THANK YOU FOR JOINING US -- FOR
DAY TWO.
OF THE ADVANCING THE SCIENCE OF
COMMUNITY ENGAGED HEALTH
DISPARITIES RESEARCH VIRTUAL
WORKSHOP.
WE WANTED TO GO OVER A COUPLE OF
BRIEF HOUSEKEEPING REMINDERS.
MAY I HAVE THE NEXT SLIDE,
PLEASE.
I WANT TO REMIND YOU THAT THIS
WORKSHOP IS BEING RECORDED AND
PLEASE STAY MUTED WITH YOUR
CAMERA OFF UNLESS YOU ARE
SPEAKING AND ALSO YOU MAY TYPE
YOUR QUESTIONS IN THE Q&A BOX IF
YOU HAVE QUESTIONS FOR OUR
SPEAKERS.
THANK YOU.
>>THANK YOU SO MUCH.
WELCOME EVERYONE TO THE SECOND
AND FINAL DAY OF OUR WORKSHOP.
MY NAME IS MALIHA ILIAS I'M A
PROGRAM DIRECTOR.
I A LOOKING WITH DR. FERNANDO
BRUNO CHAIRED THE PLANNING
COMMITTEE FOR THIS WORKSHOP.
I WOULD LIKE TO THANK EVERYONE
WHO MADE THIS WORKSHOP POSSIBLE.
AS WELL AS THE NATIONAL
INSTITUTE OF AGING, OUR
DEDICATED PLANNING COMMITTEE --
OUR HARD WORKING SUPPORT TEAM
AND OUR AV SUPPORT.
THANK YOU ALL.
FOR THOSE WHO ARE ABLE TO ATTEND
DAY ONE YESTERDAY CAN HOPEFULLY
ATTEST THAT WE HAD SOME GREAT
DISCUSSIONS AROUND LESSONS
LEARNED, PLANNING FOR AND
ASSESSING MEANINGFUL
BI-DIRECTIONAL COMMUNITY
ENGAGEMENT.
WE'RE LEARNING SO MUCH FROM THIS
WORKSHOP AND SOME LESSONS THAT
WE LEARNED BEFORE THE WORKSHOP.
SEVERAL PANELISTS AND SPEAKERS
POINTED OUT THAT THE TITLE
SHOULD HAVE BEEN ADVANCING THE
SCIENCE OF COMMUNITY ENGAGED
HEALTH EQUITIES WORKSHOP
RESEARCH.
AS THEY SAID WE SHOULD ASPIRE TO
HIGHER GOALS AND ONLY THEN BE
ABLE TO COME CLOSE TO ACHIEVING
THEM SO WE LOOK FORWARD TO
LEARNING MORE.
WE HAVE AN A AMAZING DAY TWO
PLANNED.
WE HAVE THREE SESSIONS STARTED
WITH LOOKING AT HEALTH EQUITY
RESEARCH FROM A GLOBAL LENS.
AND ENDING WITH A SESSION ON
ADVANCING INCLUSIVE EXCELLENCE
IN COMMUNITY ENGAGED HEALTH
EQUITY RESEARCH.
ALL THREE HAVE AN IMPRESSIVE
LINE UP.
DR. GEORGE MENSAH WILL PROVIDE
SOME WELCOME REMARKS.
AS ALWAYS PLEASE PUT YOUR
QUESTIONS IN THE Q&A BOX.
ONLY THE PANELISTS AND SPEAKERS
WILL BE ABLE TO UNMUTE
THEMSELVES AND TURN ON CAMERAS.
WE REQUEST THAT ALL STAY ON
CAMERA DURING THE COURSE OF
THEIR DISCUSSION.
WE WILL NOT BE INTRODUCING OUR
SPEAKERS AND PANELISTS.
REFER TO THE HANDBOOK FOR
DETAILED BIOS.
I WILL ANNOUNCE TRANSITIONS
THROUGHOUT THE DAY AND WITH THAT
I WOULD LIKE TO HAND THE MIC TO
DR. GEORGE MENSAH.
TAKE IT AWAY, GEORGE.
>>THANK YOU VERY MUCH.
YOU ALWAYS GIVE SUCH CLEAR
INSTRUCTIONS.
SO THANK YOU AND I'M GOING TO
FOLLOW YOUR INSTRUCTIONS.
LADIES AND GENTLEMEN, MY NAME IS
GEORGE MENSAH AND IT'S REAL
PLEASURE TO BE WITH YOU THIS
MORNING.
ON BEHALF OF THE NATIONAL HEART,
LUNG AND BLOOD INSTITUTE.
I WANT TO WELCOME YOU TO THIS
SECOND DAY OF OUR WORKSHOP.
MAYBE BECAUSE DR. ILIAS
MENTIONED I SHOULD TOUCH ON
THIS.
SOME OF YOU KNOW BY
CONGRESSIONAL ACT WE HAVE A
NATIONAL INSTITUTE FOR MINORITY
HEALTH AND HEALTH DISPARITIES SO
WE'RE REQUIRED TO USE THE
DISPARITIES WORD AND -- WE'LL
HAVE A LONG LECTURE ON WHY THAT
IS IMPORTANT BUT WE COMPLETELY
AGREE WITH THOSE OF YOU WHO HAD
THE COMMENT.
HEALTH EQUITY IS THE
ASPIRATIONAL GOAL.
WE'RE DELIGHTED THAT YOU'VE
CHOSEN TO BE WITH US YESTERDAY
AND THIS MORNING.
AND I REALLY WANT TO THANK YOU
FOR YOUR PARTICIPATION AND FOR
YOUR INTEREST IN INSTITUTES
MISSION AND ESPECIALLY IN THIS
WORKSHOP.
I SHOULD MENTION THAT OUR
WORKSHOPS CONSTITUTE A VERY
IMPORTANT TOOL FOR US IN
ADVANCING THE SCIENCE AND
RESEARCH WE SUPPORT IN THE EXTRA
MURAL ENVIRONMENT.
MANY OF OUR ACTIVITIES AND
INITIATIVES HAVE HAD THE ORIGINS
IN NHLBI WORKSHOPS LIKE THIS
ONE.
BUT IT'S ALSO IMPORTANT TO
EMPHASIZE THAT DEVELOPING
INITIATIVES AND DEVELOPING
FUNDING OPPORTUNITY ANNOUNCEMENT
IS NOT NECESSARILY THE GOAL OF
OUR WORK SHOPS.
THE CRITICAL COMPONENT OF THE
GOALS AND OBJECTIVES IS THE GAPS
IN OUR RESEARCH AND THE UNIQUE
OPPORTUNITIES FOR THE FUTURE
THAT YOU HELP US IDENTIFY THAT
IS REALLY CRUCIAL AS WE CHART
THE FUTURE.
SO PLEASE AS YOU GO THROUGH THE
SECOND DAY THE UNIQUE
OPPORTUNITIES THAT YOU SEE AND
THE GAPS THAT YOU THINK NHLBI'S
LEADERSHIP AND ALL OF NIH'S
LEADERSHIP CAN PLAY.
THAT IS WHAT WE WANT TO HEAR
FROM YOU.
AND WE COULDN'T HAVE A BETTER
KEYNOTE SPEAKER THAN DR. LISA
COOPER.
AS MALIHA SAID WE INTEND TO BE
BRIEF IN OUR DESCRIPTIONS SO
EVEN FOR DR. COOPER I'M GOING TO
BE BRIEF.
SHE IS VERY WELL-KNOWN TO THIS
AUDIENCE AND OF COURSE DETAILS
OF HER ACCOMPLISHMENTS ARE IN
THE PARTICIPANT BOOKLET THAT
DR. ILIAS MENTIONED.
LET ME MENTION TWO OR THREE
BECAUSE IT'S IMPORTANT FOR THIS
WORKSHOP.
DR. COOPER SERVES AS THE
DIRECTOR OF THE HOPKINS CENTER
FOR HEALTH EQUITY AND URBAN
HEALTH INSTITUTE.
SO THE ASPIRATIONAL GOAL OF
EQUITY SHE IS RIGHT IN THE
CENTER OF IT.
BUT SHE IS ALSO ONE OF THE VERY
FEW PEOPLE I KNOW WHO HAVE TWO
SEPARATE ENDOWED PROFESSOR
SHIPS.
SHE HAS THE BLOOMBERG PROFESSOR
SHIP AT HOPKINS AND ALSO IN THE
DIVISION OF GENERAL INTERNAL
MEDICINE.
SO WHETHER YOU'RE TALKING ABOUT
NURSE AND PRIMARY CARE AND
PUBLIC HEALTH SHE IS REALLY AT
THE CENTER OF ALL OF IT.
AND IT'S A REAL PLEASURE.
MOST RECENTLY JUST LAST WEEK SHE
RECEIVED THE AMERICAN
ASSOCIATION DISTINGUISHED
SCIENTIST AWARD.
SO IT'S A REAL PLEASURE FOR US
TO WELCOME DR. LISA COOPER WHO'S
GOING TO GIVE OUR KEYNOTE
LECTURE ON CLOSING THE GAP
BETWEEN KNOWLEDGE AND HEALTH
EQUITY AND SHARE SOME FUTURE
DIRECTIONS FOR COMMUNITY ENGAGED
HEALTH DISPARITIES RESEARCH.
PLEASE JOIN ME IN WELCOMING
DR. LISA COOPER.
LISA, OVER TO YOU
>>THANK YOU.
THANK YOU SO MUCH FOR THAT VERY
KIND INTRODUCTION DR. MENSAH.
AND THANK YOU TO ALL OF THE
CONVERSATION ORGANIZERS FOR
INVITING ME TO JOIN YOU TODAY.
IT'S A PLEASURE FOR ME TO TALK
TO YOU TODAY ABOUT A TOPIC THAT
IS CLOSE TO MY HEART.
WHICH IS COMMUNITY ENGAGED
RESEARCH TO ADDRESS HEALTH
EQUITY.
THESE ARE MY DISCLOSURES.
MOSTLY GRANTS AND A FEW
CONSULTATION FEES.
NEXT SLIDE.
SO I WANT TO START OUT BY
TALKING ABOUT THIS GAP THAT WE
HAVE.
BETWEEN KNOWLEDGE AND EQUITY.
AND WHAT WE KNOW IS THAT OVER
THE PAST FEW DECADES THERE HAVE
BEEN AMAZING BREAKTHROUGHS IN
SCIENCE YET THE BENEFITS HAVE
NOT BEEN FULLY REALIZED IN TERMS
OF THE HEALTH OF OUR POPULATION
AND ITS MOST CONCERNING THAT THE
GROUPS THAT HAVE EXPERIENCED
SOCIAL AND ECONOMIC
MARGINALIZATION ARE LESS LIKELY
TO BENEFIT FROM THESE
DISCOVERIES.
SO ALTHOUGH WE STILL NEED MORE
KNOWLEDGE ABOUT THE APPROACHES
AND BASIC BIOMEDICAL THERAPIES
WE HAVE AN OPPORTUNITY RIGHT NOW
TO BRIDGE THE GAP BETWEEN WHAT
WE KNOW AND OUR PROGRESS IN
ADDRESSING HEALTH EQUITY.
AND TO BRIDGE THE GAP IN
IMPLEMENTATION WE NEED TO USE
TRANSDISCIPLINARY RESEARCH ALONG
WITH INITIATIVES TO ENHANCE THE
EFFECTIVENESS AND THE
SUSTAINABILITY OF EVIDENCE BASED
APPROACHES.
BUT FOUNDATIONAL TO ALL OF THESE
EFFORTS IS BETTER ENGAGEMENT
WITH THE COMMUNITIES THAT WE
SERVE ESPECIALLY THOSE THAT
EXPERIENCE HEALTH DISPARITIES.
SO I WANTED TO START OUT WITH
FIVE PROPOSED STEPS THAT WE CAN
ENGAGE IN AS WE MOVE TOWARDS THE
FUTURE OF A COMMUNITY ENGAGED
RESEARCH TO ADVANCE HEALTH
EQUITY.
THE FIRST NUMBER THREE BUILDINGY
FOR COMMUNITY ENGAGED RESEARCH.
FOUR, FOSTERING LOCAL AND GLOBAL
BI-DIRECTIONAL LEARNING AND
FIVE, MOVING FROM ENGAGEMENT.
AND EMPOWERMENT TO EQUITY.
LET'S START OUT WITH OUR FIRST
STEP.
OPERATIONALLING.
WHAT DOES IT MEAN?
IT MEANS TO PUT IT INTO USE BY
DEFINITE FINDING THE RELEVANT
VARIABLES.
REMOVING ANY AMBIGUITY SO THERE
IS CLARITY AROUND WHAT ACTIONS
NEED TO BE TAKEN AND ALSO IT
MAKES INDICATORS MEASURABLE.
SO WE WANT TO DO MORE OF THAT AS
WE MOVE FORWARD IN COMMUNITY
ENGAGED RESEARCH.
ONE OF THE FIRST STEPS ALTHOUGH
THERE HAVE BEEN LOTS OF PEOPLE
WORKING IN THIS SPACE BUT THE
MOST RECENT SIGNIFICANT EFFORT
AROUND OPERATIONALIZING
COMMUNITY ENGAGEMENT COMES FROM
THIS MODEL THAT WAS PUT FORWARD
BY THE NATIONAL ACADEMY OF
MEDICINE ORGANIZING COMMITTEE
FOR ASSESSING MEANINGFUL
COMMUNITY ENGAGEMENT OF HEALTH
AND POLICIES.
SO THIS IS A WONDERFUL
CONCEPTUAL MODEL WHICH CENTERS
COMMUNITY ENGAGEMENT.
AND COREN GAUGEMENT PRINCIPLES.
* AND THEN SORT OF RADIATE OUT
THE DOMAINS.
SO I THINK THIS IS AN EXCELLENT
BEGINNING.
TO OPERATIONALIZING BECAUSE WE
CANNOT DO IT IF WE DON'T KNOW
EXACTLY WHAT WE MEAN AND THEN WE
CANNOT MEASURE HOW WELL WE'RE
DOING IT AND WE CANNOT LINK IT
TO ANY IMPORTANT OUTCOME IF WE
DON'T HAVE IT WELL
OPERATIONALIZED.
SO THIS IS A HELPFUL MODEL.
IT SHOWS THAT IF WE ENGAGE IN
THE CORE PRINCIPLES OF COMMUNITY
ENGAGEMENT THAT WHAT WE SHOULD
BE AIMING FOR IS STRENGTHENED
PARTNERSHIPS AND ALLIANCES,
EXPANDED KNOWLEDGE, IMPROVED
HEALTH CARE AND POLICIES AND
THEN THRIVING COMMUNITIES.
AND SO WE CAN REACH HEALTH
EQUITY THROUGH TRANSFORMING
SYSTEMS.
NOT JUST CHANGES IN INDIVIDUALS
BUT THIS COMMUNITIES AND
SYSTEMS.
SO THESE ARE THE IMPORTANT
DOMAINS.
A FEW EXAMPLES OF HOW WE REALLY
-- CODIFY AND OPERATE RACIAL
EYES WHAT WE MEAN.
*.
THESE ARE SOME PRINCIPLES THAT
HAVE BEEN DESCRIBED BY A NUMBER
OF PEOPLE IN THE FIELD.
MELODY GOODMAN AND COOL EAGLES
HAVE DONE A LOT OF WORK
DEVELOPING MEASURES AND
INDICATORS RELATING TO COMMUNITY
ENGAGEMENT.
THIS ONE SPELLS OUT THE 8
ENGAGEMENT PRINCIPLES AND YOU
CAN SEE WHERE FOR EXAMPLE, THERE
IS A FOCUS ON COMMUNITY
PERSPECTIVES AND DETERMINANTS OF
HEALTH AS A PRESCRIPTION.
WHAT WE'VE DONE IS REALLY THINK
ABOUT THESE KEY QUESTIONS AS
THEY ARE TRYING TO EMBODY THESE
PRINCIPLES.
THIS GUIDE IS SOMETHING THAT WE
GAVE OUR COMMUNITY ENGAGED
RESEARCHERS TO USE AND ALSO GAVE
PEOPLE WHO WE ASSIGN TO THEIR
TEAMS AS COMMUNITY ENGAGEMENT
COACHES AS THEY USE TO OBSERVE
THEIR INTERACTIONS WITH
COMMUNITY MEMBERS AND OTHER
STAKEHOLDERS.
DO THE COMMUNITY MEMBERS HAVE AN
OPPORTUNITY TO DISCUSS THEIR
VIEWPOINTS AND EXPRESS CONCERNS
THAT IMPACT HEALTH IN THEIR
COMMUNITY ORGANIZATION?
THAT IS JUST ONE EXAMPLE.
YOU CAN SEE THAT WHAT WE TRY TO
DO IS HAVE PEOPLE THINK ABOUT
SPECIFIC BEHAVIORS THAT THEY
WOULD ENGAGE IN THAT WOULD
DEMONSTRATE THAT THEY WERE
EMBRACING THE PRINCIPLE.
YOU CAN SEE THE PRINCIPLES AND
PARTNERS INPUT IS VITAL.
THESE ARE THE OTHER PRINCIPLES
BUILDING ON STRENGTHS AND
RESOURCES WITHIN THE COMMUNITY.
FACILITATING EQUITABLE
PARTNERSHIPS.
IN INVOLVING ALL PARTNERS AND
BUILDING AND MAINTAINING TRUST
IN THE PARTNERSHIP.
SO YOU CAN SEE WHERE IT'S
WONDERFUL TO HAVE THESE
PRINCIPLES BUT SOME OF US HAVE
BEEN WORKING IN THIS FIELD FOR
A LONG TIME AND WE FEEL LIKE WE
KNOW WHAT WE MEAN.
BUT AS WE TRY TO EXPLAIN TO
OTHERS WHAT IT IS WE'RE DOING OR
TO TRAIN OTHER PEOPLE HOW CAN WE
TELL THEM WHAT IT LOOKS LIKE
WHEN WE'RE EMBRACING THESE
PRINCIPLES.
SO HOPEFULLY THIS GIVES YOU AN
IDEA AS WE MOVE IN THE FUTURE.
SO THIS SLIDE IS AN EXAMPLE OF A
STUDY THAT WE HAVE BEEN DOING AT
THE CENTER FOR HEALTH EQUITY AT
JOHNS HOPKINS WHERE WE TOOK SOME
OF THE INDICATORS AND WE
MEASURED THEM.
SO WE ACTUALLY DID A LOWS
SECTIONAL SURVEY STUDY BETWEEN
DECEMBER 2019 AND JUNE OF 2020
WHERE WE SURVEYED OUR COMMUNITY
AND ACADEMIC PARTNERS IN OUR
COMMUNITY ACADEMIC PARTNERSHIP.
WE MEASURED DEMOGRAPHICS, HEALTH
EQUITY WORK EXPERIENCES AND WE
USED SOME OF THE MEASURE THAT
HAVE BEEN DEVELOPED TO QUANTIFY
THESE COMMUNITY ENGAGEMENT
PRINCIPLES.
AND PARTNERSHIP PROCESSES.
AND WE ALSO MEASURED THE SOCIAL
NETWORKS AMONG THE MEMBERS.
AND WHAT WE FOUND THESE ARE
PRELIMINARY RESULTS NOT
PUBLISHED YET BUT COMMUNITY
MEMBERS RATED THE QUALITY OF
COMMUNITY ENGAGEMENT.
AND SOME DOMAINS, SYNERGY,
LEADERSHIP, ADMINISTRATION AND
OVER-OVER -- ALL SATISFACTION.
DECISION RATING WAS RATED LESS
THAN 3.5.
SO THIS GIVES US AN IDEA OF
SOMETHING THAT WE NEED TO WORK
ON.
AND WE ALSO LEARNED THAT
PARTICIPANTS EXPRESSED THE
DESIRE FOR MORE ENGAGEMENT WITH
DIVERSE COMMUNITIES.
THAT WE DIDN'T HAVE ADEQUATE
REPRESENTATION.
AND THAT THEY ALSO FELT THAT WE
NEEDED TO MOVE BEYOND OUR
REGIONAL AREA AND INTEREST A
LITTLING MORE WITH NATIONAL
ORGANIZATIONS.
SO THIS GIVES YOU AN IDEA OF
WHAT THE FUTURE OF COMMUNITY
ENGAGEMENT.
MIGHT LOOK LIKE.
STRONGER DECISION MAKING.
MORE ENGAGEMENT.
MORE DIVERSE ENGAGEMENT.
MORE OPPORTUNITIES FOR
OPPORTUNITIES ACROSS THE
NATIONAL SPECTRUM AND MAYBE EVEN
BEYOND.
SO ANOTHER WAY OF CODIFYING AN
OPERATE RACIALING ENGAGEMENT *
WE NEED TO THINK ABOUT
INSTITUTIONAL PRACTICES AND
POLICIES.
SO THESE PRACTICES ARE ADAPTED
FROM THE CARNEGIE CLASSIFICATION
AND WE USE THESE TO INFORM A
PROCESS AT JOHNS HOPKINS WHERE I
WAS ASKED TO LEAD A COMMUNITY
ENGAGEMENT COMMITTEE THAT WAS
PART OF A ROAD MAP FOR DIVERSITY
AND INCLUSION.
ONE OF THE THINGS THAT WE SAID
IS THAT IT'S IMPORTANT TO
INSTITUTIONALIZE THE
INSTITUTIONS COMMITMENT TO
COMMUNITY ENGAGEMENT.
THAT MEANS HAVING A MISSION
STATEMENT THAT INCLUDES
COMMUNITY ENGAGEMENT AS A
PRINCIPLE AND AS PART OF ONE'S
MISSION.
HAVING GUIDING PRINCIPLES.
HAVING COMMON DEFINITIONS SO IT
BECOMES PART OF THE WAY THE
INSTITUTION DOES ITS WORK
WHETHER THROUGH RESEARCH OR
TEACHING OR THROUGH SERVICE.
THE SECOND THINGS IS THAT THE
INSTITUTION NEEDS TO HAVE A
FORMAL INFRASTRUCTURE.
IT'S NOT JUST TO SAY YEAH
COMMUNITY ENGAGEMENT IS
IMPORTANT TO US.
DO YOU HAVE AN OFFICE THAT IS
RESPONSIBLE FOR COORDINATION OF
ACTIVITIES.
ARE THERE TRANSPARENT
STRATEGIES.
WE ALSO SAID THERE NEEDS TO BE
AN INSTITUTION WIDE FRAMEWORK
FOR RESOURCES FOR TRAINING AND
PROFESSIONAL DEVELOPMENT FOR
FACULTY AND STAFF AND
INSTITUTIONAL LEADERS.
SO WHAT OPPORTUNITIES ARE THERE
AVAILABLE AND FOR WHOM AND WHICH
DOMAINS AND ARE THEY SERVICE?
ARE THEY RESEARCH?
ARE THEY TEACHING AND LEARNING
OPPORTUNITIES?
AND THEN WE ALSO SAID THAT WE
NEED TO IMPROVE STUDENT
COMPETENCIES AND STUDENT
ENGAGEMENT THROUGH GREATER
EXPOSURE TO HIGH QUALITY
RESEARCH AND PRACTICE AND
SERVICE.
SO THAT LOOKS LIKE PROVIDING
REAL WORLD OPPORTUNITIES FOR
STUDENTS AND GIVING RECOGNITION
AND SCHOLARSHIPS AND AWARDS.
THIS IS ANOTHER EXAMPLE.
SO NEXT SLIDE ... SO THE OTHER
THING WE NEED TO DO TO
OPERATIONALIZE IS TO MAKE SURE
THAT WE'RE EVALUATING IT?
FIRST THERE ARE VERY FEW
VALIDATED MEASURES THAT EXIST.
ONE IS THE REST OR THE RESEARCH
ENGAGEMENT SURVEY TOOL.
SO WE NEED TO DEVELOP MORE VALID
MEASURES.
ON THE INDIVIDUAL INTERPERSONAL,
PARTNERSHIP AND INSTITUTIONAL
LEVELS.
THE OTHER IS THAT THERE ARE FEW
DIMENSIONS THAT ARE WELL
UNDERSTOOD.
YOU SAW THE DIMENSIONS ON THE
MODEL.
SOME ARE BETTER UNDERSTOOD THAN
OTHERS.
AND WHEN THERE IS POWER SHARING
BUT THERE ARE OTHER DOMAINS THAT
WE DON'T HAVE ADEQUATE MEASURES
FOR.
THIRD, THE STUDIES THAT DO EXIST
EVALUATING THE IMPACT ON
COMMUNITY ENGAGEMENT LACK
SYSTEMATIC REPORTING AND METH OH
LOGICAL RIGOR.
THE METHODS THAT WE USE AND HOW
WE EVALUATE THEM AND WE NEED TO
EMPLOY LONG TOOLED NATURAL
DESIGN TO LINK THESE MEASURES TO
IMPORTANT OUTCOMES TO THE
COMMUNITY AND TO INDIVIDUALS.
AND TO POLICY MAKERS.
SO NOW WE'RE GOING TO TALK ABOUT
THE SECOND STEP THAT WE NEED TO
TAKE IN THE FUTURE AND THAT IS
MOVING OUR PARTNERSHIPS THROUGH
TO TRUE COLLABORATION AND
LEADERSHIP.
THIS SLIDE SHOWS A CONTINUUM OF
COMMUNITY ENGAGED RESEARCH.
SO IN MANY CASES PEOPLE ARE
DOING WHAT I WOULD THINK OF AS
OUTREACH.
WHERE THERE IS SOME COMMUNITY
INVOLVEMENT AND THE
COMMUNICATION FLOWS FROM ONE
PERSON TO THE OTHER BUT IT'S
PRIMARILY ABO -- ABOUT INFORMING
PEOPLE.
THE NEXT IS CONSULTATION AND THE
COMMUNICATION FLOWS FROM THE
COMMUNITY TO ACADEMICS AND BACK
BUT WITH A FOCUS ON GETTING
ANSWERS.
RIGHT?
SO THERE IS MORE OF A MOVEMENT
THERE.
EVEN MORE COMMUNITY INVOLVEMENT
WHERE THE COMMUNICATION FLOWS IN
BOTH DIRECTIONS AND MORE
PARTICIPATION IN THE DIALOGUE
AND IN THE WORK.
SO WE WOULD SAY THAT IS
COMMUNITY INVOLVEMENT.
WHERE WE WANT TO AIM TO BE IS IN
THE AREA OF COLLABORATION AND
SHARED LEADERSHIP.
COLLABORATION MEANS THE
COMMUNICATION IS BI-DIRECTIONAL.
PARTNERSHIPS ON EVERY ASPECT OF
THE WORK.
THE OUTCOMES ARE NOT SIMPLY JUST
ABOUT DOING A PROJECT BUT THEY
ARE ABOUT TRUE PARTNERSHIP
BUILDING AND TRUST BUILDING AND
THEN SHARED LEADERSHIP.
WHERE WE HAVE BI-DIRECTIONAL
COMMUNICATION BUT THE FINAL
DECISION MAKING IS AT THE
COMMUNITY LEVEL.
SO WE REALLY THEN CAN IMPACT
BROADER HEALTH OUTCOMES BY
ENGAGING DEEPLY WITH THE
COMMUNITY.
SO HOPEFULLY WE WILL BE MOVING
OUR PARTNERSHIPS MORE TOWARDS
COLLABORATION AND SHARED
LEADERSHIP.
THIS DEPENDS ON THE RESOURCES
AND CAPACITY OF THE PARTNERS AND
NOT EVERYONE MIGHT BE PREPARED
TO DO THAT BUT THAT IS IDEALLY
WHERE WE WOULD WANT TO BE.
SO WHY DO WE NEED A MORE BROADLY
DEFINED CONTINUUM.
THIS WILL ALLOW US TO IDENTIFY
WHERE ARE WE ON THAT CONTINUUM.
TO HELP US FIGURE OUT WHERE THE
APPROPRIATE ACCESS POINTS ARE
DEPENDING ON WHAT OUR CONTEXTUAL
FACTORS ARE.
WHAT RESOURCES DO WE HAVE?
WHAT ARE THE PROBLEMS?
WHERE ARE THE POLICIES AND THE
SUPPORT FOR THE WORK THAT WE'RE
DOING.
AND IT WILL HELP US IN
DETERMINING WHAT ACTIONS WE NEED
TO TAKE TO PROGRESS ON THAT
CONTINUUM.
SO AS I'VE SAID THE ZENITH IS
COMMUNITY-BASED PARTICIPATORY
RESEARCH WHICH IS MORE IN THE
SHARED LEADERSHIP SPACE AND THIS
IS DESCRIBED AS A COLLABORATIVE
APPROACH THAT EQUITABLY INVOLVES
ALL PARTNERS, USING A TOPIC THAT
IS OF IMPORTANCE TO THE
COMMUNITY AND THE KEY HERE IS
THAT COMBINING KNOWLEDGE WITH
ACTION.
TO ACHIEVE SOCIAL CHANGE.
RIGHT.
SO, THAT IS WHERE WE'RE AIMING
FOR.
SO THE THIRD STEP IS NOW
BUILDING INDIVIDUAL AND
INSTITUTIONAL CAPACITY.
SO WE'RE OPERATIONALIZING
COMMUNITY ENGAGEMENT AND MOVING
MORE TOWARDS COLLABORATION AND
TRUE SHARED LEADERSHIP.
BUT IN ORDER TO DO THAT WE HAVE
TO BUILD CAPACITY.
SO WE NEED TO FOCUS MORE ON THAT
NOT ONLY AMONG OURSELVES BUT
AMONG RESEARCHERS WHO HAVE NOT
USED COMMUNITY ENGAGED
APPROACHES.
IT'S GOING TO BE ABOUT ALL
RESEARCHERS BEGINNING TO TAKE
THIS LENS TO THEIR WORK.
SO HOW DO WE BUILD THIS?
I CALL THIS THE THREE Rs.
I SHOW THIS ICEBERG FIGURE
BECAUSE WE KNOW THAT WHEN WE'RE
ENGAGE WITH OTHER PEOPLE OR WITH
OTHER GROUPS THAT THERE ARE LOTS
OF THINGS THAT WE CAN SEE ON THE
SURFACE AND THOSE ARE THINGS
THAT IT'S GOOD FOR US TO KNOW
ABOUT.
BUT IF WE REALLY WANT TO BUILD
OUR CAPACITY TO ENGAGE WITH
PEOPLE ESPECIALLY PEOPLE WHO ARE
NOT LIKE US WE HAVE TO BE AWARE
OF THE THINGS ARE BELOW THE
SURFACE.
THE BELIEFS, THE PREFERENCES AND
THE VALUES AND ATTITUDES.
ALL OF THOSE THINGS AND THE
REASON FOR USING THE ICEBERG
METAPHOR IS THAT IF WE'RE NOT
CAREFUL AND AWARE WE CAN REALLY
END UP CAUSING HARM.
SO IN ORDER TO OVERCOME THE
DANGER OF THOSE NOT KNOWING WHAT
IS BELOW THE SURFACE I SAY WE
NEED TO BUILD OUR ABILITY TO BE
MORE RESPECTFUL TO HAVE MORE
TRUSTWORTHY RELATIONSHIPS AND WE
NEED TO BE COGNIZANT OF THE NEED
FOR RESOURCES.
SO WHAT DO WE MEAN?
RESPECT.
WE NEED TO THINK ABOUT WHAT THE
DIVERSE EXPERIENCES ARE AND
PERSPECTIVES ARE AND CULTIVATE
THAT RESPECT.
TO MEET PEOPLE WHERE THEY ARE.
WE NEED TO USE HOLISTIC
APPROACHES.
WE NEED TO LEVERAGE COMMUNITY
WISDOM.
BUILDING RELATIONSHIPS.
WE KNOW WE NEED TO TEACH PEOPLE
HOW TO DO THIS BETTER.
HELP THEM REALIZE IT TAKES
SIGNIFICANT INVESTMENTS OF TIME
AND CLEAR COMMUNICATION.
THIS IS DYNAMIC AND EVOLVING.
THE EXTENT TO WHICH WE WILL BE
ENGAGED WITH COMMUNITIES IS
BASED ON TO THE EXTENT ON WHICH
WE'RE LISTENING TO PEOPLE AND
ALIGNING OUR WORK TO THEIR NEEDS
AND PRIORITIES.
WE MUST ENGAGE EVERYONE IN THE
PROCESS.
AND THE THIRD R IS REALIZING
THAT WE HAVE TO LEVERAGE
RESOURCES THAT EXIST.
THERE MAY BE STRENGTHS THAT
EXIST BUT THERE ARE TIMES WHEN
NOT HAVING CERTAIN RESOURCES IS
VERY -- CAN BE CHALLENGING.
AND IF WE DON'T RECOGNIZE THAT
AND SUPPORT PEOPLE WHERE THEY
NEED TO BE SUPPORTED BUT THEN
ALSO BENEFIT FROM THEIR
INNOVATION AND THEIR CREATIVITY
THAT WE WON'T BE MAXIMIZING THE
RESOURCES THAT ARE AVAILABLE TO
US.
THE THREE Rs OF COMMUNITY
ENGAGEMENT CAPACITY.
THIS SLIDE TALKS ABOUT THE
INSTITUTIONAL PIECE OF CAPACITY
BUILDING.
SO I TALKED BEFORE WITH YOU
ABOUT THE DIFFERENT DOMAINS OF
INSTITUTIONAL OPERATIONAL
DEFINITIONS OF COMMUNITY
ENGAGEMENT ON AN INSTITUTIONAL
LEVEL.
HOW CAN WE BUILD CAPACITY SO,
ITS EMBEDDED INTO THE MISSION
AND THAT WE ARE ACTUALLY SETTING
UP AN INFRASTRUCTURE AND THAT WE
HAVE PROGRAMS THAT ARE TAILORED
TO ADDRESS ALL OF THESE ISSUES.
ONCE WE HAVE THOSE PROGRAMS WHAT
ARE WE GOING TO TEACH PEOPLE?
I USUALLY SAY THAT I THINK THAT
THERE ARE TWO MAIN DOMAINS AND
THEY ARE RELATIONSHIPS SHIP
CENTERED IN AND COMPETENCY.
WE NEED TO TEACH PEOPLE ABOUT
MORE SELF-AWARENESS.
HELP THEM UNDERSTAND HOW THEY
NEED TO KNOW MORE ABOUT THEIR
PATIENTS, THEIR RESEARCH
PARTICIPANTS AND COLLEAGUES AND
PARTNERS.
GIVE THEM SKILLS IN
COMMUNICATION.
SHOW THEM WHAT IT MEANS WHAT IT
LOOKS LIKE TO BE RESPECTFUL.
HELP THEM IDENTIFY HOW TO WORK
TOWARDS SHARED VALUES.
ON THE STRUCTURAL COMPARES TEE
PIECE PEOPLE NEED TO UNDERSTAND
MORE ABOUT THE STRUCTURAL
FACTORS THAT CONTRIBUTE TO
HEALTH INEQUITIES AND SOCIAL
INJUSTICES.
THEY NEED TO BUILD PARTNERSHIPS.
HOW DO WE SET UP GROUPS FOR
COLLECTIVE ACTION?
ORGANIZATIONS NEEDS TO BE MORE
TRANSPARENT.
WHAT THOSE PRACTICES ARE FOR
TRANSPARENCY, DISCLOSURE OF
INFORMATION AND CLARITY.
FREQUENCY OF COMMUNICATION.
RELIABILITY AND COMPETENCE.
AND WE NEED TO PROVIDE
RESOURCES.
FUNDING FOR HEALTH DISPARITY
RESEARCH AND MAKE SURE THERE IS
DIVERSE PARTICIPATION IN ALL OF
OUR PROJECTS AND DIVERSE
LEADERSHIP.
SO, THAT IS WHAT IT LOOKS LIKE
TO BUILD THAT CAPACITY.
IN ORDER TO ENHANCE OUR
TRUSTWORTHINESS WHICH IS
ULTIMATELY WHAT WE WANT IN ORDER
TO ADVANCE HEALTH EQUITY.
SO THESE ARE SOME
RECOMMENDATIONS THAT HAVE BEEN
GIVEN IN THE ARTICLE BY MYSELF
AND DR. CRUZ AND ALSO BY
DR. WILKINS AND DR. WILL FI -- .
WHAT DO CONCRETE STRATEGIES AND
TOOLS LOOK LIKE?
TO ACCESS EASILY TO GIVE THEM
THE BASICS.
EXAMPLES OF HOW PEOPLE CAN DO
RECRUITMENT AND HOW THEY CAN ON
BOARD COMMUNITY MEMBERS.
ALLOWING COMMUNITY MEMBERS TO
GIVE TESTIMONIALS AND SHARING
THOSE BROADLY.
QUARTERLY NEWSLETTERS.
A WEBSITE THAT IS EASILY
ACCESSIBLE AND HAS INFORMATION
THAT IS IMPORTANT AND ACCEPTABLE
AND RELEVANT TO PEOPLE'S NEEDS.
INSTRUMENTS TO EVALUATE
PARTNERSHIPS.
CONCRETE TOOLS THAT WE CAN GIVE
PEOPLE TO BUILD CAPACITY.
SO I'M MOVING ON TO THE FOURTH.
THIS IS THE FOURTH OF FIVE NOW.
WE NEED TO ENHANCE LOCAL AND
GLOBAL BI-DIRECTIONAL LEARNING.
WE CANNOT DO THIS WORK IN
ISOLATION.
SO THESE ARE JUST SOME EXAMPLES
OF STUDIES THAT WE'VE DONE IN
BALTIMORE WHERE I WOULD SAY
WE'VE DONE A LOT OF LOCAL
LEARNING WHERE WE'VE LEARNED
FROM ONE ANOTHER AND LEARNED
FROM DIFFERENT PROJECTS ABOUT
REALLY WHAT WORKS WELL IN
COMMUNITY ENGAGEMENT.
A LOT OF THIS WORK HAS BEEN
FUNDED BY NHLBI AND ALSO NIMHD.
WHERE WE ENGAGE WE HAD HEALTH
SYSTEMS AND GROCERY STORE
OWNERS.
WITH PATIENTS, FAMILY MEMBERS,
COMMUNITY-BASED ORGANIZATIONS
FOR EXAMPLE, THOSE THAT TRAIN
AND EMPLOY COMMUNITY HEALTH
WORKERS.
WE WORK WITH COMMUNITY HEALTH
STORIES.
WE WORKED WITH RECREATIONAL
FACILITIES.
IT COMPANIES THAT ARE INTERESTED
IN USING HEALTH IT TO BETTER
MEASURE BLOOD PRESSURE.
WE'VE WORKED WITH HOME VISITING
PROGRAMS FOR MOMS.
AND SO WE LEARN FROM ONE ANOTHER
ABOUT WHAT STRATEGIES WORK BEST
AND WHICH SETTINGS, WHO ARE THE
VALUABLE AND IMPORTANT VOICES TO
INCLUDE IN ALL OF OUR ACTIVITIES
SO I THINK HAVING A NETWORK.
SO, THAT IS WHAT WE HAVE.
WE HAVE OUR NETWORK AND WE HAVE
COMMUNITY ENGAGEMENT COUNCILS
FOR EACH INDIVIDUAL PROJECTS AND
THEN WE HAVE A CENTER WIDE
ADVISORY BOARD WHERE WE HAVE
MEMBERS FROM ALL OF THE
DIFFERENT PROJECTS AND THERE IS
A LOT OF LEARNINGS THAT TAKE
PLACE IN OUR QUARTERLY MEETINGS.
SO I THINK WE'RE GOING TO MOVE
ON TO THE NEXT SLIDE SO I CAN
TELL YOU MORE ABOUT SOME OTHER
NETWORKS.
THAT WAS A LOCAL NETWORK.
THIS IS A NETWORK THAT I WAS
PART OF THAT WAS FUNDED BY
NEWSPAPER.
FUNDED SEVERAL CENTERS ACROSS
THE COUNTRY ADVANCING HEALTH
EQUITY ALL WITH COMMUNITY
ENGAGEMENT BEING A CORE
COMPONENT.
YOU CAN SEE THERE ARE DIFFERENT
TYPES OF COMMUNITIES INVOLVED
HERE.
THERE IS RURAL URBAN.
THERE IS AFRICAN-AMERICAN,
LATINO, AMERICAN INDIAN.
WE HAVE IMMIGRANT POPULATIONS
THAT WERE ENGAGED IN THIS WORK
SO WE COULD LEARN ABOUT THESE
DIFFERENT APPROACHES IN
DIFFERENT SETTINGS AROUND THE
COUNTRY.
WHEN WE WROTE OUR PROSPECTIVE
ARTICLE THAT ONE OF THE MAIN
LESSONS LEARNED WAS PRIORITIZING
COMMUNITY ENGAGEMENT.
THIS IS ANOTHER NETWORK THAT
YOU'VE HEARD LOTS ABOUT.
THE NIH CEAL PROGRAM.
IT HAS BEEN LEADING OUTREACH
ENGAGEMENT INCLUSIVE
PARTICIPATION IN RACIALLY AND
ETHNICALLY MINORITIZED COMMUNITY
THAT WERE DISPROPORTIONATELY
AFFECTED BY COVID-19.
YOU CAN SEE -- YOU CAN IMAGINE
HOW MUCH INNOVATION COMES OUT OF
THIS AND HOW QUICKLY IT CAN BE
SPREAD WHEN WE HAVE THESE
NETWORKS.
YET ANOTHER NETWORK.
THIS ONE FUNDED BY THE AMERICAN
HEART ASSOCIATION CALLED
RESTORE.
FOCUSED ON HYPERTENSION.
TO PARTNER WITH BLACK COMMUNITY
TO MITIGATE THE IMPACT OF
NEGATIVE SOCIAL DETERMINANTS OF
BLOOD PRESSURE AND TO
DISSEMINATE THESE FINDINGS.
SO YOU CAN IMAGINE THAT IT'S
REALLY BEEN IMPORTANT FOR THIS
NETWORK TO HAVE A HUGE COMMUNITY
ENGAGEMENT COMPONENT.
WE HAVE A CORE.
A COMMITTEE AND WE HAVE TOOLS
AND STRATEGIES THAT WE SHARE
ACROSS THE FIVE PROJECTS THAT
ARE PART OF THIS NETWORK.
YET ANOTHER ONE.
THE HEALTH EQUITY ACTION
NETWORK.
AND WE'RE FORTUNATE TO HAVE ONE
CALLED THE MATCH.
MID-ATLANTA CENTER.
THEN ALSO THE GLOBAL LOCAL
GLOBAL LEARNING PIECE.
ONE THING THAT THE RESEARCHERS
FOUND WAS THAT HIGH INCOME
COUNTRIES ACTUALLY USE A LOT
LESS COMMUNITY ENGAGEMENT.
PARTICULARLY AROUND COVID-19 AND
THAT WAS -- THERE WERE A LOT OF
INNOVATION AND BEST PRACTICES
WERE OCCURRING IN LOW-INCOME
COUNTRIES.
EVEN THOUGH WE HAVE A LOT OF
RESOURCES AND TECHNOLOGY AND
SLEPT INSTITUTIONS * THAT WE
DON'T KNOW IT ALL.
WE CAN TRANSLATE WHAT WE KNOW
AND SHARE THAT KNOWLEDGE WITH
PEOPLE IN LOW-INCOME COUNTRIES
BUT THEY CAN TEACH US A LOT.
ONE OF THE WAYS THAT WE HAVE TO
ENGAGED IN THE LOCAL GLOBAL
SETTING IS WE HAVE PROJECTS.
WE HAVE THIS PROJECT THAT TAKES
PLACE IN GHANA THAT USES SOME OF
THE APPROACH THAT'S WE USED HERE
IN BALTIMORE.
RELATED TO TRAINING OF STAFF AND
HOW TO MEASURE BLOOD PRESSURE
ACCURATELY.
BUT WE LEARNED FROM OUR PROJECT
IN GHANA ABOUT HOW MOBILE
TELEPHONE TECHNOLOGY CAN BE USED
TO HELP PEOPLE COMMUNICATE MORE
EFFECTIVELY WITH THEIR PRIMARY
CARE TEAM.
AND THAT THEY COULD REPORT SIDE
EFFECTS OR CONCERNS OR
MEDICATIONS WHICH WE WERE NOT
USING BUT WE HAD BEEN USING IN
GHANA BECAUSE THEY DIDN'T HAVE
AS MANY HEALTH CARE PERSONNEL
THERE AND THE DOCTORS COULD NOT
AFFORD TO SEE ALL OF THE
PATIENTS FOR FOLLOW-UP SO THEY
HAD TO HAVE THAT COMMUNICATION
GOING TO MANAGE THE POPULATION.
WE HAD BI-DIRECTIONAL LEARNING
USING COMMUNITY ADVISORY BOARDS
TO ADDRESS THE ISSUES OF HIV
INEQUITY AND WE LEARNED ABOUT
HOW THEY DID THAT AND WE
CO-DEVELOPED THE PROTOTYPE OF A
TOOLKIT THAT WOULD HELP PEOPLE
WHO WERE TRYING TO DEVELOP AND
SUSTAIN COMMUNITY PARTNERSHIP.
WE HAVE A SEMINAR SERIES AT JOHN
HOPKINS AND THIS PARTICULAR
EVENT WAS AROUND LOCAL LESSONS
AND GLOBAL APPLICATIONS.
SO WE HAD A PANEL DISCUSSION OF
RESEARCHERS AND COMMUNITY
PARTNERS FROM THE UNITED STATES
AS WELL AS OTHER PARTS OF THE
WORLD.
WORKING IN ASIA AND AFRICA AND
LATIN AMERICA TALKING ABOUT THE
COMMON LESSONS AND HOW CAN WE
LEARN FROM ONE ANOTHER.
SO THIS IS THE LAST STEP WHICH I
WOULD SAY IS FROM ENGAGEMENT TO
EMPOWERMENT AND EQUITY.
SO WHAT ARE WE TALKING ABOUT
WHEN WE SAY ENGAGEMENT?
IT'S ONE THING TO ENGAGE WITH
COMMUNITY BUT IT'S ANOTHER THING
FOR THE COMMUNITY TO BECOME VERY
ENGAGED IN THE WHOLE ISSUE OF
DISPARITIES AND HEALTH EQUITY.
THIS IS A NICE DEPICTION.
AND I WAS REALLY THINKING ABOUT
THIS A LOT BECAUSE SINCE WE JUST
HAD MID-TERM ELECTIONS WE'RE
STARTING TO SEE EVEN THOUGH MANY
PEOPLE PROBABLY KNEW THIS FOR A
LONG TIME BUT THE MORE CIVIC
CALLLY ENGAGED THE COMMUNITY IS
THE BETTER THEIR HEALTH IS.
THE RESEARCH HAS SHOWN THAT ON
AN INDIVIDUAL LEVEL IT'S GOOD.
IMPROVES HEALTH WHETHER THEY ARE
INVOLVED IN AN ORGANIZATION
PARTICIPATING IN ADVOCACY AND
EDUCATION.
WHETHER THEY ARE INVOLVED IN
DIRECTLY SERVING OR VOLUNTEERING
OR INVOLVED POLITICALLY.
VOTING AND WRITING LETTERS TO
POLICY MAKERS.
THERE ARE SO MANY DIFFERENT WAYS
OUR COMMUNITIES CAN BE ENGAGED
BUT AS COMMUNITY ENGAGED
RESEARCHERS HOW MUCH DO WE FOCUS
ON HELPING OUR COMMUNITIES BE
CIVICALLY ENGAGED.
IT'S ABOUT COMMUNITIES GETTING
INVOLVED TO MAKE SURE THAT WE
THEY ARE USING THE EVIDENCE THAT
WE GENERATE TO BRING ABOUT
CHANGE IN THESE STRUCTURAL
FACTORS.
SO I THINK WE NEED TO MOVE
TOWARDS DOING MORE OF THAT
EMPOWERING PEOPLE THROUGH CIVIC
ENGAGEMENT.
SO WHAT DOES IT MEAN WHEN THERE
IS EMPOWERMENT IN THE COMMUNITY?
IT MEANS THERE IS MORE
CAPABILITIES AROUND COLLECTIVE
CONTROL.
I LOVE THIS FRAMEWORK BECAUSE
THE RESEARCHERS DESCRIBE
EMPOWERMENT AS BEING POWER
WITHIN.
THAT DRIVE THEIR COLLECTIVE
CONTROL AND ACTION.
WHAT IS THE POWER WITH?
SO THEY HAVE POWER TOGETHER
BECAUSE THEY HAVE THE ABILITY TO
BUILD ALLIANCES AND ACT WITH
OTHERS TO ACHIEVE COMMON GOALS.
THE POWER TO SO THE CAPABILITIES
TO ESTABLISH BASES FOR
COLLECTIVE DECISION MAKING AND
THEN POWER OVER.
SO THEN THEY HAVE POWER OVER
INSTITUTIONS AND THEY CAN
EXERCISE THAT POWER OVER
DECISION MAKERS.
RIGHT?
SO POWER WITHIN.
POWER WITH.
POWER TO.
AND POWER OVER.
SO HOW CAN WE AS COMMUNITY
ENGAGED RESEARCHERS PROMOTE
THIS.
I'VE DESCRIBED THIS ON THREE
LEVELS.
AND THIS IS A COMMENTARY COMING
OUT LATER THIS WEEK.
WE NEED TO DO THIS ON AN
INTEREST THAT PERSONAL LEVEL AND
ON A SOCIETAL LEVEL.
WE STRENGTHEN OUR WORKING
RELATIONSHIPS WITH OUR COMMUNITY
MEMBERS.
WE EXPRESS CONCERN ABOUT WHAT IS
HAPPENING IN THE COMMUNITY AND
ADVISE COMMUNITY MEMBERS ABOUT
THE PERSONAL AND SOCIAL VALUE IS
OF THEM PARTICIPATING IN CIVIC
GROUPS AND VOTING.
ON AN ORGANIZATIONAL LEVEL WE
FORM AND SUPPORT GROUPS AND
ADVISORY BOARDS.
PROVIDE WORKSHOPS AND TRAINING.
USE RESEARCH METHODS THAT ARE
CENTERED ON SOCIAL JUSTICE.
AND ONE EXAMPLE IS WHAT I'VE
SHOWN HERE.
WHERE WE GOT THE PROSPECTIVES OF
BALTIMORE CITY RESIDENTS ON WHAT
THEY FELT LIKE THE FOOD
ENVIRONMENT WAS LIKE IN THEIR
NEIGHBORHOOD.
THESE ARE PEOPLE WITH
HYPERTENSION.
WE WANTED THEM TO TAKE PICTURES
AND SHOW US AND THEN TO USE THAT
INFORMATION TO BRING ABOUT
CHANGE WITH POLICY MAKERS.
SO WE HELD A COMMUNITY FORUM
WHERE WE HAD POLICY MAKERS THERE
AND THE COMMUNITY MEMBERS WERE
ABLE TO USE THEIR PHOTO VOICE
STORIES TO ADVOCATE FOR THE
CHANGE.
AND AT A SOCIETAL LEVEL WE AS
RESEARCHERS AND HEALTH CARE NEED
TO BUILD COLLABORATION.
HOW CAN WE WORK WITH LAWYERS AND
SOCIAL WORKERS.
EDUCATORS IN OTHER SPACES THAT
ARE DOING SOCIAL JUSTICE WORK.
HEALTH PROFESSIONALS HAVE BEEN
WORKING WITH PEOPLE IN NUMEROUS
SECTORS.
AND THEY'VE CREATED LANYARDS
WHEN THEY COME TO THE HOSPITAL
THEY CAN SCAN A QR CODE AND IT
TELLS THEM WHERE THEY SHOULD GO
AND VOTE.
THOSE ARE SOME STRATEGIES.
AND WE CAN MOVE FROM HEALTH
DISPARITIES WHERE THERE ARE
DIFFERENCES TO HEALTH EQUITY.
SO THANK YOU FOR YOUR TIME.
THAT WILL BE THE LAST SLIDE.
JUST TO PUT A PLUG IN FOR MY
BOOK.
IT'S AVAILABLE AT 35% DISCOUNT
FROM NOW THROUGH THE END OF JUNE
OF NEXT YEAR FOR THOSE OF YOU
WHO ARE ATTENDING THIS MEETING
AND LISTENING TO THIS LECTURE.
SO FEEL FREE TO VISIT THE JOHNS
HOPKINS UNIVERSITY PRESS AND
READ MORE ABOUT HOW YOU CAN GET
INVOLVED IN ADVANCING HEALTH
EQUITY.
THANK YOU.
>>THANK YOU SO MUCH,
DR. COOPER.
A VERY INFORMATION PACKED
PRESENTATION.
SO MUCH.
I WAS TAKING FRANTIC NOTES AND
I'M GLAD THAT WE'RE RECORDING
THIS.
THANK YOU AGAIN.
WE HAVE A QUICK QUESTION BECAUSE
WE ARE SLATED FOR A BREAK BUT WE
WANT TO SHARE THAT WITH YOU
BEFORE WE LET YOU GO.
ONE QUICK COMMENT FROM RUBY.
SHE WAS THANKFUL FOR THE
RESEARCHERS ABOUT THE LOCAL
COMMUNITY ENGAGEMENT NETWORKS
AND LIZ ALSO SAID FANTASTIC
PRESENTATION.
LOTS OF COLLAPSES BUT THERE IS A
QUESTION.
DO YOU THINK ALL RESEARCHERS
SHOULD ENGAGE COMMUNITY?
THERE ARE DEFINITELY SOME
RESEARCHERS THAT SHOULD NOT
ENGAGE COMMUNITY BECAUSE THEY
WILL NEVER IT WILL NOT BE
SUCCESSFUL FOR THEM.
WOULD LOVE YOUR THOUGHTS ON
THAT.
>>YOU RAISE A VERY IMPORTANT
POINT.
CLEARLY THERE ARE PEOPLE WHO
LACK THE SKILLS AND THE CORRECT
ORIENTATION OR APPROPRIATE ORIEN
ASIAN.
IDEALLY * EVERYONE SHOULD BE
ABLE TO ENGAGE IN COMMUNITY
ENGAGED RESEARCH BUT WE REALIZE
NOT EVERYONE IS GOING TO HAVE
THAT ABILITY.
WE SHOULD PROVIDE OPPORTUNITIES
FOR PEOPLE TO GET THAT TRAINING
AND TO BUILD THEIR CAPACITY TO
DO THAT WORK.
BUT WE ALSO PROBABLY NEED TO
HOLD PEOPLE ACCOUNTABLE.
SO THEY NEED TO DEMONSTRATE
THOSE BEHAVIORS AND ACTIONS THAT
WE TALKED ABOUT IN ORDER TO BE
ABLE TO CONTINUE TO DO THIS
WORK.
SO MAYBE THAT IS PART OF IT.
THE CAPACITY BUILDING IS
TRAINING PEOPLE BUT ALSO HAVING
THEM DEMONSTRATE SOME LEVEL OF
COMPETENCY.
AND MAYBE SOME PEOPLE DO MORE
OUTREACH OR CONSULTATION AND
THEY DON'T DO THE COLLABORATIVE
PART.
THEY TURN THAT OVER TO OTHERS.
>>THANKS, DR. COOPER.
THERE ARE A COUPLE OF OTHER
QUESTIONS BUT I SEE DR. MENSAH'S
HAND RAISED.
WE'LL SHARE THEM OFF-LINE AND
INCLUDE THEM IN OUR REPORT.
DR. MENSAH.
>>THANK YOU VERY MUCH.
THIS WAS FANTASTIC.
SO THANK YOU VERY MUCH.
A QUICK COMMENT AND A QUICK
QUESTION.
THE COMMENT IS THAT I SHOULD
THANKING YOU BECAUSE * EARLY ON
IN THE PANDEMIC WHEN WE NEEDED
TO DEMONSTRATE TO OUR
COMMUNITIES THAT THERE ARE
PEOPLE OF COLOR AND ESPECIALLY
WOMEN OF COLOR INVOLVED IN THIS
RESEARCH YOU WERE ONE OF THE
FIRST TO ALLOW NIH TO USE YOUR
PHOTOGRAPH IN OUR SCIENTIFIC
PATHWAY AND IT WAS VERY
EFFECTIVE.
YOU'VE GIVEN US A LOOT TO THINK
ABOUT.
ONE QUESTION THAT HAS BOTHERED
US IS HOW DO WE MEASURE THE
IMPACT OF ALL OF THE WORK THAT
WE'RE DOING BEYOND THE PROCESS
MEASURES, HOW MANY MEMBERS WE
HAVE AND HOW MANY TOWN HALLS.
YOUR THOUGHTS ON HOW NIH AND
NHLBI LEADERSHIP CAN LEAD AND
ADVANCE THE RESEARCH IN
MEASURING IMPACT OF COMMUNITY
ENGAGEMENT.
>>>THAT IS WHAT I WAS TALKING
ABOUT -- IN THE SORT OF
OPERATING PIECE.
IT'S VERY DIFFICULT BECAUSE THIS
WORK HAS SO MANY DIFFERENT
DOMAINS AND BECAUSE WE DON'T
HAVE A LOT OF VALID -- VALIDATED
MEASURES RIGHT NOW WE NEED TO
USE WHAT WE HAVE.
I THINK THAT WE SHOULD THINK
ABOUT AS WE'RE DOING OUR WORK
HOW WE ACTUALLY INCORPORATE
RESEARCH QUESTIONS AROUND THE
COMMUNITY ENGAGEMENT PROCESS
ITSELF AND NOT COME THE
INTERVENTIONS.
SO WE CAN USE EXPERIMENTAL
DESIGNS.
LONGITUDE NATIO -- LONGITUDINAL
DESIGNS ARE GOOD.
YOU HAVE DIFFERENT PROJECTS AND
YOU LOOK TO SEE WHETHER ENGAGING
COMMUNITIES IN A CERTAIN WAY LED
TO STRONGER RECRUITMENT OR
BETTER OUTCOMES OF THE TRIAL.
I THINK IF WE THINK ABOUT USING
PREPOST DESIGNS OR EXPERIMENTAL
DESIGNS IN OUR APPROACHES SO
THAT WE'RE NOT ONLY LOOKING AT
THE SPECIFIC MEDICAL INTERESTS
CONVENIENCE BUT ALSO THE
COMMUNITY ENGAGEMENT APPROACH.
WAS IT LE LESS INTENSIVE?
WHO WAS ENGAGED AND WHETHER THAT
INFLUENCED THE OUTCOMES.
THAT IS WHAT WE NEED TO START
DOING.
>>GREAT.
THANK YOU VERY MUCH.
>>I SEE A REQUEST -- FROM
DR. AGUILAR --
>>WELL, THANK YOU SO MUCH.
THIS WAS AS DR. MENSAH MENTIONED
A FANTASTIC PRESENTATION.
WHAT A WONDERFUL ROAD MAP YOU'RE
SHARING WITH US.
VERY THOUGHTFUL.
COMING FROM EXPERIENCE AND
COMING FROM GENUINE INVOLVEMENT
WITH COMMUNITIES AND I JUST
WANTED TO THANK YOU FOR NOT ONLY
EXPLAINING THE PRESENTATION THAT
YOU MADE BUT ALSO INCLUDING THE
NATIONAL ACADEMY OF MEDICINE
FRAMEWORK THAT WE'VE BEEN
WORKING ON FOR ALMOST FOUR
YEARS.
JUST TO LET YOU KNOW AND THE
AUDIENCE THERE IS GOING TO BE
ANOTHER INSTA INSTALLMENT.
THE COMPREHENSIVE REVIEW THAT WE
DID AND THERE ARE GOING TO BE 28
MEASURES THAT WILL BE RELEASED
SHORTLY AND ALSO IMPACT STORIES.
TO PUT IT IN PERSPECTIVE WITH
EXAMPLES AT THE LOCAL LEVEL WITH
GREAT DIVERSITY ON THAT AS WELL.
AND WHAT A LEADER YOU ARE AND
WHAT A REALLY CONTRIBUTIONS THAT
YOU'VE MADE TO THE FIELD.
THANK YOU SO MUCH.
>>THANK YOU.
I'M INDEBTED TO YOU AS WELL
BECAUSE YOUR WORK HAS CERTAINLY
GUIDED ME.
>>THANK YOU SO MUCH TO ALL OF
OUR ESTEEMED PANELISTS AND
QUESTIONS AND DR. COOPER THANK
YOU FOR KICKINGS OFF DAY TWO
WITH AN A AMAZING PRESENTATION
AND SETTING THE THEME FOR OUR
FULL DAY AHEAD.
THANK YOU SO MUCH.
* WE'LL SHARE THE EXTRA
QUESTIONS WITH YOU OFF-LINE SO
WE CAN GET YOUR RESPONSES AND
SHARE THEM IN THE REPORT FOR THE
WORKSHOP.
YOU CAN SEE THE ADD DUE LACKS
THAT YOU'RE GETTING.
* *.
WE'RE GOING TO SHORTEN OUR BREAK
A LITTLE BIT.
WE'RE COMING BACK AT NOON.
PLEASE JOIN US AGAIN FOR SECTION
4 WHICH IS THE FIRST SESSION FOR
TODAY.
COMING RIGHT UP IN 8 MINUTES.
SEE YOU SOON.
>>GOOD AFTERNOON, EVERYONE.
I HOPE EVERYONE IS BACK AFTER A
QUICK BREAK AND WE WOULD LIKE TO
KICK OFF OUR FIRST SESSION OF
THE DAY.
FOCUSED ON THE IMPORTANCE OF
COMMUNITY ENGAGED RESEARCH IN
COMBATING GLOBAL HEALTH DID I
PARITIES.
* I WOULD LIKE TO HAND IT OVER
TO DR. MAKEDA WILLIAMS WHO'S A
PROMISE DIRECTOR AT T AT T.
>>GOOD AFTERNOON AND WELCOME.
I WOULD LIKE TO SAY I THINK IT'S
APROPOS TO HAVE THIS SESSION
AFTER DR. LISA COOPER'S KEYNOTE
ADDRESS NOT ONLY BECAUSE SHE
TOUCHED ON THE LOCAL AND GLOBAL
BI-DIRECTIONAL -- BUT SHE KNOWS
WHAT IT MEANS TO REALLY ENGAGE
THE COMMUNITY FROM A PERSONAL
PERSPECTIVE BUT FROM A
PROFESSIONAL PERSPECTIVE AS
WELL.
I WON'T GO INTO DETAIL AS WE
MENTIONED EARLIER WE HAVE A
WORKSHOP BOOKLET THAT HAS MORE
DETAILS ABOUT THE BACKGROUNDS
FOR EACH OF OUR CHAIR AND
PANELIST.
FIRST DR. MARCELLA KN NUNEZ SMI.
DR. AN A MOCUMBI.
DR. MARSHALL DULL OKAY RE ID.
AND DR. NIKHIL TANDON.
* AND AS OUR KEYNOTE SPEAKER
YESTERDAY MENTIONED WE LIVE IN A
GLOBAL COMMUNITY.
WE'VE SEEN THAT SCIENCE AND
DISEASE HAS NO BORDERS.
SO HEALTH RESEARCH SHOULD ENSURE
ACTIVE PARTICIPATION OF THE
COMMUNITY FROM THE BEGINNING TO
THE END AND SHOULD BE COMMUNITY
CENTERED FOR MAXIMUM SUCCESS.
OUR CHAIR AND PANEL WILL DISCUSS
IMPORTANT FOCAL AREAS FOR
COMMUNITY ENGAGED RESEARCH IN
THE GLOBAL HEALTH CONTENT.
AS THEY ARE SPEAKING THINK ABOUT
QUESTIONS.
YOU CAN PUT THEM IN THE Q&A BOX.
FOR ZOOM AND I WILL BE
MONITORING THAT AND WE WILL HAVE
A MODERATED QUESTION AND ANSWER
PERIOD AFTER THE DISCUSSION.
I WOULD LIKE TO NOW TURN IT OVER
TO DR. NUNEZ SMITH.
>>THANK YOU FOR THE
INTRODUCTION AND MODERATING OUR
PANEL TODAY.
AN EXTRA THANK YOU GOES TO NHLBI
FOR REALLY ELEVATING THIS FOCUS
ON THE SCIENCE OF COMMUNITY
ENGAGED RESEARCH.
AND OF COURSE FOR OUR TOPIC
TODAY AND/OR PANEL THIS IS A
TOPIC THAT IS VERY NEAR AND DEAR
TO ME AND I KNOW IT IS TO OUR
ESTEEMED PANELISTS AS WELL.
IT IS OUR HOPE THAT TODAY'S
PANEL WILL PROVIDE A CRITICAL
CONTRIBUTION AND WILL DEEPEN OUR
UNDERSTANDING OF THE IMPORTANCE
OF COMMUNITY ENGAGED RESEARCH IN
COMBATING GLOBAL HEALTH
DISPARITIES.
WITH THE WORLD'S POPULATION
OFFICIALLY HITTING 8 BILLION
TODAY THIS CONVERSATION SEEMS
ESPECIALLY TIMELY.
AS YOU'VE HEARD WE HAVE SEVERAL
EXPERTS WHO HAVE BEEN LEADING
RESEARCH PROGRAMS AND
INITIATIVES THROUGH MULTIPLE
CHALLENGES INCLUDING THE
PANDEMIC.
AND WE'RE GOING TO INVITE OUR
PANELISTS TO DISCUSS SOME OF THE
LESSONS LEARNED AND
OPPORTUNITIES FOR INNOVATIVE
FROM THEIR OWN WORK AND
PERSPECTIVE.
BUT BEFORE WE TURN TO LEARNING
FROM EACH OF THEM IN THIS
IMPORTANT GLOBAL CONTEXT WE'RE
GOING TO HEAR ABOUT WORK IN
MOZAMBIQUE AND INDIA.
AND BRIEFLY SHARE LESSONS THAT
I'VE LEARNED AND ARE STILL
LEARNING -- AND THEN I'LL WRAP
BY REFLECTING ON HOW THOSE
EXPERIENCES FORM MY PERSPECTIVE
WORKING WITH COVID-19.
WE HEARD COMMUNITY ENGAGED
RESEARCH EXIST ACROSS A SPECTRUM
OF ENGAGEMENT LEVELS BUT THE
GUIDING PRINCIPLES THE VALUES
ARE CONSISTENT REGARDLESS OF THE
APPROACH AND DEPTH OF
ENGAGEMENT, RESPECT, TRUST.
THAT BI-DIRECTION ALEX CHANGE.
* AND VALUING OF VARYING
EXPERTISE.
WISDOM.
USING AN AS IT BASED FRAME TO
LIFT THE POSITIVE AND THE OFTEN
UNDER RECOGNIZED ASSETS THAT
EXIST ACROSS EVERY SINGLE
COMMUNITY.
AND ADDRESSING THOSE SOCIAL AND
STRUCTURAL BARRIERS TO
FACILITATE FULL RESEARCH
PARTICIPATION.
AND THIS IS THE MOST IMPORTANT
AND THE MOST DIFFICULT.
BUT HONORING THE REALITY THAT IN
MANY OF THE SETTINGS COMMUNITIES
HAVE BEEN EXPLOITED AND HARMED
IN THE VERY NAME OF RESEARCH.
SO HERE AT YALE AT THE -- WE AIM
EVERY DAY AND TO ALWAYS WORK IN
SERVICE OF THOSE EQUITY SEEKING
COMMUNITIES HERE LOCALLY A BUT
ALSO BEYOND AND HOW WE DO OUR
WORK SO I KNOW WE'RE GOING TO
GET INTO AS WELL.
HOW WE DO OUR WORK IS
FOUNDATIONAL FOR US AND OVER
THESE YEARS WE HAVE LEARNED TIME
AND TIME AGAIN THAT UNWAVERING
RESPONSIBLE OF SUSTAINING AND
NURTURING PARTNERSHIPS.
I WANT TO SHARE A COUPLE OF
QUICK EXAMPLES.
FOR ALMOST TWO DECADES WE'VE
WORKED WITH A STEERING COMMUNITY
INCLUDING LOCAL COMMUNITY
LEADERS AND RESEARCHERS BOTH TO
DRIVE A HEALTH EQUITY FOCUS
COMMUNITY ENGAGED PROJECT
RESEARCH AGENDA HERE IN GREATER
NEW HAVEN.
AND THIS GROUP MEETS MONTHLY AND
HAS STEERED OVER THE YEARS MORE
THAN 30 COMMUNITY RESEARCH
RESPONSE INITIATIVES AND HAVE
DEVELOPED BEST PRACTICE MODELS.
I WANT TO SHARE SOME WORK THAT
THE STEERING COMMITTEE IS DOING.
WE'RE PILOTING A NEW APPROACH.
AGAIN TO HOW WE DO OUR WORK.
THIS MODEL IMPORTANTLY TRANSFERS
THE POWER OF BUDGETING SO
RESOURCE ALLOCATION, DECISION
MAKING TO THOSE WHO HAVE THE
LIVED EXPERIENCE AND WISDOM IN
OUR COMMUNITIES.
CHIA HAS A GOVERNING COALITION.
IT DETERMINES THE RESEARCH
QUESTION.
ALSO IDENTIFIES THE METRICS FOR
CHANGE, SELECTS AND FUNDS
INVESTIGATORS AND ULTIMATELY
INTERPRETS FINDINGS AND
DETERMINES NEXT STEPS.
SO THE GROUP IS WORKING ON CYCLE
ONE WHICH IS FOCUSED ON A
COMMUNITY IDENTIFIED PRIORITY
WHICH IS PEDIATRIC ASTHMA
DISPARITY HERE.
ERIC IS ALSO THE HOME OF THE
COORDINATING CENTERS THAT
SUPPORT THE NIH FUNDED EASTERN
CARIBBEAN HEALTH OUTCOMES
NETWORK.
IT'S A MULTI-SECTORIAL
COLLABORATIVE CHRONIC DISEASE
NETWORK.
OUR FLAGSHIP RESEARCH ACTIVITY
IS AN INTERGENERATIONAL COHORT
FOLLOWING RESIDENTS IN THE U.S.
TERRITORIES OF PUERTO RICO, THE
U.S. VIRGIN ISLANDS AND TRINIDAD
AND BARBADOS.
THEY SERVE AS A BOARD OF
DIRECTORS.
SET THE STRATEGIC PLAN FOR THE
RESEARCH AGENDA.
ALWAYS ANCHORING PRIORITIES,
RESEARCH QUESTIONS.
THE RESEARCH APPROACHES.
THE INTERPRETATION AND
ENGAGEMENT AND DISSEMINATION
STRATEGIES.
SO WE'RE EXCITED ABOUT ALL OF
THE WORK DONE BY OUR GOVERNING
BOARD, THE INVESTIGATORS AND TO
SEE THAT EXPANDING DIVERSITY OF
RESEARCH THAT EXIST IN OUR
PORTFOLIO.
WE'VE LAUNCHED A PLATFORM TO
SHARE THE DATA MORE BROADLY.
SO IN NEW HAVEN AND IN THE
EASTERN CARIBBEAN WE HAVE FOUND
REALLY JUST DEEP VALUE IN
REMAINING NIMBLE AND FLEXIBLE IN
ORDER TO STAY RESPONSIVE AND
ACCOUNTABLE TO OUR COMMUNITY
PARTNERS.
AS I KNOW THE PANELISTS WILL
ATTEST THIS IS NOT EASY TO DO.
BUT PRIORITIZING ALWAYS THE
DELIVERABLES THAT ARE SET FORTH
BY EXPERTS HAS LED TO THE
HIGHEST QUALITY GREATEST IMPACT
SCIENCE.
AT THE END OF THE DAY MOST OF US
ARE CONDUCTING RESEARCH WITH
THAT HOPE.
IN THE HOPE THAT THE FINDINGS
FROM OUR WORK WILL BE DIFFERENCE
MAKING FOR INDIVIDUALS FOR
COMMUNITIES.
AND WE KNOW EVERYONE GATHERED
TODAY THAT THE PROCESS OF
RESEARCH MATTERS SO MUCH AS
WELL.
AND THE IMPLICATIONS OF THE HOW
AND THE WHY ARE FAR-REACHING.
WE SAW THIS WITH COVID-19
VACCINES.
WE HAD TO PLACE AND CENTER OUR
COMMUNITY ENGAGEMENT AND
PARTNERSHIP AT THE CORE OF THE
FEDERAL ALL OF THE GOVERNMENT
RESPONSE.
AND THAT WAS THE ONLY PATHWAY TO
CONNECT COMMUNITIES SUCCESSFULLY
WITH SCIENTIFIC DISCOVERY.
I WOULD LIFT UP THE NIH
COMMUNITY ENGAGEMENT ALLIANCE
HERE IN THE U.S. CONTEXT.
THAT ENTIRE INITIATIVE STRIVES
TO RELIEVE YET DISPARITIES.
* THOSE COMMUNITIES THAT HAVE
BEEN MOST AFFECTED.
THE GOALS TO FOSTER RESEARCH IN
THOSE COMMUNITIES HARDEST HIT BY
THE PANDEMIC.
BUT IT BUILDS ON EXHIBITING
PARTNERSHIPS AND THAT *
REALITIES TRUE FOR THE NIH'S UP
INITIATIVE.
ALSO LEVERAGING THOSE LASTING
COLLABORATION TO SPEED THE
PROCESS UP.
BOTH OF THOSE ARE REAL WORLD
MANIFESTATIONS OF WORKING WITH
ESTABLISHED AND SUSTAINED
PARTNERS.
AND TO BE FRANK THIS IS WHY THE
TOP RECOMMENDATION FROM THE
PRESIDENTIAL HEALTH EQUITY TASK
FORCE IS TO INVEST IN COMMUNITY
LED SOLUTIONS.
SO WITH THAT I WILL PAUSE AND
I'M SO VERY MUCH LOOKING FORWARD
TO OUR CONSIDERATION TODAY.
THE KNOWLEDGE EXCHANGE WILL
BEGIN AND CONTINUE AND I KNOW
AFTER OUR PANEL ENDS.
WE'RE QUITE AWARE OF THE
CHALLENGES IN THE SPACE ARE
SUBSTANTIAL.
WE FACE OTHER REALITIES TO THE
RESEARCH NAVIGATING CLIMATE
CHANGE ONGOING PUBLIC HEALTH
THREATS.
THOSE ALL DISRUPT THE TRAJECTORY
OF OUR WORK.
BUT WHERE THERE ARE CHALLENGES
ARE THERE ARE OPPORTUNITIES AND
WE'LL DISCUSS ALL OF THOSE
TODAY.
SO WITH THAT I'LL SAY WELCOME
AGAIN TO THE PANELISTS.
WE'RE GOING TO GO IN A
ROUND-ROBIN STYLE.
I HAVE A SET OF QUESTIONS TO
GAIN YOUR INSIGHTS ON THIS
IMPORTANT TOPIC.
WE'LL KEEP AN EYE WHILE WE'RE IN
DISCUSSION ON THE TIME.
WE WANT TO INVITE THE AUDIENCE
INTO QUESTIONS TOO.
SO AROUND 12:45 WE'LL TURN TO
THAT.
ARE WE READY?
YES.
WONDERFUL.
SO MY VERY FIRST QUESTION IS
AROUND THE BARRIERS.
THE CHALLENGES THAT EXIST.
AND DR. TANDON.
WHAT ARE THE BARRIERS AS YOU'VE
FOUND THEM?
>>THANK YOU DR. NUNEZ-SMITH.
THANK YOU FOR PUTTING ME IN THE
SPOT RIGHT AT THE VERY
BEGINNING.
>>MY PLEASURE.
YOU OWE ME.
>>I'M A CLINICALLY TRAINED
CLINICALLY ACTIVE PERSON SO FOR
ME IT REQUIRES A SIGNIFICANT
CHANGE OF HATS GOING IN FROM A
SITUATION WHERE SOMEBODY WHO HAS
AN I'LLMENT COMES TO YOU * FOR
CARE VERSUS GOING OUT INTO THE
COMMUNITY AND SEEKING ASSISTANCE
COOPERATION FROM A RANGE OF
STAKEHOLDERS IN THE COMMUNITY
FOR DOING THE SORT OF WORK THAT
YOU HAVE WANT TO DO.
THAT WORK MAY INVOLVE TRYING TO
COME UP WITH SOLUTIONS FOR
IMPROVING QUALITY OF CARE TO
THOSE INDIVIDUALS BUT THE
BIGGEST CHALLENGE HAS BEEN TO
GET ALL OF THE STAKEHOLDERS
TOGETHER EACH ONE OF THEM
GETTING A VERY DIFFERENT
PERSPECTIVE.
EACH HAVING THEIR OWN
CONSTRAINTS.
COMING FROM A DIFFERENT SOCIAL
CONTEXT.
AND IN A COUNTRY LIKE END A I'M
SURE IN OTHER LOW AND MIDDLE
INCOME COUNTRIES THE ISSUE OF
SUFFICIENT ECONOMIC AND
EDUCATIONAL HETEROGENEITY
BETWEEN THE VARIOUS
STAKEHOLDERS.
AS A RESULT WHAT HAPPENS IS THAT
YOU NEED TO BE ABLE TO CONVINCE
A WHOLE RANGE OF PEOPLE USING
DIFFERENT APPROACHES OF WHAT
YOU'RE PLANNING TO DO IS WITH A
GENUINE INTENT THAT YOU REALLY
WANT TO BE A BEARER OF PUBLIC
GOOD.
AND THAT THERE -- THERE WILL BE
INITIAL SKEPTICISM.
AND WE'VE SEEN THAT BECAUSE
THERE IS A PERCEPTION THAT THIS
IS AN OUTSIDER COMING IN TO TELL
US WHAT NEEDS TO BE DONE AND
THAT BARRIER BECOMES
SIGNIFICANT.
SO YOU'VE GOT TO DO A FORMAL
ASSESSMENT OF WHAT IT IS THAT
EACH ONE OF THOSE ARE CONCERNED
ABOUT AND TRY TO A WAGE THEIR
CONCERNS STAR -- * IN A WAY THT
ADDRESSES THEM.
THEIR PRIMARY CONCERN WOULD BE A
STEADY SUPPLY OF FREE MEDICINE.
SIMILARLY IF YOU'RE BRINGING THE
GOVERNMENTAL APPROACH -- IF YOU
DOOR -- ARE GOING INTO THE
COMMUNITY -- OVERCOME THAT
HEALTHY SKEPTICISM -- THESE
ACADEMICS THINK THEY KNOW WHAT
THEY ARE DOING BUT THEY HAVE NO
CLUE.
SO I THINK THE MOST IMPORTANT
THING IS TO BELIEVE THAT WHAT
WE'RE DOING IS REALLY FOR
PEOPLE'S GOOD.
AND ALSO CONVINCE ALL OF THE
PARTICIPANTS THAT -- IT IS WITH
AN ABSOLUTE GENUINE INTENTION.
YOU WILL GET PEOPLE ON-BOARD BUT
UNTIL YOU MANAGE TO DO THAT IT
REMAINS A VERY CHALLENGING TASK.
>>THANK YOU SO MUCH AND LOTS OF
NODDING FROM THE OTHER
PANELISTS.
YOU STARTED ARTICULATING SOME
IMPORTANT BARRIERS THAT ARE
UNIVERSALLY RECOGNIZED.
OF COURSE, HERE IN THE TIME AND
THE RESOURCES -- ALSO THAT
SKEPTICISM THAT CAN EXIST.
SO WE HAVE TO NAME THAT.
YOU STARTED SPEAKING TO SOME
STRATEGIES WHICH WE'LL GET TO
BUT THANKS FOR LIFTING THOSE UP.
DR. MOCUMBI YOU WANT TO ADD SOME
ADDITIONAL CONTEXT?
>>YES.
THANK YOU VERY MUCH FOR HAVING
ME HERE.
AND I WILL START BY SAYING I WAS
AGREEING WITH WHAT MY COLLEAGUE
WAS SAYING.
AND I THINK THAT ONE OF THE
PROBLEMS THAT WE FACE IN AFRICAN
AND THE RESOURCE SETTINGS IS
THAT THERE ARE KEY DIFFERENCES
IN THE WAY PEOPLE VIEW GLOBAL
HEALTH IN THE FIRST PLACE.
SO THE WAY THAT WE UNDERSTAND
GLOBAL HEALTH HAS A PARTNERSHIP
IS SOMETIMES SEEN AS SOME NOTE
TO SELF TYPE OF MESSAGE.
PROVISION OF SUPPORT.
AND THAT WE SEE OURSELVES AS THE
RECIPIENTS.
AND THIS IS SOMETHING THAT NEEDS
TO BE ADDRESSED WHEN THEY ARE
TALKING ABOUT ENGAGING THE
COMMUNITY IN GLOBAL HEALTH
RESEARCH TO COMBAT DISPARITY.
THERE ARE DIFFERENT D DIFF DIFF.
THEY ARE KEY FOR US TO
UNDERSTAND -- WHAT WE WANT TO DO
IN TERMS OF HEALTH -- THERE ARE
MANY DIFFERENCES THAT MUST BE
TAKEN INTO ACCOUNT.
THE VIEWS AND PROSPECTIVES OF
THE RESEARCHERS EVEN IF THEY
BELONG TO THAT COMMUNITY OR TO A
CLOSER COMMUNITY ARE VERY MUCH
DIFFERENT FROM WHAT THE
COMMUNITY THINKS WHAT THE
COMMUNITY EXPECTS AND ALSO
VARYING THE WAY THE COMMUNITY
SEES THE RESEARCHER.
SO ASSUMPTIONS OF SHARED
LEADERSHIP AND THE CORE
DEVELOPMENT OF RESEARCH AND ALL
OF THESE CONCEPTS THAT WE WANT
TO INCORPORATE IN COMMUNITY
ENGAGEMENT AND THE INVOLVEMENT
ARE SOMETIMES DIFFICULT.
AND YES WHEN WE GET A SENSE OF
THE COMMUNITY HOW THEY SEE US WE
START ESTABLISHING A SORT OF
EMPATHY WITH THE COMMUNITY.
IT'S MANY TIMES EASIER BUT THERE
ARE AREAS WHERE WE CONTINUE TO
HAVE MAJOR DIFFERENCES IN THE
WAY THAT WE COMMUNICATE IN THE
FIRST PLACE.
A VERY BIG BARRIER IS A WAY THE
COMMUNITY USES THE TOOLS AND THE
DIFFERENT TOOLS THAT THEY HAVE
TO COMMUNICATE.
THE RULES, THE ROLE OF EACH
MEMBER OF THE COMMUNITY HAS A
PART OF THE SOCIETY.
AND IN SOME COMMUNITIES THE ROLE
OF WOMEN FOR INSTANCE, THE ROLE
OF THE HOUSEHOLD HOLDERS.
I'M USED TO DO COMMUNITY
RESEARCH IN VERY LOW-INCOME
SETTINGS.
SO PRIORITY SETTING AS THE
PREVIOUS PANELIST WAS SAYING IS
COMPLETELY DIFFERENT.
AND TO INVOLVE THE COMMUNITY IN
SETTING PRIORITIES FOR RESEARCH
I THINK WILL ALWAYS CONTINUE TO
BE A CHALLENGE FOR US IN AFRICA
AND FINALLY THERE ARE FINANCIAL
ASPECTS OF THE COMMUNITY THAT
DETERMINED A CERTAIN DEGREE OF
VULNERABILITY THAT WE SHOULD
RESPECT.
AND SHOULD ALSO TAKE INTO
CONVERSATION IN TRYING TO
ESTABLISH THIS EQUITABLE
PARTNERSHIPS WITH THE COMMUNITY.
SO I WILL END SAYING THAT FOR ME
AS AN AFRICAN RESEARCHER WORKING
IN AFRICAN SETTING THERE ARE
SOME DILEMMAS OF THE LOCAL
RESEARCHER WHO'S WORKING ON
GLOBAL PARTNERSHIPS IN DOING
RESEARCH IN IN -- THESE
COMMUNITIES.
BECAUSE I'M THINKING IF TRULY
I'M DOING AND EQUITABLY SHARING
THE POWER.
AND WE'VE BEEN DOING COMMUNITY
ENGAGEMENT.
DOING OUTREACH AND PROBABLY MORE
OUTREACH THAN COMMUNITY
ENGAGEMENT BECAUSE IT'S
SOMETHING THAT WE NEED TO DO
BECAUSE WE FEEL THAT WE DO NOT
BELONG TO THAT COMMUNITY.
WE DON'T UNDERSTAND COMPLETELY
THE LANGUAGE.
WE DON'T COMMUNICATE THE SAME
WAY.
BUT ALSO HOW WE CAN SERVE AS A
LINK BETWEEN THOSE WHO ARE
REALLY OUR PARTNERS FROM OUTSIDE
AND THE COMMUNITY THAT WE'RE
AIMING TO SERVE AND THAT BELONG
TO.
SO I WILL STOP HERE.
>>THANK YOU.
INCREDIBLY RICH.
SO IMPORTANT THAT WE'RE HOLDING
SPACE TO NAME SOME OF THESE
CHALLENGES.
SOME OF THE BARRIERS.
AND I FEEL LIKE WE'RE GOING NEXT
LEVEL ON THIS.
BECAUSE YOU'RE REALLY LIFTING UP
A LOT OF THE COMPLICATIONS.
BIG ISSUES IN TERMS OF PARADIGM
SHIFTS THAT ARE REQUIRED.
BUT ALSO THE CHALLENGES FOR
INVESTIGATORS AND ALL OF THE
THINGS THAT HAVE TO BE
ACKNOWLEDGED.
SO IT REALLY IS ESSENTIAL TO
HAVE INVESTIGATORS OF A PLACE
WORKING WITH PEOPLE FROM A
PLACE.
BUT NOT SUFFICIENT IN AND OF IT
IS AND PRESENTS OTHER CONDITIONS
ITSELF.
I'M GOING TO ASK YOU DR. TULLOCH
REID.
HELP US WALK TOWARDS SOME OF THE
THINGS THAT HAVE WORKED.
WE ALWAYS KNOW THERE ARE GOING
TO BE BARRIERS.
IT DOES NO ONE A SERVICE TO
PRETEND THOSE DON'T EXIST.
BUT EACH ONE OF YOU HAVE DONE
INNOVATIVE WORK TO ADDRESS THIS.
SO TO ADD TO WHAT YOUR
COLLEAGUES HAVE SHARED AND WALK
US IN YOUR STRATEGIES.
>>THANK YOU VERY MUCH.
IT'S ACTUALLY QUITE INTERESTING.
SOMETHING THAT YOU SAID AT THE
VERY BEGINNING WHICH IS AROUND
THE WHOLE COMMUNITY ENGAGEMENT.
A LOT OF TIMES WHEN PLANNING
PROJECTS WE'RE FOCUSED ON THE
MAIN OUTCOME AND GETTING TO THAT
CONCLUSION ABOUT A STATEMENT ON
SOME THEORETICAL MATTER BUT ALL
OF THE STEPS THAT ARE INVOLVED
IN MOVING FROM JUST A CONCEPT
AND AN ANSWER THROUGH INVOLVING
PEOPLE IN THE WORK TO COME UP
WITH THE ANSWER ARE QUITE
CRITICAL.
ONE OF THE CHALLENGES THAT I'VE
FOUND IS THAT THERE SOMETIMES
SEEMS TO BE FEWER RESOURCES FOR
THAT ENGAGEMENT PROCESS.
GENERALLY THERE IS A CULTURE
THAT HAS EXISTED IN THE PAST
WHERE PERSONS WHO ARE LIVING
OUTSIDE OF THE DEVELOPING
COUNTRIES ARE MORE WILLING TO
PARTICIPATE, A LOT MORE TRUST
AND BELIEF IN THE HEALTH SYSTEM
SO THE ENGAGEMENT TAKES PLACE
EASILY.
BECAUSE ONCE YOU ASK THEY WILL
COME.
BUT THAT IS CHANGING.
AND THAT IS ONE OF THE THINGS
THAT IS CHANGING.
THE CULTURE IS ANOTHER THING
THAT WE HAVE TO THINK ABOUT.
BECAUSE WE SOMETIMES THE
COMMUNITY AND THAT IS ANOTHER
IMPORTANT PART IS THE COMMUNITY
NOT LOOKING TO ENGAGE US IN A
PARTICULAR WAY BECAUSE WHEN A
PHYSICIAN OR SURGEON COMES IN --
YOU ARE TRAINED AND YOU HAVE THE
ANSWERS.
SO THESE ARE THINGS THAT WE HAVE
TO THINK AROUND WHEN ENGAGING.
BUT ONE OF THE THINGS THAT I'VE
FOUND RECENTLY -- NOT JUST THE
SPECKS TAKESES AND MEET GOALS,
SOMETIMES WE'RE MISSING SOME OF
THE RESOURCE THAT'S WILL HELP US
EFFECTIVELY ENGAGE.
IN MY DEPARTMENT * YOU CAN --
WHAT DO WE NEED.
WE NEED A STATISTICIAN.
LABORATORY SCIENTISTS.
WE NEED A SOCIAL SCIENTISTS.
BUT WHAT IS THE MOST IMPORTANT?
WE DO NEED TO ENGAGE?
IN RESEARCH ASSISTANT OR A
COMMUNITY WORKER AND SOMETIMES
THESE ARE THE CHALLENGES.
HOW WE COMMUNICATE WITH THE
POPULATION AND ENGAGE THEM.
THIS IS WHAT WE'RE DOING.
THIS IS WHAT WE THINK WE WOULD
LIKE TO DO.
WHAT DO YOU THINK IS A GOOD
ANSWER ETC.
OR COMMUNICATION STRATEGIES ARE
LIMITED BECAUSE WITHIN A SMALL
DEPARTMENT YOUR FOCUS IS ON THE
ESSENTIALS.
ABOUT WEBSITES AND MATERIALS
THAT CAN ENGAGE PEOPLE.
WE DON'T HAVE DEDICATED STAFF TO
DO THAT.
SO IT'S ALWAYS SOMETIMES A BIT
OF A BALANCING ACT WHERE YOU'RE
TRYING TO KEEP THE FUNDING
GOING.
AND THE FUNDING COMES FROM
ANSWERS NOT FROM ENGAGEMENT.
SO, THAT IS VERY IMPORTANT.
TO GET ANSWERS YOU NEED TO
ENGAGE.
SO, THAT IS A TRIC.
THAT IS ONE OF THE * THINGS THAT
WE HAVE TO FIGURE OUT.
FOR ME AND MY SETTING I'M IN
JAMAICA WHICH IS RELATIVELY
SMALL.
IT HAS ONE ADVANTAGE IS THAT YOU
SOMETIMES CANNOT HELP BUT EMBED
YOURSELF WITHIN YOUR SOCIETY.
SO YOU'RE GOING TO THE
SUPERMARKET YOU'LL RUN INTO
PEOPLE THERE.
THAT IS ONE WAY OF ENGAGEMENT.
YOU'RE TRAINING PEOPLE WHO HAVE
BECOME THE LEADERS IN THE
DIFFERENT INSTITUTIONS.
THAT IS 509 WAY OF BEGINNING
YOUR ENGAGEMENT OR FACILITATING.
I'M A PRACTICING * PHYSICIAN.
THAT IS ANOTHER WAY TO ENGAGE.
WHEN YOU'RE NOT AFRAID TO ENGAGE
YOURSELVES FULLY.
IN DIFFERENT SETTINGS WE FIND A
VERY PRESCRIPTIVE APPROACH IN
TERMS OF THIS IS MY ROLE AND MY
ROLE ENDS HERE AND BEGINS THERE
AND IN A SMALLER SETTING YOU'RE
AT A SUPERMARKET AND THE
PATIENTS WILL CALL TO YOU -- AND
YOU'LL HAVE TO ENGAGE AND IF
YOU'RE DELIBERATE AS WELL -- FOR
INSTANCE THINKING OKAY I DON'T
ENGAGE WITH PATIENTS OUTSIDE OF
MY OFFICE FROM 9:00 TO 5:00 BUT
BEING PART OF A SUPPORT GROUP --
THESE ARE THINGS THAT ARE QUITE
HELPFUL.
IN PUTTING US IN A POSITION
WHERE WE CAN UNDERSTAND A LITTLE
BIT BETTER WHAT THE COMMUNITY IS
ASKING FOR MOST AND WHEN WE'RE
READY OR WHEN WE HAVE THE
OPPORTUNITIES THAT WE CAN WORK
TOGETHER TO COME UP WITH THE
ANSWERS THAT ARE NEEDED TO
CREATE SOLUTIONS.
>>THANK YOU.
I LOVE THE IMAGERY OF YOU IN THE
SUPERMARKET.
FIELDING ALL OF THE QUESTIONS.
>>WE CAN ALL IDENTIFY WITH
THAT.
THANK YOU.
THIS IS REALLY IMPORTANT.
I SORT OF DOUBLE UNDERLINED YOUR
EMBED.
THAT IS CRITICAL.
BECAUSE EVERYTHING THAT YOU'RE
SAYING IS IT'S HARD IF YOU'RE ON
THIS WALK WITH COMMUNITY TO SAY
YOU'RE GOING TO TURN THAT OFF.
THIS IS ALWAYS ON.
AND THERE ARE GOING FOR FORMAL
OR INFORMAL WAYS BUT MAKING ONE
SELF AVAILABLE.
WHICH IS A DIFFERENT
CONVERSATION BUT AN IMPORTANT
ONE PARTICULARLY WHEN IT COMES
TO RESEARCHERS AND WHAT YOU'RE
DOING.
SO REALLY STRATEGIES -- STARTING
TO LIFT AROUND PRIORITIZATION IN
A LIMITEDDED RESOURCE CONTEXT.
I'M GOING TO TURN TO YOU TO
CONTINUE OUR THINKING AROUND
SOME OF THE STRATEGIES THAT
MAYBE YOU HAVE FOUND HELPFUL AND
WOULD LIKE TO SHARE WITH US
PLEASE.
>>THANK YOU.
SO WORKING IN COMMUNITIES WHICH
HAVE USUALLY VERY LOW LEVELS OF
HEALTH LITERACY AT LEAST FOR OUR
WAY OF INTERPRETING THEIR
KNOWLEDGE BECAUSE WE ARE NOT
ABLE TO INTERPRET INDIGENOUS
KNOWLEDGE IN THESE COMMUNITIES.
IT'S SOMETIMES DIFFICULT BUT WE
FIND WAYS AND SOME OF THE
STRATEGIES ARE REALLY -- WE WERE
DISCUSSING TO EMBED YOURSELF
YOUR TEAM IN TO THE COMMUNITY.
STAY WITH THEM, DISCUSS WITH
THEM.
IT'S TRUE THAT WE DON'T KNOW TO
DO IT.
MAYBE THE PROPER WAY BUT EVERY
STUDY HAS ONE PRELIMINARY STEP
WHICH IS TO GO THERE,
UNDERSTAND, TRY TO FIND WAYS TO
GET THE TERMS THAT WE WANT TO
EMPLOY DURING OUR WORK FROM THE
COMMUNITY.
THE CLOSEST WAY TO GET THE
VOCABULARY TO BE THE SAME AMONG
US.
THE SECOND THING IS REALLY HOW
WE WERE DISCUSSING TO REALLY BE
GENUINE ABOUT WHAT WE'RE GOING
TO DO BUT ALSO HOW -- HIGHER OR
LOWER THE EXPECTATIONS SHOULD
BE.
BECAUSE THERE ARE SOME DEGREE OF
COMPLEXITY IN OUR STUDIES SUCH
AS GENETICS SOMETIMES.
TECHNOLOGY.
THAT IS NOT REALLY THE
DAY-TO-DAY LIFE FOR THESE
COMMUNITIES.
SO WE NEED TO KNOW THEM FIRST.
TO BE WITH THEM.
I LIKE WHAT DR. COOPER WAS
SAYING ABOUT THE POWER WITHIN
ETC. SO THAT WE CAN UNDERSTAND
THEM AND WE CAN USE THAT AS AN
ADVANTAGE TO START TALKING THE
SAME LANGUAGE.
AND TRYING TOGETHER TO BECOME
PARTNERS IN RESEARCH.
I DON'T HAVE EXPERIENCE OF
REALLY GETTING IT TO A LEVEL
WHERE WE ARE REALLY FULLY
PARTNERS UNTIL DISSEMINATION
PHASES ETC.
BECAUSE THIS IS RE -- RELATIVELY
NEW TO OUR DISCUSSION THE
DISCUSSION OF COMMUNITY
ENGAGEMENT AND THIS IS ONE OF
THE REASONS WHY WE NEED TO DO
RESEARCH IN OUR SETTINGS.
TO UNDERSTAND TO CREATE MODELS
AND TO BE ABLE TO MEASURE THE
IMPACT OF THE COMMUNITY
ENGAGEMENT AND INVOLVEMENT
STRATEGIES THAT WE USE.
SOMETIMES WE HAVE PROBLEMS WITH
STRATEGIES THAT ARE TOP DOWN.
FROM RESEARCHERS TO THE
COMMUNITY.
BECAUSE THEY BRING WITH THEM
SOME DEGREE OF NOT CONSIDERING
THE COMMUNITY.
NOT ACKNOWLEDGING THEIR OWN KNOW
HOW OF THE COMMUNITY.
THIS IS DIFFICULT FOR US
CLINICIANS.
I HEARD ONE OF MY COLLEAGUES
ALSO SAYING.
BUT IT'S SOMETHING THAT WE NEED
TO LEARN.
SO WE NEED TO DO RESEARCH IN OUR
SETTINGS SO THAT THEN WE CAN
LEARN AND INTER INTEREST -- INTT
APPROPRIATELY.
NO SINGLE STRATEGY HAS PROVEN TO
WORK.
BUT THIS IS WAY THAT WE'VE TRIED
TO BE PART OF THE COMMUNITY.
WORK FROM THEM AND LEARN FROM
THEM AND IT'S SOMETIMES A
PROCESS THAT CHANGES THROUGH
TIME WITH THE WAY THAT THEY
UNDERSTAND THE STUDIES.
WE'RE WORKING WITH COHORTS SO WE
GET TO KNOW THEM.
THEY GET MORE INVOLVED.
WE GAIN THEIR TRUST AND THINGS
CAN CHANGE.
SO I THINK THAT WE NEED TO
EXPLORE THE DIFFERENT STRATEGIES
AT THE BEGINNING.
BUT THEN SURELY WE'RE ABLE TO
FIND AN INTERFACE WHERE THIS
RELATION BETWEEN THE RESEARCH
TEAM AND THE COMMUNITY BECOMES
REALLY A PARTNERSHIP.
>>YES.
FANTASTIC.
THANK YOU.
A LOT THERE.
SO INCLUDING I THINK THAT
IMPORTANT NOTE TO US -- THAT IS
INHERENT IN THE WORK THAT WE DO.
SO BEING MINDFUL OF THE CHANGE
AND ALSO THE MEETING PEOPLE WHEN
THEY ARE.
AND KNOWING WHERE WE ARE AS
INVESTIGATORS.
A LOT THERE.
DR. TANDON.
>>AGAIN IN A COUNTRY LIKE INDIA
WHERE THERE IS OFTEN A VERY
LARGE GAP BETWEEN THE RESEARCHER
AND THE COMMUNITY WHERE RESEARCH
IS BEING CONDUCTED.
AND FOR WANT OF A BETTER WORD I
THINK PEOPLE FROM THE COMMUNITY
PERCEIVE THE ACADEMIC RESEARCH
ERAS SOMEBODY COMING FROM A
DIFFERENT PLANET.
THEREFORE THAT CONVERSATION IS
VERY OFTEN THE DANGER OF GOING
IN PARALLEL.
TALKING TWO DIFFERENT LANGUAGES.
THE SECOND IS IT'S NOT
METAPHORICALLY TWO DIFFERENT
LANGUAGES BUT IT COULD BE
BECAUSE THERE ARE A FEW HUNDRED
LANGUAGES OUT THERE.
SO, THAT IS ANOTHER ISSUE THAT
COMES INTO PLAY.
FOR US AND THE CRITICAL PART
WHEN THERE IS A COMMUNITY
ENGAGEMENT EVEN THOUGH I'M
SITTING IN DELI -- * WE TRY AND
ENSURE THAT THE ENTIRE CADRE OF
THE STAFF WHAT IS GOING TO
INTERACT IS HIRED WITHIN THE
COMMUNITY.
SO THERE ARE PEOPLE WHO BELONG
THERE WHO UNDERSTAND THE
PROBLEMS WHO SPEAK THE LANGUAGE
IN MORE WAYS THAN ONE.
IT'S VERY IMPORTANT BECAUSE YOU
MAY BE SAYING SOMETHING WHICH
MAY GO SO DESPERATELY WRONG IN
TRANSLATION THAT CAN BOOMERANG
AND DESTROY AN ENTIRE PROJECT.
GIVING YOU A SIMPLE EXAMPLE WE
THOUGHT WE WERE SPAT IN
DEVELOPING AN APPLICATION FOR AN
ACTIVIST.
WE THOUGHT HINDU WOULD SUFFICE.
BUT 50% OF THEM DIDN'T KNOW HOW
TO READ HINDU.
AND THAT WAS THE END OF THAT.
WE WERE SET BACK SIX MONTHS.
THE SECOND THING IS TO HAVE A
BOARD.
GETTING THE ELDERS TO SPEAK TO
UNDERSTAND WHAT THEIR CONCERNS
ARE.
TO BE CLEAR THAT THERE MAY BE
CERTAIN TABOO AREAS.
YOU CREATE PROBLEMS FOR
YOURSELVES.
AND THAT WAS -- IT'S BETTER TO
HAVE THAT INTERACTION WITH THE
MEMBERS OF THE COMMUNITY EVEN IF
IT'S AN INFORMAL COMMUNITY
ADVISORY BOARD.
BUT THAT CONVERSATION IS
CRITICAL AND WE'VE ALWAYS
BENEFITED SIGNIFICANTLY BY DOING
WHETHER YOU CALL IT PILOTING OR
FORMATIVE RESEARCH BUT THE FIRST
FEW MONTHS ARE JUST TRYING TO
GET A SENSE OF WHAT IS POSSIBLE
WHAT IS A GROUND REALITY.
WHAT ARE THE CONCERNS THAT WE'RE
LIKELY FACING AND THEN
NAVIGATING THROUGH THAT.
THOSE TWO OR THREE THINGS HAVE
REALLY HELPED US GET ACROSS
WHERE OTHERWISE WE WOULD HAVE
BEEN IN SERIOUS DIFFICULTY.
I'LL STOP HERE.
>>THANK YOU.
FANTASTIC.
I WANT TO LEARN -- I WANT TO ASK
YOU FOR YOUR FUTURE WATCH.
WHERE WE CAN GO AND WHERE WE'RE
GOING.
BUT FIRST MAYBE A RAPID FIRE
ROUND-ROBIN FROM A QUESTION WE
HAD THAT CAME IN FROM
DR. COOPER.
IT'S RELEVANT TO OUR
CONVERSATION.
BECAUSE WE'RE ENUMERATING A LIST
WHERE WE ARE SEEKING OPPORTUNITY
TO ADDRESS THE CHALLENGES.
WE TALKED ABOUT SUCCESSFUL
STRATEGIES.
I'LL SHARE FOR EVERYONE
DR. COOPER'S QUESTION IS HAVE
YOU AND YOUR COMMUNITY PARTNERS
CONSIDERED POOLING OR SHARING OF
RESOURCES AND PERSONNEL TO
ENHANCE CAPACITY?
THIS MIGHT BE A FUTURE WORK TOO
BUT A QUICK ROUND-ROBIN.
30 SECONDS FROM EACH OF YOU.
IF YOU'LL START US OFF MARSHALL
AND WEAND WELL -- WE'LL CIRCLE .
>>FOR US THERE ARE A NUMBER OF
THINGS TO TAP INTO.
ONE IS EVEN WITH THE MINISTRY OF
HEALTH AND THE NETWORK THAT THEY
HAVE AND EVEN FOR US BECAUSE WE
DON'T HAVE A VERY STRONG OR
DEDICATED COMMUNICATION SYSTEM.
WE TAP INTO SOME OF THEIR
THINGS.
SO WE'LL FOLLOW IT AND TAG.
AND EVEN BECAUSE OF THE
RELATIONSHIP WE HAVE WE TRY TO
BECOME INVOLVED IN THE COMMUNITY
OUTREACH PROJECTS OR PROGRAMS
THAT THEY MAY BE INVOLVED IN AND
THEN WE'RE ABLE TO GET SUPPORT
FROM THEM AROUND A NUMBER OF
OTHER THINGS THAT WE NEED TO DO
IN COMMUNITIES.
I FOUND THAT VERY HELPFUL
>>THANK YOU.
DR. MOCUMBI.
>>WE HAVE BEEN USING
COMMUNITY-BASED ORGANIZATION.
NONGOVERNMENT ORGANIZATIONS THAT
ARE USUALLY LINKED TO THE
COMMUNITIES DOING SOCIO WORK ON
DOING THE AGRICULTURAL -- OR
OTHER FORMS OF DEVELOPMENT
PROGRAMS.
THAT USUALLY KNOW THE COMMUNITY
AND ARE ALREADY EMBEDDED IN THE
COMMUNITY.
AND THE SECOND EXPERIENCE THAT
WE'RE HAVING NOW FOR INSTANCE
WITH THE NONCOMMUNICABLE DISEASE
AND POVERTY NETWORK IS TO USE
THE VOICES OF THE PATIENTS
THEMSELVES.
THOSE THAT ARE PART OF THE
COMMUNITIES THAT HAVE THEIR OWN
PERSONAL EXPERIENCES ABOUT
LIVING WITH CERTAIN CONDITIONS
AND THAT HELP AND SUPPORT AND
TAKING OUR MESSAGE TO THOSE
COMMUNITIES TO SPECIFIC GROUPS,
THE LESSONS, WOMEN.
THIS IS THE WAY TO TRY TO PULL
RESOURCE THAT'S SOMETIMES WE DO
NOT HAVE IN OUR OWN PROJECTS.
LET US NOT FORGET THAT MANY
TIMES WE HAVE ALREADY THE
PROJECTS DONE WHEN WE GO TO THE
COMMUNITY TO START THIS
DISCUSSION.
SO WE ARE TOO LATE THERE.
AND IT'S REALLY HOW WE TRY TO DO
THAT.
>>YES.
THANK YOU.
DR. TANDON, ALL OF US WORKING IN
LIMITED RESOURCE ENVIRONMENT?
>>ABSOLUTELY.
INDIVIDUAL INVESTIGATORS AND
INDIVIDUAL RESEARCH TEAMS ARE
NEVER GOING TO BE BIG ENOUGH TO
MANAGE WHAT WE'RE PLANNING TO
DO.
AND WE WILL END UP WITH A VERY
NARROW MAYBE EVEN A TUBULAR
PERSPECTIVE.
SO WE WILL TAKE THE ASSISTANCE
AND YOU'LL OF THE EXAMPLES GIVEN
-- AND IF YOU'RE DEVELOPING
TECHNOLOGY AND HAVING CLEARLY A
COMMUNITY FACING APPLICATION.
THERE SHOULD BE AN OPPORTUNITY
FOR THE COMMUNITY TO SPEAK TO
YOU.
SO THAT YOU CAN GET MORE INPUT.
ALL OF THIS IS CRITICAL.
SITTING IN YOUR OFFICES AND
DOING THIS WORK WOULD BE THE
DEATH NAIL OF THAT RESEARCH AS
FAR AS I'M CONCERNED
>>THAT IS A GREAT QUESTION.
I AM GOING TO HAVE ONE MORE
QUESTION FOR THE PANELIST BEFORE
WE OPEN IT UP.
I HAVE MANY WORDS UNDERLINED AND
CIRCLED.
MULTI-SECTORIAL.
IT'S THE RIGHT QUESTION.
HOW DO WE POOL THE RESOURCES AND
REIMAGINE WHERE THOSE RESOURCES
CAN COME FROM AND HOW DO WE ALSO
REIMAGINE WHAT RESOURCES ARE.
BUT BEING ABLE TO SAY YES
BETWEEN GOVERNMENTAL
PARTNERSHIPS AND THE PRIVATE
SECTOR MAYBE TOO IF WE'RE ALL ON
THIS JOURNEY TOGETHER TO ADDRESS
THESE HEALTH DISPARITIES THAT
HAVE BEEN PERSISTENT AND
PERVASIVE IT IS ALL HANDS ON
DECKING.
THE RESOURCES HAVE TO COME FROM
MANY DIFFERENT DIRECTIONS BUT WE
HAVE TO BE MORE CREATIVE EARLIER
IN SOME OF THE SETTINGS THAT
HAVE LIMITED RESOURCES.
WE'RE BACK TO COVID.
AND THE REALITIES OF COVID-19.
SO ONE QUESTION AND THEN WE'LL
OPEN IT UP AND MAYBE WE RAPID
FIRE THIS ACROSS EACH OF YOU.
THINGS THAT HAVE BEEN UNIQUE
WITHIN COVID-19.
A LOT OF ISSUES THAT WE'VE
TALKED ABOUT HAVE PREDATED
COVID.
AND THEN TRYING TO CONDUCT
RESEARCH THROUGH A GLOBAL
PANDEMIC.
WE FACE MANY PUBLIC HEALTH
THREATS.
WE FACE THE REALITIES OF CLIMATE
CHANGE IN OUR WORK.
SO IS THERE ANYTHING THAT YOU
FOUND UNIQUE.
WORKING IN COVID-19 AROUND
COMMUNITY ENGAGEMENT?
>>I HAVE TO ADD -- SOMETHING.
WE HAVE THREE DIFFERENT
PROJECTION.
NONE HAD ANYTHING TO DO WITH
COVID-19.
BUT THE BIGGEST CHALLENGES WAS
FINDING WAYS TO ENGAGE COMMUNITY
AND ONE OF THE BIG LESSONS IS
THE PERSONAL TOUCH.
AS MUCH AS YOU WOULD LIKE TO
THINK AROUND FLYERS -- THE
ABSENCE OF PERSONAL TOUCH DOES
MAKE A DIFFERENCE.
ON A TELEPHONE TO HAVE THEM GO
ON-LINE TO DO VIRTUAL FOCUS
GROUPS THOSE WERE ALL VERY
INTERESTING LEARNING
EXPERIENCES.
IT'S MADE US BETTER BUT I'M NOT
SURE IF IT WAS AS EFFECTIVE.
BUT IT DOES HIGHLIGHT THE NEED
TO ENGAGE ON A PERSONAL LEVEL WE
SPITE ALL OF THE OTHER THINGS.
WE CAN BUILD ON TECHNOLOGY LATER
BUT THE PERSONAL TOUGH IS
IMPORTANT.
HOW RELATIONSHIPS CHANGE OVER
TIME AND CONTINUING TO DO
RESEARCH IS ALSO VERY IMPORTANT.
WHEN COMMUNITIES HAVE NOT BEEN
ENGAGED IN RESEARCH IT'S HARD TO
GO BACK TO THEM AND TRY TO
ENGAGE THEM AGAIN.
THAT'S AN IMPORTANT POINT.
WE MUST STILL KEEP TRYING
BECAUSE WHEN WE DROP THE BALL
FOR TOO LONG IT'S HARDER TO PICK
IT UP.
>>THANK YOU.
ANYTHING TO ADD -- YES, COVID.
>>IN OUR CASE IN FACT COVID
REPRESENTED AN OPPORTUNITY.
THOSE PATIENTS WERE FORCED NOT
TO GO TO HEALTH FACILITIES
BECAUSE OF THE VERY BIG DEMAND
BY COVID.
SO WE WERE ABLE TO ORGANIZE
OUTSIDE THE HOSPITALS NEAR THE
COMMUNITIES.
AT MEETINGS AND OTHER WAYS TO
INTERACT WITH THE COMMUNITY TO
ELECT PEER SUPPORTERS.
WE THINK IN THE COMMUNITY WHO
WOULD COME TO GET THEIR
VACCINES.
SO FOR NONCOMMUNICABLE DISEASES
COVID WAS A WAY TO SHOW THE LINK
BETWEEN BOTH COMMUNICABLE AND
NONCOMMUNICABLE DISEASES AND HAS
GIVEN US SOME SORT OF POWER AND
POSITION NOW TO START ADVOCATING
AND NEGOTIATING WITH GOVERNMENTS
AND WITH OTHER INSTITUTIONS.
THAT ARE LEADEDDERS OR POLICY
MAKERS IN CHANGING THE WAY
NONCOMMUNICABLE DISEASES AND IN
PARTICULAR CARDIOVASCULAR
DISEASES ARE SEEN.
THIS IS WHAT THAT I WANTED TO
HIGHLIGHT FROM A LOW-INCOME
SETTING.
>>I AGREE WITH EVERYTHING THAT
HAS BEEN SAID AND WE ALSO HAD
TWO DIFFERENT SETS OF FAIRLY
SIGNIFICANT LOCKDOWNS.
NO.
YOU COULD NOT GO OUT.
THEREFORE WE WERE COMPELLED TO
COME UP WITH STRATEGIES FOR
CONTINUOUS ENGAGEMENT SO THEY
DIDN'T FEEL AS THOUGH WE JETS
JETSONED THEM IN A TIME WHEN
THEY NEEDED US THE MOST.
AND FINDING DIFFERENT WAYS OF
PROVIDES CARE AND MEDICATION.
BECAUSE HOSPITALS WERE TURNED
INTO COVID FACILITIES.
USING TELLY MEDICINE AND PIGGY
BACKING ON THAT, IT BECAME A
VERY IMPORTANT LEARNING
EXPERIENCE FOR US.
IT'S NOT A GREAT PLAN "A" BUT IT
HELPED US DEVELOP A REASONABLE
PLAN "B."
AND FROM EACH OF YOU WHAT I TAKE
AWAY IS HOW ESSENTIAL IT IS TO
EXPAND OUR TOOLKIT.
NOT TO REPLACE.
BUT TO EXTEND AND THINK ABOUT
THIS AS SORT
LESSONS WE CAN LEARN AND
HARVESTING THOSE INNOVATIONS.
I APPRECIATE THAT.
I KNOW DR. WILLIAMS IS ON STAND
BY TO HELP US.
AND MODERATE US WITH ANY Q&A
THAT HAS COME IN.
TODAY WE WANT TO REALLY HONOR
EVERYONE'S PERSPECTIVE AND VOICE
HERE TOO.
SO I'LL TURN IT OVER TO YOU
DR. WILLIAMS.
IF THERE ARE ANY QUESTIONS FOR
THE PANELISTS.
I ALWAYS HAVE QUESTIONS FOR THE
PANELISTS SO WE DON'T HAVE ANY
DOWNTIME.
I HAVE MORE QUESTIONS FOR YOU
AND I THINK OUR COLLEAGUES DO AS
WELL.
>>I AGREE AND I ALWAYS HAVE
QUESTIONS TOO.
SO ONE OF THE QUESTIONS IN THE
Q&A BOX FROM STANLEY ZEFLER.
WHAT DO YOU FEEL HAS BEEN YOUR
GREATEST ACCOMPLISHMENT IN YOUR
COMMUNITY WORK?
I'M GOING TO START WITH
MARSHALL.
>>I GOT A QUESTION INSTEAD.
I DON'T KNOW IF I CAN SAY THERE
IS ANY MAJOR ACCOMPLISHMENT.
I TALK ABOUT HOW I PERCEIVE
MYSELF.
ONE OF THE BIG THINGS THAT WORK
IN THE COMMUNITY SHOULD DO IS TO
CHANGE YOUR MIND SET.
TO KIND OF MAKE YOU DEPRIORITIZE
YOURSELF.
AND NOT BE AFRAID TO LOOK
STUPID.
OR DO OTHER THINGS LIKE YOU'RE
NOT JUST PLAYING ONE ROLE AS A
SCIENTIST OR THE DOCTOR BUT TO
BE UNAFRAID TO EMBED YOURSELF.
AND THAT IS WHAT THAT I'VE
LEARNED FROM WORKING WITH A
NUMBER OF COLLEAGUES,
CLINICIANS, NURSES AND OTHER
PERSONS WHO HAVE PUT THEMSELVES
OUT THERE AND YOU DO SEE THAT
REWARD.
THAT IS A LESSON I'VE LEARNED
AND TO BE LESS CONCERNED ABOUT
SELF.
IT MAKES A BIG DIFFERENCE.
>>GREAT.
NIKHIL.
WHAT ABOUT YOU?
>>GOSH.
I THINK FOR ME THE PERMANENTLY Y
LOOKING AFTER THE PATIENT AND
CONVERT THAT LEARNING
INCREMENTALLY TO DEVELOP SYSTEMS
OF CARE WHICH ARE GOING TO
AFFECT COMMUNITIES AND THE WAY
THAT WE DELIVER HAS BEEN MOST
FULFILLING.
WHETHER THAT IS AN ACHIEVEMENT
OR NOT TIME WILL TELL.
BUT THIS HAS BEEN VERY
GRATIFYING.
SITTING IN A CLINIC YOU'RE
DEALING WITH ONE INDIVIDUAL AT A
TIME.
THE LEARNINGS -- HAS BEEN I
THINK A VERY IMPORTANT PART OF
MY WHOLE EXPERIENCE AND
SOMETHING THAT I CHERISH.
>>THANK YOU FOR THAT.
ANA.
>>FOR ME I THINK THE MOST
IMPORTANT IS TO BECOME VERY
HUMBLE.
AND LEARN FROM THE COMMUNITY.
BECAUSE FROM BEING THIS MANY
YEARS WORKING WITH THEM AND
TRYING TO THINK THAT I HAVE A
QUESTION -- AND I HAVE A METHOD
AND I'M IN CHARGE.
IN FACT WE LEARN TO UNDERSTAND
THE COMMUNITY AS THEY BECOME OUR
PARTNERS.
THEY START TALKING TO US AND WE
LEARN A LOT FROM THEM.
AND TO BECOME HUMBLE.
EXTREMELY HUMBLE.
AND I THINK THE SECOND ONE IS
THAT THERE IS REALLY NO BARRIER
TO DO RESEARCH EVEN WITH
COMMUNITIES THAT APPARENTLY DO
NOT UNDERSTAND VERY WELL WHAT
WE'RE DOING.
I'VE BEEN DOING GENETIC STUDIES
IN THE COMMUNITY VERY COMPLEX
STUDIES WITH MACHINES THAT THEY
DON'T UNDERSTAND.
PORTABLE ULTRASOUNDS AND THINGS
LIKE THAT.
AND I THINK THAT LESSON IS A
LESSON OF EXTREME ULTRAISM.
THEY FEEL THEY HAVE SOMETHING TO
GIVE TO OTHERS AND TO GIVE TO
THE WORLD WHEN WE'RE TALKING
ABOUT GLOBAL HEALTH.
THOSE WOULD BE MY TWO TAKES ON
THAT.
>>THANK YOU FOR THAT AND
MARCELLA.
>>GOODNESS.
I'M NODDING IN AGREEMENT.
I FEEL SO MUCH GRATITUDE.
I HAVE IMMENSE GRATITUDE TO BE
ON THE WALK AND ON THE JOURNEY
WITH THE COMMUNITY PARTNERS.
IT IS JUST THE MOST REWARDING
WORK EVER.
AND I THINK SOMETHING THAT WE IN
THE DIFFERENT TABLES THAT I'M AT
WE WORK SO HARD TO DO AND IT'S
ALWAYS THAT WORK IN PROGRESS.
THAT POWER SHIFT TO GET TO THAT
POINT OF MATURITY WHERE
COMMUNITY IS LEADING AND WE'RE
THERE IN SERVICE.
THE CLOSER WE GET TO THAT THAT
IS THE GREATEST ACCOMPLISHMENT.
WHEN I'M SHOWING UP IN SERVICE
AND AT THE REQUEST OF A
COMMUNITY EXPERT THAT IS MY
POSITION.
>>YES.
AND I AGREE THAT THE PERSON WHO
ASKED THE QUESTION.
I AGREE WITH HIM.
EXCELLENT REFLECTIONS ON THAT.
I HAVE ANOTHER QUESTION FROM THE
Q&A.
WHEN WE TALK ABOUT GLOBAL HEALTH
THE RESEARCH ITSELF CAN BE
LOCAL.
LIKE MANY OF YOU DOING GLOBAL
HEALTH STUDIES BUT BEING THE
EXECUTING RESEARCHER LOCALLY,
HOW DO YOU NAVIGATE THE POSSIBLE
DISCONNECT BETWEEN WHAT DO AND
THE RESEARCHERS FROM ABROAD WHO
HAVE BEST INTENTIONS BUT TRY TO
DO RESEARCH NOT KNOWING LOCAL
REALITIES.
I'LL START WITH NIKHIL FOR HIS
THOUGHTS
>>THANK YOU.
IF YOU THINK OF THE CONCEPT OF
GLOBAL HEALTH RESEARCH THE
CONSTRUCT AT LEAST INITIATED WAS
INITIATED WITHIN A DEVELOPED
COUNTRY CONTEXT.
IT NEVER STARTED WITH A LOW AND
MIDDLE INCOME RESEARCHER
GENERATING IT AND GOING TO A
DEVELOPED COUNTRY.
THE FIRST THING IS IT STARTED
THE OTHER WAY AROUND.
A DEVELOPED COUNTRY RESEARCHER
THOUGHT OF SOMETHING AND CAME UP
WITH THE MONEY AND THOUGHT IT
WOULD BE GOOD TO WORK IN AN AREA
BEYOND THAT.
IT IS IMPORTANT THAT THE PERSON
THAT COMES IN PERHAPS WITH BOTH
FINANCIAL AND ACADEMIC HEFT IS
SORT OF -- HAS SIGNIFICANT
DISCUSSIONS WITH THE LOCAL
INVESTIGATOR.
THE LOW AND MIDDLE INCOME
INVESTIGATOR.
THAT IS A GENUINE QUESTION BUT
MAY BE AN IRRELEVANT QUESTION IN
THE CONTEXT OF WHAT THEY WANT TO
ADDRESS.
I'VE BEEN PARTICULAR FORTUNATE
IN THAT THEY'VE BEEN
EXCEPTIONALLY ACCOMMODATING AND
UNDERSTANDING AND WILLING TO
PARTICIPATE IN A DIALOGUE AND
LISTEN TO MY RANTS AND ALSO
ACCEPT THAT IT'S NOT A ONE-WAY
STREET IN TERMS OF CONVERSATION.
IT HAS TO BE A BI-DIRECTIONAL
CONVERSATION.
IT HAS TO BE DISCUSSED BASED ON
WHAT IS AVAILABLE.
AND BOTH SIDES HAVE TO HAVE THE
GRACE, HUMILITY AND MATURITY TO
ACCEPT WHEN PERHAPS THEIR POINT
OF VIEW MAY NOT BE THE MOST
APPROPRIATE POINT OF VIEW.
THAT HAS BEEN USEFUL.
SO IN THE SENSE -- WE DID A
WEBINAR CALLING IT DECOLONIZING
GLOBAL HEALTH RESEARCH.
TRYING TO PUT THROUGH THIS EXACT
PERSPECTIVE THAT EQUITY AND
EQUALITY BETWEEN INVESTIGATORS
WOULD BE REQUIRED FOR A
SUCCESSFUL DELIVERY OF THAT
PROJECT BUT A SUSTAINED
RELATIONSHIP WHICH GIVES RISE TO
MANY YEARS OF TOGETHERNESS AND
GOOD QUALITY WORK.
>>MARCELLA.
>>I COMPLETELY AGREE.
AND WE'VE HEARD -- SOME OF THE
NORTH/SOUTH DYNAMICS AT PLAY.
BUT HOW WE DECOLONIZE AND
DISRUPT AND SUSTAIN THOSE
PARTNERSHIPS.
THE WHIPLASH THAT CAN HAPPEN IN
THE RESEARCH WORLD WITH MAYBE
SHORT PROJECT PERIODS AND WE'VE
TALKED A LOT ABOUT ALL OF THE
WORK THAT HAS TO ESTABLISH IN
ESTABLISHING THE RELATIONSHIPS.
REALLY CRITICALLY IN
ESTABLISHING SOME OF THE --
CONTRACT RECALL UNDERSTANDING *
ALL OF THAT TAKES TIME.
AND I THINK A LOT -- THE
PRECIOUS THAT MAY CAUSE THE
CIRCUMSTANCE COUPLE CONVENTION
OF THE IMPORTANT DISCUSSIONS AND
ALSO INVESTIGATOR TO
INVESTIGATOR PARTNERSHIPS.
SO I'M GRATEFUL TO WHOEVER
RAISED THIS QUESTION.
IT'S A FUNDAMENTAL ONE.
>>MARSHALL
>>VERY IMPORTANT POINT.
BECAUSE THE OTHER THINGS THAT
YOU ALSO WANT COMMUNITIES TO
FEEL IS THAT THERE IS SOME LOCAL
INPUT IN THE RESEARCH BEING
DONE.
ONE OF THE WORSE THINGS IS THEY
BELIEVE THAT IT'S LIKE A PAY OFF
FOR THE INVESTIGATORS.
YOU'RE GETTING THE REWARD
AGLAREY AND SOMEBODY IS THROWING
THIS IN YOUR LAP.
IF YOU CREATE THAT ENVIRONMENT
IT CREATES ONE OF THE BIGGEST
BARRIERS YOU'LL HAVE TO ENGAGE
IN.
WHEN THEY BELIEVE THEY ARE A
PUPPET AND NOT NECESSARILY A
PART OF SOMETHING THAT YOU'VE
BROUGHT THEIR NEEDS AND LOCAL
CONCERNS INTO ACCOUNT AND YOU'RE
ESTABLISHING ADVOCATING FOR THEM
WHEN CARRYING OUT THIS KIND OF
WORK.
THAT IS A VERY, VERY, VERY
IMPORTANT POINT.
>>AND WELL END WITH YOU ANA
>>I'LL REPEAT WHAT I SAID AT
THE BEGINNING.
WE HAVE THE RESPONSIBILITIES AND
ONE OF THE RESPONSIBILITIES THAT
WE HAVE AS LOCAL RESEARCHERS IS
TOWARDS OUR COMMUNITY.
LIKE MARSHALL WAS SAYING.
SO PREPARING APPROPRIATELY AND
THEN FEEDBACK TO THE COMMUNITIES
AFTER THE WORK, DURING THE WORK
AS SOON AS SOME QUESTIONS OR
QUERY ARISE IT'S EXTREMELY
IMPORTANT AND SOMETHING THAT WE
SHOULD DO.
AND I THINK THAT WHEN WE ARE IN
A PARTNERSHIP AND WE ARE TRUE
PARTNERS EVERYTHING CAN BE
SORTED OUT BUT WE HAVE TO GET
THIS FEEDBACK FROM THE
COMMUNITIES AND OUR
COLLABORATORS.
>>THANK YOU SO MUCH AND WITH
THAT WE'RE AT TIME.
I'M GOING TO TURN IT OVER TO OUR
CHAIR TO CLOSE THE SESSION OUT
>>THANK YOU SO MUCH.
I WANT TO SAY THANK YOU.
THIS IS A CONVERSATION I ENJOYED
SO MUCH.
I LEARNED A LOT.
BEING HERE AND IT'S SO IMPORTANT
HOW WE'LL SHOWING UP AND THE
QUESTIONS THAT WE'RE ASKING AND
CONTINUE TO ASK.
HOPEFULLY OTHERS WHO HAVE JOINED
US TODAY HAVE BEEN ABLE TO
DERIVE NOT JUST THE KNOWLEDGE
BUT THE INSPIRATION AND THE WORK
THAT YOU'RE LIFTING AND
STEWARTING AND THE WHAT AND THE
HOW IS TREMENDOUS.
THANK YOU TO ALL OF THE
PANELISTS AND OF COURSE TO NIH
AND NHLBI.
>>THANK YOU SO MUCH FOR
CHAIRING OUR GREAT DISCUSSION.
AND YOUR COMMITMENT TO
BASKETBALL HEALTH.
WE APPRECIATE IT.
I'LL NOW TURN IT OVER TO
DR. ILIAS
>>THANK YOU FOR MODERATING AND
FOR THESE AMAZING PANELISTS.
THANK YOU SO MUCH FOR BEING SO
ENGAGED AND SO GREAT AT
PARTICIPATING IN OUR PANEL
DISCUSSION.
EVERY PANEL HAS BEEN BLOWING OUR
MINDS AND WE FEEL LIKE YOU DO
WHERE WE'RE TAKING SUCH MAD
NOTES AND HIGHLIGHTING THINGS.
SO HOPEFULLY THERE IS GOING TO
BE A LOT THAT WE CAN PROCESS
FROM THESE CONVERSATIONS BUT
THANK YOU AGAIN.
WE ARE AT BREAK NOW.
SO WE WILL BE GOING FOR LUNCH
BREAK UNTIL 1:30 AND WE WILL BE
COMING BACK FOR SESSION 5 WHICH
IS DATA SCIENCE AND COMMUNITY
ENGAGEMENT EFFORTS, PAST,
PRESENT AND FUTURE.
SO PLEASE JOIN US AGAIN IN 30
MINUTES FOR OUR NEXT SESSION.
THANKS, EVERYONE.
WELCOME BACK TO OUR DAY TWO OF
ADVANCING THE SCIENCE OF
COMMUNITY-ENGAGED HEALTH
DISPARITIES WORKSHOP.
WE'RE GOING START WITH OUR FIFTH
SESSION OF THE WORKSHOP AND
SECOND SESSION FOR TODAY WHICH
IS THE DATA SCIENCE AND
COMMUNITY-ENGAGEMENT EFFORTS,
PAST, PRESENT AND FUTURE.
WE HAVE AN EXCELLENT PANEL TODAY
AND I'LL HAND IT TO MY COLLEAGUE
HE'LL BE THE MODERATOR NOR
SESSION.
AMIR, THE FLOOR IS YOURS.
>>THANK YOU.
>>HELLO, EVERYBODY.
I'M EMIR A DATA SCIENCE PROGRAM
OFFICER AT THE CENTER FOR
TRANSLATIONAL RESEARCH AND
IMPLEMENTATION SCIENCE AT NHLBI.
I'M PLEASED TO CORDIALLY INVITE
YOU TO THIS SESSION ENTITLED
DATA SCIENCE AND COMMUNITY
ENGAGEMENT EFFORTS PAST, PRESENT
AND FUTURE.
WE HAD SUCH EXCITING TWO DAYS
ALREADY AND I'VE NOTICED ALL THE
PANELISTS AND PRESENTERS WERE
STRESSING THE IMPORTANCE OF DATA
SCIENCE AND COMMUNITY-ENGAGED
RESEARCH FOR HEALTH DISPARITIES
AND WE HAVE THREE PANELISTS
TODAY AND I WILL EXPLAIN WHY.
WE HAD DR. PHILLIP BOURNE
ORIGINALLY SIGNED TO THE SESSION
AND DUE TO THE TRAGIC EVENTS
AROUND ON THE UNIVERSITY OF
VIRGINIA CAMPUS HE WASN'T ABLE
TO JOIN AND WE HAD SOMEONE STEP
IN IN THE ROLE OF THE CHAIR FOR
THE SESSION TODAY.
AND WE AND WE HAD OUR OWN
STEPPING IN AS A PANELIST AND
WE'RE GRATEFUL FOR HER TO BE
ABLE TO DO IT ON SUCH A
LAST-MINUTE REQUEST.
I'LL INTRODUCE OUR CHAIR TODAY.
DR. IRENE A PHYSICIAN SCIENTIST
AND THOUGHT LEADER WITH OVER 20
YEARS OF DIVERSE REGIONAL AND
NATIONAL LEADERSHIP IN PRIMARY
CARE HEALTH CARE SYSTEMS,
BUSINESS AND COMMUNITY.
AND WAS WITH IBM WATSON HEALTH
AND WE HAVE DR. ALI MOKDAD AT
THE UNIVERSITY OF WASHINGTON.
AND PRIOR TO HIS INVOLVEMENT IN
HIS CURRENT ACTIVITIES,
DR. MOKDAD WORKED AT THE CDC AND
IS A WELL-KNOWN RESEARCHER AND
WELL PUBLISHED IN THE
GROUNDBREAKING RESEARCH ON THE
LOCAL LEVEL DISEASE TRENDS AND
LEADING RISK FACTORS FOR POORER
HEALTH AND HIS WORK ON OBESITY
IS AMONG THE MOST HIGHLY CITED
IN THE FIELD.
LAST BUT NOT LEAST, OL GA
BRAZHNIK SYNERGIZES THE TEAM AND
HAS APPROACHES IN BIO MEDICAL
COMMUTING AND INFORMATICS AND
DATA AND KNOWLEDGE INTEGRATION
AND LED INITIATIVES IN OPEN
SCIENCE AND INNOVATION.
WE'LL HAVE THREE QUESTIONS POSED
TO THE PANELISTS.
BECAUSE OF THE NAME OF THE
SESSION THAT DEALS WITH PAST,
PRESENT AND FUTURE, WE WILL HAVE
THE FIRST QUESTION ON THE
CHALLENGES ON DATA SCIENCE
SPECIFICALLY IN THE
COMMUNITY-ENGAGED HEALTH
DISPARITIES RESEARCH.
THE SECOND QUESTION WILL BE WHAT
ARE THE OPPORTUNITIES THAT OUR
EXPERTS SEE EXIST IN EMPOWERING
THE COMMUNITY-ENGAGED HEALTH
DISPARITIES AND AS THE THIRD
QUESTION WE WILL ADDRESS WHAT IS
ON THE HORIZON FOR THE DATA
SCIENCE AS WE SEE IN THE NEAR
FUTURE AND THE THREE TO
FIVE-YEAR PERSPECTIVE AND FOR
THE PERSPECTIVE OF FIVE TO 10
YEARS AND EVEN FURTHER.
WITH THAT I'D LIKE TO WELCOME
DR. IRENE AND PLEASE TAKE IT
AWAY.
>>THANK YOU, SO MUCH, DR
DR. KHATIPOV.
>>I'D LIKE TO THANK THE
ORGANIZERS FOR PULLING TOGETHER
THIS TOPIC AND INCLUDING THE
ROLE OF DATA SCIENCE IN
ADVANCING COMMUNITY-ENGAGED
HEALTH DISPARITIES RESEARCH.
HONORED TO VERY THE OPPORTUNITY
TO ADD TO THE ONGOING
CONVERSATIONS FROM THE VARIOUS
EXPERTS AND THOUGHT LEADERS THAT
HAVE BEEN INVITED TO BE PART OF
THE PANEL.
AND I WANT TO ACKNOWLEDGE THE
INCREDIBLE WORK DONE IN
ADVANCING THE SCIENCE OF
COMMUNITY-ENGAGED RESEARCH.
THAT HAS ALLOWED US TO LOOK AT
COMMUNITY-ENGAGED RESEARCH AND
CHALLENGES AND OPPORTUNITIES AND
RECOMMENDATION.
AND I WANT TO PROVIDE CONTEXT
FOR THE DEFINITION OF DATA
SCIENCE AND WE KNOW THAT DATA
SCIENCE IS THE METHODS WE USE TO
LEARN FROM DATA BUT WE KNOW NOW
THAT THE HEALTH CARE ECO SYSTEM
OR THE HEALTH ECO SYSTEM HAS
GENERATED LARGE AMOUNTS OF DATA.
THIS HAS BEEN DRIVEN BY ALL THE
VAST AMOUNT OF BIOMEDICAL
RESEARCH DATA, PUBLIC HEALTH
DATA SETS, HOSPITAL DATA, SOCIAL
DETERMINATES OF HEALTH AND
COMMUNITY-ENGAGED HEALTH DATA.
THEY ARE ALL MEANINGFUL BUT WE
KNOW THEY'RE SILOED.
ALL THE DATA POINTS ARE RELEVANT
AND CRITICAL BUT IN MASSIVE
AMOUNTS AND SO COMPLEX TO BE
HANDLED BY OUR TRADITIONAL
STATISTICAL ANALYSIS.
SO WE'RE HERE BASICALLY TALKING
ABOUT THE ADVANCED ANALYTICS OR
ARTIFICIAL INTELLIGENCE MACHINE
LEARNING METHODS USED TO SOLVE
THE CHALLENGES IN IMPROVED
HEALTH OUTCOMES AND FOR
POPULATIONS THAT ARE
EXPERIENCING SOCIAL DISADVANTAGE
OF ADVERSE OUTCOMES.
IN THE LARGER DOMAIN, OUR ROLE
AS DATA SCIENTISTS, AS
RESEARCHERS, ESPECIALLY WORKING
IN THE SECTION OF DATA IS TO
EXPLORE HOW DATA WHETHER IT'S
FROM CLINICAL TRIALS, WHETHER
IT'S FROM REAL WORLD EVIDENCE
DATA SETS, HOW IT'S BEING
INTERPRETED AS SCIENTIFIC
EVIDENCE.
WE WANT TO DISCERN DATA FROM
VAST RESEARCH FROM THE COMMUNITY
CONSULTATION TO COMMUNITY
ENGAGEMENT TO COMMUNITY-BASED
PARTICIPATORY RESEARCH IS BEING
TRANSLATED TO SCIENTIFIC
EVIDENCE.
NOT ONLY HOW IT'S INTERPRETED AS
SCIENTIFIC EVIDENCE BUT ALSO HOW
IT IMPACTS ONGOING SCIENCE, HOW
IT IMPACTS SCIENCE AND POLICIES
AND ESPECIALLY ALLOCATION OF
RESOURCES FOR HEALTH.
IN DATA WE WANT TO KNOW HOW THE
DATA -- BECAUSE WE KNOW IT'S
INCREASINGLY BEING RECOGNIZED AS
THE PUBLIC GOOD, HOW IT'S BEEN
CAPTURED, HOW IT'S BEEN ENCODED
IN OUR TECHNOLOGY.
AND LOOKING AT COMMUNITY BASED
PARTICIPATORY RESEARCH AND HAVE
A.I. MACHINE LEARNING METHODS
AND RISK STRATIFICATION, HOW
THEY RELY HEAVILY ON
COMPREHENSIVE AND RELEVANT DATA
AND FINALLY LOOKING AT HOW WE'RE
ESTABLISHING ETHICAL STANDARDS
AND GOVERNING THE COLLECTION,
DESIGN, MANAGEMENT AND USE OF
DATA AND DATA-DRIVEN
TECHNOLOGIES TO IMPROVE HEALTH
OUTCOMES FOR EVERYONE AND FOR
SOCIAL GOOD.
IN THE CONTEXT OF THE
CATEGORIES, SCIENTIFIC EVIDENCE,
THE STRUCTURE AND HOW WE'VE
LOOKED AT IT AS PUBLIC GOOD AND
HOW WE LOOK AT PREDICTIVE MODELS
AND ENSURING ETHICAL STANDARDS.
THESE ARE ALL DISCUSSIONS WE'RE
GOING TO COVER THE TOPICS
ALIGNED WITH THE PAST, PRESENT
AND FUTURE AND START WITH DATA
SCIENCE AND WILL START WITH
DR.DR
DR. MOKDAD IN TERMS OF WHAT ARE
THE CHALLENGES FOR DATA SCIENCE
AND COMMUNITY ENGAGED HEALTH
DISPARITIES RESEARCH?
AND THEN WE'LL TURN IT OVER TO
DR. BRAZHNIK.
>>THANK YOU, AT LEAST CALL ME
ALI.
I'D LIKE TO STEP BACK INTO WHAT
YOU SAID AT THE INTRODUCTION IS
IMPORTANT AND I WORK IN GLOBAL
HEALTH HERE AND IN THE UNITED
STATES AND I'VE SEEN IT IN MANY
PLACE WHERE'S DATA IS COLLECTED
ON A PIECE OF PAPER AND WE COME
TO THAT PLACE AND SAY WE WANT TO
MAKE IT ELECTRONIC AND SEND IT
ON.
BUT THERE IS NO INTENTION TO
WHAT WE COLLECT.
IF YOU HAVE A SYSTEM THAT'S
CURRENTLY RIGHT NOW AND IT'S NOT
CAPTURING THE RIGHT DATA AND IF
YOU HAVE A SYSTEM RIGHT NOW AND
YOU DON'T PUT IN PLACE PEOPLE
FOR ANALYZE THAT DATA AND
FEEDBACK THE COMMUNITY FOR
ACTION MAKING IT ELECTRONIC IS
NOT GOING TO HELP.
SO WHEN YOU COME TO THE
CHALLENGES AND LET'S BE SPECIFIC
AND BY THE WAY I AGREE WITH YOU.
I'M PLEASED AND HAPPY THAT NIH
IS INVESTING IN COMMUNITY HEALTH
THROUGH SEVERAL PROGRAMS I'M
AWARE OF, WE IN ACADEMIA WE GET
FUNDING FROM NIH AS
DISEASE-SPECIFIC RISK FACTS I'M
PLEASED TO SEE ACTIVITIES AT NIH
AND FOCUS ON THEM.
WE COME BACK TO WHAT YOU REALLY
WANT TO TALK ABOUT IN THE U.S.
MANY OF THE DATA ELEMENTS WE
NEED TO MAKE COMMUNITY-BASED
INTERVENTIONS AND HAVE GENERAL
EXAMPLES.
WE'RE STRUGGLING RIGHT NOW IN
ONE OF OUR PROJECTS TO BREAK
DOWN FOR EXAMPLE ASIAN AND
PACIFIC DATA AND DATA COLLECTED
AS ASIAN AND PACIFIC ISLANDER
AND LOOK AT THE SPECTRUM OF
HEALTH EXPECTANCY AND MORTALITY
AND WE DON'T MUCH DATA AND
THERE'S NO SURVEY RIGHT NOW TO
UNDERSTAND THE PROBLEMS THEY ARE
FACING.
AND MANY COMMUNITIES, YOU KNOW,
SMALL COMMUNITIES THAT ARE
DISADVANTAGED, MANY SURVEYS
DON'T CAPTURE WHAT THEY HAVE.
AND WE IN THE U.S. WANT TO DO
COMMUNITY ENGAGEMENT.
SO THE FIRST STEP TO ANSWER YOUR
QUESTION WILL BE WE NEED FIRST
TO ANALYZE THE DATA WE HAVE
RIGHT NOW AND MAXIMIZE THE
UTILITY BUT WE NEED A ROAD MAP
TO SAY WHAT DATA WE NEED TO
COLLECT IN ORDER TO IMPROVE
COMMUNITY HEALTH AND THE LOCAL
COMMUNITY AND HOW WE SHOULD DO
IT AND REMEMBER MANY OF THESE
COMMUNITIES THERE'S SO MUCH DATA
GOING ON WE KNOW WHAT THEY BUY
AND WHERE THEY GO AND HOW THEY
MOVE, WE HAVE SYSTEMS WE WORK
WITH BUT THE LACK OF DATA IS
IMPEDING OUR ABILITY TO HELP
COMMUNITIES.
OVER.
>>THANK YOU, ALI.
OLGA, DO YOU HAVE ANYTHING TO
ADD TO THIS?
>>CAN YOU HEAR ME OKAY?
>>YES, PERFECT.
>>WE WORKED WITH A PROGRAM WITH
THE LARGEST INVESTMENT FROM NIH
INTO CLINICAL RESEARCH.
ALL THE COMMUNITY ENGAGEMENT AND
DATA SCIENCE IS CLOSE TO MY
HEART.
MOST PEOPLE HAVE CELL PHONES.
IT MAKES COLLECTING DATA ON
INDIVIDUAL IN COMMUNITY VERY
EASY.
SO WE DATA AND THE CHALLENGE IS
IF YOU LOOK AT THE SOCIAL MEDIA
SUCH AS FACEBOOK, LINKEDIN,
INSTAGRAM AND SO ON, PEOPLE ARE
SHARING THEIR PRIVATE
INFORMATION EASILY.
IT'S NOT SO EASY WHEN WE LOOK AT
THE MEDICAL DOMAIN.
HERE'S PROBABLY A PARADIGM WE
NEED TO EITHER CHANGE OR BRING
UP THE DATA LITERACY AND DIGITAL
LITERACY IN THE COMMUNITY AND IN
THE ENTIRE WORLD.
AND WE HAVE CONSENT WE'RE NOW
SIGNING AND I REMEMBER I HAD TO
JOKE ABOUT IT THAT A YOUNG
PEOPLE SIGNED OFF ON THEIR FIRST
BORN WHEN THEY SIGNED AN
AGREEMENT OF COURSE IT WAS A
JOKE JUST SAYING HOW DIFFICULT
IT IS TO READ THROUGH THE
AGREEMENT.
AND THIS PRACTICE IS KIND OF THE
TOPPING ON THE CAKE.
HOW MANY PEOPLE READ THE ENTIRE
DOCUMENT BEFORE SIGNING?
WE HAVE TO SPEAK THE LANGUAGE OF
THE PEOPLE WE'RE TALKING TO AND
WHO WE WANT TO COLLECT THE DATA
FROM.
SO THEY UNDERSTAND THE
CONSEQUENCES OF ASSIGNING
DOCUMENTS.
AND IN TALKING TO COMMUNITIES
THAT EXPERIENCE HEALTH
DISPARITIES ESPECIALLY HARD
INCLUDE RACIAL AND ETHNIC
MINORITY GROUPS, PEOPLE WITH LOW
SOCIO ECONOMIC STATUS AND
MINORITY GROUPS AND SEXUAL
GROUP.
AND WE LOOK AT RESEARCHERS WHO
WORK ON BUILDING THEIR CAREERS
AND COLLECT DATA FOR RESEARCH
AND PUBLICATION BUT THEN THEY
TAKE THE DATA AND SOMETIMES
DON'T BRING IT BACK AND THE
INDIVIDUALS DON'T BENEFIT FROM
THE DATA EXCEPT THEY'RE DATA
COULD BE EXPOSED SOMEWHERE.
I REALLY LIKE THE PHRASE THE
BIGGEST CHALLENGE IN EVERY
RELATIONSHIP IS TO UNDERSTAND
THAT THE OTHER PERSON IS REAL.
WE HAVE TO RESPECT EACH OTHER
AND RESPECT EACH OTHER'S GOALS.
THE GOAL OF RESEARCHERS BUT THEY
HAVE TO BE RESPECTFUL TO THE
BALANCE OF THE COMMUNITY.
OUR DATA GROWS ENORMOUSLY EVERY
DAY AND I HAVE BEEN HEARING THIS
FOR YEARS, WE NEED MORE DATA AND
MORE FUNDING.
MORE TO CURATE OUR DATA AND MY
QUESTION IS MAYBE INSTEAD OF
COLLECTING MORE DATA WE NEED A
BETTER LEARNING SYSTEM.
AND A LEARNING SYSTEM THAT WILL
MAKE US AWARE OF WHAT KIND OF
DATA WE NEED.
AND SO THE SYSTEM THAT WILL HELP
US TO ADAPT TO CHANGES THAT WILL
HELP US TO EVOLVE WITH THE WORLD
AROUND US AND SO THE QUESTION IS
NOT SO MUCH ABOUT DATA PER SE,
BUT ABOUT LEARN ABOUT THE DATA.
AND I HAVE QUESTIONS WE CAN GO
TO LATER.
>>CAN I SAY SOMETHING VERY
QUICK.
I LOVE SHE SAID BUT WE
DEFINITELY ALL SAY THE SAME
THING.
WE DEFINITELY NEED TO MAKE SURE
WE CONNECT ALL THE DATA THAT'S
BEEN COLLECTED AND MAXIMIZE THE
USABILITY.
THE KEY ISSUE WE WANT THE DATA
TO SPEAK TO POLICY.
AT THE END OF THE DAY THERE HAS
TO BE ACTION.
THEN AUTOMATICALLY WHEN YOU SAY
I WANT DATA TO LEAD IT ACTION IN
THE COMMUNITY THEN YOU WANT TO
INVOLVE THE COMMUNITY AND YOU
WANT TO INVOLVE THE POLICY MAKER
IN THAT COMMUNITY OR PEOPLE IN
CHARGE IN THAT COMMUNITY BECAUSE
IT'S A CIRCLE.
THEY NEED TO TELL YOU WHAT TO
COLLECT AND HAVE THE DATA TO ACT
ON IT.
SOMETIMES THE PRIORITY AND
ISSUES THEY CAN FIX IS DIFFERENT
AND SAY THAT'S THE PROBLEM.
YOU CAN GO TO THE COMMUNITY AND
DO THE JOB AND SAY OBESITY IS
NUMBER ONE AND LET'S TALK TO YOU
ABOUT OBESITY AND THE COMMUNITY
WILL SAY, NO, I WANT TO TALK
ABOUT SOMETHING ELSE AND YOU
NEED THAT ABILITY FOR YOU AS A
DETE COLLECTOR TO FEED INTO WHAT
THE COMMUNITY NEEDS IN TERMS OF
POLICY THEY FEEL THEY CAN ACT
UPON IMMEDIATELY.
FOUR COMMUNITY TO OWN THE DATA
AND ACT ON IT, THEY HAVE TO OWN
IT AND TO LOOK AT THE DATA AND
ANALYZE IT OR MAKE IT IN A WAY
THAT IS VISUALIZATION AND YOU
DON'T HAVE TO BE A GENIUS IN
STATISTICS BUT YOU CAN DRILL
DOWN THE DATA AND LOOK AT IT
IT'S AN IMPORTANT TO GET THE
COMMUNITY INVOLVED.
>>FOR DATA SCIENCE AND
COMMUNITY ENGAGED RESEARCH YOU
TALKED ABOUT ETHNICITY, DATA
LITERACY, DIGITAL LITERACY AS
WELL BUT I SHOULD ALSO SEE THAT
DATA SCIENCE AT ITS CORE SHOULD
BE AN INTERDISCIPLINARY FIELD
LIKE COMMUNITY ENGAGED HEALTH
DISPARITIES RESEARCH IS GROUNDED
IN THE VISION TO IMPROVE HEALTH
AND OUTCOMES FOR ALL POPULATIONS
AND ESPECIALLY SOCIALLY
DISADVANTAGED.
THE DATA SCIENCE AGENDA SHOULD
ALSO BE ABLE TO GENERATE
MEANINGFUL SCIENTIFIC EVIDENCE
AND HAVE ACCURACY ALSO FOR THE
GOAL FOR ACHIEVING OPTIMAL
HEALTH AND OUTCOMES FOR ALL.
THE CHALLENGE IS THESE TWO
RESEARCH FIELD HAVE NOT REALIZED
THEIR POTENTIAL SYNERGIES IN
COMING TOGETHER MAYBE PERHAPS OF
LACK OF EXPERTISE AND IT'S BUILT
ON TRUST WITH COMMUNITIES AND
DEVELOPING A WHOLE LEARNING
PROCESS OF ENGAGEMENT BETWEEN
THE RESEARCHERS AND THE
COMMUNITY.
AND EMPHASIZED COMMUNITY SOCIAL
COHESION, SOCIAL CAPITAL, SOCIAL
WELL-BEING.
THIS IS WHERE DATA SCIENCE
SHOULD BE INCENTIVIZED TO DO.
SHOULD BE INCENTIVIZED TO ALIGN
WITH COMMUNITY ENGAGED RESEARCH
TO REALIZE THE FULL POTENTIAL.
FOR EXAMPLE, WITH THE QUESTIONS
IN DATA SCIENCE THEY SHOULD
PRIORITIZE RESEARCH QUESTIONS
THAT MATTER TO THE COMMUNITY.
AND THE CHALLENGES THAT IT'S NOT
BEING DONE YET TO THE FULL
POTENTIAL.
THEY SHOULD BE ENGAGED IN
HELPING TO ENGAGE SCIENCE.
THAT'S ONE OF THE CHALLENGES
THAT HAS NOT BEEN DONE.
THAT'S WHY WE'RE IN THIS STATE
THAT WE ARE.
AND YOU TALKED ABOUT THE
CHALLENGE FOR DATA SCIENCE AND
RESOLVING ISSUES AROUND DATA
OWNERSHIP, RESPONSIBLE DATA
SHARING.
BOTH SCIENTIFIC ENDEAVORS ARE TO
PROMOTE EQUITY AND HEALTH AND
IMPROVE WELL-BEING.
WHEN YOU ASK BOTH DISCIPLINES
AROUND DATA SHARING FOR EXAMPLE
OR HOW DATA IS CONTROLLED, WHO
IS ACCOUNTABLE FOR THE DATA, OR
WHO WAS ENTRUSTED TO PROMOTE
RESPONSIBLE DATA, THEY MAY
ANSWER DIFFERENTLY.
FOR COMMUNITY ENGAGED RESEARCH,
THE DATA WILL LARGELY BELONG TO
THE COMMUNITY AND IT'S ACCEPTED
AS COMMUNITY-OWNED ASSET.
FOR THE MOST PART AS THE
COMMUNITY THAT PROVIDES THE DATA
TO ENHANCE SCIENTIFIC RESEARCH.
THERE'S POWER SHARING AND THE
RESEARCH TEAMS ENTRUSTED TO
PROMOTE RESPONSIBLE DATA
SHARING.
AND THE DATA SCIENCE COMMUNITY
ON THE OTHER HAND HAS A GOAL TO
DEMOCRATIZE DATA AND MAKE IT
TRANSPARENT.
AND TRANSFER THE DATA FROM THE
COMMUNITY TO THE SOCIETY.
IT'S ALL FOR GLOBAL AND SECONDLY
USED AND BENEFIT FOR EVERYONE.
I THINK IN THE METHOD OF THE
TRANSFERRING AND GENERATING HUGE
DATA ASSETS, THERE MAY BE MISSED
OPPORTUNITY TO THINK ABOUT OKAY,
LET'S GO BACK AND REALIZE THAT
THESE -- WHAT WE ARE DOING HERE
ALSO NEEDS TO GO BACK TO BENEFIT
THE COMMUNITY.
WE MAY LOOK AT ETHICAL AND LEGAL
COMPLICATIONS.
AND THEY NEED TO ALIGN WITH DATA
OWNERSHIP.
I'LL GO ON TO THE NEXT BECAUSE
THERE'S SO MUCH TO SAY IN
CHALLEN
CHALLENGES.
>>THE BEST THING IS TO LOOK ATE
THE COMMUNITY AND DATA AND WHAT
WE LEARN FROM COVID-19 AND EVEN
WHEN THE VACCINE CAME WE SHOULD
HAVE INVOLVED THE COMMUNITY
EARLY ON.
AND WE LOOKED AT THE SOLUTION
AND WHAT SUCCESS MEANS.
THE COMMUNITY WILL GET VERY MUCH
ENGAGED.
I CAN GIVE YOU A SIMPLE EXAMPLE
DURING COVID-19.
THERE WAS A LOT ABOUT TE VACCINE
AND EVERYBODY IN MY FAMILY KNOW
WE ONLY HAVE ONE DOSE AND
EVERYBODY WAS ASKING ABOUT THE
VACCINE.
ALL I SAID IS MY DAUGHTER TOOK
THE VACCINE.
THAT LESSON IS VERY IMPORTANT
FOR US AS WE'RE SCIENTIST OR
WHATEVER WE DO IN DATA.
TO SHOW THAT I DID SOMETHING I
WOULD DO MYSELF THAT MY DAUGHTER
TOOK IT IS IMPORTANT TO SHOW AT
THE COMMUNITY LEVEL AND THE DATA
WILL GUIDE YOU FOR THE DECISION
AND WORK WITH THE COMMUNITY AND
THE COMMUNITY OWNS THAT.
IT'S A COMMUNITY DECISION AND
THAT'S THE SUCCESS.
OVER.
>>LOOKING AT HEALTH DISPARITIES
RESEARCH.
>>I AGREE WITH ALI.
AND WE CAN COLLECT DATA ON
STIGMATIZED COMMUNITIES.
WE CANNOT EVEN COLLECT LOOKING
AT GEOLOCATION BECAUSE PEOPLE
ARE AFRAID OF HATE CRIMES AND IF
WE DON'T LOOK AT THIS WE'LL ALL
BE IN TROUBLE.
IT'S VERY MUCH CONNECTED WITH
THE ENTIRE SOCIETAL VALUES.
AND POLICY.
AND WE'VE BEEN TALKING ABOUT
THIS FOR A LONG TIME BY NOW.
I THINK BUILDING TRUST IS VERY
IMPORTANT.
WE HAVE TO BUILD SYSTEMS AND
PROCESSES THAT WE IN THE
COMMUNITY TRUST.
THERE IS NOW A DEVELOPMENT OF
TRUSTWORTHY A.I. PRINCIPLES AND
THEY HAVE CREATE THE A.I.
PLAYBOOK THAT IDENTIFIES KEY
COMPONENTS OF TRUSTWORTHY A.I.
AND ML IN THE CONTEXT OF HEALTH
CARE.
THIS INCLUDES MODELS BEING FAIR
AND IMPARTIAL AND EXPLAINABLE
AND ACCOUNTABLE AND SAFE AND
SECURE.
THE PRINCIPLE HOW WE IMPLEMENT
IT.
THERE'S DETAILS AND THE
IMPLEMENTATION IS OF COURSE
DIFFICULT BUT AGAIN WE HAVE TO
TRY TO BUILD THE MODEL PROPERLY
MAKE SURE THAT WHAT WE GET FROM
A.I. FROM APPLICATIONS WE CAN
TRUST IN THE END.
A LOT OF PEOPLE DON'T TRUST
MACHINE LEARNING AND ARTIFICIAL
INTELLIGENCE BECAUSE IT'S A
BLACK HOLE.
WE DON'T KNOW WHAT'S GOING ON
INSIDE AND WITH THE
COMPUTATIONAL APPROACH TAKE INTO
CONSIDERATION COMMUNITY VALUES.
WE ALL COME FROM DIFFERENT
CULTURAL BACKGROUND AND IN SOME
CULTURES, MANY THINGS ARE NOT
APPROPRIATE EVEN FOR US.
AND WOMEN FROM CERTAIN COUNTRIES
ARE DIFFERENT.
WE HAVE TO BE FACTUAL AND BUILD
MODELS BASED ON THE COMMUNITY
VALUES.
AND IN DISPARITIES WE HAVE NOW
AND LIKE ALI SAID WE DON'T GET
THE RIGHT DATA WHEN WE FOCUS ON
DISPARITY YOU GAVE THE EXAMPLE
OF COMMUNITIES LIKE ANSWER
STRAIGHT AND YOU'RE ASKING THE
QUESTION BUT IT DOESN'T PROVIDE
REAL ANSWER BECAUSE YOU CANNOT
SEPARATE THIS TO DIFFERENT
PLACES.
SOW THE OTHER OPPORTUNITY IS
FOCUSSED ON WELL-BEING AND
RESILIENCE.
NIH HAS HISTORICALLY BEEN
FOCUSSED ON DISEASES AND IGNORED
THIS OPPORTUNITY UNTIL NOW UNTIL
RECENTLY AND I THINK NOW IT
PROVIDES A HUGE OPPORTUNITY FOR
EXAMPLE NHLBI ADDED RESILIENCE
IN THE STRATEGIC VISION.
BUT HOW DO WE BRING FOCUS TO
WELL-BEING?
CAN WE EVEN DEFINE HEALTH?
WHAT DATA DO WE NEED TO PROVIDE
PEOPLE WITH ASSURANCE OR
CORRECTION OF THEIR FLIGHT PATH?
WHAT SHOULD WE FOCUS ON AND CAN
WE EVEN DESCRIBE WHAT HEALTHY
HUMAN BEINGS, HEALTHY AND
THRIVING HUMAN BEINGS LOOK LIKE?
MAYBE IT'S NOT ONLY ABOUT BLOOD
PRESSURE BUT MENTAL FOCUS AND
GOALS AND MORE THAN THAT IT'S
ABOUT REALIZATION AND POTENTIAL
THE PERSON BRINGS TO THE PLANET.
SO I'M HAPPY TO SEE
COLLABORATIONS AMONG DIFFERENT
AGENCIES.
DURING THE PANDEMIC MANY
AGENCIES REALIZED OUR
COMMUNITIES MANY OF OUR
COMMUNITIES WERE NOT RESILIENT
ENOUGH.
SO AND IF WE HAVE RESILIENT
INITIATIVES BROUGHT TOGETHER
MORE THAN 35 FEDERAL AGENCIES TO
BRING TOGETHER DIFFERENT OFFICES
THAT ARE NOT FOCUSSED ON SOCIAL
DETERMINATES OF HEALTH BUT
FOCUSSED ON VITAL CONDITIONS.
LIKE WHEN YOU THINK ABOUT LACK
OF SOMETHING THAT'S SOCIAL
DETERMINATES OF HEALTH AND WHEN
YOU THINK ABOUT ABUNDANCE OF
SOMETHING YOU THINK ABOUT THE
VITAL CONDITION AND THIS FEDERAL
PLAN IS BEING DEVELOPED AND
REPRESENTATIVES FROM THE FEDERAL
AGENCIES ARE WORKING TOGETHER ON
DEFINING WHAT RESILIENCE IS AND
HOW WE CAN APPROACH IT.
I THINK THIS PROVIDES ENORMOUS
OPPORTUNITY FOR DATA COLLECTION
BY OTHER AGENCIES AND BRINGING
IT TOGETHER FOR THE RESEARCH
PURPOSES.
ALSO HERE.
THANK YOU VERY MUCH.
>>I NEED TO SAY SOMETHING QUICK
ABOUT THE COMMUNITY YOU NEED TO
THINK ON IMPLEMENTATION.
THIS IS VERY IMPORTANT.
AND AGAIN I'M SO HAPPY TO SEE
NIH IS INVESTING IN TRANSLATION.
AND LET'S BE REALISTIC AND IF
YOU COME TO A COMMUNITY AND SAY
WITHOUT KNOWING THE PARTICULAR
COMMUNITY AND WHAT WILL WORK IN
THAT COMMUNITY THERE'S AN
IMPLEMENTATION AND TRANSITION
THE RECOMMENDATION IS FRESH
FRUIT AND VEGETABLES AND IT'S A
FOOD DESERT AND THE ONLY WAY TO
DO IT IS GETTING IN A BUS AND
GOING LONG DISTANCE TO BUY MORE
EXPENSIVE FRUITS AND VEGETABLE.
EXERCISE.
THERE'S IN PLACE TO DO THIS.
UNLESS YOU UNDERSTAND THAT IN A
COMMUNITY YOUR RECOMMENDATION
FOR IMPLEMENTATION AND
TRANSLATION IS GOING TO FAIL AND
IT'S VERY IMPORTANT FOR US IN
ORDER TO EMPOWER THE COMMUNITY
FOR US TO UNDERSTAND THE ISSUES
THE COMMUNITIES FACE AND OUR
SOLUTION CANNOT BE FOR EVERY
NEIGHBORHOOD IN THE COUNTY TO
HAVE THE SAME SOLUTION OR SAME
TRANSLATION OR IMPLEMENTATION.
IT HAS TO TAKE INTO ACCOUNT AND
WE SITTING IN THE PUBLIC OFFICES
WILL NOT GET THERE UNLESS WE GO
ON THE GROUND AND TALK TO THEM
AND UNDERSTAND FROM THEM WHAT
ARE THE ISSUES.
>>ABSOLUTELY.
I THINK YOU BOTH TALKED ABOUT
GREAT OPPORTUNITIES THAT EXIST.
EXAMPLES BEING IMPLEMENTING
POLICIES THAT GOVERN ETHICAL
RESPONSIBLE A.I., LOOKING AT
COLLECTING DATA THAT FOCUSES ON
WELL BEING AND RESILIENCE OF
COMMUNITY AND WHEN YOU TALK
ABOUT COMMUNITIES AND
TRANSLATIONAL BI-DIRECTIONAL
DATA CLOSELY INTERTWINED WITH
COMMUNITY ENGAGED RESEARCH DATA
SCIENCE HAS A LOT TO LEARN FROM
FRAMEWORKS DEVELOPED IN
SUCCESSFUL HEALTH DISPARITIES
RESEARCH.
AND TO PROMOTE JUSTICE, SOCIAL
JUSTICE, TO THE PROCESSES
BETWEEN DATA SCIENTIST AND
COMMUNITY RESEARCHERS AND
RESEARCH RECOGNIZE THE CULTURAL
AWARENESS.
THE PREFERENCES, THE VALUES, THE
CONSCIOUS OR UNCONSCIOUS BIAS
EXIST IN HEALTH CARE AND
INTEGRATE IN THE DATA.
THAT'S WHERE THERE'S MISSING
DATA CAPTURING THE VALUES AND
PREFERENCES OF THE COMMUNITY.
AND FOR DATA SCIENCE TO ALIGNED
AND A HUGE OPPORTUNITY FOR
WORKFORCE DEVELOPMENT AND
DIVERSITY AND ADDRESSING
DISPAR
DISPARITIES.
LET'S GO INTO THE LAST FINAL
QUESTION OR DISCUSSION AROUND
THE HORIZON FOR
COMMUNITY-ENGAGED RESEARCH.
WHAT SHOULD BE YOUR PROPOSED --
YOU CAN TALK ABOUT FUTURE OF
DATA SCIENCE OR SHARE ONE OR TWO
STRATEGIES YOU THINK IT'S
PARTICULARLY IMPORTANT TO THINK
ABOUT TO MAKE SURE WE ARE
ADDRESSING IT TO ADVANCE THE
SCIENCE OF COMMUNITY COMMUNITY
ENGAGED RESEARCH AND DATA
SCIENCE.
BECAUSE I KNOW NHLBI WANTS TO
COME UP WITH SOME OPPORTUNITIES
OR RESEARCH QUESTIONS STO BUILD
ON THIS AND BUILD ON DATA
SCIENCE METHODS OR LOOK AT
COMMUNITY-ENGAGED SCIENCE.
I CAN START WITH OLGA AND ALI
AND THEN WRAP UP.
>>THANK YOU.
AND MY FAVORITE EXAMPLE IS MAYBE
A LITTLE BIT BASIC BUT WORKING
WITH DATA AND EVIDENCE FOR ME IS
IMPORTANT LOOKING AT MINORITY
REPORTS WHERE TOM CRUISE MOVED
PIECES OF EVIDENCE FROM THE
SCREEN AND PLACED IT OUT HOW
THEY FIT TOGETHER.
THAT'S HOW I KEY THE HEALTH CARE
AND WE HAVE THIS IN OUR DATA.
AND WE ARE THE CREATORS OF OUR
LIFE AND HEALTH.
WE CAN SET OUR VALUES AND THEY
HAVE LONG AND SHORT LONG-TERM
OUTCOMES.
WE ALSO COULD SEE THE IMPACT
THAT OUR DECISIONS RIGHT NOW
ABOUT OUR FUTURE IN HEALTH HOW
IT IMPACTS OUR LOVED ONES,
COMMUNITY, SOCIETY AND THE WHOLE
WORLD.
AND WE CAN COME TO THE RESULTS
AND CAN REVERSE ENGINEER THE
FINAL GOAL INTO OUR CURRENT WELL
BEING.
AND FOR SOME REASON VERY FEW ARE
IN DATA SCIENCE AND SOME TAKE IT
FOR GRANTED AND WHEN WE IMAGINE
THE FUTURE WITH EVERYTHING WE
HAVE RIGHT NOW PLUS WE LOOK AT
THE STATE.
THIS IS ONE EXAMPLE FOR THE
FUTURE.
OF COURSE TECHNOLOGIES AND WE
LOOK AT THE END THAT SUGGESTS
INTERVENTION AND CONNECTS US TO
THE PROFESSION WHEN NEEDED AND
COMFORT OF WHEN WE NEED A HUG
AND SO ON.
I'M TALKING ABOUT ARTIFICIAL
INTELLIGENCE AND AND LOOK AT
HABITS THAT CAN GENTLY FRAME US
TO ADOPT HEALTHY BEHAVIORS.
THAT WAS MY SECOND AND I DON'T
KNOW IF IT'S TWO YEARS AWAY OR
10 YEARS BUT I HOPE TO BE
COMFORTED BY THE ENVIRONMENT
LIKE THIS.
THE THIRD AND ALSO IT APPLIES TO
DATA SCIENCE BUT IT APPLIES TO
ALL OF OUR RESEARCH.
AND MANY OTHER TRAGEDIES THAT
HAVE HAPPENED EARN THE COUNTRY
AND THE WORLD, CHOW WE PREVENT
THEM FROM HAPPENING?
NOT AT THE LEVEL OF SECURITY
SURVEILLANCE BUT WAY BEFORE IT.
HOW CAN YOU LOOK TO THE SOCIETY
AND WHAT VALUES MAY ELIMINATE
THE IDEA OF HATE OR HARMING
NORTH HUMAN BEING?
MAYBE WE CAN USE SOME PRINCIPLE
COMPONENT ANALYSIS ON THE
SOCIETAL OR GLOBAL SCALE TO
IDENTIFY A COLLECTION OF FACTORS
THAT WE NEED TO CORRECT IN ORDER
TO LIVE HAPPILY EVER AFTER.
THAT'S ALL FROM ME.
THANK YOU VERY MUCH.
>>AND ONE IS LOOKING AT WHAT IS
DRIVING THE HEALTH DISPARITIES.
THAT'S THE ONLY WAY WE CAN
ADDRESS THEM AND WE HAVE THE
RIGHT POLICY PROGRAM AND
LEGISLATION TO ADDRESS THEM.
AND I LIVE IN SEATTLE VERY RICH
COUNTY, MICROSOFT, BOEING,
AMAZON, STARBUCKS, COSTCO, YOU
NAME IT.
AND WHEN YOU LOOK AT KING COUNTY
AS A COUNTY THE LIFE EXPECTANCY
IS WAY ABOVE THE AVERAGE OF
OTHERS IN THE UNITED STATES NOT
THE TOP BUT HIGH AND I HAVE A
PROBLEM AND I KNOW WHAT IT IS
AND I WANT YOU TO LOOK DEEPER
WITHIN THE COUNTY.
WE LOOKED AT THE CENSUS TRACK.
18 YEARS OF LIFE EXPECTANCY
DIFFERENCE WITHIN THE CITY OF
KINGS COUNTY, DIABETES HIGHER.
THAT LED TO POLICY SPECIFIC TO
THAT COMMUNITY.
AND THE COMMUNITY AND CITY PAYS
FOR IT IN ORDER FOR THEM AND ONE
CONDITION WE PUT FRUITS AND
VEGETABLES IN THIS AND THAT'S AN
EXAMPLE WHERE YOU HAVE TO
UNDERSTAND THE DATA AND WHAT'S
DRIVING THE BAD PERFORMANCE AND
ADDRESS IT IN SOMETHING THAT
WILL HELP THE COMMUNITY AND THE
COMMUNITY CAN SEE.
AND THE THIRD ONE WE IN THE
COUNTRY WE LEARNED A HARD LESSON
DURING THE COVID-19 THAT MANY
COUNTIES WERE NOT ABLE TO
ANALYZE THE DATA THEY GOT FROM
COVID-19.
DIDN'T HAVE THE MAN POWER OR
EPIDEMIOLOGISTS OR PROGRAM.
WE NEED TO TRAIN A NEW
GENERATION OF PROFESSIONALS THAT
CAN INFORM PUBLIC HEALTH AND
DECISION MAKING AND WE NEED TO
MAKE SURE THAT WE DON'T KEEP
TRAINING THE SAME PEOPLE.
YOU HAVE TO TRAIN PEOPLE FROM
THE COMMUNITY.
RIGHT NOW AT THE UNIVERSITY OF
WASHINGTON WE'RE LOOKING INTO
PROJECTS WHERE WE BRING PEOPLE
FROM COMMUNITIES TO DO RESEARCH
AND GET A CERTIFICATE OF
TRAINING AND PAYMENT FROM US IN
ORDER TO PAY FOR THE EDUCATION.
HOPING AND CONDITIONING,
HOPEFULLY, THEY GO BACK TO THE
COMMUNITY AND WORK IN THEIR
COMMUNITY.
WE NEED TO THINK OF SUCH A
PROGRAM.
I THINK ON A SCHOLARSHIP IF I
GET MY EDUCATION, I GO BACK AND
WORK AND I WAS TOLD YOU DON'T
NEED TO COME BUT YOU HAVE TO
EDUCATE SOMEBODY ELSE TO KEEP IT
GOING.
WE NEED TO TAKE A SYSTEM WE CAN
TRAINING SOMEBODY IF THEY HAVE
FROM COMMUNITIES WHERE WE NEED
TO HAVE PEOPLE WORK ON DATA AND
POLICY AND MAKE SURE WE GIVE
THEM THE -- WE HAVE TO PAY THEM
EQUALLY IN ORDER FOR THEM TO
MAKE IT TO GO TO THE COMMUNITY
AND THIS HAS TO BE ADDRESSED TO
MAKE A CHANGE IN THE FUTURE.
>>THANK YOU BOTH.
DEFINITELY AND WE NEED A NEW
GENERATION OF RESEARCHERS AND
THE PUBLIC.
I THINK I HEAR BOTH OF YOU,
WHICH I AGREE, TALKING ABOUT
DATA SCIENCE BEING TRANS
DISCIPLINARY AND INTEGRATING
WITH COMMUNITY ENGAGED RESEARCH,
PROMOTING DATA AS A PUBLIC GOOD
AND MAKE SURE WE'RE DOING
BENEFITS AND LEVELLING THE
PLAYING FIELD FOR COMMUNITIES
AND SOCIALLY DISADVANTAGED.
I'M SOUNDING OPTIMISTIC.
WE HAVE TO PRIORITIZE RESEARCH
QUESTIONS FROM THE COMMUNITY IN
THE DATA SCIENCE SPACE.
AND A LOT OF THE TIME WHAT WE
WANT TO DO IS INCLUDE
COMMUNITY-ENGAGED RESEARCHERS
AND STAKEHOLDER PARTICIPANTS AS
EXPERTS IN THE PROCESS.
IN THE PROCESS OF OUR DATA
ALGORITHMS BEING MODELS AND
COLLECTING THEIR APPROPRIATE
DATA AND ANSWERING THE DESIRED
QUESTIONS.
AND I THINK ALI, YOU BROUGHT IT
UP, THOSE INHERENT VARIATIONS
THAT EXIST IN SOCIAL
DETERMINATES AND THE MULTIPLE
DETERMINATES THAT SHAPE HEALTH
OF DIFFERENT POPULATIONS AND
SUBPOPULATIONS.
MAKING SURE DATA SCIENCE IS ABLE
TO HELP AND IDENTIFY THE
POTENTIAL AND BEST CHANCES OF
UNCOVER THE RELATIONSHIPS
BETWEEN PREDICTORS AND RESPONSE
AND HELPING REALLY ADVICE ON
WHAT'S GOOD HEALTH AND
WELL-BEING.
I'M CERTAINLY PLEASED WITH YOUR
RESPONSES AND I THINK WE NEED TO
PROMOTE COMMUNITY-ENHANCED AND
COMMUNITY-ENGAGED RESEARCH.
THANK YOU FOR THIS.
HOW AS DATA SCIENTISTS AND ON A
DATA SCIENCE BASE THINKING ABOUT
AND WE ALL AGREE SCIENTIFIC
INSIGHTS AND EVIDENCE NEED TO BE
ADVANCED AND ENHANCED BECAUSE
OUR EVIDENCE IS POORLY USED AND
LOOKING AT THE DOMAINS OF DATA
MAKING SURE THAT WE'RE
INTERPRETING DATA OR LOOKING AT
WHAT SCIENTIFIC EVIDENCE IN
DISCERNING HOW THE DATA THAT'S
GATHERED FROM THE DIVERSE
RESEARCH COMMUNITY-BASED
RESEARCH AND IT'S USED TO INFORM
THE SCIENCE AND ESPECIALLY
ALLOCATION OF RESOURCES FOR
HEALTH.
LOOKING AT HOW WE CAN REALLY
ALIGN ON DATA SHARING METHODS
AND OWNERSHIP.
IT'S ALL ABOUT RESPONSIBLE DATA
SCIENCE.
IT'S ALL ABOUT REALLY MAKING
SURE THAT WE'RE WORKING WITH THE
COMMUNITIES AND COMMUNITY-BASED
RESEARCHERS ON BUILDING THE
RIGHT DATA ARCHITECTURE AND
DEVELOPING STANDARDS.
WE TALKED ABOUT POLICY AS WELL
THAT GOVERNS THE COLLECTION AND
MANAGEMENT AND IMPLEMENTATION AS
WELL.
AND HOW WE ESTABLISH ETHICAL
STANDARDS TO GOVERN OUR SHARING
OF THE DATA AND DATA-DRIVEN
TECHNOLOGIES TO IMPROVE HEALTH
OUTCOMES FOR EVERYONE AND
BUILDING TRUST I THINK IS REALLY
A HUGE CHALLENGE AND THE KEY TO
ADVANCING THE SCIENCE AROUND
COMMUNITY-ENGAGED DATA SCIENCE
RESEARCH IS WHAT I'LL CALL IT
BECAUSE I THINK THE RESEARCH
THAT IS CONDUCTED TODAY THE
INSIGHT AND WHAT WE DO TODAY
WILL BE CRITICALLY IMPORTANT.
IN THE YEAR 2024, 2025, THE
WORLD IS GOING TO BE BUILDING ON
OR SOCIETY'S GOING TO BE
BUILDING ON THE BASIC KNOWLEDGE
OR THE IDEAS OR INNOVATION AND
IDEAS WE'RE IMPLEMENTING NOW AND
THE DISCOVERIES WE HAVE TO DATE.
THANK YOU BOTH FOR A WONDERFUL
DISCUSSION.
AND I THINK I'LL HAND IT OVER TO
A -- EMIR SINCE WE HAVE
QUESTIONS FROM THE AUDIENCE.
>>THANK YOU SO MUCH, IRENE.
YOU FACILITATED SUCH AN
EXCELLENT SESSION AND RAISED SO
MANY IMPORTANT TOPICS.
MY QUICK ROLE HERE IS TO TRY TO
ASSESS WHAT THE AUDIENCE WAS
ASKING.
WE HAVE A FEW QUESTIONS IN THE
Q&A BOX AND I WILL START BY THE
QUESTION FROM DR. CLAUDIA
PARVONTA.
SHE ADDRESSED THE QUESTION TO
DR. MOKDAD BUT ALL THE PANELISTS
CAN ANSWER.
THE QUESTION IS DO YOU HAVE ANY
SUGGESTIONS FOR CREATING TIME
LINES WITH DONOR AGENCY TO
EMPOWER COMMUNITIES TO ANALYZE
AND VISUALIZE DATA IN WAYS THAT
ARE EASIER FOR THE COMMUNITIES?
IT TAKES TIME AND WE ALWAYS SEEM
TO BE IN A CRISIS.
WHAT ARE YOUR THOUGHTS?
>>I HOPE YOU'RE DOING WELL AND
FULL DISCLOSURE, YES, I AGREE.
MANY DONORS INCLUDING THE BILL
AND MELINDA GATES FOUNDATION ONE
CRITERIA IS TO COLLECT THE DATA
AND RELEASE IT AND MAKE IT
AVAILABLE AND I WISH THAT WAS
PUBLISHED AND MAKE IT AVAILABLE
TO BENEFIT THE COMMUNITY AND FOR
SOME THEFT GRANTS IS TO MAKE IT
IN A WAY THE VISUALIZATION AND
WHERE THEY CAN GET WHAT HE OR
SHE NEEDS FROM THE DATA TO BE
USED FOR POLICY.
I WOULD SUPPORT -- THIS IS A
GREAT IDEA AND GREAT QUESTION.
I WISH THE DONOR WOULD PUT THAT
AS A CONDITION AND MAKE IT
VISUAL SO THE COMMUNITY CAN USE
IT AND BENEFIT FROM IT EVEN
WITHOUT KNOWING ANYTHING BEFORE
DATA COLLECTION AND STATISTICS.
>>THANK YOU.
THERE WAS A COMMENT THAT NHLBI
AND NIH ARE INVOLVED IN THIS
TOPIC.
AND YOU'RE WELCOME TO CONTACT
OUR PROGRAM STAFF AND WE'LL BE
HAPPY TO DISCUSS THIS TOPIC.
WE ALSO HAVE A COMMENT FROM
DR. SCHEFFLER WHO MENTIONED HE
AGREES WITH DR. MOKDAD ABOUT THE
DIVERSE PERSPECTIVE AND
PRIORITIES YOU COMMENTED ABOUT.
HE SAID HE THINKS THE EXPERTISE
CAN BE OFFERED TO THE COMMUNITY
BUT THE COMMUNITY MAY HAVE A
HIGHER PRIORITY THEY WANT TO
FOCUS ON SO IT CAN BE DIFFICULT
TO DEVELOP A JOINT FOCUS ON ONE
AREA.
I WELCOME YOU TWO TO ADDRESS THE
QUESTION I AGREE, COMMUNITY I
WAS WORKING AND THE WORK WAS
DONE ON THE PROBLEM AND THEN WE
WENT BACK AND STARTED TALKING
ABOUT THE HEALTH AND WHAT WE
NEED TO DO IN TERMS OF THE FEED.
YOU HAVE TO SOMETIMES TO ADDRESS
THE COMMUNITY NEEDS WITHIN YOUR
CAPACITY OF COURSE AND COMMUNITY
AND IF THAT'S THE ONLY WAY TO
GET HELP FOR THE COMMUNITY IT'S
NOT SOMETHING IN YOUR HANDS.
>>IRENE OR OLGA, DO YOU HAVE
ANYTHING TO ADD?
>>THE QUESTION IS HOW DO YOU
COMPROMISE BECAUSE YOU MAY NOT
AGREE.
THAT'S WHY I ANSWERED.
YES, SOMETIMES BUT I CALLED THE
EMBASSY AND SO SOMETHING WE
COULD DO BUT IF WE DIDN'T HAVE
ONE AT THAT TIME THE COMMUNITY
WOULD HAVE LISTENED TO ME ABOUT
FEEDING THE CHILDREN AND WAS
STILL ABLE TO DO IT AND IT WAS
INITIATED BUT THAT'S WHY WE GO
TO A COMMUNITY AND THAT CAN
HAPPEN.
THE FUNDING YOU HAVE IS TO DO IS
ABOUT SMOKING OR SOMETHING ELSE,
MATERNAL MORTALITY.
>>IT'S TRUE.
IT HAPPENS.
YOU MAY BE GIVEN FUNDING FOR
PARTICULAR WORK IN A COMMUNITY
AND THE THEY'RE NOT INTERESTED
AND HAVE PRIORITIES.
THIS IS WHERE AS A
COMMUNITY-ENGAGED RESEARCHER OR
DATA SCIENCE WORKING IN THE
COMMUNITY THIS IS ABOUT
ESTABLISHING A LONG-STANDING
RELATIONSHIP WITH THE COMMUNITY.
WE'RE NOT JUST GOING IN THERE
FOR ONE PARTICULAR INTERVENTION.
I THINK WHERE THERE'S DISCUSSION
AND COMPROMISE IN THE PLANNING
PROCESS THAT INCLUDES THEY'RE
PRIORITIES BUT ALSO AWARE THIS
MAY ALSO BEING SOMETHING TO
THINK ABOUT.
I THINK THAT'S THE WAY TO
APPROACH THIS.
>>I WANT TO -- SOMETIMES I LOVE
THE QUESTION BUT THE REVERSE
HAPPENS SOMETIMES.
I'LL GIVE AN EXAMPLE.
I WAS INVOLVED IN THE STUDY AT
CDC WHERE WE ADDED
CARDIOVASCULAR SCREENING TO
BREAST AND CERVICAL CANCER AND
I'M MEETING AND EXPLAINING NOW
WE'RE GOING ADD THE SCREENING
AND THIS WILL HELP YOU FIND
BLOOD PRESSURE, THIS IS A HEART
ATTACK AND THERE'S A LADY
SITTING IN THE BACK WAS GIVING
ME THIS LOOK AND AT THE END OF
WHEN I SPOKE AND ASKED QUESTIONS
SHE RAISED HER HAND AND OF
COURSE THE WAY SHE WAS LOOKING
AT ME SHE STOOD UP AND SAID
WHERE WERE YOU YEARS AGO?
MY HUSBAND DIED.
>>WELL SAID, ALI.
WE NEED TO MOVE ON AND GIVE ROOM
FOR ANOTHER CISION.
I SEE DR. MENSAH WANTS TO MAKE
REMARKS QUICKLY AND FOR
EVERYBODY, WE HAVE AN
INTERESTING DISCUSSION GOING ON
IN Q&A BUT THIS IS ALL RECORDED
AND WE'LL CERTAINLY TAKE THAT
AND IT WILL BE REFLECTED IN OUR
REPORT COMING FROM THE WORKSHOP.
DR. MENSAH, PLEASE.
>>THANK YOU.
BECAUSE WE RAN OUT OF TIME, I
THINK I WILL NOT ASK MY QUESTION
BUT I HAVE TO SAY THAT THIS HAS
BEEN AN ABSOLUTE FANTASTIC
SESSION.
I THINK WE'RE ALL SADDENED AT
UVA AND WHY PHIL NOT HERE BUT IF
HE WAS HE WOULD BE EXTREMELY
PROUD OF YOU.
THIS IS GREAT.
THANK YOU VERY MUCH.
ON THE LAST ISSUE THERE'S
SOMETHING IMPORTANT I SHOULD
MENTION FOR THE BENEFIT OF
PARTICULARLY THOSE WHO MAY BE
INTERESTED IN SENDING RESEARCH
APPLICATIONS AND GRANTS TO
NHLBI.
WE THINK THERE ARE MULTIPLE
OPPORTUNITIES WHERE
INVESTIGATORS HAVE IMPORTANT
IDEAS THAT THEY WANT TO TEST,
DON'T COME TO US FOR COMMUNITY
ENGAGED RESEARCH FOR THAT.
THE RO1s FOR COMMUNITY ENGAGED
RESEARCH WHERE WE REALLY NEED
YOUR HELP FOR US TO FIND WAYS
WHERE LEADERSHIP AND NIH AND
NHLBI IS NECESSARY WE MUST
ALWAYS BEGIN WITH THE COMMUNITY
NEEDS ASSESSMENT AND BUILD YOUR
RESEARCH HYPOTHESES AND
PRIORITIES ON WHAT THE
COMMUNITIES THAT INFORM YOUR
RESEARCH DESIGN.
SO HOPEFULLY IT YOU HAVE THE
OPPORTUNITY TO ADD ADDITIONAL
THOUGHTS TO THE QUESTIONS THERE,
HELP US IDENTIFY THE BEST WAYS
FOR US TO FREELY FOCUS ON THIS
BUT THIS HAS BEEN FANTASTIC.
THANK YOU VERY MUCH.
GREAT SEEING YOU ALL.
>>THANK YOU.
HEARTFELT THANKS TO IRENE AND
OLGA.
IT'S A WONDERFUL DISCUSSION.
I'LL LET MALIHA CLOSE THE
SESSION.
>>THANK YOU ALL FOR A WONDERFUL
DISCUSSION.
WE'LL GO ON A BIT OF A BREAK.
IT'S NOT A FULL 15 MINUTES BUT
THAT IS FINE.
WE REQUEST EVERYBODY RETURN BY
2:45 AS WE'LL GO INTO OUR LAST
SESSION AND THEN WE'LL START
CLOSING DOWN THE PROGRAM BEFORE
WE END AROUND 4:00.
OUR LAST SESSION FOR THE DAY IS
ADVANCING INCLUSIVE EXCELLENCE
IN COMMUNITY-ENGAGED RESEARCH.
AS ALL OF OUR PANELISTS HAVE
BEEN AMAZING AND SESSION HAS
BEEN GREAT, THIS WILL BE A GREAT
ONE.
LAST BUT NOT LEAST, PLEASE JOIN
US FOR SESSION 6 AND AGAIN,
THANK YOU EMIR AND ALL THE
PANELISTS FOR SESSION 5.
IT WAS FABULOUS.
WELCOME, EVERYONE AND THANK YOU
TO ALL OUR ATTENDEES WHO HAVE
BEEN STICKING WITH US FOR THE
WHOLE DAY AND ESPECIALLY WAITED
FOR THIS ONE SESSION WHICH IS
PROBABLY ONE OF THE MOST
IMPORTANT PANEL SESSIONS WE HAVE
BUT BECAUSE OF THE TIME WE HAVE
AND LATER ON IN THE AFTERNOON
BUT WE APPRECIATE EVERYONE WHO'S
HERE.
THIS IS GOING TO BE FOCUSSED ON
ADVANCING INCLUSIVE EXCELLENCE
IN COMMUNITY-ENGAGED RESEARCH
AND FOR THIS SESSION I'D LIKE TO
INVITE MY COLLEAGUE, DR. DESIREE
SALAZAR AS THE MODERATOR AND
EQUITY, INCLUSION COORDINATOR
FOR EXTRAMURAL PROGRAMS AT THE
NATIONAL HEART, LUNG AND BLOOD
INSTITUTE.
DESIREE, THE FLOOR IS YOURS.
>>WELCOME AND THANK YOU FOR
JOINING AND STICK AROUND WE'LL
HAVE CLOSING REMARKS AFTER THE
SESSION ENDS.
I'D LIKE TO INTRODUCE OUR CHAIR
OF THE CENTER OF THE SESSION,
DR. MONICA WEBB-HOOPER THE
DEPUTY DIRECTOR OF THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES AND OUR PANEL
EFFORTS, DR. HAROLYN BELCHER THE
CHIEF DIVERSITY OFFICER AS WELL
AS DIRECTOR OF THE OFFICE FOR
HEALTH EQUITY, INCLUSION,
DIVERSITY AND SENIOR DIRECTOR OF
THE CENTER FOR DIVERSITY IN
MENTAL HEALTH LEADERSHIP
TRAINING AT THE KENNEDY-KRIEGER
INSTITUTE.
DR. MARIE PLAISIME A MEDICAL
SOCIOLOGIST AND HUMAN RIGHTS
FELLOW AS WELL AS NSF POST DOCK
TORL FELLOW AT HARVARD
UNIVERSITY AND DR. CORBIE FROM
THE UNIVERSITY OF NORTH CAROLINA
SCHOOL OF MEDICINE DIRECTOR AND
PROFESSOR OF INTERNAL MEDICINE.
DR. MONICA WEBB-HOOPER WILL GET
US STARTED AND I'LL COME ON IN
THE LAST 10 TO 15 MINUTES TO
TAKE QUESTIONS FROM THE
AUDIENCE.
I'M VERY MUCH LOOKING FORWARD TO
THE SESSION.
>>THANK YOU, GOOD DAY,
EVERYONE.
I'M DELIGHTED AND HONORED TO BE
WITH YOU AND HAVE THE
OPPORTUNITY TO CHAIR THE
IMPORTANT DISCUSSION AND SESSION
AND HAVE AN ESTEEMED GROUP OF
PANELISTS.
I'M DELIGHTED.
THE TITLE OF THIS SESSION IS
ADVANCING INCLUSIVE EXCELLENCE
IN COMMUNITY-ENGAGED RESEARCH
AND INCLUSIVE EXCELLENCE IS A
PHILOSOPHICAL APPROACH TO HIGHER
EDUCATION ADMINISTRATION AND
PROCESSES THAT MEANS YOU ATTEND
BOTH TO THE DEMOGRAPHIC
DIVERSITY OF FACULTY, STUDENTS,
RESEARCH TEAM WHICH INCLUDES
MEANINGFUL PARTNERSHIPS AND THEN
THE NEED TO DEVELOP CLIMATES AND
CULTURES WITHIN INSTITUTIONS SO
THAT ALL WILL HAVE A CHANCE TO
SUCCESS AND DURING THIS PANEL
WE'RE TALKING ABOUT INCLUSIVE
EXCELLENCE IN THE CONTEXT OF
COMMUNITY-ENGAGED RESEARCH AND I
THINK ONE OF THE WAYS WE ADVANCE
UNCLUSIVE EXCELLENCE IS WITH
CULTURES THAT SUSTAIN SCIENTIFIC
ENVIRONMENTS THAT CULTIVATE AND
BENEFIT FROM THE FULL RANGE OF
TALENT AND NIH AIMS TO BUILD A
SELF-REINFORCING COMMUNITY OF
SCIENTISTS, INCREASING CAPACITY
THREW SHAPING CRITICAL MASS OF
EARLY CAREER SCIENTIST WHO'S ARE
COMMITTED TO INCLUSIVE
EXCELLENCE AND THE RESEARCH AND
IN COMMUNITY-ENGAGED HEALTH
DISPARITIES SCIENCE.
AND SO IN THIS CONVERSATION
WE'LL TALK ABOUT THIS MORE AND
HOW TO FACILITATE INCLUSIVE
EXCELLENCE TO TRAIN
INVESTIGATORS IN THE
COMMUNITY-ENGAGED RESEARCH SPACE
IN NON-EXPLOITATIVE WAYS AND
IMPACT SCIENTIFIC DISCOVERY.
FIRST WE'LL TURN IT TO
DR. PLAISIME TO SHARE HIGHLIGHTS
FROM HER JOURNEY AS A YOUNG
SCIENTIST ENTERING THE SPACE OF
HEALTH EQUITY-RELATED RESEARCH.
>>THANK YOU, DR. HOOPER.
IT'S GREAT TO BE WITH YOU THIS
AFTERNOON.
I WANTED TO START OFF OUR
SESSION BY HIGHLIGHTING MY OWN I
GUESS EARLY CAREER PATH AND HOW
I GOT TO WHERE I AM TODAY.
SO ORIGINALLY GOT MY BACHELOR'S
FROM THE UNIVERSITY OF
RODCHESTER IN PUBLIC HEALTH.
I WAS INITIALLY PRE-MED AND
REALLY INTERESTED IN HELPING
PATIENTS BUT FELL IN LOVE WITH
PUBLIC HEALTH AND AFTER I TOOK A
PUBLIC HEALTH 101 COURSE I GOT A
MASTER'S IN PUBLIC HEALTH FROM
DREXEL UNIVERSITY IN
PHILADELPHIA.
AFTER I GRADUATED I WASN'T SURE
WHAT I WANTED TO DO BUT STARTED
WORKING AT A CANCER INSTITUTE
AND REALIZED I WANTED TO BE PART
OF THE RESEARCH TEAM AND HOW
RACE AND RACISM IMPACTS HEALTH
DECIDED TO PURSUE A Ph.D. IN
MEDICAL SOCIOLOGY AT HOWARD
UNIVERSITY IN D.C. AND FROM
THERE I REALLY TOOK ADVANTAGE OF
ALL THE OPPORTUNITIES AVAILABLE
AT HOWARD AND IN D.C. AND I WAS
ABLE TO CONNECT WITH GREAT
MENTORS AND ABLE TO APPLY TO
DIFFERENT PROGRAMS AND
EVENTUALLY STARTED A POSTDOC AT
HARVARD WHERE I'M EXAMINING HOW
RACE AND RACISM IMPACT THE
CLINICAL PROVIDER RELATIONSHIP
AND HOW IT PRODUCES HEALTH
DISPARITIES.
>>THANK YOU FOR SHARING THAT.
IT'S GREAT TO HEAR A LITTLE BIT
ABOUT YOUR JOURNEY AND HOPEFULLY
AS WE GET THROUGH THIS
CONVERSATION YOU'LL BE ABLE TO
INFUSE MORE AND IT'S AN
IMPORTANT JOURNEY OTHERS CAN
BENEFIT FROM.
MOST WHATEVER WE'LL FOCUS ON IS
EARLY CAREER SCIENTISTS AND HOW
WE CAN ADVANCE THEIR CAREERS IN
THIS SPACE.
BEFORE WE DELVE INTO THAT, I'D
LIKE TO START WITH THOUGHTS AND
ADVICE THE PANELISTS HAVE FOR
ESTABLISHED INVESTIGATORS OR
MID-CAREER INVESTIGATORS SEEKING
TO APPLY COMMUNITY-ENGAGED
RESEARCH METHODS IN THEIR WORK
WHO MAY BE NEWER TO THIS
APPROACH AND THOSE WHO WORK IN
CLINICAL SCIENCE AND ACCOUNT
GENETICS AND GENOMICS AND THEY
MAY HAVE TRAINEES IN THEIR LABS
OR MENTORING EARLY CAREER
SCIENTISTS.
SO I'D LIKE TO HEAR YOUR
THOUGHTS ABOUT STARTING THERE
AND THEN WE'LL MOVE INTO MORE OF
THE WHAT'S HAPPENING IN THE
EARLY CAREER SPACE BUT THERE ARE
PEOPLE WHO ARE TRAINING EARLY
CAREER SCIENTISTS AND WE WANT TO
MAKE SURE THAT WE HEAR FROM YOU
ABOUT YOUR THOUGHTS OND -- ON
HOW THEY CAN DO THAT.
LET'S START WITH DR. CORBIE.
>>FIRST, LET ME SAY HOW HONORED
I AM TO BE AMONG THE PANELISTS
FOR THE WORKSHOP.
IT'S BEEN A REMARKABLE TWO DAYS
AND SO THANK YOU TO THE
ORGANIZERS AS WELL AS TO WHOEVER
SUGGESTED I BE ON THIS PANEL.
SO FOR MID CAREER, THERE'S TWO
PARTS TO THE QUESTION, MONICA,
THE FIRST IS WHAT DO THOSE THAT
ARE TRAINING OUR MOST PRECIOUS
RESOURCE OUR EARLY CAREER
INVESTIGATORS NEED TO THINK
ABOUT AS THEY TRAIN THEM AND
ALSO AS THEY'RE LOOKING TO
ADVANCE EQUITY WITHIN THEIR WORK
THE LAST FEW YEARS OF THIS
PANDEMIC HAS HIGHLIGHTED WE ALL
NEED TO BE IN THIS FIGHT TO
ADVANCE EQUITY AND AS FOLKS ARE
STARTING TO TURN TOWARDS THAT
AND THINK ABOUT THEIR OWN WORK,
HOW CAN THEY REPOSITION
THEMSELVES TO DO WORK THAT
ADVANCES EQUITY.
I'LL START WITH THE FIRST ONE OF
THE THINGS I HAVE TALKED ABOUT
IN TERMS OF MENTORSHIP IS THAT
THERE'S JUST NOT ENOUGH SCHOLARS
OF COLOR TO GO AROUND AND FOR
THOSE OF US WHO DO HEALTH EQUITY
WORK WE TEND TO BE OVER
REPRESENTED AMONGST PEOPLE OF
COLOR.
PRIMARILY OFTEN BECAUSE FOLKS
HAVE HAD A LIVED EXPERIENCE TO
DO THIS WORK AND OFTEN
PURPOSE-DRIVEN WORK.
IT'S NOT SOLELY FOR THE BENEFITS
OF SCIENTIFIC DISCOVERY.
THE RECOGNITION THAT PASSION IS
NOT -- TYPICALLY THROWN OUT AS
ALMOST A DEROGATORY WORD AND
USING OUR EXPERTISE TO ADVANCE
HEALTH SO EVERYBODY HAS AN
OPPORTUNITY TO BE HEALTHY.
THAT CAN HAPPEN AND ONE OF THE
PANELS EARLIER TODAY OR
YESTERDAY THERE WAS A QUESTION
ABOUT WHETHER EVERYBODY SHOULD
BE DOING COMMUNITY ENGAGED WORK.
TO ME, WE NO LONGER HAVE THE
LUXURY OF JUST NAVAL GAZING AS A
SCIENTIFIC COMMUNITY.
WE NEED TO ENSURE OR WORK,
REGARDLESS OF WHETHER WE'RE
DOING BASIC SCIENCE RESEARCH OR
WHETHER WE'RE DOING PHASE FOUR
TRANSLATIONAL RESEARCH, WE NEED
TO BE THINKING ABOUT THE
HANDOFF.
THE END USER PICKING UP THIS
RESEARCH AND THEN USING IT FOR
THE NEXT SET OF SCIENTIFIC
DISCOVERIES.
FOR OUR BASIC SCIENTIST, THAT
MAY BE CLINICAL INVESTIGATORS.
THAT MAY BE -- WE NEED TO THINK
ABOUT WHO IT'S BEING HANDED OFF
TO AND AS WE THINK ABOUT
STAKEHOLDER ENGAGEMENT OR
COMMUNITY ENGAGEMENT OR
TRANSLATIONAL RESEARCH TO ME
THAT'S ONE OF THE THINGS MID
CAREER SCIENTISTS NEED TO BE
THINKING ABOUT.
THE OTHER THING IS THAT THERE'S
THIS FRAGILE PERIOD WHEN PEOPLE
GET THEIR FIRST RO1.
I THINK WE NEED TO BE SHORING UP
AND SUPPORTING OUR EARLY-CAREER
INVESTIGATORS AS THEY MAKE THE
TRANSITION POINT.
FOR MID CAREER AND SENIOR
INVESTIGATORS, THEY NEED TO BE
THINKING ABOUT THAT.
WE HAVE ALL SEEN THE DATA AND
THE STUDIES THAT HAVE SHOWN THAT
SCIENTISTS OF COLOR OFTEN ARE
RESEARCHING TOPICS THAT ARE LESS
LIKELY TO BE FUNDED AND EVEN
WHEN THEY ARE LOOKING ACROSS THE
BOARD, THEY'RE LESS LIKELY TO BE
FUNDED IN TERMS OF THEIR FIRST
RO1.
THAT FRAGILE PERIOD NEEDS TO BE
EVEN MORE PROTECTED FOR
SCIENTISTS IN THAT AREA.
IN TERMS OF SUPPORTING OUR
MIDCAREER AND EARLY CAREER
INVESTIGATORS, I THINK WE ABOUT
WHAT I HEAR ABOUT FOR SCIENTISTS
OF COLOR I HEAR ABOUT
REMEDIATION.
WE NEED TO GIVE THEM THE SKILLS
THEY NEED TO SUCCEED AS IF IN MY
VIEW, WE HAVE ALREADY IDENTIFIED
THE CREAM OF THE CROP.
WE HAVE IDENTIFIED INDIVIDUALS
HAVE GRIT AND DETERMINATION AND
BEEN ABLE TO TRANSCEND THE MOST
CHALLENGING AND COMPROMISING
CIRCUMSTANCES TO SIT AT THE SAME
TABLE AS ANY OTHER SCIENTIST.
AND THAT GRIT AND DETERMINATION
NEEDS TO BE CELEBRATED.
THERE MAY BE GAPS IN ATTAINMENT
BECAUSE OF REAL WORK, REAL WORK,
WORKING DURING HIGH SCHOOL AND
COLLEGE THAT DIDN'T AFFORD THEM
THE KINDS OF OPPORTUNITIES OTHER
MAY HAVE HAD BUT THE GENIUS I
SEE TO TRANSCEND THOSE OBSTACLES
IS OFTEN NOT CELEBRATED.
PEOPLE NEED TO CHECK THEIR
ASSUMPTIONS WHY REMEDIATION MAY
BE NEEDED.
IT'S NOT AS IF FOLKS CAN'T LEARN
THE SKILL SET.
THEY'VE ALREADY DEMONSTRATED
THEY CAN BE SUCCESSFUL, THEY'RE
SITTING AT THE SAME TABLE HAVING
OVERCOME ALL KINDS OF OBSTACLES
AND CHALLENGES.
SO NOW WE NEED TO CELEBRATE AND
MAKE SURE THEY'RE TOOL KIT IS
FULL AND THEY HAVE THE SAME
OPPORTUNITY AS EVERYONE ELSE.
THIS NOT ONLY AN INDIVIDUAL
ISSUE BUT SYSTEMS ISSUE IN OUR
INSTITUTIONS.
I'LL PAUSE THERE BECAUSE THIS IS
A SOAPBOX I CAN STAND ON FOR A
LONG TIME BUT I'LL LET MY
COLLEAGUES JUMP IN.
>>YOU STAND ON IT VERY.
LOTS OF GEMS YOU DROPPED AND
IMPORTANT PHRASES I HOPE
EVERYONE IS CATCHING ON TO.
I KNOW IMPORTANT WORDS YOU
SHARED AND EXPERIENCE YOU HAVE.
WE KNOW YOU KNOW WHAT YOU'RE
SPEAKING ABOUT.
I'D LIKE TO HEAR FROM DR. BELCH
CHER AND YOUR THOUGHTS TO ADD TO
THE QUESTION ABOUT HOW WE
SUPPORT OR HOW WE ENCOURAGE
ESTABLISHED OR MIDCAREER
RESEARCHERS JUST GETTING INTO
THIS AND TRAINING OTHERS.
>>I THINK IT'S VITALLY
IMPORTANT TO CONTINUE LEARNING
THROUGHOUT OUR CAREER SO I'M
FORTUNATE BECAUSE I'M A
PEDIATRICIAN AND STILL SEE
PATIENTS SO IT'S REALLY THE
PATIENTS AND OUR YOUNG SCHOLARS
THAT ARE INSPIRATIONAL TO ME AND
ALLOWED ME TO MOVE TO THE OTHER
SPACES AND I TRY TO ENCOURAGE MY
COLLEAGUES TO COME WITH ME AND
FOR OVER A DECADE AS PART OF THE
MATERNAL AND CHILD HEALTH BUREAU
THEY PROMOTED DIVERSITY IN THE
MATERNAL AND CHILD HEALTH FIELD.
FOR ME, JUST SITTING AROUND AT
THE TABLE IS NOT ENOUGH.
I HAVE TO DO SOMETHING SO ABOUT
13 YEARS AGO WE CREATED A
CONFERENCE LINGUISTIC COMPETENCY
DESIGN FOR TRAINEES AT
KENNEDY-KRIEGER INSTITUTE SO
THEY CAN CONTINUE TO LEARN AND
HAD A LUNCH AND LEARN WITH
FACULTY SO THEY CAN BE IN A
PRIVATE SPACE AND GO FROM SAFE
PLACES TO BRAVE PLACES.
WHAT I WANT COLLEAGUES TO
UNDERSTAND IS THERE'S DISCOMFORT
AT THE LEARNING EDGE AND IF WE
STAY IN THE COMFORTABLE PLACE
WE'LL GET THE SAME RESULTS.
WE WON'T ELIMINATE HEALTH
DISPARITIES OR BE ABLE TO BRIDGE
WHAT WE SEE AND CORRECT IT SO WE
HAVE TO CONTINUE TO LISTEN,
CONTINUE TO LISTEN CAREFULLY TO
OUR PATIENTS AND THE YOUNG
PEOPLE WHO ARE OFTEN A LITTLE
AHEAD OF US IN OUR OLDER SELVES
TO BE ABLE TO INNOVATE.
I ALSO THINK WE CANNOT SAY IN
THE IVORY TOWER.
I'M A PROFESSOR OF PEDIATRICS AT
JOHNS HOPKINS AND AGAIN THE VICE
PRESIDENT OF KENNEDY-KRIEGER AND
WE CAN'T STAY IN AN IVORY TOWER
AND IN BALTIMORE CITY WE HAVE A
TASK FORCE FOR SOCIAL
DETERMINATES OF HEALTH WHERE
COMMUNITY AND FACULTY AND
RESEARCHERS CAN WORK TOGETHER TO
IDENTIFY WHAT WE SAY IS A SOCIAL
DETERMINATE AND THE POLITICAL
DETERMINATES OF HOW WE GOT
THERE.
WHAT DO WE NEED TO DO TO ADVANCE
THE HEALTH AND WELL-BEING OF THE
CITIZENS IN THE CITY WHERE WE
WORK.
DOING THAT KIND OF EQUAL
PARTNERSHIP, WORKING ON LOCAL
COMMUNITY HEALTH IMPROVEMENT
COALITIONS IS I THINK IS A GOOD
LEARNING SPACE FOR LATER CAREER
RESEARCHERS.
>>IF I CAN JUMP IN AND UNDER
SCORE SOMETHING MY COLLEAGUE
HAROLYN IS SAYING, THIS IDEA OF
LIFE LONG LEARNING AS A MENTOR
AND SENIOR SCIENTIST
PARTICULARLY WHEN IT COMES TO
MENTORING AND SUPPORTING AND
BEING A SPONSOR, NOT JUST A
MENTOR AND ALSO A SPONSOR FOR
FACULTY OF COLOR, I THINK IS
CRITICAL.
IT REQUIRES CONSTANT
RE-EXAMINATION FOR ALL OF US
FRANKLY BECAUSE WE'RE ALL ON
THIS JOURNEY AROUND EQUITY,
DIVERSITY AND INCLUSION AND
DEPENDS MORE FROM NON-BIPOC
FACULTY AND BE WILLING TO
EXAMINE IN THE BRAVE SPACE
HAROLYN TALKS ABOUT BEING
WILLING TO ONE, FEEL
UNCOMFORTABLE AND GET
UNCOMFORTABLE AND GO SO FAR AS
TO FEEL UNCOMFORTABLE AND
UNDERSTAND THE LIVED EXPERIENCE
OF YOUR MENTEE AND TO EXAMINE
YOUR OWN BIASES AND FAILINGS AND
GAPS THEY MAY HAVE IN TERMS OF
THEIR LIFE EXPERIENCE IN DEALING
WITH PEOPLE OF COLOR.
ONE THING CRITICALLY IMPORTANT
IN ACADEMICS WE GET THE SUPPORT
AND MENTORING IS VALUED AND WE
GET THE ACADEMIC REINFORCEMENT
AND ENCOURAGEMENT TO DO THAT.
EVEN IF YOU LOOK AT THE TRAINING
GRANTS ACROSS THE INSTITUTIONS
YOU'LL SEE MAYBE AN 8% IN DIRECT
BUT IT TAKES MORE TIME THAN THE
8%.
WHEN WE SAY WE VALUE MENTORING
AND T32s AND THING OF NATURE,
THE INFRASTRUCTURE SUPPORT
THAT'S BEEN REQUIRED OVER THE
LAST TWO DECADES I'VE BEEN DOING
THIS WORK THAT INCREASED.
THERE'S MORE CLEARANCE PROCESS
AND MORE REGISTRATION AND VER
FISSION AND THINGS OF THAT
NATURE WHICH ARE MAGIC TO PEOPLE
OUTSIDE BUT IT TAKES TIME AND
INVESTMENT AND FOR BIPOC FACULTY
AS YOU MENTIONED OFTEN TIMES
THIS IS DONE ON OFF HOURS ON THE
50, 60 HOURS A WEEK AND IT'S SO
IMPORTANT WE CANNOT AFFORD NOT
TO.
AND MENTOR YOUNG SCIENTISTS OF
COLOR AND SEEK US OUT FROM ALL
OVER CAMPUS, FRANKLY.
IT'S THREE OR FOUR E-MAILS A
WEEK TO PLEASE MEET ME OR TALK
TO ME AND WE HAVE TO SUPPORT
THOSE UP AND COMING SCIENTISTS
AND FILLING OUT THE TABLES.
WE HAVE HUNDREDS OF PEOPLE WE
NEED TO PUT IN THE TABLES EVEN
THINKING ABOUT THE SYSTEMS TO
SUPPORT MID CAREER AND SENIOR
FACULTY OF COLOR AS WELL.
AND THIS PANEL IS SUPPOSED TO BE
TALKING ABOUT EARLY CAREER.
>>BASED ON YOUR EXPERTISE AND
EXPERIENCES, I'D LIKE TO MOVE US
INTO SOME OF THE HOWS.
WE HEAR THE WORDS AND SOMETIMES
IT EVEN SEEMS LIKE BUZZ WORDS
BUT I THINK PEOPLE NEED A SENSE
ON HOW THIS HAPPENS AND SHARE
YOUR THOUGHTS ON THE APPROACHES
AND STRATEGIES SPECIFICALLY THAT
CAN BE IMPLEMENTED TO ENCOURAGE
AND EMPOWER EARLY CAREER
SCIENTISTS OR RESEARCHERS OF
DIFFERENT BACKGROUND REGARDLESS
OF THEIR STAGE TO ENGAGE IN
COMMUNITY-ENGAGED RESEARCH AND
FOCUS ON HEALTH DISPARITIES.
>>I REALIZED WHILE AT HOWARD
THERE'S ENDLESS OPPORTUNITIES AT
THE NIH.
AND THE NIH ITSELF IS CONFUSING
AND COMPLICATED.
I DECIDED TO JUST EXPLORE THE
WEBSITE AND FIGURE OUT IF
THERE'S OPPORTUNITIES FOR YOUNG
SCHOLARS LIKE MYSELF TO GET
INVOLVED AND GET AN IN DEPTH
PROGRAM AND A GOT INVOLVED IN
THE PROGRAM THAT MATCHES
SCHOLARS WITH AN INSTITUTE AND I
WAS FORTUNATE TO BE MATCHED WITH
DR. PARKER WHO TRANSFORMED MY
IDEA AND TOOK ME AROUND NHLBI
AND MET DR. MENSAH AND MET FOLKS
AT WORKSHOPS AND MEETINGS AND
THE HANDS-ON EXPERIENCE AND
TAKING THE RISK TO APPLY DO
DIFFERENT PROGRAMS CLEARED THE
PATHWAY OR VISION OF WHAT ARE
THE POSSIBILITIES AVAILABLE TO
EARLY CAREER INVESTIGATORS.
ONE OF MY TAKEAWAYS IS TO FIND
OUT THE OPPORTUNITIES AVAILABLE
AND FINDING A MENTOR INVESTED
AND WILLING TO TAKE YOU AROUND
AND SHAKE HANDS WITH FOLKS IN
DIFFERENT DEPARTMENTS.
DR. PARKER WAS REALLY
INFLUENTIAL IN THAT SPACE AND I
WAS ABLE TO CONNECT WITH
DIFFERENT PEOPLE AND LEARN ABOUT
THE DIFFERENT OPPORTUNITIES I
CAN APPLY FOR.
>>YOU MENTION THE HEALTH EQUITY
PROGRAM AND THAT'S ONE GREAT
EXAMPLE.
DR. BELCHER TALK ABOUT THE
SPECIFICS OF WHAT CAN BE
IMPLEMENTED TO ENCOURAGE EARLY
CAREER SCIENTISTS TO MOVE INTO
COMMUNITY-ENGAGED RESEARCH.
>>MY PATIENT POPULATION IS
PRIMARILY THOSE CHILDREN WHO ARE
OR AT RISK FOR DEVELOPMENT AL
DISABILITIES AND ALCOHOL USE
DURING PREGNANCY IS THE NUMBER
ONE CAUSE OF INTELLECTUAL
DISABILITY AND IT'S NOT AS
SIMPLE AS JUST SAY NO.
BEING PART OF THE COMMUNITY
DEVELOPING PROGRAMS THAT ARE
EMBEDDED IN THE COMMUNITY GOING
TO THE COMMUNITY AND WORKING
WITH THE FAMILIES LISTENING TO
THEIR STORIES AND TRYING TO
EXPAND SERVICES THAT ARE
AVAILABLE WHERE PEOPLE LIVE HAS
BEEN GREAT AND BRINGING
RESIDENTS AND SCHOLARS ALONG
WITH ME AND SEEING THE
DIFFERENCE THAT YOU CAN MAKE BY
BEING THERE WITH FAMILIES AND
PROVIDING SERVICES AND NOT FOR
INSTANCE WHEN I WAS PART OF THE
PROGRAM THAT I HAD DEVELOPED
WHEN I WAS AT UNIVERSITY OF
SOUTH FLORIDA WAS CALLED STRIFE,
SUPPORT, TREATMENT,
REHABILITATION, INDEPENDENT
VALUES AND EDUCATION BUT I WOULD
NOT HIRE A SOCIAL WORKER WHO
WASN'T WILLING TO GO TO THE
COMMUNITY AND I WENT TO THE
COMMUNITY AND DID HOME VISITS AS
WELL BECAUSE YOU DON'T KNOW
UNTIL YOU DO KNOW WHAT THE
CHALLENGES ARE I UNDERSTAND IT'S
A MULTI-DISCIPLINARY ENDEAVOR.
I WAS ABLE TO GET CDC FUNDING
FOR UNDERGRADUATES THROUGH
GRADUATE AND POST-DOCTORAL
STUDENTS THROUGH A FELLOWSHIP
AND RISE UP AND RESEARCH
INITIATIVES FOR STUDENT
ENHANCEMENT UNDERGRADUATE
PROGRAM AND THROUGH THE OFFICE
OF MINORITY HEALTH THROUGH THE
EMERGE EXCELLENCE IN MENTORING
UNDER REPRESENTED GROUP HEALTH
EQUITY FELLOWSHIP WE PLACE
FELLOWS FOR A 12 MONTH PERIOD AT
ANY OF THE HHS AGENCIES.
WE HAVE ONE AT NIH AND THREE AT
CDC AND ONE AT SAMHSA AND ONE AT
HRSA AND ONE AT LVA AND GIVING
YOUNG PEOPLE THE OPPORTUNITY TO
HAVE MENTORING.
MENTORING IS A CRITICAL PART OF
THE SERVICES.
NOT ONLY DO THEY DO THE RESEARCH
MENTORING BUT WE HAVE A MENTOR
COACH AND WE HAVE A FRAMEWORK
THAT WE WORK ON WHICH IS A
CULTURALLY CONGRUENT MENTORING
FRAMEWORK WHERE WE VALUE THE
INDIVIDUAL SCHOLARS' LIVED
EXPERIENCE.
JUST BECAUSE PEOPLE LOOK ALIKE
DOESN'T MEAN THEY HAVE THE SAME
LIVED EXPERIENCE.
WE HAVE TO RECOGNIZE THAT.
SO THEY WORK WITH HISTORICALLY
BLACK COLLEGES AND UNIVERSITIES
AND GRADUATE UNIVERSITIES.
I'VE NEVER GONE TOO FAR FROM
THAT BUT TRIBAL SERVING
INSTITUTIONS WORKING WITH FIRST
NATIONS AND WITHIN THE
COMMUNITIES.
I THINK HELPING YOUNG PEOPLE AND
HAVING MENTORS THAT LOOK LIKE
THEM AND CREATING NEAR PEER
MENTORSHIP PATHWAYS IS
CRITICALLY IMPORTANT.
>>ABSOLUTELY CRITICAL.
DR. CORBIE, COULD YOU DISCUSS
EXAMPLES OF PROGRAMS OR
INITIATIVES YOU'RE INVOLVED IN
OR AWARE OF THAT HAVE EFFECTIVE
ENCOURAGED EARLY CAREER
SCIENTISTS OR INVESTIGATORS FROM
DIVERSE BACKGROUNDS TO FOCUS ON
COMMUNITY-ENGAGED RESEARCH OR
CBPR AND IF YOU CAN ALSO TALK
ABOUT WHY AND HOW THOSE PROGRAMS
HAVE BEEN EFFECTIVE.
>>THANK YOU FOR THAT QUESTION.
WHAT I'LL SAY IS THAT THERE'S A
MYRIAD OF PROGRAMS TO BUILD
EARLY STAGE AND MID CAREER
INVESTIGATORS.
I THINK WE'RE SEEING AN
EXPANSION OF UNDERSTANDING HOW
THE SKILL SETS SUPPORT RESEARCH
THAT IS COMMUNITY ENGAGED.
SO COMMUNITY ENGAGEMENT IS NOT
NECESSARILY A METHODOLOGY OR
APPROACH OR WAY OF LOOKING AT
THE WORK WE STILL USE THE SAME
RIGOROUS KINDS OF RESEARCH
METHODOLOGIES THAN ANY OTHER
CLINICAL TRANSLATIONAL
POPULATION HEALTH OR HEALTH
RESEARCH.
IT'S THE RECOGNITION THAT
THOSE -- THE RECOGNITION WE NEED
TO CENTER THE VOICES OF THOSE
THAT ARE EITHER MOST IMPACTED OR
ARE THE END USERS OF THIS WORK.
SO THE HEALTH EQUITY -- HEALTH
DISPARITIES RESEARCH INSTITUTE
IS A GOOD ONE BECAUSE IT GIVES
THE FULL BREADTH OF POPULATION
HEALTH RESEARCH AND K24s, I WAS
A BENEFICIARY OF NHLBI OF K24
AND RENEWAL AND THAT WAS A
PHENOMENAL OPPORTUNITY FOR THE
AS A MENTOR TO CREATE THE
INFRASTRUCTURE FOR THE WORK.
THE INFRASTRUCTURE HAD TO DO
AROUND COMMUNITY-ENGAGED
RESEARCH BECAUSE THAT'S WHAT I
WAS DOING AT THE TIME AND
ENSURING WE HAD AN
INFRASTRUCTURE THOUGH WE HAD OUR
OWN STUDIES GOING ON BUT WE HAD
A PLATFORM FOR A JUNIOR AND
EARLY-STAGE INVESTIGATORS TO
COME ON BOARD TO BE ABLE TO DO
THE RESEARCH.
ONE OF THE THINGS THAT HAS BEEN
MENTIONED NUMEROUS TIMES OVER
THE LAST TWO DAYS IS THAT
APPRECIATION RESOURCE OF TIME TO
BE ABLE TO BUILD TRUSTING
AUTHENTIC PARTNERSHIPS AND
RELATIONSHIPS.
TYPICALLY A FELLOWSHIP IS TWO
YEARS, MAYBE THREE YEARS
DEPENDING ON THE TYPE OF FUNDING
THAT YOU HAVE.
AND IT'S NOT ENOUGH TIME TO
BUILD THE RELATIONSHIPS.
OUR SENIOR INVESTIGATORS, HAVING
THAT INFRASTRUCTURE OF AN
ONGOING PARTNERSHIP AND PROJECT
GRACE -- THE PARTNERSHIP I'VE
BEEN APART OF HAS BEEN GOING
ALMOST 20 YEARS NOW AND HAD
SENIOR FOLKS COME ON AND WE
FOCUSSED ON CARDIOVASCULAR
DISEASE AND HIV PREVENTION AND
CHRONIC DISEASE PREVENTION
THERE'S LOTS OF ROOM FOR
QUESTIONS TO BE ASKED AS WELL AS
EVEN WITH THE BROAD SWATH OF
WHAT WE FOCUSSED ON THERE'S ALL
KINDS OF THINGS THAT THAT ARE
INEQUALITIES NEED TO BE
ADDRESSED AND WE HAVE A MENTOR
AND A COMMUNITY COLLABORATOR
CO-MENTOR WITH OUR JUNIOR FOLKS
AND POSTDOCS ETCETERA.
WE USE DIVERSITY SUPPLEMENTS
FREQUENTLY TO OUR RO1s FUNDING
THE WORK OCCURRING IN THE
COLLABORATION AND SO WE HAVE HAD
DIVERSITY SUPPLEMENTS FOR
POSTDOCS TO JUNIOR FACULTY.
WE ARE WORKING ON ONE FOR HIGH
SCHOOL BECAUSE WE HAVE ONE OF
OUR RO1 IS SUPPORT YOUTH ASSET
MAPPING PROGRAM, MAPS CORE AND
TAKING THE DATA AND PUTTING THE
DATA INTO THE EMR.
IT'S AGAIN A TIERED MENTORING
PROGRAM.
THE NEAR-PEER MENTORING FOR HIGH
SCHOOL AND COLLEGE STUDENTS IN
THE PROGRAM.
THERE'S MANY OPPORTUNITIES AND
MANY ARE EXPANDING.
THEY'RE APERTURE TO INCLUDE
COMMUNITY-ENGAGED RESEARCH AND
THE WAY THE METHODOLOGIES CAN BE
AAPPLIED AND THE RESEARCH
INFRASTRUCTURE THAT DOESN'T
REQUIRE 18 YEARS LIKE I HAVE
BEEN ABLE TO BE A PART OF TO
BUILD.
SO THAT I WILL SAY ONE OF THE
BENEFITS OF LAYERING ON A STRONG
EXISTING COLLABORATION AND WHEN
SHE WOULD HAVE LEFT HARVARD OR
NORTH CAROLINA, THAT PARTNERSHIP
IS NOT SEVERED.
WE'RE ABLE TO KEEP THE
COLLABORATION GOING AND ONE
THING I WAS CONCERNED ABOUT IN
THE RESEARCH YOU KNOW HOW
ACADEMICS COME TO A PLACE FOR
TWO OR THREE YEARS AND MOVE TO
ANOTHER PLACE AT OUR FIRST REAL
JOB AND THE COLLABORATIONS YOU
BUILD DURING FELLOWSHIP WITH
COMMUNITIES CAN BE SIGNIFICANTLY
NEGATIVELY IMPACTED IF YOU'RE
MOVING AGAIN AWAY FROM THAT.
>>I THINK IN TERMS OF WHAT
HAPPENS TO THE RELATIONSHIPS AND
BECAUSE OF INSTITUTIONAL FACTORS
AND OTHER THINGS THAT LEAD TO
THAT AND THIS IS ALSO THE GROUP
MOST LIKELY TO FORM ESPECIALLY
WORKING WITH POPULATIONS THAT
EXPERIENCE HEALTH DISPARITIES
THOSE RELATIONSHIPS.
SO THAT CREATES A COMPLEXITY OF
DOING THAT.
CAN YOU TALK ABOUT THAT AT ALL?
>>YEAH, THAT'S EXACTLY WHY WE
CREATE THE INFRASTRUCTURE.
OUR PARTNERS EXPECT IN FACT OUR
COMMUNITY COLLABORATORS EXPECT
JUNIOR FOLKS TO COME IN AND COME
THROUGH OUR PARTNERSHIP KNOWING
WE'RE THE ANCHOR FOR THE
COLLABORATION.
KNOWING THAT I'M NOT GOING
ANYWHERE AND WE'RE HERE AND OUR
RO1s, OUR CENTER GRANTS ARE
THING THAT FORM THE FOUNDATION
AND THE DIVERSITY SUPPLEMENTS
UNDERSTAND THESE ARE JUNIOR
PEOPLE THEY'RE TRAINING AND
THEY'RE KOMEN -- CO-MENTORS IN
DIVERSITY SUPPLEMENTS AND K
AWARDS.
IT'S ELEVATING THAT EXPERTISE OF
THE COMMUNITY LEADER AND
COLLABORATOR TO ALSO BE A MENTOR
IN THIS WORK BECAUSE THEY HAVE
SUCH TREMENDOUS EXPERTISE TO
BRING.
>>I'LL START THE QUESTION WITH
DR. PLAISIME.
WE HEARD AND FROM DIFFERENT
COMMENTS THUS FAR ABOUT THE
IMPORTANCE OF TRUST AND
TRUSTWORTHINESS AND MEANINGFUL
ENGAGEMENT ALL INCLUSIVE OF
COMMUNITY-ENGAGED RESEARCH AND
HOW CAN WE BUILD CAPACITY OF OUR
EARLY STAGE INVESTIGATORS AND
RESEARCHERS FROM DIVERSE
BACKGROUNDS REGARDLESS OF THEIR
STAGE TO ESTABLISH THOSE
CONNECTIONS AND COLLABORATIONS
WITH COMMUNITY PARTNERS THAT ARE
BASED ON TRUST AND WE TALK ABOUT
THAT TAKES YEARS TO DEVELOP AND
I THOUGHT THE EXAMPLE
DR. BELCHER OFFERED ABOUT
BRINGING TRAINEES TO COMMUNITY
AND HOME VISITS BUT HOW DO WE
TRAIN EARLY STAGE INVESTIGATORS
HOW YOU EVEN START WITH BUILDING
THESE KINDS OF CONNECTIONS AND
GETTING COMMUNITY PARTNERS TO
TERRORIST YOU THAT YOU ARE THERE
FOR THE LONG HAUL AND NOT HELD
TO CAPTURE IN AND OUT AND HOW DO
WE GET THE PROCESS STARTED?
>>IN HAVING CONVERSATIONS WITH
OUR TEAM MEMBERS AND HONEST
CONVERSATIONS WITH OURSELVES AND
WE'VE HEARD CONVERSATIONS AROUND
STRUCTURAL RACISM AND DISSECTING
HOW THAT IMPACTS DIFFERENT
HEALTH OUTCOMES AND HAVING
HONEST CONVERSATIONS IS
IMPORTANT AND THERE'S A COMMON
GROUND WHEN THEY'RE PREPARING TO
DESIGN AN INTERVENTION OR
COMMUNITY ASSESSMENT AND ALSO
PART OF THAT TOO INCLUDES GREAT
MENTORSHIP AND I THINK THAT TOO
HAS BEEN INVOLVED THROUGHOUT THE
CONFERENCE IN ORDER TO GET TO
HAVING ONNE ENE ENEST -- HONES
CONVERSATIONS WITH YOURSELVES
AND MENTORS ON WHAT IS POSSIBLE
AND NOT POSSIBLE AND WHAT
CONNECTIONS AND OPPORTUNITIES
ARE THERE I CAN CONNECT WITH AND
HAVING YOUR OWN HOMEWORK IN
HAVING HONEST CONVERSATIONS WITH
YOURSELF AS WELL.
>>I WOULD SAY IT ALSO REQUIRES
HUMILITY.
THE WILLINGNESS TO REALIZE WE
DON'T HAVE ALL THE ANSWERS OR
WE'D BE AT THE POINT OF EQUITY.
SO THIS IS THE POWER OF
MULTI-DISCIPLINARY AND
TRANS-DISCIPLINARY RESEARCH AND
FUNDAMENTALLY WHAT
COMMUNITY-ENGAGED RESEARCH IS TO
THE EXTREME.
THE RECOGNITION WE NEED ALL THE
PERSPECTIVES AROUND THE TABLE TO
COME UP WITH THE BEST SOLUTIONS.
>>AS THE PEDIATRIC EXAMPLE IN
WORKING WITH HEAD START YOUR
SHAPING AND IF THERE'S A WAY TO
MOVE THE STUDENTS FORWARD AND
MOVE THEIR EDUCATIONAL
PREPARATION FORWARD AND HAVING
MEETINGS WITH PARENTS AND STAFF
THAT'S IN HEAD START AND NOT
BRINGING SOMEONE ELSE IN, HIRING
THEM BUT SAYING ARE THERE FAMILY
SERVICE COORDINATORS HERE THAT
WANT TO LEARN A NEW
INTERVENTION, LEARN A NEW SKILL
AND THEN IT STAYS EMBEDDED IN
THE COMMUNITY AFTER YOU'VE LEFT.
AND STUDIES THAT HAVE BEEN
COMMUNITY BASED IS TRYING TO
LOOK ALL THE TALENT ALREADY
THERE AND THOSE OPEN TO
CONTINUING TO LEARN.
I THINK THAT IS IMPORTANT IN OUR
RESEARCH DESIGN.
ALSO, WHAT I TRY TO DO IN THE
PROGRAMS AND IN GRADUATE
STUDENTS SAYING WHAT IS HARD
SCIENCE WHAT DO YOU CALL HARD
SCIENCE AND THIS.
THIS IS HARD SCIENCE.
THAT'S WHY -- I'VE NEVER HAD A
TISSUE CULTURE TALK BACK TO ME.
>>OR WHAT I DID WRONG.
>>I CAN'T COME HERE AND DO
THAT, DR. BELCHER, I DON'T LIKE
THIS OR THAT.
WHAT WE DO IS WE HAVE RESEARCH
ACCOUNTABILITY GROUPS AND BRING
OUR STUDENTS WHO ARE DOING AND
WE SAY WHAT IS THE RESEARCH AND
QUESTIONS SO THEY CAN RESPECT
THE DIFFICULTY EACH ONE AND
CHALLENGES EACH ONE HAS.
I HAD ONE STUDENT WHO I WILL
JUST SAY SHE WAS LIKE,
DR. BELCHER, I DON'T KNOW WHY
I'M SITTING HERE LEARNING ABOUT
HEALTH DISPARITY AND THE SOCIAL
DETERMINATES OF OUR HEALTH AND
WHAT WE SEE THE POLITICAL DERMS
AND I DON'T KNEE WHY WE WE NEED
TO DO THAT AND AND BY THE END OF
THE SESSION SHE SAID, OH, MY
GOSH, I DEVELOPED THIS GREAT
MEDICATION, VACCINE AND I'M NOT
TRUSTED BY THE COMMUNITY.
AND I DON'T GET IT.
THEY DON'T GET IT AND WE HAVE
NOT PROMOTED HEALTH AND
WELLNESS.
THAT'S THE BEST THING PARTICULAR
STUDENT COULD HAVE TOLD ME
BECAUSE SHE WAS JUST LIKE, VERY
DISMISSIVE AND I WAS LIKE MY
GOODNESS BUT BY THE END OF THE
TIME SHE UNDERSTAND IT AND SAID
I SEE YOU AND UNDERSTAND.
>>THAT'S A POWERFUL STUDY,
HAROLYN AND SO POIGNANT IN YOUR
WILLINGNESS TO HOLD THAT
STUDENT'S HAND BECAUSE WE'RE
REWARDED TO WALK AROUND LIKE WE
KNOW WHAT WE'RE DOING AND THAT'S
JUST NOT GOING TO FLY WHEN YOU
DO IT BECAUSE THE REALITY IS
NONE OF US REALLY NOW HOW TO FIX
THESE THINGS.
THIS IS ALL JUST A BEST GUESS.
THIS IS OUR BEST GUESS OF WHAT
WE THINK WILL HAPPEN AND HOW
THINGS WILL TURN OUT.
>>THE HUMBLE ISSUE YOU'RE
TALKING ABOUT.
>>THE HUMILITY.
AND ALL OF US HAVE FAMILY,
FRIENDS, GRANDMAS, SOMEBODY YOU
HAVE TO EXPLAIN WHAT IT IS.
I DON'T KNOW HOW MANY TIMES I
LAD TO EXPLAIN TO MY FATHER THAT
JUST PASSED AWAY, WHAT IS IT YOU
REALLY DO AND DO YOU STILL SEE
PATIENTS, YES, BUT ONLY A LITTLE
BIT.
TO BE ABLE TO EXPLAIN IN REGULAR
LANGUAGE WHAT WE DO IT'S
REMARKABLE HOW ACCULTERATED WE
HAVE BECOME IN THE SCIENTIFIC
WORLD AND THAT ABILITY TO
STRADDLE BOTH AREAS BEING IN AND
OF A COMMUNITY AND AS A
SCIENTIFIC COMMUNITY IS FRANKLY
THE MOST CHALLENGING AND
TRANSFORMATIVE FOR ME AS A
SCIENTIST IN BEING ABLE TO DO
THE WORK.
>>THAT'S WHY I'M EXCITED ABOUT
THE WORK DR. PLAISIME IS DOING
IN HELPING US TO BE
SELF-REFLECTIVE ON INTERACIAL
ANXIETY AND GOING TO SOME OF THE
LEARNING EDGES AND THINKING --
NOW WE'RE ALL TALKING ABOUT THE
FILTRATION RATES AND PULMONARY
FUNCTION TESTS AND TALKING ABOUT
WE DON'T HAVE THE INSTRUMENTS
THAT MEASURE PULSE OX ACROSS
DIFFERENT PIGMENT TONES.
MAYBE WE WERE SENDING BLACK FOLK
HOME FROM THE HOSPITAL DURING
THE HOSPITAL BECAUSE OUR POST-OX
MEASUREMENTS WEREN'T ACCURATE
FOR THE SKIN TONE.
THESE ARE THINGS WE CAN CORRECT
BUT IF WE'RE NOT THINKING ABOUT
IT, IF WE'RE NOT QUESTIONING
OURSELVES OR HUMBLE
RESEARCH-WISE, WE'RE GOING TO
CONTINUE TO DO THE SAME THING,
GET THE SAME RESULTS.
IT'S NOT ACCEPTABLE NOW.
WE REALLY NEED TO HAVE YOUNG
FOLKS MAYBE DO SOME OF THAT
INNOVATIVE THINKING FOR US
>>ONE ASPECT OF THE QUESTION
NOW I WANT YOU TO HONE IN ON A
BIT MORE IS THE RECIPROCITY IN
THE RELATIONSHIP WITH COMMUNITY
PARTNERS AND WE WANT THEM TO
TRUST US AND WE'RE NOT GOING TO
TO BE HARMFUL AND WE TALKED
ABOUT BEING BI-DIRECTIONAL.
HOW DO YOU EXPLAIN TO EVERYONE
IN THE ROOM ABOUT WHAT IS THE
RECIPROCITY THERE AND WHAT
SHOULD COMMUNITY PARTNERS EXPECT
FROM YOU AS A SCIENTIST DOING
THE WORK OTHER THAN RETURNING
THE FINDINGS TO THE COMMUNITY OR
HOW DOES THAT PLAY OUT IN REAL
LIFE?
ANYONE.
THIS IS FOR IN.
-- FOR ANYONE.
>>I THINK SOME OF THIS IS OUR
COMMUNITY MEMBERS CAN SEE OUR
GROWTH.
I WAS WORKING AT A CHURCH-BASED
GROUP AND WE LOOKED AT HOW CAN
WE PROVIDE INTERVENTION TO
FOSTER CARE THIS WAS THE
CHURCH'S MISSION WAS TO HELP
WITH THE COMMUNITY PHOR INFANTS
AND BABIES THAT WERE HIV
POSITIVE OR HAD INTRAUTERINE
DRUG EXPOSURE AND WE WOULD GO TO
THE PARISH HALL AND DO
ASSESSMENTS AND PARENTING AND I
THINK THERE WAS A CONNECTION
WHEN YOU WORK WITH THE COMMUNITY
AS PART OF THE FAMILY AND BY THE
END OF THE COUPLE YEARS WE'D BE
IN THE KITCHEN AND ANY PLACE IN
THE PARISH HALL WE CAN DO AN
EXAMINE WITH THE CHILD AT THE
END IT WAS VERY TOUCHING THEY
CREATED A LITTLE CHAPEL THAT WAS
A CHILDREN'S CHAPEL SO WE COULD
HAVE A PLACE THAT WAS OUR OWN
THAT WAS MORE CHILD FRIENDLY.
I THINK THOSE ARE THE THINGS
THAT MAKE A DIFFERENCE IN
CHANGING THE COMMUNITY AND PART
OF THE FAMILY AND THE WORK YOU
DO AND KNOWING IT THE CONTINUE
TO THIS DAY.
>>THAT'S BEAUTIFUL, HAR I LIN.
-- HAROLYN.
I REMEMBER YEARS AGO I WAS ON A
PANEL WITH BETINA BEACH AND SHE
TALKED ABOUT SHOWING UP NOT ONLY
BECAUSE YOU HAVE A LETTER OF
SUPPORT OR HAVE A GRANT OR HAVE
A PROJECT.
IT'S SHOWING UP WHEN YOU DON'T
WANT ANYTHING.
YOU JUST WANT TO BE IN
RELATIONSHIP.
BEING THERE WHEN YOU GET THE
CALL AND BEING WILLING TO STAND
IN THE FIRE.
WHEN YOU'RE GETTING ADDRESSED
DOWN BECAUSE OF SOMETHING YOU
DID OR DIDN'T DO OR SOMETHING
THAT SOMEBODY FROM THIS
UNIVERSITY DID.
I REMEMBER THEY WERE SOME PEOPLE
AT UNC WERE COLLECTING CHEEK
SWABS FOR OUR GENETIC STUDY AND
A GOT CALLED BY ONE OF MY
PARTNERS AND HE WAS LIKE YOUR
UNC PEOPLE -- AND I WAS LIKE,
WAIT A MINUTE, WHAT?
WHAT ARE YOU TALKING ABOUT?
I HAD TO GO AND FIGURE IT OUT.
I HAD TO GO FIND OUT AND
RESEARCH THIS AND COME BACK AND
GET THAT INFORMATION AND PUT HIM
IN TOUCH WITH THIS INVESTIGATOR
AND BROKER THAT RELATIONSHIP.
IT WASN'T SOMETHING I WAS DOING
BUT IT WAS MY OBLIGATION TO BE
THERE.
IT'S SHOWING UP WHEN YOU WANT
AND BEING THERE WHEN SOMETHING
IS WANTED.
>>I'M GOING TO ASK ONE MORE
QUESTION BECAUSE WE WANT TO HAVE
AN OPPORTUNITY TO ANSWER SOME
QUESTIONS THAT HAVE COME IN SO
FAR AND OTHERS THAT MAY COME IN.
PRETTY QUICKLY, FOR EACH PANEL
MEMBER, WHEN YOU THINK ABOUT THE
FUTURE OF COMMUNITY-ENGAGED
RESEARCH THAT APPLIES TO HEALTH
EQUITY LENS IS ONE MESSAGE YOU
WOULD LIKE TO GIVE TO
INVESTIGATORS CURRENTLY WORKING
IN OR CONSIDERING ENTERING THIS
FIELD?
>>DR. BELCHER.
>>
>>BEING AN ACTIVE LISTEN AND
SEEING PEOPLE AND BEING IN THE
MOMENT.
I THINK THOSE ARE ALL REALLY
IMPORTANT LEARNING LESSONS.
I THINK RECOGNIZING THE STRENGTH
IN THE COMMUNITY AND I TRY TO BE
VERY SOLUTIONS ORIENTED AND
SEEING STRENGTHS BECAUSE OF MY
FAMILY HISTORY AND THOSE I LOVE
AND WHAT PEOPLE HAVE ENDURED TO
GET TO THIS POINT, I RESPECT THE
JOURNEY.
>>GREAT.
DR. PLAISIME.
>>THIS WAS BEAUTIFUL.
IN ADDITION TO SUSTAINABILITY
IT'S SO IMPORTANT TO THINK ABOUT
DISSEMINATION.
IT'S SO OFTEN THAT WE ARE
OBSESSED, I'LL SAY, WITH TRYING
TO FIND THE PERFECT GRANT OR
PUBLISH OUR FINDINGS IN THE TOP
JOURNAL BUT THERE'S SO MUCH DATA
WE HAVE THAT ISN'T READILY
AVAILABLE OR ACCESSIBLE
DIFFERENT COMMUNITIES SO HOW DO
WE USE SOCIAL MEDIA TO
DISSEMINATE THE INFORMATION THAT
WE HAVE IN A DIGESTIBLE WAY FOR
OUR WORK TO BE MEANINGFUL AND TO
HAVE IMPACT THAT WE'RE INTENDED
TO DO AND STEPPING OUTSIDE OF
OUR ACADEMIC SILOS AND REALIZE
THAT THERE ARE PEOPLE AT THE
CENTER OF THIS WORK AND SO I
GUESS TWO-FOLD, SUSTAINABLE AND
DISSEMINATION AND HOW DO WE TAKE
IT OUT OF THE IVORY TOWER --
>>AND POLICY.
>>AND MOVE IT FORWARD TO PEOPLE
WHO CAN MOVE IT.
>>IT'S ONE MESSAGE YOU'D LIKE
TO GIVE TO INVESTIGATORS
CURRENTLY WORKING IN THE FIELD
OR CONSIDERING ENTERING IT?
>>I WOULD GO BACK TO THE AUDRA
LORD TOOLS THE MASTER'S TOOLS
WILL NEVER DISMANTLE THE
MASTER'S HOUSE.
FOR US TO THINK OF INCLUSIVE WE
NEED NEW PARADIGMS AND NEED TO
BE INNOVATIVE IN THE WAYS AND
NOT BOUNDED BY THE PARADIGMS,
THEORETICAL MODELS PASSED ON
OVER AND OVER THAT LED TO THE
RECAPITULATION OF SO MUCH HEALTH
INEQUALITY.
I WOULD SAY THAT WE NEED -- TO
ME IF WE'RE GOING TO DISMANTLE
THE MASTER'S HOUSE WE NEED NEW
TOOLS.
>>AMAZING.
AMAZINGLY WELL SAID ALL OF YOU.
I'D LIKE TO TURN IT OVER TO OUR
MODERATOR, DR. SALAZAR TO POSE
ANY QUESTIONS THAT HAVE COME
INTO THE CHAT.
>>THANK YOU ALL.
THAT WAS AN OUTSTANDING
CONVERSATION I LEARNED A LOT AND
APPRECIATIVE OF YOU SHARING YOUR
TIME AND SHARING YOUR WISDOM
WITH US.
I DO HAVE QUESTIONS FROM THE
AUDIENCE.
ONE OF THE FIRST QUESTIONS
TOUCHES A LITTLE BIT ON HEALTH
EQUITY TOURISM.
AND STATES AND OFTEN UNDER
REPRESENTED SCIENTISTS MUST ACT
AS GATE KEEP ERS AND PROTECT
FROM INVESTIGATORS WHO DO NOT
KNOW ON THE COMMUNITY BUT WANT
TO JUMP ON THE TRAIN BECAUSE OF
GROWING FUNDING INCENTIVES.
WHAT ADVICE DO HAVE YOU FOR
COPING THESE SITUATIONS
PARTICULARLY FOR EARLY CAREER
INVESTIGATORS?
>>IT'S SOMETHING MYSELF AND MY
COHORT HAVE THOUGHT ABOUT AND
DESIGN A TOOL WHERE YOU CAN
FIGURE OUT WHO IS ARE DOING
PROJECTS RELATED TO RACISM.
YOU CAN PUT A PERSON'S NAME IN
THE TOOL AND SEE HOW MANY
PUBLICATIONS, HOW MANY GRANTS
HAVE THEY HAD LRELATED TO YOUR
RESEARCH TOPIC AND LONGEVITY AND
BUILDS TRANSPARENCY TO SEE WHO
IS INVESTED IN THE WORK AND WHO
IS NOT AND WE'RE EXCITE ABOUT
THE TOOL AT THE FOREFRONT AND
DISSEMINATE THAT IN THE FUTURE.
>>ISN'T THAT CLEVER.
MAKING IT SCHOLARSHIP.
ONE THING I WOULD MAYBE
RECOMMEND OR SAY IS FOR THE NIH
WHEN YOU'RE FILLING OUT THE
FORMS AND EVERYTHING YOU HAVE TO
PUT WHO YOUR POPULATION IS GOING
TO BE BY RACE, ETHNICITY,
GENDER, I DON'T KNOW WHETHER
THEY HAVE DIFFERENT GENDERS BUT
ALL OF THESE DIFFERENT
CATEGORIES BUT WHEN YOU LOOK AT
THE RESEARCHERS YOU DON'T ALWAYS
HAVE THE INFORMATION BUT IF YOU
GO FROM PRE-CONTEMPLATIVE TO
CONTEMPLATIVE, YOU MAY WALK DOWN
THE HALL FURTHER AND GET TO KNOW
OTHER COLLEAGUES WHO MAY BE
DOING MORE OF THIS WORK IF THIS
IS NEW TO YOU.
SO YOU WANT TO CREATE THIS
NETWORK OF COLLEAGUES WHO ARE
ABLE TO WORK TOGETHER AND TO
GROW TOGETHER IN THIS SPACE.
THIS IS A VERY IMPORTANT
QUESTION AND THERE ARE A LOT OF
PROGRAMS THAT ARE COMING ONLINE
BECAUSE THEY'RE JUST SEEING THE
LIGHT SO TO SPEAK AND IT'S NOT
ALWAYS EASY TO SAY BECAUSE MANY
TIMES PEOPLE WHO HAVE NIH
FUNDING CONTINUE TO GET IT AND
WE WERE IN A CONVERSATION
ACTUALLY THE OTHER DAY IN TERMS
OF LOOKING AT REVIEW PANELS AND
THE DIVERSITY OF REVIEW PANELS
AND THE BIAS IN REVIEW PANELS
FOR NIH GRANTS AND THINKING
ACROSS THE DIFFERENT SYSTEMS OF
FUNDING WHERE THERE MAY BE SOME
BIAS STRUCTURAL AND
INSTITUTIONAL RACISM AND
STRATEGIES THAT HAVE BEEN USED
SINCE TIME AND MEMORIAL.
LOOKING AT OUR SCORING SYSTEM,
WHO IS DOING THE SCORING, AND
WHO IS DOING THE RESEARCH.
>>AND I WAS THINKING OF THE
GENIUS TOOL PUTTING IN THE WORD
STRUCTURAL RACISM IN OUR EARLY
WORK WOULD NOT HAVE GOTTEN IT
PUBLISHED FRANKLY.
I REMEMBER SCATHING REVIEWS WHEN
I WAS ON A PAPER THAT I WROTE
SUGGESTING AND ADVOCATING FOR
MOVING FROM MINORITY INCLUSION
RESEARCH TO ADVANCING HEALTH
EQUITY THERE SHOULD BE SOME
INTENTIONAL BRIDGE.
IT WAS IS VITRIOLIC AND MORE
AFFECTIVE THAN THE SCIENCE I WAS
WRITING ABOUT.
I WOULD AS WE THINK WITH THE
TOOLS REALIZE WE'VE COME A LONG
WAY AND WE STILL HAVE A LONG WAY
TO GO AND THERE'S THE IDEA THE
SOFT SCIENCE AND I DON'T KNOW
HOW THAT TERM GOT IN THERE AS IF
SOMEHOW AS A SCIENTIST I'M GOING
TO LOSE THIS LESS RIGOROUS
RESEARCH I FEEL THERE'S AN
OBLIGATION TO BRING THE HIGHEST
STANDARDS TO THE WORK BECAUSE OF
THE POPULATIONS I'M WORKING WITH
THAT I'VE BEEN DISCRIMINATED
WITH AND WHY WOULD I CONTRIBUTE
IN THAT WAY.
I GET DEEPLY OFFENDED BY THE
IDEA OF SOFT SCIENCE AND FOR
THOSE OF OUR COLLEAGUES WHO NOW
THE VEIL HAS BEEN LISTED AND
THEY REALIZE INEQUALITIES EXIST
I THINK THERE'S THE PERCEPTION
THIS IS THE EASY WORK TO DO AND
THEY CAN PLUG IN A VARIABLE AND
A MEASURE OF RACE INTO THEIR
WORK -- RACISM BUT SOME MEASURE
OF RACE IN THEIR WORK AND DO
ADDITIONAL ANALYSIS AND NOW
THEY'RE DOING HEALTH EQUITY
WORK.
>>AND I THINK FROM THE SEMINAR
OR PANEL BEFORE US LOOKING --
BEING VERY CAREFUL WITH THE
RESULTS THAT WE GET.
AND LOOKING AT THE CONTEXT.
I THINK THERE WERE VALID POINTS
RAISED IN HOW WE -- WHETHER WE
USE MIXED METHOD OR QUALITATIVE
AND QUANTITATIVE COMPONENTS IN
OUR ANALYSIS AND BEING VERY
SOMETIMES THE RESULTS ARE
NUANCED AND BEING CAREFUL ABOUT
THE CONCLUSIONS WE CAN DRAW FROM
THE WORK.
>>IN TALKING ABOUT THE DEFICIT
FRAMEWORK YOU MENTIONED YOU
MENTIONED THE USE OF REMEDIATION
FOR YOUNG RESEARCHERS AND FROM
BACKGROUNDS IF YOU CAN SHARE
STORIES OR INTERVENTIONS YOU
UTILIZED TO BE EFFECTIVE TO
COMBAT THAT FRAMEWORK?
WE ASKED ABOUT A TRAINING
PROGRAM THEY WERE A PART OF AND
THEY SAID, YES, I DEFINITELY
VALUE DIVERSITY.
WE RANK ALL THE APPLICATIONS AND
THEN GO DOWN TO THE BOTTOM AND
PULL PEOPLE UP AND PULL PEOPLE
UP WHO ARE DIVERSE CANDIDATE.
I THOUGHT WELL, I'M NOT GOING TO
BE AT THE BOTTOM.
I MAY NOT EVEN APPLY IF THAT'S
THE SENTIMENT ALL SCHOLARS OF
COLOR ARE GOING TO BE AT THE
BOTTOM OF THE LIST.
AND NOT THAT THEY BRING THE
DETERMINATION THAT GOT THEM
SITTING AT THE SAME TABLE AS THE
OTHER SCHOLARS WHO DIDN'T HAVE
THE OBSTACLES TO OVERCOME.
I FIND THAT IN ACADEMIA WHEN
WE'RE TALKING ABOUT DIVERSITY
PROGRAMS SEPARATE FROM EQUITY
AND WE'RE NOW TALKING DIVERSITY,
MANY OF THE PROGRAMS ARE NOT
ELEVATING THE STRENGTHS OF THOSE
INDIVIDUALS BRING TO THE TABLE
AND THEY'RE TALKING ABOUT AND
FOCUSSING ON GAPS, PERCEIVED OR
REAL INDIVIDUALS MAY HAVE AND
IT'S NOT ELEVATING OR EVEN AS WE
THINK ABOUT THE INSTITUTIONS
HAVE PROGRAMS TO SUPPORT THE
DIVERSITY OF FACULTY ADDING
ADDITIONAL RESOURCE TO A
RECRUITMENT PACKAGE, ETCETERA.
AND YET THOSE ARE SEEN AS THE
AFFIRMATIVE PROGRAMS AND THE
SUPREME COURT IS HEARING
ARGUMENTS ABOUT DISMANTLING
AFFIRMATIVE ACTION IN THE
STUDENT BODY SELECTION AND THE
IDEA THERE'S REMEDIATION OR
DEFICIT -- ACROSS THE BOARD
UNIVERSAL THAT THERE'S SOMEHOW
LESS THAN TO ME IS BAFFLING.
INSTITUTIONAL AND STRUCTURAL
BARRIERS TO MAKE IT FOLKS NOT
ABLE TO ADVANCE.
IT'S NOT A DEFICIT OF THE
INDIVIDUAL.
IT'S A DEFICIT OF THE
INSTITUTIONS.
>>SO THERE'S A SAYING, YOU HAVE
TO GO TWICE AS FAST TO GO TWICE
AS HARD.
>>WORK TWICE AS HARD AND IT'S
NOT BECAUSE THE PERSON DOESN'T
KNOW WHAT THEY'RE DOING IT'S
BECAUSE IT'S NOT SET UP TO VALUE
THEIR CONTRIBUTIONS.
>>AND THEN THERE'S DOZE WITH
DISABILITIES.
WE HAVE A LOT OF MARGINALIZED
POPULATIONS CHALLENGED BY THE
STRUCTURES WE HAVE.
WE TALK ABOUT THE G.R.E.
WE KNOW IT DOES NOT DEMONSTRATE
HOW EFFECTIVE YOUR GOING TO BE
ON THE OTHER SIDE OF YOUR DEGREE
BUT MORE OF A GATE KEEPER IF
I'VE BEEN EXPOSED TO A WHITE OR
MIDDLE-CLASS EDUCATIONAL
ENVIRONMENT IT DOESN'T HAVE THE
PREDICTIVE VALIDITY AND SCHOOLS
ARE MOVING AWAY FROM THAT AND
S.T.E.M. SCIENCE I WON'T SAY
HARD SCIENCE BUT SOME OF THE
SOCIAL SCIENCES SEND IT TO TEND
TO GRAB IT AND KEEP IT BUT THE
SATs AND EVERYTHING, THEY'RE
STRUCTURAL -- WE HAVE THE DATA
TO PROVE THE ACCEPTANCE BASED ON
THE FACTORS.
THEY'RE NOT VALID.
I WON'T SAY EQUITABLE.
THEY'RE NOT VALID.
ENOUGH TO BE ABLE TO ADDRESS
THAT.
>>THANK YOU VERY MUCH FOR A
FANTASTIC SESSION AND TAKING
TIME TO ANSWER THE QUESTIONS.
THANK YOU VERY MUCH TO THE
AUDIENCE FOR ASKING THE
QUESTIONS AND ATTENDING THE
SESSION.
I WILL TURN IT OVER TO DR. HE
WILL ILIAS.
>>THANK YOU SO MUCH,
DR. SALAZAR, DR. WEBB-HOOPER AND
DR. PLAISIME AND DR. CORBIE.
WE ENDED WITH A FABULOUS SESSION
AND THANK YOU FOR PARTICIPATING
AND I WANT TO TAKE A MINUTE TO
THANK THE PANELISTS AND SPEAKERS
TO TAKE TIME FROM THEIR BUSY
SCHEDULES TO DO THIS AND EACH
SESSION HAS BEEN AMAZING WITH SO
MANY INSIGHT IT WILL TAKE A WHIL
TO UNPACK ALL OF IT.
WITH THAT I'LL HAND IT OVER TO
DR. XINZHI ZHANG FOR CLOSING
REMARKS IS THE HEALTH CHIEF OF
THE GLOBAL HEALTH BRANCH AT THE
CENTER FOR TRANSLATIONAL
RESEARCH SCIENCES AT THE
NATIONAL NATIONAL HEART, LUNG
AND BLOOD INSTITUTE.
DR. ZHANG, PLEASE PROVIDE
CLOSING REMARKS.
>>THANK YOU.
>>I JUST WANT TO THANK YOU
EVERYONE.
WE HAD A GREAT WORKSHOP TODAY.
WE WANT TO THANK EVERYONE ALL
ATTENDEES THAT HAVE SPENT THE
GREAT TWO DAYS WITH US.
WE THANK THE MODERATORS, CHAIRS,
PANELISTS AND DISTINGUISHED
SPEAKERS AND THE COMMITTEE.
THEY WORKED HARD TO MAKE
EVERYTHING HAPPEN.
AND THANK THE LOGISTIC TEAM AND
TECHNICAL ASSISTANCE TEAM AND
OUR CO-SPONSORS IN NIMHD TO MAKE
IT A WONDERFUL TIME FOR US AND
INSPIRING.
THIS IS ACTUALLY A SLIDE A
NATIONAL ACADEMY SLIDE
DR. HOOPER MENTIONED EARLIER.
SOMETIMES I FEEL LOST IN MY 20
YEARS OF PUBLIC HEALTH CAREER BY
ANALYZING DATA, PUBLISHING
PAPERS, REPORT, FOLLOWING THE
BUREAUCRATIC SOP AND FORGOT THE
FUNDAMENTAL REASON WHY I LOVE
PUBLIC HEALTH.
I LOVED SEEING HEALTH EQUITY AS
A KEY TO TRANSFORM OUR
MARKET-DRIVEN COMPLEX HEALTH
CARE SYSTEM IN THE COUNTRY.
IN ADDITION TO ALL THE CORE
PRINCIPLES OF THE COMMUNITY
ENGAGEMENT WE TALKED ABOUT AND
THE FRAMEWORK IT WOULD BE GREAT
TO REMIND OURSELVES OF A COUPLE
THINGS OUR DISTINGUISHED
SPEAKERS, PANELISTS MENTIONED IN
THE WORKSHOP.
FIRST OF COURSE, DIVERSITY AND
INCLUSIVITY IS THE MOST
IMPORTANT AS WE JUST HAD IN THE
SESSION.
NOT ONLY THE DIVERSITY OF
RESEARCH TEAMS INCLUDING
COMMUNITY LEADERSHIP BUT ALSO OF
THE DIFFERENT OPINIONS AND THE
WAYS TO DO THINGS DIFFERENTLY.
A NEW GENERATION OF COMMUNITY
RESEARCH NEEDED.
CRITICAL TO BUILDING ALSO SUS
STINABLE RELATIONSHIP, TRUST,
PARTNERSHIP.
MANY TIMES BUILDING TRUST MAY
TAKE YEARS HOWEVER, EARNING THE
TRUST MAY ONLY TAKE ONE NIGHT.
IN ADDITION TO THE TOOLS AND
TECHNOLOGIES AND BIG DATA,
INNOVATIVE OUTREACH TECHNOLOGIES
BI-DIRECTIONAL LEARNING IS
IMPORTANT.
PERSONAL TOUCH IS IMPORTANT.
KNOWLEDGE IS NOT ALL FROM BOOKS.
WE SOMETIMES FORGOT THAT.
CULTURE, HISTORY, STORIES PLAY
SIGNIFICANT ROLES IN
COMMUNITY-ENGAGED RESEARCH.
ADDITIONALLY, CHANGE IS NEEDED.
SOLUTION IS NEEDED.
REACHING OUT TO THE COMMUNITY,
MEETING COMMUNITY MEMBERS IS OUR
FIRST STEP IF OUR RESEARCH
CANNOT REDUCE DISPARITIES,
CANNOT CHANGE IN APPROPRIATE
POLICIES, SYSTEMS, CANNOT MAKE
COMMUNITY HEALTH CARE FELT AND
FINALLY IT'S FOREIGN BUILD UP
COMMUNITY RESILIENCE AND
COMMUNITY POWER.
THE BASE IN RESPONDING TO ANY
PANDEMIC, ANY PUBLIC HEALTH
EMERGENCIES ALL IN ALL, THE
REASON WE STUDY PUBLIC HEALTH
CAREER.
I WANT TO MENTION THIS
MAGNIFICENT PROGRAM AGAIN AND
MENTION THAT IN OPENING REMARKS.
IT'S A GAME CHANGER EFFORT TO
BRING COMMUNITIES AND
RESEARCHERS TOGETHER AND LET US
WORK OUT OF OUR COMFORT ZONE TO
TALK TO EACH OTHER TO LEARN FROM
EACH OTHER, STEP AWAY FROM THE
OFFICE OF WASHINGTON, D.C. AND
AWAY FROM ACADEMIC INSTITUTIONS
AND UNIVERSITY CAMPUS AND FROM
LOCAL COMMUNITY ORGANIZATIONS SO
DEFINITELY CHECK THAT OUT AND
REACH OUT TO US IF THERE'S ANY
QUESTIONS WE'RE ALL HERE TO
SERVE AND SUPPORT.
ONCE AGAIN, THANK YOU EVERYONE
FOR ALL THE EXCELLENT
SUGGESTIONS, IDEAS, DISCUSSIONS
DURING THE TWO DAYS.
IT'S AMAZING.
AND YOU'RE PASSION WILL LEAD US
FORWARD.
THANK YOU.
S
>>I HAVE TO BE THE CHANCE TO BE
THE CO-CHAIR OF THIS WORK SHOP
OF AND THOUGH THIS MARKS THE END
OF THIS WORKSHOP I SEE IT AS THE
BEGINNING.
ONCE THERE WAS A QUESTION FROM
THE AUDIENCE ASKING WHERE WERE
YOU 15 YEARS AGO AND NOT JUST
TAKE STAY IDLE BUT KEEP MOVING
FORWARD BUT THERE'S OTHER
COUNTING ON US AND HOPE WE HAVE
BEEN INSPIRED TO WHAT WE WILL DO
IN OUR NEXT STEPS WITHIN THE
FIELD AND I'D LIKE TO ALSO THANK
OUR ATTENDEES WHO HAVE JOINED US
FROM ALL OVER THE WORLD IN THE
PAST TWO DAYS.
YOU CAN WATCH THIS AS A
RECORDING AND THANK OUR
PANELISTS AND SIX MODERATORS AND
SIX SPEAKERS WHO ENGAGED IN
PROFOUND CONVERSATION IN
ADVANCING THE HEALTH DISPARITIES
RESEARCH AND EMPOWERING VOICES
AND I WANT TO THANK THE PLANNING
COMMUNITY THAT HAVE WORKED TO
MAKE THE WORKSHOP POSSIBLE AND
DR. ILIAS AND OTHERS AND THE
LOGISTICAL TEAM.
AND THANK OUR PARTNERS FROM THE
NATIONAL INSTITUTE OF AGING AND
DISPARITIES RESEARCH AND
SUPPORTING EFFORTS IN
COMMUNITY-ENGAGED RESEARCH.
FOR OUR ATTENDEES, IF YOU'D LIKE
TO KNOW MORE ABOUT OUR PANELISTS
AND SPEAKERS, REMEMBER THE EVENT
WEBSITE WHICH CONTAINS
EVERYONE'S PHOTOS AND BIOS
INCLUDING OUR AGENDA AND OUR
WEBSITE WILL BE WHERE WE SEE THE
RECORDING FOR TODAY'S AND
YESTERDAY'S EVENTS AND THE
WORKSHOP SUMMARY IN THE MONTHS
TO COME.
LASTLY, WE ASK YOU TO FILL OUT
OUR POST-WORKSHOP EVALUATION.
REMEMBER TO FILL OUT OUT TO
INFORM US TO YOUR FEEDBACK AND
HELP US IN THE PLANNING OF
FUTURE EVENTS.
WITH THAT BEING SAID, I THINK I
CAN SAY ON BEHALF OF THE NHLBI
WE THANK YOU ALL FOR YOUR
PARTICIPATION AND WISH YOU A
GREAT DAY.
THIS HAS BEEN EXCELLENT.
THANK YOU.