS AND DISCUSSION OF 6632 04:50:26,512 --> 04:50:27,479 STILLBIRTHS AND FURTHER 6633 04:50:27,479 --> 04:50:38,023 IDENTIFICATION OF RISK FACTORS. 6634 04:50:43,429 --> 04:50:46,465 HOW INTERPERSONAL RACISM 6635 04:50:46,465 --> 04:50:48,000 CONTRIBUTE TO THE HORRIBLE INEYE 6636 04:50:48,000 --> 04:50:56,976 QUALITIES IN STILLBIRTH RATES. 6637 04:50:56,976 --> 04:50:57,142 AND. 6638 04:50:57,142 --> 04:51:01,413 IMPROVE ACCESS TO HEALTH CARE 6639 04:51:01,413 --> 04:51:02,248 OPPORTUNITIES, IMPROVE QUALITY 6640 04:51:02,248 --> 04:51:03,382 OF CARE AFTER STILLBIRTH WHEN IT 6641 04:51:03,382 --> 04:51:07,386 IS NOT PREVENTIBLE AND IMPROVE 6642 04:51:07,386 --> 04:51:15,661 BEREAVEMENT CARE AS WELL. 6643 04:51:15,661 --> 04:51:17,596 AND THERE'S BEEN A LOT THAT 6644 04:51:17,596 --> 04:51:19,198 WE'VE ACCOMPLISH AND DISCUSS 6645 04:51:19,198 --> 04:51:21,000 DETAILS OF THE RECOMMENDATIONS. 6646 04:51:21,000 --> 04:51:23,969 I JUST WANTED TO ONE MORE TIME 6647 04:51:23,969 --> 04:51:34,313 THANK DR. BIAGE -- 6648 04:51:34,847 --> 04:51:35,381 DRDR. BIANCHI 6649 04:51:35,381 --> 04:51:36,382 AND THEIR SUPPORT. 6650 04:51:36,382 --> 04:51:38,217 >> FIRST TO THE PREVENTION AND 6651 04:51:38,217 --> 04:51:46,759 STRATEGIES SUB GROUP. 6652 04:51:46,759 --> 04:51:50,562 AND LACK OF AUTOPSY PLEASED TO 6653 04:51:50,562 --> 04:51:53,565 HISTOLOGY INFORMATION TO IMPROVE 6654 04:51:53,565 --> 04:51:54,667 CAUSES OF STILLBIRTH AROUND 6655 04:51:54,667 --> 04:51:56,735 POTENTIAL AVENUES OF PREVENTION. 6656 04:51:56,735 --> 04:51:58,771 GENETIC TESTING IS OFTEN NOT 6657 04:51:58,771 --> 04:52:02,341 DONE OF THE COST AND LOGISTICAL 6658 04:52:02,341 --> 04:52:03,676 CHALLENGES AND THE PROCESS OF 6659 04:52:03,676 --> 04:52:05,077 CAPTURING INFORMATION ON THE 6660 04:52:05,077 --> 04:52:06,178 CAUSES OF STILLBIRTH AND 6661 04:52:06,178 --> 04:52:09,448 ANALYZING THE QUALITY OF CARE 6662 04:52:09,448 --> 04:52:11,550 RESOURCED IN AN ANTIDISCIPLINARY 6663 04:52:11,550 --> 04:52:13,452 ACTION TO GUIDE ACTION TO 6664 04:52:13,452 --> 04:52:14,820 PREVENT DEATHS IN THE FUTURE IS 6665 04:52:14,820 --> 04:52:17,923 NOT ROUTINELY PERFORMED. 6666 04:52:17,923 --> 04:52:20,926 SO RECOMMENDATIONS FROM THE 6667 04:52:20,926 --> 04:52:21,126 GROUP. 6668 04:52:21,126 --> 04:52:23,228 CONSIDER RESEARCH ON TIMING OF 6669 04:52:23,228 --> 04:52:25,397 DELIVERY TO DEVELOP PERSONALIZED 6670 04:52:25,397 --> 04:52:27,032 RECOMMENDATIONS ON THE OPTIMAL 6671 04:52:27,032 --> 04:52:29,535 TIME BASED ON RISK FACTORS. 6672 04:52:29,535 --> 04:52:32,604 CURRENTLY INDUCTION OF DELIVERY 6673 04:52:32,604 --> 04:52:34,773 MAY BE DELIVERED AT 39 WEEKS PER 6674 04:52:34,773 --> 04:52:38,477 STUDY RESULTS WHICH SHOWED LOW 6675 04:52:38,477 --> 04:52:43,215 RISK PATIENTS INDUCTION AT 39 6676 04:52:43,215 --> 04:52:46,318 WEEKS OF GESTATION WITH LOWER 6677 04:52:46,318 --> 04:52:47,353 RATES OF HYPERTENSIVE DISORDERS 6678 04:52:47,353 --> 04:52:53,425 AND PREGNANCY AND NO MATERNAL OR 6679 04:52:53,425 --> 04:52:54,760 NEONATAL HARMS BEYOND GOING 6680 04:52:54,760 --> 04:52:58,063 THOSE WEEKS AND WITH THE SOCIAL 6681 04:52:58,063 --> 04:53:00,899 DETERMINATES OF HEALTH AND 6682 04:53:00,899 --> 04:53:02,134 POPULATION-BASED STILLBIRTH 6683 04:53:02,134 --> 04:53:03,769 SURVEILLANCE AND JURISDICTIONS 6684 04:53:03,769 --> 04:53:06,271 WITH HIGH BIRTH RATES AND 6685 04:53:06,271 --> 04:53:08,140 PROVIDING ACCESS TO PRENATAL 6686 04:53:08,140 --> 04:53:11,110 CARE AND POSTPARTUM CARE. 6687 04:53:11,110 --> 04:53:16,281 RESEARCH IS NEEDED TO DEVELOP 6688 04:53:16,281 --> 04:53:18,250 STILLBIRTH PREVENTION BUNDLES 6689 04:53:18,250 --> 04:53:20,119 WITH PUBLIC HEALTH MEASURES SUCH 6690 04:53:20,119 --> 04:53:23,355 AS ADVICE TO CEASE TOBACCO USE, 6691 04:53:23,355 --> 04:53:29,428 HELPING PEOPLE ACHIEVE A BETTER 6692 04:53:29,428 --> 04:53:31,997 BODY MASS INDEX AND MANAGE 6693 04:53:31,997 --> 04:53:34,767 DIABETES AND OBESITY AND OTHERS 6694 04:53:34,767 --> 04:53:37,369 AND LOOKING AT MEDICAL REPORTS 6695 04:53:37,369 --> 04:53:39,371 CONSIDER A STILLBIRTH REGISTRY 6696 04:53:39,371 --> 04:53:42,207 AND COLLECTING BIO SPECIMENS AND 6697 04:53:42,207 --> 04:53:44,676 LOW-DOSE ASPIRIN ACCORDING TO 6698 04:53:44,676 --> 04:53:46,779 THE PREVENTIVE TASK FORCE 6699 04:53:46,779 --> 04:53:47,179 GUIDELINES. 6700 04:53:47,179 --> 04:53:55,254 NEXT WE'LL TURN TO THE IMPROVING 6701 04:53:55,254 --> 04:53:57,289 DATA COLLECTION SUB GROUP SLIDE 6702 04:53:57,289 --> 04:53:59,358 AND THEIR FINDINGS. 6703 04:53:59,358 --> 04:54:03,128 SURVEILLANCE AND DEFINITIONS AND 6704 04:54:03,128 --> 04:54:06,865 GESTATIONAL AGE VARY BY STATE. 6705 04:54:06,865 --> 04:54:08,700 THEY'RE NOT CURRENTLY 6706 04:54:08,700 --> 04:54:09,034 STANDARDIZED. 6707 04:54:09,034 --> 04:54:10,769 THEREFORE DATA COLLECTION IS 6708 04:54:10,769 --> 04:54:11,637 INCONSISTENT. 6709 04:54:11,637 --> 04:54:13,305 CLINICAL DATA COLLECTED FROM 6710 04:54:13,305 --> 04:54:17,176 MULTIPLE SOURCES, ELECTRONIC 6711 04:54:17,176 --> 04:54:18,644 ELECTRONIC HEALTH RECORDS, 6712 04:54:18,644 --> 04:54:20,913 STUDIES, GENETIC TESTING AND 6713 04:54:20,913 --> 04:54:22,347 PREGNANCY EXPERIENCE AND PATIENT 6714 04:54:22,347 --> 04:54:25,284 HISTORY ARE NOT INTEGRATED OR 6715 04:54:25,284 --> 04:54:26,585 LINKED SO ALL INFORMATION FOR 6716 04:54:26,585 --> 04:54:27,619 RESEARCH AND STILLBIRTH 6717 04:54:27,619 --> 04:54:28,754 PREVENTION. 6718 04:54:28,754 --> 04:54:31,256 THERE'S A LACK OF UNIFORM 6719 04:54:31,256 --> 04:54:34,193 TRAINING OF INDIVIDUALS 6720 04:54:34,193 --> 04:54:36,428 COMPLETING FETAL DEATH S 6721 04:54:36,428 --> 04:54:40,732 CERTIFICATES AND THEY'RE 6722 04:54:40,732 --> 04:54:41,467 CURRENTLY REQUIRED DAYS BEFORE 6723 04:54:41,467 --> 04:54:44,603 THE RESULTS OF THE WORKUP ARE 6724 04:54:44,603 --> 04:54:45,070 AVAILABLE. 6725 04:54:45,070 --> 04:54:45,871 THEY'RE IMPORTANT BECAUSE THEY 6726 04:54:45,871 --> 04:54:48,607 MAY BETTER IDENTIFY THE CAUSE OF 6727 04:54:48,607 --> 04:54:49,007 DEATH. 6728 04:54:49,007 --> 04:54:50,509 FULL WORKUP DEATH RESULTS ARE 6729 04:54:50,509 --> 04:54:53,679 OFTEN NOT INCORPORATED INTO THE 6730 04:54:53,679 --> 04:54:57,616 DEATH CERTIFICATE AND A LEGAL 6731 04:54:57,616 --> 04:55:01,120 ELEMENT IS NEEDED AND SUBSEQUENT 6732 04:55:01,120 --> 04:55:02,855 TESTING MAY NOT BE INTEGRATED 6733 04:55:02,855 --> 04:55:03,489 INCLUDING NOT IN THE FINAL CAUSE 6734 04:55:03,489 --> 04:55:09,328 OF DEATH. 6735 04:55:09,328 --> 04:55:09,862 RECOMMENDATIONS INCLUDE 6736 04:55:09,862 --> 04:55:13,065 COLLECTING, TRANSFORMING AND 6737 04:55:13,065 --> 04:55:16,502 INTEGRATING AN MAINTAINING 6738 04:55:16,502 --> 04:55:20,372 HEALTH RECORDS IN FUTURE USE FOR 6739 04:55:20,372 --> 04:55:20,973 ARTIFICIAL INTELLIGENCE AND 6740 04:55:20,973 --> 04:55:22,774 MACHINE LEARNING TO CREATE A 6741 04:55:22,774 --> 04:55:25,077 MATERNAL HEALTH DATA ECO SYSTEM 6742 04:55:25,077 --> 04:55:28,780 SERVING AS A MAJOR RESOURCE ON 6743 04:55:28,780 --> 04:55:31,183 STILLBIRTH AND OTHER ADVERSE 6744 04:55:31,183 --> 04:55:33,152 PREGNANCY OUTCOMES AND DATA 6745 04:55:33,152 --> 04:55:36,121 DELIVERY AND WORKUP COMPLETION 6746 04:55:36,121 --> 04:55:39,358 SPECIFICALLY FOCUSSING ON DATA 6747 04:55:39,358 --> 04:55:40,826 STANDARDIZATION AND QUALITY 6748 04:55:40,826 --> 04:55:42,227 IMPROVEMENT ON REPORTING AND 6749 04:55:42,227 --> 04:55:45,430 CASE CONTROL STUDY BY LEVERAGING 6750 04:55:45,430 --> 04:55:46,365 ARTIFICIAL INTELLIGENCE TO 6751 04:55:46,365 --> 04:55:47,666 COLLECT DATA FOR COLLECTION 6752 04:55:47,666 --> 04:55:49,968 MEASURES AND MATERNAL EXPERIENCE 6753 04:55:49,968 --> 04:55:55,274 EVALUATION AND ASCERTAINMENT 6754 04:55:55,274 --> 04:55:56,241 SURVEILLANCE AND HEDGE 6755 04:55:56,241 --> 04:55:57,843 STILLBIRTH EVALUATION TO 6756 04:55:57,843 --> 04:55:59,378 TELEHEALTH AND CENTERS OF 6757 04:55:59,378 --> 04:56:03,382 EXCELLENCE AND FETAL AND INFANT 6758 04:56:03,382 --> 04:56:03,782 MORTALITY REVIEW. 6759 04:56:03,782 --> 04:56:05,984 IMPROVE AND DEVELOP QUALITY 6760 04:56:05,984 --> 04:56:07,953 INDICATORS FOR EVALUATION, 6761 04:56:07,953 --> 04:56:09,655 COUNSELING AND BEREAVEMENT AND 6762 04:56:09,655 --> 04:56:11,523 FOLLOW-UP AND CONDUCT AUDITS TO 6763 04:56:11,523 --> 04:56:15,661 IMPROVE THE QUALITY OF DATA 6764 04:56:15,661 --> 04:56:18,096 COLLECTION. 6765 04:56:18,096 --> 04:56:19,565 FOR THE RECOMMENDATIONS ON 6766 04:56:19,565 --> 04:56:22,501 EDUCATION WERE THE FOLLOWING 6767 04:56:22,501 --> 04:56:27,372 YOU, STATE FIELD REPRESENTATIVES 6768 04:56:27,372 --> 04:56:33,278 SHOULD PROVIDE DATA AND DEVELOP 6769 04:56:33,278 --> 04:56:35,047 TOOLS DEVELOPED AND PERSONNEL 6770 04:56:35,047 --> 04:56:38,984 EDUCATED ON USING A CHART 6771 04:56:38,984 --> 04:56:40,786 DEVELOPED TO FILL OUT THE FETAL 6772 04:56:40,786 --> 04:56:44,623 DEATH CERTIFICATE AND PERSONNEL 6773 04:56:44,623 --> 04:56:46,558 TO YOUED RECEIVE TRAINING FOR 6774 04:56:46,558 --> 04:56:47,893 ACCURACY AND COMPLETENESS SO 6775 04:56:47,893 --> 04:56:53,065 RESULTS ARE ADDED AS NEEDED. 6776 04:56:53,065 --> 04:56:55,167 LAST, ENHANCING RESOURCES FOR 6777 04:56:55,167 --> 04:56:58,904 FAMILIES IMPACTED BY STILLBIRTH 6778 04:56:58,904 --> 04:57:00,906 AND THEIR FINDINGS. 6779 04:57:00,906 --> 04:57:02,274 THERE'S NOT ALWAYS APPROPRIATE 6780 04:57:02,274 --> 04:57:04,576 CARE AT THE TIME OF BEREAVEMENT 6781 04:57:04,576 --> 04:57:07,346 VITAL TO MEET THE NEEDS OF 6782 04:57:07,346 --> 04:57:08,714 FAMILIES. 6783 04:57:08,714 --> 04:57:09,514 HEALTH CARE PROFESSIONALS AMONG 6784 04:57:09,514 --> 04:57:10,449 OTHER THINGS LIKE CULTURAL 6785 04:57:10,449 --> 04:57:15,387 SENSITIVITY AND HOW TO SPEAK 6786 04:57:15,387 --> 04:57:19,091 WITH BEREAVED PARENTS AND 6787 04:57:19,091 --> 04:57:20,859 THERE'S INADEQUATE RESOURCES FOR 6788 04:57:20,859 --> 04:57:22,594 THOSE WHO EXPERIENCE STILLBIRTH 6789 04:57:22,594 --> 04:57:23,228 ESPECIALLY SMALLER HOSPITALS 6790 04:57:23,228 --> 04:57:26,798 WITH LIMITED RESOURCES AND 6791 04:57:26,798 --> 04:57:28,700 PROFESSIONALS ARE INADEQUATELY 6792 04:57:28,700 --> 04:57:30,535 TRAINED REGARDING STILLBIRTH. 6793 04:57:30,535 --> 04:57:34,806 AT THE TIME OF DIAGNOSIS 6794 04:57:34,806 --> 04:57:36,541 CAREGIVERS SHOULD DISPLAY 6795 04:57:36,541 --> 04:57:38,577 EMPATHY AND REFER TO THE 6796 04:57:38,577 --> 04:57:41,246 STILLBIRTH INFANT AS A BABY AND 6797 04:57:41,246 --> 04:57:44,249 USE THE NAME IF ONE HAS BEEN 6798 04:57:44,249 --> 04:57:45,484 GIVEN. 6799 04:57:45,484 --> 04:57:47,719 PROVIDE A ROAD MAP OF THE 6800 04:57:47,719 --> 04:57:48,387 HOSPITALIZATION INCLUDING ITEMS 6801 04:57:48,387 --> 04:57:50,255 THEY MIGHT NEED OR WANT IN THE 6802 04:57:50,255 --> 04:57:51,223 HOSPITAL AND WHAT TO EXPECT 6803 04:57:51,223 --> 04:57:52,858 AROUND THE DELIVERY AND WHAT THE 6804 04:57:52,858 --> 04:57:55,360 BABY MIGHT LOOK LIKE AT BIRTH, 6805 04:57:55,360 --> 04:58:00,799 OPTIONS FOR PAIN MANAGEMENT, 6806 04:58:00,799 --> 04:58:04,569 INFORMATION ON A CODDLE COT AND 6807 04:58:04,569 --> 04:58:07,839 OPTIONS FOR MEMENTOS OR 6808 04:58:07,839 --> 04:58:08,674 PHOTOGRAPHY. 6809 04:58:08,674 --> 04:58:10,108 HAVING A BEREAVEMENT HEALTH CARE 6810 04:58:10,108 --> 04:58:11,376 PROFESSIONAL A DOULA OR SOCIAL 6811 04:58:11,376 --> 04:58:12,811 WORKER TO SUPPORT FAMILIES 6812 04:58:12,811 --> 04:58:16,448 DURING THE HOSPITAL STAY. 6813 04:58:16,448 --> 04:58:17,983 AFTER DELIVERY THE FOLLOWING 6814 04:58:17,983 --> 04:58:21,019 STEPS ARE RECOMMENDED TO THOSE 6815 04:58:21,019 --> 04:58:21,953 PROVIDING CARE TO THE PARENT. 6816 04:58:21,953 --> 04:58:25,390 PUT THE PATIENT IN RECOVERY AWAY 6817 04:58:25,390 --> 04:58:27,225 FROM OTHER PREGNANT PEOPLE AND 6818 04:58:27,225 --> 04:58:29,261 SOUNDS OF LIVE BORN INFANTS. 6819 04:58:29,261 --> 04:58:34,800 PLACE A MARKER ON THE DOOR SO 6820 04:58:34,800 --> 04:58:36,668 THE HEALTH CARE WORKERS ARE 6821 04:58:36,668 --> 04:58:40,205 AWARE OF THE LOSS OF THE ARE 6822 04:58:40,205 --> 04:58:41,573 INFANT AND SUPPORT THE PARENTS' 6823 04:58:41,573 --> 04:58:45,777 DECISION TO ENGAGE IN ACTIVITIES 6824 04:58:45,777 --> 04:58:47,813 AND INCLUDING PHOTOS, VIDEOS OR 6825 04:58:47,813 --> 04:58:49,047 OTHER MOMENTOS OF THE STILLBIRTH 6826 04:58:49,047 --> 04:58:50,148 CHILD IS IMPORTANT. 6827 04:58:50,148 --> 04:58:53,318 FOR THE POSTPARTUM WORKUP CREATE 6828 04:58:53,318 --> 04:58:54,553 RESOURCES TO HELP PARENTS BETTER 6829 04:58:54,553 --> 04:58:56,121 UNDERSTAND HOW THE INFORMATION 6830 04:58:56,121 --> 04:58:57,389 COLLECTED FROM TESTS AND 6831 04:58:57,389 --> 04:58:59,524 EXAMINES CAN HELP DERM DETERMINE 6832 04:58:59,524 --> 04:59:01,693 THE CAUSE OF THE DEATH AND 6833 04:59:01,693 --> 04:59:02,427 IDENTIFY IMMEDIATE HEALTH 6834 04:59:02,427 --> 04:59:05,731 CONCERNS FOR THE BIRTHING 6835 04:59:05,731 --> 04:59:07,366 PARENT, MANAGEMENT FOR 6836 04:59:07,366 --> 04:59:09,935 SUBSEQUENT PREGNANCIES, SET 6837 04:59:09,935 --> 04:59:11,770 EXPECTATIONS FOR HOW THE RESULTS 6838 04:59:11,770 --> 04:59:12,904 WILL BE COMMUNICATE AND TESTING 6839 04:59:12,904 --> 04:59:14,840 MAY NOT DETERMINE THE CAUSE OF 6840 04:59:14,840 --> 04:59:16,975 DEATH BUT EMPHASIZE TESTING CAN 6841 04:59:16,975 --> 04:59:18,710 BE DONE TO DETERMINE THE CAUSE 6842 04:59:18,710 --> 04:59:22,814 AND EMPHASIZE THE BABY WILL BE 6843 04:59:22,814 --> 04:59:25,517 TREATED WITH CARE AND RESPECT. 6844 04:59:25,517 --> 04:59:28,854 FOR POSTPARTUM CARE WE NEED TO 6845 04:59:28,854 --> 04:59:31,022 ADDRESS THE NEEDS OF THE BIRTH 6846 04:59:31,022 --> 04:59:33,825 AND PROVIDE RECOVERY FOR 6847 04:59:33,825 --> 04:59:38,296 FIRST-TIME PARENTS INCLUDING 6848 04:59:38,296 --> 04:59:38,964 PHYSICAL RECOVERY FROM 6849 04:59:38,964 --> 04:59:39,631 POSTPARTUM DEPRESSION. 6850 04:59:39,631 --> 04:59:42,601 THE RISK OF DEPRESSION IS HIGH 6851 04:59:42,601 --> 04:59:45,670 IN PARENTS WHO EXPERIENCE 6852 04:59:45,670 --> 04:59:46,271 STILLBIRTH. 6853 04:59:46,271 --> 04:59:48,640 PROVIDE CLOSE POSTPARTUM 6854 04:59:48,640 --> 04:59:51,076 FOLLOW-UP IS ESSENTIAL AND 6855 04:59:51,076 --> 04:59:51,309 TRAUMA. 6856 04:59:51,309 --> 04:59:52,778 PROVIDE NATIONAL AND LOCAL 6857 04:59:52,778 --> 04:59:54,179 RESOURCES FOR SUPPORT AND CREATE 6858 04:59:54,179 --> 04:59:55,647 STANDARDS OF CARE FOR OTHER 6859 04:59:55,647 --> 04:59:57,115 PROFESSIONS SUCH AS SOCIAL 6860 04:59:57,115 --> 04:59:59,384 WORKERS AND CHAPLAINS WHO MIGHT 6861 04:59:59,384 --> 05:00:02,487 INTERACT WITH FAMILIES 6862 05:00:02,487 --> 05:00:04,656 EXPERIENCING STILLBIRTH AND 6863 05:00:04,656 --> 05:00:07,392 CONSIDER AVAILABILITY STILLBIRTH 6864 05:00:07,392 --> 05:00:08,527 TAX CREDIT. 6865 05:00:08,527 --> 05:00:10,796 SO OVER ALL RECOMMENDATIONS AND 6866 05:00:10,796 --> 05:00:12,831 THEMES THAT WENT ACROSS ALL 6867 05:00:12,831 --> 05:00:14,633 THREE GROUPS. 6868 05:00:14,633 --> 05:00:15,333 STANDARDIZING DATA COLLECTION 6869 05:00:15,333 --> 05:00:19,404 AND REPORTING, EXPLORING NEW 6870 05:00:19,404 --> 05:00:20,405 TECHNOLOGIES SUCH AS ARTIFICIAL 6871 05:00:20,405 --> 05:00:22,307 INTELLIGENCE AND MACHINE 6872 05:00:22,307 --> 05:00:22,574 LEARNING. 6873 05:00:22,574 --> 05:00:24,176 CREATING A STILLBIRTH PREVENTION 6874 05:00:24,176 --> 05:00:27,078 BUNDLE AND TRADING SO A WORKUP 6875 05:00:27,078 --> 05:00:29,014 INCLUDING AUTOPSIES, GENETIC AND 6876 05:00:29,014 --> 05:00:31,316 APPROPRIATE BLOOD TESTS ARE 6877 05:00:31,316 --> 05:00:31,583 PERFORMED. 6878 05:00:31,583 --> 05:00:35,387 CONDUCTING PERINATAL AUDITS 6879 05:00:35,387 --> 05:00:36,988 AFTER STILLBIRTH AND SPECIFIC 6880 05:00:36,988 --> 05:00:38,356 PROTOCOLS CAN BE DEVELOPED AND 6881 05:00:38,356 --> 05:00:40,525 RESEARCH WAYS INTO PRODUCING THE 6882 05:00:40,525 --> 05:00:42,093 HEALTH DISPARITIES IN STILLBIRTH 6883 05:00:42,093 --> 05:00:44,162 AND ESTABLISHING CONTINUING 6884 05:00:44,162 --> 05:00:45,163 HEALTH CARE PROVIDER EDUCATION 6885 05:00:45,163 --> 05:00:46,064 RELATED TO STILLBIRTH AND 6886 05:00:46,064 --> 05:00:48,733 RESEARCH THE MOST EFFECTIVE 6887 05:00:48,733 --> 05:00:50,902 MENTAL HEALTH SUPPORT AFTER 6888 05:00:50,902 --> 05:00:52,737 STILLBIRTH AND MAKING THE WORKUP 6889 05:00:52,737 --> 05:00:54,105 MORE AFFORDABLE INCLUDING ACCESS 6890 05:00:54,105 --> 05:00:56,975 TO AUTOPSY AND GENETIC TESTING 6891 05:00:56,975 --> 05:00:58,810 AND PLACENTAL PATHOLOGY. 6892 05:00:58,810 --> 05:01:00,512 IT'S BEEN A PRIVILEGE ALONG WITH 6893 05:01:00,512 --> 05:01:03,181 DR. JAIN TO CO-CHAIR THIS 6894 05:01:03,181 --> 05:01:04,115 WORKING GROUP. 6895 05:01:04,115 --> 05:01:06,184 THE AMAZING WORK OF THIS GROUP 6896 05:01:06,184 --> 05:01:06,852 ON AN IMPORTANT TOPIC. 6897 05:01:06,852 --> 05:01:11,523 I WANT TO THANK THE ENTIRE NICHD 6898 05:01:11,523 --> 05:01:16,528 TEAM, NATASHA WILLIAMS AND 6899 05:01:16,528 --> 05:01:17,729 OTHERS FOR KEEPING THE WORK 6900 05:01:17,729 --> 05:01:20,732 GROUP ON TASK AND ORGANIZED AND 6901 05:01:20,732 --> 05:01:23,301 KEEPING THE DOCUMENTS OF THE 6902 05:01:23,301 --> 05:01:25,203 MEETINGS ORGANIZED AND KEEPING 6903 05:01:25,203 --> 05:01:28,173 US ON TASK. 6904 05:01:28,173 --> 05:01:29,474 THE MANY EXPERTS ON STILLBIRTH 6905 05:01:29,474 --> 05:01:33,845 WHO ED THEIR TIME AND EXPERTISE 6906 05:01:33,845 --> 05:01:38,216 AND THE PARENTS AND FAMILIES WHO 6907 05:01:38,216 --> 05:01:39,384 COURAGEOUSLY SHARED THEIR 6908 05:01:39,384 --> 05:01:41,419 STORIES AND HOPING FOR 6909 05:01:41,419 --> 05:01:42,053 IMPROVEMENT IN THE STILLBIRTH 6910 05:01:42,053 --> 05:01:43,388 RATES IN THE U.S. 6911 05:01:43,388 --> 05:01:53,565 THANK YOU. 6912 05:01:55,000 --> 05:01:56,768 >> THANK YOU FOR CO-CHAIRING THE 6913 05:01:56,768 --> 05:01:59,371 WORKING GROUP. 6914 05:01:59,371 --> 05:02:02,541 THE DETAILED RECOMMENDATIONS. 6915 05:02:02,541 --> 05:02:05,243 THANKS TO THE NICHD STAFF AS 6916 05:02:05,243 --> 05:02:07,379 WELL AS THE OFFICE OF 6917 05:02:07,379 --> 05:02:08,813 LEGISLATION AND PUBLIC POLICY 6918 05:02:08,813 --> 05:02:10,782 AND ETHICS AND NOW IT'S OPEN FOR 6919 05:02:10,782 --> 05:02:15,387 QUESTIONS AND ANSWERS. 6920 05:02:15,387 --> 05:02:19,391 QUESTIONS FOR UMA AND LUCKY ON 6921 05:02:19,391 --> 05:02:23,361 THE STILLBIRTH REPORT. 6922 05:02:23,361 --> 05:02:24,963 THANK YOU FOR THIS INCREDIBLE 6923 05:02:24,963 --> 05:02:28,033 WORK AND PRESENTATION. 6924 05:02:28,033 --> 05:02:30,569 I HAD ONE SPECIFIC QUESTION ON 6925 05:02:30,569 --> 05:02:33,305 THE PERINATAL AUTOPSY. 6926 05:02:33,305 --> 05:02:36,341 THEIR BARRIERS TO ACCESS THAT 6927 05:02:36,341 --> 05:02:38,043 ARE VERY DIFFICULT TO OVERCOME 6928 05:02:38,043 --> 05:02:41,846 AND WONDERING IF IN YOUR WORK 6929 05:02:41,846 --> 05:02:44,449 YOU CONSIDER THE NON-INVASIVE 6930 05:02:44,449 --> 05:02:48,420 IMAGING BASED AUTOPSY THAT WOULD 6931 05:02:48,420 --> 05:02:51,389 BE EASIER TO ACHIEVE AND RELATED 6932 05:02:51,389 --> 05:02:54,492 TO THAT WHAT'S OFTEN EXPERIENCE 6933 05:02:54,492 --> 05:02:57,028 IS AFTER AN AUTOPSY IT TAKES A 6934 05:02:57,028 --> 05:03:02,334 LONG TIME TO GET THE FULL REPORT 6935 05:03:02,334 --> 05:03:04,436 BACK AND WITHIN YOUR 6936 05:03:04,436 --> 05:03:06,338 RECOMMENDATIONS MAYBE I DID MISS 6937 05:03:06,338 --> 05:03:06,638 IT. 6938 05:03:06,638 --> 05:03:09,841 I DID SEE SOMETHING ABOUT A 6939 05:03:09,841 --> 05:03:13,578 FUTURE RECONTACTING OF THE 6940 05:03:13,578 --> 05:03:16,815 FAMILIES FOR A PRECONCEPTION 6941 05:03:16,815 --> 05:03:18,883 VISITOR AND ENCLOSURE VISIT 6942 05:03:18,883 --> 05:03:21,753 RELATED TO A PREVIOUS 6943 05:03:21,753 --> 05:03:22,354 STILLBIRTH. 6944 05:03:22,354 --> 05:03:25,924 >> THESE ARE ALL EXCELLENT 6945 05:03:25,924 --> 05:03:26,191 COMMENTS. 6946 05:03:26,191 --> 05:03:34,566 A LOT OF IS THE DETAILS OF THE 6947 05:03:34,566 --> 05:03:37,335 REPORT AND HOW DIFFICULT IT IS 6948 05:03:37,335 --> 05:03:42,407 TO GET AN QUALITY AUTOPSY AND 6949 05:03:42,407 --> 05:03:45,710 DOING A FETAL MRI CONSIDERED 6950 05:03:45,710 --> 05:03:46,144 THAT. 6951 05:03:46,144 --> 05:03:47,545 SO THE RECOMMENDATION THAT WE 6952 05:03:47,545 --> 05:03:53,284 ARE NEVER GOING TO TRAIN ENOUGH 6953 05:03:53,284 --> 05:03:55,120 PATHOLOGISTS, DEVELOPING 6954 05:03:55,120 --> 05:03:56,087 REGIONAL CENTERS OF EXCELLENCE 6955 05:03:56,087 --> 05:03:58,123 WHERE THE EVALUATIONS CAN TAKE 6956 05:03:58,123 --> 05:03:58,323 PLACE. 6957 05:03:58,323 --> 05:04:01,893 TRYING TO INCREASE THE TRAINING 6958 05:04:01,893 --> 05:04:03,228 OF QUALIFIED PEOPLE BUT AS WELL 6959 05:04:03,228 --> 05:04:06,464 AS SHARING THE EXPERTISE SO IT'S 6960 05:04:06,464 --> 05:04:08,266 AVAILABLE ACROSS THE COUNTRY IN 6961 05:04:08,266 --> 05:04:09,334 DEVELOPING THE CENTERS OF 6962 05:04:09,334 --> 05:04:09,868 EXCELLENCE. 6963 05:04:09,868 --> 05:04:12,837 IN TERMS OF THE RESULTS COME 6964 05:04:12,837 --> 05:04:15,273 BACK, YES, MONTHS LATER AND 6965 05:04:15,273 --> 05:04:16,808 FAMILIES OFTEN DON'T EVEN HEAR 6966 05:04:16,808 --> 05:04:17,809 THE RESULTS. 6967 05:04:17,809 --> 05:04:19,678 SO MAKING SURE THEY GET 6968 05:04:19,678 --> 05:04:21,212 FOLLOW-UP ABOUT THE RESULT AND 6969 05:04:21,212 --> 05:04:22,781 MAKING SURE THEY GET 6970 05:04:22,781 --> 05:04:25,216 INCORPORATED INTO THE FETAL 6971 05:04:25,216 --> 05:04:26,651 DEATH CERTIFICATE AND YOU HAVE 6972 05:04:26,651 --> 05:04:29,587 TO DO A FORMAL LEGAL AMENDMENT. 6973 05:04:29,587 --> 05:04:33,324 WE HAD TO KEEP HEARING FROM 6974 05:04:33,324 --> 05:04:35,994 FAMILIES THE CAUSE OF DEATH WAS 6975 05:04:35,994 --> 05:04:37,262 WRONG AND THEY SPEND MONEY TO 6976 05:04:37,262 --> 05:04:47,672 TRY TO GET IT CORRECTED. 6977 05:05:05,590 --> 05:05:07,358 >> THERE'S ONGOING MENTAL HEALTH 6978 05:05:07,358 --> 05:05:09,728 SUPPORT WE HEARD OVER AND OVER 6979 05:05:09,728 --> 05:05:11,596 AGAIN HOW FAMILIES FELT 6980 05:05:11,596 --> 05:05:13,398 ABANDONED BECAUSE THAT TOO IS 6981 05:05:13,398 --> 05:05:17,035 HARD TO GET PERINATAL PSYCHIATRY 6982 05:05:17,035 --> 05:05:17,469 AND MENTAL HEALTH. 6983 05:05:17,469 --> 05:05:27,645 RESOURCES. 6984 05:06:04,349 --> 05:06:09,187 >> AND WHEN THEY HAVE SLEEPLESS 6985 05:06:09,187 --> 05:06:10,622 NIGHTS GOING FROM ONE PREGNANCY 6986 05:06:10,622 --> 05:06:12,791 TO ANOTHER THINKING MY NEXT BABY 6987 05:06:12,791 --> 05:06:14,926 IS GOING TO DIE. 6988 05:06:14,926 --> 05:06:15,927 >> GREAT COMPREHENSIVE REPORT 6989 05:06:15,927 --> 05:06:17,529 AND THERE'S SO MUCH TO DO. 6990 05:06:17,529 --> 05:06:19,397 I WANT TO MAYBE COMMENT ON THE 6991 05:06:19,397 --> 05:06:29,674 TRAINING ASPECT. 6992 05:06:32,110 --> 05:06:39,150 THERE ARE TRAINING COURSES AND 6993 05:06:39,150 --> 05:06:43,588 THERE'S A COURSE IN THE NIS AND 6994 05:06:43,588 --> 05:06:47,392 HELP PROVIDE THE TOOLS FOR 6995 05:06:47,392 --> 05:06:48,126 DOCTORS TO PROVIDE TOOLS GOING 6996 05:06:48,126 --> 05:06:50,728 THROUGH THE ORDEAL. 6997 05:06:50,728 --> 05:06:53,298 >> THE FACT THAT IT'S IN THE 6998 05:06:53,298 --> 05:06:55,133 REPORT SAYING TRAINING NEEDS TO 6999 05:06:55,133 --> 05:06:58,269 BE DONE AND THERE IS SPECIALIZED 7000 05:06:58,269 --> 05:07:00,538 TRAINING FOR HANDLING FAMILIES 7001 05:07:00,538 --> 05:07:02,574 THAT SUFFERED AS STILLBIRTH AND 7002 05:07:02,574 --> 05:07:05,577 THE PREGNANCY AFTERWARDS. 7003 05:07:05,577 --> 05:07:08,112 THERE'S WAY MORE CLINIC THE 7004 05:07:08,112 --> 05:07:09,848 START OF THE NEW K FOR FAMILIES 7005 05:07:09,848 --> 05:07:12,617 THAT HAVE EXPERIENCED 7006 05:07:12,617 --> 05:07:14,352 STILLBIRTH. 7007 05:07:14,352 --> 05:07:17,589 ADAPTING THE TRAINING AND 7008 05:07:17,589 --> 05:07:21,626 TAKING IT INTO THE CURRICULUM 7009 05:07:21,626 --> 05:07:25,730 AND RESIDENT PHYSICIANS DON'T 7010 05:07:25,730 --> 05:07:28,066 GET TRAINING ON HOW IT HANDLE 7011 05:07:28,066 --> 05:07:28,333 THIS. 7012 05:07:28,333 --> 05:07:31,169 >> AND HI, LUCKY AND UMA. 7013 05:07:31,169 --> 05:07:32,036 THANK YOU VERY MUCH. 7014 05:07:32,036 --> 05:07:34,806 IT'S IMPRESSIVE BOTH CONGRESS 7015 05:07:34,806 --> 05:07:37,542 AND NICHD WANTED TO FOCUS TO 7016 05:07:37,542 --> 05:07:38,743 ADDRESS RECOMMENDATIONS AND TWO 7017 05:07:38,743 --> 05:07:39,010 QUESTIONS. 7018 05:07:39,010 --> 05:07:40,812 THE FIRST IS THE CHALLENGE OF 7019 05:07:40,812 --> 05:07:42,714 NOT HAVING A STANDARDIZED 7020 05:07:42,714 --> 05:07:43,014 DEFINITION. 7021 05:07:43,014 --> 05:07:46,084 IT DEPENDS ON WHICH STATE YOU'RE 7022 05:07:46,084 --> 05:07:48,653 IN AND HOW IT'S DEFINED. 7023 05:07:48,653 --> 05:07:49,721 WAS THAT PART OF YOUR 7024 05:07:49,721 --> 05:07:50,855 RECOMMENDATION AND IF SO DID YOU 7025 05:07:50,855 --> 05:08:01,332 HAVE A STANDARD DEFINITION? 7026 05:08:06,804 --> 05:08:09,841 >> FOR MISCARRIAGE AND PREGNANCY 7027 05:08:09,841 --> 05:08:16,047 LOSS THIS FALLS UNDER THE CDC SO 7028 05:08:16,047 --> 05:08:19,851 STANDARDIZING THAT. 7029 05:08:19,851 --> 05:08:26,157 >> AND WHO IMPLEMENT THE 7030 05:08:26,157 --> 05:08:26,524 RECOMMENDATIONS? 7031 05:08:26,524 --> 05:08:28,326 HOW DO WE MOVE FORWARD AND YOU 7032 05:08:28,326 --> 05:08:31,362 MENTIONED THE IMPORTANCE OF WHO 7033 05:08:31,362 --> 05:08:41,639 COVERS THE COSTS? 7034 05:08:41,639 --> 05:08:43,942 >> THE REPORT ON THE PLACENTA 7035 05:08:43,942 --> 05:08:45,343 FETAL MOVEMENT MEDICAL 7036 05:08:45,343 --> 05:08:47,378 CONDITIONS, RISK FACTORS, FALLS 7037 05:08:47,378 --> 05:08:49,914 TO NIH A LOT OF THE DATA 7038 05:08:49,914 --> 05:08:55,386 COLLECTION PIECES FALL TO THE 7039 05:08:55,386 --> 05:08:55,720 CDC. 7040 05:08:55,720 --> 05:08:59,390 IN TERMS OF FUNDING TO GET OFF 7041 05:08:59,390 --> 05:09:00,692 THE RECOMMENDATIONS AND THE COST 7042 05:09:00,692 --> 05:09:04,195 OF THE WORKUP IS A REAL ISSUE 7043 05:09:04,195 --> 05:09:04,963 FOR FAMILIES. 7044 05:09:04,963 --> 05:09:06,798 IT'S NOT COVERED BY INSURANCE SO 7045 05:09:06,798 --> 05:09:10,401 THAT'S ANOTHER ASPECT AND CARE 7046 05:09:10,401 --> 05:09:11,269 AFTER HAVING THE STILL BIRTH A 7047 05:09:11,269 --> 05:09:21,713 LOT OF IT IS NOT COVERED. 7048 05:09:29,087 --> 05:09:32,123 >> IT'S AN EFFORT THAT HAS TO 7049 05:09:32,123 --> 05:09:33,891 INCLUDE INHERENTLY ORGANIZATIONS 7050 05:09:33,891 --> 05:09:39,297 LIKE THE CDC AND HEALTH AND 7051 05:09:39,297 --> 05:09:40,098 HUMAN SERVICES AND NIMHD BECAUSE 7052 05:09:40,098 --> 05:09:42,567 THERE'S DIFFERENT ASPECTS TO 7053 05:09:42,567 --> 05:09:43,735 TACKLING A MALADY SUCH AS 7054 05:09:43,735 --> 05:09:44,035 STILLBIRTHS. 7055 05:09:44,035 --> 05:09:46,037 THERE'S A BODY OF RESEARCH THAT 7056 05:09:46,037 --> 05:09:46,938 NEEDS TO BE DONE EVEN IF YOU 7057 05:09:46,938 --> 05:09:57,448 COME UP WITH A DEFINITION AND 7058 05:09:57,949 --> 05:10:00,018 SOMETHING ALL STATES ARE WILLING 7059 05:10:00,018 --> 05:10:02,587 TO ADOPT AND THAT'S WHERE THE 7060 05:10:02,587 --> 05:10:07,091 CDC COMES IN TO PLAY THAT THAT 7061 05:10:07,091 --> 05:10:10,661 MAYBE ONE WAY OF BRINGING THE 7062 05:10:10,661 --> 05:10:13,064 STATES TOGETHER. 7063 05:10:13,064 --> 05:10:13,631 ULTIMATELY IMPLEMENTATION 7064 05:10:13,631 --> 05:10:14,298 SCIENCE AND IMPLEMENTATION OF 7065 05:10:14,298 --> 05:10:16,868 THE WORK ITSELF NEEDS TO HAPPEN 7066 05:10:16,868 --> 05:10:18,369 AT THE STATE LEVEL WHERE MOST OF 7067 05:10:18,369 --> 05:10:21,539 THE HEALTH CARE IS MANAGED AND 7068 05:10:21,539 --> 05:10:23,307 THAT'S WHERE WE DON'T -- IT'S 7069 05:10:23,307 --> 05:10:24,409 VERY HARD TO CONTROL THAT OR 7070 05:10:24,409 --> 05:10:34,786 MANAGE THAT AS YOU KNOW. 7071 05:10:34,786 --> 05:10:37,288 >> THANK YOU SO MUCH FOR THIS 7072 05:10:37,288 --> 05:10:37,622 WORK. 7073 05:10:37,622 --> 05:10:44,262 I JUST WANTED TO AMPLIFY THE 7074 05:10:44,262 --> 05:10:44,829 PATHOLOGY. 7075 05:10:44,829 --> 05:10:47,198 I THINK FOR PREGNANT INDIVIDUALS 7076 05:10:47,198 --> 05:10:49,434 WHO GO THROUGH THIS THEY PERHAPS 7077 05:10:49,434 --> 05:10:52,070 DON'T REALIZE YOU NEED VERY 7078 05:10:52,070 --> 05:10:54,238 SPECIAL EXPERTISE TO BE ABLE TO 7079 05:10:54,238 --> 05:10:56,441 LOOK AT THE RESULTS AND THEY'RE 7080 05:10:56,441 --> 05:10:58,476 NOT PARTICULARLY INFORMATIVE AND 7081 05:10:58,476 --> 05:10:59,477 THINK THE CENTERS OF EXCELLENCE 7082 05:10:59,477 --> 05:11:03,147 WILL BE REALLY IMPORTANT. 7083 05:11:03,147 --> 05:11:04,615 THE OTHER QUESTION I HAD I THINK 7084 05:11:04,615 --> 05:11:06,617 YOU MENTIONED LUCKY THAT YOU HAD 7085 05:11:06,617 --> 05:11:08,119 AN EXTRA MILLION DOLLARS TO 7086 05:11:08,119 --> 05:11:10,888 CONTINUE TO WORK FOR THE NEXT 7087 05:11:10,888 --> 05:11:12,356 YEAR AND I WAS JUST WONDERING IF 7088 05:11:12,356 --> 05:11:14,559 YOU HAVE A CHANCE TO THINK ABOUT 7089 05:11:14,559 --> 05:11:15,359 WHAT YOUR PLANS ARE MOVING 7090 05:11:15,359 --> 05:11:24,135 FORWARD. 7091 05:11:24,135 --> 05:11:30,074 >> THE CONSIDERATION ASSIGNMENT 7092 05:11:30,074 --> 05:11:33,544 FUNDED THE WORK WE JUST 7093 05:11:33,544 --> 05:11:34,812 FINISHED. 7094 05:11:34,812 --> 05:11:43,821 IF THERE'S MORE WORK TO BE DONE 7095 05:11:43,821 --> 05:11:46,657 IN THE WORKFORCE. 7096 05:11:46,657 --> 05:11:55,099 >> WE'LL ASK DR. CHAKTURA TO LET 7097 05:11:55,099 --> 05:11:56,200 US KNOW WHAT'S HAPPENING IN 7098 05:11:56,200 --> 05:11:56,934 TERMS OF RESEARCH. 7099 05:11:56,934 --> 05:12:01,272 >> SO ABSOLUTELY. 7100 05:12:01,272 --> 05:12:01,539 THANK YOU. 7101 05:12:01,539 --> 05:12:02,607 WE'VE ALREADY PUBLISHED A NOTICE 7102 05:12:02,607 --> 05:12:04,842 OF INTENT TO PUBLISH. 7103 05:12:04,842 --> 05:12:06,744 WE'RE NOT CALLING THEM CENTERS 7104 05:12:06,744 --> 05:12:07,178 OF EXCELLENCE. 7105 05:12:07,178 --> 05:12:10,982 WE'RE CALLING THEM THE STILL 7106 05:12:10,982 --> 05:12:13,518 BIRTH CONSORTIUM AND THERE WILL 7107 05:12:13,518 --> 05:12:14,852 BE AN OPPORTUNITY TO HAVE MORE 7108 05:12:14,852 --> 05:12:16,988 DETAILS ON IT AND HOPEFULLY IT 7109 05:12:16,988 --> 05:12:19,624 WILL BE PUBLISHED THIS SUMMER 7110 05:12:19,624 --> 05:12:22,827 AND WE'RE HOPING TO TAKE SOME OF 7111 05:12:22,827 --> 05:12:24,095 THE RECOMMENDATIONS WITH IT INTO 7112 05:12:24,095 --> 05:12:26,430 RESEARCH AND EXPAND ON THEM SO 7113 05:12:26,430 --> 05:12:29,934 WE CAN HAVE -- WE CAN MOVE THE 7114 05:12:29,934 --> 05:12:40,178 FIELD FORWARD. 7115 05:12:40,912 --> 05:12:45,283 WE HAVE A THREE-PRONG STRATEGY 7116 05:12:45,283 --> 05:12:48,519 AND RECEIVED FUNDS FROM THE 7117 05:12:48,519 --> 05:12:49,854 FIRSTY YEAR TO BE ABLE TO EXPAND 7118 05:12:49,854 --> 05:12:52,023 ON THE DATA COMPONENT. 7119 05:12:52,023 --> 05:13:00,064 WE HAVE TWO NETWORKS AND SUPPORT 7120 05:13:00,064 --> 05:13:03,067 THROUGH THE MATERNAL MEDICINE 7121 05:13:03,067 --> 05:13:05,236 NETWORK AND WHAT WE WANTED TO DO 7122 05:13:05,236 --> 05:13:08,673 IS HAVE THEM WORK TOGETHER TO 7123 05:13:08,673 --> 05:13:10,641 IMPROVE THE COLLECTION OF DATA 7124 05:13:10,641 --> 05:13:13,578 THAT THEY HAVE. 7125 05:13:13,578 --> 05:13:18,349 SO TO BE ABLE TO COLLECT DATA 7126 05:13:18,349 --> 05:13:19,450 AROUND STILLBIRTH AND PRETERM 7127 05:13:19,450 --> 05:13:20,952 BIRTH AS WELL. 7128 05:13:20,952 --> 05:13:22,820 SO THAT'S THE FIRST STEP WITH 7129 05:13:22,820 --> 05:13:27,792 THE SMALL AMOUNT OF MONEY WE'VE 7130 05:13:27,792 --> 05:13:28,326 RESOU 7131 05:13:28,326 --> 05:13:29,694 RECEIVED BETWEEN THE TWO 7132 05:13:29,694 --> 05:13:31,362 NETWORKS WE HAVE OVER 230,000 7133 05:13:31,362 --> 05:13:32,363 DELIVERIES PER YEAR BETWEEN THE 7134 05:13:32,363 --> 05:13:34,665 TWO NETWORKS SO THAT'S A 7135 05:13:34,665 --> 05:13:37,268 SIGNIFICANT NUMBER OF DELIVERIES 7136 05:13:37,268 --> 05:13:39,570 AND POTENTIAL TO COLLECT DATA 7137 05:13:39,570 --> 05:13:40,204 AROUND STILLBIRTH. 7138 05:13:40,204 --> 05:13:41,606 THAT WAS THE FIRST STEP. 7139 05:13:41,606 --> 05:13:46,544 THE SECOND STEP IS WE RELEASED A 7140 05:13:46,544 --> 05:13:49,180 NOTICE OF SPECIAL INTEREST 7141 05:13:49,180 --> 05:13:51,749 AROUND STILLBIRTH AND RESOURCED 7142 05:13:51,749 --> 05:13:53,918 APPLICATIONS THAT HOPEFULLY WILL 7143 05:13:53,918 --> 05:13:56,254 BE REVIEWED IN JUNE AND WE'LL 7144 05:13:56,254 --> 05:14:01,158 SEE WHERE THAT GOES AND THE 7145 05:14:01,158 --> 05:14:07,732 THIRD STEP IS THE NOFOs OR THE 7146 05:14:07,732 --> 05:14:11,269 CONSORTIUM AROUND STILLBIRTH. 7147 05:14:11,269 --> 05:14:15,373 THESE ARE THE ACTIVES WE'VE BEEN 7148 05:14:15,373 --> 05:14:25,483 DOING. 7149 05:14:58,949 --> 05:15:06,490 IT'S A TRAGEDY TO SEE THE 7150 05:15:06,490 --> 05:15:08,659 IMPACT AND WONDERFUL TO SEE THE 7151 05:15:08,659 --> 05:15:19,070 COMPREHENSIVE APPROACH. 7152 05:15:48,265 --> 05:15:49,800 AND THESE ARE TRAINING 7153 05:15:49,800 --> 05:15:52,737 INDIVIDUALS HOW TO AT LEAST 7154 05:15:52,737 --> 05:15:54,171 ADDRESS CURRENT APPROACHES GIVEN 7155 05:15:54,171 --> 05:15:57,141 BEST PRACTICES THAT WE HAVE NOW 7156 05:15:57,141 --> 05:15:58,876 GIVEN THERE'S SO MUCH NOT KNOWN 7157 05:15:58,876 --> 05:16:01,178 WE DO AT LEAST CAN PROVIDE SOME 7158 05:16:01,178 --> 05:16:02,380 DEGREE OF SUPPORT FOR FAMILIES 7159 05:16:02,380 --> 05:16:06,283 AND THE ACADEMY CAN BE HELPFUL 7160 05:16:06,283 --> 05:16:07,118 AS WELL AS AND DOING ADVOCACY ON 7161 05:16:07,118 --> 05:16:08,686 THE HILL AND LOOKING AT PAYMENTS 7162 05:16:08,686 --> 05:16:17,962 AND THINGS YOU'VE MENTIONED. 7163 05:16:17,962 --> 05:16:22,533 AND WE KNOW ABOUT $2 MILLION WE 7164 05:16:22,533 --> 05:16:23,367 ESTIMATE -- THERE'S ABOUT 2 7165 05:16:23,367 --> 05:16:25,369 MILLION STILLBIRTHS AROUND THE 7166 05:16:25,369 --> 05:16:29,673 WORLD IN VARYING DEGREES OF 7167 05:16:29,673 --> 05:16:30,975 SOCIO DEMOGRAPHIC POSITIONS AND 7168 05:16:30,975 --> 05:16:32,343 STARTING TO THINK WITH 7169 05:16:32,343 --> 05:16:34,545 PARTNERING WITH WHO AND OTHERS 7170 05:16:34,545 --> 05:16:37,615 AROUND THE TOPIC BECAUSE IF IT'S 7171 05:16:37,615 --> 05:16:39,450 DIFFICULT IN THE U.S. IT'S 7172 05:16:39,450 --> 05:16:41,786 IMPOSSIBLE AROUND THE WORLD AND 7173 05:16:41,786 --> 05:16:42,686 WHILE WE'VE SEEN UNDER FIVE 7174 05:16:42,686 --> 05:16:44,355 CHILD MORTALITY DROP AROUND THE 7175 05:16:44,355 --> 05:16:46,357 WORLD IN THE LAST 30 YEARS, 7176 05:16:46,357 --> 05:16:48,526 STILLBIRTHS WE DON'T REALLY KNOW 7177 05:16:48,526 --> 05:16:51,929 THE TRUE BURDEN AND THAT BURDEN 7178 05:16:51,929 --> 05:16:53,364 AS FAR AS WE CAN MEASURE IS 7179 05:16:53,364 --> 05:16:54,265 STATIC OVER THE PERIOD THE LAST 7180 05:16:54,265 --> 05:16:57,935 MANY DECADES. 7181 05:16:57,935 --> 05:17:00,905 WE ONLY HAVE A MILLION DOLLARS 7182 05:17:00,905 --> 05:17:03,207 BUT PARTNERING WITH OTHER 7183 05:17:03,207 --> 05:17:06,210 ORGANIZATIONS SUCH AS AAP RIGHT 7184 05:17:06,210 --> 05:17:08,879 AWAY AND W.H.O. IN SOME LONGER 7185 05:17:08,879 --> 05:17:10,915 TERM WAY MIGHT BE USEFUL AS 7186 05:17:10,915 --> 05:17:12,783 WELL. 7187 05:17:12,783 --> 05:17:16,921 >> THAT'S A GREAT POINT, BONNIE. 7188 05:17:16,921 --> 05:17:19,890 I MENTIONED SOME OF THE WORK 7189 05:17:19,890 --> 05:17:22,526 THAT WE ARE THEN IN THE MIDDLE 7190 05:17:22,526 --> 05:17:25,296 OF DOING TO THE AMERICAN ACADEMY 7191 05:17:25,296 --> 05:17:27,031 OF PEDIATRIC EXECUTIVE DIRECTOR 7192 05:17:27,031 --> 05:17:30,134 WHEN I SAW HIM AT THE MEETING 7193 05:17:30,134 --> 05:17:30,534 RECENTLY. 7194 05:17:30,534 --> 05:17:34,305 SO THEY'RE AWARE BUT WE WILL 7195 05:17:34,305 --> 05:17:37,007 HOPEFULLY WORK WITH THE NICHD TO 7196 05:17:37,007 --> 05:17:39,510 MAKE SURE THE REPORT IS 7197 05:17:39,510 --> 05:17:42,613 CIRCULATED AND SOCIALIZED WITH 7198 05:17:42,613 --> 05:17:45,583 ALL LEADING AGENCIES THAT CAN 7199 05:17:45,583 --> 05:17:46,750 HELP FURTHER CONVERSATIONS 7200 05:17:46,750 --> 05:17:49,019 AROUND THIS AND FOUNDATIONS 7201 05:17:49,019 --> 05:17:52,156 WHERE SEVERAL OF THE WORK CAN BE 7202 05:17:52,156 --> 05:17:53,624 ENHANCED INCLUDING FOUNDATIONS 7203 05:17:53,624 --> 05:17:57,194 SUCH AS THE GATES FOUNDATION AND 7204 05:17:57,194 --> 05:18:00,030 OBVIOUSLY THE WORLD HEALTH 7205 05:18:00,030 --> 05:18:00,364 ORGANIZATION. 7206 05:18:00,364 --> 05:18:03,367 THE GOOD THING AND I'LL CONFIRM 7207 05:18:03,367 --> 05:18:08,272 THE GOOD THING ABOUT THIS WAS 7208 05:18:08,272 --> 05:18:10,908 THAT WE HAD SEVERAL LEADING 7209 05:18:10,908 --> 05:18:12,710 MEMBERS OF THE INTERNATIONAL 7210 05:18:12,710 --> 05:18:14,578 COMMUNITY IN STILLBIRTHS 7211 05:18:14,578 --> 05:18:18,449 RESEARCH AND IMPLEMENTATION 7212 05:18:18,449 --> 05:18:19,416 SCIENCE INCLUDING PEOPLE FROM 7213 05:18:19,416 --> 05:18:27,358 THE SCANDINAVIAN COUNTRIES, 7214 05:18:27,358 --> 05:18:37,501 ENGLAND 7215 05:18:55,452 --> 05:18:58,155 >> AFTERWARDS WITH THE NEXT 7216 05:18:58,155 --> 05:19:00,891 PREGNANCY LUCKY MENTIONED IT AS 7217 05:19:00,891 --> 05:19:02,793 THE A DREAD EVERY TIME THE 7218 05:19:02,793 --> 05:19:03,894 BIRTHING PATIENT COMES IN THAT 7219 05:19:03,894 --> 05:19:04,895 THERE'S GOING TO BE ANOTHER 7220 05:19:04,895 --> 05:19:11,302 STILLBIRTH. 7221 05:19:11,302 --> 05:19:13,437 THE FAMILIES STILL TRAUMATIZED 7222 05:19:13,437 --> 05:19:16,206 THINKING ABOUT IT. 7223 05:19:16,206 --> 05:19:18,709 SO I THINK INVOLVING 7224 05:19:18,709 --> 05:19:19,710 PEDIATRICIANS AND TRAINING IS 7225 05:19:19,710 --> 05:19:21,245 REALLY IMPORTANT. 7226 05:19:21,245 --> 05:19:24,848 AND THE GLOBAL NETWORK AND GATES 7227 05:19:24,848 --> 05:19:27,384 ARE DOING IMPORTANT WORK ON 7228 05:19:27,384 --> 05:19:29,386 STILLBIRTH INTERNATIONALLY BUT 7229 05:19:29,386 --> 05:19:31,388 COLLABORATING WITH THEM AND AS 7230 05:19:31,388 --> 05:19:34,058 LUCKY MENTIONED WE DID 7231 05:19:34,058 --> 05:19:35,359 COLLABORATE WITH THE STILLBIRTH 7232 05:19:35,359 --> 05:19:39,196 BUNDLE THAT BULLET POINT ABOUT 7233 05:19:39,196 --> 05:19:41,932 BEST PRACTICES SO WE HAD LEADING 7234 05:19:41,932 --> 05:19:44,468 EXPERTS FROM THE U.K. AND 7235 05:19:44,468 --> 05:19:46,904 NETHERLANDS OF AUSTRALIA DISCUSS 7236 05:19:46,904 --> 05:19:50,841 THEIR STILLBIRTH BUNDLES AND 7237 05:19:50,841 --> 05:19:54,311 HAVE RATES OF 2-3 TO OUR 1.7 PER 7238 05:19:54,311 --> 05:19:56,413 1,000. 7239 05:19:56,413 --> 05:20:00,084 >> THERE ARE GROUPS BONNIE LIKE 7240 05:20:00,084 --> 05:20:05,489 THE GROUP IN UTAH LED BY DR. BOB 7241 05:20:05,489 --> 05:20:09,693 SILVER WHO HAVE NOW FORMED 7242 05:20:09,693 --> 05:20:10,361 INTERNATIONAL MOVEMENTS AROUND 7243 05:20:10,361 --> 05:20:11,829 STILL BIRTH, BIRTH PREVENTION. 7244 05:20:11,829 --> 05:20:16,300 MANY PEOPLE WERE PART OF THIS 7245 05:20:16,300 --> 05:20:17,067 EXERCISE WITH US. 7246 05:20:17,067 --> 05:20:19,403 YOUR POINT IS REALLY WELL TAKEN. 7247 05:20:19,403 --> 05:20:22,306 I THINK WE NEED TO EXPAND THE 7248 05:20:22,306 --> 05:20:23,474 IMPACT OF THE WORK GLOBALLY AS 7249 05:20:23,474 --> 05:20:23,674 WELL. 7250 05:20:23,674 --> 05:20:29,013 THANK YOU. 7251 05:20:29,013 --> 05:20:31,448 >> IS THERE ANY FURTHER 7252 05:20:31,448 --> 05:20:38,589 DISCUSSION. 7253 05:20:38,589 --> 05:20:41,358 >> WE WERE THINKING ABOUT THE 7254 05:20:41,358 --> 05:20:46,163 IMPACT ON THE FAMILY. 7255 05:20:46,163 --> 05:20:49,299 WITH TRAINEES AND RESIDENTS 7256 05:20:49,299 --> 05:20:50,668 THEY'RE PRETTY TRAUMATIZED WHEN 7257 05:20:50,668 --> 05:20:52,836 THAT HAPPENS AS WELL. 7258 05:20:52,836 --> 05:20:56,140 IT'S NOT JUST TRAINING AROUND HU 7259 05:20:56,140 --> 05:20:58,075 TO INTERFACE WITH THE PATIENTS 7260 05:20:58,075 --> 05:21:01,145 BUT ALSO HOW TO INTERFACE WITH 7261 05:21:01,145 --> 05:21:03,380 ONE'S OWN FEELINGS AROUND THE 7262 05:21:03,380 --> 05:21:06,517 DEATH. 7263 05:21:06,517 --> 05:21:08,619 AND THIS IS SUCH IMPORTANT WORK 7264 05:21:08,619 --> 05:21:12,122 AND I WANT TO COMMEND YOU ON THE 7265 05:21:12,122 --> 05:21:13,924 WORK YOU'VE DONE AND 7266 05:21:13,924 --> 05:21:14,825 PARTICULARLY ON THE FACT THAT 7267 05:21:14,825 --> 05:21:20,931 YOU'VE HIGHLIGHTED THE DISPARATE 7268 05:21:20,931 --> 05:21:22,633 EXPERIENCES OF DIFFERENT PEOPLE 7269 05:21:22,633 --> 05:21:25,035 BECAUSE THEY'RE REAL AND HAVE 7270 05:21:25,035 --> 05:21:27,204 IMPACTS ON NOT JUST THE PATIENT 7271 05:21:27,204 --> 05:21:27,871 BUT THE FAMILY SO THANK YOU FOR 7272 05:21:27,871 --> 05:21:33,310 THAT. 7273 05:21:33,310 --> 05:21:43,854 >> WE'RE DEVOTED TO HEARING FROM 7274 05:21:49,326 --> 05:21:50,894 EXPERIENCES AND WE HEARD FROM 7275 05:21:50,894 --> 05:21:54,231 FATHERS AND HOW THEY WERE 7276 05:21:54,231 --> 05:21:55,666 PROFOUNDLY AFFECTED. 7277 05:21:55,666 --> 05:21:57,201 IT WAS INTENSE THE WHOLE 7278 05:21:57,201 --> 05:21:58,936 SESSION. 7279 05:21:58,936 --> 05:22:01,071 WE ALL NEEDED TISSUES. 7280 05:22:01,071 --> 05:22:03,373 WE CAN SAY IT AFFECTS THE 7281 05:22:03,373 --> 05:22:05,709 FAMILIES BUT IT REALLY AFFECTS 7282 05:22:05,709 --> 05:22:06,777 THE FAMILIES. 7283 05:22:06,777 --> 05:22:11,515 I'M SORRY, LUCKY, I INTERRUPTED 7284 05:22:11,515 --> 05:22:11,782 YOU. 7285 05:22:11,782 --> 05:22:15,919 >> NO, I WANTED TO MENTION THE 7286 05:22:15,919 --> 05:22:18,522 FACT THAT PARTICIPATION OF THE 7287 05:22:18,522 --> 05:22:19,389 MOTHERS WHO HAVE LIVED THROUGH 7288 05:22:19,389 --> 05:22:22,760 THIS EXPERIENCE WAS ONE OF THE 7289 05:22:22,760 --> 05:22:25,262 MOST MOVING PARTS OF THIS ENTIRE 7290 05:22:25,262 --> 05:22:28,332 UNDERTAKING AND GLAD YOU 7291 05:22:28,332 --> 05:22:31,835 MENTIONED THE DADS WHO WERE -- 7292 05:22:31,835 --> 05:22:35,839 WE'RE NOT NORMALLY NOTICED IN 7293 05:22:35,839 --> 05:22:38,142 THE WHOLE OCCURRENCE BUT YOU'RE 7294 05:22:38,142 --> 05:22:38,542 ABSOLUTELY RIGHT. 7295 05:22:38,542 --> 05:22:43,380 THE FAMILIES THAT ARE IMPACTED 7296 05:22:43,380 --> 05:22:45,215 DISPROPORTIONATELY ARE THE ONES 7297 05:22:45,215 --> 05:22:47,117 WHO ALSO DON'T GET APPROPRIATE 7298 05:22:47,117 --> 05:22:47,684 FOLLOW-UP CARE OR ANY CARE 7299 05:22:47,684 --> 05:22:54,324 BEYOND THAT. 7300 05:22:54,324 --> 05:22:59,096 >> THERE'S A HIGHER RATE OF 7301 05:22:59,096 --> 05:23:00,364 DIVORCE. 7302 05:23:00,364 --> 05:23:05,202 IT IS TRAUMATIZING AND AS A 7303 05:23:05,202 --> 05:23:06,503 PHYSICIAN YOU FEEL INCREDIBLE 7304 05:23:06,503 --> 05:23:08,639 GUILT AND IT'S A TRAUMATIZING 7305 05:23:08,639 --> 05:23:11,108 WHEN YOU'RE PATIENT HAS A 7306 05:23:11,108 --> 05:23:11,408 STILLBIRTH. 7307 05:23:11,408 --> 05:23:15,379 I THINK HELPING PROVIDERS DEAL 7308 05:23:15,379 --> 05:23:17,681 WITH THE SITUATION AS WELL 7309 05:23:17,681 --> 05:23:20,184 BECAUSE IF WE DO PROPER TRAINING 7310 05:23:20,184 --> 05:23:22,052 AND IT WILL BE MORE AVAILABLE TO 7311 05:23:22,052 --> 05:23:24,688 FAMILIES AND BETTER ABLE TO DEAL 7312 05:23:24,688 --> 05:23:31,795 WITH THE SITUATION FOR FAMILIES. 7313 05:23:31,795 --> 05:23:33,897 >> THANK YOU TO ALL THE MEMBERS 7314 05:23:33,897 --> 05:23:35,332 OF THE WORKING GROUP, CYNTHIA 7315 05:23:35,332 --> 05:23:37,835 SERVED ON THE WORKING GROUP. 7316 05:23:37,835 --> 05:23:40,504 THANK YOU TO OUR STAFF AND MAY I 7317 05:23:40,504 --> 05:23:45,742 HAVE A MOTION NOW FOR APPROVAL 7318 05:23:45,742 --> 05:23:51,315 OF THE WORKING GROUP'S REPORT. 7319 05:23:51,315 --> 05:23:53,016 >> MOVE TO APPROVE. 7320 05:23:53,016 --> 05:23:56,286 >> MAY I HAVE A SECOND. 7321 05:23:56,286 --> 05:23:57,788 >> SECOND. 7322 05:23:57,788 --> 05:23:58,789 >> THANK YOU. 7323 05:23:58,789 --> 05:24:02,492 WE'LL HAVE A VOTE NOW. 7324 05:24:02,492 --> 05:24:12,970 YOU'RE VOTING FOR APPROVAL. 7325 05:24:18,242 --> 05:24:21,311 >> AGAIN WE HAVE 13. 7326 05:24:21,311 --> 05:24:23,814 WE'LL FIGURE OUT WHO IS ACTUALLY 7327 05:24:23,814 --> 05:24:24,848 ABLE TO VOTE. 7328 05:24:24,848 --> 05:24:26,416 WE HAVE WHAT WE NEED. 7329 05:24:26,416 --> 05:24:32,489 WE NEED TO LEARN HOW TO COUNT. 7330 05:24:32,489 --> 05:24:34,024 WE NEED TO INFORM PEOPLE THAT 7331 05:24:34,024 --> 05:24:35,225 HAVE NOT BEEN CLEARED YET THEY 7332 05:24:35,225 --> 05:24:35,525 CAN'T VOTE. 7333 05:24:35,525 --> 05:24:38,595 WE'LL FIGURE IT OUT. 7334 05:24:38,595 --> 05:24:40,664 SO WITH THAT I KNOW IT'S BEEN A 7335 05:24:40,664 --> 05:24:42,132 LONG DAY, THERE'S BEEN A LOT OF 7336 05:24:42,132 --> 05:24:43,066 INFORMATION THROWN AT YOU. 7337 05:24:43,066 --> 05:24:45,102 THE GOOD NEWS IS WE'RE COMING TO 7338 05:24:45,102 --> 05:24:45,736 AN END. 7339 05:24:45,736 --> 05:24:50,874 THIS IS CONCLUDE ROING -- 7340 05:24:50,874 --> 05:24:51,575 CONCLUDING THE FIRST DAY OF OUR 7341 05:24:51,575 --> 05:24:53,443 ADVISORY MEETING. 7342 05:24:53,443 --> 05:24:56,446 I WANT TO THANK YOU ALL IN 7343 05:24:56,446 --> 05:24:58,015 PERSON AND VIRTUALLY AND STAFF 7344 05:24:58,015 --> 05:25:00,217 FOR PARTICIPATING IN TODAY'S 7345 05:25:00,217 --> 05:25:00,517 ACTIVITIES. 7346 05:25:00,517 --> 05:25:02,886 WE LOOK FORWARD TO SEEING 7347 05:25:02,886 --> 05:25:03,820 EVERYONE TOMORROW. 7348 05:25:03,820 --> 05:25:08,091 THERE'LL BE A BRIEF OPEN SESSION 7349 05:25:08,091 --> 05:25:10,127 FIRST THAT WILL BE CONCEPT 7350 05:25:10,127 --> 05:25:11,295 CLEARANCE AND THEN IT WILL 7351 05:25:11,295 --> 05:25:13,196 BECOME A CLOSED MEETING WHEN WE 7352 05:25:13,196 --> 05:25:15,899 WILL DISCUSS SPECIFIC PROPOSALS. 7353 05:25:15,899 --> 05:25:16,934 SO THANK YOU ALL. 7354 05:25:16,934 --> 05:25:18,936 HAVE A WONDERFUL EVENING AND 7355 05:25:18,936 --> 05:25:19,436 WE'LL SEE YOU TOMORROW. 7356 05:25:19,436 --> 05:25:19,503