WELCOME EVERYONE. INCLUDING ATTENDEES FROM LATIN AMERICA,
CENTRAL AMERICA, AS WELL AS KENYA TO OUR INAUGURAL INCLUDE
DIVERSITY, EQUITY, INCLUSION AND ACCESSIBILITY SEMINAR SERIES.
OUR FIRST WEBINAR TOPIC IS THE VALUE OF DIVERSE PERSPECTIVES IN
DOWN SYNDROME RESEARCH. I AM DR.
SEJATHA BOLTON, A PROGRAM DIRECTOR AT THE UNICE KENNEDY
SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN
DEVELOPMENT.
AND LEADING TODAY'S SEMINAR SERIES ALONG WITH MISS LINDA
GARCIA AND MISS MARJORIE VANDY.
SO WE HAVE, 4 GREAT
SPEAKERS LINED UP FOR TODAY'S WEBINAR AND THE DETAILED BIOS,
FOR THE SPEAKERS ARE ON THE REGISTRATION PAGE.
SO OUR FIRST SPEAKER IS DR. KAREEM, WATSON, WHO IS THE CHIEF
ENGAGEMENT OFFICER OF THE NATIONAL INSTITUTES OF HEALTH,
ALL OF US RESEARCH PROGRAM.
DR. WATSON LEADS THE ALL OF US RESEARCH PROGRAMS EFFORTS TO
FOSTER RELATIONSHIPS WITH PARTICIPANTS, COMMUNITIES,
RESEARCHERS AND PROVIDERS ACROSS THE US TO HELP BUILD ONE OF THE
LARGEST, MOST DIVERSE HEALTH DATABASE OF ITS KIND.
TO STUDY HEALTH AND INNESS. OUR SECOND SPEAKER, WE WILL HEAR
FROM DR. AMELIE RAMIREZ WHO IS PROFESSOR AND CHAIR OF THE
DEPARTMENT OF POPULATION HEALTH SCIENCES.
AT UT HEALTH SAN ANTONIO
THANK YOU ALL SO MUCH. IT'S A GREAT OPPORTUNITY TO BE HERE
TODAY. AS NOTED, MY NAME IS DR.
KAREEM WATSON. I AM THE CHIEF ENGAGEMENT OFFICER FOR THE
NATIONAL INSTITUTES OF HEALTH. ALL OF US RESEARCH PROGRAM AND
I'M HERE TODAY TO TALK TO YOU A LITTLE BIT ABOUT OUR RESEARCH
PROGRAM, THE ALL OF US RESEARCH PROGRAM, AND ENGAGING
UNDERREPRESENTED COMMUNITIES IN BIOMEDICAL RESEARCH THROUGH OUR
PROGRAM.
NEXT SLIDE. WHAT I HOPE TO ACCOMPLISH TODAY IS TO DESCRIBE,
TO BRIEFLY DESCRIBE THE OLIVER'S RESEARCH PROGRAM TO YOU AND ITS
RESOURCES TO ENGAGE POPULATIONS WHO HAVE BEEN HISTORICALLY
UNDERREPRESENTED IN BIOMEDICAL RESEARCH AND ALSO TO DISCUSS HOW
ALL OF US HAS BEEN VERY INTENTIONAL IN ADDRESSING
DIVERSITY, EQUITY AND INCLUSION IN OUR IN OUR
TRIAL IN OUR PROGRAM AND ALSO THE IMPORTANCE OF
INTERSECTIONALITY. AND LASTLY, WANT TO HIGHLIGHT HOW ALL OF US
HAS BEEN ABLE TO ACHIEVE THE RESEARCHER WORK THAT WE'RE DOING
TO INCLUDE MORE DATA FROM DIVERSE COMMUNITIES.
NEXT SLIDE. SO I WANT TO BRIEFLY START BY TELLING YOU WHAT IS THE
ALL OF US RESEARCH PROGRAM. SO IN 2015 THE NATIONAL INSTITUTE
OF HEALTH FORMED THE PRECISION MEDICINE INITIATIVE WORKING
GROUP.
OF THE ADVISORY COMMITTEE TO THE DIRECTOR IN MARCH OF 2015. THE
GROUP CONCLUDED THAT IT'S WORKING SEPTEMBER 2015 WITH A
DETAILED REPORT.
THE REPORT PROVIDED A FRAMEWORK FOR SETTING UP THE ALL OF US
RESEARCH PROGRAM. THE OFFICE RESEARCH PROGRAM IS INVITING 1
MILLION MORE PEOPLE ACROSS THE US TO HELP BUILD ONE OF THE MOST
DIVERSE HEALTH DATABASES IN HISTORY.
WE WELCOME PARTICIPANTS FROM ALL BACKGROUNDS. RESEARCHERS WILL
USE THE DATA TO LEARN HOW OUR BIOLOGY, LIFESTYLE, AND
ENVIRONMENT AFFECT HEALTH.
THIS MAY ONE DAY HELP THEM FIND WAYS TO TREAT AND PREVENT
DISEASE. ONE OF THE THINGS THAT WE LIKE TO SAY IN THE OLIVEREST
RESEARCH PROGRAM IS THAT WHAT WE WANT TO DO IS ACCELERATE HEALTH.
RESEARCH AND MEDICAL BREAKTHROUGHS ENABLING
INDIVIDUALIZED PREVENTION, TREATMENT, AND CARE FOR ALL OF
US.
REALLY MOVING AWAY FROM THIS CONCEPT THAT A ONE SIZE FITS ALL
APPROACH WORKS IN HEALTH DISPARITIES RESEARCH. AND WE
WANT TO DO THIS BY NURTURING PARTNERSHIPS.
WE ALSO WANT TO MAKE SURE WE DELIVER ONE OF THE LARGEST AND
RICHEST AND DIVERSE DATA SETS AND THEN WE WANT TO CATALYZE AN
ECOSYSTEM OF COMMUNITY RESEARCHERS AND FUNDERS WHO MAKE
ALL OF US AN INDISPENSABLE PART OF HEALTH RESEARCH.
NEXT SLIDE.
IN ADDITION TO ALL OF US HAVING INTENTIONALITY AROUND THE
DIVERSITY OF OUR PARTICIPANTS AND HOW WE ENGAGE OUR PARTNERS,
WE ALSO UNDERSTAND THAT IN ORDER TO REALLY TO BE ABLE TO ASK
QUESTIONS ABOUT INTERSECTIONALITY OF RESEARCH
ACROSS THE LIFE COURSE THAT WE MUST HAVE INTENTIONALLY ON
THINKING ABOUT WHAT TYPE OF INFORMATION WILL WE COLLECT.
SO TODAY WE ARE PRIORITIZING SURVEY RESPONSES. ALSO ENGAGING
ELECTRONIC HEALTH RECORDS, WHOLE GENOME SEQUENCES AND STRUCTURAL
VARIANTS, BUT ALSO LOOKING AT PHYSICAL MEASUREMENTS.
AND WHAT THIS WILL ALLOW US TO DO IS BEING ABLE TO HAVE A
ONE-STOP SHOP, ONE PLACE WHERE YOU HAVE INFORMATION ON SURVEYS.
THESE SURVEYS CAN INCLUDE DATA ON SOCIAL DETERMINANTS OF
HEALTH. WE'LL ALSO HAVE INFORMATION ABOUT ELECTRONIC
HEALTH RECORDS.
THIS ELECTRONIC HEALTH RECORD DATA WILL BE VERY IMPORTANT
BECAUSE IT WOULD ALLOW US TO SEE HOW PEOPLE MAY GROW AND CHANGE
OVER THE LIFE COURSE.
BUT THEN ALSO COLLECTING BIOLOGICAL INFORMATION FOR
PHYSICAL MEASUREMENTS WHICH WILL ALLOW US TO REALLY THINK ABOUT
HOW CAN WE LOOK AT THIS INTERSECTIONALITY ABOUT BIOLOGY.
LIFESTYLE AND ENVIRONMENT. AND AS OF APRIL, 2,023, THE ALL OF
US RESEARCHER WORKBENCH CONTAINS THE LARGEST SET OF WHOLE GENOME
SEQUENCES WIDELY AVAILABLE FOR RESEARCH.
NEXT SLIDE.
AND ANOTHER THING THAT WE'RE COMMITTED TO IN OUR PROGRAM IS
ADDRESSING THE FACT THAT HISTORICALLY WHEN YOU LOOK AT
THE SLIDE, THE PIE GRAPH ON THE RIGHT, YOU LOOK AT OTHER GENOMIC
STUDIES, THEY HAVE BEEN OVER 78% REPRESENTED BY EUROPEAN OR WHITE
POPULATIONS AND ONLY ABOUT 2% OF THOSE POPULATIONS HAVE BEEN OF
AFRICAN
DESCENT, LESS THAN 1% OF THOSE POPULATION HAVE BEEN OF HISPANIC
OR LATINO DESCENT AND OTHER MINORITIES HAVE REPRESENTED LESS
THAN POINT 5%.
AND WHAT WE KNOW THAT THIS DOES IN GENOMIC RESEARCH AND GENETIC
RESEARCH AND RESEARCH IN GENERAL IS THAT IT LEADS TO A LACK OF
GENERALIZABILITY FOR THE FINDINGS THAT WE HAVE.
AND IT DOES NOT TAKE INTO ACCOUNT THE RICH DIVERSITY THAT
WE SEE IN THE US AND EVEN MORE IMPORTANTLY THE RICH DIVERSITY
THAT WE HAVE ACROSS THE WORLD.
BUT IN THE ALL OF US RESEARCH PROGRAM, WE'VE BEEN ABLE TO
ADVANCE THIS WORK AND INCLUSIVE DIVERSITY IN OUR PROGRAM THROUGH
A LARGE EFFORTS OF COMMUNITY ENGAGEMENT THAT I'LL TALK ABOUT
LATER.
OUR PROGRAM TRULY REFLECTS WHAT YOU'LL SEE AS A DIVERSE MAKEUP
OF THE UNITED STATES, FOR EXAMPLE.
WE HAVE ABOUT 51% OF OUR PARTICIPANTS AT SELF-IDENTIFIED
AS WHITE OR EUROPEAN ANCESTRY, BUT 17.9% OF OUR PARTICIPANTS
SELF IDENTIFY AS BLACK, AFRICAN AMERICAN OF AFRICAN DESCENT.
SO 16% OF OUR PARTICIPANTS SELF IDENTIFY AS BEING HISPANIC,
LATINO OR OR SPANISH, AND 3.1% OF OUR PARTICIPANTS
SELF-IDENTIFY AS BEING ASIAN AMERICAN.
AND ABOUT 6.8% OF OUR PARTICIPANTS SELF IDENTIFY AS
HAVING MORE THAN ONE RACE. WE EVEN COLLECT INFORMATION ON
MIDDLE EASTERN AND NORTHERN AFRICA.
NATIVE HAWAIIAN PACIFIC ISLANDER ABOUT 2.8%. AND TO DATE, WE HAVE
BEEN ABLE TO ENGAGE OVER 651,000 ALL OF US PARTICIPANTS AND OVER
453,000 OF OUR PARTICIPANTS HAVE COMPLETED ALL INITIAL STEPS WITH
OUR COMMITMENT TO HAVING OVER 75% OF OUR PARTICIPANTS BE WHAT
WE CALL UNDERREPRESENTED
IN BIOMEDICAL RESEARCH. YOU HEAR ME USE THAT TERM A LOT TODAY.
AND SOMETIMES WE CALL THAT UVR.
BUT THOSE EFFORTS FOR OUR INTENTIONAL INCLUSION OF DIVERSE
POPULATIONS HAS COME THROUGH INTENTIONAL COMMUNITY
ENGAGEMENT. NEXT SLIDE.
SO THIS IS AN EXAMPLE OF WHAT WE DO AND HOPEFULLY PART OF THE
DISCUSSION WE CAN HAVE IS HOW WE CAN PARTNER WITH PROGRAMS LIKE
INCLUDE AND OTHERS TO REALLY EXPAND AND GROW THE ENGAGEMENT
ECOSYSTEM THAT WE UTILIZE.
SO WITHIN THE ALL OF US RESEARCH PROGRAM WE'VE ADOPTED WHAT WE
CALL AN ENGAGEMENT ECOSYSTEM.
THIS ENGAGEMENT ECOSYSTEM PRIORITIZES BUILDING
RELATIONSHIPS. IT ALSO PRIORITIZES ADVANCING THE
SCIENCE OF ENGAGEMENT AND THEN THINKING ABOUT POPULATIONS THAT
WE WILL ENGAGE TO KEEP IN OUR PROGRAM AND THEN ENGAGING TO
EQUIP RESEARCHERS AND THEN CREATING A RETURN OF VALUE
CYCLE.
I ALSO KNOW THAT ONE OF THE THINGS THAT THE INCLUDE PROGRAM
WANTS TO PRIORITIZE IS TO ENGAGE AND TRAIN AND ADVANCE THE GROUP
OF RESEARCH THAT ARE ABLE TO DO THIS WORK.
AND WE DO THIS WORK BUILT ON PRINCIPLES OF EQUITABLE
ENGAGEMENT. PRINCIPLES OF COMMUNITY BASED PARTICIPATORY
RESEARCH. AND ALSO PRINCIPLES OF PARTICIPANTS AS PARTNERS.
ONE OF THE THINGS THAT WE HAVE IN OUR ENGAGEMENT DIVISION AND
OUTREACH THAT I LEAD IS OVER A HUNDRED 15 PARTNERS THAT MAKE UP
OUR ENGAGEMENT ECOSYSTEM.
WE HAVE 14 PARTNERS AT OUR NATIONAL ENGAGEMENT AWARDEE
PARTNERS THAT INCLUDE ORGANIZATIONS WHO REPRESENT THE
VOICE AND THE PRIORITIES OF POPULATIONS WHO HAVE BEEN
HISTORICALLY UNDERREPRESENTED RESEARCH SUCH AS THE AMERICAN
ASSOCIATION ON HEALTH AND DISABILITY.
YOU HAVE BAILER CALLS AND MEDICINE WHO REALLY HELPS US TO
ENGAGE A RESEARCH COHORT IN THIS SPACE.
THE ASIAN HEALTH COALITION HAS HELPED US TO THINK ABOUT HOW DO
WE ENGAGE ASIAN-AMERICAN COMMUNITIES WHO HAVE BEEN
HISTORICALLY UNDERREPRESENTED IN RESEARCH.
THE DELTA RESEARCH AND EDUCATION FOUNDATION IS ACTUALLY THE NOT
FOR PROFIT ARM OF THE ONE OF THE SECOND OLDEST SORORITIES IN THE
US, WHICH OF AFRICAN AMERICAN WOMEN, DELTA SIGMA THETA.
THEY'RE HELPING TO THINK ABOUT HOW DO WE ENGAGE
AFRICAN-AMERICAN COMMUNITIES WHO HAVE BEEN HISTORICALLY
UNDERREPRESENTED IN RESEARCH.
50 FORWARD IS A NATIONAL ORGANIZATION TO HELP US THINK
ABOUT ENGAGING POPULATIONS THAT ARE GREATER THAN 65.
THE NATIONAL NATIONAL ALLIANCE FOR HISPANIC HEALTH HAS BEEN AN
AMAZING PARTNER IN HELPING US ENGAGE HISPANIC AND LATINO
COMMUNITIES.
AND HELPING US ENGAGE HISPANIC AND LATINO COMMUNITIES. THEY
ALSO WERE EXTREMELY INSTRUMENTAL IN ENSURING THAT WHEN OUR
PROGRAM LAUNCHED, IT LAUNCHED IN BOTH PSIS PARTNERS HAS BEEN A
PART OF THAT HELPS US ENGAGE OVER A HUNDRED 15 LOCAL AND
NATIONAL COMMUNITY PARTNERS.
NATIONAL BAPTIST CONVENTION U.S.A. HELPS US TO ENGAGE
SEVERAL FAITH COMMUNITIES. NATIONAL LIBRARY OF MEDICINE
ALLOWS US TO ENGAGE RURAL COMMUNITIES AND THINK ABOUT HOW
DO WE THINK ABOUT ACCESS.
I KNOW THAT ACCESS AND AWARENESS IS ANOTHER THING THAT THEY
INCLUDE PROGRAM HAS PRIORITIZED AND ALSO RTI RESEARCH TRIANGLE
INSTITUTE HAS BEEN ONE OF OUR PARTNERS PRIDE NEXT REALLY
INSTRUMENTAL IN HELPING US TO ENGAGE POPULATIONS WHO WILL
REPRESENT SEXUAL AND GENDER MINORITIES AND UNIVERSITY OF
FLORIDA AND NORTH RAIL.
I DESCRIBE EACH OF THESE PARTNERS BECAUSE WHAT I WANT TO
THE MESSAGE I WANT TO SAY HERE IS THAT IT REQUIRES INTENTIONAL
COLLABORATION.
OF PARTNERS WHO HAVE A TRUSTED RELATIONSHIP BUILT OVER TIME
THAT WE CAN BUILD UPON THE TRUST THAT THESE PARTNERS HAVE BUILT
TO ALLOW US TO ENGAGE COMMUNITIES IN THE ALL OF US
RESEARCH PROGRAM.
NEXT SLIDE.
I ALSO WANT TO TALK ABOUT THE CONCEPT OF VALUE. ONE OF THE
THINGS THAT WE'VE LEARNED PRIOR TO LAUNCHING THE ALL OF US
RESEARCH PROGRAM, WE ACTUALLY HOSTED OVER 71 WHAT WE CALL
COMMUNITY ROUNDTABLE AND COMMUNITY LISTENING SESSIONS.
THESE LISTENING SESSIONS ALLOWED US TO THINK ABOUT WHAT WAS
IMPORTANT TO THE COMMUNITIES THAT WE SERVE IN INCLUDING THEM
AND ENGAGING THEM IN RESEARCH.
ONE OF THE PIVOTAL STUDIES THAT THE INCLUDE PROGRAM HAS
PUBLISHED IS TALKING ABOUT WHAT ARE SOME OF THE BARRIERS THAT
HAVE PRESENTED PREVENTED CERTAIN POPULATIONS FROM BEING INCLUDED
AND ENGAGED IN BIOMEDICAL RESEARCH.
ONE OF THOSE KNOWN BARRIERS THAT BOTH INCLUDE PROGRAM AS
IDENTIFIED AS WELL AS THAT WE'VE IDENTIFIED THE ALL OF US
RESEARCH PROGRAM IS TRUST.
AND A LOT OF THAT TRUST THAT WE HAVE TO BUILD UPON IS ABOUT
RELATIONSHIP BUILDING. FOR EXAMPLE, THIS PICTURE HERE IS
ACTUALLY HIGHLIGHTING A TOWN HALL THAT WE'VE HAD IN TUSKEGEE,
ALABAMA TO ADDRESS THE HISTORICAL MEDICAL MISTRUST THAT
WE KNOW THAT EXISTS IN CERTAIN COMMUNITIES SUCH AS THE
AFRICAN-AMERICAN COMMUNITY.
FOR EXAMPLE, WE HAVE THE UNITED STATES PUBLIC HEALTH SERVICE
STUDY THAT STUDIED UNTREATED SYPHILIS IN THE AFRICAN AMERICAN
MAIL THAT TOOK PLACE IN TUSKEGEE, ALABAMA.
AS A RESULT OF STUDIES AND STUDIES LIKE THIS THAT WE KNOW
THAT CERTAIN COMMUNITIES HAVE JUSTIFIED AND UNDERSTANDABLE
MEDICAL MISTRESS AND HOW THEY WILL BE ENGAGED IN GENOMIC
RESEARCH.
BUT MORE IMPORTANTLY THAN THE LACK OF THE TRUST IS ALSO THE
ACCESS AND AWARENESS. SO WE BELIEVE IN HAVING PARTNERS, OUR
PARTICIPANT VOICES AT THE TABLE WITH US TO ADDRESS THESE ISSUES
FOR HEAD-ON.
IN THIS PICTURE ACTUALLY SHOWS MISS LILY HEAD, WHO IS A
DESCENDANT OF ONE OF THE FORMER PARTICIPANTS OF THE UNITED
STATES PUBLIC HEALTH SERVICE STUDY OF UNTREATED SYPHILIS IN
THE AFRICAN AMERICAN MALE.
IT ALSO INCLUDES THE VOICE OF THE GREAT-GRANDDAUGHTER OF
HENRIETTA LACKS, VERONICA ROBINSON.
SO HAVING PARTICIPANTS AS PARTNERS AND TELL US HOW WE CAN
DO THIS WORK AND TELL US HOW WE CAN DO THIS WORK IN A MORE
ETHICAL, INCLUSIVE, HOW WE CAN DO THIS WORK IN A MORE ETHICAL,
INCLUSIVE AND ENGAGED WAY ENSURES THAT OUR PROGRAM IS, AND
ENGAGED WAY ENSURES THAT OUR PROGRAM IS VALUED THE VOICE OF
OUR PARTICIPANTS AS PARTNERS AND
EVEN HOW WE RETURN INFORMATION TO OUR PARTICIPANTS AS PARTNERS
AND EVEN HOW WE RETURN INFORMATION TO OUR PARTICIPANTS.
NEXT SLIDE.
SO ONE OF THE WAYS THAT WE DO OUR COMMUNITY ENGAGEMENT IS
ACTUALLY BY ADAPTING A SOCIAL ECOLOGICAL MODEL THAT THINKS
ABOUT HOW DO WE ENGAGE PARTICIPANTS AS PARTNERS ACROSS
THE LIFE COURSE.
AS INDIVIDUALS THINKING ABOUT THE INDIVIDUAL FIRST AND
INTERPERSONAL AND THINKING ABOUT HOW FAMILIES AND CAREGIVERS ARE
INVOLVED IN THIS WORK, BUT ALSO COMMUNITY PARTNERS AND ADVOCACY
ORGANIZATIONS.
AND THEN UNDERSTANDING THE IMPACT OF CULTURE AND SOCIETY.
SO WE DO THIS THROUGH AN ECOLOGICAL APPROACH. WE LOOK AT
OUTREACH AND AWARENESS.
WE LOOK AT EDUCATION AND ACCESS. WE LOOK AT ENGAGING TO ENROLL
AND RETAIN AND PARTICIPANTS AS PARTNERS WITH THE FULL
INTEGRATION OF ENGAGED PARTICIPANTS TO ELEVATE THEIR
VOICES, EXPERTISE AND EXPERIENCE AS COLLABORATORS TO CO-DESIGN,
PROVIDE FEEDBACK AND CHAMPION THE RESEARCH PROGRAM.
AND WE ALSO LOOK AT KNOWLEDGE MOBILIZATION. SO I'M TRAINED AS
A CANCER DISPARITIES RESEARCHER.
AND ONE OF THE THINGS THAT I KNOW IS THAT MANY TIMES THE
RESEARCH THAT WE CONDUCT THOSE FINDINGS DON'T ALWAYS GET IN THE
HANDS OF THE PEOPLE THAT NEED THE INFORMATION.
THE MOST WE OFTEN THINK IN THE ACADEMIC SPACE THAT PUBLISHING
OR CONFERENCES IS THE WAY TO GET OUR DATA OUT.
BUT IN THE ALL OF US RESEARCH PROGRAM, WE PRIORITIZE KNOWLEDGE
MOBILIZATION. BEYOND JUST THE PUBLICATION BEYOND JUST THE
CONFERENCES, BUT THINKING ABOUT HOW CAN WE ENGAGE COMMUNITIES TO
UNDERSTAND THE DATA THAT WE'RE FINDING, TO BE ABLE TO UTILIZE
THE DATA THAT WE'RE FINDING SO THAT THEY CAN ASK INFORMED
HEALTH QUESTIONS THAT CAN
HELP INCLUDE THEM IN THIS PROCESS. NEXT SLIDE.
THESE ARE SOME EXAMPLES OF HOW WE OPERATIONALIZE OUR ECOLOGICAL
FRAMEWORK FOR COMMUNITY ENGAGEMENT. SO WE THINK ABOUT
OUTREACH AND AWARENESS.
AN EXAMPLE IS HERE OF OUR ASIAN HEALTH COALITION. THEY WERE ABLE
TO REACH OVER 158,000 PARTNERS ACROSS THE NATION THROUGH 391
VIRTUAL AND IN-PERSON EVENTS CONDUCTED BY OVER 22 PARTNERS.
WE THINK ABOUT EDUCATION AND ACCESS. NATIONAL LINES FOR
HISPANIC HEALTH COLLABORATED WITH ONE OUR BAND HERE THAT YOU
SEE HERE, WHICH WE CALL OUR MOBILE ENGAGEMENT ASSET TO
COORDINATE EVENTS WHICH HAVE RESULTED IN ALMOST 2,000 QUALITY
CONVERSATIONS AND OVER 200 PEOPLE HAVE CREATED ACCOUNTS
FROM THESE QUALITY CONVERSATIONS.
AND WE THINK ABOUT ENGAGING TO ENROLL AND RETAIN PARTICIPANTS
IN OUR PROGRAM. PICTS AS PARTNERS AS I NOTED HAVE CREATED
THE NETWORK OF OVER 151 PARTNERS ACROSS THE US THAT INCLUDES
ORGANIZATIONS LIKE THE NATIONAL RURAL HEALTH ASSOCIATION BECAUSE
WE KNOW MANY TIMES ACCESS TO CLINICAL TRIALS AND ACCESS TO
ACADEMIC MEDICAL CENTERS CAN BE A CHALLENGE AND A BURDEN FOR
OUR PARTNERS TO PARTICIPATE AND THEN PARTICIPANT AS PARTNERS.
TODAY THE PROGRAM INCLUDES 35 PARTICIPANT AMBASSADORS AT 10
PARTICIPANT PARTNERS WHO SERVE ON STEERING COMMITTEES AND
EXECUTIVE COMMUNITIES AND ADVISORY PANEL.
AND WITH OUR PARTNERS THROUGH THE NIGHT PROGRAM THROUGH
NORTHWELL HEALTH, WE'VE BEEN ABLE TO CONDUCT WHAT WE CALL
COMMUNITY SANDBOX WORKSHOPS.
WE PROMOTE THE USE OF OUR DATA WITH OVER 53 PARTICIPANTS TODAY.
NEXT SLIDE.
THIS IS AN EXAMPLE OF ONE THAT I WAS REALLY EXCITED ABOUT THAT WE
TO BE ABLE TO DEMONSTRATE HOW PARTICIPATION OUR PROGRAM
DESIGN, IMPLEMENTATION, AND EVEN GOVERNANCE.
THE PICTURE YOU SEE ON THE RIGHT HERE IS A PICTURE OF ONE OF OUR
PARTICIPANT AMBASSADORS WHO'S PARTICIPANT IN THE PROGRAM
MICHELLE.
THIS IS AN IMAGE WHERE MICHELLE WAS ACTUALLY HER STORY WAS
ACTUALLY TOLD AND THE PEOPLE MAGAZINE RECENTLY TO HIGHLIGHT
HER JOURNEY AND WHY MICHELLE'S SAID IT WAS SO IMPORTANT FOR HER
TO PARTICIPATE IN THE OLIVER'S RESEARCH PROGRAM.
AND THE PICTURE YOU SEE ON THE LEFT THERE IS ACTUALLY WHERE WE
HAVE OUR PARTICIPANT AMBASSADORS WHO JOINED ALL OF OUR RESEARCH
PARTNERS.
AND ONE OF OUR NATIONAL CONVENIENCE TO TALK ABOUT THE
IMPORTANCE OF THE PARTICIPANT VOICE IN PARTNERING WITH US IN
THIS PROGRAM.
NEXT SLIDE.
AND PRIORITIZING INTERSECTIONALITY AND SOCIAL
DETERMINANTS OF HEALTH AND BIOMEDICAL RESEARCH. SO ONE OF
THE THINGS THAT THE ALL OF US DATA SET IS REALLY COMMITTED TO
IS MAKING SURE THAT WE UNDERSTAND HOW BIOLOGY,
ENVIRONMENT AND LIFESTYLE FACTORS, HOW THEY CAN INTERSECT
HOW THESE RESEARCH FOCUSES ON THE INTERSECTIONALITY OF THESE 3
FACTORS.
SO FOR EXAMPLE, WE KNOW THAT OVER ALMOST 14% OF OUR
PARTICIPANTS HAVE ANNUAL INCOME FROM LESS THAN $10,000 A YEAR.
ABOUT 5.8% OF OUR PARTICIPANTS THEIR HIGHEST GRADE LEVEL
ACHIEVE IS NINTH THROUGH ELEVENTH GRADE. ABOUT 6.5% OF
OUR PARTICIPANTS ARE NOT COVERED BY HEALTH INSURANCE AND ALMOST
17% OF OUR PARTICIPANTS HAVE NOTED THAT THEY'VE BEEN WORRIED
OR CONCERNED ABOUT NOT HAVING A PLACE TO LIVE WITHIN THE LAST 6
MONTHS WHEN TAKING THE SOCIAL TERMS OF HEALTH SERVING.
SO WHAT WHAT AMAZING VALUE THAT THAT INFORMATION WOULD HAVE, WE
CONNECT THAT INFORMATION WITH GENETIC INFORMATION THAT WE
RECEIVE BY ALLOWING INFORMATION THAT WE RECEIVE AND EVEN
UNDERSTANDING ENVIRONMENTAL FACTORS.
ALL OF THIS INFORMATION WOULD ALLOW US TO BETTER UNDERSTAND
INTERSECTIONALITY ACROSS THE LIFE COURSE TO ASK RESEARCH
QUESTIONS THAT REALLY PRIORITIZE US ADDRESSING HEALTH
DISPARITIES.
NEXT SLIDE.
SO PRIORITIZING SECTIONALITY AS I NOTED, ANOTHER PIECE THAT WE
LIKE TO PRIORITIZE AND NOTE IS THAT IN ADDITION TO INCLUDING
DIVERSE POPULATIONS BY RACE AND ETHNICITY, WE'VE ALSO INCLUDED
POPULATIONS ACROSS THE LIFE COURSE.
WE ARE ABLE TO BUILD BETTER TOOLS FOR DETECTING HEALTH
CONDITIONS, FIND OUT HOW ENVIRONMENT LIFESTYLE AND GENES
CAN IMPACT HELP AND IDENTIFY WHAT PEOPLE ARE MORE LIKELY TO
DEVELOP DISEASE BY HAVING A DIVERSE COHORT.
AND ON THIS THIS BAR GRAPH HERE, YOU SEE SOME OF THE DIVERSITY
THAT WE HAVE IN OUR COHORT, INCLUDING POPULATIONS THAT ARE
SECTIONS IN A MINORITY ABOUT 10% AND ALSO INCLUDING POPULATIONS
WHO ARE LIVING IN RURAL COMMUNITY AREAS.
NEXT SLIDE.
FOR EXAMPLE, ANOTHER WAY WE PARTNER WITH OUR NATIONAL
ENGAGEMENT PARTNERS IS TO REALLY FOR US, WE HAVE SOMETHING THAT
WE SAY IN OUR PROGRAM IS NOTHING ABOUT US WITHOUT US BY INVITING
POPULATIONS LIVING WITH DISABILITIES TO CONTRIBUTE TO.
BY INVITING POPULATIONS LIVING WITH DISABILITIES TO CONTRIBUTE
TO RESEARCH, TO CONTRIBUTE TO RESEARCH, TO CONTRIBUTE TO
RESEARCH, TO ADVANCING INDIVIDUALIZED TREATMENT AND
CARE FOR ALL.
ONE OF OUR PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH
AND DISABILITY TREATMENT AND CARE FOR ALL. ONE OF OUR
PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH AND
DISABILITY.
THEY'VE BEEN INSTRUMENTALIZED TREATMENT AND CARE FOR ALL. ONE
OF OUR PARTNERS IS THE AMERICAN ASSOCIATION OF HEALTH AND
DISABILITY.
THEY'VE BEEN INSTRUMENTAL IN THINKING ABOUT HOW DO WE DEFINE
DEFINITIONS, FOR EXAMPLE, OF PARTNERS, DISABILITY DEFINITIONS
AND METRICS.
ALSO OUR COMMUNITY ADVISORY BOARD AND OUR WORKBENCH USERS.
AND NOW THEY'RE ACTUALLY THINKING ABOUT HOW CAN WE
INCLUDE MORE POPULATIONS EVEN POPULATIONS WITH INTELLECTUAL
DISK LIVING WITH INTELLECTUAL DISABILITIES IN OUR PROGRAM.
HOW CAN WE BE EVEN MORE INCLUSIVE? AND SO THIS IS ONE OF
THE BENEFITS OF HAVING NATIONAL PARTNERS WHO CAN REPRESENT THIS
SPACE.
NEXT SLIDE. AND I DO SEE THAT THERE'S QUESTIONS IN THE CHAT
AND I BELIEVE THAT WE'LL HAVE OPPORTUNITIES AT THE END TO
ADDRESS SOME OF THOSE QUESTIONS.
ANOTHER EXAMPLE I WANT TO POINT OUT IS THE PARTNERSHIP WITH
ORGANIZATIONS LIKE PRIDE NET. THEY'VE BEEN INSTRUMENTAL IN
HELPING US TO ENGAGE POTENTIAL POPULATIONS.
WHERE WE THINK ABOUT WHAT ARE SOME OF THE BARRIERS THAT
POPULATIONS WHO ARE SECTION GENDER MINORITIES HAVE HAD AND
PARTICIPATED IN RESEARCH.
BUT ANOTHER THING THAT PRINET HAS DONE THAT I KNOW IS
IMPORTANT TO THIS GROUP AS WELL IS ENSURING THAT RESEARCHERS
UNDERSTAND HOW TO THE LANGUAGE THAT CAN BE USED IN ENGAGING
THIS POPULATION AND THE CULTURE VALUES THAT CAN INCLUDE TO
ENGAGE THIS POPULATION.
NEXT SLIDE.
SO THESE ARE JUST SOME OF THE MULTIPLE WAYS I FEEL THAT WE CAN
WORK TOGETHER TO DEVELOP MORE APPROPRIATE COMMUNITY AWARENESS
ABOUT TRIALS, ACCESS AND AWARENESS.
AND DEVELOPED APPROPRIATE MATERIALS TO ASSESS HEALTH
OUTCOMES, QUALITY OF LIFE AND OTHER CONDITIONS THAT ARE
IMPORTANT TO ALL COMMUNITIES.
NEXT SLIDE. THIS IS HOW YOU CAN LEARN MORE ABOUT THE OLIVER'S
RESEARCH PROGRAM BY VISITING ALL OF US.
DOT ORG AND SCAN THIS QR CODE OR ALSO TO FIND OUT HOW YOU MAY BE
ABLE TO DEVELOP TO INFORM QUESTIONS YOU HAVE ABOUT THE
ALBANS RESEARCH PROGRAM AND HOW WE CAN BE MORE INCLUSIVE.
NEXT SLIDE.
MY CONTENT INFORMATION IS HERE AND I LOOK FOR I THANK YOU ALL
FOR THIS OPPORTUNITY AND I LOOK FORWARD TO JOINING YOU ALL IN
THE QUESTION AND ANSWER SESSION LATER ON THIS AFTERNOON.
THANK YOU, DR. WATSON. CAN YOU ALL HEAR ME?
YES, WE CAN.
GREAT. SO I KNOW I WAS CUT OFF WHEN I WAS INTRODUCING THE
SPEAKER. SO I WOULD REINTRODUCE DR.
AMELIE RAMIREZ. SHE IS A PROFESSOR AND CHAIR OF THE
DEPARTMENT OF POPULATION HEALTH SCIENCES AT UT HEALTH SAN
ANTONIO, WHICH IS A HISPANIC SERVING INSTITUTE.
SHE IS A HEALTH EQUITY PIONEER WHO HAS ACHIEVED NATIONAL AND
INTERNATIONAL RECOGNITION FOR HER SUBSTANCES IN REDUCING
LATINO CANCER HEALTH DISPARITIES.
SHE HAS BEEN RECOGNIZED BY OPRAH WINFREY. OBAMA WHITE HOUSE,
SUSAN G. COLEMAN, AND MANY MORE.
WELCOME, DR. RAMIREZ.
THANK YOU SO MUCH. IT'S REALLY A PLEASURE TO BE HERE WITH ALL OF
YOU. SO BIG GRASS, YES. THANK YOU AGAIN.
I'M REALLY LOOKING FORWARD TO SHARING MY INFORMATION IF I
COULD HAVE MY SLIDES PULLED UP THAT WOULD BE GREAT.
AND THANK YOU, DR. WATSON, FOR THAT AMAZING. PRESENTATION ON
THE ALL OF US PROGRAMS.
MY PRESENTATION IS REALLY GOING TO FOCUS MORE ON THE LATINO
COMMUNITY, THE HISPANIC COMMUNITY HERE IN THE US.
MANY OF YOU KNOW THAT THE LATINO COMMUNITY HAS REALLY GROWN
SIGNIFICANTLY HERE IN THE UNITED STATES AND I'D LIKE TO MENTION
THAT THAT DISNEY MOVIE CALLED IN CANTO, THERE IS A BYLINE THAT
SAID THERE WE DON'T TALK ABOUT BRUNO SOMETIMES I FEEL HERE IN
THE UNITED STATES WE DON'T TALK ABOUT LATINO OR
HISPANICS AND AND EVEN JUST THE TERMS THAT WE USE TO DESCRIBE
OUR POPULATIONS OR SOMETIMES CONTROVERSIAL. THE TERM HISPANIC
IS A GOVERNMENT TERM AND SO INDIVIDUALS FROM LATIN AMERICA
PREFERRED TO BE CALLED LATINOS AND WE SEE THIS DIFFERENCE FROM
THE EAST AND WEST COAST IN TERMS OF HOW WE SOMETIMES REFER TO OUR
OWN, SPANISH DESCENT.
AND AS YOU CAN SEE HERE IN THIS MAP, OR YOU KNOW, THE HIGHEST
CONCENTRATION OF LATINOS TEND TO BE IN TEXAS IN CALIFORNIA, BUT
OVER THE YEARS WE HAVE LATINOS AND ALMOST EVERY COUNTY HERE IN
THE UNITED STATES AND EVEN IN SOME OF OUR MOST NORTHERN
COUNTIES SUCH AS THE DAKOTAS WE'RE SEEING INCREASES IN SOME
OF OUR MOST NORTHERN COUNTIES SUCH AS THE
DAKOTAS WE'RE SEEING INCREASES IN OUR HISPANIC POPULATION.
HOWEVER, OUR COMMUNITY TRULY HAS SOME MAJOR CHALLENGES IN TERMS
OF THEIR THEY TEND TO BE THE EDUCATION LEVELS TEND TO BE
LOWER OUR INCOMES TEND TO BE LOWER AS WELL WE HAVE HIGHER
RATES OF POVERTY HAVE POOR ACCESS TO HEALTH CARE.
AND SO FOR ME IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO. AND SO
FOR ME, IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO REACH,
HAVE SPECIAL EFFORTS TO REACH OUT AND FOR OUR COMMUNITIES.
AND SO FOR ME, IT'S ALWAYS BEEN IMPORTANT THAT WE TRY TO REACH
HAVE SPECIAL EFFORTS TO REACH OUT AND FOR OUR COMMUNITIES.
AND MY EFFORTS HAVE BEEN FOCUSING PREDOMINANTLY IN THE
AREA OF CANCER, BUT I'VE ON THE NEXT SLIDE, LATELY WE'VE BEEN,
FOCUSING NEXT SLIDE.
HAVE REALLY BEEN FOCUSING ON CLINICAL TRIALS. WE KNOW THAT
IT'S VERY IMPORTANT TO HAVE, MEDICATIONS THAT WORK FOR ALL
POPULATION GROUPS.
BUT THERE HAS BEEN AN AMAZING UNDERREPRESENTATION OF DIVERSE
AUDIENCES IN CLINICAL TRIALS AND VERY LIMITED INFORMATION
AVAILABLE BY RACIAL AND ETHNIC GROUPS.
SO IN THIS SLIDE, EVEN THOUGH LATINOS NOW MAKE UP 19% OF THE
US POPULATION, THE LARGEST UNDERREPRESENTED POPULATION IN
THE UNITED STATES.
WE ONLY REPRESENT ABOUT 4% OF SOME OF THE FDA TRIALS AND LESS
THAN 10% OF SOME OF THE NIH TRIALS AND AS DR.
WATSON MENTIONED EVEN LESS FROM GENOMICS RESEARCH AND AS WE
BECOME MORE IMPORTANT WITH REGARDS TO PRECISION MEDICINE,
KNOWING MORE ABOUT OUR GENOMICS IS VERY IMPORTANT.
AND THEN IF YOU TRY TO DISTILL THAT DOWN TO KNOWING MORE ABOUT
POPULATIONS WITH DISABILITY BY THEIR DIFFERENT RACIAL AND
ETHNIC BACKGROUNDS, YOU'LL REALIZE THAT THE NUMBER, YEAH,
ALSO BECOMES EXTREMELY SMALL.
SO ON THE NEXT SLIDE, WE TALKED A LITTLE BIT ABOUT THE BARRIERS
TO CLINICAL TRIAL PARTICIPATION. AND AS WAS MENTIONED BY DR.
WATSON, YOU KNOW, THE LACK OF AWARENESS OF JUST TRIALS. WHY
ARE TRIALS IMPORTANT? WHY IS IT IMPORTANT FOR US TO PARTICIPATE
IN THESE OPPORTUNITIES.
THERE'S ALSO LESS KNOWLEDGE ABOUT THE DISEASE AND TREATMENT
OPTIONS AND HOW BEING IN A TRIAL IS ACTUALLY A TREATMENT OPTION.
AND THEN WE HAVE OUR CULTURAL, OUR LANGUAGE AND LITERACY
ISSUES, YOU KNOW, ARE THEM INFORMATION AVAILABLE AT A
READING LEVEL WHERE OUR COMMUNITY FULLY UNDERSTANDS IT.
DO WE HAVE PICTURES THAT REFLECT US IN IN THE PRINTED MATERIALS
THAT ARE AVAILABLE. AND THEN LAST BUT NOT LEAST, THE WHOLE
ISSUE OF COST MANY TIMES TO PARTICIPATE IN A CLINICAL TRIAL,
YOU HAVE TO BE ABLE TO PAY FOR SOME OF THE BASIC LABS THAT ARE
REQUIRED TO SEE IF YOU ARE ELIGIBLE FOR A TRIAL.
AND AGAIN, WE HAVE SOME OF THE LOWEST RATES OF INSURANCE
COVERAGE IN THE LATINO POPULATION. AND THEN ALSO TRAVEL
TO TRIAL CENTERS.
AND THEY'RE NOT, TRIALS AVAILABLE IN MANY OF OUR RURAL
AREAS. SMALLER CITIES AND SO THEREFORE TO PARTICIPATE IN A
TRIAL OFTENTIMES OUR COMMUNITY HAS TO HAVE GOOD TRANSPORTATION
TO BE ABLE TO PARTICIPATE IN A TRIAL.
THE NEXT SLIDE TALKS ABOUT WE KNOW SOME OF THE UNDER
REPRESENTATION OF LATINOS IN CLINICAL TRIALS. WE ARE KNOW
THAT CANCERS ON THE RISE IN OUR LATINO COMMUNITY ARE POPULATION
IS GETTING OLDER.
SOME OF THE CANCERS THAT OUR COMMUNITY FACES ARE OUR CANCERS
THAT ARE NOT WELL STUDIED AND THEY'RE NOT NECESSARILY THE ONES
THAT ARE WE SEE IN IN THE GENERAL POPULATION.
FOR EXAMPLE, WE HAVE HIGHER RATES OF LIVER CANCER, STOMACH,
CANCER, GALLBLADDER, AND CERVICAL CANCER.
AS OPPOSED TO MAYBE BREAST CANCER OR PROSTATE. BUT AT THE
SAME TIME, CANCER HAS BECOME THE LEADING CAUSE OF DEATH FOR
LATINOS AND WE DON'T UNDERSTAND WHY THIS HAS HAPPENED.
THE NEXT SLIDE. SO AGAIN, WHAT WE'RE TRYING TO DO HERE IN SOUTH
TEXAS THROUGH OUR MEDICAL SCHOOL AND OUR CANCER CENTER IS REALLY
TRYING TO HELP OVERCOME THOSE BARRIERS TO PARTICIPATION.
SO WE REALLY PUT A LOT OF EMPHASIS ON BUILDING TRUST
BETWEEN OUR PATIENTS AND THE DOCTOR THAT THEY ARE SEEING AND
WHERE THE TRIAL IS BEING OFFERED.
WE ALSO TRY TO FOSTER THE UNDERSTANDING THAT BY JOINING A
CLINICAL TRIAL, YOU ARE HELPING FUTURE CANCER PATIENTS AS WELL.
NOT ONLY HOPEFULLY BENEFITING YOURSELF, BUT THE FUTURE IN
FUTURE GENERATIONS. WE'RE TRYING TO PRESENT OUR INFORMATION IN A
USABLE AND EASY TO USE FORMAT SO THAT WE CAN INCREASE THE
KNOWLEDGE ABOUT CLINICAL TRIALS AND AGAIN WE RECOGNIZE THAT
INDIVIDUALS ARE NOT ALONE.
THEY HAVE A SUPPORT FAMILY WITH THEM AS WELL. AND SO THAT UNDER
UNDERSTANDING THAT THE FAMILY ALSO CONTRIBUTES TO THE
PATIENT'S DECISION MAKING.
SO WE ARE A VERY ENGAGING OF THE FAMILY. SO ON THE NEXT SLIDE IS
JUST, OH, I'M GONNA SHOW YOU SEVERAL EXAMPLES OF SOME OF THE
WORK THAT WE HAVE DONE HERE IN SAN ANTONIO WITH OUR CANCER
CENTER.
FIRST OF ALL, WE TOOK A DEEP DIVE INTO WHAT WAS GOING ON
WITHIN OUR OWN CANCER CENTER. WHAT DID TRIAL PARTICIPATION
LOOK LIKE FOR US?
WE'RE IN A COMMUNITY REPRESENTING 38 COUNTIES HERE IN
SOUTH TEXAS OF WHICH ARE ALREADY 60% OF OUR POPULATION IS
HISPANIC OR LATINO.
YET THEY WERE UNDERREPRESENTED IN OUR CLINICAL TRIALS. SO WE
WENT AND CONDUCTED FOCUS GROUPS. BOTH WITH PATIENTS AND OUR
PROVIDERS TO FIND OUT WHAT WERE SOME OF THE STUMBLING BLOCKS IN
IN PROVIDING TRIALS TO OUR PARTICIPANTS.
WE ALSO EXPANDED OUR EDUCATIONAL EFFORTS NOT ONLY TO THE
COMMUNITY, BUT ALSO WORKING WITH OUR PROVIDERS, WERE THEY DOING
THEIR BEST AND TRYING TO MAKE SURE THAT THE INCLUSION CRITERIA
FOR SOME OF THE TRIALS WERE WERE APPLICABLE TO THE POPULATION
THAT THEY WERE SERVING.
AND SO THEREFORE AS A GROUP INTERNAL GROUP WE CAME UP WITH
SOMETHING THAT WAS CALLED THE MINORITY OF CRUEL PLAN FOR ALL
CLINICAL TRIALS.
SO NOW AN INVESTIGATOR THAT OPENS THE TRIAL AT OUR OUR
CANCER CENTER THEY HAVE TO SHOW THE YOU KNOW A REPORT AND SHARE
SHARE WITH US WHAT THEY PLAN TO DO TO MAKE SURE THAT THEY ARE
GOING TO TRY TO INCLUDE AS MANY OF PARTICIPANTS AS POSSIBLE FROM
OUR SERVICE AREA.
SO WE WORKED WITH THEM. WE CAME UP WITH A CHECKLIST. WE HAVE A
PROGRAM COORDINATOR THAT IS AVAILABLE TO HELP THEM TRANSLATE
SOME OF THEIR INFORMED CONSENT FORMS TO TALK ABOUT DO WE NEED
TO PROVIDE THE CONSENT FORMS NOT ONLY IN A WRITTEN FORMAT PERHAPS
IN A VIDEO FORMAT, DIFFERENT TYPES OF WAYS TO ENSURE THAT WE
ARE TRULY ENCOURAGING
THE PARTICIPATION OF THE PARTICIPANT. AND WE EVEN KNOW
WHEN WE TRIED THIS WE HAVE SEEN A MODEST INCREASE FROM 42% TO
49% OF PARTICIPANTS PARTICIPATING IN OUR CLINICAL
TRIALS.
WE SAID WE'VE GOT TO DO MORE. SO ON THE NEXT SLIDE, I'LL SHOW
YOU.
A PROJECT THAT WE DEVELOPED THAT'S CALLED THE CHOICES
INTERVENTION. THIS PROJECT IS SUPPORTED BY THE SUSAN G.
COLEMAN FOUNDATION AND WAS REALLY FOCUSED ON EMPOWERING
LATINAS TO MAKE INFORMED DECISIONS ABOUT BREAST CANCER
CLINICAL TRIALS.
AND SOME OF THE THINGS THAT WERE IMPORTANT AND WHAT WE DID HERE
IS THAT WE WERE FOCUSING ON ENHANCING KNOWLEDGE, ATTITUDES
AND SKILLS FOR THIS PARTICULAR POPULATION.
BUT WE ALSO WANTED TO INCREASE THE PATIENT SELF-EFFICACY. WHAT
DO WE MEAN BY THAT? THAT BY SEEING INDIVIDUALS LIKE
THEMSELVES MAKING POSITIVE DECISIONS.
HOW ABOUT WHETHER THEY SHOULD PARTICIPATE IN A TRIAL OR NOT
MADE A DIFFERENCE FOR OUR OUR PATIENTS AND WE ALSO WANTED TO
ENCOURAGE THEM TO FEEL FREE TO DISCUSS CLINICAL TRIALS AS A
TREATMENT OPTIONS NOT ONLY WITH THEIR DOCTOR BUT WITH THEIR
FAMILIES.
SO WE HAD BOTH PRINTED MATERIALS, WE HAD SOME VIDEO
MATERIALS AND WE WORKED VERY CLOSELY WITH THE CLINICIANS.
THE INDIVIDUALS THAT WERE ELIGIBLE FOR THIS STUDY INCLUDED
IN INDIVIDUALS WHO HAD BEEN DIAGNOSED WITH BREAST CANCER BUT
HAD NOT YET CONSULTED WITH THEIR DOCTOR TO FIND OUT WHAT
TREATMENT OPTIONS THEY WOULD BE OFFERED.
SO WE TRIED TO TO CONTACT THE PATIENT BEFORE THEY MET WITH THE
DOCTOR AND THAT THEY ALSO HAD NOT YET PARTICIPATED IN A
CLINICAL TRIAL, BUT THAT THEY WOULD BE ELIGIBLE BASED ON THE
MEDICAL RECORDS FOR A PHASE 3 OR A PHASE 4 TRIAL AND MAYBE LATER
ON WE CAN TALK ABOUT THE DIFFERENT PHASES OF TRIALS, TO
GET MORE, HELP OUR
COMMUNITY, THAT'S LISTENING TODAY, A BETTER UNDERSTANDING OF
THE DIFFERENT PHASES OF CLINICAL TRIALS.
BUT IN OUR CASE, WE WANTED TO MAKE SURE THAT THE 12 WOMEN
WOULD BE ELIGIBLE FOR THE MOST OPEN TRIALS.
THAT WE WILL PROVIDE, FOR THEM. SO ON THE NEXT SLIDE, WHAT WE
SHOW HERE IS THAT WE, HAD SOME VERY POSITIVE RESULTS.
CHOICES WAS MORE EFFECTIVE IN IMPROVING PERCEIVED
UNDERSTANDING OF CLINICAL TRIALS. AND THE INCREASED
CONSIDERATION OF PARTICIPATING IN CLINICAL TRIALS AS A AS A
TREATMENT OPTION AND ALSO WITHIN OUR INTERVENTION GROUP,
PARTICIPANTS SHOWED GREATER SIGNIFICANT CHANGES IN STAGES OF
CHANGE.
FOR EXAMPLE, IF THEY KNEW NOTHING ABOUT A TRIAL, THEIR
INFORMATION IN IMPROVED AND THEIR KNOWLEDGE ABOUT IT IN
TERMS OF GOING TO THE NEXT STEP AND BEING WILLING TO LISTEN TO
IF THEY WOULD CONSIDER GOING INTO A TRIAL.
AND THEY WERE ALSO MORE LIKELY TO TALK TO THEIR DOCTORS ABOUT
CLINICAL TRIALS TO TALK WITH FAMILY AND FRIENDS AND TO
CONSIDER THE PROS AND CONS OF PARTICIPATING IN A CLINICAL
TRIAL.
SO SOME OF THE SPECIFIC LESSONS LEARNED WAS THAT JUST RAISING
AWARENESS DOES NOT BOOST PARTICIPATION ALONE. AND WE HAVE
TO ADDRESS SOME OF THE OTHER BARRIERS.
AND SO THEREFORE BARRIERS TO PARTICIPATION ARE COMPLEX AND
THEY'RE MULTI-FACETED. SO WE HAVE TO DESIGN PROGRAMS THAT
MAKE SURE THAT WE HAVE A HEALTHCARE SYSTEM THAT HAS THE
INFORMATION THAT THEY NEED TO SHARE WITH THEIR PATIENTS AS
WELL AS WORKING WITH THE PROVIDERS.
AND THE PATIENTS. IT HAS TO BE A COMPREHENSIVE PROGRAM. ANOTHER
PART THAT WE FELT WAS REALLY IMPORTANT IS THAT WE INTRODUCED
PATIENT NAVIGATORS THAT COULD ANSWER QUESTIONS THAT PERHAPS
THE PATIENT FELT MORE AT EASE AND ASKING THEM VERSUS THE
DOCTOR.
SOMETIMES PATIENTS FEEL I DON'T WANT TO TAKE UP THE DOCTOR'S
TIMES OR SOMETIMES OUR DOCTORS ARE PHYSICIANS ARE PRESSED FOR
TIME AND SO THEREFORE HAVING A PATIENT NAVIGATOR WHO LOOKED
LIKE THAT PATIENT COULD WOULD BE THERE AVAILABLE TO ANSWER MORE
SPECIFIC QUESTIONS.
AND SO THEY COULD THEN FOLLOW UP TO FOCUS ON, YOU KNOW,
EXPLAINING A LITTLE BIT FURTHER WHAT OPTIONS THE PROVIDER HAD
GIVEN TO THE PATIENT.
AND THEN WE ALSO DESIGNED SOME COMPUTER-BASED VIDEOS THAT WERE
EFFECTIVE. SO THAT WAS OUR CHOICES PROJECT AND NOW WE'RE
EVEN EXPANDING THAT TO ENCOURAGE PATIENTS AS THEY COME INTO OUR
CLINICS TO BE EXPOSED TO A WIDE VARIETY OF INFORMATION ABOUT
CLINICAL TRIALS.
THE NEXT SLIDE IS A PROGRAM SOME OF YOU MIGHT BE FOLLOWING US
NOW. WE HAVE A LARGE, ADVOCACY NETWORK CALLED SALUDA MEDICA
PROGRAM.
ORIGINALLY WE STARTED AS A CHILDHOOD OBESITY PREVENTION
PROGRAM AND WE HAVE JUST NOW EXPANDED IT TO REALLY LOOK AT
SOME OF THE SOCIAL DETERMINANTS OF HEALTH THAT ARE IMPACTING OUR
LATINO COMMUNITY AND IT'S IT'S IT'S A WIDE ARRAY OF NETWORK AND
INFORMATION THAT WE PROVIDE.
WE PROVIDE INFOGRAPHICS. WE PROVIDE SHORT VIDEOS ON
DIFFERENT TOPICS ON ISSUES THAT ARE OF IMPORTANCE TO THE LATINO
COMMUNITY.
BUT WE WERE ABLE TO WORK. TO RECEIVE A GRANT FROM JANETEK TO
CREATE A PROGRAM THAT REALLY TAUGHT AND FOCUSED ON CLINICAL
TRIALS.
SO WITH THIS NEW FUNDING FROM GENENTE THAT ACTUALLY CAME FROM
THERE. INTEREST IN PROMOTING HEALTH EQUITY AND DIVERSITY NOT
ONLY IN THE STEM FIELDS WHICH ARE SCIENCE, TECHNOLOGY,
ENGINEERING AND MEDICINE, BUT ALSO TO EXPAND THE INCLUSIVENESS
OF CLINICAL TRIALS AND RECRUITMENT.
SO WITH GENENTECH SUPPORT WE ARE DEVELOPING CULTURALLY RELEVANT
DIGITAL HEALTH COMMUNICATIONS. AND NOW WE'VE REACHED OUT TO
DIFFERENT ADVOCACY NETWORK INDIVIDUALS AND CLINICAL
PARTNERS TO PROMOTE HEALTH EQUITY AND TO ALSO ADVANCE
CLINICAL TRIALS FOR NOT ONLY THE TREATMENT OF CANCER, BUT
ALZHEIMER'S AS WE'RE FINDING THAT ALZHEIMER'S IS ALSO
IMPACTING OUR LATINO COMMUNITIES AS WELL. AND LATINOS ARE ONE OF
THE LARGEST USERS OF SOCIAL MEDIA.
AND SO WE HAVE, YOU KNOW, RECEIVED A LOT OF SUCCESS IN
USING ON WEB-BASED, ON FACEBOOK, USING, WEBINARS AND DIFFERENT
TYPES OF FORMAT FOR REACHING OUR AUDIENCE.
AND RIGHT NOW OUR NETWORK IS GREATER THAN 500,000.
INDIVIDUALS. SO THEN THE NEXT SLIDE IS THAT WE, DESIGNED A 4
PART TYPE, SAN DIEGO PROGRAM TO HELP US ADDRESS CLINICAL TRIALS.
THE FIRST AGAIN WAS TO PROMOTE BILINGUAL BY CULTURAL
INFORMATION ON CLINICAL TRIALS. AND SO WE IDENTIFY LATINOS WHO
HAVE PARTICIPATED IN A CLINICAL TRIAL.
WE INTERVIEW THEM AND ASK THEM WHY THEY FEEL THIS IS IMPORTANT,
WHAT KIND OF A DIFFERENCE HAS IT MADE IN THEIR LIFE.
AND WE ALSO TALKED TO OUR PHYSICIANS, OUR LATINO
PHYSICIANS AND GET SOME INFORMATION FROM THEM IN TERMS
OF WHAT DO THEY SEE AND HOW DO THEY FEEL ABOUT CLINICAL TRIALS.
SO WE DEVELOP INFOGRAPHICS AND WEBINARS. SO WE PROMOTE
INFORMATION ON CLINICAL TRIALS, THE NEED FOR BIOSPECIMEN
DONATION AND TO INCREASE THE UNDERSTANDING AND AWARENESS
ABOUT CLINICAL TRIALS AS AS AN OPTION.
AND SO HERE ARE SOME OF THE EXAMPLES OF THE THINGS THAT
WE'VE DONE THROUGH THE SECOND COMPONENT ON THE NEXT SLIDE IS
THAT WE, ALSO PROMOTE OPEN TRIALS THAT ARE AVAILABLE IN OUR
COMMUNITY OR WE PROMOTE, EXCUSE ME, THE NIH WEBSITES THAT, ALSO
SHARE WITH YOU TRIALS THAT ARE AVAILABLE.
AND SO HERE ARE SOME OF THE TRIALS THAT WE CURRENTLY HAVE
HERE IN THE SAN ANTONIO AREA. ONE WITH IT WAS ON PROSTATE
CANCER, THE TRIALS THAT WE CURRENTLY HAVE HERE IN THE SAN
ANTONIO AREA, ONE WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE
WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE IN WHICH WE'RE
RECRUITING ONE WITH IT WAS ON PROSTATE CANCER, ANOTHER ONE IN
WHICH WE'RE RECRUITING 1,500 LATINO CANCER SURVIVORS TO HEAR
THEIR STORIES AND TO TELL US ABOUT THE DIFFERENT, LATINO
CANCER SURVIVORS TO HEAR THEIR STORIES AND TO TELL US ABOUT THE
DIFFERENT, ISSUES THAT THEY HAVE ENCOUNTERED IN ON THE NEXT SLIDE
IS THAT THE THIRD ELEMENT OF OUR SALUTE IMERICA MODEL IS THAT WE
AS I MENTIONED EARLIER, WE USE REAL ROLE MODELS FROM THE
COMMUNITY TO TELL US THEIR STORY.
YOU KNOW, WHAT WAS IT THAT THEY COULD, YOU KNOW, MOTIVATED THEM
TO PARTICIPATE IN THE TRIAL. WHAT WAS IT THAT THEY COULD, YOU
KNOW, MOTIVATED THEM TO PARTICIPATE IN THE TRIAL.
WHAT WAS THEIR DECISION MAKING PROCESS? AND WE MAKE THESE
VIDEOS BOTH OF AVAILABLE IN, IN ENGLISH, IN SPANISH AS WELL.
AND THEN ON THE NEXT SLIDE, THE FOURTH STEP IS THAT IT'S NOT ALL
ABOUT SHOULDERING JUST ON OUR PATIENTS, BUT IT'S ALSO
INCREASING THE KNOWLEDGE OF OUR PROVIDERS.
WE WANT TO MAKE SURE THAT OUR PROVIDERS DON'T MAKE DECISIONS
FOR US FOR IN TERMS OF SAYING, WELL, I'M NOT GOING TO OFFER
THIS TRIAL TO THIS INDIVIDUAL BECAUSE THEY'RE LACKING
INSURANCE OR THEY MAY HAVE TROUBLE TO GETTING HERE OR WE
MAY THEY MAY NOT COME IN AS OFTEN AS WE THINK.
SO WE HAVE DEVELOPED AN EDUCATIONAL PROGRAM TO ENSURE
THAT OUR OWN PROVIDERS DON'T CARRY BIASES THAT MIGHT BE, YOU
KNOW, OMITTING PEOPLE WHO ARE TRULY ELIGIBLE FOR PARTICIPATING
IN A CLINICAL TRIAL.
SO THIS IS AGAIN, IT'S ON OUR WEBSITE, YOU'RE FREE TO DOWNLOAD
IT FOR PARTICIPATING IN A CLINICAL TRIAL.
SO THIS IS AGAIN IT'S ON OUR WEBSITE YOU'RE FREE TO DOWNLOAD
IT AND AND SHARE IT WITH OTHER.
SO THIS IS AGAIN IT'S ON OUR WEBSITE YOU'RE FREE TO DOWNLOAD
IT AND AND SHARE IT WITH OTHER INDIVIDUALS AND IT JUST REALLY
TELLS YOU ARE YOU CARRYING A BIAS AND IF SO WHAT YOU CAN DO
TO GO ABOUT CHANGING YOUR ACTIONS AND BECOMING MORE OPEN
TO INC AND THEN, THE NEXT SLIDE, I JUST WANTED TO BRIEFLY
SUMMARIZE. THOSE ARE JUST SOME OF THE EXAMPLES OF SOME OF THE
THINGS THAT WE'RE DOING IN THE AREAS OF CLINICAL TRIALS.
BUT I HAD TO SUMMARIZE SOME OF OUR BEST PRACTICES AND
RECOMMENDATIONS. BUT I WANTED TO SUMMARIZE SOME OF OUR BEST
PRACTICES AND RECOMMENDATIONS.
IF YOU'RE GOING TO USE EDUCATIONAL VIDEOS, MAKE SURE
THAT THEY ARE CULTURALLY TAILORED TO YOUR COMMUNITY.
IF YOU'RE GOING TO USE EDUCATIONAL VIDEOS, MAKE SURE
THAT THEY ARE CULTURALLY TAILORED TO, TO YOUR COMMUNITY
THAT YOU, THAT IT HAS A STRONG NARRATIVE OF, YOU KNOW, WHY IT
WAS IMPORTANT FOR THEM TO PARTICIPATE IN A CLINICAL TRIAL.
ALSO TRY USING PATIENT NAVIGATORS. OR THERE'S SO MUCH
INFORMATION. IF YOU KNOW, PARTICULAR, IF YOU'RE DIAGNOSED
WITH CANCER OR LIFE THREATENING DISEASE, YOU KNOW, IT'S HARD TO
ABSORB ALL THE INFORMATION THAT YOU HAVE TO KNOW ABOUT WHAT TO
DO.
SO, OUR DOWNSTREAM PATIENTS ARE SOMEWHAT PROTECTED OF WHAT WE
CALL THE SOLID TUMORS. LIKE THEY HAVE, LESS LIKELY TO BE
DIAGNOSED WITH BREAST RACIAL AND ETHNIC GROUPS WITHIN THE DOWN
SYNDROME COMMUNITY.
AND MY LAST SLIDE IS JUST TO SAY THANK YOU VERY MUCH FOR INVITING
ME TODAY. I HOPE THE FEW TIPS THAT I'VE BEEN ABLE TO SHARE OUR
INFORMATIVE AND HERE'S SOME QR CODES THAT YOU CAN USE TO LEARN
MORE ABOUT OUR CONFERENCE COMING UP.
AS WELL AS IF YOU WANT TO SHARE THE IMPLICIT BIAS INFORMATION
WITH ANYBODY IN YOUR COMMUNITY. AGAIN, ME, GRACIAS, AND THANK
YOU FOR HAVING ME.
THANK YOU SO MUCH, DR. RAMIREZ. EXCELLENT PRESENTATION. WE WILL
TAKE QUESTIONS AT THE END.
AND NOW AGAIN, TO REINTRODUCE OUR COMMUNITY REPRESENTATIVE.
OUR PARENT, DR. LISA TROER.
WHO IS A PROFESSOR AND CHAIR OF THE DEPARTMENT OF COMMUNICATION
ON THEATER ARTS AT CINCINNATI STATE TECHNICAL AND COMMUNITY
COLLEGE.
AT THE DOWN SYNDROME ASSOCIATION OF GREATER CINCINNATI, SHE ALSO
SERVES AS A LEADER OF THE AFRICAN AMERICAN.
FAMILY NETWORK AND SITS ON THE DIVERSITY EQUITY AND INCLUSION
COMMITTEE. NIETZSCHE IS ONE TO 3, INCLUDING JAYA, WHO HAS DOWN
SYNDROME.
AND LASTLY, A VERY IMPORTANT SPEAKER, MISS JAY AFROER, WHO IS
A RISING SEVENTH GRADER AND SWIMS WITH SPECIAL OLYMPICS.
OR WHERE SHE WON FIRST PLACE IN BACKSTROKE. IN SCHOOL HER
FAVORITE SUBJECT IS MATT. AND TODAY SHE WILL HELP US LEARN
ABOUT HER EXPERIENCES AS A RESEARCH PARTICIPANT.
SO, AMANDA, PLEASE PUT UP THE SLIDES FOR DR. THOR AND JAYA.
YOU READY?
NOW GET READY TO BE CAPTIVATED BY THE TRUE ROCK STAR OF OUR
WEBINAR. HOW ARE YOU TODAY, JAYA?
GREAT.
WONDERFUL. JAYA, CAN YOU TELL US A LITTLE BIT ABOUT YOURSELF? AND
YOUR EXPERIENCE IN TAKING PART IN DOWN SYNDROME RESEARCH.
YES, MY NAME IS JAYA. DO WELL. BE 12 ON FRIDAY.
WOW!
YOU'RE GOING, OKAY. WILL BE. 7, GO AHEAD.
PERSON, CAMERITY, BAYER.
ALRIGHT. SWIM TEAM CALLED THE CHAN VIEW SHARKS AT SAM WITH
I LIKE TO GO TO RIGHT.
I LIKE TO DANCE.
OKAY, I WILL JUST STUDY 2 USERS THOUGH.
SOMETIMES. IT WHAT? ALRIGHT. I WISH MY FIRST.
WE'RE THERE.
WELL, THAT'S WONDERFUL. THANK YOU FOR SHARING THAT WITH US AND
HAPPY EARLY BIRTHDAY TO YOU.
THANK YOU.
YEAH.
AND THANK YOU FOR PARTICIPATING IN RESEARCH. SO SOMETIMES IT'S A
LITTLE BORING. PEOPLE AROUND AND YOU JUST WISH YOUR FRIENDS WERE
THERE WITH YOU, RIGHT?
YEP.
WELL, YOU CAN INVITE THEM. PERHAPS IN THE FUTURE. YEAH.
WELL, HAPPY BIRTHDAY.
THANK YOU, AND I DON'T HAVE. HI DIGI.
YEAH.
YEAH, EVERYBODY'S SAYING HAPPY BIRTHDAY TO YOU. YEAH, DO YOU
SEE THAT? YEAH. OKAY, WELL THANK YOU FOR SHARING THAT.
LET'S GO. CAN WE PLEASE SEE THE NEXT SLIDE?
YEAH, WHAT KIND OF SUPPORT OR ACCOMMODATIONS DO YOU THINK WILL
BE HELPFUL? FOR YOU TO PARTICIPATE IN DOWN SYNDROME
RESEARCH.
BREAKS IF IT'S 2, MANY, ALRIGHT. 2.
OKAY. THAT'S A GOOD IDEA. SO PLAYING GAMES WILL MAKE IT A LOT
MORE FUN, RIGHT?
LISHA, WOULD YOU LIKE TO ADD SOMETHING TO THAT?
I THINK THAT WAS A GOOD POINT. DEFINITELY BREAKS ARE NEEDED IF
THERE'S A LOT OF QUESTIONS. I THINK TIME EVEN I UNDERSTAND
THAT RESEARCHERS, ALSO WANT TO GET HOME.
THEY HAVE A LIFE OUTSIDE OF WORK, BUT IT'S REALLY HARD TO DO
RESEARCH IN THE MIDDLE OF THE SCHOOL DAY.
SHE GETS OUT OF SCHOOL AT 30'CLOCK. SO IF SHE HAS AN
APPOINTMENT AT 3, I MAY NEED TO PICK HER UP EARLY FROM SCHOOL
AND THAT BE GET THAT BECOMES A BIT OF AN INCONVENIENCE.
ABSOLUTELY.
ALSO I THINK CHILDCARE WHEN AVAILABLE, ESPECIALLY WHEN
PEOPLE HAVE OTHER CHILDREN OR IF PARENTS ARE EXPECTED TO FILL OUT
SURVEYS WHILE THEIR CHILD IS PARTICIPATING IN RESEARCH, THEN
HAVING AVAILABLE CHILDCARE WOULD BE REALLY BENEFICIAL.
OKAY.
THAT IS TRUE. THANK YOU FOR SHARING THAT. AND NEXT SLIDE,
PLEASE.
OKAY.
YEAH, ARE THERE SPECIFIC AREAS OR TOPICS WITHIN THE RESEARCH
THAT YOU FIND INTERESTING OR FUN OR IMPORTANT.
YES, I WANT TO DRIVE. MY DAD. WOULD BE GOOD. OH, SO JAY IS
INTERESTED IN DRIVING.
OH!
SO WHAT I ANSWER. ABOUT RESEARCH. SHE SAYS SHE WANTED TO
DRIVE LIKE HER BIG BROTHERS.
ABSOLUTELY. AND YOU CAN DO IT. OH.
YEAH, THAT IS 22. US KEEPS IT. OKAY, HOLD ON. LET ME SAVE MY
PART.
OKAY, OKAY. SO IN TERMS OF RESEARCH FROM A PARENTAL
PERSPECTIVE. OKAY. SO IN TERMS OF RESEARCH FROM A PARENTAL
PERSPECTIVE, I THINK ANYTHING THAT WILL HELP JAYA LIVE HER
BEST LIFE. OKAY.
SO IN TERMS OF RESEARCH FROM A PARENTAL PERSPECTIVE, I THINK
ANYTHING THAT WILL HELP JAYA LIVE HER BEST LIFE, AND TO BE AS
INDEPENDENT AS POSSIBLE.
I THINK ANYTHING THAT WILL HELP JAYA LIVE HER BEST LIFE. WHICH
IS A GOOD THING. BUT WHAT I AM REALLY INTERESTED IN IS RESEARCH
DEALING WITH TECHNOLOGY FOR INSTANCE, ALEXA, ALEXA WAS
REALLY HELPFUL WHEN SHE HAD SURGERY BECAUSE SHE COULD CALL
ME ON THE LEXI.
I HAD TO RUN TO THE GROCERY STORE. SHE COULD CALL ME AND I
WOULD ANSWER IT ON MY PHONE OR VOICE TO TEXT.
SO IT WOULD BE REALLY NICE IF WHEN THEY MADE THAT TECHNOLOGY
THEY HAD PEOPLE WITH DOWN SYNDROME OR OTHER SPEECH
IMPEDIMENTS SO THAT THEY COULD GET USED TO THEIR VOICES.
CAUSE I THINK THAT WOULD HELP THEM LIVE. THEY'RE EXTRAORDINARY
LIVES OR TO DO GROCERIES OR BANKING.
ALSO, OBESITY, ESPECIALLY WITHIN THE DOWN SYNDROME COMMUNITY, I
AM CONVINCED THAT THERE IS SOME GENE THAT DOES NOT TELL THE WHEN
THEY'RE FULL.
I DON'T KNOW IF THAT'S A THING, BUT I WOULD LOVE TO KNOW IF IT
IS.
WE ARE HEADING INTO PUBERTY, SO THAT'S ALWAYS INTERESTING. AND
THEN FINALLY, ANYTHING THAT WOULD IMPROVE COMPREHENSION, I
THINK IS ALSO GONNA BE VERY BENEFICIAL.
ABSOLUTELY. IT'S VERY INTERESTING. THANK YOU FOR
SHARING THAT. NEXT SLIDE, PLEASE.
THAT'S FINE.
YEAH, CAN YOU SHARE ANY PAST EXPERIENCES YOU HAVE HAD WITH
RESEARCH STUDIES?
YES. THE FIRST STUDY. SO, SO, I WAS 10 YEARS OUT.
I WORK. WITH THE KHANA. TO US. NICE.
HAVE FUN. NEXT.
SHE ALSO GIVE. ME, A. HEY, SOMETIMES IT WAS. DO TAKE.
TO LOCK.
OKAY.
IT WAS HARD TO STAY AWAKE. GOOD. SO JAY'S FIRST RESEARCH FOR CISA
CHILDREN'S HOSPITAL.
THE RESEARCHER WAS WONDERFUL. IT WAS HARD FOR HER TO STAY AWAKE
BECAUSE SHE AT THAT TIME WASN'T SLEEPING WELL AND WOULD WAKE UP
IN THE MIDDLE OF THE NIGHT.
OH.
SO BY THE TIME WE GOT TO THE APPOINTMENT, SHE WAS EXTREMELY
TIRED. SO. THEY HAD TO KIND OF THINK OUTSIDE THE BOX AND FIGURE
OUT.
THE BEST WAYS TO KEEP HER ENGAGED.
THAT IS SO INTERESTING. AND, YEAH, SO YOU ENJOYED. IT'S MAX.
IT HELPED YOU STAY AWAKE.
YES.
THAT'S WONDERFUL. THAT'S GREAT. AND SHE WAS VERY NICE AS WELL,
RIGHT? YEAH, THAT'S WHAT.
YES, VERY GOOD. OKAY.
YES. AND I HAVE A B PASSBOOK GAME, HER, HER BEST FRIEND PINKY
IS IN THE SLIDE.
SO SHE THE BEST ANSWER.
OH THAT'S YOUR BEST FRIEND. WOW. IS SHE, IS SHE ON THE WEBINAR
RIGHT NOW? YOU DON'T KNOW.
YES, I DON'T. I DON'T THINK SO.
PROBABLY NOT. OKAY, THAT'S FINE. SHE CAN WALK THE RECORDING.
OKAY, NEXT SLIDE PLEASE.
OKAY.
YEAH, ARE THERE ANY CHALLENGES OR BARRIERS THAT MIGHT AFFECT
YOUR ABILITY TO PARTICIPATE IN RESEARCH?
YES, I KID. ALL RIGHT, GO.
YEAH, THAT IS TRUE. WE SHOULD LIKE TO EXPAND. YEAH.
YEP, SO I HOPE. YES. SO JAYA DID MISS SUMMER CAMP TODAY. SHE WAS
WILLING TO MISS IT TODAY.
OH, THANK YOU. THANK YOU FOR. I'M SORRY THAT YOU MISSED IT.
TO BE A PART OF THEIR RESEARCH. SO THAT WOULD BE SOMETHING THAT
WOULD, AFFECT HER PARTICIPATION.
I THINK. FOR ME, AS A PARENT OF MULTIPLE CHILDREN AND WORKING
FULL TIME, IT WAS HARD TO COMMIT TO THE LONGITUDINAL STUDIES.
SO I DO HAVE A DOCTORATE DEGREE. I UNDERSTAND THE IMPORTANCE OF
THEM. AND AT THE TIME THAT YOU COMMIT TO IT, IT'S FINE.
YEAH.
AND THEN LIFE HAPPENS AND ALL OF A SUDDEN YOU'RE SCHEDULE THAT
SEEMED CLEAR ISN'T ANYMORE. SO THAT IS A REAL CHALLENGE JUST
TRYING TO FIGURE OUT HOW TO MANAGE EVERYTHING.
SO THE OTHER CHALLENGE I THINK WHICH FORTUNATELY IS NOT AN
ISSUE FOR ME, THOUGH AGAIN IS THIS ISSUE OF TIME.
SO I AM FORTUNATE THAT I'M A PROFESSOR. I ONLY TEACH A
CERTAIN NUMBER OF DAYS A WEEK.
I CAN REARRANGE MY SCHEDULE IF NECESSARY, BUT NOT EVERYONE HAS
A SCHEDULE THAT FLEXIBLE. SO I THINK THAT COULD BE A BARRIER OR
WOULD BE A BARRIER FOR MOST PEOPLE.
YEAH.
MOST OF THE PEOPLE THAT WE KNOW ARE FRIENDS WOULD HAVE BEEN
UNABLE TO COMPLETE THE RESEARCH THAT JAY WAS IN BECAUSE THEY
WOULD HAVE REQUIRED THEM TO LEAVE WORK TO GO ACROSS TOWN.
IT JUST WOULD HAVE BEEN TOO MUCH.
YEAH. OKAY. WELL, THANK YOU FOR SHARING THAT.
NEXT SLIDE, PLEASE.
NEXT TIME UP. OKAY, THIS IS YOUR LAST ONE. SHE'S GONNA ASK YOU
THE QUESTION.
YEAH, HOW WILL YOU LIKE YOUR PARTICIPATION IN RESEARCH TO
HAVE A MEANINGFUL IMPACT ON THE DUMB SYNDROME COMMUNITY?
HI. GOOD. HELP PEOPLE WITH DOUBT. AND LIKE AND MY FRIENDS
LIKE ME AND MY FRIENDS.
OKAY.
ABSOLUTELY. ABSOLUTELY. GOOD JOB. THANK YOU SO MUCH, JEN.
THANK YOU.
YOU DID A WONDERFUL JOB. THANKS FOR MISSING CAMP FOR US. THANK
YOU FOR HELPING US. WE APPRECIATE IT.
THANK YOU. AND MY MOMMY IS GOING TO GIVE ME. I KNEW HE. I DID
PROMISE HER A TARGET TRIP AFTERWARDS.
OH, OUTSTANDING. WONDERFUL. HAVE FUN.
SO. THAT IS GOOD. HEY, AND MCDONALDS, YES.
MMM, WONDERFUL. THANK YOU.
YEAH, DEFINITELY. OKAY, VERY FIRST. OKAY, HOLD ON, YOU'RE
FINISHED.
THANK YOU. NOW WE'RE GONNA ASK YOUR MOMMY A FEW QUESTIONS,
OKAY? HEY, IT'S HER TURN NOW.
HI.
NO, SHE'S THE ROCK STAR.
. THAT OKAY.
THANKS.
OKAY. LISHA, HOW DO YOU FEEL ABOUT YOUR CHILD'S PARTICIPATION
IN DOWN SYNDROME RESEARCH AND WHAT EXPECTATIONS OR CONCERNS DO
YOU HAVE FOR HER PARTICIPATION?
SO I FEEL THAT IT'S AN ESSENTIAL, RIGHT? RESEARCH GETS
US TO THE NEXT LEVEL. IT HELPS US PROGRESS.
SO I UNDERSTAND HOW VITAL IT IS AND I ALSO UNDERSTAND THE
IMPORTANCE OF DIVERSE VOICES AS THE 2. PREVIOUS PRESENTERS
MENTIONED WHEN WE TALK ABOUT DIVERSE VOICES.
AS THE 2 PREVIOUS PRESENTERS MENTIONED, WHEN WE TALK ABOUT
DIVERSITY AND DIVERSE PERSPECTIVES, IT'S THE 2
PREVIOUS PRESENTERS MENTIONED WHEN WE TALK ABOUT DIVERSITY AND
DIVERSE PERSPECTIVES, IT'S NOT JUST RACE, IT'S ALSO COGNITIVE
ABILITY, IT'S SOCIOECONOMIC STATUS.
SO THERE ARE A LOT OF FACTORS TO CONSIDER. MY GOAL AS A PARENT IS
FOR JAYA TO LIVE HER BEST LIFE.
BUT IT'S NOT ONLY FOR JAYA TO LIVE HER BEST LIFE, RIGHT? IN
THIS COMMUNITY, WE HAVE MADE LIFE LONG FRIENDS, PEOPLE WHO
WILL GO OUT OF THEIR WAY FOR US AND WE WOULD DO THE SAME FOR
THEM.
SO IT'S IMPORTANT THAT WE DO WHAT WE CAN SO THAT THE ENTIRE
COMMUNITY IS ABLE TO PROGRESS. MY I DO HAVE CONCERNS WITH
RESEARCH ONE IS THAT THEORY AND PRACTICE ARE DIFFERENT.
IT'S SO AS RESEARCHERS, YOU CAN RESEARCH DOWN SYNDROME AND KIND
OF UNDERSTAND A CHECKLIST RIGHT OF WHAT DOWN SYNDROME IS OR SOME
WAYS TO BE.
TO HELP PEOPLE WITH DOWN SYNDROME, BUT THAT'S VERY
DIFFERENT THAN. BEING A PART OF THE COMMUNITY AND THE THEORY AND
PRACTICE ARE DIFFERENT.
AND THE REASON I MENTION THAT IS BECAUSE WHEN IT COMES TO A
RESEARCH DESIGN OR RESEARCH QUESTIONS. BEING A PART OF THE
COMMUNITY WILL HELP YOU AS YOU FIGURE OUT WHAT WHAT IS THE
INFORMATION ONE THAT THE COMMUNITY WANTS, RIGHT?
SO WHAT IS THE RESEARCH THAT THE PEOPLE IN THE COMMUNITY THINKS
IS VITAL. AND 2, WHAT IS THE BEST WAY FOR US TO GO ABOUT
DESIGNING THESE STUDIES.
AND AFTER YOU GET TO KNOW PEOPLE IN THE COMMUNITY, YOU MAY COME
UP WITH A DIFFERENT WAY TO DO THAT.
SO SOMETIMES WHEN I'M ANSWERING QUESTIONS, IT ALMOST FEELS LIKE
IT'S YOUR WORKING ON A DEFICIT MODEL BECAUSE THE QUESTIONS THAT
WE'RE ASKED BEING ASKED TO ANSWER.
ARE KIND OF BEING COMPARED AGAINST NEUROTYPICAL. CHILDREN,
RIGHT, OR YOUR TYPICAL PEOPLE WHO ARE AT GRADE LEVEL, WHATEVER
THAT REALLY MEANS.
INSTEAD OF JUST COMPARING THIS PARTICULAR COMMUNITY TO ITSELF,
IF THAT MAKES SENSE. AND SO IT'S REALLY HARD TO GO INTO IT
KNOWING THAT WE'RE BEING COMPARED TO A GROUP THAT IS NOT
LIKE US.
RIGHT? AND SO II WOULD LIKE TO SEE RESEARCH FOR US. WITH US AS
THE NORM, WITH PEOPLE WITH DOWN SYNDROME AS REALLY THE CENTRAL
PARTICIPANTS IN THE RESEARCH.
I THINK IT'S IMPORTANT TO ALSO THINK OUTSIDE OF THE BOX. LIKE
WHAT IS GONNA MAKE THE MOST SENSE?
SO WHEN JAYA WAS TALKING ABOUT SHAQUANA, JAYA WAS GETTING VERY
DISTRACTED.
SHE WAS TIRED AND SHE NOTICED THAT CHAKA HAD THIS PRETTY
LITTLE SCRUNCHY IN HER HAIR AND SO SHE SAID YOU KNOW NEXT TIME
I'LL BRING YOU A SCRUNCHY AND SHE DID SHE REMEMBERED AND SHE
DID IT.
RIGHT. THAT'S SMART.
SHE WAS VERY OPEN TO ACCOMMODATING US WITH BREAKS AND
SNACKS. SO I THINK BEING FLEXIBLE AND BEING WILLING TO DO
THINGS A LITTLE BIT DIFFERENT, UNDERSTANDING THAT IT STILL FITS
WITHIN THE CONFINES OF THE STUDY YOU'VE OUTLINED, BUT BEING
WILLING TO SAY I'M GONNA HAVE TO DO THINGS DIFFERENTLY, I THINK
IS BENEFICIAL.
SO I HAVE CONCERNS THAT SOMETIMES PEOPLE WILL BE SO
STRINGENT. THAT THEY WON'T MAKE THOSE ACCOMMODATIONS.
THAT IS TRUE. WELL, WE HAVE MANY RESEARCHERS RIGHT NOW ATTENDING
THIS. WEBINAR AND HOPEFULLY THEY'LL TAKE NOTES OF YOUR
SUGGESTIONS.
WONDERFUL. THANK YOU. NEXT SLIDE, PLEASE.
HOW CAN RESEARCHERS OR THE NH ENCOURAGE MORE FAMILIES FROM
YOUR COMMUNITY TO TAKE PART IN RESEARCH STUDIES?
SO I ALWAYS WANTED TO TELL PEOPLE ABOUT THE VERY BEST
RESEARCH STUDY I WAS EVER A PART OF. AND IT INCLUDED ALL OF THE
ITEMS THAT ARE LISTED ON THIS POWERPOINT SIDE.
I HAVE A FRIEND WHO IS A RESEARCHER AND SHE SAID WE WANT
TO DO RESEARCH ABOUT DOWN SYNDROME WE WANT TO MAKE SURE
THAT WE INCLUDE THE AFRICAN-AMERICAN COMMUNITY, WHAT
CAN WE DO?
SO I WENT BACK TO MY GROUP AS A BRIDGE AND I SAID, LISTEN, THERE
ARE SOME PEOPLE THAT WANT TO DO RESEARCH.
ARE YOU INTERESTED IN PARTICIPATING? WHAT IF WE ALL DO
IT TOGETHER? SO WHAT THEY DID IS THEY CAME TO OUR DOWN SYNDROME
ASSOCIATION'S OFFICE.
WE, CAME TOGETHER IN THE EVENING. WE HAD A BIG FOCUS
GROUP. SO PEOPLE WERE THERE WITH PEOPLE THAT THEY ALREADY KNEW OR
FELT COMFORTABLE WITH.
AND THEN THEY HAD A SEPARATE ROOM IN THE SAME BUILDING FOR
CHILDCARE. SO THAT PARENTS COULD PARTICIPATE AND THEIR CHILDREN
WERE IN ANOTHER ROOM BUT IN THE SAME BUILDING, THEY GAVE US
DINNER, THEY GAVE THE KIDS DINNER AND THEN THE COMPENSATION
WHICH I THINK WAS A GIFT CARD, BUT THEY GAVE IT TO US RIGHT
AWAY.
IT WASN'T SOMETHING WHERE WE HAD TO WAIT AROUND FOR IT. IT WAS, I
MEAN, IT WAS JUST EVERY ELEMENT OF A WONDERFUL.
RESEARCH PROJECT THAT WAS FLEXIBLE AND REALLY TOOK OUR
NEEDS INTO CONSIDERATION. AND SO I ABSOLUTELY LOVED IT. SO WHAT I
SAID HERE ABOUT NO POLITICAL AGENDA IS OFTENTIMES PEOPLE COME
TO OUR COMMUNITY SPECIFICALLY JUST TO TRY AND GET US TO
PARTICIPATE IN RESEARCH, BUT WE DON'T SEE THEM ANY TIME AFTER
THAT.
SO, DR. ANNA ESPSON FROM CINCINNATI CHILDREN'S HOSPITAL
DOES A REALLY GOOD JOB OF ENGAGING WITH OUR COMMUNITY AND
BEING A PART OF THE COMMUNITY SO THAT IT SHE DOES NEED
PARTICIPANTS FOR RESEARCH, PEOPLE ARE WILLING TO HELP
BECAUSE THEY KNOW HER AND WE FEEL THAT SHE SUPPORTS OUR
COMMUNITY OUTSIDE OF JUST NEEDING
RESEARCH. THE LAST THING I WOULD SAY IS THAT RESEARCH IS OFTEN
VERY ABSTRACT. SO I REMEMBER WRITING MY DISSERTATION AND ALL
THE RESEARCH ARTICLES I HAD TO DO AND I HAD TO READ AND I DO
NOT WANT TO READ ANY MORE RESEARCH ARTICLE, ANY MORE
JOURNAL ARTICLES.
BUT IF THERE IS RESEARCH FOR INSTANCE ON COGNITION OR
COMPREHENSION OR BEHAVIOR AND AFTER THE STUDY WAS COMPLETE IF
SOMEONE WOULD COME BACK TO ME WITH ONE PAGE THAT I COULD GIVE
TO JAY'S INTERVENTION SPECIALIST.
HERE IS HOW YOU CAN REALLY HELP JAYA OR SOME NOTES ON WHAT I
COULD SPECIFICALLY DO AT HOME.
HERE ARE 3 THINGS BASED ON OUR WORK WITH JAYA THAT YOU CAN DO
TO HELP HER COMPREHENSION AT HOME, THEN I WOULD FEEL MORE
CONNECTED TO THE RESEARCH.
SO.
THIS IS SO WONDERFUL. THANK YOU. THANK YOU. IT'S VALUABLE
INFORMATION THAT WE NEED TO HEAR FROM THE COMMUNITY AND THANK YOU
FOR SHARING THIS.
TO MAKE IT A BETTER EXPERIENCE AND FOR FAMILIES TO REALLY ENJOY
PARTICIPATING AND FEEL THAT THEY'RE PART OF IT AND THAT
THEY'RE GOING TO GET RESULTS FROM IT AFTERWARDS.
TRULY APPRECIATE IT. AND THANK YOU FOR YOUR PARTICIPATION AS
WELL TODAY. WE KNOW YOU'RE SO BUSY AND WE THANK YOU BOTH.
AND I, SEND IT BACK TO SJETA. DR.
YES, THANK YOU. BOTH TO THEISHA AND JAYA FOR THAT. WONDERFUL
INSIGHT.
SO NOW I WILL HAND IT BACK TO DR. MELISSA PARISI FOR CLOSING
AND AFTER THAT WE WILL DO OUR Q&A.
THANK YOU VERY MUCH FOR AN OPPORTUNITY TO. TRY TO WRAP
THINGS UP AND WE'VE HAD A REALLY RICH DISCUSSION SO FAR THIS
AFTERNOON AND I DON'T WANT TO TAKE A LOT OF TIME TO PROLONG
THINGS BECAUSE I REALLY WANT THERE TO BE SOME OPEN QUESTION
AND ANSWERS, BUT I WOULD REALLY LIKE TO FIRST OF ALL THANK
OUR EXCELLENT SPEAKERS. WE HEARD FROM DR. KAREEM WATSON AND THE
ALL OF US RESEARCH PROGRAM ABOUT NEEDING TO MOVE AWAY FROM ABOUT
NEEDING TO MOVE AWAY FROM THE ONE SIZE FITS ALL MENTALITY.
FOR RESEARCH TO REALLY PROMOTE DIVERSITY AND INCLUSION. THE
FACT THAT THAT RESEARCH ENDEAVOR, THE ALL OF US PROGRAM
IS REALLY TRYING TO ENSURE THAT OVER 75% OF THE PARTICIPANTS.
COME FROM POPULATIONS THAT ARE UNDERREPRESENTED IN BIOMEDICAL
RESEARCH IS REALLY KEY AND HE EMPHASIZED THE IMPORTANCE OF
TRUST.
AND RELATIONSHIP BUILDING TO REALLY DEVELOP THOSE ALLIANCES,
THOSE PARTNERSHIPS THAT WILL ENHANCE THE ABILITY TO ENSURE
THAT POPULATIONS FEEL LIKE THEY'RE A PART OF THE RESEARCH.
AND THAT THEY CAN BE INCLUDED. HE TALKED ALSO ABOUT
INTERSECTIONALITY AND THE IMPORTANCE OF PARTICIPANT IN
AMBASSADORS AND KEEPING IN MIND THAT, YOU KNOW, WE CAN'T
PIGEONHOLE PEOPLE INTO JUST ONE CATEGORY OR ANOTHER BECAUSE
PEOPLE ARE MUCH MORE COMPLICATED THAN THAT AND THEY MAY HAVE
MULTIPLE AREAS WHERE THEY ARE UNDERREPRESENTED AND ALL OF
THOSE NEED TO
BE ACKNOWLEDGED. AND HE ALSO REMINDED US ABOUT THE IMPORTANT.
THEME AND MOTTO OF NOTHING ABOUT US WITHOUT US, WHICH I THINK IS
SOMETHING THAT WE ALL WANT TO KEEP IN MIND AS WE TRY TO CREATE
DIVERSE RESEARCH PROGRAMS.
DR. EMILY RAMIREZ FROM UT HEALTH SYSTEM IN SAN ANTONIO. ALSO
TALKED TO US SPECIFICALLY ABOUT HER EXPERIENCES TRYING TO
INCREASE PARTICIPATION OF THE LATINO POPULATION IN RESEARCH
SPECIFICALLY RELATED TO CANCER.
CLINICAL TRIALS. AND SHE REMINDED US THAT ALTHOUGH THE
LATINO POPULATION REPRESENTS 19% OF THE US POPULATION, ONLY 4% OF
FDA DRUG TRIALS AND 10% OF NATIONAL CANCER INSTITUTED
SPONSORED CLINICAL TRIALS.
INCLUDE PEOPLE WHO ARE LATINO. AND SO THERE ARE MANY BARRIERS
TO PARTICIPATION, BUT DR. RAMIREZ SHARED WITH US.
SOME OF THE REALLY IMPORTANT STRATEGIES THAT THEY ARE TAKING.
IN, TEXAS TO TRY TO BOOST PARTICIPATION IN MANY OF THESE.
STUDIES AND THE IMPORTANCE OF NOT JUST HAVING AWARENESS
RAISING, BUT ALSO TO REALLY ENGAGE TO INFORM THOSE CHOICES
THROUGH ONLINE RESOURCES SUCH AS VIDEOS.
BOOKLETS, PATIENT NAVIGATORS, AND A WHOLE VARIETY OF
MULTIDISCIPLINARY SOCIAL MEDIA AND OTHER TYPES OF APPROACHES TO
REALLY ENCOURAGE PARTICIPATION.
THROUGH THE SAHOUD AMERICA MODEL AND OTHERS. AND THEN FINALLY, I
WANNA THANK. ARE REPRESENTATIVES FROM THE DOWN SYNDROME COMMUNITY
WHO HAVE PARTICIPATED IN RESEARCH, DR.
LISHA THROWER AND HER DAUGHTER JAYA AND I'M GOING TO ADD MY
EARLY HAPPY BIRTHDAY WISHES TO JAYA AS WELL SINCE FRIDAY IS HER
TWELFTH BIRTHDAY.
IT WAS REALLY NICE TO HEAR FROM YOU ABOUT YOUR PERSPECTIVES ON
PARTICIPATING IN RESEARCH. FROM BOTH OF YOU AND JAYA, YOU KNOW,
IT'S NOTHING LIKE HEARING STRAIGHT FROM THE PERSON WHO HAS
BEEN DOING THE RESEARCH AND SAYING, YOU KNOW, MAKE SURE THAT
WE HAVE BREAKS.
AND MAKE SURE THAT, YOU HELP MAKE, HELP ENSURE THAT MY
FRIENDS ARE ALSO PARTICIPATING AND IN ACCOMMODATING WORK AND
SCHOOL SCHEDULES AND WE'RE GRATEFUL THAT YOU TOOK TIME OUT
OF YOUR SUMMER CAMP TODAY TO COME JOIN US ON THIS WEBINAR.
AND DR. THROWER, YOUR PERSPECTIVES AS BOTH A MOM AND A
RESEARCHER I THINK ARE VERY INSIGHTFUL.
YOU KNOW, WHAT IS IT THAT WE THINK IS VITAL REALLY NEEDS TO
ALSO COME FROM THE COMMUNITY. WE NEED TO MAKE SURE THAT WE
ACKNOWLEDGE AND WE, RESPECT PEOPLE'S BUSY LIVES AND THEIR
BUSY SCHEDULES AND WE DO EVERYTHING IN OUR POWER TO
ENSURE THAT THEY CAN PARTICIPATE IN RESEARCH.
SO MY FINAL WORDS ARE THANK YOU AGAIN FOR OUR SPEAKERS. WE'VE
REALLY ENJOYED HEARING YOUR WORDS OF WISDOM.
THANK YOU TO OUR PARTICIPANTS, FAMILIES, INVESTIGATORS, AND
MEMBERS OF THE DOWN SYNDROME COMMUNITY AS WE EMBARK UPON OUR
CONTINUED NEXT 5 YEARS OF THE INCLUDE RESEARCH PROGRAM WE
REALLY WE'LL CONTINUE TO EMPHASIZE DIVERSITY.
INCLUSION, EQUITY, AND ACCESSIBILITY. AND WE WILL
APPRECIATE HEARING FROM ALL OF YOU ALONG THE WAY TO MAKE SURE
THAT WE GET IT RIGHT.
A FINAL THANKS TO OUR ASL AND SPANISH INTERPRETERS AND ALSO TO
THE EXCELLENT TEAM FROM THE NIH AND FROM PALLADIAN PARTNERS WHO
ORGANIZED THIS WEBINAR.
SO STAY TUNED FOR FUTURE OPPORTUNITIES TO PARTICIPATE IN
DE IA A WEBINARS UNDER THE AUSPICES OF THE INCLUDE PROJECT
AND WITH THAT I WILL TURN IT OVER FOR QUESTIONS AND ANSWERS.
THANK YOU.
THANK YOU, DR. PERISI. SO WE HAVE ABOUT 10 MIN FOR QUESTIONS
AND ANSWERS. SO PLEASE, PUT IT IN THE CHAT, PUT YOUR QUESTIONS
IN THE CHAT.
YOU CAN ALSO, RAISE YOUR HAND AND ASK YOUR QUESTIONS OF THE
SPEAKERS. AND, WHILE THOSE ARE COMING IN, I WOULD JUST, LIKE
TO, I SAW VALERIE COTTON ADDED A QUESTION IN THE CHAT FOR DR.
WATSON ABOUT HOW MANY INDIVIDUALS WOULD DOWN SYNDROME
ARE IN THE ALL OF US DATA AND I KNOW THAT DR.
TRACY ROSSER ANSWERED IT AND JUST TO COMMENT THAT IT'S WE DO
HAVE A REGISTRY FOR INDIVIDUALS WITH DOWN SYNDROME.
CALL DS CONNECT AND IF THERE ARE WAYS FOR US TO PARTNER AND SEND
OUT NOTIFICATION TO.
AND IF THERE ARE WAYS FOR US TO PARTNER AND SEND OUT
NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS CONNECT SEND
OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TSIPRAS AND
SEND OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS
CONNECT ABOUT THE ALL OF US RESEARCH FOR US TO PARTNER AND
SEND OUT NOTIFICATION TO THE 5,000 PLUS PARTICIPANTS ON TS
CONNECT ABOUT THE ALL OF US RESEARCH
STUDY
SO, I SEE A QUESTION FOR, DR. THROWER. FROM MARIANNE ELLEN.
DO YOU WANT TO UNMUTE AND ASK IT YOURSELF OR DO YOU WANT ME TO
READ IT?
SURE. I LOVED, HER SUGGESTION THAT MAYBE WE NEED TO BE TALKING
TO THE COMMUNITY MORE.
OKAY.
I WAS JUST WONDERING YOU MENTIONED OBESITY TO BEING ONE
OF THE THINGS YOU'RE CONCERNED ABOUT IF YOU FEEL LIKE IT'S VERY
SIMILAR IN THE DOWN SYNDROME COMMUNITY TO THOSE OUTSIDE OF
THE DOWNTOWN COMMUNITY OR DO YOU FEEL LIKE IT'S REALLY DIFFERENT?
IT FEELS DIFFERENT TO ME. AGAIN, THAT WOULD BE WONDERFUL TO KNOW
THOUGH IF, HOW IS IT IN THE NEUROTYPICAL COMMUNITY AND THE
DOWN SYNDROME COMMUNITY.
I JUST OFTEN WONDER, AND THIS IS FROM HEARING OTHER PARENTS TALK.
ABOUT THEIR CHILDREN WITH DOWN SYNDROME.
IS THERE SOMETHING THAT'S NOT LETTING THEM KNOW THAT THEY'RE
FULL? BUT THEN ALSO, SO IT'S NOT JUST THAT, BUT IT'S.
PERHAPS BECAUSE A LOT OF PEOPLE WITH DOWN SYNDROME MAY HAVE
MOBILITY ISSUES. OR LOW MUSCLE TONE, RIGHT?
I KNOW MY DAUGHTER HAS HAD A LOT OF ISSUES. SHE ACTUALLY JUST HAD
SURGERY ON HER FOOT IN MARCH AND SHE'LL DO THE LEFT FOOT.
NEXT YEAR SO THAT PREVENTS HER FROM BEING AS ACTIVE FROM
WALKING AS LONG SO EVEN IF THEY'RE EATING THE SAME AMOUNT
BECAUSE OF THE EXERCISE. MAYBE THAT'S IT.
I DON'T KNOW. BUT IF YOU ALL CAN RESEARCH THAT, A LOT OF US WOULD
BE VERY, VERY APPRECIATIVE.
I'D LIKE TO JUST ADD THAT YOU KNOW OBESITY IS YOU KNOW
CRITICAL ISSUE FOR MANY OF OUR CHILDREN.
YOU KNOW A CRITICAL ISSUE FOR MANY OF OUR CHILDREN. YOU KNOW
ALREADY LIKE 30% OF OUR HISPANIC CHILDREN BETWEEN THE AGES OF 2
AND 19 ARE ALREADY OVERWEIGHT OR OBESE.
SO, SOMETHING THAT WE COULD CERTAINLY. ADDRESS AS A NATIONAL
ISSUE. YOU KNOW, IT HAS BEEN LOOKED AT, BUT THEN TO LOOK AT
SPECIFIC AREAS FOR, DOWN TO CHILDREN WITH DOWN SYNDROME.
THANK YOU, DR. RAMIREZ. I HAD A QUESTION FOR DR. WATSON.
I WAS REALLY, INTRIGUED TO SEE YOUR MOBILE ENGAGEMENT ASSET.
CAN YOU ELABORATE A LITTLE BIT ABOUT.
WHAT IT ENTAILS AND WHAT RESOURCES ARE PART OF THIS
ASSET.
THANK YOU SO MUCH FOR THAT QUESTION, DR. BYRNE. WE WORK
WITH, WITH MINTAGE MARKETING COMMUNITY TO HELP US DEVELOP OUR
MOBILE ENGAGEMENT ASSET.
AND WE ALSO WORK WITH AMERICAN ASSOCIATION HEALTH AND
DISABILITY TO THINK ABOUT ACCESSIBILITY FOR OUR MOBILE
ENGAGEMENT ASSET AND IT'S REALLY OUR WAY OF ADDRESSING THIS ISSUE
OF ACCESS FOR ENGAGING IN RESEARCH.
AND AS DR. THORA MENTIONED, SO OFTEN WE EXPECT FOR FAMILIES AND
PARENTS TO COME TO US.
BUT WHAT WE'VE TRIED TO DO IS THINK ABOUT HOW CAN WE GO TO
WHERE COMMUNITIES AND FAMILIES ARE THINKING ABOUT RURAL
COMMUNITIES.
ALSO IS TRYING TO ADDRESS THAT WE CALL IT A RESEARCH GAP
BECAUSE MOST UNFORTUNATELY MOST RESEARCH STUDIES HAPPEN IN
ACADEMIC MEDICAL CENTERS THAT OFTEN ARE NOT IN THE GEOGRAPHIC
LOCATIONS WHERE A LOT OF HEALTH DISPARITIES TAKE PLACE.
SO WHAT OUR MOBILE ENGAGEMENT ASSET DOES, IT'S A LARGE MOBILE
VAN THAT SOME OF THEM ARE EQUIPPED FOR PEOPLE LIVING WITH
DISABILITIES AND OTHER THINGS TO ALLOW US TO TAKE THE MESSAGE TO
THE COMMUNITY.
IT'S NOT JUST EVEN TO ALLOW US TO TAKE THE MESSAGE TO THE
COMMUNITY. IT'S NOT JUST EVEN ALL ABOUT ENROLLMENT.
IT'S ALSO ABOUT, IT'S NOT JUST EVEN ALL ABOUT ENROLLMENT. IT'S
ALSO ABOUT, AWARENESS OF THE IMPORTANCE OF GENOMIC STUDIES.
IT'S ALSO ABOUT AWARENESS OF THE IMPORTANCE OF GENOMIC STUDIES.
GETTING PEOPLE FAMILIAR WITH IT.
SOMETIMES IF YOU'RE IN THE CLINIC SETTING AND THE
IMPORTANCE OF GENOMIC STUDIES. GETTING PEOPLE FAMILIAR WITH IT.
SOMETIMES IF YOU'RE IN THE CLINIC SETTING, GETTING PEOPLE
FAMILIAR WITH IT. SOMETIMES IF YOU'RE IN THE CLINIC SETTING AND
THAT'S THE FIRST TIME YOU APPROACH ABOUT PARTICIPATING IN
A TRIAL, THAT MAY NOT BE THE RIGHT TIME.
BUT IF YOU CAN GO TO THE MOBILE ENGAGEMENT ASSET, LEARN ABOUT
THE IMPORTANCE OF GENOMIC RESEARCH, LEARN WHAT A CONSENT
PROCESS, THE CONSENT PROCESS LOOKS LIKE AND WHAT WE'VE TAKEN
FOR DATA COLLECTION THAT MAY ENGAGE COMMUNITY MEMBERS TO
BEGIN TO BUILD THAT RELATIONSHIP TO PARTICIPATE.
AND I CAN PROVIDE MORE INFORMATION FOR THE PROGRAM TO
SEND THAT OUT TO YOUR COMMUNITY ABOUT WHERE AND WE KEEP A LIST
OF WHERE THE MOBILE ENGAGEMENT ASSET IS GONNA BE THROUGHOUT THE
COUNTRY
THAT WOULD BE FABULOUS. THANK YOU SO MUCH. SO I SEE THAT DR.
ESPINOSA HAS HIS HAND UP.
PLEASE ON NEWTON ASK YOUR QUESTION.
HI, SUZETTE. I'VE BEEN ABIDING MY TONGUE. HEARING LISA TALK
ABOUT THE IMPORTANCE OF MORE RESEARCH.
ABOUT OBESITY AND APPETITE CONTROLLING THAT SYNDROME. LISHA
IS HAPPENING. OKAY.
WE'RE AWARE OF THE NEED FOR MORE RESEARCH ON THIS. THERE ARE MANY
LARGE COVER STUDIES NOW OF INDIVIDUALS WITHIN SYNDROME THAT
ARE TAKING, BODY MAX INDEX MEASUREMENTS AND TRACKING.
YOU KNOW, THE OVERWEIGHT PHENOTYPE TO OTHER.
CHARACTERISTICS BOTH IN TERMS OF COHERENT CONDITIONS AND ALSO THE
THE PHYSIOLOGY OF PEOPLE WITHIN SYNDROME, BUT I'M REALLY
FASCINATED BY THE FACT THAT YOU AND OTHERS SUPPORT A NOTION OF A
LOSS OF APPETITE CONTROLLING THOSE SYNDROME.
WHICH COULD BE TIED IN OUR UNDERSTANDING TO THE SLEEP
DISTURBANCES. WHEN YOU HAVE, WHEN YOU HAVE, WHEN YOU ARE NOT
A SLEEPING WELL, THE MECHANISMS THAT HELP YOU CONTROL APPETITE.
THE HORMONE LEPTIN. EXAMPLE, BECOME THIS REGULATED. SO
EVERYTHING IS CONNECTED. NORMALIZING IS LEAP.
DOING THE I MAY HELP WITHOUT APPETITE CONTROL DURING THE DAY.
I LOOK FORWARD TO SHARING MORE OF THIS RESEARCH WITH YOU AND
THE REST OF THE COMMUNITY IN THE YEARS AHEAD.
THANK YOU FOR YOUR WORK.
SO I HAVE A QUESTION FOR DR. RAMIREZ. SO YOU MENTIONED THAT,
YOU CONDUCTED SEVERAL FOCUS GROUPS TO UNDERSTAND BARRIERS.
AND I KNOW YOU TOUCHED UPON A FEW OF THEM. WOULD YOU LIKE TO
ELABORATE, ESPECIALLY IN THE LATINO COMMUNITY AND
PARTICIPATING IN OUR RESEARCH AND AND, ONE COMMENT IS THAT WE,
THE REGISTRY THAT WE HAVE, DS CONNECT, ALTHOUGH IT'S
TRANSLATED IN SPANISH, IT'S BEEN HARD TO GET FAMILIES
TO, YOU KNOW, BE PART OF THAT RESOURCE AND OUT OF, ABOUT 5,400
FAMILIES, LESS THAN 50 FAMILIES ARE ON THE REGISTRY.
WOULD REALLY LIKE TO LEARN SOME OF THE BARRIERS THAT YOU HAVE.
DISCOVERED AS PART OF YOUR FOCUS GROUP IN YOUR COMMUNITY.
WELL, YOU KNOW, PART OF IT WAS THE EMPHASIS THAT WE SAID ON
EDUCATION BECAUSE OFTENTIMES OUR COMMUNITIES FEEL THAT CLINICAL
TRIALS ARE PARTICIPATING IN ANY KIND OF A STUDY IS THAT THEY'RE
BEING USED AS A GUINEA PIG.
YOU KNOW, AND THAT IS VERY PREVALENT IN THEIR MINDS AND
JUST EVEN THE WORD CLINICAL TRIAL. TRIAL IN ENGLISH IS LIKE
YOU'RE GOING TO COURT, YOU KNOW, YOU'RE GOING TO, SO WE TRY TO
USE MORE CLINICAL STUDIES, YOU KNOW, WHERE WE'RE WANTING TO
LEARN MORE THAT'S BOTH BENEFICIAL AND IS
IMPORTANT. WE ALSO STRESSED THE NEED FOR BIDIRECTIONAL
COMMUNICATION. THERE WAS, YOU KNOW, DR.
THROWER WAS MENTIONING THE NEED TO SUMMARIZE SOME OF THE THINGS
THAT WE LEARN IF YOU KNOW JUST AS MUCH AS WE WE ASK OUR
COMMUNITY FOR INPUT WE NEED TO SHARE BACK WHAT WE'VE LEARNED
AND A SIMPLISTIC WAY IN THAT WHOLE NEED FOR BIDIRECTIONAL
COMMUNICATIONS IS EXTREMELY IMPORTANT.
TO CREATE THE TRUST THAT WE'RE TRYING TO BUILD NOT ONLY WITH
OUR PARTICIPANTS BUT TO BE ABLE TO GROW THAT BECAUSE IF THEY
FEEL COMFORTABLE THEN THEY'RE WILLING TO SHARE WHAT WE'RE
SHARING WITH THEM WITH OTHERS AND YOUR LEARNING COMMUNITY YOU
KNOW BEGINS TO GROW.
THANK YOU.
SO THOSE ARE JUST A FEW OF THE THINGS THAT WE FELT WERE
EXTREMELY IMPORTANT. AND THEN WE'RE PUTTING TOGETHER SOMETHING
CALLED DESIGN STUDIOS WORKING WITH OUR RESEARCHERS AGAIN GOING
BACK TO WHAT DR.
THROWER WAS SAYING, YOU KNOW, OUR RESEARCHERS NEED TO HEAR
WHAT THE COMMUNITY THINKS BEFORE THEY FINALIZE THEIR RESEARCH
DESIGN.
AND SO WE'RE JUST NOW BEGINNING TO EXPLORE THAT. I KNOW IT'S
BEEN USED IN OTHER PLACES BUT NOT NECESSARILY WITHIN THE
LATINO COMMUNITY.
SO WE'RE LOOKING FORWARD TO THAT AND SEE WHAT WE LEARN.
YES, EXCELLENT. AND AS INCLUDE ALSO HAS A COMMUNITY BASED
PARTICIPATORY RESEARCH INITIATIVE ON THE ROAD. SO AS
DR.
WATSON POINTED OUT AS WELL AS YOURSELF AND HEARING FROM DR.
THR THAT CBPR APPROACHES.
TO DESIGNING STUDIES IS SPENT. AND VERY IMPORTANT TO ENGAGE.
DIVORCE PERSPECTIVES. SO, ARE THERE ANY MORE QUESTIONS?
WE ARE JUST AT 2 28 AND BEING RESPECTFUL OF EVERYONE'S TIME.
FINAL CALL FOR ANY QUESTIONS. LINDA, WERE THERE ANY QUESTIONS
IN THE SPANISH INTERPRETATION ROOM?
LET ME JUST CHECK REAL QUICK. WILL THE INTERPRETERS LET US
KNOW IF THERE ARE ANY QUESTIONS PLEASE IN SPANISH?
CAN I MAKE ONE ANNOUNCEMENT ABOUT THE INCLUDE PROJECT?
SURE, MELISSA, GO AHEAD.
SO I JUST WANT TO LET EVERYONE ON THIS CALL KNOW THAT THE
INCLUDE PROJECT WHICH IS JUST BEEN IN EXISTENCE FOR 5 YEARS
AND WE ARE PLANNING FOR OUR NEXT CYCLE TO HAVE A LARGE COHORT
STUDY TO FOLLOW PEOPLE ACROSS THE LIFESPAN WITH DOWN SYNDROME
LONGITUDINALLY AND LEARN MORE ABOUT WHAT IT'S LIKE TO LIVE
WITH
DOWN SYNDROME AND IT'S ABSOLUTELY ESSENTIAL THAT WE
HAVE DIVERSE REPRESENTATION INTO THE STUDY. SO WE HOPE THAT AS
YOU HEAR MORE ABOUT THIS PROGRAM AND AS IT LAUNCHES IN THE NEXT
COUPLE YEARS THAT YOU WILL CONSIDER PARTICIPATING AND BEING
A PART OF THIS COHORT PROJECT.
THANK YOU.
LINDA, WERE THERE ANY MORE QUESTIONS IN THE SPANISH?
IF.
LET ME CHECK REAL QUICK. I LOOK AT THE CENTRAL ESTABLISHED,
SPANNER.
AND IF WE DIDN'T GET TO YOUR QUESTION, PLEASE SEND IT TO US.
WE WILL BE ABLE TO RESPOND TO YOU A RECORDING OF THIS WEBINAR
WILL BE POSTED PUBLICLY ON THE INCLUDE WEBSITE.
ONCE AGAIN, THE INCLUDE TEAM WOULD LIKE TO THANK. ALL THE
SPEAKERS, ESPECIALLY, JAYA FOR MISSING HER CAMP FOR OUR SERIES.
I WOULD ALSO LIKE TO. THANK THE INCLUDE DI. WORKING GROUP AND
ALL OF THEIR RIGHT STAFF.
THANK YOU ALL AND THANK YOU AMANDA. FOR YOUR HELP PUTTING
THIS WEBINAR SERIES. HAVE A GOOD REST OF YOUR DAY. 1388 01:23:18,560 THANK YOU