>> SO GOOD AFTERNOON, EVERYONE.
WELCOME TO OUR AUGUST HERO
LECTURE OR HEALTH EQUITY
RESEARCH OUTREACH LECTURE ON
ADVANCING LEATH EQUITY THROUGH
COMMUNITY-ENGAGED RESEARCH.
LIKE OUR APRIL LECTURE, THIS IS
ALSO A PART OF OUR CENTER FOR
TRANSLATION RESEARCH AND
IMPLEMENTATION SCIENCES 10th
ANNIVERSARY CELEBRATION AND
ALIGNS WITH ANOTHER KEY PILLAR
OF THE CTRIS MISSION
COMMUNITY-ENGAGED RESEARCH.
SO FOR ALL OF YOU NOT EXTREMELY
FAMILIAR WITH THE HERO SERIES AS
WE LIKE TO CALL IT IT'S FOUNDED
FOR THE CENTER CTRIS IN LINE
WITH THE NHLBI STRATEGIC VISION
TO ADDRESS HEALTH DISPARITIES
AND ESTABLISHED TO HIGHLIGHT THE
GLOBAL AND DOMESTIC HEALTH
EQUITY RESEARCH ACROSS THE NIH
AND OTHER FEDERAL AGENCIES AND
PARTNERS WITH THE GOAL OF
PROMOTING OPPORTUNITIES TO
COLLABORATE AND ADVANCE HEALTH
EQUITY.
SO I MENTIONED EARLIER THE KEY
PILLARS THAT DEFINE CTRIS'
MISSION.
IT HIGHLIGHTS RESEARCH THAT
SEEKS TO ADDRESS INEQUITIES IN
HEALTH A KEY PILLAR.
WHAT WE'RE DOING AS PART OF OUR
10th ANNIVERSARY HERO SERIES IS
IS TO LEEK AT HEALTH INEQUITIES
FROM THE GLOBAL PERSPECTIVE AND
THE FIRST PILLAR WE DID IN OUR
APRIL LECTURE AND LOOKING AT IT
THROUGH THE LENS OF
IMPLEMENTATION AND
COMMUNITY-ENGAGED RESEARCH THE
FOCUS OF OUR DISCUSSION TODAY.
AS SEEN HERE, TRAINING AND
CAPACITY BUILDING IS A THEME
THAT CROSS CUTS ALL THE WORK WE
DO AT CTRIS.
SO THIS SLIDE HIGHLIGHTS SOME
KEY PROGRAMS THAT SHOWCASE THE
PILLARS OF CTRIS' MISSION
INCLUDING PROGRAMS LIKE DECIPHER
THROUGH COORDINATED INTERVENTION
TO PREVENT AND CONTROL HEART AND
LUNG DISEASE RISK AS WELL AS THE
NIH COMMUNITY ENGAGEMENT ALIGNS
OR SELE.
WE START THE SERIES IN 2022 AND
HAD THE HONOR OF HOSTING AMAZING
SPEAKERS FROM MANY SEMINARS ON
LECTURES.
IN FACT, THE SPEAKERS HAVE
TOUCHED ON HEALTH EQUITY
RESEARCH IN THE CONTEXT OF
TOPICS LIKE CLIMATE HEALTH
WOMEN'S HEALTH ACROSS THE LIFE
SPAN TO SICKLE CELL DISEASE AND
BUILDING TRUST VIA HEALTH
COMMUNICATION AND DISSEMINATION.
TODAY'S HERO LECTURE WILL DELVE
INTO ADVANCING HEALTH EQUITY
THROUGH COMMUNITY ENGAGED
RESEARCH BY SHOWCASING LESSONS
LEARNED AND BEST PRACTICES FROM
THE PROSPECTIVE OF PROGRAMS SUCH
AS THE PATIENT-CENTERED OUTCOME
INSTITUTE AND THE CEACR AND HAVE
UPDATES SOON TO BE RELEASED
PRINCIPLES OF COMMUNITY
ENGAGEMENT.
QUICK HOUSEKEEPING WE REQUEST IF
YOU'RE NOT SPEAKING, PLEASE MUTE
YOURSELF AND SPEAKERS CAN STAY
ON CAMERA BUT ONLY THE KEY
PANELISTS AND SPEAKERS ARE
REQUESTED TO KEEP THEIR VIDEOS
ON FOR BANDWIDTH.
WE'RE RECORDING THIS AND IT'S
GOING TO BE VIDEOCAST.
THE RECORDING WILL BE AVAILABLE
TO BE VIEWED LATER AND SHARED AT
LARGE.
AND FOR ANY TECHNICAL ISSUES,
PLEASE GO AHEAD AND POST THEM IN
THE CHAT AND QUESTIONS AS THEY
COME UP.
WITH THAT I'D LIKE TO HAND IT TO
THE DIRECTOR TO THE CENTER FOR
TRANSLATION RESEARCH AND
IMPLEMENTATION SCIENCE TO KICK
OFF THE HERO LECTURE, DR. GEORGE
MENSAH.
>> GOOD AFTERNOON, LADIES AND
GENTLEMEN.
WE'RE DELIGHTED TO HAVE YOU AND
GOOD MORNING TO THOSE OF YOU
JOINING US FROM THE WEST COAST
AND EARLIER TIME ZONES.
IT'S REALLY TRULY AN HONOR AND
PRIVILEGE FOR ME TO WELCOME YOU
TO THIS 2024 HERO LECTURE SERIES
SESSION.
AS YOU HEARD FROM DR. ILIAS IT'S
PART OF OUR CENTER'S 10th
ANNIVERSARY CELEBRATION.
WE WANT YOU TO PARTAKE IN THIS
CELEBRATION.
AGAIN, AS YOU HEARD EARLIER
TODAY'S SESSION ON ADVANCING
HEALTH EQUITY THROUGH COMMUNITY
ENGAGED RESEARCH ASCENDED AROUND
THE TOPIC IS A MATTER OF
PRESSING NATIONAL IMPORTANCE.
OUR PRIMARY GOAL IN THE LECTURE
IS SO SHARE LESSONS LEARNED WITH
COMMUNITY-ENGAGED RESEARCH
THROUGH PROGRAMS LIKE THE ONES
THAT PCORI SUPPORTS AND OUR NIH
COMMUNITY ENGAGEMENT ALLIANCE WE
CALL CELE AND THEY'RE DESIGN TO
DETERMINE PROMISING PRACTICES
BASED ON THE CORE FOUNDATIONS OF
COMMUNITY ENGAGEMENT SUCH AS
THOSE SHOWN IN THE UPCOMING NEW
3rd EDITION OF THE PRINCIPLES OF
COMMUNITY ENGAGEMENT YOU HEAR
ABOUT FROM DR. LIZ COHN.
AS YOU KNOW, WE'RE AT A PIVOTAL
MOMENT IN THE FIELD OF HEALTH
EQUITY.
THE COVID-19 PANDEMIC REALLY
MAGNIFIED FOR US TO CLEARLY SEE
THE LONG STANDING GAPS AND
INEQUITIES IN HEALTH OUTCOMES
ESPECIALLY ACROSS RACIAL AND
SOCIO ECONOMIC LINES.
SO THIS LECTURE IS A POWERFUL
REMINDER OF OUR COMMITMENT TO
BRING THESE GAPS THROUGH
RESEARCH THAT IS INCLUSIVE,
RESEARCH THAT IS EQUITABLE AND
RESEARCH THAT IS DEEPLY EMBEDDED
IN AND ENGAGED WITH THE
COMMUNITIES WE AIM TO SERVE.
WE HAVE A TRULY DISTINGUISHED
PANEL OF EXPERTS TODAY AND IN
JUST A MINUTE I'LL TAG DR. ILIAS
AGAIN TO INTRODUCE OUR PANELISTS
AND HELP MODERATE THE
DISCUSSION.
BEFORE I DO THAT, I'D LIKE TO
TAKE A MOMENT ON BEHALF OF ALL
OF US AT CTRIS TO ACKNOWLEDGE
AND THANK DR. COOK AS THE
DRIVING FORCE OF OUR CENTER FROM
THE BEGINNING.
AS CHIEF OF STAFF TO GARY
GIBBONS OUR INSTITUTE DIRECTOR
BACK IN 2013, DR. COOK PLAYED AN
INSTRUMENTAL ROLE IN THE SERIES
OF RETREATS AND DISCUSSIONS THAT
LED TO THE FOUNDING OF CTRIS IN
2014.
HER VISIONARY LEADERSHIP WITH
PROFESSIONAL DEDICATION TO
ADVANCING HEALTH EQUITY AND
COMMITMENT TO COMMUNITY-ENGAGED
RESEARCH LAID THE FOUNDATION FOR
WHAT CTRIS HAS BECOME TODAY.
SO AS WE CELEBRATE OUR 10th
ANNIVERSARY AS A CENTER, WE
WOULD LIKE TO SAY THANK YOU TO
DR. COOK.
IN CLOSING, I WANT TO EXTEND MY
SINCERE THANKS TO ALL OUR
DISTINGUISHED PANELISTS, TO ALL
OF OUR PARTNERS ESPECIALLY OUR
COMMUNITY PARTNERS AND
COMMUNITY-BASED ORGANIZATIONS WE
WORK WITH AND TO EACH OF YOU
HERE TODAY.
I REALLY LOOK FORWARD TO WHAT
WILL BE A STIMULATING HERO
SESSION.
SO THANK YOU ALL VERY MUCH FOR
JOINING US.
DR. ILIAS, I'LL TURN IT BACK TO
YOU.
>> THANKS, SO MUCH, GEORGE.
SO NOW I HAVE THE HONOR TO
PRESENT THE TRUE HIGHLIGHTS OF
TODAY WHICH ARE OUR PANELISTS.
I'LL INTRODUCE EACH PANELIST
BEFORE THEY SPEAK AND AFTER ALL
THE TALKS ARE FINISHED, WE WILL
HAVE A QUESTION AND ANSWER
SESSION MODERATED BY MYSELF AND
I REALIZE I DID NOT INTRODUCE
MYSELF, MALIHA ILIAS THE AND
POST YOUR QUESTIONS AND WE'LL
POSE THEM AT THE END.
OUR FIRST SPEAKER AND AS I SPEAK
I KNOW HER SLIDES WILL POP UP
GETTING READY FOR HER TO TAKE
THE WHEEL, OUR FIRST SPEAKER AND
PANELIST IS DR. COOK, PCORI'S
EXECUTIVE DIRECTOR A
CARDIOLOGIST AND RESEARCHER WITH
A CAREER LEADING INITIATIVES
ENGAGING PATIENTS, CLINICIANS
AND OTHER HEALTH CARE
STAKEHOLDERS AT SOME OF THE
NATION'S LARGEST FUNDERS.
SHE LEADS THE RESEARCH
ENGAGEMENT, DISSEMINATION AND
IMPLEMENTATION AND RESEARCH
DEVELOPMENT WORK.
PRIOR TO HER CURRENT ROLE, SHE
SERVED AS SENIOR SCIENTIFIC
OFFICER AT THE NATIONAL HEART,
LUNG AND BLOOD INSTITUTE, NHLBI.
AT NHLBI SHE SPEARHEADED THE
IMPLEMENTATION OF THE STRATEGIC
PLAN AND PRECISION MEDICINE,
DATA SCIENCE, SICKLE CELL
DISEASE AND WOMEN'S HEALTH.
YOU HEARD ABOUT HER ROLE IN THE
FOUNDING OF CTRIS FROM
DR. MENSAH.
TODAY, DR. COOK WILL DISCUSS
PCORI THE PATIENT CENTERED
OUTCOME RESEARCH INSTITUTE
HIGHLIGHTING ITS COMMITMENT TO
ADVANCING HEALTH EQUITY THROUGH
THE MEANINGFUL ENGAGEMENT OF
PATIENTS AND COMMUNITIES IN THE
RESEARCH PROCESS.
SHE'LL SHARE LESSONS AS CAPTURED
IN THE REFRESHED ENGAGEMENT
RUBRIC THE FOUNDATIONAL
EXPECTATIONS FOR PARTNERSHIPS
AND RESEARCH AND TOUCH ON
PCORI'S FOCUS ON THE
IMPLEMENTATION AND SHARE THE
PURPOSE OF PCORI AND THE CENTER
FOR TRANSLATIONAL RESEARCH AND
IMPLEMENTATION SCIENCE.
OVER TO YOU.
>> THANK YOU FOR THAT KIND
INTRODUCTION, DR. ILIAS AS WELL
AS DR. MENSAH FOR THOSE KIND
WORDS ABOUT THE EARLY DAYS OF
CTRIS AND MY PLEASURE IN BEING
INVOLVED WITH WHAT HAS
FLOURISHED INTO THE CENTER IT IS
TODAY.
I THANK YOU FOR THE INVITATION
TO SPEAK ON THE PANEL AND GROUP
TODAY.
I'M SO PLEASED TO BE AMONGST
FORMER NHLBI COLLEAGUES AND IT'S
AN HONOR REALLY TO DELIVER ONE
OF THE HERO LECTURES.
I HAD AN OPPORTUNITY TO SEE SOME
PREVIOUS ONES AND RECOGNIZE ALL
THE INSIGHTFUL TOPICS AND
DISCUSSIONS.
IT'S WONDERFUL TO SEE CTRIS
CELEBRATING 10 YEARS.
THANK YOU AGAIN.
AS YOU HEARD FROM DR. ILIAS, IN
MY CURRENT ROLE IN PCORI A SEE A
SHARED MISSION IN HEALTH EQUITY
AND THE ENGAGEMENT OF
COMMUNITIES IN RESEARCH AND THE
SYSTEMATIC IMPLEMENTATION OF
RESEARCH RESULTS TO TRULY BE OF
VALUE TO THOSE THEY'RE INTENDED
TO BENEFIT.
MY AIM IS TO TELL YOU A LITTLE
BIT ABOUT PCORI'S WORK AND FOR
THOSE LESS FAMILIAR AND ENHANCE
YOUR KNOWLEDGE IF YOU HAVE
FAMILIARITY WITH OUR WORK, I'LL
FOCUS PRIMARILY ON THE ROLE OF
ENGAGEMENT OF PATIENTS AND
COMMUNITIES AND COMPARATIVE
CLINICAL EFFECTIVENESS RESEARCH
WITH A FOCUS ON THE PROMISE OF
ENGAGEMENT AND ADVANCING HEALTH
EQUITY AND ALSO WANT TO DESCRIBE
INSIGHTS REGARDING HOW WE 130ER9
-- SUPPORT ENGAGEMENT OVER THE
YEARS AND TOUCH ON OUR
DISSEMINATION AND IMPLEMENTATION
FOR COMMUNITIES THEY'RE INTENDED
TO BENEFIT AND FINISH WITH
THOUGHTS ON THE FUTURE OF HEALTH
RESEARCH AND WHAT WILL
FACILITATE PARTICIPATION BY ALL.
I WANT TO BEGIN BY ASKING YOU TO
IMAGINE A PATIENT.
THIS IS ONE OF MANY PEOPLE OF
COLOR WHO SUFFER FROM
DISPROPORTIONATE BURDEN OF
ASTHMA.
THIS PATIENT HAS PERIODIC ASTHMA
ATTACKS SEVERE ENOUGH TO MISS
DAYS OF WORK AND STRUGGLE TO
TAKE CARE OF HER CHILDREN AND
INTERESTED IN WHAT WILL HELP HER
ASTHMA IN HER CIRCUMSTANCES.
THIS DILEMMA FACES MILLIONS OF
PEOPLE EVERY DAY AND WHY PCORI
WAS CREATED, TO FUND THE KIND OF
RESEARCH THAT GENERATES THE KIND
OF INFORMATION THAT HELPS PEOPLE
DECIDE WHICH CARE APPROACHES ARE
BEST SUITED FOR THEM.
OUR PATIENT HAS A RELEVANT STUDY
PCORI FUNDED CALLED THE COMPARE
STUDY COMPARING TWO ASTHMA
TREATMENTS AMONG AFRICAN
AMERICAN AND HISPANIC ADULTS AND
PATIENTS BURDENED WITH ASTHMA
AND MORTALITY AND HAVE UNDER
REPRESENTATION IN MANAGEMENT
STUDIES.
NOW, THE PREPARE RESEARCH TEAM
FOUNDED THE USE OF INHALE D
CORTICOSTEROIDS AND SAW IMPROVED
QUALITY OF LIFE AND REDUCED THE
DAYS LOST OF WORK OR SCHOOL.
THE PREPARE STUDY IS AN EXAMPLE
OF HOW THE APPROACHES TO ADVANCE
HEALTH EQUITY.
THE FUNDING OF THOSE TYPES OF
POPULATION-SPECIFIC STUDIES OF
GROUPS THAT MAY CARRY A
DISPROPORTIONATE BURDEN, MUCH A
PARTICULAR CONDITION OR HEALTH
ISSUE OR THAT EXPERIENCE
SPECIFIC CIRCUMSTANCE THAT NEED
TO BE ADDRESSED TO ACHIEVE
OPTIMAL HEALTH.
PREPARE I THINK ALSO PROVIDED A
GREAT EXAMPLE OF THE INFLUENCE
OF STAKEHOLDERS AND PATIENTS
RELATED TO THIS STUDY HELPED THE
RESEARCH STUDY DESIGN A STUDY
WHOSE PRIME OUTCOMES WERE
QUALITY OF LIFE AND DAYS MISSED
FROM WORK OR SCHOOL AND THESE
WERE THE THINGS THE PATIENTS
TOLD THEM WERE IMPORTANT TO
THEM.
NOW, INPUT FROM PATIENTS ALSO
ENHANCED THE RECRUITMENT AND
RETENTION OF AFRICAN AMERICAN
AND HISPANIC STUDY POPULATIONS
WHICH WITH KNOW NEEDS ONGOING
AND ATTENTIVE APPROACHES.
I ALSO THINK THIS EXAMPLE NICELY
ILLUSTRATES PCORI'S MISSION TO
GENERATE THE EVIDENCE THAT
PATIENT AND CAREGIVERS,
CLINICIANS AND PURCHASERS AND
POLICY MAKERS HAVE TO MAKE
BETTER DECISIONS FOR INDIVIDUALS
AND POPULATIONS.
WHILE PCORI RECEIVED FUND FROM
THE GOVERNMENT THROUGH A TRUST
FUND WE'RE AN INDEPENDENT
NON-PROFIT ORGANIZATION LEADING
THE WAY FOR PATIENT-CENTERED
COMPARATIVE CLINICAL
EFFECTIVENESS RESEARCH.
WE'RE ALSO DRIVING THE RESEARCH
ENTERPRISE IN THE UNITED STATES
TO BECOME MORE PATIENT CENTERED
AND STAKEHOLDER AND
COMMUNITY-DRIVEN THROUGH THE
EMPHASIS ON ENGAGING THE HEALTH
DECISION MAKERS AS TRUE PARTNERS
THROUGHOUT THE ENTIRE RESEARCH
PROCESS.
TO MORE EXPLICITLY DEFINE
COMPARATIVE CLINICAL
EFFECTIVENESS RESEARCH IT
COMPARES TWO OR MORE HARMS TO
PREVENT, DIAGNOSE, TREAT OR
MONITOR A CONDITION OR IMPROVED
CARE DELIVERY.
CER COMES INTO PLAY FOLLOWING
THE DISCOVERY SCIENCE OR WHAT
LEADS TO A NEW PREVENTIVE OR
DIAGNOSTIC OR THERAPEUTIC
OPTION.
OUR STUDIES ARE USUALLY FOCUSSED
ON EFFICACY OR WIDESPREAD USE
ALREADY IN CLINICAL PRACTICE.
THE PCORI STUDIES ARE FOCUSSED
ON REAL WORLD POPULATIONS FOR
GENERALIZABILITY.
IT'S DIFFERENT THAN THE
POPULATIONS TYPICALLY RECRUITED
FOR EFFICACY TRIALS WHICH TEND
TO HAVE NARROWER INCLUSION AND
EXCLUSION CRITERIA.
OUR FUNDING APPROACHLESS
ANALYZES BY SUB GROUPS AND
HETEROGENEITY OF GROUPS.
I WANT TO TAKE A MOMENT AND
EMPHASIZE THERE'S A COMMITMENT
TO ENGAGING PATIENTS AND
COMMUNITIES AND THOSE WHAT CARE
FOR THEM.
WE CAN THINK OF THE ENGAGEMENT
WORK IN FOUR BROAD ACTIVITIES
YOU CAN SEE ON THE SLIDE.
I'LL GO INTO MORE DETAIL LATER
IN THE TALK BUT SOME IDEAS MAY
ALSO FIELD QUESTIONS IN THE
DISCUSSION LATER.
THE FIRST ACTIVITY IS THE
FUNDING OF ENGAGEMENT.
THIS ENTAILS SEVERAL THINGS.
FIRST AND FOREMOST IS WE REQUIRE
THE ENGAGEMENT OF PATIENTS AND
OTHER PARTNERS IN PCORI FUNDED
PROJECTS AND STUDIES.
AND THE FOUNDATIONAL
EXPECTATIONS FOR PARTNERSHIPS
FOR RESEARCH, WHICH WE'LL TALK
ABOUT SHORTLY, THERE'S ALSO AN
INCLUSION OF REQUIREMENT FOR A
SPECIFIC BUDGET FOR ENGAGEMENT
BECAUSE WE RECOGNIZE THIS HAS TO
BE FUNDED IN ORDER FOR IT TO BE
SUCCESSFUL AND MEANINGFUL.
ANOTHER WAY TO SUPPORT IS
THROUGH FUNDING PROJECT TO BUILD
CAPACITY OF PATIENTS AND
COMMUNITIES TO COLLABORATE
ACROSS THE RESEARCH CONTINUUM
THROUGH THE PCORI REWARDS
PROGRAM AND SEEK TO GROW THE
SCIENTIFIC EVIDENCE ABOUT
EFFECTIVE WAYS TO EFFECT
NON-RESEARCHER PARTNERS AND
COMMUNITIES THROUGH FORMAL
ASSESSMENT OF ENGAGEMENT
ACTIVITIES IN OUR CER STUDIES AS
WELL AS A TARGETED SCIENCE OF
ENGAGEMENT FUNDING OPPORTUNITY
AND WE ALSO FUND LEARNING
NETWORKS OF AWARDEES TO SUPPORT
THE DEVELOPMENT OF INVESTIGATORS
AND COMMUNITIES AND INDIVIDUALS
TO KNOW MORE ABOUT MEANINGFUL
ENGAGEMENT IN RESEARCH.
NOW, THE SECOND BROAD ACTIVITY
YOU'LL SEE ON THE SLIDE IS
DRIVING MEANINGFUL AND EFFECTIVE
ENGAGEMENT IN RESEARCH BEGINNING
WITH EFFORTS TO SUMMARIZE,
SYNTHESIZE ENGAGEMENT AND WE
REIMAGINED OUR ENGAGEMENT RUBRIC
AND CALL TOOLS BASED ON FEEDBACK
FROM RESEARCHERS AS WELL AS
PARTNERS.
AND THE THIRD BROAD ACTIVITY IS
ONE IN WHICH WE HOST A VARIETY
OF FORUMS THAT BRING TOGETHER
PATIENTS, CAREGIVERS, COMMUNITY
ORGANIZATIONS CLINICIANS,
RESEARCHERS AND PAYERS TO
DISCUSS THE INFORMATION NEEDS,
EVIDENCE GAPS AND RESEARCH
PRIORITIES.
AND FOURTH IN THE LIST OF
ACTIVITIES WE DON'T JUST REQUIRE
OUR AWARDEES TO ENGAGE, WE DO IT
OURSELVES.
FOR EXAMPLE IN DEVELOPING OUR
NATIONAL PRIORITIES FOR HELP WE
BROUGHT TOGETHER PATIENTS,
FAMILIES, PURCHASERS, PAYERS,
RESEARCHERS, REPRESENTATIVES OF
HOSPITALS AND HEALTH SYSTEMS AND
DOZENS OF COMMUNITY FORUMS AND
WORKSHOPS.
THIS SLIDE MAY BE FAMILIAR TO
SOME BUT CAPTURES OUR MODEL FOR
MEANINGFUL AND ACTIVE ENGAGEMENT
IN ALL STAKEHOLDERS IN THE
HEALTH CARE ENTERPRISE AT EVERY
STAGE OF THE PROCESS.
THIS IS THE HEART OF OUR TAGLINE
YOU MAY HAVE HEARD, RESEARCH
DONE DIFFERENTLY.
PATIENTS AND OTHERS ARE INVOLVED
IN EVERY STAGE IN COMMUNITY
IDENTIFICATION OF THE AREAS OF
FOCUS FOUNDING FOR RESEARCH, THE
PLANNING OF STUDIES AND
DESIGNING THE RESEARCH
QUESTIONS, REVIEWING
APPLICATIONS FOR FUNDING AND
CONDUCTING STUDIES AS WELL AS
PARTICIPATING IN RESEARCH.
PARTICIPATING IN THE PEER-REVIEW
AND WHEN THE STUDY IS COMPLETE
HELPING DISSEMINATE RESULTS.
AT THE BOTTOM YOU CAN SEE FOUR
OVERARCHING PRINCIPLES
ARTICULATED THERE THAT GROUND
OUR APPROACH TO ENGAGEMENT.
IT'S INCLUSION, EQUITABLE
PARTNERSHIPS, TRUST AND
TRUSTWORTHINESS AND
ACCOUNTABILITY AND
ACTIONABILITY.
WE'LL TALK ABOUT THOSE A LITTLE
BIT MORE.
WE'VE LEARNED QUITE A GREAT DEAL
FROM OUR PATIENT AND COMMUNITIES
THAT HAVE BEEN ENGAGED IN PCORI
EFFORTS IN THE PAST DECADE OR
MORE AND RECOGNIZE THE POWER OF
ENGAGEMENT HELPS WITH THE
NATIONAL PRIORITY FOR HEALTH
AROUND ADVANCING HEALTH EQUITY.
WHILE ENGAGEMENT IS A COMPLEX
ACTIVITY, WE RECOGNIZE THAT NO
TWO POPULATIONS OR RELATIONSHIPS
ARE EXACTLY THE SAME.
YET WE CAN STILL SUMMARIZE
LESSONS LEARNED.
WE HAVE LEARNED ENGAGEMENT HELPS
TO FACILITATE RECRUITMENT AND
RETENTION OVER ALL BUT ALSO THAT
PEOPLE ARE MORE LIKELY TO
PARTICIPATE IN RESEARCH AS THEY
FEEL CONNECTED AND FEEL WELCOME
AND ENGAGEMENT GOES A LONG WAY
TOWARDS THOSE SENTIMENTS.
IT'S NEVER TOO LATE TO START
ENGAGING PATIENTS, COMMUNITIES
AND STAKEHOLDERS.
WE WANT TO ALL DO IT AT THE
BEGINNING, IT'S IMPORTANT TO
RECOGNIZE IF YOU HAVEN'T YET
DONE IT, IT'S NOT TOO LATE TO
GET STARTED BECAUSE IT WILL HELP
FACILITATE WHAT COMES NEXT.
TRUSTWORTHINESS AND TRUST ARE
ESSENTIAL FOR EFFECTIVE
PARTNERSHIPS.
THAT'S A LESSON WE LEARNED EARLY
ON AND THAT THOSE HAVE TO BE
EARNED THROUGH THE EFFORTS OF
MEANINGFUL ENGAGEMENT AND TRUST
CAN ALSO BE A MAJOR COMPONENT OF
LOW RECRUITMENT OR ENROLLMENT OF
UNDER SERVED PARTICIPANTS.
WE'VE LEARNED THAT EARLY IN OUR
WORK AND CONTINUES TO TEACH US
LESSONS EVERY DAY.
WE'VE ALSO LEARNED UNDER SERVED
POPULATIONS IN CLINICAL TRIALS
HAS COMPLEX ISSUES.
ENGAGEMENT HAS TAUGHT US IT'S
BEST TO MEET PEOPLE WHERE THEY
ARE.
WE HAVE TO MEET POPULATIONS IN
THEIR COMMUNITIES AND UTILIZE
THE EXPERTISE OF TRUSTED
COMMUNITY BROKERS TO UNDERSTAND
THE RIGHT APPROACHES AND BEST
WAYS TO ENGAGE COMMUNITIES IN
THE RESEARCH BEING UNDERTAKEN.
AS I MENTIONED WE TRIED TO
CAPTURE A LOT OF THESE LESSONED
WE LEARNED ABOUT ENGAGEMENT AS
WELL AS THE CONCEPT FROM A
GROWING BODY OF LITERATURE AND
THE RUBRIC THAT LAY THE GROUND
WORK FOR EQUITABLE PARTNERSHIPS
AND PROVIDES GUIDANCE HOW TO
ENGAGE RESEARCH PARTICIPANTS AND
PARTNERS IN EVERY PHASE OF THE
RESEARCH STUDY.
SO I'M PLEASED TO SHARE WITH YOU
THIS RECENTLY RE-IMAGINED
ITERATION OF OUR ENGAGEMENT
RUBRIC AND KNOWN AS THE
FOUNDATIONAL EXPECTATIONS FOR
PARTNERSHIPS IN RESEARCH.
IT INCLUDES THE SIX BUILDING
BLOCKS YOU SEE ON THE SLIDE.
I'M GOING TO HIGHLIGHT THREE
WHICH REPRESENT A SIGNIFICANT
CHANGE IN UPDATE FROM OUR
EARLIER RUBRIC.
ONE IS STUDY PROPOSALS NEED TO
INCLUDE A BUDGETS AND HAVE TO
COMPENSATE PARTNERS WHO GIVE OF
THEIR TIME AND EXPERTISE FOR THE
DESIGN OF STUDIES AND CONTEXT OF
STUDIES.
RESEARCH TEAMS NEED TO ENGAGE
EVEN EARLIER WITH THE
COMMUNITIES IN WHICH THEY'LL BE
WORKING.
I MENTIONED ONE LESSON WE
LEARNED IS IT'S NEVER TOO LATE
TO ENGAGE PATIENTS AND
COMMUNITIES BUT ENGAGING EVEN
EARLIER IS HIGHLY BENEFICIAL AND
WE'RE NOW REQUIRING THEY NEED TO
DO SO.
THEY'LL NEED TO DESCRIBE THIS
ENGAGEMENT IN THEIR APPLICATIONS
AND DETAIL HOW RESEARCH PARTNERS
WILL CONTRIBUTE AS WELL AS SHARE
IN THE LEADERSHIP OF THE STUDY.
AND THERE'S NOW AN EXPECTATION
OF A FORMAL ASSESSMENT OF
ENGAGEMENT IN THE STUDY AND
WE'VE LEARNED A GREAT DEAL ABOUT
ENGAGEMENT BUT SO MUCH MORE WE
NEED TO LEARN TO TAKE IT TO THE
NEXT LEVEL AND BUILD THE
EVIDENCE BASE TO GUIDE
ACTIVITIES IN THE FUTURE.
IT WILL ADDRESS TO THE EVIDENCE
BASE AND WE ALSO RECOGNIZE OUR
SCIENCE OF OWN GAUGEMENT WHICH I
ED EARLIER WILL PROVIDE A LOT OF
INSIGHTS FOR US TO AGGREGATE
ACROSS THE ACTIVITIES THAT WE
FUND AND CONDUCT.
NOW, OVER ALL WE ANTICIPATE THE
FOUNDATIONAL EXPECTATIONS IS TO
ENGAGE COMMUNITIES AND FOSTER A
MORE INCLUSIVE RESEARCH CULTURE
WHICH IN TURN WILL HELP ADVANCE
THE ROLE OF HEALTH EQUITY.
SO I JUST WANT TO MAKE THIS A
LITTLE BIT MORE CONCRETE.
AND I WANT TO SHARE AN EXAMPLE
OF THE POWER MUCH ENGAGEMENT IN
DEFINING A STUDY TO REFLECT THE
NEEDS OF A STUDY.
THIS IS WHERE THE RESEARCH TEAM
SEEKS TO ADDRESS THE SIGNIFICANT
DISPARITY AND MORTALITY RATES
AMONGST BLACKS AND WHITES IN THE
UNITED STATES AND BLACK AND
WHITE BIRTHING PEOPLE FOR
PREGNANCY.
AS YOU KNOW, THAT DISPARITY IS
THREE TIMES HIGHER FOR BLACK
WOMEN AS COMPARED TO WHITE
COUNTERPARTS IN NEARLY HALF THE
DEATHS RELATED TO MATERNAL
MORTALITY ARE DUE TO HEART
DISEASE.
THIS IS BEING CO-LED BY AN
ACADEMIC RESEARCHER AND A
PROVIDER WHO EXPERIENCES HEART
PROBLEMS DURING PREGNANCY AND
THE STUDY IS BEING CONDUCTED IN
A HOSPITAL IN PHILADELPHIA THE
LARGEST SAFETY NET HOSPITAL
PROVIDER IN PENNSYLVANIA.
WHERE ABOUT HALF THE PATIENTS
ARE BLACK AND 90% ARE LOW
ECONOMIC.
IT LOOKS AT WAYS TO IMPROVE
HEART HEALTH FOR BLACK PEOPLE
NOT ONLY ADDRESSING DIET AND
BLOOD PRESSURE AND OTHER FACTORS
THAT HAVE BEEN SHOWN TO CAUSE
POOR CARDIAC OUTCOMES, INCLUDING
LONELINESS AND STRESS FOR BLACK
WOMEN AND IT'S A PROGRAM CALLED
CHANGE OF HEART INCLUDING
TAILORED FEEDBACK OF NUTRITION
AND FEEDBACK AND REMOTE
MONITORING OF BLOOD PRESSURE AND
STAFF WITH EXPERIENCE IN RACISM
AND BIAS.
PEOPLE IN THE OTHER ARM WILL
RECEIVE THE HEART INVENTION AND
COMMUNITY PROVIDERS WITH LIVED
EXPERIENCE SUCH AS DOULAS AND
SUPPORT AND MENTAL HEALTH
SCREENINGS.
THIS WAS DESIGN TO DETERMINE
WHETHER IT HELPS TREAT SOCIAL
ISOLATION AND TREAT BLOOD
PRESSURE AND RESPECTFUL
MATERNITY CARE.
NOW, I HIGHLIGHT THE STUDY
BECAUSE IT'S SOME OF THE
INTERESTING WORK THAT WAS DONE
AS PART OF THE STUDY DESIGN WAS
TAKING SHAPE THAT ILLUSTRATES
THAT POWER AND IMPORTANCE OF THE
EARLY AND INTENTIONAL ENGAGEMENT
IN MAKING SURE THE STUDIES WE
FUND REFLECT THE NEEDS OF
PATIENTS AND OTHERS IN THE
COMMUNITY.
NOW, IN THIS STUDY THE RESEARCH
TEAM TOOK A SERIES OF STEPS
INCLUDING FOCUS GROUPS AMONGST
PHYSICIANS, NURSES, MIDWIVES AND
OTHER HOSPITAL STAFF.
FOCUS GROUPS OF PATIENTS AS WELL
AS COMMUNITY-BASED PERINATAL
SUPPORT PROFESSIONALS.
A THEMATIC ANALYSIS OF THE INPUT
REVEALED THERE WERE FOUR MAJOR
THEMES.
TRAUMA IN THE COMMUNITY AND
HEALTH SYSTEM, LACK OF TRUST, A
DESIRE TO BE HEARD AND VALUED
AND HOPE AND ENTHUSIASM.
AND THESE WERE THE FINDINGS THAT
HELPED THE TEAM ADAPT THEIR
STUDY TO ADDRESS WHAT THEY
IDENTIFIED WAS THE PERVASIVE
INFLUENCE OF TRAUMA.
THE RECOGNITION LED THE TEAM TO
PROVIDE TRAUMA AND INFORMED CARE
TO GUIDE THE INTERACTIONS AND
EXPAND THE WAY PATIENTS COULD
ASK FOR ADDITIONAL SUPPORT
THROUGHOUT THE TRIAL.
TEAM USED THIS TO RECRUIT
PATIENTS FOR THE STUDY.
THESE ARE POWERFUL LISTENING
EXAMPLES REPRESENTED BY THE
FOCUS GROUPS ARE THE ESSENCE OF
EFFECTIVE AND MEANINGFUL
ENGAGEMENT.
SO I WANT TO TALK ABOUT SOME OF
THE CHALLENGES AS WELL RELATED
TO ENGAGEMENT BECAUSE WE
RECOGNIZE IT'S NOT EASY.
NOW, EFFECTIVE ENGAGEMENT AS I
ED CAN CERTAINLY BE WITH
CHALLENGES.
THERE'S NO ONE SIZE FITS ALL
MODEL.
THOUGH WE HAVE A RUBRIC AND
FOUNDATIONAL EXPECTATIONS,
CIRCUMSTANCES VARY FROM STUDY TO
STUDY AND THERE'S ALMOST AN
INFINITE NUMBER OF VARIABLES TO
ACCOUNT FOR.
WE HAVE IDENTIFIED A FEW COMMON
CHALLENGES ACROSS MANY OF OUR
STUDIES AND ONE RELATES TO
INFRASTRUCTURE AND RESOURCES AND
INCLUDES THE NEED FOR READILY
AVAILABLE TRAININGS FUNDING AND
STAFF RESOURCES TO DO EFFECTIVE
ENGAGEMENT AND MONEY TO
COMPENSATE PARTNERS.
TIME IS ALWAYS A CHALLENGE FOR
EVERYONE.
PEOPLE LEAD VERY COMPLEX AND
BUSY LIVES AND HAVE FAMILY
RESPONSIBILITIES AND OTHER
DEMANDS ON THEIR TIME SO IT HAS
TO BE ACCOUNTED FOR AS WE THINK
ABOUT ENGAGEMENT OPPORTUNITIES.
REGARDING PEOPLE IN TEAMS, WE
HAVE LEARNED THAT CONDUCTING
ENGAGED RESEARCH IS A
MULTI-STAKEHOLDER ENTERPRISE AND
INVOLVES COMMUNITIES, PATIENTS
AND TRAINED RESEARCHERS WHO ALL
HAVE DIFFERENT PERSPECTIVES AND
INTERESTS.
AND ONE OF THE MAJOR CHALLENGES
IN RECRUITING PARTICIPANTS IS
THAT WE STRIVE IN THE STUDIES WE
FUND PARTICIPANTS TRULY
REPRESENT THE DIVERSITY OF THE
INDIVIDUALS WITH CONDITIONS OR
CIRCUMSTANCES OF STUDY.
SO THE ENGAGEMENT OPPORTUNITIES
MAY HELP OVERCOME SOME
CHALLENGES THAT GET TO THE
PARTICIPANTS THAT REPRESENT THE
DIVERSITY OF INDIVIDUALS WITH
CERTAIN CONDITIONS.
THERE COULD ALSO BE
ORGANIZATIONAL BARRIERS THOUGH.
WE SEE THIS IN A LOT OF THE
P.I.s WHO REPORT TO US THAT SOME
IRBs FOR EXAMPLE HAVE NOT ALWAYS
UNDERSTOOD HOW AN ENGAGED
PATIENT OR COMMUNITY OR OTHER
STAKEHOLDER IS FUNDAMENTALLY
DIFFERENT THAN THOSE
PARTICIPANTS IN THE RESEARCH
STUDY.
AND WE ALSO HEAR ABOUT
CHALLENGES AND BALANCING VIEWS
AND PRIORITIES.
THIS IS PERHAPS ONE OF THE
GREATEST CHALLENGES.
WE THINK OF RANDOMIZED CONTROL
TRIALS AS A GOLD STANDARD IN
CLINICAL RESEARCH AND THEY CAN
BE VIEWED AS UNJUST OR UNFAIR BY
SOME PATIENTS AND COMMUNITY
MEMBERS AND THEY MAY BE WILLING
TO PARTICIPATE OR RESIGNED ABOUT
PARTICIPATING IN SUCH PROJECT.
HEARING AND AND TALKING THROUGH
STUDY DESIGN IS AN IMPORTANT
COMPONENT OF ENGAGEMENT.
BUT WE ALSO RECOGNIZE THAT USING
PRIORITIES EVEN AMONG CLINICIANS
CAN BE DIFFERENT AS WELL AS WE
THINK ABOUT DIFFERENT TYPES OF
TREATMENT WHICH SOMETIMES THE
QUESTIONS ARISE ABOUT WHAT
REPRESENTS EQUIPOISE WHEN WE
THINK OF COMPARATIVE
INTERVENTIONS IN CER.
IN REALITY, CONDUCTING EFFECTIVE
MEANINGFUL ENGAGEMENT HAS MANY
CHALLENGES FAR BEYOND WHAT I CAN
VURMZ IN THE SLIDE BUT --
ETHICAL REVIEWS AND ASSURANCES
ARE PROMINENT THINGS WE HEAR
ABOUT AND ENGAGEMENT CAN BE
DISRUPTIVE SO IT REQUIRES
PATIENTS AND FLEXIBILITY.
BUT WE FUNDAMENTALLY BELIEVE THE
BENEFIT IS WORTH IT.
SO WE HAVE TAKEN AN APPROACH TO
RESOURCES RESOURCES AND TOOLS
AND SUPPORTS ARE THE OVERCOMING
THE CHALLENGES KNOWING IT'S
IMPORTANT TO BUY INTO THE
ENGAGEMENT NECESSARY FOR THE
COMMUNITY AND PATIENT-CENTERED
RESEARCH WE FEEL BENEFITS THOSE
WE SERVE.
SOME RESOURCES MAY BE OF
INTEREST TO YOU AS YOU THINK
ABOUT THE TYPES OF THINGS THAT
YOU MAY WANT TO PARTICIPATE IN.
SOME RESOURCES ARE AVAILABLE ON
OUR WEBSITE INCLUDING A RESEARCH
FUNDAMENTALS COURSE WHICH IS
TRYING TO HELP FAMILIARIZE THE
NON-RESEARCHERS WITH RESEARCH
PRINCIPLES TO BE FULL AND EQUAL
PARTNERS IN THE RESEARCH,
DESIGN, STUDY AND OTHER ASPECTS.
WE'VE ALSO CREATED MODULES ON
BUILDING EFFECTIVE
MULTI-STAKEHOLDER RESEARCH
TEAMS.
THIS IS TO HELP RESEARCHERS AND
NON-RESEARCHERS TO WORK TOGETHER
EFFECTIVELY AND WE'VE CREATED A
SEARCHABLE REPOSITORY OF TOOLS
AND RESOURCES FROM THOSE WHO
HAVE BEEN FUNDED BY PCORI AND
USED THESE TYPES OF RESOURCES
AND TOOLS IN THEIR PROJECTS THAT
NOW ARE AVAILABLE IN REPOSITORY
FOR OTHERS TO POTENTIALLY USE.
YOU CAN FIND ALL THESE AS I
MENTIONED ON THE WEBSITE UNDER
ENGAGEMENT RESOURCES.
I HOPE YOU HEARD A BIT ABOUT THE
EXTEND TO WHICH ACHIEVING HEALTH
EQUITY IS WOVEN THROUGH ALMOST
EVERYTHING WE DO AT PCORI.
I DID WANT TO NOTE THAT
ACHIEVING HEALTH EQUITY IS ONE
OF OUR FIVE NATIONAL PRIORITIES
FOR HEALTH.
I MENTIONED IT BRIEFLY BUT I
WANTED TO HIGHLIGHT A COUPLE
SPECIFIC INITIATIVES WE HAVE
UNDERWAY IN THE SERVICE AND NOW
WE THINK ABOUT IT AS A GOAL BUT
NOW WE ALSO THINK ABOUT IT AS
FUNDAMENTALLY INTEGRATED INTO
ALL THE OTHER NATIONAL
PRIORITIES FOR HEALTH.
AS YOU SEE HERE ON THE RIGHT, WE
RECENTLY FUNDED A SUPPLEMENTAL
FUNDING OPPORTUNITY WHERE WE'RE
FOCUSSED ON HOW WE MIGHT BE ABLE
TO FUND ELIGIBLE PROJECTS TO
INCREASE THEIR DIVERSITY AND
REPRESENTATIVENESS OF STUDY
POPULATIONS IN THE CER STUDIES
THEY WERE CONDUCTED AS WELL AS
EXPAND THE ABILITY TO CONDUCT
HETEROGENEITY ANALYSES IN THE
CONTEXT OF THE CONDITIONS AND
INTERVENTION OF THE STUDY.
WE ALSO RECENTLY FUNDED ANOTHER
INITIATIVE WE CALL THE PARTNER
FUNDING INITIATIVE WHICH AIMS TO
ENHANCE THE PARTICIPATION OF
COMMUNITY ORGANIZATIONS IN
RESEARCH BY POSITIONING THEM AS
FULL AND EQUAL PARTNERS ALONG
SIDE RESEARCH ORGANIZATIONS AS
CO-LEADERS IN THE RESEARCH
THEY'RE UNDERTAKING.
THIS IS SIMILAR TO A MODEL THAT
YOU HEARD ABOUT IN THE STUDY
RELATED TO BLACK BIRTHING PEOPLE
I MENTIONED NOT ALONG AGO AND
ONE OF THE BUILDING BLOCKS OF
OUR FOUNDATIONAL EXPECTATIONS
FOR RESEARCH.
AND IT FOCUSSED ON INTERVENTIONS
ADDRESSING HEALTH CONDITIONS AS
WELL AS SOCIAL DETERMINATES OF
HEALTH TO IMPROVE MATERNAL
OUTCOMES AND MADE THE FOUR
AYEARS UNDER THE PARTNER FUNDING
AND $80 MILLION TOTAL.
IT'S A SIGNIFICANT INVESTMENT TO
ENROLL 100,000 PREGNANT OR
POSTPARTUM PEOPLE AND COVER A
WIDE ARRAY OF SETTINGS AND
INTERVENTIONS AND SEE THE FOUR
STUDIES WILL INVOLVE DOZENS OF
COMMUNITY OHS AND SEE THEM AS
POTENTIAL TO HAVE A YIELD OF
R6R7 AND -- OF RESEARCH TO HELP
REDUCE INEQUITIES AND REDUCE
MATERNAL MORBIDITY AND
MORTALITY.
SO WE'RE EXCITED ABOUT THIS
PROGRAM.
I WANTED TO TOUCH A LITTLE BIT
ON A FOUNDATIONAL ELEMENT ON
PCORI'S RESEARCH.
AND THIS IS A SHARED PURPOSE
THAT CLEARLY DEMONSTRATED A
PURPOSE WITH CTRIS' MISSION, THE
FOCUS ON DISSEMINATION AND
IMPLEMENTATION OF THE RESEARCH
RESULTS AND FINDINGS FROM
PCORI-FUNDED CER.
NOW THE OFFICE HAS FUNDING
OPPORTUNITIES FOR PROJECTS THAT
AIM TO IMPLEMENT THE RESULTS OF
THEIR STUDIES INTO CLINICAL
PRACTICE AS WELL AS SOME
PROJECTS FOCUSSED ON
DISSEMINATION ALONE OF THE
RESULTS IN TERMS OF SPREADING
KNOWLEDGE AND AWARENESS OF
RESULTS TO THOSE THAT MAY BE
MOST ABLE TO BENEFIT.
NOW, THE STUDY I MENTIONED IN
THE BEGINNING RELATED TO OUR
ASTHMA PATIENT THINKING BACK A
FEW MINUTES WAS ALSO ONE OF
THOSE STUDIES AWARDED FUNDING
FOR AN IMPLEMENTATION PROJECT.
AND YOU MAY RECALL THE STUDY
FOUND A TREATMENT APPROACH THAT
WAS AROUND PATIENT ACTIVATED
RELIEVER TRIGGERED
CORTICOSTEROIDS LED TO FEWER
MISSED DAYS OF WORK AND SCHOOL.
THE IMPLEMENTATION PROJECT IS
TAKING THAT APPROACH AND PUTTING
IT INTO REGULAR CARE AT HOSPITAL
SYSTEMS IN FOUR STATES THAT
SERVE UNDER REPRESENTED
COMMUNITIES.
NOW, THREE OF THESE SYSTEMS
PRIMARILY SERVE BLACK AND
HISPANIC PATIENTS AND THOSE
WITHOUT HEALTH INSURANCE.
THE TEAM IS WORKING WITH
CLINICIAN CHAMPIONS AT EACH SITE
PROMOTING AWARENESS MUCH THIS
PARTICULAR APPROACH THROUGH
INTERNAL COMMUNICATIONS AND
SELF-TEACHING MATERIALS AND
ADAPTING ELECTRONIC HEALTH
RECORD TO IDENTIFY PATIENTS AND
ALERT CLINICIANS THAT MAY
BENEFIT FROM THIS INTERVENTION.
MORE THAN 1600 CLINICIANS ARE
LEARNING ABOUT THE RESULTS OF
THIS CER STUDY THROUGH THE
IMPLEMENTATION PROJECT AND
NEARLY 15,000 PATIENTS WITH
ASTHMA WILL RECEIVE THIS
INTERVENTION.
WE ALSO HAVE A PROJECT
EVALUATION FUNDED AS PART OF
THIS PROJECT ASSESSING THE
OUTCOMES THAT INCLUDE THE
PROPORTION OF PATIENTS
PRESCRIBED THIS INTERVENTION AND
RATES OF ASTHMA EXACERBATION AND
VISITS TO HOSPITALIZATION AND
HOPES THIS SHOWS THE WAY WE TRY
TO TAKE THE RESULTS AND TRY TO
CROSS THE FINISH LINE WITH THEM
IN GETTING RESULTS TO THOSE THAT
BENEFIT.
ANOTHER EXAMPLE OF A DIFFERENT
TYPE OF IMPLEMENTATION
INITIATIVE WE ALSO HAVE TAKEN ON
AT PCORI AND WE'RE EXCITED ABOUT
AS WELL IS THE HEALTH SYSTEMS
IMPLEMENTATION INITIATIVE.
THIS IS DESIGN TO LEVERAGE THE
ABILITY OF HEALTH SYSTEMS TO
HAVE IMPROVEMENTS OF CARE BASED
ON THEIR INTIMATE KNOWLEDGE OF
THEIR COMMUNITIES AND WORK
FLOWS.
I'M NOT GOING INTO GREAT DETAIL
BUT HAPPY TO DISCUSS IT LATER IN
THE SESSION IF WE HAVE TIME BUT
THIS IS POTENTIALLY
GROUNDBREAKING INITIATIVE WHERE
THERE'S 40 HEALTH SYSTEMS THAT
REPRESENT ABOUT 80 MILLION
UNIQUE PATIENTS PARTICIPATING
AND TOTAL ABOUT $50 MILLION
WORTH OF FUNDING SO THUS FAR.
THESE SYSTEMS REPRESENT A GREAT
DIVERSITY IN THE COUNTRY.
AND MANY SERVING HISTORICALLY
MARGINALIZED GROUPS AND THOSE AT
FEDERALLY QUALIFIED SYSTEMS AND
OTHER SYSTEMS THAT EXPERIENCED
SERVING THOSE PATIENTS AND
COMMUNITIES.
AND IN A FEW WEEKS WE'LL
IMPLEMENT EVIDENCE FROM PCORI
FUNDED STUDIES.
THOSE ON LIFESTYLE TREATMENT FOR
WEIGHT LOSS IN PRIMARY CARE
SETTINGS AND ANTIBIOTIC
STEWARDSHIP.
WE'RE EXCITED FOR THOSE
IMPLEMENTATION PROJECTS TO GET
STARTED.
THE LAST COUPLE OF MINUTES WE
HAVE TODAY I WANTED TO BRING
TOGETHER SOME OF THE MAIN
THREADS OF THE TALK WITH A BROAD
VISION FOR THE TEMPERATURE OF
HEALTH RESEARCH THAT I THINK CAN
ACCELERATE THE ADVANCEMENT OF
HEALTH EQUITY THROUGH PATIENT
AND COMMUNITY ENGAGEMENT THAT
DRIVES A CYCLE YOU SEE.
THE ENGAGEMENT CAN HELP ASK THE
RESEARCH QUESTIONS RELEVANT TO
PATIENTS AND COMMUNITIES.
AND WE CAN ALSO LEVERAGE A LOT
OF TECHNOLOGICAL ADVANCES SUCH
AS TRANSFORMATIONS AND DIGITAL
HEALTH, WHICH ARE BRINGING
MOBILE HEALTH AND HEALTH
INFORMATION TECHNOLOGY AND
ELECTRONIC HEALTH RECORDS TO
BEAR FOR RESEARCH THAT CAN
ENHANCE OUR ABILITY TO CONDUCT
THE CLINICAL RESEARCH IN REAL
WORLD SETTINGS MORE INTEGRATED
INTO CLINICAL CARE.
THE MEANINGFUL ENGAGEMENT CAN
ALSO HELP FACILITATE RECRUIT,
AND RETENTION AND CLINICAL
TRIALS OF POPULATIONS
HISTORICALLY UNDER REPRESENTED
IN RESEARCH AND ENHANCE THE
GENERALIZABILITY OF RESEARCH
RESULTS AND LIKELIHOOD OF THEIR
UPTAKE AND IMPLEMENTATION INTO
PRACTICE.
IN THE LONG TERM THIS CYCLE
UNDERGIRDED WITH PATIENT
ENGAGEMENT CAN SUSTAIN
RELATIONSHIPS WITH COMMUNITIES
AND PATIENTS AND THE TRUST FROM
THOSE COMMUNITIES WHICH
PERPETUATES THE CYCLE OF
FACILITATING BETTER HEALTH
OUTCOMES FOR ALL.
HOPEFULLY THIS VISION SEEMS LIKE
A GOOD PLACE TO END MY REMARKS
TODAY AND I WANT TO GET TO THE
LAST SLIDE AS I THANK YOU FOR
ALL OF YOUR KIND ATTENTION
BECAUSE I HOPE THAT I'VE PLANTED
A FEW SEEDS THAT WE CAN EXPLORE
FURTHER IN THE Q&A SESSION BUT I
ALSO WANT TO MENTION FEEL FREE
TO ALSO JOIN US IN OUR ANNUAL
MEETING LATER IN OCTOBER WHERE
YOU CAN ALSO HAVE THE
OPPORTUNITY TO ENGAGE WITH US
AND THOSE WE SUPPORT.
THANK YOU FOR THE OPPORTUNITY TO
BE WITH YOU AND I'LL TURN IT
BACK TO YOU, DR. ILIAS.
>> THANK YOU, SO MUCH, DR. COOK
FOR THAT EXCELLENT PRESENTATION
OF PCORI'S ENGAGEMENT VISION AND
STRATEGIES.
YOU'VE HELPED US KICK OFF AN
EXCELLENT PANEL.
SO DR. COOK WILL BE FOLLOWED BY
DR. LIZ COHN.
MY COLLEAGUE WILL PULL UP HER
SLIDES.
SHE'S THE VICE PRESIDENT FOR
HEALTH EQUITY RESEARCH, SAUL
KATZ CHAIR IN WOMEN'S HEALTH
RESEARCH PROFESSOR AND FROM THE
INSTITUTE OF HEALTH SYSTEMS
SCIENCE FEINSTEIN INSTITUTES OF
MEDICAL RESEARCH ZUCKER SCHOOL
OF MEDICINE AND AN INTERNATIONAL
NURSE SCIENTIST WITH RECOGNITION
IN HEALTH EQUITY, PRECISION
MEDICINE AND COMMUNITY-ENGAGED
RESEARCH AND BEGAN HER CAREER
WORKING AT NORTHSHORE UNIVERSITY
HOSPITAL IN EMERGENCY AND
CRITICAL CARE FOR MORE THAN 25
YEARS AND NAMED THE OBAMA WHITE
HOUSE CHAMPION OF CHANGE IN
PRECISION MEDICINE AND HEALTH
EQUITY AND TODAY DR. COHN WILL
TALK ABOUT THE SOON TO BE
RELEASED THIRD EDITION THEIR
TEXT ON THE PRINCIPLES OF
COMMUNITY ENGAGEMENT.
DR. COHN, OVER TO YOU.
>> THANK YOU SO MUCH AND THANK
YOU DR. ELIAS FOR THE KIND
INTRODUCTION AND DR. COOK FOR
THE WORK YOU DO AT PCORI.
WE'RE SO VERY GRATEFUL FOR ALL
OF THAT.
I'M ELIZABETH COHN THE VICE
PRESIDENT FOR HEALTH EQUITY
RESEARCH IN THE IRIS AND SAHL
KATZ CHAIR FOR WOMEN'S HEALTH
RESEARCH IN NEW YORK AND PROUD
TO BE PART OF THE PANEL AND
PRESENTATION ALONGSIDE MY FELLOW
SPEAKER.
I'VE HAD THE HONOR OF LEADING
THE REVISION OF THE PRINCIPLES
OF COMMUNITY ENGAGEMENT WITH 200
COMMUNITY MEMBERS AND ACADEMIC
EXPERTS.
SO WE'VE JUST FINISHED REVIVING
THE SEMINOLE TEXT.
THE TEXT ED BY THE CENTERS FOR
DISEASE CONTROL AND PREVENTION
AND THE AGENCY FOR TOXIC
REGISTRY AND THE NIH, THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES AND IT REALLY GUIDES
COMMUNITY ENGAGED RESEARCH AND
COMMUNITY-ENGAGED WORK REALLY
LIFTING UP WHAT DR. COOK JUST
PRESENTED FROM PCORI AND OTHERS.
I'LL TAKE YOU BRIEFLY OVER THE
LAST FOUR YEARS FROM TIME LINE
TO FINISH LINE WITH A BRIEF
HISTORY OF THE WORK DONE AND
THEN TALK ABOUT SOME OF THE
CHANGES THAT WE'VE MADE IN THIS
BOOK.
IT'S REVISED EACH DECADE SO THIS
IS THE THIRD EDITION, 30th YEAR.
SO ACTUALLY COMMUNITY ENGAGEMENT
OVER ALL HAS ITS ROOTS IN
ACTIVISM.
I WANT TO MENTION THIS RISES UP
FROM AN EQUITY LENS AND ALWAYS
HAS.
THIS PARTICULAR BOOKS WAS A
FALLOUT FROM THE KEY FUNCTION
COMMITTEE OF THE CLINICAL AND
AWARD AT THE NATIONAL CENTER FOR
ADVANCING TRANSLATIONAL SCIENCE
WHO IN 1996 PICKED UP THE
PRINCIPLES OF COMMUNITY
ENGAGEMENT FROM THE FIRST
EDITION FROM THE CBC AND
EXPANDED IT.
OVER THE LAST THREE DECADES WE
HAVE EXPANDED IT FURTHER IN
RECOGNITION OF THE IMPORTANCE
THAT THE COMMUNITY INVOLVEMENT
PLAYS IN THE ESSENTIAL ROLE TO
IDENTIFY HEALTH CONCERNS AND
INTERVENTIONS.
SO WE BUILD THIS UPON THE
INITIAL WORK OF THE CDC AND THE
EXPANDED WORK OF THE KEY
FUNCTION COMMITTEES FROM NCATS
AND NOW IT BECOMES A WORK THAT'S
INTERDEPARTMENTMENTAL AGENCIES
ACROSS THE FEDERAL GOVERNMENT
AND 200 ACADEMIC AND COMMUNITY
PARTNERS.
BECAUSE OF THIS INTERAGENCY
SUPPORT WE HAVE SECRETARY BERERA
WRITE THE FORWARD AND TO MAKE
SURE IT'S SEEDED ACROSS ALL THE
AGENCIES.
I WILL SAY EVERYONE WHO WORKED
ON THIS 2024 EDITION DID SO AS A
VOLUNTEER.
THE PUBLICATION IS IN THE PUBLIC
DOMAIN AND IT IS AVAILABLE FOR
FREE FOR DOWNLOAD AND CAN BE
USED IN COPY WITHOUT PERMISSION.
JUST A LITTLE BIT OF ESTIMATED
PAGE VIEWS AND DOWNLOADS.
WE VIEW THIS AND THE NON-ENGLISH
TRANSLATION.
IT'S AVAILABLE IN ENGLISH AND
SPANISH.
IT'S USED ACROSS 50 COUNTRIES.
HERE'S THE TOP 150.
IT'S MOSTLY USED IN THE UNITED
STATES BUT WE SEE USE ACROSS
GLOBALLY AND THE REMAINING 40.
WOE GET A FEEL FOR THE FACT THAT
BOTH CHAPTERS AND THE BOOK
ITSELF GETS DOWN YESTERDAYED
GLOBALLY TO BE GUIDED BY SOME
PRINCIPLES.
I WILL SAY THE BOOK IS DESIGN SO
CHAPTERS AND TOOLS WITHIN THE
CHAPTER AND THE CHAPTER ITSELF
DOWNLOAD INDIVIDUALLY SO YOU
DON'T HAVE TO DOWNLOAD THE WHOLE
BOOK.
THAT'S IN RECOGNITION THAT
LOW-RESOURCE COUNTRIES MAY NOT
BE ABLE TO DOWNLOAD THE WHOLE
BOCK AT ONCE OR MAY WANT A
SINGLE CHAPTER.
WE DID MAKE EACH CHAPTER STAND
ALONE.
WE STARTED IN 2020 WITH THE
ORIGINAL AUTHORS OF THE CHAPTERS
TO SEE IF THEY WANTED TO ADD A
COMMUNITY PARTNER AND REUPDATE
THEIR CHAPTERS AND REFERENCES
AND FELT A LITTLE BIT LIKE THIS
NEW YORK CITY PICTURE.
WE WERE GOING IN DIFFERENT
DIRECTIONS BUT MANAGED OVER TWO
YEARS AND 250 AUTHORS LATER TO
REVISE THE EDITION AND
DR. BURMMAN FROM THE CDC
SHEPHERDED THIS BOOK THROUGH THE
CLEARANCE PROCESS WHICH IS NOT
SMALL TASK.
I'LL TALK ABOUT THE PROCESS AND
A FEW SLIDES ON WHAT HAS CHANGED
OVER THE LAST DECADE.
SO FOR PROCESS WISE, WE DID
CHAPTER AUTHOR CALLS MONTHLY AND
DID LARGE AND SMALL GROUP
MEETINGS.
AND WE WORKED ON EACH CHAPTER.
WE HAD THESE CEMENTING MEETINGS
WHERE WE TALKED ABOUT CORE
PRINCIPLES WE WANTED TO CEMENT
INTO THE FOUNDATION AND MEETINGS
TO INTEGRATE ACROSS THE
CHAPTERS.
AND WE DID DO A NATIONAL CALL
FOR THE EXEMPLARS FOR THE BOOK
LED BY DJ McCUSKY WHO RECENTLY
RETIRED FROM NURSING RESEARCH
AND CREATED A NATIONAL
APPLICATION AND SUBMISSION
PROCESS AND IT WAS SENT OUT
NATIONALLY AND WE HAD
REPRESENTATION AS YOU CAN SEE ON
THIS SLIDE FROM MOREHOUSE
MEDICINE AND CLINICAL RESEARCH
AND VARIOUS FEDERAL AGENCIES.
WITH 250 PEOPLE I CAN'T START
NAMING NAMES BUT I WILL TALK
ABOUT SOME OF THE MODELS THAT
HAVE BEEN REVISED.
SO NEW MODELS FOR ENGAGEMENT.
WHILE WE'VE HAD A LINEAR MODEL
TO HELP PEOPLE CONCEPTUALIZE THE
LEVELS OF ENGAGEMENT CAN BE
ACHIEVED AT WE OPTED FOR THIS
MODEL FROM THE NATIONAL
ACADEMIES OF MEDICINE THAT
CENTERED COMMUNITY ENGAGEMENT
AND THE CORE PRINCIPLES AROUND
COMMUNITY ENGAGEMENT TO GUIDE
THE WORK.
SO WE KNOW THAT THERE IS SOME
SERVICE THAT CAN COME FROM THE
LINEAR MODEL BUT IN PRACTICE WE
ALSO LEARNED THAT IT ISN'T
ALWAYS A LINEAR PROCESS.
SO WE THOUGHT CENTERING THE
COMMUNITY VOICE USING THIS MODEL
AS OUR GO TO MODEL, OUR CONCRETE
MODEL FOR GUIDING THE BOOK CAN
HELP US ACHIEVE BETTER, DEEPER
COMMUNITY ENGAGEMENT.
SO WE EXPANDED THE DEFINITION.
IT HAS PREVIOUSLY BEEN AROUND
GEOGRAPHIC CO-LOCATION OR SHARED
CONDITIONS AND WE KNOW THAT IN
THIS VIRTUAL WORLD AND WITH THE
CENTERED VOICE OF COMMUNITY, WE
REVISED IT AND EXPANDED THE
DEFINITION SO COMMUNITY
ENGAGEMENT BUILDS SUSTAINABLE
RELATIONSHIPS THROUGH TRUST AND
COLLABORATION, STRENGTH AND
COMMUNITY WELL BEING.
THE PROCESS HAVE YOU HAD BE
ENDURING, EQUITABLE AND
CULTURALLY SENSITIVE TO ALL
PARTICIPANTS WITH A SHARED GOAL
OF ADDRESSING THE CONCERNS OF
THE COMMUNITY.
WE WANTED TO MAKE SURE OUR
RESEARCH LEAVES THE COMMUNITY IN
BETTER SHAPE AND IS DRIVEN BY
THEIR OWN NEEDS AND CONCERNS AS
DR. COOK SAID.
AND THEN WE ARE PLEASED TO SAY
OUR NINE GUIDING PRINCIPLES AGED
WELL SO WE KEPT THEM ALL.
THEY'RE AVAILABLE FOR FREE IN
ENGLISH AND SPANISH IN THE BOOK.
I WON'T GO THROUGH ALL OF THEM
BUT THEY'RE IN BEING CLEAR ABOUT
THE PURPOSE AND GOALS OF THE
ENGAGEMENT.
UNDERSTANDING THE COMMUNITY THAT
YOU'RE IN, BUILDING AND
MAINTAINING TRUST, KNOWING THAT
SELF-DETERMINATION IS THE RIGHT
OF THE PEOPLE IN THE COMMUNITY
AND BEING IN PARTNERSHIP WITH
EQUAL BALANCE OF POWER.
TAKING AN ASSET-BASED APPROACH
AND RECOGNIZING THE STRENGTHS OF
THE COMMUNITY AND WHAT THEY
BRING.
RECOGNIZING INDIVIDUALS AND
INSTITUTIONS SHOULD BE PREPARED
FOR THIS POWER DIFFERENTIAL AND
DEMONSTRATING TRUST AND
TRUSTWORTHINESS WHICH IS THE ONE
WE ADDED.
AND WE ADDED ADDITIONAL MODELS.
THERE'S ALWAYS BEEN SOME
QUESTION ABOUT THE MEASUREMENT
AND METRICS AROUND COMMUNITY
ENGAGEMENT AND EQUITY AND
DISSEMINATION AND
IMPLEMENTATION.
SO THROUGH THE WORK OF
DR. SHELTON AND DOCTORS,
ACINTOBE AND CAMPOS AND ALSO A
FABULOUS MODEL BY
DR. WALLERSTEIN WE ADDED MODELS
FOR IMPLEMENTATION AND
DISSEMINATION, PROGRAM
EVALUATION AND PROCESS
EVALUATION.
SO THE BOOK IS SET FOR RELEASE
IN THE FALL.
I WILL SAY THAT WE HAVE DONE
SOME INCREDIBLE WORK AROUND
INTEGRATING THE PATIENT AND
PARTICIPANT VOICE INTO STRATEGIC
PLANS FOR RESEARCH ROAD MAPS
SUCH AS IN THE ALL OF US
RESEARCH PROGRAM WHERE WE'VE
BEEN ABLE TO DO NATIONAL
TOURISTS TAKING THE SCIENTIFIC
ROAD MAP FROM PROGRAMS LIKE THAT
AND MAKING SURE THAT THEY
REFLECT COMMUNITY PRIORITIES AND
THE INTEREST OF COMMUNITIES AT
THE SAME TIME AS DR. COOK SAID,
GARNERING SUPPORT FOR THE
RESEARCH AND PROGRAM AND MAKING
SURE THAT IT'S APPLICABLE.
I THANK EVERYONE FOR THE TIME.
I'M GRATEFUL TO BE A PART OF THE
PANEL AND LOOK FORWARD TO THE
DISCUSSION AFTERWARDS.
>> THANK YOU SO MUCH, LIZ.
THIS WAS AN EXCELLENT
PRESENTATION AND WE'RE EXCITED
FOR THE RELEASE OF THIS BOOK.
IT'S BEEN QUITE AN EFFORT IN THE
MAKING OF THIS THIRD EDITION.
THANK YOU FOR SHARING THAT WITH
US.
NOW IT'S MY HONOR TO PRESENT OUR
FINAL PANELISTS WHO ARE DEAR
COLLEAGUES OF MINE AND ARE THE
PRINCIPLE INVESTIGATORS OF THE
COMMUNITY ENGAGEMENT ALLIANCE
CONSULTATIVE RESEARCH, DR. MAS
SARTRE AND SHE'S A PROFESSOR OF
CLINICAL AND TRANSLATIONAL
SCIENCE INSTITUTE AND SHE
CURRENTLY SERVED AS THE FOUNDER
AND MEDICAL DIRECTOR OF THE
UNIVERSITY OF PITTSBURGH MEDICAL
CENTER PRIMARY CARE PRECISION
MEDICINE CLINIC AND AS THE
ASSOCIATE DIRECTOR OF CLINICAL
SERVICES FOR THE INSTITUTE FOR
PRECISION MEDICINE AND
INTERESTED IN DEVELOPING
PRECISION MEDICINE FOR PRIMARY
CARE PROVIDERS AND TRAINEES AND
BEING A RESEARCH CATALYST
REPRESENTING UNDER SERVED
POPULATIONS IN BIOMEDICAL
RESEARCH AND TEACHES RESIDENTS
AT HER CLINIC AND HOSPITAL AND
SERVES AS DIRECTOR AT BETHANY
HOSPICE AND DR. RICHMOND SHARES
A ROLE WITH THE EXECUTIVE
DIRECTOR OF COMMUNITY CAMPUS
DIRECTIVE AND ADVOCATING FOR THE
INCREASED ROLE OF COMMUNITIES
AND RESEARCH IN PUBLIC HEALTH
AND IN THE ROLE OF EXECUTIVE
DIRECTOR HE'S ADVANCING THE
ORGANIZATION'S COMMITMENT TO
SOCIAL JUSTICE AND HEALTH
EQUITY.
HE SERVED AS THE PRINCIPLE
INVESTIGATOR OF PATIENT
ENGAGEMENT ENHANCING CULTURAL
RESPONSIVENESS RESEARCH FUNDED
BY PCORI AND AS A CO-PRINCIPLE
INVESTIGATOR OF ENSURING ETHICAL
COMMUNITY ENGAGED RESEARCH
ELEVATING THE ROLE AND IMPACT OF
COMMUNITY-BASED IRBs AND
RESEARCH REVIEW COMMITTEES
FUNDED BY THE NATIONAL INSTITUTE
OF MINORITY HEALTH AND HEALTH
DISPARITIES.
HE HOLDS A MASTER'S OF SOCIAL
WORK FROM THE OHIO STATE
UNIVERSITY.
SHALE SHARE LESSONS LEARNED
AROUND MEANINGFUL COMMUNITY
ENGAGEMENT AND RESEARCH.
THE PANEL DISCUSSION WILL
CONCLUDE WITH A Q&A SESSION
MODERATED BY MYSELF.
WITH THAT I'LL HAND IT OVER TO
AL AND MYLYNDA.
>> I'M PART OF THE CAMPUS
COMMUNITY FOR HEALTH AND YOU'LL
HEAR FROM DR. MASSART SHORTLY.
I WANT TO ACKNOWLEDGE THE
LECTURE BY DR. COOK AND DR. COHN
AND FROM THAT IT HAS ALLOWED ME
TO THINK ABOUT HOW TO MOVE INTO
THIS THIRD PRESENTATION THIS
AFTERNOON AND WHAT I HEARD WAS A
LOT ABOUT THE SCIENCE OF WHAT WE
KNOW AND I RECALL RESEARCHERS
AND TEAMS HAVE TROUBLE
IMPLEMENTING AND CEACR PROVIDES
PRACTICAL STRATEGIES AND
RESOURCES TO RESEARCH TEAMS TO
HOW TO DO THE WORK OF COMMUNITY
ENGAGEMENT.
PULLING TOGETHER ALL THE LESSONS
THAT WE KNOW WORK BEST PRACTICES
AND YOU'LL HEAR THIS AFTERNOON
HOW WE'RE DOING THAT.
CEACR IS AN INITIATIVE OF THE
NATIONAL INSTITUTES OF HEALTH
COMMUNITY ENGAGEMENT OR CELE
ESTABLISHED BY THE 2020 AT THE
HEIGHT OF THE PANDEMIC AND WE
SUPPORT CELE AND RESEARCH TEAMS.
OUR MISSION IS TO APPLY
PRINCIPLES OF RESEARCH AND
INCLUSIVE PARTICIPATION TO
PROMOTE HEALTH EQUITY AND
RESEARCH RECIPROCITY.
OUR OBJECTIVES ARE TO USE A
PANEL OF COMMUNITY AND ACADEMIC
LEADERS AND WE'LL DESCRIBE HOW
WE DO THAT.
SHARE COMMUNITY-CENTERED
PRACTICES THAT ENCOURAGE
RESEARCH RECIPROCITY THE
CORNERSTONE OF OR WORK WITHIN
ACADEMIC COLLABORATIONS AN
ASSIST RESEARCH TEAMS INCREASING
THEIR TRUSTWORTHINESS AND YOU
HEARD A LOT ABOUT
TRUSTWORTHINESS FROM DR. COHN
AND DR. COOK AND THEN FINALLY TO
ADVOCATE FOR AND PROVIDE
EDUCATION USING
COMMUNITY-PARTNERED RESEARCH TO
ADDRESS HEALTH DISPARITIES AND
INEQUITIES.
TO THE WORK IS BEST THOUGHT
ABOUT ON A TWO-PRONG APPROACH.
ON THE ONE HAND WE ARE ENGAGED
IN WHAT WE DESCRIBE AS EPISODIC
SERVICES.
THOSE ARE ONE-TIME CONSULTS FOR
CLIENTS SEEKING ANSWERS TO A
SPECIFIC PROBLEM, ASSET REQUEST
OR A TOOLKIT.
AND SO USING THE EPISODIC
APPROACH WE PROVIDE EXPERT
PANELS WHICH ARE AMAZING GROUPS
OF BOTH ACADEMIC AND COMMUNITY
EXPERTS WHO HAVE BROUGHT
TOGETHER TO PROVIDE CONSULTATION
TO A RESEARCH TEAM.
THE WORK ALSO INCLUDES ASSET
REQUEST WHEREIN WE CAN WORK WITH
THE TEAM TO DEVELOP ASSET
RESOURCES AND THEN FINALLY TO
PROVIDE OTS OR OFFICE THE SHELF
TOOL KITS WHICH ARE BEST
PRACTICES THE DOCUMENTATION OF
BEST PRACTICES SHARED NOT ONLY
WITH THEM BUT OTHER TEAMS AS
WELL.
THE SECOND APPROACH TO OUR WORK
IS THAT OF LONGITUDINAL.
EPISODIC IS ONE TIME OR SHORT
TERM.
LONGITUDINAL CONSULTS ARE MORE
EXTENDED CONSULTS FOR CLIENTS
SEEKING ANSWERS TO A LARGER MORE
COMPLEX ISSUE AND THEY NEED OUR
SUPPORT AND ASSISTANCE ON A
LONG-TERM BASIS.
AS PART OF OUR LONGITUDINAL
SUPPORT WE PROVIDE EXPERT PANELS
SIMILAR TO THE EPISODIC CONSULTS
AND REVIEW OF RECRUITMENT
OUTREACH MATERIALS.
WE PROVIDE COMMUNITY LISTENING
SESSIONS AND KEY INTERVIEWS,
COMMUNITY ENGAGED RESEARCH
TRAININGS AND THEN FINALLY
CUSTOMIZED WEBINAR SERIES OR
TRAINING SESSIONS.
EXPERTS PANELS, THIS IS A
DELIGHT TO DESCRIBE FOR US
BECAUSE THIS IS THE HEART AND
SOUL OF OUR WORK TO CONVENE AND
CURATE EXPERT PANELS WHICH ARE
COMPRISED OF COMMUNITY MEMBERS
AND ACADEMIC PARTNERS FROM
ACROSS THE U.S. WHO HAVE A
VARIETY OF EXPERTISE BOTH LIVED
EXPERIENCE AS WELL AS ACADEMIC
RESEARCH EXPERIENCE.
THESE SESSIONS ARE RECORDED AND
TRANSCRIBED TO USE TECHNIQUES TO
EX PROVIDE RECOMMENDATIONS.
THE WORK OF OUR EXPERT PANELS IS
SIMILAR TO COMMUNITY ENGAGEMENT
STUDIOS MANY ARE FAMILIAR WITH
THAT HAVE BEEN PROMULGATED FOR
THE PAST FEW YEARS IN
PARTICULARLY AMONG OUR CTSA
PARTNERS.
THE WORK TO BETTER UNDERSTAND IT
I'LL SHARE EXAMPLES OF TOPICS
THAT WE HAVE WORKED ON FOR THE
PAST TWO AND A HALF YEARS WHO
REVIEWED POPULATION SPECIFIC
ENGAGEMENT MATERIALS AND HELP IN
SUPPORTING THE SERIES OF DURABLE
RESOURCES FOR FORMER APPLICANTS
TO A COMMUNITY-PARTNER RESEARCH
GRANT.
WE SUPPORTED THE DEVELOPMENT OF
PARTICIPANT APPRECIATION
PRACTICES FOR STEADY CLOSURE AND
SUPPORTED THE DEVELOPMENT OF
COMMUNITY LISTENING SESSIONS
FOCUSSED ON A SPECIFIC RESEARCH
TOPIC.
THE TOPICS WE HAVE ADDRESSED AND
SUPPORTED HAVE INCLUDED COVID,
MATERNAL HEALTH, PEDIATRIC DOWN
SYNDROME AND MANY MORE AND
FACILITATING PROMOTING IDEAS AND
ALIGNMENT THROUGHOUT THE
RESEARCH PRFG.
-- PROCESS.
AN EXCITING PART OF OUR WORK IS
THE EVALUATION.
WE LOOK AT THE EVALUATION OF
MANY DIFFERENT LEVELS.
IN PARTICULAR WE FOCUS ON
PROFESSION EVALUATION WHICH IS
THE HOW WE DO OUR WORK AND WANT
TO MAKE SURE OUR CLIENTS, OUR
CUSTOMERS ARE SATISFIED SO WE
ADMINISTER SATISFACTION SERVICES
THAT HAVE BEEN ADJUSTED TO CEACR
PROCESS AND HAVE DASH BOARDS AND
IMPACT EVALUATIONS.
IT'S IMPORTANT FOR US TO REALLY
UNDERSTAND WHAT IMPACT HAS OUR
CONSULTATION PROVIDED TO THE
TEAM.
WHAT DIFFERENCE HAVE WE MADE.
SO WE SUPPORT THEM IN PROVIDING
IMPACT EVALUATIONS ON A 30, 90
AND 180 DAYS POST-CONSULT AND
FINALLY WHAT YOU'LL HEAR MORE
ABOUT IS OUR PRE VISION OUTREACH
TOOLS.
I'LL PASS ON TO DR. MASSART.
>> THANK YOU, AL.
LET'S GO AHEAD AND ADVANCE TO
THE NEXT SLIDE.
SO THIS SLIDE IS FEATURING OUR
CEACR EVIDENCE OF IMPACT MODEL
BUILT AND MODIFIED FROM THE
PREVIOUSLY PUBLISHED EVIDENCE IN
2019 AND THIS WAS A WAY FOR US
TO REALLY START TO EVALUATE THE
QUALITATIVE WORK IN A WAY THAT
WAS SLIGHTLY MORE QUANTITATIVE
WHERE WE AS AL EXPLAINED HAVE
PANELS AND COLLECTED
RECOMMENDATIONS FROM OUR
PANELISTS TO OUR RESEARCH
CONSULTEES.
WHICH ON THE LEVEL OF IMPACT
SCORE INHERENTLY AT A LEVEL TO
SITUATED LEARNING WHERE WE ASKED
EXPERTS QUESTIONS AND THEY
RESPONDED WITH THEIR BEST
ADVICE.
WE FOLLOW CONSULTEES WITH
SURVEYS AT 30, 90 AND 180 DAYS
TO SEE WHAT THE RESEARCH TEAMS
HAVE DONE WITH THOSE SPECIFIC
RECOMMENDATIONS.
AND THE INCREASE IN LEVEL IS
BASED ON HOW THE TEAMS HAVE
IMPLEMENTED THESE SPECIFIC
RECOMMENDATIONS OVER TIME.
THIS IS FEATURING AN EXAMPLE
THAT WAS SHARED AT A POSTER
SESSION AT HPAA LAST YEAR IN
PARTNERSHIP WITH THE NATIONAL
RECOVER RESEARCH STUDY WHERE WE
HELD SEVERAL DIFFERENT
COMMUNITY-SPECIFIC EXPERT PANELS
AROUND SOME OF THEIR ENGAGEMENT
AND OUTREACH MARKETING AND
RECRUITMENT FLYERS.
WHAT WE CAN SEE HERE IN THE
TABLE IS THAT AGAIN WHILE ALL OF
THE INITIAL EXPERT
RECOMMENDATIONS ARE SCORED ON
OUR LEVELS OF EVIDENCE IMPACT
MODEL AT A 2 OVER TIME TO 180
MANY ELEVATED TO A LEVEL 3 AND
SEVERAL UP TO A LEVEL 4 AND
FOLLOWING THE PRESENTATION OF
THE POSTER AND NATIONAL LEVEL TO
LEVEL 5.
OF ALL THE RECOMMENDATIONS THAT
WERE PROVIDED TO THE RECOVER
TEAM, 75% TO 100% WERE ACTED
UPON WITH RAPID IMPLEMENTATION
AND IMPACT.
SINCE THE INCEPTION IN NOVEMBER
OF 2021 CEACR ESTABLISHED ITSELF
AS A UNIQUE RESOURCE FOR
TARGETED CONSULTATION AROUND
COMMUNITY ENGAGEMENT AND
INCLUSIVE PARTICIPATION AND WE
HAVE EVOLVED OVER THE LAST THREE
YEARS.
WE STARTED OUT A SMALL TEAM
FOCUSSING ON DEVELOPING THE
EXPERT PANEL PROCESS WHICH IS
REALLY BUILT SIMILARLY TO THE
COMMUNITY ENGAGEMENT STUDIO
MODEL WITH SOME KEY DIFFERENCES
WHERE THE PANEL IS BROUGHT IN
HIGHLY TAILORED TO THE SPECIFIC
QUESTION OF OUR CONSULTEE AND
PULLED FROM BOTH LIVED
EXPERIENCE AND ACADEMIC EXPERTS
ACROSS THE COUNTRY.
YOU CAN SEE IN THE FIRST YEAR WE
SERVED 11 CONSULTEES WITH 64% OF
THEM BEING INTERNAL TO THE CELE
COHORT WHERE THIS EVOLVED OVER
YEAR 2.
WE SERVED AN ADDITIONAL
CONSULTEES WHERE WE WERE
ENGAGING IN CLIENTS NOT PART OF
THE CELE COHORT NATIONALLY.
WE ADDED THE LONGITUDINAL
CONSULT MODEL AND COMPLETED OVER
10 EPISODIC CONSULTS IN YEAR
THREE AND LAUNCHED THREE
LONGITUDINAL CONSULTS SERVING
NOW OVER 17 CONSULTEES WITH THE
MAJORITY BEING NON-CELE.
THEN JUST TO FEATURE SOME OF THE
HIGHLIGHTS FROM YEAR 3 IN
PARTICULAR, WE WERE ABLE TO
DEVELOP EXPERT PANELISTS
EXPERIENCE SURVEYS.
WE WANTED IN YEAR 3 TO FOCUS IN
AND UNDERSTAND THE EXPERIENCE OF
THE EXPERTS THEMSELVES AND
EVALUATE WHAT THEY WERE GAINING
FROM THE IS EXPERIENCE.
IN ADDITION WE WERE ABLE TO
COMPLETE EXPERT PANELS WITH
NCPCR AND HEART SHARE WHERE WE
HAD GENERATED OVER 54
RECOMMENDATIONS FOR THEM TO
INTEGRATE INTO THEIR ENGAGEMENT
PROJECT.
AS WELL AS EPISODIC CONSULT WITH
WEST VIRGINIA SCHOOL OF MEDICINE
WHICH RESULTED IN AN OFF THE
SHELF PROJECT WE CREATED
TOGETHER AROUND GROWING AND
SUSTAINING COMMUNITY
PARTNERSHIPS WHICH WE WERE ABLE
TO PRESENT AT A LIVE IN PERSON
CONFERENCE HOSTED BY WSVOM.
TO HIGHLIGHT THE LONGITUDINAL
CONSULTS WE'VE WORKED WITH
CAMPUS AND DEVELOP A WEBINAR
SERIES THAT JUST WRAPPED UP AND
HAD 350 ATTENDEES OVERALL THAT
JOINED.
WE HAD EVALUATION TO LOOK AT THE
ATTENDEES AND MOST OF THE
ATTENDEES HAVE NOT YET
PREVIOUSLY BEEN A P.I. ON AN NIH
GRANT WHICH WAS THE INTENT OF
THE WEBINARS WHICH WERE BUILT TO
HELP IDENTIFY FUNDING
OPPORTUNITIES AND GRANT
APPLICATION TECHNIQUES FOR THESE
COMMUNITY-BASED ORGANIZATIONS
WHO ARE PARTNERING WITHIN
CAMPUS.
AND OVER HALF THE WEBINAR
ATTENDEES WERE AFFILIATED WOMEN
THE TARGET AUDIENCE OF A
COMMUNITY ORGANIZATION.
WE HAVE ALSO COLLABORATED WITH
RECOVER ON A LONGITUDINAL
CONSULT AND ARE WORKING WITH
LIAISONS TO CO-CREATE A WRITING
AND DISSEMINATION INSTITUTE AS
WELL AS UTILIZING AND DEVELOPING
A COMMUNITY-CENTERED EVALUATION
PROCESS.
AND RECENTLY WE'VE BEEN WORKING
WITH THE EARLY STAGES OF CELE
FOR GENOMICS HOLDING TWO KEY
INFORMANT INTERVIEW SESSIONS
WITH GENOMICS AND ENGAGEMENT
EXPERTS WORKING IN THE FIELD IN
THE LAST DECADE AND PLANNING FOR
UPCOMING COMMUNITY LISTENING
SESSIONS THAT WILL BE HELD IN
SEPTEMBER.
SO WE HAVE LEARNED MANY LESSONS
FROM THE LAST THREE YEARS'
EXPERIENCE AND TAKING THESE
FORWARD INTO CONTINUING TO
EVOLVE THE WORK THAT CEACR IS
DOING.
SOME OF WHAT WE HAVE DONE HAS
BEEN AROUND REFRAMING OUR
SERVIC
SERVICES CREATE A MENU OF
SERVICES TO PROVIDE TO CULTEES.
WE'LL CONTINUE TO CUSTOMIZE IT
TO SIZE AND SCOPE OF THEIR
NEEDS.
WE'LL WORK HARD TO CONTINUE TO
SUPPORT SPECIFICALLY
CONSULTATIVE SERVICES FROM OUR
PERSPECTIVE ESPECIALLY IN THE
LONGITUDINAL PROJECTS AND HOW WE
MAY BE ABLE TO ADVANCE THEIR
COMMUNITY ENGAGEMENT AND
OUTREACH PROCESS.
WE'LL CONTINUE TO IMPROVE OUR
EXPERT PANEL SEEKING MORE
FEEDBACK AND IT ITERATING THE
PROCESS TO THE PANELISTS
THEMSELVES AND PROCESS AND
CONTINUE TO DEVELOP MESSAGING
AND GETTING THE WORD OUT ABOUT
THE AVAILABILITY OF OUR SERVICES
POSSIBLY THROUGH SHORT VIGNETTES
HIGHLIGHTING SOME CONSULTS WE'VE
BEEN ABLE TO ESTABLISH THUS FAR
AND DISSEMINATING THROUGH SOCIAL
MEDIA.
WE'RE ALSO LOOKING AT HOW TO
SCALE OUR SERVICES AND HOW TO
STRATEGICALLY DEVELOP RESOURCES
SO THAT CLIENTS CAN ACCESS THESE
ASYNCHRONOUSLY AND WHERE CEACR
CAN COME IN AND SUPPORT THEM
AFTER THE BASELINE SERVICES HAVE
ALREADY BEEN ACCESSED AND
PROVIDED.
UP WITH OF THE THINGS WE'RE
TAKING FORWARD IN THE NEXT
COUPLE OF OUR WORK IS THINKING A
LOT ABOUT SOMETHING THAT WAS
BROUGHT UP PRIOR TALKS AS WELL
WHICH IS THE DIFFERENCE OF WHERE
YOU ENGAGE TO PARTNER AND FORM
LONG-TERM RELATIONSHIPS WITH
COMMUNITY-BASED ORGANIZATIONS
VERSUS THE JUST IN TIME
ENGAGEMENT TO RECRUIT CONCEPT.
OVER THE NEXT SEVERAL YEARS WE
HOPE TO ADVOCATE TO SHIFT THE
RESEARCH ENGAGEMENT RESEARCH
FROM ENGAGE TO RECRUIT TO ENGAGE
TO PARTNER.
SOME FACE CHALLENGES IN
HISTORICALLY UNDER REPRESENTED
COMMUNITY AND HOPE TO GROW A
CULTURE CHANGE OF SEEKING TO
DEVELOPMENT ENGAGEMENT AND
RESEARCH EARLY IN THE RESEARCH
CONTINUUM AND LONG BEFORE
STUDIES FORM A COLLABORATIVE
APPROACH AND TREATING THEM AS
EQUAL STAKEHOLDERS AND THE
TARGETED APPROACH FOR THE ENGAGE
TO RECRUIT WHICH IS FOCUSSED
MORE ON IDENTIFYING AND REACHING
OUT TO INDIVIDUALS WITH THE ROLE
OF ENROLLMENT AND LOOK AT THE
PRINCIPLES OF COMMUNITY-ENGAGED
RESEARCH WITH LONG TERM
RELATIONSHIPS VERSUS SHORT TERM
ACTION AND VERSUS JUST
RECRUITMENT GOALS AND HAVING
SHA
SHAREDSES BENEFIT TEAMS AND
PROVIDING A VOICE IN THE
RESEARCH PROCESS OPPOSED TO
TRANSACTIONAL RELATIONSHIPS
WHICH IS JUST ABOUT PARTICIPANTS
CONTRIBUTING TO THE RESEARCH
WITHOUT NECESSARILY BENEFITING
IN THE LONG-TERM.
-- LONG TERM.
WE HOPE TO DO THIS BY CENTERING
THE COMMUNITY-BASED
ORGANIZATIONS AND PARTNERS AS
THE BACKBONE OF
COMMUNITY-ENGAGED AND OUTREACH
WORK.
WE'RE DOING THIS BY DEVELOPING
THE BEST PRACTICES FOR ENGAGING
EARLY AND HOW TO ENGAGE FOR THAT
LONG-TERM PARTNERSHIP OPPOSED TO
THOSE JUST IN TIME RECRUIT TO
ENGAGE MOMENTS.
HOWEVER, WE RECOGNIZE THAT BOTH
OUR EQUALLY IMPORTANT AND WILL
CONTINUE TO HAPPEN.
AND SO WE HAVE DEVELOPED A NEW
TOOL TO TRY TO FURTHER
UNDERSTAND BOTH WHERE RESEARCH
TEAMS ARE AT IN TERMS OF THEIR
EXPERIENCE AND UNDERSTANDING OF
COMMUNITY-ENGAGED RESEARCH,
REALLY DOING A BASELINE CAPACITY
ASSESSMENT WITH THEM.
WE HOPE TO SPEND THE NEXT YEAR
WITH THE TOOL AS WELL AS A JUST
IN TIME ENGAGEMENT TOOL THAT
LOOKS AT SPECIFIC INDIVIDUAL
ENGAGEMENT AND OUTREACH
OPPORTUNITIES TO TRY TO DEEPEN
THE VALUE OF THE MOMENTS AND TO
MAKE THEM MORE SUCCESSFUL IN
TERMS OF ACTUALLY ENROLLING
SUCCESSFULLY PARTICIPANTS INTO
THOSE STUDIES.
FINALLY, WE HOPE TO CONTINUE TO
COLLABORATE WITH THE AMAZING
RESEARCHERS THAT HAVE COME
BEFORE US IN LAYING THE GROUND
WORK AROUND COMMUNITY ENGAGED
WORK AND PARTNERSHIP CONTINUUMS
AND TO TRY TO MEET NOT ONLY THE
COMMUNITIES WHERE THEY'RE AT AND
MEET THE RESEARCH TEAMS WHERE
THEY'RE AT AND UNDERSTAND
EXACTLY WHERE THEY NEED TO
INTERACT AND IMPROVE
OPPORTUNITIES FOR SUCCESSFUL
ENGAGEMENT AND LONG-TERM
PARTNERSHIP TO HOPEFULLY MOVE
THIS FORWARD AS A CULTURE CHANGE
TOWARDS ENGAGING LONGITUDINALLY
AND NOT UNDER EACH UNIQUE
INDIVIDUAL CIRCUMSTANCE FOR
STUDIES THAT ARE AT HAND.
FINALLY, THIS IS OUR CONTACT
INFORMATION.
IF YOU'D LIKE TO REACH OUT TO US
TO CONNECT AND SEE WHERE WE
MIGHT BE ABLE TO SYNERGIZE IN
OUR COLLABORATIVE WORK OR HAVE A
CONSULT REQUEST YOU HAVE TO
REVIEW AND IF YOU'D CONSIDER
JOINING OUR ROSTER OF EXPERT
PANELISTS THAT WE COULD
POTENTIALLY CALL UPON YOU TO
SERVE ON ONE OF OUR EXPERT
PANELS IN THE FUTURE.
THANK YOU SO MUCH.
>>
>> THANK YOU FOR THE LESSONS
LEARNED AND BEST PRACTICES ON
THE CONSULTATIVE WORK.
NOW IS THE TIME TO OPEN UP FOR
QUESTIONS.
GEORGE ASKED WHETHER WE HAVE A
MORE TANGIBLE RELEASE DATE FOR
THE PRINCIPLES OF ENGAGEMENT
DR. COHN PRESENTED ON AND
DR. COHN PROVIDED OCTOBER,
NOVEMBER.
YOU CAN SEE HOW EVERYONE'S
WAITING WITH BATED BREATH.
AND ANOTHER QUESTION AND I'M
POSING THIS TO THE GROUP AND
FEEL FREE TO JUMP IN AND ALL OF
YOU CAN WEIGH IN IF YOU'D LIKE.
CAN YOU PROVIDE GUIDANCE ON WHAT
YOU'VE SEEN IN BEST PRACTICES IN
CLOSING A RESEARCH PROJECT IN A
COMMUNITY?
>> ONE OF THE THINGS I WAS
THINKING ABOUT WHEN I SAW THE
QUESTION IS THE IMPORTANCE OF
THE ONGOING DEVELOPMENT OF
RELATIONSHIP AND TRUST THAT
HAPPENS THROUGH THE ENGAGEMENT
PROCESS.
THAT EVEN WHEN A RESEARCH STUDY
ENDS, IT'S NOT THE END OF THAT
ONGOING RELATIONSHIP AND TRUST
AND TRUSTWORTHINESS YOU
ESTABLISHED WITH THE COMMUNITY
AND IN OUR FOUNDATIONAL
EXPECTATIONS FOR PARTNERSHIPS IN
RESEARCH IT'S PART OF THE
BUILDING BLOCKS AND ENGAGEMENT
IN MANY WAYS WE ALSO HEARD THIS
FROM DR. MASSART ENGAGEMENT
BEING SOMETHING THAT HAPPENS
EARLY ON AND IS AN ONGOING
EFFORT EVEN BEYOND ANY PROJECT
BY PROJECT SPECIFICITY.
AND ONE OF THE THINGS THAT WE DO
OFFER IN TERMS OF RECOGNIZING
THAT SUPPORT'S NECESSARY, AT
PCORI THERE'S THE OPPORTUNITY
FOR ENGAGEMENT AWARDS THAT ALLOW
FOR THE DEVELOPMENT OF RESEARCH
AGENDAS, QUESTIONS THAT MAY BE
OF IMPORTANCE FOR CER AND
RESEARCH CONDUCT THROUGH CER
FUNDING AND DISSEMINATION AND
IMPLEMENTATION FUNDING THAT
ANTICIPATES THE COMMUNITY
ENGAGEMENT AND SUPPORT AND IT
DON'T THINK IT IT NEGATES THE
ONGOING ENGAGEMENT EXTENDS
BEYOND THE ARC OF THE PROJECT.
>> I'D LOVE TO ADD TO THAT,
THANK YOU, DR. COOK.
I'D LIKE TO SEE IT AS A CIRCLE
AND NOT AN END BUT THE BEGINNING
OF A NEXT PHASE OF PARTNERSHIP
AND IT WOULD BE AMAZE BEING IF
THERE WAS SUSTAINABLE LONG-TERM
FUNDING TO SUPPORT THOSE
RELATIONSHIPS BUT I THINK REALLY
THINKING ABOUT HOW TO HONOR AND
THANK THE COMMUNITIES THAT WERE
INVOLVED IN THE RESEARCH STUDY
IS A REALLY IMPORTANT PART
AROUND CLOSING THAT STUDY.
AND THEN HOW TO DISSEMINATE THE
RESULTS BACK AS SOON AS MADE
AVAILABLE OR POSSIBLE BACK TO
THE COMMUNITY.
AND HAVING THAT PLAN AND THAT
PLAN PROBABLY SHOULD START FROM
THE BEGINNING BUT THAT'S WHERE
THAT TRANSITION CAN OCCUR WITH
THAT FOCUS NOW ON HONORING AND
THANKING PARTICIPATION AND DEM
DISSEMINATING THE RESULTS BACK
TO SEE HOW THE COMMUNITY CAN BE
EMPOWERED WITH THE DATA.
IT'S A VALUE AT SOME LEVEL, I
GUARANTEE IT.
THINK OF ADDING THAT AS YOUR
LONG-TERM CONTINUED
COLLABORATION.
>> AL WOULD YOU LIKE TO WEIGH
IN?
>> FROM THE PERSPECTIVE OF THE
COMMUNITY, AS I LISTEN TO THE
CONVERSATION WHAT SURFACES FOR
ME IS THE IDEA OF SEEING
COMMUNITY-BASED ORGANIZATIONS AS
BEING MORE JUST FOR THE PURPOSE
OF WORKING ON A SHORT-TERM BASIS
WITH THEM.
THINKING ABOUT CBOs, PATIENT
ORGANIZATIONS AND SIMILAR
GROUPS, MORE HOLISTICALLY, I
THINK IT'S IMPORTANT THAT WE
BEGIN THE WORK VERY EARLY ON TO
THINK ABOUT THEIR CAPACITY TO
SUSTAIN THEMSELVES BEYOND THE
FUNDED RESEARCH CYCLE AND
FRANKLY THIS IS WHAT HAS
SURFACED IN THE PAST YEAR AS WE
MOVE FROM MORE ACUTE PHASE OF
COVID-19 RESPONSE TO OUR CURRENT
WHERE WE ARE NOW.
THIS IS WHAT THE CONCERN HAS
BEEN FROM COMMUNITY-BASED
ORGANIZATIONS IS WHAT DO WE DO
NOW?
I THINK MORE ATTENTION HAS TO BE
GIVEN TO SUPPORTING THE GROWTH,
DEVELOPMENT, CAPACITY OF
COMMUNITY LEADERS AND GROUPS TO
SUSTAIN THEMSELVES ON A
LONG-TERM BASIS.
THAT'S A LOT OF WORK AND FRANKLY
IT'S DIFFERENT WORK THAN WHAT WE
HISTORICALLY HAVE BEEN ENGAGED
IN.
>> I'LL ALSO WEIGH IN IT'S COME
ACROSS FOR ALL OF US WHO DO THIS
WORK IN COMMUNITIES AND THE
RELATIONSHIP HAS TO BE
MAINTAINED.
I WORK WITH THE COMMUNITY IN
HARLEM I'VE BEEN WITH ALMOST 22
YEARS THROUGH GRANTS AND NO
GRANTS AND THAT RELATIONSHIP
THAT CAN'T BE GRANT DEPENDENT.
FOR FULL TRANSPARENCY I KNOW
ERICA AND SHE'S HEARD ME SAY A
FEW THINGS ABOUT THIS IN THE
PAST.
I DO THINK IN TERMS OF WHAT
MYLYNDA WAS SAYING IN
RE-IMAGINING THE ENTERPRISE THIS
IS A GROUND THAT'S VERY FERTILE
TO RE-IMAGINE HOW WE MAKE AND
KEEP THESE CONNECTIONS GOING.
I'LL ALSO SAY AT THE SAME TOPIC
THEY'RE NOT TRANSFERRABLE
NECESSARY.
IT'S NOT LIKE YOU CAN GIVE THIS
RELATIONSHIP TO SOMEBODY ELSE.
IT'S A RELATIONSHIP WE HAVE WITH
THE PEOPLE WE'RE WORKING WITH
AND THE REVERSE.
WE NEED TO THINK ABOUT IT AS WE
ESTABLISH THEM.
I THINK THERE'S ALSO SOME
THOUGHTS AND I THINK SHE MAY BE
ASKING ABOUT STANDING UP AND SUN
SETTING ADVISORY BOARDS AND WHAT
HES THE MOST SENSITIVE WAY TO DO
WORK LIKE THAT SO IT'S
RESPECTFUL OF THE WORK PEOPLE
HAVE PUT IN.
SO I THINK THERE'S A LOT OF WE
CAN THINK ABOUT AS WE DO THIS
WORK IN TERMS OF THE MIRROR
IMAGE OR OTHER SIDE OF HOW WE
SUN SET RESPECTIVELY AND MOVE
FROM ONE THING TO ANOTHER.
I THINK IT'S A GREAT QUESTION.
ONE WE ALL MAYBE NEED TO HAVE A
FOLLOW UP WEBINAR TO THINK ABOUT
THAT ONE.
>> LIZ, WHAT WOULD IT LOOK LIKE
IF AT THE END OF PROJECTS
ACADEMIC INSTITUTIONS AND
RESEARCHERS WERE WRITING LETTERS
OF RECOMMENDATION ON BEHALF OF
COMMUNITY AND PATIENT GROUPS?
WHAT WOULD THAT LOOK LIKE?
AND I THINK WE NEED TO EXPLORE
THAT EVEN MORE LIKE THINKING
WHAT WE DESCRIBED AND MYLYNDA
AND I DESCRIBE AS THE
RECIPROCITY OF THE PARTNERSHIP.
SO HOW DO WE FACILITATE THAT AND
SUSTAIN THAT?
I THINK ABOUT MY TERMS OF BEING
A LEADER ENGAGED IN THE CTSA AND
PCORI IT'S ALL BEEN AN ITERATIVE
PROCESSING LIKE A SCAFFOLDING
THAT BUILDS AND HAVE TO THINK OF
THE COMMUNITY AS THE SAME WAY,
BUILDING CAPACITY FOR A
LONG-TERM IMPACT IN RESEARCH.
IF THEY'RE NOT INTERESTED IN
RESEARCH LOOKING AT WHERE THE
INTEREST LIES AND SUPPORTING
THEM IN THOSE EFFORTS.
WE DO A LOT AROUND CAPACITY
BUILDING FOR THAT EXACT REASON.
WE HAVE A PORTFOLIO AROUND
CAPACITY BUILDING THAT DOES THAT
WORK AND THINKSES ABOUT IT
DEEPLY.
MY COLLEAGUE IS ON THE PHONE AND
DOES A LOT OF THAT AS WELL.
THINKING WHAT THAT LOOKS LIKE.
I THINK PLEASE HAVE US BACK AND
WE'LL DO A ROUND OF CAPACITY
BUILDING AND EVERYTHING THAT
LIFTS UP THE COMMUNITY SECTION.
I THINK IT'S SUCH AN IMPORTANT
PART OF THIS WORK.
>> THAT'S A GREAT IDEA FOR
ANOTHER LECTURE.
WE NEED TO COME BACK AND TALK
ABOUT THAT CTRIS CROSS-CUTTING
THEME IN CAPACITY BUILDING.
I KNOW WE'RE RUNNING SHORT OF
TIME AND WANT TO GET THIS OTHER
QUESTION THAT POPPED IN THE CHAT
FROM RONNI TAP.
I KNOW FDA AND HHS RELEASED
LANGUAGE ACCESS PLANS TO HELP
GUIDE COMMUNITY ORGANIZATIONS IN
THE RESEARCH PROCESS, DO PSH AND
CEACR HAVE LANGUAGE ACCESS
PLANS?
>> MINE WILL BE BRIEF, BUT YES,
CEACR IS WORKING IN AN OFF THE
SHELL PROJECT IN EQUITY AND
RESEARCH.
WE ARE VERY FORTUNATE TO WORK
WITH DR. RAGAVIN IN THE
UNIVERSITY OF PITTSBURGH
FOCUSSED ON LANGUAGE EQUITY
RESEARCHER IN RESEARCH.
SO WE HOPE TO BE SHARING AND
DISSEMINATING THAT IN THE NEAR
FUTURE.
THANK YOU.
>> I ALSO MAY HAVE A BRIEF
RESPONSE GIVEN OUR TIME.
I WANTED TO ACKNOWLEDGE THE
IMPORTANCE OF THAT WORK AND
MENTION THAT WE MAY HAVE BEEN AT
IT AT PCORI IN DIFFERENT ANGLES
AND THINK ABOUT THIS IN THE WORK
ONGOING GIVEN TO THE TYPES OF
SUPPORTS AND RESOURCES AND TOOLS
IN THE ENGAGEMENT PROCESS AND
SOME WAY I TALKED ABOUT THE
WEBINAR TOOL KITS TO BUILD
COMMON GOALS IN LANGUAGE FOR THE
NON RESEARCHER AND COMMUNITY TO
BE ACTIVE AND EQUAL PARTICIPANTS
IN RESEARCH AND WE ALSO ARE VERY
ATTENTIVE TO A TRANSLATION
CENTER WE UTILIZE TO HELP US
TRANSLATE WHAT IS TRADITIONAL
SCIENTIFIC LANGUAGE INTO THE WAY
PEOPLE IN COMMUNITIES CAN REALLY
RECEIVE IT AND ACCESS THAT
INFORMATION AND THAT WE USE FOR
DIFFERENT COMPONENTS OF OUR WORK
INCLUDING RESEARCH RESULTS WE
WANT DISSEMINATED BACK TO
COMMUNITIES AND ORGANIZATIONS.
I WOULD MAYBE COMMENT THAT AT
PCORI THERE'S A MULTIPRONGED
APPROACH BUT NOT ARTICULATED IN
A COMPLETE PLAN IN HAD THE WAY
FDA AND OTHERS HAVE STARTED TO
DO THAT.
SO IT'S A VERY IMPORTANT COMMENT
AND HELPS ME TO THINK AS WELL
ABOUT HOW WE MIGHT ADVOCATE THE
EFFORTS WE HAVE GOING ON AND
READILY AVAILABLE.
>> THANK YOU BOTH.
WE HAVE A LOT OF MORE QUESTIONS
COMING IN BUT WE HAVE THREE
MINUTES LEVEL AND HAVE AN
EXCELLENT PANEL SO THE FOLKS
SENDING ME THEIR QUESTIONS
SEPARATELY I'LL SHARE THEM WITH
OUR PANELISTS OFFLINE AND TRY TO
SHARE THEM WITH NIH COLLEAGUES
AS BROADLY AS POSSIBLE.
ONE QUESTION WE WANTED TO DIRECT
TO ALL OF YOU TO HELP CLOSE US
OUT IS WITH EVERYTHING YOU HAVE
EACH HEARD TODAY, PLEASE SHARE
ONE THING THAT GIVES YOU HOPE
FOR THE FUTURE OF MEANINGFUL
COMMUNITY ENGAGEMENT IN
RESEARCH.
STARTING WITH DR. COOK.
>> A LOT OF HOPE.
IT MAY BE STEMMING FROM THE FACT
THAT I WAS EVEN IN A SEMINAR
YESTERDAY FOCUSSED ON MORBIDITY
AND MORTALITY WITH SEVERAL
ORGANIZATIONS AND GROUPS.
ONE OF THE THINGS THAT I WALKED
AWAY WITH IS THE LEVEL OF
PASSION AND DEDICATION THAT IS
PRESENT IN THE COMMUNITIES THAT
I THINK HAVE THE INTENT OF THE
WORK WE THINK ABOUT IN THE
RESEARCH COMMUNITY AS RESEARCH
FUNDERS, ETCETERA.
AND I THINK THAT HOPE IN THE
PARTNERSHIP AND THE WAY IN WHICH
WE DO THIS COMES FROM THE FACT
THAT WE'VE LEARNED SO MUCH OVER
THE LAST DECADE OR TWO THAT
WE'RE STARTING TO SEE BEING
IMPLEMENTED AND CONTINUALLY
UPPING THE GAME, SO TO SPEAK, IN
TERMS OF HOW WE DO THIS.
I JUST THINK THAT MAYBE THE GOAL
OR CHALLENGE FOR ALL OF US IS TO
MAKE SURE THAT WE MAINTAIN THAT
COLLECTIVE COMMITMENT TO THE
ACTION BECAUSE WE CAN'T DO IT
ALONE.
WE HAVE TO DO THIS TOGETHER AND
THERE'S SO MANY WAYS THAT I SEE
THE INFRASTRUCTURE CHANGING FOR
SUCCESS.
SO I'M EXTREMELY HOPEFUL.
SORRY TO GO A LONG WAY THERE
BUT --
>> THAT'S OKAY.
IT'S NICE TO HEAR HOPE AND UP
SPIRATION.
LIZ AND THEN AL AND MYLYNDA.
>> I'LL JUST SAY I THINK THE
WORK HAS ALWAYS BEEN THERE AND
THE FACT IT'S GETTING NATIONAL
RECOGNITION GIVES ME GREAT HOPE.
I'VE BEEN DOING IT LONG ENOUGH
TO HAVE REMEMBERED IT BEING
DISMISSED AND I THINK WE HAVE
GAINED ENOUGH TRACTION AND
ATTENTION THAT IT'S BEING TAKEN
MUCH MORE SERIOUSLY AND I'M SO
DELIGHTED TO BE PART OF A PANEL
LIKE THIS OF PEOPLE WHO ARE
SERIOUS SCIENTISTS ABOUT THE
SCIENCE OF COMMUNITY ENGAGEMENT
AND I THINK WE'RE JUST GOING TO
SEE IT GROW FROM HERE.
AND I LOVE THAT PEOPLE ARE MORE
ENGAGED CIVICALLY,
SCIENTIFICALLY AND IN EVERY WAY.
I'LL KICK IT OVER TO MYLYNDA,
WHO IN -- INSPIRES ME DAILY, BY
THE WAY.
>> AL DO YOU WANT TO GO FIRST?
>> I'M MOST ENCOURAGED AND
HOPEFUL THAT WE WILL CONTINUE TO
SEE A RECOGNITION OF THE VALUE
OF COMMUNITY THAT IS ALSO
COUPLED WITH THE NECESSARY
SUPPORT.
FOR DR. COOK, I THINK AND THE
WORK YOU'RE DOING IN PARTICULAR,
THE FACT YOU CALLED OUT
COMPENSATION TO THE COMMUNITY
AND PATIENT GROUPS IS REALLY A
MAJOR STEP IN THE RIGHT
DIRECTION.
I THINK MOVING FORWARD I WOULD
LOVE TO SEE MORE OF THAT
EXPLICIT LANGUAGE.
I'M HOPEFUL THAT THAT BECAUSE
YOU DID IT, OTHERS WILL BEGIN TO
DO IT AS WELL.
>> SO MY -- LAST WORD.
>> MY LAST WORD ABOUT HOPE IS AL
RECENTLY VISITED PITTSBURGH AND
WE WERE ABLE TO ATTEND A
COMMUNITY EVENT AND TABLE
TOGETHER.
AND IF YOU ARE EVER DOWN ON YOUR
HOPE, GO BACK TO TABLING AND GET
TO A COMMUNITY ENGAGEMENT EVENT.
GET OUT THERE IN THE COMMUNITY.
IT REINVIGORATES MY HOPE EVERY
TIME AND REMINDS ME WHY WE GET
UP EVERY DAY AND WORK HARD TO DO
THIS.
IT'S JUST THE ABSOLUTE SOURCE OF
ALL INSPIRATION.
SO THAT'S MY HOPE.
>> THANK YOU ALL.
I KNOW WE'RE ONE MINUTE OVER BUT
I'M GOING TO GO AHEAD AND THANK
YOU ALL FOR JOINING.
WHAT AN AMAZING PANEL.
IT'S GOING TO BE VIDEOCAST AND
RECORDED SO PLEASE SHARE AS
WIDELY AS POSSIBLE AND I WILL AC
ACTUALLY LET GEORGE MENSAH HAVE
THE LAST WORD AND CLOSE US OUT.
DO YOU WANT TO SAY ANYTHING?
YOU'RE ON MUTE.
>> YOU SAID IT ALL.
THIS HAS BEEN OUTSTANDING.
THIS IS SUPERB.
THANK YOU AND OUT OF RESPECT FOR
YOUR TIME I'M GOING TO STOP
THERE.
THIS IS FANTASTIC SO THANK YOU.
>> THANK YOU VERY MUCH, ALL.
THIS WAS VERY WELL DONE.
THANK YOU SO MUCH FOR JOINING.
>> THANK YOU.
>> HAVE A GREAT DAY, EVERYONE.