1 00:00:05,572 --> 00:00:06,673 >> GOOD MORNING, EVERYONE. 2 00:00:06,740 --> 00:00:08,274 WELCOME TO THOSE THAT TRAVELED 3 00:00:08,341 --> 00:00:11,411 TO THE NIH. THANK YOU SO MUCH. 4 00:00:11,478 --> 00:00:14,013 FOR THOSE THAT JOINED VIRTUALLY, 5 00:00:14,080 --> 00:00:15,582 WE APPRECIATE YOU BEING WITH US. 6 00:00:15,648 --> 00:00:19,152 I WILL CALL THE 114TH MEETING OF 7 00:00:19,219 --> 00:00:22,355 THE NATIONAL ARTHRITIS AND 8 00:00:22,422 --> 00:00:23,123 MUSCULOSKELETAL AND SKIN 9 00:00:23,189 --> 00:00:25,392 DISEASES ADVISORY COUNCIL TO 10 00:00:25,458 --> 00:00:26,626 ORDER. ALL MEETINGS ARE OPEN TO 11 00:00:26,693 --> 00:00:30,597 THE PUBLIC AS REQUIRED BY LAW 12 00:00:30,663 --> 00:00:31,898 EXCEPT REVIEW AND DISCUSSION AND 13 00:00:31,965 --> 00:00:34,033 GRANT APPLICATIONS AND RELATED 14 00:00:34,100 --> 00:00:35,535 INFORMATION THAT WILL BE 15 00:00:35,602 --> 00:00:37,370 ADDRESSED IN CLOSED SESSION THIS 16 00:00:37,437 --> 00:00:37,670 AFTERNOON. 17 00:00:37,737 --> 00:00:39,439 BEFORE WE PROCEED, I WOULD LIKE 18 00:00:39,506 --> 00:00:43,176 TO GO AROUND THE TABLE FOR THE 19 00:00:43,243 --> 00:00:47,747 COUNCIL MEMBERS AND ANYAM STAFF 20 00:00:47,814 --> 00:00:52,352 THAT ARE WITH US TODAY TO 21 00:00:52,419 --> 00:01:02,796 INTRODUCE THEMSELVES. 22 00:01:04,464 --> 00:01:08,535 I WILL GO TO VALENTINA. 23 00:01:08,601 --> 00:01:12,705 >> HELLO. I HAVE SPENT FIF 24 00:01:12,772 --> 00:01:15,175 YEARS IN SKIN LAB. 25 00:01:15,241 --> 00:01:18,244 >> HI, EVERYONE I'M AT JOHN 26 00:01:18,311 --> 00:01:21,815 HOPKINS IN BALTIMORE AND AD HOC 27 00:01:21,881 --> 00:01:24,818 MEMBER ON CASE YEAR 23. 28 00:01:24,884 --> 00:01:27,454 >> I'M THE FORMER EXECUTIVE 29 00:01:27,520 --> 00:01:28,788 DIRECTOR FOR AMERICAN SOCIETY OF 30 00:01:28,855 --> 00:01:32,025 BONE AND MINERAL RESEARCH. 31 00:01:32,091 --> 00:01:35,462 >> I AM BETH MCNALLY AND FROM 32 00:01:35,528 --> 00:01:37,597 NORTHWESTERN UNIVERSITY AND 33 00:01:37,664 --> 00:01:41,034 ADULT CARDIOLOGIST AND WORKED ON 34 00:01:41,100 --> 00:01:43,036 MYOPATHIC DISEASES FOR MOST OF 35 00:01:43,102 --> 00:01:44,270 MY CAREER. 36 00:01:44,337 --> 00:01:46,940 >> BOB CARTER AND DEPUTY 37 00:01:47,006 --> 00:01:52,812 DIRECTOR OF NIAMS AND DELIGHTED 38 00:01:52,879 --> 00:01:53,646 TO BE WITH YOU. 39 00:01:53,713 --> 00:01:56,850 >> I'M DIRECTOR OF DIVISION OF 40 00:01:56,916 --> 00:01:59,819 EXTRAMURAL ACTIVITIES AT NIAMS. 41 00:01:59,886 --> 00:02:03,189 >> I'M GAIL LESTER AND DIRECTOR 42 00:02:03,256 --> 00:02:13,800 OF EXTRAMURAL RESEARCH AT NIAMS 43 00:02:17,170 --> 00:02:21,474 SGR I'M AN AD HOC MEMBER ON A 44 00:02:21,541 --> 00:02:21,674 K23. 45 00:02:21,741 --> 00:02:25,111 >> I'M HEAD OF RESEARCH AT THE 46 00:02:25,178 --> 00:02:27,580 LUPUS RESEARCH ALLIANCE. THANK 47 00:02:27,647 --> 00:02:27,780 YOU. 48 00:02:27,847 --> 00:02:31,351 >> HELLO. I'M TAMMY AND 49 00:02:31,417 --> 00:02:35,088 DERMATOLOGIST AT SOUTHWESTERN 50 00:02:35,154 --> 00:02:36,789 AND [INDISCERNIBLE] IN THE SKIN 51 00:02:36,856 --> 00:02:40,193 AND AN AD HOC MEMBER. 52 00:02:40,260 --> 00:02:43,296 >> I'M MARIA AND RHEUMATOLOGIST 53 00:02:43,363 --> 00:02:46,499 AND CLINICAL EPIDEMIOLOGISTS AT 54 00:02:46,566 --> 00:02:49,402 UNIVERSITY OF TEXAS MD STANDARD. 55 00:02:49,469 --> 00:02:52,505 >> NOT SURE IF THEY HAVE 56 00:02:52,572 --> 00:02:53,573 MICROPHONES SHALANDA AND MARK, 57 00:02:53,640 --> 00:03:00,947 CAN YOU INTRODUCE YOURSELVES? 58 00:03:01,014 --> 00:03:07,554 >> GOOD MOTH R MOBLG S U -- GOO 59 00:03:07,620 --> 00:03:10,290 MORNING I'M MARK AND IT SUPPORT. 60 00:03:10,356 --> 00:03:14,727 >> I'M A MANAGEMENT ANALYST AT 61 00:03:14,794 --> 00:03:15,194 NIAMS. 62 00:03:15,261 --> 00:03:17,597 >> STEPHANIE AND MARY, SINCE YOU 63 00:03:17,664 --> 00:03:26,806 ARE PRESENTING CAN YOU -- 64 00:03:26,873 --> 00:03:29,876 >> GOOD MORNING I'M STEPHANIE 65 00:03:29,943 --> 00:03:32,812 AND CHIEF OF UN INSTITUTE AND 66 00:03:32,879 --> 00:03:34,714 POLICY PLANNING IN THE 67 00:03:34,781 --> 00:03:35,214 [INDISCERNIBLE] BRANCH. 68 00:03:35,281 --> 00:03:38,084 >> I'M MARIA GARCIA AND DIRECTOR 69 00:03:38,151 --> 00:03:41,487 OF EXTRAMURAL RESEARCH. 70 00:03:41,554 --> 00:03:43,323 >> BEFORE WE TURN TO FOLKS 71 00:03:43,389 --> 00:03:45,258 JOINING VIRTUALLY I WANT TO 72 00:03:45,325 --> 00:03:47,226 MENTION A LARGE NUMBER OF NIAM 73 00:03:47,293 --> 00:03:49,562 STAFF SITTING BEHIND US NOT AT A 74 00:03:49,629 --> 00:03:51,965 MICROPHONE AND IF THEY HAD AN 75 00:03:52,031 --> 00:03:54,367 OPPORTUNITY TO SPEAK UP DURING 76 00:03:54,434 --> 00:03:56,636 COUNCIL I HOPE THEY WILL COME TO 77 00:03:56,703 --> 00:04:00,073 THE TABLE AND INTRODUCE 78 00:04:00,139 --> 00:04:01,808 THEMSELVES AS WELL. 79 00:04:01,874 --> 00:04:03,543 REALLY GREAT TO HAVE THEM HERE. 80 00:04:03,610 --> 00:04:06,913 WHO DO WE HAVE ONLINE? 81 00:04:06,980 --> 00:04:12,485 FIRST OF ALL, ANY COUNCILMEMBERS 82 00:04:12,552 --> 00:04:22,195 ONLINE? 83 00:04:22,262 --> 00:04:24,664 ED, GREAT. WHY DON'T WE HAVE 84 00:04:24,731 --> 00:04:24,831 ED. 85 00:04:24,897 --> 00:04:26,833 >> GOOD MORNING I'M EDAND 86 00:04:26,899 --> 00:04:30,069 PROFESSOR OF BIOMEDICAL 87 00:04:30,136 --> 00:04:31,104 ENGINEERING AT [INDISCERNIBLE] 88 00:04:31,170 --> 00:04:33,306 DEPARTMENT OF BIOMEDICAL 89 00:04:33,373 --> 00:04:36,643 ENGINEERING AND RESEARCH IS IN 90 00:04:36,709 --> 00:04:41,080 BIOMATERIALS AND REGENERATIVE 91 00:04:41,147 --> 00:04:42,949 MEDIC 92 00:04:43,016 --> 00:04:43,216 MEDICINE. 93 00:04:43,282 --> 00:04:47,086 >> HI EVERYBODY I'M A 94 00:04:47,153 --> 00:04:48,988 RHEUMATOLOGIST AT SAN FRANCISCO 95 00:04:49,055 --> 00:04:51,190 GENERAL HOSPITAL AT USF AND 96 00:04:51,257 --> 00:04:53,359 CLINICAL RESEARCHER DOING 97 00:04:53,426 --> 00:04:56,162 EPIDEMIOLOGY OUTCOMES AND 98 00:04:56,229 --> 00:04:58,197 CLINICAL FORMATICS. 99 00:04:58,264 --> 00:05:00,400 >> CLINICAL BOB WANT TO 100 00:05:00,466 --> 00:05:00,833 INTRODUCE YOURSELF. 101 00:05:00,900 --> 00:05:02,702 >> GOOD MORNING EVERYBODY I'M 102 00:05:02,769 --> 00:05:05,672 BOB AND CLINICAL DIRECTOR FOR 103 00:05:05,738 --> 00:05:10,977 NIAMS INTRAMURAL RESEARCH 104 00:05:11,044 --> 00:05:14,580 PROGRAM RESEARCH IN SPONDYLITIS 105 00:05:14,647 --> 00:05:16,983 AND DOING RESEARCH THIS MORNING 106 00:05:17,050 --> 00:05:17,850 AND THANK YOU. 107 00:05:17,917 --> 00:05:20,653 >> COUNCIL MEMBERS ONLINE? 108 00:05:20,720 --> 00:05:22,822 I SEE SUE WHO WILL SPEAK LATER 109 00:05:22,889 --> 00:05:25,024 AND WE WILL HAVE HER INTRODUCE 110 00:05:25,091 --> 00:05:26,626 HERSELF WHEN WE GET TO THAT 111 00:05:26,693 --> 00:05:28,094 TIME. ANYBODY ELSE? 112 00:05:28,161 --> 00:05:29,729 ARE IKARE YOU ABLE TO -- 113 00:05:29,796 --> 00:05:31,330 EXECUTIVE OFFICER ARE YOU ABLE 114 00:05:31,397 --> 00:05:34,500 TO SAY HELLO. THERE WE GO. 115 00:05:34,567 --> 00:05:37,937 >> I'M A NIAMS EXECUTIVE 116 00:05:38,004 --> 00:05:38,304 OFFICER. 117 00:05:38,371 --> 00:05:41,574 >> I WOULD LIKE TO ACKNOWLEDGE 118 00:05:41,641 --> 00:05:43,876 MELINDA NELSON WHO IS HELPFUL TO 119 00:05:43,943 --> 00:05:45,578 COUNCIL MEETINGS AND NOT SURE IF 120 00:05:45,645 --> 00:05:48,114 SHE IS ABLE TO TURN ON HER 121 00:05:48,181 --> 00:05:51,184 CAMERA BUT THANKS FOR BEING 122 00:05:51,250 --> 00:05:56,522 HERE, MELINDA. 123 00:05:56,589 --> 00:05:58,758 I WILL MOVE UP TO THE PODIUM AND 124 00:05:58,825 --> 00:06:02,662 BEGIN THE MEETING WITH MY 125 00:06:02,729 --> 00:06:08,034 REPORT. 126 00:06:08,101 --> 00:06:10,136 LOGISTICS FIRST FROM 127 00:06:10,203 --> 00:06:10,470 D.A.R.E..IN. 128 00:06:10,536 --> 00:06:12,805 >> THANK YOU, LINDSEY. GOOD 129 00:06:12,872 --> 00:06:14,774 MORNING AND WELCOME, EVERYONE. 130 00:06:14,841 --> 00:06:17,076 I WILL GIVE A FEW QUICK 131 00:06:17,143 --> 00:06:18,578 LOGISTICAL REMINDERS BEFORE I GO 132 00:06:18,644 --> 00:06:23,116 THROUGH THE REST OF MY SKRUPT 133 00:06:23,182 --> 00:06:23,449 HE 134 00:06:23,516 --> 00:06:23,649 HERE. 135 00:06:23,716 --> 00:06:28,221 WE HAVE CHAT FOR THE ZOOM BUT 136 00:06:28,287 --> 00:06:29,455 PREFER YOU DON'T USE IT FOR 137 00:06:29,522 --> 00:06:31,057 DISCUSSIONS IT IS NOT PUBLIC AND 138 00:06:31,124 --> 00:06:32,925 IF YOU WANT TO SEND ME A 139 00:06:32,992 --> 00:06:34,927 QUESTION YOU CAN DO THAT AND 140 00:06:34,994 --> 00:06:36,229 PREFER YOU RAISE YOUR HAND IF 141 00:06:36,295 --> 00:06:37,797 YOU HAVE A COMMENT TO JOIN IN 142 00:06:37,864 --> 00:06:41,467 THE CONVERSATION AND FOR THOSE 143 00:06:41,534 --> 00:06:44,504 IN THE ROOM WE CAN ONLY HAVE 144 00:06:44,570 --> 00:06:46,172 FOUR MICROPHONES ON AT ONCE SO 145 00:06:46,239 --> 00:06:47,974 JUST FY I. TURN IT OFF IF YOU 146 00:06:48,040 --> 00:06:49,475 ARE NOT USING IT. 147 00:06:49,542 --> 00:06:51,477 AS I MENTIONED, THERE IS A 148 00:06:51,544 --> 00:06:53,746 NUMBER OF STAFF OR YOU HAVE SEEN 149 00:06:53,813 --> 00:06:55,848 A NUMBER OF STAFF ARE 150 00:06:55,915 --> 00:06:57,750 PARTICIPATING VIA ZOOM AND LARGE 151 00:06:57,817 --> 00:07:00,820 NUMBER OF THE PUBLIC WATCHING 152 00:07:00,887 --> 00:07:03,122 VIA LIVE VIDEO CAST AND IF STAFF 153 00:07:03,189 --> 00:07:06,058 MEMBERS WATCHING VIDEO CAST WITH 154 00:07:06,125 --> 00:07:09,796 AN URGENT COMMENT OR QUESTION 155 00:07:09,862 --> 00:07:12,698 YOU CAN E-MAIL SHALANDA 156 00:07:12,765 --> 00:07:16,202 WELLINGTON AT NIH.GOV WHO CAN 157 00:07:16,269 --> 00:07:18,738 REFER THE QUESTION TO ME AND 158 00:07:18,805 --> 00:07:21,207 ENCOURAGE VIEWERS TO SUBMIT 159 00:07:21,274 --> 00:07:23,876 COMMENTS IN WRITING 15 DAYS UP 160 00:07:23,943 --> 00:07:28,114 TO THE MEETING AND COMMENTS SENT 161 00:07:28,181 --> 00:07:32,585 TO NIAMS NIAMS. 162 00:07:32,652 --> 00:07:35,888 AGAIN, ALSO YOU CAN SEE THIS ON 163 00:07:35,955 --> 00:07:37,890 OUR WEBSITE. 164 00:07:37,957 --> 00:07:40,459 ANYONE ON THE ZOOM CALL MAY 165 00:07:40,526 --> 00:07:41,861 SPEAK AND MUTE YOUR LINE WHEN 166 00:07:41,928 --> 00:07:44,497 NOT SPEAKING AND PREFER YOU TO 167 00:07:44,564 --> 00:07:45,898 RAISE YOUR HAND AND WE WILL CALL 168 00:07:45,965 --> 00:07:47,466 ON YOU AND SHELL AN DAH WILL 169 00:07:47,533 --> 00:07:49,535 HELP WITH THE MUTING AND 170 00:07:49,602 --> 00:07:52,004 UNMUTING WHEN WE ARE TAKING 171 00:07:52,071 --> 00:07:53,673 VOTES AND ASK COUNSELORS AS MUCH 172 00:07:53,739 --> 00:07:55,274 AS POSSIBLE TO KEEP YOUR VIDEO 173 00:07:55,341 --> 00:07:57,310 ON DURING THE DISCUSSIONS EXCEPT 174 00:07:57,376 --> 00:07:58,978 DURING PRESENTATIONS TO ASK YOU 175 00:07:59,045 --> 00:08:01,147 TO TURN YOUR VIDEO OFF. 176 00:08:01,214 --> 00:08:03,182 IF YOU NEED COMPUTER SUPPORT OR 177 00:08:03,249 --> 00:08:05,585 HELP WITH ELECTRONIC COUNCIL 178 00:08:05,651 --> 00:08:09,121 BOOK DURING THE MEETING YOU CAN 179 00:08:09,188 --> 00:08:10,256 CONTACT SHELL AN DAH AND NOTICE 180 00:08:10,323 --> 00:08:12,758 OF THIS MEETING IS PUBLISHED IN 181 00:08:12,825 --> 00:08:14,560 THE FEDERAL REGISTER AND ARE 182 00:08:14,627 --> 00:08:16,128 REQUIRED TO ABSENT THEMSELVES 183 00:08:16,195 --> 00:08:18,130 DURING REVIEW OF APPLICATIONS IF 184 00:08:18,197 --> 00:08:19,699 PRESENCE WOULD APPEAR TO 185 00:08:19,765 --> 00:08:20,933 CONSTITUTE A CONFLICT OF 186 00:08:21,000 --> 00:08:22,568 INTEREST AND WOULD LIKE TO 187 00:08:22,635 --> 00:08:24,237 REMIND YOU ABOUT UPCOMING 188 00:08:24,303 --> 00:08:25,538 CONFLICT OF INTEREST REPORTING 189 00:08:25,605 --> 00:08:28,507 DATES AND HAD ONE IN FEBRUARY 190 00:08:28,574 --> 00:08:30,509 AND IN JUNE AND OCTOBER AND 191 00:08:30,576 --> 00:08:32,178 RECEIVING A REQUEST MEEZ RESPOND 192 00:08:32,245 --> 00:08:36,682 WITHIN 30 DAYS TO PARTICIPATE IN 193 00:08:36,749 --> 00:08:37,350 COUNCIL-RELATED ACTIVITIES AND 194 00:08:37,416 --> 00:08:38,484 FURTHER INFORMATION REGARDING 195 00:08:38,551 --> 00:08:40,019 CONFLICT OF INTEREST REGULATIONS 196 00:08:40,086 --> 00:08:42,788 ARE INCLUDED IN THE ELECTRONIC 197 00:08:42,855 --> 00:08:44,624 COUNCIL BOOK THAT YOU CAN CHECK 198 00:08:44,690 --> 00:08:44,857 THERE. 199 00:08:44,924 --> 00:08:46,259 I WOULD LIKE TO TURN TO THE 200 00:08:46,325 --> 00:08:47,627 CONSIDERATION OF THE MINUTES AND 201 00:08:47,693 --> 00:08:49,929 WE ARE GOING TO TAKE A VOTE AND 202 00:08:49,996 --> 00:08:55,167 COUNCIL MEMBERS ON ZOOM, PLEASE 203 00:08:55,234 --> 00:08:57,603 RAISE YOUR HAND AS NECESSARY. 204 00:08:57,670 --> 00:09:00,406 YOU HAVE SEEN MINUTES ON JANUARY 205 00:09:00,473 --> 00:09:02,608 30TH 2024 COUNCIL MEETING WERE 206 00:09:02,675 --> 00:09:05,077 POSTED IN ELECTRONIC COUNCIL 207 00:09:05,144 --> 00:09:07,213 BOOK AND DOES ANYONE HAVE 208 00:09:07,280 --> 00:09:12,251 COMMENTS OR CORRECTIONS? 209 00:09:12,318 --> 00:09:14,153 HEARING AND SEEING NONE I WILL 210 00:09:14,220 --> 00:09:16,689 MOVE WE APPROVE THE JANUARY 30TH 211 00:09:16,756 --> 00:09:17,657 COUNCIL MINUTES. 212 00:09:17,723 --> 00:09:19,292 DO I HAVE A SECOND? 213 00:09:19,358 --> 00:09:20,493 I HAVE A SECOND. 214 00:09:20,559 --> 00:09:21,427 THANK YOU. 215 00:09:21,494 --> 00:09:24,297 I ASK ALL THOSE OPPOSED TO THE 216 00:09:24,363 --> 00:09:25,498 MOTION TO PLEASE RAISE THEIR 217 00:09:25,564 --> 00:09:27,366 HAND OR SAY SOMETHING IF YOU ARE 218 00:09:27,433 --> 00:09:29,302 OPPOSED WITH THE APPROVAL. 219 00:09:29,368 --> 00:09:32,571 SEEING NO OBJECTIONS, THE MOTION 220 00:09:32,638 --> 00:09:33,339 PASSES. 221 00:09:33,406 --> 00:09:34,407 THANK YOU VERY MUCH. 222 00:09:34,473 --> 00:09:36,275 NOW I WOULD LIKE TO REMIND YOU 223 00:09:36,342 --> 00:09:39,011 ABOUT DATES OF FUTURE COUNCIL 224 00:09:39,078 --> 00:09:41,547 MEETINGS AND THEY ARE LISTED IN 225 00:09:41,614 --> 00:09:43,749 ELECTRONIC COUNCIL BOOK AND NEXT 226 00:09:43,816 --> 00:09:45,484 MEETING IS SEPTEMBER 17TH THAT 227 00:09:45,551 --> 00:09:47,787 IS A HYBRID MEETING AND GOING 228 00:09:47,853 --> 00:09:49,555 FORWARD WE PLAN TO HOLD THE 229 00:09:49,622 --> 00:09:51,657 SPRING MEETING THAT IS THIS 230 00:09:51,724 --> 00:09:53,259 MEETING IN PERSON AND THE FALL 231 00:09:53,326 --> 00:09:54,794 MEETING IS SEPTEMBER MEETING 232 00:09:54,860 --> 00:09:57,163 THAT IS HYBRID AND WINTER 233 00:09:57,229 --> 00:09:58,831 MEETING WILL BE FULLY VIRTUAL 234 00:09:58,898 --> 00:10:02,234 AND WE VERY MUCH APPRECIATE YOUR 235 00:10:02,301 --> 00:10:03,602 PARTICIPATION AND MAKE SURE 236 00:10:03,669 --> 00:10:06,605 DATES I WILL READ OFF NOW ARE ON 237 00:10:06,672 --> 00:10:09,175 YOUR CALENDAR SEPTEMBER 17TH, 238 00:10:09,241 --> 00:10:12,578 2024 AND JANUARY 2 EIGHTH, 2025. 239 00:10:12,645 --> 00:10:15,648 JUNE THIRD, 2025, AND SEPTEMBER 240 00:10:15,715 --> 00:10:16,816 EIGHTH, 2025. 241 00:10:16,882 --> 00:10:20,753 THESE ARE POSTED ON OUR WEBSITE. 242 00:10:20,820 --> 00:10:23,422 THANKS FOR YOUR ATTENTION. 243 00:10:23,489 --> 00:10:34,000 TURNING BACK TO DR. CHRISTY. 244 00:10:45,911 --> 00:10:47,980 >> OKAY. I HOPE YOU HAVE SEEN 245 00:10:48,047 --> 00:10:53,085 THE AGENDA. I WILL START BY 246 00:10:53,152 --> 00:10:59,058 EXPRESSING GREAT APPRECIATION 247 00:10:59,125 --> 00:11:02,528 FOR ELLEN WHO IS RETIRING FROM 248 00:11:02,595 --> 00:11:03,963 COUNCIL AND RECOGNIZE WHAT A 249 00:11:04,030 --> 00:11:07,366 TIME COMMITMENT THIS HAS 250 00:11:07,433 --> 00:11:08,934 ENTAILED AND DEEPLY APPRECIATE 251 00:11:09,001 --> 00:11:19,478 HER DEDICATION TO SERVICE. 252 00:11:25,117 --> 00:11:29,021 OKAY. ALL RIGHT. THANK YOU TO 253 00:11:29,088 --> 00:11:32,525 DR. GABO LEEZI AND WOULD LIKE TO 254 00:11:32,591 --> 00:11:35,661 INTRODUCE A FEW NEW COUNCIL 255 00:11:35,728 --> 00:11:38,397 MEMBERS, ONE PERMANENT AND 3 AD 256 00:11:38,464 --> 00:11:42,334 HOC AND WILL INTRODUCE KARL 257 00:11:42,401 --> 00:11:44,470 JEFFSON WHO THIS IS FIRST 258 00:11:44,537 --> 00:11:47,073 MEETING OF FOUR-YEAR TERM AND 259 00:11:47,139 --> 00:11:48,574 PLEASED TO REPORT WE HAVE 7 260 00:11:48,641 --> 00:11:50,543 OTHER UPCOMING COUNCIL MEMBERS 261 00:11:50,609 --> 00:11:52,445 THAT WE ARE EXPECTING TO BE 262 00:11:52,511 --> 00:11:53,679 JOINING US IN SEPTEMBER. 263 00:11:53,746 --> 00:11:56,749 WE ARE REALLY EXCITED TO WELCOME 264 00:11:56,816 --> 00:12:00,019 ALL OF THEM AND DR. JEPSON IS 265 00:12:00,086 --> 00:12:02,688 ASSOCIATE DEAN OF RESEARCH AND 266 00:12:02,755 --> 00:12:05,491 PROFESSOR OF ORTHOPEAKEDIC 267 00:12:05,558 --> 00:12:08,127 SURGERY AND BIOENGINEERING 268 00:12:08,194 --> 00:12:10,996 PRIMARY FOCUS OF RESEARCH HAS 269 00:12:11,063 --> 00:12:13,566 BEEN HOW COMPLEX ADAPTIVE 270 00:12:13,632 --> 00:12:14,600 SYSTEMS LIKE BONE ESTABLISH 271 00:12:14,667 --> 00:12:16,635 FUNCTION DURING GROWTH AND 272 00:12:16,702 --> 00:12:18,938 MAINTAIN FUNCTION DURING AGING 273 00:12:19,004 --> 00:12:21,040 AND RECENTLY LAB DISCOVERED 274 00:12:21,107 --> 00:12:22,274 NOVEL ASSOCIATION BETWEEN 275 00:12:22,341 --> 00:12:24,176 MEASURE OF EXTERNAL BONE SIZE 276 00:12:24,243 --> 00:12:25,845 AND INTERNAL REMODELING PROCESS 277 00:12:25,911 --> 00:12:27,847 THAT IS CENTRAL TO ESTABLISHING 278 00:12:27,913 --> 00:12:30,483 AND MAINTAINING BONE STRENGTH. 279 00:12:30,549 --> 00:12:34,887 DR. JEPSON IS A PROLIFIC 280 00:12:34,954 --> 00:12:36,722 INVESTIGATOR AND PUBLICATIONS 281 00:12:36,789 --> 00:12:39,191 AND NUMEROUS GRANTS AWARDS AND 282 00:12:39,258 --> 00:12:40,693 DELIGHTED TO HAVE HIM JOINING 283 00:12:40,759 --> 00:12:41,660 THE COUNCIL. 284 00:12:41,727 --> 00:12:44,230 AS WE DID WITH OUR PAST FEW 285 00:12:44,296 --> 00:12:46,866 MEETINGS, WE INVITED OUTSTANDING 286 00:12:46,932 --> 00:12:49,034 INVESTIGATORS FROM NIAMS POOL OF 287 00:12:49,101 --> 00:12:54,106 MENTORED KO1, KO8, AND K23 AWARD 288 00:12:54,173 --> 00:12:56,308 RECIPIENTS TO PARTICIPATE IN THE 289 00:12:56,375 --> 00:12:57,877 COUNCIL MEETING AS AD HOC 290 00:12:57,943 --> 00:12:58,711 MEMBERS. 291 00:12:58,777 --> 00:13:01,380 IDEA IS TO BOTH EXPOSE THEM TO 292 00:13:01,447 --> 00:13:03,182 COUNCIL AND IMPORTANTLY FOR US 293 00:13:03,249 --> 00:13:05,951 TO OBTAIN INPUT FROM SCIENTISTS 294 00:13:06,018 --> 00:13:09,021 AT AN EARLIER CAREER STAGE THAN 295 00:13:09,088 --> 00:13:10,923 COUNCIL MEMBERS TYPICALLY ARE. 296 00:13:10,990 --> 00:13:15,995 TODAY, WE ARE JOINED BY TAMIA 297 00:13:16,061 --> 00:13:18,764 HARRISON TRANAT UNIVERSITY OF 298 00:13:18,831 --> 00:13:21,700 TEXAS SOUTHWESTERN MEDICAL 299 00:13:21,767 --> 00:13:24,803 CENTER AND [INDISCERNIBLE] OF 300 00:13:24,870 --> 00:13:25,538 TUFTS UNIVERSITY AND 301 00:13:25,604 --> 00:13:29,375 [INDISCERNIBLE] OF JOHNS HOPKINS 302 00:13:29,441 --> 00:13:33,279 UNIVERSITY. DR. TRAN -- SKIN 303 00:13:33,345 --> 00:13:34,780 MICROBIOTA AND HOW THEY IMPACT 304 00:13:34,847 --> 00:13:38,617 THE SKIN'S IMMUNE SYSTEM. DR. 305 00:13:38,684 --> 00:13:39,885 CAST YOU ARY IS ASSISTANT 306 00:13:39,952 --> 00:13:41,353 PROFESSOR OF MEDICINE DEVELOPING 307 00:13:41,420 --> 00:13:43,422 AND TESTING MEASUREMENT OF 308 00:13:43,489 --> 00:13:45,524 PATIENT CENTERED OUTCOMES IN 309 00:13:45,591 --> 00:13:47,860 LUPUS AND INVESTIGATING 310 00:13:47,927 --> 00:13:49,728 IMPLEMENTATION OF PATIENT 311 00:13:49,795 --> 00:13:51,597 REPORTED OUTCOME MEASURES TO 312 00:13:51,664 --> 00:13:52,932 IMPROVE ROUTINE CARE FOR 313 00:13:52,998 --> 00:13:55,768 INDIVIDUALS WITH LUPUS. DR. MEG 314 00:13:55,834 --> 00:13:58,070 ALLEY IS ASSISTANT PROFESSOR OF 315 00:13:58,137 --> 00:14:01,307 MEDICINE AND INCLUDES 316 00:14:01,373 --> 00:14:03,008 ASSOCIATION BETWEEN CANCER AND 317 00:14:03,075 --> 00:14:04,610 MYOCITIS AND PATIENT REPORTED 318 00:14:04,677 --> 00:14:07,646 OUTCOME MEASURES AND AUTO 319 00:14:07,713 --> 00:14:09,415 ANTIBODIES AND REALLY 320 00:14:09,481 --> 00:14:10,516 APPRECIATED GETTING THE 321 00:14:10,583 --> 00:14:12,885 OPPORTUNITY TO SPEAK WITH CLIGS 322 00:14:12,952 --> 00:14:15,020 TOEF FER LAST NIGHT AT THE 323 00:14:15,087 --> 00:14:17,923 COUNCIL DINNER. PLEASURE AND 324 00:14:17,990 --> 00:14:20,025 WARM WELCOME TO ALL OF YOU AND 325 00:14:20,092 --> 00:14:21,594 FEEL FREE TO PARTICIPATE FULLY. 326 00:14:21,660 --> 00:14:24,563 WE LOVE HEARING FROM YOU. YOU 327 00:14:24,630 --> 00:14:26,932 HAVE VALUABLE PERSPECTIVES AND 328 00:14:26,999 --> 00:14:28,234 REPORT TODAY WILL FOCUS IN THREE 329 00:14:28,300 --> 00:14:30,803 GENERAL AREAS AND WILL REVIEW 330 00:14:30,869 --> 00:14:34,907 STATUS OF NIH AND NIAMS BUDGETS 331 00:14:34,974 --> 00:14:37,443 AND HIGHLIGHT PERSONAL CHANGES 332 00:14:37,509 --> 00:14:40,646 WIDELY AT NIH AND AT NIAMS AND 333 00:14:40,713 --> 00:14:43,148 WILL HIGHLIGHT ACTIVITIES OF 334 00:14:43,215 --> 00:14:44,350 GENERAL INTEREST TO YOU. 335 00:14:44,416 --> 00:14:47,219 SO, I WILL START BY PROVIDING 336 00:14:47,286 --> 00:14:50,022 OVERVIEW AND UPDATE ON NIH AND 337 00:14:50,089 --> 00:14:52,958 NIAMS BUDGET. YOU MAY KNOW BACK 338 00:14:53,025 --> 00:14:55,995 ON MARCH 23RD, PRESIDENT BIDEN 339 00:14:56,061 --> 00:14:58,797 SIGNED FURTHER CONSOLIDATED 340 00:14:58,864 --> 00:15:00,532 APROPRIATION ACT OF 2024 INTO 341 00:15:00,599 --> 00:15:03,869 LAW AND IT PROVIDED FUNDING TO 342 00:15:03,936 --> 00:15:06,238 NIH FOR THE CURRENT FISCAL YEAR 343 00:15:06,305 --> 00:15:08,574 THAT CONCLUDES IN SEPTEMBER 30TH 344 00:15:08,641 --> 00:15:10,276 OF 2024. 345 00:15:10,342 --> 00:15:12,945 SO, QUITE LATE IN THE YEAR FOR 346 00:15:13,012 --> 00:15:16,148 US TO GET THAT FINAL -- THOSE 347 00:15:16,215 --> 00:15:17,116 FINAL FIGURES. 348 00:15:17,182 --> 00:15:20,019 THAT BILL PROVIDES 47.4 BILLION 349 00:15:20,085 --> 00:15:24,056 DOLLARS FOR THE NIH THAT IS A 350 00:15:24,123 --> 00:15:26,091 .7% DECREASE FROM THE LAST 351 00:15:26,158 --> 00:15:27,693 FISCAL YEAR AND NIAMS RECEIVED 352 00:15:27,760 --> 00:15:30,829 AN OPERATING BUDGET OF 687.6 353 00:15:30,896 --> 00:15:32,898 MILLION THAT IS THE SAME AS LAST 354 00:15:32,965 --> 00:15:33,098 YEAR. 355 00:15:33,165 --> 00:15:34,833 WE HAVE A FLAT BUDGET. 356 00:15:34,900 --> 00:15:39,071 WE ARE GRATEFUL TO CONGRESS, 357 00:15:39,138 --> 00:15:42,241 HOWEVER, FOR CONTINUED SUPPORT 358 00:15:42,308 --> 00:15:45,210 DURING CHALLENGING BUDGETARY 359 00:15:45,277 --> 00:15:48,480 TIMES FOR RECOGNITION OF 360 00:15:48,547 --> 00:15:51,950 IMPORTANT -- NOW, ON MARCH 11TH, 361 00:15:52,017 --> 00:15:53,986 SO SHORTLY BEFORE THE PASSAGE OF 362 00:15:54,053 --> 00:15:57,456 THE CURRENT FISCAL YEAR BUDGET, 363 00:15:57,523 --> 00:16:00,726 PRESIDENT BIDEN ALSO RELEASED 364 00:16:00,793 --> 00:16:02,594 FISCAL YEAR 2025 BUDGET REQUEST 365 00:16:02,661 --> 00:16:04,430 TO CONGRESS THAT WOULD BEGIN 366 00:16:04,496 --> 00:16:06,031 OCTOBER 1ST THIS YEAR AND AMOUNT 367 00:16:06,098 --> 00:16:08,667 REQUESTED FOR NIH IS 51.6 368 00:16:08,734 --> 00:16:11,470 BILLION WHICH IS INCREASE OF 5% 369 00:16:11,537 --> 00:16:14,406 OVER LAST YEAR'S FINAL BUDGET. 370 00:16:14,473 --> 00:16:17,176 FOR NIAMS, AMOUNT IN HIS BUDGET 371 00:16:17,242 --> 00:16:20,546 IS 690 MILLION AND WOULD 372 00:16:20,612 --> 00:16:23,182 REPRESENT INCREASE OF .3% OVER 373 00:16:23,248 --> 00:16:24,483 LAST YEAR'S BUDGET. 374 00:16:24,550 --> 00:16:26,752 THERE IS A LONG WAY TO GO BEFORE 375 00:16:26,819 --> 00:16:29,021 WE UNDERSTAND WHAT BUDGETS WILL 376 00:16:29,088 --> 00:16:30,823 BE FOR NEXT YEAR AND NEXT FEW 377 00:16:30,889 --> 00:16:33,292 MONTHS HOUSE AND SENATE WILL 378 00:16:33,359 --> 00:16:34,960 DEVELOP THEIR OWN BUDGET 379 00:16:35,027 --> 00:16:37,296 PROPOSALS FOR FISCAL YEAR 2025 380 00:16:37,363 --> 00:16:39,431 AND THOSE WILL BE RECONCILED AND 381 00:16:39,498 --> 00:16:42,634 FINAL BILL WILL GO TO THE 382 00:16:42,701 --> 00:16:45,104 PRESIDENT FOR HIS SIGNATURE. 383 00:16:45,170 --> 00:16:48,040 NOW, BASED ON FINAL NUMBERS WE 384 00:16:48,107 --> 00:16:50,642 GOT BACK IN MARCH FOR FISCAL 385 00:16:50,709 --> 00:16:52,711 2024, OUR CURRENT YEAR, WE 386 00:16:52,778 --> 00:16:55,714 UPDATED OUR FUNDING PLAN ON 387 00:16:55,781 --> 00:16:58,117 NIAMS WEBSITE. 388 00:16:58,183 --> 00:17:02,554 IT SHOWS A PAY LINE FOR MOST 389 00:17:02,621 --> 00:17:04,656 INVESTIGATORS SET AT 8%, VERY 390 00:17:04,723 --> 00:17:05,457 TIGHT PAY LINE. 391 00:17:05,524 --> 00:17:08,894 I WANT TO EMPHASIZE AS WE HAVE 392 00:17:08,961 --> 00:17:10,496 HAD SPOKEN ABOUT IN PREVIOUS 393 00:17:10,562 --> 00:17:13,932 SESSIONS THAT THIS LOWER PAY 394 00:17:13,999 --> 00:17:15,467 LINE SOMEWHAT LOWER IN LAST 395 00:17:15,534 --> 00:17:17,703 COUPLE YEARS DOESN'T MEAN WE 396 00:17:17,770 --> 00:17:21,774 WOULD PAY FEWER R01 GRANTS BUT 397 00:17:21,840 --> 00:17:25,377 INMEANS WE ARE EMPOWERING 398 00:17:25,444 --> 00:17:26,445 PROGRAM DIRECTORS TO 399 00:17:26,512 --> 00:17:27,880 APPLICATIONS ABOVE THE PAY LINE 400 00:17:27,946 --> 00:17:30,182 TO DECIDE WHICH ONES SHOULD BE 401 00:17:30,249 --> 00:17:31,683 RECOMMENDED FOR FUNDING AND YOU 402 00:17:31,750 --> 00:17:33,152 CAN SEE IN THE SLIDE, HOWEVER, 403 00:17:33,218 --> 00:17:35,354 WE CONTINUE TO HAVE A GENEROUS 404 00:17:35,421 --> 00:17:37,856 PAY LINE FOR R01 APPLICATIONS 405 00:17:37,923 --> 00:17:40,793 COMING IN FROM EARLY STAGE 406 00:17:40,859 --> 00:17:42,327 INVESTIGATARS AND THAT PAY LINE 407 00:17:42,394 --> 00:17:46,064 IS 15% EARLY STAGE, SAME AS LAST 408 00:17:46,131 --> 00:17:46,532 YEAR. 409 00:17:46,598 --> 00:17:49,301 AS NOTED EARLIER AND 410 00:17:49,368 --> 00:17:53,105 COMMUNICATED WIDELY WITH COUNCIL 411 00:17:53,172 --> 00:17:54,373 MEETINGS NEWSLETTERS DIRECTORS 412 00:17:54,440 --> 00:17:56,208 LETTERS PUBLISHED ON THE 413 00:17:56,275 --> 00:17:58,243 WEBSITE, WE ARE MOVING FORWARD 414 00:17:58,310 --> 00:18:00,479 AND BROADENING SUPPORT FOR 415 00:18:00,546 --> 00:18:01,847 MISSION BY EXPANDING FUNDING 416 00:18:01,914 --> 00:18:03,081 APPROACH AND WANT TO GO THROUGH 417 00:18:03,148 --> 00:18:04,950 THIS AGAIN AND WE CAN DISCUSS IT 418 00:18:05,017 --> 00:18:07,119 LATER IF THERE ARE ADDITIONAL 419 00:18:07,186 --> 00:18:08,921 QUESTIONS. 420 00:18:08,987 --> 00:18:10,422 HISTORICALLY NIAMS PAID MOST 421 00:18:10,489 --> 00:18:13,292 APPLICATION AS CORDING TO A 422 00:18:13,358 --> 00:18:14,760 STRICT PAY LINE DRIVEN APPROACH 423 00:18:14,827 --> 00:18:17,095 AND LIMITED FUNDS AVAILABLE TO 424 00:18:17,162 --> 00:18:18,964 AWARD APPLICATIONS IDENTIFIED AS 425 00:18:19,031 --> 00:18:20,999 BEING HIGH PRIORITY THAT SCORED 426 00:18:21,066 --> 00:18:23,101 BEYOND THE PUBLISHED PAY LINE 427 00:18:23,168 --> 00:18:25,704 AND THOSE DECISIONS WERE MEANT 428 00:18:25,771 --> 00:18:28,006 AT VERY END OF FISCAL YEAR AND 429 00:18:28,073 --> 00:18:29,775 DOLLARS FLOWED BACK TO THE 430 00:18:29,842 --> 00:18:31,076 INSTITUTE THAT WE HAD TO SPEND 431 00:18:31,143 --> 00:18:33,312 AND STARTING THIS YEAR MOVING 432 00:18:33,378 --> 00:18:35,581 FORWARD NIAMS WILL SET ASIDE 433 00:18:35,647 --> 00:18:38,250 INCREASED FUNDING TO SUPPORT 434 00:18:38,317 --> 00:18:40,319 APPLICATIONS DEEMED IMPORTANT TO 435 00:18:40,385 --> 00:18:42,387 NIAMS PORTFOLIO SCORING BEYOND 436 00:18:42,454 --> 00:18:44,490 THE PAYLINE AND REFER TO THE 437 00:18:44,556 --> 00:18:45,791 PROCESS AS SELECT PAY. 438 00:18:45,858 --> 00:18:47,493 EVOLVING APPROACH WILL INCREASE 439 00:18:47,559 --> 00:18:50,062 FUNDS AVAILABLE FOR HIGH 440 00:18:50,128 --> 00:18:51,163 PRIORITY PROJECTS ALLOWING 441 00:18:51,230 --> 00:18:53,832 INSTITUTE TO BETTER ADDRESS GAPS 442 00:18:53,899 --> 00:18:55,567 AND OPPORTUNITIES IN BROAD 443 00:18:55,634 --> 00:18:57,669 PORTFOLIO MISSION AREAS AND 444 00:18:57,736 --> 00:19:00,205 SUPPORT WIDE SPAN OF SCIENTIFIC 445 00:19:00,272 --> 00:19:02,307 PERSPECTIVES AND INVESTIGATIVE 446 00:19:02,374 --> 00:19:03,141 APPROACHES. 447 00:19:03,208 --> 00:19:04,343 IMPORTANTLY, I WANT TO NOTE THAT 448 00:19:04,409 --> 00:19:06,411 TOTAL AMOUNT OF FUNDS AVAILABLE 449 00:19:06,478 --> 00:19:09,481 FOR NEW AWARDS MEANING THOSE 450 00:19:09,548 --> 00:19:10,983 FUNDED ACCORDING TO PAY LINE OR 451 00:19:11,049 --> 00:19:12,918 SELECT PAY REMAINS THE SAME AND 452 00:19:12,985 --> 00:19:15,187 WE ARE NOT FUNDING IN REDUCED 453 00:19:15,254 --> 00:19:17,356 NUMBER OF AWARDS BUT ARE 454 00:19:17,422 --> 00:19:19,124 ALLOWING OR SETTING ASIDE MORE 455 00:19:19,191 --> 00:19:22,561 OF OUR FUNDS THROUGHOUT THE YEAR 456 00:19:22,628 --> 00:19:24,796 FOR OUR SELECT PAY PROCESS. 457 00:19:24,863 --> 00:19:27,799 THAT ALSO HAS THE BENEFIT FOR 458 00:19:27,866 --> 00:19:31,036 THOSE WHO -- THOSE APPLICATIONS 459 00:19:31,103 --> 00:19:32,871 THAT ARE ELIGIBLE FOR SELECT PAY 460 00:19:32,938 --> 00:19:35,207 FOR DECISIONS TO BE MADE EARLIER 461 00:19:35,274 --> 00:19:37,075 IN THE YEAR INSTEAD OF WAITING 462 00:19:37,142 --> 00:19:39,144 UNTIL END OF THE FISCAL YEAR 463 00:19:39,211 --> 00:19:41,947 THAT PRESENTS A HARDSHIP FOR 464 00:19:42,014 --> 00:19:43,982 INVESTIGATORS AND RECOGNIZE THAT 465 00:19:44,049 --> 00:19:45,484 IN CURRENT BUDGET LANDSCAPE, 466 00:19:45,551 --> 00:19:49,054 AMOUNT OF FUNDS AVAILABLE FOR 467 00:19:49,121 --> 00:19:50,656 GRANTS MAY NOT KEEP UP WITH 468 00:19:50,722 --> 00:19:51,790 INFLATION AND WITH REALITY WE 469 00:19:51,857 --> 00:19:54,192 ARE COMMITTED TO MAINTAINING 470 00:19:54,259 --> 00:19:56,795 STEADY NUMBER OF AWARDS EACH 471 00:19:56,862 --> 00:19:59,665 YEAR TO HELP PRESERVE AND 472 00:19:59,731 --> 00:20:00,666 STABILIZE RESEARCH WORKFORCE 473 00:20:00,732 --> 00:20:04,736 THAT IS A GOAL SHARED ACROSS THE 474 00:20:04,803 --> 00:20:04,937 NIH. 475 00:20:05,003 --> 00:20:08,273 NOW I WILL MOVE ON TO PERSONNEL 476 00:20:08,340 --> 00:20:11,810 CHANGES AT NIH AND NIAMS AND 477 00:20:11,877 --> 00:20:13,845 AFTER A NATIONWIDE SEARCH MONICA 478 00:20:13,912 --> 00:20:17,516 BER CONTINUE OELI NIH DIRECTOR 479 00:20:17,583 --> 00:20:20,185 SELECTED SEAN MOONEY AS DIRECTOR 480 00:20:20,252 --> 00:20:21,053 OF CENTER FOR INFORMATION 481 00:20:21,119 --> 00:20:22,888 TECHNOLOGY AND I HAVE SEEN HIM 482 00:20:22,955 --> 00:20:24,623 IN ACTION FOR A COUPLE MONTHS 483 00:20:24,690 --> 00:20:27,192 NOW AND SERVE ON COMMITTEES 484 00:20:27,259 --> 00:20:29,962 TOGETHER. HE IS FANTASTIC AND 485 00:20:30,028 --> 00:20:32,097 HIT THE GROUND RACING AND GIVING 486 00:20:32,164 --> 00:20:34,166 YOU MORE ABOUT HIS BACKGROUND HE 487 00:20:34,232 --> 00:20:36,802 JOINED NIH IN MARCH A FEW MONTHS 488 00:20:36,868 --> 00:20:40,939 AGO AND WAS PREVIOUSLY IN SOOE 489 00:20:41,006 --> 00:20:44,443 AT SERVING AS PROFESSOR OF BIO 490 00:20:44,509 --> 00:20:47,179 -- AND AS PART OF THAT ROLE, HE 491 00:20:47,245 --> 00:20:49,915 SERVED AS THE CHIEF RESEARCH 492 00:20:49,982 --> 00:20:51,984 INFORMATION OFFICER AND INTERIM 493 00:20:52,050 --> 00:20:53,619 DIRECTOR FOR UNIVERSITY OF 494 00:20:53,685 --> 00:20:55,654 WASHINGTON INSTITUTE FOR MEDICAL 495 00:20:55,721 --> 00:20:58,156 DATA SCIENCE AND WAS DIRECTOR 496 00:20:58,223 --> 00:21:01,159 FOR INFORMATICS FOR UNIVERSITY 497 00:21:01,226 --> 00:21:03,795 OF WASHINGTON INSTITUTE OF 498 00:21:03,862 --> 00:21:04,429 TRANSLATIONAL SCIENCES AND HAD 499 00:21:04,496 --> 00:21:06,698 LOTS OF ROLES AND PREVIOUS 500 00:21:06,765 --> 00:21:07,866 EARLIER TRAINING WAS IN 501 00:21:07,933 --> 00:21:10,202 CHEMISTRY AND INFORMATICS AND 502 00:21:10,268 --> 00:21:12,938 RESEARCH INTEREST FOCUSED ON 503 00:21:13,005 --> 00:21:16,708 LEVERAGING COMPUTATIONAL CYBER 504 00:21:16,775 --> 00:21:17,643 INFRASTRUCTURE IN DATA SCIENCE 505 00:21:17,709 --> 00:21:19,845 AVEND IS A FELLOW OF AMERICAN 506 00:21:19,911 --> 00:21:21,647 COLLEGE OF MEDICAL INFORMATICS 507 00:21:21,713 --> 00:21:23,782 EARNING BACHELORS IN 508 00:21:23,849 --> 00:21:25,217 BIOCHEMISTRY AND MOLECULAR 509 00:21:25,283 --> 00:21:27,653 BIOLOGY FROM THE UNIVERSITY OF 510 00:21:27,719 --> 00:21:31,056 WISCONSIN AND RECEIVED PHD IN 511 00:21:31,123 --> 00:21:33,025 PHARMACEUTICAL CHEMISTRY FROM 512 00:21:33,091 --> 00:21:35,260 USF AND AMERICAN CANCER SOCIETY 513 00:21:35,327 --> 00:21:37,696 JOHN HOPKINS FELLOW AT STANFORD 514 00:21:37,763 --> 00:21:39,731 IN DEPARTMENT OF GENETICS AND 515 00:21:39,798 --> 00:21:42,501 MEDICAL INFORMATICS AND HIGHLY 516 00:21:42,567 --> 00:21:44,002 QUALIFIED AND WILL BE A 517 00:21:44,069 --> 00:21:46,772 FANTASTIC ADDITION TO THE 518 00:21:46,838 --> 00:21:47,072 COMMUNITY. 519 00:21:47,139 --> 00:21:52,244 NIH ALSO WELCOMES DR. KATHLEEN 520 00:21:52,310 --> 00:21:55,147 NOOUZAL AS DIRECTOR OF FOGARTY 521 00:21:55,213 --> 00:21:57,082 INTERNATIONAL CENTER AND IN ROLE 522 00:21:57,149 --> 00:21:59,918 SERVES AS NIH ASSOCIATE DIRECTOR 523 00:21:59,985 --> 00:22:02,788 FOR NIH RESEARCH AND IS HIGHLY 524 00:22:02,854 --> 00:22:04,790 QUALIFIED AND FIRST WOMAN TO 525 00:22:04,856 --> 00:22:06,558 HOLD PERMANENT DIRECTORSHIPS 526 00:22:06,625 --> 00:22:09,728 SINCE CENTER'S FOUNDING BACK IN 527 00:22:09,795 --> 00:22:11,763 1968 AND PRIOR TO JOINING NIH 528 00:22:11,830 --> 00:22:14,900 WAS ENDOWED PROFESSOR IN 529 00:22:14,966 --> 00:22:16,134 VAXINOLOGY AND DIRECTOR FOR 530 00:22:16,201 --> 00:22:17,936 CENTER FOR VACCINE DEVELOPMENT 531 00:22:18,003 --> 00:22:20,205 AND GLOBAL HEALTH AND WAS CHIEF 532 00:22:20,272 --> 00:22:23,108 OF DIVISION OF GEOGRAPHIC 533 00:22:23,175 --> 00:22:26,445 MEDICINE AT UNIVERSITY OF 534 00:22:26,511 --> 00:22:29,114 MARYLAND SCHOOL OF MEDICINE IN 535 00:22:29,181 --> 00:22:31,083 BALTIMORE AND RECEIVES 536 00:22:31,149 --> 00:22:33,018 UNDERGRADUATE DEGREE AT 537 00:22:33,085 --> 00:22:35,220 UNIVERSITY OF MARYLAND AT 538 00:22:35,287 --> 00:22:37,656 COLLEGE PARK AND SHE COMPLETED 539 00:22:37,723 --> 00:22:40,659 INTERNSHIP AND RESIDENCY AT 540 00:22:40,726 --> 00:22:43,061 VANDERBILT AND COMPLETED 541 00:22:43,128 --> 00:22:44,129 FELLOWSHIP IN INFECTIOUS 542 00:22:44,196 --> 00:22:48,767 DISEASES AND EARNED MASTERS OF 543 00:22:48,834 --> 00:22:49,367 PUBLIC HEALTH AND MEMBER OF 544 00:22:49,434 --> 00:22:52,671 NATIONAL ACADEMY OF MEDICINE AND 545 00:22:52,738 --> 00:22:55,540 SHE PREVIOUSLY SERVED ON CDC'S 546 00:22:55,607 --> 00:22:57,142 ADVISORY COMMITTEE ON 547 00:22:57,209 --> 00:22:58,977 IMMUNIZATION PRACTICES. 548 00:22:59,044 --> 00:23:00,512 ALSO HIGHLY QUALIFIED FOR THIS 549 00:23:00,579 --> 00:23:01,646 VERY IMPORTANT ROLE. 550 00:23:01,713 --> 00:23:08,253 NOW, WHERE ARE THE TISSUES? 551 00:23:08,320 --> 00:23:10,555 HERE AT NIAMS BOB CARTER 552 00:23:10,622 --> 00:23:12,457 ANNOUNCED INTENTION TO RETIRE 553 00:23:12,524 --> 00:23:13,859 FROM GOVERNMENT SERVICE AT END 554 00:23:13,925 --> 00:23:15,293 OF CALENDAR YEAR. 555 00:23:15,360 --> 00:23:17,129 SO FOR THOSE WHO HAVE NOT BEEN 556 00:23:17,195 --> 00:23:23,135 PART OF OUR COMMUNITY, BEFORE 557 00:23:23,201 --> 00:23:32,711 BOB JOINED, BOB JOINED NIAMS 558 00:23:32,778 --> 00:23:35,046 2008 AND STEPPED IN AS ACTING 559 00:23:35,113 --> 00:23:37,282 DIRECTOR FOLLOWING PASSING IN 560 00:23:37,349 --> 00:23:39,417 2018 AND JOINED INSTITUTE IN 561 00:23:39,484 --> 00:23:43,054 2021 AND BOB HAS MADE SURE THAT 562 00:23:43,121 --> 00:23:44,289 NIAMS INTEREST HAS BEEN 563 00:23:44,356 --> 00:23:47,125 PROMINENTLY FEATURED IN SEVERAL 564 00:23:47,192 --> 00:23:49,895 TRANS NIH PARTNERSHIPS AND 565 00:23:49,961 --> 00:23:51,429 PRESENCE IN WELL-BEYOND WHAT 566 00:23:51,496 --> 00:23:53,365 WOULD BE EXPECTED BASED ON 567 00:23:53,431 --> 00:23:54,933 RELATIVELY SMALL SIZE OF THE 568 00:23:55,000 --> 00:23:56,868 INSTITUTE AND EVENT MAJOR 569 00:23:56,935 --> 00:23:59,070 IMPORTANT PLAYERS AND LEADERS IN 570 00:23:59,137 --> 00:24:00,739 ACCELERATING MEDICINES 571 00:24:00,806 --> 00:24:04,609 PARTNERSHIP PROGRAM AND BACK 572 00:24:04,676 --> 00:24:06,611 PAIN CONSORT SHUIUM AND BACK 573 00:24:06,678 --> 00:24:09,648 PATH AND REDUCE PAIN OR REJOINED 574 00:24:09,714 --> 00:24:10,982 CONSORTIUM AND BOTH PROGRAMS ARE 575 00:24:11,049 --> 00:24:15,053 PART OF NIH'S HEEL INITIATIVES 576 00:24:15,120 --> 00:24:18,290 AND ALLOWS TO LEVERAGE RESOURCES 577 00:24:18,356 --> 00:24:20,392 DON'T COME OUT OF OUR BUDGET AND 578 00:24:20,458 --> 00:24:22,227 IS IMPORTANT AND JOINING 579 00:24:22,294 --> 00:24:23,628 INSTITUTE AS A TOTAL NEW BY TO 580 00:24:23,695 --> 00:24:26,431 THE NIH AND CONSISTENT 581 00:24:26,498 --> 00:24:29,935 LEADERSHIP ON ALL THESE FRONTS. 582 00:24:30,001 --> 00:24:38,243 WE WILL BE SORRY TO SEE HIM GO 583 00:24:38,310 --> 00:24:39,744 AND COMMITTED TO CONTINUE IN 584 00:24:39,811 --> 00:24:41,813 CERTAIN AREAS FOLLOWING 585 00:24:41,880 --> 00:24:45,784 RETIREMENT AND THANKS FOR YOUR 586 00:24:45,851 --> 00:24:52,457 SERVICE, BOB. 587 00:24:52,524 --> 00:24:55,961 YOU WILL SPEAK TO THE GROUP 588 00:24:56,027 --> 00:24:57,295 LATER TODAY BUT IF YOU WANT TO 589 00:24:57,362 --> 00:24:59,798 SHARE COMMENTS. 590 00:24:59,865 --> 00:25:02,167 MOVING ON SOME REALLY GREAT NEWS 591 00:25:02,234 --> 00:25:03,201 NOW. 592 00:25:03,268 --> 00:25:06,471 FIRST OF ALL, MOST KNOW DR. 593 00:25:06,538 --> 00:25:07,272 [INDISCERNIBLE] ANNOUNCED 594 00:25:07,339 --> 00:25:09,741 INTENTION TO STEP DOWN AS 595 00:25:09,808 --> 00:25:10,475 SCIENTIFIC DIRECTOR LAST YEAR 596 00:25:10,542 --> 00:25:12,711 AND CONTINUED IN REMAINING 597 00:25:12,777 --> 00:25:14,779 POSITION CONDUCTING NATIONWIDE 598 00:25:14,846 --> 00:25:16,681 SEARCH FOR THIS IMPORTANT 599 00:25:16,748 --> 00:25:19,050 LEADERSHIP ROLE AND REMAIN 600 00:25:19,117 --> 00:25:20,352 APPRECIATIVE OF JOHN'S ONGOING 601 00:25:20,418 --> 00:25:21,853 LEADERSHIP AND KNOW HE LOOKS 602 00:25:21,920 --> 00:25:24,222 FORWARD TO SPENDING TIME 603 00:25:24,289 --> 00:25:26,691 PROMOTING DIVERSITY AMONG NIAMS 604 00:25:26,758 --> 00:25:28,560 WORKFORCE AND COMMITTED MENTOR 605 00:25:28,627 --> 00:25:32,330 MAKING DISCOVERIES IN VERY BUSY 606 00:25:32,397 --> 00:25:34,733 PRODUCTIVE LABS IN HIS GREAT 607 00:25:34,799 --> 00:25:36,434 PASSIONS AND MENTIONING DURING 608 00:25:36,501 --> 00:25:39,204 LAST ADVISORY COUNCIL WE 609 00:25:39,271 --> 00:25:41,139 RECEIVED A ROBUST RESPONSE TO 610 00:25:41,206 --> 00:25:42,941 POSITION ANNOUNCEMENT AND 611 00:25:43,008 --> 00:25:45,443 ALTHOUGH WE WILL CONTINUE TO 612 00:25:45,510 --> 00:25:46,311 ACCEPT APPLICATIONS UNTIL 613 00:25:46,378 --> 00:25:48,747 POSITION IS FILLED WE IDENTIFIED 614 00:25:48,813 --> 00:25:50,982 SEVERAL OUTSTANDING CANDIDATES 615 00:25:51,049 --> 00:25:53,718 AND NOW INVITED TOP CANDIDATES 616 00:25:53,785 --> 00:25:55,820 TO COME AND VISIT NIAMS AND GIVE 617 00:25:55,887 --> 00:25:57,689 PRESENTATIONS AND MEET WITH 618 00:25:57,756 --> 00:25:59,925 PROGRAM MEMBERS AND THESE VISITS 619 00:25:59,991 --> 00:26:03,194 BEGIN IN MID JUNE AND GO ABOUT 620 00:26:03,261 --> 00:26:04,596 MID-JULY. I WILL KEEP YOU 621 00:26:04,663 --> 00:26:05,997 INFORMED ABOUT THE PROGRESS AND 622 00:26:06,064 --> 00:26:09,834 WE ARE REALLY EXCITED HOW THE 623 00:26:09,901 --> 00:26:10,869 PROCESS IS GOING. 624 00:26:10,936 --> 00:26:13,204 SO MOVING ON TO EXTRAMURAL 625 00:26:13,271 --> 00:26:16,174 RESEARCH PROGRAMS, I'M EXCITED 626 00:26:16,241 --> 00:26:20,979 TO INTRODUCE TWO NEW PROGRAM 627 00:26:21,046 --> 00:26:23,448 DIRECTORS JESS EPEE WHO JOINED 628 00:26:23,515 --> 00:26:27,919 FROM LDI AND SERVED AS CHAIR OF 629 00:26:27,986 --> 00:26:30,789 -- OVER 10 YEARS. 630 00:26:30,855 --> 00:26:33,792 INTERIM NHLBI TRAINING DIRECTOR 631 00:26:33,858 --> 00:26:37,729 OVER 2 YEARS PRIOR TO JOINING 632 00:26:37,796 --> 00:26:41,299 NIH BACK IN 2010, DR. FIDUCHI OR 633 00:26:41,366 --> 00:26:45,236 WHEN HE JOINED NIH BACK IN 2020, 634 00:26:45,303 --> 00:26:47,706 INITIAL ROLE WAS AS A SCIENTIFIC 635 00:26:47,772 --> 00:26:51,176 REVIEW OFFICER WITHIN CLINICAL 636 00:26:51,242 --> 00:26:55,714 STUDIES AND TRAINING BRANCH IN 637 00:26:55,780 --> 00:26:58,817 LBI AND SPANNING -- PARTICULAR 638 00:26:58,883 --> 00:27:03,621 FOCUS ON THE K99RO GRANT 639 00:27:03,688 --> 00:27:04,589 APPLICATIONS. 640 00:27:04,656 --> 00:27:07,192 OBTAINED PHD IN BIOLOGY AND 641 00:27:07,258 --> 00:27:09,794 MEDICAL BIOCHEMISTRY FOR 642 00:27:09,861 --> 00:27:12,931 UNIVERSITIES IN ITALY AND DURING 643 00:27:12,998 --> 00:27:19,004 POST DOC STUDIES ISOFORMS OF 644 00:27:19,070 --> 00:27:22,073 EXTRA CELLULAR LABORATORIES AT 645 00:27:22,140 --> 00:27:23,942 RIF KIN NEW YORK SCHOOL OF 646 00:27:24,009 --> 00:27:25,944 MEDICINE AND PROFESSOR AT SAME 647 00:27:26,011 --> 00:27:29,014 INSTITUTION INVESTIGATED COMPLEX 648 00:27:29,080 --> 00:27:32,684 INTERPLAY -- INFLAMMATORY PROET 649 00:27:32,751 --> 00:27:37,856 TEE AZS AND NIH FUNDED WORK 650 00:27:37,922 --> 00:27:40,325 HIGHLIGHTS ROLE OF THROMBBANT 651 00:27:40,392 --> 00:27:44,095 AND MITOGIN ACTIVATED KINASES 652 00:27:44,162 --> 00:27:47,132 AND RESULTED IN NUMEROUS PEER 653 00:27:47,198 --> 00:27:48,533 REVIEW PUBLICATIONS AND PATENT 654 00:27:48,600 --> 00:27:52,237 AND AT NIAMS DR. PENN TUCHI WILL 655 00:27:52,303 --> 00:27:54,706 HELP WITH THE ORTHOPEDICS 656 00:27:54,773 --> 00:27:56,875 PORTFOLIO AND HIGHLY QUALIFIED. 657 00:27:56,941 --> 00:27:59,744 ALSO, I'M DELIGHTED TO INTRODUCE 658 00:27:59,811 --> 00:28:03,281 ISA VINCENT JOINING FROM NIGMS 659 00:28:03,348 --> 00:28:05,817 AND HE SERVED AS SCIENTIFIC 660 00:28:05,884 --> 00:28:09,120 REVIEW OFFICER IN CHARGE OF 661 00:28:09,187 --> 00:28:11,756 STANDING REVIEW PANEL TWDA WHICH 662 00:28:11,823 --> 00:28:14,692 REVIEWED A LION'S SHARE OF 663 00:28:14,759 --> 00:28:16,828 PREDOCTORAL T32 APPOINTMENTS 664 00:28:16,895 --> 00:28:19,798 LABS AWARDED BY NIH AND BEGAN 665 00:28:19,864 --> 00:28:22,133 SERVICE AS HEALTH SCIENTIST AS 666 00:28:22,200 --> 00:28:23,835 OFFICE OF DISEASE PREVENTION AND 667 00:28:23,902 --> 00:28:26,805 PRIOR TO JOINING NIH WAS AT 668 00:28:26,871 --> 00:28:29,741 UNIVERSITY OF VIRGINIA AND POST 669 00:28:29,808 --> 00:28:32,343 DOCTORAL RESEARCH FOCUSED ON 670 00:28:32,410 --> 00:28:34,546 FIBROSIS AND REPAIR AND 671 00:28:34,612 --> 00:28:37,482 SIGNALING IN LAB OF DR. MARK 672 00:28:37,549 --> 00:28:39,951 OPEWSA AND DR. VINCENT WILL 673 00:28:40,018 --> 00:28:41,519 OVERSEE AND COORDINATE NIAMS 674 00:28:41,586 --> 00:28:43,521 TRAINING AND PORTFOLIO WILL 675 00:28:43,588 --> 00:28:46,958 INCLUDE T32S AND F AWARDS AND 676 00:28:47,025 --> 00:28:50,428 K99 PORTION OF THE PARENT AND 677 00:28:50,495 --> 00:28:53,198 MOSAIC K99R0 AWARDS IN ADDITION 678 00:28:53,264 --> 00:28:55,200 TO COORDINATING ADMINISTRATION 679 00:28:55,266 --> 00:28:58,369 OF K AWARDS AND HAS BEEN 680 00:28:58,436 --> 00:28:59,037 FABULOUS INTERACTING WITH BOTH 681 00:28:59,104 --> 00:29:00,672 OF THESE PEOPLE AND REALLY 682 00:29:00,738 --> 00:29:02,807 EXCITED TO HAVE YOU ON BOARD. 683 00:29:02,874 --> 00:29:10,782 WE ARE ALSO WELCOMING DR. SHRONG 684 00:29:10,849 --> 00:29:14,719 FANG AS NEW SCIENTIFIC DIRECTOR 685 00:29:14,786 --> 00:29:16,387 AND HE STUDIED REGULATION OF 686 00:29:16,454 --> 00:29:18,389 IMMUNE RESPONSE IN ALLERGIC LUNG 687 00:29:18,456 --> 00:29:20,592 IN MOUSE MODELS AND BEFORE 688 00:29:20,658 --> 00:29:23,428 JOINING NIEHS WORKED AS A 689 00:29:23,495 --> 00:29:25,430 RESEARCH ASSOCIUSASE AND LATER 690 00:29:25,497 --> 00:29:28,066 PROFESSOR AT UNIVERSITY OF 691 00:29:28,133 --> 00:29:29,934 MARYLAND SCHOOL OF MEDICINE AND 692 00:29:30,001 --> 00:29:33,204 FOCUSED ON ROLE OF -- HOST 693 00:29:33,271 --> 00:29:34,339 PATHOGEN INTERACTIONS AND 694 00:29:34,405 --> 00:29:35,974 MUCOSAL IMMUNE RESPONSES AS WELL 695 00:29:36,040 --> 00:29:37,509 AS VACCINE DEVELOPMENT. 696 00:29:37,575 --> 00:29:40,512 WELCOME TO ALL OF YOU. 697 00:29:40,578 --> 00:29:42,914 NEXT I WOULD LIKE TO HIGHLIGHT 698 00:29:42,981 --> 00:29:45,183 NIH AND NIAMS ACTIVITIES MIGHT 699 00:29:45,250 --> 00:29:47,752 BE OF INTEREST TO YOU AND 700 00:29:47,819 --> 00:29:49,687 BROADER COMMUNITY AND MARCH 18TH 701 00:29:49,754 --> 00:29:53,358 I WAS HONORED TO JOIN NIH 702 00:29:53,424 --> 00:29:56,127 DIRECTOR MONICA BERTAGNOLLI AND 703 00:29:56,194 --> 00:30:00,298 NIH LEADERS AT WHITE HOUSE AND 704 00:30:00,365 --> 00:30:01,866 PRESIDENT JOE BIDEN SIGNED 705 00:30:01,933 --> 00:30:03,201 EXECUTIVE ORDER ANNOUNCING 706 00:30:03,268 --> 00:30:04,969 HEALTH RESEARCH AND INNOVATION 707 00:30:05,036 --> 00:30:07,505 AND ORDER ASPIRES TO INTEGRATE 708 00:30:07,572 --> 00:30:10,441 WOMEN'S HEALTH ACROSS FEDERAL 709 00:30:10,508 --> 00:30:11,943 RESEARCH PORTFOLIO AND 710 00:30:12,010 --> 00:30:14,379 PRIORITIZE INVESTMENTS IN 711 00:30:14,445 --> 00:30:17,115 WOMEN'S HEALTH RESEARCH 712 00:30:17,182 --> 00:30:19,784 GALVANIZES RESEARCH ON WOMEN'S 713 00:30:19,851 --> 00:30:21,886 MIDLIFE HEALTH AND HELP ASSESS 714 00:30:21,953 --> 00:30:25,657 UNMET NEEDS TO SUPPORT WOMEN'S 715 00:30:25,723 --> 00:30:27,125 HEALTH RESEARCH. 716 00:30:27,192 --> 00:30:29,794 SO WOMEN'S HEALTH IS AN ISSUE OF 717 00:30:29,861 --> 00:30:32,030 GREAT CONGRESSIONAL INTEREST AND 718 00:30:32,096 --> 00:30:36,401 ON MAY SECOND, SENATORS LISA AND 719 00:30:36,467 --> 00:30:39,470 PATTY MURRAY AND TAMMY BALDWIN 720 00:30:39,537 --> 00:30:46,211 SUSAN COLLINS AMY CLOEB ASSURE 721 00:30:46,277 --> 00:30:47,779 INTRODUCED BIPARTISAN ADVANCING 722 00:30:47,845 --> 00:30:50,114 MENOPAUSE CARE AND MIDLIFE 723 00:30:50,181 --> 00:30:51,983 WOMEN'S HEALTH ACT TO BOOST 724 00:30:52,050 --> 00:30:54,485 RESEARCH ON MENOPAUSE AND 725 00:30:54,552 --> 00:30:57,789 COORDINATE FEDERAL GOVERNMENT'S 726 00:30:57,855 --> 00:31:01,226 EXISTING PROGRAMS RELATED TO 727 00:31:01,292 --> 00:31:02,927 MIDLIFE WOMEN'S HEALTH BILL THAT 728 00:31:02,994 --> 00:31:06,097 IS AUTHORIZED FOR 5 YEARS AIMS 729 00:31:06,164 --> 00:31:08,299 TO STRENGTHEN AND EXPAND FEDERAL 730 00:31:08,366 --> 00:31:10,201 RESEARCH ON MENOPAUSE HEALTH 731 00:31:10,268 --> 00:31:12,237 CARE WORKFORCE TRAINING 732 00:31:12,303 --> 00:31:13,838 AWARENESS EDUCATION EFFORTS AND 733 00:31:13,905 --> 00:31:16,241 PUBLIC HEALTH PROMOTION AND 734 00:31:16,307 --> 00:31:18,443 PREVENTION TO ADDRESS MENOPAUSE 735 00:31:18,509 --> 00:31:21,613 AND WOMEN'S MIDLIFE HEALTH 736 00:31:21,679 --> 00:31:22,213 ISSUES. 737 00:31:22,280 --> 00:31:23,915 RESEARCH ON WOMEN'S HEALTH HAS 738 00:31:23,982 --> 00:31:26,384 ALWAYS BEEN A FOCUS ON THE NIH. 739 00:31:26,451 --> 00:31:29,220 TWO WEEKS AGO NIH DIRECTOR 740 00:31:29,287 --> 00:31:30,922 MONICA SHARED HER VISION FOR 741 00:31:30,989 --> 00:31:32,890 FUTURE OF RESEARCH ON WOMEN'S 742 00:31:32,957 --> 00:31:35,893 HEALTH AND LAUNCHED NIH-WIDE 743 00:31:35,960 --> 00:31:37,762 STRATEGIC PLAN FOR RESEARCH ON 744 00:31:37,829 --> 00:31:40,832 HEALTH OF WOMEN 2024 TO 2028 AND 745 00:31:40,898 --> 00:31:43,101 PLAN SERVES AS A ROAD MAP TO 746 00:31:43,167 --> 00:31:45,470 GUIDE AND INFORM NIH SUPPORTED 747 00:31:45,536 --> 00:31:48,606 RESEARCH ON DISEASES AND HEALTH 748 00:31:48,673 --> 00:31:50,541 CONDITIONS THAT UNIQUELY EFFECT 749 00:31:50,608 --> 00:31:53,144 WOMEN AND NIH AND OFFICE OF 750 00:31:53,211 --> 00:31:54,679 RESEARCH AND WOMEN'S HEALTH 751 00:31:54,746 --> 00:31:57,081 EXTEND BEYOND THE LABORATORY 752 00:31:57,148 --> 00:31:58,383 ACTIVELY SEEKING TO EMPOWER 753 00:31:58,449 --> 00:31:59,851 WOMEN AND GIRLS ADDRESSING SEX 754 00:31:59,917 --> 00:32:01,886 AND GENDER DISPARITIES AND 755 00:32:01,953 --> 00:32:03,721 HEALTH OUTCOMES PROMOTING 756 00:32:03,788 --> 00:32:06,724 RESEARCH INCLUDING WOMEN ACROSS 757 00:32:06,791 --> 00:32:08,926 THE LIFE FORCE AND SUPPORTING 758 00:32:08,993 --> 00:32:13,231 WOMEN IN BIOMEDICAL CAREERS. 759 00:32:13,298 --> 00:32:15,066 NOW SWITCHING TO CONGRESSIONAL 760 00:32:15,133 --> 00:32:16,668 INTERACTION I WAS INVITED TO 761 00:32:16,734 --> 00:32:18,736 PARTICIPATE IN A BRIEFING RELATE 762 00:32:18,803 --> 00:32:20,305 THE TO SKIN DISEASE RESEARCH 763 00:32:20,371 --> 00:32:22,573 WITH CONGRESSIONAL MEMBERS AND 764 00:32:22,640 --> 00:32:24,676 STAFF AS PART OF THE FIELD DAY 765 00:32:24,742 --> 00:32:26,477 ACTIVITIES ORGANIZED BY 766 00:32:26,544 --> 00:32:29,080 COALITION OF SKIN DISEASES IF I 767 00:32:29,147 --> 00:32:29,814 RECALL CORRECTLY THEY HAD 768 00:32:29,881 --> 00:32:33,017 SOMETHING LIKE 500 MEETINGS 769 00:32:33,084 --> 00:32:34,085 SCHEDULED WITH VARIOUS STAFF AND 770 00:32:34,152 --> 00:32:36,020 WAS IMPRESSIVE AND WE ARE 771 00:32:36,087 --> 00:32:37,622 GRATEFUL TO HAVE OPPORTUNITIES 772 00:32:37,689 --> 00:32:38,890 LIKE THIS TO HIGHLIGHT 773 00:32:38,956 --> 00:32:42,593 OUTSTANDING WORK WE SUPPORT AND 774 00:32:42,660 --> 00:32:44,495 EDUCATE CONGRESS ABOUT NIAMS MAY 775 00:32:44,562 --> 00:32:47,699 IS LUPUS AWARENESS MONTH AND 776 00:32:47,765 --> 00:32:49,400 COMMUNITY ACTIVE IN RAISING 777 00:32:49,467 --> 00:32:50,668 AWARENESS ABOUT THIS CHRONIC 778 00:32:50,735 --> 00:32:53,671 DISEASE AND DURING 2024 NATIONAL 779 00:32:53,738 --> 00:32:57,008 LUPUS ADVOCACY SUMMIT ORGANIZED 780 00:32:57,075 --> 00:33:01,346 BY LUPUS FOUNDATION SUMMIT IN 781 00:33:01,412 --> 00:33:03,781 AMERICA -- UNDERWAY WITHIN THE 782 00:33:03,848 --> 00:33:04,849 FEDERAL GOVERNMENT ON LUPUS 783 00:33:04,916 --> 00:33:06,217 RESEARCH AND EDUCATION AND THIS 784 00:33:06,284 --> 00:33:07,919 IS THE FIRST TIME I ATTENDED 785 00:33:07,985 --> 00:33:10,488 THIS EVENT AND WAS IMPRESSED AS 786 00:33:10,555 --> 00:33:11,989 A PARTICIPATE IN THESE EVENTS 787 00:33:12,056 --> 00:33:13,825 AND MEETINGS WE HAD WITH 788 00:33:13,891 --> 00:33:14,959 ORGANIZATIONS INTERESTED IN 789 00:33:15,026 --> 00:33:18,663 RESEARCH RELATED TO BONES JOINTS 790 00:33:18,730 --> 00:33:20,331 MUSCLES AND SKIN I'M IMPRESSED 791 00:33:20,398 --> 00:33:21,799 WITH HOW MUCH MISSION IS DRIVEN 792 00:33:21,866 --> 00:33:24,402 WITH MEANINGFUL INTERACTIONS 793 00:33:24,469 --> 00:33:26,270 WITH PATIENT ADVOCACY AND 794 00:33:26,337 --> 00:33:28,206 COMMUNITY GROUPS AND PATIENTS 795 00:33:28,272 --> 00:33:29,140 AND CAREGIVERS ARE AT HEART OF 796 00:33:29,207 --> 00:33:32,009 WHY WE DO WHAT WE DO AND 797 00:33:32,076 --> 00:33:34,412 ENGAGEMENT WITH PATIENT ADVOCACY 798 00:33:34,479 --> 00:33:36,114 AND COMMUNITY GROUPS IS CORE TO 799 00:33:36,180 --> 00:33:38,249 MISSION AND NIAMS DIRECTOR 800 00:33:38,316 --> 00:33:40,351 COMMITTED TO ENSURING VOICES ARE 801 00:33:40,418 --> 00:33:41,919 ACKNOWLEDGED AND VITALLY 802 00:33:41,986 --> 00:33:43,388 IMPORTANT FEEDBACK IS 803 00:33:43,454 --> 00:33:45,223 INCORPORATED INTO INSTITUTE'S 804 00:33:45,289 --> 00:33:47,125 ACTIVITIES AND DURING TODAY'S 805 00:33:47,191 --> 00:33:49,527 MEETING AND NEXT FEW COUNCIL 806 00:33:49,594 --> 00:33:51,462 MEETINGS WE WILL FOCUS ON 807 00:33:51,529 --> 00:33:52,797 PATIENT AND COMMUNITY ENGAGEMENT 808 00:33:52,864 --> 00:33:54,565 THAT IS CRITICALLY IMPORTANT AND 809 00:33:54,632 --> 00:33:57,068 TIMELY AND INVITED PATIENT 810 00:33:57,135 --> 00:33:59,137 REPRESENTATIVES FROM NIAMS 811 00:33:59,203 --> 00:34:00,705 MISSIONARIES TO SPEAK AT TODAY'S 812 00:34:00,772 --> 00:34:02,874 MEETING AND LOOK FORWARD TO 813 00:34:02,940 --> 00:34:04,008 HEARING FROM THEM. 814 00:34:04,075 --> 00:34:06,144 I WILL NOW SHARE UPDATES ON 815 00:34:06,210 --> 00:34:07,745 PROGRAMS AND INITIATIVES THAT 816 00:34:07,812 --> 00:34:10,581 ARE OF INTEREST TO NIAMS AND 817 00:34:10,648 --> 00:34:11,949 PREVIOUS COUNCIL MEETINGS I TOLD 818 00:34:12,016 --> 00:34:16,187 YOU ABOUT EXACT THAT STANDS FOR 819 00:34:16,254 --> 00:34:18,756 EXPOSOME AND AUTO IMMUNE DISEASE 820 00:34:18,823 --> 00:34:20,591 COORDINATING COLLABORATING TEAMS 821 00:34:20,658 --> 00:34:22,927 AND TURNED OUT TO BE INAUGURAL 822 00:34:22,994 --> 00:34:24,896 PROGRAM OF OFFICE OF AUTO IMMUNE 823 00:34:24,962 --> 00:34:27,031 DISEASE RESEARCH AND IN MARCH 824 00:34:27,098 --> 00:34:29,467 NIH MADE 6 AWARDS UNDER PROGRAMS 825 00:34:29,534 --> 00:34:32,370 FIRST STAGE OF INITIATIVE THAT 826 00:34:32,437 --> 00:34:34,439 IS CALLED EXACT PLAN WITH PLAN 827 00:34:34,505 --> 00:34:37,308 STANDING FOR PLANNING AWARD R21 828 00:34:37,375 --> 00:34:38,075 PLANNING AWARDS AND DISEASE 829 00:34:38,142 --> 00:34:40,611 FOCUS OF SOME AWARDS INCLUDE 830 00:34:40,678 --> 00:34:43,848 TOPICS WITHIN NIAMS MISSION SUCH 831 00:34:43,915 --> 00:34:46,784 AS HUMETOID ARTHRITIS LUPUS AND 832 00:34:46,851 --> 00:34:48,886 SORATIC DISEASE AND HAD FIRST 833 00:34:48,953 --> 00:34:50,188 ANNUAL SUMMIT TO TALK ABOUT 834 00:34:50,254 --> 00:34:53,124 OPPORTUNITIES AND CHALLENGES IN 835 00:34:53,191 --> 00:34:55,626 THIS AREA EARLIER THIS MONTH. 836 00:34:55,693 --> 00:35:00,131 NOW, AS MANY OF YOU MAY RECALL 837 00:35:00,198 --> 00:35:04,202 NITRO WHICH STANDS FOR NOVEL 838 00:35:04,268 --> 00:35:05,736 INNOVATIONS TISSUE REGENERATION 839 00:35:05,803 --> 00:35:08,172 AND OSTEOARTHRITIS WAS FIRST 840 00:35:08,239 --> 00:35:11,108 ARPA H PROGRAM TO BE LAUNCHED 841 00:35:11,175 --> 00:35:12,643 AND EXPRESSING THANKS TO NIAM 842 00:35:12,710 --> 00:35:15,379 STAFF THAT PROVIDED SUBSTANTIAL 843 00:35:15,446 --> 00:35:17,715 TECHNICAL ASSISTANCE TO ARPA H 844 00:35:17,782 --> 00:35:20,017 AS THEY DEVELOPED THIS PROGRAM 845 00:35:20,084 --> 00:35:22,753 AND PROGRAM SUBSEQUENTLY 846 00:35:22,820 --> 00:35:24,922 SELECTED 5 NITRO PERFORMER TEAMS 847 00:35:24,989 --> 00:35:26,524 DEVELOPING AND LEVERAGING 848 00:35:26,591 --> 00:35:29,894 INNOVATIVE FORMS OF REGENERATIVE 849 00:35:29,961 --> 00:35:33,764 MEDICINE AND THERAPEUTICS THAT 850 00:35:33,831 --> 00:35:35,433 FULLY REPAIR DAMAGED JOINTS AND 851 00:35:35,500 --> 00:35:37,768 EXCITING GOALS AND THESE 852 00:35:37,835 --> 00:35:39,170 PERFORMER TEAMS INCLUDE A TEAM 853 00:35:39,237 --> 00:35:41,739 LED BY DUKE UNIVERSITY FOCUSING 854 00:35:41,806 --> 00:35:43,908 ON TIME RELEASE OF THERAPIES AND 855 00:35:43,975 --> 00:35:47,178 TEAM LED AT WASHINGTON 856 00:35:47,245 --> 00:35:49,580 UNIVERSITY AT ST. LOUIS FOCUSING 857 00:35:49,647 --> 00:35:51,182 ON SMART CELL THERAPY AND TEAM 858 00:35:51,249 --> 00:35:54,252 AT UNIVERSITY OF COLORADO 859 00:35:54,318 --> 00:35:57,555 BOULDER THAT FOCUSES ON 860 00:35:57,622 --> 00:35:58,823 ENGINEERED MATERIALS AND LED BY 861 00:35:58,890 --> 00:36:03,194 FOCUSING ON INTEGRATED TOTAL 862 00:36:03,261 --> 00:36:05,162 KNEE IMPLANTS AND TEAM BY CASE 863 00:36:05,229 --> 00:36:07,932 WESTERN UNIVERSITY FOCUSING ON 864 00:36:07,999 --> 00:36:10,801 MODULAR TOTAL KNEE IMPLANTS AND 865 00:36:10,868 --> 00:36:13,638 PROVIDE TECHNICAL ASSISTANCE TO 866 00:36:13,704 --> 00:36:15,439 NEW PROGRAM AS NEEDED AND 867 00:36:15,506 --> 00:36:17,008 LOOKING FORWARD TO ACHIEVEMENTS 868 00:36:17,074 --> 00:36:18,910 AND MANY THANKS TO OTHERS 869 00:36:18,976 --> 00:36:23,214 STAYING ENGAGED WITH THIS 870 00:36:23,281 --> 00:36:25,249 INITIATIVE. 871 00:36:25,316 --> 00:36:27,785 NIH RECOGNIZES DRAMATIC LEAPS 872 00:36:27,852 --> 00:36:31,956 AND TECHNOLOGIES THAT ALLOW 873 00:36:32,023 --> 00:36:34,859 RESEARCHERS TO USE COMPLIMENTARY 874 00:36:34,926 --> 00:36:38,996 AND THESE NEW APPROACH 875 00:36:39,063 --> 00:36:40,665 METHODOLOGIES THAT ARE BEING 876 00:36:40,731 --> 00:36:42,934 CALLED NAMS THAT ARE INCLUDING 877 00:36:43,000 --> 00:36:46,103 COMPUTATIONAL MODELING AND 878 00:36:46,170 --> 00:36:47,138 PREDICTIVE TECHNOLOGIES CELL 879 00:36:47,204 --> 00:36:49,874 ASSAYS AND CELL BASED CULTURE 880 00:36:49,941 --> 00:36:53,911 METHODS AND CELL BASED CULTURE 881 00:36:53,978 --> 00:36:56,781 MODELS HOLD TREMENDOUS WHEN 882 00:36:56,847 --> 00:36:58,883 APPLIED TO SCIENTIFIC INQUIRY 883 00:36:58,950 --> 00:37:01,385 AND COMPLEMENT OF ANIMAL 884 00:37:01,452 --> 00:37:03,487 RESEARCH AND EXPERIMENTATION IS 885 00:37:03,554 --> 00:37:06,490 NEW NIH COMMON FUND PROGRAM 886 00:37:06,557 --> 00:37:07,758 AIMING TOAC CELL RATE 887 00:37:07,825 --> 00:37:09,026 DEVELOPMENT AND STANDARDIZATION 888 00:37:09,093 --> 00:37:10,928 AND VALIDATION AND USE OF NEW 889 00:37:10,995 --> 00:37:14,065 METHODS AND APPROACHES THAT WILL 890 00:37:14,131 --> 00:37:16,734 ACCURATELY MODEL HUMAN BIOLOGY 891 00:37:16,801 --> 00:37:19,036 AND COMPLEMENT OR IN CASES 892 00:37:19,103 --> 00:37:20,705 REPLACE TRADITIONAL MODELS 893 00:37:20,771 --> 00:37:25,309 MAY 7TH, COMPLEMENTARY ANNOUNCED 894 00:37:25,376 --> 00:37:26,477 WINNERS OF CROWDSOURCING 895 00:37:26,544 --> 00:37:29,046 COMPETITION FOR INNOVATIVE IDEAS 896 00:37:29,113 --> 00:37:32,683 ON NAMS, THESE NEW APPROACH 897 00:37:32,750 --> 00:37:35,386 METHODOLOGIES AND EACH OF THE 20 898 00:37:35,453 --> 00:37:40,191 WINNING TEAMS WON $50,000 FOR 899 00:37:40,257 --> 00:37:42,226 INNOVATIVE SOLUTIONS AND JUDGING 900 00:37:42,293 --> 00:37:43,527 CRITERIA DEMONSTRATING OUT OF 901 00:37:43,594 --> 00:37:45,863 THE BOX SOLUTIONS ACROSS 902 00:37:45,930 --> 00:37:49,367 COMPETITION AREAS OF INSILICO, 903 00:37:49,433 --> 00:37:53,137 IN VITRO, INCHEMICO AND COMBIN 904 00:37:53,204 --> 00:37:54,739 TORIAL METHODS AND WINNING 905 00:37:54,805 --> 00:37:56,741 SOLUTIONS OF INTEREST TO NIAMS 906 00:37:56,807 --> 00:38:01,979 INCLUDE IDEAS TO DEVELOP A 907 00:38:02,046 --> 00:38:03,280 NEUROIMMUNOCUTANEOUS HUMAN SKILL 908 00:38:03,347 --> 00:38:06,317 EQUIVALENT AND ORGAN ON CHIP FOR 909 00:38:06,384 --> 00:38:09,086 STUDYING OSTEOARTHRITIS PAIN AND 910 00:38:09,153 --> 00:38:12,056 ORGANOID MODELING OF RHEUMATOID 911 00:38:12,123 --> 00:38:13,624 ARTHRITIS JOINTS AND IS GREAT 912 00:38:13,691 --> 00:38:15,826 NEWS THAT SOME WINNERS ARE 913 00:38:15,893 --> 00:38:18,329 FOCUSING ON TOPICS OF GREAT 914 00:38:18,396 --> 00:38:18,963 INTEREST TO US. 915 00:38:19,030 --> 00:38:21,465 SO MOVING ON TO SOME RESEARCH 916 00:38:21,532 --> 00:38:24,602 RESULTS FROM THE MOLECULAR 917 00:38:24,669 --> 00:38:27,238 TRANSDUCERS OF PHYSICAL ACTIVITY 918 00:38:27,304 --> 00:38:29,140 CONSORTIUM OR MOTOR PACK, MOTOR 919 00:38:29,206 --> 00:38:32,643 PACK IS AN NIH COMMON FUND 920 00:38:32,710 --> 00:38:35,112 PROGRAM LED BY NIAMS NATIONAL 921 00:38:35,179 --> 00:38:37,848 INSTITUTE OF AGING AND NIDDK AND 922 00:38:37,915 --> 00:38:40,818 IS A NATIONAL RESEARCH 923 00:38:40,885 --> 00:38:43,854 CONSORTIUM FIRST FUNDED IN 2017 924 00:38:43,921 --> 00:38:48,426 TO DISCOVER AND PRELIM NARLY 925 00:38:48,492 --> 00:38:49,994 CHARACTERIZE RANGE OF 926 00:38:50,061 --> 00:38:51,829 TRANSDUCERS PHYSICAL ACTIVITY IN 927 00:38:51,896 --> 00:38:54,632 HUMANS AND RATS OF VARIOUS AGES 928 00:38:54,699 --> 00:38:58,369 AND PROGRAM'S GOAL IS TO STUDY 929 00:38:58,436 --> 00:39:00,371 MOLECULAR CHANGES OCCURRING 930 00:39:00,438 --> 00:39:01,772 DURING EXERCISE AND ADVANCE 931 00:39:01,839 --> 00:39:04,542 UNDERSTANDING HOW PHYSICAL 932 00:39:04,608 --> 00:39:05,976 ACTIVITY IMPROVES AND PRESERVES 933 00:39:06,043 --> 00:39:08,679 HEALTH AND RESULTS FROM YOUNG 934 00:39:08,746 --> 00:39:10,981 ADULT RATS THAT UNDERWENT A 935 00:39:11,048 --> 00:39:13,017 TRAINING PROGRAM HAVE NOW BEEN 936 00:39:13,084 --> 00:39:15,286 PUBLISHED AND RESEARCHERS FOUND 937 00:39:15,352 --> 00:39:17,888 THAT BODILY TISSUES TESTED 938 00:39:17,955 --> 00:39:20,424 RESPOND TO EXERCISE TRAINING AND 939 00:39:20,491 --> 00:39:23,227 AMOUNTING TO OVER 35,000 940 00:39:23,294 --> 00:39:25,396 BIOLOGICAL MOLECULES RESPONDING 941 00:39:25,463 --> 00:39:27,198 AND ADAPTING TO ENDURANCE 942 00:39:27,264 --> 00:39:28,666 EXERCISE OVER TIME INCLUDING 943 00:39:28,733 --> 00:39:31,736 TISSUES FROM ORGANS NOT USUALLY 944 00:39:31,802 --> 00:39:33,137 ASSOCIATED WITH INFECTIOUS 945 00:39:33,204 --> 00:39:35,139 EXERCISE AND MOLECULAR CHANGES 946 00:39:35,206 --> 00:39:37,274 SEEN IN ALL TISSUES WAY IN WHICH 947 00:39:37,341 --> 00:39:39,543 EACH TISSUE RESPONDED WAS UNIQUE 948 00:39:39,610 --> 00:39:42,379 AND THEY ALSO FOUND DIFFERENCES 949 00:39:42,446 --> 00:39:43,714 IN RESPONSES BETWEEN MALE AND 950 00:39:43,781 --> 00:39:46,150 FEMALE RATS THAT WERE MORE 951 00:39:46,217 --> 00:39:48,219 WIDESPREAD THAN ANTICIPATED 952 00:39:48,285 --> 00:39:48,853 HIGHLIGHTING IMPORTANCE OF 953 00:39:48,919 --> 00:39:51,188 INCLUDING ANIMALS IN SEXES AND 954 00:39:51,255 --> 00:39:53,157 PRECLINICAL RESEARCH AND DATA 955 00:39:53,224 --> 00:39:54,959 PRODUCED THROUGH THIS RESEARCH 956 00:39:55,025 --> 00:39:58,496 PROJECT IS PUBLICLY AVAILABLE ON 957 00:39:58,562 --> 00:40:01,532 MOTOR PACK DATA HUB FOR FURTHER 958 00:40:01,599 --> 00:40:04,168 ANALYSIS AND DIRECT DOWNLOAD TO 959 00:40:04,235 --> 00:40:07,004 ENCOURAGE HYPOTHESES FROM 960 00:40:07,071 --> 00:40:08,639 BIOMEDICAL COMMUNITY AND INVITE 961 00:40:08,706 --> 00:40:11,242 MOTOR PACK INVESTIGATOR TO 962 00:40:11,308 --> 00:40:12,843 PRESENT FINDINGS AT FUTURE 963 00:40:12,910 --> 00:40:14,812 MEETING THAT IS EXCITING AND 964 00:40:14,879 --> 00:40:15,746 UNIQUE PROGRAM AND BELIEVE IT 965 00:40:15,813 --> 00:40:18,315 HAS BEEN A NUMBER OF YEARS 966 00:40:18,382 --> 00:40:20,084 CERTAINLY BEFORE MY TIME SINCE 967 00:40:20,151 --> 00:40:23,654 YOU HEARD ABOUT THIS PROGRAM AND 968 00:40:23,721 --> 00:40:24,955 LOOKING FORWARD TO THAT 969 00:40:25,022 --> 00:40:25,456 OPPORTUNITY. 970 00:40:25,523 --> 00:40:28,325 SO, WITH ALL OF THE EXCITING 971 00:40:28,392 --> 00:40:29,527 OPPORTUNITIES FOR NEW METH 972 00:40:29,593 --> 00:40:31,729 OTDOLOGIES AND INVALUABLE DATA 973 00:40:31,796 --> 00:40:34,031 FOR INTERROGATIONS SUCH AS MOTOR 974 00:40:34,098 --> 00:40:35,900 PACK DATA SET I WOULD LIKE TO 975 00:40:35,966 --> 00:40:38,502 SHARE A RESEARCH FROM NIH CENTER 976 00:40:38,569 --> 00:40:40,738 FROM INFORMATION TECHNOLOGY AND 977 00:40:40,805 --> 00:40:43,174 NIH OFFICE OF DATA SCIENCE 978 00:40:43,240 --> 00:40:45,009 SHARING THAT ENABLES RESEARCHERS 979 00:40:45,075 --> 00:40:49,613 TO TRY THE CLOUD IN A SECURE 980 00:40:49,680 --> 00:40:51,048 NIH-APPROVED ENVIRONMENT. 981 00:40:51,115 --> 00:40:54,718 NIH CLOUD LAB IS A NO-COST 90 982 00:40:54,785 --> 00:40:57,454 DAY CLOUD ADOPTION PROGRAM 983 00:40:57,521 --> 00:40:59,089 PROVIDING AN AMOUNT -- AN 984 00:40:59,156 --> 00:41:01,625 ACCOUNT WITH 5 HUNDRED DOLLARS 985 00:41:01,692 --> 00:41:05,162 OF AMAZON WEB SERVICE SERVICES 986 00:41:05,229 --> 00:41:08,032 GOOGLE CLOUD OR MICROSOFT AZUR 987 00:41:08,098 --> 00:41:11,168 CREDITS ACCESS TO CURATED 988 00:41:11,235 --> 00:41:13,470 BIOINFORMATICS TUT TORE &S AND 989 00:41:13,537 --> 00:41:14,972 SUPPORTS FROM NIH EXPERTS CLOUD 990 00:41:15,039 --> 00:41:18,008 LAB AVAILABLE TO INTRAMURAL 991 00:41:18,075 --> 00:41:20,411 RESEARCHERS AND NIH STAFF SINCE 992 00:41:20,477 --> 00:41:23,380 JUNE 2022 AND NEWLY AVAILABLE TO 993 00:41:23,447 --> 00:41:26,417 RECIPIENTS OF NIH FUNDING AND 994 00:41:26,483 --> 00:41:27,618 RESEARCHERS INSTITUTIONS 995 00:41:27,685 --> 00:41:29,486 ELIGIBLE FOR NIH FUNDING WHO 996 00:41:29,553 --> 00:41:32,122 MIGHT NOT HAVE AN ACTIVE AWARD 997 00:41:32,189 --> 00:41:33,858 AND PARTICIPANTS CAN SIGN UP ANY 998 00:41:33,924 --> 00:41:35,626 TIME AND USE CLOUD LAB TO TRY 999 00:41:35,693 --> 00:41:37,595 BEFORE YOU BUY AND EVALUATE IF 1000 00:41:37,661 --> 00:41:39,864 CLOUD IS A GOOD FIT FOR YOUR 1001 00:41:39,930 --> 00:41:41,899 PROJECT WITHOUT MAKING A 1002 00:41:41,966 --> 00:41:43,033 LONG-TERM COMMITMENT TO LEARN 1003 00:41:43,100 --> 00:41:46,270 NEW SKILLS ACCESSING TUTORIALS 1004 00:41:46,337 --> 00:41:47,671 TO DEMONSTRATE HOW TO RUN 1005 00:41:47,738 --> 00:41:50,107 REALISTIC BIOFORMATIC DATA 1006 00:41:50,174 --> 00:41:52,543 SCIENCE AND AI WORKFLOWS AND 1007 00:41:52,610 --> 00:41:55,179 DEVELOP NEW TOOLS PROTOTYPING 1008 00:41:55,246 --> 00:41:57,615 ARCHITECTURES AND EVALUATING 1009 00:41:57,681 --> 00:42:00,384 SOFTWARE AND HARDWARE 1010 00:42:00,451 --> 00:42:02,119 COMBINATIONS EXPLORING POTENTIAL 1011 00:42:02,186 --> 00:42:03,621 OF GENERATIVE AI AND PROGRAM 1012 00:42:03,687 --> 00:42:05,956 OFFICE OPEN TO RESEARCHERS WITH 1013 00:42:06,023 --> 00:42:06,991 ALL LEVELS OF CLOUD KNOWLEDGE 1014 00:42:07,057 --> 00:42:08,425 FROM VERY BEGINNERS TO 1015 00:42:08,492 --> 00:42:09,660 EXPERIENCE TEAMS AND IF YOU 1016 00:42:09,727 --> 00:42:12,363 WOULD LIKE TO LEARN MORE ABOUT 1017 00:42:12,429 --> 00:42:13,998 THIS OPPORTUNITY THAT IS NOW 1018 00:42:14,064 --> 00:42:15,799 AVAILABLE TO THE BROADER 1019 00:42:15,866 --> 00:42:17,902 COMMUNITY, YOU CAN SCAN THAT 1020 00:42:17,968 --> 00:42:19,203 Q.R. CODE OR WRITE TO US. 1021 00:42:19,270 --> 00:42:23,641 WE WILL SEND YOU TO THE RIGHT 1022 00:42:23,707 --> 00:42:24,174 PLACE. 1023 00:42:24,241 --> 00:42:26,043 SO, NEXT, I WOULD LIKE TO DRAW 1024 00:42:26,110 --> 00:42:29,413 YOUR ATTENTION TO AN EXCITING 1025 00:42:29,480 --> 00:42:30,047 NEW OPPORTUNITY. 1026 00:42:30,114 --> 00:42:32,783 THIS RECOGNIZES THE CRITICAL 1027 00:42:32,850 --> 00:42:33,651 NEED TO EXTEND RESEARCH 1028 00:42:33,717 --> 00:42:34,919 PARTICIPATION OPPORTUNITIES TO 1029 00:42:34,985 --> 00:42:37,888 BROADER COMMUNITIES. 1030 00:42:37,955 --> 00:42:41,191 ONE OF DR. BERTAGNOLLI'S NIH 1031 00:42:41,258 --> 00:42:43,494 DIRECTORS TOP PRIORITIES IS 1032 00:42:43,560 --> 00:42:45,896 BETTER SERVING RURAL COMMUNITIES 1033 00:42:45,963 --> 00:42:47,398 COMING FROM A VERY RURAL 1034 00:42:47,464 --> 00:42:52,169 ENVIRONMENT 100 MILES AWAY FROM 1035 00:42:52,236 --> 00:42:55,272 A CLIP IN WYOMING WHO IS 1036 00:42:55,339 --> 00:42:57,274 UNDERSTANDING OF CHALLENGES OF 1037 00:42:57,341 --> 00:42:59,276 COMMUNITIES AND APRIL FIFTH NIH 1038 00:42:59,343 --> 00:43:01,345 COUNCIL OF COUNCILS APPROVED 1039 00:43:01,412 --> 00:43:03,213 CONCEPT OF ESTABLISHING NETWORK 1040 00:43:03,280 --> 00:43:05,282 FOR CLINICAL RESEARCH AND 1041 00:43:05,349 --> 00:43:07,251 PRIMARY CARE THAT DR. 1042 00:43:07,318 --> 00:43:08,185 BERTAGNOLLI PRESENTED TO THEM 1043 00:43:08,252 --> 00:43:11,188 AND PROGRAM RECENTLY ANNOUNCED 1044 00:43:11,255 --> 00:43:13,223 PILOT RESEARCH OPPORTUNITY 1045 00:43:13,290 --> 00:43:14,959 CALLED INTEGRATING CLINICAL 1046 00:43:15,025 --> 00:43:16,660 RESEARCH INTO PRIMARY CARE 1047 00:43:16,727 --> 00:43:18,629 SETTINGS THROUGH NETWORK 1048 00:43:18,696 --> 00:43:20,631 RESEARCH HUBS AND PURPOSE OF THE 1049 00:43:20,698 --> 00:43:22,900 RESEARCH OPPORTUNITY 1050 00:43:22,967 --> 00:43:24,168 ANNOUNCEMENT IS INVITING 1051 00:43:24,234 --> 00:43:27,204 APPLICATIONS BY EXISTING 1052 00:43:27,271 --> 00:43:28,772 CLINICAL NETWORK RESEARCH AND 1053 00:43:28,839 --> 00:43:30,274 ORGANIZATIONS CURRENTLY 1054 00:43:30,341 --> 00:43:32,109 AFFILIATED AND PARTICIPATING IN 1055 00:43:32,176 --> 00:43:34,845 SPECIFIC EXISTING CLINICAL 1056 00:43:34,912 --> 00:43:36,347 RESEARCH NETWORKS SERVING AS 1057 00:43:36,413 --> 00:43:38,983 NETWORK RESEARCH HUB AND LARGER 1058 00:43:39,049 --> 00:43:41,018 NET INFRASTRUCTURE SUPPORTING 1059 00:43:41,085 --> 00:43:42,853 RESEARCH AND CARE SETTINGS AND 1060 00:43:42,920 --> 00:43:45,189 EFFORT WILL START SMALL AND 1061 00:43:45,255 --> 00:43:46,857 FOCUSED DR. BERTAGNOLLI HAS 1062 00:43:46,924 --> 00:43:49,026 GRAND PLANS HOW THIS COULD 1063 00:43:49,093 --> 00:43:49,893 EVOLVE OVER TIME. 1064 00:43:49,960 --> 00:43:52,296 OPPORTUNITY IS LIMITED TO 1065 00:43:52,363 --> 00:43:54,665 ORGANIZATIONS CURRENTLY THAT 1066 00:43:54,732 --> 00:43:56,433 FOCUS ON SERVING RURAL 1067 00:43:56,500 --> 00:43:58,035 COMMUNITIES AND COMPLETED 1068 00:43:58,102 --> 00:44:01,071 APPLICATIONS ARE JUNE -- THEY 1069 00:44:01,138 --> 00:44:02,940 ARE DUE JUNE 14TH. 1070 00:44:03,007 --> 00:44:06,043 SO, IN THE NEXT FEW MINUTES, I 1071 00:44:06,110 --> 00:44:07,211 WANT TO HIGHLIGHT SEVERAL 1072 00:44:07,277 --> 00:44:10,047 IMPORTANT NIH AND NIAMS POLICY 1073 00:44:10,114 --> 00:44:12,883 CHANGES AND AS DISCUSSED IN PAST 1074 00:44:12,950 --> 00:44:15,185 MEETINGS, IN FACT, YOU -- SOME 1075 00:44:15,252 --> 00:44:18,055 HEARD FROM DR. NONI BURN 1076 00:44:18,122 --> 00:44:20,424 DIRECTOR OF CENTER FOR 1077 00:44:20,491 --> 00:44:21,625 SCIENTIFIC REVIEW A FEW MEETINGS 1078 00:44:21,692 --> 00:44:22,326 BACK. 1079 00:44:22,393 --> 00:44:24,862 NIH IS IMPLEMENTING A SIMPLIFIED 1080 00:44:24,928 --> 00:44:26,897 FRAMEWORK FOR PEER REVIEW OF 1081 00:44:26,964 --> 00:44:29,666 MAJORITY OF COMPETING RESEARCH 1082 00:44:29,733 --> 00:44:31,602 PROJECT GRANT APPLICATIONS 1083 00:44:31,668 --> 00:44:34,071 BEGINNING WITH SUBMISSIONS WITH 1084 00:44:34,138 --> 00:44:36,206 DUE DATES JANUARY 2025. 1085 00:44:36,273 --> 00:44:39,410 SIMPLIFIED PEER REVIEW FRAMEWORK 1086 00:44:39,476 --> 00:44:41,545 AIMS TO BETTER FACILITATE 1087 00:44:41,612 --> 00:44:42,780 MISSION OF SCIENTIFIC PEER 1088 00:44:42,846 --> 00:44:44,715 REVIEW THAT IS IDENTIFYING 1089 00:44:44,782 --> 00:44:46,517 STRONGEST HIGHEST IMPACT 1090 00:44:46,583 --> 00:44:48,185 RESEARCH BY ENABLING PEER 1091 00:44:48,252 --> 00:44:50,587 REVIEWERS TO BETTER FOCUS ON 1092 00:44:50,654 --> 00:44:51,922 ANSWERING KEY QUESTIONS 1093 00:44:51,989 --> 00:44:54,224 NECESSARY TO ASSESS SCIENTIFIC 1094 00:44:54,291 --> 00:44:56,060 AND TECHNICAL MERIT OF PROPOSED 1095 00:44:56,126 --> 00:44:58,028 RESEARCH AND SHOULD PROPOSED 1096 00:44:58,095 --> 00:45:01,565 RESEARCH BE CONDUCTED AND CAN 1097 00:45:01,632 --> 00:45:03,567 PROPOSED RESEARCH PROJECT BE 1098 00:45:03,634 --> 00:45:04,935 CONDUCTED? WHILE ALSO 1099 00:45:05,002 --> 00:45:08,038 MITIGATING THE EFFECT OF 1100 00:45:08,105 --> 00:45:10,140 REPUTATIONAL BIAS BY FOCUSING 1101 00:45:10,207 --> 00:45:13,477 EVALUATION OF INVESTIGATOR AND 1102 00:45:13,544 --> 00:45:14,845 ENVIRONMENT TO WITHIN THE 1103 00:45:14,912 --> 00:45:16,246 CONTEXT OF THE PROPOSED RESEARCH 1104 00:45:16,313 --> 00:45:21,385 AND INTENDED TO REDUCE REVIEWER 1105 00:45:21,452 --> 00:45:22,119 BURDEN SHIFTING POLICY 1106 00:45:22,186 --> 00:45:24,521 COMPLIANCE ACTIVITIES TO NIH 1107 00:45:24,588 --> 00:45:26,123 STAFF AND SIMPLIFIED FRAMEWORK 1108 00:45:26,190 --> 00:45:31,095 FOR NIH PEER REVIEWED CRITERIA 1109 00:45:31,161 --> 00:45:33,764 RETAINS 5 REGULATORY CRITERIA 1110 00:45:33,831 --> 00:45:35,833 APPROACH ENVIRON PT AND 1111 00:45:35,899 --> 00:45:37,634 REORGANIZES THEM INTO THREE 1112 00:45:37,701 --> 00:45:39,470 FACTORS, 2 OF WHICH WILL RECEIVE 1113 00:45:39,536 --> 00:45:42,739 A NUMERICAL CRITERION SCORE AND 1114 00:45:42,806 --> 00:45:45,843 ONE WILL BE EVALUATED FOR BY 1115 00:45:45,909 --> 00:45:46,910 SUFFICIENCY AND ALL THREE 1116 00:45:46,977 --> 00:45:49,279 FACTORS WILL BE CONSIDERED IN 1117 00:45:49,346 --> 00:45:50,981 ARRIVING IN OVERALL IMPACT 1118 00:45:51,048 --> 00:45:53,617 SCORES AND I THINK I APPLAUD 1119 00:45:53,684 --> 00:45:55,953 GOALS OF REVISED REVIEW 1120 00:45:56,019 --> 00:45:58,355 CRITERION AND EAGER TO SEE THEM 1121 00:45:58,422 --> 00:45:59,690 IMPLEMENTED. 1122 00:45:59,756 --> 00:46:02,126 SO, CHANGES ARE ALSO COMING FOR 1123 00:46:02,192 --> 00:46:04,261 NIH FELLOWSHIP APPLICATION AND 1124 00:46:04,328 --> 00:46:06,897 REVIEW PROCESS AND MOTIVATED BY 1125 00:46:06,964 --> 00:46:09,166 SIMILAR CONCERNS OR GOALS AND 1126 00:46:09,233 --> 00:46:11,835 FELLOWSHIP APPLICATIONS SUBMIT 1127 00:46:11,902 --> 00:46:14,738 ON OR AFTER JANUARY 25TH 2025 1128 00:46:14,805 --> 00:46:16,140 WILL FOLLOW REVISED APPLICATION 1129 00:46:16,206 --> 00:46:18,542 AND REVISED REVIEW CRITERIA. 1130 00:46:18,609 --> 00:46:20,677 GOAL OF THE CHANGES IS TO 1131 00:46:20,744 --> 00:46:23,180 IMPROVE CHANCES THAT PROMISING 1132 00:46:23,247 --> 00:46:25,382 FELLOWSHIP CANDIDATES WILL BE 1133 00:46:25,449 --> 00:46:27,184 CONSISTENTLY IDENTIFIED BY 1134 00:46:27,251 --> 00:46:28,852 SCIENTIFIC REVIEW PANELS AND 1135 00:46:28,919 --> 00:46:31,088 CHANGES WILL BETTER FOCUS 1136 00:46:31,155 --> 00:46:33,056 REVIEWER ATTENTION ON THREE KEY 1137 00:46:33,123 --> 00:46:33,957 ASSESSMENTS. 1138 00:46:34,024 --> 00:46:35,592 FELLOWSHIP CANDIDATES 1139 00:46:35,659 --> 00:46:38,428 PREPAREDNESS AND POTENTIAL AND 1140 00:46:38,495 --> 00:46:40,731 RESEARCH TRAINING PLAN, AND 1141 00:46:40,797 --> 00:46:43,567 COMMITMENT TO THE CANDIDATE. 1142 00:46:43,634 --> 00:46:45,802 THE CHANGES WILL ALSO ENSURE 1143 00:46:45,869 --> 00:46:48,972 BROAD RANGE OF CANDIDATES AND 1144 00:46:49,039 --> 00:46:51,175 RESEARCH TRAINING CANDIDATES CAN 1145 00:46:51,241 --> 00:46:53,010 BE RECOGNIZED AS MERITORIOUS 1146 00:46:53,076 --> 00:46:55,012 CLARIFYING AND SIMPLIFYING 1147 00:46:55,078 --> 00:46:56,547 LANGUAGE AND APPLICATION OF THE 1148 00:46:56,613 --> 00:46:59,082 REVIEW CRITERIA AND ALSO CHANGES 1149 00:46:59,149 --> 00:47:02,085 WILL REDUCE BIAS AND REVIEW 1150 00:47:02,152 --> 00:47:04,755 EMPHASIZING COMMITMENT TO 1151 00:47:04,821 --> 00:47:05,189 CANDIDATE WITHOUT 1152 00:47:05,255 --> 00:47:07,024 UNDERCONSIDERATION OF SPONSOR 1153 00:47:07,090 --> 00:47:07,858 AND INSTITUTIONAL REPUTATION. 1154 00:47:07,925 --> 00:47:09,626 SO I ENCOURAGE ALL OF YOU TO 1155 00:47:09,693 --> 00:47:12,429 LEARN MORE ABOUT THE CHANGES AND 1156 00:47:12,496 --> 00:47:13,730 ADDITIONAL GUIDANCE RELATED TO 1157 00:47:13,797 --> 00:47:17,568 THAT ON NIH WEBSITE. 1158 00:47:17,634 --> 00:47:19,403 ANOTHER CHANGE THAT SOME OF YOU 1159 00:47:19,469 --> 00:47:21,338 MAY HAVE OR MAY ALREADY BE AWARE 1160 00:47:21,405 --> 00:47:24,541 OF, THIS IS RELATED TO THE 1161 00:47:24,608 --> 00:47:27,878 RECENT EVALUATION OF THE 1162 00:47:27,945 --> 00:47:30,214 IMMUNOLOGY AND RESPIRATORY 1163 00:47:30,280 --> 00:47:31,481 SYSTEMS CLUSTER OF STUDY SECTION 1164 00:47:31,548 --> 00:47:34,318 BUSINESS NIH CENTER FOR 1165 00:47:34,384 --> 00:47:37,688 SCIENTIFIC REVIEW. 1166 00:47:37,754 --> 00:47:39,189 CSR'S EVALUATING PANEL QUALITY 1167 00:47:39,256 --> 00:47:41,825 OR REVIEW OR INQUIRE PROGRAM 1168 00:47:41,892 --> 00:47:44,494 INTEGRATES DATA AND INPUT FROM 1169 00:47:44,561 --> 00:47:46,029 MULTIPLE STAKEHOLDERS TO 1170 00:47:46,096 --> 00:47:48,565 DETERMINE IF CHANGES IN STUDY 1171 00:47:48,632 --> 00:47:50,334 SECTION FOCUS OR SCOPE ARE NEED 1172 00:47:50,400 --> 00:47:51,902 TODAY FACILITATE IDENTIFICATION 1173 00:47:51,969 --> 00:47:54,471 OF HIGHLY IMPACTED SCIENCE WITH 1174 00:47:54,538 --> 00:47:55,872 SPERNL CONSIDERATION OF EMERGING 1175 00:47:55,939 --> 00:47:58,141 AREAS OF SCIENCE. 1176 00:47:58,208 --> 00:48:01,311 EVALUATION OF IMMUNOLOGY AND 1177 00:48:01,378 --> 00:48:03,647 RESPIRATORY SYSTEM CLUSTER 1178 00:48:03,714 --> 00:48:04,982 INCLUDING ARTHRITIS CONNECTIVE 1179 00:48:05,048 --> 00:48:07,251 TISSUE OR SKIN OR ATS SECTION 1180 00:48:07,317 --> 00:48:08,986 THAT MANY ARE FAMILIAR WITH 1181 00:48:09,052 --> 00:48:10,187 STARTED LAST YEAR AND RESULT OF 1182 00:48:10,254 --> 00:48:12,155 THAT EVALUATION, MOST 1183 00:48:12,222 --> 00:48:13,023 APPLICATIONS THAT WERE 1184 00:48:13,090 --> 00:48:16,159 PREVIOUSLY REVIEWED BY ACTS WILL 1185 00:48:16,226 --> 00:48:18,495 NOW BE REVIEWED BY NEW STUDY 1186 00:48:18,562 --> 00:48:20,697 SECTION CALLED SKIN AND 1187 00:48:20,764 --> 00:48:24,368 CONNECTIVE TISSUE SCIENCES OR 1188 00:48:24,434 --> 00:48:24,668 SCTS. 1189 00:48:24,735 --> 00:48:27,871 WITH REMAINING TO BE REVIEWED BY 1190 00:48:27,938 --> 00:48:31,275 MECHANISMS OF AUTO IMMUNITY OR 1191 00:48:31,341 --> 00:48:32,576 MAI STUDY SECTION AND SMALL 1192 00:48:32,643 --> 00:48:34,911 NUMBER OF APPLICATIONS TO BE 1193 00:48:34,978 --> 00:48:39,182 REFER TODAY IMMUNE MECHANISMS OF 1194 00:48:39,249 --> 00:48:40,617 HYPERSENSITIVITY ORAL EARTH JI 1195 00:48:40,684 --> 00:48:43,587 OR IMHA STUDY SECTION AND 1196 00:48:43,654 --> 00:48:46,156 IMPLEMENTATION OF CHANGES IS 1197 00:48:46,223 --> 00:48:47,758 ONGOING BETWEEN NOW AND 1198 00:48:47,824 --> 00:48:51,194 APPROXIMATELY THIS FALL AND THIS 1199 00:48:51,261 --> 00:48:53,730 INQUIRE PROGRAM IS ONGOING 1200 00:48:53,797 --> 00:48:55,432 ASSESSMENT PLAN ACROSS ALL STUDY 1201 00:48:55,499 --> 00:48:56,933 SECTIONS TO ENSURE THAT WE 1202 00:48:57,000 --> 00:48:58,835 CONTINUE TO THINK ABOUT FOCUS 1203 00:48:58,902 --> 00:49:02,639 AND SCOPE AND MAKE SURE THAT 1204 00:49:02,706 --> 00:49:06,076 STUDY SECTIONS KEEP UP WITH 1205 00:49:06,143 --> 00:49:06,410 SCIENCE. 1206 00:49:06,476 --> 00:49:08,979 WHEN WE MET LAST TIME, I SHARED 1207 00:49:09,046 --> 00:49:10,347 WITH YOU THE VERY STRONG 1208 00:49:10,414 --> 00:49:13,350 RECOMMENDATIONS FROM NIH 1209 00:49:13,417 --> 00:49:15,185 ADVISORY COMMITTEE TO THE 1210 00:49:15,252 --> 00:49:16,153 DIRECTOR WORKING GROUP 1211 00:49:16,219 --> 00:49:20,157 REENVISIONING NIH SUPPORTED POST 1212 00:49:20,223 --> 00:49:21,558 DOCTORAL TRAINING WORKING GROUP 1213 00:49:21,625 --> 00:49:25,429 CHARGED BY NIH DIRECTOR TO 1214 00:49:25,495 --> 00:49:26,897 REENVISION POST DOCK TORIAL 1215 00:49:26,963 --> 00:49:28,732 EXPERIENCE SO IT IS SUSTAINABLE 1216 00:49:28,799 --> 00:49:30,567 AND INCLUSIVE AND BETTER 1217 00:49:30,634 --> 00:49:33,136 RECOGNIZE AND REWARD VALUE OF 1218 00:49:33,203 --> 00:49:35,505 POST DOCTORAL SCHOLARS THIS US 1219 00:49:35,572 --> 00:49:38,108 SCIENTIFIC ENTERPRISE AND 1220 00:49:38,175 --> 00:49:38,909 WORKING GROUP'S TOP 1221 00:49:38,975 --> 00:49:40,777 RECOMMENDATION WAS FOR NIH TO 1222 00:49:40,844 --> 00:49:42,813 INCREASE PAY AND BENEFITS FOR 1223 00:49:42,879 --> 00:49:46,083 NIH SUPPORTED POST DOCTORAL 1224 00:49:46,149 --> 00:49:48,919 SCHOLARS AND THAT PROCESS HAS 1225 00:49:48,985 --> 00:49:50,153 OCCURRED INTERNALLY WITHIN 1226 00:49:50,220 --> 00:49:51,621 INTRAMURAL RESEARCH PROGRAM HERE 1227 00:49:51,688 --> 00:49:55,192 AND IN APRIL NIH ANNOUNCED 1228 00:49:55,258 --> 00:49:58,362 INCREASING ANNUAL PAY LEVELS FOR 1229 00:49:58,428 --> 00:49:59,029 PREDOCTORAL AND DOCTORAL 1230 00:49:59,096 --> 00:50:02,032 SCHOLARS AT NIH FUNDED EXTERNAL 1231 00:50:02,099 --> 00:50:05,802 INSTITUTIONS RECIPIENTS OF RUTH 1232 00:50:05,869 --> 00:50:09,706 L KOOERSTEIN NSA AWARDS AND 1233 00:50:09,773 --> 00:50:10,907 PREDOCTORAL SCHOLARS WILL 1234 00:50:10,974 --> 00:50:12,809 INITIALLY RECEIVE A 4% INCREASE 1235 00:50:12,876 --> 00:50:14,911 IN THEIR PAY LEVEL AND POST 1236 00:50:14,978 --> 00:50:16,680 DOCTORAL SCHOLARS WILL INITIALLY 1237 00:50:16,747 --> 00:50:21,918 RECEIVE INCREASE OF 8% WITH PAY 1238 00:50:21,985 --> 00:50:23,353 LEVELS ADJUSTED UPWARDLY BASED 1239 00:50:23,420 --> 00:50:25,989 ON YEARS OF EXPERIENCE AND NIH 1240 00:50:26,056 --> 00:50:28,225 AIMS TO INCREASE PAY LEVELS OVER 1241 00:50:28,291 --> 00:50:32,095 NEXT FIVE YEARS AND ELIGIBLE 1242 00:50:32,162 --> 00:50:33,163 RECIPIENTS WILL RECEIVE A 5 1243 00:50:33,230 --> 00:50:36,133 HUNDRED DOLLAR INCREASE IN 1244 00:50:36,199 --> 00:50:37,768 SUBSIDIES FOR CHILD CARE AND 1245 00:50:37,834 --> 00:50:40,404 ADDITIONAL 2 HUNDRED DOLLARS 1246 00:50:40,470 --> 00:50:41,872 RELATED FOR TRAINING AND 1247 00:50:41,938 --> 00:50:44,274 EXPENSES AND LOTS OF DISCUSSION 1248 00:50:44,341 --> 00:50:48,745 ABOUT HOW TO IMPLEMENT 1249 00:50:48,812 --> 00:50:50,447 RECOMMENDATIONS IN CONTEXT OF A 1250 00:50:50,514 --> 00:50:53,216 TIGHT BUDGET RELATIVELY MODEST 1251 00:50:53,283 --> 00:50:55,018 INCREASES WITH PLAN TO CONTINUE 1252 00:50:55,085 --> 00:50:56,253 INCREASES OVER TIME AND 1253 00:50:56,319 --> 00:50:59,423 RECOGNIZING IMPORTANCE OF THIS 1254 00:50:59,489 --> 00:50:59,656 TOPIC. 1255 00:50:59,723 --> 00:51:02,893 HERE AT NIAMS AS PART OF EFFORT 1256 00:51:02,959 --> 00:51:06,196 TO MAXIMIZE SCIENTIFIC IMPACT OF 1257 00:51:06,263 --> 00:51:08,532 INVESTMENTS AND SUPPORT A BROAD 1258 00:51:08,598 --> 00:51:11,034 PORTFOLIO OF MERITORIOUS 1259 00:51:11,101 --> 00:51:13,603 RESEARCH GRANTS IN NIAMS MISSION 1260 00:51:13,670 --> 00:51:16,640 INSTITUTE ANNOUNCED A NEW 1261 00:51:16,706 --> 00:51:18,208 FUNDING POLICY AND NEW POLICY 1262 00:51:18,275 --> 00:51:20,210 IMPORTANTLY IS STRONGLY ALIGNED 1263 00:51:20,277 --> 00:51:22,913 WITH BROADER NIH GOALS AND 1264 00:51:22,979 --> 00:51:25,348 EFFORTS TO BALANCE, STRENGTHEN, 1265 00:51:25,415 --> 00:51:28,218 BROADEN AND STABILIZE THE 1266 00:51:28,285 --> 00:51:29,853 BIOMEDICAL RESEARCH WORKFORCE 1267 00:51:29,920 --> 00:51:32,122 AND EFFECTIVE WITH FISCAL YEAR 1268 00:51:32,189 --> 00:51:36,259 2025 APPLICATIONS, ALL NEW AND 1269 00:51:36,326 --> 00:51:38,562 RENEWED R01 APPLICATIONS WILL BE 1270 00:51:38,628 --> 00:51:40,530 CONSIDERED LOW PROGRAM PRIORITY 1271 00:51:40,597 --> 00:51:45,469 IF PI HAS 3 OR MORE ACTIVE R01 1272 00:51:45,535 --> 00:51:47,204 EQUIVALENT GRANTS EITHER FUNDED 1273 00:51:47,270 --> 00:51:49,306 BY NIAMS OR ANOTHER INSTITUTE 1274 00:51:49,372 --> 00:51:51,641 CENTER OR OFFICE AND POLICY WILL 1275 00:51:51,708 --> 00:51:54,110 APPLY TO R01 APPLICATIONS FROM 1276 00:51:54,177 --> 00:51:56,713 MULTIPLE PIS IF ONE HAS THREE OR 1277 00:51:56,780 --> 00:52:05,655 MORE ACTIVE R01 EQUIVALENT 1278 00:52:05,722 --> 00:52:08,625 GRANTS AND EXEMPTIONS INCLUDE -- 1279 00:52:08,692 --> 00:52:10,861 NIAMS FUNDED R01 OR IF ONE OR 1280 00:52:10,927 --> 00:52:13,697 MORE EXISTING ACTIVE GRANTS WILL 1281 00:52:13,763 --> 00:52:15,198 EXPIRE IN LESS THAN A YEAR 1282 00:52:15,265 --> 00:52:18,535 RESULTING IN 2 OR FEWER ACTIVE 1283 00:52:18,602 --> 00:52:20,504 R01 EQUIVALENT GRANTS OR 1284 00:52:20,570 --> 00:52:24,441 EXISTING R01 ACTIVE EQUIVALENT 1285 00:52:24,508 --> 00:52:25,709 GRANTS ARE FROM INSTITUTE 1286 00:52:25,775 --> 00:52:27,310 CENTERS AND OFFICES THAT WOULD 1287 00:52:27,377 --> 00:52:28,645 BE FIRST NIAMS GRANT. 1288 00:52:28,712 --> 00:52:32,816 I ALSO JUST WANT TO MAKE THE 1289 00:52:32,883 --> 00:52:34,217 GENERAL COMMENT THAT THIS IS OR 1290 00:52:34,284 --> 00:52:36,586 HAS BEEN DEEPLY DISCUSSED ACROSS 1291 00:52:36,653 --> 00:52:40,524 NIH WITH A CONSENSUS THAT THIS 1292 00:52:40,590 --> 00:52:41,825 IS AN IMPORTANT -- THESE SORTS 1293 00:52:41,892 --> 00:52:44,127 OF EFFORTS ARE GOING TO BE 1294 00:52:44,194 --> 00:52:47,097 IMPORTANT DURING THESE TIGHT 1295 00:52:47,163 --> 00:52:48,532 BUDGETARY TIMES TO STAGIZE 1296 00:52:48,598 --> 00:52:49,299 RESEARCH WORKFORCE. 1297 00:52:49,366 --> 00:52:53,303 WE WERE, YOU KNOW, PLEASED TO BE 1298 00:52:53,370 --> 00:52:55,539 ABLE TO ADOPT THIS POLICY 1299 00:52:55,605 --> 00:53:03,480 STARTING IN THE COMING YEAR. 1300 00:53:03,547 --> 00:53:06,216 LAST BUT NOT LEAST NIAM PLAN 1301 00:53:06,283 --> 00:53:08,351 FISCAL YEARS 20205 TO 2020 KNIFE 1302 00:53:08,418 --> 00:53:13,456 AND WILL HEAR LATER TODAY FROM 1303 00:53:13,523 --> 00:53:15,191 STEPHANIE BUREAUS FROM A POLICY 1304 00:53:15,258 --> 00:53:16,526 AND PLANNING BRANCH THIS 1305 00:53:16,593 --> 00:53:18,528 AFTERNOON AND WILL KEEP MY 1306 00:53:18,595 --> 00:53:19,596 REMARKS ABOUT THIS BRIEF AND 1307 00:53:19,663 --> 00:53:22,232 REMIND YOU THAT NIAMS STRATEGIC 1308 00:53:22,299 --> 00:53:23,633 PLANS ARE IMPORTANT BECAUSE THEY 1309 00:53:23,700 --> 00:53:25,835 REPRESENT A PUBLIC STATEMENT OF 1310 00:53:25,902 --> 00:53:28,171 THE INSTITUTE'S INTEREST, THEY 1311 00:53:28,238 --> 00:53:31,207 SEFB AS A GUIDE POST FOR THE 1312 00:53:31,274 --> 00:53:34,210 SCIENTIFIC COMMUNITY AND AS AN 1313 00:53:34,277 --> 00:53:35,679 INTERNAL REFERENCE DOCUMENT AND 1314 00:53:35,745 --> 00:53:39,616 WE HAVE THEREFORE MADE A 1315 00:53:39,683 --> 00:53:41,651 CONCERTED EFFORT TO CANVAS THOSE 1316 00:53:41,718 --> 00:53:43,186 INTERESTED PROVIDING THEM 1317 00:53:43,253 --> 00:53:44,287 OPPORTUNITIES TO PROVIDE INPUT 1318 00:53:44,354 --> 00:53:46,423 AND INCLUDING IN SEPTEMBER OF 1319 00:53:46,489 --> 00:53:52,896 LAST YEAR OVER 160 RESEARCHERS 1320 00:53:52,963 --> 00:53:53,196 A 1321 00:53:53,263 --> 00:53:54,564 AS WELL AS STAFF FROM INSTITUTE 1322 00:53:54,631 --> 00:53:57,033 AS CROSS NIH AND PATIENT 1323 00:53:57,100 --> 00:53:58,001 REPRESENTATIVES AND OTHERS 1324 00:53:58,068 --> 00:54:00,303 JOINED TO SHARE IDEAS ON 1325 00:54:00,370 --> 00:54:02,172 CROSS-CUTTING TOPICS THAT 1326 00:54:02,238 --> 00:54:03,139 INSTITUTE SHOULD PURSUE 1327 00:54:03,206 --> 00:54:06,543 THROUGHOUT THE END OF THE 1328 00:54:06,610 --> 00:54:06,776 DECADE. 1329 00:54:06,843 --> 00:54:08,411 LAST FALL INSTITUTE ISSUED 1330 00:54:08,478 --> 00:54:09,479 ANOTHER REQUEST FOR INFORMATION 1331 00:54:09,546 --> 00:54:13,717 TO GET FURTHER INPUT ON SUBSET 1332 00:54:13,783 --> 00:54:16,720 OF TOPICS IDENTIFIED IN PROCESS 1333 00:54:16,786 --> 00:54:19,322 AND SUGGESTIONS WE HAD RECEIVED 1334 00:54:19,389 --> 00:54:22,292 AS PART OF THE STRATEGIC 1335 00:54:22,359 --> 00:54:23,760 PLANNING PROCESS. 1336 00:54:23,827 --> 00:54:25,462 STAFF NOW REVIEWED INPUT 1337 00:54:25,528 --> 00:54:28,031 RECEIVED AND PREPARED A DRAFT 1338 00:54:28,098 --> 00:54:29,933 STRATEGIC PLAN FOCUSING ON 1339 00:54:30,000 --> 00:54:32,202 THEMATIC RESEARCH OPPORTUNITIES 1340 00:54:32,268 --> 00:54:33,503 ALLOWING INSTITUTE TO MAKE A 1341 00:54:33,570 --> 00:54:35,472 DIFFERENCE IN THE LIVES OF 1342 00:54:35,538 --> 00:54:38,108 IDEALLY ALL PEOPLE LIVING IN 1343 00:54:38,174 --> 00:54:40,176 AMERICA AND SHARED DRAFT PLAN 1344 00:54:40,243 --> 00:54:41,945 WITH MEMBERS OF ADVISORY COUNCIL 1345 00:54:42,012 --> 00:54:44,047 FOR THEIR REVIEW PRIOR TO THIS 1346 00:54:44,114 --> 00:54:44,314 MEETING. 1347 00:54:44,381 --> 00:54:47,517 OF COURSE, AS I MENTIONED 1348 00:54:47,584 --> 00:54:50,553 STEPHANIE BUREAUS WILL PRESENT 1349 00:54:50,620 --> 00:54:52,922 THE DRAFT PLAN AND WELCOME INPUT 1350 00:54:52,989 --> 00:54:55,025 AND COMMENTS ABOUT THAT AT THAT 1351 00:54:55,091 --> 00:54:56,960 TIME AND THAT CONCLUDES MY 1352 00:54:57,027 --> 00:54:57,227 COMMENTS. 1353 00:54:57,293 --> 00:54:58,928 I WOULD BE HAPPY TO TAKE ANY 1354 00:54:58,995 --> 00:55:00,697 QUESTIONS YOU MAY HAVE. I WILL 1355 00:55:00,764 --> 00:55:04,067 GO DOWN AND SIT AROUND THE 1356 00:55:04,134 --> 00:55:04,734 TABLE. 1357 00:55:04,801 --> 00:55:06,903 EVERYTHING IS OPEN. QUESTIONS 1358 00:55:06,970 --> 00:55:09,406 ABOUT MY COMMENTS AND ABOUT NEW 1359 00:55:09,472 --> 00:55:14,411 TOPICS BUT WOULD LIKE TO DEFER 1360 00:55:14,477 --> 00:55:16,880 SUBSEQUENT DISCUSSION ABOUT 1361 00:55:16,946 --> 00:55:18,648 STRATEGIC PLAN UNTIL AFTER 1362 00:55:18,715 --> 00:55:19,549 STEPHANIE'S PRESENTATION. 1363 00:55:19,616 --> 00:55:23,186 >> LINDSEY COMING BACK TO THE 1364 00:55:23,253 --> 00:55:25,855 TABLE NEWEST COUNSELOR KARL 1365 00:55:25,922 --> 00:55:28,124 JEPSON JOINED US AND WOULD LIKE 1366 00:55:28,191 --> 00:55:30,493 TO GIVE HIM A CHANCE TO 1367 00:55:30,560 --> 00:55:30,994 INTRODUCE HIMSELF. 1368 00:55:31,061 --> 00:55:32,562 >> GOOD MORNING. THANK YOU FOR 1369 00:55:32,629 --> 00:55:36,332 THE INTRODUCTION AND ALL OF THE 1370 00:55:36,399 --> 00:55:39,169 KIND WORDS I APPRECIATE T I'M A 1371 00:55:39,235 --> 00:55:40,837 NEW MEMBER OF THE COUNCIL TEAM 1372 00:55:40,904 --> 00:55:44,507 AND HAPPY TO BE HERE AND I'M A 1373 00:55:44,574 --> 00:55:51,047 PROFESSOR OF ORTHOPEDIC SURGERY 1374 00:55:51,114 --> 00:55:52,248 AND BIOLOGIC [INDISCERNIBLE] AND 1375 00:55:52,315 --> 00:55:54,184 RESEARCH FOR MEDICAL SCHOOL. 1376 00:55:54,250 --> 00:55:55,452 >> WELCOME AND THANKS SO MUCH 1377 00:55:55,518 --> 00:55:57,721 FOR JOINING US AND SORRY IF I 1378 00:55:57,787 --> 00:55:59,956 MISSED YOU EARLIER ON I WAS 1379 00:56:00,023 --> 00:56:03,159 SCANNING AND LOOKING AROUND THE 1380 00:56:03,226 --> 00:56:04,794 SQUARES HERE. 1381 00:56:04,861 --> 00:56:07,630 SO, WE HAVE SET ASIDE ANOTHER 20 1382 00:56:07,697 --> 00:56:10,366 MINUTES TO TAKE QUESTIONS AND 1383 00:56:10,433 --> 00:56:14,404 ANSWERS AND ANY DISCUSSION 1384 00:56:14,471 --> 00:56:16,740 TOPICS. 1385 00:56:16,806 --> 00:56:18,675 DARREN TURNED OFF MY CAMERA. 1386 00:56:18,742 --> 00:56:21,144 LET ME TURN IT BACK ON. 1387 00:56:21,211 --> 00:56:24,047 HELLO, EVERYBODY. 1388 00:56:24,114 --> 00:56:25,982 OKAY. HAPPY TO TAKE YOUR 1389 00:56:26,049 --> 00:56:27,517 QUESTIONS OR COMMENTS OR NEW 1390 00:56:27,584 --> 00:56:30,620 TOPICS FOR DISCUSSION AT THIS 1391 00:56:30,687 --> 00:56:34,657 TI 1392 00:56:34,724 --> 00:56:34,958 TIME. 1393 00:56:35,024 --> 00:56:37,026 WE WILL KEEP EYE ON BOARD IN 1394 00:56:37,093 --> 00:56:39,195 FRONT OF US AND THOSE 1395 00:56:39,262 --> 00:56:40,930 PARTICIPATING ONLINE, PLEASE 1396 00:56:40,997 --> 00:56:43,032 RAISE YOUR ZOOM HAND AND PICTURE 1397 00:56:43,099 --> 00:56:45,135 WILL MOVE TO UPPER LEFT CORNER 1398 00:56:45,201 --> 00:56:45,335 HERE. 1399 00:56:45,401 --> 00:56:55,912 WE WILL BE ABLE TO SEE THAT. 1400 00:56:57,714 --> 00:57:02,485 >> I LIKED HEARING ABOUT THE 1401 00:57:02,552 --> 00:57:04,821 COMPLEMENTARY PROGRAM AND THINK 1402 00:57:04,888 --> 00:57:06,156 IT RESONATES WELL WITH SOME 1403 00:57:06,222 --> 00:57:08,124 THINGS IN THE FDA MODERNIZATION 1404 00:57:08,191 --> 00:57:10,059 ACT THAT WERE SIGNED IN 2022 1405 00:57:10,126 --> 00:57:12,395 THAT IS TO SAY THAT YOU CAN 1406 00:57:12,462 --> 00:57:13,730 ADVANCE A PROGRAM OF DRUG 1407 00:57:13,797 --> 00:57:15,031 DEVELOPMENT AND DON'T NEED TO 1408 00:57:15,098 --> 00:57:18,768 USE ANIMAL MODELS. 1409 00:57:18,835 --> 00:57:20,170 AS SOMEBODY THAT SPENT A LOT OF 1410 00:57:20,236 --> 00:57:22,839 TIME REVIEWING AND ON PANELS AND 1411 00:57:22,906 --> 00:57:23,940 THINGS LIKE THAT, I'M STRUCK 1412 00:57:24,007 --> 00:57:26,109 THAT WE ARE -- WE HAVE LOTS OF 1413 00:57:26,176 --> 00:57:27,877 EDUCATION TO DO WITH REVIEWING 1414 00:57:27,944 --> 00:57:30,413 PANELS AND WILL SAY I'M EDITOR 1415 00:57:30,480 --> 00:57:34,083 OF A JOURNAL AND SEE AMONG 1416 00:57:34,150 --> 00:57:36,052 REVIEWERS THERE WE HAVE TO DO 1417 00:57:36,119 --> 00:57:37,287 EDUCATION PROGRAM AND GET PEOPLE 1418 00:57:37,353 --> 00:57:39,322 TO REALLY UNDERSTAND WHAT ARE 1419 00:57:39,389 --> 00:57:41,825 DIFFERENT OPPORTUNITIES THAT ARE 1420 00:57:41,891 --> 00:57:43,726 ALTERNATIVES THAT ARE 1421 00:57:43,793 --> 00:57:44,661 COMPLEMENTARY TO ANIMAL 1422 00:57:44,727 --> 00:57:47,530 RESEARCH? I FEEL WE ARE IN 1423 00:57:47,597 --> 00:57:49,165 DEFICIENCY AND LOTS OF REVIEWERS 1424 00:57:49,232 --> 00:57:51,868 NOW OF NOT REALLY UNDERSTANDING 1425 00:57:51,935 --> 00:57:53,903 WHAT ARE PITFALLS OF USING SOME 1426 00:57:53,970 --> 00:57:55,438 APPROACHES AND WHAT IS THE POWER 1427 00:57:55,505 --> 00:57:57,774 OF USING THOSE AND DON'T KNOW IF 1428 00:57:57,841 --> 00:57:58,875 THERE HAS BEEN DISCUSSION OR 1429 00:57:58,942 --> 00:58:00,009 THOUGHT ABOUT THAT PROCESS HOW 1430 00:58:00,076 --> 00:58:02,345 WE CAN DO BETTER AND KNOW FROM 1431 00:58:02,412 --> 00:58:04,147 MY END AS A JOURNAL EDITOR I'M 1432 00:58:04,214 --> 00:58:06,549 THINKING ABOUT HOW TO GET PEOPLE 1433 00:58:06,616 --> 00:58:07,750 TO WRITE POSITION PIECES AND 1434 00:58:07,817 --> 00:58:09,352 IMPROVE EDUCATION ON THIS. 1435 00:58:09,419 --> 00:58:11,120 RIGHT NOW THERE IS A REAL 1436 00:58:11,187 --> 00:58:13,456 DISCONNECT IN TERMS WHAT IS 1437 00:58:13,523 --> 00:58:14,424 GETTING REVIEWED AND WHAT IS 1438 00:58:14,490 --> 00:58:14,691 POSSIBLE. 1439 00:58:14,757 --> 00:58:16,693 >> THANKS FOR THAT COMMENT. 1440 00:58:16,759 --> 00:58:18,228 MAKES A LOT OF SENSE AND 1441 00:58:18,294 --> 00:58:19,462 APPRECIATE YOU HIGHLIGHTING THAT 1442 00:58:19,529 --> 00:58:23,433 AND I'M THINKING THAT I WONDER 1443 00:58:23,499 --> 00:58:26,970 WHAT OPPORTUNITIES EXIST THROUGH 1444 00:58:27,036 --> 00:58:30,340 CSR IF THAT BECOMES AN APPARENT 1445 00:58:30,406 --> 00:58:32,475 NEED, PARTICULARLY WITH THIS NEW 1446 00:58:32,542 --> 00:58:33,476 EMPHASIS FOR SOME TRAINING. 1447 00:58:33,543 --> 00:58:36,779 YOU KNOW, I MEAN, CSR SECTION 1448 00:58:36,846 --> 00:58:37,947 MEMBERS RECEIVE TRAINING IN A 1449 00:58:38,014 --> 00:58:40,149 NUMBER OF AREAS AND MIGHT BE AN 1450 00:58:40,216 --> 00:58:43,686 IDEA THERE AND DON'T KNOW IF 1451 00:58:43,753 --> 00:58:47,357 KATHY IS WITH US BUT, KATHY HAVE 1452 00:58:47,423 --> 00:58:50,927 ANY COMMENTS ABOUT THIS IN TERMS 1453 00:58:50,994 --> 00:58:55,198 OF A PRECEDENT FOR PROVIDING IN 1454 00:58:55,265 --> 00:58:57,467 A SENSE KIND OF EDUCATIONAL OR 1455 00:58:57,533 --> 00:58:58,668 OTHER INFORMATION ABOUT NEW 1456 00:58:58,735 --> 00:59:00,603 AREAS OF SCIENCE THAT IS 1457 00:59:00,670 --> 00:59:01,838 INCREASINGLY RELEVANT TO 1458 00:59:01,905 --> 00:59:02,972 APPLICATIONS WE ARE SEEING FOR 1459 00:59:03,039 --> 00:59:05,375 WHICH REVIEWERS, YOU KNOW, MAY 1460 00:59:05,441 --> 00:59:10,380 NOT BE, YOU KNOW, AS INFORMED 1461 00:59:10,446 --> 00:59:10,613 ABOUT? 1462 00:59:10,680 --> 00:59:12,048 >> I'M THINKING TISSUE 1463 00:59:12,115 --> 00:59:14,550 ENGINEERING AND THINGS ALONG 1464 00:59:14,617 --> 00:59:14,884 THOSE LINES. 1465 00:59:14,951 --> 00:59:17,020 >> WHAT KATHY MIGHT BE SAYING IS 1466 00:59:17,086 --> 00:59:19,255 IT IS A GENERAL PHENOMENON. 1467 00:59:19,322 --> 00:59:19,522 >> YEAH. 1468 00:59:19,589 --> 00:59:22,725 >> NOTTUS REVIEW YOU ELUDED TO. 1469 00:59:22,792 --> 00:59:23,159 >> YEAH. 1470 00:59:23,226 --> 00:59:25,228 >> I DO ACTUALLY TAKE YOUR POINT 1471 00:59:25,295 --> 00:59:28,965 THAT THESE ARE NEW WAYS OF DOING 1472 00:59:29,032 --> 00:59:30,066 THINGS AND HOPEFULLY NOT 1473 00:59:30,133 --> 00:59:32,535 SPEAKING FOR MYSELF AND SOME 1474 00:59:32,602 --> 00:59:34,037 PEOPLE HAVE A HARD TIME SHIFTING 1475 00:59:34,103 --> 00:59:36,072 TO NEW WAYS OF DOING THINGS. 1476 00:59:36,139 --> 00:59:40,543 I DO THINK THAT THIS IS A MORE 1477 00:59:40,610 --> 00:59:42,078 GENERAL ISSUE. 1478 00:59:42,145 --> 00:59:46,382 THERE IS A LOT OF ROOM CERTAINLY 1479 00:59:46,449 --> 00:59:50,386 IN -- YOU SAW IDEAS THAT WE 1480 00:59:50,453 --> 00:59:51,988 SUPPORT TISSUE ON CHIMP RESEARCH 1481 00:59:52,055 --> 00:59:55,725 AND SUPPORTED STUDIES OF OA ON A 1482 00:59:55,792 --> 00:59:57,860 CHIP AND OSTEOARTHRITIS AND A 1483 00:59:57,927 --> 00:59:59,629 CHIP AND I WILL SAY SPEAKING 1484 00:59:59,696 --> 01:00:00,997 FROM MYSELF TO SOMETIMES IT IS 1485 01:00:01,064 --> 01:00:02,999 HARD TO REALLY KNOW WHAT 1486 01:00:03,066 --> 01:00:04,968 STRENGTHS AND WEAKNESSES AND 1487 01:00:05,034 --> 01:00:05,635 APPROACHES ARE. 1488 01:00:05,702 --> 01:00:09,472 I DON'T HAVE A GOOD ANSWER. 1489 01:00:09,539 --> 01:00:11,741 I COMPLETELY AGREE WITH YOUR 1490 01:00:11,808 --> 01:00:12,175 POINT. 1491 01:00:12,241 --> 01:00:14,243 >> GREAT. TED HAS A COMMENT 1492 01:00:14,310 --> 01:00:14,444 HERE. 1493 01:00:14,510 --> 01:00:17,347 >> YEAH. RECENTLY WE PUBLISHED 1494 01:00:17,413 --> 01:00:21,617 NO SEE WITH NATIONAL INSTITUTES 1495 01:00:21,684 --> 01:00:23,519 OF AGING AND PURPOSE OF NO SEE 1496 01:00:23,586 --> 01:00:25,488 IS ENCOURAGE COMMUNITY TO USE 1497 01:00:25,555 --> 01:00:31,027 AND UTILIZE MODEL TO STUDY 1498 01:00:31,094 --> 01:00:33,930 OSTEOARTHRITIS AND EMPHASIZE 1499 01:00:33,997 --> 01:00:37,100 TISSUE AND CHIMP CELL MODEL 1500 01:00:37,166 --> 01:00:39,202 OTHER THAN TRADITIONAL ANIMAL 1501 01:00:39,268 --> 01:00:39,435 MODEL. 1502 01:00:39,502 --> 01:00:42,038 >> THANK YOU. THIS IS GREAT TO 1503 01:00:42,105 --> 01:00:44,240 HAVE MANY NIAMS REPRESENTATIVES 1504 01:00:44,307 --> 01:00:46,442 AND NO SEE REFERS TO NOTICE OF 1505 01:00:46,509 --> 01:00:47,443 SPECIAL INTEREST AND IMAGINE 1506 01:00:47,510 --> 01:00:49,712 THAT THERE WILL BE GREAT 1507 01:00:49,779 --> 01:00:52,648 PUBLICATIONS THAT COME OUT AS A 1508 01:00:52,715 --> 01:00:55,184 RESULT OF WORK OF 1509 01:00:55,251 --> 01:00:56,452 COMPLEMENTARYIAN EFFORTS AND 1510 01:00:56,519 --> 01:00:59,188 SEEING EARLY ADOPTERS PUTTING IN 1511 01:00:59,255 --> 01:01:00,323 APPLICATIONS AND NOT FAREWELL 1512 01:01:00,390 --> 01:01:03,092 BECAUSE OF TRADITIONAL THINKING. 1513 01:01:03,159 --> 01:01:04,827 ANYWAY, YEAH. IT WOULD BE 1514 01:01:04,894 --> 01:01:06,596 INTERESTING TO FIND OUT WHAT 1515 01:01:06,662 --> 01:01:08,064 PLANS THERE ARE FOR BROADER 1516 01:01:08,131 --> 01:01:09,866 COMMUNICATION AND EDUCATION OF 1517 01:01:09,932 --> 01:01:11,801 THE COMMUNITY AND THANK YOU FOR 1518 01:01:11,868 --> 01:01:12,402 HIGHLIGHTING THAT. 1519 01:01:12,468 --> 01:01:15,071 >> DO YOU HAVE SUGGESTIONS? 1520 01:01:15,138 --> 01:01:15,505 >> YEAH. 1521 01:01:15,571 --> 01:01:19,075 >> WELL, I MEAN, WE HAVE 1522 01:01:19,142 --> 01:01:21,044 MUSCULAR DISTROPHY ASSOCIATION 1523 01:01:21,110 --> 01:01:23,112 GRANT REVIEWS NEXT WEEK AND ASK 1524 01:01:23,179 --> 01:01:25,348 TO PUT ASIDE TIME TO TALK ABOUT 1525 01:01:25,415 --> 01:01:27,750 THIS AT GRANT REVIEW PANEL TO 1526 01:01:27,817 --> 01:01:29,252 EDUCATE PEOPLE AND WEARING 1527 01:01:29,318 --> 01:01:30,853 JOURNAL EDITOR HAT THAT IS WHERE 1528 01:01:30,920 --> 01:01:33,022 WE CAN PROBABLY MAKE BIGGEST 1529 01:01:33,089 --> 01:01:34,857 DIFFERENCE THAT IS MAKING IT 1530 01:01:34,924 --> 01:01:37,860 CLEAR THAT WE DO -- WE DON'T 1531 01:01:37,927 --> 01:01:41,230 NEED TO DO EVERYTHING IN MOUSE. 1532 01:01:41,297 --> 01:01:42,965 HUMANS ARE LARGELY TRYING TO 1533 01:01:43,032 --> 01:01:45,068 MODEL AND HUMAN CELL MODELS, 1534 01:01:45,134 --> 01:01:47,036 THERE IS VALUE TO THAT AND ALONG 1535 01:01:47,103 --> 01:01:50,973 WITH THAT COMES RIGOR AND 1536 01:01:51,040 --> 01:01:52,408 REPRODUCIBILITY AROUND HUMAN 1537 01:01:52,475 --> 01:01:54,777 VARIABILITY THAT BECOMES HARDEST 1538 01:01:54,844 --> 01:01:56,779 PART ABOUT DOG HUMAN CELL MODEL 1539 01:01:56,846 --> 01:02:01,784 AND WE HAVE LOTS TO DO AND 1540 01:02:01,851 --> 01:02:02,819 TEACH. 1541 01:02:02,885 --> 01:02:03,953 >> GREAT. 1542 01:02:04,020 --> 01:02:04,787 >> DR. [INDISCERNIBLE]. 1543 01:02:04,854 --> 01:02:06,522 >> KEY EXAMPLE OF THAT WOULD BE 1544 01:02:06,589 --> 01:02:12,895 HOW NIH IS NOW TRAINING OR 1545 01:02:12,962 --> 01:02:14,063 ADVISE REVIEWERS AND WE HAVE PUT 1546 01:02:14,130 --> 01:02:16,566 OUT NEW PROGRAMS TO INFORM 1547 01:02:16,632 --> 01:02:19,001 REVIEWERS ON CHANGING HOW WE 1548 01:02:19,068 --> 01:02:19,502 REVIEW IT. 1549 01:02:19,569 --> 01:02:21,070 WE HAVE DONE EFFECTIVE PROGRAMS 1550 01:02:21,137 --> 01:02:22,972 WITH THAT AND IT WOULD BE A 1551 01:02:23,039 --> 01:02:24,907 GREAT IDEA TO MAKE MODIFICATIONS 1552 01:02:24,974 --> 01:02:28,177 TO CSR DUE TO A SIMILAR 1553 01:02:28,244 --> 01:02:28,444 TRAINING. 1554 01:02:28,511 --> 01:02:30,379 >> YEAH. THANK YOU. WE WILL 1555 01:02:30,446 --> 01:02:32,615 BRING A CHAIR OVER SO WE DON'T 1556 01:02:32,682 --> 01:02:37,019 WANT ANY INJURED KNEES AT END OF 1557 01:02:37,086 --> 01:02:40,056 THE COUNCIL MEETING. 1558 01:02:40,123 --> 01:02:42,058 SO YEAH. MARIA? 1559 01:02:42,125 --> 01:02:45,027 >> YEAH. THANK YOU, NANCY FOR A 1560 01:02:45,094 --> 01:02:46,596 WONDERFUL PRESENTATION AND 1561 01:02:46,662 --> 01:02:48,731 DELIGHTED TO SEE NEW INITIATIVES 1562 01:02:48,798 --> 01:02:50,133 MOVING FORWARD AND WONDERING IF 1563 01:02:50,199 --> 01:02:52,401 YOU COULD ELABORATE A LITTLE BIT 1564 01:02:52,468 --> 01:02:53,970 ON PROCESS TO RECOMMEND FUNDING 1565 01:02:54,036 --> 01:02:56,239 FOR THOSE APPLICATIONS THAT WILL 1566 01:02:56,305 --> 01:03:00,209 BE ABOVE THE PAY LINE. 1567 01:03:00,276 --> 01:03:03,179 >> YEAH. SO I GUESS ONE THING I 1568 01:03:03,246 --> 01:03:08,417 WILL CLARIFY IS WE ARE CALLING 1569 01:03:08,484 --> 01:03:11,721 THAT PROCESS SELECT PAY 1570 01:03:11,787 --> 01:03:14,123 COMPLEMENT TO IT IS 1571 01:03:14,190 --> 01:03:17,093 COMPLEMENTARY TO THE PAYLINE 1572 01:03:17,160 --> 01:03:19,028 DRIVEN APPROACH AND NIAMS HAD A 1573 01:03:19,095 --> 01:03:21,197 SELECT PAY IN SENSE THAT AT END 1574 01:03:21,264 --> 01:03:24,433 OF EVERY FISCAL YEAR FUNDS FLOW 1575 01:03:24,500 --> 01:03:27,203 BACK FROM INSTITUTE AND 1576 01:03:27,270 --> 01:03:29,071 INVESTIGATOR LEAVES ACADEMIC 1577 01:03:29,138 --> 01:03:30,907 INSTITUTE OR WHATEVER AND CAN'T 1578 01:03:30,973 --> 01:03:32,742 CARRY FORWARD FUNDS AND HAVE TO 1579 01:03:32,808 --> 01:03:33,976 SPEND EVERY PENNY WE HAVE 1580 01:03:34,043 --> 01:03:35,778 OTHERWISE WE HAVE A PROBLEM AND 1581 01:03:35,845 --> 01:03:38,714 ALWAYS AT END OF THE FISCAL 1582 01:03:38,781 --> 01:03:41,817 YEAR, APPLICATIONS WERE 1583 01:03:41,884 --> 01:03:43,085 IDENTIFIED FOR SELECT PAY 1584 01:03:43,152 --> 01:03:45,188 TYPICALLY ON BASIS OF AN EARLY 1585 01:03:45,254 --> 01:03:48,524 CAREER INVESTIGATOR AND AT-RISK 1586 01:03:48,591 --> 01:03:51,327 INVESTIGATOR AND HIGH PRIORITY 1587 01:03:51,394 --> 01:03:53,563 AREA BIG GAP IN PORTFOLIO AND 1588 01:03:53,629 --> 01:03:55,998 THAT SORT OF THING AND 1589 01:03:56,065 --> 01:03:57,300 UNPREDICTABLE AND SMALL AMOUNT 1590 01:03:57,366 --> 01:03:59,068 OF FUNDS ONLY AT END OF THE 1591 01:03:59,135 --> 01:04:01,404 FISCAL YEAR AND WAS A SCRAMBLE 1592 01:04:01,470 --> 01:04:03,573 BECAUSE OF THE LAST-MINUTE 1593 01:04:03,639 --> 01:04:05,942 NATURE OF IT AND NOW WE ARE 1594 01:04:06,008 --> 01:04:07,143 SPREADING OUT SELECT PAY TO 3 1595 01:04:07,210 --> 01:04:09,212 TIMES A YEAR FOLLOWING EACH 1596 01:04:09,278 --> 01:04:10,313 COUNCIL MEETING. 1597 01:04:10,379 --> 01:04:15,251 YOU ALL SIGN OFF ON THE SLATE OF 1598 01:04:15,318 --> 01:04:16,719 APPLICATIONS AND THE DECISIONS 1599 01:04:16,786 --> 01:04:20,756 ARE MADE IN THE CONTEXT OF TEAMS 1600 01:04:20,823 --> 01:04:24,026 OF RELATED PROGRAMS, SKIN OR 1601 01:04:24,093 --> 01:04:30,132 MUSCLE OR ARTHRITIS ON BASIS OF 1602 01:04:30,199 --> 01:04:32,735 INVESTIGATOR AND IS IT EARLY 1603 01:04:32,802 --> 01:04:36,272 CAREER INVESTIGATAR OR AT-RISK 1604 01:04:36,339 --> 01:04:37,206 INVESTIGATOR WHOSE LAB MAY CLOSE 1605 01:04:37,273 --> 01:04:38,708 DOWN WITHOUT A FUNDED 1606 01:04:38,774 --> 01:04:39,976 APPLICATION AND DOES IT ADDRESS 1607 01:04:40,042 --> 01:04:42,845 A PRIORITY AREA WE HAVE 1608 01:04:42,912 --> 01:04:45,014 HIGHLIGHTED IN STRATEGIC PLAN OR 1609 01:04:45,081 --> 01:04:47,883 NOTICE OF SPECIAL INTEREST AND 1610 01:04:47,950 --> 01:04:50,720 GAP AREA WE IDENTIFIED. 1611 01:04:50,786 --> 01:04:52,455 THOSE ARE THE MAIN CATEGORIES 1612 01:04:52,521 --> 01:04:56,259 AND AM I MISSING A MAJOR 1613 01:04:56,325 --> 01:04:57,793 CATEGORY? 1614 01:04:57,860 --> 01:05:00,029 THOSE ARE MAIN THINGS. 1615 01:05:00,096 --> 01:05:01,731 YEAH. WE WANT TO EMPHASIZE THE 1616 01:05:01,797 --> 01:05:06,302 FACT THAT, YOU KNOW, KIND OF THE 1617 01:05:06,369 --> 01:05:09,272 PORTFOLIOS ACROSS INSTITUTE ARE 1618 01:05:09,338 --> 01:05:10,506 SOMEWHAT DIFFERENT AND SOME 1619 01:05:10,573 --> 01:05:12,708 PORTFOLIOS HAVE A POSITY OF 1620 01:05:12,775 --> 01:05:14,644 EARLY CAREER INVESTIGATORS AND 1621 01:05:14,710 --> 01:05:16,579 PROGRAM MANAGERS ARE THINKING 1622 01:05:16,646 --> 01:05:18,114 ABOUT MAKING SURE WE CONTINUE TO 1623 01:05:18,180 --> 01:05:20,283 HAVE INVESTIGATORS MOVING INTO 1624 01:05:20,349 --> 01:05:21,917 THE FIELD AND OTHER AREAS HAVE 1625 01:05:21,984 --> 01:05:25,454 DIFFERENT ISSUES AND MAY BE BIG 1626 01:05:25,521 --> 01:05:27,723 GAPS IN PORTFOLIO AND POSITY OF 1627 01:05:27,790 --> 01:05:29,759 FUNDING FOR VARIOUS REASONS AND 1628 01:05:29,825 --> 01:05:31,227 HAVEN'T BROUGHT IN RIGHT 1629 01:05:31,294 --> 01:05:32,461 INVESTIGATORS AND MIGHT BE 1630 01:05:32,528 --> 01:05:34,497 MISSING RIGHT TOOLS WE NEED AND 1631 01:05:34,563 --> 01:05:36,165 MIGHT BE A CONCERN ABOUT THE 1632 01:05:36,232 --> 01:05:37,733 REVIEWED PROCESS AND THOSE 1633 01:05:37,800 --> 01:05:39,769 APPLICATIONS NOT BEING REVIEWED 1634 01:05:39,835 --> 01:05:40,069 CAREFULLY. 1635 01:05:40,136 --> 01:05:41,971 SO THOSE ARE THINGS AND OF 1636 01:05:42,038 --> 01:05:43,673 COURSE SCORE IS CONSIDERED AS 1637 01:05:43,739 --> 01:05:47,843 PART OF SELECT PAY AS WELL. 1638 01:05:47,910 --> 01:05:51,247 WE HAVE QUESTIONS ABOUT HOW YOU 1639 01:05:51,314 --> 01:05:57,553 WILL MONITOR THIS AND ASSESS IT 1640 01:05:57,620 --> 01:05:59,121 AND DEVELOP METRICS GROUP 1641 01:05:59,188 --> 01:06:00,823 INCLUDING FOLKS FROM BUDGET AND 1642 01:06:00,890 --> 01:06:03,292 PROGRAM LEADERSHIP TO TRY TO 1643 01:06:03,359 --> 01:06:07,330 IDENTIFY METRICS ALLOWING US TO 1644 01:06:07,396 --> 01:06:09,832 FOLLOW OUR BROADLY OUR FUNDING 1645 01:06:09,899 --> 01:06:11,367 APPROACH AND WHAT IS HAPPENING 1646 01:06:11,434 --> 01:06:14,203 WITH SELECT PAY AND WHAT ARE 1647 01:06:14,270 --> 01:06:17,740 IMPACTS OF THE NEW POLICY 1648 01:06:17,807 --> 01:06:19,942 RELATED TO INVESTIGATORS WITH 1649 01:06:20,009 --> 01:06:21,711 MORE THAN THREE REWARDS AND ABLE 1650 01:06:21,777 --> 01:06:23,913 TO MAINTAIN SAME NUMBER OF 1651 01:06:23,979 --> 01:06:26,349 AWARDS FROM YEAR TO YEAR AS 1652 01:06:26,415 --> 01:06:27,183 BUDGETS EVOLVE. 1653 01:06:27,249 --> 01:06:28,884 >> METRICS AFTER AWARDS HAVE 1654 01:06:28,951 --> 01:06:29,819 BEEN GIVEN, I GUESS. 1655 01:06:29,885 --> 01:06:32,288 I WAS WONDERING AS FAR AS THE 1656 01:06:32,355 --> 01:06:34,023 SELECTION OF THOSE GRANTS, IT 1657 01:06:34,090 --> 01:06:36,325 HAS BEEN -- I MEAN, IN THE PAST 1658 01:06:36,392 --> 01:06:38,327 IT HAS BEEN QUALITATIVE WITH 1659 01:06:38,394 --> 01:06:39,729 REMAINING FUNDS AS YOU MENTIONED 1660 01:06:39,795 --> 01:06:42,598 AND THAT PROCESS IS NOT 1661 01:06:42,665 --> 01:06:42,865 CHANGING. 1662 01:06:42,932 --> 01:06:44,533 IT WILL BE QUALITATIVE 1663 01:06:44,600 --> 01:06:46,902 ASSESSMENT OF WHAT THE NEEDS. 1664 01:06:46,969 --> 01:06:49,905 >> WELL, THIS -- THIS -- THE 1665 01:06:49,972 --> 01:06:51,774 IDENTIFIED -- SO, THE GRANTS GET 1666 01:06:51,841 --> 01:06:54,777 REVIEWED AND SCORES COME TO US 1667 01:06:54,844 --> 01:06:57,346 AND THEN WE ARE EVALUATING 1668 01:06:57,413 --> 01:06:59,014 BUDGET AND WHAT PAY LINE CAN BE 1669 01:06:59,081 --> 01:07:02,785 AND WE ARE SETTING ASIDE FUNDS 1670 01:07:02,852 --> 01:07:04,487 FOR EACH ROUND FOR SELECT PAY 1671 01:07:04,553 --> 01:07:07,223 AND INDIVIDUAL PROGRAM OFFICERS 1672 01:07:07,289 --> 01:07:09,859 ARE WORKING IN TEAMS NOMINATE 1673 01:07:09,925 --> 01:07:11,193 APPLICATIONS FOR SELECT PAY ON 1674 01:07:11,260 --> 01:07:13,129 BASIS OF THOSE CRITERIA AND WE 1675 01:07:13,195 --> 01:07:14,530 DON'T HAVE A STRICT FORMULA. 1676 01:07:14,597 --> 01:07:16,899 WE THINK WE NEED TO HAVE FLEX 1677 01:07:16,966 --> 01:07:20,302 INLT ACROSS PORTFOLIOS AND IS 1678 01:07:20,369 --> 01:07:22,004 HARD TO -- WHAT IS IMPORTANT? 1679 01:07:22,071 --> 01:07:24,173 THERE IS NOT A STRICT FORMULA 1680 01:07:24,240 --> 01:07:27,309 AND THERE IS CLEAR 1681 01:07:27,376 --> 01:07:29,345 CONSIDERATIONS THAT ARE TEAMS 1682 01:07:29,412 --> 01:07:32,448 THAT CONSIDER IN NOMINATING 1683 01:07:32,515 --> 01:07:33,682 APPLICATIONS FOR SELECT PAY. 1684 01:07:33,749 --> 01:07:37,052 >> MY ONE CONCERN IS ON PART OF 1685 01:07:37,119 --> 01:07:38,053 INVESTIGATORS IF MORE BUDGET 1686 01:07:38,120 --> 01:07:40,456 WILL GO TO SELECT PAY THAN IT 1687 01:07:40,523 --> 01:07:43,192 WAS BEFORE AS PERCENT OF ALL OF 1688 01:07:43,259 --> 01:07:44,527 THE FUNDS MIGHT BE INTEREST IN 1689 01:07:44,593 --> 01:07:46,829 MORE TRANSPARENCY AS TO HOW 1690 01:07:46,896 --> 01:07:47,663 THOSE DECISIONS ARE MADE. 1691 01:07:47,730 --> 01:07:50,032 I WANTED TO COMMENT, YEAH. 1692 01:07:50,099 --> 01:07:53,836 >> YEAH. I GUESS, YOU KNOW, THE 1693 01:07:53,903 --> 01:07:56,138 -- I -- LET ME KNOW. I'M NOT 1694 01:07:56,205 --> 01:07:58,374 SURE WHAT YOU MEAN IN TERMS OF 1695 01:07:58,441 --> 01:07:58,707 TRANSPARENCY. 1696 01:07:58,774 --> 01:08:01,277 PROCESS IS APPLICATIONS ARE 1697 01:08:01,343 --> 01:08:02,578 REVIEWED AT CSR. 1698 01:08:02,645 --> 01:08:04,480 AND THEN SCORES COME TO US AND 1699 01:08:04,547 --> 01:08:06,749 THEY GET DIVIDED INTO TEAMS 1700 01:08:06,816 --> 01:08:10,686 BASED ON TOPIC AREA. 1701 01:08:10,753 --> 01:08:13,088 WE ARE INTERACING WITH BUDGET TO 1702 01:08:13,155 --> 01:08:14,723 FIND OUT HOW MUCH MONEY WE HAVE 1703 01:08:14,790 --> 01:08:17,326 AND TEAMS SIT DOWN AND GO 1704 01:08:17,393 --> 01:08:18,694 THROUGH APPLICATIONS THAT DON'T 1705 01:08:18,761 --> 01:08:19,962 NEED PAY LINE AND CONSIDER ARE 1706 01:08:20,029 --> 01:08:23,199 ANY OF THESE INVESTIGATORS AT 1707 01:08:23,265 --> 01:08:23,632 RISK? 1708 01:08:23,699 --> 01:08:26,101 ARE ANY EARLY CAREER 1709 01:08:26,168 --> 01:08:28,037 INVESTIGATORS OR AT-RISK 1710 01:08:28,103 --> 01:08:28,971 INVESTIGATORS OR ANY 1711 01:08:29,038 --> 01:08:30,206 APPLICATIONS IN RESPONSE TO NO 1712 01:08:30,272 --> 01:08:32,308 SEES WE PUBLISH OR ARE 1713 01:08:32,374 --> 01:08:33,375 ADVERTISING THAT ARE IN INTEREST 1714 01:08:33,442 --> 01:08:34,743 OF THIS AREA? 1715 01:08:34,810 --> 01:08:36,979 I WILL BASE IT ON THAT AND THEY 1716 01:08:37,046 --> 01:08:38,314 ARE CHALLENGING DECISIONS TO 1717 01:08:38,380 --> 01:08:38,547 MAKE. 1718 01:08:38,614 --> 01:08:41,417 MAIN PROBLEM WE HAVE IS WE HAVE 1719 01:08:41,484 --> 01:08:43,486 RELATIVELY MODEST FUNDS THAT ARE 1720 01:08:43,552 --> 01:08:45,287 COMPARED TO OUR MISSIONARIES AND 1721 01:08:45,354 --> 01:08:47,156 I VIEW -- I QUOTED THIS FIGURE 1722 01:08:47,223 --> 01:08:48,691 MANY TIMES. 1723 01:08:48,757 --> 01:08:50,793 ROUGHLY 3% OF R01 APPLICATIONS 1724 01:08:50,860 --> 01:08:53,696 SENT TO THE NIH COME TO NIAMS 1725 01:08:53,762 --> 01:08:55,631 AND BUDGET ALLOCATIONS ARE MORE 1726 01:08:55,698 --> 01:08:56,899 THAN 1.5%. 1727 01:08:56,966 --> 01:08:59,301 WE ARE CHALLENGED RIGHT OFF THE 1728 01:08:59,368 --> 01:09:02,605 BAT WITH HAVING TOO MANY STRONG 1729 01:09:02,671 --> 01:09:03,639 APPLICATIONS THAT WE WOULD LIKE 1730 01:09:03,706 --> 01:09:07,676 TO FUND THAT WE -- WE CAN'T. 1731 01:09:07,743 --> 01:09:11,514 AND WE THINK THAT BECAUSE OF 1732 01:09:11,580 --> 01:09:14,550 THOSE VERY SIGNIFICANT 1733 01:09:14,617 --> 01:09:16,519 STRENGTHS, IT SPEAKS MORE TO THE 1734 01:09:16,585 --> 01:09:19,154 NEED FOR SELECT PAY TO HAVE SOME 1735 01:09:19,221 --> 01:09:21,690 FLEX INLT AND OTHERWISE CSR IS 1736 01:09:21,757 --> 01:09:22,825 BASICALLY MAKING ALL DECISIONS 1737 01:09:22,892 --> 01:09:25,027 FOR US IF WE JUST USE THE SCORE. 1738 01:09:25,094 --> 01:09:27,062 >> I MEAN, I THINK IT WOULD BE 1739 01:09:27,129 --> 01:09:29,064 USEFUL TO HAVE AND YOU WOULD 1740 01:09:29,131 --> 01:09:30,299 HAVE IT ALREADY PUBLISHED AND 1741 01:09:30,366 --> 01:09:32,234 HAVE A LIST OF CRITERIA THAT ARE 1742 01:09:32,301 --> 01:09:34,436 USED FOR THIS AND THEY ARE 1743 01:09:34,503 --> 01:09:36,505 PUBLISHED. YOU KNOW, WHEN THE 1744 01:09:36,572 --> 01:09:39,174 AWARD IS FUNDED, EVEN THE 1745 01:09:39,241 --> 01:09:44,580 INVESTIGATOR KNOWS THR01 WAS 1746 01:09:44,647 --> 01:09:46,415 FUNDED BECAUSE OF THIS, THIS, 1747 01:09:46,482 --> 01:09:48,050 AND THAT AND THAT DECISION. 1748 01:09:48,117 --> 01:09:49,652 >> I SECOND THAT AND WHAT MARIA 1749 01:09:49,718 --> 01:09:52,288 WAS SAYING AND SAY THAT SINGLE 1750 01:09:52,354 --> 01:09:53,722 BIGGEST THING I HAVE HAD PEOPLE 1751 01:09:53,789 --> 01:09:55,858 ASK ME ABOUT IN LAST YEAR 1752 01:09:55,925 --> 01:09:57,192 KNOWING I'M ON COUNCIL IS 1753 01:09:57,259 --> 01:09:58,894 EXACTLY THIS TOPIC AND I'M SURE 1754 01:09:58,961 --> 01:10:00,162 EVERYONE IN THE ROOM WILL SAY 1755 01:10:00,229 --> 01:10:01,497 SAME THING. 1756 01:10:01,564 --> 01:10:02,398 MY GOODNESS. 1757 01:10:02,464 --> 01:10:03,832 THEY ARE DOING SELECT PAY. 1758 01:10:03,899 --> 01:10:06,569 I SAY IT IS A VERY SMALL AMOUNT 1759 01:10:06,635 --> 01:10:07,636 OF BUDGET THAT IS MEANT FOR 1760 01:10:07,703 --> 01:10:09,605 THESE THINGS AND IF YOU 1761 01:10:09,672 --> 01:10:11,006 REITERATE THAT MESSAGE AND MAKE 1762 01:10:11,073 --> 01:10:12,808 IT CLEAR TO PEOPLE IT WILL DO A 1763 01:10:12,875 --> 01:10:15,010 LOT TO CALM THE COMMUNITY. 1764 01:10:15,077 --> 01:10:17,446 >> LET ME ADD IN THAT WE 1765 01:10:17,513 --> 01:10:18,781 CERTAINLY, YOU KNOW, PEOPLE GET 1766 01:10:18,847 --> 01:10:20,883 A GRANT AWARD AND ARE ENCOURAGED 1767 01:10:20,950 --> 01:10:22,985 TO TALK TO THEIR PROGRAM OFFICER 1768 01:10:23,052 --> 01:10:24,219 AND ASK THEM ABOUT THAT. 1769 01:10:24,286 --> 01:10:26,989 WE ARE LIMITED INTO DATA WE CAN 1770 01:10:27,056 --> 01:10:29,291 PUBLISH. WE ARE HAPPY TO 1771 01:10:29,358 --> 01:10:31,060 PUBLISH AGGREGATE DATA AND CAN'T 1772 01:10:31,126 --> 01:10:33,696 PUBLISH DATA SAYING WE FUNDED 1773 01:10:33,762 --> 01:10:35,197 THIS GRANT FOR THESE SELECT PAY 1774 01:10:35,264 --> 01:10:36,231 REASONS, FOR INSTANCE. 1775 01:10:36,298 --> 01:10:38,567 THAT CAN BE -- THAT IS 1776 01:10:38,634 --> 01:10:39,068 CONFIDENTIAL. 1777 01:10:39,134 --> 01:10:41,971 WE WILL -- WE DO HAVE PLANS TO 1778 01:10:42,037 --> 01:10:43,939 PUBLISH A LOT OF DATA GOING 1779 01:10:44,006 --> 01:10:46,241 FORWARD AND WOULD LIKE TO HEAR 1780 01:10:46,308 --> 01:10:47,142 YOUR FEEDBACK ABOUT THAT. 1781 01:10:47,209 --> 01:10:49,812 >> YOU KNOW, CORRECT ME IF I'M 1782 01:10:49,878 --> 01:10:50,179 WRONG. 1783 01:10:50,245 --> 01:10:51,714 I BELIEVE WE HAVE ALREADY 1784 01:10:51,780 --> 01:10:53,482 CLARIFIED ON OUR WEBSITE THE 1785 01:10:53,549 --> 01:10:55,784 CONSIDERATIONS THAT APPLY FOR 1786 01:10:55,851 --> 01:10:57,019 SELECT PAY. 1787 01:10:57,086 --> 01:10:59,121 YOU KNOW, WE DON'T SAY YOU HAVE 1788 01:10:59,188 --> 01:11:01,557 TO BE AN EARLY CAREER 1789 01:11:01,624 --> 01:11:02,625 INVESTIGATOR OR ONLY THIS MANY. 1790 01:11:02,691 --> 01:11:05,127 WE -- YOU KNOW, IT IS -- IT IS 1791 01:11:05,194 --> 01:11:06,895 THESE RELATIVELY BROAD 1792 01:11:06,962 --> 01:11:07,196 CATEGORIES. 1793 01:11:07,262 --> 01:11:10,666 YOU KNOW, WE DON'T THINK A 1794 01:11:10,733 --> 01:11:13,035 HIGHLY PRESCRIPTIVE FORMULAIC 1795 01:11:13,102 --> 01:11:16,071 APPROACH WILL WORK. YOU KNOW? 1796 01:11:16,138 --> 01:11:18,073 JEN EES HAS HER HAND UP AND HAS 1797 01:11:18,140 --> 01:11:20,009 A COMMENT ON THIS TOPIC AS WELL. 1798 01:11:20,075 --> 01:11:22,011 >> THANK SO YOU MUCH, LINDSEY, 1799 01:11:22,077 --> 01:11:23,612 FOR YOUR PRESENTATION. 1800 01:11:23,679 --> 01:11:25,214 I APPRECIATE THIS DISCUSSION. 1801 01:11:25,280 --> 01:11:27,349 JUST TWO QUICK QUESTIONS. 1802 01:11:27,416 --> 01:11:28,817 THE FIRST ONE IS WHAT PERCENT OF 1803 01:11:28,884 --> 01:11:32,988 THE BUDGET ARE YOU ANTICIPATING 1804 01:11:33,055 --> 01:11:35,024 WILL BE PART OF SELECT PAY? 1805 01:11:35,090 --> 01:11:36,992 I KNOW YOU MENTIONED 1806 01:11:37,059 --> 01:11:37,326 FLEXIBILITY. 1807 01:11:37,393 --> 01:11:40,796 IS THERE A PERCENTAGE THAT HAS 1808 01:11:40,863 --> 01:11:43,499 BEEN THROWN AROUND. 1809 01:11:43,565 --> 01:11:43,766 >> YEAH. 1810 01:11:43,832 --> 01:11:45,934 >> SECOND QUESTION, WHAT 1811 01:11:46,001 --> 01:11:47,603 INTEGRAL WILL YOU LOOK AT 1812 01:11:47,670 --> 01:11:49,772 METRICS AND SORT OF DECIDE WHAT 1813 01:11:49,838 --> 01:11:54,510 WILL HAPPEN IN THE NEXT YEAR? 1814 01:11:54,576 --> 01:11:59,448 >> SO PERCENT WE SET ASIDE IS 1815 01:11:59,515 --> 01:12:00,249 20%. 1816 01:12:00,315 --> 01:12:05,587 80% GOES TO SUPPORT PAY LINE. 1817 01:12:05,654 --> 01:12:07,556 20% FOR SELECT PAY AND, OF 1818 01:12:07,623 --> 01:12:11,193 COURSE, YOU KNOW, IF -- YOU 1819 01:12:11,260 --> 01:12:16,398 KNOW, OF COURSE THE 8% RELATES 1820 01:12:16,465 --> 01:12:18,867 WHOLLY TO THE AMOUNT OF MONEY 1821 01:12:18,934 --> 01:12:21,203 THAT FLOWS TO NIAMS RELATIVE TO 1822 01:12:21,270 --> 01:12:22,638 APPLICATION NUMBERS ARE YOU 1823 01:12:22,705 --> 01:12:24,640 SEEING AND ALSO PROGRAM OFFICERS 1824 01:12:24,707 --> 01:12:28,544 ARE YOUR PALS FOR INVESTIGATORS 1825 01:12:28,610 --> 01:12:29,545 AND ARE HERE TO SERVE THEM. 1826 01:12:29,611 --> 01:12:31,780 WHEN I TALK TO THEM, THEY FIND 1827 01:12:31,847 --> 01:12:33,549 THAT MOST GRATIFYING AND THEY 1828 01:12:33,615 --> 01:12:35,451 LOVE SCIENCE AND WORKING AT NIH 1829 01:12:35,517 --> 01:12:37,086 AND WANT TO HELP INVESTIGATORS 1830 01:12:37,152 --> 01:12:38,987 AND REASON TO ENCOURAGE 1831 01:12:39,054 --> 01:12:40,856 INVESTIGATORS TO REACH OUT TO 1832 01:12:40,923 --> 01:12:42,124 PROGRAM OFFICERS IS THEY ARE 1833 01:12:42,191 --> 01:12:44,760 WELL AWARE OF SCIENTIFIC OVERLAP 1834 01:12:44,827 --> 01:12:46,495 AND AVAILABILITY AT INSTITUTES 1835 01:12:46,562 --> 01:12:48,397 AND CENTERS AND APPLICATION THAT 1836 01:12:48,464 --> 01:12:50,632 SURE CAN GO TO NIAMS AND ALSO 1837 01:12:50,699 --> 01:12:52,634 COULD GO TO NIA AND IF THEY 1838 01:12:52,701 --> 01:12:55,070 HAPPEN TO HAVE A HIGHER PAY LINE 1839 01:12:55,137 --> 01:12:56,672 OR SPECIAL INTEREST THEY WILL 1840 01:12:56,739 --> 01:12:57,372 ENCOURAGE THEM. 1841 01:12:57,439 --> 01:13:00,476 WE WANT TO ENCOURAGE 1842 01:13:00,542 --> 01:13:02,144 INVESTIGATORS TO DIVERSIFY 1843 01:13:02,211 --> 01:13:03,512 FUNDING. YOU KNOW, CERTAINLY 1844 01:13:03,579 --> 01:13:05,781 OUTSIDE OF THE NIH TO MAKE SURE 1845 01:13:05,848 --> 01:13:07,750 THEY ARE FULLY LEVERAGING OTHER 1846 01:13:07,816 --> 01:13:09,551 FUNDING SOURCES AND ALSO TO 1847 01:13:09,618 --> 01:13:10,853 FULLY LEVERAGE OPPORTUNITIES 1848 01:13:10,919 --> 01:13:13,756 ACROSS THE NIH AND LUPUS FOR 1849 01:13:13,822 --> 01:13:17,292 EXAMPLE IS RELEVANT TO 6 OR 8. 1850 01:13:17,359 --> 01:13:17,860 ICS. 1851 01:13:17,926 --> 01:13:20,462 ALSO, OF COURSE, FUNDING 1852 01:13:20,529 --> 01:13:21,530 OPPORTUNITIES COME UP THROUGH 1853 01:13:21,597 --> 01:13:22,998 HEEL AND HELPING TO END 1854 01:13:23,065 --> 01:13:24,466 [INDISCERNIBLE] LONG TERM AND 1855 01:13:24,533 --> 01:13:26,301 OTHERS AND PROGRAM OFFICERS, 1856 01:13:26,368 --> 01:13:27,736 THIS COMES UP ALL THE TIME WE 1857 01:13:27,803 --> 01:13:29,505 GET AN INQUIRY AND APPLICATION 1858 01:13:29,571 --> 01:13:31,940 ABOUT PAYING AND ARE YOU AWARE 1859 01:13:32,007 --> 01:13:33,408 OF HEEL FUNDING OPPORTUNITIES 1860 01:13:33,475 --> 01:13:35,177 AND WE ARE LOOKING FOR 1861 01:13:35,244 --> 01:13:36,478 OPPORTUNITIES TO PRESERVE OUR 1862 01:13:36,545 --> 01:13:38,914 BUDGET AS WELL. 1863 01:13:38,981 --> 01:13:41,483 SO, THE 20% IS WHAT WE HAVE SET 1864 01:13:41,550 --> 01:13:43,152 ASIDE FOR SELECT PAY AND WE WILL 1865 01:13:43,218 --> 01:13:44,486 CONTINUE TO MONITOR THAT. 1866 01:13:44,553 --> 01:13:46,588 NOW, IN TERMS OF METRICS, I 1867 01:13:46,655 --> 01:13:48,891 SUSPECT WE WILL LOOK AT THEM 1868 01:13:48,957 --> 01:13:50,959 INTERNALLY THREE TIMES A YEAR 1869 01:13:51,026 --> 01:13:52,394 AFTER EACH COUNCIL ROUND AND 1870 01:13:52,461 --> 01:13:55,397 REPORTING THEM OUT ANNUALLY AND 1871 01:13:55,464 --> 01:13:58,000 WORK, THIS IS A CHANGE. 1872 01:13:58,066 --> 01:13:59,835 AND THE ENVIRONMENT IS CHANGING. 1873 01:13:59,902 --> 01:14:02,137 YOU KNOW, EVEN IF WE HAVE THIS 1874 01:14:02,204 --> 01:14:04,873 PERFECT NOW, IT WON'T BE PERFECT 1875 01:14:04,940 --> 01:14:05,507 FOR TOMORROW. 1876 01:14:05,574 --> 01:14:09,478 WE WILL CONTINUE TO LOOK AT 1877 01:14:09,545 --> 01:14:09,745 METRICS. 1878 01:14:09,812 --> 01:14:12,581 WE HAVE LOTS OF INTEREST IN 1879 01:14:12,648 --> 01:14:13,615 UTILIZING THE SYSTEMS AND 1880 01:14:13,682 --> 01:14:16,351 INFORMATION WE HAVE AVAILABLE TO 1881 01:14:16,418 --> 01:14:18,787 LOOK AT IN INDIVIDUAL INVEST -- 1882 01:14:18,854 --> 01:14:20,622 UNIQUE INVESTIGATORS AND NUMBER 1883 01:14:20,689 --> 01:14:22,958 OF GRANTS AND DISTRIBUTION OF 1884 01:14:23,025 --> 01:14:23,225 SCORERS. 1885 01:14:23,292 --> 01:14:24,793 I WAS ACTUALLY SURPRISED YOU MAY 1886 01:14:24,860 --> 01:14:26,495 ALL WANT TO TAKE A LOOK. 1887 01:14:26,562 --> 01:14:28,197 ON THIS NOTE, MAYBE IF SOMEONE 1888 01:14:28,263 --> 01:14:30,399 CAN PUT IN THE CHAT, I DIDN'T 1889 01:14:30,465 --> 01:14:32,568 REALIZE THAT IT WAS PUBLICLY 1890 01:14:32,634 --> 01:14:33,569 AVAILABLE INFORMATION THAT YOU 1891 01:14:33,635 --> 01:14:36,171 CAN LOOK FOR EACH INSTITUTE AND 1892 01:14:36,238 --> 01:14:39,174 CENTER AT THE OVERLAPPING 1893 01:14:39,241 --> 01:14:40,509 DISTRIBUTION BETWEEN FUNDED AND 1894 01:14:40,576 --> 01:14:42,711 NOT FUNDED AND AWARDED 1895 01:14:42,778 --> 01:14:43,245 APPLICATIONS. 1896 01:14:43,312 --> 01:14:45,280 THERE IS A BIG OVERLAP. 1897 01:14:45,347 --> 01:14:48,116 IN OTHER WORDS, FOR MOST 1898 01:14:48,183 --> 01:14:48,417 INSTITUTES. 1899 01:14:48,483 --> 01:14:52,054 IN OTHER WORDS, THERE IS A LOT 1900 01:14:52,120 --> 01:14:54,690 OF APPLICATIONS THAT -- HOW CAN 1901 01:14:54,756 --> 01:14:58,327 I SAY THIS? YOU KNOW, YOU HAVE 1902 01:14:58,393 --> 01:14:59,795 FUNDED AND NOT FUNDED AND THERE 1903 01:14:59,862 --> 01:15:01,363 IS A BIG OVERLAP THERE. 1904 01:15:01,430 --> 01:15:02,965 IT IS NOT JUST A SCORE. 1905 01:15:03,031 --> 01:15:04,833 OTHER INSTITUTES AND CENTERS ARE 1906 01:15:04,900 --> 01:15:07,669 NOT RELYING EXCLUSIVELY ON THE 1907 01:15:07,736 --> 01:15:09,338 SCORE TO A MAYBE SURPRISING TO 1908 01:15:09,404 --> 01:15:10,539 YOU EXTENT. 1909 01:15:10,606 --> 01:15:12,140 THIS IS NOT. 1910 01:15:12,207 --> 01:15:13,909 >> LET ME SAY FOR THOSE THAT 1911 01:15:13,976 --> 01:15:14,843 CAN'T SEE THE CHAT. 1912 01:15:14,910 --> 01:15:16,111 >> OKAY. 1913 01:15:16,178 --> 01:15:18,547 >> DO A SEARCH FOR NIH DATA BOOK 1914 01:15:18,614 --> 01:15:20,515 THAT WILL TAKE YOU TO ALL OF 1915 01:15:20,582 --> 01:15:22,818 THIS INFORMATION THAT LINDSEY 1916 01:15:22,885 --> 01:15:23,785 WAS JUST MENTIONING. 1917 01:15:23,852 --> 01:15:25,554 >> WE SPENT A LOT OF TIME AND 1918 01:15:25,621 --> 01:15:28,357 EFFORT REACHING OUT TO OTHER 1919 01:15:28,423 --> 01:15:30,259 INSTITUTES AND CENTERS TO 1920 01:15:30,325 --> 01:15:31,226 UNDERSTAND HOW THEY ARE 1921 01:15:31,293 --> 01:15:33,195 APPROACHING THESE ISSUES AND, 1922 01:15:33,262 --> 01:15:35,097 YOU KNOW, LESSONS LEARNED. 1923 01:15:35,163 --> 01:15:36,798 WHAT ARE THE CHALLENGES 1924 01:15:36,865 --> 01:15:39,201 ASSOCIATED WITH, YOU KNOW, 1925 01:15:39,268 --> 01:15:40,903 DIFFERENT APPROACHES AND WE 1926 01:15:40,969 --> 01:15:42,337 INVESTED TIME AND EFFORT AND WE 1927 01:15:42,404 --> 01:15:43,639 UNDERSTAND THIS IS A BIG DEAL 1928 01:15:43,705 --> 01:15:45,741 FOR THE COMMUNITY AND WANTED TO 1929 01:15:45,807 --> 01:15:47,042 TAKE A THOUGHTFUL APPROACH AND 1930 01:15:47,109 --> 01:15:50,979 TRY TO GET IT AS RIGHT AS 1931 01:15:51,046 --> 01:15:54,182 POSSIBLE FROM THE OUTSET. 1932 01:15:54,249 --> 01:15:54,616 VALENTINA? 1933 01:15:54,683 --> 01:15:57,419 >> I WANTED TO CONNECT 1934 01:15:57,486 --> 01:15:59,187 CONVERSATION AND ONE ABOUT BEING 1935 01:15:59,254 --> 01:16:00,589 A CONVENTION THAT WE HEARD ABOUT 1936 01:16:00,656 --> 01:16:03,725 BEFORE AND BASIC BIAS TRAINING 1937 01:16:03,792 --> 01:16:04,793 AND SELECT PAY. 1938 01:16:04,860 --> 01:16:06,862 I THINK THAT IT -- THESE POCKETS 1939 01:16:06,929 --> 01:16:10,265 CAN CREATE AN OPPORTUNITY IF WE 1940 01:16:10,332 --> 01:16:13,568 GO AS A SLATE IN PUTTING ON 1941 01:16:13,635 --> 01:16:16,571 PRESSURE VALUES THAT WE WANT TO 1942 01:16:16,638 --> 01:16:18,373 LEAD THAT WILL BE MUCH BY THE 1943 01:16:18,440 --> 01:16:19,908 OUTCOME AND MEAN BY THAT IF WE 1944 01:16:19,975 --> 01:16:21,677 WANT TO [INDISCERNIBLE] AND 1945 01:16:21,743 --> 01:16:22,878 DISTRIBUTING FUNDING IN A WAY 1946 01:16:22,945 --> 01:16:25,280 THAT IS EQUITABLE ACROSS 1947 01:16:25,347 --> 01:16:26,148 INSTITUTIONS IN THE UNITED 1948 01:16:26,214 --> 01:16:29,918 STATES AND ACROSS IDENTITIES AND 1949 01:16:29,985 --> 01:16:32,454 LENS, THERE IS A POSSIBILITY TO 1950 01:16:32,521 --> 01:16:34,189 USE SELECT PAY TO COMPLEMENT AND 1951 01:16:34,256 --> 01:16:37,025 INTEGRATE IN WAY THAT NUMBERS OF 1952 01:16:37,092 --> 01:16:38,994 GRANTS THAT HAVE FUNDING IN THAT 1953 01:16:39,061 --> 01:16:41,430 PERIOD IS DISTRIBUTED EQUITABLY 1954 01:16:41,496 --> 01:16:43,432 AND LEAVING TO OWN DEVICES WE 1955 01:16:43,498 --> 01:16:45,534 ENFORCE FUNDING OF PEOPLE THAT 1956 01:16:45,600 --> 01:16:47,703 SOUND LIKE US AND ARE ALREADY 1957 01:16:47,769 --> 01:16:49,771 DOMINATING AND WE ARE NOT 1958 01:16:49,838 --> 01:16:50,973 CHANGING LANDSCAPE AND SELECT 1959 01:16:51,039 --> 01:16:53,442 PAY CAN HELP US JUMP THAT HURDLE 1960 01:16:53,508 --> 01:16:55,610 ESPECIALLY COMBINING WITH 1961 01:16:55,677 --> 01:16:56,745 IMPLICIT BIAS TRAINING AND PUT 1962 01:16:56,812 --> 01:16:59,081 US TO HAVE AN OUTCOME AS MUCH AS 1963 01:16:59,147 --> 01:17:00,482 VALUES THAT HAS TO BE DONE 1964 01:17:00,549 --> 01:17:03,952 BEFORE IT IS FINALIZED TO 1965 01:17:04,019 --> 01:17:06,121 CORRECT AND PERFECTION THAT WE 1966 01:17:06,188 --> 01:17:06,588 WILL IMPOSE. 1967 01:17:06,655 --> 01:17:08,457 >> GREAT SUGGESTION THAT YOU 1968 01:17:08,523 --> 01:17:09,858 REMINDED ME AND ANOTHER CORRECT 1969 01:17:09,925 --> 01:17:11,326 ME IF I'M WRONG, FOLKS. 1970 01:17:11,393 --> 01:17:13,762 WE DISCUSSED IT CONSIDERING ALSO 1971 01:17:13,829 --> 01:17:17,132 THE STATUS OF THE INSTITUTION 1972 01:17:17,199 --> 01:17:18,600 AND INSTITUTION WITH FEWER 1973 01:17:18,667 --> 01:17:20,068 RESOURCES AND OPPORTUNITIES TO 1974 01:17:20,135 --> 01:17:22,304 SERVE NIH FUNDING SERVING FROM 1975 01:17:22,371 --> 01:17:25,007 STANDPOINT OF NIH LEADERSHIP IS 1976 01:17:25,073 --> 01:17:27,776 A REASON TO GIVE AWARD SELECT 1977 01:17:27,843 --> 01:17:29,378 PAY AND EVERYTHING ELSE BEING 1978 01:17:29,444 --> 01:17:31,880 EQUAL AND SPREADING THE 1979 01:17:31,947 --> 01:17:32,247 OPPORTUNITIES. 1980 01:17:32,314 --> 01:17:34,049 >> AND THE KEY IS WHAT YOU SAID 1981 01:17:34,116 --> 01:17:35,484 EVERYTHING BEING EQUAL THAT 1982 01:17:35,550 --> 01:17:39,788 CANNOT BE EQUAL AND WE ARE NOT 1983 01:17:39,855 --> 01:17:41,156 ACCESSING RESOURCES MEMBERSHIP 1984 01:17:41,223 --> 01:17:43,191 TO BE ON TO AND INSTITUTION WE 1985 01:17:43,258 --> 01:17:45,227 ARE AT CAN'T USE SAME METRICS 1986 01:17:45,293 --> 01:17:47,129 THAT ARE MADE WITH PEOPLE THAT 1987 01:17:47,195 --> 01:17:49,431 HAD APPROXIMATELY POWER TO 1988 01:17:49,498 --> 01:17:50,899 RESOURCES AND THERE IS ATTENTION 1989 01:17:50,966 --> 01:17:53,969 I FEEL WHEN WE DEFINE METRICS 1990 01:17:54,036 --> 01:17:57,773 AND NIH HAS INCREDIBLE OFFICE 1991 01:17:57,839 --> 01:17:59,708 THAT CAN BE TAPPED ON AND 1992 01:17:59,775 --> 01:18:02,010 METRICS PUT IN PLACE SO FAR AND 1993 01:18:02,077 --> 01:18:03,779 EVOLVED TO BE TRUTHFUL TO WHERE 1994 01:18:03,845 --> 01:18:04,413 WE WANT TO GO. 1995 01:18:04,479 --> 01:18:07,482 >> YOU ARE SUGGESTING DR. ROBERT 1996 01:18:07,549 --> 01:18:08,750 WALKER AND OTHERS PERHAPS 1997 01:18:08,817 --> 01:18:10,552 SPEAKING OF UPCOMING COUNCIL 1998 01:18:10,619 --> 01:18:13,221 MEMBER AND ARE THINKING DEEPLY 1999 01:18:13,288 --> 01:18:15,557 ABOUT ISSUES AND DARREN REMINDED 2000 01:18:15,624 --> 01:18:17,426 ME WE ARE A LITTLE OVER INTO THE 2001 01:18:17,492 --> 01:18:18,894 NEXT SESSION AND MOVING TO 2002 01:18:18,960 --> 01:18:21,196 PATIENT ENGAGEMENT AND WE HAVE 2003 01:18:21,263 --> 01:18:23,165 OPPORTUNITIES FOR Q & A IN OPEN 2004 01:18:23,231 --> 01:18:25,067 AND CLOSED SESSION AND KEEP 2005 01:18:25,133 --> 01:18:26,334 THOUGHTS IN MIND. 2006 01:18:26,401 --> 01:18:30,705 NOW, I THINK THAT I'M TURNING TO 2007 01:18:30,772 --> 01:18:30,906 BOB. 2008 01:18:30,972 --> 01:18:33,075 >> DR. CARTER. 2009 01:18:33,141 --> 01:18:35,177 >> THANK YOU. AND REALLY 2010 01:18:35,243 --> 01:18:36,878 LOOKING FORWARD TO THIS SESSION 2011 01:18:36,945 --> 01:18:39,981 ON THE PATIENT ENGAGEMENT AND I 2012 01:18:40,048 --> 01:18:42,017 WILL INTRODUCE THREE SPEAKERS. 2013 01:18:42,084 --> 01:18:46,621 ONE OF WHOM I DON'T SEE YET. 2014 01:18:46,688 --> 01:18:50,058 SO, PETER, I HOPE HE WILL JOIN 2015 01:18:50,125 --> 01:18:50,225 US. 2016 01:18:50,292 --> 01:18:53,428 BUT THIS SESSION IS GOING TO BE 2017 01:18:53,495 --> 01:19:01,069 KICKED OFF BY SUE TRANWHO IS A 2018 01:19:01,136 --> 01:19:04,372 PATIENT AND PATIENT ENGAGEMENT 2019 01:19:04,439 --> 01:19:06,241 ACTIVIST WITH SDANLT LAW AND 2020 01:19:06,308 --> 01:19:07,309 POLICY BACKGROUND WHO IS 2021 01:19:07,375 --> 01:19:09,444 RECENTLY A MEMBER OF COUNCIL AND 2022 01:19:09,511 --> 01:19:11,847 RECEIVED HER LAW DEGREE FROM 2023 01:19:11,913 --> 01:19:15,183 UNIVERSITY OF KANSAS AND CAREER 2024 01:19:15,250 --> 01:19:17,085 SPANS WORK IN BIOETHICS 2025 01:19:17,152 --> 01:19:20,589 DISABILITY RIGHTS GENETIC 2026 01:19:20,655 --> 01:19:24,126 DISCRIMINATION AND HISTORY OF 2027 01:19:24,192 --> 01:19:26,228 PATIENT LED HEALTH EDUCATION AND 2028 01:19:26,294 --> 01:19:28,230 FOUNDER AND CEO AND EXPECT 2029 01:19:28,296 --> 01:19:30,332 PATIENT ENGAGEMENT AND PUT IN 2030 01:19:30,398 --> 01:19:33,335 DUE TANK AND SERVED IN 2031 01:19:33,401 --> 01:19:34,202 ENGAGEMENT LEADERSHIP ROLES 2032 01:19:34,269 --> 01:19:37,239 PATIENT CENTERED OUTCOME 2033 01:19:37,305 --> 01:19:39,007 RESEARCH INSTITUTE AND 2034 01:19:39,074 --> 01:19:40,609 AUTHORIZED FOUNDATION AND SERVES 2035 01:19:40,675 --> 01:19:44,513 ON FDA'S PATIENT ADVISORY 2036 01:19:44,579 --> 01:19:45,580 COMMITTEE AND IMMEDIATE PAST 2037 01:19:45,647 --> 01:19:47,149 CHAIR OF INTERNATIONAL SOCIETY 2038 01:19:47,215 --> 01:19:50,152 OF ECONOMICS AND OUTCOMES 2039 01:19:50,218 --> 01:19:53,221 RESEARCH AND GLOBAL PATIENTS 2040 01:19:53,288 --> 01:19:56,191 COUNCIL AND CO-AUTHORED MULTIPLE 2041 01:19:56,258 --> 01:19:58,760 PEER REVIEWS AND VALUE OF 2042 01:19:58,827 --> 01:20:00,162 PATIENT ENGAGEMENT AND SESSION 2043 01:20:00,228 --> 01:20:02,964 IS HONOR AND ROLE AND ADVOCATE 2044 01:20:03,031 --> 01:20:05,467 DURING TENURE AND ROLE ON 2045 01:20:05,534 --> 01:20:07,736 COUNCIL AND PROMISED THIS 2046 01:20:07,802 --> 01:20:09,171 SESSION THAT ARE FITTING WITH 2047 01:20:09,237 --> 01:20:11,173 TALKS SHE WILL HEAR LATER TODAY 2048 01:20:11,239 --> 01:20:14,109 ON CLINICAL STUDIES AND WE ARE 2049 01:20:14,176 --> 01:20:15,677 DELIGHTED TO COMPLETE THE 2050 01:20:15,744 --> 01:20:16,912 PROMISSORY NOTE WE GAVE YOU TO 2051 01:20:16,978 --> 01:20:17,579 MONTHS AGO. 2052 01:20:17,646 --> 01:20:20,148 THANK YOU FOR JOINING AND 2053 01:20:20,215 --> 01:20:21,082 LEADING OFF. 2054 01:20:21,149 --> 01:20:22,717 >> THANK YOU SO MUCH AND FOR THE 2055 01:20:22,784 --> 01:20:24,419 OPPORTUNITY TO BE HERE AND 2056 01:20:24,486 --> 01:20:26,488 PRESENT AND SPECIAL THANKS TO 2057 01:20:26,555 --> 01:20:28,857 YOU DR. CARTER AND SO SAD TO SEE 2058 01:20:28,924 --> 01:20:30,892 YOU GO. PRIVILEGE AND HONOR TO 2059 01:20:30,959 --> 01:20:32,827 WORK WITH YOU IN THIS CAPACITY. 2060 01:20:32,894 --> 01:20:34,763 I WILL MOVE REALLY QUICKLY 2061 01:20:34,829 --> 01:20:35,564 THROUGH MY SLIDES. 2062 01:20:35,630 --> 01:20:38,166 I KNOW WE HAVE LIMITED TIME AND 2063 01:20:38,233 --> 01:20:39,434 I WILL BREEZE OVER A COUPLE. 2064 01:20:39,501 --> 01:20:46,341 YOU HAVE THEM IN YOUR COUNCIL 2065 01:20:46,408 --> 01:20:46,741 BOO 2066 01:20:46,808 --> 01:20:46,975 BOOKS. 2067 01:20:47,042 --> 01:20:49,044 I THINK SOME -- YEAH. THERE WE 2068 01:20:49,110 --> 01:20:49,678 GO. 2069 01:20:49,744 --> 01:20:52,247 I WILL FOCUS ON VERY HIGH-LEVEL 2070 01:20:52,314 --> 01:20:53,982 KEY POINTS AND WILL START WITH 2071 01:20:54,049 --> 01:20:55,884 THE WHAT OF THE -- YOU KNOW, 2072 01:20:55,951 --> 01:20:57,919 WHAT IS ENGAGEMENT AND WHY DO WE 2073 01:20:57,986 --> 01:21:00,322 DO IT AND SPEND REMAINDER OF 2074 01:21:00,388 --> 01:21:02,224 TIME FOCUSED ON HOW AND REALLY 2075 01:21:02,290 --> 01:21:04,492 TRYING TO GET TANGIBLE AND 2076 01:21:04,559 --> 01:21:04,793 TECHNICAL. 2077 01:21:04,859 --> 01:21:08,196 LET'S GO TO THE NEXT SLIDE AND 2078 01:21:08,263 --> 01:21:12,367 NEXT SLIDE AND PAUSE. 2079 01:21:12,434 --> 01:21:13,835 GREAT. THANK YOU. 2080 01:21:13,902 --> 01:21:16,271 BIGGEST CHALLENGE IN PATIENT 2081 01:21:16,338 --> 01:21:17,672 ENGAGEMENT IS TERM PATIENT 2082 01:21:17,739 --> 01:21:19,841 ENGAGEMENT THAT MEANS SO MANY 2083 01:21:19,908 --> 01:21:21,109 THINGS TO SO MANY DIFFERENT 2084 01:21:21,176 --> 01:21:22,410 PEOPLE AND SMALL GROUP OF US 2085 01:21:22,477 --> 01:21:25,747 THAT STARTED TO ELEVATE 2086 01:21:25,814 --> 01:21:26,748 BIFURCATED LANGUAGE AROUND TYPE 2087 01:21:26,815 --> 01:21:28,883 A AND TYPE B ENGAGEMENT AND TYPE 2088 01:21:28,950 --> 01:21:31,386 A ENGAGEMENT IS WHAT REALLY MOST 2089 01:21:31,453 --> 01:21:33,321 PEOPLE MEAN AND MORE TRADITIONAL 2090 01:21:33,388 --> 01:21:35,523 NOTION OF PATIENTS BEING ENGAGED 2091 01:21:35,590 --> 01:21:38,893 IN OWN CARE AND OWN DISEASE 2092 01:21:38,960 --> 01:21:41,763 MANAGEMENT AND ENGAGED IN THEIR 2093 01:21:41,830 --> 01:21:44,132 OWN INVOLVEMENT IN CLINICAL 2094 01:21:44,199 --> 01:21:46,635 TRIALS AS STUDY SUBJECTS AND 2095 01:21:46,701 --> 01:21:48,236 PARTICIPANTS AND TYPE B PATIENT 2096 01:21:48,303 --> 01:21:51,172 ENGAGEMENT THEN IS A NEWER PECK 2097 01:21:51,239 --> 01:21:53,241 ORRI MODEL OF ENGAGEMENT NOT 2098 01:21:53,308 --> 01:21:55,310 ABOUT PATIENTS BEING INVOLVED IN 2099 01:21:55,377 --> 01:21:56,745 THEIR OWN CARE OR OWN 2100 01:21:56,811 --> 01:21:58,013 INVOLVEMENT AND RESEARCH AND 2101 01:21:58,079 --> 01:21:59,981 ABOUT PATIENTS SERVING AS 2102 01:22:00,048 --> 01:22:02,317 PARTNERS ADVISORS LEADERS AND 2103 01:22:02,384 --> 01:22:03,785 SITTING SIDE BY SIDE WITH 2104 01:22:03,852 --> 01:22:05,954 RESEARCHERS AND CLINICIANS IN 2105 01:22:06,021 --> 01:22:09,224 CODESIGN AND CO-CONDUCT AND 2106 01:22:09,291 --> 01:22:10,558 CO-DISSEMINATION OF RESEARCH AND 2107 01:22:10,625 --> 01:22:12,627 HEALTH CARE INNOVATION. 2108 01:22:12,694 --> 01:22:13,728 TWO TYPES ARE BOTH IMPORTANT. 2109 01:22:13,795 --> 01:22:15,830 IF WE GO TO THE NEXT SLIDE, WE 2110 01:22:15,897 --> 01:22:18,466 CAN REALLY LOOK AT VALUE OF TYPE 2111 01:22:18,533 --> 01:22:21,636 A ENGAGEMENT AND THIS IS THINGS 2112 01:22:21,703 --> 01:22:23,171 LIKE SHARED DECISION MAKING AND 2113 01:22:23,238 --> 01:22:24,973 CO-PRODUCTION OF HEALTH OUTCOMES 2114 01:22:25,040 --> 01:22:26,708 PATIENT EDUCATION AND 2115 01:22:26,775 --> 01:22:28,643 PEER-TO-PEER SUPPORT AND PATIENT 2116 01:22:28,710 --> 01:22:31,179 ENROLLED IN CLINICAL RESEARCH 2117 01:22:31,246 --> 01:22:33,114 STUDIES IT IS SUPPORT AND 2118 01:22:33,181 --> 01:22:35,483 NURTURING OF PATIENTS TO HAVE 2119 01:22:35,550 --> 01:22:38,720 QUESTIONS ANSWERED AND FEEL 2120 01:22:38,787 --> 01:22:39,788 COMFORTABLE WITH RESEARCH. 2121 01:22:39,854 --> 01:22:42,223 WAY WE GET TO TYPE A ENGAGEMENT 2122 01:22:42,290 --> 01:22:44,259 IS THROUGH TYPE B METHODS AND 2123 01:22:44,326 --> 01:22:46,227 WAY YOU DESIGN CLINICAL TRIAL TO 2124 01:22:46,294 --> 01:22:48,496 BE FEASIBLE AND ACCESSIBLE FOR 2125 01:22:48,563 --> 01:22:50,332 STUDY PARTICIPANTS IS PARTNERING 2126 01:22:50,398 --> 01:22:51,800 WITH PATIENTS FROM COMMUNITY OF 2127 01:22:51,866 --> 01:22:53,301 INTEREST TO MAKE THAT WAY AND 2128 01:22:53,368 --> 01:22:55,036 REASON I STARTED WITH THIS IS 2129 01:22:55,103 --> 01:22:56,805 YOU WOULD BE AMAZED OR MAYBE YOU 2130 01:22:56,871 --> 01:22:59,174 HAVE ALREADY EXPERIENCED THIS, 2131 01:22:59,240 --> 01:23:02,277 HOW FAR YOU CAN GET INTO A 2132 01:23:02,344 --> 01:23:04,479 CONVERSATION OR INTO AN ENTIRE 2133 01:23:04,546 --> 01:23:06,147 WORK STREAM BEFORE YOU REALIZE 2134 01:23:06,214 --> 01:23:07,849 THAT HALF OF THE GROUP WAS 2135 01:23:07,916 --> 01:23:09,517 TALKING ABOUT TYPE A ENGAGEMENT 2136 01:23:09,584 --> 01:23:12,120 AND HALF TALKING ABOUT TYPE B 2137 01:23:12,187 --> 01:23:13,955 ENGAGEMENT AND ARE COMPLETELY 2138 01:23:14,022 --> 01:23:14,756 DIFFERENT AND REQUIRE DIFFERENT 2139 01:23:14,823 --> 01:23:18,360 SKILLS AND TOOLS AND WANT TO LAY 2140 01:23:18,426 --> 01:23:20,428 THAT GROUNDWORK FIRST. 2141 01:23:20,495 --> 01:23:22,197 LET'S GO TO THE NEXT SLIDE AND 2142 01:23:22,263 --> 01:23:25,333 NEXT ONE AND I WILL STOP HERE. 2143 01:23:25,400 --> 01:23:27,168 SPENDING A COUPLE MINUTES ON WHY 2144 01:23:27,235 --> 01:23:29,070 AND THIS TOUCHES ALSO A LITTLE 2145 01:23:29,137 --> 01:23:30,004 ON THE HOW. 2146 01:23:30,071 --> 01:23:34,242 THIS IS A STUDY DONE BY BENNETT 2147 01:23:34,309 --> 01:23:35,810 LEVITAN AND GET AZ FEW YEARS AGO 2148 01:23:35,877 --> 01:23:38,213 AND THEY WANTED TO PUT A DOLLAR 2149 01:23:38,279 --> 01:23:40,448 AMOUNT ON VALUE OF PATIENT 2150 01:23:40,515 --> 01:23:42,917 ENGAGE PT AND SPECIFIC TO 2151 01:23:42,984 --> 01:23:44,486 PATIENT ENGAGE PT AND MEDICAL 2152 01:23:44,552 --> 01:23:47,322 PRODUCT R & D AND THEY 2153 01:23:47,389 --> 01:23:50,225 CALCULATED FOR EVERY $100,000 2154 01:23:50,291 --> 01:23:51,760 INVESTED RETURN ON INVESTMENT 2155 01:23:51,826 --> 01:23:53,395 WAS 5 HUNDRED TIMES THAT AMOUNT 2156 01:23:53,461 --> 01:23:55,597 AND THIS IS BECAUSE OF REDUCTION 2157 01:23:55,663 --> 01:23:58,967 AND PROTOCOL AMENDMENTS AND 2158 01:23:59,033 --> 01:24:00,468 REDUCTION OF FAILED TRIALS DUE 2159 01:24:00,535 --> 01:24:02,537 TO LACK OF RECRUITMENT AND 2160 01:24:02,604 --> 01:24:04,172 RETENTION AND A MYRIAD OF 2161 01:24:04,239 --> 01:24:04,439 REASONS. 2162 01:24:04,506 --> 01:24:07,242 THIS IS A DOLLARS AND CENTS WAY 2163 01:24:07,308 --> 01:24:09,544 TO THINK ABOUT IT THIS IS 2164 01:24:09,611 --> 01:24:11,179 LOGICAL FOR ALL KINDS OF 2165 01:24:11,246 --> 01:24:12,347 RESEARCH TO HAVE THOSE MEMBERS 2166 01:24:12,414 --> 01:24:13,782 OF THE COMMUNITY OF INTEREST AT 2167 01:24:13,848 --> 01:24:14,416 THE TANL. 2168 01:24:14,482 --> 01:24:16,551 IF WE GO TO THE NEXT SLIDE, 2169 01:24:16,618 --> 01:24:18,453 THESE ARE A LITTLE MORE NEAR AND 2170 01:24:18,520 --> 01:24:23,324 DEAR TO MY HEART IN RHEUMATOLOGY 2171 01:24:23,391 --> 01:24:25,193 SPACE AND EXAMPLE WHAT IT LOOKS 2172 01:24:25,260 --> 01:24:27,195 LIKE WITH PATIENTS IN THE ROOM 2173 01:24:27,262 --> 01:24:29,164 HELPING PARTNER AND IN 2174 01:24:29,230 --> 01:24:30,064 COMPLICATED PARTS OF RESEARCH 2175 01:24:30,131 --> 01:24:31,966 AND WAS A STUDY LOOKING AT 2176 01:24:32,033 --> 01:24:34,202 TREATMENT TRENDS AND LOOKING AT 2177 01:24:34,269 --> 01:24:36,438 CLAIMS DATA AND DATA SCIENTISTS 2178 01:24:36,504 --> 01:24:38,473 WERE CONCERNED THAT DATA ITSELF 2179 01:24:38,540 --> 01:24:40,642 WAS DEFECTIVE AND THEY SAID WE 2180 01:24:40,708 --> 01:24:42,777 ARE SEEING ALL THESE STOPS AND 2181 01:24:42,844 --> 01:24:44,212 STARTS OF THERAPY AND PEOPLE 2182 01:24:44,279 --> 01:24:46,114 SWITCHING BACK TO A THERAPY THAT 2183 01:24:46,181 --> 01:24:48,349 THEY DISCONTINUED AND BLENDING 2184 01:24:48,416 --> 01:24:48,650 THERAPIES. 2185 01:24:48,716 --> 01:24:50,084 IT LOOKS LIKE A MESS. 2186 01:24:50,151 --> 01:24:52,020 WE ARE CONFUSED ABOUT WHY IT 2187 01:24:52,086 --> 01:24:52,821 LOOKS THIS WAY. 2188 01:24:52,887 --> 01:24:54,622 WHEN BRINGING TO PATIENT 2189 01:24:54,689 --> 01:24:57,091 PARTNERS ON STUDY, WE SAID, OH, 2190 01:24:57,158 --> 01:25:00,361 YOU KNOW, FIRST OF ALL, CLAIMS 2191 01:25:00,428 --> 01:25:01,663 DATA IS NEVER PERFECT. 2192 01:25:01,729 --> 01:25:04,399 THIS IS REFLECTIVE OF PATIENT 2193 01:25:04,466 --> 01:25:07,235 EXPERIENCE AND WE HAVE TO STOP 2194 01:25:07,302 --> 01:25:11,439 FOR SURGERIES, INFECTIONS 2195 01:25:11,506 --> 01:25:13,475 INSURANCE REASONS AND SWITCH 2196 01:25:13,541 --> 01:25:15,176 BACK TO OLD THERAPY AND THERE 2197 01:25:15,243 --> 01:25:17,712 ARE SO MANY REASONS THESE CHANGE 2198 01:25:17,779 --> 01:25:19,681 AND WHAT IS CHILLING ABOUT THAT 2199 01:25:19,747 --> 01:25:21,349 EXAMPLE IS IT MAKES ME THINK HOW 2200 01:25:21,416 --> 01:25:23,952 MANY ROOMS IS THIS DATA ANALYSIS 2201 01:25:24,018 --> 01:25:26,488 HAPPENING IN WHERE THERE ARE NOT 2202 01:25:26,554 --> 01:25:28,590 PATIENTS OR PRACTICING 2203 01:25:28,656 --> 01:25:30,358 CLINICIANS YOU CAN FRAME IT IN 2204 01:25:30,425 --> 01:25:33,061 REALITY WHAT IT REALLY MEANS TO 2205 01:25:33,127 --> 01:25:34,195 TAKE THERAPEUTICS AND MANAGE 2206 01:25:34,262 --> 01:25:37,265 THESE DISEASES AND WE GO TO NEXT 2207 01:25:37,332 --> 01:25:37,532 SLIDE. 2208 01:25:37,599 --> 01:25:39,667 THIS IS ABOUT LOOKING AT FAR, 2209 01:25:39,734 --> 01:25:41,703 FAR END OF THE RESEARCH PARADIGM 2210 01:25:41,769 --> 01:25:43,438 AND THINKING ABOUT 2211 01:25:43,505 --> 01:25:44,806 IMPLEMENTATION AND UPTAKE OF 2212 01:25:44,873 --> 01:25:47,141 FINDINGS AND WAS, AGAIN, FROM A 2213 01:25:47,208 --> 01:25:49,244 FEW YEARS AGO WHEN PANEL OF 2214 01:25:49,310 --> 01:25:51,179 PATIENTS AND PARENTS 2215 01:25:51,246 --> 01:25:53,214 PARTICIPATED IN THE UPDATE OF 2216 01:25:53,281 --> 01:25:55,550 JIA CLINICAL PRACTICE GUIDELINES 2217 01:25:55,617 --> 01:25:58,453 I WAS AT ARTHRITIS FOUNDATION AT 2218 01:25:58,520 --> 01:26:00,288 THAT TIME AND DID ONBOARDING AND 2219 01:26:00,355 --> 01:26:02,257 PREP FOR PANEL OF FOLKS AND 2220 01:26:02,323 --> 01:26:03,157 BASIC INFORMATION ABOUT HOW 2221 01:26:03,224 --> 01:26:06,094 EVIDENCE IS GRADED AND WHAT IT 2222 01:26:06,160 --> 01:26:07,795 LOOKS LIKE TO DEVELOP A PICO 2223 01:26:07,862 --> 01:26:09,097 STATEMENT AND HOW IT WAS GOING 2224 01:26:09,163 --> 01:26:10,832 TO WORK AND ONE OF THE 2225 01:26:10,899 --> 01:26:12,867 INTERESTING THING WAS AT THE END 2226 01:26:12,934 --> 01:26:14,235 OF ALL THIS EVEN THOUGH ONE OF 2227 01:26:14,302 --> 01:26:16,638 THE THERAPIES THAT IS STILL A 2228 01:26:16,704 --> 01:26:18,773 GOLD STANDARD THERAPY IS 2229 01:26:18,840 --> 01:26:20,975 RELATIVELY SAFE AND RELATIVELY 2230 01:26:21,042 --> 01:26:23,578 EFFECTIVE AND IS CERTAINLY 2231 01:26:23,645 --> 01:26:24,946 RELATIVELY EXPENSIVE AND EVEN 2232 01:26:25,013 --> 01:26:26,915 THOUGH IT GETS TOP BILLING 2233 01:26:26,981 --> 01:26:28,750 BECAUSE IT HAS BEEN AROUND A 2234 01:26:28,816 --> 01:26:31,052 LONG TIME, THEY FELT VERY 2235 01:26:31,119 --> 01:26:32,787 STRONGLY WE PUT LANGUAGE IN 2236 01:26:32,854 --> 01:26:34,989 PRACTICE GUIDELINES ABOUT 2237 01:26:35,056 --> 01:26:36,858 POTENTIAL FOR SIDE-EFFECTS TO 2238 01:26:36,925 --> 01:26:39,093 FACILITATE MEANINGFUL AND SHARED 2239 01:26:39,160 --> 01:26:40,528 DIALOGUE BETWEEN CLINICIAN AND 2240 01:26:40,595 --> 01:26:42,797 PATIENT AND FAMILY AND WHAT 2241 01:26:42,864 --> 01:26:45,233 OFTEN HAPPENS IS PATIENTS THAT 2242 01:26:45,300 --> 01:26:47,468 DON'T LIKE THESE DRUGS THEY ARE 2243 01:26:47,535 --> 01:26:49,070 NEW OR FUNCTIONAL SIDE-EFFECTS 2244 01:26:49,137 --> 01:26:50,538 THEY DON'T TAKE THEM AND WE ARE 2245 01:26:50,605 --> 01:26:52,774 NOT OPERATING IN REALITY AND 2246 01:26:52,840 --> 01:26:54,042 CLINICIAN DOESN'T KNOW WHY WE 2247 01:26:54,108 --> 01:26:55,810 ARE NOT GETTING BETTER AND 2248 01:26:55,877 --> 01:26:57,612 FAMILY DOESN'T KNOW PATIENT IS 2249 01:26:57,679 --> 01:27:00,281 NOT TAKING THE DRUG AND 2250 01:27:00,348 --> 01:27:02,216 CAPTURING IN CLINICAL PRACTICE 2251 01:27:02,283 --> 01:27:03,918 GUIDELINES GOAL IS LET'S SURFACE 2252 01:27:03,985 --> 01:27:05,353 WHAT END RESULTS MIGHT BE TO 2253 01:27:05,420 --> 01:27:07,789 TALK ABOUT THEM AND COME UP WITH 2254 01:27:07,855 --> 01:27:08,656 PRACTICAL SOLUTIONS. 2255 01:27:08,723 --> 01:27:13,261 LET'S GO TO THE NEXT SLIDE. 2256 01:27:13,328 --> 01:27:13,995 NEXT ONE. 2257 01:27:14,062 --> 01:27:15,797 I WON'T SPEND TIME HERE AND 2258 01:27:15,863 --> 01:27:17,565 SAYING THAT ENGAGEMENT SHOULD 2259 01:27:17,632 --> 01:27:19,167 HAPPEN BEFORE AND DURING AND 2260 01:27:19,233 --> 01:27:20,501 AFTER AND ALL THE WAY THROUGH 2261 01:27:20,568 --> 01:27:23,871 THE RESEARCH PROCESS AND THERE 2262 01:27:23,938 --> 01:27:27,175 IS NOTHING TOO EARLY BUT NOTHING 2263 01:27:27,241 --> 01:27:30,612 TOO LATE AND UP FRONT CONSTRUCT 2264 01:27:30,678 --> 01:27:31,613 AND CONCEPT. 2265 01:27:31,679 --> 01:27:33,147 LET'S GO TO THE NEXT SLIDE AND 2266 01:27:33,214 --> 01:27:35,083 GOING TO THE NEXT ONE, SORRY IF 2267 01:27:35,149 --> 01:27:38,353 I MAKE YOU CAR SICK WITH THE 2268 01:27:38,419 --> 01:27:39,520 CHANGES. 2269 01:27:39,587 --> 01:27:42,557 LET'S STOP HERE. TWO CUE THINGS 2270 01:27:42,624 --> 01:27:44,192 AND HOW TO DO THIS WELL AND 2271 01:27:44,258 --> 01:27:46,027 TRAINING AND ONBOARDING HAS TO 2272 01:27:46,094 --> 01:27:47,462 BE FOR EVERYBODY AND RESEARCH 2273 01:27:47,528 --> 01:27:49,797 AND SCIENCE BASICS FOR BASICS 2274 01:27:49,864 --> 01:27:52,600 PARTNERS GOAL IS NOT TO TURN 2275 01:27:52,667 --> 01:27:54,535 NOOSE RESEARCHERS AND LIVED 2276 01:27:54,602 --> 01:27:56,671 EXPERIENCE IS EXPERTISE AND IT 2277 01:27:56,738 --> 01:27:58,439 MAKES GOOD SENSE TO GIVE US 2278 01:27:58,506 --> 01:28:02,477 BASIC AND FOUNDATIONAL TERMS TO 2279 01:28:02,543 --> 01:28:03,811 REALLY BE MEANINGFULLY INVOLVED 2280 01:28:03,878 --> 01:28:05,813 IN CONVERSATIONS AND DECISION 2281 01:28:05,880 --> 01:28:08,916 MAKING AND THINGS LIKE WHAT ARE 2282 01:28:08,983 --> 01:28:09,751 QUALITATIVE METHODS OR 2283 01:28:09,817 --> 01:28:11,319 QUANTITATIVE METHODS AND WHAT IT 2284 01:28:11,386 --> 01:28:14,055 MEANS FOR A STUDY TO BE 2285 01:28:14,122 --> 01:28:15,289 WELL-POWERED AND WHAT IS 2286 01:28:15,356 --> 01:28:16,524 CLINICAL AND STATISTICAL 2287 01:28:16,591 --> 01:28:16,924 SIGNIFICANCE? 2288 01:28:16,991 --> 01:28:20,662 THIS ALLOWS US TO BE CONVER SENT 2289 01:28:20,728 --> 01:28:22,030 AND TRULY MEANINGFUL PARTNERS 2290 01:28:22,096 --> 01:28:24,032 AND CRITICAL TYPE OF ONBOARDING 2291 01:28:24,098 --> 01:28:26,134 NOTE IS ENGAGEMENT OF ONBOARDING 2292 01:28:26,200 --> 01:28:27,301 THAT IS FOR EVERYBODY. 2293 01:28:27,368 --> 01:28:30,138 THIS MIGHT BE COMPLETELY NEW FOR 2294 01:28:30,204 --> 01:28:31,773 CLINICIANS AND RESEARCHERS AND 2295 01:28:31,839 --> 01:28:33,608 PATIENT PARTNERS AND JUST 2296 01:28:33,675 --> 01:28:35,610 UNDERSTANDING HOW WE WORK 2297 01:28:35,677 --> 01:28:38,046 TOGETHER AND HOW WE HAVE THESE 2298 01:28:38,112 --> 01:28:41,082 MAY BE DIFFICULT CONVERSATIONS 2299 01:28:41,149 --> 01:28:42,283 SOMETIMES IF WE HAVE DIFFERENT 2300 01:28:42,350 --> 01:28:43,651 OPINIONS AND THOUGHTS AND GREAT 2301 01:28:43,718 --> 01:28:46,020 NEWS IS YOU DON'T HAVE TO INVENT 2302 01:28:46,087 --> 01:28:46,754 ANY OF THIS. 2303 01:28:46,821 --> 01:28:49,223 THERE IS MORE AVAILABLES THAN 2304 01:28:49,290 --> 01:28:51,426 YOU COULD EVER USE AND GO TO 2305 01:28:51,492 --> 01:28:53,127 PECK ORRI WEBSITE TO FIND THERE 2306 01:28:53,194 --> 01:28:55,129 AND WE HAVE DEVELOPED ENTIRE 2307 01:28:55,196 --> 01:28:56,698 MODULES AND TRAINING ENTIRE 2308 01:28:56,764 --> 01:28:59,600 RESEARCH TEAMS THAT IS ALL 2309 01:28:59,667 --> 01:29:00,935 AVAMABLE. YOU HAVE TO MAKE TIME 2310 01:29:01,002 --> 01:29:02,270 AND SPACE TO USE IT AND OTHER 2311 01:29:02,336 --> 01:29:04,272 PIECE THAT IS NOT TALKED ABOUT 2312 01:29:04,338 --> 01:29:07,141 AS MUCH IS NEED TO FACILITATE 2313 01:29:07,208 --> 01:29:08,943 ENGAGEMENT IT IS NOT I LIKE TO 2314 01:29:09,010 --> 01:29:11,079 SAY IT IS NOT LIKE KOOL-AID YOU 2315 01:29:11,145 --> 01:29:14,215 CAN'T JUST ADD WATER OR PATIENCE 2316 01:29:14,282 --> 01:29:16,651 OR MIX THEM IN. THERE HAS TO BE 2317 01:29:16,718 --> 01:29:18,920 THOUGHT AND BE VERY INTENTIONAL 2318 01:29:18,986 --> 01:29:20,588 AND MEANS PREPARATION BEFORE 2319 01:29:20,655 --> 01:29:23,191 ACTIVITIES AND MEETINGS DURING 2320 01:29:23,257 --> 01:29:24,358 ACTIVITIES AND MEETINGS AND 2321 01:29:24,425 --> 01:29:26,094 FOLLOW UP AFTER AND GOING TO 2322 01:29:26,160 --> 01:29:28,196 NEXT SLIDE I WILL SHARE NICE AND 2323 01:29:28,262 --> 01:29:29,864 TANGIBLE EXAMPLES WHAT THIS 2324 01:29:29,931 --> 01:29:31,432 LOOKS LIKE AND SAY YOU HAVE 2325 01:29:31,499 --> 01:29:33,468 PATIENT PARTNERS ON RESEARCH 2326 01:29:33,534 --> 01:29:35,169 TEAM AND MAYBE LOOKING AT 2327 01:29:35,236 --> 01:29:37,071 CURRENT ENROLLMENT NUMBERS FOR 2328 01:29:37,138 --> 01:29:37,338 PROJECT. 2329 01:29:37,405 --> 01:29:40,541 RATHER THAN SHARING DATA AND 2330 01:29:40,608 --> 01:29:42,844 SAYING WHAT DO YOU THINK, 2331 01:29:42,910 --> 01:29:44,612 PROVIDING MORE GUIDANCE AND 2332 01:29:44,679 --> 01:29:45,680 ALMOST QUEUING SO PEOPLE KIND OF 2333 01:29:45,747 --> 01:29:47,482 KNOW WHAT ARE -- WHAT DO YOU 2334 01:29:47,548 --> 01:29:49,383 WANT ME TO REACT TO AND WHAT IS 2335 01:29:49,450 --> 01:29:50,551 MY JOB HERE? 2336 01:29:50,618 --> 01:29:52,220 QUESTIONS LIKE WHAT GAPS DO YOU 2337 01:29:52,286 --> 01:29:52,553 SEE? 2338 01:29:52,620 --> 01:29:55,757 DO YOU HAVE IDEAS WHY THESE GAPS 2339 01:29:55,823 --> 01:29:56,157 EXIST? 2340 01:29:56,224 --> 01:29:57,992 WHAT COULD WE DO TO BETTER FILL 2341 01:29:58,059 --> 01:29:59,694 THE GAPS? 2342 01:29:59,761 --> 01:30:01,996 THINK ABOUT RECRUITMENT 2343 01:30:02,063 --> 01:30:02,296 STRATEGIES. 2344 01:30:02,363 --> 01:30:04,132 MAYBE IS SHARING INCOMING DATA 2345 01:30:04,198 --> 01:30:05,833 AND YOU ARE MAYBE IN HEART OF 2346 01:30:05,900 --> 01:30:07,702 STUDY LOOKING FOR THEMES AND 2347 01:30:07,769 --> 01:30:10,004 FINDINGS AND STARTING TO DRAW 2348 01:30:10,071 --> 01:30:11,472 CONCLUSIONS AND TALKING TO 2349 01:30:11,539 --> 01:30:13,441 PATIENT PARTNERS ABOUT IS THIS 2350 01:30:13,508 --> 01:30:14,642 CONSISTENT WITH WHAT YOU WOULD 2351 01:30:14,709 --> 01:30:17,145 EXPECT AND WHAT YOU SEE IN YOUR 2352 01:30:17,211 --> 01:30:17,445 COMMUNITY? 2353 01:30:17,512 --> 01:30:18,613 IS ANYTHING SURPRISING? 2354 01:30:18,679 --> 01:30:21,315 DO YOU HAVE QUESTIONS OR DO WE 2355 01:30:21,382 --> 01:30:23,184 NEED TO DO FURTHER SUBANALYSIS 2356 01:30:23,251 --> 01:30:25,219 WHAT WE ARE SEEING HERE? 2357 01:30:25,286 --> 01:30:27,054 REALLY PULLING EVERYBODY INTO 2358 01:30:27,121 --> 01:30:28,389 THE CONVERSATION. 2359 01:30:28,456 --> 01:30:31,192 SO THAT IT IS MEANINGFUL AND 2360 01:30:31,259 --> 01:30:32,460 REALLY AUTHENTIC. 2361 01:30:32,527 --> 01:30:34,362 GOING TO NEXT SLIDE, THIS CAN 2362 01:30:34,428 --> 01:30:36,898 EVEN HAPPEN WHEN IT IS HIGHLY, 2363 01:30:36,964 --> 01:30:38,232 HIGHLY TECHNICAL DISCUSSIONS AND 2364 01:30:38,299 --> 01:30:40,501 ONE EXAMPLE THAT I DEALT WITH 2365 01:30:40,568 --> 01:30:45,173 RECENTLY IS WE NEEDED INPUT ON 2366 01:30:45,239 --> 01:30:47,175 DIFFERENT DRUGS AND CLINICIANS 2367 01:30:47,241 --> 01:30:49,277 AND RESEARCH WAS FOCUSED WAS ON 2368 01:30:49,343 --> 01:30:50,812 MECHANISM OF ACTION AND WHAT IS 2369 01:30:50,878 --> 01:30:52,914 TARGET OF THE DRUG? 2370 01:30:52,980 --> 01:30:54,749 FELT PRETTY FAR AFIELD FROM 2371 01:30:54,816 --> 01:30:57,185 WHERE PATIENTS WOULD BE FOCUSED. 2372 01:30:57,251 --> 01:30:59,987 IF YOU CROSSWALK ISSUES TO 2373 01:31:00,054 --> 01:31:01,756 THINGS THAT TOUCH PATIENT WLZ IT 2374 01:31:01,823 --> 01:31:03,791 IS PHYSICALLY TOUCHING THEM OR 2375 01:31:03,858 --> 01:31:05,026 EMOTIONALLY TOUCHING OR 2376 01:31:05,092 --> 01:31:06,527 FUNCTIONALLY OR PRACTICALLY, 2377 01:31:06,594 --> 01:31:09,730 MAYBE IT IS A DRUG A IS 2378 01:31:09,797 --> 01:31:12,166 INJECTABLE AND DRUG B IS ORAL OR 2379 01:31:12,233 --> 01:31:14,569 MAYBE DRUG A HAS THIS SIDE 2380 01:31:14,635 --> 01:31:16,103 EFFECT PROFILE AND DRUG B HAS 2381 01:31:16,170 --> 01:31:18,105 THIS SIDE EFFECT PROFILE. 2382 01:31:18,172 --> 01:31:20,508 THOSE THINGS WILL CERTAINLY DRAW 2383 01:31:20,575 --> 01:31:22,977 INPUT AND -- AND, YOU KNOW, 2384 01:31:23,044 --> 01:31:23,744 OPINIONS AND THOUGHTS FROM 2385 01:31:23,811 --> 01:31:25,479 PATIENT PARTNERS AND TAKES A 2386 01:31:25,546 --> 01:31:29,083 LITTLE BIT OF MENTAL MATH AND 2387 01:31:29,150 --> 01:31:30,718 THINKING THROUGH WHERE DO THESE 2388 01:31:30,785 --> 01:31:33,120 TOUCH THE PATIENTS AND WHERE WE 2389 01:31:33,187 --> 01:31:34,922 CAN KIND OF GROUND CONVERSATION 2390 01:31:34,989 --> 01:31:36,858 AND WILL CLOSE IF WE CAN GO TO 2391 01:31:36,924 --> 01:31:38,960 NEXT SLIDE I WANT TO FLAG IF YOU 2392 01:31:39,026 --> 01:31:41,462 HAVEN'T SEEN IT NEWLY DEVELOPED 2393 01:31:41,529 --> 01:31:43,664 PECK ORRI GUIDANCE I'M STILL 2394 01:31:43,731 --> 01:31:46,267 VERY PROUD AND EXCITED ABOUT 2395 01:31:46,334 --> 01:31:47,969 ENGAGEMENT RUBRIC CREATED A LONG 2396 01:31:48,035 --> 01:31:50,438 TIME AGO AND 10 YEARS NOW AND 2397 01:31:50,504 --> 01:31:51,973 NATURAL GROWTH THEY NOW CREATED 2398 01:31:52,039 --> 01:31:55,009 A NEW AND IMPROVED MUCH MORE 2399 01:31:55,076 --> 01:31:57,245 FULLY FLESHED OUT GUIDANCE AND 2400 01:31:57,311 --> 01:31:58,145 SIX FOUNDATIONAL EXPECTATIONS 2401 01:31:58,212 --> 01:31:59,780 FOR PARTNERSHIP AND RESEARCH AND 2402 01:31:59,847 --> 01:32:01,649 IF YOU HAVE NOT LOOKED AT THEM, 2403 01:32:01,716 --> 01:32:04,151 IT IS AN ENTIRE GUIDANCE ITSELF. 2404 01:32:04,218 --> 01:32:06,087 I REALLY RECOMMEND IT AND MY 2405 01:32:06,153 --> 01:32:07,889 LAST SLIDE IS A LIST OF 2406 01:32:07,955 --> 01:32:09,857 RESOURCES THAT I THINK I'M AT 2407 01:32:09,924 --> 01:32:10,057 TIME. 2408 01:32:10,124 --> 01:32:13,127 I WILL HAND IT OVER TO MY NEXT 2409 01:32:13,194 --> 01:32:13,761 COLLEAGUE. 2410 01:32:13,828 --> 01:32:15,363 THANKS, AGAIN, FOR THE 2411 01:32:15,429 --> 01:32:16,197 OPPORTUNITY TO BE HERE. 2412 01:32:16,264 --> 01:32:18,900 >> THANK YOU. IT IS REALLY 2413 01:32:18,966 --> 01:32:19,500 SUPERB. 2414 01:32:19,567 --> 01:32:21,535 JUST A GREAT WAY TO START THIS 2415 01:32:21,602 --> 01:32:21,903 CONVERSATION. 2416 01:32:21,969 --> 01:32:25,539 WE DO HAVE TIME AND PLAN TO HAVE 2417 01:32:25,606 --> 01:32:27,975 TIME AT THE END TO DWET INTO 2418 01:32:28,042 --> 01:32:30,111 THESE THINGS IN DETAIL AND IS 2419 01:32:30,177 --> 01:32:31,112 THERE CLARIFYING QUESTIONS 2420 01:32:31,178 --> 01:32:35,883 BEFORE WE MOVE ON TO PETER? 2421 01:32:35,950 --> 01:32:37,318 PETER, I HOPE YOU ARE SHOWING 2422 01:32:37,385 --> 01:32:39,186 YOUR SLIDES OR HAS SOMETHING 2423 01:32:39,253 --> 01:32:41,289 HAPPENED IN THE INTERIM? 2424 01:32:41,355 --> 01:32:44,191 OKAY. GOOD. PETER IS -- DR. 2425 01:32:44,258 --> 01:32:46,627 AMERICA OE IS INTERNATIONALLY 2426 01:32:46,694 --> 01:32:50,298 RECOGNIZED RESEARCH IN CLINICAL 2427 01:32:50,364 --> 01:32:52,867 EXPERT IN VAS CALITIS AND AUTO 2428 01:32:52,934 --> 01:32:56,170 SYSTEMIC IMMUNE DISEASES 2429 01:32:56,237 --> 01:33:00,041 RECEIVING FROM YALE AND 2430 01:33:00,107 --> 01:33:02,843 UNIVERSITY OF PENNSYLVANIA AND 2431 01:33:02,910 --> 01:33:04,745 FELLOWSHIP AT MASS GENERAL 2432 01:33:04,812 --> 01:33:07,181 HARVARD MEDICAL SCHOOL AND 2433 01:33:07,248 --> 01:33:08,783 SERVES AS CHIEF OF RHEUMATOLOGY 2434 01:33:08,849 --> 01:33:11,619 AND PROFESSOR OF MEDICINE AND 2435 01:33:11,686 --> 01:33:12,753 EPIDEMIOLOGY AND RECEIVED MOST 2436 01:33:12,820 --> 01:33:17,124 FUNDING FROM NIH AND FROM FDA 2437 01:33:17,191 --> 01:33:18,893 PECK ORRI AND OTHER INDUSTRY 2438 01:33:18,960 --> 01:33:23,197 SOURCES AND FOUNDATIONS AND 2439 01:33:23,264 --> 01:33:26,467 PRINCIPAL INVESTIGATOR HOLDING 2440 01:33:26,534 --> 01:33:27,568 INTERNATIONAL RESEARCH 2441 01:33:27,635 --> 01:33:28,436 INFRASTRUCTURE FOR VAS CLIETS 2442 01:33:28,502 --> 01:33:31,172 AND CLINICAL INVESTIGATION AND 2443 01:33:31,238 --> 01:33:33,808 FOCUSES ON CLINICAL TRIALS AND 2444 01:33:33,874 --> 01:33:35,576 CONDUCT AND OUTCOME MEASURE 2445 01:33:35,643 --> 01:33:38,079 DEVELOPMENT EPIDEMIOLOGY AND 2446 01:33:38,145 --> 01:33:39,313 BIOMARKER DISCOVERY AND THANK 2447 01:33:39,380 --> 01:33:40,014 YOU, PETER. 2448 01:33:40,081 --> 01:33:42,550 >> GREAT. CAN YOU HEAR ME? 2449 01:33:42,616 --> 01:33:43,985 >> YES. THANKS. 2450 01:33:44,051 --> 01:33:45,953 >> GREAT. SORRY THANK YOU. I 2451 01:33:46,020 --> 01:33:48,489 HAVE BEEN -- SORRY I MENTIONED 2452 01:33:48,556 --> 01:33:50,858 ACTUALLY IN CLINIC THAT I HAVE 2453 01:33:50,925 --> 01:33:51,926 SEEN PATIENTS AND WAS ABLE TO 2454 01:33:51,993 --> 01:33:53,461 MAKE THE TIME AND APPRECIATE YOU 2455 01:33:53,527 --> 01:33:56,030 ASKING ME TO DO THIS AND 2456 01:33:56,097 --> 01:33:57,932 DELIGHTED TO BE WITH PATIENT 2457 01:33:57,999 --> 01:33:59,767 PARTNERS PART OF THE SAME 2458 01:33:59,834 --> 01:34:01,635 SEMINAR AND IS SAME SEGMENT AND 2459 01:34:01,702 --> 01:34:03,070 AREA THAT IS IMPORTANT TO ME AND 2460 01:34:03,137 --> 01:34:05,573 THINK SHOULD BE IMPORTANT TO ALL 2461 01:34:05,639 --> 01:34:07,475 OF US AND HAS GONE REALLY WELL 2462 01:34:07,541 --> 01:34:08,275 FOR US. 2463 01:34:08,342 --> 01:34:12,847 LET ME -- HOLD ON. PEOPLE FROM 2464 01:34:12,913 --> 01:34:14,548 NIH TALKING TO ME AND WILL TALK 2465 01:34:14,615 --> 01:34:16,450 ABOUT ENGAGING PATIENTS AND 2466 01:34:16,517 --> 01:34:19,420 CLINICAL RESEARCH FROM 2467 01:34:19,487 --> 01:34:21,856 INVESTIGATOR'S EXPERIENCE AND MY 2468 01:34:21,922 --> 01:34:22,857 PERSPECTIVE AND WILL YOU HEAR 2469 01:34:22,923 --> 01:34:24,191 SAME THINGS YOU HEARD WHICH IS 2470 01:34:24,258 --> 01:34:25,760 GOOD AND REASON FOR THAT. WE 2471 01:34:25,826 --> 01:34:28,029 HAVE SIMILAR EXPERIENCES MOVING 2472 01:34:28,095 --> 01:34:31,098 FORWARD AND I LEND INTERNATIONAL 2473 01:34:31,165 --> 01:34:33,601 RESEARCH VRVC AND SUPPORT FROM 2474 01:34:33,667 --> 01:34:35,169 NIAMS AND NOT WHAT I WILL REFER 2475 01:34:35,236 --> 01:34:37,638 TO AT THIS POINT AND MORE OTHER 2476 01:34:37,705 --> 01:34:40,141 NETWORKS THAT IS ALL INTEGRATED 2477 01:34:40,207 --> 01:34:41,776 AND LET ME CHANGE AND TODAY I 2478 01:34:41,842 --> 01:34:43,310 WANT TO TALK ABOUT IMPORTANCE OF 2479 01:34:43,377 --> 01:34:45,780 ENGAGEMENT IN CLINICAL RESEARCH 2480 01:34:45,846 --> 01:34:48,015 AND EVOLUTION OF PATIENT 2481 01:34:48,082 --> 01:34:49,083 ENGAGEMENT AND VAS CALITIS AND 2482 01:34:49,150 --> 01:34:51,819 MAIN AREA OF RESEARCH AND 2483 01:34:51,886 --> 01:34:54,188 SIMILAR EVOLUTION AND HAS TAKEN 2484 01:34:54,255 --> 01:34:54,488 LONGER. 2485 01:34:54,555 --> 01:34:57,792 AND THIS IS FROM OUR -- MY 2486 01:34:57,858 --> 01:34:58,125 PERSPECTIVE. 2487 01:34:58,192 --> 01:34:59,460 LESSONS LEARNED REGARDING 2488 01:34:59,527 --> 01:35:01,629 PATIENT ENGAGEMENT IN CLINICAL 2489 01:35:01,695 --> 01:35:04,065 RESEARCH AND EXAMPLES OF 2490 01:35:04,131 --> 01:35:06,400 SUCCESSFUL PATIENT ENGAGEMENT 2491 01:35:06,467 --> 01:35:08,235 TAKING QUESTIONS AS WE MAY DO AS 2492 01:35:08,302 --> 01:35:10,104 A GROUP AFTERWARDS AND THINK 2493 01:35:10,171 --> 01:35:11,639 THAT THE IMPORTANCE AND BENEFITS 2494 01:35:11,705 --> 01:35:13,808 OF PATIENT ENGAGEMENT IN 2495 01:35:13,874 --> 01:35:15,976 CLINICAL RESEARCH HAS REALLY 2496 01:35:16,043 --> 01:35:17,278 INCREASED RECOGNITION IN PAST 10 2497 01:35:17,344 --> 01:35:21,515 TO 20 YEARS OF IMPORTANCE AND 2498 01:35:21,582 --> 01:35:23,350 INCLUDING PATIENTS AND RESEARCH 2499 01:35:23,417 --> 01:35:25,152 ENTERPRISE AND ACCELERATED TO 2500 01:35:25,219 --> 01:35:26,720 POINT THAT ROUTINE SHOULD BE IN 2501 01:35:26,787 --> 01:35:29,056 MANY WAYS AND PATIENT ENGAGEMENT 2502 01:35:29,123 --> 01:35:30,858 IS MUCH MORE THAN WHAT WE WOULD 2503 01:35:30,925 --> 01:35:33,060 HAVE SAID IN THE PAST THAT IS 2504 01:35:33,127 --> 01:35:34,895 BETA TESTING FORMS RECRUITMENT 2505 01:35:34,962 --> 01:35:37,264 HEALTH GETTING LETTER SUPPORT 2506 01:35:37,331 --> 01:35:39,700 FROM PATIENT ADVOCACY GROUP AND 2507 01:35:39,767 --> 01:35:41,502 ARE IMPORTANT AND FORM OF 2508 01:35:41,569 --> 01:35:43,337 ENGAGING AND IS NOT DIRECT 2509 01:35:43,404 --> 01:35:45,139 ENGAGEMENT IN THE RESEARCH 2510 01:35:45,206 --> 01:35:45,439 PROCESS. 2511 01:35:45,506 --> 01:35:48,075 I WILL REFER TO PATIENT RESEARCH 2512 01:35:48,142 --> 01:35:50,978 PARTNERS, PRPS AND LOTS OF 2513 01:35:51,045 --> 01:35:52,146 DIFFERENT THINGS DIRECTLY 2514 01:35:52,213 --> 01:35:54,181 INVOLVED IN RESEARCH 2515 01:35:54,248 --> 01:35:55,216 PRIORITIZATION AND STUDY DESIGN 2516 01:35:55,282 --> 01:35:58,018 AND PROJECT LIMITATION AND DATA 2517 01:35:58,085 --> 01:36:00,788 ANALYSIS AND DISSEMINATION OF 2518 01:36:00,855 --> 01:36:02,656 RESEARCH AND OVER TIME AND THAT 2519 01:36:02,723 --> 01:36:04,225 IS THE SORT OF FULL DECK MODEL 2520 01:36:04,291 --> 01:36:06,494 THAT I THINK WE HAVE BEEN ABLE 2521 01:36:06,560 --> 01:36:08,562 TO SUCCESSFULLY DO AND HAS 2522 01:36:08,629 --> 01:36:09,697 WORKED WELL. 2523 01:36:09,763 --> 01:36:13,567 BEST OF CLINICAL RESEARCH 2524 01:36:13,634 --> 01:36:14,268 CONSORTIUM INTERNATIONAL 2525 01:36:14,335 --> 01:36:16,137 RESEARCH WE DO TRIALS TRAINING 2526 01:36:16,203 --> 01:36:18,506 BIOMARKER AND WE HAVE A 2527 01:36:18,572 --> 01:36:21,108 REPOSITORY AND ALSO FORM 2528 01:36:21,175 --> 01:36:26,514 SOMETHING CALLED [INDISCERNIBLE] 2529 01:36:26,580 --> 01:36:29,817 WE ARE DOING PATIENT ENGAGEMENT 2530 01:36:29,884 --> 01:36:31,719 BEFORE AND HAVE REALLY STEPPED 2531 01:36:31,785 --> 01:36:34,288 IT UP AND THINK THAT THIS IS THE 2532 01:36:34,355 --> 01:36:36,690 BOTTOM LINE AS ENGAGING PATIENTS 2533 01:36:36,757 --> 01:36:38,993 AND RESEARCH IMPROVES RESEARCH 2534 01:36:39,059 --> 01:36:41,795 AND MIGHT BE MORE IMPORTANT AND 2535 01:36:41,862 --> 01:36:43,030 IMPACTFUL AND STUDY OF RARE 2536 01:36:43,097 --> 01:36:45,266 DISEASE BUT NOT SURE I ONLY 2537 01:36:45,332 --> 01:36:45,933 STUDY RARE DISEASE. 2538 01:36:46,000 --> 01:36:48,269 EVOLUTION OF THINKING ABOUT THE 2539 01:36:48,335 --> 01:36:50,037 IMPLEMENTATION OF DIRECT PATIENT 2540 01:36:50,104 --> 01:36:51,906 ENGAGEMENT AND RESEARCH? 2541 01:36:51,972 --> 01:36:53,807 AGAIN, IT ONLY HAS TO DO WITH 2542 01:36:53,874 --> 01:36:56,143 YEARS I HAVE STUDIED AND THERE 2543 01:36:56,210 --> 01:36:57,845 IS ALMOST NO ENGAGEMENT 20 YEARS 2544 01:36:57,912 --> 01:37:01,282 AGO AND HAVE SEEN THAT INCREASE 2545 01:37:01,348 --> 01:37:05,352 AND PEK ORRI AS MENTIONED IS A 2546 01:37:05,419 --> 01:37:08,222 MAJOR PUSH AND PECK CORI 2547 01:37:08,289 --> 01:37:09,490 REQUIRES PATIENT ENGAGEMENT 2548 01:37:09,557 --> 01:37:11,458 BEFORE IT WAS DEFINED BY PECK 2549 01:37:11,525 --> 01:37:14,428 CORI AND BEFORE ANY OF US KNEW 2550 01:37:14,495 --> 01:37:15,329 WHAT THAT MEANT. 2551 01:37:15,396 --> 01:37:19,066 I THINK THAT WE HAD TO FIGURE IT 2552 01:37:19,133 --> 01:37:21,302 OUT WITH PECK ORRI AND 2553 01:37:21,368 --> 01:37:24,305 PRIVILEGED TO GET FIRST ROUND OF 2554 01:37:24,371 --> 01:37:28,342 PILOTED AWARDS PECK ORRI GAVE 2555 01:37:28,409 --> 01:37:29,944 AND GRANT OF AWARD DEVELOPING 2556 01:37:30,010 --> 01:37:32,413 PATIENT OUTCOME THAT HAS TO HAVE 2557 01:37:32,479 --> 01:37:34,882 PATIENT PARTNERSHIP AND WORKING 2558 01:37:34,949 --> 01:37:36,550 WITH PECK CORI WE BEGIN TO THINK 2559 01:37:36,617 --> 01:37:39,186 ABOUT PATIENT ENGAGEMENT NEEDS 2560 01:37:39,253 --> 01:37:41,956 AND FUNDING FOR PATIENT POWERED 2561 01:37:42,022 --> 01:37:43,123 RESEARCH THAT I WILL TALK ABOUT 2562 01:37:43,190 --> 01:37:45,426 IN A MOMENT. WE ARE NOT ONLY 2563 01:37:45,492 --> 01:37:47,528 ONES THEIR PATIENT ENGAGEMENT IS 2564 01:37:47,595 --> 01:37:49,296 INHERENT IN WHAT WE ARE DOG AND 2565 01:37:49,363 --> 01:37:52,499 WE WERE THERE IN BEGINNING OF 2566 01:37:52,566 --> 01:37:54,001 PECK ORRI WHEN PATIENT 2567 01:37:54,068 --> 01:37:55,970 ENGAGEMENT WAS DEFINED AND 2568 01:37:56,036 --> 01:37:58,138 WORKED ON AND MANY MORE PROJECTS 2569 01:37:58,205 --> 01:38:01,141 IN DRC AND TELL YOU RESEARCH 2570 01:38:01,208 --> 01:38:03,577 NETWORK THAT IT IS REQUIRED AND 2571 01:38:03,644 --> 01:38:06,046 IS INHERENTLY WHAT WE DO AND I'M 2572 01:38:06,113 --> 01:38:08,215 HAPPY TO SAY WE ARE SEEING 2573 01:38:08,282 --> 01:38:10,384 PATIENT ENGAGEMENT AND INDUSTRY 2574 01:38:10,451 --> 01:38:12,019 WORK AND DO WORK WITH INDUSTRY 2575 01:38:12,086 --> 01:38:14,421 AND DEVELOPING NEW DRUGS AS WELL 2576 01:38:14,488 --> 01:38:16,223 AND SHOWING QUICK EXAMPLE OF 2577 01:38:16,290 --> 01:38:18,592 THAT AND THERE HAVE BEEN 2578 01:38:18,659 --> 01:38:20,894 LESSONED LEARNED. YOU DON'T 2579 01:38:20,961 --> 01:38:22,363 JUST FLIP A SWITCH. 2580 01:38:22,429 --> 01:38:24,665 EVOLUTIONARY PROCESS AND FROM MY 2581 01:38:24,732 --> 01:38:25,733 PERSPECTIVE AND THOSE THAT 2582 01:38:25,799 --> 01:38:28,435 PATIENTS HAVE WORKED WITH AND IS 2583 01:38:28,502 --> 01:38:29,336 ABOUT STUDYING REASONABLE 2584 01:38:29,403 --> 01:38:31,538 EXPECTATIONS AND WHAT LEVEL OF 2585 01:38:31,605 --> 01:38:33,207 ENGAGEMENT THERE IS THAT PEOPLE 2586 01:38:33,274 --> 01:38:34,575 ARE EXPECTING PATIENT PARTNERS 2587 01:38:34,642 --> 01:38:36,510 HAS TO BE AND SAME FOR 2588 01:38:36,577 --> 01:38:37,911 INVESTIGATORS, BY THE WAY. WHAT 2589 01:38:37,978 --> 01:38:39,179 DOES IT MEAN? 2590 01:38:39,246 --> 01:38:40,881 DIFFERENT IN DIFFERENT STAGES 2591 01:38:40,948 --> 01:38:42,750 AND BASED WHO PATIENTS ARE AND 2592 01:38:42,816 --> 01:38:45,119 WHAT PROJECT IS AND SPEED OF 2593 01:38:45,185 --> 01:38:46,220 RESEARCH OFTEN SURPRISES 2594 01:38:46,287 --> 01:38:48,155 PATIENTS AND IS THE SLOW PACE OF 2595 01:38:48,222 --> 01:38:50,958 RESEARCH AND ESPECIALLY CLINICAL 2596 01:38:51,025 --> 01:38:52,793 TRIALS AND EVERYBODY WANTS 2597 01:38:52,860 --> 01:38:53,994 DISEASE STUDIED AND CURED 2598 01:38:54,061 --> 01:38:55,095 YESTERDAY. I DO TOO. 2599 01:38:55,162 --> 01:38:57,097 THERE NEEDS TO BE EDUCATION 2600 01:38:57,164 --> 01:38:59,600 ABOUT WHY THINGS TAKE AS LONG AS 2601 01:38:59,667 --> 01:39:00,634 THEY DO. 2602 01:39:00,701 --> 01:39:02,736 WE NEED TO CLARIFY RULES AND I 2603 01:39:02,803 --> 01:39:04,738 LIKE TO SAY THAT WE ARE ALL 2604 01:39:04,805 --> 01:39:06,840 EQUAL BUT NOT EQUIVALENT AND WE 2605 01:39:06,907 --> 01:39:08,108 HAVE DIFFERENT SKILLS AND 2606 01:39:08,175 --> 01:39:08,342 THINGS. 2607 01:39:08,409 --> 01:39:10,544 TO THINK THAT PATIENTS WILL DO 2608 01:39:10,611 --> 01:39:12,946 WHAT THE INVESTIGATORS DO AND 2609 01:39:13,013 --> 01:39:16,350 THAT THEY DO AND PATIENTS DO AND 2610 01:39:16,417 --> 01:39:17,918 LOSES FLEXIBILITY AND LOSE 2611 01:39:17,985 --> 01:39:19,453 RICHNESS OF HAVING DIFFERENT 2612 01:39:19,520 --> 01:39:21,922 PEOPLE AND VOICES INVOLVED AND 2613 01:39:21,989 --> 01:39:24,725 ONCE WE DO THAT MAKES FOR BETTER 2614 01:39:24,792 --> 01:39:26,593 RELATIONSHIP AND LEARN TO USE 2615 01:39:26,660 --> 01:39:28,195 EACH OTHER'S RESOURCES. 2616 01:39:28,262 --> 01:39:29,697 THIS REQUIRES EDUCATION AND 2617 01:39:29,763 --> 01:39:32,299 SHOULD HAVE A GRID HERE OF A 2 2618 01:39:32,366 --> 01:39:34,702 BY 2 AND INVESTIGATORS TO 2619 01:39:34,768 --> 01:39:36,136 INVESTIGATORS AND TELL YOU WHEN 2620 01:39:36,203 --> 01:39:38,772 I INVOLVE INVESTIGATORS LEADING 2621 01:39:38,839 --> 01:39:40,708 PROJECT AND INSIST WHEN YOU HAVE 2622 01:39:40,774 --> 01:39:42,176 PATIENT PARTNER OR 2 THEY WANT 2623 01:39:42,242 --> 01:39:44,578 TO KNOW WHAT IT MEANS AND WE ARE 2624 01:39:44,645 --> 01:39:45,679 EDUCATING THEM ABOUT VALUE OF 2625 01:39:45,746 --> 01:39:49,750 THAT AND HOW IT WORKS AND 2626 01:39:49,817 --> 01:39:58,092 PATIENTS NEED TO -- CHOOSING 2627 01:39:58,158 --> 01:40:01,395 RESEARCH AND SITUATION TO HELP 2628 01:40:01,462 --> 01:40:04,665 PICK WHICH PATIENTS AND EDUCATE 2629 01:40:04,732 --> 01:40:08,268 PATIENT AND PATIENT 2630 01:40:08,335 --> 01:40:09,503 INVESTIGATORS BACK AND FORTH AND 2631 01:40:09,570 --> 01:40:12,172 TRIAL THAT WILL LAST FOR 5 OR SO 2632 01:40:12,239 --> 01:40:16,076 YEARS OR MORE AND IS IT A 2633 01:40:16,143 --> 01:40:17,277 ONE-TIME SURVEY OR DIFFERENT 2634 01:40:17,344 --> 01:40:18,812 PROJECTS REQUIRE DIFFERENT 2635 01:40:18,879 --> 01:40:21,315 LEVELS OF ENGAGEMENT AND CULTURE 2636 01:40:21,382 --> 01:40:22,750 OF RESEARCH GROUP IS DIFFERENT 2637 01:40:22,816 --> 01:40:25,619 IF DOING FOR A WHILE OR NOT AND 2638 01:40:25,686 --> 01:40:28,589 ONE SIZE DOESN'T FIT ALL AND DOG 2639 01:40:28,655 --> 01:40:29,757 EVERYTHING OR NOTHING IS NOT 2640 01:40:29,823 --> 01:40:32,659 PRODUCTIVE AND IS DIFFERENT WAYS 2641 01:40:32,726 --> 01:40:34,261 OF DOING THINGS. 2642 01:40:34,328 --> 01:40:36,463 TAKES TIME TO GET THIS RIGHT AND 2643 01:40:36,530 --> 01:40:38,198 IS WHAT IS IMPORTANT TO REALIZE. 2644 01:40:38,265 --> 01:40:39,433 WHAT ARE ROLES? 2645 01:40:39,500 --> 01:40:41,802 ROLES ARE GOING TO LOOK FAMILIAR 2646 01:40:41,869 --> 01:40:43,837 TO THOSE THAT ARE INVESTIGATORS 2647 01:40:43,904 --> 01:40:46,306 AND PATIENT RESEARCH PARTNERS 2648 01:40:46,373 --> 01:40:49,243 FRAFRNG AND ARE NON-EXCLUSIVE 2649 01:40:49,309 --> 01:40:51,211 INVESTIGATORS ADVISORS 2650 01:40:51,278 --> 01:40:52,413 CO-AUTHORS AND EVERY STAGE OF 2651 01:40:52,479 --> 01:40:53,981 DEVELOPMENT AS YOU HEARD I AGREE 2652 01:40:54,047 --> 01:40:57,251 THERE IS A ROLE FOR PATIENTS AT 2653 01:40:57,317 --> 01:40:58,986 EVERY STAGE CONCEPT DESIGN 2654 01:40:59,052 --> 01:41:00,320 PROTOCOL DEVELOPMENT 2655 01:41:00,387 --> 01:41:02,189 IMPLEMENTATION RECRUITMENT 2656 01:41:02,256 --> 01:41:03,824 ANALYSIS REPORTING DISSEMINATION 2657 01:41:03,891 --> 01:41:06,260 OR RESULTS AND MAKES MOST SENSE 2658 01:41:06,326 --> 01:41:08,896 FOR CLINICAL TRIAL AND COULD BE 2659 01:41:08,962 --> 01:41:10,998 ANY TYPE OF OBSERVATIONAL DATA 2660 01:41:11,064 --> 01:41:15,436 ANALYSIS AND ALL SORTS OF 2661 01:41:15,502 --> 01:41:15,702 STUDIES. 2662 01:41:15,769 --> 01:41:19,039 WE DID RESEARCH HOW WE ARE DOG 2663 01:41:19,106 --> 01:41:20,140 PATIENT INVOLVEMENT IN RESEARCH 2664 01:41:20,207 --> 01:41:22,943 AND MEDICAL DEVELOPMENT FROM A 2665 01:41:23,010 --> 01:41:24,411 COUPLE YEARS AGO IT WAS 2666 01:41:24,478 --> 01:41:26,680 QUALITATIVE RESEARCH BASED ON 22 2667 01:41:26,747 --> 01:41:29,116 REVIEWS PATIENT PARTNERS STAFF 2668 01:41:29,183 --> 01:41:30,617 INVESTIGATORS AND 42 MEETINGS 2669 01:41:30,684 --> 01:41:32,252 AND RECORDED MEETINGS WHERE WE 2670 01:41:32,319 --> 01:41:34,922 HAD PATIENT PARTNERS ON AND 2671 01:41:34,988 --> 01:41:37,224 INVESTIGATORS AND WERE STUDIED 2672 01:41:37,291 --> 01:41:38,659 IN COMPREHENSIVE FASHION AND 2673 01:41:38,725 --> 01:41:40,294 LEARNED AND ARTICLE GOES INTO 2674 01:41:40,360 --> 01:41:41,795 GREATER DEPTH AND IF I LEAVE YOU 2675 01:41:41,862 --> 01:41:43,664 WITH NOTHING ELSE TODAY THIS 2676 01:41:43,730 --> 01:41:45,165 CONCLUSION PROBABLY SAYS IT ALL 2677 01:41:45,232 --> 01:41:47,167 THAT DIRECT ENGAGEMENT IN 2678 01:41:47,234 --> 01:41:48,302 RESEARCH DESIGN AND DEVELOPMENT 2679 01:41:48,368 --> 01:41:51,138 BY PATIENT PARTNERS IN 2680 01:41:51,205 --> 01:41:52,506 CO-LEARNING BETWEEN 2681 01:41:52,573 --> 01:41:53,874 INVESTIGATORS AND PATIENT 2682 01:41:53,941 --> 01:41:55,008 PARTNERS CAN RESULT IN POSITIVE 2683 01:41:55,075 --> 01:41:56,777 AND PRODUCTIVE WORKING 2684 01:41:56,844 --> 01:41:58,912 RELATIONSHIP FOR MEMBERS OF THE 2685 01:41:58,979 --> 01:42:00,781 MEDICAL TEAM AND BIDIRECTIONAL 2686 01:42:00,848 --> 01:42:03,350 ENGAGEMENT DIRECTLY BENEFITS AND 2687 01:42:03,417 --> 01:42:05,018 IMPACTS RESEARCH DESIGN 2688 01:42:05,085 --> 01:42:07,187 PARTICIPANT RECRUITMENT TO 2689 01:42:07,254 --> 01:42:08,822 STUDIES AND SUBJECT TO RETENTION 2690 01:42:08,889 --> 01:42:10,958 AND SAYS WHERE IT IS AT AND WE 2691 01:42:11,024 --> 01:42:12,226 LEARNED HOW TO DO IT WITH ONE 2692 01:42:12,292 --> 01:42:13,961 ANOTHER AND ADD THAT YOU WILL 2693 01:42:14,027 --> 01:42:15,829 SEE THAT FIVE OF THESE AUTHORS 2694 01:42:15,896 --> 01:42:18,832 ARE EITHER PATIENTS OR PATIENT 2695 01:42:18,899 --> 01:42:20,133 ADVOCATES IN PATIENT RESEARCH 2696 01:42:20,200 --> 01:42:23,170 GROUP AND WANT TO PARTICULARLY 2697 01:42:23,237 --> 01:42:28,308 CALL OUT CELESTE WHO DIED A FEW 2698 01:42:28,375 --> 01:42:30,277 YEARS FRAG KIDNEY DISEASE 2699 01:42:30,344 --> 01:42:31,745 LONG-STANDING CHAMPION OF 2700 01:42:31,812 --> 01:42:34,581 PATIENT ADVOCACY AND ENGAGEMENT 2701 01:42:34,648 --> 01:42:36,383 AND EXCELLENT PARTNER TO HAVE 2702 01:42:36,450 --> 01:42:38,585 AND DRIVING FORCE IN THIS 2703 01:42:38,652 --> 01:42:41,522 MOVEMENT AND FEW EXAMPLES FROM 2704 01:42:41,588 --> 01:42:44,525 OUR WORK DEVELOPMENT OF THIS 2705 01:42:44,591 --> 01:42:45,192 CALLED [INDISCERNIBLE] THAT IS 2706 01:42:45,259 --> 01:42:47,661 ONE OF OUR DISEASES WE STUDY A 2707 01:42:47,728 --> 01:42:50,264 LOT. PRO AND DISEASE-SPECIFIC. 2708 01:42:50,330 --> 01:42:52,199 THIS IS HARD TO DO AND IS HARD 2709 01:42:52,266 --> 01:42:54,301 TO DO IT RIGHT AND HARD TO 2710 01:42:54,368 --> 01:42:56,570 DEVELOP A VALIDATED MEASURE THAT 2711 01:42:56,637 --> 01:42:58,472 IS PATIENT REPORTED AND IS A 2712 01:42:58,539 --> 01:43:00,607 COMPLEX MULTI-YEAR AND 2713 01:43:00,674 --> 01:43:02,943 MULTISTAGE PROJECT DOING ACROSS 2714 01:43:03,010 --> 01:43:04,745 THREE COUNTRIES AND TWO 2715 01:43:04,811 --> 01:43:05,746 CONTINENTS REQUIRING PATIENTS 2716 01:43:05,812 --> 01:43:08,615 AND INVESTIGATORS AND DATA AND 2717 01:43:08,682 --> 01:43:10,684 LOTS HAS TO HAPPEN AND PATIENT 2718 01:43:10,751 --> 01:43:11,952 PARTNERS FROM DAY 1 INVOLVED IN 2719 01:43:12,019 --> 01:43:13,453 MEETINGS HELPING WITH ANALYSIS 2720 01:43:13,520 --> 01:43:15,122 AND THINKING ABOUT HOW TO DO 2721 01:43:15,188 --> 01:43:16,790 THINGS THAT WERE ESSENTIAL IN 2722 01:43:16,857 --> 01:43:18,926 WORK WE DID AND WEREN'T DATA 2723 01:43:18,992 --> 01:43:20,761 POINTS BUT INVESTIGATORS WITH 2724 01:43:20,827 --> 01:43:21,094 US. 2725 01:43:21,161 --> 01:43:23,463 WE RESULTED IN FIRST VALIDATED 2726 01:43:23,530 --> 01:43:26,333 DISEASE SPECIFIC PRO AND VAS 2727 01:43:26,400 --> 01:43:27,834 CLIETSDZ THAT IS BEING 2728 01:43:27,901 --> 01:43:29,069 IMPLEMENTED IN CLINICAL TRIALS 2729 01:43:29,136 --> 01:43:31,705 AND PAPER PUBLISHED A FEW YEARS 2730 01:43:31,772 --> 01:43:33,840 AGO AND OTHER PAPERS WITH IT AND 2731 01:43:33,907 --> 01:43:35,475 SERIES OF PATIENT PARTNERS THAT 2732 01:43:35,542 --> 01:43:37,044 WERE PART OF THE WORK WE DID 2733 01:43:37,110 --> 01:43:40,981 THAT WAS ESSENTIAL AND PATIENT 2734 01:43:41,048 --> 01:43:43,617 POWER REED SEARCH NETWORK VPPRN 2735 01:43:43,684 --> 01:43:46,486 IS A COMMON -- IT IS FORMED BY 2736 01:43:46,553 --> 01:43:50,257 VAS CLIETS CLINICAL RESEARCH 2737 01:43:50,324 --> 01:43:52,526 CONSORTIUM AND VAS CLIETS 2738 01:43:52,593 --> 01:43:54,061 FOUNDATION THAT CAME TOGETHER 2739 01:43:54,127 --> 01:43:56,964 STIMULATE BID PECK CORI CALL FOR 2740 01:43:57,030 --> 01:43:59,466 PROPOSALS AND WE HAD A 2741 01:43:59,533 --> 01:44:00,901 PARTNERSHIP BETWEEN TWO 2742 01:44:00,968 --> 01:44:02,202 ORGANIZATIONS THAT IS RESEARCH 2743 01:44:02,269 --> 01:44:04,271 ARM VAS CLIETS FOUNDATION THAT 2744 01:44:04,338 --> 01:44:07,674 IS WORLD'S LEADING PATIENT 2745 01:44:07,741 --> 01:44:09,843 ADVOES ASSCY GROUP IN VAS CLIETS 2746 01:44:09,910 --> 01:44:12,613 AND VERY GOOD SYMBIOTIC 2747 01:44:12,679 --> 01:44:13,380 RELATIONSHIP AND SEE ALREADY 2748 01:44:13,447 --> 01:44:14,982 FROM THE BEGINNING THERE WAS 2749 01:44:15,048 --> 01:44:17,818 PATIENT ENGAGEMENT WHO ARE WE? 2750 01:44:17,884 --> 01:44:20,053 PATIENTS AND RESEARCHERS 2751 01:44:20,120 --> 01:44:22,956 CLINICIANS ADVOCATES AND FAMILY 2752 01:44:23,023 --> 01:44:24,491 MEMBERS AND WORK TOGETHER TO 2753 01:44:24,558 --> 01:44:26,593 IMPROVE LIVES OF PATIENTS WITH 2754 01:44:26,660 --> 01:44:28,829 VAS CLIETS THROUGH ONLINE 2755 01:44:28,895 --> 01:44:32,499 CLINICAL RESEARCH AND I'M CO-PI 2756 01:44:32,566 --> 01:44:34,368 WITH JENNIFER GARDEN THIS IS NOT 2757 01:44:34,434 --> 01:44:36,236 FIRST PI WE HAD WE HAD DIFFERENT 2758 01:44:36,303 --> 01:44:39,172 PATIENT PARTNERS AND WILL TELL 2759 01:44:39,239 --> 01:44:41,141 YOU EACH HAS BEEN FANTASTIC. IT 2760 01:44:41,208 --> 01:44:43,744 HELPS SHE IS A BIT OF A RINGER 2761 01:44:43,810 --> 01:44:47,047 AND PHD LEVEL NEUROSCIENTIST AND 2762 01:44:47,114 --> 01:44:48,949 R01S IN PAST AND COMPANY AND 2763 01:44:49,016 --> 01:44:51,184 GENE THERAPY AND BIT OF A RINGER 2764 01:44:51,251 --> 01:44:53,020 AND REMINDS ME TO REMIND 2765 01:44:53,086 --> 01:44:55,922 EVERYBODY THAT OUR PATIENTS HAVE 2766 01:44:55,989 --> 01:44:56,857 TREMENDOUS TALENT. 2767 01:44:56,923 --> 01:45:00,160 THERE IS -- WE ARE ALL PATIENTS. 2768 01:45:00,227 --> 01:45:03,363 THERE IS GREAT TALIENT OUT 2769 01:45:03,430 --> 01:45:06,233 THERE THAT CAN BRING TO -- FROM 2770 01:45:06,299 --> 01:45:09,102 A PATIENT PERSPECTIVE AND 2771 01:45:09,169 --> 01:45:11,004 DECISIONS TOGETHER AND FISCAL 2772 01:45:11,071 --> 01:45:12,539 DECISIONS FROM FOUNDATION AND 2773 01:45:12,606 --> 01:45:13,874 CHRISTINE YOUNG IS MANAGER AND 2774 01:45:13,940 --> 01:45:15,809 WE HAVE A STAFF THAT IS 2775 01:45:15,876 --> 01:45:17,944 RELATIVELY TO LEAN OPERATION AND 2776 01:45:18,011 --> 01:45:21,081 WE STRIVE TO FIND ANSWERS TO 2777 01:45:21,148 --> 01:45:23,350 QUESTIONS FOR PATIENTS 2778 01:45:23,417 --> 01:45:25,619 PATIENT-CENTERED AND SUCCESSFUL 2779 01:45:25,686 --> 01:45:27,521 WE STUDY EVERY TYPE OF VAS 2780 01:45:27,587 --> 01:45:30,724 CLIETS AND 5,000 PATIENTS 2781 01:45:30,791 --> 01:45:32,025 ENROLLED ONLINE AND THEY 2782 01:45:32,092 --> 01:45:33,827 PROVIDED THIS IS NOT ANONYMOUS 2783 01:45:33,894 --> 01:45:36,163 BUT THEY ARE TELLING US WHO THEY 2784 01:45:36,229 --> 01:45:38,298 ARE AND ARE AVAILABLE FOR 2785 01:45:38,365 --> 01:45:41,201 RESEARCH PROJECTS CONTRIBUTING 2786 01:45:41,268 --> 01:45:42,736 DATA REGULARLY AND ANALYZED 2787 01:45:42,803 --> 01:45:43,704 ACTIVE COMMUNITY OF PEOPLE 2788 01:45:43,770 --> 01:45:45,338 RAISING I WOULD LIKE TO BE PART 2789 01:45:45,405 --> 01:45:47,474 OF RESEARCH AND INVOLVES EVERY 2790 01:45:47,541 --> 01:45:49,276 TYPE OF VAS CLIETS THIS IS A 2791 01:45:49,342 --> 01:45:51,511 LIST NOT UP TO DATE WE CHANGE 2792 01:45:51,578 --> 01:45:53,480 ALL THE TIME AND INVESTIGATORS 2793 01:45:53,547 --> 01:45:56,349 ON LEFT SIDE YOU WILL SEE JUNIOR 2794 01:45:56,416 --> 01:45:57,984 INVESTIGATORS I'M PROUD OF AND 2795 01:45:58,051 --> 01:45:59,419 PROJECTS AND RIGHT IS STAFF AND 2796 01:45:59,486 --> 01:46:02,789 IN MIDDLE YOU WILL SEE THESE ARE 2797 01:46:02,856 --> 01:46:04,591 NAMES OF PEOPLE THAT ARE PATIENT 2798 01:46:04,658 --> 01:46:07,227 RESEARCH PARTNERS ON VARIOUS 2799 01:46:07,294 --> 01:46:08,395 PROJECTS NO THE JUST SAME PEOPLE 2800 01:46:08,462 --> 01:46:10,530 WE PUT OUT A CALL FOR EACH 2801 01:46:10,597 --> 01:46:12,399 PROJECT AND HAVE A COMPLICATED 2802 01:46:12,466 --> 01:46:14,234 SYSTEM THAT PATIENTS HELP US 2803 01:46:14,301 --> 01:46:16,737 SELECT WHO PATIENTS WILL BE FOR 2804 01:46:16,803 --> 01:46:19,873 PARTNERSHIPS AND HAS BEEN 2805 01:46:19,940 --> 01:46:20,474 SUCCESSFUL. 2806 01:46:20,540 --> 01:46:22,476 OUR PROJECTS THEY HAVE TO BE 2807 01:46:22,542 --> 01:46:23,910 SOMETHING IMPORTANT TO PATIENTS 2808 01:46:23,977 --> 01:46:25,445 THEY SAID IS IMPORTANT AND 2809 01:46:25,512 --> 01:46:27,180 PATIENT ENGAGEMENT AND USING 2810 01:46:27,247 --> 01:46:31,184 RESOURCES AND WHAT HAVE WE DONE? 2811 01:46:31,251 --> 01:46:33,653 HAVE 32 PROJECTS 11 COMPLETED 2812 01:46:33,720 --> 01:46:35,589 ONGOING ONES AND HAD OVER 1 2813 01:46:35,655 --> 01:46:38,558 HUNDRED INVESTIGATORS AND 2814 01:46:38,625 --> 01:46:40,761 PATIENT PARTNERS 27 PAPERS 2815 01:46:40,827 --> 01:46:45,766 IMPORTANT METRIC AND MULTIPLE 2816 01:46:45,832 --> 01:46:47,768 GRANTS HAVE BEEN AWARDED TO 2817 01:46:47,834 --> 01:46:51,404 JUNIOR AND SENIOR INVESTIGATORS 2818 01:46:51,471 --> 01:46:59,479 AND OTHERS. 2819 01:46:59,546 --> 01:47:03,383 EVERY PAPER NEEDS REQUIREMENTS 2820 01:47:03,450 --> 01:47:11,925 AND GIVING EXAMPLE THIS IS AERMY 2821 01:47:11,992 --> 01:47:16,363 COUPLE YEARS AGO STUDY WEEKS AND 2822 01:47:16,429 --> 01:47:20,000 MONTHS AND YEARS FOR BAD 2823 01:47:20,066 --> 01:47:24,037 DISEASES TOCH 3 TOP SURVEY 2824 01:47:24,104 --> 01:47:27,374 PATIENTS WHAT YOU WANT US TO 2825 01:47:27,440 --> 01:47:30,377 STUDY AND DO WORK ON THIS AND 2826 01:47:30,443 --> 01:47:33,647 HIGHLY CITED REPORT THAT WE 2827 01:47:33,713 --> 01:47:35,982 PUBLISHED SEVERAL YEARS AGO 2828 01:47:36,049 --> 01:47:38,218 INTERESTINGLY THIS REPORT AND 2829 01:47:38,285 --> 01:47:43,390 PATIENT PARTNERS IN THERE GOT US 2830 01:47:43,456 --> 01:47:45,926 THINKING PRELIMINARY DATA LED US 2831 01:47:45,992 --> 01:47:51,164 TO WORK WITH OTHERS AND DO 2832 01:47:51,231 --> 01:47:55,168 PREDICTIVE ANALYTICS AND BEST 2833 01:47:55,235 --> 01:48:01,508 ACRONYM EVER AND PATIENT 2834 01:48:01,575 --> 01:48:04,945 RESEARCH AND PARTNERS ENGAGED 2835 01:48:05,011 --> 01:48:06,279 AND WOULDN'T HAVE HAPPENED 2836 01:48:06,346 --> 01:48:09,883 WITHOUT FIRST STUDY THAT 2837 01:48:09,950 --> 01:48:13,353 INSPIRED THIS. 2838 01:48:13,420 --> 01:48:15,455 CRITERIA FOR RESPONSE TO 2839 01:48:15,522 --> 01:48:19,259 TREATMENT AND VAS CLIETS AND ACR 2840 01:48:19,326 --> 01:48:22,429 IS MAJOR PROFESSIONAL GROUP IN 2841 01:48:22,495 --> 01:48:25,298 UNITED STATES AND EUROPE AND 2842 01:48:25,365 --> 01:48:26,933 AREA OF IMPORTANCE AND 2843 01:48:27,000 --> 01:48:27,868 DEVELOPING OUTCOME MEASURE AND 2844 01:48:27,934 --> 01:48:29,002 THOSE KNOW THEY ARE IMPORTANT TO 2845 01:48:29,069 --> 01:48:32,038 HAVE AND HARD TO DO AND NEARLY 2846 01:48:32,105 --> 01:48:35,475 DONE AND PROJECT PATIENT 2847 01:48:35,542 --> 01:48:36,676 PARTNERS DAY 1 AND DIRECTLY 2848 01:48:36,743 --> 01:48:42,582 INVOLVED IN WORK WE DO AND US 2849 01:48:42,649 --> 01:48:44,885 SIDE AND EUROPEAN SIDE AND 2850 01:48:44,951 --> 01:48:45,919 EXPERT PANEL THAT IS IMPORTANT 2851 01:48:45,986 --> 01:48:51,491 AND ADDING PATIENTS TO THIS VERY 2852 01:48:51,558 --> 01:48:53,126 IMPORTANT AND MULTIPLE COUNTRIES 2853 01:48:53,193 --> 01:48:56,396 INVOLVED IN THIS AND WILL SHOW 2854 01:48:56,463 --> 01:48:58,365 YOU WHY I'M SHOWING YOU TRIAL I 2855 01:48:58,431 --> 01:49:05,939 PUBLISHED A COUPLE MONTHS AGO. 2856 01:49:06,006 --> 01:49:10,543 IMPORTANT STUDY AND SPONSORED BY 2857 01:49:10,610 --> 01:49:15,482 ASTO ZENNICA HAVING A SECOND 2858 01:49:15,548 --> 01:49:16,816 DRUG AND LOTS OF INFORMATION AND 2859 01:49:16,883 --> 01:49:18,285 PROUD OF THE STUDY AND WHAT WE 2860 01:49:18,351 --> 01:49:23,390 DID IN THE MIDDLE IS DID 2861 01:49:23,456 --> 01:49:25,091 QUALITATIVE RESEARCH WITH 2862 01:49:25,158 --> 01:49:27,961 PATIENTS ADDING ANCILLARY STUDY 2863 01:49:28,028 --> 01:49:29,396 UNDERSTANDING PATIENTS 2864 01:49:29,462 --> 01:49:31,131 PERSPECTIVES ON TRIAL OUTCOMES 2865 01:49:31,197 --> 01:49:32,198 FEELING ABOUT BEING PART OF 2866 01:49:32,265 --> 01:49:34,100 TRIAL AND HOW THEY FEEL ABOUT 2867 01:49:34,167 --> 01:49:35,168 OUTCOMES AND PATIENT RESEARCH 2868 01:49:35,235 --> 01:49:39,205 AND PARTNERS PART OF STUDY TEAM 2869 01:49:39,272 --> 01:49:45,679 AND VPR NCN VOLUNTEERED US 2870 01:49:45,745 --> 01:49:47,614 SELECTING PATIENTS TO BE 2871 01:49:47,681 --> 01:49:49,749 INVOLVED WITH ASTO ZEN EBBINGA 2872 01:49:49,816 --> 01:49:53,420 TEAM AND THOSE INVOLVED IN THIS 2873 01:49:53,486 --> 01:49:55,488 AND SEE VARIETY OF WAYS PATIENTS 2874 01:49:55,555 --> 01:49:56,957 ARE INVOLVED IN OUR WORK AND 2875 01:49:57,023 --> 01:49:59,159 MANY WAYS THAT THEY CAN BE 2876 01:49:59,225 --> 01:50:01,227 DIRECTLY ENGAGED IN RESEARCH AND 2877 01:50:01,294 --> 01:50:03,196 DOESN'T HAVE TO BE ALL OR 2878 01:50:03,263 --> 01:50:04,497 NOTHING BUT COULD BE DIFFERENT 2879 01:50:04,564 --> 01:50:06,366 THINGS AND PEOPLE HAVE TO WARM 2880 01:50:06,433 --> 01:50:08,735 UP TO IT AND DEVELOP CULTURE AND 2881 01:50:08,802 --> 01:50:14,074 PRACTICE AND TAKES TIME TO GET 2882 01:50:14,140 --> 01:50:16,309 IT RIGHT ENGAGING PATIENTS WITH 2883 01:50:16,376 --> 01:50:18,878 LIVED EXPERIENCE AND DISEASE AND 2884 01:50:18,945 --> 01:50:20,680 UNDERSTUDY RESEARCH PARTNERS 2885 01:50:20,747 --> 01:50:22,382 DOES MANY THINGS FEASIBLE 2886 01:50:22,449 --> 01:50:23,984 IMPROVING QUALITY OF RESEARCH 2887 01:50:24,050 --> 01:50:28,288 AND ENJOYABLE AND GREAT TO WORK 2888 01:50:28,355 --> 01:50:34,527 WITH PATIENTS MAKING RESEARCH 2889 01:50:34,594 --> 01:50:35,528 BETTER AND WILL END THERE. 2890 01:50:35,595 --> 01:50:37,897 >> THANK YOU, PETER. I THINK IN 2891 01:50:37,964 --> 01:50:40,667 TERMS OF HEALTH OF THE COUNTRY 2892 01:50:40,734 --> 01:50:42,369 YOUR COMMENTS ARE WORTH YOUR 2893 01:50:42,435 --> 01:50:45,638 DIVERSION FROM CLINIC TO JOIN 2894 01:50:45,705 --> 01:50:48,942 US. THANK YOU. 2895 01:50:49,009 --> 01:50:51,878 ANY QUESTIONS? ANY HANDS? 2896 01:50:51,945 --> 01:50:56,716 DON'T SEE ANY. 2897 01:50:56,783 --> 01:50:57,784 >> THAT WAS CLEAR. 2898 01:50:57,851 --> 01:51:00,720 >> GREAT. AMY, NOT FAR FROM 2899 01:51:00,787 --> 01:51:05,959 THESE SHE IS AN INTERNATIONALLY 2900 01:51:06,026 --> 01:51:09,129 RECOGNIZED PATIENT ADVOCATOR 2901 01:51:09,195 --> 01:51:11,531 LEADER SPEAKER AUTHOR EDUCATOR 2902 01:51:11,598 --> 01:51:14,401 AND LEADER IN PATIENT PARTNER 2903 01:51:14,467 --> 01:51:16,803 RESEARCH AND ENGAGEMENT EARNING 2904 01:51:16,870 --> 01:51:18,872 BA IN UNIVERSITY OF CALIFORNIA 2905 01:51:18,938 --> 01:51:21,074 AND MBA FROM PERDUE AND FORMER 2906 01:51:21,141 --> 01:51:23,476 COUNCIL MEMBER AND IS NOW THE 2907 01:51:23,543 --> 01:51:26,012 PRESIDENT AND CEO OF HEALTHY 2908 01:51:26,079 --> 01:51:27,981 MOTIVATION AND EDUCATION AND 2909 01:51:28,048 --> 01:51:30,283 ADVOCACY CONSULTING FIRM IN 2910 01:51:30,350 --> 01:51:34,154 SANTA BARBARA AND DIAGNOSED WITH 2911 01:51:34,220 --> 01:51:36,122 RHEUMATOID ARTHRITIS AT 18 AND 2912 01:51:36,189 --> 01:51:39,559 HAD OSTEO POROSIS AND SPENT 5 2913 01:51:39,626 --> 01:51:41,494 YEARS IN WHEELCHAIR AND 2914 01:51:41,561 --> 01:51:44,731 UNDERWENT 22 SURGERIES WITH 2915 01:51:44,798 --> 01:51:46,032 JOINT REPLACEMENTS AFTER THAT 2916 01:51:46,099 --> 01:51:48,268 DEVELOPED AS A RUMENT DEVELOPED 2917 01:51:48,334 --> 01:51:49,736 AMERICA'S LARGEST NETWORK OF 2918 01:51:49,803 --> 01:51:51,404 YOUNG ADULT ARTHRITIS EDUCATION 2919 01:51:51,471 --> 01:51:56,776 AND ADVOCACY PROGRAMS STARTED A 2920 01:51:56,843 --> 01:51:59,079 CONSULTING FIRM HEALTHY 2921 01:51:59,145 --> 01:52:02,082 MOTIVATION THAT HAS BECOME 2922 01:52:02,148 --> 01:52:05,452 RESPECTED MEDICAL AND 2923 01:52:05,518 --> 01:52:12,058 MOTIVATIONAL SPEAK ER ADVOCATE 2924 01:52:12,125 --> 01:52:15,161 ADVISOR FACILITATOR HUMAN 2925 01:52:15,228 --> 01:52:19,065 RESOURCE STRATEGIES ADVISING FDA 2926 01:52:19,132 --> 01:52:21,501 CRITICAL PATH PROGRAM PECK CORI 2927 01:52:21,568 --> 01:52:24,904 AGENCY HEALTH RESEARCH AND 2928 01:52:24,971 --> 01:52:27,540 QUALITY AND ENJOYING DECADE 2929 01:52:27,607 --> 01:52:30,143 OUTCOME MEASURES RHEUMATOLOGY 2930 01:52:30,210 --> 01:52:33,513 AND NIH DIRECTOR'S COUNCIL OF 2931 01:52:33,580 --> 01:52:36,216 PATIENT REPRESENTATIVE AND AMONG 2932 01:52:36,282 --> 01:52:39,919 HONORS WAS AWARDED PRESIDENT 2933 01:52:39,986 --> 01:52:43,189 SERVICE AWARD BY PRESIDENT 2934 01:52:43,256 --> 01:52:45,258 GEORGE BUSH AMERICA'S HIGHEST 2935 01:52:45,325 --> 01:52:48,728 HONOR FOR COMMUNITY SERVICE AND 2936 01:52:48,795 --> 01:52:52,031 KEY OPINION LEADER MUSCULOCARE 2937 01:52:52,098 --> 01:52:53,766 REPAIR PATIENT ENGAGEMENT 2938 01:52:53,833 --> 01:52:55,935 RESEARCH CARE AND PATIENT 2939 01:52:56,002 --> 01:52:58,171 ADVOCACY IN COMMUNICATIONS AND 2940 01:52:58,238 --> 01:52:59,873 WE HAVE BEEN AT THIS TOGETHER 2941 01:52:59,939 --> 01:53:00,907 FOR A LONG TIME AND LOOK FORWARD 2942 01:53:00,974 --> 01:53:04,944 TO HEARING WHAT YOU HAVE TO SAY 2943 01:53:05,011 --> 01:53:10,116 TODAY. THANK YOU. 2944 01:53:10,183 --> 01:53:11,184 >> I DON'T HEAR ANY. 2945 01:53:11,251 --> 01:53:17,490 >> YOU ARE MUTED, AMY. 2946 01:53:17,557 --> 01:53:25,532 >> >> HOY ABOUT NOW. 2947 01:53:25,598 --> 01:53:26,366 >> GOT IT. 2948 01:53:26,432 --> 01:53:29,035 >> GREAT. THANK SO YOU MUCH, 2949 01:53:29,102 --> 01:53:30,770 BOB. WE GO A LONG WAY AND I WAS 2950 01:53:30,837 --> 01:53:35,108 IN THE CLASS OF 99 THAT IS 2951 01:53:35,175 --> 01:53:38,111 GRADUATION CLASS OF NIAMS 2952 01:53:38,178 --> 01:53:41,514 ADVISORY COUNCIL AND MUST SAY TO 2953 01:53:41,581 --> 01:53:45,051 CREDIT OF DR. CRISWELL I RECALL 2954 01:53:45,118 --> 01:53:47,053 MANY TIMES DURING ADVISORY 2955 01:53:47,120 --> 01:53:50,056 COUNCIL MEETINGS EVER SO LONG 2956 01:53:50,123 --> 01:53:52,425 AGO THAT CONCEPTS OF BUDGETS 2957 01:53:52,492 --> 01:53:54,827 WERE LESS THAN 10 MINUTES IN 2958 01:53:54,894 --> 01:53:57,730 CONVERSATION OUT OF A DAY-LONG 2959 01:53:57,797 --> 01:54:00,967 MEETING AND HAVING THAT LEVEL OF 2960 01:54:01,034 --> 01:54:03,670 DETAIL AS AN IMPORTANT SUBJECT 2961 01:54:03,736 --> 01:54:06,439 MATTER FOR YOU ALL TO DISCUSS IS 2962 01:54:06,506 --> 01:54:07,440 EXTREMELY IMPORTANT. 2963 01:54:07,507 --> 01:54:15,181 I CREDIT YOUR LEADERSHIP FOR 2964 01:54:15,248 --> 01:54:18,284 THAT AND 27 YEARS LATER I'M 2965 01:54:18,351 --> 01:54:20,386 HARDENED BY TYPES OF INITIATIVES 2966 01:54:20,453 --> 01:54:22,589 BRANDED WITH VARIETY OF 2967 01:54:22,655 --> 01:54:23,756 DIFFERENT NAMES THAT HAVEN'T 2968 01:54:23,823 --> 01:54:25,325 CHANGED AND WE DON'T UNDERSTAND 2969 01:54:25,391 --> 01:54:28,361 THEM AND REMEMBER WHAT THEY 2970 01:54:28,428 --> 01:54:33,099 STAND FOR BUT WHAT THEY ARE DOG 2971 01:54:33,166 --> 01:54:39,172 IS SO GOOD AND THANK YOU FOR 2972 01:54:39,239 --> 01:54:40,673 YOUR LEADERSHIP IT IS A LEISURE 2973 01:54:40,740 --> 01:54:43,443 TO BE HERE TO SUPPORT TWO GREAT 2974 01:54:43,509 --> 01:54:46,646 COLLEAGUES AND PETER I HAVE 2975 01:54:46,713 --> 01:54:47,947 KNOWN YOU FOR A LONG TIME 2976 01:54:48,014 --> 01:54:50,250 WORKING AT INTERNATIONAL LEVEL 2977 01:54:50,316 --> 01:54:57,690 AND WE GO BACK SUCH A LONG WAY 2978 01:54:57,757 --> 01:55:00,827 IT IS GOOD TO SEE IN SOME WAYS 2979 01:55:00,893 --> 01:55:03,930 DOING WHAT I USED TO DO AND 2980 01:55:03,997 --> 01:55:06,633 CALLING HER MY LITTLE SISTER IN 2981 01:55:06,699 --> 01:55:09,168 PATIENT ENGAGEMENT HAS DONE A 2982 01:55:09,235 --> 01:55:10,670 GREAT JOB WUS AND EXPOSURE WE 2983 01:55:10,737 --> 01:55:14,807 NEED TO TALK ABOUT PE PATIENT 2984 01:55:14,874 --> 01:55:18,144 ENGAGEMENT AT A SYSTEMIC LECHL. 2985 01:55:18,211 --> 01:55:20,146 I KNOW THAT CONCERN AND INTEREST 2986 01:55:20,213 --> 01:55:23,950 IS WITHIN NIAMS THAT IS WHERE MY 2987 01:55:24,017 --> 01:55:27,520 ATTENTION IS GOING TO BE DRAWN 2988 01:55:27,587 --> 01:55:31,491 AND BOB ASKED ME TO LOOK AND 2989 01:55:31,557 --> 01:55:33,126 TALK ABOUT WHAT IS GOING ON IN 2990 01:55:33,192 --> 01:55:35,628 THE FIELD AND PATIENT ENGAGEMENT 2991 01:55:35,695 --> 01:55:37,764 AND HOW IMPORTANT IT IS WHO IS 2992 01:55:37,830 --> 01:55:41,467 DOING IT BETTER OR WORSE AND WHO 2993 01:55:41,534 --> 01:55:49,242 TRIED WHAT TALKING ABOUT THAT 2994 01:55:49,309 --> 01:55:51,477 AND EXPERIENCE I WILL SHARE WITH 2995 01:55:51,544 --> 01:55:55,415 YOU TODAY IS INFORMED BY ALL OF 2996 01:55:55,481 --> 01:56:03,623 THESE ORGANIZATIONS I HAVE BEEN 2997 01:56:03,690 --> 01:56:06,726 ASKED TO PARTICIPATE IN AND 2998 01:56:06,793 --> 01:56:10,029 COMPETED TO PARTICIPATE IN 2999 01:56:10,096 --> 01:56:14,834 VOLUNTEERED TO PAFRPT IN 3000 01:56:14,901 --> 01:56:17,236 INTERNATIONAL LECHLS TO UN DOWN 3001 01:56:17,303 --> 01:56:18,638 TO LOCAL LEVEL AND OPPORTUNITY 3002 01:56:18,705 --> 01:56:28,815 FOR PATIENT LIKE ME WITH 3003 01:56:28,881 --> 01:56:31,551 MULTIPLE LEVELS AND I COULD NOT 3004 01:56:31,617 --> 01:56:34,954 WALK OR BRING A SPOON TO MY 3005 01:56:35,021 --> 01:56:38,758 MOUTH TO EAT THIS IS FROM COMING 3006 01:56:38,825 --> 01:56:41,627 FROM A FAMILY WITH NO HISTORY OF 3007 01:56:41,694 --> 01:56:44,263 INFLAMMATORY ARTHRITIS 3008 01:56:44,330 --> 01:56:46,799 WHATSOEVER AND ASIAN 4TH 3009 01:56:46,866 --> 01:56:47,567 GENERATION FAMILY THAT DOESN'T 3010 01:56:47,633 --> 01:56:49,035 TALK ABOUT WHAT AIMS THEM. 3011 01:56:49,102 --> 01:56:53,206 FOR THE EARLY DAYS OF MY LIFE I 3012 01:56:53,272 --> 01:56:59,078 HAD TO TALK ABOUT STAIRS I FELL 3013 01:56:59,145 --> 01:57:01,981 DOWN WHEN WEARING A NECK BRACE 3014 01:57:02,048 --> 01:57:03,182 NOT BECAUSE I FELL DOWN THE 3015 01:57:03,249 --> 01:57:05,251 STAIRS BUT COULDN'T TALK ABOUT A 3016 01:57:05,318 --> 01:57:08,287 DISEASE STATE THEY COULDN'T 3017 01:57:08,354 --> 01:57:08,688 UNDERSTAND. 3018 01:57:08,755 --> 01:57:19,298 NEXT SLIDE, PLEASE -- AS WELL AS 3019 01:57:34,647 --> 01:57:35,982 SCHOOL OF HARD KNOCKNOCHL I WENT 3020 01:57:36,048 --> 01:57:37,750 THROUGH IN TERMS OF BEING 3021 01:57:37,817 --> 01:57:40,853 MEMBERS AND NOTING WHERE I HAVE 3022 01:57:40,920 --> 01:57:44,357 BEEN A MEMBER AND CREATION OF 3023 01:57:44,424 --> 01:57:47,193 PROCEDURES AND STRATEGIES TO 3024 01:57:47,260 --> 01:57:49,996 ENGAGE PATIENTS AND DEVELOP A 3025 01:57:50,062 --> 01:57:53,599 SYSTEMATIC WAY TO ENGAGE 3026 01:57:53,666 --> 01:58:00,840 PATIENTS AND CURSIORY AT TOP 3027 01:58:00,907 --> 01:58:04,510 SUES AND PETER MENTIONED THIS IS 3028 01:58:04,577 --> 01:58:15,121 SITUATION FUNDED BY RESEARCH AND 3029 01:58:16,489 --> 01:58:18,257 TARGETED YOU KNOW NOT A 3030 01:58:18,324 --> 01:58:20,026 REQUIREMENT THAT PATIENTS BE 3031 01:58:20,092 --> 01:58:21,828 INVOLVED AND QUESTION BECOMES 3032 01:58:21,894 --> 01:58:23,830 HOW I FIND RIGHT PATIENTS AND 3033 01:58:23,896 --> 01:58:25,965 FIND PATIENTS WITH EXPERIENCE 3034 01:58:26,032 --> 01:58:30,336 AND SCIENCE THAT CAN ARTICULATE 3035 01:58:30,403 --> 01:58:34,407 THEIR DISEASE OR EXPERIENCE OF 3036 01:58:34,474 --> 01:58:39,445 DISEASE IN WAY TO BE HELPFUL TO 3037 01:58:39,512 --> 01:58:46,352 MOVE FORWARD PEK ORRI IS PLACE 3038 01:58:46,419 --> 01:58:55,461 THAT AGREE AND PECK ORRI 3039 01:58:55,528 --> 01:58:57,597 AMBASSADOR MY JOB IS EXPLAINING 3040 01:58:57,663 --> 01:58:58,998 WHAT PEK ORRI IS ABOUT 3041 01:58:59,065 --> 01:59:04,737 EXPLAINING WHY WE DO WHAT WE DO 3042 01:59:04,804 --> 01:59:07,673 AND HOW IMPORTANT IT IS SUBJECT 3043 01:59:07,740 --> 01:59:12,144 MATTER MATTERS TO PATIENTS AND 3044 01:59:12,211 --> 01:59:15,448 TOPICS WILL MATTER. 3045 01:59:15,515 --> 01:59:18,317 BLOOD AND TESTS AND X-RAY TESTS 3046 01:59:18,384 --> 01:59:21,287 MATTER IN SOME WAYS AT CURSORY 3047 01:59:21,354 --> 01:59:24,223 LEVEL YES AND DEVELOPMENT STAGES 3048 01:59:24,290 --> 01:59:27,193 MAYBE NOT MAYBE THERE ARE 3049 01:59:27,260 --> 01:59:33,766 PATIENTS OUT THERE THAT ARE 3050 01:59:33,833 --> 01:59:35,902 X-RAY TECHNICIANS AND THERE ARE 3051 01:59:35,968 --> 01:59:37,436 ALL DIFFERENT KINDS OF PATIENTS 3052 01:59:37,503 --> 01:59:40,706 THAT ARE IMPORTANT TO SIT AT THE 3053 01:59:40,773 --> 01:59:42,508 VEMMENT TABLE FROM CONCEPT TO 3054 01:59:42,575 --> 01:59:44,577 IMPLEMENTATION TO WRITE UP TO 3055 01:59:44,644 --> 01:59:48,114 DISSEMINATION AND ANALYSIS AND 3056 01:59:48,180 --> 01:59:54,320 MORE THERE ARE THOSE PATIENTS I 3057 01:59:54,387 --> 01:59:57,023 HAVE BEEN AND SUES AN HAS BEEN 3058 01:59:57,089 --> 02:00:01,794 PATIENT AND MANY OTHERS AND BULK 3059 02:00:01,861 --> 02:00:03,696 OF PATIENT PARTNERS ARE DISEASE 3060 02:00:03,763 --> 02:00:06,098 SPECIFIC AND TOPIC SPECIFIC AND 3061 02:00:06,165 --> 02:00:09,969 MIGHT BE JOINT REPLACEMENTS AND 3062 02:00:10,036 --> 02:00:13,639 THOSE THINGS THAT ARE VERY 3063 02:00:13,706 --> 02:00:15,308 SPECIFIC TO THAT PARTICULAR 3064 02:00:15,374 --> 02:00:19,178 TOPIC AND FINDING THEM IS A BIG 3065 02:00:19,245 --> 02:00:23,849 KEY TALKING ABOUT WHAT IS 3066 02:00:23,916 --> 02:00:27,186 HAPPENING AT FDA LEVEL AND 3067 02:00:27,253 --> 02:00:30,690 SUBJECT THAT YOU WILL ADDRESS 3068 02:00:30,756 --> 02:00:31,557 AFTER PRESENTATIONS AND 3069 02:00:31,624 --> 02:00:34,093 DISCUSSIONS AND FDA LEVEL HAS 3070 02:00:34,160 --> 02:00:35,494 BEEN STRONG IN THE 3071 02:00:35,561 --> 02:00:39,599 PHARMACEUTICAL SIDE AND ALSO THE 3072 02:00:39,665 --> 02:00:47,173 CDRH SIDE CENTER FOR RADIATION. 3073 02:00:47,239 --> 02:00:49,575 ANYWAY CDRH YOU KNOW WHAT IT 3074 02:00:49,642 --> 02:00:52,311 MEANS EXCUSE ME SKIPPED MY MIND 3075 02:00:52,378 --> 02:00:57,249 EVEN THOUGH I'M ADVISOR TO THEM. 3076 02:00:57,316 --> 02:00:59,185 THEY CAME UP WITH VERY FIRST 3077 02:00:59,251 --> 02:01:03,356 PATIENT ENGAGEMENT ADVISORY 3078 02:01:03,422 --> 02:01:06,392 COMMITTEE SUSAN AND I HAVE HONOR 3079 02:01:06,459 --> 02:01:07,393 SERVING FIRST GENERATION OF THAT 3080 02:01:07,460 --> 02:01:12,565 AND AS THIS IS GOING ON WE ARE 3081 02:01:12,632 --> 02:01:15,801 ADDRESSING AT THIS POINT OF TIME 3082 02:01:15,868 --> 02:01:16,869 STRATEGIC DISCUSSIONS AND 3083 02:01:16,936 --> 02:01:18,904 STRATEGY AND HAVE NOT GOTTEN 3084 02:01:18,971 --> 02:01:20,439 INTO IMPLEMENTATION AND 3085 02:01:20,506 --> 02:01:21,841 ANSWERING QUESTION WHAT 3086 02:01:21,907 --> 02:01:32,385 SPECIFICALLY FDA WILL DO AT 3087 02:01:34,453 --> 02:01:37,490 SYSTEMS LEVEL AND BEING CONVENOR 3088 02:01:37,556 --> 02:01:41,494 OF VARIETY OF SYSTEMS PETER 3089 02:01:41,560 --> 02:01:44,063 TALKED ABOUT WELL ESTABLISHED 3090 02:01:44,130 --> 02:01:45,631 INTERNATIONAL AND NATIONAL VAS 3091 02:01:45,698 --> 02:01:52,571 CLIETS PATIENT POWERED NETWORK 3092 02:01:52,638 --> 02:01:59,478 COULD IT BE OVERLAYS IN MULTIPLE 3093 02:01:59,545 --> 02:02:01,981 DISEASE TOPICS TALKING ABOUT 3094 02:02:02,048 --> 02:02:05,351 NATIONAL TOPICS I WILL TOUCH ON 3095 02:02:05,418 --> 02:02:09,221 A COUPLE BEING RESPONSIBLE THE 3096 02:02:09,288 --> 02:02:13,859 LAST PETER SAID WE HAVE NOT SEEN 3097 02:02:13,926 --> 02:02:16,028 MANY ARTICLES ON PATIENT 3098 02:02:16,095 --> 02:02:22,301 ENGAGEMENT BEFORE 20 YEARS AGO. 3099 02:02:22,368 --> 02:02:23,636 IF THEY WERE COMING OUT 3100 02:02:23,703 --> 02:02:34,113 INFORMATION WAS 1999 TO 2002 AND 3101 02:02:34,180 --> 02:02:35,815 PATIENTS INVOLVED EVERY STEP OF 3102 02:02:35,881 --> 02:02:37,650 WAY AND RESEARCH AND WRITE-UPS 3103 02:02:37,717 --> 02:02:41,187 AND FLAIR TO THEM AND NATIONAL 3104 02:02:41,253 --> 02:02:42,388 HEALTH COUNCIL DUG DEEPER AND 3105 02:02:42,455 --> 02:02:45,458 DEVELOPED TOOLS TO HELP 3106 02:02:45,524 --> 02:02:47,193 RESEARCHERS LIKE YOURSELF BETTER 3107 02:02:47,259 --> 02:02:51,697 LOOK AT PATIENTS THAT MIGHT BE A 3108 02:02:51,764 --> 02:02:53,766 POTENTIAL PATIENT PARTNER 3109 02:02:53,833 --> 02:02:56,435 RESEARCH PATIENT RESEARCH 3110 02:02:56,502 --> 02:02:58,270 PARTNER THINGS LIKE HOW TO VALUE 3111 02:02:58,337 --> 02:03:02,408 TIME AND WHAT THEY WILL BE DOING 3112 02:03:02,475 --> 02:03:04,477 IS THERE TRANSPORTATION 3113 02:03:04,543 --> 02:03:04,877 INVOLVED? 3114 02:03:04,944 --> 02:03:06,512 THERE IS CHEAT SHEETS I WOULD 3115 02:03:06,579 --> 02:03:08,948 CALL THEM FOR YOU TO FILL OUT AS 3116 02:03:09,014 --> 02:03:11,183 AN INVESTIGATOR ON THE NATIONAL 3117 02:03:11,250 --> 02:03:18,691 HEALTH COUNCIL'S WEBSITE THAT 3118 02:03:18,758 --> 02:03:21,260 COULD HELP YOU AND WHAT YOU WILL 3119 02:03:21,327 --> 02:03:27,566 DO PRECURSOR HOW YOU WILL 3120 02:03:27,633 --> 02:03:35,941 COMPENSATE AND MOVEMENT THERE IS 3121 02:03:36,008 --> 02:03:38,277 CHEAT SHEETS TO HELP YOU 3122 02:03:38,344 --> 02:03:39,912 DETERMINE WHAT A PATIENT 3123 02:03:39,979 --> 02:03:41,914 RESEARCH PARTNER MIGHT BE ABLE 3124 02:03:41,981 --> 02:03:43,516 TO DO FOR THE ORGANIZATION. 3125 02:03:43,582 --> 02:03:46,952 YOU CAN BUDGET APPROPRIATELY. 3126 02:03:47,019 --> 02:03:49,889 FASTER CURES IS AN OTHER 3127 02:03:49,955 --> 02:03:51,157 ORGANIZATION AND MICHAEL MILTON 3128 02:03:51,223 --> 02:03:54,560 ORGANIZATION AND THEY HAVE 3129 02:03:54,627 --> 02:03:59,165 DEVELOPED A FEW WHITE PAPERS 3130 02:03:59,231 --> 02:04:00,766 INCREASING DIVERSITY AND 3131 02:04:00,833 --> 02:04:02,535 CLINICAL TRIALS STRONG ELEMENT 3132 02:04:02,601 --> 02:04:04,270 OF PATIENT ENGAGEMENT AND IN 3133 02:04:04,336 --> 02:04:06,038 ADDITION TO THAT THEY COME OUT 3134 02:04:06,105 --> 02:04:08,307 VERY SOON AND HAVE BEEN PART OF 3135 02:04:08,374 --> 02:04:10,242 THAT VERY SOON WITH ANOTHER 3136 02:04:10,309 --> 02:04:12,178 WHITE PAPER, A SEPARATE WHITE 3137 02:04:12,244 --> 02:04:14,713 PAPER ON PATIENT ENGAGEMENT AND 3138 02:04:14,780 --> 02:04:16,315 TRYING TO GET A SCOPE WHAT IS 3139 02:04:16,382 --> 02:04:20,052 GOING ON AND WHERE THE NATIONAL 3140 02:04:20,119 --> 02:04:21,554 NEEDS MIGHT BE. 3141 02:04:21,620 --> 02:04:24,423 C PAL CENTER FOR PATIENT 3142 02:04:24,490 --> 02:04:26,358 ADVOCACY LEADERS I'M A PRINCIPLE 3143 02:04:26,425 --> 02:04:30,062 AND THIS IS AN ORGANIZATION OF 3144 02:04:30,129 --> 02:04:32,231 MULTIPLE DISEASES MULTIPLE 3145 02:04:32,298 --> 02:04:35,167 LEVELS OF PATIENT ENGAGERS ALL 3146 02:04:35,234 --> 02:04:36,702 VOLUNTEERS AND/OR STAFF PEOPLE 3147 02:04:36,769 --> 02:04:46,111 OF NON-PROFIT ORGANIZATIONS OUR 3148 02:04:46,178 --> 02:04:48,380 JOB INFORMING THEM OF LATEST 3149 02:04:48,447 --> 02:04:50,216 ISSUES AND PROCESSES AND 3150 02:04:50,282 --> 02:04:52,885 ENGAGEMENT HAS BEEN ON TIP OF 3151 02:04:52,952 --> 02:04:55,187 TONGUE IN WORK THAT CPALS HAS 3152 02:04:55,254 --> 02:04:58,023 DONE AND PARTNERED WITH VARIETY 3153 02:04:58,090 --> 02:05:02,494 OF DIFFERENT HEALTH CONSULTANCY 3154 02:05:02,561 --> 02:05:04,129 ORGANIZATIONS AND COMMERCIAL 3155 02:05:04,196 --> 02:05:06,765 VENTURES TO DEVELOP ACROSS 3156 02:05:06,832 --> 02:05:08,634 DISEASE KINDS OF MODELS FOR 3157 02:05:08,701 --> 02:05:13,572 THESE GROUPS TO MOVE FORWARD 3158 02:05:13,639 --> 02:05:15,140 WITH I MENTION ARTHRITIS 3159 02:05:15,207 --> 02:05:17,276 FOUNDATION. I HAVE A HOME THERE 3160 02:05:17,343 --> 02:05:21,947 AND BEEN A MEMBER FIRST A 3161 02:05:22,014 --> 02:05:25,584 RECIPIENT OF SUPPORT AND PROGRAM 3162 02:05:25,651 --> 02:05:28,220 TO SHARE FOR THIS FOUNDATION AND 3163 02:05:28,287 --> 02:05:29,321 IN CALIFORNIA AND REPRESENTING 3164 02:05:29,388 --> 02:05:33,158 THEM AT A VARIETY OF DIFFERENT 3165 02:05:33,225 --> 02:05:35,194 ACTIVITIES AND THAT THE CITIES 3166 02:05:35,261 --> 02:05:36,562 IMPORTANTLY IS ABOUT THE 3167 02:05:36,629 --> 02:05:38,931 ADVOCACY AND AND TRAINING OF 3168 02:05:38,998 --> 02:05:40,866 PATIENTS TO BECOME ADVOCATES AND 3169 02:05:40,933 --> 02:05:43,102 TRAINING ADVOCATES TO BECOME 3170 02:05:43,168 --> 02:05:46,272 BETTER AND STRONGER ADVOCATES TO 3171 02:05:46,338 --> 02:05:48,407 GO BEFORE CONGRESSIONAL HEARINGS 3172 02:05:48,474 --> 02:05:52,678 AND NIAMS HEARINGS AND THINGS 3173 02:05:52,745 --> 02:05:56,682 LIKE THAT RULE OF NATIONAL 3174 02:05:56,749 --> 02:05:58,183 NON-PROFIT PROJECTS IS EXTREMELY 3175 02:05:58,250 --> 02:06:01,854 IMPORTANT AND OTHER SIDE IS 3176 02:06:01,921 --> 02:06:11,163 INTERNATIONAL I TAKE EFRD-BASED 3177 02:06:11,230 --> 02:06:15,301 EXAMPLE 1992 AND TAKING 3178 02:06:15,367 --> 02:06:18,704 INTERNATIONAL RESEARCH DEVOTED 3179 02:06:18,771 --> 02:06:20,806 TO RHEUMATOLOGY AND OUTCOME 3180 02:06:20,873 --> 02:06:23,075 MEASURES TO REALIZE WHO IS 3181 02:06:23,142 --> 02:06:25,044 MISSING AT THE TABLE AND WHO IS 3182 02:06:25,110 --> 02:06:27,413 MISSING IS PATIENT PARTNERS AND 3183 02:06:27,479 --> 02:06:29,181 SLOWLY, AGAIN, NOT 3184 02:06:29,248 --> 02:06:31,250 SYSTEMATICALLY BUT SLOWLY 3185 02:06:31,317 --> 02:06:32,217 INVITATIONS WERE SENT TO PEOPLE 3186 02:06:32,284 --> 02:06:33,419 LIKE ME. 3187 02:06:33,485 --> 02:06:34,453 I WAS IN THE FIRST GROUP. 3188 02:06:34,520 --> 02:06:36,622 I MUST SAY THAT AT FIRST MEETING 3189 02:06:36,689 --> 02:06:39,558 OF PATIENT RESEARCH PARTNERS, 3190 02:06:39,625 --> 02:06:43,162 PRPS WAS DONE TOTALLY SEPARATE 3191 02:06:43,228 --> 02:06:45,998 FROM OUR RESEARCHER GROUPS THAT 3192 02:06:46,065 --> 02:06:47,466 IS 2 HUNDRED OTHER PEOPLE PRETTY 3193 02:06:47,533 --> 02:06:49,601 MUCH AND WE WERE MEETING OUTSIDE 3194 02:06:49,668 --> 02:06:52,137 UNDER A PALM TREE IN AUSTRALIA 3195 02:06:52,204 --> 02:06:57,076 AND YOU KNOW THAT THEY HAD PALM 3196 02:06:57,142 --> 02:06:58,711 TREES IN AUSTRALIA AND ALL 3197 02:06:58,777 --> 02:07:00,512 INVESTIGATORS WERE MEETING 3198 02:07:00,579 --> 02:07:03,048 INSIDE. 3199 02:07:03,115 --> 02:07:06,485 THERE WAS SEPARATE AND HAD A 3200 02:07:06,552 --> 02:07:07,953 FOCUS GROUP INTERESTING START 3201 02:07:08,020 --> 02:07:10,689 AND WE DO NOT USE THAT MODEL 3202 02:07:10,756 --> 02:07:11,190 ANYMORE. 3203 02:07:11,256 --> 02:07:13,325 PETER HAS ARTICULATED SO WELL 3204 02:07:13,392 --> 02:07:16,528 NOW IT IS LIKE VAS CLIETS MODEL 3205 02:07:16,595 --> 02:07:20,065 AND MODEL IS FOR ALL PATIENTS 3206 02:07:20,132 --> 02:07:23,168 THAT WILL BE ENGAGED AND PATIENT 3207 02:07:23,235 --> 02:07:28,941 PARTNER LEADERS WHICH I WAS ONE 3208 02:07:29,008 --> 02:07:30,075 HELP THE ORGANIZATION FIND 3209 02:07:30,142 --> 02:07:31,043 PATIENTS THAT WOULD BE WILLING 3210 02:07:31,110 --> 02:07:34,346 TO SERVE TO BE ON MY ZOOM CALLS 3211 02:07:34,413 --> 02:07:38,317 AND TO BE THE RECIPIENT OF 3212 02:07:38,384 --> 02:07:43,756 SURVEYS AND FOCUS GROUPS AND DO 3213 02:07:43,822 --> 02:07:47,493 IT WILLINGLY AND AS LONG AS WE 3214 02:07:47,559 --> 02:07:55,067 CAN UNDERSTAND AND THERE WAS 3215 02:07:55,134 --> 02:07:56,769 OVER 10 PEOPLE AND LOOKED AND 3216 02:07:56,835 --> 02:07:58,303 SAID HOW CAN WE CONNECT WITH 3217 02:07:58,370 --> 02:08:00,372 PEOPLE IN THE ROOM 2 HUNDRED 3218 02:08:00,439 --> 02:08:02,541 YARDS FROM US IN A WAY THAT 3219 02:08:02,608 --> 02:08:03,642 MAKES SENSE? 3220 02:08:03,709 --> 02:08:05,744 WHAT CAME OUT WAS WAIT A MINUTE. 3221 02:08:05,811 --> 02:08:07,246 I DON'T UNDERSTAND THEIR 3222 02:08:07,312 --> 02:08:10,516 LANGUAGE AND LANGUAGE OF SCIENCE 3223 02:08:10,582 --> 02:08:12,251 IS DIFFERENT THAN LANGUAGE OF 3224 02:08:12,317 --> 02:08:14,820 [INDISCERNIBLE] AND WE TALK 3225 02:08:14,887 --> 02:08:18,290 ABOUT PAIN AND SCIENCE AND 3226 02:08:18,357 --> 02:08:20,192 SCIENTISTS TALK ABOUT PAIN IN 3227 02:08:20,259 --> 02:08:21,794 MAYBE 2 HUNDRED DIFFERENT WAYS 3228 02:08:21,860 --> 02:08:23,729 OF DESCRIBING PAIN AND SO IT 3229 02:08:23,796 --> 02:08:26,498 FORCED US TO TAKE A LOOK AT WHAT 3230 02:08:26,565 --> 02:08:28,834 IT IS THAT WE NEED TO KNOW TO BE 3231 02:08:28,901 --> 02:08:31,070 IN THE SAME ROOM AS OUR 3232 02:08:31,136 --> 02:08:32,538 RESEARCHERS AND THAT IS WHERE 3233 02:08:32,604 --> 02:08:36,241 THE PATIENTS DECIDED TO CREATE A 3234 02:08:36,308 --> 02:08:36,508 GLOSSARY. 3235 02:08:36,575 --> 02:08:38,744 WE PRESENTED FINDINGS TO THE 3236 02:08:38,811 --> 02:08:39,878 EXECUTIVE BOARD AND THEY AGREED 3237 02:08:39,945 --> 02:08:42,414 AND THEY ALLOWED US TO START IT 3238 02:08:42,481 --> 02:08:45,684 AND WE HAD YOUNG INVESTIGATORS 3239 02:08:45,751 --> 02:08:48,687 ASSIST US. 3240 02:08:48,754 --> 02:08:50,456 20-SOME-ODD YEARS LATER GLOSSARY 3241 02:08:50,522 --> 02:08:53,492 IS BEING UPDATED ON ANNUAL BASIS 3242 02:08:53,559 --> 02:08:55,627 AVAILABLE TO ANY RESEARCHER, NEW 3243 02:08:55,694 --> 02:08:57,563 OR OLD AND ANY PATIENT PARTNER 3244 02:08:57,629 --> 02:08:59,498 WHO IS INTERESTED IN 3245 02:08:59,565 --> 02:09:03,402 RHEUMATOLOGY RESEARCH TO BETTER 3246 02:09:03,469 --> 02:09:07,306 UNDERSTAND CONCEPTS AND SCIENCE. 3247 02:09:07,372 --> 02:09:09,141 THOSE THINGS THAT PATIENTS TOOK 3248 02:09:09,208 --> 02:09:13,178 A LOOK AT AND STARTED TO DO. 3249 02:09:13,245 --> 02:09:16,748 URACR CONNECTION AS PETER SAID, 3250 02:09:16,815 --> 02:09:21,520 IT IS A REALLY TIGHT 3251 02:09:21,587 --> 02:09:22,955 COLLABORATION ACROSS THE 3252 02:09:23,021 --> 02:09:24,256 ATLANTIC OCEAN AND THOSE THINGS 3253 02:09:24,323 --> 02:09:25,958 THAT WE INITIALLY STARTED OUT 3254 02:09:26,024 --> 02:09:28,193 VERY SEPARATE. I WAS FIRST 3255 02:09:28,260 --> 02:09:30,662 PATIENT TO BE ASKED TO SERVE ON 3256 02:09:30,729 --> 02:09:34,199 A GUIDELINES DEVELOPMENT 3257 02:09:34,266 --> 02:09:35,667 COMMITTEE OF ACR. 3258 02:09:35,734 --> 02:09:37,703 WE MET IN A ROOM. EVERYBODY 3259 02:09:37,769 --> 02:09:40,639 LOOKED AT ME AND KNEW I WAS A 3260 02:09:40,706 --> 02:09:41,140 PATIENT. 3261 02:09:41,206 --> 02:09:43,842 WENT UP TO OUR CHAIR AND SAID, 3262 02:09:43,909 --> 02:09:45,244 WHY IS SHE HERE? 3263 02:09:45,310 --> 02:09:47,946 SO THESE ARE SOME OF THE EARLY 3264 02:09:48,013 --> 02:09:48,814 COMMENTS THAT IS VERY 3265 02:09:48,881 --> 02:09:49,148 INTERESTING. 3266 02:09:49,214 --> 02:09:51,717 I CAN TELL YOU THAT 45 MINUTES 3267 02:09:51,783 --> 02:09:53,519 LATER DURING THE BREAK AFTER WE 3268 02:09:53,585 --> 02:09:58,157 ALL HAD A CHANCE TO SAY OUR 3269 02:09:58,223 --> 02:09:59,491 PEACE SO-TO-SPEAK AND WHY WE 3270 02:09:59,558 --> 02:10:02,995 WERE THERE AND WHAT WE HOPED TO 3271 02:10:03,061 --> 02:10:04,463 ACHIEVE, THREE INDIVIDUALS 3272 02:10:04,530 --> 02:10:06,498 RESEARCHERS CAME UP TO ME AND 3273 02:10:06,565 --> 02:10:08,333 SAID, NOW I KNOW WHY YOU ARE 3274 02:10:08,400 --> 02:10:09,968 HERE. NOW I KNOW WHY YOU ARE 3275 02:10:10,035 --> 02:10:11,937 HERE. YOU ARE HERE TO GROUND US 3276 02:10:12,004 --> 02:10:14,206 AND BRING US BACK TO REALITY OF 3277 02:10:14,273 --> 02:10:15,307 WHAT PATIENTS HAVE TO DEAL WITH 3278 02:10:15,374 --> 02:10:22,147 AND ARE DEALING WITH AND WHAT 3279 02:10:22,214 --> 02:10:24,883 FAMILIES ARE DEALING WITH AND 3280 02:10:24,950 --> 02:10:28,120 ARTICULATE IT WELL AND DOING IT 3281 02:10:28,187 --> 02:10:29,988 EFFECTIVELY IN CROWD THAT SPEAKS 3282 02:10:30,055 --> 02:10:33,058 DIFFERENT LANGUAGE THAN YOURS 3283 02:10:33,125 --> 02:10:34,693 AND SPOKESPERSON INTERNATIONAL 3284 02:10:34,760 --> 02:10:35,494 LEVEL FOR [INDISCERNIBLE] AND 3285 02:10:35,561 --> 02:10:36,929 NOT EVERYBODY SPEAKS YOUR 3286 02:10:36,995 --> 02:10:39,097 LANGUAGE AND DON'T ASSUME THAT 3287 02:10:39,164 --> 02:10:43,769 THEY DO SPEAK YOUR LANGUAGE 3288 02:10:43,835 --> 02:10:45,037 WHATEVER MEETING THEY ARE AT AND 3289 02:10:45,103 --> 02:10:47,940 NO THE THAT WE HAVE TO DOWNSIDE 3290 02:10:48,006 --> 02:10:49,808 CONVERSATIONS BUT CERTAINLY LAY 3291 02:10:49,875 --> 02:10:51,543 LANGUAGE IS AN IMPORTANT PIECE 3292 02:10:51,610 --> 02:10:55,080 AND IS BEST TWO WORDS TO 3293 02:10:55,147 --> 02:10:58,417 DESCRIBE BEING REAL AND SPEAKING 3294 02:10:58,483 --> 02:11:01,820 TO PATIENTS LIKE YOU ARE 3295 02:11:01,887 --> 02:11:02,654 SPEAKING TO NEIGHBOR. 3296 02:11:02,721 --> 02:11:04,923 THAT IS A VERY INTERESTING 3297 02:11:04,990 --> 02:11:06,525 PERSPECTIVE THAT IS IMPORTANT TO 3298 02:11:06,592 --> 02:11:09,027 KNOW THAT YOU ARE ACR AND THAT 3299 02:11:09,094 --> 02:11:16,735 OTHER NATIONAL EXPERIENCES IN 3300 02:11:16,802 --> 02:11:20,572 LUPUS AND RHEUMATOID ARTHRITIS 3301 02:11:20,639 --> 02:11:25,544 AND VAS CLIETS PEOPLE SAID AND 3302 02:11:25,611 --> 02:11:27,846 THINK THAT THESE KIND OF 3303 02:11:27,913 --> 02:11:29,815 SYSTEMIC DEVELOPMENTS CAN BE 3304 02:11:29,881 --> 02:11:32,551 HELP. TO NIAMS AND I WANT TO 3305 02:11:32,618 --> 02:11:34,152 LASTLY TALK ABOUT THE COMMERCIAL 3306 02:11:34,219 --> 02:11:37,022 SIDE YOU MIGHT SEE IF YOU PUT IN 3307 02:11:37,089 --> 02:11:39,157 WORD PATIENT ENGAGEMENT INTO 3308 02:11:39,224 --> 02:11:41,593 GOOGLE RESEARCH OR ANY RESEARCH 3309 02:11:41,660 --> 02:11:43,495 CERTAINLY NOT ADMIT BUT GENERAL 3310 02:11:43,562 --> 02:11:46,832 RESEARCH YOU WILL SEE THAT 3311 02:11:46,898 --> 02:11:52,771 PROBABLY 50% OR MORE OF CONTENT 3312 02:11:52,838 --> 02:11:55,274 IS BEING DEVELOPED BY FOR PROFIT 3313 02:11:55,340 --> 02:11:57,876 HEALTH CONSULTING AGENCIES THAT 3314 02:11:57,943 --> 02:12:03,248 SEE A NICHE, IF YOU WILL. 3315 02:12:03,315 --> 02:12:04,883 THEY SEE AN OPPORTUNITY BECAUSE 3316 02:12:04,950 --> 02:12:10,055 OF VARIETY OF TOPICS THAT WERE 3317 02:12:10,122 --> 02:12:11,923 MENTIONED PEOPLE AND PATIENTS 3318 02:12:11,990 --> 02:12:13,358 DON'T UNDERSTAND WHAT IT MEANS 3319 02:12:13,425 --> 02:12:14,259 AND PEOPLE DON'T UNDERSTAND HOW 3320 02:12:14,326 --> 02:12:17,396 TO EMPLOY IT AND THERE IS AN 3321 02:12:17,462 --> 02:12:19,164 OPPORTUNITY TO DEVELOP SYSTEMS 3322 02:12:19,231 --> 02:12:21,166 AND ONE IN PARTICULAR I WILL 3323 02:12:21,233 --> 02:12:25,904 CITE IT IS A CONSULTING FIRM 3324 02:12:25,971 --> 02:12:27,205 THAT APPROACHED C HOUSE WITH 3325 02:12:27,272 --> 02:12:29,207 INTENT TO DEVELOP FIRST OF ALL A 3326 02:12:29,274 --> 02:12:30,509 TASK FORCE AND THEY WANTED TO 3327 02:12:30,575 --> 02:12:32,811 GET A HANDLE AND THEY ARE 3328 02:12:32,878 --> 02:12:34,212 INTERNATIONAL AND WANTED TO GET 3329 02:12:34,279 --> 02:12:36,114 A HANDLE WHAT WAS HAPPENING IN 3330 02:12:36,181 --> 02:12:38,150 UNITED STATES AND IN EUROPE AND 3331 02:12:38,216 --> 02:12:39,785 WHAT COULD BE DONE AND WHERE ARE 3332 02:12:39,851 --> 02:12:40,752 GAPS? 3333 02:12:40,819 --> 02:12:44,089 ALSO, WE HAD SUGGESTED AND 3334 02:12:44,156 --> 02:12:46,258 PATIENTS SUGGESTED WHY DON'T YOU 3335 02:12:46,325 --> 02:12:48,860 KEERY YOUR OWN INDUSTRY AND WHAT 3336 02:12:48,927 --> 02:12:50,896 TARGETS ARE YOU INTERESTED IN? 3337 02:12:50,962 --> 02:12:53,699 INTERESTED MORE IN MEDICAL 3338 02:12:53,765 --> 02:12:56,468 TECHNOLOGY AND MEDICAL DEVICE 3339 02:12:56,535 --> 02:12:58,103 FIELD AND ASKED THEM PUTTING 3340 02:12:58,170 --> 02:12:59,938 TOGETHER A SURVEY HELPING THEM 3341 02:13:00,005 --> 02:13:03,408 DEVELOP THAT AND SURVEY WENT OUT 3342 02:13:03,475 --> 02:13:06,211 AND 9 HUNDRED PEOPLE RESPONDED 3343 02:13:06,278 --> 02:13:08,647 THAT IS SIGNIFICANT ACROSS A 3344 02:13:08,714 --> 02:13:11,450 VARIETY OF DIFFERENT COMPETING 3345 02:13:11,516 --> 02:13:12,617 COMPANIES ABOUT PATIENT 3346 02:13:12,684 --> 02:13:17,322 ENGAGEMENT THAT PRODUCED FOR THE 3347 02:13:17,389 --> 02:13:18,757 TASKFORCE A REAL SHOCK THAT 3348 02:13:18,824 --> 02:13:22,194 NEARLY 80% OF THE PEOPLE THAT 3349 02:13:22,260 --> 02:13:24,896 RESPONDED HAD NO CLUE ABOUT THE 3350 02:13:24,963 --> 02:13:27,432 DEFINITION AND WHAT IT MEANT OR 3351 02:13:27,499 --> 02:13:29,468 HOW TO EMPLOY IT. 3352 02:13:29,534 --> 02:13:31,169 THEY THOUGHT PATIENT ENGAGEMENT 3353 02:13:31,236 --> 02:13:32,838 WAS THEM AND EACH PERSON DOING 3354 02:13:32,904 --> 02:13:36,842 THEIR WORK AS INSTRUCTED OR AS 3355 02:13:36,908 --> 02:13:38,610 GUIDED BY THEIR BOSS. 3356 02:13:38,677 --> 02:13:39,878 IT WAS INTERESTING THAT THEN 3357 02:13:39,945 --> 02:13:41,913 WHAT WAS PRODUCED OR VARIETY OF 3358 02:13:41,980 --> 02:13:43,415 DIFFERENT DOCUMENTS THAT ARE 3359 02:13:43,482 --> 02:13:46,852 USED INTERNALLY AND HAVE A 3360 02:13:46,918 --> 02:13:48,186 RESULT OF THAT WILL TELL YOU 3361 02:13:48,253 --> 02:13:50,889 THEIR GOAL AND WOULD LIKE TO 3362 02:13:50,956 --> 02:13:53,692 DEVELOP A CERTIFICATION PROGRAM 3363 02:13:53,759 --> 02:13:57,229 AND EDUCATION PROGRAM FOR MED 3364 02:13:57,295 --> 02:13:58,997 TECH STAFF FIRST WITHIN THEIR 3365 02:13:59,064 --> 02:14:00,999 COMPANY AND THEN TO GO BROADLY 3366 02:14:01,066 --> 02:14:03,135 WITHIN THE MED TECH INDUSTRY AND 3367 02:14:03,201 --> 02:14:06,705 CERTIFICATION PROGRAM ON PATIENT 3368 02:14:06,772 --> 02:14:07,205 ENGAGEMENT. 3369 02:14:07,272 --> 02:14:10,809 AND SO THOSE WHO WERE PATIENTS 3370 02:14:10,876 --> 02:14:14,346 IN THE ROOM, ME IN PARTICULAR 3371 02:14:14,413 --> 02:14:17,482 SAID THIS IS A SIMILAR SITUATION 3372 02:14:17,549 --> 02:14:19,184 WITH PATIENTS. 3373 02:14:19,251 --> 02:14:21,453 PATIENTS WANTED TO BE PART OF 3374 02:14:21,520 --> 02:14:25,190 THE LOCAL RESEARCH GROUP AND 3375 02:14:25,257 --> 02:14:26,892 OTHER PATIENTS WANT AND CAN AND 3376 02:14:26,958 --> 02:14:28,393 WISH TO PARTICIPATE AT NATIONAL 3377 02:14:28,460 --> 02:14:29,961 OR INTERNATIONAL LEVEL AND HOW 3378 02:14:30,028 --> 02:14:33,198 DO WE ENSURE THAT THEY HAVE AT 3379 02:14:33,265 --> 02:14:35,100 LEAST KNOWLEDGE THAT CAN BE 3380 02:14:35,167 --> 02:14:36,535 GARNERED AND LEXICON THAT WILL 3381 02:14:36,601 --> 02:14:37,836 BE USED? 3382 02:14:37,903 --> 02:14:41,807 SO THE IDEA OF A CERTIFICATION 3383 02:14:41,873 --> 02:14:45,110 PROGRAM FOR STAFF OR MEASURING 3384 02:14:45,177 --> 02:14:47,512 PEOPLE IN THE FIELD POSSIBLY FOR 3385 02:14:47,579 --> 02:14:48,747 PATIENTS IS SOMETHING TO HOPE 3386 02:14:48,814 --> 02:14:53,552 FOR AND NEXT SLIDE, PLEASE. 3387 02:14:53,618 --> 02:14:55,921 I WANT TO CONCLUDE WHERE THE 3388 02:14:55,987 --> 02:14:56,755 OPPORTUNITIES ARE. 3389 02:14:56,822 --> 02:14:58,957 AGAIN, LOTS OF THINGS I TALKED 3390 02:14:59,024 --> 02:15:00,659 ABOUT HAVE NOT BEEN WRITTEN UP 3391 02:15:00,725 --> 02:15:02,461 YET AND PROBABLY WON'T. 3392 02:15:02,527 --> 02:15:06,765 WE ARE SEEING THAT THE CONCEPT 3393 02:15:06,832 --> 02:15:08,300 OF IMPLEMENTATION OF PATIENT 3394 02:15:08,366 --> 02:15:09,668 ENGAGEMENT IS UNIQUELY DIFFERENT 3395 02:15:09,734 --> 02:15:12,838 TO EACH ENTITY AND TO POSSIBLY 3396 02:15:12,904 --> 02:15:15,707 EACH THERAPEUTIC AREA AND TO THE 3397 02:15:15,774 --> 02:15:17,943 SCOPE OF WHERE YOU ARE GOING TO 3398 02:15:18,009 --> 02:15:23,181 DO YOUR WORK GEOGRAPHICAL SCOPE 3399 02:15:23,248 --> 02:15:25,383 OR TOPICAL SCOPE. 3400 02:15:25,450 --> 02:15:27,118 OPPORTUNITIES FOR NIAMS IS 3401 02:15:27,185 --> 02:15:28,587 LEARNING SITUATION FROM ALL 3402 02:15:28,653 --> 02:15:32,991 GUIDANCE THAT IS BEING PROVIDED 3403 02:15:33,058 --> 02:15:36,394 THAT IN WRITTEN FORM IS PIECE 3404 02:15:36,461 --> 02:15:38,864 MEAL BY PIECE MEAL THAT PETER 3405 02:15:38,930 --> 02:15:41,933 DEMONSTRATED TO US AND INTENT 3406 02:15:42,000 --> 02:15:44,903 AND GLOBAL PIECE THAT SUE HAS 3407 02:15:44,970 --> 02:15:46,471 DESCRIBED SO BEAUTIFULLY. 3408 02:15:46,538 --> 02:15:50,175 THIS IS A VISION FOR YOU I WOULD 3409 02:15:50,242 --> 02:15:53,512 LIKE YOU TO THINK ABOUT. 3410 02:15:53,578 --> 02:15:56,214 TODAY I FEEL LIKE A PATIENT 3411 02:15:56,281 --> 02:15:58,016 RESEARCH PARTNER AND ENGAGED 3412 02:15:58,083 --> 02:16:00,952 PATIENT RESEARCH PARTNER WHEN I 3413 02:16:01,019 --> 02:16:01,887 RECEIVE INFORMATION LIKE ANYONE 3414 02:16:01,953 --> 02:16:03,855 ELSE ON DEVELOPMENT TEAM IF I AM 3415 02:16:03,922 --> 02:16:07,325 ON THE DEVELOPMENT TEAM AND HAVE 3416 02:16:07,392 --> 02:16:09,394 THE OPPORTUNITY TO TALK WITHIN 3417 02:16:09,461 --> 02:16:12,297 THE GROUP NOT SEPARATELY AND NOT 3418 02:16:12,364 --> 02:16:14,566 LIKE A FOCUS GROUP. 3419 02:16:14,633 --> 02:16:16,935 BUT TO TALK AND THEN INTERACT. 3420 02:16:17,002 --> 02:16:20,972 IF I NEED EDUCATION, THERE IS 3421 02:16:21,039 --> 02:16:23,808 ONE OR TWO MDPHDS THAT WILL SIT 3422 02:16:23,875 --> 02:16:28,246 DOWN WITH ME AND TALK ABOUT CHI 3423 02:16:28,313 --> 02:16:29,981 SQUARES AND DIFFERENT KINDS OF 3424 02:16:30,048 --> 02:16:32,183 CONCEPTS THAT WILL BE DISCUSSED 3425 02:16:32,250 --> 02:16:34,452 IN ADVANCE SO I KNOW AND CAN 3426 02:16:34,519 --> 02:16:36,388 CONTRIBUTE ACCORDINGLY. 3427 02:16:36,454 --> 02:16:37,722 THIS DOESN'T HAPPEN THAT OFTEN. 3428 02:16:37,789 --> 02:16:40,258 WHEN IT DOES, IT VALUES THAT 3429 02:16:40,325 --> 02:16:45,397 NEXT CONVERSATION AND THAT MIXED 3430 02:16:45,463 --> 02:16:46,631 INTERACTION IMMENSELY AND 3431 02:16:46,698 --> 02:16:50,969 ABSOLUTELY IMMENSELY EVERY STAGE 3432 02:16:51,036 --> 02:16:53,138 SUE AND PETER HAVE DISCUSSED 3433 02:16:53,204 --> 02:16:55,907 PATIENTS AND RESEARCH PARTNERS 3434 02:16:55,974 --> 02:16:57,509 ARE INVOLVED AND BY LOOKING AT 3435 02:16:57,576 --> 02:16:59,778 IT AND REVIEWING IT AND INVOLVED 3436 02:16:59,844 --> 02:17:02,647 WHY EDITING AND SAYING WHY THIS 3437 02:17:02,714 --> 02:17:04,282 DOESN'T MAKE SENSE AND PUTTING 3438 02:17:04,349 --> 02:17:06,985 IN EASIER LANGUAGE FOR PEOPLE TO 3439 02:17:07,052 --> 02:17:07,285 UNDERSTAND. 3440 02:17:07,352 --> 02:17:09,120 OKAY. HOW ABOUT WRITING A LAY 3441 02:17:09,187 --> 02:17:11,723 ARTICLE OR LAYMAN'S OR LAY 3442 02:17:11,790 --> 02:17:13,692 PERSON'S ARTICLE AS A RESULT OF 3443 02:17:13,758 --> 02:17:16,962 THE RESEARCH? AND HAVE THAT GO 3444 02:17:17,028 --> 02:17:19,831 OUT TO A WIDER DISTRIBUTION 3445 02:17:19,898 --> 02:17:20,832 AUDIENCE? 3446 02:17:20,899 --> 02:17:25,170 THAT IS WHERE TO ME IN MY VISION 3447 02:17:25,236 --> 02:17:27,305 TRUE PATIENT ENGAGEMENT REALLY 3448 02:17:27,372 --> 02:17:31,142 WORKS AND THERE HAS TO BE 3449 02:17:31,209 --> 02:17:31,810 TRAINING AND EDUCATION. 3450 02:17:31,876 --> 02:17:34,346 THERE HAS TO BE A PROCESS THAT 3451 02:17:34,412 --> 02:17:37,816 CAN'T -- HAS TO BE FLUID IN MANY 3452 02:17:37,882 --> 02:17:38,350 WAYS. 3453 02:17:38,416 --> 02:17:40,986 WE HAVE TO LIKE NIAMS DOES WITH 3454 02:17:41,052 --> 02:17:42,787 ITS YOUNG INVESTIGATORS. 3455 02:17:42,854 --> 02:17:44,889 WE HAVE TO HAVE A SYSTEM OF 3456 02:17:44,956 --> 02:17:46,825 HELPING PATIENTS TO BECOME 3457 02:17:46,891 --> 02:17:48,627 BETTER AT TALKING ABOUT THEIR 3458 02:17:48,693 --> 02:17:51,763 EXPERIENCE IN A SCIENTIFIC 3459 02:17:51,830 --> 02:17:52,097 ENVIRONMENT. 3460 02:17:52,163 --> 02:17:53,732 SO THAT IS THE VISION I WOULD 3461 02:17:53,798 --> 02:17:57,869 LIKE TO SEE YOU COME UP WITH. 3462 02:17:57,936 --> 02:17:59,004 NEXT SLIDE, PLEASE. 3463 02:17:59,070 --> 02:18:01,272 I'M STANDING NEXT TO MY MOTHER. 3464 02:18:01,339 --> 02:18:03,208 NO. SHE IS NOT MY SISTER. I 3465 02:18:03,274 --> 02:18:06,411 HAD THREE PEOPLE ASK ME IN 3466 02:18:06,478 --> 02:18:07,812 WASHINGTON, DC IS THIS YOUR 3467 02:18:07,879 --> 02:18:09,381 SISTER? THIS IS MY MOTHER WHO 3468 02:18:09,447 --> 02:18:12,217 SINCE PASSED AWAY. SHE SHARED 3469 02:18:12,283 --> 02:18:13,718 EVERYTHING WITH ME AND TOOK CARE 3470 02:18:13,785 --> 02:18:16,888 OF ME WHEN I COULDN'T WALK OR 3471 02:18:16,955 --> 02:18:17,789 EAT. 3472 02:18:17,856 --> 02:18:19,858 SHE WENT WITH MY ESCORT AND 3473 02:18:19,924 --> 02:18:22,027 HELPER AND WORKER AT 3474 02:18:22,093 --> 02:18:23,194 INTERNATIONAL LEVEL WHEREVER I 3475 02:18:23,261 --> 02:18:24,229 WAS TRAVELING. 3476 02:18:24,295 --> 02:18:28,900 AND SHE CAME TO WASHINGTON, DC 3477 02:18:28,967 --> 02:18:30,835 AND ADVOCATED AS A CAREGIVER. 3478 02:18:30,902 --> 02:18:33,838 WE CAN'T FORGET CAREGIVERS OR 3479 02:18:33,905 --> 02:18:35,507 FORGET THIS IS A DISEASE OR SET 3480 02:18:35,573 --> 02:18:37,275 OF DISEASES THAT WE WILL LIVE 3481 02:18:37,342 --> 02:18:39,744 WITH FOR THE REST OF OUR LIVES 3482 02:18:39,811 --> 02:18:44,482 UNTIL YOU CAN COME UP WITH A 3483 02:18:44,549 --> 02:18:44,883 CURE. 3484 02:18:44,949 --> 02:18:47,218 THANKS SO VERY MUCH. NEXT 3485 02:18:47,285 --> 02:18:48,820 SLIDE, PLEASE. 3486 02:18:48,887 --> 02:18:50,155 THANK YOU, AMY. 3487 02:18:50,221 --> 02:18:52,190 >> YOU JUST LAID OUT THE 3488 02:18:52,257 --> 02:18:54,659 JOURNEY. IT HAS BEEN A LONG ONE 3489 02:18:54,726 --> 02:18:57,028 BUT AMAZING WHERE WE HAVE GOTTEN 3490 02:18:57,095 --> 02:18:57,429 TO. 3491 02:18:57,495 --> 02:19:02,901 IF ANYONE HAS ANY GENERAL 3492 02:19:02,967 --> 02:19:06,304 QUESTIONS FOR ANY SUE, PETER OR 3493 02:19:06,371 --> 02:19:06,504 AMY. 3494 02:19:06,571 --> 02:19:09,007 LET ME PUT SOMETHING ON THE 3495 02:19:09,074 --> 02:19:09,307 FLOOR. 3496 02:19:09,374 --> 02:19:11,176 THAT IS THAT WE SHOULD THINK 3497 02:19:11,242 --> 02:19:15,814 ABOUT NIAMS WITH THE ADVICE FROM 3498 02:19:15,880 --> 02:19:19,217 COUNCIL HOW TO MAKE SURE WE 3499 02:19:19,284 --> 02:19:22,353 INCLUDE ENCOURAGEMENT FOR 3500 02:19:22,420 --> 02:19:23,521 PATIENT ENGAGEMENT WHEREVER 3501 02:19:23,588 --> 02:19:25,190 APPROPRIATE IN A CLINICAL STUDY. 3502 02:19:25,256 --> 02:19:28,193 SO THAT IS WHAT WE WILL TALK 3503 02:19:28,259 --> 02:19:28,660 ABOUT HERE. 3504 02:19:28,727 --> 02:19:30,328 THIS IS A LITTLE BIT GETTING 3505 02:19:30,395 --> 02:19:33,164 AHEAD OF OURSELVES AND THIS 3506 02:19:33,231 --> 02:19:35,200 CIRCLES BACK A BIT TO THE 3507 02:19:35,266 --> 02:19:37,736 PRESENTATION AND CLINICAL TRIALS 3508 02:19:37,802 --> 02:19:39,738 GROUP AND A LITTLE FORESHADOWING 3509 02:19:39,804 --> 02:19:40,939 THERE. 3510 02:19:41,005 --> 02:19:44,676 IF ANYONE WOULD LIKE TO COMMENT 3511 02:19:44,743 --> 02:19:48,012 ON THE QUESTION OF SHOULD WE 3512 02:19:48,079 --> 02:19:51,549 WRITE INTO FUNDING OPPORTUNITY 3513 02:19:51,616 --> 02:19:52,350 ANNOUNCEMENTS AND WRITE INTO 3514 02:19:52,417 --> 02:19:55,186 NOTICE OF REWARD THAT WE EXPECT 3515 02:19:55,253 --> 02:19:59,190 PATIENT ENGAGEMENT SOUP TO NUTS 3516 02:19:59,257 --> 02:20:06,498 UNLESS OTHERWISE INAPPROPRIATE. 3517 02:20:06,564 --> 02:20:09,400 >> LET'S SEE WHAT -- 3518 02:20:09,467 --> 02:20:11,302 [INDISCERNIBLE] PATIENT ADVOCATE 3519 02:20:11,369 --> 02:20:14,873 AND DON'T WORRY. WILL YOU COME 3520 02:20:14,939 --> 02:20:15,206 DOWN. 3521 02:20:15,273 --> 02:20:16,775 ALSO FROM PEOPLE AND NIAM HAS 3522 02:20:16,841 --> 02:20:18,643 BEEN IN THE ROLE AND PEOPLE ALSO 3523 02:20:18,710 --> 02:20:20,845 WHO HAVE BEEN ENGAGED IN 3524 02:20:20,912 --> 02:20:22,547 RESEARCH AND WE ONLY HAVE 10 3525 02:20:22,614 --> 02:20:25,950 MINUTES AND THINK A FEW COMMENTS 3526 02:20:26,017 --> 02:20:27,585 WOULD HELP STUDENTS UNDERSTAND 3527 02:20:27,652 --> 02:20:29,053 WHERE TO GO WITH THIS. 3528 02:20:29,120 --> 02:20:31,523 >> FIRST OF ALL, THANKS FOR 3529 02:20:31,589 --> 02:20:33,258 PUTTING THIS ON THE TANL. IT IS 3530 02:20:33,324 --> 02:20:35,660 AN IMPORTANT TOPIC AND REALLY 3531 02:20:35,727 --> 02:20:36,661 GRATEFUL YOU HAVE BROUGHT THIS 3532 02:20:36,728 --> 02:20:37,262 FOR DISCUSSION. 3533 02:20:37,328 --> 02:20:40,031 I THINK IT WILL BE CRITICAL TO 3534 02:20:40,098 --> 02:20:41,466 INCORPORATE THIS AS A 3535 02:20:41,533 --> 02:20:43,868 REQUIREMENT WITHIN THE GRANT 3536 02:20:43,935 --> 02:20:44,836 APPLICATIONS FOR CLINICAL 3537 02:20:44,903 --> 02:20:48,473 STUDIES THAT IS ONLY WAY IT IS 3538 02:20:48,540 --> 02:20:50,975 GOING TO BE DONE PROACTIVELY AS 3539 02:20:51,042 --> 02:20:52,977 ALL SPEAKERS HAVE MENTIONED 3540 02:20:53,044 --> 02:20:55,914 ENGAGING PATIENTS NEEDS TO BE 3541 02:20:55,980 --> 02:20:56,981 INCORPORATED THROUGHOUT PROCESS 3542 02:20:57,048 --> 02:20:58,650 AND NOT AS AN AFTERTHOUGHT AND 3543 02:20:58,716 --> 02:21:00,118 THINK IF NOT INCLUDED AS PART OF 3544 02:21:00,185 --> 02:21:02,754 THE APPLICATION IT IS REALLY 3545 02:21:02,821 --> 02:21:04,823 MUCH LESS LIKELY TO BE FRONT AND 3546 02:21:04,889 --> 02:21:07,192 CENTER IN ALL EFFORTS AND THERE 3547 02:21:07,258 --> 02:21:08,960 IS ACTIVITIES THAT ARE HAPPENING 3548 02:21:09,027 --> 02:21:10,829 AND DON'T THINK INVESTIGATORS 3549 02:21:10,895 --> 02:21:13,198 NEED TO REINVENT THE WHEEL AND 3550 02:21:13,264 --> 02:21:15,133 CAN TAP INTO RESOURCES THAT 3551 02:21:15,200 --> 02:21:17,535 EXIST FROM PATIENT ADVOCACY 3552 02:21:17,602 --> 02:21:19,437 ORGANIZATIONS AND INVESTIGATORS 3553 02:21:19,504 --> 02:21:21,873 LEADING EFFORTS AND LOTS OF 3554 02:21:21,940 --> 02:21:23,374 PUBLICATIONS AND ARE LOTS OF 3555 02:21:23,441 --> 02:21:25,510 RESOURCES OUT THERE THAT COULD 3556 02:21:25,577 --> 02:21:29,013 BE UTILIZED RATHER THAN 3557 02:21:29,080 --> 02:21:32,016 SOMETHING INVENTED FROM SCRATCH. 3558 02:21:32,083 --> 02:21:33,685 >> I'M CERTAINLY -- THANK YOU 3559 02:21:33,751 --> 02:21:36,454 FOR THE PRESENTATION AND AS I 3560 02:21:36,521 --> 02:21:40,558 THOUGHT ABOUT IT, I CONCUR WITH 3561 02:21:40,625 --> 02:21:41,526 RECOMMENDATION THAT WOULD HAVE 3562 02:21:41,593 --> 02:21:44,329 TO BE REQUIRED TO REALLY -- AS 3563 02:21:44,395 --> 02:21:46,798 PECK ORRI DOES THAT I'M MOST 3564 02:21:46,865 --> 02:21:48,700 FAMILIAR WITH SOME OF THE OTHER 3565 02:21:48,766 --> 02:21:50,468 PROGRAMS FUNDED UNDER THERE. 3566 02:21:50,535 --> 02:21:54,572 THERE IS A GREAT TRAINING NEED 3567 02:21:54,639 --> 02:21:57,375 FOR THINGS NIAMS COULD TAKE THE 3568 02:21:57,442 --> 02:21:59,177 LEAD IN GETTING OUT INTO THE 3569 02:21:59,244 --> 02:22:02,013 COMMUNITY AND WHAT IT MEANS. 3570 02:22:02,080 --> 02:22:04,749 ONE OF THOSE SUGGESTIONS I WOULD 3571 02:22:04,816 --> 02:22:07,218 HAVE, HAVING HEARD THESE 3572 02:22:07,285 --> 02:22:08,486 EXCELLENT PRESENTATIONS IS IN 3573 02:22:08,553 --> 02:22:10,521 SOME WAYS THEY ARE AT A HIGH 3574 02:22:10,588 --> 02:22:11,890 LEVEL IN GENERAL. 3575 02:22:11,956 --> 02:22:13,958 IT WOULD BE HELPFUL TO HEAR 3576 02:22:14,025 --> 02:22:17,328 EXAMPLES OF WAYS THAT DON'T WORK 3577 02:22:17,395 --> 02:22:19,497 FOR PATIENT ENGAGEMENT OR 3578 02:22:19,564 --> 02:22:21,666 PRETEND TO BE PATIENT ENGAGEMENT 3579 02:22:21,733 --> 02:22:23,768 AND HAVE DISASTROUS RESULTS IN 3580 02:22:23,835 --> 02:22:26,704 TERMS OF CLINICAL TRIAL RESULTS. 3581 02:22:26,771 --> 02:22:28,806 THIS SLIDE THAT STANDS OUT IN MY 3582 02:22:28,873 --> 02:22:33,211 MIND THAT IS A RETURN ON 3583 02:22:33,278 --> 02:22:35,079 ENGAGEMENT THAT SUE PRESENTED. 3584 02:22:35,146 --> 02:22:36,648 I WOULD HAVE LIKED OR WOULD 3585 02:22:36,714 --> 02:22:38,850 STILL LIKE TO HEAR MORE CONCRETE 3586 02:22:38,917 --> 02:22:40,118 SPECIFIC EXAMPLES AND THINK WHEN 3587 02:22:40,184 --> 02:22:42,487 YOU ARE DOING TRAINING IT WOULD 3588 02:22:42,553 --> 02:22:46,291 BE VERY HELPFUL TO SAY WHY IT 3589 02:22:46,357 --> 02:22:49,260 MAKES SUCH A DIFFERENCE WITH 3590 02:22:49,327 --> 02:22:51,062 HANDS ON THE GROUND EXPERIENCE 3591 02:22:51,129 --> 02:22:52,430 WHAT WORKS AND WHAT DOESN'T AND 3592 02:22:52,497 --> 02:22:55,033 EITHER CLINICAL TRIALS END UP 3593 02:22:55,099 --> 02:22:57,335 NOT -- I WON'T GO INTO SPECIFICS 3594 02:22:57,402 --> 02:23:01,539 BUT THINK THAT THEY WOULD BE 3595 02:23:01,606 --> 02:23:02,874 VERY HELPFUL. 3596 02:23:02,941 --> 02:23:04,776 >> YEAH. THANK YOU. FIRST OF 3597 02:23:04,842 --> 02:23:07,412 ALL I WANT TO THANK OUR THREE 3598 02:23:07,478 --> 02:23:09,213 PRESENTERS FOR THESE FABULOUS 3599 02:23:09,280 --> 02:23:10,949 PRESENTATIONS AND MANY OTHER 3600 02:23:11,015 --> 02:23:12,884 WAYS WHICH THEY FELT THAT THE 3601 02:23:12,951 --> 02:23:15,086 INSTITUTE MOST RECENTLY PETER 3602 02:23:15,153 --> 02:23:16,854 AND CLINICAL TRIALS WORKING 3603 02:23:16,921 --> 02:23:18,756 GROUP HEAR ABOUT THAT AND SUE 3604 02:23:18,823 --> 02:23:20,792 RECENTLY COMPLETED TIME AS A 3605 02:23:20,858 --> 02:23:22,126 COUNCIL MEMBER AND AMY, YOU 3606 02:23:22,193 --> 02:23:26,230 HELPED US RECENTLY WITH A 3607 02:23:26,297 --> 02:23:27,899 REGENERATIVE MEDICINE ROUNDTABLE 3608 02:23:27,966 --> 02:23:29,367 REPRESENTING PATIENT PERSPECTIVE 3609 02:23:29,434 --> 02:23:30,902 THAT IS SO VALUABLE. 3610 02:23:30,969 --> 02:23:31,869 THANK YOU ALL. 3611 02:23:31,936 --> 02:23:33,738 AMY I DON'T KNOW IF YOU REMEMBER 3612 02:23:33,805 --> 02:23:36,274 WE MET A MILLION YEARS AGO WITH 3613 02:23:36,341 --> 02:23:39,177 KICKOFF OF BIG RHEUMATOID 3614 02:23:39,243 --> 02:23:40,511 ARTHRITIS GENETICS CONSORTIUM 3615 02:23:40,578 --> 02:23:41,679 AND REMEMBER YOU FOR SO LONG AND 3616 02:23:41,746 --> 02:23:45,817 ON THIS TOPIC, I AGREE WITH FOR, 3617 02:23:45,883 --> 02:23:48,953 YOU KNOW, WE SHOULD BE PROACTIVE 3618 02:23:49,020 --> 02:23:51,422 IN THIS SPACE AND ARTICULATE 3619 02:23:51,489 --> 02:23:52,390 EXPECTATIONS THAT IS CRITICALLY 3620 02:23:52,457 --> 02:23:54,192 IMPORTANT THAT WE MAKE IT AS 3621 02:23:54,258 --> 02:23:56,961 EASY AS POSSIBLE FOR 3622 02:23:57,028 --> 02:23:58,496 INVESTIGATORS TO DO THIS. 3623 02:23:58,563 --> 02:24:01,299 THERE ARE PAPERS AND RESOURCES 3624 02:24:01,366 --> 02:24:03,534 AND WHAT CAN WE DO TO REALLY 3625 02:24:03,601 --> 02:24:06,504 BRING THIS LITERATURE AND 3626 02:24:06,571 --> 02:24:08,172 KNOWLEDGE AND THESE APPROACHES 3627 02:24:08,239 --> 02:24:09,540 TO THE RESEARCHERS. 3628 02:24:09,607 --> 02:24:11,876 IN FACT, ONE REASON WHY I WAS 3629 02:24:11,943 --> 02:24:13,144 EAGER TO HAVE THESE 3630 02:24:13,211 --> 02:24:15,179 CONVERSATIONS IS THAT YOU KNOW 3631 02:24:15,246 --> 02:24:16,848 I'M HEARING FROM INVESTIGATORS 3632 02:24:16,914 --> 02:24:19,183 WE WANT TO DO THIS BUT HOW? I'M 3633 02:24:19,250 --> 02:24:21,786 NO THE SURE HOW AND WE WILL DO 3634 02:24:21,853 --> 02:24:23,488 WHAT YOU ARE PROPOSING THAT IS 3635 02:24:23,554 --> 02:24:25,390 TO IDENTIFY YOU KNOW BEST 3636 02:24:25,456 --> 02:24:28,226 PRACTICES RESOURCES AND COMPILE 3637 02:24:28,292 --> 02:24:30,428 THEM OR SOMEHOW DISTILL THEM AND 3638 02:24:30,495 --> 02:24:31,529 PRESENT THEM TO OUR COMMUNITY 3639 02:24:31,596 --> 02:24:33,698 AND TO OUR INVESTIGATORS TO 3640 02:24:33,765 --> 02:24:35,733 ACTUALLY DO THIS. 3641 02:24:35,800 --> 02:24:37,869 I AGREE ALSO NOT ONLY DOES IT 3642 02:24:37,935 --> 02:24:39,437 FEEL LIKE ETHICAL AND MORAL 3643 02:24:39,504 --> 02:24:40,638 THING TO DO AND FOR THAT REASON 3644 02:24:40,705 --> 02:24:43,174 WE SHOULD DO IT AND ALSO THE 3645 02:24:43,241 --> 02:24:46,344 HARD DATA THAT RE-ENFORCES VALUE 3646 02:24:46,411 --> 02:24:49,347 IN ALL DIFFERENT WAYS YOU KNOW 3647 02:24:49,414 --> 02:24:50,515 COST EFFECTIVENESS IN THE LONG 3648 02:24:50,581 --> 02:24:54,385 RUN AND FAILED TRIALS AND YOU 3649 02:24:54,452 --> 02:24:55,520 KNOW ET CETERA. 3650 02:24:55,586 --> 02:24:57,221 SO I -- THAT LITERATURE SEEMS 3651 02:24:57,288 --> 02:24:59,357 LIKE A BIT OF A BLUR TO ME AND 3652 02:24:59,424 --> 02:25:01,659 I'M NOT I DON'T HAVE A GOOD 3653 02:25:01,726 --> 02:25:04,729 HANDLE ON IT AND WONDER WHETHER 3654 02:25:04,796 --> 02:25:06,798 WE NEED AN ONGOING EFFORT OR 3655 02:25:06,864 --> 02:25:08,566 SOMETHING ELSE WITHIN THE 3656 02:25:08,633 --> 02:25:09,534 INSTITUTE OR IN COLLABORATION 3657 02:25:09,600 --> 02:25:12,470 WITH COUNCIL SO THAT YOU KNOW AS 3658 02:25:12,537 --> 02:25:14,338 WE START EXPECTING THIS AND 3659 02:25:14,405 --> 02:25:16,374 REQUIRING IT OUR INVESTIGATORS 3660 02:25:16,441 --> 02:25:20,111 CAN BE PREPARED AS POSSIBLE TO 3661 02:25:20,178 --> 02:25:20,411 IMPLEMENT. 3662 02:25:20,478 --> 02:25:22,880 GREAT. WE SEE A COUPLE HANDS UP 3663 02:25:22,947 --> 02:25:23,748 HERE. 3664 02:25:23,815 --> 02:25:26,684 PETER AMERICALE AND CARL YEAH 3665 02:25:26,751 --> 02:25:26,918 PETER. 3666 02:25:26,984 --> 02:25:27,652 >> THANKS. 3667 02:25:27,718 --> 02:25:30,321 >> I'M -- I AGREE THAT THIS 3668 02:25:30,388 --> 02:25:34,258 SHOULD BECOME MORE PART OF THE 3669 02:25:34,325 --> 02:25:34,459 NORM. 3670 02:25:34,525 --> 02:25:36,294 I ALSO AGREE THAT ANNE MADE 3671 02:25:36,360 --> 02:25:38,129 INTERESTING POINTS SAYING WHAT 3672 02:25:38,196 --> 02:25:39,163 DOESN'T WORK AND SOMETHING FOR 3673 02:25:39,230 --> 02:25:45,002 WORK AND FIRST OF ALL NOT SURE 3674 02:25:45,069 --> 02:25:46,637 THIS FOR EVERYTHING AND EVERY 3675 02:25:46,704 --> 02:25:48,406 PROJECT AND DOING IN ANALYSIS 3676 02:25:48,473 --> 02:25:51,008 AND LOOKING AT NEW METHOD MAY 3677 02:25:51,075 --> 02:25:54,779 NOT BE NECESSARY TO HAVE 3678 02:25:54,846 --> 02:25:56,080 INNOVATION ENGAGEMENT AND MAY BE 3679 02:25:56,147 --> 02:25:59,150 AND DEPENDING ON IT AND TRIALS 3680 02:25:59,217 --> 02:26:00,952 DEFAULT IS YES AND PENALTY PHASE 3681 02:26:01,018 --> 02:26:02,820 AND YOU NEED TO THINK ABOUT IT 3682 02:26:02,887 --> 02:26:04,322 AND OTHER THING IS YOU SHOULD DO 3683 02:26:04,388 --> 02:26:06,057 IT BECAUSE IT WILL HAVE VALUE, 3684 02:26:06,124 --> 02:26:07,625 WHICH I THINK IT DOES. 3685 02:26:07,692 --> 02:26:09,494 YOU ALSO HAVE TO REALIZE THAT 3686 02:26:09,560 --> 02:26:20,104 LOTS OF THE PATIENTS COULD BE. 3687 02:26:27,912 --> 02:26:29,280 THESE ARE TECHNICAL TERMS AND 3688 02:26:29,347 --> 02:26:31,048 THINK THAT THE SAME THING CAN 3689 02:26:31,115 --> 02:26:32,717 HAPPEN AND I THINK THAT IS WHY 3690 02:26:32,783 --> 02:26:34,886 WE WANT TO -- YOU WANT TO PICK 3691 02:26:34,952 --> 02:26:37,221 YOUR RESEARCH COLLABORATORS VERY 3692 02:26:37,288 --> 02:26:38,422 CAREFULLY FOR THE SAME REASONS 3693 02:26:38,489 --> 02:26:40,424 AND YOU ALSO COULD HAVE THE SAME 3694 02:26:40,491 --> 02:26:42,293 THING AND DANGEROUS GROUND HERE. 3695 02:26:42,360 --> 02:26:44,595 I HAVE BEEN INVOLVED IN LOTS OF 3696 02:26:44,662 --> 02:26:46,531 STUDIES AND IF YOU ALWAYS HAVE 3697 02:26:46,597 --> 02:26:48,065 THE SAME PEOPLE AND YOU NEED 3698 02:26:48,132 --> 02:26:49,534 OTHER VOICES AS WELL. THAT IS 3699 02:26:49,600 --> 02:26:51,169 TRUE IN RESEARCH AND ALSO FOR 3700 02:26:51,235 --> 02:26:53,204 PATIENT PARTNERS AND THEY OFTEN 3701 02:26:53,271 --> 02:26:55,173 HAVE CERTAIN PEOPLE THAT ARE 3702 02:26:55,239 --> 02:26:55,940 ALWAYS THERE. 3703 02:26:56,007 --> 02:26:58,543 THAT MAY NOT BE A GREAT IDEA 3704 02:26:58,609 --> 02:26:58,943 EITHER. 3705 02:26:59,010 --> 02:27:02,013 SO, I THINK, YOU KNOW, YOU TALK 3706 02:27:02,079 --> 02:27:04,015 ABOUT LESSONS LEARNED AND THINGS 3707 02:27:04,081 --> 02:27:04,849 THAT DON'T WORK. 3708 02:27:04,916 --> 02:27:05,917 THOSE ARE IMPORTANT. 3709 02:27:05,983 --> 02:27:08,953 I THINK WE WANT TO EMPOWER 3710 02:27:09,020 --> 02:27:12,356 INVESTIGATORS AND GIVE THEM I 3711 02:27:12,423 --> 02:27:13,524 THINK YOU KNOW CARROTS I THINK 3712 02:27:13,591 --> 02:27:14,792 WORK BETTER THAN STICKS. 3713 02:27:14,859 --> 02:27:17,128 MONEY DOES ACTUALLY IT IS 3714 02:27:17,195 --> 02:27:19,063 SHOCKING TO THINK INVESTIGATORS 3715 02:27:19,130 --> 02:27:20,798 GO ACTUALLY TOWARDS THE MONEY OR 3716 02:27:20,865 --> 02:27:23,134 TOWARDS THE REQUIREMENTS OF RFAS 3717 02:27:23,201 --> 02:27:25,670 BUT THEY DO AND THERE NEEDS TO 3718 02:27:25,736 --> 02:27:27,505 BE A RAMP UP PERIOD AND PEOPLE 3719 02:27:27,572 --> 02:27:29,006 GET SORT OF USED TO IT AND WE 3720 02:27:29,073 --> 02:27:32,176 HAVE TO BE WORRIED ABOUT TOKING 3721 02:27:32,243 --> 02:27:34,278 PATIENT ENGAGEMENT THAT IS NOT 3722 02:27:34,345 --> 02:27:36,380 REAL AND ALSO OVEREXPECTATIONS. 3723 02:27:36,447 --> 02:27:37,515 IT IS A BALANCE AND LIKE YOU 3724 02:27:37,582 --> 02:27:42,086 KNOW IT WHEN YOU SEE IT. 3725 02:27:42,153 --> 02:27:45,056 WE ARE NOT -- I WILL TELL YOU WE 3726 02:27:45,122 --> 02:27:46,457 DON'T HAVE PATIENT WITH 3727 02:27:46,524 --> 02:27:48,359 EVERYTHING WE DO AND MORESO WE 3728 02:27:48,426 --> 02:27:51,062 ARE AND THAT IS THE TYPE OF 3729 02:27:51,128 --> 02:27:51,295 THING. 3730 02:27:51,362 --> 02:27:53,531 THERE IS NO ONE RULE BUT SOME 3731 02:27:53,598 --> 02:27:54,632 SORT OF APPROACH. 3732 02:27:54,699 --> 02:27:57,602 I THINK YOU HAVE TO HELP PEOPLE 3733 02:27:57,668 --> 02:27:58,502 UNDERSTAND WHAT THIS IS. 3734 02:27:58,569 --> 02:28:00,538 BUT I THINK THAT IS TRUE FOR 3735 02:28:00,605 --> 02:28:02,873 OTHER THINGS AND ANALOGY IS 3736 02:28:02,940 --> 02:28:05,309 BASIC INVESTIGATORS FEEL THEY 3737 02:28:05,376 --> 02:28:07,478 KNOW HOW TO DO CLINICAL 3738 02:28:07,545 --> 02:28:09,814 INVESTIGATION AND DO IT AND IT 3739 02:28:09,880 --> 02:28:12,083 IS USUALLY NOT A GREAT IDEA AND 3740 02:28:12,149 --> 02:28:13,718 THEY NEED HELP AND IT IS THE 3741 02:28:13,784 --> 02:28:14,852 SAME TYPE OF THING. 3742 02:28:14,919 --> 02:28:18,556 >> GO AHEAD. AMY AFTER YOUR 3743 02:28:18,623 --> 02:28:21,626 COMMENTS WE WILL HAVE KARL AND 3744 02:28:21,692 --> 02:28:23,194 SUES AND HAVE TO BREAK FOR LUNCH 3745 02:28:23,261 --> 02:28:26,297 BREAK AND WILL COME BACK TO 3746 02:28:26,364 --> 02:28:29,400 ISSUES LATER IN THE DAY. AMY, 3747 02:28:29,467 --> 02:28:29,634 PLEASE. 3748 02:28:29,700 --> 02:28:31,636 >> IF I MAY ADD AND LATE TO 3749 02:28:31,702 --> 02:28:35,006 GETTING IT TO BOB. I CURATED A 3750 02:28:35,072 --> 02:28:37,275 FOUR-PAGE LIST OF RESOURCES OF 3751 02:28:37,341 --> 02:28:39,844 PUBLISHED ARTICLES ON PE 3752 02:28:39,910 --> 02:28:40,611 IMPLEMENTATION STRATEGIES. 3753 02:28:40,678 --> 02:28:43,748 THERE IS NOT MUCH OUT THERE. 3754 02:28:43,814 --> 02:28:45,549 WHAT THERE IS, IT HAS BEEN 3755 02:28:45,616 --> 02:28:48,419 CURATED BY ME AND WILL BE AN AMY 3756 02:28:48,486 --> 02:28:50,288 COMMENT SOMEWHERE IN THERE ABOUT 3757 02:28:50,354 --> 02:28:50,488 THAT. 3758 02:28:50,554 --> 02:28:52,056 HOPEFULLY THAT WILL BE 3759 02:28:52,123 --> 02:28:53,190 DISTRIBUTED TO YOU EITHER 3760 02:28:53,257 --> 02:28:55,593 ALREADY OR SOON THEREAFTER, 3761 02:28:55,660 --> 02:28:56,294 AFTER THIS PROGRAM. 3762 02:28:56,360 --> 02:29:06,937 >> WE HAVE HAD IT. IT IS IN TH 3763 02:29:26,290 --> 02:29:28,492 >> IT SOUNDS REALLY IMPORTANT 3764 02:29:28,559 --> 02:29:30,428 THAT WE BEGIN TO UNDERSTAND ONE 3765 02:29:30,494 --> 02:29:33,597 ANOTHER AND SEE ONE ANOTHER AND 3766 02:29:33,664 --> 02:29:36,033 TO GO OUT AND FIND BEST 3767 02:29:36,100 --> 02:29:37,435 PRACTICES MORE IMPORTANTLY 3768 02:29:37,501 --> 02:29:39,003 THINGS THAT DON'T WORK THAT IS 3769 02:29:39,070 --> 02:29:40,438 NOT SOMETHING PUBLISHABLE OR IF 3770 02:29:40,504 --> 02:29:43,174 IT IS, THEY HAVE WRITTEN THEIR 3771 02:29:43,240 --> 02:29:45,509 NOTES TO THEIR BOSS OR JUSTIFIED 3772 02:29:45,576 --> 02:29:47,178 A BUDGET OR WHATEVER. I CAN 3773 02:29:47,244 --> 02:29:48,846 TELL YOU PATIENT ENGAGEMENT IS 3774 02:29:48,913 --> 02:29:53,584 THE PROCESS. IT IS NOT AN 3775 02:29:53,651 --> 02:29:56,053 EXPENSE ITEM ITSELF. IT IS A 3776 02:29:56,120 --> 02:29:57,822 BETTER WAY OF DOING IT. 3777 02:29:57,888 --> 02:29:59,056 YOU HAVE TO HAVE A PROCESS BY 3778 02:29:59,123 --> 02:30:00,791 WHICH YOU CAN TAP INTO. 3779 02:30:00,858 --> 02:30:04,228 I WISH THERE WAS A POOL OF NIAMS 3780 02:30:04,295 --> 02:30:05,162 PATIENTS THAT ARE DEVELOPING -- 3781 02:30:05,229 --> 02:30:07,565 YOU KNOW, DEVELOPING THE 3782 02:30:07,631 --> 02:30:10,668 CATEGORY. ARE YOU SKIN OR VAS 3783 02:30:10,735 --> 02:30:12,603 CLIETS OR HUMETOID ARTHRITIS OR 3784 02:30:12,670 --> 02:30:15,606 AFT YO POROSIS WHERE YOU CAN 3785 02:30:15,673 --> 02:30:17,541 PARTICIPATE. IT IS LIKE 3786 02:30:17,608 --> 02:30:19,643 CLINICAL TRIALS AND EVEN MORE 3787 02:30:19,710 --> 02:30:23,180 PARTICULAR TO INTERESTED AREAS 3788 02:30:23,247 --> 02:30:25,349 YOU MIGHT BE INTERESTED IN AND 3789 02:30:25,416 --> 02:30:27,051 AT SAME TIME THIS COULD BE A 3790 02:30:27,118 --> 02:30:29,320 GREAT REPOSTORY FOR 3791 02:30:29,387 --> 02:30:30,755 INVESTIGATORS TO TAP INTO. WE 3792 02:30:30,821 --> 02:30:34,358 ARE LOOKING FOR SOMETHING IN 3793 02:30:34,425 --> 02:30:42,933 ALASKA PATIENT PARTS NER /* -- 3794 02:30:43,000 --> 02:30:44,869 PARTNERS -- THESE THAT NIAMS 3795 02:30:44,935 --> 02:30:46,570 COULD DEVELOP WOULD BE REALLY 3796 02:30:46,637 --> 02:30:47,204 HELPFUL. THANK YOU. 3797 02:30:47,271 --> 02:30:50,241 >> THANKS SO MUCH, AMY. WE WILL 3798 02:30:50,307 --> 02:30:51,909 HEAR FROM KARL AND SUES AND 3799 02:30:51,976 --> 02:30:53,043 BREAK FOR LUNCH. 3800 02:30:53,110 --> 02:30:56,881 I WILL CERTAINLY SO MUCH MORE TO 3801 02:30:56,947 --> 02:31:02,453 SAY AND LEARN HERE. 3802 02:31:02,520 --> 02:31:04,121 >> THANK YOU AND TO BOB AND 3803 02:31:04,188 --> 02:31:06,056 PANEL MEMBERS FOR INSPIRING 3804 02:31:06,123 --> 02:31:06,524 TALKS. 3805 02:31:06,590 --> 02:31:10,060 IT 3806 02:31:10,127 --> 02:31:12,797 IT'S A GOOD REMINDER, THE PRIMES 3807 02:31:12,863 --> 02:31:18,135 PEOPLE WHO ARE BENEFITING FROM . 3808 02:31:18,202 --> 02:31:28,345 QUICK QUESTION ABOUT THIS IDEA . 3809 02:31:28,412 --> 02:31:31,515 MAYBE THE PANEL TO SPEAK TO RESO 3810 02:31:31,582 --> 02:31:36,654 SUPPORT IT, I WOULD LIKE TO MAKD 3811 02:31:36,720 --> 02:31:40,391 SOMETIME DOWN THE ROAD ARE NOT Y 3812 02:31:40,458 --> 02:31:43,661 MAY NOT HAVE THE RESOURCES, WHAH 3813 02:31:43,727 --> 02:31:50,367 NIH TO HELP GET THOSE INSTITUTIY 3814 02:31:50,434 --> 02:32:01,111 ARE COMPETITIVE FOR THIS TYPE O 3815 02:32:09,053 --> 02:32:12,623 >> WE CAN WRITE THEM INTO THE BU 3816 02:32:12,690 --> 02:32:13,958 HAVE TO KNOW WHERE I START 3817 02:32:14,024 --> 02:32:21,532 >> I WANTED TO JUST SAY AGAIN TT 3818 02:32:21,599 --> 02:32:30,641 PCORI HAS THIS LAID OUT PRETTY 3819 02:32:30,708 --> 02:32:33,911 ARTFULLY AND SO IT IS BAKED INTO 3820 02:32:33,978 --> 02:32:38,816 THE PSA ITSELF SO THE 3821 02:32:38,883 --> 02:32:39,383 REQUIREMENTS ARE EXPLICITLY 3822 02:32:39,450 --> 02:32:41,585 LISTED, THERE'S BRAIN BEFORE 3823 02:32:41,652 --> 02:32:43,120 THEY APPLY, FOR PATIENT PARTNERS 3824 02:32:43,187 --> 02:32:45,089 BEFORE THEY APPLY. 3825 02:32:45,155 --> 02:32:46,490 THERE'S TRAINING AVAILABLE AFTER 3826 02:32:46,557 --> 02:32:48,359 YOU'RE AWARDED. 3827 02:32:48,425 --> 02:32:51,195 THE BUDGET IS EXPRESSLY -- IT 3828 02:32:51,262 --> 02:32:53,397 CALLS FOR ENGAGEMENT COSTS. 3829 02:32:53,464 --> 02:32:55,232 THE NEW EXPECTATION OF 3830 02:32:55,299 --> 02:32:56,233 ENGAGEMENT GUIDANCE I 3831 02:32:56,300 --> 02:33:01,805 REFERENCED, EVEN TALKS ABOUT 3832 02:33:01,872 --> 02:33:04,875 CONSIDERATIONS LIKE A POINT OF 3833 02:33:04,942 --> 02:33:06,510 CONTACT THAT'S ENGAGEMENT LEAD, 3834 02:33:06,577 --> 02:33:09,713 WHOSE JOB IT IS TO FIND 3835 02:33:09,780 --> 02:33:10,447 PATIENTS, CURATE, FACILITATE, 3836 02:33:10,514 --> 02:33:13,651 NURTURE THAT ELEMENT OF THE 3837 02:33:13,717 --> 02:33:14,084 STUDY. 3838 02:33:14,151 --> 02:33:17,121 AND THIS ONE BIG PICTURE 3839 02:33:17,187 --> 02:33:19,123 CONCEPT, AGAIN PCORI, PETER 3840 02:33:19,189 --> 02:33:20,524 TALKED ABOUT, DR. MERKEL TALKED 3841 02:33:20,591 --> 02:33:22,793 ABOUT HAVING BEEN ONE OF THE 3842 02:33:22,860 --> 02:33:23,627 PILOT AWARDEES, THE MOST 3843 02:33:23,694 --> 02:33:27,464 IMPORTANT PIECE OF ADVICE I 3844 02:33:27,531 --> 02:33:29,199 COULD GIVE HAVING BEEN AT THE 3845 02:33:29,266 --> 02:33:30,935 EARLY DAYS OF PCORI, DON'T 3846 02:33:31,001 --> 02:33:31,168 DABBLE. 3847 02:33:31,235 --> 02:33:33,904 GO DEEP. 3848 02:33:33,971 --> 02:33:36,640 YOU CAN BE NARROW BUT DON'T JUST 3849 02:33:36,707 --> 02:33:38,509 DIP YOUR TOE IN AND LET'S FIND A 3850 02:33:38,576 --> 02:33:40,010 COUPLE PATIENTS AND SEE WHAT 3851 02:33:40,077 --> 02:33:40,244 HAPPENS. 3852 02:33:40,311 --> 02:33:42,446 I WOULD PILOT. 3853 02:33:42,513 --> 02:33:43,414 TAKE ONE FUNDING ANNOUNCEMENT, 3854 02:33:43,480 --> 02:33:47,351 GO DEEP AND BE VERY INTENTIONAL 3855 02:33:47,418 --> 02:33:49,119 AND BAKE THE ENGAGEMENT FROM TIP 3856 02:33:49,186 --> 02:33:51,388 TO TOES, AND THEN LEARN FROM 3857 02:33:51,455 --> 02:33:55,993 THAT AND EXPAND GRADUALLYACROSS 3858 02:33:56,060 --> 02:33:57,628 THE FUNDING PORTFOLIO. 3859 02:33:57,695 --> 02:33:59,029 I THINK DABBLING ONLY REINFORCES 3860 02:33:59,096 --> 02:34:00,264 WHAT DOESN'T WORK BECAUSE IT'S 3861 02:34:00,331 --> 02:34:00,898 NOT MEANINGFUL. 3862 02:34:00,965 --> 02:34:03,000 SO YOU NEED TO REALLY THINK 3863 02:34:03,067 --> 02:34:04,768 ABOUT WHERE COULD WE PILOT, DO 3864 02:34:04,835 --> 02:34:07,605 THIS IN A VERY THOROUGH TRULY 3865 02:34:07,671 --> 02:34:10,107 INTEGRATIVE WAY. 3866 02:34:10,174 --> 02:34:12,076 I SEE MY FRIEND TIFFANY 3867 02:34:12,142 --> 02:34:14,144 MENTIONED LET'S PUT TOGETHER A 3868 02:34:14,211 --> 02:34:15,045 WORK GROUP OR COMMITTEE. 3869 02:34:15,112 --> 02:34:16,580 I WANT TO VOLUNTEER FOR THAT AS 3870 02:34:16,647 --> 02:34:16,880 WELL. 3871 02:34:16,947 --> 02:34:20,384 THIS IS MY PASSION, SETTING 3872 02:34:20,451 --> 02:34:22,019 THESE KINDS OF SYSTEMS UP. 3873 02:34:22,086 --> 02:34:23,721 I'M THRILLED THAT THIS 3874 02:34:23,787 --> 02:34:25,656 DISCUSSION IS HAPPENING. 3875 02:34:25,723 --> 02:34:28,192 THANKS SO MUCH. 3876 02:34:28,258 --> 02:34:29,493 >> YES, AND THANK YOU SO MUCH. 3877 02:34:29,560 --> 02:34:31,996 ON THAT NOTE LET ME JUST REMIND 3878 02:34:32,062 --> 02:34:35,833 THOSE WHO WERE HERE AT THE 3879 02:34:35,899 --> 02:34:37,468 BEGINNING BUT MISSED IT, WE'RE 3880 02:34:37,534 --> 02:34:38,569 PLANTING ON CONTINUING A DEEP 3881 02:34:38,636 --> 02:34:40,304 DIVE ON THIS TOPIC AS WELL AS 3882 02:34:40,371 --> 02:34:45,009 COMMUNITY ENGAGEMENT FOR THE 3883 02:34:45,075 --> 02:34:47,111 NEXT SEVERAL COUNCIL MEETINGS. 3884 02:34:47,177 --> 02:34:49,880 WE RECOGNIZE THERE'S A LOT OF 3885 02:34:49,947 --> 02:34:50,814 COMPLEXITY HERE, AND, YOU KNOW, 3886 02:34:50,881 --> 02:34:53,250 KIND OF HOW TO DO THIS IS NOT 3887 02:34:53,317 --> 02:34:54,885 NECESSARILY ALL MAPPED OUT FOR 3888 02:34:54,952 --> 02:34:56,387 INVESTIGATORS, SO WE LOOK 3889 02:34:56,453 --> 02:34:58,355 FORWARD TO WORKING WITH THOSE OF 3890 02:34:58,422 --> 02:34:59,890 YOU WHO ARE INTERESTED INCLUDING 3891 02:34:59,957 --> 02:35:02,960 OUR MUCH MORE EXTENDED GROUP OF 3892 02:35:03,027 --> 02:35:03,727 ADVOCACY ORGANIZATIONS WHO I'M 3893 02:35:03,794 --> 02:35:06,230 SURE COULD BE GREAT PARTNERS IN 3894 02:35:06,296 --> 02:35:06,964 THIS. 3895 02:35:07,031 --> 02:35:10,300 AND STARTING TO DEVELOP A PLAN 3896 02:35:10,367 --> 02:35:12,536 AND COMPILING THE NECESSARY 3897 02:35:12,603 --> 02:35:14,805 TOOLS AND GUIDANCE SO THAT OUR 3898 02:35:14,872 --> 02:35:17,241 INVESTIGATORS FEEL, YOU KNOW, 3899 02:35:17,307 --> 02:35:19,276 ENABLED, EMPOWERED TO DO THIS. 3900 02:35:19,343 --> 02:35:22,112 I WAS REMINDED OF SOME OF THE 3901 02:35:22,179 --> 02:35:22,780 CHALLENGES OUR INVESTIGATORS 3902 02:35:22,846 --> 02:35:24,982 HAVE FACED WHEN NEW DATA SHARING 3903 02:35:25,049 --> 02:35:27,151 AND MANAGEMENT GUIDELINES COME 3904 02:35:27,217 --> 02:35:30,154 OUT, OKAY, I GET IT, BUT HOW DO 3905 02:35:30,220 --> 02:35:31,555 I DO IT, RIGHT? 3906 02:35:31,622 --> 02:35:33,857 WE DON'T WANT TO PUT UP 3907 02:35:33,924 --> 02:35:35,192 REQUIREMENTS THAT OVERWHELM 3908 02:35:35,259 --> 02:35:37,795 INVESTIGATORS OR THAT MAKE THEM 3909 02:35:37,861 --> 02:35:40,731 FEEL UNABLE TO ADDRESS. 3910 02:35:40,798 --> 02:35:47,071 SO, THANK YOU SO MUCH TO OUR 3911 02:35:47,137 --> 02:35:47,971 THREE PRESENTER TODAY, SUZE, 3912 02:35:48,038 --> 02:35:49,373 AMY, AND WHERE IS PETER? 3913 02:35:49,440 --> 02:35:51,008 THERE'S PETER RIGHT THERE. 3914 02:35:51,075 --> 02:35:53,110 THANK YOU SO MUCH FOR YOUR 3915 02:35:53,177 --> 02:35:54,745 PRESENTATIONS AND YOUR 3916 02:35:54,812 --> 02:35:56,180 CONTRIBUTIONS AND I'M SURE WE'LL 3917 02:35:56,246 --> 02:35:59,016 BE CONTINUING TO ENGAGE ALL 3918 02:35:59,083 --> 02:36:01,118 THREE OF YOU AND MANY OTHERS 3919 02:36:01,185 --> 02:36:01,652 MOVING FORWARD. 3920 02:36:01,719 --> 02:36:03,153 WE'RE NOT DONE WITH THIS TOPIC. 3921 02:36:03,220 --> 02:36:03,921 THANK YOU SO MUCH. 3922 02:36:03,987 --> 02:36:07,324 AMY, THANK YOU FOR PUTTING THOSE 3923 02:36:07,391 --> 02:36:09,093 RESOURCES IN THE e-COUNCIL 3924 02:36:09,159 --> 02:36:09,526 BOOK. 3925 02:36:09,593 --> 02:36:10,160 THAT'S TERRIFIC. 3926 02:36:10,227 --> 02:36:13,263 SO, WE'RE GOING TO BREAK FOR 3927 02:36:13,330 --> 02:36:14,064 LUNCH, RIGHT, DARREN? 3928 02:36:14,131 --> 02:36:14,531 >> TAKE CARE. 3929 02:36:14,598 --> 02:36:16,467 >> THANK YOU SO MUCH. 3930 02:36:16,533 --> 02:36:16,834 AND. 3931 02:36:16,900 --> 02:36:18,769 >> TAKE CARE, EVERYONE. 3932 02:36:18,836 --> 02:36:21,171 >> THANK YOU, AMY AND SUZE. 3933 02:36:21,238 --> 02:36:23,373 >> THANK YOU SO MUCH. 3934 02:36:23,440 --> 02:36:24,875 >> MY UNDERSTANDING IS THAT YOU 3935 02:36:24,942 --> 02:36:26,977 ALL ARE GOING TO HAVE A SITE 3936 02:36:27,044 --> 02:36:30,814 VISIT TO THE NIH CAFETERIA, 3937 02:36:30,881 --> 02:36:32,349 WHICH ANN IS VERY EXCITED ABOUT. 3938 02:36:32,416 --> 02:36:34,518 YOU SAID YOU LOVE THE NIH 3939 02:36:34,585 --> 02:36:35,085 CAFETERIA. 3940 02:36:35,152 --> 02:36:37,488 SO, OKAY, I HOPE IT'S STILL -- 3941 02:36:37,554 --> 02:36:39,356 BUT SO ANN KNOWS WHERE TO GO, 3942 02:36:39,423 --> 02:36:41,191 DOWN ON THE FIRST FLOOR. 3943 02:36:41,258 --> 02:36:42,059 SO, FOLLOW ANN. 3944 02:36:42,126 --> 02:36:45,028 I GUESS THE QUESTION IS DO YOU 3945 02:36:45,095 --> 02:36:48,332 ALL FULLY ENJOY THE AMBIANCE AND 3946 02:36:48,398 --> 02:36:49,433 HAVE YOUR LUNCH THERE OR DO YOU 3947 02:36:49,500 --> 02:36:52,469 WANT TO BRING IT TO THE SIXTH 3948 02:36:52,536 --> 02:36:53,804 FLOOR, WHAT'S THE PLAN? 3949 02:36:53,871 --> 02:36:57,708 >> THAT'S A GOOD QUESTION. 3950 02:36:57,775 --> 02:36:58,709 BEFORE WE FINALIZE THAT WE'LL 3951 02:36:58,776 --> 02:37:04,615 SEE WE'LL COME BACK AT 1:10. 3952 02:37:04,681 --> 02:37:05,282 >> 1:00. 3953 02:37:05,349 --> 02:37:05,716 >> 1:00? 3954 02:37:05,783 --> 02:37:07,885 WE'LL COME BACK AT 1:00 P.M. AND 3955 02:37:07,951 --> 02:37:09,219 WE'LL SEE EVERYBODY THEN, AND 3956 02:37:09,286 --> 02:37:10,754 THEN WE WILL PAUSE THE MEETING 3957 02:37:10,821 --> 02:37:13,257 FOR NOW AND FIGURE OUT THESE 3958 02:37:13,323 --> 02:37:15,926 LOGISTICS. 3959 02:37:15,993 --> 02:37:18,028 >> SO WE'RE GETTING READY TO GET 3960 02:37:18,095 --> 02:37:18,262 STARTED. 3961 02:37:18,328 --> 02:37:19,997 DR. CARTER IS GOING TO KICK OFF 3962 02:37:20,063 --> 02:37:23,133 THIS NEXT SESSION BECAUSE OF HIS 3963 02:37:23,200 --> 02:37:24,368 VERY SIGNIFICANT INVOLVEMENT IN 3964 02:37:24,434 --> 02:37:25,202 THE CLINICAL TRIALS WORKING 3965 02:37:25,269 --> 02:37:26,770 GROUP, BUT I WANTED TO POINT OUT 3966 02:37:26,837 --> 02:37:28,572 TO ALL OF YOU IN THE ROOM THAT 3967 02:37:28,639 --> 02:37:29,973 MAGICALLY AT THE BACK OF THE 3968 02:37:30,040 --> 02:37:33,811 ROOM A COFFEE CART ARRIVED. 3969 02:37:33,877 --> 02:37:36,647 SO, THANKS TO STEPHANIE HERNDON. 3970 02:37:36,713 --> 02:37:38,849 WE'RE GOING TO DO IT EVEN BETTER 3971 02:37:38,916 --> 02:37:41,451 NEXT TIME, AND SORRY TO THOSE OF 3972 02:37:41,518 --> 02:37:43,020 YOU WHO ARE JOINING VIRTUALLY, 3973 02:37:43,086 --> 02:37:51,795 BUT THOSE IN THE ROOM, HELP 3974 02:37:51,862 --> 02:38:02,039 YOURSELF. 3975 02:38:16,420 --> 02:38:20,224 >> CAN YOU HEAR ME OKAY? 3976 02:38:20,290 --> 02:38:20,757 >> YES. 3977 02:38:20,824 --> 02:38:24,595 SO, I WANT TO THANK JOAN BATHON, 3978 02:38:24,661 --> 02:38:30,067 WHO IS THE CHIEF OF RHEUMATOLOGY 3979 02:38:30,133 --> 02:38:32,269 AT COLUMBIA, ALONG WITH STUART 3980 02:38:32,336 --> 02:38:37,841 GOODMAN, WHO IS THE -- WAS AT 3981 02:38:37,908 --> 02:38:39,243 STANFORD, CO-CHAIRS OF THIS 3982 02:38:39,309 --> 02:38:40,244 WORKING GROUP. 3983 02:38:40,310 --> 02:38:42,412 JOAN MENTIONED THIS, THIS 3984 02:38:42,479 --> 02:38:46,250 WORKING GROUP HAS HAD 18 3985 02:38:46,316 --> 02:38:48,118 MEETINGS, AND THE CHAIRS HAD 3986 02:38:48,185 --> 02:38:51,822 ADDITIONAL 18 ON TOP OF THAT. 3987 02:38:51,889 --> 02:39:02,332 AND I WANT TO THANK CHUCK 3988 02:39:07,337 --> 02:39:08,305 WASHBAUM, DEONDRE AND DARREN, IN 3989 02:39:08,372 --> 02:39:11,675 SUPPORT OF THE WORKING GROUP. 3990 02:39:11,742 --> 02:39:13,143 SO, WITHOUT FURTHER ADO, THIS 3991 02:39:13,210 --> 02:39:15,946 GROUP DID -- STUART DID THE 3992 02:39:16,013 --> 02:39:16,980 INTERIM PRESENTATION IN AUGUST, 3993 02:39:17,047 --> 02:39:19,549 AND I THINK JOAN IS GOING TO 3994 02:39:19,616 --> 02:39:20,751 ILLUSTRATE THOSE BRIEFLY. 3995 02:39:20,817 --> 02:39:24,588 BUT WE'VE GOT A PRETTY BIG SLATE 3996 02:39:24,655 --> 02:39:26,089 OF THE COMMITTEE WORKING GROUP, 3997 02:39:26,156 --> 02:39:31,028 A BIG SLATE OF NEW 3998 02:39:31,094 --> 02:39:31,795 RECOMMENDATIONS. 3999 02:39:31,862 --> 02:39:34,865 GROUND RULES ARE THAT A WORKING 4000 02:39:34,932 --> 02:39:36,566 GROUP, THEY ARE FORMED AS A 4001 02:39:36,633 --> 02:39:40,370 WORKING GROUP OF COUNCIL, UNDER 4002 02:39:40,437 --> 02:39:42,773 THE STATUTORY AUTHORITIES FOR 4003 02:39:42,839 --> 02:39:46,176 GETTING INPUT ADVICE TO NIAMS. 4004 02:39:46,243 --> 02:39:49,246 PART OF THAT STATUTORY RULE IS 4005 02:39:49,313 --> 02:39:50,447 THE FINDINGS AND 4006 02:39:50,514 --> 02:39:51,081 RECOMMENDATIONS, QUOTE/UNQUOTE, 4007 02:39:51,148 --> 02:39:52,316 OF THE WORKING GROUP ARE 4008 02:39:52,382 --> 02:39:55,252 PRESENTED TO COUNCIL AND THAT 4009 02:39:55,319 --> 02:39:57,854 IT'S COUNCIL THAT ADVISES THE 4010 02:39:57,921 --> 02:40:00,958 INSTITUTE AS TO WHETHER THEY 4011 02:40:01,024 --> 02:40:04,127 WOULD ACCEPT AND PUT FORWARD 4012 02:40:04,194 --> 02:40:05,329 THOSE FINDINGS AND 4013 02:40:05,395 --> 02:40:05,696 RECOMMENDATIONS. 4014 02:40:05,762 --> 02:40:06,530 SO, DARREN, I DON'T KNOW IF 4015 02:40:06,596 --> 02:40:09,266 THERE'S A VOTE FOR THE COUNCIL 4016 02:40:09,333 --> 02:40:11,001 TO ACCEPT -- NO, NO VOTE, JUST 4017 02:40:11,068 --> 02:40:14,071 DISCUSSION AT THE END OF THE 4018 02:40:14,137 --> 02:40:14,404 PRESENTATION. 4019 02:40:14,471 --> 02:40:15,505 SO, WITH THAT, THANK YOU AGAIN 4020 02:40:15,572 --> 02:40:17,074 TO JOAN BECAUSE SHE REALLY HAS 4021 02:40:17,140 --> 02:40:18,442 DONE THE LION'S SHARE OF THE 4022 02:40:18,508 --> 02:40:20,978 WORK OVER THE LAST TWO MONTHS, 4023 02:40:21,044 --> 02:40:24,014 PULLING TOGETHER A VERY LARGE 4024 02:40:24,081 --> 02:40:28,185 SET OF RECOMMENDATIONS, A LOT 4025 02:40:28,251 --> 02:40:29,953 FROM PRETTY CRUDE TRANSCRIPTS OF 4026 02:40:30,020 --> 02:40:31,455 MEETINGS, FORMULATING INTO A 4027 02:40:31,521 --> 02:40:33,323 SERIES OF BULLET POINTS AND THEN 4028 02:40:33,390 --> 02:40:34,658 HONING THAT DOWN INTO WHAT 4029 02:40:34,725 --> 02:40:37,060 ACTUALLY SHE'S GOING TO PRESENT 4030 02:40:37,127 --> 02:40:40,998 TODAY WHICH ACTUALLY IS MORE 4031 02:40:41,064 --> 02:40:42,299 HIGHLIGHT AND ABBREVIATED FORM 4032 02:40:42,366 --> 02:40:47,771 OF A FULL SLIDE DECK WHICH IS IN 4033 02:40:47,838 --> 02:40:48,638 THE COUNCIL MEMBERS' ELECTRONIC 4034 02:40:48,705 --> 02:40:49,506 COUNCIL BOOK. 4035 02:40:49,573 --> 02:40:51,174 SO JOAN, THANK YOU. 4036 02:40:51,241 --> 02:40:52,042 >> THANKS, BOB. 4037 02:40:52,109 --> 02:40:54,344 I APPRECIATE THE OPPORTUNITY TO 4038 02:40:54,411 --> 02:40:56,413 PRESENT ON BEHALF OF STUART, WHO 4039 02:40:56,480 --> 02:40:58,181 IS SOMEWHERE IN ASIA, AND THE 4040 02:40:58,248 --> 02:40:59,616 COMMITTEE THAT I HAVE A LIST OF 4041 02:40:59,683 --> 02:41:01,651 AT THE END OF THE PRESENTATION 4042 02:41:01,718 --> 02:41:06,390 WHO DID AN ENORMOUS AMOUNT OF 4043 02:41:06,456 --> 02:41:11,628 WORK, AS BOB MENTIONED. 4044 02:41:11,695 --> 02:41:14,031 THE FORMAL CHARGE WAS HOW NIAMS 4045 02:41:14,097 --> 02:41:15,565 COULD SOLICIT AND FUND TRIALS 4046 02:41:15,632 --> 02:41:17,667 WITH THE GREATEST IMPACT IN 4047 02:41:17,734 --> 02:41:19,636 IMPROVING CLINICAL OUTCOMES 4048 02:41:19,703 --> 02:41:22,139 ACROSS OUR NIGH AMOUNTS 4049 02:41:22,205 --> 02:41:23,140 DISEASE -- SET OF DISEASES, 4050 02:41:23,206 --> 02:41:24,775 WHETHER RARE OR COMMON, AND 4051 02:41:24,841 --> 02:41:25,842 FOCUS ON IMPROVING PREVENTION, 4052 02:41:25,909 --> 02:41:27,077 DIAGNOSIS, AND TREATMENT OF 4053 02:41:27,144 --> 02:41:28,912 PEOPLE WITH THESE DISEASES AND 4054 02:41:28,979 --> 02:41:29,212 CONDITIONS. 4055 02:41:29,279 --> 02:41:30,447 AND THEN OF COURSE AS WE'RE 4056 02:41:30,514 --> 02:41:32,849 DOING TODAY TO PRESENT THESE 4057 02:41:32,916 --> 02:41:35,152 RECOMMENDATIONS TO THE ADVISORY 4058 02:41:35,218 --> 02:41:35,619 COUNCIL. 4059 02:41:35,685 --> 02:41:39,189 SO, SIX OF THE MAIN QUESTIONS 4060 02:41:39,256 --> 02:41:41,491 ARE CITED HERE, AND WE'LL GO 4061 02:41:41,558 --> 02:41:44,561 THROUGH ONE BY ONE, FIRST TWO 4062 02:41:44,628 --> 02:41:47,631 DEAL WITH TRIAL IMPACT, SECOND 4063 02:41:47,697 --> 02:41:49,833 DEAL WITH INVESTIGATOR AND 4064 02:41:49,900 --> 02:41:51,134 COMMUNITY ENGAGEMENT, THE LAST 4065 02:41:51,201 --> 02:41:53,804 TWO DEAL WITH TRIALS, BUDGETS, 4066 02:41:53,870 --> 02:41:54,971 AND SIZE. 4067 02:41:55,038 --> 02:41:55,872 THERE WERE ADDITIONAL 4068 02:41:55,939 --> 02:41:57,941 CONSIDERATIONS THAT WE AS A 4069 02:41:58,008 --> 02:42:01,645 WORKING GROUP CONSIDERED, AND 4070 02:42:01,711 --> 02:42:02,846 THOSE ARE QUESTIONS, TWO THREE, 4071 02:42:02,913 --> 02:42:04,081 AND FOUR OF THE QUESTION ONE WAS 4072 02:42:04,147 --> 02:42:05,916 ONE OF THE ORIGINAL SEVEN 4073 02:42:05,982 --> 02:42:07,784 QUESTIONS WHICH WE'LL GET TO. 4074 02:42:07,851 --> 02:42:08,985 I'LL REITERATE EACH AS WE GET 4075 02:42:09,052 --> 02:42:10,954 ALONG SO YOU DON'T HAVE TO 4076 02:42:11,021 --> 02:42:12,155 REMEMBER THEM. 4077 02:42:12,222 --> 02:42:14,458 AS BOB MENTIONED WE DID PRESENT 4078 02:42:14,524 --> 02:42:15,459 PRELIMINARY RECOMMENDATIONS TO 4079 02:42:15,525 --> 02:42:16,760 COUNCIL IN AUGUST, AND IT'S 4080 02:42:16,827 --> 02:42:18,929 EXCITE 4081 02:42:18,995 --> 02:42:20,363 EXCITING THAT THEY HAVE ALREADY 4082 02:42:20,430 --> 02:42:21,798 BEEN ADOPTED. 4083 02:42:21,865 --> 02:42:23,300 FIRST WAS THAT NIAMS SHOULD 4084 02:42:23,366 --> 02:42:25,168 CONSIDER DIFFERENT OPTIONS FOR 4085 02:42:25,235 --> 02:42:27,170 THE SMALL EXPLORATORY OR 4086 02:42:27,237 --> 02:42:33,076 FEASIBILITY CLINICAL TRIAL 4087 02:42:33,143 --> 02:42:35,045 MECHANISM THAT CURRENTLY 4088 02:42:35,112 --> 02:42:36,880 EXISTS -- THAT EXISTED AT THAT 4089 02:42:36,947 --> 02:42:39,216 TIME, R21, SHIFT TO ONE WITH 4090 02:42:39,282 --> 02:42:41,618 LONGER BUDGET AND TIME FRAME, 4091 02:42:41,685 --> 02:42:42,719 THE RATIONALE WAS EXISTING R21 4092 02:42:42,786 --> 02:42:46,857 WAS TOO SHORT AND BUDGET WAS TOO 4093 02:42:46,923 --> 02:42:48,158 SMALL TO EFFECTIVELY CONDUCT AN 4094 02:42:48,225 --> 02:42:49,059 EXPLORATORY CLINICAL TRIAL. 4095 02:42:49,126 --> 02:42:50,560 IN RESPONSE TO THIS 4096 02:42:50,627 --> 02:42:51,561 RECOMMENDATION NIAMS HAS ALREADY 4097 02:42:51,628 --> 02:42:55,499 DEVELOPED AND PUBLISHED A NEW 4098 02:42:55,565 --> 02:42:59,436 R61 SMALL EXPLORATORY TRIALS 4099 02:42:59,503 --> 02:43:02,172 NOTEBOOK TO REPLACE THAT R21, 4100 02:43:02,239 --> 02:43:08,845 DIRECT CAP FROM 400 TO 600,000 4101 02:43:08,912 --> 02:43:09,946 EXTENDED TO THREE-YEAR PERIOD, 4102 02:43:10,013 --> 02:43:12,549 NOW 12 PAGES ARE ALLOWED GIVING 4103 02:43:12,616 --> 02:43:14,084 MORE CHANCE TO DISCUSS THE 4104 02:43:14,151 --> 02:43:14,751 SCIENCE. 4105 02:43:14,818 --> 02:43:16,486 SO THAT'S VERY EXCITING. 4106 02:43:16,553 --> 02:43:18,054 THE SECOND RECOMMENDATION WAS 4107 02:43:18,121 --> 02:43:20,357 THAT NIAMS SHOULD CONSIDER 4108 02:43:20,423 --> 02:43:22,659 ESTABLISHING A TWO-FACE 4109 02:43:22,726 --> 02:43:24,728 MILESTONE-BASED AWARDS PROCESS 4110 02:43:24,794 --> 02:43:26,229 USING UG3/UH3 MECHANISM FOR 4111 02:43:26,296 --> 02:43:28,098 LARGE CLINICAL TRIALS. 4112 02:43:28,165 --> 02:43:32,769 AND THE BACKGROUND BRIEFLY WAS 4113 02:43:32,836 --> 02:43:35,772 THAT R 34 PLANNING GRANT 4114 02:43:35,839 --> 02:43:37,641 FOLLOWED BY U01 APPLICATION THAT 4115 02:43:37,707 --> 02:43:38,942 WAS THE PREVIOUS MECHANISM TO 4116 02:43:39,009 --> 02:43:40,210 GET A CLINICAL TRIAL APPROVED 4117 02:43:40,277 --> 02:43:42,345 AND FUNDED WAS A LONG PROCESS 4118 02:43:42,412 --> 02:43:44,981 WITH TWO SEPARATE SUBMISSIONS 4119 02:43:45,048 --> 02:43:48,451 AND TWO SEPARATE REVIEW GROUPS, 4120 02:43:48,518 --> 02:43:50,420 AND TWO REVIEW PROCESSES SO BY 4121 02:43:50,487 --> 02:43:51,755 THE TIME THE STUDY WAS FUNDED 4122 02:43:51,821 --> 02:43:53,056 THE IDEA FOR THE TRIAL MIGHT 4123 02:43:53,123 --> 02:43:55,125 HAVE GOTTEN A BIT STALE AND NOT 4124 02:43:55,192 --> 02:43:59,930 BE AS NOVEL AS IT ONCE WAS. 4125 02:43:59,996 --> 02:44:02,365 UG3/UH3 IS A COMPRESSED 4126 02:44:02,432 --> 02:44:03,300 MECHANISM WHICH REQUIRES ONE 4127 02:44:03,366 --> 02:44:07,837 APPLICATION, AND THEN IF THE 4128 02:44:07,904 --> 02:44:09,806 PERSON MEETS MILESTONES THEY 4129 02:44:09,873 --> 02:44:11,675 PROGRESS SEAMLESSLY INTO THE 4130 02:44:11,741 --> 02:44:12,108 UH3. 4131 02:44:12,175 --> 02:44:14,311 I'M HAPPY TO SAY NIAMS ACCEPTED 4132 02:44:14,377 --> 02:44:16,046 THIS RECOMMENDATION AND HAS 4133 02:44:16,112 --> 02:44:17,480 DEVELOPED AND PUBLISHED JUST IN 4134 02:44:17,547 --> 02:44:22,819 THE LAST COUPLE DAYS A NEW 4135 02:44:22,886 --> 02:44:25,589 UG3/UH3 PHASED CLINICAL TRIALS 4136 02:44:25,655 --> 02:44:28,191 NOFO, VERY EXCITING, WE'RE HAPPY 4137 02:44:28,258 --> 02:44:29,726 THAT RECOMMENDATION WAS FOUND TO 4138 02:44:29,793 --> 02:44:30,594 BE GOOD. 4139 02:44:30,660 --> 02:44:33,763 SO LET US FOCUS ON THE NEW 4140 02:44:33,830 --> 02:44:35,398 RECOMMENDATIONS TODAY. 4141 02:44:35,465 --> 02:44:36,499 AND AGAIN JUST REMINDING OF THE 4142 02:44:36,566 --> 02:44:38,568 THREE AREAS WE'LL TALK ABOUT 4143 02:44:38,635 --> 02:44:41,338 NOW, TRIAL IMPACT, COMMUNITY 4144 02:44:41,404 --> 02:44:42,305 ENGAGEMENT, AND BUDGETS AND 4145 02:44:42,372 --> 02:44:43,707 SIZES OF TRIALS. 4146 02:44:43,773 --> 02:44:44,908 FIRST QUESTION, WHAT TYPES OF 4147 02:44:44,975 --> 02:44:47,110 CLINICAL TRIALS HAVE THE 4148 02:44:47,177 --> 02:44:49,412 GREATEST IMPACT ON PEOPLE'S 4149 02:44:49,479 --> 02:44:50,513 LIVES. 4150 02:44:50,580 --> 02:44:53,350 AND WE STRONGLY FELT AS A 4151 02:44:53,416 --> 02:44:55,852 WORKING GROUP NIAMS SHOULD 4152 02:44:55,919 --> 02:44:57,187 CONSIDER SHIFTING STRATEGY FOR 4153 02:44:57,254 --> 02:44:57,954 MAXIMIZING NUMBER OF FUNDED 4154 02:44:58,021 --> 02:45:01,558 TRIALS TO FOCUS ON FUNDING THE 4155 02:45:01,625 --> 02:45:06,930 MOST IMPACTFUL TRIALS. 4156 02:45:06,997 --> 02:45:09,466 AND WHAT IS IMPACTFUL? 4157 02:45:09,532 --> 02:45:13,169 OBVIOUS CRITERION MIGHT BE A 4158 02:45:13,236 --> 02:45:15,472 TRIAL THAT PRODUCES FINDINGS 4159 02:45:15,538 --> 02:45:18,642 LIKELY TO INFORM TREATMENT 4160 02:45:18,708 --> 02:45:18,908 GUIDELINE. 4161 02:45:18,975 --> 02:45:21,511 THE SECOND RECOMMENDATION IS 4162 02:45:21,578 --> 02:45:22,579 NIAMS SHOULD PRIORITIZE SIMPLE 4163 02:45:22,646 --> 02:45:25,615 TRIALS THAT EMPHASIZE IMPACT OF 4164 02:45:25,682 --> 02:45:26,149 INTERVENTION, TAKING INTO 4165 02:45:26,216 --> 02:45:28,718 ACCOUNT THE EFFECT SIZE OF THAT 4166 02:45:28,785 --> 02:45:29,919 INTERVENTION AND BURDEN OF 4167 02:45:29,986 --> 02:45:32,522 DISEASE, BOTH AT INDIVIDUAL AND 4168 02:45:32,589 --> 02:45:33,556 POPULATION LEVELS. 4169 02:45:33,623 --> 02:45:35,158 TO TRANSLATE THAT, FOR EXAMPLE, 4170 02:45:35,225 --> 02:45:35,925 INTERVENTIONS THAT HAVE THE 4171 02:45:35,992 --> 02:45:37,894 POTENTIAL TO HAVE A VERY 4172 02:45:37,961 --> 02:45:40,096 PROFOUND IMPACT IN A RARE 4173 02:45:40,163 --> 02:45:41,731 DISEASE SHOULD IDEALLY BE 4174 02:45:41,798 --> 02:45:43,166 BALANCED WITH INTERVENTIONS THAT 4175 02:45:43,233 --> 02:45:44,901 MIGHT HAVE SMALLER EFFECTS BUT 4176 02:45:44,968 --> 02:45:48,204 APPLIED TO A VERY COMMON 4177 02:45:48,271 --> 02:45:48,538 DISEASE. 4178 02:45:48,605 --> 02:45:49,839 AND THE THIRD RECOMMENDATION WAS 4179 02:45:49,906 --> 02:45:52,375 THAT NIAMS SHOULD ALIGN WITH 4180 02:45:52,442 --> 02:45:53,476 RELEVANT PROFESSIONAL AND 4181 02:45:53,543 --> 02:45:56,646 PATIENT COMMUNITIES TO BEST 4182 02:45:56,713 --> 02:45:59,082 UNDERSTAND THE VIEWS OF THESE 4183 02:45:59,149 --> 02:46:00,383 STAKEHOLDERS OF THEIR BIGGEST 4184 02:46:00,450 --> 02:46:00,717 UNMET NEEDS. 4185 02:46:00,784 --> 02:46:03,987 WE'RE GOING TO COME BACK TO THIS 4186 02:46:04,054 --> 02:46:06,923 THEME LATER, POINT NUMBER 3. 4187 02:46:09,559 --> 02:46:10,827 HOW DOES ONE JUDGE THE IMPACT OF 4188 02:46:10,894 --> 02:46:12,262 A CLINICAL TRIAL? 4189 02:46:12,329 --> 02:46:16,232 WE DO THAT TO SOME EXTENT DURING 4190 02:46:16,299 --> 02:46:17,634 STUDY SECTION REVIEWS, BUT 4191 02:46:17,701 --> 02:46:20,270 WORKING GROUP FELT VERY STRONGLY 4192 02:46:20,337 --> 02:46:21,805 THAT TO BETTER ASSESS TRIAL 4193 02:46:21,871 --> 02:46:23,573 IMPACT NIAMS SHOULD CONSIDER 4194 02:46:23,640 --> 02:46:25,008 FORMAL ROLE FOR COUNCIL, THIS 4195 02:46:25,075 --> 02:46:27,844 ADVISORY COUNCIL AS A SECOND 4196 02:46:27,911 --> 02:46:29,279 LEVEL OF REVIEW. 4197 02:46:29,346 --> 02:46:37,020 THE RATIONALE FOR THAT, STUDY 4198 02:46:37,087 --> 02:46:40,323 SECTIONS ARE EXCELLENT AT 4199 02:46:40,390 --> 02:46:41,191 SCORING BUT IMPACT POSSIBLY 4200 02:46:41,257 --> 02:46:43,693 SLIPS THROUGH THE CRACKS IN THE 4201 02:46:43,760 --> 02:46:44,828 FINAL RECOMMENDATIONS. 4202 02:46:44,894 --> 02:46:51,801 WE THOUGHT NIAMS COUNCIL WAS 4203 02:46:51,868 --> 02:46:53,203 OPTIMALLY POSITIONED TO CONDUCT 4204 02:46:53,269 --> 02:46:54,971 SECOND LEVEL, GREAT EXPERTISE IN 4205 02:46:55,038 --> 02:46:57,040 THE ROOM AND ONLINE REPRESENTING 4206 02:46:57,107 --> 02:47:01,077 MULTIPLE DISEASE AREAS, AND 4207 02:47:01,144 --> 02:47:03,913 DIFFERENT GROUPS, BOTH 4208 02:47:03,980 --> 02:47:04,381 PHYSICIANS, PhDs, AND 4209 02:47:04,447 --> 02:47:05,548 PATIENTS, ET CETERA. 4210 02:47:05,615 --> 02:47:08,952 AND ALSO THIS COULD EASILY BE 4211 02:47:09,018 --> 02:47:10,820 CONDUCTED AND VOTED ON DURING 4212 02:47:10,887 --> 02:47:12,021 YOUR COUNCIL MEETINGS. 4213 02:47:12,088 --> 02:47:14,524 SO IT WOULD BE UP TO OBVIOUSLY 4214 02:47:14,591 --> 02:47:16,493 NIAMS TO DEVELOP A PROCESS IF 4215 02:47:16,559 --> 02:47:17,527 THEY ADOPTED THIS RECOMMENDATION 4216 02:47:17,594 --> 02:47:18,895 BUT WE THOUGHT ONE WAY TO DO 4217 02:47:18,962 --> 02:47:23,066 THIS WOULD BE THAT THE COUNCIL 4218 02:47:23,133 --> 02:47:25,568 COULD IDENTIFY OR -- SORRY, 4219 02:47:25,635 --> 02:47:27,003 PROGRAM OFFICERS COULD IDENTIFY 4220 02:47:27,070 --> 02:47:29,506 ALL TRIAL APPLICATIONS WITH 4221 02:47:29,572 --> 02:47:30,607 BUDGET GREATER THAN $500,000 OR 4222 02:47:30,673 --> 02:47:32,375 GREATER PER YEAR AND TARGET FOR 4223 02:47:32,442 --> 02:47:34,444 REVIEW AT THE MEETING. 4224 02:47:34,511 --> 02:47:36,513 THE P.O.s WOULD WRITE UP A 4225 02:47:36,579 --> 02:47:41,084 SHORT SUMMARY OF THE TRIAL AND 4226 02:47:41,151 --> 02:47:42,252 ITS POTENTIAL IMPACT, TWO OR 4227 02:47:42,318 --> 02:47:44,187 THREE COUNCIL MEMBERS WOULD BE 4228 02:47:44,254 --> 02:47:45,388 ASSIGNED TO REVIEW THAT 4229 02:47:45,455 --> 02:47:49,092 APPLICATION BEFORE THE COUNCIL 4230 02:47:49,159 --> 02:47:49,759 MEETING. 4231 02:47:49,826 --> 02:47:51,961 IT HAS ACCESS TO P.O.'S 4232 02:47:52,028 --> 02:47:53,263 WRITE-UP, APPLICATION AND STUDY 4233 02:47:53,329 --> 02:47:53,696 SECTION'S REVIEW. 4234 02:47:53,763 --> 02:47:57,734 AND THEY WOULD BE ASKED TO WRITE 4235 02:47:57,801 --> 02:47:58,635 A SMALL SUMMARY AND 4236 02:47:58,701 --> 02:47:59,602 RECOMMENDATION AND PRESENT IT AT 4237 02:47:59,669 --> 02:48:00,804 THE COUNCIL MEETING AND THE 4238 02:48:00,870 --> 02:48:02,672 COUNCIL COULD VOTE ON THIS AT 4239 02:48:02,739 --> 02:48:03,540 THAT TIME. 4240 02:48:03,606 --> 02:48:06,042 SO IT DOES ADD EXTRA WORK TO 4241 02:48:06,109 --> 02:48:06,709 COUNCIL BUT WE THOUGHT THAT 4242 02:48:06,776 --> 02:48:10,880 COULD BE A VERY HELPFUL WAY TO 4243 02:48:10,947 --> 02:48:12,515 REALLY WEED OUT OR SELECT OUT 4244 02:48:12,582 --> 02:48:18,321 TRIALS WITH THE GREATEST IMPACT. 4245 02:48:18,388 --> 02:48:23,760 SECOND YES, WHAT IS NIAMS REACH 4246 02:48:23,827 --> 02:48:25,862 IN THE LANDSCAPE, AGAIN THINKING 4247 02:48:25,929 --> 02:48:27,730 ABOUT IMPACT, THE GROUP FELT 4248 02:48:27,797 --> 02:48:29,232 NIAMS SHOULD EMPHASIZE STUDIES 4249 02:48:29,299 --> 02:48:32,168 THAT ADVANCE OR IMPACT CLINICAL 4250 02:48:32,235 --> 02:48:34,270 MANAGEMENT AND GUIDELINES. 4251 02:48:34,337 --> 02:48:35,805 THE NIAMS UNIQUE NICHE IS 4252 02:48:35,872 --> 02:48:38,074 DEFINED BY AREAS WE THOUGHT ARE 4253 02:48:38,141 --> 02:48:40,076 NOT FUNDED BY INDUSTRY WITH 4254 02:48:40,143 --> 02:48:43,446 LIMITED BUDGET OF NIAMS, IT'S 4255 02:48:43,513 --> 02:48:44,547 IMPOSSIBLE TO COMPETE FOR 4256 02:48:44,614 --> 02:48:46,983 INDUSTRY-SPONSORED LARGE DRUG 4257 02:48:47,050 --> 02:48:49,052 TRIALS, FOR EXAMPLE. 4258 02:48:49,118 --> 02:48:51,921 LASTLY, WE THOUGHT NIAMS SHOULD 4259 02:48:51,988 --> 02:48:53,756 CONSIDER TRIAL SELECTION PROCESS 4260 02:48:53,823 --> 02:48:55,258 WITH SPECIFIC CRITERIA FOR 4261 02:48:55,325 --> 02:48:59,128 GAME-CHANGING RESEARCH IN THE 4262 02:48:59,195 --> 02:48:59,796 VARIOUS NOFOs, GAME-CHANGING 4263 02:48:59,863 --> 02:49:01,998 MEANING HIGH IMPACT, THINGS THAT 4264 02:49:02,065 --> 02:49:05,502 WILL CHANGE THE LIVES THE 4265 02:49:05,568 --> 02:49:09,873 PATIENTS WITH OUR ILLNESSES. 4266 02:49:09,939 --> 02:49:11,708 THE THIRD QUESTION REFERRED TO 4267 02:49:11,774 --> 02:49:14,244 REACHING OUT TO THE EXTRAMURAL 4268 02:49:14,310 --> 02:49:15,778 COMMUNITY, SHOULD NIAMS SOLICIT 4269 02:49:15,845 --> 02:49:18,515 TOPICS TO PRIORITIZE FROM THE 4270 02:49:18,581 --> 02:49:20,817 EXTRAMURAL COMMUNITY. 4271 02:49:20,884 --> 02:49:21,618 WE AGREED, YES, INPUT SHOULD BE 4272 02:49:21,684 --> 02:49:23,119 SOUGHT IN THE FULL RANGE OF 4273 02:49:23,186 --> 02:49:24,888 AREAS OF THE NIAMS MISSION FROM 4274 02:49:24,954 --> 02:49:27,490 A BROAD ARRAY OF STAKEHOLDERS, 4275 02:49:27,557 --> 02:49:30,793 THESE WOULD INCLUDE ACADEMIA, 4276 02:49:30,860 --> 02:49:31,528 PROFESSIONAL SOCIETIES, 4277 02:49:31,594 --> 02:49:32,128 VOLUNTARY ORGANIZATIONS, AND 4278 02:49:32,195 --> 02:49:34,297 COMMUNITY GROUPS SUCH AS THOSE 4279 02:49:34,364 --> 02:49:35,632 REPRESENTED IN THE NIAMS 4280 02:49:35,698 --> 02:49:36,065 COALITION. 4281 02:49:36,132 --> 02:49:38,134 AND WE REALIZE YOU DO A LOT OF 4282 02:49:38,201 --> 02:49:41,838 THIS ALREADY BUT IT COULD BE 4283 02:49:41,905 --> 02:49:43,740 MORE FORMALIZED AND EXPANDED. 4284 02:49:43,806 --> 02:49:45,174 WE THOUGHT STRONGLY INTERACTIONS 4285 02:49:45,241 --> 02:49:47,777 WITH COMMUNITY GROUPS SHOULD 4286 02:49:47,844 --> 02:49:48,978 BIDIRECTIONAL AND OBTAINED IN 4287 02:49:49,045 --> 02:49:49,646 COORDINATED AND SUSTAINED 4288 02:49:49,712 --> 02:49:50,079 FASHION. 4289 02:49:50,146 --> 02:49:52,916 THE GOAL OF THIS IS TO FOSTER 4290 02:49:52,982 --> 02:49:55,685 AND BUILD COMMUNITY'S CONFIDENCE 4291 02:49:55,752 --> 02:49:56,419 IN CLINICAL RESEARCH PROCESS, 4292 02:49:56,486 --> 02:49:58,521 WOULD RESULT AT LEAST IN 4293 02:49:58,588 --> 02:50:00,356 BUILDING CONFIDENCE IN THE 4294 02:50:00,423 --> 02:50:01,457 RESEARCH PROCESSES. 4295 02:50:01,524 --> 02:50:03,126 NIAMS SHOULD IDENTIFY AND 4296 02:50:03,192 --> 02:50:05,094 PUBLISH KEY AREAS OF INTEREST 4297 02:50:05,161 --> 02:50:06,629 AND SUPPORT INVESTIGATORS 4298 02:50:06,696 --> 02:50:07,263 PURSUING NOVEL APPROACHES THAT 4299 02:50:07,330 --> 02:50:09,465 ADDRESS THE RESEARCH GAPS THAT 4300 02:50:09,532 --> 02:50:13,836 WERE DEFINED IN CONCERT WITH 4301 02:50:13,903 --> 02:50:15,939 EXTRAMURAL COMMUNITY. 4302 02:50:16,005 --> 02:50:17,907 LASTLY, RECOMMEND AS ALREADY 4303 02:50:17,974 --> 02:50:19,976 DONE, DISSEMINATE NIAMS AREA OF 4304 02:50:20,043 --> 02:50:22,145 INTEREST BY LISTING THEM ON THE 4305 02:50:22,211 --> 02:50:24,914 WEBSITE AND ISSUING NOSIs AND 4306 02:50:24,981 --> 02:50:29,085 NOFOs. 4307 02:50:29,152 --> 02:50:30,920 FOURTH QUESTION HOW CAN NIAMS 4308 02:50:30,987 --> 02:50:32,255 BETTER SUPPORT CLINICAL TRIAL 4309 02:50:32,322 --> 02:50:33,590 APPLICANTS, A VERY LARGE LIST OF 4310 02:50:33,656 --> 02:50:35,325 BULLET POINTS HERE BUT WE TRIED 4311 02:50:35,391 --> 02:50:38,261 TO CONDENSE THEM AND DIVIDED 4312 02:50:38,328 --> 02:50:41,664 THEM INTO TWO SECTIONS, ONE IS 4313 02:50:41,731 --> 02:50:43,399 BY DEVELOPING AND PROMOTING 4314 02:50:43,466 --> 02:50:44,601 INFORMATIONAL AND EDUCATIONAL 4315 02:50:44,667 --> 02:50:50,306 INITIATIVES, THE OTHER IS BY 4316 02:50:50,373 --> 02:50:53,042 EXPANDING NIAMS INSIGHT. 4317 02:50:53,109 --> 02:50:54,911 THE FIRST ONE, WE KNOW NIAMS 4318 02:50:54,978 --> 02:50:58,414 DOES A NICE JOB OF PROVIDING 4319 02:50:58,481 --> 02:50:59,949 ACCESS TO A LOT OF INFORMATION, 4320 02:51:00,016 --> 02:51:01,384 SOMETIMES IT'S HARD TO FIND OR 4321 02:51:01,451 --> 02:51:05,088 HASN'T BEEN UPDATED IN SOME 4322 02:51:05,154 --> 02:51:05,321 CASES. 4323 02:51:05,388 --> 02:51:07,624 SO WE ARE PUTTING FOUR MAJOR 4324 02:51:07,690 --> 02:51:09,058 BULLET POINTS HERE THAT I THINK 4325 02:51:09,125 --> 02:51:09,826 WE THOUGHT WOULD HELP. 4326 02:51:09,892 --> 02:51:11,995 ONE OF THE MOST IMPORTANT IS 4327 02:51:12,061 --> 02:51:13,863 ENCOURAGING APPLICANTS TO 4328 02:51:13,930 --> 02:51:15,398 COMMUNICATE EARLY WITH PROGRAM 4329 02:51:15,465 --> 02:51:17,100 DIRECTORS. 4330 02:51:17,166 --> 02:51:19,135 WHILE THE PROGRAM DIRECTORS DO 4331 02:51:19,202 --> 02:51:21,304 THOSE, THEY ARE REALLY COMMITTED 4332 02:51:21,371 --> 02:51:24,474 TO THIS, BUT WE ALL HAVE 4333 02:51:24,540 --> 02:51:26,342 EXPERIENCES WITH JUNIOR 4334 02:51:26,409 --> 02:51:27,744 INVESTIGATORS THINKING THAT NIH 4335 02:51:27,810 --> 02:51:28,845 FOLKS ARE OFF LIMITS, THEY ARE 4336 02:51:28,911 --> 02:51:30,279 NOT ALLOWED TO TALK TO THEM. 4337 02:51:30,346 --> 02:51:33,583 SO WE DO AT OUR END ENCOURAGE 4338 02:51:33,650 --> 02:51:38,488 THEM TO ALWAYS CONTACT THE 4339 02:51:38,554 --> 02:51:40,356 P.O.s AT NIAMS BUT I THINK IF 4340 02:51:40,423 --> 02:51:44,193 IT'S A LITTLE BIT MORE OBVIOUS 4341 02:51:44,260 --> 02:51:46,329 AND IT'S PROMOTED BROADLY, IN 4342 02:51:46,396 --> 02:51:47,230 WHATEVER COMMUNICATIONS YOU WANT 4343 02:51:47,296 --> 02:51:49,999 TO USE, THAT WOULD BE REALLY 4344 02:51:50,066 --> 02:51:52,802 HELPFUL. 4345 02:51:52,869 --> 02:51:53,903 SECOND TO CONDUCT WEBINARS AND 4346 02:51:53,970 --> 02:51:56,472 COMMUNICATION FOR NEW TRIAL 4347 02:51:56,539 --> 02:51:59,609 NOFOs, TO A LARGE EXTENT BUT 4348 02:51:59,676 --> 02:52:04,981 PUTTING THAT IN PRINT. 4349 02:52:05,048 --> 02:52:06,416 PROVIDE TOOLS FOR INVESTIGATORS, 4350 02:52:06,482 --> 02:52:07,283 CENTRAL AREAS WHERE INFORMATION 4351 02:52:07,350 --> 02:52:11,254 FOR CLINICAL TRIALS IS EASILY 4352 02:52:11,320 --> 02:52:11,454 FOUND. 4353 02:52:11,521 --> 02:52:12,355 THIS COULD INCLUDE LESSONS 4354 02:52:12,422 --> 02:52:21,397 LEARNED, TOOLS FOR DATA 4355 02:52:21,464 --> 02:52:22,298 REPOSITORIES, COMPILE 4356 02:52:22,365 --> 02:52:25,068 INFORMATION THAT INVESTIGATORS 4357 02:52:25,134 --> 02:52:29,072 COULD BE USED TO IDENTIFY SITES 4358 02:52:29,138 --> 02:52:30,173 AND DEVELOP GUIDANCE FOR 4359 02:52:30,239 --> 02:52:31,040 INVESTIGATORS ON FUNDING 4360 02:52:31,107 --> 02:52:31,808 PARTNERSHIPS. 4361 02:52:31,874 --> 02:52:33,142 WE HAVE TO GET PERMISSION FOR 4362 02:52:33,209 --> 02:52:36,012 CLINICAL TRIAL APPLICATION THAT 4363 02:52:36,079 --> 02:52:38,281 WILL REQUEST GREATER THAN 4364 02:52:38,347 --> 02:52:40,249 $500,000 PER YEAR, AND 4365 02:52:40,316 --> 02:52:42,685 OFTENTIMES PARTNERSHIPS WITH 4366 02:52:42,752 --> 02:52:44,954 OTHER FUNDING ORGANIZATIONS OR 4367 02:52:45,021 --> 02:52:45,855 OTHER INSTITUTES ARE NECESSARY 4368 02:52:45,922 --> 02:52:52,295 IN ORDER TO MOVE A TRIAL 4369 02:52:52,361 --> 02:52:53,930 FORWARD, A VERY OPAQUE PROCESS, 4370 02:52:53,996 --> 02:52:56,232 INVESTIGATORS DON'T KNOW HOW TO 4371 02:52:56,299 --> 02:52:56,999 APPROACH, ESPECIALLY JUNIOR 4372 02:52:57,066 --> 02:52:57,333 INVESTIGATORS. 4373 02:52:57,400 --> 02:52:59,702 AND WE KNOW THE NIAMS FOLKS ARE 4374 02:52:59,769 --> 02:53:01,671 ANXIOUS TO HELP INVESTIGATORS 4375 02:53:01,738 --> 02:53:03,639 WITH THIS SO MAYBE DEVELOPING, 4376 02:53:03,706 --> 02:53:06,175 ACKNOWLEDGING THIS SOMEWHERE IN 4377 02:53:06,242 --> 02:53:09,579 A GUIDANCE DOCUMENT, AND 4378 02:53:09,645 --> 02:53:11,814 DEVELOPING SOME TIPS FOR THE 4379 02:53:11,881 --> 02:53:17,086 INVESTIGATORS TO ACCESS WOULD BE 4380 02:53:17,153 --> 02:53:17,286 GREAT. 4381 02:53:17,353 --> 02:53:18,321 NIAMS COULD BETTER SUPPORT 4382 02:53:18,387 --> 02:53:22,458 CLINICAL TRIAL APPLICANTS BY 4383 02:53:22,525 --> 02:53:23,793 EXPANDING NIAMS OVERSIGHT. 4384 02:53:23,860 --> 02:53:25,862 THE FIRST RECOMMENDATION IS 4385 02:53:25,928 --> 02:53:28,931 REALLY ABOUT THE REVIEW PROCESS. 4386 02:53:28,998 --> 02:53:31,267 AND WE SUGGEST THAT NIAMS EXPAND 4387 02:53:31,334 --> 02:53:34,170 THE SCOPE OF THE AMSC STUDY 4388 02:53:34,237 --> 02:53:37,573 SECTION TO INCLUDE SOME OTHER 4389 02:53:37,640 --> 02:53:41,177 CLINICAL MECHANISMS, CLINICAL 4390 02:53:41,244 --> 02:53:41,744 STUDY MECHANISMS. 4391 02:53:41,811 --> 02:53:44,113 EXAMPLE WOULD BE FOR EXAMPLE 4392 02:53:44,180 --> 02:53:47,216 ORTHOPEDICS STUDIES, LARGE 4393 02:53:47,283 --> 02:53:48,284 OBSERVATIONAL STUDIES WHERE 4394 02:53:48,351 --> 02:53:49,285 OUTCOMES ARE BEING ASSESSED, 4395 02:53:49,352 --> 02:53:52,021 WHETHER THEY ARE GOOD OUTCOMES 4396 02:53:52,088 --> 02:53:54,624 OR BAD OUTCOMES, IDEAL 4397 02:53:54,690 --> 02:53:55,525 OBSERVATIONAL STUDIES TO 4398 02:53:55,591 --> 02:53:59,462 IDENTIFY RISK FACTORS FOR GOOD 4399 02:53:59,529 --> 02:54:01,430 VERSUS BAD OUTCOMES BUT THESE GO 4400 02:54:01,497 --> 02:54:02,899 THROUGH THE CSR AND GET ASSIGNED 4401 02:54:02,965 --> 02:54:06,769 TO A STUDY SECTION THAT THE CSR 4402 02:54:06,836 --> 02:54:08,538 OVERSEES, AND THE EXPERTISE FOR 4403 02:54:08,604 --> 02:54:10,940 THESE TYPES OF STUDIES IS JUST 4404 02:54:11,007 --> 02:54:14,777 NOT THERE IN THE STUDY SECTIONS 4405 02:54:14,844 --> 02:54:16,746 SO WE THOUGHT IT WOULD BE 4406 02:54:16,813 --> 02:54:18,381 REASONABLE TO LOOK AT SOME OF 4407 02:54:18,447 --> 02:54:22,218 THESE AND CREATE A MECHANISM TO 4408 02:54:22,285 --> 02:54:24,287 BRING OBSERVATION STUDIES OR 4409 02:54:24,353 --> 02:54:25,822 MECHANISMS INTO THE PURVIEW OF 4410 02:54:25,888 --> 02:54:27,123 THE AMSC. 4411 02:54:27,190 --> 02:54:31,294 A SECOND RECOMMENDATION TO 4412 02:54:31,360 --> 02:54:33,162 DEFINE AND FURTHER EXPAND 4413 02:54:33,229 --> 02:54:34,797 PROGRAM STAFF ROLES IN CLINICAL 4414 02:54:34,864 --> 02:54:38,334 TRIAL OVERSIGHT, THIS WILL OCCUR 4415 02:54:38,401 --> 02:54:41,704 IN THE UG3/UH3 PROCESS BECAUSE 4416 02:54:41,771 --> 02:54:45,775 THERE'S CLOSER INVOLVEMENT FROM 4417 02:54:45,842 --> 02:54:46,642 PROGRAM STAFF. 4418 02:54:46,709 --> 02:54:49,078 BUT TWO VERY MAJOR 4419 02:54:49,145 --> 02:54:50,913 RECOMMENDATIONS UNDER THIS POINT 4420 02:54:50,980 --> 02:54:51,781 ARE, ONE, ESTABLISH SUBSPECIAL 4421 02:54:51,848 --> 02:54:53,816 SHY TEAMS OF PROGRAM DIRECTORS 4422 02:54:53,883 --> 02:54:56,285 TO OVERSEE TRIALS BASED ON TRIAL 4423 02:54:56,352 --> 02:54:58,154 TYPE, FOR EXAMPLE COULD BE A 4424 02:54:58,221 --> 02:55:01,624 GROUP OF PROGRAM STAFF THAT 4425 02:55:01,691 --> 02:55:03,492 SPECIALIZE IN DRUG INTERVENTION 4426 02:55:03,559 --> 02:55:04,427 TRIALS. 4427 02:55:04,493 --> 02:55:05,261 ANOTHER ONE ON SURGICAL 4428 02:55:05,328 --> 02:55:08,097 INTERVENTION TRIALS. 4429 02:55:08,164 --> 02:55:09,065 A THIRD ON BEHAVIORAL 4430 02:55:09,131 --> 02:55:11,467 INTERVENTION TRIALS. 4431 02:55:11,534 --> 02:55:13,569 AND THOSE SPECIALTY GROUPS 4432 02:55:13,636 --> 02:55:15,204 COULD -- THAT EXPERTISE WOULD GO 4433 02:55:15,271 --> 02:55:16,839 ACROSS ALL DISEASE AREAS. 4434 02:55:16,906 --> 02:55:18,875 A SECOND REALLY IMPORTANT ONE IS 4435 02:55:18,941 --> 02:55:25,181 TO ADD MORE M.D.s TO THE 4436 02:55:25,248 --> 02:55:26,482 PROGRAM DIRECTOR STAFFING POOL. 4437 02:55:26,549 --> 02:55:28,751 I KNOW IT'S BEEN A CHALLENGE AND 4438 02:55:28,818 --> 02:55:30,686 WE FULLY RESPECT ALL THE 4439 02:55:30,753 --> 02:55:31,988 PhDs IN THE PROGRAM STAFF, 4440 02:55:32,054 --> 02:55:35,625 HOW HELPFUL THEY ARE IN OUR 4441 02:55:35,691 --> 02:55:37,660 CLINICAL TRIALS PROCESSES. 4442 02:55:37,727 --> 02:55:39,929 BUT THEY WERE IDENTIFIED TO BE 4443 02:55:39,996 --> 02:55:42,131 GAPS IN THE CLINICAL KNOWLEDGE 4444 02:55:42,198 --> 02:55:43,666 AND BACKGROUND AND EVEN COMFORT 4445 02:55:43,733 --> 02:55:45,534 WITH THAT AMONGST SOME OF THE 4446 02:55:45,601 --> 02:55:46,869 PhD staff. 4447 02:55:46,936 --> 02:55:53,509 SO ADDING SOME M.D.s WOULD BE 4448 02:55:53,576 --> 02:55:53,809 BENEFICIAL. 4449 02:55:53,876 --> 02:55:54,543 A THIRD RECOMMENDATION TO 4450 02:55:54,610 --> 02:56:02,051 EVALUATE AND IDENTIFY THE MOST 4451 02:56:02,118 --> 02:56:03,786 IMPACTFUL TRIAL DESIGNS FROM THE 4452 02:56:03,853 --> 02:56:12,094 INFORMATIONAL WEBSITE. 4453 02:56:12,161 --> 02:56:12,962 FOURTHLY PROVIDE EDUCATIONAL 4454 02:56:13,029 --> 02:56:17,900 RESOURCES FOR FDA REGULATED 4455 02:56:17,967 --> 02:56:20,303 STUDIES, THAT ARE THE RULES AND 4456 02:56:20,369 --> 02:56:22,638 REGS FOR EXEMPT PROTOCOLS FROM 4457 02:56:22,705 --> 02:56:24,006 FDA REGULATION, FOR EXAMPLE. 4458 02:56:24,073 --> 02:56:27,109 A LOT HAS BEEN DEVELOPED FOR THE 4459 02:56:27,176 --> 02:56:31,781 HEAL INITIATIVE, THAT COULD BE 4460 02:56:31,847 --> 02:56:36,619 TRANSPORTED INTO THE NIAMS 4461 02:56:36,686 --> 02:56:37,553 PORTFOLIO FOR INVESTIGATORS. 4462 02:56:37,620 --> 02:56:38,587 ALL RIGHT. 4463 02:56:38,654 --> 02:56:40,990 MOVING ON, THE NEXT TWO 4464 02:56:41,057 --> 02:56:43,426 QUESTIONS HAVE TO DO WITH THE 4465 02:56:43,492 --> 02:56:44,961 TRIAL BUDGETS, WHAT IS 4466 02:56:45,027 --> 02:56:47,129 APPROPRIATE BUDGET CEILING AND 4467 02:56:47,196 --> 02:56:48,130 SHOULD NIAMS SUPPORT FEWER 4468 02:56:48,197 --> 02:56:49,332 TRIALS WITH LARGER BUDGETS OR 4469 02:56:49,398 --> 02:56:51,934 CONTINUE TO SUPPORT A BROADER 4470 02:56:52,001 --> 02:56:54,236 MIX OF TRIALS. 4471 02:56:54,303 --> 02:56:56,672 SO WE ALL UNANIMOUSLY AGREED 4472 02:56:56,739 --> 02:56:58,407 NIAMS SHOULD CONTINUE TO SUPPORT 4473 02:56:58,474 --> 02:56:59,842 A BROAD MIX OF CLINICAL TRIAL 4474 02:56:59,909 --> 02:57:01,043 MECHANISMS INCLUDING RANGE OF 4475 02:57:01,110 --> 02:57:04,547 BUDGETS AND RANGE OF TRIAL 4476 02:57:04,613 --> 02:57:05,881 DURATIONS. 4477 02:57:05,948 --> 02:57:07,616 BUT WE DID FEEL, BULLET POINT 4478 02:57:07,683 --> 02:57:09,685 NUMBER 2, WE SHOULD CONSIDER 4479 02:57:09,752 --> 02:57:10,686 REISSUING A FUNDING OPPORTUNITY 4480 02:57:10,753 --> 02:57:11,620 FOR CLINICAL TRIAL PLANNING 4481 02:57:11,687 --> 02:57:14,423 GRANT THAT FOCUSES ON AN EARLIER 4482 02:57:14,490 --> 02:57:15,291 STAGE THAN UG3. 4483 02:57:15,358 --> 02:57:19,428 NOW THAT WE HAVE THE UG3 AND 4484 02:57:19,495 --> 02:57:24,367 UH3, UG3 IS A PLANNING MECHANISM 4485 02:57:24,433 --> 02:57:27,436 THAT'S VERY PROXIMATE TO 4486 02:57:27,503 --> 02:57:29,071 INITIATION OF TRIAL, ALMOST 4487 02:57:29,138 --> 02:57:30,306 SHOVEL READY, NEEDING TO DO A 4488 02:57:30,373 --> 02:57:32,942 FEW CRITICAL THINGS DURING THAT 4489 02:57:33,009 --> 02:57:34,010 PLANNING PHASE AND THEN 4490 02:57:34,076 --> 02:57:36,078 SEAMLESSLY WILL GO IMMEDIATELY 4491 02:57:36,145 --> 02:57:37,847 INTO THE CLINICAL TRIAL. 4492 02:57:37,913 --> 02:57:41,684 BUT WE NEED A MECHANISM WHERE 4493 02:57:41,751 --> 02:57:44,553 THE CLINICAL TRIAL ISN'T QUITE 4494 02:57:44,620 --> 02:57:47,490 SO MATURE, THERE NEEDS TO BE AN 4495 02:57:47,556 --> 02:57:53,062 EXPERT GROUP ASSEMBLED TO WORK 4496 02:57:53,129 --> 02:57:54,930 OUT PROTOCOL DEVELOPMENT, 4497 02:57:54,997 --> 02:57:55,664 INCLUSION/EXTRUSION CRITERIA, 4498 02:57:55,731 --> 02:57:56,699 IDENTIFY SIDES THAT COULD 4499 02:57:56,766 --> 02:57:58,000 PARTICIPATE, THINGS LIKE THAT. 4500 02:57:58,067 --> 02:57:59,869 WE THINK THAT WOULD BE HELPFUL 4501 02:57:59,935 --> 02:58:01,270 AS EARLIER PHASE PLANNING GRANT 4502 02:58:01,337 --> 02:58:03,672 AND THEN IT SHOULD, AGAIN, 4503 02:58:03,739 --> 02:58:07,977 INCLUDE IMPACT AS A REVIEW 4504 02:58:08,044 --> 02:58:08,244 CRITERION. 4505 02:58:08,310 --> 02:58:09,011 SO THIS POTENTIAL CLINICAL TRIAL 4506 02:58:09,078 --> 02:58:11,714 IS GOING TO BE DISCUSSED, IS IT 4507 02:58:11,781 --> 02:58:17,386 WORTH DOING, IS IT GOING TO BE 4508 02:58:17,453 --> 02:58:18,788 IMPACTFUL. 4509 02:58:18,854 --> 02:58:21,857 THE COMMITTEE FELT THAT 4510 02:58:21,924 --> 02:58:25,861 RECOMMENDING A BUDGET CEILING, 4511 02:58:25,928 --> 02:58:27,930 BUDGET THRESHOLD IS NOT IN OUR 4512 02:58:27,997 --> 02:58:31,600 PURVIEW BECAUSE THERE ARE 4513 02:58:31,667 --> 02:58:32,935 COMPLICATED TRADEOFFS, HAVE YOU 4514 02:58:33,002 --> 02:58:33,569 INCREASE THIS YOU HAVE TO 4515 02:58:33,636 --> 02:58:36,739 DECREASE SOMETHING ELSE AND 4516 02:58:36,806 --> 02:58:42,111 DON'T HAVE AN IN-DEPTH 4517 02:58:42,178 --> 02:58:44,713 KNOWLEDGE, SO WE DID DEFER ON 4518 02:58:44,780 --> 02:58:45,047 THAT QUESTION. 4519 02:58:45,114 --> 02:58:47,116 THE ADDITIONAL QUESTIONS THAT WE 4520 02:58:47,183 --> 02:58:49,118 AS A CLINICAL TRIALS WORKING 4521 02:58:49,185 --> 02:58:51,087 GROUP ADDED ARE 2, 3, 4, OUR 4522 02:58:51,153 --> 02:58:52,488 LAST ONES. 4523 02:58:52,555 --> 02:58:55,124 SO SHOULD NIAMS EXPLORE 4524 02:58:55,191 --> 02:58:55,925 ESTABLISHING OR FACILITATING 4525 02:58:55,991 --> 02:58:57,226 CLINICAL TRIALS NETWORK? 4526 02:58:57,293 --> 02:58:59,728 HOW CAN NIAMS SUPPORT DIVERSITY 4527 02:58:59,795 --> 02:59:01,797 IN ENROLLMENT AND HOW CAN NIAMS 4528 02:59:01,864 --> 02:59:03,099 ENGAGE THOSE WITH LIVED 4529 02:59:03,165 --> 02:59:09,071 EXPERIENCES IN THE CLINICAL 4530 02:59:09,138 --> 02:59:09,872 TRIALS PROCESSES? 4531 02:59:09,939 --> 02:59:16,112 SO, WE SPEND A LOT OF TIME 4532 02:59:16,178 --> 02:59:17,480 THINKING WHETHER NIAMS SHOULD 4533 02:59:17,546 --> 02:59:19,348 FACILITATE OR ESTABLISH A 4534 02:59:19,415 --> 02:59:19,648 NETWORK. 4535 02:59:19,715 --> 02:59:20,749 THE RATIONALE IS RIGHT NOW EVERY 4536 02:59:20,816 --> 02:59:22,618 TIME A CLINICAL TRIAL IS FUNDED 4537 02:59:22,685 --> 02:59:25,688 BY NIAMS THAT INVESTIGATOR HAS 4538 02:59:25,754 --> 02:59:28,190 TO REINVENT THE WHEEL FOR EVERY 4539 02:59:28,257 --> 02:59:30,726 PROCESS, AND IT'S INEFFICIENT 4540 02:59:30,793 --> 02:59:32,061 AND COSTLY. 4541 02:59:32,128 --> 02:59:33,896 AND FOR FIRST-TIME CLINICAL 4542 02:59:33,963 --> 02:59:35,097 TRIAL APPLICANTS, DE NOVO 4543 02:59:35,164 --> 02:59:36,632 DEVELOPMENT OF ALL THESE 4544 02:59:36,699 --> 02:59:37,633 NECESSARY TRIAL ELEMENTS AND 4545 02:59:37,700 --> 02:59:39,502 INFRASTRUCTURE ELEMENTS CAN BE 4546 02:59:39,568 --> 02:59:41,237 VERY, VERY OVERWHELMING. 4547 02:59:41,303 --> 02:59:43,439 AND IT MAY DIMINISH THEIR 4548 02:59:43,506 --> 02:59:45,074 ENTHUSIASM TO PURSUE WHAT MIGHT 4549 02:59:45,141 --> 02:59:51,180 BE A VERY IMPACTFUL TRIAL 4550 02:59:51,247 --> 02:59:51,480 APPLICATION. 4551 02:59:51,547 --> 02:59:53,382 SO, WE DID RECOGNIZE HOWEVER 4552 02:59:53,449 --> 02:59:54,817 THAT BECAUSE OF THE BROAD 4553 02:59:54,884 --> 02:59:58,754 MISSION AREA OF NIAMS THAT 4554 02:59:58,821 --> 03:00:00,856 COVERS SKIN, ORTHOPEDICS, 4555 03:00:00,923 --> 03:00:01,891 MUSCLE, AND AUTOIMMUNE DISEASE, 4556 03:00:01,957 --> 03:00:04,460 IT IS SO BROAD AND THE BUDGET IS 4557 03:00:04,527 --> 03:00:06,095 SO LIMITED THAT IT WOULD BE 4558 03:00:06,162 --> 03:00:08,197 VIRTUALLY IMPOSSIBLE TO DEVELOP 4559 03:00:08,264 --> 03:00:10,099 A MATURE COMPLETE CLINICAL 4560 03:00:10,166 --> 03:00:11,267 TRIALS NETWORK. 4561 03:00:11,333 --> 03:00:12,801 SO OUR RECOMMENDATION INSTEAD IS 4562 03:00:12,868 --> 03:00:13,569 FOR NIAMS TO CONSIDER WHETHER 4563 03:00:13,636 --> 03:00:15,204 THEY ARE AT LEAST A COMPONENT OR 4564 03:00:15,271 --> 03:00:22,678 TWO OR THREE OF AN EXISTING CTN 4565 03:00:22,745 --> 03:00:23,746 OR CTSI THAT COULD PROVIDE 4566 03:00:23,812 --> 03:00:25,614 ECONOMIES OF SCALE AND EFFORT SO 4567 03:00:25,681 --> 03:00:28,551 TRIALISTS COULD PLUG INTO THAT 4568 03:00:28,617 --> 03:00:31,187 AND NOT HAVE TO GENERATE DE 4569 03:00:31,253 --> 03:00:31,754 NOVO. 4570 03:00:31,820 --> 03:00:33,622 SOME COMPONENTS INCLUDE BUT NOT 4571 03:00:33,689 --> 03:00:36,358 LIMITED TO CENTRALIZED DATA 4572 03:00:36,425 --> 03:00:38,994 COORDINATING CENTERS, DATA 4573 03:00:39,061 --> 03:00:40,596 COLLECTIONS, SUPPORT FOR 4574 03:00:40,663 --> 03:00:41,664 RECRUITMENT, DSMBs WHICH ARE 4575 03:00:41,730 --> 03:00:47,636 ALREADY PROVIDED AND I THINK 4576 03:00:47,703 --> 03:00:48,737 EVERYBODY APPRECIATES, SINGLE 4577 03:00:48,804 --> 03:00:50,372 IRBs, NAVIGATOR NETWORKS, DATA 4578 03:00:50,439 --> 03:00:58,681 SHARING RESOURCES, REGULATORY 4579 03:00:58,747 --> 03:00:59,548 SUPPORT AND CLINICAL TRIAL 4580 03:00:59,615 --> 03:01:01,083 DESIGN, A LOT TO THINK ABOUT. 4581 03:01:01,150 --> 03:01:03,152 NEXT QUESTION HOW CAN NIAMS 4582 03:01:03,219 --> 03:01:05,788 SUPPORT DIVERSITY IN CLINICAL 4583 03:01:05,854 --> 03:01:06,488 TRIAL ENROLLMENT? 4584 03:01:06,555 --> 03:01:08,757 SO ONE SUGGESTION WAS THAT NIAMS 4585 03:01:08,824 --> 03:01:11,393 SHOULD DEVELOP A LIST OF SITES 4586 03:01:11,460 --> 03:01:15,864 THAT HAVE ESTABLISHED EXPERTISE 4587 03:01:15,931 --> 03:01:16,632 AND COMMUNITY ENGAGEMENT AND 4588 03:01:16,699 --> 03:01:18,267 MAKE LISTS AVAILABLE TO 4589 03:01:18,334 --> 03:01:19,134 APPLICANTS OR GRANTEES TO 4590 03:01:19,201 --> 03:01:23,072 PARTNER WITH THOSE SITES. 4591 03:01:23,138 --> 03:01:25,074 FOR EXAMPLE, INVESTIGATOR WHO IS 4592 03:01:25,140 --> 03:01:26,575 DOING A CLINICAL TRIAL PROPOSING 4593 03:01:26,642 --> 03:01:28,210 A CLINICAL TRIAL IN HIS OR HER 4594 03:01:28,277 --> 03:01:30,279 AREA OF THE COUNTRY WHICH 4595 03:01:30,346 --> 03:01:34,350 HAPPENS TO BE 95% CAUCASIAN 4596 03:01:34,416 --> 03:01:35,918 COULD ACCESS THIS LIST, IDENTIFY 4597 03:01:35,985 --> 03:01:39,922 SOME SITES THAT HAVE A TRACK 4598 03:01:39,989 --> 03:01:43,559 RECORD IN ENROLLMENT OF DIVERSE 4599 03:01:43,626 --> 03:01:48,831 POPULATIONS, ASK THEM TO 4600 03:01:48,897 --> 03:01:52,001 PARTICIPATE WITH SUB-AWARDEES, 4601 03:01:52,067 --> 03:01:54,169 THAT WOULD FACILITATE A MORE 4602 03:01:54,236 --> 03:01:55,437 DIVERSE ENROLLMENT. 4603 03:01:55,504 --> 03:01:56,572 SECOND SUGGESTION, NIAMS SHOULD 4604 03:01:56,639 --> 03:01:58,874 OFFER MORE TRAINING TO SROs 4605 03:01:58,941 --> 03:02:00,943 AND REVIEWERS HOW TO EVALUATE 4606 03:02:01,010 --> 03:02:03,846 APPLICATIONS FOR DIVERSITY OF 4607 03:02:03,912 --> 03:02:04,146 ENROLLMENT. 4608 03:02:04,213 --> 03:02:06,982 FOR EXAMPLE, IF AN INVESTIGATOR 4609 03:02:07,049 --> 03:02:08,717 PLANS ON ENROLLING CLINICAL 4610 03:02:08,784 --> 03:02:11,320 TRIAL POPULATION THAT REFLECTS 4611 03:02:11,387 --> 03:02:13,088 THEIR CLINIC OR GEOGRAPHIC 4612 03:02:13,155 --> 03:02:16,158 POPULATION, FOR EXAMPLE, 95% 4613 03:02:16,225 --> 03:02:17,493 CAUCASIAN AGAIN, THEN THERE WILL 4614 03:02:17,559 --> 03:02:20,996 NOT BE DIVERSITY AND THEY SHOULD 4615 03:02:21,063 --> 03:02:22,064 BE -- REVIEWERS AND SROs 4616 03:02:22,131 --> 03:02:26,435 SHOULD HAVE A WAY TO COMMENT ON 4617 03:02:26,502 --> 03:02:32,708 THAT AND SUGGEST SOME 4618 03:02:32,775 --> 03:02:33,042 MODIFICATIONS. 4619 03:02:33,108 --> 03:02:34,443 WAYS NIAMS COULD FACILITATE 4620 03:02:34,510 --> 03:02:36,312 DIVERSITY ENROLLMENT BY SHARING 4621 03:02:36,378 --> 03:02:37,946 OPTIONS, LESSONS LEARNED, BEST 4622 03:02:38,013 --> 03:02:40,349 PRACTICES AGAIN, SHARING 4623 03:02:40,416 --> 03:02:41,583 APPROACHES FROM DIFFERENT 4624 03:02:41,650 --> 03:02:42,985 INSTITUTIONS, APPROACHES TO 4625 03:02:43,052 --> 03:02:44,086 RECRUITMENT OF DIFFERENT 4626 03:02:44,153 --> 03:02:46,188 CULTURES, GUIDE APPLICANTS TO 4627 03:02:46,255 --> 03:02:47,956 RESOURCE AND PRACTICES. 4628 03:02:48,023 --> 03:02:58,467 AND THEN IMPORTANTLY OFFER 4629 03:02:59,535 --> 03:03:07,076 GUIDANCE ON BUDGETING. 4630 03:03:07,142 --> 03:03:09,578 WE FELT NIAMS SHOULD VERY 4631 03:03:09,645 --> 03:03:10,813 OVERTLY ENCOURAGE THE ENGAGEMENT 4632 03:03:10,879 --> 03:03:11,780 OF INDIVIDUALS WITH LIVED 4633 03:03:11,847 --> 03:03:13,415 EXPERIENCES WITH A DISEASE FROM 4634 03:03:13,482 --> 03:03:15,884 THE VERY START OF CLINICAL 4635 03:03:15,951 --> 03:03:18,387 TRIALS WITHIN THE DESIGN PHASE 4636 03:03:18,454 --> 03:03:20,556 TO IMPLEMENTATION PHASE AND THIS 4637 03:03:20,622 --> 03:03:21,757 DISSEMINATION PHASE. 4638 03:03:21,824 --> 03:03:24,293 THIS ENGAGEMENT COULD EXTEND TO 4639 03:03:24,360 --> 03:03:25,494 CURRENT PARTICIPANTS IN ACTIVE 4640 03:03:25,561 --> 03:03:26,495 CLINICAL TRIALS, AND THEIR 4641 03:03:26,562 --> 03:03:28,731 INVOLVEMENT COULD BE AT ANY 4642 03:03:28,797 --> 03:03:32,701 NUMBER OF LEVELS, FOR EXAMPLE 4643 03:03:32,768 --> 03:03:37,306 ADVISING ON RECRUITMENT, 4644 03:03:37,373 --> 03:03:40,709 RETENTION AND AWARENESS, SUMMARY 4645 03:03:40,776 --> 03:03:43,979 EVENTS REPORTED, RETURNING 4646 03:03:44,046 --> 03:03:45,280 INDIVIDUAL RESULTS IF 4647 03:03:45,347 --> 03:03:47,249 APPROPRIATE, ENGAGE ON UPDATES 4648 03:03:47,316 --> 03:03:48,784 OF TRIAL PROGRESS. 4649 03:03:48,851 --> 03:03:51,620 SO THAT IS THE END OF THE 4650 03:03:51,687 --> 03:03:53,055 RECOMMENDATIONS. 4651 03:03:53,122 --> 03:03:57,760 I JUST WANTED TO REVIEW -- BOB 4652 03:03:57,826 --> 03:03:58,694 SUMMARIZED, OUR TIMELINE WAS 12 4653 03:03:58,761 --> 03:04:02,598 MONTHS, EXTENDED TO 18 MONTHS 4654 03:04:02,664 --> 03:04:04,900 BECAUSE OF ALL THE QUESTIONS AND 4655 03:04:04,967 --> 03:04:06,969 ISSUES THAT WE NEEDED TO 4656 03:04:07,035 --> 03:04:07,469 DISCUSS. 4657 03:04:07,536 --> 03:04:13,542 WE DID A VERY DEEP DIVE INTO THE 4658 03:04:13,609 --> 03:04:14,943 NIAMS PORTFOLIO WITH SHANARD, 4659 03:04:15,010 --> 03:04:16,612 BOB, CHUCK, LOOKED AT CLINICAL 4660 03:04:16,678 --> 03:04:18,480 TRIAL MECHANISMS THAT NIAMS HAS, 4661 03:04:18,547 --> 03:04:21,316 THE NUMBER OF APPLICATIONS PER 4662 03:04:21,383 --> 03:04:22,751 YEAR IT RECEIVED, PERCENT 4663 03:04:22,818 --> 03:04:24,820 FUNDED, TRENDS OVER YEARS, ALL 4664 03:04:24,887 --> 03:04:26,989 OF THESE ASPECTS, THE NUMBER OF 4665 03:04:27,055 --> 03:04:30,492 TRIALS THAT PUBLISH RESULTS AND 4666 03:04:30,559 --> 03:04:32,928 HOW IMPACTFUL THEY WERE. 4667 03:04:32,995 --> 03:04:35,764 WE HAD PRESENTATIONS BY AND 4668 03:04:35,831 --> 03:04:37,299 DISCUSSIONS WITH MULTIPLE NIH 4669 03:04:37,366 --> 03:04:39,802 INSTITUTES ABOUT THEIR OWN 4670 03:04:39,868 --> 03:04:40,436 CLINICAL TRIAL MECHANISMS, WHAT 4671 03:04:40,502 --> 03:04:41,770 WORKED, WHAT DIDN'T WORK. 4672 03:04:41,837 --> 03:04:43,639 WE TALKED ABOUT CLINICAL TRIALS 4673 03:04:43,705 --> 03:04:45,474 NETWORK, WHAT WORKED, WHAT 4674 03:04:45,541 --> 03:04:47,342 DIDN'T WORK. 4675 03:04:47,409 --> 03:04:49,878 THAT WAS VERY HELPFUL IN 4676 03:04:49,945 --> 03:04:51,079 INFORMING OUR OWN 4677 03:04:51,146 --> 03:04:51,447 RECOMMENDATIONS. 4678 03:04:51,513 --> 03:04:53,382 THEN AMONGST OURSELVES WE HAD 4679 03:04:53,449 --> 03:04:54,883 EXTENSIVE DISCUSSIONS AND 4680 03:04:54,950 --> 03:04:55,784 DEVELOPED OUR CURRENT 4681 03:04:55,851 --> 03:04:56,752 RECOMMENDATIONS, WE HAD A 4682 03:04:56,819 --> 03:04:58,420 PROCESS TO GET TO CONSENSUS AND 4683 03:04:58,487 --> 03:05:03,358 I CAN TELL YOU ALL OF THE 4684 03:05:03,425 --> 03:05:04,760 RECOMMENDATIONS TODAY WERE 4685 03:05:04,827 --> 03:05:06,862 AGREED UPON BY ALL OF THOSE, SO 4686 03:05:06,929 --> 03:05:08,063 MEMBERS OF THE COMMITTEE. 4687 03:05:08,130 --> 03:05:10,999 LASTLY I WOULD BE REMISS IF I 4688 03:05:11,066 --> 03:05:13,969 DIDN'T SHOUT OUT TO ALL OF OUR 4689 03:05:14,036 --> 03:05:15,838 NIAMS COLLEAGUES AND 4690 03:05:15,904 --> 03:05:19,541 FACILITATORS WHO ARE LISTED AS 4691 03:05:19,608 --> 03:05:21,076 WELL. 4692 03:05:21,143 --> 03:05:29,718 BOB AND CHUCK AND DEIDRE. 4693 03:05:29,785 --> 03:05:34,323 THIS IS A LIST OF EVERYONE WHO 4694 03:05:34,389 --> 03:05:35,057 PARTICIPATED. 4695 03:05:35,123 --> 03:05:41,663 STUART GOODMAN WAS CO-CHAIR OF 4696 03:05:41,730 --> 03:05:43,999 THIS PROCESS, AND COULDN'T BE 4697 03:05:44,066 --> 03:05:54,276 HERE TODAY. 4698 03:05:55,077 --> 03:05:56,144 REPRESENTING ORTHOPEDICS, 4699 03:05:56,211 --> 03:06:02,284 PATIENT ADVOCACY, RHEUMATOLOGY, 4700 03:06:02,351 --> 03:06:04,453 DETERMINE NOTHING, MUSCLE, BONE, 4701 03:06:04,520 --> 03:06:05,888 AND PAIN AND BEHAVIORAL, ALL THE 4702 03:06:05,954 --> 03:06:08,190 MISSION AREAS WERE COVERED IN 4703 03:06:08,257 --> 03:06:08,957 OUR GROUP. 4704 03:06:09,024 --> 03:06:12,561 LASTLY THANKS TO ALL OF THE 4705 03:06:12,628 --> 03:06:14,429 NIAMS FACILITATORS AND STAFF 4706 03:06:14,496 --> 03:06:18,800 SUPPORT, ESPECIALLY BOB AND 4707 03:06:18,867 --> 03:06:20,903 CHUCK, MORE RECENTLY DANDRE, 4708 03:06:20,969 --> 03:06:23,505 DARREN, AND TOM, OUR BOY FRIDAY, 4709 03:06:23,572 --> 03:06:24,940 WHO DID THE MINUTES, 4710 03:06:25,007 --> 03:06:31,380 ORGANIZATIONS OF THE MEETINGS 4711 03:06:31,446 --> 03:06:32,581 SCRIBE AND SLIDE GENERATOR. 4712 03:06:32,648 --> 03:06:34,149 THAT IS THE END. 4713 03:06:34,216 --> 03:06:35,217 I WILL STOP SHARING. 4714 03:06:35,284 --> 03:06:41,657 UNLESS YOU WANT ME TO LEAVE THE 4715 03:06:41,723 --> 03:06:42,090 SLIDES UP. 4716 03:06:42,157 --> 03:06:43,525 I'LL STOP SHARING. 4717 03:06:43,592 --> 03:06:49,097 >> SO, JOAN, LET ME FIRST START 4718 03:06:49,164 --> 03:06:50,699 OFF HERE AND PROFUSELY THANK YOU 4719 03:06:50,766 --> 03:06:53,602 AND STUART AND ALL OF YOUR 4720 03:06:53,669 --> 03:06:57,539 COLLEAGUES, ALL OF THE STAFF. 4721 03:06:57,606 --> 03:06:59,074 WHAT AN INCREDIBLE RESOURCE FOR 4722 03:06:59,141 --> 03:06:59,474 US. 4723 03:06:59,541 --> 03:07:00,475 THE TIME YOU TOOK. 4724 03:07:00,542 --> 03:07:02,678 I HAD ASKED SOMEONE TO CALCULATE 4725 03:07:02,744 --> 03:07:04,813 ALL THE OURS, COLLECTIVE HOURS, 4726 03:07:04,880 --> 03:07:06,081 I DON'T KNOW, THOUSANDS. 4727 03:07:06,148 --> 03:07:07,282 BUT WE'RE SO GRATEFUL. 4728 03:07:07,349 --> 03:07:08,617 EACH ONE OF THESE QUESTIONS IS 4729 03:07:08,684 --> 03:07:10,252 SO IMPORTANT. 4730 03:07:10,319 --> 03:07:14,523 AND YOU TOOK SUCH A THOUGHTFUL 4731 03:07:14,590 --> 03:07:15,924 COMPREHENSIVE APPROACH. 4732 03:07:15,991 --> 03:07:17,059 WE'RE GOING TO SPEND A LOT OF 4733 03:07:17,125 --> 03:07:18,560 TIME GOING THROUGH ALL OF THESE 4734 03:07:18,627 --> 03:07:20,162 AND FIGURING OUT HOW TO 4735 03:07:20,228 --> 03:07:22,030 INCORPORATE THEM, HOW TO TAKE 4736 03:07:22,097 --> 03:07:23,065 YOUR RECOMMENDATIONS, BUT I 4737 03:07:23,131 --> 03:07:26,435 WANTED TO THANK YOU AND WE HAVE 4738 03:07:26,501 --> 03:07:27,769 OTHERS HERE, MARIA WHO WE'LL 4739 03:07:27,836 --> 03:07:29,938 HEAR FROM IN A MINUTE, BUT 4740 03:07:30,005 --> 03:07:30,439 REALLY GRATEFUL. 4741 03:07:30,505 --> 03:07:31,840 I CAN'T SAY THAT ENOUGH. 4742 03:07:31,907 --> 03:07:34,910 SUCH AN IMPORTANT TOPIC FOR US. 4743 03:07:34,977 --> 03:07:36,845 ON THAT NOTE I'LL TURN IT TO BOB 4744 03:07:36,912 --> 03:07:38,513 TO GO FROM HERE. 4745 03:07:38,580 --> 03:07:41,249 >> I WANT TO GIVE MARIA AND JOSH 4746 03:07:41,316 --> 03:07:44,086 JACOBS, A FORMER COUNCIL MEMBER, 4747 03:07:44,152 --> 03:07:46,054 AS THEY SAY AROUND HERE ONCE A 4748 03:07:46,121 --> 03:07:48,256 COUNCIL MEMBER ALWAYS A COUNCIL 4749 03:07:48,323 --> 03:07:48,557 MEMBER. 4750 03:07:48,624 --> 03:07:55,797 MARIA, JOSH, WHAT WOULD YOU LIKE 4751 03:07:55,864 --> 03:07:56,131 TO ADD? 4752 03:07:56,198 --> 03:07:57,099 >> THANK YOU VERY MUCH. 4753 03:07:57,165 --> 03:08:02,671 IT WAS A PLEASURE WORKING WITH 4754 03:08:02,738 --> 03:08:07,409 JOAN AND STUART, AND GOING IN 4755 03:08:07,476 --> 03:08:09,478 SUCH DEEP EXPLORATION, WHAT WAS 4756 03:08:09,544 --> 03:08:11,580 AVAILABLE, WHAT COULD BE DONE 4757 03:08:11,647 --> 03:08:12,881 HAS BEEN AN ENLIGHTENING 4758 03:08:12,948 --> 03:08:13,215 PERSPECTIVE. 4759 03:08:13,281 --> 03:08:15,717 I KNOW YOU'RE ALL CONSTRAINED BY 4760 03:08:15,784 --> 03:08:17,686 POWERS ABOVE YOU, WHAT YOU CAN 4761 03:08:17,753 --> 03:08:20,422 DO, AS FAR AS CHANGING THE 4762 03:08:20,489 --> 03:08:22,057 PORTFOLIO, BUT I HOPE THAT SOME 4763 03:08:22,124 --> 03:08:25,761 OF THESE RECOMMENDATIONS CAN BE 4764 03:08:25,827 --> 03:08:26,094 MOVED FORWARD. 4765 03:08:26,161 --> 03:08:29,064 >> WELL, WHAT I WOULD ADD IS IT 4766 03:08:29,131 --> 03:08:31,600 WAS A VERY EFFECTIVE PROCESS. 4767 03:08:31,667 --> 03:08:34,870 I WAS VERY IMPRESSED WITH THE 4768 03:08:34,936 --> 03:08:36,004 GROUP ASSEMBLED, TASK FORCE, 4769 03:08:36,071 --> 03:08:37,839 CONCERNING BREADTH AND DEPTH OF 4770 03:08:37,906 --> 03:08:39,675 EXPERTISE IN THIS AREA. 4771 03:08:39,741 --> 03:08:43,178 I WOULD JUST STRESS AS JOAN SAID 4772 03:08:43,245 --> 03:08:45,614 THAT WE'RE -- WE STRESSED 4773 03:08:45,681 --> 03:08:47,916 IMPORTANCE OF CLINICAL TRIAL 4774 03:08:47,983 --> 03:08:50,986 PORTFOLIO OF NIAMS, IT HAS 4775 03:08:51,053 --> 03:08:53,088 POTENTIAL TO REALLY ADVANCE OUR 4776 03:08:53,155 --> 03:08:54,723 VARIOUS FIELDS. 4777 03:08:54,790 --> 03:08:57,359 FINALLY, JOAN WAS CORRECT; 4778 03:08:57,426 --> 03:08:58,093 DESPITE SOME DIFFERENT 4779 03:08:58,160 --> 03:09:00,395 PERSPECTIVES THAT WE ALL BROUGHT 4780 03:09:00,462 --> 03:09:02,731 TO THE TABLE, WE LEFT WITH OUR 4781 03:09:02,798 --> 03:09:06,234 LAST MEETING ALL WITH CONSENSUS 4782 03:09:06,301 --> 03:09:07,736 RECOMMENDATIONS SO I THINK THAT 4783 03:09:07,803 --> 03:09:09,738 THE PROCESS WAS VERY EFFECTIVE, 4784 03:09:09,805 --> 03:09:13,642 HATS OFF TO JOAN AND STUART, AND 4785 03:09:13,709 --> 03:09:16,178 THE NIH LEADERSHIP FOR 4786 03:09:16,244 --> 03:09:23,652 CONDUCTING A VERY EFFECTIVE 4787 03:09:23,719 --> 03:09:24,820 PROCESS. 4788 03:09:24,886 --> 03:09:31,593 >> KURT, DID YOU WANT TO 4789 03:09:31,660 --> 03:09:31,827 COMMENT? 4790 03:09:31,893 --> 03:09:33,595 >> HE'S THE SHY ONE. 4791 03:09:33,662 --> 03:09:35,330 >> NO, NO, I JUST JOINED RIGHT 4792 03:09:35,397 --> 03:09:37,532 NOW, I JUST POPPED IN. 4793 03:09:37,599 --> 03:09:40,702 I HEARD JOSH'S COMMENTS, 4794 03:09:40,769 --> 03:09:43,071 CERTAINLY ECHO IT. 4795 03:09:43,138 --> 03:09:49,044 IT WAS REALLY A LOT OF FUN AND 4796 03:09:49,111 --> 03:09:50,245 WORK, AN INFORMATIVE THING TO BE 4797 03:09:50,312 --> 03:09:54,616 ON THE WORKING GROUP AND TRY TO 4798 03:09:54,683 --> 03:09:55,217 CREATE RECOMMENDATIONS WORKING 4799 03:09:55,283 --> 03:09:57,452 WITH THE WHOLE TEAM AND BOB 4800 03:09:57,519 --> 03:09:57,886 CARTER. 4801 03:09:57,953 --> 03:09:59,354 >> TIFFANY WAS ON FOR THE 4802 03:09:59,421 --> 03:10:01,523 PATIENT ENGAGEMENT THIS MORNING, 4803 03:10:01,590 --> 03:10:02,057 WHICH IS INTERESTING. 4804 03:10:02,124 --> 03:10:04,526 I DON'T KNOW IF SHE PURPOSELY 4805 03:10:04,593 --> 03:10:06,328 JOINED THAT PART OF THE SESSION. 4806 03:10:06,394 --> 03:10:09,631 ALSO PETER WAS ALSO ON. 4807 03:10:09,698 --> 03:10:10,699 ALL RIGHT. 4808 03:10:10,766 --> 03:10:17,072 WE'LL OPEN UP THE FLOOR. 4809 03:10:17,139 --> 03:10:20,776 WE HAVE PLENTY OF TIME. 4810 03:10:20,842 --> 03:10:21,243 COMMENTS? 4811 03:10:21,309 --> 03:10:22,978 THINGS WE SHOULDN'T DO? 4812 03:10:23,044 --> 03:10:24,379 >> I'LL SAY SOMETHING ELSE. 4813 03:10:24,446 --> 03:10:26,248 I REALLY APPRECIATED THE FACT 4814 03:10:26,314 --> 03:10:28,550 THAT THIS WASN'T JUST PIE IN THE 4815 03:10:28,617 --> 03:10:30,952 SKY BUT YOU RECOGNIZED SOME OF 4816 03:10:31,019 --> 03:10:34,890 THE CONSTRAINTS WE HAVE AND THAT 4817 03:10:34,956 --> 03:10:36,224 OBVIOUSLY INFLUENCED YOUR 4818 03:10:36,291 --> 03:10:36,858 RECOMMENDATIONS. 4819 03:10:36,925 --> 03:10:39,528 AND THAT PUTS US SO MUCH FARTHER 4820 03:10:39,594 --> 03:10:41,463 TO BEING ABLE TO WORK WITH YOUR 4821 03:10:41,530 --> 03:10:42,364 RECOMMENDATIONS. 4822 03:10:42,430 --> 03:10:44,099 SO THANK YOU FOR INCLUDING THAT 4823 03:10:44,166 --> 03:10:45,967 REALLY IMPORTANT CONTEXT AS 4824 03:10:46,034 --> 03:10:53,642 WELL. 4825 03:10:53,708 --> 03:10:54,509 >> TWO QUESTIONS. 4826 03:10:54,576 --> 03:10:57,078 ONE IS, AND FOR COMMITTEE 4827 03:10:57,145 --> 03:10:58,680 MEMBERS, WHERE DO THESE 4828 03:10:58,747 --> 03:11:00,315 RECOMMENDATIONS STAND RELATIVE 4829 03:11:00,382 --> 03:11:03,285 TO WHAT OTHER INSTITUTES ARE 4830 03:11:03,351 --> 03:11:03,718 DOING? 4831 03:11:03,785 --> 03:11:06,221 IS THIS THE BEST OF THE BEST? 4832 03:11:06,288 --> 03:11:09,724 OR SOMEWHERE IN THE MIDDLE OR 4833 03:11:09,791 --> 03:11:10,692 BABY STEPS? 4834 03:11:10,759 --> 03:11:12,127 THAT'S MY FIRST QUESTION. 4835 03:11:12,194 --> 03:11:13,862 AND THE SECOND ONE IS RELATED TO 4836 03:11:13,929 --> 03:11:17,265 THAT IN TERMS OF WHAT'S THE NEXT 4837 03:11:17,332 --> 03:11:21,069 STEP IN TERMS OF FEASIBILITY AND 4838 03:11:21,136 --> 03:11:22,971 IMPLEMENTATION, PHASING, HOW DO 4839 03:11:23,038 --> 03:11:24,606 WE ENVISION THAT? 4840 03:11:24,673 --> 03:11:28,109 >> I CAN ANSWER THE FIRST ONE. 4841 03:11:28,176 --> 03:11:31,613 I'LL DEFER TO THE NIAMS FOLKS 4842 03:11:31,680 --> 03:11:32,581 FOR THE SECOND. 4843 03:11:32,647 --> 03:11:34,216 WHERE DO RECOMMENDATIONS STANDS 4844 03:11:34,282 --> 03:11:35,984 WITH OTHER INSTITUTES, YEAH, WE 4845 03:11:36,051 --> 03:11:37,185 HAVE SUCH A SMALL BUDGET 4846 03:11:37,252 --> 03:11:39,154 COMPARED TO THE OTHER INSTITUTES 4847 03:11:39,221 --> 03:11:45,961 THAT WE TALKED TO, FOR THE MOST 4848 03:11:46,027 --> 03:11:46,361 PART. 4849 03:11:46,428 --> 03:11:51,199 SO EVEN SO, WE HEARD ABOUT THEIR 4850 03:11:51,266 --> 03:11:53,168 UG3/UH3 SUCCESSES, HOW MUCH MORE 4851 03:11:53,235 --> 03:11:54,903 STREAMLINED IT WAS AND HOW MUCH 4852 03:11:54,970 --> 03:11:57,539 INVOLVEMENT THE NIAMS STAFF 4853 03:11:57,606 --> 03:11:58,840 WOULD HAVE, AND SO WE ARE RIGHT 4854 03:11:58,907 --> 03:12:03,111 IN LINE WITH THEM BY TAKING 4855 03:12:03,178 --> 03:12:04,846 THEIR -- WE ADOPTED THEIR 4856 03:12:04,913 --> 03:12:06,715 METHODS FOR THE BIG TRIALS. 4857 03:12:06,781 --> 03:12:08,049 AND SO I THINK WE'RE RIGHT IN 4858 03:12:08,116 --> 03:12:10,552 LINE WITH A LOT OF THE 4859 03:12:10,619 --> 03:12:12,287 INSTITUTES IN THAT REGARD. 4860 03:12:12,354 --> 03:12:14,856 AS FAR AS, YOU KNOW, BUDGETING 4861 03:12:14,923 --> 03:12:16,258 THOUGH THAT LIMITS WHAT WE CAN 4862 03:12:16,324 --> 03:12:18,560 DO IN THE CLINICAL TRIALS 4863 03:12:18,627 --> 03:12:19,895 NETWORK END OF THINGS I THINK, 4864 03:12:19,961 --> 03:12:21,296 AND THAT WOULD HAVE BEEN A NICE 4865 03:12:21,363 --> 03:12:25,333 AREA TO BE ABLE TO MAKE SOME 4866 03:12:25,400 --> 03:12:26,434 STRONGER RECOMMENDATIONS, THAT 4867 03:12:26,501 --> 03:12:28,270 WAS CONSTRAINED BY BUDGETS. 4868 03:12:28,336 --> 03:12:29,604 WHEREAS THE OTHER BIG INSTITUTES 4869 03:12:29,671 --> 03:12:34,209 WITH A LOT OF MONEY, CLINICAL 4870 03:12:34,276 --> 03:12:36,044 TRIALS DO HAVE VERY DEVELOPED IN 4871 03:12:36,111 --> 03:12:44,386 SOME CASES CLINICAL TRIALS 4872 03:12:44,452 --> 03:12:44,653 NETWORKS. 4873 03:12:44,719 --> 03:12:46,888 THAT'S FOR LINDSEY ET AL. 4874 03:12:46,955 --> 03:12:49,858 >> I WAS GOING TO BRIEFLY ADD 4875 03:12:49,925 --> 03:12:51,493 WITH RESPECT TO NETWORKS THOUGH 4876 03:12:51,559 --> 03:12:53,695 TWO THINGS THAT MIGHT BE 4877 03:12:53,762 --> 03:12:55,096 HELPFUL. 4878 03:12:55,163 --> 03:12:56,965 ONE IS THERE WAS A CLINICAL 4879 03:12:57,032 --> 03:12:59,634 TRIALS STEWARDSHIP TASK FORCE 4880 03:12:59,701 --> 03:13:00,335 THAT I PARTICIPATED IN, NOW A 4881 03:13:00,402 --> 03:13:03,004 YEAR AND A HALF OR SO AGO, THAT 4882 03:13:03,071 --> 03:13:05,507 LED TO RECOMMENDATIONS THAT 4883 03:13:05,573 --> 03:13:07,575 SUGGESTED SOME CENTRALIZATION OF 4884 03:13:07,642 --> 03:13:09,144 RESOURCES TO SUPPORT CLINICAL 4885 03:13:09,210 --> 03:13:11,112 TRIALS, PRIMARILY FOR SMALLER 4886 03:13:11,179 --> 03:13:12,414 INSTITUTES THAT CAN'T AFFORD TO 4887 03:13:12,480 --> 03:13:14,582 KIND OF CREATE ALL THIS 4888 03:13:14,649 --> 03:13:17,652 INFRASTRUCTURE IN HOUSE. 4889 03:13:17,719 --> 03:13:18,887 SO, WE'RE STILL EAGER TO SEE 4890 03:13:18,954 --> 03:13:19,754 WHAT OPPORTUNITIES DEVELOP IN 4891 03:13:19,821 --> 03:13:21,723 THAT SPACE THAT WE COULD 4892 03:13:21,790 --> 03:13:22,924 LEVERAGE. 4893 03:13:22,991 --> 03:13:27,395 ALSO FOR THOSE WHO HEARD MY 4894 03:13:27,462 --> 03:13:30,131 COUNCIL REPORT THIS MORNING, DR. 4895 03:13:30,198 --> 03:13:31,333 BERTAGNOLLI IS VERY INTERESTED 4896 03:13:31,399 --> 03:13:35,070 IN THE CONCEPT OF A PRIMARY CARE 4897 03:13:35,136 --> 03:13:35,870 RESEARCH NETWORK. 4898 03:13:35,937 --> 03:13:37,472 AND AT LEAST FOR SOME OF THE 4899 03:13:37,539 --> 03:13:38,907 CONDITIONS WITHIN OUR MISSION 4900 03:13:38,974 --> 03:13:41,309 AREAS, I COULD IMAGINE A FUTURE 4901 03:13:41,376 --> 03:13:43,812 IN WHICH WE CAN LEVERAGE THAT 4902 03:13:43,878 --> 03:13:44,813 CLINICAL TRIAL RESEARCH NETWORK 4903 03:13:44,879 --> 03:13:46,548 BECAUSE IT'S MEANT TO BE ALL 4904 03:13:46,614 --> 03:13:48,550 INCLUSIVE IN TERMS OF SERVICES 4905 03:13:48,616 --> 03:13:50,285 THAT WOULD BE PROVIDED. 4906 03:13:50,352 --> 03:13:53,221 I SEE KURT'S HAND UP. 4907 03:13:53,288 --> 03:13:54,522 >> ACTUALLY THE MOST ACTIONABLE 4908 03:13:54,589 --> 03:13:57,726 ACTUALLY IS THE PLANNING GRANT. 4909 03:13:57,792 --> 03:13:59,894 SO THE OTHERS ARE BIGGER, TAKE 4910 03:13:59,961 --> 03:14:00,862 LONGER. 4911 03:14:00,929 --> 03:14:03,298 I THINK THE COMMUNITY ENGAGEMENT 4912 03:14:03,365 --> 03:14:06,901 IS ACTUALLY THE BIGGEST CHANGE. 4913 03:14:06,968 --> 03:14:10,205 WE'VE HAD LISTENING SESSIONS 4914 03:14:10,271 --> 03:14:11,840 LIKE PLANNING, LONG-RANGE PLAN 4915 03:14:11,906 --> 03:14:16,745 OR STRATEGIC PLAN, WE'VE HAD 4916 03:14:16,811 --> 03:14:17,979 LISTENING SESSIONS FOCUSED ON 4917 03:14:18,046 --> 03:14:20,281 LARGE ADVOCACY GROUPS MOSTLY BUT 4918 03:14:20,348 --> 03:14:22,984 MEETING SEPARATELY, MUSCLE AS AN 4919 03:14:23,051 --> 03:14:23,385 INDIVIDUAL THING. 4920 03:14:23,451 --> 03:14:24,753 AND THOSE INFORMED US BUT WE 4921 03:14:24,819 --> 03:14:28,256 REALLY NEVER HAVE DONE THAT AS A 4922 03:14:28,323 --> 03:14:30,725 WAY OF DEVELOPING FUNDING 4923 03:14:30,792 --> 03:14:31,426 OPPORTUNITY ANNOUNCEMENTS FOR 4924 03:14:31,493 --> 03:14:32,527 CLINICAL TRIALS. 4925 03:14:32,594 --> 03:14:35,463 SO IMPLEMENTING THAT WOULD BE 4926 03:14:35,530 --> 03:14:36,698 THE SINGLE BIGGEST CHANGE. 4927 03:14:36,765 --> 03:14:39,634 THE ROLE OF COUNCIL WOULD BE THE 4928 03:14:39,701 --> 03:14:40,835 SECOND BIGGEST CHANGE. 4929 03:14:40,902 --> 03:14:44,339 BECAUSE, YOU KNOW, WE HAVEN'T 4930 03:14:44,406 --> 03:14:46,074 EFFECTIVELY DONE THAT EITHER, 4931 03:14:46,141 --> 03:14:47,242 CERTAINLY NOT IN ANY SYSTEMATIC 4932 03:14:47,308 --> 03:14:48,276 WAY ON LARGER CLINICAL TRIALS SO 4933 03:14:48,343 --> 03:14:49,911 THAT'S A BIG CHANGE. 4934 03:14:49,978 --> 03:14:51,880 BOTH WOULD BE EXPERIMENTS. 4935 03:14:51,946 --> 03:14:56,918 I'M NOT 100% SURE THAT WE WOULD 4936 03:14:56,985 --> 03:14:58,219 GET WELL-ROUNDED CONSENSUS 4937 03:14:58,286 --> 03:14:59,220 OPINIONS ABOUT THE DOMINANT 4938 03:14:59,287 --> 03:15:01,923 NEEDS IN A FIELD FROM A ONE-HOUR 4939 03:15:01,990 --> 03:15:03,925 LISTENING SESSION. 4940 03:15:03,992 --> 03:15:05,326 I DON'T KNOW. 4941 03:15:05,393 --> 03:15:06,861 WHETHER WHAT CAME OUT WOULD BE 4942 03:15:06,928 --> 03:15:08,296 THE BEST CLINICAL TRIAL TO FUND, 4943 03:15:08,363 --> 03:15:09,497 I DON'T KNOW. 4944 03:15:09,564 --> 03:15:10,899 THAT'S AN EXPERIMENT. 4945 03:15:10,965 --> 03:15:15,203 WHETHER THE INPUT OF COUNCIL -- 4946 03:15:15,270 --> 03:15:16,171 YOU KNOW, COUNCIL DID GET 4947 03:15:16,237 --> 03:15:20,008 INVOLVED IN EVALUATION OF 4948 03:15:20,075 --> 03:15:24,579 LETTERS OF INTENT, FOR THE 4949 03:15:24,646 --> 03:15:26,548 GREATER THAN FIVE HUNDRED. 4950 03:15:26,614 --> 03:15:31,586 WE MET BEFORE EACH COWEN MEETING 4951 03:15:31,653 --> 03:15:31,820 MEET -- 4952 03:15:31,886 --> 03:15:33,254 COUNCIL MEETING WITH EACH GROUP, 4953 03:15:33,321 --> 03:15:34,656 THEY NEVER DECLINED ANY OF THEM. 4954 03:15:34,722 --> 03:15:35,523 IT'S TOUGH. 4955 03:15:35,590 --> 03:15:38,259 WHETHER THIS SECOND LEVEL REVIEW 4956 03:15:38,326 --> 03:15:39,561 MAKING IT MORE RIGOROUS WILL 4957 03:15:39,627 --> 03:15:40,795 HAVE AN IMPACT, I DON'T KNOW. 4958 03:15:40,862 --> 03:15:41,996 I HOPE SO. 4959 03:15:42,063 --> 03:15:43,598 BUT, AGAIN, IT'S AN EXPERIMENT. 4960 03:15:43,665 --> 03:15:46,034 SO I THINK THE MOST ACTIONABLE 4961 03:15:46,101 --> 03:15:48,002 IS THE PLANNING GRANT. 4962 03:15:48,069 --> 03:15:50,405 AND INVOLVEMENT OF COMMUNITY AND 4963 03:15:50,472 --> 03:15:53,475 DEVELOPMENT OF SPECIFIC FUNDING 4964 03:15:53,541 --> 03:15:54,242 OPPORTUNITY ANNOUNCEMENTS AND 4965 03:15:54,309 --> 03:15:58,613 SECONDARY REVIEW OF COUNCIL, 4966 03:15:58,680 --> 03:16:00,915 THOSE ARE ALSO MAJOR CHANGES, 4967 03:16:00,982 --> 03:16:01,583 OUTCOME TBD. 4968 03:16:01,649 --> 03:16:03,418 GO AHEAD. 4969 03:16:03,485 --> 03:16:06,488 >> I JUST ALSO WANTED -- A LOT 4970 03:16:06,554 --> 03:16:08,356 HAS CHANGED FROM THOSE TIMES 4971 03:16:08,423 --> 03:16:09,791 WHEN COUNCIL APPROVED EVERY 4972 03:16:09,858 --> 03:16:13,928 LETTER OF RECOMMENDATION. 4973 03:16:13,995 --> 03:16:16,231 SO I THINK THAT ALSO WANTED TO 4974 03:16:16,297 --> 03:16:18,733 MAKE THE POINT THAT I THINK YOUR 4975 03:16:18,800 --> 03:16:21,069 WORKING GROUP HAS APPROPRIATELY 4976 03:16:21,136 --> 03:16:24,205 CALLED OUT CERTAIN AREAS WHERE 4977 03:16:24,272 --> 03:16:25,640 WE REALLY WOULD IDEALLY HAVE 4978 03:16:25,707 --> 03:16:26,708 MORE EXPERTISE WITHIN THE 4979 03:16:26,774 --> 03:16:29,477 INSTITUTE AND RECOGNIZE THAT AS 4980 03:16:29,544 --> 03:16:29,777 WELL. 4981 03:16:29,844 --> 03:16:31,112 THAT'S SOMETHING THAT SUPPORTED 4982 03:16:31,179 --> 03:16:32,080 BY YOUR RECOMMENDATIONS AND 4983 03:16:32,147 --> 03:16:33,014 EXPERIENCE OF THE CLINICAL 4984 03:16:33,081 --> 03:16:34,282 TRIALS WORKING GROUP WE'RE 4985 03:16:34,349 --> 03:16:35,483 WORKING TOWARDS SO THINK THAT'S 4986 03:16:35,550 --> 03:16:37,118 GOING TO BE AN IMPORTANT ONE OF 4987 03:16:37,185 --> 03:16:39,320 THE NEXT STEPS THAT WE DO. 4988 03:16:39,387 --> 03:16:41,289 THINK THAT WILL HELP US 4989 03:16:41,356 --> 03:16:42,290 TREMENDOUSLY. 4990 03:16:42,357 --> 03:16:44,459 >> NOT TO MENTION PATIENT 4991 03:16:44,526 --> 03:16:45,326 ENGAGEMENT, LEST YOU FORGET WE 4992 03:16:45,393 --> 03:16:46,461 WERE TALKING ABOUT TWO HOURS 4993 03:16:46,528 --> 03:16:48,963 AGO, THAT'S ONE OF THEM. 4994 03:16:49,030 --> 03:16:51,366 NO QUESTION, DIVERSITY IS 4995 03:16:51,432 --> 03:16:54,335 SOMETHING THAT WE'VE NOT FUNDED 4996 03:16:54,402 --> 03:16:56,804 STUDIES WITH PLANNED ENROLLMENT, 4997 03:16:56,871 --> 03:16:59,007 DID NOT THINK WAS SUFFICIENTLY 4998 03:16:59,073 --> 03:16:59,240 DIVERSE. 4999 03:16:59,307 --> 03:17:03,611 WE'RE NOT STARTING FROM GROUND 5000 03:17:03,678 --> 03:17:03,811 ZERO. 5001 03:17:03,878 --> 03:17:04,712 MAKING THAT MORE RIGOROUS IS A 5002 03:17:04,779 --> 03:17:09,851 GOOD WAY TO PUT IT. 5003 03:17:09,918 --> 03:17:10,952 MY DELIGHT HERE IS THAT THERE 5004 03:17:11,019 --> 03:17:13,454 ARE QUITE A FEW THINGS THAT WE 5005 03:17:13,521 --> 03:17:15,657 ACTUALLY CAN DO, AND I THINK 5006 03:17:15,723 --> 03:17:18,159 WILL DO, AND WE'LL SEE WHAT 5007 03:17:18,226 --> 03:17:21,062 IMPACT THEY HAVE. 5008 03:17:21,129 --> 03:17:21,863 SO, KURT? 5009 03:17:21,930 --> 03:17:23,131 >> I JUST WANTED TO REITERATE 5010 03:17:23,198 --> 03:17:23,865 WHAT JOAN SAID. 5011 03:17:23,932 --> 03:17:25,133 WE DID LOOK AT OTHER INSTITUTES 5012 03:17:25,200 --> 03:17:27,035 TO TAKE THE BEST OF THE BEST BUT 5013 03:17:27,101 --> 03:17:28,670 ALSO WITHIN THE CONSTRAINTS OF 5014 03:17:28,736 --> 03:17:31,072 THE FACT THAT FOR THE SIZE OF 5015 03:17:31,139 --> 03:17:33,041 OUR BUDGET AND AS THINGS THAT 5016 03:17:33,107 --> 03:17:35,610 ARE BROUGHT UP, THINGS THAT WE 5017 03:17:35,677 --> 03:17:37,879 PROBABLY BEST OF THE BEST TO 5018 03:17:37,946 --> 03:17:39,280 HAVE A CLINICAL TRIAL NETWORK, 5019 03:17:39,347 --> 03:17:42,217 BEST OF THE BEST TO HAVE A DATA 5020 03:17:42,283 --> 03:17:44,619 REPOSITORY, THOSE ARE NOT THINGS 5021 03:17:44,686 --> 03:17:46,287 THAT ARE WITHIN OUR BUDGET SCOPE 5022 03:17:46,354 --> 03:17:47,488 FOR NIAMS BUT THOSE ARE THINGS 5023 03:17:47,555 --> 03:17:49,123 WE HAVE TO LOOK FOR THE FUTURE. 5024 03:17:49,190 --> 03:17:52,727 SO WE DID TRY THE BEST OF THE 5025 03:17:52,794 --> 03:18:00,168 BEST, WITHIN REASON WITHIN OUR 5026 03:18:00,235 --> 03:18:04,439 CONSTRAINTS OF OUR INSTITUTE. 5027 03:18:04,505 --> 03:18:06,074 >> SUZANNE HAS A QUESTION. 5028 03:18:06,140 --> 03:18:08,810 >> I WONDER IF YOU WOULD 5029 03:18:08,876 --> 03:18:09,811 ELABORATE ON THE IMPACT OF 5030 03:18:09,877 --> 03:18:11,746 CLINICAL TRIALS AND HOW TO LOOK 5031 03:18:11,813 --> 03:18:19,187 AT THE QUESTION OF POTENTIAL 5032 03:18:19,254 --> 03:18:21,389 IMPACT IF IT'S CHANGING OF 5033 03:18:21,456 --> 03:18:21,956 CLINICAL PRACTICE, LONG-TERM 5034 03:18:22,023 --> 03:18:25,760 GOALS IN TERMS OF CHANGING 5035 03:18:25,827 --> 03:18:26,027 PRACTICE? 5036 03:18:26,094 --> 03:18:27,195 THAT WAS SOMETHING THAT WE HAVE 5037 03:18:27,262 --> 03:18:30,164 THOUGHT ABOUT IN THE PAST, VERY 5038 03:18:30,231 --> 03:18:31,232 CHALLENGING, I'M WONDERING IF 5039 03:18:31,299 --> 03:18:34,569 THERE ARE ANY INSIGHTS. 5040 03:18:34,636 --> 03:18:36,838 THE SECOND ONE IF YOU COULD 5041 03:18:36,904 --> 03:18:40,341 ELABORATE ON PARTNERSHIPS. 5042 03:18:40,408 --> 03:18:41,843 WE HAVE EXPERIENCED A STUDY AND 5043 03:18:41,909 --> 03:18:44,479 CLINICAL TRIALS SUPPORTED 5044 03:18:44,545 --> 03:18:46,648 THROUGH PARTNERSHIPS, IN 5045 03:18:46,714 --> 03:18:47,982 PARTNERSHIP WITH OTHER ENTITIES, 5046 03:18:48,049 --> 03:18:49,183 WONDERING IF THERE'S ADDITIONAL 5047 03:18:49,250 --> 03:18:50,151 CONSIDERATIONS THAT YOU WOULD 5048 03:18:50,218 --> 03:18:54,889 LIKE US TO THINK ABOUT. 5049 03:18:54,956 --> 03:18:59,360 >> YEAH, I AGREE, IMPACT IS A 5050 03:18:59,427 --> 03:19:01,329 TOUGH NUT TO CRACK. 5051 03:19:01,396 --> 03:19:04,932 YOU GAVE THE EXAMPLE DOES THIS 5052 03:19:04,999 --> 03:19:06,034 CLINICAL TRIAL HAVE THE 5053 03:19:06,100 --> 03:19:08,102 POTENTIAL TO CHANGE, AS YOU 5054 03:19:08,169 --> 03:19:09,671 SAID, CLINICAL PRACTICE OR 5055 03:19:09,737 --> 03:19:11,606 CHANGE TREATMENT GUIDELINES, SO 5056 03:19:11,673 --> 03:19:12,707 OUR PROFESSIONALS SOCIETIES 5057 03:19:12,774 --> 03:19:13,808 UPDATE TREATMENTS OF DISEASES, 5058 03:19:13,875 --> 03:19:16,644 IS THIS TRIAL GOING TO IMPACT 5059 03:19:16,711 --> 03:19:20,915 THOSE GUIDELINES WHICH WOULD 5060 03:19:20,982 --> 03:19:21,316 AFFECT EVERYBODY. 5061 03:19:21,382 --> 03:19:26,721 WOULD IT -- I GUESS WOULD IT 5062 03:19:26,788 --> 03:19:27,889 POSSIBLY PREVENT DISEASE OR 5063 03:19:27,955 --> 03:19:30,425 REDUCE INCIDENCE OF DISEASE? 5064 03:19:30,491 --> 03:19:32,093 OR REDUCE SIDE EFFECTS IN SOME 5065 03:19:32,160 --> 03:19:32,427 MANNER? 5066 03:19:32,493 --> 03:19:34,495 I GUESS ANYTHING THAT REALLY HAS 5067 03:19:34,562 --> 03:19:42,470 A DIRECT LINK, MAYBE SOMEONE 5068 03:19:42,537 --> 03:19:44,672 ELSE COULD DEFINE IT BETTER THAN 5069 03:19:44,739 --> 03:19:45,440 THAT. 5070 03:19:45,506 --> 03:19:50,244 IN TERMS OF PARTNERSHIP, MY OWN 5071 03:19:50,311 --> 03:19:54,382 PERSONAL EXPERIENCE, WE HAD TO 5072 03:19:54,449 --> 03:19:55,817 GO FIND PARTNERS AND WE WERE 5073 03:19:55,883 --> 03:19:58,786 CONFUSED HOW TO DO THAT. 5074 03:19:58,853 --> 03:20:05,793 WE SET UP MEETINGS, THE TRIAL, 5075 03:20:05,860 --> 03:20:07,628 WE MET WITH NIDDK, THEY SAID 5076 03:20:07,695 --> 03:20:09,831 WE'RE NOT INTERESTED. 5077 03:20:09,897 --> 03:20:11,265 MET WITH NHLBI, WELL, WE ONLY 5078 03:20:11,332 --> 03:20:14,635 FUND THIS TYPE OF TRIAL. 5079 03:20:14,702 --> 03:20:15,937 WE WENT TO ANOTHER INSTITUTE. 5080 03:20:16,003 --> 03:20:19,907 WE WERE UNCLEAR HOW TO GO ABOUT 5081 03:20:19,974 --> 03:20:20,308 THIS. 5082 03:20:20,375 --> 03:20:23,277 AND THEN CHUCK -- FINALLY -- 5083 03:20:23,344 --> 03:20:24,712 SUZANNE, YOU WERE WORKING WITH 5084 03:20:24,779 --> 03:20:31,919 US CLOSELY ON THIS, AND WE THEN 5085 03:20:31,986 --> 03:20:33,554 WENT TO FNIH, THAT'S ULTIMATELY 5086 03:20:33,621 --> 03:20:37,191 HOW WE GOT PARTNERS FOR THAT 5087 03:20:37,258 --> 03:20:38,593 TRIAL, VERY SUCCESSFUL BUT CHUCK 5088 03:20:38,659 --> 03:20:42,430 TOLD ME DURING OUR MEETINGS THAT 5089 03:20:42,497 --> 03:20:45,400 HE'S VERY INVOLVED IF HE 5090 03:20:45,466 --> 03:20:48,102 SUSPECTS IN ADVANCE THAT 5091 03:20:48,169 --> 03:20:51,305 PROPOSED CLINICAL TRIAL WILL 5092 03:20:51,372 --> 03:20:53,808 REQUIRE ADDITIONAL FUNDING AND 5093 03:20:53,875 --> 03:20:55,343 HAS SEMBLANCE OF RESEMBLANCE TO 5094 03:20:55,410 --> 03:20:56,344 CARDIOLOGY OR NEPHROLOGY OR 5095 03:20:56,411 --> 03:20:57,779 SOMETHING LIKE THAT, HE WILL 5096 03:20:57,845 --> 03:20:59,180 START REACHING OUT IN ADVANCE TO 5097 03:20:59,247 --> 03:21:02,049 LOOK AT THE FEASIBILITY OF 5098 03:21:02,116 --> 03:21:02,583 FUNDING PARTNERSHIPS. 5099 03:21:02,650 --> 03:21:04,118 I GUESS "HEAL" IS A GREAT 5100 03:21:04,185 --> 03:21:09,157 EXAMPLE OF SOME PARTNERSHIPS AS 5101 03:21:09,223 --> 03:21:09,791 WELL. 5102 03:21:09,857 --> 03:21:13,294 OH I THINK JUST MAKING PEOPLE 5103 03:21:13,361 --> 03:21:18,366 AWARE THAT THEY DON'T HAVE TO 5104 03:21:18,433 --> 03:21:19,467 WANT TO PURSUE A CLINICAL TRIAL 5105 03:21:19,534 --> 03:21:21,436 IF IT'S TOO EXPENSIVE BUT CAN 5106 03:21:21,502 --> 03:21:27,008 TALK TO THE P.O. ABOUT THE 5107 03:21:27,074 --> 03:21:27,775 POSSIBILITIES OF PARTNERSHIPS 5108 03:21:27,842 --> 03:21:29,510 AND ADVISE AND HELP APPLICANT ON 5109 03:21:29,577 --> 03:21:34,015 THE PATH TOWARDS THAT IS WHAT I 5110 03:21:34,081 --> 03:21:39,454 WAS TALKING ABOUT. 5111 03:21:39,520 --> 03:21:41,656 >> JINOOS HAS A HAND UP AND I 5112 03:21:41,722 --> 03:21:43,724 WANT TO GIVE CHUCK THE 5113 03:21:43,791 --> 03:21:46,160 OPPORTUNITY, AND FOR OUR AD HOC 5114 03:21:46,227 --> 03:21:47,028 MEMBERS, PLEASE FEEL FREE TO 5115 03:21:47,094 --> 03:21:49,197 SPEAK UP IF YOU WANT TO SHARE 5116 03:21:49,263 --> 03:21:49,530 PERSPECTIVES. 5117 03:21:49,597 --> 03:21:52,467 FOR THOSE WHO MIGHT BE 5118 03:21:52,533 --> 03:21:54,035 CONTEMPLATING CLINICAL TRIALS, 5119 03:21:54,101 --> 03:21:55,670 WHAT CHALLENGES YOU SEE, AND 5120 03:21:55,736 --> 03:21:59,941 MAYBE TEO HAS A CONTINUE. 5121 03:22:00,007 --> 03:22:02,243 JINOOS, CHUCK, AND FROM THERE. 5122 03:22:02,310 --> 03:22:03,444 >> THANK YOU, JOAN. 5123 03:22:03,511 --> 03:22:05,546 JUST FANTASTIC. 5124 03:22:05,613 --> 03:22:07,181 THE BREADTH AND ALSO DEPTH OF 5125 03:22:07,248 --> 03:22:11,586 THE WORK YOU DID, IT'S VERY 5126 03:22:11,652 --> 03:22:11,886 IMPRESSIVE. 5127 03:22:11,953 --> 03:22:14,722 I'M EXCITED ABOUT NEW GRANT 5128 03:22:14,789 --> 03:22:15,022 MECHANISMS. 5129 03:22:15,089 --> 03:22:17,024 I JUST WONDER IF YOU COULD SAY A 5130 03:22:17,091 --> 03:22:19,727 LITTLE BIT MORE ABOUT THE 5131 03:22:19,794 --> 03:22:21,762 COUNCIL REVIEW, I WANT TO MAKE 5132 03:22:21,829 --> 03:22:24,398 SURE I UNDERSTAND SORT OF THE 5133 03:22:24,465 --> 03:22:25,366 BROADER PURPOSE. 5134 03:22:25,433 --> 03:22:28,436 DO YOU ENVISION A SITUATION 5135 03:22:28,503 --> 03:22:29,871 WHERE, FOR EXAMPLE, FIVE GRANTS 5136 03:22:29,937 --> 03:22:31,939 ARE REVIEWED BY COUNCIL BUT 5137 03:22:32,006 --> 03:22:35,009 THERE'S ONLY FUNDING FOR FOUR OF 5138 03:22:35,076 --> 03:22:35,209 THEM? 5139 03:22:35,276 --> 03:22:37,078 OR DO YOU ENVISION IT HAS 5140 03:22:37,144 --> 03:22:41,649 NOTHING TO DO WITH FUNDING AND 5141 03:22:41,716 --> 03:22:44,085 THERE'S DETERMINATION OF IMPACT? 5142 03:22:44,151 --> 03:22:48,689 WHAT'S LIKE THE GOAL OF THAT 5143 03:22:48,756 --> 03:22:49,657 COUNCIL REVIEW? 5144 03:22:49,724 --> 03:22:51,959 >> IT REALLY IS FOCUSED ON 5145 03:22:52,026 --> 03:22:53,594 IMPACT. 5146 03:22:53,661 --> 03:22:55,129 WE'RE NOT SAYING YOU SHOULD PUT 5147 03:22:55,196 --> 03:22:56,030 BUDGET INTO THE MOCKS. 5148 03:22:56,097 --> 03:23:01,636 I THINK -- INTO THE FIX, THAT'S 5149 03:23:01,702 --> 03:23:04,138 WHAT NIAMS FOLKS HAVE TO DO, 5150 03:23:04,205 --> 03:23:05,373 WEIGH THE BUDGET. 5151 03:23:05,439 --> 03:23:07,542 SOMETIMES TRIALS MAY BE RATED 5152 03:23:07,608 --> 03:23:09,510 HIGH, WE TALKED ABOUT THIS IN 5153 03:23:09,577 --> 03:23:11,913 OUR COMMITTEE, THAT TRIAL MIGHT 5154 03:23:11,979 --> 03:23:14,982 GET A VERY HIGH SCIENTIFIC 5155 03:23:15,049 --> 03:23:16,384 RATING FOR ITS FIELD, BUT WHEN 5156 03:23:16,450 --> 03:23:18,920 YOU THINK ABOUT WHAT IT'S GOING 5157 03:23:18,986 --> 03:23:20,221 TO CONTRIBUTE TO PATIENT CARE 5158 03:23:20,288 --> 03:23:22,757 AND QUALITY OF LIFE AND 5159 03:23:22,823 --> 03:23:23,958 SURVIVORSHIP AND WHATEVER ELSE, 5160 03:23:24,025 --> 03:23:27,662 IT'S KIND OF NOT -- IT'S 5161 03:23:27,728 --> 03:23:27,929 MIDDLING. 5162 03:23:27,995 --> 03:23:29,997 SOMETHING COULD HAVE A GREAT 5163 03:23:30,064 --> 03:23:31,499 SCIENTIFIC SCORE AMIDST THE 5164 03:23:31,566 --> 03:23:36,537 EXPERTS IN THE FIELD, BUT YET 5165 03:23:36,604 --> 03:23:37,538 NOT BE THAT IMPACTFUL. 5166 03:23:37,605 --> 03:23:38,739 THOSE ARE THINGS WE'RE TRYING TO 5167 03:23:38,806 --> 03:23:40,274 WEED OUT. 5168 03:23:40,341 --> 03:23:43,978 WHY FUND A TRIAL REGARDLESS OF 5169 03:23:44,045 --> 03:23:44,579 HOW STRUCTURALLY OR 5170 03:23:44,645 --> 03:23:47,281 SCIENTIFICALLY SOUND IT IS IF IT 5171 03:23:47,348 --> 03:23:51,519 DOESN'T SEEM TO HAVE IMPACT; 5172 03:23:51,586 --> 03:23:53,487 THAT'S REALLY THE EXTENT OF IT. 5173 03:23:53,554 --> 03:23:56,257 WE'VE ALL BEEN ON STUDY SECTIONS 5174 03:23:56,324 --> 03:23:57,658 WHERE YOU'RE THINKING, I DON'T 5175 03:23:57,725 --> 03:23:59,093 KNOW, THIS IS SO IMPORTANT BUT 5176 03:23:59,160 --> 03:24:04,432 ALL THE EXPERTS IN THAT FIELD 5177 03:24:04,498 --> 03:24:05,299 THINK IT'S SCIENTIFICALLY GREAT, 5178 03:24:05,366 --> 03:24:07,168 WE HAVE TO GO ALONG THOSE LINES, 5179 03:24:07,234 --> 03:24:10,004 SO THIS GIVES AN OPPORTUNITY TO 5180 03:24:10,071 --> 03:24:13,507 PUT IMPACT OUT THERE BY ITSELF. 5181 03:24:13,574 --> 03:24:15,943 >> MAYBE A FOLLOW-UP QUESTION 5182 03:24:16,010 --> 03:24:19,647 FOR LINDSEY, WE'RE TALKING ABOUT 5183 03:24:19,714 --> 03:24:22,817 SELECT PAY EARLIER TODAY. 5184 03:24:22,883 --> 03:24:28,422 ARE THERE CONNECTIONS BETWEEN 5185 03:24:28,489 --> 03:24:33,027 THESE TWO TOPICS? 5186 03:24:33,094 --> 03:24:35,630 >> YES, AND ALREADY APPLICATIONS 5187 03:24:35,696 --> 03:24:36,731 THAT -- IT'S CLINICAL TRIALS 5188 03:24:36,797 --> 03:24:39,500 THAT WILL BE ASSOCIATED WITH 5189 03:24:39,567 --> 03:24:41,535 BUDGETS, OVER $500,000 DIRECT 5190 03:24:41,602 --> 03:24:45,473 COSTS PER YEAR, NEEDS SPECIAL 5191 03:24:45,539 --> 03:24:49,310 PERMISSION TO APPLY, AND THEN 5192 03:24:49,377 --> 03:24:52,913 THE -- THOSE DECISIONS ARE NOT 5193 03:24:52,980 --> 03:24:53,881 PAYLINE DRIVEN. 5194 03:24:53,948 --> 03:24:56,517 WE HAVE A SELECT PAY PROCESS FOR 5195 03:24:56,584 --> 03:24:57,518 THOSE. 5196 03:24:57,585 --> 03:24:59,153 BACK TO THIS ISSUE, IT'S ABOUT 5197 03:24:59,220 --> 03:25:00,788 IMPACT, IT'S ALL ABOUT THE 5198 03:25:00,855 --> 03:25:03,524 DOLLARS WE HAVE, RIGHT? 5199 03:25:03,591 --> 03:25:04,859 YOU KNOW, AND BALANCING ACROSS 5200 03:25:04,925 --> 03:25:10,464 ALL OF THESE DIFFERENT AREAS. 5201 03:25:10,531 --> 03:25:13,167 BUT WE ALREADY, YOU KNOW, ARE 5202 03:25:13,234 --> 03:25:16,570 APPLYING THIS SELECT PAY PROCESS 5203 03:25:16,637 --> 03:25:21,175 TO ANY STUDY OVER A CERTAIN 5204 03:25:21,242 --> 03:25:21,709 DIRECT COST. 5205 03:25:21,776 --> 03:25:23,444 THERE'S ALSO, YOU KNOW, A 5206 03:25:23,511 --> 03:25:25,079 SEPARATE REVIEW PROCESS WE'RE 5207 03:25:25,146 --> 03:25:27,815 GOING TO GET TO LATER TODAY, 5208 03:25:27,882 --> 03:25:28,582 ASSOCIATED WITH INVESTIGATORS 5209 03:25:28,649 --> 03:25:30,751 THAT HAVE OVER A CERTAIN AMOUNT 5210 03:25:30,818 --> 03:25:31,318 OF FUNDING. 5211 03:25:31,385 --> 03:25:35,723 THAT'S KIND OF A DIFFERENT SET 5212 03:25:35,790 --> 03:25:38,993 OF ISSUES AND -- TO BALANCE, BUT 5213 03:25:39,060 --> 03:25:40,327 I AGREE, BUT ALSO MAYBE THIS IS 5214 03:25:40,394 --> 03:25:43,164 THE POINT YOU WERE GETTING AT. 5215 03:25:43,230 --> 03:25:45,433 JOAN GAVE A GREAT EXAMPLE OF WHY 5216 03:25:45,499 --> 03:25:49,503 WE THINK THE SELECT PAY PROCESS 5217 03:25:49,570 --> 03:25:50,504 IS IMPORTANT GENERALLY. 5218 03:25:50,571 --> 03:25:52,573 MEMBERS OF THE STUDY SECTION AT 5219 03:25:52,640 --> 03:25:54,208 CSR HAVE A CERTAIN PERSPECTIVE 5220 03:25:54,275 --> 03:25:55,943 AND THEY ARE CHARGED WITH A 5221 03:25:56,010 --> 03:25:57,278 CERTAIN SET OF CRITERIA THAT 5222 03:25:57,344 --> 03:26:00,748 THEY NEED TO ASSESS BUT IT IS 5223 03:26:00,815 --> 03:26:02,583 NOT CONSIDERING NECESSARILY 5224 03:26:02,650 --> 03:26:03,851 WHAT'S NEEDED MOST IN THE FIELD, 5225 03:26:03,918 --> 03:26:05,586 WHAT'S GOING TO HAVE THE MOST 5226 03:26:05,653 --> 03:26:06,887 IMPACT, WHAT ARE THE PRIORITIES 5227 03:26:06,954 --> 03:26:09,323 OF THE INSTITUTE THAT THINKS 5228 03:26:09,390 --> 03:26:10,758 ABOUT THOSE ISSUES EVERY DAY, 5229 03:26:10,825 --> 03:26:12,493 SO, YOU KNOW, WE CONSIDER OUR 5230 03:26:12,560 --> 03:26:15,029 JOBS TO BE TO CONSIDER THE 5231 03:26:15,096 --> 03:26:15,896 TECHNICAL MERITS SUCH AS 5232 03:26:15,963 --> 03:26:18,299 REFLECTED IN THE SCORE BUT TO 5233 03:26:18,365 --> 03:26:20,701 APPLY THIS OTHER FILTER, THIS 5234 03:26:20,768 --> 03:26:23,104 OTHER SET OF QUESTIONS, ABOUT 5235 03:26:23,170 --> 03:26:23,437 IMPACT. 5236 03:26:23,504 --> 03:26:25,439 AND SO WE WANTED TO HAVE 5237 03:26:25,506 --> 03:26:26,974 FLEXIBILITY TO BE ABLE TO FUND 5238 03:26:27,041 --> 03:26:29,276 SOME THINGS THAT ARE ABOVE THE 5239 03:26:29,343 --> 03:26:33,647 PAYLINE BECAUSE OF THESE OTHER 5240 03:26:33,714 --> 03:26:34,715 REASONS. 5241 03:26:34,782 --> 03:26:36,350 >> TEO, YOU WANTED TO MAKE A 5242 03:26:36,417 --> 03:26:36,584 COMMENT. 5243 03:26:36,650 --> 03:26:37,251 >> YES, THANK YOU. 5244 03:26:37,318 --> 03:26:39,220 I ALSO WANT TO THANK THE WORKING 5245 03:26:39,286 --> 03:26:42,623 GROUP FOR THE REALLY THOROUGH 5246 03:26:42,690 --> 03:26:44,625 AND THOUGHTFUL ASSESSMENT AND 5247 03:26:44,692 --> 03:26:45,526 EXCELLENT RECOMMENDATIONS. 5248 03:26:45,593 --> 03:26:48,596 I WANTED TO MAKE A COUPLE 5249 03:26:48,662 --> 03:26:48,863 COMMENTS. 5250 03:26:48,929 --> 03:26:51,132 ONE RELATES TO THE NOTION OF 5251 03:26:51,198 --> 03:26:52,900 IDENTIFYING THE MOST IMPORTANT 5252 03:26:52,967 --> 03:26:55,836 AND IMPACTFUL STUDIES TO BE 5253 03:26:55,903 --> 03:26:56,070 PURSUED. 5254 03:26:56,137 --> 03:26:57,138 I PARTICULARLY RESONATED WITH 5255 03:26:57,204 --> 03:26:59,140 THE COMMENT JOAN MADE, TO FOCUS 5256 03:26:59,206 --> 03:27:00,775 ON STUDIES THAT INDUSTRY WILL 5257 03:27:00,841 --> 03:27:05,045 NOT BE DOING BECAUSE WE WANT TO 5258 03:27:05,112 --> 03:27:06,247 COMPLEMENT THE APPROACHES BUT 5259 03:27:06,313 --> 03:27:08,916 ALSO FROM A PATIENT PERSPECTIVE 5260 03:27:08,983 --> 03:27:09,950 AND PATIENT ADVOCACY PERSPECTIVE 5261 03:27:10,017 --> 03:27:10,785 THE TYPES OF CLINICAL TRIALS 5262 03:27:10,851 --> 03:27:12,720 THAT AT LEAST WE HEAR FROM 5263 03:27:12,787 --> 03:27:15,022 PEOPLE LIVING WITH LUPUS THEY 5264 03:27:15,089 --> 03:27:16,457 ARE MOST INTERESTED IN HAVING 5265 03:27:16,524 --> 03:27:17,858 DONE AND PARTICIPATING IN 5266 03:27:17,925 --> 03:27:23,664 STUDIES LOOKING AT LIFESTYLE 5267 03:27:23,731 --> 03:27:25,966 INTERVENTION, HOW DOES THE DIET, 5268 03:27:26,033 --> 03:27:28,836 STRESS, IMPACT THE DISEASE 5269 03:27:28,903 --> 03:27:29,236 COURSE. 5270 03:27:29,303 --> 03:27:31,238 APPROACHES IN THEIR OWN LIVES, 5271 03:27:31,305 --> 03:27:33,741 SEEING GREAT SUCCESSES, AND SO I 5272 03:27:33,808 --> 03:27:37,011 HOPE THROUGH THIS STAKEHOLDER 5273 03:27:37,077 --> 03:27:38,979 ENGAGEMENT SOME OF THESE 5274 03:27:39,046 --> 03:27:40,714 APPROACHES OR CLINICAL TRIALS TO 5275 03:27:40,781 --> 03:27:42,716 STUDY THESE TYPES OF 5276 03:27:42,783 --> 03:27:43,918 INTERVENTIONS WILL COME FORWARD, 5277 03:27:43,984 --> 03:27:45,986 AND THAT LEADS ME TO MY 5278 03:27:46,053 --> 03:27:46,253 QUESTION. 5279 03:27:46,320 --> 03:27:48,823 WHETHER THIS ALSO PRESENTS AN 5280 03:27:48,889 --> 03:27:50,457 OPPORTUNITY, OR AN OPPORTUNITY 5281 03:27:50,524 --> 03:27:56,831 FOR US ACROSS CENTER AND 5282 03:27:56,897 --> 03:27:57,798 INSTITUTE DIRECTIONS THAT 5283 03:27:57,865 --> 03:28:03,904 LINDSEY IS A PROMOTING, MAYBE 5284 03:28:03,971 --> 03:28:07,575 WORKING WITH NATIONAL INSTITUTE 5285 03:28:07,641 --> 03:28:09,510 OF COMPLEMENTARY HEALTH, 5286 03:28:09,577 --> 03:28:10,344 WONDERING IF CONSIDERATIONS HAVE 5287 03:28:10,411 --> 03:28:11,078 BEEN MADE. 5288 03:28:11,145 --> 03:28:14,248 >> CERTAINLY YOU RAISE A GREAT 5289 03:28:14,315 --> 03:28:17,651 EXAMPLE OF HOW THERE MAY BE 5290 03:28:17,718 --> 03:28:19,820 CONSIDERATIONS SUCH AS IMPACT ON 5291 03:28:19,887 --> 03:28:21,589 PATIENT, PATIENT PERSPECTIVE 5292 03:28:21,655 --> 03:28:22,590 THAT WON'T NECESSARILY TRANSLATE 5293 03:28:22,656 --> 03:28:24,525 INTO GREAT SCORES BUT IF WE HAVE 5294 03:28:24,592 --> 03:28:27,027 A PROCESS FOR DETERMINING THEIR 5295 03:28:27,094 --> 03:28:30,898 IMPORTANCE THEN IT GIVES US AN 5296 03:28:30,965 --> 03:28:31,765 OPPORTUNITY TO BE DIRECTING 5297 03:28:31,832 --> 03:28:33,834 FUNDS IN THAT AREA. 5298 03:28:33,901 --> 03:28:36,470 IN TERMS OF PARTNERING WITH 5299 03:28:36,537 --> 03:28:39,106 INSTITUTES, WE JUST HAD A DEEP 5300 03:28:39,173 --> 03:28:40,207 DIVE DISCUSSION ABOUT 5301 03:28:40,274 --> 03:28:40,507 CO-FUNDING. 5302 03:28:40,574 --> 03:28:42,810 YOU KNOW, HOW CAN WE DEVELOP THE 5303 03:28:42,877 --> 03:28:46,213 MOST EFFECTIVE STRATEGY FOR 5304 03:28:46,280 --> 03:28:47,648 CO-FUNDING, MOST ADVANTAGEOUS IS 5305 03:28:47,715 --> 03:28:49,583 WHEN WE DIRECT INVESTIGATORS TO 5306 03:28:49,650 --> 03:28:51,452 OTHER OR WE LEVERAGE OTHER 5307 03:28:51,518 --> 03:28:53,420 RESOURCES THAT DON'T COME OUT OF 5308 03:28:53,487 --> 03:28:56,257 OUR BUDGET BUT THERE HAVE BEEN 5309 03:28:56,323 --> 03:28:57,691 SUCCESSFUL EXAMPLES OF 5310 03:28:57,758 --> 03:29:01,295 CO-FUNDING OR PARTNERING WITH 5311 03:29:01,362 --> 03:29:03,030 OTHER INSTITUTES. 5312 03:29:03,097 --> 03:29:03,898 IT'S MAYBE MORE CHALLENGING THAN 5313 03:29:03,964 --> 03:29:05,799 YOU'D LIKE BUT I THINK THE 5314 03:29:05,866 --> 03:29:09,737 COMMENT THAT WAS MADE ABOUT 5315 03:29:09,803 --> 03:29:10,838 CHUCK REACHING OUT EARLY, 5316 03:29:10,905 --> 03:29:12,006 SOMETIMES WE'RE IN THE BEST 5317 03:29:12,072 --> 03:29:13,774 POSITION TO KNOW WHAT OTHER 5318 03:29:13,841 --> 03:29:14,875 PARTNERS MIGHT EXIST ACROSS THE 5319 03:29:14,942 --> 03:29:16,744 NIH OR WHAT OTHER RESOURCE OR 5320 03:29:16,810 --> 03:29:19,780 FUNDING OPPORTUNITY, SO WE'RE 5321 03:29:19,847 --> 03:29:20,981 GENERALLY JUST BECAUSE OUR 5322 03:29:21,048 --> 03:29:22,016 BUDGET IS LIMITED THINKING ABOUT 5323 03:29:22,082 --> 03:29:27,354 THAT ALL OF THE TIME, TRYING TO 5324 03:29:27,421 --> 03:29:28,222 BE STRATEGIC. 5325 03:29:28,289 --> 03:29:32,626 SOMETHING WE'VE BEEN CHALLENGED 5326 03:29:32,693 --> 03:29:35,029 BY, TRYING TO UNDERSTAND, I'M 5327 03:29:35,095 --> 03:29:37,197 REMINDED OF AN EXAMPLE OF A VERY 5328 03:29:37,264 --> 03:29:39,600 EXPENSIVE TRIAL THAT WE WANTED 5329 03:29:39,667 --> 03:29:42,469 TO SUPPORT BUT WAS WELL, WELL 5330 03:29:42,536 --> 03:29:44,738 BEYOND OUR MEANS. 5331 03:29:44,805 --> 03:29:48,609 AND WE BASICALLY -- IT WAS 5332 03:29:48,676 --> 03:29:51,111 ADDITION WE SAID WE CAN PROVIDE 5333 03:29:51,178 --> 03:29:52,980 X, THE REST OF THE 80% OR 5334 03:29:53,047 --> 03:29:54,615 WHATEVER IT WAS YOU'LL HAVE TO 5335 03:29:54,682 --> 03:29:56,583 RAISE YOURSELF OR IDENTIFY. 5336 03:29:56,650 --> 03:29:57,584 THE INVESTIGATORS WERE ACTUALLY 5337 03:29:57,651 --> 03:29:58,485 ABLE TO DO IT. 5338 03:29:58,552 --> 03:30:00,354 AND BUT IT WAS KIND OF AWKWARD 5339 03:30:00,421 --> 03:30:02,957 SO DO WE COMMIT TO SOMETHING 5340 03:30:03,023 --> 03:30:05,726 WHERE WE ONLY HAVE 20% OF THE 5341 03:30:05,793 --> 03:30:06,160 BUDGET? 5342 03:30:06,226 --> 03:30:08,896 HOW DOES THAT PROCESS GET WORKED 5343 03:30:08,963 --> 03:30:09,163 OUT? 5344 03:30:09,229 --> 03:30:10,731 MORE IMPORTANTLY, JOAN OR 5345 03:30:10,798 --> 03:30:12,066 SOMEONE MENTIONED BEFORE, CAN WE 5346 03:30:12,132 --> 03:30:13,734 DEVELOP LIKE BEST PRACTICES FOR 5347 03:30:13,801 --> 03:30:15,903 HOW YOU IDENTIFY FUNDING 5348 03:30:15,970 --> 03:30:16,704 PARTNERS? 5349 03:30:16,770 --> 03:30:19,540 LET'S -- I MEAN, THE WORST CASE 5350 03:30:19,606 --> 03:30:23,677 AS 5351 03:30:23,744 --> 03:30:24,445 SCENARIO FOR INDIVIDUAL 5352 03:30:24,511 --> 03:30:29,817 INVESTIGATORS TO FIGURE OUT ON 5353 03:30:29,883 --> 03:30:32,186 THEIR OWN WHAT EXAMPLES CAN WE 5354 03:30:32,252 --> 03:30:33,988 REFINE AND SHARE TO HELP 5355 03:30:34,054 --> 03:30:35,289 EVERYBODY BUT IT'S COMPLICATED 5356 03:30:35,356 --> 03:30:36,056 TO DO THAT. 5357 03:30:36,123 --> 03:30:36,790 PLEASE. 5358 03:30:36,857 --> 03:30:40,527 >> TO FOLLOW UP ON THIS WITH, TO 5359 03:30:40,594 --> 03:30:41,195 COLLABORATIONS DON'T NECESSARILY 5360 03:30:41,261 --> 03:30:48,302 HAVE TO BE JUST THROUGH C.I.s, 5361 03:30:48,369 --> 03:30:50,170 MAYBE OUTSIDE ORGANIZATIONS, 5362 03:30:50,237 --> 03:30:53,073 MAYBE THEY ARE INTERESTED IN 5363 03:30:53,140 --> 03:30:55,743 PARTNERING FINANCIALLY OR WITH 5364 03:30:55,809 --> 03:30:57,845 IN-KIND ORGANIZATIONS, SOME HAVE 5365 03:30:57,911 --> 03:30:59,213 CLINICAL TRIAL NETWORKS. 5366 03:30:59,279 --> 03:31:00,714 JOAN MENTIONED WITH THE WORKING 5367 03:31:00,781 --> 03:31:01,548 GROUP RECOMMENDATIONS. 5368 03:31:01,615 --> 03:31:03,017 THERE MAY BE VALUE OTHER 5369 03:31:03,083 --> 03:31:05,319 PARTNERS COULD BRING TO THE 5370 03:31:05,386 --> 03:31:06,720 TABLE, PERHAPS NIAMS COALITION 5371 03:31:06,787 --> 03:31:08,489 MAY BE ONE APPROACH TO THAT. 5372 03:31:08,555 --> 03:31:11,658 >> AND THIS COMES UP, WE MEET 5373 03:31:11,725 --> 03:31:12,226 WITH ORGANIZATIONS REGULARLY 5374 03:31:12,292 --> 03:31:14,094 NOW, AND I THINK WE ALL SHARE 5375 03:31:14,161 --> 03:31:16,597 THAT GOAL BUT JUST HAVEN'T TAKEN 5376 03:31:16,663 --> 03:31:18,032 THE NEXT STEP. 5377 03:31:18,098 --> 03:31:20,868 LET'S DO A PILOT. 5378 03:31:20,934 --> 03:31:21,835 AND TRULY COMBINE OUR RESOURCES 5379 03:31:21,902 --> 03:31:25,339 IN WAYS THAT WORK FOR US, AND I 5380 03:31:25,406 --> 03:31:26,540 DON'T KNOW -- WE NEED TO FIGURE 5381 03:31:26,607 --> 03:31:31,145 OUT HOW TO DO THAT FOR SURE. 5382 03:31:31,211 --> 03:31:35,749 >> I THINK THE COMPLEMENTARY 5383 03:31:35,816 --> 03:31:36,950 HEALTH INSTITUTE, I FORGET THE 5384 03:31:37,017 --> 03:31:38,352 OFFICIAL NAME, THEY HAD THE SAME 5385 03:31:38,419 --> 03:31:46,126 ISSUE AND ENDED UP REVIEWING -- 5386 03:31:46,193 --> 03:31:50,397 I FORGET THE MEDICAL TERM NOW, 5387 03:31:50,464 --> 03:31:54,968 REMOVING IRON FROM BLOOD, WEEKLY 5388 03:31:55,035 --> 03:31:58,272 FOR A YEAR, THEY ARE GETTING 5389 03:31:58,338 --> 03:32:01,341 LIKE A HUGE AMOUNT FROM NHLBI IN 5390 03:32:01,408 --> 03:32:03,277 PARTNERSHIP AND SOME FROM 5391 03:32:03,343 --> 03:32:04,378 ANOTHER INSTITUTE AND THEY HAD 5392 03:32:04,445 --> 03:32:06,113 TO PAY TO GO THROUGH THE SAME 5393 03:32:06,180 --> 03:32:06,346 PROCESS. 5394 03:32:06,413 --> 03:32:09,950 THEY ARE A VERY SMALL INSTITUTE. 5395 03:32:10,017 --> 03:32:13,020 I THINK THEY SAID WE HAVE TO 5396 03:32:13,087 --> 03:32:14,555 IDENTIFY THESE PROTOCOLS VERY 5397 03:32:14,621 --> 03:32:15,456 EARLY, THESE FUNDING 5398 03:32:15,522 --> 03:32:17,724 OPPORTUNITIES VERY EARLY BEFORE 5399 03:32:17,791 --> 03:32:20,794 WE EVEN REVIEW AND SEND IT FOR 5400 03:32:20,861 --> 03:32:22,129 REVIEW. 5401 03:32:22,196 --> 03:32:22,896 I THINK SMALL INSTITUTES OUGHT 5402 03:32:22,963 --> 03:32:28,469 TO TALK ABOUT THIS TOGETHER TOO. 5403 03:32:28,535 --> 03:32:30,104 SOME MORE PATHS MIGHT BE 5404 03:32:30,170 --> 03:32:30,637 DETERMINED. 5405 03:32:30,704 --> 03:32:34,041 >> RICARDO WOULD LIKE TO ASK A 5406 03:32:34,108 --> 03:32:35,809 QUESTION. 5407 03:32:35,876 --> 03:32:36,276 >> THANK YOU. 5408 03:32:36,343 --> 03:32:39,847 WONDERFUL WORK FROM THE WORKING 5409 03:32:39,913 --> 03:32:40,581 GROUP. 5410 03:32:40,647 --> 03:32:43,016 I HAVE A LITTLE CONCERN, FOCUS 5411 03:32:43,083 --> 03:32:45,419 ON RARE DISEASES, MY IMPRESSION, 5412 03:32:45,486 --> 03:32:48,722 I MIGHT BE WRONG, I DIDN'T FIND 5413 03:32:48,789 --> 03:32:50,524 ROOM FOR THAT KIND OF DISEASES, 5414 03:32:50,591 --> 03:32:53,093 I WAS THINKING ABOUT THE NIH 5415 03:32:53,160 --> 03:32:54,728 VERSUS THE INDUSTRY, THEY DOUBLE 5416 03:32:54,795 --> 03:32:56,497 OUR BUDGET OR MORE, RIGHT? 5417 03:32:56,563 --> 03:33:00,634 AND I KNOW THE INSTITUTE THAT 5418 03:33:00,701 --> 03:33:03,137 CAN MATCH SOME INDUSTRIES, NOT 5419 03:33:03,203 --> 03:33:06,740 OUR CASE, UNFORTUNATELY, SO 5420 03:33:06,807 --> 03:33:10,811 ANOTHER WAY TO THINK MAYBE IS TO 5421 03:33:10,878 --> 03:33:12,679 TRY TO DO THINGS THAT INDUSTRY 5422 03:33:12,746 --> 03:33:15,215 IS NOT DOING, ONE GOOD EXAMPLE 5423 03:33:15,282 --> 03:33:17,618 IS RARE DISEASES. 5424 03:33:17,684 --> 03:33:20,254 AND THE EXAMPLES OF DISEASE WITH 5425 03:33:20,320 --> 03:33:22,623 HUGE BURDEN EVEN IF NOT 5426 03:33:22,689 --> 03:33:25,092 PREVALENT AND I THINK THAT 5427 03:33:25,159 --> 03:33:26,793 SHOULD BE INCORPORATED SOMEHOW. 5428 03:33:26,860 --> 03:33:29,429 WE SHOULD NOT MIMIC INDUSTRY. 5429 03:33:29,496 --> 03:33:31,298 WE'LL NOT BE ABLE, AT THE NIAMS. 5430 03:33:31,365 --> 03:33:34,701 I WANT TO PUT THIS ON THE 5431 03:33:34,768 --> 03:33:34,935 TABLEs. 5432 03:33:35,002 --> 03:33:36,336 BUT THANK YOU SO MUCH FOR THE 5433 03:33:36,403 --> 03:33:43,010 DISCUSSION. 5434 03:33:43,076 --> 03:33:43,644 >> ANN? 5435 03:33:43,710 --> 03:33:46,480 WE HAVE A COUPLE MORE MINUTES. 5436 03:33:46,547 --> 03:33:48,248 AND THEN CHUCK. 5437 03:33:48,315 --> 03:33:50,651 ANN AND CHUCK. 5438 03:33:50,717 --> 03:33:51,818 >> I WONDERED, THIS WAS GREAT 5439 03:33:51,885 --> 03:33:53,387 WORK, ONE OF THE THINGS I 5440 03:33:53,453 --> 03:33:54,955 WONDERED ABOUT THOUGH, MAYBE I 5441 03:33:55,022 --> 03:33:57,457 MISSED IT IS, IF YOU HAVE 5442 03:33:57,524 --> 03:34:00,961 SOMEBODY BY SCORE THAT IS 5443 03:34:01,028 --> 03:34:02,262 FUNDABLE, BY PERCENTILE SCORES, 5444 03:34:02,329 --> 03:34:05,766 WILL THOSE BE LOOKED AT FOR 5445 03:34:05,832 --> 03:34:07,301 IMPACT AS WELL? 5446 03:34:07,367 --> 03:34:07,968 >> YES. 5447 03:34:08,035 --> 03:34:09,836 >> SO IT'S NOT JUST THE SELECT 5448 03:34:09,903 --> 03:34:17,945 PAY? 5449 03:34:18,011 --> 03:34:18,812 >> YES. 5450 03:34:18,879 --> 03:34:23,083 >> OKAY, GOOD. 5451 03:34:23,150 --> 03:34:24,184 >> CHUCK AND SHANTHINI. 5452 03:34:24,251 --> 03:34:24,952 >> LET HER ASK. 5453 03:34:25,018 --> 03:34:26,920 >> THANK YOU FOR BRINGING THIS 5454 03:34:26,987 --> 03:34:28,455 REALLY AMAZES WORK FORWARD. 5455 03:34:28,522 --> 03:34:30,857 I WANTED TO SHARE MY 5456 03:34:30,924 --> 03:34:31,558 PERSPECTIVE. 5457 03:34:31,625 --> 03:34:33,060 I'M LAUNCHING A PILOT STUDY 5458 03:34:33,126 --> 03:34:34,728 RIGHT NOW, A PILOT CLINICAL 5459 03:34:34,795 --> 03:34:36,663 TRIAL, AND I THINK ONE OF THE 5460 03:34:36,730 --> 03:34:38,632 CHALLENGES THAT I'M DEALING WITH 5461 03:34:38,699 --> 03:34:41,702 IS DIVERSITY BECAUSE I'M AT ONE 5462 03:34:41,768 --> 03:34:44,071 PLACE, AND SO EFFORTS TO SUPPORT 5463 03:34:44,137 --> 03:34:45,172 DIVERSITY AND RECRUITMENT, 5464 03:34:45,239 --> 03:34:54,181 WHETHER IT'S THROUGH A NETWORK 5465 03:34:54,248 --> 03:34:56,316 OR LEVERAGING THE CTSIs, WOULD 5466 03:34:56,383 --> 03:34:57,884 BE HELPFUL, MAYBE ESTABLISHED 5467 03:34:57,951 --> 03:34:59,653 INVESTIGATORS JUST STARTING OUT 5468 03:34:59,720 --> 03:35:00,821 IN CLINICAL TRIALS. 5469 03:35:00,887 --> 03:35:02,789 I WANTED TO EMPHASIZE THAT. 5470 03:35:02,856 --> 03:35:04,024 >> COMPLETELY AGREE. 5471 03:35:04,091 --> 03:35:05,759 THANK YOU SO MUCH. 5472 03:35:05,826 --> 03:35:06,093 CHUCK? 5473 03:35:06,159 --> 03:35:08,729 >> I GET THE LAST WORD. 5474 03:35:08,795 --> 03:35:11,765 I WANT TO THANK JOAN FOR THAT 5475 03:35:11,832 --> 03:35:12,766 GREAT PRESENTATION. 5476 03:35:12,833 --> 03:35:14,701 WHEN WE WORKED ON SLIDES, WOW, 5477 03:35:14,768 --> 03:35:16,603 WHAT IS SHE GOES TO SAY AFTER 5478 03:35:16,670 --> 03:35:19,740 SHE CUT THEM ALL DOWN, BUT THAT 5479 03:35:19,806 --> 03:35:20,040 WAS AMAZING. 5480 03:35:20,107 --> 03:35:21,074 I THANK EVERYBODY ELSE ON THE 5481 03:35:21,141 --> 03:35:22,709 WORK GROUP ON THIS CALL OR IN 5482 03:35:22,776 --> 03:35:24,344 THE ROOM. 5483 03:35:24,411 --> 03:35:26,213 AND ESPECIALLY BOB. 5484 03:35:26,280 --> 03:35:28,181 IT'S BEEN A LONG HAUL. 5485 03:35:28,248 --> 03:35:30,450 SEEMS LIKE WE STARTED YESTERDAY 5486 03:35:30,517 --> 03:35:31,251 AND FINISHED TODAY. 5487 03:35:31,318 --> 03:35:33,954 IT WAS A VERY GOOD GROUP. 5488 03:35:34,021 --> 03:35:36,156 ONE OF THE BETTER ONES I'VE EVER 5489 03:35:36,223 --> 03:35:37,457 BEEN ON. 5490 03:35:37,524 --> 03:35:41,862 I WILL MENTION TWO QUICK THINGS. 5491 03:35:41,928 --> 03:35:43,563 LOW-HANGING FRUIT, SO JUST FOR 5492 03:35:43,630 --> 03:35:44,831 PERSPECTIVE, THIS IS THE SAME 5493 03:35:44,898 --> 03:35:47,501 GROUP WHEN WE STARTED SAID GET 5494 03:35:47,567 --> 03:35:48,468 RID OF THE R 34. 5495 03:35:48,535 --> 03:35:50,237 BY THE TIME WE GOT TO THIS POINT 5496 03:35:50,304 --> 03:35:53,073 THEY SAID BRING IT BACK. 5497 03:35:53,140 --> 03:35:57,077 THAT'S HOW MANY DISCUSSIONS AND 5498 03:35:57,144 --> 03:35:58,745 WAYS -- IT'S HOW WE EVOLVED, WE 5499 03:35:58,812 --> 03:36:00,213 MADE RASH DECISIONS, CAME BACK 5500 03:36:00,280 --> 03:36:02,416 WITH A WAY -- IT'S NOT RIGHT. 5501 03:36:02,482 --> 03:36:03,917 I RESPECT THAT, WITH THE WAY 5502 03:36:03,984 --> 03:36:12,025 THEY MADE THEIR DECISIONS AND 5503 03:36:12,092 --> 03:36:12,659 RECOMMENDATIONS. 5504 03:36:12,726 --> 03:36:17,064 THE OTHER THING I'LL SAY WE JUST 5505 03:36:17,130 --> 03:36:19,499 PUBLISHED LAST WEEK, MAY 23, 5506 03:36:19,566 --> 03:36:21,068 UG3/UH3 NOFO. 5507 03:36:21,134 --> 03:36:22,235 A COUPLE THINGS NOT HIGHLIGHTED, 5508 03:36:22,302 --> 03:36:25,272 THERE'S NO CAP ON THE UH3, THE 5509 03:36:25,339 --> 03:36:29,876 THRILL -- TRIAL IS UNCAPPED. 5510 03:36:29,943 --> 03:36:32,179 SECOND WE TALKED ALREADY TODAY 5511 03:36:32,245 --> 03:36:34,147 AT LENGTH BEFORE LUNCH ABOUT 5512 03:36:34,214 --> 03:36:34,581 LIVED EXPERIENCE. 5513 03:36:34,648 --> 03:36:36,883 THAT IS NOW A REQUIREMENT FOR A 5514 03:36:36,950 --> 03:36:39,953 PLAN TO INCLUDE PATIENTS WITH 5515 03:36:40,020 --> 03:36:41,621 LIVED EXPERIENCE IN THE TRIAL, 5516 03:36:41,688 --> 03:36:43,590 IT'S GOING TO BE UP TO THE P.I. 5517 03:36:43,657 --> 03:36:44,658 HOW WE DECIDE TO INCORPORATE 5518 03:36:44,725 --> 03:36:46,226 THESE PEOPLE BUT IT'S A 5519 03:36:46,293 --> 03:36:47,394 REQUIREMENT THEY HAVE TO HAVE A 5520 03:36:47,461 --> 03:36:49,930 PLAN TO DO SO. 5521 03:36:49,996 --> 03:36:51,231 SO, EVERYTHING THAT THE WORK 5522 03:36:51,298 --> 03:36:55,302 GROUP HAS SAID, I'VE LISTENED 5523 03:36:55,369 --> 03:36:56,803 HARD TO AND WE'VE TRIED TO 5524 03:36:56,870 --> 03:36:59,339 INCORPORATE AS MANY AS WE CAN IN 5525 03:36:59,406 --> 03:37:01,208 NOFOs AND WILL CONTINUE TO DO 5526 03:37:01,274 --> 03:37:01,875 SO. 5527 03:37:01,942 --> 03:37:03,744 AGAIN, THANK YOU, JOAN, FOR A 5528 03:37:03,810 --> 03:37:09,082 GREAT PRESENTATION AND THANK YOU 5529 03:37:09,149 --> 03:37:10,183 TO THE WORK GROUP. 5530 03:37:10,250 --> 03:37:19,126 >> I LIKE ALL YOUR 5531 03:37:19,192 --> 03:37:20,427 RECOMMENDATIONS. 5532 03:37:20,494 --> 03:37:20,694 >> OKAY. 5533 03:37:20,761 --> 03:37:25,732 THANK YOU. 5534 03:37:25,799 --> 03:37:27,367 WE WILL BE CIRCLING BACK WILL 5535 03:37:27,434 --> 03:37:28,935 RARE DISEASE ISSUE TOO. 5536 03:37:29,002 --> 03:37:29,569 WHAT'S NEXT? 5537 03:37:29,636 --> 03:37:31,538 DARREN, PASSING TO YOU NOW. 5538 03:37:31,605 --> 03:37:39,012 >> CAN WE HAVE THE FIRST CONCEPT 5539 03:37:39,079 --> 03:37:44,017 CLEARANCE SLIDE? 5540 03:37:44,084 --> 03:37:47,421 OKAY, THANK YOU. 5541 03:37:47,487 --> 03:37:47,721 NEXT SLIDE. 5542 03:37:47,788 --> 03:37:50,824 LET ME -- BEFORE WE GET INTO THE 5543 03:37:50,891 --> 03:37:52,893 CONCEPT I WANTED TO MENTION WHAT 5544 03:37:52,959 --> 03:37:55,295 OUR PROCESS IS FOR CONCEPT 5545 03:37:55,362 --> 03:37:56,830 CLEARANCE, WHAT IT MEANS. 5546 03:37:56,897 --> 03:37:59,199 ESPECIALLY WE HAVE SOME NEW 5547 03:37:59,266 --> 03:37:59,766 FOLKS HERE. 5548 03:37:59,833 --> 03:38:01,635 THE WAY THE CONCEPT CLEARANCE 5549 03:38:01,701 --> 03:38:03,804 WORKS AT NIH AND WE IMPLEMENT IT 5550 03:38:03,870 --> 03:38:06,640 HERE AT NIAMS IS BEFORE WE COME 5551 03:38:06,706 --> 03:38:08,642 OUT WITH A LARGE FUNDING 5552 03:38:08,708 --> 03:38:10,610 OPPORTUNITY, CALL THEM NOFOs 5553 03:38:10,677 --> 03:38:12,379 NOW, WE NEED COUNCIL APPROVAL. 5554 03:38:12,446 --> 03:38:14,014 WE ALSO NEED AN OPTION FOR 5555 03:38:14,080 --> 03:38:15,982 PUBLIC COMMENT. 5556 03:38:16,049 --> 03:38:18,285 THAT'S WHAT WE'RE ASKING COUNCIL 5557 03:38:18,351 --> 03:38:19,686 FOR. 5558 03:38:19,753 --> 03:38:23,990 FOR TODAY'S CONCEPT CLEARANCE, 5559 03:38:24,057 --> 03:38:26,259 DR. MARY GARCIA-CAZARIN IS 5560 03:38:26,326 --> 03:38:27,294 INTRODUCE IT BROADLY SPEAKING. 5561 03:38:27,360 --> 03:38:28,795 WE'LL HAVE TIME FOR DISCUSSION 5562 03:38:28,862 --> 03:38:30,764 AND QUESTIONS BUT COMING BACK AT 5563 03:38:30,831 --> 03:38:32,165 SEPTEMBER COUNCIL NOT FOR 5564 03:38:32,232 --> 03:38:34,134 CONCEPT CLEARANCE BUT TO GET 5565 03:38:34,201 --> 03:38:35,035 YOUR INSIGHTS INTO MAYBE CHANGES 5566 03:38:35,101 --> 03:38:36,803 WE'RE GOING TO DO TO THE 5567 03:38:36,870 --> 03:38:37,037 PROGRAM. 5568 03:38:37,103 --> 03:38:37,971 SO I DIDN'T WANT YOU TO THINK 5569 03:38:38,038 --> 03:38:39,439 THIS WAS THE ONLY CHANCE YOU'RE 5570 03:38:39,506 --> 03:38:41,508 GOING TO HAVE TO WEIGH IN ON 5571 03:38:41,575 --> 03:38:42,509 THIS CONCEPT. 5572 03:38:42,576 --> 03:38:43,410 GOING FORWARD WE'LL TRY TO DO 5573 03:38:43,477 --> 03:38:45,979 THIS WITH ALL OF OUR CONCEPTS SO 5574 03:38:46,046 --> 03:38:49,616 WE CAN HAVE A FULLER DISCUSSION 5575 03:38:49,683 --> 03:38:50,951 AMONGST THE COUNCIL. 5576 03:38:51,017 --> 03:38:54,187 WITH THAT I'LL TURN IT OVER TO 5577 03:38:54,254 --> 03:38:54,521 MARY. 5578 03:38:54,588 --> 03:38:56,823 >> HELLO, GOOD AFTERNOON. 5579 03:38:56,890 --> 03:39:00,093 I'M HERE TO SEEK CONCEPT 5580 03:39:00,160 --> 03:39:02,629 CLEARANCE FOR THE THREE TYPES OF 5581 03:39:02,696 --> 03:39:04,030 RESOURCE CENTERS THAT THIS HAS 5582 03:39:04,097 --> 03:39:06,333 BEEN A LONGSTANDING PROGRAM OF 5583 03:39:06,399 --> 03:39:11,371 NIAMS, IN THE FOLLOWING AREAS. 5584 03:39:11,438 --> 03:39:15,108 RHEUMATIC DISEASE RESEARCH, SKIN 5585 03:39:15,175 --> 03:39:18,245 BIOLOGY AND DISEASES, AND BONE, 5586 03:39:18,311 --> 03:39:19,579 MUSCLE, ORTHOPEDIC RESEARCH. 5587 03:39:19,646 --> 03:39:20,814 CENTERS PROVIDED GREAT RESOURCES 5588 03:39:20,881 --> 03:39:21,314 FOR INVESTIGATORS. 5589 03:39:21,381 --> 03:39:24,718 I THINK ONE OF THE VERY 5590 03:39:24,784 --> 03:39:28,688 IMPORTANT OUTCOMES OF THE 5591 03:39:28,755 --> 03:39:29,756 RESOURCE CENTERS, TEAM SCIENCE, 5592 03:39:29,823 --> 03:39:33,593 I THINK THIS HAS ALLOWED FOR 5593 03:39:33,660 --> 03:39:34,995 COLLABORATIONS WITHIN 5594 03:39:35,061 --> 03:39:35,795 INSTITUTIONS AND DIFFERENT 5595 03:39:35,862 --> 03:39:36,096 DEPARTMENTS. 5596 03:39:36,162 --> 03:39:39,533 AND ALSO THIS HAS ALLOWED FOR 5597 03:39:39,599 --> 03:39:41,935 COLLABORATION ACROSS DIFFERENT 5598 03:39:42,002 --> 03:39:44,237 CENTERS AND OTHER INVESTIGATORS. 5599 03:39:44,304 --> 03:39:45,539 SO THAT IS A VERY IMPORTANT 5600 03:39:45,605 --> 03:39:48,375 HIGHLIGHT OF THE PROGRAM WE 5601 03:39:48,441 --> 03:39:51,144 WOULD LIKE TO CONTINUE. 5602 03:39:51,211 --> 03:39:55,916 THE OVERALL GOAL OF THE NIAMS 5603 03:39:55,982 --> 03:39:58,218 RESOURCE CENTERS IS TO PROMOTE 5604 03:39:58,285 --> 03:40:00,387 COLLABORATION INTERACTION AMONG 5605 03:40:00,453 --> 03:40:03,123 INVESTIGATORS THAT CONDUCT BASIC 5606 03:40:03,189 --> 03:40:06,092 SCIENCE OR CLINICAL SCIENCE, 5607 03:40:06,159 --> 03:40:07,294 CLINICAL RESEARCH. 5608 03:40:07,360 --> 03:40:09,062 WE ALSO -- ONE IMPORTANT THING 5609 03:40:09,129 --> 03:40:11,798 FOR RESOURCE CENTERS, WE HOPE 5610 03:40:11,865 --> 03:40:19,005 THAT THEY EXPAND THEIR OUTREACH, 5611 03:40:19,072 --> 03:40:21,608 AND ANOTHER THING WE DON'T WANT 5612 03:40:21,675 --> 03:40:22,609 TO DUPLICATE RESOURCES. 5613 03:40:22,676 --> 03:40:26,112 SO WE WANT TO MAKE SURE 5614 03:40:26,179 --> 03:40:27,447 INSTITUTIONS ARE PROVIDING 5615 03:40:27,514 --> 03:40:29,082 DIFFERENT SERVICES, SO THEREFORE 5616 03:40:29,149 --> 03:40:32,919 WE REALLY DON'T WANT TO HAVE 5617 03:40:32,986 --> 03:40:34,688 CENTERS THAT HAVE DUPLICATING 5618 03:40:34,754 --> 03:40:35,455 EFFORTS. 5619 03:40:35,522 --> 03:40:37,757 THE OVERALL OR GENERAL STRUCTURE 5620 03:40:37,824 --> 03:40:48,301 OF THE CENTERS HAVE INCLUDED 5621 03:40:48,668 --> 03:40:49,703 ADMINISTRATIVE CORE, SOME OF THE 5622 03:40:49,769 --> 03:40:52,005 CENTERS HAVE ONE OR MORE 5623 03:40:52,072 --> 03:40:53,673 RESOURCE CORES, AND ALSO THEY 5624 03:40:53,740 --> 03:40:55,942 HAVE HAD THE OPTION TO HAVE 5625 03:40:56,009 --> 03:40:57,777 PILOT AND FEASIBILITY PROJECTS. 5626 03:40:57,844 --> 03:40:58,778 THE PILOT AND FEASIBILITY 5627 03:40:58,845 --> 03:41:01,314 PROJECTS HAVE BEEN A GREAT 5628 03:41:01,381 --> 03:41:05,785 OPPORTUNITY TO FIELD SOME 5629 03:41:05,852 --> 03:41:06,886 SCIENTIFIC GAPS, INSTITUTIONS 5630 03:41:06,953 --> 03:41:09,956 ARE USING THESE PROJECTS TO 5631 03:41:10,023 --> 03:41:11,958 ACTUALLY BRING NEW INVESTIGATORS 5632 03:41:12,025 --> 03:41:16,229 INTO THE FIELD BY ALLOWING 5633 03:41:16,296 --> 03:41:18,064 POSTDOCS OR JUNIOR INVESTIGATORS 5634 03:41:18,131 --> 03:41:21,468 INTO PILOT AND FEASIBILITY 5635 03:41:21,534 --> 03:41:22,068 PROJECT. 5636 03:41:22,135 --> 03:41:23,003 EACH INSTITUTION DECIDES HOW TO 5637 03:41:23,069 --> 03:41:26,272 COMPETE FOR THE PILOT AND 5638 03:41:26,339 --> 03:41:27,040 FEASIBILITY PROJECTS, WE 5639 03:41:27,107 --> 03:41:28,041 CONSIDER THIS AN IMPORTANT PART 5640 03:41:28,108 --> 03:41:29,342 OF THE RESOURCE CENTERS. 5641 03:41:29,409 --> 03:41:32,078 SO I THINK THAT'S ALL I HAVE. 5642 03:41:32,145 --> 03:41:33,713 IN GENERAL WE'RE JUST SEEKING, 5643 03:41:33,780 --> 03:41:37,751 YOU KNOW, CLEARANCE FOR THESE 5644 03:41:37,817 --> 03:41:41,921 CONCEPTS FOR NIAMS TO CONTINUE 5645 03:41:41,988 --> 03:41:42,889 SPONSORING THESE RESOURCE 5646 03:41:42,956 --> 03:41:43,123 CENTERS. 5647 03:41:43,189 --> 03:41:43,957 >> THANK YOU. 5648 03:41:44,024 --> 03:41:47,527 BEFORE I CALL FOR A VOTE, I'LL 5649 03:41:47,594 --> 03:41:51,331 OPEN UP FOR DISCUSSION. 5650 03:41:51,398 --> 03:41:53,066 ANY QUESTIONS? 5651 03:41:53,133 --> 03:41:53,366 SURE, CHRIS. 5652 03:41:53,433 --> 03:41:55,702 >> HI, THANK YOU SO MUCH. 5653 03:41:55,769 --> 03:41:57,570 I APOLOGIZE, THIS IS A RATHER 5654 03:41:57,637 --> 03:41:58,638 IGNORANT QUESTION. 5655 03:41:58,705 --> 03:42:02,275 IS THIS KIND OF SIMILAR TO THE 5656 03:42:02,342 --> 03:42:03,610 P30 MECHANISM OR PERHAPS CAN 5657 03:42:03,677 --> 03:42:05,478 COMPARE AND CONTRAST WHAT THIS 5658 03:42:05,545 --> 03:42:08,715 CONCEPT IS DOING IF IT'S NOT 5659 03:42:08,782 --> 03:42:10,984 IDENTICAL TO THAT, IS IT A 5660 03:42:11,051 --> 03:42:11,518 SEPARATE ENTITY? 5661 03:42:11,584 --> 03:42:13,820 >> NO, IT IS A P30 MECHANISM. 5662 03:42:13,887 --> 03:42:16,890 >> OKAY, SORRY ABOUT THAT. 5663 03:42:16,956 --> 03:42:17,557 THANK YOU. 5664 03:42:17,624 --> 03:42:21,628 >> WE'D LOVE TO HEAR YOUR 5665 03:42:21,695 --> 03:42:21,895 COMMENTS. 5666 03:42:21,961 --> 03:42:24,464 >> YES, THIS HAS BEEN A P30. 5667 03:42:24,531 --> 03:42:25,799 WHAT WE'RE ASKING FOR PERMISSION 5668 03:42:25,865 --> 03:42:29,502 HERE IS TO LOOK AT THIS AND 5669 03:42:29,569 --> 03:42:30,870 CONSIDER REISSUING THIS OR 5670 03:42:30,937 --> 03:42:32,472 MAKING SOME CHANGES TO IT. 5671 03:42:32,539 --> 03:42:34,874 SO I GUESS THERE COULD BE A 5672 03:42:34,941 --> 03:42:36,509 POTENTIAL THAT WE MIGHT EXPAND 5673 03:42:36,576 --> 03:42:39,045 THE MECHANISM OR DO SOMETHING. 5674 03:42:39,112 --> 03:42:41,214 BUT THIS IS BASICALLY THE 5675 03:42:41,281 --> 03:42:44,417 RESOURCE CENTERS ARE THE P30s. 5676 03:42:44,484 --> 03:42:46,386 >> THAT'S VERY HELPFUL. 5677 03:42:46,453 --> 03:42:47,153 THANK YOU. 5678 03:42:47,220 --> 03:42:51,858 I'M A BIG FAN OF THEM. 5679 03:42:51,925 --> 03:42:52,125 >> YES. 5680 03:42:52,192 --> 03:42:53,727 >> SEVERAL OTHER COLLEAGUES OF 5681 03:42:53,793 --> 03:42:56,663 MINE ACROSS THE COUNTRY ARE 5682 03:42:56,730 --> 03:42:58,832 JUNIOR FACULTY AND LEVERAGED 5683 03:42:58,898 --> 03:43:01,601 RESOURCES OF P30s TO A GREAT 5684 03:43:01,668 --> 03:43:07,073 DEGREE. 5685 03:43:07,140 --> 03:43:08,908 >> ANY OTHER COMMENTS? 5686 03:43:08,975 --> 03:43:11,978 >> SEEING NONE, I'M GLAD TO HEAR 5687 03:43:12,045 --> 03:43:13,813 SOMEBODY REALLY APPRECIATES OUR 5688 03:43:13,880 --> 03:43:16,049 CURRENT P30s, I'LL MAKE A 5689 03:43:16,116 --> 03:43:18,451 MOTION WE APPROVE THIS CONCEPT 5690 03:43:18,518 --> 03:43:20,320 FOR FURTHER DEVELOPMENT BY THE 5691 03:43:20,386 --> 03:43:20,587 INSTITUTE. 5692 03:43:20,653 --> 03:43:22,388 DO I HAVE A SECOND? 5693 03:43:22,455 --> 03:43:24,457 SECOND, THANK YOU. 5694 03:43:24,524 --> 03:43:26,559 AND NOW I'LL CALL FOR ANYBODY 5695 03:43:26,626 --> 03:43:28,328 OPPOSED TO THIS MOTION, PLEASE 5696 03:43:28,394 --> 03:43:33,433 RAISE YOUR HAND OR SPEAK UP. 5697 03:43:33,500 --> 03:43:34,634 SEEING OR HEARING NONE, THIS 5698 03:43:34,701 --> 03:43:36,503 MOTION HAS BEEN APPROVED TO GO 5699 03:43:36,569 --> 03:43:37,270 FORWARD. 5700 03:43:37,337 --> 03:43:39,005 THANK YOU VERY MUCH, MARY. 5701 03:43:39,072 --> 03:43:41,207 >> IF THEY WANT TO SUBMIT 5702 03:43:41,274 --> 03:43:42,976 ADDITIONAL COMMENTS, THEY CAN DO 5703 03:43:43,042 --> 03:43:43,743 THAT, RIGHT? 5704 03:43:43,810 --> 03:43:49,616 >> YES, YOU CAN ALWAYS SUBMIT 5705 03:43:49,682 --> 03:43:50,416 ADDITIONAL COMMENTS AFTER 5706 03:43:50,483 --> 03:43:58,658 COUNCIL. 5707 03:44:05,465 --> 03:44:13,940 >> SO WE ARE AHEAD OF SCHEDULE. 5708 03:44:14,007 --> 03:44:15,341 WE'LL KEEP GOING AND COVER THE 5709 03:44:15,408 --> 03:44:17,443 FINAL SESSION OF THE OPEN 5710 03:44:17,510 --> 03:44:19,078 SESSION PRESENTED BY DR. 5711 03:44:19,145 --> 03:44:24,984 STEPHANIE BURROWS, CHIEF OF OUR 5712 03:44:25,051 --> 03:44:26,386 SCIENTIFIC PLANNING, POLICY, AND 5713 03:44:26,452 --> 03:44:27,587 ANALYSIS BRANCH TALKING ABOUT 5714 03:44:27,654 --> 03:44:29,689 OUR STRATEGIC PLAN, THE DRAFT 5715 03:44:29,756 --> 03:44:35,161 PLAN, I SAW THAT JANELLE DRUGIN 5716 03:44:35,228 --> 03:44:45,438 IS ONLINE, STEPHANIE WILL TALK 5717 03:44:45,505 --> 03:44:46,773 ABOUT THIS, WE'RE EAGER TO HEAR 5718 03:44:46,840 --> 03:44:47,473 AN UPDATE. 5719 03:44:47,540 --> 03:44:50,143 FOR THOSE THAT READ THE DRAFT 5720 03:44:50,210 --> 03:44:52,879 PLAN, HERE AND MOVING FORWARD WE 5721 03:44:52,946 --> 03:44:54,414 WELCOME AND ENCOURAGE YOUR 5722 03:44:54,480 --> 03:44:55,181 INPUT. 5723 03:44:55,248 --> 03:44:56,583 >> THANK YOU, DR. CRISWELL. 5724 03:44:56,649 --> 03:44:58,151 GOOD AFTERNOON. 5725 03:44:58,218 --> 03:45:00,019 AGAIN, I'M STEPHANIE BURROWS, 5726 03:45:00,086 --> 03:45:02,422 CHIEF OF OUR INSTITUTE 5727 03:45:02,488 --> 03:45:04,924 SCIENTIFIC POLICY PLANNING AND 5728 03:45:04,991 --> 03:45:05,592 ANALYSIS BRANCH. 5729 03:45:05,658 --> 03:45:06,826 AS WAS MENTIONED THIS MORNING 5730 03:45:06,893 --> 03:45:09,863 THE INSTITUTE IS IN THE PROCESS 5731 03:45:09,929 --> 03:45:12,699 OF DEVELOPING ITS STRATEGIC PLAN 5732 03:45:12,765 --> 03:45:14,667 FOR 2025-2029, AND MY BRANCH 5733 03:45:14,734 --> 03:45:15,835 ORGANIZES THIS PROCESS. 5734 03:45:15,902 --> 03:45:17,704 SO I'M DELIGHTED TO HAVE THE 5735 03:45:17,770 --> 03:45:19,072 OPPORTUNITY TO TELL YOU ABOUT 5736 03:45:19,138 --> 03:45:22,542 OUR PROGRESS TO DATE AND 5737 03:45:22,609 --> 03:45:23,977 HIGHLIGHT NEXT STEPS. 5738 03:45:24,043 --> 03:45:24,177 OKAY. 5739 03:45:24,244 --> 03:45:26,379 WHY SHOULD NIAMS HAVE A 5740 03:45:26,446 --> 03:45:27,380 STRATEGIC PLAN? 5741 03:45:27,447 --> 03:45:29,115 FIRST, CONGRESS REQUIRES NIH 5742 03:45:29,182 --> 03:45:32,852 INSTITUTES AND CENTERS TO HAVE A 5743 03:45:32,919 --> 03:45:33,219 STRATEGIC PLAN. 5744 03:45:33,286 --> 03:45:35,021 BUT AS IMPORTANT, THIS PLAN IS A 5745 03:45:35,088 --> 03:45:36,689 PUBLIC STATEMENT OF THE 5746 03:45:36,756 --> 03:45:37,657 INSTITUTE'S INTERESTS AND SINCE 5747 03:45:37,724 --> 03:45:38,892 IT'S THE FIRST PLAN WE'RE GOING 5748 03:45:38,958 --> 03:45:47,634 TO BE ISSUING UNDER DR. 5749 03:45:47,700 --> 03:45:48,935 CRISWELL'S LEADERSHIP WE IMAGINE 5750 03:45:49,002 --> 03:45:50,270 THE COMMUNITY WILL LOOK CLOSELY. 5751 03:45:50,336 --> 03:45:52,138 WE WANT TO MAKE SURE IT COVERS 5752 03:45:52,205 --> 03:45:54,741 OUR BROAD MISSION AND ALSO 5753 03:45:54,807 --> 03:45:56,175 REFLECTS THE INTERESTS OF OUR 5754 03:45:56,242 --> 03:45:57,343 RESEARCHERS AND COALITION 5755 03:45:57,410 --> 03:45:57,577 MEMBERS. 5756 03:45:57,644 --> 03:46:00,013 SO THE PLAN ALSO SERVES AS 5757 03:46:00,079 --> 03:46:02,315 INTERNAL REFERENCE FOR STAFF AT 5758 03:46:02,382 --> 03:46:08,554 ALL LEVELS AT THE INSTITUTE, ALL 5759 03:46:08,621 --> 03:46:08,855 COMPONENTS. 5760 03:46:08,922 --> 03:46:11,190 THIS SHOWS OVERVIEW OF THE STEPS 5761 03:46:11,257 --> 03:46:12,458 AND DEVELOPMENT OF THE STRATEGIC 5762 03:46:12,525 --> 03:46:12,792 PLAN. 5763 03:46:12,859 --> 03:46:15,328 I'M GOING TO ELABORATE ON SOME 5764 03:46:15,395 --> 03:46:18,064 OF THESE IN LATER SLIDES BUT THE 5765 03:46:18,131 --> 03:46:19,365 TAKEHOME MESSAGE IS WE'RE ON 5766 03:46:19,432 --> 03:46:20,967 TARGET TO HAVE YOU DISCUSS THE 5767 03:46:21,034 --> 03:46:26,072 FINAL VERSION OF THE PLAN AT THE 5768 03:46:26,139 --> 03:46:27,206 SEPTEMBER MEETING AND PUBLISH BY 5769 03:46:27,273 --> 03:46:33,379 END OF THE CALENDAR YEAR. 5770 03:46:33,446 --> 03:46:34,714 WE BEGAN IN 2022 WITH REQUEST 5771 03:46:34,781 --> 03:46:38,418 FOR INFORMATION, ASKING TWO 5772 03:46:38,484 --> 03:46:38,685 QUESTIONS. 5773 03:46:38,751 --> 03:46:40,620 ONE ABOUT CROSS-CUTTING THEMATIC 5774 03:46:40,687 --> 03:46:41,955 RESEARCH OPPORTUNITIES, THE 5775 03:46:42,021 --> 03:46:43,556 OTHER ABOUT BOLD ASPIRATIONS THE 5776 03:46:43,623 --> 03:46:44,457 INSTITUTE COULD PURCHASE SEE 5777 03:46:44,524 --> 03:46:45,858 OVER FIVE YEARS. 5778 03:46:45,925 --> 03:46:47,961 WE RECEIVED 46 RESPONSES, MOST 5779 03:46:48,027 --> 03:46:49,595 WERE FROM INDIVIDUALS AT 5780 03:46:49,662 --> 03:46:51,230 UNIVERSITIES OR HOSPITALS BUT 5781 03:46:51,297 --> 03:46:56,703 SOME WERE FROM PROFESSIONAL AND 5782 03:46:56,769 --> 03:46:57,670 VOLUNTARY ORGANIZATIONS. 5783 03:46:57,737 --> 03:47:00,740 SO REALIZING WE NEEDED TO HAVE A 5784 03:47:00,807 --> 03:47:02,375 MORE IN-DEPTH DISCUSSION OF SOME 5785 03:47:02,442 --> 03:47:03,476 IDEAS BUBBLING UP FOR 5786 03:47:03,543 --> 03:47:04,377 CROSS-CUTTING THEMES IN 5787 03:47:04,444 --> 03:47:08,314 SEPTEMBER OF LAST YEAR WE HELD A 5788 03:47:08,381 --> 03:47:09,415 THREE-DAY VIRTUAL IDEA 5789 03:47:09,482 --> 03:47:10,516 GENERATION MEETING. 5790 03:47:10,583 --> 03:47:12,885 AND THE IDEA HERE WAS TO CROWD 5791 03:47:12,952 --> 03:47:14,320 SOURCE ADDITIONAL IDEAS FOR 5792 03:47:14,387 --> 03:47:15,855 CROSS-CUTTING THEMES AND DISCUSS 5793 03:47:15,922 --> 03:47:17,590 THEM IN MORE DETAIL THAN WE 5794 03:47:17,657 --> 03:47:20,093 COULD THROUGH REQUEST FOR 5795 03:47:20,159 --> 03:47:20,393 INFORMATION. 5796 03:47:20,460 --> 03:47:21,761 SO WE BROUGHT TOGETHER 5797 03:47:21,828 --> 03:47:25,798 REPRESENTATIVES FROM ACROSS THE 5798 03:47:25,865 --> 03:47:26,699 INSTITUTE'S BROAD INTERESTS TO 5799 03:47:26,766 --> 03:47:30,169 INTERACT AND TO BUILD ON ONE 5800 03:47:30,236 --> 03:47:31,070 ANOTHER'S IDEAS. 5801 03:47:31,137 --> 03:47:33,673 SO, PARTICIPANTS, SOME ARE 5802 03:47:33,740 --> 03:47:35,742 PICTURED HERE, INCLUDED 5803 03:47:35,808 --> 03:47:37,076 RESEARCHERS FROM VARIOUS 5804 03:47:37,143 --> 03:47:40,346 BACKGROUNDS AND CAREER STAGES, 5805 03:47:40,413 --> 03:47:41,881 NIAMS COUNCIL MEMBERS, 5806 03:47:41,948 --> 03:47:43,016 REPRESENTATIVES OF PROFESSIONAL 5807 03:47:43,082 --> 03:47:44,884 AND VOLUNTARY ORGANIZATIONS AS 5808 03:47:44,951 --> 03:47:47,954 WELL AS REPRESENTATIVES FROM 5809 03:47:48,021 --> 03:47:49,689 OTHER FEDERAL AGENCIES AND NIH 5810 03:47:49,756 --> 03:47:50,890 INSTITUTES, CENTERS AND OFFICES. 5811 03:47:50,957 --> 03:47:53,326 I KNOW SEVERAL OF YOU WERE 5812 03:47:53,393 --> 03:47:57,797 INVOLVED IN THIS MEETING, AND WE 5813 03:47:57,864 --> 03:47:58,464 GREATLY APPRECIATE YOUR 5814 03:47:58,531 --> 03:48:00,967 PARTICIPATION. 5815 03:48:01,034 --> 03:48:02,402 SO, AFTER THAT MEETING WE TOOK 5816 03:48:02,468 --> 03:48:04,570 THE IDEAS THAT HAD EMERGED AS 5817 03:48:04,637 --> 03:48:05,671 WELL AS INFORMATION WE HAD 5818 03:48:05,738 --> 03:48:07,740 GOTTEN FROM THE FIRST REQUEST 5819 03:48:07,807 --> 03:48:09,075 FOR INFORMATION AND CONSOLIDATED 5820 03:48:09,142 --> 03:48:11,144 INTO NINE THEMES. 5821 03:48:11,210 --> 03:48:12,578 WITH CORRESPONDING BOLD 5822 03:48:12,645 --> 03:48:15,214 ASPIRATIONS. 5823 03:48:15,281 --> 03:48:16,749 WE ISSUED A SECOND REQUEST OPEN 5824 03:48:16,816 --> 03:48:19,786 FOR SIX WEEKS AND RECEIVED MORE 5825 03:48:19,852 --> 03:48:21,454 THAN TWO DOZEN RESPONSES, NINE 5826 03:48:21,521 --> 03:48:22,989 FROM COALITION MEMBER 5827 03:48:23,056 --> 03:48:23,423 ORGANIZATIONS. 5828 03:48:23,489 --> 03:48:25,058 WE GOT SOME ADDITIONAL 5829 03:48:25,124 --> 03:48:26,259 SUGGESTIONS FOR CROSS-CUTTING 5830 03:48:26,325 --> 03:48:29,328 THEMES OR BOLD ASPIRATIONS BUT 5831 03:48:29,395 --> 03:48:30,630 MOSTLY RESPONDENTS WERE FOCUSED 5832 03:48:30,696 --> 03:48:35,668 ON FINE TUNING THE IDEAS THAT WE 5833 03:48:35,735 --> 03:48:41,374 PRESENTED IN THAT RFI. 5834 03:48:41,441 --> 03:48:41,574 OKAY. 5835 03:48:41,641 --> 03:48:43,176 SO, THE PRIORITIES THAT ARE 5836 03:48:43,242 --> 03:48:44,644 GOING INTO THE STRATEGIC PLAN 5837 03:48:44,710 --> 03:48:46,846 REFLECT CURRENT VIEWS OF THE 5838 03:48:46,913 --> 03:48:48,514 PATIENT AND RESEARCH COMMUNITY 5839 03:48:48,581 --> 03:48:50,783 TODAY, BUT WE RECOGNIZE SCIENCE 5840 03:48:50,850 --> 03:48:52,385 CHANGES QUICKLY. 5841 03:48:52,452 --> 03:48:56,155 SO THE INSTITUTE NEEDS TO REMAIN 5842 03:48:56,222 --> 03:48:57,590 RECEPTIVE TO FUNDING THE MOST 5843 03:48:57,657 --> 03:48:58,991 PROMISING APPLICATIONS EVEN IF 5844 03:48:59,058 --> 03:49:02,728 TOPICS MOVED ON BEYOND THE 5845 03:49:02,795 --> 03:49:05,264 TOPICS OR PRIORITIES WE'RE 5846 03:49:05,331 --> 03:49:09,969 ARTICULATING IN STRATEGIC PLAN. 5847 03:49:10,036 --> 03:49:11,137 THEREFORE, WE'RE ENCOURAGING TO 5848 03:49:11,204 --> 03:49:13,106 THINK ABOUT NEEDS RELATED TO 5849 03:49:13,172 --> 03:49:15,074 FOUR GOALS. 5850 03:49:15,141 --> 03:49:17,510 A BRIDGED ON THE SLIDE, THE 5851 03:49:17,577 --> 03:49:18,945 FIRST IS ADVANCING THERAPY 5852 03:49:19,011 --> 03:49:21,247 DEVELOPMENT FOR EVERYONE BY 5853 03:49:21,314 --> 03:49:23,416 IDENTIFYING HUMAN BIOLOGICAL AND 5854 03:49:23,483 --> 03:49:25,084 BEHAVIORAL AND ENVIRONMENTAL 5855 03:49:25,151 --> 03:49:26,686 FACTORS THAT AFFECT HEALTH, 5856 03:49:26,752 --> 03:49:28,988 DISEASE, AND THE PATIENT 5857 03:49:29,055 --> 03:49:29,422 EXPERIENCE. 5858 03:49:29,489 --> 03:49:31,190 AND TESTING INTERVENTIONS IN 5859 03:49:31,257 --> 03:49:32,925 PEOPLE WITH ARTHRITIS AND 5860 03:49:32,992 --> 03:49:34,460 MUSCULOSKELETAL AND SKIN 5861 03:49:34,527 --> 03:49:34,994 DISEASES. 5862 03:49:35,061 --> 03:49:35,995 SECOND FOSTERING DISCOVERIES TO 5863 03:49:36,062 --> 03:49:38,498 IMPROVE HUMAN HEALTH BY 5864 03:49:38,564 --> 03:49:41,667 DEVELOPING RESOURCES, INCLUDING 5865 03:49:41,734 --> 03:49:42,869 RELEVANT PRE-CLINICAL MODELS, 5866 03:49:42,935 --> 03:49:45,071 UNBIASED CLINICAL DATA AND 5867 03:49:45,138 --> 03:49:47,573 COMPUTATIONAL BIOLOGY 5868 03:49:47,640 --> 03:49:47,874 APPROACHES. 5869 03:49:47,940 --> 03:49:49,242 THIRD, SUPPORTING NECESSARY 5870 03:49:49,308 --> 03:49:50,443 INFRASTRUCTURE AND ROBUST 5871 03:49:50,510 --> 03:49:51,677 DIVERSE RESEARCH WORKFORCE 5872 03:49:51,744 --> 03:49:54,614 CAPABLE OF CONDUCTING ALL TYPES 5873 03:49:54,680 --> 03:49:56,249 OF STUDIES INCLUDING 5874 03:49:56,315 --> 03:49:56,849 INTERDISCIPLINARY RESEARCH AND 5875 03:49:56,916 --> 03:49:58,451 TEAM SCIENCE. 5876 03:49:58,518 --> 03:50:00,419 AND FINALLY COMMUNICATING TIMELY 5877 03:50:00,486 --> 03:50:02,054 AND RELEVANT ADVANCES TO 5878 03:50:02,121 --> 03:50:03,489 PATIENTS, COMMUNITIES, AND 5879 03:50:03,556 --> 03:50:03,789 SCIENTISTS. 5880 03:50:03,856 --> 03:50:06,659 SO THESE GOALS ARE INTENDED TO 5881 03:50:06,726 --> 03:50:07,527 REMAIN CURRENT AND OVERARCHING, 5882 03:50:07,593 --> 03:50:11,564 AGAIN EVEN IF THE TOPICS THAT 5883 03:50:11,631 --> 03:50:12,698 WE'RE FUNDING MOVE BEYOND 5884 03:50:12,765 --> 03:50:13,599 PRIORITIES THAT ARE INCLUDED IN 5885 03:50:13,666 --> 03:50:14,867 THE PLAN. 5886 03:50:14,934 --> 03:50:19,906 LET'S MOVE TO WHAT THOSE 5887 03:50:19,972 --> 03:50:20,573 PRIORITIES ARE. 5888 03:50:20,640 --> 03:50:22,542 SO, BASED ON WHAT WE HEARD FROM 5889 03:50:22,608 --> 03:50:23,943 THE COMMUNITY ABOUT THE STATE OF 5890 03:50:24,010 --> 03:50:26,913 THE SCIENCE AND NEEDS AND 5891 03:50:26,979 --> 03:50:29,315 OPPORTUNITIES NOW WE'VE 5892 03:50:29,382 --> 03:50:29,982 ARTICULATED SIX RESEARCH 5893 03:50:30,049 --> 03:50:30,283 PRIORITIES. 5894 03:50:30,349 --> 03:50:31,817 THEY ARE ABRIDGED ON SLIDES SO 5895 03:50:31,884 --> 03:50:35,788 I'LL READ THE FULL TEXT FOR YOU. 5896 03:50:35,855 --> 03:50:37,190 FIRST, STUDYING MOLECULAR AND 5897 03:50:37,256 --> 03:50:38,090 CELLULAR MECHANISMS OF HEALTH 5898 03:50:38,157 --> 03:50:42,028 AND DISEASE IN HUMANS AND 5899 03:50:42,094 --> 03:50:44,297 UNDERSTANDING RESULTS PHENOTYPES 5900 03:50:44,363 --> 03:50:44,630 AND ENDOTYPES. 5901 03:50:44,697 --> 03:50:50,002 DEVELOPING REGENERATIVE MEDICINE 5902 03:50:50,069 --> 03:50:51,137 APPROACHES, USING DATA SCIENCE, 5903 03:50:51,204 --> 03:50:52,972 ARTIFICIAL INTELLIGENCE, AND 5904 03:50:53,039 --> 03:50:53,839 MACHINE LEARNING AND 5905 03:50:53,906 --> 03:50:55,708 COMPUTATIONAL BIOLOGY TO ADVANCE 5906 03:50:55,775 --> 03:50:57,777 KNOWLEDGE AND TREATMENTS. 5907 03:50:57,843 --> 03:50:59,078 UNDERSTANDING BEHAVIORS AND 5908 03:50:59,145 --> 03:51:00,413 ENVIRONMENTAL EXPOSURES THAT 5909 03:51:00,479 --> 03:51:04,250 PROMOTE HEALTH OR CAUSE DISEASE. 5910 03:51:04,317 --> 03:51:06,118 TRANSLATING FINDINGS INTO 5911 03:51:06,185 --> 03:51:06,752 INTERVENTIONS THROUGH CLINICAL 5912 03:51:06,819 --> 03:51:10,957 AND EPIDEMIOLOGIC STUDIES. 5913 03:51:11,023 --> 03:51:12,792 FINALLY, CONDUCTING RESEARCH ON 5914 03:51:12,858 --> 03:51:14,527 HEALTH DISPARITIES AND IMPROVING 5915 03:51:14,594 --> 03:51:17,597 HEALTH EQUITY, ALL APPLY TO ALL 5916 03:51:17,663 --> 03:51:18,531 FIVE DISEASE AND TISSUE-SPECIFIC 5917 03:51:18,598 --> 03:51:20,333 MISSION AREAS. 5918 03:51:20,399 --> 03:51:21,100 WE'LL BE MONITORING PROGRESS 5919 03:51:21,167 --> 03:51:23,069 ACROSS THE BOARD TO UNDERSTAND 5920 03:51:23,135 --> 03:51:27,340 HOW WE CAN ACCELERATE ADVANCES. 5921 03:51:27,406 --> 03:51:29,208 SOME OF THE NEEDS AND 5922 03:51:29,275 --> 03:51:30,610 OPPORTUNITIES THAT WE HEARD AND 5923 03:51:30,676 --> 03:51:33,579 ONE OF THE ASPECTS OF OUR 5924 03:51:33,646 --> 03:51:34,547 MISSION REALLY REQUIRE 5925 03:51:34,614 --> 03:51:37,283 MECHANISMS THAT GO BEYOND 5926 03:51:37,350 --> 03:51:39,819 TRADITIONAL R01 RESEARCH PROJECT 5927 03:51:39,885 --> 03:51:40,353 GRANT. 5928 03:51:40,419 --> 03:51:41,988 WE'VE ARTICULATED THOSE AS WHAT 5929 03:51:42,054 --> 03:51:44,290 WE ARE CALLING CAPACITY BUILDING 5930 03:51:44,357 --> 03:51:45,224 PRIORITIES AND THERE'S ONE 5931 03:51:45,291 --> 03:51:45,925 OPERATIONAL PRIORITY. 5932 03:51:45,992 --> 03:51:50,396 AND SO THE THREE CAPACITY 5933 03:51:50,463 --> 03:51:50,963 BUILDING PRIORITIES ARE 5934 03:51:51,030 --> 03:51:52,665 DEVELOPING ENABLING RESEARCH 5935 03:51:52,732 --> 03:51:54,133 INFRASTRUCTURE INCLUDING 5936 03:51:54,200 --> 03:51:58,471 TECHNOLOGIES AND NOVEL SYSTEMS. 5937 03:51:58,537 --> 03:51:59,272 SUPPORTING INTERDISCIPLINARY 5938 03:51:59,338 --> 03:52:02,008 RESEARCH TEAM SCIENCE AND 5939 03:52:02,074 --> 03:52:03,209 PARTNERSHIPS, AND PROMOTING 5940 03:52:03,276 --> 03:52:05,278 TRAINING AND ROBUST DIVERSE 5941 03:52:05,344 --> 03:52:05,611 WORKFORCE. 5942 03:52:05,678 --> 03:52:13,085 WE ARTICULATED OUR MISSION 5943 03:52:13,152 --> 03:52:15,054 ASPIRATIONAL THEME, A PRIORITY, 5944 03:52:15,121 --> 03:52:19,458 CONDUCTING INFORMATION 5945 03:52:19,525 --> 03:52:21,327 DISSEMINATION AND ENGAGEMENT 5946 03:52:21,394 --> 03:52:21,827 ACTIVITIES. 5947 03:52:21,894 --> 03:52:24,797 YOU HAVE BEFORE YOU TODAY THE 5948 03:52:24,864 --> 03:52:25,498 MAIN SUBSTANTIVE COMPONENTS OF 5949 03:52:25,564 --> 03:52:26,999 OUR STRATEGIC PLAN. 5950 03:52:27,066 --> 03:52:28,301 YOU HAVE MOST OF THE 5951 03:52:28,367 --> 03:52:29,135 INTRODUCTORY MATERIAL. 5952 03:52:29,201 --> 03:52:31,304 YOU HAVE THE TEXT OF THE FOUR 5953 03:52:31,370 --> 03:52:32,905 GOALS AND TEN PRIORITIES THAT I 5954 03:52:32,972 --> 03:52:34,573 WALKED YOU THROUGH. 5955 03:52:34,640 --> 03:52:36,842 AND THEN COUNCIL SHOULD HAVE 5956 03:52:36,909 --> 03:52:37,710 RECEIVED IN THE ELECTRONIC 5957 03:52:37,777 --> 03:52:41,080 COUNCIL BOOK IN ADVANCE THE FULL 5958 03:52:41,147 --> 03:52:43,616 TEXT WHICH ALSO INCLUDES 5959 03:52:43,683 --> 03:52:45,051 EXAMPLES OF RELEVANT ACTIVITIES 5960 03:52:45,117 --> 03:52:46,485 THAT COULD RELATE TO EACH 5961 03:52:46,552 --> 03:52:49,889 PRIORITY AS WELL AS RESOURCE 5962 03:52:49,955 --> 03:52:51,057 BOXES THAT DETAIL RELATED 5963 03:52:51,123 --> 03:52:53,693 RESOURCES THAT COULD BENEFIT THE 5964 03:52:53,759 --> 03:52:53,959 COMMUNITY. 5965 03:52:54,026 --> 03:52:55,494 SO, WHEN YOU SEE THE THIRD 5966 03:52:55,561 --> 03:52:56,462 REQUEST FOR INFORMATION WHICH 5967 03:52:56,529 --> 03:52:58,664 WE'RE GOING TO ISSUE THIS SUMMER 5968 03:52:58,731 --> 03:53:00,299 AS WELL AS FULL STRATEGIC PLAN, 5969 03:53:00,366 --> 03:53:02,501 FINAL DRAFT OF THE PLAN, IN 5970 03:53:02,568 --> 03:53:05,671 SEPTEMBER, THERE ARE GOING TO BE 5971 03:53:05,738 --> 03:53:08,507 TWO NOT INCLUDED NOW. 5972 03:53:08,574 --> 03:53:11,644 FIRST WILL INCLUDE EXAMPLES OF 5973 03:53:11,711 --> 03:53:13,679 RESEARCH ACCOMPLISHMENTS FROM FY 5974 03:53:13,746 --> 03:53:14,747 2020 THROUGH FY 2024 THAT RELATE 5975 03:53:14,814 --> 03:53:16,482 TO THE STRATEGIC PLAN AND THEN 5976 03:53:16,549 --> 03:53:18,584 LAST WILL BE AN APPENDIX ON HOW 5977 03:53:18,651 --> 03:53:20,986 WE INTEND TO -- IT'S AN OVERVIEW 5978 03:53:21,053 --> 03:53:25,691 HOW WE INTEND TO IMPLEMENT AND 5979 03:53:25,758 --> 03:53:26,592 REPORT ON OUR PLAN. 5980 03:53:26,659 --> 03:53:29,195 I'M JUST GOING TO CLOSE WITH THE 5981 03:53:29,261 --> 03:53:29,895 NEXT STEPS. 5982 03:53:29,962 --> 03:53:31,964 SO AFTER TODAY WE'RE GOING TO 5983 03:53:32,031 --> 03:53:32,832 INCORPORATE YOUR COMMENTS AND 5984 03:53:32,898 --> 03:53:34,800 THEN WE'LL ISSUE A THIRD REQUEST 5985 03:53:34,867 --> 03:53:36,802 FOR INFORMATION SO THE COMMUNITY 5986 03:53:36,869 --> 03:53:41,474 CAN HAVE INPUT ON THE NEAR FINAL 5987 03:53:41,540 --> 03:53:41,674 PLAN. 5988 03:53:41,741 --> 03:53:43,676 SO VERY IMPORTANTLY, IF YOU HAVE 5989 03:53:43,743 --> 03:53:44,744 ADDITIONAL FEEDBACK AFTER THIS 5990 03:53:44,810 --> 03:53:46,946 MEETING, WE WOULD LIKE YOUR 5991 03:53:47,012 --> 03:53:49,448 WRITTEN COMMENTS BY TUESDAY, 5992 03:53:49,515 --> 03:53:50,449 JUNE 4. 5993 03:53:50,516 --> 03:53:51,851 SO WE INTEND TO HAVE A FINAL 5994 03:53:51,917 --> 03:53:53,386 DRAFT OF THE PLAN FOR YOU TO 5995 03:53:53,452 --> 03:53:55,020 REVIEW BEFORE THE SEPTEMBER 5996 03:53:55,087 --> 03:53:56,989 COUNCIL MEETING, AND THEN 5997 03:53:57,056 --> 03:53:58,624 PUBLISH -- THEN AFTER VARIOUS 5998 03:53:58,691 --> 03:53:59,291 ADMINISTRATIVE CLEARANCES WE'LL 5999 03:53:59,358 --> 03:54:01,694 PUBLISH THE PLAN BY THE END OF 6000 03:54:01,761 --> 03:54:03,229 THE CALENDAR YEAR. 6001 03:54:03,295 --> 03:54:04,563 SO WITH THAT OVERVIEW I WANT TO 6002 03:54:04,630 --> 03:54:07,833 TURN THE MEETING BACK OVER TO 6003 03:54:07,900 --> 03:54:09,368 DR. CRISWELL TO LEAD THE 6004 03:54:09,435 --> 03:54:10,536 DISCUSSION TO COLLECT YOUR 6005 03:54:10,603 --> 03:54:11,103 COMMENTS. 6006 03:54:11,170 --> 03:54:14,407 THANK YOU VERY MUCH. 6007 03:54:14,473 --> 03:54:14,740 >> GREAT. 6008 03:54:14,807 --> 03:54:15,508 THANK YOU. 6009 03:54:15,574 --> 03:54:18,677 I WANT TO THANK YOU AND YOUR 6010 03:54:18,744 --> 03:54:21,313 TEAM AND THE MANY FOLKS, PROGRAM 6011 03:54:21,380 --> 03:54:22,915 OFFICERS, LEADERSHIP, WHO WORKED 6012 03:54:22,982 --> 03:54:25,351 SO HARD TO GET US TO THIS POINT. 6013 03:54:25,418 --> 03:54:26,986 IT REALLY DOES REFLECT A 6014 03:54:27,052 --> 03:54:29,054 TREMENDOUS AMOUNT OF INPUT FROM 6015 03:54:29,121 --> 03:54:34,560 THE COMMUNITY, THE BROADER 6016 03:54:34,627 --> 03:54:34,860 COMMUNITY. 6017 03:54:34,927 --> 03:54:38,497 SO EAGER TO HEAR ANY THOUGHTS, 6018 03:54:38,564 --> 03:54:38,998 REACTIONS, SUGGESTIONS, 6019 03:54:39,064 --> 03:54:42,334 COMMENTS, ANYBODY WOULD LIKE TO 6020 03:54:42,401 --> 03:54:45,738 SHARE NOW, AND WE'LL BE LOOKING 6021 03:54:45,805 --> 03:54:48,140 OUT FOR COMMENTS AND SUGGESTIONS 6022 03:54:48,207 --> 03:54:49,542 MOVING FORWARD AS YOU HEARD 6023 03:54:49,608 --> 03:54:52,077 THROUGH NEXT TUESDAY AND AFTER 6024 03:54:52,144 --> 03:54:56,215 THE LAST RFI. 6025 03:54:56,282 --> 03:54:58,083 I SEE JONELLE DRUGAN, DID YOU 6026 03:54:58,150 --> 03:54:59,285 WANT TO ADD ADDITIONAL COMMENTS 6027 03:54:59,351 --> 03:55:03,322 SINCE YOU'VE BEEN SO HEAVILY 6028 03:55:03,389 --> 03:55:04,390 INVOLVED? 6029 03:55:04,457 --> 03:55:07,359 >> I WANT TO ECHO YOUR 6030 03:55:07,426 --> 03:55:09,261 APPRECIATION TO MY COLLEAGUES AS 6031 03:55:09,328 --> 03:55:11,764 WELL AS TO THE COMMUNITY. 6032 03:55:11,831 --> 03:55:14,834 WE REALLY FELT GOING INTO THIS 6033 03:55:14,900 --> 03:55:16,001 UNDER DR. CRISWELL'S LEADERSHIP 6034 03:55:16,068 --> 03:55:21,841 THAT THIS NEEDED TO BE COMMUNITY 6035 03:55:21,907 --> 03:55:22,074 DRIVEN. 6036 03:55:22,141 --> 03:55:23,809 WE NEEDED TO HEAR FROM THE 6037 03:55:23,876 --> 03:55:25,878 COMMUNITY WHAT THE NEEDS AND 6038 03:55:25,945 --> 03:55:27,746 OPPORTUNITIES WERE. 6039 03:55:27,813 --> 03:55:29,482 AND THEN TAKE THAT INFORMATION 6040 03:55:29,548 --> 03:55:31,250 AND DISTILL IT INTO SOMETHING 6041 03:55:31,317 --> 03:55:33,986 THAT WE THOUGHT COULD POSITION 6042 03:55:34,053 --> 03:55:37,156 THE FIELD TO MOVE FORWARD. 6043 03:55:37,223 --> 03:55:40,125 SO, THANK YOU TO ALL WHO HAVE 6044 03:55:40,192 --> 03:55:42,261 PARTICIPATED AND ALL WHO ARE 6045 03:55:42,328 --> 03:55:44,063 GOING TO PARTICIPATE AS PART OF 6046 03:55:44,129 --> 03:55:48,000 THE COUNCIL PROVIDING INPUT. 6047 03:55:48,067 --> 03:55:52,872 THANK YOU. 6048 03:55:55,841 --> 03:55:58,277 >> ANN? 6049 03:55:58,344 --> 03:56:01,680 >> I HAVEN'T SEEN -- HAVEN'T 6050 03:56:01,747 --> 03:56:06,685 BEEN ABLE TO READ, THERE'S A 6051 03:56:06,752 --> 03:56:07,353 MORE STRATEGIC PLAN? 6052 03:56:07,419 --> 03:56:09,755 >> YOU DID NOT GET THE LINK TO 6053 03:56:09,822 --> 03:56:10,756 THE e-COUNCIL BOOK? 6054 03:56:10,823 --> 03:56:13,259 WE'LL MAKE SURE WE GET THAT TO 6055 03:56:13,325 --> 03:56:13,425 YOU. 6056 03:56:13,492 --> 03:56:15,127 >> IS THERE -- IS IT A FULL 6057 03:56:15,194 --> 03:56:17,863 DRAFT STRATEGIC PLAN AT THIS 6058 03:56:17,930 --> 03:56:19,965 POINT OR JUST THE BULLETS HERE? 6059 03:56:20,032 --> 03:56:22,935 >> FULL DRAFT. 6060 03:56:23,002 --> 03:56:23,903 >> OKAY, HERE. 6061 03:56:23,969 --> 03:56:24,270 >> MICROPHONE. 6062 03:56:24,336 --> 03:56:27,206 >> SO THERE ARE A COUPLE 6063 03:56:27,273 --> 03:56:28,641 APPENDICES WE'RE STILL WORKING 6064 03:56:28,707 --> 03:56:31,010 ON BUT OTHERWISE IT'S THE FULL 6065 03:56:31,076 --> 03:56:31,577 DRAFT. 6066 03:56:31,644 --> 03:56:31,911 >> OKAY. 6067 03:56:31,977 --> 03:56:34,113 I WONDER IF MAYBE THERE COULD BE 6068 03:56:34,179 --> 03:56:38,384 A LITTLE BIT LONGER THAN FIVE 6069 03:56:38,450 --> 03:56:40,653 DAYS FOR THE COUNCIL TO TAKE A 6070 03:56:40,719 --> 03:56:42,288 FULL LOOK NOW THAT WE'LL HAVE 6071 03:56:42,354 --> 03:56:43,389 HAD A LITTLE DISCUSSION MAYBE 6072 03:56:43,455 --> 03:56:44,590 EXTEND ANOTHER WEEK OR SOMETHING 6073 03:56:44,657 --> 03:56:46,892 JUST TO MAKE SURE THAT YOU GET 6074 03:56:46,959 --> 03:56:47,059 IT. 6075 03:56:47,126 --> 03:56:48,527 MY SECOND QUESTION IS, ONE OF 6076 03:56:48,594 --> 03:56:50,629 OUR BULLETS SAID THERE WOULD BE 6077 03:56:50,696 --> 03:56:52,064 PUBLIC COMMENT BETWEEN JULY AND 6078 03:56:52,131 --> 03:56:52,464 SEPTEMBER. 6079 03:56:52,531 --> 03:56:54,333 IS THAT THE PLAN AS WELL? 6080 03:56:54,400 --> 03:56:56,502 >> YES. 6081 03:56:56,569 --> 03:56:57,169 >> BECAUSE I KNOW ORGANIZATIONS 6082 03:56:57,236 --> 03:57:00,472 WILL WANT TO WEIGH IN AS WELL AS 6083 03:57:00,539 --> 03:57:01,006 RESEARCHERS. 6084 03:57:01,073 --> 03:57:01,774 >> ABSOLUTELY. 6085 03:57:01,840 --> 03:57:02,775 WE'LL POST THE FULL DRAFT PLAN 6086 03:57:02,841 --> 03:57:04,510 ON THE WEB. 6087 03:57:04,577 --> 03:57:05,945 ONCE WE'VE INCORPORATED 6088 03:57:06,011 --> 03:57:06,612 COUNCIL'S COMMENTS, WE'LL POST 6089 03:57:06,679 --> 03:57:08,347 FOR PUBLIC COMMENT ONCE AGAIN. 6090 03:57:08,414 --> 03:57:08,747 >> WONDERFUL. 6091 03:57:08,814 --> 03:57:09,548 LOOK FORWARD TO THAT. 6092 03:57:09,615 --> 03:57:10,115 THANK YOU. 6093 03:57:10,182 --> 03:57:11,517 >> YOU ALL HAD THE OPPORTUNITY 6094 03:57:11,584 --> 03:57:13,953 TO FIRST WEIGH IN ON THIS DRAFT 6095 03:57:14,019 --> 03:57:15,788 AND THEN WE'LL TAKE BACK YOUR 6096 03:57:15,854 --> 03:57:16,055 COMMENTS. 6097 03:57:16,121 --> 03:57:17,923 AND AN UPDATED DRAFT FOR THE 6098 03:57:17,990 --> 03:57:18,891 BROADER COMMUNITY. 6099 03:57:18,958 --> 03:57:19,825 >> THANK YOU. 6100 03:57:19,892 --> 03:57:21,827 THANK YOU FOR ALL YOUR WORK ON 6101 03:57:21,894 --> 03:57:22,127 THIS. 6102 03:57:22,194 --> 03:57:24,096 I WENT THROUGH THE GRUELING 6103 03:57:24,163 --> 03:57:27,299 SESSIONS IN SEPTEMBER. 6104 03:57:27,366 --> 03:57:29,501 >> GRUELING? 6105 03:57:29,568 --> 03:57:31,136 THEY WERE FUN! 6106 03:57:31,203 --> 03:57:33,205 THEY WERE FUN. 6107 03:57:33,272 --> 03:57:37,376 >> SOME OF THEM ESPECIALLY. 6108 03:57:37,443 --> 03:57:41,747 >> I SAW I THINK MARIA AND I 6109 03:57:41,814 --> 03:57:42,848 THINK VALENTINA? 6110 03:57:42,915 --> 03:57:44,049 >> I COULDN'T FIND THE DRAFT 6111 03:57:44,116 --> 03:57:44,283 EITHER. 6112 03:57:44,350 --> 03:57:45,684 WHEN I PRESS ON THE LINK UNDER 6113 03:57:45,751 --> 03:57:50,623 YOUR NAME IT TAKES ME TO THE 6114 03:57:50,689 --> 03:57:52,791 COMMON AREA LOGGING PAGE, NOT A 6115 03:57:52,858 --> 03:57:53,058 DOCUMENT. 6116 03:57:53,125 --> 03:57:53,993 I DIDN'T REALIZE THERE WAS 6117 03:57:54,059 --> 03:57:57,062 SOMETHING TO READ BECAUSE UNDER 6118 03:57:57,129 --> 03:58:00,132 THERE THERE WASN'T, AT LEAST FOR 6119 03:58:00,199 --> 03:58:04,603 ME, THERE'S NO DRAFT UNDER POINT 6120 03:58:04,670 --> 03:58:04,803 SEVEN. 6121 03:58:04,870 --> 03:58:07,473 I DON'T KNOW IF IT'S ME ONLY. 6122 03:58:07,539 --> 03:58:11,276 BUT IT TAKES ME TO A LOG-IN PAGE 6123 03:58:11,343 --> 03:58:15,247 FOR THE COMMENTS PAGE. 6124 03:58:15,314 --> 03:58:17,650 >> FOR ME IT WORKS. 6125 03:58:17,716 --> 03:58:20,486 YOU GUYS GOT IT, OKAY. 6126 03:58:20,552 --> 03:58:22,354 >> BEFORE YOU GO LET'S MAKE SURE 6127 03:58:22,421 --> 03:58:23,889 WE GET YOU ACCESS, THOSE WHO 6128 03:58:23,956 --> 03:58:24,857 DIDN'T GET SENT. 6129 03:58:24,923 --> 03:58:26,392 >> WE CAN ALSO E-MAIL THE 6130 03:58:26,458 --> 03:58:27,726 DOCUMENT TO YOU TOO. 6131 03:58:27,793 --> 03:58:28,260 >> YEAH. 6132 03:58:28,327 --> 03:58:30,029 >> THAT MIGHT BE EASIER IF 6133 03:58:30,095 --> 03:58:36,368 YOU'RE HAVING ACCESS ISSUES. 6134 03:58:36,435 --> 03:58:37,236 >> YEAH, IT DOWNLOADED BUT FOR 6135 03:58:37,302 --> 03:58:41,273 ME, I DON'T KNOW IF IT'S BECAUSE 6136 03:58:41,340 --> 03:58:43,709 I HAVE A MAC. 6137 03:58:43,776 --> 03:58:44,677 >> IT'S A MAC ISSUE. 6138 03:58:44,743 --> 03:58:46,745 >> YOU'LL SEND IT OUT TO 6139 03:58:46,812 --> 03:58:47,880 EVERYBODY BY E-MAIL, TO MAKE 6140 03:58:47,946 --> 03:58:52,918 SURE YOU ALL HAVE IT. 6141 03:58:52,985 --> 03:58:55,888 >> WE'LL E-MAIL IT. 6142 03:58:55,954 --> 03:58:56,755 >> YEAH. 6143 03:58:56,822 --> 03:59:00,159 >> THIS IS JEANNE. 6144 03:59:00,225 --> 03:59:01,794 I'M EAGER TO HEAR ABOUT THE 6145 03:59:01,860 --> 03:59:02,461 IMPLEMENTATION PLAN. 6146 03:59:02,528 --> 03:59:05,964 IT'S A WORK IN PROGRESSES, 6147 03:59:06,031 --> 03:59:08,267 RIGHT? 6148 03:59:08,333 --> 03:59:10,669 I CAN'T WAIT. 6149 03:59:10,736 --> 03:59:12,538 >> IT'S CUED UP FOR STEPHANIE TO 6150 03:59:12,604 --> 03:59:13,972 SEND TO YOUR LEADERSHIP TEAM. 6151 03:59:14,039 --> 03:59:15,407 WE WANTED TO HEAR COUNCIL'S 6152 03:59:15,474 --> 03:59:19,678 COMMENTS IN CASE THEY SAID WE 6153 03:59:19,745 --> 03:59:21,513 HATED IT AND WANT YOU TO REDO 6154 03:59:21,580 --> 03:59:23,282 THE WHOLE PLAN. 6155 03:59:23,348 --> 03:59:26,018 IT'S CUED UP, ASSUMING THAT WE 6156 03:59:26,085 --> 03:59:28,087 AREN'T REWRITING THE PLAN BACK 6157 03:59:28,153 --> 03:59:30,289 AT STEP ZERO IT WILL BE IN YOUR 6158 03:59:30,355 --> 03:59:33,459 IN-BOX AFTER THIS COUNCIL 6159 03:59:33,525 --> 03:59:34,126 MEETING. 6160 03:59:34,193 --> 03:59:34,426 >> GREAT. 6161 03:59:34,493 --> 03:59:37,830 >> DR. JEPSON HAS A HAND UP? 6162 03:59:37,896 --> 03:59:41,333 >> YEAH, I DON'T KNOW IF -- SO 6163 03:59:41,400 --> 03:59:42,201 PROVOCATIVE MY COUNCIL MEETING 6164 03:59:42,267 --> 03:59:46,271 BUT I'M GOING TO ANYWAY. 6165 03:59:46,338 --> 03:59:51,510 I READ THROUGH THE SUMMARY OF 6166 03:59:51,577 --> 03:59:52,711 THE STRATEGIC PLAN, REFLECTED 6167 03:59:52,778 --> 03:59:53,712 THREE DAYS VERY WELL. 6168 03:59:53,779 --> 03:59:55,981 ONE THING I WAS HOPING TO SEE A 6169 03:59:56,048 --> 03:59:59,284 LITTLE BIT MORE OF WAS EMPHASIS 6170 03:59:59,351 --> 04:00:01,587 ON PRO-ACTIVE PERSONALIZED 6171 04:00:01,653 --> 04:00:01,887 TREATMENTS. 6172 04:00:01,954 --> 04:00:04,189 THIS WOULD INCLUDE DIAGNOSTIC 6173 04:00:04,256 --> 04:00:05,524 TREATMENTS BECAUSE ONE THING IN 6174 04:00:05,591 --> 04:00:06,625 THE MUSCULOSKELETAL WORLD THAT 6175 04:00:06,692 --> 04:00:10,329 WE'RE DOING OKAY WITH BUT NOT 6176 04:00:10,395 --> 04:00:11,096 REALLY SPECTACULARLY WITH IS 6177 04:00:11,163 --> 04:00:12,965 GETTING IN FRONT OF DISEASE 6178 04:00:13,031 --> 04:00:15,134 CONDITIONS RATHER THAN ALWAYS 6179 04:00:15,200 --> 04:00:15,934 BEHIND THEM. 6180 04:00:16,001 --> 04:00:19,204 WE ALWAYS SEEM TO BE IN 6181 04:00:19,271 --> 04:00:21,840 RESTORATIVE TREATMENT PLAN. 6182 04:00:21,907 --> 04:00:24,243 WE MAY -- YOU KNOW, WE MAY BE 6183 04:00:24,309 --> 04:00:25,878 PUSHING OURSELVES, OUR 6184 04:00:25,944 --> 04:00:29,815 COMMUNITY, OUR FIELD, TO REALLY 6185 04:00:29,882 --> 04:00:31,784 EMPHASIZE RESEARCH THAT PUSHING 6186 04:00:31,850 --> 04:00:32,651 THAT ENVELOPE. 6187 04:00:32,718 --> 04:00:34,953 I'LL PUT COMMENTS IN THERE WHEN 6188 04:00:35,020 --> 04:00:38,924 THAT TIME COMES UP BUT I WAS -- 6189 04:00:38,991 --> 04:00:40,025 MAYBE OTHER PEOPLE, COUNCIL 6190 04:00:40,092 --> 04:00:41,326 MEMBERS, HAD THOUGHTS ON THAT 6191 04:00:41,393 --> 04:00:41,760 TOO. 6192 04:00:41,827 --> 04:00:42,728 >> THANK YOU. 6193 04:00:42,795 --> 04:00:45,497 YOU REMINDED ME THERE'S ALSO A 6194 04:00:45,564 --> 04:00:47,900 SECTION ON BOLD ASPIRATIONS THAT 6195 04:00:47,966 --> 04:00:49,668 YOU DIDN'T MENTION BUT THAT ALSO 6196 04:00:49,735 --> 04:00:52,504 COULD BE A PLACE WHERE THAT SORT 6197 04:00:52,571 --> 04:00:53,605 OF VISIONARY THINKING, 6198 04:00:53,672 --> 04:00:57,075 ASPIRATIONAL GOALS, COULD BE 6199 04:00:57,142 --> 04:00:57,342 REFLECTED. 6200 04:00:57,409 --> 04:00:58,877 THANK YOU AND PLEASE SEND IN 6201 04:00:58,944 --> 04:00:59,645 COMMENTS. 6202 04:00:59,711 --> 04:01:04,116 WE'RE TAKING NOTES BUT CAPTURE 6203 04:01:04,183 --> 04:01:04,349 THOSE. 6204 04:01:04,416 --> 04:01:09,054 DR. BOTSWAY HAS A HAND UP TOO. 6205 04:01:09,121 --> 04:01:10,789 >> THANK YOU FOR THE 6206 04:01:10,856 --> 04:01:14,092 PRESENTATION AND I'M ALSO -- I 6207 04:01:14,159 --> 04:01:15,494 SUFFERED ISSUES AND MAY BE 6208 04:01:15,561 --> 04:01:19,565 SPEAKING OUT OF TURN BUT WANTED 6209 04:01:19,631 --> 04:01:21,400 TO ASK TWO MAYBE CLARIFYING 6210 04:01:21,466 --> 04:01:24,469 QUESTIONS IN TERMS OF THINKING. 6211 04:01:24,536 --> 04:01:29,274 FIRST RELATES TO THE BULLET IN 6212 04:01:29,341 --> 04:01:32,578 RELATIONSHIP TO THE HEALTH NEEDS 6213 04:01:32,644 --> 04:01:33,445 OF DIVERSE POPULATIONS, 6214 04:01:33,512 --> 04:01:34,780 HISTORICAL UNDERREPRESENTED 6215 04:01:34,847 --> 04:01:35,013 GROUPS. 6216 04:01:35,080 --> 04:01:37,416 MORE SPECIFICALLY HOW IS NIAMS 6217 04:01:37,482 --> 04:01:40,118 OR IS THAT IDEA INCLUSIVE OF 6218 04:01:40,185 --> 04:01:42,254 EMERGING INSIGHTS INTO THE ROLE 6219 04:01:42,321 --> 04:01:43,956 OF LIKE SOCIAL DETERMINANTS OF 6220 04:01:44,022 --> 04:01:49,261 HEALTH AND CONCEPTS AND 6221 04:01:49,328 --> 04:01:50,796 ALLOSTATIC LOAD, CHRONIC 6222 04:01:50,863 --> 04:01:51,997 STRESSORS IN CREATING 6223 04:01:52,064 --> 04:01:55,267 DISPARITIES, DISEASE BURDEN, 6224 04:01:55,334 --> 04:01:56,268 TREATMENT EFFICACY, DOES THAT 6225 04:01:56,335 --> 04:01:59,238 ENCOMPASS THOSE IDEAS AND HOW IS 6226 04:01:59,304 --> 04:02:01,840 IT COMMUNICATED TO THE PUBLIC? 6227 04:02:01,907 --> 04:02:04,042 >> YEAH, THANK YOU FOR THAT 6228 04:02:04,109 --> 04:02:04,443 COMMENT. 6229 04:02:04,509 --> 04:02:06,678 MY COLLEAGUES MIGHT WANT TO ADD 6230 04:02:06,745 --> 04:02:08,213 TO THIS. 6231 04:02:08,280 --> 04:02:08,513 ABSOLUTELY. 6232 04:02:08,580 --> 04:02:11,283 AND KIND OF ON THAT NOTE, ONE OF 6233 04:02:11,350 --> 04:02:12,784 THE THINGS WE HEARD MORE NOW 6234 04:02:12,851 --> 04:02:14,753 THAN I THINK WAS REFLECTED IN 6235 04:02:14,820 --> 04:02:17,623 THE PREVIOUS PLAN WAS 6236 04:02:17,689 --> 04:02:19,291 RECOGNITION OF THE ENVIRONMENTAL 6237 04:02:19,358 --> 04:02:23,629 CONTRIBUTION TO DISEASE VERY 6238 04:02:23,695 --> 04:02:24,162 BROADLY DEFINED INCLUDING 6239 04:02:24,229 --> 04:02:26,832 CERTAINLY SOCIAL DETERMINANTS OF 6240 04:02:26,899 --> 04:02:27,633 HEALTH, CLIMATE CHANGE, ET 6241 04:02:27,699 --> 04:02:29,668 CETERA, AND THIS I THINK 6242 04:02:29,735 --> 04:02:31,536 ILLUSTRATES ONE OF MANY VALUES 6243 04:02:31,603 --> 04:02:33,138 OF THE STRATEGIC PLAN IS WE 6244 04:02:33,205 --> 04:02:34,606 DON'T HAVE A LOT OF RESEARCH IN 6245 04:02:34,673 --> 04:02:39,411 THAT AREA SO THIS CAN HELP US 6246 04:02:39,478 --> 04:02:40,646 IDENTIFY GAPS AND OPPORTUNITIES. 6247 04:02:40,712 --> 04:02:42,681 BUT ABSOLUTELY THAT WOULD BE 6248 04:02:42,748 --> 04:02:46,084 PART OF THAT CONCEPT, AND 6249 04:02:46,151 --> 04:02:48,487 JONELLE WERE YOU GOING TO 6250 04:02:48,553 --> 04:02:49,888 RESPOND TO THIS QUESTION TOO? 6251 04:02:49,955 --> 04:02:50,689 >> I WAS. 6252 04:02:50,756 --> 04:02:51,556 >> GO AHEAD. 6253 04:02:51,623 --> 04:02:54,726 >> TO READ A COUPLE BULLETS, ALL 6254 04:02:54,793 --> 04:02:57,562 IN YOUR ELECTRONIC COUNCIL BOOK, 6255 04:02:57,629 --> 04:02:59,965 IDENTIFY THE BIOLOGIC SOCIAL AND 6256 04:03:00,032 --> 04:03:01,833 ENVIRONMENTAL CAUSES OF 6257 04:03:01,900 --> 04:03:03,402 INIQUITIABLE HEALTH OUTCOMES, IN 6258 04:03:03,468 --> 04:03:04,603 PEOPLE FROM UNDERREPRESENTED 6259 04:03:04,670 --> 04:03:08,840 GROUPS WHO HAVE DISEASES 6260 04:03:08,907 --> 04:03:10,175 ADDRESSED BY NIAMS. 6261 04:03:10,242 --> 04:03:11,877 DETERMINING HOW UNDERREPRESENTED 6262 04:03:11,944 --> 04:03:16,315 GROUPS CAN BENEFIT FROM PROVEN 6263 04:03:16,381 --> 04:03:18,917 INTERVENTIONS THROUGH COMMUNITY 6264 04:03:18,984 --> 04:03:20,385 ENGAGEMENT AND IMPLEMENTATION 6265 04:03:20,452 --> 04:03:20,986 SCIENCE EFFORTS. 6266 04:03:21,053 --> 04:03:24,056 AND THOSE ARE TWO EXAMPLES. 6267 04:03:24,122 --> 04:03:26,491 AND THEN WE ALSO HAVE SOME 6268 04:03:26,558 --> 04:03:37,069 BULLETS ON IMPROVING DIVERSITY 6269 04:03:40,305 --> 04:03:41,273 OF RESEARCH PARTICIPANTS. 6270 04:03:41,340 --> 04:03:43,875 >> CONCEPTS RELATED TO 6271 04:03:43,942 --> 04:03:44,609 ALLOSTATIC LOAD ARE IMPORTANT, 6272 04:03:44,676 --> 04:03:45,410 SOCIAL DETERMINANTS OF HEALTH 6273 04:03:45,477 --> 04:03:46,945 CAME ACROSS CLEARLY THERE. 6274 04:03:47,012 --> 04:03:49,881 ONE OTHER COMMENT IN 6275 04:03:49,948 --> 04:03:51,116 RELATIONSHIP TO THE REGENERATIVE 6276 04:03:51,183 --> 04:03:53,819 MEDICINE, BASED ON MY OWN 6277 04:03:53,885 --> 04:03:55,687 EXPERIENCE DOING SICKLE CELL 6278 04:03:55,754 --> 04:03:56,888 DISEASE RESEARCH. 6279 04:03:56,955 --> 04:04:06,898 I MAY BE MISSTATING, IT'S BEEN 6280 04:04:06,965 --> 04:04:08,100 MY EXPRESSION SUBMITTED 6281 04:04:08,166 --> 04:04:09,301 PROPOSALS THROUGH EXTRAMURAL 6282 04:04:09,368 --> 04:04:11,603 PROGRAM SICKLE CELL RESEARCH 6283 04:04:11,670 --> 04:04:13,939 SOMEHOW HAS TO GO TO NHLBI OR 6284 04:04:14,006 --> 04:04:17,709 SOMETHING LIKE THAT, THERE'S 6285 04:04:17,776 --> 04:04:24,082 SOME TYPE OF A RULE ABOUT WHICH 6286 04:04:24,149 --> 04:04:27,252 INSTITUTES ARE ASSIGNED SICKLE 6287 04:04:27,319 --> 04:04:29,421 CELL DEGREES GRANTS, NHLBI 6288 04:04:29,488 --> 04:04:31,456 DOESN'T DO R21, IT DOESN'T GO 6289 04:04:31,523 --> 04:04:33,792 ANYWHERE, AS ONE OF THE 6290 04:04:33,859 --> 04:04:34,126 CONSEQUENCES. 6291 04:04:34,192 --> 04:04:39,998 AND SO I ASK THAT IN 6292 04:04:40,065 --> 04:04:40,599 RELATIONSHIP TO REGENERATIVE 6293 04:04:40,665 --> 04:04:42,734 MEDICINE, AND WHETHER IT IS 6294 04:04:42,801 --> 04:04:44,503 INCLUSIVE OF IDEAS AND 6295 04:04:44,569 --> 04:04:47,639 RELATIONSHIP TO AGING, I DON'T 6296 04:04:47,706 --> 04:04:51,610 KNOW WHETHER THERE'S ANY KIND OF 6297 04:04:51,676 --> 04:04:53,678 STRICTURES ABOUT THE DEGREE TO 6298 04:04:53,745 --> 04:04:56,415 WHICH AGING FOCUSED RESEARCH HAS 6299 04:04:56,481 --> 04:05:00,452 TO GO THROUGH NIA AS A PRIMARY 6300 04:05:00,519 --> 04:05:04,623 INSTITUTE OR CAN -- OR IS NIAMS 6301 04:05:04,689 --> 04:05:06,158 UNFETTERED IN ITS ABILITY TO 6302 04:05:06,224 --> 04:05:09,428 SUPPORT AGING AS A COMPONENT OF 6303 04:05:09,494 --> 04:05:13,465 WE ARE KIND OF THOSE FUTURE 6304 04:05:13,532 --> 04:05:14,699 INITIATIVES IN THE REGENERATIVE 6305 04:05:14,766 --> 04:05:15,333 MEDICINE SPACE? 6306 04:05:15,400 --> 04:05:21,073 I FEEL LIKE THIS TOPIC IS 6307 04:05:21,139 --> 04:05:23,642 GAINING A LOT OF WELL-DESERVED 6308 04:05:23,708 --> 04:05:27,312 APPRECIATION AND IT'S IMPORTANT 6309 04:05:27,379 --> 04:05:29,648 TO REGENERATIVE MEDICINE 6310 04:05:29,714 --> 04:05:30,582 THERAPY, THERAPEUTIC 6311 04:05:30,649 --> 04:05:32,784 DEVELOPMENT, I WANTED TO ASK IN 6312 04:05:32,851 --> 04:05:34,619 TERMS OF THE STRATEGIC PLAN, YOU 6313 04:05:34,686 --> 04:05:40,525 KNOW, WHETHER THERE MAY BE ANY 6314 04:05:40,592 --> 04:05:41,726 SIMILAR TYPES OF RESTRICTIONS OR 6315 04:05:41,793 --> 04:05:45,097 COMPLEXITY IN HOW THAT MAY BE 6316 04:05:45,163 --> 04:05:45,363 SUPPORTED. 6317 04:05:45,430 --> 04:05:46,832 >> YEAH, ONE OF THE THINGS 6318 04:05:46,898 --> 04:05:50,435 YOU'RE REFERRING TO HAS TO DO 6319 04:05:50,502 --> 04:05:52,104 WITH REFERRAL, I'M BLANKING ON 6320 04:05:52,170 --> 04:05:55,807 THE NAME, REFERRAL GUIDANCE, A 6321 04:05:55,874 --> 04:05:57,676 PROCESS OF REFERRAL THAT 6322 04:05:57,742 --> 04:05:59,644 DETERMINES WHERE GRANTS GET 6323 04:05:59,711 --> 04:06:00,712 DISTRIBUTED, TO WHAT INSTITUTES 6324 04:06:00,779 --> 04:06:01,613 AND CENTERS. 6325 04:06:01,680 --> 04:06:03,181 IT GETS QUITE SPECIFIC. 6326 04:06:03,248 --> 04:06:05,851 THERE ARE ALSO A LOT OF GRAY 6327 04:06:05,917 --> 04:06:06,218 AREAS. 6328 04:06:06,284 --> 04:06:08,720 THAT'S ONE ISSUE. 6329 04:06:08,787 --> 04:06:12,324 IT'S NOT NECESSARILY -- FOR 6330 04:06:12,390 --> 04:06:13,859 EXAMPLE, ABSOLUTELY NIAMS CAN 6331 04:06:13,925 --> 04:06:15,360 FUND SOME PROJECTS THAT RELATE 6332 04:06:15,427 --> 04:06:15,694 TO AGING. 6333 04:06:15,760 --> 04:06:19,764 THEY DON'T HAVE TO ALL GO TO 6334 04:06:19,831 --> 04:06:20,966 NIA. 6335 04:06:21,032 --> 04:06:22,067 IT DEPENDS ON OVERALL SCOPE. 6336 04:06:22,134 --> 04:06:25,770 ALL THAT COULD BE ONE REASON FOR 6337 04:06:25,837 --> 04:06:27,672 HAVING SECONDARY -- RECOMMENDING 6338 04:06:27,739 --> 04:06:28,974 SECONDARY INSTITUTES, IF IT GOES 6339 04:06:29,040 --> 04:06:30,108 INITIALLY TO NIA AND THEY ARE 6340 04:06:30,175 --> 04:06:31,376 NOT PARTICULARLY INTERESTED, IT 6341 04:06:31,443 --> 04:06:32,577 WAS A TOPIC WE WERE VERY 6342 04:06:32,644 --> 04:06:34,112 INTERESTED IN, THE ISSUE OF THE 6343 04:06:34,179 --> 04:06:36,414 R21 GRANTS HAS BEEN CHALLENGING 6344 04:06:36,481 --> 04:06:38,383 FOR US BECAUSE -- IN FACT THAT'S 6345 04:06:38,450 --> 04:06:40,252 WHY WE CHANGED OUR POLICY ABOUT 6346 04:06:40,318 --> 04:06:42,287 R21, BECAUSE WE WERE RECEIVING 6347 04:06:42,354 --> 04:06:43,955 R21 GRANTS OUTSIDE OF OUR 6348 04:06:44,022 --> 04:06:46,358 MISSION AREAS BECAUSE VARIOUS 6349 04:06:46,424 --> 04:06:47,325 INSTITUTES AND CENTERS HAD 6350 04:06:47,392 --> 04:06:48,426 STOPPED FUNDING THOSE. 6351 04:06:48,493 --> 04:06:50,295 THAT'S AN ISSUE THAT WE'VE 6352 04:06:50,362 --> 04:06:51,930 ADDRESSED PRETTY WELL NOW. 6353 04:06:51,997 --> 04:06:53,465 BUT I DON'T KNOW WHETHER ANY 6354 04:06:53,532 --> 04:06:55,133 COLLEAGUES THINK ABOUT THIS ALL 6355 04:06:55,200 --> 04:06:57,736 THE TIME, REFERRAL GUIDELINES 6356 04:06:57,802 --> 04:07:00,472 WANT TO ADD, GAYLE? 6357 04:07:00,539 --> 04:07:02,140 >> YEAH, ONE THING YOU RUN INTO 6358 04:07:02,207 --> 04:07:04,509 IS THE FACT THAT A LOT OF 6359 04:07:04,576 --> 04:07:05,710 INSTITUTES DON'T PARTICIPATE IN 6360 04:07:05,777 --> 04:07:08,013 THE R21. 6361 04:07:08,079 --> 04:07:11,183 AND IN THOSE CASES, THEY 6362 04:07:11,249 --> 04:07:13,118 WOULD -- THE REFERRAL FOLKS AT 6363 04:07:13,185 --> 04:07:19,624 CSR WOULD LOOK FOR THE NEXT 6364 04:07:19,691 --> 04:07:20,592 APPROPRIATE INSTITUTE, SO YOU 6365 04:07:20,659 --> 04:07:22,661 CAN TRY TO TARGET WITH YOUR 6366 04:07:22,727 --> 04:07:25,297 LANGUAGE WHEN YOU WRITE UP OUR 6367 04:07:25,363 --> 04:07:26,498 INTRODUCTION AND MAYBE BROADEN 6368 04:07:26,565 --> 04:07:30,335 THE SCOPE OF WHAT COULD BE 6369 04:07:30,402 --> 04:07:31,636 APPLICABLE FOR YOUR APPLICATION 6370 04:07:31,703 --> 04:07:33,838 TO BE ASSIGNED TO, INSTITUTES IT 6371 04:07:33,905 --> 04:07:34,940 COULD BE APPROPRIATE. 6372 04:07:35,006 --> 04:07:36,808 SO, THOSE ARE THE KIND OF THINGS 6373 04:07:36,875 --> 04:07:42,047 YOU MIGHT WANT TO TALK ABOUT 6374 04:07:42,113 --> 04:07:44,916 WITH EITHER AARON MARKOWITZ IN 6375 04:07:44,983 --> 04:07:46,985 NIAMS OR TALK WITH NHLBI PROGRAM 6376 04:07:47,052 --> 04:07:49,588 DIRECTORS ABOUT HOW TO BE SURE 6377 04:07:49,654 --> 04:07:51,423 THAT THIS FINDS A HOME. 6378 04:07:51,489 --> 04:07:54,626 A LOT OF TIMES WE JUST DON'T GET 6379 04:07:54,693 --> 04:07:54,826 THESE. 6380 04:07:54,893 --> 04:07:59,231 SO THEY ARE NOT SENT TO US AS AN 6381 04:07:59,297 --> 04:07:59,464 OPTION. 6382 04:07:59,531 --> 04:08:00,899 >> MY UNDERSTANDING, ALL GRANTS 6383 04:08:00,966 --> 04:08:03,401 HAVE TO GO SOMEWHERE, RIGHT? 6384 04:08:03,468 --> 04:08:08,006 THAT'S WHERE SOME CHALLENGES -- 6385 04:08:08,073 --> 04:08:09,641 YEAH. 6386 04:08:09,708 --> 04:08:12,377 I KNOW DR. HARRIS-TRYON HAS A 6387 04:08:12,444 --> 04:08:12,711 HAND UP. 6388 04:08:12,777 --> 04:08:13,812 WAS ANYBODY ELSE GOING TO 6389 04:08:13,878 --> 04:08:17,616 RESPOND TO THIS CURRENT POINT 6390 04:08:17,682 --> 04:08:20,252 BEFORE WE MOVE TO -- OKAY. 6391 04:08:20,318 --> 04:08:24,189 IN THAT CASE, PLEASE, NEXT 6392 04:08:24,256 --> 04:08:24,522 QUESTION. 6393 04:08:24,589 --> 04:08:26,491 >> THIS IS TAMIA. 6394 04:08:26,558 --> 04:08:28,493 IN A SIMILAR VAIN, I'M SO 6395 04:08:28,560 --> 04:08:30,028 EXCITED TO SEE BEHAVIOR AND 6396 04:08:30,095 --> 04:08:32,197 ENVIRONMENT INCLUDED AS SOMEONE 6397 04:08:32,264 --> 04:08:36,701 WHO STUDIES THE SKIN MICROBIOME, 6398 04:08:36,768 --> 04:08:37,902 IT CANNOT BE UNTANGLED, IT'S 6399 04:08:37,969 --> 04:08:39,371 GREAT TO SEE THE INITIATIVES IN 6400 04:08:39,437 --> 04:08:39,971 THE STRATEGIC PLAN. 6401 04:08:40,038 --> 04:08:41,072 >> SINCE YOU ARE MENTIONED THIS 6402 04:08:41,139 --> 04:08:42,707 AGAIN ONE OF THE THINGS THAT 6403 04:08:42,774 --> 04:08:44,576 STRUCK ME FOLLOWING THAT IDEA 6404 04:08:44,643 --> 04:08:45,877 GENERATION MEETING IS TWO THEMES 6405 04:08:45,944 --> 04:08:48,313 THAT REALLY STOOD OUT TO ME, 6406 04:08:48,380 --> 04:08:50,181 AMONG MANY OTHERS, WAS MORE 6407 04:08:50,248 --> 04:08:51,883 INTERESTED EMPHASIS ON THE 6408 04:08:51,950 --> 04:08:53,251 ENVIRONMENT AND MORE INTEREST 6409 04:08:53,318 --> 04:08:56,655 AND CONCERN ABOUT 6410 04:08:56,721 --> 04:08:57,022 INFRASTRUCTURE. 6411 04:08:57,088 --> 04:08:58,156 AND SAYING INSTITUTES DO 6412 04:08:58,223 --> 04:08:59,024 EVERYTHING TO SUPPORT 6413 04:08:59,090 --> 04:09:01,326 INFRASTRUCTURE SO WE DON'T HAVE 6414 04:09:01,393 --> 04:09:02,427 INDIVIDUAL INVESTIGATORS AND 6415 04:09:02,494 --> 04:09:03,128 INSTITUTIONS TRYING TO RECREATE 6416 04:09:03,194 --> 04:09:05,397 EVERYTHING ON THEIR OWN. 6417 04:09:05,463 --> 04:09:07,265 WE HEARD THAT CALL LOUD AND 6418 04:09:07,332 --> 04:09:12,270 CLEAR. 6419 04:09:12,337 --> 04:09:13,805 OTHER -- YES, TEO. 6420 04:09:13,872 --> 04:09:15,974 >> THANK YOU, YOU'VE DONE A 6421 04:09:16,041 --> 04:09:18,176 REALLY TREMENDOUS JOB PULLING 6422 04:09:18,243 --> 04:09:19,911 THIS FEEDBACK TOGETHER INTO THIS 6423 04:09:19,978 --> 04:09:21,913 DRAFT PLAN. 6424 04:09:21,980 --> 04:09:23,415 MY QUESTION WAS THE DISCUSSIONS 6425 04:09:23,481 --> 04:09:26,918 EARLIER THIS MORNING ON PATIENT 6426 04:09:26,985 --> 04:09:28,720 ENGAGEMENT AND RECOMMENDATIONS 6427 04:09:28,787 --> 04:09:31,656 ON CHANGES TO THE CLINICAL 6428 04:09:31,723 --> 04:09:32,557 TRIALS SUPPORTED THROUGH NIAMS, 6429 04:09:32,624 --> 04:09:33,958 IS THAT GOING TO BE INTEGRATED 6430 04:09:34,025 --> 04:09:35,827 INTO THE STRATEGIC PLAN OR WILL 6431 04:09:35,894 --> 04:09:37,462 THAT BE DONE IN PARALLEL ONCE 6432 04:09:37,529 --> 04:09:44,436 THE STRATEGIC PLAN IS BEING 6433 04:09:44,502 --> 04:09:44,736 IMPLEMENTED? 6434 04:09:44,803 --> 04:09:46,438 >> SO, CERTAINLY WE WILL TAKE -- 6435 04:09:46,504 --> 04:09:47,739 INCORPORATE THE FEEDBACK WE 6436 04:09:47,806 --> 04:09:50,809 RECEIVED TODAY FROM COUNCIL AND 6437 04:09:50,875 --> 04:09:52,243 YOU'LL NOTICE A SECTION, WE LEFT 6438 04:09:52,310 --> 04:09:55,080 A PLACE HOLDER TO DESCRIBE SOME 6439 04:09:55,146 --> 04:09:57,048 OPPORTUNITIES UNTIL AFTER THIS 6440 04:09:57,115 --> 04:09:57,349 MEETING. 6441 04:09:57,415 --> 04:09:59,451 YES, WE CONSIDER THIS TO BE PART 6442 04:09:59,517 --> 04:10:05,890 OF WHAT'S INFORMING WHAT WILL BE 6443 04:10:05,957 --> 04:10:07,192 INCLUDED IN THE PLAN. 6444 04:10:07,258 --> 04:10:08,326 >> OTHER THOUGHTS THIS? 6445 04:10:08,393 --> 04:10:12,464 RECOGNIZE THAT MOST OF YOU 6446 04:10:12,530 --> 04:10:13,832 HAVEN'T SEEN THIS DRAFT. 6447 04:10:13,898 --> 04:10:16,768 ANY OTHER THINGS YOU DIDN'T 6448 04:10:16,835 --> 04:10:23,007 HEAR, THINGS YOU WANT CLARIFIED? 6449 04:10:23,074 --> 04:10:24,442 COMMENTS FROM OTHERS ON THE 6450 04:10:24,509 --> 04:10:27,045 NIAMS TEAM IN TERMS OF THE 6451 04:10:27,112 --> 04:10:29,581 PROCESS OR ISSUES THAT YOU 6452 04:10:29,647 --> 04:10:32,751 THOUGHT WERE VERY PROMINENT? 6453 04:10:32,817 --> 04:10:33,952 YEAH, JONELLE? 6454 04:10:34,018 --> 04:10:35,920 >> SO SINCE WE DEFINITELY WANT 6455 04:10:35,987 --> 04:10:37,122 COUNCIL'S COMMENTS I'M GOING TO 6456 04:10:37,188 --> 04:10:40,825 HAVE TO WORK WITH OUR 6457 04:10:40,892 --> 04:10:43,128 COMMUNICATIONS AND COPY EDITOR 6458 04:10:43,194 --> 04:10:47,432 FOLKS ON HOW TO GET THEIR 6459 04:10:47,499 --> 04:10:48,299 FEEDBACK BUT WE DEFINITELY, 6460 04:10:48,366 --> 04:10:54,973 SINCE SO MANY OF YOU DIDN'T GET 6461 04:10:55,039 --> 04:10:56,040 THE VERSE TO REVIEW, WE 6462 04:10:56,107 --> 04:10:57,041 DEFINITELY NEED TO GIVE YOU 6463 04:10:57,108 --> 04:10:59,544 ANOTHER WEEK. 6464 04:10:59,611 --> 04:11:01,513 I'M GOING TO TAKE THE 6465 04:11:01,579 --> 04:11:02,313 INITIATIVE, INSTEAD OF WAITING 6466 04:11:02,380 --> 04:11:03,782 TO TALK TO STEPHANIE ABOUT IT 6467 04:11:03,848 --> 04:11:05,917 JUST SAY INSTEAD OF THE 4th 6468 04:11:05,984 --> 04:11:07,852 HAVE ANOTHER WEEK AND DO IT THE 6469 04:11:07,919 --> 04:11:12,023 12th AND WE'LL FIGURE OUT HOW 6470 04:11:12,090 --> 04:11:14,659 TO GET IT REVIEWED SO WE'RE ON 6471 04:11:14,726 --> 04:11:15,427 OUR DEADLINE. 6472 04:11:15,493 --> 04:11:17,829 WE THOUGHT WE GAVE YOU PLENTY OF 6473 04:11:17,896 --> 04:11:18,363 TIME. 6474 04:11:18,430 --> 04:11:20,698 IF YOU CAN'T OPEN THE FILE, YOU 6475 04:11:20,765 --> 04:11:22,333 CAN'T OPEN THE FILE. 6476 04:11:22,400 --> 04:11:26,604 >> YOU SHOULD ALL HAVE JUST 6477 04:11:26,671 --> 04:11:29,374 RECEIVED AN E-MAIL FROM SHOLANDA 6478 04:11:29,441 --> 04:11:30,909 WITH THE DOCUMENTS. 6479 04:11:30,975 --> 04:11:34,279 YOU HAVE IT AS OF NOW AND 6480 04:11:34,345 --> 04:11:35,480 JONELLE WILL BE COUNTING DOWN 6481 04:11:35,547 --> 04:11:36,581 YOUR TIME. 6482 04:11:36,648 --> 04:11:39,651 >> I'LL START RIGHT NOW. 6483 04:11:39,717 --> 04:11:41,719 >> I'M JUST REMINDED THAT I JUST 6484 04:11:41,786 --> 04:11:44,789 WANT TO ACKNOWLEDGE ONE OF OUR 6485 04:11:44,856 --> 04:11:45,990 GUESTS TODAY, AMY PAYNE, DR. AMY 6486 04:11:46,057 --> 04:11:48,626 PAYNE, WHO HAS HELPED THE 6487 04:11:48,693 --> 04:11:51,129 INSTITUTE IN MANY WAYS INCLUDING 6488 04:11:51,196 --> 04:11:53,331 MOST RECENTLY AS THE CHAIR OF 6489 04:11:53,398 --> 04:11:55,733 OUR BOARD OF SCIENTIFIC 6490 04:11:55,800 --> 04:11:56,801 COUNSELORS AND, AMY, IF YOU'RE 6491 04:11:56,868 --> 04:12:01,406 NOT IN A PLACE TO TURN ON YOUR 6492 04:12:01,473 --> 04:12:02,073 CAMERA, NO PRESSURE. 6493 04:12:02,140 --> 04:12:03,942 THANK YOU SO MUCH FOR JOINING 6494 04:12:04,008 --> 04:12:04,209 US. 6495 04:12:04,275 --> 04:12:06,044 YOU HAVE HELPED THE INSTITUTES 6496 04:12:06,110 --> 04:12:09,080 IN SO MANY WAYS. 6497 04:12:09,147 --> 04:12:10,114 AND REALLY APPRECIATE YOUR 6498 04:12:10,181 --> 04:12:10,648 INTEREST. 6499 04:12:10,715 --> 04:12:12,217 YOU SHOULD FEEL FREE TO SPEAK UP 6500 04:12:12,283 --> 04:12:13,485 ABOUT -- I DON'T KNOW IF YOU SAW 6501 04:12:13,551 --> 04:12:15,887 THE DRAFT PLAN OR NOT OR JUST IF 6502 04:12:15,954 --> 04:12:17,589 YOU HAVE ANY COMMENTS NOW OR 6503 04:12:17,655 --> 04:12:19,958 MOVING FORWARD THAT WOULD BE 6504 04:12:20,024 --> 04:12:20,191 GREAT. 6505 04:12:20,258 --> 04:12:20,792 >> ABSOLUTELY. 6506 04:12:20,859 --> 04:12:25,430 THANK YOU SO MUCH. 6507 04:12:25,497 --> 04:12:26,898 I'M TECHNICALLY AN OBSERVER, WHY 6508 04:12:26,965 --> 04:12:28,733 I WAS KEEPING MY CAMERA OFF. 6509 04:12:28,800 --> 04:12:30,368 IT'S BEEN WONDERFUL WORKING WITH 6510 04:12:30,435 --> 04:12:30,568 NIAMS. 6511 04:12:30,635 --> 04:12:32,737 THANK YOU FOR THE OPPORTUNITY TO 6512 04:12:32,804 --> 04:12:33,972 SERVE ON THE COUNCIL GOING 6513 04:12:34,038 --> 04:12:34,205 FORWARD. 6514 04:12:34,272 --> 04:12:36,708 I THOUGHT THE DRAFT PLAN CAN A 6515 04:12:36,774 --> 04:12:39,344 GREAT JOB TRYING TO ADDRESS 6516 04:12:39,410 --> 04:12:41,079 CROSS-CUTTING INITIATIVES, TO 6517 04:12:41,145 --> 04:12:42,413 INTEGRATE THE BONE BIOLOGY 6518 04:12:42,480 --> 04:12:44,048 RHEUMATIC AND SKIN DISEASE 6519 04:12:44,115 --> 04:12:44,315 COMMUNITY. 6520 04:12:44,382 --> 04:12:49,854 I THINK THOSE ARE REALLY GREAT 6521 04:12:49,921 --> 04:12:55,527 OPPORTUNITIES I LIKE HOW YOU 6522 04:12:55,593 --> 04:12:59,163 INVESTED IN INFRASTRUCTURE AND 6523 04:12:59,230 --> 04:13:00,365 TRAINEES, AN AREA OF OPPORTUNITY 6524 04:13:00,431 --> 04:13:03,001 AND THREAT, WE HAVE ALL THESE 6525 04:13:03,067 --> 04:13:04,402 EXCITING THERAPIES THAT ARE 6526 04:13:04,469 --> 04:13:07,739 POTENTIALLY COMING TO TRIALS AND 6527 04:13:07,805 --> 04:13:09,274 MANY SPECIALTIES SAYING WE DON'T 6528 04:13:09,340 --> 04:13:10,308 HAVE CLINICAL INVESTIGATORS TO 6529 04:13:10,375 --> 04:13:12,777 RUN THESE TRIALS TO DO THAT. 6530 04:13:12,844 --> 04:13:14,145 I THINK ONE THING THAT WE 6531 04:13:14,212 --> 04:13:16,180 THOUGHT ABOUT WAS WHETHER OR NOT 6532 04:13:16,247 --> 04:13:19,884 THERE MIGHT BE OPPORTUNITIES TO 6533 04:13:19,951 --> 04:13:21,753 ALMOST CO-INVEST IN SOME 6534 04:13:21,819 --> 04:13:22,720 TRAINING OPPORTUNITIES FOR 6535 04:13:22,787 --> 04:13:27,325 CLINICAL INVESTIGATORS AND EVEN 6536 04:13:27,392 --> 04:13:27,992 TRANSLATIONAL INVESTIGATORS 6537 04:13:28,059 --> 04:13:32,130 BETWEEN GOVERNMENT, MAYBE 6538 04:13:32,196 --> 04:13:35,199 THROUGH A K/INDIVIDUAL F AWARD 6539 04:13:35,266 --> 04:13:38,036 AND INDUSTRY TO CO-SPONSOR 6540 04:13:38,102 --> 04:13:40,238 BECAUSE A LOT OF INDUSTRY WILL 6541 04:13:40,305 --> 04:13:41,873 IDENTIFY THEY OFFER INTERNAL 6542 04:13:41,940 --> 04:13:43,141 POSTDOCTORAL PROGRAMS, AT THE 6543 04:13:43,207 --> 04:13:45,910 SAME TIME RECOGNIZE PERHAPS THEY 6544 04:13:45,977 --> 04:13:47,679 DON'T HAVE THE STRUCTURES TO 6545 04:13:47,745 --> 04:13:49,013 FULLY SUPPORT THAT TYPE OF 6546 04:13:49,080 --> 04:13:49,280 TRAINING. 6547 04:13:49,347 --> 04:13:51,316 SO THAT MIGHT BE A REALLY GOOD 6548 04:13:51,382 --> 04:13:52,317 AREA OF PARTNERSHIP. 6549 04:13:52,383 --> 04:13:53,952 AND THEN THE ONLY OTHER PIECE OF 6550 04:13:54,018 --> 04:13:56,187 FEEDBACK I HEARD AS WELL WAS TO 6551 04:13:56,254 --> 04:14:00,892 MAKE SURE WE'RE NOT TOO 6552 04:14:00,959 --> 04:14:02,527 DIRECTIVE ON THE HUMAN RELEVANCE 6553 04:14:02,594 --> 04:14:04,929 BECAUSE A LOT OF THINGS THAT WE 6554 04:14:04,996 --> 04:14:07,999 LEARN COME FROM UNEXPECTED AREAS 6555 04:14:08,066 --> 04:14:12,003 TO OPEN IT UP THAT A LOT OF OF 6556 04:14:12,070 --> 04:14:15,206 OUR LEARNING CAN COME FROM MODEL 6557 04:14:15,273 --> 04:14:17,075 SYSTEMS, COMPARING AND 6558 04:14:17,141 --> 04:14:17,709 CONTRASTING COMPARATIVE 6559 04:14:17,775 --> 04:14:18,376 IMMUNOLOGY, COMPARATIVE BIOLOGY, 6560 04:14:18,443 --> 04:14:20,778 ET CETERA, SO JUST KEEPING OPEN, 6561 04:14:20,845 --> 04:14:22,880 AN OPEN FRAMEWORK FOR JUST 6562 04:14:22,947 --> 04:14:25,283 DISCOVERY IN GENERAL TO MOVE 6563 04:14:25,350 --> 04:14:25,950 FORWARD SCIENCE. 6564 04:14:26,017 --> 04:14:31,189 >> THANK YOU FOR THOSE COMMENTS. 6565 04:14:31,255 --> 04:14:32,824 FEEL FREE TO SEND IN WRITTEN 6566 04:14:32,890 --> 04:14:35,693 COMMENTS IF YOU THINK WE HAVE AN 6567 04:14:35,760 --> 04:14:37,228 OPPORTUNITY TO HIGHLIGHT THAT 6568 04:14:37,295 --> 04:14:37,795 MORE SIGNIFICANTLY. 6569 04:14:37,862 --> 04:14:42,567 SO THANK YOU SO MUCH. 6570 04:14:42,634 --> 04:14:43,768 ANY OTHER COMMENTS AT THIS 6571 04:14:43,835 --> 04:14:51,876 POINT? 6572 04:14:51,943 --> 04:14:52,410 OKAY. 6573 04:14:52,477 --> 04:14:58,116 I'M LOOKING AT THE AGENDA. 6574 04:14:58,182 --> 04:15:02,820 YEAH, WE HAVE UNTIL 3:00. 6575 04:15:02,887 --> 04:15:05,556 WE'LL CLOSE THAT PART OF OUR 6576 04:15:05,623 --> 04:15:07,358 MEETING BUT IF IN THE REMAINING 6577 04:15:07,425 --> 04:15:08,726 MINUTES OTHER IDEAS COME UP WITH 6578 04:15:08,793 --> 04:15:10,061 THE STRATEGIC PLAN PLEASE FEEL 6579 04:15:10,128 --> 04:15:10,395 FREE. 6580 04:15:10,461 --> 04:15:11,462 WE CAN CIRCLE BACK. 6581 04:15:11,529 --> 04:15:14,098 WE HAVE SOME TIME NOW. 6582 04:15:14,165 --> 04:15:16,067 AS MUCH AS YOU'D LIKE, AT LEAST 6583 04:15:16,134 --> 04:15:19,003 UNTIL 3:00, BUT NOT NECESSARILY 6584 04:15:19,070 --> 04:15:20,872 UNTIL 3:00. 6585 04:15:20,938 --> 04:15:23,374 IT'S NOT NECESSARY FOR YOU TO 6586 04:15:23,441 --> 04:15:25,777 CIRCLE BACK TO PREVIOUS TOPICS 6587 04:15:25,843 --> 04:15:28,646 DURING THE MEETING, NEW ISSUES, 6588 04:15:28,713 --> 04:15:30,715 THINGS YOU'D LIKE TO HEAR ABOUT, 6589 04:15:30,782 --> 04:15:34,552 THINGS WE CAN PREPARE AND HELP 6590 04:15:34,619 --> 04:15:35,887 YOU UNDERSTAND ACTIVITIES AT THE 6591 04:15:35,953 --> 04:15:38,489 NIH, ET CETERA. 6592 04:15:38,556 --> 04:15:38,756 VALENTINA? 6593 04:15:38,823 --> 04:15:40,358 >> YEAH, TO CIRCLE BACK TO THE 6594 04:15:40,425 --> 04:15:42,960 CLINICAL TRIAL AND DISCUSSION WE 6595 04:15:43,027 --> 04:15:47,031 HAD, WHETHER THE COUNCIL SHOULD 6596 04:15:47,098 --> 04:15:48,966 DISCUSS CERTAIN CLINICAL TRIAL, 6597 04:15:49,033 --> 04:15:51,102 EVALUATE IMPACT. 6598 04:15:51,169 --> 04:15:53,471 MAYBE WANTED TO OPEN MORE 6599 04:15:53,538 --> 04:16:00,978 REFLECTION FIRST ON THE 6600 04:16:01,045 --> 04:16:02,814 COMPOSITION OF THE COUNCIL, TO 6601 04:16:02,880 --> 04:16:03,815 CLINICAL IMPACT TO PATIENTS, 6602 04:16:03,881 --> 04:16:08,820 WHAT DOES IT MEAN FOR US TO HAVE 6603 04:16:08,886 --> 04:16:12,457 TO RECRUIT COMPETENCE TO MAKE 6604 04:16:12,523 --> 04:16:19,597 REFLECTION ON THAT, WILL WE 6605 04:16:19,664 --> 04:16:23,835 SHIFT COMPOSITION, OR BASED ON 6606 04:16:23,901 --> 04:16:25,203 PRINCIPLE, WHETHER COUNCIL WAS 6607 04:16:25,269 --> 04:16:26,571 THE RIGHT DECISION, WHAT ARE WE 6608 04:16:26,637 --> 04:16:30,641 GOING TO DO IN ORDER TO BE 6609 04:16:30,708 --> 04:16:32,810 THOUGHTFUL ABOUT IT, AND SECOND 6610 04:16:32,877 --> 04:16:33,678 GENERALLY IN THE STRATEGIC 6611 04:16:33,745 --> 04:16:36,647 PLANNING IN GENERAL WOULD LOVE 6612 04:16:36,714 --> 04:16:39,684 TO ECHO WHAT AIMEE WAS SAYING, 6613 04:16:39,751 --> 04:16:43,121 CONTINUE TO HAVE AN INVESTMENT 6614 04:16:43,187 --> 04:16:45,490 ON, YOU KNOW, RESEARCH R01 6615 04:16:45,556 --> 04:16:48,059 BASED, A LOT OF RESOURCES 6616 04:16:48,126 --> 04:16:49,227 BECAUSE WE NEVER KNOW WHERE 6617 04:16:49,293 --> 04:16:50,862 INNOVATION COMES FROM. 6618 04:16:50,928 --> 04:16:54,999 AND BY CLOSING AND CREATING MORE 6619 04:16:55,066 --> 04:16:57,101 SELECTIVE INVESTMENT ON CERTAIN 6620 04:16:57,168 --> 04:16:58,669 THINGS THAT APPLY WILL REMOVE 6621 04:16:58,736 --> 04:17:01,372 BASIC RESEARCH IN ORDER FOR US 6622 04:17:01,439 --> 04:17:06,077 TO KNOW TWO YEARS FROM NOW, 6623 04:17:06,144 --> 04:17:07,378 COUNTER ACT THE NEXT PANDEMIC 6624 04:17:07,445 --> 04:17:08,513 AND SUCH. 6625 04:17:08,579 --> 04:17:10,248 >> REGARDING THE FIRST ISSUE, 6626 04:17:10,314 --> 04:17:11,783 ABOUT THE COMPOSITION AND, 6627 04:17:11,849 --> 04:17:12,884 QUOTE, COMPETENCE OF COUNCIL AND 6628 04:17:12,950 --> 04:17:14,418 BOB WANTS TO TAKE THAT QUESTION. 6629 04:17:14,485 --> 04:17:18,022 AS SOME OF YOU MAY BE AWARE, 6630 04:17:18,089 --> 04:17:19,857 THERE HAS BEEN AN UNFORTUNATE 6631 04:17:19,924 --> 04:17:24,195 BACKLOG FOR A NUMBER OF YEARS IN 6632 04:17:24,262 --> 04:17:26,264 COUNCIL SLATE APPROVALS. 6633 04:17:26,330 --> 04:17:27,465 BUT THE DEPARTMENT IS CATCHING 6634 04:17:27,532 --> 04:17:34,238 UP AND IN FACT SO WE HAVE DR. 6635 04:17:34,305 --> 04:17:37,208 JEPSEN AND SEVEN PEOPLE IN THE 6636 04:17:37,275 --> 04:17:38,943 QUEUE WHO WE HOPE WILL JOIN US 6637 04:17:39,010 --> 04:17:40,044 IN SEPTEMBER. 6638 04:17:40,111 --> 04:17:42,113 THE COUNCIL IS SMALLER THAN EVER 6639 04:17:42,180 --> 04:17:43,347 RIGHT NOW. 6640 04:17:43,414 --> 04:17:44,215 THAT DOESN'T NECESSARILY MEAN 6641 04:17:44,282 --> 04:17:45,917 WE'RE ALWAYS GOING TO HAVE -- AN 6642 04:17:45,983 --> 04:17:47,351 WE GIVE A LOT OF THOUGHT AND 6643 04:17:47,418 --> 04:17:51,522 THERE'S A LOT OF OVERSIGHT WITH 6644 04:17:51,589 --> 04:17:52,890 RESPECT TO REPRESENTATIVENESS OF 6645 04:17:52,957 --> 04:17:55,793 THE COUNCIL, COMPOSITION IN ALL 6646 04:17:55,860 --> 04:17:56,627 RESPECTS, GEOGRAPHY, BACKGROUND, 6647 04:17:56,694 --> 04:17:58,763 SCIENTIFIC AREA, ET CETERA. 6648 04:17:58,830 --> 04:18:00,598 SO THAT DOESN'T NECESSARILY 6649 04:18:00,665 --> 04:18:02,033 SATISFY WHAT YOUR POINT IS BUT 6650 04:18:02,099 --> 04:18:04,902 BOB YOU WANTED TO SPEAK TO THAT 6651 04:18:04,969 --> 04:18:05,303 FIRST. 6652 04:18:05,369 --> 04:18:06,304 >> THERE'S AN ISSUE WITH A 6653 04:18:06,370 --> 04:18:09,040 LITTLE TWIST ON WHERE YOU PUT 6654 04:18:09,106 --> 04:18:09,273 THINGS. 6655 04:18:09,340 --> 04:18:15,046 YOU KNOW, THE WAY JOAN EXPRESSED 6656 04:18:15,112 --> 04:18:19,884 IT, EXPERTISE IN STUDY SECTION, 6657 04:18:19,951 --> 04:18:20,651 STUDY SECTION RECRUITS AD HOC 6658 04:18:20,718 --> 04:18:22,053 MEMBERS TO HAVE THE EXPERTISE TO 6659 04:18:22,119 --> 04:18:24,589 COVER. 6660 04:18:24,655 --> 04:18:27,091 YOU MAY HAVE NOTICED THE 6661 04:18:27,158 --> 04:18:28,726 SIDEBAR, YOU SIT DOWN ON STUDY 6662 04:18:28,793 --> 04:18:30,328 SECTION, YOU HEAR THE PEOPLE WHO 6663 04:18:30,394 --> 04:18:32,129 REALLY ARE CLOSE TO THE FIELD 6664 04:18:32,196 --> 04:18:36,400 SAYING, YEAH, WE GOT TO DO THIS. 6665 04:18:36,467 --> 04:18:38,703 BUT YOU KNOW THE AREA. 6666 04:18:38,769 --> 04:18:41,539 FOR ME LET'S SAY RHEUMATOLOGY 6667 04:18:41,606 --> 04:18:44,942 BUT MAYBE NOT VASCULITIS, AS A 6668 04:18:45,009 --> 04:18:45,910 RHEUMATOLOGIST, THAT MAY BE 6669 04:18:45,977 --> 04:18:47,245 IMPORTANT TO PEOPLE WHO FOCUSED 6670 04:18:47,311 --> 04:18:50,181 ON THAT FIELD BUT IN THE BIGGER 6671 04:18:50,248 --> 04:18:50,748 SCHEME MAYBE NOT. 6672 04:18:50,815 --> 04:18:52,917 AND THAT'S WHERE WE'RE LOOKING 6673 04:18:52,984 --> 04:18:54,452 FOR COUNCIL INPUT. 6674 04:18:54,518 --> 04:18:57,388 IT'S NOT AT THAT REALLY GRANULAR 6675 04:18:57,455 --> 04:18:58,823 LEVEL OF EXPERTISE. 6676 04:18:58,890 --> 04:19:01,359 COUNCIL IS MADE UP OF PRETTY 6677 04:19:01,425 --> 04:19:03,995 SENIOR PEOPLE WITH AD HOCS TO 6678 04:19:04,061 --> 04:19:06,163 BRING IN THE JUNIOR -- WHATEVER 6679 04:19:06,230 --> 04:19:08,933 THE RIGHT WORD IS, PERSPECTIVE. 6680 04:19:09,000 --> 04:19:10,334 BUT THE COUNCIL MEMBERS ARE 6681 04:19:10,401 --> 04:19:12,203 REQUIRED TO HAVE PRETTY BROAD 6682 04:19:12,270 --> 04:19:12,603 EXPERTISE. 6683 04:19:12,670 --> 04:19:15,406 AND WHAT WE'RE DOING IS TAKING 6684 04:19:15,473 --> 04:19:21,379 ADVANTAGE OF THAT MORE THAN THE 6685 04:19:21,445 --> 04:19:28,152 REALLY FINE BOOK EXPERTISE. 6686 04:19:28,219 --> 04:19:28,819 >> ANN? 6687 04:19:28,886 --> 04:19:30,154 >> THOUGHTS ON COUNCIL'S ROLE ON 6688 04:19:30,221 --> 04:19:32,423 IMPACT, I WOULD THINK, I WOULD 6689 04:19:32,490 --> 04:19:35,593 HOPE, THAT STAFF WOULD GIVE SOME 6690 04:19:35,660 --> 04:19:37,361 RECOMMENDATIONS AND SOME 6691 04:19:37,428 --> 04:19:39,664 CONTEXT. 6692 04:19:39,730 --> 04:19:43,167 >> THAT'S PART OF IT. 6693 04:19:43,234 --> 04:19:45,770 >> SO WHAT HAPPENS CURRENTLY FOR 6694 04:19:45,836 --> 04:19:47,438 CLINICAL TRIALS AND OTHER 6695 04:19:47,505 --> 04:19:50,041 APPLICATIONS THAT ARE REVIEWED 6696 04:19:50,107 --> 04:19:53,544 INTERNALLY IS OUR INTERNAL STUDY 6697 04:19:53,611 --> 04:19:56,080 SECTIONS SCORE THEM, THEY ARE 6698 04:19:56,147 --> 04:19:57,181 DISCUSSED, WITH LEADERSHIP, ET 6699 04:19:57,248 --> 04:19:59,383 CETERA, AND THE PROGRAM 6700 04:19:59,450 --> 04:20:00,484 OFFICERS, RELEVANT PROGRAM 6701 04:20:00,551 --> 04:20:01,786 OFFICERS, WRITE OUT A 6702 04:20:01,852 --> 04:20:02,853 RECOMMENDATION, CRITIQUE. 6703 04:20:02,920 --> 04:20:05,523 AND THEN WE DISCUSS IT. 6704 04:20:05,589 --> 04:20:07,491 SO, WE'RE REALLY TALKING ABOUT 6705 04:20:07,558 --> 04:20:08,993 INCLUDING COUNCIL MEMBERS, A 6706 04:20:09,060 --> 04:20:11,295 SUBSET OF COUNCIL MEMBERS IN AT 6707 04:20:11,362 --> 04:20:12,063 THAT POINT. 6708 04:20:12,129 --> 04:20:14,365 AND, YOU KNOW, WE CONSIDER THE 6709 04:20:14,432 --> 04:20:16,100 SCORE BUT WE CONSIDER A LOT OF 6710 04:20:16,167 --> 04:20:17,101 OTHER THINGS. 6711 04:20:17,168 --> 04:20:20,371 AND WE COUNT ON THE PROGRAM 6712 04:20:20,438 --> 04:20:22,340 OFFICER TO HAVE DUG DEEPER. 6713 04:20:22,406 --> 04:20:24,542 OFTEN THEY WERE IN REVIE 6714 04:20:24,608 --> 04:20:26,610 COMMITTEE MEETING, THEY HAVE 6715 04:20:26,677 --> 04:20:27,378 COMMUNICATED WITH THE 6716 04:20:27,445 --> 04:20:28,679 INVESTIGATOR, THEY KNOW THE 6717 04:20:28,746 --> 04:20:31,082 FIELD VERY WELL. 6718 04:20:31,148 --> 04:20:36,454 SO, I GUESS I'M INTERESTED IN 6719 04:20:36,520 --> 04:20:37,989 HEARING FROM YOU, YOU ALL FEEL 6720 04:20:38,055 --> 04:20:39,824 DIFFERENTLY, IS THIS A ROLE, NOT 6721 04:20:39,890 --> 04:20:41,025 SPECIFICALLY DEFINED YET, THAT 6722 04:20:41,092 --> 04:20:42,994 HE WOULD EMBRACE AND FEEL 6723 04:20:43,060 --> 04:20:44,562 COMFORTABLE WITH, YOU KNOW, SO 6724 04:20:44,628 --> 04:20:47,064 WHAT WE'RE TALKING ABOUT IS 6725 04:20:47,131 --> 04:20:48,699 HELPING WEIGH IN, BEING ANOTHER 6726 04:20:48,766 --> 04:20:50,901 BODY, TO WEIGH IN ON THE VERY 6727 04:20:50,968 --> 04:20:53,204 DIFFICULT DECISIONS WE HAVE TO 6728 04:20:53,270 --> 04:20:54,605 MAKE, WHICH CLINICAL TRIALS TO 6729 04:20:54,672 --> 04:20:57,041 FUND, WE HAVE SCORES ASSIGNED TO 6730 04:20:57,108 --> 04:20:59,643 ALL OF THEM. 6731 04:20:59,710 --> 04:21:03,147 BASED ON IMPACT, BUDGET IS 6732 04:21:03,214 --> 04:21:05,082 IMPORTANT TOO. 6733 04:21:05,149 --> 04:21:07,184 REALLY, WE HAVE TO FACTOR THAT 6734 04:21:07,251 --> 04:21:07,351 IN. 6735 04:21:07,418 --> 04:21:10,254 WE'RE NOT ASKING YOU TO MAKE THE 6736 04:21:10,321 --> 04:21:12,790 FINAL DECISION BUT IS THAT AN 6737 04:21:12,857 --> 04:21:15,192 ACTIVITY THAT YOU THINK YOU 6738 04:21:15,259 --> 04:21:18,362 COULD CONTRIBUTE PRODUCTIVELY 6739 04:21:18,429 --> 04:21:18,529 TO? 6740 04:21:18,596 --> 04:21:19,897 THE WORKING GROUP ARE PROPOSING 6741 04:21:19,964 --> 04:21:22,033 THAT, DOESN'T MEAN WE HAVE TO DO 6742 04:21:22,099 --> 04:21:22,566 IT. 6743 04:21:22,633 --> 04:21:25,636 WE CAN THINK CREATIVELY ABOUT 6744 04:21:25,703 --> 04:21:27,838 HOW TO IMPLEMENT THAT. 6745 04:21:27,905 --> 04:21:29,907 JANOOS ALREADY ASKED ABOUT THIS 6746 04:21:29,974 --> 04:21:31,342 SO SHE'S BEEN THINKING ABOUT. 6747 04:21:31,409 --> 04:21:35,046 WHAT DO YOU ALL THINK? 6748 04:21:35,112 --> 04:21:38,449 >> FIRST I WANT TO SAY QUICKLY 6749 04:21:38,516 --> 04:21:38,582 -- 6750 04:21:38,649 --> 04:21:41,052 >> OH, ED HAD A HAND UP. 6751 04:21:41,118 --> 04:21:44,355 DID YOU WANT TO WEIGH IN ON THIS 6752 04:21:44,422 --> 04:21:44,555 POINT? 6753 04:21:44,622 --> 04:21:46,190 >> NO, A DIFFERENT POINT. 6754 04:21:46,257 --> 04:21:47,758 IT CAN WAIT. 6755 04:21:47,825 --> 04:21:48,626 >> ALL RIGHT. 6756 04:21:48,692 --> 04:21:50,294 >> THANK YOU FOR SAYING BUDGET 6757 04:21:50,361 --> 04:21:50,694 MATTERS. 6758 04:21:50,761 --> 04:21:52,263 I FEEL LIKE WE DON'T HEAR THAT 6759 04:21:52,329 --> 04:21:52,897 ENOUGH. 6760 04:21:52,963 --> 04:21:54,331 IT'S SOMETHING THAT REALLY DOES 6761 04:21:54,398 --> 04:21:54,565 MATTER. 6762 04:21:54,632 --> 04:21:57,068 THIS MAY SOUND A LITTLE BIT OFF 6763 04:21:57,134 --> 04:22:01,872 TO SAY BUT WHAT'S -- I THINK 6764 04:22:01,939 --> 04:22:02,506 PHYSICIAN-SCIENTISTS, PHYSICIANS 6765 04:22:02,573 --> 04:22:06,343 ARE IN A GOOD POSITION TO 6766 04:22:06,410 --> 04:22:06,577 COMMENT. 6767 04:22:06,644 --> 04:22:12,817 WE HAVE SOME PhD scientists. 6768 04:22:12,883 --> 04:22:14,251 BUT MISSING CAN PEOPLE WITH 6769 04:22:14,318 --> 04:22:14,919 INDUSTRY EXPERIENCE. 6770 04:22:14,985 --> 04:22:16,854 WE HAVE TO DEAL WITH CONFLICT OF 6771 04:22:16,921 --> 04:22:20,257 INTEREST ISSUES BUT OFTEN HAVE 6772 04:22:20,324 --> 04:22:21,225 PEOPLE WHO HAVE INDUSTRY 6773 04:22:21,292 --> 04:22:22,693 EXPERIENCE WHO MIGHT BE WELL 6774 04:22:22,760 --> 04:22:24,095 POSITIONED TO COMMENT ON SOME OF 6775 04:22:24,161 --> 04:22:25,429 THESE THINGS BECAUSE WHERE NIAMS 6776 04:22:25,496 --> 04:22:27,598 AND NIH IN GENERAL CAN BE MOST 6777 04:22:27,665 --> 04:22:29,667 STRATEGIC IS, AGAIN, THOSE 6778 04:22:29,733 --> 04:22:30,768 THINGS THAT INDUSTRY, THEY ARE 6779 04:22:30,835 --> 04:22:33,604 NOT GOING TO PURSUE BUT IT MIGHT 6780 04:22:33,671 --> 04:22:36,540 BE REALLY IMPORTANT TO LOOK AT 6781 04:22:36,607 --> 04:22:37,308 THIS CURRENTLY GENERICALLY 6782 04:22:37,374 --> 04:22:38,843 AVAILABLE DRUG WE WANT TO KEEP 6783 04:22:38,909 --> 04:22:42,246 THEM FROM PATENTING, ET CETERA, 6784 04:22:42,313 --> 04:22:43,247 NICE OPPORTUNITIES ESPECIALLY 6785 04:22:43,314 --> 04:22:43,881 RHEUMATOLOGICAL DISEASES, WE'VE 6786 04:22:43,948 --> 04:22:45,082 SEEN THAT GO WRONG. 6787 04:22:45,149 --> 04:22:46,617 SO I THINK WE MIGHT WANT TO LOOK 6788 04:22:46,684 --> 04:22:48,619 AT SOME PEOPLE WHO HAVE FORMER 6789 04:22:48,686 --> 04:22:50,554 INDUSTRY EXPERIENCE THAT COULD 6790 04:22:50,621 --> 04:22:51,555 BE HELPFUL TO SOME OF THIS 6791 04:22:51,622 --> 04:22:57,695 DECISION MAKING. 6792 04:22:57,761 --> 04:22:59,096 >> OTHER OPINIONS, REACTIONS TO 6793 04:22:59,163 --> 04:23:00,397 THIS POINT? 6794 04:23:00,464 --> 04:23:00,931 GAYLE? 6795 04:23:00,998 --> 04:23:03,901 >> I WAS JUST GOING TO SAY IN 6796 04:23:03,968 --> 04:23:07,938 SOME CASES, YOU KNOW, COUNCIL 6797 04:23:08,005 --> 04:23:09,607 MEMBERS ARE AT MAJOR RESEARCH 6798 04:23:09,673 --> 04:23:09,940 INSTITUTIONS. 6799 04:23:10,007 --> 04:23:12,676 YOU MAY HAVE COLLEAGUES OR 6800 04:23:12,743 --> 04:23:16,147 FRIENDS WHO ARE ACTIVELY 6801 04:23:16,213 --> 04:23:17,081 ENROLLING OR CARRYING OUT 6802 04:23:17,148 --> 04:23:20,317 CLINICAL TRIALS, AND PEOPLE WHO 6803 04:23:20,384 --> 04:23:21,752 ARE EXPERTS IN CLINICAL 6804 04:23:21,819 --> 04:23:23,487 MEDICINE, SO GETTING SOME INPUT 6805 04:23:23,554 --> 04:23:26,557 FROM THEM, BRINGING THAT BACK TO 6806 04:23:26,624 --> 04:23:29,193 THE COUNCIL IS ALSO VERY 6807 04:23:29,260 --> 04:23:29,660 APPROPRIATE. 6808 04:23:29,727 --> 04:23:32,596 I WAS THINKING ABOUT PEOPLE WHO 6809 04:23:32,663 --> 04:23:34,465 WERE AT HARVARD OR BETH ISRAEL 6810 04:23:34,532 --> 04:23:37,935 OR SOME OF THE DIFFERENT 6811 04:23:38,002 --> 04:23:39,036 INSTITUTIONS IN BOSTON THAT 6812 04:23:39,103 --> 04:23:41,739 THERE ARE PEOPLE DOING BRILLIANT 6813 04:23:41,805 --> 04:23:41,972 STUDIES. 6814 04:23:42,039 --> 04:23:45,409 AND FINDING OUT WHAT THE IMPACT 6815 04:23:45,476 --> 04:23:50,548 OF A PARTICULAR APPROACH WOULD 6816 04:23:50,614 --> 04:23:51,549 BE OR PARTICULAR PROPOSAL, 6817 04:23:51,615 --> 04:23:53,083 WITHOUT ACTUALLY SHARING THE 6818 04:23:53,150 --> 04:23:56,353 PROPOSAL ITSELF BUT JUST GETTING 6819 04:23:56,420 --> 04:23:58,989 THE GESTALT FOR WHAT THIS GROUP 6820 04:23:59,056 --> 04:23:59,890 OR INDIVIDUAL MIGHT THING WOULD 6821 04:23:59,957 --> 04:24:02,059 BE IMPORTANT FOR US. 6822 04:24:02,126 --> 04:24:04,461 YOU REPRESENT WITH WHAT YOU 6823 04:24:04,528 --> 04:24:06,230 BRING TO THE TABLE THE ENTIRETY 6824 04:24:06,297 --> 04:24:13,704 OF WHAT YOU'RE EXPOSED TO. 6825 04:24:13,771 --> 04:24:16,340 >> OTHER OPINIONS FROM MEMBERS 6826 04:24:16,407 --> 04:24:17,708 OF COUNCIL WHETHER THIS IS 6827 04:24:17,775 --> 04:24:20,277 SOMETHING THEY THINK WOULD BE A 6828 04:24:20,344 --> 04:24:24,048 GOOD ROLE FOR COUNCIL OR, YOU 6829 04:24:24,114 --> 04:24:28,919 KNOW, IN WHAT -- YOU KNOW, HOW 6830 04:24:28,986 --> 04:24:30,087 BEST -- JANOOS, DID YOU WANT TO 6831 04:24:30,154 --> 04:24:32,856 SPEAK TO THIS OR A SEPARATE 6832 04:24:32,923 --> 04:24:33,057 ISSUE? 6833 04:24:33,123 --> 04:24:37,228 >> I WAS GOING TO SAY THAT I 6834 04:24:37,294 --> 04:24:41,465 THINK IT'S WORTH A PILOT, YOU 6835 04:24:41,532 --> 04:24:43,801 KNOW, WITHOUT MAKING A LONG-TERM 6836 04:24:43,867 --> 04:24:44,101 COMMITMENT. 6837 04:24:44,168 --> 04:24:47,071 I THINK WE NEED TO SORT OF WORK 6838 04:24:47,137 --> 04:24:48,072 OUT THE ISSUES, LIKE EXACTLY 6839 04:24:48,138 --> 04:24:49,807 WHAT THE GOAL IS, EXACTLY WHAT 6840 04:24:49,873 --> 04:24:52,977 SORT OF THE RATING SYSTEM IS 6841 04:24:53,043 --> 04:24:53,377 GOING TO BE. 6842 04:24:53,444 --> 04:24:54,979 AND I IMAGINE THIS IS REALLY 6843 04:24:55,045 --> 04:24:59,350 GOING TO BE SORT OF AN ADVISORY 6844 04:24:59,416 --> 04:25:00,884 ROLE TO HELP NIAMS STAFF MAKE A 6845 04:25:00,951 --> 04:25:02,620 DECISION WITHOUT GETTING TOO 6846 04:25:02,686 --> 04:25:04,488 MUCH INTO THE WEEDS OF THE 6847 04:25:04,555 --> 04:25:04,922 METHOD. 6848 04:25:04,989 --> 04:25:07,224 WHAT WE DON'T WANT IS FOR THIS 6849 04:25:07,291 --> 04:25:10,294 TO TURN INTO ANOTHER STUDY 6850 04:25:10,361 --> 04:25:12,796 SECTION, FOR PEOPLE TO NITPICK. 6851 04:25:12,863 --> 04:25:13,897 >> COMPLETELY AGREE. 6852 04:25:13,964 --> 04:25:15,666 >> ANYWAY, FOR ALL THOSE REASONS 6853 04:25:15,733 --> 04:25:18,836 I THINK I WOULD BE INTERESTED IN 6854 04:25:18,902 --> 04:25:22,206 JUST TRYING IT ONCE, SEEING IF 6855 04:25:22,273 --> 04:25:23,540 IT ACTUALLY HELPS. 6856 04:25:23,607 --> 04:25:26,910 THE ULTIMATE GOING IS TO HELP 6857 04:25:26,977 --> 04:25:28,545 NIAMS MAKE GOOD DECISIONS, SO IF 6858 04:25:28,612 --> 04:25:29,647 IT'S HELPFUL LET'S CONTINUE. 6859 04:25:29,713 --> 04:25:32,249 IF IT'S NOT THAT HELPFUL IT 6860 04:25:32,316 --> 04:25:34,585 WOULD BE FINE TO DITCH IT TOO. 6861 04:25:34,652 --> 04:25:35,653 >> THAT'S GREAT. 6862 04:25:35,719 --> 04:25:36,887 SOUNDS LIKE GREAT ADVICE. 6863 04:25:36,954 --> 04:25:40,291 I SEE A LOT OF HEADS NODDING 6864 04:25:40,357 --> 04:25:41,492 AROUND THE ROOM. 6865 04:25:41,558 --> 04:25:43,427 SO TO BE CONTINUED, OBVIOUSLY. 6866 04:25:43,494 --> 04:25:44,662 ED, DO YOU WANT TO GO NEXT? 6867 04:25:44,728 --> 04:25:47,831 YOUR HAND HAS BEEN UP A WHILE. 6868 04:25:47,898 --> 04:25:48,265 >> SURE. 6869 04:25:48,332 --> 04:25:52,002 SINCE WE HAVE SOME TIME, I JUST 6870 04:25:52,069 --> 04:25:53,704 WANTED TO ECHO A COMMENT, 6871 04:25:53,771 --> 04:25:57,241 FORGIVE ME, I DON'T KNOW WHO IT 6872 04:25:57,308 --> 04:26:01,512 WAS FROM, MADE EARLIER, 6873 04:26:01,578 --> 04:26:03,147 REGARDING MAINTAINING THE 6874 04:26:03,213 --> 04:26:04,615 EMPHASIS ON RARE DISEASE AND 6875 04:26:04,682 --> 04:26:05,916 IMPORTANCE OF RARE DISEASE 6876 04:26:05,983 --> 04:26:06,784 RESEARCH. 6877 04:26:06,850 --> 04:26:09,953 THESE ARE CONDITIONS THAT OFTEN 6878 04:26:10,020 --> 04:26:12,923 LACK SUFFICIENT ATTENTION IN 6879 04:26:12,990 --> 04:26:15,759 FUNDING BUT THEY REALLY HOLD 6880 04:26:15,826 --> 04:26:20,030 KEYS TO UNLOCKING SOME IMPORTANT 6881 04:26:20,097 --> 04:26:20,831 BIOMEDICAL INSIGHT. 6882 04:26:20,898 --> 04:26:24,735 I WANT TO URGE NIAMS TO CONTINUE 6883 04:26:24,802 --> 04:26:26,470 PRIORITIZING AND EXPANDING ITS 6884 04:26:26,537 --> 04:26:29,006 EFFORTS IN RARE DISEASE AS WELL, 6885 04:26:29,073 --> 04:26:31,875 AND JUST TO ENSURE THAT I THINK 6886 04:26:31,942 --> 04:26:35,579 SOME OF THE GREAT STEPS BEING 6887 04:26:35,646 --> 04:26:37,014 TAKEN NOW TO THINK STRATEGICALLY 6888 04:26:37,081 --> 04:26:39,717 ABOUT THE FUTURE AND MAXIMIZE 6889 04:26:39,783 --> 04:26:40,951 IMPACT WITH THE INVESTMENTS THAT 6890 04:26:41,018 --> 04:26:42,820 NIAMS IS MAKING THAT WE REALLY 6891 04:26:42,886 --> 04:26:45,055 LEVERAGE EVERY OPPORTUNITY TO 6892 04:26:45,122 --> 04:26:47,291 MAKE SIGNIFICANT STRIDES FOR 6893 04:26:47,358 --> 04:26:50,027 THOSE THAT ARE AFFECTED BY THOSE 6894 04:26:50,094 --> 04:26:50,327 CONDITIONS. 6895 04:26:50,394 --> 04:26:52,563 >> THANK YOU. 6896 04:26:52,629 --> 04:26:54,732 YOU KNOW, I THINK IT'S 6897 04:26:54,798 --> 04:26:56,233 APPROPRIATE TO SAY OR TRUTHFUL 6898 04:26:56,300 --> 04:26:59,636 TO SAY THAT NIAMS HAS A 6899 04:26:59,703 --> 04:27:00,504 REPUTATION OF BEING SUPPORTIVE 6900 04:27:00,571 --> 04:27:01,705 MUCH RARE DISEASE RESEARCH. 6901 04:27:01,772 --> 04:27:05,109 I'VE HEARD FROM SO MANY PEOPLE, 6902 04:27:05,175 --> 04:27:06,410 I'M CONVINCED OF THAT. 6903 04:27:06,477 --> 04:27:11,014 AND SOME OF YOU MAY HAVE HEARD 6904 04:27:11,081 --> 04:27:13,417 FROM SUSANNA ABOUT THE BESPOKE 6905 04:27:13,484 --> 04:27:14,852 GENE THERAPY CONSORTIUM AND WE 6906 04:27:14,918 --> 04:27:16,086 WERE THRILLED TWO INITIAL 6907 04:27:16,153 --> 04:27:17,621 CLINICAL TRIALS UNDERTAKEN IN 6908 04:27:17,688 --> 04:27:20,023 THAT EFFORT WERE RARE DISEASES 6909 04:27:20,090 --> 04:27:22,426 WITHIN OUR MISSION AREAS. 6910 04:27:22,493 --> 04:27:24,828 I DON'T KNOW IF PETER COX IS 6911 04:27:24,895 --> 04:27:32,136 BEHIND ME BUT WE AND A COUPLE 6912 04:27:32,202 --> 04:27:37,074 OTHERS WERE AT THE SKIN -- I'M 6913 04:27:37,141 --> 04:27:37,775 BLANKING, SOCIETY OF 6914 04:27:37,841 --> 04:27:40,377 DERMATOLOGY, I THOUGHT THE S WAS 6915 04:27:40,444 --> 04:27:41,745 SKIN, SOCIETY FOR INVESTIGATIVE 6916 04:27:41,812 --> 04:27:42,579 DETERMINE NOTHING, AND WE HEARD 6917 04:27:42,646 --> 04:27:43,781 A LOT ABOUT THIS. 6918 04:27:43,847 --> 04:27:46,316 PETER STEPPED UP TO THE TABLE. 6919 04:27:46,383 --> 04:27:49,953 PLEASE FEEL FREE CHIME IN. 6920 04:27:50,020 --> 04:27:52,890 >> GOING BACK TO THE COUNCIL 6921 04:27:52,956 --> 04:27:57,461 ISSUE, FOR ME IN THE PAST, IT'S 6922 04:27:57,528 --> 04:27:59,096 ALWAYS BEEN A FIREWALL BETWEEN 6923 04:27:59,163 --> 04:28:01,732 SCIENTISTS WHO DO REVIEW OF 6924 04:28:01,799 --> 04:28:03,267 GRANT PROPOSALS AND INSTITUTION 6925 04:28:03,333 --> 04:28:04,468 THAT MAKES FINANCIAL DECISIONS. 6926 04:28:04,535 --> 04:28:08,939 SO IT LOOKS TO ME A LITTLE BIT 6927 04:28:09,006 --> 04:28:09,840 WE'RE REMOVING THAT FILE. 6928 04:28:09,907 --> 04:28:11,041 IF THAT'S GOOD FOR THE P.I.s, 6929 04:28:11,108 --> 04:28:11,675 I DON'T KNOW. 6930 04:28:11,742 --> 04:28:13,444 IT WILL NOT BE GOOD FOR YOU 6931 04:28:13,510 --> 04:28:17,714 BECAUSE YOU WILL BE TARGETED AS 6932 04:28:17,781 --> 04:28:20,884 THE ONES THAT INFLUENCE FUNDING 6933 04:28:20,951 --> 04:28:21,985 DECISION, NOT REVIEW. 6934 04:28:22,052 --> 04:28:26,924 I THINK IT'S A POINT AT LEAST TO 6935 04:28:26,990 --> 04:28:27,691 THINK ABOUT. 6936 04:28:27,758 --> 04:28:29,626 >> PETER, THAT'S ACTUALLY NOT 6937 04:28:29,693 --> 04:28:29,960 RIGHT. 6938 04:28:30,027 --> 04:28:31,595 COUNCIL HAS ALWAYS BEEN SECOND 6939 04:28:31,662 --> 04:28:32,930 LEVEL OF REVIEW. 6940 04:28:32,996 --> 04:28:34,898 >> FOR ALL APPLICATIONS. 6941 04:28:34,965 --> 04:28:38,936 >> FOR ALL APPLICATIONS IN 6942 04:28:39,002 --> 04:28:39,169 STATUTE. 6943 04:28:39,236 --> 04:28:41,071 ALL WE'RE DOING IS PUTTING SOME 6944 04:28:41,138 --> 04:28:42,473 MEAT ON THOSE BONES. 6945 04:28:42,539 --> 04:28:44,508 >> I WAS WONDERING WILL THE 6946 04:28:44,575 --> 04:28:46,510 GRANULARITY, HOW MUCH THEY WILL 6947 04:28:46,577 --> 04:28:47,744 BE INVOLVED. 6948 04:28:47,811 --> 04:28:50,881 >> WE ARE WAY OUT ON ONE EXTREME 6949 04:28:50,948 --> 04:28:52,316 ON LIMITATIONS OF INVOLVEMENT OF 6950 04:28:52,382 --> 04:28:54,384 COUNCIL IN SPECIFIC FUNDING 6951 04:28:54,451 --> 04:28:54,852 APPLICATIONS. 6952 04:28:54,918 --> 04:28:56,587 THOSE ARE THE ONCE WE'RE 6953 04:28:56,653 --> 04:29:02,159 STATUTORILY REQUIRED TO BRING TO 6954 04:29:02,226 --> 04:29:03,527 COUNCIL. 6955 04:29:03,594 --> 04:29:05,329 SO, THIS -- YES, SO WE -- THIS 6956 04:29:05,395 --> 04:29:09,833 IS NOT PUTTING COUNCIL AT RISK 6957 04:29:09,900 --> 04:29:11,235 COMPARED TO ANY OTHER COUNCIL 6958 04:29:11,301 --> 04:29:11,468 ANYWAY. 6959 04:29:11,535 --> 04:29:14,838 >> JUST TO CLARIFY THAT POINT, 6960 04:29:14,905 --> 04:29:17,341 SO BECAUSE WE'VE THOUGHT ABOUT 6961 04:29:17,407 --> 04:29:18,775 THIS A LOT, WHAT SHOULD BE 6962 04:29:18,842 --> 04:29:20,310 APPROPRIATE ROLE OF COUNCIL. 6963 04:29:20,377 --> 04:29:24,047 WHEN I CAME ON BOARD I HEARD 6964 04:29:24,114 --> 04:29:25,482 MEMBERS FELT THEY WEREN'T 6965 04:29:25,549 --> 04:29:26,783 ENGAGED, THEY WOULD COME AND 6966 04:29:26,850 --> 04:29:28,318 HEAR THINGS. 6967 04:29:28,385 --> 04:29:31,722 WE'VE BEEN THINKING HOW BEST TO 6968 04:29:31,788 --> 04:29:35,325 PRODUCTIVELY WORK WITH COUNCIL 6969 04:29:35,392 --> 04:29:40,230 WITHOUT OVERBURDENING THEM. 6970 04:29:40,297 --> 04:29:42,533 SOME COUNCILS GO THROUGH EVERY 6971 04:29:42,599 --> 04:29:43,967 APPLICATION, LIKE JINOOS WAS 6972 04:29:44,034 --> 04:29:46,036 SAYING, IN MY MIND KIND OF YOUR 6973 04:29:46,103 --> 04:29:47,104 WORST NIGHTMARE. 6974 04:29:47,170 --> 04:29:48,338 SO YOU HAVE STUDY SECTION. 6975 04:29:48,405 --> 04:29:50,307 AND THEN HAVE YOU NIAMS STAFF. 6976 04:29:50,374 --> 04:29:52,309 THEN IT'S LIKE STARTING ALL OVER 6977 04:29:52,376 --> 04:29:53,043 AGAIN WITH COUNCIL. 6978 04:29:53,110 --> 04:29:57,080 SO WE HAVE BEEN VERY RELUCTANT 6979 04:29:57,147 --> 04:29:58,949 TO FOLLOW THAT MODEL AND 6980 04:29:59,016 --> 04:30:00,918 WE'VE -- WE'RE ON THE OTHER END 6981 04:30:00,984 --> 04:30:03,320 OF THE SPECTRUM BUT WE'RE OPEN 6982 04:30:03,387 --> 04:30:05,422 TO ADOPTING AND ADJUSTING OUR 6983 04:30:05,489 --> 04:30:07,257 PROCEDURES IN WAYS THAT ARE 6984 04:30:07,324 --> 04:30:09,126 MEANINGFUL TO YOU, HELPFUL TO 6985 04:30:09,192 --> 04:30:13,196 THE INSTITUTE, ET CETERA. 6986 04:30:13,263 --> 04:30:14,431 SO -- 6987 04:30:14,498 --> 04:30:16,233 >> I THINK JINOOS HAD IT RIGHT, 6988 04:30:16,300 --> 04:30:17,868 FOR US COUNCIL WAS ADVISORY, 6989 04:30:17,935 --> 04:30:21,271 LOOKED TO YOU FOR ADVICE. 6990 04:30:21,338 --> 04:30:23,674 EVERYTHING WE DO. 6991 04:30:23,740 --> 04:30:26,076 YOUR ADVICE IS SOUGHT, WELCOMED, 6992 04:30:26,143 --> 04:30:27,277 ACTUALLY NEEDED. 6993 04:30:27,344 --> 04:30:28,812 WHAT ONE AREA WE'VE NOT SOUGHT 6994 04:30:28,879 --> 04:30:31,548 IT SO MUCH IS INDIVIDUAL 6995 04:30:31,615 --> 04:30:31,815 DECISIONS. 6996 04:30:31,882 --> 04:30:34,851 BUT I THINK JINOOS EXPECTED THE 6997 04:30:34,918 --> 04:30:36,253 BALANCE QUITE WELL THAT I THINK 6998 04:30:36,320 --> 04:30:39,222 IT'S RIGHT THAT IF A COUNCIL 6999 04:30:39,289 --> 04:30:40,424 SAYS NO, ACTUALLY VOTES 7000 04:30:40,490 --> 04:30:43,260 SOMETHING DOWN, MAJORITY OF THE 7001 04:30:43,327 --> 04:30:44,695 COUNCIL SAYING DON'T FUND IT, AT 7002 04:30:44,761 --> 04:30:46,263 LEAST I'M NOT SURE IF IT'S 7003 04:30:46,330 --> 04:30:51,034 STATUTORY BUT A LOT OF US WILL 7004 04:30:51,101 --> 04:30:54,204 NOT FUND SOMETHING UNDER THOSE 7005 04:30:54,271 --> 04:30:54,504 CONDITIONS. 7006 04:30:54,571 --> 04:30:58,942 I'M NOT SURE IF IT'S BUT LAW 7007 04:30:59,009 --> 04:31:00,911 IT'S ADVISORY, HELPING US MAKE 7008 04:31:00,978 --> 04:31:02,646 BETTER DECISIONS. 7009 04:31:02,713 --> 04:31:09,419 JINOOS HAD THE BALANCE RIGHT. 7010 04:31:09,486 --> 04:31:11,188 >> ED, WE DIDN'T -- WE'RE NOT 7011 04:31:11,254 --> 04:31:12,489 FULLY ADDRESSING YOUR POINT. 7012 04:31:12,556 --> 04:31:13,924 I THOUGHT PETER WAS GOING TO 7013 04:31:13,991 --> 04:31:15,759 TALK ABOUT THAT AND I TALKED 7014 04:31:15,826 --> 04:31:16,660 ABOUT SOMETHING TOTALLY 7015 04:31:16,727 --> 04:31:17,060 DIFFERENT. 7016 04:31:17,127 --> 04:31:21,064 I WAS THINKING ABOUT OUR 7017 04:31:21,131 --> 04:31:24,501 EXCHANGE AT THE SID MEETING. 7018 04:31:24,568 --> 04:31:24,768 >> RARE. 7019 04:31:24,835 --> 04:31:26,169 >> YES, RARE DISEASES AND THAT'S 7020 04:31:26,236 --> 04:31:27,704 EXHIBITED BEAUTIFULLY IN OUR 7021 04:31:27,771 --> 04:31:28,905 INTRAMURAL RESEARCH PROGRAM TOO 7022 04:31:28,972 --> 04:31:31,108 SO WE'RE VERY INTERESTED IN RARE 7023 04:31:31,174 --> 04:31:32,175 DISEASE FOR MANY REASONS, THEY 7024 04:31:32,242 --> 04:31:35,012 CAN TEACH US ABOUT OTHER FORMS 7025 04:31:35,078 --> 04:31:36,246 OF DISEASE. 7026 04:31:36,313 --> 04:31:38,081 GETTING -- CIRCLING BACK TO 7027 04:31:38,148 --> 04:31:39,616 CLINICAL TRIALS PORTFOLIO, I 7028 04:31:39,683 --> 04:31:40,917 THINK JOAN CLARIFIED THIS. 7029 04:31:40,984 --> 04:31:42,252 A BALANCE. 7030 04:31:42,319 --> 04:31:45,956 NOT AT THE EXCLUSION BUT A 7031 04:31:46,023 --> 04:31:46,189 BALANCE. 7032 04:31:46,256 --> 04:31:48,358 >> IT'S TRUE WE'VE REALLY VALUED 7033 04:31:48,425 --> 04:31:53,330 SOME PARTICULAR STUDIES IN RARE 7034 04:31:53,397 --> 04:31:53,597 DISEASES. 7035 04:31:53,664 --> 04:31:53,897 TWO REASONS. 7036 04:31:53,964 --> 04:31:57,534 A LOT OF THOSE ARE MENDELIAN, 7037 04:31:57,601 --> 04:31:59,102 YOU KNOW, MONOGENIC AND YOU CAN 7038 04:31:59,169 --> 04:32:00,537 LEARN ABOUT HUMAN BIOLOGY THAT 7039 04:32:00,604 --> 04:32:03,907 YOU CANNOT LEARN FROM MICE, FROM 7040 04:32:03,974 --> 04:32:05,475 STUDYING MONOGENIC CHANGES IN 7041 04:32:05,542 --> 04:32:05,842 HUMANS. 7042 04:32:05,909 --> 04:32:08,912 THE OTHER IS THAT TREATMENTS 7043 04:32:08,979 --> 04:32:11,748 THAT TARGET VERY SPECIFIC 7044 04:32:11,815 --> 04:32:13,517 PATHWAYS WILL OFTEN WORK IN 7045 04:32:13,583 --> 04:32:17,821 MONOGENIC DISEASES IN WAYS THAT 7046 04:32:17,888 --> 04:32:20,157 ARE ACTUALLY REALLY AMAZING. 7047 04:32:20,223 --> 04:32:24,261 AS SHOWN BY WORK DONE IN RFP, 7048 04:32:24,327 --> 04:32:34,771 INCLUDING JOHN JAY'S WORK, 7049 04:32:36,573 --> 04:32:40,143 JAK/STAT INHIBITORS, 7050 04:32:40,210 --> 04:32:43,880 INTERFERONOPATHIES OR 7051 04:32:43,947 --> 04:32:45,082 PARANOPATHIES, DRUGS THAT TARGET 7052 04:32:45,148 --> 04:32:46,249 SPECIFIC PATHWAYS ARE MIRACLES. 7053 04:32:46,316 --> 04:32:49,052 THE WAY JOHN PUT IT, 10% CHANGE 7054 04:32:49,119 --> 04:32:53,056 IN A POPULATION WITH 7055 04:32:53,123 --> 04:32:54,257 OSTEOARTHRITIS IS ACTUALLY 7056 04:32:54,324 --> 04:32:55,692 REMARKABLE BENEFIT AT THE 7057 04:32:55,759 --> 04:32:57,527 SOCIETY LEVEL BUT 50% CHANGE IN 7058 04:32:57,594 --> 04:33:01,465 A PATIENT WITH A RARE DISEASE 7059 04:33:01,531 --> 04:33:03,233 CAN BE EQUALLY IMPACTFUL. 7060 04:33:03,300 --> 04:33:04,634 IN PART BECAUSE OF EVERYTHING 7061 04:33:04,701 --> 04:33:08,371 ELSE YOU LEARN AS A RESULT OF 7062 04:33:08,438 --> 04:33:11,441 THOSE STUDIES. 7063 04:33:11,508 --> 04:33:13,643 SO I'M OBVIOUSLY NOT A LIFER, 7064 04:33:13,710 --> 04:33:17,347 BUT AS LONG AS I'VE BEEN HERE 7065 04:33:17,414 --> 04:33:20,183 THE INSTITUTE HAS ALWAYS THOUGHT 7066 04:33:20,250 --> 04:33:23,487 THAT UNDERSTANDING AND 7067 04:33:23,553 --> 04:33:25,555 DEVELOPING NEW TREATMENTS FOR 7068 04:33:25,622 --> 04:33:28,291 SOME OF THE HORRIBLE MONOGENICS 7069 04:33:28,358 --> 04:33:29,526 DISEASES IN PARTICULAR IS SOME 7070 04:33:29,593 --> 04:33:40,137 OF THE BEST MONEY WE CAN SPEND. 7071 04:33:40,403 --> 04:33:41,872 >> WITH RESPECT TO THE RARE 7072 04:33:41,938 --> 04:33:44,875 DISEASES, ONE OF THE THINGS THAT 7073 04:33:44,941 --> 04:33:47,577 FASCINATE ME, NOW THAT WE HAVE 7074 04:33:47,644 --> 04:33:50,113 THESE GENOMIC TOOLS AND START TO 7075 04:33:50,180 --> 04:33:51,248 UNDERSTAND COMMON DISEASE 7076 04:33:51,314 --> 04:33:53,150 MECHANISM AND RARE DISEASES MANY 7077 04:33:53,216 --> 04:33:55,252 OF THEM TRIGGER COMMON DISEASE 7078 04:33:55,318 --> 04:34:00,824 PATHWAYS TO A SPECIFIC ORGAN. 7079 04:34:00,891 --> 04:34:05,228 AN EXAMPLE IS GROVER'S DISEASE, 7080 04:34:05,295 --> 04:34:06,963 HAILEY-HAILEY DISEASE, DIFFERENT 7081 04:34:07,030 --> 04:34:08,298 MECHANISMS THAT STARTED BUT 7082 04:34:08,365 --> 04:34:12,836 COMMON DISEASE PATHWAYS, NOW 7083 04:34:12,903 --> 04:34:19,976 BEGINNING TO APPLY CLINICAL 7084 04:34:20,043 --> 04:34:23,613 TRIALS USING MEB KINASE 7085 04:34:23,680 --> 04:34:23,880 INHIBITOR. 7086 04:34:23,947 --> 04:34:24,815 RARE DISEASES, AS BOB SAID, 7087 04:34:24,881 --> 04:34:26,449 SOMEBODY SAID IN THE PAST, THESE 7088 04:34:26,516 --> 04:34:29,052 ARE EXPERIMENTS BY NATURE THAT 7089 04:34:29,119 --> 04:34:32,088 GIVE US INSIGHT INTO BIOLOGY, 7090 04:34:32,155 --> 04:34:33,456 AND BY "WE," WE ARE THE ONES 7091 04:34:33,523 --> 04:34:35,892 THAT CAN WORK ON RARE DISEASES 7092 04:34:35,959 --> 04:34:37,260 BECAUSE WE'RE NOT DRIVEN BY 7093 04:34:37,327 --> 04:34:37,694 FINANCIAL INTERESTS. 7094 04:34:37,761 --> 04:34:39,696 SO I THINK IT'S A GREAT 7095 04:34:39,763 --> 04:34:41,331 SCIENTIFIC OPPORTUNITY, A GREAT 7096 04:34:41,398 --> 04:34:44,301 OPPORTUNITY TO HELP PEOPLE. 7097 04:34:44,367 --> 04:34:46,036 THAT'S WHY I LIKE IT. 7098 04:34:46,102 --> 04:34:48,672 >> NO, NO, THAT WAS GREAT. 7099 04:34:48,738 --> 04:34:53,310 YOU ANSWERED TWO QUESTIONS. 7100 04:34:54,744 --> 04:34:57,647 OTHER MORE COMMENTS ABOUT THIS 7101 04:34:57,714 --> 04:34:59,716 TOPIC, ANYTHING ELSE? 7102 04:34:59,783 --> 04:35:00,717 YES, TEO? 7103 04:35:00,784 --> 04:35:03,119 >> JUST A QUICK FOLLOW-UP. 7104 04:35:03,186 --> 04:35:09,025 I REALLY AGREE WITH JINOOS ABOUT 7105 04:35:09,092 --> 04:35:10,026 THE PILOTING, THE EFFORT. 7106 04:35:10,093 --> 04:35:11,795 IS THERE GOING TO BE A PATIENT 7107 04:35:11,862 --> 04:35:13,763 ADVISORY BOARD REVIEW TO PROVIDE 7108 04:35:13,830 --> 04:35:15,398 INPUT INTO THE IMPACT OF THE 7109 04:35:15,465 --> 04:35:16,500 CLINICAL STUDY? 7110 04:35:16,566 --> 04:35:18,368 BECAUSE I THINK THAT WOULD BE 7111 04:35:18,435 --> 04:35:19,669 CRITICALLY IMPORTANT IN ADDITION 7112 04:35:19,736 --> 04:35:22,973 TO ANY INPUT FROM THIS GROUP. 7113 04:35:23,039 --> 04:35:23,640 >> EXCELLENT POINT. 7114 04:35:23,707 --> 04:35:25,775 I THINK KATHY IS STILL HERE. 7115 04:35:25,842 --> 04:35:28,311 I BELIEVE -- IS THERE A PERSON 7116 04:35:28,378 --> 04:35:31,147 WITH LIVED EXPERIENCE ON OUR 7117 04:35:31,214 --> 04:35:35,752 AMSC AND AMS -- AS ONE PIECE OF 7118 04:35:35,819 --> 04:35:37,821 THAT, BUT THAT COULD ALSO BE A 7119 04:35:37,888 --> 04:35:41,791 ROLE FOR -- WE HAVE PEOPLE WITH 7120 04:35:41,858 --> 04:35:42,525 LIVED EXPERIENCE INTENTIONALLY 7121 04:35:42,592 --> 04:35:44,494 ON COUNCIL, AND THAT COULD BE 7122 04:35:44,561 --> 04:35:51,301 ONE OF THE WAYS THAT PERSPECTIVE 7123 04:35:51,368 --> 04:35:53,837 IS APPLIED. 7124 04:35:53,904 --> 04:35:55,138 EXCELLENT POINT. 7125 04:35:55,205 --> 04:35:57,540 LET'S SEE. 7126 04:35:59,042 --> 04:36:01,511 I'M NOT SEEING OTHER HANDS UP ON 7127 04:36:01,578 --> 04:36:04,381 ZOOM OR IN THE ROOM. 7128 04:36:04,447 --> 04:36:09,085 AND I'M JUST DOUBLE CHECKING. 7129 04:36:09,152 --> 04:36:13,890 YEAH, WE'RE GOING TO -- PARDON? 7130 04:36:13,957 --> 04:36:15,091 BEFORE THE FUN PART? 7131 04:36:15,158 --> 04:36:17,761 DARREN HAS A FEW WORDS AND I GET 7132 04:36:17,827 --> 04:36:19,062 THE FUN PART. 7133 04:36:19,129 --> 04:36:20,697 >> YEAH, I WANTED TO ALSO THANK 7134 04:36:20,764 --> 04:36:22,365 EVERYONE WHO CAME TO THE 7135 04:36:22,432 --> 04:36:24,567 MEETING, PARTICIPATED IN THIS 7136 04:36:24,634 --> 04:36:26,202 OPEN SESSION OF COUNCIL, WHEN 7137 04:36:26,269 --> 04:36:27,637 LINDSEY HITS THE GAVEL THAT WILL 7138 04:36:27,704 --> 04:36:28,838 CONCLUDE THE OPEN SESSION. 7139 04:36:28,905 --> 04:36:31,574 AND WE'LL BEGIN THE CLOSED 7140 04:36:31,641 --> 04:36:31,808 SESSION. 7141 04:36:31,875 --> 04:36:32,776 REMINDER, YOU SHOULD HAVE 7142 04:36:32,842 --> 04:36:35,946 RECEIVED A SEPARATE ZOOM LINK 7143 04:36:36,012 --> 04:36:38,581 FOR THE CLOSED SESSION SO WE'LL 7144 04:36:38,648 --> 04:36:40,216 CLOSE OUT THIS ZOOM LINK. 7145 04:36:40,283 --> 04:36:41,151 THE SESSION OF COUNCIL CLOSED TO 7146 04:36:41,217 --> 04:36:44,054 THE PUBLIC IS IN ACCORDANCE WITH 7147 04:36:44,120 --> 04:36:45,588 PROVISIONS IN FEDERAL ADVISORY 7148 04:36:45,655 --> 04:36:46,990 COMMITTEE ACT FOR REVIEWING 7149 04:36:47,057 --> 04:36:48,658 DISCUSSIONS OF GRANTS AND 7150 04:36:48,725 --> 04:36:49,225 RELATED INFORMATION, COUNCIL 7151 04:36:49,292 --> 04:36:50,860 MEMBERS WILL BE REQUIRED TO 7152 04:36:50,927 --> 04:36:52,128 ABSENT THEMSELVES FROM 7153 04:36:52,195 --> 04:36:53,363 DISCUSSION DURING ANY REVIEW IF 7154 04:36:53,430 --> 04:37:00,770 THEIR PRESENCE CONSTITUTES OR 7155 04:37:00,837 --> 04:37:01,304 APPEARANCE TO CONSTITUTE 7156 04:37:01,371 --> 04:37:02,105 CONFLICT OF INTEREST. 7157 04:37:02,172 --> 04:37:05,308 THAT'S ALL I HAVE TO SAY. 7158 04:37:05,375 --> 04:37:10,080 >> I HAVE A PROCEDURAL QUESTION. 7159 04:37:10,146 --> 04:37:12,182 GAFFE BEFORE CLOSING LANGUAGE. 7160 04:37:12,248 --> 04:37:13,149 >> IT'S SIMULTANEOUS. 7161 04:37:13,216 --> 04:37:14,784 I CLOSE THIS MEETING, BANG. 7162 04:37:14,851 --> 04:37:16,653 >> I'LL DO THIS FIRST. 7163 04:37:16,720 --> 04:37:18,421 ALL RIGHT. 7164 04:37:18,488 --> 04:37:20,490 SO, THANK YOU, EVERYONE. 7165 04:37:20,557 --> 04:37:22,025 SO THIS CONCLUDES THE OPEN 7166 04:37:22,092 --> 04:37:23,326 SESSION OF OUR MEETING. 7167 04:37:23,393 --> 04:37:25,295 WE'LL NOW BEGIN THE CLOSED 7168 04:37:25,362 --> 04:37:27,364 SESSION, AFTER A BREAK. 7169 04:37:27,430 --> 04:37:28,598 AND I WANT TO REMIND EVERYONE 7170 04:37:28,665 --> 04:37:30,133 THIS SESSION OF COUNCIL IS 7171 04:37:30,200 --> 04:37:31,501 CLOSED TO THE PUBLIC IN 7172 04:37:31,568 --> 04:37:32,736 ACCORDANCE WITH PROVISIONS IN 7173 04:37:32,802 --> 04:37:33,937 THE FEDERAL ADVISORY COMMITTEE 7174 04:37:34,004 ACT.