1 00:00:05,972 --> 00:00:10,009 WELCOME EVERYONE. INCLUDING ATTENDEES FROM LATIN AMERICA, 2 00:00:10,076 --> 00:00:15,849 CENTRAL AMERICA, AS WELL AS KENYA TO OUR INAUGURAL INCLUDE 3 00:00:15,915 --> 00:00:19,919 DIVERSITY, EQUITY, INCLUSION AND ACCESSIBILITY SEMINAR SERIES. 4 00:00:19,986 --> 00:00:25,759 OUR FIRST WEBINAR TOPIC IS THE VALUE OF DIVERSE PERSPECTIVES IN 5 00:00:25,825 --> 00:00:28,928 DOWN SYNDROME RESEARCH. I AM DR. 6 00:00:28,995 --> 00:00:32,632 SEJATHA BOLTON, A PROGRAM DIRECTOR AT THE UNICE KENNEDY 7 00:00:32,699 --> 00:00:35,902 SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN 8 00:00:35,969 --> 00:00:36,903 DEVELOPMENT. 9 00:00:36,970 --> 00:00:41,408 AND LEADING TODAY'S SEMINAR SERIES ALONG WITH MISS LINDA 10 00:00:41,474 --> 00:00:43,510 GARCIA AND MISS MARJORIE VANDY. 11 00:00:43,576 --> 00:00:48,448 SO WE HAVE, 4 GREAT 12 00:00:48,515 --> 00:00:52,919 SPEAKERS LINED UP FOR TODAY'S WEBINAR AND THE DETAILED BIOS, 13 00:00:52,986 --> 00:00:53,486 FOR THE SPEAKERS ARE ON THE REGISTRATION PAGE. 14 00:00:53,553 --> 00:00:58,291 SO OUR FIRST SPEAKER IS DR. KAREEM, WATSON, WHO IS THE CHIEF 15 00:00:58,358 --> 00:01:01,494 ENGAGEMENT OFFICER OF THE NATIONAL INSTITUTES OF HEALTH, 16 00:01:01,561 --> 00:01:03,496 ALL OF US RESEARCH PROGRAM. 17 00:01:03,563 --> 00:01:08,401 DR. WATSON LEADS THE ALL OF US RESEARCH PROGRAMS EFFORTS TO 18 00:01:08,468 --> 00:01:10,603 FOSTER RELATIONSHIPS WITH PARTICIPANTS, COMMUNITIES, 19 00:01:10,670 --> 00:01:15,942 RESEARCHERS AND PROVIDERS ACROSS THE US TO HELP BUILD ONE OF THE 20 00:01:16,009 --> 00:01:19,512 LARGEST, MOST DIVERSE HEALTH DATABASE OF ITS KIND. 21 00:01:19,579 --> 00:01:24,384 TO STUDY HEALTH AND INNESS. OUR SECOND SPEAKER, WE WILL HEAR 22 00:01:24,451 --> 00:01:29,289 FROM DR. AMELIE RAMIREZ WHO IS PROFESSOR AND CHAIR OF THE 23 00:01:29,355 --> 00:01:31,491 DEPARTMENT OF POPULATION HEALTH SCIENCES. 24 00:01:31,558 --> 00:01:35,462 AT UT HEALTH SAN ANTONIO 25 00:01:35,528 --> 00:01:38,631 THANK YOU ALL SO MUCH. IT'S A GREAT OPPORTUNITY TO BE HERE 26 00:01:38,698 --> 00:01:40,467 TODAY. AS NOTED, MY NAME IS DR. 27 00:01:40,533 --> 00:01:43,937 KAREEM WATSON. I AM THE CHIEF ENGAGEMENT OFFICER FOR THE 28 00:01:44,003 --> 00:01:47,407 NATIONAL INSTITUTES OF HEALTH. ALL OF US RESEARCH PROGRAM AND 29 00:01:47,474 --> 00:01:51,945 I'M HERE TODAY TO TALK TO YOU A LITTLE BIT ABOUT OUR RESEARCH 30 00:01:52,011 --> 00:01:55,081 PROGRAM, THE ALL OF US RESEARCH PROGRAM, AND ENGAGING 31 00:01:55,148 --> 00:01:57,484 UNDERREPRESENTED COMMUNITIES IN BIOMEDICAL RESEARCH THROUGH OUR 32 00:01:57,550 --> 00:01:58,485 PROGRAM. 33 00:01:58,551 --> 00:02:02,789 NEXT SLIDE. WHAT I HOPE TO ACCOMPLISH TODAY IS TO DESCRIBE, 34 00:02:02,856 --> 00:02:07,126 TO BRIEFLY DESCRIBE THE OLIVER'S RESEARCH PROGRAM TO YOU AND ITS 35 00:02:07,193 --> 00:02:10,263 RESOURCES TO ENGAGE POPULATIONS WHO HAVE BEEN HISTORICALLY 36 00:02:10,330 --> 00:02:13,800 UNDERREPRESENTED IN BIOMEDICAL RESEARCH AND ALSO TO DISCUSS HOW 37 00:02:13,867 --> 00:02:17,337 ALL OF US HAS BEEN VERY INTENTIONAL IN ADDRESSING 38 00:02:17,403 --> 00:02:20,473 DIVERSITY, EQUITY AND INCLUSION IN OUR IN OUR 39 00:02:20,540 --> 00:02:23,877 TRIAL IN OUR PROGRAM AND ALSO THE IMPORTANCE OF 40 00:02:23,943 --> 00:02:27,680 INTERSECTIONALITY. AND LASTLY, WANT TO HIGHLIGHT HOW ALL OF US 41 00:02:27,747 --> 00:02:31,851 HAS BEEN ABLE TO ACHIEVE THE RESEARCHER WORK THAT WE'RE DOING 42 00:02:31,918 --> 00:02:34,487 TO INCLUDE MORE DATA FROM DIVERSE COMMUNITIES. 43 00:02:34,554 --> 00:02:39,192 NEXT SLIDE. SO I WANT TO BRIEFLY START BY TELLING YOU WHAT IS THE 44 00:02:39,259 --> 00:02:42,862 ALL OF US RESEARCH PROGRAM. SO IN 2015 THE NATIONAL INSTITUTE 45 00:02:42,929 --> 00:02:45,465 OF HEALTH FORMED THE PRECISION MEDICINE INITIATIVE WORKING 46 00:02:45,532 --> 00:02:46,466 GROUP. 47 00:02:46,533 --> 00:02:51,037 OF THE ADVISORY COMMITTEE TO THE DIRECTOR IN MARCH OF 2015. THE 48 00:02:51,104 --> 00:02:54,474 GROUP CONCLUDED THAT IT'S WORKING SEPTEMBER 2015 WITH A 49 00:02:54,541 --> 00:02:55,475 DETAILED REPORT. 50 00:02:55,542 --> 00:02:59,779 THE REPORT PROVIDED A FRAMEWORK FOR SETTING UP THE ALL OF US 51 00:02:59,846 --> 00:03:03,016 RESEARCH PROGRAM. THE OFFICE RESEARCH PROGRAM IS INVITING 1 52 00:03:03,082 --> 00:03:07,687 MILLION MORE PEOPLE ACROSS THE US TO HELP BUILD ONE OF THE MOST 53 00:03:07,754 --> 00:03:09,489 DIVERSE HEALTH DATABASES IN HISTORY. 54 00:03:09,556 --> 00:03:12,892 WE WELCOME PARTICIPANTS FROM ALL BACKGROUNDS. RESEARCHERS WILL 55 00:03:12,959 --> 00:03:17,196 USE THE DATA TO LEARN HOW OUR BIOLOGY, LIFESTYLE, AND 56 00:03:17,263 --> 00:03:18,464 ENVIRONMENT AFFECT HEALTH. 57 00:03:18,531 --> 00:03:21,701 THIS MAY ONE DAY HELP THEM FIND WAYS TO TREAT AND PREVENT 58 00:03:21,768 --> 00:03:25,238 DISEASE. ONE OF THE THINGS THAT WE LIKE TO SAY IN THE OLIVEREST 59 00:03:25,305 --> 00:03:28,474 RESEARCH PROGRAM IS THAT WHAT WE WANT TO DO IS ACCELERATE HEALTH. 60 00:03:28,541 --> 00:03:28,808 RESEARCH AND MEDICAL BREAKTHROUGHS ENABLING 61 00:03:28,875 --> 00:03:29,142 INDIVIDUALIZED PREVENTION, TREATMENT, AND CARE FOR ALL OF 62 00:03:29,208 --> 00:03:29,475 US. 63 00:03:29,542 --> 00:03:36,149 REALLY MOVING AWAY FROM THIS CONCEPT THAT A ONE SIZE FITS ALL 64 00:03:36,215 --> 00:03:40,587 APPROACH WORKS IN HEALTH DISPARITIES RESEARCH. AND WE 65 00:03:40,653 --> 00:03:44,490 WANT TO DO THIS BY NURTURING PARTNERSHIPS. 66 00:03:44,557 --> 00:03:49,128 WE ALSO WANT TO MAKE SURE WE DELIVER ONE OF THE LARGEST AND 67 00:03:49,195 --> 00:03:53,399 RICHEST AND DIVERSE DATA SETS AND THEN WE WANT TO CATALYZE AN 68 00:03:53,466 --> 00:03:56,269 ECOSYSTEM OF COMMUNITY RESEARCHERS AND FUNDERS WHO MAKE 69 00:03:56,336 --> 00:03:59,472 ALL OF US AN INDISPENSABLE PART OF HEALTH RESEARCH. 70 00:03:59,539 --> 00:04:01,474 NEXT SLIDE. 71 00:04:01,541 --> 00:04:04,811 IN ADDITION TO ALL OF US HAVING INTENTIONALITY AROUND THE 72 00:04:04,877 --> 00:04:08,147 DIVERSITY OF OUR PARTICIPANTS AND HOW WE ENGAGE OUR PARTNERS, 73 00:04:08,214 --> 00:04:12,485 WE ALSO UNDERSTAND THAT IN ORDER TO REALLY TO BE ABLE TO ASK 74 00:04:12,552 --> 00:04:14,153 QUESTIONS ABOUT INTERSECTIONALITY OF RESEARCH 75 00:04:14,220 --> 00:04:17,490 ACROSS THE LIFE COURSE THAT WE MUST HAVE INTENTIONALLY ON 76 00:04:17,557 --> 00:04:20,493 THINKING ABOUT WHAT TYPE OF INFORMATION WILL WE COLLECT. 77 00:04:20,560 --> 00:04:24,230 SO TODAY WE ARE PRIORITIZING SURVEY RESPONSES. ALSO ENGAGING 78 00:04:24,297 --> 00:04:27,567 ELECTRONIC HEALTH RECORDS, WHOLE GENOME SEQUENCES AND STRUCTURAL 79 00:04:27,634 --> 00:04:30,470 VARIANTS, BUT ALSO LOOKING AT PHYSICAL MEASUREMENTS. 80 00:04:30,536 --> 00:04:35,742 AND WHAT THIS WILL ALLOW US TO DO IS BEING ABLE TO HAVE A 81 00:04:35,808 --> 00:04:39,479 ONE-STOP SHOP, ONE PLACE WHERE YOU HAVE INFORMATION ON SURVEYS. 82 00:04:39,545 --> 00:04:42,315 THESE SURVEYS CAN INCLUDE DATA ON SOCIAL DETERMINANTS OF 83 00:04:42,382 --> 00:04:44,484 HEALTH. WE'LL ALSO HAVE INFORMATION ABOUT ELECTRONIC 84 00:04:44,550 --> 00:04:45,485 HEALTH RECORDS. 85 00:04:45,551 --> 00:04:48,254 THIS ELECTRONIC HEALTH RECORD DATA WILL BE VERY IMPORTANT 86 00:04:48,321 --> 00:04:52,258 BECAUSE IT WOULD ALLOW US TO SEE HOW PEOPLE MAY GROW AND CHANGE 87 00:04:52,325 --> 00:04:53,493 OVER THE LIFE COURSE. 88 00:04:53,559 --> 00:04:55,361 BUT THEN ALSO COLLECTING BIOLOGICAL INFORMATION FOR 89 00:04:55,428 --> 00:04:58,064 PHYSICAL MEASUREMENTS WHICH WILL ALLOW US TO REALLY THINK ABOUT 90 00:04:58,131 --> 00:05:00,466 HOW CAN WE LOOK AT THIS INTERSECTIONALITY ABOUT BIOLOGY. 91 00:05:00,533 --> 00:05:05,972 LIFESTYLE AND ENVIRONMENT. AND AS OF APRIL, 2,023, THE ALL OF 92 00:05:06,039 --> 00:05:10,977 US RESEARCHER WORKBENCH CONTAINS THE LARGEST SET OF WHOLE GENOME 93 00:05:11,044 --> 00:05:13,479 SEQUENCES WIDELY AVAILABLE FOR RESEARCH. 94 00:05:13,546 --> 00:05:16,482 NEXT SLIDE. 95 00:05:16,549 --> 00:05:19,886 AND ANOTHER THING THAT WE'RE COMMITTED TO IN OUR PROGRAM IS 96 00:05:19,952 --> 00:05:22,655 ADDRESSING THE FACT THAT HISTORICALLY WHEN YOU LOOK AT 97 00:05:22,722 --> 00:05:26,693 THE SLIDE, THE PIE GRAPH ON THE RIGHT, YOU LOOK AT OTHER GENOMIC 98 00:05:26,759 --> 00:05:30,096 STUDIES, THEY HAVE BEEN OVER 78% REPRESENTED BY EUROPEAN OR WHITE 99 00:05:30,163 --> 00:05:33,466 POPULATIONS AND ONLY ABOUT 2% OF THOSE POPULATIONS HAVE BEEN OF 100 00:05:33,533 --> 00:05:34,467 AFRICAN 101 00:05:34,534 --> 00:05:38,771 DESCENT, LESS THAN 1% OF THOSE POPULATION HAVE BEEN OF HISPANIC 102 00:05:38,838 --> 00:05:42,308 OR LATINO DESCENT AND OTHER MINORITIES HAVE REPRESENTED LESS 103 00:05:42,375 --> 00:05:43,476 THAN POINT 5%. 104 00:05:43,543 --> 00:05:47,246 AND WHAT WE KNOW THAT THIS DOES IN GENOMIC RESEARCH AND GENETIC 105 00:05:47,313 --> 00:05:51,284 RESEARCH AND RESEARCH IN GENERAL IS THAT IT LEADS TO A LACK OF 106 00:05:51,350 --> 00:05:53,486 GENERALIZABILITY FOR THE FINDINGS THAT WE HAVE. 107 00:05:53,553 --> 00:05:56,155 AND IT DOES NOT TAKE INTO ACCOUNT THE RICH DIVERSITY THAT 108 00:05:56,222 --> 00:05:59,058 WE SEE IN THE US AND EVEN MORE IMPORTANTLY THE RICH DIVERSITY 109 00:05:59,125 --> 00:06:00,493 THAT WE HAVE ACROSS THE WORLD. 110 00:06:00,560 --> 00:06:04,263 BUT IN THE ALL OF US RESEARCH PROGRAM, WE'VE BEEN ABLE TO 111 00:06:04,330 --> 00:06:07,333 ADVANCE THIS WORK AND INCLUSIVE DIVERSITY IN OUR PROGRAM THROUGH 112 00:06:07,400 --> 00:06:10,470 A LARGE EFFORTS OF COMMUNITY ENGAGEMENT THAT I'LL TALK ABOUT 113 00:06:10,536 --> 00:06:11,471 LATER. 114 00:06:11,537 --> 00:06:14,707 OUR PROGRAM TRULY REFLECTS WHAT YOU'LL SEE AS A DIVERSE MAKEUP 115 00:06:14,774 --> 00:06:16,476 OF THE UNITED STATES, FOR EXAMPLE. 116 00:06:16,542 --> 00:06:20,012 WE HAVE ABOUT 51% OF OUR PARTICIPANTS AT SELF-IDENTIFIED 117 00:06:20,079 --> 00:06:23,950 AS WHITE OR EUROPEAN ANCESTRY, BUT 17.9% OF OUR PARTICIPANTS 118 00:06:24,016 --> 00:06:27,487 SELF IDENTIFY AS BLACK, AFRICAN AMERICAN OF AFRICAN DESCENT. 119 00:06:27,553 --> 00:06:31,657 SO 16% OF OUR PARTICIPANTS SELF IDENTIFY AS BEING HISPANIC, 120 00:06:31,724 --> 00:06:35,394 LATINO OR OR SPANISH, AND 3.1% OF OUR PARTICIPANTS 121 00:06:35,461 --> 00:06:37,463 SELF-IDENTIFY AS BEING ASIAN AMERICAN. 122 00:06:37,530 --> 00:06:40,466 AND ABOUT 6.8% OF OUR PARTICIPANTS SELF IDENTIFY AS 123 00:06:40,533 --> 00:06:43,803 HAVING MORE THAN ONE RACE. WE EVEN COLLECT INFORMATION ON 124 00:06:43,870 --> 00:06:45,471 MIDDLE EASTERN AND NORTHERN AFRICA. 125 00:06:45,538 --> 00:06:49,909 NATIVE HAWAIIAN PACIFIC ISLANDER ABOUT 2.8%. AND TO DATE, WE HAVE 126 00:06:49,976 --> 00:06:54,781 BEEN ABLE TO ENGAGE OVER 651,000 ALL OF US PARTICIPANTS AND OVER 127 00:06:54,847 --> 00:06:58,818 453,000 OF OUR PARTICIPANTS HAVE COMPLETED ALL INITIAL STEPS WITH 128 00:06:58,885 --> 00:07:03,289 OUR COMMITMENT TO HAVING OVER 75% OF OUR PARTICIPANTS BE WHAT 129 00:07:03,356 --> 00:07:04,490 WE CALL UNDERREPRESENTED 130 00:07:04,557 --> 00:07:05,491 IN BIOMEDICAL RESEARCH. YOU HEAR ME USE THAT TERM A LOT TODAY. 131 00:07:05,558 --> 00:07:06,492 AND SOMETIMES WE CALL THAT UVR. 132 00:07:06,559 --> 00:07:15,501 BUT THOSE EFFORTS FOR OUR INTENTIONAL INCLUSION OF DIVERSE 133 00:07:15,568 --> 00:07:21,474 POPULATIONS HAS COME THROUGH INTENTIONAL COMMUNITY 134 00:07:21,541 --> 00:07:24,477 ENGAGEMENT. NEXT SLIDE. 135 00:07:24,544 --> 00:07:29,048 SO THIS IS AN EXAMPLE OF WHAT WE DO AND HOPEFULLY PART OF THE 136 00:07:29,115 --> 00:07:32,952 DISCUSSION WE CAN HAVE IS HOW WE CAN PARTNER WITH PROGRAMS LIKE 137 00:07:33,019 --> 00:07:36,189 INCLUDE AND OTHERS TO REALLY EXPAND AND GROW THE ENGAGEMENT 138 00:07:36,255 --> 00:07:37,490 ECOSYSTEM THAT WE UTILIZE. 139 00:07:37,557 --> 00:07:38,491 SO WITHIN THE ALL OF US RESEARCH PROGRAM WE'VE ADOPTED WHAT WE 140 00:07:38,558 --> 00:07:39,492 CALL AN ENGAGEMENT ECOSYSTEM. 141 00:07:39,559 --> 00:07:41,994 THIS ENGAGEMENT ECOSYSTEM PRIORITIZES BUILDING 142 00:07:42,061 --> 00:07:45,064 RELATIONSHIPS. IT ALSO PRIORITIZES ADVANCING THE 143 00:07:45,131 --> 00:07:49,669 SCIENCE OF ENGAGEMENT AND THEN THINKING ABOUT POPULATIONS THAT 144 00:07:49,735 --> 00:07:55,842 WE WILL ENGAGE TO KEEP IN OUR PROGRAM AND THEN ENGAGING TO 145 00:07:55,908 --> 00:08:00,479 EQUIP RESEARCHERS AND THEN CREATING A RETURN OF VALUE 146 00:08:00,546 --> 00:08:01,480 CYCLE. 147 00:08:01,547 --> 00:08:04,750 I ALSO KNOW THAT ONE OF THE THINGS THAT THE INCLUDE PROGRAM 148 00:08:04,817 --> 00:08:08,020 WANTS TO PRIORITIZE IS TO ENGAGE AND TRAIN AND ADVANCE THE GROUP 149 00:08:08,087 --> 00:08:10,489 OF RESEARCH THAT ARE ABLE TO DO THIS WORK. 150 00:08:10,556 --> 00:08:15,061 AND WE DO THIS WORK BUILT ON PRINCIPLES OF EQUITABLE 151 00:08:15,127 --> 00:08:17,797 ENGAGEMENT. PRINCIPLES OF COMMUNITY BASED PARTICIPATORY 152 00:08:17,864 --> 00:08:21,467 RESEARCH. AND ALSO PRINCIPLES OF PARTICIPANTS AS PARTNERS. 153 00:08:21,534 --> 00:08:25,771 ONE OF THE THINGS THAT WE HAVE IN OUR ENGAGEMENT DIVISION AND 154 00:08:25,838 --> 00:08:30,409 OUTREACH THAT I LEAD IS OVER A HUNDRED 15 PARTNERS THAT MAKE UP 155 00:08:30,476 --> 00:08:31,477 OUR ENGAGEMENT ECOSYSTEM. 156 00:08:31,544 --> 00:08:35,114 WE HAVE 14 PARTNERS AT OUR NATIONAL ENGAGEMENT AWARDEE 157 00:08:35,181 --> 00:08:37,984 PARTNERS THAT INCLUDE ORGANIZATIONS WHO REPRESENT THE 158 00:08:38,050 --> 00:08:41,621 VOICE AND THE PRIORITIES OF POPULATIONS WHO HAVE BEEN 159 00:08:41,687 --> 00:08:44,457 HISTORICALLY UNDERREPRESENTED RESEARCH SUCH AS THE AMERICAN 160 00:08:44,524 --> 00:08:46,492 ASSOCIATION ON HEALTH AND DISABILITY. 161 00:08:46,559 --> 00:08:49,528 YOU HAVE BAILER CALLS AND MEDICINE WHO REALLY HELPS US TO 162 00:08:49,595 --> 00:08:51,464 ENGAGE A RESEARCH COHORT IN THIS SPACE. 163 00:08:51,530 --> 00:08:55,635 THE ASIAN HEALTH COALITION HAS HELPED US TO THINK ABOUT HOW DO 164 00:08:55,701 --> 00:08:58,070 WE ENGAGE ASIAN-AMERICAN COMMUNITIES WHO HAVE BEEN 165 00:08:58,137 --> 00:08:59,472 HISTORICALLY UNDERREPRESENTED IN RESEARCH. 166 00:08:59,538 --> 00:09:02,608 THE DELTA RESEARCH AND EDUCATION FOUNDATION IS ACTUALLY THE NOT 167 00:09:02,675 --> 00:09:06,679 FOR PROFIT ARM OF THE ONE OF THE SECOND OLDEST SORORITIES IN THE 168 00:09:06,746 --> 00:09:09,482 US, WHICH OF AFRICAN AMERICAN WOMEN, DELTA SIGMA THETA. 169 00:09:09,548 --> 00:09:12,485 THEY'RE HELPING TO THINK ABOUT HOW DO WE ENGAGE 170 00:09:12,551 --> 00:09:14,487 AFRICAN-AMERICAN COMMUNITIES WHO HAVE BEEN HISTORICALLY 171 00:09:14,553 --> 00:09:15,488 UNDERREPRESENTED IN RESEARCH. 172 00:09:15,554 --> 00:09:18,824 50 FORWARD IS A NATIONAL ORGANIZATION TO HELP US THINK 173 00:09:18,891 --> 00:09:21,494 ABOUT ENGAGING POPULATIONS THAT ARE GREATER THAN 65. 174 00:09:21,560 --> 00:09:22,528 THE NATIONAL NATIONAL ALLIANCE FOR HISPANIC HEALTH HAS BEEN AN 175 00:09:22,595 --> 00:09:23,496 AMAZING PARTNER IN HELPING US ENGAGE HISPANIC AND LATINO 176 00:09:23,562 --> 00:09:24,463 COMMUNITIES. 177 00:09:24,530 --> 00:09:28,134 AND HELPING US ENGAGE HISPANIC AND LATINO COMMUNITIES. THEY 178 00:09:28,200 --> 00:09:31,837 ALSO WERE EXTREMELY INSTRUMENTAL IN ENSURING THAT WHEN OUR 179 00:09:31,904 --> 00:09:36,342 PROGRAM LAUNCHED, IT LAUNCHED IN BOTH PSIS PARTNERS HAS BEEN A 180 00:09:36,409 --> 00:09:41,247 PART OF THAT HELPS US ENGAGE OVER A HUNDRED 15 LOCAL AND 181 00:09:41,314 --> 00:09:42,481 NATIONAL COMMUNITY PARTNERS. 182 00:09:42,548 --> 00:09:45,418 NATIONAL BAPTIST CONVENTION U.S.A. HELPS US TO ENGAGE 183 00:09:45,484 --> 00:09:47,987 SEVERAL FAITH COMMUNITIES. NATIONAL LIBRARY OF MEDICINE 184 00:09:48,054 --> 00:09:51,657 ALLOWS US TO ENGAGE RURAL COMMUNITIES AND THINK ABOUT HOW 185 00:09:51,724 --> 00:09:53,492 DO WE THINK ABOUT ACCESS. 186 00:09:53,559 --> 00:09:57,797 I KNOW THAT ACCESS AND AWARENESS IS ANOTHER THING THAT THEY 187 00:09:57,863 --> 00:10:01,334 INCLUDE PROGRAM HAS PRIORITIZED AND ALSO RTI RESEARCH TRIANGLE 188 00:10:01,400 --> 00:10:05,237 INSTITUTE HAS BEEN ONE OF OUR PARTNERS PRIDE NEXT REALLY 189 00:10:05,304 --> 00:10:08,774 INSTRUMENTAL IN HELPING US TO ENGAGE POPULATIONS WHO WILL 190 00:10:08,841 --> 00:10:11,911 REPRESENT SEXUAL AND GENDER MINORITIES AND UNIVERSITY OF 191 00:10:11,978 --> 00:10:13,479 FLORIDA AND NORTH RAIL. 192 00:10:13,546 --> 00:10:17,283 I DESCRIBE EACH OF THESE PARTNERS BECAUSE WHAT I WANT TO 193 00:10:17,350 --> 00:10:21,487 THE MESSAGE I WANT TO SAY HERE IS THAT IT REQUIRES INTENTIONAL 194 00:10:21,554 --> 00:10:22,488 COLLABORATION. 195 00:10:22,555 --> 00:10:26,092 OF PARTNERS WHO HAVE A TRUSTED RELATIONSHIP BUILT OVER TIME 196 00:10:26,158 --> 00:10:30,463 THAT WE CAN BUILD UPON THE TRUST THAT THESE PARTNERS HAVE BUILT 197 00:10:30,529 --> 00:10:34,467 TO ALLOW US TO ENGAGE COMMUNITIES IN THE ALL OF US 198 00:10:34,533 --> 00:10:35,468 RESEARCH PROGRAM. 199 00:10:35,534 --> 00:10:39,472 NEXT SLIDE. 200 00:10:39,538 --> 00:10:43,709 I ALSO WANT TO TALK ABOUT THE CONCEPT OF VALUE. ONE OF THE 201 00:10:43,776 --> 00:10:47,279 THINGS THAT WE'VE LEARNED PRIOR TO LAUNCHING THE ALL OF US 202 00:10:47,346 --> 00:10:50,549 RESEARCH PROGRAM, WE ACTUALLY HOSTED OVER 71 WHAT WE CALL 203 00:10:50,616 --> 00:10:52,485 COMMUNITY ROUNDTABLE AND COMMUNITY LISTENING SESSIONS. 204 00:10:52,551 --> 00:10:55,688 THESE LISTENING SESSIONS ALLOWED US TO THINK ABOUT WHAT WAS 205 00:10:55,755 --> 00:10:58,891 IMPORTANT TO THE COMMUNITIES THAT WE SERVE IN INCLUDING THEM 206 00:10:58,958 --> 00:11:00,493 AND ENGAGING THEM IN RESEARCH. 207 00:11:00,559 --> 00:11:04,030 ONE OF THE PIVOTAL STUDIES THAT THE INCLUDE PROGRAM HAS 208 00:11:04,096 --> 00:11:07,900 PUBLISHED IS TALKING ABOUT WHAT ARE SOME OF THE BARRIERS THAT 209 00:11:07,967 --> 00:11:10,703 HAVE PRESENTED PREVENTED CERTAIN POPULATIONS FROM BEING INCLUDED 210 00:11:10,770 --> 00:11:12,471 AND ENGAGED IN BIOMEDICAL RESEARCH. 211 00:11:12,538 --> 00:11:16,075 ONE OF THOSE KNOWN BARRIERS THAT BOTH INCLUDE PROGRAM AS 212 00:11:16,142 --> 00:11:20,046 IDENTIFIED AS WELL AS THAT WE'VE IDENTIFIED THE ALL OF US 213 00:11:20,112 --> 00:11:21,480 RESEARCH PROGRAM IS TRUST. 214 00:11:21,547 --> 00:11:26,519 AND A LOT OF THAT TRUST THAT WE HAVE TO BUILD UPON IS ABOUT 215 00:11:26,585 --> 00:11:29,388 RELATIONSHIP BUILDING. FOR EXAMPLE, THIS PICTURE HERE IS 216 00:11:29,455 --> 00:11:32,958 ACTUALLY HIGHLIGHTING A TOWN HALL THAT WE'VE HAD IN TUSKEGEE, 217 00:11:33,025 --> 00:11:35,861 ALABAMA TO ADDRESS THE HISTORICAL MEDICAL MISTRUST THAT 218 00:11:35,928 --> 00:11:39,465 WE KNOW THAT EXISTS IN CERTAIN COMMUNITIES SUCH AS THE 219 00:11:39,532 --> 00:11:40,466 AFRICAN-AMERICAN COMMUNITY. 220 00:11:40,533 --> 00:11:44,303 FOR EXAMPLE, WE HAVE THE UNITED STATES PUBLIC HEALTH SERVICE 221 00:11:44,370 --> 00:11:47,773 STUDY THAT STUDIED UNTREATED SYPHILIS IN THE AFRICAN AMERICAN 222 00:11:47,840 --> 00:11:50,476 MAIL THAT TOOK PLACE IN TUSKEGEE, ALABAMA. 223 00:11:50,543 --> 00:11:54,647 AS A RESULT OF STUDIES AND STUDIES LIKE THIS THAT WE KNOW 224 00:11:54,713 --> 00:11:57,016 THAT CERTAIN COMMUNITIES HAVE JUSTIFIED AND UNDERSTANDABLE 225 00:11:57,083 --> 00:12:00,486 MEDICAL MISTRESS AND HOW THEY WILL BE ENGAGED IN GENOMIC 226 00:12:00,553 --> 00:12:01,487 RESEARCH. 227 00:12:01,554 --> 00:12:06,225 BUT MORE IMPORTANTLY THAN THE LACK OF THE TRUST IS ALSO THE 228 00:12:06,292 --> 00:12:10,129 ACCESS AND AWARENESS. SO WE BELIEVE IN HAVING PARTNERS, OUR 229 00:12:10,196 --> 00:12:14,467 PARTICIPANT VOICES AT THE TABLE WITH US TO ADDRESS THESE ISSUES 230 00:12:14,533 --> 00:12:15,468 FOR HEAD-ON. 231 00:12:15,534 --> 00:12:19,672 IN THIS PICTURE ACTUALLY SHOWS MISS LILY HEAD, WHO IS A 232 00:12:19,738 --> 00:12:23,509 DESCENDANT OF ONE OF THE FORMER PARTICIPANTS OF THE UNITED 233 00:12:23,576 --> 00:12:26,946 STATES PUBLIC HEALTH SERVICE STUDY OF UNTREATED SYPHILIS IN 234 00:12:27,012 --> 00:12:28,481 THE AFRICAN AMERICAN MALE. 235 00:12:28,547 --> 00:12:32,651 IT ALSO INCLUDES THE VOICE OF THE GREAT-GRANDDAUGHTER OF 236 00:12:32,718 --> 00:12:34,487 HENRIETTA LACKS, VERONICA ROBINSON. 237 00:12:34,553 --> 00:12:36,722 SO HAVING PARTICIPANTS AS PARTNERS AND TELL US HOW WE CAN 238 00:12:36,789 --> 00:12:39,758 DO THIS WORK AND TELL US HOW WE CAN DO THIS WORK IN A MORE 239 00:12:39,825 --> 00:12:42,194 ETHICAL, INCLUSIVE, HOW WE CAN DO THIS WORK IN A MORE ETHICAL, 240 00:12:42,261 --> 00:12:44,230 INCLUSIVE AND ENGAGED WAY ENSURES THAT OUR PROGRAM IS, AND 241 00:12:44,296 --> 00:12:46,465 ENGAGED WAY ENSURES THAT OUR PROGRAM IS VALUED THE VOICE OF 242 00:12:46,532 --> 00:12:47,466 OUR PARTICIPANTS AS PARTNERS AND 243 00:12:47,533 --> 00:12:50,636 EVEN HOW WE RETURN INFORMATION TO OUR PARTICIPANTS AS PARTNERS 244 00:12:50,703 --> 00:12:53,472 AND EVEN HOW WE RETURN INFORMATION TO OUR PARTICIPANTS. 245 00:12:53,539 --> 00:12:54,473 NEXT SLIDE. 246 00:12:54,540 --> 00:12:56,876 SO ONE OF THE WAYS THAT WE DO OUR COMMUNITY ENGAGEMENT IS 247 00:12:56,942 --> 00:12:58,677 ACTUALLY BY ADAPTING A SOCIAL ECOLOGICAL MODEL THAT THINKS 248 00:12:58,744 --> 00:13:00,479 ABOUT HOW DO WE ENGAGE PARTICIPANTS AS PARTNERS ACROSS 249 00:13:00,546 --> 00:13:01,480 THE LIFE COURSE. 250 00:13:01,547 --> 00:13:06,185 AS INDIVIDUALS THINKING ABOUT THE INDIVIDUAL FIRST AND 251 00:13:06,252 --> 00:13:11,524 INTERPERSONAL AND THINKING ABOUT HOW FAMILIES AND CAREGIVERS ARE 252 00:13:11,590 --> 00:13:17,463 INVOLVED IN THIS WORK, BUT ALSO COMMUNITY PARTNERS AND ADVOCACY 253 00:13:17,530 --> 00:13:18,464 ORGANIZATIONS. 254 00:13:18,531 --> 00:13:21,600 AND THEN UNDERSTANDING THE IMPACT OF CULTURE AND SOCIETY. 255 00:13:21,667 --> 00:13:25,437 SO WE DO THIS THROUGH AN ECOLOGICAL APPROACH. WE LOOK AT 256 00:13:25,504 --> 00:13:26,472 OUTREACH AND AWARENESS. 257 00:13:26,539 --> 00:13:31,510 WE LOOK AT EDUCATION AND ACCESS. WE LOOK AT ENGAGING TO ENROLL 258 00:13:31,577 --> 00:13:35,281 AND RETAIN AND PARTICIPANTS AS PARTNERS WITH THE FULL 259 00:13:35,347 --> 00:13:38,217 INTEGRATION OF ENGAGED PARTICIPANTS TO ELEVATE THEIR 260 00:13:38,284 --> 00:13:41,554 VOICES, EXPERTISE AND EXPERIENCE AS COLLABORATORS TO CO-DESIGN, 261 00:13:41,620 --> 00:13:44,490 PROVIDE FEEDBACK AND CHAMPION THE RESEARCH PROGRAM. 262 00:13:44,557 --> 00:13:48,127 AND WE ALSO LOOK AT KNOWLEDGE MOBILIZATION. SO I'M TRAINED AS 263 00:13:48,194 --> 00:13:49,461 A CANCER DISPARITIES RESEARCHER. 264 00:13:49,528 --> 00:13:52,298 AND ONE OF THE THINGS THAT I KNOW IS THAT MANY TIMES THE 265 00:13:52,364 --> 00:13:54,733 RESEARCH THAT WE CONDUCT THOSE FINDINGS DON'T ALWAYS GET IN THE 266 00:13:54,800 --> 00:13:56,468 HANDS OF THE PEOPLE THAT NEED THE INFORMATION. 267 00:13:56,535 --> 00:14:01,173 THE MOST WE OFTEN THINK IN THE ACADEMIC SPACE THAT PUBLISHING 268 00:14:01,240 --> 00:14:05,477 OR CONFERENCES IS THE WAY TO GET OUR DATA OUT. 269 00:14:05,544 --> 00:14:09,682 BUT IN THE ALL OF US RESEARCH PROGRAM, WE PRIORITIZE KNOWLEDGE 270 00:14:09,748 --> 00:14:12,718 MOBILIZATION. BEYOND JUST THE PUBLICATION BEYOND JUST THE 271 00:14:12,785 --> 00:14:16,555 CONFERENCES, BUT THINKING ABOUT HOW CAN WE ENGAGE COMMUNITIES TO 272 00:14:16,622 --> 00:14:20,726 UNDERSTAND THE DATA THAT WE'RE FINDING, TO BE ABLE TO UTILIZE 273 00:14:20,793 --> 00:14:24,930 THE DATA THAT WE'RE FINDING SO THAT THEY CAN ASK INFORMED 274 00:14:24,997 --> 00:14:26,465 HEALTH QUESTIONS THAT CAN 275 00:14:26,532 --> 00:14:32,471 HELP INCLUDE THEM IN THIS PROCESS. NEXT SLIDE. 276 00:14:32,538 --> 00:14:36,775 THESE ARE SOME EXAMPLES OF HOW WE OPERATIONALIZE OUR ECOLOGICAL 277 00:14:36,842 --> 00:14:40,179 FRAMEWORK FOR COMMUNITY ENGAGEMENT. SO WE THINK ABOUT 278 00:14:40,246 --> 00:14:41,480 OUTREACH AND AWARENESS. 279 00:14:41,547 --> 00:14:46,919 AN EXAMPLE IS HERE OF OUR ASIAN HEALTH COALITION. THEY WERE ABLE 280 00:14:46,986 --> 00:14:51,423 TO REACH OVER 158,000 PARTNERS ACROSS THE NATION THROUGH 391 281 00:14:51,490 --> 00:14:55,494 VIRTUAL AND IN-PERSON EVENTS CONDUCTED BY OVER 22 PARTNERS. 282 00:14:55,561 --> 00:14:59,098 WE THINK ABOUT EDUCATION AND ACCESS. NATIONAL LINES FOR 283 00:14:59,164 --> 00:15:03,102 HISPANIC HEALTH COLLABORATED WITH ONE OUR BAND HERE THAT YOU 284 00:15:03,168 --> 00:15:07,072 SEE HERE, WHICH WE CALL OUR MOBILE ENGAGEMENT ASSET TO 285 00:15:07,139 --> 00:15:10,676 COORDINATE EVENTS WHICH HAVE RESULTED IN ALMOST 2,000 QUALITY 286 00:15:10,743 --> 00:15:13,879 CONVERSATIONS AND OVER 200 PEOPLE HAVE CREATED ACCOUNTS 287 00:15:13,946 --> 00:15:15,481 FROM THESE QUALITY CONVERSATIONS. 288 00:15:15,547 --> 00:15:19,018 AND WE THINK ABOUT ENGAGING TO ENROLL AND RETAIN PARTICIPANTS 289 00:15:19,084 --> 00:15:22,921 IN OUR PROGRAM. PICTS AS PARTNERS AS I NOTED HAVE CREATED 290 00:15:22,988 --> 00:15:26,825 THE NETWORK OF OVER 151 PARTNERS ACROSS THE US THAT INCLUDES 291 00:15:26,892 --> 00:15:29,662 ORGANIZATIONS LIKE THE NATIONAL RURAL HEALTH ASSOCIATION BECAUSE 292 00:15:29,728 --> 00:15:33,565 WE KNOW MANY TIMES ACCESS TO CLINICAL TRIALS AND ACCESS TO 293 00:15:33,632 --> 00:15:37,469 ACADEMIC MEDICAL CENTERS CAN BE A CHALLENGE AND A BURDEN FOR 294 00:15:37,536 --> 00:15:41,240 OUR PARTNERS TO PARTICIPATE AND THEN PARTICIPANT AS PARTNERS. 295 00:15:41,307 --> 00:15:45,010 TODAY THE PROGRAM INCLUDES 35 PARTICIPANT AMBASSADORS AT 10 296 00:15:45,077 --> 00:15:48,380 PARTICIPANT PARTNERS WHO SERVE ON STEERING COMMITTEES AND 297 00:15:48,447 --> 00:15:50,482 EXECUTIVE COMMUNITIES AND ADVISORY PANEL. 298 00:15:50,549 --> 00:15:53,752 AND WITH OUR PARTNERS THROUGH THE NIGHT PROGRAM THROUGH 299 00:15:53,819 --> 00:15:57,389 NORTHWELL HEALTH, WE'VE BEEN ABLE TO CONDUCT WHAT WE CALL 300 00:15:57,456 --> 00:15:58,490 COMMUNITY SANDBOX WORKSHOPS. 301 00:15:58,557 --> 00:16:04,463 WE PROMOTE THE USE OF OUR DATA WITH OVER 53 PARTICIPANTS TODAY. 302 00:16:04,530 --> 00:16:05,464 NEXT SLIDE. 303 00:16:05,531 --> 00:16:10,469 THIS IS AN EXAMPLE OF ONE THAT I WAS REALLY EXCITED ABOUT THAT WE 304 00:16:10,536 --> 00:16:13,672 TO BE ABLE TO DEMONSTRATE HOW PARTICIPATION OUR PROGRAM 305 00:16:13,739 --> 00:16:15,474 DESIGN, IMPLEMENTATION, AND EVEN GOVERNANCE. 306 00:16:15,541 --> 00:16:19,011 THE PICTURE YOU SEE ON THE RIGHT HERE IS A PICTURE OF ONE OF OUR 307 00:16:19,078 --> 00:16:20,479 PARTICIPANT AMBASSADORS WHO'S PARTICIPANT IN THE PROGRAM 308 00:16:20,546 --> 00:16:21,480 MICHELLE. 309 00:16:21,547 --> 00:16:25,150 THIS IS AN IMAGE WHERE MICHELLE WAS ACTUALLY HER STORY WAS 310 00:16:25,217 --> 00:16:28,153 ACTUALLY TOLD AND THE PEOPLE MAGAZINE RECENTLY TO HIGHLIGHT 311 00:16:28,220 --> 00:16:32,157 HER JOURNEY AND WHY MICHELLE'S SAID IT WAS SO IMPORTANT FOR HER 312 00:16:32,224 --> 00:16:34,493 TO PARTICIPATE IN THE OLIVER'S RESEARCH PROGRAM. 313 00:16:34,560 --> 00:16:37,329 AND THE PICTURE YOU SEE ON THE LEFT THERE IS ACTUALLY WHERE WE 314 00:16:37,396 --> 00:16:39,465 HAVE OUR PARTICIPANT AMBASSADORS WHO JOINED ALL OF OUR RESEARCH 315 00:16:39,531 --> 00:16:40,466 PARTNERS. 316 00:16:40,532 --> 00:16:44,470 AND ONE OF OUR NATIONAL CONVENIENCE TO TALK ABOUT THE 317 00:16:44,536 --> 00:16:48,474 IMPORTANCE OF THE PARTICIPANT VOICE IN PARTNERING WITH US IN 318 00:16:48,540 --> 00:16:49,475 THIS PROGRAM. 319 00:16:49,541 --> 00:16:56,482 NEXT SLIDE. 320 00:16:56,548 --> 00:16:57,816 AND PRIORITIZING INTERSECTIONALITY AND SOCIAL 321 00:16:57,883 --> 00:17:00,352 DETERMINANTS OF HEALTH AND BIOMEDICAL RESEARCH. SO ONE OF 322 00:17:00,419 --> 00:17:04,089 THE THINGS THAT THE ALL OF US DATA SET IS REALLY COMMITTED TO 323 00:17:04,156 --> 00:17:06,325 IS MAKING SURE THAT WE UNDERSTAND HOW BIOLOGY, 324 00:17:06,392 --> 00:17:08,594 ENVIRONMENT AND LIFESTYLE FACTORS, HOW THEY CAN INTERSECT 325 00:17:08,660 --> 00:17:11,463 HOW THESE RESEARCH FOCUSES ON THE INTERSECTIONALITY OF THESE 3 326 00:17:11,530 --> 00:17:12,464 FACTORS. 327 00:17:12,531 --> 00:17:18,237 SO FOR EXAMPLE, WE KNOW THAT OVER ALMOST 14% OF OUR 328 00:17:18,303 --> 00:17:23,475 PARTICIPANTS HAVE ANNUAL INCOME FROM LESS THAN $10,000 A YEAR. 329 00:17:23,542 --> 00:17:26,612 ABOUT 5.8% OF OUR PARTICIPANTS THEIR HIGHEST GRADE LEVEL 330 00:17:26,678 --> 00:17:29,782 ACHIEVE IS NINTH THROUGH ELEVENTH GRADE. ABOUT 6.5% OF 331 00:17:29,848 --> 00:17:33,285 OUR PARTICIPANTS ARE NOT COVERED BY HEALTH INSURANCE AND ALMOST 332 00:17:33,352 --> 00:17:36,755 17% OF OUR PARTICIPANTS HAVE NOTED THAT THEY'VE BEEN WORRIED 333 00:17:36,822 --> 00:17:41,326 OR CONCERNED ABOUT NOT HAVING A PLACE TO LIVE WITHIN THE LAST 6 334 00:17:41,393 --> 00:17:44,463 MONTHS WHEN TAKING THE SOCIAL TERMS OF HEALTH SERVING. 335 00:17:44,530 --> 00:17:48,367 SO WHAT WHAT AMAZING VALUE THAT THAT INFORMATION WOULD HAVE, WE 336 00:17:48,434 --> 00:17:51,203 CONNECT THAT INFORMATION WITH GENETIC INFORMATION THAT WE 337 00:17:51,270 --> 00:17:54,406 RECEIVE BY ALLOWING INFORMATION THAT WE RECEIVE AND EVEN 338 00:17:54,473 --> 00:17:55,474 UNDERSTANDING ENVIRONMENTAL FACTORS. 339 00:17:55,541 --> 00:17:59,878 ALL OF THIS INFORMATION WOULD ALLOW US TO BETTER UNDERSTAND 340 00:17:59,945 --> 00:18:03,415 INTERSECTIONALITY ACROSS THE LIFE COURSE TO ASK RESEARCH 341 00:18:03,482 --> 00:18:06,485 QUESTIONS THAT REALLY PRIORITIZE US ADDRESSING HEALTH 342 00:18:06,552 --> 00:18:07,486 DISPARITIES. 343 00:18:07,553 --> 00:18:11,490 NEXT SLIDE. 344 00:18:11,557 --> 00:18:15,194 SO PRIORITIZING SECTIONALITY AS I NOTED, ANOTHER PIECE THAT WE 345 00:18:15,260 --> 00:18:19,264 LIKE TO PRIORITIZE AND NOTE IS THAT IN ADDITION TO INCLUDING 346 00:18:19,331 --> 00:18:22,601 DIVERSE POPULATIONS BY RACE AND ETHNICITY, WE'VE ALSO INCLUDED 347 00:18:22,668 --> 00:18:24,470 POPULATIONS ACROSS THE LIFE COURSE. 348 00:18:24,536 --> 00:18:27,806 WE ARE ABLE TO BUILD BETTER TOOLS FOR DETECTING HEALTH 349 00:18:27,873 --> 00:18:30,476 CONDITIONS, FIND OUT HOW ENVIRONMENT LIFESTYLE AND GENES 350 00:18:30,542 --> 00:18:34,146 CAN IMPACT HELP AND IDENTIFY WHAT PEOPLE ARE MORE LIKELY TO 351 00:18:34,213 --> 00:18:36,482 DEVELOP DISEASE BY HAVING A DIVERSE COHORT. 352 00:18:36,548 --> 00:18:41,019 AND ON THIS THIS BAR GRAPH HERE, YOU SEE SOME OF THE DIVERSITY 353 00:18:41,086 --> 00:18:44,523 THAT WE HAVE IN OUR COHORT, INCLUDING POPULATIONS THAT ARE 354 00:18:44,590 --> 00:18:48,026 SECTIONS IN A MINORITY ABOUT 10% AND ALSO INCLUDING POPULATIONS 355 00:18:48,093 --> 00:18:50,462 WHO ARE LIVING IN RURAL COMMUNITY AREAS. 356 00:18:50,529 --> 00:18:54,466 NEXT SLIDE. 357 00:18:54,533 --> 00:18:57,402 FOR EXAMPLE, ANOTHER WAY WE PARTNER WITH OUR NATIONAL 358 00:18:57,469 --> 00:19:00,973 ENGAGEMENT PARTNERS IS TO REALLY FOR US, WE HAVE SOMETHING THAT 359 00:19:01,039 --> 00:19:05,210 WE SAY IN OUR PROGRAM IS NOTHING ABOUT US WITHOUT US BY INVITING 360 00:19:05,277 --> 00:19:07,479 POPULATIONS LIVING WITH DISABILITIES TO CONTRIBUTE TO. 361 00:19:07,546 --> 00:19:07,713 BY INVITING POPULATIONS LIVING WITH DISABILITIES TO CONTRIBUTE 362 00:19:07,779 --> 00:19:08,013 TO RESEARCH, TO CONTRIBUTE TO RESEARCH, TO CONTRIBUTE TO 363 00:19:08,080 --> 00:19:08,247 RESEARCH, TO ADVANCING INDIVIDUALIZED TREATMENT AND 364 00:19:08,313 --> 00:19:08,480 CARE FOR ALL. 365 00:19:08,547 --> 00:19:10,616 ONE OF OUR PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH 366 00:19:10,682 --> 00:19:12,784 AND DISABILITY TREATMENT AND CARE FOR ALL. ONE OF OUR 367 00:19:12,851 --> 00:19:14,486 PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH AND 368 00:19:14,553 --> 00:19:15,487 DISABILITY. 369 00:19:15,554 --> 00:19:16,889 THEY'VE BEEN INSTRUMENTALIZED TREATMENT AND CARE FOR ALL. ONE 370 00:19:16,955 --> 00:19:18,490 OF OUR PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH AND 371 00:19:18,557 --> 00:19:19,491 DISABILITY. 372 00:19:19,558 --> 00:19:20,492 THEY'VE BEEN INSTRUMENTAL IN THINKING ABOUT HOW DO WE DEFINE 373 00:19:20,559 --> 00:19:21,493 DEFINITIONS, FOR EXAMPLE, OF PARTNERS, DISABILITY DEFINITIONS 374 00:19:21,560 --> 00:19:22,494 AND METRICS. 375 00:19:22,561 --> 00:19:25,764 ALSO OUR COMMUNITY ADVISORY BOARD AND OUR WORKBENCH USERS. 376 00:19:25,831 --> 00:19:29,034 AND NOW THEY'RE ACTUALLY THINKING ABOUT HOW CAN WE 377 00:19:29,101 --> 00:19:31,570 INCLUDE MORE POPULATIONS EVEN POPULATIONS WITH INTELLECTUAL 378 00:19:31,637 --> 00:19:34,473 DISK LIVING WITH INTELLECTUAL DISABILITIES IN OUR PROGRAM. 379 00:19:34,540 --> 00:19:39,011 HOW CAN WE BE EVEN MORE INCLUSIVE? AND SO THIS IS ONE OF 380 00:19:39,077 --> 00:19:42,481 THE BENEFITS OF HAVING NATIONAL PARTNERS WHO CAN REPRESENT THIS 381 00:19:42,548 --> 00:19:43,482 SPACE. 382 00:19:43,549 --> 00:19:46,485 NEXT SLIDE. AND I DO SEE THAT THERE'S QUESTIONS IN THE CHAT 383 00:19:46,552 --> 00:19:49,254 AND I BELIEVE THAT WE'LL HAVE OPPORTUNITIES AT THE END TO 384 00:19:49,321 --> 00:19:50,489 ADDRESS SOME OF THOSE QUESTIONS. 385 00:19:50,556 --> 00:19:51,156 ANOTHER EXAMPLE I WANT TO POINT OUT IS THE PARTNERSHIP WITH 386 00:19:51,223 --> 00:19:51,823 ORGANIZATIONS LIKE PRIDE NET. THEY'VE BEEN INSTRUMENTAL IN 387 00:19:51,890 --> 00:19:52,491 HELPING US TO ENGAGE POTENTIAL POPULATIONS. 388 00:19:52,558 --> 00:19:59,164 WHERE WE THINK ABOUT WHAT ARE SOME OF THE BARRIERS THAT 389 00:19:59,231 --> 00:20:04,636 POPULATIONS WHO ARE SECTION GENDER MINORITIES HAVE HAD AND 390 00:20:04,703 --> 00:20:06,471 PARTICIPATED IN RESEARCH. 391 00:20:06,538 --> 00:20:09,875 BUT ANOTHER THING THAT PRINET HAS DONE THAT I KNOW IS 392 00:20:09,942 --> 00:20:12,945 IMPORTANT TO THIS GROUP AS WELL IS ENSURING THAT RESEARCHERS 393 00:20:13,011 --> 00:20:16,381 UNDERSTAND HOW TO THE LANGUAGE THAT CAN BE USED IN ENGAGING 394 00:20:16,448 --> 00:20:19,484 THIS POPULATION AND THE CULTURE VALUES THAT CAN INCLUDE TO 395 00:20:19,551 --> 00:20:20,485 ENGAGE THIS POPULATION. 396 00:20:20,552 --> 00:20:23,488 NEXT SLIDE. 397 00:20:23,555 --> 00:20:26,058 SO THESE ARE JUST SOME OF THE MULTIPLE WAYS I FEEL THAT WE CAN 398 00:20:26,124 --> 00:20:27,492 WORK TOGETHER TO DEVELOP MORE APPROPRIATE COMMUNITY AWARENESS 399 00:20:27,559 --> 00:20:28,493 ABOUT TRIALS, ACCESS AND AWARENESS. 400 00:20:28,560 --> 00:20:32,331 AND DEVELOPED APPROPRIATE MATERIALS TO ASSESS HEALTH 401 00:20:32,397 --> 00:20:37,269 OUTCOMES, QUALITY OF LIFE AND OTHER CONDITIONS THAT ARE 402 00:20:37,336 --> 00:20:39,471 IMPORTANT TO ALL COMMUNITIES. 403 00:20:39,538 --> 00:20:41,373 NEXT SLIDE. THIS IS HOW YOU CAN LEARN MORE ABOUT THE OLIVER'S 404 00:20:41,440 --> 00:20:42,474 RESEARCH PROGRAM BY VISITING ALL OF US. 405 00:20:42,541 --> 00:20:49,147 DOT ORG AND SCAN THIS QR CODE OR ALSO TO FIND OUT HOW YOU MAY BE 406 00:20:49,214 --> 00:20:53,318 ABLE TO DEVELOP TO INFORM QUESTIONS YOU HAVE ABOUT THE 407 00:20:53,385 --> 00:20:57,489 ALBANS RESEARCH PROGRAM AND HOW WE CAN BE MORE INCLUSIVE. 408 00:20:57,556 --> 00:21:01,493 NEXT SLIDE. 409 00:21:01,560 --> 00:21:05,697 MY CONTENT INFORMATION IS HERE AND I LOOK FOR I THANK YOU ALL 410 00:21:05,764 --> 00:21:09,568 FOR THIS OPPORTUNITY AND I LOOK FORWARD TO JOINING YOU ALL IN 411 00:21:09,635 --> 00:21:12,471 THE QUESTION AND ANSWER SESSION LATER ON THIS AFTERNOON. 412 00:21:12,537 --> 00:21:15,474 THANK YOU, DR. WATSON. CAN YOU ALL HEAR ME? 413 00:21:15,540 --> 00:21:16,475 YES, WE CAN. 414 00:21:16,541 --> 00:21:20,579 GREAT. SO I KNOW I WAS CUT OFF WHEN I WAS INTRODUCING THE 415 00:21:20,646 --> 00:21:22,481 SPEAKER. SO I WOULD REINTRODUCE DR. 416 00:21:22,547 --> 00:21:27,853 AMELIE RAMIREZ. SHE IS A PROFESSOR AND CHAIR OF THE 417 00:21:27,919 --> 00:21:32,691 DEPARTMENT OF POPULATION HEALTH SCIENCES AT UT HEALTH SAN 418 00:21:32,758 --> 00:21:36,461 ANTONIO, WHICH IS A HISPANIC SERVING INSTITUTE. 419 00:21:36,528 --> 00:21:42,467 SHE IS A HEALTH EQUITY PIONEER WHO HAS ACHIEVED NATIONAL AND 420 00:21:42,534 --> 00:21:46,304 INTERNATIONAL RECOGNITION FOR HER SUBSTANCES IN REDUCING 421 00:21:46,371 --> 00:21:48,473 LATINO CANCER HEALTH DISPARITIES. 422 00:21:48,540 --> 00:21:53,478 SHE HAS BEEN RECOGNIZED BY OPRAH WINFREY. OBAMA WHITE HOUSE, 423 00:21:53,545 --> 00:21:56,481 SUSAN G. COLEMAN, AND MANY MORE. 424 00:21:56,548 --> 00:21:59,484 WELCOME, DR. RAMIREZ. 425 00:21:59,551 --> 00:22:14,099 THANK YOU SO MUCH. IT'S REALLY A PLEASURE TO BE HERE WITH ALL OF 426 00:22:14,166 --> 00:22:22,474 YOU. SO BIG GRASS, YES. THANK YOU AGAIN. 427 00:22:22,541 --> 00:22:25,977 I'M REALLY LOOKING FORWARD TO SHARING MY INFORMATION IF I 428 00:22:26,044 --> 00:22:29,481 COULD HAVE MY SLIDES PULLED UP THAT WOULD BE GREAT. 429 00:22:29,548 --> 00:22:29,981 AND THANK YOU, DR. WATSON, FOR THAT AMAZING. PRESENTATION ON 430 00:22:30,048 --> 00:22:30,482 THE ALL OF US PROGRAMS. 431 00:22:30,549 --> 00:22:44,362 MY PRESENTATION IS REALLY GOING TO FOCUS MORE ON THE LATINO 432 00:22:44,429 --> 00:22:54,473 COMMUNITY, THE HISPANIC COMMUNITY HERE IN THE US. 433 00:22:54,539 --> 00:22:58,276 MANY OF YOU KNOW THAT THE LATINO COMMUNITY HAS REALLY GROWN 434 00:22:58,343 --> 00:23:02,080 SIGNIFICANTLY HERE IN THE UNITED STATES AND I'D LIKE TO MENTION 435 00:23:02,147 --> 00:23:06,218 THAT THAT DISNEY MOVIE CALLED IN CANTO, THERE IS A BYLINE THAT 436 00:23:06,284 --> 00:23:10,388 SAID THERE WE DON'T TALK ABOUT BRUNO SOMETIMES I FEEL HERE IN 437 00:23:10,455 --> 00:23:13,492 THE UNITED STATES WE DON'T TALK ABOUT LATINO OR 438 00:23:13,558 --> 00:23:17,629 HISPANICS AND AND EVEN JUST THE TERMS THAT WE USE TO DESCRIBE 439 00:23:17,696 --> 00:23:20,398 OUR POPULATIONS OR SOMETIMES CONTROVERSIAL. THE TERM HISPANIC 440 00:23:20,465 --> 00:23:23,835 IS A GOVERNMENT TERM AND SO INDIVIDUALS FROM LATIN AMERICA 441 00:23:23,902 --> 00:23:27,606 PREFERRED TO BE CALLED LATINOS AND WE SEE THIS DIFFERENCE FROM 442 00:23:27,672 --> 00:23:32,444 THE EAST AND WEST COAST IN TERMS OF HOW WE SOMETIMES REFER TO OUR 443 00:23:32,511 --> 00:23:33,478 OWN, SPANISH DESCENT. 444 00:23:33,545 --> 00:23:38,583 AND AS YOU CAN SEE HERE IN THIS MAP, OR YOU KNOW, THE HIGHEST 445 00:23:38,650 --> 00:23:42,554 CONCENTRATION OF LATINOS TEND TO BE IN TEXAS IN CALIFORNIA, BUT 446 00:23:42,621 --> 00:23:46,925 OVER THE YEARS WE HAVE LATINOS AND ALMOST EVERY COUNTY HERE IN 447 00:23:46,992 --> 00:23:50,929 THE UNITED STATES AND EVEN IN SOME OF OUR MOST NORTHERN 448 00:23:50,996 --> 00:23:54,566 COUNTIES SUCH AS THE DAKOTAS WE'RE SEEING INCREASES IN SOME 449 00:23:54,633 --> 00:23:57,469 OF OUR MOST NORTHERN COUNTIES SUCH AS THE 450 00:23:57,536 --> 00:24:00,438 DAKOTAS WE'RE SEEING INCREASES IN OUR HISPANIC POPULATION. 451 00:24:00,505 --> 00:24:04,176 HOWEVER, OUR COMMUNITY TRULY HAS SOME MAJOR CHALLENGES IN TERMS 452 00:24:04,242 --> 00:24:08,647 OF THEIR THEY TEND TO BE THE EDUCATION LEVELS TEND TO BE 453 00:24:08,713 --> 00:24:13,118 LOWER OUR INCOMES TEND TO BE LOWER AS WELL WE HAVE HIGHER 454 00:24:13,185 --> 00:24:16,488 RATES OF POVERTY HAVE POOR ACCESS TO HEALTH CARE. 455 00:24:16,555 --> 00:24:16,822 AND SO FOR ME IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO. AND SO 456 00:24:16,888 --> 00:24:17,155 FOR ME, IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO REACH, 457 00:24:17,222 --> 00:24:17,489 HAVE SPECIAL EFFORTS TO REACH OUT AND FOR OUR COMMUNITIES. 458 00:24:17,556 --> 00:24:23,128 AND SO FOR ME, IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO REACH 459 00:24:23,195 --> 00:24:27,465 HAVE SPECIAL EFFORTS TO REACH OUT AND FOR OUR COMMUNITIES. 460 00:24:27,532 --> 00:24:31,970 AND MY EFFORTS HAVE BEEN FOCUSING PREDOMINANTLY IN THE 461 00:24:32,037 --> 00:24:37,976 AREA OF CANCER, BUT I'VE ON THE NEXT SLIDE, LATELY WE'VE BEEN, 462 00:24:38,043 --> 00:24:39,477 FOCUSING NEXT SLIDE. 463 00:24:39,544 --> 00:24:44,482 HAVE REALLY BEEN FOCUSING ON CLINICAL TRIALS. WE KNOW THAT 464 00:24:44,549 --> 00:24:49,487 IT'S VERY IMPORTANT TO HAVE, MEDICATIONS THAT WORK FOR ALL 465 00:24:49,554 --> 00:24:50,488 POPULATION GROUPS. 466 00:24:50,555 --> 00:24:55,560 BUT THERE HAS BEEN AN AMAZING UNDERREPRESENTATION OF DIVERSE 467 00:24:55,627 --> 00:25:00,098 AUDIENCES IN CLINICAL TRIALS AND VERY LIMITED INFORMATION 468 00:25:00,165 --> 00:25:03,468 AVAILABLE BY RACIAL AND ETHNIC GROUPS. 469 00:25:03,535 --> 00:25:09,140 SO IN THIS SLIDE, EVEN THOUGH LATINOS NOW MAKE UP 19% OF THE 470 00:25:09,207 --> 00:25:12,177 US POPULATION, THE LARGEST UNDERREPRESENTED POPULATION IN 471 00:25:12,244 --> 00:25:13,478 THE UNITED STATES. 472 00:25:13,545 --> 00:25:19,451 WE ONLY REPRESENT ABOUT 4% OF SOME OF THE FDA TRIALS AND LESS 473 00:25:19,517 --> 00:25:24,489 THAN 10% OF SOME OF THE NIH TRIALS AND AS DR. 474 00:25:24,556 --> 00:25:27,926 WATSON MENTIONED EVEN LESS FROM GENOMICS RESEARCH AND AS WE 475 00:25:27,993 --> 00:25:30,695 BECOME MORE IMPORTANT WITH REGARDS TO PRECISION MEDICINE, 476 00:25:30,762 --> 00:25:33,465 KNOWING MORE ABOUT OUR GENOMICS IS VERY IMPORTANT. 477 00:25:33,531 --> 00:25:40,171 AND THEN IF YOU TRY TO DISTILL THAT DOWN TO KNOWING MORE ABOUT 478 00:25:40,238 --> 00:25:44,309 POPULATIONS WITH DISABILITY BY THEIR DIFFERENT RACIAL AND 479 00:25:44,376 --> 00:25:48,413 ETHNIC BACKGROUNDS, YOU'LL REALIZE THAT THE NUMBER, YEAH, 480 00:25:48,480 --> 00:25:50,482 ALSO BECOMES EXTREMELY SMALL. 481 00:25:50,548 --> 00:25:55,020 SO ON THE NEXT SLIDE, WE TALKED A LITTLE BIT ABOUT THE BARRIERS 482 00:25:55,086 --> 00:25:58,490 TO CLINICAL TRIAL PARTICIPATION. AND AS WAS MENTIONED BY DR. 483 00:25:58,556 --> 00:26:01,459 WATSON, YOU KNOW, THE LACK OF AWARENESS OF JUST TRIALS. WHY 484 00:26:01,526 --> 00:26:04,462 ARE TRIALS IMPORTANT? WHY IS IT IMPORTANT FOR US TO PARTICIPATE 485 00:26:04,529 --> 00:26:05,463 IN THESE OPPORTUNITIES. 486 00:26:05,530 --> 00:26:10,168 THERE'S ALSO LESS KNOWLEDGE ABOUT THE DISEASE AND TREATMENT 487 00:26:10,235 --> 00:26:16,474 OPTIONS AND HOW BEING IN A TRIAL IS ACTUALLY A TREATMENT OPTION. 488 00:26:16,541 --> 00:26:20,545 AND THEN WE HAVE OUR CULTURAL, OUR LANGUAGE AND LITERACY 489 00:26:20,612 --> 00:26:24,215 ISSUES, YOU KNOW, ARE THEM INFORMATION AVAILABLE AT A 490 00:26:24,282 --> 00:26:27,485 READING LEVEL WHERE OUR COMMUNITY FULLY UNDERSTANDS IT. 491 00:26:27,552 --> 00:26:32,357 DO WE HAVE PICTURES THAT REFLECT US IN IN THE PRINTED MATERIALS 492 00:26:32,424 --> 00:26:36,828 THAT ARE AVAILABLE. AND THEN LAST BUT NOT LEAST, THE WHOLE 493 00:26:36,895 --> 00:26:41,299 ISSUE OF COST MANY TIMES TO PARTICIPATE IN A CLINICAL TRIAL, 494 00:26:41,366 --> 00:26:47,405 YOU HAVE TO BE ABLE TO PAY FOR SOME OF THE BASIC LABS THAT ARE 495 00:26:47,472 --> 00:26:51,476 REQUIRED TO SEE IF YOU ARE ELIGIBLE FOR A TRIAL. 496 00:26:51,543 --> 00:26:56,247 AND AGAIN, WE HAVE SOME OF THE LOWEST RATES OF INSURANCE 497 00:26:56,314 --> 00:27:00,185 COVERAGE IN THE LATINO POPULATION. AND THEN ALSO TRAVEL 498 00:27:00,251 --> 00:27:01,486 TO TRIAL CENTERS. 499 00:27:01,553 --> 00:27:06,358 AND THEY'RE NOT, TRIALS AVAILABLE IN MANY OF OUR RURAL 500 00:27:06,424 --> 00:27:11,196 AREAS. SMALLER CITIES AND SO THEREFORE TO PARTICIPATE IN A 501 00:27:11,262 --> 00:27:15,567 TRIAL OFTENTIMES OUR COMMUNITY HAS TO HAVE GOOD TRANSPORTATION 502 00:27:15,633 --> 00:27:19,471 TO BE ABLE TO PARTICIPATE IN A TRIAL. 503 00:27:19,537 --> 00:27:24,976 THE NEXT SLIDE TALKS ABOUT WE KNOW SOME OF THE UNDER 504 00:27:25,043 --> 00:27:29,481 REPRESENTATION OF LATINOS IN CLINICAL TRIALS. WE ARE KNOW 505 00:27:29,547 --> 00:27:34,986 THAT CANCERS ON THE RISE IN OUR LATINO COMMUNITY ARE POPULATION 506 00:27:35,053 --> 00:27:36,488 IS GETTING OLDER. 507 00:27:36,554 --> 00:27:40,725 SOME OF THE CANCERS THAT OUR COMMUNITY FACES ARE OUR CANCERS 508 00:27:40,792 --> 00:27:44,996 THAT ARE NOT WELL STUDIED AND THEY'RE NOT NECESSARILY THE ONES 509 00:27:45,063 --> 00:27:48,466 THAT ARE WE SEE IN IN THE GENERAL POPULATION. 510 00:27:48,533 --> 00:27:49,467 FOR EXAMPLE, WE HAVE HIGHER RATES OF LIVER CANCER, STOMACH, 511 00:27:49,534 --> 00:27:50,468 CANCER, GALLBLADDER, AND CERVICAL CANCER. 512 00:27:50,535 --> 00:27:57,575 AS OPPOSED TO MAYBE BREAST CANCER OR PROSTATE. BUT AT THE 513 00:27:57,642 --> 00:28:04,682 SAME TIME, CANCER HAS BECOME THE LEADING CAUSE OF DEATH FOR 514 00:28:04,749 --> 00:28:10,488 LATINOS AND WE DON'T UNDERSTAND WHY THIS HAS HAPPENED. 515 00:28:10,555 --> 00:28:16,995 THE NEXT SLIDE. SO AGAIN, WHAT WE'RE TRYING TO DO HERE IN SOUTH 516 00:28:17,062 --> 00:28:22,467 TEXAS THROUGH OUR MEDICAL SCHOOL AND OUR CANCER CENTER IS REALLY 517 00:28:22,534 --> 00:28:26,471 TRYING TO HELP OVERCOME THOSE BARRIERS TO PARTICIPATION. 518 00:28:26,538 --> 00:28:29,240 SO WE REALLY PUT A LOT OF EMPHASIS ON BUILDING TRUST 519 00:28:29,307 --> 00:28:31,976 BETWEEN OUR PATIENTS AND THE DOCTOR THAT THEY ARE SEEING AND 520 00:28:32,043 --> 00:28:33,478 WHERE THE TRIAL IS BEING OFFERED. 521 00:28:33,545 --> 00:28:36,114 WE ALSO TRY TO FOSTER THE UNDERSTANDING THAT BY JOINING A 522 00:28:36,181 --> 00:28:38,483 CLINICAL TRIAL, YOU ARE HELPING FUTURE CANCER PATIENTS AS WELL. 523 00:28:38,550 --> 00:28:44,622 NOT ONLY HOPEFULLY BENEFITING YOURSELF, BUT THE FUTURE IN 524 00:28:44,689 --> 00:28:51,429 FUTURE GENERATIONS. WE'RE TRYING TO PRESENT OUR INFORMATION IN A 525 00:28:51,496 --> 00:28:59,604 USABLE AND EASY TO USE FORMAT SO THAT WE CAN INCREASE THE 526 00:28:59,671 --> 00:29:05,743 KNOWLEDGE ABOUT CLINICAL TRIALS AND AGAIN WE RECOGNIZE THAT 527 00:29:05,810 --> 00:29:08,480 INDIVIDUALS ARE NOT ALONE. 528 00:29:08,546 --> 00:29:14,452 THEY HAVE A SUPPORT FAMILY WITH THEM AS WELL. AND SO THAT UNDER 529 00:29:14,519 --> 00:29:18,123 UNDERSTANDING THAT THE FAMILY ALSO CONTRIBUTES TO THE 530 00:29:18,189 --> 00:29:19,491 PATIENT'S DECISION MAKING. 531 00:29:19,557 --> 00:29:23,328 SO WE ARE A VERY ENGAGING OF THE FAMILY. SO ON THE NEXT SLIDE IS 532 00:29:23,394 --> 00:29:26,397 JUST, OH, I'M GONNA SHOW YOU SEVERAL EXAMPLES OF SOME OF THE 533 00:29:26,464 --> 00:29:29,467 WORK THAT WE HAVE DONE HERE IN SAN ANTONIO WITH OUR CANCER 534 00:29:29,534 --> 00:29:30,468 CENTER. 535 00:29:30,535 --> 00:29:35,473 FIRST OF ALL, WE TOOK A DEEP DIVE INTO WHAT WAS GOING ON 536 00:29:35,540 --> 00:29:38,943 WITHIN OUR OWN CANCER CENTER. WHAT DID TRIAL PARTICIPATION 537 00:29:39,010 --> 00:29:40,478 LOOK LIKE FOR US? 538 00:29:40,545 --> 00:29:42,680 WE'RE IN A COMMUNITY REPRESENTING 38 COUNTIES HERE IN 539 00:29:42,747 --> 00:29:45,483 SOUTH TEXAS OF WHICH ARE ALREADY 60% OF OUR POPULATION IS 540 00:29:45,550 --> 00:29:46,484 HISPANIC OR LATINO. 541 00:29:46,551 --> 00:29:52,023 YET THEY WERE UNDERREPRESENTED IN OUR CLINICAL TRIALS. SO WE 542 00:29:52,090 --> 00:29:57,529 WENT AND CONDUCTED FOCUS GROUPS. BOTH WITH PATIENTS AND OUR 543 00:29:57,595 --> 00:30:04,169 PROVIDERS TO FIND OUT WHAT WERE SOME OF THE STUMBLING BLOCKS IN 544 00:30:04,235 --> 00:30:07,472 IN PROVIDING TRIALS TO OUR PARTICIPANTS. 545 00:30:07,539 --> 00:30:11,809 WE ALSO EXPANDED OUR EDUCATIONAL EFFORTS NOT ONLY TO THE 546 00:30:11,876 --> 00:30:16,181 COMMUNITY, BUT ALSO WORKING WITH OUR PROVIDERS, WERE THEY DOING 547 00:30:16,247 --> 00:30:20,952 THEIR BEST AND TRYING TO MAKE SURE THAT THE INCLUSION CRITERIA 548 00:30:21,019 --> 00:30:25,757 FOR SOME OF THE TRIALS WERE WERE APPLICABLE TO THE POPULATION 549 00:30:25,823 --> 00:30:27,492 THAT THEY WERE SERVING. 550 00:30:27,559 --> 00:30:29,060 AND SO THEREFORE AS A GROUP INTERNAL GROUP WE CAME UP WITH 551 00:30:29,127 --> 00:30:30,461 SOMETHING THAT WAS CALLED THE MINORITY OF CRUEL PLAN FOR ALL 552 00:30:30,528 --> 00:30:31,462 CLINICAL TRIALS. 553 00:30:31,529 --> 00:30:36,434 SO NOW AN INVESTIGATOR THAT OPENS THE TRIAL AT OUR OUR 554 00:30:36,501 --> 00:30:42,340 CANCER CENTER THEY HAVE TO SHOW THE YOU KNOW A REPORT AND SHARE 555 00:30:42,407 --> 00:30:48,680 SHARE WITH US WHAT THEY PLAN TO DO TO MAKE SURE THAT THEY ARE 556 00:30:48,746 --> 00:30:54,118 GOING TO TRY TO INCLUDE AS MANY OF PARTICIPANTS AS POSSIBLE FROM 557 00:30:54,185 --> 00:30:55,486 OUR SERVICE AREA. 558 00:30:55,553 --> 00:30:59,958 SO WE WORKED WITH THEM. WE CAME UP WITH A CHECKLIST. WE HAVE A 559 00:31:00,024 --> 00:31:02,860 PROGRAM COORDINATOR THAT IS AVAILABLE TO HELP THEM TRANSLATE 560 00:31:02,927 --> 00:31:06,731 SOME OF THEIR INFORMED CONSENT FORMS TO TALK ABOUT DO WE NEED 561 00:31:06,798 --> 00:31:10,602 TO PROVIDE THE CONSENT FORMS NOT ONLY IN A WRITTEN FORMAT PERHAPS 562 00:31:10,668 --> 00:31:14,472 IN A VIDEO FORMAT, DIFFERENT TYPES OF WAYS TO ENSURE THAT WE 563 00:31:14,539 --> 00:31:15,473 ARE TRULY ENCOURAGING 564 00:31:15,540 --> 00:31:19,811 THE PARTICIPATION OF THE PARTICIPANT. AND WE EVEN KNOW 565 00:31:19,877 --> 00:31:26,150 WHEN WE TRIED THIS WE HAVE SEEN A MODEST INCREASE FROM 42% TO 566 00:31:26,217 --> 00:31:29,487 49% OF PARTICIPANTS PARTICIPATING IN OUR CLINICAL 567 00:31:29,554 --> 00:31:30,488 TRIALS. 568 00:31:30,555 --> 00:31:34,492 WE SAID WE'VE GOT TO DO MORE. SO ON THE NEXT SLIDE, I'LL SHOW 569 00:31:34,559 --> 00:31:35,493 YOU. 570 00:31:35,560 --> 00:31:36,995 A PROJECT THAT WE DEVELOPED THAT'S CALLED THE CHOICES 571 00:31:37,061 --> 00:31:38,463 INTERVENTION. THIS PROJECT IS SUPPORTED BY THE SUSAN G. 572 00:31:38,529 --> 00:31:45,136 COLEMAN FOUNDATION AND WAS REALLY FOCUSED ON EMPOWERING 573 00:31:45,203 --> 00:31:51,809 LATINAS TO MAKE INFORMED DECISIONS ABOUT BREAST CANCER 574 00:31:51,876 --> 00:31:53,478 CLINICAL TRIALS. 575 00:31:53,544 --> 00:31:57,181 AND SOME OF THE THINGS THAT WERE IMPORTANT AND WHAT WE DID HERE 576 00:31:57,248 --> 00:31:59,784 IS THAT WE WERE FOCUSING ON ENHANCING KNOWLEDGE, ATTITUDES 577 00:31:59,851 --> 00:32:01,486 AND SKILLS FOR THIS PARTICULAR POPULATION. 578 00:32:01,552 --> 00:32:07,325 BUT WE ALSO WANTED TO INCREASE THE PATIENT SELF-EFFICACY. WHAT 579 00:32:07,392 --> 00:32:13,131 DO WE MEAN BY THAT? THAT BY SEEING INDIVIDUALS LIKE 580 00:32:13,197 --> 00:32:15,466 THEMSELVES MAKING POSITIVE DECISIONS. 581 00:32:15,533 --> 00:32:19,203 HOW ABOUT WHETHER THEY SHOULD PARTICIPATE IN A TRIAL OR NOT 582 00:32:19,270 --> 00:32:23,308 MADE A DIFFERENCE FOR OUR OUR PATIENTS AND WE ALSO WANTED TO 583 00:32:23,374 --> 00:32:27,078 ENCOURAGE THEM TO FEEL FREE TO DISCUSS CLINICAL TRIALS AS A 584 00:32:27,145 --> 00:32:30,481 TREATMENT OPTIONS NOT ONLY WITH THEIR DOCTOR BUT WITH THEIR 585 00:32:30,548 --> 00:32:31,482 FAMILIES. 586 00:32:31,549 --> 00:32:34,118 SO WE HAD BOTH PRINTED MATERIALS, WE HAD SOME VIDEO 587 00:32:34,185 --> 00:32:36,487 MATERIALS AND WE WORKED VERY CLOSELY WITH THE CLINICIANS. 588 00:32:36,554 --> 00:32:39,223 THE INDIVIDUALS THAT WERE ELIGIBLE FOR THIS STUDY INCLUDED 589 00:32:39,290 --> 00:32:42,293 IN INDIVIDUALS WHO HAD BEEN DIAGNOSED WITH BREAST CANCER BUT 590 00:32:42,360 --> 00:32:45,630 HAD NOT YET CONSULTED WITH THEIR DOCTOR TO FIND OUT WHAT 591 00:32:45,697 --> 00:32:47,465 TREATMENT OPTIONS THEY WOULD BE OFFERED. 592 00:32:47,532 --> 00:32:53,171 SO WE TRIED TO TO CONTACT THE PATIENT BEFORE THEY MET WITH THE 593 00:32:53,237 --> 00:32:57,975 DOCTOR AND THAT THEY ALSO HAD NOT YET PARTICIPATED IN A 594 00:32:58,042 --> 00:33:02,780 CLINICAL TRIAL, BUT THAT THEY WOULD BE ELIGIBLE BASED ON THE 595 00:33:02,847 --> 00:33:08,920 MEDICAL RECORDS FOR A PHASE 3 OR A PHASE 4 TRIAL AND MAYBE LATER 596 00:33:08,986 --> 00:33:13,758 ON WE CAN TALK ABOUT THE DIFFERENT PHASES OF TRIALS, TO 597 00:33:13,825 --> 00:33:15,493 GET MORE, HELP OUR 598 00:33:15,560 --> 00:33:18,896 COMMUNITY, THAT'S LISTENING TODAY, A BETTER UNDERSTANDING OF 599 00:33:18,963 --> 00:33:21,466 THE DIFFERENT PHASES OF CLINICAL TRIALS. 600 00:33:21,532 --> 00:33:24,569 BUT IN OUR CASE, WE WANTED TO MAKE SURE THAT THE 12 WOMEN 601 00:33:24,635 --> 00:33:26,471 WOULD BE ELIGIBLE FOR THE MOST OPEN TRIALS. 602 00:33:26,537 --> 00:33:32,710 THAT WE WILL PROVIDE, FOR THEM. SO ON THE NEXT SLIDE, WHAT WE 603 00:33:32,777 --> 00:33:37,482 SHOW HERE IS THAT WE, HAD SOME VERY POSITIVE RESULTS. 604 00:33:37,548 --> 00:33:40,084 CHOICES WAS MORE EFFECTIVE IN IMPROVING PERCEIVED 605 00:33:40,151 --> 00:33:42,687 UNDERSTANDING OF CLINICAL TRIALS. AND THE INCREASED 606 00:33:42,754 --> 00:33:46,424 CONSIDERATION OF PARTICIPATING IN CLINICAL TRIALS AS A AS A 607 00:33:46,491 --> 00:33:49,460 TREATMENT OPTION AND ALSO WITHIN OUR INTERVENTION GROUP, 608 00:33:49,527 --> 00:33:52,463 PARTICIPANTS SHOWED GREATER SIGNIFICANT CHANGES IN STAGES OF 609 00:33:52,530 --> 00:33:53,464 CHANGE. 610 00:33:53,531 --> 00:33:58,236 FOR EXAMPLE, IF THEY KNEW NOTHING ABOUT A TRIAL, THEIR 611 00:33:58,302 --> 00:34:02,507 INFORMATION IN IMPROVED AND THEIR KNOWLEDGE ABOUT IT IN 612 00:34:02,573 --> 00:34:08,679 TERMS OF GOING TO THE NEXT STEP AND BEING WILLING TO LISTEN TO 613 00:34:08,746 --> 00:34:12,483 IF THEY WOULD CONSIDER GOING INTO A TRIAL. 614 00:34:12,550 --> 00:34:17,722 AND THEY WERE ALSO MORE LIKELY TO TALK TO THEIR DOCTORS ABOUT 615 00:34:17,789 --> 00:34:22,093 CLINICAL TRIALS TO TALK WITH FAMILY AND FRIENDS AND TO 616 00:34:22,160 --> 00:34:26,464 CONSIDER THE PROS AND CONS OF PARTICIPATING IN A CLINICAL 617 00:34:26,531 --> 00:34:27,465 TRIAL. 618 00:34:27,532 --> 00:34:32,370 SO SOME OF THE SPECIFIC LESSONS LEARNED WAS THAT JUST RAISING 619 00:34:32,437 --> 00:34:36,374 AWARENESS DOES NOT BOOST PARTICIPATION ALONE. AND WE HAVE 620 00:34:36,441 --> 00:34:39,477 TO ADDRESS SOME OF THE OTHER BARRIERS. 621 00:34:39,544 --> 00:34:42,280 AND SO THEREFORE BARRIERS TO PARTICIPATION ARE COMPLEX AND 622 00:34:42,346 --> 00:34:45,082 THEY'RE MULTI-FACETED. SO WE HAVE TO DESIGN PROGRAMS THAT 623 00:34:45,149 --> 00:34:48,519 MAKE SURE THAT WE HAVE A HEALTHCARE SYSTEM THAT HAS THE 624 00:34:48,586 --> 00:34:51,622 INFORMATION THAT THEY NEED TO SHARE WITH THEIR PATIENTS AS 625 00:34:51,689 --> 00:34:53,491 WELL AS WORKING WITH THE PROVIDERS. 626 00:34:53,558 --> 00:34:59,130 AND THE PATIENTS. IT HAS TO BE A COMPREHENSIVE PROGRAM. ANOTHER 627 00:34:59,197 --> 00:35:04,735 PART THAT WE FELT WAS REALLY IMPORTANT IS THAT WE INTRODUCED 628 00:35:04,802 --> 00:35:08,840 PATIENT NAVIGATORS THAT COULD ANSWER QUESTIONS THAT PERHAPS 629 00:35:08,906 --> 00:35:14,479 THE PATIENT FELT MORE AT EASE AND ASKING THEM VERSUS THE 630 00:35:14,545 --> 00:35:15,480 DOCTOR. 631 00:35:15,546 --> 00:35:19,917 SOMETIMES PATIENTS FEEL I DON'T WANT TO TAKE UP THE DOCTOR'S 632 00:35:19,984 --> 00:35:23,921 TIMES OR SOMETIMES OUR DOCTORS ARE PHYSICIANS ARE PRESSED FOR 633 00:35:23,988 --> 00:35:27,992 TIME AND SO THEREFORE HAVING A PATIENT NAVIGATOR WHO LOOKED 634 00:35:28,059 --> 00:35:32,463 LIKE THAT PATIENT COULD WOULD BE THERE AVAILABLE TO ANSWER MORE 635 00:35:32,530 --> 00:35:33,464 SPECIFIC QUESTIONS. 636 00:35:33,531 --> 00:35:35,099 AND SO THEY COULD THEN FOLLOW UP TO FOCUS ON, YOU KNOW, 637 00:35:35,166 --> 00:35:36,467 EXPLAINING A LITTLE BIT FURTHER WHAT OPTIONS THE PROVIDER HAD 638 00:35:36,534 --> 00:35:37,468 GIVEN TO THE PATIENT. 639 00:35:37,535 --> 00:35:44,108 AND THEN WE ALSO DESIGNED SOME COMPUTER-BASED VIDEOS THAT WERE 640 00:35:44,175 --> 00:35:50,781 EFFECTIVE. SO THAT WAS OUR CHOICES PROJECT AND NOW WE'RE 641 00:35:50,848 --> 00:35:58,089 EVEN EXPANDING THAT TO ENCOURAGE PATIENTS AS THEY COME INTO OUR 642 00:35:58,155 --> 00:36:05,463 CLINICS TO BE EXPOSED TO A WIDE VARIETY OF INFORMATION ABOUT 643 00:36:05,530 --> 00:36:07,532 CLINICAL TRIALS. 644 00:36:37,528 --> 00:36:45,403 THE NEXT SLIDE IS A PROGRAM SOME OF YOU MIGHT BE FOLLOWING US 645 00:36:45,469 --> 00:36:51,475 NOW. WE HAVE A LARGE, ADVOCACY NETWORK CALLED SALUDA MEDICA 646 00:36:51,542 --> 00:36:52,476 PROGRAM. 647 00:36:52,543 --> 00:36:55,546 ORIGINALLY WE STARTED AS A CHILDHOOD OBESITY PREVENTION 648 00:36:55,613 --> 00:37:00,117 PROGRAM AND WE HAVE JUST NOW EXPANDED IT TO REALLY LOOK AT 649 00:37:00,184 --> 00:37:04,355 SOME OF THE SOCIAL DETERMINANTS OF HEALTH THAT ARE IMPACTING OUR 650 00:37:04,422 --> 00:37:08,926 LATINO COMMUNITY AND IT'S IT'S IT'S A WIDE ARRAY OF NETWORK AND 651 00:37:08,993 --> 00:37:10,461 INFORMATION THAT WE PROVIDE. 652 00:37:10,528 --> 00:37:14,198 WE PROVIDE INFOGRAPHICS. WE PROVIDE SHORT VIDEOS ON 653 00:37:14,265 --> 00:37:19,470 DIFFERENT TOPICS ON ISSUES THAT ARE OF IMPORTANCE TO THE LATINO 654 00:37:19,537 --> 00:37:20,471 COMMUNITY. 655 00:37:20,538 --> 00:37:26,177 BUT WE WERE ABLE TO WORK. TO RECEIVE A GRANT FROM JANETEK TO 656 00:37:26,243 --> 00:37:30,481 CREATE A PROGRAM THAT REALLY TAUGHT AND FOCUSED ON CLINICAL 657 00:37:30,548 --> 00:37:31,482 TRIALS. 658 00:37:31,549 --> 00:37:37,121 SO WITH THIS NEW FUNDING FROM GENENTE THAT ACTUALLY CAME FROM 659 00:37:37,188 --> 00:37:41,726 THERE. INTEREST IN PROMOTING HEALTH EQUITY AND DIVERSITY NOT 660 00:37:41,792 --> 00:37:46,297 ONLY IN THE STEM FIELDS WHICH ARE SCIENCE, TECHNOLOGY, 661 00:37:46,364 --> 00:37:50,901 ENGINEERING AND MEDICINE, BUT ALSO TO EXPAND THE INCLUSIVENESS 662 00:37:50,968 --> 00:37:53,471 OF CLINICAL TRIALS AND RECRUITMENT. 663 00:37:53,537 --> 00:37:57,341 SO WITH GENENTECH SUPPORT WE ARE DEVELOPING CULTURALLY RELEVANT 664 00:37:57,408 --> 00:38:01,245 DIGITAL HEALTH COMMUNICATIONS. AND NOW WE'VE REACHED OUT TO 665 00:38:01,312 --> 00:38:03,848 DIFFERENT ADVOCACY NETWORK INDIVIDUALS AND CLINICAL 666 00:38:03,914 --> 00:38:07,718 PARTNERS TO PROMOTE HEALTH EQUITY AND TO ALSO ADVANCE 667 00:38:07,785 --> 00:38:12,023 CLINICAL TRIALS FOR NOT ONLY THE TREATMENT OF CANCER, BUT 668 00:38:12,089 --> 00:38:15,493 ALZHEIMER'S AS WE'RE FINDING THAT ALZHEIMER'S IS ALSO 669 00:38:15,559 --> 00:38:21,298 IMPACTING OUR LATINO COMMUNITIES AS WELL. AND LATINOS ARE ONE OF 670 00:38:21,365 --> 00:38:24,468 THE LARGEST USERS OF SOCIAL MEDIA. 671 00:38:24,535 --> 00:38:27,471 AND SO WE HAVE, YOU KNOW, RECEIVED A LOT OF SUCCESS IN 672 00:38:27,538 --> 00:38:29,740 USING ON WEB-BASED, ON FACEBOOK, USING, WEBINARS AND DIFFERENT 673 00:38:29,807 --> 00:38:31,475 TYPES OF FORMAT FOR REACHING OUR AUDIENCE. 674 00:38:31,542 --> 00:38:37,648 AND RIGHT NOW OUR NETWORK IS GREATER THAN 500,000. 675 00:38:37,715 --> 00:38:45,890 INDIVIDUALS. SO THEN THE NEXT SLIDE IS THAT WE, DESIGNED A 4 676 00:38:45,956 --> 00:38:53,464 PART TYPE, SAN DIEGO PROGRAM TO HELP US ADDRESS CLINICAL TRIALS. 677 00:38:53,531 --> 00:38:57,068 THE FIRST AGAIN WAS TO PROMOTE BILINGUAL BY CULTURAL 678 00:38:57,134 --> 00:39:01,072 INFORMATION ON CLINICAL TRIALS. AND SO WE IDENTIFY LATINOS WHO 679 00:39:01,138 --> 00:39:03,474 HAVE PARTICIPATED IN A CLINICAL TRIAL. 680 00:39:03,541 --> 00:39:05,042 WE INTERVIEW THEM AND ASK THEM WHY THEY FEEL THIS IS IMPORTANT, 681 00:39:05,109 --> 00:39:06,477 WHAT KIND OF A DIFFERENCE HAS IT MADE IN THEIR LIFE. 682 00:39:06,544 --> 00:39:11,415 AND WE ALSO TALKED TO OUR PHYSICIANS, OUR LATINO 683 00:39:11,482 --> 00:39:16,353 PHYSICIANS AND GET SOME INFORMATION FROM THEM IN TERMS 684 00:39:16,420 --> 00:39:23,494 OF WHAT DO THEY SEE AND HOW DO THEY FEEL ABOUT CLINICAL TRIALS. 685 00:39:23,561 --> 00:39:27,431 SO WE DEVELOP INFOGRAPHICS AND WEBINARS. SO WE PROMOTE 686 00:39:27,498 --> 00:39:30,935 INFORMATION ON CLINICAL TRIALS, THE NEED FOR BIOSPECIMEN 687 00:39:31,001 --> 00:39:34,405 DONATION AND TO INCREASE THE UNDERSTANDING AND AWARENESS 688 00:39:34,472 --> 00:39:37,475 ABOUT CLINICAL TRIALS AS AS AN OPTION. 689 00:39:37,541 --> 00:39:43,247 AND SO HERE ARE SOME OF THE EXAMPLES OF THE THINGS THAT 690 00:39:43,314 --> 00:39:48,519 WE'VE DONE THROUGH THE SECOND COMPONENT ON THE NEXT SLIDE IS 691 00:39:48,586 --> 00:39:53,824 THAT WE, ALSO PROMOTE OPEN TRIALS THAT ARE AVAILABLE IN OUR 692 00:39:53,891 --> 00:39:59,096 COMMUNITY OR WE PROMOTE, EXCUSE ME, THE NIH WEBSITES THAT, ALSO 693 00:39:59,163 --> 00:40:02,466 SHARE WITH YOU TRIALS THAT ARE AVAILABLE. 694 00:40:02,533 --> 00:40:05,202 AND SO HERE ARE SOME OF THE TRIALS THAT WE CURRENTLY HAVE 695 00:40:05,269 --> 00:40:07,938 HERE IN THE SAN ANTONIO AREA. ONE WITH IT WAS ON PROSTATE 696 00:40:08,005 --> 00:40:10,441 CANCER, THE TRIALS THAT WE CURRENTLY HAVE HERE IN THE SAN 697 00:40:10,508 --> 00:40:12,977 ANTONIO AREA, ONE WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE 698 00:40:13,043 --> 00:40:15,479 WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE IN WHICH WE'RE 699 00:40:15,546 --> 00:40:19,016 RECRUITING ONE WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE IN 700 00:40:19,083 --> 00:40:21,886 WHICH WE'RE RECRUITING 1,500 LATINO CANCER SURVIVORS TO HEAR 701 00:40:21,952 --> 00:40:25,089 THEIR STORIES AND TO TELL US ABOUT THE DIFFERENT, LATINO 702 00:40:25,156 --> 00:40:28,926 CANCER SURVIVORS TO HEAR THEIR STORIES AND TO TELL US ABOUT THE 703 00:40:28,993 --> 00:40:32,463 DIFFERENT, ISSUES THAT THEY HAVE ENCOUNTERED IN ON THE NEXT SLIDE 704 00:40:32,530 --> 00:40:36,801 IS THAT THE THIRD ELEMENT OF OUR SALUTE IMERICA MODEL IS THAT WE 705 00:40:36,867 --> 00:40:40,471 AS I MENTIONED EARLIER, WE USE REAL ROLE MODELS FROM THE 706 00:40:40,538 --> 00:40:42,473 COMMUNITY TO TELL US THEIR STORY. 707 00:40:42,540 --> 00:40:45,843 YOU KNOW, WHAT WAS IT THAT THEY COULD, YOU KNOW, MOTIVATED THEM 708 00:40:45,910 --> 00:40:49,246 TO PARTICIPATE IN THE TRIAL. WHAT WAS IT THAT THEY COULD, YOU 709 00:40:49,313 --> 00:40:51,482 KNOW, MOTIVATED THEM TO PARTICIPATE IN THE TRIAL. 710 00:40:51,549 --> 00:40:55,286 WHAT WAS THEIR DECISION MAKING PROCESS? AND WE MAKE THESE 711 00:40:55,352 --> 00:40:59,490 VIDEOS BOTH OF AVAILABLE IN, IN ENGLISH, IN SPANISH AS WELL. 712 00:40:59,557 --> 00:41:04,795 AND THEN ON THE NEXT SLIDE, THE FOURTH STEP IS THAT IT'S NOT ALL 713 00:41:04,862 --> 00:41:08,199 ABOUT SHOULDERING JUST ON OUR PATIENTS, BUT IT'S ALSO 714 00:41:08,265 --> 00:41:10,467 INCREASING THE KNOWLEDGE OF OUR PROVIDERS. 715 00:41:10,534 --> 00:41:12,703 WE WANT TO MAKE SURE THAT OUR PROVIDERS DON'T MAKE DECISIONS 716 00:41:12,770 --> 00:41:15,372 FOR US FOR IN TERMS OF SAYING, WELL, I'M NOT GOING TO OFFER 717 00:41:15,439 --> 00:41:17,007 THIS TRIAL TO THIS INDIVIDUAL BECAUSE THEY'RE LACKING 718 00:41:17,074 --> 00:41:19,243 INSURANCE OR THEY MAY HAVE TROUBLE TO GETTING HERE OR WE 719 00:41:19,310 --> 00:41:21,478 MAY THEY MAY NOT COME IN AS OFTEN AS WE THINK. 720 00:41:21,545 --> 00:41:25,015 SO WE HAVE DEVELOPED AN EDUCATIONAL PROGRAM TO ENSURE 721 00:41:25,082 --> 00:41:29,353 THAT OUR OWN PROVIDERS DON'T CARRY BIASES THAT MIGHT BE, YOU 722 00:41:29,420 --> 00:41:32,923 KNOW, OMITTING PEOPLE WHO ARE TRULY ELIGIBLE FOR PARTICIPATING 723 00:41:32,990 --> 00:41:34,491 IN A CLINICAL TRIAL. 724 00:41:34,558 --> 00:41:43,334 SO THIS IS AGAIN, IT'S ON OUR WEBSITE, YOU'RE FREE TO DOWNLOAD 725 00:41:43,400 --> 00:41:48,472 IT FOR PARTICIPATING IN A CLINICAL TRIAL. 726 00:41:48,539 --> 00:41:51,642 SO THIS IS AGAIN IT'S ON OUR WEBSITE YOU'RE FREE TO DOWNLOAD 727 00:41:51,709 --> 00:41:53,477 IT AND AND SHARE IT WITH OTHER. 728 00:41:53,544 --> 00:41:55,679 SO THIS IS AGAIN IT'S ON OUR WEBSITE YOU'RE FREE TO DOWNLOAD 729 00:41:55,746 --> 00:41:57,882 IT AND AND SHARE IT WITH OTHER INDIVIDUALS AND IT JUST REALLY 730 00:41:57,948 --> 00:42:00,451 TELLS YOU ARE YOU CARRYING A BIAS AND IF SO WHAT YOU CAN DO 731 00:42:00,517 --> 00:42:02,286 TO GO ABOUT CHANGING YOUR ACTIONS AND BECOMING MORE OPEN 732 00:42:02,353 --> 00:42:04,488 TO INC AND THEN, THE NEXT SLIDE, I JUST WANTED TO BRIEFLY 733 00:42:04,555 --> 00:42:07,758 SUMMARIZE. THOSE ARE JUST SOME OF THE EXAMPLES OF SOME OF THE 734 00:42:07,825 --> 00:42:10,494 THINGS THAT WE'RE DOING IN THE AREAS OF CLINICAL TRIALS. 735 00:42:10,561 --> 00:42:15,532 BUT I HAD TO SUMMARIZE SOME OF OUR BEST PRACTICES AND 736 00:42:15,599 --> 00:42:20,104 RECOMMENDATIONS. BUT I WANTED TO SUMMARIZE SOME OF OUR BEST 737 00:42:20,170 --> 00:42:21,472 PRACTICES AND RECOMMENDATIONS. 738 00:42:21,538 --> 00:42:24,642 IF YOU'RE GOING TO USE EDUCATIONAL VIDEOS, MAKE SURE 739 00:42:24,708 --> 00:42:27,478 THAT THEY ARE CULTURALLY TAILORED TO YOUR COMMUNITY. 740 00:42:27,544 --> 00:42:34,051 IF YOU'RE GOING TO USE EDUCATIONAL VIDEOS, MAKE SURE 741 00:42:34,118 --> 00:42:40,658 THAT THEY ARE CULTURALLY TAILORED TO, TO YOUR COMMUNITY 742 00:42:40,724 --> 00:42:50,167 THAT YOU, THAT IT HAS A STRONG NARRATIVE OF, YOU KNOW, WHY IT 743 00:42:50,234 --> 00:42:57,474 WAS IMPORTANT FOR THEM TO PARTICIPATE IN A CLINICAL TRIAL. 744 00:42:57,541 --> 00:43:03,714 ALSO TRY USING PATIENT NAVIGATORS. OR THERE'S SO MUCH 745 00:43:03,781 --> 00:43:09,253 INFORMATION. IF YOU KNOW, PARTICULAR, IF YOU'RE DIAGNOSED 746 00:43:09,320 --> 00:43:16,994 WITH CANCER OR LIFE THREATENING DISEASE, YOU KNOW, IT'S HARD TO 747 00:43:17,061 --> 00:43:25,469 ABSORB ALL THE INFORMATION THAT YOU HAVE TO KNOW ABOUT WHAT TO 748 00:43:25,536 --> 00:43:27,538 DO. 749 00:43:43,554 --> 00:43:52,496 SO, OUR DOWNSTREAM PATIENTS ARE SOMEWHAT PROTECTED OF WHAT WE 750 00:43:52,563 --> 00:44:02,439 CALL THE SOLID TUMORS. LIKE THEY HAVE, LESS LIKELY TO BE 751 00:44:02,506 --> 00:44:11,482 DIAGNOSED WITH BREAST RACIAL AND ETHNIC GROUPS WITHIN THE DOWN 752 00:44:11,548 --> 00:44:13,550 SYNDROME COMMUNITY. 753 00:44:58,529 --> 00:45:01,198 AND MY LAST SLIDE IS JUST TO SAY THANK YOU VERY MUCH FOR INVITING 754 00:45:01,265 --> 00:45:03,934 ME TODAY. I HOPE THE FEW TIPS THAT I'VE BEEN ABLE TO SHARE OUR 755 00:45:04,001 --> 00:45:06,303 INFORMATIVE AND HERE'S SOME QR CODES THAT YOU CAN USE TO LEARN 756 00:45:06,370 --> 00:45:07,471 MORE ABOUT OUR CONFERENCE COMING UP. 757 00:45:07,538 --> 00:45:14,411 AS WELL AS IF YOU WANT TO SHARE THE IMPLICIT BIAS INFORMATION 758 00:45:14,478 --> 00:45:20,184 WITH ANYBODY IN YOUR COMMUNITY. AGAIN, ME, GRACIAS, AND THANK 759 00:45:20,250 --> 00:45:22,486 YOU FOR HAVING ME. 760 00:45:22,553 --> 00:45:27,157 THANK YOU SO MUCH, DR. RAMIREZ. EXCELLENT PRESENTATION. WE WILL 761 00:45:27,224 --> 00:45:29,493 TAKE QUESTIONS AT THE END. 762 00:45:29,560 --> 00:45:33,797 AND NOW AGAIN, TO REINTRODUCE OUR COMMUNITY REPRESENTATIVE. 763 00:45:33,864 --> 00:45:36,467 OUR PARENT, DR. LISA TROER. 764 00:45:36,533 --> 00:45:40,871 WHO IS A PROFESSOR AND CHAIR OF THE DEPARTMENT OF COMMUNICATION 765 00:45:40,938 --> 00:45:44,475 ON THEATER ARTS AT CINCINNATI STATE TECHNICAL AND COMMUNITY 766 00:45:44,541 --> 00:45:45,476 COLLEGE. 767 00:45:45,542 --> 00:45:49,913 AT THE DOWN SYNDROME ASSOCIATION OF GREATER CINCINNATI, SHE ALSO 768 00:45:49,980 --> 00:45:53,484 SERVES AS A LEADER OF THE AFRICAN AMERICAN. 769 00:45:53,550 --> 00:45:57,754 FAMILY NETWORK AND SITS ON THE DIVERSITY EQUITY AND INCLUSION 770 00:45:57,821 --> 00:46:02,493 COMMITTEE. NIETZSCHE IS ONE TO 3, INCLUDING JAYA, WHO HAS DOWN 771 00:46:02,559 --> 00:46:03,494 SYNDROME. 772 00:46:03,560 --> 00:46:08,966 AND LASTLY, A VERY IMPORTANT SPEAKER, MISS JAY AFROER, WHO IS 773 00:46:09,032 --> 00:46:13,470 A RISING SEVENTH GRADER AND SWIMS WITH SPECIAL OLYMPICS. 774 00:46:13,537 --> 00:46:18,041 OR WHERE SHE WON FIRST PLACE IN BACKSTROKE. IN SCHOOL HER 775 00:46:18,108 --> 00:46:22,579 FAVORITE SUBJECT IS MATT. AND TODAY SHE WILL HELP US LEARN 776 00:46:22,646 --> 00:46:25,482 ABOUT HER EXPERIENCES AS A RESEARCH PARTICIPANT. 777 00:46:25,549 --> 00:46:30,487 SO, AMANDA, PLEASE PUT UP THE SLIDES FOR DR. THOR AND JAYA. 778 00:46:30,554 --> 00:46:34,491 YOU READY? 779 00:46:34,558 --> 00:46:39,963 NOW GET READY TO BE CAPTIVATED BY THE TRUE ROCK STAR OF OUR 780 00:46:40,030 --> 00:46:42,466 WEBINAR. HOW ARE YOU TODAY, JAYA? 781 00:46:42,533 --> 00:46:43,467 GREAT. 782 00:46:43,534 --> 00:46:48,605 WONDERFUL. JAYA, CAN YOU TELL US A LITTLE BIT ABOUT YOURSELF? AND 783 00:46:48,672 --> 00:46:52,476 YOUR EXPERIENCE IN TAKING PART IN DOWN SYNDROME RESEARCH. 784 00:46:52,543 --> 00:47:03,487 YES, MY NAME IS JAYA. DO WELL. BE 12 ON FRIDAY. 785 00:47:03,554 --> 00:47:06,490 WOW! 786 00:47:06,557 --> 00:47:14,464 YOU'RE GOING, OKAY. WILL BE. 7, GO AHEAD. 787 00:47:14,531 --> 00:47:20,470 PERSON, CAMERITY, BAYER. 788 00:47:20,537 --> 00:47:36,486 ALRIGHT. SWIM TEAM CALLED THE CHAN VIEW SHARKS AT SAM WITH 789 00:47:36,553 --> 00:47:44,461 I LIKE TO GO TO RIGHT. 790 00:47:44,528 --> 00:47:49,466 I LIKE TO DANCE. 791 00:47:49,533 --> 00:47:57,474 OKAY, I WILL JUST STUDY 2 USERS THOUGH. 792 00:47:57,541 --> 00:48:07,484 SOMETIMES. IT WHAT? ALRIGHT. I WISH MY FIRST. 793 00:48:07,551 --> 00:48:11,488 WE'RE THERE. 794 00:48:11,555 --> 00:48:15,626 WELL, THAT'S WONDERFUL. THANK YOU FOR SHARING THAT WITH US AND 795 00:48:15,692 --> 00:48:17,494 HAPPY EARLY BIRTHDAY TO YOU. 796 00:48:17,561 --> 00:48:23,467 THANK YOU. 797 00:48:23,533 --> 00:48:24,468 YEAH. 798 00:48:24,534 --> 00:48:25,969 AND THANK YOU FOR PARTICIPATING IN RESEARCH. SO SOMETIMES IT'S A 799 00:48:26,036 --> 00:48:27,471 LITTLE BORING. PEOPLE AROUND AND YOU JUST WISH YOUR FRIENDS WERE 800 00:48:27,537 --> 00:48:28,472 THERE WITH YOU, RIGHT? 801 00:48:28,538 --> 00:48:29,473 YEP. 802 00:48:29,539 --> 00:48:31,475 WELL, YOU CAN INVITE THEM. PERHAPS IN THE FUTURE. YEAH. 803 00:48:31,541 --> 00:48:32,476 WELL, HAPPY BIRTHDAY. 804 00:48:32,542 --> 00:48:49,493 THANK YOU, AND I DON'T HAVE. HI DIGI. 805 00:48:49,559 --> 00:48:50,494 YEAH. 806 00:48:50,560 --> 00:48:51,495 YEAH, EVERYBODY'S SAYING HAPPY BIRTHDAY TO YOU. YEAH, DO YOU 807 00:48:51,561 --> 00:48:52,462 SEE THAT? YEAH. OKAY, WELL THANK YOU FOR SHARING THAT. 808 00:48:52,529 --> 00:48:56,466 LET'S GO. CAN WE PLEASE SEE THE NEXT SLIDE? 809 00:48:56,533 --> 00:49:04,708 YEAH, WHAT KIND OF SUPPORT OR ACCOMMODATIONS DO YOU THINK WILL 810 00:49:04,775 --> 00:49:11,481 BE HELPFUL? FOR YOU TO PARTICIPATE IN DOWN SYNDROME 811 00:49:11,548 --> 00:49:12,482 RESEARCH. 812 00:49:12,549 --> 00:49:25,462 BREAKS IF IT'S 2, MANY, ALRIGHT. 2. 813 00:49:25,529 --> 00:49:31,968 OKAY. THAT'S A GOOD IDEA. SO PLAYING GAMES WILL MAKE IT A LOT 814 00:49:32,035 --> 00:49:33,470 MORE FUN, RIGHT? 815 00:49:33,537 --> 00:49:37,474 LISHA, WOULD YOU LIKE TO ADD SOMETHING TO THAT? 816 00:49:37,541 --> 00:49:43,080 I THINK THAT WAS A GOOD POINT. DEFINITELY BREAKS ARE NEEDED IF 817 00:49:43,146 --> 00:49:48,218 THERE'S A LOT OF QUESTIONS. I THINK TIME EVEN I UNDERSTAND 818 00:49:48,285 --> 00:49:51,488 THAT RESEARCHERS, ALSO WANT TO GET HOME. 819 00:49:51,555 --> 00:49:52,489 THEY HAVE A LIFE OUTSIDE OF WORK, BUT IT'S REALLY HARD TO DO 820 00:49:52,556 --> 00:49:53,490 RESEARCH IN THE MIDDLE OF THE SCHOOL DAY. 821 00:49:53,557 --> 00:49:57,828 SHE GETS OUT OF SCHOOL AT 30'CLOCK. SO IF SHE HAS AN 822 00:49:57,894 --> 00:50:02,499 APPOINTMENT AT 3, I MAY NEED TO PICK HER UP EARLY FROM SCHOOL 823 00:50:02,566 --> 00:50:06,470 AND THAT BE GET THAT BECOMES A BIT OF AN INCONVENIENCE. 824 00:50:06,536 --> 00:50:07,471 ABSOLUTELY. 825 00:50:07,537 --> 00:50:11,475 ALSO I THINK CHILDCARE WHEN AVAILABLE, ESPECIALLY WHEN 826 00:50:11,541 --> 00:50:17,481 PEOPLE HAVE OTHER CHILDREN OR IF PARENTS ARE EXPECTED TO FILL OUT 827 00:50:17,547 --> 00:50:21,985 SURVEYS WHILE THEIR CHILD IS PARTICIPATING IN RESEARCH, THEN 828 00:50:22,052 --> 00:50:25,489 HAVING AVAILABLE CHILDCARE WOULD BE REALLY BENEFICIAL. 829 00:50:25,555 --> 00:50:26,490 OKAY. 830 00:50:26,556 --> 00:50:28,492 THAT IS TRUE. THANK YOU FOR SHARING THAT. AND NEXT SLIDE, 831 00:50:28,558 --> 00:50:29,493 PLEASE. 832 00:50:29,559 --> 00:50:31,461 OKAY. 833 00:50:31,528 --> 00:50:35,899 YEAH, ARE THERE SPECIFIC AREAS OR TOPICS WITHIN THE RESEARCH 834 00:50:35,966 --> 00:50:39,469 THAT YOU FIND INTERESTING OR FUN OR IMPORTANT. 835 00:50:39,536 --> 00:50:51,848 YES, I WANT TO DRIVE. MY DAD. WOULD BE GOOD. OH, SO JAY IS 836 00:50:51,915 --> 00:50:54,484 INTERESTED IN DRIVING. 837 00:50:54,551 --> 00:50:55,485 OH! 838 00:50:55,552 --> 00:50:58,922 SO WHAT I ANSWER. ABOUT RESEARCH. SHE SAYS SHE WANTED TO 839 00:50:58,989 --> 00:51:00,490 DRIVE LIKE HER BIG BROTHERS. 840 00:51:00,557 --> 00:51:01,491 ABSOLUTELY. AND YOU CAN DO IT. OH. 841 00:51:01,558 --> 00:51:14,471 YEAH, THAT IS 22. US KEEPS IT. OKAY, HOLD ON. LET ME SAVE MY 842 00:51:14,538 --> 00:51:15,472 PART. 843 00:51:15,539 --> 00:51:18,141 OKAY, OKAY. SO IN TERMS OF RESEARCH FROM A PARENTAL 844 00:51:18,208 --> 00:51:20,811 PERSPECTIVE. OKAY. SO IN TERMS OF RESEARCH FROM A PARENTAL 845 00:51:20,877 --> 00:51:23,480 PERSPECTIVE, I THINK ANYTHING THAT WILL HELP JAYA LIVE HER 846 00:51:23,547 --> 00:51:24,481 BEST LIFE. OKAY. 847 00:51:24,548 --> 00:51:26,283 SO IN TERMS OF RESEARCH FROM A PARENTAL PERSPECTIVE, I THINK 848 00:51:26,349 --> 00:51:28,485 ANYTHING THAT WILL HELP JAYA LIVE HER BEST LIFE, AND TO BE AS 849 00:51:28,552 --> 00:51:29,486 INDEPENDENT AS POSSIBLE. 850 00:51:29,553 --> 00:51:33,557 I THINK ANYTHING THAT WILL HELP JAYA LIVE HER BEST LIFE. WHICH 851 00:51:33,623 --> 00:51:37,994 IS A GOOD THING. BUT WHAT I AM REALLY INTERESTED IN IS RESEARCH 852 00:51:38,061 --> 00:51:40,697 DEALING WITH TECHNOLOGY FOR INSTANCE, ALEXA, ALEXA WAS 853 00:51:40,764 --> 00:51:44,100 REALLY HELPFUL WHEN SHE HAD SURGERY BECAUSE SHE COULD CALL 854 00:51:44,167 --> 00:51:45,469 ME ON THE LEXI. 855 00:51:45,535 --> 00:51:48,972 I HAD TO RUN TO THE GROCERY STORE. SHE COULD CALL ME AND I 856 00:51:49,039 --> 00:51:51,475 WOULD ANSWER IT ON MY PHONE OR VOICE TO TEXT. 857 00:51:51,541 --> 00:51:53,810 SO IT WOULD BE REALLY NICE IF WHEN THEY MADE THAT TECHNOLOGY 858 00:51:53,877 --> 00:51:55,545 THEY HAD PEOPLE WITH DOWN SYNDROME OR OTHER SPEECH 859 00:51:55,612 --> 00:51:57,481 IMPEDIMENTS SO THAT THEY COULD GET USED TO THEIR VOICES. 860 00:51:57,547 --> 00:52:03,954 CAUSE I THINK THAT WOULD HELP THEM LIVE. THEY'RE EXTRAORDINARY 861 00:52:04,020 --> 00:52:08,492 LIVES OR TO DO GROCERIES OR BANKING. 862 00:52:08,558 --> 00:52:11,728 ALSO, OBESITY, ESPECIALLY WITHIN THE DOWN SYNDROME COMMUNITY, I 863 00:52:11,795 --> 00:52:16,466 AM CONVINCED THAT THERE IS SOME GENE THAT DOES NOT TELL THE WHEN 864 00:52:16,533 --> 00:52:17,467 THEY'RE FULL. 865 00:52:17,534 --> 00:52:20,470 I DON'T KNOW IF THAT'S A THING, BUT I WOULD LOVE TO KNOW IF IT 866 00:52:20,537 --> 00:52:21,471 IS. 867 00:52:21,538 --> 00:52:25,475 WE ARE HEADING INTO PUBERTY, SO THAT'S ALWAYS INTERESTING. AND 868 00:52:25,542 --> 00:52:28,678 THEN FINALLY, ANYTHING THAT WOULD IMPROVE COMPREHENSION, I 869 00:52:28,745 --> 00:52:31,481 THINK IS ALSO GONNA BE VERY BENEFICIAL. 870 00:52:31,548 --> 00:52:34,417 ABSOLUTELY. IT'S VERY INTERESTING. THANK YOU FOR 871 00:52:34,484 --> 00:52:36,486 SHARING THAT. NEXT SLIDE, PLEASE. 872 00:52:36,553 --> 00:52:39,489 THAT'S FINE. 873 00:52:39,556 --> 00:52:44,461 YEAH, CAN YOU SHARE ANY PAST EXPERIENCES YOU HAVE HAD WITH 874 00:52:44,528 --> 00:52:45,462 RESEARCH STUDIES? 875 00:52:45,529 --> 00:53:05,482 YES. THE FIRST STUDY. SO, SO, I WAS 10 YEARS OUT. 876 00:53:05,549 --> 00:53:13,490 I WORK. WITH THE KHANA. TO US. NICE. 877 00:53:13,557 --> 00:53:20,463 HAVE FUN. NEXT. 878 00:53:20,530 --> 00:53:34,477 SHE ALSO GIVE. ME, A. HEY, SOMETIMES IT WAS. DO TAKE. 879 00:53:34,544 --> 00:53:46,489 TO LOCK. 880 00:53:46,556 --> 00:53:47,490 OKAY. 881 00:53:47,557 --> 00:53:47,991 IT WAS HARD TO STAY AWAKE. GOOD. SO JAY'S FIRST RESEARCH FOR CISA 882 00:53:48,058 --> 00:53:48,491 CHILDREN'S HOSPITAL. 883 00:53:48,558 --> 00:53:54,097 THE RESEARCHER WAS WONDERFUL. IT WAS HARD FOR HER TO STAY AWAKE 884 00:53:54,164 --> 00:53:59,669 BECAUSE SHE AT THAT TIME WASN'T SLEEPING WELL AND WOULD WAKE UP 885 00:53:59,736 --> 00:54:02,472 IN THE MIDDLE OF THE NIGHT. 886 00:54:02,539 --> 00:54:03,473 OH. 887 00:54:03,540 --> 00:54:03,807 SO BY THE TIME WE GOT TO THE APPOINTMENT, SHE WAS EXTREMELY 888 00:54:03,873 --> 00:54:04,140 TIRED. SO. THEY HAD TO KIND OF THINK OUTSIDE THE BOX AND FIGURE 889 00:54:04,207 --> 00:54:04,474 OUT. 890 00:54:04,541 --> 00:54:09,479 THE BEST WAYS TO KEEP HER ENGAGED. 891 00:54:09,546 --> 00:54:14,284 THAT IS SO INTERESTING. AND, YEAH, SO YOU ENJOYED. IT'S MAX. 892 00:54:14,351 --> 00:54:16,486 IT HELPED YOU STAY AWAKE. 893 00:54:16,553 --> 00:54:17,487 YES. 894 00:54:17,554 --> 00:54:21,891 THAT'S WONDERFUL. THAT'S GREAT. AND SHE WAS VERY NICE AS WELL, 895 00:54:21,958 --> 00:54:23,493 RIGHT? YEAH, THAT'S WHAT. 896 00:54:23,560 --> 00:54:24,494 YES, VERY GOOD. OKAY. 897 00:54:24,561 --> 00:54:34,404 YES. AND I HAVE A B PASSBOOK GAME, HER, HER BEST FRIEND PINKY 898 00:54:34,471 --> 00:54:37,474 IS IN THE SLIDE. 899 00:54:37,540 --> 00:54:38,475 SO SHE THE BEST ANSWER. 900 00:54:38,541 --> 00:54:42,812 OH THAT'S YOUR BEST FRIEND. WOW. IS SHE, IS SHE ON THE WEBINAR 901 00:54:42,879 --> 00:54:44,481 RIGHT NOW? YOU DON'T KNOW. 902 00:54:44,547 --> 00:54:45,482 YES, I DON'T. I DON'T THINK SO. 903 00:54:45,548 --> 00:54:51,187 PROBABLY NOT. OKAY, THAT'S FINE. SHE CAN WALK THE RECORDING. 904 00:54:51,254 --> 00:54:53,490 OKAY, NEXT SLIDE PLEASE. 905 00:54:53,556 --> 00:54:58,461 OKAY. 906 00:54:58,528 --> 00:55:02,832 YEAH, ARE THERE ANY CHALLENGES OR BARRIERS THAT MIGHT AFFECT 907 00:55:02,899 --> 00:55:05,468 YOUR ABILITY TO PARTICIPATE IN RESEARCH? 908 00:55:05,535 --> 00:55:13,476 YES, I KID. ALL RIGHT, GO. 909 00:55:13,543 --> 00:55:16,479 YEAH, THAT IS TRUE. WE SHOULD LIKE TO EXPAND. YEAH. 910 00:55:16,546 --> 00:55:20,917 YEP, SO I HOPE. YES. SO JAYA DID MISS SUMMER CAMP TODAY. SHE WAS 911 00:55:20,984 --> 00:55:22,485 WILLING TO MISS IT TODAY. 912 00:55:22,552 --> 00:55:24,487 OH, THANK YOU. THANK YOU FOR. I'M SORRY THAT YOU MISSED IT. 913 00:55:24,554 --> 00:55:25,488 TO BE A PART OF THEIR RESEARCH. SO THAT WOULD BE SOMETHING THAT 914 00:55:25,555 --> 00:55:26,489 WOULD, AFFECT HER PARTICIPATION. 915 00:55:26,556 --> 00:55:33,797 I THINK. FOR ME, AS A PARENT OF MULTIPLE CHILDREN AND WORKING 916 00:55:33,863 --> 00:55:40,470 FULL TIME, IT WAS HARD TO COMMIT TO THE LONGITUDINAL STUDIES. 917 00:55:40,537 --> 00:55:47,477 SO I DO HAVE A DOCTORATE DEGREE. I UNDERSTAND THE IMPORTANCE OF 918 00:55:47,544 --> 00:55:54,484 THEM. AND AT THE TIME THAT YOU COMMIT TO IT, IT'S FINE. 919 00:55:54,551 --> 00:55:55,485 YEAH. 920 00:55:55,552 --> 00:55:57,821 AND THEN LIFE HAPPENS AND ALL OF A SUDDEN YOU'RE SCHEDULE THAT 921 00:55:57,887 --> 00:55:59,956 SEEMED CLEAR ISN'T ANYMORE. SO THAT IS A REAL CHALLENGE JUST 922 00:56:00,023 --> 00:56:01,491 TRYING TO FIGURE OUT HOW TO MANAGE EVERYTHING. 923 00:56:01,558 --> 00:56:02,492 SO THE OTHER CHALLENGE I THINK WHICH FORTUNATELY IS NOT AN 924 00:56:02,559 --> 00:56:03,493 ISSUE FOR ME, THOUGH AGAIN IS THIS ISSUE OF TIME. 925 00:56:03,560 --> 00:56:07,464 SO I AM FORTUNATE THAT I'M A PROFESSOR. I ONLY TEACH A 926 00:56:07,530 --> 00:56:09,466 CERTAIN NUMBER OF DAYS A WEEK. 927 00:56:09,532 --> 00:56:16,206 I CAN REARRANGE MY SCHEDULE IF NECESSARY, BUT NOT EVERYONE HAS 928 00:56:16,272 --> 00:56:24,180 A SCHEDULE THAT FLEXIBLE. SO I THINK THAT COULD BE A BARRIER OR 929 00:56:24,247 --> 00:56:28,485 WOULD BE A BARRIER FOR MOST PEOPLE. 930 00:56:28,551 --> 00:56:29,486 YEAH. 931 00:56:29,552 --> 00:56:29,819 MOST OF THE PEOPLE THAT WE KNOW ARE FRIENDS WOULD HAVE BEEN 932 00:56:29,886 --> 00:56:30,153 UNABLE TO COMPLETE THE RESEARCH THAT JAY WAS IN BECAUSE THEY 933 00:56:30,220 --> 00:56:30,487 WOULD HAVE REQUIRED THEM TO LEAVE WORK TO GO ACROSS TOWN. 934 00:56:30,553 --> 00:56:36,493 IT JUST WOULD HAVE BEEN TOO MUCH. 935 00:56:36,559 --> 00:56:40,463 YEAH. OKAY. WELL, THANK YOU FOR SHARING THAT. 936 00:56:40,530 --> 00:56:42,465 NEXT SLIDE, PLEASE. 937 00:56:42,532 --> 00:56:45,468 NEXT TIME UP. OKAY, THIS IS YOUR LAST ONE. SHE'S GONNA ASK YOU 938 00:56:45,535 --> 00:56:46,469 THE QUESTION. 939 00:56:46,536 --> 00:56:51,207 YEAH, HOW WILL YOU LIKE YOUR PARTICIPATION IN RESEARCH TO 940 00:56:51,274 --> 00:56:55,478 HAVE A MEANINGFUL IMPACT ON THE DUMB SYNDROME COMMUNITY? 941 00:56:55,545 --> 00:57:05,121 HI. GOOD. HELP PEOPLE WITH DOUBT. AND LIKE AND MY FRIENDS 942 00:57:05,188 --> 00:57:09,492 LIKE ME AND MY FRIENDS. 943 00:57:09,559 --> 00:57:10,493 OKAY. 944 00:57:10,560 --> 00:57:16,466 ABSOLUTELY. ABSOLUTELY. GOOD JOB. THANK YOU SO MUCH, JEN. 945 00:57:16,533 --> 00:57:17,467 THANK YOU. 946 00:57:17,534 --> 00:57:20,637 YOU DID A WONDERFUL JOB. THANKS FOR MISSING CAMP FOR US. THANK 947 00:57:20,703 --> 00:57:22,472 YOU FOR HELPING US. WE APPRECIATE IT. 948 00:57:22,539 --> 00:57:30,346 THANK YOU. AND MY MOMMY IS GOING TO GIVE ME. I KNEW HE. I DID 949 00:57:30,413 --> 00:57:33,483 PROMISE HER A TARGET TRIP AFTERWARDS. 950 00:57:33,550 --> 00:57:34,484 OH, OUTSTANDING. WONDERFUL. HAVE FUN. 951 00:57:34,551 --> 00:57:39,489 SO. THAT IS GOOD. HEY, AND MCDONALDS, YES. 952 00:57:39,556 --> 00:57:43,493 MMM, WONDERFUL. THANK YOU. 953 00:57:43,560 --> 00:57:50,466 YEAH, DEFINITELY. OKAY, VERY FIRST. OKAY, HOLD ON, YOU'RE 954 00:57:50,533 --> 00:57:51,467 FINISHED. 955 00:57:51,534 --> 00:57:54,070 THANK YOU. NOW WE'RE GONNA ASK YOUR MOMMY A FEW QUESTIONS, 956 00:57:54,137 --> 00:57:55,471 OKAY? HEY, IT'S HER TURN NOW. 957 00:57:55,538 --> 00:57:56,472 HI. 958 00:57:56,539 --> 00:57:58,474 NO, SHE'S THE ROCK STAR. 959 00:57:58,541 --> 00:58:03,479 . THAT OKAY. 960 00:58:03,546 --> 00:58:04,480 THANKS. 961 00:58:04,547 --> 00:58:07,684 OKAY. LISHA, HOW DO YOU FEEL ABOUT YOUR CHILD'S PARTICIPATION 962 00:58:07,750 --> 00:58:10,887 IN DOWN SYNDROME RESEARCH AND WHAT EXPECTATIONS OR CONCERNS DO 963 00:58:10,954 --> 00:58:12,488 YOU HAVE FOR HER PARTICIPATION? 964 00:58:12,555 --> 00:58:14,591 SO I FEEL THAT IT'S AN ESSENTIAL, RIGHT? RESEARCH GETS 965 00:58:14,657 --> 00:58:16,492 US TO THE NEXT LEVEL. IT HELPS US PROGRESS. 966 00:58:16,559 --> 00:58:22,065 SO I UNDERSTAND HOW VITAL IT IS AND I ALSO UNDERSTAND THE 967 00:58:22,131 --> 00:58:26,236 IMPORTANCE OF DIVERSE VOICES AS THE 2. PREVIOUS PRESENTERS 968 00:58:26,302 --> 00:58:29,472 MENTIONED WHEN WE TALK ABOUT DIVERSE VOICES. 969 00:58:29,539 --> 00:58:31,207 AS THE 2 PREVIOUS PRESENTERS MENTIONED, WHEN WE TALK ABOUT 970 00:58:31,274 --> 00:58:32,408 DIVERSITY AND DIVERSE PERSPECTIVES, IT'S THE 2 971 00:58:32,475 --> 00:58:33,943 PREVIOUS PRESENTERS MENTIONED WHEN WE TALK ABOUT DIVERSITY AND 972 00:58:34,010 --> 00:58:35,478 DIVERSE PERSPECTIVES, IT'S NOT JUST RACE, IT'S ALSO COGNITIVE 973 00:58:35,545 --> 00:58:36,479 ABILITY, IT'S SOCIOECONOMIC STATUS. 974 00:58:36,546 --> 00:58:39,215 SO THERE ARE A LOT OF FACTORS TO CONSIDER. MY GOAL AS A PARENT IS 975 00:58:39,282 --> 00:58:40,483 FOR JAYA TO LIVE HER BEST LIFE. 976 00:58:40,550 --> 00:58:43,553 BUT IT'S NOT ONLY FOR JAYA TO LIVE HER BEST LIFE, RIGHT? IN 977 00:58:43,620 --> 00:58:45,889 THIS COMMUNITY, WE HAVE MADE LIFE LONG FRIENDS, PEOPLE WHO 978 00:58:45,955 --> 00:58:49,492 WILL GO OUT OF THEIR WAY FOR US AND WE WOULD DO THE SAME FOR 979 00:58:49,559 --> 00:58:50,493 THEM. 980 00:58:50,560 --> 00:58:55,598 SO IT'S IMPORTANT THAT WE DO WHAT WE CAN SO THAT THE ENTIRE 981 00:58:55,665 --> 00:58:59,936 COMMUNITY IS ABLE TO PROGRESS. MY I DO HAVE CONCERNS WITH 982 00:59:00,003 --> 00:59:03,473 RESEARCH ONE IS THAT THEORY AND PRACTICE ARE DIFFERENT. 983 00:59:03,539 --> 00:59:08,544 IT'S SO AS RESEARCHERS, YOU CAN RESEARCH DOWN SYNDROME AND KIND 984 00:59:08,611 --> 00:59:14,083 OF UNDERSTAND A CHECKLIST RIGHT OF WHAT DOWN SYNDROME IS OR SOME 985 00:59:14,150 --> 00:59:15,485 WAYS TO BE. 986 00:59:15,551 --> 00:59:19,589 TO HELP PEOPLE WITH DOWN SYNDROME, BUT THAT'S VERY 987 00:59:19,656 --> 00:59:25,094 DIFFERENT THAN. BEING A PART OF THE COMMUNITY AND THE THEORY AND 988 00:59:25,161 --> 00:59:26,462 PRACTICE ARE DIFFERENT. 989 00:59:26,529 --> 00:59:31,434 AND THE REASON I MENTION THAT IS BECAUSE WHEN IT COMES TO A 990 00:59:31,501 --> 00:59:35,238 RESEARCH DESIGN OR RESEARCH QUESTIONS. BEING A PART OF THE 991 00:59:35,305 --> 00:59:39,809 COMMUNITY WILL HELP YOU AS YOU FIGURE OUT WHAT WHAT IS THE 992 00:59:39,876 --> 00:59:42,478 INFORMATION ONE THAT THE COMMUNITY WANTS, RIGHT? 993 00:59:42,545 --> 00:59:47,050 SO WHAT IS THE RESEARCH THAT THE PEOPLE IN THE COMMUNITY THINKS 994 00:59:47,116 --> 00:59:52,355 IS VITAL. AND 2, WHAT IS THE BEST WAY FOR US TO GO ABOUT 995 00:59:52,422 --> 00:59:53,489 DESIGNING THESE STUDIES. 996 00:59:53,556 --> 00:59:55,358 AND AFTER YOU GET TO KNOW PEOPLE IN THE COMMUNITY, YOU MAY COME 997 00:59:55,425 --> 00:59:56,492 UP WITH A DIFFERENT WAY TO DO THAT. 998 00:59:56,559 --> 01:00:02,398 SO SOMETIMES WHEN I'M ANSWERING QUESTIONS, IT ALMOST FEELS LIKE 999 01:00:02,465 --> 01:00:08,938 IT'S YOUR WORKING ON A DEFICIT MODEL BECAUSE THE QUESTIONS THAT 1000 01:00:09,005 --> 01:00:12,475 WE'RE ASKED BEING ASKED TO ANSWER. 1001 01:00:12,542 --> 01:00:16,479 ARE KIND OF BEING COMPARED AGAINST NEUROTYPICAL. CHILDREN, 1002 01:00:16,546 --> 01:00:21,985 RIGHT, OR YOUR TYPICAL PEOPLE WHO ARE AT GRADE LEVEL, WHATEVER 1003 01:00:22,051 --> 01:00:23,486 THAT REALLY MEANS. 1004 01:00:23,553 --> 01:00:27,256 INSTEAD OF JUST COMPARING THIS PARTICULAR COMMUNITY TO ITSELF, 1005 01:00:27,323 --> 01:00:32,795 IF THAT MAKES SENSE. AND SO IT'S REALLY HARD TO GO INTO IT 1006 01:00:32,862 --> 01:00:37,467 KNOWING THAT WE'RE BEING COMPARED TO A GROUP THAT IS NOT 1007 01:00:37,533 --> 01:00:38,468 LIKE US. 1008 01:00:38,534 --> 01:00:45,241 RIGHT? AND SO II WOULD LIKE TO SEE RESEARCH FOR US. WITH US AS 1009 01:00:45,308 --> 01:00:50,546 THE NORM, WITH PEOPLE WITH DOWN SYNDROME AS REALLY THE CENTRAL 1010 01:00:50,613 --> 01:00:52,482 PARTICIPANTS IN THE RESEARCH. 1011 01:00:52,548 --> 01:00:56,919 I THINK IT'S IMPORTANT TO ALSO THINK OUTSIDE OF THE BOX. LIKE 1012 01:00:56,986 --> 01:00:59,489 WHAT IS GONNA MAKE THE MOST SENSE? 1013 01:00:59,555 --> 01:01:02,492 SO WHEN JAYA WAS TALKING ABOUT SHAQUANA, JAYA WAS GETTING VERY 1014 01:01:02,558 --> 01:01:03,493 DISTRACTED. 1015 01:01:03,559 --> 01:01:05,895 SHE WAS TIRED AND SHE NOTICED THAT CHAKA HAD THIS PRETTY 1016 01:01:05,962 --> 01:01:08,798 LITTLE SCRUNCHY IN HER HAIR AND SO SHE SAID YOU KNOW NEXT TIME 1017 01:01:08,865 --> 01:01:11,467 I'LL BRING YOU A SCRUNCHY AND SHE DID SHE REMEMBERED AND SHE 1018 01:01:11,534 --> 01:01:12,468 DID IT. 1019 01:01:12,535 --> 01:01:13,469 RIGHT. THAT'S SMART. 1020 01:01:13,536 --> 01:01:16,672 SHE WAS VERY OPEN TO ACCOMMODATING US WITH BREAKS AND 1021 01:01:16,739 --> 01:01:20,209 SNACKS. SO I THINK BEING FLEXIBLE AND BEING WILLING TO DO 1022 01:01:20,276 --> 01:01:23,413 THINGS A LITTLE BIT DIFFERENT, UNDERSTANDING THAT IT STILL FITS 1023 01:01:23,479 --> 01:01:26,649 WITHIN THE CONFINES OF THE STUDY YOU'VE OUTLINED, BUT BEING 1024 01:01:26,716 --> 01:01:30,486 WILLING TO SAY I'M GONNA HAVE TO DO THINGS DIFFERENTLY, I THINK 1025 01:01:30,553 --> 01:01:31,487 IS BENEFICIAL. 1026 01:01:31,554 --> 01:01:37,960 SO I HAVE CONCERNS THAT SOMETIMES PEOPLE WILL BE SO 1027 01:01:38,027 --> 01:01:42,465 STRINGENT. THAT THEY WON'T MAKE THOSE ACCOMMODATIONS. 1028 01:01:42,532 --> 01:01:46,335 THAT IS TRUE. WELL, WE HAVE MANY RESEARCHERS RIGHT NOW ATTENDING 1029 01:01:46,402 --> 01:01:49,472 THIS. WEBINAR AND HOPEFULLY THEY'LL TAKE NOTES OF YOUR 1030 01:01:49,539 --> 01:01:50,473 SUGGESTIONS. 1031 01:01:50,540 --> 01:01:55,478 WONDERFUL. THANK YOU. NEXT SLIDE, PLEASE. 1032 01:01:55,545 --> 01:01:59,916 HOW CAN RESEARCHERS OR THE NH ENCOURAGE MORE FAMILIES FROM 1033 01:01:59,982 --> 01:02:03,486 YOUR COMMUNITY TO TAKE PART IN RESEARCH STUDIES? 1034 01:02:03,553 --> 01:02:07,156 SO I ALWAYS WANTED TO TELL PEOPLE ABOUT THE VERY BEST 1035 01:02:07,223 --> 01:02:11,794 RESEARCH STUDY I WAS EVER A PART OF. AND IT INCLUDED ALL OF THE 1036 01:02:11,861 --> 01:02:14,464 ITEMS THAT ARE LISTED ON THIS POWERPOINT SIDE. 1037 01:02:14,530 --> 01:02:18,234 I HAVE A FRIEND WHO IS A RESEARCHER AND SHE SAID WE WANT 1038 01:02:18,301 --> 01:02:21,437 TO DO RESEARCH ABOUT DOWN SYNDROME WE WANT TO MAKE SURE 1039 01:02:21,504 --> 01:02:23,473 THAT WE INCLUDE THE AFRICAN-AMERICAN COMMUNITY, WHAT 1040 01:02:23,539 --> 01:02:24,474 CAN WE DO? 1041 01:02:24,540 --> 01:02:30,346 SO I WENT BACK TO MY GROUP AS A BRIDGE AND I SAID, LISTEN, THERE 1042 01:02:30,413 --> 01:02:33,483 ARE SOME PEOPLE THAT WANT TO DO RESEARCH. 1043 01:02:33,549 --> 01:02:36,052 ARE YOU INTERESTED IN PARTICIPATING? WHAT IF WE ALL DO 1044 01:02:36,119 --> 01:02:39,489 IT TOGETHER? SO WHAT THEY DID IS THEY CAME TO OUR DOWN SYNDROME 1045 01:02:39,555 --> 01:02:40,490 ASSOCIATION'S OFFICE. 1046 01:02:40,556 --> 01:02:44,727 WE, CAME TOGETHER IN THE EVENING. WE HAD A BIG FOCUS 1047 01:02:44,794 --> 01:02:49,332 GROUP. SO PEOPLE WERE THERE WITH PEOPLE THAT THEY ALREADY KNEW OR 1048 01:02:49,398 --> 01:02:50,466 FELT COMFORTABLE WITH. 1049 01:02:50,533 --> 01:02:53,402 AND THEN THEY HAD A SEPARATE ROOM IN THE SAME BUILDING FOR 1050 01:02:53,469 --> 01:02:55,571 CHILDCARE. SO THAT PARENTS COULD PARTICIPATE AND THEIR CHILDREN 1051 01:02:55,638 --> 01:02:58,541 WERE IN ANOTHER ROOM BUT IN THE SAME BUILDING, THEY GAVE US 1052 01:02:58,608 --> 01:03:01,010 DINNER, THEY GAVE THE KIDS DINNER AND THEN THE COMPENSATION 1053 01:03:01,077 --> 01:03:04,480 WHICH I THINK WAS A GIFT CARD, BUT THEY GAVE IT TO US RIGHT 1054 01:03:04,547 --> 01:03:05,481 AWAY. 1055 01:03:05,548 --> 01:03:09,752 IT WASN'T SOMETHING WHERE WE HAD TO WAIT AROUND FOR IT. IT WAS, I 1056 01:03:09,819 --> 01:03:12,488 MEAN, IT WAS JUST EVERY ELEMENT OF A WONDERFUL. 1057 01:03:12,555 --> 01:03:15,858 RESEARCH PROJECT THAT WAS FLEXIBLE AND REALLY TOOK OUR 1058 01:03:15,925 --> 01:03:20,396 NEEDS INTO CONSIDERATION. AND SO I ABSOLUTELY LOVED IT. SO WHAT I 1059 01:03:20,463 --> 01:03:24,133 SAID HERE ABOUT NO POLITICAL AGENDA IS OFTENTIMES PEOPLE COME 1060 01:03:24,200 --> 01:03:28,304 TO OUR COMMUNITY SPECIFICALLY JUST TO TRY AND GET US TO 1061 01:03:28,371 --> 01:03:32,475 PARTICIPATE IN RESEARCH, BUT WE DON'T SEE THEM ANY TIME AFTER 1062 01:03:32,542 --> 01:03:33,476 THAT. 1063 01:03:33,543 --> 01:03:36,679 SO, DR. ANNA ESPSON FROM CINCINNATI CHILDREN'S HOSPITAL 1064 01:03:36,746 --> 01:03:41,083 DOES A REALLY GOOD JOB OF ENGAGING WITH OUR COMMUNITY AND 1065 01:03:41,150 --> 01:03:45,855 BEING A PART OF THE COMMUNITY SO THAT IT SHE DOES NEED 1066 01:03:45,922 --> 01:03:49,058 PARTICIPANTS FOR RESEARCH, PEOPLE ARE WILLING TO HELP 1067 01:03:49,125 --> 01:03:53,462 BECAUSE THEY KNOW HER AND WE FEEL THAT SHE SUPPORTS OUR 1068 01:03:53,529 --> 01:03:55,464 COMMUNITY OUTSIDE OF JUST NEEDING 1069 01:03:55,531 --> 01:03:59,802 RESEARCH. THE LAST THING I WOULD SAY IS THAT RESEARCH IS OFTEN 1070 01:03:59,869 --> 01:04:03,406 VERY ABSTRACT. SO I REMEMBER WRITING MY DISSERTATION AND ALL 1071 01:04:03,472 --> 01:04:08,878 THE RESEARCH ARTICLES I HAD TO DO AND I HAD TO READ AND I DO 1072 01:04:08,945 --> 01:04:12,481 NOT WANT TO READ ANY MORE RESEARCH ARTICLE, ANY MORE 1073 01:04:12,548 --> 01:04:13,482 JOURNAL ARTICLES. 1074 01:04:13,549 --> 01:04:17,520 BUT IF THERE IS RESEARCH FOR INSTANCE ON COGNITION OR 1075 01:04:17,587 --> 01:04:21,591 COMPREHENSION OR BEHAVIOR AND AFTER THE STUDY WAS COMPLETE IF 1076 01:04:21,657 --> 01:04:26,829 SOMEONE WOULD COME BACK TO ME WITH ONE PAGE THAT I COULD GIVE 1077 01:04:26,896 --> 01:04:28,464 TO JAY'S INTERVENTION SPECIALIST. 1078 01:04:28,531 --> 01:04:33,636 HERE IS HOW YOU CAN REALLY HELP JAYA OR SOME NOTES ON WHAT I 1079 01:04:33,703 --> 01:04:35,471 COULD SPECIFICALLY DO AT HOME. 1080 01:04:35,538 --> 01:04:40,309 HERE ARE 3 THINGS BASED ON OUR WORK WITH JAYA THAT YOU CAN DO 1081 01:04:40,376 --> 01:04:44,113 TO HELP HER COMPREHENSION AT HOME, THEN I WOULD FEEL MORE 1082 01:04:44,180 --> 01:04:45,481 CONNECTED TO THE RESEARCH. 1083 01:04:45,548 --> 01:04:46,482 SO. 1084 01:04:46,549 --> 01:04:50,086 THIS IS SO WONDERFUL. THANK YOU. THANK YOU. IT'S VALUABLE 1085 01:04:50,152 --> 01:04:54,423 INFORMATION THAT WE NEED TO HEAR FROM THE COMMUNITY AND THANK YOU 1086 01:04:54,490 --> 01:04:55,491 FOR SHARING THIS. 1087 01:04:55,558 --> 01:04:59,495 TO MAKE IT A BETTER EXPERIENCE AND FOR FAMILIES TO REALLY ENJOY 1088 01:04:59,562 --> 01:05:02,798 PARTICIPATING AND FEEL THAT THEY'RE PART OF IT AND THAT 1089 01:05:02,865 --> 01:05:05,468 THEY'RE GOING TO GET RESULTS FROM IT AFTERWARDS. 1090 01:05:05,534 --> 01:05:09,105 TRULY APPRECIATE IT. AND THANK YOU FOR YOUR PARTICIPATION AS 1091 01:05:09,171 --> 01:05:13,476 WELL TODAY. WE KNOW YOU'RE SO BUSY AND WE THANK YOU BOTH. 1092 01:05:13,542 --> 01:05:18,481 AND I, SEND IT BACK TO SJETA. DR. 1093 01:05:18,547 --> 01:05:23,486 YES, THANK YOU. BOTH TO THEISHA AND JAYA FOR THAT. WONDERFUL 1094 01:05:23,552 --> 01:05:24,487 INSIGHT. 1095 01:05:24,553 --> 01:05:33,129 SO NOW I WILL HAND IT BACK TO DR. MELISSA PARISI FOR CLOSING 1096 01:05:33,195 --> 01:05:38,467 AND AFTER THAT WE WILL DO OUR Q&A. 1097 01:05:38,534 --> 01:05:42,004 THANK YOU VERY MUCH FOR AN OPPORTUNITY TO. TRY TO WRAP 1098 01:05:42,071 --> 01:05:45,875 THINGS UP AND WE'VE HAD A REALLY RICH DISCUSSION SO FAR THIS 1099 01:05:45,941 --> 01:05:50,079 AFTERNOON AND I DON'T WANT TO TAKE A LOT OF TIME TO PROLONG 1100 01:05:50,146 --> 01:05:53,616 THINGS BECAUSE I REALLY WANT THERE TO BE SOME OPEN QUESTION 1101 01:05:53,683 --> 01:05:57,486 AND ANSWERS, BUT I WOULD REALLY LIKE TO FIRST OF ALL THANK 1102 01:05:57,553 --> 01:06:01,357 OUR EXCELLENT SPEAKERS. WE HEARD FROM DR. KAREEM WATSON AND THE 1103 01:06:01,424 --> 01:06:05,594 ALL OF US RESEARCH PROGRAM ABOUT NEEDING TO MOVE AWAY FROM ABOUT 1104 01:06:05,661 --> 01:06:09,465 NEEDING TO MOVE AWAY FROM THE ONE SIZE FITS ALL MENTALITY. 1105 01:06:09,532 --> 01:06:13,069 FOR RESEARCH TO REALLY PROMOTE DIVERSITY AND INCLUSION. THE 1106 01:06:13,135 --> 01:06:17,073 FACT THAT THAT RESEARCH ENDEAVOR, THE ALL OF US PROGRAM 1107 01:06:17,139 --> 01:06:21,477 IS REALLY TRYING TO ENSURE THAT OVER 75% OF THE PARTICIPANTS. 1108 01:06:21,544 --> 01:06:25,014 COME FROM POPULATIONS THAT ARE UNDERREPRESENTED IN BIOMEDICAL 1109 01:06:25,081 --> 01:06:29,485 RESEARCH IS REALLY KEY AND HE EMPHASIZED THE IMPORTANCE OF 1110 01:06:29,552 --> 01:06:30,486 TRUST. 1111 01:06:30,553 --> 01:06:33,155 AND RELATIONSHIP BUILDING TO REALLY DEVELOP THOSE ALLIANCES, 1112 01:06:33,222 --> 01:06:36,125 THOSE PARTNERSHIPS THAT WILL ENHANCE THE ABILITY TO ENSURE 1113 01:06:36,192 --> 01:06:39,462 THAT POPULATIONS FEEL LIKE THEY'RE A PART OF THE RESEARCH. 1114 01:06:39,528 --> 01:06:44,033 AND THAT THEY CAN BE INCLUDED. HE TALKED ALSO ABOUT 1115 01:06:44,100 --> 01:06:47,236 INTERSECTIONALITY AND THE IMPORTANCE OF PARTICIPANT IN 1116 01:06:47,303 --> 01:06:51,841 AMBASSADORS AND KEEPING IN MIND THAT, YOU KNOW, WE CAN'T 1117 01:06:51,907 --> 01:06:55,945 PIGEONHOLE PEOPLE INTO JUST ONE CATEGORY OR ANOTHER BECAUSE 1118 01:06:56,011 --> 01:07:00,983 PEOPLE ARE MUCH MORE COMPLICATED THAN THAT AND THEY MAY HAVE 1119 01:07:01,050 --> 01:07:05,121 MULTIPLE AREAS WHERE THEY ARE UNDERREPRESENTED AND ALL OF 1120 01:07:05,187 --> 01:07:06,489 THOSE NEED TO 1121 01:07:06,555 --> 01:07:10,993 BE ACKNOWLEDGED. AND HE ALSO REMINDED US ABOUT THE IMPORTANT. 1122 01:07:11,060 --> 01:07:16,832 THEME AND MOTTO OF NOTHING ABOUT US WITHOUT US, WHICH I THINK IS 1123 01:07:16,899 --> 01:07:23,139 SOMETHING THAT WE ALL WANT TO KEEP IN MIND AS WE TRY TO CREATE 1124 01:07:23,205 --> 01:07:24,473 DIVERSE RESEARCH PROGRAMS. 1125 01:07:24,540 --> 01:07:28,611 DR. EMILY RAMIREZ FROM UT HEALTH SYSTEM IN SAN ANTONIO. ALSO 1126 01:07:28,677 --> 01:07:31,981 TALKED TO US SPECIFICALLY ABOUT HER EXPERIENCES TRYING TO 1127 01:07:32,047 --> 01:07:34,984 INCREASE PARTICIPATION OF THE LATINO POPULATION IN RESEARCH 1128 01:07:35,050 --> 01:07:36,485 SPECIFICALLY RELATED TO CANCER. 1129 01:07:36,552 --> 01:07:42,658 CLINICAL TRIALS. AND SHE REMINDED US THAT ALTHOUGH THE 1130 01:07:42,725 --> 01:07:50,232 LATINO POPULATION REPRESENTS 19% OF THE US POPULATION, ONLY 4% OF 1131 01:07:50,299 --> 01:07:56,405 FDA DRUG TRIALS AND 10% OF NATIONAL CANCER INSTITUTED 1132 01:07:56,472 --> 01:07:58,474 SPONSORED CLINICAL TRIALS. 1133 01:07:58,541 --> 01:08:04,280 INCLUDE PEOPLE WHO ARE LATINO. AND SO THERE ARE MANY BARRIERS 1134 01:08:04,346 --> 01:08:08,484 TO PARTICIPATION, BUT DR. RAMIREZ SHARED WITH US. 1135 01:08:08,551 --> 01:08:13,722 SOME OF THE REALLY IMPORTANT STRATEGIES THAT THEY ARE TAKING. 1136 01:08:13,789 --> 01:08:19,462 IN, TEXAS TO TRY TO BOOST PARTICIPATION IN MANY OF THESE. 1137 01:08:19,528 --> 01:08:24,500 STUDIES AND THE IMPORTANCE OF NOT JUST HAVING AWARENESS 1138 01:08:24,567 --> 01:08:30,105 RAISING, BUT ALSO TO REALLY ENGAGE TO INFORM THOSE CHOICES 1139 01:08:30,172 --> 01:08:33,476 THROUGH ONLINE RESOURCES SUCH AS VIDEOS. 1140 01:08:33,542 --> 01:08:38,280 BOOKLETS, PATIENT NAVIGATORS, AND A WHOLE VARIETY OF 1141 01:08:38,347 --> 01:08:43,686 MULTIDISCIPLINARY SOCIAL MEDIA AND OTHER TYPES OF APPROACHES TO 1142 01:08:43,752 --> 01:08:45,488 REALLY ENCOURAGE PARTICIPATION. 1143 01:08:45,554 --> 01:08:50,993 THROUGH THE SAHOUD AMERICA MODEL AND OTHERS. AND THEN FINALLY, I 1144 01:08:51,060 --> 01:08:55,464 WANNA THANK. ARE REPRESENTATIVES FROM THE DOWN SYNDROME COMMUNITY 1145 01:08:55,531 --> 01:08:58,467 WHO HAVE PARTICIPATED IN RESEARCH, DR. 1146 01:08:58,534 --> 01:09:03,973 LISHA THROWER AND HER DAUGHTER JAYA AND I'M GOING TO ADD MY 1147 01:09:04,039 --> 01:09:09,478 EARLY HAPPY BIRTHDAY WISHES TO JAYA AS WELL SINCE FRIDAY IS HER 1148 01:09:09,545 --> 01:09:10,479 TWELFTH BIRTHDAY. 1149 01:09:10,546 --> 01:09:14,817 IT WAS REALLY NICE TO HEAR FROM YOU ABOUT YOUR PERSPECTIVES ON 1150 01:09:14,884 --> 01:09:18,787 PARTICIPATING IN RESEARCH. FROM BOTH OF YOU AND JAYA, YOU KNOW, 1151 01:09:18,854 --> 01:09:22,391 IT'S NOTHING LIKE HEARING STRAIGHT FROM THE PERSON WHO HAS 1152 01:09:22,458 --> 01:09:26,395 BEEN DOING THE RESEARCH AND SAYING, YOU KNOW, MAKE SURE THAT 1153 01:09:26,462 --> 01:09:27,463 WE HAVE BREAKS. 1154 01:09:27,530 --> 01:09:32,167 AND MAKE SURE THAT, YOU HELP MAKE, HELP ENSURE THAT MY 1155 01:09:32,234 --> 01:09:36,038 FRIENDS ARE ALSO PARTICIPATING AND IN ACCOMMODATING WORK AND 1156 01:09:36,105 --> 01:09:40,342 SCHOOL SCHEDULES AND WE'RE GRATEFUL THAT YOU TOOK TIME OUT 1157 01:09:40,409 --> 01:09:45,481 OF YOUR SUMMER CAMP TODAY TO COME JOIN US ON THIS WEBINAR. 1158 01:09:45,548 --> 01:09:50,019 AND DR. THROWER, YOUR PERSPECTIVES AS BOTH A MOM AND A 1159 01:09:50,085 --> 01:09:52,488 RESEARCHER I THINK ARE VERY INSIGHTFUL. 1160 01:09:52,555 --> 01:09:58,360 YOU KNOW, WHAT IS IT THAT WE THINK IS VITAL REALLY NEEDS TO 1161 01:09:58,427 --> 01:10:03,766 ALSO COME FROM THE COMMUNITY. WE NEED TO MAKE SURE THAT WE 1162 01:10:03,832 --> 01:10:07,803 ACKNOWLEDGE AND WE, RESPECT PEOPLE'S BUSY LIVES AND THEIR 1163 01:10:07,870 --> 01:10:12,308 BUSY SCHEDULES AND WE DO EVERYTHING IN OUR POWER TO 1164 01:10:12,374 --> 01:10:15,477 ENSURE THAT THEY CAN PARTICIPATE IN RESEARCH. 1165 01:10:15,544 --> 01:10:19,281 SO MY FINAL WORDS ARE THANK YOU AGAIN FOR OUR SPEAKERS. WE'VE 1166 01:10:19,348 --> 01:10:21,483 REALLY ENJOYED HEARING YOUR WORDS OF WISDOM. 1167 01:10:21,550 --> 01:10:25,821 THANK YOU TO OUR PARTICIPANTS, FAMILIES, INVESTIGATORS, AND 1168 01:10:25,888 --> 01:10:31,794 MEMBERS OF THE DOWN SYNDROME COMMUNITY AS WE EMBARK UPON OUR 1169 01:10:31,860 --> 01:10:37,199 CONTINUED NEXT 5 YEARS OF THE INCLUDE RESEARCH PROGRAM WE 1170 01:10:37,266 --> 01:10:40,469 REALLY WE'LL CONTINUE TO EMPHASIZE DIVERSITY. 1171 01:10:40,536 --> 01:10:43,105 INCLUSION, EQUITY, AND ACCESSIBILITY. AND WE WILL 1172 01:10:43,172 --> 01:10:47,610 APPRECIATE HEARING FROM ALL OF YOU ALONG THE WAY TO MAKE SURE 1173 01:10:47,676 --> 01:10:49,478 THAT WE GET IT RIGHT. 1174 01:10:49,545 --> 01:10:55,017 A FINAL THANKS TO OUR ASL AND SPANISH INTERPRETERS AND ALSO TO 1175 01:10:55,084 --> 01:11:00,089 THE EXCELLENT TEAM FROM THE NIH AND FROM PALLADIAN PARTNERS WHO 1176 01:11:00,155 --> 01:11:01,490 ORGANIZED THIS WEBINAR. 1177 01:11:01,557 --> 01:11:05,127 SO STAY TUNED FOR FUTURE OPPORTUNITIES TO PARTICIPATE IN 1178 01:11:05,194 --> 01:11:09,598 DE IA A WEBINARS UNDER THE AUSPICES OF THE INCLUDE PROJECT 1179 01:11:09,665 --> 01:11:14,470 AND WITH THAT I WILL TURN IT OVER FOR QUESTIONS AND ANSWERS. 1180 01:11:14,536 --> 01:11:16,472 THANK YOU. 1181 01:11:16,538 --> 01:11:21,143 THANK YOU, DR. PERISI. SO WE HAVE ABOUT 10 MIN FOR QUESTIONS 1182 01:11:21,210 --> 01:11:26,215 AND ANSWERS. SO PLEASE, PUT IT IN THE CHAT, PUT YOUR QUESTIONS 1183 01:11:26,281 --> 01:11:27,483 IN THE CHAT. 1184 01:11:27,549 --> 01:11:32,488 YOU CAN ALSO, RAISE YOUR HAND AND ASK YOUR QUESTIONS OF THE 1185 01:11:32,554 --> 01:11:37,059 SPEAKERS. AND, WHILE THOSE ARE COMING IN, I WOULD JUST, LIKE 1186 01:11:37,126 --> 01:11:42,464 TO, I SAW VALERIE COTTON ADDED A QUESTION IN THE CHAT FOR DR. 1187 01:11:42,531 --> 01:11:45,668 WATSON ABOUT HOW MANY INDIVIDUALS WOULD DOWN SYNDROME 1188 01:11:45,734 --> 01:11:50,472 ARE IN THE ALL OF US DATA AND I KNOW THAT DR. 1189 01:11:50,539 --> 01:11:55,277 TRACY ROSSER ANSWERED IT AND JUST TO COMMENT THAT IT'S WE DO 1190 01:11:55,344 --> 01:11:58,480 HAVE A REGISTRY FOR INDIVIDUALS WITH DOWN SYNDROME. 1191 01:11:58,547 --> 01:12:05,087 CALL DS CONNECT AND IF THERE ARE WAYS FOR US TO PARTNER AND SEND 1192 01:12:05,154 --> 01:12:06,488 OUT NOTIFICATION TO. 1193 01:12:06,555 --> 01:12:09,358 AND IF THERE ARE WAYS FOR US TO PARTNER AND SEND OUT 1194 01:12:09,425 --> 01:12:11,760 NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS CONNECT SEND 1195 01:12:11,827 --> 01:12:14,129 OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TSIPRAS AND 1196 01:12:14,196 --> 01:12:16,532 SEND OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS 1197 01:12:16,598 --> 01:12:19,401 CONNECT ABOUT THE ALL OF US RESEARCH FOR US TO PARTNER AND 1198 01:12:19,468 --> 01:12:21,804 SEND OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS 1199 01:12:21,870 --> 01:12:23,472 CONNECT ABOUT THE ALL OF US RESEARCH 1200 01:12:23,539 --> 01:12:28,477 STUDY 1201 01:12:28,544 --> 01:12:34,483 SO, I SEE A QUESTION FOR, DR. THROWER. FROM MARIANNE ELLEN. 1202 01:12:34,550 --> 01:12:41,490 DO YOU WANT TO UNMUTE AND ASK IT YOURSELF OR DO YOU WANT ME TO 1203 01:12:41,557 --> 01:12:42,491 READ IT? 1204 01:12:42,558 --> 01:12:44,493 SURE. I LOVED, HER SUGGESTION THAT MAYBE WE NEED TO BE TALKING 1205 01:12:44,560 --> 01:12:45,494 TO THE COMMUNITY MORE. 1206 01:12:45,561 --> 01:12:46,462 OKAY. 1207 01:12:46,528 --> 01:12:49,965 I WAS JUST WONDERING YOU MENTIONED OBESITY TO BEING ONE 1208 01:12:50,032 --> 01:12:54,136 OF THE THINGS YOU'RE CONCERNED ABOUT IF YOU FEEL LIKE IT'S VERY 1209 01:12:54,203 --> 01:12:57,639 SIMILAR IN THE DOWN SYNDROME COMMUNITY TO THOSE OUTSIDE OF 1210 01:12:57,706 --> 01:13:01,477 THE DOWNTOWN COMMUNITY OR DO YOU FEEL LIKE IT'S REALLY DIFFERENT? 1211 01:13:01,543 --> 01:13:06,081 IT FEELS DIFFERENT TO ME. AGAIN, THAT WOULD BE WONDERFUL TO KNOW 1212 01:13:06,148 --> 01:13:10,319 THOUGH IF, HOW IS IT IN THE NEUROTYPICAL COMMUNITY AND THE 1213 01:13:10,385 --> 01:13:11,487 DOWN SYNDROME COMMUNITY. 1214 01:13:11,553 --> 01:13:16,158 I JUST OFTEN WONDER, AND THIS IS FROM HEARING OTHER PARENTS TALK. 1215 01:13:16,225 --> 01:13:18,494 ABOUT THEIR CHILDREN WITH DOWN SYNDROME. 1216 01:13:18,560 --> 01:13:21,830 IS THERE SOMETHING THAT'S NOT LETTING THEM KNOW THAT THEY'RE 1217 01:13:21,897 --> 01:13:25,467 FULL? BUT THEN ALSO, SO IT'S NOT JUST THAT, BUT IT'S. 1218 01:13:25,534 --> 01:13:29,738 PERHAPS BECAUSE A LOT OF PEOPLE WITH DOWN SYNDROME MAY HAVE 1219 01:13:29,805 --> 01:13:32,474 MOBILITY ISSUES. OR LOW MUSCLE TONE, RIGHT? 1220 01:13:32,541 --> 01:13:36,245 I KNOW MY DAUGHTER HAS HAD A LOT OF ISSUES. SHE ACTUALLY JUST HAD 1221 01:13:36,311 --> 01:13:39,481 SURGERY ON HER FOOT IN MARCH AND SHE'LL DO THE LEFT FOOT. 1222 01:13:39,548 --> 01:13:43,652 NEXT YEAR SO THAT PREVENTS HER FROM BEING AS ACTIVE FROM 1223 01:13:43,719 --> 01:13:47,823 WALKING AS LONG SO EVEN IF THEY'RE EATING THE SAME AMOUNT 1224 01:13:47,890 --> 01:13:50,492 BECAUSE OF THE EXERCISE. MAYBE THAT'S IT. 1225 01:13:50,559 --> 01:14:01,537 I DON'T KNOW. BUT IF YOU ALL CAN RESEARCH THAT, A LOT OF US WOULD 1226 01:14:01,603 --> 01:14:04,473 BE VERY, VERY APPRECIATIVE. 1227 01:14:04,540 --> 01:14:04,973 I'D LIKE TO JUST ADD THAT YOU KNOW OBESITY IS YOU KNOW 1228 01:14:05,040 --> 01:14:05,474 CRITICAL ISSUE FOR MANY OF OUR CHILDREN. 1229 01:14:05,541 --> 01:14:10,512 YOU KNOW A CRITICAL ISSUE FOR MANY OF OUR CHILDREN. YOU KNOW 1230 01:14:10,579 --> 01:14:15,551 ALREADY LIKE 30% OF OUR HISPANIC CHILDREN BETWEEN THE AGES OF 2 1231 01:14:15,617 --> 01:14:18,487 AND 19 ARE ALREADY OVERWEIGHT OR OBESE. 1232 01:14:18,554 --> 01:14:23,492 SO, SOMETHING THAT WE COULD CERTAINLY. ADDRESS AS A NATIONAL 1233 01:14:23,559 --> 01:14:29,965 ISSUE. YOU KNOW, IT HAS BEEN LOOKED AT, BUT THEN TO LOOK AT 1234 01:14:30,032 --> 01:14:34,469 SPECIFIC AREAS FOR, DOWN TO CHILDREN WITH DOWN SYNDROME. 1235 01:14:34,536 --> 01:14:38,473 THANK YOU, DR. RAMIREZ. I HAD A QUESTION FOR DR. WATSON. 1236 01:14:38,540 --> 01:14:43,178 I WAS REALLY, INTRIGUED TO SEE YOUR MOBILE ENGAGEMENT ASSET. 1237 01:14:43,245 --> 01:14:46,481 CAN YOU ELABORATE A LITTLE BIT ABOUT. 1238 01:14:46,548 --> 01:14:50,485 WHAT IT ENTAILS AND WHAT RESOURCES ARE PART OF THIS 1239 01:14:50,552 --> 01:14:51,486 ASSET. 1240 01:14:51,553 --> 01:14:56,058 THANK YOU SO MUCH FOR THAT QUESTION, DR. BYRNE. WE WORK 1241 01:14:56,124 --> 01:15:00,229 WITH, WITH MINTAGE MARKETING COMMUNITY TO HELP US DEVELOP OUR 1242 01:15:00,295 --> 01:15:01,463 MOBILE ENGAGEMENT ASSET. 1243 01:15:01,530 --> 01:15:04,900 AND WE ALSO WORK WITH AMERICAN ASSOCIATION HEALTH AND 1244 01:15:04,967 --> 01:15:07,970 DISABILITY TO THINK ABOUT ACCESSIBILITY FOR OUR MOBILE 1245 01:15:08,036 --> 01:15:12,174 ENGAGEMENT ASSET AND IT'S REALLY OUR WAY OF ADDRESSING THIS ISSUE 1246 01:15:12,241 --> 01:15:14,476 OF ACCESS FOR ENGAGING IN RESEARCH. 1247 01:15:14,543 --> 01:15:18,714 AND AS DR. THORA MENTIONED, SO OFTEN WE EXPECT FOR FAMILIES AND 1248 01:15:18,780 --> 01:15:20,482 PARENTS TO COME TO US. 1249 01:15:20,549 --> 01:15:24,386 BUT WHAT WE'VE TRIED TO DO IS THINK ABOUT HOW CAN WE GO TO 1250 01:15:24,453 --> 01:15:26,488 WHERE COMMUNITIES AND FAMILIES ARE THINKING ABOUT RURAL 1251 01:15:26,555 --> 01:15:27,489 COMMUNITIES. 1252 01:15:27,556 --> 01:15:32,394 ALSO IS TRYING TO ADDRESS THAT WE CALL IT A RESEARCH GAP 1253 01:15:32,461 --> 01:15:35,697 BECAUSE MOST UNFORTUNATELY MOST RESEARCH STUDIES HAPPEN IN 1254 01:15:35,764 --> 01:15:39,768 ACADEMIC MEDICAL CENTERS THAT OFTEN ARE NOT IN THE GEOGRAPHIC 1255 01:15:39,835 --> 01:15:43,472 LOCATIONS WHERE A LOT OF HEALTH DISPARITIES TAKE PLACE. 1256 01:15:43,538 --> 01:15:45,407 SO WHAT OUR MOBILE ENGAGEMENT ASSET DOES, IT'S A LARGE MOBILE 1257 01:15:45,474 --> 01:15:47,342 VAN THAT SOME OF THEM ARE EQUIPPED FOR PEOPLE LIVING WITH 1258 01:15:47,409 --> 01:15:49,478 DISABILITIES AND OTHER THINGS TO ALLOW US TO TAKE THE MESSAGE TO 1259 01:15:49,544 --> 01:15:50,479 THE COMMUNITY. 1260 01:15:50,545 --> 01:15:57,286 IT'S NOT JUST EVEN TO ALLOW US TO TAKE THE MESSAGE TO THE 1261 01:15:57,352 --> 01:16:01,490 COMMUNITY. IT'S NOT JUST EVEN ALL ABOUT ENROLLMENT. 1262 01:16:01,556 --> 01:16:04,226 IT'S ALSO ABOUT, IT'S NOT JUST EVEN ALL ABOUT ENROLLMENT. IT'S 1263 01:16:04,293 --> 01:16:06,461 ALSO ABOUT, AWARENESS OF THE IMPORTANCE OF GENOMIC STUDIES. 1264 01:16:06,528 --> 01:16:11,133 IT'S ALSO ABOUT AWARENESS OF THE IMPORTANCE OF GENOMIC STUDIES. 1265 01:16:11,199 --> 01:16:13,468 GETTING PEOPLE FAMILIAR WITH IT. 1266 01:16:13,535 --> 01:16:16,471 SOMETIMES IF YOU'RE IN THE CLINIC SETTING AND THE 1267 01:16:16,538 --> 01:16:19,474 IMPORTANCE OF GENOMIC STUDIES. GETTING PEOPLE FAMILIAR WITH IT. 1268 01:16:19,541 --> 01:16:21,376 SOMETIMES IF YOU'RE IN THE CLINIC SETTING, GETTING PEOPLE 1269 01:16:21,443 --> 01:16:23,679 FAMILIAR WITH IT. SOMETIMES IF YOU'RE IN THE CLINIC SETTING AND 1270 01:16:23,745 --> 01:16:25,580 THAT'S THE FIRST TIME YOU APPROACH ABOUT PARTICIPATING IN 1271 01:16:25,647 --> 01:16:27,482 A TRIAL, THAT MAY NOT BE THE RIGHT TIME. 1272 01:16:27,549 --> 01:16:29,518 BUT IF YOU CAN GO TO THE MOBILE ENGAGEMENT ASSET, LEARN ABOUT 1273 01:16:29,584 --> 01:16:31,053 THE IMPORTANCE OF GENOMIC RESEARCH, LEARN WHAT A CONSENT 1274 01:16:31,119 --> 01:16:32,754 PROCESS, THE CONSENT PROCESS LOOKS LIKE AND WHAT WE'VE TAKEN 1275 01:16:32,821 --> 01:16:34,289 FOR DATA COLLECTION THAT MAY ENGAGE COMMUNITY MEMBERS TO 1276 01:16:34,356 --> 01:16:35,490 BEGIN TO BUILD THAT RELATIONSHIP TO PARTICIPATE. 1277 01:16:35,557 --> 01:16:36,491 AND I CAN PROVIDE MORE INFORMATION FOR THE PROGRAM TO 1278 01:16:36,558 --> 01:16:37,492 SEND THAT OUT TO YOUR COMMUNITY ABOUT WHERE AND WE KEEP A LIST 1279 01:16:37,559 --> 01:16:38,493 OF WHERE THE MOBILE ENGAGEMENT ASSET IS GONNA BE THROUGHOUT THE 1280 01:16:38,560 --> 01:16:39,494 COUNTRY 1281 01:16:39,561 --> 01:16:42,364 THAT WOULD BE FABULOUS. THANK YOU SO MUCH. SO I SEE THAT DR. 1282 01:16:42,431 --> 01:16:43,465 ESPINOSA HAS HIS HAND UP. 1283 01:16:43,532 --> 01:16:49,471 PLEASE ON NEWTON ASK YOUR QUESTION. 1284 01:16:49,538 --> 01:16:54,476 HI, SUZETTE. I'VE BEEN ABIDING MY TONGUE. HEARING LISA TALK 1285 01:16:54,543 --> 01:16:57,479 ABOUT THE IMPORTANCE OF MORE RESEARCH. 1286 01:16:57,546 --> 01:16:59,481 ABOUT OBESITY AND APPETITE CONTROLLING THAT SYNDROME. LISHA 1287 01:16:59,548 --> 01:17:00,482 IS HAPPENING. OKAY. 1288 01:17:00,549 --> 01:17:07,422 WE'RE AWARE OF THE NEED FOR MORE RESEARCH ON THIS. THERE ARE MANY 1289 01:17:07,489 --> 01:17:12,194 LARGE COVER STUDIES NOW OF INDIVIDUALS WITHIN SYNDROME THAT 1290 01:17:12,260 --> 01:17:16,465 ARE TAKING, BODY MAX INDEX MEASUREMENTS AND TRACKING. 1291 01:17:16,531 --> 01:17:19,267 YOU KNOW, THE OVERWEIGHT PHENOTYPE TO OTHER. 1292 01:17:19,334 --> 01:17:23,271 CHARACTERISTICS BOTH IN TERMS OF COHERENT CONDITIONS AND ALSO THE 1293 01:17:23,338 --> 01:17:26,875 THE PHYSIOLOGY OF PEOPLE WITHIN SYNDROME, BUT I'M REALLY 1294 01:17:26,942 --> 01:17:32,080 FASCINATED BY THE FACT THAT YOU AND OTHERS SUPPORT A NOTION OF A 1295 01:17:32,147 --> 01:17:34,483 LOSS OF APPETITE CONTROLLING THOSE SYNDROME. 1296 01:17:34,549 --> 01:17:38,653 WHICH COULD BE TIED IN OUR UNDERSTANDING TO THE SLEEP 1297 01:17:38,720 --> 01:17:43,291 DISTURBANCES. WHEN YOU HAVE, WHEN YOU HAVE, WHEN YOU ARE NOT 1298 01:17:43,358 --> 01:17:47,462 A SLEEPING WELL, THE MECHANISMS THAT HELP YOU CONTROL APPETITE. 1299 01:17:47,529 --> 01:17:52,601 THE HORMONE LEPTIN. EXAMPLE, BECOME THIS REGULATED. SO 1300 01:17:52,667 --> 01:17:56,471 EVERYTHING IS CONNECTED. NORMALIZING IS LEAP. 1301 01:17:56,538 --> 01:17:59,574 DOING THE I MAY HELP WITHOUT APPETITE CONTROL DURING THE DAY. 1302 01:17:59,641 --> 01:18:02,944 I LOOK FORWARD TO SHARING MORE OF THIS RESEARCH WITH YOU AND 1303 01:18:03,011 --> 01:18:05,480 THE REST OF THE COMMUNITY IN THE YEARS AHEAD. 1304 01:18:05,547 --> 01:18:12,487 THANK YOU FOR YOUR WORK. 1305 01:18:12,554 --> 01:18:17,859 SO I HAVE A QUESTION FOR DR. RAMIREZ. SO YOU MENTIONED THAT, 1306 01:18:17,926 --> 01:18:21,463 YOU CONDUCTED SEVERAL FOCUS GROUPS TO UNDERSTAND BARRIERS. 1307 01:18:21,530 --> 01:18:27,069 AND I KNOW YOU TOUCHED UPON A FEW OF THEM. WOULD YOU LIKE TO 1308 01:18:27,135 --> 01:18:29,871 ELABORATE, ESPECIALLY IN THE LATINO COMMUNITY AND 1309 01:18:29,938 --> 01:18:34,276 PARTICIPATING IN OUR RESEARCH AND AND, ONE COMMENT IS THAT WE, 1310 01:18:34,342 --> 01:18:37,879 THE REGISTRY THAT WE HAVE, DS CONNECT, ALTHOUGH IT'S 1311 01:18:37,946 --> 01:18:41,483 TRANSLATED IN SPANISH, IT'S BEEN HARD TO GET FAMILIES 1312 01:18:41,550 --> 01:18:50,325 TO, YOU KNOW, BE PART OF THAT RESOURCE AND OUT OF, ABOUT 5,400 1313 01:18:50,392 --> 01:18:56,465 FAMILIES, LESS THAN 50 FAMILIES ARE ON THE REGISTRY. 1314 01:18:56,531 --> 01:19:01,369 WOULD REALLY LIKE TO LEARN SOME OF THE BARRIERS THAT YOU HAVE. 1315 01:19:01,436 --> 01:19:05,474 DISCOVERED AS PART OF YOUR FOCUS GROUP IN YOUR COMMUNITY. 1316 01:19:05,540 --> 01:19:09,811 WELL, YOU KNOW, PART OF IT WAS THE EMPHASIS THAT WE SAID ON 1317 01:19:09,878 --> 01:19:12,481 EDUCATION BECAUSE OFTENTIMES OUR COMMUNITIES FEEL THAT CLINICAL 1318 01:19:12,547 --> 01:19:16,485 TRIALS ARE PARTICIPATING IN ANY KIND OF A STUDY IS THAT THEY'RE 1319 01:19:16,551 --> 01:19:18,487 BEING USED AS A GUINEA PIG. 1320 01:19:18,553 --> 01:19:23,125 YOU KNOW, AND THAT IS VERY PREVALENT IN THEIR MINDS AND 1321 01:19:23,191 --> 01:19:27,796 JUST EVEN THE WORD CLINICAL TRIAL. TRIAL IN ENGLISH IS LIKE 1322 01:19:27,863 --> 01:19:33,301 YOU'RE GOING TO COURT, YOU KNOW, YOU'RE GOING TO, SO WE TRY TO 1323 01:19:33,368 --> 01:19:37,506 USE MORE CLINICAL STUDIES, YOU KNOW, WHERE WE'RE WANTING TO 1324 01:19:37,572 --> 01:19:40,475 LEARN MORE THAT'S BOTH BENEFICIAL AND IS 1325 01:19:40,542 --> 01:19:43,912 IMPORTANT. WE ALSO STRESSED THE NEED FOR BIDIRECTIONAL 1326 01:19:43,979 --> 01:19:46,481 COMMUNICATION. THERE WAS, YOU KNOW, DR. 1327 01:19:46,548 --> 01:19:48,884 THROWER WAS MENTIONING THE NEED TO SUMMARIZE SOME OF THE THINGS 1328 01:19:48,950 --> 01:19:51,920 THAT WE LEARN IF YOU KNOW JUST AS MUCH AS WE WE ASK OUR 1329 01:19:51,987 --> 01:19:54,322 COMMUNITY FOR INPUT WE NEED TO SHARE BACK WHAT WE'VE LEARNED 1330 01:19:54,389 --> 01:19:56,491 AND A SIMPLISTIC WAY IN THAT WHOLE NEED FOR BIDIRECTIONAL 1331 01:19:56,558 --> 01:19:57,492 COMMUNICATIONS IS EXTREMELY IMPORTANT. 1332 01:19:57,559 --> 01:20:04,132 TO CREATE THE TRUST THAT WE'RE TRYING TO BUILD NOT ONLY WITH 1333 01:20:04,199 --> 01:20:10,772 OUR PARTICIPANTS BUT TO BE ABLE TO GROW THAT BECAUSE IF THEY 1334 01:20:10,839 --> 01:20:15,744 FEEL COMFORTABLE THEN THEY'RE WILLING TO SHARE WHAT WE'RE 1335 01:20:15,810 --> 01:20:21,283 SHARING WITH THEM WITH OTHERS AND YOUR LEARNING COMMUNITY YOU 1336 01:20:21,349 --> 01:20:23,485 KNOW BEGINS TO GROW. 1337 01:20:23,552 --> 01:20:24,486 THANK YOU. 1338 01:20:24,553 --> 01:20:26,254 SO THOSE ARE JUST A FEW OF THE THINGS THAT WE FELT WERE 1339 01:20:26,321 --> 01:20:27,322 EXTREMELY IMPORTANT. AND THEN WE'RE PUTTING TOGETHER SOMETHING 1340 01:20:27,389 --> 01:20:28,490 CALLED DESIGN STUDIOS WORKING WITH OUR RESEARCHERS AGAIN GOING 1341 01:20:28,557 --> 01:20:29,491 BACK TO WHAT DR. 1342 01:20:29,558 --> 01:20:33,195 THROWER WAS SAYING, YOU KNOW, OUR RESEARCHERS NEED TO HEAR 1343 01:20:33,261 --> 01:20:36,464 WHAT THE COMMUNITY THINKS BEFORE THEY FINALIZE THEIR RESEARCH 1344 01:20:36,531 --> 01:20:37,465 DESIGN. 1345 01:20:37,532 --> 01:20:38,466 AND SO WE'RE JUST NOW BEGINNING TO EXPLORE THAT. I KNOW IT'S 1346 01:20:38,533 --> 01:20:39,467 BEEN USED IN OTHER PLACES BUT NOT NECESSARILY WITHIN THE 1347 01:20:39,534 --> 01:20:40,468 LATINO COMMUNITY. 1348 01:20:40,535 --> 01:20:50,478 SO WE'RE LOOKING FORWARD TO THAT AND SEE WHAT WE LEARN. 1349 01:20:50,545 --> 01:20:54,950 YES, EXCELLENT. AND AS INCLUDE ALSO HAS A COMMUNITY BASED 1350 01:20:55,016 --> 01:20:58,486 PARTICIPATORY RESEARCH INITIATIVE ON THE ROAD. SO AS 1351 01:20:58,553 --> 01:20:59,487 DR. 1352 01:20:59,554 --> 01:21:04,593 WATSON POINTED OUT AS WELL AS YOURSELF AND HEARING FROM DR. 1353 01:21:04,659 --> 01:21:06,461 THR THAT CBPR APPROACHES. 1354 01:21:06,528 --> 01:21:12,033 TO DESIGNING STUDIES IS SPENT. AND VERY IMPORTANT TO ENGAGE. 1355 01:21:12,100 --> 01:21:16,471 DIVORCE PERSPECTIVES. SO, ARE THERE ANY MORE QUESTIONS? 1356 01:21:16,538 --> 01:21:24,479 WE ARE JUST AT 2 28 AND BEING RESPECTFUL OF EVERYONE'S TIME. 1357 01:21:24,546 --> 01:21:29,150 FINAL CALL FOR ANY QUESTIONS. LINDA, WERE THERE ANY QUESTIONS 1358 01:21:29,217 --> 01:21:31,486 IN THE SPANISH INTERPRETATION ROOM? 1359 01:21:31,553 --> 01:21:37,525 LET ME JUST CHECK REAL QUICK. WILL THE INTERPRETERS LET US 1360 01:21:37,592 --> 01:21:42,464 KNOW IF THERE ARE ANY QUESTIONS PLEASE IN SPANISH? 1361 01:21:42,530 --> 01:21:47,469 CAN I MAKE ONE ANNOUNCEMENT ABOUT THE INCLUDE PROJECT? 1362 01:21:47,535 --> 01:21:49,471 SURE, MELISSA, GO AHEAD. 1363 01:21:49,537 --> 01:21:53,808 SO I JUST WANT TO LET EVERYONE ON THIS CALL KNOW THAT THE 1364 01:21:53,875 --> 01:21:57,479 INCLUDE PROJECT WHICH IS JUST BEEN IN EXISTENCE FOR 5 YEARS 1365 01:21:57,545 --> 01:22:01,850 AND WE ARE PLANNING FOR OUR NEXT CYCLE TO HAVE A LARGE COHORT 1366 01:22:01,916 --> 01:22:05,153 STUDY TO FOLLOW PEOPLE ACROSS THE LIFESPAN WITH DOWN SYNDROME 1367 01:22:05,220 --> 01:22:08,490 LONGITUDINALLY AND LEARN MORE ABOUT WHAT IT'S LIKE TO LIVE 1368 01:22:08,556 --> 01:22:09,491 WITH 1369 01:22:09,557 --> 01:22:12,394 DOWN SYNDROME AND IT'S ABSOLUTELY ESSENTIAL THAT WE 1370 01:22:12,460 --> 01:22:16,364 HAVE DIVERSE REPRESENTATION INTO THE STUDY. SO WE HOPE THAT AS 1371 01:22:16,431 --> 01:22:21,069 YOU HEAR MORE ABOUT THIS PROGRAM AND AS IT LAUNCHES IN THE NEXT 1372 01:22:21,136 --> 01:22:24,306 COUPLE YEARS THAT YOU WILL CONSIDER PARTICIPATING AND BEING 1373 01:22:24,372 --> 01:22:26,474 A PART OF THIS COHORT PROJECT. 1374 01:22:26,541 --> 01:22:30,478 THANK YOU. 1375 01:22:30,545 --> 01:22:35,483 LINDA, WERE THERE ANY MORE QUESTIONS IN THE SPANISH? 1376 01:22:35,550 --> 01:22:36,484 IF. 1377 01:22:36,551 --> 01:22:41,489 LET ME CHECK REAL QUICK. I LOOK AT THE CENTRAL ESTABLISHED, 1378 01:22:41,556 --> 01:22:42,490 SPANNER. 1379 01:22:42,557 --> 01:22:47,062 AND IF WE DIDN'T GET TO YOUR QUESTION, PLEASE SEND IT TO US. 1380 01:22:47,128 --> 01:22:51,666 WE WILL BE ABLE TO RESPOND TO YOU A RECORDING OF THIS WEBINAR 1381 01:22:51,733 --> 01:22:54,469 WILL BE POSTED PUBLICLY ON THE INCLUDE WEBSITE. 1382 01:22:54,536 --> 01:22:59,708 ONCE AGAIN, THE INCLUDE TEAM WOULD LIKE TO THANK. ALL THE 1383 01:22:59,774 --> 01:23:04,479 SPEAKERS, ESPECIALLY, JAYA FOR MISSING HER CAMP FOR OUR SERIES. 1384 01:23:04,546 --> 01:23:10,852 I WOULD ALSO LIKE TO. THANK THE INCLUDE DI. WORKING GROUP AND 1385 01:23:10,919 --> 01:23:13,488 ALL OF THEIR RIGHT STAFF. 1386 01:23:13,555 --> 01:23:16,124 THANK YOU ALL AND THANK YOU AMANDA. FOR YOUR HELP PUTTING 1387 01:23:16,191 --> 01:23:18,493 THIS WEBINAR SERIES. HAVE A GOOD REST OF YOUR DAY. 1388 01:23:18,560 THANK YOU