1 00:00:03,896 --> 00:00:06,332 EVERYONE JOINING US FOR THE 2 00:00:06,332 --> 00:00:10,803 COMMITTEE ON LYMPHATIC 3 00:00:10,803 --> 00:00:15,812 INFECTIOUS DISEASES. 4 00:00:15,812 --> 00:00:17,648 THIS IS THE SECOND STAKEHOLDER 5 00:00:17,648 --> 00:00:19,016 ENGAGEMENT MEETING WE HAVE AND 6 00:00:19,016 --> 00:00:22,686 WE ARE WELCOMING ALL OUR GUESTS 7 00:00:22,686 --> 00:00:26,957 WHO ARE HERE IN BETHESDA, 8 00:00:26,957 --> 00:00:27,858 MARYLAND AND ZOOM. 9 00:00:27,858 --> 00:00:28,992 THANK YOU FOR YOUR SUPPORT AND 10 00:00:28,992 --> 00:00:31,695 WE ALSO WELCOME EVERYONE 11 00:00:31,695 --> 00:00:35,365 LISTENING THROUGH THE NIH 12 00:00:35,365 --> 00:00:35,632 VIDEOCAST. 13 00:00:35,632 --> 00:00:40,771 I'M SELEN CATANIA IN THE 14 00:00:40,771 --> 00:00:42,572 DIVISION OF CARDIOVASCULAR 15 00:00:42,572 --> 00:00:42,839 SCIENCES. 16 00:00:42,839 --> 00:00:44,341 THE EXECUTIVE SECRETARY OF THE 17 00:00:44,341 --> 00:00:46,309 COMMISSION SERVING AS A LIAISON 18 00:00:46,309 --> 00:00:48,478 BETWEEN THE NCLB AND THE NIH 19 00:00:48,478 --> 00:00:52,382 LEADERSHIP AND REPRESENTING HERE 20 00:00:52,382 --> 00:00:53,917 A LARGE NHLBI SUPPORT STRUCTURE 21 00:00:53,917 --> 00:00:54,551 FOR THE COMMISSION. 22 00:00:54,551 --> 00:00:56,753 I'M GOING TO MAKE A FEW 23 00:00:56,753 --> 00:00:59,923 ADMINISTRATIVE ANNOUNCEMENTS AND 24 00:00:59,923 --> 00:01:01,525 AND HOUSEKEEPING REMINDERS 25 00:01:01,525 --> 00:01:02,159 BEFORE WE START. 26 00:01:02,159 --> 00:01:04,461 FIRST I WANT TO WELCOME OUR 27 00:01:04,461 --> 00:01:05,262 PUBLIC VISITORS FOR THE OPEN 28 00:01:05,262 --> 00:01:06,196 SESSION. 29 00:01:06,196 --> 00:01:08,432 WE'RE LOOKING FORWARD TO YOUR 30 00:01:08,432 --> 00:01:08,699 FEEDBACK. 31 00:01:08,699 --> 00:01:14,004 LISTENERS ON THE VIDEOCAST 32 00:01:14,004 --> 00:01:16,573 ENVIRONMENT CAN USE THE SEND 33 00:01:16,573 --> 00:01:19,443 FEEDBACK AND YOUR QUESTIONS AND 34 00:01:19,443 --> 00:01:24,081 FEED LAB WILL BE RECORDED AND 35 00:01:24,081 --> 00:01:24,881 TAKEN INTO CONSIDERATION AND THE 36 00:01:24,881 --> 00:01:26,483 MEETING IS BEING WEBCASTED AND 37 00:01:26,483 --> 00:01:27,951 REPORTED AND THE VIDEO ARCHIVED 38 00:01:27,951 --> 00:01:30,020 AND AVAILABLE FOR THE PUBLIC AND 39 00:01:30,020 --> 00:01:32,556 OUR NIH COLLEAGUES FOR AN 40 00:01:32,556 --> 00:01:33,657 INDEFINITE AMOUNT OF TIME. 41 00:01:33,657 --> 00:01:35,892 A BRIEF OVERVIEW OF TODAY'S 42 00:01:35,892 --> 00:01:39,329 AGENDA WE HAVE TWO PANEL 43 00:01:39,329 --> 00:01:40,597 SESSIONS A GROUP OF GOVERNMENT 44 00:01:40,597 --> 00:01:41,765 AGENCIES IN THE MORNING AND A 45 00:01:41,765 --> 00:01:44,768 GROUP OF ORGANIZATIONS IN THE 46 00:01:44,768 --> 00:01:46,536 AFTERNOON. 47 00:01:46,536 --> 00:01:48,171 AS THE COMMISSION CONTINUES TO 48 00:01:48,171 --> 00:01:49,573 BETTER UNDERSTAND AND ADDRESS 49 00:01:49,573 --> 00:01:52,242 LYMPHATIC DISEASES, TODAY'S 50 00:01:52,242 --> 00:01:53,744 PANEL ARE ESSENTIAL FOR THEIR 51 00:01:53,744 --> 00:01:53,977 EFFORTS. 52 00:01:53,977 --> 00:01:57,314 WE THANK ALL OUR PANELS. 53 00:01:57,314 --> 00:01:59,382 DURING LUNCH BREAK WE'LL MAKE 54 00:01:59,382 --> 00:02:00,584 NECESSARY SEATING AND VIRTUAL 55 00:02:00,584 --> 00:02:03,253 ARRANGEMENTS FOR THE AFTERNOON 56 00:02:03,253 --> 00:02:04,755 SESSION AND WE WILL REQUEST 57 00:02:04,755 --> 00:02:09,526 PANEL A PARTICIPANTS TO EXIT THE 58 00:02:09,526 --> 00:02:11,862 MEETING FOR THAT PANEL MEETING 59 00:02:11,862 --> 00:02:12,295 COMMENT. 60 00:02:12,295 --> 00:02:18,535 SO WITH THAT, I WANT TO HAND IT 61 00:02:18,535 --> 00:02:21,037 TO THE CO-CHAIRS STEPHANIE 62 00:02:21,037 --> 00:02:23,073 DREYER AND STANLEY ROCKSON WILL 63 00:02:23,073 --> 00:02:24,241 INTRODUCE THE CHARGE AND 64 00:02:24,241 --> 00:02:26,576 PROGRESS OF THE COMMISSION AND 65 00:02:26,576 --> 00:02:28,779 EACH SESSION WILL HAVE TWO PARTS 66 00:02:28,779 --> 00:02:32,749 THE PRODUCTION AND OPEN PANEL 67 00:02:32,749 --> 00:02:34,351 DISCUSSION. 68 00:02:34,351 --> 00:02:35,886 WE REQUEST EVERYONE IN ZOOM TO 69 00:02:35,886 --> 00:02:37,954 HAVE THEIR CAMERA ON AND USE 70 00:02:37,954 --> 00:02:39,756 HAND RAISE FUNCTION DURING 71 00:02:39,756 --> 00:02:40,056 DISCUSSIONS. 72 00:02:40,056 --> 00:02:41,057 ALSO CHAT COMMUNICATIONS WILL BE 73 00:02:41,057 --> 00:02:43,860 SAVED FOR THE RECORD OF THE 74 00:02:43,860 --> 00:02:44,161 COMMISSION. 75 00:02:44,161 --> 00:02:47,197 WITH THAT, IT IS MY GREAT 76 00:02:47,197 --> 00:02:48,765 PLEASURE TO PASS THE MIKE TO 77 00:02:48,765 --> 00:02:50,634 STANLEY ROCKSON ONE OF THE 78 00:02:50,634 --> 00:02:52,536 CO-CHAIRS FOR WELCOMING REMARKS. 79 00:02:52,536 --> 00:02:58,642 >> THANK YOU, SELEN. 80 00:02:58,642 --> 00:03:00,443 >> I'D LIKE TO BEGIN BY 81 00:03:00,443 --> 00:03:02,179 DISCUSSING THE CHARGE OF THE 82 00:03:02,179 --> 00:03:02,479 COMMISSION. 83 00:03:02,479 --> 00:03:06,283 THIS IS A TRANSPARENT AND 84 00:03:06,283 --> 00:03:08,485 INCLUSIVE, ACCESSIBLE PUBLIC 85 00:03:08,485 --> 00:03:10,187 FORUM AND ADDRESS CRITICAL 86 00:03:10,187 --> 00:03:12,522 CHALLENGES IN SCIENTIFIC AND 87 00:03:12,522 --> 00:03:13,990 CLINICAL OPPORTUNITIES INCLUDING 88 00:03:13,990 --> 00:03:14,724 FUNDAMENTAL KNOWLEDGE, 89 00:03:14,724 --> 00:03:16,193 IMPLEMENTATION GAPS AND 90 00:03:16,193 --> 00:03:17,194 DISPARITIES TO UNDERSTAND AND 91 00:03:17,194 --> 00:03:19,229 ADDRESS THE INDIVIDUAL AND 92 00:03:19,229 --> 00:03:20,430 COLLECTIVE BURDENS OF LYMPHATIC 93 00:03:20,430 --> 00:03:20,764 DISEASES. 94 00:03:20,764 --> 00:03:23,700 WE'LL BE GATHERING INPUT FROM A 95 00:03:23,700 --> 00:03:25,068 WIDE AND DIVERSE SPECTRUM OF 96 00:03:25,068 --> 00:03:26,970 STAKEHOLDERS TO IDENTIFY THE 97 00:03:26,970 --> 00:03:29,773 REMAINING GAPS AND CHALLENGES. 98 00:03:29,773 --> 00:03:31,808 WE ARE GOING TO PROVIDE 99 00:03:31,808 --> 00:03:34,578 ACTIONABLE PROGRESS UPDATES AND 100 00:03:34,578 --> 00:03:39,349 THE FINAL REPORT TO THE NHLBI 101 00:03:39,349 --> 00:03:42,018 ADVISORY COUNCIL TO REFLECT 102 00:03:42,018 --> 00:03:44,788 CHALLENGES AND BURDENS AND GAPS 103 00:03:44,788 --> 00:03:47,424 AND OPPORTUNITIES IN LYMPHATIC 104 00:03:47,424 --> 00:03:50,727 SCIENCE AND CLINICAL SCIENCE AND 105 00:03:50,727 --> 00:03:52,395 EDUCATION SHORTFALLS THAT NEED 106 00:03:52,395 --> 00:03:53,230 TO BE REMEDIED. 107 00:03:53,230 --> 00:03:57,334 BY WAY OF INTRODUCTION, OUR 108 00:03:57,334 --> 00:03:59,603 COMMISSION WORKS AS A WHOLE BUT 109 00:03:59,603 --> 00:04:01,872 HAS DIVIDED ITSELF INTO A 110 00:04:01,872 --> 00:04:03,540 VARIETY OF SUBCOMMITTEES AND 111 00:04:03,540 --> 00:04:05,909 MANY OF THE COMMISSIONERS SERVE 112 00:04:05,909 --> 00:04:07,611 ON MULTIPLE OF THESE COMMITTEES. 113 00:04:07,611 --> 00:04:10,480 YOU CAN SEE WE HAVE THOSE 114 00:04:10,480 --> 00:04:11,882 DEVOTED TO SCIENTIFIC 115 00:04:11,882 --> 00:04:14,851 ADVANCEMENT, EDUCATIONAL 116 00:04:14,851 --> 00:04:17,187 IMPERATIVES, MEASURABLE RESULTS, 117 00:04:17,187 --> 00:04:19,222 POTENTIAL TOOLS AND THIRD PARTY 118 00:04:19,222 --> 00:04:20,090 COVERAGE AND COMMUNITY GROWTH 119 00:04:20,090 --> 00:04:20,824 AND SEE THE CHAIR OF EACH 120 00:04:20,824 --> 00:04:24,728 COMMITTEE HIGHLIGHTED. 121 00:04:24,728 --> 00:04:27,330 AND AGAIN MULTIPLE ASSIGNMENTS 122 00:04:27,330 --> 00:04:33,403 AMONG THE COMMISSIONERS. 123 00:04:33,403 --> 00:04:35,472 AT INTRODUCTION WE'LL PROCEED TO 124 00:04:35,472 --> 00:04:37,841 PANEL A ADDRESSING THE GAPS AND 125 00:04:37,841 --> 00:04:38,875 BARRIERS IN THE FIELD OF 126 00:04:38,875 --> 00:04:41,111 LYMPHATIC DISEASES AND LYMPHATIC 127 00:04:41,111 --> 00:04:41,578 RESEARCH. 128 00:04:41,578 --> 00:04:46,549 I'M GOING TO BEGIN BY 129 00:04:46,549 --> 00:04:48,318 INTRODUCING OUR FIRST 130 00:04:48,318 --> 00:04:51,354 STAKEHOLDER, DR. CECELIA 131 00:04:51,354 --> 00:04:55,992 DUPECHER MEDICAL RESEARCH 132 00:04:55,992 --> 00:04:56,526 PROGRAM, CONGRESSIONALLY 133 00:04:56,526 --> 00:04:57,627 DIRECTED U.S. ARMY MEDICAL 134 00:04:57,627 --> 00:04:59,796 RESEARCH AND DEVELOPMENT 135 00:04:59,796 --> 00:05:01,364 COMMAND, DEPARTMENT OF DEFENSE 136 00:05:01,364 --> 00:05:07,437 TO MAKE INTRODUCTORY COMMENTS. 137 00:05:07,437 --> 00:05:08,271 S 138 00:05:08,271 --> 00:05:16,546 >> IT'S ALL YOURS. 139 00:05:16,546 --> 00:05:17,781 >> CAN EVERYONE HEAR ME? 140 00:05:17,781 --> 00:05:18,982 IT'S A PLEASURE TO BE HERE THIS 141 00:05:18,982 --> 00:05:19,215 MORNING. 142 00:05:19,215 --> 00:05:20,750 I'M EXCITED TO TALK ABOUT OUR 143 00:05:20,750 --> 00:05:22,852 ORGANIZATION AND TO BE PART OF 144 00:05:22,852 --> 00:05:23,820 THIS PANEL. 145 00:05:23,820 --> 00:05:25,322 I HAVEN'T GOTTEN AN ANSWER ON 146 00:05:25,322 --> 00:05:25,755 THE CHAT. 147 00:05:25,755 --> 00:05:27,324 ARE YOU GOING TO BE SHARING THE 148 00:05:27,324 --> 00:05:28,725 SLIDES OR ARE THE PRESENTERS 149 00:05:28,725 --> 00:05:30,393 GOING TO BE PRESENTING THE 150 00:05:30,393 --> 00:05:30,627 SLIDES? 151 00:05:30,627 --> 00:05:32,796 >> WE'RE SHARING THE SLIDES FOR 152 00:05:32,796 --> 00:05:36,132 YOU. 153 00:05:36,132 --> 00:05:38,635 ARE YOU SEEING THE ZOOM 154 00:05:38,635 --> 00:05:39,336 >> PERFECT. 155 00:05:39,336 --> 00:05:49,679 SHALL I JUST HOP IN? 156 00:05:50,747 --> 00:05:53,516 I'M CECELIA DUPECHER ONE OF 35 157 00:05:53,516 --> 00:05:54,551 ORGANIZATIONS CALLED 158 00:05:54,551 --> 00:05:56,753 CONGRESSIONALLY DIRECTED MEDICAL 159 00:05:56,753 --> 00:06:07,063 RESEARCH PROGRAMS. 160 00:06:09,666 --> 00:06:11,134 I'LL GIVE AN OVERVIEW OF THE 161 00:06:11,134 --> 00:06:12,769 ORGANIZATION AND GO OVER THE 162 00:06:12,769 --> 00:06:15,171 PROGRAM CYCLE AND REVIEW PROCESS 163 00:06:15,171 --> 00:06:17,974 AND THEN HOP IN THE PROGRAM THAT 164 00:06:17,974 --> 00:06:20,410 HAS LYMPHATIC DISEASE AND 165 00:06:20,410 --> 00:06:22,579 LYMPHEDEMA AS A DIRECTED TOPIC 166 00:06:22,579 --> 00:06:23,513 AREAS FOR RESEARCH. 167 00:06:23,513 --> 00:06:24,180 THERE'S A LOT OF INFORMATION ON 168 00:06:24,180 --> 00:06:25,048 THE SLIDES. 169 00:06:25,048 --> 00:06:26,950 IN THE INTEREST OF TIME I HEARD 170 00:06:26,950 --> 00:06:28,318 WE'RE RUNNING LATE SO I'LL TRY 171 00:06:28,318 --> 00:06:29,986 TO BE AS BRIEF AS I CAN. 172 00:06:29,986 --> 00:06:31,488 IF YOU HAVE QUESTIONS FEEL FREE 173 00:06:31,488 --> 00:06:34,958 TO REACH OUT AND I'M SURE WE CAN 174 00:06:34,958 --> 00:06:36,760 DISSEMINATE THE SLIDES AFTER 175 00:06:36,760 --> 00:06:46,970 THIS BRIEF. 176 00:06:48,138 --> 00:06:58,348 WE STARTED IN 1992 WITH 177 00:06:58,348 --> 00:06:58,948 GRASSROOTS ADVOCACY AND THE 178 00:06:58,948 --> 00:07:00,250 APPROPRIATION WAS MANAGED BY THE 179 00:07:00,250 --> 00:07:03,353 U.S. ARMY AT THE TIME AND HOW 180 00:07:03,353 --> 00:07:04,687 THE FIRST PROGRAM OF THE 181 00:07:04,687 --> 00:07:06,256 ORGANIZATION STOOD UP THE BREAST 182 00:07:06,256 --> 00:07:08,158 CANCER RESEARCH PROGRAM IN 1992. 183 00:07:08,158 --> 00:07:11,061 AND WE HAVE STEADILY GROWN SINCE 184 00:07:11,061 --> 00:07:12,762 THEN WITH FURTHER APPROPRIATIONS 185 00:07:12,762 --> 00:07:14,064 FROM CONGRESS. 186 00:07:14,064 --> 00:07:16,766 WE FUNDED IMPACTFUL RESEARCH WE 187 00:07:16,766 --> 00:07:19,069 LIKE TO SAY RISKY RESEARCH THAT 188 00:07:19,069 --> 00:07:20,170 OTHER ORGANIZATIONS MAY NOT 189 00:07:20,170 --> 00:07:20,470 FUND. 190 00:07:20,470 --> 00:07:22,939 WE CAN FUND ANYWHERE IN THE 191 00:07:22,939 --> 00:07:24,774 WORLD SO WE'RE NOT JUST LIMITED 192 00:07:24,774 --> 00:07:34,350 TO THE UNITED STATES. 193 00:07:34,350 --> 00:07:38,154 AND AWAY USE OUR TIER 2 REVIEW 194 00:07:38,154 --> 00:07:38,421 PROPOSAL. 195 00:07:38,421 --> 00:07:39,823 THIS IS THE HALLMARKS OF THE 196 00:07:39,823 --> 00:07:43,093 ORGANIZATION IN BROAD STROKES I 197 00:07:43,093 --> 00:07:47,163 WANT TO SHOW UNDER THE HEADER OF 198 00:07:47,163 --> 00:07:47,430 IMPACT. 199 00:07:47,430 --> 00:07:51,201 WE DO NOT REQUEST THE FUNDS. 200 00:07:51,201 --> 00:07:52,969 THEY'RE ADDED THROUGH THE 201 00:07:52,969 --> 00:07:53,570 DEFENSE APPROPRIATION BILL. 202 00:07:53,570 --> 00:07:55,205 WE PUBLICALLY ANNOUNCE AND 203 00:07:55,205 --> 00:07:56,773 COMPETE OUR FUNDING 204 00:07:56,773 --> 00:07:59,309 OPPORTUNITIES AND FOLLOW THIS 205 00:07:59,309 --> 00:08:01,511 NATIONAL ACADEMY OF MEDICINE 206 00:08:01,511 --> 00:08:03,413 RECOMMENDS TO TIER 2 REVIEW 207 00:08:03,413 --> 00:08:10,720 PROFESSION WE'LL DISCUSS LATER. 208 00:08:12,522 --> 00:08:15,959 WE STAND ON THE FOUNDATIONS OF 209 00:08:15,959 --> 00:08:18,328 GRASSROOTS ADVOCACY SO THE 210 00:08:18,328 --> 00:08:20,597 CONSUMERS WHICH ARE PATIENTS 211 00:08:20,597 --> 00:08:23,099 LIVING ONE THE DISEASE ARE THE 212 00:08:23,099 --> 00:08:24,501 TRUE NORTH OF THE ORGANIZATION 213 00:08:24,501 --> 00:08:26,169 AND WILL HAVE AN EQUAL VOTE AS 214 00:08:26,169 --> 00:08:28,271 SCIENTIST REVIEWERS DURING OUR 215 00:08:28,271 --> 00:08:31,174 PREREVIEW AND PROGRAMATIC 216 00:08:31,174 --> 00:08:31,407 REVIEW. 217 00:08:31,407 --> 00:08:33,343 AND IN TERMS OF ADMINISTRATIVE 218 00:08:33,343 --> 00:08:35,512 HOW WE OBLIGATE FUNDS WE RECEIVE 219 00:08:35,512 --> 00:08:37,514 OUR APPROPRIATIONS ANNUALLY 220 00:08:37,514 --> 00:08:38,448 THERE ARE WE OBLIGATE OUR FUNDS 221 00:08:38,448 --> 00:08:39,082 UP FRONT. 222 00:08:39,082 --> 00:08:44,754 WE DON'T HAVE LIMITED OUT YEAR 223 00:08:44,754 --> 00:08:46,389 BUDGET COMMITMENTS. 224 00:08:46,389 --> 00:08:49,859 THESE ARE THE 35 PROGRAMS YOU 225 00:08:49,859 --> 00:08:51,327 SEE LISTED FOR ORGANIZATION. 226 00:08:51,327 --> 00:08:52,428 FOR FY24. 227 00:08:52,428 --> 00:08:54,964 ON THE RIGHT YOU'LL SEE THE 228 00:08:54,964 --> 00:08:55,565 RESPECTIVE APPROPRIATION FOR 229 00:08:55,565 --> 00:08:56,232 EACH ONE OF THE PROGRAMS. 230 00:08:56,232 --> 00:08:58,635 YOU CAN SEE WE HAVE PROGRAMS 231 00:08:58,635 --> 00:09:02,972 MUCH SMALLER IN SIZE IN TERMS OF 232 00:09:02,972 --> 00:09:04,674 MILLIONS AND LARGER PROGRAMS. 233 00:09:04,674 --> 00:09:12,749 THERE'S LISTED IN ALPHABETICAL 234 00:09:12,749 --> 00:09:18,488 ORDER WE HAVE RARE CANCERS AND 235 00:09:18,488 --> 00:09:20,156 TRAUMATIC VISION AND THERE'S A 236 00:09:20,156 --> 00:09:21,558 WIDE RANGE OF PROGRAMS HERE. 237 00:09:21,558 --> 00:09:23,960 TODAY I'LL TALK ABOUT THE PEER 238 00:09:23,960 --> 00:09:25,128 REVIEWED MEDICAL RESEARCH 239 00:09:25,128 --> 00:09:25,929 PROGRAM. 240 00:09:25,929 --> 00:09:27,630 IT'S HERE ON THE RIGHT SIDE. 241 00:09:27,630 --> 00:09:30,233 YOU CAN SEE IT HAS 42 TOPIC 242 00:09:30,233 --> 00:09:30,433 AREAS. 243 00:09:30,433 --> 00:09:31,134 I'LL TELL YOU A LITTLE BIT HOW 244 00:09:31,134 --> 00:09:33,736 THE TOPIC AREAS WORK. 245 00:09:33,736 --> 00:09:36,806 WE HAVE BEEN AROUND FOR QUITE A 246 00:09:36,806 --> 00:09:38,474 WHILE AND OUR ANNUAL 247 00:09:38,474 --> 00:09:44,414 APPROPRIATION IS $370 MILLION. 248 00:09:44,414 --> 00:09:46,082 SO NOW GOING TO OUR PROGRAM 249 00:09:46,082 --> 00:09:47,317 CYCLE AND REVIEW PROCESS. 250 00:09:47,317 --> 00:09:50,353 LIKE I SAID, WE'RE APPROPRIATED 251 00:09:50,353 --> 00:09:52,689 YEARLY SO OUR FUNDING 252 00:09:52,689 --> 00:09:53,756 OPPORTUNITIES CAN ONLY BE 253 00:09:53,756 --> 00:09:54,490 RELEASED AFTER THE APPROPRIATION 254 00:09:54,490 --> 00:09:56,859 BILL IS SIGNED INTO LAW. 255 00:09:56,859 --> 00:09:58,394 SO WHEN WE ARE IN CONTINUING 256 00:09:58,394 --> 00:10:00,063 RESOLUTION WHICH IS NOW IT'S 257 00:10:00,063 --> 00:10:04,567 ABOUT TO HAPPEN IT DOES COMPRESS 258 00:10:04,567 --> 00:10:06,269 OUR TIME LINES. 259 00:10:06,269 --> 00:10:08,371 WE GO THROUGH DEPENDING ON THE 260 00:10:08,371 --> 00:10:09,339 AWARD MECHANISM EACH PROGRAM IS 261 00:10:09,339 --> 00:10:10,873 A STAND ALONE PROGRAM. 262 00:10:10,873 --> 00:10:15,345 WE CAN EACH INDIVIDUALLY RELEASE 263 00:10:15,345 --> 00:10:16,579 OUR FUNDING OPPORTUNITY AND NOT 264 00:10:16,579 --> 00:10:18,114 ONE TO THE OVER ALL ORGANIZATION 265 00:10:18,114 --> 00:10:19,482 IT'S FOR EACH OF THE INDIVIDUAL 266 00:10:19,482 --> 00:10:19,749 PROGRAMS. 267 00:10:19,749 --> 00:10:25,021 WE'LL GO THROUGH A 268 00:10:25,021 --> 00:10:26,155 PRE-APPLICATION SCREENING 269 00:10:26,155 --> 00:10:27,790 PROCESS AND PEER-REVIEW MANAGED 270 00:10:27,790 --> 00:10:29,692 BY A CONTRACT WITH GENERAL 271 00:10:29,692 --> 00:10:32,595 DYNAMICS AND GO TO PROGRAMATIC 272 00:10:32,595 --> 00:10:32,829 REVIEW. 273 00:10:32,829 --> 00:10:35,164 WE DON'T HAVE A CENTER FOR 274 00:10:35,164 --> 00:10:35,932 SCIENTIFIC REVIEW. 275 00:10:35,932 --> 00:10:37,667 OUR STANDING PANEL ARE BASED ON 276 00:10:37,667 --> 00:10:38,635 THE PROPOSALS WE RECEIVE. 277 00:10:38,635 --> 00:10:40,770 ONE OF THE THINGS I'D LIKE TO 278 00:10:40,770 --> 00:10:42,171 CALL YOUR ATTENTION HERE YOU'LL 279 00:10:42,171 --> 00:10:44,173 SEE ON THE LEFT PROGRAMMATIC 280 00:10:44,173 --> 00:10:45,275 PANEL IN BROWN. 281 00:10:45,275 --> 00:10:49,679 THIS IS A BOARD OF ADVISORS PART 282 00:10:49,679 --> 00:10:52,649 OF EACH ONE OF THE PROGRAMS. 283 00:10:52,649 --> 00:10:54,751 THEY'LL HAVE THAT AND IT IS 284 00:10:54,751 --> 00:10:56,386 REPRESENTED BY GOVERNMENT 285 00:10:56,386 --> 00:11:00,456 EMPLOYEES, OTHER STAKEHOLDERS, 286 00:11:00,456 --> 00:11:01,924 CONSUMERS AND A VARIETY OF 287 00:11:01,924 --> 00:11:02,859 EXPERTISE NEEDED. 288 00:11:02,859 --> 00:11:07,096 AND THEY WILL HAVE INPUT 289 00:11:07,096 --> 00:11:08,765 THROUGHOUT THE ENTIRETY OF THE 290 00:11:08,765 --> 00:11:09,465 PROGRAM CYCLE. 291 00:11:09,465 --> 00:11:12,201 AFTER WE SELECT PROPOSALS. 292 00:11:12,201 --> 00:11:15,038 THERE'S GOING TO BE A 293 00:11:15,038 --> 00:11:15,938 RECOMMENDED FUNDING LIST AND THE 294 00:11:15,938 --> 00:11:17,140 DECISION AUTHORITY AND THEN 295 00:11:17,140 --> 00:11:22,078 WE'LL ENTER TO THE NEGOTIATIONS. 296 00:11:22,078 --> 00:11:25,315 SO THIS IS THE TWO-TIER REVIEW 297 00:11:25,315 --> 00:11:25,882 PROCESS. 298 00:11:25,882 --> 00:11:27,650 LIKE I SAID WE HAVE PEER-REVIEW 299 00:11:27,650 --> 00:11:29,952 AND GO ONE STEP FURTHER WITH THE 300 00:11:29,952 --> 00:11:31,621 PROGRAMMATIC REVIEW. 301 00:11:31,621 --> 00:11:33,723 SIMILAR TO WITH COUNCIL AT THE 302 00:11:33,723 --> 00:11:35,124 NIH BUT DO NOT HAVE A FUNDING 303 00:11:35,124 --> 00:11:37,894 LINE. 304 00:11:37,894 --> 00:11:39,962 WE START WITH THE PEER REVIEW 305 00:11:39,962 --> 00:11:44,767 AND THE MERIT OF PROPOSAL AND 306 00:11:44,767 --> 00:11:46,235 THE SUMMARY STATEMENT, A 307 00:11:46,235 --> 00:11:50,239 DOCUMENTATION OF STRENGTHS AND 308 00:11:50,239 --> 00:11:55,244 WEAKNESSES AND THEIR PROGRAMATIC 309 00:11:55,244 --> 00:11:57,347 PANEL CAN LOOK INTO HOW WELL IT 310 00:11:57,347 --> 00:11:59,582 ADDRESSES THE INTENT OF THE 311 00:11:59,582 --> 00:12:00,783 AWARD MECHANISM AND POTENTIAL 312 00:12:00,783 --> 00:12:02,552 FOR IMPACT AND OF THOSE 313 00:12:02,552 --> 00:12:02,819 SELECTED. 314 00:12:02,819 --> 00:12:04,454 WE'LL COME OUT WITH A 315 00:12:04,454 --> 00:12:05,555 RECOMMENDED FOR FUNDING LIST. 316 00:12:05,555 --> 00:12:08,758 SO WE DO NOT HAVE A FUNDING 317 00:12:08,758 --> 00:12:18,201 LINE. 318 00:12:18,201 --> 00:12:20,169 LIKE I SAID THE SIDE SUMMARIZES 319 00:12:20,169 --> 00:12:22,105 THE CONSUMER INVOLVE MANY. 320 00:12:22,105 --> 00:12:23,539 THEY'RE INVOLVED IN EVERY STEP 321 00:12:23,539 --> 00:12:25,942 OF THE WAY AND WE HAVE CONSUMERS 322 00:12:25,942 --> 00:12:28,778 THAT ARE FOR EVERY PROGRAMATIC 323 00:12:28,778 --> 00:12:30,113 PANEL AND PEER REVIEW PANEL 324 00:12:30,113 --> 00:12:31,814 WE'LL HAVE CONSUMERS BASICALLY 325 00:12:31,814 --> 00:12:35,651 LOOKING AT THE IMPACT THAT EACH 326 00:12:35,651 --> 00:12:36,719 PROPOSAL WILL HAVE ON THEIR 327 00:12:36,719 --> 00:12:37,253 COMMUNITY. 328 00:12:37,253 --> 00:12:39,322 THEIR VOTE IS AN EQUAL VOTE AS A 329 00:12:39,322 --> 00:12:44,761 SCIENTIST REVIEWER. 330 00:12:44,761 --> 00:12:47,063 NOW WE HAVE 35 PROGRAMS. 331 00:12:47,063 --> 00:12:48,598 WE'LL FOCUS ON THE PEER REVIEWED 332 00:12:48,598 --> 00:12:49,432 MEDICAL RESEARCH PROGRAM. 333 00:12:49,432 --> 00:12:51,334 THIS IS WHAT I MANAGE. 334 00:12:51,334 --> 00:12:52,969 THE LARGEST PROGRAM IN THE 335 00:12:52,969 --> 00:12:56,305 ORGANIZATION AND THAT HAS TOPIC 336 00:12:56,305 --> 00:12:56,939 AREAS RELATED TO WHAT WE'RE 337 00:12:56,939 --> 00:12:59,375 DISCUSSING HERE TODAY. 338 00:12:59,375 --> 00:13:03,780 SO THIS PROGRAM STARTED IN 1999 339 00:13:03,780 --> 00:13:06,382 WITH A CHARGE TO ADDRESS 340 00:13:06,382 --> 00:13:08,217 DISEASES AND CONDITIONS WITH 341 00:13:08,217 --> 00:13:09,118 RELEVANCE TO MILITARY HEALTH. 342 00:13:09,118 --> 00:13:10,620 PART OF OUR CONGRESSIONAL 343 00:13:10,620 --> 00:13:12,422 LANGUAGE FOR US TO SUPPORT 344 00:13:12,422 --> 00:13:13,589 RESEARCH OF CLEAR SCIENTIFIC 345 00:13:13,589 --> 00:13:16,526 MERIT AND THAT'S EMBEDDED IN THE 346 00:13:16,526 --> 00:13:17,994 CONGRESSIONAL LANGUAGE EACH YEAR 347 00:13:17,994 --> 00:13:19,896 AND RELEVANCE TO MILITARY HEALTH 348 00:13:19,896 --> 00:13:22,165 IN SPECIFIED TOPIC AREAS. 349 00:13:22,165 --> 00:13:24,367 UNLIKE SOME PROGRAMS YOU SAW IN 350 00:13:24,367 --> 00:13:27,336 THE LIST THAT WOULD HAVE A 351 00:13:27,336 --> 00:13:31,808 PRESCRIPTIVE LANGUAGE AND 352 00:13:31,808 --> 00:13:33,509 DIRECTIVE, CDMRP OPERATES IN THE 353 00:13:33,509 --> 00:13:44,020 PREMISE OF THESE TOPIC AREAS. 354 00:13:44,687 --> 00:13:45,788 WE RECEIVE FUNDING APPROPRIATION 355 00:13:45,788 --> 00:13:47,490 AND THE TOPIC AREAS END UP IN 356 00:13:47,490 --> 00:13:48,524 THE PROGRAM. 357 00:13:48,524 --> 00:13:51,594 IT'S A REFLECTION OF LOBBYING 358 00:13:51,594 --> 00:13:52,562 EFFORTS, GRASSROOTS, 359 00:13:52,562 --> 00:13:59,569 PROFESSIONAL LOBBYISTS BUT 360 00:13:59,569 --> 00:14:00,603 ULTIMATELY CONGRESS'S DECISION. 361 00:14:00,603 --> 00:14:02,338 WE HAVE LONG STANDING TOPIC 362 00:14:02,338 --> 00:14:05,007 AREAS IN THE PROGRAM AND HAVE 363 00:14:05,007 --> 00:14:07,243 TOPIC AREAS THAT VARY EACH YEAR. 364 00:14:07,243 --> 00:14:11,280 I'M LISTING THOSE FOR FY24 AND 365 00:14:11,280 --> 00:14:12,482 IN BLUE HAVE NEVER BEEN 366 00:14:12,482 --> 00:14:12,748 ASSIGNED. 367 00:14:12,748 --> 00:14:15,017 THE MAJORITY OF THE TOPIC AREAS 368 00:14:15,017 --> 00:14:18,855 HAVE BEEN LONG STANDING WITH THE 369 00:14:18,855 --> 00:14:19,088 PROGRAM. 370 00:14:19,088 --> 00:14:25,328 IN FY24 WE HAD LYMPHEDEMA AND 371 00:14:25,328 --> 00:14:25,795 LYMPHATIC DISEASES. 372 00:14:25,795 --> 00:14:27,430 THIS IS THE ONE I'M GOING TO 373 00:14:27,430 --> 00:14:31,167 SHOW THE PROPOSALS WE ENDED UP 374 00:14:31,167 --> 00:14:31,534 FUNDING. 375 00:14:31,534 --> 00:14:36,873 LYMPHATIC DISEASES ENDED FALLING 376 00:14:36,873 --> 00:14:40,610 OFF CONGRESSIONAL LANGUAGE AND 377 00:14:40,610 --> 00:14:44,747 STAYED ONLY WITH LYMPHEDEMA. 378 00:14:44,747 --> 00:14:47,283 AND WE WILL ALLOCATE THEM IN THE 379 00:14:47,283 --> 00:14:49,185 PORTFOLIOS YOU SEE THEY ALIGN 380 00:14:49,185 --> 00:14:51,354 WITH THE MAJOR AREAS OF 381 00:14:51,354 --> 00:14:52,755 SCIENTIFIC RESEARCH. 382 00:14:52,755 --> 00:14:56,592 HOW WE DO THAT WE DISCUSS WITH 383 00:14:56,592 --> 00:14:57,927 THE PROGRAMATIC PANEL AND THE 384 00:14:57,927 --> 00:14:59,128 PORTFOLIO DRIVEN APPROACH ALLOWS 385 00:14:59,128 --> 00:15:00,429 US TO TAKE A MORE TARGETED 386 00:15:00,429 --> 00:15:03,132 APPROACH TO FUNDING. 387 00:15:03,132 --> 00:15:05,668 WE CAN LOOK AT THE GAPS IN EACH 388 00:15:05,668 --> 00:15:07,236 ONE OF THESE AND PROVIDES A 389 00:15:07,236 --> 00:15:09,238 LITTLE BIT MORE CONTINUITY FOR 390 00:15:09,238 --> 00:15:11,440 TOPIC AREAS THAT FALL OFF MAKING 391 00:15:11,440 --> 00:15:15,077 SURE WE HAVE BROAD GOALS FOR 392 00:15:15,077 --> 00:15:15,278 EACH. 393 00:15:15,278 --> 00:15:24,287 LIMB FA -- LYMPHEDEMA AND 394 00:15:24,287 --> 00:15:27,056 LYMPHATIC DISEASES WERE IN THE 395 00:15:27,056 --> 00:15:27,323 PORTFOLIO. 396 00:15:27,323 --> 00:15:32,261 WE DEVISE THESE WITH OUR 397 00:15:32,261 --> 00:15:34,363 PROGRAMATIC PANEL AND REACH OUT 398 00:15:34,363 --> 00:15:36,666 TO ADVOCACY GROUPS TO CAPTURE 399 00:15:36,666 --> 00:15:38,100 THE CONSENSUS BETWEEN THE TOPIC 400 00:15:38,100 --> 00:15:40,436 AREAS ALIGNED IN THE PORTFOLIO 401 00:15:40,436 --> 00:15:42,471 AND SOLICITING FOR THE RESEARCH 402 00:15:42,471 --> 00:15:42,972 THAT'S NEEDED. 403 00:15:42,972 --> 00:15:45,341 THE GOALS WILL STAN ACROSS THE 404 00:15:45,341 --> 00:15:48,778 CONTINUUM OF CARE FOUNDATIONAL 405 00:15:48,778 --> 00:15:52,148 PREVENTION, DIAGNOSIS, TREATMENT 406 00:15:52,148 --> 00:15:54,150 AND AN INVESTIGATOR BY LAW THEY 407 00:15:54,150 --> 00:15:55,685 HAVE TO ADDRESS TOPIC AREAS 408 00:15:55,685 --> 00:15:57,286 ASSIGNED TO THE PROGRAM AND MAKE 409 00:15:57,286 --> 00:15:57,887 THEM ADDRESS ONE OF THE 410 00:15:57,887 --> 00:16:00,756 STRATEGIC GOALS ASSIGNED TO THAT 411 00:16:00,756 --> 00:16:04,994 PORTFOLIO. 412 00:16:04,994 --> 00:16:06,562 THIS IS JUST AN EXAMPLE OF WHAT 413 00:16:06,562 --> 00:16:08,130 THIS WOULD LOOK LIKE IN OUR 414 00:16:08,130 --> 00:16:09,498 FUNDING OPPORTUNITIES. 415 00:16:09,498 --> 00:16:11,434 EACH PROGRAM RELEASES THEIR OWN 416 00:16:11,434 --> 00:16:11,968 FUNDING OPPORTUNITY. 417 00:16:11,968 --> 00:16:13,369 EACH OF OUR FUNDING 418 00:16:13,369 --> 00:16:14,503 OPPORTUNITIES IS GOING TO LIST 419 00:16:14,503 --> 00:16:16,772 TOPIC AREAS ELIGIBLE. 420 00:16:16,772 --> 00:16:17,707 THE PORTFOLIO YOU'LL SEE AN 421 00:16:17,707 --> 00:16:19,442 EXAMPLE OF THE TOPIC AREAS 422 00:16:19,442 --> 00:16:21,911 ASSIGNED TO INTERNAL MEDICINE IN 423 00:16:21,911 --> 00:16:24,080 FY24 AND THEN EXAMPLES OF THE 424 00:16:24,080 --> 00:16:26,315 STRATEGIC GOALS AND WHAT WE'RE 425 00:16:26,315 --> 00:16:27,416 LOOKING FOR. 426 00:16:27,416 --> 00:16:28,818 THE GOALS ARE BROAD AND MEANT TO 427 00:16:28,818 --> 00:16:30,453 BE BROAD AND WE'RE LOOKING AT 428 00:16:30,453 --> 00:16:31,654 CONSENSUS OF THE TOPIC AREAS AND 429 00:16:31,654 --> 00:16:36,559 TO MAKE SURE WE'RE NOTE LIMITING 430 00:16:36,559 --> 00:16:37,193 CREATI 431 00:16:37,193 --> 00:16:37,493 CREATIVITY. 432 00:16:37,493 --> 00:16:39,328 WE HAVE THE ABILITY TO SOLICIT A 433 00:16:39,328 --> 00:16:41,330 BROAD RANGE OF RESEARCH IN 434 00:16:41,330 --> 00:16:42,431 DIFFERENT AREAS OF PRODUCT 435 00:16:42,431 --> 00:16:42,732 DEVELOPMENT. 436 00:16:42,732 --> 00:16:46,569 WE'RE MAKING SURE THAT WE KEEP 437 00:16:46,569 --> 00:16:48,604 THEM BROAD AND THAT EVERY NEW 438 00:16:48,604 --> 00:16:50,506 PROPOSAL HAS A VENUE TO COME IN 439 00:16:50,506 --> 00:16:51,340 AND GET FUNDING THROUGH THE 440 00:16:51,340 --> 00:16:53,776 PROGRAM. 441 00:16:53,776 --> 00:16:56,312 HERE ARE THE OTHER EXAMPLES OF 442 00:16:56,312 --> 00:16:58,114 STRATEGIC GOALS THAT WE HAVE 443 00:16:58,114 --> 00:17:00,883 UNDER TREATMENT IN EPIDEMIOLOGY. 444 00:17:00,883 --> 00:17:03,386 SO LIKE I SAID, WE CAN ALL EACH 445 00:17:03,386 --> 00:17:06,389 INDIVIDUALLY RELEASE THE FUNDING 446 00:17:06,389 --> 00:17:07,223 OPPORTUNITIES FOR THIS PROGRAM. 447 00:17:07,223 --> 00:17:12,395 WE RELEASED SIX FUNDING 448 00:17:12,395 --> 00:17:13,062 OPPORTUNITIES AND BASIC RESEARCH 449 00:17:13,062 --> 00:17:15,331 ALL THE WAY TO CLINICAL TRIALS. 450 00:17:15,331 --> 00:17:18,167 WE HAVE TWO AWARDS IN BASIC 451 00:17:18,167 --> 00:17:20,336 RESEARCH THE DISCOVERY AND 452 00:17:20,336 --> 00:17:23,172 INVESTIGATOR RESEARCH AWARD THE 453 00:17:23,172 --> 00:17:25,341 IIRA IS SIMILAR TO THE RO1 TO 454 00:17:25,341 --> 00:17:25,775 THE NIH. 455 00:17:25,775 --> 00:17:27,710 THEN WE MOVE TO TRANSLATIONAL 456 00:17:27,710 --> 00:17:27,977 RESEARCH. 457 00:17:27,977 --> 00:17:33,349 WE HAVE THE IMPACT AWARD THAT'S 458 00:17:33,349 --> 00:17:34,784 BASICALLY LOOKING AT USE 459 00:17:34,784 --> 00:17:36,752 INSPIRED SCIENCE MORE DEVELOPED 460 00:17:36,752 --> 00:17:41,323 AND TTGA DEVELOPMENT AWARD AND 461 00:17:41,323 --> 00:17:44,460 THAT IS BASED ON THE PREMISE BY 462 00:17:44,460 --> 00:17:46,395 THE END OF THE PERIOD OF 463 00:17:46,395 --> 00:17:47,830 PERFORMANCE THE P.I. WOULD BE 464 00:17:47,830 --> 00:17:49,765 READY TO SUBMIT AN IND. 465 00:17:49,765 --> 00:17:51,600 THEN WE MOVE TO OUR CLINICAL 466 00:17:51,600 --> 00:17:51,867 TRIALS. 467 00:17:51,867 --> 00:17:54,003 ONE ON CLINICAL RESEARCH AND 468 00:17:54,003 --> 00:17:56,172 EVERYTHING NOT FDA REGULATED AND 469 00:17:56,172 --> 00:17:57,606 OUR CLINICAL TRIAL AWARD WHICH 470 00:17:57,606 --> 00:17:58,541 IS POPULAR. 471 00:17:58,541 --> 00:18:01,444 WE DO NOT HAVE A DIRECT COST 472 00:18:01,444 --> 00:18:03,879 LIMIT AND IT'S REALLY A LOT OF 473 00:18:03,879 --> 00:18:07,817 WHAT THE PMRP FUNDS. 474 00:18:07,817 --> 00:18:10,586 SO THESE ARE THE AWARDS FUNDED 475 00:18:10,586 --> 00:18:12,488 SO FAR FOR FY23. 476 00:18:12,488 --> 00:18:15,357 THE YEAR WE HAVE LYMPHEDEMA AND 477 00:18:15,357 --> 00:18:16,792 LYMPHATIC DISEASES. 478 00:18:16,792 --> 00:18:19,128 FOR FY24 THE PROPOSALS ARE STILL 479 00:18:19,128 --> 00:18:19,495 BE REVIEWED. 480 00:18:19,495 --> 00:18:22,098 WE HAVE A RECOMMENDED FOR 481 00:18:22,098 --> 00:18:23,766 FUNDING LIST LATER IN THE YEAR 482 00:18:23,766 --> 00:18:25,634 FOR SOME AWARD MECHANISMS AND 483 00:18:25,634 --> 00:18:27,336 NEXT YEAR FOR THE CLINICAL 484 00:18:27,336 --> 00:18:27,570 TRIALS. 485 00:18:27,570 --> 00:18:32,441 YOU CAN SEE SO FAR, WE HAVE 486 00:18:32,441 --> 00:18:34,009 FUNDED A LITTLE BIT SHY OF $7 487 00:18:34,009 --> 00:18:34,243 MILLION. 488 00:18:34,243 --> 00:18:35,711 WE HAVE THREE DISCOVERY AWARDS 489 00:18:35,711 --> 00:18:40,783 WHICH ARE ONES WITH DIRECT COST 490 00:18:40,783 --> 00:18:44,286 AND INNOVATIVE RESEARCH FOR 250K 491 00:18:44,286 --> 00:18:47,990 AND A BASIC AN IIRA FOR $2.6 492 00:18:47,990 --> 00:18:50,292 MILLION AND A CLINICAL TRIAL. 493 00:18:50,292 --> 00:18:53,729 I'M HAPPY TO PROVIDE MORE 494 00:18:53,729 --> 00:18:54,330 INFORMATION IF ANYBODY FEELS 495 00:18:54,330 --> 00:19:00,770 COMPELLED TO REACH OUT TO ME. 496 00:19:00,770 --> 00:19:02,204 I'LL PAUSE HERE. 497 00:19:02,204 --> 00:19:03,606 I KNOW IT WAS A LOT OF 498 00:19:03,606 --> 00:19:05,508 INFORMATION AND HOPE IT WAS 499 00:19:05,508 --> 00:19:07,476 HELPFUL AND GRATEFUL TO BE HERE 500 00:19:07,476 --> 00:19:08,911 TO TALK ABOUT CDMRP. 501 00:19:08,911 --> 00:19:11,514 >> THANK YOU FOR THE 502 00:19:11,514 --> 00:19:11,847 PRESENTATION. 503 00:19:11,847 --> 00:19:14,817 WE'LL HAVE QUESTIONS AND ANSWERS 504 00:19:14,817 --> 00:19:17,119 DURING THE PERIOD TO FOLLOW. 505 00:19:17,119 --> 00:19:21,657 NEXT I'LL INTRODUCE DR. AMY 506 00:19:21,657 --> 00:19:26,061 JENKINS AND DR. KIM STEELE 507 00:19:26,061 --> 00:19:26,562 REPRESENTING ARPA-H. 508 00:19:26,562 --> 00:19:29,198 >> CAN EVERYBODY HEAR ME OKAY? 509 00:19:29,198 --> 00:19:29,465 WONDERFUL. 510 00:19:29,465 --> 00:19:29,965 THANK YOU. 511 00:19:29,965 --> 00:19:31,467 THIS MORNING KIMBERLY AND I WILL 512 00:19:31,467 --> 00:19:33,202 DO A TAG TEAM. 513 00:19:33,202 --> 00:19:35,237 I'LL GIVE EVERYBODY AN OVERVIEW 514 00:19:35,237 --> 00:19:36,305 OF ARPA-H, OUR MODEL. 515 00:19:36,305 --> 00:19:38,007 SIMILAR TO WHAT YOU HEARD FROM 516 00:19:38,007 --> 00:19:39,742 CEASE CELIA AND KIMBERLY WILL 517 00:19:39,742 --> 00:19:42,645 TALK ABOUT OUR TWO PROGRAMS IN 518 00:19:42,645 --> 00:19:43,879 LYMPHATIC DISEASE. 519 00:19:43,879 --> 00:19:45,681 ARPA-H IS A FAIRLY NEW 520 00:19:45,681 --> 00:19:46,448 ORGANIZATION WITHIN THE 521 00:19:46,448 --> 00:19:48,217 DEPARTMENT OF HEALTH AND HUMAN 522 00:19:48,217 --> 00:19:48,651 SERVICES. 523 00:19:48,651 --> 00:19:50,319 WE HAVE A SINGULAR MISSION TO 524 00:19:50,319 --> 00:19:55,224 ACCELERATE BETTER HEALTH 525 00:19:55,224 --> 00:19:57,459 OUTCOMES FOR EVERYONE. 526 00:19:57,459 --> 00:20:01,363 SO ARPA-H IS STOOD UP IN THE 527 00:20:01,363 --> 00:20:05,467 DIVISION OF THE DARPA THE 528 00:20:05,467 --> 00:20:06,168 DEFENSE ADVANCE RESEARCH AGENCY 529 00:20:06,168 --> 00:20:08,103 AN AGENCY I WAS AT 10 YEARS IN 530 00:20:08,103 --> 00:20:10,272 THE BIOLOGICAL TECHNOLOGIES 531 00:20:10,272 --> 00:20:13,442 OFFICE PRIOR TO ARPA-H. 532 00:20:13,442 --> 00:20:15,744 DARPA TO GIVE PRIMER ON THIS WAS 533 00:20:15,744 --> 00:20:18,647 STOOD UP IN 1958 IN RESPONSE TO 534 00:20:18,647 --> 00:20:20,082 THE LAUNCH OF THE SPUTNIK 535 00:20:20,082 --> 00:20:20,349 SATELLITE. 536 00:20:20,349 --> 00:20:23,219 THE ORGANIZATION WAS STOOD UP TO 537 00:20:23,219 --> 00:20:25,821 FUND RESEARCH THAT WAS 538 00:20:25,821 --> 00:20:28,757 HIGH-RISK, HIGH-REWARD, 539 00:20:28,757 --> 00:20:30,125 HIGH-IMPACT AND MEANT TO BE 540 00:20:30,125 --> 00:20:31,594 FOCUSSED RESEARCH TO MAKE 541 00:20:31,594 --> 00:20:32,761 INVESTMENTS IN TECHNOLOGIES FOR 542 00:20:32,761 --> 00:20:33,929 NATIONAL SECURITY. 543 00:20:33,929 --> 00:20:36,899 THAT'S WHAT DARPA HAS BEEN DOING 544 00:20:36,899 --> 00:20:38,467 ABOUT 65 YEARS. 545 00:20:38,467 --> 00:20:41,537 IN THE SPRING OF 2022, PRESIDENT 546 00:20:41,537 --> 00:20:42,872 BIDEN SAID THE ADMINISTRATION 547 00:20:42,872 --> 00:20:44,340 WOULD START AN ORGANIZATION THAT 548 00:20:44,340 --> 00:20:47,743 WOULD TAKE THAT MODEL OF PIVOTAL 549 00:20:47,743 --> 00:20:51,013 FOCUSSED INVESTMENTS AND DARPA 550 00:20:51,013 --> 00:20:51,780 HAS APPLIED IT TO THE HEALTH 551 00:20:51,780 --> 00:20:54,149 CARE CENTER. 552 00:20:54,149 --> 00:20:56,218 THE STAND UP OF ARPA-H BEGAN IN 553 00:20:56,218 --> 00:20:59,355 SPRING OF 2022 IN THE SAME 554 00:20:59,355 --> 00:20:59,555 MODEL. 555 00:20:59,555 --> 00:21:02,224 WE'LL USING THE SLIDE TO TALK 556 00:21:02,224 --> 00:21:06,428 ABOUT IT SOMETIMES THE GOAL IS 557 00:21:06,428 --> 00:21:08,998 TO MAKE ACCELERATED FOCUSSED 558 00:21:08,998 --> 00:21:09,298 INVESTMENTS. 559 00:21:09,298 --> 00:21:11,200 MOST THE TIME THOSE FAIL AND 560 00:21:11,200 --> 00:21:12,768 WE'RE HITTING THE ACCELERATOR 561 00:21:12,768 --> 00:21:14,770 AND YOU'LL SEE THE TIME LINES IN 562 00:21:14,770 --> 00:21:15,471 KIMBERLY'S SLIDES. 563 00:21:15,471 --> 00:21:19,108 OFTEN THINGS WE'RE DOING ARE NOT 564 00:21:19,108 --> 00:21:20,576 ACHIEVABLE BUT OCCASIONALLY YOU 565 00:21:20,576 --> 00:21:23,679 ARE SUCCESSFUL AND DISCOVER 566 00:21:23,679 --> 00:21:25,581 THINGS LIKE THE INTERNET, 567 00:21:25,581 --> 00:21:29,885 STEALTH TECHNOLOGY AND 568 00:21:29,885 --> 00:21:32,121 SELF-DRIVING CARS AND mRNA 569 00:21:32,121 --> 00:21:34,256 VACCINES AND THE MODEL WORKS TO 570 00:21:34,256 --> 00:21:36,325 MAKE THESE LEAPS IN TECHNOLOGY. 571 00:21:36,325 --> 00:21:38,994 THAT'S WHAT WE'RE HERE FOR. 572 00:21:38,994 --> 00:21:40,729 I'LL TALK A LITTLE BIT ABOUT 573 00:21:40,729 --> 00:21:42,531 WHAT THAT MODEL IS WHEN I SAY 574 00:21:42,531 --> 00:21:44,300 WE'RE STOOD UP IN THE DIVISION 575 00:21:44,300 --> 00:21:48,337 OF DARPA, WHAT IS IT AND WHAT'S 576 00:21:48,337 --> 00:21:49,438 DIFFERENT ABOUT ARPA-H? 577 00:21:49,438 --> 00:21:51,340 WE'RE A FUNDING AGENCY. 578 00:21:51,340 --> 00:21:55,311 WE HAVE NO INTERNAL RESEARCH 579 00:21:55,311 --> 00:21:56,779 LABS AND OUR PROGRAM MANAGERS 580 00:21:56,779 --> 00:21:58,580 BRING IDEAS TO THE AGENCY. 581 00:21:58,580 --> 00:22:00,549 WE'RE NOT IN THE HEALTH SCIENCE 582 00:22:00,549 --> 00:22:01,617 FUTURES OFFICE AT ARPA-H. 583 00:22:01,617 --> 00:22:03,252 I'M NOT DRIVING THE MISSION OR 584 00:22:03,252 --> 00:22:06,221 SAYING WHAT WE WILL OR WILL NOT 585 00:22:06,221 --> 00:22:06,889 WORK ON. 586 00:22:06,889 --> 00:22:08,891 OUR PROGRAM MANAGERS COME IN AND 587 00:22:08,891 --> 00:22:11,093 SAY THIS A PROBLEM WE NEED TO 588 00:22:11,093 --> 00:22:12,761 ADDRESS AND IF I AGREE THEY'RE 589 00:22:12,761 --> 00:22:14,830 THE RIGHT PERSON TO ADDRESS THE 590 00:22:14,830 --> 00:22:17,900 PROBLEM THEY COME UP AND DRIVE 591 00:22:17,900 --> 00:22:18,233 THAT PROGRAM. 592 00:22:18,233 --> 00:22:22,905 SO IT'S IT'S A BOTTOM-UP AGENCY 593 00:22:22,905 --> 00:22:27,142 AND NOT LOOKING FOR THE NEXT 594 00:22:27,142 --> 00:22:28,777 INCREMENTAL STEP BUT TAKE THE 595 00:22:28,777 --> 00:22:30,980 LEAP AND WILL PROBABLY MISS, 596 00:22:30,980 --> 00:22:31,880 MANY TIMES WE'LL MISS BUT IN THE 597 00:22:31,880 --> 00:22:33,782 PROCESS OF TAKING THAT LEAP WE 598 00:22:33,782 --> 00:22:37,786 LEARN A LOT ALONG THE WAY AND 599 00:22:37,786 --> 00:22:38,354 SOMETIMES WE'RE SUCCESSFUL. 600 00:22:38,354 --> 00:22:39,822 THAT'S PART OF THE GOAL HERE. 601 00:22:39,822 --> 00:22:43,192 WHAT SETS US APART IS OUR 602 00:22:43,192 --> 00:22:44,493 PROGRAM MANAGERS ARE WHO DRIVE 603 00:22:44,493 --> 00:22:45,861 THE SCIENCE BEHIND THE AGENCY. 604 00:22:45,861 --> 00:22:48,197 THEY HAVE FULL AUTONOMY WITHIN 605 00:22:48,197 --> 00:22:48,764 THEIR PROGRAM. 606 00:22:48,764 --> 00:22:53,135 WE DON'T DO STUDY SECTIONS, WE 607 00:22:53,135 --> 00:22:55,571 DO HAVE GOVERNMENT REVIEW OF OUR 608 00:22:55,571 --> 00:22:58,574 PROPOSALS, THREE REVIEWERS. 609 00:22:58,574 --> 00:23:02,845 ULTIMATELY THE DECISION LIES 610 00:23:02,845 --> 00:23:04,480 WITH KIMBERLY AND ME AS HER 611 00:23:04,480 --> 00:23:06,181 CHECK TO NOT DO ANYTHING TOO 612 00:23:06,181 --> 00:23:09,351 CRAZY BUT WE WANT TO FUND THE 613 00:23:09,351 --> 00:23:11,587 RISKY IDEAS AND WE ARE TRUSTING 614 00:23:11,587 --> 00:23:14,356 HER TO FIND AND FUND THOSE RISKY 615 00:23:14,356 --> 00:23:14,556 IDEAS. 616 00:23:14,556 --> 00:23:17,226 OUR PROGRAM MANAGERS AND OUR 617 00:23:17,226 --> 00:23:18,260 TECHNICAL LEADERSHIP HAVE TERM 618 00:23:18,260 --> 00:23:19,294 LIMITS. 619 00:23:19,294 --> 00:23:19,995 EVERYBODY IN THE ORGANIZATION 620 00:23:19,995 --> 00:23:20,629 HAS TO LEAD. 621 00:23:20,629 --> 00:23:23,032 WE HAVE THREE-YEAR TERMS AND CAN 622 00:23:23,032 --> 00:23:24,633 BE RENEWED FOR ADDITIONAL THREE 623 00:23:24,633 --> 00:23:26,869 YEAR FOR MAXIMUM OF SIX YEARS 624 00:23:26,869 --> 00:23:28,504 AND THEN ALL LEAVE. 625 00:23:28,504 --> 00:23:31,006 THAT'S SET UP ON PURPOSE SO THE 626 00:23:31,006 --> 00:23:32,574 IDEA IS CONSTANTLY TRYING TO 627 00:23:32,574 --> 00:23:35,077 TAKE THE NEXT LEAP. 628 00:23:35,077 --> 00:23:37,279 WE'RE VERY INTERESTED IN 629 00:23:37,279 --> 00:23:39,248 LYMPHATICS BECAUSE KIMBERLY SAID 630 00:23:39,248 --> 00:23:41,784 WE SHOULD BE AND WE BELIEVED HER 631 00:23:41,784 --> 00:23:43,952 BUT SIX YEARS FROM NOW WE WON'T 632 00:23:43,952 --> 00:23:44,653 BE IN THE LYMPHATIC SPACE. 633 00:23:44,653 --> 00:23:46,455 WE'LL PUT THE MONEY WE'LL PUT IN 634 00:23:46,455 --> 00:23:49,058 AND THE HOPE IS TO MAKE RADICAL 635 00:23:49,058 --> 00:23:52,327 CHANGE IN THE FIELD AND PUSH THE 636 00:23:52,327 --> 00:23:54,430 FIELD FORWARD BY DECADE TO CATCH 637 00:23:54,430 --> 00:23:57,733 TO WHERE THE FIELD IS FOR OTHER 638 00:23:57,733 --> 00:23:59,535 DISEASES LIKE CARDIOVASCULAR 639 00:23:59,535 --> 00:24:03,205 DISEASE BUT WON'T FUND THIS IN 640 00:24:03,205 --> 00:24:04,106 PERPETUITY AND THE EFFORTS WILL 641 00:24:04,106 --> 00:24:07,376 END AND WILL NOT BE RENEWING THE 642 00:24:07,376 --> 00:24:08,911 EFFORTS. 643 00:24:08,911 --> 00:24:10,813 I'LL BRIEFLY TALK ABOUT WHAT ARE 644 00:24:10,813 --> 00:24:15,184 STAKEHOLDERS AND THE HEALTH ECO 645 00:24:15,184 --> 00:24:17,319 SYSTEM IN WE WORK WITH OUR 646 00:24:17,319 --> 00:24:18,287 PATIENT GROUPS AND HEALTH CARE 647 00:24:18,287 --> 00:24:19,488 PROVIDERS TO HEAR WHAT THE 648 00:24:19,488 --> 00:24:20,089 PROBLEM IS. 649 00:24:20,089 --> 00:24:21,356 DOWN ON THE LEFT SIDE IS WHAT I 650 00:24:21,356 --> 00:24:23,425 WANT TO TALK ABOUT THE MOST OUR 651 00:24:23,425 --> 00:24:23,792 PERFORMERS. 652 00:24:23,792 --> 00:24:26,628 WE DON'T CALL THE TEAMS WE FUND 653 00:24:26,628 --> 00:24:28,097 GRANTEES BECAUSE WE DON'T ISSUE 654 00:24:28,097 --> 00:24:29,631 GRANTS. 655 00:24:29,631 --> 00:24:31,967 WE ONLY ISSUE OTHER TRANSACTIONS 656 00:24:31,967 --> 00:24:33,368 OR COOPERATIVE AGREEMENTS BUT 657 00:24:33,368 --> 00:24:36,605 WORK WITH ACADEMIA AND INDUSTRY 658 00:24:36,605 --> 00:24:39,475 SMALL AND LARGE AND NONPROFITS 659 00:24:39,475 --> 00:24:40,776 TO REACH THE GOALS OF THE 660 00:24:40,776 --> 00:24:44,179 ORGANIZATION. 661 00:24:44,179 --> 00:24:46,715 THESE ARE OUR INITIAL FOCUS 662 00:24:46,715 --> 00:24:48,517 AREAS ALIGN TO OUR FOUR MISSION 663 00:24:48,517 --> 00:24:49,651 OFFICES, HEALTH SCIENCE FEATURES 664 00:24:49,651 --> 00:24:51,353 IS THE OFFICE I'M THE DIRECTOR 665 00:24:51,353 --> 00:24:52,721 OF KIMBERLY IS A PROGRAM MANAGER 666 00:24:52,721 --> 00:24:53,088 IN. 667 00:24:53,088 --> 00:24:56,158 I WON'T GO IN OTHER OFFICES IN 668 00:24:56,158 --> 00:24:58,360 THE INTEREST OF TIME YOU CAN 669 00:24:58,360 --> 00:25:00,762 GUESS A PROACTIVE AND 670 00:25:00,762 --> 00:25:02,798 PREVENTATIVE AND LOTS OF 671 00:25:02,798 --> 00:25:03,565 MANUFACTURING AND SYSTEMS 672 00:25:03,565 --> 00:25:06,335 TECHNOLOGIES IN OTHER OFFICES. 673 00:25:06,335 --> 00:25:09,204 I HAVE MENTIONED IDEATION AT 674 00:25:09,204 --> 00:25:11,006 ARPA-H STARTS AND ENDS WITH THE 675 00:25:11,006 --> 00:25:11,373 PROGRAM MANAGER. 676 00:25:11,373 --> 00:25:14,309 THEY COME IN WITH THE IDEA AND 677 00:25:14,309 --> 00:25:16,445 THE PROGRAMS ARE FAIRLY LARGE 678 00:25:16,445 --> 00:25:16,745 INITIATIVES. 679 00:25:16,745 --> 00:25:18,580 YOU'LL HEAR TWO OF KIMBERLY'S 680 00:25:18,580 --> 00:25:20,048 TODAY AND WHERE WE DO THE BULK 681 00:25:20,048 --> 00:25:22,084 OF OUR FUNDING. 682 00:25:22,084 --> 00:25:24,720 WE'LL DO A SOLICITATION AND 683 00:25:24,720 --> 00:25:26,455 TEAMS WILL COME AND SUBMIT THEIR 684 00:25:26,455 --> 00:25:27,756 PROPOSALS TO THAT PROGRAM AND TO 685 00:25:27,756 --> 00:25:32,794 THE REVIEW PROCESS AND KIMBERLY 686 00:25:32,794 --> 00:25:34,029 WILL CHOOSE THE TEAMS SHE WANTS 687 00:25:34,029 --> 00:25:35,330 TO FUND IN THAT PROGRAM AREA. 688 00:25:35,330 --> 00:25:38,700 WE FUND IDEAS THAT COME 689 00:25:38,700 --> 00:25:39,034 OCCASIONALLY. 690 00:25:39,034 --> 00:25:41,103 WE DO HAVE AN OPEN CALL FOR 691 00:25:41,103 --> 00:25:43,939 PROPOSALS ON THE WEBSITE WE CALL 692 00:25:43,939 --> 00:25:45,908 INNOVATIVE SOLUTIONS OFFERINGS. 693 00:25:45,908 --> 00:25:49,344 IT'S ESSENTIALLY AN OPEN CALL 694 00:25:49,344 --> 00:25:49,511 RFP. 695 00:25:49,511 --> 00:25:51,146 PEOPLE CAN BRING OUTSIDE IDEAS. 696 00:25:51,146 --> 00:25:53,248 WE DON'T WANT TO MISS THEM 697 00:25:53,248 --> 00:25:57,052 BECAUSE PROGRAM MANAGE ERS MAY T 698 00:25:57,052 --> 00:25:59,321 BE IN THAT SPACE BUT ISSUED 699 00:25:59,321 --> 00:25:59,888 THROUGH OUR PROGRAMS. 700 00:25:59,888 --> 00:26:01,290 I TALKED BRIEFLY ABOUT SOME OF 701 00:26:01,290 --> 00:26:01,623 OUR PROGRAMS. 702 00:26:01,623 --> 00:26:04,059 THIS IS AN EXCITING SLIDE FOR US 703 00:26:04,059 --> 00:26:08,096 BEING WE STOOD UP IN 2022 OUR 704 00:26:08,096 --> 00:26:08,931 DIRECTOR JOINED THE AGENCY IN 705 00:26:08,931 --> 00:26:10,566 THE FALL OF 2022 AND WE OPENED 706 00:26:10,566 --> 00:26:12,768 YOU'RE FIRST ANNOUNCEMENT FOR 707 00:26:12,768 --> 00:26:14,203 FUNDING IN THE SPRING OF 2023 708 00:26:14,203 --> 00:26:15,837 WHEN I JOINED AND OUR FIRST 709 00:26:15,837 --> 00:26:20,776 PROGRAM WAS LAUNCHED IN APRIL OF 710 00:26:20,776 --> 00:26:23,278 '23 CALLED THE NYTRO PROGRAM 711 00:26:23,278 --> 00:26:25,214 AROUND OSTEOARTHRITIS AND SEE 712 00:26:25,214 --> 00:26:28,050 THE VARIETY OF PROGRAMS 713 00:26:28,050 --> 00:26:28,317 LAUNCHED. 714 00:26:28,317 --> 00:26:30,819 I'LL QUICKLY PULL OUT A COUPLE 715 00:26:30,819 --> 00:26:32,254 THINGS THAT ARE INTERESTING IN 716 00:26:32,254 --> 00:26:33,488 THE GRAPHS I CAN DISCUSS. 717 00:26:33,488 --> 00:26:36,091 WE HAVE THE OSTEOARTHRITIS 718 00:26:36,091 --> 00:26:41,630 PROGRAM CALLED NYTRO AND THE EYE 719 00:26:41,630 --> 00:26:42,664 TRANSPLANTATION AND RETINAL 720 00:26:42,664 --> 00:26:43,832 REGENERATION PROGRAM. 721 00:26:43,832 --> 00:26:45,300 WE HAVE EFFORTS AROUND BIO 722 00:26:45,300 --> 00:26:48,770 PRINTING OF ORGANS AND YOU'LL 723 00:26:48,770 --> 00:26:50,138 HEAR EXCITING IDEAS IN THE 724 00:26:50,138 --> 00:26:52,374 LYMPHATIC SPACE FROM KIMBERLY. 725 00:26:52,374 --> 00:26:54,876 A LITTLE BIT OF A SMATTERING. 726 00:26:54,876 --> 00:26:56,778 WE'RE FUNDING HOPEFULLY CRAZY 727 00:26:56,778 --> 00:27:02,618 OUT THERE IDEAS THAT PEOPLE SAY 728 00:27:02,618 --> 00:27:04,753 THAT'S CRAZY TRANSPLANTING AN 729 00:27:04,753 --> 00:27:10,659 EYE AND TRYING TO GET THE 730 00:27:10,659 --> 00:27:12,761 RETINAL NERVE TO REGENERATE AND 731 00:27:12,761 --> 00:27:15,764 WE UNDERSTAND WE MAY NOT BE 732 00:27:15,764 --> 00:27:16,064 SUCCESSFUL. 733 00:27:16,064 --> 00:27:19,501 BUT THAT'S THE GOALS OF OUR 734 00:27:19,501 --> 00:27:21,370 AGENCY TO PUT THOSE SHOTS ON 735 00:27:21,370 --> 00:27:24,273 GOALS AND SEE WHAT ADVANCES WE 736 00:27:24,273 --> 00:27:25,941 CAN MAKE AND IF SUCCESSFUL PUSH 737 00:27:25,941 --> 00:27:31,613 THE FIELD FORWARD BY SEVERAL 738 00:27:31,613 --> 00:27:31,880 DECADES. 739 00:27:31,880 --> 00:27:33,782 I'LL STOP HERE. 740 00:27:33,782 --> 00:27:35,751 THAT'S OUR MODEL VERY FOCUSSED 741 00:27:35,751 --> 00:27:36,618 INVESTMENTS AND I'LL LET 742 00:27:36,618 --> 00:27:38,020 KIMBERLY TALK YOU THROUGH A 743 00:27:38,020 --> 00:27:39,354 COUPLE OF HER PROGRAMS TO MAKE 744 00:27:39,354 --> 00:27:41,390 IT MORE REALISTIC WHAT THE 745 00:27:41,390 --> 00:27:42,424 PROGRAMS LOOK LIKE. 746 00:27:42,424 --> 00:27:46,828 OVER TO YOU. 747 00:27:46,828 --> 00:27:48,230 >> HI, EVERYONE. 748 00:27:48,230 --> 00:27:50,065 IT'S WONDERFUL TO BE HERE. 749 00:27:50,065 --> 00:27:52,301 AND I'M GRATEFUL TO BE HERE AND 750 00:27:52,301 --> 00:27:57,239 GRATEFUL TO DR. JENKINS FOR 751 00:27:57,239 --> 00:27:58,674 BEING A REPRESENTATIVE OF ARPA-H 752 00:27:58,674 --> 00:27:59,708 AS PROGRAM MANAGER. 753 00:27:59,708 --> 00:28:04,646 FOR THOSE WHO MAY NOT KNOW ME 754 00:28:04,646 --> 00:28:06,882 BEFORE I JUMP IN THE PROGRAMS, 755 00:28:06,882 --> 00:28:08,083 AND A LOT OF YOU HERE DO KNOW ME 756 00:28:08,083 --> 00:28:14,089 BUT FOR THOSE WHO DON'T, I AM A 757 00:28:14,089 --> 00:28:15,891 SURGEON BY TRADE. 758 00:28:15,891 --> 00:28:18,293 I WAS AT JOHNS HOPKINS FOR 14 759 00:28:18,293 --> 00:28:21,997 YEARS AND MY AREA OF EXPERTISE 760 00:28:21,997 --> 00:28:25,133 IS IN BARIATRIC SURGERY AND TALK 761 00:28:25,133 --> 00:28:27,202 TRAUMA AND CRITICAL CARE CALLS 762 00:28:27,202 --> 00:28:30,906 AT HOPKINS AND I RAN A 763 00:28:30,906 --> 00:28:34,443 TRANSLATIONAL LAB IN GUT-BRAIN 764 00:28:34,443 --> 00:28:37,779 AXIS AND OBESITY MEDICINE SO AN 765 00:28:37,779 --> 00:28:38,246 ACADEMIC PERSON. 766 00:28:38,246 --> 00:28:40,215 IN 2016 OUR LIFE CHANGED. 767 00:28:40,215 --> 00:28:41,516 MY FAMILY'S LIFE. 768 00:28:41,516 --> 00:28:44,753 I HAVE TWO BOYS AND THE OLDEST 769 00:28:44,753 --> 00:28:48,223 WAS DIAGNOSED AFTER A YEAR-LONG 770 00:28:48,223 --> 00:28:51,326 DIAGNOSTIC ODYSSEY WITH AN ULTRA 771 00:28:51,326 --> 00:28:52,794 RARE LYMPHATIC DISEASE AND WE 772 00:28:52,794 --> 00:28:54,996 WERE TOLD NOT TO READ ABOUT IT 773 00:28:54,996 --> 00:28:57,966 AND GO HOME BECAUSE IT WAS SO 774 00:28:57,966 --> 00:28:59,801 DAUNTING. 775 00:28:59,801 --> 00:29:01,570 LUCKILY I WAS IN A PLACE WHERE I 776 00:29:01,570 --> 00:29:03,305 COULD GET THE HELP I NEEDED. 777 00:29:03,305 --> 00:29:04,806 I REACHED OUT TO EVERYONE AND 778 00:29:04,806 --> 00:29:05,207 ANYONE. 779 00:29:05,207 --> 00:29:06,508 SOME OF YOU SITTING AT THE TABLE 780 00:29:06,508 --> 00:29:16,051 AND YOU RESPONDED QUICKLY. 781 00:29:16,051 --> 00:29:23,058 WHAT I LEARNED THAT NAVIGATING 782 00:29:23,058 --> 00:29:24,726 THE HEALTH CARE SYSTEM WAS TOUGH 783 00:29:24,726 --> 00:29:26,695 FOR A MOM AND PHYSICIAN. 784 00:29:26,695 --> 00:29:29,998 WHAT WAS IT LIKE FOR OTHER 785 00:29:29,998 --> 00:29:30,665 PARENTS? 786 00:29:30,665 --> 00:29:32,801 IT WAS A SYSTEM WE DON'T LEARN 787 00:29:32,801 --> 00:29:33,869 ENOUGH ABOUT OR APPRECIATE 788 00:29:33,869 --> 00:29:35,103 ENOUGH IN MEDICAL SCHOOL AND 789 00:29:35,103 --> 00:29:35,470 SURGERY. 790 00:29:35,470 --> 00:29:36,605 I DIDN'T LEARN ABOUT THE 791 00:29:36,605 --> 00:29:37,272 LYMPHATIC SYSTEM. 792 00:29:37,272 --> 00:29:42,577 I KNEW TO STAY AWAY FROM IT. 793 00:29:42,577 --> 00:29:44,880 IN 2019 I STEPPED AWAY FROM MY 794 00:29:44,880 --> 00:29:47,048 POSITION AND WORKED WITH 795 00:29:47,048 --> 00:29:47,349 NONPROFITS. 796 00:29:47,349 --> 00:29:50,852 BECAUSE I WANTED TO HELP 797 00:29:50,852 --> 00:29:51,153 RESEARCHERS. 798 00:29:51,153 --> 00:29:56,124 I SPENT ABOUT A YEAR IN A SMALL 799 00:29:56,124 --> 00:29:57,826 NONPROFIT AND WAS FRUSTRATED 800 00:29:57,826 --> 00:29:59,428 BECAUSE THEY COULD ONLY DO SO 801 00:29:59,428 --> 00:30:02,197 MUCH AND THE SCIENCE WAS NOT 802 00:30:02,197 --> 00:30:05,033 MOVING FAST ENOUGH WHERE WE 803 00:30:05,033 --> 00:30:08,770 NEEDED TO BE FOR MY CHILD AND 804 00:30:08,770 --> 00:30:09,104 THE COMMUNITY. 805 00:30:09,104 --> 00:30:11,039 SO I TRIED MY OWN NONPROFIT AND 806 00:30:11,039 --> 00:30:12,073 THAT DIDN'T WORK BECAUSE I AM 807 00:30:12,073 --> 00:30:13,875 NOT A FUNDRAISER. 808 00:30:13,875 --> 00:30:14,876 I TRIED. 809 00:30:14,876 --> 00:30:16,745 WE DID GET SOME YOUNG PEOPLE 810 00:30:16,745 --> 00:30:19,014 INTO THE LAB AND WE NOW HAVE A 811 00:30:19,014 --> 00:30:23,385 MOUSE MODEL AND HAVE A BIOMARKER 812 00:30:23,385 --> 00:30:25,687 THAT WE WOULDN'T HAD WE NOT 813 00:30:25,687 --> 00:30:27,022 WORKED ON IT BUT IT WASN'T 814 00:30:27,022 --> 00:30:27,722 ENOUGH. 815 00:30:27,722 --> 00:30:30,225 THEN I WORKED WITH LYMPHATIC 816 00:30:30,225 --> 00:30:31,393 EDUCATIONAL RESEARCH NETWORK AND 817 00:30:31,393 --> 00:30:37,966 I WORKED ON THE REGISTRY AND I 818 00:30:37,966 --> 00:30:38,967 WAS SPECIAL PROJECTS DIRECTOR 819 00:30:38,967 --> 00:30:43,605 FOR A WHILE AND I HEARD ABOUT 820 00:30:43,605 --> 00:30:43,839 ARPA-H. 821 00:30:43,839 --> 00:30:46,508 IT TOOK ME TWO YEARS TO GET 822 00:30:46,508 --> 00:30:49,945 THROUGH THAT TO UNDERSTAND IT 823 00:30:49,945 --> 00:30:52,714 BUT I'M HERE NOW BECAUSE ARPA-H 824 00:30:52,714 --> 00:30:54,683 LISTENED AND I'M A PROGRAM 825 00:30:54,683 --> 00:30:56,852 MANAGER WITH TWO PROGRAMS. 826 00:30:56,852 --> 00:30:57,886 THE FIRST IS LIGHT. 827 00:30:57,886 --> 00:31:02,357 WE LAUNCHED THIS ONE AND WE ARE 828 00:31:02,357 --> 00:31:04,025 NOW IN A SOURCE SELECTION 829 00:31:04,025 --> 00:31:07,295 PROCESS EXPECTING OUR FULL 830 00:31:07,295 --> 00:31:09,231 PROPOSALS AND THAT'S LYMPHATIC 831 00:31:09,231 --> 00:31:11,299 IMAGING AND GENOTYPING AND 832 00:31:11,299 --> 00:31:12,767 PHENOTYPING TECHNOLOGY. 833 00:31:12,767 --> 00:31:16,271 HAVING MET WITH ALL KINDS OF 834 00:31:16,271 --> 00:31:16,938 STAKEHOLDERS ACROSS THE NATION 835 00:31:16,938 --> 00:31:20,375 AND INTERNATIONALLY WE CAME UP 836 00:31:20,375 --> 00:31:23,078 WITH THREE REAL CHALLENGES, 837 00:31:23,078 --> 00:31:25,480 BIOMARKERS, IMAGING, BEING 838 00:31:25,480 --> 00:31:29,851 HIGHLY INVASIVE, NOT VERY 839 00:31:29,851 --> 00:31:33,355 ACCESSIBLE AND HIGHLY 840 00:31:33,355 --> 00:31:33,655 SPECIALIZED. 841 00:31:33,655 --> 00:31:36,758 AND GENETICS. 842 00:31:36,758 --> 00:31:38,994 WE'RE YEARS BEHIND. 843 00:31:38,994 --> 00:31:41,229 SO WE'VE CREATED THREE FOCUS 844 00:31:41,229 --> 00:31:43,798 AREAS OR TECHNICAL AREAS. 845 00:31:43,798 --> 00:31:46,301 THE FIRST ONE IS DIAGNOSIS AND 846 00:31:46,301 --> 00:31:47,135 MONITORING THROUGH BIOMARKER 847 00:31:47,135 --> 00:31:47,435 DISCOVERY. 848 00:31:47,435 --> 00:31:49,838 THE SECOND IS IMAGING 849 00:31:49,838 --> 00:31:52,707 TECHNOLOGIES AND THE THIRD IS 850 00:31:52,707 --> 00:31:54,309 PREVENTION, PREDICTION AND 851 00:31:54,309 --> 00:31:56,177 DIAGNOSTIC CONFIRMATION THROUGH 852 00:31:56,177 --> 00:31:57,779 GENETICS AND EPIGENETICS AND 853 00:31:57,779 --> 00:32:00,682 MODELS OF LYMPHATIC DYSFUNCTION. 854 00:32:00,682 --> 00:32:02,317 NOW, AS I SAID WE'RE JUST IN THE 855 00:32:02,317 --> 00:32:04,753 MIDDLE OF OUR FULL PROPOSALS 856 00:32:04,753 --> 00:32:05,620 COMING IN. 857 00:32:05,620 --> 00:32:08,757 WE'RE REALLY LOOKING FORWARD TO 858 00:32:08,757 --> 00:32:17,832 SEE WHERE THAT TAKES US. 859 00:32:17,832 --> 00:32:20,535 THEN TOMORROW WE WILL BE HOLDING 860 00:32:20,535 --> 00:32:23,338 A PROPOSAL WHILE HEADING ON A 861 00:32:23,338 --> 00:32:26,041 PLANE TO NASHVILLE, TENNESSEE. 862 00:32:26,041 --> 00:32:29,811 OUR SECOND PROGRAM WAS LAUNCHED 863 00:32:29,811 --> 00:32:35,850 CALLED GROUNDBREAKING LYMPHATIC 864 00:32:35,850 --> 00:32:36,785 INTERVENTIONS AND DRUG 865 00:32:36,785 --> 00:32:40,755 EXPLORATION FOCUSSED ON 866 00:32:40,755 --> 00:32:42,390 THERAPEUTICS AND LAUNCHED 867 00:32:42,390 --> 00:32:44,759 TOGETHER A FEAT IN ITSELF AND 868 00:32:44,759 --> 00:32:49,197 CONVINCED LEADERSHIP IT WAS 869 00:32:49,197 --> 00:32:50,365 IMPORTANT TO HAVE TWO PROGRAMS 870 00:32:50,365 --> 00:32:52,968 DIAGNOSTICS AND THERAPEUTICS 871 00:32:52,968 --> 00:33:02,811 RUNNING IN PARALLEL SO OUR 872 00:33:02,811 --> 00:33:08,249 RESEARCHERS COULD INFORM EACH 873 00:33:08,249 --> 00:33:10,051 OTHER WITH COLLABORATION. 874 00:33:10,051 --> 00:33:11,987 IN THIS PROGRAM WE'RE GOING TO 875 00:33:11,987 --> 00:33:14,522 WORK ON TWO TECHNICAL AREAS. 876 00:33:14,522 --> 00:33:20,762 THE FIRST ONE IS PHYSICAL 877 00:33:20,762 --> 00:33:22,197 INTERVENTIONS. 878 00:33:22,197 --> 00:33:23,898 YOU, SURGERY, WEARABLES. 879 00:33:23,898 --> 00:33:28,503 WHAT WAYS CAN WE IMPROVE THE 880 00:33:28,503 --> 00:33:29,571 LYMPHATIC SYSTEM THROUGH 881 00:33:29,571 --> 00:33:31,473 PHYSICAL INTERVENTION AND THE 882 00:33:31,473 --> 00:33:34,542 SECOND IS NORMALIZING FUNCTION 883 00:33:34,542 --> 00:33:36,778 THROUGH PHARMACOLOGIC GENE AND 884 00:33:36,778 --> 00:33:38,546 CELL THERAPIES. 885 00:33:38,546 --> 00:33:43,718 WE ARE DOING OUR PROPOSALS TODAY 886 00:33:43,718 --> 00:33:45,353 AND TOMORROW AND WE'LL BE 887 00:33:45,353 --> 00:33:50,325 SELECTING OUR SOLUTION SUMMARIES 888 00:33:50,325 --> 00:33:55,163 SOON AFTER THAT. 889 00:33:55,163 --> 00:33:56,798 OKAY THIS IS WHAT I MEANT ABOUT 890 00:33:56,798 --> 00:34:00,835 COLLABORATION. 891 00:34:00,835 --> 00:34:04,339 WE'RE ASKING WHAT IF WE CAN MAKE 892 00:34:04,339 --> 00:34:08,777 THE INVISIBLE, VISIBLE? 893 00:34:08,777 --> 00:34:10,011 WHAT'S IT MEAN? 894 00:34:10,011 --> 00:34:13,982 WE WANT TO SHINE A LIGHT ON THE 895 00:34:13,982 --> 00:34:14,416 LYMPHATIC SYSTEM. 896 00:34:14,416 --> 00:34:16,451 IN GLIDE WE'RE TARGETING THE 897 00:34:16,451 --> 00:34:23,158 LYMPHATIC SYSTEM THROUGH FIZZ 898 00:34:23,158 --> 00:34:24,726 Y 899 00:34:24,726 --> 00:34:26,561 -- PHYSICAL INTERVENTIONS AND 900 00:34:26,561 --> 00:34:27,462 HOPING TO RUN THE PROGRAMS IN 901 00:34:27,462 --> 00:34:31,366 PARALLEL. 902 00:34:31,366 --> 00:34:36,771 BEFORE I GO ON TO THAT, EXCITED 903 00:34:36,771 --> 00:34:38,073 TO IT BE HERE BECAUSE AS 904 00:34:38,073 --> 00:34:43,445 DR. JENKINS MENTIONED, I EXPIRE 905 00:34:43,445 --> 00:34:48,283 IN THREE YEARS, HOPEFULLY SIX. 906 00:34:48,283 --> 00:34:49,984 THE PROGRAMS WILL END AND WE'LL 907 00:34:49,984 --> 00:34:52,554 NEED TO DERISK RESEARCH THAT'S 908 00:34:52,554 --> 00:34:56,024 REALLY IMPORTANT BUT HASN'T BEEN 909 00:34:56,024 --> 00:34:58,326 FUNDED YET AND TRANSITION IT 910 00:34:58,326 --> 00:34:58,593 OVER. 911 00:34:58,593 --> 00:35:00,295 HOW DO WE TRANSITION IT OVER? 912 00:35:00,295 --> 00:35:01,863 BY PARTNERS AND COLLABORATIVE 913 00:35:01,863 --> 00:35:03,364 EFFORTS AND NOT REINVENTING THE 914 00:35:03,364 --> 00:35:06,735 WHEEL. 915 00:35:06,735 --> 00:35:08,269 FINALLY JUST AS SMALLER PROGRAMS 916 00:35:08,269 --> 00:35:12,474 THAT WE'VE ALREADY STARTED TO 917 00:35:12,474 --> 00:35:14,275 FUND OR ARE IN THE PROCESS OF 918 00:35:14,275 --> 00:35:18,747 WORKING ON FUNDING, ONE WAS THE 919 00:35:18,747 --> 00:35:20,548 SPRINT FOR WOMEN'S HEALTH AND MY 920 00:35:20,548 --> 00:35:23,184 TEAM HAD THE OPPORTUNITY TO 921 00:35:23,184 --> 00:35:24,753 REPRESENT TOPIC NUMBER 4, WHICH 922 00:35:24,753 --> 00:35:32,794 WAS ADVANCING WOMEN'S BRAIN 923 00:35:32,794 --> 00:35:35,830 HEALTH THROUGH TARGETING THE 924 00:35:35,830 --> 00:35:36,564 LYMPHATIC SYSTEM AND DETERMINING 925 00:35:36,564 --> 00:35:41,569 WHO WILL BE AWARDED BUT I CAN 926 00:35:41,569 --> 00:35:42,537 LET YOU KNOW SOME TOPICS THAT 927 00:35:42,537 --> 00:35:45,273 CAME IN AND THE PROJECTS ARE 928 00:35:45,273 --> 00:35:46,908 FABULOUS AND WE'RE VERY EXCITED. 929 00:35:46,908 --> 00:35:50,645 WE HAVE DIAGNOSTICS AND 930 00:35:50,645 --> 00:35:51,212 THERAPEUTICS THAT WE'LL BE 931 00:35:51,212 --> 00:35:55,183 WORKING ON. 932 00:35:55,183 --> 00:35:57,385 WE ALSO HAVE SMALLER BUSINESS 933 00:35:57,385 --> 00:36:01,523 OPPORTUNITIES AND I REMEMBER 934 00:36:01,523 --> 00:36:04,759 LAST TIME I JUMPED IN AND STAN 935 00:36:04,759 --> 00:36:05,994 WAS ABLE TO HELP OUT. 936 00:36:05,994 --> 00:36:10,465 WE HAVE AN AMBULATORY EDEMA 937 00:36:10,465 --> 00:36:11,800 MONITOR SOLICITED FOR AND IN THE 938 00:36:11,800 --> 00:36:16,237 MIDDLE OF SOURCE SELECTION. 939 00:36:16,237 --> 00:36:17,772 WE HAD GREAT TOPICS AND 940 00:36:17,772 --> 00:36:21,743 HOPEFULLY ANNOUNCING THOSE SOON. 941 00:36:21,743 --> 00:36:24,145 I CAN ANNOUNCE THIS ONE. 942 00:36:24,145 --> 00:36:28,783 WE HAVE TWO AWARDEES FOR OUR 943 00:36:28,783 --> 00:36:30,885 SMALL BUSINESS TOPIC CALLED 944 00:36:30,885 --> 00:36:32,220 LYMPHOLAB PRODISCOVERY KIT. 945 00:36:32,220 --> 00:36:42,764 WE JUST HAVE BEEN ABLE TO AWARD 946 00:36:44,666 --> 00:36:48,770 TWO TEAMS ONE FROM HAWAI'I 947 00:36:48,770 --> 00:36:52,473 WORKING ON A STANDARDIZED 948 00:36:52,473 --> 00:36:54,209 STANDARDIZED METHOD TO IMPROVE 949 00:36:54,209 --> 00:36:56,477 THE ABILITY TO UNDERSTAND 950 00:36:56,477 --> 00:36:57,378 LYMPHATIC STRUCTURE AND FUNCTION 951 00:36:57,378 --> 00:37:02,283 THROUGH MODELS. 952 00:37:02,283 --> 00:37:08,122 WE HOPE THOSE WILL BE AVAILABLE 953 00:37:08,122 --> 00:37:10,191 SO THERE'S A STANDARD TO WORK ON 954 00:37:10,191 --> 00:37:12,760 THE STANDARD AND FUNCTION AND 955 00:37:12,760 --> 00:37:15,163 DRUG REPURPOSING. 956 00:37:15,163 --> 00:37:19,567 AND THAT OPPORTUNITY ALLOWED FOR 957 00:37:19,567 --> 00:37:28,376 $8 MILLION IN FUNDING. 958 00:37:28,376 --> 00:37:30,445 TO SHOW THE BREADTH WE'RE TRYING 959 00:37:30,445 --> 00:37:32,780 TO COVER AND I'VE HAD THE 960 00:37:32,780 --> 00:37:39,387 OPPORTUNITY IN LESS THAN A YEAR 961 00:37:39,387 --> 00:37:40,388 THIS SHOWS OUR DIFFERENT 962 00:37:40,388 --> 00:37:42,590 PORTFOLIO TOPIC AREAS. 963 00:37:42,590 --> 00:37:45,226 WE SPRINT FOR WOMEN'S HEALTH, 964 00:37:45,226 --> 00:37:48,763 OUR PROGRAM WHICH ARE THE MAIN 965 00:37:48,763 --> 00:37:52,133 BRAMS LIKE DIAGNOSTICS AND IN 966 00:37:52,133 --> 00:37:53,201 THERAPEUTICS, OUR SMALL BUSINESS 967 00:37:53,201 --> 00:37:56,771 TOPICS AND THEN ALL OF THE 968 00:37:56,771 --> 00:37:58,606 DIFFERENT LYMPHATIC HEALTH 969 00:37:58,606 --> 00:37:59,974 INTEREST AREAS WE'RE TRYING TO 970 00:37:59,974 --> 00:38:00,174 COVER. 971 00:38:00,174 --> 00:38:02,343 YOU CAN SEE WE'RE TRYING TO FILL 972 00:38:02,343 --> 00:38:04,946 IN THE SPACES AND I'D SAY WE'RE 973 00:38:04,946 --> 00:38:12,220 NOT DOING NOT BAD JOBS SO FAR. 974 00:38:12,220 --> 00:38:16,424 YOU'LL SEE WHAT WE'RE WORKING ON 975 00:38:16,424 --> 00:38:20,762 IS ADDRESSING THE BARRIERS OF 976 00:38:20,762 --> 00:38:21,262 LYMPHATIC DIAGNOSIS AND 977 00:38:21,262 --> 00:38:26,267 TREATMENT. 978 00:38:26,267 --> 00:38:28,469 ARPA-H IS INVESTED IN 979 00:38:28,469 --> 00:38:29,337 ACCESSIBILITY AND AFFORDABILITY 980 00:38:29,337 --> 00:38:32,340 AND INCLUSIVITY. 981 00:38:32,340 --> 00:38:34,375 PART OF THE PROGRAMS LIGHT AND 982 00:38:34,375 --> 00:38:35,710 GLIDE INCLUDE DISCOVERY DUO 983 00:38:35,710 --> 00:38:36,177 PROGRAM. 984 00:38:36,177 --> 00:38:38,713 WHAT'S THAT LOOK LIKE? 985 00:38:38,713 --> 00:38:43,117 THAT MEANS EACH TEAM HAS BEEN 986 00:38:43,117 --> 00:38:46,854 ASKED TO IDENTIFY AN EARLY 987 00:38:46,854 --> 00:38:48,723 INVESTIGATOR FROM AN UNDER 988 00:38:48,723 --> 00:38:51,359 REPRESENTED AREA AND ALSO A 989 00:38:51,359 --> 00:38:56,397 PATIENT OR CAREGIVER AMBASSADOR. 990 00:38:56,397 --> 00:38:57,398 TOGETHER THAT TEAM WILL 991 00:38:57,398 --> 00:38:59,300 REPRESENT THE BIG TEAM AND PART 992 00:38:59,300 --> 00:39:01,803 OF AN ACCESSIBILITY TASK FORCE 993 00:39:01,803 --> 00:39:03,371 SIMILAR TO HOW YOU'RE WORKING ON 994 00:39:03,371 --> 00:39:07,542 COMMITTEES TOO. 995 00:39:07,542 --> 00:39:10,611 THE DISCOVERY DUO TEAM WILL BE 996 00:39:10,611 --> 00:39:12,246 TASKED WITH DOING PATIENT VOICE 997 00:39:12,246 --> 00:39:17,051 SECTIONS WITH RURAL AREAS, 998 00:39:17,051 --> 00:39:18,052 ADMINISTRATORS, EVEN TALK TO ALL 999 00:39:18,052 --> 00:39:18,987 OF YOU TOO. 1000 00:39:18,987 --> 00:39:20,688 THE IDEA IS THEY'RE GOING TO 1001 00:39:20,688 --> 00:39:22,790 COME BACK AND WE'RE ALL GOING TO 1002 00:39:22,790 --> 00:39:25,526 WORK AS A TEAM AGAIN LIGHT AND 1003 00:39:25,526 --> 00:39:31,265 GLIDE TOGETHER, ALL THE 1004 00:39:31,265 --> 00:39:34,535 PERFORMERS TOGETHER AND WORK ON 1005 00:39:34,535 --> 00:39:35,603 KEY PERFORMANCE EDUCATORS A 1006 00:39:35,603 --> 00:39:36,771 STRATEGIC ROAD MAP HOW WE GET 1007 00:39:36,771 --> 00:39:39,073 THE TECHNOLOGIES TO NOT SIT ON A 1008 00:39:39,073 --> 00:39:46,614 SHELF BUT BE USED ONE DAY. 1009 00:39:46,614 --> 00:39:48,082 THAT'S ALL I HAVE. 1010 00:39:48,082 --> 00:39:49,717 >> THANK YOU SO MUCH TO BOTH OF 1011 00:39:49,717 --> 00:39:50,018 YOU. 1012 00:39:50,018 --> 00:39:52,587 AGAIN WE'LL HAVE A PANEL 1013 00:39:52,587 --> 00:39:54,555 DISCUSSION AT THE END AND LOOK 1014 00:39:54,555 --> 00:39:56,090 FORWARD TOO A VIBRANT Q&A. 1015 00:39:56,090 --> 00:39:58,593 THE NEXT SPEAKER IS DR. MICHELLE 1016 00:39:58,593 --> 00:40:01,496 WASHKO THE DIRECTOR FOR NATIONAL 1017 00:40:01,496 --> 00:40:06,401 CENTER FOR HEALTH RESOURCES AND 1018 00:40:06,401 --> 00:40:07,335 SERVICES ADMINISTRATION. 1019 00:40:07,335 --> 00:40:07,735 >> GOOD MORNING. 1020 00:40:07,735 --> 00:40:12,106 I'M PLEASED TO BE HERE TODAY. 1021 00:40:12,106 --> 00:40:17,678 I'M DR. WASHKO FOR THE DIRECTOR 1022 00:40:17,678 --> 00:40:18,746 FOR WORKFORCE ANALYSIS IN THE 1023 00:40:18,746 --> 00:40:21,382 HEALTH RESOURCES AND SERVICES 1024 00:40:21,382 --> 00:40:22,050 ADMINISTRATION IN HHS. 1025 00:40:22,050 --> 00:40:26,054 THE MISSION IS TO IMPROVE HEALTH 1026 00:40:26,054 --> 00:40:27,355 OUTCOMES AND ACHIEVE HEALTH 1027 00:40:27,355 --> 00:40:30,792 EQUITY THROUGH ACCESS TO QUALITY 1028 00:40:30,792 --> 00:40:32,060 SERVICES, A SKILLED HEALTH 1029 00:40:32,060 --> 00:40:34,695 WORKFORCE AND INNOVATIVE HIGH 1030 00:40:34,695 --> 00:40:35,296 VALUE PROGRAMS. 1031 00:40:35,296 --> 00:40:36,898 MY AREAS OF EXPERTISE FOCUSES ON 1032 00:40:36,898 --> 00:40:38,232 THE HEALTH WORKFORCE. 1033 00:40:38,232 --> 00:40:39,901 THOSE WOULD RESEARCH AND TREAT 1034 00:40:39,901 --> 00:40:41,803 LYMPHATIC DISEASES. 1035 00:40:41,803 --> 00:40:47,175 TO THAT END, HRSA LOOKS TO GROW 1036 00:40:47,175 --> 00:40:48,776 THE HEALTH WORKFORCE IN THE 1037 00:40:48,776 --> 00:40:50,678 U.S. AND WHERE MY RESEARCH 1038 00:40:50,678 --> 00:40:53,314 CENTER SITS ADMINISTERS GRAND 1039 00:40:53,314 --> 00:40:54,549 LOAN AND SCHOLARSHIP PROGRAMS TO 1040 00:40:54,549 --> 00:40:56,617 THIS EFFECT. 1041 00:40:56,617 --> 00:41:00,054 WE USE OUR $2 BILLION ANNUAL 1042 00:41:00,054 --> 00:41:02,056 APPROPRIATION TO FUND EDUCATION 1043 00:41:02,056 --> 00:41:03,357 AND TRAINING PROGRAMS AT 1044 00:41:03,357 --> 00:41:04,459 UNIVERSITIES AROUND THE COUNTRY 1045 00:41:04,459 --> 00:41:06,427 THAT CREATE THE NEXT GENERATION 1046 00:41:06,427 --> 00:41:07,895 OF HEALTH CARE WORKERS. 1047 00:41:07,895 --> 00:41:10,832 WE USE THOSE GRANT PROGRAMS TO 1048 00:41:10,832 --> 00:41:15,369 FUND CONTINUING EDUCATION FOR 1049 00:41:15,369 --> 00:41:19,640 EXISTING HEALTH CARE WORKERS AND 1050 00:41:19,640 --> 00:41:20,775 ALSO SUPPORT COMMUNITY BASED 1051 00:41:20,775 --> 00:41:24,779 TRAINING AND ENCOURAGE CLINICIAN 1052 00:41:24,779 --> 00:41:28,516 TO WORK IN HIGH NEED AREAS. 1053 00:41:28,516 --> 00:41:30,685 MY REMARKS WILL HELP SET CONTEXT 1054 00:41:30,685 --> 00:41:34,589 AS TO WHY WE DO WHAT WE DO. 1055 00:41:34,589 --> 00:41:35,456 HIGH QUALITY HEALTH CARE STARTS 1056 00:41:35,456 --> 00:41:38,826 WITH A WELL-TRAINED ADEQUATELY 1057 00:41:38,826 --> 00:41:41,262 SUPPLIED AND DISTRIBUTED 1058 00:41:41,262 --> 00:41:42,130 WORKFORCE THUS OUR PROGRAM'S 1059 00:41:42,130 --> 00:41:42,730 AIMS TO DO THAT IN THE UNITED 1060 00:41:42,730 --> 00:41:52,874 STATES. 1061 00:41:53,908 --> 00:41:56,377 THERE ARE SEVERAL CHALLENGES IN 1062 00:41:56,377 --> 00:41:58,613 WORKFORCE SHORTAGES, 1063 00:41:58,613 --> 00:42:01,249 MALDISTRIBUTION AND UNEQUAL 1064 00:42:01,249 --> 00:42:03,351 ACCESS TO CARE AND EMPLOYMENT 1065 00:42:03,351 --> 00:42:04,519 QUALITY IN THE SECTOR. 1066 00:42:04,519 --> 00:42:07,088 THERE ARE PEOPLE ATTEMPTING TO 1067 00:42:07,088 --> 00:42:07,989 COMBAT THESE ISSUES. 1068 00:42:07,989 --> 00:42:10,024 DELVING DEEPER. 1069 00:42:10,024 --> 00:42:12,193 FIRST, THE SHORTAGES YOU CAN SEE 1070 00:42:12,193 --> 00:42:14,362 ARE IN MANY MANY OCCUPATIONS. 1071 00:42:14,362 --> 00:42:20,468 MY CENTER RELEASES WORKFORCE 1072 00:42:20,468 --> 00:42:21,102 PROJECTIONS ANNUALLY AND GETTING 1073 00:42:21,102 --> 00:42:22,270 STEADILY WORSE. 1074 00:42:22,270 --> 00:42:23,838 WE NEED TO BALANCE OUR SUPPLY 1075 00:42:23,838 --> 00:42:24,839 WITH DEMAND FOR CARE BY 1076 00:42:24,839 --> 00:42:26,607 EXPANDING THE NUMBER OF 1077 00:42:26,607 --> 00:42:29,911 INDIVIDUALS WHO WORK IN HEALTH 1078 00:42:29,911 --> 00:42:30,278 CARE. 1079 00:42:30,278 --> 00:42:34,148 SECOND, WHAT WE MAY PERCEIVE AS 1080 00:42:34,148 --> 00:42:35,883 SHORTAGES IN SMALLER GEOGRAPHIC 1081 00:42:35,883 --> 00:42:38,352 AREAS AND STATES, YOU ARAN 1082 00:42:38,352 --> 00:42:39,520 VERSUS RURAL COUNTIES AND THINGS 1083 00:42:39,520 --> 00:42:41,923 LIKE THAT THERE'S OFTEN THE 1084 00:42:41,923 --> 00:42:43,291 RESULT OF MALDISTRIBUTION ON A 1085 00:42:43,291 --> 00:42:45,359 TRUE SHORT AND. 1086 00:42:45,359 --> 00:42:46,861 WE NEED TO IMPROVE WORKFORCE 1087 00:42:46,861 --> 00:42:50,064 DISTRIBUTION BY ENCOURAGING 1088 00:42:50,064 --> 00:42:51,732 TRAINING AND THIS IS SOMETHING 1089 00:42:51,732 --> 00:42:56,437 THE PROGRAM ADMINISTER DO. 1090 00:42:56,437 --> 00:42:57,939 THIRD AND ACCESS TO CARE IS A 1091 00:42:57,939 --> 00:42:59,707 MUTHE PROBLEM IN THE COUNTRY. 1092 00:42:59,707 --> 00:43:02,210 WE NEED TO INCREASE AND IMPROVE 1093 00:43:02,210 --> 00:43:04,278 ACCESS TO MAKE IT EASIER FOR 1094 00:43:04,278 --> 00:43:05,313 PEOPLE TO GET THE HEALTH CARE 1095 00:43:05,313 --> 00:43:07,148 THEY NEED AND LABOR MARKET 1096 00:43:07,148 --> 00:43:08,749 FACTORS AND EMPLOYMENT 1097 00:43:08,749 --> 00:43:11,319 CHARACTERISTIC CAN DRIVE PEOPLE 1098 00:43:11,319 --> 00:43:11,953 OUT OF THE HEALTH CARE SECTOR 1099 00:43:11,953 --> 00:43:14,222 AND NEED TO IMPROVE THE QUALITY 1100 00:43:14,222 --> 00:43:16,757 OF EMPLOYMENT AND ADDRESS UNDER 1101 00:43:16,757 --> 00:43:17,625 COMPENSATION AND BURN OUT AND 1102 00:43:17,625 --> 00:43:22,730 WORKPLACE VIOLENCE. 1103 00:43:22,730 --> 00:43:24,765 TO GIVE A LITTLE BIT OF A FLAVOR 1104 00:43:24,765 --> 00:43:27,368 OF WHY WE'RE APPROPRIATED BY 1105 00:43:27,368 --> 00:43:30,938 CONGRESS TO FUND THESE GRANT, 1106 00:43:30,938 --> 00:43:32,373 LOAN AND SCHOLARSHIP PROGRAMS. 1107 00:43:32,373 --> 00:43:34,575 THESE ARE SHORTAGES AND THE 1108 00:43:34,575 --> 00:43:36,978 PROJECTION NUMBERS WE RELEASE ON 1109 00:43:36,978 --> 00:43:40,548 AN ANNUAL BASIS AND ABOUT TO 1110 00:43:40,548 --> 00:43:41,749 RELEASE NEW ONES AND UPDATE THEM 1111 00:43:41,749 --> 00:43:43,651 EVERY YEAR. 1112 00:43:43,651 --> 00:43:48,689 WE'RE LOOKING AT 30 OUT OF 35 1113 00:43:48,689 --> 00:43:56,764 SPECIALTIES PROJECTING TO HAVE A 1114 00:43:56,764 --> 00:44:05,673 SHORTAGE SOME OF THE WORSE WHERE 1115 00:44:05,673 --> 00:44:08,342 IN THIS CARE AND GERIATRICIANS 1116 00:44:08,342 --> 00:44:10,411 WILL CONTINUE TO EXPERIENCE SOME 1117 00:44:10,411 --> 00:44:12,713 THEREOF WORSE. 1118 00:44:12,713 --> 00:44:13,214 REGISTERED NURSES WE'RE 1119 00:44:13,214 --> 00:44:18,119 PROJECTING A 9% SHORTAGE BY 1120 00:44:18,119 --> 00:44:18,319 2026. 1121 00:44:18,319 --> 00:44:21,188 SO LESS OF A SHORT AND BUT IT 1122 00:44:21,188 --> 00:44:23,190 WILL CONTINUE AND SAME IN 9 OF 1123 00:44:23,190 --> 00:44:26,294 THE BEHAVIORAL HEALTH 1124 00:44:26,294 --> 00:44:26,927 OCCUPATIONS, PSYCHIATRISTS AND 1125 00:44:26,927 --> 00:44:31,299 OTHERS. 1126 00:44:31,299 --> 00:44:34,101 ANOTHER MAJOR CHALLENGE IS 1127 00:44:34,101 --> 00:44:34,635 DISTRIBUTION. 1128 00:44:34,635 --> 00:44:36,771 SOMETIMES WE MAY HAVE AN 1129 00:44:36,771 --> 00:44:38,572 APPLICATION WHICH APPEARS TO BE 1130 00:44:38,572 --> 00:44:39,340 AN EQUILIBRIUM AT THE NATIONAL 1131 00:44:39,340 --> 00:44:42,176 LEVEL BUT LOOKING AT THE SMALLER 1132 00:44:42,176 --> 00:44:43,010 GEOGRAPHIES THE MALDISTRIBUTION 1133 00:44:43,010 --> 00:44:47,548 LOOKS LIKE A SHORTAGE. 1134 00:44:47,548 --> 00:44:50,851 THAT SHORTAGE OF REGISTERED 1135 00:44:50,851 --> 00:44:52,453 NURSES EXAMPLE LOOK AT WHAT 1136 00:44:52,453 --> 00:44:55,556 WE'LL HAVE BY STATE IN 2036, 15 1137 00:44:55,556 --> 00:44:58,559 YEARS OUT YOU'LL SEE SOME OF THE 1138 00:44:58,559 --> 00:45:02,029 STATES IN DARK BLUE ARE 1139 00:45:02,029 --> 00:45:02,897 COMPLETELY ADEQUATE AN 1140 00:45:02,897 --> 00:45:05,499 OVERSUPPLY BUT THOSE IN DARK RED 1141 00:45:05,499 --> 00:45:08,636 WILL BE EXPERIENCING DIRE 1142 00:45:08,636 --> 00:45:08,936 SHORTAGES. 1143 00:45:08,936 --> 00:45:11,639 IT'S NOT THAT THE SHORTAGE OR 1144 00:45:11,639 --> 00:45:13,874 RATHER THE DISTRIBUTION IS EVEN 1145 00:45:13,874 --> 00:45:15,810 ACROSS THE STATES. 1146 00:45:15,810 --> 00:45:19,447 WE CAN EVEN IT OUT THE SHORTAGES 1147 00:45:19,447 --> 00:45:21,082 COULD BE MITIGATED. 1148 00:45:21,082 --> 00:45:23,584 THE THIRD THING WERE ACCESS 1149 00:45:23,584 --> 00:45:23,951 DIFFICULTIES. 1150 00:45:23,951 --> 00:45:28,489 AND THIS IS A GOOD EXAMPLE OF 1151 00:45:28,489 --> 00:45:30,891 WHAT THAT MEANS SHORTAGES CAN BE 1152 00:45:30,891 --> 00:45:33,127 FELT ACUTELY DEPENDING ON WHERE 1153 00:45:33,127 --> 00:45:33,694 SOMEONE LIVES. 1154 00:45:33,694 --> 00:45:36,931 THE EXAMPLE IS THE OUTLOOK FOR 1155 00:45:36,931 --> 00:45:39,166 WOMEN'S HEALTH SERVICE. 1156 00:45:39,166 --> 00:45:41,068 RIGHT NOW THEY'RE SEVERELY 1157 00:45:41,068 --> 00:45:42,670 HAMPERED DUE TO LACK OF ACCESS 1158 00:45:42,670 --> 00:45:43,938 TO PROVIDERS IN THE U.S. 1159 00:45:43,938 --> 00:45:48,809 WE'RE PROJECTING A 13% SHORTAGE 1160 00:45:48,809 --> 00:45:50,611 BY 2026 AND THE SHORTAGE IS 1161 00:45:50,611 --> 00:45:52,780 GOING TO JUMP TO 18%. 1162 00:45:52,780 --> 00:45:55,082 IT'S GETTING WORSE YEAR BY YEAR. 1163 00:45:55,082 --> 00:46:00,755 AS OF 2022, THIS IS TWO YEARS 1164 00:46:00,755 --> 00:46:02,623 AGO ALMOST 13% OF WOMEN OVER 18 1165 00:46:02,623 --> 00:46:08,195 LIVE IN COUNTIES WITH NO OB-GYN 1166 00:46:08,195 --> 00:46:08,863 PHYSICIANS. 1167 00:46:08,863 --> 00:46:10,498 NOT DIRECTLY RELATED TO 1168 00:46:10,498 --> 00:46:11,399 LYMPHATIC CARE AND DISEASE BUT 1169 00:46:11,399 --> 00:46:13,734 GIVES A SENSE OF WHERE WE ARE. 1170 00:46:13,734 --> 00:46:16,771 COUPLED WITH PRIMARY CARE 1171 00:46:16,771 --> 00:46:18,339 PROVIDER SHORTAGES THESE ARE 1172 00:46:18,339 --> 00:46:22,176 LACKING IN MANY PARTS OF THE 1173 00:46:22,176 --> 00:46:23,210 COUNTRY BECAUSE PRIMARY CARE 1174 00:46:23,210 --> 00:46:26,647 PROVIDERS ARE OFTEN PICKING UP 1175 00:46:26,647 --> 00:46:29,650 FOR OB-GYNs AND THIS HAPPENS 1176 00:46:29,650 --> 00:46:30,951 WHEN INDIVIDUALS ARE ABLE TO 1177 00:46:30,951 --> 00:46:33,387 WORK TO THE TOP OF THEIR 1178 00:46:33,387 --> 00:46:37,992 SCHEDULED PRACTICE OR ONE 1179 00:46:37,992 --> 00:46:40,194 PARTICULAR SPECIALTY GOES TO THE 1180 00:46:40,194 --> 00:46:40,761 NEXT. 1181 00:46:40,761 --> 00:46:44,899 THE LAST MAJOR CHALLENGE WAS 1182 00:46:44,899 --> 00:46:46,734 UNEVEN QUALITY IN THE U.S. 1183 00:46:46,734 --> 00:46:50,070 AND NOT ONLY THE QUALITY OF THE 1184 00:46:50,070 --> 00:46:53,307 WORKFORCE VIA TRAINING AND 1185 00:46:53,307 --> 00:46:56,210 EDUCATION BUT QUALITY OF 1186 00:46:56,210 --> 00:46:56,844 EMPLOYMENT CONDITIONS FOR HEALTH 1187 00:46:56,844 --> 00:46:57,178 CARE WORKERS. 1188 00:46:57,178 --> 00:46:58,646 A GREAT EXAMPLE ARE PRIMARY CARE 1189 00:46:58,646 --> 00:47:00,014 PHYSICIANS AGAIN. 1190 00:47:00,014 --> 00:47:01,115 THEY HAVE LOWER WAGES COMPARED 1191 00:47:01,115 --> 00:47:02,116 TO SPECIALTIES. 1192 00:47:02,116 --> 00:47:05,920 IT LEADS TO MANY MEDICAL SCHOOL 1193 00:47:05,920 --> 00:47:07,521 GRADUATES CHOOSING OTHER 1194 00:47:07,521 --> 00:47:13,060 EXPERIMENTS WHICH MEANS 1195 00:47:13,060 --> 00:47:14,428 PERSISTENT SHORTAGES AND WE ONLY 1196 00:47:14,428 --> 00:47:16,297 HAVE TWO GEOGRAPHIC LOCATIONS 1197 00:47:16,297 --> 00:47:18,399 AND STATES THAT WON'T BE IN 1198 00:47:18,399 --> 00:47:19,467 SHORTAGE OF PRIMARY CARE 1199 00:47:19,467 --> 00:47:24,572 PHYSICIANS IN THE NEXT 15 YEARS. 1200 00:47:24,572 --> 00:47:25,606 IMPROVED LABOR MARKET AND 1201 00:47:25,606 --> 00:47:27,374 EMPLOYMENT CONDITIONS ARE 1202 00:47:27,374 --> 00:47:32,947 CRITICAL PART OF THIS SOLUTION. 1203 00:47:32,947 --> 00:47:34,648 JUST BRIEFLY IN THE INTEREST OF 1204 00:47:34,648 --> 00:47:36,784 TIME, IT IS ONE THING OF COURSE 1205 00:47:36,784 --> 00:47:39,386 TO IDENTIFY THE CHALLENGES AND 1206 00:47:39,386 --> 00:47:40,754 TO UNDERSTAND HOW TO PROPERLY 1207 00:47:40,754 --> 00:47:42,823 ADDRESS AND IDENTIFY WHERE WITH 1208 00:47:42,823 --> 00:47:43,557 WE SEE SUCCESS AND UNDERSTAND 1209 00:47:43,557 --> 00:47:47,127 THE UNDERLYING CAUSES AND AGAIN 1210 00:47:47,127 --> 00:47:48,762 OUR PROGRAMS ATTEMPT TO MOVE THE 1211 00:47:48,762 --> 00:47:52,900 DIAL BY IMPACTING THE WORKFORCE. 1212 00:47:52,900 --> 00:47:54,468 UNFORTUNATELY, THOSE ARE TWO 1213 00:47:54,468 --> 00:47:56,871 MAJOR DRIVERS WHERE OUR FUNDING 1214 00:47:56,871 --> 00:47:57,605 CAN'T IMPACT. 1215 00:47:57,605 --> 00:47:58,839 SO THESE AREN'T THE ONLY ONES OF 1216 00:47:58,839 --> 00:48:01,008 COURSE BUT THIS IS MANY COULD GO 1217 00:48:01,008 --> 00:48:02,309 FROM A WORKFORCE. 1218 00:48:02,309 --> 00:48:03,377 FIRST THERE ARE MAJOR 1219 00:48:03,377 --> 00:48:04,945 POPULATIONS AFOOT IN THE 1220 00:48:04,945 --> 00:48:09,917 U.S. FOR SEVERAL GENERATIONS AND 1221 00:48:09,917 --> 00:48:12,753 THERE ARE FACTORS THAT PLAY A 1222 00:48:12,753 --> 00:48:17,558 ROLE AS A PROBLEM AND STLUGS. 1223 00:48:17,558 --> 00:48:18,058 -- SOLUTION. 1224 00:48:18,058 --> 00:48:19,493 THE POPULATION SHIFTS ARE THE 1225 00:48:19,493 --> 00:48:20,461 AGING OF THE POPULATION. 1226 00:48:20,461 --> 00:48:23,030 OUR AGING SOCIETY IS STILL THE 1227 00:48:23,030 --> 00:48:24,532 PRIMARY DRIVER FOR DEMAND GROWTH 1228 00:48:24,532 --> 00:48:25,266 IN HEALTH CARE. 1229 00:48:25,266 --> 00:48:27,034 WE HAVE ABOUT 17% OF THE 1230 00:48:27,034 --> 00:48:28,569 U.S. POPULATION OVER THE AGE OF 1231 00:48:28,569 --> 00:48:28,802 65. 1232 00:48:28,802 --> 00:48:31,639 BY 2050 THIS IS GOING TO JUMP TO 1233 00:48:31,639 --> 00:48:34,141 AROUND 23%. 1234 00:48:34,141 --> 00:48:36,343 THESE WILL BE COMPETING IN THE 1235 00:48:36,343 --> 00:48:36,610 WORKFORCE. 1236 00:48:36,610 --> 00:48:38,045 WE HAVE ATTRITION FROM THE 1237 00:48:38,045 --> 00:48:39,246 WORKFORCE WHILE DEMAND IS 1238 00:48:39,246 --> 00:48:39,547 INCREASING. 1239 00:48:39,547 --> 00:48:42,016 AT THE SAME TIME, U.S. BIRTH 1240 00:48:42,016 --> 00:48:46,153 RATE HAS FALLEN BY 20% SINCE 1241 00:48:46,153 --> 00:48:50,391 2007 AND INTERNATIONAL MIGRATION 1242 00:48:50,391 --> 00:48:52,626 ARE LOWEST AND CONTRIBUTE TO THE 1243 00:48:52,626 --> 00:48:54,628 LABOR SHORT AND AND INABILITY OF 1244 00:48:54,628 --> 00:48:56,463 THE HEALTH WORKFORCE TO MEET THE 1245 00:48:56,463 --> 00:49:00,601 GROWING HEALTH CARE DEMANDS 1246 00:49:00,601 --> 00:49:02,202 REQUIRED BY OUR POPULATION. 1247 00:49:02,202 --> 00:49:06,173 AND SECOND I MENTIONED LATE 1248 00:49:06,173 --> 00:49:09,376 LARGE LABOR MARKET FACTOR AND 1249 00:49:09,376 --> 00:49:10,678 CHALLENGES FACING ANYONE 1250 00:49:10,678 --> 00:49:12,346 ENTERING HEALTH CARE RESEARCH OR 1251 00:49:12,346 --> 00:49:13,180 WORKFORCE. 1252 00:49:13,180 --> 00:49:15,382 THERE'S ISSUES WITH EDUCATIONAL 1253 00:49:15,382 --> 00:49:17,451 PIPELINE FOR WORKERS AND NOT 1254 00:49:17,451 --> 00:49:20,387 ONLY SHORTAGES OF NURSES BUT 1255 00:49:20,387 --> 00:49:21,555 NURSING FACULTY WHO TRAIN THE 1256 00:49:21,555 --> 00:49:23,991 NURSES IN THE COUNTRY. 1257 00:49:23,991 --> 00:49:27,361 THIS MEANS LESS PEOPLE ARE ABLE 1258 00:49:27,361 --> 00:49:29,730 TO BE TRAINED AND LESS WORKERS 1259 00:49:29,730 --> 00:49:30,531 IN THE SUPPLY IN THE ANNUAL 1260 00:49:30,531 --> 00:49:32,833 BASIS. 1261 00:49:32,833 --> 00:49:34,735 UNDER COMPENSATION IS ALSO AN 1262 00:49:34,735 --> 00:49:39,373 ISSUE AND I MENTIONED PRIMARY 1263 00:49:39,373 --> 00:49:42,543 CARE AND THE DIRECT CARE 1264 00:49:42,543 --> 00:49:42,776 WORKERS. 1265 00:49:42,776 --> 00:49:46,447 IN THE LATTER CASE EASY ENTRY 1266 00:49:46,447 --> 00:49:48,749 APPLICATIONS CAN GET SIPHONED TO 1267 00:49:48,749 --> 00:49:50,084 OTHER INDUSTRIES. 1268 00:49:50,084 --> 00:49:51,652 THEY DON'T EVEN ENTER HEALTH 1269 00:49:51,652 --> 00:49:53,053 CARE OR DO AND IMMEDIATELY 1270 00:49:53,053 --> 00:49:57,758 LEAVE. 1271 00:49:57,758 --> 00:50:00,294 POOR WORKING ENVIRONMENT WITH 1272 00:50:00,294 --> 00:50:02,029 BURNOUT AND STRESS AND COVID-19 1273 00:50:02,029 --> 00:50:04,765 EXACERBATED THAT WHEN THERE WAS 1274 00:50:04,765 --> 00:50:08,035 LONG HOURS AND EXHAUSTION AND 1275 00:50:08,035 --> 00:50:09,370 EXPOSURE TO DEATH AND SUFFERING 1276 00:50:09,370 --> 00:50:11,205 AND PATIENT SAFETY. 1277 00:50:11,205 --> 00:50:13,440 AND OUR PROGRAMS DON'T TOUCH 1278 00:50:13,440 --> 00:50:15,476 DIRECTLY ON IMPACTING THESE 1279 00:50:15,476 --> 00:50:17,344 LARGE SOCIETAL ISSUES BUT DO 1280 00:50:17,344 --> 00:50:19,847 ATTEMPT TO PREPARE CLINICIANS TO 1281 00:50:19,847 --> 00:50:25,252 DEAL WITH THEM AND OTHER 1282 00:50:25,252 --> 00:50:25,953 PROFESSIONALS. 1283 00:50:25,953 --> 00:50:29,957 DESPITE ALL THESE CHALLENGES, I 1284 00:50:29,957 --> 00:50:32,559 KNOW I'M PAINT DIRE PICTURE BUT 1285 00:50:32,559 --> 00:50:33,360 THERE ARE SOLUTIONS WITHIN OUR 1286 00:50:33,360 --> 00:50:33,594 REACH. 1287 00:50:33,594 --> 00:50:36,196 WHILE WE CAN'T CHANGE THE 1288 00:50:36,196 --> 00:50:37,364 POPULATION DRIVERS WE CAN 1289 00:50:37,364 --> 00:50:39,066 PRODUCE MORE PROVIDERS TO GROW 1290 00:50:39,066 --> 00:50:40,467 THE NUMBER OF STUDENTS ENTERING 1291 00:50:40,467 --> 00:50:41,468 HEALTH CARE AND GRADUATING. 1292 00:50:41,468 --> 00:50:43,604 WHEN IT COMES TO DISTRIBUTION 1293 00:50:43,604 --> 00:50:46,707 AND AGAIN THIS IS SOMETHING OUR 1294 00:50:46,707 --> 00:50:48,776 SCHOLAR PROGRAM PROGRAMS DO 1295 00:50:48,776 --> 00:50:51,645 TOUCH ON THE CORPS BEING THE BIG 1296 00:50:51,645 --> 00:50:54,481 ONE AND ENCOURAGE THOSE TO 1297 00:50:54,481 --> 00:50:56,417 ENROLL IN UNDER SERVED AREAS 1298 00:50:56,417 --> 00:50:58,619 WITH LOAN REPAYMENT PROGRAMS WE 1299 00:50:58,619 --> 00:51:00,387 CAN CONTINUE TO ENCOURAGE TEAM 1300 00:51:00,387 --> 00:51:01,021 AND INTEGRATED CARE I MENTIONED 1301 00:51:01,021 --> 00:51:03,657 BEFORE. 1302 00:51:03,657 --> 00:51:05,325 WE CAN'T SOLVE ALL ACCESS 1303 00:51:05,325 --> 00:51:07,828 PROBLEMS WITH WORKFORCE 1304 00:51:07,828 --> 00:51:10,664 SOLUTIONS WE CAN ATTEMPT TO 1305 00:51:10,664 --> 00:51:11,999 DIVERSIFY AND OUR GRANTS DO THAT 1306 00:51:11,999 --> 00:51:14,568 TO HELP REACH UNDER SERVED 1307 00:51:14,568 --> 00:51:15,069 COMMUNITIES. 1308 00:51:15,069 --> 00:51:18,005 WE HAVE SEVERAL PROGRAMS THAT 1309 00:51:18,005 --> 00:51:19,907 SPECIFICALLY ATTEMPT TO 1310 00:51:19,907 --> 00:51:21,375 DIVERSIFY THE WORKFORCE BY 1311 00:51:21,375 --> 00:51:22,609 ATTRACTING VARIOUS KINDS OF 1312 00:51:22,609 --> 00:51:24,511 STUDENTS AND CAN CONTINUE TO 1313 00:51:24,511 --> 00:51:27,748 HARNESS AND USE TECHNOLOGY AND 1314 00:51:27,748 --> 00:51:29,717 TELEHEALTH AND A.I. AND LAST WE 1315 00:51:29,717 --> 00:51:31,452 CAN PROMOTE PROVIDER RESILIENCE 1316 00:51:31,452 --> 00:51:33,887 AND HEALTHY LABOR FORCE WHEN 1317 00:51:33,887 --> 00:51:37,324 EMPLOYERS INVEST IN LIVING WAGES 1318 00:51:37,324 --> 00:51:40,260 AND INVEST IN HEALTH AND 1319 00:51:40,260 --> 00:51:42,896 WELLNESS OF STAFF WE'VE SEEN 1320 00:51:42,896 --> 00:51:45,365 THIS REDUCE EMPLOYER COST AND 1321 00:51:45,365 --> 00:51:48,435 IMPROVE RETENTION AND IMPROVE 1322 00:51:48,435 --> 00:51:50,204 OUTCOMES IN THE WORKFORCE 1323 00:51:50,204 --> 00:51:51,105 RESILIENCY GRANTS. 1324 00:51:51,105 --> 00:51:52,773 SO JUST SOME PROMISING 1325 00:51:52,773 --> 00:51:54,875 DEVELOPMENTS YOU'VE SEEN AGAIN 1326 00:51:54,875 --> 00:51:56,543 ON THE FOUR AREAS, CHALLENGES IF 1327 00:51:56,543 --> 00:51:57,311 YOU WILL. 1328 00:51:57,311 --> 00:52:00,314 WE HAVE SEEN MEDICAL SCHOOL 1329 00:52:00,314 --> 00:52:02,449 ENROLLMENT INCREASE NEAR 6% IN 1330 00:52:02,449 --> 00:52:03,984 THE PAST FIVE YEARS. 1331 00:52:03,984 --> 00:52:05,719 SAME FOR REGISTERED NURSES 1332 00:52:05,719 --> 00:52:06,587 THEY'RE INCREASING BY 36%. 1333 00:52:06,587 --> 00:52:08,722 THE PROBLEM IS ON THE DEMAND 1334 00:52:08,722 --> 00:52:10,023 SIDE TOO. 1335 00:52:10,023 --> 00:52:13,127 WE HAVE DEMAND GOING UP WHILE 1336 00:52:13,127 --> 00:52:14,928 THESE INDIVIDUALS ARE BEING 1337 00:52:14,928 --> 00:52:16,764 ATTRACTED TO HEALTH CARE AND 1338 00:52:16,764 --> 00:52:19,600 WHAT THIS TELLS US IS THAT 1339 00:52:19,600 --> 00:52:20,434 PEOPLE ARE STILL INTERESTED IN 1340 00:52:20,434 --> 00:52:22,536 WORKING IN THIS SPACE. 1341 00:52:22,536 --> 00:52:23,804 NOT ONLY THAT WE'RE DIVERSIFYING 1342 00:52:23,804 --> 00:52:26,473 BY GENDER IN TERMS OF MEDICAL 1343 00:52:26,473 --> 00:52:27,474 SCHOOL STUDENTS. 1344 00:52:27,474 --> 00:52:31,345 WE HAVE SEEN GROWTH FOR WOMEN BY 1345 00:52:31,345 --> 00:52:33,680 14% BETWEEN 2019 AND 2024 WHILE 1346 00:52:33,680 --> 00:52:36,750 THE NUMBER OF MALE MEDICAL 1347 00:52:36,750 --> 00:52:42,723 STUDENTS DECREASED BY 3%. 1348 00:52:42,723 --> 00:52:44,758 TEAM BASED CARE FOLLOWING THE 1349 00:52:44,758 --> 00:52:49,329 TREND OF SEVERAL DECADES 1350 00:52:49,329 --> 00:52:50,497 SPECIALTIES ARE EXPECTED TO 1351 00:52:50,497 --> 00:52:52,633 EXPERIENCE A WORSENING SHORTAGE 1352 00:52:52,633 --> 00:52:55,903 BUT WE HAVE AN OVERSUPPLY OF 1353 00:52:55,903 --> 00:52:56,670 PHYSICIAN ASSISTANTS AND THAT 1354 00:52:56,670 --> 00:53:00,274 WILL TREND FOR MANY YEARS NOW. 1355 00:53:00,274 --> 00:53:01,942 WHAT WE'RE SEEING IS THAT THESE 1356 00:53:01,942 --> 00:53:03,377 ADVANCED PRACTICE PRACTITIONERS 1357 00:53:03,377 --> 00:53:05,379 ARE ACTUALLY ABLE TO HELP 1358 00:53:05,379 --> 00:53:08,348 MITIGATE SOME OF THE SHORTAGES 1359 00:53:08,348 --> 00:53:10,984 WE'RE SEEING WITH PHYSICIAN 1360 00:53:10,984 --> 00:53:11,285 SPECIALTIES. 1361 00:53:11,285 --> 00:53:13,554 WHILE PRIMARY CARE DOCTORS THE 1362 00:53:13,554 --> 00:53:15,155 SURPLUSES IN ADVANCED 1363 00:53:15,155 --> 00:53:16,223 PRACTITIONERS CAN ALLEVIATE 1364 00:53:16,223 --> 00:53:20,194 SHORTAGES BY MAKING UP FOR THE 1365 00:53:20,194 --> 00:53:22,362 DISTRIBUTIONAL IMBALANCES, IF 1366 00:53:22,362 --> 00:53:23,230 THAT MAKES SENSE. 1367 00:53:23,230 --> 00:53:27,367 ANOTHER SOLUTION I MENTIONED, 1368 00:53:27,367 --> 00:53:27,668 TECHNOLOGY. 1369 00:53:27,668 --> 00:53:29,169 I STARTED BY SAYING WE'RE 1370 00:53:29,169 --> 00:53:36,777 LOOKING AT SHORTAGES FOR MOST 1371 00:53:36,777 --> 00:53:39,379 BEHAVIORAL PROFESSIONS. 1372 00:53:39,379 --> 00:53:41,849 TELEHEALTH ROSE FROM 1% TO 40% 1373 00:53:41,849 --> 00:53:43,250 AND REMAIN ELEVATE. 1374 00:53:43,250 --> 00:53:45,819 THIS IS IMPORTANT BECAUSE YOU 1375 00:53:45,819 --> 00:53:49,790 CAN SEE OUR COLLEAGUES AT SAMHSA 1376 00:53:49,790 --> 00:53:52,593 AND HHS HAVE TRACKED WITH 1377 00:53:52,593 --> 00:53:56,230 NATIONAL SURVEY OF SUBSTANCE USE 1378 00:53:56,230 --> 00:54:00,367 AND HEALTH THAT NEARLY 6 MILLION 1379 00:54:00,367 --> 00:54:02,803 LITTLE OVER OF ADULTS ARE 1380 00:54:02,803 --> 00:54:03,804 REPORTING IN THE LAST SURVEY 1381 00:54:03,804 --> 00:54:06,673 SAID THEY ARE DID NOT RECEIVE 1382 00:54:06,673 --> 00:54:07,941 MENTAL HEALTH TREATMENT BECAUSE 1383 00:54:07,941 --> 00:54:09,476 THEY CAN'T ACCESS A HEALTH CARE 1384 00:54:09,476 --> 00:54:10,210 PROVIDER. 1385 00:54:10,210 --> 00:54:12,880 THIS IS HOW TECHNOLOGY CAN HELP 1386 00:54:12,880 --> 00:54:14,348 IMPROVE ACCESS. 1387 00:54:14,348 --> 00:54:16,183 THE LAST THING I'LL MENTION, 1388 00:54:16,183 --> 00:54:18,852 WE'VE SEEN PROMISING 1389 00:54:18,852 --> 00:54:19,553 DEVELOPMENTS IN PROVIDER 1390 00:54:19,553 --> 00:54:19,953 RESILIENCY. 1391 00:54:19,953 --> 00:54:22,422 MY COLLEAGUES AT THE AMERICAN 1392 00:54:22,422 --> 00:54:24,391 MEDICAL ASSOCIATION HAVE BEEN 1393 00:54:24,391 --> 00:54:27,027 TRACKING BURNOUT SINCE THE 1394 00:54:27,027 --> 00:54:28,428 PANDEMIC AND YOU CAN SEE WE HIT 1395 00:54:28,428 --> 00:54:32,599 A HIGH OF 62.8% OF PHYSICIANS IN 1396 00:54:32,599 --> 00:54:34,101 THE U.S. REPORTING AT LEAST ONE 1397 00:54:34,101 --> 00:54:35,836 SYMPTOM OF BURNOUT IN 2021 AND 1398 00:54:35,836 --> 00:54:37,404 THAT NUMBER HAS NOW STEADILY 1399 00:54:37,404 --> 00:54:39,640 FALLEN AND TIMELY FOR THE FIRST 1400 00:54:39,640 --> 00:54:42,209 TIME IT'S BELOW 50% SINCE THE 1401 00:54:42,209 --> 00:54:42,709 COVID-19 PANDEMIC. 1402 00:54:42,709 --> 00:54:45,545 YOU CAN SEE THIS IS A PERSISTENT 1403 00:54:45,545 --> 00:54:45,746 ISSUE. 1404 00:54:45,746 --> 00:54:47,147 THE PANDEMIC BROUGHT ATTENTION 1405 00:54:47,147 --> 00:54:50,217 TO IT BUT IT MEANS WE HAVE TO 1406 00:54:50,217 --> 00:54:52,519 KEEP INVESTING IN OUR WORKFORCE 1407 00:54:52,519 --> 00:54:54,421 BY TRAINING AND EDUCATING OUR UP 1408 00:54:54,421 --> 00:54:56,523 AND COMING CLINICIANS AS WELL AS 1409 00:54:56,523 --> 00:54:58,625 THOSE ALREADY EXISTING IN THE 1410 00:54:58,625 --> 00:55:01,094 LABOR FORCE TO MANAGE THEIR 1411 00:55:01,094 --> 00:55:02,829 RESILIENCY AND TO MANAGE BURNOUT 1412 00:55:02,829 --> 00:55:07,100 AND WELL BEING IN CONJUNCTION 1413 00:55:07,100 --> 00:55:08,769 WITH EMPLOYERS. 1414 00:55:08,769 --> 00:55:13,473 SO MY TWO TAKEAWAYS HERE WITH 1415 00:55:13,473 --> 00:55:16,043 FUNDING FOR THE WORKFORCE, WHILE 1416 00:55:16,043 --> 00:55:18,612 THERE ARE CHALLENGES AND THERE'S 1417 00:55:18,612 --> 00:55:20,747 NUMEROUS THAT FACE US AND THEY 1418 00:55:20,747 --> 00:55:22,749 ARE PERSISTENT AND THERE ARE 1419 00:55:22,749 --> 00:55:24,518 UNDERLYING FACTORS DRIVING THEM 1420 00:55:24,518 --> 00:55:26,119 THAT ARE QUITE LARGE, THERE ARE 1421 00:55:26,119 --> 00:55:27,554 SUCCESSFUL WAYS TO ADDRESS THEM 1422 00:55:27,554 --> 00:55:28,822 IF WE'RE WILLING TO CONTINUE TO 1423 00:55:28,822 --> 00:55:31,224 BE CREATIVE, OPPORTUNISTIC AND 1424 00:55:31,224 --> 00:55:31,758 TRY NEW STRATEGY. 1425 00:55:31,758 --> 00:55:32,793 THAT'S IT. 1426 00:55:32,793 --> 00:55:33,961 THANK YOU VERY MUCH. 1427 00:55:33,961 --> 00:55:36,363 >> THANK YOU, DR. WASHKO. 1428 00:55:36,363 --> 00:55:38,532 OUR NEXT SPEAKER REPRESENTS THE 1429 00:55:38,532 --> 00:55:41,368 CDC, DR. LISA RICHARDSON IS THE 1430 00:55:41,368 --> 00:55:43,403 DIRECTOR OF THE DIVISION OF 1431 00:55:43,403 --> 00:55:46,073 CANCER PREVENTION AND CONTROL. 1432 00:55:46,073 --> 00:55:48,008 >> GOOD MORNING, EVERYONE. 1433 00:55:48,008 --> 00:55:51,378 THANK YOU FOR THE INVITATION. 1434 00:55:51,378 --> 00:55:55,315 CAN YOU HEAR ME? 1435 00:55:55,315 --> 00:55:56,416 I ALWAYS FEEL LIKE I'M TALKING 1436 00:55:56,416 --> 00:55:57,117 INTO A VOID. 1437 00:55:57,117 --> 00:56:00,988 >> WE CAN HEAR YOU. 1438 00:56:00,988 --> 00:56:01,421 >> THANK YOU. 1439 00:56:01,421 --> 00:56:02,956 THANKS FOR HAVING ME. 1440 00:56:02,956 --> 00:56:05,125 THIS WILL BE A LIGHT TOUCH TODAY 1441 00:56:05,125 --> 00:56:06,760 FROM THE CDC. 1442 00:56:06,760 --> 00:56:15,369 OUR WORK HERE IS MOSTLY IN THE 1443 00:56:15,369 --> 00:56:17,337 INFECTIOUS DISEASE AREA. 1444 00:56:17,337 --> 00:56:19,139 AND WHAT HAPPENS WITH CANCER 1445 00:56:19,139 --> 00:56:19,406 PATIENTS. 1446 00:56:19,406 --> 00:56:22,142 THE FUNDING IN OUR DIVISION IS 1447 00:56:22,142 --> 00:56:26,780 ABOUT $355 MILLION A YEAR. 1448 00:56:26,780 --> 00:56:28,382 LYMPHEDEMA IS MOSTLY A CANCER 1449 00:56:28,382 --> 00:56:30,317 SURVIVOR ISSUE AND OUR FUNDING 1450 00:56:30,317 --> 00:56:32,753 IS ONLY ABOUT $750,000 OUT OF 1451 00:56:32,753 --> 00:56:36,289 THE ENTIRE BUDGET. 1452 00:56:36,289 --> 00:56:38,725 SO SINCE IT IS A GENERAL PROBLEM 1453 00:56:38,725 --> 00:56:39,926 ACROSS CANCER AND PEOPLE HAVE 1454 00:56:39,926 --> 00:56:42,062 SURGERY AND OTHER TREATMENTS, WE 1455 00:56:42,062 --> 00:56:47,734 HAVE ATTEMPTED TO DO SOME WORK 1456 00:56:47,734 --> 00:56:53,940 IN THAT AREA. 1457 00:56:53,940 --> 00:56:55,308 THIS IS KATHY BATES. 1458 00:56:55,308 --> 00:56:58,045 I MET HERE YEARS AGO. 1459 00:56:58,045 --> 00:56:59,312 ONE THING THE LYMPHATIC 1460 00:56:59,312 --> 00:57:01,581 EDUCATION RESEARCH NETWORK 1461 00:57:01,581 --> 00:57:03,950 HIGHLIGHT AND THEY HIGHLIGHT IT 1462 00:57:03,950 --> 00:57:05,585 EVERYWHERE IS THAT THE SEVERITY 1463 00:57:05,585 --> 00:57:07,721 THE OCCURRENCE OF LYMPHEDEMA AS 1464 00:57:07,721 --> 00:57:09,356 WELL AS THE SEVERITY AND IMPACT 1465 00:57:09,356 --> 00:57:11,358 ON QUALITY OF LIFE IS NOT 1466 00:57:11,358 --> 00:57:15,962 SOMETHING THAT IS GENERALLY 1467 00:57:15,962 --> 00:57:16,196 STUDIED. 1468 00:57:16,196 --> 00:57:20,300 A LOT OF PHYSICIANS AREN'T AWARE 1469 00:57:20,300 --> 00:57:21,935 AND PATIENTS AS WELL DON'T KNOW 1470 00:57:21,935 --> 00:57:23,336 WHAT TO LOOK FOR. 1471 00:57:23,336 --> 00:57:25,238 WHAT YOU SEE IS A VIDEO SHE DID 1472 00:57:25,238 --> 00:57:27,974 FOR US A YEAR AFTER WE MET BUT 1473 00:57:27,974 --> 00:57:30,377 THERE WAS SORT OF WHEN I MET 1474 00:57:30,377 --> 00:57:33,647 WERE LIKE, SO, WHAT CAN WE DO? 1475 00:57:33,647 --> 00:57:37,584 WE HAVE NO DEDICATED FUNDING FOR 1476 00:57:37,584 --> 00:57:37,884 LYMPHEDEMA. 1477 00:57:37,884 --> 00:57:43,423 WHAT WE DID DO AT THAT POINT WAS 1478 00:57:43,423 --> 00:57:46,860 CREATE A WEB RESOURCE 1479 00:57:46,860 --> 00:57:47,461 INFORMATION TARGETED TOWARD 1480 00:57:47,461 --> 00:57:47,928 CANCER SURVIVORS. 1481 00:57:47,928 --> 00:57:49,796 WHEN I LOOK AT THE DATA OF HOW 1482 00:57:49,796 --> 00:57:53,467 MANY PEOPLE COME TO OUR WEBSITE 1483 00:57:53,467 --> 00:57:55,602 AMONG OUR CANCER SURVIVOR 1484 00:57:55,602 --> 00:57:57,471 WEBSITE THIS IS ALWAYS IN THE 1485 00:57:57,471 --> 00:57:58,638 TOP THREE TO FIVE. 1486 00:57:58,638 --> 00:58:02,642 THERE SEEMS TO BE A HUNGER FOR 1487 00:58:02,642 --> 00:58:03,477 INFORMATION. 1488 00:58:03,477 --> 00:58:07,047 A COUPLE HUNDRED THOUSANDS OF 1489 00:58:07,047 --> 00:58:08,849 VISITS PER YEAR WHEN YOU THINK 1490 00:58:08,849 --> 00:58:11,485 OF THE CONTEXT OF WHAT'S OUT 1491 00:58:11,485 --> 00:58:12,752 THERE AND PROMOTE INFORMATION 1492 00:58:12,752 --> 00:58:16,423 AND THE CONSEQUENCES FOR 1493 00:58:16,423 --> 00:58:20,760 PATIENTS WHO HAVE THIS CONDITION 1494 00:58:20,760 --> 00:58:31,138 AND DON'T FEEL HEARD. 1495 00:58:32,839 --> 00:58:34,007 OUR ADVOCATES WENT TO CONGRESS 1496 00:58:34,007 --> 00:58:37,477 AND WERE ABLE TO SECURE SOME 1497 00:58:37,477 --> 00:58:37,844 FUNDING. 1498 00:58:37,844 --> 00:58:39,613 IT WASN'T GIVEN TO THE CANCER 1499 00:58:39,613 --> 00:58:40,280 CONTROL DIVISION. 1500 00:58:40,280 --> 00:58:42,816 MY BACKGROUND I FORGOT TO 1501 00:58:42,816 --> 00:58:44,751 MENTION IS IN MEDICAL ONCOLOGIST 1502 00:58:44,751 --> 00:58:50,357 AND WHEN I WAS PRACTICING I SAW 1503 00:58:50,357 --> 00:58:52,492 BREAST CANCER PATIENTS SO 1504 00:58:52,492 --> 00:58:54,294 LYMPHEDEMA IS SOMETHING WE SAW A 1505 00:58:54,294 --> 00:58:57,597 LOT AND CONGRESS FUNDED CHRONIC 1506 00:58:57,597 --> 00:59:00,367 DISEASE EDUCATION AWARENESS AND 1507 00:59:00,367 --> 00:59:03,603 MULTIPLE GROUPS WERE FUNDED 1508 00:59:03,603 --> 00:59:07,207 INCLUDE OBSTRUCTIVE SLEEP APNEA, 1509 00:59:07,207 --> 00:59:12,245 HEARING LOSS AND HAIR LOSS AND 1510 00:59:12,245 --> 00:59:16,416 COPD AND CYSTIC FIBROSIS. 1511 00:59:16,416 --> 00:59:18,251 IT'S A PLACE WHERE THE FORGOTTEN 1512 00:59:18,251 --> 00:59:21,621 AND RARE CONDITIONS THAT AREN'T 1513 00:59:21,621 --> 00:59:22,489 GETTING A LOT OF ATTENTION IN 1514 00:59:22,489 --> 00:59:26,393 THE PUBLIC HEALTH ARENA. 1515 00:59:26,393 --> 00:59:27,494 . 1516 00:59:27,494 --> 00:59:28,562 SOME ARGUE IS IT PUBLIC HEALTH 1517 00:59:28,562 --> 00:59:29,763 OR MEDICAL CARE? 1518 00:59:29,763 --> 00:59:31,565 WE STRUGGLE WITH THAT WHEN I'M 1519 00:59:31,565 --> 00:59:33,366 OUT TALKING ABOUT THE WORK WE 1520 00:59:33,366 --> 00:59:34,000 DO. 1521 00:59:34,000 --> 00:59:39,039 THIS WAS A GRANT NOT OUR USUAL 1522 00:59:39,039 --> 00:59:40,340 FUNDING MECHANISM WHICH IS A 1523 00:59:40,340 --> 00:59:41,341 COOPERATIVE AGREEMENT. 1524 00:59:41,341 --> 00:59:45,979 THIS ONE ENDED YESTERDAY AND THE 1525 00:59:45,979 --> 00:59:48,949 NEW ONE WILL BE COMING UP 1526 00:59:48,949 --> 00:59:53,920 TOMORROW. 1527 00:59:53,920 --> 00:59:56,723 JUST TO GO OVER A FEW OF THE 1528 00:59:56,723 --> 00:59:58,325 ACCOMPLISHMENTS OF THE FUNDING 1529 00:59:58,325 --> 01:00:00,260 WAS ABOUT $1.1 MILLION OVER 1530 01:00:00,260 --> 01:00:01,194 THREE YEARS. 1531 01:00:01,194 --> 01:00:04,764 THEY DID A TON OF WORK, CREATED 1532 01:00:04,764 --> 01:00:07,601 ONE-PAGE SUMMARIES AND NATIONAL 1533 01:00:07,601 --> 01:00:08,768 INDICATOR REPORT AVAILABLE ON 1534 01:00:08,768 --> 01:00:11,571 THEIR WEBSITE AND WE HAVE LINKS 1535 01:00:11,571 --> 01:00:12,539 FROM OUR WEBSITE AS WELL. 1536 01:00:12,539 --> 01:00:13,974 LOTS OF PRESENTATIONS, 1537 01:00:13,974 --> 01:00:16,443 CONFERENCES, SPEAKING 1538 01:00:16,443 --> 01:00:16,910 ENGAGEMENTS AND OTHER 1539 01:00:16,910 --> 01:00:23,216 OPPORTUNITIES. 1540 01:00:23,216 --> 01:00:29,589 SOW WHAT -- SO YOU SEE THE 1541 01:00:29,589 --> 01:00:32,759 REPORT AND ONE OF THE BIGGEST 1542 01:00:32,759 --> 01:00:35,328 CHALLENGES AND OTHERS HAS HAD AS 1543 01:00:35,328 --> 01:00:38,265 WELL IS WHAT IS THE PATIENT 1544 01:00:38,265 --> 01:00:39,165 EXPERIENCE IN THE FIELD OUT 1545 01:00:39,165 --> 01:00:42,269 WHERE YOU LIVE AND YOUR DAILY 1546 01:00:42,269 --> 01:00:43,403 LIFE. 1547 01:00:43,403 --> 01:00:46,406 AND THEY DID SURVEYS, ANALYZED 1548 01:00:46,406 --> 01:00:47,841 DATA AND PUBLISHED A PAPER AND 1549 01:00:47,841 --> 01:00:49,009 I'LL SHOW YOU ONE GRAPHIC FROM 1550 01:00:49,009 --> 01:00:57,183 THAT LATER. 1551 01:00:57,183 --> 01:00:59,219 AGAIN, THERE'S ASK THE EXPERTS. 1552 01:00:59,219 --> 01:01:00,754 SOME OF THE WORK THEY DID AND 1553 01:01:00,754 --> 01:01:02,689 THE INDICATOR REPORT WEB PAGE 1554 01:01:02,689 --> 01:01:05,158 HAS ACCESS TO THE REPORT, 1555 01:01:05,158 --> 01:01:08,128 DOWNLOADS, FEATURES AND OVER 1556 01:01:08,128 --> 01:01:12,465 1,000 HEALTH CARE PROVIDERS THAT 1557 01:01:12,465 --> 01:01:15,602 RECEIVED INFORMATION RELATED TO 1558 01:01:15,602 --> 01:01:16,503 LYMPHEDEMA. 1559 01:01:16,503 --> 01:01:19,205 I BELIEVE THIS IS THE LAST 1560 01:01:19,205 --> 01:01:19,439 SLIGHT. 1561 01:01:19,439 --> 01:01:20,774 AS I SAID EARLIER OUR WORK 1562 01:01:20,774 --> 01:01:24,544 WITHIN THE AREA OF LYMPHEDEMA 1563 01:01:24,544 --> 01:01:28,248 HAS NOT BEEN -- IS A CHALLENGE. 1564 01:01:28,248 --> 01:01:32,252 WE DO IT, CANCER SURVIVOR, 1565 01:01:32,252 --> 01:01:36,289 HEALTH AND WEALTHNESS, QUALITY 1566 01:01:36,289 --> 01:01:37,424 OF LIFE IS PRIORITIZED WITHIN 1567 01:01:37,424 --> 01:01:40,126 THE FUNDING LINE WE HAVE BUT 1568 01:01:40,126 --> 01:01:41,261 WHAT THE GRAPH SHOWS AND I'D 1569 01:01:41,261 --> 01:01:43,630 RECOMMEND YOU GET THE PAPER AND 1570 01:01:43,630 --> 01:01:45,131 READ IT. 1571 01:01:45,131 --> 01:01:50,503 IT'S NICELY DONE BUT HERE IT 1572 01:01:50,503 --> 01:01:51,604 TALKS ABOUT HAS ANYONE EVER 1573 01:01:51,604 --> 01:01:53,973 TALKED TO YOU ABOUT IT OR 1574 01:01:53,973 --> 01:01:54,808 EXAMINED YOU AND HAVE YOU EVER 1575 01:01:54,808 --> 01:01:55,642 BEEN REFERRED. 1576 01:01:55,642 --> 01:01:59,813 YOU'LL SEE THE VAST MAJORITY OF 1577 01:01:59,813 --> 01:02:03,616 PEOPLE THAT HAVE LYMPHEDEMA SAY 1578 01:02:03,616 --> 01:02:10,256 THESE HAVEN'T HAPPENED AND SOME 1579 01:02:10,256 --> 01:02:12,559 ARE AN EFFORT TO EDUCATE BOTH 1580 01:02:12,559 --> 01:02:15,595 SIDES OF THE COIN AND EDUCATE 1581 01:02:15,595 --> 01:02:18,098 PEOPLE WHO HAVE LYMPHEDEMA, AT 1582 01:02:18,098 --> 01:02:20,500 RISK FOR LYMPHEDEMA AND EDUCATE 1583 01:02:20,500 --> 01:02:21,935 PROVIDERS THAT WAY AS WELL. 1584 01:02:21,935 --> 01:02:24,204 AT CDC THAT'S ONE THING WE TRY 1585 01:02:24,204 --> 01:02:25,905 TO DO AND EDUCATE THE PEOPLE WHO 1586 01:02:25,905 --> 01:02:28,541 ARE AT RISK OR HAVE THE 1587 01:02:28,541 --> 01:02:29,676 CONDITION AS WELL AS THOSE 1588 01:02:29,676 --> 01:02:32,779 PROVIDERS WHO TAKE CARE OF THE 1589 01:02:32,779 --> 01:02:34,881 PATIENTS. 1590 01:02:34,881 --> 01:02:36,282 THIS HAS BEEN A GREAT 1591 01:02:36,282 --> 01:02:38,318 OPPORTUNITY FOR ME AND THANKS 1592 01:02:38,318 --> 01:02:39,185 AGAIN HEARING THE WORK OF THE 1593 01:02:39,185 --> 01:02:41,054 OTHER FEDERAL AGENCIES. 1594 01:02:41,054 --> 01:02:44,257 I SEE A LOT OF PLACES WHERE YOU 1595 01:02:44,257 --> 01:02:45,625 MIGHT BE ABLE TO MAKE 1596 01:02:45,625 --> 01:02:46,493 CONNECTIONS SIMILAR TO WHAT 1597 01:02:46,493 --> 01:02:48,228 DR. KENNEDY SAID ABOUT COMING TO 1598 01:02:48,228 --> 01:02:49,095 THE MEETING LAST TIME. 1599 01:02:49,095 --> 01:02:54,100 I SEE PLACES THAT OVERLAP HERE 1600 01:02:54,100 --> 01:02:55,368 AND THAT'S ALL I HAVE. 1601 01:02:55,368 --> 01:02:57,137 I LOOK FORWARD TO QUESTIONS AND 1602 01:02:57,137 --> 01:02:57,804 RECOMMENDATIONS AND SUGGESTIONS 1603 01:02:57,804 --> 01:02:58,171 FROM THE GROUP. 1604 01:02:58,171 --> 01:02:59,973 THANK YOU. 1605 01:02:59,973 --> 01:03:02,008 >> THANK YOU, DR. RICHARDSON. 1606 01:03:02,008 --> 01:03:04,210 OUR FINAL SPEAKERS ARE FROM THE 1607 01:03:04,210 --> 01:03:08,248 FDA, WE HAVE DR. JORDAN POMEROY 1608 01:03:08,248 --> 01:03:10,784 SENIOR PHYSICIAN IN THE DIVISION 1609 01:03:10,784 --> 01:03:16,189 OF CARDIOLOGY AND DR. SONIA 1610 01:03:16,189 --> 01:03:18,758 SINGH THE CLINICAL REVIEWER FOR 1611 01:03:18,758 --> 01:03:24,464 THE DIVISION OF ONCOLOGY TOO. 1612 01:03:24,464 --> 01:03:27,000 >> I'LL SEE IF MY COLLEAGUE, 1613 01:03:27,000 --> 01:03:28,034 DR. SINGH IS ON THE LINE. 1614 01:03:28,034 --> 01:03:29,502 >> GOOD MORNING. 1615 01:03:29,502 --> 01:03:31,070 I'M THE LINE. 1616 01:03:31,070 --> 01:03:32,672 JORDAN, WOULD YOU LIKE TO 1617 01:03:32,672 --> 01:03:33,640 INTRODUCE YOURSELF FIRST. 1618 01:03:33,640 --> 01:03:35,141 >> SOUNDS GOOD. 1619 01:03:35,141 --> 01:03:38,445 THANKS FOR THE INVITATION ON 1620 01:03:38,445 --> 01:03:40,647 BEHALF OF FDA TO INTRODUCE THE 1621 01:03:40,647 --> 01:03:40,947 COMMISSION. 1622 01:03:40,947 --> 01:03:42,549 I'M JORDAN POMEROY I'M A 1623 01:03:42,549 --> 01:03:45,485 CLINICAL REVIEWER MEDICAL 1624 01:03:45,485 --> 01:03:47,086 OFFICER WITHIN THE DIVISION OF 1625 01:03:47,086 --> 01:03:53,827 CARDIOLOGY AND NEPHROLOGY AND 1626 01:03:53,827 --> 01:03:56,296 CARDIOLOGIST BY TRAINING IN 1627 01:03:56,296 --> 01:03:58,631 GENERAL AND IT'S A LYMPHATIC 1628 01:03:58,631 --> 01:04:01,634 ORIGIN OF THE DISEASE GOING TO 1629 01:04:01,634 --> 01:04:04,704 THE DIVISION OF CARDIOLOGY AND 1630 01:04:04,704 --> 01:04:05,538 NEPHROLOGY AND EXTREME 1631 01:04:05,538 --> 01:04:07,307 CARDIOVASCULAR DISEASES AND 1632 01:04:07,307 --> 01:04:08,408 ALLOW DR. SINGH TO INTRODUCE 1633 01:04:08,408 --> 01:04:10,477 HERSELF. 1634 01:04:10,477 --> 01:04:12,245 >> GOOD MORNING. 1635 01:04:12,245 --> 01:04:14,414 I'M A PEDIATRIC ONCOLOGIST AND 1636 01:04:14,414 --> 01:04:15,548 CLINICAL REVIEWER AT THE FDA. 1637 01:04:15,548 --> 01:04:17,784 THANK YOU FOR INVITING US TO 1638 01:04:17,784 --> 01:04:18,485 PARTICIPATE IN THE MEETING AND 1639 01:04:18,485 --> 01:04:21,120 HAPPY TO JOIN THE DISCUSSION. 1640 01:04:21,120 --> 01:04:24,057 I WAS GOING TO BRIEFLY INTRODUCE 1641 01:04:24,057 --> 01:04:26,359 FDA ITSELF, JORDAN, UNLESS YOU 1642 01:04:26,359 --> 01:04:28,761 HAD PLANS TO DO SO I CAN TALK A 1643 01:04:28,761 --> 01:04:30,930 LITTLE BIT ABOUT HOW WE OPERATE. 1644 01:04:30,930 --> 01:04:31,598 >> ABSOLUTELY. 1645 01:04:31,598 --> 01:04:32,899 HAPPY TO FOLLOW UP. 1646 01:04:32,899 --> 01:04:33,800 >> GREAT. 1647 01:04:33,800 --> 01:04:35,301 THE FDA HAS SEVERAL CENTERS. 1648 01:04:35,301 --> 01:04:38,605 I OPERATE IN THE CENTER OF DRUG 1649 01:04:38,605 --> 01:04:39,372 EVALUATION AND RESEARCH AS WELL 1650 01:04:39,372 --> 01:04:40,006 AS JORDAN. 1651 01:04:40,006 --> 01:04:43,776 AND IN THAT OFFICE I WORK WITHIN 1652 01:04:43,776 --> 01:04:46,079 OOD OR THE OFFICE OF ONCOLOGIC 1653 01:04:46,079 --> 01:04:48,381 DISEASES I REVIEW DRUG 1654 01:04:48,381 --> 01:04:50,617 DEVELOPMENT PROGRAMS WITH 1655 01:04:50,617 --> 01:04:52,752 PEDIATRIC SOLID AND RARE AND 1656 01:04:52,752 --> 01:04:55,221 BRAIN TUMORS SPECIFICALLY WITHIN 1657 01:04:55,221 --> 01:04:56,456 THE DIVISION OF ONCOLOGY TOO. 1658 01:04:56,456 --> 01:04:57,957 I DON'T HAVE SLIDES BUT WOULD 1659 01:04:57,957 --> 01:04:59,859 LIKE TO SELL THE GROUP ABOUT OOD 1660 01:04:59,859 --> 01:05:02,695 FOR ANYONE NOT FAMILIAR. 1661 01:05:02,695 --> 01:05:04,430 THIS OFFICE OVERSEES THE 1662 01:05:04,430 --> 01:05:05,632 DEVELOPMENT, APPROVAL AND 1663 01:05:05,632 --> 01:05:08,201 REGULATION OF DRUGS AND 1664 01:05:08,201 --> 01:05:09,035 BIOLOGICS FOR CANCER. 1665 01:05:09,035 --> 01:05:10,703 WE'RE CHARGED WITH ENSURING THE 1666 01:05:10,703 --> 01:05:11,271 THERAPIES ARE SAFE AND EFFECTIVE 1667 01:05:12,906 --> 01:05:14,941 FOR THE USE OF THE U.S. PUBLIC 1668 01:05:14,941 --> 01:05:19,078 AND FOR CONTEXT OOD CONSISTS OF 1669 01:05:19,078 --> 01:05:22,081 MORE THAN 130 PHYSICIANS, 1670 01:05:22,081 --> 01:05:23,583 SCIENTISTS AS WELL AS REGULATORY 1671 01:05:23,583 --> 01:05:24,651 PROJECT MANAGERS. 1672 01:05:24,651 --> 01:05:30,523 OUR GROUP HAS EXPERTISE IN SOLID 1673 01:05:30,523 --> 01:05:36,095 TUMORS AND MAG -- MALIGNANCIES 1674 01:05:36,095 --> 01:05:36,896 AND THREE DIVISIONS. 1675 01:05:36,896 --> 01:05:40,667 ONE IS SOLID TUMORS AND TWO 1676 01:05:40,667 --> 01:05:43,236 DEDICATED TO HEMATOLOGIC 1677 01:05:43,236 --> 01:05:44,704 MALIGNANCIES AND FOR THE 1678 01:05:44,704 --> 01:05:47,206 NON-CLINICAL REVIEW TEAM 1679 01:05:47,206 --> 01:05:47,907 OVERSEEING PROJECTS. 1680 01:05:47,907 --> 01:05:51,611 IN TOTAL WE COMPRISE SIX 1681 01:05:51,611 --> 01:05:53,012 DIFFERENT DIVISIONS AND OUR 1682 01:05:53,012 --> 01:05:54,414 OFFICE WORKS IN PARTNERSHIP WITH 1683 01:05:54,414 --> 01:05:55,915 THE ONCOLOGY CENTER OF 1684 01:05:55,915 --> 01:05:57,250 EXCELLENCE OR THE OCE. 1685 01:05:57,250 --> 01:05:59,385 SOME MAY BE FAMILIAR WITH THIS. 1686 01:05:59,385 --> 01:06:02,288 THIS BODY IS HEADED BY 1687 01:06:02,288 --> 01:06:07,226 DR. CANISTER AND THE OCD SERVES 1688 01:06:07,226 --> 01:06:10,296 AS AN INTER-CENTER INSTITUTE 1689 01:06:10,296 --> 01:06:11,831 DESIGN TO HELP STREAMLINE REVIEW 1690 01:06:11,831 --> 01:06:14,567 AND INITIATIVES AND HELPS TO 1691 01:06:14,567 --> 01:06:15,868 LEAD RESEARCH, EDUCATIONAL 1692 01:06:15,868 --> 01:06:17,370 OUTREACH PROJECTS AND OTHER 1693 01:06:17,370 --> 01:06:19,305 PROGRAMS FOR DRUG DEVELOPMENT 1694 01:06:19,305 --> 01:06:20,106 FOR PATIENTS WITH CANCER. 1695 01:06:20,106 --> 01:06:22,442 I KNOW WE'RE SHORT ON TIME SO I 1696 01:06:22,442 --> 01:06:25,244 WON'T GET INTO SPECIFICS OF THE 1697 01:06:25,244 --> 01:06:26,913 REGULATORY INITIATIVES DURING 1698 01:06:26,913 --> 01:06:28,314 THE INTRODUCTORY PORTION BUT I'M 1699 01:06:28,314 --> 01:06:31,217 SURE WE CAN MENTION THAT DURING 1700 01:06:31,217 --> 01:06:32,952 THE PANEL DISCUSSION SINCE THE 1701 01:06:32,952 --> 01:06:35,355 FDA HAS SEVERAL PROGRAMS TO 1702 01:06:35,355 --> 01:06:36,756 EXPEDITE DRUG DEVELOPMENT AS 1703 01:06:36,756 --> 01:06:38,825 WELL AS INITIATIVES TO PROMOTE 1704 01:06:38,825 --> 01:06:39,726 DRUG DEVELOPMENT FOR RARE 1705 01:06:39,726 --> 01:06:39,993 DISEASES. 1706 01:06:39,993 --> 01:06:42,362 I'LL STOP THERE AND JORDAN, FEEL 1707 01:06:42,362 --> 01:06:44,230 FREE TO ANYTHING YOU'D LIKE TO 1708 01:06:44,230 --> 01:06:45,198 ADD ABOUT YOUR DIVISION 1709 01:06:45,198 --> 01:06:46,032 SPECIFICALLY OR ANYTHING ELSE 1710 01:06:46,032 --> 01:06:48,234 YOU DO. 1711 01:06:48,234 --> 01:06:48,668 >> APPRECIATE THAT. 1712 01:06:48,668 --> 01:06:50,536 I AGREE WITH DR. SINGH. 1713 01:06:50,536 --> 01:06:53,272 I THINK OUR CONTRIBUTION IS BEST 1714 01:06:53,272 --> 01:06:56,109 IN THE PARAMETER OF DISCUSSIONS 1715 01:06:56,109 --> 01:06:58,945 AND QUESTIONS THAT MANY CO UP. 1716 01:06:58,945 --> 01:07:00,713 WE'RE THE ULTIMATE ORGANIZATION 1717 01:07:00,713 --> 01:07:01,848 THAT REVIEWS SAFE AND EFFECTIVE 1718 01:07:01,848 --> 01:07:04,684 MARKETING OF A DRUG VERSUS 1719 01:07:04,684 --> 01:07:04,951 DISEASE. 1720 01:07:04,951 --> 01:07:08,755 I THINK WHAT'S KEY HERE IS 1721 01:07:08,755 --> 01:07:11,557 LYMPHATIC DISEASES REPRESENT 1722 01:07:11,557 --> 01:07:12,925 UNMET CLINICAL NEED WITH A BAR 1723 01:07:12,925 --> 01:07:15,662 OF FLEXIBILITY WHEN WE CONSIDER 1724 01:07:15,662 --> 01:07:17,897 HOW TO REVIEW AN EVIDENTIARY 1725 01:07:17,897 --> 01:07:19,899 BASIS FOR REVIEWING SOMETHING IS 1726 01:07:19,899 --> 01:07:22,268 SAFE AND EFFECTIVE FOR USED FOR 1727 01:07:22,268 --> 01:07:24,003 SPECIFIC INDICATION. 1728 01:07:24,003 --> 01:07:26,105 WHILE WE'RE ON THAT PENULTIMATE 1729 01:07:26,105 --> 01:07:27,940 ORGANIZATION WE SEEK OUT EARLY 1730 01:07:27,940 --> 01:07:28,307 ENGAGEMENT. 1731 01:07:28,307 --> 01:07:31,377 AS DR. SINGH ELUCIDATED WE HAVE 1732 01:07:31,377 --> 01:07:32,779 SEVERAL MECHANISMS BY WHICH WE 1733 01:07:32,779 --> 01:07:35,481 CAN ENCOURAGE THAT EARLY 1734 01:07:35,481 --> 01:07:37,684 ENGAGEMENT BEEN THE PRECLINICAL 1735 01:07:37,684 --> 01:07:41,721 DEVELOPMENT SPACE AND HAPPY TO 1736 01:07:41,721 --> 01:07:46,125 DISCUSS THOSE AS QUESTIONS COME 1737 01:07:46,125 --> 01:07:46,292 UP. 1738 01:07:46,292 --> 01:07:48,761 I BELIEVE THE ONCOLOGY GROUP IS 1739 01:07:48,761 --> 01:07:52,565 A LARGER GROUP FOCUSSED ON AREAS 1740 01:07:52,565 --> 01:07:59,205 THAT ENCOMPASS LYMPHATIC DISEASE 1741 01:07:59,205 --> 01:08:01,774 MORE THAN VASCULAR AND WE DON'T 1742 01:08:01,774 --> 01:08:02,675 LEARN A LOT ABOUT LYMPHATIC 1743 01:08:02,675 --> 01:08:03,976 DISEASE IN OUR CLINICAL TRAINING 1744 01:08:03,976 --> 01:08:06,646 OTHER THAN A CARDIOLOGIST I 1745 01:08:06,646 --> 01:08:11,417 RECOGNIZE THE LYMPH SYSTEM 1746 01:08:11,417 --> 01:08:13,019 OUTLET IS CLOSE TO THE RIGHT 1747 01:08:13,019 --> 01:08:15,655 ATRIUM BUT EVEN THAT I THINK IS 1748 01:08:15,655 --> 01:08:17,590 NOT COMPLETELY UNDERSTAND HOW 1749 01:08:17,590 --> 01:08:20,226 THAT CIRCULATION WORKS BUT AGAIN 1750 01:08:20,226 --> 01:08:22,061 WE'RE HAPPY TO BE HERE TO 1751 01:08:22,061 --> 01:08:23,129 PARTICIPATE IN THE DISCUSSION 1752 01:08:23,129 --> 01:08:24,731 AND WE'D LOVE TO HEAR YOUR INPUT 1753 01:08:24,731 --> 01:08:27,667 AND HOW WE MAY BEST SERVE THE 1754 01:08:27,667 --> 01:08:32,805 COMMUNITY. 1755 01:08:32,805 --> 01:08:35,475 >> THANKS TO BOTH OF YOU AND 1756 01:08:35,475 --> 01:08:36,776 I'LL TURN IT OVER TO MY 1757 01:08:36,776 --> 01:08:38,411 CO-CHAIR. 1758 01:08:38,411 --> 01:08:40,580 >> WELL, THREW TO ALL OF OUR 1759 01:08:40,580 --> 01:08:43,049 PANELISTS AND GUESTS TODAY FOR 1760 01:08:43,049 --> 01:08:45,718 SHARING SO MUCH ABOUT WHAT YOU 1761 01:08:45,718 --> 01:08:45,952 DO. 1762 01:08:45,952 --> 01:08:47,687 YOU'VE INSPIRED A LOT OF 1763 01:08:47,687 --> 01:08:49,055 QUESTIONS EVEN COMING INTO THE 1764 01:08:49,055 --> 01:08:50,256 MEETING BUT I'M SURE MORE TODAY. 1765 01:08:50,256 --> 01:08:52,291 ALL OF OUR COMMITTEES HAVE 1766 01:08:52,291 --> 01:08:53,493 ALIGNED ON SOME QUESTIONS FOR 1767 01:08:53,493 --> 01:08:56,462 YOU SO I FIRST WANT TO TURN IT 1768 01:08:56,462 --> 01:08:59,899 OVER TO THE COMMITTEES TO ASK 1769 01:08:59,899 --> 01:09:01,901 THE QUESTIONS. 1770 01:09:01,901 --> 01:09:12,378 ANY VOLUNTEERS TO GO FIRST? 1771 01:09:14,113 --> 01:09:18,518 >> I REPRESENT THE MEASURABLE 1772 01:09:18,518 --> 01:09:19,719 RESULTS. 1773 01:09:19,719 --> 01:09:22,121 AND I JUST THINK I'M CURIOUS LOU 1774 01:09:22,121 --> 01:09:26,159 TO MEASURE HOW WELL THINGS ARE 1775 01:09:26,159 --> 01:09:26,425 WORKING. 1776 01:09:26,425 --> 01:09:28,494 METRICS ARE IMPORTANT TO AN 1777 01:09:28,494 --> 01:09:29,061 ORGANIZATION AND HOW THOSE 1778 01:09:29,061 --> 01:09:32,865 AFFECT YOUR PRIORITIES. 1779 01:09:32,865 --> 01:09:35,268 LET ME GIVE AN EXAMPLE. 1780 01:09:35,268 --> 01:09:36,435 WHAT IS THE LYMPHATIC DISEASE 1781 01:09:36,435 --> 01:09:39,438 COMMUNITY NEED TO DO TO GET 1782 01:09:39,438 --> 01:09:42,475 INSURERS TO HELP WITH LYMPHATIC 1783 01:09:42,475 --> 01:09:42,708 DISEASE? 1784 01:09:42,708 --> 01:09:45,244 THAT'S AN EXAMPLE. 1785 01:09:45,244 --> 01:09:48,781 HOW DO YOU MEASURE YOUR SUCCESS 1786 01:09:48,781 --> 01:09:49,882 IN DOING SOMETHING LIKE THAT? 1787 01:09:49,882 --> 01:09:53,085 IS IT WHAT YOU FUND AND HOW MUCH 1788 01:09:53,085 --> 01:09:56,756 YOU FUND? 1789 01:09:56,756 --> 01:10:00,760 WHERE YOU GO? 1790 01:10:00,760 --> 01:10:03,563 I'LL LET KIMBERLY ANSWER MORE 1791 01:10:03,563 --> 01:10:05,131 SFIFKLY BUT THERE'S SOME NICE 1792 01:10:05,131 --> 01:10:07,166 EXAMPLES OF PLAQUE MET RUKZ WE 1793 01:10:07,166 --> 01:10:09,669 PUT IN PLACE IN THE PROGRAM TO 1794 01:10:09,669 --> 01:10:11,237 REALLY DEFINE WHAT A THERAPEUTIC 1795 01:10:11,237 --> 01:10:13,105 LOOKS LIKES IN THIS SPACE. 1796 01:10:13,105 --> 01:10:15,374 THAT WAS HARD TO DO STARTING 1797 01:10:15,374 --> 01:10:15,842 FROM ZERO. 1798 01:10:15,842 --> 01:10:18,477 SO KIMBERLY DID A NICE JOB OF 1799 01:10:18,477 --> 01:10:20,446 THAT AND LET YOU SPEAK TO THAT 1800 01:10:20,446 --> 01:10:21,080 BUT METRICS ARE REALLY IMPORTANT 1801 01:10:21,080 --> 01:10:31,190 TO US. 1802 01:10:41,400 --> 01:10:46,672 I HAD TO PUT IN QUANTITATIVE HET 1803 01:10:46,672 --> 01:10:51,077 METRICS BASED ON EVIDENCE AND 1804 01:10:51,077 --> 01:10:51,677 A 1805 01:10:51,677 --> 01:10:54,080 AAS -- AND AS AMY SAID THERE'S 1806 01:10:54,080 --> 01:10:55,214 NOT A LOT OF EVIDENT. 1807 01:10:55,214 --> 01:10:57,783 WE HAD TO LOOK AT EXAMPLES CLOSE 1808 01:10:57,783 --> 01:11:00,753 TO LYMPHATICS AND/OR REACH OUT 1809 01:11:00,753 --> 01:11:08,027 TO STAKEHOLDERS FOR ADVICE BUT 1810 01:11:08,027 --> 01:11:16,736 THEN WE CREATED BASED ON AND 1811 01:11:16,736 --> 01:11:20,606 HAVE AT LEAST MINIMAL RESULTS OR 1812 01:11:20,606 --> 01:11:30,917 HOPEFULLY STRIVE FOR IDEAL. 1813 01:11:30,917 --> 01:11:32,385 WE MADE THEM DIFFICULT BUT 1814 01:11:32,385 --> 01:11:33,619 ACHIEVABLE GIVEN THE RESOURCES 1815 01:11:33,619 --> 01:11:35,488 TO GET IT DONE. 1816 01:11:35,488 --> 01:11:40,760 WHAT WE DID DO IS REACH OUT TO 1817 01:11:40,760 --> 01:11:45,831 FDA COLLEAGUES TO ENSURE IT WAS 1818 01:11:45,831 --> 01:11:48,000 DOABLE AND THEN WHAT WE DID WAS 1819 01:11:48,000 --> 01:11:51,804 WE BASED ON THE FDA GUIDELINES 1820 01:11:51,804 --> 01:11:55,041 AND ASKED OUR PERFORMERS TO COME 1821 01:11:55,041 --> 01:11:59,645 IN, OUR PROPOSERS TO COME IN AND 1822 01:11:59,645 --> 01:12:01,347 IF THEY CAN'T REACH THOSE 1823 01:12:01,347 --> 01:12:04,483 METRICS, THEY NEED TO BE ABLE TO 1824 01:12:04,483 --> 01:12:07,053 JUSTIFY TO US WHAT THEY BELIEVE 1825 01:12:07,053 --> 01:12:12,425 THEY CAN DO AND WE WOULD DISCUSS 1826 01:12:12,425 --> 01:12:14,760 AND NEGOTIATE. 1827 01:12:14,760 --> 01:12:18,731 BUT THE BUT IS THERE ARE DEFINED 1828 01:12:18,731 --> 01:12:19,131 METRICS. 1829 01:12:19,131 --> 01:12:20,299 THERE'S THREE PHASES IN OUR 1830 01:12:20,299 --> 01:12:23,336 PROGRAM AND IN ORDER TO MOVE TO 1831 01:12:23,336 --> 01:12:29,241 THE NEXT PHASE, THOSE METRICS 1832 01:12:29,241 --> 01:12:32,178 NEED TO BE COMPLETED, 1833 01:12:32,178 --> 01:12:33,479 DELIVERABLES DONE AND IF THERE'S 1834 01:12:33,479 --> 01:12:35,514 A LOT OF MANAGEMENT AND 1835 01:12:35,514 --> 01:12:37,883 OVERSIGHT THEN WE SIT TOGETHER 1836 01:12:37,883 --> 01:12:40,152 AND TRY TO FIGURE OUT WHY IT'S 1837 01:12:40,152 --> 01:12:44,523 NOT BEING DONE AND HOW WE COULD 1838 01:12:44,523 --> 01:12:44,857 MITIGATE THEM. 1839 01:12:44,857 --> 01:12:48,728 AND I THINK ANOTHER REALLY 1840 01:12:48,728 --> 01:12:50,629 IMPORTANT THING OUR FDA 1841 01:12:50,629 --> 01:12:52,264 COLLEAGUES HAVE MENTIONED, 1842 01:12:52,264 --> 01:12:53,599 ENGAGING EARLY. 1843 01:12:53,599 --> 01:12:57,570 SO WE ARE GOING TO ASK OUR 1844 01:12:57,570 --> 01:13:00,773 PROPOSERS, PERFORMERS TO ENGAGE 1845 01:13:00,773 --> 01:13:04,877 VERY EARLY AND WE'RE GOING TO 1846 01:13:04,877 --> 01:13:07,580 INVITE FDA IN AND NIH. 1847 01:13:07,580 --> 01:13:11,350 WE WANT EVERYONE AT THE TABLE. 1848 01:13:11,350 --> 01:13:16,756 SO THE TECHNOLOGIES ARE 1849 01:13:16,756 --> 01:13:18,691 SUCCESSFUL. 1850 01:13:18,691 --> 01:13:23,295 >> CAN I ASK A FOLLOW-UP 1851 01:13:23,295 --> 01:13:23,562 QUESTION? 1852 01:13:23,562 --> 01:13:26,966 SO, IS ARPA-H ARE YOU ABLE TO -- 1853 01:13:26,966 --> 01:13:31,037 WOULD YOU BE ABLE TO SHARE WHAT 1854 01:13:31,037 --> 01:13:33,205 THOSE METRICS ARE WITH US? 1855 01:13:33,205 --> 01:13:35,307 THERE'S SPECIFIC CURIOSITY 1856 01:13:35,307 --> 01:13:36,475 AROUND THAT AND A BIGGER 1857 01:13:36,475 --> 01:13:38,411 QUESTION IS FOR ARPA-H AT THE 1858 01:13:38,411 --> 01:13:41,013 CONCLUSION OF THE SIX YEAR 1859 01:13:41,013 --> 01:13:44,784 PROGRAM HOW DO YOU DECIDE THIS 1860 01:13:44,784 --> 01:13:50,356 WAS A GOOD BET? 1861 01:13:50,356 --> 01:13:52,158 >> WE CAN SHARE THAT IT'S PUBLIC 1862 01:13:52,158 --> 01:13:55,694 AND KIMBERLY CAN SHARE THE PDF 1863 01:13:55,694 --> 01:13:55,928 VERSION. 1864 01:13:55,928 --> 01:14:06,472 WE DON'T HAVE SPECIFIC MELT 1865 01:14:06,472 --> 01:14:17,016 METRICS YET AROUND UP DARPA WE 1866 01:14:21,520 --> 01:14:22,488 DON'T HAVE THAT IN THE HEALTH 1867 01:14:22,488 --> 01:14:27,460 CARE SECTOR AND IN MANY CASES WE 1868 01:14:27,460 --> 01:14:31,030 NEED COMMERCIAL ENTITIES AND 1869 01:14:31,030 --> 01:14:32,498 HAND THEM OFF TO HEALTH CARE 1870 01:14:32,498 --> 01:14:32,765 PROVIDERS. 1871 01:14:32,765 --> 01:14:36,769 WE WANT TO MAKE SURE WE DON'T 1872 01:14:36,769 --> 01:14:39,905 MEET BILLION, MILLION-DOLLAR 1873 01:14:39,905 --> 01:14:41,173 THERAPIES AND HAVE COST METRICS 1874 01:14:41,173 --> 01:14:43,142 AND BUILD IN NEGOTIATING TERMS 1875 01:14:43,142 --> 01:14:46,579 IN OUR CONTRACTS REQUIRING COST 1876 01:14:46,579 --> 01:14:46,812 LIMITS. 1877 01:14:46,812 --> 01:14:48,581 THAT'S BUILT IN TO OUR 1878 01:14:48,581 --> 01:14:49,748 AGREEMENTS. 1879 01:14:49,748 --> 01:14:52,251 FOR A PROGRAM LIKE LIGHT AND 1880 01:14:52,251 --> 01:14:53,719 GLIDE IT'S EARLY THE END GOAL 1881 01:14:53,719 --> 01:14:55,654 MAY NOT BE SOMETHING FULLY 1882 01:14:55,654 --> 01:14:57,323 COMMERCIALIZABLE BECAUSE WE'RE 1883 01:14:57,323 --> 01:14:59,758 STARTING AT ZERO IN MANY CASES. 1884 01:14:59,758 --> 01:15:02,862 AND SOME MAY BE WILDLY 1885 01:15:02,862 --> 01:15:05,431 SUCCESSFUL AND COMMERCIALIZE AND 1886 01:15:05,431 --> 01:15:06,899 LICENSE OR MAKE A PRODUCT AT THE 1887 01:15:06,899 --> 01:15:08,767 END OF THE EFFORT OR IT MAY BE 1888 01:15:08,767 --> 01:15:13,772 SOME OF OUR GROUPS MAKE GREAT 1889 01:15:13,772 --> 01:15:15,341 SCIENTIFIC ADVANCES AND GO ON TO 1890 01:15:15,341 --> 01:15:17,843 BE OTHER MECHANISMS ACROSS THE 1891 01:15:17,843 --> 01:15:18,144 GOVERNMENT. 1892 01:15:18,144 --> 01:15:21,046 WHERE THAT LIVES FOR LYMPHATICS 1893 01:15:21,046 --> 01:15:22,848 IS DIFFICULT. 1894 01:15:22,848 --> 01:15:25,317 WE'RE HOPEFUL IN THE NEXT SIX 1895 01:15:25,317 --> 01:15:27,353 YEARS TO SHOW WHAT IS POSSIBLE 1896 01:15:27,353 --> 01:15:29,121 AND THERE WILL BE OTHER 1897 01:15:29,121 --> 01:15:30,256 OPPORTUNITIES. 1898 01:15:30,256 --> 01:15:35,327 >> SORRY, FOR CECELIA, BEYOND 1899 01:15:35,327 --> 01:15:40,766 PUBLICATIONS WHICH IS A VERY NIH 1900 01:15:40,766 --> 01:15:43,903 TYPE, HOW DOES MEDICAL 1901 01:15:43,903 --> 01:15:46,739 RESEARCH -- HOW DID DHA AND DAD 1902 01:15:46,739 --> 01:15:49,675 THINK OF THE SUCCESS AND OUTPUTS 1903 01:15:49,675 --> 01:15:51,477 OF THE CDMRP PROGRAM. 1904 01:15:51,477 --> 01:15:56,849 HOW DO YOU MEASURE SUCCESS AND 1905 01:15:56,849 --> 01:15:57,716 PROGRESS? 1906 01:15:57,716 --> 01:15:59,552 >> I THINK RETURN ON INVESTMENT 1907 01:15:59,552 --> 01:16:01,520 IS SOMETHING EVERY LARGE FUNDER 1908 01:16:01,520 --> 01:16:02,955 GOVERNMENT OR NOT GRAPPLES WITH. 1909 01:16:02,955 --> 01:16:05,991 IT'S VERY DIFFICULT FOR US TO 1910 01:16:05,991 --> 01:16:06,225 ASSESS. 1911 01:16:06,225 --> 01:16:12,932 FOR US WE'RE FAST PACED AND HAVE 1912 01:16:12,932 --> 01:16:14,333 HEIGHTENED POLITICAL AWARENESS. 1913 01:16:14,333 --> 01:16:16,702 WHAT WE MEASURE MOST IS HOW MUCH 1914 01:16:16,702 --> 01:16:20,773 WE INVEST THAT BECAME A 1915 01:16:20,773 --> 01:16:24,076 COMMERCIALIZED PRODUCT. 1916 01:16:24,076 --> 01:16:26,779 WE LOOKED AT THE APPROPRIATIONS 1917 01:16:26,779 --> 01:16:29,215 WE RECEIVED BEING OVER $1.5 1918 01:16:29,215 --> 01:16:31,483 BILLION THROUGH THE 30 YEARS OF 1919 01:16:31,483 --> 01:16:34,553 PROGRAM ON A DEEP DIVE AND WERE 1920 01:16:34,553 --> 01:16:37,423 ABLE TO DETERMINE HOW MANY 1921 01:16:37,423 --> 01:16:38,691 PRODUCTS AND WHAT WAS OUR 1922 01:16:38,691 --> 01:16:39,792 CONTRIBUTION TO THE SUCCESS. 1923 01:16:39,792 --> 01:16:44,363 THAT SERVED AS A VERY USEFUL 1924 01:16:44,363 --> 01:16:45,097 EXERCISE. 1925 01:16:45,097 --> 01:16:48,767 WE WERE ABLE TO SEE THE FUNDING 1926 01:16:48,767 --> 01:16:52,004 VEHICLES TO PRODUCE PRODUCTS. 1927 01:16:52,004 --> 01:16:55,107 AND THAT HAS LED INTO A HUGE 1928 01:16:55,107 --> 01:16:56,675 UNDERTAKING THROUGHOUT THE 1929 01:16:56,675 --> 01:16:57,009 ORGANIZATION. 1930 01:16:57,009 --> 01:16:59,144 HOW CAN WE BE MORE EFFECTIVE AND 1931 01:16:59,144 --> 01:17:01,513 FUND A PATENT OR IND FOR LESS 1932 01:17:01,513 --> 01:17:03,482 RESOURCES AND GET MORE BANG FOR 1933 01:17:03,482 --> 01:17:04,016 YOUR BUCK? 1934 01:17:04,016 --> 01:17:06,485 THAT'S WHAT WE'RE LOOKING AT. 1935 01:17:06,485 --> 01:17:08,520 OUR ADVOCACY GROUPS ASK HOW DID 1936 01:17:08,520 --> 01:17:11,090 YOU CONTRIBUTE, WHAT TYPE OF 1937 01:17:11,090 --> 01:17:12,791 PRODUCT AND ABOUT WHAT IS 1938 01:17:12,791 --> 01:17:13,826 SPECIALIZED FOR THE PROGRAMS AND 1939 01:17:13,826 --> 01:17:16,262 NOW WE ARE AT A POINT WHERE WE 1940 01:17:16,262 --> 01:17:18,864 HAVE A LOT OF FAST DATA AND WE 1941 01:17:18,864 --> 01:17:20,766 CAN SEE HOW SUCCESSFUL WERE WE 1942 01:17:20,766 --> 01:17:23,035 AND WITH THAT WE START SEEING 1943 01:17:23,035 --> 01:17:24,937 TRENDS OF WHICH AWARD MECHANISM, 1944 01:17:24,937 --> 01:17:27,306 WHICH FUNDING VEHICLE IS GOING 1945 01:17:27,306 --> 01:17:34,747 TO GENERATE BETTER RESULTS. 1946 01:17:34,747 --> 01:17:38,651 >> I SUPPORT ARPA-H. 1947 01:17:38,651 --> 01:17:43,222 I WAS CURIOUS ABOUT THE 1948 01:17:43,222 --> 01:17:44,757 ANNOUNCEMENT MECHANISM. 1949 01:17:44,757 --> 01:17:46,792 THIS I NEVER HEARD BEFORE. 1950 01:17:46,792 --> 01:17:48,060 I KNOW MANY COLLEAGUES AND I 1951 01:17:48,060 --> 01:17:51,697 THINK THIS TYPE OF PROGRAM IS 1952 01:17:51,697 --> 01:17:56,835 IDEAL FOR MORE PEOPLE IN THE 1953 01:17:56,835 --> 01:17:59,338 FIELD AND DIVERSE KNOWLEDGE BUT 1954 01:17:59,338 --> 01:18:04,777 I DON'T KNOW WHAT IS THE 1955 01:18:04,777 --> 01:18:06,545 MECHANISM YOU SEND THESE 1956 01:18:06,545 --> 01:18:08,781 ANNOUNCEMENTS. 1957 01:18:08,781 --> 01:18:09,181 HOW DOES IT WORK? 1958 01:18:09,181 --> 01:18:14,219 HOW DO YOU SEND IT? 1959 01:18:14,219 --> 01:18:21,026 >> SO EVERYTHING IS ANNOUNCED 1960 01:18:21,026 --> 01:18:21,327 PUBLICALLY. 1961 01:18:21,327 --> 01:18:23,696 ALL CALLS FOR PROPOSALS. 1962 01:18:23,696 --> 01:18:25,030 OUR GLIDE PROGRAM IS JUST 1963 01:18:25,030 --> 01:18:25,297 STARTING. 1964 01:18:25,297 --> 01:18:27,166 SO TOMORROW IS THE FIRST DAY SO 1965 01:18:27,166 --> 01:18:28,634 YOU'RE NOT TOO LATE. 1966 01:18:28,634 --> 01:18:30,169 IT'S VIRTUAL. 1967 01:18:30,169 --> 01:18:31,503 I DON'T EXPECT US TO FLY WITH US 1968 01:18:31,503 --> 01:18:34,340 IF YOU DON'T WANT TO BUT WE HAVE 1969 01:18:34,340 --> 01:18:36,775 A VIRTUAL PROPOSAL TO HEAR 1970 01:18:36,775 --> 01:18:38,977 DIRECTLY FROM KIMBERLY WHAT SHE 1971 01:18:38,977 --> 01:18:42,214 WANTS IN HER PROGRAM. 1972 01:18:42,214 --> 01:18:43,982 THERE'S OPPORTUNITIES FOR PEOPLE 1973 01:18:43,982 --> 01:18:45,751 AND IT LAUNCHES TOMORROW. 1974 01:18:45,751 --> 01:18:47,553 THAT PROGRAM IS NEWLY LAUNCHES 1975 01:18:47,553 --> 01:18:48,754 AND I'M SURE WE CAN PROBABLY 1976 01:18:48,754 --> 01:18:50,122 SEND IT OUT IN REAL TIME RIGHT 1977 01:18:50,122 --> 01:18:51,457 NOW THE INFORMATION RELATED TO 1978 01:18:51,457 --> 01:18:53,525 IT BUT ALL OF OUR ANNOUNCEMENTS 1979 01:18:53,525 --> 01:18:57,963 ARE MADE THROUGH OUR WEBSITE 1980 01:18:57,963 --> 01:19:00,632 THROUGH SAM DOT-GOV. 1981 01:19:00,632 --> 01:19:02,434 I ADMIT MANY ENT DO KNOW ABOUT 1982 01:19:02,434 --> 01:19:03,902 ARPA-H OR THE MODEL AND TRYING 1983 01:19:03,902 --> 01:19:07,005 OUR BEST AND GO OUT AND TRY TO 1984 01:19:07,005 --> 01:19:08,107 ATTEND AS MANY MEETINGS AS 1985 01:19:08,107 --> 01:19:09,174 POSSIBLE TO MAKE PEOPLE AWARE OF 1986 01:19:09,174 --> 01:19:10,376 THE FACT WE EXIST. 1987 01:19:10,376 --> 01:19:12,244 I WILL SAY KIMBERLY AND HER TEAM 1988 01:19:12,244 --> 01:19:13,812 HAVE DONE A FANTASTIC JOB TRYING 1989 01:19:13,812 --> 01:19:17,750 TO MAKE THE FIELD AS AWARE AS 1990 01:19:17,750 --> 01:19:20,486 POSSIBLE BUT AGAIN I'LL AGREE 1991 01:19:20,486 --> 01:19:23,222 100% WE NEED HETEROGENEOUS TEAMS 1992 01:19:23,222 --> 01:19:25,591 TO SOLVE THE PROBLEMS AND IT'S 1993 01:19:25,591 --> 01:19:28,060 RARE IN ARPA-H YOU HAVE ONE P.I. 1994 01:19:28,060 --> 01:19:28,861 ON A GRANT. 1995 01:19:28,861 --> 01:19:30,996 THEY'RE ON A COOPERATIVE 1996 01:19:30,996 --> 01:19:34,733 AGREEMENT OR T32 OR LARGE 1997 01:19:34,733 --> 01:19:36,268 CONSORTIUMS OF 10 TEAM MEMBERS 1998 01:19:36,268 --> 01:19:38,804 OR MORE WORKING TO SOLVE THE 1999 01:19:38,804 --> 01:19:39,071 PROBLEM. 2000 01:19:39,071 --> 01:19:41,640 THAT'S WHAT WE'RE AIMING TO DO 2001 01:19:41,640 --> 01:19:45,677 WITH OUR PROPOSERS DAY AND HAVE 2002 01:19:45,677 --> 01:19:46,645 PEOPLE COME IN AND TELL PEOPLE 2003 01:19:46,645 --> 01:19:49,448 WHAT THEY WANT AND MOST IN THE 2004 01:19:49,448 --> 01:19:51,517 AUDIENCE WILL SAY WE CAN'T DO 2005 01:19:51,517 --> 01:19:54,586 THAT BUT AND WE KNOW THAT BUT IF 2006 01:19:54,586 --> 01:19:57,055 YOU GET 10 PEOPLE WITH DIFFERENT 2007 01:19:57,055 --> 01:19:59,324 EXPERTISE CAN YOU DO THIS SO 2008 01:19:59,324 --> 01:20:01,293 IT'S OUR ATTEMPT TO REACH OUT. 2009 01:20:01,293 --> 01:20:03,729 THE PEOPLE THAT WILL BE IN 2010 01:20:03,729 --> 01:20:04,897 ATTENDANCE TOMORROW ARE THE CORE 2011 01:20:04,897 --> 01:20:07,232 TEAMS AWARE OF WHAT WE'RE DOING 2012 01:20:07,232 --> 01:20:08,567 AND THEY'LL GO OUT IN THE 2013 01:20:08,567 --> 01:20:12,671 COMMUNITY LOOKING FOR OTHER 2014 01:20:12,671 --> 01:20:14,273 RESEARCHERS TO HELP ROUND OUT 2015 01:20:14,273 --> 01:20:16,074 THEIR TEAM AND HOPING TO BUILD A 2016 01:20:16,074 --> 01:20:16,375 NETWORK. 2017 01:20:16,375 --> 01:20:20,078 WE WOULD LOVE AND APPRECIATE ANY 2018 01:20:20,078 --> 01:20:22,014 HELP WE CAN TO GET INFORMATION 2019 01:20:22,014 --> 01:20:28,253 OUT BUT RELEASED ON SAM DOT GOT 2020 01:20:28,253 --> 01:20:33,725 WHERE WE SOLICIT. 2021 01:20:33,725 --> 01:20:42,100 >> [INAUDIBLE] 2022 01:20:42,100 --> 01:20:43,969 >> CAN I JUST JUMP IN REALLY 2023 01:20:43,969 --> 01:20:44,770 QUICKLY. 2024 01:20:44,770 --> 01:20:48,640 I THINK WHAT HAS BEEN SO 2025 01:20:48,640 --> 01:20:51,343 ENLIGHTENING FOR ME AS I GO OUT 2026 01:20:51,343 --> 01:20:53,245 TO SPEAK WITH PEOPLE OUTSIDE THE 2027 01:20:53,245 --> 01:20:57,749 LYMPHATIC COMMUNITY, AS WE TALK 2028 01:20:57,749 --> 01:20:59,551 ABOUT LYMPHATICS, LIKE A LIGHT 2029 01:20:59,551 --> 01:21:00,385 BULB GOES OFF. 2030 01:21:00,385 --> 01:21:03,755 MAYBE WE CAN TAKE OUR ENABLING 2031 01:21:03,755 --> 01:21:06,058 TECHNOLOGY AND PUT IT TOWARDS 2032 01:21:06,058 --> 01:21:08,160 THE LYMPHATIC SYSTEM AND IT'S 2033 01:21:08,160 --> 01:21:09,995 BEEN SO EXCITING. 2034 01:21:09,995 --> 01:21:15,200 WE NEED EVERYONE'S HELP TO GET 2035 01:21:15,200 --> 01:21:15,734 THE WORD OUT. 2036 01:21:15,734 --> 01:21:18,203 WE HAVE DONE THE BEST WE CAN TO 2037 01:21:18,203 --> 01:21:21,507 GET THE WORD OUT BUT ANY HELP IS 2038 01:21:21,507 --> 01:21:21,807 LIKE, YES. 2039 01:21:21,807 --> 01:21:25,077 BECAUSE AS WE TALK TO PEOPLE, SO 2040 01:21:25,077 --> 01:21:28,847 MANY ARE SAYING WELL, THIS IS SO 2041 01:21:28,847 --> 01:21:30,115 COOL. 2042 01:21:30,115 --> 01:21:31,817 WHY ARE WE NOT THINKING ABOUT 2043 01:21:31,817 --> 01:21:33,118 THE LYMPHATIC SYSTEM. 2044 01:21:33,118 --> 01:21:35,053 IT'S SO IMPORTANT. 2045 01:21:35,053 --> 01:21:37,055 IT'S BEEN HUGELY MOTIVATING TO 2046 01:21:37,055 --> 01:21:38,090 KNOW THAT THERE ARE PEOPLE OUT 2047 01:21:38,090 --> 01:21:40,459 THERE THAT WANT TO BRING THE 2048 01:21:40,459 --> 01:21:41,026 TECHNOLOGY IN. 2049 01:21:41,026 --> 01:21:43,962 THE OTHER THING I WOULD SAY IS 2050 01:21:43,962 --> 01:21:46,164 ON THE PROGRAM'S WEB PAGE, SO 2051 01:21:46,164 --> 01:21:48,000 EACH PROGRAM HAS A WEB PAGE, 2052 01:21:48,000 --> 01:21:51,003 THERE'S A MECHANISM CALLED THE 2053 01:21:51,003 --> 01:21:55,974 TEAMING PAGE WHERE YOU CAN PUT 2054 01:21:55,974 --> 01:21:57,376 DOWN YOUR TECHNOLOGY, YOUR 2055 01:21:57,376 --> 01:22:00,178 EXPERTISE AND THAT'S A WAY THAT 2056 01:22:00,178 --> 01:22:03,148 PEOPLE CAN REACH OUT AND FIND 2057 01:22:03,148 --> 01:22:05,951 TEAMS BUT THEN AGAIN THAT'S THE 2058 01:22:05,951 --> 01:22:07,553 OPPORTUNITY WITH ARPA-H IS WE'RE 2059 01:22:07,553 --> 01:22:08,153 LOOKING FOR TEAMS. 2060 01:22:08,153 --> 01:22:11,757 WE WANT PEOPLE TO COME IN 2061 01:22:11,757 --> 01:22:14,359 BECAUSE WE KNOW THIS IS REALLY 2062 01:22:14,359 --> 01:22:15,727 HARD AND WE NEED ALL HANDS ON 2063 01:22:15,727 --> 01:22:19,798 DECK. 2064 01:22:19,798 --> 01:22:21,767 >> THANK YOU SO MUCH. 2065 01:22:21,767 --> 01:22:23,535 SO MAYBE CONTINUING ON THE THEME 2066 01:22:23,535 --> 01:22:25,804 OF GETTING THE WORD OUT AND 2067 01:22:25,804 --> 01:22:27,639 GENERATING BETTER AWARENESS WE 2068 01:22:27,639 --> 01:22:31,143 HAD A NUMBER OF QUESTIONS FROM 2069 01:22:31,143 --> 01:22:33,378 OUR EDUCATIONAL IMPERATIVE 2070 01:22:33,378 --> 01:22:33,645 COMMITTEE. 2071 01:22:33,645 --> 01:22:36,748 WOULD SOMEONE LIKE TO ASK ONE OF 2072 01:22:36,748 --> 01:22:37,149 THESE QUESTIONS? 2073 01:22:37,149 --> 01:22:43,121 >> COULD YOU REPEAT THE 2074 01:22:43,121 --> 01:22:43,388 QUESTION? 2075 01:22:43,388 --> 01:22:45,190 I DIDN'T HEAR THE LAST PART. 2076 01:22:45,190 --> 01:22:46,558 >> LET ME STATE THE QUESTION. 2077 01:22:46,558 --> 01:22:50,529 WHAT EDUCATIONAL INITIATIVES 2078 01:22:50,529 --> 01:22:51,630 HAVE YOU FOUND TO BE MOST 2079 01:22:51,630 --> 01:22:53,031 SUCCESSFUL WITH PATIENTS, 2080 01:22:53,031 --> 01:22:54,266 RESEARCHERS, PHYSICIANS, ALL 2081 01:22:54,266 --> 01:22:56,768 STAKEHOLDERS FOR YOUR 2082 01:22:56,768 --> 01:23:02,574 ORGANIZATION? 2083 01:23:02,574 --> 01:23:04,443 >> I CAN START, IF YOU DON'T 2084 01:23:04,443 --> 01:23:04,743 MIND. 2085 01:23:04,743 --> 01:23:12,317 THIS IS DR. RICHARDSON FROM CDC. 2086 01:23:12,317 --> 01:23:14,519 ONE THING WE NOTICED WHEN WE 2087 01:23:14,519 --> 01:23:15,787 DEVELOP OUR CAMPAIGNS WE DO OR I 2088 01:23:15,787 --> 01:23:18,557 DON'T REALLY LIKE CAMPAIGNS BUT 2089 01:23:18,557 --> 01:23:20,025 CONGRESSES DO THEM SO WE DO 2090 01:23:20,025 --> 01:23:20,225 THEM. 2091 01:23:20,225 --> 01:23:22,995 WHAT WE TRY TO DO IS TRY TO GO 2092 01:23:22,995 --> 01:23:26,698 INTO THE COMMUNITY OF THE PEOPLE 2093 01:23:26,698 --> 01:23:27,599 IMPACTED BY THE THINK WE'VE BEEN 2094 01:23:27,599 --> 01:23:32,070 ASKED TO WORK ON TO SEE WHAT 2095 01:23:32,070 --> 01:23:33,739 THEIR EXPERIENCING IN WHATEVER 2096 01:23:33,739 --> 01:23:34,773 AREA IT IS. 2097 01:23:34,773 --> 01:23:37,643 FOR INSTANCE, LET'S SAY WE WERE 2098 01:23:37,643 --> 01:23:40,746 ABLE TO DO SOMETHING WITH 2099 01:23:40,746 --> 01:23:42,681 LYMPHEDEMA EDUCATION MORE 2100 01:23:42,681 --> 01:23:43,915 PURPOSEFUL THAN WHAT WE'RE DOING 2101 01:23:43,915 --> 01:23:45,283 NOW BUT IT'S ABOUT GOING IN 2102 01:23:45,283 --> 01:23:46,918 COMMUNITIES AND TALKING WITH 2103 01:23:46,918 --> 01:23:50,155 PEOPLE WHO HAVE IT AND THEIR 2104 01:23:50,155 --> 01:23:51,590 CAREGIVERS AS WELL. 2105 01:23:51,590 --> 01:23:52,924 THAT'S THE HIDDEN POPULATION 2106 01:23:52,924 --> 01:24:02,267 NOBODY EVER TALKS TO AND 2107 01:24:02,267 --> 01:24:04,169 DR. KENNEDY TALKS TO YOU AND 2108 01:24:04,169 --> 01:24:08,273 THAT'S HOW WE HANDLE IT AND LIKE 2109 01:24:08,273 --> 01:24:10,308 WHY DON'T OUR MESSAGES WORK AND 2110 01:24:10,308 --> 01:24:11,743 HOW DO WE BETTER RESONATE BETTER 2111 01:24:11,743 --> 01:24:17,449 WITH THE PUBLIC AND PROVIDERS. 2112 01:24:17,449 --> 01:24:19,151 AND WE DON'T TALK TO THE PEOPLE 2113 01:24:19,151 --> 01:24:21,053 IMPACTED BY THE THING WE WANTED 2114 01:24:21,053 --> 01:24:21,586 TO HELP WITH. 2115 01:24:21,586 --> 01:24:24,623 THAT'S WHAT WE TRY TO DO AT 2116 01:24:24,623 --> 01:24:25,524 INCREDIBLE AS MUCH AS WE CAN AND 2117 01:24:25,524 --> 01:24:27,592 EVALUATE WHAT YOU DO TO THE 2118 01:24:27,592 --> 01:24:28,527 POINT THE QUESTION BEFORE I WAS 2119 01:24:28,527 --> 01:24:34,766 GOING TO IT RAISE MY HAND, WE 2120 01:24:34,766 --> 01:24:42,507 DON'T THROW INFORMATION LIKELOO 2121 01:24:42,507 --> 01:24:44,443 LIKE JELLO ON A WALL AND WE TRY 2122 01:24:44,443 --> 01:24:46,678 TO EVALUATE WHETHER IT WORKED OR 2123 01:24:46,678 --> 01:24:53,518 NOT BECAUSE IF IT DOESN'T WORK 2124 01:24:53,518 --> 01:24:55,654 YOU NEED TO STOP DOING IT AND DO 2125 01:24:55,654 --> 01:24:56,188 SOMETHING ELSE. 2126 01:24:56,188 --> 01:25:00,158 >> I'LL DOUBLE DOWN ON WHAT LISA 2127 01:25:00,158 --> 01:25:00,358 SAYS. 2128 01:25:00,358 --> 01:25:04,096 WE HAVE A VERY ROBUST 2129 01:25:04,096 --> 01:25:04,696 PERFORMANCE MEASUREMENT AND 2130 01:25:04,696 --> 01:25:07,332 SYSTEM FOR OUR BILLIONS IN 2131 01:25:07,332 --> 01:25:08,366 EDUCATIONAL AND TRAINING GRANTS. 2132 01:25:08,366 --> 01:25:12,471 WHAT WE HAVE ALSO FOUND MOST 2133 01:25:12,471 --> 01:25:13,438 IMPACTFUL IS WHEN YOU ARE 2134 01:25:13,438 --> 01:25:15,273 TRAINING HEALTH CARE WORKERS, 2135 01:25:15,273 --> 01:25:16,141 WRIT LARGE IN THE COMMUNITY. 2136 01:25:16,141 --> 01:25:18,643 IN THE COMMUNITIES, TALKING TO 2137 01:25:18,643 --> 01:25:20,779 PEOPLE IN THIS CASE IF YOU'RE 2138 01:25:20,779 --> 01:25:26,284 TALKING ABOUT LYMPHATICS, GO TO 2139 01:25:26,284 --> 01:25:29,955 THE PLACES AND WHERE YOU'LL FIND 2140 01:25:29,955 --> 01:25:31,656 PROVIDERS AND WHEN YOU ARE 2141 01:25:31,656 --> 01:25:33,291 TRAINING THOSE PROVIDERS AS 2142 01:25:33,291 --> 01:25:34,459 RESEARCHERS IN THOSE 2143 01:25:34,459 --> 01:25:39,765 COMMUNITIES, THEY ARE MORE 2144 01:25:39,765 --> 01:25:44,770 LIKELY TO STAY THERE SO THAT'S 2145 01:25:44,770 --> 01:25:46,638 IMPORTANT TO REMEMBER. 2146 01:25:46,638 --> 01:25:48,974 >> THIS IS JORDAN POMEROY FROM 2147 01:25:48,974 --> 01:25:49,608 THE FDA. 2148 01:25:49,608 --> 01:25:51,543 WHILE NOT COMPLETELY ON TOPIC 2149 01:25:51,543 --> 01:25:53,044 WITH THE EDUCATION PIECE I THINK 2150 01:25:53,044 --> 01:25:54,613 IT'S IMPORTANT FROM OUR 2151 01:25:54,613 --> 01:25:56,081 PERSPECTIVE AS WE THINK ABOUT 2152 01:25:56,081 --> 01:25:58,116 GENERATION OF SUBSTANTIAL 2153 01:25:58,116 --> 01:26:01,787 EVIDENCE AND EFFECTIVENESS OF 2154 01:26:01,787 --> 01:26:03,755 THE REGULATORY SPACE OFTEN TIMES 2155 01:26:03,755 --> 01:26:05,290 FOR LYMPHATIC DISEASES MAY NOT 2156 01:26:05,290 --> 01:26:07,559 BE CLEAR CLINICAL OUTCOMES THAT 2157 01:26:07,559 --> 01:26:12,764 CAN BE USED FOR DEVELOPING 2158 01:26:12,764 --> 01:26:14,666 REGULATORY STANDARD 2159 01:26:14,666 --> 01:26:16,668 UNDERSTANDING SUBSTANTIAL ITEMS 2160 01:26:16,668 --> 01:26:18,937 AND WE RECOMMEND YOU LISTEN TO 2161 01:26:18,937 --> 01:26:21,807 THOSE COMMUNITY TO DEVELOP AN 2162 01:26:21,807 --> 01:26:24,042 UNDERSTANDING OF WHAT'S 2163 01:26:24,042 --> 01:26:25,811 IMPORTANT FROM A SYMPTOMATIC AND 2164 01:26:25,811 --> 01:26:26,745 FUNCTIONAL BENEFITS. 2165 01:26:26,745 --> 01:26:28,413 AT SOME POINT WE'RE LIKELY TO 2166 01:26:28,413 --> 01:26:30,282 ASK YOU TO QUANTIFY THAT 2167 01:26:30,282 --> 01:26:31,783 IMPORTANCE IN A WAY THROUGH A 2168 01:26:31,783 --> 01:26:34,152 PATIENT-REPORTED OUTCOME OR 2169 01:26:34,152 --> 01:26:36,588 CLINICAL OUTCOME ASSESSMENT SO 2170 01:26:36,588 --> 01:26:40,292 WE CAN HAVE DATA BY WHICH TO 2171 01:26:40,292 --> 01:26:41,660 TEASE OUR REGULATORY STANDARD. 2172 01:26:41,660 --> 01:26:47,332 NOT ONLY EDUCATING THE PROVIDERS 2173 01:26:47,332 --> 01:26:48,333 BUT PROVIDING THE TOOLS. 2174 01:26:48,333 --> 01:26:51,369 >> TO PIGGY BACK OFF WHAT JORDAN 2175 01:26:51,369 --> 01:26:52,571 MENTIONED, THE FDA AS FAR AS A 2176 01:26:52,571 --> 01:26:54,673 PROGRAM FOR PATIENT-FOCUSSED 2177 01:26:54,673 --> 01:26:55,540 DRUG DEVELOPMENT. 2178 01:26:55,540 --> 01:26:57,475 I ENCOURAGE ANYONE INTERESTED IN 2179 01:26:57,475 --> 01:26:59,778 THE THINGS HE MENTIONED SUCH AS 2180 01:26:59,778 --> 01:27:01,813 CLINICAL OUTCOME ASSESSMENTS WE 2181 01:27:01,813 --> 01:27:04,216 CAN OFFER PATIENT LISTENING 2182 01:27:04,216 --> 01:27:05,250 SESSIONS DESIGN FOR SMALL 2183 01:27:05,250 --> 01:27:06,618 PATIENT POPULATION TO FIND OUT 2184 01:27:06,618 --> 01:27:07,752 WHAT'S OF IMPORTANCE IN TERMS OF 2185 01:27:07,752 --> 01:27:09,154 CLINICAL BENEFIT FOR THEM AND 2186 01:27:09,154 --> 01:27:11,556 HOW DO YOU MEASURE THAT IN A 2187 01:27:11,556 --> 01:27:12,691 DEVELOPMENT PROGRAM. 2188 01:27:12,691 --> 01:27:15,794 THERE ARE OTHER OPPORTUNITIES AS 2189 01:27:15,794 --> 01:27:21,800 WELL SO IT'S ALWAYS A RESEARCH 2190 01:27:21,800 --> 01:27:22,067 COMMUNITY. 2191 01:27:22,067 --> 01:27:24,803 >> THAT'S EXACTLY WHAT I WAS 2192 01:27:24,803 --> 01:27:28,874 GOING TO ASK. 2193 01:27:28,874 --> 01:27:32,777 GIVEN LYMPHEDEMA IS THOUGHT OF 2194 01:27:32,777 --> 01:27:34,980 AS INCREASED VOLUME BUT THE 2195 01:27:34,980 --> 01:27:37,282 SYMPTOMS ARE NOT RELATED TO THAT 2196 01:27:37,282 --> 01:27:39,150 AND DOES THE FDA CONSIDER 2197 01:27:39,150 --> 01:27:40,185 PATIENT-REPORTED OUTCOMES IN ITS 2198 01:27:40,185 --> 01:27:42,087 DECISIONS OF APPROVING NEW DRUGS 2199 01:27:42,087 --> 01:27:45,023 GIVEN WE DON'T HAVE VERY GOOD 2200 01:27:45,023 --> 01:27:48,360 TOOLS AND MEASURING DIRECTLY THE 2201 01:27:48,360 --> 01:27:49,461 LYMPHATIC FUNCTION. 2202 01:27:49,461 --> 01:27:54,532 >> SO, YES, DEFINITELY. 2203 01:27:54,532 --> 01:27:56,268 PATIENT-REPORTED OUTCOMES HAVE 2204 01:27:56,268 --> 01:28:02,207 PRECEDENT FOR RECT -- 2205 01:28:02,207 --> 01:28:03,575 REGULATORY APPROVAL AND IT'S 2206 01:28:03,575 --> 01:28:04,242 IMPORTANT THROUGH THE 2207 01:28:04,242 --> 01:28:06,311 QUANTIFICATION WE UNDERSTAND 2208 01:28:06,311 --> 01:28:08,546 WHAT THE CLINICAL MEANINGFULNESS 2209 01:28:08,546 --> 01:28:10,048 OF ANY DESCRIBED CHANGE OR 2210 01:28:10,048 --> 01:28:12,918 SCORING TOOL YOU DEVELOP. 2211 01:28:12,918 --> 01:28:14,185 FOR RARE DISEASE, WHICH WE 2212 01:28:14,185 --> 01:28:16,755 DEFINE AS LESS THAN 200,000 2213 01:28:16,755 --> 01:28:18,857 CASES REPORTED PER YEAR, WE 2214 01:28:18,857 --> 01:28:21,559 DON'T FURTHER STRATIFY IT DOWN 2215 01:28:21,559 --> 01:28:24,429 TO ULTRA RARE BUT IN THAT SPACE 2216 01:28:24,429 --> 01:28:27,799 OFTEN TIMES THERE'S NOT A REAL 2217 01:28:27,799 --> 01:28:29,567 WEALTH OF INFORMATION ABOUT 2218 01:28:29,567 --> 01:28:32,504 CLINICAL OUTCOMES OR SOMETHING 2219 01:28:32,504 --> 01:28:40,745 RESOLVED IN A TEMPORALLY SHORT 2220 01:28:40,745 --> 01:28:42,047 MANNER AND EARLY ENGAGEMENT IS 2221 01:28:42,047 --> 01:28:45,050 IMPORTANT BECAUSE OFTEN YOU HAVE 2222 01:28:45,050 --> 01:28:50,322 TO PROVIDER VALIDATION OF THE 2223 01:28:50,322 --> 01:28:54,125 FIT FOR PURPOSE AND THAT OF 2224 01:28:54,125 --> 01:28:57,362 COURSE COMES WITH RISK AND SO WE 2225 01:28:57,362 --> 01:28:59,798 HAVE BOTH IN PATIENT FOR DRUG 2226 01:28:59,798 --> 01:29:02,367 DEVELOPMENT AND CLINICAL OUTCOME 2227 01:29:02,367 --> 01:29:03,768 ASSESSMENT TEAMS WITHIN THE FDA 2228 01:29:03,768 --> 01:29:05,470 AND OFFICE OF NEW DRUGS EXPERTS 2229 01:29:05,470 --> 01:29:07,806 IN THE DEVELOPMENT OF THESE 2230 01:29:07,806 --> 01:29:09,474 TOOLS WE ENGAGE THEM AT THE TIME 2231 01:29:09,474 --> 01:29:16,781 WE'RE OF ENGAGING TO ASSIST WIT 2232 01:29:16,781 --> 01:29:18,316 THE DEVELOPMENT OF IT. 2233 01:29:18,316 --> 01:29:23,888 >> DO THOSE FOLKS PUBLIC 2234 01:29:23,888 --> 01:29:24,589 GUIDELINES ON WHAT THEY CONSIDER 2235 01:29:24,589 --> 01:29:34,632 A MEANS OF LOOKING AT THIS OFFER 2236 01:29:34,632 --> 01:29:35,533 QUANTIFYING. 2237 01:29:35,533 --> 01:29:37,802 >> ANY BACKGROUND IS IN ONCOLOGY 2238 01:29:37,802 --> 01:29:41,506 AND NOT A SPECIALIST IN RARE 2239 01:29:41,506 --> 01:29:46,077 DISEASES LIKE THE REST OF THE 2240 01:29:46,077 --> 01:29:49,080 GROUP BUT I WOULD AND THIS IS 2241 01:29:49,080 --> 01:29:51,850 FOR THE OVERGROWTH SPECTRUM 2242 01:29:51,850 --> 01:29:54,219 WHICH CAN HAVE A COMPONENT OF 2243 01:29:54,219 --> 01:29:56,688 LYMPHATIC MALFORMATION. 2244 01:29:56,688 --> 01:29:59,257 WE'VE BEEN TALKING ABOUT 2245 01:29:59,257 --> 01:30:03,094 LYMPHEDEMA BUT WITH RESPECT TO 2246 01:30:03,094 --> 01:30:04,763 LYMPHATIC DISEASE AS A WHOLE 2247 01:30:04,763 --> 01:30:07,432 THERE'S HETEROGENEITY AND HOW DO 2248 01:30:07,432 --> 01:30:08,400 YOU MEASURE AND WHAT'S 2249 01:30:08,400 --> 01:30:09,534 IMPORTANT. 2250 01:30:09,534 --> 01:30:11,736 TO DOUBLE DOWN ON WHAT JORDAN 2251 01:30:11,736 --> 01:30:13,905 WAS MENTIONING IT'S IMPORTANT TO 2252 01:30:13,905 --> 01:30:15,273 ENGAGE WITH THE REVIEW DIVISION 2253 01:30:15,273 --> 01:30:16,374 EARLY AND OFTEN. 2254 01:30:16,374 --> 01:30:19,210 WHAT WE WILL CONSIDER IN OUR 2255 01:30:19,210 --> 01:30:20,745 DISCUSSIONS WITH SPONSORS AND 2256 01:30:20,745 --> 01:30:21,379 INVESTIGATORS INCLUDE THINGS 2257 01:30:21,379 --> 01:30:23,148 SUCH AS CLINICAL CONTEXT AND 2258 01:30:23,148 --> 01:30:24,582 NATURAL HISTORY OF THE DISEASE 2259 01:30:24,582 --> 01:30:26,451 AND WHAT ARE THE AVAILABLE 2260 01:30:26,451 --> 01:30:27,352 THERAPIES, ETCETERA. 2261 01:30:27,352 --> 01:30:31,089 THE MAIN MESSAGE WOULD BE FOR 2262 01:30:31,089 --> 01:30:32,257 SMALL PATIENT POPULATION ARE 2263 01:30:32,257 --> 01:30:35,393 DEALING WITH COMPLEX OR ATYPICAL 2264 01:30:35,393 --> 01:30:37,662 GROWTH PATTERNS TO ENGAGE EARLY 2265 01:30:37,662 --> 01:30:40,231 FOR THE PROGRAM I MENTIONED. 2266 01:30:40,231 --> 01:30:44,769 I'VE WORKED WITH THE DRUG 2267 01:30:44,769 --> 01:30:47,172 DEVELOPMENT FOR PATIENTS WITH 2268 01:30:47,172 --> 01:30:52,277 PROSE AND UP IN THAT POPULATION 2269 01:30:52,277 --> 01:30:55,747 WITH RESPECT TO PATIENTS WE HAD 2270 01:30:55,747 --> 01:30:57,282 ADDITIONAL DATA IN PHYSICIAN 2271 01:30:57,282 --> 01:31:00,652 REPORTED OUTCOMES WHICH WAS 2272 01:31:00,652 --> 01:31:04,422 HELPFUL IN CORROBORATING WHAT WE 2273 01:31:04,422 --> 01:31:06,558 WERE SEEING IN LESION SHRINKAGE. 2274 01:31:06,558 --> 01:31:08,126 THERE WAS FLEXIBILITY EXERCISE 2275 01:31:08,126 --> 01:31:09,561 IN THE PRIMARY END POINT GIVEN 2276 01:31:09,561 --> 01:31:12,197 THE COMPLEXITIES GIVEN AND THE 2277 01:31:12,197 --> 01:31:18,536 FACT PROSE IS A AHISTO 2278 01:31:18,536 --> 01:31:20,772 LOGICALLY BENIGN PRODUCTION AND 2279 01:31:20,772 --> 01:31:26,344 LOOKED AT THE MESHABLE -- 2280 01:31:26,344 --> 01:31:28,012 MEASURABLE LESIONS AND IT WAS 2281 01:31:28,012 --> 01:31:30,482 ESTABLISHED BEFORE THEY PURSUED 2282 01:31:30,482 --> 01:31:33,084 THEIR PROGRAM AND WE ALSO HAD IN 2283 01:31:33,084 --> 01:31:38,990 THE SIMILAR DISEASE SPACE THE 2284 01:31:38,990 --> 01:31:40,325 MUTOSIS SPACE WE HAD PREVIOUS 2285 01:31:40,325 --> 01:31:44,562 EXPERIENCE SO TAKING THE 2286 01:31:44,562 --> 01:31:47,832 VOLUMETRIC LESION SHRINKAGE 2287 01:31:47,832 --> 01:31:49,868 COUPLED WITH ADDITIONAL 2288 01:31:49,868 --> 01:31:51,069 PHYSICIAN-REPORTED DATA WAS 2289 01:31:51,069 --> 01:31:52,937 EXTREMELY HELPFUL IN 2290 01:31:52,937 --> 01:31:55,340 SUPPLEMENTING THE IMAGE BASED 2291 01:31:55,340 --> 01:31:57,008 RESPONSE AND ASSESSMENT OF 2292 01:31:57,008 --> 01:31:58,743 EFFICACY GIVEN THE HETEROGENEITY 2293 01:31:58,743 --> 01:32:01,379 IN THE PHENOTYPE OF PATIENTS ONE 2294 01:32:01,379 --> 01:32:03,848 THIS PROSE AND THAT MAY BE 2295 01:32:03,848 --> 01:32:05,984 APPLICABLE TO OTHER LYMPHATIC 2296 01:32:05,984 --> 01:32:08,753 DISEASES AS WELL. 2297 01:32:08,753 --> 01:32:09,521 I'LL STOP THERE. 2298 01:32:09,521 --> 01:32:14,125 >> I HAVE ONE FOLLOW-ON 2299 01:32:14,125 --> 01:32:17,695 QUESTION, TO WHAT YOU WERE 2300 01:32:17,695 --> 01:32:18,029 TALKING ABOUT. 2301 01:32:18,029 --> 01:32:23,201 WITH LYMPHEDEMA WE HAVE AN 2302 01:32:23,201 --> 01:32:25,703 UNUSUAL SITUATION WHERE IT NOT A 2303 01:32:25,703 --> 01:32:27,105 RARE DISORDER BUT DON'T HAVE 2304 01:32:27,105 --> 01:32:30,041 GREAT OBJECTIVE METRICS 2305 01:32:30,041 --> 01:32:30,842 PARTICULARLY TO RELATE TO 2306 01:32:30,842 --> 01:32:31,709 THERAPEUTIC RESPONSE. 2307 01:32:31,709 --> 01:32:35,747 AND ONE OF THE BIG PROBLEMS IS 2308 01:32:35,747 --> 01:32:39,851 THAT HISTORICALLY ENSHRINED IN 2309 01:32:39,851 --> 01:32:42,921 THE LYMPHEDEMA LITERATURE IS 2310 01:32:42,921 --> 01:32:44,155 PHYSICAL MEASURES AND THE SIGNAL 2311 01:32:44,155 --> 01:32:47,325 TO NOISE RATIO THERE IS 2312 01:32:47,325 --> 01:32:48,393 PROBLEMAT EC IN TRACKING 2313 01:32:48,393 --> 01:32:50,562 THERAPEUTICS. 2314 01:32:50,562 --> 01:32:52,764 THAT WAS A BIG INTRODUCTION TO 2315 01:32:52,764 --> 01:32:55,934 ASK WOULD THE FDA BE OPEN TO NEW 2316 01:32:55,934 --> 01:32:57,402 METRICS EVEN IF THEY'RE NOT 2317 01:32:57,402 --> 01:32:59,204 HISTORICALLY ENSHRINED IN THE 2318 01:32:59,204 --> 01:33:00,538 EXISTING LITERATURE IF THEY'RE 2319 01:33:00,538 --> 01:33:04,742 DEVELOPED TO BE MORE SENSITIVE 2320 01:33:04,742 --> 01:33:08,379 TO THERAPEUTIC RESPONSE AND 2321 01:33:08,379 --> 01:33:09,981 TREATMENTS LIKE THAT. 2322 01:33:09,981 --> 01:33:13,418 >> UNDERSTANDING THE FDA BASED 2323 01:33:13,418 --> 01:33:15,887 ON ITS STATUTORY AND REGULATORY 2324 01:33:15,887 --> 01:33:18,590 RESPONSIBILITIES WE HAVE WE HAVE 2325 01:33:18,590 --> 01:33:22,393 TO GAUGE ON HOW IT MAY HELP THE 2326 01:33:22,393 --> 01:33:24,896 PATIENT FEEL FUNCTION OR SURVIVE 2327 01:33:24,896 --> 01:33:25,129 BETTER. 2328 01:33:25,129 --> 01:33:28,600 WHAT'S NOT BUILD IN TO THAT IS 2329 01:33:28,600 --> 01:33:31,536 THINGS THAT ARE PHARMACO DYNAMIC 2330 01:33:31,536 --> 01:33:32,770 MEASURES AND IMAGING 2331 01:33:32,770 --> 01:33:34,405 TECHNOLOGIES AND MEASUREMENTS OF 2332 01:33:34,405 --> 01:33:36,107 VOLUMES AND CHANGES OF VOLUMES 2333 01:33:36,107 --> 01:33:38,376 ARE NOT NECESSARILY DIRECTLY 2334 01:33:38,376 --> 01:33:41,346 CONNECTED TO PATIENT FEELING OR 2335 01:33:41,346 --> 01:33:43,681 FUNCTIONING OR SURVIVING BETTER. 2336 01:33:43,681 --> 01:33:45,149 GIVEN WE'RE LIKELY TALKING ABOUT 2337 01:33:45,149 --> 01:33:48,553 SYMPTOMATIC AND/OR FUNCTIONAL 2338 01:33:48,553 --> 01:33:50,021 BENEFITS HERE, THAT'S WHERE YOU 2339 01:33:50,021 --> 01:33:52,757 CAN USE THAT DATA TO SUPPLEMENT 2340 01:33:52,757 --> 01:33:55,960 A TOOL YOU BUILD AROUND THE 2341 01:33:55,960 --> 01:33:58,229 SYMPTOMATIC AND FUNCTIONAL 2342 01:33:58,229 --> 01:34:01,165 BENEFITS THROUGH A PRO OR ACRA. 2343 01:34:01,165 --> 01:34:07,138 WE DO LOOK APT -- AT THAT 2344 01:34:07,138 --> 01:34:12,777 EVIDENT AND SUPPORTED OR 2345 01:34:12,777 --> 01:34:17,649 CONFIRMATORY EVIDENCE THAT CAN 2346 01:34:17,649 --> 01:34:19,784 BE POWERFUL AS DR. SINGH HAD 2347 01:34:19,784 --> 01:34:22,553 SAID IN DETERMINING WHAT WOULD 2348 01:34:22,553 --> 01:34:25,757 LEAD TO SUBSTANTIAL EVIDENCE AND 2349 01:34:25,757 --> 01:34:28,760 EFFECTIVENESS AND DETERMINATION 2350 01:34:28,760 --> 01:34:30,895 TO FOLLOW ALONG, FDA HAS A 2351 01:34:30,895 --> 01:34:32,530 WEALTH OF GUIDANCE FOR 2352 01:34:32,530 --> 01:34:33,965 INDUSTRIES WE PUBLISH THAT ARE 2353 01:34:33,965 --> 01:34:35,900 PUBLICALLY AVAILABLE. 2354 01:34:35,900 --> 01:34:39,037 I RECOMMEND EVERYONE TAKES A 2355 01:34:39,037 --> 01:34:41,739 LOOK AT THOSE INCLUDING THE 2356 01:34:41,739 --> 01:34:42,774 SUBSTANTIAL EVIDENCE AND 2357 01:34:42,774 --> 01:34:44,108 EFFECTIVENESS FOR LOOKING AT ONE 2358 01:34:44,108 --> 01:34:45,677 ADEQUATE AND WELL CONTROLLED 2359 01:34:45,677 --> 01:34:51,349 STUDY WHICH IS PREDICATED ON 2360 01:34:51,349 --> 01:34:52,750 CONFIRMATORY EVIDENCE AND SOME 2361 01:34:52,750 --> 01:34:56,054 OF THAT DATA CAN SERVE AS 2362 01:34:56,054 --> 01:34:57,789 CONFIRMATORY EVIDENCE TO SUPPORT 2363 01:34:57,789 --> 01:34:59,457 OUR UNDERSTANDING OF THE 2364 01:34:59,457 --> 01:35:03,027 SYMPTOMATIC BENEFIT AND THERE'S 2365 01:35:03,027 --> 01:35:04,929 GUIDANCE ON CLINICAL OUTCOME 2366 01:35:04,929 --> 01:35:06,230 ASSESSMENT TOOLS AND SOME ARE 2367 01:35:06,230 --> 01:35:08,066 SPECIFIC TO THE TYPE OF 2368 01:35:08,066 --> 01:35:08,733 THERAPEUTIC OR TREATMENT OPTION 2369 01:35:08,733 --> 01:35:10,768 WHETHER THAT'S THROUGH THE 2370 01:35:10,768 --> 01:35:13,137 CENTER FOR DEVICES AND RADIO 2371 01:35:13,137 --> 01:35:15,506 LOGIC HEALTH FOR THE CENTER 2372 01:35:15,506 --> 01:35:16,908 THROUGH DRUG EVALUATION RESEARCH 2373 01:35:16,908 --> 01:35:19,243 OR BIOLOGICS AND RESEARCH WHICH 2374 01:35:19,243 --> 01:35:20,645 ARE MORE MARRIED IN TERMS OF HOW 2375 01:35:20,645 --> 01:35:25,783 THE GUIDANCES ARE BUILT. 2376 01:35:25,783 --> 01:35:30,655 >> DR. RICHARDSON, WE SEE YOUR 2377 01:35:30,655 --> 01:35:32,090 HAND UP. 2378 01:35:32,090 --> 01:35:33,291 >> JORDAN SAID ALMOST EVERYTHING 2379 01:35:33,291 --> 01:35:34,025 I WANTED TO SAY. 2380 01:35:34,025 --> 01:35:36,060 ONE THING WE HAVE TO REMEMBER IS 2381 01:35:36,060 --> 01:35:37,195 REGARDLESS OF WHETHER THE TEST 2382 01:35:37,195 --> 01:35:39,831 CHANGES OR NOT HOW DOES THE 2383 01:35:39,831 --> 01:35:41,232 PERSON FEEL WITH THE CONDITION 2384 01:35:41,232 --> 01:35:42,333 WHO IS BEING TREATED. 2385 01:35:42,333 --> 01:35:43,968 I THINK ONE OF THE REASONS WE 2386 01:35:43,968 --> 01:35:46,537 HAD SUCH A HARD TIME GETTING 2387 01:35:46,537 --> 01:35:49,941 TRACTION ON OUR HEALTH AND WELL 2388 01:35:49,941 --> 01:35:53,277 BEING AND PRIORITY WITH CANCER 2389 01:35:53,277 --> 01:35:55,446 SURVIVORS, THERE'S ALMOST ALL 2390 01:35:55,446 --> 01:35:56,647 SELF-REPORT. 2391 01:35:56,647 --> 01:35:58,149 SO WHEN PEOPLE TELL US THINGS WE 2392 01:35:58,149 --> 01:35:59,717 HAVE TO BELIEVE THEM AND AT 2393 01:35:59,717 --> 01:36:01,486 TIMES IF WE DON'T HAVE A QUOTE, 2394 01:36:01,486 --> 01:36:03,654 UNQUOTE, HARD OUTCOME SOMETIMES 2395 01:36:03,654 --> 01:36:05,189 WE DON'T BELIEVE PEOPLE AND WHAT 2396 01:36:05,189 --> 01:36:06,357 THEY'RE EXPERIENCING AND HOW 2397 01:36:06,357 --> 01:36:08,760 THEIR LIFE IS IMPACTED BY THE 2398 01:36:08,760 --> 01:36:11,262 CONDITION. 2399 01:36:11,262 --> 01:36:15,867 JUST TO REMEMBER THE PERSON'S 2400 01:36:15,867 --> 01:36:16,768 EXPERIENCES MAY BE MORE 2401 01:36:16,768 --> 01:36:17,935 IMPORTANT THAN OTHER THINGS 2402 01:36:17,935 --> 01:36:18,202 DISCUSSED. 2403 01:36:18,202 --> 01:36:20,772 >> THANK YOU FOR THE COMMENT. 2404 01:36:20,772 --> 01:36:22,607 WE APPRECIATE THAT. 2405 01:36:22,607 --> 01:36:24,675 OUR THIRD-PARTY COVERAGE 2406 01:36:24,675 --> 01:36:25,877 COMMITTEE HAD A NUMBER OF 2407 01:36:25,877 --> 01:36:27,445 QUESTIONS. 2408 01:36:27,445 --> 01:36:29,647 CAN I GET A REPRESENTATIVE FROM 2409 01:36:29,647 --> 01:36:31,182 THAT COMMITTEE TO ASK ONE OF WHY 2410 01:36:31,182 --> 01:36:31,582 YOU ARE QUESTIONS? 2411 01:36:31,582 --> 01:36:33,851 >> THOSE ARE QUESTIONS WE MUST 2412 01:36:33,851 --> 01:36:37,922 HAVE HAD. 2413 01:36:37,922 --> 01:36:39,857 >> TO OUR SCIENTIFIC ADVANCEMENT 2414 01:36:39,857 --> 01:36:40,491 COMMITTEE. 2415 01:36:40,491 --> 01:36:42,927 >> SO THANK YOU AND I JUST WANT 2416 01:36:42,927 --> 01:36:46,397 TO THANK EVERYONE FOR BEING HERE 2417 01:36:46,397 --> 01:36:47,365 AND CONTRIBUTING. 2418 01:36:47,365 --> 01:36:49,834 I'M GOING TO TRY TO SUMMARIZE 2419 01:36:49,834 --> 01:36:51,602 QUESTIONS AND STRUCK BY THE FACT 2420 01:36:51,602 --> 01:36:55,173 THE FEDERAL FUNDERS FOR 2421 01:36:55,173 --> 01:36:56,340 LYMPHATIC RESEARCH THE MAJOR 2422 01:36:56,340 --> 01:36:57,608 ONES ARE ALL HERE. 2423 01:36:57,608 --> 01:37:00,244 AS WE THINK ABOUT ONE OF OUR 2424 01:37:00,244 --> 01:37:02,613 GOALS AND CHARGES HERE IS TO 2425 01:37:02,613 --> 01:37:03,881 MAKE RECOMMENDATIONS AND WHAT 2426 01:37:03,881 --> 01:37:06,250 WE'VE SORT OF BEEN COALESCING 2427 01:37:06,250 --> 01:37:08,686 AROUND IS THE NEED FOR PERMANENT 2428 01:37:08,686 --> 01:37:09,854 RESEARCH INVESTMENT IN 2429 01:37:09,854 --> 01:37:11,289 LYMPHATICS. 2430 01:37:11,289 --> 01:37:15,593 AS I LOOK AT THE THREE 2431 01:37:15,593 --> 01:37:17,195 STRUCTURES FOR RESEARCH FUNDING 2432 01:37:17,195 --> 01:37:19,163 THAT ARE PRESENT HERE, WE CAN 2433 01:37:19,163 --> 01:37:21,866 SORT OF SEE PROS AND CONS. 2434 01:37:21,866 --> 01:37:23,067 WE'RE LOOKING FOR PERMANENCE. 2435 01:37:23,067 --> 01:37:26,604 WE'RE LOOK FOR MONEY DIRECTED 2436 01:37:26,604 --> 01:37:29,440 TOWARD A PROGRAM. 2437 01:37:29,440 --> 01:37:32,810 AND THE NIH IS NOT -- WE CAN'T 2438 01:37:32,810 --> 01:37:37,548 SAY NIH FUND LYMPHATIC RESEARCH 2439 01:37:37,548 --> 01:37:39,283 IT'S ALL GOING INTO POOLS AND 2440 01:37:39,283 --> 01:37:42,887 DOD HAS MORE OF THAT PROGRAM 2441 01:37:42,887 --> 01:37:44,755 ASPECT AND RELY ON CONGRESS TO 2442 01:37:44,755 --> 01:37:46,858 GIVE YOU THE BUDGET AND ARPA-H 2443 01:37:46,858 --> 01:37:48,893 IS TIME LIMITED. 2444 01:37:48,893 --> 01:37:51,329 I GUESS MY QUESTION IS AS WE SIT 2445 01:37:51,329 --> 01:37:54,265 WITH A VISION OF A PERMANENT 2446 01:37:54,265 --> 01:37:55,733 STRUCTURE FOR FUNDING LYMPHATIC 2447 01:37:55,733 --> 01:37:57,101 RESEARCH, WHAT ADVICE WOULD YOU 2448 01:37:57,101 --> 01:38:01,172 GIVE US, WHAT IDEAS DO YOU HAVE 2449 01:38:01,172 --> 01:38:01,439 FOR US? 2450 01:38:01,439 --> 01:38:08,779 DOES IT INCLUDE WORKING WITH 2451 01:38:08,779 --> 01:38:09,180 NONPROFITS? 2452 01:38:09,180 --> 01:38:11,082 WE'RE HOPING AND GRATEFUL FOR 2453 01:38:11,082 --> 01:38:12,049 ANY INPUT. 2454 01:38:12,049 --> 01:38:15,887 >> I THINK A REALLY IMPORTANT 2455 01:38:15,887 --> 01:38:23,728 THING IS DATA. 2456 01:38:23,728 --> 01:38:26,163 HOW ARE WE GOING TO ENSURE IT'S 2457 01:38:26,163 --> 01:38:27,131 A CENTRAL PLACE FOR EVIDENCE. 2458 01:38:27,131 --> 01:38:30,234 I WAS STRUCK WORKING ON THE 2459 01:38:30,234 --> 01:38:31,068 NATIONAL INDICATOR REPORT THAT 2460 01:38:31,068 --> 01:38:32,770 WE DON'T -- WE CONSENT REALLY 2461 01:38:32,770 --> 01:38:37,875 SAY WHAT THE PREVALENCE IS OF 2462 01:38:37,875 --> 01:38:39,877 SOMEONE WHO JUST UNDERWENT 2463 01:38:39,877 --> 01:38:43,047 CANCER THERAPY AND LIVING WITH 2464 01:38:43,047 --> 01:38:43,347 LYMPHEDEMA. 2465 01:38:43,347 --> 01:38:45,016 WE DON'T KNOW BECAUSE DATA ARE 2466 01:38:45,016 --> 01:38:55,192 IN SILOS. 2467 01:39:06,337 --> 01:39:09,707 WE HAVE A CHANCE AND AN 2468 01:39:09,707 --> 01:39:10,274 OPPORTUNITY NOW. 2469 01:39:10,274 --> 01:39:12,510 THERE'S NOW RESOURCES GOING INTO 2470 01:39:12,510 --> 01:39:15,880 LYMPHATICS AND HOW DOES IT LIVE 2471 01:39:15,880 --> 01:39:20,618 ON? 2472 01:39:20,618 --> 01:39:21,886 >> TO THAT POINT THOUGH BECAUSE 2473 01:39:21,886 --> 01:39:25,423 THINGS ARE SILOED, WHAT ADVICE 2474 01:39:25,423 --> 01:39:27,325 DO WE HAVE ABOUT 2475 01:39:27,325 --> 01:39:27,892 MULTI-INSTITUTIONAL 2476 01:39:27,892 --> 01:39:29,026 COLLABORATIONS BOTH FEDERAL 2477 01:39:29,026 --> 01:39:33,998 PARTNERS AND FLAUN -- NONPROFIT 2478 01:39:33,998 --> 01:39:35,499 TOEN THUR DATA IS GETTING OUT 2479 01:39:35,499 --> 01:39:37,735 THERE AND WHAT ARE LESSONS 2480 01:39:37,735 --> 01:39:39,870 LEARNED OF BIG BODIES BECAUSE A 2481 01:39:39,870 --> 01:39:40,838 LOT OF WORK IS BEING DONE BUT IN 2482 01:39:40,838 --> 01:39:51,148 DIFFERENT PLACES. 2483 01:40:06,664 --> 01:40:07,932 >> WE WANT TWO REACH OUT TO 2484 01:40:07,932 --> 01:40:11,502 PEOPLE LIKE THE NIH AND FDA AND 2485 01:40:11,502 --> 01:40:12,703 SEE WHAT ARE THE IMPORTANT 2486 01:40:12,703 --> 01:40:15,072 VARIABLES THAT SHOULD BE 2487 01:40:15,072 --> 01:40:16,340 COLLECTED THAT NIH MIGHT BE 2488 01:40:16,340 --> 01:40:18,809 COLLECTING RIGHT NOW WE CAN 2489 01:40:18,809 --> 01:40:21,412 STANDARDIZE AND ASK OUR TEAMS TO 2490 01:40:21,412 --> 01:40:23,514 ALSO COLLECT THE SAME DATA? 2491 01:40:23,514 --> 01:40:25,750 IF WE HAVE A COHORT, WE SHOULD 2492 01:40:25,750 --> 01:40:29,053 BE COLLECTING THE DATA THAT'S 2493 01:40:29,053 --> 01:40:32,289 STANDARDIZED AND REPRESENTATIVE 2494 01:40:32,289 --> 01:40:32,523 AS WELL. 2495 01:40:32,523 --> 01:40:33,591 REALLY FASCINATING. 2496 01:40:33,591 --> 01:40:36,761 I'VE HAD THE PRIVILEGE OF 2497 01:40:36,761 --> 01:40:39,063 WORKING WITH AN ACCESSIBILITY 2498 01:40:39,063 --> 01:40:39,296 EXPERT. 2499 01:40:39,296 --> 01:40:40,631 AS AN ACADEMIC I NEVER THOUGHT 2500 01:40:40,631 --> 01:40:44,435 ABOUT HOW WE GO OUT AND GET THE 2501 01:40:44,435 --> 01:40:46,804 PATIENTS THAT ARE PART OF OUR 2502 01:40:46,804 --> 01:40:47,338 COHORT. 2503 01:40:47,338 --> 01:40:48,773 WE COLLECT IT GENERALLY FROM OUR 2504 01:40:48,773 --> 01:40:51,175 CLINICS. 2505 01:40:51,175 --> 01:40:53,878 THAT'S A BIASSED SAMPLE. 2506 01:40:53,878 --> 01:41:02,486 SO WHAT WE'VE BEEN WORKING ON IS 2507 01:41:02,486 --> 01:41:05,823 BIG PICTURE AND SAMPLE FROM 2508 01:41:05,823 --> 01:41:07,291 REPRESENTATIVE POPULATIONS 2509 01:41:07,291 --> 01:41:09,460 WITHOUT PUTTING AN ONUS ON THE 2510 01:41:09,460 --> 01:41:10,828 ACADEMIC PERSON, FOR EXAMPLE, 2511 01:41:10,828 --> 01:41:13,364 BUT HOW DO WE DO IT BETTER? 2512 01:41:13,364 --> 01:41:18,669 BECAUSE THE TECHNOLOGY IF IT'S 2513 01:41:18,669 --> 01:41:23,908 BASED ON ONE CLINICAL COHORT IT 2514 01:41:23,908 --> 01:41:24,642 WON'T WORK ON SOMEONE ELSE IN 2515 01:41:24,642 --> 01:41:25,443 THE RURAL AREA. 2516 01:41:25,443 --> 01:41:30,881 WE'RE THINKING BIG LIKE THAT AND 2517 01:41:30,881 --> 01:41:35,586 THEN AGAIN BRINGING IN PATIENTS 2518 01:41:35,586 --> 01:41:37,922 AND EARLY INVESTIGATORS THE IDEA 2519 01:41:37,922 --> 01:41:40,324 IS WE'RE GOING TO BUILD A TRUST 2520 01:41:40,324 --> 01:41:45,396 AND WITH RURAL AREAS AND BRING 2521 01:41:45,396 --> 01:41:48,766 THEM IN AND I WAS TRYING TO 2522 01:41:48,766 --> 01:41:57,208 BRING IT ALL IN TOO. 2523 01:41:57,208 --> 01:42:00,244 >> WE CAN'T FORGET THE POWER OF 2524 01:42:00,244 --> 01:42:00,945 PATIENT ADVOCACY. 2525 01:42:00,945 --> 01:42:03,881 IT'S FRUSTRATING FOR ME WE'RE 2526 01:42:03,881 --> 01:42:05,950 COMPLETELY DEPENDENT ON ADVOCACY 2527 01:42:05,950 --> 01:42:07,318 GROUPS AND WHEN YOU TALK ABOUT 2528 01:42:07,318 --> 01:42:09,854 CONTINUITY OF RESEARCH I CAN'T 2529 01:42:09,854 --> 01:42:11,255 LOBBY FOR FUNDS. 2530 01:42:11,255 --> 01:42:12,757 WE'RE FEDERAL EMPLOYEES WE CAN'T 2531 01:42:12,757 --> 01:42:13,791 DO THAT BUT PATIENT ADVOCACY 2532 01:42:13,791 --> 01:42:15,726 HAVE THE LOUDEST VOICES. 2533 01:42:15,726 --> 01:42:17,895 I THINK WE ARE AT AN AGE WHERE 2534 01:42:17,895 --> 01:42:18,896 WE'RE STILL MISSING THE 2535 01:42:18,896 --> 01:42:20,397 OPPORTUNITY TO PARTNER WITH THEM 2536 01:42:20,397 --> 01:42:24,568 AND TO GET BETTER CONTINUITY OF 2537 01:42:24,568 --> 01:42:28,005 RESEARCH FROM FUNDING. 2538 01:42:28,005 --> 01:42:32,777 THEY'LL HAVE THE LARGEST WEIGHT 2539 01:42:32,777 --> 01:42:33,677 ON THIS. 2540 01:42:33,677 --> 01:42:36,747 >> KIM TO FOLLOW ON WHAT YOU 2541 01:42:36,747 --> 01:42:39,750 WERE TALKING ABOUT, I CONCUR ON 2542 01:42:39,750 --> 01:42:41,018 CENTRALIZATION OF DATA. 2543 01:42:41,018 --> 01:42:43,053 ONE OF THE PROBLEMS WE FACE HERE 2544 01:42:43,053 --> 01:42:45,756 IS A LACK OF ENUMERATE OF SOME 2545 01:42:45,756 --> 01:42:48,759 OF THE DATA WE MOST REQUIRE. 2546 01:42:48,759 --> 01:42:50,361 IT'S NOT SIMPLY POOLING WHAT 2547 01:42:50,361 --> 01:42:54,031 EVERYBODY HAS. 2548 01:42:54,031 --> 01:42:57,401 WE KNOW BIG DATA SETS DRIVE 2549 01:42:57,401 --> 01:42:58,836 EPIDEMIOLOGY AND MINEABLE FOR 2550 01:42:58,836 --> 01:43:00,771 INFORMATION BUT AMONG THE 2551 01:43:00,771 --> 01:43:11,081 DIFFERENT ORGANIZATIONS WHO HAS 2552 01:43:11,081 --> 01:43:13,017 WHAT'S BEING CAPTURED THAT'S NOT 2553 01:43:13,017 --> 01:43:14,919 CAPTURED IN REIMBURSEMENT DATA 2554 01:43:14,919 --> 01:43:16,754 SETS AND HOW DO WE MAKE THAT 2555 01:43:16,754 --> 01:43:20,324 HAPPEN TO FINALLY UNDERSTAND THE 2556 01:43:20,324 --> 01:43:20,958 MAGNITUDES OF THE PROBLEMS WE'RE 2557 01:43:20,958 --> 01:43:27,231 FACING. 2558 01:43:27,231 --> 01:43:27,865 2559 01:43:27,865 --> 01:43:33,604 >> A FOLLOW-UP QUESTION. 2560 01:43:33,604 --> 01:43:36,774 WE'RE EXCITED THE DOD HAS LOOKED 2561 01:43:36,774 --> 01:43:43,247 AMOUNT LYMPHATIC DISEASES. 2562 01:43:43,247 --> 01:43:45,382 ORIGINALLY TWO YEARS AGO THE 2563 01:43:45,382 --> 01:43:48,652 LYMPHATIC DISEASES WERE A PART 2564 01:43:48,652 --> 01:43:50,487 OF THE DOD PORTFOLIO AND RIGHT 2565 01:43:50,487 --> 01:43:55,392 NOW IT'S NOT THERE LONGER. 2566 01:43:55,392 --> 01:43:57,862 HOW DOES THE MECHANISM HAPPEN? 2567 01:43:57,862 --> 01:44:01,065 >> ALL THAT COMES TO THE PROBLEM 2568 01:44:01,065 --> 01:44:05,970 IS AS A RESULT OF THE ADVOCACY 2569 01:44:05,970 --> 01:44:06,270 GROUP. 2570 01:44:06,270 --> 01:44:08,606 WE WORKED CLOSELY WITH LEARN AND 2571 01:44:08,606 --> 01:44:12,276 THE TOPIC AREAS HOW THEY ENDED 2572 01:44:12,276 --> 01:44:15,145 UP FOLLOWING BEHIND PRN AND 2573 01:44:15,145 --> 01:44:17,982 THERE'S LITTLE CONGRESS ASKS US. 2574 01:44:17,982 --> 01:44:19,516 WE'RE ALWAYS HERE TO EXECUTE. 2575 01:44:19,516 --> 01:44:24,355 AND FY23 YOU WERE CORRECT WE HAD 2576 01:44:24,355 --> 01:44:25,589 LYMPHEDEMA AND LYMPHATIC DISEASE 2577 01:44:25,589 --> 01:44:27,825 WHICH WAS A HAUJ FEAT NOR 2578 01:44:27,825 --> 01:44:28,959 COMMUNITY BECAUSE IT'S NOT OFTEN 2579 01:44:28,959 --> 01:44:30,761 WE HAVE -- I'M NOT SAYING 2580 01:44:30,761 --> 01:44:33,163 THEY'RE OVERLAPPING BUT IT'S NOT 2581 01:44:33,163 --> 01:44:36,233 OFTEN WE GET IN A PROGRAM WITH 2582 01:44:36,233 --> 01:44:38,469 42 TOPIC AREAS AND NO DEDICATED 2583 01:44:38,469 --> 01:44:40,537 FUNDING FOR EACH YOU'D HAVE AN 2584 01:44:40,537 --> 01:44:43,240 OPPORTUNITY WITH ANY TWO. 2585 01:44:43,240 --> 01:44:45,109 AND THAT WAS HUGE. 2586 01:44:45,109 --> 01:44:47,344 THE FOLLOWING YEAR WE JUST ENDED 2587 01:44:47,344 --> 01:44:50,581 UP WITH LYMPHEDEMA, NO LYMPHATIC 2588 01:44:50,581 --> 01:44:55,452 DISEASE ANYMORE AND IN THE 2589 01:44:55,452 --> 01:44:56,487 INTEREST OF FULL DISCLOSURE, WE 2590 01:44:56,487 --> 01:44:58,322 HAVE A PROGRAM FROM THE SENATE. 2591 01:44:58,322 --> 01:45:00,324 WE HAVE THE SENATE LANGUAGE AND 2592 01:45:00,324 --> 01:45:01,392 REPORT THIS YEAR AND NONE OF 2593 01:45:01,392 --> 01:45:04,128 THEM WERE ADDED TO THE POTENTIAL 2594 01:45:04,128 --> 01:45:06,297 TOPIC AREAS IN FY25. 2595 01:45:06,297 --> 01:45:08,165 I KNOW THERE'S A HUGE EFFORT AND 2596 01:45:08,165 --> 01:45:10,100 ADVOCACY TO PUT THEM BACK IN THE 2597 01:45:10,100 --> 01:45:10,367 LANGUAGE. 2598 01:45:10,367 --> 01:45:14,939 I HOPE THAT WE GET TO THAT BUT 2599 01:45:14,939 --> 01:45:18,609 RIGHT NOW WE ARE BASICALLY 2600 01:45:18,609 --> 01:45:20,010 DEPENDENT AND WHY I SAY 2601 01:45:20,010 --> 01:45:23,614 PARTNERING WITH ADVOCACY GROUPS 2602 01:45:23,614 --> 01:45:27,251 AND THERE'S OTHER MEANS AND 2603 01:45:27,251 --> 01:45:27,918 HOWARD HUGHES FOR INSTANCE THEY 2604 01:45:27,918 --> 01:45:30,087 INVEST IN PEOPLE NOT PROJECTS. 2605 01:45:30,087 --> 01:45:35,259 THERE'S OTHER WAYS OF FUNDING WE 2606 01:45:35,259 --> 01:45:39,630 CAN MAKE SURE CONTINUITY AT 2607 01:45:39,630 --> 01:45:43,167 RESEARCH THAT WE AT DOD CAN'T. 2608 01:45:43,167 --> 01:45:44,435 >> IT'S CONGRESS? 2609 01:45:44,435 --> 01:45:46,270 >> IT'S CONGRESS. 2610 01:45:46,270 --> 01:45:47,938 CONGRESS HAS THE POWER OF PURSE. 2611 01:45:47,938 --> 01:45:49,039 IT'S ALWAYS CONGRESS. 2612 01:45:49,039 --> 01:45:51,342 BUT THE DECISION IS BASED ON HOW 2613 01:45:51,342 --> 01:45:54,144 MUCH LOBBYING GOES BEHIND IT I 2614 01:45:54,144 --> 01:45:54,778 WOULD SAY. 2615 01:45:54,778 --> 01:45:59,450 >> ONE OF THE THINGS WE ALWAYS 2616 01:45:59,450 --> 01:46:00,784 DISCUSSED IS PARTNERING WITH 2617 01:46:00,784 --> 01:46:03,187 FEDERAL AGENCIES WITH OUTSIDE 2618 01:46:03,187 --> 01:46:03,454 AGENCIES. 2619 01:46:03,454 --> 01:46:08,759 DOES THAT HAPPEN AT ALL THROUGH 2620 01:46:08,759 --> 01:46:11,195 DOD OR ARPA-H OR NIH? 2621 01:46:11,195 --> 01:46:14,198 IS THERE ANY MECHANISM 2622 01:46:14,198 --> 01:46:18,302 PRECEDENCE FOR CDC OR ANY OF 2623 01:46:18,302 --> 01:46:19,169 THOSE STAKEHOLDERS HERE WHERE 2624 01:46:19,169 --> 01:46:21,905 OUTSIDE AGENCIES ARE PARTNERING 2625 01:46:21,905 --> 01:46:24,074 WITH FEDERAL AGENCY TO DRIVE A 2626 01:46:24,074 --> 01:46:24,742 RESEARCH AGENDA? 2627 01:46:24,742 --> 01:46:27,945 >> SO I WILL SPEAK FOR THE DOD, 2628 01:46:27,945 --> 01:46:31,115 I SHOWED A SLIDE THAT HAD ALL 2629 01:46:31,115 --> 01:46:32,783 THE STRATEGIC GOALS WHEN YOU 2630 01:46:32,783 --> 01:46:35,686 TALK ABOUT OUTSIDE AGENCIES. 2631 01:46:35,686 --> 01:46:40,290 I WILL INCLUDE AND KIM CAN 2632 01:46:40,290 --> 01:46:41,392 ATTEST TO THAT INCLUDING OTHER 2633 01:46:41,392 --> 01:46:42,860 AGENCIES AN ADVOCACY GROUPS. 2634 01:46:42,860 --> 01:46:45,162 I HAVE ROUNDTABLE DISCUSSIONS 2635 01:46:45,162 --> 01:46:47,564 EVERY YEAR WITH ADVOCACY GROUPS 2636 01:46:47,564 --> 01:46:48,565 UNDER EACH PORTFOLIO ASKING WHAT 2637 01:46:48,565 --> 01:46:51,402 IS IT YOUR FIELD NEEDS OR 2638 01:46:51,402 --> 01:46:52,002 COMMUNITY NEEDS? 2639 01:46:52,002 --> 01:46:55,973 MAKING SURE WE'RE CAPTURING IN 2640 01:46:55,973 --> 01:46:57,908 OUR SOLICITATION TO ENSURE THE 2641 01:46:57,908 --> 01:46:59,109 NEEDS OF THE COMMUNITY ARE 2642 01:46:59,109 --> 01:47:03,447 CAPTURED IN THE SOLICITATION. 2643 01:47:03,447 --> 01:47:08,185 THAT ENSURES WE RECEIVE A LOT OF 2644 01:47:08,185 --> 01:47:12,756 PROPOSALS AND IN FY23 WE 2645 01:47:12,756 --> 01:47:15,592 RECEIVED 19 PROPOSALS IN 2646 01:47:15,592 --> 01:47:18,796 LYMPHATIC DISEASE AND LYMPHEDEMA 2647 01:47:18,796 --> 01:47:19,063 COMBINED. 2648 01:47:19,063 --> 01:47:23,267 I THINK THERE'S MORE OUTREACH WE 2649 01:47:23,267 --> 01:47:23,967 CAN DO. 2650 01:47:23,967 --> 01:47:25,769 WE PROVIDER WEBINARS TO THE 2651 01:47:25,769 --> 01:47:27,104 RESEARCHERS IN THE COMMUNITY TO 2652 01:47:27,104 --> 01:47:29,473 MAKE SURE THEY KNOW AND THOSE 2653 01:47:29,473 --> 01:47:34,111 WEBINARS ARE ORGANIZED THROUGH 2654 01:47:34,111 --> 01:47:34,511 ADVOCACY GROUPS. 2655 01:47:34,511 --> 01:47:36,980 THEY KNOW THERE'S A FUNDING 2656 01:47:36,980 --> 01:47:37,815 OPPORTUNITY AVAILABLE BUT STILL 2657 01:47:37,815 --> 01:47:40,951 ONLY RECEIVED 19 PROPOSALS. 2658 01:47:40,951 --> 01:47:43,554 WE ENDED UP FUNDING OVER FIVE SO 2659 01:47:43,554 --> 01:47:45,923 WE DID HAVE A VERY GOOD SUCCESS 2660 01:47:45,923 --> 01:47:48,292 RATE AND FUNDING IF YOU TAKE 2661 01:47:48,292 --> 01:47:51,895 INTO CONSIDERATION IT'S A 2662 01:47:51,895 --> 01:47:53,997 PROGRAM WITH 42 TOPIC AREAS. 2663 01:47:53,997 --> 01:47:55,632 >> I'LL ADD THAT WE'LL HEAR MORE 2664 01:47:55,632 --> 01:47:58,035 ABOUT THOSE PARTNERSHIPS IN THE 2665 01:47:58,035 --> 01:48:00,904 NEXT PANEL AS WELL. 2666 01:48:00,904 --> 01:48:06,076 >> WE HAVE TIME FOR ONE LAST 2667 01:48:06,076 --> 01:48:06,343 QUESTION. 2668 01:48:06,343 --> 01:48:09,046 >> CAN YOU COMMENT ON THE 2669 01:48:09,046 --> 01:48:09,913 APPROVAL PROCESS COMPARING 2670 01:48:09,913 --> 01:48:12,683 SYSTEMIC MEDICATIONS VERSUS 2671 01:48:12,683 --> 01:48:16,386 TOPICAL DRUGS OR EVEN DEVICES? 2672 01:48:16,386 --> 01:48:18,322 THERE'S DIFFERENT RULES FOR 2673 01:48:18,322 --> 01:48:19,957 SYSTEMIC VERSUS TOPICAL 2674 01:48:19,957 --> 01:48:22,993 MEDICATIONS AND CAN YOU COMMENT 2675 01:48:22,993 --> 01:48:24,027 ON THAT? 2676 01:48:24,027 --> 01:48:28,532 >> MANY TOPICAL PRODUCTS BOTH 2677 01:48:28,532 --> 01:48:30,334 SYSTEMIC AND TOPICAL PRODUCTS 2678 01:48:30,334 --> 01:48:32,970 WILL END UP IN THE SAME DIVISION 2679 01:48:32,970 --> 01:48:40,177 UNLESS THEY HAVE A SPECIFIC 2680 01:48:40,177 --> 01:48:50,787 DETERMINATE -- DERMATOLOGICS 2681 01:49:01,865 --> 01:49:04,968 AND THE SAME REGULATORY 2682 01:49:04,968 --> 01:49:07,271 STANDARDS WILL APPLY IDENTIFYING 2683 01:49:07,271 --> 01:49:08,138 WHAT YOUR TREATMENT INDICATION 2684 01:49:08,138 --> 01:49:12,709 THROUGH THE POPULATION IS AND 2685 01:49:12,709 --> 01:49:13,844 DEMONSTRATING IN DOSE AN 2686 01:49:13,844 --> 01:49:16,747 EFFICACIOUS RESPONSE AND IS 2687 01:49:16,747 --> 01:49:17,181 SAFE. 2688 01:49:17,181 --> 01:49:18,415 THINKING ABOUT SAFETY WITHOUT 2689 01:49:18,415 --> 01:49:20,384 SYSTEMIC EXPOSURE YOU MAY HAVE 2690 01:49:20,384 --> 01:49:21,919 LESS OF A RISK PROFILE THAN YOU 2691 01:49:21,919 --> 01:49:32,196 WOULD HAVE OTHERWISE. 2692 01:49:32,196 --> 01:49:34,298 YOU CAN UNDERSTAND A BASE NUMBER 2693 01:49:34,298 --> 01:49:35,933 OF SAFETY EVENTS WITH USE. 2694 01:49:35,933 --> 01:49:39,136 WITH THE DEVICE SIDE I CAN'T 2695 01:49:39,136 --> 01:49:42,306 SPEAK SPECIFICALLY TO THAT BUT 2696 01:49:42,306 --> 01:49:43,674 TYPICALLY CLINICAL TRIALS WITHIN 2697 01:49:43,674 --> 01:49:46,777 DEVICES ARE SMALLER AND OFTEN 2698 01:49:46,777 --> 01:49:50,347 TIMES THEY DON'T HAVE THE SAME 2699 01:49:50,347 --> 01:49:51,648 REQUIREMENTS FOR COMPARATOR 2700 01:49:51,648 --> 01:49:52,282 ARMS. 2701 01:49:52,282 --> 01:49:53,650 AGAIN, IN THE DRUG SPACE IT'S 2702 01:49:53,650 --> 01:49:56,119 GOING TO BE SIMILAR BETWEEN 2703 01:49:56,119 --> 01:49:59,523 TOPICAL AND SYSTEMIC AND ASK 2704 01:49:59,523 --> 01:50:00,757 CECELIA TO COMMENT IF SHE HAS A 2705 01:50:00,757 --> 01:50:01,291 DIFFERENT PERSPECTIVE. 2706 01:50:01,291 --> 01:50:03,694 >> YOU CAPTURED IT WELL, JORDAN. 2707 01:50:03,694 --> 01:50:06,330 FOR THE MEDICAL PRODUCT WE COME 2708 01:50:06,330 --> 01:50:07,798 BACK TO SUBSTANTIAL EFFORT AND 2709 01:50:07,798 --> 01:50:09,866 EFFECTIVENESS AND HOW IT CAN BE 2710 01:50:09,866 --> 01:50:11,668 DEMONSTRATED CAN VARY AND WHERE 2711 01:50:11,668 --> 01:50:13,904 THE DISCUSSION HELPFUL. 2712 01:50:13,904 --> 01:50:15,939 I THINK YOU CAN TREAT IT WELL. 2713 01:50:15,939 --> 01:50:17,241 THANKS. 2714 01:50:17,241 --> 01:50:19,309 >> THANK YOU FOR STICKING WITH 2715 01:50:19,309 --> 01:50:21,545 US AT LEAST 15 MINUTES PAST WHAT 2716 01:50:21,545 --> 01:50:21,912 WE PROMISED. 2717 01:50:21,912 --> 01:50:23,113 WE APPRECIATE IT. 2718 01:50:23,113 --> 01:50:25,349 I KNOW THERE ARE ADDITIONAL 2719 01:50:25,349 --> 01:50:27,718 QUESTIONS AROUND THE ROOM SO TO 2720 01:50:27,718 --> 01:50:29,653 OUR PANELISTS NOT ONLY WILL I 2721 01:50:29,653 --> 01:50:31,421 THANK YOU FOR BEING WITH US 2722 01:50:31,421 --> 01:50:33,223 TODAY BUT IN ADVANCE FOR 2723 01:50:33,223 --> 01:50:34,958 RESPONDING TO FOLLOW-UP 2724 01:50:34,958 --> 01:50:35,959 QUESTIONS WHICH I'M SURE YOU'LL 2725 01:50:35,959 --> 01:50:37,327 GET OVER E-MAIL. 2726 01:50:37,327 --> 01:50:40,130 AS WE MOVE TO OUR BREAK I'LL 2727 01:50:40,130 --> 01:50:41,932 PASS THE MIKE TO SELEN. 2728 01:50:41,932 --> 01:50:44,368 >> THANK YOU, EVERYONE AND 2729 01:50:44,368 --> 01:50:45,936 ESPECIALLY OUR STAKEHOLDERS. 2730 01:50:45,936 --> 01:50:48,005 THANK YOU FOR ME PESTERING YOU 2731 01:50:48,005 --> 01:50:49,406 TO COME TO THIS SESSION AND YOU 2732 01:50:49,406 --> 01:50:53,110 CAN SEE THIS IS A VERY IMPORTANT 2733 01:50:53,110 --> 01:50:57,347 DISCUSSION AND HOPE THIS WAS THE 2734 01:50:57,347 --> 01:50:59,483 INITIAL CONVERSATION AND WE'LL 2735 01:50:59,483 --> 01:51:03,287 SEE HOW THERE'S A LARGE NEED IN 2736 01:51:03,287 --> 01:51:04,755 THE LYMPHATIC RESEARCH AREA BUT 2737 01:51:04,755 --> 01:51:07,758 ALSO UNDER LIES THAT THOUGH THIS 2738 01:51:07,758 --> 01:51:10,127 IS A LYMPHATIC DISEASE WE'RE 2739 01:51:10,127 --> 01:51:11,161 TALKING ABOUT IT MAY BE 2740 01:51:11,161 --> 01:51:13,797 APPLICABLE TO MANY DISEASES THAT 2741 01:51:13,797 --> 01:51:16,767 PEOPLE ARE IN NEED FOR THEIR 2742 01:51:16,767 --> 01:51:17,734 WELL BEING. 2743 01:51:17,734 --> 01:51:19,903 I HOPE WE CAN CARRY THE COVERING 2744 01:51:19,903 --> 01:51:21,938 ON AND YOU WILL BE CONTACTED. 2745 01:51:21,938 --> 01:51:28,545 THANK YOU. 2746 01:51:28,545 --> 01:51:29,313 >> THANK YOU. 2747 01:51:29,313 --> 01:51:31,982 >> WITH THAT OUR OPEN SESSION 2748 01:51:31,982 --> 01:51:32,182 ENDS. 2749 01:51:32,182 --> 01:51:35,291 WE'LL HAVE A LUNCH BREAK 2750 01:51:35,291 --> 01:51:38,127 FOR EVERYONE IN THIS ENVIRONMENT 2751 01:51:38,127 --> 01:51:41,063 USE THE SEND FEEDBACK BUTTON AND 2752 01:51:41,063 --> 01:51:46,919 THE QUESTIONS WILL BE RECORDED 2753 01:51:46,919 --> 01:51:48,120 AND TAKEN INTO CONSIDERATION BY 2754 01:51:48,120 --> 01:51:48,654 THE COMMISSION AFTER THE 2755 01:51:48,654 --> 01:51:56,262 MEETING. 2756 01:51:56,262 --> 01:52:00,833 THIS VIDEO WILL BE ARCHIVED FOR 2757 01:52:00,833 --> 01:52:02,735 NIH COLLEAGUES FOR AN INFINITE 2758 01:52:02,735 --> 01:52:04,570 AMOUNT OF TIME AND WE'LL START 2759 01:52:04,570 --> 01:52:05,437 THE SECOND PANEL. 2760 01:52:05,437 --> 01:52:11,243 I'LL PASS THE MIKE TO OUR 2761 01:52:11,243 --> 01:52:21,687 CO-CHAIR DR. STAN ROCKSON. 2762 01:52:27,459 --> 01:52:30,196 >> THIS IS AN INCLUSIVE 2763 01:52:30,196 --> 01:52:31,864 ACCESSIBLE FORUM TO ADDRESS 2764 01:52:31,864 --> 01:52:33,399 CHALLENGE IN SCIENTIFIC AND 2765 01:52:33,399 --> 01:52:33,999 CLINICAL OPPORTUNITIES. 2766 01:52:33,999 --> 01:52:38,137 WE HOPE TO GATHER INPUT FROM A 2767 01:52:38,137 --> 01:52:39,405 WIDE AND DIVERSE GROUP OF 2768 01:52:39,405 --> 01:52:43,008 STAKEHOLDER TO IDENTIFY GAPS AND 2769 01:52:43,008 --> 01:52:46,946 CHALLENGES FOR ACCESSIBLE 2770 01:52:46,946 --> 01:52:50,316 LOGISTIC DISEASE DETECTION, 2771 01:52:50,316 --> 01:52:51,984 DIAGNOSIS AND PREVENTION FOR ALL 2772 01:52:51,984 --> 01:52:55,754 POPULATIONS AN INCLUSIVE FORUM. 2773 01:52:55,754 --> 01:53:02,194 AND REPORT OUT TO THE NATIONAL 2774 01:53:02,194 --> 01:53:03,729 HEART, LUNG AND BLOOD INSTITUTE 2775 01:53:03,729 --> 01:53:05,364 UNIVERSITY COUNCIL. 2776 01:53:05,364 --> 01:53:08,834 WE'RE COMPRISED AS A COMMISSION 2777 01:53:08,834 --> 01:53:10,970 SUBDIVIDED INTO COMMITTEES AND 2778 01:53:10,970 --> 01:53:14,039 SEVERAL OF OUR COMMISSION MANY 2779 01:53:14,039 --> 01:53:17,076 EMBERS SERVE ON MULTIPLE 2780 01:53:17,076 --> 01:53:17,376 COMMITTEES. 2781 01:53:17,376 --> 01:53:19,678 THESE ARE SCIENTIFIC 2782 01:53:19,678 --> 01:53:21,547 ADVANCEMENT, EDUCATIONAL 2783 01:53:21,547 --> 01:53:23,616 IMPERATIVES, MEASURABLE RESULTS, 2784 01:53:23,616 --> 01:53:27,152 THIRD PARTY AND COMMUNITY GROWTH 2785 01:53:27,152 --> 01:53:29,388 AND YOU'LL SEE ON THE SLIDES 2786 01:53:29,388 --> 01:53:30,289 INDICATED ON THE CHAIRS OF THE 2787 01:53:30,289 --> 01:53:35,594 PERSPECTIVE COMMITTEES. 2788 01:53:35,594 --> 01:53:46,105 WITH THAT IN MIND I'D LIKE TO 2789 01:53:46,972 --> 01:53:52,878 MOVE TO PANEL B AND EXPLORING 2790 01:53:52,878 --> 01:53:54,179 DIFFERENT MODELS TO ADVANCE 2791 01:53:54,179 --> 01:53:56,749 LYMPHATIC RESEARCH DISEASES AND 2792 01:53:56,749 --> 01:54:00,586 THIRST IS LAURA LYMAN RODRIGUEZ 2793 01:54:00,586 --> 01:54:06,692 FOR STRATEGIC PLANNING AND 2794 01:54:06,692 --> 01:54:09,361 OUTREACH OF THE OF THE 2795 01:54:09,361 --> 01:54:10,195 PATIENT-CENTERED OUTCOMES 2796 01:54:10,195 --> 01:54:10,696 RESEARCH INSTITUTE. 2797 01:54:10,696 --> 01:54:21,206 >> CAN EVERYONE HEAR ME OKAY? 2798 01:54:38,891 --> 01:54:44,663 WHAT IS TO OUR NAME IS PATIENT 2799 01:54:44,663 --> 01:54:44,997 CENTEREDNESS. 2800 01:54:44,997 --> 01:54:46,699 I WILL PROVIDE REMARKS TO 2801 01:54:46,699 --> 01:54:47,933 PROVIDE THAT HIGH LEVEL 2802 01:54:47,933 --> 01:54:48,701 BACKGROUND INFORMATION FOR THOSE 2803 01:54:48,701 --> 01:54:54,206 WHO MAY NOT BE FAMILIAR WITH P 2804 01:54:54,206 --> 01:54:58,210 CORRI BUT TRY TO KEEP IT LIFE -- 2805 01:54:58,210 --> 01:55:01,113 PCORI AND DURING THE Q&A I CAN 2806 01:55:01,113 --> 01:55:03,449 PROVIDER MORE INFORMATION. 2807 01:55:03,449 --> 01:55:04,550 -- PROVIDE MORE INFORMATION. 2808 01:55:04,550 --> 01:55:05,918 TO START WITH THE BASICS LOOKING 2809 01:55:05,918 --> 01:55:10,689 AT OUR MISSION AND THAT IS 2810 01:55:10,689 --> 01:55:12,358 REALLY GROUNDED IN THE CONCEPT 2811 01:55:12,358 --> 01:55:13,892 OF PROVIDING INFORMATION TO 2812 01:55:13,892 --> 01:55:16,095 PATIENTS, CAREGIVERS, PROVIDERS, 2813 01:55:16,095 --> 01:55:18,630 ALL SECTORS OF THE HEATH 2814 01:55:18,630 --> 01:55:21,300 RESEARCH AND PARTICULARLY HEALTH 2815 01:55:21,300 --> 01:55:23,002 CARE COMMUNITY TO INFORM 2816 01:55:23,002 --> 01:55:25,871 EVIDENCE-BASED DECISION MAKING 2817 01:55:25,871 --> 01:55:31,877 ABOUT HEALTH TOE IMPROVE HEALTH 2818 01:55:31,877 --> 01:55:32,144 OUTCOMES. 2819 01:55:32,144 --> 01:55:36,882 THAT'S THE GROUND IING FOUNDATI 2820 01:55:36,882 --> 01:55:40,386 HOW PCORI'S WORK BEEN 2821 01:55:40,386 --> 01:55:43,856 ESTABLISHED AND ORGANIZED AND 2822 01:55:43,856 --> 01:55:46,358 THE GOAL OF PATIENT CENTEREDNESS 2823 01:55:46,358 --> 01:55:48,961 IMPROVING HEALTH OUTCOMES 2824 01:55:48,961 --> 01:55:49,762 THROUGH THAT LEVER OF INFORMED 2825 01:55:49,762 --> 01:56:00,305 DECISION MAKING BY ALL PARTIES. 2826 01:56:01,607 --> 01:56:04,543 IN TERMS OF BEING FULLY FUNDED 2827 01:56:04,543 --> 01:56:05,544 BY THE FEDERAL GOVERNMENT BUT 2828 01:56:05,544 --> 01:56:10,215 NOT A FEDERAL AGENCY, SO WE ARE 2829 01:56:10,215 --> 01:56:12,785 A NON-PROFIT ORGANIZATION 2830 01:56:12,785 --> 01:56:14,486 ESTABLISHED UNDER THE AFFORDABLE 2831 01:56:14,486 --> 01:56:19,091 CARE ACT IN 2010 AND FUNDING WAS 2832 01:56:19,091 --> 01:56:22,194 REAUTHORIZED THROUGH 2029 IN 2833 01:56:22,194 --> 01:56:26,665 2019. 2834 01:56:26,665 --> 01:56:30,569 THIS COMES FROM APPROPRIATIONS 2835 01:56:30,569 --> 01:56:32,237 AS WELL AS THROUGH FEES TO THE 2836 01:56:32,237 --> 01:56:38,210 PAIR COMMUNITY THAT COME IN AND 2837 01:56:38,210 --> 01:56:42,347 ALSO FUNDING FOR THE 2838 01:56:42,347 --> 01:56:44,283 PATIENT-CENTERED TRUST OUTCOME 2839 01:56:44,283 --> 01:56:46,385 AND SUPPORT PCORI AND THE HEALTH 2840 01:56:46,385 --> 01:56:48,821 CARE FOR EIGHTH AND EQUALITY AND 2841 01:56:48,821 --> 01:56:51,590 THE DEPARTMENT OF HEALTH AND 2842 01:56:51,590 --> 01:56:53,025 HUMAN SERVICES PARTICULARLY 2843 01:56:53,025 --> 01:56:55,694 AROUND DATA INFRASTRUCTURE. 2844 01:56:55,694 --> 01:56:58,063 SO WITHIN THE UNLYING STATUTE 2845 01:56:58,063 --> 01:57:01,667 ARE SPECIFIC PURPOSES FOR THE 2846 01:57:01,667 --> 01:57:02,701 THREE ENTITIES. 2847 01:57:02,701 --> 01:57:06,705 WITH PCORI FOCUSSED ON THE 2848 01:57:06,705 --> 01:57:08,207 PATIENT-CENTERED COMPARATIVE 2849 01:57:08,207 --> 01:57:09,108 CLINICAL EFFECTIVENESS RESEARCH 2850 01:57:09,108 --> 01:57:14,746 AND WE'LL TALK ABOUT THAT ON THE 2851 01:57:14,746 --> 01:57:18,884 NEXT SLIDE. 2852 01:57:18,884 --> 01:57:21,120 AND SINCE WE BEGAN RESEARCH 2853 01:57:21,120 --> 01:57:24,890 AWARDS WE FUNDED OVER 2400 2854 01:57:24,890 --> 01:57:28,760 AWOORDZ AS OF -- AWARDS AT THE 2855 01:57:28,760 --> 01:57:31,630 END OF AUGUST FOR RESEARCH AND 2856 01:57:31,630 --> 01:57:32,231 RESEARCH-RELATED ACTIVITIES. 2857 01:57:32,231 --> 01:57:38,270 I'LL TALK ABOUT THAT AS WELL. 2858 01:57:38,270 --> 01:57:39,538 CLINICAL EFFECTIVENESS RESEARCH 2859 01:57:39,538 --> 01:57:44,810 TO LEVEL SET FOR EVERYONE, THAT 2860 01:57:44,810 --> 01:57:48,046 IS IN TERMS OF THE YOU RESEARCH 2861 01:57:48,046 --> 01:57:50,215 SPECTRUM BETWEEN BASIC RESEARCH 2862 01:57:50,215 --> 01:57:53,485 AND CLINICAL PRACTICE. 2863 01:57:53,485 --> 01:57:55,354 IT'S DISTAL TO RESEARCH COMING 2864 01:57:55,354 --> 01:57:57,222 FROM NIH FOR A LONG TIME SEEM TO 2865 01:57:57,222 --> 01:57:59,124 BE AT THE FAR END OF THINGS. 2866 01:57:59,124 --> 01:58:02,194 WE DO LOOK SPECIFICALLY AT 2867 01:58:02,194 --> 01:58:02,828 COMPARING TWO DIFFERENT 2868 01:58:02,828 --> 01:58:06,932 TREATMENTS OR INTERVENTIONS AND 2869 01:58:06,932 --> 01:58:09,168 LOOKING AT WHAT IS THE MOST 2870 01:58:09,168 --> 01:58:12,237 EFFECTIVE IN A GIVEN SCENARIO OR 2871 01:58:12,237 --> 01:58:13,138 DIFFERENT GROUPS WITHIN THE 2872 01:58:13,138 --> 01:58:14,406 STUDY POPULATION AND FOCUSSING 2873 01:58:14,406 --> 01:58:18,043 ON THE DIFFERENT POPULATIONS 2874 01:58:18,043 --> 01:58:19,778 UNDERSTANDING HETEROGENEITY OF 2875 01:58:19,778 --> 01:58:21,647 EFFECT AND UNDERSTANDING WITH 2876 01:58:21,647 --> 01:58:24,816 THE GOAL TO THINK ABOUT WHAT 2877 01:58:24,816 --> 01:58:26,618 WORKS BEST FOR EACH INDIVIDUAL 2878 01:58:26,618 --> 01:58:27,119 AND THEIR PARTICULAR 2879 01:58:27,119 --> 01:58:30,189 CIRCUMSTANCES WHICH AGAIN GOES 2880 01:58:30,189 --> 01:58:36,528 BACK TO OUR PATIENT CENTEREDNESS 2881 01:58:36,528 --> 01:58:37,863 LESS FOR EVERYTHING WE DO. 2882 01:58:37,863 --> 01:58:39,531 WE DO NOT MAKE POLICY 2883 01:58:39,531 --> 01:58:40,599 RECOMMENDATIONS OR MAKE 2884 01:58:40,599 --> 01:58:42,000 RECOMMENDATIONS WITH REGARD TO 2885 01:58:42,000 --> 01:58:44,269 CLINICAL GUIDELINES AND THAT'S 2886 01:58:44,269 --> 01:58:45,537 IMPORTANT TO UNDERSTAND. 2887 01:58:45,537 --> 01:58:47,005 WE VERY MUCH INTEND FOR THE 2888 01:58:47,005 --> 01:58:53,111 EVIDENCE THAT IS GENERATED 2889 01:58:53,111 --> 01:58:54,546 THROUGH PCORI FUNDED RESEARCH TO 2890 01:58:54,546 --> 01:58:58,183 BE INFORMATIVE TO THE DECISION 2891 01:58:58,183 --> 01:58:58,817 MAKERS MAKING DECISIONS IN THE 2892 01:58:58,817 --> 01:59:04,056 POLICY REALM. 2893 01:59:04,056 --> 01:59:06,892 AND LIKEWISE WE'RE FOCUSED AND 2894 01:59:06,892 --> 01:59:11,830 ENCOURAGED EN OUR RESEARCH FOR 2895 01:59:11,830 --> 01:59:13,932 ADVOCATORS TO CONSIDER THE 2896 01:59:13,932 --> 01:59:16,868 PATIENT BURDENS OR OTHER 2897 01:59:16,868 --> 01:59:21,640 OUTCOMES RELEVANT TO THE STUDY 2898 01:59:21,640 --> 01:59:24,376 AND SO LOOK AT COST 2899 01:59:24,376 --> 01:59:33,051 EFFECTIVENESS RESEARCH ITSELF. 2900 01:59:33,051 --> 01:59:36,688 AND A FULL PORTFOLIO AND SUITE 2901 01:59:36,688 --> 01:59:37,990 OF ACTIVITIES BECAUSE ONE OF THE 2902 01:59:37,990 --> 01:59:39,858 OTHER THINGS THAT MAKES PCORI 2903 01:59:39,858 --> 01:59:40,859 DIFFERENT FROM OTHER RESEARCH 2904 01:59:40,859 --> 01:59:42,027 FUNDERS IS LOOKING BEYOND THE 2905 01:59:42,027 --> 01:59:44,663 RESEARCH ITSELF AND FOCUS ON 2906 01:59:44,663 --> 01:59:45,330 DISSEMINATION AND IMPLEMENTATION 2907 01:59:45,330 --> 01:59:49,301 TO CARRY FORWARD THAT PATIENT 2908 01:59:49,301 --> 01:59:51,103 CENTERED APPROACH TO MAKE SURE 2909 01:59:51,103 --> 01:59:52,671 THAT INDIVIDUALS WHETHER 2910 01:59:52,671 --> 01:59:54,239 PATIENTS OR PROVIDERS, HEALTH 2911 01:59:54,239 --> 01:59:56,141 SYSTEMS, ETCETERA HAVE THE 2912 01:59:56,141 --> 01:59:57,576 INFORMATION THEY NEED TO INFORM 2913 01:59:57,576 --> 01:59:58,176 DECISIONS THAT THEY'RE MAKING 2914 01:59:58,176 --> 02:00:07,352 ABOUT HEALTH. 2915 02:00:07,352 --> 02:00:11,056 THERE'S AN EXTENSIVE STRATEGIC 2916 02:00:11,056 --> 02:00:13,492 PLANNING ACTIVITY INVOLVING 2917 02:00:13,492 --> 02:00:15,127 CANVASSING THE DIFFERENT SECTORS 2918 02:00:15,127 --> 02:00:17,796 WITHIN PCORI'S COMMUNITY AND 2919 02:00:17,796 --> 02:00:19,031 PATIENT AND ADVOCACY COMMUNITIES 2920 02:00:19,031 --> 02:00:21,300 AND SCIENTIFIC AND POLICY 2921 02:00:21,300 --> 02:00:22,868 COMMUNITY, ETCETERA, TO 2922 02:00:22,868 --> 02:00:26,038 UNDERSTAND WHERE WERE THE 2923 02:00:26,038 --> 02:00:27,306 GREATEST OPPORTUNITIES FOR 2924 02:00:27,306 --> 02:00:28,407 COMPARATIVE CLINICAL 2925 02:00:28,407 --> 02:00:30,042 EFFECTIVENESS RESEARCH TO FOCUS 2926 02:00:30,042 --> 02:00:31,276 AGAIN ON PATIENT CENTERED 2927 02:00:31,276 --> 02:00:31,510 HEALTH. 2928 02:00:31,510 --> 02:00:33,512 IT'S NOT A DISEASE LENS WE BRING 2929 02:00:33,512 --> 02:00:39,384 TO THE WORK WE DO BUT LOOKING AT 2930 02:00:39,384 --> 02:00:46,191 THE WHOLE PERSON HEALTH AND AT 2931 02:00:46,191 --> 02:00:49,494 NATIONAL PRIORITY FOR HEALTH. 2932 02:00:49,494 --> 02:00:50,696 THE HIGHEST LEVEL OBJECTIVES WE 2933 02:00:50,696 --> 02:00:52,397 HAVE AND THERE'S FIVE GOALS 2934 02:00:52,397 --> 02:00:52,698 HERE. 2935 02:00:52,698 --> 02:00:56,301 I WON'T TALK IN DEPTH ABOUT THEM 2936 02:00:56,301 --> 02:00:59,604 TODAY BUT THEY ARE ALL VERY 2937 02:00:59,604 --> 02:01:01,907 BROAD AND LONG TERM ASPIRATIONAL 2938 02:01:01,907 --> 02:01:04,276 OBJECTIVES WE HAVE AND WHAT'S 2939 02:01:04,276 --> 02:01:08,347 IMPORTANT ABOUT THEM TOO IS 2940 02:01:08,347 --> 02:01:09,614 THEY'RE MUTUALLY REINFORCING. 2941 02:01:09,614 --> 02:01:11,049 YOU CAN'T TALK ABOUT ONE WITHOUT 2942 02:01:11,049 --> 02:01:12,217 ASPECTS OF THE OTHER. 2943 02:01:12,217 --> 02:01:16,788 WE APPROACH THESE IN COLLECTIVE 2944 02:01:16,788 --> 02:01:17,989 WAY VERSUS A GOAL BY GOAL 2945 02:01:17,989 --> 02:01:18,423 FACTOR. 2946 02:01:18,423 --> 02:01:20,659 PART OF HOW WE DO THAT AND I 2947 02:01:20,659 --> 02:01:22,194 WILL SHARE MORE DETAILS ON THIS 2948 02:01:22,194 --> 02:01:24,896 HAVE TO DO WITH THE WHOLISTIC 2949 02:01:24,896 --> 02:01:27,366 APPROACH WE BRING TO SHAPING THE 2950 02:01:27,366 --> 02:01:27,799 PORTFOLIO. 2951 02:01:27,799 --> 02:01:31,403 THE OTHER CORE ANCHOR,ING, IF 2952 02:01:31,403 --> 02:01:32,971 YOU WILL, THAT GUIDES PCORI AND 2953 02:01:32,971 --> 02:01:38,009 PARTICULARLY ITS RESEARCH 2954 02:01:38,009 --> 02:01:44,549 ACTIVITIES THE RESEARCH AGENDA 2955 02:01:44,549 --> 02:01:46,118 AGAIN COMING THROUGH THE 2956 02:01:46,118 --> 02:01:48,086 PERSON-CENTERED HEALTH LENS AND 2957 02:01:48,086 --> 02:01:50,856 THINKING HOW WILL ANY OF THE 2958 02:01:50,856 --> 02:01:52,524 RESEARCH AFFECT PATIENT SLIDES, 2959 02:01:52,524 --> 02:01:54,226 THE CHOICES PATIENTS AND 2960 02:01:54,226 --> 02:01:56,895 FAMILIES ARE FACING AS THEY 2961 02:01:56,895 --> 02:01:58,430 NAVIGATE ANY HEALTH JOURNEY AND 2962 02:01:58,430 --> 02:01:59,731 OVER THE LIFE SPAN. 2963 02:01:59,731 --> 02:02:04,936 THIS IS A FRAMEWORK THAT GUIDES 2964 02:02:04,936 --> 02:02:06,371 THE RESEARCH THAT WE FUND AND 2965 02:02:06,371 --> 02:02:07,239 NOT AN EXTENSIVE LIST OF 2966 02:02:07,239 --> 02:02:14,212 PROJECTS WE FUND. 2967 02:02:14,212 --> 02:02:15,647 I WANT TO TALK ABOUT SOME OF HOW 2968 02:02:15,647 --> 02:02:17,082 WE GET TO THE TOPICS WE FUND 2969 02:02:17,082 --> 02:02:18,884 THROUGH OUR FUNDING ANNOUNCE. 2970 02:02:18,884 --> 02:02:20,318 S TO TALK ABOUT HOLISTIC 2971 02:02:20,318 --> 02:02:20,652 APPROACH. 2972 02:02:20,652 --> 02:02:23,889 THIS IS HOW WE EMBODY THE 2973 02:02:23,889 --> 02:02:25,957 MISSION STATEMENT THAT I TALKED 2974 02:02:25,957 --> 02:02:29,094 ABOUT INTO THE WORK WE DO. 2975 02:02:29,094 --> 02:02:32,597 AND THE FOUR PEDALS OF THE WHEEL 2976 02:02:32,597 --> 02:02:34,699 ARE FOCUSSED ON ALL THE NATIONAL 2977 02:02:34,699 --> 02:02:39,738 PRIORITIES FOR HEALTH. 2978 02:02:39,738 --> 02:02:41,506 ALL FIVE OVERARCHING OBJECTIVES 2979 02:02:41,506 --> 02:02:43,442 AND NOT ANY ONE IN ISOLATION. 2980 02:02:43,442 --> 02:02:45,677 I'LL START WITH ENGAGEMENT 2981 02:02:45,677 --> 02:02:46,812 BECAUSE IT'S THE OIL, IF YOU 2982 02:02:46,812 --> 02:02:48,213 WILL, THAT GOES THROUGH THE 2983 02:02:48,213 --> 02:02:49,948 WHOLE MACHINE OF OUR ACTIVITIES 2984 02:02:49,948 --> 02:02:58,824 TO MAKE ALL OF IT WORK. 2985 02:02:58,824 --> 02:03:02,994 THIS IS MAKING SURE PCORI IT'S 2986 02:03:02,994 --> 02:03:03,929 ENGAGED IN THE EVERY STEP OF THE 2987 02:03:03,929 --> 02:03:06,998 RESEARCH WE FUND INTEGRATING 2988 02:03:06,998 --> 02:03:08,333 PATIENT CENTEREDNESS IN THE WORK 2989 02:03:08,333 --> 02:03:11,102 WE DO. 2990 02:03:11,102 --> 02:03:13,305 THIS HAPPENS FROM YOU'VE HEARD 2991 02:03:13,305 --> 02:03:15,106 SOME OF HOW IT HAPPENED IN HOW 2992 02:03:15,106 --> 02:03:16,074 WE AS AN ORGANIZATION THINK AND 2993 02:03:16,074 --> 02:03:19,010 PLAN WHAT THE AGENDA WILL BE FOR 2994 02:03:19,010 --> 02:03:22,080 THE INSTITUTE BUT ALSO 2995 02:03:22,080 --> 02:03:22,948 THROUGHOUT THE RESEARCH 2996 02:03:22,948 --> 02:03:24,149 PROCESSES. 2997 02:03:24,149 --> 02:03:25,617 EXPECTING PATIENTS ARE INVOLVED 2998 02:03:25,617 --> 02:03:28,353 IN THINKING ABOUT WHAT STUDY 2999 02:03:28,353 --> 02:03:29,154 PROPOSALS CONFIRM AND THERE'S 3000 02:03:29,154 --> 02:03:31,122 MEANINGFUL PARTNERSHIPS WITH 3001 02:03:31,122 --> 02:03:33,258 PATIENTS AND COMMUNITIES WITHIN 3002 02:03:33,258 --> 02:03:35,727 EVERY STUDY AND THEY'RE ASSESSED 3003 02:03:35,727 --> 02:03:37,929 ON THOSE PLANS DURING MERIT 3004 02:03:37,929 --> 02:03:39,097 REVIEW AND THAT INCLUDES PATIENT 3005 02:03:39,097 --> 02:03:40,398 AND OTHER MERIT REVIEWERS 3006 02:03:40,398 --> 02:03:41,933 LOOKING AT THE PROJECTS AND 3007 02:03:41,933 --> 02:03:44,469 RATING THE PROJECTS AS THEY COME 3008 02:03:44,469 --> 02:03:44,703 THROUGH. 3009 02:03:44,703 --> 02:03:47,072 THIS GOES ON INTO STUDY CONDUCT 3010 02:03:47,072 --> 02:03:49,674 AFTER FUNDING DECISIONS ARE MADE 3011 02:03:49,674 --> 02:03:53,445 AND THROUGH OUR PEER-REVIEW 3012 02:03:53,445 --> 02:03:55,647 PROCESS, PCORI LOOKING PAST 3013 02:03:55,647 --> 02:03:58,550 STANDARD PUBLICATIONS AND HAVE A 3014 02:03:58,550 --> 02:04:01,186 PEER REVIEW PROCESS EVERY STUDY 3015 02:04:01,186 --> 02:04:04,022 IS FUNDED THROUGH AND LEADS TO 3016 02:04:04,022 --> 02:04:07,626 FINAL RESEARCH REPORTS OF EVERY 3017 02:04:07,626 --> 02:04:09,427 STUDY PUBLISHED ON OUR WEBSITE 3018 02:04:09,427 --> 02:04:11,796 TO MAKE SURE THE FINDINGS, 3019 02:04:11,796 --> 02:04:12,998 POSITIVE OR NEGATIVE WHETHER 3020 02:04:12,998 --> 02:04:14,099 THEY END UP IN ANOTHER 3021 02:04:14,099 --> 02:04:14,699 PUBLICATION OR NOT HAVE 3022 02:04:14,699 --> 02:04:17,135 AVAILABLE TO THE PUBLIC THROUGH 3023 02:04:17,135 --> 02:04:20,372 THE WEBSITE. 3024 02:04:20,372 --> 02:04:26,177 GOES ON TO THINKING OF 3025 02:04:26,177 --> 02:04:27,946 DISSEMINATION AND POLITICIAN 3026 02:04:27,946 --> 02:04:30,181 ANOTHER OF THE PEDALS AND NOT 3027 02:04:30,181 --> 02:04:33,418 ONLY FOCUS ON THE WAYS WE CAN 3028 02:04:33,418 --> 02:04:34,619 DISSEMINATE FROM THE STUDIES AND 3029 02:04:34,619 --> 02:04:39,324 FUND AWARDS TO SUPPORT 3030 02:04:39,324 --> 02:04:41,059 DISSEMINATION OF FINDINGS IN THE 3031 02:04:41,059 --> 02:04:44,996 FORM OF ENGAGEMENT AWARDS TO 3032 02:04:44,996 --> 02:04:46,765 COMMUNITIES FOR THE STUDY 3033 02:04:46,765 --> 02:04:48,066 POPULATIONS THAT WERE INVOLVED 3034 02:04:48,066 --> 02:04:50,201 IN DIFFERENT STUDIES, TO 3035 02:04:50,201 --> 02:04:53,572 DISSEMINATE AND MAKE FOLKS AWARE 3036 02:04:53,572 --> 02:04:55,040 AND MOVE TO IMPLEMENTATION 3037 02:04:55,040 --> 02:04:56,708 ACTIVITY TO TRY TO IMPLEMENT THE 3038 02:04:56,708 --> 02:04:58,076 FINDINGS IN DIFFERENT SCENARIOS 3039 02:04:58,076 --> 02:05:00,178 AND ONE OF THE ACTIVITIES WE'RE 3040 02:05:00,178 --> 02:05:01,913 PARTICULARLY EXCITED ABOUT RIGHT 3041 02:05:01,913 --> 02:05:04,683 NOW BECAUSE IT'S NEW AND IT'S 3042 02:05:04,683 --> 02:05:09,988 INNOVATIVE IN HOW IT THINKS OF 3043 02:05:09,988 --> 02:05:10,789 SCALING IMPLEMENTATION IS OUR 3044 02:05:10,789 --> 02:05:12,457 HEALTH SYSTEM INITIATIVE AND 3045 02:05:12,457 --> 02:05:14,192 WHERE WE HAVE 42 CENTERS AROUND 3046 02:05:14,192 --> 02:05:16,561 THE COUNTRY THAT WE'LL BE ABLE 3047 02:05:16,561 --> 02:05:18,730 TO TAKE SPECIFIC FINDINGS THAT 3048 02:05:18,730 --> 02:05:20,565 SHOW PROMISE FOR IMPLEMENTATION 3049 02:05:20,565 --> 02:05:23,702 BASED ON EARLIER WORK TO SCALE 3050 02:05:23,702 --> 02:05:25,904 IMPLEMENTATION ACROSS MANY 3051 02:05:25,904 --> 02:05:30,942 DIFFERENT TYPES OF HEALTH CARE 3052 02:05:30,942 --> 02:05:41,486 SETTINGS, MANY HOI TO SCALE AND 3053 02:05:45,490 --> 02:05:47,459 SCOPE GOING FORWARD SO A 3054 02:05:47,459 --> 02:05:54,099 POWERFUL WAY TO MOVE 3055 02:05:54,099 --> 02:05:57,335 PCORI-FUNDING AND ENABLE CER TO 3056 02:05:57,335 --> 02:05:59,437 GO FORWARD IN A PATIENT-CENTERED 3057 02:05:59,437 --> 02:06:04,442 WAY INCLUDING WORKFORCE AND 3058 02:06:04,442 --> 02:06:06,211 RESEARCH INFRASTRUCTURE A 3059 02:06:06,211 --> 02:06:07,846 FLAGSHIP COMPONENT IS THE 3060 02:06:07,846 --> 02:06:09,681 PATIENT CENTER OUTCOMES RESEARCH 3061 02:06:09,681 --> 02:06:11,016 NETWORK. 3062 02:06:11,016 --> 02:06:14,219 AGAIN, A NATIONAL NETWORK OF 3063 02:06:14,219 --> 02:06:18,123 NETWORKS IN THIS CASE THAT 3064 02:06:18,123 --> 02:06:20,225 INCLUDES SITES SPANNING 3065 02:06:20,225 --> 02:06:21,926 DIFFERENT TYPES OF CLINICAL CARE 3066 02:06:21,926 --> 02:06:22,594 SETTINGS. 3067 02:06:22,594 --> 02:06:26,197 SPANNING DIFFERENT POPULATIONS 3068 02:06:26,197 --> 02:06:30,201 REPRESENTATIVE OF THE U.S. TO BE 3069 02:06:30,201 --> 02:06:31,703 ABLE TO HAVE A SYSTEM THAT 3070 02:06:31,703 --> 02:06:33,538 BRINGS IN LONGITUDE INTO THE 3071 02:06:33,538 --> 02:06:35,073 INFORMATION FROM ELECTRONIC 3072 02:06:35,073 --> 02:06:38,209 HEALTH RECORDS ACROSS THE 3073 02:06:38,209 --> 02:06:39,377 COUNTRY ACCESSIBLE TO BE STUDIED 3074 02:06:39,377 --> 02:06:41,179 BY ANYONE IN THE COUNTRY. 3075 02:06:41,179 --> 02:06:44,249 SO THEY CAN COME IN AND MAKE 3076 02:06:44,249 --> 02:06:46,217 REQUESTS TO SEE INFORMATION 3077 02:06:46,217 --> 02:06:50,221 ABOUT THE DATA THAT ARE WITHIN 3078 02:06:50,221 --> 02:06:57,395 PR C -- PCORNA AND THE PATIENTS 3079 02:06:57,395 --> 02:06:58,229 ARE CONSENTED FOR ADDITIONAL 3080 02:06:58,229 --> 02:07:00,632 STUDIES AT THE SITES SO IT'S 3081 02:07:00,632 --> 02:07:04,169 POSSIBLE AS INVESTIGATORS MAYBE 3082 02:07:04,169 --> 02:07:05,637 COME FORWARD THROUGH THE FRONT 3083 02:07:05,637 --> 02:07:07,205 DOOR TO LEARN ABOUT PATIENT 3084 02:07:07,205 --> 02:07:09,107 POPULATIONS AND WHAT DATA MAY BE 3085 02:07:09,107 --> 02:07:10,408 AVAILABLE TO INITIATE NEW 3086 02:07:10,408 --> 02:07:11,342 STUDIES AND COLLABORATIONS WITH 3087 02:07:11,342 --> 02:07:15,513 THOSE ADVOCATORS. 3088 02:07:15,513 --> 02:07:16,514 -- INVESTIGATORS. 3089 02:07:16,514 --> 02:07:21,152 IT'S A UNIQUE RESOURCE TRYING TO 3090 02:07:21,152 --> 02:07:23,488 PROMOTE THAT CER WITH THE 3091 02:07:23,488 --> 02:07:24,322 PATIENT-CENTERED CORE THAT IS 3092 02:07:24,322 --> 02:07:28,626 NATIONAL IN SCOPE AND SCALE. 3093 02:07:28,626 --> 02:07:34,132 IT'S ALSO AT THE READY TO BE 3094 02:07:34,132 --> 02:07:36,935 USED. 3095 02:07:36,935 --> 02:07:37,969 BEFORE GOING FORWARD THINKING 3096 02:07:37,969 --> 02:07:42,607 HOW TO MOVE FROM THE HIGH-LEVEL 3097 02:07:42,607 --> 02:07:44,142 OBJECTIVES UP HAVING INPUT FROM 3098 02:07:44,142 --> 02:07:45,143 THE PUBLIC AND SPECIFIC 3099 02:07:45,143 --> 02:07:48,346 COMMUNITIES AND THINKING ABOUT 3100 02:07:48,346 --> 02:07:49,647 THE RESEARCH TOPICS THROUGH 3101 02:07:49,647 --> 02:07:52,150 WHICH WE'LL SEEK TO ADVANCE THE 3102 02:07:52,150 --> 02:07:52,484 GOALS. 3103 02:07:52,484 --> 02:07:54,986 IT'S STILL DEPENDENT ON AN 3104 02:07:54,986 --> 02:07:57,388 ONGOING STREAM OF ENGAGEMENT AND 3105 02:07:57,388 --> 02:07:58,123 INTERACTIONS AND DIALOGUE WITH 3106 02:07:58,123 --> 02:07:59,824 OUR COMMUNITIES. 3107 02:07:59,824 --> 02:08:02,827 BRINGING IN IDEAS UP AN ONGOING 3108 02:08:02,827 --> 02:08:04,996 WAY, CONTINUOUS WAY FROM 3109 02:08:04,996 --> 02:08:10,201 PATIENTS AND STAKEHOLDERS AND 3110 02:08:10,201 --> 02:08:14,572 CONSIDERING WHAT FUNDING WE HAVE 3111 02:08:14,572 --> 02:08:17,976 ALREADY PUT IN PLAY WHETHER WE 3112 02:08:17,976 --> 02:08:20,044 HAVE NEW QUESTIONS OR MAKING 3113 02:08:20,044 --> 02:08:22,013 SURE WE'RE SPENDING THE PUBLIC 3114 02:08:22,013 --> 02:08:24,482 RESOURCES WISELY. 3115 02:08:24,482 --> 02:08:26,851 ALL OVERSEEING THE BOARD OF 3116 02:08:26,851 --> 02:08:30,855 GOVERNS AND TO NOTE WE HAVE AN 3117 02:08:30,855 --> 02:08:32,791 OVERSIGHT BODY OF INDIVIDUALS 3118 02:08:32,791 --> 02:08:39,330 MAKING MANY OF THE PCORI 3119 02:08:39,330 --> 02:08:41,399 STAKEHOLDERS AND BRINGING THEM 3120 02:08:41,399 --> 02:08:44,135 FORWARD TO BEAR AND THIS HELPS 3121 02:08:44,135 --> 02:08:45,703 US STAY IN TOUCH IN A REGULAR 3122 02:08:45,703 --> 02:08:50,408 AND ONGOING WAY WHERE THE NEEDS 3123 02:08:50,408 --> 02:08:52,577 ARE FOR CER AND IMPORTANT 3124 02:08:52,577 --> 02:08:54,112 QUESTIONS FACING PATIENTS AGAIN 3125 02:08:54,112 --> 02:08:56,314 IN THE WAY IT AFFECTS THEIR 3126 02:08:56,314 --> 02:08:57,816 LIVES AND NOT NECESSARILY NOT 3127 02:08:57,816 --> 02:08:59,250 ALWAYS JUST ABOUT A PARTICULAR 3128 02:08:59,250 --> 02:09:00,518 DISEASE BUT WHAT SCREENING 3129 02:09:00,518 --> 02:09:03,188 PROGRAMS ARE MOST EFFECTIVE AND 3130 02:09:03,188 --> 02:09:04,722 WHAT SYSTEM OF INTERVENTIONS 3131 02:09:04,722 --> 02:09:05,824 MAKE THE DIFFERENCE FOR WHOM AND 3132 02:09:05,824 --> 02:09:08,426 THINKING HOW WE DO THAT GOING 3133 02:09:08,426 --> 02:09:08,960 FORWARD. 3134 02:09:08,960 --> 02:09:13,198 THIS IS HOW WE SAY IN TERMS OF 3135 02:09:13,198 --> 02:09:15,767 WHERE PCORI FOCUSES ITS FUNDING 3136 02:09:15,767 --> 02:09:17,101 AND OUR APPROACH IS ALWAYS 3137 02:09:17,101 --> 02:09:20,972 HAVING AN OPEN CALL FOR IDEAS 3138 02:09:20,972 --> 02:09:23,141 READY TO GO FORWARD THROUGH 3139 02:09:23,141 --> 02:09:25,877 MENGFUL PARTNERSHIPS WITH 3140 02:09:25,877 --> 02:09:29,914 PATIENTS AND RESEARCHERS 3141 02:09:29,914 --> 02:09:31,649 ADDRESSING NEEDS AND THROUGH 3142 02:09:31,649 --> 02:09:34,619 FUNDING CYCLES WE HAVE OPEN CALL 3143 02:09:34,619 --> 02:09:35,386 FOR STUDIES AND LARGER 3144 02:09:35,386 --> 02:09:38,223 INITIATIVE TO COME FORWARD AND 3145 02:09:38,223 --> 02:09:39,591 BE REVIEWED THROUGH THE MERIT 3146 02:09:39,591 --> 02:09:41,159 REVIEW PROCESS UP ADDITION TO 3147 02:09:41,159 --> 02:09:47,165 SPECIFIC MORE FOCUSSED FUNDING 3148 02:09:47,165 --> 02:09:49,167 OPPORTUNITIES AROUND PARTICU%A 3149 02:09:49,167 --> 02:09:50,401 TOPICS AND WE'LL TALK ABOUT THEM 3150 02:09:50,401 --> 02:09:53,104 MORE AND CALL THEM THE 3151 02:09:53,104 --> 02:09:55,974 COLLECTION OF HIGH LEVEL TOPIC 3152 02:09:55,974 --> 02:10:00,979 THEMES THE RESEARCH PROJECT 3153 02:10:00,979 --> 02:10:01,279 AGENDA. 3154 02:10:01,279 --> 02:10:06,084 AND THAT'S MEANT TO BE A DYNAMIC 3155 02:10:06,084 --> 02:10:07,585 TOOL RELYING ON THE RESEARCH 3156 02:10:07,585 --> 02:10:08,286 AGENDA TO GUIDE THE INDIVIDUAL 3157 02:10:08,286 --> 02:10:18,596 FUNDING DECISIONS. 3158 02:10:21,032 --> 02:10:24,235 AND THEY'RE HIGH LEVEL AND HAVE 3159 02:10:24,235 --> 02:10:25,703 DIFFERENT CHARACTERISTICS IN 3160 02:10:25,703 --> 02:10:26,971 TERMS OF SPECIFICITY OF THE 3161 02:10:26,971 --> 02:10:27,805 HEALTH CONDITION. 3162 02:10:27,805 --> 02:10:28,873 ALSO IMPORTANT TO NOTE JUST 3163 02:10:28,873 --> 02:10:30,775 BECAUSE WE HAVE TOPIC THEMES 3164 02:10:30,775 --> 02:10:35,880 FOCUSSED ON HEALTH CONDITIONS WE 3165 02:10:35,880 --> 02:10:37,582 STILL CONSIDER IN EVERY 3166 02:10:37,582 --> 02:10:38,883 OPPORTUNITY THE CHARACTERISTICS 3167 02:10:38,883 --> 02:10:39,918 AND TRAITS IMPORTANT TO 3168 02:10:39,918 --> 02:10:45,123 PATIENT'S LIVES AND HOW WE LIVE. 3169 02:10:45,123 --> 02:10:46,824 AND THINKING ABOUT HOW DOES IT 3170 02:10:46,824 --> 02:10:50,395 AFFECT US AND HOW WE WORK, LIVE 3171 02:10:50,395 --> 02:10:55,533 AND PLAY GOING FORWARD. 3172 02:10:55,533 --> 02:11:03,174 AND WE UPDATED THE SET OF TOPIC 3173 02:11:03,174 --> 02:11:05,343 THEMES TO INCLUDE THE THREE IN 3174 02:11:05,343 --> 02:11:05,610 YELLOW. 3175 02:11:05,610 --> 02:11:11,149 WE EXPECT THIS TO BE A WAY TO 3176 02:11:11,149 --> 02:11:13,151 REMAIN RESPONSIVE TO WHAT THE 3177 02:11:13,151 --> 02:11:14,152 GREATEST AND HIGHEST PRIORITY 3178 02:11:14,152 --> 02:11:15,820 NEEDS ARE ACROSS THE COMMUNITY 3179 02:11:15,820 --> 02:11:17,155 FOR CER EVIDENCE TO COME 3180 02:11:17,155 --> 02:11:24,796 FORWARD. 3181 02:11:24,796 --> 02:11:26,531 I'LL TRANSITION TO TALK ABOUT 3182 02:11:26,531 --> 02:11:28,933 HOW THE PATIENT-CENTERED 3183 02:11:28,933 --> 02:11:30,034 APPROACH CAN AFFECT THE WORK WE 3184 02:11:30,034 --> 02:11:31,369 DO THROUGHOUT THE LIFE CYCLE. 3185 02:11:31,369 --> 02:11:38,276 THIS IS THE STUDY FOCUSSED ON 3186 02:11:38,276 --> 02:11:39,677 COMPARED ANTIBIOTIC USE VERSUS 3187 02:11:39,677 --> 02:11:42,046 SURGERY FOR PATIENTS WITH 3188 02:11:42,046 --> 02:11:47,518 UNCOMPLICATED AP PPEN PEND SIG 3189 02:11:47,518 --> 02:11:51,990 IS -- APPENDICITIS AND IT 3190 02:11:51,990 --> 02:11:53,091 ENGAGED WITH THREE PATIENT 3191 02:11:53,091 --> 02:11:55,159 GROUPS AT VARIOUS LEVEL 3192 02:11:55,159 --> 02:11:57,628 INCLUDING THE PROVIDER GROUPS 3193 02:11:57,628 --> 02:11:58,529 AND NATIONAL ADVISORY BOARD WITH 3194 02:11:58,529 --> 02:12:03,601 PROFESSIONAL SOCIETIES AND 3195 02:12:03,601 --> 02:12:05,770 POLICY MAKERS AND OTHERS AS WELL 3196 02:12:05,770 --> 02:12:07,071 AS THE PATIENT ADVISORY BOARD. 3197 02:12:07,071 --> 02:12:11,509 THINKING ABOUT THOSE IN 3198 02:12:11,509 --> 02:12:15,847 PARTNERSHIPS WITH VARIOUS LEVEL 3199 02:12:15,847 --> 02:12:19,417 AND CONSIDERING AS THE STUDY IS 3200 02:12:19,417 --> 02:12:20,752 CONCEIVED WHAT THE NEEDS WILL BE 3201 02:12:20,752 --> 02:12:22,220 AT THE END FOR DECISION MAKING 3202 02:12:22,220 --> 02:12:28,192 PROCESSES. 3203 02:12:28,192 --> 02:12:34,065 MY PURPOSE IN SHARING IS TO NOTE 3204 02:12:34,065 --> 02:12:38,836 TAKING TOGETHER CAN PROVIDE 3205 02:12:38,836 --> 02:12:40,171 USEFUL INFORMATION FOR PATIENTS 3206 02:12:40,171 --> 02:12:42,206 AND CAREGIVERS OF WHICH 3207 02:12:42,206 --> 02:12:47,078 TREATMENT HAVE TO FOLLOW. 3208 02:12:47,078 --> 02:12:48,813 THESE FINDINGS ALSO WERE 3209 02:12:48,813 --> 02:12:50,948 FORTUNATELY AVAILABLE AND TAKEN 3210 02:12:50,948 --> 02:12:53,684 UP DURING THE PANDEMIC AND 3211 02:12:53,684 --> 02:12:54,819 INCORPORATED INTO CLINICAL 3212 02:12:54,819 --> 02:12:57,855 GUIDELINES AS SOMETHING FOR 3213 02:12:57,855 --> 02:12:59,791 PROVIDERS TO CONSIDER WHERE IF 3214 02:12:59,791 --> 02:13:02,727 WE THINK THAT THE SHORT TERM 3215 02:13:02,727 --> 02:13:05,830 THERE WAS DEFINITELY STRONG 3216 02:13:05,830 --> 02:13:07,432 INCENTIVE WHY ANTIBIOTICS COULD 3217 02:13:07,432 --> 02:13:09,267 BE EQUAL TO SURGERY OVER TIME 3218 02:13:09,267 --> 02:13:10,201 BUT DURING THE PANDEMIC WEREN'T 3219 02:13:10,201 --> 02:13:13,204 BEING ADMITTED TO THE HOSPITAL 3220 02:13:13,204 --> 02:13:15,406 CARRIED A DIFFERENT RISK FACTOR 3221 02:13:15,406 --> 02:13:18,076 THAN PERHAPS NOW OR OTHER TIMES 3222 02:13:18,076 --> 02:13:20,912 IT'S UCHLS TO MAKE ASSESSMENT 3223 02:13:20,912 --> 02:13:23,714 THE BEST INTEREST OF THE 3224 02:13:23,714 --> 02:13:24,248 PATIENT. 3225 02:13:24,248 --> 02:13:28,119 THIS WAS TAKEN UP TO CLINICAL 3226 02:13:28,119 --> 02:13:30,054 GUIDELINES FOR SURGEONS AT THE 3227 02:13:30,054 --> 02:13:31,089 TIME TO BE CONSIDERED AND THAT'S 3228 02:13:31,089 --> 02:13:33,124 AN IMPORTANT MEASURE IN TERMS OF 3229 02:13:33,124 --> 02:13:36,327 THE UPTAKE HAPPENING AND IS THE 3230 02:13:36,327 --> 02:13:37,929 FUNDING PCORI IS PUTTING INTO 3231 02:13:37,929 --> 02:13:44,268 PLAY MAKING A DIFFERENCE FOR 3232 02:13:44,268 --> 02:13:47,004 PATIENTS IS THERE WAS AN 3233 02:13:47,004 --> 02:13:48,406 EVERYDAY UPDATE WE DISSEMINATED 3234 02:13:48,406 --> 02:13:49,707 TO DO WHAT WE COULD DO AND REACH 3235 02:13:49,707 --> 02:13:52,210 THE AUDIENCES WE COULD. 3236 02:13:52,210 --> 02:13:55,947 WE ALSO ARE WORKING ON 3237 02:13:55,947 --> 02:13:56,914 IMPLEMENTATION PROGRAMS TO TEST 3238 02:13:56,914 --> 02:13:58,316 IMPLEMENTATION AND LEARN HOW TO 3239 02:13:58,316 --> 02:14:02,453 GET THE INFORMATION OUT AND HAVE 3240 02:14:02,453 --> 02:14:04,422 IT AFFECT PATIENTS' LIVES AND 3241 02:14:04,422 --> 02:14:05,723 DAY TO DAY BASIS. 3242 02:14:05,723 --> 02:14:10,194 THERE'S AN EXAMPLE OF THE 3243 02:14:10,194 --> 02:14:11,262 DIFFERENT TOUCHES PCORI CAN HAVE 3244 02:14:11,262 --> 02:14:13,264 IN FUNDING THE RESEARCH THAT CAN 3245 02:14:13,264 --> 02:14:15,533 MAKE A DIFFERENCE AND INFORM 3246 02:14:15,533 --> 02:14:20,771 CHOICES THROUGHOUT THE CONDUCT 3247 02:14:20,771 --> 02:14:25,776 OF THE RESEARCH. 3248 02:14:25,776 --> 02:14:29,046 THERE'S ONE LAST FACET TALKING 3249 02:14:29,046 --> 02:14:31,716 ABOUT WHAT IS FUNDAMENTAL TO HOW 3250 02:14:31,716 --> 02:14:32,950 PCORI OPERATES AND KEEPS US TRUE 3251 02:14:32,950 --> 02:14:35,720 TO THE PATIENT-CENTERED APPROACH 3252 02:14:35,720 --> 02:14:38,189 AND LENS IS PCORI ACTING AS A 3253 02:14:38,189 --> 02:14:39,123 LEARNING ORGANIZATION. 3254 02:14:39,123 --> 02:14:41,492 I WON'T WALK THROUGH THE 3255 02:14:41,492 --> 02:14:42,126 COMPLICATED GRAPHIC AND TO 3256 02:14:42,126 --> 02:14:43,895 DEMONSTRATE ON THE LEFT SIDE WE 3257 02:14:43,895 --> 02:14:46,964 SEE THE LARGE HIGH-LEVEL OVER 3258 02:14:46,964 --> 02:14:48,599 ARCHING AND MUTUALLY REINFORCING 3259 02:14:48,599 --> 02:14:49,567 GOALS FOR THE NATIONAL 3260 02:14:49,567 --> 02:14:50,735 PRIORITIES OF HEALTH. 3261 02:14:50,735 --> 02:14:52,703 ON THE FAR RIGHT THE 3262 02:14:52,703 --> 02:14:54,939 ASPIRATIONAL IMPACT WE HOPE TO 3263 02:14:54,939 --> 02:14:57,542 HAVE IN TERMS OF IMPROVING 3264 02:14:57,542 --> 02:15:01,379 HEALTH AND MAKE SURE THERE'S 3265 02:15:01,379 --> 02:15:08,953 EQUITABLE HEALTH CARE IN PLACE. 3266 02:15:08,953 --> 02:15:11,756 WHAT'S AT THE CORE OF PCORI THE 3267 02:15:11,756 --> 02:15:16,661 CONSTANT AND ONGOING MONITORING 3268 02:15:16,661 --> 02:15:17,595 OF PROGRESS AND MEASURE SUCCESS 3269 02:15:17,595 --> 02:15:20,731 IN TERMS OF GETTING NFLS OUT 3270 02:15:20,731 --> 02:15:22,366 THAT'S FUL IN A TRUSTED CAPACITY 3271 02:15:22,366 --> 02:15:24,135 FOR PATIENTS TO USE. 3272 02:15:24,135 --> 02:15:28,039 AGAIN WE LOOK THROUGH THE 3273 02:15:28,039 --> 02:15:32,643 DIFFERENT STAGES OF THE RINGS 3274 02:15:32,643 --> 02:15:33,244 LOOKING TO SEE THE EVIDENCE 3275 02:15:33,244 --> 02:15:35,179 BEING PRODUCED THROUGH FUNDING 3276 02:15:35,179 --> 02:15:36,881 MAKING A DIFFERENCE TO PATIENTS 3277 02:15:36,881 --> 02:15:37,248 AND PROVIDERS. 3278 02:15:37,248 --> 02:15:40,351 ARE WE HELPING TO CREATE A 3279 02:15:40,351 --> 02:15:45,356 CULTURE WITH CAPACITY FOR 3280 02:15:45,356 --> 02:15:46,290 PATIENT-CENTERED CER AND IS IT 3281 02:15:46,290 --> 02:15:47,758 USED IN PRACTICE AND ARE WE ABLE 3282 02:15:47,758 --> 02:15:51,963 TO TRANSFORM THIS CULTURE AND 3283 02:15:51,963 --> 02:15:53,130 PATIENT CENTEREDNESS BEYOND THE 3284 02:15:53,130 --> 02:15:53,864 WORK WE FUND. 3285 02:15:53,864 --> 02:15:56,400 WE'RE A SMALL FUNDER SO WE HAVE 3286 02:15:56,400 --> 02:16:02,206 BIGGER DREAMS IN HOW TO HAVE AN 3287 02:16:02,206 --> 02:16:02,807 IMPACT. 3288 02:16:02,807 --> 02:16:08,479 THE LAST SLIDE LOOKING FOR THE 3289 02:16:08,479 --> 02:16:10,214 SIGNALS OF IMPACT AND FROM THE 3290 02:16:10,214 --> 02:16:11,115 RESULTS PERSPECTIVE WHAT WE CAN 3291 02:16:11,115 --> 02:16:14,919 DO TO MAKE SURE RESULTS ARE 3292 02:16:14,919 --> 02:16:15,853 DISSEMINATED IN THE FAR LEFT 3293 02:16:15,853 --> 02:16:18,556 MOVING TO RESULTS AND FINDINGS 3294 02:16:18,556 --> 02:16:20,791 TAKEN INTO PRACTICE AND HOW ARE 3295 02:16:20,791 --> 02:16:22,960 THEY HAVING AN IMPACT ON 3296 02:16:22,960 --> 02:16:24,161 PATIENTS AND HEALTH CARE. 3297 02:16:24,161 --> 02:16:26,797 THIS IS A LONG TERM PERSPECTIVE 3298 02:16:26,797 --> 02:16:28,733 AND THINGS WE DON'T HAVE ANSWERS 3299 02:16:28,733 --> 02:16:30,768 TO WE CAN TRACT. 3300 02:16:30,768 --> 02:16:32,770 THIS TAKES TIME. 3301 02:16:32,770 --> 02:16:37,174 SO THIS IS SOMETHING AS PCORI IS 3302 02:16:37,174 --> 02:16:39,210 NOW ENTERING ITS SECOND DECADE 3303 02:16:39,210 --> 02:16:40,711 WE'RE STARTING TO LOOK AT MORE 3304 02:16:40,711 --> 02:16:42,780 AND MORE CLEARLY BUT IT'S GOING 3305 02:16:42,780 --> 02:16:44,515 TO BE AN ONGOING PROCESS AND 3306 02:16:44,515 --> 02:16:46,050 THERE'S SO MUCH DATA YET TO COME 3307 02:16:46,050 --> 02:16:48,019 AND LEARN AND FEEDBACK INTO HOW 3308 02:16:48,019 --> 02:16:50,221 WE ARE DOING OUR DAY TO DAY 3309 02:16:50,221 --> 02:16:50,421 WORK. 3310 02:16:50,421 --> 02:16:57,561 I'LL STOP THERE. 3311 02:16:57,561 --> 02:16:59,563 >> THANK YOU, DR. RODRIGUEZ. 3312 02:16:59,563 --> 02:17:07,071 WE'LL HAVE QUESTION AND ANSWERS 3313 02:17:07,071 --> 02:17:12,576 AFTER THE PANEL PRESENTATIONS. 3314 02:17:12,576 --> 02:17:22,920 NEXT IS OUR SPEAKER. 3315 02:17:23,721 --> 02:17:27,591 >> I OVERSEE THE PARTNERSHIP 3316 02:17:27,591 --> 02:17:29,627 PROGRAMS WHEN I'LL TALK ABOUT 3317 02:17:29,627 --> 02:17:29,827 TODAY. 3318 02:17:29,827 --> 02:17:31,062 FOR THOSE WHO ARE NOT FAMILIAR 3319 02:17:31,062 --> 02:17:33,631 WITH THE FOUNDATION, WE'RE 3320 02:17:33,631 --> 02:17:35,299 CHARTERED BY CONGRESS IN 1996 TO 3321 02:17:35,299 --> 02:17:37,335 SUPPORT THE MISSION OF THE NIH. 3322 02:17:37,335 --> 02:17:41,572 WE HAVE THE UNIQUE ABILITY TO 3323 02:17:41,572 --> 02:17:43,974 TRANSFER FUNDING FROM PRIVATE 3324 02:17:43,974 --> 02:17:47,211 ENTITIES TO THE NIH AND VICE 3325 02:17:47,211 --> 02:17:49,080 VERSA AND WE USE THAT 3326 02:17:49,080 --> 02:17:50,948 FOUNDATIONAL WORK TO BUILD 3327 02:17:50,948 --> 02:17:55,686 PUBLIC-PRIVATE PARTNERSHIPS AND 3328 02:17:55,686 --> 02:17:57,955 FOCUS LARGELY IN THE 3329 02:17:57,955 --> 02:17:59,223 PRE-COMPETITIVE SPACE FOCUSSING 3330 02:17:59,223 --> 02:18:04,662 ON TRANSLATIONAL SCIENCE EARLIER 3331 02:18:04,662 --> 02:18:12,169 IN THE PROCESS. 3332 02:18:12,169 --> 02:18:14,071 WE WORK WITH MULTIPLE 3333 02:18:14,071 --> 02:18:14,872 STAKEHOLDERS, NIH OUR MOST 3334 02:18:14,872 --> 02:18:16,207 IMPORTANT PARTNER AND OTHER 3335 02:18:16,207 --> 02:18:19,110 GOVERNMENT AGENCIES AND FDA IN 3336 02:18:19,110 --> 02:18:20,211 PARTICULAR IS INVOLVED IN MANY 3337 02:18:20,211 --> 02:18:22,046 OF OUR PROGRAMS. 3338 02:18:22,046 --> 02:18:23,147 WE WORK WITH LIFE SCIENCE 3339 02:18:23,147 --> 02:18:25,649 COMPANIES AND ACADEMIA AND I 3340 02:18:25,649 --> 02:18:28,119 WOULD SAY MOST IMPORTANTLY WORK 3341 02:18:28,119 --> 02:18:30,788 WITH FOUNDATIONS AND PATIENT 3342 02:18:30,788 --> 02:18:31,122 ORGANIZATIONS. 3343 02:18:31,122 --> 02:18:33,324 MY FORMER LIFE FOR ALMOST A 3344 02:18:33,324 --> 02:18:36,460 DECADE I WAS THE CHIEF 3345 02:18:36,460 --> 02:18:37,795 INNOVATION OFFICER AT GENETIC 3346 02:18:37,795 --> 02:18:40,498 ALLIANCE WORKING ON GENETIC AND 3347 02:18:40,498 --> 02:18:41,699 RARE DISEASES AND SO WHEN I 3348 02:18:41,699 --> 02:18:45,069 JOINED THE FOUNDATION I WAS VERY 3349 02:18:45,069 --> 02:18:46,937 EXCITED ABOUT THE WORK THAT WE 3350 02:18:46,937 --> 02:18:49,707 DO TO MOVE THE NEEDLE IN THE 3351 02:18:49,707 --> 02:18:53,077 TRANSLATIONAL SCIENCE SPACE. 3352 02:18:53,077 --> 02:18:54,478 THIS IS A SPACE THAT PEOPLE 3353 02:18:54,478 --> 02:18:58,215 REACH INTO AND DABBLE INTO BUT 3354 02:18:58,215 --> 02:19:04,054 NO ONE TRULY OWNS AND WHAT WE 3355 02:19:04,054 --> 02:19:14,465 WORK ON IN THE SPACE- . 3356 02:19:20,771 --> 02:19:23,841 WE WENT EVERYONE AT THE TABLE 3357 02:19:23,841 --> 02:19:24,842 THROUGH TO IMPLEMENTATION AND 3358 02:19:24,842 --> 02:19:26,076 DISSEMINATION OF RESULTS. 3359 02:19:26,076 --> 02:19:31,816 THAT IS CORE TO WHAT WE DO. 3360 02:19:31,816 --> 02:19:33,918 WE HAVE RAISED A LITTLE OVER 3361 02:19:33,918 --> 02:19:36,954 $1.5 BILLION FROM PRIVATE 3362 02:19:36,954 --> 02:19:37,788 ENTITIES. 3363 02:19:37,788 --> 02:19:39,857 OBVIOUSLY THAT NUMBER IS LARGER 3364 02:19:39,857 --> 02:19:41,659 WHEN YOU CONSIDER THE PUBLIC 3365 02:19:41,659 --> 02:19:42,860 INVESTMENT THAT IS MADE ON 3366 02:19:42,860 --> 02:19:46,197 PROGRAMS THAT WE HELP 3367 02:19:46,197 --> 02:19:49,567 FACILITATE. 3368 02:19:49,567 --> 02:19:52,136 WE HAVE OVER 122 ACTIVE PROGRAMS 3369 02:19:52,136 --> 02:19:56,874 RANGING FROM $2 MILLION TO $220 3370 02:19:56,874 --> 02:19:58,976 MILLION OR LARGER IF YOU LOOK AT 3371 02:19:58,976 --> 02:20:00,811 SOME COVID WORK AND 90 CENTS OF 3372 02:20:00,811 --> 02:20:02,580 EVERY DOLLAR WE RAISE GOES 3373 02:20:02,580 --> 02:20:03,848 DIRECTLY TO THE PROGRAMS. 3374 02:20:03,848 --> 02:20:08,486 OUR WORK IS PRIMARILY IN THREE 3375 02:20:08,486 --> 02:20:08,719 AREAS. 3376 02:20:08,719 --> 02:20:11,021 AS MENTIONED IN THE 3377 02:20:11,021 --> 02:20:13,123 TRANSLATIONAL SPACE, PREVENTION, 3378 02:20:13,123 --> 02:20:14,658 THERAPIES AND DIAGNOSTICS AND 3379 02:20:14,658 --> 02:20:15,226 POTENTIAL CURES. 3380 02:20:15,226 --> 02:20:18,128 WE ALSO DO QUITE A BIT OF WORK 3381 02:20:18,128 --> 02:20:19,263 IN THE POPULATION HEALTH AND 3382 02:20:19,263 --> 02:20:20,931 GLOBAL HEALTH SPACE AND THEN WE 3383 02:20:20,931 --> 02:20:22,399 DO WORK TO CELEBRATE AND TRAIN 3384 02:20:22,399 --> 02:20:23,968 THE NEXT GENERATION OF 3385 02:20:23,968 --> 02:20:26,170 SCIENTISTS AND I'LL TOUCH ON 3386 02:20:26,170 --> 02:20:27,938 THOSE LATTER TWO BRIEFLY BUT I'M 3387 02:20:27,938 --> 02:20:33,511 GOING TO PRIMARILY FOCUS ON THE 3388 02:20:33,511 --> 02:20:43,721 FIRST TODAY. 3389 02:20:45,055 --> 02:20:49,827 IT'S CHALLENGING TO DISTILL INTO 3390 02:20:49,827 --> 02:20:50,661 THIS PRESENTATION WHILE GIVING A 3391 02:20:50,661 --> 02:20:51,896 SENSE HOW TO USE OUR MODEL. 3392 02:20:51,896 --> 02:20:55,165 WE'RE ENGAGED WITH OUR MODELS. 3393 02:20:55,165 --> 02:20:57,935 SO THE FIRST EXAMPLE IS A 3394 02:20:57,935 --> 02:21:03,240 PROGRAM THAT I OVERSEE THE 3395 02:21:03,240 --> 02:21:04,842 ACCELERATING MEDICINE 3396 02:21:04,842 --> 02:21:06,176 PARTNERSHIP AND WE JUST 3397 02:21:06,176 --> 02:21:08,579 CELEBRATED THE 10-YEAR AT THE 3398 02:21:08,579 --> 02:21:14,652 BEGINNING OF THIS YEAR. 3399 02:21:14,652 --> 02:21:20,624 WE FUNDED AND LAUNCHED 12 3400 02:21:20,624 --> 02:21:28,332 PROGRAMS RANGING FROM 50 MILLION 3401 02:21:28,332 --> 02:21:32,002 AND THE FUNDAMENTAL ASPECT IS 3402 02:21:32,002 --> 02:21:33,837 THEY HAVE INTEREST IN INVESTMENT 3403 02:21:33,837 --> 02:21:36,941 FROM ONE OR MULTIPLE INSTITUTE 3404 02:21:36,941 --> 02:21:39,577 OR CENTERS WITHIN THE NIH 3405 02:21:39,577 --> 02:21:40,678 MATCHED BY INVESTMENT AND 3406 02:21:40,678 --> 02:21:42,780 FUNDING FROM MULTIPLE COMPANIES 3407 02:21:42,780 --> 02:21:46,150 ACROSS THE SECTOR AS WELL AS 3408 02:21:46,150 --> 02:21:46,617 PATIENT ORGANIZATIONS. 3409 02:21:46,617 --> 02:21:51,722 AND THAT PARTNERSHIP IS CORE TO 3410 02:21:51,722 --> 02:21:52,356 THE MODEL. 3411 02:21:52,356 --> 02:21:53,123 EACH AIM DIFFERENT. 3412 02:21:53,123 --> 02:21:54,258 THERE'S QUITE A RANGE BUT FOR 3413 02:21:54,258 --> 02:21:59,463 THE MOST PART THEY LARGELY FALL 3414 02:21:59,463 --> 02:22:03,367 INTO TARGET SPACE, BIOMARKER 3415 02:22:03,367 --> 02:22:06,570 DEVELOPMENT SPACE, UNDERSTANDING 3416 02:22:06,570 --> 02:22:08,572 THE MOLECULAR UNDER PINNINGS OF 3417 02:22:08,572 --> 02:22:10,374 DISEASE AND THERE'S SOME 3418 02:22:10,374 --> 02:22:10,674 SKIPPINGSES. 3419 02:22:10,674 --> 02:22:12,610 THE SECOND PROJECT IS TO GIVE A 3420 02:22:12,610 --> 02:22:14,445 SENSE OF THE RANGE. 3421 02:22:14,445 --> 02:22:17,348 THE AMP BESPOKE GENE THERAPY 3422 02:22:17,348 --> 02:22:19,383 CONSORTIUM, FOR EXAMPLE, IS 3423 02:22:19,383 --> 02:22:20,384 FOCUSSED LATER IN THE 3424 02:22:20,384 --> 02:22:22,186 TRANSLATIONAL PIPELINE 3425 02:22:22,186 --> 02:22:24,054 ESPECIALLY FOCUSSED ON GENE 3426 02:22:24,054 --> 02:22:27,891 THERAPY FORERARE DISEASES THAT 3427 02:22:27,891 --> 02:22:31,095 MIGHT NOT HAVE -- FOR RARE 3428 02:22:31,095 --> 02:22:35,799 DISEASES AND LOOKING AT 3429 02:22:35,799 --> 02:22:41,205 STREAMLINING THE PATHWAY FOR 3430 02:22:41,205 --> 02:22:43,874 GENE THERAPY AND BY FIRST 3431 02:22:43,874 --> 02:22:48,846 RUNNING FIRST IN HUMAN TRIALS 3432 02:22:48,846 --> 02:22:52,650 FOR DIFFERENT DISEASE AREAS AND 3433 02:22:52,650 --> 02:22:54,985 35 PARTNERS AND INSTITUTES AND 3434 02:22:54,985 --> 02:22:56,020 COMPANIES AND PATIENTS. 3435 02:22:56,020 --> 02:22:59,923 IT'S QUITE A DIVERSE RANGE OF 3436 02:22:59,923 --> 02:23:01,992 PARTIES AND ALL THOSE 3437 02:23:01,992 --> 02:23:04,495 STAKEHOLDERS ARE ACTIVE 3438 02:23:04,495 --> 02:23:06,096 PARTICIPANT PANTS IN THE WORK 3439 02:23:06,096 --> 02:23:07,464 GROUP THEY'RE IN THE ADVISING 3440 02:23:07,464 --> 02:23:09,833 THEY'RE PARTICIPATING IN THE 3441 02:23:09,833 --> 02:23:10,801 DEVELOPMENT OF THE REGULATORY 3442 02:23:10,801 --> 02:23:11,502 FRAMEWORK. 3443 02:23:11,502 --> 02:23:17,107 I'LL TALK ABOUT AN EXAMPLE OF 3444 02:23:17,107 --> 02:23:24,448 THE MORE CLASSIC THE THIRD IS 3445 02:23:24,448 --> 02:23:25,749 THE BIOMARKER CONSORTIUM. 3446 02:23:25,749 --> 02:23:27,818 THEY FOCUSSED ON MORE DEFINED 3447 02:23:27,818 --> 02:23:29,486 CONTEXT AND USE, IDENTIFICATION 3448 02:23:29,486 --> 02:23:34,625 AND VALIDATION OF FIVE TYPES OF 3449 02:23:34,625 --> 02:23:34,925 BIOMARKERS. 3450 02:23:34,925 --> 02:23:37,227 WE HAVE FOUR FOUR THERAPEUTIC 3451 02:23:37,227 --> 02:23:40,264 AREAS WITHIN THE FOUNDATION AND 3452 02:23:40,264 --> 02:23:42,166 CANCER NEUROLOGY, IMPLEMENTATION 3453 02:23:42,166 --> 02:23:46,203 AND IMMUNITY AND METABOLICS WE 3454 02:23:46,203 --> 02:23:50,207 HAVE WORKING GROUPS IN RARE 3455 02:23:50,207 --> 02:23:54,078 DISEASE, WOMEN'S HEALTH. 3456 02:23:54,078 --> 02:23:57,414 AND HOW PROJECTS COME TO US AND 3457 02:23:57,414 --> 02:24:02,186 START WITH PARTICIPATING IN 3458 02:24:02,186 --> 02:24:04,488 INSTITUTE OR CENTER AND THE 3459 02:24:04,488 --> 02:24:06,857 BIOMARKER CONSORTIUM WE HAVE 3460 02:24:06,857 --> 02:24:07,758 STEERING COMMITTEES. 3461 02:24:07,758 --> 02:24:09,093 FOR EXAMPLE INFLAMMATION AND 3462 02:24:09,093 --> 02:24:13,363 IMMUNITY, WHICH I OVERSEE, EVERY 3463 02:24:13,363 --> 02:24:15,966 OTHER YEAR WE INVITE PEOPLE TO 3464 02:24:15,966 --> 02:24:17,201 BRING PITCHES AND INDUSTRY 3465 02:24:17,201 --> 02:24:22,206 STAKEHOLDERS AND ACADEMIC AND 3466 02:24:22,206 --> 02:24:24,475 GOVERNMENT STAKEHOLDERS AND LIVE 3467 02:24:24,475 --> 02:24:29,213 DESIGN THOSE PROGRAMS AT ROUND 3468 02:24:29,213 --> 02:24:31,014 TABLES AND FEASIBILITY AND 3469 02:24:31,014 --> 02:24:32,082 INTEREST AND COME UP WITH 3470 02:24:32,082 --> 02:24:35,586 PROJECTS THAT ALIGN THE INTEREST 3471 02:24:35,586 --> 02:24:37,387 AND INVESTMENT FROM THE PUBLIC 3472 02:24:37,387 --> 02:24:41,091 AND PRIVATE SECTOR TO BRING 3473 02:24:41,091 --> 02:24:44,895 TANGIBLE PROJECTS TO BE 3474 02:24:44,895 --> 02:24:46,497 IMPLEMENTED AND CHANGE CLINICAL 3475 02:24:46,497 --> 02:24:51,135 PRACTICE. 3476 02:24:51,135 --> 02:24:54,238 AND THEY REACH $3 TO $10 MILLION 3477 02:24:54,238 --> 02:24:55,205 IN SIZE. 3478 02:24:55,205 --> 02:24:57,040 OUR FDA AND NIH COLLEAGUES ARE 3479 02:24:57,040 --> 02:24:58,776 VERY ACTIVE EARLY IN THE WORKING 3480 02:24:58,776 --> 02:25:00,377 GROUPS AND STEERING COMMITTEE 3481 02:25:00,377 --> 02:25:02,212 FOR THE PROGRAMS AS WELL AND 3482 02:25:02,212 --> 02:25:03,647 LARGELY FUNDED BY PRIVATE SECTOR 3483 02:25:03,647 --> 02:25:09,987 OR PATIENTS. 3484 02:25:09,987 --> 02:25:14,158 AND WE HAVE PROGRAMS IN 3485 02:25:14,158 --> 02:25:16,393 OSTEOARTHRITIS AND FUNDING FOR A 3486 02:25:16,393 --> 02:25:19,429 PROGRAM IN SJOGREN'S RIGHT NOW 3487 02:25:19,429 --> 02:25:23,534 AND HAVE KIDNEY SAFETY AS WELL 3488 02:25:23,534 --> 02:25:26,036 AS AND BUILDING PROGRAMS IN 3489 02:25:26,036 --> 02:25:27,704 LUPUS AND SCLERODERMA AND A 3490 02:25:27,704 --> 02:25:28,305 NUMBER OF THINGS. 3491 02:25:28,305 --> 02:25:31,041 IN THE LEAD UP TO THAT MEETING 3492 02:25:31,041 --> 02:25:37,381 IT'S NOT LIKE AN RFP. 3493 02:25:37,381 --> 02:25:39,383 AND ONE STEP IS TO REACH OUT TO 3494 02:25:39,383 --> 02:25:44,188 STAKEHOLDER GROUPS WITHIN OUR 3495 02:25:44,188 --> 02:25:46,190 COMMUNITY AND WHO ARE YOU 3496 02:25:46,190 --> 02:25:48,158 FUNDING THAT WOULD BE 3497 02:25:48,158 --> 02:25:49,393 APPROPRIATE FOR PUBLIC-PRIVATE 3498 02:25:49,393 --> 02:25:50,627 PARTNERSHIP AND ACTIVELY WORK 3499 02:25:50,627 --> 02:25:52,830 WITH THEM TO HELP THEM GENERATE 3500 02:25:52,830 --> 02:25:54,231 AN APPROPRIATE PITCH IN THE 3501 02:25:54,231 --> 02:26:00,871 BIOMARKER DEVELOPMENT SPACE. 3502 02:26:00,871 --> 02:26:03,941 THE THIRD PROGRAM DOESN'T FALL 3503 02:26:03,941 --> 02:26:05,375 UNDER AN EXISTING MECHANISM BUT 3504 02:26:05,375 --> 02:26:08,278 BUILT AS A SPINOFF FROM CANCER 3505 02:26:08,278 --> 02:26:12,783 MOON SHOT A $220 MILLION PROGRAM 3506 02:26:12,783 --> 02:26:22,092 THAT WORKS WITH I THINK 16 3507 02:26:22,092 --> 02:26:22,793 PHARMACEUTICAL COMPANIES 3508 02:26:22,793 --> 02:26:25,395 FOCUSSED ON IMMUNO ONCOLOGY AND 3509 02:26:25,395 --> 02:26:27,631 DEVELOPMENT OF STANDARDIZED 3510 02:26:27,631 --> 02:26:33,003 ASSAYS AND BIOMARKERS FOR 3511 02:26:33,003 --> 02:26:38,709 DEVELOPMENT OF TRYING TO ADDRESS 3512 02:26:38,709 --> 02:26:42,646 COMBINATION THERAPY IN THE 3513 02:26:42,646 --> 02:26:44,882 DEVELOP OF THE ONCOLOGY SPACE 3514 02:26:44,882 --> 02:26:47,284 AND GOT EXTENDED ANOTHER FOUR 3515 02:26:47,284 --> 02:26:53,657 YEARS UNTIL 2026. 3516 02:26:53,657 --> 02:26:55,058 AND DURING THE PANDEMIC WE 3517 02:26:55,058 --> 02:26:56,460 FACILITATED AND HELPED BUILD THE 3518 02:26:56,460 --> 02:26:59,696 ACTIVE PROJECT IN THE 3519 02:26:59,696 --> 02:27:04,768 DEVELOPMENT OF THERAPEUTIC 3520 02:27:04,768 --> 02:27:09,973 INTERVENTIONS AND VACCINES AN 3521 02:27:09,973 --> 02:27:11,808 MASTER PROTOCOLS FOR BOTH 3522 02:27:11,808 --> 02:27:14,211 THERAPEUTICS AND VACCINES AND 3523 02:27:14,211 --> 02:27:20,951 THE INFRASTRUCTURE TO DO THAT. 3524 02:27:20,951 --> 02:27:23,186 WE DO SIMILAR WORK IN THE 3525 02:27:23,186 --> 02:27:23,720 POPULATION SPACE. 3526 02:27:23,720 --> 02:27:28,859 THIS WORK IS LARGELY FUNDED BY 3527 02:27:28,859 --> 02:27:29,393 PUBLIC FUNDING AND LARGE 3528 02:27:29,393 --> 02:27:35,966 FOUNDATION CONTRIBUTIONS. 3529 02:27:35,966 --> 02:27:38,602 AND YOU MAY BE FAMILIAR WITH OUR 3530 02:27:38,602 --> 02:27:39,436 LARGE SCIENTIFIC PROJECTS. 3531 02:27:39,436 --> 02:27:41,271 IN ADDITION TO THIS TYPE OF WORK 3532 02:27:41,271 --> 02:27:43,640 TO CELEBRATE AND TRAIN THE NEXT 3533 02:27:43,640 --> 02:27:46,209 GENERATION OF SCIENCE WE DO TRY 3534 02:27:46,209 --> 02:27:48,178 TO INTEGRATE THIS INTO OUR 3535 02:27:48,178 --> 02:27:50,547 INDIVIDUAL PROGRAM WORK. 3536 02:27:50,547 --> 02:27:51,715 ESPECIALLY MY BELIEF IS IF WE 3537 02:27:51,715 --> 02:27:53,784 DID A STUDY I WOULD LIKE TO DO 3538 02:27:53,784 --> 02:27:57,721 IT TO SHOW THE IMPACT OF 3539 02:27:57,721 --> 02:28:01,124 PARTICIPATING ON TEAM SCIENCE ON 3540 02:28:01,124 --> 02:28:03,727 INDIVIDUAL INVESTIGATOR'S CAREER 3541 02:28:03,727 --> 02:28:06,196 WE'D SEE A PROFOUND IMPACT IN 3542 02:28:06,196 --> 02:28:10,767 OUR MEDIATED DISEASE PROGRAM AS 3543 02:28:10,767 --> 02:28:13,670 WELL WITH SOME EARLY 3544 02:28:13,670 --> 02:28:14,338 INVESTIGATORS AND THE LEADERSHIP 3545 02:28:14,338 --> 02:28:24,648 SCHOLARS PROGRAM. 3546 02:28:33,623 --> 02:28:36,026 THERE'S ACTIVITY IN THE DISEASE 3547 02:28:36,026 --> 02:28:37,027 MAPPING AND DISEASE INTELLIGENCE 3548 02:28:37,027 --> 02:28:38,362 SPACE AND MAPPING THOSE TOGETHER 3549 02:28:38,362 --> 02:28:41,865 TO UNDERSTAND HOW TO ALIGN 3550 02:28:41,865 --> 02:28:43,934 PUBLIC AND PRIVATE INVESTMENT IS 3551 02:28:43,934 --> 02:28:45,936 AN ART, IT'S NOT A SCIENCE I'VE 3552 02:28:45,936 --> 02:28:48,005 LEARNED SINCE BEING AT THE 3553 02:28:48,005 --> 02:28:48,372 FOUNDATION. 3554 02:28:48,372 --> 02:28:50,607 IT'S INCREDIBLY IMPORTANT TO 3555 02:28:50,607 --> 02:28:53,276 REALIZE THE INVESTMENT WE'RE 3556 02:28:53,276 --> 02:28:58,615 MAKING WITH THE RESEARCH. 3557 02:28:58,615 --> 02:29:02,185 AND WE DESIGN TO BUILD THE 3558 02:29:02,185 --> 02:29:04,554 PROGRAMS COLLABORATIVELY. 3559 02:29:04,554 --> 02:29:06,289 WE ALL KNOW AND WE KNOW RESEARCH 3560 02:29:06,289 --> 02:29:08,925 PROJECTS ARE COMPLICATED BUT THE 3561 02:29:08,925 --> 02:29:10,060 HARD THINGS ARE WORTH DOING AND 3562 02:29:10,060 --> 02:29:17,300 IN THIS SPACE AS YOU KNOW IT 3563 02:29:17,300 --> 02:29:18,935 TAKES ALL PLAYERS TO DESIGN 3564 02:29:18,935 --> 02:29:24,107 SOMETHING THAT WILL BE USEFUL. 3565 02:29:24,107 --> 02:29:33,917 AFTER THAT WE DO BRING IN 3566 02:29:33,917 --> 02:29:36,019 PRIVATE INVESTORS AND WORK WITH 3567 02:29:36,019 --> 02:29:40,123 NIH COLLEAGUES TO IDENTIFY 3568 02:29:40,123 --> 02:29:41,658 PREFERABLY CROSS-INSTITUTE 3569 02:29:41,658 --> 02:29:44,094 INVESTMENT AND MANAGE THE 3570 02:29:44,094 --> 02:29:47,297 GOVERNANCE OF THE PROJECT AND 3571 02:29:47,297 --> 02:29:48,331 PROVIDE FINANCIAL STEWARDSHIP 3572 02:29:48,331 --> 02:29:51,501 VARYING FROM PROJECT TO PROJECT. 3573 02:29:51,501 --> 02:29:52,969 SOMETIMES WE TRANSFER A LARGE 3574 02:29:52,969 --> 02:29:55,572 AMOUNT TO THE NIH FOR ISSUING OF 3575 02:29:55,572 --> 02:29:57,541 AWARDS. 3576 02:29:57,541 --> 02:29:58,742 SOMETIMES WE ISSUE CONTRACTS 3577 02:29:58,742 --> 02:30:00,177 DIRECTLY. 3578 02:30:00,177 --> 02:30:02,045 IT DEPENDS ON THE NEEDS OF THE 3579 02:30:02,045 --> 02:30:02,279 PROJECT. 3580 02:30:02,279 --> 02:30:05,415 THE TOPIC TODAY IS ALSO WE 3581 02:30:05,415 --> 02:30:08,785 MONITOR THE PROGRESS OF THE 3582 02:30:08,785 --> 02:30:10,387 PROJECT AND HAVE A STRONG 3583 02:30:10,387 --> 02:30:10,620 IMPACT. 3584 02:30:10,620 --> 02:30:11,822 I'LL TALK A LITTLE BIT ABOUT 3585 02:30:11,822 --> 02:30:18,195 IMPACT AND HOW WE VIEW IMPACT A 3586 02:30:18,195 --> 02:30:18,995 LITTLE BIT DIFFERENTLY. 3587 02:30:18,995 --> 02:30:20,997 SO JUST AN EXAMPLE WITHIN MY 3588 02:30:20,997 --> 02:30:22,199 PORTFOLIO AND THERE ARE MANY 3589 02:30:22,199 --> 02:30:23,533 EXAMPLES I COULD USE BUT THIS IS 3590 02:30:23,533 --> 02:30:27,471 ONE I'M INTIMATELY FAMILIAR WITH 3591 02:30:27,471 --> 02:30:29,873 WHICH IS OUR AMP AIM. 3592 02:30:29,873 --> 02:30:35,278 THIS IS A SUCCESSOR PROJECT AND 3593 02:30:35,278 --> 02:30:42,819 THIS IS CHAIRED BY NAIMS AND 3594 02:30:42,819 --> 02:30:45,088 LUPUS RESEARCH ALLIANCE WE I 3595 02:30:45,088 --> 02:30:50,193 HAVE TO HAVE REPRESENTATION AT 3596 02:30:50,193 --> 02:30:52,262 THE HIGHEST LEVEL OF LEADERSHIP. 3597 02:30:52,262 --> 02:30:54,498 THIS IS A SUCCESSOR. 3598 02:30:54,498 --> 02:30:57,534 ONE OF OUR ORIGINAL AMPS 3599 02:30:57,534 --> 02:31:00,670 FOCUSSED ON RHEUMATOID ARTHRITIS 3600 02:31:00,670 --> 02:31:05,108 AND LUPUS, THAT REALLY FOCUSSED 3601 02:31:05,108 --> 02:31:06,109 ON DISEASE DECONSTRUCTION. 3602 02:31:06,109 --> 02:31:10,147 I IT WAS PIONEERED IN THE SINGLE 3603 02:31:10,147 --> 02:31:11,281 CELL TECHNOLOGY SPACE AND LOOKED 3604 02:31:11,281 --> 02:31:16,686 AT WHAT WAS HAPPENING WITHIN THE 3605 02:31:16,686 --> 02:31:23,126 CELLS AND TARGETS FOR THERAPIES 3606 02:31:23,126 --> 02:31:26,196 AND MOLECULAR CLASSIFICATION OF 3607 02:31:26,196 --> 02:31:27,964 DISEASE. 3608 02:31:27,964 --> 02:31:33,069 YOU SEE THIS IN REPRESENTATION 3609 02:31:33,069 --> 02:31:35,238 AT AMERICAN COLLEGE OF 3610 02:31:35,238 --> 02:31:36,239 RHEUMATOLOGY MEETING AND THE 3611 02:31:36,239 --> 02:31:40,443 PRESENTERS FROM THE 3612 02:31:40,443 --> 02:31:42,746 COLLABORATIVE AND AN AREA THAT 3613 02:31:42,746 --> 02:31:47,784 DOESN'T FREQUENTLY SEE THEM. 3614 02:31:47,784 --> 02:31:50,453 IT'S MORE THAN THAT. 3615 02:31:50,453 --> 02:31:54,958 IT'S THE FREQUENCY IN BIO 3616 02:31:54,958 --> 02:31:56,226 SCIENCE AND CHALLENGING DISEASES 3617 02:31:56,226 --> 02:32:01,765 TO LOOK AT STANDARD OPERATING 3618 02:32:01,765 --> 02:32:03,967 PROCEDURES THAT EXTEND FROM 3619 02:32:03,967 --> 02:32:07,537 ACADEMIA TO INDUSTRY AND THE 3620 02:32:07,537 --> 02:32:09,839 BRIDGE BETWEEN THE TWO SO WE CAN 3621 02:32:09,839 --> 02:32:11,041 DO CROSS-SITE STUDIES IN A 3622 02:32:11,041 --> 02:32:15,212 MEANINGFUL WAY. 3623 02:32:15,212 --> 02:32:16,746 IT IS REALLY UNDERSTANDING HOW 3624 02:32:16,746 --> 02:32:19,716 TO DO THE TECHNOLOGIES AND 3625 02:32:19,716 --> 02:32:20,350 FREQUENTLY EXPENSIVE 3626 02:32:20,350 --> 02:32:25,188 TECHNOLOGIES AND TAKE ADVANTAGE 3627 02:32:25,188 --> 02:32:31,494 OF THEM AND BIO STRATEGIES. 3628 02:32:31,494 --> 02:32:34,598 AND AMP AIM IS A $70 MILLION 3629 02:32:34,598 --> 02:32:35,799 INVESTMENT WE'RE HALFWAY THROUGH 3630 02:32:35,799 --> 02:32:38,835 AND EXPANDED THE DISEASE FOCUS 3631 02:32:38,835 --> 02:32:44,241 TO FOCUS ON PSORIATIC SPECTRUM 3632 02:32:44,241 --> 02:32:47,143 AND SJOGREN'S DISEASE FOCUSSED 3633 02:32:47,143 --> 02:32:52,716 ON MORE DISEASE RECONSTRUCTION 3634 02:32:52,716 --> 02:32:55,752 AND NEIGHBORHOODS AND PATHOLOGY 3635 02:32:55,752 --> 02:32:59,356 AND STATE OF THE ART TECHNOLOGY 3636 02:32:59,356 --> 02:33:00,657 TO UNDERSTAND THE MOLECULAR 3637 02:33:00,657 --> 02:33:03,927 UNDER PINNINGS OF THE DISEASES A 3638 02:33:03,927 --> 02:33:06,196 FOCUS ON EARLY DISEASE AS WELL 3639 02:33:06,196 --> 02:33:08,198 AS CROSS DISEASE STUDIES WHICH 3640 02:33:08,198 --> 02:33:10,367 IN THE AUTO IMMUNE SPACE IS 3641 02:33:10,367 --> 02:33:11,968 INCREDIBLY IMPORTANT. 3642 02:33:11,968 --> 02:33:14,838 WE'VE HAD TO GO BACK TO THE 3643 02:33:14,838 --> 02:33:15,438 DRAWING BOARD AFTER FAILED 3644 02:33:15,438 --> 02:33:17,340 CLINICAL TRIAL TO LOOK AT HOW WE 3645 02:33:17,340 --> 02:33:27,784 UNDERSTAND THESE DISEASES. 3646 02:33:28,385 --> 02:33:32,722 WE'RE ABLE TO DO PILOT STUDIES 3647 02:33:32,722 --> 02:33:35,692 AND I DO NOT HAVE MY Ph.D. 3648 02:33:35,692 --> 02:33:39,996 I WROTE MY UNDERGRADUATE THESIS 3649 02:33:39,996 --> 02:33:40,997 AND DID MASS SPEC ANALYSIS. 3650 02:33:40,997 --> 02:33:45,268 IT'S SO EXCITING TO SEE THE 3651 02:33:45,268 --> 02:33:47,203 TECHNOLOGIES THE ABILITY TO DO 3652 02:33:47,203 --> 02:33:51,207 SPECIAL SEQUENCING AND LAYER 3653 02:33:51,207 --> 02:33:53,176 OTHER TECHNOLOGIES ON TOP OF 3654 02:33:53,176 --> 02:33:56,179 THAT IS GAME CHANGING AND IT'S 3655 02:33:56,179 --> 02:33:58,315 EXCITING TO BE INVOLVED IN THIS. 3656 02:33:58,315 --> 02:34:01,718 AND AS YOU CAN SEE FROM THE 3657 02:34:01,718 --> 02:34:07,557 SLIDE THE HUGE RANGE OF SITES 3658 02:34:07,557 --> 02:34:07,824 INVOLVED. 3659 02:34:07,824 --> 02:34:09,893 THERE'S DISEASE FOCUSSED 3660 02:34:09,893 --> 02:34:14,731 MULTI-INSTITUTE TEAMS AND 3661 02:34:14,731 --> 02:34:17,334 SYSTEMS BIOLOGY AND FORCES AS 3662 02:34:17,334 --> 02:34:18,468 WELL. 3663 02:34:18,468 --> 02:34:19,436 AND THE FINAL PROJECT I WANT TO 3664 02:34:19,436 --> 02:34:23,940 TOUCH ON IS A PROJECT IN THE 3665 02:34:23,940 --> 02:34:26,209 DESIGN PHASE CALL SYSTEMS 3666 02:34:26,209 --> 02:34:36,619 BIOLOGY OF INFORMATION. 3667 02:34:39,322 --> 02:34:44,427 AND THIS TAKES ADVANTAGE OF THE 3668 02:34:44,427 --> 02:34:49,299 INVESTMENT TO CREATE USEFUL 3669 02:34:49,299 --> 02:34:54,404 ANALYSIS AND LONGITUDINAL 3670 02:34:54,404 --> 02:34:56,039 CLINICAL INFORMATION GENERATED 3671 02:34:56,039 --> 02:34:57,707 BY THOSE PROGRAMS AND THEY AIM 3672 02:34:57,707 --> 02:35:01,911 TO HAVE PUBLICALLY AVAILABLE 3673 02:35:01,911 --> 02:35:03,813 ACCESSIBLE DATA SETS IN AMP AIM 3674 02:35:03,813 --> 02:35:05,348 ACCESSIBLE IN THE PORTAL HOSTED 3675 02:35:05,348 --> 02:35:11,054 BY NIAMS. 3676 02:35:11,054 --> 02:35:12,422 AND THE INFRASTRUCTURE PIECE AND 3677 02:35:12,422 --> 02:35:14,591 THEN THE SCIENCE WE CAN DO WITH 3678 02:35:14,591 --> 02:35:14,758 IT. 3679 02:35:14,758 --> 02:35:17,327 AND THERE'S A PARALLEL PROJECT 3680 02:35:17,327 --> 02:35:18,561 FUNDED BY THE COMMON FUND. 3681 02:35:18,561 --> 02:35:26,069 THESE ARE INTERYALLY -- INTEGRAL 3682 02:35:26,069 --> 02:35:27,937 PROGRAMS DESIGN TO UNDERSTAND 3683 02:35:27,937 --> 02:35:29,539 HOW DIFFERENT DATA SETS CAN WORK 3684 02:35:29,539 --> 02:35:31,107 TOGETHER. 3685 02:35:31,107 --> 02:35:36,980 AND THIS JUST GIVES A SENSE OF 3686 02:35:36,980 --> 02:35:41,284 THE EARLY DATA SETS AVAILABLE 3687 02:35:41,284 --> 02:35:45,021 AND ALZHEIMER'S DISEASE, 3688 02:35:45,021 --> 02:35:46,189 PARKINSON'S DISEASE AND AMP AIM 3689 02:35:46,189 --> 02:35:48,024 AND SLE AS WELL. 3690 02:35:48,024 --> 02:35:50,193 THAT MODEL IS BUILD TO BE USED 3691 02:35:50,193 --> 02:35:52,061 WITH OUR FUTURE AMP DATA SETS AS 3692 02:35:52,061 --> 02:35:56,466 WELL AS OTHER OUTSIDE DATA SETS. 3693 02:35:56,466 --> 02:35:59,469 AND I BELIEVE THAT IS IT FOR ME. 3694 02:35:59,469 --> 02:36:03,206 THANK YOU. 3695 02:36:03,206 --> 02:36:04,073 >> THANK YOU VERY MUCH. 3696 02:36:04,073 --> 02:36:10,380 NEXT ON OUR LIST WE HAVE 3697 02:36:10,380 --> 02:36:12,849 REPRESENTATIVES FROM NIDDK, WE 3698 02:36:12,849 --> 02:36:17,086 HAVE DR. CHRISTINE MARIC-BILKAN, 3699 02:36:17,086 --> 02:36:24,160 DR. SUSAN MENDLEY, DR. DEEPAK 3700 02:36:24,160 --> 02:36:26,029 NIHALANI AND DR. IVONNE SCHULMAN 3701 02:36:26,029 --> 02:36:28,431 AND ALLOW THEM TO GIVE YOU THEIR 3702 02:36:28,431 --> 02:36:33,136 INDIVIDUAL TITLES IF I MAY. 3703 02:36:33,136 --> 02:36:36,840 >> I'M DEEPAK NIHALANI FROM THE 3704 02:36:36,840 --> 02:36:38,208 U.S. DIVISION OF THE NIDDK AND 3705 02:36:38,208 --> 02:36:39,409 WOULD LIKE TO THANK THE 3706 02:36:39,409 --> 02:36:42,912 ORGANIZERS FOR INVITING US FOR 3707 02:36:42,912 --> 02:36:43,313 THE PRESENTATION. 3708 02:36:43,313 --> 02:36:45,915 I'LL BE GIVING THE PRESENTATION 3709 02:36:45,915 --> 02:36:49,319 ON BEHALF OF MY COLLEAGUES WHO 3710 02:36:49,319 --> 02:36:53,356 ARE ALSO HERE WITH US AND 3711 02:36:53,356 --> 02:37:00,063 DR. SHULMAN THIS PRESENTATION 3712 02:37:00,063 --> 02:37:03,867 WE'LL DISCUSS THE PROGRAM THAT 3713 02:37:03,867 --> 02:37:09,339 CATERS TO DIVISION SUPPORT AND 3714 02:37:09,339 --> 02:37:17,146 PROVIDING SUPPORT TO THE 3715 02:37:17,146 --> 02:37:19,182 HEMATOLOGIC DISEASES. 3716 02:37:19,182 --> 02:37:21,251 AS THE NEEDS OF THE SCIENTIFIC 3717 02:37:21,251 --> 02:37:31,761 COMMUNITIES CHANGES IT WAS 3718 02:37:32,562 --> 02:37:33,062 DES 3719 02:37:33,062 --> 02:37:34,197 DECIDED THE PROGRAMS NEEDED TO 3720 02:37:34,197 --> 02:37:37,100 CHANGE AND DEVELOP AND SHARE 3721 02:37:37,100 --> 02:37:41,337 RESOURCES WITH THE COMMUNITY 3722 02:37:41,337 --> 02:37:43,940 THAT WILL HELP ADVANCE SCIENCE 3723 02:37:43,940 --> 02:37:46,142 AND ADDRESS GAPS IN 3724 02:37:46,142 --> 02:37:49,712 UNDERSTANDING AND AMELIORATION 3725 02:37:49,712 --> 02:37:52,448 OF KIDNEY AND OWE LOGIC DISEASES 3726 02:37:52,448 --> 02:37:55,919 AND PROMOTE NEW TALENT AND 3727 02:37:55,919 --> 02:38:01,090 DEVELOPMENT AND EXPANSION OF THE 3728 02:38:01,090 --> 02:38:02,425 KIDNEY WORKFORCE. 3729 02:38:02,425 --> 02:38:05,929 AND REALIZING THE INDIVIDUAL 3730 02:38:05,929 --> 02:38:07,530 RESEARCH CENTERS WERE SET UP 3731 02:38:07,530 --> 02:38:09,666 THROUGH DIFFERENT FUNDING 3732 02:38:09,666 --> 02:38:11,868 MECHANISMS AND THEY SUPPORT THE 3733 02:38:11,868 --> 02:38:16,105 FORMATION OF SPECIALIZED CENTERS 3734 02:38:16,105 --> 02:38:22,211 THAT FOCUSSED ON SERVING THE 3735 02:38:22,211 --> 02:38:27,951 PROGRAM GOALS AND DISEASES. 3736 02:38:27,951 --> 02:38:30,253 THE MAJORITY OF THE PROGRAMS ARE 3737 02:38:30,253 --> 02:38:32,488 CONGRESSIONALLY MANDATE AND 3738 02:38:32,488 --> 02:38:37,560 DISEASE SPECIFIC. 3739 02:38:37,560 --> 02:38:46,169 THESE ARE SOME OF THE KEY POINTS 3740 02:38:46,169 --> 02:38:48,771 THAT WERE REALIZED TO BE 3741 02:38:48,771 --> 02:38:52,141 INCLUDED IN THIS TRANSITION OF 3742 02:38:52,141 --> 02:39:00,383 THE CENTERS INTO THE CONSORTIUM. 3743 02:39:00,383 --> 02:39:03,319 WE IMPROVED TO THE COORDINATION 3744 02:39:03,319 --> 02:39:05,655 AND ADDRESS THE CHANGING 3745 02:39:05,655 --> 02:39:07,457 LANDSCAPE OF SCIENCE AND 3746 02:39:07,457 --> 02:39:09,125 HARMONIZE THE CENTERS. 3747 02:39:09,125 --> 02:39:09,993 IN ADDITION TO THESE THERE ARE 3748 02:39:09,993 --> 02:39:14,030 OTHER KEY FACTORS THAT WERE ALSO 3749 02:39:14,030 --> 02:39:16,366 PLAYING A PART IN REALIZING THE 3750 02:39:16,366 --> 02:39:21,404 NEED TO CHANGE THE PROGRAMS 3751 02:39:21,404 --> 02:39:26,643 WHICH WERE OUTREACH AND THE NEED 3752 02:39:26,643 --> 02:39:29,379 FOR INTERDISCIPLINARY SCIENCE 3753 02:39:29,379 --> 02:39:31,781 AND NEW RESOURCES AND TOOLS AND 3754 02:39:31,781 --> 02:39:34,217 IDENTIFICATION OF NOVEL 3755 02:39:34,217 --> 02:39:40,923 THERAPIES. 3756 02:39:40,923 --> 02:39:43,026 THEREFORE THEY WERE TRANSLATED 3757 02:39:43,026 --> 02:39:46,195 TO A NATIONWIDE EFFORT TO 3758 02:39:46,195 --> 02:39:53,436 ADDRESS RESEARCH. 3759 02:39:53,436 --> 02:39:55,371 THESE ARE CONGRESSIONALLY 3760 02:39:55,371 --> 02:39:57,540 MANDATED PROGRAMS AND ALSO SOME 3761 02:39:57,540 --> 02:39:59,375 OF THEM ARE DISEASE SPECIFIC. 3762 02:39:59,375 --> 02:40:01,911 THE FIRST ONE THE KIDNEY DISEASE 3763 02:40:01,911 --> 02:40:04,280 CENTERS IS ONE OF THE OLDEST 3764 02:40:04,280 --> 02:40:06,716 PROGRAMS OF THE GRANT CENTERS 3765 02:40:06,716 --> 02:40:08,951 AND INITIALLY ESTABLISHED IN 3766 02:40:08,951 --> 02:40:11,621 1986 BUT HAS NOW BEEN 3767 02:40:11,621 --> 02:40:15,525 RE-ESTABLISHED AS A PROGRAM 3768 02:40:15,525 --> 02:40:18,194 WHICH IS THE ALLIANCE 3769 02:40:18,194 --> 02:40:27,637 ESTABLISHED NOW 2003 AND THE 3770 02:40:27,637 --> 02:40:28,438 CONSORTIUM ESTABLISHED IN 2019 3771 02:40:28,438 --> 02:40:32,775 AND EACH OF THESE CENTERS FOCUS 3772 02:40:32,775 --> 02:40:34,977 ON ADVANCING RESEARCH IN THEIR 3773 02:40:34,977 --> 02:40:39,782 RELEVANT AREA OF RESEARCH WHICH 3774 02:40:39,782 --> 02:40:43,386 MAY INCLUDE MANY AREAS AND A 3775 02:40:43,386 --> 02:40:45,955 VARIETY OF RESOURCES INCLUDED 3776 02:40:45,955 --> 02:40:48,958 STATE OF THE ART TOOLS AND 3777 02:40:48,958 --> 02:40:51,861 DEATHS AND EXPERTISE ARE OFFERED 3778 02:40:51,861 --> 02:40:54,230 THROUGH THE PROGRAMS AND 3779 02:40:54,230 --> 02:41:00,937 CONSORTIA AND HELP THE 3780 02:41:00,937 --> 02:41:03,139 ADVANCEMENT OF DISEASES. 3781 02:41:03,139 --> 02:41:05,074 THE PURPOSE FOR THE PROGRAMS ARE 3782 02:41:05,074 --> 02:41:06,943 TO ENHANCE SHARING AND 3783 02:41:06,943 --> 02:41:09,545 DEVELOPMENT OF SPECIALIZED 3784 02:41:09,545 --> 02:41:12,181 RESOURCES THAT HELP SUPPORT THE 3785 02:41:12,181 --> 02:41:15,118 RESEARCH COMMUNITY IN ADVANCING 3786 02:41:15,118 --> 02:41:15,351 SCIENCE. 3787 02:41:15,351 --> 02:41:17,386 THEY ALSO ESTABLISH THE 3788 02:41:17,386 --> 02:41:19,555 FRAMEWORK TO INCREASE 3789 02:41:19,555 --> 02:41:20,223 COLLABORATION AND COORDINATION 3790 02:41:20,223 --> 02:41:21,891 AMONG RESEARCH SCIENTISTS, 3791 02:41:21,891 --> 02:41:23,659 CLINICIANS AND THE NIH THAT 3792 02:41:23,659 --> 02:41:29,398 HELPS PROMOTE THESE BASIC AND 3793 02:41:29,398 --> 02:41:31,300 CLINICAL RESEARCH AND NEW 3794 02:41:31,300 --> 02:41:37,039 TREATMENT AND PREVENTION. 3795 02:41:37,039 --> 02:41:39,909 THE PROGRAM ALSO HELPS DEVELOP A 3796 02:41:39,909 --> 02:41:49,919 COMMUNITY THAT ATTRACTS SCIENCE 3797 02:41:49,919 --> 02:41:55,725 AND SCIENTIFIC AND DIVERSE AND 3798 02:41:55,725 --> 02:41:57,360 DEVELOPMENT AND IMPLEMENTATION 3799 02:41:57,360 --> 02:42:01,998 OF DEVELOPED PROGRAMS THAT HELP 3800 02:42:01,998 --> 02:42:05,401 PROMOTE YOUNG SCIENTIST AND 3801 02:42:05,401 --> 02:42:10,373 EMERGING INVESTIGATORS. 3802 02:42:10,373 --> 02:42:14,210 SO NEXT I'M GOING TO BRIEFLY 3803 02:42:14,210 --> 02:42:17,713 DISCUSS ABOUT THE MEETING WHICH 3804 02:42:17,713 --> 02:42:19,382 IS OUR INTERAGENCY COORDINATING 3805 02:42:19,382 --> 02:42:19,649 COMMITTEE. 3806 02:42:19,649 --> 02:42:23,619 THIS IS ALSO MANDATED BY 3807 02:42:23,619 --> 02:42:27,690 CONGRESS IN 1987 AND IS GOING 3808 02:42:27,690 --> 02:42:29,926 THE PRIMARY GOAL FOR THE 3809 02:42:29,926 --> 02:42:32,361 COMMITTEE IS TO INTEGRATE 3810 02:42:32,361 --> 02:42:33,062 COOPERATION AND COLLABORATION 3811 02:42:33,062 --> 02:42:39,168 AMONG ALL THE AGENCIES THAT ARE 3812 02:42:39,168 --> 02:42:40,403 INVOLVED IN THE RESEARCH AND 3813 02:42:40,403 --> 02:42:46,209 ACTIVITIES AND RECOGNIZES THE 3814 02:42:46,209 --> 02:42:50,880 NEED FOR RESPONSE AND SOME OF 3815 02:42:50,880 --> 02:42:59,655 THE OBJECTIVES FOR INCLUDE 3816 02:42:59,655 --> 02:43:03,025 FEEDBACK ON PLANS AND IDEAS TO 3817 02:43:03,025 --> 02:43:05,394 HELP MOVE THE NEEDLE ON KIDNEY 3818 02:43:05,394 --> 02:43:08,898 DISEASES. 3819 02:43:08,898 --> 02:43:12,034 THIS IS A GRAPHIC REPRESENTATION 3820 02:43:12,034 --> 02:43:22,578 OF A BIRD'S-EYE VIEW OF CDC AND 3821 02:43:23,479 --> 02:43:25,648 NIDDK AND HIGHLIGHT THE 3822 02:43:25,648 --> 02:43:30,720 IMPORTANCE OF INTERAGENCY 3823 02:43:30,720 --> 02:43:31,120 COMMUNICATION. 3824 02:43:31,120 --> 02:43:35,424 TO THIS MEETING IT BRINGS THE 3825 02:43:35,424 --> 02:43:44,000 FACETS TOGETHER. 3826 02:43:44,000 --> 02:43:48,571 I HAVE AN ORGANIZER OF THE 3827 02:43:48,571 --> 02:43:49,205 MEETING IS AVAILABLE TO ANSWER 3828 02:43:49,205 --> 02:43:49,472 QUESTIONS. 3829 02:43:49,472 --> 02:43:56,512 THANK YOU. 3830 02:43:56,512 --> 02:43:58,214 >> WE'LL HAVE QUESTIONS AT THE 3831 02:43:58,214 --> 02:44:00,016 END AND ONE MORE SET OF 3832 02:44:00,016 --> 02:44:03,319 PRESENTATIONS FRE THIS COPD 3833 02:44:03,319 --> 02:44:07,990 ACTION PLAN, MR. JAMES KILEY AND 3834 02:44:07,990 --> 02:44:10,793 DR. NEYAL AMMARY-RISCH. 3835 02:44:10,793 --> 02:44:13,262 >> SORRY WE'RE NOT ABLE TO BE IN 3836 02:44:13,262 --> 02:44:15,231 PERSON BUT HERE TO HELP PRESENT 3837 02:44:15,231 --> 02:44:17,433 SOME OF THE THINGS WE'RE DOING 3838 02:44:17,433 --> 02:44:22,204 IN THE LUNG AREA OF THE 3839 02:44:22,204 --> 02:44:23,406 INSTITUTE THAT MAY BE RELEVANT 3840 02:44:23,406 --> 02:44:33,849 TO THE COMMISSION'S WORK. 3841 02:44:34,517 --> 02:44:35,418 IT'S ABOUT TO COME BACK AND TALK 3842 02:44:35,418 --> 02:44:45,761 ABOUT THE LUNG AREA. 3843 02:44:59,642 --> 02:45:01,644 THIS IS IN TERMS OF OUTPUT AND 3844 02:45:01,644 --> 02:45:05,514 PROGRESS. 3845 02:45:05,514 --> 02:45:07,283 I'M NOT GOING TO DWELL ON THIS 3846 02:45:07,283 --> 02:45:09,385 BUT I THOUGHT WE SHOULD ANCHOR 3847 02:45:09,385 --> 02:45:12,822 YOU ALL IN TERMS OF WHAT THIS IS 3848 02:45:12,822 --> 02:45:14,457 ALL ABOUT. 3849 02:45:14,457 --> 02:45:17,126 SO THIS IS ABOUT CHRONIC 3850 02:45:17,126 --> 02:45:18,094 OBSTRUCTIVE PULMONARY DISEASE. 3851 02:45:18,094 --> 02:45:19,762 PROBABLY MOST IN THE ROOM IF NOT 3852 02:45:19,762 --> 02:45:21,197 ALL RECOGNIZE THIS IS THE FOURTH 3853 02:45:21,197 --> 02:45:23,299 LEADING CAUSE OF DEATH IN THE 3854 02:45:23,299 --> 02:45:28,637 COUNTRY AND IT AFFECTS ABOUT 17 3855 02:45:28,637 --> 02:45:31,007 MILLION PEOPLE, 1 IN 5 AMERICANS 3856 02:45:31,007 --> 02:45:33,676 OVER 35 AND THE LEADING CAUSE OF 3857 02:45:33,676 --> 02:45:35,511 DEATH AND DISABILITY AND HIGH 3858 02:45:35,511 --> 02:45:44,053 MORTALITY RATE OF 150,000 3859 02:45:44,053 --> 02:45:46,188 AMERICANS EVERY YEAR AND SEE 3860 02:45:46,188 --> 02:45:48,391 THOSE DIAGNOSED WITH COPD AND SO 3861 02:45:48,391 --> 02:45:49,091 FORTH. 3862 02:45:49,091 --> 02:45:51,527 IT'S NOT COPD EXACTLY THAT I 3863 02:45:51,527 --> 02:45:53,062 THINK YOU WANT TO HEAR ABOUT SO 3864 02:45:53,062 --> 02:45:53,262 MUCH. 3865 02:45:53,262 --> 02:45:56,465 SO WE'RE GOING TO NOW PIVOT AWAY 3866 02:45:56,465 --> 02:45:59,435 FROM THE DISEASE ITSELF BUT TELL 3867 02:45:59,435 --> 02:46:00,836 YOU A LITTLE BIT ABOUT WHY WE 3868 02:46:00,836 --> 02:46:02,605 NEED AN ACTION PLAN. 3869 02:46:02,605 --> 02:46:04,607 IT MAY BECOME KIND OF OBVIOUS TO 3870 02:46:04,607 --> 02:46:06,409 YOU WHEN HAVE YOU A DISEASE OF 3871 02:46:06,409 --> 02:46:10,413 THIS MAGNITUDE AND SCOPE. 3872 02:46:10,413 --> 02:46:12,681 SO WHAT IS THE COPD NATIONAL 3873 02:46:12,681 --> 02:46:13,849 ACTION PLAN? 3874 02:46:13,849 --> 02:46:17,887 THIS IS THE FIRST EVER BLUEPRINT 3875 02:46:17,887 --> 02:46:20,990 THAT WAS DEVELOPED BY A WIDE 3876 02:46:20,990 --> 02:46:23,559 RANGE OF STAKEHOLDERS IN A 3877 02:46:23,559 --> 02:46:25,094 MULTI-FACETED WAY IT UNIFY THE 3878 02:46:25,094 --> 02:46:28,097 FIGHT AGAINST THIS DISEASE. 3879 02:46:28,097 --> 02:46:32,001 IN MANY WAYS THOUGH IT HAS A 3880 02:46:32,001 --> 02:46:36,205 VERY HIGH MORTALITY RATE AND 3881 02:46:36,205 --> 02:46:38,741 PREVALENCE, IT ALSO IS A BIT 3882 02:46:38,741 --> 02:46:39,742 FRAGMENTED IN TERMS OF HOW THE 3883 02:46:39,742 --> 02:46:42,011 COMMUNITY IS APPROACHING IT 3884 02:46:42,011 --> 02:46:47,016 WHETHER FROM A DISEASE OR 3885 02:46:47,016 --> 02:46:49,585 ADVOCACY OR IN TERMS OF GENERAL 3886 02:46:49,585 --> 02:46:54,223 EDUCATIONAL MATERIAL. 3887 02:46:54,223 --> 02:47:04,667 THIS PLAN WAS REALLY AND 3888 02:47:17,613 --> 02:47:18,747 COMPREHENSIVE FRAMEWORK FOR 3889 02:47:18,747 --> 02:47:20,416 ACTION ON THOSE AFFECTED BY THE 3890 02:47:20,416 --> 02:47:22,084 DISEASE AND THOSE WHO CARE FOR 3891 02:47:22,084 --> 02:47:23,319 THOSE AFFECTED BY THE DISEASE 3892 02:47:23,319 --> 02:47:25,287 AND AT THE SAME TIME TO TRY TO 3893 02:47:25,287 --> 02:47:29,592 AGAIN REDUCE THE BURDEN, BRING 3894 02:47:29,592 --> 02:47:30,693 ABOUT A BIT MORE COORDINATION 3895 02:47:30,693 --> 02:47:32,761 AND TRY TO HIT ALL THE DIFFERENT 3896 02:47:32,761 --> 02:47:35,264 SEGMENTS ONE WOULD NEED TO 3897 02:47:35,264 --> 02:47:37,066 ADDRESS IN TERMS OF REALLY 3898 02:47:37,066 --> 02:47:38,234 TAKING ON COPD IN A 3899 02:47:38,234 --> 02:47:45,374 COMPREHENSIVE WAY. 3900 02:47:45,374 --> 02:47:46,709 THIS IS WHAT THE ACTION PLAN IS 3901 02:47:46,709 --> 02:47:49,078 ALL ABOUT. 3902 02:47:49,078 --> 02:47:50,212 DEVELOPED THROUGH A 3903 02:47:50,212 --> 02:47:51,780 COLLABORATIVE PROCESS ACROSS THE 3904 02:47:51,780 --> 02:47:54,850 COPD COMMUNITY WORKING TOGETHER 3905 02:47:54,850 --> 02:48:03,459 TO PROVIDE PATIENT-CENTEREDNESS 3906 02:48:03,459 --> 02:48:06,462 AND LOOKS AT HEALTH CARE 3907 02:48:06,462 --> 02:48:08,264 DELIVERY AND PRACTICE AND 3908 02:48:08,264 --> 02:48:10,232 INFORMS POLICY AND ADVOCACY AND 3909 02:48:10,232 --> 02:48:14,837 BUILT AROUND FIVE GOALS AND 36 3910 02:48:14,837 --> 02:48:15,237 OBJECTIVES. 3911 02:48:15,237 --> 02:48:17,673 NOW, I'M NOT GOING TO GO THROUGH 3912 02:48:17,673 --> 02:48:18,841 EVERY SINGLE ONE BUT SKIM OVER 3913 02:48:18,841 --> 02:48:21,110 THE TOP AND LET YOU SEE A 3914 02:48:21,110 --> 02:48:22,878 GLIMPSE OF WHAT IS IN THIS 3915 02:48:22,878 --> 02:48:23,245 ACTION PLAN. 3916 02:48:23,245 --> 02:48:24,413 IT IS ONLINE. 3917 02:48:24,413 --> 02:48:26,215 IT'S ALSO AVAILABLE PROBABLY IN 3918 02:48:26,215 --> 02:48:29,051 HARD COPY IF YOU WANT TO SEE ALL 3919 02:48:29,051 --> 02:48:31,020 OF THE ELEMENTS OF IT. 3920 02:48:31,020 --> 02:48:33,088 IT'S VERY WELL DONE AND 3921 02:48:33,088 --> 02:48:34,723 COMPREHENSIVE AND IT'S AN EASY 3922 02:48:34,723 --> 02:48:35,991 READ FRANKLY. 3923 02:48:35,991 --> 02:48:37,993 THOUGH IT MAY BE A LITTLE BIT 3924 02:48:37,993 --> 02:48:39,895 INTIMIDATING WHEN YOU SEE THE 3925 02:48:39,895 --> 02:48:41,964 SIZE IT'S PRETTY QUICK TO GO 3926 02:48:41,964 --> 02:48:43,065 THROUGH AND GET A SENSE WHERE 3927 02:48:43,065 --> 02:48:46,835 THE GAPS AND NEEDS ARE. 3928 02:48:46,835 --> 02:48:52,107 SO THIS ALL STARTED THEN IN 3929 02:48:52,107 --> 02:48:55,711 FEBRUARY OF 2016 WHILE WE GOT 3930 02:48:55,711 --> 02:48:57,746 THE DIRECTIVE FROM CONGRESS A 3931 02:48:57,746 --> 02:49:00,916 BIT BEFORE THAT BUT BEGAN TO PUT 3932 02:49:00,916 --> 02:49:03,886 OUR HEADS TOGETHER IN CREATING 3933 02:49:03,886 --> 02:49:05,421 THE NATIONAL ACTION PLAN. 3934 02:49:05,421 --> 02:49:08,557 SO ONE OF THE THINGS WE SAID WE 3935 02:49:08,557 --> 02:49:11,227 WOULD DO IS TO SET THE 3936 02:49:11,227 --> 02:49:12,394 FOUNDATION FOR THE PLAN AND THE 3937 02:49:12,394 --> 02:49:14,196 WAY WE WENT ABOUT THAT WAS WE 3938 02:49:14,196 --> 02:49:16,699 CREATED WHAT WE CALL THE TOWN 3939 02:49:16,699 --> 02:49:17,066 HALL MEETING. 3940 02:49:17,066 --> 02:49:19,001 THIS BROUGHT TOGETHER IN FACT IN 3941 02:49:19,001 --> 02:49:21,704 A ROOM BECAUSE THIS IS 3942 02:49:21,704 --> 02:49:24,707 PREPANDEMIC MORE THAN ABOUT 200 3943 02:49:24,707 --> 02:49:27,076 INDIVIDUALS ATTENDEES, PATIENTS, 3944 02:49:27,076 --> 02:49:28,644 CAREGIVERS, THE WHOLE RANGE, 3945 02:49:28,644 --> 02:49:31,814 INDUSTRY LEADERS, ACADEMIC 3946 02:49:31,814 --> 02:49:33,816 LEADERS, 14 FEDERAL PARTNERS ALL 3947 02:49:33,816 --> 02:49:35,117 PARTICIPATED. 3948 02:49:35,117 --> 02:49:38,187 THIS WAS A PRIVATE SECTOR AND 3949 02:49:38,187 --> 02:49:38,821 GOVERNMENT LED EFFORT. 3950 02:49:38,821 --> 02:49:41,357 IT WAS A HEAVY LIFT. 3951 02:49:41,357 --> 02:49:44,326 IT WAS A HUGE UNDERTAKING. 3952 02:49:44,326 --> 02:49:49,098 A BIG SHOUT OUT TO NEYAL AND 3953 02:49:49,098 --> 02:49:52,167 OTHER INSTITUTE OFFICE OF POLICY 3954 02:49:52,167 --> 02:49:54,236 AND STRATEGIC OPPORTUNITIES TO 3955 02:49:54,236 --> 02:49:56,605 REALLY SAY WE REALLY HAD TO 3956 02:49:56,605 --> 02:49:58,674 BRING TOGETHER ALL THE RESOURCES 3957 02:49:58,674 --> 02:50:01,243 WITHIN NHLBI TO PULL THIS OFF. 3958 02:50:01,243 --> 02:50:02,511 AND WHAT HAPPENED DURING THIS 3959 02:50:02,511 --> 02:50:04,613 TOWN HALL MEETING YOU SEE A 3960 02:50:04,613 --> 02:50:07,149 GLIMMER OF THE ATTENDEES, WE 3961 02:50:07,149 --> 02:50:09,051 BROKE INTO SIX BREAKOUT GROUPS 3962 02:50:09,051 --> 02:50:11,754 AND THEY WERE BASED AROUND THE 3963 02:50:11,754 --> 02:50:12,421 ORIGINAL ACTION PLAN GOALS. 3964 02:50:12,421 --> 02:50:16,592 AND THIS IS HOW WE CAME UP WITH 3965 02:50:16,592 --> 02:50:17,359 18 RECOMMENDATIONS FROM THESE 3966 02:50:17,359 --> 02:50:22,965 SIX DIFFERENT GROUPS. 3967 02:50:22,965 --> 02:50:24,033 I'M NOT GOING TO GO INTO ALL THE 3968 02:50:24,033 --> 02:50:26,869 DETAILS OF THIS BUT WANTED TO 3969 02:50:26,869 --> 02:50:30,205 LET YOU SEE THE TIME LINE THAT 3970 02:50:30,205 --> 02:50:31,974 WENT INTO THE DEVELOPMENT OF THE 3971 02:50:31,974 --> 02:50:33,175 PLAN. 3972 02:50:33,175 --> 02:50:37,046 AS I MENTIONED PRE 2016 WE GOT 3973 02:50:37,046 --> 02:50:38,580 THE CONGRESSIONAL DIRECTIVE. 3974 02:50:38,580 --> 02:50:46,221 IN '16 WE DEVELOPED THE FIRST 3975 02:50:46,221 --> 02:50:49,158 DRAFT OF THE PLAN WITH ALL THE 3976 02:50:49,158 --> 02:50:52,528 INPUT AND SOLICITED FEEDBACK 3977 02:50:52,528 --> 02:50:55,998 FROM THE COPD TOWN HALL 3978 02:50:55,998 --> 02:50:56,265 ATTENDEES. 3979 02:50:56,265 --> 02:50:59,501 THE PLAN WAS THEN REVISED LATE 3980 02:50:59,501 --> 02:51:05,841 IN 2016 AND REVIEWED AGAIN IN 3981 02:51:05,841 --> 02:51:09,211 LATE IN 2016 AND WENT THROUGH 3982 02:51:09,211 --> 02:51:10,212 FINAL REVIEW AND GOVERNMENT 3983 02:51:10,212 --> 02:51:15,818 CLEARANCE REQUIRED TO PUT OUT A 3984 02:51:15,818 --> 02:51:20,856 GOVERNMENT DOCUMENT IN APRIL 3985 02:51:20,856 --> 02:51:21,590 RELEASED IN MAY. 3986 02:51:21,590 --> 02:51:22,825 THEY TAKE TIME. 3987 02:51:22,825 --> 02:51:24,860 I DOESN'T HAPPEN OVERNIGHT. 3988 02:51:24,860 --> 02:51:26,195 IT'S A CLEAR TAKEAWAY. 3989 02:51:26,195 --> 02:51:26,829 YOU HAVE TO BE PATIENT AND LET 3990 02:51:26,829 --> 02:51:33,135 THE PROCESS PLAY OUT. 3991 02:51:33,135 --> 02:51:35,471 BUT YOU GET A SUPERB PRODUCT AT 3992 02:51:35,471 --> 02:51:40,342 THE END. 3993 02:51:40,342 --> 02:51:43,812 HERE ARE THE FIVE MAJOR GOALS TO 3994 02:51:43,812 --> 02:51:45,247 EMPOWER PEOPLE WITH COPD AND 3995 02:51:45,247 --> 02:51:46,081 FAMILY AND CAREGIVERS TO 3996 02:51:46,081 --> 02:51:47,816 RECOGNIZE AND REDUCE THE BURDEN. 3997 02:51:47,816 --> 02:51:51,754 THE SECOND WAS DO APPROVE 3998 02:51:51,754 --> 02:51:53,155 PREVENTION, TREATMENT AND 3999 02:51:53,155 --> 02:51:54,289 MANAGEMENT OF COPD AND ENHANCE 4000 02:51:54,289 --> 02:51:57,126 THE QUALITY OF CARE ACROSS THE 4001 02:51:57,126 --> 02:51:57,960 HEALTH SPECTRUM. 4002 02:51:57,960 --> 02:52:02,197 THIRD IS TO COLLECT, ANALYZE AND 4003 02:52:02,197 --> 02:52:04,733 REPORT AND DISSEMINATE PUBLIC 4004 02:52:04,733 --> 02:52:06,702 HEALTH RELATED DATA THAT WOULD 4005 02:52:06,702 --> 02:52:08,337 DRIVE CHANGE AND TRACK PROGRESS. 4006 02:52:08,337 --> 02:52:10,205 FOUR WOULD BE INCREASE AND 4007 02:52:10,205 --> 02:52:12,241 SUSTAIN THE RESEARCH TO BETTER 4008 02:52:12,241 --> 02:52:13,709 UNDERSTAND THE DISEASE, 4009 02:52:13,709 --> 02:52:17,246 PATHOGENESIS UP TO MANAGEMENT 4010 02:52:17,246 --> 02:52:19,148 AND THEN TRANSLATE NATIONAL 4011 02:52:19,148 --> 02:52:20,349 POLICY AND PROGRAM 4012 02:52:20,349 --> 02:52:22,217 RECOMMENDATIONS INTO RESEARCH 4013 02:52:22,217 --> 02:52:26,388 AND PUBLIC HEALTH ACTIONS. 4014 02:52:26,388 --> 02:52:27,923 WHAT I HOPE YOU CAN SEE IS IT 4015 02:52:27,923 --> 02:52:29,892 TOUCH EVERY SECTOR OF SOCIETY. 4016 02:52:29,892 --> 02:52:37,132 IT'S NOT JUST OF AN AT 4017 02:52:37,132 --> 02:52:37,800 RESEARCHERS. 4018 02:52:37,800 --> 02:52:39,468 NHLBI HAS A ROLE BUT IT'S 4019 02:52:39,468 --> 02:52:42,538 PRIMARILY IN GOAL FOUR IN SOME 4020 02:52:42,538 --> 02:52:44,840 OF FIVE MAYBE WHEN YOU LOOK AT 4021 02:52:44,840 --> 02:52:49,978 THREE YOU SEE A LOT OF CDC IN 4022 02:52:49,978 --> 02:52:51,914 THERE YOU CAN SEE WHERE A 4023 02:52:51,914 --> 02:52:53,382 DIFFERENT GOVERNMENT AGENCY AND 4024 02:52:53,382 --> 02:52:55,184 STAKEHOLDER GROUP WHETHER A 4025 02:52:55,184 --> 02:52:56,251 FOUNDATION OR FAMILY RUN 4026 02:52:56,251 --> 02:52:59,221 ORGANIZATION OR ANY OTHER SECTOR 4027 02:52:59,221 --> 02:53:01,223 THAT TOUCHES INDIVIDUAL PATIENTS 4028 02:53:01,223 --> 02:53:01,824 WITH THE DISEASE CAN FIND 4029 02:53:01,824 --> 02:53:09,531 THEMSELVES IN THE PLAN. 4030 02:53:09,531 --> 02:53:10,666 AND WE STARTED IMPLEMENTATION OF 4031 02:53:10,666 --> 02:53:13,569 THE PLAN AND THAT DEPENDS ON THE 4032 02:53:13,569 --> 02:53:15,103 ENTIRE COPD COMMUNITY. 4033 02:53:15,103 --> 02:53:17,139 OVER AND OVER AGAIN IN ALL KINDS 4034 02:53:17,139 --> 02:53:18,907 OF PUBLIC MEETINGS HAVE 4035 02:53:18,907 --> 02:53:21,176 INDICATED THAT THIS IS NOT JUST 4036 02:53:21,176 --> 02:53:21,944 A PLAN FOR NHLBI. 4037 02:53:21,944 --> 02:53:24,713 THIS IS NOT A PLAN FOR NIH. 4038 02:53:24,713 --> 02:53:29,084 THIS IS NOT JUST ONE AGENCY OR 4039 02:53:29,084 --> 02:53:29,418 ORGANIZATION. 4040 02:53:29,418 --> 02:53:30,219 IT'S THE ENTIRE STAKEHOLDER 4041 02:53:30,219 --> 02:53:32,888 COMMUNITY THAT NEED TO DRIVE THE 4042 02:53:32,888 --> 02:53:34,189 CHANGE AND SUPPORT THE PROGRAMS 4043 02:53:34,189 --> 02:53:35,824 AND ACTIVITIES TO HELP REDUCE 4044 02:53:35,824 --> 02:53:36,925 THE BURDEN OF THE DISEASE. 4045 02:53:36,925 --> 02:53:39,995 WE USE THE METAPHOR RELATED TO 4046 02:53:39,995 --> 02:53:41,697 MOVE THE NEEDLE. 4047 02:53:41,697 --> 02:53:43,765 WE SAID THAT EARLY ON. 4048 02:53:43,765 --> 02:53:46,568 I'VE USED THE ANALOGY IF YOU 4049 02:53:46,568 --> 02:53:49,338 LOOK AT THE GAS TANK IN YOUR CAR 4050 02:53:49,338 --> 02:53:52,341 WHERE ARE WE WHEN WE LOOK AT THE 4051 02:53:52,341 --> 02:53:52,574 NEEDLE. 4052 02:53:52,574 --> 02:53:53,942 MAYBE WE'RE A QUARTER FULL BUT 4053 02:53:53,942 --> 02:53:55,744 WANT TO GET THE TANK TOPPED OFF 4054 02:53:55,744 --> 02:54:02,684 AND SEE OUR NED -- NEEDLE GET 4055 02:54:02,684 --> 02:54:06,989 TO FULL AND A PUZZLE LOOKING 4056 02:54:06,989 --> 02:54:08,357 FORMAT WHERE IT INVOLVED 4057 02:54:08,357 --> 02:54:09,224 DIFFERENT ORGANIZATIONS AND THEY 4058 02:54:09,224 --> 02:54:10,993 ALL COME TOGETHER AND ALL 4059 02:54:10,993 --> 02:54:12,494 CONTRIBUTE IN SOME WAY TO MAKING 4060 02:54:12,494 --> 02:54:22,371 TO ACHIEVE THOSE GOALS. 4061 02:54:22,371 --> 02:54:25,407 AND WHAT WE TRY TOE DO IS 4062 02:54:25,407 --> 02:54:29,311 OUTLINE THE FIVE GOALS AND PUT 4063 02:54:29,311 --> 02:54:33,515 THEIR SCHEMATIC OF WHERE THE 4064 02:54:33,515 --> 02:54:34,216 DIFFERENT ORGANIZATIONS PLUG 4065 02:54:34,216 --> 02:54:37,653 INTO DIFFERENT GOALS SO YOU CAN 4066 02:54:37,653 --> 02:54:42,925 SEE WHERE YOU ARE ON THE BIGGER 4067 02:54:42,925 --> 02:54:44,092 EFFORT. 4068 02:54:44,092 --> 02:54:45,594 HOPEFULLY PEOPLE CAN USE THIS IN 4069 02:54:45,594 --> 02:54:49,364 THEIR OWN ORGANIZATION WHETHER 4070 02:54:49,364 --> 02:54:50,198 RESEARCHER OR HEALTH 4071 02:54:50,198 --> 02:54:53,502 PROFESSIONAL OR POLICY MAKER OR 4072 02:54:53,502 --> 02:54:54,603 ANOTHER CONCERNED INDIVIDUAL. 4073 02:54:54,603 --> 02:54:59,241 AND THERE IS A PLACE WHERE EACH 4074 02:54:59,241 --> 02:55:01,043 INDIVIDUAL PERSON, ORGANIZATION 4075 02:55:01,043 --> 02:55:04,112 OR ENTITY CAN PLUG IN AND TAKE 4076 02:55:04,112 --> 02:55:05,514 AN ACTIVE ROLE IN IMPLEMENTING 4077 02:55:05,514 --> 02:55:12,154 THE PLAN. 4078 02:55:12,154 --> 02:55:14,656 I'LL TURN IT OVER TO NEYAL TO 4079 02:55:14,656 --> 02:55:15,424 FINISH UP HERE. 4080 02:55:15,424 --> 02:55:17,492 NOT ONLY DID WE HAVE TO DEVELOP 4081 02:55:17,492 --> 02:55:22,431 THE PLAN AND COME UP WITH A WAY 4082 02:55:22,431 --> 02:55:25,534 TO REPORT AND DEVELOP A TRACKING 4083 02:55:25,534 --> 02:55:25,801 PROCESS. 4084 02:55:25,801 --> 02:55:27,669 THIS MAY BE A WAY TO LOOK AT 4085 02:55:27,669 --> 02:55:29,204 THIS IN TERMS OF HOLDING 4086 02:55:29,204 --> 02:55:33,475 EVERYONE ACCOUNTABLE. 4087 02:55:33,475 --> 02:55:34,876 IF EVERYONE FEELS THEY HAVE A 4088 02:55:34,876 --> 02:55:36,178 ROLE IN THE DEVELOPMENT OF THE 4089 02:55:36,178 --> 02:55:36,878 PLAN AND RECOMMENDATION THEY 4090 02:55:36,878 --> 02:55:39,615 ALSO SHOULD HAVE A ROLE IN 4091 02:55:39,615 --> 02:55:42,384 IMPLEMENTING IT BUT THEN WE NEED 4092 02:55:42,384 --> 02:55:43,652 A REPORT CARD. 4093 02:55:43,652 --> 02:55:45,854 SOME WAY TO SAY WHAT DID YOU DO 4094 02:55:45,854 --> 02:55:49,391 TO HELP MOVE THE NEEDLE. 4095 02:55:49,391 --> 02:55:50,025 THIS IS THE PART OF THE 4096 02:55:50,025 --> 02:55:58,767 PRESENTATION WE'RE IN NOW. 4097 02:55:58,767 --> 02:56:05,507 WE'RE NOW RECOMMENDATION 4098 02:56:05,507 --> 02:56:09,945 RECOMMENDING THE PLAN. 4099 02:56:09,945 --> 02:56:12,280 WE WANTED TO FIND A WAY TO TRACK 4100 02:56:12,280 --> 02:56:16,018 THIS BUT IT'S ALSO PART OF THE 4101 02:56:16,018 --> 02:56:18,020 GOAL AND ONE OBJECTIVE IS TO 4102 02:56:18,020 --> 02:56:23,291 TRACK THROUGH REPORTING. 4103 02:56:23,291 --> 02:56:24,926 AROUND WE WERE THINKING ABOUT 4104 02:56:24,926 --> 02:56:27,996 HOW DO WE DO THIS OR MONITOR 4105 02:56:27,996 --> 02:56:28,964 THIS? 4106 02:56:28,964 --> 02:56:30,999 WE HAD A LOT OF DISCUSSIONS 4107 02:56:30,999 --> 02:56:32,300 INTERNALLY AND WITH OUR COPD 4108 02:56:32,300 --> 02:56:34,636 STAKEHOLDER COMMUNITY TO TALK 4109 02:56:34,636 --> 02:56:36,371 ABOUT THIS AND EXPLORED SOFTWARE 4110 02:56:36,371 --> 02:56:44,680 THAT WAS CUSTOMIZEDAB ABAB ABAB 4111 02:56:44,680 --> 02:56:45,881 CUSTOMIZABLE THAT'S OPEN TO THE 4112 02:56:45,881 --> 02:56:46,848 COPD COMMUNITY THEY CAN COME TO 4113 02:56:46,848 --> 02:56:49,618 AND ADD THEIR PROJECTS AND 4114 02:56:49,618 --> 02:56:52,387 RESOURCES AND EVEN WITH THIS 4115 02:56:52,387 --> 02:56:53,655 CONTINUE TO BE ESSENTIAL. 4116 02:56:53,655 --> 02:56:54,923 WE PUT TOGETHER A FIRST DRAFT OF 4117 02:56:54,923 --> 02:56:57,893 WHAT ARE THE THINGS WE WANT TO 4118 02:56:57,893 --> 02:56:59,494 TRACK AND WORK WITH THE 4119 02:56:59,494 --> 02:57:01,296 COMMUNITY TO TRACK ALL THE 4120 02:57:01,296 --> 02:57:02,230 FIELDS AND WHAT ARE THINGS WE 4121 02:57:02,230 --> 02:57:05,000 WANT TO KNOW ABOUT THE GOALS AND 4122 02:57:05,000 --> 02:57:06,935 OBJECTIVES AND SOMETHING EASY 4123 02:57:06,935 --> 02:57:07,969 AND SIMPLE AND TAKES FIVE 4124 02:57:07,969 --> 02:57:09,237 MINUTES FOR AN ORGANIZATION TO 4125 02:57:09,237 --> 02:57:10,739 INPUT INFORMATION. 4126 02:57:10,739 --> 02:57:13,608 WE DEVELOPED THIS COMMUNITY 4127 02:57:13,608 --> 02:57:16,244 ACTION TOOL TO HELP WITH 4128 02:57:16,244 --> 02:57:17,646 ACTIVITIES AND WHICH GOALS AND 4129 02:57:17,646 --> 02:57:22,217 OBJECTIVES ARE GETTING ACTIVITY 4130 02:57:22,217 --> 02:57:25,687 AND AN OPPORTUNITY FOR THE COPD 4131 02:57:25,687 --> 02:57:26,354 COMMUNITY TO COLLABORATE AND IF 4132 02:57:26,354 --> 02:57:32,861 THERE'S THOUGHT OF A PROGRAM FOR 4133 02:57:32,861 --> 02:57:37,866 RURAL PROVIDERS THEY CAN CONNECT 4134 02:57:37,866 --> 02:57:42,204 WITH FOLKS TO LEARN FROM EACH 4135 02:57:42,204 --> 02:57:43,705 OTHER AND ISSUE PERIODIC REPORT 4136 02:57:43,705 --> 02:57:46,041 CARDS AND WHERE WE'RE MAKING 4137 02:57:46,041 --> 02:57:47,375 PROGRESS AND WHERE WE NEED TO 4138 02:57:47,375 --> 02:57:54,316 SEE THE NEEDLE MOVE. 4139 02:57:54,316 --> 02:57:56,051 AND ONE OF THE THINGS WE KNOW 4140 02:57:56,051 --> 02:57:58,820 ABOUT IS IT CAN ONLY BE AS 4141 02:57:58,820 --> 02:58:03,425 SUCCESSFUL AS WE MAKE IT AND THE 4142 02:58:03,425 --> 02:58:05,127 DATA'S ONLY AS GOOD AS THE DATA 4143 02:58:05,127 --> 02:58:05,560 IN IT. 4144 02:58:05,560 --> 02:58:07,062 THERE'S MOMENTUM AND EXCITEMENT 4145 02:58:07,062 --> 02:58:09,064 WHEN WE BROUGHT THE COMMUNITY 4146 02:58:09,064 --> 02:58:09,464 TOGETHER. 4147 02:58:09,464 --> 02:58:16,371 WE SAID IF WE BUILD IT WILL YOU 4148 02:58:16,371 --> 02:58:17,506 COME AND THEY SAID YES AND TALK 4149 02:58:17,506 --> 02:58:19,574 ABOUT POLICIES THAT NEED TO BE 4150 02:58:19,574 --> 02:58:19,841 MADE. 4151 02:58:19,841 --> 02:58:22,077 THERE'S MOMENTUM BEHIND IT. 4152 02:58:22,077 --> 02:58:25,680 WE HAVE ABOUT 105 ENTRIES 4153 02:58:25,680 --> 02:58:33,321 RIGHT NOW AND THE TYPES OF 4154 02:58:33,321 --> 02:58:35,157 ACTIVITIES LOOKING AT THE 4155 02:58:35,157 --> 02:58:36,558 ACTIVITY WHETHER HEALTH 4156 02:58:36,558 --> 02:58:38,026 PROFESSIONAL OR ACADEMIC 4157 02:58:38,026 --> 02:58:39,861 ORGANIZATION FOR FEDERAL OR 4158 02:58:39,861 --> 02:58:40,629 STATE AGENCIES. 4159 02:58:40,629 --> 02:58:42,397 IS IT FOR CAREGIVERS? 4160 02:58:42,397 --> 02:58:44,432 POLICY MAKERS? 4161 02:58:44,432 --> 02:58:46,968 JUST THE PUBLIC OR HEALTH CARE 4162 02:58:46,968 --> 02:58:48,537 PROVIDERS, AT RISK POPULATIONS? 4163 02:58:48,537 --> 02:58:51,873 THE ACTIVITIES ARE TAKING PLACE 4164 02:58:51,873 --> 02:58:54,075 AND IS IT A WORKPLACE THING FOR 4165 02:58:54,075 --> 02:58:56,878 CLINICAL SETTING TYPES OF 4166 02:58:56,878 --> 02:58:57,179 ACTIVITIES? 4167 02:58:57,179 --> 02:59:01,650 IS IT ADVOCACY OR TRAINING OR 4168 02:59:01,650 --> 02:59:02,784 CME FOR HEALTH CARE PROVIDERS 4169 02:59:02,784 --> 02:59:05,053 AND BREAK IT DOWN FURTHER INTO 4170 02:59:05,053 --> 02:59:06,822 THE SPECIFIC POPULATIONS BEING 4171 02:59:06,822 --> 02:59:07,589 REACHED. 4172 02:59:07,589 --> 02:59:09,024 ALSO GEOGRAPHIC IN TERMS OF 4173 02:59:09,024 --> 02:59:10,759 NATIONAL IN SCOPE OR WHAT YOU'RE 4174 02:59:10,759 --> 02:59:13,228 DOING REGIONAL OR LOCALIZED AND 4175 02:59:13,228 --> 02:59:16,598 LIKE THE REACH UP TERMS OF HOW 4176 02:59:16,598 --> 02:59:18,233 INFORMATION IS GETTING OUT AND 4177 02:59:18,233 --> 02:59:19,868 TO WHERE. 4178 02:59:19,868 --> 02:59:21,036 WE'LL BE HOLDING A MEETING IN A 4179 02:59:21,036 --> 02:59:24,539 FEW WEEKS IN NOVEMBER TO BRING A 4180 02:59:24,539 --> 02:59:26,908 COPD STAKEHOLDER COMMUNITY BACK 4181 02:59:26,908 --> 02:59:28,810 TOGETHER TO REENERGIZE THEM AND 4182 02:59:28,810 --> 02:59:29,945 REMIND THEM THIS BELONGS TO 4183 02:59:29,945 --> 02:59:30,779 EVERYBODY IN THE COMMUNITY AND 4184 02:59:30,779 --> 02:59:32,047 THIS IS LIKE THE ONE SYSTEM THAT 4185 02:59:32,047 --> 02:59:36,852 WE HAVE FOR BEING ABLE TO TRACK 4186 02:59:36,852 --> 02:59:38,887 AND REPORT AND COME TO THE 4187 02:59:38,887 --> 02:59:41,356 WEBSITE AND THE GRAPHS ARE 4188 02:59:41,356 --> 02:59:42,190 DOWNLOADABLE TO PEOPLE CAN PULL 4189 02:59:42,190 --> 02:59:44,893 THEM INTO PRESENTATIONS AS THEY 4190 02:59:44,893 --> 02:59:45,660 ADVOCATE FOR IMPLEMENTATION OF 4191 02:59:45,660 --> 02:59:51,299 THE PLAN. 4192 02:59:51,299 --> 02:59:54,603 WE HAVE HARD COPIES OF THE PLAN 4193 02:59:54,603 --> 02:59:56,238 AND YOU'RE WELCOME TO LOG ON AND 4194 02:59:56,238 --> 02:59:58,907 YOU CAN SEE THE TYPES OF DATA 4195 02:59:58,907 --> 02:59:59,708 BEING COLLECTED IN THE COMMUNITY 4196 02:59:59,708 --> 03:00:00,742 ACTION TOOL. 4197 03:00:00,742 --> 03:00:01,643 THAT'S IT. 4198 03:00:01,643 --> 03:00:02,811 IF YOU HAVE QUESTIONS, HAPPY TO 4199 03:00:02,811 --> 03:00:12,454 ANSWER. 4200 03:00:12,454 --> 03:00:16,191 >> WE'LL NOW ENTER THE QUESTION 4201 03:00:16,191 --> 03:00:18,727 AND ANSWER PHASE AND TURN IT TO 4202 03:00:18,727 --> 03:00:18,927 SELEN. 4203 03:00:18,927 --> 03:00:20,729 >> THANKS TO OUR PANELISTS. 4204 03:00:20,729 --> 03:00:26,534 I WANT TO ACKNOWLEDGE IT'S VERY 4205 03:00:26,534 --> 03:00:28,436 DIFFICULT TO BOIL DOWN 4206 03:00:28,436 --> 03:00:29,404 EVERYTHING YOU'RE HOPING TO DO 4207 03:00:29,404 --> 03:00:36,745 INTO A SET OF SLIDES BUT IN 4208 03:00:36,745 --> 03:00:37,412 WATCHING COMMISSIONERS I CAN 4209 03:00:37,412 --> 03:00:40,949 TELL YOU SPARKED QUESTIONS. 4210 03:00:41,249 --> 03:00:42,183 MENTIONED EARLIER TODAY WE'RE 4211 03:00:42,183 --> 03:00:44,319 WORKING UNDER SIX COMMITTEES. 4212 03:00:44,319 --> 03:00:45,253 EACH COMMITTEE BROUGHT QUESTIONS 4213 03:00:45,253 --> 03:00:45,687 FOR YOU. 4214 03:00:45,687 --> 03:00:50,458 SOME HAVE CHANGED IN THE PROCESS 4215 03:00:50,458 --> 03:00:51,192 OF PRESENTATIONS. 4216 03:00:51,192 --> 03:00:54,095 A FEW OF OUR COMMITTEES WERE NOT 4217 03:00:54,095 --> 03:00:55,964 ABLE TO ASK QUESTIONS THIS 4218 03:00:55,964 --> 03:00:57,065 MORNING AND SO I'LL START WITH 4219 03:00:57,065 --> 03:01:00,302 THEM THIS AFTERNOON. 4220 03:01:00,302 --> 03:01:02,570 DO YOU HAVE A QUESTION? 4221 03:01:02,570 --> 03:01:08,243 >> I'M A CO-LEAD OF THE 4222 03:01:08,243 --> 03:01:10,211 COMMUNITY GROWTH COMMITTEE AND 4223 03:01:10,211 --> 03:01:12,347 MANY PARTNERS WITH MULTIPLE 4224 03:01:12,347 --> 03:01:16,051 COMPETING PRIVATE ENTITIES, CAN 4225 03:01:16,051 --> 03:01:17,285 YOU SPEAK TO HOW YOU MADE YOUR 4226 03:01:17,285 --> 03:01:20,055 WAY THROUGH THAT AND HOW YOU 4227 03:01:20,055 --> 03:01:22,324 PROTECT PROPRIETARY INFO AND 4228 03:01:22,324 --> 03:01:23,525 INCENTIVIZING THAT 4229 03:01:23,525 --> 03:01:33,768 COLLABORATION? 4230 03:01:35,337 --> 03:01:40,008 >> WE TRY TO FOCUS ON THE 4231 03:01:40,008 --> 03:01:41,276 PARTNERSHIPS. 4232 03:01:41,276 --> 03:01:46,214 THAT LINE CAN BECOME BLURRY 4233 03:01:46,214 --> 03:01:48,750 THESE DAYS AROUND THE USE OF 4234 03:01:48,750 --> 03:01:53,088 A.I. TECHNOLOGY AND OTHER 4235 03:01:53,088 --> 03:01:53,388 APPROACHES. 4236 03:01:53,388 --> 03:01:56,958 I WILL SAY WE DON'T PUT IN. 4237 03:01:56,958 --> 03:02:00,261 WE HAVE WE ARE CLEAR AT THE 4238 03:02:00,261 --> 03:02:03,164 BEGINNING OF OUR PROGRAMS THAT 4239 03:02:03,164 --> 03:02:05,533 COMPANIES ARE NOT TOO SHARE 4240 03:02:05,533 --> 03:02:06,201 PROPRIETARY INFORMATION WITHIN 4241 03:02:06,201 --> 03:02:06,735 OUR COMMITTEES. 4242 03:02:06,735 --> 03:02:14,209 WE DON'T WANT IT TO BE SHARED. 4243 03:02:14,209 --> 03:02:19,614 WE DO NOT PUT IN THE TYPES OF 4244 03:02:19,614 --> 03:02:21,983 NON-DISCLOSURE AGREEMENTS THAT 4245 03:02:21,983 --> 03:02:23,485 WOULD PUT PENALTIES UPON EITHER 4246 03:02:23,485 --> 03:02:24,519 THE FOUNDATION OR ANY OF OUR 4247 03:02:24,519 --> 03:02:27,422 PARTNERS. 4248 03:02:27,422 --> 03:02:29,524 THAT'S FOR UTILIZING THE 4249 03:02:29,524 --> 03:02:31,026 TECHNOLOGY. 4250 03:02:31,026 --> 03:02:32,694 THERE ARE OBVIOUSLY SOME 4251 03:02:32,694 --> 03:02:34,195 EXCEPTIONS THAT I WILL GIVE YOU 4252 03:02:34,195 --> 03:02:36,564 SOME EXAMPLES OF THE 4253 03:02:36,564 --> 03:02:38,199 COMPLEXITIES OF THIS. 4254 03:02:38,199 --> 03:02:40,201 SO THE BESPOKE GENE THERAPY 4255 03:02:40,201 --> 03:02:43,471 CONSORTIUM I TALKED ABOUT 4256 03:02:43,471 --> 03:02:46,207 EARLIER, OBVIOUSLY THOSE ARE 4257 03:02:46,207 --> 03:02:48,777 RARE DISEASE PROGRAMS WHERE THE 4258 03:02:48,777 --> 03:02:50,345 ABILITY TO COMMERCIALIZE GENE 4259 03:02:50,345 --> 03:02:52,947 THERAPIES FOR THOSE DRUGS IS NOT 4260 03:02:52,947 --> 03:02:56,384 VIABLE WITHOUT THIS TYPE OF 4261 03:02:56,384 --> 03:02:57,085 REGULATORY PATHWAY. 4262 03:02:57,085 --> 03:03:00,288 SO CERTAINLY AGAIN THERE'S AN 4263 03:03:00,288 --> 03:03:01,923 UNDERSTANDING THAT COMPANIES ARE 4264 03:03:01,923 --> 03:03:04,426 PARTICIPATING IN GENERATING THIS 4265 03:03:04,426 --> 03:03:08,263 KIND OF SHARED PATHWAY AND THAT 4266 03:03:08,263 --> 03:03:10,198 THERE COULD BE OBVIOUSLY 4267 03:03:10,198 --> 03:03:12,333 INTELLECTUAL PROPERTY THAT THEY 4268 03:03:12,333 --> 03:03:12,967 USE THAT INFORMATION TO GENERATE 4269 03:03:12,967 --> 03:03:16,271 INTERNALLY. 4270 03:03:16,271 --> 03:03:17,806 EQUIVALENTLY THOUGH WE HAVE A 4271 03:03:17,806 --> 03:03:19,174 DESIGN PROJECT THAT'S FOR 4272 03:03:19,174 --> 03:03:20,075 CELL-BASED THERAPIES. 4273 03:03:20,075 --> 03:03:24,879 THAT ONE IS PLORE -- MORE 4274 03:03:24,879 --> 03:03:26,214 COMPLICATE AND THIS IS A 4275 03:03:26,214 --> 03:03:27,248 QUESTION WE RUN INTO. 4276 03:03:27,248 --> 03:03:30,018 FOR SOME OF THESE BROADER USE 4277 03:03:30,018 --> 03:03:32,120 APPLICATIONS THAT DO HAVE 4278 03:03:32,120 --> 03:03:34,022 VIABILITY, HOW DO WE HANDLE 4279 03:03:34,022 --> 03:03:34,456 THAT? 4280 03:03:34,456 --> 03:03:35,523 WE HAVEN'T COMPLETELY FIGURED 4281 03:03:35,523 --> 03:03:37,392 THAT OUT YET. 4282 03:03:37,392 --> 03:03:38,159 WE'RE MOVING INTO A LITTLE BIT 4283 03:03:38,159 --> 03:03:41,096 OF A NEW WORLD HERE. 4284 03:03:41,096 --> 03:03:43,331 AND IN SOME CASES WHEN YOU'RE 4285 03:03:43,331 --> 03:03:44,265 TALKING ABOUT TRANSLATIONAL 4286 03:03:44,265 --> 03:03:47,902 SPACE, THE GOAL IS FOR PEOPLE TO 4287 03:03:47,902 --> 03:03:49,270 TAKE THESE THINGS AND DEVELOP 4288 03:03:49,270 --> 03:03:49,704 THEM FURTHER. 4289 03:03:49,704 --> 03:03:53,775 WE WANT PEOPLE TO BE 4290 03:03:53,775 --> 03:03:57,545 INCENTIVIZED TO DEVELOP DRUGS 4291 03:03:57,545 --> 03:03:58,046 AND TREATMENTS. 4292 03:03:58,046 --> 03:04:01,616 WE ARE IN THE PROCESS OF 4293 03:04:01,616 --> 03:04:04,152 NAVIGATING FOR THAT PROJECT. 4294 03:04:04,152 --> 03:04:04,786 BUT GENERALLY WE TRY TO STAY IN 4295 03:04:04,786 --> 03:04:13,561 THAT SPACE. 4296 03:04:13,561 --> 03:04:14,996 >> WOULD ANYONE ELSE LIKE TO 4297 03:04:14,996 --> 03:04:16,231 ANSWER THAT QUESTION OR SHOULD 4298 03:04:16,231 --> 03:04:16,798 WE MOVE ON? 4299 03:04:16,798 --> 03:04:17,298 ALL RIGHT. 4300 03:04:17,298 --> 03:04:19,601 CAN YOU HEAR FROM THE SCIENTIFIC 4301 03:04:19,601 --> 03:04:20,101 ADVANCEMENT COMMITTEE. 4302 03:04:20,101 --> 03:04:20,702 YOU ALL HAVE A NUMBER OF 4303 03:04:20,702 --> 03:04:29,944 QUESTIONS. 4304 03:04:29,944 --> 03:04:34,115 >> FOR THE NIDDK AND COPD ARM 4305 03:04:34,115 --> 03:04:38,186 BECAUSE WE DISCUSSED ONE OF THE 4306 03:04:38,186 --> 03:04:40,388 ISSUES WE ARE FACING AS A 4307 03:04:40,388 --> 03:04:42,190 COMMUNITY IS A, HOW TO INCREASE 4308 03:04:42,190 --> 03:04:48,296 THE NUMBER OF INVESTIGATORS 4309 03:04:48,296 --> 03:04:58,840 WORKING IN THE FIELD AND IN THE 4310 03:04:58,840 --> 03:04:59,140 CENTER. 4311 03:04:59,140 --> 03:05:00,475 THOUGH THERE WERE UPS AND DOWNS 4312 03:05:00,475 --> 03:05:07,215 FROM THAT EXPERIENCE. 4313 03:05:07,215 --> 03:05:12,587 AND THERE'S ONE APPROACH TO 4314 03:05:12,587 --> 03:05:14,355 FOLLOW AND TO HAVE THE 4315 03:05:14,355 --> 03:05:17,058 OPPORTUNITY TO HAVE CENTERS THAT 4316 03:05:17,058 --> 03:05:19,594 HAVE DIFFERENT ASPECTS OF THE 4317 03:05:19,594 --> 03:05:22,197 RESEARCH COULD BE A POSSIBILITY 4318 03:05:22,197 --> 03:05:25,066 TO ADDRESS THOSE ISSUES AND 4319 03:05:25,066 --> 03:05:34,209 AGAIN PROVIDE GRANTS, ETCETERA. 4320 03:05:34,209 --> 03:05:37,245 YOU INDICATED THIS WAS SET IN 4321 03:05:37,245 --> 03:05:39,747 DATA BUT HOW IS THE INITIAL STEP 4322 03:05:39,747 --> 03:05:44,352 CREATED FOR THE CENTERS HOW DID 4323 03:05:44,352 --> 03:05:44,652 IT HAPPEN? 4324 03:05:44,652 --> 03:05:47,589 THAT CAN BE USEFUL FOR US AS ONE 4325 03:05:47,589 --> 03:05:50,225 OF THE MECHANISMS HOW TO MOVE 4326 03:05:50,225 --> 03:05:52,994 FORWARD WITH THAT. 4327 03:05:52,994 --> 03:05:59,567 >> I'M TRYING TO PROVIDE ANSWERS 4328 03:05:59,567 --> 03:06:04,005 BUT YOU CAN PROVIDE MORE AND 4329 03:06:04,005 --> 03:06:09,143 INITIALLY AS I DISCUSSED IN MY 4330 03:06:09,143 --> 03:06:13,815 SLIDE THESE ARE CONGRESSIONALLY 4331 03:06:13,815 --> 03:06:18,920 MANDATED THROUGH THE FUNDING 4332 03:06:18,920 --> 03:06:24,025 MECHANI 4333 03:06:24,025 --> 03:06:26,628 MECHANISMS THERE WERE DIFFERENT 4334 03:06:26,628 --> 03:06:27,996 CENTERS AND THESE ARE INDIVIDUAL 4335 03:06:27,996 --> 03:06:30,031 CENTERS CONDUCTING INDIVIDUAL 4336 03:06:30,031 --> 03:06:35,203 RESEARCH ON THOSE PARTICULAR 4337 03:06:35,203 --> 03:06:42,176 DISEASE AREAS AND THERE ARE WITH 4338 03:06:42,176 --> 03:06:52,720 VIROLOGY CENTERS BUT THESE HAD 4339 03:06:52,720 --> 03:07:03,231 INDEPENDENCE AND THROUGH THE 4340 03:07:05,633 --> 03:07:12,273 SMALL GRANTS AND AT THE TIME WE 4341 03:07:12,273 --> 03:07:15,410 REALIZED THERE WERE MORE NEEDS 4342 03:07:15,410 --> 03:07:18,479 AND THE GOALS OF THE PROGRAMS 4343 03:07:18,479 --> 03:07:23,951 WERE NOT BEING MET AND THERE WAS 4344 03:07:23,951 --> 03:07:34,429 A CONCERTED EFFORT AND NIH 4345 03:07:35,663 --> 03:07:41,836 BECAME A PARTICIPANT IN THE 4346 03:07:41,836 --> 03:07:45,640 CENTERS TO ENSURE THE GOALS OF 4347 03:07:45,640 --> 03:07:56,117 THE PROGRAMS ARE BEING MET. 4348 03:07:56,417 --> 03:08:06,894 >> BE CAREFUL WHAT YOU WISH FOR. 4349 03:08:09,130 --> 03:08:14,802 >> THERE IS A MANDATE THAT THERE 4350 03:08:14,802 --> 03:08:18,573 BE KIDNEY RESEARCH CENTERS NAMED 4351 03:08:18,573 --> 03:08:21,442 AFTER GEORGE O'BRIEN AND POLY 4352 03:08:21,442 --> 03:08:22,310 CYSTIC KIDNEY DISEASE CENTERS. 4353 03:08:22,310 --> 03:08:23,611 THEY'RE MANDATED. 4354 03:08:23,611 --> 03:08:26,347 THEY'RE NOT FUNDED. 4355 03:08:26,347 --> 03:08:33,688 SO NIDDK FUNDS THEM. 4356 03:08:33,688 --> 03:08:35,590 THEY WERE PRODUCT YOU HAVE BUT 4357 03:08:35,590 --> 03:08:37,225 WE WERE CONCERNED MAYBE THEY 4358 03:08:37,225 --> 03:08:41,295 WERE TOO ISOLATED. 4359 03:08:41,295 --> 03:08:43,231 DEEPAK MENTIONED THE TRANSITION 4360 03:08:43,231 --> 03:08:44,799 FROM DIFFERENT CENTERS TO 4361 03:08:44,799 --> 03:08:47,001 CONSORTIA IN THE HOPE THEY WOULD 4362 03:08:47,001 --> 03:08:48,269 BE MORE EFFECTIVE BOTH IN 4363 03:08:48,269 --> 03:08:52,306 SHARING OF RESOURCES AND ALSO 4364 03:08:52,306 --> 03:08:52,874 UNDERTAKING PROJECTS THEY 4365 03:08:52,874 --> 03:08:53,608 OTHERWISE MAY NOT HAVE DONE ON 4366 03:08:53,608 --> 03:09:02,817 THEIR OWN. 4367 03:09:02,817 --> 03:09:06,220 THERE'S AWARD CENTER. 4368 03:09:06,220 --> 03:09:10,057 HAPPY TO ANSWER ANY OTHER 4369 03:09:10,057 --> 03:09:10,324 QUESTIONS. 4370 03:09:10,324 --> 03:09:12,894 >> IN THE END THE IT WAS FUNDED 4371 03:09:12,894 --> 03:09:14,195 FROM NIDDK? 4372 03:09:14,195 --> 03:09:16,964 >> YES, MONEY DID NOT COME FROM 4373 03:09:16,964 --> 03:09:17,231 CONGRESS. 4374 03:09:17,231 --> 03:09:23,604 >> CAN YOU BRING EXAMPLES HOW TO 4375 03:09:23,604 --> 03:09:25,540 BRING THEM TOGETHER. 4376 03:09:25,540 --> 03:09:27,008 DID YOU ASK THEM TO COLLABORATE 4377 03:09:27,008 --> 03:09:29,076 OR INITIATE S NONE WERE DOING ON 4378 03:09:29,076 --> 03:09:29,811 THEIR OWN AND HOW SUCCESSFUL WAS 4379 03:09:29,811 --> 03:09:31,145 THAT? 4380 03:09:31,145 --> 03:09:36,184 >> FIRST, WE EXPECTED INSTEAD OF 4381 03:09:36,184 --> 03:09:41,222 DESCRIBING DISCREET PLANS AS 4382 03:09:41,222 --> 03:09:43,391 THEY ARE HAD DONE IN THE PAST 4383 03:09:43,391 --> 03:09:44,926 ABILITY TO SHARE RESOURCES THEY 4384 03:09:44,926 --> 03:09:46,461 CREATED, THEY HAD TO HAVE A 4385 03:09:46,461 --> 03:09:48,729 MECHANISM FOR OUTSIDE SHARING. 4386 03:09:48,729 --> 03:09:50,198 MANY FELT THEY WERE SHARING BY 4387 03:09:50,198 --> 03:09:53,534 SHARING INTERNALLY AND BECAME 4388 03:09:53,534 --> 03:09:57,972 INSTITUTIONAL RESOURCES AND WE 4389 03:09:57,972 --> 03:09:58,639 WANTED THEM TO BE NATIONAL EVEN 4390 03:09:58,639 --> 03:10:01,309 INTERNATIONAL RESOURCES. 4391 03:10:01,309 --> 03:10:02,677 THE FUNDING REQUEST FOR 4392 03:10:02,677 --> 03:10:04,545 APPLICATIONS CHANGED. 4393 03:10:04,545 --> 03:10:07,482 THE REVIEW PROCESS CHANGED. 4394 03:10:07,482 --> 03:10:10,184 IT REFLECTED OUR EXPECTATION 4395 03:10:10,184 --> 03:10:13,788 THAT THE GROUPS WOULD ACTUALLY 4396 03:10:13,788 --> 03:10:15,156 MEET AND SHARE AND DEVELOP 4397 03:10:15,156 --> 03:10:16,157 MECHANISMS NOT JUST TO SHARE 4398 03:10:16,157 --> 03:10:18,659 WITHIN THEIR SMALL GROUP BUT TO 4399 03:10:18,659 --> 03:10:19,460 SHARE OUTSIDE. 4400 03:10:19,460 --> 03:10:26,968 THAT WAS A CULTURE CHANGE. 4401 03:10:26,968 --> 03:10:29,103 THE POLY CYSTIC DISEASE KIDNEY 4402 03:10:29,103 --> 03:10:32,773 CENTERS DID IT AND THE UROLOGY 4403 03:10:32,773 --> 03:10:38,446 CENTERS DID IT FIRST AND THE 4404 03:10:38,446 --> 03:10:41,516 POLY CYSTIC NEXT AND THE O'BRIEN 4405 03:10:41,516 --> 03:10:42,750 CENTERS WERE NEXT. 4406 03:10:42,750 --> 03:10:44,051 EACH HAS THEIR OWN PERSONALITY 4407 03:10:44,051 --> 03:10:46,120 BUT THEY MEET AND PART OF THEIR 4408 03:10:46,120 --> 03:10:49,757 TASK IS TO DESCRIBE WHAT THEY 4409 03:10:49,757 --> 03:10:52,260 CAN COVER THE RESOURCES THEY 4410 03:10:52,260 --> 03:10:58,165 GENERATED CAN BE SHARED EX TERM 4411 03:10:58,466 --> 03:11:01,202 -- EXTERNALLY. 4412 03:11:01,202 --> 03:11:03,504 WE ASKED THEM TO DEVISE 4413 03:11:03,504 --> 03:11:05,273 RESOURCES THAT WOULD BE OF 4414 03:11:05,273 --> 03:11:08,075 GREATER VALUE TO THE COMMUNITY 4415 03:11:08,075 --> 03:11:11,612 AND JUSTIFY THEY'RE GENERALLY 4416 03:11:11,612 --> 03:11:14,215 USEFUL NOT JUST TO THEIR 4417 03:11:14,215 --> 03:11:22,189 LABORATORY OR INSTITUTION. 4418 03:11:22,189 --> 03:11:28,896 >> THERE'S A CONGRESSIONAL 4419 03:11:28,896 --> 03:11:30,031 MANDATE BUT DO THEY EXIST IN THE 4420 03:11:30,031 --> 03:11:31,098 ABSENCE OF THE MANDATE. 4421 03:11:31,098 --> 03:11:32,633 >> THAT'S GOING BEFORE MY TIME. 4422 03:11:32,633 --> 03:11:34,502 I COULD NOT ANSWER THAT 4423 03:11:34,502 --> 03:11:44,679 QUESTION. 4424 03:11:45,846 --> 03:11:47,114 >> THERE WAS A REQUEST FROM 4425 03:11:47,114 --> 03:11:49,016 PEDIATRIC KIDNEY DISEASE HAVE A 4426 03:11:49,016 --> 03:11:51,986 SIMILAR VENUE BUT DO NOT HAVE 4427 03:11:51,986 --> 03:11:53,921 THE SAME CONGRESSIONAL MANDATE. 4428 03:11:53,921 --> 03:11:54,488 >> I'LL ASK A DIFFERENT WAY 4429 03:11:54,488 --> 03:12:01,862 THEN. 4430 03:12:01,862 --> 03:12:03,731 >> IF THAT COMES FROM THE 4431 03:12:03,731 --> 03:12:05,633 CENTERS NOW -- SO WE'RE THINKING 4432 03:12:05,633 --> 03:12:06,734 ABOUT SUSTAINABILITY OF ANYTHING 4433 03:12:06,734 --> 03:12:07,802 WE CREATE. 4434 03:12:07,802 --> 03:12:09,837 SO THERE WAS AN ORIGINAL 4435 03:12:09,837 --> 03:12:10,905 CONGRESSIONAL MANDATE WITHOUT 4436 03:12:10,905 --> 03:12:14,942 FUNDING THAT GOT THINGS STARTED. 4437 03:12:14,942 --> 03:12:18,713 IS IT STILL IN THE ABSENCE OF 4438 03:12:18,713 --> 03:12:28,923 CONGRESSIONAL MANDATE IS IT 4439 03:12:28,923 --> 03:12:29,890 SUCCESSFUL ENOUGH? 4440 03:12:29,890 --> 03:12:32,960 >> THERE'S DIABETES AND DIGEST 4441 03:12:32,960 --> 03:12:34,595 IR DISEASE CENTER PROGRAMS. 4442 03:12:34,595 --> 03:12:38,199 THEY'RE SEEN AS USEFUL VENUES 4443 03:12:38,199 --> 03:12:45,239 FOR CREATING SCIENTIFIC 4444 03:12:45,239 --> 03:12:45,506 ADVANCES. 4445 03:12:45,506 --> 03:12:47,875 AND IF WE DIDN'T HAVE TO DO 4446 03:12:47,875 --> 03:12:49,510 THAT, WOULD WE DO THEM? 4447 03:12:49,510 --> 03:12:51,379 I DON'T THINK WE'D WALK AWAY. 4448 03:12:51,379 --> 03:13:00,021 THEY HAVE DEMONSTRATED VALUE. 4449 03:13:00,021 --> 03:13:00,955 >> THEY HAVE BEEN SERVING THE 4450 03:13:00,955 --> 03:13:11,232 COMMUNITY WELL. 4451 03:13:11,699 --> 03:13:12,833 >> WE APPRECIATE THE DIALOGUE. 4452 03:13:12,833 --> 03:13:17,938 >> I'VE BEEN PART OF THE 4453 03:13:17,938 --> 03:13:25,680 DIFFERENT STAGES AND THERE WERE 4454 03:13:25,680 --> 03:13:27,882 SOME FLAWS. 4455 03:13:27,882 --> 03:13:34,255 AND I THINK IT'S A GREAT 4456 03:13:34,255 --> 03:13:35,623 RESOURCE. 4457 03:13:35,623 --> 03:13:38,192 THAT'S PROGRESS. 4458 03:13:38,192 --> 03:13:48,569 >> AND WE OPERATE -- 4459 03:14:08,989 --> 03:14:11,892 >> TOOK MONEY PART OF A P30 OR 4460 03:14:11,892 --> 03:14:16,330 P50 YOU ADDED MONEY OR THE 4461 03:14:16,330 --> 03:14:17,531 BUDGET STAYED THE STATEMENT OR 4462 03:14:17,531 --> 03:14:18,265 THE APPROACH CHANGED? 4463 03:14:18,265 --> 03:14:21,435 >> LET'S START BY SAYING WE 4464 03:14:21,435 --> 03:14:25,840 CHANGED THE APPROACH FIRST 4465 03:14:25,840 --> 03:14:28,576 BECAUSE WE FELT THE INDEPENDENT 4466 03:14:28,576 --> 03:14:32,546 CENTERS WERE NOT AS BENEFICIAL 4467 03:14:32,546 --> 03:14:35,616 AS IF THEY WERE INVITED INTO OR 4468 03:14:35,616 --> 03:14:38,519 PLACED INTO A CONSORTIUM TYPE 4469 03:14:38,519 --> 03:14:39,186 STRUCTURE. 4470 03:14:39,186 --> 03:14:40,788 THE FUNDS THAT BECOME AVAILABLE 4471 03:14:40,788 --> 03:14:44,625 HAVE MORE TO DO WITH THE NIDDK 4472 03:14:44,625 --> 03:14:47,628 OVER ALL BUDGET AND THE BUDGET 4473 03:14:47,628 --> 03:14:49,497 FOR KIDNEY DISEASE AND 4474 03:14:49,497 --> 03:14:50,531 HEMATOLOGIC DISEASE. 4475 03:14:50,531 --> 03:14:54,068 IT'S NOT A CASE OF ANY ONE 4476 03:14:54,068 --> 03:14:56,971 CENTER HAD A FOOTPRINT OF MONEY. 4477 03:14:56,971 --> 03:14:59,607 THERE'S A COMMITMENT MADE BY 4478 03:14:59,607 --> 03:15:02,910 NIDDK FOR EACH OF THESE CENTERS 4479 03:15:02,910 --> 03:15:03,811 AND PROGRAMS. 4480 03:15:03,811 --> 03:15:08,783 IN UROLOGY AND DIGESTIVE 4481 03:15:08,783 --> 03:15:11,619 DISEASES LOU THE DECISION IS 4482 03:15:11,619 --> 03:15:13,687 MADE COMES OF THE OVER ALL 4483 03:15:13,687 --> 03:15:15,389 COMMITMENT TO THE NIDDK MAKES TO 4484 03:15:15,389 --> 03:15:18,826 RESEARCH IN ALTHOUGH DISEASE 4485 03:15:18,826 --> 03:15:24,398 AREAS RECALLING THE RO1 RESEARCH 4486 03:15:24,398 --> 03:15:25,666 PROGRAM PROJECT PAY LINE IS A 4487 03:15:25,666 --> 03:15:27,001 BIG AMOUNT OF MONEY. 4488 03:15:27,001 --> 03:15:29,603 THAT'S WHERE MOST THE FUNDING 4489 03:15:29,603 --> 03:15:30,671 GOES. 4490 03:15:30,671 --> 03:15:32,706 >> I HAVE A QUESTION OR ANY OR 4491 03:15:32,706 --> 03:15:39,313 ALL THE PANELISTS. 4492 03:15:39,313 --> 03:15:41,615 ONE QUESTION WE'VE BEEN 4493 03:15:41,615 --> 03:15:42,583 STRUGGING WITH IS SHOULD 4494 03:15:42,583 --> 03:15:44,785 LYMPHATICS HAVE A CENTRAL HOME 4495 03:15:44,785 --> 03:15:46,787 AND IF THE ANSWER IS YES, A 4496 03:15:46,787 --> 03:15:48,022 SECONDARY QUESTION IS SHOULD 4497 03:15:48,022 --> 03:15:51,091 THAT BE WITHIN THE NIH OR 4498 03:15:51,091 --> 03:15:52,326 OUTSIDE THE NIH? 4499 03:15:52,326 --> 03:15:57,031 SO, I'D LIKE TO ASK ON A 4500 03:15:57,031 --> 03:15:59,700 HYPOTHETICAL BASIS THE PROS AND 4501 03:15:59,700 --> 03:16:01,402 CONS OF THE NIH OR IN 4502 03:16:01,402 --> 03:16:02,236 PARTNERSHIP WITH THE NIH BUT 4503 03:16:02,236 --> 03:16:08,142 FROM THE OUTSIDE OPPOSED TO AND 4504 03:16:08,142 --> 03:16:18,385 THE INSTITUTE. 4505 03:16:20,221 --> 03:16:21,322 >> IT'S A DIFFERENT ISSUE. 4506 03:16:21,322 --> 03:16:22,590 THERE'S QUESTIONS I COULD SEE 4507 03:16:22,590 --> 03:16:24,525 GOING INTO THIS IN TERMS OF THE 4508 03:16:24,525 --> 03:16:28,128 TYPE OF SCIENCE YOU'RE LOOKING 4509 03:16:28,128 --> 03:16:30,097 TO DO AND THE PROXIMITY OF THE 4510 03:16:30,097 --> 03:16:31,665 RESEARCH QUESTIONS AND DESIGNS 4511 03:16:31,665 --> 03:16:37,471 TO THE KINDS OF THINGS NIH DOES. 4512 03:16:37,471 --> 03:16:39,673 IN SEARCH WAY AS WELL AS THEN 4513 03:16:39,673 --> 03:16:41,609 THINKING ABOUT THE AGENDA AND 4514 03:16:41,609 --> 03:16:52,019 HOW THE AGENDA WILL GO. 4515 03:16:52,586 --> 03:16:55,890 AND THERE'S CENTRIC SUPPORTS AS 4516 03:16:55,890 --> 03:16:57,725 WELL AS THE CROSS-CUTTING NATURE 4517 03:16:57,725 --> 03:17:01,495 OF THE INSTITUTES AND CENTERS. 4518 03:17:01,495 --> 03:17:02,663 OBVIOUSLY THERE'S 27 INSTITUTES 4519 03:17:02,663 --> 03:17:04,298 AND CENTERS BRINGING THEM 4520 03:17:04,298 --> 03:17:05,432 TOGETHER HAS CHALLENGES TOO. 4521 03:17:05,432 --> 03:17:07,701 SO I THINK IT'S JUST SOMETHING 4522 03:17:07,701 --> 03:17:08,602 TO THINK ABOUT PARTICULAR GOALS 4523 03:17:08,602 --> 03:17:10,905 THAT YOU'RE GOING FOR AND THE 4524 03:17:10,905 --> 03:17:11,605 SUSTAINABILITY THAT YOU'RE 4525 03:17:11,605 --> 03:17:15,309 LOOKING FOR. 4526 03:17:15,309 --> 03:17:18,078 WHERE THINGS MIGHT GO AND WITH 4527 03:17:18,078 --> 03:17:20,047 PCORI WHERE THERE WAS A QUESTION 4528 03:17:20,047 --> 03:17:22,216 SET UP TO BE INDEPENDENT THAT 4529 03:17:22,216 --> 03:17:25,452 WAS REALLY TRULY ABOUT THE 4530 03:17:25,452 --> 03:17:30,524 DESIRE AND CONVERSATIONS WING 4531 03:17:30,524 --> 03:17:31,992 OUT THE WERE IMPORTANT TO BE 4532 03:17:31,992 --> 03:17:34,228 ABOUT TRANSLATION OF IMPACT AND 4533 03:17:34,228 --> 03:17:35,629 MOVE BEYOND THE BASIC RESEARCH 4534 03:17:35,629 --> 03:17:37,364 AND THINK ABOUT THOSE THINGS SO 4535 03:17:37,364 --> 03:17:40,701 IS THE AGENDA IS SHAPED IN SOME 4536 03:17:40,701 --> 03:17:41,335 FUNDAMENTALLY DIFFERENT WAYS. 4537 03:17:41,335 --> 03:17:44,138 THEY'RE NOT APPLICABLE TO NIH 4538 03:17:44,138 --> 03:17:47,441 AND WE'RE HOPING TO SHARE 4539 03:17:47,441 --> 03:17:51,812 KNOWLEDGE HOW TO DO THIS AND 4540 03:17:51,812 --> 03:17:52,212 THERE'S DIFFERENT 4541 03:17:52,212 --> 03:17:52,913 INFRASTRUCTURE. 4542 03:17:52,913 --> 03:17:53,614 IT'S AN IMPORTANT QUESTION TO 4543 03:17:53,614 --> 03:17:54,949 THINK WHAT THE SCALE AND FUNDING 4544 03:17:54,949 --> 03:17:57,785 WOULD BE AND SUSTAINABILITY 4545 03:17:57,785 --> 03:18:01,221 QUESTIONS ARE. 4546 03:18:01,221 --> 03:18:03,023 >> CAN I ASK, COULD YOU IDENTIFY 4547 03:18:03,023 --> 03:18:09,930 A PRICE THAT WAS PAID FOR -- I 4548 03:18:09,930 --> 03:18:12,232 HEAR THE BENEFITS IS THERE 4549 03:18:12,232 --> 03:18:14,034 ANYTHING ON THE NEGATIVE SIDE WE 4550 03:18:14,034 --> 03:18:16,937 ON THE NIH COULD HAVE DONE? 4551 03:18:16,937 --> 03:18:19,306 >> I WASN'T THERE DURING 4552 03:18:19,306 --> 03:18:22,876 START-UP SO I CAN'T SPEAK IT THE 4553 03:18:22,876 --> 03:18:24,345 SPECIFIC ISSUES IN THAT REGARD I 4554 03:18:24,345 --> 03:18:27,181 WAS AT NIH BEFORE I WENT TO 4555 03:18:27,181 --> 03:18:31,118 PCORI SO I CAN RELATE A LITTLE 4556 03:18:31,118 --> 03:18:32,653 BIT IN HOW THINGS ARE DIFFERENT. 4557 03:18:32,653 --> 03:18:40,728 UP WITH REALITY IS A STAND ALONE 4558 03:18:40,728 --> 03:18:41,662 FUNDING QUESTION FROM CONGRESS 4559 03:18:41,662 --> 03:18:43,998 AND SEE OTHER THINGS WHICH IS A 4560 03:18:43,998 --> 03:18:44,631 DIFFICULT QUESTION OR COULD GO 4561 03:18:44,631 --> 03:18:49,903 AWAY. 4562 03:18:49,903 --> 03:18:52,172 THAT'S SOMETHING WE MUST ALWAYS 4563 03:18:52,172 --> 03:18:53,741 BE MINDFUL OF WITH THE 4564 03:18:53,741 --> 03:18:58,712 STRUCTURES THERE. 4565 03:18:58,712 --> 03:19:00,581 OTHER ISSUES WILL BE 4566 03:19:00,581 --> 03:19:02,216 CONNECTIVITY TO SOME OF THE 4567 03:19:02,216 --> 03:19:06,120 OTHER SOURCES. 4568 03:19:06,120 --> 03:19:09,590 THERE'S A COST OF START UP TIME 4569 03:19:09,590 --> 03:19:11,025 TO ANY ORGANIZATION AND THERE'S 4570 03:19:11,025 --> 03:19:16,764 A COST IN TERMS OF ACTIVATION. 4571 03:19:16,764 --> 03:19:18,298 THERE'S DIFFERENT MODELS OUTSIDE 4572 03:19:18,298 --> 03:19:20,067 OR INSIDE AND OTHER RECENT 4573 03:19:20,067 --> 03:19:25,272 EXAMPLES TO BE LOOKED AT IN THAT 4574 03:19:25,272 --> 03:19:29,643 REGARD AND I THINK DIFFERENT 4575 03:19:29,643 --> 03:19:38,685 WAYS TO DO THEM. 4576 03:19:38,685 --> 03:19:43,957 THE LAST TOPIC WAS INTEREST IN 4577 03:19:43,957 --> 03:19:45,759 MORE INVESTIGATORS FOCUSSED ON A 4578 03:19:45,759 --> 03:19:47,194 DISEASE AREA AND CENTER FOR 4579 03:19:47,194 --> 03:19:49,763 EXCELLENCE AND SUSTAINABILITY 4580 03:19:49,763 --> 03:19:54,935 AND CONSISTENCY OF FUNDING IS A 4581 03:19:54,935 --> 03:19:56,470 HUGE PART OF THAT AND THE 4582 03:19:56,470 --> 03:19:58,205 SIGNALLING OF CONSISTENCY OF 4583 03:19:58,205 --> 03:20:00,307 FUNDING IN THE FUTURE. 4584 03:20:00,307 --> 03:20:01,608 THAT'S A HUGE PART OF GETTING 4585 03:20:01,608 --> 03:20:11,785 PEOPLE TO FOCUS ON AN AREA. 4586 03:20:11,785 --> 03:20:13,954 THE MATURITY OF THIS SPACE 4587 03:20:13,954 --> 03:20:18,325 INFORMS THE QUESTION. 4588 03:20:18,325 --> 03:20:28,802 AND WITH EXTERNAL, CONTROL. 4589 03:20:29,069 --> 03:20:32,106 SO, I THINK IT IS EASIER TO HAVE 4590 03:20:32,106 --> 03:20:33,073 A MORE HOLISTIC AGENDA THAT 4591 03:20:33,073 --> 03:20:36,009 LOOKS AT THE PIPELINE FROM BASIC 4592 03:20:36,009 --> 03:20:37,377 SCIENCE RESEARCH TO 4593 03:20:37,377 --> 03:20:39,146 IMPLEMENTATION WHEN SOMETHING IS 4594 03:20:39,146 --> 03:20:40,380 HOSTED EXTERNALLY BECAUSE YOU 4595 03:20:40,380 --> 03:20:41,882 CAN GET PEOPLE INVESTED IN A 4596 03:20:41,882 --> 03:20:43,283 DIFFERENT WAY. 4597 03:20:43,283 --> 03:20:45,986 YOU CAN GIVE THEM MORE 4598 03:20:45,986 --> 03:20:47,788 MEANINGFUL ROLES IN PART JUST 4599 03:20:47,788 --> 03:20:50,190 PARTLY DUE TO RULES AND RED 4600 03:20:50,190 --> 03:20:50,424 TAPE. 4601 03:20:50,424 --> 03:20:53,060 AND THAT LEADS TO A LONGER TERM 4602 03:20:53,060 --> 03:20:53,694 INSTITUTIONAL INVESTMENT FROM 4603 03:20:53,694 --> 03:20:57,264 THE PARTNERS. 4604 03:20:57,264 --> 03:20:58,432 BUT, THERE ARE A LOT OF 4605 03:20:58,432 --> 03:20:59,566 DIFFERENT PEOPLE WITH DIFFERENT 4606 03:20:59,566 --> 03:21:01,068 OPINIONS ON PRIORITIES AND ITS 4607 03:21:01,068 --> 03:21:02,769 TAKES MORE TIME AS LAURA SAID 4608 03:21:02,769 --> 03:21:06,740 AND THERE IS A WHOLE NORMING 4609 03:21:06,740 --> 03:21:08,876 PERIOD TO THE PRIORITIES THAT 4610 03:21:08,876 --> 03:21:10,277 OTHER STAKEHOLDERS HAVE WHEN YOU 4611 03:21:10,277 --> 03:21:17,417 BRING THEM IN AS EQUAL PARTNERS 4612 03:21:17,417 --> 03:21:19,586 MAY DIFFERENT THAN WHEN YOU 4613 03:21:19,586 --> 03:21:20,754 THOUGHT THEY WERE INVITED 4614 03:21:20,754 --> 03:21:20,988 GUESTS. 4615 03:21:20,988 --> 03:21:22,189 YOU HAVE TO BE READY FOR THAT 4616 03:21:22,189 --> 03:21:25,893 AND READY FOR THE FACT THAT 4617 03:21:25,893 --> 03:21:26,960 PEOPLE'S PRIORITIES MAY SHIFT 4618 03:21:26,960 --> 03:21:28,562 OVER TIME. 4619 03:21:28,562 --> 03:21:33,734 I ESPECIALLY ON THE INDUSTRY END 4620 03:21:33,734 --> 03:21:35,002 INVOLVING INDUSTRY, INDUSTRY ARE 4621 03:21:35,002 --> 03:21:37,938 A SHORTER CYCLE THAN WE ARE. 4622 03:21:37,938 --> 03:21:39,473 SO THEIR PRIORITIES MAY CHANGE 4623 03:21:39,473 --> 03:21:44,878 IN SIX MONTHS, A YEAR PRETTY 4624 03:21:44,878 --> 03:21:46,246 DRAMATICALLY AND DIVESTMENT UP 4625 03:21:46,246 --> 03:21:47,047 CERTAIN AREAS. 4626 03:21:47,047 --> 03:21:53,554 THE REALITY IS WE CANNOT COUNT 4627 03:21:53,554 --> 03:21:57,424 ON -- YOU CAN CONTRACTUALLY 4628 03:21:57,424 --> 03:21:58,926 OBLIGATE COMPANIES OWN A 4629 03:21:58,926 --> 03:22:03,130 CONTRACT FOR FIVE OR SIX-YEAR 4630 03:22:03,130 --> 03:22:04,932 PERIOD BUT CAN'T GUARANTEE THEIR 4631 03:22:04,932 --> 03:22:05,465 ORGANIZATIONAL BUSINESS 4632 03:22:05,465 --> 03:22:08,168 PRIORITIES WILL STAY THE 4633 03:22:08,168 --> 03:22:08,435 STATEMENT. 4634 03:22:08,435 --> 03:22:09,102 THIS COMES TO THE GENERAL IDEA 4635 03:22:09,102 --> 03:22:14,942 OF WHAT YOU MEAN BY HOME. 4636 03:22:14,942 --> 03:22:22,216 IS HOME THE INSTITUTION THAT IS 4637 03:22:22,216 --> 03:22:24,251 MORE DAMAGING? 4638 03:22:24,251 --> 03:22:27,721 AND SO I THINK THAT AS LONG AS 4639 03:22:27,721 --> 03:22:28,355 THERE'S COMMITMENT WITHIN THE 4640 03:22:28,355 --> 03:22:29,990 NIH TO OVER A LONG PERIOD OF 4641 03:22:29,990 --> 03:22:36,697 TIME PROVIDE THAT MONEY AND TO 4642 03:22:36,697 --> 03:22:37,864 HAVE CONSISTENCY OR OTHER 4643 03:22:37,864 --> 03:22:39,566 SOURCES OF FUNDING AND 4644 03:22:39,566 --> 03:22:40,200 APPROPRIATIONS, THAT'S GREAT. 4645 03:22:40,200 --> 03:22:44,338 THE LAST THING YOU WANT TO DO IS 4646 03:22:44,338 --> 03:22:47,241 GIVE SOMETHING A FOUR-YEAR TIME 4647 03:22:47,241 --> 03:22:48,742 LINE AND HAVE IT DISSOLVE BEFORE 4648 03:22:48,742 --> 03:22:50,210 ACCOMPLISHING ITS GOALS BECAUSE 4649 03:22:50,210 --> 03:22:55,882 WE ALL KNOW MOVING THE NOEEDLE N 4650 03:22:55,882 --> 03:22:58,819 THINGS LIKE THIS TAKES WORK. 4651 03:22:58,819 --> 03:22:59,886 HOPEFULLY THAT'S HELPFUL. 4652 03:22:59,886 --> 03:23:03,290 >> QUICK TECHNOLOGY QUESTION 4653 03:23:03,290 --> 03:23:05,092 FROM THE EXTERNAL FOLKS AND THEN 4654 03:23:05,092 --> 03:23:08,695 A MORE GENERAL QUESTION. 4655 03:23:08,695 --> 03:23:11,231 FIRST, A LOT OF LYMPHATIC 4656 03:23:11,231 --> 03:23:17,638 RESEARCH FUNDING IS CONGRSAL - 4657 03:23:17,638 --> 03:23:20,374 CONGRESSIONALLY DIRECTED AND 4658 03:23:20,374 --> 03:23:22,209 LOBBY EFFORTS PREVENTS A 4659 03:23:22,209 --> 03:23:23,143 POSITIVE FEEDBACK LOOP. 4660 03:23:23,143 --> 03:23:26,813 IS IT THE SAME FOR PEOPLE IN 4661 03:23:26,813 --> 03:23:32,019 PCORI OR THE FNIM OR IS THERE A 4662 03:23:32,019 --> 03:23:32,886 DIFFERENCE IN THAT SPACE. 4663 03:23:32,886 --> 03:23:35,622 >> IN TERMS OF LOBBY? 4664 03:23:35,622 --> 03:23:38,025 >> SO, ARE YOU ABLE TO 4665 03:23:38,025 --> 03:23:39,159 COMMUNICATE WITH CONGRESS AND 4666 03:23:39,159 --> 03:23:41,461 SAY, HEY, THIS IS A PRIORITY FOR 4667 03:23:41,461 --> 03:23:42,129 US. 4668 03:23:42,129 --> 03:23:43,463 WE'D LIKE THIS TO BE WRITTEN 4669 03:23:43,463 --> 03:23:44,765 INTO NEXT YEAR'S APPROPRIATION 4670 03:23:44,765 --> 03:23:49,336 OR IS THAT NOT PERMITTED FROM 4671 03:23:49,336 --> 03:23:49,770 WHERE YOU ARE. 4672 03:23:49,770 --> 03:23:53,173 >> FIRST, WE HAVE TEN-YEAR 4673 03:23:53,173 --> 03:23:59,646 FUNDING WHICH IS AN ADVANTAGE 4674 03:23:59,646 --> 03:24:01,815 AND ALSO WE DON'T LOBBY PER SE 4675 03:24:01,815 --> 03:24:03,984 IN THAT WAY TO BRING PRIORITIES. 4676 03:24:03,984 --> 03:24:06,086 OUR PRIORITIES COME FROM 4677 03:24:06,086 --> 03:24:06,420 STAKEHOLDERS. 4678 03:24:06,420 --> 03:24:08,755 SO STAKEHOLDERS WOULD BE THE 4679 03:24:08,755 --> 03:24:10,924 ONES TO SPEAK WITH CONGRESS 4680 03:24:10,924 --> 03:24:14,795 ABOUT HOW THEY FEEL PCORIs DOING 4681 03:24:14,795 --> 03:24:16,630 AND WHAT IS IMPORTANT FOR PCORI 4682 03:24:16,630 --> 03:24:17,964 TO DO IN THE FUTURE. 4683 03:24:17,964 --> 03:24:21,401 AND I THINK THEY MORE THAN WE 4684 03:24:21,401 --> 03:24:24,137 SPEAK IN THAT REGARD WITH 4685 03:24:24,137 --> 03:24:24,371 RESPECT. 4686 03:24:24,371 --> 03:24:26,373 WE TALK TO CONGRESS. 4687 03:24:26,373 --> 03:24:27,841 IT'S ABOUT EDUCATION AND 4688 03:24:27,841 --> 03:24:28,542 AWARENESS BUILDING OF THE THINGS 4689 03:24:28,542 --> 03:24:30,243 WE'RE CONTRIBUTING AND HOW WE'RE 4690 03:24:30,243 --> 03:24:33,513 CONTRIBUTING AND ARE ALWAYS 4691 03:24:33,513 --> 03:24:34,648 HAPPY TO TALK IF THEY HAVE 4692 03:24:34,648 --> 03:24:35,749 SPECIFIC QUESTIONS BUT IT'S 4693 03:24:35,749 --> 03:24:37,651 FEDERAL MONEY AND TRY TO RESPECT 4694 03:24:37,651 --> 03:24:39,686 THE RULES THAT ARE THERE 4695 03:24:39,686 --> 03:24:40,721 ACKNOWLEDGING SOME OF THE 4696 03:24:40,721 --> 03:24:41,755 DIFFERENCES AGAIN BECAUSE WE'RE 4697 03:24:41,755 --> 03:24:44,758 NOT REPRESENTED BY THE 4698 03:24:44,758 --> 03:24:45,525 ADMINISTRATIVE PORTION OF THE 4699 03:24:45,525 --> 03:24:46,193 FEDERAL GOVERNMENT SO THERE'S 4700 03:24:46,193 --> 03:24:48,495 WAYS WE TALK MORE DIRECTLY 4701 03:24:48,495 --> 03:24:49,463 ESPECIALLY WHEN IT COMES TIMES 4702 03:24:49,463 --> 03:24:50,697 WITH REGARD TO THE 4703 03:24:50,697 --> 03:24:51,298 APPROPRIATIONS BUT IT'S NOT 4704 03:24:51,298 --> 03:24:53,633 ABOUT BRINGING OUR PRIORITIES 4705 03:24:53,633 --> 03:24:53,867 FORWARD. 4706 03:24:53,867 --> 03:24:56,069 >> WHAT ABOUT THE FOUNDATION? 4707 03:24:56,069 --> 03:24:59,806 WITH 4708 03:24:59,806 --> 03:25:02,209 >> WE DO NOT LOBBY. 4709 03:25:02,209 --> 03:25:03,143 WE DO EDUCATION OF CONGRESS. 4710 03:25:03,143 --> 03:25:05,645 THEY'RE NOT THE SAME THING, 4711 03:25:05,645 --> 03:25:06,413 OBVIOUSLY. 4712 03:25:06,413 --> 03:25:09,349 WE DO NOT ATTEMPT TO DEAL WITH 4713 03:25:09,349 --> 03:25:11,551 LARGE CONGRESSIONAL S FOR OUR 4714 03:25:11,551 --> 03:25:11,818 PROGRAMS. 4715 03:25:11,818 --> 03:25:13,854 THEY'RE LARGELY COMING THROUGH 4716 03:25:13,854 --> 03:25:15,989 EXISTING PRIORITIES WITHIN NIH 4717 03:25:15,989 --> 03:25:21,595 OR PRIVATE SECTOR.THEY'RE LARGE 4718 03:25:21,595 --> 03:25:22,229 EXISTING PRIORITIES WITHIN NIH 4719 03:25:22,229 --> 03:25:32,539 OR PRIVATE SECTOR. 4720 03:25:46,853 --> 03:25:46,920 4721 03:25:46,920 --> 03:25:50,056 >> IT'S CHANGING PRACTICES AND 4722 03:25:50,056 --> 03:25:51,091 CLINICIAN EDUCATION AND IT HAS A 4723 03:25:51,091 --> 03:25:53,126 LOT OF DIFFERENT THINGS AND SITS 4724 03:25:53,126 --> 03:25:55,128 OUTSIDE OF DIRECT RESEARCH. 4725 03:25:55,128 --> 03:25:58,198 CAN YOU SPEAK TO WHETHER AN 4726 03:25:58,198 --> 03:26:00,801 INTERNAL VERSUS EXTERNAL SCIENCE 4727 03:26:00,801 --> 03:26:03,236 THAT WAS TALKED ABOUT, HOW DOES 4728 03:26:03,236 --> 03:26:04,871 THAT VIEW WITH REGARDS TO THOSE 4729 03:26:04,871 --> 03:26:05,939 KIND OF THINGS. 4730 03:26:05,939 --> 03:26:11,645 SPECIFICALLY WHAT DOESN'T WORK 4731 03:26:11,645 --> 03:26:15,615 WITH THE NIDDK CENTERS VERSUS 4732 03:26:15,615 --> 03:26:15,949 PCORI. 4733 03:26:15,949 --> 03:26:16,883 WHAT DOES WORK? 4734 03:26:16,883 --> 03:26:17,884 I WOULD LIKE TO HEAR BOTH GOOD 4735 03:26:17,884 --> 03:26:28,028 AND BAD. 4736 03:26:28,662 --> 03:26:31,498 >> MY PRIOR EXPERIENCE WAS WITH 4737 03:26:31,498 --> 03:26:33,567 THE NATIONAL GENOME RESEARCH 4738 03:26:33,567 --> 03:26:37,370 INSTITUTE WHICH IS CENTERED 4739 03:26:37,370 --> 03:26:40,841 FOCUS AND BASIC RESEARCH AND 4740 03:26:40,841 --> 03:26:41,842 ALSO TRANSITIONALLY MINDED AND 4741 03:26:41,842 --> 03:26:46,346 WE ALSO SPOKE TO PAYER 4742 03:26:46,346 --> 03:26:50,116 COMMUNITIES. 4743 03:26:50,116 --> 03:26:52,185 PCORI LOOKS TO ENSURE OUR PAIR 4744 03:26:52,185 --> 03:26:53,186 STAKEHOLDERS KNOW WHAT WE'RE 4745 03:26:53,186 --> 03:26:58,925 DOING AND MEETING OUR NEEDS AND 4746 03:26:58,925 --> 03:27:06,399 CONTRIBUTING TO FUNDING AND ONE 4747 03:27:06,399 --> 03:27:07,634 THING THAT IS DIFFERENT IS WE 4748 03:27:07,634 --> 03:27:08,869 CAN'T HAVE FULL CONVERSATIONS 4749 03:27:08,869 --> 03:27:13,773 WITH OTHER AGENCIES BECAUSE 4750 03:27:13,773 --> 03:27:16,343 WE'RE NOT PART OF THE GOVERNMENT 4751 03:27:16,343 --> 03:27:17,310 SO THERE'S ASPECTS TO BEING NIH 4752 03:27:17,310 --> 03:27:19,846 WHERE WITH A SISTER AGENCY YOU 4753 03:27:19,846 --> 03:27:23,283 CAN HAVE COVERINGS WITH CMS OR 4754 03:27:23,283 --> 03:27:25,252 OTHERS AND WE'RE HAPPY TO SPEAK 4755 03:27:25,252 --> 03:27:27,420 WITH THEM AND ANSWER QUESTIONS 4756 03:27:27,420 --> 03:27:29,289 AND WANT TO BE INFORMATIVE SO 4757 03:27:29,289 --> 03:27:30,223 FROM THAT PERSPECTIVE IS THE 4758 03:27:30,223 --> 03:27:34,761 EVIDENCE WE ARE FUNDING HELPFUL 4759 03:27:34,761 --> 03:27:36,730 TO YOU IN YOUR WORK BUT WON'T 4760 03:27:36,730 --> 03:27:38,765 HAVE THE SAME CONVERSATION WITH 4761 03:27:38,765 --> 03:27:42,969 THEM A SISTER AGENCY WILL HAVE. 4762 03:27:42,969 --> 03:27:47,040 >> THE FOUDATION IS A LITTLE BIT 4763 03:27:47,040 --> 03:27:53,346 IN THE MIDDLE USED TO BE WITH A 4764 03:27:53,346 --> 03:28:00,253 BADGE TO COME IN BECAUSE FNIMH 4765 03:28:00,253 --> 03:28:01,655 EMPLOYEES ARE BADGED AND WE HAVE 4766 03:28:01,655 --> 03:28:02,289 MORE FLEXIBILITY IN WHAT 4767 03:28:02,289 --> 03:28:09,062 PRIORITIES ARE. 4768 03:28:09,062 --> 03:28:12,299 IN A PUBLIC FORUM YOU WON'T GET 4769 03:28:12,299 --> 03:28:14,200 COMPANY REPRESENTATIVES TO TALK 4770 03:28:14,200 --> 03:28:17,070 ABOUT THEIR PRIORITIES. 4771 03:28:17,070 --> 03:28:24,778 WE DON'T WANT THEM TO KNOW TRULY 4772 03:28:24,778 --> 03:28:26,212 PROPRIETARY INFORMATION AND 4773 03:28:26,212 --> 03:28:27,347 THINGS TANGENTIAL TO THAT 4774 03:28:27,347 --> 03:28:28,648 COMPANIES WON'T SHARE IT IN 4775 03:28:28,648 --> 03:28:29,683 PUBLIC FORUM. 4776 03:28:29,683 --> 03:28:35,288 THEY'LL SHARE IT ONE-ON-ONE AND 4777 03:28:35,288 --> 03:28:38,558 SO WE HAVE MORE FLEXIBILITY TO 4778 03:28:38,558 --> 03:28:38,992 ACTIVELY ENGAGE THE 4779 03:28:38,992 --> 03:28:44,598 STAKEHOLDERS. 4780 03:28:44,598 --> 03:28:50,203 WE HAVE ABILITY TO DIRECTLY 4781 03:28:50,203 --> 03:28:56,309 CONTRACT AND NOT ISSUE 4782 03:28:56,309 --> 03:28:57,544 COMPETITIONS AND WE CAN MOVE 4783 03:28:57,544 --> 03:28:58,411 FASTER AND THAT'S A BIG 4784 03:28:58,411 --> 03:29:08,788 ADVANTAGE IN CERTAIN CASES. 4785 03:29:08,788 --> 03:29:09,823 WE'RE A SEPARATE NONPROFIT. 4786 03:29:09,823 --> 03:29:12,025 I THINK THOSE ARE THE TYPES OF 4787 03:29:12,025 --> 03:29:15,729 THINGS YOU'RE ASKING ABOUT. 4788 03:29:15,729 --> 03:29:19,432 THE DRAW BACKS ARE EVERYTHING IS 4789 03:29:19,432 --> 03:29:21,835 CONVINCING EVERYONE TO DO IT. 4790 03:29:21,835 --> 03:29:23,370 SO WE DON'T HAVE A LOT WE DON'T 4791 03:29:23,370 --> 03:29:25,305 FUNCTION FROM ENDOWMENT. 4792 03:29:25,305 --> 03:29:27,974 WE HAVE TO FUND RAISE FOR OUR 4793 03:29:27,974 --> 03:29:31,444 PROGRAMS AND FOLLOW OTHER 4794 03:29:31,444 --> 03:29:32,479 PEOPLE'S PRIORITIES. 4795 03:29:32,479 --> 03:29:38,051 IT'S THE ART AS I MENTIONED OF 4796 03:29:38,051 --> 03:29:40,053 BUILDING CONSENSUS AND ALIGNING 4797 03:29:40,053 --> 03:29:40,687 STAKEHOLDERS AND THAT'S HARD 4798 03:29:40,687 --> 03:29:43,456 WHEN YOU DON'T HAVE A BASE 4799 03:29:43,456 --> 03:29:45,125 AMOUNT OF FUNDING TO START FROM. 4800 03:29:45,125 --> 03:29:47,694 IN THIS CASE IF YOU LOOK AT 4801 03:29:47,694 --> 03:29:48,495 APPROPRIATIONS OR SOMETHING 4802 03:29:48,495 --> 03:29:49,796 SIMILAR, THAT MAY NOT BE THE 4803 03:29:49,796 --> 03:29:51,531 CASE AND THAT'S NOT THE CASE FOR 4804 03:29:51,531 --> 03:29:58,204 PCORI OPERATING FROM AN EXISTING 4805 03:29:58,204 --> 03:29:58,538 BASE. 4806 03:29:58,538 --> 03:30:00,607 >> I WOULD LOVE TO INVITE THE 4807 03:30:00,607 --> 03:30:02,976 COPD TEAM TO ALSO OPINE ON THE 4808 03:30:02,976 --> 03:30:08,014 QUESTION TO GIVE ANOTHER 4809 03:30:08,014 --> 03:30:15,989 PERSPECTIVE. 4810 03:30:15,989 --> 03:30:18,658 >> A LOT OF THINGS TOUCHED THE 4811 03:30:18,658 --> 03:30:20,393 COPD AREA IN THERE'S NO 4812 03:30:20,393 --> 03:30:22,028 SET-ASIDES AND THE CONGRESSIONAL 4813 03:30:22,028 --> 03:30:24,898 MANDATE CAME WITH PUT THE PLAN 4814 03:30:24,898 --> 03:30:26,099 TOGETHER BUT DIDN'T COME WITH 4815 03:30:26,099 --> 03:30:27,534 FUNDING TO DO ANYTHING. 4816 03:30:27,534 --> 03:30:29,002 THERE'S NOTHING IN THERE THAT 4817 03:30:29,002 --> 03:30:30,470 SAYS CREATE THIS OR THAT. 4818 03:30:30,470 --> 03:30:33,940 IT'S MEANT TO BRING TOGETHER THE 4819 03:30:33,940 --> 03:30:36,209 COMMUNITY TO USE WHATEVER 4820 03:30:36,209 --> 03:30:39,012 RESOURCES ARE AT THEIR DISPOSAL 4821 03:30:39,012 --> 03:30:40,980 TO MAKE IT A PRIORITY. 4822 03:30:40,980 --> 03:30:46,219 CLEARLY FOR NHLBI THIS IS A 4823 03:30:46,219 --> 03:30:51,791 PRIMARY AREA FOR LUNG PROGRAM. 4824 03:30:51,791 --> 03:30:53,560 IT'S A BIG AREA FROM 4825 03:30:53,560 --> 03:30:55,061 IMPLEMENTATION AND OUTREACH AND 4826 03:30:55,061 --> 03:30:55,361 EDUCATION. 4827 03:30:55,361 --> 03:30:57,764 AND IT'S BEEN THAT WAY FOR A 4828 03:30:57,764 --> 03:30:58,431 WHILE SO IT ISN'T ANYTHING NEW 4829 03:30:58,431 --> 03:31:02,569 FOR US. 4830 03:31:02,569 --> 03:31:05,672 IN A WAY THIS IS AN ATTEMPT TO 4831 03:31:05,672 --> 03:31:07,407 GO AFTER THE BIGGEST POOL OF 4832 03:31:07,407 --> 03:31:09,709 RESOURCE OUT THERE THE RO1 POOL. 4833 03:31:09,709 --> 03:31:13,146 FOR US WHAT WE'VE DONE IS TRIED 4834 03:31:13,146 --> 03:31:15,014 HARD USING A TRACKING TOOL AND 4835 03:31:15,014 --> 03:31:16,416 OTHER MEANS TO PUSH THE 4836 03:31:16,416 --> 03:31:17,283 COMMUNITY INTO THAT POOL AND SAY 4837 03:31:17,283 --> 03:31:18,818 YOU DON'T NEED US TO TELL YOU TO 4838 03:31:18,818 --> 03:31:19,519 CREATE CENTERS. 4839 03:31:19,519 --> 03:31:21,755 YOU DON'T NEED US TO TELL YOU TO 4840 03:31:21,755 --> 03:31:22,055 DO TRIALS. 4841 03:31:22,055 --> 03:31:25,692 WE DON'T NEED TO TELL YOU WHAT 4842 03:31:25,692 --> 03:31:27,660 MECHANISM TO USE BECAUSE EVERY 4843 03:31:27,660 --> 03:31:28,695 MECHANISM IS AVAILABLE TO YOU. 4844 03:31:28,695 --> 03:31:29,963 COME TO US AND BRING US YOUR 4845 03:31:29,963 --> 03:31:31,865 BEST IDEAS AND HOW YOU WANT TO 4846 03:31:31,865 --> 03:31:34,167 CONSTRUCT THEM AND WE'LL TELL 4847 03:31:34,167 --> 03:31:37,303 YOU WHETHER THAT'S SOMETHING WE 4848 03:31:37,303 --> 03:31:41,141 CAN EMBARK ON OR CONSIDER AND I 4849 03:31:41,141 --> 03:31:43,510 THINK THAT'S HOW WE'VE BEEN 4850 03:31:43,510 --> 03:31:45,311 APPROACHING THIS AND AGAIN IT'S 4851 03:31:45,311 --> 03:31:48,448 A WORK IN PROGRESS SO WE DON'T 4852 03:31:48,448 --> 03:31:52,085 HAVE THE ANSWER TO THIS BUT HAVE 4853 03:31:52,085 --> 03:31:55,622 USED A VARIETY OF MECHANISM TO 4854 03:31:55,622 --> 03:31:56,856 STIMULATE THE FIELD AND OTHER 4855 03:31:56,856 --> 03:32:01,728 AREAS WE DON'T TOUCH ON QUITE AS 4856 03:32:01,728 --> 03:32:04,230 EXTENSIVELY BUT OUR PARTNERSHIPS 4857 03:32:04,230 --> 03:32:05,765 ARE PRETTY BROAD. 4858 03:32:05,765 --> 03:32:07,467 WITH OUR EFFORTS WITH CDC THEY 4859 03:32:07,467 --> 03:32:12,472 HAVE A DEDICATED AREA COLLECTING 4860 03:32:12,472 --> 03:32:15,542 PREVALENCE INCIDENT DATA AND 4861 03:32:15,542 --> 03:32:19,546 TRACKING MORTALITY AND HEALTH 4862 03:32:19,546 --> 03:32:20,446 CARE UTILIZATION. 4863 03:32:20,446 --> 03:32:21,381 THERE'S DIFFERENT WAYS AND 4864 03:32:21,381 --> 03:32:22,482 YOU'RE HEARING THEM THROUGH THE 4865 03:32:22,482 --> 03:32:23,716 FOUNDATION AND KIDNEY CENTERS 4866 03:32:23,716 --> 03:32:27,821 AND OTHER WAYS AND I THINK AGAIN 4867 03:32:27,821 --> 03:32:30,190 SOMEBODY SAID IT COMES DOWN TO 4868 03:32:30,190 --> 03:32:35,728 THE QUESTION THAT YOU'RE TRYING 4869 03:32:35,728 --> 03:32:37,931 TO ADDRESS WHERE THE FIELD IS 4870 03:32:37,931 --> 03:32:40,533 AND MOST POTENTIAL IS FOR NOT 4871 03:32:40,533 --> 03:32:44,204 ONLY A STREAM OF SUPPORT TO 4872 03:32:44,204 --> 03:32:46,206 ALLOW YOU TO CAPITALIZE ON 4873 03:32:46,206 --> 03:32:47,740 POTENTIAL OPPORTUNITIES BUT AT 4874 03:32:47,740 --> 03:32:49,008 THE SAME TIME THE SUSTAINABILITY 4875 03:32:49,008 --> 03:32:53,146 AND HOW TO MAINTAIN THAT OVER 4876 03:32:53,146 --> 03:32:54,147 THE YEARS AND THAT'S IMPORTANT 4877 03:32:54,147 --> 03:32:58,251 BECAUSE YOU DON'T WANT THIS TO 4878 03:32:58,251 --> 03:33:00,153 JUST BE A BLIP ON THE RADAR 4879 03:33:00,153 --> 03:33:01,454 SCREEN AND THEN GONE. 4880 03:33:01,454 --> 03:33:06,192 IT'S SCIENCE THAT NEEDS TO 4881 03:33:06,192 --> 03:33:07,961 CONTINUE ON AND ON. 4882 03:33:07,961 --> 03:33:11,231 I TRIED TO GIVE A PERSPECTIVE A 4883 03:33:11,231 --> 03:33:12,165 LITTLE BIT FROM WHERE WE ARE 4884 03:33:12,165 --> 03:33:14,634 WITH THE COPD AREA BUT I THINK 4885 03:33:14,634 --> 03:33:16,502 IT HAS RELEVANCE TO ALL THE 4886 03:33:16,502 --> 03:33:19,706 POINTS AND QUESTIONS THAT WERE 4887 03:33:19,706 --> 03:33:21,374 ASKED PREVIOUSLY TO THE OTHER 4888 03:33:21,374 --> 03:33:27,480 SPEAKERS AND PANELISTS. 4889 03:33:27,480 --> 03:33:29,315 >> I WANT DO MAKE SURE ALL OUR 4890 03:33:29,315 --> 03:33:30,350 COMMITTEES HAVE IN AEQUITABLE 4891 03:33:30,350 --> 03:33:31,217 OPPORTUNITIES TO ASK QUESTIONS. 4892 03:33:31,217 --> 03:33:34,387 I'LL TURN IT OVER TO THE PATIENT 4893 03:33:34,387 --> 03:33:44,664 TOOL COMMITTEE. 4894 03:33:48,768 --> 03:33:50,203 >> THE COMMITTEE HAS DISCUSSED 4895 03:33:50,203 --> 03:33:52,839 WAYS TO QUANTIFY THE PEOPLE IN 4896 03:33:52,839 --> 03:33:53,740 THE LYMPHATIC DISEASE. 4897 03:33:53,740 --> 03:33:59,312 HOW DID YOU GET TO THE 17 4898 03:33:59,312 --> 03:34:03,917 MILLION DIAGNOSED. 4899 03:34:03,917 --> 03:34:04,918 ICD10 CODES OR OTHER MEANS OF 4900 03:34:04,918 --> 03:34:06,519 GETTING TO THAT NUMBER? 4901 03:34:06,519 --> 03:34:10,223 >> THE SHORT ANSWER IS THAT 4902 03:34:10,223 --> 03:34:14,127 THESE NUMBERS ARE DEVELOPED BY 4903 03:34:14,127 --> 03:34:14,294 CDC. 4904 03:34:14,294 --> 03:34:16,429 THEY USE THEIR OWN METHODOLOGY 4905 03:34:16,429 --> 03:34:18,131 AND TRACKING SYSTEM. 4906 03:34:18,131 --> 03:34:21,501 THEY HAVE A COMPLETELY 4907 03:34:21,501 --> 03:34:22,201 SOPHISTICATED WAY TO REPORT ALL 4908 03:34:22,201 --> 03:34:29,742 DISEASE ENTITIES AND PRODUCE 4909 03:34:29,742 --> 03:34:33,346 THAT AND PUT OUT PUBLICATIONS 4910 03:34:33,346 --> 03:34:34,580 WITH MORTALITY AND MORBIDITY 4911 03:34:34,580 --> 03:34:35,748 DATA. 4912 03:34:35,748 --> 03:34:39,185 WE RELY ENTIRELY ON CDC TO MAKE 4913 03:34:39,185 --> 03:34:41,754 SURE THE ESTIMATES ARE 4914 03:34:41,754 --> 03:34:42,455 APPROPRIATE AND REPRESENTATIVE 4915 03:34:42,455 --> 03:34:43,923 ON THE NATIONAL SCALE. 4916 03:34:43,923 --> 03:34:46,960 IS THAT ABOUT RIGHT NOW? 4917 03:34:46,960 --> 03:34:48,194 >> THAT'S CORRECT. 4918 03:34:48,194 --> 03:34:49,629 SOMETIMES WE BREAK IT DOWN A 4919 03:34:49,629 --> 03:34:50,496 LITTLE BIT FURTHER. 4920 03:34:50,496 --> 03:34:52,699 WE HAVE PREVALENCE DATA BUT IT'S 4921 03:34:52,699 --> 03:34:55,201 ALSO FROM THE BEHAVIORAL RISK 4922 03:34:55,201 --> 03:34:57,804 FACTOR AND CDC PUT OUT AND THAT 4923 03:34:57,804 --> 03:34:59,238 WAY WE CAN MESSAGE AND X NUMBER 4924 03:34:59,238 --> 03:35:01,140 OF PEOPLE IN YOUR STATE HAVE 4925 03:35:01,140 --> 03:35:01,641 COPD. 4926 03:35:01,641 --> 03:35:03,309 WE ENCOURAGE PEOPLE THEN IN OUR 4927 03:35:03,309 --> 03:35:05,244 PARTNER NETWORKS TO TAKE THAT TO 4928 03:35:05,244 --> 03:35:07,113 LOCAL LEGISLATORS AND MEDIA TO 4929 03:35:07,113 --> 03:35:09,015 HELP BUILD AWARENESS AROUND WHAT 4930 03:35:09,015 --> 03:35:10,750 THE PREVALENCE OF THE DISEASE IS 4931 03:35:10,750 --> 03:35:13,353 IN THEIR STATE AND WHY PEOPLE 4932 03:35:13,353 --> 03:35:14,187 SHOULD PAY ATTENTION. 4933 03:35:14,187 --> 03:35:17,924 IT'S ALL CDC'S DATA BECAUSE 4934 03:35:17,924 --> 03:35:19,158 THAT'S THEIR ROLE. 4935 03:35:19,158 --> 03:35:20,059 >> THANK YOU. 4936 03:35:20,059 --> 03:35:23,229 THE NEXT QUESTION IS FOR ALL THE 4937 03:35:23,229 --> 03:35:23,696 STAKEHOLDERS. 4938 03:35:23,696 --> 03:35:25,098 HOW DO YOU DECIDE WHAT 4939 03:35:25,098 --> 03:35:26,432 INFORMATION TO DISSEMINATE TO 4940 03:35:26,432 --> 03:35:29,502 PATIENTS AND WHAT HAVE YOU FUND 4941 03:35:29,502 --> 03:35:31,938 TO BE THE BEST MEDIUM TO DO 4942 03:35:31,938 --> 03:35:32,138 THAT? 4943 03:35:32,138 --> 03:35:33,139 WHAT HAS BEEN MOST EFFECTIVE 4944 03:35:33,139 --> 03:35:39,078 MEDIUM TO USE? 4945 03:35:39,078 --> 03:35:41,347 >> I DON'T KNOW IF YOU'LL WANT 4946 03:35:41,347 --> 03:35:43,049 TO HEAR FROM THE COPD SIDE BUT 4947 03:35:43,049 --> 03:35:46,185 WE HAVE LOOKED INTO THIS 4948 03:35:46,185 --> 03:35:46,486 EXTENSIVELY. 4949 03:35:46,486 --> 03:35:49,022 MAYBE TOUCH ON HOW WE NOT ONLY 4950 03:35:49,022 --> 03:35:50,189 CAPTURED WHAT HEALTH EDUCATION 4951 03:35:50,189 --> 03:35:52,091 MATERIALS GO OUT BUT HOW WE 4952 03:35:52,091 --> 03:35:53,559 DISTRIBUTE THROUGHOUT THE 4953 03:35:53,559 --> 03:35:56,763 NETWORK WE CREATED WITHIN NHLBI 4954 03:35:56,763 --> 03:35:57,864 TO DISSEMINATE THAT INFORMATION? 4955 03:35:57,864 --> 03:36:01,701 YOU MAY WANT TO QUICKLY LET THEM 4956 03:36:01,701 --> 03:36:05,571 KNOW HOW THAT IS WORK. 4957 03:36:05,571 --> 03:36:08,341 >> WE HAVE A NATIONAL LUNG 4958 03:36:08,341 --> 03:36:09,942 HEALTH EDUCATION PROGRAM WE USE 4959 03:36:09,942 --> 03:36:11,110 FOR DIFFERENT COMMUNITIES. 4960 03:36:11,110 --> 03:36:13,780 WE HAVE A LARGE OUTREACH ARM AND 4961 03:36:13,780 --> 03:36:15,381 EDUCATION WE'RE DOING AND IF 4962 03:36:15,381 --> 03:36:16,983 YOU'RE ASKING THE BEST WAY, I 4963 03:36:16,983 --> 03:36:19,986 CAN'T SAY THERE IS ONE BEST WAY. 4964 03:36:19,986 --> 03:36:20,987 WE ALWAYS UTILIZE THE SURROUND 4965 03:36:20,987 --> 03:36:22,055 SOUND APPROACH. 4966 03:36:22,055 --> 03:36:24,323 IT DEPENDS ON THE COMMUNITY 4967 03:36:24,323 --> 03:36:27,193 YOU'RE TRYING TO REACH. 4968 03:36:27,193 --> 03:36:30,496 THE FACT SHEET AND SOMETIMES 4969 03:36:30,496 --> 03:36:32,999 PEOPLE WANT THEM IN DOCTOR'S 4970 03:36:32,999 --> 03:36:35,001 OFFICE OR RADIO ADS, SOCIAL 4971 03:36:35,001 --> 03:36:36,502 MEDIA, WEBINARS. 4972 03:36:36,502 --> 03:36:37,804 I DON'T THINK THERE'S A ONE SIZE 4973 03:36:37,804 --> 03:36:39,972 FITS ALL APPROACH. 4974 03:36:39,972 --> 03:36:41,741 IT'S THE GOAL OF WHAT YOU'RE 4975 03:36:41,741 --> 03:36:44,010 TRYING TO DO WILL DICTATE HOW 4976 03:36:44,010 --> 03:36:45,845 YOU DO IT AND WHO TO GET 4977 03:36:45,845 --> 03:36:50,216 INVOLVED AND WE HAVE OUR BRIEF 4978 03:36:50,216 --> 03:36:52,118 BETTER NETWORK A PARTNERSHIP 4979 03:36:52,118 --> 03:36:54,587 AROUND THE COUNTRY WE COORDINATE 4980 03:36:54,587 --> 03:36:56,089 TO HELP FACILITATE DIALOGUE 4981 03:36:56,089 --> 03:36:57,390 ABOUT COPD AND LUNG CONDITIONS 4982 03:36:57,390 --> 03:36:59,525 AND TRY TO FIND OUT FROM 4983 03:36:59,525 --> 03:37:01,094 PARTNERS THE RESOURCES YOU'RE 4984 03:37:01,094 --> 03:37:02,195 CREATING AND KEY PUBLIC HEALTH 4985 03:37:02,195 --> 03:37:03,930 ISSUES AND WHAT ARE YOU DOING. 4986 03:37:03,930 --> 03:37:04,864 LET US KNOW TO SHARE THAT WITH 4987 03:37:04,864 --> 03:37:08,067 THE PARTNERS TRYING TO AVOID 4988 03:37:08,067 --> 03:37:08,801 DUPLICATION OF EFFORTS AND 4989 03:37:08,801 --> 03:37:09,602 SHARING OF INFORMATION AND 4990 03:37:09,602 --> 03:37:09,869 RESOURCES. 4991 03:37:09,869 --> 03:37:12,271 WE TALKED TO OUR PARTNERS 4992 03:37:12,271 --> 03:37:13,773 REGULARLY AND HAVE A LIST SERVE 4993 03:37:13,773 --> 03:37:16,676 AND ON SOCIAL MEDIA AND 4994 03:37:16,676 --> 03:37:16,976 EVERYTHING. 4995 03:37:16,976 --> 03:37:18,678 IT INCLUDES DIALING THAT NEEDS 4996 03:37:18,678 --> 03:37:20,346 TO HAPPEN AND MAKE SURE YOU HAVE 4997 03:37:20,346 --> 03:37:21,747 THE CONVERSATIONS FREQUENTLY TO 4998 03:37:21,747 --> 03:37:23,516 FIGURE OUT THE PRIORITIES AND 4999 03:37:23,516 --> 03:37:24,117 WHAT'S THE INFORMATION THAT'S 5000 03:37:24,117 --> 03:37:29,922 NEEDED. 5001 03:37:29,922 --> 03:37:35,194 >> QUICKLY TO ECHO AND REINFORCE 5002 03:37:35,194 --> 03:37:36,295 EMPHATICALLY THERE'S NO ONE 5003 03:37:36,295 --> 03:37:40,032 RIGHT WAY AND IT'S AUDIENCE 5004 03:37:40,032 --> 03:37:40,433 DEPENDENT. 5005 03:37:40,433 --> 03:37:42,135 ONE OF THE THINGS THE COLLECTION 5006 03:37:42,135 --> 03:37:43,669 OF THINGS PCORI HAS DONE IS 5007 03:37:43,669 --> 03:37:47,773 RECEIVE ACTIVITIES AND TO PUT 5008 03:37:47,773 --> 03:37:50,776 FUNDING AS WELL INTO THOSE SO IT 5009 03:37:50,776 --> 03:37:52,578 IS YES, THERE'S DISSEMINATION 5010 03:37:52,578 --> 03:37:54,213 AND PROMOTION OF AWARENESS WE 5011 03:37:54,213 --> 03:37:59,752 CAN DO BUT PARTNERING WITH 5012 03:37:59,752 --> 03:38:02,021 COMMUNITY ORGANIZATIONS TO BUILD 5013 03:38:02,021 --> 03:38:04,824 DISSEMINATION TOOLS AND UTILIZE 5014 03:38:04,824 --> 03:38:05,892 THOSE NETWORKS THAT THEY HAVE TO 5015 03:38:05,892 --> 03:38:09,228 GET FINDINGS OUT TO THEIR 5016 03:38:09,228 --> 03:38:09,595 ORGANIZATIONS. 5017 03:38:09,595 --> 03:38:12,465 WE HAVE THE ENGAGEMENT AWARDS TO 5018 03:38:12,465 --> 03:38:13,533 PROVIDE FUNDS FOR DIFFERENT 5019 03:38:13,533 --> 03:38:15,968 COMMUNITIES TO DO DISSEMINATION 5020 03:38:15,968 --> 03:38:17,370 AND BUILD TOOLS THAT ARE THEN 5021 03:38:17,370 --> 03:38:19,005 AVAILABLE TO THE ORGANIZATIONS, 5022 03:38:19,005 --> 03:38:19,539 ETCETERA. 5023 03:38:19,539 --> 03:38:21,541 AND I THINK I'LL HIT ON AGAIN 5024 03:38:21,541 --> 03:38:22,742 THERE ARE THINGS WE NEED TO 5025 03:38:22,742 --> 03:38:25,778 LEARN ABOUT HOW TO DO THIS 5026 03:38:25,778 --> 03:38:28,881 BETTER AND SO IT'S THE PRACTICE 5027 03:38:28,881 --> 03:38:30,216 AND THEN ALSO THE LEARNING THAT 5028 03:38:30,216 --> 03:38:33,419 NEEDS TO GO ON. 5029 03:38:33,419 --> 03:38:36,055 WE HAVE SOME MORE CER RELATED 5030 03:38:36,055 --> 03:38:37,890 ACTIVITIES AROUND SCIENCE OF 5031 03:38:37,890 --> 03:38:39,792 ENGAGEMENT AND AROUND 5032 03:38:39,792 --> 03:38:41,694 COMMUNICATION IN TERMS OF 5033 03:38:41,694 --> 03:38:42,361 UNDERSTANDING WHAT'SING ABOUT TO 5034 03:38:42,361 --> 03:38:43,396 BE MEANINGFUL AND HOW TO 5035 03:38:43,396 --> 03:38:45,131 COMMUNICATE WITH DIFFERENT 5036 03:38:45,131 --> 03:38:46,199 AUDIENCES AND PARTNER WITH 5037 03:38:46,199 --> 03:38:49,735 DIFFERENT AUDIENCES AND AGAIN 5038 03:38:49,735 --> 03:38:51,237 CAPACITY THROUGH HSII LEARNING 5039 03:38:51,237 --> 03:38:53,239 HOW TO SCALE AND GET THIS OUT 5040 03:38:53,239 --> 03:38:56,075 AND WORKING WITH THE PARTNERS AT 5041 03:38:56,075 --> 03:38:58,077 THE TABLE FROM CONCEPT TO 5042 03:38:58,077 --> 03:38:58,778 IMPLEMENTATION TO UNDERSTAND 5043 03:38:58,778 --> 03:39:00,980 WHAT THEY NEED UP FRONT SO IT'S 5044 03:39:00,980 --> 03:39:03,149 BUILT AND THEN TO MAKE SURE IT'S 5045 03:39:03,149 --> 03:39:04,850 SUCCESSFULLY TRANSLATED OUT TO 5046 03:39:04,850 --> 03:39:05,418 THE RIGHT GROUPS. 5047 03:39:05,418 --> 03:39:08,888 >> I WANT TO REITERATE -- YOU 5048 03:39:08,888 --> 03:39:11,257 MADE A FEW IMPORTANT POINTS. 5049 03:39:11,257 --> 03:39:13,492 ONE IS DON'T FINISH A PROJECT 5050 03:39:13,492 --> 03:39:16,762 AND THEN GO TO PEOPLE AND ASK 5051 03:39:16,762 --> 03:39:18,097 THEM TO DISSEMINATE THE RESULTS. 5052 03:39:18,097 --> 03:39:22,034 INVOLVE THEM FROM THE BEGINNING 5053 03:39:22,034 --> 03:39:23,970 BECAUSE THEN THEY'LL BE INVESTED 5054 03:39:23,970 --> 03:39:25,538 AND COMMUNICATE AS THEY'RE 5055 03:39:25,538 --> 03:39:26,772 RELEVANT TO THEIR COMMUNITIES. 5056 03:39:26,772 --> 03:39:28,941 SECOND IS BUILD ON OTHER 5057 03:39:28,941 --> 03:39:29,842 PEOPLE'S PLATFORMS. 5058 03:39:29,842 --> 03:39:34,213 DON'T TRY TO CREATE A NEW 5059 03:39:34,213 --> 03:39:35,181 PLATFORM YOURSELF. 5060 03:39:35,181 --> 03:39:37,216 THAT MEANS ARE YOU GOING TO 5061 03:39:37,216 --> 03:39:41,721 DEVELOP THE MOST WATCHED TIKTOK 5062 03:39:41,721 --> 03:39:44,323 OR INSTAGRAM CHANNEL THAT 5063 03:39:44,323 --> 03:39:45,224 EXISTS? 5064 03:39:45,224 --> 03:39:47,426 NO, PROBABLY NOT. 5065 03:39:47,426 --> 03:39:49,095 UTILIZE EXISTING NETWORKS THAT 5066 03:39:49,095 --> 03:39:50,730 MIGHT CARE ABOUT WHAT YOU'RE 5067 03:39:50,730 --> 03:39:50,930 DOING. 5068 03:39:50,930 --> 03:39:56,202 AND THIS IS A SEPARATE ONE FROM 5069 03:39:56,202 --> 03:39:58,237 MY OLD DAYS FROM MY PATIENT 5070 03:39:58,237 --> 03:40:00,940 ADVOCACY HAT IS ABOUT THE EGO 5071 03:40:00,940 --> 03:40:04,377 AROUND PROJECTS AND PROGRAMS. 5072 03:40:04,377 --> 03:40:06,045 WHEN PEOPLE HAVE -- AND WE RUN 5073 03:40:06,045 --> 03:40:08,414 INTO THIS PROBLEM ALL THE TIME. 5074 03:40:08,414 --> 03:40:10,216 WHEN YOU HAVE AN AMAZING 5075 03:40:10,216 --> 03:40:11,751 FINDINGS ALL YOU WANT TO TALK 5076 03:40:11,751 --> 03:40:13,619 ABOUT IS THAT FINDING. 5077 03:40:13,619 --> 03:40:15,721 THAT'S NOT WHAT PATIENTS CARE 5078 03:40:15,721 --> 03:40:15,921 ABOUT. 5079 03:40:15,921 --> 03:40:18,591 THEY CARE ABOUT THAT FINDING IN 5080 03:40:18,591 --> 03:40:21,661 THE CONTEXT OF THEIR CONDITION. 5081 03:40:21,661 --> 03:40:25,464 AND SO YOUR AMAZING FINDING 5082 03:40:25,464 --> 03:40:28,234 MIGHT BE LIKE FIVE MINUTES OF A 5083 03:40:28,234 --> 03:40:29,268 30 MINUTE PODCAST AND THAT 5084 03:40:29,268 --> 03:40:32,004 THOUGH IS WHERE PEOPLE ARE GOING 5085 03:40:32,004 --> 03:40:33,506 TO CARE IF IT'S PUT IN THE 5086 03:40:33,506 --> 03:40:34,373 CONTEXT OF THE INFORMATION THEY 5087 03:40:34,373 --> 03:40:37,843 CARE ABOUT AS A WHOLE. 5088 03:40:37,843 --> 03:40:39,345 THEY WILL LISTEN AND HEAR IT AND 5089 03:40:39,345 --> 03:40:40,046 USE IT. 5090 03:40:40,046 --> 03:40:42,581 BUT IF YOU DO A 30-MINUTE 5091 03:40:42,581 --> 03:40:46,218 PODCAST ON THE SCIENTIFIC 5092 03:40:46,218 --> 03:40:49,288 FINDING, PATIENT, COMMUNITIES, 5093 03:40:49,288 --> 03:40:54,293 WON'T TUNE INTO THAT. 5094 03:40:54,293 --> 03:40:57,096 SO THERE IS AN EGO COMPONENT TO 5095 03:40:57,096 --> 03:41:00,232 TAKE A STEP BACK AND SAY, HOW DO 5096 03:41:00,232 --> 03:41:01,434 YOU NOT PRESENT THE INFORMATION 5097 03:41:01,434 --> 03:41:04,170 HOW YOU WISH IT WAS PRESENTED 5098 03:41:04,170 --> 03:41:05,771 WITHIN POINTS YOU WISH IT WAS 5099 03:41:05,771 --> 03:41:13,079 AND HOW HOW DO YOU LOOK AT THE 5100 03:41:13,079 --> 03:41:13,612 AUDIE 5101 03:41:13,612 --> 03:41:13,879 AUDIENCE. 5102 03:41:13,879 --> 03:41:17,350 >> WE HAVE A COMMUNITY 5103 03:41:17,350 --> 03:41:18,184 SUBCONTRACT AND IT'S NOT A LOT 5104 03:41:18,184 --> 03:41:22,288 OF MONEY BUT OFFER TO NON-PROFIT 5105 03:41:22,288 --> 03:41:28,027 ORGANIZATIONS TO DO INNOVATIVE 5106 03:41:28,027 --> 03:41:29,528 HEALTH EDUCATION PROJECTS AND 5107 03:41:29,528 --> 03:41:31,897 MAP BACK TO TALK ABOUT HOW IT 5108 03:41:31,897 --> 03:41:32,965 FURTHERS IMPLEMENTATION OR A 5109 03:41:32,965 --> 03:41:34,400 NEEDS IN THEIR COMMUNITY AND ARE 5110 03:41:34,400 --> 03:41:36,268 PILOT PROGRAMS OF WHAT WORKS IN 5111 03:41:36,268 --> 03:41:37,370 THAT COMMUNITY AND ONE CASE 5112 03:41:37,370 --> 03:41:39,939 WE'VE BEEN ABLE TO TAKE IT ON A 5113 03:41:39,939 --> 03:41:42,274 NATIONAL LEVEL WAS A CAREGIVER'S 5114 03:41:42,274 --> 03:41:43,275 TOOL KIT OUR ORGANIZATION 5115 03:41:43,275 --> 03:41:46,645 STARTED TO CREATE AND THEN WE 5116 03:41:46,645 --> 03:41:49,482 SAW GREAT RESULTED AND NOW IT'S 5117 03:41:49,482 --> 03:41:52,685 OFFERED AS A GOOD JOINT RESOURCE 5118 03:41:52,685 --> 03:41:53,319 NATIONALLY AVAILABLE. 5119 03:41:53,319 --> 03:41:54,854 IT'S NOT A LOT OF MONEY BUT 5120 03:41:54,854 --> 03:41:55,688 COMMUNITY ORGANIZATIONS CAN DO A 5121 03:41:55,688 --> 03:41:57,990 LOT AND YOU LEARN A LOT ABOUT 5122 03:41:57,990 --> 03:41:58,624 YOUR COMMUNITIES IN DOING THOSE 5123 03:41:58,624 --> 03:42:04,330 THINGS. 5124 03:42:14,340 --> 03:42:16,375 >> WE WERE TALKING ABOUT 5125 03:42:16,375 --> 03:42:17,743 REACHING OUT TO COMMUNITIES NOT 5126 03:42:17,743 --> 03:42:21,080 AS EASILY REACHED OR ENGAGED. 5127 03:42:21,080 --> 03:42:23,482 HOW ARE ORGANIZATIONS 5128 03:42:23,482 --> 03:42:24,383 IDENTIFYING A SUCCESSFUL 5129 03:42:24,383 --> 03:42:24,683 OUTREACH? 5130 03:42:24,683 --> 03:42:27,620 DO WE NEED TO EXPAND ON THAT IN 5131 03:42:27,620 --> 03:42:29,188 PARTICULAR OR ON THE REVERSE 5132 03:42:29,188 --> 03:42:34,193 SIDE IF THERE WERE IDENTIFIERS, 5133 03:42:34,193 --> 03:42:36,562 HOW DO YOU MEASURE THAT? 5134 03:42:36,562 --> 03:42:39,098 >> I THINK IT'S AN AREA WHERE WE 5135 03:42:39,098 --> 03:42:42,201 NEED METRICS AND METRIC 5136 03:42:42,201 --> 03:42:43,436 DEVELOPMENT. 5137 03:42:43,436 --> 03:42:45,137 THINKING ABOUT THIS THE WORK TO 5138 03:42:45,137 --> 03:42:46,705 BE DONE AND THE SCIENTIFIC 5139 03:42:46,705 --> 03:42:48,441 ENGAGEMENT PROGRAM PART OF OUR 5140 03:42:48,441 --> 03:42:50,042 METHODS TO SUPPORT CER IS ABOUT 5141 03:42:50,042 --> 03:42:52,578 THAT IN TERMS OF ENGAGING FOLKS 5142 03:42:52,578 --> 03:42:54,246 AND THAT INCLUDES DISSEMINATION 5143 03:42:54,246 --> 03:42:55,314 ACTIVITY AND UNDERSTANDING 5144 03:42:55,314 --> 03:42:56,816 DIFFERENT COMMUNITY NEEDS AND 5145 03:42:56,816 --> 03:43:01,120 HOW TO PUT TOGETHER MEANINGFUL 5146 03:43:01,120 --> 03:43:01,854 PARTNERSHIPS WITH THOSE 5147 03:43:01,854 --> 03:43:02,188 COMMUNITIES. 5148 03:43:02,188 --> 03:43:05,624 IT'S AN AREA WE NEED TO CONTINUE 5149 03:43:05,624 --> 03:43:08,928 WORKING ON AND WE FOCUS AGAIN 5150 03:43:08,928 --> 03:43:10,896 MORE SO AT THE HIGHER LEVEL 5151 03:43:10,896 --> 03:43:11,964 TRYING TO LOOK FOR WHAT SIGNALS 5152 03:43:11,964 --> 03:43:14,200 ARE THERE AT THE MOMENT WHICH 5153 03:43:14,200 --> 03:43:18,471 ARE MOVING THINGS INTO PRACTICE 5154 03:43:18,471 --> 03:43:22,741 AND SMALLER ACTIVITIES THAT WE 5155 03:43:22,741 --> 03:43:26,011 HAVE THAT CAN GET CLOSER TO THE 5156 03:43:26,011 --> 03:43:28,047 GROUND AND THINK ONE OF THE 5157 03:43:28,047 --> 03:43:30,416 THINGS PCORI TAKES SERIOUSLY IS 5158 03:43:30,416 --> 03:43:31,183 LOOKING ACROSS THE PORTFOLIO AS 5159 03:43:31,183 --> 03:43:32,885 WE HAVE FUNDED PROJECTS LOOKING 5160 03:43:32,885 --> 03:43:34,687 AT DIFFERENT SPACES WHAT ARE 5161 03:43:34,687 --> 03:43:37,089 RELEARNING ACROSS THE BOARD AND 5162 03:43:37,089 --> 03:43:40,192 HOW CAN WE GET THAT OUT AS WELL 5163 03:43:40,192 --> 03:43:41,427 WHETHER TO THE RESEARCH 5164 03:43:41,427 --> 03:43:42,795 COMMUNITY, HEALTH COMMUNITY OR 5165 03:43:42,795 --> 03:43:45,965 DIFFERENT COMMUNITY PARTNERS SO 5166 03:43:45,965 --> 03:43:49,869 THAT IT DOESN'T STAYED BURIED 5167 03:43:49,869 --> 03:43:56,108 WITHIN APPROVALS AND SILOED AS 5168 03:43:56,108 --> 03:43:57,610 SUCCESS STORIES BUT HIGHLIGHTED 5169 03:43:57,610 --> 03:44:00,012 IT. 5170 03:44:00,012 --> 03:44:03,215 >> LOOKING AT WHAT PUBLIC HEALTH 5171 03:44:03,215 --> 03:44:09,822 HAS DONE FROM OUTREACH AND 5172 03:44:09,822 --> 03:44:13,025 MEASUREMENT AND MEASURE IMPACT 5173 03:44:13,025 --> 03:44:14,193 AROUND PRODUCTS AND SALES AND 5174 03:44:14,193 --> 03:44:15,895 RETAIL AND THOSE TYPES OF 5175 03:44:15,895 --> 03:44:16,161 THINGS. 5176 03:44:16,161 --> 03:44:18,597 A LOT OF THE MEASURES THEY USE 5177 03:44:18,597 --> 03:44:22,835 INTERNALLY ARE TRIED AND TRUE 5178 03:44:22,835 --> 03:44:23,235 METRICS. 5179 03:44:23,235 --> 03:44:24,837 SO USING THOSE BECAUSE THE WORK 5180 03:44:24,837 --> 03:44:25,471 HAS ALREADY BEEN DONE IS 5181 03:44:25,471 --> 03:44:30,409 INCREDIBLY HELPFUL. 5182 03:44:30,409 --> 03:44:34,179 >> WE'LL GO TO ALISSA AND 5183 03:44:34,179 --> 03:44:35,381 GUILLERMO AND THEN FROM THE 5184 03:44:35,381 --> 03:44:37,016 IMPERATIVE COMMITTEE. 5185 03:44:37,016 --> 03:44:38,183 >> THE PATIENT TOOL COMMITTEE IS 5186 03:44:38,183 --> 03:44:40,019 INSPIRED BY ACTION. 5187 03:44:40,019 --> 03:44:43,455 COULD THE COPD TEAM SPEAK TO 5188 03:44:43,455 --> 03:44:47,593 WHAT IT MAY TAKE TO FORM AN 5189 03:44:47,593 --> 03:44:49,261 LYMPHATIC ACTION PLAN AND DO YOU 5190 03:44:49,261 --> 03:44:50,396 RECOMMEND WE HAVE ONE. 5191 03:44:50,396 --> 03:44:53,732 >> I'LL TAKE THE FIRST PASS AND 5192 03:44:53,732 --> 03:44:55,467 NEYAL MAY HAVE MORE TO OFFER. 5193 03:44:55,467 --> 03:44:58,203 THE SHORT ANSWER IS THIS IS A 5194 03:44:58,203 --> 03:44:59,471 VERY IMPORTANT EFFORT IF YOU 5195 03:44:59,471 --> 03:45:01,574 WANT TO TRY TO GALVANIZE THE 5196 03:45:01,574 --> 03:45:04,109 COMMUNITY OR TRY TO GET THE 5197 03:45:04,109 --> 03:45:05,411 STAKEHOLDER INPUT OR PUT 5198 03:45:05,411 --> 03:45:07,212 TOGETHER WHAT MIGHT BE CALLED A 5199 03:45:07,212 --> 03:45:09,815 BLUEPRINT ROAD MAP, WHATEVER 5200 03:45:09,815 --> 03:45:11,116 METAPHOR YOU WANT TO USE BUT YOU 5201 03:45:11,116 --> 03:45:13,586 NEED TO START SOMEWHERE TO BRING 5202 03:45:13,586 --> 03:45:16,388 IT ALL TOGETHER IN A WAY THAT 5203 03:45:16,388 --> 03:45:17,756 THE COMMUNITY BUYS INTO IT AND 5204 03:45:17,756 --> 03:45:19,391 THEN YOU FIGURE OUT HOW TO 5205 03:45:19,391 --> 03:45:20,392 IMPLEMENT THAT. 5206 03:45:20,392 --> 03:45:22,528 AND I THINK THIS WAS VERY 5207 03:45:22,528 --> 03:45:25,731 IMPORTANT WAY IN WHICH WE WERE 5208 03:45:25,731 --> 03:45:28,167 ABLE TO SAY WHERE ARE WE IN THE 5209 03:45:28,167 --> 03:45:28,801 DIFFERENT CATEGORIES AND WHERE 5210 03:45:28,801 --> 03:45:30,970 DO WE NEED TO GO. 5211 03:45:30,970 --> 03:45:33,505 AND THEN HOW DO WE GET THERE. 5212 03:45:33,505 --> 03:45:35,474 IT IS A PROCESS. 5213 03:45:35,474 --> 03:45:37,776 IT'S A STEP WISE PROGRESSION BUT 5214 03:45:37,776 --> 03:45:39,244 I THINK IT'S AN IMPORTANT STEP 5215 03:45:39,244 --> 03:45:41,347 OR YOU'RE GOING TO HAVE LOTS OF 5216 03:45:41,347 --> 03:45:42,214 THINGS FLYING IN THE AREA AND 5217 03:45:42,214 --> 03:45:45,918 HOW ARE YOU GOING TO PRIORITIZE, 5218 03:45:45,918 --> 03:45:47,753 HOW ARE YOU GOING TO DETERMINE 5219 03:45:47,753 --> 03:45:49,722 WHERE YOU'RE GOING TO FOCUS 5220 03:45:49,722 --> 03:45:50,689 RESOURCES IF THAT'S AVAILABLE TO 5221 03:45:50,689 --> 03:45:54,059 YOU AND HOW ARE YOU GOING TO 5222 03:45:54,059 --> 03:45:55,227 MAKE THE MOST CHANGE YOU'RE 5223 03:45:55,227 --> 03:45:55,995 LOOKING FOR. 5224 03:45:55,995 --> 03:45:58,564 IT'S ALL ABOUT IMPACT. 5225 03:45:58,564 --> 03:46:00,232 HOW CAN YOU PUT SOME RESOURCES 5226 03:46:00,232 --> 03:46:01,967 TOWARDS THINGS THAT WILL GIVE 5227 03:46:01,967 --> 03:46:03,969 YOU THE GREATEST IMPACT AT LEAST 5228 03:46:03,969 --> 03:46:05,904 WHAT YOU MIGHT THINK MIGHT BE AT 5229 03:46:05,904 --> 03:46:06,639 THIS POINT. 5230 03:46:06,639 --> 03:46:09,975 IN MY VIEW I THINK IT'S 5231 03:46:09,975 --> 03:46:11,777 CRITICALLY IMPORTANT FIRST STEP 5232 03:46:11,777 --> 03:46:14,647 IN BRINGING IT ALL TOGETHER. 5233 03:46:14,647 --> 03:46:17,516 I DON'T KNOW IF YOU WANT TO ADD 5234 03:46:17,516 --> 03:46:18,517 MORE TO THAT, NEYAL. 5235 03:46:18,517 --> 03:46:20,919 >> THINKING WHERE THE HOME 5236 03:46:20,919 --> 03:46:23,522 SHOULD BE IT'S A TOUGH QUESTION 5237 03:46:23,522 --> 03:46:27,326 BECAUSE SOMETIMES PART OF ME 5238 03:46:27,326 --> 03:46:29,495 WISHES THE HOME WAS SOMEWHERE 5239 03:46:29,495 --> 03:46:32,331 ELSE AND WE DON'T OWN IT BUT 5240 03:46:32,331 --> 03:46:34,199 HELPING FACILITATE AND MORE IT 5241 03:46:34,199 --> 03:46:37,169 FORWARD AND A LOT OF IT FALLS ON 5242 03:46:37,169 --> 03:46:38,470 NHLBI'S SHOULDERS TO KEEP IT OUT 5243 03:46:38,470 --> 03:46:39,905 IN THE COMMUNITY AND TOP OF 5244 03:46:39,905 --> 03:46:40,272 MIND. 5245 03:46:40,272 --> 03:46:41,573 IT'S A LOT OF WORK. 5246 03:46:41,573 --> 03:46:43,409 THERE'S THINGS WE CAN DO AS A 5247 03:46:43,409 --> 03:46:44,410 GOVERNMENT AGENCY AND CAN'T DO 5248 03:46:44,410 --> 03:46:48,414 THAT MAY DRIVE THINGS FORWARD. 5249 03:46:48,414 --> 03:46:49,615 THINK ABOUT THE ORGANIZATION 5250 03:46:49,615 --> 03:46:51,483 PULLING IN AND WHAT'S IN IT FOR 5251 03:46:51,483 --> 03:46:52,718 THEM AND WHY SHOULD THEY CARE 5252 03:46:52,718 --> 03:46:54,887 AND HOW TO KEEP IT MOVING 5253 03:46:54,887 --> 03:46:56,989 FORWARD AND IS THIS COMMISSION 5254 03:46:56,989 --> 03:46:58,590 GOING TO SPEARHEAD THAT AND MOVE 5255 03:46:58,590 --> 03:47:02,194 IT ALONG BECAUSE IT NEEDS 5256 03:47:02,194 --> 03:47:03,529 SOMEONE TO SHEPHERD THE EFFORTS. 5257 03:47:03,529 --> 03:47:05,497 IT TAKES A LOT. 5258 03:47:05,497 --> 03:47:06,098 >> THANK YOU SO MUCH. 5259 03:47:06,098 --> 03:47:06,565 FOLLOW-UP QUESTION. 5260 03:47:06,565 --> 03:47:09,268 IF YOU WERE TO DO IT AGAIN, HOW 5261 03:47:09,268 --> 03:47:10,436 WOULD YOU DO IT DIFFERENTLY THIS 5262 03:47:10,436 --> 03:47:12,938 TIME AROUND? 5263 03:47:12,938 --> 03:47:15,207 >> WELL, ONE OF THE THINGS I 5264 03:47:15,207 --> 03:47:16,408 THINK YOU'VE HEARD OVER AND OVER 5265 03:47:16,408 --> 03:47:18,444 AGAIN IS THAT IT'S GREAT TO HAVE 5266 03:47:18,444 --> 03:47:21,313 A PLAN BUT YOU ALSO NEED 5267 03:47:21,313 --> 03:47:24,049 RESOURCES TO IMPLEMENT THE PLAN. 5268 03:47:24,049 --> 03:47:28,387 SO, IT WOULD BE NICE IF WHETHER 5269 03:47:28,387 --> 03:47:30,756 IT COMES THROUGH OUR OWNER 5270 03:47:30,756 --> 03:47:31,323 APPROPRIATIONS PROCESS OR 5271 03:47:31,323 --> 03:47:33,592 WHETHER THERE'S DEDICATED 5272 03:47:33,592 --> 03:47:34,593 RESOURCES COMING IN FROM 5273 03:47:34,593 --> 03:47:37,196 INDUSTRY OR THE PRIVATE SECTOR 5274 03:47:37,196 --> 03:47:39,264 OR WHEREVER IT'S KIND OF WHERE 5275 03:47:39,264 --> 03:47:42,968 THE FNIH CAN HELP THE EFFORT AS 5276 03:47:42,968 --> 03:47:45,437 WELL BUT AGAIN I THINK WE DIDN'T 5277 03:47:45,437 --> 03:47:48,741 GO OUT THERE SAYING WE WANTED 5278 03:47:48,741 --> 03:47:51,443 $20 BILLION TO DO THIS. 5279 03:47:51,443 --> 03:47:53,045 WE DIDN'T GO WITH A BIG ASK. 5280 03:47:53,045 --> 03:47:54,613 WE SAID LET'S TAKE A LOOK AT 5281 03:47:54,613 --> 03:47:57,583 WHERE THE STATE OF THE FIELD IS, 5282 03:47:57,583 --> 03:48:00,119 WHERE DO WE NEED TO GO AND SEE 5283 03:48:00,119 --> 03:48:02,087 IF WE CAN CHIP AWAY AT IT USING 5284 03:48:02,087 --> 03:48:03,622 OUR EXISTING APPROACH. 5285 03:48:03,622 --> 03:48:06,592 I THINK BY AND LARGE I WOULDN'T 5286 03:48:06,592 --> 03:48:09,061 DO MUCH DIFFERENT IF I HAD TO DO 5287 03:48:09,061 --> 03:48:10,496 IT OVER AGAIN OTHER THAN TO SAY 5288 03:48:10,496 --> 03:48:12,731 I WOULD HAVE LIKED A REVENUE 5289 03:48:12,731 --> 03:48:15,501 STREAM THAT WOULD HAVE BEEN ABLE 5290 03:48:15,501 --> 03:48:17,803 TO SUSTAIN IT BEYOND JUST TRYING 5291 03:48:17,803 --> 03:48:19,872 TO UTILIZE WHAT COMES TO US 5292 03:48:19,872 --> 03:48:23,375 THROUGH OUR NORMATIVE PROCESSES 5293 03:48:23,375 --> 03:48:24,610 BECAUSE IT'S COMPETITIVE AND 5294 03:48:24,610 --> 03:48:26,211 THERE'S ONLY SO MUCH WE CAN DO 5295 03:48:26,211 --> 03:48:29,815 AND YOU REALLY COULD USE A 5296 03:48:29,815 --> 03:48:32,484 LITTLE BIT OF HELP TO REALLY 5297 03:48:32,484 --> 03:48:33,185 SHORE IT UP. 5298 03:48:33,185 --> 03:48:34,686 MAYBE THAT WOULD BE THE ONE 5299 03:48:34,686 --> 03:48:37,156 PIECE I WOULD HAVE ADDED. 5300 03:48:37,156 --> 03:48:40,159 I DON'T KNOW NEYAL IF YOU THINK 5301 03:48:40,159 --> 03:48:42,795 THERE'S OTHER THINGS THAT WOULD 5302 03:48:42,795 --> 03:48:43,328 HAVE BEEN DONE DIFFERENT? 5303 03:48:43,328 --> 03:48:45,164 >> LARGELY, THERE'S NOT TOO MANY 5304 03:48:45,164 --> 03:48:45,597 THINGS DIFFERENTLY. 5305 03:48:45,597 --> 03:48:47,800 I THINK THE REVENUE IS IMPORTANT 5306 03:48:47,800 --> 03:48:49,067 BECAUSE I THINK ABOUT THAT 5307 03:48:49,067 --> 03:48:50,202 SUBCONTRACT PROGRAM I MENTIONED. 5308 03:48:50,202 --> 03:48:52,538 IT'S A SMALL AMOUNT AND ONLY 5309 03:48:52,538 --> 03:48:55,274 ABOUT $150,000 A YEAR WHICH IS 5310 03:48:55,274 --> 03:48:56,642 NOT VERY MUCH MONEY BUT HAD WE 5311 03:48:56,642 --> 03:48:58,510 HAD MORE TO DO COMMUNITY-BASED 5312 03:48:58,510 --> 03:48:59,812 INTERVENTIONS I THINK THAT WOULD 5313 03:48:59,812 --> 03:49:01,146 BE FANTASTIC. 5314 03:49:01,146 --> 03:49:03,081 I THINK THE OTHER PIECE TO DO 5315 03:49:03,081 --> 03:49:05,317 OVER AGAIN IS TRY TO FIGURE OUT 5316 03:49:05,317 --> 03:49:08,053 HOW TO HOLD SOME OF THE PARTNERS 5317 03:49:08,053 --> 03:49:10,189 AND STAKEHOLDERS MORE 5318 03:49:10,189 --> 03:49:11,723 ACCOUNTABLE IN TERMS OF TAKING 5319 03:49:11,723 --> 03:49:14,126 OWNERSHIP OVER THE GOALS OR 5320 03:49:14,126 --> 03:49:16,962 OBJECTIVES AND MORE REGULAR 5321 03:49:16,962 --> 03:49:18,197 REPORTING OR MEETINGS AND WHY 5322 03:49:18,197 --> 03:49:19,698 SHOULD AN AGENCY OR SOMEONE 5323 03:49:19,698 --> 03:49:21,733 FACILITATE A CERTAIN GOAL AREA 5324 03:49:21,733 --> 03:49:23,101 BUT I THINK THAT IS A CHALLENGE 5325 03:49:23,101 --> 03:49:25,537 FOR US TO GO AFTER THE POLICY 5326 03:49:25,537 --> 03:49:26,939 AND WE DON'T REALLY DO POLICY OR 5327 03:49:26,939 --> 03:49:29,675 TO THE OTHER PUBLIC HEALTH AREAS 5328 03:49:29,675 --> 03:49:33,946 THAT ARE NOT NECESSARILY UNDER 5329 03:49:33,946 --> 03:49:36,114 OUR PORTFOLIO OR WHAT NHLBI 5330 03:49:36,114 --> 03:49:40,085 SHOULD BE DOING THEM BUT KEEP 5331 03:49:40,085 --> 03:49:41,153 AFTER THEM AND GET ORGANIZATIONS 5332 03:49:41,153 --> 03:49:42,187 TO BE ACCOUNTABLE TO THE ACTION 5333 03:49:42,187 --> 03:49:44,056 PLAN IF YOU DEVELOP ONE THAT'S 5334 03:49:44,056 --> 03:49:45,457 AN IMPORTANT ELEMENT AND REPORT 5335 03:49:45,457 --> 03:49:46,191 OUT ON THEIR OWN PROGRESS TO THE 5336 03:49:46,191 --> 03:49:56,068 LARGER COMMUNITY. 5337 03:49:56,068 --> 03:50:06,612 >> AND NO MATTER WHERE THE HOME 5338 03:50:09,748 --> 03:50:16,121 IS IF YOU ALLOW PEOPLE TO 5339 03:50:16,121 --> 03:50:23,462 SELF-ORGANIZE WITHIN WITH AN 5340 03:50:23,462 --> 03:50:26,198 OVER ARCHING PLAN AND WITH 5341 03:50:26,198 --> 03:50:29,801 SHARED ACCOUNTABILITY, 5342 03:50:29,801 --> 03:50:39,745 WONDERFUL. 5343 03:50:39,745 --> 03:50:41,813 IT WASN'T A MATTER OF FINDING A 5344 03:50:41,813 --> 03:50:43,448 HOME WHICH IS A LITTLE DIFFERENT 5345 03:50:43,448 --> 03:50:44,716 FROM WHAT YOU'RE ADDRESSING 5346 03:50:44,716 --> 03:50:46,051 RIGHT NOW WHICH IS WHERE THE 5347 03:50:46,051 --> 03:50:47,719 HOME MIGHT BE IF THERE WAS SUCH 5348 03:50:47,719 --> 03:50:51,256 A THING AND WHAT WOULD BE THE 5349 03:50:51,256 --> 03:50:52,925 MOST ADVANTAGEOUS PLACE TO PUT 5350 03:50:52,925 --> 03:50:53,792 IT. 5351 03:50:53,792 --> 03:50:57,195 THIS WAS AGAIN TO SET UP OKAY, 5352 03:50:57,195 --> 03:50:59,398 NOW WE KNOW WHERE THE HOME IS 5353 03:50:59,398 --> 03:51:00,465 BUT WE NEED MORE THAN THE HOME 5354 03:51:00,465 --> 03:51:02,200 TO HAVE THE IMPACT WE'RE LOOKING 5355 03:51:02,200 --> 03:51:09,141 FOR AND THEN SET THE GOALPOST 5356 03:51:09,141 --> 03:51:11,610 AND THEN GO FROM THERE I THINK 5357 03:51:11,610 --> 03:51:12,444 WE'RE A LITTLE BIT DIFFERENT 5358 03:51:12,444 --> 03:51:13,312 FROM SOME OF THE THINGS YOU'RE 5359 03:51:13,312 --> 03:51:15,347 ADDRESSING WHICH ARE ALL VERY 5360 03:51:15,347 --> 03:51:16,548 IMPORTANT TO THINK ABOUT UP 5361 03:51:16,548 --> 03:51:17,816 FRONT BUT MAYBE IN A DIFFERENT 5362 03:51:17,816 --> 03:51:19,117 PLACE WHEN IT COMES TO THE HOME 5363 03:51:19,117 --> 03:51:28,627 QUESTION. 5364 03:51:28,627 --> 03:51:33,098 >> IN THE FEEDBACK YOU HAVE THIS 5365 03:51:33,098 --> 03:51:38,437 BUT DIFFERENT TO THE KIDNEY 5366 03:51:38,437 --> 03:51:43,408 PEOPLE ARE FAMILIAR WITH AND 5367 03:51:43,408 --> 03:51:45,410 THERE'S AN ADDITIONAL STEP TO 5368 03:51:45,410 --> 03:51:47,813 EDUCATE PEOPLE WHOEVER WE'RE 5369 03:51:47,813 --> 03:51:49,781 TALKING, DONORS, PRIVATE, BIO 5370 03:51:49,781 --> 03:51:51,016 TECH, ETCETERA. 5371 03:51:51,016 --> 03:51:56,121 THIS IS A MAJOR CHALLENGE 5372 03:51:56,121 --> 03:52:02,627 BECAUSE LEARNING IN FIVE MINUTES 5373 03:52:02,627 --> 03:52:04,563 ABOUT LYMPHATICS. 5374 03:52:04,563 --> 03:52:05,664 MOST PEOPLE ARE NOT FAMILIAR 5375 03:52:05,664 --> 03:52:07,466 WITH THE TOPIC AND SOMETHING WE 5376 03:52:07,466 --> 03:52:08,367 NEED TO REMIND OURSELVES 5377 03:52:08,367 --> 03:52:09,534 WHATEVER WE'RE GOING TO DO WE 5378 03:52:09,534 --> 03:52:12,204 NEED TO INCLUDE THAT ASPECT 5379 03:52:12,204 --> 03:52:14,840 BECAUSE OTHERWISE YOU WILL NOT 5380 03:52:14,840 --> 03:52:16,575 BE ABLE TO SUCCEED IN CONVINCING 5381 03:52:16,575 --> 03:52:17,809 PEOPLE THIS IS A RELEVANT 5382 03:52:17,809 --> 03:52:26,218 ASPECT. 5383 03:52:26,218 --> 03:52:29,755 THERE'S A SMALL NUMBER OF BIO 5384 03:52:29,755 --> 03:52:29,955 TECH. 5385 03:52:29,955 --> 03:52:31,556 WE NEED TO RESPECT THE POINT OF 5386 03:52:31,556 --> 03:52:33,759 VIEW DIFFERENT FROM THE KIDNEY 5387 03:52:33,759 --> 03:52:35,394 AND LUNG AND EVERYBODY WITH THE 5388 03:52:35,394 --> 03:52:37,496 DISEASES AND DISORDERS. 5389 03:52:37,496 --> 03:52:38,830 I THINK THAT'S SOMETHING I WOULD 5390 03:52:38,830 --> 03:52:43,502 LOVE TO HEAR ANY OF YOU OF THE 5391 03:52:43,502 --> 03:52:46,705 OTHER GROUPS TO GIVE US SOME 5392 03:52:46,705 --> 03:52:51,443 ADVICE HOW TO GO AROUND AND TRY 5393 03:52:51,443 --> 03:52:53,478 TO EDUCATE AT EVERY DIFFERENT 5394 03:52:53,478 --> 03:52:53,678 LEVEL. 5395 03:52:53,678 --> 03:52:55,380 WHATEVER WE WANT TO ACCOMPLISH 5396 03:52:55,380 --> 03:52:58,116 WE COULD DO IT BECAUSE WE DON'T 5397 03:52:58,116 --> 03:53:00,719 NEED TO GO THROUGH THE EXTRA 5398 03:53:00,719 --> 03:53:02,220 STEPS EVERY TIME WE'RE GOING TO 5399 03:53:02,220 --> 03:53:07,559 TRY TO DO SOMETHING. 5400 03:53:07,559 --> 03:53:09,194 >> I CAN START A LITTLE BIT 5401 03:53:09,194 --> 03:53:10,562 THERE. 5402 03:53:10,562 --> 03:53:14,032 YOU'D BE SURPRISED HOW FEW 5403 03:53:14,032 --> 03:53:15,434 PEOPLE KNOW WHAT COPD IS. 5404 03:53:15,434 --> 03:53:19,504 >> THEY KNOW IT'S THE LUNG. 5405 03:53:19,504 --> 03:53:22,207 >> ONE THING WE DID WHEN I 5406 03:53:22,207 --> 03:53:25,243 STARTED AT NHLBI WE DID NATIONAL 5407 03:53:25,243 --> 03:53:26,111 SURVEYS OF THE HEALTH CARE 5408 03:53:26,111 --> 03:53:27,379 PROVIDER COMMUNITY AND GENERAL 5409 03:53:27,379 --> 03:53:30,215 PUBLIC 18 AND OLDER TO 5410 03:53:30,215 --> 03:53:33,552 ACKNOWLEDGE ATTITUDES AND 5411 03:53:33,552 --> 03:53:35,454 PRACTICE AND CAN THEY RECOGNIZE 5412 03:53:35,454 --> 03:53:37,255 SYMPTOMS AND ASKING QUESTIONS 5413 03:53:37,255 --> 03:53:39,891 AND USED THAT DATA IN TERMS OF 5414 03:53:39,891 --> 03:53:41,827 WHERE TO PUT ENERGY AND 5415 03:53:41,827 --> 03:53:44,262 RESOURCES AND WHAT ARE NEEDS OF 5416 03:53:44,262 --> 03:53:51,837 DIFFERENT POPULATIONS AND FACED 5417 03:53:51,837 --> 03:53:52,904 KNOWLEDGE GAPS AND WHAT WE TRIED 5418 03:53:52,904 --> 03:53:53,605 TO ADDRESS. 5419 03:53:53,605 --> 03:53:55,640 >> IT'S IMPORTANT BECAUSE NO 5420 03:53:55,640 --> 03:53:58,210 MATTER WHAT YOU THINK A DISEASE 5421 03:53:58,210 --> 03:54:00,445 THAT KILLS THAT MANY PEOPLE 5422 03:54:00,445 --> 03:54:02,180 EVERYBODY WOULD BE AWARE AND WE 5423 03:54:02,180 --> 03:54:05,117 WERE SHOCKED TO SEE HOW LOW THE 5424 03:54:05,117 --> 03:54:06,151 AWARENESS LEVELS WAS. 5425 03:54:06,151 --> 03:54:07,552 WE'VE BEEN CHIPPING AWAY FOR A 5426 03:54:07,552 --> 03:54:10,021 WHILE AND WE'RE GETTING THERE. 5427 03:54:10,021 --> 03:54:11,957 THIS IS SOMETHING OUR INDUSTRY 5428 03:54:11,957 --> 03:54:13,992 PARTNERS HAVE ALSO HELPED WITH 5429 03:54:13,992 --> 03:54:15,727 THOUGH FROM A DIFFERENT 5430 03:54:15,727 --> 03:54:17,829 PERSPECTIVE DEVELOPING 5431 03:54:17,829 --> 03:54:22,200 MEDICATIONS AND SUCH AND THAT'S 5432 03:54:22,200 --> 03:54:28,473 IMPORTANT AND THEY ARE RAISING 5433 03:54:28,473 --> 03:54:30,242 AWARENESS BUT IN THE LYMPHATICS 5434 03:54:30,242 --> 03:54:32,344 AREA YOU DO HAVE A PRETTY STEEP 5435 03:54:32,344 --> 03:54:32,811 HILL TO CLIMB. 5436 03:54:32,811 --> 03:54:33,912 IT'S PROBABLY GOING TO BE A 5437 03:54:33,912 --> 03:54:38,850 TOUGH ONE AND NEED TO LOOK AT 5438 03:54:38,850 --> 03:54:41,186 VARIES WAYS IN WHICH GROUPS HAVE 5439 03:54:41,186 --> 03:54:42,888 DONE THIS WHETHER WELL KNOWN 5440 03:54:42,888 --> 03:54:46,191 HEART, LUNG AND KIDNEY OR ONES 5441 03:54:46,191 --> 03:54:48,527 MORE ORPHAN OR RARE AND SEE HOW 5442 03:54:48,527 --> 03:54:50,962 ONE MIGHT RAISE AWARENESS. 5443 03:54:50,962 --> 03:54:52,364 CYSTIC FIBROSIS IS ANOTHER AREA 5444 03:54:52,364 --> 03:54:55,066 WITHIN OUR PURVIEW. 5445 03:54:55,066 --> 03:55:00,839 THEY'VE DONE A MAGNIFICENT JOB 5446 03:55:00,839 --> 03:55:01,540 RAISING AWARENESS. 5447 03:55:01,540 --> 03:55:03,241 IT'S NOT LYMPHEDEMA. 5448 03:55:03,241 --> 03:55:05,143 YOU'RE TALKING MORE BROADLY. 5449 03:55:05,143 --> 03:55:06,011 YOU HAVE A CHALLENGE TO MAKE 5450 03:55:06,011 --> 03:55:08,246 SURE YOU DO A PUBLIC AWARENESS 5451 03:55:08,246 --> 03:55:11,116 EFFORT TO BRING IT MORE TO THE 5452 03:55:11,116 --> 03:55:13,118 PUBLIC IN TERMS OF THE 5453 03:55:13,118 --> 03:55:14,119 IMPORTANCE OF LYMPHATICS AND 5454 03:55:14,119 --> 03:55:16,354 BEYOND THE THING THEY MAY BE 5455 03:55:16,354 --> 03:55:20,492 FAMILIAR WITH AND MAYBE NOT BE 5456 03:55:20,492 --> 03:55:23,862 THAT FAMILIAR WITH LIMB FA DE 5457 03:55:23,862 --> 03:55:27,365 DEMOO -- LYMPHEDEMA AND GETS 5458 03:55:27,365 --> 03:55:30,535 ADDRESSED YEAR AFTER YEAR. 5459 03:55:30,535 --> 03:55:32,337 IT WILL NEVER GET TO THE POINT 5460 03:55:32,337 --> 03:55:34,573 WHERE EVERYBODY WILL HAVE IT 5461 03:55:34,573 --> 03:55:35,840 FALL OFF THEIR TONGUE LIKE THE 5462 03:55:35,840 --> 03:55:36,541 OTHER THINGS THAT EVERYBODY 5463 03:55:36,541 --> 03:55:40,812 KNOWS ABOUT EVERY DAY. 5464 03:55:40,812 --> 03:55:43,648 >> I COME FROM A GENETIC AND 5465 03:55:43,648 --> 03:55:47,485 RARE DISEASE WORLD FOR MOST OF 5466 03:55:47,485 --> 03:55:49,921 MY CAREER. 5467 03:55:49,921 --> 03:55:51,723 IT'S WORK WITH THE PATIENT 5468 03:55:51,723 --> 03:55:53,058 COMMUNITIES AN UMBRELLA APPROACH 5469 03:55:53,058 --> 03:55:55,660 WHERE POSSIBLE IS GREAT. 5470 03:55:55,660 --> 03:55:58,196 IT'S IDENTIFYING FOUNDATIONS WHO 5471 03:55:58,196 --> 03:56:00,465 MIGHT HAVE AN INTEREST IN THE 5472 03:56:00,465 --> 03:56:01,499 AREA AND PROVIDE SUPPORT FOR 5473 03:56:01,499 --> 03:56:07,072 THIS TYPE OF WORK LAURA IS 5474 03:56:07,072 --> 03:56:07,405 TALKING ABOUT. 5475 03:56:07,405 --> 03:56:08,707 SO FREQUENTLY SCIENCE HAS 5476 03:56:08,707 --> 03:56:10,208 FUNDING AND EVERYTHING ELSE IS 5477 03:56:10,208 --> 03:56:13,545 AN EXPECTATION OF PEOPLE DOING 5478 03:56:13,545 --> 03:56:16,014 IT OUT OF THE GOODNESS OF THEIR 5479 03:56:16,014 --> 03:56:19,751 HEARTS AND FREE TIME AND THE 5480 03:56:19,751 --> 03:56:20,852 REALITY IS COMPANIES ARE PUTTING 5481 03:56:20,852 --> 03:56:23,455 THE MOST MONEY INTO MARKETING 5482 03:56:23,455 --> 03:56:25,156 AND EDUCATION BECAUSE THEY KNOW 5483 03:56:25,156 --> 03:56:26,191 THAT'S WHAT DRIVES SALES OF 5484 03:56:26,191 --> 03:56:27,025 THEIR PRODUCTS. 5485 03:56:27,025 --> 03:56:29,828 THAT'S SOMETHING WE DO NOT DO AT 5486 03:56:29,828 --> 03:56:33,698 ALL. 5487 03:56:33,698 --> 03:56:36,167 SO FREQUENTLY THERE'S NO MONEY 5488 03:56:36,167 --> 03:56:36,434 THERE. 5489 03:56:36,434 --> 03:56:40,405 MY FELLOW PANELISTS GIVE LITTLE 5490 03:56:40,405 --> 03:56:43,275 INFORMATION TOE ACQUIRE BECAUSE 5491 03:56:43,275 --> 03:56:44,476 THEY ALL UNDERSTAND THAT AND 5492 03:56:44,476 --> 03:56:45,977 INVEST INTO THOSE ACTIVITIES 5493 03:56:45,977 --> 03:56:51,816 BUDS -- BUT IS IMPORTANT TO 5494 03:56:51,816 --> 03:56:52,584 THINK ABOUT. 5495 03:56:52,584 --> 03:56:53,852 >> I HEARD A LOT ABOUT THE 5496 03:56:53,852 --> 03:56:55,987 COLLABORATIVE CENTERS AND I HAD 5497 03:56:55,987 --> 03:57:00,792 TWO QUESTIONS IN TALKING ABOUT 5498 03:57:00,792 --> 03:57:01,926 SHARING RESOURCES AND WHAT 5499 03:57:01,926 --> 03:57:03,495 RESOURCES ARE SHARED AND IF 5500 03:57:03,495 --> 03:57:06,698 THERE'S A DATA REPOSITORY YOU 5501 03:57:06,698 --> 03:57:10,201 CREATED. 5502 03:57:10,201 --> 03:57:20,612 WHAT DOES IT LOOK LIKE? 5503 03:57:45,170 --> 03:57:46,404 >> IT CAN REACH OUTSIDE THE 5504 03:57:46,404 --> 03:57:47,172 INDIVIDUAL CENTER BUT NATIONALLY 5505 03:57:47,172 --> 03:57:49,541 THAT WOULD BE A DIFFERENT 5506 03:57:49,541 --> 03:57:50,575 APPROACH BUT FROM A RARE DISEASE 5507 03:57:50,575 --> 03:57:52,544 AND PROBABLY DISPERSED DISEASE 5508 03:57:52,544 --> 03:58:02,921 YOU MAY CONSIDER THAT. 5509 03:58:17,168 --> 03:58:19,604 >> WITH SOME OF THE OTHER TO 5510 03:58:19,604 --> 03:58:21,940 YOUR POINT ABOUT LARGE DATA 5511 03:58:21,940 --> 03:58:23,441 NETWORKS WITH INFORMATION FOR 5512 03:58:23,441 --> 03:58:25,643 RARE DISEASE AGAIN ARE THE 5513 03:58:25,643 --> 03:58:27,379 PLACES TO GO TO UTILIZE FOR THE 5514 03:58:27,379 --> 03:58:30,882 RESEARCH THAT THEN COULD BE 5515 03:58:30,882 --> 03:58:32,350 FUNDED FROM THE SPECIFIC 5516 03:58:32,350 --> 03:58:32,851 LYMPHATICS PERSPECTIVE. 5517 03:58:32,851 --> 03:58:35,453 IT MAY NOT BE ALL ABOUT 5518 03:58:35,453 --> 03:58:35,720 CREATION. 5519 03:58:35,720 --> 03:58:36,721 THERE'S THINGS SPECIFIC THAT 5520 03:58:36,721 --> 03:58:37,989 NEED TO BE DONE AND RESOURCES TO 5521 03:58:37,989 --> 03:58:40,392 BEAR BUT I WANTED TO REMIND YOU 5522 03:58:40,392 --> 03:58:41,860 TO LOOK AT WHAT ELSE IS OUT 5523 03:58:41,860 --> 03:58:42,827 THERE AND ARE THERE WAYS TO 5524 03:58:42,827 --> 03:58:53,371 LEVERAGE TO GET THINGS STARTED. 5525 03:58:55,073 --> 03:58:59,544 >> LET'S SAY WE WERE BUILDING A 5526 03:58:59,544 --> 03:58:59,778 CENTER. 5527 03:58:59,778 --> 03:59:01,780 DO YOU THINK WE NEED, WE HAVE TO 5528 03:59:01,780 --> 03:59:05,784 IS IT OPTIONAL TO GET INDUSTRY 5529 03:59:05,784 --> 03:59:09,687 INVOLVED AND HOW DO YOU 5530 03:59:09,687 --> 03:59:10,288 INCENTIVIZE INDUSTRY TO WORK 5531 03:59:10,288 --> 03:59:15,760 WITH US? 5532 03:59:15,760 --> 03:59:19,497 >> IT DEPENDS ON WHERE YOU'RE AT 5533 03:59:19,497 --> 03:59:25,036 IN THE PROCESS. 5534 03:59:25,036 --> 03:59:26,204 COMPANIES ARE NOT GOING TO 5535 03:59:26,204 --> 03:59:34,012 INVEST TIME UNLESS THEY INTEREST 5536 03:59:34,012 --> 03:59:37,248 FINANCIAL INTERESTS SO BUT 5537 03:59:37,248 --> 03:59:38,683 SOMETIMES YOU'D BE SURPRISED 5538 03:59:38,683 --> 03:59:40,285 WHERE THEIR INTEREST LIE. 5539 03:59:40,285 --> 03:59:44,088 WE'VE DONE STAKEHOLDER MAPPING 5540 03:59:44,088 --> 03:59:47,859 AND INTERVIEWS AND SURVEYS 5541 03:59:47,859 --> 03:59:48,560 AROUND INFORMATION AND UNITY 5542 03:59:48,560 --> 03:59:52,397 PORTFOLIO AND WHERE WE WERE 5543 03:59:52,397 --> 03:59:53,798 SEEKING PITCHES AND PRIORITIZED 5544 03:59:53,798 --> 03:59:54,833 PITCHES AND GOT TWO ON GOUT. 5545 03:59:54,833 --> 03:59:56,801 THAT WAS NOT WHAT I WAS 5546 03:59:56,801 --> 03:59:58,636 EXPECTING TO GET PITCHES ON. 5547 03:59:58,636 --> 04:00:01,706 WE HAVE A PROJECT IN 5548 04:00:01,706 --> 04:00:02,540 FUND-RAISING FOR GOUT AND I 5549 04:00:02,540 --> 04:00:06,311 THINK IT'S GOING TO BE FUNDED. 5550 04:00:06,311 --> 04:00:08,346 IT IS IMPORTANT NOT TO ASSUME 5551 04:00:08,346 --> 04:00:09,547 AND TO REACH OUT AND FIND OUT 5552 04:00:09,547 --> 04:00:14,185 WHERE THERE'S INTEREST. 5553 04:00:14,185 --> 04:00:18,223 AND FOR THE MOST PART INDUSTRY 5554 04:00:18,223 --> 04:00:19,757 WILL BE INTERESTED IN EITHER 5555 04:00:19,757 --> 04:00:21,059 SOMETHING THAT WILL CHANGE THE 5556 04:00:21,059 --> 04:00:22,494 LANDSCAPE FOR INVESTMENT IN THAT 5557 04:00:22,494 --> 04:00:25,129 FIELD BY GENERATING LARGE 5558 04:00:25,129 --> 04:00:29,534 AMOUNTS OF DATA THEY WOULD FIND 5559 04:00:29,534 --> 04:00:31,436 USEFUL BY DISEASE OF INTEREST OR 5560 04:00:31,436 --> 04:00:31,970 RELATED DISEASE. 5561 04:00:31,970 --> 04:00:34,939 SOMETIMES YOU CAN MAKE THAT 5562 04:00:34,939 --> 04:00:37,509 ARGUMENT UNDERSTANDING OF A 5563 04:00:37,509 --> 04:00:39,410 MECHANISM OF ACTION FOR ONE 5564 04:00:39,410 --> 04:00:41,513 DISEASE AREA THAT WILL BE 5565 04:00:41,513 --> 04:00:47,886 RELEVANT TO OTHER DISEASES AS 5566 04:00:47,886 --> 04:00:49,320 WEL 5567 04:00:49,320 --> 04:00:49,521 WELL. 5568 04:00:49,521 --> 04:00:51,556 OR A NARROW PROJECT TO BUILD IN 5569 04:00:51,556 --> 04:00:56,361 SMALLER PROJECTS OF INTEREST. 5570 04:00:56,361 --> 04:00:59,831 INVOLVING COMPANIES AND WE WANT 5571 04:00:59,831 --> 04:01:02,534 DRUGS FOR MANY OF THESE DISEASES 5572 04:01:02,534 --> 04:01:05,837 AND TREATMENTS AND YOU MAY NOT 5573 04:01:05,837 --> 04:01:08,139 START THOUGH BY GETTING INTEREST 5574 04:01:08,139 --> 04:01:10,108 AND THAT'S OKAY. 5575 04:01:10,108 --> 04:01:17,882 AS WE BUILD FOUNDATIONAL WORK IN 5576 04:01:17,882 --> 04:01:19,217 THAT AREA THAT'S PART IN THE 5577 04:01:19,217 --> 04:01:21,953 RARE DISEASE SPACE WHERE YOU 5578 04:01:21,953 --> 04:01:23,855 HAVE TO GO IN THE INTERESTINGAL 5579 04:01:23,855 --> 04:01:26,090 PIPELINE AND THERE'S A ROAD MAP 5580 04:01:26,090 --> 04:01:27,892 OF STEPS TO TRY TO ATTRACT 5581 04:01:27,892 --> 04:01:31,930 INVESTMENT AND INTEREST IN 5582 04:01:31,930 --> 04:01:33,698 REGISTRIES AND FUNDING OF JUNIOR 5583 04:01:33,698 --> 04:01:41,873 RESEARCHERS AND ALL THIS STUFF. 5584 04:01:41,873 --> 04:01:44,943 THAT'S A BIG ANSWER AND I 5585 04:01:44,943 --> 04:01:45,543 REALIZE IT'S A DIFFERENT FOR 5586 04:01:45,543 --> 04:01:48,813 DIFFERENT DIVISIONS. 5587 04:01:48,813 --> 04:01:51,449 >> I DON'T WORK WITH THE 5588 04:01:51,449 --> 04:01:54,852 INDUSTRY IN THE SAME WAY OR HAVE 5589 04:01:54,852 --> 04:01:56,688 AS MUCH EXPOSURE BUT I WOULD SAY 5590 04:01:56,688 --> 04:01:59,724 AGAIN MY EXPERIENCE WOULD BE IT 5591 04:01:59,724 --> 04:02:01,826 IT'S NOT REQUIRED AND MAY BE 5592 04:02:01,826 --> 04:02:03,828 STEP WISE IN TERMS OF A 5593 04:02:03,828 --> 04:02:04,629 DIFFERENT POINTS AND DIFFERENT 5594 04:02:04,629 --> 04:02:08,099 SIZE PROJECTS AND PARTNERSHIPS 5595 04:02:08,099 --> 04:02:09,200 MAY BE RELEVANT EARLY VERSUS 5596 04:02:09,200 --> 04:02:11,803 WHERE WE'D HOPE TO GET TO TO THE 5597 04:02:11,803 --> 04:02:13,071 POINT WE HOPE TO GET TO WHERE 5598 04:02:13,071 --> 04:02:17,875 IT'S CLOSER TO SOMETHING IN 5599 04:02:17,875 --> 04:02:18,476 THEIR FINANCIAL INTEREST AREA. 5600 04:02:18,476 --> 04:02:20,078 SO MAYBE DON'T THINK ABOUT THAT 5601 04:02:20,078 --> 04:02:20,845 LONG-TERM GOAL UP FRONT BUT WHAT 5602 04:02:20,845 --> 04:02:23,615 ARE OTHER WAYS TO PARTNER EARLY 5603 04:02:23,615 --> 04:02:24,415 THAT MAY HAVE INTEREST IN 5604 04:02:24,415 --> 04:02:29,220 BUILDING PARTNERSHIPS AND MAYBE 5605 04:02:29,220 --> 04:02:29,921 IT'S FOUNDATIONS AS MUCH 5606 04:02:29,921 --> 04:02:32,757 INDUSTRY IN THE BEGINNING. 5607 04:02:32,757 --> 04:02:34,125 >> WE'RE QUICKLY RUNNING OUT OF 5608 04:02:34,125 --> 04:02:34,459 TIME. 5609 04:02:34,459 --> 04:02:38,196 I WANT TO GIVE THE OPPORTUNITY 5610 04:02:38,196 --> 04:02:41,399 TO THE THIRD PARTY COVERAGE 5611 04:02:41,399 --> 04:02:42,734 COMMITTEE TO ASK A QUESTION IF 5612 04:02:42,734 --> 04:02:43,201 THERE'S ONE BURNING. 5613 04:02:43,201 --> 04:02:46,204 >> HOW DO YOU TRANSLATE SOME OF 5614 04:02:46,204 --> 04:02:52,043 THE FINDINGS YOU GET WITH PROs 5615 04:02:52,043 --> 04:03:02,587 AND HOW DO YOU GET THE PATIENT 5616 04:03:05,456 --> 04:03:15,900 REPORTED OUTCOMES CLINICALLY? 5617 04:03:16,934 --> 04:03:21,272 >> IT'S A GREAT QUESTION AND 5618 04:03:21,272 --> 04:03:21,906 BASED ON MY EXPERIENCE DOESN'T 5619 04:03:21,906 --> 04:03:32,283 HAVE ONE RIGHT ANSWER. 5620 04:03:33,351 --> 04:03:34,752 STARTING WITH THE PAYERS OR 5621 04:03:34,752 --> 04:03:36,888 THOSE MAKING COVERAGE DECISIONS 5622 04:03:36,888 --> 04:03:39,090 UP FRONT WHAT WILL THEY NEED IN 5623 04:03:39,090 --> 04:03:39,924 A PARTICULAR CASE. 5624 04:03:39,924 --> 04:03:41,659 SOMETIMES IT'S VERY DIFFERENT 5625 04:03:41,659 --> 04:03:43,695 FROM THE WAY OUR RESEARCH 5626 04:03:43,695 --> 04:03:44,529 PIPELINE GENERALLY WORKS. 5627 04:03:44,529 --> 04:03:50,234 SO UNDERSTANDING WHAT TYPES OF 5628 04:03:50,234 --> 04:03:56,307 EVIDENCE AND FACTORS AND IT'S 5629 04:03:56,307 --> 04:03:57,642 NOT A ONE RIGHT ANSWER BUT A 5630 04:03:57,642 --> 04:03:58,476 LARGE NUMBER OF DIFFERENT KINDS 5631 04:03:58,476 --> 04:04:05,249 OF ENTITIES MAKING COVERAGE 5632 04:04:05,249 --> 04:04:05,817 DECISIONS. 5633 04:04:05,817 --> 04:04:13,191 SO 5634 04:04:13,191 --> 04:04:14,192 >> ONE MISSION IS PATIENT 5635 04:04:14,192 --> 04:04:15,560 REPORTED OUTCOMES. 5636 04:04:15,560 --> 04:04:17,595 >> NOT NECESSARILY PATIENT 5637 04:04:17,595 --> 04:04:18,429 REPORTED OUTCOMES. 5638 04:04:18,429 --> 04:04:19,530 WE'RE LOOKING AT LONG-TERM 5639 04:04:19,530 --> 04:04:21,299 HEALTH IMPACTS. 5640 04:04:21,299 --> 04:04:23,501 WE TALKED WITH PAYERS AND HAVE A 5641 04:04:23,501 --> 04:04:25,336 PAYER FORUM AND FREQUENTLY 5642 04:04:25,336 --> 04:04:26,671 TRYING TO UNDERSTAND WHERE WE 5643 04:04:26,671 --> 04:04:29,907 FOCUS IS ON GENERATING EVIDENCE 5644 04:04:29,907 --> 04:04:34,212 AND IT'S HAVING CONVERSATIONS 5645 04:04:34,212 --> 04:04:37,248 WITH THEM TO UNDERSTAND THE 5646 04:04:37,248 --> 04:04:39,817 QUESTIONS THEY'RE ASKING AND 5647 04:04:39,817 --> 04:04:42,186 EVIDENCE NEEDS AND IT'S NOT 5648 04:04:42,186 --> 04:04:52,730 ALWAYS FRANKLY NOT MOST YOU ARE 5649 04:04:58,770 --> 04:05:00,805 LOOKING AND COVERAGE DECISIONS 5650 04:05:00,805 --> 04:05:03,374 AND EMPLOYER GROUPS NOT ONLY 5651 04:05:03,374 --> 04:05:05,309 PURCHASERS OF HEALTH CARE AND 5652 04:05:05,309 --> 04:05:09,814 HAVE A BETTER ANGLE IN WHAT'S 5653 04:05:09,814 --> 04:05:11,582 AFFECTING EMPLOYEE POPULATIONS 5654 04:05:11,582 --> 04:05:14,185 AN LOSING WORK TIME AND SO HAVE 5655 04:05:14,185 --> 04:05:16,687 THE BROADER SPECTRUM AND HAVING 5656 04:05:16,687 --> 04:05:20,358 CONVERSATIONS ON THEIR NEEDS. 5657 04:05:20,358 --> 04:05:22,894 HOW WE APPROACH THINGS AND 5658 04:05:22,894 --> 04:05:28,633 DIALOGUE WITH WHAT'S HELPFUL AND 5659 04:05:28,633 --> 04:05:30,902 WHAT WE HEARD AS A SIMPLIFIED 5660 04:05:30,902 --> 04:05:32,970 STATEMENT FOLLOWED ON SHORT TERM 5661 04:05:32,970 --> 04:05:34,205 PRODUCT AND EVERYDAY INFORMATION 5662 04:05:34,205 --> 04:05:35,807 AS WELL AS LONGER TERM FINDINGS 5663 04:05:35,807 --> 04:05:38,509 THAT COMES THROUGH THE RESEARCH. 5664 04:05:38,509 --> 04:05:40,812 IT'S TAKING A COMPREHENSIVE 5665 04:05:40,812 --> 04:05:41,045 VIEW. 5666 04:05:41,045 --> 04:05:42,647 >> RATHER THAN LONG-TERM 5667 04:05:42,647 --> 04:05:45,316 OUTCOMES OF LYMPHATIC DISEASES 5668 04:05:45,316 --> 04:05:46,217 LOOK AT THE SHORT TERM 5669 04:05:46,217 --> 04:05:50,454 IMPLICATIONS? 5670 04:05:50,454 --> 04:05:51,789 >> AND THE RESEARCH TO GET THERE 5671 04:05:51,789 --> 04:05:54,158 AND MAY BE DIFFERENT RESEARCH IN 5672 04:05:54,158 --> 04:05:58,196 A STANDARD RO1 WITH A FIVE-YEAR 5673 04:05:58,196 --> 04:05:59,764 TIME LINE AND TRANSLATION STEP 5674 04:05:59,764 --> 04:06:05,403 TO GET IT TO CLINIC OR WHAT'S IN 5675 04:06:05,403 --> 04:06:08,406 THE CLINIC WITH RESEARCH TO BE 5676 04:06:08,406 --> 04:06:12,877 DONE ON A TWO-YEAR HORIZON. 5677 04:06:12,877 --> 04:06:14,779 >> IF YOU'RE GOING TO VALIDATE 5678 04:06:14,779 --> 04:06:15,880 AND TEST PATIENT REPORTED 5679 04:06:15,880 --> 04:06:17,014 OUTCOMES IF YOU'RE GOING TO THE 5680 04:06:17,014 --> 04:06:19,684 FDA AND ASK FOR DETERMINATION 5681 04:06:19,684 --> 04:06:22,353 EFFECTIVENESS OF A DRUG, THE END 5682 04:06:22,353 --> 04:06:25,923 DATE HAS A PATHWAY TO USE BUT 5683 04:06:25,923 --> 04:06:28,292 IT'S RIGOROUS SO KEEP THAT END 5684 04:06:28,292 --> 04:06:28,559 MIND. 5685 04:06:28,559 --> 04:06:32,196 >> IT TAKES A LONG TIME THERE'S 5686 04:06:32,196 --> 04:06:34,732 GROWING INTEREST IN DIGITAL 5687 04:06:34,732 --> 04:06:37,134 MEASURES AND DIFFERENT WAYS TO 5688 04:06:37,134 --> 04:06:39,103 COLLECT IN A STANDARDIZED FORMAT 5689 04:06:39,103 --> 04:06:39,503 THAT INFORMATION. 5690 04:06:39,503 --> 04:06:41,372 I THINK THE SPACE WILL CHANGE A 5691 04:06:41,372 --> 04:06:47,545 LOT IN THE NEXT FIVE TO 10 YEARS 5692 04:06:47,545 --> 04:06:53,517 BUT WHEN YOU'RE INVOLVING I HAVE 5693 04:06:53,517 --> 04:06:54,652 FDA INVOLVED IN OUR STEERING 5694 04:06:54,652 --> 04:06:56,053 COMMITTEES AND WORKING GROUPS 5695 04:06:56,053 --> 04:07:01,359 AND THEY ARE VERY HELPFUL AT 5696 04:07:01,359 --> 04:07:03,227 HELPING GET A SENSE OF REALITY. 5697 04:07:03,227 --> 04:07:05,730 >> I CAN DOVETAIL ON THE 5698 04:07:05,730 --> 04:07:07,164 QUESTION THEN, HOW DID YOU 5699 04:07:07,164 --> 04:07:07,999 ENGAGE THE FDA? 5700 04:07:07,999 --> 04:07:09,100 I'M HEARING DIFFERENT PARTS AND 5701 04:07:09,100 --> 04:07:11,168 EARLY ENGAGEMENT AND WHAT'S 5702 04:07:11,168 --> 04:07:12,069 KEEPING THEM THERE AND COMING TO 5703 04:07:12,069 --> 04:07:22,246 THE TABLE. 5704 04:07:34,659 --> 04:07:37,361 IT CREATES AN UMBRELLA AND 5705 04:07:37,361 --> 04:07:39,297 THERE'S POLICIES CLEARLY 5706 04:07:39,297 --> 04:07:44,735 DELINEATED IN THE BIOMARKER 5707 04:07:44,735 --> 04:07:45,036 CONSORTIUM. 5708 04:07:45,036 --> 04:07:51,742 WE ALLOW THEM TO BE INVOLVED IN 5709 04:07:51,742 --> 04:07:56,480 THE EARLY PHASE IT'S NOT SO 5710 04:07:56,480 --> 04:07:59,617 SPECIFIC AND NEEDS TO GO TO A 5711 04:07:59,617 --> 04:08:01,252 HIGHER PERSON IN THE FDA COMMENT 5712 04:08:01,252 --> 04:08:11,963 WHICH I THINK IS HELPFUL AND THE 5713 04:08:11,963 --> 04:08:14,198 EXECUTIVE COMMITTEE FDA SITS IN 5714 04:08:14,198 --> 04:08:17,935 THE APPROVAL PROCESS. 5715 04:08:17,935 --> 04:08:22,173 IT BEFORE ANY PROJECT IS 5716 04:08:22,173 --> 04:08:24,108 APPROVED IN A NON-VOTING 5717 04:08:24,108 --> 04:08:32,516 CAPACITY, FDA SITS ON IT. 5718 04:08:32,516 --> 04:08:33,451 >> VERY LAST QUESTION. 5719 04:08:33,451 --> 04:08:35,753 >> VERY SHORT AND SIMPLE ONE. 5720 04:08:35,753 --> 04:08:36,387 HOW MANY PEOPLE ARE INVOLVED IN 5721 04:08:36,387 --> 04:08:46,697 THE ORGANIZATION? 5722 04:08:53,237 --> 04:09:00,478 >> WE HAVE I THINK ABOUT 350 5723 04:09:00,478 --> 04:09:01,545 STAFF RIGHT NOW FOR ALL PARTS OF 5724 04:09:01,545 --> 04:09:03,881 THE ORGANIZATION. 5725 04:09:03,881 --> 04:09:05,216 WE'RE RUNNING OURS IS ALL 5726 04:09:05,216 --> 04:09:05,449 HEALTH. 5727 04:09:05,449 --> 04:09:07,118 WE'RE NOT FOCUSSED ON ANY 5728 04:09:07,118 --> 04:09:08,686 PARTICULAR DISEASE. 5729 04:09:08,686 --> 04:09:13,391 THAT'S OUR PROGRAMS, ITS OUR 5730 04:09:13,391 --> 04:09:14,792 MONITORING AND OPERATIONS TO RUN 5731 04:09:14,792 --> 04:09:16,460 RESEARCH ADMINISTRATION GROUP 5732 04:09:16,460 --> 04:09:17,294 WHICH IS ONE OF THE LARGER 5733 04:09:17,294 --> 04:09:19,530 GROUPS FOR THE PROCESSING AND 5734 04:09:19,530 --> 04:09:22,199 MANAGEMENT OF THE GRANTS. 5735 04:09:22,199 --> 04:09:23,667 MOST OF THOSE ARE TO THE 5736 04:09:23,667 --> 04:09:26,203 RESEARCH SPACE BUT THERE'S ALSO 5737 04:09:26,203 --> 04:09:29,907 SOME THAT HAVE TO DO WITH MAKING 5738 04:09:29,907 --> 04:09:32,710 AN ORGANIZATION RUN. 5739 04:09:32,710 --> 04:09:37,815 >> AND WE ARE 110 EMPLOYEES. 5740 04:09:37,815 --> 04:09:40,384 A LOT OF OUR -- WE HAVE 122 5741 04:09:40,384 --> 04:09:41,085 ACTIVE PROJECTS. 5742 04:09:41,085 --> 04:09:47,792 A LOT OF OUR PROJECT WE HAVE A 5743 04:09:47,792 --> 04:09:49,894 DECENTRALIZED PROJECT PROGRAM. 5744 04:09:49,894 --> 04:09:55,066 >> THIS IS GREAT. 5745 04:09:55,066 --> 04:09:56,634 THANK YOU. 5746 04:09:56,634 --> 04:10:02,640 OBVIOUSLY NIDDK WITH THAT I'M 5747 04:10:02,640 --> 04:10:03,808 GOING TO ASK ONE IMPORTANT 5748 04:10:03,808 --> 04:10:08,879 QUESTION, LAURA, CAN YOU PLEASE 5749 04:10:08,879 --> 04:10:10,881 HELP US RECRUIT WHOEVER YOU 5750 04:10:10,881 --> 04:10:12,616 THINK WOULD BE THE CORRECT 5751 04:10:12,616 --> 04:10:14,185 PERSON FOR THE PAYER FORUM 5752 04:10:14,185 --> 04:10:15,419 BECAUSE WE WOULD LIKE TO INVITE 5753 04:10:15,419 --> 04:10:22,193 THE PAYER FORUM TO HAVE THIS 5754 04:10:22,193 --> 04:10:23,994 CONVERSATION AS WELL AND ASK 5755 04:10:23,994 --> 04:10:28,899 THEIR OPINION HOW TO BASICALLY 5756 04:10:28,899 --> 04:10:32,536 MAKE THE LYMPHATIC DISEASES 5757 04:10:32,536 --> 04:10:33,871 COVERAGE BETTER. 5758 04:10:33,871 --> 04:10:35,639 SO DO YOU HAVE -- THIS IS NOT 5759 04:10:35,639 --> 04:10:37,508 THE TIME EXPECTING THE ANSWER 5760 04:10:37,508 --> 04:10:43,080 PLEASE THINK ABOUT WHO WOULD BE 5761 04:10:43,080 --> 04:10:46,183 CONTRIBUTING TO OUR DISCUSSION? 5762 04:10:46,183 --> 04:10:47,885 >> I WOULD ALSO ASK THE SAME FOR 5763 04:10:47,885 --> 04:10:48,486 THE DISSEMINATION INFORMATION 5764 04:10:48,486 --> 04:10:57,128 GROUP. 5765 04:10:57,128 --> 04:11:00,698 >> OUR COLLEAGUES HERE NOW THAT 5766 04:11:00,698 --> 04:11:02,032 YOU'RE MORE CLEAR WHAT WE ARE 5767 04:11:02,032 --> 04:11:05,903 LOOKING FOR IF YOU THINK YOU 5768 04:11:05,903 --> 04:11:11,342 SHOULD INVITE ANOTHER GROUP OF 5769 04:11:11,342 --> 04:11:13,544 PEOPLE WE ARE HAPPY BUT 5770 04:11:13,544 --> 04:11:18,182 TARGETING THE PAYERS. 5771 04:11:18,182 --> 04:11:26,023 >> I CAN FOLLOW-UP WITH STAFF 5772 04:11:26,023 --> 04:11:27,324 CONTACTS RELATED TO THINK ABOUT 5773 04:11:27,324 --> 04:11:29,927 HAVING A CONVERSATION WITH THEM 5774 04:11:29,927 --> 04:11:35,099 FIRST AND HOW IT MAKE CONTACTS 5775 04:11:35,099 --> 04:11:36,967 WITHIN THE PAYER COMMUNITY. 5776 04:11:36,967 --> 04:11:39,770 I DON'T KNOW IT TRANSLATES. 5777 04:11:39,770 --> 04:11:42,606 IT'S NOT THAT THEY'RE AN ENTITY 5778 04:11:42,606 --> 04:11:45,176 UNTO THEMSELVES THAT SPEAKS AND 5779 04:11:45,176 --> 04:11:46,477 FOCUSSED ON THE DIALING WITH 5780 04:11:46,477 --> 04:11:47,711 PCORI AND I'M SURE OUR STAFF 5781 04:11:47,711 --> 04:11:48,812 WOULD BE HAPPY TO SPEAK WITH YOU 5782 04:11:48,812 --> 04:11:51,282 AND THINK HOW TO MAKE THE 5783 04:11:51,282 --> 04:11:52,750 CONNECTIONS AND WHAT WE LEARNED 5784 04:11:52,750 --> 04:11:58,189 THROUGH BUILDING THOSE 5785 04:11:58,189 --> 04:11:59,023 CONNECTIONS. 5786 04:11:59,023 --> 04:12:03,093 DEFINITELY FOR DISSEMINATION AND 5787 04:12:03,093 --> 04:12:03,460 IMPLEMENTATION. 5788 04:12:03,460 --> 04:12:05,629 >> YOU CAN SEE WE HAVE A LOT OF 5789 04:12:05,629 --> 04:12:06,197 QUESTIONS. 5790 04:12:06,197 --> 04:12:08,599 NOW YOU ARE MORE FAMILIAR WITH 5791 04:12:08,599 --> 04:12:10,568 WHAT THE QUESTIONS ARE FOR THIS 5792 04:12:10,568 --> 04:12:12,736 COMMISSION AND WE WANT TO KEEP 5793 04:12:12,736 --> 04:12:14,205 OUR CONVERSATION GOING AND WITH 5794 04:12:14,205 --> 04:12:17,841 THAT I'D LIKE TO CLOSE THE OPEN 5795 04:12:17,841 --> 04:12:19,109 SESSION WITH OUR GRATITUDE TO 5796 04:12:19,109 --> 04:12:21,545 EVERYONE WHO JOINED US TODAY AS 5797 04:12:21,545 --> 04:12:25,416 PANELISTS AND ALSO LISTENERS ON 5798 04:12:25,416 --> 04:12:26,317 VIDEOCAST. 5799 04:12:26,317 --> 04:12:28,285 A HUGE THANK YOU TO ALL 5800 04:12:28,285 --> 04:12:29,119 REPRESENTATIVES OF ALL 5801 04:12:29,119 --> 04:12:30,221 GOVERNMENT AGENCIES AN 5802 04:12:30,221 --> 04:12:31,522 ORGANIZATIONS AND TO THE MEMBERS 5803 04:12:31,522 --> 04:12:34,158 AND CO-CHAIRS FOR THE LEADERSHIP 5804 04:12:34,158 --> 04:12:41,932 FOR PROMOTING DISCUSSIONS OF THE 5805 04:12:41,932 --> 04:12:43,367 MEET 5806 04:12:43,367 --> 04:12:43,601 MEETING. 5807 04:12:43,601 --> 04:12:48,572 SHARE INFORMATION YOU THINK IS 5808 04:12:48,572 --> 04:12:59,116 IMPORTANT AND THANK YOU FOR YOUR 5809 04:12:59,583 --> 04:13:01,619 DEDICATION AND THREW FOR THE 5810 04:13:01,619 --> 04:13:05,923 SUPPORT TEAM CONSISTING OF NHLBI 5811 04:13:05,923 --> 04:13:09,226 LEADERSHIP AND STAFF AND WORKING 5812 04:13:09,226 --> 04:13:10,194 GROUP AND COORDINATING COMMITTEE 5813 04:13:10,194 --> 04:13:12,529 AND THE WORKSHOP SUPPORT TEAM 5814 04:13:12,529 --> 04:13:15,933 WHO HAS BEEN INSTRUMENTAL FOR 5815 04:13:15,933 --> 04:13:16,533 THE MEETING. 5816 04:13:16,533 --> 04:13:17,935 THEY'RE THE BEST. 5817 04:13:17,935 --> 04:13:20,004 THEY SAY YES TO EVERYTHING. 5818 04:13:20,004 --> 04:13:25,409 LAST BUT NOT LEAST I WOULD LIKE 5819 04:13:25,409 --> 04:13:35,819 TO RELAY THE RETIREMENT. 5820 04:13:39,757 --> 04:13:43,794 OR CONGRATULATIONS TO YOUR 5821 04:13:43,794 --> 04:13:49,466 SERVICE WE MAY REACH OUT AGAIN. 5822 04:13:49,466 --> 04:13:50,634 WITH THAT, OPEN SESSION 5823 04:13:50,634 --> 04:13:50,901 ADJOURNED. 5824 04:13:50,901 --> 04:13:53,971 THANK YOU, EVERYONE. 5825 04:13:53,971 --> 04:13:54,038