1 00:00:05,572 --> 00:00:06,506 >> GOOD MORNING, EVERYONE. 2 00:00:06,573 --> 00:00:06,873 WELCOME. 3 00:00:06,940 --> 00:00:08,942 THANK YOU FOR JOINING US FOR 4 00:00:09,008 --> 00:00:11,411 THIS SECOND MEETING ON NATIONAL 5 00:00:11,478 --> 00:00:15,615 COMMISSION ON LYMPHATIC 6 00:00:15,682 --> 00:00:16,683 DISEASES. 7 00:00:16,750 --> 00:00:18,551 IT'S A HYBRID MEETING, MAJORITY 8 00:00:18,618 --> 00:00:23,156 OF MEMBERS JOINING US IN 9 00:00:23,223 --> 00:00:25,258 BETHESDA, MARYLAND. 10 00:00:25,325 --> 00:00:27,627 WE WELCOME EVERYONE JOINING 11 00:00:27,694 --> 00:00:29,696 THROUGH THE NIH VIDEOCAST AS 12 00:00:29,763 --> 00:00:30,597 WELL. 13 00:00:30,663 --> 00:00:41,141 I'M SELEN CATANIA, A PROGRAM 14 00:00:41,674 --> 00:00:44,611 CENTER AND LIAISON BETWEEN 15 00:00:44,677 --> 00:00:45,945 LEADERSHIP, REPRESENTING A LARGE 16 00:00:46,012 --> 00:00:47,380 NHLBI SUPPORT GROUP FOR THE WORK 17 00:00:47,447 --> 00:00:48,314 OF THIS COMMISSION. 18 00:00:48,381 --> 00:00:51,084 I'M GOING TO MAKE A FEW 19 00:00:51,151 --> 00:00:55,088 ADMINISTRATIVE ANNOUNCEMENTS 20 00:00:55,155 --> 00:00:56,623 BEFORE WE GET STARTED. 21 00:00:56,689 --> 00:00:58,091 I WANT TO WELCOME PUBLIC 22 00:00:58,158 --> 00:00:59,893 VISITORS AND STAFF, WE'RE 23 00:00:59,959 --> 00:01:02,862 LOOKING FORWARD TO YOUR 24 00:01:02,929 --> 00:01:03,563 FEEDBACK. 25 00:01:03,630 --> 00:01:09,436 I . 26 00:01:09,502 --> 00:01:10,737 LISTENERS ON THE VIDEOCAST CAN 27 00:01:10,804 --> 00:01:12,806 USE THE "LIVE FEEDBACK" BUTTON, 28 00:01:12,872 --> 00:01:14,140 YOUR QUESTIONS AND FEEDBACK WILL 29 00:01:14,207 --> 00:01:19,412 BE RECORDED AND TAKEN INTO THE 30 00:01:19,479 --> 00:01:19,746 CONSIDERATION. 31 00:01:19,813 --> 00:01:24,851 I'M SORRY FOR THE BACKGROUND 32 00:01:24,918 --> 00:01:25,185 NOISE. 33 00:01:25,251 --> 00:01:27,587 TODAY, THE MEETING IS BEING 34 00:01:27,654 --> 00:01:28,955 WEBCAST AND RECORDED, VIDEO WILL 35 00:01:29,022 --> 00:01:30,657 BE ARCHIVED AND WILL BE 36 00:01:30,723 --> 00:01:34,594 AVAILABLE FOR THE PUBLIC AND OUR 37 00:01:34,661 --> 00:01:36,062 NIH COLLEAGUES FOR AN INDEFINITE 38 00:01:36,129 --> 00:01:38,998 AMOUNT OF TIME. 39 00:01:39,065 --> 00:01:41,434 I'M GOING TO GIVE A BRIEF 40 00:01:41,501 --> 00:01:43,470 OVERVIEW OF THE AGENDA, IT WILL 41 00:01:43,536 --> 00:01:46,439 START BY ME REITERATING THE 42 00:01:46,506 --> 00:01:51,377 CHARGE, THEN DR. STANLEY ROCKSON 43 00:01:51,444 --> 00:01:55,315 WITH A BRIEF WELCOME MESSAGE AND 44 00:01:55,381 --> 00:02:01,855 LENORE A JOHNSONS ANNOUNCEMENT. 45 00:02:01,921 --> 00:02:03,223 STEPHANIE DREYER WILL PRESENT 46 00:02:03,289 --> 00:02:06,826 WORK, FOLLOWED BY ALL SIX 47 00:02:06,893 --> 00:02:08,027 COMMITTEES PRESENTING PLANNED 48 00:02:08,094 --> 00:02:08,328 REPORTS. 49 00:02:08,394 --> 00:02:11,965 THIS WILL END OUR OPEN SESSION. 50 00:02:12,031 --> 00:02:14,834 WITHOUT FURTHER DELAY LET'S GET 51 00:02:14,901 --> 00:02:15,134 STARTED. 52 00:02:15,201 --> 00:02:16,102 THE FOLLOWING CHARGE THAT WILL 53 00:02:16,169 --> 00:02:20,106 BE ON THE SCREEN RIGHT NOW WAS 54 00:02:20,173 --> 00:02:22,775 UNANIMOUSLY ACCEPTED IN THE 55 00:02:22,842 --> 00:02:25,745 KICKOFF MEETING ON DECEMBER 11, 56 00:02:25,812 --> 00:02:30,884 2023, YOU CAN SEE ALL THE 57 00:02:30,950 --> 00:02:36,923 DETAILS BUT BRIEFLY NCLD IS 58 00:02:36,990 --> 00:02:38,091 TRANSPARENT, INCLUSIVE AND 59 00:02:38,157 --> 00:02:40,260 ACCESSIBLE TO GATHER INPUT FROM 60 00:02:40,326 --> 00:02:44,430 A WIDE AND DIVERSE SECTOR OF 61 00:02:44,497 --> 00:02:45,365 STAKEHOLDERS TO IDENTIFY GAPS 62 00:02:45,431 --> 00:02:48,601 AND CHALLENGES IN THE FIELD AND 63 00:02:48,668 --> 00:02:49,602 PROVIDE ACTIONABLE PROGRESS 64 00:02:49,669 --> 00:02:51,337 UPDATES AND FINAL REPORT TO THE 65 00:02:51,404 --> 00:02:59,245 NATIONAL HEART LUNG BLOOD 66 00:02:59,312 --> 00:03:00,079 ADVISORY COUNCIL REFLECTING 67 00:03:00,146 --> 00:03:01,447 PERSPECTIVES OF PEOPLE WITH 68 00:03:01,514 --> 00:03:02,715 LYMPHATIC DISEASES. 69 00:03:02,782 --> 00:03:04,484 WITH THAT, IT'S MY GREAT 70 00:03:04,551 --> 00:03:08,721 PLEASURE TO INTRODUCE DR. 71 00:03:08,788 --> 00:03:11,157 STANLEY ROCKSON, ONE OF THE 72 00:03:11,224 --> 00:03:11,424 CO-CHAIRS. 73 00:03:11,491 --> 00:03:13,760 >> SELEN, THANK YOU VERY MUCH. 74 00:03:13,826 --> 00:03:16,930 IT IS A PRIVILEGE TO BE ABLE TO 75 00:03:16,996 --> 00:03:19,432 WELCOME ALL OF OUR 76 00:03:19,499 --> 00:03:22,735 CO-COMMISSIONERS AS WELL AS THE 77 00:03:22,802 --> 00:03:24,404 AUDITORS WHO ARE PARTICIPATING 78 00:03:24,470 --> 00:03:26,673 IN THIS VERY IMPORTANT MEETING 79 00:03:26,739 --> 00:03:28,207 THROUGH THE VIDEOCAST. 80 00:03:28,274 --> 00:03:35,515 WE ARE DELIGHTED TO BE AT THIS 81 00:03:35,582 --> 00:03:36,182 VERY HISTORIC AND GROUNDBREAKING 82 00:03:36,249 --> 00:03:38,751 MOMENT FOR THE PROBLEM OF 83 00:03:38,818 --> 00:03:39,419 LYMPHATIC DISEASE. 84 00:03:39,485 --> 00:03:41,588 I'M QUITE PRIVILEGED TO BE ABLE 85 00:03:41,654 --> 00:03:42,889 TO WELCOME ALL OF YOU. 86 00:03:42,956 --> 00:03:50,330 I WANT TO SAY JUST A WORD OF 87 00:03:50,396 --> 00:03:52,332 THANKS TO SELEN CATANIA AND ELSA 88 00:03:52,398 --> 00:03:55,602 RIVERA WHO WORKED FROM US WITHIN 89 00:03:55,668 --> 00:04:01,107 NHLBI AND TO MY CO-CHAIR, 90 00:04:01,174 --> 00:04:02,909 STEPHANIE DREYER, WHO THIS GROUP 91 00:04:02,976 --> 00:04:04,844 OF INDIVIDUALS HAS WORKED VERY 92 00:04:04,911 --> 00:04:06,846 HARD BEHIND THE SCENES TO TRY 93 00:04:06,913 --> 00:04:08,848 MAKE THIS EVENT HAPPEN TODAY AND 94 00:04:08,915 --> 00:04:11,217 TO CARRY THE WORK FORWARD, I 95 00:04:11,284 --> 00:04:13,786 ALSO WANT TO VERY MUCH 96 00:04:13,853 --> 00:04:19,359 ACKNOWLEDGE AND THANK THE 97 00:04:19,425 --> 00:04:23,896 ASSISTANCE AND COOPATION OF 98 00:04:23,963 --> 00:04:24,497 SERENA GALLIS. 99 00:04:24,564 --> 00:04:26,532 WE'RE GOING TO MOVE TO THE 100 00:04:26,599 --> 00:04:31,471 CONTENT, IT IS MY GREAT PLEASURE 101 00:04:31,537 --> 00:04:35,008 TO INTRODUCE DR. LENORA JOHNSON, 102 00:04:35,074 --> 00:04:37,110 DIRECTOR OF OFFICE SCIENCE 103 00:04:37,176 --> 00:04:38,077 POLICY, EDUCATION AND 104 00:04:38,144 --> 00:04:39,512 COMMUNICATIONS OF NHLBI WHO WILL 105 00:04:39,579 --> 00:04:47,387 TALK ABOUT THE PROCESS OF AN 106 00:04:47,453 --> 00:04:49,155 ANNOUNCEMENT AND PUBLICATION OF 107 00:04:49,222 --> 00:04:49,389 RFI. 108 00:04:49,455 --> 00:04:51,090 >> I'D LIKE TO START BY SAYING 109 00:04:51,157 --> 00:04:53,760 HOW EXCITED IT IS TO BE AROUND 110 00:04:53,826 --> 00:04:55,795 HERE AND AROUND THE TABLE WITH 111 00:04:55,862 --> 00:04:56,729 INCREDIBLE PEOPLE. 112 00:04:56,796 --> 00:04:59,732 I JUST WANT TO GIVE A NOD TO 113 00:04:59,799 --> 00:05:01,968 THOSE THAT WERE INSTRUMENTAL IN 114 00:05:02,035 --> 00:05:04,203 BRINGING US TOGETHER TODAY. 115 00:05:04,270 --> 00:05:07,507 A NUMBER OF ADVOCATES AND 116 00:05:07,573 --> 00:05:08,174 SCIENTISTS AND RESEARCHERS HAVE 117 00:05:08,241 --> 00:05:11,210 DONE A LOT OF HARD WORK TO PUT A 118 00:05:11,277 --> 00:05:13,613 GREAT DEAL OF EMPHASIS ON 119 00:05:13,680 --> 00:05:15,081 LYMPHATIC DISEASES AND DESERVE 120 00:05:15,148 --> 00:05:21,187 TO BE APPLAUDED FOR THOSE 121 00:05:21,254 --> 00:05:23,356 EFFORTS. 122 00:05:23,423 --> 00:05:24,924 PARTICULAR SHOUT-OUT TO LEARN, 123 00:05:24,991 --> 00:05:30,830 AT THE FOREFRONT OF ADVOCATING, 124 00:05:30,897 --> 00:05:31,798 MANY OF OUR COMMISSIONERS ARE 125 00:05:31,864 --> 00:05:32,799 INVOLVED IN THE ORGANIZATION AS 126 00:05:32,865 --> 00:05:34,233 WELL AS A NUMBER OF OTHER 127 00:05:34,300 --> 00:05:34,801 ORGANIZATIONS. 128 00:05:34,867 --> 00:05:37,437 I WANT TO THANK THE 129 00:05:37,503 --> 00:05:38,037 COMMISSIONERS, PROBABLY THE 130 00:05:38,104 --> 00:05:39,906 FIRST TIME IN MY CAREER THAT 131 00:05:39,972 --> 00:05:43,643 I'VE EVER TRIED TO ASSEMBLE A 132 00:05:43,710 --> 00:05:46,746 GROUP AND EVERYONE SAID YES. 133 00:05:46,813 --> 00:05:48,481 100% OF THE PERSONS WE REACHED 134 00:05:48,548 --> 00:05:50,349 OUT TO SAID YES. 135 00:05:50,416 --> 00:05:53,186 AND YOU ALL ARE REPRESENTATIVE 136 00:05:53,252 --> 00:06:00,093 OF QUITE A NOTED COHORT GROUP OF 137 00:06:00,159 --> 00:06:01,627 INDIVIDUALS REPRESENTING 138 00:06:01,694 --> 00:06:02,495 DIFFERENT FACETS OF RESEARCH, 139 00:06:02,562 --> 00:06:06,632 DIFFERENT AREAS OF SCIENCES AND 140 00:06:06,699 --> 00:06:08,167 LIVED EXPERIENCES, THAT WAS THE 141 00:06:08,234 --> 00:06:10,203 DEMAND OF OUR DIRECTOR TO BE AS 142 00:06:10,269 --> 00:06:12,004 DIVERSE AND INCLUSIVE AS YOU 143 00:06:12,071 --> 00:06:13,740 COULD SUCH THAT WE GARNERED 144 00:06:13,806 --> 00:06:15,208 THROUGH THE DIALOGUE OF THE 145 00:06:15,274 --> 00:06:16,709 COMMISSION AS MUCH DIFFERENT 146 00:06:16,776 --> 00:06:18,578 PERSPECTIVES AS WE COULD AND I 147 00:06:18,644 --> 00:06:20,113 WANT TO THANK YOU FOR SAYING YES 148 00:06:20,179 --> 00:06:21,180 AND BEING HERE TODAY. 149 00:06:21,247 --> 00:06:25,651 I ALSO WANT TO THANK MY 150 00:06:25,718 --> 00:06:27,553 COLLEAGUES IN DCVS WHO STEPPED 151 00:06:27,620 --> 00:06:29,155 IN TO LEAD AND HAVE ALWAYS 152 00:06:29,222 --> 00:06:33,426 STEPPED IN TO LEAD IN THIS AREA 153 00:06:33,493 --> 00:06:37,330 OF RESEARCH, AND SELEN FOR 154 00:06:37,396 --> 00:06:39,232 SERVING AS EXECUTIVE SECRETARY. 155 00:06:39,298 --> 00:06:42,435 AND THE GROUP OF RESEARCHERS, 156 00:06:42,502 --> 00:06:43,903 PHENOMENAL, AND STAFF ACROSS THE 157 00:06:43,970 --> 00:06:47,774 NIH HELPED IN THE TNLCC THAT 158 00:06:47,840 --> 00:06:49,108 HAVE BEEN WORKING FOR YEARS AND 159 00:06:49,175 --> 00:06:50,676 HAVE DONE A NUMBER OF 160 00:06:50,743 --> 00:06:52,612 ADVANCEMENTS IN THIS AREA AND 161 00:06:52,678 --> 00:06:54,046 WHO -- WHETHER YOU SEE THEM OR 162 00:06:54,113 --> 00:06:55,615 NOT, YOU SHOULD BE COMFORTED IN 163 00:06:55,681 --> 00:06:57,283 KNOWING THEY ARE ALWAYS ON THE 164 00:06:57,350 --> 00:07:01,554 FOREFRONT OF PUSHING THE AGENDA. 165 00:07:01,621 --> 00:07:03,689 WITH THAT I WANT TO ANNOUNCE 166 00:07:03,756 --> 00:07:05,658 THAT THE TEAM HAS DECIDED THE 167 00:07:05,725 --> 00:07:07,827 SECOND BULLET IN THE CHARGE 168 00:07:07,894 --> 00:07:10,596 STATEMENT WAS REACH FAR AND WIDE 169 00:07:10,663 --> 00:07:12,131 BASICALLY, FIND AS MUCH, LISTEN 170 00:07:12,198 --> 00:07:14,100 AS MUCH, HEAR AND GATHER AS MUCH 171 00:07:14,167 --> 00:07:15,501 INPUT AS YOU CAN. 172 00:07:15,568 --> 00:07:17,036 SO THE COMMISSION WILL KICK OFF 173 00:07:17,103 --> 00:07:19,672 THAT REACH, IF YOU WILL, WITH 174 00:07:19,739 --> 00:07:21,440 THE REQUEST FOR INFORMATION, 175 00:07:21,507 --> 00:07:22,708 REQUEST FOR INFORMATION IS A 176 00:07:22,775 --> 00:07:25,144 STANDARD TYPE OF PROCESS THAT 177 00:07:25,211 --> 00:07:27,146 THE FEDERAL GOVERNMENT USES. 178 00:07:27,213 --> 00:07:28,815 WE HOPE TO HAVE THAT REQUEST OUT 179 00:07:28,881 --> 00:07:31,717 IN THE FIELD IN THE NEXT COUPLE 180 00:07:31,784 --> 00:07:32,084 WEEKS. 181 00:07:32,151 --> 00:07:33,986 IT WILL REMAIN ACTIVE IN THE 182 00:07:34,053 --> 00:07:35,521 FIELD FOR 30 DAYS, AND WE'RE 183 00:07:35,588 --> 00:07:37,690 GOING TO DEPEND ON YOU TO PUSH 184 00:07:37,757 --> 00:07:44,197 IT AND PROMOTE IT AND ENCOURAGE 185 00:07:44,263 --> 00:07:47,233 RESPONSES TO IT BUT WE HOPE THAT 186 00:07:47,300 --> 00:07:48,968 WILL STIMULATE ONGOING EFFORTS 187 00:07:49,035 --> 00:07:51,404 TAKEN BY THE COMMISSION TO GET 188 00:07:51,470 --> 00:07:56,175 ADDITIONAL -- TO DIG DEEPER AND 189 00:07:56,242 --> 00:07:57,643 HEAR MORE AND WHAT COMES ON THE 190 00:07:57,710 --> 00:07:58,845 FIRST PASS. 191 00:07:58,911 --> 00:08:01,614 THANK YOU FOR BEING HERE AND 192 00:08:01,681 --> 00:08:04,450 AGAIN I'M EXCITED. 193 00:08:07,186 --> 00:08:12,091 >> I HAVE TO GET USED TO THE 194 00:08:12,158 --> 00:08:12,491 MICROPHONE. 195 00:08:12,558 --> 00:08:15,328 THANK YOU. 196 00:08:15,394 --> 00:08:25,905 WE'RE GOING TO PASS IT TO THE 197 00:08:26,339 --> 00:08:27,506 NCLD CO-CHAIR, STEPHANIE DREYER. 198 00:08:27,573 --> 00:08:29,575 >> WE'RE ABOUT TO MOVE INTO A 199 00:08:29,642 --> 00:08:30,743 SHARING SESSION TO EXPLORE THE 200 00:08:30,810 --> 00:08:31,878 WORK ACROSS THE COMMISSION. 201 00:08:31,944 --> 00:08:33,746 A COUPLE THINGS BEFORE WE GET 202 00:08:33,813 --> 00:08:37,617 THERE, MORE CONTEXT FOR THOSE 203 00:08:37,683 --> 00:08:38,718 OBSERVING, OUR COMMISSION 204 00:08:38,784 --> 00:08:40,686 DECIDED ON SIX KEY THEMES TO 205 00:08:40,753 --> 00:08:42,221 HELP FOCUS THE WORK AND THE 206 00:08:42,288 --> 00:08:44,090 FOLKS IN THIS ROOM AND JOINING 207 00:08:44,156 --> 00:08:46,659 ONLINE HAVE BEEN HARD AT WORK 208 00:08:46,726 --> 00:08:47,293 DETERMINING WHAT THAT COMMITTEE 209 00:08:47,360 --> 00:08:50,062 SHOULD BE DOING OVER THE NEXT 210 00:08:50,129 --> 00:08:50,630 FEW MONTHS. 211 00:08:50,696 --> 00:08:52,665 SO WE'RE GOING TO HEAR A LOT 212 00:08:52,732 --> 00:08:54,433 ABOUT THAT TODAY. 213 00:08:54,500 --> 00:08:56,736 AS WE DO, A FEW REMINDERS FOR 214 00:08:56,802 --> 00:08:57,470 THE COMMISSIONERS. 215 00:08:57,536 --> 00:09:05,478 IF WE CAN MAYBE MOVETO THE NEXT 216 00:09:05,544 --> 00:09:05,678 SLIDE. 217 00:09:05,745 --> 00:09:07,013 AS YOU LISTEN TO THE SHARING 218 00:09:07,079 --> 00:09:08,114 SESSIONS YOU'RE NOW GOING TO 219 00:09:08,180 --> 00:09:09,649 HAVE EXPOSURE TO SOME OF THE 220 00:09:09,715 --> 00:09:12,852 WORK MAYBE YOU HAVEN'T BEEN ABLE 221 00:09:12,919 --> 00:09:14,887 TO BE PRIVY TO OVER THE LAST FEW 222 00:09:14,954 --> 00:09:15,621 WEEKS AND MONTHS. 223 00:09:15,688 --> 00:09:17,990 AND SO MY ASK OF YOU AS YOU 224 00:09:18,057 --> 00:09:19,191 LISTSEN TO THESE REPORTS IS 225 00:09:19,258 --> 00:09:20,493 THINK ABOUT WHAT ARE THEY DOING 226 00:09:20,559 --> 00:09:22,161 THAT YOU THINK IS REALLY 227 00:09:22,228 --> 00:09:23,896 WORKING, AND WE'LL ASK FOR YOUR 228 00:09:23,963 --> 00:09:25,331 COMMENTS ON THAT. 229 00:09:25,398 --> 00:09:27,033 WHERE COULD THEY MAKE THEIR 230 00:09:27,099 --> 00:09:28,467 PLANS EVEN STRONGER SO THIS IS 231 00:09:28,534 --> 00:09:31,737 WHERE THE BENEFIT OF US ALL 232 00:09:31,804 --> 00:09:33,406 BEING TOGETHER CAN REALLY 233 00:09:33,472 --> 00:09:35,374 BOLSTER THE WORK. 234 00:09:35,441 --> 00:09:37,009 AND LAST, WHAT CONNECTIONS DOES 235 00:09:37,076 --> 00:09:38,678 THIS COMMITTEE'S WORK HAVE TO MY 236 00:09:38,744 --> 00:09:40,079 OWN COMMITTEE'S WORK? 237 00:09:40,146 --> 00:09:42,181 SO, AS STAN AND I WERE ABLE TO 238 00:09:42,248 --> 00:09:44,216 LOOK OVER THE WORK, WE SAW A 239 00:09:44,283 --> 00:09:45,818 NUMBER OF CONNECTIONS AND WE 240 00:09:45,885 --> 00:09:48,287 WANT YOU ALL TO SEE THOSE TOO SO 241 00:09:48,354 --> 00:09:50,256 YOU CAN HELP EACH OTHER DO THE 242 00:09:50,323 --> 00:09:52,091 WORK, MAKE IT STRONGER, AND FIND 243 00:09:52,158 --> 00:09:52,959 SOME SYNERGIES. 244 00:09:53,025 --> 00:09:54,727 DOES THAT SOUND GOOD? 245 00:09:54,794 --> 00:09:55,061 OKAY. 246 00:09:55,127 --> 00:09:56,929 SO, I HOPE THAT YOU'RE LISTENING 247 00:09:56,996 --> 00:09:59,765 AND PREPARED TO GIVE FEEDBACK 248 00:09:59,832 --> 00:10:00,132 THERE. 249 00:10:00,199 --> 00:10:01,600 AS A REMINDER, WE HAVE SIX 250 00:10:01,667 --> 00:10:03,035 COMMITTEES, SO IF WE MOVE TO THE 251 00:10:03,102 --> 00:10:08,107 NEXT SLIDE WE CAN SEE THE SIX 252 00:10:08,174 --> 00:10:08,407 COMMITTEES. 253 00:10:08,474 --> 00:10:09,608 MAYBE. 254 00:10:09,675 --> 00:10:10,810 HOPEFULLY WE CAN MOVE TO THE 255 00:10:10,876 --> 00:10:11,744 NEXT SLIDE. 256 00:10:11,811 --> 00:10:12,545 THERE WE GO. 257 00:10:12,611 --> 00:10:18,584 ALL RIGHT. 258 00:10:18,651 --> 00:10:21,554 WE HAVE FOLK FOCUSED ON 259 00:10:21,620 --> 00:10:22,989 SCIENTIFIC ADVANCEMENTS, 260 00:10:23,055 --> 00:10:24,390 EDUCATIONAL IMPERATIVES, 261 00:10:24,457 --> 00:10:25,624 MEASURABLE RESULTS, PATIENT 262 00:10:25,691 --> 00:10:27,126 TOOLS, THIRD PARTY COVERAGE, 263 00:10:27,193 --> 00:10:27,927 COMMUNITY GROWTH. 264 00:10:27,994 --> 00:10:29,762 THAT'S ALSO THE ORDER IN WHICH 265 00:10:29,829 --> 00:10:34,200 WE'LL SEE THE COMMITTEES PRESENT 266 00:10:34,266 --> 00:10:35,001 THEIR WORK. 267 00:10:35,067 --> 00:10:37,203 WE WANTED TO GIVE YOU A PREVIEW 268 00:10:37,269 --> 00:10:40,473 OF THE COMMON THEMES AND 269 00:10:40,539 --> 00:10:42,008 CONNECTIONS IN RECEIVING YOUR 270 00:10:42,074 --> 00:10:42,308 REPORTS. 271 00:10:42,375 --> 00:10:42,775 NEXT SLIDE. 272 00:10:42,842 --> 00:10:47,947 YOU'LL SEE A FEW OF THESE HERE. 273 00:10:48,014 --> 00:10:52,318 WHAT YOU ALL DID HAD A LOT OF 274 00:10:52,385 --> 00:10:53,853 BREADTH BUT A FEW THINGS CAME UP 275 00:10:53,919 --> 00:10:56,188 AND WE WANTED TO MAKE THOSE 276 00:10:56,255 --> 00:10:58,758 CLEAR AHEAD OF GOING UP SO YOU 277 00:10:58,824 --> 00:11:00,826 COULD LISTEN FOR THESE THINGS. 278 00:11:00,893 --> 00:11:05,531 THE GROUPS WANTED TO PURSUE 279 00:11:05,598 --> 00:11:06,532 INCLUSIVE LEARNING. 280 00:11:06,599 --> 00:11:07,967 LENOREA TALKED ABOUT THE RFI, 281 00:11:08,034 --> 00:11:10,269 WE'RE TRYING TO HEAR FROM 282 00:11:10,336 --> 00:11:12,705 PATIENTS AND CAREGIVERS TO 283 00:11:12,772 --> 00:11:14,440 SCIENTISTS AND RESEARCHERS, 284 00:11:14,507 --> 00:11:16,308 THROUGH TO INDUSTRY, ACADEMIA, 285 00:11:16,375 --> 00:11:21,447 AND FAR BEYOND. 286 00:11:21,514 --> 00:11:23,849 WE SAW GROUPS TALKING ABOUT THE 287 00:11:23,916 --> 00:11:25,684 CHALLENGE THAT COMES WITH 288 00:11:25,751 --> 00:11:27,753 SCOPING, SIZING, MAPPING THE 289 00:11:27,820 --> 00:11:28,554 LYMPHATIC ECOSYSTEM, CLEARLY 290 00:11:28,621 --> 00:11:32,191 SOME WORK THAT NEEDS TO BE DONE. 291 00:11:32,258 --> 00:11:34,727 WE SAW A LOT OF INDICATION OF A 292 00:11:34,794 --> 00:11:37,029 NEED TO FOSTER COLLABORATION AND 293 00:11:37,096 --> 00:11:39,999 ALIGNMENT ACROSS THAT LYMPHATIC 294 00:11:40,066 --> 00:11:40,266 COMMUNITY. 295 00:11:40,332 --> 00:11:40,933 CONSIDERING SOCIAL DETERMINANTS 296 00:11:41,000 --> 00:11:45,871 OF HEALTH AND MAKING SURE WE'RE 297 00:11:45,938 --> 00:11:49,842 HELPING ALL PEOPLE, DESIGNING 298 00:11:49,909 --> 00:11:51,811 ONGOING COMMUNITY SUPPORT AND 299 00:11:51,877 --> 00:11:55,281 INFRASTRUCTURE AND EMPOWERING 300 00:11:55,347 --> 00:11:56,615 AWARENESS AND EDUCATION, PART OF 301 00:11:56,682 --> 00:11:58,818 THE WORK TO COME, AS YOU LISTEN 302 00:11:58,884 --> 00:12:00,019 FOR CONNECTION POINTS THESE ARE 303 00:12:00,086 --> 00:12:03,222 GOOD CLUES OF WHERE YOU'LL SEE 304 00:12:03,289 --> 00:12:04,056 THAT POTENTIAL. 305 00:12:04,123 --> 00:12:07,393 ANY QUESTIONS BEFORE WE GET INTO 306 00:12:07,460 --> 00:12:08,260 THE SHARING? 307 00:12:08,327 --> 00:12:08,661 NO? 308 00:12:08,727 --> 00:12:08,994 OKAY. 309 00:12:09,061 --> 00:12:12,798 SO IF WE MOVE TO THE NEXT SLIDE. 310 00:12:12,865 --> 00:12:15,701 I BELIEVE OUR SCIENTIFIC 311 00:12:15,768 --> 00:12:18,137 COMMITTEE IS KICKING US OFF. 312 00:12:18,204 --> 00:12:20,239 WHO IS PRESENTING FOR SCIENTIFIC 313 00:12:20,306 --> 00:12:20,773 COMMITTEE? 314 00:12:20,840 --> 00:12:22,975 EXCELLENT. 315 00:12:29,381 --> 00:12:32,418 >> ONE BRIEF COMMENT BEFORE THIS 316 00:12:32,485 --> 00:12:33,452 STARTS, WE'LL OPEN THE 317 00:12:33,519 --> 00:12:34,286 DISCUSSION AND PLEASE DON'T 318 00:12:34,353 --> 00:12:37,790 FORGET TO TURN ON YOUR 319 00:12:37,857 --> 00:12:42,561 MICROPHONES. 320 00:12:42,628 --> 00:12:44,730 >> THANK YOU. 321 00:12:44,797 --> 00:12:48,134 I'M TIM PEDERA, MY DAY JOB IS AT 322 00:12:48,200 --> 00:12:49,568 MASS GENERAL HOSPITAL MEDICAL 323 00:12:49,635 --> 00:12:50,136 SCHOOL, MEDICAL SCHOOL. 324 00:12:50,202 --> 00:12:53,572 IF I COULD HAVE THE NEXT SLIDE. 325 00:12:53,639 --> 00:12:54,673 I HAVE THE PRIVILEGE OF 326 00:12:54,740 --> 00:12:57,343 PRESENTING THE WORK FROM THE 327 00:12:57,409 --> 00:12:58,043 SCIENTIFIC ADVANCEMENT 328 00:12:58,110 --> 00:12:58,310 COMMITTEE. 329 00:12:58,377 --> 00:13:01,847 WE WANT TO THANK ALL THE 330 00:13:01,914 --> 00:13:08,521 COMMITTEE MEMBERS AND THANK 331 00:13:08,587 --> 00:13:09,989 MAXIM ITKIN, CO-CHAIR. 332 00:13:10,055 --> 00:13:15,461 WE HAVE A BIG GROUP AND HAD 333 00:13:15,528 --> 00:13:16,729 GREAT VIRTUAL DISCUSSIONS 334 00:13:16,795 --> 00:13:18,564 THROUGH VIRTUAL ENVIRONMENTS OR 335 00:13:18,631 --> 00:13:19,632 ONLINE. 336 00:13:19,698 --> 00:13:25,938 WE'LL LIKE TO SHARE, I LOOK 337 00:13:26,005 --> 00:13:27,806 FORWARD TO DISCUSSION TODAY. 338 00:13:27,873 --> 00:13:28,574 NEXT SLIDE. 339 00:13:28,641 --> 00:13:30,342 SO, THE CURRENT VERSION OF OUR 340 00:13:30,409 --> 00:13:31,510 VISION STATEMENT IS THAT OUR 341 00:13:31,577 --> 00:13:34,480 GROUP AIMS TO BUILD A PERMANENT 342 00:13:34,547 --> 00:13:35,915 RESEARCH INFRASTRUCTURE AND 343 00:13:35,981 --> 00:13:37,650 DEFINE A SCIENTIFIC ROADMAP TO 344 00:13:37,716 --> 00:13:40,619 IN ORDER TO ADVANCE LYMPHATIC 345 00:13:40,686 --> 00:13:41,353 SCIENCE NECESSARY, DEVELOP 346 00:13:41,420 --> 00:13:43,022 DIAGNOSTICS AND THERAPIES FOR 347 00:13:43,088 --> 00:13:45,191 PATIENTS WITH LYMPHATIC DISEASES 348 00:13:45,257 --> 00:13:48,427 AND THE WIDE RANGE OF DISEASES 349 00:13:48,494 --> 00:13:51,430 IMPACTED BY ALTERATIONS IN 350 00:13:51,497 --> 00:13:53,265 LYMPHATIC VASCULAR FUNCTION. 351 00:13:53,332 --> 00:13:55,134 THERE'S A SCIENTIFIC ROADMAP 352 00:13:55,201 --> 00:13:57,369 WHICH WE THINK IS SETTING 353 00:13:57,436 --> 00:14:01,207 PRIORITIES AND AGENDA IN A SHORT 354 00:14:01,273 --> 00:14:04,710 TERM WAY, ONE URGENT THING THAT 355 00:14:04,777 --> 00:14:06,712 NEEDS TO BE ADDRESSED AND FOR 356 00:14:06,779 --> 00:14:08,814 THE FAR FUTURE IN TERMS OF 357 00:14:08,881 --> 00:14:10,015 CONTINUATION AND DEVELOPMENT OF 358 00:14:10,082 --> 00:14:11,083 LYMPHATIC RESEARCH. 359 00:14:11,150 --> 00:14:13,185 THE OTHER PIECE IS PERMANENT 360 00:14:13,252 --> 00:14:14,153 RESEARCH INFRASTRUCTURE. 361 00:14:14,220 --> 00:14:18,490 THAT CAN TAKE ON MANY DIFFERENT 362 00:14:18,557 --> 00:14:20,059 COMPONENTS, INCLUDING SHARED 363 00:14:20,125 --> 00:14:22,294 RESOURCES THAT ARE NEEDED, 364 00:14:22,361 --> 00:14:23,996 CURRENTLY MISSING AMONGST THE 365 00:14:24,063 --> 00:14:28,300 LYMPHATIC RESEARCH COMMUNITY, 366 00:14:28,367 --> 00:14:29,535 THINGS LIKE PATIENT REGISTRIES, 367 00:14:29,602 --> 00:14:31,570 MATERIAL REPOSITORIES AND THAT 368 00:14:31,637 --> 00:14:32,972 SORT OF THING. 369 00:14:33,038 --> 00:14:35,407 AS WELL AS PROBABLY STRUCTURES 370 00:14:35,474 --> 00:14:39,979 LIKELY WITHIN THE NIH TO HELP 371 00:14:40,045 --> 00:14:41,313 DRIVE THIS SCIENTIFIC ROADMAP 372 00:14:41,380 --> 00:14:44,650 FORWARD, LONG INTO THE FUTURE. 373 00:14:44,717 --> 00:14:46,652 THAT CAN HAVE VERY DIFFERENT 374 00:14:46,719 --> 00:14:46,986 LOOKS. 375 00:14:47,052 --> 00:14:48,153 WE CAN THINK OF INTRAMURAL, 376 00:14:48,220 --> 00:14:51,156 WHICH MIGHT BE PART OF THAT, 377 00:14:51,223 --> 00:14:52,591 INTRAMURAL RESEARCH PROGRAM, BUT 378 00:14:52,658 --> 00:14:55,761 ALSO BECAUSE OF THE WIDE NUMBER 379 00:14:55,828 --> 00:14:57,630 OF STAKEHOLDERS WITHIN 380 00:14:57,696 --> 00:14:58,297 LYMPHATICS AND LYMPHATIC 381 00:14:58,364 --> 00:14:59,498 DISEASES LIKELY THIS WILL NEED 382 00:14:59,565 --> 00:15:02,301 TO BE AN OUT WARD-LOOKING SORT 383 00:15:02,368 --> 00:15:03,969 OF INFRASTRUCTURE AS WELL, 384 00:15:04,036 --> 00:15:06,705 TAKING INTO ACCOUNT ALL THOSE 385 00:15:06,772 --> 00:15:07,906 VAST RESOURCES AVAILABLE AND 386 00:15:07,973 --> 00:15:09,308 WE'RE TRYING TO BRING INTO THIS 387 00:15:09,375 --> 00:15:10,542 FIELD AS WELL. 388 00:15:10,609 --> 00:15:14,179 SO, IF I COULD HAVE THE NEXT 389 00:15:14,246 --> 00:15:14,713 SLIDE. 390 00:15:14,780 --> 00:15:16,448 SO, WHY, OF COURSE IT'S 391 00:15:16,515 --> 00:15:16,715 PATIENTS. 392 00:15:16,782 --> 00:15:19,018 IT'S THE 20 MILLION PEOPLE IN 393 00:15:19,084 --> 00:15:22,221 THE U.S. AND 250 MILLION AROUND 394 00:15:22,288 --> 00:15:23,555 THE WORLD SUFFERING FROM 395 00:15:23,622 --> 00:15:25,557 SYMPTOMATIC LYMPHATIC DISEASES. 396 00:15:25,624 --> 00:15:27,226 WE'LL PROBABLY SEE SIMILAR 397 00:15:27,293 --> 00:15:28,427 NUMBERS PRESENTED BY OTHER 398 00:15:28,494 --> 00:15:29,928 GROUPS TODAY, AND THE NUMBERS 399 00:15:29,995 --> 00:15:32,331 MIGHT NOT ALWAYS BE THE SAME OF 400 00:15:32,398 --> 00:15:33,732 WHAT I'VE SHOWN HERE, AND 401 00:15:33,799 --> 00:15:35,267 ACTUALLY I THINK THAT'S OKAY 402 00:15:35,334 --> 00:15:37,202 RIGHT NOW BECAUSE I THINK IT'S 403 00:15:37,269 --> 00:15:40,806 HIGHLIGHTING THE FACT IT'S BEEN 404 00:15:40,873 --> 00:15:42,641 HARD TO IDENTIFY PATIENTS AND 405 00:15:42,708 --> 00:15:44,476 NUMBERS OF THOSE PATIENTS FOR A 406 00:15:44,543 --> 00:15:47,780 VARIETY OF REASONS. 407 00:15:47,846 --> 00:15:51,483 A LOT OF IT IS LIKELY 408 00:15:51,550 --> 00:15:53,352 UNDERDIAGNOSED, PATIENTS ARE NOT 409 00:15:53,419 --> 00:15:54,653 GETTING PROPERLY DIAGNOSED, AND 410 00:15:54,720 --> 00:15:55,821 PROBLEMS CONNECTING DATA HOW 411 00:15:55,888 --> 00:15:57,456 THINGS GET CODED AND INSURANCE. 412 00:15:57,523 --> 00:15:59,591 SOME PEOPLE MIGHT HAVE LYMPHATIC 413 00:15:59,658 --> 00:16:00,893 DISEASE AND GET CODED 414 00:16:00,959 --> 00:16:01,660 DIFFERENTLY FOR INSURANCE 415 00:16:01,727 --> 00:16:02,161 PURPOSES. 416 00:16:02,227 --> 00:16:03,662 PART OF THE CHARGE AND PART OF 417 00:16:03,729 --> 00:16:04,930 THE LEARNING PLAN FOR OUR 418 00:16:04,997 --> 00:16:07,433 COMMITTEE AND THE COMMISSION IS 419 00:16:07,499 --> 00:16:08,867 PROBABLY TO HELP BETTER IDENTIFY 420 00:16:08,934 --> 00:16:10,636 THE PATIENTS THAT ARE HERE. 421 00:16:10,703 --> 00:16:13,772 AND OF COURSE THE OTHER PIECE OF 422 00:16:13,839 --> 00:16:16,075 THAT IS A LOT OF PATIENTS 423 00:16:16,141 --> 00:16:18,043 SUFFERING FROM THESE DISORDERS 424 00:16:18,110 --> 00:16:20,379 AND DISEASES AND MANY OF THEM 425 00:16:20,446 --> 00:16:22,748 HAVE LIMITED ACCESS TO EFFECTIVE 426 00:16:22,815 --> 00:16:23,148 TREATMENT. 427 00:16:23,215 --> 00:16:24,550 AND SO IT'S THAT THEY HAVE THE 428 00:16:24,616 --> 00:16:29,254 DISEASE AND THEY ARE SUFFERING, 429 00:16:29,321 --> 00:16:30,556 AND LEAVING THESE PATIENTS 430 00:16:30,622 --> 00:16:32,091 UNDERSERVED. 431 00:16:32,157 --> 00:16:33,959 IF I CAN PERSONALLY 432 00:16:34,026 --> 00:16:35,961 EDITORIALIZED TALKING FOR ME, 433 00:16:36,028 --> 00:16:37,129 EXTREMELY UNDERSERVED, AGAIN MY 434 00:16:37,196 --> 00:16:38,430 PERSONAL OPINION, I THINK 435 00:16:38,497 --> 00:16:40,833 THERE'S BEEN A FAILURE OF BOTH 436 00:16:40,899 --> 00:16:41,433 LYMPHATIC RESEARCH COMMUNITY 437 00:16:41,500 --> 00:16:46,004 OVER THE YEARS AND SORT OF 438 00:16:46,071 --> 00:16:47,139 CLINICAL MEDICINE, LYMPHATIC 439 00:16:47,206 --> 00:16:48,574 SPACES, AT A SYSTEMWIDE LEVEL 440 00:16:48,640 --> 00:16:50,642 THAT HAS LEFT THESE PATIENTS SO 441 00:16:50,709 --> 00:16:53,712 UNDERSERVED FOR SO LONG. 442 00:16:53,779 --> 00:16:56,248 CAN WE GO BACK ONE SLIDE? 443 00:16:56,315 --> 00:16:57,850 YOU CAN SEE THIS LAST PHRASE, 444 00:16:57,916 --> 00:17:01,053 THE WIDE RANGE OF DISEASES 445 00:17:01,120 --> 00:17:02,354 IMPACTED BY ALTERATIONS OF 446 00:17:02,421 --> 00:17:03,355 VASCULAR LYMPHATIC FUNCTION. 447 00:17:03,422 --> 00:17:06,158 THAT CAME UP, IF WE CAN ADVANCE 448 00:17:06,225 --> 00:17:07,693 TWO SLIDES FORWARD, IN WHAT WE 449 00:17:07,760 --> 00:17:11,530 MEAN BY THAT, I'M GOING TO SEE A 450 00:17:11,597 --> 00:17:15,334 COUPLE SLIDES FROM A BEAUTIFUL 451 00:17:15,401 --> 00:17:18,337 REVIEW FROM OLIVER AND RANDALL 452 00:17:18,404 --> 00:17:20,572 AND TASHA HARVEY, AS THEY LAID 453 00:17:20,639 --> 00:17:31,183 OUT THE REVIEW THEY HAVE SHOWN 454 00:17:31,550 --> 00:17:41,293 THERE'S KNOWN LYMPHATIC DISEASES 455 00:17:41,360 --> 00:17:42,227 LYMPHEDEMA, LIPIDEMIA, CANCER 456 00:17:42,294 --> 00:17:43,262 PROGRESSION, THERE'S A HOST OF 457 00:17:43,328 --> 00:17:45,798 RESEARCH IN THE LAST DECADE 458 00:17:45,864 --> 00:17:47,366 SHOWN AND DRIVEN LYMPHATICS ARE 459 00:17:47,433 --> 00:17:50,068 INVOLVED IN MANY OTHER ORGANS, 460 00:17:50,135 --> 00:17:52,137 MANY DISEASE PROCESSES INCLUDING 461 00:17:52,204 --> 00:17:56,475 THINGS LIKE METABOLIC SYNDROME 462 00:17:56,542 --> 00:18:02,214 AND OBESITY, CROHN'S DISEASE, 463 00:18:02,281 --> 00:18:04,082 IRRITABLE BOWEL SYSTEM, HOW 464 00:18:04,149 --> 00:18:05,751 LYMPHATIC DRAINAGE OF THE CMC 465 00:18:05,818 --> 00:18:07,219 COULD BE AFFECTING A LOT OF 466 00:18:07,286 --> 00:18:08,220 DISEASE PROCESS PARTICULARLY 467 00:18:08,287 --> 00:18:09,655 WHERE THERE'S ACCUMULATION OF 468 00:18:09,721 --> 00:18:13,926 PROTEINS IN THE BRAIN SUCH AS 469 00:18:13,992 --> 00:18:14,793 ALZHEIMER'S, HUNTINGTON'S 470 00:18:14,860 --> 00:18:16,161 DISEASE AND WORK HOW BRAINS CAN 471 00:18:16,228 --> 00:18:19,898 BE REPAIRED AFTER INJURY AND 472 00:18:19,965 --> 00:18:22,167 THINGS LIKE TRAUMA BRAIN INJURY 473 00:18:22,234 --> 00:18:23,168 WHERE LYMPHATIC DRAINAGE COULD 474 00:18:23,235 --> 00:18:25,971 BE HELPING OR USED TO REPAIR THE 475 00:18:26,038 --> 00:18:28,373 BRAIN AFTER THESE INJURIES 476 00:18:28,440 --> 00:18:29,908 BECAUSE PATIENTS WITH TBI ARE 477 00:18:29,975 --> 00:18:40,686 PRONE TO DEVELOPING EARLY ONSET. 478 00:18:51,997 --> 00:18:53,799 CARDIOVASCULAR MEDICINE, 479 00:18:53,866 --> 00:18:56,068 ATHEROSCLEROTIC PARTS, AND 480 00:18:56,134 --> 00:18:57,102 AFFECTING LUNG DISEASES. 481 00:18:57,169 --> 00:18:59,771 UPPER RIGHT, TO BE DETERMINED, 482 00:18:59,838 --> 00:19:00,939 AS WE'VE SOCIETY FORWARD THIS 483 00:19:01,006 --> 00:19:02,007 VISION STATEMENT AND PLANS WE 484 00:19:02,074 --> 00:19:03,675 NEED TO BE OPEN TO THE FACT 485 00:19:03,742 --> 00:19:05,511 THERE'S A LOT OF THINGS WE DON'T 486 00:19:05,577 --> 00:19:05,944 KNOW. 487 00:19:06,011 --> 00:19:08,013 AS WE SET FORTH A BOLD VISION 488 00:19:08,080 --> 00:19:09,314 INTO THE FUTURE, WE NEED TO MAKE 489 00:19:09,381 --> 00:19:11,950 SPACE FOR ALL THE THINGS WE CAN 490 00:19:12,017 --> 00:19:14,386 DISCOVER THROUGH OUR RESEARCH 491 00:19:14,453 --> 00:19:14,586 PLANS. 492 00:19:14,653 --> 00:19:16,255 SO NEXT SLIDE PLEASE. 493 00:19:16,321 --> 00:19:19,858 AND THEN AS I THINK ABOUT 494 00:19:19,925 --> 00:19:24,429 LYMPHATICS I USE THESE TWO 495 00:19:24,496 --> 00:19:25,430 DIAGRAMS, CRITICAL DIAGRAMS. 496 00:19:25,497 --> 00:19:31,870 ON THE LEFT I THINK OF THE FLUID 497 00:19:31,937 --> 00:19:34,640 COMPONENT, LYMPHATICS DRAINING 498 00:19:34,706 --> 00:19:35,941 FLUID AND PREVENTING EDEMA, 499 00:19:36,008 --> 00:19:38,210 CONNECTED TO THE LYMPH NODES, 500 00:19:38,277 --> 00:19:39,678 CRITICAL TO DRIVING OUR SYSTEM. 501 00:19:39,745 --> 00:19:48,854 SO AS WE THINK WE CANNOT 502 00:19:48,921 --> 00:19:50,856 SEPARATE THESE, PLAYING CRITICAL 503 00:19:50,923 --> 00:19:51,590 ROLES, IMMUNOLOGY AND 504 00:19:51,657 --> 00:19:52,658 INFLAMMATION IS PLAYING A ROLE 505 00:19:52,724 --> 00:19:55,294 IN WHAT WE DISCOVER. 506 00:19:55,360 --> 00:19:59,231 THE OTHER THING I LIKE OUR 507 00:19:59,298 --> 00:20:03,368 LYMPHATIC SYSTEM IS NOT IN 508 00:20:03,435 --> 00:20:04,836 COMPARISON TO BLOOD CIRCUMSTANCE 509 00:20:04,903 --> 00:20:07,906 LAKES, IT'S NOT A WELL-MIXED 510 00:20:07,973 --> 00:20:08,340 SYSTEM. 511 00:20:08,407 --> 00:20:10,442 IT IS LOCAL. 512 00:20:10,509 --> 00:20:13,011 THE LYMPH BEING DRAINED WILL 513 00:20:13,078 --> 00:20:14,479 HAVE A DIFFERENT COMPOSITION 514 00:20:14,546 --> 00:20:18,984 THAN THE LYMPH DRAINING OUT OF 515 00:20:19,051 --> 00:20:23,789 YOUR GUT INTO MESS MESENTERIC 516 00:20:23,855 --> 00:20:25,524 LYMPH NODES, HELD BACK FOR SO 517 00:20:25,591 --> 00:20:27,059 LONG, YOU CAN'T SAMPLE ONE LYMPH 518 00:20:27,125 --> 00:20:29,194 NODE AND SAY THIS REPRESENTS ALL 519 00:20:29,261 --> 00:20:30,662 LYMPH NODES. 520 00:20:30,729 --> 00:20:32,664 WE CAN'T SAMPLE LYMPH FROM ONE 521 00:20:32,731 --> 00:20:36,468 AREA AND THINK THAT REPRESENTS 522 00:20:36,535 --> 00:20:39,404 ALL LYMPH. 523 00:20:39,471 --> 00:20:41,273 IT'S TEMPORAL, NOT JUST 524 00:20:41,340 --> 00:20:42,274 GEOGRAPHIC, IT'S TEMPORAL. 525 00:20:42,341 --> 00:20:44,977 I'VE BEEN FASTING THIS MORNING, 526 00:20:45,043 --> 00:20:54,586 MY LYMPH NODES AND MESENTERY IS 527 00:20:54,653 --> 00:20:55,954 DIFFERENT THAN MY LUNCH AND 528 00:20:56,021 --> 00:20:57,356 AFTER EATING AT THE AIRPORT 529 00:20:57,422 --> 00:20:57,789 LATER. 530 00:20:57,856 --> 00:20:58,890 THERE'S ALSO THIS TEMPORAL 531 00:20:58,957 --> 00:20:59,391 COMPONENT. 532 00:20:59,458 --> 00:21:04,129 WE HAVE TO BE OPEN AND AS WE'RE 533 00:21:04,196 --> 00:21:05,397 HAVING THIS REALIZING 534 00:21:05,464 --> 00:21:06,498 COMPLICATIONS WE'RE SETTING 535 00:21:06,565 --> 00:21:07,566 FORWARD THIS RESEARCH PLAN. 536 00:21:07,633 --> 00:21:10,168 NEXT SLIDE PLEASE. 537 00:21:10,235 --> 00:21:13,772 SO, BACK TO WHAT WE'RE TRYING TO 538 00:21:13,839 --> 00:21:15,674 ACCOMPLISH, WE WANT TO DEVELOP 539 00:21:15,741 --> 00:21:17,009 PERMANENT RESEARCH ENTITY TO 540 00:21:17,075 --> 00:21:18,176 EXECUTE A RESEARCH ROADMAP. 541 00:21:18,243 --> 00:21:23,849 NEXT SLIDE. 542 00:21:23,915 --> 00:21:25,717 WHAT THE ENTITY OR ENTITIES NEED 543 00:21:25,784 --> 00:21:28,754 TO DO, WE NEED TO BE ABLE TO 544 00:21:28,820 --> 00:21:31,056 HOLD THAT ENTITY ACCOUNTABLE 545 00:21:31,123 --> 00:21:34,660 INTO THE FUTURE SO WE CAN VERIFY 546 00:21:34,726 --> 00:21:36,461 IT'S ACTUALLY EXECUTING RESEARCH 547 00:21:36,528 --> 00:21:37,663 PLAN AND DRIVING THINGS FORWARD 548 00:21:37,729 --> 00:21:38,764 AS WE HOPE. 549 00:21:38,830 --> 00:21:40,699 AND THEN WE ALSO NEED TO HAVE IT 550 00:21:40,766 --> 00:21:44,069 BE ABLE TO MANAGE SORT OF 551 00:21:44,136 --> 00:21:44,703 RESEARCH INFRASTRUCTURE THAT 552 00:21:44,770 --> 00:21:46,805 NEEDS TO BE DEVELOPED, SHARED 553 00:21:46,872 --> 00:21:48,140 RESOURCES THAT ARE CURRENTLY 554 00:21:48,206 --> 00:21:49,741 LACKING IN OUR FIELD. 555 00:21:49,808 --> 00:21:53,779 THINGS, AGAIN, LIKE PATIENT 556 00:21:53,845 --> 00:21:54,546 REPOSITORIES AND PATIENT 557 00:21:54,613 --> 00:21:56,948 REGISTRIES AS WELL. 558 00:21:57,015 --> 00:21:58,383 SO NEXT SLIDE. 559 00:21:58,450 --> 00:22:03,155 SO SORT OF OUR SHORT-TERM 560 00:22:03,221 --> 00:22:05,290 LEARNING PLANS NEED TO BE 561 00:22:05,357 --> 00:22:07,025 UNDERSTANDING WHAT DIFFERENT 562 00:22:07,092 --> 00:22:09,261 STRUCTURES MIGHT NEED TO BE FOR 563 00:22:09,327 --> 00:22:11,430 CREATING A PERMANENT PRESENCE AT 564 00:22:11,496 --> 00:22:12,564 NIH TO SUPPORT LYMPHATIC 565 00:22:12,631 --> 00:22:15,333 RESEARCH, WHETHER AT A DIVISION, 566 00:22:15,400 --> 00:22:16,668 WITHIN AN INSTITUTE, IN A 567 00:22:16,735 --> 00:22:19,938 CENTER, SO LOOKING FOR WARD TO 568 00:22:20,005 --> 00:22:21,473 PRESENTATIONS LATER TODAY, SLEEP 569 00:22:21,540 --> 00:22:23,575 CENTER, HOW EFFECTIVE THEY HAVE 570 00:22:23,642 --> 00:22:27,345 BEEN DRIVING SLEEP RESEARCH 571 00:22:27,412 --> 00:22:29,047 FORWARD, POTENTIALLY THINKING AT 572 00:22:29,114 --> 00:22:30,582 INSTITUTE LEVEL, THINKING ABOUT 573 00:22:30,649 --> 00:22:33,952 VASCULAR DISEASES THAT ARE SORT 574 00:22:34,019 --> 00:22:38,757 OF SOMEWHAT ORPHANED AMONGST THE 575 00:22:38,824 --> 00:22:40,859 NIH, ANEURYSMS, BLOOD VESSEL 576 00:22:40,926 --> 00:22:43,028 DISORDERS THAT GET LOST AS WELL, 577 00:22:43,095 --> 00:22:45,363 THERE'S A NEED FOR 578 00:22:45,430 --> 00:22:46,565 INSTITUTE-LEVEL AT THAT. 579 00:22:46,631 --> 00:22:48,500 WE NEED TO UNDERSTAND AS A 580 00:22:48,567 --> 00:22:49,935 COMMISSION HOW SUCCESS IS 581 00:22:50,001 --> 00:22:52,804 MEASURED THEY NIH, HOW THESE 582 00:22:52,871 --> 00:22:54,539 DIFFERENT ENTITIES AND LEADERS 583 00:22:54,606 --> 00:22:55,741 ARE HELD ACCOUNTABLE BECAUSE WE 584 00:22:55,807 --> 00:22:57,843 NEED TO THINK ABOUT THOSE THINGS 585 00:22:57,909 --> 00:22:59,711 AS WE DEVELOP THIS PLAN. 586 00:22:59,778 --> 00:23:02,447 WE NEED TO EXPLORE WHAT 587 00:23:02,514 --> 00:23:05,383 RESOURCES ARE NEEDED. 588 00:23:05,450 --> 00:23:06,918 AGAIN, REGISTRIES, THINGS WE 589 00:23:06,985 --> 00:23:08,653 KNOW BUT ARE REALLY THOUGHTFUL 590 00:23:08,720 --> 00:23:11,056 PROCESS IN TERMS OF THINKING 591 00:23:11,123 --> 00:23:14,526 ABOUT WHAT OTHER RESOURCES 592 00:23:14,593 --> 00:23:14,926 RESHARE. 593 00:23:14,993 --> 00:23:16,428 NEXT SLIDE. 594 00:23:16,495 --> 00:23:17,863 THE OTHER PIECE IS THE RESEARCH 595 00:23:17,929 --> 00:23:18,597 ROAD MAP. 596 00:23:18,663 --> 00:23:20,799 WE WANT THIS TO SET FORTH A 597 00:23:20,866 --> 00:23:22,234 VISION THAT'S NEAR TERM AND 598 00:23:22,300 --> 00:23:24,569 URGENT, THINGS WE NEED TO BE 599 00:23:24,636 --> 00:23:28,573 DOING NOW, AS WELL AS BEING ABLE 600 00:23:28,640 --> 00:23:29,875 TO SET FORTH VISION FOR THE 601 00:23:29,941 --> 00:23:31,643 THINGS WE DON'T KNOW WE'RE GOING 602 00:23:31,710 --> 00:23:33,411 TO DISCOVER AND BE ABLE TO 603 00:23:33,478 --> 00:23:34,880 CONTINUE TO DRIVE THAT FORWARD. 604 00:23:34,946 --> 00:23:40,218 WITH THAT WE WANT TO HAVE 605 00:23:40,285 --> 00:23:41,419 SOMETHING MEASURABLE, MILESTONES 606 00:23:41,486 --> 00:23:44,890 TO MEET, THAT ACCOUNTABILITY 607 00:23:44,956 --> 00:23:45,724 PIECE. 608 00:23:45,791 --> 00:23:46,725 NEXT SLIDE. 609 00:23:46,792 --> 00:23:47,959 THESE THINGS ARE THINGS WE'VE 610 00:23:48,026 --> 00:23:49,594 BEEN DISCUSSING, THIS IS WHERE 611 00:23:49,661 --> 00:23:52,764 SCIENTISTS WANTED TO JUMP IN 612 00:23:52,831 --> 00:23:55,167 RIGHT AWAY, IDENTIFY GAPS IN 613 00:23:55,233 --> 00:23:55,867 FUNDAMENTAL SCIENCE, WHAT 614 00:23:55,934 --> 00:23:57,369 DISCOVERIES HAVE BEEN MADE IN 615 00:23:57,435 --> 00:23:59,337 THE LAST DECADE READY FOR 616 00:23:59,404 --> 00:24:00,639 TRANSLATION TO THE CLINIC. 617 00:24:00,705 --> 00:24:06,478 LOTS OF BEAUTIFUL WORK STUDYING 618 00:24:06,545 --> 00:24:16,087 PROCESS INVOLVED IN LYMPHEDEMA, 619 00:24:16,154 --> 00:24:17,622 THINGS TRANSLATING TO THE CLINIC 620 00:24:17,689 --> 00:24:20,025 TO MAKE IT MORE UNIVERSALLY 621 00:24:20,091 --> 00:24:22,294 AVAILABLE TO THE HEALTH CARE 622 00:24:22,360 --> 00:24:22,594 SYSTEM. 623 00:24:22,661 --> 00:24:26,398 WE NEED TO HAVE A DISCUSSION 624 00:24:26,464 --> 00:24:27,966 ABOUT WHAT GAPS AND CLINICAL 625 00:24:28,033 --> 00:24:31,770 NEEDS ARE FOR TREATMENT AND 626 00:24:31,837 --> 00:24:33,939 CLINICAL DIAGNOSIS AND WHAT 627 00:24:34,005 --> 00:24:36,908 LYMPHATIC DISEASE MEANS AND 628 00:24:36,975 --> 00:24:41,179 NCLD, HOW ARE WE DEFINING 629 00:24:41,246 --> 00:24:43,481 LYMPHATIC DISEASE, A DISCUSSION 630 00:24:43,548 --> 00:24:45,050 WE STILL NEED TO HAVE. 631 00:24:45,116 --> 00:24:48,186 BARRIERS THAT MIGHT STOP US? 632 00:24:48,253 --> 00:24:49,487 WE MIGHT RESISTANCE AMONG NIH 633 00:24:49,554 --> 00:24:51,122 AND GOVERNMENT AGENCIES ON 634 00:24:51,189 --> 00:24:52,591 WILLINGNESS TO CONSIDER AND 635 00:24:52,657 --> 00:24:57,329 IMPLEMENT NEW STRUCTURES AND NEW 636 00:24:57,395 --> 00:24:59,497 ENTITIES,I THINK ONE 637 00:24:59,564 --> 00:25:00,398 COMPLICATIONS BY DEFINITION 638 00:25:00,465 --> 00:25:02,434 LYMPHATIC RESEARCH SPANS MANY 639 00:25:02,500 --> 00:25:04,836 INSTITUTES, IT HAS A HOME IN 640 00:25:04,903 --> 00:25:07,239 NHLBI BUT WE KNOW LOOKING FROM 641 00:25:07,305 --> 00:25:12,043 THE SLIDES FROM GUILLERMO'S 642 00:25:12,110 --> 00:25:15,113 REVIEW THIS IS TOUCHING MANY 643 00:25:15,180 --> 00:25:17,082 ORGAN SYSTEMS AND INSTITUTE AS 644 00:25:17,148 --> 00:25:21,152 WELL, OBVIOUSLY WORK IN CANCER, 645 00:25:21,219 --> 00:25:25,223 HEART LUNG BLOOD, NIDDK HAS A 646 00:25:25,290 --> 00:25:27,158 STAKE AND HOW THE CNS WORKS, 647 00:25:27,225 --> 00:25:28,693 THERE'S THINGS TO THINK ABOUT IN 648 00:25:28,760 --> 00:25:31,196 TERMS OF HOW TO WORK ACROSS 649 00:25:31,263 --> 00:25:32,631 INSTITUTES, AND THERE MIGHT BE 650 00:25:32,697 --> 00:25:34,099 ISSUES WITHIN THE NIH AND US 651 00:25:34,165 --> 00:25:35,467 BEING ABLE TO DO THAT. 652 00:25:35,533 --> 00:25:41,506 WE NEED TO LEARN THESE THINGS, 653 00:25:41,573 --> 00:25:45,710 WE MAY HAVE INABILITY TO AFFECT 654 00:25:45,777 --> 00:25:48,513 KEY DECISION WORKERS, THIS TIES 655 00:25:48,580 --> 00:25:51,216 TO THE BULLET POINT OF LACK OF 656 00:25:51,283 --> 00:25:52,250 RECOGNITION IN THE MEDICAL 657 00:25:52,317 --> 00:25:55,854 RESEARCH COMMUNITY IN GENERAL 658 00:25:55,921 --> 00:25:58,924 ABOUT IMPORTANCE OF LYMPHATICS 659 00:25:58,990 --> 00:26:00,392 COMPOUNDED BY COMPLEXITY AND 660 00:26:00,458 --> 00:26:01,393 INABILITY SOMETIMES TO DIAGNOSE 661 00:26:01,459 --> 00:26:04,095 AND LACK OF TREATMENTS FOR MANY 662 00:26:04,162 --> 00:26:06,932 OF THE DISEASES SENDS US ON A 663 00:26:06,998 --> 00:26:08,033 CYCLE OF PEOPLE BECOMING LESS 664 00:26:08,099 --> 00:26:09,434 INTERESTED WHEN THEY DON'T HAVE 665 00:26:09,501 --> 00:26:11,636 SOLUTIONS TO PROVIDE TO THE 666 00:26:11,703 --> 00:26:12,103 PATIENTS. 667 00:26:12,170 --> 00:26:13,271 NEXT SLIDE. 668 00:26:13,338 --> 00:26:15,273 JUST QUICKLY GOING OVER THE NEXT 669 00:26:15,340 --> 00:26:17,509 STEPS, ACTION PLANS, WE HAVE A 670 00:26:17,575 --> 00:26:18,443 BIG COMMITTEE. 671 00:26:18,510 --> 00:26:21,479 WE HAVE THESE TWO SECTIONS SO 672 00:26:21,546 --> 00:26:24,883 MAYBE WE SHOULD BE DIVIDING AND 673 00:26:24,950 --> 00:26:28,186 CONFERRING, HAVING SOME PEOPLE 674 00:26:28,253 --> 00:26:29,821 THINKING ABOUT THE ENTITY, SOME 675 00:26:29,888 --> 00:26:31,656 PEOPLE WORKING ON THE RESEARCH 676 00:26:31,723 --> 00:26:32,057 ROADMAP. 677 00:26:32,123 --> 00:26:35,060 LOOKING FORWARD TO HEARING FROM 678 00:26:35,126 --> 00:26:36,995 THE SLEEP CENTER TODAY MAYBE 679 00:26:37,062 --> 00:26:39,230 ASKING FOR PORTFOLIO ANALYSIS OF 680 00:26:39,297 --> 00:26:42,434 WHAT SLEEP RESEARCH WAS LIKE PRE 681 00:26:42,500 --> 00:26:43,501 THE CENTER BEING ESTABLISH AND 682 00:26:43,568 --> 00:26:48,773 POST TO SEE HOW EFFECTIVE IT'S 683 00:26:48,840 --> 00:26:50,342 BEEN AND LOOK AT THEIR SUCCESSES 684 00:26:50,408 --> 00:26:56,214 AND HOW THEY HAVE DONE THAT, 685 00:26:56,281 --> 00:26:57,248 CONTINUE TO INTERVIEW 686 00:26:57,315 --> 00:26:58,917 STAKEHOLDERS. 687 00:26:58,984 --> 00:26:59,217 NEXT SLIDE. 688 00:26:59,284 --> 00:27:01,086 A LONGER-TERM VIEW OF THE NEXT 689 00:27:01,152 --> 00:27:04,189 YEAR AND REALLY IT'S AGAIN 690 00:27:04,255 --> 00:27:07,859 IDENTIFYING THE GAPS IN CLINICAL 691 00:27:07,926 --> 00:27:09,160 MEDICINE, SCIENTIFIC MEDICINE, 692 00:27:09,227 --> 00:27:10,795 BUILDING AND DRAFTING THE 693 00:27:10,862 --> 00:27:11,963 RESEARCH ROADMAP AND DRAFTING 694 00:27:12,030 --> 00:27:13,665 POTENTIAL IDEAS FOR STRUCTURES 695 00:27:13,732 --> 00:27:16,134 OF THESE ENTITIES IN THE NIH. 696 00:27:16,201 --> 00:27:17,635 I THINK I'LL LEAVE IT THERE AND 697 00:27:17,702 --> 00:27:28,246 MAYBE WE CAN OPEN THE FLOOR TO 698 00:27:37,689 --> 00:27:38,623 DISCUSSION. 699 00:27:38,690 --> 00:27:44,029 I'LL OPEN THIS AND WE'LL 700 00:27:44,095 --> 00:27:45,697 TRANSITION TO BUILDS. 701 00:27:45,764 --> 00:27:47,265 ANY COMMENTS? 702 00:27:47,332 --> 00:27:48,833 >> I'D LIKE TO UNDERSCORE, 703 00:27:48,900 --> 00:27:50,368 TALKING ABOUT THIS ELEMENT OF 704 00:27:50,435 --> 00:27:52,504 PERMANENT STRUCTURE THAT WOULD 705 00:27:52,570 --> 00:27:53,872 HELP TO ORCHESTRATE THIS, I 706 00:27:53,938 --> 00:27:58,576 THINK ONE OF THE THINGS I WOULD 707 00:27:58,643 --> 00:28:00,011 PROPOSE WE NEED TO EXPLORE TO 708 00:28:00,078 --> 00:28:02,313 INDIVIDUALS WHO WILL TALK TO US 709 00:28:02,380 --> 00:28:06,351 LATER TODAY, THE SLEEP CENTER 710 00:28:06,418 --> 00:28:07,318 EXPERIENCE IS -- CERTAINLY THEY 711 00:28:07,385 --> 00:28:10,855 CAN HELP TO IDENTIFY FOR US 712 00:28:10,922 --> 00:28:12,390 GAINS THEY PERCEIVE IN HAVING 713 00:28:12,457 --> 00:28:13,691 DONE THIS BUT WE WANT TO KNOW 714 00:28:13,758 --> 00:28:14,993 SOMETHING ABOUT THE ROAD NOT 715 00:28:15,060 --> 00:28:18,730 TAKEN, WHAT WAS GIVEN UP BY 716 00:28:18,797 --> 00:28:21,399 GOING THIS CENTER, WHAT DO WE 717 00:28:21,466 --> 00:28:23,301 LOSE IF WE CODIFY SOMETHING TOE 718 00:28:23,368 --> 00:28:30,408 THAT DEGREE, THAT WOULD BE MY 719 00:28:30,475 --> 00:28:32,911 PROPOSAL, MAYBE WE CAN EXPLORE 720 00:28:32,977 --> 00:28:33,111 THAT. 721 00:28:33,178 --> 00:28:34,746 >> BUILDING ON THAT NOT JUST 722 00:28:34,813 --> 00:28:36,214 WHAT DID THEY GET UP BUT WHAT 723 00:28:36,281 --> 00:28:39,050 HAS BEEN THE COST, WHAT DOESN'T 724 00:28:39,117 --> 00:28:41,886 GO WELL, WHAT IS THE REAL DOWN 725 00:28:41,953 --> 00:28:42,954 SIDE, THE EXPERIENCED DOWN SIDE 726 00:28:43,021 --> 00:28:45,290 OF DOING IT THAT WAY VERSUS -- 727 00:28:45,356 --> 00:28:50,829 AND WHAT OTHER STRUCTURES DID 728 00:28:50,895 --> 00:28:52,263 THEY EXPLORE, YEAH. 729 00:28:52,330 --> 00:28:55,867 I THINK FROM MY PERSPECTIVE IN 730 00:28:55,934 --> 00:28:59,471 THE FIELD, I REPRESENT THE 731 00:28:59,537 --> 00:29:00,738 CNS/ALZHEIMER'S SPACE, SEEMS 732 00:29:00,805 --> 00:29:02,474 LIKE THERE'S -- THERE WILL HAVE 733 00:29:02,540 --> 00:29:05,410 TO BE OR SEEMS LIKE THERE WILL 734 00:29:05,477 --> 00:29:08,012 HAVE TO BE AN INEVITABLE 735 00:29:08,079 --> 00:29:11,049 TRADEOFF BETWEEN INTENSE FOCUS 736 00:29:11,116 --> 00:29:14,085 AND LEVERAGE ON CORE LYMPHATICS 737 00:29:14,152 --> 00:29:17,355 DISEASES AS CURRENTLY UNDERSTOOD 738 00:29:17,422 --> 00:29:21,025 VERSUS OPENING TO INCLUDE THINGS 739 00:29:21,092 --> 00:29:23,027 TO SEEM TO BE IMPACTED BY 740 00:29:23,094 --> 00:29:27,165 LYMPHATIC FUNCTION OR 741 00:29:27,232 --> 00:29:29,901 DYSFUNCTION EXTENDING TO 742 00:29:29,968 --> 00:29:30,935 VIRTUALLY EVERY PSYCHIATRIC OR 743 00:29:31,002 --> 00:29:32,270 PSYCHIATRIC DISORDER THERE IS. 744 00:29:32,337 --> 00:29:33,538 THAT OPENS THE TENT AND BRINGS 745 00:29:33,605 --> 00:29:36,774 IN A LOT OF INTEREST, YOU WILL 746 00:29:36,841 --> 00:29:38,209 ALSO LOSE LEVERAGE BECAUSE YOU 747 00:29:38,276 --> 00:29:40,378 BRING IN SO MANY STAKEHOLDERS, 748 00:29:40,445 --> 00:29:43,181 SO I THINK HOW THAT GETS 749 00:29:43,248 --> 00:29:45,650 BALANCED WILL BE AN IMPORTANT 750 00:29:45,717 --> 00:29:45,884 THING. 751 00:29:45,950 --> 00:29:47,986 I DON'T OFFER ANY SOLUTION TO 752 00:29:48,052 --> 00:29:49,921 THAT WHATSOEVER. 753 00:29:49,988 --> 00:29:51,823 >> I WOULD HOPE THAT WE COULD 754 00:29:51,890 --> 00:29:53,691 TURN THAT NEGATIVE INTO A 755 00:29:53,758 --> 00:29:54,926 POSITIVE BECAUSE IT SEEMS LIKE 756 00:29:54,993 --> 00:29:57,028 THERE'S SO MANY PEOPLE IMPACTED 757 00:29:57,095 --> 00:29:58,897 BY LYMPHATICS ONE WAY OR ANOTHER 758 00:29:58,963 --> 00:29:59,898 WITH THE DISEASES THEY ENCOUNTER 759 00:29:59,964 --> 00:30:02,300 THAT IF WE COULD FIGURE OUT WAYS 760 00:30:02,367 --> 00:30:04,068 IN WHICH TO PULL THEM INTO THE 761 00:30:04,135 --> 00:30:06,971 TENT AND GET THEM TO WORK WITH 762 00:30:07,038 --> 00:30:08,606 US THAT WOULD BE WONDERFUL. 763 00:30:08,673 --> 00:30:10,375 I HAVE NO ANSWER FOR THAT 764 00:30:10,441 --> 00:30:13,244 EITHER. 765 00:30:13,311 --> 00:30:16,214 >> YEAH, SO RELATED TO THAT, I 766 00:30:16,281 --> 00:30:18,149 THINK THIS IS -- I'VE BEEN IN 767 00:30:18,216 --> 00:30:19,517 THIS FIELD FOR OVER 25 YEARS AND 768 00:30:19,584 --> 00:30:23,488 I THINK THIS IS AN AMAZING 769 00:30:23,555 --> 00:30:24,556 OPPORTUNITY TO REALLY BROADEN 770 00:30:24,622 --> 00:30:27,458 THE FIELD. 771 00:30:27,525 --> 00:30:31,196 AND JUST INCLUDE -- MAKE IT 772 00:30:31,262 --> 00:30:34,465 COMPLICATED, I AGREE, BUT TO 773 00:30:34,532 --> 00:30:36,267 INCLUDE AND REACH PEOPLE IN 774 00:30:36,334 --> 00:30:38,436 DIFFERENT AREAS THAT LYMPHATICS 775 00:30:38,503 --> 00:30:39,704 COULD BE HIGH, SOME OF THOSE 776 00:30:39,771 --> 00:30:40,638 DISORDERS HAVE NEVER BEEN 777 00:30:40,705 --> 00:30:41,506 CONSIDERED BEFORE. 778 00:30:41,573 --> 00:30:44,776 THAT WOULD GIVE US MORE LEVERAGE 779 00:30:44,842 --> 00:30:46,844 EVENTUALLY AS SOMEONE SAID TO 780 00:30:46,911 --> 00:30:47,612 INCLUDE OTHER INSTITUTES TO 781 00:30:47,679 --> 00:30:48,813 PARTICIPATE INTO THAT. 782 00:30:48,880 --> 00:30:55,787 BUT I THINK FOR ME THE MAJOR 783 00:30:55,853 --> 00:30:57,388 ASPECT IS THE TEACHING, THE 784 00:30:57,455 --> 00:30:58,189 MEDICAL SCHOOL, ABOUT 785 00:30:58,256 --> 00:30:58,556 LYMPHATICS. 786 00:30:58,623 --> 00:31:00,291 I THINK THERE'S A BIG IGNORANCE 787 00:31:00,358 --> 00:31:01,526 ABOUT IT. 788 00:31:01,593 --> 00:31:03,061 MOST CLINICIANS, I'M NOT ONE, 789 00:31:03,127 --> 00:31:04,696 BUT MOST CLINICIANS IF YOU TALK 790 00:31:04,762 --> 00:31:09,234 TO THEM, FOR THEM IT'S JUST 791 00:31:09,300 --> 00:31:11,603 LYMPHEDEMA OR METASTASIS, THAT'S 792 00:31:11,669 --> 00:31:11,769 IT. 793 00:31:11,836 --> 00:31:13,838 AND ONE MAJOR ACCOMPLISH. 794 00:31:13,905 --> 00:31:16,207 WE BELIEVE EVENTUALLY WE NEED TO 795 00:31:16,274 --> 00:31:18,977 MODERNIZE TEXT BOOKS FOR MEDICAL 796 00:31:19,043 --> 00:31:20,712 SCHOOL AND SOMEONE NEEDS TO 797 00:31:20,778 --> 00:31:23,781 TEACH MEDICAL STUDENTS ABOUT IT 798 00:31:23,848 --> 00:31:26,251 AND POTENTIAL BEHIND 799 00:31:26,317 --> 00:31:26,751 CARDIOVASCULAR DISEASE, 800 00:31:26,818 --> 00:31:31,155 NEUROLOGICAL DISEASE, THERE IS 801 00:31:31,222 --> 00:31:31,956 AN UNDERLYING LYMPHATIC 802 00:31:32,023 --> 00:31:32,824 MALFUNCTION ASPECT. 803 00:31:32,890 --> 00:31:34,492 FOR ME JUST DOING THAT WOULD BE 804 00:31:34,559 --> 00:31:35,293 A MAJOR ACCOMPLISHMENT. 805 00:31:35,360 --> 00:31:40,164 MANY OF US HAVE BEEN TRYING TO 806 00:31:40,231 --> 00:31:42,300 BRING THIS FACT AND HAS BEEN NOT 807 00:31:42,367 --> 00:31:45,870 EASY SO FAR. 808 00:31:45,937 --> 00:31:47,538 SO THAT'S IT. 809 00:31:47,605 --> 00:31:49,641 >> I'D LIKE TO HOPE TO COMMENTS 810 00:31:49,707 --> 00:31:51,542 ABOUT BUILDS FOR THIS COMMITTEE, 811 00:31:51,609 --> 00:31:54,145 ANYTHING YOU'D LIKE TO SEE THEM 812 00:31:54,212 --> 00:31:56,281 DOING DIFFERENTLY OR IN ADDITION 813 00:31:56,347 --> 00:32:02,387 TO WHAT WE HAVE PLANNED? 814 00:32:02,520 --> 00:32:03,955 >> SO I JUST WANT TO SAY THE 815 00:32:04,022 --> 00:32:05,723 PAST FEW DAYS I'VE BEEN THINKING 816 00:32:05,790 --> 00:32:09,627 A LOT ABOUT NUTRITION AND HOW 817 00:32:09,694 --> 00:32:10,962 NUTRITION IMPACTS LYMPHATIC 818 00:32:11,029 --> 00:32:12,964 DISEASE, AND I THINK HAS WE 819 00:32:13,031 --> 00:32:15,633 THINK ABOUT THIS ROADMAP THAT'S 820 00:32:15,700 --> 00:32:17,535 CREATED, THAT THAT'S A PART OF 821 00:32:17,602 --> 00:32:17,869 IT. 822 00:32:17,935 --> 00:32:19,404 AND ALSO A PART OF LIKE I'VE 823 00:32:19,470 --> 00:32:20,938 BEEN DOING A LITTLE RESEARCH AND 824 00:32:21,005 --> 00:32:23,675 SEEING HOW MUCH INFORMATION IS 825 00:32:23,741 --> 00:32:26,577 OUT THERE ON LYMPHATIC DISEASE 826 00:32:26,644 --> 00:32:28,379 AND NUTRITION AND HOW NUTRITION 827 00:32:28,446 --> 00:32:30,248 IMPACTS THAT. 828 00:32:30,315 --> 00:32:31,416 SO I THINK THAT'S A CRITICAL 829 00:32:31,482 --> 00:32:36,587 ELEMENT THAT NEEDS TO BE ADDED, 830 00:32:36,654 --> 00:32:38,523 THE SCIENTIFIC ADVANCEMENT AND 831 00:32:38,589 --> 00:32:41,392 PATIENT TOOLS END AS WELL. 832 00:32:41,459 --> 00:32:42,827 >> THANK YOU FOR THAT. 833 00:32:42,894 --> 00:32:46,464 OTHER THOUGHTS? 834 00:32:46,531 --> 00:32:47,332 I'M SEEING NONE. 835 00:32:47,398 --> 00:32:50,268 I'D LOVE TO HAVE A CONVERSATION 836 00:32:50,335 --> 00:32:51,336 ABOUT SOME CONNECTION POINTS, 837 00:32:51,402 --> 00:32:52,670 MAYBE YOU HEARD IN THAT. 838 00:32:52,737 --> 00:32:55,173 WE HEARD A LITTLE BIT OF 839 00:32:55,239 --> 00:32:55,973 CONNECTION BETWEEN POINT BETWEEN 840 00:32:56,040 --> 00:32:57,475 COMMITTEE AND THE THIRD PARTY 841 00:32:57,542 --> 00:32:59,777 COVERAGE COMMITTEE. 842 00:32:59,844 --> 00:33:01,279 THIS COMMITTEE EVEN ON THE 843 00:33:01,346 --> 00:33:02,280 COMMUNITY GROWTH COMMITTEE, I'D 844 00:33:02,347 --> 00:33:04,582 LOVE TO HEAR FROM YOU AS WE 845 00:33:04,649 --> 00:33:05,717 LISTEN WHAT CONNECTIONS DID YOU 846 00:33:05,783 --> 00:33:07,385 HEAR BETWEEN THIS COMMITTEE AND 847 00:33:07,452 --> 00:33:12,724 YOUR OWN WORK? 848 00:33:12,790 --> 00:33:16,394 >> WELL, I'D JUST ADD THAT 849 00:33:16,461 --> 00:33:25,903 EMBEDDED IN THAT I KEPT -- 850 00:33:25,970 --> 00:33:29,207 [ NO AUDIO ] 851 00:33:29,273 --> 00:33:30,908 YOU KNOW, AGAIN AS WE BUILD OUT 852 00:33:30,975 --> 00:33:32,477 THE ROADMAP AND BUILD OUT SORT 853 00:33:32,543 --> 00:33:34,846 OF ENTITIES WHAT ARE SOME OF THE 854 00:33:34,912 --> 00:33:38,383 METRICS WE CAN USE, WHAT 855 00:33:38,449 --> 00:33:41,652 MILESTONES SHOULD BE INCLUDED. 856 00:33:41,719 --> 00:33:44,522 >> I THINK ALSO GUILLERMO 857 00:33:44,589 --> 00:33:47,325 ARTICULATED AN OVERLAP WITH THE 858 00:33:47,392 --> 00:33:49,227 EDUCATION IN TERMS OF IN ORDER 859 00:33:49,293 --> 00:33:51,429 TO BROADEN TENT PEOPLE NEED TO 860 00:33:51,496 --> 00:33:53,564 KNOW ABOUT LYMPHATIC FUNCTION 861 00:33:53,631 --> 00:33:55,133 AND DYSFUNCTION IN VARIOUS WAYS 862 00:33:55,199 --> 00:33:56,467 INCLUDING MEDICAL SCHOOL, IN THE 863 00:33:56,534 --> 00:33:59,170 LEX TON HOW PEOPLE THINK ABOUT 864 00:33:59,237 --> 00:34:01,472 HUMAN DISEASE SO I SEE AN 865 00:34:01,539 --> 00:34:02,173 OBVIOUS GROUND-LEVEL OVERLAP 866 00:34:02,240 --> 00:34:05,443 WITH EDUCATION COMMITTEE AS 867 00:34:05,510 --> 00:34:10,515 WELL. 868 00:34:13,451 --> 00:34:21,793 >> ONE INFERENTIAL COMMENT THAT 869 00:34:21,859 --> 00:34:23,895 TIES THINGS TOGETHER IS THAT 870 00:34:23,961 --> 00:34:26,731 AMONG SCIENTIFIC TRAINEES TODAY 871 00:34:26,798 --> 00:34:32,003 ONE HEARS THERE'S A 872 00:34:32,069 --> 00:34:33,971 DISINCENTIVIZATION TO ENTER THE 873 00:34:34,038 --> 00:34:34,972 TASTE BECAUSE OF PERCEPTION 874 00:34:35,039 --> 00:34:37,408 FUNDING MAY NOT BE AS ROBUST FOR 875 00:34:37,475 --> 00:34:39,043 THIS WORK AS OTHER AREAS. 876 00:34:39,110 --> 00:34:40,678 SO PERHAPS WE NEED TO THINK 877 00:34:40,745 --> 00:34:43,981 ABOUT THAT AS A PROBLEM, HOW DO 878 00:34:44,048 --> 00:34:46,350 WE OVERCOME PERCEPTION OF THE 879 00:34:46,417 --> 00:34:47,885 LACK OF INCENTIVE OR CREATE 880 00:34:47,952 --> 00:34:49,287 INCENTIVES IN ORDER TO ENTER 881 00:34:49,353 --> 00:34:51,522 THIS SPACE BECAUSE I KNOW WE ALL 882 00:34:51,589 --> 00:34:53,391 KNOW THERE ARE MANY 883 00:34:53,458 --> 00:34:54,592 EXCEPTIONALLY TRAINED SCIENTISTS 884 00:34:54,659 --> 00:34:56,994 THAT COULD DRIVE THIS FORWARD IF 885 00:34:57,061 --> 00:34:58,396 THEY SIMPLY CHOSE TO DEVELOP 886 00:34:58,463 --> 00:35:08,005 THEIR EFFORTS TO THE PROBLEMS AT 887 00:35:08,072 --> 00:35:08,206 HAND. 888 00:35:08,272 --> 00:35:11,976 >> I WANT TO FOLLOW IN THE 889 00:35:12,043 --> 00:35:13,277 POLITICALLY CORRECT EXPRESSION, 890 00:35:13,344 --> 00:35:15,480 FUNDING IS NOT A WORD NIH LIKES 891 00:35:15,546 --> 00:35:16,914 TO USE. 892 00:35:16,981 --> 00:35:19,417 YES, THAT'S A MAJOR OBSTACLE ON 893 00:35:19,484 --> 00:35:22,787 THESE BECAUSE WE ARE COMPETING 894 00:35:22,854 --> 00:35:26,390 WITH EVERY OTHER TOPIC THAT YOU 895 00:35:26,457 --> 00:35:27,859 CAN IMAGINE, AND ALTHOUGH OUR 896 00:35:27,925 --> 00:35:30,995 COMMUNITY HAS GROWN WHEN WE 897 00:35:31,062 --> 00:35:32,430 STARTED WITH THE FIRST 898 00:35:32,497 --> 00:35:35,299 CONFERENCE 20 YEARS AGO THAT WE 899 00:35:35,366 --> 00:35:43,274 DIDN'T FEEL THE NUMBER NEEDED TO 900 00:35:43,341 --> 00:35:44,008 CONTINUE. 901 00:35:44,075 --> 00:35:45,176 NOW THEY ARE OVERSUBSCRIBED. 902 00:35:45,243 --> 00:35:46,777 STILL THERE'S A VERY LIMITED 903 00:35:46,844 --> 00:35:47,778 NUMBER OF INVESTIGATORS. 904 00:35:47,845 --> 00:35:48,846 EVEN NOW WITH THIS COMMISSION 905 00:35:48,913 --> 00:35:51,482 I'VE BEEN TALKING IN MEETINGS 906 00:35:51,549 --> 00:35:52,884 AND WITH COLLEAGUES, AND A LOT 907 00:35:52,950 --> 00:35:54,252 OF PEOPLE SHOW INTEREST ON WHAT 908 00:35:54,318 --> 00:35:57,321 THEY ARE DOING TO EXPAND INTO 909 00:35:57,388 --> 00:35:58,723 LYMPHATICS BUT THE FIRST 910 00:35:58,789 --> 00:36:01,759 QUESTION IS THE MONEY. 911 00:36:01,826 --> 00:36:02,727 UNFORTUNATELY, I SAID, NO, 912 00:36:02,793 --> 00:36:04,061 THERE'S AN INTEREST BUT THERE IS 913 00:36:04,128 --> 00:36:05,062 NO MORE MONEY. 914 00:36:05,129 --> 00:36:07,598 AND I THINK IF WE WANT TO 915 00:36:07,665 --> 00:36:10,067 ATTRACT MORE PEOPLE, I THINK WE 916 00:36:10,134 --> 00:36:14,605 NEED TO FIND A WAY TO MAKE IT 917 00:36:14,672 --> 00:36:15,106 MORE. 918 00:36:15,172 --> 00:36:16,741 THERE IS MORE FUNDING AVAILABLE 919 00:36:16,807 --> 00:36:19,443 FOR THIS TOPIC IN PARTICULAR. 920 00:36:19,510 --> 00:36:22,113 AND I HAVEN'T SEEN THIS CHANGE 921 00:36:22,179 --> 00:36:24,215 SINCE I'M WRITING GRANTS IN THIS 922 00:36:24,282 --> 00:36:28,152 TOPIC, HASN'T CHANGED AT ALL. 923 00:36:28,219 --> 00:36:29,687 THERE'S INTEREST, ENTHUSIASM, 924 00:36:29,754 --> 00:36:31,455 PROGRESS, BUT NOT REFLECTED IN 925 00:36:31,522 --> 00:36:32,890 THE FUNDING THAT IS PROVIDED TO 926 00:36:32,957 --> 00:36:36,060 US. 927 00:36:36,127 --> 00:36:38,663 >> I WONDER IF THERE ISN'T A WAY 928 00:36:38,729 --> 00:36:40,097 TO SORT OF NOT REALLY REDIRECT 929 00:36:40,164 --> 00:36:41,065 FUNDING BUT TO JUST INTEREST 930 00:36:41,132 --> 00:36:43,401 SOME OF THE OTHER GROUPS. 931 00:36:43,467 --> 00:36:45,903 FOR EXAMPLE, 20% OF AMERICANS 932 00:36:45,970 --> 00:36:48,573 HAVE CHRONIC VENOUS DISEASE, 933 00:36:48,639 --> 00:36:50,274 THAT'S A SHOCKING, THAT'S ONE IN 934 00:36:50,341 --> 00:36:50,808 FIVE. 935 00:36:50,875 --> 00:36:52,276 THE PEOPLE WORKING ON VENOUS 936 00:36:52,343 --> 00:36:55,680 DISEASE IF WE COULD ATTRACT THEM 937 00:36:55,746 --> 00:36:57,715 OVER TO USE THE FUNDING THEY 938 00:36:57,782 --> 00:36:59,116 HAVE INTO LYMPHATICS THEY ALL 939 00:36:59,183 --> 00:37:02,720 HAVE, ACCORDING TO MY COLLEAGUE 940 00:37:02,787 --> 00:37:06,791 WHO HAS IMAGED THEM, THEY ALL 941 00:37:06,857 --> 00:37:08,326 HAVE A STAGNANT LYMPH, CHRONIC 942 00:37:08,392 --> 00:37:09,427 VENOUS DISEASE, HOW CAN WE 943 00:37:09,493 --> 00:37:10,962 ATTRACT THOSE PEOPLE TO USE THE 944 00:37:11,028 --> 00:37:13,064 FUNDING THAT IS AVAILABLE TO 945 00:37:13,130 --> 00:37:17,034 THEM TO LOOK AT LYMPHATICS? 946 00:37:21,472 --> 00:37:22,473 >> YEAH, TWO POINTS THAT CONNECT 947 00:37:22,540 --> 00:37:24,508 WITH MY TWO COMMITTEES. 948 00:37:24,575 --> 00:37:25,843 I'M IN THE MEASURABLE RESULTS 949 00:37:25,910 --> 00:37:27,712 COMMITTEE SO THE QUESTION FOR 950 00:37:27,778 --> 00:37:30,314 THE SLEEP CENTER IS HOW DO THEY 951 00:37:30,381 --> 00:37:32,183 MEASURE RESULTS, HOW DO THIS 952 00:37:32,250 --> 00:37:34,218 ACTUALLY -- I LIKE WHAT YOU 953 00:37:34,285 --> 00:37:36,554 ASKED, HAVE YOU -- ASKING THOSE 954 00:37:36,621 --> 00:37:37,989 INDIVIDUALS, HOW DO THEY MOVE 955 00:37:38,055 --> 00:37:38,990 THE DIAL, AND MY QUESTION WOULD 956 00:37:39,056 --> 00:37:42,493 BE HOW DO YOU KNOW THAT YOU 957 00:37:42,560 --> 00:37:44,996 MOVED THE DIAL, AND WHAT ARE 958 00:37:45,062 --> 00:37:47,465 YOUR APPROACHES TO MEASURING 959 00:37:47,531 --> 00:37:49,266 THAT DON'T INCLUDE JUST MILLIONS 960 00:37:49,333 --> 00:37:53,437 OF DOLLARS OF FUNDING BOUGH AT 961 00:37:53,504 --> 00:37:55,840 BECAUSE IT MAY NOT TRANSLATE 962 00:37:55,906 --> 00:37:56,907 INTO IMPROVING ANY SITUATION. 963 00:37:56,974 --> 00:37:58,142 THAT'S THE QUESTION I HAVE. 964 00:37:58,209 --> 00:38:01,078 I'M ALSO ON COMMUNITY GROWTH AND 965 00:38:01,145 --> 00:38:03,414 MY PERSPECTIVE IS SCIENTIFIC 966 00:38:03,481 --> 00:38:05,683 COMMUNITY GROWTH, I WONDER HOW 967 00:38:05,750 --> 00:38:07,284 MUCH -- IT'S MY IMPRESSION 968 00:38:07,351 --> 00:38:08,986 LYMPHATIC WORK TENDS TO LIVE IN 969 00:38:09,053 --> 00:38:13,224 NHLBI, IS THAT A TRUE STATEMENT? 970 00:38:13,290 --> 00:38:16,060 >> NOT NECESSARILY. 971 00:38:16,127 --> 00:38:16,327 >> OKAY. 972 00:38:16,394 --> 00:38:17,228 >> IT'S DISTRIBUTED. 973 00:38:17,294 --> 00:38:19,764 >> SO MAYBE A SOLUTION FOR 974 00:38:19,830 --> 00:38:20,264 FUNDING PROBLEM. 975 00:38:20,331 --> 00:38:22,667 SO I LIVE IN THE ALZHEIMER'S 976 00:38:22,733 --> 00:38:25,136 SPACE WITH A CLEAR 977 00:38:25,202 --> 00:38:28,005 CONGRESSIONALLY MANDATED FUNDING 978 00:38:28,072 --> 00:38:29,840 MANDATE, RIGHT? 979 00:38:29,907 --> 00:38:31,308 IF ALZHEIMER'S DISEASE WAS 980 00:38:31,375 --> 00:38:32,576 LYMPHATIC DISEASE, THERE'S AN 981 00:38:32,643 --> 00:38:34,979 ADULT TO CONNECT TO THAT 982 00:38:35,046 --> 00:38:35,880 MANDATE, RIGHT? 983 00:38:35,946 --> 00:38:36,947 THAT BY ALIGNING WITH THOSE 984 00:38:37,014 --> 00:38:41,018 OTHER TYPES OF PRIORITIES AND IF 985 00:38:41,085 --> 00:38:43,220 IT'S TRUE LYMPHATIC FUNCTION 986 00:38:43,287 --> 00:38:46,057 AFFECTS ALL OF THESE THAT 987 00:38:46,123 --> 00:38:47,892 ALIGNMENT CAN BE USEFUL, 988 00:38:47,958 --> 00:38:50,695 POLITICAL COSTS I WONDER IS 989 00:38:50,761 --> 00:38:52,463 WOULD NIA APPRECIATE THAT? 990 00:38:52,530 --> 00:38:54,999 WOULD NINDS APPRECIATE THAT? 991 00:38:55,066 --> 00:38:56,967 AND OUT OF THAT WORK INSIDE NIH 992 00:38:57,034 --> 00:39:00,705 WHEN YOU THINK ABOUT DIVIDING UP 993 00:39:00,771 --> 00:39:05,176 THOSE POTS AND HAVING A 994 00:39:05,242 --> 00:39:07,044 CONSTITUENCY SORT OF TRYING TO 995 00:39:07,111 --> 00:39:08,012 AGITATE FOR ME. 996 00:39:08,079 --> 00:39:09,880 >> IF I CAN ANSWER ONE BRIEF 997 00:39:09,947 --> 00:39:13,350 QUESTION YOU ASKED, BECAUSE WE 998 00:39:13,417 --> 00:39:15,319 DID DO PORTFOLIO ANALYSIS IN -- 999 00:39:15,386 --> 00:39:18,122 TWO YEARS AGO, AND THERE ARE 11 1000 00:39:18,189 --> 00:39:20,324 NIH INSTITUTES THAT HAVE 1001 00:39:20,391 --> 00:39:24,462 LYMPHATIC RESEARCH IN THEIR 1002 00:39:24,528 --> 00:39:24,729 PORTFOLIO. 1003 00:39:24,795 --> 00:39:27,998 THE LARGEST FUND OF MONEY IS 1004 00:39:28,065 --> 00:39:30,534 SPEND IN NHLBI AND NCI, JUST TO 1005 00:39:30,601 --> 00:39:33,304 LET YOU KNOW. 1006 00:39:33,370 --> 00:39:35,639 >> THANK YOU SO MUCH. 1007 00:39:35,706 --> 00:39:37,742 I WANT TO SORT OF PUT THE 1008 00:39:37,808 --> 00:39:39,710 DISCLAIMER, I'M NOT A MEMBER OF 1009 00:39:39,777 --> 00:39:42,113 THE COMMISSION BUT I'M PART OF 1010 00:39:42,179 --> 00:39:44,615 THE LARGE GROUP THAT'S 1011 00:39:44,682 --> 00:39:48,252 SUPPORTING, HAS BEEN SUPPORTING 1012 00:39:48,319 --> 00:39:50,788 LYMPHATIC RESEARCH AT THE NIH 1013 00:39:50,855 --> 00:39:52,089 FOR MANY YEARS. 1014 00:39:52,156 --> 00:39:59,630 I'VE BEEN CHAIR OF THE TRANS-NIH 1015 00:39:59,697 --> 00:40:00,197 COORDINATION. 1016 00:40:00,264 --> 00:40:03,801 SELEN IS ACTING ALSO AS 1017 00:40:03,868 --> 00:40:05,202 EXECUTIVE SECRETARY. 1018 00:40:05,269 --> 00:40:06,637 BUT I'VE BEEN LEADING THIS FOR 1019 00:40:06,704 --> 00:40:08,038 MANY YEARS NOW. 1020 00:40:08,105 --> 00:40:10,674 I WOULD SAY PROBABLY FIVE OR 1021 00:40:10,741 --> 00:40:11,108 SIX. 1022 00:40:11,175 --> 00:40:14,845 AND THE COMMITTEE IS WORKING 1023 00:40:14,912 --> 00:40:16,714 TOGETHER WITH ALL THE INSTITUTES 1024 00:40:16,781 --> 00:40:18,215 THAT HAVE LYMPHATIC RESEARCH. 1025 00:40:18,282 --> 00:40:21,485 WE HAVE IDENTIFIED AND RECRUITED 1026 00:40:21,552 --> 00:40:25,222 ALL THE INSTITUTES THROUGH THEIR 1027 00:40:25,289 --> 00:40:27,091 REPRESENTATIVES, AND THE 1028 00:40:27,158 --> 00:40:28,492 IMPRESSION THAT LYMPHATIC 1029 00:40:28,559 --> 00:40:34,465 RESEARCH LIVES AT THE NHLBI IS 1030 00:40:34,532 --> 00:40:37,601 BASED I THINK, FIRST IN REALITY, 1031 00:40:37,668 --> 00:40:38,135 SECOND IN POTENTIALLY 1032 00:40:38,202 --> 00:40:40,204 PERCEPTION, SO WE DO HAVE A VERY 1033 00:40:40,271 --> 00:40:42,406 LARGE INVESTMENT AMONG THE NIH 1034 00:40:42,473 --> 00:40:44,074 INSTITUTES IN LYMPHATIC 1035 00:40:44,141 --> 00:40:44,341 RESEARCH. 1036 00:40:44,408 --> 00:40:45,943 WE SUPPORT RESEARCH THAT IS 1037 00:40:46,010 --> 00:40:48,579 RELATED TO THE NORMAL FUNCTION 1038 00:40:48,646 --> 00:40:52,783 OF THE LYMPHATIC DISEASE WORLD 1039 00:40:52,850 --> 00:40:56,320 MAYBE, INCLUDING IN THE BRAIN, 1040 00:40:56,387 --> 00:40:59,156 AS WELL AS VARIOUS CONDITIONS 1041 00:40:59,223 --> 00:41:00,925 THAT DON'T FALL SQUARELY WITHIN 1042 00:41:00,991 --> 00:41:01,792 OTHER INSTITUTES. 1043 00:41:01,859 --> 00:41:04,094 SO WHAT WE'RE TRYING TO DO IS 1044 00:41:04,161 --> 00:41:06,197 BRING TOGETHER EVERYONE. 1045 00:41:06,263 --> 00:41:08,499 SELEN SUGGESTED WE ALREADY DID 1046 00:41:08,566 --> 00:41:10,401 PORTFOLIO ANALYSIS, AND THIS 1047 00:41:10,467 --> 00:41:14,371 TOPIC SUCH AS MANY OTHER TOPICS 1048 00:41:14,438 --> 00:41:18,042 FALL SORT OF WITHIN THE NIH 1049 00:41:18,108 --> 00:41:21,579 PHILOSOPHY OF LETTING THE PEER 1050 00:41:21,645 --> 00:41:22,947 REVIEW SYSTEM PICK THE BEST 1051 00:41:23,013 --> 00:41:23,614 PROPOSALS. 1052 00:41:23,681 --> 00:41:27,918 WE DID NOT FIND ANY KIND OF 1053 00:41:27,985 --> 00:41:29,320 DIFFERENCE. 1054 00:41:29,386 --> 00:41:32,256 IN FACT, WE THROUGH OUR EFFORTS 1055 00:41:32,323 --> 00:41:33,657 FOUND THE LYMPHATIC RESEARCHERS 1056 00:41:33,724 --> 00:41:37,494 HAVE A BETTER CHANCE OF GETTING 1057 00:41:37,561 --> 00:41:40,965 FUNDED THAN OTHER BUT THERE'S NO 1058 00:41:41,031 --> 00:41:42,766 SET ASIDE AND THAT'S TRUE FOR A 1059 00:41:42,833 --> 00:41:44,735 LOT OF OTHER THINGS. 1060 00:41:44,802 --> 00:41:46,704 I LEAD THE VASCULAR AND 1061 00:41:46,770 --> 00:41:47,571 HYPERTENSION BRANCH. 1062 00:41:47,638 --> 00:41:50,975 AS YOU CAN IMAGINE, WE COVER THE 1063 00:41:51,041 --> 00:41:52,243 VASCULATURE, BLOOD AND 1064 00:41:52,309 --> 00:41:58,015 LYMPHATIC, FROM HEAD TO TOE 1065 00:41:58,082 --> 00:41:58,649 LITERALLY. 1066 00:41:58,716 --> 00:41:59,750 BRAIN VASCULATURE, WE COVER 1067 00:41:59,817 --> 00:42:01,285 EVERY ORGAN WHEN IT'S NORMAL. 1068 00:42:01,352 --> 00:42:03,888 WHEN IT'S ABNORMAL IN SOME CASES 1069 00:42:03,954 --> 00:42:07,324 IF IT'S DUE, SAY, TO 1070 00:42:07,391 --> 00:42:08,926 HYPERTENSION OR DIRECT KNOWLEDGE 1071 00:42:08,993 --> 00:42:10,227 OF VASCULAR DISEASES BUT THEN 1072 00:42:10,294 --> 00:42:12,663 AGAIN IT GOES TO OTHER 1073 00:42:12,730 --> 00:42:13,464 INSTITUTES. 1074 00:42:13,530 --> 00:42:15,966 THAT'S HOW THE NIH IS BUILT. 1075 00:42:16,033 --> 00:42:17,401 WE'VE BEEN TRYING TO CLOSE THE 1076 00:42:17,468 --> 00:42:19,770 GAP ALL THE TIME. 1077 00:42:19,837 --> 00:42:21,205 THAT'S ENOUGH ABOUT SAYING THIS, 1078 00:42:21,272 --> 00:42:23,140 WE WILL BE HAPPY TO PRESENT THE 1079 00:42:23,207 --> 00:42:24,775 REPORT IF THAT'S SOMETHING THE 1080 00:42:24,842 --> 00:42:25,976 COMMISSION WOULD LIKE. 1081 00:42:26,043 --> 00:42:31,048 WE PRESENTED THIS IN A COUPLE OF 1082 00:42:31,115 --> 00:42:32,783 MEETINGS, WE CAN REFRESH IT AND 1083 00:42:32,850 --> 00:42:33,083 PRESENT IT. 1084 00:42:33,150 --> 00:42:35,185 BUT I DO HAVE A QUESTION FOR THE 1085 00:42:35,252 --> 00:42:36,186 SCIENTIFIC COMMITTEE, AND MAYBE 1086 00:42:36,253 --> 00:42:39,990 IT WILL BE ADDRESSED BY OTHER 1087 00:42:40,057 --> 00:42:40,758 WORKING GROUPS. 1088 00:42:40,824 --> 00:42:43,594 AND MY QUESTION IS, WHEN YOU 1089 00:42:43,661 --> 00:42:46,563 LOOK AT LYMPHATIC OR HOW WE CAN 1090 00:42:46,630 --> 00:42:49,199 TRULY CONQUER LET'S SAY THE 1091 00:42:49,266 --> 00:42:50,601 CHALLENGE OF LYMPHATIC DISEASES 1092 00:42:50,668 --> 00:42:53,437 WHICH IS TRUE FOR PROBABLY ANY 1093 00:42:53,504 --> 00:42:54,738 OTHER DISEASE, WE'RE LOOKING AT 1094 00:42:54,805 --> 00:42:56,774 TRANSLATION THAT GOES TO MANY, 1095 00:42:56,840 --> 00:42:58,375 MANY DIFFERENT STEPS. 1096 00:42:58,442 --> 00:43:01,412 AND IT GOES WELL BEYOND THE NIH. 1097 00:43:01,478 --> 00:43:03,080 AND EVEN IF YOU FIGURE OUT 1098 00:43:03,147 --> 00:43:05,215 EVERYTHING THEN YOU STILL HAVE 1099 00:43:05,282 --> 00:43:06,884 TO PUT IT, YOU KNOW, ON THE 1100 00:43:06,951 --> 00:43:08,452 RECORD AND HAVE IT REIMBURSED 1101 00:43:08,519 --> 00:43:09,420 AND ALL THAT. 1102 00:43:09,486 --> 00:43:14,124 BUT FROM THE POINT OF VIEW OF 1103 00:43:14,191 --> 00:43:14,959 THE SCIENTIFIC COMMITTEE, I 1104 00:43:15,025 --> 00:43:16,894 DON'T KNOW, I MIGHT HAVE MISSED, 1105 00:43:16,961 --> 00:43:19,463 BUT ONE GOAL WOULD BE TO FIGURE 1106 00:43:19,530 --> 00:43:27,371 OUT WHAT IS NEEDED TO DIAGNOSE 1107 00:43:27,438 --> 00:43:29,640 THIS, THE VARIOUS ASPECTS OF 1108 00:43:29,707 --> 00:43:32,476 LYMPHATIC DISEASES SO THEY CAN 1109 00:43:32,543 --> 00:43:34,345 ACTUALLY BE IDENTIFIED IN 1110 00:43:34,411 --> 00:43:38,349 PATIENTS AND THEY'D BE 1111 00:43:38,415 --> 00:43:39,583 RECOGNIZED FOR REIMBURSEMENT AND 1112 00:43:39,650 --> 00:43:41,485 SO FORTH. 1113 00:43:41,552 --> 00:43:42,987 THIS GOES WELL BEYOND THE NIH, 1114 00:43:43,053 --> 00:43:45,622 BUT WHAT THE NIH CAN DOT THE 1115 00:43:45,689 --> 00:43:48,592 FIRST PART, UNDERSTANDING THE 1116 00:43:48,659 --> 00:43:49,660 SCIENCE AND SCIENTIFIC EVIDENCE 1117 00:43:49,727 --> 00:43:53,630 THAT IS NEEDED IN ORDER TO PUSH 1118 00:43:53,697 --> 00:43:55,132 THE FIELD. 1119 00:43:55,199 --> 00:44:00,070 >> THANK YOU FOR THOSE COMMENTS. 1120 00:44:00,137 --> 00:44:01,238 WE AGREE. 1121 00:44:01,305 --> 00:44:02,906 WE'VE ALWAYS INCLUDED DIAGNOSIS 1122 00:44:02,973 --> 00:44:04,742 AND TREATMENT AS SORT OF THE END 1123 00:44:04,808 --> 00:44:05,109 GOALS. 1124 00:44:05,175 --> 00:44:07,277 WE HAVE TO BE ABLE TO IDENTIFY 1125 00:44:07,344 --> 00:44:09,813 THE PATIENTS AND EFFICIENTLY 1126 00:44:09,880 --> 00:44:12,082 DIAGNOSE THEM. 1127 00:44:12,149 --> 00:44:15,819 THERE'S NO -- MOST INSTITUTIONS 1128 00:44:15,886 --> 00:44:17,621 CAN'T JUST ORDER A LYMPHATIC 1129 00:44:17,688 --> 00:44:20,758 TEST TO FIGURE OUT, YOU KNOW, IF 1130 00:44:20,824 --> 00:44:22,659 THERE'S SOME LYMPHATIC DISORDER. 1131 00:44:22,726 --> 00:44:26,430 TECHNOLOGY EXISTS BUT THEY ARE 1132 00:44:26,497 --> 00:44:27,998 IN SPECIALIZED CENTERS. 1133 00:44:28,065 --> 00:44:30,367 WE'VE BEEN TALKING ABOUT HOW YOU 1134 00:44:30,434 --> 00:44:31,668 CREATE SOMETHING WIDELY 1135 00:44:31,735 --> 00:44:33,103 AVAILABLE IN DIAGNOSIS AND THEN 1136 00:44:33,170 --> 00:44:35,039 ALSO ON THE TREATMENTS. 1137 00:44:35,105 --> 00:44:38,375 YOU KNOW, LISTENING TO THIS I 1138 00:44:38,442 --> 00:44:40,077 COME BACK, THIS IS DISCUSSION 1139 00:44:40,144 --> 00:44:45,015 STAN AND I HAD, THERE'S A FIELD 1140 00:44:45,082 --> 00:44:46,817 OF LYMPHATIC MEDICINE, IT'S 1141 00:44:46,884 --> 00:44:48,786 STARTING, IT'S STARTED, IT 1142 00:44:48,852 --> 00:44:52,256 EXISTS BUT IT'S SMALL IN 1143 00:44:52,322 --> 00:44:54,491 SPECIALIZED PLACES. 1144 00:44:54,558 --> 00:44:59,463 ITS PURVIEW IS LIMIT IN SCOPE, 1145 00:44:59,530 --> 00:45:03,667 IN THE LAST DECADE WE'VE BEEN 1146 00:45:03,734 --> 00:45:03,934 LEARNING. 1147 00:45:04,001 --> 00:45:09,373 I THINK ABOUT THE OPPORTUNITY OF 1148 00:45:09,440 --> 00:45:10,441 THE COMMISSION ON LYMPHATICS, 1149 00:45:10,507 --> 00:45:12,976 LYMPHATIC DISEASES, HOW DO WE 1150 00:45:13,043 --> 00:45:14,211 CREATE THE FIELD WHICH INCLUDES 1151 00:45:14,278 --> 00:45:16,380 DIAGNOSIS AND TREATMENT AND 1152 00:45:16,447 --> 00:45:17,681 COULD WOULD HAVE LYMPHATIC 1153 00:45:17,748 --> 00:45:19,049 DISEASESES DEFINED NOW AND ALL 1154 00:45:19,116 --> 00:45:21,618 THAT GARBLE AT THE END OF OUR 1155 00:45:21,685 --> 00:45:23,353 VISION STATEMENT, ALL THESE 1156 00:45:23,420 --> 00:45:26,423 DISEASES LYMPHATICS ARE PLAYING 1157 00:45:26,490 --> 00:45:29,393 A ROLE IN WE HAVEN'T FIGURED OUT 1158 00:45:29,460 --> 00:45:33,130 HOW YET, SO SOMETHING IMPROVING 1159 00:45:33,197 --> 00:45:34,431 LYMPHATIC FUNCTION, LYMPHEDEMA 1160 00:45:34,498 --> 00:45:35,933 MIGHT BE IMPROVING LYMPHATIC 1161 00:45:35,999 --> 00:45:37,267 FUNCTION TO HELP CLEARANCE IN 1162 00:45:37,334 --> 00:45:39,136 THE BRAIN FOR DEMENTIA AFTER TBI 1163 00:45:39,203 --> 00:45:43,640 SO I THINK ALL THAT COMING 1164 00:45:43,707 --> 00:45:44,608 TOGETHER, YES, IT'S RESEARCH 1165 00:45:44,675 --> 00:45:46,610 BASED BUT THE BASIC SCIENCE HAS 1166 00:45:46,677 --> 00:45:49,580 TO BE DONE TO ALLOW ALL THOSE 1167 00:45:49,646 --> 00:45:51,048 TRANSLATIONAL THINGS TO HAPPEN 1168 00:45:51,115 --> 00:45:51,648 NEXT. 1169 00:45:51,715 --> 00:45:54,051 BUT I DON'T THINK -- WHEN YOU 1170 00:45:54,118 --> 00:45:55,486 SEE SOME OTHER COMMITTEES THERE 1171 00:45:55,552 --> 00:45:57,020 IS THAT TRANSLATIONAL HOW DO WE 1172 00:45:57,087 --> 00:45:59,156 GET THIS OUT IN THE WORLD AND 1173 00:45:59,223 --> 00:46:01,058 YOU'RE RIGHT, THAT MIGHT BE 1174 00:46:01,125 --> 00:46:02,226 BEYOND NIH, THAT'S SOMETHING AS 1175 00:46:02,292 --> 00:46:03,694 A COMMITTEE, THAT'S OUR 1176 00:46:03,760 --> 00:46:03,961 DILIGENCE. 1177 00:46:04,027 --> 00:46:06,497 WE HAVE TO FIGURE THAT OUT. 1178 00:46:06,563 --> 00:46:07,531 WHEN WE TALK ABOUT PERMANENT 1179 00:46:07,598 --> 00:46:08,465 RESEARCH INFRASTRUCTURE I THINK 1180 00:46:08,532 --> 00:46:13,737 NIH IS PART OF THAT BUT IT MIGHT 1181 00:46:13,804 --> 00:46:18,342 NOT ONLY BE NIH AS PART OF THAT 1182 00:46:18,408 --> 00:46:18,642 AS WELL. 1183 00:46:18,709 --> 00:46:21,311 >> SO, I'D LIKE TO PUT SOME 1184 00:46:21,378 --> 00:46:21,979 POSITIVE SPIN. 1185 00:46:22,045 --> 00:46:26,783 IN 20 YEARS IN THE LYMPHATIC 1186 00:46:26,850 --> 00:46:29,586 FIELD, RIGHT NOW REVOLUTION, 1187 00:46:29,653 --> 00:46:34,758 LOOK AT THIS COMMITTEE, DoD, 1188 00:46:34,825 --> 00:46:39,263 CDRN, AND MOST RECENTLY ARPA-H, 1189 00:46:39,329 --> 00:46:41,231 ANSWERING THE QUESTION ARPA-H IS 1190 00:46:41,298 --> 00:46:46,370 DESIGNED TO CREATE METHODS TO 1191 00:46:46,436 --> 00:46:52,075 IMAGE AND IT WILL BE 1192 00:46:52,142 --> 00:46:52,676 TRANSFORMATION. 1193 00:46:52,743 --> 00:46:53,944 IT'S UNDER THE RADAR, WE DON'T 1194 00:46:54,011 --> 00:47:01,251 SEE IT. 1195 00:47:01,318 --> 00:47:04,087 EVEN THE SMALLEST RUDIMENTARY 1196 00:47:04,154 --> 00:47:05,122 TECHNIQUES BROUGHT TREATMENT 1197 00:47:05,189 --> 00:47:06,089 OPPORTUNITIES AND UNDERSTANDING 1198 00:47:06,156 --> 00:47:11,428 WHAT'S GOING ON. 1199 00:47:11,495 --> 00:47:15,599 SO ARPA-H, IN ITS QUEST, ALL 1200 00:47:15,666 --> 00:47:21,705 THAT'S HAPPENING NOW IS BECAUSE 1201 00:47:21,772 --> 00:47:24,441 OF THIS EFFORT. 1202 00:47:24,508 --> 00:47:25,842 AND WE'RE HOPEFUL THAT WHAT 1203 00:47:25,909 --> 00:47:27,211 COMES FROM ARPA-H WILL BE 1204 00:47:27,277 --> 00:47:34,885 TREATMENT, WE DON'T KNOW. 1205 00:47:34,952 --> 00:47:36,820 ARPA-H WILL BE TRANSFORMATIONAL. 1206 00:47:36,887 --> 00:47:38,255 >> WE COULD ASK THE SLEEP 1207 00:47:38,322 --> 00:47:40,991 PEOPLE, THEY ESTABLISHED IN THE 1208 00:47:41,058 --> 00:47:42,526 '90s SLEEP DISORDERS 1209 00:47:42,593 --> 00:47:43,627 RESEARCH -- EXCUSE ME, 1210 00:47:43,694 --> 00:47:44,828 SPECIALIZED CENTERS OF RESEARCH 1211 00:47:44,895 --> 00:47:46,597 AND OTHER ENTITIES, IT WOULD BE 1212 00:47:46,663 --> 00:47:48,332 NICE TO GET FEEDBACK HOW TO EACH 1213 00:47:48,398 --> 00:47:49,900 OF THOSE ENTITIES WORKED OR 1214 00:47:49,967 --> 00:47:52,502 DIDN'T WORK SO WE DON'T MAKE THE 1215 00:47:52,569 --> 00:47:54,104 SAME MISTAKE GOING FORWARD. 1216 00:47:54,171 --> 00:47:55,639 >> IF I CAN REMIND, JUST TO LET 1217 00:47:55,706 --> 00:47:57,407 YOU KNOW IN YOUR AGENDA YOU'RE 1218 00:47:57,474 --> 00:47:59,876 GOING TO HAVE THE PEOPLE WHO 1219 00:47:59,943 --> 00:48:01,245 WILL BE ANSWERING THOSE 1220 00:48:01,311 --> 00:48:03,547 QUESTIONS SPECIFICALLY JUST TO 1221 00:48:03,614 --> 00:48:07,584 LET YOU KNOW. 1222 00:48:07,651 --> 00:48:09,319 >> YEAH, JUST TO FOLLOW MAX, 1223 00:48:09,386 --> 00:48:12,689 WHAT YOU WERE SAYING, YES, 1224 00:48:12,756 --> 00:48:14,291 OBVIOUSLY DIAGNOSIS IS EXTREMELY 1225 00:48:14,358 --> 00:48:16,393 IMPORTANT AND IT'S BECOMING A 1226 00:48:16,460 --> 00:48:19,463 REALITY AT LEAST IN SYMPTOMATIC 1227 00:48:19,529 --> 00:48:20,631 LYMPHATIC DISEASES. 1228 00:48:20,697 --> 00:48:21,865 LET'S BE CLEAR. 1229 00:48:21,932 --> 00:48:27,971 THE PROBLEM WHAT WE HAVE IS THAT 1230 00:48:28,038 --> 00:48:30,340 SOMEONE MAY HAVE CARDIAC 1231 00:48:30,407 --> 00:48:39,349 PROBLEM, NO OBVIOUS LYMPHATIC 1232 00:48:39,416 --> 00:48:42,619 DECONDITION, WE NEED SOME 1233 00:48:42,686 --> 00:48:44,921 METHODS TO HAVE KIND OF 1234 00:48:44,988 --> 00:48:45,922 BIOMARKERS WHERE WE'VE BEEN 1235 00:48:45,989 --> 00:48:49,159 TRYING FOR A WHILE AND I THINK 1236 00:48:49,226 --> 00:48:55,032 SOME METHOD THAT'S NOT SO 1237 00:48:55,098 --> 00:48:55,866 INVASIVE WHEN THE PHYSICIAN 1238 00:48:55,932 --> 00:48:58,935 DOESN'T HAVE ANY CLUE WHAT IS 1239 00:48:59,002 --> 00:49:00,170 THE UNDERLYING CONDITION THEY 1240 00:49:00,237 --> 00:49:02,105 MAY THINK, OKAY, MAYBE IT'S 1241 00:49:02,172 --> 00:49:03,540 LYMPHATIC BUT THEY NEED TO FIND 1242 00:49:03,607 --> 00:49:06,610 A WAY TO DETERMINE IT IS A 1243 00:49:06,677 --> 00:49:07,911 LYMPHATIC CONDITION THAT'S 1244 00:49:07,978 --> 00:49:09,579 HAPPENING. 1245 00:49:09,646 --> 00:49:10,213 IN THE NON-SYMPTOMATIC 1246 00:49:10,280 --> 00:49:12,716 SITUATIONS THAT THE TEAM WAS 1247 00:49:12,783 --> 00:49:14,885 PRESENTING, THAT'S NOT EASY TO 1248 00:49:14,951 --> 00:49:15,886 CONVINCE HEALTH INSURANCE 1249 00:49:15,952 --> 00:49:17,854 PROVIDER OR PATIENT EVEN LET'S 1250 00:49:17,921 --> 00:49:20,090 SEE IF LYMPHATICS ARE THE ONES 1251 00:49:20,157 --> 00:49:21,591 IMPACTED INTO THAT. 1252 00:49:21,658 --> 00:49:25,862 THAT'S WHY I ALSO BELIEVE THAT 1253 00:49:25,929 --> 00:49:27,230 GETTING CLINICIANS TOGETHER 1254 00:49:27,297 --> 00:49:29,900 PARTICULARLY THOSE THAT ARE 1255 00:49:29,966 --> 00:49:32,102 SEEING PATIENTS WITH LYMPHATIC 1256 00:49:32,169 --> 00:49:35,172 CONDITION MAKE A REAL AS LARGE 1257 00:49:35,238 --> 00:49:39,643 AS POSSIBLE DATABASE, WHAT 1258 00:49:39,710 --> 00:49:40,544 ASSOCIATED DISEASES OR 1259 00:49:40,610 --> 00:49:42,846 MALFUNCTIONS THESE PATIENTS 1260 00:49:42,913 --> 00:49:43,880 HAVE. 1261 00:49:43,947 --> 00:49:48,652 SO SOMEONE THAT HAS LYMPHEDEMA, 1262 00:49:48,719 --> 00:49:50,554 THAT ALSO HAS CARDIOVASCULAR, 1263 00:49:50,620 --> 00:49:51,621 OBESITY, ALZHEIMER'S, YOU NAME 1264 00:49:51,688 --> 00:49:54,057 IT, A WAY TO PROVE AND JUSTIFY 1265 00:49:54,124 --> 00:49:57,627 THE IDEA THAT BEYOND THESE 1266 00:49:57,694 --> 00:49:58,662 LYMPHATIC MALFUNCTIONS THERE IS 1267 00:49:58,729 --> 00:50:00,397 OTHER DISEASES ASSOCIATED WITH 1268 00:50:00,464 --> 00:50:00,831 THAT. 1269 00:50:00,897 --> 00:50:05,535 I THINK CLINICIANS ARE THE ONES 1270 00:50:05,602 --> 00:50:06,903 THAT CAN PROVIDE THAT 1271 00:50:06,970 --> 00:50:08,305 INFORMATION, BECAUSE THEY HAVE 1272 00:50:08,372 --> 00:50:08,839 IT. 1273 00:50:08,905 --> 00:50:11,975 THEY ALREADY HAVE IT. 1274 00:50:12,042 --> 00:50:14,578 AND STAN HAS PUBLISHED THAT. 1275 00:50:14,644 --> 00:50:16,279 I DON'T KNOW HOW MANY 1276 00:50:16,346 --> 00:50:17,781 PUBLICATIONS, A NUMBER OF 1277 00:50:17,848 --> 00:50:19,516 ASSOCIATED DISORDERS IN PATIENTS 1278 00:50:19,583 --> 00:50:21,852 WITH THE DISEASE. 1279 00:50:21,918 --> 00:50:25,989 >> GUILLERMO, YOU'VE BRINGING UP 1280 00:50:26,056 --> 00:50:26,990 THE OVERLAP. 1281 00:50:27,057 --> 00:50:33,096 EVEN IF THERE WAS A PERFECT 1282 00:50:33,163 --> 00:50:34,731 BIOMARKER TEST IT'S ONLY AS GOOD 1283 00:50:34,798 --> 00:50:36,400 AS THE CLINICIAN TO ORDER IT. 1284 00:50:36,466 --> 00:50:37,501 THEY GO HAND IN HIT. 1285 00:50:37,567 --> 00:50:41,338 WE HAVE TO GET THE WORD OUT. 1286 00:50:41,405 --> 00:50:48,445 >> SO WHEN I GIVE A TALK AT MY 1287 00:50:48,512 --> 00:50:53,383 INSTITUTION, WHAT PATIENT SAID 1288 00:50:53,450 --> 00:50:55,619 TO YOU. 1289 00:50:55,685 --> 00:51:03,693 YOU HAVE NO IDEA WHAT'S GOING 1290 00:51:03,760 --> 00:51:03,894 ON. 1291 00:51:03,960 --> 00:51:07,831 >> WHAT STARTS? 1292 00:51:07,898 --> 00:51:09,199 >> EVERY MONTH, TWO MONTHS, WE 1293 00:51:09,266 --> 00:51:10,901 HAVE THIS TYPE OF SITUATION AND 1294 00:51:10,967 --> 00:51:11,902 WE CAN HELP. 1295 00:51:11,968 --> 00:51:13,637 >> WE'RE GOING TO NEED TO MOVE 1296 00:51:13,703 --> 00:51:16,072 TO THE NEXT COMMITTEE REPORT. 1297 00:51:16,139 --> 00:51:17,841 I'M GOING TO MAKE ONE FINAL 1298 00:51:17,908 --> 00:51:18,375 COMMENT. 1299 00:51:18,442 --> 00:51:21,845 I WANT TO GO BACK TO THE WHOLE 1300 00:51:21,912 --> 00:51:23,313 QUESTION OF THE FUNDING 1301 00:51:23,380 --> 00:51:24,347 RESOURCES WITHIN THE NIH ITSELF 1302 00:51:24,414 --> 00:51:26,049 BUT I THINK IT'S VERY 1303 00:51:26,116 --> 00:51:29,419 ENCOURAGING TO HEAR THAT THE 1304 00:51:29,486 --> 00:51:30,287 PORTFOLIO ANALYSIS LOOKS 1305 00:51:30,353 --> 00:51:32,689 POSITIVE, AND THAT THE FUNDING 1306 00:51:32,756 --> 00:51:35,625 IS DISTRIBUTED ACROSS THE 1307 00:51:35,692 --> 00:51:38,929 I.C.s, BUT I THINK SUBSIDIARY 1308 00:51:38,995 --> 00:51:41,898 QUESTION HARDER TO ANSWER BUT 1309 00:51:41,965 --> 00:51:43,200 BEGS ATTENTION, WHAT IS THE 1310 00:51:43,266 --> 00:51:44,167 PROPORTIONALITY, IF WE'RE 1311 00:51:44,234 --> 00:51:46,269 SITTING HERE SAYING THE WHOLE 1312 00:51:46,336 --> 00:51:49,873 UNIVERSE OF HUMAN DISEASE IS 1313 00:51:49,940 --> 00:51:52,375 IMPACTED BY LYMPHATIC DISEASE OR 1314 00:51:52,442 --> 00:51:54,244 LYMPHATICS MALFUNCTION WE'LL 1315 00:51:54,311 --> 00:51:56,346 CALL IT OR MALFORMATION, 1316 00:51:56,413 --> 00:51:57,981 WHATEVER IT MAY BE, IS THE 1317 00:51:58,048 --> 00:52:02,052 AMOUNT OF SHEER FUNDING THAT IS 1318 00:52:02,118 --> 00:52:03,553 DIRECTED IN THIS PATH, 1319 00:52:03,620 --> 00:52:06,890 PROPORTIONAL TO WHAT WE THINK 1320 00:52:06,957 --> 00:52:12,829 THE MAGNITUDE OF THE PROSECUTE 1321 00:52:12,896 --> 00:52:13,430 -- PROBLEM IS, PORTFOLIO 1322 00:52:13,497 --> 00:52:15,599 ANALYSIS COULD BE DONE IN OTHER 1323 00:52:15,665 --> 00:52:16,700 CUB U. SUBCATEGORIES, WHAT IS 1324 00:52:16,766 --> 00:52:18,568 THE PERCENTAGE HERE AND ARE WE 1325 00:52:18,635 --> 00:52:20,237 GETTING A FAIR ENOUGH SHARE OF 1326 00:52:20,303 --> 00:52:21,137 WHAT WE NEED. 1327 00:52:21,204 --> 00:52:24,174 I PUT THAT OUT FOR JUST GENERAL 1328 00:52:24,241 --> 00:52:24,674 REFLECTION. 1329 00:52:24,741 --> 00:52:25,909 >> THANK YOU, STAN. 1330 00:52:25,976 --> 00:52:26,476 GREAT DISCUSSION, EVERYONE. 1331 00:52:26,543 --> 00:52:33,016 I THINK WE'RE GOING TO MOVE TO 1332 00:52:33,083 --> 00:52:33,917 THE EDUCATIONAL IMPERATIVE 1333 00:52:33,984 --> 00:52:35,318 COMMITTEE. 1334 00:52:35,385 --> 00:52:37,387 WHILE THE PRESENTER TAKES THE 1335 00:52:37,454 --> 00:52:38,288 PODIUM I'LL RECAP. 1336 00:52:38,355 --> 00:52:40,257 IMPORTANT TO BE TALKING ABOUT 1337 00:52:40,323 --> 00:52:41,224 THE CONNECTIONS WE'RE HEAR 1338 00:52:41,291 --> 00:52:42,425 AMONGST THE GROUPS. 1339 00:52:42,492 --> 00:52:44,961 TWO THINGS FLAGGED FOR ME IN THE 1340 00:52:45,028 --> 00:52:46,129 LAST CONVERSATION THAT PROBABLY 1341 00:52:46,196 --> 00:52:48,231 IMPACT EVERY SINGLE GROUP, I ASK 1342 00:52:48,298 --> 00:52:49,599 THAT YOU TAKE THIS BACK TO YOUR 1343 00:52:49,666 --> 00:52:51,201 COMMITTEES AND TALK ABOUT 1344 00:52:51,268 --> 00:52:53,470 FUNDING, FOR ONE, RIGHT? 1345 00:52:53,537 --> 00:52:56,573 SO REGARDLESS OF WHETHER YOU'RE 1346 00:52:56,640 --> 00:52:58,542 ON A SCIENTIFIC ADVANCEMENT OR 1347 00:52:58,608 --> 00:52:59,376 PATIENT TOOLS COMMITTEE WHAT'S 1348 00:52:59,442 --> 00:53:00,944 REQUIRED AND WHAT'S THE FUNDING 1349 00:53:01,011 --> 00:53:02,112 IMPLICATION OF THAT. 1350 00:53:02,178 --> 00:53:03,880 THE OTHER ONE IS MAYBE A LITTLE 1351 00:53:03,947 --> 00:53:05,715 BIT MORE SUBTLE, WHICH IS THE 1352 00:53:05,782 --> 00:53:06,650 PERMANENT ENTITY. 1353 00:53:06,716 --> 00:53:09,119 SO IF WE DO DECIDE TO PURSUE 1354 00:53:09,185 --> 00:53:10,554 RECOMMENDING A PERMANENT ENTITY, 1355 00:53:10,620 --> 00:53:13,490 THAT CAN JUST BE FOCUSED ON 1356 00:53:13,557 --> 00:53:15,158 SCIENTIFIC ADVANCEMENT OR THAT 1357 00:53:15,225 --> 00:53:16,593 ENTITY CAN ALSO HAVE 1358 00:53:16,660 --> 00:53:17,427 ACCOUNTABILITY TOWARDS COMMUNITY 1359 00:53:17,494 --> 00:53:19,763 GROWTH AND PATIENT TOOLS AND 1360 00:53:19,829 --> 00:53:21,598 MEDICAL EDUCATION, SO START 1361 00:53:21,665 --> 00:53:24,334 THINKING ABOUT THAT IS THE 1362 00:53:24,401 --> 00:53:25,435 RECOMMENDATION WHAT YOUR 1363 00:53:25,502 --> 00:53:27,203 COMMITTEE NEED FROM THE 1364 00:53:27,270 --> 00:53:29,105 PERMANENT ENTITY AND WE CAN 1365 00:53:29,172 --> 00:53:35,845 DESIGN IT. 1366 00:53:35,912 --> 00:53:36,880 ALL RIGHT. 1367 00:53:36,947 --> 00:53:42,485 REBECCA TAKE US THROUGH THE WORK 1368 00:53:42,552 --> 00:53:43,486 OF THE EDUCATIONAL IMPERATIVES 1369 00:53:43,553 --> 00:53:43,787 COMMITTEE. 1370 00:53:43,853 --> 00:53:45,055 >> IT'S A PLEASURE TO HAVE THE 1371 00:53:45,121 --> 00:53:46,556 OPPORTUNITY TO PROVIDE UPDATES 1372 00:53:46,623 --> 00:53:51,728 ON BEHALF OF THE COMMITTEE. 1373 00:53:51,795 --> 00:53:53,330 >> CAN YOU INCREASE YOUR VOLUME 1374 00:53:53,396 --> 00:53:55,899 PLEASE? 1375 00:53:55,966 --> 00:53:56,533 >> SURE. 1376 00:53:56,600 --> 00:53:59,636 HOW ABOUT THAT? 1377 00:53:59,703 --> 00:54:00,170 IS THAT IMPROVED? 1378 00:54:00,236 --> 00:54:07,377 >> OUR AV TEAM IS WORKING. 1379 00:54:07,444 --> 00:54:09,346 ONE SECOND. 1380 00:54:09,412 --> 00:54:11,514 >> SURE. 1381 00:54:11,581 --> 00:54:12,182 >> TRY AGAIN PLEASE. 1382 00:54:12,248 --> 00:54:15,919 IS IT BETTER? 1383 00:54:15,986 --> 00:54:17,187 CAN EVERYONE HEAR? 1384 00:54:17,253 --> 00:54:19,189 REBECCA, IF YOU CAN PUT YOUR 1385 00:54:19,255 --> 00:54:21,725 CAMERA ON. 1386 00:54:21,791 --> 00:54:23,393 >> MY CAMERA IS ON. 1387 00:54:23,460 --> 00:54:29,065 >> CAN OUR A.V. TEAM SHOW -- WE 1388 00:54:29,132 --> 00:54:36,840 WANT TO SEE YOU, REBECCA. 1389 00:54:36,906 --> 00:54:38,408 >> EVEN SO IT'S SO BRIGHT AND 1390 00:54:38,475 --> 00:54:39,576 EARLY THERE. 1391 00:54:39,643 --> 00:54:40,243 >> THANK YOU. 1392 00:54:40,310 --> 00:54:41,111 I SEE YOU. 1393 00:54:41,177 --> 00:54:43,747 LET'S SEE IF IT WILL BE 1394 00:54:43,813 --> 00:54:45,181 REFLECTED ON THE -- ONE MORE 1395 00:54:45,248 --> 00:54:47,884 SECOND. 1396 00:55:09,305 --> 00:55:10,774 >> WE SEE YOU AND THE SLIDES 1397 00:55:10,840 --> 00:55:12,442 >> I DON'T SEE THE SLIDES 1398 00:55:12,509 --> 00:55:18,915 ANYMORE. 1399 00:55:18,982 --> 00:55:29,559 >> THAT'S THE FUN PART, REBECCA. 1400 00:55:36,666 --> 00:55:38,935 >> NOW YOU CAN SEE YOUR SLIDES, 1401 00:55:39,002 --> 00:55:39,302 AM I CORRECT? 1402 00:55:39,369 --> 00:55:43,206 >> YES, THEY ARE TOGGLING 1403 00:55:43,273 --> 00:55:44,507 FORWARD. 1404 00:55:44,574 --> 00:55:47,877 >> AWESOME. 1405 00:55:47,944 --> 00:55:48,211 >> PERFECT. 1406 00:55:48,278 --> 00:55:48,878 >> ALL RIGHT. 1407 00:55:48,945 --> 00:55:51,848 >> WE CAN SEE YOU IN THE 1408 00:55:51,915 --> 00:55:52,849 VIDEOCAST. 1409 00:55:52,916 --> 00:55:56,152 >> WE CAN SEE YOU. 1410 00:55:56,219 --> 00:55:57,087 >> OKAY THEN. 1411 00:55:57,153 --> 00:55:59,422 IF YOU'RE READY, WE ARE READY. 1412 00:55:59,489 --> 00:56:00,190 >> GREAT, THANK YOU. 1413 00:56:00,256 --> 00:56:01,891 IT'S A PLEASURE TO HAVE THIS 1414 00:56:01,958 --> 00:56:03,093 OPPORTUNITY TO PROVIDE UPDATES 1415 00:56:03,159 --> 00:56:05,995 ON BEHALF OF THE EDUCATIONAL 1416 00:56:06,062 --> 00:56:07,697 IMPERATIVES COMMITTEE. 1417 00:56:07,764 --> 00:56:09,532 OUR GROUP INCLUDES INDIVIDUALS 1418 00:56:09,599 --> 00:56:12,202 THAT HAVE EXPERTISE SPANNING THE 1419 00:56:12,268 --> 00:56:13,803 SPECTRUM FROM PATIENT 1420 00:56:13,870 --> 00:56:16,773 EXPERIENCES TO PATIENT ADVOCACY 1421 00:56:16,840 --> 00:56:18,174 WORK, EDUCATORS, RESEARCH 1422 00:56:18,241 --> 00:56:19,275 SCIENTISTS, AND CLINICIANS. 1423 00:56:19,342 --> 00:56:22,645 WHAT BRINGS US ALL TOGETHER IS A 1424 00:56:22,712 --> 00:56:24,781 COMMITMENT TO INCREASING 1425 00:56:24,848 --> 00:56:26,983 AWARENESS AND EDUCATION ABOUT 1426 00:56:27,050 --> 00:56:28,351 THE LYMPHATIC SYSTEM AND 1427 00:56:28,418 --> 00:56:33,656 LYMPHATIC DISEASES. 1428 00:56:33,723 --> 00:56:37,794 NEXT SLIDE PLEASE. 1429 00:56:37,861 --> 00:56:38,795 THANK YOU. 1430 00:56:38,862 --> 00:56:40,964 SO, OUR CURRENT VISION STATEMENT 1431 00:56:41,030 --> 00:56:42,398 IS SHOWN HERE. 1432 00:56:42,465 --> 00:56:45,902 WE ENVISION A FUTURE IN WHICH 1433 00:56:45,969 --> 00:56:47,103 EDUCATIONAL RESOURCES ON 1434 00:56:47,170 --> 00:56:49,439 LYMPHATIC FUNCTION AND LYMPHATIC 1435 00:56:49,506 --> 00:56:52,609 DISEASES ARE AVAILABLE TO ALL 1436 00:56:52,675 --> 00:56:52,942 STAKEHOLDERS. 1437 00:56:53,009 --> 00:56:55,545 HEALTH CARE PROVIDERS AND 1438 00:56:55,612 --> 00:56:56,212 RESEARCHERS UNDERSTAND THE 1439 00:56:56,279 --> 00:56:57,046 IMPLICATIONS OF THE LYMPHATIC 1440 00:56:57,113 --> 00:57:00,016 SYSTEM TO THEIR AREA OF 1441 00:57:00,083 --> 00:57:01,317 SPECIALTY. 1442 00:57:01,384 --> 00:57:03,286 AND PEOPLE LIVING WITH LDs 1443 00:57:03,353 --> 00:57:04,754 HAVE ACCESS NOT ONLY TO 1444 00:57:04,821 --> 00:57:07,390 EDUCATIONAL RESOURCES BUT ALSO 1445 00:57:07,457 --> 00:57:09,492 TO EVIDENCE-BASED AFFORDABLE AND 1446 00:57:09,559 --> 00:57:11,094 IMMEDIATE CARE. 1447 00:57:11,161 --> 00:57:12,529 SO THIS VISION STATEMENT IS IN 1448 00:57:12,595 --> 00:57:15,365 OUR MINDS AND DRIVING OUR 1449 00:57:15,431 --> 00:57:17,600 MOTIVATION TO ACCOMPLISH THIS 1450 00:57:17,667 --> 00:57:17,801 WORK. 1451 00:57:17,867 --> 00:57:23,339 NEXT SLIDE PLEASE. 1452 00:57:23,406 --> 00:57:24,541 THE EDUCATIONAL IMPERATIVE WORK 1453 00:57:24,607 --> 00:57:27,277 IS CRITICALLY IMPORTANT AS WE'VE 1454 00:57:27,343 --> 00:57:28,745 HEARD ALREADY TODAY, THE 1455 00:57:28,812 --> 00:57:30,747 LYMPHATIC SYSTEM PLAYS A 1456 00:57:30,814 --> 00:57:32,782 FUNDAMENTAL ROLE IN HEALTH, AND 1457 00:57:32,849 --> 00:57:34,417 INCREASED AWARENESS OF THIS 1458 00:57:34,484 --> 00:57:37,153 SYSTEM AND ITS DYSFUNCTION IS 1459 00:57:37,220 --> 00:57:40,256 NEEDED TO ENSURE TIMELY AND 1460 00:57:40,323 --> 00:57:42,025 OPTIMIZEDDED HEALTH CARE 1461 00:57:42,091 --> 00:57:43,993 DELIVERY AND EDUCATION, RESEARCH 1462 00:57:44,060 --> 00:57:47,597 AND DEVELOPMENT OPPORTUNITIES, 1463 00:57:47,664 --> 00:57:49,766 AND ENGAGEMENT OF HEALTH-RELATED 1464 00:57:49,833 --> 00:57:53,203 GOVERNMENT AGENCIES AND 1465 00:57:53,269 --> 00:57:54,370 INSURANCE AND INDUSTRY 1466 00:57:54,437 --> 00:57:55,104 STAKEHOLDERS. 1467 00:57:55,171 --> 00:57:56,773 WE'VE HEARD HOW EDUCATION IS KEY 1468 00:57:56,840 --> 00:58:00,810 AT ALL LEVELS TO DRIVING THIS 1469 00:58:00,877 --> 00:58:01,144 WORK FORWARD. 1470 00:58:01,211 --> 00:58:05,081 OUR GROUP IS COMING TOGETHER TO 1471 00:58:05,148 --> 00:58:06,616 IDENTIFY THE EDUCATIONAL GAPS 1472 00:58:06,683 --> 00:58:07,717 THAT CURRENTLY EXIST FOR 1473 00:58:07,784 --> 00:58:09,352 PATIENTS AND HEALTH CARE 1474 00:58:09,419 --> 00:58:12,455 PROVIDERS AND OTHERS LIKE 1475 00:58:12,522 --> 00:58:14,190 RESEARCHERS REGARDING LYMPHATIC 1476 00:58:14,257 --> 00:58:16,392 FUNCTION AND LYMPHATIC DISEASES. 1477 00:58:16,459 --> 00:58:19,162 AND WE AIM TO ISSUE 1478 00:58:19,229 --> 00:58:21,397 RECOMMENDATIONS THROUGH OUR WORK 1479 00:58:21,464 --> 00:58:25,134 FOR HOW TO DISSEMINATE KNOWLEDGE 1480 00:58:25,201 --> 00:58:26,936 ABOUT THE PATHOPHYSIOLOGY, 1481 00:58:27,003 --> 00:58:28,104 DIAGNOSIS, AND TREATMENT OF 1482 00:58:28,171 --> 00:58:29,305 LYMPHATIC DISEASES. 1483 00:58:29,372 --> 00:58:32,909 AND MORE BROADLY, THE ROLE OF 1484 00:58:32,976 --> 00:58:34,978 THE LYMPHATIC SYSTEM IN 1485 00:58:35,044 --> 00:58:36,646 PATHOPHYSIOLOGY OF COMMON 1486 00:58:36,713 --> 00:58:36,913 DISEASES. 1487 00:58:36,980 --> 00:58:40,116 THIS WORK CONNECTS TO THE LARGER 1488 00:58:40,183 --> 00:58:42,018 NCLD VISION AND CHARGE IN THAT 1489 00:58:42,085 --> 00:58:44,587 IT WILL ESTABLISH CHANNELS FOR 1490 00:58:44,654 --> 00:58:45,922 THE TIMELY DISSEMINATION OF 1491 00:58:45,989 --> 00:58:48,157 KNOWLEDGE TO THE PUBLIC BY 1492 00:58:48,224 --> 00:58:51,561 PROVIDING EDUCATION TO ALL 1493 00:58:51,628 --> 00:58:53,162 RELEVANT STAKEHOLDERS. 1494 00:58:53,229 --> 00:58:54,998 NEXT SLIDE PLEASE. 1495 00:58:55,064 --> 00:58:56,599 TO ENSURE FULL CONSIDERATION WE 1496 00:58:56,666 --> 00:58:58,668 MUST BETTER UNDERSTAND A NUMBER 1497 00:58:58,735 --> 00:59:00,637 OF FACTORS. 1498 00:59:00,703 --> 00:59:02,505 FOR EXAMPLE, WHAT HEALTH CARE 1499 00:59:02,572 --> 00:59:03,973 PROFESSIONALS ARE CURRENTLY 1500 00:59:04,040 --> 00:59:05,742 TAUGHT ABOUT THE LYMPHATIC 1501 00:59:05,808 --> 00:59:07,043 SYSTEM AND LYMPHATIC DISEASES 1502 00:59:07,110 --> 00:59:11,080 AND WHEN THIS TRAINING OCCURS. 1503 00:59:11,147 --> 00:59:13,182 ANY EXISTING RESOURCES THAT ARE 1504 00:59:13,249 --> 00:59:14,817 AVAILABLE FOR PATIENTS AND 1505 00:59:14,884 --> 00:59:18,221 CAREGIVERS, AND THE BARRIERS TO 1506 00:59:18,288 --> 00:59:19,589 ACCESSING THOSE RESOURCES. 1507 00:59:19,656 --> 00:59:21,257 THE MOST EFFECTIVE FORMATS OR 1508 00:59:21,324 --> 00:59:24,127 PLATFORMS THAT CAN BE USED TO 1509 00:59:24,193 --> 00:59:25,561 DELIVER EDUCATIONAL CONTENT, AND 1510 00:59:25,628 --> 00:59:27,830 HOW THAT CONTENT CAN BE 1511 00:59:27,897 --> 00:59:34,037 DISSEMINATED TO ENSURE 1512 00:59:34,103 --> 00:59:35,738 ACCESSIBILITY TO ALL. 1513 00:59:35,805 --> 00:59:38,574 HOW TO ESTABLISH A METHOD FOR 1514 00:59:38,641 --> 00:59:39,542 TRANSFORM SCIENTIFIC KNOWLEDGE 1515 00:59:39,609 --> 00:59:41,177 TO CLINICAL PRACTICE AND PATIENT 1516 00:59:41,244 --> 00:59:41,577 EDUCATION. 1517 00:59:41,644 --> 00:59:43,813 FINALLY, HOW ON YOU WORK AS A 1518 00:59:43,880 --> 00:59:45,348 COMMITTEE WILL OVERLAP AND 1519 00:59:45,415 --> 00:59:48,151 SYNERGIZE WITH THE WORK OF OTHER 1520 00:59:48,217 --> 00:59:49,919 COMMITTEES IN THIS COMMISSION. 1521 00:59:49,986 --> 00:59:51,888 FOR EXAMPLE, THE PATIENT TOOLS 1522 00:59:51,955 --> 00:59:55,458 COMMITTEE, WHICH A NUMBER OF US 1523 00:59:55,525 --> 00:59:57,527 ALSO SERVE ON, SHARES A NUMBER 1524 00:59:57,593 --> 00:59:59,262 OF GOALS ABOUT PATIENT EDUCATION 1525 00:59:59,329 --> 01:00:01,297 AND ACCESS TO EDUCATIONAL 1526 01:00:01,364 --> 01:00:02,799 RESOURCES. 1527 01:00:02,865 --> 01:00:04,801 AS WE HEARD IN PREVIOUS 1528 01:00:04,867 --> 01:00:05,401 PRESENTATION THE SCIENTIFIC 1529 01:00:05,468 --> 01:00:09,706 OVERLAP AS WELL AND HOW WE 1530 01:00:09,772 --> 01:00:11,007 TRANSFER SCIENTIFIC KNOWLEDGE TO 1531 01:00:11,074 --> 01:00:13,376 CLINICIANS AND OTHERS SO THAT IT 1532 01:00:13,443 --> 01:00:14,577 AFFECTS TREATMENTS THAT ARE 1533 01:00:14,644 --> 01:00:17,113 AVAILABLE FOR PATIENTS. 1534 01:00:17,180 --> 01:00:21,084 NEXT SLIDE PLEASE. 1535 01:00:21,150 --> 01:00:23,186 TO INCORPORATE THE WORK THAT'S 1536 01:00:23,252 --> 01:00:24,654 ALREADY BEEN ACHIEVED WE'LL 1537 01:00:24,721 --> 01:00:25,955 LEVERAGE REPORTS AND RESOURCES 1538 01:00:26,022 --> 01:00:29,926 FROM THE NIH AND OTHER RELEVANT 1539 01:00:29,993 --> 01:00:32,328 GOVERNMENT AGENCIES, FOR EXAMPLE 1540 01:00:32,395 --> 01:00:33,830 WE'VE HEARD TRANS-NIH LYMPHATIC 1541 01:00:33,896 --> 01:00:35,598 COORDINATION COMMITTEE HAS BEEN 1542 01:00:35,665 --> 01:00:39,836 WORKING SO WE WANT TO CAPITALIZE 1543 01:00:39,902 --> 01:00:41,237 AND LEVERAGE ON WHAT'S LEARNED 1544 01:00:41,304 --> 01:00:45,908 BY OTHERS. 1545 01:00:45,975 --> 01:00:48,478 WE'LL ALSO LEVERAGE EXISTING 1546 01:00:48,544 --> 01:00:50,747 CURRICULA, EDUCATIONAL 1547 01:00:50,813 --> 01:00:53,683 REQUIREMENTS AND CONTENT OF 1548 01:00:53,750 --> 01:00:54,917 BOARD CERTIFICATION CURRENT 1549 01:00:54,984 --> 01:00:57,687 EXISTING FOR PHYSICIANS, NURSES, 1550 01:00:57,754 --> 01:00:58,955 OCCUPATIONAL AND PHYSICAL 1551 01:00:59,022 --> 01:00:59,889 THERAPISTS AND LEVERAGE EXISTING 1552 01:00:59,956 --> 01:01:02,725 AS TO AND RESOURCES FOR PATIENTS 1553 01:01:02,792 --> 01:01:05,628 AND CAREGIVERS. 1554 01:01:05,695 --> 01:01:06,696 NEXT SLIDE PLEASE. 1555 01:01:06,763 --> 01:01:08,564 WHAT ARE THE POTENTIAL BARRIERS? 1556 01:01:08,631 --> 01:01:12,935 THERE ARE A NUMBER OF FACTORS 1557 01:01:13,002 --> 01:01:15,138 THAT MAY PROHIBIT SUCCESS OF THE 1558 01:01:15,204 --> 01:01:15,571 WORK. 1559 01:01:15,638 --> 01:01:18,408 FOR EXAMPLE, HOW TO KEEP THESE 1560 01:01:18,474 --> 01:01:21,010 EDUCATIONAL RESOURCES UP TO DATE 1561 01:01:21,077 --> 01:01:22,779 GIVEN SCIENTIFIC UNDERSTANDING 1562 01:01:22,845 --> 01:01:25,681 OF THE LYMPHATIC SYSTEM. 1563 01:01:25,748 --> 01:01:27,884 LDs AND TREATMENTS IS CONSTANT 1564 01:01:27,950 --> 01:01:28,918 EYE EVOLVING. 1565 01:01:28,985 --> 01:01:29,852 DEGREE TO WHICH VARIOUS 1566 01:01:29,919 --> 01:01:31,988 COMMUNITIES MAY BE AWARE OF, 1567 01:01:32,055 --> 01:01:34,490 HAVE ACCESS TO AND UTILIZE, 1568 01:01:34,557 --> 01:01:36,059 EDUCATIONAL RESOURCES, AND WHICH 1569 01:01:36,125 --> 01:01:37,493 OF THESE RESOURCES ARE CURRENTLY 1570 01:01:37,560 --> 01:01:42,365 OR WILL BE IN THE FUTURE MOST 1571 01:01:42,432 --> 01:01:42,598 HELPFUL. 1572 01:01:42,665 --> 01:01:46,903 AND IMPORTANTLY, THE DEGREE TO 1573 01:01:46,969 --> 01:01:47,837 WHICH CLINICIANS, EDUCATIONAL 1574 01:01:47,904 --> 01:01:49,038 INSTITUTIONS, ACCREDITING BODIES 1575 01:01:49,105 --> 01:01:50,239 AND LICENSING BOARDS WILL 1576 01:01:50,306 --> 01:01:52,442 RECOGNIZE THE IMPORTANCE OF THE 1577 01:01:52,508 --> 01:01:54,243 LYMPHATIC SYSTEM AND LYMPHATIC 1578 01:01:54,310 --> 01:01:56,913 DISEASES AND THEN INCLUDE THIS 1579 01:01:56,979 --> 01:01:58,648 CONTENT IN THEIR CURRICULA, 1580 01:01:58,714 --> 01:02:01,851 BOARD EXAMS, AND CONTINUING 1581 01:02:01,918 --> 01:02:04,353 MEDICAL EDUCATION COURSES. 1582 01:02:04,420 --> 01:02:06,989 NEXT SLIDE PLEASE. 1583 01:02:07,056 --> 01:02:08,424 TO ENSURE INCLUSIVE ACTION WILL 1584 01:02:08,491 --> 01:02:10,726 REQUIRE THE SUPPORT AND INPUT 1585 01:02:10,793 --> 01:02:13,596 FROM A NUMBER OF DIVERSE GROUPS 1586 01:02:13,663 --> 01:02:16,566 OF PEOPLE, TEAMS, AND 1587 01:02:16,632 --> 01:02:16,933 ORGANIZATIONS. 1588 01:02:16,999 --> 01:02:21,370 SUCH AS NIH, CDC, AND OTHER 1589 01:02:21,437 --> 01:02:23,005 RELEVANT GOVERNMENT AGENCIES, 1590 01:02:23,072 --> 01:02:24,340 PROFESSIONAL AND CLINICAL 1591 01:02:24,407 --> 01:02:25,341 ASSOCIATIONS, FOR EXAMPLE THE 1592 01:02:25,408 --> 01:02:28,578 AMERICAN COLLEGE OF SURGEONS AND 1593 01:02:28,644 --> 01:02:31,948 MANY OTHERS, PATIENT ADVOCACY 1594 01:02:32,014 --> 01:02:34,183 GROUPS AND NETWORKS, EDUCATORS 1595 01:02:34,250 --> 01:02:38,855 AT MEDICAL SCHOOLS, NURSING 1596 01:02:38,921 --> 01:02:41,357 SCHOOLS, AND PT/OT/LT PROGRAMS 1597 01:02:41,424 --> 01:02:43,059 AND ACCREDITING BODIES OF THOSE 1598 01:02:43,126 --> 01:02:44,193 SCHOOLS AND PROGRAMS. 1599 01:02:44,260 --> 01:02:47,296 AS WELL AS NATIONAL LICENSING 1600 01:02:47,363 --> 01:02:51,234 BOARDS FOR MEDICINE, NURSING, 1601 01:02:51,300 --> 01:02:51,868 AND PHYSICAL, OCCUPATIONAL, 1602 01:02:51,934 --> 01:02:54,203 LYMPHEDEMA THERAPY. 1603 01:02:54,270 --> 01:02:56,572 AND FINALLY FUNDING AGENCIES. 1604 01:02:56,639 --> 01:02:57,540 NEXT SLIDE PLEASE. 1605 01:02:57,607 --> 01:03:00,810 SO, WHAT WILL OUR WORK AS A 1606 01:03:00,877 --> 01:03:02,211 COMMITTEE ENTAIL MOVING FORWARD? 1607 01:03:02,278 --> 01:03:05,047 IN THE SPRING AND SUMMER WE PLAN 1608 01:03:05,114 --> 01:03:06,582 TO CONDUCT AN AUDIT, TO 1609 01:03:06,649 --> 01:03:08,885 DETERMINE WHAT IS CURRENTLY 1610 01:03:08,951 --> 01:03:12,455 TAUGHT TO MEDICAL, NURSING, 1611 01:03:12,522 --> 01:03:14,524 THERAPY STUDENTS, WHEN THIS 1612 01:03:14,590 --> 01:03:16,826 TRAINING OCCURS, AND WHAT IS 1613 01:03:16,893 --> 01:03:19,328 INCLUDED ON LICENSING BOARD 1614 01:03:19,395 --> 01:03:20,897 EXAMS REGARDING LYMPHATIC SYSTEM 1615 01:03:20,963 --> 01:03:22,198 AND LYMPHATIC DISEASES. 1616 01:03:22,265 --> 01:03:24,567 WE ALSO LOOK FORWARD TO 1617 01:03:24,634 --> 01:03:26,369 REVIEWING THE FINDINGS OF THE 1618 01:03:26,435 --> 01:03:29,639 PATIENT TOOLS COMMITTEE ON 1619 01:03:29,705 --> 01:03:31,174 EXISTING PATIENT AND CAREGIVER 1620 01:03:31,240 --> 01:03:34,610 RESOURCES AND ANY BARRIERS TO 1621 01:03:34,677 --> 01:03:36,212 ACCESSING THOSE RESOURCES. 1622 01:03:36,279 --> 01:03:38,414 AND MOVING INTO THE FALL, WE 1623 01:03:38,481 --> 01:03:41,817 WILL CREATE AN INTERIM REPORT 1624 01:03:41,884 --> 01:03:43,886 INCLUDING AN ANALYSIS OF THE RFI 1625 01:03:43,953 --> 01:03:46,289 DATA THAT WILL BE COLLECTED AND 1626 01:03:46,355 --> 01:03:48,191 WILL IDENTIFY ANY GAPS IN THAT 1627 01:03:48,257 --> 01:03:50,126 DATA AND THE KEY STAKEHOLDERS 1628 01:03:50,193 --> 01:03:52,094 THAT WE WILL NEED TO CONTACT TO 1629 01:03:52,161 --> 01:03:53,629 FILL THOSE GAPS. 1630 01:03:53,696 --> 01:03:55,831 AND IMPORTANTLY WE PLAN TO 1631 01:03:55,898 --> 01:03:59,202 DETERMINE HOW BEST TO ENGAGE 1632 01:03:59,268 --> 01:04:01,337 THOSE STAKEHOLDERS, AND IDENTIFY 1633 01:04:01,404 --> 01:04:03,573 POTENTIAL PLATFORMS AND FORMATS 1634 01:04:03,639 --> 01:04:04,941 TO DELIVER EDUCATIONAL CONTENT, 1635 01:04:05,007 --> 01:04:08,744 AND HOW TO DISSEMINATE THAT 1636 01:04:08,811 --> 01:04:11,247 CONTENT TO ENSURE ACCESSIBILITY. 1637 01:04:11,314 --> 01:04:13,115 TRANSITIONING TO YEAR 2, WE'LL 1638 01:04:13,182 --> 01:04:15,451 HOST TARGETED TOWN HALLS AND 1639 01:04:15,518 --> 01:04:17,153 OTHER INTERACTIONS WITH KEY 1640 01:04:17,220 --> 01:04:19,722 STAKEHOLDERS, TO HELP FILL THE 1641 01:04:19,789 --> 01:04:21,123 GAPS IDENTIFIED VIA RFI, AND 1642 01:04:21,190 --> 01:04:23,826 WE'LL HAVE AN OPPORTUNITY TO 1643 01:04:23,893 --> 01:04:26,362 REVIEW OUR AUDIT FINDINGS ON 1644 01:04:26,429 --> 01:04:28,197 CURRICULA AND BOARD EXAM 1645 01:04:28,264 --> 01:04:30,733 CONTENT, AND EXISTING PATIENT 1646 01:04:30,800 --> 01:04:31,801 AND CAREGIVER RESOURCES, AND 1647 01:04:31,867 --> 01:04:33,803 THAT WORK IS GOING TO BE 1648 01:04:33,869 --> 01:04:36,939 CRITICAL TO HELP DETERMINE HOW 1649 01:04:37,006 --> 01:04:37,907 TO LEVERAGE PREEXISTING 1650 01:04:37,974 --> 01:04:40,876 RESOURCES TO ACCOMPLISH THIS 1651 01:04:40,943 --> 01:04:41,444 WORK. 1652 01:04:41,510 --> 01:04:43,112 IN FEBRUARY AT OUR IN-PERSON 1653 01:04:43,179 --> 01:04:43,913 MEETING WE'LL HAVE AN 1654 01:04:43,980 --> 01:04:45,514 OPPORTUNITY TO REPORT ON THE 1655 01:04:45,581 --> 01:04:47,116 LESSONS LEARNED FROM THESE TOWN 1656 01:04:47,183 --> 01:04:49,785 HALLS AND FOCUS GROUPS WITH KEY 1657 01:04:49,852 --> 01:04:52,421 STAKEHOLDERS AND OUR AUDIT 1658 01:04:52,488 --> 01:04:52,788 FINDINGS. 1659 01:04:52,855 --> 01:04:54,490 AND MOVING INTO THE SPRING OF 1660 01:04:54,557 --> 01:04:58,728 YEAR 2 WE WILL BE DRAFTING 1661 01:04:58,794 --> 01:05:00,896 RECOMMENDATIONS FOR NEXT STEPS, 1662 01:05:00,963 --> 01:05:03,432 INCLUDING A STRATEGIC PLAN, FOR 1663 01:05:03,499 --> 01:05:06,135 THE DISSEMINATION OF EDUCATIONAL 1664 01:05:06,202 --> 01:05:08,337 MATERIALS TO TRAINEES, 1665 01:05:08,404 --> 01:05:10,406 PRACTICING CLINICIANS, PATIENTS 1666 01:05:10,473 --> 01:05:12,842 AND CAREGIVERS AND OTHERS, AND 1667 01:05:12,908 --> 01:05:15,911 IMPORTANTLY HOW TO TRACK AND 1668 01:05:15,978 --> 01:05:18,314 CONTINUE THOSE EFFORTS, MEASURE 1669 01:05:18,381 --> 01:05:20,983 THEIR RESULTS LONG TERM. 1670 01:05:21,050 --> 01:05:22,885 AND FINALLY, YEAR 2 WILL 1671 01:05:22,952 --> 01:05:24,353 CULMINATE WITH A REPORT THAT 1672 01:05:24,420 --> 01:05:27,089 SUMMARIZES ALL OF OUR FINDINGS 1673 01:05:27,156 --> 01:05:28,257 AND RECOMMENDATIONS. 1674 01:05:28,324 --> 01:05:31,527 THIS IS OUR TIMELINE AND PLAN 1675 01:05:31,594 --> 01:05:35,031 FOR ACCOMPLISHING THIS WORK, AND 1676 01:05:35,097 --> 01:05:36,565 TURN OVER THE FLOOR NOW SO WE 1677 01:05:36,632 --> 01:05:40,069 CAN HAVE A DISCUSSION AND HEAR 1678 01:05:40,136 --> 01:05:40,703 YOUR FEEDBACK. 1679 01:05:40,770 --> 01:05:44,273 >> THANK YOU, REBECCA, FOR 1680 01:05:44,340 --> 01:05:51,047 REPRESENTING THE GROUP AND 1681 01:05:51,113 --> 01:05:54,984 INCLUDING A THOUGHTFUL WALK THEN 1682 01:05:55,051 --> 01:05:56,552 WALK-THROUGH OF THE ACTION 1683 01:05:56,619 --> 01:05:57,019 PLAN. 1684 01:05:57,086 --> 01:05:58,554 I'LL OPEN UP TO THE FLOOR FOR 1685 01:05:58,621 --> 01:06:00,056 ANY FEEDBACK IF YOU WANT TO TALK 1686 01:06:00,122 --> 01:06:02,191 ABOUT WHAT'S WORKING IN THIS 1687 01:06:02,258 --> 01:06:04,794 PLAN, WHAT BUILDS YOU MIGHT 1688 01:06:04,860 --> 01:06:06,595 RECOMMEND OR CONNECTIONS TO YOUR 1689 01:06:06,662 --> 01:06:09,198 WORK THAT YOU'RE SEEING. 1690 01:06:09,265 --> 01:06:10,032 >> GO AHEAD. 1691 01:06:10,099 --> 01:06:11,934 >> YOU'VE HEARD ME SAY THIS OVER 1692 01:06:12,001 --> 01:06:14,470 AND OVER AGAIN. 1693 01:06:14,537 --> 01:06:17,206 WHAT YOU PRESENTED IS GREAT. 1694 01:06:17,273 --> 01:06:19,375 AND CLEARLY IS NEEDED. 1695 01:06:19,442 --> 01:06:29,919 BUT, AGAIN, IT'S TARGETING 1696 01:06:30,720 --> 01:06:31,754 CLASSIC LYMPHATIC DISEASES, 1697 01:06:31,821 --> 01:06:32,221 SYMPTOMATIC LYMPHEDEMA 1698 01:06:32,288 --> 01:06:33,956 ABSOLUTELY NEEDED AND THIS PLAN 1699 01:06:34,023 --> 01:06:36,359 IS TERRIFIC BUT IT'S NOT EASY 1700 01:06:36,425 --> 01:06:42,064 YET BUT I WANT TO ASK YOU WE 1701 01:06:42,131 --> 01:06:46,202 WERE DISCUSSING THE OTHER ONES 1702 01:06:46,268 --> 01:06:51,173 BEFORE, WHICH MAY BE 1703 01:06:51,240 --> 01:06:53,576 SYMPTOMATIC, CONSEQUENCE OF 1704 01:06:53,642 --> 01:06:54,243 LYMPHATICS MALFUNCTION, WHETHER 1705 01:06:54,310 --> 01:06:58,047 WE NEED HELP FROM THE 1706 01:06:58,114 --> 01:07:04,186 COMMISSIONS, WE MAY TARGET 1707 01:07:04,253 --> 01:07:06,922 THREE, FOUR DISEASES, G.I. OR 1708 01:07:06,989 --> 01:07:09,358 SOMETHING LIKE THAT, IDENTIFY 1709 01:07:09,425 --> 01:07:11,761 FIVE, SIX, LARGE CLINICS THAT 1710 01:07:11,827 --> 01:07:13,162 MAY HAVE PATIENTS FOR WHICH THEY 1711 01:07:13,229 --> 01:07:15,364 HAVE THOSE CONDITIONS BUT DON'T 1712 01:07:15,431 --> 01:07:18,567 HAVE A CLEAR REASON WHY. 1713 01:07:18,634 --> 01:07:22,405 TRY TO BRING THEM TO BE STUDIED 1714 01:07:22,471 --> 01:07:25,641 INTO DEPTH TO SEE IF WE IDENTIFY 1715 01:07:25,708 --> 01:07:28,511 ANY OF THOSE, ONE OF THOSE 1716 01:07:28,577 --> 01:07:34,617 UNDERA LYING CONDITIONS. 1717 01:07:34,683 --> 01:07:36,452 OTHERWISE WE WILL EXCLUDE THE 1718 01:07:36,519 --> 01:07:37,887 OTHER ONES. 1719 01:07:37,953 --> 01:07:40,856 THIS IS A GREAT OPPORTUNITY TO 1720 01:07:40,923 --> 01:07:42,925 EXPAND THIS TOPIC. 1721 01:07:42,992 --> 01:07:46,095 MAYBE AGAIN WE SHOULD TAKE TWO, 1722 01:07:46,162 --> 01:07:56,672 THREE DISEASES, THAT THEY ARE 1723 01:08:06,315 --> 01:08:07,116 LARGE, CARDIOVASCULAR DISEASES, 1724 01:08:07,183 --> 01:08:08,984 AND THERE ARE MANY, SOMEONE 1725 01:08:09,051 --> 01:08:10,553 SHOULD FOCUS AND SEE IF AT THE 1726 01:08:10,619 --> 01:08:21,130 END WE SHOW THERE IS SOMETHING 1727 01:08:24,800 --> 01:08:25,468 UNDERNEATH. 1728 01:08:25,534 --> 01:08:28,070 >> THE COMMITTEE DID DISCUSS 1729 01:08:28,137 --> 01:08:28,904 BROADER APPRECIATION OF 1730 01:08:28,971 --> 01:08:31,507 INVOLVEMENT IN THE 1731 01:08:31,574 --> 01:08:32,408 PATHOPHYSIOLOGY OF COMMON 1732 01:08:32,475 --> 01:08:35,144 DISEASES, AND I THINK THE 1733 01:08:35,211 --> 01:08:35,945 INFRASTRUCTURE THAT WE'RE 1734 01:08:36,011 --> 01:08:38,414 PROPOSING CAN REALLY LAY THE 1735 01:08:38,481 --> 01:08:40,883 GROUND WORK FOR FUTURE ABILITY 1736 01:08:40,950 --> 01:08:43,786 TO COMMUNICATE IS THAT 1737 01:08:43,853 --> 01:08:46,956 LATE-BREAKING RESEARCH AND 1738 01:08:47,022 --> 01:08:48,924 UNDERSTANDING TO ALL 1739 01:08:48,991 --> 01:08:49,258 STAKEHOLDERS. 1740 01:08:49,325 --> 01:08:53,729 SO, YEAH, THE FIRST STEP AND 1741 01:08:53,796 --> 01:08:55,831 THIS IS WORK FOR EXISTING 1742 01:08:55,898 --> 01:08:59,235 COMMITTEES THAT ALREADY ARE 1743 01:08:59,301 --> 01:09:00,936 UNDERSERVED AND UNDERDIAGNOSED, 1744 01:09:01,003 --> 01:09:02,505 BUT ABSOLUTELY THE END GOAL 1745 01:09:02,571 --> 01:09:06,575 WOULD BE TO CREATE AN 1746 01:09:06,642 --> 01:09:08,210 EDUCATIONAL STRATEGIC PLAN THAT 1747 01:09:08,277 --> 01:09:09,311 COULD TRANSLATE LATE-BREAKING 1748 01:09:09,378 --> 01:09:17,086 CLINICAL FINDINGS TO THE BEDSIDE 1749 01:09:17,152 --> 01:09:17,653 AND PATIENT EDUCATION. 1750 01:09:17,720 --> 01:09:28,230 >> I THINK THAT WAS A GREAT 1751 01:09:30,466 --> 01:09:32,201 WALK-THROUGH, I WOULD CONSIDER 1752 01:09:32,268 --> 01:09:35,704 Ph.D. PROGRAMS OR GRADUATE 1753 01:09:35,771 --> 01:09:36,972 SCHOOLS, I IMAGINE CELL, CANCER 1754 01:09:37,039 --> 01:09:39,842 BIOLOGY PROGRAMS DO A DECENT 1755 01:09:39,909 --> 01:09:40,042 JOB. 1756 01:09:40,109 --> 01:09:43,112 I CAN TELL YOU ABOUT A TOP TIER 1757 01:09:43,178 --> 01:09:44,113 NEUROSCIENCE PROGRAM, THERE'S 1758 01:09:44,179 --> 01:09:46,081 NOT A SINGLE MOMENT SPENT 1759 01:09:46,148 --> 01:09:47,616 TALKING ABOUT LYMPHATIC SYSTEM. 1760 01:09:47,683 --> 01:09:49,852 I KNOW THAT'S FRINGY BUT I THINK 1761 01:09:49,919 --> 01:09:51,854 IN THE CENSUS MIGHT BE WORK 1762 01:09:51,921 --> 01:09:53,188 THINKING ABOUT WHILE YOU'RE 1763 01:09:53,255 --> 01:09:56,258 LOOKING AT MED SCHOOLS AND SUCH, 1764 01:09:56,325 --> 01:10:00,262 Ph.D. PROGRAMS, HOW WELL DO 1765 01:10:00,329 --> 01:10:02,598 THAT DO, I IMAGINE IT'S UNEVEN 1766 01:10:02,665 --> 01:10:05,601 WHO IS DOING IT WELL, WHO IS 1767 01:10:05,668 --> 01:10:05,968 NOT. 1768 01:10:06,035 --> 01:10:07,736 THE OTHER BIT, CLINICIANS UNLESS 1769 01:10:07,803 --> 01:10:09,538 WE WAIT FORE PRESENT CLINICIANS 1770 01:10:09,605 --> 01:10:10,940 TO DIE OFF OR RETIRE PROBABLY 1771 01:10:11,006 --> 01:10:13,275 NODE TO THINK ABOUT THE CME 1772 01:10:13,342 --> 01:10:13,542 PIPELINE. 1773 01:10:13,609 --> 01:10:19,181 WHEN YOU GO TO THE BIG CLINICAL 1774 01:10:19,248 --> 01:10:20,916 CONFERENCES WHAT IS THE MENU 1775 01:10:20,983 --> 01:10:22,217 LIKE PROVIDING INFORMATION ON 1776 01:10:22,284 --> 01:10:24,954 LYMPHATIC CONDITION OR DISEASE 1777 01:10:25,020 --> 01:10:28,023 AT AAN OR -- I LIVE IN THE BRAIN 1778 01:10:28,090 --> 01:10:30,526 WORLD BUT I KNOW THE SAME 1779 01:10:30,593 --> 01:10:31,660 CONFERENCES EXIST FOR 1780 01:10:31,727 --> 01:10:32,628 EVERYBODY'S SYSTEM, RIGHT? 1781 01:10:32,695 --> 01:10:34,563 SO WHAT'S THAT LIKE? 1782 01:10:34,630 --> 01:10:36,465 WHEN YOU THINK ABOUT CENSUS, 1783 01:10:36,532 --> 01:10:38,968 THAT MIGHT BE WORTH CHECKING OUT 1784 01:10:39,034 --> 01:10:39,301 ALSO. 1785 01:10:39,368 --> 01:10:41,503 >> TO TAG ON WHAT YOU JUST SAID, 1786 01:10:41,570 --> 01:10:44,473 TO BRING IT TO REAL WORLD 1787 01:10:44,540 --> 01:10:45,574 PERSPECTIVE ABOUT SIX OR SEVEN 1788 01:10:45,641 --> 01:10:47,743 YEARS AGO I HAD THE OPPORTUNITY 1789 01:10:47,810 --> 01:10:52,648 TO PUT ON ONE OF THE CME 1790 01:10:52,715 --> 01:10:58,821 PROGRAMS AT THE AMERICAN HEART 1791 01:10:58,887 --> 01:11:03,959 ASSOCIATION, ATTENDED BY 60,000 1792 01:11:04,026 --> 01:11:07,229 PEOPLE, WE HAD SIX PEOPLE SHOW, 1793 01:11:07,296 --> 01:11:08,464 IT'S MARKETING, WE NEED TO FIND 1794 01:11:08,530 --> 01:11:12,635 A WAY TO MAKE IT IMPORTANT FOR 1795 01:11:12,701 --> 01:11:14,169 PEOPLE TO LEARN. 1796 01:11:14,236 --> 01:11:15,070 >> GO AHEAD. 1797 01:11:15,137 --> 01:11:17,339 >> TO DOVETAIL YOU BRING UP A 1798 01:11:17,406 --> 01:11:18,874 WONDERFUL POINT A LOT OF 1799 01:11:18,941 --> 01:11:19,975 COLLEAGUES CONSIDERED TOO IS 1800 01:11:20,042 --> 01:11:22,978 THAT SOME OF THAT MARKETING IS 1801 01:11:23,045 --> 01:11:25,881 GOING TO BE COMING -- EMBEDDING 1802 01:11:25,948 --> 01:11:26,749 INTO CLINICIAN'S AWARENESS WHO 1803 01:11:26,815 --> 01:11:28,550 ARE ALREADY DOING THE TRAINING 1804 01:11:28,617 --> 01:11:31,153 AND THEIR AREA OF SPECIALTY AND 1805 01:11:31,220 --> 01:11:31,920 THEIR UNDERSTANDING AND 1806 01:11:31,987 --> 01:11:33,922 IMPLICATIONS SO IT'S SORT OF 1807 01:11:33,989 --> 01:11:35,324 TAGGING INTO THOSE DIFFERENT 1808 01:11:35,391 --> 01:11:40,129 SYSTEMS ACROSS AND NOT BRINGING 1809 01:11:40,195 --> 01:11:41,530 IN NEW PRESENTERS, THEY ARE ONLY 1810 01:11:41,597 --> 01:11:43,232 GOING TO PRESENT ON LYMPHATICS. 1811 01:11:43,298 --> 01:11:44,833 AS MUCH AS I WOULD LOVE 1812 01:11:44,900 --> 01:11:47,436 SOMETHING IF THE PREVIOUS 1813 01:11:47,503 --> 01:11:48,437 SESSION JUST HAD 400 PEOPLE 1814 01:11:48,504 --> 01:11:52,808 SITTING IN IT, IT MIGHT GO DOWN 1815 01:11:52,875 --> 01:11:54,109 TO TEN PEOPLE REMAINING IN THE 1816 01:11:54,176 --> 01:11:55,744 SPACE UNLESS IT'S KEY LEADERS IN 1817 01:11:55,811 --> 01:11:57,479 DIFFERENT AREAS THAT WILL GO TO 1818 01:11:57,546 --> 01:12:00,582 GO AHEAD AND EMBED IT, BRING ON 1819 01:12:00,649 --> 01:12:01,317 THAT AWARENESS. 1820 01:12:01,383 --> 01:12:03,018 ORGANICALLY THIS STARTS TO 1821 01:12:03,085 --> 01:12:04,853 BECOME MORE OF AWARENESS WITHIN 1822 01:12:04,920 --> 01:12:05,587 THE CLINICIANS, SPECIFICALLY 1823 01:12:05,654 --> 01:12:08,991 SEEKING OUT SOME OTHER TYPES OF 1824 01:12:09,058 --> 01:12:09,558 EDUCATIONAL OPPORTUNITIES, 1825 01:12:09,625 --> 01:12:15,264 PROBABLY WHY THE SIX INDIVIDUALS 1826 01:12:15,330 --> 01:12:16,799 SAT THERE. 1827 01:12:16,865 --> 01:12:19,601 >> ANOTHER APPROACH MIGHT BE 1828 01:12:19,668 --> 01:12:21,070 THROUGH THE BACK DOOR, 1829 01:12:21,136 --> 01:12:24,039 UNIVERSITY OF TEXAS M.D. 1830 01:12:24,106 --> 01:12:26,408 ANDERSON GRADUATE SCHOOL 1831 01:12:26,475 --> 01:12:27,509 BIOMEDICAL SCIENCES TRAINS 1832 01:12:27,576 --> 01:12:29,645 PhDs, AND SO FOUR YEARS AGO 1833 01:12:29,712 --> 01:12:32,748 DECIDED YOU CAN DO A NANOCOURSE 1834 01:12:32,815 --> 01:12:35,050 AND PUT IT ON THERE FOR ONE HOUR 1835 01:12:35,117 --> 01:12:37,152 AND PRETTY MUCH COVER MOST OF 1836 01:12:37,219 --> 01:12:38,654 THE BASICS AND LYMPHATICS. 1837 01:12:38,721 --> 01:12:40,422 YOU'LL PICK UP STUDENTS WHO NEED 1838 01:12:40,489 --> 01:12:43,926 THAT ONE HOUR TO GRADUATE AND WE 1839 01:12:43,992 --> 01:12:46,095 GET THREE, SOME YEARS SIX, NOT 1840 01:12:46,161 --> 01:12:47,396 HUGE, ANOTHER WAY FOR THE 1841 01:12:47,463 --> 01:12:48,831 PhDs TO PUT THEIR HANDS UP 1842 01:12:48,897 --> 01:12:53,102 AND SAY WHOEVER IS TEACHING THE 1843 01:12:53,168 --> 01:12:54,770 CANCER IMMUNOLOGY COURSES OR 1844 01:12:54,837 --> 01:12:56,004 THE -- I GUEST LECTURE EVERY 1845 01:12:56,071 --> 01:13:05,681 YEAR FOR A COUPLE OF THOSE BRING 1846 01:13:05,748 --> 01:13:06,782 IN PAPERS ON LYMPHATICS, THEY 1847 01:13:06,849 --> 01:13:08,417 WILL LEARN OR GET EXPOSED, A 1848 01:13:08,484 --> 01:13:09,952 SNEAKY WAY TO COME IN AND PUSH 1849 01:13:10,018 --> 01:13:12,788 IT FROM THE Ph.D. SIDE. 1850 01:13:12,855 --> 01:13:14,556 M.D. SIDE I HAVE NO IDEA HOW 1851 01:13:14,623 --> 01:13:20,129 THAT WOULD WORK BUT THAT'S JUST 1852 01:13:20,195 --> 01:13:22,431 AN IDEA. 1853 01:13:22,498 --> 01:13:24,166 >> I WANT TO ADD GUILLERMO SAID 1854 01:13:24,233 --> 01:13:26,969 EARLIER NEED TO HAVE A REGISTRY 1855 01:13:27,035 --> 01:13:30,405 OR DATABASE SHOWING HOW MANY 1856 01:13:30,472 --> 01:13:31,640 PEOPLE ARE BEING IMPACTED BY 1857 01:13:31,707 --> 01:13:32,541 THIS DISEASE. 1858 01:13:32,608 --> 01:13:35,043 ONE KEY ELEMENT TO SHOW, I'M 1859 01:13:35,110 --> 01:13:40,382 JUST LEARNING SO SO MUCH MORE 1860 01:13:40,449 --> 01:13:43,118 AS A PATIENT MYSELF AND BEING 1861 01:13:43,185 --> 01:13:44,219 PART OF THIS COMMITTEE, THE 1862 01:13:44,286 --> 01:13:45,654 KNOWLEDGE HOW MANY PEOPLE THIS 1863 01:13:45,721 --> 01:13:46,622 DISEASE IS IMPACTING. 1864 01:13:46,688 --> 01:13:48,257 ONCE THAT'S GATHERED AND PUT OUT 1865 01:13:48,323 --> 01:13:51,493 THERE, MORE PEOPLE WILL START TO 1866 01:13:51,560 --> 01:13:52,127 LISTEN. 1867 01:13:52,194 --> 01:13:58,133 ONCE MORE PEOPLE START TO LISTEN 1868 01:13:58,200 --> 01:14:00,435 THERE WILL BE MORE EDUCATION 1869 01:14:00,502 --> 01:14:02,171 PLACED ON THIS DISEASE, SO IT'S 1870 01:14:02,237 --> 01:14:03,639 IMPORTANT TO THINK ABOUT HOW CAN 1871 01:14:03,705 --> 01:14:05,941 WE CREATE A REGISTRY OR DATABASE 1872 01:14:06,008 --> 01:14:09,111 OR GATHER INFORMATION FOR PEOPLE 1873 01:14:09,178 --> 01:14:11,213 THAT ARE DIAGNOSED OR 1874 01:14:11,280 --> 01:14:12,281 SYMPTOMATIC OF LYMPHATIC DISEASE 1875 01:14:12,347 --> 01:14:13,849 TO SHOW THIS IS HOW MANY PEOPLE 1876 01:14:13,916 --> 01:14:16,885 ARE IMPACTED THAT WE KNOW OF, 1877 01:14:16,952 --> 01:14:17,386 RIGHT? 1878 01:14:17,452 --> 01:14:20,856 AND THERE ARE EVEN MORE THAN 1879 01:14:20,923 --> 01:14:22,691 THAT UNDIAGNOSED THAT SHOWS THE 1880 01:14:22,758 --> 01:14:24,827 IMPORTANCE OF MOVING RESEARCH 1881 01:14:24,893 --> 01:14:26,995 FORWARD AND MOVING EDUCATION 1882 01:14:27,062 --> 01:14:30,265 FORWARD AND SO FORTH. 1883 01:14:30,332 --> 01:14:33,769 >> SO, ONE OF THE THINGS MISSING 1884 01:14:33,836 --> 01:14:36,038 HERE, IN MY LIFE PRESENT ALL THE 1885 01:14:36,104 --> 01:14:40,876 TIME, SOCIAL MEDIA. 1886 01:14:40,943 --> 01:14:43,946 BECAUSE IT'S FASTEST AND WIDEST 1887 01:14:44,012 --> 01:14:46,481 WAY TO GET TO THE PEOPLE. 1888 01:14:46,548 --> 01:14:48,851 SO I'M PART OF DIFFERENT 1889 01:14:48,917 --> 01:14:50,185 FACEBOOK PAGES OF DIFFERENT 1890 01:14:50,252 --> 01:14:53,322 DISEASES, AND YOU CAN SEE HOW 1891 01:14:53,388 --> 01:14:59,027 PEOPLE ARE STRUGGLING IN 1892 01:14:59,094 --> 01:14:59,628 UNDERSTANDING. 1893 01:14:59,695 --> 01:15:02,664 AND WATCHING THAT I DON'T 1894 01:15:02,731 --> 01:15:03,699 PROVIDE BUT SOMETIMES IF YOU 1895 01:15:03,765 --> 01:15:05,200 PUBLISH SOMETHING THIS IS A NEW 1896 01:15:05,267 --> 01:15:07,302 PAPER AND TREATMENT BUT MOST OF 1897 01:15:07,369 --> 01:15:10,172 THE PATIENTS ARE COMING TO US 1898 01:15:10,239 --> 01:15:12,841 FROM SOCIAL MEDIA BECAUSE THEY 1899 01:15:12,908 --> 01:15:15,277 GO SOMEWHERE, HAVE SYMPTOMS, 1900 01:15:15,344 --> 01:15:18,146 FIND A GROUP TALKING ABOUT THIS, 1901 01:15:18,213 --> 01:15:22,885 PLACES TO TREAT, SO ON. 1902 01:15:22,951 --> 01:15:25,787 SO IT'S ENORMOUSLY IMPORTANT 1903 01:15:25,854 --> 01:15:28,123 TOOL WE HAVE TO USE. 1904 01:15:28,190 --> 01:15:33,061 I'M NOT SURE HOW. 1905 01:15:33,128 --> 01:15:35,230 SO MANY, INSTAGRAM, X, BUT IT'S 1906 01:15:35,297 --> 01:15:35,497 ONE. 1907 01:15:35,564 --> 01:15:39,468 ON THE TOPIC OF INTEREST, 1908 01:15:39,534 --> 01:15:42,571 INTEREST WILL GROW WITH 1909 01:15:42,638 --> 01:15:43,872 DEVELOPING NEW TREATMENTS AND 1910 01:15:43,939 --> 01:15:44,306 DIAGNOSIS. 1911 01:15:44,373 --> 01:15:46,208 IF YOU TREED WILL THEORETICAL 1912 01:15:46,275 --> 01:15:50,112 SOMETHING THAT'S BEEN DONE IN 1913 01:15:50,178 --> 01:15:52,547 THE LAB, CLINICIAN AND PATIENTS 1914 01:15:52,614 --> 01:15:53,615 WOULDN'T BE INTERESTED. 1915 01:15:53,682 --> 01:15:56,118 WE'RE STARTING TO SEE THAT. 1916 01:15:56,184 --> 01:16:04,693 I WILL BRING ARPA-H INTO THAT. 1917 01:16:04,760 --> 01:16:08,030 THE INTEREST WILL EXPLODE 1918 01:16:08,096 --> 01:16:09,298 BECAUSE EVENTUALLY WHAT I'M 1919 01:16:09,364 --> 01:16:12,434 GOING TO GIVE TO MY PATIENTS, 1920 01:16:12,501 --> 01:16:14,169 AND WE'RE GETTING THERE. 1921 01:16:14,236 --> 01:16:17,072 >> I HAVE A QUESTION FOR REBECCA 1922 01:16:17,139 --> 01:16:18,974 AND FOR THE COMMITTEE. 1923 01:16:19,041 --> 01:16:21,043 I'M VERY INTRIGUED BY THE AUDIT 1924 01:16:21,109 --> 01:16:24,212 THAT YOU PROPOSE TO DO AND IT'S 1925 01:16:24,279 --> 01:16:26,348 GOING TO PROVIDE A LOT OF USEFUL 1926 01:16:26,415 --> 01:16:28,617 INFORMATION BUT I WONDER IF YOU 1927 01:16:28,684 --> 01:16:30,752 THOUGHT ABOUT WHAT THE POTENTIAL 1928 01:16:30,819 --> 01:16:32,554 BARRIERS ARE TO THE ACQUISITION 1929 01:16:32,621 --> 01:16:34,589 OF INFORMATION OR WHAT YOUR 1930 01:16:34,656 --> 01:16:39,027 RESOURCES WILL BE IN ORDER TO 1931 01:16:39,094 --> 01:16:42,965 DETERMINE REALLY WHAT STRUCTURE 1932 01:16:43,031 --> 01:16:44,132 OF CURRENT CURRICULA MIGHT BE 1933 01:16:44,199 --> 01:16:46,902 AND MORE IMPORTANTLY IN TERMS OF 1934 01:16:46,969 --> 01:16:47,970 ACCESS THE LICENSING QUESTION, 1935 01:16:48,036 --> 01:16:51,306 HOW DOES ONE GET AT THAT 1936 01:16:51,373 --> 01:16:53,475 INFORMATION TO DETERMINE WHAT IS 1937 01:16:53,542 --> 01:16:54,943 ACTUALLY QUESTIONED ON THOSE 1938 01:16:55,010 --> 01:16:57,512 EXAMS, DO YOU HAVE ANY IDEAS OR 1939 01:16:57,579 --> 01:16:59,281 PERHAPS WE CAN THINK AS A GROUP 1940 01:16:59,348 --> 01:17:01,583 ABOUT WHERE WE MIGHT BEGIN TO 1941 01:17:01,650 --> 01:17:03,785 PROVIDE THOSE RESOURCES OR ASK 1942 01:17:03,852 --> 01:17:05,821 FOR THEM? 1943 01:17:05,887 --> 01:17:06,922 >> YES, GREAT. 1944 01:17:06,989 --> 01:17:09,224 THANK YOU. 1945 01:17:09,291 --> 01:17:12,160 WE STARTED WITH A DEEP DIVE OF 1946 01:17:12,227 --> 01:17:14,129 WHAT'S AVAILABLE ON THE WEB, SO 1947 01:17:14,196 --> 01:17:16,631 THERE IS A SHARED DOCUMENT IN 1948 01:17:16,698 --> 01:17:19,201 OUR WORKING SPACE THAT INCLUDES 1949 01:17:19,267 --> 01:17:24,306 LINKS TO ALL OF THOSE 1950 01:17:24,373 --> 01:17:25,507 ACCREDITING BODIES, LICENSING 1951 01:17:25,574 --> 01:17:27,743 BOARDS, JUST TO HAVE KIND OF A 1952 01:17:27,809 --> 01:17:30,112 START TO LOOK AT WHAT'S 1953 01:17:30,178 --> 01:17:32,114 CURRENTLY AVAILABLE ONLINE IN 1954 01:17:32,180 --> 01:17:34,649 TERMS OF RESOURCES AND STUDY 1955 01:17:34,716 --> 01:17:35,851 GUIDES THAT ARE OFFICIALLY 1956 01:17:35,917 --> 01:17:38,787 PROVIDED FOR STUDENTS AND 1957 01:17:38,854 --> 01:17:41,089 TRAINEES WHO ARE ENGAGING IN 1958 01:17:41,156 --> 01:17:42,090 THESE DIFFERENT DISCIPLINES, BUT 1959 01:17:42,157 --> 01:17:46,661 I AGREE WITH YOU THIS IS 1960 01:17:46,728 --> 01:17:49,164 DEFINITELY A CHALLENGE TO GET 1961 01:17:49,231 --> 01:17:49,464 INFORMATION. 1962 01:17:49,531 --> 01:17:51,266 I CAN SPEAK MORE SPECIFICALLY 1963 01:17:51,333 --> 01:17:53,001 FROM A MEDICAL SCHOOL 1964 01:17:53,068 --> 01:17:54,069 PERSPECTIVE. 1965 01:17:54,136 --> 01:17:55,337 I'M CURRENTLY A FOUNDING FACULTY 1966 01:17:55,404 --> 01:17:57,739 AT A NEW MEDICAL SCHOOL AND 1967 01:17:57,806 --> 01:17:59,808 WE'RE GOING THROUGH OUR 1968 01:17:59,875 --> 01:18:00,275 ACCREDITATION PROCESS. 1969 01:18:00,342 --> 01:18:02,544 WE HAVE ACCESS TO THE STANDARDS 1970 01:18:02,611 --> 01:18:05,947 AND ELEMENTS THAT ARE CURRENTLY 1971 01:18:06,014 --> 01:18:07,349 USED FOR ACCREDITING MEDICAL 1972 01:18:07,416 --> 01:18:09,518 SCHOOLS IN THE U.S., AND THAT 1973 01:18:09,584 --> 01:18:12,421 CAN BE A HELPFUL STARTING POINT 1974 01:18:12,487 --> 01:18:15,123 JUST TO GAIN RECOGNITION AT THAT 1975 01:18:15,190 --> 01:18:19,361 LEVEL, WHICH IS AN IMPORTANT 1976 01:18:19,428 --> 01:18:23,465 REVIEW AND WAY THAT SCHOOLS ARE 1977 01:18:23,532 --> 01:18:28,003 HELD ACCOUNTABLE TO THEIR 1978 01:18:28,070 --> 01:18:28,270 CURRICULA. 1979 01:18:28,336 --> 01:18:29,571 YES, I'D LIKE TO OPEN TO THE 1980 01:18:29,638 --> 01:18:31,139 FLOOR AND TAKE THIS OPPORTUNITY 1981 01:18:31,206 --> 01:18:33,742 OF US BEING TOGETHER TO WEIGH ON 1982 01:18:33,809 --> 01:18:34,810 BEST PRACTICES FOR GETTING THIS 1983 01:18:34,876 --> 01:18:36,678 DATA FROM ALL OF THESE DIFFERENT 1984 01:18:36,745 --> 01:18:38,547 STAKEHOLDERS AND I THINK IT'S 1985 01:18:38,613 --> 01:18:40,849 IMPORTANT ALSO TO MAKE SURE WE 1986 01:18:40,916 --> 01:18:41,950 KEEP NURSING AND THERAPY 1987 01:18:42,017 --> 01:18:43,485 STUDENTS IN MIND AS WELL. 1988 01:18:43,552 --> 01:18:46,655 THEY ARE AT THE FRONT LINES AND 1989 01:18:46,721 --> 01:18:51,593 ARE PLAYING A BIG ROLE IN 1990 01:18:51,660 --> 01:18:52,227 EDUCATING PATIENTS. 1991 01:18:52,294 --> 01:18:54,629 >> IS THERE A GOVERNING BODY 1992 01:18:54,696 --> 01:18:56,264 INVOLVED WITH THAT ACCREDITATION 1993 01:18:56,331 --> 01:18:58,100 PROCESS, THE MEDICAL SCHOOL 1994 01:18:58,166 --> 01:18:59,634 ACCREDITATION PROCESS? 1995 01:18:59,701 --> 01:19:02,604 WE CAN BE THINKING ABOUT THE 1996 01:19:02,671 --> 01:19:04,573 ENTITIES THAT WE CAN INVITE TO 1997 01:19:04,639 --> 01:19:06,675 OUR FUTURE MEETINGS TO BE ABLE 1998 01:19:06,741 --> 01:19:08,076 TO INTERROGATE THEM DIRECTLY AND 1999 01:19:08,143 --> 01:19:12,814 HAVE THEM GIVE US INFORMATION. 2000 01:19:12,881 --> 01:19:14,015 >> YES, THERE IS, AND ACROSS THE 2001 01:19:14,082 --> 01:19:15,984 OTHER DISCIPLINES AS WELL. 2002 01:19:16,051 --> 01:19:17,853 I THINK STARTING AT THAT MORE 2003 01:19:17,919 --> 01:19:18,787 OFFICIAL INSTITUTIONAL LEVEL 2004 01:19:18,854 --> 01:19:21,490 WILL BE KEY. 2005 01:19:21,556 --> 01:19:23,191 >> I WAS ASKING, FOR EXAMPLE, IN 2006 01:19:23,258 --> 01:19:25,994 YOUR NEW MEDICAL SCHOOL YOU SAID 2007 01:19:26,061 --> 01:19:28,497 YOU HAVE ACCESS TO ACCREDITATION 2008 01:19:28,563 --> 01:19:28,730 PROCESS. 2009 01:19:28,797 --> 01:19:29,564 WHO OVERSEES THAT? 2010 01:19:29,631 --> 01:19:32,467 IS THERE AN ENTITY THAT OVERSEES 2011 01:19:32,534 --> 01:19:38,273 THAT, THAT WE COULD CONVENE IN 2012 01:19:38,340 --> 01:19:39,207 THIS MEETING SPACE? 2013 01:19:39,274 --> 01:19:40,742 >> YES, WE COULD CALL THAT BODY 2014 01:19:40,809 --> 01:19:44,146 TO PROVIDE THEIR FEEDBACK BUT 2015 01:19:44,212 --> 01:19:46,448 ALSO THE SIMILAR OVERSEEING BODY 2016 01:19:46,515 --> 01:19:47,682 FOR NURSING AND THERAPIES. 2017 01:19:47,749 --> 01:19:49,718 >> OH, YES, OF COURSE. 2018 01:19:49,784 --> 01:19:50,519 >> ABSOLUTELY. 2019 01:19:50,585 --> 01:19:53,321 >> SO THINKING ABOUT THAT, 2020 01:19:53,388 --> 01:19:55,824 ACCME, THERE'S AN OSTEOPATHIC 2021 01:19:55,891 --> 01:19:57,726 VERSION ALSO. 2022 01:19:57,792 --> 01:20:00,629 BUT THEY ALSO OVERSEE REMOTE 2023 01:20:00,695 --> 01:20:06,835 CME, THEY MAY WELL HAVE DATA 2024 01:20:06,902 --> 01:20:10,772 THEY COULD DO A KEY WORD SEARCH, 2025 01:20:10,839 --> 01:20:13,608 HOW MANY CME CREDITS INVOLVE THE 2026 01:20:13,675 --> 01:20:14,709 WORD LYMPHATIC, THEY MAY WELL 2027 01:20:14,776 --> 01:20:16,044 HAVE DATA, THAT MIGHT BE A 2028 01:20:16,111 --> 01:20:17,245 MEASURABLE THING. 2029 01:20:17,312 --> 01:20:19,347 THAT MIGHT BE ACTUALLY LOOKING 2030 01:20:19,414 --> 01:20:21,850 AT THAT NUMBER IN TERMS OF 2031 01:20:21,917 --> 01:20:22,617 CONSUMERS OF THIS INFORMATION, 2032 01:20:22,684 --> 01:20:29,591 THAT MIGHT BE A USEFUL THING. 2033 01:20:29,658 --> 01:20:31,226 >> ALSO LONGITUDINALLY. 2034 01:20:31,293 --> 01:20:32,761 >> YES. 2035 01:20:32,827 --> 01:20:34,963 >> ONE THING TO DOVETAIL, I'LL 2036 01:20:35,030 --> 01:20:36,965 MENTION WE DISCUSSED EARLIER THE 2037 01:20:37,032 --> 01:20:38,099 IMPORTANCE OF KEEPING CURRENT 2038 01:20:38,166 --> 01:20:39,634 WITH THE KNOWLEDGE AND THOUGH 2039 01:20:39,701 --> 01:20:41,770 THERE MAY BE SOME EDUCATIONAL 2040 01:20:41,836 --> 01:20:45,006 COMPONENTS THAT ARE TALKED ABOUT 2041 01:20:45,073 --> 01:20:47,209 LYMPHATICS, IN OUR SPACE, IN THE 2042 01:20:47,275 --> 01:20:48,743 THERAPEUTIC AREA, SOMETIMES THAT 2043 01:20:48,810 --> 01:20:49,277 LYMPHATIC INFORMATION IS 2044 01:20:49,344 --> 01:20:50,312 ACTUALLY OLD INFORMATION. 2045 01:20:50,378 --> 01:20:52,914 SO WE NEED TO BE -- IT'S GOING 2046 01:20:52,981 --> 01:20:56,184 TO BE AN ADDED CHALLENGE TO JUST 2047 01:20:56,251 --> 01:20:57,319 KEEPING EVERYBODY CURRENT, 2048 01:20:57,385 --> 01:21:00,655 ANYONE WHO IS GOING TO 2049 01:21:00,722 --> 01:21:01,323 CONTINUING EDUCATION COURSE IN 2050 01:21:01,389 --> 01:21:03,325 2024 WOULD HOPE TO BE THE 2051 01:21:03,391 --> 01:21:04,593 RECEIVING THE MOST UP TO DATE, 2052 01:21:04,659 --> 01:21:06,161 SO IT IS A CHALLENGE. 2053 01:21:06,228 --> 01:21:09,197 I WANTED TO QUICKLY GO BACK TO 2054 01:21:09,264 --> 01:21:11,166 WHAT STEPHANIE HAD BEEN DRIVING 2055 01:21:11,233 --> 01:21:12,267 WITH CONNECTEDNESS. 2056 01:21:12,334 --> 01:21:13,668 SO FAR IT SEEMS LIKE AND GOING 2057 01:21:13,735 --> 01:21:16,671 TO CONTINUE TO SEE THIS WITH 2058 01:21:16,738 --> 01:21:17,739 DIFFERENT COMMITTEES, IS THE 2059 01:21:17,806 --> 01:21:18,907 IMPORTANCE OF CREATING SOME 2060 01:21:18,974 --> 01:21:20,542 LEVEL OF FRAMEWORK THAT MIGHT BE 2061 01:21:20,609 --> 01:21:22,043 LARGE AND THEN BREAKS DOWN INTO 2062 01:21:22,110 --> 01:21:23,712 CERTAIN AREAS THAT MIGHT BE MORE 2063 01:21:23,778 --> 01:21:26,681 SPECIFIC TO SOME OF THE 2064 01:21:26,748 --> 01:21:27,582 COMMITTEES, ACCOUNTABILITY THEN 2065 01:21:27,649 --> 01:21:29,751 WITH BEING ABLE TO ENSURE THAT 2066 01:21:29,818 --> 01:21:32,821 FRAMEWORK WILL BE ABLE TO LIVE 2067 01:21:32,887 --> 01:21:36,091 ON BUT SPECIFIC MEASURES OF 2068 01:21:36,157 --> 01:21:36,825 SUCCESS, AWARENESS OF IMPORTANCE 2069 01:21:36,891 --> 01:21:39,060 TO BE ABLE TO EVEN START TO DIVE 2070 01:21:39,127 --> 01:21:40,929 INTO IT, ACCESSIBILITY TO ALL 2071 01:21:40,996 --> 01:21:45,166 THE DIFFERENT COMPONENTS WHETHER 2072 01:21:45,233 --> 01:21:45,834 ACCESSIBILITY TO SCIENTIFIC 2073 01:21:45,900 --> 01:21:48,837 RIGOR SUCH AS EVEN WE WERE 2074 01:21:48,903 --> 01:21:50,338 TALKING ABOUT THE FEASIBILITY 2075 01:21:50,405 --> 01:21:52,874 WITH ACCESS TO FUNDING OR EVEN 2076 01:21:52,941 --> 01:21:55,443 ACCESSIBILITY TO THE EDUCATIONAL 2077 01:21:55,510 --> 01:21:57,979 COMPONENT ALL ACROSS DIFFERENT 2078 01:21:58,046 --> 01:21:58,847 STAKEHOLDERS, AND THEN 2079 01:21:58,913 --> 01:22:01,082 MARKETING, THAT'S A NEW ONE ON 2080 01:22:01,149 --> 01:22:02,384 MY AGENDA NOW, IMPORTANCE FOR 2081 01:22:02,450 --> 01:22:05,754 MARKING, SOME OF THE QUICK 2082 01:22:05,820 --> 01:22:08,523 THINGS I HAVE BEEN DIVING IN FOR 2083 01:22:08,590 --> 01:22:08,990 CONNECTIVENESS. 2084 01:22:09,057 --> 01:22:11,293 >> ONE MORE COMMENT AND WE'LL 2085 01:22:11,359 --> 01:22:12,027 MOVE ON. 2086 01:22:12,093 --> 01:22:12,527 >> THANK YOU. 2087 01:22:12,594 --> 01:22:17,132 I WANTED TO BRING UP THE IDEA OF 2088 01:22:17,198 --> 01:22:18,900 PUBLIC EDUCATION, BEING A 2089 01:22:18,967 --> 01:22:25,106 LYMPHATIC PATIENT MYSELF I'M 2090 01:22:25,173 --> 01:22:26,441 CONSTANTLY LYMPH-SPLAINING MY 2091 01:22:26,508 --> 01:22:27,375 CONDITION, AND OTHER PATIENTS 2092 01:22:27,442 --> 01:22:29,811 MAY NOT HAVE THE TOUCH POINT. 2093 01:22:29,878 --> 01:22:31,012 TOO IN THE MAINSTREAM PUBLIC 2094 01:22:31,079 --> 01:22:37,319 THERE ARE CERTAIN TOUCH POINTS 2095 01:22:37,385 --> 01:22:38,219 WITH LYMPHATICS, THERE'S GUASHA, 2096 01:22:38,286 --> 01:22:40,422 DRAINAGE, TV SHOWS LIKE MY 2097 01:22:40,488 --> 01:22:42,290 600-POUND LIFE WHERE PEOPLE HEAR 2098 01:22:42,357 --> 01:22:46,328 ABOUT IT THERE BUT THE DOTS ARE 2099 01:22:46,394 --> 01:22:47,562 NOT EXPECTED OR INFORMATION 2100 01:22:47,629 --> 01:22:49,497 ISN'T ACCURATE SO WE HAVE TO 2101 01:22:49,564 --> 01:22:51,466 CONSIDER -- I KNOW ALL THESE 2102 01:22:51,533 --> 01:22:52,467 COMMITTEES ALL BLEED TOGETHER 2103 01:22:52,534 --> 01:22:53,802 AND THE PUBLIC WILL HOPEFULLY 2104 01:22:53,868 --> 01:22:56,271 GET THE RUNOFF FROM WHAT WE'RE 2105 01:22:56,338 --> 01:22:58,273 ACCOMPLISHING BUT I THAT'S A BIG 2106 01:22:58,340 --> 01:23:00,575 THING HOW DO WE GET THE PUBLIC 2107 01:23:00,642 --> 01:23:02,310 TO UNDERSTAND THIS IS IMPORTANT, 2108 01:23:02,377 --> 01:23:05,680 THIS ISN'T JUST AT LEAST IN 2109 01:23:05,747 --> 01:23:07,182 LYMPHATIC PATIENTS NOT JUST SOME 2110 01:23:07,248 --> 01:23:10,385 SWELLING, YOU KNOW, IT AFFECTS 2111 01:23:10,452 --> 01:23:16,091 ALL ASPECTS OF OUR LIVES AND 2112 01:23:16,157 --> 01:23:18,126 DESERVES RECOGNITION, TREATMENT 2113 01:23:18,193 --> 01:23:23,798 AND CARE, MY TWO CENTS. 2114 01:23:23,865 --> 01:23:25,166 >> ARE THERE PSAs DONE? 2115 01:23:25,233 --> 01:23:26,401 THAT COULD BE A WAY TO GET 2116 01:23:26,468 --> 01:23:28,303 INFORMATION TO THE PUBLIC. 2117 01:23:28,370 --> 01:23:29,771 >> SPEAKING FOR LEARN, WE WERE 2118 01:23:29,838 --> 01:23:32,273 THE RECIPIENTS OF A GRANT FROM 2119 01:23:32,340 --> 01:23:35,343 THE CDC AND THERE'S REALLY BEEN 2120 01:23:35,410 --> 01:23:38,580 QUITE A BROAD ADAPTATION OF THE 2121 01:23:38,646 --> 01:23:39,347 PSA APPROACH. 2122 01:23:39,414 --> 01:23:45,787 IT'S SO CENTERED AT THE MOMENT 2123 01:23:45,854 --> 01:23:46,421 ON CANCER-RELATED LYMPHATIC, 2124 01:23:46,488 --> 01:23:48,857 IT'S A PIECE OF THE BY AS 2125 01:23:48,923 --> 01:23:49,958 OPPOSED TO THE WHOLE PIE BUT 2126 01:23:50,024 --> 01:23:51,793 IT'S A START. 2127 01:23:51,860 --> 01:23:52,927 >> I THANK THE EDUCATIONAL 2128 01:23:52,994 --> 01:23:54,462 IMPERATIVE COMMITTEE FOR THEIR 2129 01:23:54,529 --> 01:23:55,330 WORK AND THOUGHTFUL LAYOUT OF 2130 01:23:55,397 --> 01:23:59,000 THE NEXT MANY MONTHS. 2131 01:23:59,067 --> 01:24:00,668 THAT'S A NEXT TRANSITION TO THE 2132 01:24:00,735 --> 01:24:03,471 NEXT GROUP, THE PATIENT TOOLS 2133 01:24:03,538 --> 01:24:04,406 COMMITTEE REPRESENTATIVE CAN 2134 01:24:04,472 --> 01:24:07,542 TAKE THE PODIUM. 2135 01:24:17,485 --> 01:24:24,459 >> GOOD MORNING, EVERYONE. 2136 01:24:25,827 --> 01:24:27,862 PATIENT TOOLS COMMITTEE. 2137 01:24:27,929 --> 01:24:29,297 OUR VISION STATEMENT IS WE 2138 01:24:29,364 --> 01:24:31,499 ENVISION A FUTURE IN WHICH 2139 01:24:31,566 --> 01:24:35,003 PEOPLE LIVING WITH LYMPHATIC 2140 01:24:35,069 --> 01:24:37,138 DISEASES WILL HAVE ACCESS TO 2141 01:24:37,205 --> 01:24:38,273 TOOLS TO OPTIMIZE HEALTH AND 2142 01:24:38,339 --> 01:24:40,575 QUALITY OF LIFE, HAVE MEANINGFUL 2143 01:24:40,642 --> 01:24:41,242 AND PRODUCTIVE CONVERSATIONS 2144 01:24:41,309 --> 01:24:42,644 WITH HEALTH CARE PROVIDERS AND 2145 01:24:42,710 --> 01:24:47,115 MEANS TO ADVOCATE FOR THEMSELVES 2146 01:24:47,182 --> 01:24:50,185 AND CAREGIVERS TO BE ABLE TO 2147 01:24:50,251 --> 01:24:57,225 ADVOCATE FOR PERSONS THEY ARE 2148 01:24:57,292 --> 01:24:58,159 GIVING CARE. 2149 01:24:58,226 --> 01:25:00,428 THERE ARE SOME TOOLS OUT THERE 2150 01:25:00,495 --> 01:25:01,863 BUT ALL PATIENTS DON'T HAVE 2151 01:25:01,930 --> 01:25:04,699 KNOWLEDGE TO OR ACCESS TO THAT 2152 01:25:04,766 --> 01:25:07,202 INFORMATION SO HOW DO YOU LOOK 2153 01:25:07,268 --> 01:25:08,636 AT THE PATIENT'S NEEDS, NOT ONLY 2154 01:25:08,703 --> 01:25:11,339 WITH THE INFORMATION THAT THEY 2155 01:25:11,406 --> 01:25:13,741 NEED BUT ALSO THE TYPE OF ACCESS 2156 01:25:13,808 --> 01:25:17,612 THEY NEED BECAUSE EVERYONE MAY 2157 01:25:17,679 --> 01:25:19,147 NOT BE COMPUTER SAVVY TO GO 2158 01:25:19,214 --> 01:25:20,782 ONLINE TO GET THAT INFORMATION 2159 01:25:20,849 --> 01:25:22,584 SO HOW ARE WE GOING TO GET 2160 01:25:22,650 --> 01:25:24,285 INFORMATION TO PATIENTS IN TERMS 2161 01:25:24,352 --> 01:25:26,387 OF THERAPIES OUT THERE AND HOW 2162 01:25:26,454 --> 01:25:29,891 TO MANAGE THEIR LYMPHATIC 2163 01:25:29,958 --> 01:25:30,725 DISEASE. 2164 01:25:30,792 --> 01:25:31,826 NEXT SLIDE PLEASE. 2165 01:25:31,893 --> 01:25:33,595 SO, THE WHY. 2166 01:25:33,661 --> 01:25:36,197 SO, THIS GROUP EXISTS TO EDUCATE 2167 01:25:36,264 --> 01:25:40,869 AND EMPOWER ALL PEOPLE LIVING 2168 01:25:40,935 --> 01:25:41,769 WITH LYMPHATIC DISEASE TO 2169 01:25:41,836 --> 01:25:43,438 OPTIMIZE HEALTH AND QUALITY OF 2170 01:25:43,505 --> 01:25:46,307 LIFE AND IT'S IMPORTANT BECAUSE 2171 01:25:46,374 --> 01:25:47,609 THERE'S LIMITED AWARENESS OF 2172 01:25:47,675 --> 01:25:48,943 LYMPHATIC DISEASE, SOME PEOPLE 2173 01:25:49,010 --> 01:25:51,446 MAY HAVE IT AND DON'T KNOW THAT 2174 01:25:51,513 --> 01:25:53,381 THEY HAVE IT. 2175 01:25:53,448 --> 01:25:56,284 AND GENERAL PUBLIC HAS LITTLE 2176 01:25:56,351 --> 01:25:59,821 KNOWLEDGE ABOUT LYMPHATIC 2177 01:25:59,888 --> 01:26:01,122 DISEASE. 2178 01:26:01,189 --> 01:26:03,491 ALSO, SO PATIENTS HAVE A WAY TO 2179 01:26:03,558 --> 01:26:04,526 ADVOCATE FOR THEMSELVES. 2180 01:26:04,592 --> 01:26:06,995 AS A PATIENT I'VE BEEN HAVING 2181 01:26:07,061 --> 01:26:08,329 LYMPHATIC DISEASE FOR OVER 20 2182 01:26:08,396 --> 01:26:08,630 YEARS. 2183 01:26:08,696 --> 01:26:10,365 I'VE HAD TO JUST LEARN HOW TO 2184 01:26:10,431 --> 01:26:12,567 NOT ONLY MANAGE IT BUT ALSO 2185 01:26:12,634 --> 01:26:14,903 ADVOCATE WHEN I'M IN FRONT OF 2186 01:26:14,969 --> 01:26:16,638 PROVIDERS, LIKE EMERGENCY ROOM 2187 01:26:16,704 --> 01:26:18,573 VISITS, WHEN I'VE HAD 2188 01:26:18,640 --> 01:26:20,108 CELLULITIS, AND SO FORTH, AND 2189 01:26:20,174 --> 01:26:22,243 JUST KNOWING WHAT'S GOING ON 2190 01:26:22,310 --> 01:26:24,178 WITH MYSELF AND HOW TO EXPLAIN 2191 01:26:24,245 --> 01:26:25,413 TO THE PROVIDER THAT'S IN FRONT 2192 01:26:25,480 --> 01:26:28,082 OF ME WHAT'S GOING ON BECAUSE 2193 01:26:28,149 --> 01:26:31,119 THEY MAY HAVE LIMITED KNOWLEDGE 2194 01:26:31,185 --> 01:26:33,788 ABOUT LYMPHATIC DISEASE. 2195 01:26:33,855 --> 01:26:39,427 THE WORK CONNECTS TO THE NCLD 2196 01:26:39,494 --> 01:26:43,197 VISION BECAUSE THE STATEMENTS 2197 01:26:43,264 --> 01:26:44,499 ARE THE ULTIMATE BENEFICIARIES, 2198 01:26:44,566 --> 01:26:46,868 NEAT TO SUPPORT AND AND A HALF 2199 01:26:46,935 --> 01:26:48,736 GREAT CRITICAL CHALLENGES FOR 2200 01:26:48,803 --> 01:26:51,272 THEIR HEALTHCARE. 2201 01:26:51,339 --> 01:26:53,675 NEXT ONE PLEASE. 2202 01:26:53,741 --> 01:26:54,442 SO HOW. 2203 01:26:54,509 --> 01:26:55,510 WE MUST BETTER UNDERSTAND WHAT 2204 01:26:55,577 --> 01:26:57,378 THE PATIENT NEEDS FOR THEIR 2205 01:26:57,445 --> 01:27:00,582 EDUCATION, HOW TO BEST DELIVER 2206 01:27:00,648 --> 01:27:01,749 THAT INFORMATION AND I TOUCHED 2207 01:27:01,816 --> 01:27:04,919 ON THAT A MINUTE AGO. 2208 01:27:04,986 --> 01:27:06,788 EVERYONE LEARNS DIFFERENTLY AND 2209 01:27:06,854 --> 01:27:07,989 HAS DIFFERENT ACCESS SO HOW ARE 2210 01:27:08,056 --> 01:27:09,991 WE GOING TO GET THE PERSON THAT 2211 01:27:10,058 --> 01:27:15,463 IS NOT ONLINE OR THE PERSON 2212 01:27:15,530 --> 01:27:16,831 WHOSE PROVIDER DOESN'T HAVE MUCH 2213 01:27:16,898 --> 01:27:18,232 KNOWLEDGE HOW ARE WE GOING TO 2214 01:27:18,299 --> 01:27:27,842 GET INFORMATION ON HOW A PATIENT 2215 01:27:27,909 --> 01:27:29,844 BEST MANAGES THEIR LYMPHATICS 2216 01:27:29,911 --> 01:27:33,114 DISEASE, WHAT THEY ALREADY HAVE 2217 01:27:33,181 --> 01:27:34,415 ACCESS TO AND BARRIERS. 2218 01:27:34,482 --> 01:27:37,318 TO INCORPORATE THE WORK ALREADY 2219 01:27:37,385 --> 01:27:38,653 ACHIEVED, WE WILL LEVERAGE 2220 01:27:38,720 --> 01:27:41,189 RESOURCES AND MATERIALS ON 2221 01:27:41,255 --> 01:27:44,959 PATIENT ADVOCACY GROUPS, SOME OF 2222 01:27:45,026 --> 01:27:51,165 THOS ADVOCACY GROUPS MAY BE NIH, 2223 01:27:51,232 --> 01:27:54,102 NSF, AND SO ON. 2224 01:27:54,168 --> 01:27:55,670 STATE DEPARTMENTS OF HEALTH, 2225 01:27:55,737 --> 01:27:57,438 VERY NEW TO ME, DURING THIS 2226 01:27:57,505 --> 01:27:57,772 EFFORT. 2227 01:27:57,839 --> 01:27:58,773 SOME STATE DEPARTMENTS OF HEALTH 2228 01:27:58,840 --> 01:28:01,175 HAVE A LOT OF INFORMATION ON 2229 01:28:01,242 --> 01:28:03,244 THAT LYMPHATIC DISEASES ON THEIR 2230 01:28:03,311 --> 01:28:03,645 WEBSITE. 2231 01:28:03,711 --> 01:28:06,514 SOME DO, SOME DON'T. 2232 01:28:06,581 --> 01:28:08,149 AND WE'RE LOOKING INTO WHAT 2233 01:28:08,216 --> 01:28:11,352 INFORMATION IS ALREADY OUT 2234 01:28:11,419 --> 01:28:13,354 THERE, AND WHAT THEIR NEEDS ARE. 2235 01:28:13,421 --> 01:28:14,255 EVERY STATE DOESN'T HAVE THE 2236 01:28:14,322 --> 01:28:14,722 SAME THING. 2237 01:28:14,789 --> 01:28:18,459 SO WHEN YOU GO TO NEW YORK YOU 2238 01:28:18,526 --> 01:28:19,527 GET INFORMATION ON LYMPHATIC 2239 01:28:19,594 --> 01:28:22,764 DISEASE, HOW TO BEST MANAGE IT, 2240 01:28:22,830 --> 01:28:25,299 BUT PROBABLY IN NEW JERSEY, 2241 01:28:25,366 --> 01:28:26,534 DEPARTMENT OF HEALTH, YOU DON'T 2242 01:28:26,601 --> 01:28:29,170 FIND ANYTHING THERE. 2243 01:28:29,237 --> 01:28:33,441 HOW CAN WE BEST CENTRALIZE THAT 2244 01:28:33,508 --> 01:28:34,075 INFORMATION ON DIFFERENT STATES 2245 01:28:34,142 --> 01:28:42,083 DEPARTMENT OF HEALTH AND OTHER . 2246 01:28:42,150 --> 01:28:44,852 NEXT SLIDE. 2247 01:28:44,919 --> 01:28:47,555 BARRIERS. 2248 01:28:47,622 --> 01:28:50,558 FOLLOWING UNKNOWNS PROHIBIT 2249 01:28:50,625 --> 01:28:50,925 SUCCESS. 2250 01:28:50,992 --> 01:28:52,560 ECOSYSTEM OF LD, HOW TO BUILD 2251 01:28:52,627 --> 01:28:55,296 FOR DIVERSITY OF LEARNING 2252 01:28:55,363 --> 01:29:05,039 STYLES, VIDEO, LARGE TEXT FOR 2253 01:29:05,106 --> 01:29:07,875 VISUALLY IMPAIRED, AND SO FORTH, 2254 01:29:07,942 --> 01:29:09,877 WHAT PLATFORMS REACH THE MOST 2255 01:29:09,944 --> 01:29:12,280 PEOPLE AND THOSE NOT ON 2256 01:29:12,346 --> 01:29:12,547 PLATFORMS. 2257 01:29:12,613 --> 01:29:15,216 WE HAVEN'T TOUCHED ON THE 2258 01:29:15,283 --> 01:29:17,151 ECOSYSTEM AND ENSURING LIKE 2259 01:29:17,218 --> 01:29:19,721 ACCESS, CREATING DATABASES AND 2260 01:29:19,787 --> 01:29:23,324 REGISTRIES, THE NEED TO DO THAT. 2261 01:29:23,391 --> 01:29:24,292 FOLLOWING KNOWN ISSUES COULD 2262 01:29:24,358 --> 01:29:26,894 STAND IN OUR WAY, HOW TO BUILD 2263 01:29:26,961 --> 01:29:29,597 OR EQUIP PEOPLE WITH TOOLS WHO 2264 01:29:29,664 --> 01:29:32,133 DON'T EVEN KNOW THEY ARE PART OF 2265 01:29:32,200 --> 01:29:32,967 THE ECOSYSTEM. 2266 01:29:33,034 --> 01:29:34,669 WE TOUCHED ON THESE IN OUR 2267 01:29:34,736 --> 01:29:39,173 CONVERSATIONS A WHILE AGO, 2268 01:29:39,240 --> 01:29:40,041 MARKETING CAMPAIGNS, PUBLIC 2269 01:29:40,108 --> 01:29:42,977 TRANSPORT, THERE'S ALSO LACK OF 2270 01:29:43,044 --> 01:29:47,815 FUNDS, CONNECTIONS ALREADY MADE 2271 01:29:47,882 --> 01:29:48,983 PREVIOUSLY, PATIENT COMPLIANCE, 2272 01:29:49,050 --> 01:29:49,650 MANUFACTURERS WITH CONTINUED 2273 01:29:49,717 --> 01:29:55,289 INTEREST AND WHO IS GOING TO 2274 01:29:55,356 --> 01:29:56,591 CONTINUOUSLY MONITOR AND UPDATE 2275 01:29:56,657 --> 01:29:58,659 THESE TOOLS AS RESEARCH 2276 01:29:58,726 --> 01:29:59,427 ADVANCES. 2277 01:29:59,494 --> 01:30:01,496 NEXT SLIDE. 2278 01:30:01,562 --> 01:30:02,497 SO THE HOW. 2279 01:30:02,563 --> 01:30:05,032 WE NEED TO CONSIDER PERSPECTIVES 2280 01:30:05,099 --> 01:30:07,435 OF THE FOLLOWING GROUPS, LD 2281 01:30:07,502 --> 01:30:09,403 PATIENT COMMUNITY, PATIENT 2282 01:30:09,470 --> 01:30:12,006 ADVOCACY LEADERS, EDUCATORS, 2283 01:30:12,073 --> 01:30:15,109 PUBLIC HEALTH EXPERTS, 2284 01:30:15,176 --> 01:30:15,643 PHYSICIANS, MENTAL HEALTH 2285 01:30:15,710 --> 01:30:17,044 EXPERTS, A LOT OF TIMES YOU 2286 01:30:17,111 --> 01:30:19,881 FORGET THAT COMPONENT AND HOW IT 2287 01:30:19,947 --> 01:30:23,851 AFFECTS PEOPLE LIVING WITH 2288 01:30:23,918 --> 01:30:24,752 LYMPHATIC DISEASE. 2289 01:30:24,819 --> 01:30:30,057 ALSO RESEARCHERS, ANALOG DISEASE 2290 01:30:30,124 --> 01:30:32,760 GROUPS WHO HAVE SUCCESSFULLY PUT 2291 01:30:32,827 --> 01:30:37,698 EFFORTS FORWARD THAT HAVE BEEN 2292 01:30:37,765 --> 01:30:38,132 EFFECTIVE. 2293 01:30:38,199 --> 01:30:39,133 NEXT █SLIDE. 2294 01:30:39,200 --> 01:30:41,202 THERE WE GO. 2295 01:30:41,269 --> 01:30:43,905 PRIMARY CARE AND EMERGENCY 2296 01:30:43,971 --> 01:30:45,072 DEPARTMENTS, SOCIAL WORKERS, 2297 01:30:45,139 --> 01:30:47,408 HOLT HEALTH CARE PROVIDERS, 2298 01:30:47,475 --> 01:30:47,842 VASCULAR DOCTORS, 2299 01:30:47,909 --> 01:30:48,643 ENDOCRINOLOGISTS, HEALTH 2300 01:30:48,709 --> 01:30:56,017 INSURANCE COMPANIES AND CMS. 2301 01:30:56,083 --> 01:30:57,118 SO BASICALLY THE GROUPS 2302 01:30:57,185 --> 01:30:59,887 AFFECTED, AND THEY HAVE LIMITED 2303 01:30:59,954 --> 01:31:00,788 KNOWLEDGE ABOUT LYMPHATIC 2304 01:31:00,855 --> 01:31:03,791 DISEASES SO PROVIDING THEM WITH 2305 01:31:03,858 --> 01:31:08,963 EDUCATION IN THAT REGARD. 2306 01:31:09,030 --> 01:31:11,766 NEXT. 2307 01:31:22,043 --> 01:31:23,311 NEXT SLIDE. 2308 01:31:23,377 --> 01:31:27,415 WE MISSED THE PLAN FOR THE NEXT 2309 01:31:27,481 --> 01:31:27,682 YEAR. 2310 01:31:27,748 --> 01:31:29,517 STEPHANIE, DO YOU HAVE THAT? 2311 01:31:29,584 --> 01:31:31,552 >> I DON'T THINK I DO. 2312 01:31:31,619 --> 01:31:34,222 >> IS THAT PART OF THAT? 2313 01:31:34,288 --> 01:31:36,390 OVER THE NEXT YEAR WE PLAN TO 2314 01:31:36,457 --> 01:31:38,826 LOOK INTO WHAT TOOLS ARE 2315 01:31:38,893 --> 01:31:39,894 CURRENTLY AVAILABLE, AND WHAT 2316 01:31:39,961 --> 01:31:45,733 THE NEEDS ARE AND IDENTIFY THE 2317 01:31:45,800 --> 01:31:45,967 GAPS. 2318 01:31:46,033 --> 01:31:47,368 THERE ARE TOOLS AVAILABLE I 2319 01:31:47,435 --> 01:31:51,606 STARTED A LIST FOR WHICH I'LL 2320 01:31:51,672 --> 01:31:56,310 SHARE, AND ADVOCACY GROUPS AND 2321 01:31:56,377 --> 01:32:02,450 OTHER STATES AND OUR 2322 01:32:02,516 --> 01:32:04,318 ORGANIZATIONAL WEBSITES. 2323 01:32:04,385 --> 01:32:06,120 THAT'S PRETTY MUCH IT. 2324 01:32:06,187 --> 01:32:11,959 >> DO YOU WANT TO DO ONE LAST 2325 01:32:12,026 --> 01:32:12,159 SLIDE? 2326 01:32:12,226 --> 01:32:15,263 YOU HAVE YOUR PLAN HIGHLIGHTS. 2327 01:32:15,329 --> 01:32:17,331 >> ALL RIGHT. 2328 01:32:17,398 --> 01:32:20,401 WHERE WE ARE NOW IS WE'RE IN THE 2329 01:32:20,468 --> 01:32:22,470 STAGE OF AUDITS WHERE WE'RE 2330 01:32:22,536 --> 01:32:23,838 LOOKING AT EXISTING PATIENT 2331 01:32:23,905 --> 01:32:31,913 TOOLS AND WAYS OF EXPANDING 2332 01:32:31,979 --> 01:32:33,514 DEFINITION OF ECOSYSTEM LOOKING 2333 01:32:33,581 --> 01:32:37,718 FORWARD TO FALL OF NEXT YEAR, 2334 01:32:37,785 --> 01:32:41,956 CREATING INTERIM REPORT, AND 2335 01:32:42,023 --> 01:32:42,323 FINALIZING THAT. 2336 01:32:42,390 --> 01:32:44,825 SEEING IF THERE'S A NEED TO 2337 01:32:44,892 --> 01:32:46,027 ADJUST THAT, WHICH WE SHOULD 2338 01:32:46,093 --> 01:32:49,397 HAVE THEM TODAY AT THE SESSION, 2339 01:32:49,463 --> 01:32:55,202 IDENTIFYING PLATFORMS AND 2340 01:32:55,269 --> 01:32:57,305 FORMATS WE'LL USE, ALSO CRAFTING 2341 01:32:57,371 --> 01:32:58,739 RECOMMENDATIONS FOR FURTHER 2342 01:32:58,806 --> 01:33:00,441 RESEARCH, ANALYZING AUDIT REPORT 2343 01:33:00,508 --> 01:33:03,210 FINDINGS, IDENTIFYING GAPS IN 2344 01:33:03,277 --> 01:33:04,078 INFORMATION, REPORTING ISSUES 2345 01:33:04,145 --> 01:33:05,379 WE'RE LEARNING IN OUR TOWN 2346 01:33:05,446 --> 01:33:09,483 HALLS, SO WHEN WE DO A TOWN HALL 2347 01:33:09,550 --> 01:33:11,819 SPEAKING TO PATIENTS AND 2348 01:33:11,886 --> 01:33:14,155 HEALTHCARE PROVIDERS ABOUT SOME 2349 01:33:14,221 --> 01:33:19,193 OF THE CHALLENGES AND THEIR 2350 01:33:19,260 --> 01:33:20,728 NEEDS, ONE THING BROUGHT UP 2351 01:33:20,795 --> 01:33:23,464 PREVIOUSLY IS NUTRITION AND HOW 2352 01:33:23,531 --> 01:33:25,599 I THINK WE HAVE INCLUDED THAT IN 2353 01:33:25,666 --> 01:33:27,868 THE CONVERSATION AND HOW THAT 2354 01:33:27,935 --> 01:33:29,070 MAY BE AFFECTING LYMPHATIC 2355 01:33:29,136 --> 01:33:30,371 DISEASE AND THEN IN SEPTEMBER 2356 01:33:30,438 --> 01:33:35,843 WE'LL WRATH UP WITH OUR FINAL -- 2357 01:33:35,910 --> 01:33:41,983 WRAP UP WITH OUR FINAL REPORT 2358 01:33:42,049 --> 01:33:42,750 PRESENTED. 2359 01:33:42,817 --> 01:33:44,485 >> THANK YOU FOR REPRESENTING 2360 01:33:44,552 --> 01:33:45,486 THIS GROUP. 2361 01:33:45,553 --> 01:33:47,154 IN THIS CASE WE'LL OPEN THIS UP 2362 01:33:47,221 --> 01:33:50,157 TO FEEDBACK FROM THE ROOM BUT I 2363 01:33:50,224 --> 01:33:51,826 WANT TO POINT OUT THIS COMMITTEE 2364 01:33:51,892 --> 01:33:54,595 IS VERY HUNGRY FOR LEARNING, 2365 01:33:54,662 --> 01:33:54,996 RIGHT? 2366 01:33:55,062 --> 01:33:55,896 THEY HAVE OUTLINED STAKEHOLDERS 2367 01:33:55,963 --> 01:33:58,632 GROUPS WHERE THEY REALLY DO NEED 2368 01:33:58,699 --> 01:33:59,000 INFORMATION. 2369 01:33:59,066 --> 01:34:01,102 THIS IS A VERY CONNECTED AND 2370 01:34:01,168 --> 01:34:02,103 VERY WELL NETWORKED COMMITTEE SO 2371 01:34:02,169 --> 01:34:03,871 I WOULD JUST LIKE TO ENCOURAGE 2372 01:34:03,938 --> 01:34:05,506 EVERYONE TO THINK ABOUT WHO YOU 2373 01:34:05,573 --> 01:34:07,041 KNOW THAT YOU MIGHT WANT TO 2374 01:34:07,108 --> 01:34:09,110 CONNECT WITH THIS GROUP SO THEY 2375 01:34:09,176 --> 01:34:10,878 CAN PURSUE THEIR LEARNING PLAN. 2376 01:34:10,945 --> 01:34:13,781 AND WITH THAT I'LL OPEN IT UP TO 2377 01:34:13,848 --> 01:34:16,884 FEEDBACK FROM THE ROOM ON WHAT'S 2378 01:34:16,951 --> 01:34:22,123 WORKING, WHAT BUILDS WE HAVE AND 2379 01:34:22,189 --> 01:34:22,923 WHAT CONNECTION. 2380 01:34:22,990 --> 01:34:24,725 >> YEAH AS A SCIENTIST I'M 2381 01:34:24,792 --> 01:34:27,828 CURIOUS FROM PERSPECTIVE OF THE 2382 01:34:27,895 --> 01:34:29,296 PATIENTS, FROM MY VIEW IN THE 2383 01:34:29,363 --> 01:34:33,134 LAST, I DON'T KNOW, 25 YEARS, WE 2384 01:34:33,200 --> 01:34:36,370 HAVE BETTER MARKERS, ANIMAL 2385 01:34:36,437 --> 01:34:41,308 MODELS, WE KNOW GENES ARE 2386 01:34:41,375 --> 01:34:41,709 IMPORTANT. 2387 01:34:41,776 --> 01:34:43,677 I WONDER HOW THIS TRANSLATED IN 2388 01:34:43,744 --> 01:34:46,514 THE PATIENT SIDE. 2389 01:34:46,580 --> 01:34:50,351 I GUESS MAYBE DIAGNOSIS IS 2390 01:34:50,418 --> 01:34:53,988 BETTER, THIS IS THE GENE YOU MAY 2391 01:34:54,055 --> 01:34:56,157 HAVE AFFECTED AND THINGS LIKE 2392 01:34:56,223 --> 01:34:59,026 THAT, BETTER TOOLS, BETTER 2393 01:34:59,093 --> 01:35:00,728 COMPREHENSION MAYBE. 2394 01:35:00,795 --> 01:35:03,464 FROM THE TREATMENT SIDE, THE 2395 01:35:03,531 --> 01:35:04,765 TREATMENTS THAT THEY USE TODAY 2396 01:35:04,832 --> 01:35:08,302 ARE PROBABLY THE SAME USED 25 2397 01:35:08,369 --> 01:35:09,136 YEARS AGO, MASSAGE, GARMENTS, 2398 01:35:09,203 --> 01:35:12,740 THINGS LIKE THAT. 2399 01:35:12,807 --> 01:35:14,942 FROM THAT SIDE IT HASN'T BEEN 2400 01:35:15,009 --> 01:35:15,709 TRANSLATED WHAT WE LEARNED IN 2401 01:35:15,776 --> 01:35:18,446 THE LAB TO THE PATIENT SIDE AND 2402 01:35:18,512 --> 01:35:20,748 MAYBE THAT'S WHERE WE NEED TO 2403 01:35:20,815 --> 01:35:25,219 TRY TO FIGURE OUT WHY. 2404 01:35:25,286 --> 01:35:27,455 WHY HAS IT HAPPENED? 2405 01:35:27,521 --> 01:35:29,290 MAYBE USING ANIMAL MODELS STILL 2406 01:35:29,356 --> 01:35:32,993 THAT ASPECT IS STILL VERY 2407 01:35:33,060 --> 01:35:35,763 LIMITED SO WE KNOW THERE ARE 2408 01:35:35,830 --> 01:35:39,133 THINGS THAT MAY PROMOTE GROWTH 2409 01:35:39,200 --> 01:35:44,738 BUT THERE'S SOME COLLEAGUES 2410 01:35:44,805 --> 01:35:46,540 USING VARIOUS THINGS TO PROMOTE 2411 01:35:46,607 --> 01:35:48,576 GROWTH, LIKE DIETS, THERE'S A 2412 01:35:48,642 --> 01:35:51,011 HUGE GAP THERE, BUT LET'S FACE 2413 01:35:51,078 --> 01:35:52,613 IT IN THE SCIENTIFIC SIDE WE 2414 01:35:52,680 --> 01:35:56,450 NEED TO LEARN MORE, BETTER FIND 2415 01:35:56,517 --> 01:36:01,856 OUT HOW TO IMPROVE OR TREAT 2416 01:36:01,922 --> 01:36:03,791 THESE KIND OF CONDITIONS. 2417 01:36:03,858 --> 01:36:06,360 THIS IS AN ASPECT IS OF THAT IS 2418 01:36:06,427 --> 01:36:08,796 VERY IMPORTANT, TO FIGURE OUT 2419 01:36:08,863 --> 01:36:10,564 HOW TO QUICKLY TRANSLATE 2420 01:36:10,631 --> 01:36:12,099 FINDINGS FROM THE LAB TO YOUR 2421 01:36:12,166 --> 01:36:16,437 SIDE BECAUSE NOTHING HAS 2422 01:36:16,504 --> 01:36:17,004 CHANGED. 2423 01:36:17,071 --> 01:36:18,038 THAT'S MY VIEW. 2424 01:36:18,105 --> 01:36:22,276 >> I WONDER IF THERE'S A WAY TO 2425 01:36:22,343 --> 01:36:24,245 APPROACH FROM THE CMS SIDE. 2426 01:36:24,311 --> 01:36:27,515 I HAVE NO IDEA WHAT IS BILLABLE 2427 01:36:27,581 --> 01:36:29,917 AND THAT SEEMS TO DRIVE WHAT 2428 01:36:29,984 --> 01:36:31,986 HAPPENS IN THE EXAM ROOM. 2429 01:36:32,052 --> 01:36:35,289 IS THERE A CODE TO BILL FOR 30 2430 01:36:35,356 --> 01:36:36,157 MINUTES OF PATIENT EDUCATION 2431 01:36:36,223 --> 01:36:38,492 WHEN A PATIENT IS GOING THROUGH 2432 01:36:38,559 --> 01:36:39,560 CANCER TREATMENT, SOMEONE WILL 2433 01:36:39,627 --> 01:36:46,300 TELL THEM YOU MIGHT ENCOUNTER 2434 01:36:46,367 --> 01:36:50,671 LYMPHATIC, -- LYMPHEDEMA, THIS 2435 01:36:50,738 --> 01:36:55,009 IS WHAT YOU NEED TO LOOK FOR, OR 2436 01:36:55,075 --> 01:36:56,710 GENETICS, TO BEG AND PLEAD TO A 2437 01:36:56,777 --> 01:36:57,778 PLACE IN THE UNITED STATES THAT 2438 01:36:57,845 --> 01:37:00,014 CAN DO THAT TYPE OF TESTING. 2439 01:37:00,080 --> 01:37:02,583 >> THE SHORT ANSWER IS NO. 2440 01:37:02,650 --> 01:37:03,150 >> NO? 2441 01:37:03,217 --> 01:37:06,220 SO HOW CAN WE -- 2442 01:37:06,287 --> 01:37:08,222 >> AND FUNDAMENTALLY CO--CALLED 2443 01:37:08,289 --> 01:37:09,223 COGNITIVE MEDICINE WHICH REALLY 2444 01:37:09,290 --> 01:37:15,262 IS WHERE THIS FALLS IS VERY 2445 01:37:15,329 --> 01:37:16,230 UNDERREIMBURSED COMPARED TO 2446 01:37:16,297 --> 01:37:18,966 PROCEDURAL MEDICINE, SO THE 2447 01:37:19,033 --> 01:37:22,636 FAMILY PRACTITIONERS, PRIMARY 2448 01:37:22,703 --> 01:37:24,338 CARE PHYSICIANS, INTERNAL 2449 01:37:24,405 --> 01:37:27,841 MEDICINE SPECIALISTS ARE GOING 2450 01:37:27,908 --> 01:37:28,809 TO ABBREVIATE INTERACTIONS 2451 01:37:28,876 --> 01:37:35,049 BECAUSE THEY DON'T GET MUCH FOR 2452 01:37:35,115 --> 01:37:35,249 THAT. 2453 01:37:35,316 --> 01:37:37,384 >> FIFTEEN YEARS AGO DID I A 2454 01:37:37,451 --> 01:37:38,419 PRESENTATION, I DUG UP HOW YOU 2455 01:37:38,485 --> 01:37:39,086 GET A CODE. 2456 01:37:39,153 --> 01:37:41,388 THERE'S A PANEL OF PEOPLE AT 2457 01:37:41,455 --> 01:37:43,023 CMS, OUTSIDE PEOPLE LIKE AETNA 2458 01:37:43,090 --> 01:37:44,892 AND WHATEVER, IF WE CAN FIGURE 2459 01:37:44,959 --> 01:37:46,994 OUT A WAY TO INFILTRATE THAT 2460 01:37:47,061 --> 01:37:49,697 PROCESS AND PUT OUR TWO CENTS IN 2461 01:37:49,763 --> 01:37:50,564 WE COULD -- 2462 01:37:50,631 --> 01:37:52,900 >> WE ARE HOPING TO INVITE AT 2463 01:37:52,967 --> 01:37:54,735 SOME POINT CMS TO DIALOGUE WITH 2464 01:37:54,802 --> 01:37:56,470 US HERE AT PART OF THIS 2465 01:37:56,537 --> 01:37:57,805 COMMITTEE AND I THINK WE HAVE A 2466 01:37:57,871 --> 01:37:59,974 LOT OF QUESTIONS FOR THEM BUT I 2467 01:38:00,040 --> 01:38:01,842 THINK IT WOULD BE INTERESTING TO 2468 01:38:01,909 --> 01:38:02,276 KNOW. 2469 01:38:02,343 --> 01:38:03,644 MY UNDERSTANDING IS THE BROAD 2470 01:38:03,711 --> 01:38:05,179 PROBLEM IS THERE'S A LIMITED POT 2471 01:38:05,246 --> 01:38:08,782 OF MONEY AND IF YOU REALLOCATE 2472 01:38:08,849 --> 01:38:11,485 IT TO A NEW RECIPIENT THEN 2473 01:38:11,552 --> 01:38:13,687 YOU'RE TAKING IT AWAY FROM 2474 01:38:13,754 --> 01:38:14,421 SOMETHING ELSE. 2475 01:38:14,488 --> 01:38:16,290 WE HAVE TO FIGURE OUT WHAT THE 2476 01:38:16,357 --> 01:38:19,460 PROCESS IS, HOW WE CAN PITCH IN 2477 01:38:19,526 --> 01:38:21,128 AND DO THAT. 2478 01:38:21,195 --> 01:38:22,997 >> RESPONDING TO THE INVITE TO 2479 01:38:23,063 --> 01:38:25,633 SHARE SOME THINGS THAT MAY WORK, 2480 01:38:25,699 --> 01:38:26,934 FROM OUR EXPERIENCE AT THE 2481 01:38:27,001 --> 01:38:28,535 HEART, LUNG AND BLOOD INSTITUTE 2482 01:38:28,602 --> 01:38:30,604 WE FOUND THAT YOU CAN INCREASE 2483 01:38:30,671 --> 01:38:33,173 THE REACH TO PATIENTS WHO ARE 2484 01:38:33,240 --> 01:38:36,210 NOT ON PLATFORM SO THEY MAY NOT 2485 01:38:36,277 --> 01:38:42,916 HAVE ACCESS OR DON'T WANT TO 2486 01:38:42,983 --> 01:38:46,820 TALK TO PRACTITIONERS, BY FAITH 2487 01:38:46,887 --> 01:38:49,223 ORGANIZATIONS, BY OTHER WAYS, 2488 01:38:49,290 --> 01:38:50,224 TRUSTED PARTNERS IN THE 2489 01:38:50,291 --> 01:38:51,525 COMMUNITY. 2490 01:38:51,592 --> 01:38:54,695 FOR INSTANCE THERE WAS A LOT OF 2491 01:38:54,762 --> 01:38:56,830 SUCCESS WITH CONTROLLING 2492 01:38:56,897 --> 01:38:57,431 HYPERTENSION THROUGH 2493 01:38:57,498 --> 01:38:58,699 BARBERSHOPS, RIGHT? 2494 01:38:58,766 --> 01:39:01,969 MEN MAY NOT WANT TO GO AND ASK 2495 01:39:02,036 --> 01:39:05,572 THE DOCTOR BUT WILL LISTEN TO 2496 01:39:05,639 --> 01:39:08,809 THEIR BARBER AND MAY HAVE BLOOD 2497 01:39:08,876 --> 01:39:10,010 PRESSURE MEASURED, WE FUNDED 2498 01:39:10,077 --> 01:39:11,779 STUDIES LOOKING AT WHAT MAY WORK 2499 01:39:11,845 --> 01:39:13,013 IN TERMS OF PATIENT EDUCATION 2500 01:39:13,080 --> 01:39:14,415 AND THOSE ARE DIFFERENT TYPES OF 2501 01:39:14,481 --> 01:39:17,384 TOOLS THAN YOU WOULD HAVE 2502 01:39:17,451 --> 01:39:17,818 ONLINE. 2503 01:39:17,885 --> 01:39:22,523 AND THEY HAVE TO BE SPECIFICALLY 2504 01:39:22,589 --> 01:39:25,492 TAILORED TO THAT COMMUNITY. 2505 01:39:28,162 --> 01:39:31,598 >> JUST A QUICK POINT OF 2506 01:39:31,665 --> 01:39:32,900 CLARIFICATION, WITH PATIENT 2507 01:39:32,966 --> 01:39:34,234 TOOLS, IS THAT ALSO 2508 01:39:34,301 --> 01:39:35,636 COMPREHENSIVE OF JUST THE OTHER 2509 01:39:35,703 --> 01:39:39,139 TYPES OF TOOLS THAT CAN BE 2510 01:39:39,206 --> 01:39:41,575 UTILIZED IN CLINIC SPACE? 2511 01:39:41,642 --> 01:39:43,844 BEDSIDE, SO GOING FROM HEAVILY 2512 01:39:43,911 --> 01:39:46,580 EXPENSIVE BUT INVASIVE TYPE 2513 01:39:46,647 --> 01:39:49,583 OPPORTUNITIES, DRILLING DOWN, 2514 01:39:49,650 --> 01:39:51,352 AND WITH THAT THEN IT TAKES TIME 2515 01:39:51,418 --> 01:39:52,720 BUT INDUSTRY IS GOING TO BE A 2516 01:39:52,786 --> 01:40:00,461 GREAT ONE TO BRING INTO IT. 2517 01:40:00,527 --> 01:40:01,595 BIOSPECTROSCOPY IN THE UNITED 2518 01:40:01,662 --> 01:40:04,998 STATES IS NOT AVAILABLE SADLY 2519 01:40:05,065 --> 01:40:07,701 BUT THERE'S A NEW CPT CODE FOR 2520 01:40:07,768 --> 01:40:08,836 CLINICIANS UNDER CERTAIN 2521 01:40:08,902 --> 01:40:09,603 CIRCUMSTANCES, LIMITED ACCESS 2522 01:40:09,670 --> 01:40:11,138 BUT THAT'S CONTINUED TO GROW AND 2523 01:40:11,205 --> 01:40:14,308 BEING PUSHED BY THE INDUSTRY 2524 01:40:14,375 --> 01:40:18,412 SIDE BECAUSE THEY HAVE A REASON 2525 01:40:18,479 --> 01:40:21,081 AND MOTIVATION TO HELP WITH THAT 2526 01:40:21,148 --> 01:40:23,384 DID YOU BUT THERE'S DIFFERENT 2527 01:40:23,450 --> 01:40:23,984 OPPORTUNITIES. 2528 01:40:24,051 --> 01:40:24,852 >> YOU MADE ME THINK OF 2529 01:40:24,918 --> 01:40:29,289 SOMETHING WITH THE HELP. 2530 01:40:29,356 --> 01:40:30,758 WITH THE HYPERTENSION. 2531 01:40:30,824 --> 01:40:34,428 I KNOW PEOPLE WHO WORK IN CLINIC 2532 01:40:34,495 --> 01:40:36,096 ASSOCIATED WITH LARGE AMAZON 2533 01:40:36,163 --> 01:40:38,165 DISTRIBUTION CENTERS, THOUSANDS 2534 01:40:38,232 --> 01:40:40,267 OF PEOPLE WORKING 24-HOUR 2535 01:40:40,334 --> 01:40:42,870 SHIFTS, THEY DON'T SLEEP 2536 01:40:42,936 --> 01:40:43,971 PROPERLY, THERE'S UNTREATED 2537 01:40:44,037 --> 01:40:45,372 HYPERTENSION SEEN THERE BECAUSE 2538 01:40:45,439 --> 01:40:48,142 THESE PEOPLE ARE WORKING 2539 01:40:48,208 --> 01:40:49,209 PHYSICAL JOBS BUT DEFINITELY IF 2540 01:40:49,276 --> 01:40:50,844 YOU HAD A LYMPHATIC DISEASE YOU 2541 01:40:50,911 --> 01:40:53,614 MIGHT BE DRIVEN TO COME IN, 2542 01:40:53,680 --> 01:40:55,549 THERE ARE INFORMATIONAL TOOLS 2543 01:40:55,616 --> 01:40:58,085 ABOUT HYPERTENSION AVAILABLE IN 2544 01:40:58,152 --> 01:40:58,919 THOSE. 2545 01:40:58,986 --> 01:41:01,121 AMAZON HAS A STRONG INTEREST IN 2546 01:41:01,188 --> 01:41:02,256 CONTROLLING WHAT HAPPENS FOR 2547 01:41:02,322 --> 01:41:03,957 EVEN BUSINESS REASONS BUT 2548 01:41:04,024 --> 01:41:08,595 IMAGINE THAT WE COULD ALSO 2549 01:41:08,662 --> 01:41:12,099 PROVIDE EDUCATIONAL MATERIALS AT 2550 01:41:12,166 --> 01:41:13,767 THAT TYPE OF CLINIC, BUT 2551 01:41:13,834 --> 01:41:15,502 EVERYBODY IS CONNECTED TO AMAZON 2552 01:41:15,569 --> 01:41:16,136 IN SOME WALES. 2553 01:41:16,203 --> 01:41:18,906 IF YOU CAN USE THAT AS A TOOL 2554 01:41:18,972 --> 01:41:25,579 FOR EDUCATION IT WOULD EVEN BE 2555 01:41:25,646 --> 01:41:25,813 BROADER. 2556 01:41:25,879 --> 01:41:27,080 >> FOLLOWING UP, ONE PROBLEM WE 2557 01:41:27,147 --> 01:41:32,453 ALSO FACE HERE IS THE INTEREST 2558 01:41:32,519 --> 01:41:34,955 OF BIOTECH BIOTECH IS A DRIVER 2559 01:41:35,022 --> 01:41:36,290 AND WE HAVEN'T CONVINCED BIOTECH 2560 01:41:36,356 --> 01:41:38,659 THAT THIS IS A MARKET. 2561 01:41:38,725 --> 01:41:40,794 THAT'S A SERIOUS PROBLEM. 2562 01:41:40,861 --> 01:41:43,096 AND HOW TO DO IT, HOW TO CHANGE 2563 01:41:43,163 --> 01:41:46,300 IT I THINK IS SOMETHING WE NEED 2564 01:41:46,366 --> 01:41:48,602 TO SERIOUSLY THINK BECAUSE THE 2565 01:41:48,669 --> 01:41:52,206 FEW REPORTS I KNOW PEOPLE THAT 2566 01:41:52,272 --> 01:41:53,407 FOUND SOMETHING AND STARTED 2567 01:41:53,474 --> 01:41:54,608 THEIR OWN COMPANY, VERY 2568 01:41:54,675 --> 01:41:57,644 DIFFICULT TO MOVE FORWARD 2569 01:41:57,711 --> 01:42:02,816 QUICKLY AND EFFECTIVELY, SO IN 2570 01:42:02,883 --> 01:42:06,086 OUR CASE FOR EXAMPLE WE THOUGHT 2571 01:42:06,153 --> 01:42:08,489 WE HAVE A BIOMARKER, I DON'T 2572 01:42:08,555 --> 01:42:10,891 KNOW WHAT 400 BIOTECH COMPANIES 2573 01:42:10,958 --> 01:42:12,659 WERE APPROACHED, NONE SHOWED ANY 2574 01:42:12,726 --> 01:42:15,162 INTEREST, BECAUSE, AGAIN, THE 2575 01:42:15,229 --> 01:42:18,565 MARKET IS SMALL, THEY DON'T FEEL 2576 01:42:18,632 --> 01:42:21,168 THERE'S A VALUE ON THOSE KIND OF 2577 01:42:21,235 --> 01:42:21,401 THINGS. 2578 01:42:21,468 --> 01:42:26,073 SO I THINK THAT'S A MAJOR 2579 01:42:26,139 --> 01:42:29,276 CHALLENGE, WE NEED TO INVOLVE 2580 01:42:29,343 --> 01:42:30,611 BIOTECH BUT CONVINCE THEM THIS 2581 01:42:30,677 --> 01:42:33,113 IS FROM THE MONEY POINT OF VIEW 2582 01:42:33,180 --> 01:42:34,748 IS A GOOD MARKET. 2583 01:42:34,815 --> 01:42:36,049 I THINK THAT IT'S SOMETHING THAT 2584 01:42:36,116 --> 01:42:42,990 WE NEED TO FIND A WAY HOW TO DO 2585 01:42:43,056 --> 01:42:43,390 IT. 2586 01:42:43,457 --> 01:42:48,929 >> THERE MAY BE AN INDIRECT WAY 2587 01:42:48,996 --> 01:42:50,097 AROUND IT. 2588 01:42:50,163 --> 01:42:52,065 THE MAJOR IMPEDIMENT WAS THAT 2589 01:42:52,132 --> 01:42:52,799 THE INVESTMENT TO COMMERCIALIZE 2590 01:42:52,866 --> 01:42:55,669 THE ASSAY COULD NOT BE 2591 01:42:55,736 --> 01:42:57,004 ADEQUATELY PROTECTED BECAUSE 2592 01:42:57,070 --> 01:42:59,172 IT'S A NATURALLY OCCURRING 2593 01:42:59,239 --> 01:43:01,508 PROTEIN AND SO FORTH BUT IF YOU 2594 01:43:01,575 --> 01:43:03,076 ENERGIZE THE PATIENT COMMUNITY 2595 01:43:03,143 --> 01:43:03,744 SUFFICIENTLY THROUGH EDUCATION 2596 01:43:03,810 --> 01:43:08,382 TO SAY I WANT TO BE SCREENED FOR 2597 01:43:08,448 --> 01:43:14,421 LYMPHEDEMA, WHY CAN'T YOU DO 2598 01:43:14,488 --> 01:43:15,722 THIS BLOOD TEST, THAT REVERSE 2599 01:43:15,789 --> 01:43:17,791 BUBBLING UP HAS WORKED IN HIV 2600 01:43:17,858 --> 01:43:19,426 AND BREAST CANCER, WHERE 2601 01:43:19,493 --> 01:43:23,497 ACTIVISM WITHIN THE PATIENT 2602 01:43:23,564 --> 01:43:25,332 COMMUNITY COULD ACTUALLY EXERT 2603 01:43:25,399 --> 01:43:28,101 CHANGE EVEN WHEN THE COMMERCIAL 2604 01:43:28,168 --> 01:43:30,938 INTERESTS ARE NOT AS PROFOUND. 2605 01:43:31,004 --> 01:43:32,472 >> HOW CAN WE ACCOMPLISH THAT? 2606 01:43:32,539 --> 01:43:34,575 >> I THINK THROUGH EDUCATION OF 2607 01:43:34,641 --> 01:43:35,542 THE COMMUNITY, THROUGH AFFECTED 2608 01:43:35,609 --> 01:43:37,444 PATIENT COMMUNITY AND MORE 2609 01:43:37,511 --> 01:43:39,079 BROADLY OF THE COMMUNITY AT 2610 01:43:39,146 --> 01:43:41,081 LARGE SO IT'S COMING AT IT THE 2611 01:43:41,148 --> 01:43:42,249 OTHER WAY. 2612 01:43:42,316 --> 01:43:44,284 I THINK WE NEED TO LEVERAGE 2613 01:43:44,351 --> 01:43:45,619 PATIENTS TO EDUCATE THEIR 2614 01:43:45,686 --> 01:43:48,121 HEALTHCARE PROVIDERS ON THE 2615 01:43:48,188 --> 01:43:50,324 LEVEL OF IGNORANCE WHICH THEY 2616 01:43:50,390 --> 01:43:51,725 ARE CURRENTLY WORKING. 2617 01:43:51,792 --> 01:43:53,694 IT'S THE SAME PROCESS OF MAKE 2618 01:43:53,760 --> 01:43:56,797 THEM LEARN WHAT THEY DON'T THINK 2619 01:43:56,863 --> 01:44:03,136 THEY WANT TO KNOW IS 2620 01:44:03,203 --> 01:44:04,438 FUNDAMENTALLY THE CONCEPT. 2621 01:44:04,504 --> 01:44:06,506 >> I WAS GOING SAY I WONDER IF 2622 01:44:06,573 --> 01:44:07,608 THE OPPORTUNITY BECAUSE THE 2623 01:44:07,674 --> 01:44:09,242 PATIENTS WILL BE THE MOST VOCAL 2624 01:44:09,309 --> 01:44:10,911 MOST LIKELY TO BE PAID ATTENTION 2625 01:44:10,978 --> 01:44:13,714 TO AS WE SORT OF EMPOWER THE 2626 01:44:13,780 --> 01:44:14,815 PATIENT POPULATION TO GET LOUD 2627 01:44:14,881 --> 01:44:16,283 REALLY ABOUT THE THINGS GOING 2628 01:44:16,350 --> 01:44:17,618 ON, IT'S REALLY IMPORTANT TO 2629 01:44:17,684 --> 01:44:20,153 MAKE SURE THAT WE ARM THEM WITH 2630 01:44:20,220 --> 01:44:22,289 THE BEST INFORMATION TO SAY YOU 2631 01:44:22,356 --> 01:44:24,825 ARE THE ONES WHO SHOULD BE 2632 01:44:24,891 --> 01:44:26,793 ADVOCATING THAT THERE'S BETTER 2633 01:44:26,860 --> 01:44:28,462 TREATMENT AND DIAGNOSTICS NEED, 2634 01:44:28,528 --> 01:44:30,831 TO GUILLERMO'S POINT WE DON'T 2635 01:44:30,897 --> 01:44:32,599 KNOW THE WAYS LYMPHATIC DISEASE 2636 01:44:32,666 --> 01:44:35,769 COULD BE AFFECTING THINGS. 2637 01:44:35,836 --> 01:44:38,171 NOT JUST THE PATIENT SIDE, HEY, 2638 01:44:38,238 --> 01:44:39,706 MAYBE MY HEART DISEASE, NO ONE 2639 01:44:39,773 --> 01:44:42,142 KNOWS WHAT'S GOING ON, COULD BE 2640 01:44:42,209 --> 01:44:43,944 LYMPHATIC, THAT'S GOING TO BE 2641 01:44:44,011 --> 01:44:45,178 WITHIN THE PATIENT POPULATION, A 2642 01:44:45,245 --> 01:44:46,380 POPULATION IN GENERAL WHEN THEY 2643 01:44:46,446 --> 01:44:55,355 GET LOUD MAY BE LIST ENED TO. 2644 01:44:55,422 --> 01:44:57,157 >> THE QUESTION GUILLERMO WAS 2645 01:44:57,224 --> 01:45:02,262 ASKING HOW THE PATIENTS ARE 2646 01:45:02,329 --> 01:45:03,330 GETTING INFORMATION WHEN CERTAIN 2647 01:45:03,397 --> 01:45:04,965 TREATMENTS ARE AVAILABLE. 2648 01:45:05,032 --> 01:45:08,168 FROM MY EXPERIENCE, WE'RE NOT. 2649 01:45:08,235 --> 01:45:09,703 LIKE WHEN I RESEARCHED MYSELF 2650 01:45:09,770 --> 01:45:11,872 DIFFERENT TREATMENTS OR WHAT 2651 01:45:11,938 --> 01:45:14,541 TREATMENTS ARE AVAILABLE FOR 2652 01:45:14,608 --> 01:45:18,979 LYMPHATIC, I FOUND THAT 2653 01:45:19,046 --> 01:45:20,847 ACUPUNCTURE WAS ONE THING BEING 2654 01:45:20,914 --> 01:45:23,350 INVESTIGATED, I WENT AND I DID 2655 01:45:23,417 --> 01:45:23,684 ACUPUNCTURE. 2656 01:45:23,750 --> 01:45:27,220 AND THEN I FOUND OUT THAT THERE 2657 01:45:27,287 --> 01:45:30,590 WERE ADVANCES WITH LYMPH NODE 2658 01:45:30,657 --> 01:45:31,591 TRANSFER, AND LIPOSUCTION, AND 2659 01:45:31,658 --> 01:45:35,996 SO I LOOKED INTO THAT. 2660 01:45:36,063 --> 01:45:38,498 I FOUND OUT, OH, THERE ARE EVEN 2661 01:45:38,565 --> 01:45:39,466 DRUGS BEING USED. 2662 01:45:39,533 --> 01:45:41,468 WHY AM I NOT GETTING THIS 2663 01:45:41,535 --> 01:45:42,035 INFORMATION? 2664 01:45:42,102 --> 01:45:44,071 WHY AM I HAVING TO SEARCH? 2665 01:45:44,137 --> 01:45:45,806 I'M NOT SEARCHING EVERY DAY, 2666 01:45:45,872 --> 01:45:48,008 LIKE PERIODICALLY EVERY FEW 2667 01:45:48,075 --> 01:45:51,945 YEARS, WHAT NEW ADVANCES IN 2668 01:45:52,012 --> 01:45:52,479 LYMPHEDEMA? 2669 01:45:52,546 --> 01:45:53,680 IT WAS LIFE-CHANGING FOR ME 2670 01:45:53,747 --> 01:45:55,682 GETTING THIS INFORMATION, LIKE 2671 01:45:55,749 --> 01:45:59,853 MY LYMPHATIC ARM IS SMALLER THAN 2672 01:45:59,920 --> 01:46:03,423 MY OTHER ARM THAT HASN'T BEEN 2673 01:46:03,490 --> 01:46:05,092 AFFECTED, AND THIS IS 20+ YEARS 2674 01:46:05,158 --> 01:46:06,059 IN THE MAKING. 2675 01:46:06,126 --> 01:46:07,928 I KNOW THERE'S SO MUCH 2676 01:46:07,994 --> 01:46:08,795 INFORMATION OUT THERE. 2677 01:46:08,862 --> 01:46:12,499 I DON'T KNOW MANY PEOPLE WITH 2678 01:46:12,566 --> 01:46:14,701 LYMPHEDEMA BUT IF I DID I WOULD 2679 01:46:14,768 --> 01:46:16,103 PASS THAT INFORMATION ALONG. 2680 01:46:16,169 --> 01:46:20,507 I DON'T THINK IT'S THAT PATIENTS 2681 01:46:20,574 --> 01:46:21,708 AREN'T EXCITED ABOUT SCREENING. 2682 01:46:21,775 --> 01:46:23,310 WE NEED THIS. 2683 01:46:23,376 --> 01:46:25,045 IT'S JUST THAT PATIENTS DON'T 2684 01:46:25,112 --> 01:46:25,746 KNOW WHAT'S AVAILABLE ALL THE 2685 01:46:25,812 --> 01:46:31,384 TIME. 2686 01:46:31,451 --> 01:46:37,124 >> TRYING TO CONNECT THREADS TO 2687 01:46:37,190 --> 01:46:38,658 GET A TRIPLE-WORD SCORE. 2688 01:46:38,725 --> 01:46:43,797 THE ONLY THING LESS RELIABLE 2689 01:46:43,864 --> 01:46:44,664 THAN THE INTERNET, WHAT'S GOING 2690 01:46:44,731 --> 01:46:48,101 TO WORK, IS ASKING A RESEARCH 2691 01:46:48,168 --> 01:46:48,602 INVESTIGATORS. 2692 01:46:48,668 --> 01:46:50,470 WITH ALL DUE RESPECT TO MY 2693 01:46:50,537 --> 01:46:51,938 COLLEAGUES ALL OF US BELIEVE THE 2694 01:46:52,005 --> 01:46:54,441 THING WE'RE STUDYING IS THE 2695 01:46:54,508 --> 01:46:57,177 UNIFYING THEORY OF EVERYTHING 2696 01:46:57,244 --> 01:46:59,012 AND IS THE POST IMPORTANT 2697 01:46:59,079 --> 01:46:59,412 MOLECULE. 2698 01:46:59,479 --> 01:47:03,416 THERE'S A SENSE IN WHICH A 2699 01:47:03,483 --> 01:47:04,084 DIRECT-TO-CONSUMER SCIENCE 2700 01:47:04,151 --> 01:47:05,385 PIPELINE SOMETIMES MAY NOT BE 2701 01:47:05,452 --> 01:47:06,453 THE BEST SOLUTION BUT THE 2702 01:47:06,520 --> 01:47:09,956 QUESTION IS HOW DO YOU EVALUATE 2703 01:47:10,023 --> 01:47:14,828 WHAT IS READY TO EDUCATE THE 2704 01:47:14,895 --> 01:47:16,563 PUBLIC IN, RIGHT, AND THE USER 2705 01:47:16,630 --> 01:47:17,164 IN? 2706 01:47:17,230 --> 01:47:19,065 IF WE SAY TO CYNTHIA WE'RE GOING 2707 01:47:19,132 --> 01:47:21,768 TO EDUCATE YOU ON LYMPHATIC 2708 01:47:21,835 --> 01:47:24,838 DISEASES, ALL OF IT, THAT'S TOO 2709 01:47:24,905 --> 01:47:25,038 MUCH. 2710 01:47:25,105 --> 01:47:26,206 AND THERE'S FRANKLY TOO MUCH IN 2711 01:47:26,273 --> 01:47:27,207 THE LANDSCAPE. 2712 01:47:27,274 --> 01:47:29,142 THE QUESTION IS WHAT'S READY? 2713 01:47:29,209 --> 01:47:32,279 AND SO IF YOU HAVE DONE WORK 2714 01:47:32,345 --> 01:47:34,014 WITH NASA OR DEPARTMENT OF 2715 01:47:34,080 --> 01:47:34,948 DEFENSE ON DEVELOPMENT OF 2716 01:47:35,015 --> 01:47:37,751 TECHNOLOGY THEY HAVE SOMETHING 2717 01:47:37,818 --> 01:47:38,852 CALLED TECHNOLOGY READINESS 2718 01:47:38,919 --> 01:47:39,619 LEVEL, TRL. 2719 01:47:39,686 --> 01:47:42,122 THAT SPEAKS TO WHERE IT IS IN 2720 01:47:42,189 --> 01:47:43,723 THE PIPELINE FROM INCEPTION TO 2721 01:47:43,790 --> 01:47:46,126 THIS THING IS READY TO GIVE THE 2722 01:47:46,193 --> 01:47:48,829 ARMY A MILLION OF THESE THINGS 2723 01:47:48,895 --> 01:47:50,363 AND THESE ARE RUGGED THINGS AND 2724 01:47:50,430 --> 01:47:53,433 I WONDER IF SOMETHING SIMILAR 2725 01:47:53,500 --> 01:47:54,835 FOR IDEAS OR INTERVENTIONS 2726 01:47:54,901 --> 01:47:56,169 COULDN'T BE DONE HERE BECAUSE IF 2727 01:47:56,236 --> 01:47:58,672 THERE'S SOMETHING THAT HAS LIKE 2728 01:47:58,738 --> 01:48:00,874 AN IDEA OR INTERVENTION OR 2729 01:48:00,941 --> 01:48:02,843 BIOMARKER READINESS LEVEL OF 2730 01:48:02,909 --> 01:48:04,811 SCALE 0-10, CALL IT 2, WHICH IS 2731 01:48:04,878 --> 01:48:06,346 WHERE THE ALZHEIMER'S THING IS 2732 01:48:06,413 --> 01:48:07,013 RIGHT NOW, RIGHT? 2733 01:48:07,080 --> 01:48:08,849 WE'RE WAY EARLY IN THE PROCESS. 2734 01:48:08,915 --> 01:48:10,717 THAT'S SOMETHING THAT YOU CAN 2735 01:48:10,784 --> 01:48:12,018 GET PEOPLE EXCITED ABOUT BUT 2736 01:48:12,085 --> 01:48:13,019 THEY SHOULDN'T BE TALKING TO 2737 01:48:13,086 --> 01:48:14,788 CLINICIANS ABOUT IT. 2738 01:48:14,855 --> 01:48:16,389 WE'RE DECADES FROM THAT. 2739 01:48:16,456 --> 01:48:17,357 NOT DECADES, WE'RE MANY YEARS 2740 01:48:17,424 --> 01:48:18,825 FROM THAT. 2741 01:48:18,892 --> 01:48:21,561 IF YOU HAVE A BIOMARKER THAT'S 2742 01:48:21,628 --> 01:48:29,236 PROMISING AN INNATE, IT'S 2743 01:48:29,302 --> 01:48:29,870 MISSING COMMERCIALIZATION, 2744 01:48:29,936 --> 01:48:37,777 BECAUS IT'S AN 8, IT'S SOMETHING 2745 01:48:37,844 --> 01:48:39,746 CLINICIANS COULD BE EDUCATED 2746 01:48:39,813 --> 01:48:43,516 AND PATIENTS EXCITED ABOUT. 2747 01:48:43,583 --> 01:48:45,819 IF WE HAD ABILITY TO ATTACH A 2748 01:48:45,886 --> 01:48:47,587 READINESS LEVEL IT WOULD HELP US 2749 01:48:47,654 --> 01:48:49,890 KNOW A READY WIN, AN EASY WIN, 2750 01:48:49,956 --> 01:48:54,561 SOMETHING YOU COULD GET LEVERAGE 2751 01:48:54,628 --> 01:48:57,564 IN VERSUS SOMETHING MORE 2752 01:48:57,631 --> 01:48:58,698 ASPIRATIONAL. 2753 01:48:58,765 --> 01:48:59,032 >> REBECCA? 2754 01:48:59,099 --> 01:48:59,399 >> THANK YOU. 2755 01:48:59,466 --> 01:49:02,702 I WANTED TO CHIME IN ON 2756 01:49:02,769 --> 01:49:04,871 READINESS LEVELS AND READY FOR 2757 01:49:04,938 --> 01:49:05,972 PRIME-TIME INFORMATION, ONE 2758 01:49:06,039 --> 01:49:07,474 IMPORTANT THING TO CONSIDER IS 2759 01:49:07,540 --> 01:49:09,442 A.I. AND ACCESS TO INFORMATION 2760 01:49:09,509 --> 01:49:12,245 AND HOW THAT'S TRANSFORMING HOW 2761 01:49:12,312 --> 01:49:13,780 PEOPLE GET THEIR INFORMATION. 2762 01:49:13,847 --> 01:49:17,250 SO, I DON'T HAVE ANY ANSWERS TO 2763 01:49:17,317 --> 01:49:18,385 THIS IMPORTANT QUESTION BUT HOW 2764 01:49:18,451 --> 01:49:20,620 WILL THE WORK OF THE COMMISSION 2765 01:49:20,687 --> 01:49:22,889 TAKE THIS INTO ACCOUNT IN TERMS 2766 01:49:22,956 --> 01:49:25,525 OF EDUCATIONAL INITIATIVES AND 2767 01:49:25,592 --> 01:49:27,827 PATIENT TOOLS GIVEN THAT A LOT 2768 01:49:27,894 --> 01:49:32,132 OF PEOPLE WILL LIKELY SOON HAVE 2769 01:49:32,198 --> 01:49:34,467 THAT ON THEIR SMARTPHONE, OTHER 2770 01:49:34,534 --> 01:49:37,504 DEVICES AND BE READY USING A.I. 2771 01:49:37,570 --> 01:49:39,906 TO ANSWER THEIR QUESTIONS ABOUT 2772 01:49:39,973 --> 01:49:46,479 LYMPHATIC SYSTEM AND LYMPHATIC 2773 01:49:46,546 --> 01:49:46,746 DISEASES. 2774 01:49:46,813 --> 01:49:48,848 >> THE POINT EARLIER ABOUT 2775 01:49:48,915 --> 01:49:51,718 IMPORTANCE OF PATIENTS 2776 01:49:51,785 --> 01:49:52,452 ADVOCATING, THE LYMPHEDEMA 2777 01:49:52,519 --> 01:49:55,455 PATIENTS, THAT'S MY BIAS IN THAT 2778 01:49:55,522 --> 01:49:57,524 COMMUNITY, IN THE LIP DEEM A 2779 01:49:57,590 --> 01:50:00,126 COMMUNITY, PEOPLE KNOW WHAT THEY 2780 01:50:00,193 --> 01:50:02,529 ARE LIVING WITH AND THEY ARE 2781 01:50:02,595 --> 01:50:04,297 USUALLY NOT AFRAID TO SPEAK UP, 2782 01:50:04,364 --> 01:50:07,100 BUT IT'S THE ONES I'M THE 2783 01:50:07,167 --> 01:50:10,570 OPPOSITE OF CYNTHIA, I HAVE 2784 01:50:10,637 --> 01:50:13,139 LYMPHEDEMA, I ONE A BLOG IN MY 2785 01:50:13,206 --> 01:50:14,307 SPARE TIME, I'M SATURATED. 2786 01:50:14,374 --> 01:50:15,775 I HAVE A LOT OF FRIEND IN THE 2787 01:50:15,842 --> 01:50:16,543 PATIENT COMMUNITY. 2788 01:50:16,609 --> 01:50:18,178 IT'S ALL WE TALK ABOUT. 2789 01:50:18,244 --> 01:50:20,046 SO I THINK IT'S KIND OF BRIDGING 2790 01:50:20,113 --> 01:50:22,582 THAT SO PATIENTS WHO DON'T HAVE 2791 01:50:22,649 --> 01:50:24,217 TOOLS TO EVEN -- THIS IS JUMPING 2792 01:50:24,284 --> 01:50:25,852 AHEAD TO COMMUNITY GROWTH LATER 2793 01:50:25,919 --> 01:50:29,456 ON, BUT TO KNOW WHAT'S OUT THERE 2794 01:50:29,522 --> 01:50:33,159 THAT THERE'S A NON-PROFIT FOR 2795 01:50:33,226 --> 01:50:34,761 PEDIATRIC LYMPHEDEMA AND CREATED 2796 01:50:34,828 --> 01:50:37,764 A ROADMAP ON THE WEBSITE FOR 2797 01:50:37,831 --> 01:50:38,865 FAMILIES TO DOWNLOAD, SHOWS HOW 2798 01:50:38,932 --> 01:50:40,433 YOU MOVE THROUGH GETTING A 2799 01:50:40,500 --> 01:50:41,201 DIAGNOSIS, GETTING INTO 2800 01:50:41,267 --> 01:50:41,468 TREATMENT. 2801 01:50:41,534 --> 01:50:43,269 AND I THINK THOSE ARE THE THINGS 2802 01:50:43,336 --> 01:50:45,839 I HEAR THE MOST FROM OTHER 2803 01:50:45,905 --> 01:50:47,841 PATIENTS, ESPECIALLY NEW ONES, 2804 01:50:47,907 --> 01:50:49,609 INTO THE COMMUNITIES, WHERE DO I 2805 01:50:49,676 --> 01:50:50,343 EVEN GET TREATMENT? 2806 01:50:50,410 --> 01:50:51,311 WHAT IS THE TREATMENT? 2807 01:50:51,378 --> 01:50:53,046 I DON'T KNOW WHERE TO START. 2808 01:50:53,113 --> 01:50:56,082 IF THEY ARE IN A RURAL AREA, 2809 01:50:56,149 --> 01:50:57,217 IT'S EVEN HARDER. 2810 01:50:57,283 --> 01:51:01,621 IF WE HAD SOME KIND OF SOURCE OF 2811 01:51:01,688 --> 01:51:03,156 TRUTH REPOSITORY, LEARN HAS A 2812 01:51:03,223 --> 01:51:07,627 LOT OF GREAT ONCE AT ENTERS OF 2813 01:51:07,694 --> 01:51:08,728 EXCELLENCE, LYMPHEDEMA 2814 01:51:08,795 --> 01:51:09,829 FOUNDATION, SOMETHING PATIENTS 2815 01:51:09,896 --> 01:51:11,364 CAN TRUST THIRST WHERE THEY CAN 2816 01:51:11,431 --> 01:51:12,465 GET QUALITY INFORMATION THAT'S 2817 01:51:12,532 --> 01:51:14,200 UP TO DATE, WHETHER IT'S READY 2818 01:51:14,267 --> 01:51:16,369 OR NOT, WE'D LIKE IT TO BE READY 2819 01:51:16,436 --> 01:51:17,804 OF COURSE BUT THEY KNOW THAT'S 2820 01:51:17,871 --> 01:51:20,707 WHERE THEY CAN GO TO GET THAT 2821 01:51:20,774 --> 01:51:22,542 AND BE EMPOWERED AND BRING THAT 2822 01:51:22,609 --> 01:51:26,413 TO CLINICIANS OR THEIR FRIENDS 2823 01:51:26,479 --> 01:51:32,352 AND FAMILY TO EXPLAIN BUT IT 2824 01:51:32,419 --> 01:51:35,789 INTIMIDATING TO CONFRONT A 2825 01:51:35,855 --> 01:51:37,257 MEDICAL PROVIDER, GIVING TOOLS 2826 01:51:37,323 --> 01:51:39,225 AND TIPS, UPLOADING TO PATIENT 2827 01:51:39,292 --> 01:51:41,661 PORTAL THE STANDARD OF CARE FOR 2828 01:51:41,728 --> 01:51:43,730 LYMPHEDEMA AND SOMETHING FOR 2829 01:51:43,797 --> 01:51:44,964 THEIR CLINICIANS PERUSE AT THEIR 2830 01:51:45,031 --> 01:51:47,367 LEISURE BUT STUFF LIKE THAT 2831 01:51:47,434 --> 01:51:48,468 COULD BE HELPFUL. 2832 01:51:48,535 --> 01:51:50,403 >> I WANT TO MAKE A COMMENT THAT 2833 01:51:50,470 --> 01:51:53,039 IN MY CAREER AS A CLINICIAN, 2834 01:51:53,106 --> 01:51:56,543 I'VE WATCHED IN GENERAL THIS 2835 01:51:56,609 --> 01:51:58,311 EVOLUTION OF DOCTOR KNOWS ALL 2836 01:51:58,378 --> 01:52:00,413 AND YOU SIT DOWN THERE AND YOU 2837 01:52:00,480 --> 01:52:03,216 LISTEN, TO ONE IN IT WHICH THERE 2838 01:52:03,283 --> 01:52:04,918 IS DIALOGUE, READY FLOW OF 2839 01:52:04,984 --> 01:52:05,718 INFORMATION ON THE INTERNET, 2840 01:52:05,785 --> 01:52:07,954 OFTEN IT HAS TO BE EVALUATED. 2841 01:52:08,021 --> 01:52:09,389 THE GOOD CLINICIANS WILL ENTER 2842 01:52:09,456 --> 01:52:10,356 INTO DIALOGUE WITH THEIR 2843 01:52:10,423 --> 01:52:11,424 PATIENTS AND SAY I DON'T KNOW 2844 01:52:11,491 --> 01:52:14,928 BUT I'M GOING TO FIND OUT, I'M 2845 01:52:14,994 --> 01:52:16,396 GOING TO READ THAT PAPER, 2846 01:52:16,463 --> 01:52:18,731 WHATEVER IT MIGHT BE. 2847 01:52:18,798 --> 01:52:21,067 WHEN WE'RE TALKING ABOUT 2848 01:52:21,134 --> 01:52:23,603 DIRECTLY AFFECTED LYMPHATIC 2849 01:52:23,670 --> 01:52:25,572 DISEASE COMMUNITY IT'S A 2850 01:52:25,638 --> 01:52:26,439 SUBGROUP FAIRLY HABITUALLY 2851 01:52:26,506 --> 01:52:27,674 MARGINALIZED AND MAY NOT HAVE 2852 01:52:27,740 --> 01:52:29,809 THE SKILL SET OF FINDING OUT WHO 2853 01:52:29,876 --> 01:52:31,578 WILL TALK TO THEM AND WHO WON'T. 2854 01:52:31,644 --> 01:52:33,012 I DO ENCOURAGE MY PATIENTS TO 2855 01:52:33,079 --> 01:52:34,881 RUN AWAY FROM THE DOCTORS THAT 2856 01:52:34,948 --> 01:52:37,083 WON'T TALK TO THEM. 2857 01:52:37,150 --> 01:52:39,452 IT'S FAR TOO LATE TO NOT BE 2858 01:52:39,519 --> 01:52:43,590 DOING THAT AND THAT COULD BE THE 2859 01:52:43,656 --> 01:52:44,290 SIMPLEST ELEMENT IN THE 2860 01:52:44,357 --> 01:52:45,692 EDUCATION PROCESS FOR THE 2861 01:52:45,758 --> 01:52:46,826 PATIENT COMMUNITY, LEARN HOW TO 2862 01:52:46,893 --> 01:52:49,562 TALK TO YOUR DOCTOR. 2863 01:52:49,629 --> 01:52:50,697 DON'T FEED THEM NECESSARY 2864 01:52:50,763 --> 01:52:55,768 INFORMATION, WE'RE TOO EARLY 2865 01:52:55,835 --> 01:52:58,371 FOR THAT BUT FEED THEM THE SKILL 2866 01:52:58,438 --> 01:53:01,241 SET TO GET TO THE CLINICIANS 2867 01:53:01,307 --> 01:53:05,078 WHAT THEY NEED. 2868 01:53:05,145 --> 01:53:06,279 >> WE WANT TO ROOT OUR PATIENT 2869 01:53:06,346 --> 01:53:09,149 TOOLS IN THE NOW, ACTIVE WAYS 2870 01:53:09,215 --> 01:53:11,284 PATIENTS AFFECTED BY THESE 2871 01:53:11,351 --> 01:53:13,753 DISEASES ARE MARGINALIZED OR 2872 01:53:13,820 --> 01:53:15,788 TREATED, TO ACKNOWLEDGE THERE'S 2873 01:53:15,855 --> 01:53:17,290 TREMENDOUS POWER IN PATIENT 2874 01:53:17,357 --> 01:53:18,158 ADVOCACY FOR THINGS COMING DOWN 2875 01:53:18,224 --> 01:53:18,758 THE PIPELINE. 2876 01:53:18,825 --> 01:53:21,261 DO YOU THINK IT'S POSSIBLE AS WE 2877 01:53:21,327 --> 01:53:22,128 DEVELOP TOOLS TO 2878 01:53:22,195 --> 01:53:22,729 COMPARTMENTALIZE THINGS READY 2879 01:53:22,795 --> 01:53:26,099 FOR PRIME TIME AND YOU SHUN 2880 01:53:26,166 --> 01:53:27,734 ADVOCATING FOR AND ALSO HERE ARE 2881 01:53:27,800 --> 01:53:29,269 THINGS GOING ON IN THE RESEARCH 2882 01:53:29,335 --> 01:53:31,437 COMMUNITY, NOT NECESSARILY THE 2883 01:53:31,504 --> 01:53:33,940 NITTY-GRITTY OF ALL THE UNIVERSE 2884 01:53:34,007 --> 01:53:36,576 BUT JUST SO YOU KNOW PEOPLE ARE 2885 01:53:36,643 --> 01:53:38,244 LOOKING FOR THIS, NOT TO TAKE TO 2886 01:53:38,311 --> 01:53:43,216 CLINICIAN NOW BUT EMPOWER THE 2887 01:53:43,283 --> 01:53:43,850 PATIENT POPULATION, THERE'S A 2888 01:53:43,917 --> 01:53:46,419 LOT OF STUFF GOING ON, NOT A 2889 01:53:46,486 --> 01:53:49,956 RIGHT-NOW THING BUT WE NEED TO 2890 01:53:50,023 --> 01:53:50,924 EMPOWER RESEARCHERS BECAUSE IT 2891 01:53:50,990 --> 01:53:53,126 COULD BE A TOMORROW THING AND 2892 01:53:53,193 --> 01:53:54,861 SEGREGATE, IS THERE A WAY TO DO 2893 01:53:54,928 --> 01:53:55,895 THAT? 2894 01:53:55,962 --> 01:53:57,163 >> I THINK THE PATIENT GETS 2895 01:53:57,230 --> 01:53:58,264 EXCITED TO KNOW PEOPLE ARE 2896 01:53:58,331 --> 01:54:00,133 PAYING ATTENTION IN THE IVORY 2897 01:54:00,200 --> 01:54:02,302 TOWERS OF RESEARCH AND 2898 01:54:02,368 --> 01:54:03,736 EVERYTHING. 2899 01:54:03,803 --> 01:54:07,273 THEY ARE SO ACCUSTOMED TO FEEL 2900 01:54:07,340 --> 01:54:07,974 SHUFFLED. 2901 01:54:08,041 --> 01:54:08,975 I WASN'T DIAGNOSED UNTIL 14 AND 2902 01:54:09,042 --> 01:54:11,177 I WAS BORN IF IT. 2903 01:54:11,244 --> 01:54:12,178 FROM BALTIMORE, MY PARENTS TOOK 2904 01:54:12,245 --> 01:54:13,246 ME TO HOPKINS AND THEY DIDN'T 2905 01:54:13,313 --> 01:54:14,314 KNOW WHAT IT WAS. 2906 01:54:14,380 --> 01:54:17,016 WE ALL HAVE THE SAME STORY, ONE 2907 01:54:17,083 --> 01:54:20,253 WAY OR ANOTHER. 2908 01:54:20,320 --> 01:54:22,589 PATIENTS ARE THE HYPE GIRLS AND 2909 01:54:22,655 --> 01:54:24,657 GUYS FOR RESEARCH COMING OUT FOR 2910 01:54:24,724 --> 01:54:24,924 SURE. 2911 01:54:24,991 --> 01:54:26,492 >> I THINK ONCE PATIENTS KNOW 2912 01:54:26,559 --> 01:54:29,128 ABOUT THE TOOLS AND HAVE THE 2913 01:54:29,195 --> 01:54:30,797 TOOLS, THEY WILL GO TO SEEK OUT 2914 01:54:30,863 --> 01:54:33,833 THE INFORMATION AND SEE WHAT'S 2915 01:54:33,900 --> 01:54:37,437 ON THE HORIZON AND WHAT'S 2916 01:54:37,503 --> 01:54:38,104 AVAILABLE. 2917 01:54:38,171 --> 01:54:38,972 FROM MY EXPERIENCE IT WOULD BE 2918 01:54:39,038 --> 01:54:42,242 BEEN GREAT TO BE PART OF A 2919 01:54:42,308 --> 01:54:43,576 REGISTRY WHERE IF THERE'S SOME 2920 01:54:43,643 --> 01:54:45,411 TYPE OF STUDY BEING DONE I'M 2921 01:54:45,478 --> 01:54:47,280 ASKED TO PARTICIPATE. 2922 01:54:47,347 --> 01:54:49,015 I WANT TO HELP ADVANCE THE 2923 01:54:49,082 --> 01:54:52,218 SCIENCE, TO HELP MY OWN DISEASE. 2924 01:54:52,285 --> 01:54:55,388 SO WHY AM I NOT AWARE OF THIS? 2925 01:54:55,455 --> 01:55:01,661 WHY AM I NOT AWARE OF HAVING 2926 01:55:01,728 --> 01:55:04,030 LYMPHEDEMA OVER 20 YEARS THERE'S 2927 01:55:04,097 --> 01:55:05,231 SURGERIES, MEDICATIONS 2928 01:55:05,298 --> 01:55:07,200 AVAILABLE, NOT JUST MANUAL LYMPH 2929 01:55:07,267 --> 01:55:09,836 DRAINAGE AND WRAPPING AND 2930 01:55:09,902 --> 01:55:10,203 BANDAGING. 2931 01:55:10,270 --> 01:55:13,006 AND I HAD TO SEEK THAT OUT ON MY 2932 01:55:13,072 --> 01:55:14,974 OWN, THANKFULLY I'LL READ A 2933 01:55:15,041 --> 01:55:16,542 RESEARCH PAPER, IF IT'S ABOUT 2934 01:55:16,609 --> 01:55:17,644 THE RESEARCH, LIKE I'LL GO 2935 01:55:17,710 --> 01:55:19,145 THROUGH AND READ IT. 2936 01:55:19,212 --> 01:55:20,213 BUT WHO DOES THAT? 2937 01:55:20,280 --> 01:55:25,818 WHO IS GOING TO ACTUALLY GO 2938 01:55:25,885 --> 01:55:26,919 THROUGH THAT? 2939 01:55:26,986 --> 01:55:28,221 WHAT AVERAGE PERSON IS GOING TO 2940 01:55:28,288 --> 01:55:29,188 DO THAT? 2941 01:55:29,255 --> 01:55:30,089 NOT MANY. 2942 01:55:30,156 --> 01:55:31,524 HAVING A WAY PROVIDERS HAVE AT 2943 01:55:31,591 --> 01:55:32,992 LEAST SOME INFORMATION. 2944 01:55:33,059 --> 01:55:36,763 OKAY, I DON'T DON'T KNOW MUCH 2945 01:55:36,829 --> 01:55:37,964 ABOUT THIS DISEASE BUT YOU CAN 2946 01:55:38,031 --> 01:55:42,335 GO HERE TO FIND OUT MORE 2947 01:55:42,402 --> 01:55:42,669 INFORMATION. 2948 01:55:42,735 --> 01:55:43,870 >> I'M SORRY TO CUT PEOPLE OFF 2949 01:55:43,936 --> 01:55:46,839 BUT WE NEED TO STAY ON SCHEDULE. 2950 01:55:46,906 --> 01:55:49,809 I'M GOING TO TAKE US TO BREAK. 2951 01:55:49,876 --> 01:55:51,411 THANK YOU, PATIENT TOOLS 2952 01:55:51,477 --> 01:55:53,746 COMMITTEE, FOR YOUR INSPIRING 2953 01:55:53,813 --> 01:55:55,581 WORDS AND STARTING A STIMULATING 2954 01:55:55,648 --> 01:55:56,783 CONVERSATION THAT'S VERY HARD TO 2955 01:55:56,849 --> 01:55:57,317 STOP. 2956 01:55:57,383 --> 01:56:04,624 WE'LL SEE EVERYONE BACK IN 13 2957 01:56:04,691 --> 01:56:03,022 MINUTES 2958 01:56:03,022 --> 01:56:05,591 >> I'M A PRIME LYMPHEDEMA 2959 01:56:05,658 --> 01:56:08,594 PATIENT. 2960 01:56:08,661 --> 01:56:10,363 THE PATIENT COMMUNITY IS VERY 2961 01:56:10,430 --> 01:56:11,831 ACTIVE BUT THERE IS A LOT OF 2962 01:56:11,898 --> 01:56:13,800 PATIENTS WHO DON'T KNOW THE 2963 01:56:13,866 --> 01:56:16,269 COMMUNITY IS EVEN THERE. 2964 01:56:16,336 --> 01:56:20,807 SO I'M GOING TO SPEAK -- I SPEAK 2965 01:56:20,873 --> 01:56:22,642 FROM THAT PATIENT ASPECT, 2966 01:56:22,709 --> 01:56:24,711 JEFFREY IS MORE THE RESEARCH 2967 01:56:24,777 --> 01:56:24,944 ASPECT. 2968 01:56:25,011 --> 01:56:32,518 WE TALK IN PREVIOUS MEETINGS HOW 2969 01:56:32,585 --> 01:56:34,954 LYMPHATIC DISEASE POPULATION IS 2970 01:56:35,021 --> 01:56:41,928 FRAGMENTED, AND EVEN FURTHER 2971 01:56:41,994 --> 01:56:43,563 ABOUT ALIGNMENT. 2972 01:56:43,629 --> 01:56:46,866 THE VISION STATEMENT TO EXPAND 2973 01:56:46,933 --> 01:56:48,701 AND CONNECT COMMUNITIES MATCHING 2974 01:56:48,768 --> 01:56:50,503 SIZE AND VOICE TO BURDEN SO 2975 01:56:50,570 --> 01:56:57,343 INTEGRATED COMMUNITY CAN BE MORE 2976 01:56:57,410 --> 01:56:57,744 EFFECTIVE. 2977 01:56:57,810 --> 01:57:02,715 MEANS MAY BE MORE SEPARATE. 2978 01:57:02,782 --> 01:57:06,753 THE WHY, SO THIS GROUP EXISTS TO 2979 01:57:06,819 --> 01:57:08,187 EXPAND AND CONNECT COMMUNITIES, 2980 01:57:08,254 --> 01:57:08,921 CRITICALLY IMPORTANT BECAUSE 2981 01:57:08,988 --> 01:57:11,357 WHEN THE SIZE AND VOICE OF OUR 2982 01:57:11,424 --> 01:57:12,125 INTEGRATED COMMUNITY MATCHES THE 2983 01:57:12,191 --> 01:57:14,527 BURDEN WE CAN BE MORE EFFECTIVE 2984 01:57:14,594 --> 01:57:16,396 IN DRIVING CHANGE ACROSS ACCESS 2985 01:57:16,462 --> 01:57:18,664 TO CARE, FUNDING FOR RESEARCH, 2986 01:57:18,731 --> 01:57:20,867 CROSS-POLLINATION OF IDEAS AND 2987 01:57:20,933 --> 01:57:22,735 BETTER PATIENT SUPPORT. 2988 01:57:22,802 --> 01:57:26,272 THE WORK CONNECTS TO THE NCLD 2989 01:57:26,339 --> 01:57:28,741 VISION AND CHARGE WHEN GROUPS 2990 01:57:28,808 --> 01:57:30,810 ARE FOCUSED ON THE SAME GOALS 2991 01:57:30,877 --> 01:57:32,011 WILL BETTER ADDRESS CRITICAL 2992 01:57:32,078 --> 01:57:41,521 CHALLENGES IN THE SCIENTIFIC 2993 01:57:41,587 --> 01:57:42,755 REEL THE. 2994 01:57:42,822 --> 01:57:44,690 ASPIRATION TO PROVIDE A CLEAR 2995 01:57:44,757 --> 01:57:46,726 ROADMAP BETWEEN THE PRESENT 2996 01:57:46,793 --> 01:57:49,228 STATE AND WHERE THE CRITICAL 2997 01:57:49,295 --> 01:57:53,466 CHALLENGES IN ACCESS TO CARE, 2998 01:57:53,533 --> 01:57:54,801 PRACTICE, ADVANCEMENT, PUBLIC 2999 01:57:54,867 --> 01:57:56,302 EDUCATION AND ADVOCACY ARE 3000 01:57:56,369 --> 01:57:57,069 OVERCOME. 3001 01:57:57,136 --> 01:58:00,907 WE'LL MEASURE OUR SUCCESS BY 3002 01:58:00,973 --> 01:58:06,245 TRACKING THE USAGE OF TERM 3003 01:58:06,312 --> 01:58:08,781 LYMPHATICS ACROSS DOMAINS. 3004 01:58:08,848 --> 01:58:10,249 NEXT SLIDE PLEASE. 3005 01:58:10,316 --> 01:58:12,385 THE HOW, THE LEARNING PLAN, TO 3006 01:58:12,452 --> 01:58:13,719 ENSURE CONSIDERATION WE MUST 3007 01:58:13,786 --> 01:58:15,054 BETTER UNDERSTAND NAMES AND 3008 01:58:15,121 --> 01:58:17,457 LEADERS OF GROUPS TO UNIFY, 3009 01:58:17,523 --> 01:58:21,794 VISIBLE AND OVER THE HORIZON 3010 01:58:21,861 --> 01:58:26,933 GROUPS TO CONNECT OR BE 3011 01:58:26,999 --> 01:58:28,201 MOTIVATED, TO IDENTIFY 3012 01:58:28,267 --> 01:58:29,669 CHALLENGES AND BARRIERS, AND 3013 01:58:29,735 --> 01:58:33,739 INCORPORATE THE WORK ALREADY 3014 01:58:33,806 --> 01:58:38,478 ACHIEVED WE WILL LEVERAGE NIH 3015 01:58:38,544 --> 01:58:45,418 AND NCLD CONNECTIONs AND TAKE 3016 01:58:45,485 --> 01:58:45,685 ADVANTAGE. 3017 01:58:45,751 --> 01:58:48,387 THERE'S A LOT OF BARRIERS. 3018 01:58:48,454 --> 01:58:49,622 THE FOLLOWING ITEMS COULD 3019 01:58:49,689 --> 01:58:51,491 PROHIBIT OUR SUCCESS. 3020 01:58:51,557 --> 01:58:53,459 WHY THESE GROUPS ARE NOT 3021 01:58:53,526 --> 01:59:00,399 CONNECTED, WHAT COULD CAUSE THEM 3022 01:59:00,466 --> 01:59:01,467 TO BE CONNECTED, ECOSYSTEM, 3023 01:59:01,534 --> 01:59:04,070 KNOWN ISSUES ARE LACK OF 3024 01:59:04,136 --> 01:59:06,172 INCENTIVES TO GET INVOLVED, LACK 3025 01:59:06,239 --> 01:59:08,040 OF KNOWLEDGE OVERALL ON 3026 01:59:08,107 --> 01:59:08,808 LYMPHATICS, PATIENT AND 3027 01:59:08,875 --> 01:59:11,844 CAREGIVER GROUPS THAT MAY NOT 3028 01:59:11,911 --> 01:59:17,650 COMMUNICATE WITH ONE ANOTHER SO 3029 01:59:17,717 --> 01:59:19,218 FRAGMENTATION EXISTS AND 3030 01:59:19,285 --> 01:59:20,786 COMPETITION FOR RESEARCH 3031 01:59:20,853 --> 01:59:21,420 ATTENTION AND FUNDRAISING. 3032 01:59:21,487 --> 01:59:23,689 NEXT SLIDE PLEASE. 3033 01:59:23,756 --> 01:59:26,626 THE HOW, INCLUSIVE ACTION, WE 3034 01:59:26,692 --> 01:59:29,061 NEED TO CONSIDER PERSPECTIVES OF 3035 01:59:29,128 --> 01:59:30,363 LEADERS OF ORGANIZATIONS, 3036 01:59:30,429 --> 01:59:31,564 MOTIVATIONS FOR SENIOR 3037 01:59:31,631 --> 01:59:34,400 RESEARCHERS TO GET INVOLVED, 3038 01:59:34,467 --> 01:59:35,635 YOUNGER POSTDOCS TO GET INVOLVED 3039 01:59:35,701 --> 01:59:38,037 IN CAREERS AND PEOPLE WHO NEED 3040 01:59:38,104 --> 01:59:41,007 TO BE CONSOLIDATED VERSUS 3041 01:59:41,073 --> 01:59:43,943 RECRUITED CONSIDERING SDOH, 3042 01:59:44,010 --> 01:59:45,478 MAJOR DONORS, AND REQUIRED 3043 01:59:45,545 --> 01:59:48,347 SUPPORT OR INPUT FROM DIFFERENT 3044 01:59:48,414 --> 01:59:49,649 ORGANIZATIONS AND TEAMS SUCH AS 3045 01:59:49,715 --> 01:59:55,888 NIH AND NHLBI AND PATIENT AND 3046 01:59:55,955 --> 02:00:06,499 ADVOCACY GROUPS, LEARN, LAM, ET 3047 02:00:06,766 --> 02:00:07,833 CETERA. 3048 02:00:07,900 --> 02:00:09,368 >> SKIPPING TO THE NEXT, WE'LL 3049 02:00:09,435 --> 02:00:13,973 GET YOU IN AFTER THIS COMMITTEE. 3050 02:00:14,040 --> 02:00:14,473 SOUND GOOD? 3051 02:00:14,540 --> 02:00:18,010 >> OKAY. 3052 02:00:18,077 --> 02:00:20,313 >> NEXT SLIDE PLEASE. 3053 02:00:20,379 --> 02:00:21,213 OH, WAIT. 3054 02:00:21,280 --> 02:00:27,153 CAN YOU GO BACK ONE ACTUALLY? 3055 02:00:27,219 --> 02:00:28,421 I'M SORRY. 3056 02:00:28,487 --> 02:00:30,022 I'LL GO OFF THE SCREEN. 3057 02:00:30,089 --> 02:00:35,261 WE DID GO THROUGH THIS. 3058 02:00:35,328 --> 02:00:37,163 NEXT SLIDE, I APOLOGIZE. 3059 02:00:37,229 --> 02:00:38,297 THE FOLLOWING PEOPLE, TEAMS, 3060 02:00:38,364 --> 02:00:40,099 ORGANIZATIONS WILL NEED TO BUY 3061 02:00:40,166 --> 02:00:42,301 IN INCLUDING PATIENT ADVOCACY 3062 02:00:42,368 --> 02:00:43,736 GROUPS AND FOUNDATIONS, SENIOR 3063 02:00:43,803 --> 02:00:44,337 SCIENTISTS, PATIENTS. 3064 02:00:44,403 --> 02:00:46,138 WE NEED TO UNDERSTAND WHAT'S 3065 02:00:46,205 --> 02:00:47,673 REQUIRED TO ENABLE COLLABORATIVE 3066 02:00:47,740 --> 02:00:49,075 AND TEAM SCIENCE RESEARCH 3067 02:00:49,141 --> 02:00:52,912 EFFORTS THAT INTEGRATE BASIC AND 3068 02:00:52,979 --> 02:00:55,214 CLINICAL SCIENTISTS AND 3069 02:00:55,281 --> 02:00:56,616 DIVERSIFICATION OF BIOMEDICAL 3070 02:00:56,682 --> 02:00:58,150 RESEARCH WORKFORCE TO INCLUDE 3071 02:00:58,217 --> 02:01:00,553 BIOENGINEERS AS WELL. 3072 02:01:00,620 --> 02:01:02,421 NEXT SLIDE PLEASE. 3073 02:01:02,488 --> 02:01:05,157 SO, HOW ARE WE DOING THIS? 3074 02:01:05,224 --> 02:01:06,459 TO BOLSTER KNOWLEDGE THE 3075 02:01:06,525 --> 02:01:08,861 FOLLOWING IMMEDIATE STEPS ARE 3076 02:01:08,928 --> 02:01:09,128 CRITICAL. 3077 02:01:09,195 --> 02:01:10,663 WE WILL COLLABORATE WITH 3078 02:01:10,730 --> 02:01:12,498 COMMITTEES TO MAP STAKEHOLDERS 3079 02:01:12,565 --> 02:01:14,700 AND IDENTIFY NETWORKS, 3080 02:01:14,767 --> 02:01:16,836 COLLABORATE WITH NHLBI, OSPEEC 3081 02:01:16,902 --> 02:01:18,571 TO ISSUE RFI TO DETERMINE 3082 02:01:18,638 --> 02:01:21,273 EXPANDED LIST OF STAKEHOLDERS 3083 02:01:21,340 --> 02:01:24,677 AND MOTIVATIONS, REQUEST FOCUS 3084 02:01:24,744 --> 02:01:28,948 GROUPS BASED OFF RFI RESULTS. 3085 02:01:29,015 --> 02:01:30,883 NEXT SLIDE PLEASE. 3086 02:01:30,950 --> 02:01:36,722 AND IN YEAR 2 DEVELOP PROGRAMS, 3087 02:01:36,789 --> 02:01:38,791 TECHNIQUES AND METHODS AND ALIGN 3088 02:01:38,858 --> 02:01:40,960 WHAT CONNECTIVE TACTICS WILL 3089 02:01:41,027 --> 02:01:45,931 LOOK LIKE. 3090 02:01:45,998 --> 02:01:47,767 LONG TERM WOULD LIKE TO SEE 3091 02:01:47,833 --> 02:01:48,567 PERMANENT ENTITY. 3092 02:01:48,634 --> 02:01:50,636 I BELIEVE THAT'S ALL SHE WROTE. 3093 02:01:50,703 --> 02:01:52,238 WE'LL OPEN THE FLOOR FOR 3094 02:01:52,304 --> 02:01:53,506 DISCUSSION. 3095 02:01:53,572 --> 02:01:55,241 I WANT TO GIVE JEFFREY THE 3096 02:01:55,307 --> 02:01:59,078 CHANCE TO ADD ANYTHING. 3097 02:01:59,145 --> 02:02:01,781 >> YEAH, THAT WAS GREAT. 3098 02:02:01,847 --> 02:02:03,949 TO FRAME THE DISCUSSION, I THINK 3099 02:02:04,016 --> 02:02:13,926 MUCH LIKE WHAT STEPH AHEAD OF 3100 02:02:13,993 --> 02:02:15,294 CYNTHIA'S PRESENTATION, THIS 3101 02:02:15,361 --> 02:02:16,462 GROUP NEEDS EDUCATION BECAUSE IT 3102 02:02:16,529 --> 02:02:19,165 IS BY NATURE A NETWORK-BASED 3103 02:02:19,231 --> 02:02:19,365 THING. 3104 02:02:19,432 --> 02:02:22,234 WHAT WE'RE TRYING TO DO. 3105 02:02:22,301 --> 02:02:24,003 OUR COMMITTEE IS A SMALL 3106 02:02:24,070 --> 02:02:25,538 COMMITTEE, ONLY A SMALL 3107 02:02:25,604 --> 02:02:27,873 REPRESENTATION OF THIS WIDER 3108 02:02:27,940 --> 02:02:29,375 COMMITTEE, ONLY A MICROSCOPIC 3109 02:02:29,442 --> 02:02:31,477 REPRESENTATION OF THE GROUPS WE 3110 02:02:31,544 --> 02:02:33,546 NEED TO CONNECT US. 3111 02:02:33,612 --> 02:02:36,682 THROUGH THE RFI PROCESS OR IN A 3112 02:02:36,749 --> 02:02:37,817 PARALLEL INTERNAL PROCESS, IT 3113 02:02:37,883 --> 02:02:40,519 WOULD BE HELPFUL TO THINK ABOUT 3114 02:02:40,586 --> 02:02:45,891 FROM YOUR PERSPECTIVES BECAUSE 3115 02:02:45,958 --> 02:02:48,661 YOU'RE IN THESE SPACES, HOW 3116 02:02:48,728 --> 02:02:50,162 NEEDS TO BE CONNECTED, WHO 3117 02:02:50,229 --> 02:02:52,832 ALREADY I WAS, WHO NEEDS TO BE 3118 02:02:52,898 --> 02:02:55,101 CONSOLIDATED, AND WHO NEEDS TO 3119 02:02:55,167 --> 02:02:56,535 BE EVANGELIZED, THOSE ARE PEOPLE 3120 02:02:56,602 --> 02:03:02,208 NOT IN THIS SPACE WHO NEED -- 3121 02:03:02,274 --> 02:03:02,842 NEED? 3122 02:03:02,908 --> 02:03:04,009 WHO IT WOULD BE HELPFUL TO BRING 3123 02:03:04,076 --> 02:03:05,077 INTO THE SPACE. 3124 02:03:05,144 --> 02:03:06,479 WHAT BARRIERS KEEP THEM OUT, HOW 3125 02:03:06,545 --> 02:03:09,548 DO WE DO THAT? 3126 02:03:09,615 --> 02:03:11,317 THIS IS WHERE OUR COMMITTEE 3127 02:03:11,383 --> 02:03:12,818 REALLY NEEDS TO COLLABORATE WITH 3128 02:03:12,885 --> 02:03:15,621 ALL OF YOU ALL BECAUSE WE REALLY 3129 02:03:15,688 --> 02:03:17,456 DON'T HAVE THE CAPACITY, EVEN 3130 02:03:17,523 --> 02:03:23,129 THE NETWORK OF CONNECTIONS TO DO 3131 02:03:23,195 --> 02:03:23,696 THAT. 3132 02:03:23,763 --> 02:03:25,965 >> LET'S FOCUS ON THE QUESTIONS 3133 02:03:26,031 --> 02:03:27,066 FOR THIS DISCUSSION, THIS 3134 02:03:27,133 --> 02:03:29,468 COMMITTEE WOULD SEE VALUE 3135 02:03:29,535 --> 02:03:31,203 HEARING FROM YOU ALL ABOUT 3136 02:03:31,270 --> 02:03:32,671 JEFF'S QUESTIONS. 3137 02:03:32,738 --> 02:03:34,540 AS A RECAP WHO ALREADY 3138 02:03:34,607 --> 02:03:35,708 IDENTIFIES IN THIS SPACE THAT 3139 02:03:35,775 --> 02:03:37,843 NEEDS TO BE CONNECTED, WHO DO WE 3140 02:03:37,910 --> 02:03:39,578 NEED TO RECRUIT AND WHAT 3141 02:03:39,645 --> 02:03:41,747 BARRIERS ARE KEEPING THEM FROM 3142 02:03:41,814 --> 02:03:42,214 CONNECTING? 3143 02:03:42,281 --> 02:03:43,349 WE'D LOVE TO HEAR SOME COMMENTS 3144 02:03:43,415 --> 02:03:44,150 ON THAT. 3145 02:03:44,216 --> 02:03:46,185 >> I THINK THIS IS A TALL ASK, 3146 02:03:46,252 --> 02:03:52,258 HEARKENS BACK TO SOME OF THE 3147 02:03:52,324 --> 02:03:54,560 DISCUSSION WE'VE ALREADY HAD BUT 3148 02:03:54,627 --> 02:03:57,963 WE CAN PERHAPS ACKNOWLEDGE THERE 3149 02:03:58,030 --> 02:04:00,566 ARE FOCI OF CLINICAL LEARNING 3150 02:04:00,633 --> 02:04:02,201 AND DISSEMINATION THAT SHOULD 3151 02:04:02,268 --> 02:04:03,435 CONSIDER THEMSELVES PART OF THIS 3152 02:04:03,502 --> 02:04:04,503 COMMUNITY THAT DON'T HAVE ANY 3153 02:04:04,570 --> 02:04:09,675 IDEA THEY ARE THERE, AND THAT 3154 02:04:09,742 --> 02:04:13,145 WOULD INCLUDE AMERICAN BOARD OF 3155 02:04:13,212 --> 02:04:13,646 INTERNAL MEDICINE, HEART 3156 02:04:13,712 --> 02:04:14,980 ASSOCIATION, AMERICAN ACADEMY OF 3157 02:04:15,047 --> 02:04:16,348 PEDIATRICS, CANCER IS PROBABLY 3158 02:04:16,415 --> 02:04:18,951 CLOSER IN THAN SOME OTHERS. 3159 02:04:19,018 --> 02:04:20,753 SOMEHOW, I THINK WE NEED TO 3160 02:04:20,820 --> 02:04:23,455 FORGE A PATH TO THESE ENTITIES 3161 02:04:23,522 --> 02:04:26,659 SO THAT WE CAN SPEAK 3162 02:04:26,725 --> 02:04:28,294 COLLABORATIVELY ABOUT 3163 02:04:28,360 --> 02:04:29,695 ACKNOWLEDGING NOT ONLY THAT 3164 02:04:29,762 --> 02:04:31,664 THEIR SPECIALLY MIGHT BE AN 3165 02:04:31,730 --> 02:04:33,833 AVENUE FOR THE PATIENT TO 3166 02:04:33,899 --> 02:04:37,770 SELF-IDENTIFY AS IN THE NARROW 3167 02:04:37,837 --> 02:04:38,504 DEFINITION OF LYMPHATIC DISEASE 3168 02:04:38,571 --> 02:04:41,173 BUT ALSO IN THE BROADER 3169 02:04:41,240 --> 02:04:44,577 DEFINITION WE'VE BEEN TALKING 3170 02:04:44,643 --> 02:04:45,878 ABOUT SPECIALTIES REPRESENT 3171 02:04:45,945 --> 02:04:50,382 FUTURE AVENUES FOR APPLYING 3172 02:04:50,449 --> 02:04:52,017 LYMPHATIC BIOLOGY IN MEDICINE. 3173 02:04:52,084 --> 02:04:55,621 SO, I VOTE FOR THE INTAKE 3174 02:04:55,688 --> 02:04:56,622 PROCESS INCLUDING 3175 02:04:56,689 --> 02:04:58,457 REPRESENTATIVES FROM THESE LARGE 3176 02:04:58,524 --> 02:04:59,892 CLINICAL ORGANIZATIONS TO TALK 3177 02:04:59,959 --> 02:05:04,597 ABOUT HOW WE CAN CREATE A 3178 02:05:04,663 --> 02:05:10,269 RELATIONSHIP AND MINE THEM FOR 3179 02:05:10,336 --> 02:05:11,337 INFORMATION AND IN TURN 3180 02:05:11,403 --> 02:05:15,174 DISSEMINATION INFORMATION AS WE 3181 02:05:15,241 --> 02:05:15,374 HAVE. 3182 02:05:15,441 --> 02:05:17,343 >> I LIKE THAT IDEA. 3183 02:05:17,409 --> 02:05:18,611 WONDERING IF IT'S UNREALISTIC TO 3184 02:05:18,677 --> 02:05:20,346 THINK ABOUT HAVING A SPECIAL 3185 02:05:20,412 --> 02:05:22,781 MEETING WHERE WE BRING THESE 3186 02:05:22,848 --> 02:05:30,756 ENTITIES IN ONE SPACE, MAYBE IF 3187 02:05:30,823 --> 02:05:33,459 THERE'S AN INDIVIDUAL FROM THESE 3188 02:05:33,525 --> 02:05:35,027 AREAS WE COULD INVITE AND SEE 3189 02:05:35,094 --> 02:05:36,128 WHAT ENDS UP HAPPENING. 3190 02:05:36,195 --> 02:05:38,497 WHAT I FIND INTERESTING IN THESE 3191 02:05:38,564 --> 02:05:40,466 SPACES, ONE, THIS IS NEW, 3192 02:05:40,532 --> 02:05:41,700 EXCITING OPPORTUNITY THAT HAS 3193 02:05:41,767 --> 02:05:43,802 HAD YEARS AND YEARS OF GETTING 3194 02:05:43,869 --> 02:05:44,870 HERE, I RECOGNIZE THAT. 3195 02:05:44,937 --> 02:05:48,140 BUT MAYBE FOR THAT REASON THAT 3196 02:05:48,207 --> 02:05:49,708 MIGHT BE SOMETHING WHERE 3197 02:05:49,775 --> 02:05:55,047 SOMEBODY WOULD BE INTERESTED IN 3198 02:05:55,114 --> 02:05:58,117 COMING AND BE A POSITIVE ELEMENT 3199 02:05:58,183 --> 02:05:59,985 AND WHEN THEY SEE OTHER GROUPS 3200 02:06:00,052 --> 02:06:02,655 IT MIGHT BE A MOTIVATING FACTOR 3201 02:06:02,721 --> 02:06:03,289 TOO. 3202 02:06:03,355 --> 02:06:05,090 >> YEAH, I AGREE. 3203 02:06:05,157 --> 02:06:12,331 I THINK WE LOOK ADVERTISEMENT, 3204 02:06:12,398 --> 02:06:13,666 PEOPLE DOESN'T KNOW ABOUT THIS 3205 02:06:13,732 --> 02:06:13,966 FEELING. 3206 02:06:14,033 --> 02:06:17,603 I SAID THIS FROM MY OWN 3207 02:06:17,670 --> 02:06:19,471 EXPERIENCE. 3208 02:06:19,538 --> 02:06:20,572 I'M A DEVELOPMENTAL BIOLOGIST, 3209 02:06:20,639 --> 02:06:22,007 VASCULAR BIOLOGIST. 3210 02:06:22,074 --> 02:06:31,283 I'M PART OF THOSE SOCIETIES. 3211 02:06:31,350 --> 02:06:32,451 BASICALLY HOW INVESTIGATORS 3212 02:06:32,518 --> 02:06:34,153 PRESENTING AT THIS ANNUAL 3213 02:06:34,219 --> 02:06:36,355 MEETINGS THAT TALK ABOUT 3214 02:06:36,422 --> 02:06:38,724 LYMPHATICS, IT TAKES A LONG 3215 02:06:38,791 --> 02:06:42,461 TIME, STILL THERE ARE ONE OR TWO 3216 02:06:42,528 --> 02:06:43,862 AMONG HUNDRED SPEAKERS THAT ARE 3217 02:06:43,929 --> 02:06:44,697 REPRESENTING THE FIELD. 3218 02:06:44,763 --> 02:06:47,766 I THINK WE SHOULD EACH OF US IN 3219 02:06:47,833 --> 02:06:50,502 OUR OWN COMMUNITIES PUSH TO HAVE 3220 02:06:50,569 --> 02:06:53,238 MORE PEOPLE IN OUR FIELD PRESENT 3221 02:06:53,305 --> 02:06:58,177 IN THOSE FORMS, WHERE PEOPLE CAN 3222 02:06:58,243 --> 02:07:01,480 LEARN ABOUT IT. 3223 02:07:01,547 --> 02:07:03,882 AGAIN, IN OTHER SOCIETIES IN 3224 02:07:03,949 --> 02:07:06,819 WHICH LYMPHATICS ARE NOT PART, I 3225 02:07:06,885 --> 02:07:08,387 DON'T KNOW, CANCER MEETINGS 3226 02:07:08,454 --> 02:07:11,123 PROBABLY LYMPHATICS ARE MOSTLY 3227 02:07:11,190 --> 02:07:12,958 REPRESENTED, RIGHT? 3228 02:07:13,025 --> 02:07:15,361 AND NEURAL MEETINGS, WHICH ARE 3229 02:07:15,427 --> 02:07:17,296 ALSO 40,000 PEOPLE, OR SOMETHING 3230 02:07:17,363 --> 02:07:18,797 LIKE THAT. 3231 02:07:18,864 --> 02:07:21,533 TRY TO CONVINCE YOUR COLLEAGUES 3232 02:07:21,600 --> 02:07:22,735 INVEST THE WORD LYMPHATICS IN 3233 02:07:22,801 --> 02:07:25,237 YOUR TALKS IS SOMETHING WE COULD 3234 02:07:25,304 --> 02:07:26,705 DO JUST TO TRANSMIT BECAUSE 3235 02:07:26,772 --> 02:07:28,007 AGAIN WE'RE A MINORITY. 3236 02:07:28,073 --> 02:07:34,013 IT HAS BEEN AN ISSUE FOR ME 3237 02:07:34,079 --> 02:07:37,449 GETTING BETTER BUT STILL WE'RE 3238 02:07:37,516 --> 02:07:39,785 VERY VIEW. 3239 02:07:39,852 --> 02:07:41,387 SOCIETY FOR DEVELOPMENTAL 3240 02:07:41,453 --> 02:07:43,389 BIOLOGY IS RARE, SDB. 3241 02:07:43,455 --> 02:07:47,026 IT HAS IMPROVED A LOT, NOW 3242 02:07:47,092 --> 02:07:49,328 ANOTHER SOCIETY OF CELL BIOLOGY, 3243 02:07:49,395 --> 02:07:51,296 I DON'T KNOW IF THERE ARE 3244 02:07:51,363 --> 02:07:52,231 LYMPHATIC TALKS, EVER. 3245 02:07:52,297 --> 02:07:54,233 SO IT'S VERY RARE. 3246 02:07:54,299 --> 02:07:56,435 SO WHEN THEY INVITE US, IT'S 3247 02:07:56,502 --> 02:07:58,637 JUST LIKE, OH, LOOK AT THIS. 3248 02:07:58,704 --> 02:08:00,906 OH, SOMETHING FOR AN EXHIBITION, 3249 02:08:00,973 --> 02:08:01,206 RIGHT? 3250 02:08:01,273 --> 02:08:03,042 SO BUT IT NEEDS TO BECOME MORE 3251 02:08:03,108 --> 02:08:13,385 OF A THING THAT WE ARE PART OF 3252 02:08:13,452 --> 02:08:13,752 THE PROGRAMS. 3253 02:08:13,819 --> 02:08:14,453 >> THANK YOU. 3254 02:08:14,520 --> 02:08:17,689 IT FEELS LIKE THERE'S A 3255 02:08:17,756 --> 02:08:19,124 COUPLE -- I THINK THERE'S 3256 02:08:19,191 --> 02:08:22,261 DIFFERENT GROUPS THAT YOU'RE 3257 02:08:22,327 --> 02:08:23,662 TRYING TO EVANGELIST IN. 3258 02:08:23,729 --> 02:08:26,231 AND I FEEL SO YOU GET THE 3259 02:08:26,298 --> 02:08:28,767 PATIENTS AND THOSE AFFECTED BY 3260 02:08:28,834 --> 02:08:30,769 LYMPHATIC DISEASES, AND THEN YOU 3261 02:08:30,836 --> 02:08:32,337 HAVE THE RESEARCHERS, I THINK 3262 02:08:32,404 --> 02:08:36,041 THE STRATEGIES TO EVANGELIZE ARE 3263 02:08:36,108 --> 02:08:39,545 GOING TO BE DIFFERENT IN TERMS 3264 02:08:39,611 --> 02:08:40,646 OF MOTIVATIONS. 3265 02:08:40,712 --> 02:08:42,114 SO, I JUST WANTED TO POINT THAT 3266 02:08:42,181 --> 02:08:45,784 OUT THAT I DON'T KNOW I KNOW 3267 02:08:45,851 --> 02:08:46,985 YOU'RE ALREADY A SMALL COMMITTEE 3268 02:08:47,052 --> 02:08:49,421 BUT WE HAVE TO FURTHER SUBDIVIDE 3269 02:08:49,488 --> 02:08:52,758 TO GET AT THESE DIFFERENT 3270 02:08:52,825 --> 02:08:55,894 STAKEHOLDERS. 3271 02:08:55,961 --> 02:08:57,396 THERE'S SYNERGY WITH THE 3272 02:08:57,463 --> 02:08:58,297 EDUCATION COMMUNITY. 3273 02:08:58,363 --> 02:08:59,264 IN THE SCIENTIFIC ROADMAP, PART 3274 02:08:59,331 --> 02:09:01,934 SHOULD BE TRYING TO TAKE CARE OF 3275 02:09:02,000 --> 02:09:03,535 AT LEAST THAT BRINGING PEOPLE 3276 02:09:03,602 --> 02:09:09,174 INTO THE FIELD PIECE OF IT AS 3277 02:09:09,241 --> 02:09:10,542 WELL AS POTENTIALLY TO -- 3278 02:09:10,609 --> 02:09:12,945 BECAUSE THAT ROADMAP WILL 3279 02:09:13,011 --> 02:09:14,913 INVOLVE FUNDING, WITH THAT IS 3280 02:09:14,980 --> 02:09:16,115 MOTIVATION TO STAN'S EARLIER 3281 02:09:16,181 --> 02:09:17,850 POINT, HOW PEOPLE NEED TO BE 3282 02:09:17,916 --> 02:09:19,084 MOTIVATED TO GET INTO THESE 3283 02:09:19,151 --> 02:09:20,919 SPACES AND SEE THERE'S A FUTURE. 3284 02:09:20,986 --> 02:09:26,692 THEY START A RESEARCH PROGRAM 3285 02:09:26,758 --> 02:09:28,727 THAT'S GOING TO BE 3286 02:09:28,794 --> 02:09:29,628 (INDISCERNIBLE) FOR TIME. 3287 02:09:29,695 --> 02:09:31,330 >> THIS HAS BEEN SUPER HELPFUL 3288 02:09:31,396 --> 02:09:32,464 JUST THIS MEETING AND HEARING 3289 02:09:32,531 --> 02:09:33,932 FROM THE OTHER GROUPS BECAUSE I 3290 02:09:33,999 --> 02:09:36,034 THINK THE CONNECTIONS WITH THESE 3291 02:09:36,101 --> 02:09:37,769 OTHER COMMITTEES BECOME VERY 3292 02:09:37,836 --> 02:09:39,338 OBVIOUS, RIGHT? 3293 02:09:39,404 --> 02:09:42,474 SO IF THERE'S A RESEARCH 3294 02:09:42,541 --> 02:09:44,009 ROADMAP, THAT INCLUDES CORE 3295 02:09:44,076 --> 02:09:45,310 GROUPS VERSUS THESE OTHER GROUPS 3296 02:09:45,377 --> 02:09:49,515 THAT ARE SORT OF WALKING IN, THE 3297 02:09:49,581 --> 02:09:56,722 ACT OF BRINGING THOSE PEOPLE IN 3298 02:09:56,788 --> 02:10:00,192 IS THE WORK OF THIS COMMITTEE 3299 02:10:00,259 --> 02:10:05,030 AND ACT OF PATIENT ACCESS IS 3300 02:10:05,097 --> 02:10:06,265 VERY CLEAR HOW THEY CONNECT TO 3301 02:10:06,331 --> 02:10:07,633 EACH OTHER. 3302 02:10:07,699 --> 02:10:10,202 A QUESTION I HAVE, WHAT WILL BE 3303 02:10:10,269 --> 02:10:17,376 THE THING FOR THIS GROUP THAT 3304 02:10:17,442 --> 02:10:18,677 MAKES THAT FAIL OR WHAT WILL 3305 02:10:18,744 --> 02:10:23,382 MAKE THAT LIKELY TO BE 3306 02:10:23,448 --> 02:10:23,715 SUCCESSFUL? 3307 02:10:23,782 --> 02:10:25,250 I DON'T NEED TO HEAR FROM YOU 3308 02:10:25,317 --> 02:10:27,119 BECAUSE I KNOW THE IDEAS, I'M 3309 02:10:27,186 --> 02:10:28,754 CURIOUS WHAT YOU THINK, WHAT ARE 3310 02:10:28,820 --> 02:10:30,522 THINGS LIKELY TO SCREW THIS UP 3311 02:10:30,589 --> 02:10:35,227 AND CAUSE IT TO BE A NOTHING OR 3312 02:10:35,294 --> 02:10:43,135 WHAT MAKES IT WORK? 3313 02:10:43,202 --> 02:10:49,641 >> I'M GOING TO ARGUE FROM TOP 3314 02:10:49,708 --> 02:10:52,611 TOWN DOWN, SAN ANTONIO BREAST 3315 02:10:52,678 --> 02:10:55,781 CANCER MEETINGS, I SAT DOWN, FOR 3316 02:10:55,847 --> 02:10:56,982 AN ORAL PRESENTATION OR POSTER, 3317 02:10:57,049 --> 02:10:58,250 GOT NOTHING. 3318 02:10:58,317 --> 02:11:03,722 I LOOKED THROUGH THE PROGRAM, 3319 02:11:03,789 --> 02:11:04,089 NOTHING. 3320 02:11:04,156 --> 02:11:10,062 FINALLY SURGEONS WHO DO 3321 02:11:10,128 --> 02:11:10,529 MICROVASCULAR APPROACH 3322 02:11:10,596 --> 02:11:11,897 APPROACHED THE COMMITTEE AND 3323 02:11:11,964 --> 02:11:15,701 SAID WE WANTED TO SPEAK, TO GET 3324 02:11:15,767 --> 02:11:18,770 CREDIBILITY AND REIMBURSEMENT, 3325 02:11:18,837 --> 02:11:21,173 MAY ALREADY BE GETTING 3326 02:11:21,240 --> 02:11:21,506 REIMBURSEMENT. 3327 02:11:21,573 --> 02:11:23,175 TOP-DOWN IF PHYSICIANS ARE ABLE 3328 02:11:23,242 --> 02:11:26,111 TO CODE AND BUILD, THE 3329 02:11:26,178 --> 02:11:26,778 CONFERENCE MAYBE WILL LISTEN. 3330 02:11:26,845 --> 02:11:34,586 I DON'T KNOW. 3331 02:11:34,653 --> 02:11:37,289 JUST ONE EXAMPLE. 3332 02:11:37,356 --> 02:11:39,258 >> AGAIN, I THINK TO BRING 3333 02:11:39,324 --> 02:11:42,995 PEOPLE -- THIS IS REALLY JUST 3334 02:11:43,061 --> 02:11:45,397 SORT OF RESEARCHER FOCUSED. 3335 02:11:45,464 --> 02:11:48,900 THERE NEEDS TO BE AN ABILITY TO 3336 02:11:48,967 --> 02:11:50,335 HAVE A SUSTAINED RESEARCH 3337 02:11:50,402 --> 02:11:50,569 PROGRAM. 3338 02:11:50,636 --> 02:11:54,373 YOU KNOW, SORT OF THE ONE YEAR, 3339 02:11:54,439 --> 02:11:56,541 TWO YEAR FUNDING IS GREAT IF 3340 02:11:56,608 --> 02:11:58,277 YOU'RE ALREADY IN THAT FIELD, 3341 02:11:58,343 --> 02:12:00,946 TRYING TO START A NEW PROJECT. 3342 02:12:01,013 --> 02:12:02,881 TO HAVE SOMEONE TAKE A LEAP THAT 3343 02:12:02,948 --> 02:12:06,551 HAS AN ESTABLISHED LAB TO START 3344 02:12:06,618 --> 02:12:08,287 A NEW PROJECT, THEY NEED TO SEE 3345 02:12:08,353 --> 02:12:09,288 FUTURE TO IT. 3346 02:12:09,354 --> 02:12:12,557 IF I'M A YOUNG PERSON CURIOUS 3347 02:12:12,624 --> 02:12:13,659 ABOUT LYMPHATICS THINKING, OKAY, 3348 02:12:13,725 --> 02:12:17,696 MY FIRST PROJECT IN MY NEW LAB 3349 02:12:17,763 --> 02:12:18,597 WILL BE A LYMPHATIC-BASED 3350 02:12:18,664 --> 02:12:19,765 PROJECT THEY NEED TO SEE 3351 02:12:19,831 --> 02:12:20,432 SUSTAINABLE FUNDING. 3352 02:12:20,499 --> 02:12:22,334 IT'S NOT JUST GOING TO BE A 3353 02:12:22,401 --> 02:12:23,835 COUPLE YEARS AND THIS DISAPPEARS 3354 02:12:23,902 --> 02:12:26,371 WHICH WHEN WE WERE TALKING ABOUT 3355 02:12:26,438 --> 02:12:27,272 THAT RESEARCH INFRASTRUCTURE, IT 3356 02:12:27,339 --> 02:12:29,641 NEEDS TO BE PERMANENT. 3357 02:12:29,708 --> 02:12:32,711 IT CAN'T BE -- I MEAN I LOVE THE 3358 02:12:32,778 --> 02:12:34,146 SENTIMENT BEHIND THE CANCER 3359 02:12:34,212 --> 02:12:35,981 MOONSHOT BUT I THINK IT WAS A 3360 02:12:36,048 --> 02:12:38,850 LITTLE BIT MISGUIDED BECAUSE THE 3361 02:12:38,917 --> 02:12:41,019 FUNDING WAS ALWAYS SHORT TERM 3362 02:12:41,086 --> 02:12:43,455 AND IT'S BEEN EFFECTIVE IN SOME 3363 02:12:43,522 --> 02:12:45,157 WAYS BUT I DON'T WANT TO SEE 3364 02:12:45,223 --> 02:12:46,858 THAT HAPPENING HERE. 3365 02:12:46,925 --> 02:12:49,461 SO WHEN YOU'RE ASKING ABOUT 3366 02:12:49,528 --> 02:12:51,997 FAILURE MODES, TO ME IT'S A LOT 3367 02:12:52,064 --> 02:12:53,799 OF SHORT TERM RESOURCES THAT 3368 02:12:53,865 --> 02:12:55,600 AREN'T SUSTAINED OVER TIME, THAT 3369 02:12:55,667 --> 02:13:00,272 PEOPLE LOSE INTEREST WHEN THE 3370 02:13:00,339 --> 02:13:02,007 FUNDING RFAs GO AWAY, WHEN 3371 02:13:02,074 --> 02:13:02,908 OPPORTUNITIES GO AWAY. 3372 02:13:02,974 --> 02:13:03,975 >> DO YOU REMEMBER IN 2008 WHEN 3373 02:13:04,042 --> 02:13:06,044 THERE WAS ALL THE MONEY THAT 3374 02:13:06,111 --> 02:13:12,651 CAME THROUGH FOR THE 3375 02:13:12,718 --> 02:13:13,652 SHOVEL-READY PROJECTS, 3376 02:13:13,719 --> 02:13:15,053 EVERYONE'S LAB EXPANDED 3377 02:13:15,120 --> 02:13:15,787 DRAMATICALLY. 3378 02:13:15,854 --> 02:13:18,857 TWO YEARS LATER EVERYONE LOST 3379 02:13:18,924 --> 02:13:19,524 THEIR JOB. 3380 02:13:19,591 --> 02:13:21,693 >> TO ME THAT'S THE FAILURE 3381 02:13:21,760 --> 02:13:22,060 MODE. 3382 02:13:22,127 --> 02:13:24,429 THAT'S WHY I KEPT USING THAT 3383 02:13:24,496 --> 02:13:25,030 WORD, PERMANENT. 3384 02:13:25,097 --> 02:13:29,434 THIS NEEDS TO BE LONG-TERM 3385 02:13:29,501 --> 02:13:32,337 SUSTAINED EFFORT. 3386 02:13:32,404 --> 02:13:33,805 >> CLINICAL SIDE, THE FAILURE 3387 02:13:33,872 --> 02:13:35,874 TRIP SWITCH IS THE DOOR WON'T 3388 02:13:35,941 --> 02:13:37,509 OPEN, RIGHT? 3389 02:13:37,576 --> 02:13:38,944 TO GO TO MERGE COLLEGE OF 3390 02:13:39,010 --> 02:13:39,544 SURGEONS, THEY DON'T WANT TO 3391 02:13:39,611 --> 02:13:40,679 TALK TO YOU. 3392 02:13:40,746 --> 02:13:43,582 IF WE CAN GET INTO DIALOGUE, WE 3393 02:13:43,648 --> 02:13:45,951 HAVE A COMPELLING STORY AND WE 3394 02:13:46,017 --> 02:13:47,552 CAN THINK CREATIVELY HOW TO 3395 02:13:47,619 --> 02:13:50,322 ACHIEVE GOALS BUT I THINK IT'S 3396 02:13:50,389 --> 02:13:53,258 MAKING THAT INITIAL CONTACT 3397 02:13:53,325 --> 02:13:55,560 THAT'S FAVORABLE THAT WILL THEN 3398 02:13:55,627 --> 02:13:59,030 OPEN TREMENDOUS OPPORTUNITIES IN 3399 02:13:59,097 --> 02:13:59,831 MANY, MANY AREAS. 3400 02:13:59,898 --> 02:14:01,533 SO WE HAVE TO THINK CAREFUL 3401 02:14:01,600 --> 02:14:03,468 MAYBE WHO TO APPROACH AND WHAT 3402 02:14:03,535 --> 02:14:06,104 THE PITCH OF THE INITIAL -- WHAT 3403 02:14:06,171 --> 02:14:08,006 THE INITIAL ELEVATOR PITCH. 3404 02:14:08,073 --> 02:14:10,675 >> CORRECT ME IF I'M WRONG, 3405 02:14:10,742 --> 02:14:14,646 ISN'T LIKE THE ABILITY TO GET 3406 02:14:14,713 --> 02:14:17,983 CPT CODING OTHER ABILITY TO TALK 3407 02:14:18,049 --> 02:14:20,519 TO COLLEGES ABOUT CHANGING 3408 02:14:20,585 --> 02:14:22,154 CURRICULUM TO INCLUDE EDUCATION 3409 02:14:22,220 --> 02:14:26,591 ON LYMPHATIC DISEASE AND ALSO TO 3410 02:14:26,658 --> 02:14:30,896 GET FUNDING WOULD BE RELYING ON 3411 02:14:30,962 --> 02:14:36,301 BEING ABLE TO QUANTIFY THIS 3412 02:14:36,368 --> 02:14:37,402 LYMPHEDEMA OR LYMPHATIC DISEASE 3413 02:14:37,469 --> 02:14:40,172 COMMUNITY BECAUSE ONCE YOU SEE 3414 02:14:40,238 --> 02:14:42,040 THE NUMBERS INDIVIDUALS AFFECTED 3415 02:14:42,107 --> 02:14:43,775 BY LYMPHATIC DISEASES MAYBE 3416 02:14:43,842 --> 02:14:45,210 PEOPLE WILL START TO LISTEN, 3417 02:14:45,277 --> 02:14:45,510 RIGHT? 3418 02:14:45,577 --> 02:14:47,712 AND SAY THIS IS WHAT WE NEED TO 3419 02:14:47,779 --> 02:14:48,947 PUT SOME FUNDING IN THEIR 3420 02:14:49,014 --> 02:14:50,982 BECAUSE SO MANY PEOPLE ARE 3421 02:14:51,049 --> 02:14:52,451 AFFECTED BY THIS DISEASE, WE 3422 02:14:52,517 --> 02:14:54,953 NEED TO LEARN MORE ABOUT IT AND 3423 02:14:55,020 --> 02:14:59,324 IT'S IMPACTING ALL THESE OTHER 3424 02:14:59,391 --> 02:15:02,260 AREAS, IT'S IMPACTING HEART 3425 02:15:02,327 --> 02:15:04,563 DISEASE OR OTHER AREAS IN THE 3426 02:15:04,629 --> 02:15:05,130 BODY. 3427 02:15:05,197 --> 02:15:11,603 SO I THINK A BIG GOAL WOULD BE 3428 02:15:11,670 --> 02:15:13,939 TO QUANTIFY HOW MANY PEOPLE THIS 3429 02:15:14,005 --> 02:15:15,607 IS IMPACTING, AND THIS IS A 3430 02:15:15,674 --> 02:15:17,175 LIFELONG THING, RIGHT? 3431 02:15:17,242 --> 02:15:18,577 NOT GOING AWAY. 3432 02:15:18,643 --> 02:15:23,915 THIS MANY PEOPLE ARE IMPACTED BY 3433 02:15:23,982 --> 02:15:24,082 IT. 3434 02:15:24,149 --> 02:15:27,018 SO, WHERE WE NEED TO GO, THINGS 3435 02:15:27,085 --> 02:15:28,286 WILL START TO OPEN. 3436 02:15:28,353 --> 02:15:28,720 >> I AGREE. 3437 02:15:28,787 --> 02:15:31,156 THE SIZE OF THE COMMUNITY, TO 3438 02:15:31,223 --> 02:15:33,592 THIS GROUP'S POINT, THE BURDEN 3439 02:15:33,658 --> 02:15:34,693 OF THESE DISEASES. 3440 02:15:34,759 --> 02:15:36,628 AGAIN, I KNOW THERE ARE MORE 3441 02:15:36,695 --> 02:15:37,929 COMMENTS AND I APOLOGIZE FOR 3442 02:15:37,996 --> 02:15:39,364 HAVING TO STIFLE THE 3443 02:15:39,431 --> 02:15:42,868 CONVERSATION BUT WE DO NEED TO 3444 02:15:42,934 --> 02:15:44,236 KEEP MOVING. 3445 02:15:44,302 --> 02:15:44,603 ONE LAST ONE. 3446 02:15:44,669 --> 02:15:47,672 >> I'D LIKE TO FOLLOW UP ON WHAT 3447 02:15:47,739 --> 02:15:49,074 STAN SAID, AMERICAN COLLEGE OF 3448 02:15:49,140 --> 02:15:51,309 SURGEONS DOESN'T WANT A 3449 02:15:51,376 --> 02:15:51,643 DIALOGUE. 3450 02:15:51,710 --> 02:15:52,811 CAN YOU ELABORATE ON WHY YOU 3451 02:15:52,878 --> 02:15:53,578 THINK THAT IS? 3452 02:15:53,645 --> 02:15:55,213 THAT WOULD HELP US THINK ABOUT 3453 02:15:55,280 --> 02:15:59,718 WAYS AROUND IT, IT MAY BE 3454 02:15:59,784 --> 02:16:00,819 THERE'S NO THERAPEUTICS, NO 3455 02:16:00,886 --> 02:16:03,154 SPACE TO WORK IN, IS THAT IT? 3456 02:16:03,221 --> 02:16:05,290 >> I DIDN'T MEAN TO SINGLE THEM 3457 02:16:05,357 --> 02:16:05,724 OUT. 3458 02:16:05,790 --> 02:16:06,858 IT'S REPRESENTATIVE. 3459 02:16:06,925 --> 02:16:09,561 >> I'M NOT TRYING TO TRASH. 3460 02:16:09,628 --> 02:16:12,797 IMPORTANT COMMUNITY. 3461 02:16:12,864 --> 02:16:13,865 >> EMBLEMATIC OF ANY ONE OF 3462 02:16:13,932 --> 02:16:14,332 THESE SOCIETIES. 3463 02:16:14,399 --> 02:16:16,768 THE ISSUE IS THEY HAVE TO 3464 02:16:16,835 --> 02:16:17,669 PERCEIVE THE PROBLEM 3465 02:16:17,736 --> 02:16:20,171 EQUIVALENTLY OR AT LEAST BE OPEN 3466 02:16:20,238 --> 02:16:22,040 TO PERCEPTION AND MAYBE 3467 02:16:22,107 --> 02:16:25,343 UNDERSTAND HOW SMALL THE INITIAL 3468 02:16:25,410 --> 02:16:29,814 AVENUES NEED TO BE JUST INSTEAD 3469 02:16:29,881 --> 02:16:32,350 OF COMPETITIVELY SENDING 3470 02:16:32,417 --> 02:16:38,156 ABSTRACTS FOR 10-MINUTE 3471 02:16:38,223 --> 02:16:41,526 PRESENTATION, AS YOU SAID, IF 3472 02:16:41,593 --> 02:16:43,962 THEY COULD HIGHLIGHT LYMPHATICS 3473 02:16:44,029 --> 02:16:47,532 AT THE ANNUAL MEETING, 3474 02:16:47,599 --> 02:16:48,166 SELF-PERPETUATING. 3475 02:16:48,233 --> 02:16:49,834 ASKS ARE SMALL BUT WE JUST NEED 3476 02:16:49,901 --> 02:16:52,370 TO GET THEM IN DIALOGUE SO THEY 3477 02:16:52,437 --> 02:16:53,705 EVEN ACKNOWLEDGE THEY NEED TO BE 3478 02:16:53,772 --> 02:16:54,339 TALKING TO US. 3479 02:16:54,406 --> 02:16:57,576 >> THANK YOU FOR THE POINT. 3480 02:16:57,642 --> 02:17:03,481 WE'RE GOING TO CIRCLE BACK TO 3481 02:17:03,548 --> 02:17:05,016 BABAK, HOPING THE TECHNOLOGY IS 3482 02:17:05,083 --> 02:17:08,653 UP AND WE NEED TO FLIP BACK TEN 3483 02:17:08,720 --> 02:17:08,887 SLIDES. 3484 02:17:08,954 --> 02:17:11,656 >> SORRY ABOUT THAT. 3485 02:17:11,723 --> 02:17:12,757 I WISH I WAS THERE. 3486 02:17:12,824 --> 02:17:14,092 OF COURSE THE TECHNOLOGY BREAKS 3487 02:17:14,159 --> 02:17:17,162 DOWN RIGHT WHEN I NEED IT. 3488 02:17:17,228 --> 02:17:21,099 >> THANK YOU, BABAK. 3489 02:17:21,166 --> 02:17:23,602 SLIDES ARE GOOD TO GO. 3490 02:17:23,668 --> 02:17:25,570 >> BABAK, CAN YOU SAY NEXT SLIDE 3491 02:17:25,637 --> 02:17:26,338 WHEN YOU'RE READY. 3492 02:17:26,404 --> 02:17:28,106 >> YOU CAN GO AHEAD AND GET 3493 02:17:28,173 --> 02:17:28,406 STARTED. 3494 02:17:28,473 --> 02:17:32,077 >> I DON'T SEE THE SLIDES ON THE 3495 02:17:32,143 --> 02:17:33,912 PROJECTION. 3496 02:17:33,979 --> 02:17:39,384 >> WE'RE WORKING ON IT. 3497 02:17:39,451 --> 02:17:43,088 >> WE CAN SEE YOU THOUGH. 3498 02:17:43,154 --> 02:17:44,623 >> THERE WE GO. 3499 02:17:44,689 --> 02:17:46,925 >> ALL YOURS. 3500 02:17:46,992 --> 02:17:48,226 >> OKAY, GOOD. 3501 02:17:48,293 --> 02:17:50,996 WE HAVE A VERY SMALL COMMITTEE 3502 02:17:51,062 --> 02:17:53,198 SO THIS IS BASED ON THE WORK OF 3503 02:17:53,264 --> 02:17:55,266 FOUR PEOPLE AND I WANT TO THANK 3504 02:17:55,333 --> 02:18:05,877 THEM IN ADVANCE FOR THEIR INPUT. 3505 02:18:06,077 --> 02:18:07,112 OUR VISION STATEMENT IS THE SAME 3506 02:18:07,178 --> 02:18:09,381 AS MANY OTHERS TALKED ABOUT 3507 02:18:09,447 --> 02:18:10,882 TODAY, REVOLUTION ACCESS TO 3508 02:18:10,949 --> 02:18:12,117 LYMPHATIC DISEASE TREATMENT BY 3509 02:18:12,183 --> 02:18:17,889 ADVOCATING FOR THIRD PARTY 3510 02:18:17,956 --> 02:18:18,523 COVERAGE, INCENTIVIZE PROVIDERS 3511 02:18:18,590 --> 02:18:21,292 TO INNOVATE, COME UP WITH 3512 02:18:21,359 --> 02:18:23,161 PROCEDURES, NEW TREATMENTS, AND 3513 02:18:23,228 --> 02:18:25,230 FOSTERING CUTTING-EDGE RESEARCH 3514 02:18:25,296 --> 02:18:27,232 TO IDENTIFY EFFECTIVE THERAPIES, 3515 02:18:27,298 --> 02:18:28,867 ACHIEVING THIS WILL ESTABLISH 3516 02:18:28,933 --> 02:18:31,369 HOLISTIC HEALTH CARE TO PROVIDE 3517 02:18:31,436 --> 02:18:32,704 COMPREHENSIVE SYSTEM AND ADDRESS 3518 02:18:32,771 --> 02:18:34,973 ALL ASPECTS OF HELD AND 3519 02:18:35,040 --> 02:18:35,373 WELL-BEING. 3520 02:18:35,440 --> 02:18:37,042 THIS IS IMPORTANT BECAUSE IN 3521 02:18:37,108 --> 02:18:39,277 MEDICINE OFTENTIMES WE THINK 3522 02:18:39,344 --> 02:18:46,084 ABOUT THE PHYSICAL ISSUES BUT 3523 02:18:46,151 --> 02:18:48,019 WITH LYMPHATIC DISEASE MENTAL 3524 02:18:48,086 --> 02:18:52,057 AND SOCIAL NEEDS ARE VERY 3525 02:18:52,123 --> 02:18:53,858 IMPORTANT ALSO. 3526 02:18:53,925 --> 02:18:55,360 LYMPHATIC DISEASES ARE OFTEN NOT 3527 02:18:55,427 --> 02:18:59,397 COVERED OR INCLUDED IN DISEASES 3528 02:18:59,464 --> 02:19:01,833 COVERED BY INSURANCE, AND WE 3529 02:19:01,900 --> 02:19:04,002 WANT TO CREATE A BETTER 3530 02:19:04,069 --> 02:19:07,405 EXPERIENCE BY BEING ABLE TO 3531 02:19:07,472 --> 02:19:09,908 ENGAGE WITH INSURANCE PAYERS, 3532 02:19:09,974 --> 02:19:11,710 MEDICAL DEVICE VENDORS AND 3533 02:19:11,776 --> 02:19:13,078 PHARMACEUTICAL COMPANIES TO 3534 02:19:13,144 --> 02:19:14,579 INVESTIGATE NEW TREATMENTS AND 3535 02:19:14,646 --> 02:19:15,714 EFFECTIVE TREATMENTS. 3536 02:19:15,780 --> 02:19:18,583 THIS IS REALLY IMPORTANT BECAUSE 3537 02:19:18,650 --> 02:19:20,885 OF COURSE LYMPHATIC DISEASES ARE 3538 02:19:20,952 --> 02:19:22,320 UNDERSERVED, NOT HAVING ACCESS 3539 02:19:22,387 --> 02:19:29,627 TO TREATMENTS IS A BIG PROBLEM. 3540 02:19:29,694 --> 02:19:30,428 NEXT SLIDE. 3541 02:19:30,495 --> 02:19:33,765 YOU'VE HEARD A LOT SAID ABOUT 3542 02:19:33,832 --> 02:19:34,766 CPT CODES TODAY AND 3543 02:19:34,833 --> 02:19:37,168 UNFORTUNATELY THIS IS VERY, VERY 3544 02:19:37,235 --> 02:19:39,270 IMPORTANT, HAVING A CPT CODE FOR 3545 02:19:39,337 --> 02:19:40,705 A PROCEDURE OR DIAGNOSIS IS THE 3546 02:19:40,772 --> 02:19:43,108 ONLY WAY TO GET PAID FROM AN 3547 02:19:43,174 --> 02:19:44,109 INSURANCE COMPANY. 3548 02:19:44,175 --> 02:19:46,611 AND THAT REQUIRES WORKING WITH 3549 02:19:46,678 --> 02:19:48,947 CMS AND SETTING MEDICAL 3550 02:19:49,013 --> 02:19:50,215 STANDARDS FOR THIS. 3551 02:19:50,281 --> 02:19:57,188 CPT CODES NEED TO BE LINKED TO 3552 02:19:57,255 --> 02:19:58,790 ICD-10 DIAGNOSIS CODES. 3553 02:19:58,857 --> 02:20:00,291 ICD-10s ARE FOR DIAGNOSIS. 3554 02:20:00,358 --> 02:20:04,129 WE HAVE LOTS OF CODES FOR THE 3555 02:20:04,195 --> 02:20:05,897 LYMPHATIC DISEASES BUT NO CPT 3556 02:20:05,964 --> 02:20:07,599 CODES SPECIFIC TO LYMPHATIC 3557 02:20:07,665 --> 02:20:08,333 DISEASES. 3558 02:20:08,399 --> 02:20:11,569 MOST IN THIS FIELD END UP USING 3559 02:20:11,636 --> 02:20:13,404 BLOOD VESSEL REPAIR CODES WHICH 3560 02:20:13,471 --> 02:20:14,973 USUALLY GET DENIED BY INSURANCE 3561 02:20:15,039 --> 02:20:15,306 COMPANIES. 3562 02:20:15,373 --> 02:20:17,842 I THINK IT'S IMPORTANT FOR US TO 3563 02:20:17,909 --> 02:20:21,579 BE ABLE TO HAVE DIALOGUE AND 3564 02:20:21,646 --> 02:20:22,447 ESTABLISH NEED FOR 3565 02:20:22,514 --> 02:20:23,314 LYMPHATIC-SPECIFIC CPT CODES AND 3566 02:20:23,381 --> 02:20:28,353 WE'LL BE ABLE TO MEASURE SUCCESS 3567 02:20:28,419 --> 02:20:29,454 BY ADDRESSING OUR INTERACTION 3568 02:20:29,521 --> 02:20:32,557 WITH OTHER AGENCIES AND LOOKING 3569 02:20:32,624 --> 02:20:34,592 AT HOW HAVING CPT CODES 3570 02:20:34,659 --> 02:20:37,462 DECREASES PATIENT EXPENSES. 3571 02:20:37,529 --> 02:20:39,097 NEXT SLIDE. 3572 02:20:39,164 --> 02:20:40,932 HOW IS HARD, UNFORTUNATELY. 3573 02:20:40,999 --> 02:20:43,568 I THINK WE NEED TO UNDERSTAND 3574 02:20:43,635 --> 02:20:46,838 THE FULL SCOPE OF THE DISEASE AS 3575 02:20:46,905 --> 02:20:47,972 EVERYONE MENTIONED AND NEED TO 3576 02:20:48,039 --> 02:20:48,973 UNDERSTAND WHAT TREATMENTS ARE 3577 02:20:49,040 --> 02:20:51,409 OUT THERE NOW AND HOW EFFECTIVE 3578 02:20:51,476 --> 02:20:52,510 THESE ARE. 3579 02:20:52,577 --> 02:20:54,345 AND WHAT DEGREE OF EVIDENCE DO 3580 02:20:54,412 --> 02:20:55,713 WE HAVE FOR EFFICACY. 3581 02:20:55,780 --> 02:21:02,220 AND WE NEED TO BE ABLE TO 3582 02:21:02,287 --> 02:21:09,527 LEVERAGE THIS UNDERSTANDING AND 3583 02:21:09,594 --> 02:21:11,196 WHITE PAPERS ON LYMPHATIC 3584 02:21:11,262 --> 02:21:14,032 DISEASE TO ACHIEVE TREATMENT FOR 3585 02:21:14,098 --> 02:21:17,202 THESE TREATMENTS NOT CONSIDERED 3586 02:21:17,268 --> 02:21:18,770 EXPERIMENTAL. 3587 02:21:18,837 --> 02:21:21,139 NEXT SLIDE. 3588 02:21:21,206 --> 02:21:23,875 BARRIERS, THERE'S NO REAL 3589 02:21:23,942 --> 02:21:26,244 CRITERIA TO COME UP WITH 3590 02:21:26,311 --> 02:21:29,581 UNDERSTANDING OF WHAT IS 3591 02:21:29,647 --> 02:21:30,615 EXPERIMENTAL AND WHAT IS 3592 02:21:30,682 --> 02:21:34,085 TREATMENT FOR PROCEDURES. 3593 02:21:34,152 --> 02:21:36,921 WE HAVE GOOD METHODS FOR DRUGS 3594 02:21:36,988 --> 02:21:38,022 BUT FOR PROCEDURES NO GOOD 3595 02:21:38,089 --> 02:21:39,991 METHOD TO IDENTIFY WHICH 3596 02:21:40,058 --> 02:21:41,759 PROCEDURES ARE STANDARD OF CARE 3597 02:21:41,826 --> 02:21:42,827 AND WHICH ARE EXPERIMENTAL. 3598 02:21:42,894 --> 02:21:46,431 THIS IS A REALLY BIG PROBLEM IN 3599 02:21:46,497 --> 02:21:46,798 LYMPHATIC. 3600 02:21:46,865 --> 02:21:48,867 PART IS BECAUSE OF THE LACK OF 3601 02:21:48,933 --> 02:21:51,970 CLARITY THAT WE HAVE FOR 3602 02:21:52,036 --> 02:21:52,770 LYMPHATIC DISEASE AND 3603 02:21:52,837 --> 02:21:53,338 TREATMENTS. 3604 02:21:53,404 --> 02:21:55,506 THERE'S LOTS OF NAMES WE GIVE TO 3605 02:21:55,573 --> 02:21:58,009 THESE DISORDERS, PATIENTS AND 3606 02:21:58,076 --> 02:21:59,210 PROVIDERS GET CONFUSED, AND 3607 02:21:59,277 --> 02:22:01,846 REALLY THE PROBLEM ENDS UP BEING 3608 02:22:01,913 --> 02:22:04,382 EDUCATION OF HEALTH CARE 3609 02:22:04,449 --> 02:22:05,450 PROFESSIONALS TO DIAGNOSIS 3610 02:22:05,516 --> 02:22:06,718 DISEASES AND INSURANCE COMPANIES 3611 02:22:06,784 --> 02:22:08,419 TO RECOGNIZE THEM AS A REAL 3612 02:22:08,486 --> 02:22:09,354 PROBLEM. 3613 02:22:09,420 --> 02:22:14,926 SO IT ALSO CIRCLES BACK TO THE 3614 02:22:14,993 --> 02:22:15,793 LYMPHATICS-SPECIFIC CPT CODES, 3615 02:22:15,860 --> 02:22:16,995 MENTIONED THIS HAS BEEN HELD UP 3616 02:22:17,061 --> 02:22:19,964 BECAUSE IN ORDER TO ESTABLISH A 3617 02:22:20,031 --> 02:22:23,334 NEW CPT CODE YOU NEED TO TAKE 3618 02:22:23,401 --> 02:22:27,171 FUNDS FROM OTHER CPT CODES, A 3619 02:22:27,238 --> 02:22:30,675 ZERO SUM GAME AND THAT'S WHY THE 3620 02:22:30,742 --> 02:22:31,442 AMA OR PERHAPS AMERICAN COLLEGE 3621 02:22:31,509 --> 02:22:35,046 OF SURGEONS ARE NOT QUITE SO 3622 02:22:35,113 --> 02:22:36,814 INTERESTING IN LYMPHATIC 3623 02:22:36,881 --> 02:22:37,582 SURGERY. 3624 02:22:37,649 --> 02:22:41,286 WE NEED TO ENGAGE CLINICIANS, 3625 02:22:41,352 --> 02:22:42,520 SURGEONS, CMS, AND INSURANCE 3626 02:22:42,587 --> 02:22:45,490 COMPANIES TO BE ABLE TO DO THIS. 3627 02:22:45,556 --> 02:22:47,926 THE ACTION PLAN IS OF COURSE WE 3628 02:22:47,992 --> 02:22:49,861 WANT TO UNDERSTAND THE SCOPE OF 3629 02:22:49,928 --> 02:22:51,029 THE DISEASE. 3630 02:22:51,095 --> 02:22:54,432 WE WANT TO UNDERSTAND WHAT CMS 3631 02:22:54,499 --> 02:22:55,733 COVERS CURRENTLY, WHAT'S 3632 02:22:55,800 --> 02:22:59,137 CONSIDERED STANDARD OF CARE, 3633 02:22:59,203 --> 02:23:01,272 WHAT ARE THE FDA-SPONSORED 3634 02:23:01,339 --> 02:23:02,307 ORPHAN DRUG DISCOVERY PROGRAMS, 3635 02:23:02,373 --> 02:23:05,276 AND WE NEED TO DO A SYSTEMATIC 3636 02:23:05,343 --> 02:23:07,712 REVIEW OF LITERATURE LOOKING FOR 3637 02:23:07,779 --> 02:23:10,815 TREATMENTS THAT HAVE DEGREES OF 3638 02:23:10,882 --> 02:23:12,617 EFFICACY AND UNDERSTAND HOW MUCH 3639 02:23:12,684 --> 02:23:14,152 EFFICACY THE TREATMENTS HAVE. 3640 02:23:14,218 --> 02:23:16,387 THERE'S A LOT OF THINGS THAT ARE 3641 02:23:16,454 --> 02:23:18,356 PUBLISHED IN LITERATURE AND SOME 3642 02:23:18,423 --> 02:23:19,424 THINGS ARE AFFECTIVE, OTHERS ARE 3643 02:23:19,490 --> 02:23:21,793 NOT BUT WE NEED TO LOOK FOR 3644 02:23:21,859 --> 02:23:24,262 TREATMENTS THAT HAVE BEEN USED 3645 02:23:24,329 --> 02:23:26,230 BY MULTIPLE GROUPS IN STUDIES 3646 02:23:26,297 --> 02:23:28,399 THAT HAVE GOOD DESIGN TO BE ABLE 3647 02:23:28,466 --> 02:23:30,568 TO ADVOCATE FOR THESE TREATMENTS 3648 02:23:30,635 --> 02:23:31,636 BEING COVERED. 3649 02:23:31,703 --> 02:23:34,672 AND WE NEED TO DO THIS BY 3650 02:23:34,739 --> 02:23:36,441 LEARNING THIS AND UNDERSTANDING 3651 02:23:36,507 --> 02:23:40,878 THE STAKEHOLDER MAPPING. 3652 02:23:40,945 --> 02:23:41,612 NEXT SLIDE. 3653 02:23:41,679 --> 02:23:44,215 IN YEAR TWO WE WOULD FORMULATE 3654 02:23:44,282 --> 02:23:47,652 RECOMMENDATIONS BASED ON OUR 3655 02:23:47,719 --> 02:23:48,853 FINDINGS OF SYSTEMATIC REVIEWS, 3656 02:23:48,920 --> 02:23:50,822 REALLY IMPORTANT TO THIS. 3657 02:23:50,888 --> 02:23:52,490 AND WE WOULD ADVOCATE FOR 3658 02:23:52,557 --> 02:23:55,126 DEVELOPING A NEW CPT CODE FOR 3659 02:23:55,193 --> 02:23:57,528 LYMPHATIC DISEASES AND 3660 02:23:57,595 --> 02:23:57,929 TREATMENTS. 3661 02:23:57,996 --> 02:24:00,498 AND THE KEY ISSUE HERE IS 3662 02:24:00,565 --> 02:24:02,467 UNDERSTAND THE RELATIVE VALUE 3663 02:24:02,533 --> 02:24:03,534 FOR THESE TREATMENTS, RELATIVE 3664 02:24:03,601 --> 02:24:06,604 VALUE UNITS ARE ASSIGNED TO EACH 3665 02:24:06,671 --> 02:24:08,339 CPT CODE AND THOSE ARE USED TO 3666 02:24:08,406 --> 02:24:11,142 DETERMINE HOW MUCH THE HOSPITALS 3667 02:24:11,209 --> 02:24:12,810 GET AND WHAT THE PHYSICIAN FEES 3668 02:24:12,877 --> 02:24:15,113 ARE AND SO THESE ARE VERY 3669 02:24:15,179 --> 02:24:15,613 IMPORTANT. 3670 02:24:15,680 --> 02:24:19,150 AND I THINK THERE'S NO REAL 3671 02:24:19,217 --> 02:24:20,685 METHOD AVAILABLE NOW FOR 3672 02:24:20,752 --> 02:24:22,220 COVERAGE FOR OFF-LABEL DRUG 3673 02:24:22,286 --> 02:24:24,956 USAGE, IF YOU HAVE A DRUG THAT'S 3674 02:24:25,023 --> 02:24:25,857 ALREADY APPROVED FOR ONE 3675 02:24:25,923 --> 02:24:28,126 INDICATION AND YOU TRY TO USE IT 3676 02:24:28,192 --> 02:24:29,427 FOR LYMPHATICS, FOR EXAMPLE, 3677 02:24:29,494 --> 02:24:31,396 THEY OFTEN GET DENIED BECAUSE 3678 02:24:31,462 --> 02:24:33,765 IT'S AN OFF-LABEL USE AND 3679 02:24:33,831 --> 02:24:34,532 CONSIDERED EXPERIMENTAL SO I 3680 02:24:34,599 --> 02:24:38,302 THINK THIS IS REALLY IMPORTANT. 3681 02:24:38,369 --> 02:24:39,637 NEXT SLIDE. 3682 02:24:39,704 --> 02:24:41,372 THIS PLAN IS VERY AMBITIOUS. 3683 02:24:41,439 --> 02:24:43,341 I'M NOT SURE IF IT'S FEASIBLE 3684 02:24:43,408 --> 02:24:47,045 BUT I THINK IN ORDER TO BE ABLE 3685 02:24:47,111 --> 02:24:49,914 TO ACHIEVE THE GOAL OF ENGAGING 3686 02:24:49,981 --> 02:24:51,983 THE THIRD PARTIES AND OBTAINING 3687 02:24:52,050 --> 02:24:53,518 COVERAGE FOR THESE TREATMENTS WE 3688 02:24:53,584 --> 02:24:55,253 REALLY NEED TO BE AMBITIOUS AND 3689 02:24:55,319 --> 02:24:56,921 WE'LL NEED HELP TO DO THIS. 3690 02:24:56,988 --> 02:24:58,790 I THINK THE MOST IMPORTANT 3691 02:24:58,856 --> 02:25:03,795 ASPECT OF THIS IS GOING TO BE 3692 02:25:03,861 --> 02:25:05,229 IDENTIFYING COMMON LYMPHATIC 3693 02:25:05,296 --> 02:25:06,798 DISEASES AND INITIATING A 3694 02:25:06,864 --> 02:25:09,167 LITERATURE REVIEW OF THE 3695 02:25:09,233 --> 02:25:12,770 TREATMENTS THAT ARE CURRENTLY IN 3696 02:25:12,837 --> 02:25:16,074 USE, EFFICACY, DISEASE BURDEN 3697 02:25:16,140 --> 02:25:18,342 AND ECONOMIC IMPACT AND BASED ON 3698 02:25:18,409 --> 02:25:19,677 THIS CONTINUE LITERATURE REVIEW 3699 02:25:19,744 --> 02:25:21,312 TO SEE WHAT METHODS ARE 3700 02:25:21,379 --> 02:25:26,217 AVAILABLE AND WHAT THE DEGREE OF 3701 02:25:26,284 --> 02:25:32,824 KNOWLEDGE IS ABOUT EACH PROGRAM 3702 02:25:32,890 --> 02:25:34,292 AND HOW EFFECTIVE PROGRAMS ARE 3703 02:25:34,358 --> 02:25:35,760 BASED ON REPORTED STUDIES. 3704 02:25:35,827 --> 02:25:37,195 LITERATURE IS THE KEY THING TO 3705 02:25:37,261 --> 02:25:39,464 BE ABLE TO GO TO THE INSURANCE 3706 02:25:39,530 --> 02:25:41,599 COMPANIES AND CMS AND PROVIDE 3707 02:25:41,666 --> 02:25:44,102 INFORMATION AND SHOW THEM THIS 3708 02:25:44,168 --> 02:25:45,636 IS NOT EXPERIMENTAL, THESE 3709 02:25:45,703 --> 02:25:46,604 TREATMENTS ARE NOT EXPERIMENTAL, 3710 02:25:46,671 --> 02:25:48,506 AND I THINK THAT'S THE MAIN SORT 3711 02:25:48,573 --> 02:25:49,674 OF FOCUS OF YEAR 2. 3712 02:25:49,740 --> 02:25:54,745 WE HOPE TO BE ABLE TO COME UP 3713 02:25:54,812 --> 02:25:56,247 WITH LYMPHATIC DISEASE CURRENTLY 3714 02:25:56,314 --> 02:26:01,052 NOT COVERED BY CPT CODES AND 3715 02:26:01,119 --> 02:26:04,422 ENGAGING CMS TO DEVELOP NEW CPT 3716 02:26:04,489 --> 02:26:05,356 CODES FOR THESE PROCEDURES. 3717 02:26:05,423 --> 02:26:06,757 NEXT SLIDE. 3718 02:26:06,824 --> 02:26:07,625 THAT'S IT. 3719 02:26:07,692 --> 02:26:13,698 I'M HAPPY TO TAKE QUESTIONS. 3720 02:26:13,764 --> 02:26:15,666 STAN IS THE EXPERT, AND MAX AS 3721 02:26:15,733 --> 02:26:17,201 WELL, IN THE AUDIENCE. 3722 02:26:17,268 --> 02:26:19,804 >> I'LL OPEN UP TO THE GROUP. 3723 02:26:19,871 --> 02:26:21,239 WHAT'S WORKING, WHAT BUILDS DO 3724 02:26:21,305 --> 02:26:22,974 WE HAVE, WHAT CONNECTION POINTS 3725 02:26:23,040 --> 02:26:24,108 DO WE HAVE? 3726 02:26:24,175 --> 02:26:26,611 >> JUST TO HELP THE 3727 02:26:26,677 --> 02:26:28,246 NON-PHYSICIANS UNDERSTAND HOW 3728 02:26:28,312 --> 02:26:31,516 THE MONEY RUNS, SO DO PHYSICIANS 3729 02:26:31,582 --> 02:26:34,152 GET A SET AMOUNT OF MONEY PER 3730 02:26:34,218 --> 02:26:36,587 PATIENT, SAY, WITHIN A HEALTH 3731 02:26:36,654 --> 02:26:38,189 PLAN THEY COULD SPEND AS THEY 3732 02:26:38,256 --> 02:26:39,857 LIKE, YOU'RE SAYING IF YOU 3733 02:26:39,924 --> 02:26:42,126 DEVELOP NEW CPT CODES FOR 3734 02:26:42,193 --> 02:26:43,394 LYMPHATICS, IT'S GOING TO TAKE 3735 02:26:43,461 --> 02:26:46,764 AWAY FROM SOME OTHERS. 3736 02:26:46,831 --> 02:26:47,865 HOW DOES THAT WORK? 3737 02:26:47,932 --> 02:26:49,500 >> THAT'S A GOOD QUESTION. 3738 02:26:49,567 --> 02:26:51,502 PHYSICIANS DON'T GET THE MONEY. 3739 02:26:51,569 --> 02:26:53,538 IT'S THE BUDGET FOR CMS. 3740 02:26:53,604 --> 02:26:55,206 CMS HAS AN ANNUAL BUDGET. 3741 02:26:55,273 --> 02:26:58,342 THAT BUDGET IS DIVIDED INTO 3742 02:26:58,409 --> 02:26:59,610 VARIOUS CPT CODES, THERE'S ONLY 3743 02:26:59,677 --> 02:27:01,546 SO MUCH MONEY AVAILABLE. 3744 02:27:01,612 --> 02:27:03,314 IF THERE'S A NEW TREATMENT THEN 3745 02:27:03,381 --> 02:27:05,683 THAT NEW TREATMENT AND THAT NEW 3746 02:27:05,750 --> 02:27:07,485 CPT CODE NEEDS TO TAKE AWAY FROM 3747 02:27:07,552 --> 02:27:11,122 OTHER TREATMENTS SO IT BECOMES A 3748 02:27:11,189 --> 02:27:12,023 VERY BIG POLITICAL PROBLEM 3749 02:27:12,089 --> 02:27:16,127 BECAUSE YOU ESSENTIALLY HAVE TO 3750 02:27:16,194 --> 02:27:17,962 FIGHT OTHER DISORDERS AND OTHER 3751 02:27:18,029 --> 02:27:20,131 ADVOCACY GROUPS IN ORDER TO GET 3752 02:27:20,198 --> 02:27:21,999 FUNDING FOR YOURS. 3753 02:27:22,066 --> 02:27:24,769 SO THIS IS MUCH, MUCH MORE 3754 02:27:24,835 --> 02:27:28,606 DIFFICULT THAN YOU COULD EXPECT 3755 02:27:28,673 --> 02:27:30,975 IT TO BE BECAUSE JUST LIKE 3756 02:27:31,042 --> 02:27:32,510 LYMPHATIC DISEASES THE OTHER 3757 02:27:32,577 --> 02:27:33,778 DISEASES ALSO HAVE STRONG 3758 02:27:33,844 --> 02:27:35,079 ADVOCACY GROUPS AND WILL FIGHT 3759 02:27:35,146 --> 02:27:37,215 BACK ON EFFORTS TO ESTABLISH CPT 3760 02:27:37,281 --> 02:27:41,352 CODES AND TAKE AWAY FROM THEIR 3761 02:27:41,419 --> 02:27:42,019 ESSENTIALLY. 3762 02:27:42,086 --> 02:27:47,625 STAN, DO YOU WANT TO COMMENT ON 3763 02:27:47,692 --> 02:27:47,825 THAT? 3764 02:27:47,892 --> 02:27:56,634 >> HE STEPPED OUT. 3765 02:27:56,701 --> 02:28:01,505 >> GOOD TIMING. 3766 02:28:01,572 --> 02:28:03,174 >> IT'S DIFFICULT FOR ME TO 3767 02:28:03,241 --> 02:28:09,947 CONVINCE OTHER PHYSICIANS TO DO 3768 02:28:10,014 --> 02:28:11,315 PROCEDURES BECAUSE RIGHT NOW, 3769 02:28:11,382 --> 02:28:14,752 LIKE CHEST X-RAY, A LITTLE BIT 3770 02:28:14,819 --> 02:28:17,288 MORE, THEY CAN SPEND SOMETIMES 3771 02:28:17,355 --> 02:28:18,356 SIX, SEVEN, EIGHT HOURS. 3772 02:28:18,422 --> 02:28:22,627 RIGHT NOW MY TYPE OF PROCEDURES, 3773 02:28:22,693 --> 02:28:26,564 WHAT I DO, ENTHUSIASTIC IN A FEW 3774 02:28:26,631 --> 02:28:27,765 PLACES BECAUSE PRIVATE PRACTICE 3775 02:28:27,832 --> 02:28:31,168 I'M NOT GOING TO SPEND EIGHT 3776 02:28:31,235 --> 02:28:32,336 HOURS. 3777 02:28:32,403 --> 02:28:33,471 THE MORE YOU CREATE INCENTIVE OF 3778 02:28:33,537 --> 02:28:37,942 COURSE PEOPLE WILL START TO DO 3779 02:28:38,009 --> 02:28:38,376 MORE. 3780 02:28:38,442 --> 02:28:39,910 >> I'M GOING TO COMMENT ON THAT 3781 02:28:39,977 --> 02:28:41,712 FOR JUST A SECOND, MAX. 3782 02:28:41,779 --> 02:28:44,115 I'M GOING TO BRING THAT BACK. 3783 02:28:44,181 --> 02:28:46,017 THAT'S THE RVU COMPONENT. 3784 02:28:46,083 --> 02:28:48,753 EACH CPT HAS AN RVU ASSOCIATED. 3785 02:28:48,819 --> 02:28:51,188 WHAT MAX IS SAYING THE CPT CODES 3786 02:28:51,255 --> 02:28:53,190 WE CAN CURRENTLY USE FOR 3787 02:28:53,257 --> 02:28:55,393 LYMPHATICS ARE VERY LOW RVUs, 3788 02:28:55,459 --> 02:28:57,862 AND SO THERE'S ESSENTIALLY NO 3789 02:28:57,928 --> 02:28:59,830 INCENTIVES FOR PRIVATE PRACTICE 3790 02:28:59,897 --> 02:29:01,132 PHYSICIANS AND OTHER PHYSICIANS 3791 02:29:01,198 --> 02:29:03,234 TO DO THESE PROCEDURES. 3792 02:29:03,301 --> 02:29:05,636 I'M SORRY, GO AHEAD, MAX. 3793 02:29:05,703 --> 02:29:07,705 >> LYMPHATIC SURGERY AS WELL, 3794 02:29:07,772 --> 02:29:08,339 RIGHT? 3795 02:29:08,406 --> 02:29:08,806 >> YES, EXACTLY. 3796 02:29:08,873 --> 02:29:10,107 >> PRETTY MUCH NOT EXPLODING 3797 02:29:10,174 --> 02:29:12,510 BECAUSE IT'S SUCH A COMPLICATED 3798 02:29:12,576 --> 02:29:18,883 SURGERY, REQUIRES SO MUCH 3799 02:29:18,949 --> 02:29:21,819 TRAINING, AND WE GET PUSHBACK 3800 02:29:21,886 --> 02:29:23,721 BECAUSE THEY DON'T WANT US TO DO 3801 02:29:23,788 --> 02:29:26,457 PROCEDURES THAT DON'T MAKE 3802 02:29:26,524 --> 02:29:26,657 MONEY. 3803 02:29:26,724 --> 02:29:31,429 RELATED TO THAT AND EVERYTHING 3804 02:29:31,495 --> 02:29:32,563 IN EDUCATION, ANOTHER MONEY 3805 02:29:32,630 --> 02:29:33,664 ISSUES ISSUE. 3806 02:29:33,731 --> 02:29:43,307 WE WOULD NEVER MAKE PROGRESS 3807 02:29:43,374 --> 02:29:45,276 UNLESS INTERESTED IN STEPPING 3808 02:29:45,343 --> 02:29:52,383 FROM EDUCATION PERSPECTIVE, MOST 3809 02:29:52,450 --> 02:29:54,452 IMPORTANT VENUE, EVERY MEETING 3810 02:29:54,518 --> 02:29:56,887 YOU GO 90% INDUSTRY. 3811 02:29:56,954 --> 02:29:57,988 THIS WOULD NEVER GET IN UNTIL 3812 02:29:58,055 --> 02:30:01,025 THEY HAVE SOMETHING TO SELL. 3813 02:30:01,092 --> 02:30:05,996 AND TO GO BACK TO THAT, UNTIL WE 3814 02:30:06,063 --> 02:30:08,499 FIGURE OUT COMMON LYMPHATIC 3815 02:30:08,566 --> 02:30:10,234 DISEASES WHERE THE INDUSTRY 3816 02:30:10,301 --> 02:30:11,669 STARTED DEVELOPING, OH, 3817 02:30:11,736 --> 02:30:14,638 INTERESTING TO HELP US DEVELOP 3818 02:30:14,705 --> 02:30:15,940 SOME TYPE OF DEVICES, WE'RE NOT 3819 02:30:16,006 --> 02:30:18,242 GOING TO MAKE HUGE PROGRESS 3820 02:30:18,309 --> 02:30:20,644 BECAUSE, AGAIN, IT'S ALL ABOUT 3821 02:30:20,711 --> 02:30:21,412 MONEY UNFORTUNATELY. 3822 02:30:21,479 --> 02:30:23,848 SO THIS IS TIED TOGETHER. 3823 02:30:23,914 --> 02:30:26,917 I WORK WITH, IN MY WORLD, ONLY 3824 02:30:26,984 --> 02:30:28,319 ONE COMPANY, AMAZING SUPPORTER 3825 02:30:28,386 --> 02:30:32,790 OF WHAT WE'RE DOING, PROVIDING 3826 02:30:32,857 --> 02:30:35,526 ENORMOUS AMOUNT OF EDUCATION 3827 02:30:35,593 --> 02:30:37,395 SUPPORT, COURSES, INVITED TALKS, 3828 02:30:37,461 --> 02:30:43,000 SEMINARS THAT WE TALKED ABOUT 3829 02:30:43,067 --> 02:30:46,170 ACTUALLY VIRTUAL REALITY, WE DID 3830 02:30:46,237 --> 02:30:49,673 SIX OR SEVEN MOVIES OF VIRTUAL 3831 02:30:49,740 --> 02:30:51,842 REALITY, THE ACTOR IS 3832 02:30:51,909 --> 02:30:54,779 UNBELIEVABLE, YOU CAN STAND NEXT 3833 02:30:54,845 --> 02:30:56,814 TO PHYSICALLY, BUT SPONSORED BY 3834 02:30:56,881 --> 02:30:57,114 INDUSTRY. 3835 02:30:57,181 --> 02:31:00,418 NOT JUST THE MONEY. 3836 02:31:00,484 --> 02:31:01,352 IT'S ALSO ORGANIZATION 3837 02:31:01,419 --> 02:31:02,787 MOTIVATION. 3838 02:31:02,853 --> 02:31:07,291 UNFORTUNATELY ONLY WAY TO FIND 3839 02:31:07,358 --> 02:31:09,293 ORGANIZATION IS IN INDUSTRY. 3840 02:31:09,360 --> 02:31:12,062 IT'S ALL TIED TOGETHER WITH BIG 3841 02:31:12,129 --> 02:31:13,030 MONEY. 3842 02:31:13,097 --> 02:31:14,398 THE INDUSTRY IS SUPPOSED TO 3843 02:31:14,465 --> 02:31:17,234 START, WE NEED TO FIND COMMON 3844 02:31:17,301 --> 02:31:19,303 DISEASES, SOLUTIONS FOR THAT. 3845 02:31:19,370 --> 02:31:25,042 INDUSTRY STEP IN AND GET BACK TO 3846 02:31:25,109 --> 02:31:26,677 THE EDUCATION AND DISSEMINATION 3847 02:31:26,744 --> 02:31:28,078 OF KNOWLEDGE BY INSTITUTE. 3848 02:31:28,145 --> 02:31:29,814 >> YEAH, A BIG PORTION AS OTHER 3849 02:31:29,880 --> 02:31:33,617 PEOPLE MENTIONED IS THE DISEASE 3850 02:31:33,684 --> 02:31:34,251 BURDEN. 3851 02:31:34,318 --> 02:31:36,654 LOT OF THESE DISEASES ARE ORPHAN 3852 02:31:36,720 --> 02:31:38,789 DISEASES BUT OTHERS ARE COMMON, 3853 02:31:38,856 --> 02:31:39,990 WE DON'T KNOW HOW COMMON THEY 3854 02:31:40,057 --> 02:31:40,424 ARE. 3855 02:31:40,491 --> 02:31:42,159 WE DON'T UNDERSTAND THE ECONOMIC 3856 02:31:42,226 --> 02:31:44,695 BURDEN OF THIS, THESE DISEASES, 3857 02:31:44,762 --> 02:31:46,263 BECAUSE THEY ARE NOT COVERED BY 3858 02:31:46,330 --> 02:31:48,499 INSURANCE AND SO THEY ARE 3859 02:31:48,566 --> 02:31:50,835 COVERED BY PERSONAL COST, SO WE 3860 02:31:50,901 --> 02:31:53,437 DON'T REALLY UNDERSTAND THE 3861 02:31:53,504 --> 02:31:55,105 ECONOMIC IMPACT FOR EXAMPLE OF 3862 02:31:55,172 --> 02:31:57,575 LYMPHEDEMA CARE, TIME LOST FROM 3863 02:31:57,641 --> 02:31:58,809 WORK, GARMENTS, PHYSICAL 3864 02:31:58,876 --> 02:32:00,478 THERAPY, THINGS LIKE THAT. 3865 02:32:00,544 --> 02:32:03,614 THIS IS A BIG PROBLEM BECAUSE IF 3866 02:32:03,681 --> 02:32:05,416 THE INSURANCE COMPANIES AND THE 3867 02:32:05,483 --> 02:32:06,951 DRUG COMPANIES UNDERSTAND THE 3868 02:32:07,017 --> 02:32:09,153 DISEASE BURDEN IS HIGH, THEN 3869 02:32:09,220 --> 02:32:10,254 THEY ARE INTERESTED. 3870 02:32:10,321 --> 02:32:15,259 IT'S THERE'S -- ALSO THERE'S 3871 02:32:15,326 --> 02:32:16,560 GOOD EVIDENCE SO-CALLED ORPHAN 3872 02:32:16,627 --> 02:32:20,531 DISEASES ARE AMENABLE TO 3873 02:32:20,598 --> 02:32:21,165 TREATMENTS, THEN THERE'S 3874 02:32:21,232 --> 02:32:22,900 PATHWAYS THAT COULD BE USED TO 3875 02:32:22,967 --> 02:32:24,568 FUND DRUG TREATMENT AND DRUG 3876 02:32:24,635 --> 02:32:25,536 DEVELOPMENT FOR ORPHAN DISEASES 3877 02:32:25,603 --> 02:32:26,737 SO I THINK UNDERSTANDING THE 3878 02:32:26,804 --> 02:32:29,740 DISEASE BURDEN IS A VERY, VERY 3879 02:32:29,807 --> 02:32:30,674 KEY COMPONENT. 3880 02:32:30,741 --> 02:32:33,878 LOOKING AT WHAT'S OUT THERE, FOR 3881 02:32:33,944 --> 02:32:35,212 TREATMENTS, AND UNDERSTANDING 3882 02:32:35,279 --> 02:32:36,380 WHICH ONES ARE EFFECTIVE, WHICH 3883 02:32:36,447 --> 02:32:38,315 ONES ARE NOT AND LEVEL OF 3884 02:32:38,382 --> 02:32:40,084 EVIDENCE FOR EACH WILL HELP US 3885 02:32:40,150 --> 02:32:42,086 UNDERSTAND HOW WE CAN ENGAGE THE 3886 02:32:42,152 --> 02:32:46,991 THIRD PARTY PAYERS. 3887 02:32:47,057 --> 02:32:53,030 >> IF I COULD TAG ON, IT'S ONLY 3888 02:32:53,097 --> 02:32:55,199 FAIR TO TELL THOSE WHO PRACTICE 3889 02:32:55,266 --> 02:32:56,934 MEDICINE MOST OF THE MAJOR 3890 02:32:57,001 --> 02:33:00,371 GUIDELINES THAT WE USE TO TREAT 3891 02:33:00,437 --> 02:33:01,972 COMMON DISEASES IN HUMAN 3892 02:33:02,039 --> 02:33:05,743 MEDICINE ARE DRIVEN BY TRIALS 3893 02:33:05,809 --> 02:33:07,411 THAT WERE FUNDED BY INDUSTRY, 3894 02:33:07,478 --> 02:33:08,579 NOT THE NIH. 3895 02:33:08,646 --> 02:33:10,214 THE FACT WE RECOMMEND STATINS TO 3896 02:33:10,281 --> 02:33:13,350 TREAT TO A CERTAIN LEVEL OR THE 3897 02:33:13,417 --> 02:33:15,853 FACT THAT WE TREAT HYPERTENSION 3898 02:33:15,920 --> 02:33:18,255 A CERTAIN WAY, CANCER PROTOCOLS 3899 02:33:18,322 --> 02:33:20,291 WERE FOUNDED BY INDUSTRY OF 3900 02:33:20,357 --> 02:33:21,425 INDUSTRY AND WE NEED TO 3901 02:33:21,492 --> 02:33:23,060 KNOWLEDGE AND WE NEED TO ENGAGE 3902 02:33:23,127 --> 02:33:24,995 THEM I THINK AS WILLING PARTNERS 3903 02:33:25,062 --> 02:33:27,965 EARLY IN THE PROCESS BECAUSE 3904 02:33:28,032 --> 02:33:34,438 WE'RE GOING TO NEED THEM IN 3905 02:33:34,505 --> 02:33:37,274 ORDER TO MAKE THIS HAPPEN. 3906 02:33:37,341 --> 02:33:39,243 >> I KEEP HEARING SOME WORK THAT 3907 02:33:39,310 --> 02:33:41,378 NEEDS TO BE DONE GATHERING 3908 02:33:41,445 --> 02:33:42,146 EVIDENCE BY TREATMENT, 3909 02:33:42,212 --> 02:33:46,250 RECOMMENDED THE WAY IT IS, TO 3910 02:33:46,317 --> 02:33:49,920 YOUR POINT A LOT OF CURRENT 3911 02:33:49,987 --> 02:33:50,955 GUIDELINES ARE BASED ON 3912 02:33:51,021 --> 02:33:52,489 RANDOMIZED CONTROLLED TRIALS. 3913 02:33:52,556 --> 02:33:54,792 POTENTIALLY THAT SHOULD BE 3914 02:33:54,858 --> 02:33:55,859 INCLUDED IN SCIENTIFIC ROADMAP, 3915 02:33:55,926 --> 02:33:57,928 AS WELL AS FIGURING OUT HOW TO 3916 02:33:57,995 --> 02:33:59,229 DESIGN TRIALS, FUND THOSE 3917 02:33:59,296 --> 02:34:02,666 TRIALS, I DON'T KNOW HOW YOU 3918 02:34:02,733 --> 02:34:04,702 FUND SURGICAL TRIALS THROUGH 3919 02:34:04,768 --> 02:34:06,437 INDUSTRY, SOMEWHAT MORE 3920 02:34:06,503 --> 02:34:07,504 COMPLICATED SO POTENTIALLY SOME 3921 02:34:07,571 --> 02:34:13,677 TRIALS DO NEED TO HAVE SUPPORT 3922 02:34:13,744 --> 02:34:14,612 FROM FUNDING AGENCIES. 3923 02:34:14,678 --> 02:34:16,947 I SAID THAT AS A STATEMENT, IT'S 3924 02:34:17,014 --> 02:34:18,616 REALLY A QUESTION. 3925 02:34:18,682 --> 02:34:21,251 IS THAT SOMETHING WE SHOULD BE 3926 02:34:21,318 --> 02:34:23,120 INCLUDING AS WE THINK OF A 3927 02:34:23,187 --> 02:34:25,255 ROADMAP AND SORT OF -- 3928 02:34:25,322 --> 02:34:28,926 >> IT'S REALLY COMPLICATED. 3929 02:34:28,993 --> 02:34:31,195 RANDOMIZED CONTROLLED TRIALS 3930 02:34:31,261 --> 02:34:32,963 SOUND AMAZING AND WE SHOULD DO 3931 02:34:33,030 --> 02:34:35,666 THEM BUT IS IT ETHICAL TO DO 3932 02:34:35,733 --> 02:34:36,100 THEM? 3933 02:34:36,166 --> 02:34:39,770 IF THERE'S GOOD LEVEL 2, LEVEL 3 3934 02:34:39,837 --> 02:34:40,671 EVIDENCE, RETROSPECTIVE AND 3935 02:34:40,738 --> 02:34:43,273 PROSPECTIVE STUDIES TO SHOW A 3936 02:34:43,340 --> 02:34:52,182 PROCEDURE WORK FOR LYMPHEDEMA 3937 02:34:52,249 --> 02:34:54,418 PREVENTION IS IT ETHICAL TO 3938 02:34:54,485 --> 02:35:00,724 RANDOMIZE TO NO TREATMENT? 3939 02:35:00,791 --> 02:35:02,126 THERE'S TREATMENTS WITH GOOD 3940 02:35:02,192 --> 02:35:08,499 LEVEL 2 AND 3 EVIDENCE, NOT 1, 3941 02:35:08,565 --> 02:35:10,367 RANDOMIZED CONTROL TRIALS BUT WE 3942 02:35:10,434 --> 02:35:12,970 DON'T THINK IT'S ETHICAL. 3943 02:35:13,037 --> 02:35:15,472 WE DID A TRIAL FOR EXAMPLE 3944 02:35:15,539 --> 02:35:22,379 LOOKING AT SURGERY TO PREVENT 3945 02:35:22,446 --> 02:35:22,980 LYMPHEDEMA BY REPAIRING 3946 02:35:23,047 --> 02:35:30,354 LYMPHATIC TO VEINS AT THE TIME 3947 02:35:30,421 --> 02:35:32,756 OF SURGERY, LYMPHEDEMA BYPASS, 3948 02:35:32,823 --> 02:35:34,625 AND WE WERE CRITICIZED. 3949 02:35:34,692 --> 02:35:37,394 WE KNOW IT'S EFFECTIVE, IS IT 3950 02:35:37,461 --> 02:35:38,595 ETHICAL TO DO RANDOMIZED 3951 02:35:38,662 --> 02:35:41,231 PATIENTS TO CONTROL AND THE 3952 02:35:41,298 --> 02:35:42,633 REALITY WAS THAT THE DATA WAS 3953 02:35:42,700 --> 02:35:44,301 WEAK AND WE WERE ABLE TO JUSTIFY 3954 02:35:44,368 --> 02:35:46,136 THAT BUT FOR SOME OTHER 3955 02:35:46,203 --> 02:35:47,071 PROCEDURES PRETTY WELL 3956 02:35:47,137 --> 02:35:49,873 ESTABLISHED IT'S HARD TO JUSTIFY 3957 02:35:49,940 --> 02:35:50,941 RANDOMIZED CONTROLLED TRIAL. 3958 02:35:51,008 --> 02:35:52,609 >> AS YOU GO THROUGH THOSE 3959 02:35:52,676 --> 02:35:56,013 DISCUSSIONS AND IS THAT PART OF 3960 02:35:56,080 --> 02:35:59,149 HOW -- IS THAT THE STRATEGY FOR 3961 02:35:59,216 --> 02:36:02,219 GETTING CPT CODE APPROVAL IS 3962 02:36:02,286 --> 02:36:02,986 PRESENTING THESE OTHER EVIDENCE 3963 02:36:03,053 --> 02:36:04,521 AND, YOU KNOW, I'M JUST TRYING 3964 02:36:04,588 --> 02:36:07,591 TO UNDERSTAND HOW YOU'RE GOING 3965 02:36:07,658 --> 02:36:09,193 TO ACTUALLY BE EFFECTIVE, NOT 3966 02:36:09,259 --> 02:36:11,195 YOU, BUT THE COMMISSION BE 3967 02:36:11,261 --> 02:36:14,698 EFFECTIVE AT DRIVING THIS 3968 02:36:14,765 --> 02:36:15,265 PROCESS FORWARD. 3969 02:36:15,332 --> 02:36:16,700 >> YEAH, I THINK THAT'S THE 3970 02:36:16,767 --> 02:36:17,668 ISSUE, RIGHT? 3971 02:36:17,735 --> 02:36:19,069 WE DON'T ACTUALLY KNOW WHAT YOU 3972 02:36:19,136 --> 02:36:21,638 NEED TO DO TO PROVE THAT A 3973 02:36:21,705 --> 02:36:22,906 SURGERY WORKS. 3974 02:36:22,973 --> 02:36:27,344 SO, WE HAVE EXCELLENT WAYS TO 3975 02:36:27,411 --> 02:36:29,513 ASSESS DRUG TREATMENTS AND THEY 3976 02:36:29,580 --> 02:36:30,581 ARE VERY WELL 3977 02:36:30,647 --> 02:36:31,248 ELUCIDATED,EVERYONE UNDERSTANDS 3978 02:36:31,315 --> 02:36:32,883 WHAT IT TAKES TO GET A DRUG 3979 02:36:32,950 --> 02:36:36,386 APPROVED. 3980 02:36:36,453 --> 02:36:38,889 TO GET A SURGICAL PROCEDURE 3981 02:36:38,956 --> 02:36:39,990 APPROVED AS NON-EXPERIMENTAL IS 3982 02:36:40,057 --> 02:36:40,357 VERY DIFFICULT. 3983 02:36:40,424 --> 02:36:42,059 AS FAR AS I KNOW THERE'S NO 3984 02:36:42,126 --> 02:36:44,294 GUIDELINES TO DO IT BUT YOU HAVE 3985 02:36:44,361 --> 02:36:45,496 TO ASSEMBLE THE BEST DATA YOU 3986 02:36:45,562 --> 02:36:49,099 HAVE AND HOPE YOU CAN CONVINCE 3987 02:36:49,166 --> 02:36:51,502 CMS THAT YOUR ARGUMENT IS VALID, 3988 02:36:51,568 --> 02:36:55,339 AND THAT THEY ACCEPT THE FACT 3989 02:36:55,405 --> 02:36:58,408 THAT THIS RESEARCH ALTHOUGH NOT 3990 02:36:58,475 --> 02:36:59,710 LEVEL 1 EVIDENCE, NOT RANDOMIZED 3991 02:36:59,777 --> 02:37:01,378 CONTROLLED TRIALS, IS ADEQUATE 3992 02:37:01,445 --> 02:37:03,480 TO MAKE THE SURGERY NOT 3993 02:37:03,547 --> 02:37:03,814 EXPERIMENTAL. 3994 02:37:03,881 --> 02:37:06,984 I HOPE THAT MAKES SENSE. 3995 02:37:09,887 --> 02:37:11,221 >> I'M LISTENING TO WHAT MAX AND 3996 02:37:11,288 --> 02:37:14,825 YOU GUYS ARE SAYING NOW, I 3997 02:37:14,892 --> 02:37:17,361 WONDER WHETHER A GROUP WE'RE 3998 02:37:17,427 --> 02:37:20,564 MISSING HERE IS BIOTECH AS A 3999 02:37:20,631 --> 02:37:20,964 STAKEHOLDER. 4000 02:37:21,031 --> 02:37:26,770 SO MAYBE FOR FUTURE MEETING, 4001 02:37:26,837 --> 02:37:28,305 MAYBE TO INVITE THE HEADS OR 4002 02:37:28,372 --> 02:37:30,641 PEOPLE IN CHARGE OF DEVELOPING 4003 02:37:30,707 --> 02:37:38,182 DRUGS AND TREATMENTS FROM 4004 02:37:38,248 --> 02:37:39,850 GENENTECH, I DON'T KNOW, I KNOW 4005 02:37:39,917 --> 02:37:42,219 AT LEAST PEOPLE INVOLVED IN 4006 02:37:42,286 --> 02:37:45,355 VASCULAR ASPECT OF SOME OF THOSE 4007 02:37:45,422 --> 02:37:48,091 CONDITIONS, REGENERON IN 4008 02:37:48,158 --> 02:37:49,560 PARTICULAR, THEY DID LYMPHATIC 4009 02:37:49,626 --> 02:37:51,862 RESEARCH FOR A LONG TIME. 4010 02:37:51,929 --> 02:37:53,697 I THINK WHAT WE'RE SAYING WE 4011 02:37:53,764 --> 02:37:55,499 SHOULD AT LEAST TRY TO CONVINCE 4012 02:37:55,566 --> 02:37:57,434 THEM THIS FIELD IS WORTH IT TO 4013 02:37:57,501 --> 02:38:01,705 TRY TO INVEST AND HELP US TO 4014 02:38:01,772 --> 02:38:06,109 TEST WHETHER TREATMENT OR DRUGS, 4015 02:38:06,176 --> 02:38:07,110 DEVELOP THOSE DRUGS, SO IT 4016 02:38:07,177 --> 02:38:12,449 SHOULD BE AN EFFORT FOR THE NEXT 4017 02:38:12,516 --> 02:38:13,183 MEETING. 4018 02:38:13,250 --> 02:38:14,685 >> GOING TO SCIENTIFIC 4019 02:38:14,751 --> 02:38:15,919 ADVANCEMENT GROUP, USE THAT AS 4020 02:38:15,986 --> 02:38:18,255 AN OPPORTUNITY TO FIND OUT FROM 4021 02:38:18,322 --> 02:38:20,858 THEM WHAT RESEARCH WOULD BE 4022 02:38:20,924 --> 02:38:21,425 NECESSARY TO DE-RISK THESE 4023 02:38:21,491 --> 02:38:23,861 ENDEAVORS TO MAKE IT A SUITABLE 4024 02:38:23,927 --> 02:38:27,264 INVESTMENT FOR YOU, RIGHT? 4025 02:38:27,331 --> 02:38:30,500 IN MY FIELD, OUR DISEASES, IT'S 4026 02:38:30,567 --> 02:38:31,735 A 30-YEAR PROGRESSIVE DISEASE SO 4027 02:38:31,802 --> 02:38:40,010 WHEN YOU TALK TO GENENTECH ABOUT 4028 02:38:40,077 --> 02:38:40,611 ANTI-ALZHEIMER'S THERAPEUTICS 4029 02:38:40,677 --> 02:38:42,246 THEY WANT TO SEE DATA, RIGHT? 4030 02:38:42,312 --> 02:38:44,748 NOT YOUR STUPID ANIMAL MODEL. 4031 02:38:44,815 --> 02:38:46,617 FOR BIOTECH OR DRUG COMPANY, 4032 02:38:46,683 --> 02:38:48,252 WHAT WOULD DE-RISK THIS FOR THAT 4033 02:38:48,318 --> 02:38:49,786 YOU COULD BRING YOU INTO THE 4034 02:38:49,853 --> 02:38:52,289 ARENA AND IF THERE'S A COUPLE 4035 02:38:52,356 --> 02:38:53,490 COMMON THEMES THAT SHOULD 4036 02:38:53,557 --> 02:38:55,993 PROBABLY BE ON THE SCIENTIFIC 4037 02:38:56,059 --> 02:39:00,797 AGENDA, AS A KEY THING. 4038 02:39:00,864 --> 02:39:04,167 THE SECOND QUESTION THOUGH, FOR 4039 02:39:04,234 --> 02:39:08,138 NON-CLINICIAN, DOES THE V.A. AND 4040 02:39:08,205 --> 02:39:10,140 DHA FOLLOW THE CMS GUIDELINES OR 4041 02:39:10,207 --> 02:39:14,678 DO THEY HAVE THEIR OWN PATHWAY 4042 02:39:14,745 --> 02:39:15,345 FOR THIS? 4043 02:39:15,412 --> 02:39:16,880 >> THE ANSWER TO THE QUESTION, I 4044 02:39:16,947 --> 02:39:17,881 DON'T KNOW. 4045 02:39:17,948 --> 02:39:20,450 ESSENTIALLY ALL THIRD PARTY 4046 02:39:20,517 --> 02:39:21,985 INSURANCE COMPANIES FOLLOW CMS. 4047 02:39:22,052 --> 02:39:25,656 MAX, DO YOU KNOW? 4048 02:39:25,722 --> 02:39:27,658 >> I WAS CHAIR OF THE DEPARTMENT 4049 02:39:27,724 --> 02:39:35,232 FOR SEVERAL YEARS, IT'S EXACTLY 4050 02:39:35,299 --> 02:39:37,401 THE SAME. 4051 02:39:37,467 --> 02:39:40,370 >> TO THE RANDOMIZED CONTROLLED 4052 02:39:40,437 --> 02:39:42,439 TRIAL, ACTUALLY EVERYBODY THINKS 4053 02:39:42,506 --> 02:39:44,174 RANDOMIZED CONTROLLED TRIAL IS 4054 02:39:44,241 --> 02:39:46,810 THE BEST EVIDENCE. 4055 02:39:46,877 --> 02:39:47,744 IT'S ACTUALLY NOT. 4056 02:39:47,811 --> 02:39:52,049 IF YOU HAVE A DISEASE, FATAL 4057 02:39:52,115 --> 02:39:53,050 OUTCOME AND TREATMENT, FOR 4058 02:39:53,116 --> 02:39:54,918 EXAMPLE YOU DON'T NEED TO DO 4059 02:39:54,985 --> 02:39:59,389 RANDOMIZED TRIAL IF YOU JUMP 4060 02:39:59,456 --> 02:40:00,824 FROM HELICOPTER WITHOUT A 4061 02:40:00,891 --> 02:40:04,528 PARACHUTE, YOU DON'T NEED TO DO 4062 02:40:04,594 --> 02:40:05,162 RANDOMIZED CONTROLLED TRIAL IF 4063 02:40:05,228 --> 02:40:06,730 YOU BLEED FROM THE ARTERY SHOULD 4064 02:40:06,797 --> 02:40:09,166 YOU PUT YOUR FINISHING OTHER 4065 02:40:09,232 --> 02:40:11,435 THAT OR NOT? 4066 02:40:11,501 --> 02:40:18,875 I'M PARTIAL TO ALL THE ARTICLES 4067 02:40:18,942 --> 02:40:20,310 FROM MEDICAL JOURNALS, IN 4068 02:40:20,377 --> 02:40:26,416 LYMPHATIC DISEASE LIKE THAT, 4069 02:40:26,483 --> 02:40:30,053 AFTER YOU STOP LEAKING AT SOME 4070 02:40:30,120 --> 02:40:34,191 POINT YOU CANNOT IT 4071 02:40:34,257 --> 02:40:34,658 DO (INDISCERNIBLE). 4072 02:40:34,725 --> 02:40:36,259 THAT'S A HUGE PROBLEM. 4073 02:40:36,326 --> 02:40:38,695 WHEN WE SEND TO GOOD JOURNAL, 4074 02:40:38,762 --> 02:40:40,364 THE FIRST RESPONSE IT'S NOT 4075 02:40:40,430 --> 02:40:41,098 RANDOMIZED CONTROLLED TRIAL, AND 4076 02:40:41,164 --> 02:40:43,734 YOU HAVE TO ACTIVATE YOUR 4077 02:40:43,800 --> 02:40:45,035 CONNECTIONs TO CONVINCE THEM 4078 02:40:45,102 --> 02:40:53,043 TO GO TO REVIEW, RIGHT? 4079 02:40:53,110 --> 02:40:54,378 SO, THE SECOND INDUSTRY, WITHOUT 4080 02:40:54,444 --> 02:41:04,388 INDUSTRY WE'RE NOT GOING TO GO 4081 02:41:04,454 --> 02:41:04,654 ANYWHERE. 4082 02:41:04,721 --> 02:41:05,122 AND (INDISCERNIBLE). 4083 02:41:05,188 --> 02:41:10,794 IF YOU DON'T HAVE MARKET SIZE, 4084 02:41:10,861 --> 02:41:12,462 ORPHAN DISEASE TREATMENTS, FOUR 4085 02:41:12,529 --> 02:41:14,865 MILLION DOLLARS PER INJECTION, 4086 02:41:14,931 --> 02:41:16,900 RIGHT? 4087 02:41:16,967 --> 02:41:20,003 THAT'S MAYBE SOMEWHERE THERE, 4088 02:41:20,070 --> 02:41:20,971 BUT PRIMARILY MARKET SIZE. 4089 02:41:21,038 --> 02:41:23,707 >> I WANT TO MAKE THE POINT. 4090 02:41:23,774 --> 02:41:26,476 OUR INDUSTRY SECTOR IS THREE 4091 02:41:26,543 --> 02:41:27,344 SUBGROUPS, THERE'S THE 4092 02:41:27,411 --> 02:41:28,678 PHARMACEUTICAL ONE, OF COURSE, 4093 02:41:28,745 --> 02:41:32,416 THAT'S EASILY IDENTIFIED. 4094 02:41:32,482 --> 02:41:34,918 THERE'S A GROUP OF TECHNOLOGY 4095 02:41:34,985 --> 02:41:35,952 COMPANIES INTERESTED IN 4096 02:41:36,019 --> 02:41:40,090 DIAGNOSTICS OF VARIOUS SORTS. 4097 02:41:40,157 --> 02:41:42,092 THAT'S ONE AVENUE, BIOMARKERS, 4098 02:41:42,159 --> 02:41:43,393 OTHER DISEASE DETECTION DEVICES 4099 02:41:43,460 --> 02:41:45,228 THAT MAY OR MAY NOT BE UNDER 4100 02:41:45,295 --> 02:41:45,896 INVESTIGATION. 4101 02:41:45,962 --> 02:41:47,397 AND THE THIRD ARE DEVICES THAT 4102 02:41:47,464 --> 02:41:53,904 COULD BE USED THERAPEUTICALLY, 4103 02:41:53,970 --> 02:41:54,971 PARA SURGICALLY OR LOGICAL 4104 02:41:55,038 --> 02:41:55,439 INTERVENTION. 4105 02:41:55,505 --> 02:41:57,407 WE OUGHT TO TRY TO CAPTURE 4106 02:41:57,474 --> 02:42:01,311 INPUTS FROM ALL THESE PIPELINES 4107 02:42:01,378 --> 02:42:04,481 SO WE UNDERSTAND WHAT'S USABLE. 4108 02:42:04,548 --> 02:42:06,583 >> I LIKE THAT IDEA. 4109 02:42:06,650 --> 02:42:08,185 >> SORRY, I WAS GOING TO SAY 4110 02:42:08,251 --> 02:42:11,922 HAVING SOMEONE FROM THE CMS ON 4111 02:42:11,988 --> 02:42:12,823 THIS COMMISSION WOULD BE 4112 02:42:12,889 --> 02:42:13,190 HELPFUL. 4113 02:42:13,256 --> 02:42:13,857 SORRY TO INTERRUPT. 4114 02:42:13,924 --> 02:42:15,859 GO AHEAD. 4115 02:42:15,926 --> 02:42:16,726 >> I LIKE THIS DISCUSSION, WE 4116 02:42:16,793 --> 02:42:18,128 WERE TALKING BEFORE THE BREAK 4117 02:42:18,195 --> 02:42:20,997 ABOUT ENTITIES AND HOW AND WHEN 4118 02:42:21,064 --> 02:42:23,633 TO START TO ENGAGE THEM. 4119 02:42:23,700 --> 02:42:26,369 A COUPLE OF US HAVE BEEN PART OF 4120 02:42:26,436 --> 02:42:27,904 THEM, AWARE OF INDUSTRY TRIALS 4121 02:42:27,971 --> 02:42:30,173 THAT FAILED AND MAYBE WE SHOULD 4122 02:42:30,240 --> 02:42:31,441 DISCUSS OTHER FAILURES. 4123 02:42:31,508 --> 02:42:36,980 COMING TO MIND IN LYMPHATICS FOR 4124 02:42:37,047 --> 02:42:39,816 FAILURE ARE DIVERSITY AND 4125 02:42:39,883 --> 02:42:41,585 UNCLEAR STATEMENTS FOR OUTCOME 4126 02:42:41,651 --> 02:42:43,520 MEASURES AND WHAT CLEAR 4127 02:42:43,587 --> 02:42:45,155 DIAGNOSTICS ARE, SOME OF THIS 4128 02:42:45,222 --> 02:42:47,057 WHICH I KNOW MANY OF US, IT'S 4129 02:42:47,124 --> 02:42:48,792 OUR AGENDA BEFORE WE LEAVE, TO 4130 02:42:48,859 --> 02:42:51,094 HAVE A CLEAR DEFINITION OF WHEN 4131 02:42:51,161 --> 02:42:51,962 WE'RE TALKING ABOUT LYMPHATICS 4132 02:42:52,028 --> 02:42:57,434 AND THE SCOPE WE'RE WORKING 4133 02:42:57,501 --> 02:43:02,239 WITH, LYMPHATICKICS, LIKE 4134 02:43:02,305 --> 02:43:04,074 GUILLERMO DO YOU KNOW WHY THEY 4135 02:43:04,141 --> 02:43:08,812 ENDED UP FALLING OUT OF THEIR 4136 02:43:08,879 --> 02:43:11,014 SPECIFIC INTEREST WITH 4137 02:43:11,081 --> 02:43:11,681 LYMPHATICS? 4138 02:43:11,748 --> 02:43:12,282 >> REGENERON, THEY STARTED 4139 02:43:12,349 --> 02:43:14,084 EARLY, SOME OF THE FIRST THAT 4140 02:43:14,151 --> 02:43:16,953 REPORTED ANIMAL MODELS WITH 4141 02:43:17,020 --> 02:43:21,558 LYMPHATIC DISEASES. 4142 02:43:21,625 --> 02:43:22,626 LYMPHATIC MALFORMATIONS AND 4143 02:43:22,692 --> 02:43:23,093 DEFECTS. 4144 02:43:23,160 --> 02:43:24,628 THEY STAYED FOR A WHILE 4145 02:43:24,694 --> 02:43:25,595 INTERESTED ON THAT BUT I THINK 4146 02:43:25,662 --> 02:43:27,230 IT WAS PART OF SAME. 4147 02:43:27,297 --> 02:43:30,901 THEY SAW THE FIELD WAS MOVING 4148 02:43:30,967 --> 02:43:31,234 SLOWLY. 4149 02:43:31,301 --> 02:43:36,006 AT THAT TIME STILL IT WAS MOSTLY 4150 02:43:36,072 --> 02:43:40,477 TYPICAL LYMPHATIC DISEASES, THE 4151 02:43:40,544 --> 02:43:42,245 MARKET WAS SMALL AS MARK WAS 4152 02:43:42,312 --> 02:43:42,512 SAYING. 4153 02:43:42,579 --> 02:43:44,948 FOR THEM IT'S ALL ABOUT TIMING, 4154 02:43:45,015 --> 02:43:48,385 MONEY, HOW SOON I CAN GET A 4155 02:43:48,451 --> 02:43:50,420 PROFIT AND HOW LARGE WOULD BE 4156 02:43:50,487 --> 02:43:50,987 THE PROFIT. 4157 02:43:51,054 --> 02:43:55,592 AND I THINK NOW WE HAVE AN 4158 02:43:55,659 --> 02:43:56,793 OPPORTUNITY TO CONVINCE THEM 4159 02:43:56,860 --> 02:44:00,630 THAT THIS IS THE POSSIBILITIES 4160 02:44:00,697 --> 02:44:04,234 ARE MUCH LARGER BECAUSE THE 4161 02:44:04,301 --> 02:44:05,769 AFFECTED INDIVIDUALS MAY BE 4162 02:44:05,835 --> 02:44:11,374 PURPORTED NOT ONLY GROUP AS 4163 02:44:11,441 --> 02:44:12,309 WE'RE SAYING TYPICAL LYMPHEDEMA 4164 02:44:12,375 --> 02:44:14,511 PATIENT BUT A BROADER COMMUNITY 4165 02:44:14,578 --> 02:44:18,014 AFFECTED BY MALFUNCTION AND THAT 4166 02:44:18,081 --> 02:44:19,649 COULD OR SELLING. 4167 02:44:19,716 --> 02:44:23,119 >> YEAH, BRAIN FIELD, ON 4168 02:44:23,186 --> 02:44:24,688 COMPANIES LIKE SHIRE, DENALI, 4169 02:44:24,754 --> 02:44:26,656 THEIR ULTIMATE GOAL IS 4170 02:44:26,723 --> 02:44:30,260 ALZHEIMER'S AND PARKINSON'S, THE 4171 02:44:30,327 --> 02:44:31,728 HUGE EXPENSIVE LONG-TERM 4172 02:44:31,795 --> 02:44:32,362 DISEASES, ALSO IMPOSSIBLE HILLS 4173 02:44:32,429 --> 02:44:34,030 TO CLIMB OVER. 4174 02:44:34,097 --> 02:44:41,905 THEY ARE LIVING IN THE LYSOSOMAL 4175 02:44:41,972 --> 02:44:43,039 STORAGE PLACES, IF THEY HAVE 4176 02:44:43,106 --> 02:44:44,908 SOLVE THE BLOOD-BRAIN BARRIER 4177 02:44:44,975 --> 02:44:46,776 PENETRATION ISSUE THEY WIN IN 4178 02:44:46,843 --> 02:44:48,545 THAT TINY SPACE. 4179 02:44:48,612 --> 02:44:50,180 NOW, THAT'S A TINY, TINY, TINY 4180 02:44:50,247 --> 02:44:52,849 MARKET BUT IF THEY CAN BE 4181 02:44:52,916 --> 02:44:55,885 SUCCESSFUL THERE THEY SOLVE THE 4182 02:44:55,952 --> 02:44:56,820 BLOOD-BRAIN BARRIER PERMEABILITY 4183 02:44:56,886 --> 02:44:58,989 ISSUE AND CAN MOVE INTO THE 4184 02:44:59,055 --> 02:44:59,956 LARGER THING. 4185 02:45:00,023 --> 02:45:01,891 I WONDER IF THERE'S COUPLING IN 4186 02:45:01,958 --> 02:45:04,561 THIS CONVERSATION YOU CAN DO 4187 02:45:04,628 --> 02:45:05,428 BETWEEN PRIMARY LYMPHATIC 4188 02:45:05,495 --> 02:45:07,163 DISORDERS, WHERE IF YOU CAN SHOW 4189 02:45:07,230 --> 02:45:10,367 EFFICACY HERE IN THESE SMALLER 4190 02:45:10,433 --> 02:45:13,703 POPULATIONS DOWN THE ROAD THERE 4191 02:45:13,770 --> 02:45:16,640 IS A CONNECTION TO OTHER PEOPLE 4192 02:45:16,706 --> 02:45:17,974 WHERE THE MARKET IS MUCH LARGER, 4193 02:45:18,041 --> 02:45:20,677 MIGHT BE HARDER TO GET THERE 4194 02:45:20,744 --> 02:45:22,679 BECAUSE IT'S MORE DIFFUSE DID 4195 02:45:22,746 --> 02:45:25,448 YOU YOU CAN DEMONSTRATE EFFICACY 4196 02:45:25,515 --> 02:45:27,917 IN SMALLER SITUATIONS IS THERE A 4197 02:45:27,984 --> 02:45:28,385 MESSAGE? 4198 02:45:28,451 --> 02:45:28,885 >> CAN I COMMENT? 4199 02:45:28,952 --> 02:45:31,521 I SAID THIS A MILLION TIMES BUT 4200 02:45:31,588 --> 02:45:33,056 THE PROBLEM WITH LYMPHATICS, 4201 02:45:33,123 --> 02:45:35,158 THEY ARE SILENT. 4202 02:45:35,225 --> 02:45:36,326 WE CAN'T MEASURE LYMPHATIC 4203 02:45:36,393 --> 02:45:39,162 FUNCTION CLINICALLY AND SHOW 4204 02:45:39,229 --> 02:45:40,930 SOMEONE GOT BETTER, YOU KNOW, 4205 02:45:40,997 --> 02:45:42,565 WITH MEASURABLE NUMBERS THAT 4206 02:45:42,632 --> 02:45:45,435 REFLECT LYMPHATIC FUNCTION SO 4207 02:45:45,502 --> 02:45:50,774 WHEN I DO A LYMPHEDEMA SURGERY 4208 02:45:50,840 --> 02:45:54,177 WE MEASURE ARM CIRCUMFERENCE, 4209 02:45:54,244 --> 02:45:55,712 SECONDARY MEASURES. 4210 02:45:55,779 --> 02:45:57,480 CMS AND OTHER ENTITIES DON'T 4211 02:45:57,547 --> 02:45:58,682 REALLY ACCEPT THAT. 4212 02:45:58,748 --> 02:46:01,217 IF YOU HAVE A BLOOD PRESSURE 4213 02:46:01,284 --> 02:46:02,385 DRUG, YOU MEASURE BLOOD 4214 02:46:02,452 --> 02:46:02,852 PRESSURE. 4215 02:46:02,919 --> 02:46:04,587 YOU DON'T GO AND ASK THE PATIENT 4216 02:46:04,654 --> 02:46:05,655 IF THEY HAVE HEADACHES ANYMORE 4217 02:46:05,722 --> 02:46:10,160 BECAUSE THAT MAY BE SECONDARY TO 4218 02:46:10,226 --> 02:46:12,329 THE BLOOD PRESSURE. 4219 02:46:12,395 --> 02:46:14,030 THIS TECHNOLOGICAL ISSUE IS A 4220 02:46:14,097 --> 02:46:16,266 PROBLEM THAT AFFECTS ALL OF US. 4221 02:46:16,333 --> 02:46:18,034 FOR A DRUG COMPANY TO BE HAVE 4222 02:46:18,101 --> 02:46:19,135 HAD IN DEVELOPING LYMPHATIC 4223 02:46:19,202 --> 02:46:20,303 TREATMENTS FOR EXAMPLE TO TREAT 4224 02:46:20,370 --> 02:46:21,538 ALZHEIMER'S, YOU NEED TO BE ABLE 4225 02:46:21,604 --> 02:46:24,808 TO SHOW WHATEVER TREATMENT YOU 4226 02:46:24,874 --> 02:46:26,509 DID INCLUDED LYMPHATICS. 4227 02:46:26,576 --> 02:46:34,484 CURRENTLY WE DON'T HAVE THAT 4228 02:46:34,551 --> 02:46:35,318 ABILITY NON-INVASIVELY OR 4229 02:46:35,385 --> 02:46:36,152 MINIMALLY INVASIBLE. 4230 02:46:36,219 --> 02:46:38,288 IT'S A HUGE PROBLEM. 4231 02:46:38,355 --> 02:46:40,623 >> I AGREE WITH THE SENTIMENT. 4232 02:46:40,690 --> 02:46:41,891 THE ARPA-H INVESTMENT, IT IS 4233 02:46:41,958 --> 02:46:44,627 SOMETHING WE NEED TO BE TALKING 4234 02:46:44,694 --> 02:46:44,994 ABOUT. 4235 02:46:45,061 --> 02:46:47,130 I GUESS WHEN PEOPLE , THE 4236 02:46:47,197 --> 02:46:48,365 LYMPHATIC COMMUNITY BEING SMALL 4237 02:46:48,431 --> 02:46:50,600 OR NOT A BIG ENOUGH MARKET, I 4238 02:46:50,667 --> 02:46:54,037 PUSH BACK ON THAT. 4239 02:46:54,104 --> 02:46:55,538 THE NUMBERS, THEY SEEM LIKE 4240 02:46:55,605 --> 02:46:57,807 THERE'S A LOT, MILLIONS. 4241 02:46:57,874 --> 02:46:59,843 ALS HAS GOTTEN A LOT OF 4242 02:46:59,909 --> 02:47:01,478 ATTENTION RECENTLY WITH FAILED 4243 02:47:01,544 --> 02:47:02,545 DRUG TRIALS AND THAT'S 20,000 4244 02:47:02,612 --> 02:47:04,881 PATIENTS, NOT THAT IT'S A SMALL 4245 02:47:04,948 --> 02:47:06,316 NUMBER BUT A BIG ENOUGH MARKET 4246 02:47:06,383 --> 02:47:07,751 FOR INDUSTRY TO BE INTERESTED 4247 02:47:07,817 --> 02:47:07,951 IN. 4248 02:47:08,017 --> 02:47:09,953 SO I THINK WE ACTUALLY -- IT'S 4249 02:47:10,019 --> 02:47:13,857 NOT A SMALL MARKET ISSUE. 4250 02:47:13,923 --> 02:47:15,258 WE DON'T HAVE ANY, YOU KNOW, 4251 02:47:15,325 --> 02:47:16,393 TARGETS RIGHT NOW. 4252 02:47:16,459 --> 02:47:17,460 THERE'S NOT ANY OPPORTUNITIES 4253 02:47:17,527 --> 02:47:25,802 FOR THEM TO INVEST. 4254 02:47:25,869 --> 02:47:27,771 WE NEED TO CONVINCE BUT BUT WE 4255 02:47:27,837 --> 02:47:29,205 NEED THE RIGHT OPPORTUNITIES. 4256 02:47:29,272 --> 02:47:30,940 THERE ARE CLINICAL TRIALS GOING 4257 02:47:31,007 --> 02:47:32,041 OUT THAT HOPEFULLY BREAK THAT 4258 02:47:32,108 --> 02:47:33,676 BARRIER FOR US. 4259 02:47:33,743 --> 02:47:34,911 >> AND THE LAST QUESTION. 4260 02:47:34,978 --> 02:47:36,946 >> I WAS GOING TO SEE OF SAY 4261 02:47:37,013 --> 02:47:39,916 WHAT IF WE SHOW FOR EXAMPLE THAT 4262 02:47:39,983 --> 02:47:41,651 PATIENTS WITH DIABETES HAVE 4263 02:47:41,718 --> 02:47:42,952 IMPAIRED LYMPHATIC FUNCTION AND 4264 02:47:43,019 --> 02:47:49,592 IMPROVING THAT LIMB -- 4265 02:47:49,659 --> 02:47:54,030 LYMPHATIC CAN HELP DID I BEATS, 4266 02:47:54,097 --> 02:47:56,332 COMPANIES WILL BE FALLING OVER 4267 02:47:56,399 --> 02:47:57,734 TO OVER. 4268 02:47:57,801 --> 02:47:59,169 THAT'S WHY COMPANIES ARE NOT 4269 02:47:59,235 --> 02:48:00,270 INTERESTED. 4270 02:48:00,336 --> 02:48:03,106 >> HERE IS ONE APPROACH. 4271 02:48:03,173 --> 02:48:04,874 SOMETHING I'M DOING, FINISHING 4272 02:48:04,941 --> 02:48:07,911 AN OBSERVATIONAL STUDY AS 4273 02:48:07,977 --> 02:48:10,246 COMPARATIVE TO RANDOMIZED TRIAL. 4274 02:48:10,313 --> 02:48:13,616 WE'RE JUST OBSERVING WITH 4275 02:48:13,683 --> 02:48:16,119 IMAGING, GATHERING BLOOD, 4276 02:48:16,186 --> 02:48:17,120 LOOKING AT PLASMA BIOMARKERS 4277 02:48:17,187 --> 02:48:19,722 ALONG THE WAY AND COULD PROPOSE 4278 02:48:19,789 --> 02:48:24,794 MORE OBSERVATIONAL STUDIES 4279 02:48:24,861 --> 02:48:26,062 COLLECTING SAMPLES FOR MAYBE 4280 02:48:26,129 --> 02:48:28,364 FUTURE TESTING BUT IT'S ONE WAY 4281 02:48:28,431 --> 02:48:29,699 TO PROVIDE SOME EVIDENCE, YES, 4282 02:48:29,766 --> 02:48:32,101 HERE ARE IMAGES BEFORE THE 4283 02:48:32,168 --> 02:48:33,636 SURGERY AND AFTERWARD, LOOK HOW 4284 02:48:33,703 --> 02:48:37,407 THEY ARE DIFFERENT, AND HERE ARE 4285 02:48:37,474 --> 02:48:39,309 SOME BIOMARKERS FROM BEFORE AND 4286 02:48:39,375 --> 02:48:40,844 AFTER AND COMPARE THEM. 4287 02:48:40,910 --> 02:48:43,913 IT'S NOT AS PERFECT AS A 4288 02:48:43,980 --> 02:48:45,315 RANDOMIZED TRIAL BUT IT'S 4289 02:48:45,381 --> 02:48:49,252 SOMETHING AND MIGHT BE 4290 02:48:49,319 --> 02:48:51,020 CONVINCING TO THE INSURERS AND 4291 02:48:51,087 --> 02:48:52,021 OTHER PEOPLE. 4292 02:48:52,088 --> 02:48:54,057 >> THE LAST DISCUSSION IS A 4293 02:48:54,123 --> 02:48:55,592 FANTASTIC SEGUE TO THE LAST 4294 02:48:55,658 --> 02:48:58,895 COMMITTEE REPORT WHICH IS 4295 02:48:58,962 --> 02:49:00,430 MEASURE OF POLAR RESULTS 4296 02:49:00,497 --> 02:49:02,732 COMMITTEE. 4297 02:49:02,799 --> 02:49:06,069 WE'VE EATEN INTO YOUR TIME BUT 4298 02:49:06,135 --> 02:49:16,646 THANK YOU, MELISSA, FOR TAKING 4299 02:49:28,591 --> 02:49:29,425 THE PODIUM. 4300 02:49:29,492 --> 02:49:37,066 >> I WAS IN A CHECK OUTLINE, THE 4301 02:49:37,133 --> 02:49:41,771 CASHIER, THERE WAS NO CHECK ON 4302 02:49:41,838 --> 02:49:42,772 THE STATUS. 4303 02:49:42,839 --> 02:49:44,741 I WILL QUOTE ANOTHER BOOK 4304 02:49:44,807 --> 02:49:47,577 WRITTEN BY A NEIGHBOR, A 4305 02:49:47,644 --> 02:49:49,579 PSYCHOLOGIST, IF YOU CAN'T PUT A 4306 02:49:49,646 --> 02:49:51,814 NUMBER ON SOMETHING IN RESEARCH, 4307 02:49:51,881 --> 02:49:53,516 IT DOES NOT EXIST. 4308 02:49:53,583 --> 02:49:55,451 SO, WE WANT TO EXIST. 4309 02:49:55,518 --> 02:50:06,062 WE WANT PEOPLE TO KNOW WE EXIST. 4310 02:50:08,665 --> 02:50:10,733 WE ENVISION A FUTURE IN 4311 02:50:10,800 --> 02:50:12,135 QUANTIFIABLE FORM AND CAN 4312 02:50:12,201 --> 02:50:14,037 MEASURE HOW THINGS MIGHT BE 4313 02:50:14,103 --> 02:50:17,373 IMPROVING WITH OUR EFFORTS AS A 4314 02:50:17,440 --> 02:50:21,210 COMMISSION, AND ALSO INVITE 4315 02:50:21,277 --> 02:50:23,379 COLLABORATORS, INVESTMENT, AND 4316 02:50:23,446 --> 02:50:26,449 ULTIMATELY GAUGE OUR SUCCESS 4317 02:50:26,516 --> 02:50:28,685 QUANTITATIVELY. 4318 02:50:28,751 --> 02:50:30,420 NEXT SLIDE PLEASE. 4319 02:50:30,486 --> 02:50:31,721 A COUPLE SLIDES ON WHY. 4320 02:50:31,788 --> 02:50:35,658 WE WANT TO HELP OTHER GROUPS, 4321 02:50:35,725 --> 02:50:37,093 THERE AREN'T ANY GUIDES. 4322 02:50:37,160 --> 02:50:40,096 WE WANT TO COME UP WITH SOME 4323 02:50:40,163 --> 02:50:43,399 WAYS TO MEASURE WHAT YOU'RE 4324 02:50:43,466 --> 02:50:43,733 DOING. 4325 02:50:43,800 --> 02:50:44,968 IT'S REALLY IMPORTANT BECAUSE 4326 02:50:45,034 --> 02:50:46,402 THROWING MONEY MAY NOT IMPROVE 4327 02:50:46,469 --> 02:50:49,272 PATIENT CARE, WHICH IS THE 4328 02:50:49,339 --> 02:50:52,208 BOTTOM LINE. 4329 02:50:52,275 --> 02:50:56,145 AND WE ARE TRYING TO SET UP 4330 02:50:56,212 --> 02:50:56,846 QUANTITATIVE ACCOUNTABILITY 4331 02:50:56,913 --> 02:51:01,584 SYSTEM TO VALIDATE IN A TIMELY 4332 02:51:01,651 --> 02:51:10,159 GOAL-MEETING MANNER. 4333 02:51:10,226 --> 02:51:10,860 NEXT SLIDE. 4334 02:51:10,927 --> 02:51:15,698 SO, WE WANT TO COME UP WITH A 4335 02:51:15,765 --> 02:51:16,733 WORKING ALGORITHM OR ALGORITHM 4336 02:51:16,799 --> 02:51:17,667 OR INFRASTRUCTURE THAT WILL 4337 02:51:17,734 --> 02:51:21,871 SERVE THE OTHER GROUPS AND OTHER 4338 02:51:21,938 --> 02:51:24,540 PEOPLE IN THE DISEASE COMMUNITY 4339 02:51:24,607 --> 02:51:27,110 EVEN AFTER OUR WORK IS DONE AS A 4340 02:51:27,176 --> 02:51:29,812 COMMISSION, WE WANT TO SHOW THAT 4341 02:51:29,879 --> 02:51:34,751 FIRST OF ALL WE KNOW WHAT THE 4342 02:51:34,817 --> 02:51:37,020 LYMPHATIC SYSTEM IS DOING. 4343 02:51:37,086 --> 02:51:41,958 WHAT OTHER DISEASES ARE WE GOING 4344 02:51:42,025 --> 02:51:44,727 TO TRY AND MEASURE LYMPHATICS IN 4345 02:51:44,794 --> 02:51:48,431 AND WE'LL ACHIEVE THAT GOAL WHEN 4346 02:51:48,498 --> 02:51:52,602 WE'VE MET SHORT-TERM AND 4347 02:51:52,669 --> 02:51:54,971 LONG-TERM GOALS, ESPECIALLY WORK 4348 02:51:55,038 --> 02:52:00,243 TO PUT THAT IN CONCRETE TERMS. 4349 02:52:00,309 --> 02:52:03,846 AND PAULA MENTIONED THIS IS 4350 02:52:03,913 --> 02:52:05,915 SOMETHING CAUGHT IN MBA SCHOOL 4351 02:52:05,982 --> 02:52:12,288 AS A WAY TO -- IT'S A RUBRIC, OR 4352 02:52:12,355 --> 02:52:13,122 ACTUALLY STEP ON IT 4353 02:52:13,189 --> 02:52:14,657 WHAT IS THIS? 4354 02:52:14,724 --> 02:52:16,859 YOU GUIDE YOUR THINKING PROCESS 4355 02:52:16,926 --> 02:52:19,028 INTO LIKE BREAKING DOWN THE TASK 4356 02:52:19,095 --> 02:52:22,432 INTO STEPS AND EVALUATE YOUR 4357 02:52:22,498 --> 02:52:25,702 OUTCOMES, IMPROVE IT, TEST IT 4358 02:52:25,768 --> 02:52:26,135 AGAIN. 4359 02:52:26,202 --> 02:52:27,870 WE WANT TO DEVICE SOMETHING LIKE 4360 02:52:27,937 --> 02:52:30,640 THAT, THAT COULD WORK FOR THE 4361 02:52:30,707 --> 02:52:31,074 OTHERS. 4362 02:52:31,140 --> 02:52:34,277 NEXT SLIDE PLEASE. 4363 02:52:34,343 --> 02:52:37,246 SO, WE WANT TO LOOK AT OUR 4364 02:52:37,313 --> 02:52:40,249 LEARNING PLANS, WE WANT TO 4365 02:52:40,316 --> 02:52:43,986 REALLY UNDERSTAND INDIVIDUAL 4366 02:52:44,053 --> 02:52:49,225 GOALS OF EACH OTHER 4367 02:52:49,292 --> 02:52:49,859 SUBCOMMITTEES, WE'RE JUST 4368 02:52:49,926 --> 02:52:51,294 BASICALLY A SERVICE COMMITTEE TO 4369 02:52:51,360 --> 02:52:52,061 OTHER COMMITTEES. 4370 02:52:52,128 --> 02:52:53,529 WE WANT TO HAVE VERY GOOD 4371 02:52:53,596 --> 02:52:55,832 UNDERSTANDING OF FIRST OF ALL 4372 02:52:55,898 --> 02:52:59,736 LYMPHATIC DISEASES AND COME TO 4373 02:52:59,802 --> 02:53:01,370 CONSENSUS ON MEASURING LYMPHATIC 4374 02:53:01,437 --> 02:53:03,773 FUNCTION AND ALSO HOW TO 4375 02:53:03,840 --> 02:53:05,408 IDENTIFY PATIENTS AND ASSESS 4376 02:53:05,475 --> 02:53:05,875 THEIR FUNCTION. 4377 02:53:05,942 --> 02:53:13,149 WE NEED TO SET UP OUR INCHES AND 4378 02:53:13,216 --> 02:53:14,951 FEET, UNITS OF MEASUREMENT, AND 4379 02:53:15,017 --> 02:53:17,987 LOOK AT OTHER RELEVANT SYSTEMS 4380 02:53:18,054 --> 02:53:19,122 OF MEASURING AND REPORTING 4381 02:53:19,188 --> 02:53:20,323 RESULTS, MAY COME FROM THE 4382 02:53:20,389 --> 02:53:27,997 BUSINESS FIELD, MAY COME FROM 4383 02:53:28,064 --> 02:53:28,798 MARKETING COMMUNITIES, TO 4384 02:53:28,865 --> 02:53:32,568 SOMEHOW THE MECHANICS OF 4385 02:53:32,635 --> 02:53:33,436 RECORDING INFRASTRUCTURE HELD 4386 02:53:33,503 --> 02:53:38,474 ACCOUNTABLE AND WE CAN MEASURE 4387 02:53:38,541 --> 02:53:40,743 THAT, MEASURE THAT SUCCESS. 4388 02:53:40,810 --> 02:53:44,580 NEXT SLIDE PLEASE. 4389 02:53:44,647 --> 02:53:44,814 OKAY. 4390 02:53:44,881 --> 02:53:47,750 WE MAY INCLUDE SOME EXPERTISE 4391 02:53:47,817 --> 02:53:50,353 FROM GROUPS OUTSIDE OF OUR 4392 02:53:50,419 --> 02:53:50,720 COMMISSION. 4393 02:53:50,787 --> 02:53:52,655 AND THAT MAY HELP US UNDERSTAND 4394 02:53:52,722 --> 02:53:56,726 HOW OUR SUBGROUPS ARE POSITIONED 4395 02:53:56,793 --> 02:53:59,762 WITHIN THE COMMISSION. 4396 02:53:59,829 --> 02:54:02,498 WE WANT GROUPS THAT ARE ENGAGED 4397 02:54:02,565 --> 02:54:05,902 IN OTHER ENTERPRISES, OTHER 4398 02:54:05,968 --> 02:54:07,870 DISEASES, HOW DO THEY MEASURE 4399 02:54:07,937 --> 02:54:10,239 THINGS, HOW DO WEI THEY DEVICE 4400 02:54:10,306 --> 02:54:13,476 METRICS THAT COULD HELP US TO 4401 02:54:13,543 --> 02:54:17,747 DEVELOP A UNIFORM WAY OF 4402 02:54:17,814 --> 02:54:18,981 MEASURING THINGS. 4403 02:54:19,048 --> 02:54:21,150 AND AGAIN WE KEEP COMING UP WITH 4404 02:54:21,217 --> 02:54:24,654 THE RECURRING THING OF OTHER 4405 02:54:24,720 --> 02:54:25,321 LYMPHATIC FIELDS. 4406 02:54:25,388 --> 02:54:28,057 NEXT SLIDE PLEASE, IF THAT'S 4407 02:54:28,124 --> 02:54:28,257 OKAY. 4408 02:54:28,324 --> 02:54:30,660 WE'VE HAD A LOT OF BARRIERS. 4409 02:54:30,726 --> 02:54:31,794 WE'VE NEVER DONE THIS BEFORE. 4410 02:54:31,861 --> 02:54:33,963 WE HAVE A SMALL COMMITTEE. 4411 02:54:34,030 --> 02:54:38,167 WE'RE NOT SURE WHERE WE WANT TO 4412 02:54:38,234 --> 02:54:40,870 SET BOUNDARIES ON LYMPHATIC 4413 02:54:40,937 --> 02:54:41,404 DISEASES, WE CAN'T COVER 4414 02:54:41,470 --> 02:54:43,039 EVERYTHING IN THE HUMAN BODY. 4415 02:54:43,105 --> 02:54:51,480 WE ALREADY KNOW THERE ARE 4416 02:54:51,547 --> 02:54:56,185 SPECIFIC DISEASES IN THE 4417 02:54:56,252 --> 02:54:57,520 LYMPHEDEMA AREA AND EXPAND UNTIL 4418 02:54:57,587 --> 02:54:58,955 WE ACHIEVE OUR GOALS. 4419 02:54:59,021 --> 02:55:05,294 HERE IS ANOTHER BARRIER. 4420 02:55:05,361 --> 02:55:07,296 SOMETIMES THERE IS NOMENCLATURE 4421 02:55:07,363 --> 02:55:07,630 PROBLEM. 4422 02:55:07,697 --> 02:55:09,999 DATA SHARING IS A BIG ONE. 4423 02:55:10,066 --> 02:55:11,868 WE HAVE RESEARCHERS THAT OPERATE 4424 02:55:11,934 --> 02:55:13,970 IN SILOS AND I WOULD SAY THEY 4425 02:55:14,036 --> 02:55:17,006 ARE COMPETITIVE SILOS. 4426 02:55:17,073 --> 02:55:20,276 WE HAVE TO PROMOTE MORE 4427 02:55:20,343 --> 02:55:22,411 COLLABORATION AMONG STAKEHOLDERS 4428 02:55:22,478 --> 02:55:30,786 AND WE WANT TO OVERCOME THE 4429 02:55:30,853 --> 02:55:32,455 FRAGMENTED PERSPECTIVES OF -- 4430 02:55:32,521 --> 02:55:34,123 CAN WE GO BACK TO THE PREVIOUS 4431 02:55:34,190 --> 02:55:40,196 SLIDE? 4432 02:55:40,263 --> 02:55:42,665 YEAH, FRAGMENTED FUNCTION. 4433 02:55:42,732 --> 02:55:44,600 PEOPLE FOCUS MOSTLY ON THE 4434 02:55:44,667 --> 02:55:46,903 PHYSIOTHERAPY SIDE OF THINGS, 4435 02:55:46,969 --> 02:55:49,839 PEOPLE LOOKING AT IMMUNOLOGY OR 4436 02:55:49,906 --> 02:55:51,173 SURGICAL APPROACHES, AND WE NEED 4437 02:55:51,240 --> 02:55:52,642 TO SOMEHOW DECIDE HOW WE'RE 4438 02:55:52,708 --> 02:55:56,646 GOING TO INTEGRATE ALL OF THOSE 4439 02:55:56,712 --> 02:55:58,581 PERSPECTIVES INTO DEVELOPING 4440 02:55:58,648 --> 02:56:06,222 METRICS WE CAN USE TO MEASURE 4441 02:56:06,289 --> 02:56:07,156 OUTCOMES. 4442 02:56:07,223 --> 02:56:08,824 NEXT SLIDE NOW. 4443 02:56:08,891 --> 02:56:15,364 WE NEED TO LOOK AT COMMUNITIES 4444 02:56:15,431 --> 02:56:18,301 NEED TO MEASURE FIRST, WE NEED 4445 02:56:18,367 --> 02:56:21,904 SUPPORT INPUT FROM OTHERS 4446 02:56:21,971 --> 02:56:24,140 INCLUDING MEDICAL ORGANIZATIONS, 4447 02:56:24,206 --> 02:56:27,977 LAM ORGANIZATIONS, CONFERENCES, 4448 02:56:28,044 --> 02:56:32,648 YOU CAN READ THESE, PATIENTS AND 4449 02:56:32,715 --> 02:56:35,384 CAREGIVERS, INSURANCE PROVIDERS, 4450 02:56:35,451 --> 02:56:37,153 PHARMACEUTICAL COMPANIES, AND WE 4451 02:56:37,219 --> 02:56:38,888 NEED BUY-IN FROM OTHER 4452 02:56:38,955 --> 02:56:40,222 SUBCOMMITTEES, PROBABLY GO 4453 02:56:40,289 --> 02:56:41,190 THROUGH ITERATIVE PROCESS WHERE 4454 02:56:41,257 --> 02:56:42,391 WE ASK SUBCOMMITTEES DO YOU 4455 02:56:42,458 --> 02:56:44,493 THINK THIS WOULD WORK FOR WHAT 4456 02:56:44,560 --> 02:56:46,195 YOU'RE TRYING TO MEASURE, YES OR 4457 02:56:46,262 --> 02:56:48,431 NO, AND GO BACK TO THE DRAWING 4458 02:56:48,497 --> 02:56:53,569 BOARD IF THE ANSWER IS NO. 4459 02:56:53,636 --> 02:56:55,705 NEXT SLIDE PLEASE. 4460 02:56:55,771 --> 02:56:57,073 SO, HERE'S THE PLAN. 4461 02:56:57,139 --> 02:57:02,445 WE WANT TO START WITH SOME 4462 02:57:02,511 --> 02:57:04,413 CHARTS FOR WHAT KIND TO COLLECT 4463 02:57:04,480 --> 02:57:06,282 AND HOW TO MEASURE AND HOW WE'RE 4464 02:57:06,349 --> 02:57:09,085 GOING TO TRACK THE PROGRESS. 4465 02:57:09,151 --> 02:57:12,655 AND THEN I THINK LIKE AN EXAMPLE 4466 02:57:12,722 --> 02:57:15,791 WOULD BE WHAT INCREASE IN 4467 02:57:15,858 --> 02:57:20,162 LYMPHATIC DISEASE AWARENESS CAN 4468 02:57:20,229 --> 02:57:21,564 WE MEASURE. 4469 02:57:21,630 --> 02:57:23,933 IN THE GENERAL PUBLIC OR WITHIN 4470 02:57:24,000 --> 02:57:26,435 PATIENT POPULATIONS. 4471 02:57:26,502 --> 02:57:30,573 WE WANT TO ASSIGN COMMITTEE 4472 02:57:30,639 --> 02:57:32,341 MEMBERS TO LOOK FOR MEASURES, 4473 02:57:32,408 --> 02:57:36,078 WE'LL HAVE TO GO OUTSIDE OF OUR 4474 02:57:36,145 --> 02:57:39,148 BOX AND LOOK AT RUBRICS AND 4475 02:57:39,215 --> 02:57:43,185 METRICS USED IN OTHER FIELDS 4476 02:57:43,252 --> 02:57:48,124 SUCH AS THE ONE MENTIONED 4477 02:57:48,190 --> 02:57:50,226 EARLIER AND DESCRIBED. 4478 02:57:50,292 --> 02:57:53,529 IT MAY NOT BE APPLICABLE TO ALL 4479 02:57:53,596 --> 02:57:56,198 SUBCOMMITTEES AND MAY HAVE A 4480 02:57:56,265 --> 02:57:57,967 METRIC FOR EACH SUBCOMMITTEE, 4481 02:57:58,034 --> 02:58:00,002 THAT'S OKAY. 4482 02:58:00,069 --> 02:58:03,706 AND DATA ACCESS, THE BIGGEST 4483 02:58:03,773 --> 02:58:09,378 BARRIER IS BASELINE VALUES TRUE 4484 02:58:09,445 --> 02:58:12,314 WHEN SOMEONE IS GOING THROUGH 4485 02:58:12,381 --> 02:58:14,850 CANCER TREATMENT, HAVEN'T GONE 4486 02:58:14,917 --> 02:58:15,584 THROUGH BASELINE MEASURES, WE 4487 02:58:15,651 --> 02:58:18,320 NEED TO START AND SEE IF WE'RE 4488 02:58:18,387 --> 02:58:18,654 SUCCEEDING. 4489 02:58:18,721 --> 02:58:22,391 WE WANT TO LOOK AT SOME WAY TO 4490 02:58:22,458 --> 02:58:23,559 DISSEMINATE OUR RESULTS TO OTHER 4491 02:58:23,626 --> 02:58:26,295 PEOPLE AND MAKE SURE THAT THE 4492 02:58:26,362 --> 02:58:30,232 WAY THAT WE FORMULATE IT TO 4493 02:58:30,299 --> 02:58:37,139 MEASURE THEM WILL EFFECTIVELY 4494 02:58:37,206 --> 02:58:39,508 COMMUNICATE SUCCESS OR FAILURE. 4495 02:58:39,575 --> 02:58:43,379 NEXT SLIDE PLEASE. 4496 02:58:43,446 --> 02:58:45,014 SO, IMMEDIATELY WE'RE GOING 4497 02:58:45,081 --> 02:58:49,885 TO -- NEXT YEAR WE'LL START TO 4498 02:58:49,952 --> 02:58:51,120 LOOK FOR PUTTING TOGETHER 4499 02:58:51,187 --> 02:58:51,921 PRELIMINARY ANNUAL REPORTING 4500 02:58:51,987 --> 02:58:54,523 STRUCTURE FOR ACCOUNTABILITY AND 4501 02:58:54,590 --> 02:58:56,392 TRACKING SO THAT'S BEYOND THE 4502 02:58:56,459 --> 02:58:58,260 SERVICE OF OUR COMMITTEE HERE SO 4503 02:58:58,327 --> 02:59:00,496 ALONG, YOU KNOW, TWO YEARS FROM 4504 02:59:00,563 --> 02:59:03,599 NOW HOW WE TRACK HOW OUR 4505 02:59:03,666 --> 02:59:05,067 PROGRESS IS GOING. 4506 02:59:05,134 --> 02:59:08,204 WE WANT TO HAVE PRELIMINARY 4507 02:59:08,270 --> 02:59:13,442 REPORT READY BY MAY, 2025, 4508 02:59:13,509 --> 02:59:16,779 FORMAL REPORT AFTER THAT, AND WE 4509 02:59:16,846 --> 02:59:18,714 WANT TO PROCESS, CONTINUALLY 4510 02:59:18,781 --> 02:59:20,382 MONITOR WHETHER WE'RE SUCCEEDING 4511 02:59:20,449 --> 02:59:21,550 OR FAILING. 4512 02:59:21,617 --> 02:59:27,623 AND COME UP WITH METHODS TO GET 4513 02:59:27,690 --> 02:59:30,793 OVER BARRIERS. 4514 02:59:30,860 --> 02:59:31,961 NEXT SLIDE PLEASE. 4515 02:59:32,027 --> 02:59:35,030 WE MIGHT WANT TO HAVE AN 4516 02:59:35,097 --> 02:59:35,898 ORGANIZATION THAT'S AN 4517 02:59:35,965 --> 02:59:36,665 ACCOUNTING ORGANIZATION THAT 4518 02:59:36,732 --> 02:59:38,501 TELLS US HOW WE'RE DOING AND NOT 4519 02:59:38,567 --> 02:59:40,069 DOING TOO WELL. 4520 02:59:40,136 --> 02:59:43,772 WE WANT TO MAINTAIN 4521 02:59:43,839 --> 02:59:46,976 CONNECTEDNESS IN THE FIELD AND 4522 02:59:47,042 --> 02:59:48,310 EVEN MEASURE CONNECTEDNESS. 4523 02:59:48,377 --> 02:59:51,013 AND BOTTOM LINE WE WANT TO 4524 02:59:51,080 --> 02:59:53,149 BETTER QUANTITATE HOW PATIENTS 4525 02:59:53,215 --> 02:59:56,385 ARE BEING DIAGNOSED AND TREATED. 4526 02:59:56,452 --> 02:59:58,120 NEXT SLIDE PLEASE. 4527 02:59:58,187 --> 03:00:00,856 AND I WOULD FOCUS HERE ON THE 4528 03:00:00,923 --> 03:00:05,261 JUNE AND SEPTEMBER TOP ROW 4529 03:00:05,327 --> 03:00:06,896 THINGS, WHAT WE'RE AIMING FOR 4530 03:00:06,962 --> 03:00:07,129 NOW. 4531 03:00:07,196 --> 03:00:08,631 WE WANT A PRELIMINARY ANNUAL 4532 03:00:08,697 --> 03:00:09,832 REPORTING STRUCTURE SO WE'RE 4533 03:00:09,899 --> 03:00:12,902 GOING TO TRY TO CRAFT THAT 4534 03:00:12,968 --> 03:00:13,669 STARTING WITH PRELIMINARY 4535 03:00:13,736 --> 03:00:19,909 VERSION AND HOW WE CAN EDIT IT. 4536 03:00:19,975 --> 03:00:23,846 WE WANT AUDITED GOALS TO MEASURE 4537 03:00:23,913 --> 03:00:26,248 HOW WE'RE GOING TO SEE ABOUT 4538 03:00:26,315 --> 03:00:29,018 GAPS AND COME BACK OVER AND OVER 4539 03:00:29,084 --> 03:00:30,186 WITH DEFINITION OF LYMPHATIC 4540 03:00:30,252 --> 03:00:33,789 DISEASE, HOW ARE WE GOING TO 4541 03:00:33,856 --> 03:00:35,124 DETERMINE WHAT WE'RE -- WHAT 4542 03:00:35,191 --> 03:00:39,094 WE'RE GOING TO MEASURE. 4543 03:00:39,161 --> 03:00:41,163 IN SEPTEMBER WE NEED TO HAVE AN 4544 03:00:41,230 --> 03:00:43,232 INTERIM REPORT MEETING FOR OUR 4545 03:00:43,299 --> 03:00:44,867 MEETING THERE. 4546 03:00:44,934 --> 03:00:46,635 HOPEFULLY BY THEN WE'LL HAVE 4547 03:00:46,702 --> 03:00:48,170 CONSENSUS ON WHAT DISEASES WE'RE 4548 03:00:48,237 --> 03:00:52,875 GOING TO INCLUDE IN THE LD FOLD. 4549 03:00:52,942 --> 03:00:55,778 AND THEN WE WANT TO MAP OUT A 4550 03:00:55,844 --> 03:00:57,446 NETWORK, WHO KNOWS WHAT, GET 4551 03:00:57,513 --> 03:01:00,449 SOME INFORMATION FROM THEM. 4552 03:01:00,516 --> 03:01:09,858 AND THE REST IS YEAR TWO. 4553 03:01:09,925 --> 03:01:14,863 WE STARTED WITH A LIST OF SOME 4554 03:01:14,930 --> 03:01:17,233 THINGS TO DO TO DO, PEOPLE TO 4555 03:01:17,299 --> 03:01:18,300 CONTACT TO DO THAT. 4556 03:01:18,367 --> 03:01:20,169 I HOPE I FINISHED IN TIME. 4557 03:01:20,236 --> 03:01:23,239 I RUSHED THROUGH. 4558 03:01:23,305 --> 03:01:25,007 >> THANK YOU FOR DOING THAT. 4559 03:01:25,074 --> 03:01:27,209 THIS IS A GROUP CONNECTED TO 4560 03:01:27,276 --> 03:01:28,077 EVERY OTHER GROUP. 4561 03:01:28,143 --> 03:01:29,845 I HOPE HEARING THE GOALS OF THE 4562 03:01:29,912 --> 03:01:34,550 OTHER COMMITTEES IS HELPFUL FOR 4563 03:01:34,617 --> 03:01:37,019 THE MEASURABLE RESULTS TEAM. 4564 03:01:37,086 --> 03:01:47,029 ANY FEEDBACK QUESTIONS, COMMENTS 4565 03:01:47,096 --> 03:01:47,997 FOR THIS GROUP? 4566 03:01:48,063 --> 03:01:51,634 >> THIS IS GOING TO BE VERY 4567 03:01:51,700 --> 03:01:52,935 DIFFICULT TO MEASURE BECAUSE WE 4568 03:01:53,002 --> 03:01:55,671 STILL YET TO DEFINE IT SO 4569 03:01:55,738 --> 03:01:57,740 BARRIERS ARE HARD. 4570 03:01:57,806 --> 03:02:00,542 I WAS GOING TO ASK AND I DIDN'T 4571 03:02:00,609 --> 03:02:04,413 HEAR MUCH ABOUT THE IDEA THAT 4572 03:02:04,480 --> 03:02:08,450 ALL THE DISEASES ARE NOT 4573 03:02:08,517 --> 03:02:10,919 U.S.-CENTRIC BUT EXIST AROUND 4574 03:02:10,986 --> 03:02:12,187 THE WORLD. 4575 03:02:12,254 --> 03:02:15,457 ONE THING IS NOT ONLY GOING TO 4576 03:02:15,524 --> 03:02:16,859 INVESTIGATE WHAT'S LEARNED FROM 4577 03:02:16,925 --> 03:02:19,194 OTHER DISEASES BUT WHAT CAN WE 4578 03:02:19,261 --> 03:02:20,963 LEARN FROM OTHER COUNTRIES. 4579 03:02:21,030 --> 03:02:23,265 WHILE THE HEALTH CARE SYSTEM MAY 4580 03:02:23,332 --> 03:02:24,967 HAVE ITS PECULIARITIES IN THE 4581 03:02:25,034 --> 03:02:28,671 UNITED STATES, THAT'S PART OF 4582 03:02:28,737 --> 03:02:30,306 THE SOLUTION HOW TO LEARN, BUT 4583 03:02:30,372 --> 03:02:33,275 THERE ARE PHYSICIANS AND I THINK 4584 03:02:33,342 --> 03:02:35,978 WE MET SOME IN THE WORKSHOPS WE 4585 03:02:36,045 --> 03:02:38,847 ORGANIZED FROM SOUTH AMERICA, 4586 03:02:38,914 --> 03:02:39,415 FROM EUROPE, RESEARCHERS, 4587 03:02:39,481 --> 03:02:42,551 THERE'S A LOT GOING ON ACROSS 4588 03:02:42,618 --> 03:02:43,819 THE WORLD. 4589 03:02:43,886 --> 03:02:47,056 AND HOW OTHER COUNTRIES DEAL 4590 03:02:47,122 --> 03:02:50,025 WITH THIS MAY BE INTERESTING OR 4591 03:02:50,092 --> 03:02:51,660 WE GET GOOD INFORMED, YOU KNOW, 4592 03:02:51,727 --> 03:02:54,063 WHAT WE'RE TRYING TO FIGURE OUT. 4593 03:02:54,129 --> 03:02:55,964 IT WOULD ALSO SHOW THE INDUSTRY 4594 03:02:56,031 --> 03:02:58,033 SINCE WE ARE TALKING ABOUT THE 4595 03:02:58,100 --> 03:03:01,103 SIZE OF THE MARKED THAT THE 4596 03:03:01,170 --> 03:03:11,647 MARKET IS PROBLEM ABLE MUCH 4597 03:03:15,050 --> 03:03:16,685 WIDER, A MUCH LARGER MARKET. 4598 03:03:16,752 --> 03:03:18,253 IN DISCUSSION ABOUT THE INDUSTRY 4599 03:03:18,320 --> 03:03:20,055 I WANTED TO SAY THE FIRST THING 4600 03:03:20,122 --> 03:03:21,657 YOU EVER HAVE TO PROVE WHEN 4601 03:03:21,724 --> 03:03:23,325 YOU'RE WORKING IN THE INDUSTRY, 4602 03:03:23,392 --> 03:03:29,865 SOME OF YOU KNOW I WORKED FOR 4603 03:03:29,932 --> 03:03:33,736 YEARS, CHIEF SCIENTIFIC OFFICER 4604 03:03:33,802 --> 03:03:35,070 FOR SCIENTIFIC RESEARCHER FOR A 4605 03:03:35,137 --> 03:03:37,673 LARGE COMPANY, YOU HAVE TO SHOW 4606 03:03:37,740 --> 03:03:39,308 ROI, RETURN ON INVESTMENT. 4607 03:03:39,375 --> 03:03:41,243 THERE'S A FORMULA, HOW BIG IS 4608 03:03:41,310 --> 03:03:42,277 THE MARKET, HOW MUCH IT WILL 4609 03:03:42,344 --> 03:03:44,446 COST US TO GET THERE, HOW LONG 4610 03:03:44,513 --> 03:03:47,349 IT WILL TAKE AND SO FORTH. 4611 03:03:47,416 --> 03:03:48,717 THAT'S A HUGE HURDLE. 4612 03:03:48,784 --> 03:03:53,422 ON THE OTHER HAND, COMING BACK 4613 03:03:53,489 --> 03:03:55,190 TO MY CURRENT POSITION HERE, ONE 4614 03:03:55,257 --> 03:03:59,027 OF THE REASONS I CAME HERE, 4615 03:03:59,094 --> 03:04:02,398 NHLBI WILL HELP YOU DE-RISK YOUR 4616 03:04:02,464 --> 03:04:07,336 IDEAS, IF YOU HAVE GOOD IDEAS 4617 03:04:07,403 --> 03:04:09,738 FOR DIAGNOSTICS OR MEDICATIONS, 4618 03:04:09,805 --> 03:04:10,706 ANYTHING, IT'S MUCH LESS ABOUT A 4619 03:04:10,773 --> 03:04:12,474 QUESTION OF HOW MUCH MONEY ARE 4620 03:04:12,541 --> 03:04:15,244 WE GOING TO MAKE FROM THIS, BUT 4621 03:04:15,310 --> 03:04:17,479 HOW IMPORTANT IS THIS DISEASE, 4622 03:04:17,546 --> 03:04:19,515 HOW CAN WE HELP DE-RISK, SO 4623 03:04:19,581 --> 03:04:21,216 INDUSTRY WILL BE INTERESTED. 4624 03:04:21,283 --> 03:04:22,584 WE STILL HAVE THE QUESTION OF 4625 03:04:22,651 --> 03:04:25,287 THE SIZE OF THE MARKET WHEN IT 4626 03:04:25,354 --> 03:04:27,956 COMES TO INDUSTRY BUT GETTING 4627 03:04:28,023 --> 03:04:31,427 STARTED, ALL GREAT IDEAS, THAT'S 4628 03:04:31,493 --> 03:04:33,929 PART OF I THINK ASKING SHOULD 4629 03:04:33,996 --> 03:04:36,965 THIS BE PART OF THE SCIENTIFIC 4630 03:04:37,032 --> 03:04:39,334 COMMITTEE, WE HAVE ALL KINDS OF 4631 03:04:39,401 --> 03:04:40,536 MECHANISMS, THERE'S EVEN I THINK 4632 03:04:40,602 --> 03:04:43,972 A CALL ON THE MARKET FOR -- ON 4633 03:04:44,039 --> 03:04:47,409 THE STREET FOR THE RARE 4634 03:04:47,476 --> 03:04:49,845 DISEASES, SO NHLBI WILL SUPPORT 4635 03:04:49,912 --> 03:04:50,546 INVESTIGATION IN RARE DISEASES, 4636 03:04:50,612 --> 03:04:52,014 THEY ARE NOT GOING TO BE UPSET 4637 03:04:52,080 --> 03:04:53,449 IF THERE ARE ONLY A THOUSAND 4638 03:04:53,515 --> 03:04:55,217 PEOPLE WHO HAVE THIS DISEASE. 4639 03:04:55,284 --> 03:04:59,688 IT MAY BE VERY INFORMATIVE FOR 4640 03:04:59,755 --> 03:05:02,424 THE REST OF THE MILLIONS. 4641 03:05:02,491 --> 03:05:09,565 PLEASE DON'T FOR THAT. 4642 03:05:09,631 --> 03:05:10,399 >> LYMPHEDEMA COULD BE 4643 03:05:10,466 --> 03:05:12,568 CLASSIFIED AS A RARE DISEASE, SO 4644 03:05:12,634 --> 03:05:15,270 VERY MUCH WITHIN THE PURVIEW LET 4645 03:05:15,337 --> 03:05:16,772 ALONE THE MUCH MORE RARE -- 4646 03:05:16,839 --> 03:05:18,707 >> THAT'S BECAUSE WE CAN USE THE 4647 03:05:18,774 --> 03:05:20,476 FACT WE DON'T KNOW HOW MANY -- 4648 03:05:20,542 --> 03:05:23,045 >> I WAS GOING TO SAY IN TERMS 4649 03:05:23,111 --> 03:05:28,417 OF MEASUREMENT, I THINK ONE 4650 03:05:28,484 --> 03:05:31,019 INITIAL CLEAVAGE POINT, DO YOU 4651 03:05:31,086 --> 03:05:37,059 WANT TO DEAL WITH DEFINITION OF 4652 03:05:37,125 --> 03:05:39,828 DISEASE FROM SUBJECTIVE 4653 03:05:39,895 --> 03:05:40,696 PERSPECTIVE, WITH DISEASE 4654 03:05:40,762 --> 03:05:41,163 ASCERTAINMENT? 4655 03:05:41,230 --> 03:05:43,198 IF THE LATTER WE'LL HAVE TO GET 4656 03:05:43,265 --> 03:05:45,834 INTO HEALTH CARE DATABASES AND 4657 03:05:45,901 --> 03:05:46,935 THIRD-PARTY PAYER OUTCOME AS 4658 03:05:47,002 --> 03:05:51,106 OPPOSED TO ASKING PEOPLE TO 4659 03:05:51,173 --> 03:05:52,741 QUEUE UP AND SAY AS A CLINICIAN 4660 03:05:52,808 --> 03:05:55,511 THERE ARE MANY PEOPLE WHO DEFINE 4661 03:05:55,577 --> 03:05:56,812 THEMSELVES HAVING LYMPHATIC 4662 03:05:56,879 --> 03:05:59,414 DISEASE I CANNOT ASCERTAIN THE 4663 03:05:59,481 --> 03:06:00,115 DISEASE. 4664 03:06:00,182 --> 03:06:00,983 SO, THAT'S A DISCRIMINATING 4665 03:06:01,049 --> 03:06:02,117 POINT TO START WITH. 4666 03:06:02,184 --> 03:06:08,090 WE MIGHT START WITH THE MORE 4667 03:06:08,156 --> 03:06:09,892 OBJECTIVELY VALIDATABLE SUBSETS, 4668 03:06:09,958 --> 03:06:13,962 WHETHER BY IMAGING, EVEN BY 4669 03:06:14,029 --> 03:06:17,366 OBJECTIVE DIAGNOSIS, BY ICD-10 4670 03:06:17,432 --> 03:06:19,468 CODE. 4671 03:06:19,535 --> 03:06:20,536 >> ANSWER SMALL WITH 4672 03:06:20,602 --> 03:06:26,341 CANCER-RELATED IMTAMPA DEEM -- 4673 03:06:26,408 --> 03:06:27,142 LYMPHEDEMA. 4674 03:06:27,209 --> 03:06:28,076 WE HAVE CENTERS OF EXCELLENCE 4675 03:06:28,143 --> 03:06:30,612 ALL OVER THE WORLD, WE COULD TRY 4676 03:06:30,679 --> 03:06:31,713 TO ESTABLISH A QUESTIONNAIRE TO 4677 03:06:31,780 --> 03:06:33,348 SEND TO SOME OF THOSE PEOPLE TO 4678 03:06:33,415 --> 03:06:36,752 SEE IF WE CAN PROBE OUT SOME 4679 03:06:36,818 --> 03:06:39,154 DATA FROM THEM THAT MIGHT BE 4680 03:06:39,221 --> 03:06:40,355 USEFUL TO DETERMINE AND PRESENT 4681 03:06:40,422 --> 03:06:42,324 TO INDUSTRY HERE LOOK HOW BIG 4682 03:06:42,391 --> 03:06:44,026 THIS PROBLEM IS, THESE ARE 4683 03:06:44,092 --> 03:06:46,061 NUMBERS THAT WE THINK ARE -- AND 4684 03:06:46,128 --> 03:06:48,363 THIS IS THE IMPACT ON HEALTH 4685 03:06:48,430 --> 03:06:50,232 CARE SYSTEMS, THIS IS HOW MUCH 4686 03:06:50,299 --> 03:06:53,468 IT'S COSTING PATIENTS, IT'S 4687 03:06:53,535 --> 03:06:54,570 COSTING PARTICULARLY WHERE THEY 4688 03:06:54,636 --> 03:06:57,940 HAVE -- WHAT DO YOU CALL IT? 4689 03:06:58,006 --> 03:06:59,841 STATE-RUN MEDICINE. 4690 03:06:59,908 --> 03:07:00,976 THEY HAVE REALLY GOOD RECORDS. 4691 03:07:01,043 --> 03:07:04,012 THAT'S A SOURCE OF INFORMATION. 4692 03:07:04,079 --> 03:07:05,414 >> JUST IN TERMS OF DISCUSSION 4693 03:07:05,480 --> 03:07:08,350 OF THIS GROUP I WANT TO NOT PUSH 4694 03:07:08,417 --> 03:07:12,087 THIS BACK INTO THE TUBE BUT JUST 4695 03:07:12,154 --> 03:07:16,992 CONTEXTUALIZE IT. 4696 03:07:17,059 --> 03:07:18,193 THIS GROUP, THE MEASURABLE 4697 03:07:18,260 --> 03:07:20,295 RESULTS GROUP, THE NAME IS 4698 03:07:20,362 --> 03:07:21,063 UNFORTUNATE BECAUSE MY 4699 03:07:21,129 --> 03:07:24,566 UNDERSTANDING IS SO WE DON'T 4700 03:07:24,633 --> 03:07:26,335 ACTUALLY HAVE A THING WE DO. 4701 03:07:26,401 --> 03:07:28,370 WE'RE A GROWING THAT DOESN'T DO 4702 03:07:28,437 --> 03:07:30,072 ANYTHING EXCEPT WE LIVE IN ALL 4703 03:07:30,138 --> 03:07:31,707 THE OTHER GROUPS, WE'RE LIKE 4704 03:07:31,773 --> 03:07:34,443 JIMINY CRICKET ON THE SHOULDER 4705 03:07:34,509 --> 03:07:36,311 SAYING, "NOBODY'S GOING TO 4706 03:07:36,378 --> 03:07:38,747 MEASURE THAT, HOW WILL YOU KNOW 4707 03:07:38,814 --> 03:07:43,085 IF THAT ACTUALLY WORKS," RIGHT? 4708 03:07:43,151 --> 03:07:45,921 SO I THINK CLEARLY THE MARKET 4709 03:07:45,988 --> 03:07:47,055 SIZE, THE DISEASE BURDEN, NUMBER 4710 03:07:47,122 --> 03:07:49,224 OF PEOPLE WHO ARE SUBJECT TO 4711 03:07:49,291 --> 03:07:50,425 THESE CONDITIONS AND THE 4712 03:07:50,492 --> 03:07:53,295 DIFFERENT CHRISTIANS AND WHICH 4713 03:07:53,362 --> 03:07:54,730 CONDITIONS, THAT'S CLEARLY A 4714 03:07:54,796 --> 03:07:56,465 QUESTION THAT A COUPLE OF THE 4715 03:07:56,531 --> 03:07:57,432 OTHER COMMITTEES ARE GOING TO 4716 03:07:57,499 --> 03:07:58,467 NEED TOE HAVE. 4717 03:07:58,533 --> 03:08:00,535 THAT'S ONE OF THE QUANTIFIABLE 4718 03:08:00,602 --> 03:08:04,906 THINGS THAT THEY WILL HAVE TO 4719 03:08:04,973 --> 03:08:05,173 ASCERTAIN. 4720 03:08:05,240 --> 03:08:06,775 OUR JOB IS TO TELL YOU TO DO 4721 03:08:06,842 --> 03:08:08,043 THAT WHICH YOU ALREADY KNOW YOU 4722 03:08:08,110 --> 03:08:09,211 NEED TO DO. 4723 03:08:09,277 --> 03:08:13,415 IT'S MORE LIKE AT THE BEGINNING 4724 03:08:13,482 --> 03:08:15,951 HOW DO WE KNOW THAT THE THINGS 4725 03:08:16,018 --> 03:08:20,222 WE DO IN THE PATIENT ACCESS, IN 4726 03:08:20,288 --> 03:08:21,289 THE THIRD-PARTY PAYER AND 4727 03:08:21,356 --> 03:08:22,924 SCIENTIFIC SPACE, HOW DO WE 4728 03:08:22,991 --> 03:08:23,692 ACTUALLY KNOW WE'RE MEASURING 4729 03:08:23,759 --> 03:08:25,894 THE RIGHT THINGS, HOW DO WE KNOW 4730 03:08:25,961 --> 03:08:26,895 OUR INTERVENTIONS -- BECAUSE 4731 03:08:26,962 --> 03:08:28,730 WE'RE GOING TO PROPOSE A BUNCH 4732 03:08:28,797 --> 03:08:29,931 OF INTERVENTIONS, HOW DO YOU 4733 03:08:29,998 --> 03:08:33,468 KNOW THEY ARE EFFECTIVE? 4734 03:08:33,535 --> 03:08:35,103 AND WHEN WE FIND OUT THIS THING 4735 03:08:35,170 --> 03:08:37,005 WE THOUGHT WOULD WORK DOESN'T, 4736 03:08:37,072 --> 03:08:38,407 WHAT DO WE DO THEN? 4737 03:08:38,473 --> 03:08:40,475 IN THE FUTURE WHEN THERE'S A 4738 03:08:40,542 --> 03:08:41,877 DURABLE BODY OR SITUATION THAT 4739 03:08:41,943 --> 03:08:49,551 LIVES IN THE FUTURE WHAT IS ITS 4740 03:08:49,618 --> 03:08:57,993 ITERATIVE PROCESS FOR 4741 03:08:58,060 --> 03:08:58,960 REAASSESSING PRIORITIES AND 4742 03:08:59,027 --> 03:09:00,162 MEASURING EFFICACY. 4743 03:09:00,228 --> 03:09:03,098 IT'S A MET A-GROUP, WE GET TIED 4744 03:09:03,165 --> 03:09:05,667 UP IN WHAT IS LYMPHATIC 4745 03:09:05,734 --> 03:09:06,835 FUNCTION, A MEASURABLE THINGS, 4746 03:09:06,902 --> 03:09:09,137 BUT ALL THE GROUPS ARE GOING TO 4747 03:09:09,204 --> 03:09:11,973 HAVE TO TACKLE. 4748 03:09:12,040 --> 03:09:13,442 >> ONE COMMENT, EVERYTHING 4749 03:09:13,508 --> 03:09:14,843 YOU'RE SAYING IS BEAUTIFUL. 4750 03:09:14,910 --> 03:09:18,180 WHAT I UNDERSTAND FROM MY 4751 03:09:18,246 --> 03:09:19,848 PERSPECTIVE, WE WILL -- THIS 4752 03:09:19,915 --> 03:09:20,949 GROUP WILL CREATE A REPORT AT 4753 03:09:21,016 --> 03:09:23,251 THE END OF OUR LIFESPAN THAT 4754 03:09:23,318 --> 03:09:24,352 GOES TO THE ADVISORY COUNCIL 4755 03:09:24,419 --> 03:09:27,422 THAT MAY OR MAY NOT BE 4756 03:09:27,489 --> 03:09:28,890 IMPLEMENTED INCLUDING WHAT ARE 4757 03:09:28,957 --> 03:09:31,126 THE MEASURES THAT WILL BE 4758 03:09:31,193 --> 03:09:31,526 UTILIZED. 4759 03:09:31,593 --> 03:09:33,528 EVERYTHING WE'RE TALKING ABOUT 4760 03:09:33,595 --> 03:09:36,398 IS IN A WAY FUTURISTIC. 4761 03:09:36,465 --> 03:09:38,800 WE'LL NOT GET RETURN ON THOSE 4762 03:09:38,867 --> 03:09:44,473 QUESTIONS AS AN ENTITY CAN YOU 4763 03:09:44,539 --> 03:09:49,177 CAN PROPOSE A WAY TO MEASURE THE 4764 03:09:49,244 --> 03:09:52,214 THINGS WE'RE PROPOSING. 4765 03:09:52,280 --> 03:09:54,549 >> JUST I FEEL THAT FOR THE 4766 03:09:54,616 --> 03:10:02,257 MEASURABLE OUTCOMES WE NEED TO 4767 03:10:02,324 --> 03:10:03,391 BE DEFINING SUCCESS. 4768 03:10:03,458 --> 03:10:04,760 SCIENTIFIC ADVANCEMENT, WHAT IS 4769 03:10:04,826 --> 03:10:05,794 A SUCCESSFUL IMPLEMENTATION OF 4770 03:10:05,861 --> 03:10:08,430 THE ROAD MAP, WHAT DOES IT LOOK 4771 03:10:08,497 --> 03:10:08,764 LIKE? 4772 03:10:08,830 --> 03:10:10,432 WITHOUT THAT IT'S -- HOW WILL 4773 03:10:10,499 --> 03:10:13,668 YOU MEASURE THAT SUCCESS. 4774 03:10:13,735 --> 03:10:16,204 BY DEFINING WHAT WE CONSIDER 4775 03:10:16,271 --> 03:10:17,572 SUCCESS, HOPEFULLY THAT OUTCOME 4776 03:10:17,639 --> 03:10:19,174 BECOMES -- SO UNTIL WE AS A 4777 03:10:19,241 --> 03:10:20,809 COMMISSION SORT OF DEFINE THOSE 4778 03:10:20,876 --> 03:10:21,510 SUCCESSFUL THINGS WE'RE NOT 4779 03:10:21,576 --> 03:10:23,545 GOING TO BE ABLE TO MEASURE 4780 03:10:23,612 --> 03:10:24,079 ANYTHING, RIGHT? 4781 03:10:24,146 --> 03:10:28,917 PART OF THE CHARGE FOR TODAY AND 4782 03:10:28,984 --> 03:10:29,985 THE ONGOING WORK. 4783 03:10:30,051 --> 03:10:34,189 >> SO TO ILLUSTRATE THE POINT, 4784 03:10:34,256 --> 03:10:42,197 TWO DISEASES RIGHT NOW, 4785 03:10:42,264 --> 03:10:42,564 (INDISCERNIBLE). 4786 03:10:42,631 --> 03:10:46,535 ONE IS EASY. 4787 03:10:46,601 --> 03:10:47,702 WE CAN MEASURE LEVEL. 4788 03:10:47,769 --> 03:10:48,770 WE'RE VERY GOOD THERE. 4789 03:10:48,837 --> 03:10:51,807 IT COULD BE A HUGE MARKET, 30% 4790 03:10:51,873 --> 03:10:59,080 OF PATIENTS IN HOSPITAL HAVE LOW 4791 03:10:59,147 --> 03:10:59,414 ALBUMIN. 4792 03:10:59,481 --> 03:11:04,019 THEN WE HAVE ANOTHER DISEASE, WE 4793 03:11:04,085 --> 03:11:06,888 DISCOVERED ACCIDENTALLY, 4794 03:11:06,955 --> 03:11:10,625 PATIENTS WERE VERY SICK, WE 4795 03:11:10,692 --> 03:11:12,828 FIGURE OUT OBSTRUCTED, TO OPEN 4796 03:11:12,894 --> 03:11:18,500 IT UP, WE START TO GET A LOT OF 4797 03:11:18,567 --> 03:11:23,004 PATIENTS, 30% OF IN THIS 4798 03:11:23,071 --> 03:11:24,840 COUNTRY, STUDIED IN ENGLAND, 4799 03:11:24,906 --> 03:11:25,507 (INDISCERNIBLE). 4800 03:11:25,574 --> 03:11:28,109 FROM THE SEVERE DISEASES STARTED 4801 03:11:28,176 --> 03:11:34,783 TO GET INTO THE KIND OF ON THE 4802 03:11:34,850 --> 03:11:35,884 BORDER, BLOATING, EDEMA, AND 4803 03:11:35,951 --> 03:11:37,419 WE'RE LOST RIGHT NOW, TOTALLY 4804 03:11:37,485 --> 03:11:38,186 LOST. 4805 03:11:38,253 --> 03:11:43,024 WE DO THE PROCEDURES, PEOPLE ARE 4806 03:11:43,091 --> 03:11:46,928 SAYING CHANGE THEIR LIVES BY WE 4807 03:11:46,995 --> 03:11:48,363 DON'T HAVE OBJECTIVE, PLACEBO 4808 03:11:48,430 --> 03:11:49,364 VERSUS PLACEBO. 4809 03:11:49,431 --> 03:11:54,502 SOME PEOPLE WHO CARES, THE 4810 03:11:54,569 --> 03:11:56,571 PATIENT GOT BETTER? 4811 03:11:56,638 --> 03:12:00,408 REALLY, REALLY TO ILLUSTRATE HOW 4812 03:12:00,475 --> 03:12:02,043 DIFFICULT UNLESS WE HAVE 4813 03:12:02,110 --> 03:12:04,579 IMAGING WHERE WE CAN SEE 4814 03:12:04,646 --> 03:12:11,386 IMPROVED FLOW AND THEN SOME 4815 03:12:11,453 --> 03:12:11,586 TYPE. 4816 03:12:11,653 --> 03:12:13,755 >> I SEE TO THAT POINT A BIG 4817 03:12:13,822 --> 03:12:15,790 CHALLENGE THAT MAYBE THIS GROUP 4818 03:12:15,857 --> 03:12:18,360 NEEDS TO ADDRESS, THERE'S THE 4819 03:12:18,426 --> 03:12:19,694 ACTIONABLE LYMPHATIC DISEASES WE 4820 03:12:19,761 --> 03:12:21,630 KNOW OF THAT THIS COMMISSION IS 4821 03:12:21,696 --> 03:12:23,265 CHARGED WITH, AND THE PATIENT 4822 03:12:23,331 --> 03:12:24,799 POPULATION HAS BEEN SO 4823 03:12:24,866 --> 03:12:26,134 MARGINALIZED BUT THERE'S A 4824 03:12:26,201 --> 03:12:27,435 COMPONENT OF THE COMMITTEE THAT 4825 03:12:27,502 --> 03:12:29,004 SHOULD BE VISIONARY, THINGS WE 4826 03:12:29,070 --> 03:12:32,007 DON'T KNOW OF, DIFFICULT TO 4827 03:12:32,073 --> 03:12:33,875 MEASURE, WE CAN'T MEASURE 4828 03:12:33,942 --> 03:12:34,442 LYMPHATIC DISEASES WE'RE 4829 03:12:34,509 --> 03:12:35,744 STARTING TO UNDERSTAND THE ROLE 4830 03:12:35,810 --> 03:12:40,181 OF THE LYMPHATICS IS THE 4831 03:12:40,248 --> 03:12:41,249 CARDIOVASCULAR SYSTEM, ET 4832 03:12:41,316 --> 03:12:42,050 CETERA. 4833 03:12:42,117 --> 03:12:43,685 I STRUGGLE WITH MEASURABLE 4834 03:12:43,752 --> 03:12:45,420 OUTCOMES FOR PEOPLE WE NEED TO 4835 03:12:45,487 --> 03:12:47,889 HELP NOW BUT DON'T WANT TO LOSE 4836 03:12:47,956 --> 03:12:50,058 VISIONARY ASPECTS, THE 4837 03:12:50,125 --> 03:12:51,393 OPPORTUNITY TO DO THAT. 4838 03:12:51,459 --> 03:12:53,828 HOW DO WE PUT THAT INTO 4839 03:12:53,895 --> 03:12:55,497 SOMETHING MEASURABLE, BRINGING 4840 03:12:55,563 --> 03:12:57,232 UP SOMETHING I I DON'T -- 4841 03:12:57,299 --> 03:12:58,934 >> THAT'S AN IMPORTANT POINT. 4842 03:12:59,000 --> 03:13:01,236 WHAT I WOULD DO IS REGRESS 4843 03:13:01,303 --> 03:13:02,570 BACKWARDS TO WHAT IS SOMETHING 4844 03:13:02,637 --> 03:13:04,105 THAT IS MEASURABLE THAT COULD 4845 03:13:04,172 --> 03:13:06,708 LEAD TO THAT VISIONARY STATE, 4846 03:13:06,775 --> 03:13:12,080 AND THAT COULD BE THINGS LIKE 4847 03:13:12,147 --> 03:13:22,557 PENETRATION INTO MEDICAL 4848 03:13:24,359 --> 03:13:28,363 SOCIETIES, EVANGELIZING OF 4849 03:13:28,430 --> 03:13:29,264 MEDICAL SCHOOL CURRICULA, 4850 03:13:29,331 --> 03:13:32,100 REFLECTING CASTING OF NET 4851 03:13:32,167 --> 03:13:35,403 OUTWARD BUT STILL QUANTIFIABLE, 4852 03:13:35,470 --> 03:13:37,272 NOT DIRECTLY CONNECTED TO 4853 03:13:37,339 --> 03:13:38,039 PATIENT OUTCOMES. 4854 03:13:38,106 --> 03:13:39,407 >> I'M SAYING BUILD A TEMPLATE 4855 03:13:39,474 --> 03:13:45,213 TO START SMALL WITH THINGS WE 4856 03:13:45,280 --> 03:13:46,748 KNOW, LYMPHEDEMA, CANCER-RELATED 4857 03:13:46,815 --> 03:13:47,615 LYMPHEDEMA AND DEVELOP METRICS 4858 03:13:47,682 --> 03:13:49,651 FOR THAT, THAT MIGHT BE A 4859 03:13:49,718 --> 03:13:53,621 TEMPLATE FOR VISIONARY THINGS. 4860 03:13:53,688 --> 03:13:54,856 >> YEAH, I REALLY DON'T WANT TO 4861 03:13:54,923 --> 03:13:57,258 LOSE TRACK OF THE OTHERS. 4862 03:13:57,325 --> 03:13:58,660 I'M SORRY ON THAT. 4863 03:13:58,727 --> 03:14:01,396 NO, BECAUSE I KNOW WHAT'S GOING 4864 03:14:01,463 --> 03:14:02,097 TO HAPPEN. 4865 03:14:02,163 --> 03:14:05,567 EVENTUALLY NOTHING IS GOING TO 4866 03:14:05,633 --> 03:14:06,001 HAPPEN. 4867 03:14:06,067 --> 03:14:10,271 I'VE SEEN THAT VERY OFTEN. 4868 03:14:10,338 --> 03:14:13,375 THE OPPORTUNITY TO EXPAND WHAT 4869 03:14:13,441 --> 03:14:15,276 WE'RE DOING, I REALLY INSIST ON 4870 03:14:15,343 --> 03:14:15,744 THAT. 4871 03:14:15,810 --> 03:14:20,048 GOING TO MAX, I'M CONFUSED, 4872 03:14:20,115 --> 03:14:23,852 THERE'S NO MEASURABLE OUTCOMES. 4873 03:14:23,918 --> 03:14:25,353 IF SOMEBODY HAS LYMPHEDEMA, IF 4874 03:14:25,420 --> 03:14:29,958 YOU SEE YOU TREAT NO MATTER HOW, 4875 03:14:30,025 --> 03:14:31,493 BUT LYMPHEDEMA IS REDUCED, 4876 03:14:31,559 --> 03:14:34,362 THAT'S A MEASUREMENT. 4877 03:14:34,429 --> 03:14:35,864 >> FOR ME TALKING ABOUT FOR SURE 4878 03:14:35,930 --> 03:14:37,465 THE PATIENT TELL YOU WITHIN TWO 4879 03:14:37,532 --> 03:14:39,100 WEEKS I LOST 20 POUNDS, WE 4880 03:14:39,167 --> 03:14:42,437 BELIEVE THAT, RIGHT? 4881 03:14:42,504 --> 03:14:45,540 OTHER PEOPLE HAVE JUST BLOATING, 4882 03:14:45,607 --> 03:14:46,341 BLOATING PAIN, THAT'S FOR 4883 03:14:46,408 --> 03:14:50,045 EXAMPLE VERY HARD TO MEASURE. 4884 03:14:50,111 --> 03:14:53,915 ACCORDING TO THEM WE CHANGED 4885 03:14:53,982 --> 03:14:55,116 THEIR LIFE, THEY FEEL MUCH 4886 03:14:55,183 --> 03:14:58,486 BETTER, WE DON'T KNOW IF IT'S 4887 03:14:58,553 --> 03:15:01,623 TRUE OR JUST IN THE HEAD. 4888 03:15:01,689 --> 03:15:07,128 BABAK WILL TELL YOU EVEN THAT IS 4889 03:15:07,195 --> 03:15:07,495 VERY DIFFICULT. 4890 03:15:07,562 --> 03:15:09,731 NOT STRAIGHTFORWARD. 4891 03:15:09,798 --> 03:15:11,132 >> BECAUSE THE MEASUREMENT IS 4892 03:15:11,199 --> 03:15:13,468 SOMEWHAT SUBJECTIVE AND YOU CAN 4893 03:15:13,535 --> 03:15:16,037 HAVE ERRORS WITH THE 4894 03:15:16,104 --> 03:15:16,771 MEASUREMENT. 4895 03:15:16,838 --> 03:15:17,572 IT'S NOT AN AUTOMATED 4896 03:15:17,639 --> 03:15:19,874 MEASUREMENT THAT YOU CAN DO. 4897 03:15:19,941 --> 03:15:22,844 BUT IT'S NOT GREAT. 4898 03:15:22,911 --> 03:15:27,082 ALSO, FOR THE VOLUME TO DECREASE 4899 03:15:27,148 --> 03:15:29,317 IN LYMPHEDEMA, THAT'S THE LAST 4900 03:15:29,384 --> 03:15:30,518 THING THAT HAPPENS, THE LAST 4901 03:15:30,585 --> 03:15:32,620 STEP IN THE PROCESS. 4902 03:15:32,687 --> 03:15:33,755 THEY MAY FEEL BETTER, A LOT OF 4903 03:15:33,822 --> 03:15:36,758 PATIENTS DO, BUT VOLUME MAY NOT 4904 03:15:36,825 --> 03:15:37,192 CHANGES. 4905 03:15:37,258 --> 03:15:38,693 THAT'S AN ISSUE. 4906 03:15:38,760 --> 03:15:41,296 >> THEN WE HAVE A REALLY 4907 03:15:41,362 --> 03:15:43,498 DIFFICULT TASK BECAUSE WE HAVE 4908 03:15:43,565 --> 03:15:46,568 BEEN DISCUSSING ABOUT MEASURES 4909 03:15:46,634 --> 03:15:51,973 OF SUCCESS AND WHAT YOU GUYS ARE 4910 03:15:52,040 --> 03:15:54,008 TELLING US KEY CAN'T MEASURE 4911 03:15:54,075 --> 03:15:59,714 IMPROVEMENT UPON PATIENTS WITH 4912 03:15:59,781 --> 03:16:01,316 SOME TYPE OF -- 4913 03:16:01,382 --> 03:16:02,617 >> OBJECTIVE. 4914 03:16:02,684 --> 03:16:04,018 >> THAT'S WITH EVERYONE, 4915 03:16:04,085 --> 03:16:07,589 INSURANCE COMPANIES, SO HOW DO 4916 03:16:07,655 --> 03:16:11,292 WE OVERCOME THAT. 4917 03:16:11,359 --> 03:16:14,562 >> IT'S INTERESTING, THE FDA ON 4918 03:16:14,629 --> 03:16:17,765 THE OTHER HAND IS MOVING TO 4919 03:16:17,832 --> 03:16:18,500 SUBJECTIVE IMPROVEMENTS FOR 4920 03:16:18,566 --> 03:16:18,766 APPROVAL. 4921 03:16:18,833 --> 03:16:21,402 THEY SAY WHAT DOES THE PATIENT 4922 03:16:21,469 --> 03:16:23,104 CARE IF HEMOGLOBIN WENT FROM 12 4923 03:16:23,171 --> 03:16:25,073 TO 11 IF THEY CAN'T FEEL IT? 4924 03:16:25,140 --> 03:16:28,143 BUT IF IT GOES FROM 8 TO 3 ON 4925 03:16:28,209 --> 03:16:29,310 SYMPTOM SCALE, THAT'S IMPORTANT, 4926 03:16:29,377 --> 03:16:29,711 RIGHT? 4927 03:16:29,777 --> 03:16:34,782 THE SUBJECTIVE THINGS ARE NOT 4928 03:16:34,849 --> 03:16:36,284 IRRELEVANT. 4929 03:16:36,351 --> 03:16:38,586 >> YOU CONVINCE TO MOVE FROM 4930 03:16:38,653 --> 03:16:39,120 FROM -- 4931 03:16:39,187 --> 03:16:45,326 >> A GOOD THING. 4932 03:16:45,393 --> 03:16:46,661 >> I COULDN'T ARGUE, 4933 03:16:46,728 --> 03:16:47,462 (INDISCERNIBLE), PATIENT COMES 4934 03:16:47,529 --> 03:16:50,565 TWO WEEKS LATER, THEY WILL TELL 4935 03:16:50,632 --> 03:16:55,069 ME SHE'S IMPROVE SIGNIFICANTLY 4936 03:16:55,136 --> 03:16:57,405 BECAUSE I HAVE ANOTHER 4937 03:16:57,472 --> 03:16:57,972 (INDISCERNIBLE) ABSOLUTELY 4938 03:16:58,039 --> 03:16:59,040 CHANGED MY LIFE. 4939 03:16:59,107 --> 03:17:00,542 WE DON'T HAVE OBJECTIVE 4940 03:17:00,608 --> 03:17:02,043 MEASUREMENTS, THAT BOTHERS ME A 4941 03:17:02,110 --> 03:17:02,377 LOT. 4942 03:17:02,443 --> 03:17:03,745 >> I THINK MEASUREMENTS WILL BE 4943 03:17:03,811 --> 03:17:05,680 DIFFICULT FOR PATIENT TREATMENTS 4944 03:17:05,747 --> 03:17:08,016 BUT I THINK FOR COMMUNITY GROWTH 4945 03:17:08,082 --> 03:17:09,784 AND PATIENT EDUCATION WE CAN 4946 03:17:09,851 --> 03:17:10,818 DEFINITELY MEASURE WHETHER OR 4947 03:17:10,885 --> 03:17:14,756 NOT WE'RE MAKING AN IMPACT THERE 4948 03:17:14,822 --> 03:17:16,057 SO YOU'RE RIGHT, GUILLERMO, 4949 03:17:16,124 --> 03:17:18,960 TREATMENT WILL BE TRICKIER TO 4950 03:17:19,027 --> 03:17:19,894 MEASURE SUCCESSFUL OUTCOMES BUT 4951 03:17:19,961 --> 03:17:20,895 I THINK FOR SOME OTHER 4952 03:17:20,962 --> 03:17:25,066 SUBCOMMITTEES IT WILL BE AN 4953 03:17:25,133 --> 03:17:25,600 EASIER TASK. 4954 03:17:25,667 --> 03:17:28,236 >> ALSO WILL IT BE POSSIBLE FOR 4955 03:17:28,303 --> 03:17:30,271 YOU GUYS, CLINICIANS, SOMEHOW TO 4956 03:17:30,338 --> 03:17:32,840 MAKE A LIST WHAT ARE THE 4957 03:17:32,907 --> 03:17:34,142 AVAILABLE TREATMENTS AT THE 4958 03:17:34,209 --> 03:17:42,383 MOMENT FOR PATIENTS WITH ANY 4959 03:17:42,450 --> 03:17:45,253 TYPE OF LYMPHATIC MALFUNCTION? 4960 03:17:45,320 --> 03:17:47,522 FOR SCIENTISTS LIKE ME, MASSAGE, 4961 03:17:47,589 --> 03:17:50,458 THE GARMENTS, IS THERE ANYTHING 4962 03:17:50,525 --> 03:17:50,825 ELSE -- 4963 03:17:50,892 --> 03:17:53,061 >> IT DEPENDS ON SUBSET OF 4964 03:17:53,127 --> 03:17:54,062 LYMPHATIC DIAGNOSIS. 4965 03:17:54,128 --> 03:17:55,863 >> RIGHT, RIGHT, BUT MAYBE JUST 4966 03:17:55,930 --> 03:18:00,635 TO HAVE -- I DON'T THINK WE'VE 4967 03:18:00,702 --> 03:18:02,136 BEEN TO. 4968 03:18:02,203 --> 03:18:02,670 >> IT'S NOT MANY, MANY. 4969 03:18:02,737 --> 03:18:08,409 >> FOR WOULD BE USEFUL FOR 4970 03:18:08,476 --> 03:18:11,546 PATIENTS, FOR US, WHAT CAN BE 4971 03:18:11,613 --> 03:18:12,413 IMPROVED, HOW OFTEN -- 4972 03:18:12,480 --> 03:18:17,151 >> THERE'S TONS OF PAPERS ON 4973 03:18:17,218 --> 03:18:19,420 SYSTEMATIC REVIEWS FOR TREATING 4974 03:18:19,487 --> 03:18:20,622 LYMPHEDEMA, INCLUDING SEVERAL 4975 03:18:20,688 --> 03:18:24,926 FROM OURS SHOWING OUTCOMES FROM 4976 03:18:24,993 --> 03:18:26,461 DIFFERENT SURGICAL PROCEDURES, 4977 03:18:26,527 --> 03:18:27,862 BYPASS, LYMPH NODE TRANSPLANT, 4978 03:18:27,929 --> 03:18:28,796 LIPOSUCTION, ET CETERA. 4979 03:18:28,863 --> 03:18:30,999 THOSE PAPERS ARE OUT THERE FOR 4980 03:18:31,065 --> 03:18:31,399 SURE. 4981 03:18:31,466 --> 03:18:35,303 THERE'S LOTS OF THEM. 4982 03:18:35,370 --> 03:18:36,304 GOOD QUALITY PAPERS. 4983 03:18:36,371 --> 03:18:38,106 >> HOW DID YOU MEASURE THE 4984 03:18:38,172 --> 03:18:41,576 SUCCESS BASED ON WHAT THESE GUYS 4985 03:18:41,643 --> 03:18:43,411 WERE SAYING? 4986 03:18:43,478 --> 03:18:47,915 >> YOU KNOW, IT'S MEASUREMENTS 4987 03:18:47,982 --> 03:18:51,386 COMMONLY ACCEPTED FOR TREATING 4988 03:18:51,452 --> 03:19:00,061 LYMPHEDEMA, VOLUME, ALDEX, 4989 03:19:00,128 --> 03:19:03,464 PATIENT-REPORTED SYSTEMS, THINGS 4990 03:19:03,531 --> 03:19:04,799 LIKE THAT. 4991 03:19:04,866 --> 03:19:06,167 >> THE OUTCOMES AND MEASURES, 4992 03:19:06,234 --> 03:19:12,340 CLINICALLY A LOT OF CLINICIANS, 4993 03:19:12,407 --> 03:19:15,176 HERE AND NOT HERE UNDERSTAND 4994 03:19:15,243 --> 03:19:16,077 HETEROGENEOUS COMPONENTS. 4995 03:19:16,144 --> 03:19:17,812 SOMEBODY COULD HAVE A REDUCTION 4996 03:19:17,879 --> 03:19:20,081 IN VOLUME, WONDERFUL AND 4997 03:19:20,148 --> 03:19:22,583 MEASURABLE, ANOTHER PERSON WHO 4998 03:19:22,650 --> 03:19:23,785 HAS SUCCESS FROM SURGICAL 4999 03:19:23,851 --> 03:19:25,420 OUTCOMES LET'S SAY WON'T HAVE 5000 03:19:25,486 --> 03:19:28,289 THE SAME AMOUNT OF VOLUMETRIC 5001 03:19:28,356 --> 03:19:29,090 REDUCTION. 5002 03:19:29,157 --> 03:19:32,760 HOWEVER, WE GET INTO SOME 5003 03:19:32,827 --> 03:19:36,964 PATIENTS, MAYBE IT MIGHT BE 5004 03:19:37,031 --> 03:19:40,234 BIOPEAKS OR SOMETHING 5005 03:19:40,301 --> 03:19:41,436 SUBJECTIVE, BUT QUITE A 5006 03:19:41,502 --> 03:19:42,203 HETEROGENEOUS GROUP. 5007 03:19:42,270 --> 03:19:45,039 THAT'S THE CHALLENGE. 5008 03:19:45,106 --> 03:19:47,475 THAT'S WHAT I RAN INTO IN THE 5009 03:19:47,542 --> 03:19:50,411 PHARMACEUTICAL END, IT'S NOT AS 5010 03:19:50,478 --> 03:19:51,779 SIMPLE AS WE'RE GOING TO USE 5011 03:19:51,846 --> 03:19:57,151 VOLUME, THERE WE GO. 5012 03:19:57,218 --> 03:19:58,152 IT'S HARD AND CHALLENGING. 5013 03:19:58,219 --> 03:19:59,387 >> FROM THE POINT OF VIEW OF 5014 03:19:59,454 --> 03:20:03,558 INDUSTRY YOU NEED TO 5015 03:20:03,624 --> 03:20:05,426 DEMONSTRATE YOU HAD TO HIT YOUR 5016 03:20:05,493 --> 03:20:07,228 TARGET. 5017 03:20:07,295 --> 03:20:11,532 HAVE 5018 03:20:11,599 --> 03:20:14,936 YOU HAVE TO PROVE YOU HIT THAT 5019 03:20:15,002 --> 03:20:15,169 TARGET. 5020 03:20:15,236 --> 03:20:18,539 AS BABAK SAID, IT'S A SECONDARY 5021 03:20:18,606 --> 03:20:20,274 TYPE OF BIOMARKER, YES, EDEMA 5022 03:20:20,341 --> 03:20:21,743 DECREASE, BUT THE QUESTION IS 5023 03:20:21,809 --> 03:20:23,344 DID IT DECREASE BECAUSE YOU 5024 03:20:23,411 --> 03:20:26,647 ACTUALLY HIT THE TARGET YOU TOLD 5025 03:20:26,714 --> 03:20:28,182 ME YOU WERE GOING TO HIT, FROM 5026 03:20:28,249 --> 03:20:29,984 THE POINT OF VIEW OF INDUSTRY. 5027 03:20:30,051 --> 03:20:32,820 HOWEVER, I WANT TO SAY WE HAVE A 5028 03:20:32,887 --> 03:20:35,623 LOT OF CLINICAL TRIALS NOW THAT 5029 03:20:35,690 --> 03:20:40,962 MEASURE QUALITY OF LIFE. 5030 03:20:41,028 --> 03:20:42,964 SO I THINK FDA THEY ARE MUCH 5031 03:20:43,030 --> 03:20:46,000 MORE INTERESTED IN 5032 03:20:46,067 --> 03:20:47,435 PATIENT-REPORTED OUTCOMES, THESE 5033 03:20:47,502 --> 03:20:49,937 ARE NOT NECESSARILY VERY 5034 03:20:50,004 --> 03:20:50,805 SCIENTIFIC, JUST FEEL BETTER, 5035 03:20:50,872 --> 03:20:52,607 THEY CAN WALK MORE, SLEEP 5036 03:20:52,673 --> 03:20:53,941 BETTER, EAT WHATEVER THEY WANT. 5037 03:20:54,008 --> 03:20:56,177 THERE ARE ALL KINDS OF 5038 03:20:56,244 --> 03:20:58,479 QUESTIONNAIRES THAT COULD BE 5039 03:20:58,546 --> 03:20:59,914 DEVELOPED TO MEASURE WHAT 5040 03:20:59,981 --> 03:21:02,550 PATIENTS ARE LOOKING FOR AND 5041 03:21:02,617 --> 03:21:03,851 WHETHER YOU IMPROVE THEIR LIFE, 5042 03:21:03,918 --> 03:21:07,455 WHETHER OR NOT YOU CAN MEASURE 5043 03:21:07,522 --> 03:21:09,557 SOMETHING EXTREMELY SPECIFIC. 5044 03:21:09,624 --> 03:21:14,629 SO, WE HAD CLINICAL TRIALS IN 5045 03:21:14,695 --> 03:21:16,330 WHICH ACTUALLY TECHNICALLY ONE 5046 03:21:16,397 --> 03:21:17,532 INTERVENTION WAS MORE SUCCESSFUL 5047 03:21:17,598 --> 03:21:20,935 THAN ANOTHER, WAS A SURGICAL 5048 03:21:21,002 --> 03:21:24,205 TRIAL, RANDOMIZED AND SO FORTH, 5049 03:21:24,272 --> 03:21:28,309 THE INTERVENTION WAS MORE 5050 03:21:28,376 --> 03:21:30,545 SUCCESSFUL YET THE PATIENT 5051 03:21:30,611 --> 03:21:32,647 PREFERRED THE OTHER ONE, THEY 5052 03:21:32,713 --> 03:21:34,515 FELT IT WORKED BETTER FOR THEM. 5053 03:21:34,582 --> 03:21:37,452 I HAVE TO SAY WAS EXERCISE 5054 03:21:37,518 --> 03:21:39,954 VERSUS SURGERY. 5055 03:21:40,021 --> 03:21:41,189 STRANGELY ENOUGH, PEOPLE PREFER 5056 03:21:41,255 --> 03:21:43,891 SURGERY, ALTHOUGH THE RESULT OF 5057 03:21:43,958 --> 03:21:46,327 EXERCISE WAS BETTER BUT THEY HAD 5058 03:21:46,394 --> 03:21:52,233 TO WORK THROUGH PAIN. 5059 03:21:52,300 --> 03:21:54,368 WHAT I'M SAYING, IT'S A THING, 5060 03:21:54,435 --> 03:21:55,236 YOU CAN MEASURE TECHNICAL 5061 03:21:55,303 --> 03:21:57,171 SUCCESS AND QUALITY OF LIFE AS 5062 03:21:57,238 --> 03:21:59,006 PERCEIVED BY THE PATIENT. 5063 03:21:59,073 --> 03:22:00,775 JUST A SUGGESTION. 5064 03:22:00,842 --> 03:22:03,978 >> THERE'S ANOTHER -- OH, SORRY. 5065 03:22:04,045 --> 03:22:06,714 >> PIGGYBACKING OFF THAT, WHEN I 5066 03:22:06,781 --> 03:22:09,050 GO IN FOR MANUAL LYMPH DRAINAGE 5067 03:22:09,116 --> 03:22:12,353 IN THE PAST, I WILL TAKE A 5068 03:22:12,420 --> 03:22:13,788 QUESTIONNAIRE BEFORE TREATMENT 5069 03:22:13,855 --> 03:22:15,089 AND AFTER TREATMENT. 5070 03:22:15,156 --> 03:22:19,393 AND THEN WHEN I HAD SURGERY, 5071 03:22:19,460 --> 03:22:23,297 THERE WAS IMAGING DONE, LIKE ON 5072 03:22:23,364 --> 03:22:24,866 LYMPHATIC FLOW, MEASUREMENTS 5073 03:22:24,932 --> 03:22:25,099 TAKEN. 5074 03:22:25,166 --> 03:22:26,234 THERE IS DATA. 5075 03:22:26,300 --> 03:22:27,568 I CAN ONLY SPEAK TO MY 5076 03:22:27,635 --> 03:22:30,238 EXPERIENCE, I'M NOT SURE IN 5077 03:22:30,304 --> 03:22:32,573 OTHER PLACES, HOW WELL DATA IS 5078 03:22:32,640 --> 03:22:37,512 TAKEN BUT THERE SHOULD BE DATA 5079 03:22:37,578 --> 03:22:40,114 THERE TO KIND OF REPORT ON 5080 03:22:40,181 --> 03:22:40,548 PATIENT OUTCOMES. 5081 03:22:40,615 --> 03:22:42,884 >> I HAVE A PAPER I NEED TO GET 5082 03:22:42,950 --> 03:22:48,589 OUT ON A SURGICAL PROCEDURE BUT 5083 03:22:48,656 --> 03:22:50,758 THERE'S EVIDENCE, IF YOU WANT TO 5084 03:22:50,825 --> 03:22:52,293 LOWER YOUR CELLULITIS RISK, I'VE 5085 03:22:52,360 --> 03:22:54,462 READ THREE TO FIVE STUDIES THAT 5086 03:22:54,529 --> 03:22:58,666 SHOW RISK GOES FROM 25% DOWN TO 5087 03:22:58,733 --> 03:23:02,270 ZERO, SO THERE'S DATA. 5088 03:23:02,336 --> 03:23:03,638 >> I'VE BEEN ASKED TO SAY MINE 5089 03:23:03,704 --> 03:23:04,972 IS THE LAST COMMENT BUT I'M 5090 03:23:05,039 --> 03:23:06,007 GOING TO TAKE IT. 5091 03:23:06,073 --> 03:23:07,542 I DID WANT TO COMMENT. 5092 03:23:07,608 --> 03:23:10,645 THIS IS JUST MAYBE FOR INTEREST 5093 03:23:10,711 --> 03:23:13,781 BUT IN MY CLINICAL TRIAL WORK 5094 03:23:13,848 --> 03:23:16,884 AND MY CLINICAL TRANSLATIONAL 5095 03:23:16,951 --> 03:23:20,087 WORK THERE'S A DIFFERENT PROBLEM 5096 03:23:20,154 --> 03:23:21,088 I PERCEIVE IN LYMPHEDEMA 5097 03:23:21,155 --> 03:23:22,290 PATIENTS THAN AS A CARDIOLOGIST, 5098 03:23:22,356 --> 03:23:22,924 FOR EXAMPLE. 5099 03:23:22,990 --> 03:23:28,963 THAT IS EFFECT OF RESIDUAL 5100 03:23:29,030 --> 03:23:31,165 DISEASE BURDEN. 5101 03:23:31,232 --> 03:23:36,170 YOU REDUCE YOUR OBJECTIVE 5102 03:23:36,237 --> 03:23:37,705 MEASURE BY 20% AND PATIENT IS 5103 03:23:37,772 --> 03:23:39,807 COLORED BY 80% YOU HAVE NOT 5104 03:23:39,874 --> 03:23:40,207 RESOLVED. 5105 03:23:40,274 --> 03:23:41,342 MEASURES OF SUCCESS, IS THAT A 5106 03:23:41,409 --> 03:23:44,178 SUCCESS OR NOT A SUCCESS? 5107 03:23:44,245 --> 03:23:45,913 AND THE OTHER PROBLEM IS SUBSETS 5108 03:23:45,980 --> 03:23:49,784 OF THESE PATIENTS WHERE THEY 5109 03:23:49,850 --> 03:23:56,857 DEVELOP LYMPHATIC DISEASE AS AN 5110 03:23:56,924 --> 03:24:00,695 AFTER EFFECT OF ANOTHER PRIMARY 5111 03:24:00,761 --> 03:24:03,864 DISEASE LIKE CANCER THE 5112 03:24:03,931 --> 03:24:04,665 OVERHANGING EFFECT COLORS THE 5113 03:24:04,732 --> 03:24:05,600 SUCCESS OF THE INTERVENTION. 5114 03:24:05,666 --> 03:24:09,136 WE HAVE TO BE SENSITIVE TO ALL 5115 03:24:09,203 --> 03:24:12,807 THESE THINGS AND AS YOU SAY IT'S 5116 03:24:12,873 --> 03:24:15,176 A HETEROGENEOUS DISEASE 5117 03:24:15,242 --> 03:24:17,478 POPULATION AND HETEROGENEOUS SET 5118 03:24:17,545 --> 03:24:18,946 OF METRICS WE NEED TO USE TO 5119 03:24:19,013 --> 03:24:22,283 DECIDE WHAT WE'RE DOING FOR 5120 03:24:22,350 --> 03:24:22,516 PEOPLE. 5121 03:24:22,583 --> 03:24:23,284 >> THANK YOU. 5122 03:24:23,351 --> 03:24:26,387 I HATE BEING THE BAD GUY AND 5123 03:24:26,454 --> 03:24:32,760 CALLING THESE DISCUSSIONS TO A 5124 03:24:32,827 --> 03:24:33,494 CLOSE. 5125 03:24:33,561 --> 03:24:35,663 I HOPE THAT WAS HELPFUL TO HEAR 5126 03:24:35,730 --> 03:24:37,298 WHAT OTHER COMMITTEES HAVE BEEN 5127 03:24:37,365 --> 03:24:40,801 WORKING ON BUT HAVE A CHANCE TO 5128 03:24:40,868 --> 03:24:43,871 OFFER YOUR BUILDS AND FEEDBACK 5129 03:24:43,938 --> 03:24:45,606 TO TAKE IDEAS AND SEEING 5130 03:24:45,673 --> 03:24:46,173 CONNECTIONS. 5131 03:24:46,240 --> 03:24:48,242 THERE'S A REASON WE'VE BEEN 5132 03:24:48,309 --> 03:24:49,577 PUSHING SO MUCH ON UNDERSTANDING 5133 03:24:49,644 --> 03:24:50,778 WHAT THE CONNECTION POINTS ARE 5134 03:24:50,845 --> 03:24:52,079 BECAUSE AS YOU LOOK THROUGH THE 5135 03:24:52,146 --> 03:24:54,649 NEXT FEW WEEKS AND MONTHS OF 5136 03:24:54,715 --> 03:24:56,917 YOUR WORK WE DO EXPECT 5137 03:24:56,984 --> 03:24:58,519 COLLABORATION ACROSS THE GROUPS. 5138 03:24:58,586 --> 03:25:00,087 AS WE MOVE FORWARD PLEASE THINK 5139 03:25:00,154 --> 03:25:02,189 ABOUT WHAT YOU HEARD TODAY AND 5140 03:25:02,256 --> 03:25:03,791 WHAT OTHER GROUPS YOU NEED TO 5141 03:25:03,858 --> 03:25:05,593 MEET WITH TO FURTHER YOUR WORK. 5142 03:25:05,660 --> 03:25:11,232 I DO WANT TO TALK ABOUT 5143 03:25:11,298 --> 03:25:14,201 CONNECTIONS, FORGIVE ME, THEY 5144 03:25:14,268 --> 03:25:15,936 ARE JAM-PACKED ON POST-IT NOTE. 5145 03:25:16,003 --> 03:25:19,440 I'LL SEE HOW IT GOES. 5146 03:25:19,507 --> 03:25:21,342 IN MANY OF THE COMMITTEES I 5147 03:25:21,409 --> 03:25:23,310 HEARD WE'RE A SMALL COMMITTEE 5148 03:25:23,377 --> 03:25:24,512 BUT. 5149 03:25:24,578 --> 03:25:24,712 RIGHT? 5150 03:25:24,779 --> 03:25:26,814 A THEME OF SMALL COMMITTEES, BIG 5151 03:25:26,881 --> 03:25:27,515 MIGHTY DREAMS. 5152 03:25:27,581 --> 03:25:29,083 I WANT TO ENCOURAGE THIS GROUP 5153 03:25:29,150 --> 03:25:30,885 NOT TO LIMIT YOURSELF TO JUST 5154 03:25:30,951 --> 03:25:33,621 THE PEOPLE ON THIS CALL AND IN 5155 03:25:33,688 --> 03:25:34,288 THIS ROOM. 5156 03:25:34,355 --> 03:25:37,291 WE HAVE METHODS LIKE THE RFI BUT 5157 03:25:37,358 --> 03:25:39,393 SO MANY MORE TO ENGAGE PEOPLE 5158 03:25:39,460 --> 03:25:41,262 FROM THE OUTSIDE WORLD TO HELP 5159 03:25:41,328 --> 03:25:42,563 US PURSUE OUR GOAL. 5160 03:25:42,630 --> 03:25:44,098 PLEASE THINK ABOUT WHO ARE THOSE 5161 03:25:44,165 --> 03:25:44,865 PEOPLE, RIGHT? 5162 03:25:44,932 --> 03:25:46,734 DO WE WANT TO BRING THEM IN JUST 5163 03:25:46,801 --> 03:25:49,036 TO TALK TO YOUR COMMITTEE OR TO 5164 03:25:49,103 --> 03:25:52,206 THE ENTIRE COMMISSION, WHERE ARE 5165 03:25:52,273 --> 03:25:54,308 THOSE OPPORTUNITIES FOR 5166 03:25:54,375 --> 03:25:54,642 LEARNING? 5167 03:25:54,709 --> 03:25:56,010 BRINGING IT BACK TO US IF YOU 5168 03:25:56,077 --> 03:25:58,879 HEARD A GROUP TALKING ABOUT A 5169 03:25:58,946 --> 03:25:59,780 CHALLENGE YOU'RE UNIQUELY 5170 03:25:59,847 --> 03:26:00,748 POSITIONED TO HELP WITH, REACH 5171 03:26:00,815 --> 03:26:03,217 OUT TO THAT COMMITTEE AND OFFER 5172 03:26:03,284 --> 03:26:05,486 YOUR SUPPORT, WHETHER YOUR 5173 03:26:05,553 --> 03:26:07,788 KNOWLEDGE, YOUR EXPERIENCE, YOUR 5174 03:26:07,855 --> 03:26:09,423 CONTACTS, AND LET'S HELP EACH 5175 03:26:09,490 --> 03:26:10,825 OTHER BE SUCCESSFUL. 5176 03:26:10,891 --> 03:26:12,927 ALL RIGHT. 5177 03:26:12,993 --> 03:26:15,763 WE HEARD A LOT OF TIMES. 5178 03:26:15,830 --> 03:26:18,399 FUNDING CAME UP IN MANY GROUPS. 5179 03:26:18,466 --> 03:26:20,768 I DO WANT TO REITERATE PLEASE BE 5180 03:26:20,835 --> 03:26:21,502 THINKING OF COMMITTEES. 5181 03:26:21,569 --> 03:26:24,238 IF YOU HAVE THE APPROPRIATE 5182 03:26:24,305 --> 03:26:25,673 FUNDING WHAT WOULD BE POSSIBLE? 5183 03:26:25,740 --> 03:26:30,478 LET'S START MAKING LISTS OF WHAT 5184 03:26:30,544 --> 03:26:31,479 THAT VISION LOOKS LIKE AND BRING 5185 03:26:31,545 --> 03:26:32,413 IT TO LIFE. 5186 03:26:32,480 --> 03:26:35,182 IF THERE IS SOME SORT OF 5187 03:26:35,249 --> 03:26:36,584 PERMANENT ENTITY PLEASE THINK IN 5188 03:26:36,650 --> 03:26:38,586 YOUR COMMITTEES WHAT WOULD BE 5189 03:26:38,652 --> 03:26:40,688 REQUIRED FOR THAT, FROM THAT 5190 03:26:40,755 --> 03:26:43,057 ENTITY TO HELP YOUR VISION BE 5191 03:26:43,124 --> 03:26:43,457 SUCCESSFUL. 5192 03:26:43,524 --> 03:26:45,359 WE CAN CHOOSE TO RECOMMEND THIS 5193 03:26:45,426 --> 03:26:48,229 ENTITY IS FOCUSED ON SCIENCE AND 5194 03:26:48,295 --> 03:26:49,330 RESEARCH OR HAS BROADER 5195 03:26:49,396 --> 03:26:50,598 AGREEMENT BUT RELATED TO THAT 5196 03:26:50,664 --> 03:26:52,800 WHAT ARE THE MEASURABLE RESULTS 5197 03:26:52,867 --> 03:26:57,938 THAT WILL HOLD THEM ACCOUNTABLE. 5198 03:26:58,005 --> 03:27:00,007 >> WE HEARD ABOUT AWARENESS AND 5199 03:27:00,074 --> 03:27:00,441 MARKETING. 5200 03:27:00,508 --> 03:27:02,409 SO, WHAT DOES THAT LOOK LIKE FOR 5201 03:27:02,476 --> 03:27:04,211 YOUR GROUP, RIGHT? 5202 03:27:04,278 --> 03:27:07,248 WHAT DOES HIGHER LEVEL OF 5203 03:27:07,314 --> 03:27:08,549 AWARENESS UNLOCK AS YOU THINK 5204 03:27:08,616 --> 03:27:10,084 ABOUT WHAT'S POSSIBLE FOR THIS 5205 03:27:10,151 --> 03:27:13,187 SPACE AND DO THINK AT THE 5206 03:27:13,254 --> 03:27:14,155 BROADEST AUDIENCE LEVEL. 5207 03:27:14,221 --> 03:27:17,725 WE HEARD NEED FOR AWARENESS IN 5208 03:27:17,792 --> 03:27:20,828 MARKETING WITH PATIENTS, 5209 03:27:20,895 --> 03:27:22,596 CAREGIVERS, ALSO ACADEMIA, 5210 03:27:22,663 --> 03:27:24,331 INDUSTRY, SCIENTISTS, WE CAN ALL 5211 03:27:24,398 --> 03:27:27,735 THINK ABOUT WHAT'S POSSIBLE 5212 03:27:27,802 --> 03:27:28,335 THERE. 5213 03:27:28,402 --> 03:27:28,669 OKAY. 5214 03:27:28,736 --> 03:27:32,506 WE HEARD A RECOGNITION OF HOW 5215 03:27:32,573 --> 03:27:34,809 DIVERSE THE LD-RELATED SPACE IS. 5216 03:27:34,875 --> 03:27:39,613 AND THERE ARE CHALLENGES AND 5217 03:27:39,680 --> 03:27:40,581 OPPORTUNITIES EMBEDDED. 5218 03:27:40,648 --> 03:27:43,818 HERE WE WANT TO THINK ABOUT IF 5219 03:27:43,884 --> 03:27:45,953 WE WERE ABLE TO REACH THE 5220 03:27:46,020 --> 03:27:47,855 BROADEST SCOPE OF THIS COMMUNITY 5221 03:27:47,922 --> 03:27:49,790 WHAT WOULD THAT ENTAIL AND WHAT 5222 03:27:49,857 --> 03:27:51,859 WOULD THAT UNLOCK FOR US? 5223 03:27:51,926 --> 03:27:54,762 PLEASE BE THINKING ABOUT THAT 5224 03:27:54,829 --> 03:27:57,898 TOO AS YOU MOVE FORWARD. 5225 03:27:57,965 --> 03:28:00,201 NON-TRADITIONAL OUTREACH, GREAT 5226 03:28:00,267 --> 03:28:01,936 STORIES ABOUT BARBERSHOPS, 5227 03:28:02,002 --> 03:28:04,038 AMAZON, FAITH-BASED COMMUNITIES. 5228 03:28:04,104 --> 03:28:07,942 GOOD IDEA TO THINK ABOUT HOW TO 5229 03:28:08,008 --> 03:28:10,644 WE THINK ABOUT OUTSIDE THE BOX 5230 03:28:10,711 --> 03:28:11,912 AND TRADITIONAL ROUTES. 5231 03:28:11,979 --> 03:28:12,947 SEQUENCING BECOMES IMPORTANT. 5232 03:28:13,013 --> 03:28:14,882 THERE WAS A MOMENT WHERE WE WERE 5233 03:28:14,949 --> 03:28:17,651 TALKING ABOUT WHAT DOES HAVING A 5234 03:28:17,718 --> 03:28:19,820 RESEARCH ROADMAP UNLOCK FOR US. 5235 03:28:19,887 --> 03:28:20,788 IF YOU'RE THINKING ABOUT 5236 03:28:20,855 --> 03:28:22,022 ULTIMATELY WE WANT TO DO THIS 5237 03:28:22,089 --> 03:28:24,525 BUT THIS WOULD HAVE TO BE IN 5238 03:28:24,592 --> 03:28:29,029 PLACE FIRST, WILL THAT CONFORM 5239 03:28:29,096 --> 03:28:29,930 OUR RECOMMENDATIONS? 5240 03:28:29,997 --> 03:28:31,532 WE'LL BE ABLE TO DO THAT IF WE 5241 03:28:31,599 --> 03:28:32,666 THINK ACROSS COMMITTEES AND WHAT 5242 03:28:32,733 --> 03:28:36,170 NEEDS TO BE IN PLACES TO HELP US 5243 03:28:36,237 --> 03:28:37,738 BE SUCCESSFUL. 5244 03:28:37,805 --> 03:28:38,205 LASTLY, MEASUREMENT, 5245 03:28:38,272 --> 03:28:38,806 MEASUREMENT, MEASUREMENT. 5246 03:28:38,873 --> 03:28:41,775 WE HEARD FROM THE MEASURABLE 5247 03:28:41,842 --> 03:28:45,346 RESULTS COMMITTEE, THERE WAS A 5248 03:28:45,412 --> 03:28:46,313 JIMINY CRICKET APPEARANCE. 5249 03:28:46,380 --> 03:28:49,617 I'M SURE THAT HAPPENED IN THIS 5250 03:28:49,683 --> 03:28:49,850 MEETING. 5251 03:28:49,917 --> 03:28:52,453 SO, YOU DON'T HAVE TO WAIT FOR 5252 03:28:52,519 --> 03:28:53,654 THE MEASURABLE RESULTS COMMITTEE 5253 03:28:53,721 --> 03:28:54,421 TO REACH OUT. 5254 03:28:54,488 --> 03:28:57,258 IF 5255 03:28:57,324 --> 03:28:59,460 IF YOU AS A COMMITTEE ARE 5256 03:28:59,526 --> 03:29:00,861 THINKING ABOUT RESULTS THAT WILL 5257 03:29:00,928 --> 03:29:03,297 GO INTO YOUR RECOMMENDATION AND 5258 03:29:03,364 --> 03:29:04,531 FIND YOURSELF STUMPED, NOT 5259 03:29:04,598 --> 03:29:06,467 THINKING BROAD ENOUGH, I'M SURE 5260 03:29:06,533 --> 03:29:07,334 THE MEASURABLE RESULTS COMMITTEE 5261 03:29:07,401 --> 03:29:08,402 WOULD APPRECIATE A PHONE CALL 5262 03:29:08,469 --> 03:29:11,338 AND WE CAN BE PART OF THAT 5263 03:29:11,405 --> 03:29:12,706 CONSULTIVE APPROACH AND HELP YOU 5264 03:29:12,773 --> 03:29:17,311 BRAINSTORM AND THINK ABOUT HOW 5265 03:29:17,378 --> 03:29:20,180 WOULD THAT ACTUALLY WORK. 5266 03:29:20,247 --> 03:29:23,450 ANY BUILDS FROM MY ESTEEMED 5267 03:29:23,517 --> 03:29:23,717 COLLEAGUE? 5268 03:29:23,784 --> 03:29:27,755 >> YOU DID A GREAT JOB. 5269 03:29:27,821 --> 03:29:28,422 >> MELANIE? 5270 03:29:28,489 --> 03:29:30,791 >> I THINK THAT HIT ALL THE HIGH 5271 03:29:30,858 --> 03:29:31,191 POINTS. 5272 03:29:31,258 --> 03:29:35,562 >> I THANK MELANIE FOR OUR 5273 03:29:35,629 --> 03:29:36,030 INCREDIBLE NOTES AND 5274 03:29:36,096 --> 03:29:37,431 CONSULTATION ON OUR BREAK. 5275 03:29:37,498 --> 03:29:38,732 I THANK OUR PRESENTERS FOR 5276 03:29:38,799 --> 03:29:39,667 REPRESENTING THEIR GROUPS AND 5277 03:29:39,733 --> 03:29:41,669 THANK ALL OF YOU FOR THE WORK 5278 03:29:41,735 --> 03:29:42,836 THAT WENT INTO THE 5279 03:29:42,903 --> 03:29:44,705 PRESENTATIONS. 5280 03:29:44,772 --> 03:29:46,774 THANK YOU SO MUCH. 5281 03:29:46,840 --> 03:29:48,709 I'LL HAND IT OVER. 5282 03:29:48,776 --> 03:29:50,411 >> THANK YOU. 5283 03:29:50,477 --> 03:29:52,947 THIS WAS THOUGHT PROVOKING, A 5284 03:29:53,013 --> 03:29:55,549 LOT OF GREAT DISCUSSION. 5285 03:29:55,616 --> 03:29:57,851 NOW WE'LL LOOK BACK TO THE 5286 03:29:57,918 --> 03:30:04,825 PREVIOUS COMMISSION AND OPEN FOR 5287 03:30:04,892 --> 03:30:06,493 DECISION OF HISTORICAL 5288 03:30:06,560 --> 03:30:07,594 PERSPECTIVE OF NATIONAL 5289 03:30:07,661 --> 03:30:09,330 COMMISSION ON SLEEP DISORDERS 5290 03:30:09,396 --> 03:30:10,397 RESEARCH AND ESTABLISHMENT OF 5291 03:30:10,464 --> 03:30:11,732 NATIONAL CENTER ON SLEEP 5292 03:30:11,799 --> 03:30:14,068 DISORDERS RESEARCH. 5293 03:30:14,134 --> 03:30:15,970 WE INVITED DR. JAMES KILEY, 5294 03:30:16,036 --> 03:30:19,139 DIRECTOR OF THE DIVISION OF LUNG 5295 03:30:19,206 --> 03:30:20,474 DISEASES, NHLBI. 5296 03:30:20,541 --> 03:30:21,976 AND DR. MARISHKA BROWN JOINING 5297 03:30:22,042 --> 03:30:23,877 US ON ZOOM. 5298 03:30:23,944 --> 03:30:26,413 SHE IS DIRECTOR OF THE NATIONAL 5299 03:30:26,480 --> 03:30:28,148 CENTER ON SLEEP DISORDERS 5300 03:30:28,215 --> 03:30:30,351 RESEARCH, DIVISION OF LUNG 5301 03:30:30,417 --> 03:30:32,219 DISEASE AND NHLBI. 5302 03:30:32,286 --> 03:30:35,055 DR. KILEY? 5303 03:30:35,122 --> 03:30:35,689 >> THANK YOU. 5304 03:30:35,756 --> 03:30:39,693 >> THUNDERSTORM WARNING R. 5305 03:30:39,760 --> 03:30:40,361 >> THANK YOU. 5306 03:30:40,427 --> 03:30:41,462 IT'S WONDERFUL TO BE HERE AND 5307 03:30:41,528 --> 03:30:44,198 SEE THE FRUITS OF THE EFFORTS 5308 03:30:44,264 --> 03:30:45,399 THAT STARTED THIS THING. 5309 03:30:45,466 --> 03:30:48,068 WE WERE PART OF THE GROUP THAT 5310 03:30:48,135 --> 03:30:50,604 WORKED WITH OUR COUNCIL TO 5311 03:30:50,671 --> 03:30:57,511 ESTABLISH THE COMMISSION, IT'S 5312 03:30:57,578 --> 03:31:02,449 GREAT TO SEE YOU, STAN AND 5313 03:31:02,516 --> 03:31:04,218 OTHERS. 5314 03:31:04,284 --> 03:31:07,921 IT'S DEJA VU SOME POINTS KICKED 5315 03:31:07,988 --> 03:31:09,556 AROUND 30+ YEARS AGO WHEN THE 5316 03:31:09,623 --> 03:31:11,425 SLEEP COMMISSION GOT STARTED. 5317 03:31:11,492 --> 03:31:14,161 I THOUGHT, MY GOODNESS, YOU'RE 5318 03:31:14,228 --> 03:31:19,833 GOING TO RATTLE BRAIN CELLS 5319 03:31:19,900 --> 03:31:21,368 HERE, COMING BACK LITERALLY 30 5320 03:31:21,435 --> 03:31:23,437 YEARS WHEN THE SLEEP COMMISSION 5321 03:31:23,504 --> 03:31:25,506 WAS ESTABLISHED AND FRUITS OF 5322 03:31:25,572 --> 03:31:26,173 OUTPUT. 5323 03:31:26,240 --> 03:31:28,909 YOU'VE RECEIVED A COUPLE 5324 03:31:28,976 --> 03:31:29,743 DOCUMENTS, THANKS FOR 5325 03:31:29,810 --> 03:31:30,310 DISTRIBUTING THOSE. 5326 03:31:30,377 --> 03:31:32,846 IF YOU HAD A CHANCE TO SKIM 5327 03:31:32,913 --> 03:31:37,451 THROUGH YOU GOT A GENERAL FEEL 5328 03:31:37,518 --> 03:31:40,421 FOR HOW THINGS EVOLVED IN THE 5329 03:31:40,487 --> 03:31:41,922 EARLY '80s. 5330 03:31:41,989 --> 03:31:46,193 AND HOW THE COMMISSION WAS 5331 03:31:46,260 --> 03:31:48,295 INCREDIBLY INFLUENTIAL IN WHAT 5332 03:31:48,362 --> 03:31:50,631 SUBSEQUENTLY OCCURRED AT THE 5333 03:31:50,697 --> 03:31:52,232 COMPLETION OF ITS WORK. 5334 03:31:52,299 --> 03:31:55,269 LET ME GO BACK A LITTLE BIT AND 5335 03:31:55,335 --> 03:31:56,637 HIT BOTTOM LINE. 5336 03:31:56,703 --> 03:32:00,908 I'M HERE WITHOUT SLIDES AND 5337 03:32:00,974 --> 03:32:01,708 THAT'S DANGEROUS FOR LETTING 5338 03:32:01,775 --> 03:32:03,744 SCIENTISTS COME TO A PODIUM 5339 03:32:03,811 --> 03:32:05,412 WITHOUT SLIDES, THIS COULD GO ON 5340 03:32:05,479 --> 03:32:07,014 AND ON AND ON. 5341 03:32:07,081 --> 03:32:10,717 BUT THAT'S NOT EXACTLY THE POINT 5342 03:32:10,784 --> 03:32:10,918 HERE. 5343 03:32:10,984 --> 03:32:13,954 THE POINT IS THAT THERE ARE A 5344 03:32:14,021 --> 03:32:16,423 FEW THINGS THAT OCCURRED, AND IT 5345 03:32:16,490 --> 03:32:21,161 WAS I THINK REALLY VERY 5346 03:32:21,228 --> 03:32:22,729 PRO-ACTIVE SCIENTIFIC COMMUNITY 5347 03:32:22,796 --> 03:32:26,633 THAT WAS ABLE TO REACH SOME VERY 5348 03:32:26,700 --> 03:32:28,068 INFLUENTIAL MEMBERS OF CONGRESS. 5349 03:32:28,135 --> 03:32:29,837 SO A LOT OF THE STARS, IF YOU 5350 03:32:29,903 --> 03:32:37,678 WANT TO CALL IT THAT, LINED UP. 5351 03:32:37,744 --> 03:32:43,684 WHAT EVOLVED FROM THAT WAS THE 5352 03:32:43,750 --> 03:32:44,184 CONGRESSIONAL DIRECTIVE. 5353 03:32:44,251 --> 03:32:49,156 IT WAS IN THE PUBLIC LAW, 5354 03:32:49,223 --> 03:32:52,693 REFERRING TO SOME DOCUMENTATION 5355 03:32:52,759 --> 03:32:58,031 THAT ESTABLISHED THE COMMISSION, 5356 03:32:58,098 --> 03:32:59,566 INGRAINED INTO PUBLIC HEALTH LAW 5357 03:32:59,633 --> 03:33:01,001 THIS COMMISSION SHOULD EXIST, 5358 03:33:01,068 --> 03:33:02,436 SHOULD BE ESTABLISHED. 5359 03:33:02,503 --> 03:33:04,738 SO, THAT GOT THE WHOLE THING 5360 03:33:04,805 --> 03:33:04,938 GOING. 5361 03:33:05,005 --> 03:33:06,673 THERE WERE TIMES I THINK THAT 5362 03:33:06,740 --> 03:33:09,843 PRECEDED THAT IN TERMS OF HOW TO 5363 03:33:09,910 --> 03:33:13,347 BEST KIND OF CAPTURE THE NEED TO 5364 03:33:13,413 --> 03:33:16,783 GET MORE INFORMATION AROUND 5365 03:33:16,850 --> 03:33:18,619 SLEEP, SLEEP DISORDERS, AND THE 5366 03:33:18,685 --> 03:33:21,889 IMPACT OF SLEEP, NOT ONLY ON 5367 03:33:21,955 --> 03:33:24,625 HEALTH BUT ON OVERALL 5368 03:33:24,691 --> 03:33:25,792 PRODUCTIVITY OF AMERICAN 5369 03:33:25,859 --> 03:33:27,394 SOCIETY, AND SO THERE WERE A LOT 5370 03:33:27,461 --> 03:33:29,329 OF PIECES THAT WENT INTO THIS. 5371 03:33:29,396 --> 03:33:31,098 I'M GOING TO REALLY FAST FORWARD 5372 03:33:31,165 --> 03:33:34,902 HERE BECAUSE I'M GOING TO JUST 5373 03:33:34,968 --> 03:33:36,870 SHOW YOU TWO VOLUMES THAT WERE 5374 03:33:36,937 --> 03:33:40,374 PRODUCED FROM THE COMMISSION 5375 03:33:40,440 --> 03:33:40,607 REPORT. 5376 03:33:40,674 --> 03:33:43,310 THESE YOU CAN I THINK FIND 5377 03:33:43,377 --> 03:33:43,810 ONLINE SOMEWHERE. 5378 03:33:43,877 --> 03:33:47,114 I WAS IN MY OFFICE THIS MORNING 5379 03:33:47,181 --> 03:33:48,482 LOOKING THROUGH THEM AND THE 5380 03:33:48,549 --> 03:33:50,551 PAGES ARE STARTING TO TURN 5381 03:33:50,617 --> 03:33:50,851 YELLOW. 5382 03:33:50,918 --> 03:33:57,391 THESE MAY THE LAST REMNANTS OF 5383 03:33:57,457 --> 03:33:58,559 WHAT EXISTS IN WRITING. 5384 03:33:58,625 --> 03:34:00,928 YOU HAVE A BIG TASK AHEAD OF YOU 5385 03:34:00,994 --> 03:34:03,597 TO PRODUCE SOMETHING OF THIS 5386 03:34:03,664 --> 03:34:05,866 MAGNITUDE BECAUSE ONE OF THE 5387 03:34:05,933 --> 03:34:09,303 THINGS IN THIS 2,000-PAGE VOLUME 5388 03:34:09,369 --> 03:34:11,371 2 OF WAKEUP AMERICAN, A NATIONAL 5389 03:34:11,438 --> 03:34:12,873 SLEEP ALERT, THIS IS ONE OF THE 5390 03:34:12,940 --> 03:34:14,908 REPORTS THAT CAME OUT OF THE 5391 03:34:14,975 --> 03:34:15,275 COMMISSION. 5392 03:34:15,342 --> 03:34:17,177 AND THERE ARE MULTIPLE CHAPTERS 5393 03:34:17,244 --> 03:34:20,881 IN HERE THAT REALLY GO AFTER IN 5394 03:34:20,948 --> 03:34:23,717 VERY, VERY DEEP SPECIFIC 5395 03:34:23,784 --> 03:34:25,152 DETAILS, THE MAGNITUDE OF THE 5396 03:34:25,219 --> 03:34:28,121 PROBLEM, THE STATE OF AFFAIRS, 5397 03:34:28,188 --> 03:34:29,189 KNOWLEDGE BASE BOTH 5398 03:34:29,256 --> 03:34:31,959 SCIENTIFICALLY AS WELL AS IN 5399 03:34:32,025 --> 03:34:34,361 SOME CASES ANECDOTALLY WITH WHAT 5400 03:34:34,428 --> 03:34:38,065 WAS KNOWN AT THAT TIME AROUND 5401 03:34:38,131 --> 03:34:40,167 SLEEP, SLEEP HEALTH, IT WASN'T 5402 03:34:40,234 --> 03:34:42,869 JUST MEDICINE, WASN'T JUST 5403 03:34:42,936 --> 03:34:44,638 HEALTH. 5404 03:34:44,705 --> 03:34:47,708 IT WAS SOCIETAL IMPACT OF 5405 03:34:47,774 --> 03:34:50,444 POTENTIAL SLEEP DISRUPTION, 5406 03:34:50,510 --> 03:34:52,746 SLEEP ABNORMALITIES, SLEEP 5407 03:34:52,813 --> 03:34:54,314 RELATED TO PRODUCTIVITY, RELATED 5408 03:34:54,381 --> 03:34:58,252 TO ACCIDENTS, WHETHER TRAFFIC 5409 03:34:58,318 --> 03:34:58,785 ACCIDENTS, DROWSY DRIVING, 5410 03:34:58,852 --> 03:35:02,689 FALLING ASLEEP AT THE WHEEL, 5411 03:35:02,756 --> 03:35:03,890 EXXON VALDEEZ, CHALLENGER 5412 03:35:03,957 --> 03:35:07,160 ACCIDENT, ALL OF THESE, WHEN YOU 5413 03:35:07,227 --> 03:35:08,395 LOOK BACK AT NTSB REPORTS ALL 5414 03:35:08,462 --> 03:35:10,464 HAD A HUMAN ELEMENT TO THEM. 5415 03:35:10,530 --> 03:35:11,898 THAT HUMAN ELEMENT OFTENTIMES 5416 03:35:11,965 --> 03:35:16,603 POINTED TO FATIGUE OR LACK OF 5417 03:35:16,670 --> 03:35:18,338 SLEEP OR SLEEP DEPRIVATION. 5418 03:35:18,405 --> 03:35:19,973 THIS WAS GIGANTIC IN SCOPE. 5419 03:35:20,040 --> 03:35:23,243 WHAT THE COMMISSION DID AFTER 5420 03:35:23,310 --> 03:35:25,345 RECEIVING ALL THESE REPORTS FROM 5421 03:35:25,412 --> 03:35:26,780 MEMBERS OF THE COMMISSION 5422 03:35:26,847 --> 03:35:29,716 BASICALLY BOIL DOWN INTO WHAT IS 5423 03:35:29,783 --> 03:35:31,918 REALLY VOLUME ONE, THE EXECUTIVE 5424 03:35:31,985 --> 03:35:34,988 SUMMARY OF THE SLEEP COMMISSION, 5425 03:35:35,055 --> 03:35:37,758 AND THAT WAS -- I THINK IS THE 5426 03:35:37,824 --> 03:35:39,926 SEMINAL DOCUMENT THAT REALLY WAS 5427 03:35:39,993 --> 03:35:50,404 WHAT LED TO THE OUTCOME THAT WE 5428 03:35:50,470 --> 03:35:53,507 HAVE SEEN TO DATE. 5429 03:35:53,573 --> 03:35:55,008 GOING BACK IN TIME THE 5430 03:35:55,075 --> 03:35:58,245 COMMISSION WAS APPOINTED BY THE 5431 03:35:58,312 --> 03:36:00,047 CONGRESS. 5432 03:36:00,113 --> 03:36:01,548 THERE WAS A BYPASS FROM ANYTHING 5433 03:36:01,615 --> 03:36:03,250 GOING IN THE GOVERNMENT. 5434 03:36:03,317 --> 03:36:04,985 IT DIDN'T REALLY MATTER WHAT 5435 03:36:05,052 --> 03:36:06,420 AGENCY WAS DOING ANYTHING, 5436 03:36:06,486 --> 03:36:09,289 WHETHER AN AGENCY WAS INTERESTED 5437 03:36:09,356 --> 03:36:10,157 IN THIS OR NOT. 5438 03:36:10,223 --> 03:36:12,426 IT WAS THE CONGRESS THAT DROVE 5439 03:36:12,492 --> 03:36:14,127 IT FULLY AND COMPLETELY. 5440 03:36:14,194 --> 03:36:16,129 SO THE CONGRESS IN SETTING UP 5441 03:36:16,196 --> 03:36:18,198 THE COMMISSION WAS VERY 5442 03:36:18,265 --> 03:36:21,601 DETAILED, IN WHAT IT WANTED, AND 5443 03:36:21,668 --> 03:36:24,705 AGAIN DRIVEN BY THE STATE OF 5444 03:36:24,771 --> 03:36:26,473 KNOWLEDGE, SOME VERY INFLUENTIAL 5445 03:36:26,540 --> 03:36:30,577 HIGHLY RESPECTED MEMBERS OF THE 5446 03:36:30,644 --> 03:36:32,479 SLEEP COMMUNITY, AND THE PUBLIC. 5447 03:36:32,546 --> 03:36:33,780 MEMBERS OF THE PUBLIC, WHETHER 5448 03:36:33,847 --> 03:36:35,749 THEY HAD A SLEEP DISORDER, 5449 03:36:35,816 --> 03:36:36,616 WHETHER IMPACTED, WHETHER THEY 5450 03:36:36,683 --> 03:36:39,252 HAD A FAMILY MEMBER IMPACTED, BY 5451 03:36:39,319 --> 03:36:40,787 SOMETHING RELATED TO SLEEP. 5452 03:36:40,854 --> 03:36:45,058 SO, IT WAS A NICELY ORGANIZED 5453 03:36:45,125 --> 03:36:48,428 GROUP THAT REACHED THE HIGH 5454 03:36:48,495 --> 03:36:50,097 LEVEL POLICYMAKERS, AND THEY 5455 03:36:50,163 --> 03:36:51,765 DROVE WHAT IS THE -- WHAT WAS 5456 03:36:51,832 --> 03:36:53,367 THE CHARGE OF THE COMMISSION. 5457 03:36:53,433 --> 03:36:55,001 I WON'T GO INTO ALL OF THAT, 5458 03:36:55,068 --> 03:36:56,870 JUST TO LEAVE YOU WITH THE FACT 5459 03:36:56,937 --> 03:36:59,373 THAT THERE WERE THREE BASIC 5460 03:36:59,439 --> 03:37:00,841 COMPONENTS THAT THEY WANTED DONE 5461 03:37:00,907 --> 03:37:02,576 IN CONGRESS, THAT IS. 5462 03:37:02,642 --> 03:37:06,380 LOOK AT THE WHOLE STATE OF 5463 03:37:06,446 --> 03:37:08,882 KNOWLEDGE ON INCIDENCE, 5464 03:37:08,949 --> 03:37:09,916 PREVALENCE, MORBIDITY, MORTALITY 5465 03:37:09,983 --> 03:37:11,518 RESULTING FROM SLEEP DISORDERS 5466 03:37:11,585 --> 03:37:14,788 AND SOCIAL AND ECONOMIC IMPACT 5467 03:37:14,855 --> 03:37:15,922 OF THOSE DISORDERS. 5468 03:37:15,989 --> 03:37:21,294 A HUGE CHUNK RIGHT THERE. 5469 03:37:21,361 --> 03:37:23,864 EVALUATE THE PUBLIC/PRIVATE 5470 03:37:23,930 --> 03:37:24,998 FACILITIES AND RESOURCES, 5471 03:37:25,065 --> 03:37:26,166 PERSONNEL, RESEARCH ACTIVITIES, 5472 03:37:26,233 --> 03:37:29,603 LOOKING AT THE DISORDERS 5473 03:37:29,669 --> 03:37:31,671 THEMSELVES, AND THEN FINALLY 5474 03:37:31,738 --> 03:37:33,039 IDENTIFY PROGRAMS THAT WOULD 5475 03:37:33,106 --> 03:37:37,978 LEAD TO IMPROVEMENT IN THE 5476 03:37:38,044 --> 03:37:41,047 MANAGEMENT AND RESEARCH INTO 5477 03:37:41,114 --> 03:37:42,549 SLEEP DISORDERS AND SLEEP 5478 03:37:42,616 --> 03:37:45,585 DEPRIVATION AND WHAT COULD BE 5479 03:37:45,652 --> 03:37:46,052 ACCOMPLISHED. 5480 03:37:46,119 --> 03:37:49,055 THE COMMISSION THEN OVER AN 5481 03:37:49,122 --> 03:37:53,760 18-MONTH PERIOD, IT STARTED IN 5482 03:37:53,827 --> 03:37:56,363 MARCH I THINK OF 1990, AGAIN GO 5483 03:37:56,430 --> 03:37:58,298 UPSTREAM A COUPLE YEARS THAT'S 5484 03:37:58,365 --> 03:37:59,800 WHEN THINGS SORT OF EVOLVED IN 5485 03:37:59,866 --> 03:38:01,301 TERMS OF GETTING THE COMMISSION 5486 03:38:01,368 --> 03:38:04,471 OFF THE GROUND, IT HAD ITS FIRST 5487 03:38:04,538 --> 03:38:09,109 MEETING IN 1990, MET FOR 18 5488 03:38:09,176 --> 03:38:10,010 MONTHS, PRODUCED THESE REPORTS, 5489 03:38:10,076 --> 03:38:12,646 IN SOME WAYS IT WAS A VERY 5490 03:38:12,712 --> 03:38:14,347 MASSIVE EFFORT. 5491 03:38:14,414 --> 03:38:15,849 THEY APPOINTED TEN MEMBERS OF 5492 03:38:15,916 --> 03:38:18,452 THE COMMISSION WITH A NUMBER OF 5493 03:38:18,518 --> 03:38:20,454 EX OFFICIO MEMBERS, REACHED OUT 5494 03:38:20,520 --> 03:38:23,423 TO NIH, TO HELP WITH THE 5495 03:38:23,490 --> 03:38:25,525 LOGISTICS AND COORDINATION OF 5496 03:38:25,592 --> 03:38:27,194 THE EFFORT, LUCKILY THE NATIONAL 5497 03:38:27,260 --> 03:38:28,361 INSTITUTE ON AGING STEPPED 5498 03:38:28,428 --> 03:38:31,865 FORWARD AND TOOK ON THE ROLE OF 5499 03:38:31,932 --> 03:38:33,700 EXECUTIVE SECRETARY, IF YOU 5500 03:38:33,767 --> 03:38:36,303 WILL, OR THE ENTITY THAT WOULD 5501 03:38:36,369 --> 03:38:41,374 COORDINATE THE EFFORT OF THE 5502 03:38:41,441 --> 03:38:42,142 COMMISSION. 5503 03:38:42,209 --> 03:38:46,613 AT THE END THE COMMISSION MADE 5504 03:38:46,680 --> 03:38:50,784 SIX RECOMMENDATIONS, SO I'M FAST 5505 03:38:50,851 --> 03:38:52,886 FORWARDING HERE, FIRST TO 5506 03:38:52,953 --> 03:38:54,421 ESTABLISH A NATIONAL CENTER, AND 5507 03:38:54,488 --> 03:38:56,923 AGAIN YOU CAN LOOK AT THE FINE 5508 03:38:56,990 --> 03:39:00,627 POINTS, BUT THEY FELT THAT THE 5509 03:39:00,694 --> 03:39:02,929 COMMISSION REALLY IN DOING ITS 5510 03:39:02,996 --> 03:39:04,631 JOB, LOOKING OVER ALL OF THE 5511 03:39:04,698 --> 03:39:06,199 FACTS AND DETAILS AND 5512 03:39:06,266 --> 03:39:07,667 INFORMATION COLLECTED, THERE WAS 5513 03:39:07,734 --> 03:39:09,836 NO ONE SINGLE ENTITY THAT COULD 5514 03:39:09,903 --> 03:39:13,406 COORDINATE THE EFFORTS, NOT ONLY 5515 03:39:13,473 --> 03:39:14,908 IN REGARDS TO MEDICAL HEALTH 5516 03:39:14,975 --> 03:39:17,277 RESEARCH BUT ALSO THE BIGGER 5517 03:39:17,344 --> 03:39:19,646 PICTURE ACROSS THE SOCIETAL ROLE 5518 03:39:19,713 --> 03:39:21,414 THAT SLEEP CENTER COULD PLAY. 5519 03:39:21,481 --> 03:39:26,219 AND IN SO DOING, IT NOT ONLY 5520 03:39:26,286 --> 03:39:27,587 INVOLVED HEALTH-RELATED 5521 03:39:27,654 --> 03:39:28,221 AGENCIES, DEPARTMENTS OF HEALTH 5522 03:39:28,288 --> 03:39:29,289 AND HUMAN SERVICES, BUT ALL 5523 03:39:29,356 --> 03:39:31,491 GOVERNMENT AGENCIES. 5524 03:39:31,558 --> 03:39:33,093 SO THE COMMISSION RECOMMENDED 5525 03:39:33,159 --> 03:39:38,665 THE CONGRESS GO TO THE SECRETARY 5526 03:39:38,732 --> 03:39:40,767 OF HEALTH AND HUMAN SERVICES AND 5527 03:39:40,834 --> 03:39:42,636 HAVE THAT INDIVIDUAL, THE 5528 03:39:42,702 --> 03:39:44,771 SECRETARY, PRODUCE AN EDICT TO 5529 03:39:44,838 --> 03:39:47,674 THOSE AGENCIES THAT FELL WITHIN 5530 03:39:47,741 --> 03:39:51,878 DHHS TO THEN IMPLEMENT ASPECTS 5531 03:39:51,945 --> 03:39:53,547 OF THE COMMISSION, AND WHAT FELL 5532 03:39:53,613 --> 03:39:55,749 TO NIH WAS THE FIRST ELEMENT 5533 03:39:55,815 --> 03:39:57,517 WHICH WAS TO FIGURE OUT WHETHER 5534 03:39:57,584 --> 03:39:59,152 THERE WAS AN ENTITY WITHIN NIH 5535 03:39:59,219 --> 03:40:04,224 THAT COULD TAKE ON THIS ROLE OF 5536 03:40:04,291 --> 03:40:06,226 HOUSING THE NATIONAL CENTER ON 5537 03:40:06,293 --> 03:40:06,826 SLEEP DISORDERS RESEARCH. 5538 03:40:06,893 --> 03:40:09,696 THERE WERE A NUMBER OF OTHER 5539 03:40:09,763 --> 03:40:11,531 RECOMMENDATIONS, MOSTLY AROUND 5540 03:40:11,598 --> 03:40:12,832 STRENGTHENING ONGOING PROGRAMS, 5541 03:40:12,899 --> 03:40:17,837 NOT JUST AT NIH AND DHHS BUT 5542 03:40:17,904 --> 03:40:18,805 ACROSS THE GOVERNMENT, 5543 03:40:18,872 --> 03:40:20,307 DEPARTMENT OF DEFENSE, VETERANS 5544 03:40:20,373 --> 03:40:21,641 AFFAIRS, ET CETERA. 5545 03:40:21,708 --> 03:40:23,510 THE THIRD WAS ACCOUNTABILITY. 5546 03:40:23,577 --> 03:40:25,245 THERE WAS SOME DESIRE FOR THE 5547 03:40:25,312 --> 03:40:26,980 CONGRESS TO WANT TO KNOW THAT 5548 03:40:27,047 --> 03:40:29,382 WITH ALL THIS IN PLACE THAT THE 5549 03:40:29,449 --> 03:40:31,551 AGENCIES OF THE GOVERNMENT WERE 5550 03:40:31,618 --> 03:40:32,986 ACCOUNTABLE TO THE CONGRESS IN 5551 03:40:33,053 --> 03:40:35,855 TERMS OF OUTPUT AND WHAT DID WE 5552 03:40:35,922 --> 03:40:36,923 DO WITH THAT INFORMATION, HOW 5553 03:40:36,990 --> 03:40:38,792 DID WE IMPLEMENT IT, HOW DID WE 5554 03:40:38,858 --> 03:40:41,161 THEN TAKE IT TO IMPROVE HEALTH 5555 03:40:41,227 --> 03:40:49,970 AND TO ALSO IMPROVE THE SOCIETAL 5556 03:40:50,036 --> 03:40:50,236 ISSUES. 5557 03:40:50,303 --> 03:40:51,204 EACH RECOMMENDATION CARRIED A 5558 03:40:51,271 --> 03:40:52,372 PRICE TAG, NOT ONLY DID THE 5559 03:40:52,439 --> 03:40:55,442 COMMISSION SAY THIS IS WHAT WE 5560 03:40:55,508 --> 03:40:58,178 FOUND, THIS IS WHAT'S IMPORTANT, 5561 03:40:58,244 --> 03:41:00,614 HERE IS WHAT WE FOUND WHEN WE 5562 03:41:00,680 --> 03:41:05,652 DID THE COST OF ANALYSIS TO 5563 03:41:05,719 --> 03:41:07,354 IMPLEMENT THESE INDIVIDUAL 5564 03:41:07,420 --> 03:41:08,922 RECOMMENDATIONS, THE OTHER TWO 5565 03:41:08,989 --> 03:41:11,191 ARE CRITICAL IN THAT THEY BOTH 5566 03:41:11,257 --> 03:41:12,192 DEALT WITH EDUCATION. 5567 03:41:12,258 --> 03:41:14,027 FIRST DEALT WITH EDUCATION OF 5568 03:41:14,094 --> 03:41:15,128 HEALTH CARE PROFESSIONALS, I 5569 03:41:15,195 --> 03:41:16,096 HEARD SOMEBODY SAY THEY PICKED 5570 03:41:16,162 --> 03:41:19,599 UP A BOOK AND NOT A SINGLE WORD 5571 03:41:19,666 --> 03:41:21,534 ON LYMPHATICS. 5572 03:41:21,601 --> 03:41:22,736 WELL, BACK IN 1980 YOU COULD 5573 03:41:22,802 --> 03:41:24,971 HAVE SAID THE SAME THING ABOUT 5574 03:41:25,038 --> 03:41:28,808 SLEEP AND SLEEP DISORDERS, NOT 5575 03:41:28,875 --> 03:41:30,043 MUCH TEACHING IN MEDICAL 5576 03:41:30,110 --> 03:41:32,078 SCHOOLS, NOT MUCH IN THE WAY OF 5577 03:41:32,145 --> 03:41:33,179 EDUCATING THOSE WHO SHOULD BE 5578 03:41:33,246 --> 03:41:37,183 AWARE OF KNOWLEDGE OF DISORDERS. 5579 03:41:37,250 --> 03:41:40,053 AND THEN HEALTH EDUCATION WAS 5580 03:41:40,120 --> 03:41:41,888 BIG. 5581 03:41:41,955 --> 03:41:43,056 FINAL WAS EDUCATE AMERICA. 5582 03:41:43,123 --> 03:41:45,125 GET PEOPLE TO UNDERSTAND WHAT IT 5583 03:41:45,191 --> 03:41:47,060 IS THAT WE'RE TALKING ABOUT AND 5584 03:41:47,127 --> 03:41:50,230 HOW THINGS COULD BE PREVENTED, 5585 03:41:50,296 --> 03:41:53,366 HOW THINGS COULD BE IMPROVED IN 5586 03:41:53,433 --> 03:41:58,204 YOUR OVERALL LIFE IF YOU WERE 5587 03:41:58,271 --> 03:42:00,006 JUST TO SOME OF THE 5588 03:42:00,073 --> 03:42:01,274 RECOMMENDATIONS THE COMMISSION 5589 03:42:01,341 --> 03:42:01,875 OUTLINED. 5590 03:42:01,941 --> 03:42:07,514 ALL OF THIS CAME ABOUT, CAME 5591 03:42:07,580 --> 03:42:09,282 WITH PRICE TAGS. 5592 03:42:09,349 --> 03:42:12,452 I'LL WRAP UP, THE COMMISSION 5593 03:42:12,519 --> 03:42:16,389 PART, TO LEAVE TIME FOR MARISHKA 5594 03:42:16,456 --> 03:42:21,895 TO TELL YOU HOW THE NIH TOOK ON 5595 03:42:21,961 --> 03:42:25,365 THE COMMISSION RECOMMENDATIONS 5596 03:42:25,432 --> 03:42:27,333 IN A VERY COMPREHENSIVE WAY BUT 5597 03:42:27,400 --> 03:42:33,540 IN CLOSING I WILL JUST SAY THAT 5598 03:42:33,606 --> 03:42:35,108 THIS COMMISSION DID A HEROIC 5599 03:42:35,175 --> 03:42:36,810 AMOUNT OF WORK NOT BECAUSE I WAS 5600 03:42:36,876 --> 03:42:38,812 PART OF IT, THAT HAS NOTHING TO 5601 03:42:38,878 --> 03:42:40,447 DO WITH IT FRANKLY. 5602 03:42:40,513 --> 03:42:45,952 IT WAS A MASSIVE EFFORT BECAUSE 5603 03:42:46,019 --> 03:42:48,088 THEY WENT ACROSS THE COUNTRY AND 5604 03:42:48,154 --> 03:42:50,557 THEY HELD PUBLIC MEETINGS, 5605 03:42:50,623 --> 03:42:51,524 WORKSHOPS, EIGHT REGIONAL 5606 03:42:51,591 --> 03:42:53,026 MEETINGS THAT WERE ATTENDED BY 5607 03:42:53,093 --> 03:42:59,265 LOTS OF PEOPLE SO IT WAS A 5608 03:42:59,332 --> 03:43:00,734 GROUNDSWELL WHERE THIS WAS 5609 03:43:00,800 --> 03:43:03,703 AFFECTING A LOT OF PEOPLE. 5610 03:43:03,770 --> 03:43:04,838 CONGRESS REACTS, AS YOU KNOW, 5611 03:43:04,904 --> 03:43:07,373 THE THE MORE VOICES YOU HEAR, 5612 03:43:07,440 --> 03:43:09,142 THE MORE YOU WANT TO DIG IN AND 5613 03:43:09,209 --> 03:43:10,610 SEE WHAT'S GOING ON HERE AND 5614 03:43:10,677 --> 03:43:13,980 WHETHER THERE'S A NEED TO ACT. 5615 03:43:14,047 --> 03:43:19,519 I THINK WHAT WAS REALLY 5616 03:43:19,586 --> 03:43:24,023 GRATIFYING IN MANY WAYS TO SEE 5617 03:43:24,090 --> 03:43:25,959 HOW THE PUBLIC RESPONDED, HOW 5618 03:43:26,025 --> 03:43:27,594 MEDICAL RESEARCH AND THE NIH 5619 03:43:27,660 --> 03:43:34,634 RESPONDED IN TERMS OF TAKING A 5620 03:43:34,701 --> 03:43:38,505 VERY AGGRESSIVE LEAD ROLE. 5621 03:43:38,571 --> 03:43:39,339 RECOMMENDATIONS FOR THE CENTER, 5622 03:43:39,405 --> 03:43:44,277 TWO YEARS BEFORE THE CREATION OF 5623 03:43:44,344 --> 03:43:47,547 THE SLEEP CENTER THE CONGRESS 5624 03:43:47,614 --> 03:43:50,283 ESTABLISHED A NATIONAL CENTER ON 5625 03:43:50,350 --> 03:43:54,120 REHABILITATION RESEARCH, ANOTHER 5626 03:43:54,187 --> 03:43:55,955 ACT OF CONGRESS DONE BY 5627 03:43:56,022 --> 03:43:58,424 INSERTING A CENTER WITHIN AN 5628 03:43:58,491 --> 03:43:59,793 INSTITUTE AT THE NIH. 5629 03:43:59,859 --> 03:44:01,561 WHAT THE COMMISSION DID IN THE 5630 03:44:01,628 --> 03:44:06,466 EARLY DAYS WAS DRIVE IT DOWN A 5631 03:44:06,533 --> 03:44:08,868 PATH THAT WANTED AN INSTITUTE. 5632 03:44:08,935 --> 03:44:11,404 SO THEY WERE VERY, VERY FORCEFUL 5633 03:44:11,471 --> 03:44:12,572 AND CONVINCED THAT THE WAY 5634 03:44:12,639 --> 03:44:16,075 FORWARD WAS TO HAVE A NATIONAL 5635 03:44:16,142 --> 03:44:20,246 INSTITUTE ON SLEEP AND SLEEP 5636 03:44:20,313 --> 03:44:20,647 RESEARCH. 5637 03:44:20,713 --> 03:44:22,115 I THINK OVER TIME THEY WERE 5638 03:44:22,182 --> 03:44:22,949 CONVINCED PERHAPS THERE WERE 5639 03:44:23,016 --> 03:44:25,819 OTHER WAYS TO DO IT THAT MIGHT 5640 03:44:25,885 --> 03:44:27,153 BE JUST AS EFFECTIVE, THE REHAB 5641 03:44:27,220 --> 03:44:35,995 CENTER WAS JUST GETTING ITS FEED 5642 03:44:36,062 --> 03:44:37,831 UNDER ITSELF, THE LEGISLATION 5643 03:44:37,897 --> 03:44:39,833 WAS ATTRACTIVE TO THE COMMISSION 5644 03:44:39,899 --> 03:44:42,035 AND TO OTHERS. 5645 03:44:42,101 --> 03:44:45,071 SO WHAT ENDED UP HAPPENING IS 5646 03:44:45,138 --> 03:44:46,406 RATHER THAN RECOMMENDING AN 5647 03:44:46,472 --> 03:44:52,779 INSTITUTE THEY RECOMMENDED THE 5648 03:44:52,846 --> 03:44:54,714 CENTER AND LEFT IT TO NIH, 5649 03:44:54,781 --> 03:44:56,049 TRICKLED TO THE DIRECTOR WHO PUT 5650 03:44:56,115 --> 03:45:00,453 OUT A CALL TO NIH INSTITUTES AND 5651 03:45:00,520 --> 03:45:02,889 SAID ANYBODY HERE THINK THEY CAN 5652 03:45:02,956 --> 03:45:03,957 ANNUAL THIS? 5653 03:45:04,023 --> 03:45:07,861 AT THE TIME, THE BIGGEST SLEEP 5654 03:45:07,927 --> 03:45:09,529 DISORDERS THAT EXISTED THAT WE 5655 03:45:09,596 --> 03:45:12,232 KNEW ABOUT, THERE WAS DATA, IT 5656 03:45:12,298 --> 03:45:15,735 WAS PRETTY ESTABLISHED, WAS 5657 03:45:15,802 --> 03:45:17,437 OBSTRUCTIVE SLEEP APNEA. 5658 03:45:17,503 --> 03:45:22,909 AND SO DR. HEALEY, THE DIRECTOR 5659 03:45:22,976 --> 03:45:24,677 OF THE INSTITUTES, I CAN RELIFE 5660 03:45:24,744 --> 03:45:26,813 LIKE IT WAS YESTERDAY, CALLED 5661 03:45:26,880 --> 03:45:29,649 THE INSTITUTE DIRECTOR AT NHLBI, 5662 03:45:29,716 --> 03:45:31,718 I WAS ALSO DRAGGED IN, TO TALK 5663 03:45:31,784 --> 03:45:35,488 ABOUT WHAT WE KNOW ABOUT THIS 5664 03:45:35,555 --> 03:45:36,222 DISEASE. 5665 03:45:36,289 --> 03:45:38,324 AND THE BOTTOM LINE WAS NHLBI, 5666 03:45:38,391 --> 03:45:41,661 WE THINK YOU'RE THE RIGHT 5667 03:45:41,728 --> 03:45:44,063 INSTITUTE FOR THIS. 5668 03:45:44,130 --> 03:45:48,234 I FELT NO OTHER INSTITUTE STOOD 5669 03:45:48,301 --> 03:45:52,338 UP BUT I THE OPPOSITE, EVERYBODY 5670 03:45:52,405 --> 03:45:54,040 STOOD UP AND WE WERE THE BEST. 5671 03:45:54,107 --> 03:45:56,242 BUT THAT WAS THE NIH DIRECTOR'S 5672 03:45:56,309 --> 03:46:00,280 DECISION AND OUR INSTITUTE 5673 03:46:00,346 --> 03:46:05,551 DIRECTOR TOOK THAT ON AND TOOK 5674 03:46:05,618 --> 03:46:07,320 ON ALL THE ELEMENTS OF WHAT 5675 03:46:07,387 --> 03:46:09,422 ENDED UP BEING THE PUBLIC LAW 5676 03:46:09,489 --> 03:46:10,623 THAT ESTABLISHED THE SLEEP 5677 03:46:10,690 --> 03:46:13,960 CENTER, AGAIN THROUGH CONGRESS. 5678 03:46:14,027 --> 03:46:16,896 SO THIS WAS AN ACT, IT'S IN OUR 5679 03:46:16,963 --> 03:46:18,498 STATUTE NOW. 5680 03:46:18,564 --> 03:46:21,334 THIS IS PART OF THE FABRIC OF 5681 03:46:21,401 --> 03:46:22,669 THE NIH. 5682 03:46:22,735 --> 03:46:27,040 IT EXISTS BECAUSE OF THE PUBLIC 5683 03:46:27,106 --> 03:46:30,076 LAW AND AS THE SLEEP COMMISSION 5684 03:46:30,143 --> 03:46:32,111 HAD, DISCRETE ELEMENTS OF IT 5685 03:46:32,178 --> 03:46:36,215 THAT IT WAS TO DO XYZ, TO HAVE 5686 03:46:36,282 --> 03:46:38,251 THIS STRUCTURE, TO DO THE 5687 03:46:38,318 --> 03:46:39,719 FOLLOWING. 5688 03:46:39,786 --> 03:46:42,922 SO THERE WAS NO AMBIGUITY ABOUT 5689 03:46:42,989 --> 03:46:46,259 WHAT WAS THE ROLE OF THE SLEEP 5690 03:46:46,326 --> 03:46:46,492 CENTER. 5691 03:46:46,559 --> 03:46:48,661 SO, I HOPE I'VE GIVEN YOU A 5692 03:46:48,728 --> 03:46:51,965 LITTLE BIT OF HISTORICAL 5693 03:46:52,031 --> 03:46:53,533 PERSPECTIVE WHAT PRECEDED THE 5694 03:46:53,599 --> 03:46:57,804 COMMISSION, HOW THE COMMISSION 5695 03:46:57,870 --> 03:46:59,973 GOT ITS START, WHAT HAPPENED 5696 03:47:00,039 --> 03:47:01,941 DURING THAT 18-MONTH PERIOD OF 5697 03:47:02,008 --> 03:47:04,243 COLLECTING DATA AND MAKING THE 5698 03:47:04,310 --> 03:47:07,613 CASE, PRODUCING THE DOCUMENTS 5699 03:47:07,680 --> 03:47:10,249 THAT WERE CREDIBLE TO THOSE BACK 5700 03:47:10,316 --> 03:47:12,452 IN THE EARLY 90s IN TERMS OF 5701 03:47:12,518 --> 03:47:14,053 NEXT STEPS, AND PUTTING AN 5702 03:47:14,120 --> 03:47:16,489 ENTITY IN PLACE WITHIN THE NIH 5703 03:47:16,556 --> 03:47:19,892 THAT WAS DEALING WITH NOT ONLY 5704 03:47:19,959 --> 03:47:21,461 THE RESEARCH, EDUCATION, 5705 03:47:21,527 --> 03:47:23,262 COORDINATION, BUT ALSO 5706 03:47:23,329 --> 03:47:23,796 ACCOUNTABILITY. 5707 03:47:23,863 --> 03:47:25,698 AND I THINK, I HOPE, THAT YOU 5708 03:47:25,765 --> 03:47:27,467 WILL SEE AND MAYBE AGREE WITH US 5709 03:47:27,533 --> 03:47:30,536 THAT THIS HAS BEEN A VERY 5710 03:47:30,603 --> 03:47:33,139 SUCCESSFUL UNDERTAKING. 5711 03:47:33,206 --> 03:47:35,641 WE JUST CELEBRATED THE 25th 5712 03:47:35,708 --> 03:47:38,111 ANNIVERSARY OF THE SLEEP CENTER 5713 03:47:38,177 --> 03:47:38,978 IN 2019. 5714 03:47:39,045 --> 03:47:42,015 AND I PROVIDED YOU WITH AN 5715 03:47:42,081 --> 03:47:44,117 EDITORIAL THAT I WROTE WITH THE 5716 03:47:44,183 --> 03:47:45,485 PREVIOUS DIRECTOR OF THE SLEEP 5717 03:47:45,551 --> 03:47:49,222 CENTER AS WELL AS OUR CURRENT 5718 03:47:49,288 --> 03:47:50,323 DIRECTOR, DR. GIBBONS, ON 5719 03:47:50,390 --> 03:47:52,725 PROGRESS THAT WE HAVE MADE OVER 5720 03:47:52,792 --> 03:47:56,029 THAT 25 YEARS AND THE PROSPECTS 5721 03:47:56,095 --> 03:47:59,132 FOR WHAT'S TO COME AS WE STAY ON 5722 03:47:59,198 --> 03:48:00,967 THE TRAJECTORY THAT GOT STARTED 5723 03:48:01,034 --> 03:48:01,934 SEVERAL DECADES AGO. 5724 03:48:02,001 --> 03:48:05,438 I'LL STOP HERE AND I'M GOING TO 5725 03:48:05,505 --> 03:48:06,906 GIVE THE PODIUM TO MARISHKA 5726 03:48:06,973 --> 03:48:08,908 BROWN AND SHE WILL THEN -- SHE'S 5727 03:48:08,975 --> 03:48:10,243 THE CURRENT DIRECTOR OF THE 5728 03:48:10,309 --> 03:48:12,712 NATIONAL CENTER ON SLEEP 5729 03:48:12,779 --> 03:48:15,381 DISORDERS RESEARCH AT NHLBI, AND 5730 03:48:15,448 --> 03:48:18,184 I THINK WILL TELL YOU THE TALE 5731 03:48:18,251 --> 03:48:21,421 HOW THE CENTER IS FUNCTIONING 5732 03:48:21,487 --> 03:48:22,789 NOW AND SOME THINGS THEY ARE 5733 03:48:22,855 --> 03:48:25,358 WORKING ON, HOW THEY ARE REALLY 5734 03:48:25,425 --> 03:48:28,661 VERY MUCH MEETING THE INTENT OF 5735 03:48:28,728 --> 03:48:29,762 THE LEGISLATION AND GOALS AND WE 5736 03:48:29,829 --> 03:48:33,566 CAN BE VERY PROUD OF THE FACT 5737 03:48:33,633 --> 03:48:35,435 THAT WE'VE IMPROVED THE HEALTH 5738 03:48:35,501 --> 03:48:41,374 OF THIS COUNTRY WHEN IT COMES TO 5739 03:48:41,441 --> 03:48:44,844 SLEEP DEPRIVATION, DISORDERS AND 5740 03:48:44,911 --> 03:48:47,246 ABNORMALITIES, SO MUCH MORE 5741 03:48:47,313 --> 03:48:48,414 ADVANCED THAN MY WILDEST DREAMS 5742 03:48:48,481 --> 03:48:49,115 35 YEARS AGO. 5743 03:48:49,182 --> 03:48:50,750 GREAT TO HAVE A CHANCE TO TALK 5744 03:48:50,817 --> 03:48:52,051 AND I HOPE YOU ENJOY THE 5745 03:48:52,118 --> 03:48:53,619 PROGRESS FROM THE SLEEP CENTER. 5746 03:48:53,686 --> 03:48:55,455 NOW, ONE MORE THING BEFORE I 5747 03:48:55,521 --> 03:48:56,122 LEAVE. 5748 03:48:56,189 --> 03:48:59,125 ONE OF THE REMNANTS, I CAN'T 5749 03:48:59,192 --> 03:49:00,960 COME TO A MEETING WITH NO SLIDES 5750 03:49:01,027 --> 03:49:03,029 AND NOTHING, RIGHT? 5751 03:49:03,096 --> 03:49:04,730 ONE OF THE REMNANTS THAT WE 5752 03:49:04,797 --> 03:49:06,432 UNDERTOOK WHEN I WAS DIRECTOR OF 5753 03:49:06,499 --> 03:49:09,268 THE SLEEP CENTER WAS PUBLIC 5754 03:49:09,335 --> 03:49:11,804 HEALTH AWARENESS CAMPAIGN. 5755 03:49:11,871 --> 03:49:13,773 I WAS IN INDIANA FOR A MEETING 5756 03:49:13,840 --> 03:49:17,610 AS DIRECTOR OF THE CENTER, AND I 5757 03:49:17,677 --> 03:49:20,012 WAS APPROACHED BY JIM HENSON, 5758 03:49:20,079 --> 03:49:25,485 WHO AS YOU KNOW IS THE ARTIST 5759 03:49:25,551 --> 03:49:28,988 WHO CREATED GARFIELD THE CAT. 5760 03:49:29,055 --> 03:49:32,258 WE HAD A MAYBE IMPROMPTU 5761 03:49:32,325 --> 03:49:33,059 TWO-HOUR CONVERSATION, SITTING 5762 03:49:33,126 --> 03:49:36,129 IN A BACK ROOM AT A CONFERENCE 5763 03:49:36,195 --> 03:49:38,631 CENTER, AND HE WAS SO EXCITED 5764 03:49:38,698 --> 03:49:41,033 ABOUT THE POSSIBILITY THAT WE 5765 03:49:41,100 --> 03:49:43,102 CREATED A PARTNERSHIP WHEN 5766 03:49:43,169 --> 03:49:47,273 NHLBI, THE SLEEP CENTER, AND HIS 5767 03:49:47,340 --> 03:49:51,110 COMPANY TO MAKE GARFIELD THE 5768 03:49:51,177 --> 03:49:52,378 OFFICIAL SPOKESPERSON WHO THE, 5769 03:49:52,445 --> 03:49:55,848 AS YOU KNOW, WHO SLEEPS A LOT, 5770 03:49:55,915 --> 03:49:56,215 RIGHT? 5771 03:49:56,282 --> 03:49:58,151 GARFIELD BECAME THE STAR SLEEPER 5772 03:49:58,217 --> 03:50:03,256 AND WE HAD A HUGE AMOUNT OF 5773 03:50:03,322 --> 03:50:04,357 PUBLICITY AND ACTIVITY, NOT ONLY 5774 03:50:04,423 --> 03:50:07,126 ALL THE, YOU KNOW, KIND OF 5775 03:50:07,193 --> 03:50:09,162 THINGS YOU DO BUT JIM WAS SUCH A 5776 03:50:09,228 --> 03:50:11,931 WONDERFUL PERSON TO WORK WITH. 5777 03:50:11,998 --> 03:50:16,769 HAD HE REGULAR SUNDAY IN THE 5778 03:50:16,836 --> 03:50:22,141 "TIMES," "NEW YORK TIMES," HIS 5779 03:50:22,208 --> 03:50:22,842 CARTOON WOULD PORTRAY GARFIELD 5780 03:50:22,909 --> 03:50:24,143 CHARACTERIZED AROUND THE GOALS 5781 03:50:24,210 --> 03:50:25,611 OF THE CENTER, FOR TWO OR THREE 5782 03:50:25,678 --> 03:50:28,548 YEARS OR SO WITH REPEATED THINGS 5783 03:50:28,614 --> 03:50:33,586 TO GET AWARENESS OF THE PUBLIC 5784 03:50:33,653 --> 03:50:35,154 AND TRY TO TARGET THE PART OF 5785 03:50:35,221 --> 03:50:38,090 THE PUBLIC THAT LOOKS AT THESE 5786 03:50:38,157 --> 03:50:40,059 COMICS AND REALLY BELIEVES THAT 5787 03:50:40,126 --> 03:50:41,060 THERE ARE THINGS THAT TELL A 5788 03:50:41,127 --> 03:50:42,695 STORY AND YOU CAN LEARN A LOT 5789 03:50:42,762 --> 03:50:43,896 FROM THEM. 5790 03:50:43,963 --> 03:50:45,431 HE DID A WONDERFUL JOB. 5791 03:50:45,498 --> 03:50:48,834 THIS IS THE LAST OF MY MOMENTUMS 5792 03:50:48,901 --> 03:50:50,369 FROM THE SLEEP CENTER, I'LL PASS 5793 03:50:50,436 --> 03:50:51,070 IT AROUND. 5794 03:50:51,137 --> 03:50:52,572 YOU CAN SEE IT. 5795 03:50:52,638 --> 03:50:54,540 THERE WERE TONS OF THESE THINGS, 5796 03:50:54,607 --> 03:50:57,176 ALL KINDS OF THINGS, LENORA'S 5797 03:50:57,243 --> 03:50:59,011 GROUP, THE PREVIOUS ITERATION OF 5798 03:50:59,078 --> 03:51:00,446 THIS WAS VERY INSTRUMENTAL IN 5799 03:51:00,513 --> 03:51:02,215 MAKING IT WORK BECAUSE THEY WERE 5800 03:51:02,281 --> 03:51:04,016 THE ONES THAT DROVE THE 5801 03:51:04,083 --> 03:51:06,052 EDUCATIONAL COMPONENT OF THE 5802 03:51:06,118 --> 03:51:08,554 CENTER AS THEY DO NOW BUT THIS 5803 03:51:08,621 --> 03:51:13,826 WAS SUCH A FUN PROJECT, AN 5804 03:51:13,893 --> 03:51:15,328 EFFORT THAT EVERYBODY BONDED 5805 03:51:15,394 --> 03:51:16,729 WITH AND HAD A LOT OF FUN. 5806 03:51:16,796 --> 03:51:19,465 AT THE END WE WERE ABLE TO 5807 03:51:19,532 --> 03:51:22,168 MEASURE DID WE GET AWARENESS UP. 5808 03:51:22,235 --> 03:51:24,537 CLEARLY WE NAUGHT IN PLACE WHEN 5809 03:51:24,604 --> 03:51:25,972 WE STARTED, IT WAS VERY UNIQUE 5810 03:51:26,038 --> 03:51:27,873 TO SEE HOW MANY MORE PEOPLE KNEW 5811 03:51:27,940 --> 03:51:33,446 SOMETHING ABOUT SLEEP AS A 5812 03:51:33,512 --> 03:51:35,915 RESULT OF THE GARFIELD 5813 03:51:35,982 --> 03:51:37,717 EDUCATIONAL PROBLEM. 5814 03:51:37,783 --> 03:51:48,361 >> WE NEED A GARFIELD FOR THIS. 5815 03:51:48,594 --> 03:51:50,830 >> DR. BROWN, THE FLOOR IS 5816 03:51:50,896 --> 03:51:51,030 YOURS. 5817 03:51:51,097 --> 03:51:55,268 >> THANKS TO JIM FOR THAT 5818 03:51:55,334 --> 03:51:57,603 PERSPECTIVE, BEING THERE AND 5819 03:51:57,670 --> 03:51:58,904 BEING ON THE GROUND, TO PRESENT 5820 03:51:58,971 --> 03:52:00,606 WHAT WAS HAPPENING AT THE TIME. 5821 03:52:00,673 --> 03:52:08,981 MY JOB IS TO GIVE AN UPDATE AS 5822 03:52:09,048 --> 03:52:10,616 CURRENT DIRECTOR WHERE WE ARE 5823 03:52:10,683 --> 03:52:12,285 AND MORE DETAIL OF WHO WE ARE 5824 03:52:12,351 --> 03:52:13,886 AND WHAT WE DO. 5825 03:52:13,953 --> 03:52:15,488 I LIKE COLOR AND ANIMATION. 5826 03:52:15,554 --> 03:52:17,290 THERE ARE A LOT OF THEM. 5827 03:52:17,356 --> 03:52:20,126 CLICK THROUGH BECAUSE I DID NOT 5828 03:52:20,192 --> 03:52:23,963 REALIZE I WAS NOT DRIVING 5829 03:52:24,030 --> 03:52:24,730 SLIDES. 5830 03:52:24,797 --> 03:52:26,499 NCSDR, ONE MORE CLICK, 5831 03:52:26,565 --> 03:52:27,633 CONGRESSIONALLY MANDATED. 5832 03:52:27,700 --> 03:52:29,735 OUR MISSION IS REALLY 5833 03:52:29,802 --> 03:52:30,036 THREE-FOLD. 5834 03:52:30,102 --> 03:52:32,271 WE CAN BEND IT INTO THREE 5835 03:52:32,338 --> 03:52:32,838 CATEGORIES. 5836 03:52:32,905 --> 03:52:38,344 WE SUPPORT RESEARCH AND 5837 03:52:38,411 --> 03:52:39,178 TRAINING, COORDINATE ACTIVITIES 5838 03:52:39,245 --> 03:52:40,646 OF THE CENTER NOT ONLY ACROSS 5839 03:52:40,713 --> 03:52:43,549 NIH BUT THE FEDERAL GOVERNMENT. 5840 03:52:43,616 --> 03:52:47,386 WE ALSO HAVE AN EDUCATION OF THE 5841 03:52:47,453 --> 03:52:48,287 PUBLIC AND RESEARCH COMMUNITIES 5842 03:52:48,354 --> 03:52:50,056 COMPONENT, JIM GAVE A CLEAR 5843 03:52:50,122 --> 03:52:51,557 EXAMPLE WITH THE GARFIELD STAR 5844 03:52:51,624 --> 03:52:53,326 SLEEPER CAMPAIGN. 5845 03:52:53,392 --> 03:52:56,462 THE LAW MANDATES THAT WE DEVELOP 5846 03:52:56,529 --> 03:52:58,230 A COMPREHENSIVE RESEARCH PLAN SO 5847 03:52:58,297 --> 03:53:00,099 WE ARE THINKING THROUGH 5848 03:53:00,166 --> 03:53:02,601 PRIORITIES AND WHAT NEEDS TO BE 5849 03:53:02,668 --> 03:53:04,370 DONE AS FAR AS ACTIVITIES OF THE 5850 03:53:04,437 --> 03:53:06,572 CENTER, ONE OF THE THINGS WE DO. 5851 03:53:06,639 --> 03:53:08,874 SO TO DO THIS, TO ACCOMPLISH OUR 5852 03:53:08,941 --> 03:53:13,813 MISSION, THE CENTER HAS A FACA 5853 03:53:13,879 --> 03:53:14,613 COMMITTEE, SLEEP DISORDERS 5854 03:53:14,680 --> 03:53:16,749 RESEARCH ADVISORY BOARD WHICH 5855 03:53:16,816 --> 03:53:19,719 ADVISES AND ASSISTS AND CONSULTS 5856 03:53:19,785 --> 03:53:23,556 AND MAKES RECOMMENDATIONS ON 5857 03:53:23,622 --> 03:53:24,690 SIGN ACTIVE ACTIVITIES, RESEARCH 5858 03:53:24,757 --> 03:53:25,825 DIRECTION AND PRIORITIES TO BE 5859 03:53:25,891 --> 03:53:29,762 CARRIED OUT BY AND THROUGH THE 5860 03:53:29,829 --> 03:53:31,497 NCSDR. 5861 03:53:31,564 --> 03:53:31,897 NEXT SLIDE PLEASE. 5862 03:53:31,964 --> 03:53:35,401 AND SO YOU CAN DO ANOTHER CLICK. 5863 03:53:35,468 --> 03:53:37,002 THE SLEEP DISORDERS RESEARCH 5864 03:53:37,069 --> 03:53:39,939 ADVISORY BOARD MEETINGS ARE THE 5865 03:53:40,005 --> 03:53:43,476 PREMIER VENUE WHERE THE 5866 03:53:43,542 --> 03:53:44,510 COMMUNITY INCLUDING RESEARCHERS, 5867 03:53:44,577 --> 03:53:45,511 PROFESSIONALS, STAKEHOLDERS AND 5868 03:53:45,578 --> 03:53:47,413 GOVERNMENT AGENCIES CAN COME AND 5869 03:53:47,480 --> 03:53:48,814 EXCHANGE VIEWS ON WHAT NEEDS TO 5870 03:53:48,881 --> 03:53:50,282 BE DONE. 5871 03:53:50,349 --> 03:53:52,918 SO THE NIH UTILIZED FOUR TYPES 5872 03:53:52,985 --> 03:53:54,553 OF ADVISORY COMMITTEES. 5873 03:53:54,620 --> 03:53:57,223 SO THE SLEEP DISORDERS RESEARCH 5874 03:53:57,289 --> 03:53:59,759 ADVISORY BOARD IS THIS PROGRAM 5875 03:53:59,825 --> 03:54:02,595 ADVISORY COMMITTEE. 5876 03:54:02,661 --> 03:54:07,299 I PUT A SNIPPET OF THE CHARTER 5877 03:54:07,366 --> 03:54:09,835 ON THE SIDE, UPDATED EVERY TWO 5878 03:54:09,902 --> 03:54:13,139 YEARS TO MAKE SURE WE'RE MEETING 5879 03:54:13,205 --> 03:54:14,640 OUR MANDATE. 5880 03:54:14,707 --> 03:54:15,708 CLICK THROUGH. 5881 03:54:15,775 --> 03:54:16,142 AGAIN. 5882 03:54:16,208 --> 03:54:21,013 I LOVE COLOR AND ANIMATIONS. 5883 03:54:21,080 --> 03:54:22,782 RIGHT THERE. 5884 03:54:22,848 --> 03:54:24,049 NCSDR COORDINATES WITH NIH, 5885 03:54:24,116 --> 03:54:26,252 SOMETHING CALLED THE SLEEP 5886 03:54:26,318 --> 03:54:27,586 DISORDERS RESEARCH COORDINATING 5887 03:54:27,653 --> 03:54:29,255 COMMITTEE, IN EXISTENCE SINCE 5888 03:54:29,321 --> 03:54:33,025 THE CENTER WAS IN EXISTENCE, 5889 03:54:33,092 --> 03:54:33,392 MID-'80s. 5890 03:54:33,459 --> 03:54:36,061 AND THIS COMMITTEE IS COMPRISED 5891 03:54:36,128 --> 03:54:37,963 OF PROGRAM OFFICIALS ACROSS THE 5892 03:54:38,030 --> 03:54:40,266 NIH THAT SLEEP AND CIRCADIAN 5893 03:54:40,332 --> 03:54:41,567 BIOLOGY RESEARCH IN THEIR 5894 03:54:41,634 --> 03:54:43,202 PORTFOLIOS. 5895 03:54:43,269 --> 03:54:45,271 WE HAVE OTHER AGENCIES ACROSS 5896 03:54:45,337 --> 03:54:46,539 THE FEDERAL GOVERNMENT INCLUDING 5897 03:54:46,605 --> 03:54:49,141 DEPARTMENT OF DEFENSE, 5898 03:54:49,208 --> 03:54:50,342 DEPARTMENT OF TRANSPORTATION, 5899 03:54:50,409 --> 03:54:51,644 DEPARTMENT MUCH HOUSING AND 5900 03:54:51,710 --> 03:54:53,512 URBAN DEVELOPMENT, DEPARTMENT OF 5901 03:54:53,579 --> 03:54:57,983 ENERGY, SEVERAL OTHERS WE 5902 03:54:58,050 --> 03:54:58,350 COORDINATE WITH. 5903 03:54:58,417 --> 03:55:00,519 THIS INFORMATION AGAIN WE TALK 5904 03:55:00,586 --> 03:55:02,822 ABOUT SLEEP DISORDERS RESEARCH 5905 03:55:02,888 --> 03:55:04,256 ADVISORY BOARD, WE MEET THREE 5906 03:55:04,323 --> 03:55:05,491 TIMES A YEAR. 5907 03:55:05,558 --> 03:55:07,393 THE FIRST THURSDAY AND FRIDAY IN 5908 03:55:07,460 --> 03:55:07,626 APRIL. 5909 03:55:07,693 --> 03:55:13,966 WE JUST HAD A MEETING EARLIER 5910 03:55:14,033 --> 03:55:15,100 THIS MONTH, WE MEET FIRST 5911 03:55:15,167 --> 03:55:17,937 THURSDAY IN AUGUST AND FIRST 5912 03:55:18,003 --> 03:55:18,871 THURSDAY IN DECEMBER. 5913 03:55:18,938 --> 03:55:21,540 THIS INFORMATION FROM ALL OF 5914 03:55:21,607 --> 03:55:23,442 THESE STAKEHOLDERS AND 5915 03:55:23,509 --> 03:55:25,478 DISCUSSIONS IS RECORDED IN THIS 5916 03:55:25,544 --> 03:55:27,546 PLAN, A SIGNPOST FOR THE 5917 03:55:27,613 --> 03:55:31,951 COMMUNITY AND NIH ABOUT THE 5918 03:55:32,017 --> 03:55:32,952 DIRECTIONS TO BE CONSIDERED. 5919 03:55:33,018 --> 03:55:36,222 NEXT SLIDE PLEASE. 5920 03:55:36,288 --> 03:55:39,291 SO ALTHOUGH THE NCSDR IS A 5921 03:55:39,358 --> 03:55:41,794 COORDINATION HUB, THIS RESEARCH 5922 03:55:41,861 --> 03:55:42,595 IS SUPPORTED ACROSS NIH. 5923 03:55:42,661 --> 03:55:46,765 AND TO GIVE A PICTURE OF THE 5924 03:55:46,832 --> 03:55:49,468 LANDSCAPE, CURRENTLY THERE ARE 5925 03:55:49,535 --> 03:55:51,871 21 INSTITUTES, CENTERS AND 5926 03:55:51,937 --> 03:55:53,305 AUDIENCES FUNDING RESEARCH, 5927 03:55:53,372 --> 03:56:03,849 FUNDING IN THESE AREAS HAS 5928 03:56:04,083 --> 03:56:05,317 INCREASED OVER THE YEARS IN 5929 03:56:05,384 --> 03:56:07,286 HEALTH OF WOMEN, MA TENTER 5930 03:56:07,353 --> 03:56:09,255 HEALTH, MINORITY HEALTH AND 5931 03:56:09,321 --> 03:56:11,857 HEALTH DISPARITIES, SUBSTANCE 5932 03:56:11,924 --> 03:56:13,292 ABUSE, PAIN RESEARCH, AGING AND 5933 03:56:13,359 --> 03:56:15,494 IMMUNE RESEARCH. 5934 03:56:15,561 --> 03:56:16,428 SLEEP AND CIRCADIAN BIOLOGY ARE 5935 03:56:16,495 --> 03:56:26,972 CONNECTED TO ALL OF THESE. 5936 03:56:28,340 --> 03:56:34,680 THIS IS THE NEXUS, WE'RE LOCATED 5937 03:56:34,747 --> 03:56:37,716 IN NHLBI THERE ARE RESEARCH 5938 03:56:37,783 --> 03:56:38,651 AREAS WE SUPPORT WITHIN HEART, 5939 03:56:38,717 --> 03:56:42,521 LUNG AND BLOOD MISSION. 5940 03:56:42,588 --> 03:56:43,722 WE SUPPORT RESEARCH PROJECTS 5941 03:56:43,789 --> 03:56:45,925 RELATED TO REGULATION OF SLEEP 5942 03:56:45,991 --> 03:56:49,228 AND SLEEP DISORDERS, ETIOLOGY 5943 03:56:49,295 --> 03:56:50,863 AND TREATMENT OF HEART, LUNG AND 5944 03:56:50,930 --> 03:56:52,231 BLOOD DISEASES. 5945 03:56:52,298 --> 03:56:54,366 WE SUPPORT RESEARCH IN 5946 03:56:54,433 --> 03:56:56,335 DIAGNOSIS, TREATMENT, PREVENTION 5947 03:56:56,402 --> 03:56:57,770 OF SLEEP DISORDERED BREATHING, 5948 03:56:57,836 --> 03:57:01,574 SLEEP APNEA WAS ONE OF THE BIG 5949 03:57:01,640 --> 03:57:03,008 PULSE IN THE DEVELOPMENT OF THE 5950 03:57:03,075 --> 03:57:03,709 CENTER. 5951 03:57:03,776 --> 03:57:07,146 NHLBI IS THE LARGERS FUNDER. 5952 03:57:07,212 --> 03:57:09,949 WE HAVE A LARGE PORTFOLIO TO 5953 03:57:10,015 --> 03:57:12,217 DETERMINE HOW THE BRAIN CONTROLS 5954 03:57:12,284 --> 03:57:15,187 BREATHING DURING SLEEP. 5955 03:57:15,254 --> 03:57:18,257 NEXT SLIDE PLEASE. 5956 03:57:18,324 --> 03:57:20,759 AND SO THE NCSDR EXPERIENCED 5957 03:57:20,826 --> 03:57:25,397 GROWTH IN THE LAST SEVERAL 5958 03:57:25,464 --> 03:57:25,631 YEARS. 5959 03:57:25,698 --> 03:57:27,333 WHEN I JOINED EIGHT OR NINE 5960 03:57:27,399 --> 03:57:30,169 YEARS AGO THERE WAS ONLY FOUR 5961 03:57:30,235 --> 03:57:32,905 PEOPLE SO WHEN YOU'RE TALKING 5962 03:57:32,972 --> 03:57:34,273 ABOUT A SMALL GROUP, SMALL 5963 03:57:34,340 --> 03:57:38,143 DOESN'T MEAN YOU CAN'T BE 5964 03:57:38,210 --> 03:57:38,377 MIGHTY. 5965 03:57:38,444 --> 03:57:40,346 NCSDR IS THE ENGINE THAT COULD, 5966 03:57:40,412 --> 03:57:42,982 PULLING BIG THINGS FOR A LONG 5967 03:57:43,048 --> 03:57:43,215 TIME. 5968 03:57:43,282 --> 03:57:45,284 WE ESSENTIALLY DOUBLED STAFF 5969 03:57:45,351 --> 03:57:48,020 WHEN I BECAME DIRECTOR, MORE 5970 03:57:48,087 --> 03:57:52,157 THAN DOUBLED STAFF WHEN I BECAME 5971 03:57:52,224 --> 03:57:54,259 DIRECTOR IN 2020. 5972 03:57:54,326 --> 03:57:54,960 LATE 2020. 5973 03:57:55,027 --> 03:57:56,562 AND SO IN ADDITION TO THE GROWTH 5974 03:57:56,629 --> 03:57:59,765 THE REASON FOR GROWTH WAS 5975 03:57:59,832 --> 03:58:01,333 ESSENTIALLY BECAUSE SCIENCE WAS 5976 03:58:01,400 --> 03:58:02,267 EVOLVING. 5977 03:58:02,334 --> 03:58:04,703 WE HAVE DIFFERENT PROGRAMS, TWO 5978 03:58:04,770 --> 03:58:08,407 PROGRAMS ADDED SPECIFICALLY, ONE 5979 03:58:08,474 --> 03:58:12,945 IN PREVENTION AND SLEEP HEALTH 5980 03:58:13,012 --> 03:58:17,549 AND ONE IN CHRONOBIOLOGY. 5981 03:58:17,616 --> 03:58:18,717 WHEN TALKING ABOUT THE PLAN 5982 03:58:18,784 --> 03:58:21,687 THERE HAVE BEEN FOUR PLANS, MOST 5983 03:58:21,754 --> 03:58:23,956 RECENT PUBLISHED IN DISEASE 5984 03:58:24,023 --> 03:58:24,156 2021. 5985 03:58:24,223 --> 03:58:25,591 THESE COVERED SCIENCE OF THE 5986 03:58:25,658 --> 03:58:28,460 TIMES, THE PLANS ARE NOT MEANT 5987 03:58:28,527 --> 03:58:30,996 TO BE BLUEPRINTS BUT DYNAMIC 5988 03:58:31,063 --> 03:58:34,166 SPRINGBOARDS FOR EXCITING 5989 03:58:34,233 --> 03:58:35,868 SCIENCE TO COME. 5990 03:58:35,934 --> 03:58:37,336 ALL THE RECOMMENDATIONS, A LOT 5991 03:58:37,403 --> 03:58:40,372 FOCUSED ON TOOLS AND TECHNIQUES, 5992 03:58:40,439 --> 03:58:42,508 TO UNDERSTAND DAY TIME 5993 03:58:42,574 --> 03:58:44,109 SLEEPINESS, NEGATIVE IMPACT ON 5994 03:58:44,176 --> 03:58:46,712 SOCIETY, AND AS RESEARCH 5995 03:58:46,779 --> 03:58:49,581 PROGRESSED EXCITING AND 5996 03:58:49,648 --> 03:58:50,382 SCIENTIFIC FINDINGS 5997 03:58:50,449 --> 03:58:53,085 MATERIALIZED, PSOAS THE SCIENCE 5998 03:58:53,152 --> 03:58:55,320 EVOLVED THESE PLANS NEED TO BE 5999 03:58:55,387 --> 03:59:05,030 CRITICAL ASSESSMENT SSESSMENT 6000 03:59:05,097 --> 03:59:07,132 NEEDS TO BE MADE SO THE PLAN IS 6001 03:59:07,199 --> 03:59:09,902 NOT MEANT TO SIT ON THE SHELF 6002 03:59:09,968 --> 03:59:12,938 AND COLLECT DUST, VIRTUAL SHELF, 6003 03:59:13,005 --> 03:59:20,646 IT IS A IT IS A LIVING ALMOST 6004 03:59:20,713 --> 03:59:21,714 BREATHING THING. 6005 03:59:21,780 --> 03:59:29,188 I WANT TO HIGHLIGHT A A FEW, 6006 03:59:29,254 --> 03:59:31,824 COORDINATING WITH THE "HEAL" 6007 03:59:31,890 --> 03:59:33,492 PROGRAM, HELPING END ADDICTION 6008 03:59:33,559 --> 03:59:36,395 LONG TERM, OPIOID USE DISORDER. 6009 03:59:36,462 --> 03:59:38,530 STAFF HAVE LED SEVERAL 6010 03:59:38,597 --> 03:59:40,032 INITIATIVES TO INTEGRATE SLEEP 6011 03:59:40,099 --> 03:59:41,133 INTO THE PREVENTION AND 6012 03:59:41,200 --> 03:59:43,969 TREATMENT OF OPIOID USE 6013 03:59:44,036 --> 03:59:49,975 DISORDERS THAT APPLY TO NHLBI TO 6014 03:59:50,042 --> 03:59:53,946 DEVELOP NOVEL THERAPEUTICS FOR 6015 03:59:54,012 --> 03:59:55,247 OPIOID INDUCED RESPIRATORY 6016 03:59:55,314 --> 03:59:55,781 DEPRESSION. 6017 03:59:55,848 --> 03:59:59,718 WE TALK ABOUT COORDINATION. 6018 03:59:59,785 --> 04:00:02,121 AGAIN, NCSDR OR NHLBI DOESN'T 6019 04:00:02,187 --> 04:00:03,155 FUND ALL SLEEP AND CIRCADIAN 6020 04:00:03,222 --> 04:00:05,124 RESEARCH, THAT WAS THE POINT OF 6021 04:00:05,190 --> 04:00:06,992 THE SLIDE SHOWING ACROSS NIH BUT 6022 04:00:07,059 --> 04:00:09,194 WE HAVE HOW WE'RE ABLE TO 6023 04:00:09,261 --> 04:00:11,363 SUPPORT THE GROWTH LOOKING FOR 6024 04:00:11,430 --> 04:00:12,331 UNIQUE OPPORTUNITIES. 6025 04:00:12,397 --> 04:00:13,732 SO FOR THE "HEAL" PROGRAM WE 6026 04:00:13,799 --> 04:00:16,368 WERE ABLE TO TAKE OUR PORTFOLIO 6027 04:00:16,435 --> 04:00:20,305 AND THIS WAS WHERE WE CONTROL 6028 04:00:20,372 --> 04:00:22,708 AND SLEEP AND CORRECT TO OPIOID 6029 04:00:22,775 --> 04:00:24,777 USE DISORDER AND RESPIRATORY 6030 04:00:24,843 --> 04:00:25,077 DEPRESSION. 6031 04:00:25,144 --> 04:00:26,111 NEXT SLIDE PLEASE. 6032 04:00:26,178 --> 04:00:30,149 SO ANOTHER PROGRAM THAT WE'RE 6033 04:00:30,215 --> 04:00:32,117 WORKING WITH INCLUDE PROGRAM, 6034 04:00:32,184 --> 04:00:33,018 INVESTIGATION OF CO-OCCURRING 6035 04:00:33,085 --> 04:00:34,319 CONDITIONS ACROSS THE LIFESPAN 6036 04:00:34,386 --> 04:00:37,122 TO UNDERSTAND DOWN SYNDROME. 6037 04:00:37,189 --> 04:00:39,491 THIS PROGRAM IS RELATIVELY NEW, 6038 04:00:39,558 --> 04:00:41,193 DOWN SYNDROME -- PERSON LIVING 6039 04:00:41,260 --> 04:00:43,629 WITH DOWN SYNDROME, THAT 6040 04:00:43,695 --> 04:00:45,731 COMMUNITY ADVOCATED, LOBBIED 6041 04:00:45,798 --> 04:00:45,998 CONGRESS. 6042 04:00:46,064 --> 04:00:48,867 IN 2018 CONGRESS GAVE THEM A 6043 04:00:48,934 --> 04:00:52,037 SAID-ASIDE FOR FUNDING FOR 6044 04:00:52,104 --> 04:00:53,539 "INCLUDE," THAT HAS GROWN OVER 6045 04:00:53,605 --> 04:00:55,407 SEVERAL YEARS AND THE REASON 6046 04:00:55,474 --> 04:00:58,243 WE'RE INTERESTED IS BECAUSE THE 6047 04:00:58,310 --> 04:00:59,845 PREVALENCE OF SLEEP DISORDER 6048 04:00:59,912 --> 04:01:02,648 BREATHING OR APNEA AND PERSONS 6049 04:01:02,714 --> 04:01:05,284 LIVING WITH DOWN SYNDROME 6050 04:01:05,350 --> 04:01:09,321 ESTIMATED BETWEEN 54 TO 90%. 6051 04:01:09,388 --> 04:01:12,524 RIGHT NOW WE'RE SUPPORTING SIX 6052 04:01:12,591 --> 04:01:17,429 CLINICAL TRIALS THAT INCLUDE 6053 04:01:17,496 --> 04:01:21,700 PHARMACOTHERAPY, SOME 6054 04:01:21,767 --> 04:01:23,435 INTENTIONAL INTENSIVE BEHAVIORAL 6055 04:01:23,502 --> 04:01:25,304 INTERVENTIONS, GLOSS AL NERVE 6056 04:01:25,370 --> 04:01:26,738 STIMULATION AND DEVICES TO KEEP 6057 04:01:26,805 --> 04:01:31,844 THE AIRWAY OPEN. 6058 04:01:31,910 --> 04:01:42,254 NEXT SLIDE PLEASE. 6059 04:01:45,724 --> 04:01:48,393 ANOTHER PROGRAM STARTED 6060 04:01:48,460 --> 04:01:58,971 RECENTLY, IS SLEEP AND TYPE 1 6061 04:02:01,340 --> 04:02:02,040 DIABETES, THEY WERE REVIEWED 6062 04:02:02,107 --> 04:02:03,375 LAST MONTH. 6063 04:02:03,442 --> 04:02:04,509 WE HOPE TO GET THE PROGRAM 6064 04:02:04,576 --> 04:02:05,410 STARTED SOON. 6065 04:02:05,477 --> 04:02:07,646 THESE ARE EXAMPLES OF HOW YOU 6066 04:02:07,713 --> 04:02:10,182 CAN COORDINATE AND WORK ACROSS 6067 04:02:10,249 --> 04:02:12,618 DIFFERENT ENTITIES TO SUPPORT 6068 04:02:12,684 --> 04:02:20,492 YOUR SCIENTIFIC AREA. 6069 04:02:20,559 --> 04:02:21,660 NEXT SLIDE PLEASE. 6070 04:02:21,727 --> 04:02:23,228 PRIORITIES, ALL THESE ALIGN. 6071 04:02:23,295 --> 04:02:24,897 I TALKED ABOUT NIH-WIDE SLEEP 6072 04:02:24,963 --> 04:02:27,199 RESEARCH PLAN BUT THIS PLAN 6073 04:02:27,266 --> 04:02:28,734 ALIGNS WITH THE NHLBI STRATEGIC 6074 04:02:28,800 --> 04:02:31,503 VISION AS WELL AS NIH-WIDE 6075 04:02:31,570 --> 04:02:33,672 STRATEGIC PLAN AND WE'VE BEEN 6076 04:02:33,739 --> 04:02:35,107 WORKING AGAIN ACROSS NIH AS 6077 04:02:35,173 --> 04:02:38,110 WE'RE CURRENTLY IN THE MIDST OF 6078 04:02:38,176 --> 04:02:39,878 NHLBI STRATEGIC VISIONING 6079 04:02:39,945 --> 04:02:41,179 REFRESH TO ENSURE THAT THE 6080 04:02:41,246 --> 04:02:43,382 ACTIVITIES THAT THE CENTER ARE 6081 04:02:43,448 --> 04:02:44,449 DOING ARE ALIGNING AND GROWING 6082 04:02:44,516 --> 04:02:51,490 WITH THE SCIENCE NHLBI WILL 6083 04:02:51,556 --> 04:02:53,225 SUPPORT IN THE FUTURE. 6084 04:02:53,292 --> 04:02:55,527 WITH THAT I WILL END, AND I'M 6085 04:02:55,594 --> 04:02:57,462 HAPPY TO TAKE QUESTIONS. 6086 04:02:57,529 --> 04:02:59,264 WE HAVE A SESSION RIGHT AFTER 6087 04:02:59,331 --> 04:03:01,233 THIS BUT I WILL END. 6088 04:03:01,300 --> 04:03:05,404 THANK YOU VERY MUCH. 6089 04:03:05,470 --> 04:03:07,572 >> THANK YOU, DR. KILEY AND 6090 04:03:07,639 --> 04:03:08,307 BROWN. 6091 04:03:08,373 --> 04:03:10,943 LOTS OF GREAT INSIGHTS, FOR ME 6092 04:03:11,009 --> 04:03:12,945 PAGES OF NOTES BUT I COULD SEE 6093 04:03:13,011 --> 04:03:17,950 AROUND THE ROOM A LOT OF 6094 04:03:18,016 --> 04:03:18,750 QUESTIONS SPARKING. 6095 04:03:18,817 --> 04:03:23,121 I THINKS -- THINK WE'VE COME TO 6096 04:03:23,188 --> 04:03:24,990 THE END OF THE OPEN SESSION. 6097 04:03:25,057 --> 04:03:27,626 WE'RE GOING TO BREAK FOR LUNCH 6098 04:03:27,693 --> 04:03:30,128 AND RESUME AS QUICKLY AS 6099 04:03:30,195 --> 04:03:30,429 POSSIBLE. 6100 04:03:30,495 --> 04:03:31,196 ANYTHING TO ADD? 6101 04:03:31,263 --> 04:03:33,165 >> YES. 6102 04:03:33,231 --> 04:03:35,901 I WOULD LIKE TO THANK EVERYONE, 6103 04:03:35,968 --> 04:03:37,569 AND I WOULD LIKE TO CLOSE THE 6104 04:03:37,636 --> 04:03:39,738 OPEN SESSION WITH OUR GRATITUDE 6105 04:03:39,805 --> 04:03:42,174 TO EVERYONE WHO JOINED US TODAY 6106 04:03:42,240 --> 04:03:43,575 ON NIH VIDEOCAST. 6107 04:03:43,642 --> 04:03:45,544 THANK YOU FOR SENDING YOUR 6108 04:03:45,610 --> 04:03:46,979 FEEDBACK AND YOUR QUESTIONS. 6109 04:03:47,045 --> 04:03:48,313 THEY ARE ALL RECORDED. 6110 04:03:48,380 --> 04:03:51,183 AND WE WILL BE USING THEM AS A 6111 04:03:51,249 --> 04:03:53,352 PART OF THE DELIBERATIONS OF 6112 04:03:53,418 --> 04:03:54,086 THIS COMMISSION. 6113 04:03:54,152 --> 04:03:58,357 HUGE THANK YOU GOES TO ALL OF 6114 04:03:58,423 --> 04:04:03,895 YOU WHO PREPARED TODAY'S SLIDES, 6115 04:04:03,962 --> 04:04:05,597 AND MEETING CONTINUOUSLY. 6116 04:04:05,664 --> 04:04:07,866 THANK YOU FOR THAT. 6117 04:04:07,933 --> 04:04:10,869 IF YOU REALLY REACHED TO A NICE 6118 04:04:10,936 --> 04:04:13,271 POINT, WHERE YOU PAVED THE ROAD 6119 04:04:13,338 --> 04:04:16,241 FOR THE NEXT MEETINGS AND THE 6120 04:04:16,308 --> 04:04:16,775 COMMISSION. 6121 04:04:16,842 --> 04:04:20,412 THANK YOU TO OUR CO-CHAIRS. 6122 04:04:20,479 --> 04:04:22,714 THIS WAS WITH YOUR LEADERSHIP 6123 04:04:22,781 --> 04:04:25,650 WORKING OUT SO FAR, SO GREAT. 6124 04:04:25,717 --> 04:04:30,889 AND I ALSO WANT TO THANK THE 6125 04:04:30,956 --> 04:04:32,791 EXCELLENT SUPPORT PROVIDED BY 6126 04:04:32,858 --> 04:04:34,059 THE SUPPORT TEAM. 6127 04:04:34,126 --> 04:04:35,694 YOU'RE NOT SEEING THEM. 6128 04:04:35,761 --> 04:04:39,031 NUMEROUS PEOPLE WORKING TO 6129 04:04:39,097 --> 04:04:43,368 SUPPORT THIS COMMISSION 6130 04:04:43,435 --> 04:04:49,841 INCLUDING NHLBI LEADERSHIP, DR. 6131 04:04:49,908 --> 04:04:51,276 LENOREA JOHNSON IS SUPPORTING 6132 04:04:51,343 --> 04:04:52,177 US. 6133 04:04:52,244 --> 04:04:53,612 THANK YOU. 6134 04:04:53,678 --> 04:04:57,382 AND THE EXTRAMURAL PROGRAM AND 6135 04:04:57,449 --> 04:04:58,383 MY TRUSTED COLLEAGUE HERE, YOU 6136 04:04:58,450 --> 04:05:06,691 KNOW HOW MUCH SHE WORKS TO MAKE 6137 04:05:06,758 --> 04:05:08,026 US GO. 6138 04:05:08,093 --> 04:05:11,730 AND DR. GALLIN FOR HER 6139 04:05:11,797 --> 04:05:12,497 LEADERSHIP. 6140 04:05:12,564 --> 04:05:16,301 BEHIND THE SCENES NIH-WIDE 6141 04:05:16,368 --> 04:05:16,835 WORKING GROUPS, LYMPHATIC 6142 04:05:16,902 --> 04:05:18,637 COORDINATION COMMITTEE. 6143 04:05:18,703 --> 04:05:20,272 THEY HAVE BEEN INSTRUMENTAL. 6144 04:05:20,338 --> 04:05:21,706 WE'VE BEEN COMMUNICATING WITH 6145 04:05:21,773 --> 04:05:23,975 THEM GETTING THEIR FEEDBACK AND 6146 04:05:24,042 --> 04:05:25,177 INTEGRATING FEEDBACK INTO THE 6147 04:05:25,243 --> 04:05:29,114 COMMISSION'S WORK AND LAST BUT 6148 04:05:29,181 --> 04:05:31,750 NOT LEAST NHLBI SUPPORTS 6149 04:05:31,817 --> 04:05:34,152 WORKSHOPS, THANK YOU, ALL THE 6150 04:05:34,219 --> 04:05:35,720 MEETINGS ARE ACCESSIBLE BECAUSE 6151 04:05:35,787 --> 04:05:38,924 OF YOU GUYS. 6152 04:05:38,990 --> 04:05:41,226 THANK YOU FOR ALL THE QUESTIONS 6153 04:05:41,293 --> 04:05:42,561 WE ASK IS YES. 6154 04:05:42,627 --> 04:05:43,261 THANK YOU. 6155 04:05:43,328 --> 04:05:47,232 THIS IS THE END OF THE OPEN 6156 04:05:47,299 --> 04:05:47,666 SESSION. 6157 04:05:47,732 --> 04:05:51,837 WITH THAT, YOU GUYS WILL NOT SEE 6158 04:05:51,903 --> 04:05:53,638 THE REST OF IT. 6159 04:05:53,705 --> 04:05:54,439 WE'RE SAYING SAFE TRAVELS. 6160 04:05:54,506 --> 04:05:56,908 THIS IS THE END OF THE OPEN 6161 04:05:56,975 SESSION.