>>WELCOME, EVERYONE FOR THIS
ACT 2 OF THE VIRTUAL WORKSHOP,
BUILDING A DIVERSE COMMUNITY FOR
DOWN SYNDROME RESEARCH.
I'M A BURD I'M LINDA BURHANSSTI.
I'M WE HEARD YESTERDAY FROM
FAMILIES AND RESEARCHERS ABOUT
THE IMPORTANCE OF DIVERSIFYING
RESEARCH TEAMS AND THE
PARTICIPANTS.
THE THREE SESSIONS WILL FOCUS ON
LEARNING FROM OTHER PROGRAMS OF
THEIR PROCESS OF ENGAGING AND
RETAINING DIVERSE COMMUNITIES
FOR RESEARCH.
EACH SESSION MODERATOR WILL
INTRODUCE THE SPEAKERS AND WE
WILL HAVE DISCUSSION AT THE END
OF EACH SESSION.
THERE WILL BE TWO BREAKS BETWEEN
THE SESSIONS AS WELL.
NEXT SLIDE, PLEASE.
THIS SESSION IS BEING RECORDED.
PLEASE MUTE YOUR MICROPHONE
UNLESS YOU'RE SPEAKING.
YOU'RE FREE TO USE THE CHAT
FUNCTION TO ASK A QUESTION OR
PROVIDE ANY COMMENT.
FOR THOSE WHO WISH TO SPEAK AND
ALSO THE SPEAKERS, PLEASE TURN
ON YOUR VIDEO WHEN ASKING A
QUESTION OR SPEAKING.
WE ARE ALSO PLEASED TO BE
PROVIDING LIVE SIMULTANEOUS
SPANISH INTERPRETATION.
PLEASE, FOR THE SPEAKERS,
REMEMBER TO SPEAK SLOWLY AND FOR
THE ATTENDEES, YOU CAN SEE A
GLOW AT THE BOTTOM OF YOUR
SCREEN THAT SAYS,
INTERPRETATION, AND YOU CAN
SELECT THAT GLOBE FOR LISTENING
IN ENGLISH.
AND FOR THOSE WHO WOULD LIKE TO
LISTEN?
ANY OTHER LANGUAGE THAN ENGLISH
AND SPANISH, YOU CAN USE THE
LIVE TRANSCRIPT AGAIN AT THE
BOTTOM OF YOUR SCREEN.
[ SPEAKING SPANISH ]
SO THE LISTENING SESSION
SUMMARIES WE CONDUCTED BAY IN
MAY OF 2022 WILL BE HOSTED ON
THE INCLUDE WEBSITE AS WELL AS
ANONYMIZED SUM RYE OF THIS
WORKSHOP -- SUMMARY OF THIS
WORKSHOP AND THE VIDEOCAST
RECORDING.
ALSO THE DS CONNECT WEBSITE IS
HERE.
NEXT SLIDE, PLEASE.
I WOULD LIKE TO ACKNOWLEDGE THE
DOWN SYNDROME CONSORTIUM AS WELL
AS THE NIH DOWN SYNDROME WORKING
GROUP.
NEXT SLIDE, PLEASE.
AND OUR INCLUDE LEADERSHIP TEAM,
DR. TABAK, BIANCHI AND GIBBONS.
NEXT SLIDE, PLEASE.
CONDUCTING THIS VIRTUAL WORKSHOP
FEELS LIKE IT'S A BROADWAY SHOW
WHERE ALL MEMBERS HAVE KEY ROLES
IN THE PRODUCTION, ORGANIZATION,
SHOW TIME.
EVERYTHING HAS TO BE IN SYNC.
A HUGE GRATITUDE TO THE PLANNING
COMMITTEE, ESPECIALLY MY
COLLEAGUE AND COLLEAGUE OF THIS
WORKSHOP MA SEE YA GARCIA.
THE OFFICE OF THE DIRECTOR TEAM
IS HERE WITH SUPPORT OF SPEAKERS
AND ATTENDEES.
WITHOUT FURTHER ADIEU, LET ME
INTRODUCE DR. AUSTIN TIN OPENING
THE SECOND DAY WITH THE OPENING
REMARKS --
>> AUSTIN SIN.
IN 1999 HE WAS THE DIRECTOR OF
THE HHS OFFICE OF MINORITY
HEALTH.
HE HAS A LONG AND DISTINGUISHED
CAREER AND HIS DETAILED BIO IS
ON THE WORKSHOP HOMEPAGE.
WELCOME DR. STINSON.
>> THANK YOU.
WE HAD SELF ADVOCATES, FAMILIES
AND RESEARCHERS YESTERDAY, ON
HOW TO ENGAGE THE COMMUNITY THEY
REPRESENT AND ALSO HOW TO
LEVERAGE SOME RESOURCES WITHIN
NIH SUCH AS THE JOINT INITIATIVE
BETWEEN NHLBI AND NIMHD, A
COMMUNITY ENGAGEMENT ALLIANCE
PRESENTED BY DR. ELIAS.
WE ALSO HEARD ABOUT EFFORTS BY
NIH TO IMPLEMENT POLICIES ON
INCLUSION IN CLINICAL STUDIES
ACROSS THE LIFESPAN.
DR. ROSIER GAVE US MUCH FOOD FOR
THOUGHT DISCUSSING HOW RACE AND
ETHNICITY PLAYS AN IMPORTANT
ROLE IN OUR MEDICAL OUTCOMES,
ESPECIALLY FOR UNDER REPRESENTED
GROUPS IN BIOMEDICAL RESEARCH
AND WHY IT'S IMPORTANT TO BE
INCLUSIVE.
DOCTORS KELLY AND MILLER LED AN
OUTSTANDING PRESENTATION ON
ASCENTING AND CONSENTING, AND
HOW WE CAN LEVERAGE TECHNOLOGY
AND VARIOUS SOCIAL MEDIA TO
CONDUCT THE PROCESS.
THE FINAL PRESENTATION FROM
NHLBI'S DR. BROWN, HIGHLIGHTED
THE IMPORTANCE OF SLEEP AND THE
GAPS IN RESEARCH NEEDED IN THE
SPACE OF SLEEP HEALTH
DISPARITIES IN PERSONS LIVING
WITH AL SYNDROME ACROSS THE
LIFESPAN.
THE THREAD THAT WAS WOVEN
THROUGH ALL THESE PRESENTATIONS
IS ABOUT THE IMPORTANCE OF
COMMUNITY ENGAGEMENT.
AND THE IMPORTANCE IN TREATING
THE COMMUNITY WITH RESPECT AND
LISTENING TO THE WISDOM FROM THE
COMMUNITIES AS WE THINK ABOUT
RESEARCH THAT WOULD BE
BENEFICIAL TO INDIVIDUALS LIVING
WITH DOWN SYNDROME.
IN FACT, IT'S NOT LIKELY TO BE
SUCCESSFUL IF WE DON'T LISTEN TO
THE COMMUNITY.
SO I'M LOOKING FORWARD TO THIS
SECOND DAY OF THIS VERY, VERY
IMPORTANT WORKSHOP.
NOW I'D LIKE TO TURN THE NEXT
SESSION OVER TO MY COLLEAGUE,
DR. LEY, WHO SERVES AS THE
PROJECT SCIENTIST INCLUDE DATA
COORDINATING CENTER AND OVERSEES
THE DEVELOPMENT OF THE INCLUDE
DATA HUB AND OTHER DATA
COORDINATING CENTER-RELATED
ACTIVITIES.
DR. LEY.
>> THANK YOU IT'S MY GREAT
PLEASURE TO INTRODUCE OUR
SESSION SPEAKERS.
FIRST I WANT TO THANK ALL THE
SPEAKERS FOR SESSION 4.
THE TOPIC IS ENSURING
REPRESENTATION IN THE DOWN
SYNDROME SCIENTIFIC WORKFORCE
AMONG INVESTIGATORS AND
TRAINEES.
WE HAVE JOINING US TODAY, SUJATA
BARDHAM, DR. YONG LI, DR. LON
LON AND DR. JIANHUA WU.
FOR THE INTEREST OF TIME, I WILL
GIVE YOU A BRIEF INTRODUCTION OF
EACH SPEAKER BEFORE THEIR TALK.
YOU CAN FIND THEIR FULL BIOON
THE WEBSITE.
A KIND REMINDER TO ALL OF OUR
SPEAKERS.
PLEASE PACE YOURSELF TO ALLOW
FOR INTERPRETATION.
I WILL DO SO AS WELL.
AND TO OUR AUDIENCE, PLEASE FEEL
FREE TO PLACE QUESTIONS OR
COMMENTS IN THE CHAT FOR THE
SPEAKERS.
THEY WILL BE ADDRESSED AT THE
END OF THE SESSION.
WITH THAT, LET'S START WITH
DR. SUJATA BARDHAM.
PROGRAM DIRECTOR AT THE
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES BRANCH AT THE
NICHD.
DR. SUJATA BARDHAM OBTAINED HER
PH.D. IN BOSTON UNIVERSITY.
SHE JOINED NICHD IN 2013 AND HAS
SERVED AS THE COORDINATOR FOR DS
CONNECT.
ALSO A KEY MEMBER OF THE INCLUDE
PROJECT AND PASSIONATE ABOUT
ENGAGEMENT, OUTREACH AND
INCREASING DIVERSITY,
PARTICIPATION IN DOWN SYNDROME
COMMUNITY.
DR. SUJATA BARDHAM, PLEASE TAKE
THE STAGE.
>> SUJATA BARDHAM: THANK YOU FOR
THAT KIND INTRODUCTION.
NEXT SLIDE, PLEASE.
NEXT SLIDES.
SO, IN MY SHORT PRESENTATION
TODAY, I WILL PRESENT WHAT WE
HERE AT NIH AND INCLUDE HAVE
BEEN DOING TO INCREASE DIVERSITY
IN THE RESEARCH TEAMS.
YESTERDAY WE SAW THE DEMOGRAPHIC
OF PARTICIPANTS IN CLINICAL
RESEARCH.
TODAY, MY FOCUS IS ON RESEARCH.
THE GRAPH HERE ON THE LEFT SHOWS
THE NUMBER OF APPLICANTS, NOT
AWARDEES, WHO APPLIED FOR RO1 TO
NIH IN THE LAST 10 YEARS.
20,000 APPLICANTS
SELF-IDENTIFIED AS WHITE.
AND LET ME DRAW YOUR ATTENTION
TO THE LOWEST LINE ON THIS
GRAPH, THE PURPLE LINE.
THAT REPRESENTS APPLICANTS WHO
SELF-IDENTIFIED AS BLACK.
AND THE HISPANIC IS REPRESENTED
BY THE BLUE RIGHT ON TOP OF THE
PURPLE LINE.
SO WE HAVE A LOT OF CATCHING UP
TO DO.
THE GOOD NEWS, IF YOU LOOK AT
THE TWO GRAPHS ON THE RIGHT, WE
ARE ON THE RIGHT TRACK.
IN THE LAST 10 YEARS, ALTHOUGH
THE NUMBERS ARE LOW, WE HAVE
BEEN INCREASING THE NUMBER OF
RESEARCHERS WHO SELF-IDENTIFY AS
BLACK AND HISPANICS TO APPLY FOR
RESEARCH GRANTS TO THE NIH.
NEXT SLIDE, PLEASE.
SO WE ARE FOLLOWING THE
DIRECTIVE TO US TO INCREASE THE
NUMBER OF TRAINEES AND
INVESTIGATORS STUDYING DOWN
SYNDROME, INCLUDING RESEARCHERS
AND TRAINEES FROM
UNDERREPRESENTED BACKGROUNDS.
NEXT SLIDE, PLEASE.
THE SOON-TO-BE PUBLISHED INCLUDE
DOWN SYNDROME RESEARCH PLAN ALSO
CALLS OUT THIS KEY POINT OF
EXPANDING THE PIPELINE OF NEW
AND EARLY-STAGY INVESTIGATORS OF
ALL BACKGROUNDS.
WE ARE FORTUNATE THAT WITH THE
INCLUDE FUNDS WE HAVE BEEN
RECEIVING, WE HAVE SUPPORTED
ABOUT 30 TRAINEES IN THE LAST
FOUR YEARS, INCLUDING SEVERAL
NEW AND EARLY-STAGE
INVESTIGATORS.
WHAT I'M MOST EXCITED ABOUT IS
THAT WE ARE ABLE TO BRING IN NEW
INVESTIGATORS WHO ARE EXPERTS IN
OTHER TOPICS TO THE DOWN
SYNDROME RESEARCH COMMUNITY.
NEXT SLIDE, PLEASE.
INCLUDE ALSO LAUNCHED THE DATA
COORDINATING CENTER.
THAT HAS CREATED A CLOUD BASE
OPEN, DIGITAL AREA TO COLLECT,
INTEGRATE, HARMONIZE AND SHARE
DATA FROM VARIOUS STUDIES THAT
WE ARE FUNDING, FOCUSED ON DOWN
SYNDROME TO, MAXIMIZE AND
ACCELERATE DISCOVERIES.
ONE OF THE -- OF THE DATA
COORDINATING CENTER IS THE
ADMINISTRATIVE AND OUTREACH
CORE.
UNDER THE LEADERSHIP OF
DR. ESPINOZA WHO LEADS THIS
CORE, THE INCLUDE DCC ALSO
CONDUCTED LISTENING SESSIONS AND
SPOKE TO SEVERAL DOWN SYNDROME
ORGANIZATIONS.
OVER 36 COMMUNITY MEMBERS AND
CLINICAL PROFESSIONALS.
SO WHAT THEY LEARNED IS
SIMILAR -- NEXT SLIDE, PLEASE --
TO WHAT WE HEARD YESTERDAY FROM
OUR STAKEHOLDERS.
WE NEED TO INCREASE OUR
COMMUNICATION, EDGE AND LEVERAGE
PARTNERSHIPS.
WE ALSO HEARD FROM DR. ROSSER
ABOUT THE DIVERSITY IN THE DATA
THAT WE COLLECT.
AS PART OF INCLUDE, WE HAVE BEEN
SUPPORTING DEIA INITIATIVES
SINCE THIS PROGRAM STARTED.
I WAS FORT NOT CO-LEAD A
BREAKOUT SESSION BACK IN 2019
AND THE IRONY IS THAT WE WERE
PLANNING FOR A COHORT ALTHOUGH
WE WERE ALL IN-PERSON.
THIS WAS PRE-COVID.
THAT WORKING GROUP NOW HAS A
PAPER.
IT'S SOON-TO-BE PUBLISHED IN THE
INTERNATIONAL REVIEW OF RESEARCH
DEVELOPMENT OF DISABILITIES
ABOUT WHAT WE LEARNED ABOUT
PARTICIPANT ENGAGEMENT.
NEXT SLIDE, PLEASE.
EARLIER THIS YEAR, THE INCLUDE
DCC ALSO SPONSORED AND HOSTED
THE FIRST DATA SCIENCE FOR
DIVERSE COHORTS AND HAD MANY
TRAINEES, 11 FROM
UNDERREPRESENTED FOLKS WITH THE
FOCUS ON CAREER DEVELOPMENT AND
NETWORKING.
NEXT SLIDE, PLEASE.
THIS WORKSHOP AND THE LISTENING
SESSION THAT WE CONDUCTED HAVE
INFORMED OUR ACTIVITIES WHICH
HAVE BEEN SUPPORTED BY INCLUDE.
NEXT SLIDE, PLEASE.
AND REALLY QUICKLY, FUNDING
OPPORTUNITY ANNOUNCEMENTS THAT
WE HAVE BEEN PUBLISHING, THE NEW
INCLUDE OPPORTUNITIES ARE
ADHERING TO THE PRINCIPLES OF
NIH'S INTEREST IN ENCOURAGING
DIVERSE RECRUITMENT AS WELL AS
ALLOWING FOREIGN APPLICANTS AND
INCREASING THE DIVERSITY IN
INVESTIGATORS AND SUBJECTS.
THANK YOU FOR THAT REMINDER.
SO A FEW OF THE NOTICES AND
FUNDING OPPORTUNITY
ANNOUNCEMENTS THAT WE HAVE BEEN
ABLE TO PUBLISH IN THIS SPACE,
WE JUST HEARD FROM DR. TIN SEN,
OF THE IMPORTANCE OF TECHNOLOGY
AND HEALTH.
WE HAVE PUBLISHED THAT NOTICE
THIS PAST YEAR.
WE WANT TO BROADEN OUR FUNDING
TO DIFFERENT AREAS THAT
HISTORICALLY RECEIVED LOW LEVELS
OF SUPPORT FROM NIH.
THESE TWO R15 NOTICES SUPPORTS
PACK TEE DEVELOPMENT AND
INSTITUTIONAL RESEARCH,
INFRASTRUCTURE IN THESE AREAS.
IN ADDITION TO ENHANCING THE
COMPLETENESS OF INVESTIGATORS
AND THE RESEARCH CAPACITIES OF
INSTITUTIONS IN IDEA STATES PLUS
PUERTO RICO.
THE PROGRAM SERVES THE UNIQUE
POPULATION SUCH AS THE RULER AND
MEDICALLY UNDER-SERVED
COMMUNITIES.
I'M PROUD TO SAY THAT INCLUDE
HAS PUBLISHED AN R21 NOTICE ON
COMMUNITY-BASED PARTICIPATORY
RESEARCH INITIATIVE IN REDUCING
HEALTH DISPARITIES TO ADDRESS
DIVERSE PARTICIPATION IN
RESEARCH ON DOWN SYNDROME.
THIS NOTICE IS THE RESULT OF THE
2019 BREAKOUT SESSION FEEDBACK
THAT I MENTIONED EARLIER.
LASTLY, YOU WILL HEAR -- SORRY,
I FORGOT TO MENTION THAT WE ARE
ALSO FORTUNATE TO BE ABLE TO
FUND TWO RESEARCHERS WHO APPLIED
TO THE NIH CAUSE IN THE DEIA MAY
BE AND ADMINISTRATIVE SUPPLE
SUPPLEMENT.
AND IN OUR INSTITUTES AND
CENTERS, INCLUDING NIH, HAVE
JOINED THE SCIENCE EDUCATION
PARTNERSHIP AWARD.
SINCE WE BELIEVE THAT THE
PATHWAY TO INCREASED DIVERSE
INVESTIGATORS AND TRAINEES
STARTS IN OUR SCHOOLS FROM PRE-K
TO HIGH SCHOOL.
NEXT SLIDE, PLEASE.
LASTLY, THE MOST IMPORTANT,
OUTREACH IS A HUGE PART WHAT
HAVE WE DO.
WE HAD A PAUSE FOR COVID BUT WE
ARE BACK IN THE GAME.
OUR SMALL BUT FEISTY TEAM, WE
ARE BUSY ATTENDING EVENTS TO
CONNECT AND ENGAGE PARTICIPANTS
ALL OVER THE U.S. AND THE WORLD.
SO IF YOU HAVE ANY EVENT IN YOUR
COMMUNITY, PLEASE REACH OUT TO
US.
WE CAN SEND YOU MATERIALS IF YOU
CAN NOT ATTEND IN PERSON.
THANK YOU FOR YOUR ATTENTION.
>> THANK YOU.
PLEASE TAG THE INCLUDE PROJECT
WEBSITE FOR UP-TO-DATE
OPPORTUNITIES INCLUDING THE
INITIATIVE TO PROMOTE DIVERSITY.
LET'S WELCOME OUR NEXT SPEAKER,
DR. CHRISTY LEY.
THE SOCIAL SCIENCE ANALYST AT
THE NIH CHIEF OFFICER FOR
SCIENTIFIC WORKFORCE DIVERSITY
OFFICE, SO-CALLED COSWD WHERE
SHE MANAGES ON STRATEGIC
PLANNING, PROGRAM EVALUATION AND
EVIDENCE-BASED PROGRAM DESIGN.
SHE HOLDS A PH.D. AND MASTERS IN
SOCIOLOGY FROM HARVARD
UNIVERSITY AND CURRENT
PRIORITIES INCLUDE THE COSWD
STRATEGIC PLAN FOR FISCAL YEAR
2022-2026.
ORGANIZATIONAL DEVELOPMENT
TRAINING AND A LARGE-SCALE
RECRUITMENT INITIATIVE TO
ENHANCE DIVERSITY AND
PROGRAMMATIC IMPACT.
TOGETHER WITH OUR RANGE OF
PLANNING AND EVALUATION EFFORTS.
WELCOME DR. CHRISTY LEY.
>> CHRISTY LEY: THANK YOU.
REALLY APPRECIATE THE
INTRODUCTION AND GOOD AFTERNOON,
EVERYONE.
IT'S A REAL PLEASURE AND A
PRIVILEGE TO BE JOINING YOU
TODAY.
AND I WANT TO THANK THE
ORGANIZERS FOR THIS GENEROUS
INVITATION.
DOWN SYNDROME, AN AREA THAT
DEMANDS SUCH A DIVERSE
INTERDISCIPLINARY SCIENTIFIC
APPROACH IN ADDITION TO OTHER
FORMS OF DEMOGRAPHIC DIVERSITY
IN THE RESEARCHER AND CLINICAL
RESEARCH PARTICIPANT
POPULATIONS, WHICH THE VARIOUS
SESSIONS ACROSS THIS WORKSHOP
HAVE BEEN COVERING, REALLY
HIGHLIGHTS THE NEED FOR
ENHANCING DIVERSITY AMONG
RESEARCHERS IN A MEANINGFUL AND
SUN STAINABLE WAYS.
NEXT SLIDE, PLEASE.
SO TO HELP INFORM SOME OF THE
DOWN SYNDROME RESEARCH
COMMUNITIES TO ADDRESS
DIVERSITY, I PLAN TO ADDRESS
THREE MAIN QUESTIONS.
FIRST I WANT TO COVER DIVERSITY
IN THE SCIENTIFIC WORKFORCE
MATTERS.
AND SEVERAL OF THE PRESENTATIONS
HAVE FOCUSED ON THIS IN VARIOUS
WAYS SO I'M GOING TO SYNTHESIZE
AND PROVIDE JUST SOME ADDITIONAL
INSIGHTS THERE.
AND THEN CONNECT THAT WITH
SECOND, COSWD'S STRATEGIES FOR
ADDRESSING DEIMENTED A TO
PROVIDE YOU WITH A SENSE OF THE
SCOPE AND OVERARCHING APPROACHES
FOR TAKING AN EVIDENCE-BASED
APPROACH, WHICH HAS REALLY BEEN
CENTRAL TO US.
AND THEN FINALLY, I'LL DISCUSS
SOME OF THE SPECIFIC
OPPORTUNITIES FOR ENHANCING DEIA
IN THE SCIENTIFIC WORKFORCE,
CONNECTING THOSE TO SOME OF THE
AREAS THAT COSW DOES. FOCUSING
ON, PARTICULARLY BECAUSE THEY
ARE RIPE OPPORTUNITIES FOR
PARTNERSHIPS FOR A SMALL OFFICE
AND WE DO OUR WORK EFFECTIVELY
LIE BUILDING IMPORTANT
COLLABORATIONS.
NEXT SLIDE, PLEASE.
SO WHY IS DIVERSITY IN THE
SCIENTIFIC WORKFORCE MATTER?
SO WE CAN TACKLE LARGE, COMPLEX
PROBLEMS FROM A RANGE OF ANGLES.
NEXT SLIDE, PLEASE.
AND WE KNOW FROM THE RESEARCH ON
DIVERSITY THAT DIVERSITY IN
BIOMEDICAL RESEARCH, IN
PARTICULAR MATTERS, AS IT DOES
ACROSS MANY TEAM AND
ORGANIZATIONAL SETTINGS FOR
VARIOUS REASONS.
IMPROVES METHODICAL AND
ANALYTICAL APPROACHES THAT ARE
CENTRAL TO SCIENCE.
THEREBY INCREASING INNOVATION.
AND WILL IT INCREASES THE
QUALITY OF SCHOLARSHIP AS WELL
AS PROMOTING COLLABORATION
ACROSS TEAMS AND MEMBERS.
IT ALSO LEADS TO MORE EXPANSIVE
RESEARCH BY HAVING MORE
PERSPECTIVES AND OUTCOME
VARIATIONS WHEN LOOKING AT
DIVERSE POPULATIONS.
NEXT SLIDE, PLEASE.
SO, WE KNOW WE ARE ALL THE
DIVERSITY PLAYS THIS CRITICAL
ROLE FOR ACCOMPLISHING OUR
MISSION AT NIH AND IN THE
BROADER BIOMEDICAL COMMUNITY.
AND I WANTED TO HIGHLIGHT JUST
SOME OF THE ACTUAL MECHANISMS
BEHIND THAT.
WE HEAR ABOUT THE VALUE OF
DIVERSITY AND SOME OF THE
POSITIVE OUTCOMES BUT ONE OF THE
THINGS THAT OCCURS IS MANY
PEOPLE BELIEVE THAT
HETEROGENEOUS GROUPS HAVE
GREATER RETENTION.
THERE IS VARIOUS DIFFERENT
PERSPECTIVESES AND PEOPLE MAY
NOT AGREE.
AND IN FACT, THAT'S PARTLY TRUE
BUT THAT IS ACTUALLY WHAT CAN
HELP BUILD SOME OF THE DIVERSE
PERSPECTIVES, PARTICULARLY WHEN
THOSE GROUPS ARE WELL-DESIGNED
IN TERMS OF A FLATTER
ORGANIZATIONAL STRUCTURE.
THEN COMING TOGETHER AND THEY
TEND TO ENGAGE IN MORE
FACT-BASED DECISION-MAKING,
WHICH LEADS TO GREATER ACCURACY.
THEY PREPARE MORE AND ENGAGE IN
MORE PERSPECTIVE TAKING.
IN SOME WAYS ANTICIPATING THAT
OTHERS MAY NOT SHARE THEIR
VIEWS.
SO A POSITIVE EFFECT.
AND THEY ARE MORE DILIGENT WITH
INFORMATION.
SO IN OTHER WORDS, ANTICIPATING
THAT OTHERS MAY NOT AGREE WITH
YOU MAKES YOU, INDIVIDUALLY, AND
THE GROUP COLLECTIVELY, MORE
RIGOROUS, MORE RIGOROUSLY
DEVELOP YOUR THOUGHTS AND LEAD
TO MORE ACCURATE DECISIONS.
AND THE EXAMPLES HERE HAVE
REALLY OCCURRED ACROSS A RANGE
OF CONTEXT FROM MOCK JURY PANELS
TO EVEN BROADER CONTEXT SUCH AS
ECONOMIC MARKETS.
NEXT SLIDE, PLEASE.
BEYOND THOSE VARIOUS CONTEXT
MORE GENERALLY, WE THAN
DIVERSITY IMPROVES SCIENCE IN
PARTICULAR.
THIS RESEARCH SHOWN HERE
EXAMINED THE DEMOGRAPHIC
CHARACTERISTICS OF OVER 2.5
MILLION SCIENTIFIC PAPERS
WRITTEN BY U.S.-BASED AUTHORS
BETWEEN 1985 AND 2008.
AND THE FUNNY THING SHEAR THAT
GREATER ETHNIC HOM OVALLY IS
ASSOCIATED WITH PUBLICATION IN
LOWERING JOURNALS AND FEWER
CITATIONS, WHEREAS PAPERS WITH
AUTHORS FROM GREATER NUMBER OF
LOCATIONS, SO GREATER GEOGRAPHIC
DIVERSITY, AND LONGER REFERENCE
LIST.
SO GREATER INFORMATION
DIVERSITY, TEND TO GET PUBLISHED
IN HIGHER-IMPACT JOURNALS AND
RECEIVE MORE CITATIONS.
NEXT SLIDE, PLEASE.
>> SORRY TO INTERRUPT, DOCTOR.
PLEASE PACE DOWN A LITTLE BIT
FOR THE INTERPRETATION.
THANK YOU.
>> CHRISTY LEY: ABSOLUTELY.
THANK YOU.
AND SO DESPITE THESE ADVANTAGES
OF DIVERSITY, THEY REMAIN
VARIOUS BARRIERS AS THIS GROUP
IS WELL AWARE FOR HAVING UNDER
REPRESENTED GROUPS ACROSS THE
CAREER SPECTRUM.
WHILE UNDER REPRESENTED GROUPS
TEND TO MAKE GREATER
CONTRIBUTIONS TO SCIENTIFIC
INNOVATION OR CONTRIBUTE AT A
HIGHER RATE, RATHER THAN THE
MAJORITY, THEIR CONTRIBUTIONS
TEND TO BE UNDER VALUED AND ALSO
RESULT IN EARNING LESS
INFLUENTIALAL POSITIONS OVERALL,
WITHIN ACADEMIA AND RESEARCH AND
THAT CONTINUES ACROSS THE CAREER
TRAJECTORY.
NEXT SLIDE, PLEASE.
SO, IN SHORT, WE ARE NOT
UTILIZING OUR FULL TALENT POOL.
AND IN PARTICULAR, THIS HAS AN
EFFECT ON SCIENTIFIC ADVANCEMENT
AS SHOWN HERE, WHICH IS THE
GRAPH IS SHOWING THERE IS A
RELATIONSHIP BETWEEN INDIVIDUALS
IDENTITIES AND THEIR TOPIC
CHOICE.
AND DEFINING FROM THIS RESEARCH,
REALLY THERE WOULD BE GREATER
CONTRIBUTIONS TO VARIOUS AREAS
SUCH AS PUBLIC HEALTH AND
RESEARCH ON MINORITIES, IF UNDER
REPRESENTED GROUPS WERE BETTER
REPRESENTED IN SCIENCE.
NEXT SLIDE, PLEASE.
THIS SHOULD LOOK FAMILIAR.
ANOTHER EXTENSION OF SOME OF THE
WORK THAT DR. SUJATA BARDHAM HAD
SHOWN AT THE BEGINNING AND THIS
IS SHOWING THE RELATIONSHIP,
PERCENTAGE OF BY RACE AND
ETHNICITY OF RO1 EQUIVALENT
GRANTEES.
SO SHE HAD SHOWN THE APPLICANTS.
HERE THESE ARE THE GRANTEES IN
BLUE.
THE STEM DOCTORAL WORKFORCE IN
YELLOW AND THE U.S. POPULATION
IN GREEN.
AND HERE WE SEE A SOMEWHAT
DISPROPORTIONATELY HIGH NUMBER
OF WHITE AND ASIAN SCIENTISTS
RECEIVING RO1s RELATIVE TO THE
U.S. POPULATION WHILE THE
REVERSE IS TRUE FOR HISPANIC OR
LATINO AND BLACK OR
AFRICAN-AMERICAN SCIENTISTS.
NEXT SLIDE, PLEASE.
AND IF WE LOOK AT THE OVERALL
SCIENTIFIC WORKFORCE, THE
REPRESENTATION OF WOMEN AND
GROUPS UNREPRESENTED IN SCIENCE
DIMINISHES EVEN MORE AS WE GO
ACROSS THE CAREER TRAJECTORY
FROM INSTRUCTOR THROUGH
DEPARTMENT CHAIR ON THE RIGHT.
NEXT SLIDE.
SO, GIVEN THE VALUE OF DIVERSITY
AND ITS LACK OF BEING FULLY
REALIZED, I NOW WOULD LIKE TO
TURN TO, WHAT IS COSWD'S
STRATEGY FOR ADDRESSING
DIVERSITY?
NEXT SLIDE.
SO WE RECENTLY WENT THROUGH THE
PROCESS OF ISSUING OUR NEW
STRATEGIC PLAN IN SPRING OF THIS
YEAR, AND I'LL TOUCH ON THAT IN
A MINUTE.
SO CAPTURED IN THAT PROCESS AT
THE HIGHEST LEVEL IS OUR VISION,
WHICH IS TO ENABLE NIH AND
NIH-FUNDED INSTITUTIONS TO
BENEFIT FROM A FULL RANGE OF
TALENT, FOSTERING CREATIVITY AND
INNOVATION IN SCIENCE.
AND WE DO THAT BY FOCUSING ON
OUR MISSION WHICH IS TO BE THE
NIH THOUGHT LEADER IN THE
SCIENCE OF SCIENTIFIC WORKFORCE
DIVERSITY, USING EVIDENCE-BASED
APPROACHES TO CATALYZE CULTURES
OF INCLUSIVE EXCELLENCE.
NEXT SLIDE, PLEASE.
SO WE HAVE PURSUED THIS
VISION/MISSION AND THE GOALS
THAT I'LL DISCUSS IN A MINUTE
HERE, BY VERY RIGOROUS PROCESS.
ITSELF WAS REALLY EVIDENCE-BASED
TO DEVELOP THE PLANS THROUGH
SEEKING INPUT FROM INTERNAL AND
EXTERNAL STAKEHOLDERS, THROUGH A
VARIETY OF METHODOLOGIES,
INCLUDING GROUP DISCUSSIONS AND
INDIVIDUAL VIEWS, INCLUDING
THOSE WHO HAD A DIRECT DEIA
FOCUS AS WELL AS THOSE IN MORE
GENERAL LEADERSHIP ROLES TO
UNDERSTAND THE GAPS.
NEXT SLIDE, PLEASE.
AND THEN WE FOCUS ON THESE THREE
EVIDENCE-BASED GOALS TO PURSUE
OUR MISSION.
BUILDING THE EVIDENCE BY USING
EXISTING RESEARCH INSIGHTS AND
ALSO NIH AS A TEST BED FOR
INNOVATIVE SCIENTIFIC PROGRAMS
TO ENHANCE DEIA.
TWO, DISSEMINATING THE EVIDENCE
BY -- THROUGH WORK WITHIN THE
BIOMEDICAL SCIENTIFIC COMMUNITY
AT LARGE FROM TRAINEES TO
ESTABLISHED TENURED SCIENTISTS.
AND ACTING ON THE EVIDENCE BY
ADVANCING INTEGRATED
INSTITUTION-WIDE SYSTEMS TO
ADDRESS VARIOUS AREAS OF
DIVERSITY, INCLUDING ADDRESSING
BIAS, EQUITY, MENTORING AND
WORK-LIFE ISSUES.
AND ALSO OF THAT REQUIRES AN
UNDERSTANDING OF WHAT IS
EFFECTIVE AND UNDERSTANDING OF
HOW TO SCALE THAT UP.
SO WITH THAT IN MIND, I'D LIKE
TO NOW ON THE NEXT SLIDE MOVE TO
DISCUSSING THREE OF OUR
CROSS-CUTTING STRATEGIES FOR
PURSUING THOSE GOALS.
AND THEN I'LL FOCUS ON HOW WE
HAVE GONE ABOUT OPERATIONALIZING
THOSE.
SO, THREE CROSS-CUTTING
STRATEGIES.
COLLABORATION INTERNAL AND
EXTERNAL.
WE ARE A SMALL OFFICE AND AS I
MENTIONED EARLIER, WE DO OUR
WORK THROUGH EFFECTIVELY
COLLABORATING WITH OTHERS BOTH
INTERNAL AND EXTERNAL.
THE SECOND IS THROUGH
ACCOUNTABILITY WITH A FOCUS ON
COLLABORATING IN A WAY THAT
HELPS TO ESTABLISH PRACTICES AND
METRICS TO HELP SUPPORT LEADERS
IN CREATING AND MAINTAINING
THESE INCLUSIVE CULTURES.
AND FINALLY, AND MOST DIRECTLY
RELATING TO SUPPORTING
EVIDENCE-BASED EFFORT IS
EVALUATION WHEREBY WE ARE
FOCUSED ON CONDUCTING
ASSESSMENTS TOGETHER WITH
OTHERS, AND ADVISING ON PROGRAM
EFFECTIVENESS TO INFORM THE
STRATEGIES, PRACTICES AND
IMPROVEMENTS TO PROGRAMS.
NEXT SLIDE, PLEASE.
AND JUST BRIEFLY IN TERMS OF
SCOPE, WE ARE DOING THIS BOTH
INTERNALLY AT NIH, BOTH IN NIH'S
INTRAMURAL AND EXTRAMURAL
RESEARCH PROGRAMS, AS WELL AS IN
THE EXTERNAL BIOMEDICAL
COMMUNITY.
AND AS WELL AS ACROSS THE TALENT
LIFE CYCLE FROM RECRUITMENT
THROUGH RETENTION.
NEXT SLIDE, PLEASE.
SO I NOW WANTED TO SPEND A FEW
MINUTES FOCUSING ON THE AREAS TO
FURTHER ENHANCE DEIA BY FOCUSING
ON AREAS THAT WE HAVE PURSUED TO
HELP BUILD, DISSEMINATE AND ACT
ON THE EVIDENCE.
TO BUILD THE EVIDENCE, COSWD IS
COLLABORATING ACROSS NIH TO
PILOT PROGRAMS THAT ENCOURAGE
GREATER INCLUSION.
AS WE ARE A SMALL OFFICE, ONE
THING WE ARE DOING IS WORKING
WITH OUR DIVERSITY CATALYST WHO
ARE REPRESENTATIVES ACROSS NIH'S
ICs WHO ARE TESTING
THEMSELVES.
EVIDENCE-BASED APPROACHES WITHIN
THEIR ICs AND BRINGING THEM
TOGETHER FOR MEANINGFUL
DISCUSSIONS ON WHAT IS EFFECTIVE
AND WHERE THERE ARE
OPPORTUNITIES FOR SCALING THAT
UP.
ANOTHER EXAMPLE IS OUR RECENT
21ST CENTURY SCHOLARS PROGRAM
WHICH IS IN THE EXTRAMURAL
PROGRAM, THAT APPLIES A MODEL
THAT WE HAVE PURSUED IN THE
INTRAMURAL PROGRAM WITH OUR
DISTINGUISHED SCHOLARS PROGRAM
WHEREBY WE FOCUS ON USING
EVIDENCE THAT SHOWS THAT A
COVERT MODEL OF RECRUITMENT AS
WELL AS MENTORING CAN BE
EFFECTIVE TO ENHANCE DEIA.
I JUST CAME FROM DISCUSSING SOME
OF COSWD'S STRATEGIC PLANS
BEFORE THIS PRESENTATION BECAUSE
THE INAUGURAL CLASS IS
GRADUATING TODAY.
IT'S A VERY EXCITING TIME AND A
PROGRAM OUR OFFICE HAS GIVEN A
LOT OF ATTENTION TO OVER THE
COURSE OF THIS YEAR.
NEXT SLIDE, PLEASE.
TO DISSEMINATE THE EVIDENCE, WE
ARE REALLY FOCUSED ON SHARING
INSIGHTS ACROSS THE BIOMEDICAL
COMMUNITY THROUGH VARIOUS
COMMUNICATION CHANNELS.
AND ONE OF THE MOST PROMINENT
AREAS OR EFFORTS THAT WE HAVE
ENGAGED IN OVER THE PAST YEAR
HAS BEEN OUR SCIENTIFIC
WORKFORCE DIVERSITY SEMINAR
SERIES, WHICH BEGAN LAST
SEPTEMBER.
AND HERE WE HOST A RENOWNED
RESEARCHER ON THE LATEST
RESEARCH ON VARIOUS DEIA ISSUES.
SO I'D ENCOURAGE YOU TO LOOK AT
OUR WEBSITE AND TAKE A LOOK AT
OPPORTUNITIES FOR ATTENDING
THESE, WHICH ARE APPROXIMATELY
ON A QUARTERLY BASIS.
AND THEN WE ALSO ISSUE A
BIWEEKLY BLOG, QUARTERLY
NEWSLETTER AND PUBLISH VARIOUS
MANUSCRIPTS.
AGAIN, YOU CAN ACCESS THOSE OR
GET ON LISTSERVS THROUGH OUR
WEBSITE.
NEXT SLIDE, PLEASE.
AND FINALLY, TO ACT ON THE
EVIDENCE, WE ARE ADVANCING
SUCCESSFUL PROGRAMS THAT WE HAVE
EITHER IDENTIFIED IN THAT FIRST
PORTION OF BUILDING THE
EVIDENCE, BUT OF COURSE THESE
ARE CYCLICAL PROCESSES SO WE MAY
HAVE EVIDENCE ALREADY OF VARIOUS
ESTABLISHED PROGRAMS WE ARE NOW
MOVING FORWARD ON ACTING ON THE
EVIDENCE FOR.
AND SOME OF THESE THAT I'D LIKE
TO HIGHLIGHT ARE THE RESEARCH
PROTOCOL WHICH IS AN APPROACH
WHERE WE SYSTEMATICALLY IDENTIFY
DIVERSE CANDIDATES FOR
SCIENTIFIC POSITIONS.
AND WE HAVE HISTORICALLY DONE
THIS FOR MANY YEARS, OVER 5
YEARS.
AND THIS HAS HELPED BROADEN THE
DIVERSITY OF CANDIDATES
CONSIDERED FOR NIH POSITIONS.
BECAUSE WHY ARE A SMALL OFFICE,
WE CAN HANDLE A PARTICULAR
PORTION OF THOSE AT NIH.
WE HAD ONE UP TOW TWO ANALYSTS
WORKING ON THIS AT A TIME.
SO LAST YEAR, WE LAUNCHED A
SCALE UP INITIATIVE WHEREBY WE
TRAINED RECRUITMENT STRATEGISTS
ACROSS NIH ON THE PROTOCOL AND
THEY ARE NOW IMPLEMENTING THIS
TO HELP ENHANCE DIVERSITY AMONG
THEIR IC'S POSITIONS AND IN
FACT, OVER JUST THE PAST COUPLE
OF WEEKS, INCLUDING THIS WEEK,
WE ARE HOSTING OFFICE HOURS WITH
ALL THE RECRUITMENT STRATEGISTS
ACROSS NIH TO HELP ADDRESS
QUESTIONS, HEAR WHERE THEY ARE
HAVING CHALLENGES, WHERE THEY
ARE HAVING SUCCESSING TO SHARE
BEST PRACTICES AND SO IT'S BEEN
A VERY ROUTINE TIME TO FURTHER
MOVE THAT INITIATIVE FORWARD.
AND THEN A COUPLE OF THE OTHER
AREAS ARE, ONE THAT WAS
MENTIONED, WE ARE VERY EXCITED
TO HAVE THE DOWN SYNDROME
COMMUNITY INVOLVED WITH AND
INTERESTED IN, WHICH IS OUR DEIA
ADMINISTRATIVE SUPPLEMENT
FOCUSED ON SUCCESSFUL MENTORING
AND DEIA PRACTICES, AS WELL AS A
PRIZED COMPETITION THAT WOULD BE
RELEASING SOON THAT HAVE BEEN
RFI RECENTLY FOR
INSTITUTIONALIZED AND DEIA.
AGAIN, THESE PROVIDE EXAMPLES AT
DIFFERENT LEVELS WITHIN NIH AND
CAN BE EXPANDED OUT.
SOME AT THE INDIVIDUAL LEVEL AND
SOME AT THE INSTITUTIONAL LEVEL,
BUT THE COMMONALTY AMONG THEM IS
THAT THEY ARE REALLY
OPPORTUNITIES FOR ONES THAT CAN
BE APPLIED TO HELP FURTHER
SUPPORT DEIA WITHIN THE DOWN
SYNDROME RESEARCH COMMUNITY.
NEXT SLIDE, PLEASE.
AS TIME PERMITS, I WILL BE GLAD
TO ADDRESS QUESTIONS AT THE END
BUT I'D LIKE TO ENCOURAGE YOU TO
CONNECT WITH US.
WE HAVE SOCIAL MEDIA ACCOUNTS,
FOR ANY FURTHER UPDATES ON THE
VARIOUS PROGRAMS THAT I
MENTIONED.
AND THEN THE FINAL SLIDE.
THANK YOU VERY MUCH.
>> THANK YOU VERY MUCH FOR YOUR
VERY NICE OVERVIEW OF THE
PROGRAM.
PLEASE SAVE YOUR QUESTIONS AT
THE END OF THIS SESSION.
SO THE SECOND PART OF THIS
SESSION IS FOCUSED ON
NEUROSCIENCE WORKFORCE
DIVERSITY.
WE HAVE TWO SPEAKERS.
FIRST ONE IS DR. MICHELLE
JONES-LONDON SERVES AS CHIEF AT
THE OFFICE OF PROGRAMS TO
ENHANCE NEUROSCIENCE WORKFORCE
DIVERSITY AT THE NATIONAL
INSTITUTE OF NEUROLOGICAL
DISORDERS AND STROKE.
SHE IS ALSO THE CO-CHAIR FOR
BOTH THE NIH BLUEPRINT AND NIH
BRAIN INITIATIVE TRAINING
INCLUSION AND EQUITY EFFORTS.
DR. MICHELLE JONES-LONDON EARNED
HER PH.D. IN NEUROSCIENCE FROM
THE PENNSYLVANIA STATE
UNIVERSITY COLLEGE OF MEDICINE.
WELCOME DR. MICHELLE
JONES-LONDON.
>> MICHELLE JONES-LONDON: THANK
YOU AND THANK YOU TO MY
COLLEAGUE THAT JUST WENT BEFORE
ME.
A LOT OF THE THEMES YOU'LL HEAR
ARE VERY SIMILAR IN TERMS OF
POLICY AND PRACTICES.
MY GOAL FOR YOU TODAY IS TO GIVE
YOU SOME EXAMPLES OF PROGRAMS
THAT WE ARE UTILIZING IN THE
NEUROSCIENCE SPACE AND TO
HOPEFULLY GIVE YOU A SENSE OF
THINGS THAT CAN WORK.
AND SOME OF THE THEM ARE SUPPORT
IN TERMS OF FINANCIAL SUPPORT
BUT A LOT OF IT IS OTHER THINGS
AS WELL IN TERMS OF NETWORKING
AND A SENSE OF COMMUNITY.
SO NEXT SLIDE.
I AM THE CHIEF OF OPEN.
THAT'S THE ACRONYM WE USE FOR MY
OFFICE.
AND IT REALLY CONVEYS THE SENSE
THAT THE MISSION IS TO OPEN
ACCESS AND TO OPEN OPPORTUNITIES
TO INCREASE THE REPRESENTATION
OF ALL WHO ENGAGE IN RESEARCH.
AND FROM MY INSTITUTE
ESPECIALLY, NEUROSCIENCE
RESEARCH.
AND THE WAY WE THINK ABOUT THIS
AS A STRATEGY IS REALLY FIRST
IDENTIFYING DIVERSE STUDENTS,
GUESTING PEOPLE EARLY ON INTO
THE TRAINING PATHWAY TO REALLY
RECRUIT THEM AND PREPARE THEM
FOR THE NEXT STEPS.
TO REALLY THEN DEVELOP
MEANINGFUL MENTORSHIP AND
CONNECT THEM TO THE NETWORKS.
THIS OLD STEREOTYPE OF PEOPLE
DOING SCIENCE ALONE AT A BENCH
IN A BASEMENT, REALLY ISN'T
PRACTICAL.
PEOPLE HAVE TO BE ENGAGED AND
FEEL A PART OF PROFESSIONAL AND
SCIENTIFIC NETWORKS.
THE OTHER THINGS IS, ONCE WE
BUILD THESE PROGRAMS ARE PUT ON
THE STREETS, OUR VARIOUS
SOLICITATIONS.
WE REALLY WANT PEOPLE TO BE
SUCCESSFUL, SO WE PROVIDE
RESOURCES FOR HELPING THEM TO
COMPETE SUCCESSFULLY AND ALSO
ELIMINATING BARRIERS.
AND THEN FINALLY, LOOKING ALWAYS
IN TERMS OF ASSESSING AND
EVALUATING WHAT IS WORKING AND
WHAT IS NOT WORKING.
SO MONITORING THE INVESTMENT.
THAT'S OUR VALUES, OUR
COMMISSION OUR VISION.
NEXT SLIDE.
AS I SAID BEFORE, NOTHING IS IN
ISOLATION.
IT REALLY IS A SIGNIFICANCE
STEMMATIC APPROACH, OF THINKING
ABOUT EVERYTHING THAT WE DO AT A
COUPLE OF DIFFERENT LEVELS.
THERE IS THE INDIVIDUAL LEVEL,
THE INSTITUTIONAL LEVEL, AND
THEN THIS BROADER SCIENTIFIC
COMMUNITY VERY SIMILAR TO WHAT
YOU'RE DOING TODAY IN THE
CONVERSATIONS THAT YOU HAD THESE
PAST DAYS.
WE'RE ALWAYS BETTER TOGETHER.
SO THINKING THE BROADER
SCIENTIFIC COMMUNITY AS WELL AS
THE INSTITUTIONAL LEVEL AND
INDIVIDUAL LEVEL.
NEXT SLIDE.
SO, I'M GOING TO GIVE YOU JUST
AN OVERVIEW OF OUR EXAMPLES OF
SOME OF THE PROGRAMS THAT WE
SUPPORT.
YOU CAN USE THESE AS EXAMPLES TO
THINK ABOUT WHAT CAN BE DONE AT
YOUR OWN INSTITUTIONS AND
RESEARCH ENVIRONMENTS.
BUT MAYBE YOU PERHAPS ARE
SOMEONE WHO CAN ACTUALLY BENEFIT
FROM SOME OF THESE PROGRAMS OR
YOU HAVE AMEN TEE.
SO I'LL GO FAST BECAUSE OF TIME.
I'LL MAKE SURE THAT I DON'T TALK
FAST.
JUST KNOW THE LINK AT THE
BOTTOM, YOU CAN ALWAYS FIND OUT
MORE INFORMATION ABOUT ALL OF
THESE SPECIFIC PROGRAMS.
THIS SLIDE IS TO REALLY
HIGHLIGHT FOR YOU THAT AT NINDS,
WE HAVE PROGRAMS THAT GO ACROSS
THE ENTIRE SPAN OF CAREER
STAGES.
SO WE ARE TALKING ABOUT AT THE
HIGH SCHOOL LEVEL WHEN PEOPLE
ARE THINKING ABOUT GETTING IN OR
PUTTING THEIR TOE INTO A
RESEARCH EXPERIENCE, ALL THE WAY
TO NEW FACULTY.
AND THE WAY THAT WE DO THAT IS
ONCE AGAIN, THROUGH INDIVIDUAL
PROGRAMS OR FELLOWSHIPS THAT GO
TO A STUDENT OR RESEARCHER BUT
THEN ALSO INSTITUTIONAL PROGRAMS
LIKE OUR R25s, OR T32s.
THIS SLIDE ALSO SHOWS YOU THAT
WE HAVE A HEALTHY INVESTMENT IN
CLINICIAN SCIENTISTS SO THESE
CAN BE MDs OR M.D., PH.D.s
THAT TEND TO TAKE A MORE
PATIENT-FOCUSED RESEARCH LENSE.
BUT THEN ALSO IN PURPLE, WE HAVE
SEVERAL DIVERSITY COMPELLING
INTERESTS PROGRAMS WHERE OUR
GOAL HERE IS TO REALLY BRING
DIVERSE UNDERREPRESENTED GROUPS
INTO THE RESEARCH ENTERPRISE,
PROVIDE MENTORSHIP AND PROVIDE
CAREER DEVELOPMENT SUPPORT.
SO NEXT SLIDE.
I'LL GO INTO A FEW OF THE
PROGRAMS.
STARTING WITH ONE THAT I WILL
SAY USUALLY THEY SAY AT NIH,
ONCE YOU HAVE SEEN ONE NIH
PROGRAM, YOU HAVE SEEN ONE NIH
PROGRAM.
BUT THE DIVERSITY SUPPLEMENT
PROGRAM IS FORTUNATELY SOMETHING
THAT ALL 27 INSTITUTES AND
CENTERS AT NIH SUPPORT.
AND WHAT THIS IS, IS AN
ADMINISTRATIVE SUPPLEMENT TO
BRING SOMEONE INTO YOUR LAB, IF
YOU HAVE AN NIH RESEARCH GRANT,
TO BE AN R GRANTEE AND YOU CAN
THEN FUND THIS TRAINEE IN YOUR
LAB.
WHEN I SAY TRAINEE, IT REALLY
IS, YOU CAN BRING A HIGH SCHOOL
STUDENT, UNDERGRAD, GRAD,
POSTDOC, EVEN IN SOME CASES,
JUNIOR FACULTY.
THE PROGRAM PROVIDES SUPPORT FOR
THEIR SALARY, A LITTLE BIT OF
RESEARCH COSTS BUT REALLY IT IS
A WAY TO HELP AND SUPPORT AND
GET THAT TRAINEE THEIR PILOT
DATA TO THEN BRIDGE TO THEIR OWN
INDIVIDUAL SUPPORT.
AND SO, THE FLAVOR OF THIS IS WE
HAVE A GENERIC, WHAT WE WOULD
CALL A PARENT DIVERSITY
SUPPLEMENT PROGRAM, BUT SEVERAL
AREAS OF RESEARCH ALSO HAVE
THEIR DEDICATED DOLLARS TO
SUPPORT THESE DIVERSITY
SUPPLEMENTS.
AND THAT'S THE HEEL, THE BRAIN
INITIATIVE AND THEN ALSO SMALLER
BUSINESS, THE SBIRs AND
STTRs ALSO OFFER FUNDING FOR
DIVERSITY SUPPLEMENTS.
SO REALLY FANTASTIC PROGRAM THAT
CAN BE REALLY STRATEGICALLY USED
IF YOU'RE THINKING ABOUT
INCREASING WORKFORCE DIVERSITY
IN YOUR RESEARCH OR LAB
ENVIRONMENTS.
NEXT SLIDE.
WE HAVE TALKED ABOUT THIS A FEW
TIMES IN TERMS OF PATHWAY.
AND WHAT DOES IT TAKE TO REALLY
GROW DIVERSE SCIENTIFIC
WORKFORCE?
AND ONE OF THE THINGS THAT I
WOULD SAY THAT WE HAVE SEEN OVER
AND OVER AGAIN IS THAT WHEN IT
COMES TO TRANSITIONING ACROSS
CRITICAL CAREER POINTS, WE TEND
TO SEE WHAT WE USED TO SAY WOULD
BE A LEAK IN THE PATHWAY, OR
PEOPLE MAKING OTHER DECISIONS,
NOT REALLY STAYING AND
PROGRESSING ALONG THAT RESEARCH
PATH.
A FEW YEARS AGO, WHAT THE NIH
BLUEPRINT NOW THE BRAIN, WE
DECIDED TO CREATE A PROGRAM THAT
WOULD REALLY EMPOWER TRAINEES TO
SEE THEMSELVES AS FUTURE
ACADEMIC RESEARCHERS.
SO REALLY INCREASING THAT
SELF-EFFICACY BUT THEN PROVIDING
THE SUPPORT AND ALSO THE
RESEARCH DOLLARS FOR THEM TO
REALLY HAVE THIS GOLDEN TICKET
AS THEY WERE THINKING ABOUT
THEIR NEXT CAREER STAGE.
IN THIS CASE, THE POSTDOC.
SO THE S99K00 IS AN AWARD WHERE
SOMEONE WOULD APPLY IN THE LAST
TWO YEARS OF THEIR GRADUATE
PROGRAM AND THEN IF THEY
SUCCESSFULLY GET THE AWARD, THEY
INDIVIDUAL THIS K00 THAT THEY
CAN THEN GO OUT AND LOOK FOR
POSTDOCS.
AND HAVING THAT AWARD, WE'VE
HEARD FROM OUR TRAINEES, REALLY
CHANGES THINGS BECAUSE IT GIVES
THEM AN OWNERSHIP OF THEIR
SCIENTIFIC PROJECT FROM THE VERY
BEGINNING AS A POSTDOC.
AND THAT CAN BE A VERY POWERFUL
THING.
AS YOU CAN SEE AT THE BOTTOM OF
THE SLIDE, IT'S NOT JUST NINDS.
THE OTHER NEUROSCIENCE
INSTITUTES PARTICIPATE IN THIS
AS WELL.
NEXT SLIDE.
AS WE GO UP THE CAREER LADDER,
ANOTHER TRANSITIONAL AWARD, AND
THIS KNOW WAS STARTED BY NIGMS
AND NOW HAS SEVERAL OTHER ICs
THAT HAVE JOINED.
IT WAS THAT SAME THEME OF
EMPOWERING PEOPLE TO REALLY LOOK
AHEAD AND SEE THEIR CAREER PATH
BUT ALSO GIVE THEM THE FINANCIAL
SUPPORT TO DEVELOP TO THAT NEXT
STEP.
IT'S THE K99R00.
SO FOR THIS ONE, YOU WOULD BE A
POSTDOC IN YOUR ADVANCED CAREER
STAGES THAT WOULD APPLY.
YOU WOULD HAVE FUNDING TO
SUPPORT THE FINISHING UP OF YOUR
POSTDOC EXPERIENCE AND THEN HAVE
THIS R00 WHEN IT'S TIME FOR YOU
TO LOOK FOR YOUR FIRST TENURED
TRACK FACULTY POSITION.
AND AS YOU CAN IMAGINE, THIS
REALLY ONCE AGAIN, EMPOWERS
SOMEONE TO DO NEGOTIATION AND TO
REALLY DEVELOP THEIR SCIENTIFIC
PROGRAMS.
THE OTHER GREAT THING ABOUT THE
MOSAIC K99/R00 IS IT IS ALSO
LINKED TO A UE5.
AND THE UE5, THESE ARE PROGRAMS
AT DIFFERENT SCIENTIFIC
SOCIETIES, THAT ALSO CREATE THIS
COHORT OF MENTORING AND
PROFESSIONAL DEVELOPMENT FOR THE
MOSAIC SCHOLARS.
NEXT SLIDE.
AT NINDS, WE REALIZE EARLY ON
THAT WE WERE SEEING POSITIVE
TRENDS WHEN IT CAME TO SORT OF
GROWING THE PATHWAY, ESPECIALLY
OUR INVESTMENTS THAT WE HAD MADE
IN UNDERGRADUATE THROUGH OUR
ENDURE PROGRAM.
AND AS I MENTIONED, ALSO THE D
SPAN.
AND WE HAVE SEEN THIS SORT OF
LIKE GROWTH, RIGHT?
BUT THEN WHEN YOU LOOK AT THE
DATA AND I THINK YOU HAVE SEEN
IT FROM THE TWO PRESENTATIONS
BEFORE ME, WE START TO GET THIS
VERY TROUBLING DROP-OFF WHEN IT
COMES TO FACULTY, ESPECIALLY AS
PROFESSORS AND ALSO THE RO1.
SO WE THOUGHT LONG AND HARD
ABOUT THAT AND REALLY TRIED TO
STRATEGICALLY COME UP WITH
STRATEGIES TO ADDRESS THIS LATER
MESSAGE.
ONE OF THE STRATEGIES IS THE K01
FOR SOMEONE THAT IS IN LESS THAN
THEIR FIRST 3 YEARS OF THEIR
TENURED TRACK FACULTY POSITION.
AND WHAT IT DOES IS IT REALLY
PROVIDES THE SUPPORT FINANCIALLY
BUT ALSO THE SPONSORSHIP.
SO THIS IS A MENTORED AWARD BUT
NOT MENTORED IN TERMS OF HEAVY
OVERSIGHT.
THE SPONSORSHIP IN TERMS OF
HELPING THAT INDIVIDUAL REMOVE
THE OBSTACLES THROUGH THE
TENURED TRACK PROCESS.
SO -- THESE FUNDS REALLY ARE A
BRIDGE TO THAT FIRST RO1 FOR
THAT DIVERSE JUNIOR FACULTY.
NEXT SLIDE.
ANOTHER EFFORT ONCE AGAIN, YOU
SAW WE ARE, WHEN IT COMES TO NIH
AND RO1s FOR UNDER REPRESENTED
GROUPS, THERE HAS BEEN A LONG
DISPARITY AS HIGHLIGHTED BY THIS
PAPER, ESPECIALLY FOR
AFRICAN-AMERICANS.
AND RECENTLY, WE REALLY
STRATEGICALLY TRIED TO GO TO
THAT CAREER STAGE.
SO WHILE WE ARE WORKING ON
PROGRAMS TO GROW THE PATHWAY,
WHAT WE HAVE REALLY HEARD FROM
THE COMMUNITY IS THAT JUNIOR
FACULTY AND ALSO ESTABLISHED
FACULTY WHO ARE DIVERSE, REALLY
FELT LIKE THEY WERE BLEEDING OUT
OF THE NIH SYSTEM.
AND IN ORDER TO AMELIORATE THAT
AND TO HELP WITH THAT, WE
STRATEGICALLY CREATED A
DIVERSITY RO1.
NOW WE HAVE EVEN MORE INSTITUTES
WHO HAVE JOINED US SO WE ARE
REALLY THRILLED ABOUT THAT.
BUT THE GOAL HERE IS TO REALLY
ENCOURAGE A MORE DIVERSE POOL OF
PIs TO CONTRIBUTE TO
NEUROSCIENCE RESEARCH FOR OUR
INSTITUTE AND THESE OTHER
INSTITUTES THAT HAVE MISSIONS AS
WELL.
I THINK DR. LEY LAID OUT THAT
IT'S NOT JUST A PERSONAL BENEFIT
TO THESE INVESTIGATORS TO HAVE
THEIR DIVERSE PERSPECTIVES
INCLUDED, BUT IT REALLY IMPACTS
THE SCIENCE THAT WE DO.
AND THE QUALITY OF THE SCIENCE
THAT WE DO AT NIH.
SO IT'S NOT ONLY THE RIGHT THING
TO DO IN TERMS OF WE CAN DECIDE
INDIVIDUALLY AND MORALLY, BUT
SCIENTIFICALLY FOR THE
INVESTMENT.
IT'S A SMART THING TO DO.
AND SO THIS DIVERSITY RO1
TARGETS NEW INVESTIGATORS,
INCLUDING ESIs AND THEN ALSO
AT-RISK INVESTIGATORS.
SO IT COULD BE REALLY -- PEOPLE
CAN GET THAT FIRST RO1 BUT OFTEN
MAKES TROUBLE WITH STAYING IN
THE RESEARCH ENTERPRISE.
SO THE AT-RISK ALSO INCLUDES
THOSE INDIVIDUALS.
NEXT SLIDE.
I ALSO WANT TO HIGHLIGHT A
PROGRAM THAT IS FUNDED THROUGH
THE NIH COMMON FUND BUT ALSO IN
PARTNERSHIP WITH COSWD AND ALL
OF THE NIH INSTITUTES AND
CENTERS IS THE FIRST PROGRAM.
THIS IS REALLY THE -- DR. LEY
TALKED A LITTLE BIT ABOUT THE
DSB PROGRAM INTRAMURALLY.
THIS IS A VERSION OF THISSA
EXTRAMURALLY WITH -- WE ARE NOW
ON OUR SECOND AWARD -- ROUND OF
AWARDS WAS JUST ANNOUNCED.
THESE ARE PROGRAMS THAT REALLY
RECOGNIZE NOT JUST FOCUSING ON
FIXING BROKEN INDIVIDUALS WHEN
IT COMES TO INCREASING DIVERSITY
OF THE WORKFORCE, BUT REALLY
FIXING BROKEN SYSTEMS.
SO THESE U54s FROM AROUND THE
COUNTRY ARE DOING CLUSTER OR
COHORT HIRING.
IN ADDITION TO THAT, REALLY ARE
FOCUSED ON PROVIDING INCLUSIVE
EXCELLENT ENVIRONMENT IN TERMS
OF FACULTY DEVELOPMENT CORES,
MENTORSHIPS, RETENTION PLANS,
EVEN IN TERMS OF RECRUITMENT,
UNCONSCIOUS BIAS TRAINING AND
ALL THESE THINGS THAT WOULD
CONTRIBUTE TO NOT ONLY AN
ENVIRONMENT THAT HAS DIVERSITY
BY THE NUMBERS BUT REALLY
FOCUSES ON THE INCLUSION OF
THOSE ENVIRONMENTS AS WELL.
NEXT SLIDE.
AND SO I'LL GO REALLY QUICKLY.
I TALKED A LOT ABOUT THE MONEY
BUT A LOT OF THIS IS ALSO ABOUT
CREATING THAT SENSE OF
COMMUNITY, MAINTAINING THE
NETWORKS AND THEN PROVIDING THE
RESOURCES AND WE TALKED A LOT
ABOUT THIS MORNING.
ALSO ACTIVE OUTREACH.
NEXT SLIDE.
SO R25 INSTITUTIONAL PROGRAMS,
JUST REALLY WANT TO HIGHLIGHT
HERE ALL OF THESE PROGRAMS
REALLY FOCUS ON CREATING THAT
SENSE OF COMMUNITY, THAT SENSE
OF NETWORK.
HAVING PEOPLE REALLY IDENTIFY
WITHIN THEIR SCIENTIFIC
DISCIPLINE BUT ALSO PROVIDING
THIS PEER-TO-PEER SUPPORT.
NEXT SLIDE.
IN TERMS OF OUR MENTORING HUBS,
I WANT TO HIGHLIGHT SOME OF
THESE PROGRAMS THAT WE HAVE
SUPPORTED.
I THINK THAT WE WILL BE SHARING
THE SLIDES SO YOU'LL BE ABLE TO
SEE THESE BUT THESE ARE GREAT
PROGRAMS, ESPECIALLY IF YOU'RE
AT AN INSTITUTION WHERE OFTEN
PEOPLE FROM UNDERREPRESENTED
BACKGROUNDS CAN FEEL LIKE AN N
OF 1.
THESE ARE REALLY GREAT NATIONAL
MENTORING NETWORKS WHERE YOU CAN
FEEL A PART OF A VIOLENT AND A
SCIENTIFIC COMMUNITY.
NEXT SLIDE.
-- PART OF AN ENVIRONMENT AND
SCIENTIFIC COMMUNITY.
ALSO A BIG PART OF MY OFFICE IS
DOING EXTRAMURAL OUTREACH
BRINGING COMMUNITIES TOGETHER.
WE DON'T HAVE ALL OF THE ANSWERS
INSIDE OF NIH.
IT IS REALLY IMPORTANT THAT WE
TAKE ADVANTAGE OF THE WONDERFUL
PROGRAMS THAT COULD BE GOING ON
AT AN INSTITUTIONAL OR
DEPARTMENT LEVEL AND BECAUSE OF
THAT, WE BRING AND GATHER OUR
T32 AND R25 INSTITUTIONS EVERY
OTHER YEAR AND REALLY HAVE
CONVERSATIONS ABOUT SOME OF THE
PAIN POINTS OUT THERE IN
ACADEMIA.
OUR LAST ONE WAS ON MAINTAINING
A NEURAL NETWORK AND WE TALKED
ABOUT THE ISSUES INVOLVING
MENTORSHIP AND HOW WE CAN
TRANSFORM THAT AS A COMMUNITY.
WITH THE PARTNERSHIP.
NIH CAN'T DO THIS ALONE.
WE REALLY NEED INTENTIONAL
PARTNERSHIPS WITH OUR
INSTITUTIONS AND UNIVERSITIES.
AND OUR COMMUNITIES AND ADVOCACY
NETWORKS AS WELL.
NEXT SLIDE.
JUST A PLUG FOR OUR OPEN STAGE.
THIS IS WHERE WE TRY TO JUST
DEMYSTIFY A LOT OF OUR PROGRAMS.
ONCE AGAIN, I'LL SHARE THE
CONTACT BUT OUR NEXT ONE IS
GOING TO BE ON CLINICAL
RESEARCHERS AND HOW TO NAVIGATE
UNDERSTANDING NIH PROGRAMS,
ESPECIALLY AT NINDS.
NEXT SLIDE.
AND I'LL END WITH THIS WITH OUR
OPEN CONNECTIONS.
WE REALLY, AS I SAID, WANT TO BE
PARTNERS WITH YOU ALL.
WE HAVE SEVERAL SOCIAL WAYS THAT
YOU CAN CONNECT WITH US.
WE SEND OUT INFORMATION VIA OUR
LISTSERV AND ALSO HAVE A REALLY
INFORMATIVE PODCAST THAT IS
WORTH A LISTEN IN TERMS OF
DEMYSTIFYING HOW NINDS WORKS AND
HOW ACTIVE WE ARE IN TERMS OF
OUR TWITTER.
AND SO THE FINAL SLIDE I'LL END
WITH THAT.
WE REALLY DON'T SEE -- WE OFTEN
HEAR ABOUT DIVERSITY BEING A
PROBLEM BUT DIVERSITY REALLY IS
NOT A PROBLEM.
IT'S ACTUALLY THE SOLUTION.
SO LOOK FORWARD TO THE FUTURE
QUESTIONS.
THANK YOU.
>> THANK YOU VERY MUCH
DR. MICHELLE JONES-LONDON.
THANK YOU FOR SHARING WITH US
VERY RICH DEIA OPPORTUNITIES IN
THE NEUROSCIENCE WORKFORCE.
OUR LAST BUT NOT LEAST SPEAKER
OF THIS SESSION IS DR. JIANHUA
WU.
HE IS A PROFESSOR AT THE
DEPARTMENT OF KIN EASOLOGY AND
HEALTH AT GEORGIA STATE
UNIVERSITY.
DR. JIANHUA WU HAS BEEN
CONDUCTING BOTH BASIC AND
CLINICAL RESEARCH WITH CHILDREN
WITH AND WITHOUT DISABILITIES,
INCLUDING DOWN SYNDROME.
DR. JIANHUA WU IS ONE OF THE TWO
RECIPIENTS OF THE COSWD-DEIA
INITIATIVE FUNDED THROUGH THE
INCLUDE PROJECT HELPING TO
RECRUIT TWO DOCTORATE STUDENTS
AND UNDERGRADUATE STUDENTS FROM
THE UNDERREPRESENTED BACKGROUNDS
AND PROVIDE THEM WITH INTENSIVE
RESEARCH TRAINING.
WELCOME DR. JIANHUA WU.
>> JIANHUA WU: THANK YOU FOR
THAT INTRODUCTION.
SO, MY TALK WILL BE DIFFERENT
FROM THE PREVIOUS TWO TALKS.
I AM GOING TO FOCUS ON MENTORING
STUDENTS, PARTICULARLY THOSE
FROM UNDERREPRESENTED
BACKGROUNDS.
NEXT SLIDE, PLEASE.
SO, IN SUMMER OF 2021, ONE DAY I
RECEIVED AN E-MAIL FROM SOMEONE
WHO I DO NOT KNOW.
AND THE E-MAIL SAID THAT I WAS
THE RECIPIENT OF THE JEAN LANDA
PATEL AWARD.
I THOUGHT THIS IS NOT TRUE
BECAUSE THE AMERICAN SOCIETY OF
BIOMECHANICS ESTABLISHED THIS
AWARD JUST PREVIOUSLY.
SO THEY ARE GOING TO GIVE AWARD
AND I FEEL LIKE I AM NOT GOOD
ENOUGH TO RECEIVE THIS
PRESTIGIOUS AWARD.
SO THIS AWARD IS ABOUT
MENTORING, DIVERSE MENTORING.
IT RECOGNIZED THE LONG-TERM
IMPACT OF MENTORING ON CAREERS
OF INDIVIDUAL SCIENTISTS AND THE
ULTIMATE BETTERMENT OF OUR
SOCIETY.
SO I FEEL LIKE I HAVE DONE
SOMETHING BUT I WAS SURPRISED TO
KNOW THAT I AM THE RECIPIENT OF
THIS AWARD.
AND NEXT DAY IT WAS CONFIRMED
AND THEN MY STUDENTS TOLD ME,
GREAT.
YOU RECEIVED THIS AWARD BECAUSE
WE NOMINATED YOU.
SO I FEEL LIKE IT WAS SURREAL TO
RECEIVE THIS AWARD AND RECOGNIZE
THAT I HAVE DONE SOMETHING WHICH
IS WORKING TO THE BIOMECHANICS
TO THE WHOLE SOCIETY.
SO I LOOKED AT THE CRITERIA FOR
THIS AWARD.
IT HAS THREE ASSETS.
THE FIRST IS ENCOURAGE WOMEN IN
SCIENCE AND ENGINEERING.
THE SECOND ONE IS TO PROVIDE
UNDERGRADUATE STUDENTS WITH
EXPERIENCE AND ESPECIALLY IN
RESEARCH AND OUTREACH.
THE LAST ONE IS ENGINEERING
EDUCATION AND INTERNATIONAL
OUTREACH.
TODAY I'M GOING TO SHARE WITH
YOU MY WORK IN THESE 3 AREAS AND
HOPEFULLY THAT WILL STIMULATE
DISCUSSION ABOUT HOW TO MENTOR
STUDENTS WHO ARE FROM
UNDERREPRESENTED BACKGROUNDS.
NEXT SLIDE, PLEASE.
SO I WANT TO GIVE INFORMATION
ABOUT MY BACKGROUND.
I WAS BORN AND RAISED IN CHINA.
SO I WENT TO COLLEGE AND
GRADUATE SCHOOL IN CHINA.
MY PARENTS HAD BEEN VERY
SUPPORTIVE ABOUT MY EDUCATION.
AND WHEN I TOLD THEM THAT I WANT
TO GO TO UNITED STATES TO
FURTHER MY STUDIES, THEY FULLY
SUPPORTED ME.
AND THAT TOTALLY CHANGED MY
CAREER, MYECTION AND HOW I SEE
THE DIVERSITY -- EDUCATION -- IN
THE RESEARCH IN SOCIETY.
SO I WENT TO UC DAVIS FOR MY
PH.D. AND UNIVERSITY IN MICHIGAN
FOR MY POSTDOCTORAL.
SO I GOT TRAINED BY SO MANY
PEOPLE AND CERTAINLY A LOT OF
GOOD AFFLUENT MENTORS THAT ALSO
CAME FROM DIFFERENT BACKGROUNDS.
NEXT SLIDE, PLEASE.
WHEN I STARTED IN MY ESTABLISHED
POSITION AT GEORGIA STATE
UNIVERSITY IN 2007, I HAD
FULFILL MY DREAM ABOUT TRAINING
STUDENTS WHO COME FROM
UNDERREPRESENTED BACKGROUNDS.
SO GEORGIA STATE IS ONE OF THE
MOST DIVERSE UNIVERSITIES IN THE
UNITED STATES.
WE HAVE MORE THAN 54,000
STUDENTS FROM MORE THAN 167
NATIONS AND TERRITORIES.
AND RANKED NUMBER 1 UNIVERSITY
FOR ANNUAL GRADUATE
AFRICAN-AMERICAN STUDENTS IN THE
UNITED STATES.
AND ALSO WE ARE R1 URBAN
RESEARCH UNIVERSITY.
WE DO BOTH RESEARCH AND
TEACHING.
WE INCORPORATE RESEARCH INTO
TEACHING AND TRY TO STIMULATE
INTEREST FROM STUDENTS WHO COME
FROM THE UNDERREPRESENTED
BACKGROUNDS.
AND HELP THEM TO DEVELOP
RESEARCH SKILLS AND MOVE ON TO
THE NEXT STAGE OF THEIR CAREER.
NEXT SLIDE.
SO, MYSELF, MY UNDERGRADUATE IN
TRAINING WAS IN ENGINEERING.
BUT MY DOCTORAL STUDY WAS ABOUT
HUMAN CONTROL AND THEN I SPENT
PEDIATRIC REHABILITATION WHEN I
WAS A POSTDOC.
SO I GOT TRAINING TO COMBINE
THOSE IN PEDIATRIC
REHABILITATION SKILLS FOR MY
RESEARCH.
SO I'M FOCUSED ON UNDERSTANDING
HOW THE EVENTS CHILDREN WITH
DISABILITIES MOVE AROUND,
DEVELOP THEIR MOTOR SKILLS AND
ALSO I WANT TO DESIGN INNOVATIVE
PROTOCOLS TO HELP THOSE KIDS WHO
HAVE DEVELOPMENTAL DELAY TO
ADVANCE THEIR DEVELOPMENT AND
ALSO HAVE USED THAT TO PROMOTE
DIFFERENT IN MULTIPLE DOMAINS,
INCLUDING MOTOR AND ALSO
LANGUAGE, COGNITION AND SOCIAL
SKILLS.
SO THAT HAS BEEN MY FOCUS FOR
ALMOST THE LAST 20 YEARS.
NEXT SLIDE, PLEASE.
SO I HAVE CLINICAL PERSPECTIVE
AND EXPERIENCE WHEN I CONDUCT
TRAINING WITH INFANTS WITH DOWN
SYNDROME.
I WAS LUCKY ENOUGH TO HAVE THE
GRANT FROM NIH TO SUPPORT THIS
RESEARCH.
RIGHT NOW WE ARE DOING ANOTHER
STUDY WITH THIS POPULATION IN
TRYING TO UNDERSTAND THE
COMBINATION OF TREADMILL
TRAINING AND FINE MOTOR
TRAINING, HOW DOES THAT HELP
CHILDREN WITH DOWN SYNDROME TO
INCLUDE THEIR DOMAINS.
ANOTHER CLINICAL INTEREST IS THE
BONE GROWTH AND THE PHYSICAL
ACTIVITY OF CHILDREN WITH DOWN
SYNDROME.
I WANT TO UNDERSTAND HOW THE
BONE GROWTH AND DEVELOPMENT WILL
SHAPE THEIR PHYSICAL ACTIVITY
AND BENEFIT THEIR PHYSICAL
ACTIVITY.
I AM INTERESTED IN LOCOMOTOR
DEVELOPMENT AND WALKING,
RUNNING, JUMPING, STANDING, HOW
THOSE INFANTS AND CHILDREN
DEVELOP THOSE SKILLS AND HOW WE
CAN USE INTERVENTION PROTOCOL TO
IMPROVE THOSE ACTIVITIES AND
THOSE ABILITIES IN THOSE
CHILDREN.
SO, WE DEAL WITH DIVERSITY,
EQUITY, INCLUSION AND
ACCESSIBILITY IN RESEARCH AND
MENTORING.
WHEN WE TALK ABOUT RECRUITING
PARTICIPANTS, WHEN TALKING ABOUT
RECRUITING GRADUATE STUDENTS OR
FOR RESEARCH AND FOR TRAINING.
SO I CONSTANTLY THINK THIS IS
NOT AN ISSUE.
THIS IS SOMETHING WE NEED TO DO
TO MAKE OUR RESEARCH MORE
APPLICABLE TO THE SOCIETY, TO
MAKE SURE WE HAVE THE NEXT
GENERATION OF RESEARCHERS WHO
HAS GOOD UNDERSTANDING ABOUT
DIVERSITY AND HAVE A GOOD
TRAINING ON THAT.
NEXT SLIDE.
I WAS FORTUNATE TO HAVE VERY
DIVERSE AND DOCTORAL STUDENTS
AND ALSO EVEN UNDERGRADUATE
STUDENTS THAT CAME FROM A
VARIETY OF RACES AND
BACKGROUNDS, AFRICAN-AMERICAN,
ASIAN, HISPANIC BACKGROUND,
ET CETERA.
AND ALSO THEY CAME FROM
DIFFERENT EDUCATIONAL
BACKGROUNDS.
FOR EXAMPLE, SOME CAME FROM
BIOLOGY, PHYSICAL EDUCATION,
PHYSICAL THERAPY, MEDICINE,
BIOMEDICAL ENGINEERING.
SO WE HAVE SO MANY PEOPLE
INTERESTED IN OUR FIELD.
THAT'S GREAT.
AND ALSO I AM VERY PROUD THAT
HALF OF THEM ARE WOMEN
SCIENTISTS AND CLINICIANS.
SO WE BASICALLY TRAIN AND
PREPARE THE NEXT GENERATION OF
RESEARCHERS FOR OUR FIELD.
NEXT SLIDE, PLEASE.
SO, HERE IS MY MENTORING
PHILOSOPHY.
WHEN I MENTOR MY STUDENTS, I
WANT TO LET THEM KNOW THAT I
WANT TO PROMOTE THEIR RESEARCH
INDEPENDENCE AND ALSO WANT THEM
TO KNOW RESEARCH IS ABOUT
COLLABORATION.
YOU WANT TO BE PART OF THE TEAM
BUT ALSO YOU WILL BE INDEPENDENT
TO LEAD CERTAIN PROJECTS.
AND ALSO I WANT TO PROVIDE THEM
WITH EXPERIENCE WITH THE
CLINICAL POPULATION, WHETHER
DOWN SYNDROME OR THE CEREBRAL
PALSY.
AND I WANT TO UNDERSTAND THE
NEEDS OF THESE COMBINATIONS AND
WHY WE DO RESEARCH?
WE TRY TO GAIN KNOWLEDGE AND USE
THE KNOWLEDGE TO HELP THOSE
CLINICAL POPULATIONS, HELP THEM
TO IMPROVE THEIR QUALITY OF
LIFE.
AND CERTAINLY I ALSO WANT THE
STUDENTS TO HAVE EXPERIENCE
TRAINING OR SUPERVISING
UNDERGRADUATE STUDENTS.
SO WE BASICALLY HAVE A NICE
COMBINATION OF DIFFERENT LEVELS
OF TRAININGS AND I THINK THAT
FORMS A VERY ACTIVE TEAM AND TO
PROVIDE EXCELLENT TRAINING AND
EXPERIENCE.
NEXT SLIDE, PLEASE.
I ALWAYS DO WEEKLY GROUP
MEETINGS.
DOESN'T MATTER HOW BUSY I AM.
I THINK THIS CREATES A VERY FAIR
AND RESPECTFUL MEETING
ENVIRONMENT.
SO WE -- I CONSIDER OUR STUDENTS
WITH STRENGTH AND TO LEAD
DISCUSSIONS OR PROJECTS BECAUSE
THINKING ABOUT SOMEONE COMING
FROM ENGINEERING BACKGROUND,
COMPARED TO SOMEONE COMING FROM
EDUCATION, THEY HAVE DIFFERENT
EDUCATIONAL BACKGROUNDS BUT THEY
HAVE SAME INTEREST.
SO I WANT THEM TO LEAD THE
PROJECT WHICH FITS THEIR ABILITY
BUT AT THE SAME TIME GIVE THEM
ROOM TO IMPROVE AND THEIR
RESEARCH HORIZON.
AND I WANT ALSO TO USE
INDIVIDUAL MEETING TO TRULY
BUILD A STRONG RELATIONSHIP
BETWEEN ME AND THE STUDENT.
AND SO DURING THOSE MEETINGS, WE
CAN TALK ABOUT ANYTHING, NOT
JUST RESEARCH.
BECAUSE THE STUDENTS THEY ARE
LIVING THEIR LIVES.
THEY MAY HAVE FINANCIAL
CONSTRAINTS AND SO THAT IS KIND
OF, DURING THE MEETING, WE CAN
DISCUSS THIS AND WE CAN TALK
ABOUT SOLUTIONS.
I TRY REALLY HARD TO PROVIDE
FINANCIAL SUPPORT BUT THERE ARE
OTHER THINGS AND OTHER FINANCIAL
SUPPORTS.
AND I THINK AS A MENTOR, IT'S MY
JOB TO PROVIDE STRONG SUPPORT TO
MY STUDENTS.
SO PREPARE MY STUDENTS FOR THE
DREAM CAREER AND ALSO ENCOURAGE
THEM TO THINK BIG AND NOT JUST
DURING 4 OR 5 YEARS OF DOCTORAL
TRAINING OR STUDY, BUT THINK BIG
THE THINGS YOU WANT TO ACHIEVE.
THEY ALWAYS HAVE THE DREAM IN
THEIR CAREER.
THEY WANT TO ACCOMPLISH AND IT
STARTS FROM THE TRAINING IN MY
LAB.
NEXT SLIDE, PLEASE.
AS I SAID, A MENTOR MENTEE
RELATIONSHIP IS VERY IMPORTANT
TO BUILD.
IT TAKES TIME.
AND SO YOU HAVE TO SHOW RESPECT
ALL THE TIME.
YOU HAVE TO TREAT YOUR STUDENTS.
FOR ME JUST LIKE MY CHILD.
BECAUSE I PUT PERSONAL
PERSPECTIVE AND I WANT TO HAVE A
PERSONAL CONNECTION WITH MY
STUDENTS.
AND SO, THEY WILL BE GONE AFTER
THEY GRADUATE FROM MY SCHOOL,
BUT I WILL KEEP THAT
RELATIONSHIP ONGOING AND I WANT
TO SEE HOW THEY GROW AFTER THEY
GRADUATE FROM THE SCHOOL.
AND THEY GO ON TO THEIR OWN
CAREER.
AND ALSO BE REALLY PATIENT AND
BE CAREFUL.
AND SO THAT IS THE THING I
LEARNED THROUGH THE YEARS AND
HOW TO CHOOSE THE RIGHT WORK TO
ADDRESS YOUR CONCERNS,
SUGGESTIONS AND AT THE SAME
TIME, PROTECT YOUR STUDENTS TO
PROVIDE THAT KIND OF RESPECTFUL
ENVIRONMENT.
AND I LEARNED A LOT.
I KNOW MEMBERSHIP IS NOT ONE WAY
TRAFFIC.
IT'S TWO WAY.
STUDENTS LEARN A LOT OF THINGS
FROM ME AND ALSO I LEARN A LOT
OF THINGS FROM STUDENTS AND I'M
PROUD THAT ALL MY FORMER
DOCTORAL STUDENTS LEARNED IT
UPON GRADUATION.
THAT'S NOT EASY IN THE JOB
MARKET BUT THEY ARE ALL VERY
SUCCESSFUL.
SO I AM VERY PROUD OF THAT.
NEXT SLIDE, PLEASE.
SO, I AM PROFESSOR IN A COLLEGE
SO TEACHING IS PART OF MY DUTY.
AND I ENJOY TEACHING.
THE REASON I ENJOY TEACHING IS I
CAN SHARE MY KNOWLEDGE WITH THE
STUDENTS AND ALSO I CAN KIND OF
GIVE THEM THE PERSPECTIVE ABOUT
RESEARCH AND INTEGRATE RESEARCH
INTO MY TEACHING.
AND ESPECIALLY THINKING ABOUT
OUR UNDERGRADUATES.
MORE THAN HALF OF THE STUDENTS
ARE AFRICAN-AMERICAN OR
HISPANIC.
SO I TRY TO CLUE THEM INTO THE
RESEARCH AND SAY HERE IS THE
PROBLEM.
NOW THIS IS KNOWLEDGE WE HAVE
ALREADY.
WHAT ARE SOLUTIONS IN WHAT CAN
WE DO TO ADVANCE THE FIELD?
TRY TO ENCOURAGE UNDERGRADUATES
TO THINK ABOUT RESEARCH.
AND WE HAVE UNDERGRATIN TERNSHIP
FOR THOSE STUDENTS.
SO I -- UNDERGRADUATE
INTERNSHIPS.
SO I'M LUCKY TO HAVE THEM
WORKING IN MY LAB FOR THAT.
NEXT SLIDE, PLEASE.
THE OTHER THING I DID, THIS IS
NOW TRULY RELEVANT TO RESEARCH.
I DEVELOP INTERNATIONAL OUTREACH
PROGRAM.
THIS IS A PROGRAM IN CHINA.
SO WE HAVE A PARTNERSHIP WITH
BEIJING UNIVERSITY.
EACH YEAR IN MAY, I BRING ABOUT
50 STUDENTS FROM OUR
UNDERGRADUATE PROGRAM TO CHINA
AND SO WE WILL HAVE THE LOCAL
PROFESSORS TEACH CHINESE
MEDICINE, CHINESE PRESENTATIONS,
ET CETERA.
SO THOSE ARE THE NEW
PERSPECTIVES FOR OUR STUDENTS.
AND SO, PROVIDE STUDENTS WITH
DIFFERENT OPPORTUNITIES TO
INTERACT WITH DIFFERENT PEOPLE
IN DIFFERENT COUNTRIES.
EVEN THOUGH THIS IS A TWO-WEEK
PROGRAM, BUT STUDENTS REALLY,
REALLY THINK THIS IS A WONDERFUL
PROGRAM TO LEARN SO MANY
DIFFERENT THINGS.
THAT TRIGGERS THEIR INTEREST IN
FURTHER RESEARCH.
NEXT SLIDE, PLEASE.
I AM LUCKY ENOUGH BEING
RECIPIENT FOR THIS NIH
INITIATIVE.
AND I'M GOING TO RECRUIT TWO
DOCTORAL STUDENTS, UNDERGRADUATE
STUDENTS TO PROVIDE US WITH
INTENSIVE TRAINING.
NEXT SLIDE, PLEASE.
SO THIS IS OUTLINE MY TRAINING
PLAN.
I HAVE TRAINING PLAN BUT I DON'T
THINK I HAVE TIME TO GO OVER
THOSE.
BUT BASICALLY I'M TRAINING THEM
WITH ALL DIFFERENT PERSPECTIVES.
FOR EXAMPLE, I WANT THEM TO GAIN
RESEARCH PERSPECTIVE, INTEREST
OF HUMAN FACTOR RECRUITMENT.
I WANT THEM TO IMMERSE
THEMSELVES INTO THE LOCAL
COMMUNITY.
TRY TO SPREAD OUT AND MAKE
CONNECTION WITH LOCAL COMMUNITY
AND TRY TO HELP US TO REACH
THOSE OTHER REPRESENTATIVES AND
PARTICIPANTS FOR OUR RESEARCH
STUDY.
AND ALSO I WANT THEM TO HAVE
EXPERIENCE LOOKING AT RESEARCH,
CLINICAL RESEARCH AT DIFFERENT
INSTITUTIONS, AND JUST BY
OBSERVATION THOSE STUDENTS CAN
GAIN A LOT MORE EXPERIENCE AND
EXPAND THEIR RESEARCH HORIZON.
AND AT GEORGIA STATE WE HAVE
LOTS OF RESEARCH SEMINARS AND
ALSO DEIA INITIATIVES.
AND SO THOSE STUDENTS WILL BE
IMMERSED IN THIS ACTIVITIES AND
ATTEND THE SEMINARS ACTIVITIES
AND GAIN THE KNOWLEDGE AND BRING
THE KNOWLEDGE BACK TO MY GROUP.
AND SHARE THE KNOWLEDGE WITH US.
AND TO HAVE -- IN MY GROUP KNOW
WHAT IS GOING ON IN OUR
INSTITUTIONS AND SO ON.
NEXT SLIDE, PLEASE.
SO, BECAUSE I HAVE LIMITED TIME,
I WANT TO SUMMARIZE WHAT I DID
OVER THE PAST 15 YEARS.
AND MY EXPERIENCE TEACH ME TO BE
PATIENT, BE GRATEFUL AND BE OF
GOOD MIND TO ESPECIALLY THOSE
WHO CAME FROM UNDERREPRESENTED
MINORITY BACKGROUNDS.
BECAUSE A LOT OF THEM ARE REALLY
SHY.
THEY DON'T KNOW HOW TO KIND OF
COMMUNICATE OR SURE THAT THEY
ARE WITH YOU.
SO YOU NEED TO TAKE TIME.
YOU NEED TO NURTURE THE
STUDENTS.
WHEN THEY HAVE CONCERNS AND
QUESTIONS, ALSO ASK THEM TO
ENCOURAGE THEM TO TALK TO THEIR
FELLOW STUDENTS IN THE LAB
BECAUSE THEY WILL GET THE
SUGGESTIONS FROM THEIR STUDENT
PERSPECTIVE AND AGAIN, I THINK
THIS IS SOMETHING I REALLY ENJOY
TO DO AND I'M GOING TO CONTINUE
TO DO THIS AND FOLLOW THE DEIA
INITIATIVE IN MY CAREER.
THANK YOU.
>> THANK YOU VERY MUCH, DOCTOR
FOR YOUR GREAT EFFORT, TRAINING
AND MENTORING, ESPECIALLY FOR
THOSE UNDERREPRESENTED TRAINEES.
WE ARE OPEN FOR QUESTIONS NOW.
LET'S GO BACK TO THE ROOM.
I NOTICED THE CHAT IS VERY
ACTIVE AND THING SUJATA BARDHAM
ADDRESSED ALL THE QUESTIONS.
IF YOU HAVE ADDITIONAL
QUESTIONS, PLEASE SPEAK UP.
THANK YOU FOR THE PANELISTS TO
TURN ON YOUR VIDEO.
WHILE WE ARE WAITING FOR OTHERS,
I HAVE ONE QUESTION FOR
DR. JIANHUA WU.
I BELIEVE ONE OF THE BENEFITS TO
INCREASE THE DIVERSITY AMONG
TRAINEES COULD HELP INCREASE THE
ENGAGEMENT OF OUR
UNDERREPRESENTED GROUP IN THE
RESEARCH.
DO YOU AGREE?
DO YOU HAVE ANY EXAMPLES?
WHAT KIND OF STRATEGIES DO YOU
USE FOR THAT?
>> JIANHUA WU: I AGREE.
WE ACTUALLY BENEFITED FROM
HAVING STUDENTS FROM
UNDERREPRESENTED BACKGROUNDS.
FOR EXAMPLE, WE HAVE A LARGE
HISPANIC COMMUNITY IN ATLANTA
AREA.
BUT WE TYPICALLY DO NOT HAVE
ANYBODY IN MY LAB WHO CAN SPEAK
SPANISH.
SO WE -- I HAD ONE GRADUATE
STUDENT HISPANIC GRADUATE
STUDENT WHO JUST GRADUATED AND
HE HELPED US TO REACH OUT TO
LOCAL COMMUNITIES AND RECRUIT
SOME SUBJECTS, PARTICIPANTS FOR
OUR STUDY.
AND THE PARENTS DO NOT SPEAK
ENGLISH BUT THEY CAN SPEAK
SPANISH.
SO MY STUDENT REACHED TO THEM
AND PROVIDED INTERPRETATION TO
BRING THE PARTICIPANTS INTO OUR
LAB AND SENT BACK HOME.
SO THAT KIND OF CREATES THE KIND
OF ENVIRONMENT.
SO WE ARE WELCOMING THOSE
UNDERREPRESENTED COMMUNITY TO
COME TO OUR LAB TO PARTICIPATE.
WE ALSO GO TO THEIR HOME TO
COLLECT DATA, TO SAVE THEIR
TRAVEL AND TRANSPORTATION AND
TRY TO STIMULATE THAT WE CAN
REACH TO YOU.
YOU DON'T HAVE TO TRAVEL.
AND SO WE CAN BRING EVERYTHING
TO YOU BUT YOU CAN ALSO
PARTICIPATE AND BENEFIT FROM THE
STUDY.
>> THANK YOU, THAT'S GREAT.
>> THANK YOU FOR ALL THE
SPEAKERS BUT I WOULD JUST LIKE
TO ADD ON WHAT DR. JIANHUA WU
SAID.
I THINK YOU'RE JUST PRACTICING
WHAT WE HAVE BEEN HEARING,
ESPECIALLY DURING OUR LISTENING
SESSION AND ALSO YESTERDAY IS
HAVING THE BENEFIT OF HAVING A
DIVERSE RESEARCH TEAM.
AND ALSO FROM PARTICIPANTS WHO
WANT TO SEE MEMBERS OF THEIR
COMMUNITY INTEGRATED AS PART OF
THE RESEARCH TEAM.
SO THANK YOU FOR YOUR WORK ON
THAT AND IN FACT, WHAT YOU HAD
MENTIONED IS THERE IS A TONE FOR
THAT.
IT'S CALLED REVERSE MENTORING.
AND I HOPE THAT IS WHAT WE CAN
ACHIEVE FOR ENCOURAGING OUR
TRAINEES WHO REALLY NEED
MENTORSHIP AND SPONSORSHIP TO
ADVANCE.
AND IF WE WANT TO DIVERSIFY OUR
TRAINEES, SO THAT THEY CAN
BECOME THAT EARLY-STAGE
INVESTIGATOR, THE NEW
INVESTIGATOR, THAT PIPELINE, WE
NEED ACTIVE MENTORS AND SPONSORS
FROM THE BEGINNING.
AND REALLY GIVING THEM CENTER
STAGE.
SO I REALLY APPRECIATE.
AND YOU ARE ONE OF THE AS YOU
SAID -- IT DOESN'T REALLY HAVE
TO DO WITH LUCK.
IT'S WHAT YOU ARE DOING FOR THE
LAST 15 YEARS THAT YOU WERE
COMPETITIVE FOR THAT COSWD-DEIA
MENTORSHIP SUPCOMMENT ARE ONE OF
THE FIRST RECIPIENTS AND
FORTUNATE THAT INCLUDE COULD
FIND YOUR SUPPLEMENT.
>> THANK YOU.
I GUESS WE DON'T HAVE A LOT OF
TIME BUT JUST WANT TO DO A FINAL
CHECK TO SEE WHETHER OR NOT
THERE ARE ADDITIONAL QUESTIONS?
OKAY.
I THINK WE ARE GOOD TO HAVE OUR
BREAK.
>> YES, SO WE WILL TAKE A
10-MINUTE BREAK AND COME BACK AT
1:30 EASTERN TIME P.M. FOR OUR
SESSION 5.
THANK YOU.
>>WELCOME BACK
EVERYONE FOR SESSION 5.
LET ME QUICKLY INTRODUCE THIS
SESSION.
WE ARE GOING TO LAUNCH FROM
OTHER PROGRAMS ON ENHANCING
PARTICIPANT DIVERSITY IN
CLINICAL RESEARCH.
THE FIRST PROGRAM THAT WE WILL
HEAR FROM IS FROM THE
RECRUITMENT TEAM OF THE
ALZHEIMER'S DISEASE BIOMARKER
CONSORTIUM DOWN SYNDROME, ABC
DS.
DR. ANNIE COHEN HAD TO EXCUSE
HERSELF FOR A FAMILY EMERGENCY
SO I WILL BE INTRODUCING INST
INSTEAD.
DR. HARTLEY IS THE DISTINGUISHED
CHAIR OF HUMAN ECOLOGY AND
PROFESSOR IN THE HUMAN
DEVELOPMENT AND FAMILY STUDIES
DEPARTMENT AT THE UNIVERSITY OF
WISCONSIN-MADISON.
NEXT WILL BE DR. CAREY GLEASON,
A FACULTY MEMBER AT THE DIVISION
OF GERIATRICS AND GERONTOLOGY AT
THE DEPARTMENT OF MEDICINE.
AND LEADS THE INCLUSION OF
UNDERREPRESENTED GROUPS CORE AT
THE WISCONSIN ALZHEIMER'S
DISEASE RESEARCH CENTER.
WE WILL BE JOINED BY NICOLE
SHIREE WHITMOYER, THE PROJECT
MANAGER FOR DR. HARTLEY'S LAB AT
THE UNIVERSITY OF
WISCONSIN-MADISON AND ALSO THE
STUDY COORDINATOR FOR ABC DS.
SHE SERVICE AS THE PRIMARY
LIAISON BETWEEN COMMUNITY
PARTNERS AND THE WISCONSIN SITE
OF THE ABC DS STUDY.
NEXT WE WILL BE JOINED IN THE
SAME TEAM, DR. MARIA NOGUERON
WHO IS THE COMMUNITY OUTREACH
SPECIALIST AT THE CENTER.
AS A LATINA AND A MOTHER TO A
DAUGHTER WITH DOWN SYNDROME, SHE
HAS DIRECT EXPERIENCE WITH
UNDERREPRESENTATION OF HER
COMMUNITY IN RESEARCH PROGRAMS
AS RESEARCHERS OR COMMUNITY
PARTICIPANTS.
LAST BUT NOT LEAST, WE WILL BE
JOINED BY SELF-ADVOCATE,
Mr. DANNY CHAFETZ WHO IS A
23-YEAR-OLD PERSON WITH DOWN
SYNDROME AND A COMMUNITY
OUTREACH SPECIALIST.
HE WILL BE JOINED BY HIS MOTHER,
WHO WILL BE CHEERING HIM ON.
THANK YOU.
>> HELLO, EVERYONE AND GOOD
AFTERNOON.
IF YOU ARE ON THE EAST COAST OR
GOOD MORNING IF YOU'RE ON THE
WEST COAST.
I WANT TO THANK THE CONFERENCE
ORGANIZERS FOR THE INVITATION TO
BE HERE TODAY.
SO I'M CAREY GLEASON, FROM THE
UNIVERSITY OF WISCONSIN, PART OF
THE ALZHEIMER'S DISEASE RESEARCH
CENTER AND I'M EXCITED TO BE
PART OF THE ADORE TEAM WITH THE
ABC DS PROJECT.
SO, NEXT SLIDE, PLEASE.
SO THIS PROVIDES AN OUTLINE OF
30 MINUTES WITH YOU THIS
AFTERNOON.
THE FIRST PART I'LL SPEND ABOUT
10 MINUTES TALKING ABOUT SOME OF
THE BARRIERS TO RECRUITMENT AND
INCLUSIVE RESEARCH, AND PROVIDE
A THEORY FOR HOW TO ADDRESS
THOSE BARRIERS WITH A MODEL OF
ENGAGEMENT AND INVESTMENT.
THEN I'LL TURN THINGS OVER TO MY
COLLEAGUE WHO WILL BE TALKING
ABOUT THE IMPLEMENTATION OF THIS
THEORY WITH THE ADORE CORE, AND
THEN FINALLY WE'RE GOING TO
LEARN HOW THIS IS GOING IN THE
COMMUNITY SETTINGS FROM OUR
PARTNERS IN THE COMMUNITY
DR. MARIA AND Mr. CHAVEZ.
SO LET ME GO AHEAD AND GO TO THE
NEXT SLIDE, PLEASE.
I'D LIKE TO START WITH OUR
TAKE-HOME MESSAGE.
SO IF YOU HEAR NOTHING ELSE FROM
MY TIME WITH YOU, I HOPE THAT
YOU TAKE AWAY THESE TWO KEY
MESSAGES.
THAT WHAT WE REALLY NEED TO DO
IN ORDER TO SUCCEED AT INCLUSIVE
RESEARCH AND WE NEED TO REDEFINE
RECRUITMENT AS ENGAGEMENT.
ENGAGEMENT IS THE BEGINNING, THE
MIDDLE AND THE END OF THIS WORK.
SO INSTEAD OF THINKING ABOUT
SIMPLY A UNIT DIRECT --
UNIDIRECTIONAL RELATIONSHIP WITH
COMMUNITY, WE THINK ABOUT
ENGAGEMENT.
YOU BUILD RELATIONSHIPS.
YOU INVEST TIME AND ENERGY.
AND THIS LOOKS DIFFERENT THAN
MAYBE A TYPICAL TYPE OF ACADEMIC
SETTING.
AND THIS IS WHERE THE NEXT POINT
THAT I WANT TO MAKE IS THAT THE
RESEARCH WORLD IN ACADEMIA HAS A
CULTURE.
AND THAT CULTURE IS OFTENTIMES
NOT ALWAYS COMPATIBLE WITH
COMMUNITY WORK.
SO THIS IS A PAPER THAT I WANT
TO HIGHLIGHT FROM A DEAR FRIEND
OF MINE WHO DESCRIBED THIS
PHENOMENON WITHIN THE CONTEXT OF
IRBs AND TALKING ABOUT THIS
FROM THE HIDDEN HE GEMNY OF THIS
IDEA THAT THE WAY OF DOING
THINGS IN ACADEMIA IS THE BEST
WAY AND THE ONLY WAY.
WHEN IN FACT, IT DOESN'T ALWAYS
WORK WELL WITH COMMUNITY
ENGAGEMENT.
SO I KNOW DR. MARIA WILL POINT
OUT ONE OF THOSE WAYZ IS
SOMETIMES WE COME IN WITH OUR
TIMELINE AND IN REALITY,
COMMUNITY WORK HAS A DIFFERENT
TIMELINE.
THAT'S JUST ONE OF MANY TYPES OF
CULTURE CLASH THAT IS YOU'LL
EXPERIENCE.
AND ONCE WE RECOGNIZE THAT WE
HAVE A CULTURE, WE CAN RECOGNIZE
THAT WE DON'T HAVE TO ALWAYS
APPROACH THINGS WITH OUR
CULTURAL LENSE.
SO THOSE ARE MY TWO TAKE-HOME
MESSAGES.
NEXT SLIDE, PLEASE.
I WANT TO JUST TAKE ONE BRIEF
MOMENT TO TALK ABOUT WORDS.
AND THE WORDS I'LL BE USING AND
PUT THAT INTO CONTEXT.
SO I AVOID THE WORD, MINORITY
AND INSTEAD USE, OFTENTIMES, MY
NOR TIESED OR RACIALIZED, TO
RECOGNIZE THIS IS A STATUS
IMPOSED ON OTHER PEOPLE BASED ON
HOW THEY LOOK OR THEIR
APPEARANCES OR WHERE THEY LIVE,
PERHAPS.
AND THAT THIS IS LESS OF A
BIOLOGICAL CHARACTERISTIC THAN
IT IS A SOCIAL CHARACTERISTIC.
IN MUCH OF MY WORK, I FOCUS ON
GROUPS, RACIAL AND ETHNIC GROUPS
WHO HAVE BEEN MARGINALIZED IN
PARTICULAR BLACK
AFRICAN-AMERICAN, INDIGENOUS,
LATINO, AND I USE THE WORD, BIPO
DO.
DESCRIBE THOSE COMMUNITIES.
IT'S A TERM TA CAPTURED THE IDEA
THAT THESE ARE STATUS THAT ARE
IMPOSED ON OTHER PEOPLE BY
OFTENTIMES A DOMINANT CULTURE.
THERE ARE OTHER GROUPS WHO ARE
UNDERREPRESENTED AS WELL, NOT
JUST RACIAL AND ETHNIC GROUPS.
THERE ARE SEXUAL ORIENTATION,
GENDER IDENTITY GROUPS THAT ARE
UNDERREPRESENTED IN RESEARCH.
GROUPS WHO ARE INDIVIDUALS FROM
LOWER ECONOMIC STRATA.
AND ALSO RURAL POPULATIONS ARE
OFTENTIMES EXCLUDED FROM OUR
RESEARCH ENGAGEMENT EFFORTS.
NEXT SLIDE, PLEASE.
SO, LET'S TAKE STOCK AND LOOK AT
HOW WE HAVE DONE IN THE FIELD.
AS THE FIELD IN ALZHEIMER'S
DISEASE TREATMENTS OR THERAPIES
MOVES FORWARD, IN THE LAST YEAR
THERE WAS APPROVAL OF THE
FIRST-EVER DISEASE-MODIFYING
DRUG.
MUCH OF WHAT WE HAD OFFERED FOR
TREATMENT WAS RELATED TO
TREATMENT OF SYMPTOMS AND AGAIN,
NOW THE FIELD IS REALLY SHIFTED
TO THIS IDEA OF
DISEASE-MODIFYING.
REALLY IMPORTANT DEVELOPMENT.
ONE THAT COULD BE A GAME
CHANGER.
LOOK AT HOW WE DID IN TERMS OF
OUR INCLUSION.
THESE WERE THE TWO STUDIES THAT
LED TO THE APPROVAL OF THIS.
99 INDIVIDUALS OF THE 3,285
INDIVIDUALS IDENTIFIED AS HIS
SPAN -- 19 IDENTIFIED AS BLACK.
ONE AMERICAN INDIAN ALASKA
NATIVE INDIVIDUAL AND ONE NATIVE
AWHYIAN PACIFIC ISLANDER.
IN TERMS OF RACIAL DIVERSITY, IT
WAS AGAIN, WE WERE NOT
ACCOMPLISHING DIVERSE OR
INCLUSIVE RESEARCH.
NEXT SLIDE, PLEASE.
SO YOU MAY SAY, WHY WE
OFTENTIMES, SAY WHY DO THEY NOT
ENROLL?
LIKE PUTTING THIS BACK ON TO
MARGINALIZED COMMUNITIES.
AND I WOULD SAY, ACTUALLY THAT'S
NOT THE ISSUE.
THAT IF WE LOOK AT WHEN WE DON'T
OR DO RESEARCH THAT DOESN'T
REQUIRE INFORMED CONSENT,
AFRICAN-AMERICANS WERE
DISPROPORTIONATELY ENROLLED IN
THOSE STUDIES.
THIS IS ONE EXAMPLE OF AN
EXEMPT -- INFORMED CONCEPT
EXEMPT STUDY AND IT CERTAINLY IS
NOT THAT AFRICAN-AMERICANS ARE
NOT WILLING OR -- EXCUSE ME, NOT
OPEN OR NOT AVAILABLE TO
PARTICIPATE, IT'S JUST SIMPLY WE
HAVE NOT DONE THE WORK OF
ENGAGING SO THAT INDIVIDUALS
WILL FREELY VOLUNTEER TO JOIN
AND ARE INCLUDED FULLY IN THAT
RESEARCH.
NEXT SLIDE, PLEASE.
SO WHY IS THAT?
WHY ARE WE OVER ENROLLING IN
CASES WHERE THERE IS NOT A
CONSENT PROCESS INVOLVED AND
UNDER ENROLLING WHEN WE HAVE TO
GET INFORMED CONSENT?
MANY PEOPLE HAVE HEARD ABOUT THE
TUSKEGEE SYPHILIS STUDY.
THERE IS A DEGREE OF MISTRUST
BECAUSE OF OUR BAD BEHAVIOR AS
RESEARCHERS.
THERE IS A CULTURE OF MISTRUST.
AND WE'D LIKE TO THINK THAT THIS
IS SIMPLY SOMETHING THAT IS IN
THE PAST.
NEXT SLIDE, PLEASE.
HOWEVER, THERE ARE
UNFORTUNATELY, PLENTY OF
EXAMPLES OF MORE RECENT MISDEEDS
IN RESEARCH OR JUST NEIGHBOR
IT'S NOT ABOUT AN INTENTIONAL,
IT'S AN OVERSIGHT AND AGAIN THAT
HE GEMNY OF THE ACADEMIC LENSE
AND THAT THAT WE DON'T LOOK AT
THINGS FROM THE PERSPECTIVE OF
COMMUNITY MEMBERS.
THESE ARE JUST TWO EXAMPLES OF
RECENT EVENTS THAT ENCOURAGE
PEOPLE TO READ ABOUT SO YOU KNOW
ABOUT THESE INCIDENCES.
SO THE BARRIERS TO ACCESSING
CLINICAL RESEARCH, MANY PEOPLE
CAN TALK ABOUT THE
TRANSPORTATION ISSUES, OR
SCARCITY ISSUE.
I WANT US TO FOCUS, TO MAKE A
BIG DIFFERENCE IN ADDRESSING
CULTURAL SAFETY OF RESEARCH.
AND HOW DO WE GO ABOUT DOING
THAT?
NEXT SLIDE, PLEASE.
THERE ARE MANY -- I THINK A BIG
PART OF THIS IS FIRST
ACKNOWLEDGING THAT MISTRUST AND
ACCESS ARE LIMITATIONS AND --
ADVANCE, PLEASE.
AND THAT WHAT WE DO AS
RESEARCHERS IS ACKNOWLEDGE OUR
RESEARCH CULTURE AND REALLY TRY
TO ADAPT OUR RESEARCH CULTURE SO
THAT WE DON'T PUT OUR NEEDS AT
THE CENTER OF THE PROJECT BUT
MOVE IT TO -- MOVE THE CENTER TO
BE PARTICIPANT'S EXPERIENCES.
NEXT SLIDE, PLEASE.
SO THERE IS SO MANY MODELS OF
RESEARCH ENGAGEMENT.
THESE ARE JUST A FEW.
I DON'T WANT TO -- MANY PEOPLE
ARE DOING THIS AND DOING IT
WELL.
SO I JUST WANT TO ACKNOWLEDGE
THE MANY COLLEAGUES THAT ARE
DOING THIS WORK IN A REALLY --
DESERVE RESPECT IN WHAT THEY ARE
DOING FOR COMMUNITY ENGAGED
RESEARCH.
NEXT SLIDE, PLEASE.
SO A MODEL THAT WE'RE USING AT
OUR CENTER AND ALSO ONE THAT I
HAVE TALKED ABOUT WITH THE ADORE
CORE AND THEY HAVE ADAPTED IT,
IS WHAT WE DO IS WE ENGAGE WITH
COMMUNITY AND WE DO SO IN STEPS
AND WE FOLLOW THE LEAD OF THE
COMMUNITY FOR THE LARGE PART.
SO WE RESPOND FIRST TO THE
COMMUNITY NEEDS AND IT MAY OR
MAY NOT BE DIRECTLY RELATED TO
WHAT YOUR GOALS ARE FOR
RECRUITMENT.
YOU MIGHT WANT TO TALK ABOUT
DOWN SYNDROME AND COMMUNITY
ADVOCATES MAY ACTUALLY WANT TO
TALK ABOUT I THINK SO THIS LIKE
MANAGING BLOOD PRESSURE.
OR CAREGIVER RESOURCES OR FAMILY
RESOURCES.
RESPOND TO THAT AND THAT'S WHAT
I REALLY ENCOURAGE YOU TO DO.
DON'T JUST SAY THIS IS NOT IN MY
WHEEL HOUSE.
YOU SAY I WILL CALL IN
COLLEAGUES WHO KNOW ABOUT THIS.
YOU BUILD ADVOCACY.
SO I'M SURE THAT DR. MARIA --
>> DR. GLEASON, WE JUST GOT A
NOTE FROM THE INTERPRETER TO GO
A LITTLE BIT SLOWER.
SORRY FOR THE INTERRUPTION.
>> SORRY.
SO TO BUILD COMMUNITY ADVOCATES,
PEOPLE IN THE COMMUNITY WHO CARE
ABOUT THIS WORK IN A MEANINGFUL
WAY, ARE YOUR BEST ADVOCATES TO
ADVISE AND COUNCIL YOU TO DO THE
BEST POSSIBLE WORK.
I REALLY ENCOURAGE PEOPLE TO
THINK ABOUT HIRING FROM THE
COMMUNITY.
WE, AS RESEARCHERS OFTENTIMES,
WE HAVE AGAIN AN APPROACH THAT
WE HAVE THAT HAS WORKED IN THE
PAST BUT LET ME TELL YOU, WHAT
WE HAVE DONE IN THE PAST HAS NOT
WORKED FOR FULLY-INCLUSIVE
RESEARCH.
AND THEN, FINALLY, YOU REACH A
PHASE OF SORT OF RECIPROCITY
WHERE YOUR COMMUNITY-ENGAGED
PARTNERS ARE WILLING TO TRUST.
THEY HAVE THE TRUST IN THE
PROGRAM AND YOUR TEAM TO
ENCOURAGE PARTICIPATION FROM
THOSE WITH WHOM THEY WORK IN THE
COMMUNITY.
NEXT SLIDE, PLEASE.
SO, THIS IS JUST ONE EXAMPLE OF
THIS.
MY PROJECT AFRICAN-AMERICANS
FIGHTING ALZHEIMER'S DISEASE IN
MID LIFE.
THIS IS OUR BIG INVESTMENT IS
ENGAGEMENT AND THEN ENROLL
INDIVIDUALS IN TWO PARENT
STUDIES AND THEN AT THE BACK
END, WE FOCUS ON SCIENCE THAT
ENRICHES AND IMPROVES LIVES OF
THOSE TOUCHED BY ALZHEIMER
DISEASE I IN THE AFRICAN
COMMUNITY.
NEXT SLIDE, PLEASE.
SO ONE OF THE WAYS QUI THIS IS
WE INVEST HEAVILY IN
PROGRAMMING.
SO THIS IS OUR GET MOVING
EXERCISE CLASS.
THERE IS NO EXPECTATION OF
RESEARCH PARTICIPATION TO BE
PART OF THIS PROGRAM.
SOME PEOPLE PARTICIPATE.
SOME PEOPLE CHOOSE NOT TO.
IN EITHER CASE YOU ARE INVITED
TO EXERCISE.
NEXT SLIDE, PLEASE.
WE DO COMMUNITY MEMORY
SCREENINGS.
AND AGAIN, WE DO EDUCATION
EVENTS, MEMORY SCREENINGS.
WE RESPONDED TO THE REQUEST TO
THE COMMISSION ON AGING, AGAIN
TO GIVE FIRST.
NEXT SLIDE, PLEASE.
WE BUILD ADVOCACY.
THE BLACK LEADERS OF BRAIN
HEALTH IS ONE GROUP THAT WE
HAVE -- COMMUNITY LEADERS WHO
CARE ABOUT THIS WHO ARE INVESTED
WHO CAN REALLY ADVICE US AND
KEEP OUR FEET ON THE GROUND IN
TERMS OF WHAT WE'RE DOING AND
WHAT WE WANT TO ACCOMPLISH.
NEXT SLIDE, PLEASE.
AND HERE IS OUR COMMUNITY
ADVISORY BOARD.
WE ARE IN NORTHERN WISCONSIN,
ONE OF 11 TRIBES THERE AND THEY
ARE KEY ADVISERS FOR OUR WORK IN
THE ONIDA COMMUNITY.
SO AGAIN, THIS IS JUST ONE
EXAMPLE OF COMMUNITY ENGAGEMENT.
NEXT SLIDE.
BUT I WANT TO EMPHASIZE AGAIN,
THINK BROADLY ABOUT WHAT
INVESTMENTS YOU MAKE.
BE PRE FIRED ANSWER QUESTIONS
LIKE HOW DOES THIS BENEFIT THE
COMMUNITY?
HOW WILL THE DATA YOU COLLECT
COME BACK AND SERVE THE
COMMUNITY?
LOOK AT YOUR HIRING PRACTICES.
INVEST IN BLACK AND INDIGENCES
BUSINESSES IN THE CASE WHAT WE
ARE DOING WITH OUR ENGAGEMENT
WITH BLACK AND INDIGENOUS
COMMUNITIES.
INVEST IN TRAINEES FROM THOSE
COMMUNITIES.
PEOPLE WANT TO SEE THE RESEARCH
GO FORWARD WITH PEOPLE WHO LOOK
LIKE THEM.
AND I WAS HAPPY TO CATCH THE
TAIL END OF THE CONVERSATION
ABOUT BUILDING ADVOCACY OR
BUILDING -- STRENGTHENING THE
BENCH OF RESEARCHERS COMING UP
WHO ARE COMING FROM THESE
COMMUNITIES.
INCLUDE TRAINEES AND STAFF FROM
THE COMMUNITIES BEING STUDIED.
NEXT SLIDE, PLEASE.
SO JUST AGAIN, LET'S JUST
ACKNOWLEDGE OUR CULTURE AS
RESEARCHERS AND HOW WE TEND TO
APPROACH THINGS IN A WAY THAT WE
PRIORITIZE OUR CULTURE AS THE
WAY TO DO THINGS THAT WE THINK
DIFFERENTLY ABOUT ENGAGEMENT.
AND YOU'RE GOING TO HEAR A LOT
MORE ABOUT HOW THIS PLAYS OUT
BOTH IN THE IMPLEMENTATION WITH
THE ADORE CORE AS WELL AS WHAT
IT LOOKS LIKE FROM THOSE
ACTUALLY DOING THE WORK IN THE
COMMUNITY.
THE TRUE EXPERTS.
AND WITH THAT, I BELIEVE THAT'S
MY LAST SLIDE.
NEXT SLIDE, PLEASE.
I WANT TO JUST ACKNOWLEDGE MY
PARTNERS IN WISCONSIN WITH THE
ADORE CORE: AND YOU GET TO HEAR
FROM SEEING AN WITH A
LAST-MINUTE CHANGE OF SPEAKERS.
-- SIGAN.
I'LL TURN THINGS OVER TO MY
COLLEAGUE, DR. HARTLEY.
THANK YOU.
>> DR. SIGAN HARTLEY:
>> --
>> JUST A REMINDER BEFORE YOU
BEGIN, TO GO A LITTLE BIT SLO
SLOWER.
>> ANNA I'M NOT ANNIE COHEN.
I'M SEGAN HARTLEY.
TODAY I'M GOING TO GIVE YOU AN
OVERVIEW OF THE ADORE CORE BUT
THIS EFFORT IS LED BY DR. COHEN.
SO, THE ADORE CORE STANDS FOR
ALZHEIMER'S DISEASE IN DOWN
SYNDROME OUTREACH, RECRUITMENT
AND ENGAGEMENT CORE.
AND AS THIS IS PART OF A LARGER
PROJECT, SO THE LARGER PROJECT
WE REFER TO AS ABC-DS, WHICH
STANDS FOR ALZHEIMER'S BIOMARKER
CONSORTIUM DOYNE SYNDROME.
AND IN DEVELOPING THIS LARGE
GRANT, AT THE VERY ONSET THERE
WAS A BIG EMPHASIS ON MAKING
SURE WE HAD A CORE THAT WAS
SPECIFICALLY DEVOTED TO
PARTNERING WITH COMMUNITIES.
WHEN WE THINK ABOUT BOTH SORT OF
WHAT WE'RE GOING TO DO, THE
QUESTIONS, BUT ALSO IN TERMS OF
ENGAGEMENT IN RESEARCH AND THE
EDUCATION WE PROVIDE BACK.
NEXT SLIDE, PLEASE.
SO THE THREE BIG AIMS OF THE
ADORE CORE ARE ONE, TO GENERATE
AND DISSEMINATE EDUCATIONAL
MATERIALS REGARDING THE
IMPORTANCE OF RESEARCH AND
RESEARCH METHODS TARGETING
ALZHEIMER'S DISEASE AND ADULTS
WITH DOWN SYNDROME.
SO THIS FIRST GOAL WAS TO SAY
THAT WHEN WE THINK ABOUT
RESEARCH IN ALZHEIMER DISEASE,
THERE IS A LOT OF JARGON.
THERE IS A LOT OF MEDICAL TERMS.
THERE IS A LOT OF PROCEDURES
WHICH OFTEN WE FORGET THAT WE
SORT OF NEED TO DEMYSTIFY.
SO MAKE SURE THAT THE RESEARCH
IS APPROACHABLE, THAT WE CAN
HELP SORT OF EDUCATE THE
COMMUNITY ABOUT THESE METHODS
AND WHAT RESEARCH IS.
SO ONE OF THE BIG GOALS WAS JUST
TO SORT OF PROVIDE THAT
EDUCATION ABOUT WHAT IS THIS
RESEARCH?
WHY IS IT IMPORTANT?
AND WHAT DOES IT INVOLVE?
THE SECOND AIM WAS A LITTLE BIT
MORE SPECIFIC AND THAT WAS TO
GENERATE AND DISSEMINATE
EDUCATIONAL MATERIALS REGARDING
BRAIN AGING IN ALZHEIMER DISEASE
AND DOWN SYNDROME SPECIFICALLY
TO UNDERSERVED COMMUNITIES WITH
THE FOCUS ON THOSE COMMUNITIES
THAT WERE REALLY CLOSE TO A LOT
OF OUR RESEARCH SITES.
SO ONE OF THE THINGS THAT WE
WANTED TO DO IS WE WANTED EACH
SITE, SO THERE ARE 8 DIFFERENT
7/8 THAT ARE PART OF ABC-DS, TO
THINK ABOUT THIS AT THEIR LOCAL
LEVEL.
WHO ARE THESE UNDERSERVED
COMMUNITIES THAT THEY COULD
BUILD PARTNERSHIPS WITH AND THAT
THEY COULD INCLUDE AS PART OF
THEIR RESEARCH AND OUTREACH TEAM
TO PARTNER WITH.
THE THIRD AIM WAS THEN TO
INCREASE RECRUITMENT OF
INDIVIDUALS WITH DOWN SYNDROME
INTO ABC-DS COHORT FROM DIVERSE
POPULATIONS AND TO NOT ONLY GIVE
THEM TO ENROLL IN OUR STUDIES,
BUT ALSO TO GET THEM TO STAY IN
THE STUDIES TO, MAKE SURE IT'S A
GOOD EXPERIENCE AND THAT WE'RE
NOT JUST SORT OF TAKING AND
GETTING THEM TO BE PART OF THE
STUDIES.
BUT WE ARE GIVING BACK AND IT'S
A VALUABLE PARTNERSHIP THEY WANT
TO KEEP ONGOING OVER TIME.
NEXT SLIDE, PLEASE.
SO HOW DO WE DO THIS?
WELL, EACH OF THOSE 8 ABC-DS
RESEARCH SITES HAD MONEY WITHIN
THE CORE TO COVER THE COST OF A
FULL-TIME EMPLOYEE WHO WOULD
ENGAGE WITH ALL THE OTHER CORES
AND A CORE LEADER, DR. COHEN,
AROUND THESE ACTIVITIES.
AND ONE OF THE THINGS THAT WAS
FIRST ESTABLISHED WAS AN IDEA WE
NEEDED A PARTNERSHIP WITH A
COMMUNITY RESEARCH ADVISORY
BOARD.
SO ON THIS BOARD ARE SELF
ADVOCATES, PARENTS, SIBLINGS AND
THE IDEA IS THAT THIS IS THE
BOARD THAT HELPED GUIDE OUR
RESEARCH SO WE CAN SORT OF
UNDERSTAND WHAT EDUCATIONAL
MATERIALS WOULD BE HELPFUL.
WHAT ADDITIONAL RESEARCH
QUESTIONS SHOULD WE BE THINKING
ABOUT?
HOW DO WE THINK ABOUT FLYERS?
HOW DO WE TALK ABOUT THESE
METHODS?
SO TWO OF THE THINGS THAT THIS
ADVISORY BOARD IS HELPING WITH
IS ONE, COMMUNITY-LED TRAININGS
FOR THE BROADER ADORE TEAM.
SO TALKING FROM THEIR
PERSPECTIVE ABOUT THINGS THAT
THE COMMUNITY CARES ABOUT,
THINGS WE NEED TO THINK ABOUT.
AND SPECIFICALLY ONE THING THAT
WE GOT A LOT OF FEEDBACK IS A
RESEARCH FLYER.
SO EARLY ON, WE HAD WHAT WE
THOUGHT WAS A WONDERFUL FLYER T
HAD LOTS OF COLOR, LOTS OF
INFORMATION ABOUT THE STUDY
REQUIREMENTS AND VERY QUICKLY WE
GOT FEEDBACK THAT NO, NO, NO
WHAT WE REALLY NEEDED TO HAVE IS
A MESSAGE ABOUT WHY FAMILIES
SHOULD BE PART OF THE STUDY.
WHY IS IT MEANINGFUL?
WHAT IS THE END GOAL?
THAT WAS REALLY SOMETHING WE
DIDN'T ACTUALLY HAVE ON THE
FLYER.
THIS GROUP ALSO PARTNERS WITH
OTHER DOWN SYNDROME
ORGANIZATIONS SO ONE OF THE BIG
PARTNERS IS THE NATIONAL DOWN
SYNDROME SOCIETY.
EACH OF THE LOCAL SITES ALSO
IDENTIFIES THEIR LOCAL PARTNERS
SO FOR EXAMPLE, IN WISCONSIN, WE
PARTNER WITH SPECIAL OLYMPICS
WHO SERVES THE MADISON BUT ALSO
THE MILWAUKEE AREA AND ALSO
PARTNER WITH LOCAL GROUPS WHO
ARE DOING EVENTS -- KNOWA EVENT
AT THE ZOO IN MILWAUKEE THIS
WEEKEND.
LISTENING SESSIONS.
WHAT ARE THE NEEDS OF THIS
COMMUNITY?
HOW CAN WE PARTNER WITH THEM?
AND THEN WORKING GROUPS.
SO THESE WORKING GROUPS COVER
THINGS LIKE SOCIAL MEDIA, HOW DO
WE GET WORD OUT?
HOW ARE WE SORT OF MESSAGING AND
SPREADING EDUCATION?
NEWSLETTERS, BULLETINS.
ALSO, INFORMATION ON SOME OF THE
RESEARCH METHODS WE USE THAT
OFTEN CAN BE SORT OF SEEMINGLY
SCARIER UNKNOWN.
SO ONE EXAMPLE IS BRAIN
DONATION.
AND THINKING ABOUT HOW TO
PROVIDE SOME EDUCATION AND
MATERIALS ABOUT WHAT THIS IS.
WHY ARE WE INTERESTED IN IT?
WHAT IS THE BENEFITS TO THE
COMMUNITY?
AND THEN SPECIFICALLY WE HAVE
WORKING GROUPS RELATED TO
UNDERREPRESENTED GROUPS SO AGAIN
LOCALLY HERE IN WISCONSIN, WE
HAVE REALLY FOCUSED ON THE
LATINO GROUP AS A COMMUNITY WHO
HAS BEEN UNDERRESEARCHED AND
UNDERSERVED IN OUR COMMUNITY
THAT WE ARE PARTNERING WITH.
SO AS I MENTIONED, EACH SITE GOT
MONEY TO COVER THE ONE FULL-TIME
EMPLOYEE.
EARLY ON WE CONSULTED WITH
DR. GLEASON TO THINK ABOUT HOW
WE WANTED TO MAXIMIZE OUR
FUNDING IN WISCONSIN.
SO HERE WHAT WE DECIDED IS WE
BROKE UP THAT MONEY AND ACTUALLY
DIVIDED IT AMONG THREE DIFFERENT
TEAM MEMBERS WHO WE THOUGHT
WOULD BE A MORE EFFECTIVE TEAM
AND HOPING TO REACH OUR GOALS.
AND SO, WHAT WE ACTUALLY WANTED
TO DO IS HAVE MEMBERS OF THE
COMMUNITY WE WANT TO PARTNER
WITH BE MEMBERS OF OUR OUTREACH
TEAM.
AND WE FELT VERY STRONGLY THEY
NEEDED TO BE PAID MEMBERS.
AND SO THAT IS WHAT WE DID WITH
THESE FREE POSITION 3 POSITIONS.
I'M GOING TO TURN IT OVER TO
DR. A NOG NOG TO TALK ABOUT HER
EXPERIENCES.
>> MY NAME IS MARIA NOGUERON AND
I'M A LATINA MOTHER OF A YOUNG
WOMAN WITH DOWN SYNDROME.
SO WE ARE STAKEHOLDERS.
WE REALLY WANT TO BE PART OF
THIS.
AND I THINK THE REASON I WAS
SELECTED IS BECAUSE I'M VERY
ACTIVE IN MY COMMUNITY SO THEY
CAN RECOGNIZE ME AS AN ADVOCATE
THAT HAS BEEN DOING THIS PEER
RELATIONSHIPS WITH OTHER PARENTS
FOR A LONG TIME.
AND THAT HAVE BEEN NOT ONLY FOR
DOWN SYNDROME BUT FOR OTHER
DISABILITIES AND THAT WAS VERY
IMPORTANT.
SO I WOULD SAY THAT WHEN YOU
IDENTIFY STAKEHOLDERS, YOU WANT
PEOPLE -- NOT ONLY BECAUSE OF
LANGUAGE OR THE LAST NAME OR
SKIN COLOR, BUT ALSO THAT THE
COMMUNITY KNOWS.
THAT THEY HAVE BEEN DOING THIS
OUT OF FOCUS, WHICH IS
IMPORTANT.
I ALSO HAVE LEARNED, AND THIS IS
SOMETHING VERY IMPORTANT, THAT
DISSEMINATION AND EDUCATION ARE
KEY ELEMENTS OF ADDRESSING ANY
POPULATION.
BUT PARTICULARLY UNDERSERVED
POPULATIONS THAT MAY NOT HAVE
HAD GOOD EXPERIENCES WITH
BIOMEDICAL COMMUNITY EITHER
THROUGH HEALTH CARE SERVICES OR
THROUGH RESEARCH.
AND I'M NOT TALKING ABOUT JUST
TO TALK ABOUT THE IDEA OF THIS
HISTORICAL OR ALL OF THIS OTHER
EVIDENCE, BUT JUST SIMPLY LIKE
IF A FAMILY DOESN'T HAVE
TRANSPORTATION, THE SON IS
THROWING A TANTRUM BECAUSE HE
DOESN'T WANT TO GO TO THE DOCTOR
AND YOU MISSED YOUR BUS, YOUR
RIDE TO THE DOCTOR AND YOUR
APPOINTMENT HAS BEEN CANCELED.
AND YOUR FAMILY WHO RECEIVES
MEDICAID OR SELF ADVOCATES AND
TRANSPORTATION IS A PROBLEM AND
MEDICAID.
WHO IS GOING TO BE PAYING FOR
THIS?
WHAT IF I LOSE MY JOB?
AND I GET THOSE ARE VERY
IMPORTANT CURRENT EXPERIENCES
THAT NEED TO BE THOUGHT WHEN WE
ARE APPROACHING OTHER
POPULATIONS.
WHAT ARE THE LOGISTICS TO VISIT?
LAB RESPONSE HAS BEEN OBVIOUSLY
TO CREATE A SPANISH-SPEAKING
LINE OF COMMUNICATION AND
ESTABLISH THAT PEOPLE DESERVE
COMPENSATION FOR THEIR TIME AND
PARTICIPATION BECAUSE THEY ARE
WELCOME AS PARTNERS AND THEN
THEY CAN ACCOMMODATE THEM BY
THINKING OUTSIDE OF THE BOX.
LIKE OKAY, THEY HAVE TO COME TWO
DAYS FOR THE LAB, BUT THEY
MAY -- WHAT IF WE JUST DECIDE TO
DO SOME PART OF THE WRITTEN,
PSYCHOLOGICAL, COGNITIVE --
MAYBE CAN BE DONE IN THEIR
COMMUNITY, MAYBE DONE AT HOME
WHEN THEY WILL FEEL MORE
COMFORTABLE AND JUST BRING THEM
TO THE CENTER WHEN WE REALLY
NEED TO BE HERE.
AND THAT'S VERY IMPORTANT
BECAUSE IT'S A WAY TO LOOKING AT
THE LOGISTICS INTO THIS
POPULATION AND TRY TO SHOW THAT
WE ARE THINKING WITH EMPATHY
ABOUT THEIR POSITION.
THE THIRD THING THAT I GET IS
VERY IMPORTANT WHEN YOU'RE
TALKING ABOUT COMMUNITY LIAISON.
YOU HAVE TO UNDERSTAND THAT YES,
IT'S GOOD FOR ME TO HAVE ALL
THOSE LETTERS BEHIND MY NAME BUT
THE MOST IMPORTANT THING IS THAT
I'M ISABEL'S MOM AND AS SUCH, I
PARTICIPATE IN MORE PEOPLE
TRAINING THAT IS NOT ONLY THAT
YOU UNDERSTAND HOW TO SPEAK, HOW
TO ADDRESS, HOW TO MAKE YOUR
POINTS, BUT ALSO NETWORKING.
AND NETWORKING AND GIVE YOU THE
TOOLS AND THE EMPOWERMENT TO
TALK TO LEGISLATORS AND TO
RESEARCHERS TO MOVE AND
LEARN,USE PLAIN LANGUAGE.
I WOULD LIKE TO POINT THAT DANNY
AND I ARE GRADUATES FROM THE
LEADERSHIP EDUCATION IN MENTAL
DISABILITIES PROGRAM.
AND IT'S PART OF THE MOTHER AND
CHILD HEALTH SYSTEM.
SO WE IDENTIFY AND I HAVE MET
OTHER PEOPLE THERE.
AND EMPOWER ALSO MEANS TO LOOK
TO EDUCATE YOUR LIAISONS.
LOOK FOR MATERIALS THAT ARE
MAYBE WITHOUT DESTROYING THE
CONCEPT.
ALSO, PROVIDE WITH A GOOD
INFORMATION SO THEY FEEL
CONFIDENT WHEN THEY NEED TO
EXPLAIN WHAT THE RESEARCH IS
ABOUT.
SO NOT ONLY THE RESEARCH BUT THE
BACKGROUND AND THE INSTITUTION
ITSELF.
WHAT THIS INSTITUTION IS DOING.
I WOULD SAY I CAME IN CONTACT
WITH DR. HARTLEY LAB 5 YEARS AGO
THROUGH SOMETHING THEY WERE
CALLED THE EXPERTS.
AND MY DAUGHTER WAS 20.
SO I WENT 5 YEARS WITH HER BEING
PART OF THE STUDY.
BUT THE CENTER WAS DOING THIS
AND THEY WERE THE EXPERTS.
I WOULDN'T BE AWARE OF ALL THE
GOOD THINGS THAT ARE HAPPENING
AT WISE MAN CENTER.
THE OTHER THING THAT I WOULD
LIKE TO EXPLAIN IS, DICTATION.
I JUST -- WE ARE DOING A SHIFT
IN THE PARADIGM.
WE ARE TALKING ABOUT PLAIN
LANGUAGE.
SO WHEN WE PRESENT OUR RESEARCH,
THE FLYER WAS NOT APPROPRIATE
FOR FAMILIES TO CONNECT OR FOR
SELF ADVOCATES BECAUSE PEOPLE
WITH DOWN SYNDROME IS VERY
IMPORTANT TO COMMUNICATE.
SO WE NEED TO CHANGE THAT.
WE ALSO -- FAMILIES NEED TO
UNDERSTAND, AND I THINK A LOT OF
RESEARCH TOO, IS MAYBE THE MORE
APPROPRIATE MODEL IS THAT OF
COMMUNITY OF PRACTICES IN WHICH
WE ARE BOUNDED AS BROKERS SO WE
MOVE BETWEEN DEEPER COMMUNITIES
OF PRACTICES AND WE COME WITH
THE COMMON GOAL, COMMON MISSION
AND WE ALL PARTICIPATE IN THE
CREATION OF THE FINAL PRODUCT,
NOT JUST THE COMMERCIAL PRODUCT
BUT IN EDUCATION AND
DISSEMINATION, IMPROVING THE
LIFE OF PEOPLE WITH DISABILITIES
PRODUCT.
SO IT TAKES TIME BUT WHAT I WANT
TO DO, I WANT TO SAY THAT.
AND TO GIVE DICTATION, REMEMBER.
AND I BET A LOT OF YOU HAVE
FAMILIES AND HAVE A LOT OF
COLLEAGUES THAT WE HAVE BEEN
THEY ARE PROFICIENT IN LANGUAGE,
PREFER TO USE THEIR OWN
LANGUAGE.
SO PEOPLE HAVE TIME TRANSLATING,
NOT ONLY THE RESEARCH BUT THE
ENGLISH TOO.
AND JUST BE A CONTINUOUS
PRESENCE.
WOULD HARTLEY'S RESPONSE TO
POINT OF DICTATION.
LAST YEAR WE START GOING TO
CIRCLE SUPPLY, A FAMILY
CONFERENCE IN WISCONSIN.
THIS YEAR WE ARE COMING.
LAST YEAR WE DO IT AS A TEAM,
PACKING FLYERS.
THIS YEAR WE ARE COMING AS
PARTICIPANTS TO TALK WITH THEM
WHAT WE HAVE LEARNED AND WHAT WE
HAVE BEEN DOING IN THE LAST YEAR
TO REMIND US THAT THE LAB DOORS
ARE ALWAYS OPEN.
THAT THIS IS A RESEARCH THAT IS
VERY IMPORTANT FOR THE ABC
COMMUNITY.
-- ABC-DS COMMUNITY BECAUSE
THESE BIOMARKERS MAKE A
DIFFERENCE.
LIFESTYLE IS INCLUDED.
WE NEED LATINOS TO GIVE OUR
VOICE.
WE ARE COMING BACK AND WE WILL
BE BACK NEXT YEAR AND PROBABLY
EVERY YEAR AS LONG AS AS THIS
CONTINUES.
I WANT TO SAY WHAT I HAVE
LEARNED AND MY MENTAL
DEVELOPMENT IN A YEAR WORKING IN
THIS ABC-DS PROJECT AND
OBVIOUSLY TO POINT OUT THAT I
START -- BECAUSE MY DAUGHTER
WANTS TO BE THERE.
MY DAUGHTER NOW CAN HARDLY WAIT
TO GO TO THE WISE MAN CENTER TO
HAVE PICTURES OF HER BRAIN TAK
TAKEN.
THANK YOU.
>> I WORK CLOSELY WITH THE
FAMILIES IN OUR RESEARCH STUDY
BUT I ALSO WORK CLOSELY WITH THE
COMMUNITY PARTNERS LIKE MARIA
AND DANNY.
SO, YOU JUST MET MARIA AND SHE
IS OUR LATINA MOTHER WORKING AT
TO RECRUIT MEMBERS OF THE LATINO
COMMUNITY IN WISCONSIN TO OUR
ABC-DS RESEARCH STUDY.
AND YOU WILL MEET DANNY SHORTLY
AS A SELF ADD SEE CAT MEMBER OF
OUR STUDY -- ADVOCATE.
HE IS ON THE LEFT IN THE
PHOTOGRAPH.
I WAS ASKED TO SHARE A FEW
LESSONS I HAVE LEARNED BEING IN
THE ROLE AS MORE OR LESS THE
LIAISON BETWEEN OUR COMMUNITY
PARTNERS AND OUR ACADEMIC OR
RESEARCH COMMUNITY HERE AT
UW-MADISON.
SO THE FIRST LESSON THAT I
LEARNED WAS HOW TO SET GOOD
BOUNDARIES WHILE STILL REMAINING
FLEXIBLE.
BOUNDARIES LOOK DIFFERENT WITH
OUR COMMUNITY PARTNERS THAN THEY
OFTEN DO WITH MY OTHER
COLLEAGUES AT THE UNIVERSITY OF
THE I TYPICALLY DO NOT HOLD
MEETINGS WITH COLLEAGUES OUTSIDE
OF MY WORK SCHEDULE BUT I PLAC
AN EXCEPTION WITH THE BIWEEKLY
MEETINGS WE HAVE WITH MARIA AND
DANNY AND I ALSO HAVE TO BE
WILLING TO OCCASIONALLY WORK ON
A WEEKEND BECAUSE WE HAVE EVENTS
THAT HAPPEN SUCH AS BUDDY WALKS
AND THINGS LIKE THAT.
IN ADDITION, WITH ALL OF THAT
INFORMATION, WE NEED TO LEARN TO
NOT JUST LET ALL BOUNDARIES GO
BECAUSE OF THESE ROLES.
SO REGARDING COMMUNICATION, EVEN
THOUGH COLLEAGUES AND COMMUNITY
PARTNERS HAVE MY CELL PHONE
NUMBER, I PERSONALLY PREFER THAT
ANYTHING NON EMERGENCY BE
THROUGH E-MAIL RATHER THAN
PERSONAL CELL PHONE AND THIS IS
A PERSONAL BOUNDARY THAT I LIKE
TO SET.
WHILE THIS IS FAIRLY COMMON AND
IT'S ASSUMED AMONG MY RESEARCH
AND ACADEMIC COLLEAGUES, THIS IS
NOT ALWAYS A GIVEN WITH
COMMUNITY PARTNERS HAS REQUIRED
SOME TOUGH CONVERSATIONS IN THE
PAST.
WILLING TONS HAVE THESE
CONVERSATIONS WITH PEERS HAS
ALLOWED US TO COME TO RESOLUTION
THAT IS WORK FOR EVERYONE,
COMMUNITY PARTNERS AND MS.
ADDITIONALLY WE LEARNED HOW TO
SET BOUNDARIES ON WEEKENDS SO
YES, I STILL WORK SOME WEEKENDS,
HOWEVER, WE ARE PUTTING LIMITS
ON THAT ANDERN SURING THAT
EVERYONE IS MAINTAINING
HAPPINESS WHILE STILL DOING WHAT
WE NEED TO DO.
THE SECOND LESSON I LEARNED IN
THIS ROLE IS THE IMPORTANCE OF
LANGUAGE AND KNOWING THE
APPROPRIATE TERMINOLOGY TO USE
IN A VARIETY OF SETTINGS.
SO THE LARGE I USE TO DESCRIBE A
SITUATION TO A RESEARCHER LIKE
DR. HARTLEY IS VERY DIFFERENT
THAN THE LANGUAGE I USE TO
DESCRIBE THE SAME SITUATION TO A
PARENT AND THAT WOULD ALSO BE
DIFFERENT FROM LANGUAGE I WOULD
USE WITH A SELF-ADVOCATE.
LIKEWISE, I'M FREQUENTLY THE
RECIPIENT OF WHAT DR. AGREE SON
DESCRIBED TO ME AS THE WARM
HANDOFF AT EVENTS.
IT'S WHERE MARIA OR DANNY WILL
STRIKE UP A CONVERSATION WITH A
FAMILY AND BUILD THAT
RELATIONSHIP, AND BUILD THAT
COMMUNICATION AND THEN THEY'LL
HAND THEM OFF TO ME ONCE THAT
RELATIONSHIP HAS BEEN BUILT SO I
CAN GO OVER MORE OF THE DETAILS
RASHING THE STUDY.
WITH THAT, I NEED TO BE ABLE TO
READ THE ROOM AND KNOW WHEN TO
USE SCIENTIFIC TERMINOLOGY AND
WHEN TO USE MORE LAY-PERSON
TERMS.
FINALLY, I NEED TO BE ABLE TO
RECOGNIZE THE NEEDS AND
MOTIVATIONS FOR RESEARCHERS AND
COMMUNITY PARTNERS, RECOGNIZE
THAT THOSE ARE DIFFERENT AND BE
ABLE TO ACKNOWLEDGE, RELATE TO
AND WORK TOWARDS SOLUTIONS FROM
BOTH SIDES OF THE TABLE.
RESEARCHERS AND MEMBERS OF THE
ACADEMIC TEAM OFTEN PRIORITIZE
FOLLOWING A GIVEN PROCESS AND
PROCEDURE FOR RESEARCH.
THIS MAKES RESEARCH MORE
RELIABLE AND MAKES IT MORE
STREAMLINED AND OFTEN SIMPLER.
HOWEVER, WITH THAT, THAT CAN
OFTEN EXCLUDE OTHER GROUPS IF WE
GET STUCK IN THAT ROUTINE.
THEREFORE, I NEED TO BE ABLE TO
BRING CONCERNS LIKE WHAT MARIA
EXPRESSED OR WHAT DR. GLEASON
EXPRESSED WITH TRANSPORTATION
DIFFERENCES AND BEING WILLING TO
TRAVEL OTHER PLACES RATHER THAN
HAVING THEM COME TO US WHEN WE
CAN.
BEING WILLING TO TAKE THOSE TWO
RESEARCHERS AND FIGURE OUT HOW
TO IMPLEMENT THAT IN OUR STUDY
TO INVOLVE A WIDER POPULATION OF
PEOPLE?
SO, IN CONCLUSION, WORKING WITH
COMMUNITY PARTNERS DEFINITELY
HAS ITS CHALLENGES.
IT REQUIRES FLEXIBILITY.
IT REQUIRES VARY NATION YOUR
LANGUAGE AND THE TERMINOLOGY
THAT YOU'RE USING AND IT
REQUIRES YOU TO THINK OUTSIDE OF
THE BOX AND ENCOURAGE OTHER
MEMBERS OF YOUR TEAM TO DO SO AS
WELL.
THIS WILL HELP YOU MAXIMIZE
INCLUSION.
BUT WITH THAT SAID, IT IS HIGHLY
REWARDING.
I HAVE LEARNED SO MUCH BY
INCLUDING MARIA AND DANNY IN
CONVERSATIONS ON HOW TO BETTER
INCLUDE PEOPLE FROM DIFFERENT
BACKGROUNDS IN OUR STUDY.
SO, IN CONCLUSION, I WOULD LIKE
TO INTRODUCE DANNY WHO IS A
SELF-ADVOCATE MEMBER OF OUR TEAM
AND SHE GOING TO PRESENT AN
ORIGINAL POEM HE WROTE ABOUT
INCLUSION AND ABC-DS AND
CLINICAL RESEARCH IN GENERAL.
>> DANNY CHAFETZ: I AM DANNY
CHAFETZ.
I HAVE RIGHT HERE IN MY HANDS
TOO.
WHEN YOU HAVE THIS DISEASE, THE
MEMORY STARTS TO FADE AWAY.
[ READING FROM THE SCREEN ]
I WANT TO THANK EVERYONE AT
ABC-DS.
AND THANK YOU SO MUCH.
FOR MY JOURNEY I'M A MAN FINDING
MY WAY AND MAYBE IT'S BETTER FOR
ALL INCLUDED
>> WOW!
THANK YOU FOR THAT ENDING THIS
FANTASTIC SESSION WITH YOUR
POEM.
YOU ARE TRAILBLAZERS AND I'M
GRATEFUL DR. HARTLEY COULD STEP
IN AND ALSO FOR DR. GLEASON AND
DR. ANDA NOG NOG -- WE WILL TAKE
QUESTIONS AT THE END OF THE
SESSION.
SO NOW WE WILL MOVE ON TO THE
NEXT PROGRAM AND WE ARE GOING TO
HEAR FROM THE NATIONAL CENTER
FOR ADVANCING TRANSLATIONAL
SCIENCES NCATS FUNDED CLINICAL
AND TRANSLATIONAL SCIENCES AWARD
PROGRAM AND RECRUITMENT
INNOVATION CENTER IS ONE OF THE
KEY ORGANIZATIONAL PARTNERS IN
THIS INITIATIVE.
THERE WILL BE THREE SPEAKERS IN
THIS SEGMENT.
TIFFANY ISRAEL IS THE CORE
DEVELOPER OF THE COMMUNITY
ENGAGEMENT STUDIO FOR THE
RECRUITMENT INNOVATION CENTER.
JASMINE BELL IS ALSO A RESEARCH
CONSULTANT FOR THE RECRUITMENT
INNOVATION CENTER AND SHE
PROVIDES PRAGMATIC SUPPORT FOR
CLINICAL TRIALS THROUGH
COMMUNITY PARTNERSHIPS AND
DEVELOPING APPROPRIATE
RECRUITMENT MATERIALS AND
EDUCATING THE STUDY TEAMS.
DEVAN RAY IS A MANAGER OF THE
COMMUNITY ENGAGEMENT STUDIO OF
RI R AND AS WELL AS PROVIDES
SUPPORT ON THE NEWLY-FORMED
HEALTH EQUITY ACTION RESEARCH
TEAM CALLED HART.
SO THANK YOU TO ALL OF THE
SPEAKERS.
>> TIFFANY ISRAEL: THANK YOU FOR
HAVING US.
IT'S THE AFTERNOON AND I'M SURE
EVERYONE IS TIRED.
I HOPE YOU HAD A GOOD BREAK AND
A CHANCE TO STRETCH.
WE HAVE A BRIEF AMOUNT OF TIME
WITH YOU.
WE ARE EXCITED TO BELIEVE
PRESENTING TODAY.
I'M HERE WITH JASMINE AND DEVAN.
WE REPRESENT A WIDE RANGE OF
WORKING IN RESEARCH INCLUDING
DIVERSITY, EQUITY AND INCLUSION,
COMMUNITY ENGAGEMENT, SPECIAL
EDUCATION, SOCIAL WORK AND
COMMUNITY ORGANIZING.
>> PLEASE PACE YOURSELF, A
REMINDER FROM THE INTERPRETER
CAME IN.
THANK YOU.
>> THERE ARE MY LOVELY
COLLEAGUES WHO I JUST
REFERENCED.
WE'LL GO AHEAD AND JOURNAL OUR
NEXT SLIDE.
VERY QUICKLY TODAY, OUR GOAL AND
OUR BRIEF TIME TOGETHER IS TO
SHARE A FEW ACTIONABLE ITEMS
THAT AND YOUR TEAM CAN USE GOING
FORWARD TO ENHANCE THE DIVERSITY
OF YOUR STUDIES AS WELL AS TO
SHARE A HOST OF OTHER RESOURCES
THAT YOU WILL BE ABLE TO UTILIZE
POST-WORKSHOP.
THIS IS JUST A QUICK AGENDA
SETTING FOR US.
WE ARE GOING TO GIVE YOU A QUICK
INTRODUCTION TO THE RECRUITMENT
INNOVATION CENTER.
WE ARE GOING TO SET SOME CONTEXT
FOR OUR PRESENTATION AND THEN
WE'RE GOING TO HONE IN WITH SOME
RECOMMENDATIONS AROUND THE FOUR
KEY AREAS THAT YOU SEE,
INCLUDING THE RESEARCH
ENVIRONMENT, DESIGNING A STUDY,
COMMUNITY ENGAGEMENT AND THEN
LASTLY BUT CERTAINLY
IMPORTANTLY, IS RECRUITMENT AND
RETENTION.
SO WITH THAT, I WILL HAND THIS
OVER TO MY COLLEAGUE, JASMINE.
>> THANK YOU, TIFFANY.
YOU CAN GO TO THE NEXT SLIDE.
PERFECT.
SO, A BIT OF STAGE SETTING.
WE WORK WITHIN THE RECRUITMENT
INOYIVATION CENTER WITHIN THE
CENTER FOR CLINICAL AND
TRANSLATIONAL RESEARCH AT
VANDERBILT, A SPACE WHERE WE
OFFER STUDY TEAMS,
EVIDENCE-BASED STRATEGIES, TO
ADDRESS DIFFERENT RECRUITMENT
CHALLENGES AND GOALS.
NEXT SLIDE.
AND WE'RE ABLE TO REALLY PROVIDE
SUPPORT TO THESE STUDY TEAMS BY
WORKING ACROSS THE ENTIRE
RESEARCH CONTINUUM.
SO ALL THE WAY FROM AWARENESS
RAISING DOWN TO DISSEMINATING
STUDY RESULTS.
NEXT SLIDE.
SO I WANT TO OPEN UP WITH THIS
QUESTION.
THE QUESTION THAT I'M SEEING ON
LINE IS, WHY DOES IT SEEM LIKE
THERE ARE NO BLACK AND BROWN
PEOPLE WITH DOWN SYNDROME?
THAT'S THE QUESTION THAT PEOPLE
ARE ASKING ON LINE.
AND SO, TO SET THE STAGE A BIT,
AS WE ARE TALKING ABOUT DOWN
SYNDROME RESEARCH, REALLY
THROUGH THE VEIL OF DIVERSITY,
IT IS REALLY IMPORTANT FOR US TO
ACKNOWLEDGE THE SOCIAL IN
VISIBILITY OF BEING BIPO R AND
LIVING WITH DOWN SYNDROME.
WHAT I WANT US ASKING IS, IF THE
PUBLIC IS SOCIALIZED TO BELIEVE
THAT A CERTAIN GROUP DOESN'T
EXIST, THEN WHAT ARE THE LIVED
AND MATERIAL IMPACTS OF THAT
DEHUMANIZING AND OSTRACIZING
LANGUAGE?
AND HOW CAN THIS BETTER INFORM A
LOT OF THE DISCRIMINATION AND
DIFFERENT HEALTH DISPARITIES
THAT WE'RE SEEING IN THIS
COMMUNITY AND ITS IMPACTS ON
CLINICAL RESEARCH?
NEXT SLIDE.
SO I KNOW THIS AUDIENCE KNOWS A
LOT OF THE INFORMATION BUT WE
KNOW THAT BIPOC INDIVIDUALS
LIVING WITH DOWN SYNDROME FACE
HIGHER STIGMA.
THEY ARE OFTEN PERCEIVED AS
AGGRESSIVE, VILE AND HE WANT
MISBEHAVE IN THE EXPERIENCE
HIGHER RATES OF BIAS AS WELL AS
DISCRIMINATION.
AND WE THINK ABOUT THE RACIAL
DISPARITIES AND HOW THAT IMPACTS
LIFE EXPECTANCY THAT DIFFERENCE
REALLY COULDN'T BE STARKER.
NEXT SLIDE.
I'M GOING TO TURN THINGS OVER TO
DEVAN WHO WILL EXPLORE THIS IN
MORE DETAIL.
>> THANK YOU.
IN THE WORK WE DO, WE HAVE THE
PRIVILEGE TO ENGAGE COMMUNITY
MEMBERS AND HEAR FROM THEM THE
DIFFERENT BARRIERS AND
CHALLENGES THAT THEY SEE WHEN IT
COMES TO PARTICIPATING IN
RESEARCH.
SO ON THE LEFT YOU SEE THAT IS
THERE A CONDENSED LIST OF COMMON
BARRIERS TO PARTICIPATION IN
DOWN SYNDROME RESEARCH.
BUT ON THE RIGHT, WE HAVE DIRECT
QUOTE AND FEEDBACK FROM PARENTS
OF CHILDREN WHO HAVE BEEN
DIAGNOSED WITH DEVELOPMENTAL
DISABILITY OR WITH A GENETIC
DISORDER.
IT'S INTERESTING TO SEE THAT
THEY ARE VERY SPECIFIC FEEDBACK
CORRELATES VERY WELL WITH THE
BARRIERS THAT WE SEE.
SO FOR EXAMPLE, THE VERY FIRST
ONE.
[ READING ]
THAT VERY NICELY GOES WITH THE
CHALLENGE OF LONG TERM
IMPLICATIONS AND SAFETY OF THEIR
CHILD.
THE SECOND ONE.
[ READING ]
VERY MUCH GOES IN LINE WITH WHAT
LIMITED INFORMATION EXISTS ABOUT
CLINICAL TRIALS AND ACCESS TO
CLINICAL TRIALS.
THIRD:
[ READING ]
VERY MUCH UP IN LINE WITH THE
LOGISTICAL CHALLENGES THAT
PARTICIPANTS OFTEN FACE.
AND LASTLY:
[ READING ]
VERY MUCH GOING IN LINE WITH THE
MISTRUST AND IMPLICIT BIAS THAT
OUR PARTICIPANTS, COMMUNITY
MEMBERS, SEE AND ARE
EXPERIENCING.
SO BEING MINDFUL.
THESE FOUR ARE JUST A VERY SMALL
SNAPSHOT OF VERY SPECIFIC
FEEDBACK WE RECEIVED DIRECTLY
FROM INDIVIDUALS ON THEIR
PERSPECTIVES OF RECRUITMENT AND
RETENTION AT DIFFERENT TRIALS.
NEXT SLIDE.
>> JUST TO REMIND YOU FROM THE
INTERPRETERS TO GO A LITTLE BIT
SLOWER.
WE ARE TRYING TO CATCH-UP.
THANK YOU VERY MUCH.
>> ABSOLUTELY.
THANK YOU VERY MUCH.
MY APOLOGIES.
>> NO WORRIES.
>> SO RECOMMENDATIONS TO
DIVERSITY.
SO A QUESTION S ARE WE UNPACKING
OUR BIASES FROM AN ACADEMIC
PERSPECTIVE?
RESEARCH PERSPECTIVE?
ARE WE AWARE OF HOW SYSTEMIC
RACISM IMPACTS HEALTH
INTECHITIES AND ARE WE WORKING
TO DEVELOP PROJECTS IN
ENVIRONMENTS THAT ARE PERSON
CENTERED AND FOSTER TRUST.
SO, ONE RESOURCE THAT WE HAVE IS
THE FASTER TOGETHER, ENHANCING
THE RECRUITMENT OF MINORITIES IN
CLINICAL TRIALS, WHICH WE WILL
BE UPDATING TO BE MORE AWARE OF
LANGUAGE CHANGES IN EVOLUTION.
BUT IN THIS TRAINING THAT IS
PROVIDED FOR CLINICAL
RESEARCHERS AND PROJECT TEAMS,
THERE ARE 8 MODIUMS.
AND THERE ARE 8 MODULES AND A
LITTLE BIT OF BACKGROUND ABOUT
THEM.
THE FIRST IS PILOTING THE
IMPORTANCE OF INTENTIONAL
INCLUSION OF RACIAL AND ETHNIC
DIVERSITY IN TRIALS AND HOW LOW
PARTICIPATION OF MINORITIES IN
RESEARCH EFFECTS HEALTH CARE.
THE SECOND IS ABOUT REFLECTING
ON OUR BIASES AND INTENTION
ALLEN GAUGEMENT WITHIN THE
COMMUNITY AND BUILDING
PARTNERSHIPS.
3 AND 4 HOW TO AWARE DIFFERENT
LEARNING STYLES AND CULTURAL
NUANCES TO IMPROVE EDUCATION.
THE 5 IS VERY SIMILAR TO THE
SECOND MODULE, BUILDING
PARTNERSHIPS SPECIFICALLY WITH
COMMUNITY HEALTH CARE PROVIDERS
TO ADDRESS THE WARRANTED
MISTRUST AND BEGIN TO BUILD
THOSE RELATIONSHIPS WITH
COMMUNITY MEMBERS.
AND AS WE KNOW, INFORMED CONSENT
IS INCREDIBLY IMPORTANT.
AND SO MODULE 6 FOCUSING ON WAYS
TO FACILITATE THAT EDUCATIONAL
PIECE BEFORE CONSENTING AND 7
SHARES BEST PRACTICES TO ENSURE
THAT THE PROCESS IS ACCESSIBLE
AND APPROPRIATE AND THAT COULD
BE ANYTHING FROM LANGUAGE,
LITERACY LEVEL, ACCESS,
ET CETERA.
AND THEN THE FINAL MODULE IS
VERY SPECIFIC TO ADDRESSING
RETENTION CHALLENGES AND
DIFFERENT APPROACHES AND BEST
PRACTICES TO ADDRESS THOSE
CHALLENGES.
NEXT SLIDE.
SO, THINKING THROUGH THE
RESEARCH ENVIRONMENT AND ONE
THING TO ASK OURSELVES IS, IS IT
WELCOMING?
BECAUSE IMPROVING DIVERSITY IN
RESEARCH ISN'T JUST THE
DIVERSITY OF THE PATIENT AND THE
TRIAL PARTICIPANTS.
ONE WAY TO IMPROVE DIVERSITY IN
RESEARCH IN CLINICAL TRIALS IS
TO ENSURE THAT WE ARE INTENTION
ALLEY ADDRESSING DIVERSITY AND
INCLUSION INTERNALLY AND IF WE
ARE HOLDING OURSELVES
ACCOUNTABLE.
SO, HOW DIVERSE IS YOUR TEAM?
WHAT STRATEGIES ADDRESS
INCLUSION AND DIVERSITY OF
FACULTY AND STAFF AND EVEN
SUPPORT STAFF HAVE BEEN
IMPLEMENTED?
ARE THERE PLANS TO ADDRESS THESE
INEQUITIES?
ADDITIONALLY, ARE THERE PEOPLE
ON STAFF OR EVEN THE BOARD WHO
LOOK LIKE THE PEOPLE YOU'RE
WANTING TO ENGAGE AND RECRUIT?
ARE THERE PEOPLE WHO HAVE
SIMILAR LIVED EXPERIENCES?
SPEAK THE SAME LANGUAGE?
EVEN THE SAME DIALECT?
OR EVEN LIVE IN THE SAME AREAS
AS THE COMMUNITIES YOU'RE HOPING
TO ENGAGE?
AND SO, WHEN EXPANDING ONE'S
TEAM, THINKING THROUGH
REQUIREMENTS AND GOING THROUGH
THE HIRING PROCESS, WOULD ANY OF
THE REQUIREMENTS YOU'RE LOOKING
OR EXPECTING, DOES THAT LIMIT
THE POOL OR IS IT IN ANY WAY
EXCLUSIONARY?
ARE THERE HIRING COMMITTEES
DIVERSE?
INTEGRATING DIVERSITY EQUITY AND
INCLUSION SPECIALISTS?
OR HR IN A DIVERSE WAY?
SO AGAIN, PRIORITIZING AND
HIRING CULTURALLY STAFF AND
BEING MINDFUL OF THESE HIRING
PRACTICES IS A STEP TO SHOW MY
NOR TIDES COMMUNITIES THEY ARE
SEEN AND NOT JUST A NUMBER.
NEXT SLIDE.
THIS IS SIMILAR TO WHAT OTHERS
HAVE STATED.
STUDY DESIGN AND REDUCING THE
BURDEN ON OUR PARTICIPANTS.
SO MANY OF US IN RESEARCH AND
ACADEMIA HAVE THE PRIVILEGE AND
ARE PRIVILEGED TO WORK A 9-5 OR
8-4 MONDAY-FRIDAYS BUT THAT'S
NOT EVERYONE'S REALITY.
ARE WE EXPANDING OUR
AVAILABILITY?
INTENTIONY ENSURING THERE ARE
WEEKEND AVAILABILITY, EVEN
AVAILABILITY?
ANOTHER WAY TO REDUCE BURDEN AND
BARRIERS IS TO OFFER OR UTILIZE
A TELEHEALTH OPTION BECAUSE
PEOPLE CAN'T ALWAYS COME INTO AN
OFFICE OR THEY HAVE OTHER
OBLIGATIONS AND PRIORITIES.
IF TELEHEALTH ISN'T AN OPTION,
HOW ARE WE ENSURING PARTICIPANTS
CAN MAKE IT INTO A CLINIC OR TO
YOUR SPACE?
ARE THERE BUS VOUCHERS?
PARKING VOUCHERS?
GAS CARDS?
ONE WAY TO ADDRESS ALL OF THESE
IS HAVING LOCATIONS RIGHT IN THE
HEART OF THE COMMUNITIES THAT
YOU'RE WISHING TO CONNECT WITH.
SO IN THIS SPACE, SLP CLINICS,
OT CLINICS, COLLABORATING WITH
COMMUNITY PROGRAMS AND
ORGANIZATIONS, A TRUSTED SPACE
FOR FAMILIES.
AND THEN ANOTHER CONSIDERATIONS
TO REDUCE BARRIERS IS SENSORY
CONSIDERATIONS.
HOW BRIGHT AND DARK ARE YOUR
ROOMS?
ANYTHING WITH A STRONG FRAGRANCE
THAT COULD BE OVER BEARING?
DO YOU HAVE WEIGHTED BLANK NETS
ARE THERE SNACKS AVAILABLE NOT
JUST FOR PARTICIPANTS BUT FOR
THEIR FAMILIES AND OTHER FOLKS
THAT ARE THERE TO HELP THE
RESEARCH PROCESS AND HELP TO
ENSURE THAT THEIR FAMILIES
MEMBERS AND LOVED ONES HAVE ALL
THEY NEED?
NEXT SLIDE.
>> THANK YOU, DEVON.
VERY QUICKLY I'M GOING TO TOUCH
UPON A MODEL WE CREATED 12 YEARS
AGO CALLED COMMUNITY ENGAGEMENT
STUDIOS.
IT'S POSSIBLE THAT SEVERAL FOLKS
ON THE CALL TODAY ARE FAMILIAR
WITH THIS MODEL.
COMMUNITY ENGAGEMENT STUDIOS ARE
A ONE-TIME CONSTITUTIVE MEETING
WITH A RESEARCH TEAM'S
POPULATION OF INTEREST.
SO THIS IS A MEETING THAT TAKES
MAKES BETWEEN THE RESEARCH TEAM
AND A COMMUNITY.
IT'S NOT MEANT TO REPLACE THE
MANY OTHER IMPORTANT ENGAGEMENT
STRATEGIES THAT HAVE BEEN
MENTIONED TODAY.
IT'S MEANT TO SIMPLY BE A
SUPPLEMENT OR EVEN A TOOL FOR
STARTING A TEAM'S ENGAGEMENT
PROCESS.
I LOVE THAT DANNY MENTIONED THE
IMPORTANCE OF LISTENING TO
STORIES BECAUSE THAT IS EXACTLY
THE SPACE THAT COMMUNITY
ENGAGEMENT STUDIOS ARE TRYING TO
CREATE FOR FAMILIES AND
ADVOCATES AND STUDY
PARTICIPANTS.
NEXT SLIDE, PLEASE.
SO WHAT I DID IS PUT TOGETHER A
SLIDE THAT REPRESENTS AN
AGGREGATE OF COMMUNITY
ENGAGEMENT STUDIOS CONDUCTED
WITH FAMILIES AND CAREGIVERS.
THE FOCUS INCLUDED MULTIPLE
AREAS AS YOU CAN SEE,
IMPLEMENTATION, BARRIERS,
MESSAGING, MATERIALS, YOU
CANNULATE LIES THIS MODEL TO
HAVE CONVERSATIONS AROUND A WIDE
RANGE OF ISSUES THAT MIGHT
IMPACT A STUDY.
SO THE FIRST TWO KEY
RECOMMENDATIONS HONED IN ON
TAKING INTO CONSIDERATION THE
MANY CHALLENGES THAT EXIST OF
PARTICIPATING IN A STUDY.
AND IT ENCOURAGES RESEARCHERS TO
CREATE AN ENVIRONMENT THAT MAKES
PARTICIPATION AS CONVENIENT AND
AS EASY AS POSSIBLE.
SO TALKING ABOUT HAVING 1-2
EVENING A WEEK.
HAVING A WEEKEND AVAILABLE.
BUT ALSO BEING MINDFUL THAT
REALLY LENGTHY VISITS CAN BE
DIFFICULT FOR BOTH THE FAMILIES
AS WELL AS THE STUDY
PARTICIPANTS.
WHAT CAN YOU BREAK INTO TWO
PIECES?
CAN A SEGMENT OF THE STUDY BE
IMPLEMENTED ON LINE?
CAN IT BE IMPLEMENTED IN A
DIFFERENT SPACE THAT MAYBE ISN'T
THAT CLINICAL SPACE BUT WHERE
THE FAMILY AND PARTICIPANT MIGHT
ALREADY BE?
AND THEN THE SECOND STEP
HIGHLIGHTS THE NEED FOR RESEARCH
TEAMS TO DEVELOP REALLY STRONG
RELATIONSHIPS WITH COMMUNITY.
I LOVE THAT ACROSS ALL THE
PRESENTATIONS WE ARE PICKING
OCCUPY THIS THEME TODAY AND THIS
HERE IS SHOWING US THAT OUR
FAMILIES AND OUR COMMUNITIES ARE
SAYING, YES, ALL THESE THINGS
YOU'RE HEARING FROM YOUR
COLLEAGUES ARE REALLY IMPORTANT
TO US.
SO THE IDEA HERE IS THAT BUILD
THE STRONG RELATIONSHIPS.
THAT INCLUDES GRASSROOTS,
COMMUNITY-BASED ORGANIZATIONS,
CAREGIVERS AND INDIVIDUALS WHO
ARE ADVOCATES AND LEADERSES IN
THIS SPACE.
ALSO IMPORTANT TO INCLUDE
TRUSTED COMMUNITY-BASED
PROVIDERS.
SO OTHER POTENTIAL PARTNERS THAT
ARE OFTEN OVERLOOKED ARE OTs
AND PTs, SOCIAL WORKERS,
SPECIAL EDUCATION PROFESSIONALS,
QUITE OFTEN WHEN WE GO OUT AND
WORK WITH THESE GROUPS OF
INDIVIDUALS TO PULL THEM IN TO
COMMUNITY ENGAGEMENT STUDIOS,
THEY OFTEN SAY THEY ARE NEVER
REALLY ASKED TO PARTICIPATE AS
COLLABORATING PARTNERS OR TO
PARTICIPATE IN HELPING TO DO
OUTREACH, MEANINGFUL OUTREACH SO
THE FOLKS THAT THEY ARE
PROVIDING SERVICES TO ARE AWARE
THAT STUDIES EXIST AND HOW THEY
CAN BE INCLUDED IN THEM.
ALL OF THESE PARTNERSHIPS CAN
HELP TO INCREASE THE RESEARCH
TEAM'S SOCIAL CONNECTIVITY AND
ALL OF THEM CAN INCREASE THE
ABILITY TO REACH A MORE DIVERSE
AUDIENCE.
THE LAST RECOMMENDATION IS ONE
THAT WE HEAR FROM A LARGE
MAJORITY OF OUR COMMUNITY
EXPERTS ACROSS ALL DEMOGRAPHICS
AND IT'S THAT IT IS TIME TO STEP
INTO 2022 AND EMBRACE
TECHNOLOGY.
THAT DOES NOT NECESSARILY MEAN
THAT YOUR TEAM HAS TO GO OUT NOW
AND BUILD A REALLY STRONG SOCIAL
MEDIA PRESENCE.
YOU CAN COLLABORATE WITH THE
GROUPS THAT HAVE ALREADY
MENTIONED ABOVE TO PUSH OUT
INFORMATION, TO PUSH OUT
EDUCATION, TO PROVIDE
OPPORTUNITIES SO IF A GROUP THAT
YOU ARE COLLABORATING WITH HAS A
STRONG SOCIAL MEDIA PRESENCE AND
YOU CAN SPARE 30 MINUTES OF YOUR
DAY TO PROVIDE AN ONLINE FORUM
TO MAYBE DISCUSS IN LAY TERMS
NEW RESEARCH FINDINGS, NEW BEST
PRACTICES.
SOME DOS AND DON'T IN A CERTAIN
SPACE FOR A CERTAIN GROUP.
THESE ARE THINGS THAT ARE REALLY
WHAT I REFER TO AS LOW-HANGING
FRUIT FOR YOUR ABILITY TO GIVE
BACK TO A COMMUNITY THAT YOU ARE
TRYING TO CREATE A STRONG
RELATIONSHIP THAT ACTIVITIES IN
RELATIONSHIPS THAT WE TALK ABOUT
QUITE OFTEN.
NEXT SLIDE, PLEASE.
SO I WANT TO TALK JUST A LITTLE
BIT ABOUT COMMUNITY ENGAGEMENT
BEST PRACTICES AND HOW THIS IS
ALL SORT OF CONNECTED.
SO I TALK A LITTLE BIT HERE
ABOUT MUTALITY AND THAT IS THE
IDEA THAT WE ARE PRIORITIZING
THAT THERE ARE BENEFITS FOR ALL
PARTIES WHO ARE PARTICIPATING.
NOT JUST THE RESEARCH TEAM, NOT
JUST ACADEMIC INSTITUTION, BUT
THERE ARE PRIORITIES SET WITHIN
STUDIES THAT BENEFIT EVERYONE.
WE HEARD A SPEAKER EARLIER THAT
COMMENT WHEN THEY CREATED THEIR
MATERIALS, SOME OF THE FOLKS IN
THE COMMUNITY SAID YOU REALLY
SHOULD BE HIGHLIGHTING WHY THIS
IS MEANINGFUL.
WHY WE SHOULD PARTICIPATE.
HOW THIS BENEFITS THE COMMUNITY.
AND WE HEAR THAT ALL THE TIME.
SO WHAT ARE THE -- THERE IS SAY
WONDERFUL GRID CALLED THE GIVE
GET GRID.
WHAT ARE THE BENEFITS THAT BOTH
PARTIES HAVE TO THIS PARTICULAR
STUDY?
AND JUST BE MINDFUL OF BUILDING
IN BENEFITS TO PARTICIPATING FOR
PARTICIPANTS FOR THEIR FAMILIES
AND FOR COMMUNITY ORGANIZATIONS.
I HAVE TALKED A LITTLE BIT ABOUT
ALREADY ABOUT PARTNERS BUT I
ENCOURAGE FOLKS TO BE REALLY
CREATIVE ABOUT WHO YOUR PARTNERS
CAN BE AND WHAT THOSE
PARTNERSHIPS LOOK LIKE.
EVERY COMMUNITY HAS FAMILIES AND
ADVOCATES WHO ARE REALLY VOCAL
AND ACTIVE IN THEIR OWN SPACE
WHETHER THAT IS BASED ON THEIR
OWN HEALTH CARE JOURNEY, THEIR
INTERESTS IN POLICY, THEIR
INTEREST IN RESEARCH.
I THINK IT'S REALLY IMPORTANT
THAT WE EMBRACE INDIVIDUALS IN
THAT SPACE AND ALSO CREATE
OPPORTUNITIES FOR PEOPLE TO GROW
INTO THAT SPACE.
SO, IT'S NOT ENOUGH TO SAY THAT
WE ARE VALUING DIVERSITY AND
INCLUSIVITY IF WE ARE NOT
CREATING SPACE THAT IS ARE
WELCOMING FOR INDIVIDUALS.
SO WE CAN HIRE AND WE CAN BRING
INTO STUDIES HAVINGS FROM
COMMUNITIES OF COLOR BUT IF WE
DON'T CREATE REALLY SAFE OPEN
SPACES, WHERE FOLKS FEEL
COMFORTABLE, THEN WE WILL HAVE A
CHALLENGE WITH RETENTION AND
ALSO BUILDING THOSE MEANINGFUL
RELATIONSHIPS AND
COLLABORATIONS.
NEXT IS, EQUITY.
EQUITY IS KEY.
SO WHEN WE'RE CREATING
COLLABORATIONS, WHEN WE ARE
CREATING PARTNERSHIPS, I TALK
ABOUT DATING.
WE NEED TO MAKE SURE OUR POWER
DYNAMICS HAVE EQUITY.
WE NEED TO MAKE SURE THAT
DECISION-MAKING IS SHARED AND WE
NEED TO MAKE SURE THAT EVERYONE
CAN MEANINGFULLY CONTRIBUTE TO
THE COLLABORATION.
SO THEY ARE NOT JUST THERE TO
RUBBER STAMP.
NOT THERE TO CHECK A BOX.
FOLKS NEED TO BE ENGAGED IN A
REALLY MEANINGFUL WAY AND WE
NEED TO ASK FOLKS WHAT THAT
LOOKS LIKE FOR THEM.
WHAT WOULD BE A MEANINGFUL
CONTRIBUTION, A MEANINGFUL
OUTCOME FOR THEM?
AND THE LAST PIECE IS
COMPENSATION.
I AM ALWAYS SURPRISED QUITE
OFTEN WHEN I WORK WITH
RESEARCHERS WHO ARE NOT
COMPENSATING THEIR ADVISORY
BOARDS OR ADVISERS.
WE NEED TO COMPENSATE FOR TIME.
WE NEED TO COMPENSATE FOR ADVICE
AND WE NEED TO COMPENSATE FOR
GUIDANCE.
WHETHER THIS IS REVIEWING
MATERIALS THAT WILL BE USED IN
THE COMMUNITY OR THINKING ABOUT
HOW TO IMPROVE IMPLEMENTATION
FROM PERHAPS A CAREGIVER OR
PARTICIPANT PERSPECTIVE.
WE ARE ALL COMPENSATED FOR OUR
TIME AND I FEEL IT'S REALLY,
REALLY IMPORTANT THAT WE
COMPENSATE EQUITABLY FOR OTHER'S
TIME AND IF WE ARE SAYING THAT
OUR GOAL IS TO INCREASE THE
DIVERSITY OF INDIVIDUALS ENGAGED
IN RESEARCH, COMPENSATION
BECOMES EVEN MORE IMPORTANT FOR
MANY OF OUR FAMILIES WHO MAY
HAVE TO PAY FOR TRANSPORTATION
OR CHILD CARE OR TAKE OFF FROM
WORK TO BE ABLE TO PARTICIPATE
MEANINGFULLY IN THE WORK WE ARE
DOING.
NEXT SLIDE, PLEASE.
I THINK I'M GOING TO HAND THIS
OVER TO MY COLLEAGUE.
>> PERFECT.
THANK YOU, TIFFANY.
SO I WANTED TO TAKE SOME TIME TO
REALLY TALK ABOUT DESIGNING AND
DEVELOPING AND MESSAGING
RECRUITMENT MATERIALS.
SO YOU CAN SORT OF BE CREATING
MATERIALS THAT ARE TAILORED AND
ACCESSIBLE IN A LOT OF DIFFERENT
WAYS.
FIRST YOU REALLY WANT TO MAKE
SURE YOU PROVIDE STUDY MATERIALS
THAT ARE SUPPLEMENTAL TO THE
CONSENT FORM BECAUSE WE KNOW THE
CONSENT FORM IS NOT ENOUGH.
IT'S USUALLY REALLY LONG AND
HARD TO UNDERSTAND SO YOU WANT
TO BE DEVELOPING MATERIALS THAT
ARE EASY TO UNDERSTAND THAT
PROVIDE INFORMATION ABOUT THE
STUDY IN A WAY THAT IS
DIGESTIBLE.
AND THESE MATERIALS SHALL
HIGHLIGHT WHAT THE STUDY IS
ABOUT, WHY IT'S IMPORTANT, WHAT
PATIENTS WILL BE ASKED TO DO THE
EXPECTATIONS AROUND
PARTICIPATION, THE POTENTIAL
SIDE EFFECTS OR RISKS BUT ALSO
YOU SHOULD BE HIGHLIGHTING THE
POTENTIAL FOR BENEFIT AS WELL.
AND YOU CAN DO THIS THROUGH
DIAGRAMS, GRAPHICS, VIDEOS, EVEN
STUDY WEBSITES.
THESE ARE JUST A FEW EXAMPLES.
YOUR MATERIALS SHOULD BE EASY TO
UNDERSTAND FOR ALL LITERACY
LEVELS.
WE OFTEN RECOMMEND THAT YOU
SHOULD AIM FOR NO HIGHER THAN A
6-8 METHOD GRADE READING LEVEL
ON ANY PATIENT-FACING MATERIALS.
YOU ALSO WANT TO MAKE SURE
YOU'RE USING LANGUAGE THAT IS
TRANSPARENT, THAT IS CLEAR AND
THAT IS ROOTED IN TRUST
BUILDING.
AND THEN YOUR MATERIALS SHOULD
BE INCLUSIVE OF VISUAL AND
AUDITORY AND SENSORY NEEDS.
SO YOU WANT TO MAKE SURE THAT
THE COLOR CONTRAST, THE
GRAPHICS, THE SOUNDS, THE I'M
SORRIAGES, THAT THEY ARE NOT
OVERSTIMULATING.
AND THEN LASTLY, MAKING SURE
THAT MATERIALS ARE AVAILABLE IN
MULTIPLE LANGUAGES AND THEY
SHOULD BE REFLECTIVE OF THE
LANGUAGES THAT ARE USED AT YOUR
CLINICAL SITE AND THEN YOU WANT
TO MAKE SURE YOU'RE USING
RACIALLY-CONCORDANT IMAGES ON
THOSE MATERIALS.
NEXT SLIDE.
THESE ARE JUST A FEW EXAMPLES OF
MATERIALS THAT WE HAVE DEVELOPED
FOR OTHER TRIALS.
I WANT TO NOTE THAT YOU DON'T
NEED A LOT OF MONEY TO DEVELOP
THESE SORTS OF MATERIALS.
THERE ARE A LOT OF GREAT
PLATFORMS LIKE CAN VAFOR
DESIGNING MATERIALS.
MICROSOFT WORD ALLOWS YOU TO
CHECK LITERACY LEVELS.
THERE ARE PLENTY OF FREE
WEBSITES TO DOWNLOAD HIGH
RESOLUTION IMAGES.
NEXT SLIDE.
ONE RESOURCE I WANT TO HIGHLIGHT
IS RECRUITMENT AND RETENTION
MATERIALS TOOLKIT DEVELOPED FOR
RESEARCH TEAMS FOR CREATING
MATERIALS USED IN THEIR STUDIES.
IT'S A GREAT RYE SOURCE AND
CONTAINS IN A LOT MORE DETAIL, A
LOT OF GUIDELINES AND
RECOMMENDATIONS AND IT ALSO
LINKS TO TEMPLATES THAT YOU CAN
USE TO CREATE YOUR OWN
RECRUITMENT MATERIALS.
THIS IS HIGHLIGHTED IN THIS
SLIDE BUT YOU CAN ALSO FIND IT
AVAILABLE ON THE TRIAL
INNOVATION NETWORK'S WEBSITE.
NEXT SLIDE.
AND THIS IS JUST A LIST OF
ADDITIONAL RESOURCES THAT YOU
MAY FIND HELPFUL AND EVERYTHING
IS HYPERLINKED IF YOU WANT TO
LEARN MORE ABOUT THE THINGS WE
DISCUSSED TODAY.
AND I THINK IF YOU GO TO OUR
NEXT SLIDE, THAT IS OUR LAST
ONE.
SO I WILL TURN THINGS BACK TO
YOU.
THANK YOU.
>> SUJATA BARDHAM THANK YOU VERY
MUCH, TIFFANY, JASMINE AND
DEVON.
LET'S MOVE ON TO THE LAST
SPEAKER JANICE NODVIN, EXECUTIVE
DIRECTOR AT THE ADULT DISABILITY
MEDICAL HOME HEALTH CARE, A
NONPROFIT PROVIDING HEALTH CARE
POSSIBILITIES TO TEENS AND
ADULTS WITH THE DEVELOPMENTAL
DISABILITIES.
WELCOME, JANICE.
>> JANICE NODVIN: HI, THERE.
IT IS SO INTERESTING TO HEAR AS
MANY RESEARCH OPPORTUNITIES AND
FORMATS.
AND I'M VERY HUMBLED TO BE THE
LAST SPEAKER OF THIS PARTICULAR
SESSION.
BUT I THINK IN TERMS OF WHERE WE
ARE, WE SHOULD BE THE FIRST
BECAUSE THE FIRST HAS TO DO WITH
HEALTH CARE.
CAN YOU PLEASE CHANGE THE SLIDE?
SO I REPRESENT THE ADULT
DISABILITY MEDICAL HEALTH CARE.
WE ARE A PRIMARY HEALTH CARE
FACILITY THAT PROVIDES
POSSIBILITIES TO TEENS AND
ADULTS WITH DEVELOPMENTAL
DISABILITIES.
AND IN MY TIME TOGETHER WITH
YOU, I'D LIKE TO TELL YOU A
LITTLE BIT ABOUT WHAT WE OFFER
TO INDIVIDUALS AND FAMILIES WITH
DOWN SYNDROME AND OTHER
DEVELOPMENTAL DISABILITIES.
AND THEN, HOW WE ARE ABLE TO
HELP ENGAGE INDIVIDUALS TO
PARTICIPATE IN DOWN SYNDROME
RESEARCH AND WHAT WE CAN
ENCOURAGE THEM AND THE BARRIERS
THAT THEY ANTICIPATE.
NEXT SLIDE, PLEASE.
SO WHAT DOES ADMH OFFER?
WE KNOW THAT INDIVIDUALS THAT
ARE LIVING WITH DEVELOPMENTAL
DISABILITIES ABSOLUTELY
EXPERIENCE HEALTH CARE
DISPARITIES.
THAT'S THE WHOLE PREMISE OF THE
RESEARCH THAT IS BEING OFFERED.
WE WERE FOUNDED TO ADDRESS THOSE
DISPARITIES, ESPECIALLY AS
INDIVIDUALS ARE TRANSITIONING
FROM PEDIATRIC TO THE ADULT
SERVICE SYSTEM.
WE KNOW THAT PREVIOUSLY SPEAKING
THAT THIS EXPERIENCE IS VERY
DIFFICULT AND THAT FOR US, IT IS
RECEIVING BOTH PRIMARY CARE
WITHIN A MEDICAL HOME MODEL AND
THE COMPREHENSIVE CONSULTATIVE
MODEL.
SO WE CAN DO BOTH PRIMARY CARE
OR CONSTITUTIVE CARE.
WE ARE ONE OF THE FEW CLINICS
NATIONWIDE THAT DOES OFFER TEENS
AND ADULTS WITH DEVELOPMENTAL
DISABILITIES IN A
COMMUNITY-BASED SETTING TO
PROVIDE BOTH PRIMARY AND
SPECIALTY CARE IN ONE LOCATION.
NEXT SLIDE, PLEASE.
WE LOOK AT THE VISION OF THE
FAMILY OF THE INDIVIDUAL.
AND WILL FOR EVERYTHING THAT HAS
BEEN SAID IN THE PREVIOUS
PRESENTATIONS, THE JOURNEY IS
WITHIN THAT FAMILY.
IT STARTS WITH THE FAMILY, WITH
THE INDIVIDUAL, THE PARENTS AND
THE OTHER FAMILY MEMBERS,
WHETHER THEY ARE SIBLINGS.
AND WE KNOW THAT IT CHANGES
OFTEN.
SLIDE, PLEASE.
SO FOR US, AS A PRIMARY CARE
HEALTH CARE FACILITY, WE HAVE
SPECIFIC PRIORITIES.
AND THE FIRST PRIORITY,
PRIMARILY, IS THE HEALTH OF OUR
INDIVIDUALS.
WE USE COORDINATED CARE AND WE
MAKE SURE THAT NOT ONLY WE'RE
LOOKING AT PHYSICAL HEALTH, BUT
WE'RE LOOKING AT PSYCHOSOCIAL
HEALTH AND BEHAVIORAL HEALTH.
AND MAKING SURE THAT THAT FAMILY
AS THEY TRANSITION, HAS
INSURANCE ACCESS.
ONCE THAT IS THE PRIMARY GOAL IS
IN PLACE OR IS IN PROCESS, WE
LOOK AT FINANCIAL ITEMS THAT THE
FAMILY WILL NEED AS THEY
TRANSITION FROM PEDIATRIC TO
ADULT SERVICES.
THAT'S SOCIAL SECURITY, SSI,
WAIVERS AND SUPPORTS, AND FOR
THOSE OF YOU AROUND THE COUNTRY,
IT DIFFERS FROM STATE TO STATE.
EMPLOYMENT AND IN PROGRAMMING.
AND THEN WE ALSO ADDRESS THE
LEGAL RAMIFICATIONS WHICH WILL
ADDRESS AND GO INTO A LITTLE BIT
MORE IN JUST A MOMENT.
ONCE THOSE THINGS ARE IN
PROCESS, THE FAMILY IS READY TO
THEN SHARE EXPERIENCES, WHETHER
IT IS THROUGH RESEARCH
OPPORTUNITIES OR SUPPORT GROUPS,
RECREATION AND RESIDENTIAL.
NEXT SLIDE, PLEASE.
SO I WANTED TO REALLY GO INTO A
LITTLE BIT ABOUT WHAT WE MEAN AS
TRANSITIONING TO ADULT SERVICES.
IF FAMILIES HAVE BEEN WITH A
PEDIATRIC GROUP AND SCHOOL
SYSTEM FOR MANY, MANY YEARS.
AND WHEN THAT TRANSITION OCCURS,
IT'S REALLY QUITED DIFFICULT.
UNTIL VERY RECENTLY, THERE WERE
VERY FEW GUIDELINES FOR ADULTS
PAST AGE 21.
WE ARE SO GRATEFUL FOR THE
RESEARCH AND THE APPROVAL AND
PRINTING OF THE CLINICAL
GUIDELINES FOR ADULT CARE WITH
DOWN SYNDROME.
AND ALSO OTHER DEVELOPMENTAL
DISABILITIES.
WE KNOW THAT IN
INTERDISCIPLINARY TEAM IS A
WELL-SUITED WAY TO ADDRESS THE
HEALTH IN THESE, THE FULL-TIME
HEALTH, WHETHER IT IS HEALTH
CARE, PSYCHOSOCIAL OR BEHAVIORAL
CONSIDERATIONS.
AND SO, WE DO THAT WITHIN THE
FRAMEWORK OF A PATIENT-CENTERED
MEDICAL HOME.
NEXT SLIDE, PLEASE.
THE TERM, PATIENT-CENTERED
MEDICAL HOME IS A CERTIFICATION.
AND THIS IS A CERTIFICATION THAT
PRACTICES, MAY ATTAIN THROUGH A
LOT OF TRAINING AND GETTING THE
CERTIFICATION.
IT IS ONE THAT IS ACCESSIBLE,
COMPASSIONATE, COORDINATED,
CONTINUOUS, COMPREHENSIVE AND
FAMILY-CENTERED.
WE ARE VERY LUCKY TO PARTNER
WITH A COMMUNITY-BASED PROGRAM
THAT IS CERTIFIED AS A
PATIENT-CENTERED MEDICAL HOME.
NEXT SLIDE.
THE INDIVIDUAL IS THE ESSENTIAL
MEMBER OF THE TEAM, THAT IS
FIRST AND FOREMOST IT IS THE
INDIVIDUAL THAT HAS MADE
COMFORTABLE AND I WAS SO GLAD TO
HEAR SOME OF THE COMMENTS
PREVIOUSLY THAT REPORTED THAT.
BUT FOR MANY OF THE PATIENTS
THAT COME INTO A MEDICAL
PRACTICE, THEY MAY NOT HAVE BEEN
IN A MEDICAL PRACTICE FOR A VERY
LONG TIME.
AND HAVE EXTREME HIGH ANXIETY.
SO ESTABLISHING RAPPORT, MAKING
THEM FEEL COMFORTABLE, LISTENING
TO THE INDIVIDUAL AND TAKING THE
QUEUES FROM THE INDIVIDUAL IS
PARAMOUNT.
NEXT SLIDE.
I WANTED TO SHARE THIS SLIDE
WITH YOU THAT LOOKS ABOUT ACCESS
TO HEALTH CARE FOR ADULTS WITH
DISABILITIES.
THIS ONE HAS JUST COME OUT.
1-3, ADULTS WITH DISABILITIES
BEING 18-44 YEARS OLD, DON'T
HAVE THEIR USUAL HEALTH CARE
PROVIDER.
THEY DON'T HAVE A PRIMARY CARE
PROVIDER.
1-3 HAVE UNMET HEALTH CARE NEEDS
BECAUSE OF COST.
AND ALARMINGLY, 1-4 HAVE NOT HAD
A ROUTINE CHECK-UP WITHIN THE
PAST YEAR.
THAT IS WHERE WE, AS A PRIMARY
CARE FACILITY AND OTHERS AROUND
THE COUNTRY, NEED TO ADDRESS
THAT ISSUE AND BE ABLE TO MAKE
ACCESSIBILITY MORE AVAILABLE.
NEXT SLIDE.
SO I WANTED TO GIVEN YOU SOME
FACTS THAT WE ENCOUNTER IN OUR
CLINIC WITH TEENS AND ADULTS.
AND WHAT WE HAVE EXPERIENCED.
NEXT SLIDE.
SO THESE ARE QUITE A NUMBER OF
THE COMMON CO-MORBIDITIES IN
ADULTS WITH DOWN SYNDROME.
THE ARROWED ONES ARE THE ONES
THAT OUR DATA SHOWS ARE MORE
PROMINENT WITH THE INDIVIDUALS
THAT WE ARE SEEING.
HYPOTHYROIDISM.
CONGENITAL HEART DISEASE.
ANXIETY.
OCD AND DEPRESSION.
EAR IMPACTION.
SKIN DISORDERS AND RIGHT BEHIND
THAT IS SLEEP APNEA AND AUTISM.
NEXT SLIDE.
SO, WE USE THIS AS A GAUGE AS
TRANSITION TIMES THAT PATIENTS
COME TO US, INDIVIDUALS, AND
FAMILIES COME TO US AND THIS IS
ALSO AN IDEAL TIME TO OFFER
RESEARCH OPPORTUNITIES TO FAMILY
MEMBERS.
ONE IS AT THE AGE OF PUBERTY
AROUND 12 WHERE THE BODY SYSTEM
IS RIGHT ON QUEUE BUT
DEVELOPMENTALLY THAT PERSON HAS
NOT CAUGHT UP WITH WHAT THEIR
BODY IS DOING.
AND THERE IS A LOT OF ISSUES
THAT OCCUR AND QUITE OFTEN,
PEDIATRICIANS WILL THEN REFER TO
US.
THE OTHER MAJOR AGE IS AGE OF
18.
THAT'S THE AGE OF MAJORITY.
AND THERE IS QUITE A BIT OF
TRANSITION THAT GOES ON WITH THE
AGE OF MAJORITY AND WE ARE
GETTING A NUMBER OF CALLS AROUND
THIS AGE.
THAT IS WHERE THE ADULT MEDICAID
COMES INTO PLAY, ACCESS TO
MEDICAID WAIVERS, UNDERSTANDING
WHAT GUARDIANSHIP OPTIONS MAY
BE, THE ELIGIBILITY FOR SOCIAL
SECURITY AND BELIEVE IT OR NOT,
IT MAY ALSO BE VOTING T MAY ALSO
BE JURY DUTY.
IT MAY ALSO ENTAIL JOINING THE
ARMED SERVICES.
THE AGE OF 21, THAT IS TRULY THE
AGE THAT A PERSON IS NECESSARY
TO LEAVE PEDIATRIC HOSPITALS OR
PEDIATRIC SPECIALISTS.
NEXT SLIDE.
THE AGE OF 22, THE END OF
SCHOOL.
AND THAT IS QUITE A BIT OF GREAT
RIGHT NOW BECAUSE OF
OPPORTUNITIES THAT ARE ARISING
ALL AROUND THE COUNTRY FOR
POST-SECONDARY OPPORTUNITIES.
NEXT SLIDE, PLEASE.
SO WHEN IS IT AND HOW IS IT WE
SHARE RESEARCH?
SO, IT'S APPROPRIATE FINDING THE
APPROPRIATE RESEARCH, MAKING
SURE THAT THE INDIVIDUAL AND
FAMILY ARE A GOOD FIT AND
REFERRING THEM TO THAT RESEARCH.
WE ALSO ARE VERY SMALL BUT WE
PARTICIPATE IN RESEARCH AND I
BELIEVE OTHER PRESENTATIONS HAVE
REVIEWED A LOT OF THE
EXPERIENCES IN RECRUITMENT AND
UNDERSTANDING CONSENT FORMS.
SOME OF THE BARRIERS ARE NOT
ONLY THE CULTURAL BARRIERS THAT
HAVE BEEN PRESENTED, BUT ALSO
BEING ABLE TO TRACK THE RESULTS,
KEEPING THE PARTICIPANTS ENGAGED
AND THE LANGUAGE BARRIERS OF THE
PARTICIPANTS BE EXEXPRESSIVE AND
RECEPTIVE LANGUAGE.
NEXT SLIDE.
PUTTING THAT PLAN IN PLACE AND
MY TIME IS ALMOST UP.
I WANTED TO SHARE ONE ITEM WITH
YOU ON THE NEXT SLIDE.
THIS IS EXTREMELY IMPORTANT AND
A GREAT TAKE-AWAY MESSAGE.
FOR PEOPLE WITH DISABILITIES,
THEY SHOULD LIVE IN THE LEAST
RESTRICTIVE, MOST INCLUSIVE
ENVIRONMENT POSSIBLE.
LIKEWISE, ANY LEGAL MEASURES
SHOULD BE THE LEAST RESTRICTIVE
NEEDED, DESIGNED TO PROTECT
INDIVIDUALS WHEN NECESSARY, AND
GIVE THEM INDEPENDENCE AND
AUTONOMY WHENEVER POSSIBLE.
IT LOOKS LIKE MY TIME IS UP.
MY PRESENTATION IS NOT.
I SPOKE MUCH SLOWER THAN MANY OF
THE OTHER PRESENTERS HAVE.
NEXT SLIDE.
IF YOU'LL JUST MOVE TO ONE MORE
SLIDE AFTER THIS.
ONE MORE.
WE HAVE ADAPTED AND WE UTILIZE A
LOT OF THE THINGS THAT HAVE BEEN
SAID IN OTHER PRESENTATIONS,
TELEMEDICINE, VIRTUAL,
COMMUNITY-BASED.
WE ADAPT TO WHAT WE HAVE IN OUR
OFFICES.
OUR TEAM MEMBERS ARE MADE UP OF
SOCIAL WORK BEHAVIOR, MEDICAL,
FAMILY COUNSELING.
NEXT SLIDE.
THERE ARE OUR PATIENTS AND YOU
CAN SEE WE HAVE A LARGE VARIETY
OF INDIVIDUALS, A LARGE AGE
RANGE STARTING FROM AROUND 12
AND OUR OLDEST PATIENT THAT WE
ARE SEEING IS IN THEIR LATE
70s.
AND WE DO HAVE A RESOURCE LIST
ON THE LAST SLIDE.
SOME OF THESE HAVE TO DO WITH
LOCAL OR STATE AGENCIES BUT OF
COURSE, MANY OF THEM HAVE TO DO
WITH NATIONAL AGENCIES.
AND FINALLY -- THANK YOU.
WE ARE IN THE MIDST OF ONE OF
OUR BIG FUNDRAISERS AND SHOUT
OUTS TO OUR INDIVIDUAL THAT IS
WE SERVE.
TAKE A LOOK WAT WE DO ON OUR
WEBSITE.
OUR ADMH RUN FOR HEALTH IS THIS
SATURDAY.
AND I THANK YOU SO MUCH FOR
INCLUDING ME.
I FEEL VERY HUMBLED TO BE WITH
SUCH ILUMINOUS AND AMAZING
PRESENTERS.
THANKS.
>> THANK YOU VERY MUCH.
THE SLIDES WILL BE MADE
AVAILABLE ON THE INCLUDE
WEBSITE.
SO, ANYONE WHO IS INTERESTED
WILL HAVE ACCESS TO THE SLIDES
INCLUDING YOUR VERY HELPFUL
SLIDE WITH ALL THE RESOURCES
LISTED.
SO REALLY APPRECIATE THAT.
SO NOW I WILL REQUEST ALL THE
SPEAKERS OF SESSION 5,, ADORE
CORE TEAM, RECRUITMENT
INNOVATION CENTER TEAM AND YOU
CAN STAY ON, TO JUST COME ON FOR
Q&A AND THEN WE WILL TAKE A
SHORT BREAK.
DO YOU HAVE A QUESTION FROM
DR. SENATORO IN THE CHAT AND I
CAN READ THAT OUT OR --
>> YES, PLEASE READ IT OUT.
>> GIVING THE OPPORTUNITY TO ASK
THE QUESTION.
>> HI, EVERYONE.
YES, THIS IS STEPHANIE SAN TORO.
I WONDERED IF YOU COULD SHARE
THE REFERENCE FOR THAT
STATISTICS YOU GAVE ABOUT 1-3
NOT HAVING A USUAL HEALTH CARE
PROVIDER.
I THINK THAT IS REALLY
INTERESTING AND TRULY LIKE A
CALL TO ACTION.
SO THANK YOU VERY MUCH FOR
SHARING THAT.
>> YES, I SHALL DO THAT.
>> THANK YOU.
I HAD A QUESTION FOR THE
RECRUITMENT INNOVATION CENTER:
YOU PROVIDED THE INFORMATION TO
THE COMMUNITY ENGAGEMENT STUDIO.
AND MY QUESTION IS FOR -- SO I'M
A INVESTIGATOR ON A PROTOCOL
WHICH IS NIH SUPPORTED PROTOCOL
IT'S DS CONNECT REGISTRY.
SO HOW DOES THE CONSULTATION
WORK FOR INTRAMURAL PROTOCOL?
>> I WILL ASK MY COLLEAGUES TO
CORRECT ME IF I SAY ANYTHING
WRONG.
FORMERLY YOU SUBMIT A REQUEST
THROUGH THE TRIAL INNOVATION
NETWORK AND THEN THAT GROUP
EVALUATES ALL REQUESTS AND THEN
PUSHES FORWARD TO THE
RECRUITMENT INNOVATION CENTER
FOR SERVICES FOR MULTI-SITE
TRIALS.
JASMINE AND DEVON AND I SPEAK
CORRECTLY ABOUT OUR CURRENT
PROCESS.
>> YOU ARE SPEAKING CORRECTLY.
YOU GO THROUGH THE 10 BUT YOU'RE
ALSO WELCOME TO E-MAIL US
DIRECTLY.
WE CAN CONNECT WITH YOU DIRECTLY
BUT YES YOU WOULD GO THROUGH IT
THAT WAY.
INITIAL REQUEST FOR
CONSULTATION.
>> I WILL MENTION AS WELL, THERE
ARE CLOSE TO 40 OTHER SITES NOW
THAT DO SOME VERSION OF THE
COMMUNITY ENGAGEMENT STUDIO
ACROSS THE COUNTRY.
SO IT MIGHT BE WORTH SEEING IF
YOUR OWN INSTITUTION MIGHT HAVE
A COMMUNITY ENGAGEMENT STUDIO
PROGRAM OR SOMETHING SIMILAR
THAT THEY COULD IMPLEMENT AS
WELL.
>> I'M PART OF NIH AND I THINK
WE WILL BE LOOKING AT NCATS TO
HELP US.
>> PERFECT.
YES, WE DID DO A DEMONSTRATION
STUDIO AT NCATS PRIOR TO COVID
SO WE CAME OUT AND DID A
DEMONSTRATION STUDIO AND IT WAS
WONDERFUL.
A GREAT EXPERIENCE FOR US.
>> SO YOU ALSO HAVE A QUESTION
FROM.
DO YOU WANT ME TO ASK THAT?
>> I CAN GIVE IT A TRY.
IT'S VERY INTERESTING.
THIS IS MARIA FROM MADISON,
WISCONSIN.
I'M VERY INTERESTED IN YOUR
GROUP STUDIOS.
BUT ONE OF THE KEYS THAT WE
ALWAYS HAVE WORKING FOR LATINAS
AND AFRICAN-AMERICANS AND OTHER
POPULATIONS IS CHILD CARE,
SIBLING CARE, BECAUSE USUALLY
MOMS ARRIVE WITH THE KIDS AND A
LOT OF OTHER KIDS AND WE TRY TO
BE AS WELCOME, TRYING TO FIGURE
OUT HOW TO DO IT IN A WAY THAT
WE COULD BE MORE LIKE FAMILY
OPPORTUNITY AND HAVE COLORING
AND THINGS LIKE THAT, BECAUSE
MORE LIKELY THAN NOT, IT'S A
MAJOR ISSUE THAT I HAVE OR HAVE
IN THE CENTERS TO BE PREPARED TO
RECEIVE A LOT OF PEOPLE
SOMETIMES.
>> ABSOLUTELY.
I THINK YOU ALREADY KNOW THE
ANSWER TO THIS.
YOU ALREADY SAID.
LIKE WHAT WE WOULD GENERALLY DO.
WE TRADITIONALLY HAVE BEEN DOING
THIS FOR 12 YEARS.
WE HAD STUDIOS WIA WIDE RANGE OF
DEMOGRAPHICS AND A LOT OF MOMS
HAVE PARTICIPATED.
WHEN WE WERE DOING IN-PERSON,
WHICH WE TRANSITIONED TO ONLINE
STUDIOS VIA ZOOM ABOUT TWO YEARS
AGO.
SO THAT HAS ELIMINATED A LOT OF
BARRIERS AND WE COULD TALK MORE
OFF LINE ABOUT THAT.
WE WERE DOING IN-PERSON STUDIOS
WE WERE FLEXIBLE AT OUR SITE.
EVERY INSTITUTION HANDLES IT
DIFFERENTLY.
WE ALLOWED MOMS TO BRING THEIR
KIDS WITH THEM.
WE HAVE DONE STUDIOS WITH MOMS
WHO WERE BREASTFEEDING, PROVIDE
SOME SNACKS AND SOME -- WHETHER
IT WAS COLORING BOOKS OR
WHATEVER IT MIGHT BE FOR OUR
SICKLE CELL COMMUNITY ONE MOM IN
PARTICULAR IS A CHAMPION WHOSE
SON ALWAYS CAME AND WE WOULD
ALWAYS PAUSE IN THE STUDIO AND
ASK, DO YOU HAVE ANYTHING YOU
WANT TO ADD?
BECAUSE HE WAS THE PERSON WHO
HAD SICKLE CELL.
SO WE AND OUR SITE JUST TRIED TO
BE REALLY FLEXIBLE AND AS YOU
SAID, REALLY COGNIZANT THAT WE
WERE GOING TO HAVE TO JUST
EMBRACE FAMILIES WHERE THEY WERE
AND BE FLEXIBLE AND I HAVE A
BACKGROUND IN SOCIAL WORK AND
DEVON IN SPECIAL EDUCATION SO WE
BOTH HAVE A LOT OF EXPERIENCE
WORKING WITH FAMILIES AND
CHILDREN.
SO THAT MADE IT A LOT EASIER FOR
US.
>> THERE IS A QUESTION.
DO YOU WANT TO COME OFF MUTE,
JENNIFER?
AND ASK YOUR QUESTION?
>> IT'S NOT ME.
>> OKAY, SORRY.
SO I CAN JUST READ THE QUESTION.
THIS IS FOR THE RECRUITMENT
STUDIO.
THE QUESTION IS, ARE THERE ANY
RECRUITMENT PRACTICES INCLUSIVE
OF FAMILIES AT THE POVERTY
LEVEL?
>> I WILL SPEAK REALLY QUICKLILY
AND THEN HAVE DEVON OR JASMINE
JUMP IN.
PARTICULARLY WHEN WE MOVE TO
REMOTE STUDIOS BUT EVEN
IN-PERSON, WE DO A LOT OF
RECRUITMENT VIA COMMUNITY-BASED
ORGANIZATIONS WHICH ALLOWS US TO
RECRUIT A WIDE DIVERSITY OF
INDIVIDUALS ACROSS THE SES
CONTINUUM.
SO OUR STUDIOS ARE CUSTOMIZED
FOR THE RESEARCHER OF INTEREST.
SO THEY TELL US, I KNOW OUR TEAM
WILL HAVE A REALLY DIFFICULT
TIME RECRUITING INDIVIDUALS WHO
ARE ADD ROAR BELOW THE POVERTY
LEVEL.
I'D LOVE TO HEAR FROM THAT
COMMUNITY.
THEN THAT IS WHERE WE FOCUS IN
OUR RECRUITMENT.
AND WE USUALLY WOULD FIND
INDIVIDUALS VIA SOCIAL MEDIA,
THROUGH COMMUNITY ORGANIZATIONS
WHO ALREADY PARTNER WITH AND
COLLABORATE AND PROVIDE SERVICES
TO THAT PARTICULAR DEMOGRAPHIC
OF FOLKS.
SO, WE WERE ABLE TO EASILY PULL
IN PEOPLE FROM A WIDE RANGE OF
BACKGROUNDS AND EXPERIENCES.
BUT DEVON, DO YOU WANT TO ADD A
COUPLE OF EXAMPLES?
>> FOR SURE.
I THINK TWO THINGS THAT
IMMEDIATELY COME TO MIND IS ONE,
THAT FLEXIBILITY.
SO WHEN WE'RE THINKING ABOUT
BRINGING IN FOLKS WHO HAVE OTHER
OBLIGATIONS BEING ABLE TO MEET
THEM AT THEIR TIME AND THAT
MIGHT NOT BE WHAT WE WOULD
CONSIDER -- MATED BE OUTSIDE OF
OUR COMFORT LEVEL BUT WE WANT TO
PRIORITIZE THEM BECAUSE THEY ARE
WORKING WITH US AND THEY ARE
MARGINALIZED COMMUNITY.
BEING FLEXIBLE.
WEEKENDS OR MEET THEM IN THE
EVENING AT 6 OR 7:00, THAT'S
WHEN WE DO IT.
A SECOND THING WOULD BE, BEING
VERY MINDFUL AND FLEXIBLE WITH
OUR COMPENSATION AND SHARING
WITH TEAMS ABOUT THAT
COMPENSATION AND WHAT THEY USE
FOR COMPENSATION.
SO WHETHER IT'S A GIFT CARD,
WHETHER IT'S CHECK OR CASH,
WHETHER IT'S PART OF THE
COMPENSATION IS SOMETHING TO
ENSURE THAT FOLKS HAVE ACCESS TO
RESOURCES IT'S JUST BEING REALLY
FLEXIBLE ABOUT THE NEEDS OF
THOSE COMMUNITIES AND THEN
STRUCTURING COMPENSATION AROUND
THAT.
AND WE HAVE SEEN THAT THAT WAS
PRETTY HELPFUL.
>> AND TO DEVON'S POINT, WE
CONDUCT STUDIOS IN THE SPACES
WHERE PEOPLE ARE ALREADY
COMFORTABLE.
SO IF THEY ARE ALREADY A PART OF
A GROUP, WHETHER WE DO IT AT A
SCHOOL OR COMMUNITY CENTER OR
HEALTH DEPARTMENT, WHEREVER THEY
ARE ALREADY GOING TO BE AND
THERE A FEEL COMFORTABLE AND AT
HOME SO WE DON'T HAVE TO TAKE
FOLKS OUT OF SPACES WHERE THEY
ALREADY ARE TRUSTED AND IT'S
EASY FOR THEM TO NAVIGATE.
*6.
>> SO THERE IS ANOTHER QUESTION
FROM TAMARA WHO IS HERE FROM THE
NATIONAL DOWN SYNDROME CONGRESS,
WHICH IS ONE OF THE PARTNERS ON
THE DOWN SYNDROME CONSORTIUM.
SO SHE IS ASKING, AND THIS IS
FOR ALL SPEAKERS, I THINK,
WHOMEVER WANTS TO RESPOND.
HOW CAN THE NATIONAL AND LOCAL
ORGANIZATIONS SERVING THE DOWN
SYNDROME COMMUNITY BETTER HELP
PROMOTE AND HELP WITH
RECRUITMENT?
>> THIS IS DR. HARTLEY.
I APPRECIATE THAT QUESTION.
ONE THING I ALWAYS APPRECIATE IS
IF ORGANIZATIONS REACH OUT
AND - EYE KNOW MS. AND MEMBERS
OF OUR TEAM ARE ALWAYS HAPPY TO
GIVE PRESENTATIONS OR TO HELP
PROVIDE EDUCATIONAL MATERIAL.
SO JUST NOT TO HESITATE TO REACH
OUT AND LET US KNOW WHAT
COMMUNITY -- WHAT YOUR COMMUNITY
WOULD BENEFIT FROM TO MAKE THAT
CONNECTION SO WE CAN JUST MEET
MEMBERS OF THE COMMUNITY YOU'RE
SERVING, GET TO KNOW YOUR
ORGANIZATION.
SO, I WOULD JUST SAY ONE THING I
LOVE IS IF YOU CAN HELP US
IDENTIFY ANY OPPORTUNITIES FOR
US TO PROVIDE SOME OF THAT
EDUCATION AND TO MEET MEMBERS OF
WHO YOU'RE SERVING.
>> AND THE NEXT QUESTION IS
RELATED.
SO SPECIAL OLYMPICS IS AGAIN
ANOTHER CONSOARED YUM PARTNER
BUT ALSO HAS A LOT OF REACH WITH
INDIVIDUALS, ESPECIALLY IN THE
DOWN SYNDROME SPACE.
WE HAVE HERE Mr. DAVE ID EGAN
WHO HAS -- I DON'T KNOW HOW MANY
HUNDREDS OF MEDALS FROM SPECIAL
OLYMPICS AND ALSO PART OF THE
CONSORTIUM.
SO JENNIFER'S QUESTION IS, ANY
RECRUITMENT HAPPENING AT SPECIAL
OLYMPIC STATE GAMES?
I KNOW THAT THEY ARE -- THE DOWN
SYNDROME PARTNER ON THE
CONSORTIUM AND WE MEET AT LEAST
ONCE IN PERSON IN CONJUNCTION
WITH NATIONAL DOWN SYNDROME
CONGRESS, ANNUAL CONVECTION AND
ALSO ONCE VIRTUALLY AND WE TRY
TO UPDATE, GET UPDATED ON THE
EVENTS THAT ALL THE CONSORTIUM
PARTNERS ARE POSTING OR
ORGANIZING AND TRY TO BE
AVAILABLE.
BUT I DON'T THINK WE HAVE -- WE
AT NIH HAVE ATTENDED ANY EVENT
THAT SPECIAL OLYMPICS HAS HOSTED
BUT WE WOULD -- I WOULD LOVE TO
IF THERE ARE EVENTS WE CAN
OUTREACH WHAT WE ARE DOING IN
THE DOWN SYNDROME SPACE.
ANYONE ELSE HAS HAD ANY
INTERACTIONS WITH SPECIAL
OLYMPIC FOR ADVERTISING,
RECRUITING?
>> SO OUR ABC-DS STUDY HERE AT
WISCONSIN WENT TO THE WISCONSIN
STATE SPECIAL OLYMPICS A FEW
MONTH BACK.
AND WE SET UP A TABLE AND IN
THERE WHAT WAS CALLED VICTORY
VILLAGE, IF YOU'RE FAMILIAR WITH
THE STATE SPECIAL OLYMPICS AT
ALL.
AND WE DID RECRUIT FROM
PARTICIPANTS.
AND WE DID HAVE SUCCESS THERE AS
WELL.
WE WERE ABLE TO RECRUIT AT LEAST
ONE THAT I'M CERTAIN WHO IS
GOING TO PARTICIPATE IN OUR
STUDY MOVING FORWARD.
AND A FEW OTHER POTENTIALS.
SO WE DID HAVE A GOOD EXPERIENCE
WITH OUR STATE HERE IN
WISCONSIN.
>> I CAN TELL YOU FROM A
PERSPECTIVE OF A MEDICAL PRIMARY
CARE.
WE COLLABORATE QUITE A BIT WITH
SPECIAL OLYMPICS AND OTHER
RECREATIONAL PROGRAMMING.
MANY OF THEM REQUIRE A MEDICAL
RELEASE.
SO WE ARE A GOOD MEMBER OF
PROVIDING THAT.
ANYONE WHO PARTICIPATES IN
SPECIAL OLYMPICS MUST HAVE A
MEDICAL RELEASE FORM SIGNED -- I
THINK IT'S EVERY OTHER YEAR.
SO, WE ARE VERY MUCH AWARE AND
USE THAT AS PART OF OUR
CONTINUITY OF CARE.
AND ABSOLUTELY UTILIZE IT AS A
RESOURCE FOR INDIVIDUALS TO GET
BACK AND SOCIALIZE AND BE
HEALTHY.
AND IT'S FINALLY AN IN-PERSON
PARTICIPATION NOW.
FOR A LONG TIME IT WAS NOT.
>> THANK YOU.
AND THEN, DR. ROSSER HAS A
COMMENT THAT THEY HAVE RECRUITED
IN GEORGIA WITH SPECIAL
OLYMPICS.
SO MAYBE WE CAN CONNECT OFF
LINE, BECAUSE I DO THINK THAT
SPECIAL OLYMPICS HAS THE
MEMBERSHIP AND THE FAMILIES THAT
PARTICIPATE.
WE HAVE NOT BEEN INVOLVED IN
DIRECT OUTREACH WITH THEM.
SO GOOD TO KNOW THAT WE CAN
REACH OUT TO YOU.
>> DEFINITELY.
>> ALL RIGHT.
SO, I DON'T SEE ANY OTHER
QUESTIONS.
WE WILL TAKE A 10-MINUTE BREAK.
PLEASE STRETCH YOUR LEGS, ARMS,
NECK, BACK.
AND LET'S BE BACK IN 10 MINUTES
SO THAT WOULD BE 3:20 P.M.
EASTERN TIME, FOR OUR LAST
SESSION, SESSION 6, WHICH WILL
BE MODERATED BY DR. STINSON.
SEE YOU ALL IN 10 MINUTES.
>>I'D LIKE TO WELCOME EVERYONE
BACK FOR THE BEGINNING OF
SESSION 6, LESSONS LEARNED IN
COMMUNITY ENGAGEMENT.
WE HAVE FOUR PRESENTERS.
FIRST PRESENTER WILL BE A
DOUBTER DOUBTER THE PRESIDENT OF
THE -- KATE DOUGHERTY THE
PRESIDENT OF THE NATIONAL DOWN
SYNDROME CONGRESS AND IS THE
OLDEST AND LARGEST ORGANIZATION
ON BEHALF OF INDIVIDUALS WITH
DOWN SYNDROME.
SHE IS ALSO THE PRESIDENT AND
FOUNDER OF DOWN COUNTY, A RURAL
NONPROFIT AWARENESS AND
EDUCATION INITIATIVE OPERATING
UNDER THE FUNDAMENTAL PRINCIPLES
THAT EVERY CHILD IS A GIFT,
EVERY CHILD CAN LEARN AND EVERY
CHILD LEARNS DIFFERENTLY.
HOW GREAT IS THAT?
FUN FACT.
SHE CURRENTLY COHOSTS A RADIO
SHOW THE TITLE I BELIEVE IS,
EVERYONE TALKING ABOUT
EVERYTHING ON WGEM105.1FM ON
SUNDAY MORNINGS IF YOU HAVE TO
BE IN THAT GEOGRAPHIC AREA AND
YOU CAN LISTEN TO IT YOU SHOULD
TUNE IN.
>> KATE DOUGHERTY: THANK YOU
VERY MUCH.
THANK YOU FOR HAVING ME.
I'M GOING TO DO I MY BEST TO
SPEAK SLOWLY AND NOT TALK WITH
MY HANDS BECAUSE WE ALL THAN
MESSES UP ZOOM BACKGROUNDS.
DOWN COUNTRY AND AND WHEN I
LIVE, IS ABOUT AS RURAL AS RURAL
CAN HUMANLY POSSIBLY BE.
AND I DON'T KNOW IF THE VIDEO
WILL ROLL OR NOT BUT IT ALL
BEGINS IN A RURAL COMMUNITY
ESSENTIALLY WITH THE DELIVERY OF
A DIAGNOSIS.
AND WHEN WE'RE TALKING ABOUT THE
DELIVERY OF A DIAGNOSIS, THERE
IS MANY THINGS THAT ARE SHARED.
HOWEVER, I GUARANTEE NO ONE TOLD
ME THAT MY 6-YEAR-OLD WITH DOWN
SYNDROME WOULD BE SHOEING A
HORSE.
THIS VIDEO IS A LITTLE OLD.
ELLIOT IS 14 NOW BUT WHILE WE
UNDERSTAND WE MEDICALLY HAVE TO
SHARE ALL THESE THINGS THAT MAY
OR MAY NOT GO WRONG AS PART OF
JOINING THE JOURNEY AND
CONNECTING COMMUNITIES, IT'S
REALLY IMPORTANT THAT WE HELP
PEOPLE, ESPECIALLY IN RURAL
AREAS, UNDERSTAND WHAT'S
POSSIBLE; BECAUSE ONE OF THE
WAYS WE KNOW IN RURAL
COMMUNITIES THAT WE CAN BEGIN TO
ENACT TRUE CHANGE -- AND IF YOU
GO TO THE NEXT SLIDE -- IS BY
USING SOMETHING CALLED POSITIVE
PRESSURE.
OR THAT'S WHAT WE CALL IT HERE
IN DOWN COUNTRY.
AND CREATING COMMUNITIES.
AND WHEN I SAY CREATING
COMMUNITIES, I DON'T KNOW IN A
RURAL AREA THAT IT'S EXACTLY THE
SAME AS WHAT IT LOOKS LIKE IN A
MORE METROPOLITAN AREA.
WHICH I THINK IS ONE OF THE
THINGS THAT WHEN WE LOOK AT WHAT
THIS LOOKS LIKE IN A RURAL AREA,
THERE IS A SIGNIFICANT LACK OF
EXPOSURE OVERALL, NOT JUST TO
INDIVIDUALS WITH DOWN SYNDROME
OR INDIVIDUALS WITH
DISABILITIES, BUT TO MANY OTHER
DEMOGRAPHICS AS WELL.
AND WHEN WE'RE TALKING RURAL
AREAS, MANY OF THE PEOPLE HAVE
LIVED THERE ALL THEIR LIVES.
AND SO IT'S NOT EXACTLY THE SAME
AS WHEN YOU GO INTO A
METROPOLITAN AREA AND YOU SNAP
YOUR FINGERS AND YOU SAY, WE'LL
JUST HAVE A VISION THERAPIST
COME IN.
OR WE'LL JUST HAVE THIS.
OR WE'LL JUST HAVE THAT.
IN MY CASE, IN THE ENTIRE
DEMOGRAPHIC OF THE TRISTATE
AREA, THERE ARE EXACTLY SEVEN
ADA SPECIALISTS.
IN ST. LOUIS, IF I WANT A VISION
THERAPIST, THERE IS A SIX MONTH
WAIT, 2 1/2 HOUR DRIVE.
SO WHEN WE TALK ABOUT IN RURAL
AREAS CREATING COMMUNITY AND
POSITIVE PRESSURE, WE MEAN WE
NEED TO INCLUDE EVERYONE AS PART
OF OUR STORY.
NEXT SLIDE.
AND WHEN I SAY THAT -- PLEASE --
HOW DO WE DO THIS?
IT'S BY REACHING OUT.
WHEN I SAY REACHING OUT, I MEAN
IT'S TO COMMUNITY MEMBERS, IT'S
TO TEACHERS, IT'S TO THERAPISTS,
IT'S TO PEOPLE AND FAMILIES WITH
DOWN SYNDROME, IT'S TO CLINICS,
IT'S EVERYONE.
BECAUSE ONE OF THE VERY FIRST
THINGS WE HAVE TO UNDERSTAND
WHEN WE'RE TALKING ABOUT HOW WE
CAN REACH PEOPLE IN RURAL
AREAS -- AND GUYS, MY INTERNET
UP UNTIL THIS WEEK, WAS FADING
IN AND OUT FOR THE LAST THREE
WEEKS.
I WAS TERRIFIED FOR THIS
PRESENTATION.
LIKE, THE ISSUES FAMILIES ARE
DEALING WITH IN RURAL AREAS,
ESPECIALLY WHEN YOU START
TALKING ABOUT GOING DOWN GRAVEL
ROADS -- AND IT'S GREAT TO HAVE
TELEHEALTH OPTION OR TELETHERAPY
OPTIONS BUT GUESS WHAT?
ZOOM DOESN'T WORK IF YOU DON'T
HAVE A WORKING Wi-Fi
CONNECTION.
SO, THERE ARE MAJOR DIFFERENCES
HERE AND WHEN WE GO TO THE NEXT
SLIDE ONE OF THE THINGS WHEN
WE'RE TALKING ABOUT WAYS TO
CREATE COMMUNITY ENGAGEMENT, WE
ALSO HAVE TO FIRST LOOK AT EVEN
THE LANGUAGE.
SO, IN A METROPOLITAN AREA, IF I
USE THE TERM, SUPPORT, NOBODY
THINKS ANYTHING ABOUT IT.
YOU HAVE A WATER SUPPORT
SERVICE.
YOU HAVE VARIOUS SUPPORTS.
IT HAS ABSOLUTELY NO NEGATIVE
CONNOTATION.
IN A RURAL AREA, THERE IS NOT
SUPPORT.
AND SO EVEN SOMETHING AS SIMPLE
AS THAT WORD, LET'S SAY A DOWN
SYNDROME SUPPORT GROUP, HAS A
NEGATIVE CONNOTATION BECAUSE ONE
OF THE INSTANT FEEDBACKS THAT
YOU'LL VERY OFTEN GET FROM A
RURAL AREA IS I DON'T NEED
ANYBODY'S HELP.
I DON'T NEED THAT SUPPORT.
HOWEVER, YOU RENAME THAT EXACT
SAME GROUP WITH THE EXACT SAME
FUNCTION, DOWN SYNDROME FRIENDS
AND FAMILY GROUP, YOU WILL HAVE
50 PEOPLE SHOW UP.
IT'S HOW -- THERE IS A DIFFERENT
MINDSET WHEN YOU'RE LOOKING AT A
RURAL VERSUS METROPOLITAN
DYNAMIC.
AND SO WHEN YOU'RE LOOKING AT
THAT, YOU HAVE TO DEFINE YOUR
RURAL COMMUNITY.
MY RURAL COMMUNITY IN MISSOURI,
ILLINOIS AND IOWA RIGHT ON THREE
STATE LINES IS DIFFERENT FROM
WHAT YOU'RE GOING TO FIND IN A
RURAL COMMUNITY IN TEXAS.
HOWEVER WHEN YOU START LOOKING
IN THESE RURAL COMMUNITIES, AND
IN THESE DIFFERENT DEMOGRAPHICS,
ONE OF THE THINGS YOU'RE VERY
OFTEN GOING TO FIND IS THAT WAIT
A SECOND, WHEN YOU LOOK AROUND,
VERY OFTEN THERE AREN'T MANY
PEOPLE WITH DOWN SYNDROME
AROUND.
AND SO, HOW ALONE DOES THAT MAKE
PEOPLE FEEL?
BUT THE REALITY IS, THERE ARE SO
MANY MORE PEOPLE THAT ARE
FAMILIES AND CHILDREN AND ADULTS
WITH DOWN SYNDROME, TRULY ARE
NEVER ALONE.
BUT YOU HAVE TO CREATE THE
COMMUNITY.
ONE OF THE WAYS WE HAVE TO DO
THAT IS BREAKDOWN THE BARRIERS
BY WHICH WE SELF ISOLATE
OURSELVES AND WE SAY, NOBODY
COULD EVER UNDERSTAND BECAUSE I
HAVE A CHILD OR A ADULT WITH
DOWN SYNDROME.
AND THEY DON'T HAVE THAT SAME
EXPERIENCE.
IT'S NOT NECESSARY.
NOR WOULD I SAY IT'S REALISTIC
TO EXPECT EVERY HUMAN WHO COMES
CONTACT WITH YOU TO HAVE THE
SAME LEVEL OF EXPERIENCE OR
EXPOSURE, NOT JUST TO DOWN
SYNDROME, BUT TO INDIVIDUALS
WITH DISABILITIES AS A WHOLE.
BUT THAT'S ONE OF THE WAYS WE
CAN BEGIN TO BREAKDOWN THE
BARRIERS IS BY BRINGING OUR
FRIENDS AND OUR FAMILY AND
BEGINNING THAT BASELINE LEVEL OF
EDUCATION AND EXPOSURE AND QUITE
FRANKLY, MY ENTIRE GROUP MAKES
FUN OF ME BECAUSE I VERY
FREQUENTLY SAY, MAKE IT PRETTY!
MAKE IT BEAUTIFUL!
MAKE IT FUN!
BECAUSE ONE OF THE THINGS WITHIN
THE DISABILITY COMMUNITY AS A
WHOLE HISTORICALLY WE HAVE DONE,
IS WE HAVEN'T MADE IT PRETTY.
WE HAVEN'T MADE IT FUN.
WE HAVE MADE IT INFORMATIVE.
WE'VE MADE IT SERIOUS.
WE'VE MADE IT WHERE WE -- WE
HAVEN'T MADE IT FUN.
WHEN WE MAKE THINGS FUN, WHEN WE
MAKE THINGS BEAUTIFUL, WHEN WE
MAKE THINGS PRETTY, WHEN WE
CELEBRATE THE JOY THAT IS THAT
EXTRA CHROMOSOME, IT'S
ATTRACTIVE TO FAMILIES.
WHEN YOU SHOW ELLIOT SHOWING A
HORSE, WHEN YOU SHOW MY ADORABLE
LITTLE GIRL HERE ON A FERRIS
WHEEL RIDE, DON'T YOU WANT TO
HOP IN AND HELP HER AND LEARN
MORE AND BECOME HER FRIEND?
WHEN YOU'RE TALKING ABOUT
CREATING COMMUNITIES AND TALKING
ABOUT HUE TO GET FAMILIES
INVOLVED IN RESEARCH AND HOW YOU
GET THESE THINGS, YOU BEGIN TO
THOUGH THEM WHAT IS POSSIBLE.
AND I UNDERSTAND, PLEASE, NEXT
SLIDE -- THAT ALL OF OUR
INDIVIDUALS HAVE DIFFERENT
LEVELS OF WHAT IS POSSIBLE.
BUT ONE OF THE THINGS IN RURAL
AREAS WE'RE LACKING IS THE
EXPOSURE, EXPERIENCES AND
PERSPECTIVES.
AND THOSE EXPOSURES, EXPERIENCES
AND PERSPECTIVES ALLOTTEDDER AND
CHANGE LIVES AND THE TRAJECTORY
OF HOW WE VIEW INDIVIDUALS AND
DISABILITY AND RESEARCH AND
MEDICAL AND EDUCATIONAL
POSSIBILITIES AS A WHOLE.
NEXT SLIDE, PLEASE.
THIS IS RUTH.
RUTH IS ONE OF MY BOARD MEMBERS
GRANDMOTHER'S SISTERS.
RULE WAS BORN IN 1930 ROCKING AN
EXTRA CHROMOSOME.
SHE ACTUALLY LIVED UNTIL 2001.
UNFORTUNATELY, HER SISTER, WHEN
HER -- MY BOARD MEMBER'S
GRANDMOTHER AND RUTH WENT TO
SCHOOL, RUTH WAS NOT ALLOWED TO
ATTEND SCHOOL.
AND SO, SHE STAYED HOME.
SHE STAYED HOME ON THE FAMILY
FARM.
SHE WAS FULLY INCLUDED IN
EVERYTHING.
AND MY BOARD MEMBER'S
GRANDMOTHER WHO IS 88, MOURNS TO
THIS DAY THE FACT HER SISTER
DIDN'T GET TO SHARE THE SAME
LIFE EXPERIENCES SHE DID.
AND THEY ARE BOTH PASSIONATE AND
ACTIVELY INVOLVED IN THIS
COMMUNITY, QUITE FRANKLY BECAUSE
OF RUTH.
THE NEXT SLIDE IS A GENTLEMAN
BY -- A KIDDO BY THE NAME OF
CLINT.
CLINT WAS THE VERY FIRST CHILD
IN THE STATE OF MISSOURI TO BE
RELEASED FROM A HOSPITAL NICU
SETTING TO A HOME.
CLINT LIVED ONE MILE FROM ME.
HIS MOM, HE WAS BORN IN 1980
WHEN I WAS 6 YEARS OLD.
HE WAS SUPPOSED TO LIVE 9
MINUTES.
HE LIVED 9 YEARS.
I'M 48 YEARS OLD AND THERE IS
NOT A DAY THAT GOES BY THAT I
DON'T THINK ABOUT CLINT BECAUSE
I WAS LUCKY ENOUGH TO HAVE A
MOTHER WHO EXPOSED ME TO A CHILD
WHO WAS NOT VERBAL, WHO NEVER
TOOK A BREATH ON HIS OWN, WHO
SMILED AND HAD THE MOST GORGEOUS
EYES I EVER SEEN IN MY ENTIRE
LIFE.
AND I WOULD ASK MY MOM WHY JANE
WOULD CRY SOMETIMES?
SHE WOULD SAY JANE JUST WANTS
CLIN TO BE INCLUDED AND PEOPLE
DON'T UNDERSTAND THAT.
YOU HAVE TO REMEMBER 1980, WE
WEREN'T VERY COOL WITH
INDIVIDUALS WITH DISABILITIES.
BUT THAT EXPOSURE FOR EVER
ALTERED HOW I VIEWED CHILDREN
AND ADULTS WITH DISABILITIES.
SO I DIDN'T RECOGNIZE UNTIL MY
OWN SON WAS BORN, WE STILL HAVE
MANY PEOPLE WHO FEAR OUR
CHILDREN AND ADULTS WITH DOWN
SYNDROME.
AND THAT FEAR BY OTHERS VERY
OFTEN KEEPS, ESPECIALLY OUR
RURAL FAMILIES, FROM CHOOSING TO
PARTICIPATE IN MANY OF THE
RESEARCH THAT COULD POTENTIALLY
ALTER AND HELP IMPROVE THE
QUALITY OF THEIR LIVES.
NEXT SLIDE.
PLEASE.
IF WE CAN FULLY BEGIN TO
UNDERSTAND THE POWER OF EXPOSURE
TO OUR KIDS, WE CAN CAN BEGIN TO
ERADICATE THE FEAR OF STUDIES.
AND THEY ARE THERE.
THE MISCONCEPTIONS ABOUND.
WHEN I WAS TALKING TO JANE TO
FIND OUT EXACTLY WHAT YEAR CLINT
WAS BORN BACK IN 1980, SHE ASKED
ME IF I EVER SPOKE ABOUT BRUCE.
BRUCE IS A GENTLEMAN WHO
HAPPENED TO HAVE DOWN SYNDROME.
HIS 90-YEAR-OLD MOTHER FELL AND
BROKE HER HIP.
THEY BOTH WENT TO OUR LOCAL
NURSING HOME.
THEY CALLED ME AND SAID, WE
DON'T UNDERSTAND.
WE HAVE GOT STAFF THAT ARE A
LITTLE NERVOUS.
AND I'M LIKE NERVOUS OF BRUCE,
WHY?
BECAUSE BRUCE WEIGHED ABOUT 85
POUNDS AND LUGGING AROUND AN
OXYGEN TANK.
AND AS I WAS SPEAKING, THEY SAID
EVERY DAY WHEN THE STAFF GOES
AND HANGS UP THE BULLETIN, HE
FOLLOWS THEM OVER THERE AND IT
MAKES THEM EXTREMELY NERVOUS.
TO WHICH MY RESPONSE WAS, YOU
ARE AWARE BRUCE CAN READ,
CORRECT?
THEY SAID, WHAT?
WE DIDN'T KNOW THAT WAS
POSSIBLE.
I SAID, YES, BRUCE CAN READ.
HE LIKES TO READ THE BIBLE QUITE
FREQUENTLY AND HE CAN TELL YOU
ALL OF THE KLANS OF SCOTLAND AND
IRELAND IF YOU ASK HIM.
PERHAPS HE HE'S GOING TO THE
BULLETIN BOARD TO FIND OUT WHAT
ACTIVITIES ARE GOING ON IN THE
NURSING HOME.
HAS HE BEEN ATTENDING?
YES, HE HAS.
THESE ARE JUST SOME EXAMPLES OF
THE OUTDATED MISCONCEPTIONS AND
THE FEAR THAT IF YOU LACK
EXPOSURE, THESE THINGS INTERFERE
BECAUSE THIS IS WHAT OUR
FAMILIES OF ADULTS AND CHILDREN
WITH DOWN SYNDROME ARE DEALING
WITH ON A DAILY BASIS.
NEXT SLIDE, PLEASE.
THE BIGGEST BARRIERS IN RURAL
AREAS TO THIS DAY ARE
SEGREGATION, ISOLATION, LACK OF
EXPOSURE, LACK OF ACCESS TO BEST
PRACTICE ACROSS ALL AREAS, LACK
OF INCLUSION, HOWEVER, IF YOU
CAN CREATE A COMMUNITY AND
CULTURE IN THE RURAL AREA
BECAUSE YOU'RE EXPOSING AND
GETTING THE KIDS AND THE ADULTS
AROUND YOU WILL BECOME YOUR
STRONGEST ADVOCATES FOR YOUR
CHILDREN WITH DOWN SYNDROME.
NEXT SLIDE, PLEASE.
IF LIFE IS ABOUT PERSPECTIVE,
MANY TIMES OUR PERSPECTIVE IS
SKEWED WITHOUT OUR KNOWLEDGE.
PERSPECTIVE IS BASED UPON OUR
EXPERIENCES, OUR JOURNEYS, OUR
EXPOSURES THROUGH LIFE.
NEXT SLIDE, PLEASE.
BACK UP, PLEASE.
ONE OF THE THINGS THAT HAPPENS
THAT I HEAR FREQUENTLY WHEN I GO
IN AND MEET WITH THE SCHOOL OR
IN A LOCAL AREA, AND WE'RE
DISCUSSING BASIC ACCOMMODATIONS
OR POSSIBILITIES FOR CHILDREN
AND ADULTS WITH DOWN SYNDROME,
IS THEY SAY, YOU EXPECT ME TO DO
THIS FOR JUST ONE CHILD?
NO.
I DON'T.
I EXPECT YOU TO DO IT FOR EVERY
CHILD.
NEXT SLIDE, PLEASE.
PERSPECTIVE CAN PERPETUATE
STEREOTYPES AND PREJUDICE
WITHOUT OUR AWARENESS.
LESS THAN 30% KNOWS SOMEONE WITH
DOWN SYNDROME.
THIS IS HOW DISSEMINATION LIVES
ON.
NEXT SLIDE, PLEASE.
EDUCATION IS THE KEY.
UNDERSTANDING WHAT IS MISSING.
TECHNOLOGY FOR KIDS WITH
DISABILITIES MAKES THINGS
POSSIBLE.
ONE OF THE STRUGGLES IS HELPING
PEOPLE UNDERSTAND HOW TO USE
TECHNOLOGY IN A MEANINGFUL
FASHION.
I WALK INTO CLASSROOMS ALL THE
TIME AND I SEE OUR KIDS WITH LOW
MUSSEL TONE AND THEIR --
[ BACKGROUND NOISE ]
LOW MUSSEL TONE IN THEIR EYES,
THEY AREN'T GOING TO SCORE WELL.
HOWEVER, WHEN USED IN A
MEANINGFUL FASHION, TECHNOLOGY
ALTERS THE PLAYING FIELD TO MAKE
IT MUCH MORE POSSIBLE.
NEXT SLIDE.
NEXT SLIDE, PLEASE.
ONE OF THE THINGS THAT IS REALLY
IMPORTANT WHEN WE'RE TALKING
ABOUT RURAL AREAS IS TALKING
ABOUT ACCEPTING WHAT HAS BEEN.
BECAUSE WE HAVE TO LET THAT GO.
AND THAT MEANS THE PAST OF THE
RURAL AREAS AS IT RELATES TO
THINGS THAT HAPPENED TO US AS
PARENTS AND FAMILY MEMBERS OF
SOMEONE WE LOVE WHO HAPPENS TO
HAVE DOWN SYNDROME.
WE HAVE TO LIVE WITH WHAT IS.
LIKE THE NOW.
LIKE THIS IS WHAT IS HAPPENING
RIGHT NOW.
AND WE HAVE TO LOOK -- NEXT
SLIDE, PLEASE -- WITH HOPE
TOWARDS THE FUTURE.
THE VERY REAL REALITY IS IF
NOBODY TOLD ME HOW AMAZING
ELLIOT WAS GOING TO BE AND
NOBODY SAID HE WAS GOING TO BE
SHOEING HORSES, YOU KNOW SOMEONE
WHO DOESN'T HAVE A CHILD OR AN
ADULT WITH DOWN SYNDROME, THEY
AREN'T BEING TOLD THAT.
NEXT SLIDE, PLEASE.
WE HAVE TO CHANGE THE NARRATIVES
TO FOCUS ON STRENGTHS.
WHEN WE BUILD FROM THERE.
WE RECRUIT PEOPLE FOR MEDICAL
RESEARCH WE ALSO NEED TO RECRUIT
BASED ON STRENGTHS.
HOW ARE WE GOING TO HELP?
WHAT DO WE HAVE THAT IS VALUE
ADDED?
NEXT SLIDE, PLEASE.
DOWN SYNDROME DOES NOT
DISCRIMINATE.
IT'S IN RURAL AREAS, IT'S IN ALL
OF OUR COMMUNITIES.
WHATEVER ETHNICITY OR GENDER YOU
WISH TO IDENTIFY AS.
CREATE -- NEXT SLIDE, PLEASE.
WE HAVE TO CREATE A COMMON
PURPOSE.
WE HAVE TO FIND -- NEXT SLIDE,
PLEASE.
WE HAVE TO FIND THE JOY.
WE HAVE TO CELEBRATE.
WE HAVE TO BUILD OUR COMMUNITY
AND BEGIN THE JOURNEY.
NEXT SLIDE, PLEASE.
AND WHEN WE CREATE THIS
COMMUNITY, WE HAVE TO FOCUS ON
PRESENTING THE POSSIBILITIES,
WHAT IS VALUE ADDED FOR FAMILIES
AND ADULTS?
NEXT SLIDE, PLEASE.
BECAUSE THE POSSIBILITIES BOTH
MEDICAL RESEARCH AND EDUCATIONAL
QUALITIES IS TO INCREASE ACCESS
ACROSS THE LIFESPAN.
NEXT SLIDE, PLEASE.
PLEASE DON'T FORGET, NO ONE
TELLS YOU THE GOOD STUFF.
MEDIAONE 01, ONE OF THE MOST
POWERFUL WAYS TO HELP FAMILIES,
ESPECIALLY IN RURAL COMMUNITIES
IS TO ENCOURAGE THEM TO SHARE
THEIR STORIES TO ENCOURAGE THEM
TO LET OTHERS IN AND NOT SELF
ICE LATE AND NOT SELF SEGREGATE.
NEXT SLIDE, PLEASE.
IF THE WHOLE GOAL IS TO CREATE A
CULTURE SHIFT AND THAT IS MY
GOAL WITH DOWN COUNTRY AND MY
GOAL WITH WHAT WE'RE WORKING TO
DO WITH THE NATIONAL DOWN
SYNDROME CONGRESS.
LIKE EXPOSURE, EDUCATION,
EXPERIENCE, CHANGE.
LIKE ALL OF THESE PIECES BECOME
LIFE ALTERING FOR INDIVIDUALS
AND IF YOU TRULY WANT TO INCLUDE
THEM THROUGH MEDICAL RESEARCH
AND IN YOUR COMMUNITIES AND
BEGIN TO BUILD THIS SPACE, THEN
WE HAVE TO CHANGE THE NARRATIVE
AND CHANGE HOW WE CHOOSE TO
FOCUS ON INDIVIDUALS OF ALL
ABILITIES.
AND SO, I PUT THIS VIDEO IN
SIMPLY BECAUSE I WANTED YOU TO
SEE NOBODY EVER TOLD ME THAT
ELLIOT WOULD BE SINGING WITH
CHRIS JANZEN IN FRONT OF 3500
PEOPLE.
THE POSSIBILITIES ARE ENDLESS
FOR OUR CHILDREN AND ADULTS WITH
DOWN SYNDROME BUT MEDICAL
RESEARCH AND EDUCATIONAL
EQUALITY MATTER DESPERATELY.
AND LINDA, I DID IT.
15 MINUTES.
>> THANK YOU SO MUCH!
WHAT AN IMPORTANT MESSAGE.
BREAKDOWN THE BARRIERS.
CREATE THOSE ADVOCATES AND
CREATE THOSE ALLIES.
SUCH A VERY, VERY IMPORTANT
CONCEPT.
THANK YOU VERY MUCH.
THE NEXT PRESENTATION IS
DR. BRIAN CHICOINE WHO IS THE
CO-FOUNDER AND MEDICAL DIRECTOR
AT THE ADVOCATE MEDICAL GROUP
ADULT DOWN SYNDROME CENTER IN
PARK RIDGE, ILLINOIS.
THE CENTER HAS SERVED OVER 6000
ADOLESCENTS AND ADULTS WITH DOWN
SYNDROME SINCE INCEPTION IN 19
1992.
DR. BRIAN CHICOINE HAS PUBLISHED
MANY ARTICLES REGARDING THE
HEALTH OF PEOPLE WITH DOWN
SYNDROME AND IS A CO-AUTHOR OF
BOOKS ON MENTAL WELLNESS IN
ADULTS WITH DOWN SYNDROME AND A
GUIDE TO GOOD HEALTH IN TEENS
AND ADULTS WITH DOWN SYNDROME.
BRIAN CHICOINE.
>> BRIAN CHICOINE: THANK YOU
VERY MUCH.
I'LL GIVE A PLUG TO KATE.
I WAS INTERVIEWED BY THE RADIO
PROGRAM SEVERAL YEARS AGO.
THEY DO A DELIGHTFUL JOB.
SO THANK YOU, AND FOR THE
TRANSLATORS, I'LL TRY TO SPEAK
SLOWLY.
IT'S NOT ONE OF MY STRONG SUITS.
LIVE I HAVE ASKED PEOPLE TO
THROW THINGS AT ME IF I GET
GOING TOO FAST.
SO IF YOU COULD VIRTUALLY THROW
SOMETHING AT ME, THAT WOULD BE
FINE.
SO, LISTENING TO THE OTHER
PRESENTERS, CLEARLY THERE ARE
FOLKS THAT ARE CLEARLY MORE
QUALIFIED AND HAVE ADDRESSED
THIS BETTER THAN WE HAVE WITH
MORE THOUGHTFUL AND PROACTIVE
PROGRAMS TO TRY TO INCLUDE OR
ENHANCE PARTICIPANT DIVERSITY IN
DOWN SYNDROME CLINICAL RESEARCH
AND MORE SUCCESSFUL THAN WE
HAVE, FRANKLY.
AS I PREPARE FOR THIS AND -- I
HAVE NO MAGIC BULLET.
I'M GOING TO SHARE SOME THOUGHTS
AND SEE WHAT SHAKES OUT AS WE GO
HERE.
NEXT SLIDE.
SO AGAIN AS WAS MENTIONED, WE'RE
A CLINIC THAT OPENED IN 1992 IN
THE CHICAGO SUBURBS AND WE TAKE
CARE OF ADOLESCENTS AND ADULTS
WITH DOWN SYNDROME 12 AND OLDER
AND TRY TO PROVIDE COMPREHENSIVE
COMMUNITY-BASED HEALTH CARE
SERVICES IN THE OFFICE, IN THE
HOSPITAL, LOCAL NURSING HOME FOR
SOME OF OUR OLDER FOLKS AND
GROUP HOME VISITS AS NEEDED.
SO WE SEEN A LOT OF DIFFERENT
PEOPLE OVER THE YEARS AND BUT
THERE IS STILL A CHALLENGE AND
WE'LL TALK ABOUT THAT IN JUST A
SECOND.
NEXT SLIDE.
SO WE SEE INDIVIDUALS 12 AND
OVER LIVE IN ILLINOIS.
WE HAVE THREE FAMILY PHYSICIAN
THAT IS PROVIDE THE CARE.
WE DO PRIMARY CARE AS WELL AS
FOR SOME INDIVIDUALS, DEPENDING
ON HOW FAR THEY HAVE COME MORE
SPECIALTY CARE WHERE THEY HAVE A
FAMILY PHYSICIAN OR A PHYSICIAN
NEAR CLOSER TO HOME AS WELL.
WE ALSO PROVIDE PHYSICAL AND
MENTAL HEALTH CARE IN THE CLINIC
AND IN THE HOSPITAL AND
RESIDENTIAL FACILITIES AND
NURSING HOMES.
NEXT SLIDE.
WE ALSO HAVE OCCUPATIONAL
THERAPIST WITH A PH.D.
DISABILITY STUDIES WHO DOES A
LOT OF WORK IN TRYING TO HELP
REGAIN OR IMPROVE FUNCTION IN
OUR FOLKS IN A VARIETY OF WAYS.
WE HAVE A LICENSED CLINICAL
SOCIALITY WORKER THAT HELPS US
WITH MENTAL HEALTH TREATMENT.
AND THEN WE HAVE A PATIENT
ADVOCATE WHO HELPS FAMILIES AND
PATIENTS GET ADDITIONAL
INFORMATION AS WELL AS SERVICES.
NEXT SLIDE.
SO, THE GOAL IS TO -- LOOKING AT
TRYING TO IMPROVE PARTICIPATION.
SO IN RESEARCH, I THINK THE
FIRST STEP IS TO IMPROVE
PARTICIPATION OF ALL PEOPLE WITH
DOWN SYNDROME.
I THINK THIS IS A CHALLENGE
SOMETIMES, PARTICULARLY IN SOME
OF THE CLINICAL TRIALS WHERE
THERE IS AN INTERVENTION,
FAMILIES CAN BE HESITANT ABOUT
PUTTING THEIR SIBLING OR KIDS
THROUGH A TRIAL AND THAT
INCLUDES MEDICATION PERHAPS OR A
TEST OR WHATEVER THE CASE MAY
BE.
AND SO CERTAINLY THAT IS AN
ISSUE IN AND OF ITSELF.
BUT ALSO PARTICULARLY WHEN I WAS
ASKED TO ADDRESS WAS TO IMPROVE
PARTICIPATION OF PEOPLE THAT ARE
OTHERWISE UNDERREPRESENTED IN
STUDIES.
NEXT SLIDE.
SO AGAIN JUST TO THE DEFINITION
WAS SHARED WITH ME AS I PREPARED
FOR THIS WAS, RACIAL AND ETHNIC
MINORITIES, PEOPLE WITH LOW
SOCIAL ECONOMIC STATUS, PEOPLE
WITH DISABILITIES, OBVIOUSLY
THEY IS 100% OF THE PEOPLE WE
SEE.
AND THEN KATE ADDRESSED PEOPLE
FROM RURAL COMMUNITIES AND OTHER
DISADVANTAGED BACKGROUNDS.
NEXT SLIDE.
KEEP GOING.
WHEN WE STARTED THE CLINIC 30
YEARS AGO, ONE OF THE VERY EARLY
PARENTS THAT I SAW, THE MOM
ASKED ME, ARE YOU DOING
RESEARCH?
AND AT THE TIME THE ANSWER WAS,
NO.
BUT I WAS SURPRISED AT HER
RESPONSE WHEN I SAID, NO.
HER RESPONSE WAS, GOOD.
WELL, THAT'S AN INTERESTING
RESPONSE TO THAT.
IN AN AREA WHERE THERE IS A
GREAT LACK OF INFORMATION.
AND SHE TOLD ME A STORY.
SHE HAD BEEN TO ANOTHER SITE IN
ANOTHER PLACE AND THEY HAD DONE
EIGHT HOURS OF RESEARCH FOR THE
INDIVIDUAL AND/OR ON THE
INDIVIDUAL, AND WITH DOWN
SYNDROME, AND THEN AT THE END,
THEY GAVE HER A REPORT OF THE
FINDINGS AND A LIST OF THINGS
THEY RECOMMENDED BE DONE.
AND THE MOM ASKED, ARE YOU GOING
TO PROVIDE THOSE MEDICAL
SERVICES?
AND THEY SAID, NO.
THIS LOCATION SAID NO.
AND THEN THEY SAID, THE -- THE
MOM ASKED, DO YOU HAVE ANY
REFERRALS FOR US TO GET THIS
SERVICES?
AND THE ANSWER WAS NO TO THAT AS
WELL.
AND SO, THIS MOM HER TAKE ON
THIS, AND I HEARD THIS FROM LOTS
OF FOLKS OVER THE YEARS -- I'M
JUST TRYING TO GET BASIC HEALTH
CARE.
I DON'T HAVE TIME TO DO RESEARCH
OR PARTICIPATE IN RESEARCH.
SO REALLY WHAT WE HAVE FOUND
WITH THE FAMILIES THAT ARE
PRIMARILY LOOKING FOR IS HELP
WITH THE HEALTH ISSUES, PHYSICAL
AND MENTAL HEALTH ISSUES AS WELL
AS OPTIMIZING HEALTH PROMOTION
AND THEN RESEARCH CAN FOLLOW
SUIT AFTER GETTING THOSE
SERVICES.
NEXT SLIDE.
SO THERE WAS A STUDY DONE
RECENTLY THAT ESTIMATED LESS
THAN 5% OF ADULTS WITH DOWN
SYNDROME HAVE ACCESS TO A DOWN
SYNDROME SPECIALTY CLINIC.
SO, THE OTHER 95% IS OUT IN THE
COMMUNITY.
SOME GETTING GOOD CARE FROM
THEIR LOCAL PHYSICIAN AND SOME
STRUGGLING TO FIND ANSWERS TO
SOME OF THE CHALLENGES THEY ARE
FACING.
NEXT SLIDE.
IN THIS -- STEPHANIE DID THIS
STUDY.
SO IF YOU SHARED THIS ALREADY,
FORGIVE ME.
BUT IN THE STUDY THAT WAS DONE,
THEY LOOKED AT 14 OF THE 25
POINTS IN THE UNITED STATES, 25
LISTED ON LINE AND 25 RESPONDED
TO SURVEY.
OF THE 14 CLINICS, ONLY 3%
POTENTIALLY HAVE THE ADULTS WITH
DOWN SYNDROME COULD BE SERVED
AND IF YOU INCLUDED ALL 25,
ABOUT 5%.
SO AGAIN, A SIGNIFICANT
SHORTCOMING OF SERVICES FOR
THOSE OTHER 95-97%.
NEXT SLIDE.
SO, IT'S BEEN OUR EXPERIENCE, WE
ARE PARTICIPATING IN THE DSR
STUDY AND WE HAVE ENROLLED 56
PARTICIPANTS.
AND WE ONLY SEE 2000 INDIVIDUALS
WITH DOWN SYNDROME.
SO EVEN IN A PLACE THAT IS
PROVIDING SOME SIGNIFICANT
SERVICES, REALLY ONLY ABOUT 3%
OF OUR PATIENTS ARE
PARTICIPATING.
SO, EVEN WHEN PROVIDING
SERVICES, THERE IS GOING TO BE A
SIGNIFICANT NUMBER OF
INDIVIDUALS THAT DON'T
PARTICIPATE.
AND THIS STUDY DOES NOT HAVE ANY
INTERVENTION.
IT'S INFORMATION GATHERING IF
YOU WILL.
THERE IS NEUROSIGHT TESTING AND
EXAMS.
SO OUR PRIMARY FOCUS OF THIS
STUDY.
WE ARE ACTUALLY AGAIN THE
INTERESTING THING IS WE ARE
ABOUT 25% OF THE TOTAL ENROLLEES
IN THE 12 SITE STUDY.
AGAIN, WE DO HAVE THE ADVANTAGE
WE SERVE LOTS OF FOLKS AND
THEREFORE EVEN THOUGH OUR
PERCENTAGE IS ONLY 3% OF OUR
PATIENTS, IT STILL IS A
SIGNIFICANT NUMBER OF PEOPLE.
UNFORTUNATELY, WE DO HAVE SOME
BUT WE ARE STILL NOT DOING A
VERY GOOD JOB WITH ETHNIC AND
RACIAL DIVERSITY IN THE STUDY.
AND THAT REALLY IS REFLECTIVE OF
OUR PATIENT POPULATION AND
THEMING THE OTHER PIECE, WE ARE
LOOKING AT IS, WHEN TRYING TO
ADDRESS THE NEEDS OF SOMEONE
WITH DISABILITIES, IN STUDIES,
WE ARE TRYING TO PROVIDE
INFORMATION PRIOR TO THE CONSENT
SO THE FAMILY AND THE INDIVIDUAL
WITH DOWN SYNDROME CAN TAKE A
LOOK AT THAT AHEAD OF TIME.
AND THEN WE DEVELOPED A VISUAL
AID VIDEO FOR THE PERSON WITH
DOWN SYNDROME TO EXPLAIN THE
STUDY.
AGAIN JUST TRYING TO INCLUDE THE
PERSON WITH DOWN SYNDROME AS
MUCH AS POSSIBLE IN THE STUDY.
AND MAKE THEM AWARE OF WHAT WAS
HAPPENING.
NEXT SLIDE.
SO, IT'S NOT SPECIFICALLY FOR
THE PURPOSE OF RESEARCH,
ALTHOUGH I'M HOPING THAT WILL BE
A SECONDARY GAIN.
WE ARE REALLY -- I HAVE BEEN
LOOKING AT THIS FOR A LONG TIME
AND HOW TO INCREASE THE
DIVERSITY OF OUR PATIENT
POPULATION, WHICH IS
PREDOMINANTLY WHITE.
I THINK FIRST OFFS FOR US THE
FIRST STEP IS TRYING TO BE AWARE
THAT THIS IS AN ISSUE.
WE ARE REALLY TRYING TO ADDRESS
HEALTH EQUITY ISSUES.
TRYING TO MAKE SURE THAT NOT
ONLY FOR THE HEALTH EQUITY
ISSUES FOR DOWN SYNDROME BUT
ACROSS OTHER RACIAL AND ETHNIC
GROUPS THAT THOSE ISSUES ARE
BEING ADDRESSED.
WE ARE PART OF A LARGE HEALTH
CARE SYSTEM THAT COVERS -UE CAN
SEE THE WHITE DOTS ON THE MAP
THERE.
THOSE ARE ALL ADVOCATE AURORA
SITES.
SO YOU CAN SEE THAT THERE IS A
WIDE VARIETY OF SITES.
SO HOW ARE THE SERVICES BEING
OBTAINED AND HOW CAN WE HELP
PARTICIPATE IN THAT?
TELEHEALTH -- I NEVER DID A
TELEHEALTH VISIT BEFORE MARCH OF
2000 WHEN COVID HIT.
BUT THAT'S BEEN A HUGE BENEFIT.
I DO SEE A LOT OF FOLKS, KATE
FROM RURAL ILLINOIS, AND I'M
ABLE TO SEE THEM WHEN THEY COME
3-4 HOURS OR MORE FOR OUR
APPOINTMENT AND NOW I'M ABLE TO
SEE THEM MORE FREQUENTLY VIA
TELEHEALTH, WHICH HAS BEEN A
HUGE ACCESS ISSUE, BENEFICIAL
ACCESS ISSUE FOR PEOPLE TO COME
FROM A RURAL AREA.
AGAIN WITH AURORA HEALTH, WIDE
DISTRIBUTION SO TRYING TO REACH
OUT TO OUR HEALTH SYSTEM AND
MAKE SURE THAT PEOPLE ARE AWARE
OF OUR SERVICES SO THAT WE CAN
GET PEOPLE WITH -UE CAN SEE THAT
AURORA IS TRADITIONALLY IN
WISCONSIN AND THAT SERVES
MILWAUKEE WHICH HAS A LARGE
INNER CITY PRESENCE AS WELL AS
INNER CITY CHICAGO PRESENCE.
SO TRYING TO REACH OUT TO THOSE
PROVIDERS IN THOSE AREAS AND
MAKE THEM AWARE OF OUR SERVICES
TO TRY TO IMPROVE OUR ACCESS TO
INDIVIDUALS THAT ARE NOT GETTING
INTO OUR CLINIC AT THE MOMENT.
ALSO LOOKING AT POSSIBILITIES OF
TAKING THE SHOW ON THE ROAD AT
TIMES.
WE ARE LOOKING INTO THAT, TAKE
IT INTO CHICAGO OR MILWAUKEE AND
NEIGHBORHOODS WHERE WE ARE NOT
GETTING THE INDIVIDUALS WITH
DOWN SYNDROME INTO OUR OFFICE
AND CAN WE GET OR REACH OUT TO
THEM WHETHER IT IS
TRANSPORTATION OR OTHER ISSUE
BEES THAT ARE NOT ALLOWING THEM
TO GET TO OUR CLINIC.
I'VE ALSO REACHED OUTPLACES OF
WORSHIP IN THE CITY, RELIGIOUS
ORGANIZATIONS AND OTHER WAYS TO
CONNECT WITH THEM AND CONNECT
WITH INDIVIDUALS WITH DOWN
SYNDROME THAT ARE NOT GETTING
SERVICE.
AND AGAIN, I HAVE NO MAGIC
BULLETS.
I'M NOT GOING TO SAY WE HAD
RESOUNDING SUCCESS WITH ANY OF
THIS BUT THINGS ARE CONTINUING
TO TRY AND WORK.
AND THEN THE PREVIOUS SESSION
HAD MENTIONED SPECIAL OLYMPICS.
HI SOME CONVERSATIONS WITH THE
SPECIAL OLYMPICS FOLKS.
ADVOCATE HAS BEEN INVOLVED IN
THE MED FEST PROGRAM THAT DOES
PHYSICALS.
I HAVE GONE DOWN TO THE UNITED
CENTER WHERE THE HAWKS --
BLACKHAWKS AND BULLS PLAY AND
MED FEST THING IS EVERY YEAR, TO
DO THESE SPECIAL OLYMPICS
PHYSICALS.
AND MANY OF THOSE PARTICIPANTS
COME FROM INNER CITY AND CHICAGO
AND ARE THERE WAYS WE CAN
FOLLOW-UP WITH THEM AND REACH
OUT TO THEM AND PROVIDERS.
LOOKING AT WAYS TO INCLUDE THEM
IN HEALTH CARE.
AND THEN MY HOPE THEN IS AGAIN
AS A SECONDARY GAIN, WOULD BE
HOPEFULLY WE CAN GET MORE PEOPLE
PARTICIPATING IN RESEARCH AS
WELL.
NEXT SLIDE.
>> DR., BRIAN CHICOINE JUST A
MESSAGE TO SLOW DOWN A LITTLE
BIT WITH THE INTERPRETER.
THEY ARE TRYING TO CATCH-UP.
THANK YOU VERY MUCH.
>> THANK YOU FOR THROWING
SOMETHING.
SO, AGAIN WE ARE LOOKING AT
OTHER WAYS TO SERVE THE
POPULATION.
WE HAVE AN ONLINE RESOURCE
LIBRARY.
WE HAVE AN EDUCATIONAL PROJECT
WITH LU MIND-IDSC.
DR. SCOTT GO, THE DOWN SYNDROME
CLINIC TO YOU.
ANOTHER WAY TO REACH OUT TO
FAMILIES THAT MAY NOT BE GETTING
TO CLINICS.
GLOBAL DS FOUNDATION HAS A
NUMBER OF PROJECTS THEY ARE
WORKING ON TO TRY TO SERVE MORE
PEOPLE, INCLUDING THE HEALTH
CARE AND BENEFIT OF
PARTICIPATING IN.
AND AS A MEMBER OF THE DOWN
SYNDROME MEDICAL INTEREST GROUP,
A NUMBER OF THINGS WE ARE
WORKING ON AND HOPING TO SHARE
WITH YOU IN THE COMING MONTHS
THAT WE ARE WORKING ON TO TRY TO
SUPPORT PROVIDERS ACROSS THE
COUNTRY WHO ARE 95% THAT THEIR
PATIENTS DON'T HAVE ACCESS.
AND HOPEFULLY AS WE EXPAND CARE
OF THESE INDIVIDUALS, THE
RESEARCH WILL FOLLOW AS I
MENTIONED.
NEXT SLIDE.
AND THAT'S IT.
I THINK I WAS EVEN WITHIN MY
TIMEFRAME.
>> THANK YOU.
IT WAS VERY IMPORTANT MESSAGE
AND THE EFFORTS TO INCREASE THE
DIVERSITY OF INDIVIDUALS COMING
TO YOUR CLINIC OR PART OF ANY
RESEARCH PROJECTS, JUST DON'T
HAPPEN ON THEIR OWN.
HAVE TO BE AWARE OF IT.
YOU HAVE TO THINK THROUGH WAYS
TO REALLY REACH THE VERY, VERY
BROAD POPULATION AMONG ALL
ETHNIC GROUPS.
SO THANK YOU VERY MUCH.
VERY, VERY INTERESTING
PRESENTATION.
NEXT PRESENTATION WILL BE BY
DR. ELENA GRIGORENKO WHO
CURRENTLY, I BELIEVE IS AT THE
UNIVERSITY OF HOUSTON.
SHE HAS MULTIPLE DOCTORAL
DEGREES AND HAS PUBLISHED MORE
THAN 500 PEER-REVIEWED ARTICLES,
BOOK CHAPTERS AND RECEIVED
MULTIPLE PROFESSIONAL AWARDS FOR
HER WORK ALL AROUND THE GLOBE.
I DON'T BELIEVE THAT DR. ELENA
GRIGORENKO IS GOING TO BE ABLE
TO STAY AROUND FOR THE QUESTION
AND ANSWER SO DR. PHIL THUMA, A
COLLEAGUE, AND IS A SENIOR
SCIENTIFIC ADVISOR AT THE MOCKA
RESEARCH TRUST AND AUTHOR AND
CO-AUTHOR OF MORE THAN 100
PUBLICATIONS AND SCIENTIFIC
JOURNALS, WILL BE AVAILABLE TO
ANSWER ANY QUESTIONS FROM
PARTICIPANTS.
PLEASE, DR. ELENA GRIGORENKO.
>> ELENA GRIGORENKO: THANK YOU
VERY MUCH.
REALLY APPRECIATE THE
INTRODUCTION AND I HOPE THAT YOU
CAN HEAR ME AND YOU CAN SEE ME,
RIGHT?
THANK YOU.
SO I WOULD ALSO LIKE TO
INTRODUCE SOME OTHER MEMBERS OF
OUR TEAM.
DR. TAN IS AROUND AS WELL AND
SHE COMMENTED TO ME THAT IT'S
BEEN A FASCINATING AFTERNOON.
I APOLOGIZE.
I'M IN A DIFFERENT MEETING AND I
WAS THERE ALL DAY YESTERDAY AND
ALSO I FOUND THAT MEETING VERY
INTERESTING.
SO THANK YOU VERY MUCH FOR THIS.
SO I WILL TAKE YOU ON A TRIP TO
RUSSIA.
WE HAVE BEEN FORTUNATE TO ENJOY
GREAT SUPPORT FROM NIH FOR A
NUMBER OF YEARS.
WE HAVE FOCUSED ON DEVELOPMENTAL
DISABILITIES PARTICULARLY THE
STUDY I WILL BE TALKING ABOUT
TODAY IS A STUDY OF LEARNING
DISABILITIES.
WE ALSO WORK WITH HIV/AIDS OVER
ANS AND NOW WE -- ORPHANS AND
NOW WE ARE GOING TO START
WORKING WITH CHILDREN WITH
INTELLECTUAL DISABILITIES.
NEXT SLIDE, PLEASE.
SO, AS WE PREPARE FOR THIS
CONVERSATION, WE OF COURSE HAVE
DONE SOME RESEARCH LOOKING AT
WHAT IS KNOWN ABOUT DOWN
SYNDROME IN AFRICA.
AND VERY SUGGESTS KNOWN.
THERE ARE SOME STUDIES,
PRIMARILY IN SOUTH AFRICA BUT
REALLY THERE IS FEW PUBLICAT
PUBLICATIONS.
NO TRUE WORK AND NO TRUE
LARGE-SCALE EFFORTS.
WHAT IS KNOWN SUGGESTS THAT
THERE IS NO REASON TO BELIEF
THAT THE PREVALENCE OF DOWN
SYNDROME IS DIFFERENT FROM THAT
WORLDWIDE.
SO IT APPEARS TO APPROXIMATELY
ONE-700 BUT AGAIN, WE JUST DON'T
HAVE ENOUGH DATA, RELIABLE DATA,
TO LOOK AT THIS.
SO, WHAT I'M TRYING TO DO TODAY
IS TO COMMENT BRIEFLY ON OUR
EXPERIENCE WORKING AT THIS
TRUST, WHICH IS IN PART
ESTABLISHED A LAB BY DR.
[ INAUDIBLE ]
AND WHAT IT HAS BEEN SO
WELCOMING AND REMARKABLY
PRODUCTIVE FORURS TO WORK THERE.
IT'S AN OVERSTATEMENT OF COURSE
BUT I WOULD LIKE TO SAY THAT IN
THIS ENVIRONMENT, WE SHOULD BE
ABLE TO DO REASONABLY WELL
DESIGNED, REASONABLY WELL
PERFORMED, A STUDY OF DOWN
SYNDROME IN AFRICA.
PLEASE ADVANCE THE SLIDES.
THE POINT OF TODAY IS TO SHARE
WITH YOU SOME OF THE MAJOR
PRINCIPLES OF ENGAGEMENT WITH
EXERCISE AND TO SHOW YOU BITS
AND PIECES OF OUR DATA THAT
INDICATE OUR -- THE FIRST
OBSERVATION IS WORKING IN
LOW-INCOME COUNTRIES IS REALLY
AN EXCITING AND HIGHLY REWARDING
CHALLENGE BUT IT IS CHALLENGING.
AND QUITE A FEW REASONS AND
EXPLANATIONS FOR WHY IT IS A
CHALLENGE.
NEXT SLIDE.
THE STUDIES THAT GAVE US SOME
INFORMATION TO PRESENT TODAY
ACTUALLY ENGAGED 36 SCHOOLS AND
ABOUT SLIGHTLY OVER 4.5000 KIDS,
ALL IN THE RURAL AREA OF THE
TRUST.
SO AS WE WERE FOCUSING ON
LEARNING DISABILITIES IN GENERAL
AND READING DISABILITIES IN
PARTICULAR, WE HAD A LARGE-SCALE
SCREENING EFFORT THAT IDENTIFIED
THOSE WEAKNESSES AND THEN WE
HAVE A SET OF INCLUSION
CRITERIA.
OUR INCLUSION CRITERIA, AND THIS
IS IMPORTANT, HAD TO INCLUDE
EITHER
25 INDICATORS OF HIGH-LEVEL
PERFORMANCE IN THIS
READING-RELATED TASKS, OR THE
BOTTOM INDICATORS OF THIS 25
INDICATORS FOR LOWER-PERCENT
RATE.
OUR EXCLUSION CRITERIA WERE
FOCUSED ON IQ, BMI AND HEARING
AND VISUAL CAPACITIES.
WE EXCLUDED KIDS WITH VISUAL
PROBLEMS.
THE HEARING ISSUES WORKED OUT
BUT I'M NOT GOING TO FOCUS ON
THOSE ISSUES.
SO, AT THE END OF THIS SCREENING
EXERCISE, WE GENERATED TWO
GROUPS OF CHILDREN WITH AND
WITHOUT SPECIFIC READING
DISABILITIES.
AND THEN, WE SUBJECTED THESE
KIDS TO A REALLY LONG ASSESSMENT
BATTERY.
SO
THIS IS OUR SAMPLE
.
HALF AND HALF DISTRIBUTION.
AND WE DID INTEND TO ENROLL
6-YEAR-OLD OR A 20-YEAR-OLD BUT
THAT'S WHAT YOU FIND IN RURAL
AFRICA WHEN YOU ARE ENROLLING
GRADES.
BECAUSE THERE IS NO PERFECT
CORRELATION BETWEEN AGES AND
GRADES IN AFRICA.
NEXT SLIDE, PLEASE.
SO I HOPE YOU AGREE WITH ME THIS
IS A SAMPLE OF RESPECTFUL
STATUS.
AND WE, IN OUR CLOSE CORPORATION
WITH PHIL AND HIS COLLEAGUES IN
RUSSIA, BEGIN RESEARCH PROJECTS
AND THIS IS OUR THIRD PROJECT IN
THAT LOCATION BY SETTING UP
MEETINGS WITH REGIONAL CHIEFS
AND WE SECURE THEIR PERMISSION
TO WORK IN THEIR AREAS.
NEXT SLIDE, PLEASE.
THE NEXT THING WE DO IS LOOK
AROUND AND FIND MEMBERS OF LOCAL
COMMUNITY WHO ARE INTERESTED IN
WORKING WITH US.
AND THESE MEMBERS ARE RECOGNIZED
AND TRUSTED IN SURROUNDING
VILLAGES AND THEY BENEFIT.
SOME OF THEM WORKED WITH US FOR
YEARS AND HAVE BEEN IN
CONTINUOUS TRAINING WITH
SUPPORTING THEIR MASTER'S
DEGREES AND PH.D.s AND MANY OF
THEM RETURNED TO THEIR
COMMUNITIES.
THIS COMMUNITY AND SOME OTHER
COMMUNITIES.
WE GO TO OUR PARTICIPANTS
WHEREVER IT IS CONVENIENT AND
APPROPRIATE FOR THEM.
AND THIS IS A MOTHER, THE
TARGETED CHILD IS AT SCHOOL BUT
SHE HAS ANOTHER LITTLE BOY WHO
TRAVELS WITH HER TO OUR
ASSESSMENT SESSIONS.
NEXT SLIDE, PLEASE.
WE USED OUR FRIENDLY CONSULT
READOPTED ASSESSMENTS.
WE WORK HARD ON THAT.
WE ARE WELL CONNECTED IN THE
COMMUNITY THAT WE WORK IN IN
AFRICA.
WE ARE SENSITIVE TO ALL KINDS OF
ISSUES PERTAINING TO
PSYCHOMETRICS OF THESE
ASSESSMENTS AND WE WORK VERY,
VERY HARD TO MAKE SURE THAT WE
KNOW WHAT WE'RE USING WHEN WE'RE
USING THESE INSTRUMENTS WITH OUR
KIDS.
NEXT SLIDE, PLEASE.
SO, THIS IS A RESULT OF OUR
SCREENING.
THIS IS FOR THE WHOLE SAMPLE.
YOU CAN SEE THAT IT'S
DISTRIBUTED.
THERE ARE SOME DEVIATIONS HERE
BUT THE INSTRUMENTS SEEM TO BE
WORKING AS INTENDED.
NEXT SLIDE, PLEASE.
SO WE WORK IN AREAS WHERE MOST
OF THE FAMILIES ARE -- WHERE
FAMILY BUDGETS ARE VERY LIMITED
TO SAY THE LEAST.
AND WE RESPECT THESE
LIMITATIONS.
WE ARE ON THE SAME LEVEL WITH
THESE FAMILIES.
WE HELP WHEN WE CAN.
BUT WE APPRECIATE THEIR HARD
EFFORTS TO SUPPORT THEIR
FAMILIES.
AND TO CULTIVATE THEIR BEAUTIFUL
LAND TOO.
NEXT SLIDE, PLEASE.
BUT, IF YOU LOOK AT THE
DISTRIBUTION, YOU CAN SEE THAT
POVERTY IS THERE.
IT'S PRESSING.
SO MOST OF THE KIDS ARE
UNDERNOURISHED.
NEXT SLIDE, PLEASE.
AND THIS IS THEIR HEAD
CIRCUMVENT FRANCE DATA.
-- CIRCUMFERENCE DATA.
AND NUTRITIONAL DEFICITS ARE
REAL THERE AS WELL.
NEXT SLIDE, PLEASE.
SO, GOING BACK TO THIS STUDY, I
WOULD LIKE TO REVISIT THE
EXCLUSION CRITERIA.
BY DEFINITION, WE EXCLUDED
CHILDREN WITH LOWER IQ.
WE WENT FROM 44500 CHILDREN AND
BECAUSE OF THE SPECIFICS OF THE
CHILDREN WE ARE LIKELY TO HAVE
EXCLUDED CHILDREN WITH
INTELLECTUAL DISABILITIES AND WE
ARE NOW BACK FOR THAT.
WE WANT TO WORK WITH THESE
CHILDREN IN A VERY TARGETED,
VERY PURPOSEFUL MANNER.
SO THE STUDY ASPECTS I'M GOING
TO FOCUS ON FOR THE NEXT FIVE
MINUTES OR SO ARE COMPLEX.
AND WE TAKE TIME AND EFFORT TO
EXPLAIN OUR RESEARCH REGARDLESS
OF OF THE COMPLEXITY.
AND THAT'S ONE OF THE PICTURES
OF THE INTERACTIONS BETWEEN THE
RESEARCH TRUST PERSONNEL WITH
THE LOCAL COMMUNITY.
NEXT SLIDE, PLEASE.
SO, WE HAVE MANAGED TO SECURE
GENETIC MATERIAL AT VERY FEW
REFUSALS.
WE STILL HAVE ONE OF THE LARGEST
SAMPLES KNOWN TO US, AT LEAST,
FROM THIS AREA.
NEXT SLIDE, PLEASE.
SO, AGAIN, BECAUSE WE EXCLUDED
INDIVIDUALS WITH INTELLECTUAL
DISABILITIES, OUR DISTRIBUTION
IS SHIFTING.
SO OUR GENOTYPE SAMPLE HAS
HIGHER IQ THAN OUR TOTAL SAMPLE.
NEXT SLIDE, PLEASE.
WE ARE ALWAYS GRATEFUL TO OUR
PARTICIPANTS ENGAGED IN RESEARCH
AND HERE YOU SEE WE ACTUALLY
HAVE IN THE PREVIOUS STUDY WE
WORKED WITH AMERICAN KIDS, HIGH
SCHOOL STUDENTS, FOR THEM TO GO
THROUGH ACTIONS TO GENERATE TO
BRING MANY, MANY SOCCER BALLS
BACK TO AFRICA AND THIS IS A
LETTER ADDRESSED TO THE PROJECT
DIRECTOR DR. GOREDY, THAT IS WHY
YOU SEE HER FIRST NAME THERE.
NEXT SLIDE, PLEASE.
SO OUT OF THESE GENOTYPED
INDIVIDUALS FOR THOSE WHO ARE
INTERESTED IN GENETICS, WE SEE A
LOT OF VARIATION IN SAMPLES.
THIS IS A GRAPH THAT SHOWS A
NUMBER OF VARIANTS IN A SAMPLE.
ALL THE 1300 INDIVIDUALS WE
LOOKED AT.
NEXT SLIDE, PLEASE.
SO THIS IS A REPRESENTATION OF
TYPES OF FINDINGS AND THEIR
RANGE.
SO THERE ARE SMALL ONES, BIG
ONES AND THERE ARE DELETIONS.
HOMOZYGOUS AND HETEROZYGOUS --
NEXT SLIDE, PLEASE.
THIS IS A VISUAL REPRESENTATION
OF DISTRIBUTIONS.
THE GRAY WOULD SHOW NORMAL
GENOTYPE BUT YOU SEE MULTIPLE
DUPLICATIONS.
DELETIONS ARE SHOWN IN PINK AND
GREEN AND DUPLICATIONS ARE SHOWN
IN ORANGE AND BLUE.
NEXT SLIDE, PLEASE.
THIS IS DISTRIBUTED THROUGH THE
GENOME.
YOU SEE MOST OF THEM ARE FAIRLY
SHORT BUT THERE ARE SOME LONG AS
WELL.
NEXT SLIDE, PLEASE.
THIS IS AN IMPORTANT SLIDE
BECAUSE IT SUMMARIZES ALL OF THE
FINDINGS ON THE HUMAN GENOME.
NEXT SLIDE, PLEASE.
AND WE DID NOT SEE IN THIS
SAMPLE, AGAIN INDIVIDUALS WITH
INTELLECTUAL DISABILITY WERE
EXCLUDED IN INDIVIDUALS WITH
DOWN SYNDROME.
AND THINKING ABOUT THE FREQUENCY
OF DOWN SYNDROME, WE DID NOT
ANTICIPATE.
THAT'S HOW INDIVIDUALS WITH DOWN
SYNDROME WOULD HAVE LOOKED IN
TERMS OF -- NEXT SLIDE, PLEASE.
SO, YOU CAN SEE THERE IS A LOT
GOING ON IN THESE GENOMES.
NEXT SLIDE, PLEASE.
AND CHROMOSOME 15 ARE MANY
DEVELOPMENTAL SYNDROMES KNOWN
THROUGH VARIOUS REGISTRIES BUT
WE DID NOT SEE ANY OF THIS IN
THAT SAMPLE.
OF COURSE THE SAMPLE WAS
SELECTED FOR PARTICULAR
PHENOTYPES.
NEXT SLIDE, PLEASE.
SO WE REGISTERED SOME PATHOGENIC
REGIONS, DIFFERENT SIZES AND
DIFFERENT LOCATIONS.
THIS DATE ADD COMPARABLE DATA,
NOT EASILY AVAILABLE SO WE THINK
THAT THIS IS WHAT WE WILL
CONTRIBUTE TO THE LITERATURE
SIMPLY BY CAPTURING THE
DIVERSITY.
NEXT SLIDE, PLEASE.
WE HAVE ALSO INVESTIGATED SOME
POPULATION DYNAMICS IN THIS
POPULATION.
SO WE SEE TWO DIFFERENT
GROUPINGS IN THIS SAMPLE OF
CHILDREN AND SOME ARE MORE LOCAL
AND MORE RELATED TO EACH OTHER.
AND SOME PROBABLY REFLECT AN
ONGOING IN COMING MIGRATION.
SO WHAT I WAS TRYING TO SAY IS,
WE HAVE LEARNED BOTH FROM WORK
IN THIS AND OTHER LOCATIONS IN
AFRICA AND ELSEWHERE IN ASIA,
THAT THESE POPULATIONS ISSUE
VERY INTERESTING SIZE.
WE KNOW VERY LITTLE ABOUT THEM
BUT WE NEED TO REALLY WORK WITH
THEM IN A VERY RESPECTFUL AND
CONSIDERATE STYLE.
AND THAT ALLOWS US TO COME BACK
AND TO EXPLAIN CONTINUE WITH OUR
COOPERATION IN ORDER TO SERVE
AND SUPPORT.
AND I JUST LOVE THAT PICTURE ON
THE LEFT.
RIGHT FROM THERE AND CAPTURES A
LOT.
NEXT SLIDE, PLEASE.
SO TO SUMMARIZE EVERY SINGLE
POINT I MENTIONED, WE THINK IT'S
HIGHLIGHTY IMPORTANT IN THIS
RURAL COMMUNITY TO SECURE ACCESS
TO PARTICIPANTS, ENGAGE THE
COMMUNITY BY RECRUITING LOCAL
PROJECTS.
THEY ARE ALSO GREAT IN
ADVERTISEMENT AGENTS.
ACCOMMODATE THE PARTICIPANTS AS
MUCH AS POSSIBLE.
USE ASSESSMENTS THAT ARE
CULTURALLY SENSITIVE, WELL
COLLABORATED AND CHILD FRIENDLY.
--
[ READING ]
AND THAT BRINGS ME TO MY LAST
SLIDE, PLEASE.
WHICH CAPTURES OUR -- WHICH
MEANS NOW WE WANT TO THINK A
THOUGHT AND WRITE THE WORD AND
WE WANT TO WORK FOCUSING WITH
INDIVIDUALS WITH DISABILITIES
WHILE SAMPLING THEM.
AND NO STATISTICS NOW BUT IN
OTHERS IT'S BEEN SHOWN THAT THE
FREQUENCY OF DOWN SYNDROME
INDIVIDUALS WITH INDIVIDUALS
WITH INTELLECTUAL DISABILITIES
IS BETWEEN 15 AND 17%.
WE THINK WE WILL HAVE A LARGE,
VERY IMPORTANT, INFORMATIVE
SAMPLE OF INDIVIDUALS WITH DOWN
SYNDROME IN THIS POPULATION.
THANK YOU FOR YOUR ATTENTION.
>> THANK YOU VERY MUCH,
DR. ELENA GRIGORENKO.
I'M REALLY FOCUSED ON THE LAST
BULLET ON YOUR SLIDE.
NET A WAY THAT MAKES RETURN
POSSIBLE -- EXIT IN A THEY MAKES
RETURN POSSIBLE.
IT IS TREATING PARTICIPANTS, OUR
PARTNERS, NOT JUST HUMAN
SUBJECTS.
AND JUST VERY IMPORTANT MESSAGES
TO REALLY BE SUCCESSFUL AND TO
CLOSE THAT LOOP SO THAT THE
INDIVIDUALS THAT YOU KNOW,
VOLUNTEER TO BE PART OF IT AND
UNDERSTAND WHY AND GET SOME
DIRECT BENEFITS FROM THE
INVESTIGATORS.
VERY, VERY IMPORTANT.
THANK YOU AGAIN.
OUR LAST PRESENTATION IS FROM
DR. NOEMI SPINAZZI WHO IS A
PRIMARY CARE PHYSICIAN AND
ASSISTANT PROFESSOR OF
PEDIATRICS AT THE UNIVERSITY OF
CALIFORNIA, SAN FRANCISCO
CHILDREN'S HOSPITAL IN OAKLAND.
SHE HAS A SPECIAL INTEREST IN
CHILDREN WITH COMPLEX CARE NEEDS
AND DEVELOPMENT DISABILITIES.
AND SHE FOUNDED A SPECIALIZED
CLINIC SERVING PATIENTS WITH
TRISOMY 21.
FUN FACT, DR. NOEMI SPINAZZI WAS
AWARDED THE UNIVERSITY OF
CALIFORNIA SAN FRANCISCO
CHANCELLOR'S DIVERSITY AWARD AND
DISABILITY SERVICE IN 2022.
CONGRATULATIONS FOR THAT AWARD.
DR. NOEMI SPINAZZI.
>> NOEMI SPINAZZI: THANK YOU SO
MUCH.
CAN YOU HEAR ME OKAY?
>> YES, WE CAN.
>> GREAT.
I WILL WORK VERY HARD TO SLOW
MYSELF DOWN FOR THE
INTERPRETERS.
I'M ITALIAN.
I SPEAK PASSIONATELY AND FAST.
PLEASE STEP IN AND SLOW ME DOWN
IF I'M GOING TOO FAST.
NEXT SLIDE, PLEASE.
WE ARE TALKING TODAY ABOUT
BUILDING A DIVERSE RESEARCH
COMMUNITY AND THROUGHOUT THE
PAST 2 DAYS, WE HAVE HEARD THE
CONCEPT OF TRUST.
AND I WANT TO SUGGEST THAT THERE
ISN'T JUST TRUST THAT WE HAVE TO
GAIN.
THERE IS MISTRUST THAT WE HAVE
TO ACTIVELY UNDO, JUST LIKE IT'S
NOT ENOUGH TO NOT BE RACIST.
WE HAVE TO BE ACTIVELY
ANTI-RACIST TO MAKE ANY
MEANINGFUL CHANGE IN OUR
STRUCTURALLY RACIST SOCIETY.
MISTRUST SIGNIFIES THAT THERE IS
SUSPICION, THAT THERE IS AN
ELEMENT OFIL WILL AT PLAY,
RIGHT?
WHERE MIGHT THIS COME FROM IN
THE CONTEXT OF RESEARCH AND
BUILDING A DIVERSE RESEARCH
COMMUNITY?
WELL OF COURSE IT COMES IN PART,
FROM HISTORICAL TRAUMA.
THERE ARE LEGACIES OF ABUSE AND
MISTREATMENT IN RESEARCH.
MANY OF US LEARN ABOUT THE TUS
KEYINGY SYPHILIS STUDY AND HOW
AFRICAN-AMERICAN PATIENTS WERE
WILLFULLY KEPT FROM RECEIVING
LIFE-SAVING TREATMENT FOR THE
PURPOSE OF A RESEARCH STUDY.
WE ARE TALKING ABOUT A
DISABILITY COMMUNITY THAT WAS
FORCED INTO EXPERIMENTATION
THROUGHOUT HISTORY THAT WAS
FORCEFULLY STERILIZED WITHOUT
CONSENT.
THERE IS A LOT OF HISTORICAL
TRAUMA THAT WE HAVE TO
ACKNOWLEDGE, OWN AND ACTIVELY
UNDO IF WE TRULY WANT TO BUILD A
DIVERSE RESEARCH COMMUNITY.
BUT THERE IS ANOTHER
EVIDENCE-BASED PIECE OF THIS
DISTRUST THAT IS THAT ONGOING
SOCIAL AND ECONOMIC IN
EQUALITIES AND STRUCTURAL RACISM
THAT SHAPE AND SUSTAIN THIS
MISTRUST.
AND THIS IS MAGNIFIED FOR
POPULATIONS TO EXPERIENCE
STAGGERING HEALTH DISPARITIES.
NEXT SLIDE.
LET ME TELL YOU ABOUT WHERE I
LIVE AND WORK.
I LIVE AND WORK IN OAKLAND,
CALIFORNIA.
NOT THE BAY AREA, NOT SAN
FRANCISCO.
I LIVE AND WORK IN OAKLAND AND
I'M VERY PROUD OF IT.
LET'S LOOK AT OAKLAND.
I DON'T HAVE A LITTLE POINTER TO
SHOW YOU BUT IF YOU LOOK AROUND
OAKLAND -- WHERE I WORK, YOU CAN
SEE THAT THERE ARE AREAS THAT
ARE SHADED IN PURPLE.
THOSE ARE AREAS WHERE THE
MAJORITY OF THE POPULATION
IDENTIFIES AS BLACK OR
AFRICAN-AMERICAN.
AND THEN AREAS THAT ARE SHADED
IN GREEN, THOSE ARE AREAS THAT
ARE PREDOMINANTLY POPULATED BY
INDIVIDUALS WHO IDENTIFY AS
HISPANIC OR LATINX.
THERE ARE SOME THAT ARE SHADED
IN BLUE AND THOSE ARE AREAS
WHERE THE MAJORITY OF THE
POPULATION IDENTIFIES AS ASIAN.
AND THEN THE LIGHT AREAS ARE
THOSE WHERE THE MAJORITY OF THE
POPULATION IDENTIFIES AS WHITE.
SO WE SEE HERE THAT THERE ARE
POCKETS WITHIN OAKLAND AND THE
EAST BAY WHERE I WORK WHERE
THERE ARE CLEARLY MORE PATIENTS
WHO IDENTIFY AS BLACK OR
AFRICAN-AMERICAN AND OTHER AREAS
THAT ARE PREDOMINANTLY HISPANIC
OR LATINX.
SO LET'S GO TO SOME OTHER
SLIDES, SOME OTHER MAPS.
LOOK AT THIS.
NOW WE'RE LOOKING AT EDUCATIONAL
ATTAINMENT.
AND LOOK AT THAT.
THOSE SAME AREAS THAT WERE
FUSCHIA AND GREEN, SO
PREDOMINANTLY BLACK AND LATINX,
CORRESPOND TO AREAS HERE WHERE
30 TO 100% OF PEOPLE ARE WITHOUT
A HIGH SCHOOL DIPLOMA OR
EQUIVALENT.
SO, THE AREAS WHERE THERE IS A
MAJORITY BLACK OR HISPANIC
LATINX POPULATION, ARE ALSO
AREAS WHERE PEOPLE HAVE BEEN
DEPRIVED FROM THE SAME ACCESS TO
EDUCATION THAT MOST OF US IN
THIS AUDIENCE HAVE.
AND IT CONTRASTS WITH AREAS THAT
ARE PREDOMINANTLY WHITE AND
PREDOMINANTLY ASIAN WHERE WE SEE
MUCH HIGHER EDUCATIONAL
ATTAINMENT.
LET'S LOOK AT ANOTHER MAP.
NEXT SLIDE.
LET'S LOOK AT POVERTY.
THOSE SAME AREAS THAT ARE
PREDOMINANTLY BLACK
AFRICAN-AMERICAN AND HISPANIC
LATINX, AND SOME AREAS THAT ARE
PREDOMINANTLY ASIAN, ARE ALSO
AREAS WHERE 30-50% OF THE
POPULATION LIVES SIGNIFICANTLY
BELOW THE FEDERAL POVERTY LEVEL.
SO, WE SEE HERE THAT SPECIFIC
RACE GROUPS TEND TO LIVE IN
AREAS THAT ARE SUPERIMPOSED ON
AREAS OF POVERTY, SIGNIFICANT
POVERTY.
NEXT SLIDE, PLEASE.
PER SENT WITH ANY DISABILITY
MAPS DIRECTLY OVER AREAS THAT
ARE BORDER.
THE MAJORITY OF OUR DISABLED
INDIVIDUALS ARE LIVING IN
POVERTY AND LIVING WITHIN
CONTEXT OF INTERGENERATIONAL
POVERTY.
NEXT SLIDE, PLEASE.
AND THEN LET'S TAKE A BREATH AND
LOOK AT THIS.
LET'S LOOK AT OAKLAND
SPECIFICALLY.
THERE IS -- IT'S BEEN DOCUMENTED
THAT THERE IS UP TO A 20-YEAR
LIFE EXPECTANCY GAP WITHIN MY
CITY, WITHIN OAKLAND, BETWEEN
ZIP CODES THAT ARE PREDOMINANTLY
BLACK, AFRICAN-AMERICAN, LATINX
AND THOSE THAT ARE PREDOMINANTLY
WHITE AND THE HILLS.
OKAY?
SO THIS IS WHAT WE'RE LOOKING AT
WHEN WE'RE TALKING ABOUT
BUILDING A DIVERSE RESEARCH
COMMUNITY, FIGHTING AGAINST
MISTRUST, BUILDING TRUST.
WE ARE TALKING ABOUT ENGAGING A
POPULATION THAT IS OFTEN COPING
WITH POVERTY, LACK OF EDUCATION,
NEXT SLIDE, PLEASE.
SO TO QUOTE A FAMOUS
PHILOSOPHER, JAY-Z, THEY HAVE 99
PROBLEMS AND RESEARCH ISN'T ONE
FOR THEM RIGHT NOW, RIGHT?
THEY MAY NOT HAVE HOUSING.
THEY HAVE CHILD CARE ISSUES.
ESPECIALLY IF THEIR CHILD HAS A
DISABILITY LIKE DOWN SYNDROME
WHERE IT BECOMES EVEN HARDER TO
FIND ADEQUATE CHILD CARE.
LACK OF ACCESS TO FAIR
EMPLOYMENT THAT PAYS A LIVEABLE
WAAGE MY PATIENTS CAN'T SLEEP AT
NIGHT BECAUSE THEY HEAR GUNSHOTS
ALL NIGHT.
THERE IS EXTREME COMMUNITY
VIOLENCE.
HOW DO WE TALK ABOUT HEALTH AND
HEALTH BEHAVIORS WHEN WE LICH IN
FOOD DESERTS?
-- LIVE -- WHERE THE CLOSEST
GROCERY STORE IS MILES AWAY AND
ONE DOES NOT HAVE A CAR BECAUSE
THEY CANNOT AFFORD A CAR.
AND PUBLIC TRANSPORTATION ISN'T
EASILY ACCESSIBLE AND SO WHAT WE
HAVE IS THE LOCAL LICKER STORE
THAT WILL SELL YOU CHEETOS AND
SODA FOR ANY SORT OF AFFORDABLE
PRICE BECAUSE GOD FORBID YOU
CAN'T AFFORD THAT 3 DOLLAR
APPLE.
THERE IS INADEQUATE SCHOOL
PROGRAMS AND SUPPORTS.
I WISH THAT I HAD NEVER HEARD
THE LINE I HEAR SO OFTEN WHEN I
GO TO IEP MEETINGS AND I HEAR,
WELL, THE KID ISN'T SPEAKING YET
SO THEY SHOULDN'T GET SPEECH
THERAPY BECAUSE THEY ARE NOT
SPEAKING YET.
WOW.
BUT THIS IS WHAT OUR PATIENTS
ARE DEALING WITH.
AND LACK OF RESPITE.
OUR PARENTS ARE TIRED.
OUR PARENTS ARE OVERWORKED AND
THERE ISN'T ANYBODY AVAILABLE TO
STEP IN AND PROVIDE MEANINGFUL
RESPITE.
NEXT.
SO LET ME TELL YOU ABOUT WHERE I
WORK SPECIFICALLY.
I WORK AT UCSF CHILDREN'S
HOSPITAL OAKLAND FEDERALLY
QUALIFIED HEALTH CENTER.
WE ARE THE ONLY PEDIATRIC ONLY
FEDERALLY QUALIFIED HEALTH
CENTER THAT WE KNOW OF IN THE
NATION.
WE SERVE ALMOST 10,000 UNIQUE
PATIENTS, 35% OF THEM IDENTIFY
AS BLACK AFRICAN-AMERICAN, ABOUT
30% IDENTIFY AS HISPANIC OR
LATINX AND THEN 24% OF THEM
IDENTIFY AS OTHER OR MIXED.
MOST OF THEM, ABOUT 80% OF THEM
ARE COVERED BY MEDICAID, BY
GOVERNMENT INSURANCE.
NEXT.
SO HOW DO WE CONDUCT RESEARCH
WITHIN THE MEDICAL HOME?
WELL, FOR ONE, RECRUITMENT
OCCURS WITHIN A TRUSTED SETTING.
WE ARE ALL TRAINED ON
TRAUMA-INFORMED CARE AND
APPROACHES.
IT'S NOT WHAT IS WRONG WITH YOU.
IT'S WHAT HAPPENED TO YOU?
THAT MAY BE MAKING YOU REACT A
CERTAIN WAY ABOUT WHAT I AM
SUGGESTING THAT MAKES YOU
EXPERIENCE THE VISIT THE WAY
THAT YOU'RE EXPERIENCING IT.
WE RECRUIT HEAVILY FOR RACE AND
LANGUAGE CONCORDANCE PROVIDERS
AND RESEARCH COORDINATORS.
SO THAT FROM THE VERY BEGINNING,
IT'S NOT A BUNCH OF WHITE PEOPLE
ASKING YOU TO DONATE YOUR TIME
AND EXPERTISE AND PERHAPS
SAMPLES FOR RESEARCH.
ALL RECRUITMENT MATERIALS,
CONSENT FORMS, ARE REVIEWED BY A
DIVERSE TEAM THAT CAN SPOT THE
BLINDSPOTS.
THEY CAN SPOT THE LANGUAGE THAT
MIGHT ACTIVATE TRAUMA.
THEY CAN MAKE SURE THAT THE
WORDING AND THE GRAPHICS THAT
ARE USED THAT ARE REPRESENTATIVE
OF THE DIVERSE COMMUNITY THAT WE
SERVE AND WE HOPE TO RECRUIT.
ALL MATERIALS ARE ALWAYS
TRANSLATED IN SPANISH BY TRAINED
INTERPRETERS AND WE HAVE ON CALL
VIDEO INTERPRETERS AVAILABLE FOR
CONSENT IN ADDITIONAL LANGUAGES.
AND, WE ALWAYS SHARE BACK OUR
RESULTS WITHIN THE COMMUNITY.
WE HAVE STRONG PARTNERSHIPS WITH
COMMUNITY ORGANIZATIONS TO HAVE
THE OPPORTUNITY TO SHARE BACK
RESULTS AS WELL AS TO GIVE BACK
IN THE FORM OF LECTURES AND
OTHER COMMUNITY EDUCATION.
NEXT.
WE MEET FAMILIES WHERE THEY ARE.
RECRUITMENT TAKES PLACE DURING
CLINICAL VISITS WHENEVER
POSSIBLE.
WE REALIZE THAT WE ARE ASKING
FAMILIES WHO ARE ALREADY
OVERBURDENED TO SUPPORT OUR
RESEARCH EFFORTS.
SO WE REALLY STRIVE TO RECRUIT
DURING THE CLINIC VISIT AND WE
HAVE EXPERT RESEARCH
COORDINATORS WHO KNOW TO WORK
AROUND THE PROVIDERS TO REALLY
VALUE EVERY MINUTE OF THE
FAMILY'S TIME.
OUR COORDINATORS COMMUNICATE
WITH THE FAMILIES IN THEIR
PREFERRED METHOD.
SO MANY FAMILIES ARE HARD TO
REACH BY PHONE CALL BUT MUCH
MORE REACHABLE BY TEXT.
THERE MAY BE TIMES OF A DAY A
FAMILY IS MORE AVAILABLE SO WE
TRY THOSE TIMES.
AND WE HAVE FLEXIBLE SCHEDULING
FOR RESEARCH VISITS THAT
MINIMIZES ABSENCE FROM SCHOOL,
THAT ALLOWS FOR THE FAMILY TO
COME WITH THAT RIDE THAT THEY
MIGHT ASK FOR, ET CETERA, AND WE
REQUEST OR OFFER SUPPORT WITH
TRANSPORTATION.
PAIRING THE RESEARCH VISIT WITH
A CLINICAL VISIT ALLOWS US TO
LEVERAGE THE TRANSPORTATION
BENEFITS THAT ARE AVAILABLE
THROUGH INSURANCE TO ENSURE THAT
THE FAMILY CAN ACTUALLY MAKE IT
TO THEIR APPOINTMENT.
AND WE HELP WITH OTHER KIDS WHO
MAY BE PRESENT DURING THE
RESEARCH VISIT.
WE INCLUDE IN OUR BUDGET THE
DISTRACTION MATERIALS THAT CAN
ENGAGE THE SIBLINGS WHO MAY BE
THERE SO THAT IT DOESN'T ADD AN
ADDITIONAL DAUNTING TASK OF
MANAGING THE SIBLINGS AND THE
KID WHILE ALSO PARTICIPATING IN
WHATEVER RESEARCH.
NEXT SLIDE.
IT'S A TWO-WAY STREET.
ONE OF MY MENTORS, DR. DANA LONG
FEATURED IN THE PREVIOUS SLIDE,
HELPED CREATE WHAT IS CALLED THE
FAMILY INFORMATION AND
NAVIGATION DESK WHICH IS STAFFED
BY COMMUNITY I NAVIGATORS AND
CAN HELP CONNECT FAMILIES WITH
RESOURCES WITHIN THE COMMUNITIES
THAT ADDRESS THEIR NEEDS.
AND WE PAIR RESEARCH VISITS WITH
DISCUSSION WITH THE FINE
NAVIGATOR TO MAKE SURE THAT
EVERY VISIT IS TRULY SYMBIOTIC
AND BIDIRECTIONAL.
WE HAVE A FOOD PHARMACY WHERE WE
GIVE OUT FRESH FRUITS AND
VEGETABLES GROWN ON A ROOFTOP
GARDEN NEAR OUR CLINIC TO MAKE
SURE OUR FAMILIES HAVE ACCESS TO
FRESH FRUITS AND VEGETABLES.
WE HAVE ON SITE SOCIAL WORKERS
THAT CAN BE AVAILABLE TO MEET
WITH FAMILIES IF SOCIAL NEEDS
ARISE.
AND AGAIN, BECAUSE THE RESEARCH
IS EMBEDDED WITHIN THE CLINIC,
THE PATIENT'S MEDICAL NEEDS CAN
BE MET THE SAME DAY.
WE SHOW UP FOR OUR PATIENTS.
WE ADVOCATE TO ADDRESS THOSE
SOCIAL DRIVERS OF HEALTH THAT
ARE FEEDING MISTRUST THROUGH
MEDICAL/LEGAL PARTNERSHIPS,
SUPPORT AT IEP MEETINGS, SUPPORT
WITH OBTAINING DISABILITY
BENEFITS.
NEXT SLIDE.
AND LET'S ADDRESS THE ELEPHANT
IN THE ROOM.
STATE-OF-THE-ART, HIGH QUALITY,
DOWN SYNDROME CARE REQUIRES
ADDITIONAL TIME AND RESOURCES,
ADDITIONAL CARE COORDINATION,
ADVOCACY.
AND ALL OF THIS FALLS BACK ON
THE PROVIDER.
SO THE BARRIERS TO RESEARCH IN
MY CONTEXT IS THE LACK OF
SUPPORT FOR THE CLINICAL
PROGRAMS BECAUSE I HAVE TO SPEND
HOURS EVERY WEEK THINKING ABOUT
HOW TO SECURE PHILANTHROPIC
SUPPORT JUST KEEP GOING.
FOR RESEARCH EFFORTS TO INCLUDE
LINGUISTICALLY, ETHICAL AND
ECONOMICALLY DIVERSE
COMMUNITIES, RECRUITED FROM
PROGRAMS THAT ARE EMBEDDED IN
THESE COMMUNITIES, MORE SUPPORT
IS NEEDED FOR THE CLINICAL
PROGRAMS.
THIS IS WHERE WE HAVE TO BREAK
THE SILO BETWEEN WHAT IS
RESEARCH FUNDING AND WHAT IS
FUNDING FOR THE CLINICAL PROGRAM
THAT IS ARE PIPELINED FOR THAT
RESEARCH.
SO THAT WE ARE NOT USING HUMAN
SUBJECTS FOR RESEARCH.
WE ARE PARTNERING SO THAT WHILE
WE PROVIDE THE CLINICAL CARE, WE
ARE ALSO ADVANCING KNOWLEDGE TO
ENHANCE THAT SAME CARE THAT WE
ARE PROVIDING.
NEXT SLIDE.
AND SINCE IT'S BEEN A LONG DAY,
I THOUGHT I WOULD END WITH A
VIDEO WHERE SOME OF MY PATIENTS
SHARE SOME OF THEIR EXPERIENCES
INTERACTING WITH HER TO GIVE YOU
A GLIMPSE INTO WHAT DEEP TRUST
LOOKS LIKE WITHIN A CLINICAL
CONTEXT.
[ MUSIC PLAYING ]
>> HI GUYS, THIS IS ME WHAT IS
YOUR NAME?
>> DR. NAOMI HAPPENS TO
UNDERSTAND MORE ABOUT DOWN
SYNDROME AND TO HELP UNDERSTAND
MORE ABOUT HEALTH.
IT'S VERY IMPORTANT TO US TO
HAVE DR. NOEMI SPINAZZI AND HER
TEAM WORKING WITH US SO WE CAN
LEARN MORE AND THEN JOIN
CECILIA'S LIFE.
>> I TREASURED MY SON TO
CHARLIE'S CLINIC AND AS SOON AS
I DISCOVERED IT, I'M SO GLAD
THAT I DID BECAUSE IT'S BEEN
LIFE CHANGING FOR MY SON.
UNDER NOEMI SPINAZZI'S CARE HE'S
BEEN NEARLY CURED OF SLEEP APNEA
WHICH WAS A HUGE CONCERN FOR US
BEFORE.
THANK YOU DR. NOEMI SPINAZZI!
>> THANK YOU.
>> WE HAVE BEEN GOING TO SEE
DR. NOEMI SPINAZZI FOR THE PAST
FIVE YEARS AND HAD A TREMENDOUS
IMPACT ON OUR ENTIRE FAMILY.
>> DR. NOEMI SPINAZZI AND HER
TEAM HAVE BEEN AMAZING AND
HONESTLY BEEN THE KEY TO HELPING
ME LAY THE BEST POSSIBLE
FOUNDATION FOR MY DAUGHTER.
NOT ONLY DO THEY ASSIST WITH HER
MEDICAL NEEDS BUT THEY HAVE ALSO
HELPED ALONG THE WAY WITH HER
EDUCATIONAL CAREER AND I
COULDN'T BE MORE GRATEFUL.
[ SINGING ]
>> DR. NOEMI SPINAZZI AND HER
TEAM'S CARE EXTRAORDINARY.
AND IT GOES BEYOND JUST LOOKING
AT THE MEDICAL PIECE.
IT'S TRULY HOLISTIC.
>> WHAT WE APPRECIATE THE MOST
ABOUT IT IS DR. NOEMI SPINAZZI'S
DEDICATION, CARE AND LOVE AND
SUPPORT, FUNDRAISERS, NEEDS AND
HELP.
SHE HAS ALWAYS BEEN SUCH
MOTIVATION FOR HER.
SHE ALWAYS GOES ABOVE AND
BEYOND.
FOR THAT AND MANY MORE REASONS,
LET ME THANK YOU CHARLIE'S
CLINIC AND THE WHOLE STAFF.
>> THANK YOU DR. NOEMI SPINAZZI.
>> SHE CHECKS MINE.
>> YES.
>> ALL RIGHT SO WE ARE GOING TO
SAY GOOD BY.
GOODBYE EVERYBODY.
>> BYE-BYE.
[ MUSIC PLAYING ]
>> YOU ARE RIGHT.
WHAT A GREAT WAY TO END YOUR
PRESENTATION.
ABSOLUTELY BEAUTIFUL.
AND REALLY COMMEND YOU FOR ALL
THE GREAT WORK YOU'RE DOING
THERE IN OAKLAND.
OBVIOUSLY THEY LOVE YOU VERY
MUCH.
SO WE HAVE ABOUT 20 MINUTES FOR
ANY QUESTIONS.
PLEASE, INDIVIDUALS FEEL FREE TO
ASK YOUR QUESTIONS OR PUT YOUR
QUESTIONS IN THE CHAT.
ANNA HAS A QUESTION.
GO AHEAD.
YOU CAN GO AHEAD AND ASK YOUR
QUESTION.
>> HI, THANK YOU.
ALWAYS FUN TO END ON YOUR VIDEOS
AND YOU'RE A JOY.
AND I THINK THAT TIED IN NICELY
TO WHAT KATE WAS PRESENTING SO
IT'S A COMBINED QUESTION FOR
NOEMI AND KATE.
KATE, YOU MENTIONED BRINGING THE
JOY AND THE FUN TO THE RURAL
COMMUNITY ACTIVITIES AND THEN
NOEMI, YOU DEFINITELY BRING THE
JOY AND FUN TO THE MEDICAL
CLINIC.
SO HOW DO WE THEN BRIDGE THAT
JOY AND THE FUN TO THE RURAL
COMMUNITIES FOR THEN TRYING TO
INCREASE RESEARCH ENGAGEMENT?
OR DID KATE LEAVE?
>> I'M HERE.
SORRY.
I'M SORRY.
I DIDN'T HEAR THE QUESTION.
>> I WAS ASKING HOW DO WE
BRING -- SO NOEMI BRINGS THAT
JOY AND FUN TO A MEDICAL CLINIC
WHERE YOU CAN HAVE LOTS OF
EXPOSURE AND FREQUENT CONTACT
BUT THEN HOW DO WE BRING THAT
JOY AND THAT FUN THAT SHE WAS
DESCRIBING AND THE JOY AND FUN
YOU WERE SAYING IS ESSENTIAL TO
ENGAGING THE RURAL COMMUNITIES.
HOW DO WE BRIDGE THOSE TWO TO
BRIDGE RURAL INTO RESEARCH
PARTICIPATION?
>> KATE: SO, I GUESS --
OBVIOUSLY THERE IS NO PERFECT
FIT.
BUT I THINK WHEN YOU'RE LOOKING
AT RURAL PARTICIPATION, ONE OF
THE THINGS THAT WE'VE DISCOVERED
BECAUSE WE HAVE QUITE A FEW
DOCTORS THAT HAVE JOINED FORCES
WITH US IN A LOT OF THERAPISTS
WHO HAVE JOINED FORCES WITH US.
WHEN YOU BEGIN TO CELEBRATE THAT
JOY, IT REALLY BECOMES VERY
ATTRACTIVE TO OTHER PEOPLE
WITHIN THE COMMUNITY.
AND THEY BEGIN TO SHARE IN AND
AMONG THEMSELVES.
SO, FOR EXAMPLE, I USE LIKE --
DR. McCORMACK I DON'T THINK IS
ON THIS BUT HE HAS BEEN TO OUR
AREA BEFORE TO VISIT.
LIKE WE BROUGHT HIM IN.
AND I THINK ONE OF THE THINGS
THEN IS THOSE CONNECTIONS.
LIKE HOSTING THOSE CONNECTION
EVENTS BY WHICH YOU HAVE PARENTS
AND TEACHERS AND THERAPISTS AND
THEN OH, YES, THERE HAPPENS TO
BE A RESEARCH OPPORTUNITY
THROUGH THIS LOVELY FRIEND OF
MINE.
AND IT KIND OF SPEAKS ABOUT
GOING BACK TO HER TRUST-BUILDING
EXERCISES SHE IS TALKING ABOUT
IN BEGINNING TO BUILD THAT
COMMUNITY.
SO I GUESS THAT IS -- IT'S NOT A
PERFECT ANSWER.
I CAN GIVE YOU EXAMPLES.
IT'S WHAT WE HAVE DONE AND
EFFECTIVE WITH US TO BEGIN TO
BRIDGE THOSE CONNECTIONS LIKE
AND WE HAVE SENT MANY -- ONE OF
OUR SCHOLARSHIP RECIPIENTS HAD A
KIDDO WHO HAD SOMETHING CALLED
NGL1 AND PARTICIPATED IN MANY OF
THE NIH'S RESEARCH TRIALS.
BUT IT'S BEGINNING TO BRIDGE
SOME OF THOSE GAPS.
>> BUT IT SOUNDS LIKE TRAVELING
TO THE RURAL COMMUNITIES IS PART
OF THE COMMUNITY TO BUILD THE
TRUST.
>> I THINK YOU'RE GOING TO HAVE
A REALLY HARD TIME BUILDING
TRUST IN RURAL COMMUNITIES
WITHOUT GETTING SOME AMBASSADORS
OUT INTO THOSE RURAL
COMMUNITIES.
IT DOESN'T NECESSARILY HAVE TO
BE -- BUT A REPRESENTATIVE OUT
IN THERE MEANS THE WORLD BECAUSE
WE HAVE PEOPLE -- IT'S DIFFICULT
TO EACH GET PEOPLE FROM ST.
LOUIS TO COME TO OUR RURAL
AREAS.
>> BUT TO BUILD ON WHAT KATE
JUST SAID, HOW CAN ONE EVEN
UNDERSTAND WHAT MAYBE THE
EXPERIENCE AND THE BARRIERS
RECRUIT AND PARTICIPATION
WITHOUT GOING, WITHOUT SEEING
IT, RIGHT?
SO UNDERSTANDING THAT IT'S NOT
JUST GOING FOR THE SAKE OF
SHOWING YOUR FACE IT'S GOING TO
UNDERSTAND THE COMMUNITY AND
GETTING A FEEL FOR THE PERSON
WHO COMES TO THE EVENT AND
ACTUALLY DROVE TWO HOURS JUST TO
GET TO THAT ONE-HOUR COOKIE
DECORATING COMMUNITY BUILDING
ACTIVITY TO UNDERSTAND THE
DYNAMIC OF THE GROUP.
KATE MENTIONED LANGUAGE.
SHE MENTIONED DON'T CALL IT
SUPPORT GROUP.
CALL IT FRIENDS OF FUN.
YOU LISTEN TO PEOPLE.
YOU LISTEN TO THE LANGUAGE THAT
IS USED.
YOU TRY AND MAKE MISTAKES IN
TERMS OF HOW YOU EXPRESS
YOURSELF TO REALLY LEARN HOW TO
COMMUNICATE EFFECTIVELY.
I ALWAYS TALK ABOUT IN
CALIFORNIA, DEPARTMENT OF
DEVELOPMENTAL SERVICES ARE
MANAGED THROUGH A SYSTEM OF
REGIONAL CENTERS.
AND SO ONE TIME I SAID, I'M
GOING TO REFER YOU TO THE
REGIONAL CENTER.
NO BIG DEAL.
I GOT FIRED BY THAT FAMILY WHO
DIDN'T COME BACK FOR THREE
YEARS.
THEY CAME BACK, THEY WERE FROM
ALGAIA.
I SAID, WHAT HAPPENED?
WELL, YOU WANTED TO
INSTITUTIONALIZE MY CHILD
BECAUSE, CENTER, TO THEM MEANT
INSTITUTIONALIZE.
I LEARNED THAT BECAUSE I MADE A
MISTAKE AND NOW I ALWAYS SAY,
I'M GOING TO REFER YOU TO A CASE
MANAGEMENT OR A REGIONAL CENTER.
IT'S AN ORGANIZATION, NOT A
PHYSICAL PLACE.
THESE ARE THINGS YOU ONLY GET TO
LEARN IF YOU GET TO HAVE THE
INTERACTION AND MAKE THAT
MISTAKE, RIGHT?
SO THE POWER OF RELATIONSHIPS,
THE POWER OF BEING THERE MEANS
SO MUCH.
SO IT SHOULD BE BUILT INTO THE
BUDGET FOR RESEARCH STUDIES.
>> CAN I PIGGYBACK OFF WHAT
NOEMI SAID ABOUT THE IMPORTANCE
OF LANGUAGE?
IT VERY MUCH MATTERS.
WITHIN OUR COMMUNITY, HAVING
PROFESSIONALS WHO UNDERSTAND
LIKE PERSON-FIRST VERSUS
IDENTITY-FIRST ADDITIONALLY,
BECAUSE ONE OF THE THINGS, AND
I'M GOING TO OFFEND SOME PEOPLE
AND I DON'T MEAN TO.
IT'S THE ONLY EXAMPLE.
I WAS SITTING IN ONE OF MY FIRST
MEETINGS RELATED TO ELLIOT.
IT WASN'T ELLIOT, ANOTHER CHILD
WHO HAPPENED TO HAVE DOWN
SYNDROME.
AND THE SPECIAL EDUCATION
DIRECTOR AT THAT TIME REFERRED
TO THE CHILD AS A DOWNSIE.
AND THAT WAS THE SPECIAL
EDUCATION DIRECTOR FOR NOT A
SMALL DISTRICT IN MY AREA.
THE LOOK ON MY FACE WHEN YOU'RE
DEALING WITH A PROFESSIONAL WHO
USES THAT KIND OF A LANGUAGE,
AND THIS IS PROBABLY 2010, IS
UNACCEPTABLE.
HOWEVER, THE REALITY IS, MANY
FAMILIES LOVED HIM BECAUSE THEY
DIDN'T EVEN REALIZE THAT THAT
WAS INAPPROPRIATE LANGUAGE.
AND I HOPE THAT HORRIFIES
EVERYBODY ON THIS PANEL OR ON
THIS CENTER.
BUT JUST TO THAT POINT OF, IT'S
ALSO AN EDUCATION COMPONENT AS
WELL.
>> AND I WOULD LIKE TO ADD TO
THIS DISCUSSION OF THE POINT
THAT KATE, YOU BROUGHT UP AND OF
COURSE NOEMI IN YOUR
PRESENTATION.
I THINK THERE ARE A LOT OF
SIMILARITIES IN WHAT WE SEE IN
LOW AND MIDDLE-INCOME COUNTRIES
AND ALSO IN THE RURAL
COMMUNITIES HERE IN THE U.S.
SO I THINK THE LESSONS IN WE ARE
LEARNING FROM OUR INVESTMENTS IN
LOW AND MIDDLE-INCOME COUNTRIES
THE CULTURAL BARRIERS, THE
LANGUAGE, MEETING THE PEOPLE
WHERE THEY ARE, HAVE TRUSTED
COMMUNITY MEMBERS OR RESEARCHERS
WHO ARE WORKING IN DIFFERENT
COUNTRIES.
THEY ACTUALLY PARTNER WITH LOCAL
LEADERS, CAPACITY BUILDING IS
SOMETHING THAT IS PART OF A LOT
OF THE PROGRAMS THAT WE FUND
HERE IN LOW AND MILT INCOME
COUNTRIES, AGAIN TO BUILD
INFRASTRUCTURE IN THOSE PLACES
SO THAT PARTNERSHIPS CAN
CONTINUE.
AND I HAVE TO ECHO DR. NATHAN
STINSON, THE LAST LINE FROM THE
ELENA GRIGORENKO SLIDE.
I HAVE TO USE THAT WITH
PERMISSION.
THAT EXIST IN SUCH A WAY THAT
RETURN IS POSSIBLE.
AND I THINK THAT HIGHLIGHTS THE
TWO-WAY COMMUNICATION OF TWO-WAY
STREET WHERE WE ARE LEARNING
FROM THE COMMUNITIES WHAT THE
NEEDS ARE.
AND THEN MEETING THEM AT THAT
POINT RATHER THAN SAYING OKAY,
THIS IS WHAT WE THINK YOU NEED.
SO, AGAIN A REMINDER THAT THE
QUESTION AND ANSWERS ARE ALSO
BEING INTERPRETED INTO THE
SPANISH SO A REMINDER TO ALL OF
US TO SPEAK SLOWLY.
IN FACT, LINDA IS OVER AT THAT
ROLE AS WELL.
SO THAT WE CAN GIVE THEM AN
OPPORTUNITY TO ASK QUESTIONS AND
THEN THE INTERPRETER WILL
INTERPRET THAT FOR THEM FOR
THOSE ATTENDEES.
>> THERE IS A QUESTION IN THE
CHAT FOR ANY OF THE PANELISTS.
HOW CAN WE GET MORE MEDICAL
PROFESSIONALS TO BE AS
PASSIONATE ABOUT DOWN SYNDROME
AS YOU ALL ARE?
AND PARENTHESES, WE NEED TO MAKE
THEM SEE WHAT THEY ARE MISSING.
ABSOLUTELY.
>> I THINK ONE OF THE THINGS WE
CAN ALL DO TO MAKE THAT HAPPEN
IS ADVOCATE FOR HEALTH CARE
REFORM SO THERE ISN'T THE WILD
EXPECTATION THAT WE CAN DO ALL
OF THIS AND MORE IN 15 MINUTES
OF THE MYTHICAL 15-MINUTE DOCTOR
APPOINTMENT.
AND WE SUPPORT THE EXPANSION OF
AN APPROPRIATE HEALTH CARE
WORKFORCE AND EXTEND INSURANCE
COVERAGE TO EVERYONE.
I WANT TO AGREE WITH KATE.
PROVIDERS SHOULD JOIN THE DOWN
SYNDROME MEDICAL GROUP AND WE
ARE MEMBERS --
[ MULTIPLE SPEAKERS ]
>> -- PHYSICIANS TO RULE I CAN'T
RECALL.
EVERY PHYSICIAN WE SENT, I THINK
SIX DOCTORS AND I THINK THREE
DIFFERENT THERAPISTS.
EVERY ONE OF THEM WHEN THEY HAVE
DONE THIS HAVE SAID IT'S JUST
BEEN A WEALTH OF INFORMATION FOR
THEM THAT THEY HAVE BEEN ABLE TO
TAKE BACK.
>> AND I'LL PUT IN A PLUG FOR
DISMI R AND NDSC.
WHEN I FIRST STARTED OUT I
LOOKED UP -- IS THERE A
CONFERENCE SPECIFIC TO DOWN
SYNDROME?
OH, IT'S IN ORLANDO IN THREE
DAYS!
I BETTER GET THERE.
I DIDN'T KNOW THAT IT EXISTED.
I WALKED INTO THE ROOM AS THE
CONFERENCE JUST STARTED ASKING
AM I IN THE RIGHT PLACE?
YOU ABOUT I ALSO HAD BEEN
ATTENDING NDSC AND SYMPOSIUMS
AND SEMINARS AND THAT HAS
ABSOLUTELY BUILT MY KNOWLEDGE
AND GROWN MY EXCITEMENT FOR ALL
THAT THERE IS TO KNOW ABOUT DOWN
SYNDROME.
AND I ALSO SAY THAT THE MORE
PEOPLE WITH DOWN SYNDROME YOU
GET TO KNOW, THE HARDER IT IS TO
NOT GET PASSIONATE ABOUT TAKING
CARE OF THEM.
THEY HAVE INSPIRED ME IN WAYS
THAT I CAN'T QUITE PUT INTO
WORDS.
>> I'M A FAN OF LOCAL CARE, IF
AT ALL POSSIBLE.
AND SO I WOULD ENCOURAGE YOU
PROVIDERS TO JOIN.
WE HAVE A VIRTUAL PRESENTATION
SERIES WITH THE FOCUS BEING ON
LOCAL PROVIDERS.
AND THEN WE ARE WORKING ON
ANOTHER PROJECT, HOPEFULLY IN
THE EARLY PART OF NEXT YEAR THAT
WE'LL BE ABLE TO SUPPORT LOCAL
PROVIDERS TO PROVIDE CARE FOR
PEOPLE WITH DOWN SYNDROME IN
THEIR OWN COMMUNITY.
I HAVE A REAL ACTION FOR THAT
BECAUSE 35 YEARS AGO I WAS A
DOCTOR IN A SMALL TOWN WHO WAS
TRYING TO CARE FOR PEOPLE WITH
DOWN SYNDROME WITH NO
INFORMATION WHATSOEVER TO
SUPPORT WHAT I WAS TRYING TO DO.
SO I GET IT VERY PERSONALLY.
SO, I THINK INFORMATION IS --
DOESN'T SOLVE ALL THE PROBLEMS
IN LIFE BUT IT'S A REAL GOOD
FIRST START.
>> MAYBE THAT'S THE ANSWER TO
THE QUESTION.
SEND MORE MEDICAL PROFESSIONALS
TO THE DISMIC MEETING.
>> AND AGAIN, WE HAVE ADVOCACY
ORGANIZATIONS REPRESENTED HERE.
WE HAVE GOVERNMENT
ORGANIZATIONS.
THERE IS NO INCENTIVE INHERENTLY
TO SAY, HEY, I WILL GO AND TAKE
CARE OF MEDICALLY-COMPLEX
PATIENTS.
NONE.
AND SO, EITHER YOU HAVE SOME
PERSONAL CONNECTION OR SOME
PASSION ON THE INSIDE BUT THERE
ARE NO INCENTIVE.
THERE IS NO BONUS YOU GET FROM
DEPARTMENT OF HEALTH CARE
SERVICES OR WHATEVER THESE
INSTITUTIONS ARE CALLED.
WHERE IS THAT ADVOCACY?
HOW DO WE INCENTIVIZE TAKING
CARE WELL OF HUMAN BEINGS WITH
DISABILITIES IN THIS COUNTRY?
FOR-PROFIT HEALTH CARE SYSTEM?
THAT JUST ISN'T POSSIBLY
INCENTIVIZED BECAUSE IT TAKES
MORE TIME AND MORE EXPERTISE.
THAT'S WHERE WE HAVE TO FUND THE
CLINICAL PROGRAMS THAT ARE DOING
THIS WORK SO THAT THEY CAN BE
WORKFORCE DEVELOPMENT PIPELINES
AND THEY CAN BECOME MODELS FOR
THE TYPE OF CARE THAT WE HOPE
FOR FOR EVERY PERSON FOR DOWN
SYNDROME IN THIS COUNTRY.
>> EXCELLENT POINT.
HOPEFULLY THOSE THAT NEED WILL
GET OTHER PEOPLE TO FOLLOW.
SO, IT DOES REALLY REQUIRE JUST
AS YOU MENTIONED, A DIFFERENT
WAY OF LOOKING AT WHAT THE
HEALTH CARE ENTERPRISE REALLY
SHOULD BE AND WHAT SHOULD BE THE
MOST IMPORTANT ASPECTS OF THAT
ENTERPRISE.
DR. LEY HAS HER HAND UP.
>> FIRST I REALLY APPRECIATE ALL
OF THE SPEAKERS AND I REALLY
WANT TO THANK YOU FOR YOUR
GREATEST AND DEDICATION TO THE
DOWN SYNDROME COMMUNITY I.
I WAS REALLY MOVED ABOUT WHAT
YOU HAVE DONE AND DOING.
AND YOU MENTIONED MORE SUPPORT
FOR THE CLINICAL PROGRAM AS
NEEDED.
COULD YOU GIVE US SOME EXAMPLES
OF HOW NIH COULD SPECIFICALLY
FACILITATE YOUR WORK FOR THE
ENGAGEMENT OF A MORE DIVERSE
POPULATION?
THANK YOU.
>> THE PROBNOEMI SPINAZZI?
>> CAN YOU REPEAT THE QUESTION
SO I CAN MAKE SURE I UNDERSTAND
IT?
>> I THINK YOU MENTIONED IF
THERE WILL BE MORE SUPPORT FOR
THE CLINICAL PROGRAM AS NEEDED,
THAT WOULD BE GREAT.
SO WHAT DO YOU THINK THE NIH
COULD FACILITATE THAT TO PROVIDE
THOSE SUPPORTS TO ENGAGE A MORE
DIVERSE OBSTRUCTION.
THANKS.
>> NOEMI SPINAZZI: THANK YOU.
I MEAN, I AM -- MAYBE DREAMING
HERE.
BUT MUCH LIKE THERE ARE
MENTORSHIP RESEARCH AWARDS,
ET CETERA, COULD THERE BE YOU
KNOW, CLINICAL PIPELINE AWARDS?
THINGS THAT WILL NOT NECESSARILY
HAVE RESEARCH GOALS ATTACHED TO
IT, BUT BECAUSE WE UNDERSTAND
THAT TO DIVERSIFY PARTICIPANTS,
WE NEED TO SUPPORT THE CLINICAL
PROGRAMS, THERE IS BUILT-IN
FINANCIAL SUPPORT FOR THAT AND
CREATING A SYSTEM FOR THOSE
AWARDS TO BE GIVEN AND TO BE
GIVEN WITHOUT A MILLION BARRI
BARRIERS.
IS IT NIH PARTNERING WITH OTHER
ORGANIZATIONS, GOVERNMENT
ORGANIZATIONS IN A WAY THAT
SLOWLY US CLINICIANS DON'T HAVE
ACCESS TO TO SAY, HEY, THIS IS
WHAT WE ARE HEARING.
HOW DO YOU ENVISION THIS THROUGH
THE HHS DEPARTMENT OR WHATEVER
ELSE IT MIGHT BE.
THE NIH LOOKING -- IF THE NIH IS
SERIOUS ABOUT WORKFORCE
DEVELOPMENT, ABOUT EDUCATION OF
THE BROADER COMMUNITY, WE TALKED
ABOUT DISMIC.
HOW CAN THE NIH SUPPORT
ORGANIZATIONS FINANCIALLY SO
THAT THEY CAN OFFER SCHOLARSHIPS
AND FREE ATTENDANCE OR A YEAR
FREE MEMBERSHIP TO CLINICIANS
THAT HAVE AN INTEREST IN COMPLEX
CARE AND HAVEN'T SPECIALIZED IN
DOWN SYNDROME SPECIFICALLY.
OR YOUNG INVESTIGATORS WHO ARE
THINKING ABOUT THEIR RESEARCH
CAREER AND HAVEN'T YET DECIDED
WHERE TO LAND.
SO, HOW IT IS IMPLEMENTED, YOU
KNOW, SKY IS THE LIMIT WHETHER
IT COMES FROM NIH SPECIFICALLY
WITH GRANTS THAT DON'T EXPECT A
RESEARCH OUTCOME NECESSARILY,
BUT PERHAPS A COLLABORATION
OUTCOME OR A CREATION OF A
RESEARCH PARTICIPANT PIPELINE
TYPE OF THING.
THOSE ARE JUSTED SOME IDEAS.
OR PARTNERSHIP WITH OTHER
ORGANIZATIONS THAT MORE
SPECIFICALLY FUND THESE EFFORTS
AS WELL AS SUPPORTING THE
PROFESSIONAL ORGANIZATIONS.
I'M CURIOUS AS TO WHAT DR. BRIAN
CHICOINE THINKS ABOUT THIS
BECAUSE THAT WAS HIS BIG MESSAGE
TOO FROM WHAT I GOT FROM HIS
TALK WAS ALSO TAKE CARE OF THE
PATIENTS CLINICALLY AND THE
RESEARCH WILL FOLLOW.
>> BRIAN CHICOINE: I THINK THEY
HAVE TO BE INTERTWINED.
THEY CAN'T SIT IN SILOS.
WE HAVE TO PROVIDE HIGH-QUALITY
HEALTH CARE FOR THESE
INDIVIDUALS AND THEN WE NEED TO
RESEARCH THAT CARE SO IT'S EVEN
HIGHER QUALITY.
AND THE TWO HAVE TO GO
HAND-IN-HAND.
I DO NOT THINK PEOPLE ARE GOING
TO LINE UP FOR RESEARCH IF THEY
ARE NOT GETTING GOOD HEALTH
CARE.
AT LEAST IN MY EXPERIENCE.
THAT'S JUST NOT GOING TO HAPPEN.
>> AND I JUST WANT TO
ACKNOWLEDGE SOMETHING THAT WAS
SAID BECAUSE IF I'M
UNDERSTANDING CORRECTLY, I HAVE
BEEN APPROACHED BY THE PEDIATRIC
TRIALS NETWORK TO LOOK AT
METABOLISM OF MEDICATIONS, BUT
THE WAY IT WORKS WITHIN AN
INSTITUTION IS THAT YOU -- LIKE
THEY'LL GIVE YOU MONEY IF YOU
ENROLL THE PATIENT AFTERWARDS.
AND THAT'S NOT HOW INSTITUTIONS
WORK.
FIRST YOU HAVE TO SUBMIT THE
BUDGET AND PROVE THAT YOU'RE
GOING TO HAVE THE FUNDING BEFORE
YOU CAN DREAM OF HIRING A
RESEARCH COORDINATOR.
SO EVEN GETTING TO KNOW HOW THE
INSTITUTIONS WORK AND WHAT THEY
EXPECT TO THEN DESIGN HOW TO
SUPPORT THAT KIND OF RESEARCH
COORDINATOR IS KEY.
I WAS SO EXCITED ABOUT THE
POTENTIAL OF BEING A SITE FOR
THE PEDIATRIC TRIALS NETWORK BUT
BECAUSE I DON'T HAVE A EXISTING
RESEARCH COORDINATOR THAT I
COULD PROVIDE ADDITIONAL FUNDING
TO, IT WAS OUT OF THE QUESTION
FOR ME BECAUSE I COULDN'T GO TO
U-CSF WITH A MAYBE, POSSIBLY
THIS IS THE MONEY WE COULD GET
BUDGET.
WE NEED TO SAY I HAVE THIS
MONEY.
I NEED TO HIRE SOMEONE.
THAT'S HOW IT WORKS ON MY END.
>> THAT'S GREAT FEEDBACK
DR. NOEMI SPINAZZI.
THANK YOU.
SO I JUST WANTED TO HIGHLIGHT
THIS ONE QUESTION IN THE CHAT
FROM MARIA.
I'M NOT SURE WHO THAT QUESTION
IS DIRECTED TO.
BUT I'M JUST GOING TO ASK -- IT
ASKS, DO YOU HAVE OFFICE OR
COLLABORATION IN TEXAS?
MARIA, IF YOU COULD COME OFF
MUTE AND CLARIFY WHO THIS
QUESTION IS FOR.
>> I'M NOT SURE I UNDERSTAND THE
QUESTION COMPLETELY BUT I THINK
CERTAINLY TOW GET SERVICES IN
TEXAS, I WOULD ENCOURAGE THE
GLOBAL DOWN SYNDROME FOUNDATION
HAS A LIST OF ORGANIZATIONS OR A
LIST OF CLINICS ACROSS THE
COUNTRY AND I KNOW THERE ARE
SOME IN TEXAS.
AND I'M PRETTY SURE -- KATE DOES
NDSC HAVE THAT AS WELL OR NDSS
THAT HAS THAT LIST ON THE SITE?
I THINK YOU'RE MUTED, KATE.
>> I BELIEVE BOTH OF US ACTUALLY
DO.
>> OKAY.
>> BUT I KNOW NDSC HAS IT.
>> SO YOU GO TO THOSE SITES TO
LOOK FOR PROVIDERS.
>> OKAY.
SO JUST ASKING ONE MORE TIME,
ARE THERE ANY QUESTIONS FROM THE
SPANISH ROOM?
PEOPLE FROM THE BREAKOUT ROOM?
IF NOT, WE WILL, DR. STINSON, WE
CAN GO TO THE CLOSING.
>> NATHAN STINSON: UNFORTUNATELY
WE ARE COMING TO THE END OF THIS
WORKSHOP.
IT'S BEEN A TREMENDOUS TWO DAYS
AND I THANK ALL OF THE
PRESENTERS AND ALL OF THE
PARTICIPANTS IN THIS.
IT'S BEEN A LEARNING EXPERIENCE
FOR ME, WHICH I ALWAYS LIKE TO,
YOU KNOW, FEEL THAT WAY AT THE
END OF A CONFERENCE.
I REALLY HAVE THE PLEASURE AND
HONOR TO INTRODUCE DR. MELISSA
PARISI, THE CHIEF OF THE
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES BRANCH AT THE
EUNICE KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT AT NIH.
DR. PARISI HAS AN M.D., PH.D.
FROM STANFORD UNIVERSITY.
SHE ALSO CHAIRS THE DOWN
SYNDROME CONSORTIUM WHICH IS A
PUBLIC-PRIVATE PARTNERSHIP TO
FACILITATE RESEARCH
COLLABORATIONS.
QUITE FRANKLY, SHE IS THE
INSPIRATIONAL LEADER AND THE
SOUL OF NIH'S INCLUDE
INITIATIVE, WHICH IS
INVESTIGATION OF CO-OCCURRING
CONDITIONS ACROSS THE LIFESPAN
TO UNDERSTAND DOWN SYNDROME.
DR. PARISI, PLEASE GIVE CLOSING
REMARKS.
>> MELISSA PARISI: THANK YOU, SO
MUCH, DR. STINSON FOR THAT
WELCOME AND INTRODUCTION.
YOU'RE FAR TOO KIND AND I THINK
REALLY THE THANKS NEEDS TO GO TO
ALL OF OUR EXCELLENT AND
BRILLIANT PRESENTERS FOR THIS
WORKSHOP OVER THE PAST TWO DAYS
AND FOR THE TEAM THAT HAS PULT
THIS TOGETHER AND EXHIBITED A
LOT OF BLOOD SWEAT AND TEARS IN
ORDER TO MAKE IT HAPPEN.
-- AM I SHARING MY SLIDES?
--
>> THERE IS AN ECHO.
MAYBE YOUR TEAM'S MICROPHONE
NEEDS TO BE MUTED?
>> I CAN DO THAT.
>> US AND REMINDER TO GO A
LITTLE BIT SLOWER FOR THE
INTERPRETER -- AND ALSO REMIND
TO GO SLOWER FOR THE
INTERPRETER.
>> CAN YOU TEST IT NOW?
>> IF YOUR TEAMS IS OPEN, THERE
IS A MICROPHONE BUTTON.
>> I HAVE GOTTEN RID OF TEAMS
NOW.
I THINK THAT WAS PART OF THE
PROBLEM.
CAN YOU HEAR ME NOW?
>> THIS IS GOOD.
THANK YOU.
>> THANK YOU.
AND DO YOU WANT ME TO SHARE MY
SLIDES?
OR IS SOMEBODY ELSE KEYING THEM
UP?
>> YOU CAN SHARE YOUR SCREEN.
>> OKAY.
GIVENY JUST A MOMENT AND I WILL
DO THAT.
ALL RIGHT, THERE IS A REALLY
DAUNTING TASK TO TRY TO
SUMMARIZE THE LAST TWO DAY'S
WORTH OF A WORKSHOP.
BUT I'M GOING TO DO MY BEST AND
I APOLOGIZE IN ADVANCE FOR THE
FACT THAT I'M SUMMARIZING SOME
OF YOUR PRESENTATIONS INTO ONE
SLIDE OR LESS.
SO MY APOLOGIES BUT WE'LL DO OUR
BEST HERE.
SO I THINK IN TERMS OF SETTING
THE STAGE, AS DR. BARDA DID A
FANTASTIC JOB OF DESCRIBING THE
INCLUDE RESEARCH PROJECT AND
DEMONSTRATING HOW THIS NEW
FUNDING SUPPORT FOR DOWN
SYNDROME RESEARCH CAN REALLY
GALVANIZE RESEARCH IN THE THREE
COMPONENTS THAT ARE A PART OF
INCLUDE.
SO WE ARE LOOKING AT BASIC
SCIENCE, COHORT DEVELOPMENT AND
CLINICAL TRIALS.
AND WE ARE ON TRACK TO AWARD 75
MILLION DOLLARS IN FISCAL YEAR
2022 ALONE FOR THE INCLUDE
RESEARCH PROJECT.
THE HOPE THEN IS THAT WE CAN
ADDRESS SOME OF THESE REALLY
SIGNIFICANT DISPARITIES WHICH
ARE ILLUSTRATED IN THE TOP RIGHT
OF THIS SLIDE IN THAT THE LIFE
EXPECTANCY FOR PEOPLE WITH DOWN
SYNDROME IS WIDELY DIVERGENT
DEPENDING ON RACE AND ETHNICITY.
AND THAT IS A REAL PROBLEM AND
THAT IS SOMETHING THAT WE
ABSOLUTELY HAVE TO ADDRESS
THROUGH THIS PROGRAM.
SO, AS PART OF OUR BASIC
INFORMATION AND WORKSHOP
INTRODUCTORY COMMENTS, WE
REVIEWED THE REALLY RICH
DISCUSSIONS FROM THE LISTENING
SESSIONS THAT WERE HOSTED AND
THANKS TO LINDA GARCIA AND
OTHERS, WE HEARD ABOUT SOME OF
THE FEEDBACK FROM FAMILY MEMBERS
AND THEIR LISTENING SESSION AS
WELL AS RESEARCHERS ON THE RIGHT
SIDE OF THIS SLIDE.
AND WHAT I THINK YOU'LL NOTE
THAT IS REALLY IMPORTANT IS THAT
A LOT OF THE BARRIERS FOR
PARTICIPATION IN RESEARCH ARE
SHARED BY BOTH GROUPS.
TRUST IS A REALLY IMPORTANT
ELEMENT FOR BOTH OF THEM.
AND TIME IS ALSO ANOTHER
SIGNIFICANT BARRIER.
EDUCATION, LANGUAGE, SUPPORT FOR
FAMILIES, ALL OF THESE THINGS
THAT YOU ALL HAVE SO ELOQUENTLY
DESCRIBED IN THE LAST TWO DAYS
ARE ENCOMPASSED WITHIN BOTH OF
THESE WORD CLOUDS.
IN SESSION 1, WE HEARD ABOUT THE
COMMUNITY ENGAGEMENT ALLIANCE
CONSTITUTIVE RESOURCE.
THIS WAS, I THINK, A REALLY GOOD
INTRODUCTION TO SOME OF THE
RESOURCES THAT ARE NOW AVAILABLE
FOR DOWN SYNDROME RESEARCH.
AND WHAT IS IMPORTANT IS THAT
THE PROCESS FOR CONSULTATION,
FOR COMMUNITY ENGAGEMENT, CAN BE
DONE WITHIN 30-60 DAYS.
AND WE HOPE THAT MANY OF OUR
INVESTIGATORS WILL TAKE
ADVANTAGE OF THESE RESOURCES,
PARTICULARLY SINCE THEY WERE
DEVELOPED BECAUSE OF SOME OF THE
COVID-RELATED NEEDS OF
INCREASING REPRESENTATION IN OUR
COVID-RELATED RESEARCH STUDIES.
AND THERE IS NO REASON TO
REINVENT THE WHEEL IF SOME OF
THOSE PROCESSES CAN ALSO WORK
FOR OUR DOWN SYNDROME COMMUNITY.
SESSION 2, AND I DON'T HAVE A
CHANCE TO THANK ALL OF THE
STAKEHOLDERS WHO PARTICIPATED IN
THIS VERY VALUABLE PERSPECTIVE
GAINING FROM FAMILIES AND SELF
ADVOCATES AS WELL AS
RESEARCHERS.
AND I DECIDED TO COMBINE THEIR
RESPONSES INTO ONE.
AGAIN, BECAUSE THERE WAS SO MUCH
OVERLAP.
AND I THINK CONSENSUS AROUND
SOME OF THE IMPORTANT ASPECTS OF
THOSE PERSPECTIVES.
MANY WHO HAVE PARTICIPATED IN
RESEARCH HAVE FOUND THEM TO BE
POSITIVE EXPERIENCES; HOWEVER,
THERE IS A LACK OF ACCESS,
PARTICULARLY IN RURAL AND
UNDERSERVED AREAS.
IT'S REALLY IMPORTANT THAT
RESEARCHERS ENGAGE DIRECTLY WITH
THE PARTICIPANT NOT JUST WITH
THE CAREGIVERS OR PARENTS.
COLLABORATIVE RESEARCH MODEL IS
ESSENTIAL.
PARTNERING WITH THE COMMUNITY
RATHER THAN DOING RESEARCH ON
INDIVIDUALS.
WE HEARD TIME AND TIME AGAIN
ABOUT THE IMPORTANCE OF CLEAR
COMMUNICATION AND THAT IF MUST
BE CULTURALLY SENSITIVE, MUST BE
TRANSLATED AND ACCESSIBLE BY THE
INDIVIDUALS WHO ARE UTILIZING
THOSE.
WE ALSO RECOGNIZE THE NEED TO
ACCOMMODATE FAMILIES BUSY LIVES
THROUGH A VARIETY OF MECHANISMS
AND INCLUDING COMPENSATION BUT
THEN WE ALSO HEARD ABOUT
CONCERNS ABOUT TAX LIABILITIES
AND A LOSS OF BENEFITS IF THAT
COMPENSATION EXCEEDS A
PARTICULAR CAP.
AND THAT IS SOMETHING THAT IS A
REAL ISSUE FOR OUR COMMUNITY AS
WELL.
IT'S IMPORTANT TO HAVE MEMBERS
OF THE CLINICAL STUDY TEAM AND
RESEARCHERS WHO LOOK LIKE THE
PARTICIPANTS THEY ARE TRYING TO
RECRUIT.
THERE NEEDS TO BE SUSTAINED
RELATIONSHIPS.
WE NEED TO SUPPORT THE CLINICAL
PROGRAM THAT IS SUPPORT THE
PATIENT AND FAMILY AND THIS JUST
CAME UP BRILLIANTLY IN THE VERY
LAST SESSION WE HEARD FROM
DR. NOEMI SPINAZZI AND FROM
DR. BRIAN CHICOINE AND ELENA
GRIGORENKO AND KATE DOUGHERTY
ABOUT THIS AS WELL.
AND THEN ASKING FAMILIES WHAT
ARE THE MOST IMPORTANT ISSUES
FOR THEM AND NOT ASSUMING FROM
OUR CULTURAL SPER EFFECTIVE THAT
WE KNOW WHAT IS IMPORTANT --
PERSPECTIVE.
THE IMPORTANCE OF COMMUNITY
EFFORTS, CHURCHES, LOCAL, DOWN
SYNDROME AND OTHER
ORGANIZATIONS, HEALTH CARE
PROVIDERS AND OTHERS.
I HEARD LOUD AND CLEAR THAT WE
NEED TO MAKE SURE TO TAKE CARE
OF THE MOTHERS IN THE COMMUNITY
BECAUSE THEY ARE OFTENTIMES THE
ONES WHO ARE PROVIDING THE CARE
AND BRINGING THEIR CHILDREN AND
LOVED ONES TO THEIR VISITS,
CLINIC VISITS AND RESEARCH
VISITS.
AND THEN TAKING THOSE RESEARCH
FINDINGS AND GIVING THEM BACK TO
THE COMMUNITY AND TRANSLATING
THEM INTO AVAILABLE RESOURCES
THAT ARE THEN AVAILABLE FOR
THOSE INDIVIDUALS WHO
PARTICIPATED IN THE RESEARCH.
SO THOSE WERE MY TAKEAWAYS FROM
THE STAKEHOLDER'S PERSPECTIVES.
I HAVE A COUPLE OF HIGHLIGHTS
FROM EACH OF THE PRESENTATIONS.
I'M GOING TO DO A VERY
HIGH-LEVEL VIEW HERE AND NOT GO
INTO DEPTH.
THESE SLIDES WILL BE AVAILABLE
IF YOU WANT TO LOOK AT THEM IN
THE FUTURE AND DIGEST THEM IN
GREATER DETAIL.
WE LEARNED FIRST OF ALL IN
SESSION 3 FROM DR. CORBETT ABOUT
THE IMPORTANCE OF INCLUSION
ACROSS ALL OF NIH RESEARCH.
WE LEARNED ABOUT INCLUSION
ACROSS THE LIFESPAN AS WELL AS
INCLUSION THAT IMPROVES
REPRESENTATION OF WOMEN AND
UNDERREPRESENTED GROUPS.
AND THAT THESE DATA, THE
INDIVIDUAL-LEVEL PARTICIPANT
DATA ARE COLLECTED FROM EVERY
SINGLE NIH-FUNDED STUDY THAT IS
ENROLLING HUMAN SUBJECTS.
SO THAT'S REALLY KEY AND VERY
IMPORTANT.
IN SESSION 3, WE ALSO HEARD FROM
TRACY ROSSER ABOUT THE CRITICAL
IMPORTANCE OF DIVERSITY IN DOWN
SYNDROME RESEARCH AND SOME
MODELS FROM THE ALL OF US
RESEARCH PROGRAM.
AND I THINK DR. ROSSER DID A
GREAT JOB OF DESCRIBING
DIFFERENCES IN MEDICAL OUTCOMES
FOR DIFFERENT RACIAL AND ETHNIC
GROUPS WITH TOO HARD SOME
SPECIFIC CO-OCCURRING CONDITIONS
IN DOWN SYNDROME.
-- SHE PROVIDED A FRAMEWORK
ABOUT INCREASING PARTICIPATION
AND DIVERSITY AND SHARED
RESOURCES AND STRATEGIES THAT
HAD BEEN USED BY THE ALL OF US
RESEARCH PROGRAM THAT IS
ADDRESSING SOME OF THESE NEEDS
AS WELL.
SO, DR. KELLY AND MILLER ALSO
DESCRIBED SOME SPECIFIC EXAMPLES
FROM THEIR RESEARCH WITH THE
FUNDAMENTAL QUESTION OF MAKING
SLEEP STUDIES EASIER FOR
FAMILIES WITH DOWN SYNDROME AND
IS THERE AN OPPORTUNITY TO
UTILIZE STORY BOARDS AND VIDEOS
TO FACILITATE THE CONSENT TO
PROCESS.
AND I THINK SOME OF THE QUOTES
THAT THEY SHARED WERE VERY
IMPACTFUL.
AND DR. MILLER TOLD US ABOUT HOW
WE COULD INVOLVE CHILDREN IN THE
DECISION-MAKING PROCESS BECAUSE
THIS IS REALLY UNDERSTUDIED FOR
THE DOWN SYNDROME POPULATION,
FOR POPULATIONS WITH
INTELLECTUAL DISABILITIES IN
GENERAL.
AND THE MODEL THAT WAS SHARED
WITH US WAS ONE ON
DECISION-MAKING INVOLVEMENT,
INVOLVING THAT CHILD, WHATEVER
STAGE IN DEVELOPMENTAL LEVEL AT
WHATEVER LEVEL IS APPROPRIATE IN
THE DISCUSSION ABOUT
PARTICIPATING IN RESEARCH.
WE TALKED FINALLY TO WRAP UP DAY
1, DR. BROWN TALKED ABOUT SLEEP,
HEALTH DISPARITIES IN DOWN
SYNDROME AND RECOGNIZING THAT
SLEEP DISORDER BREATHING IS
PERHAPS THE MOST REPORTED SLEEP
DISORDER IN PEOPLE WITH DOWN
SYNDROME AND IT'S EXACERBATED
FROM UNDERREPRESENTED GROUPS.
THE GOOD NEWS IS THAT THE NUMBER
OF PUBLICATIONS AROUND THIS
QUESTION ARE INCREASING.
THERE STILL REMAINS SIGNIFICANT
RESEARCH GAP THAT IS NEED TO BE
ADDRESSED SO THAT WE CAN FULLY
UNDERSTAND THIS PARTICULAR
CO-OCCURRING CONDITION AND ITS
IMPACT ON THE DOWN SYNDROME
POPULATION.
SO TODAY, WE OPENED OUR WORKSHOP
TALKING ABOUT ENSURING
REPRESENTATION IN THE DOWN
SYNDROME SCIENTIFIC WORKFORCE
AND REALLY WITH A FOCUS ON
INVESTIGATORS AND TRAINEES.
AND SO, DR. BARRED ENRI MINDED
EVERYBODY OF THE GOALS OF THE
INCLUDE EFFORT AND ONE OF OUR
CONGRESSIONALLY-MANDATED
DIRECTIVES IS TO EXPAND THE
PIPELINE OF NEW AND EARLY-STAGE
INVESTIGATORS.
WE HAVE SUPPORTED IN THE MANY
NEW PROJECTS UNDER INCLUDE, OVER
THIRT I TRAINEES AND WE ARE
WORKING TO INCREASE THE
DIVERSITY OF THOSE TRAINEES AS
WELL.
AND REMINDER TO ANY OF YOU WHO
ARE INVESTIGATORS IN THE DOWN
SYNDROME SPACE, OUR NEWEST
FUNDING OPPORTUNITY
ANNOUNCEMENTS HAVE AN EMPHASIS
ON ENCOURAGING DIVERSE
RECRUITMENT, THEY ALLOW FOREIGN
APPLICANTS AND THEY ENCOURAGE
THE DIVERSITY OF INVESTIGATORS
AS WELL AS SUBJECTS AS A
PRIORITY.
DR. LEI TALKED TO US ABOUT THE
CHIEF OFFICER FOR SCIENTIFIC
WORKFORCE DIVERSITY AT NIH AND
WHAT IT IS DOING TO HELP ENHANCE
OUR SCIENTIFIC WORKFORCE IN
GENERAL ACROSS NIH.
AND THE REAL IMPORTANCE OF
DIVERSE PERSPECTIVES.
AND I LOVE THIS IMAGE OF THE
ELEPHANT AND HOW DIVERSE
INDIVIDUALS ARE SEEING IT AND
EXPERIENCING DIFFERENT ASPECTS
OF THE MEDICAL PROBLEM.
SHE REMINDED US OF THE
IMPORTANCE OF RECRUITMENT,
DEVELOPMENT AND REWARDING OF
THOSE NEW FACULTY MEMBERS WHO
MAY BE RECRUITED AND RETENTION
OF DIVERSE FACULTY MEMBERS SO
THAT THEY STAY IN THE SCIENTIFIC
RESEARCH COMMUNITY.
AND THEN SOME VERY SPECIFIC
IDEAS ABOUT WAYS IN WHICH THERE
ARE RESOURCES TO HELP WITH
DIVERSE RECRUITMENT OF
INVESTIGATORS.
WE ALSO TALKED ABOUT, WHAT I
WOULD CALL, KIND OF A ROADMAP
FROM MICHELLE JONES-LONDON BASED
ON HER EXPERIENCE RUNNING
DIVERSITY PROGRAMS FOR
NEUROSCIENCE RESEARCHERS AND
THAT DIAGRAM IS FILLED WITH NIH
ACRONYMS AND I KNOW IT IS
OVERWHELMING FOR MOST OF YOU BUT
FOR THOSE OF US IN THE INCLUDE
PROGRAM, WE ARE THINKING, HOLY
MOLY, WE HAVE SO MUCH MORE WE
CAN DO TO HELP SUPPORT DIVERSE
RECRUITMENT INTO THE DOWN
SYNDROME RESEARCH SPACE.
AND I LOVE THIS QUOTE THAT SHE
PROVIDED ON HER FINAL SLIDE,
DIVERSITY IS NOT A PROBLEM, IT'S
THE SOLUTION.
DR. JIANHUA WU GAVE US A GREAT
PERSONAL PERSPECTIVE ON HIS
EXPERIENCES AS AN AWARD
WIN-WINNING RESEARCHER WHO
EMBRACES MENTORING DIVERSE
STUDENTS.
HE PROVIDED GREAT NUGGETS,
MUTUAL RESPECT, REALLY TRYING TO
HELP HIS STUDENTS REACH THEIR
DREAM CAREER GOALS.
AND EVEN IN INCLUDING AN
INTERNATIONAL OUTREACH COMPONENT
AND BOY I WOULD LOVE TO BE ONE
OF THOSE STUDENTS DR. JIANHUA WU
AND GET A CHANCE TO TRAVEL TO
CHINA WITH YOU FOR SOME OF YOUR
EXPERIENCES.
IN SESSION 5, WE HEARD FROM
DR. CAREY GLEASON TALKING ABOUT
ENHANCING PARTICIPANT DEARESTY
AND HER EXPERIENCES WORKING WITH
THE ONIDA DRY -- DIVERSITY -- IN
WISCONSIN.
SHE TOLD US OR EXPLAINED TO US
HOW IMPORTANT THE LANGUAGE THAT
WE USE IS.
AND USING UNDERREPRESENTED GROUP
RATHER THAN MINORITY, WHICH CAN
BE PEJORATIVE HAVE NEGATIVE
CONNOTATIONS.
THE VALUES THAT WE BRING TO THE
TABLE AS RESEARCHERS, AS
PARENTS, AS PARTICIPANTS, CAN BE
VERY DIFFERENT AND WHEN THOSE
VALUES ARE NOT NECESSARILY
ALIGNED, THERE IS THE POTENTIAL
FOR MISUNDERSTANDING.
SO, THE COMMUNITY-BASED
PARTICIPATORY RESEARCH
ENGAGEMENT FRAMEWORK -- THAT'S A
MOUTHFUL -- THAT FRAMEWORK SHE
SHARED WITH US IS REALLY
IMPORTANT.
GIVE FIRST, BUILD ADVOCATES,
THAT LEADS TO RECIPROCITY AND
CREATING THE ALL-IMPORTANT
RELATIONSHIPS.
DR. HARTLEY WHO WAS PITCH
HITTING FOR DR. ANNIE COHEN,
TOLD US ABOUT THE ALZHEIMER'S
BIOMARKERS CONSORTIUM FOR DOWN
SYNDROME AND ITS PARTNERSHIPS
WITH ITS COMMUNITY ADVISORY
BOARD WITH THE NDSS, WITH
WORKING GROUPS AND OTHERS.
WE HEARD FROM A NUMBER OF
COMMUNITY PARTICIPANTS AND I
LOVE THE QUOTE FROM MARIA WHO
SAID, IT'S IMPORTANT TO HAVE ALL
THOSE LETTERS AFTER YOUR NAME
BUT IT'S MORE CRITICAL THAT YOU
BE ABLE TO TALK TO THE MOMS.
AND I THINK THAT WAS REALLY
GROUNDING FOR ME AT LEAST, AND
IMPORTANT TO HEAR.
AND SHOWING UP.
AGAIN, AND AGAIN, TO LET THE
COMMUNITY KNOW THAT YOU'RE
SERIOUS AND YOU CARE ABOUT THEM
IS REALLY CRITICAL.
A WILT WIT TALKED ABOUT SETTING
NICOLE SHIREE WHITMOYER BUT
MAINTAINING FLEXIBILITY AND
GETTING THE WARM HANDOFF FROM
SOME OF HER COMMUNITY LIAISONS
TO HELP FACILITATE PARTICIPATION
IN RESEARCH.
AND DANNY, BRILLIANTLY GAVE US
THIS POEM THAT YOU SHARED WITH
US FOR WHICH WE ARE GRATEFUL.
AND THE CTSA TEAM FROM THE
RECRUITMENT INNOVATION CENTER
HELPED US IDENTIFY SOME TOOLS
AND RESOURCES THAT I THINK ARE
GOING TO BE REALLY VALUABLE FOR
INCREASING DIVERSITY WITHIN OUR
DOWN SYNDROME STUDIES.
THE COMMUNITY ENGAGEMENT STUDIOS
AND THE RECRUITMENT AND
RETENTION MATERIALS, THE CONSENT
FORM IS JUST NOT ENOUGH AND
REALLY DEVELOPING THE MESSAGES
IN A WAY THAT IS GOING TO BE
RESONATING WITH THE COMMUNITY
AND ENGAGING THE COMMUNITY IN
THE DEVELOPMENT OF THOSE
MATERIALS IS KEY.
AND THANK YOU TO JANICE TAKE
BEING YOUR ADULT DISABILITY
MEDICAL HEALTH CARE MODEL AND
THE IMPORTANCE OF COMBINING
PRIMARY CARE WITH CONSTITUTIVE
SERVICES.
THE IMPORTANCE OF TRANSITIONS
AND THE OPPORTUNITIES THAT THOSE
TRANSITIONS PROVIDE FOR ENGAGING
IN RESEARCH.
THE IMPORTANCE OF THE TEAM
APPROACH AND INCLUDING PEOPLE IN
THE LEAST RESTRICTIVE
ENVIRONMENTS.
AND THEN FINALLY, OUR LAST
SESSION, SESSION 6 ABOUT
COMMUNITY ENGAGEMENT.
THANK YOU KATE DOUGHERTY FOR
TALKING TO US ABOUT RURAL LIVING
AND HOW TO SHOE A HORSE.
I LOVE THE MESSAGE OF
UNDERSTANDING THE POWER OF
EXPOSURE AND HOW THAT REDUCES
STIGMA.
THE IMPORTANCE OF EDUCATION
FOCUSING ON THE POSSIBILITIES
AND RESULTING IN EMPOWERMENT AND
CHANGE.
DR. BRIAN CHICOINE, YOU'RE MODEL
WAS PROVIDING HEALTH CARE TO
ADULTS DOWN SYNDROME WITH OVER
6000 ADULTS WITH DOWN SYNDROME
YOU PROVIDED CARE FOR IS
INSPIRATIONAL AND YOU HAVE DONE
JUST AN AMAZING JOB OF OUTREACH
THAT I THINK PROVIDES A MODEL OF
CARE IN A WAY FORWARD TO HELP
INCREASE THE DIVERSITY OF OUR
PATIENT POPULATIONS,
PARTICULARLY THOSE THAT WE WANT
TO ASK TO PARTICIPATE IN
RESEARCH.
AND THEN FINALLY, DR. ELENA
GRIGORENKO AND YOUR TEAM TALKING
ABOUT EPIDEMIOLOGIC STUDIES IN
AFRICA THAT ARE GOING TO BE THE
FIRST TO GET STARTED IN THIS
COMMUNITY THAT WE TRULY HAVE
VERY LIMITED KNOWLEDGE ABOUT.
AND INCLUDING HERE YOUR EIGHT
CONCLUSIONS IN TERMS OF WORKING
WITH SPECIAL SAMPLES AND AGAIN
ENGAGING WITH THE LOCAL
COMMUNITY.
I THINK THAT IS REALLY KEY AND
YOU ELOQUENTLY DESCRIBED THAT
FOR ALL OF US IN YOUR PAST
EXPERIENCES.
AND FINALLY DR. NOEMI SPINAZZI.
I NAMED THE TITLE OF YOUR TALK,
IT STARTS WITH TRUST.
AND I LOVE THE FACT THAT YOU
QUOTED POP CULTURE WITH THE 99
PROBLEMS AND RESEARCH ISN'T ONE
OF THEM.
BUT I THINK THAT REALLY BRINGING
HOME TO US WHAT THE ISSUES ARE
FOR MANY OF OUR UNDERREPRESENTED
GROUPS AND HOW RESEARCH IS NOT
THE FIRST THING THEY ARE
THINKING ABOUT BY ANY STRETCH OF
THE IMAGINATION.
AND I THINK YOU ALSO VERY
CLEARLY ARTICULATED THE
IMPORTANCE OF EMBEDDING RESEARCH
WITHIN THE CLINICAL SETTING.
IT'S A TWO-WAY STREET.
RESEARCH WITHIN THE MEDICAL
HOME.
AND MAKING SURE THAT THERE IS A
GIVE-AND-TAKE IN BOTH
DIRECTIONS.
SO, THIS I THINK IS MY TAKE
AWAY.
THE GOOD NEWS, PEOPLE WITH DOWN
SYNDROME ARE LIVING LONGER DUE
TO ADVANCES IN MEDICAL CARE AND
RESEARCH.
THE BAD NEWS, THERE ARE
SIGNIFICANT HEALTH DISPARITIES
THAT EXIST WITH REGARD TO MANY
OF THE CO-OCCURRING CONDITIONS
AND CERTAINLY WITH REGARD TO
LIFE EXPECTANCY.
THE OPPORTUNITY IS THAT WITH THE
NEW INCLUDE PROJECT AND FUNDING,
WE POTENTIALLY HAVE THE
RESOURCES TO ADDRESS THESE
DISPARITIES SO THAT THE
CHALLENGE FOR US IS TO IDENTIFY
THE BEST STRATEGIES THAT WILL
INCREASE DIVERSITY AMONG
RESEARCH PARTICIPANTS AND
RESEARCHERS AND TAKE ALL OF THE
WONDERFUL IDEAS AND FEEDBACK
FROM THIS WORKSHOP, INCORPORATE
THEM INTO OUR RESEARCH TO
IMPROVE QUALITY OF LIFE FOR ALL
PEOPLE WITH DOWN SYNDROME AND
RECOGNIZING OF COURSE THAT WE
ARE PARTNERS IN THIS JOURNEY.
AND I JUST WANT TO LEAVE YOU
WITH ONE MORE OPPORTUNITY TO
PARTICIPATE IN AN INCLUDE
INVESTIGATOR ANNUAL WORKSHOP
WHERE INVESTIGATORS WILL BE
TALKING ABOUT THEIR RESEARCH IN
DOWN SYNDROME.
THIS WILL BE HELD OCTOBER 12 --
SORRY I FORGOT THE PUT THE DATE
ON THIS SLIDE.
IT'S A VIRTUAL WORKSHOP AND FREE
AND OPEN TO EVERYBODY.
WE CAN ALSO PUT THIS LINK IN THE
CHAT IF NEED BE.
SIGN UP FOR THAT IF YOU'RE
INTERESTED IN LEARNING MORE
ABOUT WHAT INCLUDE INVESTIGATORS
ARE STUDYING.
THANK YOU ALL SO, SO MUCH.
>> AND THAT CONCLUDES OUR TWO
HOT DAYS OF THIS VIRTUAL
WORKSHOP, ORGANIZED BY INCLUDE.
A HUGE SHOUT OUT TO ALL OF THE
PLANNING COMMITTEE, THE
SPEAKERS, ATTENDEES, OUR
INTERPRETERS AND TO ALL OF YOU.
THANK YOU AND HAVE A GREAT REST
OF YOUR WEEK.