>>GOOD MORNING, EVERYONE.
THIS IS LARISSA AVILES-SANTA,
THE DIRECTOR OF THE DIVISION OF
CLINICAL AND HEALTH SERVICES
RESEARCH AT NIMHD AND I'M VERY
GRAD THAT YOU ARE JOINING US FOR
THE SECOND DAY OF THIS UNIQUE
WORKSHOP.
I WILL PASS THE MICROPHONE TO MY
COLLEAGUE, DR. MICHELLE DOOSE.
>>MICHELLE DOOSE: GOOD MORNING.
WELCOME TO DAY 2.
I'M MICHELLE DOOSE, A PROGRAM
OFFICIAL HERE AT THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES.
IT IS AN HONOR TO BE HERE WITH
YOU TODAY AND I'M EXCITED TO GET
STARTED.
I WANTED TO COVER A COUPLE OF
HOUSEKEEPING ITEMS BEFORE WE GET
STARTED.
ALL TOPIC PRESENTATIONS HAVE
BEEN PRE RECORDED AND WILL BE
FOLLOWED BY A LIVE Q&A SESSION.
PLEASE SUBMIT YOUR QUESTIONS
THROUGHOUT THE DAY BY CLICKING
ON, SEND YOUR FEEDBACK, ON THE
NIH VIDEOCAST WEB PAGE.
THE WORKSHOP IS BEING RECORDED
AND WILL BE AVAILABLE SHORTLY
AFTER THE WORKSHOP.
SO, WITHOUT FURTHER DELAY, IT IS
MY PRIVILEGE TO START OUR NEXT
SESSION TO BE MODERATED BY
LARISSA AVILES-SANTA.
>>LARISSA AVILES-SANTA: GOOD
MORNING.
MY NAME IS LARISSA AVILES-SANTA.
I'M THE MODERATOR OF TOPIC 9 OF
OUR WORKSHOP.
BEST PRACTICES AND LESSONS
LEARNED.
EMBEDDING CLINICAL RESEARCH INTO
HEALTH CARE SETTINGS AND HEALTH
SERVICES RESEARCH.
OUR PANELISTS ARE, DR. TRAYVON
MARTIN, DR. WILMA PETERMAN,
DR. GUSTAVO GOSSLING AND
DR. PIECE PIECE.
AFTER THE PRESENTATIONS, WE WILL
HAVE A LIVE Q&A.
LET'S BEGIN.
>>HI, GOOD MORNING FROM MEXICO
CITY.
I WOULD LIKE TO START BY THANK
YOU FOR THE KIND INVITATION TO
PRESENT THE WORK OF THE
FOUNDATION IN THE ENGINEERING OF
DETECTION AND DISEASE MANAGEMENT
OF DIFFERENT NCDs IN CLINICS,
PARTICULARLY DIABETES, OBESITY
AND HYPERTENSION.
ALLOW ME TO START BY SHARING MY
SCREEN THAT I HAVE PREPARED FOR
THIS PRESENTATION.
SO THE WORK OF THE FOUNDATION IS
FOCUSED ON THE DESIGN AND
DEVELOPMENT OF SOLUTIONS TO
TACKLE THE MOST PRESSING PUBLIC
HEALTH PROBLEMS.
AND THESE PROBLEMS ARE
PARTICULARLY FOCUSED ON THREE
HEALTH AREAS, ON THE ONE HAND
NON-COMMUNICABLE DISEASES.
ON THE OTHER HAND IS MATERNAL
AND CHILD HEALTH AND ON THE
THIRD AREA IS IMMUNIZATION OF
VACCINATION.
THE WORK THAT I'M GOING TO
PRESENT TO YOU IS FOCUSED ON
NCDs IN PARTICULAR DIABETES,
OBESITY AND HYPERTENSION.
AT THE FOUNDATION, WE HAVE
DEVELOPED A STRATEGIC APPROACH
THAT IS COMPOSED OF THREE
DIFFERENT ELEMENTS.
ON THE ONE HAND THE PROCESS OF
ENGINEERING.
WE GO TO THE FIELD, WE
UNDERSTAND WHAT ARE THE
DIFFERENT BARRIERS, WHAT ARE THE
DIFFERENT PROBLEMS THAT HEALTH
PROFESSIONALS ARE FACING.
BASED ON THAT, WE DESIGN AND
DEVELOP NEW SOLUTIONS THAT CAN
HELP TACKLE THESE PROBLEMS.
ON THE OTHER HAND, WE WORK ON
THE STRENGTHENING OF
DECISION-MAKING USING AI AND
ANALYTICS.
OUR MODEL IS THAT THE DATA IS
NOT ONLY TO BE GENERATED BUT
ACTUALLY TO BE USED SO THAT
PEOPLE CAN MAKE BETTER DECISIONS
WITH THIS DATA.
OF COURSE THIS IMPLIES TEACHING
PEOPLE HOW TO USE AND INTERPRET
THIS DATA.
FINALLY, WE IMPLEMENT A
STRUCTURED ACCOMPANYING PROCESS
SO THROUGHOUT THE IMPLEMENTATION
AND THE OPERATION OF THE
DIFFERENT SOLUTIONS THAT I WILL
DESCRIBE, WE CAN WORK WITH THEM
IN IMPROVING THEM OR IN ADJU
ADJUSTING WHAT THEY ARE NEEDING.
ALLOW ME TO BEGIN WITH THE
PROCESS OF REENGINEERING.
WHEN WE STARTED ABOUT 12 YEARS
AGO, WE FIRST DID A MAP OF THE
PERSON'S JOURNEY THROUGH NCDC
DETECTION AND MANAGEMENT.
THIS IS WHAT WE CAME WITH.
THERE ARE FIVE DIFFERENT STEPS
IN THE PROCESS AND WE LOOKED AT
THE DIFFERENT POINTS THAT WERE
IMPEDING VERY OPTIMAL DISEASE
MANAGEMENT OR EVEN DETECTION
PROCESS.
SO AT FIRST THERE WAS A
PAPER-BASED PROCESS AND THE
FORMATS THAT WEREN'T BEING USED
WERE BEING OUTDATED AND THEY
WERE USING PHOTO COPIES WHICH
MOSTLY WERE BLURRED AND COULD
NOT BE READ IN A VERY EASY WAY.
ALSO, THE MEASUREMENTS THAT WERE
BEING DONE WERE RARELY IN ONE
SINGLE PHYSICAL SPACE.
UNFORTUNATELY, SOME OF THESE
DEVICES WERE SPREAD THROUGHOUT
THE CLINIC AND PEOPLE DID NOT
HAVE ACCESS, FOR EXAMPLE, TO
BLOOD STRIPS OR TO A LOU COM
TER.
THE OTHER THING IS THAT PEOPLE
WERE CLASSIFIED EITHER AS
HEALTHY OR WITH A DISEASE BUT
THEY WERE NOT LOOKING AT PEOPLE
WITH PRE-DISEASE STAGE, NAMELY
PRE-DIABETES, PRE-OBESITY OR
PRE-HYPERTENSION.
THE COUNSELING WAS POOR.
RESULTS OF THE ASSESSMENT WERE
NOT PROPERLY EXPLAINED AND
RECOMMENDATIONS WERE RARELY
PROVIDED BECAUSE PEOPLE WERE
ONLY FOCUSED ON TELLING THEM YOU
HAVE A DISEASE AND WE HAVE TO
BEGIN TREATMENT.
OR, YOU ARE OKAY AND YOU CAN GO
BACK HOME.
AND OF COURSE BECAUSE
RECOMMENDATIONS WERE RARELY
PROVIDED, FOLLOW-UP WAS ALSO
POOR AND DISEASE MANAGEMENT WAS
NOT PROVIDED NOT BECAUSE
SERVICES WERE NOT AVAILABLE BUT
BECAUSE PEOPLE SOMETIMES DIDN'T
UNDERSTAND WHAT NEEDED TO HAPPEN
AND THE PROCESS OF INCORPORATING
INTO SOMEONE INTO DISEASE
MANAGEMENT WAS SOMEHOW
BUREAUCRATIC.
SO THIS IS THE PERSON'S JOURNEY.
WHAT WE CAME UP WITH IN TRYING
TO SOLVE ONE OF THE -- EACH OF
THE COMPONENTS, WAS WE CAME UP
APPROXIMATE A DIGITAL PLATFORM
THAT OPERATES BOTH ON LINE AND
OFF LINE AND THIS PLATFORM HAS
EMBEDDED ALGORITHMS THAT SUPPORT
DECISION-MAKING IN THE FIELD SO
THAT HEALTH PROFESSIONALS CAN
UNDERSTAND BY PERFORMING THE
PROCESS, THEY CAN UNDERSTAND
WHAT IS NEEDED TO RECOMMEND OR
TO PRESCRIBE A BETTER TREATMENT.
WE MADE SURE THESE MEASUREMENTS
WERE IMPLEMENTED IN A SINGLE
PLACE.
AND WE CAME UP WITH AN ALL IN
ONE SOLUTION WITH TWO CASE
SCENARIOS.
A MOBILE CARTER BACKPACK -- AND
BOTH CAN BE USED AT A PUBLIC
SPACE, A SUBWAY STATION, OR A
MARKET OR THE PUBLIC PLAZA.
AND ON THE OTHER HAND, A PRIMARY
HEALTH CARE CLINIC.
THIS WAS SYSTEMATIC.
SO WE CAME UP WITH A PROCESS IN
WHICH YOU ID'D A PERSON,
PERFORMED ITS MEASUREMENTS, FILL
OUT THE QUESTIONNAIRE AND THEN
YOU PROVIDE THE COUNSELING BASED
ON THE RISK AND THEN FOLLOW-UP
SYSTEMATICALLY.
AND THIS PROFILING WAS ALSO VERY
IMPORTANT BECAUSE WE
INCORPORATED A PRE-DISEASE STAGE
SO WE FIRST STARTED IMPLEMENTING
PRE-DIABETES, PRE-HYPERTENSION
AND PRE-OBESITY.
WE DID NOT PROVIDE A DIFFERENT
RECOMMENDATION FOR OBESITY OR
DIABETES OR HYPERTENS.
WE MADE THESE THREE DETECTIONS
INTO ONE SINGLE RISK ASSESSMENT.
RISK PROFILES WERE THEN
CLASSIFIED INTO ONE OF 21 OF
THESE CATEGORIES AND
RECOMMENDATIONS WERE BASED ON
THESE.
AND THESE RECOMMENDATIONS WERE
DONE THROUGH COUNSELING.
AND I WOULD LIKE TO TAKE A MEANT
TO REALLY -- A MINUTE TO REALLY
EXPLAIN THE PURPOSE OF
COUNSELING BECAUSE TO ME, THIS
IS THE MOST IMPORTANT STEP OF
ALL.
BECAUSE COUNSELING IS REALLY
ABOUT EXPLAINING THE RESULTS TO
THE PERSON IN A VERY SIMPLIFIED
MANNER.
ONE OF THE MAJOR BARRIERS TO
HEALTH CARE THAT WE HAVE FOUND
IS THAT PEOPLE SOMETIMES DO NOT
UNDERSTAND THEIR DISEASE AND DO
NOT UNDERSTAND WHAT ARE THE
STEPS THAT THEY NEED TO TAKE IN
ORDER FOR THEM TO ACTUALLY BEGIN
TAKING CARE OF THEMSELVES.
SO WE PROVIDE THE COUNSELING IN
A VERY SIMPLIFIED WAY.
THEY CAN EITHER BE ACCOMPANIED
BY THE COUPLE OR BY THE MOM OR
BY HER SON, FOR EXAMPLE, BY HIS
SON, SO THEY CAN HAVE A BETTER
UNDERSTANDING OF THE DISEASE.
AND FINALLY, WE MAKE SURE THAT
FOLLOW-UP WAS SYSTEMATIC SO THAT
PEOPLE WHO WERE REFERRED FOR
DISEASE MANAGEMENT, WE MAKE SURE
THAT PEOPLE WERE STARTING TO
ACTUALLY BEGIN TREATMENT AND THE
OTHER THING IS THAT THE DATA WAS
THEN TRANSFERRED TO A SECOND
PLATFORM IN WHICH THEY CAN START
FOLLOWING UP PEOPLE LIVING WITH
DIABETES OR LIVING WITH
HYPERTENSION OR LIVING WITH
OBESITY, FOR EXAMPLE.
AND OF COURSE, ALSO FOLLOW-UP
WAS PROVIDED FOR PEOPLE WITH
PRE-DIABETES, PRE-HYPERTENSION
OR PRE-OBESITY.
SO IN SUM, THE REENGINEERING
PROCESS IS NAMED MIDO, THE TITLE
OF THE SESSION.
AND THESE FIVE COMPONENTS ARE
WHAT REALLY COMPOSE THE
STRATEGY, MIDO.
SO WE EVOLVED THE TRADITIONAL
PROCESS OF NCD DETECTION AND
MANAGEMENT TO WHAT I JUST
PRESENTED.
THE OTHER THING, AS I SAID, IS
THE STRENGTHENING OF
DECISION-MAKING, USE OF AI AND
ANALYTICS.
WHAT WE HAVE DONE IS, WE STARTED
WORKING WITH IN MAKING SURE THAT
WE COULD ACTUALLY TACKLE THE
MOST PRESSING PAIN POINTS IN THE
PROCESS.
FIRST, WE MADE SURE THAT THE
DIGITAL PLATFORM WAS
EVIDENCE-BASED.
SO FOR EXAMPLE, SOME OF THE
ALERTS IN THE DIFFERENT
VARIABLES ARE -- LET'SSADE YOU
HAVE YOUR GLUCOSE LEVELS ARE
HIGH.
SO THERE IS AN ALERT.
IT CAN BE RED OR ORANGE OR
YELLOW, DEPENDING OF COURSE ON
THE NUMBER.
BUT ALSO YOU CAN HAVE RISK
ASSESSMENT ALGORITHMS.
SO FOR EXAMPLE, WE STARTED USING
SOME OF THE MOST IMPORTANT RISK
SCALE FOR CARDIOVASCULAR
DISEASES.
AND OVER TIME, WE CAME UP WITH
OUR OWN SCALES, MOST OF THEM
AI-BASED, BECAUSE WE REALIZED
THAT WE NEEDED A PERSONALIZED
SCALE FOR MEXICAN POPULATION AND
ALSO FOR THE DIFFERENT RISK
PROFILES THAT I SHARED WITH YOU
BEFORE.
THE 21 PROFILES.
AND THE THIRD THING THAT WAS
VERY IMPORTANT WAS PERSONALIZED
RECOMMENDATIONS.
SO HEALTH PROFESSIONALS HAD
ACCESS TO THE DIFFERENT
RECOMMENDATIONS THAT THEY COULD
PRESCRIBE TO PATIENTS BASED ON
RESULTS.
THE OTHER THING IS THAT WE
CREATED SOME ACTION-ORIENTED
REPORTS.
I'M PRETTY SURE THIS HELPSINOUS
ALL OF OUR COUNTRIES IN LATIN
AMERICA, BUT PEOPLE IS VERY USED
TO REPORTING BUT THEY ARE NOT
ACTUALLY USED TO USING THE DATA.
AND WHAT WE FELT WAS IMPORTANT
WAS THAT WE NEEDED TO REALLY
SHIFT THAT CULTURE OF NOT ONLY
REPORTING BUT ACTUALLY USING THE
DATA.
SO FOR EXAMPLE, WE HAD A REPORT
ON ACCESS IN WHICH WE
ESTABLISHED THE PERCENTAGE OF
POPULATION THAT ACTUALLY HAS A
METER ASSESSMENT.
AND THEN WE HAD A REPORT ON
EFFICIENCY SO WE WANT TO MAKE
SURE THAT PEOPLE HAD A COMPLETE
ASSESSMENT.
LET'S SAY FOR EXAMPLE THAT YOU
DON'T HAVE A LOU COM TERAT THE
TIME, THEN WE DO NOT CONSIDER
THAT A METER ASSESSMENT BECAUSE
IT'S NOT COMPLETE.
AND OF COURSE THE THIRD ONE, AS
I HAVE BEEN SAYING, BEFORE WE
WANT TO MAKE SURE THAT PEOPLE
WHO WERE SCREENED AND WHO WERE
CONFIRMED WITH A DISEASE, THEY
CAN HAVE A FOLLOW-UP AND THEY
CAN BE INCORPORATED INTO
TREATMENT.
THE OTHER THING IS THAT WE HAVE
A ROBUST -- AND WE WORK WITH
DIFFERENT ORGANIZATIONS TO BUILD
A ROBUST BI PLATFORM.
WE HAVE A DISPLAY OF KPIs AT
DIFFERENT LEVELS.
PEOPLE CAN LOOK AT THEM FROM
PRIMARY HEALTH CARE CLINICS OR
REGIONS HERE IN MEXICO FROM
STATES OR PROVINCES AND AT THE
NATIONAL LEVEL.
AND DATA IS CONTINUOUSLY
UPDATED.
YOU CAN ACCESS IT ON THE MAP OR
THE DATA CAN BE ACCESSED DAILY.
AND PEOPLE WITH ACCESS, BECAUSE
THERE ARE SOME SPECIFIC LOCKS IN
THERE, THEY HAVE ACCESS TO
DATABASES AND THEY CAN ACCESS
THE NAMES SO THEY CAN FOLLOW-UP
WITH THE PEOPLE.
THE FOURTH ONE IS AI MODELING.
WE HAVE BEEN WORKING WITH THE
DATA AND WITH THE DIFFERENT
ORGANIZATIONS HERE AT THE PUBLIC
HEALTH SERVICES IN MEXICO TO
DESIGN DIFFERENT MODELS.
AIMED ON ONE HAND AT IMPROVING
FILTER SERVICES.
SO WE DESIGNED A PREDICTIVE
MODEL TO UNDERSTAND DIABETES
ONSET AND WE ARE ALSO NOW
WORKING ON THE DESIGN OF
PRESCRIPTIVE MODEL BASED ON THE
DIFFERENT TYPES OF TYPE II
DIABETES BECAUSE NOW WE KNOW
THAT THERE ARE FOUR DIFFERENT
TYPES OF TYPE II DIABETES BASED
ON INSULIN RESISTANCE, INSULIN
DEFICIENCY, AGE, OBESITY,
ET CETERA.
THE SECOND ONES ARE AIMED AT
IMPROVING QUALITY OF CARE.
SO WE DESIGNED A DIABETES
QUALITY OF CARE INDEX, WHICH IS
MAINLY FOCUSED ON DOING SOME
COMPARATIVE PERFORMANCE
ASSESSMENT SO YOU CAN HAVE A
SCORE FOR EACH OF THE CLINICS
AND THEY CAN COMPARE THEMSELVES
AND YOU CAN HAVE A SCORE FOR A
REGION AND STATE AND AT THE
NATIONAL LEVELS.
AND YOU CAN UNDERSTAND WHAT IS
THE QUALITY OF CARE OF THESE
DIFFERENT PUBLIC HEALTH
SERVICES.
AND FINALLY, THE DECISION-MAKING
ALSO, AS I SAID BEFORE, MEANT
SHIFTING THE CULTURE OF NOT ONLY
REPORTING BUT USING THE DATA.
SO WE HAVE ALSO CREATED VERY
PRACTICAL COURSES FOR PRIMARY
HEALTH CARE CLINIC WORKERS AND
ALSO FOR DECISION MAKERS SO THAT
THEY CAN STRENGTHEN THEIR
ANALYTICAL CAPACITY.
THIS IS VERY IMPORTANT BECAUSE
WE ARE LOOKING AT PEOPLE, AT
FIELD PROFESSIONALS WHO PERHAPS
HAVE BEEN WORKING FOR OVER 15-20
YEARS.
THEY ARE NOT USED TO USING THE
DATA.
MOST OF THEIR PROFESSIONAL LIVES
HAVE BEEN DEVOTED TO ONLY
REPORTING.
SO THIS IS VERY IMPORTANT FOR US
THAT THEY CAN UNDERSTAND WHAT WE
DO.
AND FINALLY, THE STRUCTURE
ACCOMPANYING PROCESS.
WE HAVE -- OUR GOAL IS TO
IMPLEMENT A DIGITAL LEARNING
MANAGEMENT SYSTEM.
SO WE DEPLOYED TWO TEAMS, BOTH
IN OPERATIONS AND ANALYTICS.
AND WHAT IS OUR FOCUS?
WE WANT TO IMPLEMENT THE
SYSTEMATIC IMPROVEMENT PROCESS.
SO WE WANT TO MAKE SURE THAT
THERE AREN'T ANY BARRIERS
THROUGHOUT THE IMPLEMENTATION OR
THROUGHOUT THE USE OF THE DATA.
AND WE ACCOMPANY THESE WITH
CONTINUOUS MEDICAL EDUCATION.
WE ARE CONSTANTLY UPDATING THE
ALGORITHMS BASED ON EITHER THE
GUIDELINES FOR BEST PRACTICES,
AND WE ARE ALSO INCORPORATING
THIS AS NEW SOLUTIONS OR
INNOVATIONS.
AND FINALLY, YOU ALWAYS WANT TO
DOCUMENT THE BENEFITS OF MIDO
THROUGH DIFFERENT PUBLIC,
SCIENTIFIC PUBLICATIONS AND
PRESENTATIONS AND CONFERENCES
AND SEMINARS.
TO FINALIZE, LET ME SHOW YOU
SOME DATA.
TO DATE, WE HAVE PERFORMED --
PUBLIC SERVICES HAS PERFORMED
2.7 MILLION MIDO ASSESSMENTS.
WE HAVE BEEN WORKING WITH PUBLIC
HEALTH ENTITIES WITH NATIONAL
INSTITUTES OF HEALTH WITH
ACADEMIC INSTITUTIONS.
AND YOU CAN LOOK AT THE DATA AND
YOU'LL SEE THAT THERE IS A
FAMILY HISTORY, PEOPLE ARE
SMOKING.
PEOPLE DO NOT HAVE HEALTHY SLEEP
HABITS OR THEY HAVE A SEDENTARY
LIFESTYLE.
AND OF COURSE THERE IS A REALLY
WINDOW OF OPPORTUNITY FOR PEOPLE
WITH PRE DISEASES AS YOU CAN SEE
WITH PRE-OBESITY,
PRE-HYPERTENSIONS AND
PRE-DEBITIES.
AND CURRENTLY THIS IS THE
OFFICIAL HEALTH INFORMATION
SYSTEM FOR PUBLIC HEALTH
CLINICS.
TO DATE, WE KNOW THAT ONE.7
MILLION PEOPLE IS BEING TAKEN
CARE OF AT THESE CLINICS.
AND YOU CAN LOOK AT THE DATA AND
YOU HAVE PEOPLE LIVING WITH
DIABETES, HYPERTENSION, OBESITY
AND OF COURSE THIS GIVES ROOM TO
LOOKING AT METABOLIC SYNDROME OR
CARDIOMETABOLIC SYNDROME.
IN SUM, THE WORD OF THE
FOUNDATION IS HOW TO STRENGTHEN
PRIMARY CARE FOR BOTH DETECTION
AND DISEASE MANAGEMENT PROCESS.
I THANK YOU THE OPPORTUNITY AND
I WELCOME YOUR QUESTIONS.
THANK YOU VERY MUCH.
>>HELLO.
IT GIVES ME GREAT PLEASURE TO BE
ABLE TO SPEAK WITH ALL OF YOU
TODAY ABOUT THIS PARTICULAR
TOPIC.
BECAUSE IT REALLY TOUCHES SOME
OF THE THEMES THAT HAVE BEEN
VERY CENTRAL TO MY OWN WORK WITH
HISPANIC AND LATINO POPULATIONS,
NOW FOR OVER 15 YEARS.
HOW DO WE HELP CASH-STRAPPED OR
UNDERFUNDED SAFETY NET HEALTH
CARE SYSTEMS IMPROVE SERVICES
FOR POPULATIONS THAT HAVE
DIFFICULTY ACCESSING CARE?
AND IT'S ALSO A REAL PLEASURE TO
BE SPEAKING WITH YOU TODAY ABOUT
THIS TOPIC BECAUSE WE LIKE TO
THINK THAT WE HAVE COME ACROSS A
COUPLE OF DIRECTIONS TO TAKE
THIS RESEARCH THAT ARE REALLY
QUITE PROMISING, THAT ARE REALLY
STARTING TO BEAR FRUIT AND WE
ARE EXCITED TO SHARE WITH YOU
SOME OF THOSE SUCCESSES AND SOME
OF THE DIRECTIONS WE'D LIKE TO
TAKE THAT WORK IN THE COMING
YEARS.
THE WORK I'M GOING TO BE TALKING
WITH YOU ABOUT MAYBE BEGINS IN A
SOMEWHAT UNLIKELY PLACE.
I ALSO HAPPEN TO BE AN
INVESTIGATOR WITH THE U.S.
DEPARTMENT OF VETERAN'S AFFAIRS
HEALTH CARE SYSTEM.
MANY OF YOU ARE PROBABLY
FAMILIAR, THE V.A. IS A LARGE
NATIONAL SAFETY NET HEALTH CARE
SYSTEM.
IT TREATS 7-8 MILLION PATIENTS
THAT ARE LOW-INCOME, HIGH
PREVALENCE OF SUBSTANCE ABUSE
DISORDERS, MENTAL HEALTH
CO-MORBIDITY AND DIFFICULT TO
ACCESS IN CARE.
LIKE MANY HEALTH CARE SYSTEMS,
THE V.A. EMPHASIZES
EVIDENCE-BASED TREATMENT
PRACTICES.
ONE OF THOSE TREATMENT PRACTICES
IS COGNITIVE BEHAVIORAL THERAPY.
CBT IS A PRACTICE THROUGH WHICH
WE WORK WITH PATIENTS TO MODIFY
THEIR SYMPTOMS, TO IMPROVE THEIR
FUNCTIONING AND IMPROVE THEIR
MENTAL HEALTH.
WE DO THAT BY HELPING THEM
UNDERSTAND THEIR THINKING
PROCESS, SOME OF THEIR THOUGHT
PROCESSES THAT MIGHT NOT BE VERY
PRODUCTIVE, THAT ARE HOLDING
THEM BACK.
HELPING THEM ADJUST THEIR
BEHAVIORS AND REACH BEHAVIORAL
GOALS AROUND SUBSTANCE ABUSE OR
SLEEP OR RELAXATION.
AND REALLY TO SEE THE
CONNECTIONS BETWEEN THEIR
THINKING, THEIR BEHAVIOR, THEIR
EMOTIONS AND THEIR PHYSICAL
REACTIONS.
CBT IS THE GO-TO TREATMENT FOR
MANY, MANY CONDITIONS.
IT'S THE GO-TO TREATMENT FOR
DEPRESSION, FOR ANXIETY, FOR
POST-TRAUMATIC STRESS DISORDER,
FOR SYMPTOMS OF FIBROMYALGIA OR
MENOPAUSE, FOR MIGRAINE
HEADACHES, FOR SUBSTANCE ABUSE.
FOR MANY, MANY CONDITIONS.
AND HERE YOU SEE A TYPICAL CBT
PROGRAM FOR PATIENTS WITH
CHRONIC PAIN.
FOR CHRONIC PAIN PATIENTS YOU
CAN SEE WE WORK WITH PATIENTS
OVER IN THIS CASE, A SERIES OF
10 WEEKLY SESSIONS.
SESSIONS USUALLY LAST ABOUT 45
MINUTES.
AND PATIENTS LEARN TO MODIFY
THEIR PHYSICAL ACTIVITY,
HOPEFULLY BE MORE ACTIVE, START
A WALKING PROGRAM, MAYBE LEARN
TO RELAX WHEN THEY ARE
EXPERIENCING PAIN.
LEARN TO MODIFY THEIR SLEEP,
MAYBE MODULATE THEIR CONSUMPTION
OF ALCOHOL.
AND I CAN'T EMPHASIZE ENOUGH,
CBT PROGRAMS FOR CHRONIC PAIN
AND OTHER PROGRAMS WORK.
THEY ARE VERY, VERY EFFECTIVE
IMPROVING PATIENT SYMPTOMS
PROFILE AND ALSO IMPROVING THEIR
FUNCTIONING.
SO WHAT IS THE PROBLEM?
WELL, MANY PATIENTS DON'T GET
EVIDENCE-BASED CBT PRACTICES AND
SESSIONS ARE REALLY QUITE
BURDENSOME FOR PATIENTS.
PATIENTS MIGHT HAVE
TRANSPORTATION PROBLEMS.
THEY HAVE CONFLICTS WITH WORK
SCHEDULES, WITH CHILD CARE
RESPONSIBILITIES.
AND PATIENTS AREN'T WELL.
I MEAN, THEY FEEL PHYSICALLY
ILL.
THEY MIGHT HAVE MOBILITY ISSUES.
EVEN WHEN PATIENTS ARE ABLE AND
WILLING TO COME TO CBT, SADLY,
MANY HEALTH CARE SYSTEMS
INCLUDING SAFETY NET HEALTH CARE
SYSTEMS FOR HISPANIC/LATINO
PEOPLE DON'T HAVE THE RESOURCES
TO PROVIDE THIS INTENSITY OF
SERVICES.
THE THERAPISTS ARE SCARCE.
THEY NEED SPECIALIZED TRAINING.
THEY NEED REGULAR SUPERVISION
AND REIMBURSEMENT IS OFTEN
INADEQUATE.
PATIENTS MIGHT HAVE TO PAY
OUT-OF-POCKET AND MIGHT NOT BE
ABLE TO MAKE THOSE PAYMENTS.
THIS IS IMPORTANT IN ITS OWN
RIGHT; BUT IT'S ALSO VERY MUCH
AN EXEMPLAR OF A MUCH MORE
GENERAL COMMON PROBLEM THAT
EFFECTS THE CARE OF HISPANIC AND
LATINO PEOPLE.
AND THAT IS THAT AFTER 20 YEARS
OF GREAT ADVANCES IN BEHAVIORAL
SCIENCE, WE KNOW WHAT WORKS TO
HELP PATIENTS TO BE BETTER BUT
THE SERVICES THAT WE IDENTIFIED
AREN'T SIMPLY NOT AVAILABLE
BECAUSE THEY ARE TOO
LABOR-INTENSIVE AND TOO COSTLY
AND TOO COMPLEX.
HOW DO WE GET THESE
EVIDENCE-BASED PRACTICES INTO
REAL-WORLD CLINICS AND HEALTH
SYSTEMS?
THAT IS REALLY THE FIRST
CHALLENGE THAT WE HAVE BEEN
FOCUSING ON FOR A NUMBER OF
YEARS.
WITH RESPECT TO CBT PROGRAMS, WE
THINK THAT WE HAVE IDENTIFIED
ONE WAY TO DO JUST THAT.
AS I EXPLAINED, ONE MODEL OF CBT
WOULD BE 10 WEEKLY CBT SESSIONS.
IN THIS CASE, FOR CHRONIC PAIN.
BUT IF YOU LOOK CLOSELY AT
PATIENTS IN A CBT PROGRAM FOR
CHRONIC PAIN OR SOME OTHER
HIGH-SYMPTOM CONDITION, WHAT YOU
SEE IS THAT AFTER THREE WEEKS OR
FOUR WEEKS OR SIX WEEKS, A
SIGNIFICANT NUMBER OF THOSE
PATIENTS HAVE ACHIEVED THEIR
GOALS.
THEIR SYMPTOMS ARE BETTER.
THEY MADE BEHAVIORAL CHANGES.
SO IF WE CAN IDENTIFY WHICH OF
THE PATIENTS THAT REALLY NEED
MORE INTENSIVE FOLLOW-UP, AND
WHICH PATIENTS MIGHT BE OKAY
WITH SOME LESSER -- LESS
INTENSIVE FORM OF TREATMENT, WE
POTENTIALLY COULD GET ALL
PATIENTS TO DRAMATICALLY THE
COST.
WE DID THAT IN THIS TRIAL.
WE REALLY RECENTLY PUBLISHED
THIS STUDY.
IT'S GOTTEN A LOT OF ATTENTION.
IT WAS PUBLISHED IN JEMAAH
INTERNAL MEDICINE.
THIS WAS A RANDOMIZED
COMPARATIVE EFFECTIVENESS TRIAL
FOR CBT CHRONIC PAIN IN THE V.A.
HEALTH CARE SYSTEM.
THE CONTROL GROUP PATIENTS
RECEIVED THE STANDARD 10-SESSION
COURSE OF TELEPHONE CBT.
FOR PATIENTS IN THE INTERVENTION
GROUP, AN ARTIFICIAL
INTELLIGENCE ENGINE, WE CALL IT,
SPECIFICALLY SOMETHING CALLED
REINFORCEMENT LEARNING -- WAS
MAKING CHOICES EACH WEEK ABOUT
HOW INTENSIVE PATIENTS NEEDED TO
BE ATTENDED TO TO GET TO THEIR
GOAL.
SO, IN VERY BRIEF T WORKS
SOMETHING LIKE THIS: WE HOPE IT
WORKED LIKE A GOOD CLINICIAN
LEARNING FROM EXPERIENCE WITH
HIS OR HER PATIENTS HOW TO
PERSONALIZE TREATMENT IN A WAY
THAT GETS PATIENTS QUICKLY TO
GOAL AND MEETS WITH THEIR
PARTICULAR LIMITATIONS AND
PREFERENCES.
SPECIFICALLY IN THIS PROGRAM,
WHAT HAPPENED WAS, THAT THE AI
PROGRAM WOULD MAKE A CHOICE EACH
WEEK FOR EACH PATIENT DURING
THEIR 10 WEEKS WHETHER THEY
NEEDED A 45-MINUTE SESSION WITH
A THERAPIST, WHETHER A 15-MINUTE
BOOSTER SESSION MIGHT BE ENOUGH,
OR WHETHER THE PATIENT COULD
SIMPLY GET SUPPORT BY SOME
DIGITAL TOOL.
SO SOMETHING FAR LESS INTENSIVE
WITH RESPECT TO THERAPIST TIME.
HOW WAS THE PROGRAM LEARNING TO
MAKE THESE DECISIONS?
WELL, LIKE A GOOD CLINICIAN, IT
WAS LEARNING FROM EXPERIENCE.
IT WAS LEARNING FROM MAKING
THESE DECISIONS AND WATCHING
PATIENTS CAREFULLY.
IN THIS PARTICULAR TRIAL,
PATIENTS WERE PROVIDING REGULAR
FEEDBACK ABOUT THE INTENSITY OF
THEIR PAIN, THEIR SLEEP, THEIR
FUNCTIONAL MOBILITY, THEIR
PRACTICE OF CBT SKILLS AND OTHER
INFORMATION, AND THE AI PROGRAM
ALSO HAD OTHER INFORMATION ABOUT
THAT PERSON.
SO IT COULD PERSONALIZE THESE
DECISIONS IN CASE THAT TREATMENT
WAS MORE NEEDED FOR SOME SORTS
OF PATIENTS, MAYBE OLDER
PATIENTS OR PATIENTS THAT HAD
CO-MORBID MENTAL HEALTH
PROBLEMS.
AND VERY BRIEF, THAT'S HOW THIS
AI-SUPPORTED PROGRAM OF CBT WAS
WORKING.
WHAT WE FOUND IN THIS
COMPARATIVE EFFECTIVENESS TRIAL,
WHEN PATIENTS RECEIVED THIS MODE
OF CBT, THEY ACHIEVED OUTCOMES
AT LEAST AS GOOD AS STANDARD
CARE, AS STANDARD 10 SESSIONS
WITH A THERAPIST.
BUT THE EXCITING PART WAS THAT
THE AI-SUPPORTED PROGRAM
INCREASED THE NUMBER OF WEEKS IN
WHICH THEY HAD CONTACT WHILE
USING LESS THAN HALF OF THE
THERAPIST'S TIME.
SO IN THEORY, THIS WOULD MEAN
THAT YOU COULD TREAT TWICE AS
MANY PATIENTS WITH THE SAME
LIMITED NUMBER OF THERAPISTS.
WE BELIEVE THIS HAS GREAT
IMPLICATIONS FOR HOW WE CAN
EXTEND ACCESS TO EVIDENCE-BASED
PROGRAMS LIKE CBT, FOR PEOPLE
THAT ARE HISPANIC OR LATINO.
AND WE ARE PURSUING A FOLLOW-UP
OF THIS PARTICULAR MODEL OF CARE
WITH HEALTH SYSTEMS AND
COMMUNITY PARTNERS IN THE
COUNTRY OF HONDURAS.
IN THAT COUNTRY, LIKE IN MANY OF
OUR CONVERSATIONS WITH THE
COMMUNITY PARTNERS IN COUNTRIES
OF LATIN AMERICA, WHAT WE HAVE
HEARD IS THAT A PRIORITY IS
VIOLENCE AND SPECIFICALLY THE
WAY IN WHICH VIOLENCE IS CAUSING
DEPRESSION, ANXIETY AND
POST-TRAUMATIC STRESS FOR WOMEN.
SO THIS IS A PROJECT THAT IS
FOCUSED ON CBT FOR WOMEN THAT
HAVE EXPERIENCED VIOLENCE AND
HAVE THESE PARTICULAR PROBLEMS
WITH THEIR MOOD.
GOOD NEWS IS THAT CBT WORKS FOR
THOSE DISORDERS AND BECAUSE WE
ARE ADDRESSING HEALTH SYSTEM
PRIORITIES, THIS PROJECT HAS
GREAT ENTHUSIASM FROM THE
LARGEST PSYCHIATRIC HOSPITAL IN
THE CAPITAL OF HONDURAS AS WELL
AS FROM THE NATIONAL SECRETARY
OF HEALTH IN THAT COUNTRY.
AND WE ARE WORKING WITH REALLY
STRONG COMMUNITY PARTNERS
REPRESENTING WOMEN WHO ARE AT
RISK OR HAVE EXPERIENCED OR HAVE
BEEN THE VICTIMS OF VIOLENCE AND
EXPERIENCED MENTAL HEALTH
PROBLEMS.
AND THE FOUNDATION IS A
COMMUNITY-BASED ORGANIZATION IN
HON DUR US WORKING WITH US THAT
REPRESENTS CONSUMERS.
PEOPLE THAT EXPERIENCE MENTAL
HEALTH PROBLEMS.
SO THAT'S ONE DIRECTION WE ARE
TAKING THIS WORK THAT I THINK
HAS GREAT RELEVANCE FOR
HISPANIC/LATINO POPULATIONS.
ANOTHER ISSUE THAT WE ARE REALLY
TACKLING WITH HEALTH SYSTEMS IS
THIS: IN FORTUNATELY, WE KNOW
THAT WHEN HISPANIC AND LATINO
PATIENTS COME IN CONTACT WITH
HEALTH CARE PROVIDERS, THEY ARE
NOT ALWAYS HAVING THE QUALITY OF
INTERACTION THAT WOULD BE
IMPORTANT TO BUILD A TRUSTING
CLINICAL RELATIONSHIP THAT WOULD
ALLOW THE PATIENT TO REPORT HOW
THEY ARE DOING AND THAT WOULD
MAKE THEM INTERESTED IN
FOLLOWING UP WITH TREATMENT AND
REACHING THEIR BEHAVIORAL GOALS.
WE SEE THIS RECENTLY IN THIS
STUDY, WHICH I RECENTLY CAME
ACROSS CONFIRMING SOMETHING WE
KNOW, THAT WE HEAR FROM HEALTH
SYSTEMS IN THE U.S. AND LATIN
AMERICA.
MANY PATIENTS FEEL INHIBITED IN
TALKING WITH PROVIDERS.
THEY MIGHT SIMPLY NOT HAVE THE
TIME IN THESE VERY, VERY BRIEF
ENCOUNTERS WITH PROVIDERS TO
SHARE THEIR STORY, TO SHARE
THEIR CONCERNS, TO ASK
QUESTIONS, ET CETERA.
THE GOOD NEWS IS, THAT JUST LIKE
WITH EVIDENCE-BASED CBT
PROGRAMS, WE KNOW HOW TO MAKE
COMMUNICATION AND HEALTH CARE
SYSTEMS BETTER.
THAT'S THROUGH SOMETHING CALLED
MOTIVATIONAL INTERVIEWING WHERE
WE CAN TEACH PROVIDERS TO BE
MORE EMPATHETIC, TO GIVE
PATIENTS THE SPACE TO TALK, TO
REALLY AFFIRM PATIENT'S
STRUGGLES AND THEIR SUCCESSES AS
LIMITED AS THEY MAY BE.
MOTIVATIONAL INTERVIEWING WORKS
BUT JUST LIKE WITH CBT, WE SEE
THE SAME CHALLENGES THAT WE KNOW
WHAT WORKS BUT THE
IMPLEMENTATION OF A PROGRAM OF
TRAINING PROVIDERS WITH
MOTIVATIONAL INTERVIEWING
TECHNIQUES IS QUITE
LABOR-INTENSIVE.
YOU NEED SPECIALISTS IN THAT
AREA.
PROVIDERS OFTEN NEED BOOSTERS.
THEY NEED FOLLOW-UP.
THEY NEED SUPERVISION.
SO OUR CHALLENGE IS, HOW CAN WE
MAKE SURE THAT HEALTH CARE
PROFESSIONALS COMMUNICATE WITH
HISPANIC AND LATINO PEOPLE IN
WAYS THAT ARE RESPECTFUL AND
SUPPORT POSITIVE OUTCOMES?
IT TURNS OUT THAT WE ARE DOING
THAT WITH ANOTHER FORM OF
ARTIFICIAL INTELLIGENCE AND THIS
IS A FIELD OF ARTIFICIAL
INTELLIGENCE THAT YOU MAY HAVE
HEARD OF IT'S CALLED NATURAL
LANGUAGE PROCESSING.
IF YOU HAVE INTERACTED WITH
SIRI, OR YOU HAVE USED SOME
SPEECH-TO-TEXT PROGRAM OR A CHAT
BOT, THAT IS NLP, NATURAL
LANGUAGE PROCESSING.
AND THAT IS A WAY THAT WE CAN
TEACH COMPUTERS TO LISTEN TO
HUMAN CONVERSATIONS AND GIVE
SCORES AMONG OTHER THINGS.
I MEAN IT CAN RATE THE
CONVERSATION, UNDERSTAND AT SOME
LEVEL WHAT IS HAPPENING.
ONE SIMPLE THING THAT WE CAN
TEACH AN NLP PROGRAM TO DO IS TO
GIVE FEEDBACK ON WHAT PROPORTION
OF THE TIME IN THE
CLINICIAN/PATIENT RELATIONSHIP,
THE PROVIDER IS TALKING VERSUS
THE PATIENT.
SO SOMETHING THAT WOULD BE
FRANKLY NOT VERY HELPFUL IS WE
HAVE A CLINICIAN-DOMINATED
INTERACTION WITH PROVIDERS DOING
ALL THE TALKING AND THE PATIENT
IS NOT TALKING AT ALL.
THAT IS AN INTERACTION THAT IS
LESS LIKELY TO RESULT IN
POSITIVE PATIENT OUTCOMES.
REALLY HOPING THAT WE HAVE A
MORE EGAL TARYN INTERACTION SO
WE COULD TEACH AN NLP PROGRAM TO
LISTEN TO RECORDINGS OF
CONVERSATIONS AND GIVE PROVIDERS
AND HEALTH SYSTEMS FEEDBACK
ABOUT WHAT IS ACTUALLY HAPPENING
INTERACTIONS SO IT IS CORRECTIVE
FEEDBACK.
THEY CAN USE THIS INFORMATION IN
TRAINING ON MORE EFFECTIVE
COMMUNICATION STRATEGIES TO DO A
BETTER JOB AND IMPROVE THEIR
RELATIONSHIPS WITH PATIENTS AND
PATIENT OUTCOMES.
WE THINK THIS HAS A LOT OF
IMPORTANT IMPLICATIONS.
WE ARE WORKING WITH HEALTH
SYSTEMS IN MEXICO AND HONDURAS
TO TRAIN NLP PROGRAMS TO DO JUST
THAT, SPECIFICALLY FOR
SPANISH-SPEAKING PATIENTS.
AND WE HOPE TO DEVELOP SYSTEMS
THAT WILL ALLOW US TO UNDERSTAND
BETTER WHETHER CLINICIANS ARE
MORE LIKELY TO USE NEGATIVE
COMMUNICATION STYLES WITH SOME
OF THEIR PATIENTS THAN WITH
OTHERS.
WHICH OF THE CLINICIANS ARE
STRUGGLING MOST WITH
COMMUNICATION WITH THEIR
PATIENTS?
IS IT CLINICIANS THAT HAVE LESS
FAMILIARITY WITH HISPANIC
POPULATIONS OR AREN'T AS
COMFORTABLE SPEAKING SPANISH?
WHO ARE THE CLINICIANS WE NEED
TO TARGET WITH CORRECTIVE
TRAINING AND FOLLOW-UP?
WHAT ARE THE OUTCOMES THAT ARE
AFFECTED BY THIS COMMUNICATION?
I MEAN MY HYPOTHESES IS THAT
FOLLOW UM RATES, NO SHOW RATES,
HEALTH OUTCOMES MIGHT BE
IMPACTED BY THESE NEGATIVE
COMMUNICATION STYLES WE NOW WILL
BE ABLE TO MEASURE.
AND MOST IMPORTANTLY, HOW CAN WE
HELP?
HOW CAN WE HELP CLINICIANS AND
HEALTH SYSTEMS UNDERSTAND WHAT
IS HAPPENING WITH THEIR
PROVIDERS AND WITH THEIR
PROVIDER PATIENT COMMUNICATION
AND DO A BETTER JOB?
>>MY NAME IS --OON COLGIST FROM
BRAZIL.
HAPPY TO BE HERE PRESENTING TO
YOU THIS PRESENTATION THAT IS
ENTITLED FOSTERING CLINICAL
CANCER RESEARCH IN LATIN
AMERICA.
WHY AND HOW?
THESE ARE MY DISCLOSURES.
FIRST OF ALL, THE WHY.
THIS IS WHY YOU CAN SEE THE
GLOBAL DISTRIBUTION OF CLINICAL
TRIALS AND YOU CAN SEE A VERY
THIN LINE OF BLUE.
THERE IS LATIN AMERICA.
SO THIS VERY THIN LAYER IS THE
PROPORTION OF REGISTERED
CLINICAL TRIALS THAT ARE
CONDUCTED IN LATIN AMERICA IN
PROPORTION TO WHAT IS CONDUCTED
IN NORTH AMERICA OR EUROPE OR
MORE RECENTLY, ASIA, AS YOU CAN
SEE.
WE HAVE A VERY SMALL MARKET
SHARE OF CLINICAL TRIALS IN THE
WORLD.
YOU CAN SEE THIS MARKED CLEARLY
HERE IN THIS MAP WHERE YOU CAN
SEE THAT WE HAVE APPROXIMATELY
5.2% OF CLINICAL TRIALS AND THAT
WAS TAKEN AT THE END OF AUGUST,
SO THIS IS VERY RECENT.
ADDITIONALLY LATIN AMERICA IS
QUITE A LARGE PHARMACEUTICAL
MARKET SIZE.
YOU CAN SEE THAT BRAZIL IS
ESTIMATED TO BE THE FIFTH
LARGEST MARKET SIZE IN 2023.
IN THAT LIST THAT ALSO HAS THE
20 LARGEST MARKET SIZE EXPECTED
TO BE IN 2023, WE WILL ALSO SEE
MEXICO.
REGARDING RESEARCH AND
DEVELOPMENT INVESTMENT, WE CAN
SEE THAT THE GLOBAL
DISTRIBUTION -- USUALLY THERE IS
A PREDOMINANCE OF PRIVATE
INVESTMENTS FOR RESEARCH AND
DEVELOPMENT.
BUT, IN THE SOUTH AMERICA, YOU
CAN SEE THAT PRIVATE INVESTMENT
IS NOT AS LARGE AS IT IS IN
EUROPE OR AS IT IS IN NORTH
AMERICA.
SO, THIS SUGGESTS THAT PRIVATE
INVESTMENT IS DISPROPORTIONATELY
LOW IN SOUTH AMERICA AND OTHER
PARTS OF THE WORLDCOM PAIRED TO
EUROPE AND NORTH AMERICA.
HOWEVER, WE CAN SEE THAT PUBLIC
INVESTMENT IN RESEARCH AND
DEVELOPMENT IS NOT AS LARGE IN
LATIN AMERICA AND THE SCRIBBIAN
AS IT IS IN EUROPE AND NORTH
AMERICA -- AND THE CARIBBEAN --
WHERE IT USUALLY RANGES BETWEEN
2-4% OF THE GDP.
AND IN LATIN AMERICA THE HIGHEST
IS BRAZIL, 1.1% OF GDP AND THE
OTHER COUNTRIES IN LATIN
AMERICA, THE CARIBBEAN ARE
REASONABLY LESS THAN THAT.
CONSIDERING THAT, I THINK WE DO
HAVE SOME SHARP CONCLUSIONS
HERE.
THE FIRST ONE IS THAT LATIN
AMERICA IS SERIOUSLY
UNDERREPRESENTED IN CLINICAL
TRIALS AND THIS LEADS TO OTHER
CONCLUSIONS.
ARE THE RESULTS FROM OTHER
POPULATIONS VALID FOR LATIN
AMERICA?
OR CAN WE EXPECT A DIFFERENT
BEHAVIOR FROM DISEASES FOR
LATIN-AMERICAN POPULATION?
I THINK THIS COULD BE DISCUSSED
IN ONE BY ONE BASIS ON TRIALS.
AND THERE IS ALSO SOMETHING VERY
IMPORTANT THAT AS LATIN AMERICA
HAS A GREAT REPUTATION FOR
DEVELOPMENT OF CLINICAL TRIALS.
AS RESEARCH AND DEVELOPMENT IS
SERIOUSLY UNDERFUNDED IN LATIN
AMERICA BY BOTH PRIVATE AND
PUBLIC SECTORS.
AND THIS IS INFORMATION THAT IS
VERY IMPORTANT.
IT'S VERY FREQUENT THAT STANDARD
OF CARE TREATMENTS CONSIDERED AT
EUROPE OR AT UNITED STATES ARE
NOT AVAILABLE FOR PATIENTS IN
THE PUBLIC HEALTH SYSTEMS IN
LATIN AMERICA.
SO THIS POSES BOTH A CHALLENGE
AND AN OPPORTUNITY FOR CLINICAL
TRIALS BECAUSE WE CAN ENROLL
PATIENTS AND PROPOSE THEM THE
STANDARD OF CARE.
HOWEVER FOR TRIALS THAT NEED
STANDARD OF CARE TO ALSO HAVE
BEEN PERFORMED, THIS POSES A
SIGNIFICANT CHALLENGE AT LEAST
IN THE -- NOT THAT WELL-FUNDED
PARTS OF THE COUNTRIES.
CONSIDERING WHAT I TOLD YOU
BEFORE, I LIKE TO PRESENT YOU TO
THE LATIN-AMERICAN ONCOLOGY
GROUP.
A NONPROFIT RESEARCH INSTITUTION
THAT IS DEDICATED TO PROMOTE
CANCER RESEARCH IN LATIN
AMERICA.
WE DID HAVE PARTNERS AND SOME
VERY LARGE PARTNERS.
AND WE DO PROMOTE, CONDUCT,
DEVELOP, RESEARCH IN LATIN
AMERICA.
LACOG HAS MORE THAN 400 MEMBERS
IN 16 COUNTRIES THAT PRESENT
MORE THAN 200 HOSPITALS IN LATIN
AMERICA.
SO HOW CAN LACOG PROMOTE
CLINICAL CANCER RESEARCH IN
LATIN AMERICA?
THE FIRST STEP IS SPONSORING
INVESTIGATOR IN THE TRIALS.
ONE OF OUR MEMBERS THAT WANTS TO
DEVELOP A CLINICAL TRIAL, HE
COMES UP WITH AN IDEA AND THEN
THIS IDEA IS PRESENTED TO US AND
WE CREATE THE CONCEPT.
WE PLAN THE TRIAL, INCLUDING
STATISTICS, STATISTICAL ANALYSIS
PLAN.
WE DEVELOP THE PROTOCOL.
WE GET THE FUNDING.
WE LOOK FOR THE FUNDING, AND WE
DO THE ETHICAL PROCESSES IN ALL
COUNTRIES.
AND THEN THE TRIAL FINALLY GOES,
WORKS AND WE GET THE RESULTS AND
WE PUBLISH THEM AND WE HELP THE
INVESTIGATORS TO PUBLISH THEM.
SO THIS IS THE FIRST AND MOST
IMPORTANT IDEA OF LACOG, THAT IS
MAKING A STRUCTURE THAT MAKES
CLINICAL CANCER RESEARCH IN
MULTICENTER TRIALS FOR LATIN
AMERICA AND IN LATIN AMERICA,
WORK.
SO THIS IS JUST AN EXAMPLE OF
THE PROCESS I JUST MENTIONED TO
YOU.
THIS TRIAL WAS DEVELOPED BY
PRINCIPAL INVESTIGATOR WHO CAME
UP WITH THE IDEA AND HE BROUGHT
US THE CONCEPT.
WE DEVELOPED A TRIAL.
WE HELPED HIM TO MAKE THE
PROTOCOL AND THIS TRIAL
SPECIFICALLY WAS HAPPILY
PRESENTED AT 2020ASCO MEETING.
THIS IS WHY LACOG DOES WHAT IT
DOES IT'S FOR PROMOTING CANCER
RESEARCH IN LATIN AMERICA AND
ESPECIALLY FOR LATIN-AMERICAN
PATIENTS.
THE SECOND THING THAT LACOG CAN
DO IS CREATING NEW RESEARCH
SITES.
WE ALL KNOW THAT IT'S VERY HARD,
VERY DEMANDING THE PROCESS OF
CREATING CLINICAL RESEARCH
CENTER SITE.
IT'S QUITE HARD FOR THE
INVESTIGATORS.
MANY INVESTIGATORS HERE IN LATIN
AMERICA DO NOT KNOW HOW TO DO
IT.
THEY DO NOT HAVE THE EXPERTISE
TO DO IT.
SO, WE CREATE TOGETHER WITH
INSTITUTE -- ALSO A NONPROFIT
ORGANIZATION AND RECEIVE SUPPORT
FROM SOME PHARMAS TO PAIR UP TO
FOSTER NEW RESEARCH CENTER SITES
ACROSS BRAZIL.
AND WE DID THAT ACTUALLY.
WE CAME UP WITH PROPOSALS FROM
SITES AND I'M JUST PRESENTING
YOU SOME OF THE SITES.
THE FIRST SITE IS IN THE
NORTHEAST OF BRAZIL.
THIS IS A SPECIFIC SITE IS THE
REFERENCE HOSPITAL FOR A MILLION
INHABITANTS OF THE CITIES
AROUND.
SO THIS IS EXPECTED TO BE A VERY
LARGE CLINICAL CANCER RESEARCH
SITE AND WE ARE VERY HAPPY TO
PARTNER WITH THEM TO HELP THEM
GET THE STRUCTURE.
ALSO THE SECOND ONE IS SIMILARLY
AS THE FIRST ONE.
THEY DO -- THEY ARE THE
REFERENCE FOR THE CITIES AROUND
WITH A POPULATION OF MORE THAN
TWO MILLION INHABITANTS.
AND THE THIRD ONE IS THE FIRST
CANCER RESEARCH CENTER IN THE
NORTH OF BRAZIL AT THE
UNIVERSITY.
AND THERE IS A THIRD VERY
SPECIFIC AND HARD ISSUE THAT IN
BRAZIL WE DEVELOP THAT WE HAVE
HIGH WILLINGNESS TO PARTICIPATE
IN CLINICAL TRIALS BUT DATA SAYS
WE DO NOT REACH NORTH AMERICAN.
WE ARE 93% OF PATIENTS ARE
WILLING TO PARTICIPATE IN
CLINICAL TRIALS.
IN EUROPE AS YOU CAN SEE, IT IS
EXPECTED TO BE 58% AND IN SOUTH
AMERICA 64%.
AND WE BELIEVE THAT THIS COULD
BE SOMEHOW CORRECTED OR WE COULD
ACT ON THAT SOMEHOW.
SO THIS IS WHAT WE DID.
WE DEVELOPED A PROJECT.
THIS PROJECT IS KIND OF A BRANCH
THAT IS DIRECTED TO PATIENTS.
THIS IS MADE FOR PATIENTS.
AND IT IS MADE BY PATIENTS TOO.
SO, WHAT IS PROJECT CURA?
IT IS ALSO NONPROFIT.
IT WORKS IN TWO SPECIFIC
ACTIVITIES.
THE FIRST ONE IS TO GET FUNDING
FOR CLINICAL RESEARCH TRIALS.
WE DO FIGHT FOR FUNDING WITH
THEM IN MANY, MANY WAYS.
THIS INCLUDES GOVERNMENT AND
THIS INCLUDES PHARMA
OCCASIONALLY, AND THIS ALSO
INCLUDES DONATIONS.
AND ALSO CURA IS THE BRANCH THAT
IS PARTLY LINKED TO PATIENTS.
AND WE DO PROMOTE FORUMS AND
PROMOTE MEETINGS TO GET THEM TO
KNOW WHAT CLINICAL RESEARCH IS
AND HOW CLINICAL RESEARCH CAN
HELP BOTH THE PATIENT, THE
RESEARCH CENTER AND ALSO SCIENCE
AS A WHOLE.
HOW CAN WE PROMOTE -- HOW CAN WE
PROMOTE SCIENCE IN A VERY
DIFFERENT WAY FOR BEING A
PATIENT.
AND THIS IS WHAT PROJECT CURA
DOES.
IT HAS BEEN WONDERFUL FOR THE
LAST YEARS.
THANK YOU FOR YOUR OPPORTUNITY.
I'D BE HAPPY TO ANSWER ANY
QUESTIONS YOU MAY HAVE.
THESE ARE THE ASSOCIATE
NETWORKS.
THANK YOU.
>>HELLO.
MY NAME IS MADELINE PESEC
INTERNAL MEDICINE AT BRIGHAM AND
WOMEN'S HOSPITAL IN BOSTON AND
I'M ALSO A RESEARCH ASSISTANT IN
A LAB.
THANK YOU VERY MUCH FOR HAVING
ME TODAY.
I'D LIKE TO SPEND THE NEXT 15
MINUTES TALKING WITH YOU ABOUT
COSTA RICA'S PRIMARY HEALTH CARE
SYSTEM AND LESSONS I'VE LEARNED
AFTER STUDYING THEIR SYSTEM FOR
THE PAST SEVEN YEARS.
COSTA RICA IS A CENTRAL AMERICAN
COUNTRY WITH A POPULATION OF
APPROXIMATELY 5 MILLION PEOPLE.
THEY HAVE A VERY UNIQUE
SOCIO-POLITICAL HISTORY IN THAT
THEY HAVE NOT HAD AN ARMY SINCE
THE MID 20TH CENTURY.
AND HAVE BEEN ABLE TO INVEST
THAT MONEY INTO EDUCATION AND
HEALTH CARE.
THEY ARE A MIDDLE-INCOME COUNTRY
WITH A GDP PER CAPITA OF ABOUT
12,000 DOLLARS PER PERSON PER
YEAR AND THE MAJORITY OF HEALTH
CARE HAS BEEN DELIVERED THROUGH
PUBLIC HOSPITALS AND PUBLIC
CLINICS.
ABOUT 1973.
THEY DO ALSO HAVE A PRIVATE
HEALTH CARE SECTOR BUT THE
MAJORITY OF HEALTH CARE IS
DELIVERED THROUGH THE PUBLIC
HOSPITALS AND THE PUBLIC CLIN
CLINICS.
SO IF WE LOOK AT WHERE COSTA
RICA SITS OVERALL IN TERMS OF
LIFE EXPECTANCY, IT IS DOING
EXTREMELY WELL.
SO WITHIN THE WESTERN
HEMISPHERE, IT RANKS THIRD FOR
LIFE EXPECTANCY OVER ALL.
YOU CAN COMPARE THAT TO THE
AVERAGE TO LATIN AMERICA.
IT BEATS OUT THE UNITED STATES
IN TERMS OF LIFE EXPECTANCY.
SIGNIFICANTLY ABOVE THE AVERAGE
WORLDWIDE.
LOOKING AT THE AMOUNT OF MONEY
THAT COSTA RICA INVESTS IN THE
HEALTH CARE SYSTEM, IT IS HAVING
A HIGH RETURN ON INVESTMENT.
SO YOU CAN SEE THAT IT HAS A
RELATIVELY LOW HEALTH
EXPENDITURE AS A PERCENTAGE OF
GDP AND THEN WE TALKED ABOUT IT
AS A MIDDLE-INCOME COUNTRY.
SO IT'S NOT THAT IT HAS AN
EXTRAORDINARILY HIGH GDP EITHER.
AND IT'S ABLE TO OBTAIN A REALLY
HIGH LIFE EXPECTY FOR THAT
INVESTMENT THAT IT HAS.
WHEN WE LOOK AT SOME OF THE
COVERAGE INDICATORS FOR
COSTA RICA, WE SEE THAT THEY ARE
ABLE TO DELIVER HEALTH CARE TO
THE VAST MAJORITY OF THEIR
POPULATION.
SO THESE DATA COME FROM THE
PRIMARY HEALTH CARE PERFORMANCE
INITIATIVE WHICH WAS A COALITION
OF NONPROFIT ORGANIZATIONS
DEDICATED TO TRANSPARENCY IN
DATA, SPECIFICALLY TO THE
COUNTRIES COULD VALLEY THEIR
HEALTH CARE SYSTEMS AND HOW THEY
WERE PERFORMING.
AND YOU WILL SEE ESPECIALLY ON
THE BOTTOM HERE THAT COSTA RICA
DOES INCREDIBLY WELL ACROSS MOST
OF THESE COVERAGE METRICS.
SO CHILDREN WITH DIARRHEA
RECEIVING APPROPRIATE TREATMENT.
PERCENTAGE OF WOMEN GETTING
APPROPRIATE ANTI-NATAL CARE.
THE VERY LOW PERCENTAGE OF DROP
OUT RATE FOR VACCINATIONS.
MEANING HIGH VACCINATION RATE
AND RELATIVELY LOW DROP OUT RATE
FOR ANTI-NATAL CARE AS WELL.
AND NOT ONLY ARE THEY COVERING A
WIDE SWATH OF THEIR POPULATION,
THEY ARE ALSO ACHIEVING
EXCELLENT OUTCOMES.
SO THIS IS JUST A HANDFUL OF
THEIR HEALTH OUTCOMES AND THEIR
PUBLICLY AVAILABLE.
BUT THEY HAVE EXCELLENT
MORTALITY.
EXCELLENT ADULT MORTALITY FOR
NON-COMMUNICABLE DISEASES AND
EXCELLENT MATERNAL MORTALITY
RATE AS WELL.
SO OF COURSE THE QUESTION
BECOMES HOW DO THEY DO IT?
HOW ARE THEY HAVING EXCELLENT
LIFE EXPECTANCY WITH RELATIVELY
LOW HEALTH EXPENDITURE AND
REALLY HAVING GREAT HEALTH CARE
DELIVERY QUALITY METRICS AS
WELL?
AND OVER THE NEXT 15 MINUTES OR
SO, I'M GOING TO ELABORATE AND
HOPEFULLY CONVINCE YOU WHY I
THINK THAT THE KEY TO THEIR
SUCCESS LIES IN THEIR PRIMARY
HEALTH CARE SYSTEM.
SO WHEN WE TALK ABOUT PRIMARY
HEALTH CARE, WE ARE TALKING
ABOUT THE MOST FOUNDATIONAL
FUNDAMENTAL LEVEL OF A HEALTH
CARE SYSTEM.
SO WHEN YOU THINK ABOUT A BIG
ACADEMIC MEDICAL CENTER, THAT IS
GOING TO BE YOUR TERTIARY CARE,
LIVER TRANSPLANTS, ALL OF YOUR
SPECIALTY CARE WILL BE UP IN
THAT TERTIARY CARE LEVEL.
SECONDARY CARE LEVEL IS REALLY
SOME OF THE MORE BROAD AND
GENERAL SPECIALTIES, GYNECOLOGY,
PEDIATRICS, SOME GENERAL SURGERY
AS WELL.
AND THEN PRIMARY CARE
ENCOMPASSES THE REST OF THE
HEALTH CARE SYSTEM.
SO WHO IS THAT FIRST CONTACT
WITH THE HEALTH CARE SYSTEM?
WHO IS PROVIDING BASIC CURATIVE
CARE AND PRESENTIVE CARE?
AND IN COASTED REEKA, I WILL
ARGUE THAT THEIR PRIMARY CARE IS
REAL WHAT HE IS DRIVING THEIR
SUCCESS.
SO IN 1995, COSTA RICA HAD A
MAJOR OVERHAUL OF THE PRIMARY
CARE SYSTEM AND I WILL EXPLAIN
MUCH MORE DETAIL ABOUT THAT
REFORM IN JUST A MINUTE.
BUT WHAT IS IMPORTANT TO KNOW
THAT THE MOMENT IS THE REFORM
THAT THEY HAD WAS ROLLED OUT
STEP-WISE ACROSS THE COUNTRY TO
VARIOUS COUNTY LEVELS.
SO ACROSS EIGHT-YEAR MURDER
DIFFERENT CONTUSION ACROSS THE
COUNTRY RECEIVED -- - AN
EIGHT-YEAR PERIOD.
-- WE CAN COMPARE IT TO COUNTIES
THAT HAVE OPEN HEALTH CARE
CLINICS AND COMPARED TO THOSE
WHO HAVE CLOSED HEALTH CARE
CLINICS AND COMPARE THE RESULT
BEFORE AND AFTER THE CLINIC WAS
OPENED.
SO THIS IS A STUDY THAT I
CONDUCTED WITH DR. GARCIA OUT OF
THE BUSINESS SCHOOL IN
COSTA RICA.
WHAT WE SHOWED IS THAT AS EACH
NEW PRIMARY CARE CLINIC OPENED,
AS PART OF THAT 1995 HEALTH
REFORM, THERE WAS A 13%
REDUCTION IN MORTALITY OVER THE
ENSUING NINE YEARS.
AND THIS IS ON A NATIONAL LEVEL
ACROSS THE POPULATION OF ABOUT 5
MILLION PEOPLE.
AND WHEN WE EXAMINE IN THE
SUBGROUP ANALYSIS WHERE DO WE
SEE THE BENEFITS OR RESULTS OF
THIS MOST HIGHLY CONCENTRATED?
WE SEE IT IN TWO SPECIFIC AREAS.
SO FIRST ON THE LEFT YOU'LL SEE
THAT THE ELDERLY POPULATIONS SAW
THE GREATEST REDUCTION IN
MORTALITY AND IT'S REALLY AN
INCREDIBLE 22% REDUCTION IN
MORTALITY AFTER OPENING A
PRIMARY CARE CLINIC COMPARED TO
THE 13% OVERALL.
AND NOTICING THE SHAPE OF THOSE
CURVES, YOU'LL NOTE THAT IT
SEEMS LIKE THE REDUCTION IN
MORTALITY FOR THE ELDERLY IS
WHAT IS DRIVING A LOT OF THE
MORTALITY CHANGE WE SEE OVERALL.
SO THEN WE ASKED OURSELVES WHAT
DISEASES ARE WE MOVING THE
NEEDLE IN TERMS OF MORTALITY?
AND WHEN WE LOOKED, IT SEEMS
THAT THE VAST MAJORITY OF
DISEASES THAT HAD A MAJOR
BENEFIT WHEN THEY OPENED A
PRIMARY CARE CENTER WERE
NON-COMMUNICABLE DISEASES.
SO DEATH FROM CARDIOVASCULAR
DISEASE, CANCER, COFD AND
DIABETES.
-- COPD.
AND THIS IS ENCOURAGING BECAUSE
ESPECIALLY AS LOW TO
MIDDLE-INCOME COUNTRIES CONTINUE
TO THEIR BURDEN OF DISEASE WITH
INFECTIOUS DISEASE AND
NON-COMMUNICABLE DISEASE, THE
SOLUTIONS FOR INFECTIOUS DISEASE
SEEM AT LEAST MUCH MORE CLEARLY
DELINEATED THAN THE COMPLEX
SYSTEM-WIDE CHANGE THAT IS
NEEDED TO MOVE THE NEEDLE ON
NON-COMMUNICABLE DISEASE.
BUT HERE WE SEE THAT COSTA RICA
HAS DONE THAT OVER THE PAST
DECADE OR SO SINCE IMPLEMENTING
THEIR NEW PRIMARY HEALTH CARE
SYSTEM.
SO LETS GET INTO MORE DETAIL
ABOUT WHAT THIS PRIMARY HEALTH
CARE REFORM IN 1995 ENTAILS
BECAUSE IT SEEMS LIKE COSTA RICA
IS ACHIEVING GREAT OUTCOMES AT
LOW COST AND REALLY ABLE TO PIN
A LOT OF THAT SUCCESS TO THEIR
STRONG HEAL HEALTH CARE SYSTEM.
SO WHEN YOU LOOK AT WHAT
COSTA RICA DID IN 1995 REFORM,
THIS REFORM WAS WIDESPREAD
ACROSS THE COUNTRY AND IT
ENCOMPASSED ALL PUBLIC, PRIMARY
CARE DELIVERY.
IT DREW ON THE EXPERIENCES OF
PHYSICIANS, PUBL PUBLIC HEALTH
EXPERTS AND IT REALLY WAS ABLE
TO DRAW FROM COSTA RICA'S STRONG
HISTORY OF PRIMARY CARE.
SO THIS DID NOT APPEAR OUT OF
THIN AIR.
COSTA RICA HAD ALREADY HAD MANY
EXCELLENT PRIMARY CACE PROGRAMS,
PUBLIC HEALTH EXAMPLES IN THE
COUNTRY THAT THEY WERE ABLE TO
BUILD ON AND EXPAND THOSE
MODELS.
THEY ALSO WORKED INCREDIBLY
DIFFICULT TO DEVELOP BUY IN FROM
STAKEHOLDERS PRIOR TO TRYING TO
GET THE LAW TO PASS THE REFORM
THROUGH CONGRESS.
SO BY THE TIME THAT LAW GOT TO
CONGRESS, THEY HAD WIDESPREAD
COALITION OF SUPPORT BEHIND
THEM.
AND INCREDIBLY INTENTIONAL ABOUT
HOW THEY IMPLEMENTED RENORM.
THEY SET UP PRINCIPLES FOR
IMPLEMENTATION THAT WERE REALLY
USE EQUITY LENSE IN ALL THE
DECISIONS IN DECIDING WHICH
CLINICS TO OPEN FIRST VERSUS
SECOND AND THIRD.
THEY HAD VOLUNTARY PARTICIPATION
AT THE BEGINNING.
TOWARDS THE END OF THE REFORM IT
BECAME COMPULSORY BUT THE FIRST
FOLKS TO PILOT THE MODEL WERE
ABSOLUTELY YOUY SOLICITED
VOLUNTARILY.
AND THEN IT ALSO WAS REALLY
GROUNDED IN COMMUNITY
ENGAGEMENT.
SO THESE ARE THE FOUR ELEMENTS
OF THE REFORM THAT WE'LL WALK
THROUGH ONE BY ONE.
SO THE FIRST THING THAT
COSTA RICA DID WHICH I THINK IS
REALLY KEY TO PRIMARY CARE IS
THAT THEY INTEGRATED THEIR
PUBLIC HEALTH SYSTEM, PREVENTIVE
CARE SYSTEM AND THEIR TERTIARY
CARE SYSTEM ALL AT THE PRIMARY
CARE LEVEL.
SO BEFORE THE REFORM, THE
PRESENTIVE CARE AND THE PUBLIC
HEALTH CARE FUNCTIONS WERE
COMPLETELY SEPARATE FROM THE
CURATIVE CARE THAT WAS PROVIDED
BY THE SOCIAL SECURITY AGENCY.
AFTER THE REFORM IN THIS NEW
PRIMARY CARE LEVEL, THE SOCIAL
SECURITY AGENCY WAS RESPONSIBLE
FOR ALL ASPECTS OF PRIMARY CARE
SO THAT IS THE PREVENTIVE CARE,
CURATIVE CARE AND THE PUBLIC
HEALTH FUNCTIONS WERE ALL
WRAPPED UP INTO THE SAME SYSTEM.
THE SECOND KEY ELEMENT OF THEIR
PRIMARY CARE SYSTEM IS SOMETHING
CALLED GEOGRAPHIC EM PANELMENT,
THE PROCESS OF ASSIGNING EACH
COASTA RICAN TO A PRIMARY CARE
TEAM.
AND THE WAY COSTA RICA DID THIS
WAS BY GEOGRAPHIC LOCATION OF
THE PERSON'S HOME.
AND THIS IS IMPORTANT SO THAT
EACH PRIMARY CARE TEAM KNOWS
EXACTLY WHO IT IS RESPONSIBLE
FOR AND THIS ENABLES POPULATION
HEALTH MANAGEMENT.
UNLESS YOU KNOW THE POPULATION
THAT YOU NEED TO TAKE CARE OF,
IT'S REALLY HARD TO BECOME PRO
ACTIVE ABOUT THEIR CARE AND
REACH OUT FOR THE PREVENTIVE
STEPS.
I WOULD LIKE TO NOTE THIS IS ALL
DONE IN THE MID 1990S BEFORE
THERE WERE COMPLEX GIS MAPPING
MODELS, BEFORE SATELLITE
IMAGING.
ALL THIS WAS DONE BY HAND IN
PARTNERSHIP WITH CARTOGRAPHERS
FROM THE UNIVERSITY.
THE NEXT IMPORTANT ELEMENT OF
THEIR PRIMARY HEALTH CARE MODEL
IS A MULTIDISCIPLINARY TEAM
STRUCTURE WHICH ISN'T EXACTLY A
REVOLUTIONARY STRATEGY BUT I
WOULD ARGUE IT IS KEY TO THEIR
SUCCESS.
SO THE NAME FOR THESE
MULTIDISCIPLINARY TEAMS ARE --
[ SPEAKING SPANISH ]
AND THESE TEAMS ARE COMPRISED OF
FIVE PEOPLE AND SERVE A
POPULATION OF ABOUT 4000 PEOPLE
EACH.
THEY ARE COMPRISED OF A DOCTOR
THAT DOES THE PREVENTIVE CARE
AND ALSO CURATIVE CARE.
A NURSE ASSISTANT THAT HELPS
ROOM PATIENTS, GET THOSE
ASSIGNED IN THE CLINIC AND ATAP,
A COMMUNITY HEALTH WORKER.
YOU WILL SEE IN THIS GRAPHIC
THAT THE ATAPs ARE VISITING
THE HOMES OF THEIR PATIENTS,
DELIVERING IMMUNIZATIONS IN THE
HOME, THEY ARE CONDUCTING
EPIDEMIOLOGIC SURVEYS AND
IDENTIFYING THE SOCIAL
DETERMINANTS OF HEALTH OF THEIR
PATIENTS AND THEN ACTING UPON
THOSE.
THE COMMUNITY HEALTH WORKERS
ALSO GO TOUT COMMUNITY LOCATIONS
SUCH AS SCHOOLS, CHURCHES AND
OTHER MUNICIPAL GOVERNMENT
BUILDINGS IN ORDER TO PROMOTE
HEALTH AND HEALTH EDUCATION
ACTIVITIES.
THEN A REALLY UNIQUE MEMBER OF
THE TEAM IS MEDICAL DATA CLERK.
AND THEY ARE IN CHARGE OF NOT
ONLY SOME OF THE SECRETARIAL
FUNCTIONS OF THE CLINIC,
CHECKING PATIENTS IN, BUT THEY
ARE ALSO IN CHARGE OF KEEPING
INCREDIBLY DETAILED NOTES ABOUT
THE PATIENTS THAT ENABLE THEIR
QI SYSTEM THAT WE'LL TALK ABOUT
IN THE NEXT SLIDE.
SOME CLINICS IN MORE REMOTE
AREAS ALSO HAVE A PHARMACIST
THAT ENABLES THEM TO PROVIDE
MEDICATION AT THE CLINIC LEVEL.
SO THE LAST KEY ELEMENT OF THE
PRIMARY HEALTH CARE SYSTEM IN
COSTA RICA IS THEIR ROBUST DATA
MANAGEMENT SYSTEM THAT UNDERLIES
THEIR QUALITY IMPROVEMENT
EFFORTS.
AND SO THERE ARE A MULTIITUDE OF
DATA STREAMS THAT FLOW IN THE
LOCAL TO REGIONAL LEVEL AND THEN
TO THE NATIONAL LEVEL.
BUT CRITICALLY, THOSE DATA THAT
ARE COLLECTED THEN ALSO FLOW
BACK DOWN TO THE LOCAL LEVEL TO
ENABLE RESOURCE PLANNING AND
QUALITY IMPROVEMENTS AT THE
PRIMARY CARE LEVEL.
OVER THE COURSE OF THE REFORM,
THEY CREATED A CULTURE OF
VALUING DATA TO ASSESS
PERFORMANCE NON PUNITIVELY.
AND MOST FASCINATING TO ME IS
SOMETHING CALLED THE QUALITIY
IMPROVEMENT INDEX WHICH ANNUALLY
RANKS THE HEALTH CLINICS FROM
BEST TO WORST.
AND THIS IS PUBLISHED PUBLICLY.
AND IT RANKS THE DIFFERENT
HEALTH AREAS OR DIFFERENT
CLINICS BASED ON A SERIES OF
DIFFERENT INDICATORS.
AND THIS ACTIVITY, THIS QUALITY
RANKING REALLY STIMULATES
QUALITY IMPROVEMENT AT THE LOCAL
LEVEL AT THE CLINIC LEVEL.
AND THERE ARE NO FINANCIAL
INCENTIVES ATTACHED TO THIS.
AND YET IT STILL HOLDS I THINK
CREDIBLE IMPORTANCE AND DRIVES
FORWARD QUALITY IMPROVEMENT
EFFORTS.
OVERALL, WHAT I LEARNED FROM THE
COSTA RICAN PRIMARY HEALTH CARE
SYSTEM IS THAT ROBUST PRIMARY
CARE MODELS CAN DRIVE IMPRESSIVE
REDUCTIONS IN MORTALITY.
BY INTEGRATING PREVENTIVE AND
CURATIVE CARE, WE CAN IMPROVE
CARE FOR THE WHOLE POPULATION
AND SPECIFICALLY HAVE AN IMPACT
ON NON-COMMUNICABLE DISEASES.
CLEARLY DEFINED POPULATIONS
ENABLE ACTIVE POPULATION HEALTH
MANAGEMENT WHICH FLOOD THE
TRADITIONAL MODEL OF DOCTORS
TREATING PATIENTS THAT ARRIVE TO
HEALTH CARE TEAMS PROMOTING
HEALTH FOR THEIR POPULATION.
TEAMS OF MULTIPLE TYPES OF
PROVIDERS CAN PROVIDE HOLISTIC
PRIMARY CARE TO PATIENTS AND
COMMUNITIES.
AND RELIABLE DATA FEEDBACK LOOPS
PROMOTE QUALITY IMPROVEMENT AT
THE PRIMARY CARE LEVEL.
THANK YOU VERY MUCH FOR HAVING
ME AND I LOOK FORWARD TO HEARING
YOUR QUESTIONS IN THE Q&A
SESSION.
THANK YOU.
>>GOOD MORNING, AGAIN.
THANK YOU TO THE SPEAKERS FOR
THEIR VERY INSIGHTFUL
PRESENTATIONS.
AND NOW WE ARE IN THE LIVE Q&A
WITH THEM.
AND THIS Q&A IS GOING TO BE
ABOUT 40 MINUTES LONG AND AFTER
THAT, WE WILL HAVE A BREAK.
SO, THANK YOU AGAIN TO THE
SPEAKERS FOR YOUR PARTICIPATION
AND FOR SHARING YOUR EXPERIENCE
WITH US AND YOUR PERSPECTIVES ON
THE VARIOUS ASPECTS OF RESEARCH
EMBEDDED INTO CLINICAL SETTINGS
OR HEALTH RESEARCH.
AND I'M GOING TO ASK THE FIRST
QUESTION TO DR. MARTINEZ.
COULD YOU ELABORATE FURTHER ON
IMPROVEMENTS IN HEALTH OUTCOMES
THAT YOU HAVE OBSERVED WITH
MIDO?
YOU MENTIONED SOME IN ONE OF THE
SLIDES, SOME OUTCOMES, SOME
GOALS ON HEMOGLOBIN A1C, WEIGHT,
BLOOD PRESSURE.
DO YOU HAVE OTHER OUTCOMES AS
WELL LIKE PREVENTION AND
HOSPITALIZATIONS OR REDUCTION OF
PLEA VENTABLE HOSPITALIZATIONS
OR MEDICATIONS SAFETY?
OTHER OUTCOMES LIKE THAT?
AND I WOULD LIKE TO ADD
SOMETHING VERY INTERESTING THAT
YOU SHOWED IN YOUR ALGORITHM OR
YOUR SYSTEM.
THE APPLICATION OF PERSONALIZED
RISK SCALES OR THE ALGORITHMS
THAT ALREADY EXIST.
SO HOW -- I THINK THERE ARE TWO
QUESTIONS IN ONE.
FOR ADDITIONAL HEALTH OUTCOMES
THAT YOU HAVE DERIVED FROM YOUR
SYSTEM AND HOW YOU INTEGRATE THE
SCALES?
THANK YOU.
>>DR. MARTINEZ: THANK YOU VERY
MUCH.
IT IS A PLEASURE TO BE HERE.
THE RISK SCALES, THE REASON WE
BEGAN USING THEM IS BECAUSE AT
FIRST WE REALIZED THAT THE LEVEL
OF HEALTH LITERACY IN HEALTH
PROFESSIONALS WAS ALSO LOW DUE
TO A LACK OF TRAINING AND
ESPECIALLY IN THE UP-TO-DATE
CLINICAL GUIDELINES.
MOST OF THE PEOPLE WE HAVE BEEN
WORKING WITH HAS BEEN IN THE
FIELD PERHAPS FOR 15-20-25
YEARS.
AND THEY HAVE NOT RECEIVED
PROPER PROFESSIONAL -- CONTINUED
MEDICAL EDUCATION.
SO THE USE OF RISK SCALES THEN,
IT BECOMES A VERY EASY TO ADAPT
SOLUTION BECAUSE PEOPLE CAN HAVE
ACCESS TO A VERY REALLY QUICK
INTERPRETATION OF DATA AND THEY
CAN UNDERSTAND THE RESULTS IN A
VERY EASY WAY.
SO FOR EXAMPLE, THE 21 PROFILES
THAT MIDO HAS REALLY VERY EASY
TO UNDERSTAND.
THE THING IS, WHAT ARE THE
RECOMMENDATIONS THEY ARE GOING
TO PROVIDE TO PATIENTS?
AND THAT IS WHY I MADE SO MUCH
EMPHASIS ON THE COUNCILLING
BECAUSE YOU REALLY NEED TO MAKE
SURE THAT PEOPLE UNDERSTAND WHAT
THE RISK CONDITIONS ARE.
AND REALLY THAT PROCESS OF
AWARENESS OR RAISING AWARENESS
ON YOUR CONDITION, TO ME, IS THE
MOST IMPORTANT PART OF THE
PROCESS BECAUSE YOU CAN HAVE
ACCESS TO THE DEVICES.
YOU CAN HAVE ACCESS TO THE
RESULTS, BUT IF YOU DON'T KNOW
HOW TO UNDERSTAND THEM, THEY ARE
NOT ACTUALLY MAKING A
DIFFERENCE.
SO THE MOST IMPORTANT THING --
AND I WOULD SAY THAT THE -- I
WOULD FIND MOST INTERESTING ARE
THOSE THAT ALLOW PEOPLE TO
ACTUALLY UNDERSTAND THEIR
DISEASE MORE OR THEIR HEALTH
CARE CONDITION MORE.
AND THAT MAKING SURE THAT YOU
PREVENT HOSPITALIZATIONS OR THAT
YOU PREVENT COMPLICATIONS, WE
HAVEN'T MADE A COHORT.
SO REALLY WE HAVEN'T FOLLOWED UP
PEOPLE IN LONG TERM.
AND PART OF THE DIFFICULTIES OF
DOING THAT IS IN THE END WE ARE
NOT HEALTH SERVICES PROVIDERS.
WE WORK WITH ORGANIZATIONS AND
WE DO PROVIDE THOSE HEALTH
SERVICES.
AND WE WOULD LOVE TO HAVE AN
OPPORTUNITY TO HAVE A COHORT IN
WHICH WE CAN TEST THIS BECAUSE
IN THE END, I'M CONVINCED THAT
THE EDUCATIONAL SIDE, ALONGSIDE
PHARMACOLOGICAL TREATMENT AND
ALONGSIDE ACCESS TO OTHER
SERVICES, IS REALLY WHAT MAKES
THE DIFFERENCE.
BUT I WOULD SAY THAT RISK SCALES
ARE REALLY IMPORTANT IN THAT
THEY HAVE ENABLED US TO REALLY
PROVIDE PROFESSIONAL HEALTH RISK
SERVICES AND REALLY STRENGTHEN
THE QUALITY OF THEM.
THANK YOU.
>>THANK YOU DR. MARTINEZ.
MY NEXT QUESTION OR THE NEXT
QUESTION IS FOR DR. PIETTE.
CAN YOU SAY MORE ABOUT THE
IMPLICATIONS OF YOUR WORK USING
ARTIFICIAL INTELLIGENCE TO MAKE
EVIDENCE-BASED HEALTH SERVICES
MORE ACCESSIBLE IN LATIN
AMERICA?
AND I WOULD LIKE TO ADD A COUPLE
OF THINGS TO THAT QUESTION.
AS WE CONTINUE OBSERVING AND
LISTENING TO YOUR PRESENTAT
PRESENTATION -- AND THIS MAY
APPLY ALSO TO MIDO -- IS THE
QUALITY OF THE DATA ALSO WOULD
HELP BUILD THE ALGORITHM OR THE
DECISION-MAKING?
SO HOW IN THE IMPLICATIONS OF
YOUR WORK, HOW YOU SEE THE
QUALITY OF DATA OR THE
COMPLETENESS OF YOUR DATA TO
BUILD THOSE ALGORITHMS AND HELP
WITH THE DECISION-MAKING?
AND IF THERE IS A ROLE FOR
PATIENT REPORTED OUTCOMES IN
THIS STRUCTURE THAT YOU HAVE
BEEN WORKING?
>>DR. PIETTE: THANK YOU VERY
MUCH FOR THIS OPPORTUNITY TO BE
HERE.
IT'S A WONDERFUL SESSION.
FIRST LET ME ADDRESS THAT
QUESTION ABOUT THE QUALITY OF
THE DATA.
IN THE TRIAL THAT I PRESENTED
ABOUT PAIN CBT, COGNITIVE
BEHAVIORAL THERAPY, THOSE REAL
ARE ARE PATIENT-REPORTED
OUTCOMES.
PATIENTS ARE TELLING US HOW BAD
THEIR PAIN IS, HOW BAD THEIR
SLEEP IS, HOW THEIR FUNCTIONING
IS.
ALL THAT IS PATIENT-REPORT THE
OUTCOMES.
IN THE WORK WE ARE REALLY
EMBARKING ON IN LATIN AMERICA
WHEN WE ARE LOOKING AT WOMEN
THAT HAVE A POST-TRAUMATIC
STRESS, DEPRESSION, ANXIETY
DISORDERS, AGAIN THOSE ARE ALL
PATIENT REPORTED OUTCOMES THERE
IS NO OTHER WAY TO GET THEM.
WE KNOW THAT BETWEEN VISIT
REPORTS WHILE PATIENTS ARE IN
THEIR NATURAL ENVIRONMENT, WHILE
PEOPLE ARE IN THEIR HOMES,
LEADING DAILY LIVES, THOSE SORTS
OF PATIENT-REPORTED OUTCOMES ARE
MORE ACCURATE AND REFLECTIVE OF
WHAT IS HAPPENING WITH THE
PERSON THAN WHEN THEY COME IN TO
THE CLINIC, IF THEY COME INTO
THE CLINIC.
SO PATIENT-REPORTED OUTCOMES AND
USING DIGITAL TOOLS TO COLLECT
THOSE, I THINK ARE -- I TOTALLY
AGREE ARE FUNDAMENTAL.
MORE GENERALLY, THE IMPLICATIONS
OF THIS AREA OF WORK ARE THAT I
THINK WE HAVE A NEW WAY TO MAKE
EVIDENCE-BASED PROGRAMS MORE
SCALABLE.
SO I TALKED A LOT ABOUT CBT BUT
ANOTHER GREAT EXAMPLE IS THE
DIABETES PREVENTION PROGRAM,
WHICH MANY, IF YOU'RE FAMILIAR
WITH, THAT WAS COMPARING
BEHAVIORAL SUPPORT FOR PATIENTS
WITH PRE-DIABETES TO SAY
METFORMIN, TO MEDICATION.
THEY ACTUALLY STOPPED THE TRIAL
EARLY BECAUSE THE BEHAVIORAL
INTERVENTION WAS SO MUCH MORE
EFFECTIVE THAN EVEN MEDICATIONS
THAT IT WASN'T ETHICAL TO
CONTINUE WITH THE TRIAL.
BUT GUESS WHAT?
THAT TRIAL WAS PUBLISHED OVER 20
YEARS AGO.
MOST PATIENTS DON'T HAVE ACCESS.
SO WHAT WE ARE HEARING FROM
CLINICIANS AND HEALTH SYSTEMS
AND PATIENTS IS NOT ONE MINUTE
MORE, NOT $1 MORE.
THERE IS FOCUS ON KIND OF
EFFICIENCY AND FIGURING OUT WHO
NEEDS HOW MUCH ATTENTION.
I THINK IT HAS BROAD
APPLICABILITY FOR ADDRESSING A
VARIETY OF THINGS THAT HAVE BEEN
REALLY THE FUNDAMENTAL DRIVERS
OF THIS GAP BETWEEN WHAT WE KNOW
WORKS IN ACADEMIA AND WHAT IS
HAPPENING IN THE REAL WORLD.
IN ADDITION, THESE SORTS OF AI
APPROACHES WILL ALLOW US TO
PERSONALIZE CARE.
SO INSTEAD OF HAVING A
ONE-SIZE-FITS-ALL APPROACH, IN
THEORY, SOME OF THE PROGRAMS
EITHER THAT PAIN PROGRAM, FOR
EXAMPLE, THAT WE TESTED IN
MICHIGAN, COULD BE APPLIED
DIRECTLY IN MEXICO OR HON DUR
ASS OR IN COLUMBIA.
-- HONDURAS -- AND IT WOULD
LEARN A DIFFERENT PATTERN OF
INTERACTIONS WITH PATIENTS USING
THE SAME PROGRAM.
NOT NECESSARILY RECOMMENDED WE
DO SOMETHING JUST LIKE THAT, BUT
THE IDEA IS THAT THESE PROGRAMS
WILL LISTEN AND ADAPT TO WHAT
THEY ARE DOING TO INDIVIDUALS
AND TO HEALTH SYSTEMS AND
CONTEXT.
SO THAT IS AN EXCITING ADVANCE
TO THE WAY WE THOUGHT ABOUT
GUIDELINE RECOMMENDED PROGRAMS
IN THE PAST.
THE LAST IMPLICATION, I GUESS,
IS THAT ARTIFICIAL INTELLIGENCE
IN GENERAL IS A GAME OF LARGE
NUMBERS.
IT WORKS BEST WHEN IT HAS A LOT
OF INFORMATION AND A LOT OF
EXPERIENCE AND A LOT OF
INTERACTIONS FROM WHICH TO
LEARN.
JUST LIKE WE KNOW THAT A
CLINICIAN THAT HAS BEEN
PRACTICING FOR 20 YEARS HAS A
DIFFERENT WAY OF MAKING
DECISIONS IN A MORE EFFECTIVE,
MORE EFFICIENT WAY, THAN SOMEONE
WHO IS JUST OUT OF MEDICAL
SCHOOL.
SO, THE IMPLICATIONS ARE
SPECIFICALLY RELATED TO THE
OVERALL TOPIC OF THIS CONFERENCE
IS THAT WE HOPE THAT WE CAN HAVE
BOTH -- WITHIN COUNTRY AND
INTERNATIONALLY LARGER TRIALS
WHERE WE CAN TEST THESE METHODS
OUT.
WE FIND THEM AND SEE FOR WHOM
THEY WORK, WHERE THEY WORK AND
HOW WE CAN MAKE THEM BETTER.
>>THANK YOU.
THANK YOU DR. PIETTE.
AND DR. GUSTAVO GOSSLING, ARE
YOU ON YET?
THANK YOU.
>>GUSTAVO GOSSLING: YES, I AM.
>>SO YOUR QUESTION IS WHAT ARE
THE MOST COMMON CHALLENGES THAT
IN YOUR CASE, THAT YOU HAVE
CONFRONTED OR ADDRESSED WHILE
INTEGRATING CANCER RESEARCH
EMBEDDED IN A HEALTH CARE
SETTING OR HEALTH CARE SYSTEM?
IN LATIN AMERICA, ANY STRATEGIES
THAT HAVE WORKED?
ANY STRATEGIES YOU WOULD
RECOMMEND?
AND YESTERDAY, YOUR COLLEAGUE
MENTIONED SOME CHALLENGES AT THE
HIGH LEVEL.
IF YOU COULD MENTION SOME
CHALLENGES, PROBABLY AT THE
CLINICAL LEVEL AND THE CLINICAL
SETTING LEVEL.
>>GUSTAVO GOSSLING: THERE ARE
SO MANY ISSUES BUT THE FIRST ONE
AND MOST IMPORTANT ONE IS
GETTING A MOTIVATED TEAM.
THIS IS WHY THE FIRST THING WE
EVER THOUGHT OF DOING WHEN WE
WERE TRYING TO OPEN NEW CLINICAL
SITES, NEW RESEARCH SITES IN
BRAZIL WAS GETTING A KIND OF
PROPOSAL FROM THE SITES.
BECAUSE WE NEED THE MOTIVATED
TEAM.
BECAUSE CLINICAL RESEARCH HOLDS
A LOT OF PAPERWORK AND WE ALL
KNOW THAT WE HAVE TO APPLY FOR
GRANTS.
WE HAVE TO WRITE MANUSCRIPTS WE
HAVE A LOT OF ETHICAL
REGULATIONS TO DO.
SO GETTING A TEAM THAT IS
MOTIVATED IS KIND OF THE MOST
IMPORTANT THING.
HOWEVER, WE DO HAVE ALSO TO DEAL
WITH ETHICAL REGULATIONS.
BECAUSE WE HAVE TO DO THE
ETHICAL EVALUATION FOR THEIR OWN
CLINICAL RESEARCH.
AND THERE IS ALSO ONE SPECIAL
IMPORTANT THING THAT IS CLINICAL
RESEARCH IN SOME COUNTRIES IT
CANNOT BE -- IT CANNOT HAPPEN
TOGETHER WITH THE PUBLIC HEALTH
SETTING LIKE IN THE SAME PLACE.
BUT THIS IS SOMETHING THAT WE
CAN DISCUSS IN ANOTHER TIME.
THESE ARE THE MOST IMPORTANT
CHALLENGE IS TO GET TEAM THAT IS
MOTIVATED BECAUSE IT TAKES TIME
AND IT TAKES A LOT OF PAPERWORK
TO MAKE IT HAPPEN.
>>MODERATOR: THANK YOU,
DR. GUSTAVO GOSSLING.
THANK YOU.
DR. MADELINE PESEC, OMENED IN
ONE OF THE FIRST SLIDES SOME
MEASURES OR RATES WHEN YOU WERE
EXPLAINING THE SUCCESS OF
PRIMARY CARE IN COSTA RICA.
AND THE MEASURES WERE MORE ABOUT
MATERNAL CHILDREN'S HEALTH.
WHAT ARE THE MEASURES THAT HAVE
BEEN APPLIED OR INCORPORATED FOR
CHRONIC DISEASES AND HOW DO THEY
RELATE TO THE REDUCTION IN
MORTALITY THAT YOU INFORMED US?
>>MADELINE PESEC: ABSOLUTELY.
THANK YOU VERY MUCH FOR HAVING
ME TODAY.
I'M SO GRATEFUL TO BE ABLE TO BE
HERE.
IT'S A CHALLENGING QUESTION.
SO THOSE METRICS COME FROM
INTERNATIONALLY-VALIDATED
METRICS.
SO WHEN THEY CAME TOGETHER, THEY
DECIDED THEY WOULD ONLY USE DATA
FROM THE WORLD BANK OR
INTERNATIONAL SITES.
COSTA RICA HAS A LOT OF INTERNAL
DATA ON THE NON-COMMUNICABLE
DISEASES.
BUT IT WASN'T INCORPORATED INTO
THE PAGE CPI MODEL IN
PARTICULAR.
SO LOOKING AT WHAT COSTA RICA
DOES ON A NATIONAL LEVEL TO
MONITOR CHRONIC DISEASE, IS
ACTUALLY AN INCREDIBLY BROAD
TOPIC BECAUSE EACH PART OF THE
HEALTH SYSTEM HAS MULTIPLE
METRICS THEY USE.
BUT I'LL GIVE YOU THIS AS AN
EXAMPLE FROM THE QUALITY INDEX
THAT I TALKED ABOUT AT THE END
OF THE PRESENTATION.
SO THE METRICS THAT GO INTO THAT
QUALITY RANKING SPECIFICALLY
LOOKING AT NON-COMMUNICABLE
DISEASES, ARE THE PERCENTAGE OF
PEOPLE WITHIN THAT HEALTH AREA,
THAT GEOGRAPHIC AREA, WITH TYPE
II DIABETES WHO HAVE OPTIMAL
CONTROL OF THEIR HEMOGLOBIN A1C
AND BLOOD PRESSURE AND WHO HAVE
CONTROL OF THEIR CHOLESTEROL.
AS MEASURED BY THE MOST RECENT
VISIT TO THE CLINIC.
PERCENTAGE OF HYPOLIPIDEMIA
AND/OR CHOLESTEROL AND ALSO
METRICS OF PERCENTAGE OF WOMEN
35-65 WHO HAVE HAD A PAP SMEAR
IN THE LAST TWO YEARS.
SO ALL OF THESE METRICS ARE
MEASURED BY AN INDEPENDENT
INVESTIGATOR THAT COMES TO DO A
CHART REVIEW OF THE CLINIC AND
THEY ARE CHOOSING CHARTS, 50-100
CHARTS AT RANDOM BASED ON THE
SIZE OF THE CLINIC AND THEN
CONDUCTING THAT REVIEW AND THEN
GOING THROUGH ON A PATIENT BY
PATIENT LEVEL TO MAKE SURE, WAS
THE QUALITY TARGET MET OR NOT
MET FOR EACH PARTICULAR PATIENT.
AND THEN I THINK IT IS REALLY
IMPORTANT TO MENTION HERE THIS
POINTED, IT'S NOT SOMETHING THAT
IS OCCURRING AT THE OFFICIAL
LEVEL.
SO THE MULTIDISCIPLINARY TEAM
MODEL THEY HAVE IS REALLY
TACKLING EXACTLY WHAT WE WERE
TALKING ABOUT, THE COMMUNITY
HEALTH WORKERS ARE ABLE TO
PROVIDE EDUCATION IN PEOPLE'S
HOME, IN THEIR CHURCHES, IN
THEIR COMMUNITY ORGANIZATIONS
AND THE PLACES WHERE THEY LIVE
AND WORK.
THEY ALSO HAVE NURSES THAT ARE
AT THE HEALTH AREA LEVEL THAT
CAN DO ADDITIONAL EDUCATION.
AND THEY HAVE PROTOCOLS ON THE
PHYSICIAN SIDE OF THINGS THAT
INCLUDES THINGS LIKE PRE
DIABETES, PRE HYPERTENSION, THAT
THEY ARE ABLE TO TRACK FOLKS AT
RISK FOR PROGRESSION TO
NON-COMMUNICABLE DISEASES.
SO THIS IS REALLY A TEAM MODEL
THAT IS ABLE TO ACHIEVE SUCH
GREAT REDUCTION IN MORTALITY FOR
NON-COMMUNICABLE DISEASES.
>>MODERATOR: THANK YOU,
DR. MADELINE PESEC.
THANK YOU VERY MUCH.
THERE IS ANOTHER QUESTION FOR
DR. TRAYVON MARTIN.
DR. A DR. EDUARDO RODRIGO
SAUCEDO-MARTINEZ.
COULD YOU ELABORATE FURTHER FOR
THE INTERNATIONAL STATUS OF CARE
AND COORDINATION OF CARE FOR
PATIENTS WITH MORE THAN ONE
CHRONIC DISEASE IN LOW RESOURCE
SETTINGS?
WE WANT TO ALSO UNDERSTAND --
YOU MENTIONED INTERPRETATION OF
THE FINDINGS OF THE RESULTS.
THAT ASPECT OF PATIENT CLINICIAN
COMMUNICATION OR RELATIONSHIP
WITHIN THE CONTEXT OF ARTIFICIAL
INTELLIGENCE.
>>EDUARDO RODRIGO
SAUCEDO-MARTINEZ: I THINK YOU
ARE TOUCHING ON A SENSITIVE
POINT THAT WE HAVE TAKEN GREAT
PRECAUTION AT THE FOUNDATION
BECAUSE PEOPLE TEND TO THINK
THAT THE DIFFICULTY ON THE EARS
OF ARTIFICIAL INTELLIGENCE LIES
IN ANALYTICAL METHODS.
WHEREAS THE MOST IMPORTANT AND
THE MOST SENSITIVE TOPICS ARE
AROUND INTERPRETATION AND
COMMUNICATION AND REALLY HOW TO
MAKE THESE ARTIFICIAL
INTELLIGENCE ACTUALLY PROMOTING
MORE EQUITY AND MORE QUALITY OF
CARE.
ONE OF THE DIFFICULTIES THAT WE
HAVE FACED HERE IN MEXICO IS
THAT ON ONE HAND, THE DATA THAT
WE USE NEEDS TO BE CURATED AND
WE WANT TO MAKE SURE THAT WE
HAVE THE APPROPRIATE DATASETS TO
USE.
THE OTHER THING IS THAT WE HAVE
TO BE VERY REALISTIC ON THE
MEXICAN HEALTH SYSTEM.
SO WE CAN USE, WE CAN START
USING CLINICAL GUIDELINES AND WE
CAN COME UP WITH THE MOST
SOPHISTICATED AND MOST, LET'S
SAY, THE FRONTIER TREATMENTS,
BUT THE REALITY HITS YOU IN THE
FACE AND YOU NEED TO MAKE SURE
YOU PRESCRIBE SOMETHING THAT
PEOPLE CAN USE.
AND I'M NOT ONLY TALKING ABOUT
PHARMACOLOGICAL TREATMENT.
I'M ALSO TALKING ABOUT HOW TO
PRESCRIBE HEALTHY DIET, HOW CAN
YOU PRESCRIBE A DIET THAT
ACTUALLY PEOPLE CAN BUY AT THE
MARKET IN THE LOCAL COMMUNITIES
AND NOT REALLY LOOKING INTO
FANCY FOODS THAT THEY CANNOT
AFFORD.
SO ONE OF THE MOST DIFFICULT
PARTS OF USING ARTIFICIAL
INTELLIGENCE IS REALLY MAKING
SURE THAT YOU'RE TESTING YOUR
MODELS IN THE FIELD WITH REAL
PEOPLE.
AND BE VERY HUMBLE IN THAT YOU
MAY HAVE COME UP WITH A SOLUTION
THAT IN THEORY IS BEAUTIFUL BUT
IN REALITY IT IS NOT PRACTICAL.
SO IT REALLY IS WHAT WE SAY IN
SPANISH,.
[ SPEAKING SPANISH ]
YOU NEED TO GO BACK-AND-FORTH
MANY TIMES BEFORE YOU COME TO
WITH AN ACTIONABLE SOLUTION.
SO I CAN SAY THAT THE MOST
DIFFICULT PART -- AND THIS IS
SOMETHING THAT IS NOT BEING
DISCUSSED WITH THE INTENSITY AND
WITH THE DEPTH THAT WE SHOULD.
ONE OF THE MOST DIFFICULT PARTS
IS ACTUALLY COMING UP WITH
PRACTICAL SOLUTIONS.
>>MODERATOR: THANK YOU,
DR. EDUARDO RODRIGO
SAUCEDO-MARTINEZ.
THANK YOU VERY MUCH.
ANOTHER QUESTION FOR DR. PIETTE.
WHAT WOULD BE HIGH PRIORITY
TOPICS FOR COLLABORATIVE
RESEARCH TO ADDRESS THE MENTAL
HEALTH NEEDS OF PEOPLE IN LATIN
AMERICA AS WELL AS NEW
IMMIGRANTS IN THE U.S.?
>>DR. PIETTE: SINCE YOU
MENTIONED SPECIFICALLY MENTAL
HEALTH, WHEN I WAS THINKING
ABOUT PRIORITIES IN MY OWN MIND,
I CONFESS TO A BIT OF A BIAS,
BUT MENTAL HEALTH DEFINITELY
ITSELF IS A PRIORITY.
WE KNOW THAT IMMIGRANTS ARE
FLEEING THEIR HOME COUNTRIES
BECAUSE OF EXTREMELY DISTRESSING
CIRCUMSTANCES, INCLUDING
VIOLENCE WHERE OPPRESSIVE
SITUATIONS WHICH ARE CAUSING
DEPRESSION AND ANXIETY.
AND THEN THE PROCESS OF
IMMIGRATING TO THE UNITED STATES
IS A VERY TRAUMATIC.
WE KNOW THAT.
AND THEN ONCE THEY GET TO THE
UNITED STATES, THERE ARE THE
ADDITIONAL TRAUMAS THAT THEY ARE
EXPERIENCING AS NEW IMMIGRANTS.
SO I'M QUITE CONVINCED THAT
MENTAL HEALTH IS GOING TO BE A
PRIORITY FOR RESEARCH,
SPECIFICALLY FOR AGAIN, MAKING
MY BIASES CLEAR FOR HEALTH
SYSTEMS THAT ARE GOING TO BE AND
ARE OVERWHELMED WITH NEED BUT
DON'T HAVE THE RESOURCES.
SOME OF THE APPROACH THAT IS
HAVE DESCRIBED, I THINK MIGHT BE
HELPFUL AND AGAIN, THE GOOD NEWS
IS THAT THESE COGNITIVE --
FORGETTING ABOUT THE AI FOR A
SECOND.
COGNITIVE BEHAVIORAL THERAPY
WORKS.
BRIEF INTERVENTIONS WORK FOR
MENTAL HEALTH.
THEY WORK AROUND THE WORLD.
THEY HAVE BEEN TESTED IN LATIN
AMERICA.
THEY HAVE BEEN TESTED IN AFRICA.
THEY HAVE BEEN TESTED IN
WAR-TORN PARTS OF THE MIDDLE
EAST.
THEY CAN WORK.
THEY CAN BE DELIVERED BY
COMMUNITY HEALTH WORKERS.
WE SLIGHTLY NEED MORE -- WE
ABSOLUTELY NEED MORE TESTING OF
THAT.
SO PRIORITY TO ME WOULD BE TO DO
MORE RANDOMIZED TRIALS.
SO THE PROJECT THAT I MENTIONED
THAT WE'RE DOING IN HONDURAS
WILL USE AI TO KIND OF TRY TO
MINIMIZE THE USE OF SCARCE
CLINICAL RESOURCES BUT IT WON'T
BE A CLINICAL TRIAL.
IT'S NOT SOMETHING OF THAT SIZE.
THE GOOD NEWS IS THAT AGAIN
WITHOUT GOING INTO SOME OF THE
TECHNICAL DETAILS, THESE
PROCESSES WORK EXACTLY THROUGH A
PROCESS THAT YOU COULD SAY IS.
[ SPEAKING SPANISH ]
THAT IS AS EDUARDO RODRIGO
SAUCEDO-MARTINEZ SAID.
THAT IS WHAT IS GOOD ABOUT THEM.
SO WE AREN'T DECIDING AHEAD OF
TIME WHAT IS GOING TO WORK FOR A
SPECIFIC IMMIGRANT TO THE UNITED
STATES.
THOSE INTERVENTION TRIALS
THEMSELVES WILL TEACH US A LOT.
I HAVE OTHER PRIORITIES.
THERE ARE SOME REALLY EXCITING
ADVANCES ON A TECHNICAL SIDE
WITH ARTIFICIAL INTELLIGENCE.
SO NOT ONLY TRYING TO OPTIMIZE
THE CARE FOR INDIVIDUAL PATIENT,
BUT ENSURING, FOR EXAMPLE, THAT
IN A POPULATION OF PATIENTS
SERVED BY A CLINIC, THAT THE
MOST -- THAT THE INDIVIDUALS
THAT ARE MOST LIKELY TO BENEFIT
FROM CARE RECEIVE AUTOMATICALLY
PRIORITY FOR SERVICES.
THAT IS SOMETHING THAT I THINK
MOST OF US CAN GET VERY EXCITED
ABOUT.
SOMETHING THAT HEALTH SYSTEMS
AND INDIVIDUAL CLINICIANS HAVE A
TOUGH TIME DOING.
SO WE CAN ADD ADDITIONAL
FEATURES OF THESE ARTIFICIAL
INTELLIGENCE ALGORITHMS TO MAKE
THEM MORE JUST AND FAIR AND
ENSURE THAT PATIENTS THAT REALLY
NEED OUR SUPPORT ARE THE ONES
THAT ARE FIRST IN LINE, SO TO
SPEAK.
>>MODERATOR: THANK YOU,
DR. PIETTE.
ANOTHER QUESTION FOR DR. GUSTAVO
GOSSLING.
IT IS ABOUT INTEGRATING CLINICAL
RESEARCH OR CLINICAL TRIAL
WITHIN THE CONTEXT OF THE HEALTH
CARE SETTING.
SOMETIMES THERE COULD BE A
CONFUSION AMONG STAFF, AMONG
PATIENTS, ABOUT THE DIFFERENCE
BETWEEN CLINICAL CARE AND
CLINICAL RESEARCH.
AND WHEN IT NAPS THIS SETTING T
IS EVEN MORE.
SO WHAT ARE THE KEY ELEMENTS
THAT YOU RECOMMEND OR HAS BEEN
YOUR EXPERIENCE AT INTEGRATING,
MAKING SURE THAT THIS
DISTINCTION HAPPENS?
OR IS IT POSSIBLE AT ALL?
OR THEY DO YOU RECOMMEND TAKING
CARE OF BOTH?
WHAT IS YOUR EXPERIENCE IN LATIN
AMERICA AND WHAT ARE THE
RECOMMENDATIONS?
>>GUSTAVO GOSSLING: SO, I
BELIEVE THAT IN LATIN AMERICA,
THIS IS NOT THAT COMMON,
ESPECIALLY BECAUSE WE DO HAVE
SOME GOVERNMENTS WHO PROVIDE
PUBLIC HEALTH CARE.
AND THIS IS A VERY SPECIFIC
LEGAL ISSUE THAT HAPPENS IN SOME
COUNTRIES IN LATIN AMERICA.
BECAUSE WHEN YOU ARE DOING
CLINICAL RESEARCH, EITHER
SPONSORED BY PHARMA OR ACADEMIC
GROUP OR NOT SPONSORED AT ALL,
THIS SHOULD NOT EVER HAVE OR USE
THE RESOURCES AT THE PUBLIC
HEALTH SYSTEM.
THIS IS VERY IMPORTANT LEGAL
ISSUE.
SO FOR LATIN AMERICA, I DO NOT
THINK THIS IS SUCH A LARGE, SUCH
A COMMON CONDITION AS IT IS IN
EUROPE OR UNITED STATES WHERE
THOSE ARE KIND OF MORE MIXED.
THIS IS SOMETHING WE REALLY MUST
TAKE A LOOK AT BECAUSE THIS IS
VERY IMPORTANT FOR THE
INVESTIGATORS AND THE
INSTITUTION WHICH WOULD NEVER
USE THE PUBLIC RESOURCES TO
CONDUCT CLINICAL RESEARCH IN
LATIN AMERICA.
THIS IS ABSOLUTELY NOT
ADVISABLE.
THIS IS EVEN LIABLE.
ONE OF THE MOST IMPORTANT THINGS
ABOUT HEALTH CARE, HOW TO END
BAD HEALTH CARE SYSTEMS AND
CLINICAL RESEARCH IN LATIN
AMERICA BECAUSE AS WE CANNOT MIX
THEM TOGETHER IN EXACTLY THE
SAME PLAGUES, WE HAVE TO GET
AROUND AND KNOW HOW TO MIX THE
THEMES FROM CLINICAL RESEARCH
AND FROM THOSE WHO ACTUALLY TAKE
CARE OF PATIENTS SO THAT THEY
ARE MIXED.
AND THEY CAN, AT THE SAME TIME,
ACCRUE AND MAKE EVERYTHING AS
CLEAR AND SEAMLESS AS POSSIBLE
FOR CLINICAL INVESTIGATORS AND
FOR PATIENTS.
>>MODERATOR: THANK YOU
DR. GUSTAVO GOSSLING.
THANK YOU VERY MUCH.
AND DR. MADELINE PESEC, I HAVE A
QUESTION FOR YOU THAT ACTUALLY
HAS BEEN HAPPENING IN THE CHAT.
THERE IS ANOTHER ONE THERE FOR
YOU.
BUT THE FIRST QUESTION IS ABOUT
THE QUALITY MEASURES.
WHAT ARE THE ELEMENTS OF
MEASUREMENT AND QUALITYIVE
PROVEMENTS?
YOU INDICATED SOMETHING IN THE
CHAT BOX FOR THOSE WHO ARE
WATCHING ON VIDEOCAST.
COULD YOU EXPLAIN THE QUALITY
INDEX THAT YOU REFERRED TO?
>>MADELINE PESEC: ABSOLUTELY.
SO THE DATA LANDSCAPE IN
COSTA RICA IS EXTREMELY COMPLEX
AND I WAS ABLE TO PRINT OUT KIND
OF AN ORIGINAL DRAFT OF SOME OF
THE COMPLEXITY OF DATA STREAMS
FOR EVERYONE.
BUT IT PRINTED OUT A LITTLE
FUNNY BUT THE DATA LANDSCAPE
GOES FROM INCREDIBLY COMPLEX
WITH DATA BEING REALLY
PRIORITIZED AND DATA BEING
VALUED AS SOMETHING ON WHICH
DECISIONS SHOULD BE TAKEN.
AND SO I THINK THAT UNDERLIES
ALL THESE CONVERSATIONS THAT YOU
CAN HAVE AN INDEX THAT IS NOT
GOING TO IMPACT OR PROMOTE
QUALITY IMPROVEMENT IF NOBODY
CARES ABOUT THE INDEX OR NOBODY
BELIEVES IN IT.
SO I THINK JUST TO SAY THAT THIS
CULTURE OF EVALUATING DATA AND
THE SCIENTIFIC AND PRECISE
ACQUISITION COLLECTION AND
ANALYSIS OF THAT DATA HAS TO
UNDERLIE ANY SYSTEM THAT IS
GOING TO ATTEMPT TO USE DATA TO
PROMOTE QUALITY IMPROVEMENT.
THAT'S THE BAGS OF THE
DISCUSSION.
AND THEN I'D SAY THE -- BASE OF
THE DISCUSSION -- THE QUALITY
INDEX THAT WAS RELATED IS
SOMETHING I IDENTIFIED AS
CREATING A LOT OF THE QUALITYIVE
PROVEMENT ACTIVITIES BUT SUMMERY
THERE ARE QUALITY IMPROVEMENT
INITIATIVES GOING ON THAT ARE
NOT DRIVEN SOLELY BY THIS INDEX.
ANY TIME YOU USE AN INDEX,
INDICATORS THAT ARE NOT INCLUDED
IN THE INDEX, MAYBE SOME KIND
FALL BY THE WAYSIDE.
SO INTENTIONAL CREATION OF THE
INDICATORS ON IT IS REALLY
CRITICAL.
SO LOOKING AT THE INDEX ITSELF,
IT DOES CHANGE FROM YEAR TO YEAR
BASED ON INTERNATIONAL STANDARDS
OF QUALITY MEASUREMENTS.
SO IN THE EARLY TWO THOUSANDS,
IT WAS MAINLY BASED ON PROCESS
MEASURES WHERE YOU SEE PEOPLE
WITH HYPERTENSION, WHERE YOU ARE
TAKING THEIR BLOOD PRESSURE,
WHERE YOU'RE DOING CERTAIN EXAMS
FOR PATIENTS WITH THOSE WHO HAVE
DIABETES.
WHAT PERCENT OF PATIENTS WITH
HYPERTENSION HAD A VISIT TO THE
CLINIC IN THE LAST YEAR?
AND THEN OVER THE LAST DECADE
THINGS SHIFTED TOWARDS OUTCOME.
DOES THAT PATIENT HYPERTENSION
HAVE GOOD BLOOD PRESSURE CONTROL
WHEN THEY SEE YOU IN THE CLINIC?
THERE WAS A QUESTION IN THE CHAT
ABOUT IS THIS EVALUATION
COMPULSORY OR VOLUNTARY?
IT'S A MANDATORY EVALUATION THAT
IS CONDUCTED BY THE NATIONAL
CENTRAL LEVEL GOVERNMENT
REACHING OUT TO EACH CLINIC,
GOING OUT PHYSICALLY THERE TO
SEE THE CLINIC AND EVALUATE.
AND THEN TO TALK ABOUT SOME OF
THE OTHER THINGS, INDICATORS IN
THE INDEX.
COST INTEGRATED INTO THE INDEX.
AND THE ANSWER TO THAT IS, NO.
BECAUSE MOST CLINICS ARE PAID OR
NEARLY ALL CLINICS ARE PAID ON A
CONFRONTATION BASIS WITH A
LITTLE BIT OF HISTORICAL PAYMENT
JUDGMENT AS WELL.
AND SO COST IS NOT REALLY
FACTORED IN.
PATIENT REPORTED EXPERIENCES AND
SATISFACTION ARE FACTORED INTO
THE MODEL.
THE EXACT STATISTICAL WAY THAT
THOSE PATIENT EXPERIENCES ARE
FACTORED IN DIFFERS FROM YEAR TO
YEAR BUT THAT IS ALSO A VARIABLE
ON WHICH THE CLINICS ARE GRADED
AND THOSE PATIENT EXPERIENCES
AND PATIENT SURVEYS ARE
CONDUCTED BY A SEPARATE
DEPARTMENT AND GROUP THAT DOES
PATIENT SATISFACTION EXPERIENCE
THROUGHOUT DIFFERENT SECTORS,
NOT ONLY IN HEALTH CARE.
THERE IS ALSO A QUESTION ABOUT
WHERE ONE COULD GET ACCESS TO
THEIR QUALITY INDEX AND SEE
EXACTLY WHAT METRICS THEY ARE
USING.
THE REPORTS AREN'T PUBLISHED
ABOUT TWO YEARS BEHIND THE
EVALUATION.
AND SINCE THE PANDEMIC
UNFORTUNATELY, I HAVE NOT BEEN
ABLE TO GET AHOLD OF ANY
ADDITIONAL COPIES.
SO THE EARLIEST ONE THAT I HAVE
OR THE LATEST ONE I HAVE IS FROM
ABOUT 2018 AND I BELIEVE THAT IS
AVAILABLE PUBLICLY ON GOOGLE IF
YOU JUST SEARCH --
[ SPEAKING SPANISH ]
YOU SHOULD BE ABLE TO FIND IT
AND HAVE IT COME UP.
BUT I WILL SAY THAT IT'S NOT A
COPY PASTE.
AND THEIR SPECIFIC QUALITY
MEASUREMENTS THAT THEY USE ARE
INCREDIBLY BASED ON WHAT THEY
HAVE THE CAPACITY TO MEASURE,
WHAT THEY HAVE THE CAPACITY TO
TRACK.
AND THEY HAVE MADE REAL
INTENTIONAL DECISIONS ABOUT
THEIR METRICS, WHAT IS RELEVANT
TO THEM, WHAT IS CULTURALLY
IMPORTANT, AND YOU DON'T WANT TO
HAVE SO MANY METRICS THAT PEOPLE
DON'T KNOW WHERE TO FOCUS THEIR
ATTENTION BUT YOU DON'T WANT TO
HAVE SO FEW METRICS THAT YOU'RE
MOVING OUT KEY AREAS.
SO IT'S A DELICATE BALANCE AND
CLEARLY A SUBJECT I'M VERY
PASSIONATE ABOUT AND I'M HAPPY
TO TALK WITH ANYONE OFF LINE IF
THEY HAVE MORE QUESTIONS.
>>MODERATOR: THANK YOU.
I DO HAVE A QUESTION ATTACHED TO
THAT ONE.
IT IS HOW -- YOU MENTIONED
PATIENT SATISFACTION.
HOW ABOUT ADVERSE EVENTS OR
PATIENT SAFETY?
ARE THEY PART OF THE METRICS?
>>MADELINE PESEC: THAT'S A
GREAT QUESTION.
I AM NOT AWARE OF ANY ORGANIZED
PATIENT-SAFETY ACTIVITIES THAT
ARE SEPARATE FROM KIND OF A
SPECIFIC REPORTING SYSTEM.
SO CERTAINLY PATIENTS INDIVIDUAL
ABILITY TO REPORT ADVERSE EVENTS
TO THE CLINIC OR TO THE THE
SOCIAL SECURITY AGENCY OVERALL.
BUT I DON'T THINK THOSE ARE
INCORPORATED AT THE CLINIC
LEVEL.
I'M NOT AS FAMILIAR WITH THE
HOSPITAL LEVEL.
I THINK THERE MAY BE SOME
ADDITIONAL THINGS THERE AT THE
HOSPITAL LEVEL IN TERMS OF
MORTALITY.
BUT AT THE PRIMARY CARE LEVEL,
THOSE AREN'T INCORPORATED INTO
THE INDEX, TO MY KNOWLEDGE.
>>MODERATOR: THANK YOU.
THERE IS ONE MORE QUESTION FOR
YOU AND ONE QUESTION FOR ALL OF
YOU SPEAKERS.
SO THE QUESTION SPECIFICALLY FOR
YOU, DR. MADELINE PESEC, IS
ABOUT THE TEAM-BASED CARE AND
THE QUESTION IS.
WHAT CAN WE LEARN FROM COSTA
RICA'S HEALTH SYSTEM ON HOW TO
PROMOTE TEAM-BASED CARE AND
TEAM-WORK PROCESSES.
FOR EXAMPLE, COMMUNICATION,
COORDINATION, COLLABORATION,
THAT LEAD TO BETTER HEALTH AND
CARE OUTCOMES?
>>MADELINE PESEC: THIS IS SUCH
AN IMPORTANT QUESTION.
AND I DON'T THINK THAT
COSTA RICA HAS ALL OF THE
ANSWERS TO THIS.
I THINK IT'S ACTUALLY AN AREA
WHERE COSTA RICA COULD IMPROVE
EVEN FURTHER.
I THINK THAT WHAT I HAVE SEEN AS
I VISITED DIFFERENT CLINICS IS
THE CLINICS WHERE THERE IS
REALLY A TEAM-BASED COHESIVE
STRUCTURE ARE THE CLINICS WHERE
THE TEAM MEMBERS ARE ALL
PHYSICALLY CO-LOCATED TOGETHER.
AND CLINICS WHERE THEY STRUGGLE
MORE WITH THE TEAM-BASED MODEL
ARE THOSE CLINICS WHERE ALL THE
COMMUNITY HEALTH WORKERS SIT IN
THEIR PART, ALL THE DOCTORS ARE
IN THEIR PART AND THE SECTS
SITED OVER HERE AND EVERYONE IS
GROUPED AT THE LEVEL OR WITHIN
THEIR DISCIPLINE AND NOT BY
TEAM.
AND I'LL ALSO MENTION THAT IF
YOU WANT TO PROMOTE TEAM
STRUCTURES, MANAGEMENT AT THE
TEAM LEVEL IS ALSO REALLY
IMPORTANT.
SO IF ALL OF YOUR MANAGEMENT
END, TEAM BUILDING ACTIVITIES
AND KIND OF DISCIPLINARY
STRUCTURES AND EDUCATION HAPPEN
AT THE DISCIPLINE LEVEL -- SO IF
ALL YOUR COMMUNITY HEALTH
WORKERS ARE BEING MANAGED BY
ANOTHER COMMUNITY HEALTH WORKER,
THAT IS NOT GOING TO BE AS
HELPFUL IN FOSTERING THAT
TEAM-BASED APPROACH TO PATIENT
CARE.
SO, I SEE IT WORK BEST WHERE
EVERYONE IS PHYSICALLY VERY
CLOSE TOGETHER AND THE DOCTOR
CAN LEAN OVER AND STAY, HEY, I
AM WORRIED ABOUT THAT PATIENT I
JUST SAW.
CAN YOU PUT HER ON YOUR LIST AND
MAYBE DO A HOME VISIT IN A WEEK
OR SO.
AND GENERALLY WITH TECHNOLOGY,
CHANGING AND ADAPTING AND DIRECT
TRONNIC MEDICAL SYSTEMS BEING
DEVELOPED, THERE ARE DEFINITELY
A LOT OF OPPORTUNITIES FOR MORE
VIRTUAL-BASED COMMUNICATION.
BUT I THINK I HAVE IMPRESSED
WITH THE POWER THAT PHYSICAL
CO-LOCATION CAN HAVE IN
COORDINATING CARE AND PROMOTING
TEAM-BASED MENTALITY.
>>MODERATOR: THANK YOU,
DR. MADELINE PESEC.
I HAVE ONE QUESTION FOR ALL OF
YOU.
AND IT'S, WHAT ARE THE MAIN
LESSONS LEARNED AND BEST
PRACTICES RELATED TO HEALTH CARE
RESEARCH OR EMBEDDING RESEARCH
INTO HEALTH CARE SETTINGS FROM
YOUR WORK IN LATIN AMERICA THAT
COULD BE APPLICABLE TO RESEARCH
INVOLVING U.S. HISPANIC LATINOS
OR RESEARCH IN U.S.
HISPANIC/LATINO COMMUNITIES?
>>DR. PIETTEE: I'LL JUMP IN.
SPECIFICALLY TO GIVE CREDIT TO
YOUR INSTITUTE, NIMHD.
THIS SORT OF OPPORTUNITY TO
DIALOGUE INTERNATIONALLY IS
EXTREMELY VALUABLE IT'S OFTEN
NOT DONE ENOUGH.
IT'S OFTEN SET IN BEST
PRACTICES, OFTEN WE ARE NOT
DOING SOME OF THE MOST IMPORTANT
CUTTING-EDGE RESEARCH BECAUSE WE
DON'T HAVE THIS SORT OF
COLLABORATION TO LEARN FROM ONE
ANOTHER.
AT THE OTHER TIMES, MAYBE WE ARE
ALL RE-CREATING THE SAME WHEEL
IN DIFFERENT PLACES.
SO SHARING AND CONTINUING TO
TALK, I'LL ADMIT I'M PERSONALLY
SOMEONE THAT I'M NOT GOOD AT
THIS.
I TEND TO JUST HAVE MY HEAD DOWN
AND FOCUSED ON MY IMMEDIATE
GOALS.
THIS SORT OF COLLABORATION IS
INCREDIBLY USEFUL.
SO DURING THIS -- DOING THIS
VIRTUALLY AND IF I MAY SAY,
PROVIDING OTHER OPPORTUNITIES IN
THE FUTURE FOR THE COLLABORATION
WOULD BE A WONDERFUL GOAL TO
PROMOTE THIS AS AN AGENDA BOTH
FOR IMMIGRANTS IN THE U.S. AND
AS A WIN-WIN FOR, INCLUDING THE
COUNTRIES WHERE MANY OF OUR
IMMIGRANTS ARE COMING FROM IN
LATIN AMERICA.
IN ADDITION TO THAT, I WOULD SAY
THERE IS NO SUBSTITUTE FOR
ACTUAL TRAVEL AND GOING TO MEET
ONE ANOTHER.
NOW I JUST GOT BACK FROM
HONDURAS.
IT WAS INCREDIBLY PRODUCTIVE
VISIT.
BUT THERE IS SO MUCH THAT YOU
CAN NEVER REALLY ACCOMPLISH
UNLESS YOU TRAVEL TO THE
COUNTRIES.
SO IF WE'RE TALKING ABOUT BEST
PRACTICES THAT WOULD BE WHAT
I'LL SAY IN A PARTLY HUMOROUS
WAY.
IS THAT IN MY EXPERIENCE, MANY
LATINO COLLEAGUES ARE NOT SO
GOOD AT E-MAIL CULTURE.
SO I WON'T GET AN E-MAIL BACK
AND THEN I'LL TRAVEL THERE AND
SAY, BOY, I HAVE BEEN E-MAILING
YOU AND THEY MIGHT SAY, YES,
I'VE SEEN THOSE E-MAILS.
BUT THERE IS NO RESPONSE.
[ LAUGHS ]
SO REALLY THE TRAVEL AND
ACTUALLY GETTING TRUST AND
RECOGNITION IN OTHER COUNTRIES,
OF COURSE THERE IS THAT SENSE
THAT THESE INTERNATIONAL
PROJECTS COME AND GO BUT NOTHING
REALLY CHANGES.
SO SHOWING THAT YOU HAVE A
COMMITMENT AND BRINGING BEST
PRACTICES AND REALLY MEAN TO
MAKE A DIFFERENCE, I THINK THAT
WOULD BE SOMETHING ELSE I WOULD
PRIORITIZE.
>>MODERATOR: THANK YOU,
DR. PIETTE.
>>EDUARDO RODRIGO
SAUCEDO-MARTINEZ: I CAN SAY ONE
OF THE LESSONS THE FOUNDATION
HAS COME UP AND APPLICABLE TO US
IN THE U.S., IS WE NEED TO FIND
DIFFERENT WAYS IN WHICH WE CAN
COMMUNICATE WITH PATIENTS.
ONE OF THE MOST CHALLENGING
REALLY -- I WOULD SAY THE
GREATEST CHALLENGE IS REALLY TO
FIND WAYS IN WHICH WE CAN
COMMUNICATE DIFFERENTLY, MEN TO
WOMEN, YOUNG POPULATION TO OLD
POPULATION, USING DETAILED
TOOLS, USING ALSO VIDEOS, USING
FACE-TO-FACE INTERACTIONS AND
UNDERSTANDING THAT AND
UNDERSTANDING THAT PEOPLE REALLY
HAVE THE LITTLE TO NO TIME TO
HAVE AN INTERACTION AND THAT YOU
NEED TO FIND CREATIVE WAYS IN
WHICH YOU CAN COMMUNICATE.
I WOULD SAY THAT IS THE MOST
VALUABLE LESSON.
AND I BELIEVE THAT IN THE END,
IMMIGRANTS ARE HARDWORKING
PEOPLE WHO REALLY WANT TO MAKE A
DIFFERENCE AND WANT TO TAKE CARE
OF THEMSELVES.
BECAUSE THEY MOST OF THE TIMES
ARE RELATED TO PEOPLE IN THEIR
OWN COMMUNITIES AND WANT TO
REALLY SPEND TIME WITH THEM.
SO THERE ARE WAYS IN WHICH YOU
CAN INTERACT AND ENGAGE THEM.
YOU JUST HAVE TO FIND A NEW
CREATIVE WAY OF DOING SO.
>>MODERATOR: THANK YOU, EDUARDO
RODRIGO SAUCEDO-MARTINEZ.
OTHERS?
YES?
DR. GUSTAVO GOSSLING?
>>GUSTAVO GOSSLING: SO I THINK
WE ARE DEALING HERE WITH AN
ISSUE OF ACCESS.
AND IN LATIN AMERICA, WE HAVE A
PROBLEM TO ACCESS CLINICAL
TRIALS AND INVESTIGATION FOR
PATIENTS.
HOWEVER, WE DO SEE AND WE DO
KNOW THAT SOME PATIENTS,
ESPECIALLY LATINO, AND
MINORITIES, THEY DO HAVE TROUBLE
TO ACCESS HEALTH CARE AS A WHOLE
EVERYWHERE.
BUT ALSO IN THE U.S.
I THINK WE NEED TO FOCUS OUR
EFFORTS IN ACCESS TO THOSE
POPULATIONS.
AND LATIN AMERICA HAS SOME GREAT
EXAMPLES OF PUBLIC HEALTH CARE
SYSTEMS THAT DO WORK AT
ESPECIALLY LOW COST.
BECAUSE THEY FOCUS ON THE
INDIVIDUALS AND ON THE MOST
COMMON DISEASE.
AND I THINK THESE ARE VERY
IMPORTANT LESSONS FROM LATIN
AMERICA TO THE REST OF THE
WORLD, HOW TO ORGANIZE, HOW THEY
ORGANIZE THEIR HEALTH CARE
SYSTEMS SO THAT THEY COULD BE
COST-EFFICIENT.
AND I BELIEVE WE IS HAVE SOME
EXAMPLES HERE.
>>MODERATOR: THANK YOU.
DR. MADELINE PESEC?
>>MADELINE PESEC: EXCELLENT.
I WOULD AGREE WITH MOST OF WHAT
HAS BEEN SAID AND CERTAINLY WHAT
DR. EDUARDO RODRIGO
SAUCEDO-MARTINEZ HAS BEEN SAYING
ABOUT THE POWER OF COMMUNITY.
AND I WOULD JUST ADD THAT WHILE
THERE IS A LOT OF CHALLENGE THAT
IS LATINO POPULATIONS IN THE
UNITED STATES BASE, THERE ARE
ALSO INCREDIBLE STRENGTHS THAT
THIS COMMUNITY HAS THAT WE CAN
REALLY CAPITALIZE ON.
SO, A STRONG SENSE OF COMMUNITY,
INTENSE ENGAGEMENT WITH
COMMUNITY ORGANIZATIONS WITH
CHURCHES, AND THEN I WOULD ALSO
ARGUE THAT MANY LATINO CULTURES
ALREADY HAVE A STRONG
APPRECIATION OF FOOD AS
MEDICINE.
ED AND A STRONG APPRECIATION OF
HOLISTIC WELL-BEING THAT PERHAPS
OTHER GROUPS OF AMERICANS DON'T
APPRECIATE.
AND SO WHEN I SAY TO MY LATINO
PATIENTS, WHAT YOU EAT MATTERS.
FOOD IS MEDICINE.
THEY ARE LIKE, MY MOM TOLD ME I
ALWAYS HAVE TO HAVE THIS KIND OF
FOOD WHEN I'M FEELING THIS WAY.
SO THERE IS HUGE OPPORTUNITIES
TO CAPITALIZE ON THAT.
SO I THINK SWITCHING THAT
NARRATIVE FROM THERE ARE
DISADVANTAGED GROUP THAT HAVE
DIFFERENT UNDERSTANDINGS OF
HEALTH.
INSTEAD SAYING, THIS IS A GROUP
THAT IS INCREDIBLY ENGAGED WITH
THE HEALTH CARE SYSTEM WHEN IT'S
ACCESSIBLE AND RESPECTFUL AND
THEY HAVE A STRONG COMMUNITY
TIES THAT WE CAN BUILD ON.
THEY ARE OPEN TO COMMUNITY
HEALTH WORKERS.
THEY ALREADY HAVE UNDERSTANDINGS
OF HOLISTIC MEDICINE AND THE
FACT THAT IT MAY BE NOT JUST A
PILL BUT IT MAY BE CBT THAT
HELPS YOU OVERCOME THE CHRONIC
KNEE PAIN, THAT YOU NEED TO
EXERCISE TO GET YOUR BLOOD
PRESSURE AND DIABETES UNDER
CONTROL.
SO I THINK THERE IS HUGE
OPPORTUNITIES FOR COMMUNITY
HEALTH WORKERS, WITH REACHING
OUT MORE AND BEING MORE
PROACTIVE INSTEAD OF JUST KIND
OF RECEIVING PEOPLE AS THEY COME
TO THE HEALTH CLINIC.
AND SO I THINK THAT THE THINGS
THAT COSTA RICA HAS SHOWN US IS
THE POWER OF TEAM-BASED CARE AND
THE POWER IN HEALTH EDUCATION
AND HEALTH PROMOTION AS
FOUNDATIONAL TO ANY IMPROVEMENT
ON NON-COMMUNICABLE DISEASES.
>>MODERATOR: THANK YOU,
DR. MADELINE PESEC.
ANY OTHER QUESTIONS FROM OTHER
SPEAKERS?
WE HAVE ONE MORE MINUTE BEFORE
THE BREAK.
OR ANYTHING ELSE THAT THE
SPEAKERS WOULD LIKE TO ADD THAT
THEY DIDN'T HAVE THE OPPORTUNITY
TO SAY?
>>I BELIEVE THERE IS A QUESTION
HERE?
>>I WAS JUST CLAPPING BECAUSE I
THINK THIS QUESTION WAS VERY,
VERY NICE.
I WOULD LIKE TO KNOW, MAYBE FOR
YOU GUSTAV OH, WHAT YOU THINK IS
THE ROLE OF THE GOVERNMENT IN
TERMS OF FACILITATING ALL OF
THIS INTERACTIONS BETWEEN THE
U.S. AND LATIN AMERICA?
>>THAT IS THE MILLION DOLLAR
QUESTION, I BELIEVE.
WE NEED MORE THAN A FEW MINUTES
TO GET INTO THAT.
IT'S A VERY DIFFICULT QUESTION.
I COULD SAY THAT REALLY GETTING
TO KNOW THESE EXPERIENCES AND
KNOWING THAT THERE IS AN AREA OF
OPPORTUNITY, I THINK THAT IS A
VERY VALUABLE FIRST STEP AND THE
WORK THAT WE ARE DOING IN THIS
WORKSHOP IS ONE FANTASTIC FIRST
STEP IN UNDERSTANDING WHAT IS
OUT THERE.
I COULD SAY THAT WOULD BE ONE,
PERHAPS NOT THE GOVERNMENT ROLE
AS THE EXECUTIVE BRANCH, BUT
CERTAINLY THE ROLE OF NIH IS
VALUABLE IN THAT REGARD.
>>MODERATOR: THANK YOU, EDUARDO
RODRIGO SAUCEDO-MARTINEZ AND
THANK YOU TO ALL THE PANELISTS
OF THIS TOPIC.
IT'S 10:15 EASTERN TIME.
WE ARE NOW TAKING A BREAK.
SEE YOU LATER.
AND THANK YOU.
>>MODERATOR: NEXT WATCH THE
VIDEOS.
GREETINGS, I'M A PROGRAM
OFFICIAL AT THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES.
A MODERATOR FOR TODAY'S SESSION
ON BEST PRACTICES AND LESSONS
LEARNED, EFFECTIVE
COMMUNITY-ENGAGED RESEARCH.
DURING THIS SESSION, YOU WILL BE
VIEWING FOUR PRESENTATIONS BY
DOCTORS TATIANA VIDAURRE, JOHN
PIETTE, CARMEN VELEZ VEGA AND
DR. MAESTHO.
ENJOY THE PRESENTATIONS.
>>THANK YOU VERY MUCH FOR THIS
OPPORTUNITY TO TALK ABOUT CANCER
RESEARCH.
LATIN AMERICA POPULATION IS MIX
OF NATIVE-AMERICANS, EUROPEANS
AND AFRICAN ANCESTRY AND
TECHNOLOGY ADVANCES IN GENETICS
AND GENOMICS FOR CANCER SHOULD
BE IMPORTANT.
THE CANCER INCIDENTS IN LATIN
AMERICA IN GENERAL -- THE
MORTALITY IS SIGNIFICANTLY
HIGHER.
50% OF THE LATIN-AMERICAN
POPULATION DOES NOT HAVE ACCESS
TO HIGH-COST DRUGS, HEALTH CARE
COVERAGE IS NOT THE RULE IN
LATIN AMERICA AND EVEN THE --
RESEARCH IS A CHALLENGE IN LATIN
AMERICA COUNTRIES.
CANCER INCREASE IN THE
DEVELOPING COUNTRY.
THERE IS A SPECIAL CONCERN ABOUT
CANCER AMONG THE PEOPLE IN UNDER
RECOMMENDED RESEARCH ANALYSIS.
CANCER NEW CASES MORE THAN
70,000 PER YEAR, MORE THAN 4000
CANCER DEATHS PER YEAR.
MORE THAN 1/3 PERSONS LIVING
WITH CANCER AND MASSIVE DISEASE
75%-Y%.
NATIVE COMMUNITIES VULNERABILITY
DISADVANTAGED POPULATION, LACK
OF DATA, INNOVATION AND
TECHNOLOGY.
CANCER TREATMENT IN LATIN
AMERICA IS A CHALLENGE BECAUSE
OF THE BIOLOGICAL COMPLEXITIES
OF CANCER AND THE NEW TECHNOLOGY
FOR MOLECULAR APPROACH IN
CANCER.
MOLECULAR BIOLOGY ADVANCE IS
IMPORTANT FOR RESEARCH.
THE NATIONAL CANCERINS NEWT PERU
IS A INSTITUTIONAL CANCER CARE
AND A HUB OF THE PATIENTS ARE
FROM THE PROVINCE OF THE
COUNTRYSIDE.
THIS IS THE POPULATION SITE --
THIS IS INDIGENOUS COMMUNITY IN
THESE PEOPLE WITH CONDITIONS,
REACH A HIGHER PERCENTAGE IN
LIMA, 23%.
THEY --
[ SPEAKING SPANISH ]
THE LATIN POPULATION THAT SELF
IDENTIFIES AS INDIGENOUS OR
ORIGINALLY FROM AMAZON ARE
AMAZONIANS AND -- IN OUR
INSTITUTE MAIN CENTER OF
EXCELLENCE FOR ONCOLOGY
RESEARCH.
THESE NATIVE COMMUNITIES COME
INTO OUR INSTITUTE BECAUSE THESE
INSTITUTES WE HAVE IN --
[ SPEAKING SPANISH ]
AND WE STUDY CANCERS.
-- PROMOTING GLOBAL COOPERATION
IS MAKING ROOM FOR GENETIC AND
GENOMIC RESEARCH IS IMPORTANT.
IT WILL HAVE THESE BIOMARKER
NETWORKS -- SOUTH AMERICAN HAVE
THESE OPPORTUNITY TO CONNECT OUR
DIFFERENT COUNTRIES AND THE
CANCER RESEARCH -- CALLING FOR
INNOVATION.
IN THIS MODEL WE HAVE
COOPERATION FOR EXAMPLE U.S. AND
WE CAN SEE THE RESULTS IN BREAST
CANCER ETHNICITY.
HIGHER PROPORTION WAS ASSOCIATED
WITH HIGHER INCIDENT OF HER2
POSITIVE CANCER AND WE HAVE SOME
HIGHER FREQUENCY OF HER2 AMONG
LATINS IN PERU TO THE SAME
INFORMATION.
IT IS ESSENTIAL FOR THIS MAPPING
OUR COUNTRY WE HAVE -- THREE
MORE INSTITUTES IN OUR COUNTRY.
ONE OF THE MAIN INSTITUTES IN
LIMA BUT WE HAVE -- AND THE
THIRD --
[ SPEAKING SPANISH ]
AND WE CAN UNDERSTAND THESE
POPULATION OF THE NATIVE
COMMUNITY BECAUSE OF THE
DISTRIBUTION OF BREAST CANCER --
HIGHLY INDIGENOUS -- MORE LIKELY
TO BE DIAGNOSTIC WITH CANCER AND
LES LIKELY COM FIRED WOMAN FROM
SIERRA REGION.
THIS INFORMATION DIFFERENCE IN
ACCESS TO BREAST CANCER
AWARENESS -- IN THIS STUDY WE
ANALYZE COLLABORATIVE APPROACH,
DIFFERENTS OF PROTECTIVE GENES
AND IN THIS POPULATION OF
PATIENT WE HAVE INDIGENOUS WELL
RESPECTED POPULATION FOR BREAST
CANCER.
-- IN INDIGENOUS AMERICAN
ANCESTRY TOO BREAST CANCER
DISPARITY -- ANALYZING RISK FOR
CANCER PREVENTION.
DIFFERENT PROPORTION OF
MOLECULAR SUBTYPE ACCORDING TO
ANCESTRY COMPONENT.
WE CONTINUE ANALYZING THESE
LARGE SAMPLE SIZE POPULATION.
OUR INSTITUTE PERUVIAN RESEARCH
IN PERU IS ANALYZING TO THIS
HIGH-QUALIFIED GROUP TO
UNDERSTAND CARCINOMA IS A
DIFFERENT DISEASE IN PERU.
THIS COMBINATION IS INTEGRATED
IN RESEARCH AND WE MAINTAIN
STUDIES IN THIS FIELD OF CANCER
INCLUSIVE YOUNG RESEARCHERS AND
STUDENTS.
WE ARE ANALYZING SAMPLES FROM
PATIENT FROM COMMUNITIES.
IN THIS PLATFORM WE HAVE MAIN
BANK, BIOBANK THAT NOW IS IN
PERU AND THIS IS WELL
IMPLEMENTED.
BUT WE EDUCATIONAL PLATFORM WE
LEARN THAT IT IS IMPORTANT TO
ACQUIRE TOOLS OF PRECISION
MEDICINE IN ONCOLOGY.
THAT'S WHY WE NEED TO TRANSFER
THIS KNOWLEDGE AND MARKERS OF
ANCOLOGY WITH UNIVERSITY.
IT IS IMPORTANT TO PROMOTE THESE
EDUCATIONAL PLATFORM.
PEPATO CELLULAR CARCINOMA IN
PERU, WE HAVE MINORITY OF OUR
PATIENTS -- THIS IS MORALITY AND
CLINICAL PATHOLOGY ANALYSIS --
HUGE TUMOR WE HAVE SURGERY
APPROACH FOR THIS KIND OF HUGE
TUMORS.
MOLECULAR CLASSIFICATION IS
DIFFERENT.
PERU IS SPECIAL CLASSIFICATION.
MOLECULAR SIGNATURE IS TOO
DIFFERENT INCLUDING 97% AMERICAN
INDIAN LINEAGE.
PERU HAS AMONG HIGHER RATE OF
NATIVE PEOPLE IN ITS POPULATION.
THIS HAS IMPACT ON GENOMIC
ARCHITECTURE OF PERUVIAN PEOPLE.
IN COLLABORATIVE RESEARCH CAN BE
IMPORTANT TO DO NEW PROJECTS FOR
CANCER DISPARITIES BECAUSE WE
HAVE ACCESS TO NATIVE COMMUNITY.
THIS IS WHY WE HAVE IMPORTANT
INSTITUTIONS LIKE CANCER CENTER
AND UNIVERSITY AND WE HAVE
REPORTS FROM FRENCH RESEARCHER
AND LOCAL RESEARCH INFORMATION.
OPPORTUNITIES FOR COLLABORATION
DUE TO HIGH BURDEN OF THIS
DISEASE IN THE COUNTRY AND THE
HIGH VOLUME OF PATIENTS
ADMITTED, INE!
A STRATEGIC CENTER TO PERFORM
HIGH-QUALITY RESEARCH IN CANCER.
BIOBANK AND CANCER RESEARCH HAVE
INCLUDE IN THE NATIONAL CANCER
CONTROL PLAN FOR BUILDING
CAPACITY IN MOLECULAR ONCOLOGY.
NATIONAL AND INTERNATIONAL
COOPERATION NETWORK FOR RESEARCH
IN PREVENTION AND CANCER CONTROL
ARE IMPORTANT TO IMPROVE
DISPARITIES.
I IN CONCLUSIONS, INEN AS WELL
AS TWO REGIONAL CANCER CENTERS
IN PERU ARE NOTATED ON THE
PERUVIAN COASTAL REGION AND ONE
REGIONAL CANCER CENTER ON THE
SIERRA REGION AND WE HAVE
CONCENTRATED PATIENTS IN THESE
DIFFERENT INSTITUTES THAT WE CAN
ESTABLISH THESE INDIGENOUS
AMERICAN TOWNS.
THE SIERRA REGION IS CLOSER TO
THE PROXIMITY TO THE COAST THAN
THE SELVA REGION AND WILL HAVE
TO TRAVEL FROM FATHER DISTANCE
AND POTENTIALLY EXPERIENCE
GREATER BARRIERS FOR ACCESS TO
RESEARCH THAN THE PATIENT WHO
TRAVEL FROM THE SIERRA REGION.
GIVEN THAT THE AVERAGE
PROPORTION OF INDIGENOUS
AMERICAN ANCESTRY IN PERU IS
70-80% IT IS REASONABLE TO
ASSUME THAT THE PATIENT WHO
RESIDE IN WELL-KNOWN INDIGENOUS
POPULATION ARE LIKELY TO HAVE A
HIGH AVERAGE PROPORTION OF
INDIGENOUS AMERICAN ANCESTRY.
THANK YOU VERY MUCH FOR YOUR
ATTENTION.
>>JOHN PIETTE: HELLO, WHAT I'D
LIKED TO DO IN THE BRIEF AMOUNT
OF TIME I HAVE STUDY TO SHARE
WITH YOU SOME OF THE INSIGHTS
THAT WE HAVE GAINED FROM WORKING
WITH THE COMMUNITIES ACROSS
LATIN AMERICA IN TERMS OF SOME
OF THE FEATURES OF
COMMUNITY-BASED INTERVENTIONS
THAT THEY WANT AND THAT ADDRESS
SOME OF THE MOST IMPORTANT
PRIORITIES THAT THEY HAVE FOR
IMPROVING THE HEALTH AND PUBLIC
HEALTH OF THEIR COMMUNITIES, BE
THEY IN COUNTRIES LIKE HONDURAS
OR MEXICO OR BOLIVIA OR AFTER
IMMIGRATING TO THE UNITED
STATES.
TELEHEALTH INTERVENTIONS ARE
MORE AND MORE FEASIBLE IN LATIN
AMERICA AND OTHER LOW AND
MIDDLE-INCOME COUNTRIES AROUND
THE WORLD.
I RECENTLY RETURNED FROM
HONDURAS AND IT WAS CONFIRMED TO
ME AGAIN THAT AT LEAST IN ALDBUT
THE MOST RURAL AREAS,
INDIVIDUALS NOT ONLY HAVE A CELL
PHONE BUT INCREASINGLY THEY HAVE
ACCESS TO A SMARTPHONE THAT THEY
ARE USING WHATSAPP.
THAT'S REALLY GOOD NEWS BECAUSE
WITHOUT GOING INTO DETAILS,
WHATSAPP AND TWILLS ANOTHER
LARGE TELECOMMUNICATION COMPANY
SERVING BUSINESSES WITH
TEXT-MANAGED SUPPORT SERVICES.
THEY PARTNERED AND PARTNERING
WITH US IN WAYS TO DEVELOP
INTERVENTIONS SO THAT WE CAN,
FOR EXAMPLE, DO TO-WAY TEXT
MESSAGING AND SEND TENTHS
EVERTEXT AND REMINDERS AND
MANAGE PATIENT SYMPTOMS AND GET
FEEDBACK AND DIRECT HEALTH
SYSTEMS AND COMMUNITY-BASED
ORGANIZATIONS TO TREAT PATIENTS
MORE EFFECTIVELY.
SO, TEXT MESSAGING IS SOMETHING
THAT WORKS.
TELEPHONE CALL WORKS FOR
LATIN-AMERICAN POPULATIONS.
BUT ALSO IT IS SOMETHING THAT IS
MORE AND MORE FEASIBLE.
AND IF PEOPLE HAVE QUESTIONS, WE
CAN TALK ABOUT THAT DURING THE
QUESTION-AND-ANSWER PERIOD.
TELEMEDICINE AND INTERVENTION IS
SOMETHING THAT HAS INTERESTED US
FOR A VERY LONG TIME.
WHAT YOU SEE HERE IS AN
ILLUSTRATION OF ONE OF OUR
EARLIER STUDIES WHERE WE SET UP
A PLATFORM AT THE UNIVERSITY OF
MICHIGAN.
IN THIS CASE, TO TARGET AND
REACH COMMUNITY MEMBERS WITH
DIABETES AND COMMUNITIES AROUND
HONDURAS AND SERVED BY COMMUNITY
CLINICS.
THIS PARTICULAR INTERVENTION
USED AUTOMATED CALLS AND
PATIENTS WOULD GET REGULAR
AUTOMATED CALLS ON THEIR PHONE
AND RESPOND TO RECORDED MESSAGES
USING THEIR TOUCH TONE PHONE AND
BASED ON THAT INFORMATION, THEY
WOULD GET TARGETED AND TAILORED
SELF-MANAGEMENT SUPPORT
INFORMATION AND IMPORTANTLY IF
THEY REPORTED SOMETHING
PARTICULARLY CONCERNING, AN
ALERT WOULD GO BACK TO THE
CLINIC IS.
AND THE RIGHT HAND OF THE SCREEN
HERE IS THAT FIRST ALERT.
AT THAT TIME THOSE ALERTS WERE
PROVIDED TO CLINICIANS VIA FAX.
THIS WAS THE FIRST FAX TO COME
OUT OF THAT CLINIC'S FAX
MACHINE.
YOU CAN SEE THAT THERE WAS SO
MUCH EXCITEMENT ABOUT THIS
ADVANCE IN THEIR ABILITY TO
SUPPORT PATIENTS WHILE IN
COMMUNITIES RATHER THAN HAVING
THEM COME IN FOR A FACE-TO-FACE
VISIT.
THE FAX WAS SIGNED BY THE
DOCTORS, BY THE NURSES, BY THE
CHILDREN OF ALL THOSE
CLINICIANS.
THIS FAX HANGS IN MY OFFICE AT
THE UNIVERSITY OF MICHIGAN AS A
GREAT SOURCE OF INSPIRATION.
OF COURSE IN THAT PARTICULAR
STUDY WE DID MORE THAN RELY ON
THE INFORMAL FEEDBACK OF THOSE
CLINICIANS AND COMMUNITY MEMBERS
ABOUT WHETHER THE INTERVENTION
WAS VALUABLE.
WE THINK IT'S IMPORTANT TO
CONTINUALLY IN COMMUNITIES WORK
TO DO SYSTEMATIC EVALUATIONS
INCLUDING PILOTS.
LIKE THIS WAS A PILOT STUDY.
IN THIS PARTICULAR STUDY, WE
SURVEYED PARTICIPANTS WHO WERE
RECEIVING THESE AUTOMATED
SELF-MEDICINE SUPPORT CALLS AND
DESPITE VERY LIMITED FORMAL
EDUCATION, PARTICIPANTS TOLD US
THAT THE CALLS WERE EASY TO
RESPOND TO, THAT THEY HELPED
THEM A LOT.
AND WHAT WAS REALLY ENCOURAGING
IS THAT MANY PATIENTS HAD
SIGNIFICANT DECREASES OR
IMPROVEMENTS IN THE HEMOGLOBIN
A1C, MEASURE OF GLYCEMIC
CONTROL, DURING THE
INTERVENTION.
THAT WAS VERY ENCOURAGING TO US.
WE FOLLOWED UP ON THIS
PARTICULAR STUDY WITH A
RANDOMIZED INTERVENTION WITH A
CONTROL GROUP.
BECAUSE SINGLE GROUP STUDIES ARE
NOT A PARTICULARLY RIGOROUS OR
HIGH-QUALITY OF EVIDENCE.
SO WE CONDUCTED A RANDOMIZED
TRIAL, IN THIS CASE WITH
COMMUNITIES NOT ONLY IN HONDURAS
BUT BOTH IN HONDURAS AND IN
MEXICO.
THIS WAS A STUDY THAT INCLUDED
PATIENTS WITH POORLY-CONTROLLED
HYPERTENSION.
ONCE AGAIN, LIKE WITH OUR
DIABETES INTERVENTION, PATIENTS
WERE RECEIVING REGULAR AUTOMATED
CALLS COMING FROM MICHIGAN TO
THEIR STANDARD CELL PHONES.
AND BASED ON THAT INFORMATION,
CLINICIANS COULD GET ALERTED.
PATIENTS COULD GET MORE ACCESS
TO SELF-MANAGEMENT AND HEALTH
EDUCATION ADVICE.
THE RESULTS OF THE TRIAL WERE
REALLY QUITE ENCOURAGING TO US.
COMPARED TO RANDOMIZED CONTROL
PATIENTS, PATIENTS IN THAT
INTERVENTION GROUP WHO HAD THIS
TELEPHONIC SUPPORT HAD ON
AVERAGE ABOUT A 4 POINT DROP IN
THEIR SYSTOLIC BLOOD PRESSURE,
WHICH IS QUITE RESPECTABLE
IMPROVEMENT IN SYSTOLIC BLOOD
PRESSURE CONTROL.
WE LEARNED SOMETHING ELSE THAT
WAS REALLY PARTICULARLY
IMPORTANT IN OUR SUBSEQUENT
WORK.
THAT IS THAT WHEN WE FOCUS ON
THE SUBSET OF PATIENTS THAT IT
IS WE MIGHT CONSIDER THE MOST
VULNERABLE, PATIENTS WITH LOW
LITERACY ENTERING THE STUDY,
LOWER LEVELS OF EDUCATION,
PATIENTS THAT TOLD US THEY
DIDN'T UNDERSTAND THEIR
MEDICATIONS, THAT THEY WERE
HAVING TROUBLE FOLLOWING THEIR
SELF-MANAGEMENT.
THAT WAS TWO-THIRDS OF THE
OVERALL SAMPLE.
IN THAT PARTICULAR SUBGROUP OF
PATIENTS, THERE WAS A VERY
SIGNIFICANT IMPROVEMENT IN THEIR
SYSTOLIC BLOOD PRESSURE WHEN
THEY HAD ACCESS TO THE
ADDITIONAL INFORMATION VIA
TELEHEALTH OR AUTOMATED
TELEHEALTH SUPPORT SYSTEM.
SO THAT WAS REALLY ENCOURAGING
TO US.
IN ADDITION, THOSE INTERVENTION
PATIENTS WERE MORE LIKELY TO
TELL US THAT THEIR OVERALL
HEALTH WAS BETTER AFTER
RECEIVING THE INTERVENTION,
FEWER PROBLEMS TAKING MEDICATION
AND SOMETHING WE SEEN REPEATEDLY
IS THAT THEY ALSO TOLD US THAT
THEY HAD FEWER DEPRESSIVE
SYMPTOMS.
SO WE REALLY CENTERED OUR WORK
ON MENTAL HEALTH IN COMMUNITIES
OVER RECENT YEARS, SPECIFICALLY
AROUND WOMEN THAT ARE
EXPERIENCING VIOLENCE.
SO WE REALLY TRIED TO
CONTINUALLY DO THIS SORT OF
COMMUNITY ENGAGED PILOTING AND
FEASIBILITY AND KIND OF
ENGAGEMENT WORK WITH
COMMUNITIES.
ANOTHER PLACE THAT WE HAVE
WORKED FOR A NUMBER OF YEARS IS
IN BOLIVIA.
THIS IS A WOMAN THAT WAS
PARTICIPATING IN ONE OF OUR
STUDIES MANY YEARS AGO.
SHE IS FROM A COMMUNITY IN --
INDIGENOUS COMMUNITY AROUND THE
CAPITOL OF BOLIVIA.
BECAUSE PATIENTS ARE GETTING
REGULAR AUTOMATED CALLS.
ONE THING WE CAN DO TO KIND OF
EVALUATE ENGAGEMENT AND
FEASIBILITY OF COMMUNICATING
WITH PARTICIPANTS IN THIS WAY,
IS WE CAN MONITOR THE EXTENT TO
WHICH PATIENTS ARE SUCCESSFULLY
COMPLETING THOSE CALLS.
I MEAN, THEY GET THEM ABOUT
EVERY DAY OR MAYBE ONCE A WEEK.
WE CAN LOOK AT THE PROBABILITY
THAT THEY ARE COMPLETING CALLS
AND WHETHER THAT LIKELIHOOD OR
THE NUMBER OF CALLS PATIENTS ARE
COMPLETING VARIES ACCORDING TO
SUBGROUPS OF THAT POPULATION.
SO WHAT YOU SEE HERE FOR EXAMPLE
IS THAT CALL COMPLETION RATES
WAS ROUGHLY CONSISTENT IN
BOLIVIA IN THIS PARTICULAR PILOT
STUDY UNTIL PATIENTS WERE ABOUT
65 YEARS OLD.
AND FOR THE OLDER PARTICIPANTS
IN THIS STUDY, COMPLETION RATES
WENT DOWN SIGNIFICANTLY.
IT WAS SIGNIFICANTLY WORSE.
IN OTHER WORDS, PATIENTS THAT OR
PARTICIPANTS 70 OR 75 WERE MUCH
LESS LIKELY THAN YOUNGER
PATIENTS TO ENGAGE WITH THE
INTERVENTION.
SO WORKING WITH THOSE
COMMUNITIES, WE TRIED TO FIGURE
OUT WHAT WE COULD DO AND WE
LEARNED SOMETHING ELSE THAT WAS
VERY IMPORTANT.
THAT WAS THE POSSIBILITY OR THE
POSSIBLE BENEFITS OF INCLUDING
THE COMMUNICATION LOOP NOT JUST
THE PATIENT AND THE CLINICIAN,
BUT MAYBE AN ADULT CHILD OR
OTHER TRUSTED FAMILY MEMBER.
SO WE DEVELOPED A SYSTEM WHERE
PATIENTS WOULD GET THESE REGULAR
SELF-MANAGEMENT ASSISTANCE CALLS
BUT BESIDES WHAT THEY WERE
REPORTING, FAMILY MEMBERS COULD
GET FEEDBACK AT THAT TIME.
IT WAS OFTEN BY AN E-MAIL OR A
TEXT MESSAGE TO THOSE FAMILY
MEMBERS.
SO THOSE FAMILY MEMBERS FELT IN
THE LOOP AND THEY WOULD SUPPORT
THE PATIENTS ENGAGEMENT AND
IDENTIFY WHEN PATIENTS WEREN'T
BEING ENGAGED AND HELP THEM
TROUBLESHOOT PROBLEMS, ET CET
ET CETERA.
WE CONDUCTED A PILOT OF THAT
INTERVENTION AMONG PATIENTS
DIABETES AND HYPERTENSION IN LA
PAS.
ALL THE PARTICIPANTS IN THAT
PILOT STUDY WERE GETTING THESE
REGULAR SELF-MANAGEMENT
ASSISTANCE CALLS.
BUT, IN ONLY ONE OF THE TWO
INTERVENTION GROUPS WAS THIS
TRUSTED FAMILY MEMBER GETTING
FEEDBACK ABOUT HOW THE PATIENT
WAS DOING.
OUR HYPOTHESIS WAS THAT FAMILY
ENGAGEMENT WOULD SUPPORT THE
PATIENT'S ABILITY TO ADHERE TO
CONTINUE TO BE ENGAGED
SUCCESSFULLY IN THE
INTERVENTION.
THAT'S EXACTLY WHAT WE FOUND.
SO WHAT YOU SEE HERE IS THAT IN
THE OVERALL SAMPLE, AFTER A
NUMBER OF WEEKS OF THIS SORT OF
INTERVENTION, THE GROUP IN BLUE
IS THE GROUP THAT HAD FAMILY
MEMBERS GETTING FEEDBACK ABOUT
HOW THEY WERE DOING AND COMPARED
TO THE ORANGE BAR YOU SEE HERE
ON THE RIGHT, WHEN FAMILY MEMBER
WAS GETTING FEEDBACK, PATIENTS
WERE SUBSTANTIALLY MORE LIKELY
TO COMPLY WITH THE INTERVENTION.
BUT JUST LIKE IN OUR STUDY IN
HONDURAS OR HONDURAS AND MEXICO
FOR PATIENTS WITH HYPERTENSION,
WE FOUND THAT THE MOST
VULNERABLE PATIENTS, THE
PATIENTS MOST CONCERNED ABOUT,
THE MOST INTERESTED IN SERVING.
THOSE PATIENTS BENEFITED THE
MOST FROM THIS SORT OF FAMILY
ENGAGEMENT.
LET ME SHOW YOU WHAT THAT LOOKS
LIKE.
IN THE SUBSET OF PARTICIPANTS
THAT IDENTIFIED AS INDIGENOUS,
IN THIS CASE, LIKE THE WOMAN IN
THE PICTURE YOU SAW EARLIER,
WHEN THOSE PATIENTS DID NOT HAVE
A FAMILY MEMBER IN THE
COMMUNICATION GROUP, THEY REALLY
DID QUITE POORLY.
THEY ONLY COMPLETED ABOUT 19% OF
THEIR CALLS.
IN CONTRAST, WHEN FAMILY MEMBERS
WERE INCLUDED, THOSE INDIGENOUS
PARTICIPANTS COMPLETED 58% OF
THEIR CALLS.
SENATORIALLY, AMONG PATIENTS
THAT TOLD US THAT THEIR
MEDICATION ADHERENCE WAS NOT
THAT GOOD, WHEN THEY ENROLLED IN
THIS STUDY, IF FAMILY MEMBERS
WERE NOT INCLUDED IN THE
COMMUNICATION LOOP, THEY
COMPLETED 28 OR 29% OF THEIR
CALLS.
IN CONTRAST THEY COMPLETED 62%
WHEN FAMILY MEMBERS WERE -- WHEN
INFORMATION WAS SHARED WITH
FAMILY MEMBERS.
AND FINALLY, THOSE LOW LITERACY
PATIENTS OFTEN THE MOST
CONCERNED ABOUT, THEY REALLY
INCLUSION OF FAMILY MEMBERS TO
HELP THEM ENGAGE WITH THE
INTERVENTION, TRUST THE
INTERVENTION, TROUBLESHOOT
PROBLEMS, UNDERSTAND WHAT THE
MEANING OF THOSE CALLS FOR THEM
AND FOR THE FAMILY AND FOR
SELF-MANAGEMENT.
THAT FAMILY ENGAGEMENT TRIPLED
THE NUMBER OF TIMES IN WHICH
PATIENTS COMPLETED THE
INTERVENTION.
WE LEARNED SOMETHING REALLY
IMPORTANT FROM THIS ABOUT THE
POTENTIAL ROLE OF FAMILY IN
INTERVENTIONS FOR PEOPLE IN
COMMUNITIES, ESPECIALLY SOME OF
THE MOST VULNERABLE SUBSETS OF
HISPANIC AND LATINO PEOPLE IN
LATIN AMERICA AND IN THE U.S.
AS I MENTIONED, WE REALLY
CENTERED MENTAL HEALTH AS REALLY
A FOCUS OF OUR WORK.
AND I'LL SHARE WITH YOU SOME
DATA CONCERNING DATA FROM THE
CDC, MORBIDITY AND MORTALITY
WEEKLY REPORT.
THIS WAS A
NATIONALLY-REPRESENTATIVE SURVEY
IN THE UNITED STATES DURING THE
COVID PANDEMIC.
IN WHAT THIS REPORT SHOWED IS
THAT HISPANIC/LATINO PEOPLE WERE
MORE LIKELY TO BE REPORTED
SIGNIFICANT SYMPTOMS OF ANXIETY
THAN WHITE NON-HISPANIC, LATIN
HISPANIC OR ASIAN PATIENTS.
HISPANICS WERE MORE LIKELY TO
REPORT SYMPTOMS OF DEPRESSION.
MORE LIKELY TO REPORT SUICIDAL
THOUGHTS, MORE LIKELY TO REPORT
INCREASING THEIR ALCOHOL INTAKE.
THEY WERE MORE LIKELY TO REPORT
CONCERNS ABOUT COVID.
SO MENTAL HEALTH IS CLEARLY
SIGNIFICANT AND WE SEE THAT WITH
IMGRANT POPULATIONS COMING FROM
REALLY QUITE DISTRESSING
ENVIRONMENTS WHERE THEY MIGHT BE
COMING TO THE U.S. WITH TRAUMA
FROM THEIR HOME COUNTRY OR
TRAUMA FROM THE PROCESS OF
ENTERING THE UNITED STATES.
AND SO WE ARE FOCUSING ON THESE
INTERVENTIONS LISTENING TO THOSE
COMMUNITIES AND FOCUSING ON
THESE PROBLEMS OF MENTAL HEALTH
SPECIFICALLY DEPRESSION, ANXIETY
AND PTSD AMONG WOMEN WE HAVE AN
ONGOING PROJECT FOR WOMEN IN
HONDURAS.
IT'S REALLY QUITE RELEVANT AND
WE ARE VERY ANXIOUS TO EXPAND
SOME OF THESE PROGRAMS TO SOME
OF THOSE IMMIGRANTS THAT MIGHT
BE EXPERIENCING TRAUMA IN THE
UNITED STATES.
THE LAST THING I WANTED TO
MENTION VERY BRIEFLY IS THAT IN
ADDITION TO CONTINUING A
DIALOGUE WITH COMMUNITY
PARTNERS, IT'S GOOD TO USE THESE
COMMUNITY-BASED INTERVENTION
PRACTICES SORT OF THE BEST
PRACTICES FOR ADOPTING AND
ADAPTING AN INTERVENTION FOR A
NEW CONTEXT.
THAT IS WHAT WE ARE DOING WITH
THIS ONGOING WORK WITH COMMUNITY
PARTNERS AROUND MENTAL HEALTH,
TELEHEALTH INTERVENTIONS.
SPECIFICALLY WE ARE TAKING THESE
EVIDENCE-BASED PROGRAMS LOOKING
AT EVERYTHING, TRAINING,
SUPERVISION, MATERIALS AND
DELIVERY AND WE ARE ASKING TWO
QUESTIONS.
FIRST WHAT NEEDS TO BE MODIFIED
TO MAKE THE PROGRAM WORK IN THIS
NEW CONTEXT IN ENGAGING
COMMUNITY PARTNERS TO HELP
PROFESSIONALS ET CETERA?
WE ARE ALSO ASKING THE EXPERTS
WHAT ARE THE KEY ELEMENTS THAT
WE NEED TO MAINTAIN TO ENSURE
THAT THESE PROGRAMS HAVE KEY
FEATURES THAT MAKE THEM
EFFECTIVE AND WILL CONTINUE TO
MAKE THEM EFFECTIVE FOR HISPANIC
AND LATINO PEOPLE.
THANK YOU.
>>MY NAME IS CARMEN VELEZ VEGA,
THE DIRECTOR OF COMMUNITY
ENGAGEMENT CORE FOR THE CENTER
OF COLLABORATIVE RESEARCH AND
HEALTH DISPARITIES AT THE
UNIVERSITY OF PUERTO RICO ON
MEDICAL SCIENCES CAMPUS.
I'M HERE TO TALK ABOUT
COMMUNITY-ENGAGED RESEARCH.
THE DAY OF THE DEAD.
THIS IS A CELEBRATION THAT IS
COMMEMORATED THROUGHOUT LATIN
AMERICA.
I DEDICATE THIS PRESENTATION TO
OUR ANCESTORS THAT CAME BEFORE
ME AND MADE IT POSSIBLE FOR OUR
JOURNEY TO BE EASIER AND OUR
ACHIEVEMENTS POSSIBLE.
MAY THEIR JOURNEY ARE FILLED
WITH LIGHT.
I LEARNED THIS FROM OUR
COMMUNITY LEADER IN PUERTO RICO.
SHE IS A FEARLESS IN OUR
COMMUNITY AND TAUGHT ME A LONG
TIME AGO THAT PUERTO RICO IS IT
AN ARK PEL GA.
WE ARE NOT AN ISLAND.
WE ARE SEVERAL ISLANDS AND ON
EACH ISLAND PEOPLE LIVE AND NEED
AND SUFFER AND CELEBRATE.
SO FROM HERE ON, PUERTO RICO IS
AN ARK PEL GO.
THIS PRESENTATION, I WILL BE
TALKING ABOUT COMMUNITY-ENGAGED
RESEARCH.
THE VALUE OF THE
COMMUNITY-ENGAGED RESEARCH, THE
IMPORTANT ELEMENTS OF THIS
RESEARCH AND SOME EXPERIENCES
FROM THE ARK PEL GO PUERTO RICO.
THIS IS IMPORTANT SO YOU KNOW
WHY MY RELATIONSHIP IS TO THE
COMMUNITIES AND HOW I USE
COMMUNITY ENGAGEMENT RESEARCH.
COMMUNITY IS A GROUP OF PEOPLE
WHO HAVE COMMON INTERESTS.
COMMUNITIES ARE DEFINED BY
GEOGRAPHIC LOCATION, ETHICAL OR
RACIAL GROUP, AGE, OCCUPATION,
SHARED INTERESTS OR AFFINITIES
LIKE RELIGION OR FAITH OR OTHER
COMMON BONDS.
SOMETIMES THE COMMUNITY COMES
TOGETHER BECAUSE OF OPPRESSION.
MANY OF OUR COMMUNITIES COME
TOGETHER BAYS OF OPPRESSION.
WHAT IS COMMUNITY ENGAGEMENT?
IT'S THE PROCESS EVER
MEANINGFULLY INVOLVING
COMMUNITIES AFFECTED BY RESEARCH
AND FINDING IN THE RESEARCH
PROCESS.
THE PROCESS OF WORKING
COLLABORATIVE WITH AND THROUGH
GROUPS OF PEOPLE AFFILIATED BY
GEOGRAPHIC PROXIMITIES, SPECIAL
INTERESTS OR SIMILARIVATIONS TO
ADDRESS ISSUES AFFECTING THE
WELL-BEING OF THOSE PEOPLE.
THIS IS FROM THE CENTER OF
DISEASE CONTROL AND PREVENTION.
ALSO THE GOALS OF COMMUNITY
ENGAGEMENT ARE TO BUILD TRUST
AND LIST NEW RESOURCES AND
ALLIES, CREATE BETTER
COMMUNICATION AND IMPROVE
OVERALL HEALTH OUTCOMES AS
SUCCESSFUL PROJECTS LAST INTO
COLLABORATIONS.
THERE ARE LEVELS TO COMMUNITY
ENGAGEMENT.
THIS IS A PROCESS.
WE CAN BE IN ANY OF THE STEPS.
IT CAN BE AN APPROACH --
CONSULTATION PROCESS.
IT COULD BE WHERE WE ARE
INVOLVING PEOPLE IN THE
COMMUNITY IT'S WHERE WE ARE
COLLABORATING.
AND FINALLY IT COULD BE SHARING
LEADERSHIP OR HAVING COMMUNITY
MEMBERS AS PART OF THE GROUP OF
THE RESEARCH GROUP, AND
LEADERSHIP OF THAT GROUP.
THIS IS A PROCESS.
IT'S ANIT RAT PROCESS SO IT'S
CONSTANTLY BEING REVIEWED.
IT MUST HAVE THE BIDIRECTIONAL
COMMUNICATION.
AND THAT MUST BE OPEN AND
TRANSPARENT.
IT'S IMPORTANT FOR PEOPLE TO
KNOW WHAT TO EXPECT FROM US AND
WE SHOULD KNOW.
WE SHOULD BE CLEAR IN OUR
EXPECTATIONS.
IT MUST BE RELEVANT TO ALL
PARTIES.
FOR COMMUNITIES IF THERE IS NO
RELEVANCY, THERE IS NO TIME FOR
THIS.
IF THERE IS -- THERE MUST BE
CLEAR ROLES, WHATEVER YOU'RE
EXPECTING FOR OUR COMMUNITY
PARTNERS.
WHAT SHOULD THEY BE EXPECTING
FROM US?
IT IT MUST BE COMMUNICATIVE.
WE HAVE TO BE COMMUNICATING ALL
THROUGH THE PROCESS.
BAYS THAT BRINGS THE TRUST THAT
IS SO NEEDED FOR ANY KIND OF
RELATIONSHIP OF THIS SORT.
THE GOAL SHOULD BE TO BRING
JUSTICE INTO THE PROCESS.
THAT IS THE IDEA.
IT SHOULDN'T BE SOMETHING THAT
IS FOR RESEARCHERS AND FOR
LIBRARIES AND FOR PROFESSIONALS
T SHOULD BE SOMETHING THAT IS
FOR ALL TO HELP AND TO DIMINISH
AND ELIMINATE HEALTH
DISPARITIES.
COMMUNITY-ENGAGED RESEARCH
SHOULD BE PRIORITIZED AND VERY
IMPORTANT IN OUR INSTITUTIONS T
SHOULDN'T BE AN AFTERTHOUGHT.
IT SHOULD BE PARTICIPATORY WHERE
THEY HAVE THEIR SAY.
NOT ONLY IN TERMS OF HOW WE
RERIGHT AND HOW WE DO THE
RESEARCH ACTIVITIES BUT ALSO IN
THE QUESTIONS T SHOULD BE
TRANSLATED.
THE MEANING SHOULD BE CLEAR.
THE FINDING SHOULD BE CLEAR.
AND WE SHOULD BE USING REAL-LIFE
SETTINGS.
SO IT MUST BE RELEVANT,
RELATABLE AND VALUABLE.
THESE ARE SOME OF THE STORIES
FROM PORES RICO.
WHAT HAS GONE WELL AND WHAT HAS
BEEN CHALLENGING AND WHAT HAS
BEEN BOTH.
HURRICANE IRMA AND MARIA CAME IN
2017.
THESE ARE IMPORTANT THINGS THAT
HAPPENED TO US.
EARTHQUAKES IN 2019, 2020 AND
2020.
AND COVID PANDEMIC THAT WE ARE
STILL GOING THROUGH.
MOST IMPORTANT THINGS OF ALL IS
THAT COMMUNITY PARTICIPANTS KNOW
WE ARE HERE FOR THE LONG RUN
JUST NOT FOR OUR RESEARCH
PROJECT, NOT JUST TO GET THE
INFORMATION WE NEED AND TO
PUBLISH OUR PAPERS, PRESENT IN
OUR CONFERENCES.
BUT WE ARE THERE FOR THE LONG
RUN.
OOZE THESE AEMERGENCIES
APPROACHED US IN PUERTO RICO, WE
IMMEDIATELY STOPPED RESEARCH
50s STEPPED IN RESPONSE AND
RECOVERY.
WE LEARNED TO BE A RESEARCH
ENTITY THAT WAS MORE THAN THAT.
IT WAS COMMUNITY PARTNER AS WELL
TO OUR COMMUNITY PARTNERS AND TO
OUR PARTICIPANTS AS WELL.
SO WE DID RAPID NEEDS ASSESSMENT
OF COMMUNITY PARTNERSES AND
PARTICIPANTS, WHAT THEY NEEDED.
NOT WHAT EVERYBODY THINKS PEOPLE
NEED IN AN EMERGENCY, WHAT THEY
SPECIFICALLY NEEDED.
WE CATERED TO WOMEN WHO ARE
PREGNANT AND MOTHERS OF YOUNG
CHILDREN.
SO SPECIFIC NEEDS FOR THIS
COMMUNITY.
THE NETWORK TO SUPPORT OF
COLLABORATORS TO PROVIDE
RESOURCES FOR THE RESPONSE.
BECAUSE WE NEEDED THINGS TO BE
ABLE TO SEND TO COMMUNITIES.
WE NEEDED SOME MATERIAL HELP.
WE ADJUSTED INCENTIVESES TO
CONTEXTUAL SITUATION,
TRANSPORTATION WAS OUT AND IT
WAS DIFFICULT.
RECRUITMENT WAS NOT AFFECTED IN
THE LONG RUN.
AND IT REALLY CONTRIBUTED TO THE
TRUST IN THE RELATIONSHIP.
NOW WE HAVE A PROTOCOL.
A WAY TO RESPOND EVERY TIME
THERE IS AN EMERGENCY BECAUSE WE
KNOW THAT THERE WILL BE ANOTHER
ONE.
AND THIS IS AN EXAMPLE OF SOME
OF THE PROTECTIVE MATERIALS THAT
WE WERE ABLE TO OFFER OUR
COMMUNITIES THROUGHOUT THESE
EXPERIENCES, ESPECIALLY DURING
THE COVID AND THE EARTHQUAKES.
AND YOU CAN SEE THERE ARE THINGS
THAT PEOPLE NEED DURING THIS
TIME AND THERE IS COLORING BOOKS
BECAUSE WEICATOR ALSO TO ELDERLY
POPULATIONS AND THEY WERE
SITTING IN THEIR HOMES IN THE
LOCKDOWN, BORED.
AND THIS IS ONE OF THE THINGS
THAT THEY ASKED US TO PROVIDE.
SO WE DID.
AND DELIVERED THEM SAFELY.
SOME OF THE STRATEGIES THAT ARE
REALLY HELPFUL FOR ENGAGE THINK
COMMUNITIES IN OUR EXPERIENCE
ARE COMMUNITY ADVISORY COUNCILS,
RETURN OF RESULTS, NEEDS
ASSESSMENT SURVEYS, ANALYSIS AND
COMMUNITY ENGAGEMENT STUDIOS.
IN OUR PROJECT IN PUERTO RICO
TEAM FOR EXPLORING CONTAMINATION
THREATS, WE STUDIED THE EFFECTS
OF PRETERM BIRTH OF
CONTAMINATION ON PRETERM BIRTH.
WE PROVIDE THE REPORT BACK.
WE DELIVER THE INFORMATION FROM
THE SAMPLES THAT THE
PARTICIPANTS HAVE GIVEN TO US.
SO WE GIVE THEM BACK WHAT THEY
GAVE TO US.
EXPLAINED IN A WAY.
AND WE DID IT THROUGH A
SMARTPHONE APP THAT WAS
DEVELOPED IN A PARTICIPATORY
MANNER WITH OUR PARTICIPANTS.
WE HAD PEOPLE FROM OUR
COLLABORATING CLINICS AND
PARTICIPANTS LOOK INTO THE
PROTOTYPE THAT WAS CREATED BY
THE INSTITUTE, AN ORGANIZATION
IN MASSACHUSETTS THAT HELPS
RESULTS AND DOING SOMETHING
ABOUT THEM.
WE WERE ALSO ABLE TO CATER TO
PARTICIPANTS IN TERMS OF THE
MOST SIMPLE THING AS THE AVATAR.
THEY WANTED TO THE WOMEN TO LOOK
LIKE THEM.
THEY WANTED THEIR PHOTOS IN THAT
REPORT THAT WERE SUGGESTING
THINGS THAT PEOPLE COULD DO TO
PREVENT OR DIMINISH EXPOSURE TO
THINGS THAT WERE COMMON TO THEM.
PHOTOS THAT MEANT SOMETHING THAT
WAS IN THEIR CONTEXT.
SO THIS WAS REALLY SUCCESSFUL.
IT TAKES US TOOLS LEARNING ABOUT
OTHER NEEDS.
THROUGH THE PANDEMIC, POST
PANDEMIC AND POST EARTHQUAKES WE
HAD A LOT OF REQUESTS ON MENTAL
HEALTH SERVICES.
AND WE STILL ARE RECEIVING THEM.
SO WE HAVE DEVELOPED MATERIALS
THAT NOT ONLY TELL YOU WHAT YOU
CAN DO, BUT ALSO WHERE AND WHEN
YOU CAN GET HELP.
THE COMMUNITY ADVISORY COUNCIL.
THIS IS A STRATEGY THAT WE USED
AT THE CENTER FOR COLLABORATIVE
RESEARCH AND HEALTH DISPARITIES
FOR THE PAST FIVE YEARS AND IT
HAS BEEN VERY SUCCESSFUL.
WE HAVE A COLLECTIVE OF
COMMUNITY MEMBERS AND
ORGANIZATIONS AND
REPRESENTATIVES THAT PROVIDE
COMMUNITY INFORMATION, GUIDANCE
AND ASSISTANCE TO THE RESEARCH
PROJECT OR INITIATIVE TEAM.
THEY HELP US WITH OUR
RESEARCHERS DEVELOP WAYS AND
STRATEGIES TO BE ABLE TO PRESENT
TO LAY POPULATIONS, TO BE ABLE
TO BE UNDERSTOOD BY COMMUNITIES
AND ALSO RECEIVE QUESTIONS ON
OUR COMMUNITY ADVISORY COUNCIL
IN TERMS OF HOW THEY CAN DO A
BETTER JOB NOT ONLY PRESENTING
THEIR RESULTS AND WHAT THEY ARE
DOING BUT ALSO DOING RESEARCH
THAT IS MORE AKIN TO THE NEEDS
AND TO THE INTERESTS OF THE
COMMUNITY.
IT ALSO IS A WAY TO PROVIDE.
THEY ALSO HELP US PROVIDE
RELATIONSHIPS WITH OTHER
COMMUNITY MEMBERS AND OTHER
REPRESENTATIVES IN THE
COMMUNITY.
SO IT HAS BEEN A GREAT HELP FOR
US AND OUR RESEARCHERS.
WE NEED TO KEEP IN MIND THAT
THERE MUST BE ACTIVE LISTENING.
WE HAVE TO LISTEN MORE THAN WE
TALK.
THAT WE HAVE TO VALIDATE
EXPERIENCES BECAUSE THEY ARE THE
EXPERTS IN THEIR COMMUNITIES AND
IN THEIR CONTEXT.
THAT OUR PHYSICAL PRESENCE IS
IMPORTANT TO BE THERE.
THAT WE NEED TO IDENTIFY
RESOURCES AS WELL AS NEEDS.
RECOGNIZE THOSE RESOURCES.
ALL COMMUNITIES HAVE RESOURCES.
AND ALSO TO FOLLOW-UP.
WE HAVE TO WALK THE WALK.
WE NEED NEEDS ASSESSMENT SURVEYS
IS ANOTHER WAY OF ASKING
COMMUNICATED I GROUPS WHAT THEY
SEE IS THE MOST IMPORTANT NEEDS
OF THE GROUP OF THE COMMUNITY.
RESULTS OF THE SURVEY GUIDE
FUTURE ACTION.
SO THESE ARE SOME OF THE REASONS
THAT WE DO THIS.
ESPECIALLY TO GET MORE PEOPLE
INVOLVED AND TO LEARN ABOUT THE
NEEDS, TO BE MORE HONEST AND
OBJECTIVE DESCRIPTION OF THE
NEEDS THAT PEOPLE MIGHT TELL YOU
PUBLICLY.
TO DOCUMENT THE NEEDS WHICH CAN
HELP FUNDING AND ADVANCING OR
LOBBYING YOUR CASE.
THE ANALYSIS A STRATEGIC
FRAMEWORK.
IT'S A SIGNIFICANT TOOL FOR
SITUATION ANALYSIS THAT HELPS
IDENTIFY ORGANIZATIONAL
ENVIRONMENTAL FACTORS.
SO IT HELPS ORGANIZATIONS TO
DEFINE STRATEGIES FOR GOALS.
WE USED IT WITH OUR RESEARCHERS
TO GAUGE WHAT IS THEIR INTEREST,
WHERE THEY ARE IN TERMS OF
COMMUNITY ENGAGEMENT AND WHERE
WE NEED TO GO.
AND IT HELPED US IN THE PAST
FIVE YEARS TO DEVELOP A SERIES
OF ACTIVITIES AND OBJECTIVES
TOWARDS THE GOAL OF CREATING
MORE PARTNERSHIPS WITH
COMMUNITIES.
THE INFORMATION THAT THE
ANALYSIS PROVIDED HAS BEEN OF
GREAT HELP IN THIS PROCESS.
THE COMMUNITY STUDIO IS A
METHODOLOGY DEVELOPED BY
VANDERBILT UNIVERSITY.
AND IT PROVIDES A STRUCTURE TO
GAIN VALUABLE COMMUNITY INSIGHT
AT ANY PHASE OF RESEARCH.
MEMBERS OF THE RESEARCH
POPULATION OF INTEREST WHICH IS
IMPORTANT TO HAVE AS A
CONSULTATIVE GROW.
THE COMMUNITIES INCREASES
UNDERSTANDING OF RESEARCH AND
INCLUDING THE MOTIVATION AND THE
RESEARCHERS AND HOW THE RESEARCH
IS CONDUCTED.
AND IT'S ONE THING VERY
IMPORTANT, WE MUST PROVIDE
INCENTIVES FOR THIS.
MANY TIMES MONETARY INCENTIVES.
SO WE CAN SHOW AND DEMONSTRATE
THAT THEIR WORK IS VALUED AND IS
IMPORTANT.
WE ALSO DEVELOP A LIST.
A DEPOSITORY OF COMMUNITY
ENGAGED EXPERTS THAT CAN HELP US
IN FUTURE RESEARCH.
THIS IS A SMALL VIDEO THAT I'D
LIKE TO PRESENT.
>>PROTECT.
PUERTO RICO -- ONE
CONTAMINATION.
GET TO KNOW THE RESULTS.
AS PART OF THE PROJECT WE
PROVIDE YOU WITH A FINAL REPORT
USING DIGITAL PLATFORM.
YOUR REPORT HAS ALL THE
INFORMATION FROM THE ANALYSIS OF
THE TEST AND SAMPLES THAT YOU
PROVIDED DURING YOUR PREGNANCY
AND THE TIME YOU PARTICIPATED IN
OUR PROGRAM.
THE RESULTS COME TOGETHER WITH
THE CHEMICAL CONTAMINANTS IN
YOUR BODY DURING PREGNANCY, THE
DEFINITION AND WHERE YOU CAN
FIND THEM IN YOUR HOME AND IN
YOUR DAILY USE PRODUCTS.
ALSO, YOU WILL FIND
RECOMMENDATIONS TO REDUCE
EXPOSURE TO THE CONTAMINANTS.
IN ADDITION TO THE SHARED
PLATFORM, PROTECT MEMBERS ARE
AVAILABLE TO ANSWER QUESTIONS
AND INFORMATION TO HELP YOU
UNDERSTAND YOUR RESULTS,
INCLUDING EDUCATIONAL MATERIALS
ON USE OF ENVIRONMENTAL
POLLUTION, PREGNANCY AND HEALTH
INFORMATION CONCERNING YOU AND
YOUR BABY.
FOR MORE INFORMATION, WE INVITE
YOU TO GIVE US A CALL AT: THANK
YOU.
THANK YOU VERY MUCH.
THIS IS OUR CONTACT INFORMATION
AND THANK YOU VERY MUCH FOR YOUR
ATTENTION TO.
>>I WANT TO THANK THE
ORGANIZERS OF THIS EVENT TO
ALLOW ME TO SHARE WITH YOU OUR
EXPERIENCES IN VENEZUELA.
I'M A PROFESSOR OF NEUROSCIENCE
AND HUMAN GENETICS AT THE
UNIVERSITY OF TEXAS.
I ALSO WANT TO THANK MY
COLLABORATORS AT COLUMBIA
UNIVERSITY AT THE UNIVERSITY OF
JULIA IN VENEZUELA AND NYU AND
IN PARTICULAR, THE ROLE OF JESUS
WHO IS NOW AT UNIVERSITY.
I ALSO NEED TO ACKNOWLEDGE
FUNDING FROM THE NATIONAL
INSTITUTES OF AGING IN THE U.S.
INCLUDING THE AGING INSTITUTE
AND THE NATIONAL EYE INSTITUTE
AND THE FOGARTY INTERNATIONAL
CENTER AND THE FIRST 10 YEARS OF
THIS STUDY WAS FUNDED BY THE
VENEZUELAN AGENCY.
I NEED TO REPORT A POTENTIAL
CONFLICT WITH A SMALL NONPROFIT
THAT I FOUND.
TODAY, I WILL BE TALKING MORE
COMMUNITY ENGAGEMENT RATHER THAN
TO SPECIFIC SCIENTIFIC ADVANCES
THAT WE HAVE MANAGED TO OBTAIN
IN VENEZUELA.
I WILL BE GIVING YOU A GENERAL
BACKGROUND OF WHAT THE STUDY IS
AND HOW THE HUMANITARIAN CRISIS
IN VENEZUELA AFFECTED OUR WORK,
HOW WE ADAPTED OUR EYE STUDIES.
I WOULD SUMMARIZE COMMUNITY
ENGAGEMENT ACTIVITIES AND SHARE
WITH YOU OUR MOST VALUABLE
LESSONS.
AS A GENERAL BACKGROUND, I WAS
BORN AND FINISHED MY MEDICAL
EDUCATION AT THE UNIVERSITY OF
SOULIA.
LATER I CONTINUED MY STUDIES AT
THE MASS GENERAL HOSPITAL,
DEPARTMENT OF PSYCHIATRY,
REALIZING THAT I REALLY WANTED
TO STUDY NEUROBIOLOGY AND
BEHAVIOR, WHICH I DID THROUGH
PH.D. AND MASTERS AT COLUMBIA
UNIVERSITY.
WHEN I FINISHED, I WENT BACK TO
ESTABLISH THE AGING STUDY.
I HAVE CONTINUED MY
COLLABORATION WITH MY COLLEAGUES
FROM COLUMBIA UNIVERSITY AND I
MOVED TO TEXAS IN 2016 AND I
STILL KEEP THE COLLABORATION AND
THE STUDY GOING.
HERE I WANT TO SHOW YOU THAT
THERE ARE MANY SIMILARITIES
BETWEEN TEXAS AND VENEZUELA.
AND THIS HAS ALLOWED ME TO
IMPLEMENT SOME OF THE LESSONS
FROM THE VENEZUELA IN TEXAS.
WE WANTED TO ESTABLISH THE FIRST
LONGITUDINAL STUDY OF AGING IN
LATIN AMERICA AND WE SELECTED
THIS AREA, IN THE CITY OF
MARQUISO.
AS MANY OF LATIN-AMERICAN
CITIES, YOU WOULD SEE THE
DOWNTOWN AREA, HISTORICAL AREA
IN THE BACKDROP OF MODERN
BUILDINGS.
WE BUILD DOOR-BY-DOOR REGISTRY
OF INDIVIDUALS OLDER THAN 55
YEARS AND OLDER.
INITIALLY, THE FIRST 10 YEARS OF
THE STUDY WERE FOUNDED BY
VENEZUELAN GOVERNMENT.
THROUGH OUR SURVEY GOING
DOOR-BY-DOOR, WE IDENTIFIED 3,65
INDIVIDUALS, 55 YEARS OF AGE --
3,065 INDIVIDUALS.
WE WERE ABLE TO CONTACT 97% OF
THEM.
AND THEN WE DECIDED TO DO A
FAMILY INTERVIEW.
WE INTERVIEWED 94% OF THE
INDIVIDUALS AND THEIR FAMILIES
AND REALLY NOBODY REFUSED TO
GIVE US THE CONSENT TO
PARTICIPATE IN THIS STUDY.
BUT WHEN WE WENT TO PHASE III,
WHICH WE HAD TO DO ALL THE
CLINICAL ASSESSMENTS, 70% OF
THEM AGREED TO PARTICIPATE.
AND WE DID ONE PHASE STUDY
MEANING THAT ALL OF THEM
RECEIVED THE SAME TYPE OF DEEP
PHENOTYPING IN TERMS OF
NEUROPSYCHOLOGY,
NEUROPSYCHIATRIC, CARDIOVASCULAR
AND SOME ALSO ENDOGRAPHIC
STUDIES.
ONE OF THE FAMILIES REPORTED TO
BE FROM SANTA ROSA, A VILLAGE
NEARBY AND IS ONE OF THE TOWN'S
OF WATER AROUND THE LAKE.
AND THEY ARE HOUSES BUILT ON
STILTS.
THESE WERE THE ONES THAT GAVE
VENEZUELA THE ORIGIN AS AMERICA
CAME AND SAW THEM AND REMINDED
HIM OF LITTLE VENICE.
SO VENEZUELA MEANS LITTLE
VENICE.
WE ENGAGED IN DIFFERENT
ACTIVITIES AT THE TIME I
REALIZED I REALLY NEEDED THE
SUPPORT OF OTHER SCIENTISTS AND
REACHED TOUT MY COLLEAGUES, MY
CLASSMATES, MY PROFESSORS AND
THEY CAME.
WE HAD DIFFERENT COMMUNITY
ASSEMBLIES, CLASSES AND OPTED
FOR APPLY TO NIH TO FORWARD
INTERNATIONAL CENTER FOR D43
GRANT THAT WAS IMPLEMENTED AS A
CAPACITY-BUILDING ACTIVITY
THROUGH DIFFERENT SERIES OF
SESSIONS TO IDENTIFY AND TO PUT
TOGETHER A TEAM OF VENEZUELANS
THAT WILL ACTUALLY LEAD THIS
STUDY AND COLLABORATE WITH OUR
COLLEAGUES IN THE UNITED STATES.
THE FIRST PUBLICATION FOR THIS
STUDY HAD TO DO WITH REPORTING
THE CHARACTERISTICS ON NORMATIVE
POPULATIONS THAT HAD TO DO WITH
METRICS, NUTRITION, ELEMENTS,
PREVALENCE AND INCIDENCE.
AND WE BEGAN STUDYING
CARDIOVASCULAR ASPECTS AND ONE
THAT WAS QUICKLY IDENTIFIED WAS
THE NEW MEASURE FOR BLOOD
PRESSURE BY ABILITY.
WHICH HE TIME IT WAS NOT A
SIGNIFICANT FACTOR AND THANKS TO
THIS INDEX AND OTHERS THAT HAVE
COME AFTERWARDS, IT'S NOW A
TARGET OF A LOT OF IMPORTANT
RESEARCH.
THESE STUDIES EMERGE ALSO.
IT WAS VERY CLEAR THAT THERE
WAS -- THIS SET OF DATA,
PARTICULARLY AROUND 24-HOUR
BLOOD PRESSURE MONITORING WAS
VERY VALUABLE.
WE WERE ABLE TO PARTICIPATE IN
SEVERAL CONSORTIA, IN PARTICULAR
THE ONE THAT CONGLOMERATED ALL
THE STUDIES AROUND THE GLOBE TO
STUDY THIS TYPE OF BLOOD
PRESSURE.
24-HOUR BLOOD PRESSURE.
AND THEN WE HAD HUMANITARIAN
CRISIS THAT BEGAN SLOWLY AND AS
ANY CRISIS IN RELATIONSHIP TO
POVERTY, TO VIOLENCE AND TO
POLITICAL ISSUES THAT IMPAIR THE
ABILITY OF A SOCIETY TO COPE
USING ITS OWN RESOURCES.
AN IMPORTANT CONSEQUENCE HAS
BEEN MIGRATION.
A HIGH NUMBER OF VENEZUELANS
HAVE LEFT THE COUNTRY.
AND VENEZUELA IS ONLY SECOND TO
SYRIA IN TERMS OF NUMBERS OF
VENEZUELAN'S DISPLACEMENT.
IF YOU LOOK AT THE FIRST FIVE
COUNTRIES IN THE WORLD FOR -- AS
A MAJOR SOURCE OF MIGRANTS OR
DISPLACED INDIVIDUALS, VENEZUELA
IS THE SECOND IN THE WORLD.
THIS LED US TO, IN EARLY 2015,
SOME OF THE PARTICIPANTS OF OUR
STUDY SUFFERED.
THIS WAS NOT ALONE.
THIS HAPPENED IN THE CITY WHERE
IN ONE WEEK WE WILL HAVE 70
CASES.
THE WORLD WAS EXPERIENCING ZIKA
BUT WE DIDN'T KNOW THIS WAS
ALREADY IN VENEZUELA AND EITHER
THIS SICKNESS OR UV-ITIS WAS
SOMETHING THAT WAS PART OF THE
SYNDROME THAT IS CAUSED BY ZIKA.
THIS SEVERE CONSEQUENCES OF ZIKA
IN ADULTS AND THE EYES OF KIDS,
WE WERE SEEING UNTIL BOTH OF OUR
POPULATIONS AND THAT IS WHY WE
DECIDED TO PARTNER WITH
COLLEAGUES IN OPHTHALMOLOGY IN
COLUMBIA IN NEW YORK HERE TO
STUDY THIS.
AND WE WERE AMONG THE FIRST TO
REPORT THIS TYPE OF CONSEQUENCES
IN RELATIONSHIP TO THE EPIDEMIC
OF ZIKA.
FROM OUR RELATIONSHIP WITH THE
MONTHMOLOGIST DURING THIS
CRISIS, EMERGE ONE OF THE
MEMBERS OF YOUNGER MEMBERS OF
OUR TEAM WHO ENTERED IN THAT
RELATIONSHIP AND DECIDED TO
CONTINUE THE EYE STUDIES JUST
NOT RELATED TO ZIKA BUT ALSO TO
THE NEURODEGENERATION.
AND SEVERAL PAPERS HAVE COME OUT
AND IN FACT, HE FINISHED HIS
THESIS -- DOCTORAL THESIS AT
UNIVERSITY OF LUBE IN IN
BELGIUM.
ONE OF THE MAIN FINDINGS THAT
JESUS ARRIVE WAS THAT
HYPOTENSION DURING THE NIGHT,
NOCTURNAL HYPOTENSION, HAS BEEN
RELATED AS A VERY STRONG RISK
FACTOR FOR GLAUCOMA.
WHAT HE IDENTIFIED WAS NOT ONLY
THAT THE LEVEL WAS IMPORTANT BUT
THE BLOOD PRESSURE VIABILITY
DURING THE NIGHT.
AND JUST THIS YEAR, WE WERE ABLE
TO BRING THIS SUBJECT AGAIN
DURING THE PANDEMIC TO HAVE
THEIR EYES AND BLOOD PRESSURE
EXAMINED.
AND HERE YOU SEE ONE OF OUR
PARTICIPANTS WHERE WE ARE
LOOKING AT THE OPTICAL RESULTS.
WE ENVISION RESEARCH AND SUPPORT
TO GO HAND BY HAND.
ESTABLISH DIFFERENT MECHANISMS
GIVE FEEDBACK TO THE COMMUNITY.
HERE WE SEE EXPERIENCE
NEUROLOGISTS PROVIDING RESULTS
OF THE STUDIES TO A PARTICIPANT
ON HER FAMILY.
WE ALSO ESTABLISHED A MEDICAL
SCHOOL, WHICH IS AN ACTIVITY
PEER-LED IN WHICH OLDER ADULTS
BRING THEIR MEDICATIONS THEY ARE
TAKING AND WE EXPLORE THE
PROBLEMS OF INTERACTIONS AMONG
DRUGS AND SECONDARY EFFECTS AND
ADVERSE EVENTS.
ESTABLISHED A SCHOOL FOR
CAREGIVERS, ALSO PEER-LED.
WE ALWAYS CONSIDERED THE
IMPORTANCE OF COLLECTIVE
ABILITY.
SO WE PLAN DIFFERENT EVENTS FOR
COMMUNITY MOBILIZATION AND
EMERGENCY RESPONSES.
WE GATHER TOGETHER ABOUT 1500
INDIVIDUALS BEFORE OR PRIOR TO
THE PANDEMIC.
WE PARTNERED WITH DIFFERENT
ORGANIZATIONS THAT ALREADY HAVE
THE MISSION OF PROMOTING
HEALTHIER LIFESTYLES.
AND MAKE THEM AWARE OF HOW TO BE
MORE INCLUSIVE, INCLUDING
INDIVIDUALS THAT WERE
COGNITIVELY IMPAIRED BUT ALSO
THAT WERE HARD TO SEE OR BLIND.
SO WHAT ARE THE MAIN LESSONS
THAT I WOULD LIKE TO SHARE?
ONE OF THE THINGS I WOULD LIKE
TO SHARE IS THAT IT'S USUALLY
VERY IMPORTANT TO LOOK AT
CHALLENGES BUT ALSO LOOK AT THE
ROOT CAUSES OF THOSE CHALLENGES.
FOR EXAMPLE, WHAT ARE THE
LOGISTICS BEING EFFECTED FOR THE
STAFF MOBILIZATION AND
EVERYTHING THAT GOES AROUND THE
LOGISTICS?
AND WHAT IS THE ORANGE IN?
WHAT IS THE MECHANISM THAT IS
GIVING THAT IT IS PROVIDING THIS
CHALLENGE.
OF COURSE IT'S NOT ONE THING BUT
IDENTIFYING THE MECHANISMS, FOR
EXAMPLE WHAT IS HAPPENING IN THE
COMMUNITY IN GENERAL, THE
DYNAMICS OF THE COMMUNITY.
AND THIS LED US TO ACTIVITIES TO
COUNTER ACT THOSE CHALLENGES.
SO BY HAVING REFLECTION AMONG
OURSELVES AND THE TEAM, IT WAS
VERY IMPORTANT TO IDENTIFY THIS
MECHANISMS OF -- HERE ARE SOME
OF THE MECHANISMS WE HAVE
IDENTIFIED AND WE PUBLISHED THIS
IN 2021.
AND THE BMC COLLECTION IS
SPONSORED.
THE KEY LESSONS FROM OUR
EXPERIENCE HAS TO DO WITH THE
FACT THAT CULTURAL AGILITY IS
NOT INTUITIVE FOR OUR
INTERNATIONAL COLLABORATORS.
AND IT WAS HARDER TO GET ON BOTH
SIDES THE -- OUR U.S. PARTNERS
HAVING ACQUIRING THE AGILITY AND
ALSO OUR TEAM IN VENEZUELA TO
ACQUIRE THE CULTURAL AGILITY TO
INTERACT WITH OUR PARTNERS IN
THE U.S.
THE CAPACITY BUILDING APPROACH,
I THINK IS THE NECESSARY
APPROACH.
IT'S NOT IMPOSING.
IT'S THE IDEAL CAPACITY AND NOT
THINKING THAT THE RETURN WILL BE
IMMEDIATE.
WE HAVE BEEN DOING THIS FOR MORE
THAN 25 YEARS NOW.
PARTICIPANTS NEED TRANSPARENCY.
THEY WANT TO SEE WHAT IS THE
RESULT OF THEIR PARTICIPATION.
WE ALSO NEED TO THINK ABOUT OUR
OPERATIONS AND TARGETED
OPERATIONS IN THE SENSE OF
FLEXIBILITY AND THE PURPOSE TO
COUNTER ACT.
AND THE INDIVIDUALIZED APPROACH
BECAUSE WE NEED TO BE FLEXIBLE
BUT WE CANNOT FORGET THAT WE
NEED TO BE PERSONAL FOR AND EACH
PARTICIPANT IS SUSPECTING TO BE
CONSIDERED UNIQUE PERSON.
SO, ENGAGEMENT IS A RELATIONAL
PROCESS.
THIS MEANS THAT ENGAGEMENT IS
THE RESULT OF ONGOING
INTERACTIONS.
AND IT'S LIKE A BEACH WHERE YOU
HAVE THE WATER AND YOU HAVE THE
LAND.
AND ENGAGEMENT, IT'S THE RESULT
OF THE INTERACTION OF THE TWO.
THIS IS A PICTURE OF THE TEAM.
MANY OF THEM ARE NOW IN OTHER
COUNTRIES BUT WE KEEP TOGETHER
ONE WAY OR ANOTHER, NOT ONLY TO
ADVANCE KNOWLEDGE IN VENEZUELA
BUT TO SUPPORT THE COMMUNITIES
THAT WE SERVE.
>>GREETINGS EVERYONE AND THANK
YOU TO ALL THE SPEAKERS FOR
THEIR GREAT PRESENTATIONS DURING
THIS SESSION ON BEST PRACTICES,
LESSONS LEARNED, EFFECTIVE
COMMUNITY-ENGAGED RESEARCH.
I'M DR. JOHN JONC A JARRETT JOH.
WE ARE LIVE FOR Q&A.
YOU PRESENTED SEVERAL
COLLABORATIONS THAT DEMONSTRATE
CANCER RESEARCH IN PERU.
WHAT ARE SOME OF THE LESSONS
LEARNED FROM CONDUCTING SUCH
COLLABORATIONS?
>>THANK YOU FOR THE INVITATION
FOR THIS PANEL.
IT'S A GREAT OPPORTUNITY.
I THINK THAT IT IS IMPORTANT
QUESTION BECAUSE PERU HAS A VERY
HIGH RATE OF NATIVE PEOPLE IN
ITS POPULATION AND THE
INDIGENOUS AMERICAN ANCESTRY IS
70-80%.
THE LESSONS WE LEARNED IS THAT
WE HAVE RESEARCH IN CANCER
CENTERS AND EXPERIENCE IN THE
ORIGIN.
THIS HAVE A LOT NUMBER OF
PATIENT.
THIS IS ALSO NATIONAL RESEARCH
PROJECT AND SAMPLES AND THIS
PERMIT TO BE CONNECTED WITH THE
GLOBAL RESEARCH OPPORTUNITIES IN
CANCER AND THE RESEARCH TO BE
INVOLVED IN MOLECULAR RESEARCH
PROJECTS.
FOR THIS PURPOSE, WE LEARNING
HOW TO CONNECT THESE TO ONCOLOGY
TRAINING AND BUILDING CAPACITY
FOR MOLECULAR APPROACH LINKING
THE BIOBANK TO THE NETWORK
UNIVERSITY NETWORK FOR EDUCATION
PLATFORM FOR SAMPLE RESEARCH
MASTER COURSE AND THIS EXPAND
COLLABORATION TO OTHER
INSTITUTIONS INCLUDING THE
PARTICIPATION OF NATIONAL AND
INTERNATIONAL RESEARCHERS AND
STUDENTS.
THIS GIVE US A CHANCE TO HAVE
WORLDWIDE PRESENCE IN ONCOLOGY
RESEARCH
[ INAUDIBLE ]
AND COLLABORATION POSSIBLE FOR
TEACHING BREAST CANCER STUDENTS
AND ACKNOWLEDGMENT --
>>MODERATOR: THANK YOU FOR THAT
RESPONSE.
SO YOUR SECOND QUESTION.
FOR THE PROJECT THAT FOCUSES ON
THE INDIGENOUS POPULATION, COULD
YOU PROVIDE SOME ADDITIONAL
DETAILS ABOUT THE PROCESS FOR
THIS COLLABORATION?
FOR EXAMPLE, HOW DID YOU GAIN
ENTRY OR BUY IN FROM THIS
POPULATION AND HOW WAS TRUST
ESTABLISHED TO CONDUCT SAID
RESEARCH?
>>AS I SAY BEFORE, THE MAIN
INSTITUTE -- WE HAVE 55,000
PATIENT BY YEAR.
HIGH PARTICIPATION COMING FROM
THE -- WE CAN SELECT PATIENT
THAT COME IN FROM THE NATIVE
COMMUNITY AND THIS IS OUR
STRATEGY FOR COMMUNITY
ENGAGEMENT.
WE DISCUSS TO SEE IF IT IS
BENEFICIAL AND FEASIBLE IN THE
ONCOLOGY DEPARTMENT.
IN CASE OF -- WE SET UP THE
PROCESS AND THE DOCTORS -- WE
HAVE TO HAVE CLOSE RELATIONSHIP
WITH THE PATIENT AND THE FAMILY.
IT'S LIKE TA GAIN TRUST WE HAVE
TO CREATE THIS ENVIRONMENT
TOGETHER WITH THE FAMILY AND THE
PATIENT CAREFULLY FOR CONSENT
PROCESS BECAUSE WE HAVE SOME
HEALTH PROFESSIONALS -- SOME
INDIGENOUS POPULATION AND IT IS
POSSIBLE TO ESTABLISH NETWORK
WITH CIVIL SOCIETY AS PATIENT
GROUPS WE TRAIN ABOUT RESEARCH
AND HAVE TO TRANSFER THE
INFORMATION FROM THE PATIENTS.
>>MODERATOR: THANK YOU.
SO MY NEXT QUESTION IS FOR
DR. JOHN PIETTE.
BASED ON YOUR EXPERIENCE, WHAT
ARE THE STRATEGIES THAT SHOULD
BE PROMOTED THROUGH
INTERNATIONAL COLLABORATIONS IN
ORDER TO ADDRESS SOME OF THE
COMMUNITIES MOST PRESSING NEEDS
AND PRIORITIES?
>>JOHN PIETTE: THANK YOU,
DR. JOHNSON FOR THAT QUESTION
AND THANK YOU TO THE INSTITUTE
FOR THIS OPPORTUNITY TO TALK
WITH YOU AND LEARN FROM YOU ALL.
WE ALREADY TALKED THIS MORNING
ABOUT SOME OF THE STRATEGIES
THAT I THINK WILL BE VERY
IMPORTANT IN IMPROVING CARE IN
LATIN-AMERICAN COMING YEARS.
THOSE INCLUDE USING DIGITAL
TOOLS THAT ARE MORE AND MORE
POSSIBLE GIVEN SOME OF THE
INTERNATIONAL PLATFORMS.
WE TALKED ABOUT ARTIFICIAL
INTELLIGENCE.
WE COULD TALK MORE ABOUT THAT.
AND THE PRIORITY OF MENTAL
HEALTH AS A GROWING NEED AMONG
IMMIGRANTS IN THE UNITED STATES
AND AMONG PEOPLE IN THEIR HOME
COUNTRIES IN LATIN AMERICA.
SO, I WON'T GO BACK TO THOSE
POINTS AS MUCH.
I WILL SAY ABOUT MENTAL HEALTH,
THOUGH.
THERE IS KIND OF A NEW ADVANCE
IN COGNITIVE BEHAVIORAL THERAPY
AND THE TREATMENT OF MENTAL
HEALTH WITH COMMUNITY HEALTH
WORKERS AND BRIEF PSYCHOLOGICAL
INTERVENTION.
THAT ADVANCE IS REALLY WHAT IS
CALLED TRANSDIAGNOSTIC CBT
PROGRAMS.
AND THAT IS, INSTEAD OF HAVING A
PROGRAM THAT IS SPECIFICALLY
FOCUSED ON DEPRESSION OR ANXIETY
OR POST-TRAUMATIC STRESS, AS THE
NAME WOULD IMPLY,
TRANSDIAGNOSTIC CBT FOCUSES ON
THE DRIVERS OF THE VARIETY OF
MENTAL HEALTH SYMPTOMS AND HELPS
PEOPLE FUNCTION BETTER AND FEEL
BETTER.
AND WITHOUT GOING INTO DETAIL
ABOUT IT, IT'S REALLY THE
ADVANCE AND IT IS A PROGRAM THAT
HAS SHOWN GREAT PROMISE IN LATIN
AMERICA AND OTHER LOW AND
MIDDLE-INCOME COUNTRIES AROUND
THE WORLD.
THAT IS ONE THING I WOULD
HIGHLIGHT.
THE NEXT I WOULD HIGHLIGHT AS I
MENTIONED AT THE END OF MY TALK
THIS MORNING, IS THAT I HOPE WE
CAN WORK TOGETHER TO IMPROVE THE
QUALITY OF COMMUNICATION BETWEEN
PATIENTS AND HEALTH SYSTEMS OR
MORE GENERALLY THE RELATIONSHIP
THAT PATIENTS HAVE IN HEALTH
SYSTEMS.
IN MANY COMMUNITIES, I'M SURE
SOME OF YOU ARE QUITE AWARE OF
THIS.
HOSPITALS ARE WHERE YOU GO TO
DIE.
OR HEALTH SYSTEMS ARE WHERE YOU
GO WHEN YOU'RE REALLY AT THE END
OF LIFE OR AT THE END OF YOUR
ROPE.
INCLUDING IN OUR OWN SAMPLES, IN
PARTICULAR WHEN WE IDENTIFY
SAMPLES IN CLINICS, THE SAMPLE
MIGHT BE 80% WOMEN, 20% MEN.
MEN AREN'T GOING TO CLINIC IN
PARTICULAR, BUT IN GENERAL GOING
TO HEALTH SYSTEMS IS NOT SEEN AS
SOMETHING THAT IS USEFUL.
PARTLY WE HAVE TO ADMIT IT'S
BECAUSE THE QUALITY OF
COMMUNICATION BETWEEN PROVIDERS
AND PATIENTS ISN'T GOOD.
I'M VERY SYMPATHETIC TO HEALTH
CARE PROVIDERS, PHYSICIANS AND
OTHERS IN THE UNITED STATES AND
LATIN AMERICA.
SPECIFICALLY IN LATIN AMERICA,
THEY ARE HORRIBLY UNDERPAID.
IN MANY CIRCUMSTANCES THEY ARE
RUNNING OFF TO A PRIVATE
PRACTICE IN THE AFTERNOON JUST
TO MAKE ENOUGH MONEY TO SUPPORT
THEIR FAMILY.
BUT, WE HAVE TO ADMIT THAT MANY
PROVIDERS STILL HAVE SORT OF A
TRADITIONAL VIEW, HIERARCHAL
VIEW OF THEIR RELATIONSHIP WITH
PATIENTS.
I LEARNED JUST IN THE LAST YEAR
ABOUT THE TERM, OBSTETRIC
VIOLENCE SUCH A HORRIBLE TERM.
BUT SOME OF YOU IT LOOKS LIKE
DR. VEGA KNOWS ABOUT THAT.
BASICALLY THIS IDEA THAT
PROVIDERS IN GENERAL, IN
OBSTETRIC CASES AND IN OTHERS,
THREATEN PATIENTS, CHASTISE
THEM, CRITICIZE THEM OR ARE
SHORT WITH THEM, DON'T LISTEN TO
THEM.
AND IT IS SOMETHING THAT WE ARE
REALLY WORKING ON IN THE UNITED
STATES.
NEWER PHYSICIANS AND MEDICAL
PROGRAMS REALLY EMPHASIZE BEING
MORE HOLISTIC AND MORE
PATIENT-CENTERED.
OUR OLDER DOCTORS DIDN'T GROW UP
THAT WAY.
CLEARLY.
NOT ALL OF OUR DOCTORS DO IT
WELL.
BUT DEFINITELY I HAVE TO SAY, IN
OUR EXPERIENCE IN LATIN AMERICA,
IT'S SOMETHING WE COULD WORK ON
EVEN MORE.
AND AS THOSE PATIENTS, LET'S
CALL THEM, COME INTO U.S. HEALTH
CARE SYSTEMS, YOU MIGHT ADD ON
TOP OF ALL OF THAT, A LANGUAGE
GAP AND A VERY
RESOURCE-CONSTRAINED HEALTH CARE
SYSTEM, WOW, WORKING ON THE
QUALITY OF COMMUNICATION THAT WE
KNOW IS IMPORTANT TO BUILD A
TRUSTING ALLIANCE AND TO GET
PATIENTS TO COME BACK FOR CARE
IS SOMETHING THAT I HOPE WE CAN
PRIORITIZE.
THE LAST THING I GUESS I WOULD
MENTION THAT SEEMED VERY
PATIENT-CENTERED TO ME AND IT
HASN'T HAPPENED TO BE MENTIONED.
IT WAS MENTIONED BRIEFLY.
IT WAS MENTIONED THAT MANY
IMMIGRANTS TO THE UNITED STATES
REALLY WANT TO WORK.
THAT CERTAINLY IS SOMETHING WE
HEARD.
I SAW A SERIES OF INTERVIEWS
WITH NEW IMMIGRANTS WHO HAD JUST
COME TO THE UNITED STATES AND
THE INTERVIEWER WAS ASKING THEM,
WHAT DO YOU EXPECT YOUR LIFE TO
BE LIKE HERE?
WHAT ARE YOU HOPING TO DO?
AND EVERY SINGLE ONE, YOU KNOW
WHAT THEY SAID?
I JUST WANT TO WORK.
RIGHT?
SO WORK IS VERY IMPORTANT AND A
VALUE FOR OBVIOUS ECONOMIC
REASONS AND FOR CULTURAL REASONS
TOO.
WORK IS A VALUE.
WORK IS A SIGN OF DIGNITY AND A
SIGN OF CENTERS A GOOD LIFE
AROUND BEING A GOOD WORKER.
WHAT DOES THAT MEAN?
THAT MEANS THAT WHEN WE THINK OF
ENGAGING COMMUNITIES AND
PRIORITIES AND HEALTH PROBLEMS,
WE HAVE TO THINK ABOUT THAT AS
THEIR PRIORITY.
IN OTHER WORDS, PATIENTS MIGHT
NOT NECESSARILY BE ALL THAT
EXCITED ABOUT IMPROVING THEIR
HEMOGLOBIN A1C AS A BLOOD LEVEL,
BLOOD VALUE OR IMPROVING A
NUMBER LIKE A HIS STOLLIC BLOOD
PRESSURE NUMBER, GETTING IT FROM
150 DOWN TO 130.
FINE.
THAT IS SOMETHING A DOCTOR MIGHT
WANT TO DO.
BUT I JUST WANT TO WORK.
SO IF WE ARE ABLE TO DEFINE
HEALTH PROBLEMS AND FRAME OUR
WORK IN COMMUNITIES AND HEALTH
SYSTEMS IN RELATION TO THAT AS A
VERY STRONG COMMUNITY VALUE, I
THINK IT WILL BE VALUABLE.
I'LL TELL YOU ONE LAST ANECDOTE.
SOMEONE IN BOLIVIA ONCE TOLD ME
WHERE WE WERE REALLY STARTING TO
FOCUS ON MENTAL HEALTH, I HAD A
GOOD RELATIONSHIP WITH THIS
PERSON AND THEY SAID, YOU KNOW,
JOHN, I HAVE TO CONFESS TO YOU,
THIS THING ABOUT DEPRESSION,
THAT'S A GRINGO PROBLEM.
RIGHT?
IN OTHER WORDS, THAT'S SOMETHING
YOU HAVE THE LUXURY TO FOCUS ON.
WE HAVE TO WORK.
WE DON'T HAVE THE LUXURY OF
BEING DEPRESSED.
WE JUST KEEP BARRELING ON
THROUGH.
SO SHOWING PEOPLE THAT FOCUSING
ON THEIR MENTAL HEALTH OR
PHYSICAL HEALTH REALLY WILL
ALLOW THEM TO FUNCTION BETTER IN
THE WORK WORLD, WHATEVER THAT
MAY BE, AND THEIR FAMILY ROLES
WHICH ARE VERY IMPORTANT TO
THEM.
SO AS IN TERMS OF PRIORITIZING
AND HOW WE THINK ABOUT PROBLEMS,
IT'S A REALLY DIFFERENT WAY OF
THINKING ABOUT HEALTH CARE GOALS
WHERE AGAIN WE MIGHT THINK OF
IMPROVING HEMOGLOBIN A1C OR
DECREASING SMOKING RATES.
BUT THERE ARE WAYS OF THINKING
ABOUT IMPROVING QUALITY OF LIFE
AND WHAT LIFE MEANS MIGHT BE
VERY DIFFERENT.
SO I WOULD SAY CENTER WORK.
>>MODERATOR: THANK YOU,
DR. JOHN PIETTE FOR THAT
ELABORATE ANSWER.
WE REALLY APPRECIATE THAT AND
APPRECIATE YOUR ATTENTION TO
MENTAL HEALTH WHICH HAS BECOME
MORE PROMINENT AND BROUGHT TO
THE FOREFRONT DURING THIS
PANDEMIC.
MY NEXT QUESTION IS FOR
DR. CARMEN VELEZ VEGA.
DURING YOUR PRESENTATION, YOU
MENTIONED THAT COMMUNITY MEMBERS
AREN'T EXPERTS.
THANK YOU FOR MENTIONING THAT.
SO NOW FOR MY QUESTION.
YOU MENTIONED PERFORMING A SWOT
ANALYSIS IN YOUR SETTING.
WHAT ARE SOME KEY AREAS IN WHICH
NEWER MEASUREMENT TOOLS ARE
NEEDED TO ADDRESS GAPS IN
COMMUNITY-ENGAGED RESEARCH?
>>CARMEN VELEZ VEGA: THANK YOU
FOR THIS INTERESTING QUESTION
AND I WANT TO SAY I'M SO HONORED
TO BE WITH THIS GROUP HERE AND
WITH ALL OF THESE PEOPLE THAT
HAVE PRESENTED IN THIS WONDERFUL
CONFERENCE.
WE NEED MORE QUALITATIVE
MEASUREMENT TOOLS TO BETTER
UNDERSTAND WHAT IS NEEDED AND
WHAT CAN BE DONE TO ADDRESS
THESE GAPS IN THE FIELD.
WE NEED TO HAVE INSTRUMENTS THAT
HELP US LISTEN TO VOICE THAT IS
HAVE BEEN SILENCED FOR VERY
LONG.
COMMUNITY ENGAGEMENT AND
RESEARCH SUPPORTS ARE ASKING THE
RIGHT QUESTIONS IN ORDER TO FIND
COLLECTIVE SOLUTIONS AND WAYS TO
REDUCE HEALTH DISPARITIES THAT
INFLUENCE IN A POSITIVE WAY,
SOCIAL DETERMINANTS OF HEALTH.
QUALITATIVE MEASURES CAN OPEN UP
THE COMMUNICATION BETWEEN
COMMUNITIES AND INVESTIGATORS.
AND THESE MEASURES CAN ALSO
SERVE AS A WAY TO EVALUATE THE
PROCESS, REVIEW EXPECTATIONS AND
BRING FORWARD CONCERNS IN ORDER
TO ESTABLISH TRUST.
THIS IS A CONTINUOUS PROCESS.
FOR EXAMPLE WE CAN USE PHOTO
VOICE AS A QUALITATIVE
METHODOLOGIY AND GET PEOPLE
TALKING ABOUT THEIR CONCERNS,
MEANINGS, RESOURCES THAT ARE IN
THE COMMUNITY, NOT ONLY THE
NEGATIVE BUT THE POSITIVE.
AND UNDERSTAND BETTER THEIR
SOCIAL DETERMINANTS OF HEALTH
AND AT THE SAME TIME ENGAGE THEM
IN THE PROCESS.
>>MODERATOR: THANK YOU VERY
MUCH.
I APPRECIATE THAT RESPONSE.
MY NEXT QUESTION IS FOR
DR. MAESTRE.
I LOVED YOUR METAPHOR OF THE
BEACH FOR COMMUNITY ENGAGEMENT.
I THINK THAT CAPTURES THE TRUE
ESSENCE OF THIS COMMUNITY
ENGAGEMENT.
SO THANK YOU FOR THAT.
I MAY USE IT IN THE FUTURE.
SO NOW FOR MY QUESTION.
DURING YOUR PRESENTATION YOU
MENTIONED GETTING TO THE ROOT
CAUSES OF THE CHALLENGES FACED
BY PARTICIPANTS AND THE STUDY.
WERE YOU ABLE TO EXAMINE THE
REASONS FOR THE SIGNIFICANT DROP
OF NUMBERS OF PARTICIPANTS FOR
PHASE III?
AND WHO DECIDED NOT TO GO ON FOR
THE CLINICAL EXAMINATION?
>>I THINK THIS WAS IN ABOUT --
WE DID THIS STUDIES IN 1997.
THAT WAS THE VERY FIRST STUDIES.
AND THE SOCIAL REPRESENTATION OF
DISEASE WAS THE TARGET FOR US TO
UNDERSTAND.
SO THEY CONSENTED TO BE PART OF
THE STUDY.
EVEN THOUGH WE EXPLAINED THE
BEST WAY POSSIBLE THAT WE
THOUGHT IT WAS -- WE WERE DOING
A GOOD JOB.
THEN IT WAS TIME TO GO TO THE
PLACE AND HAVE YOUR BLOOD DRAWN
OR YOU'RE GOING TO HAVE THIS
TEST, THEY DIDN'T.
70% OF THEM AGREED.
WHICH STILL IT IS QUITE
SIGNIFICANT WITH THE LEVEL OF
TECH -- NUMBER OF TESTS AND
TIMES TO BE DEVOTED.
SO MOST OF THE TIME I'M INVITED
TO TALK ABOUT HOW DID YOU GET
THE 70% TO PARTICIPATE?
AND THE MAIN ANSWER FOR THOSE
30% BECAUSE WE WERE ABLE TO
OBTAIN SOME BIOMETRICS AND ALL
OF THEM GAVE US INSIGHTS AND WE
DID COGNITIVE ASSESSMENTS.
SO WE HAD A BASELINE WITH ALL OF
THEM AND THEN 30% DIDN'T
PROCEED.
THIS WAS SOCIAL REPRESENTATION
OF A GUINEA PIG?
AND STILL WE ARE SEEING THESE IN
MANY OF THE ALZHEIMER'S STUDIES
AND THE EYE STUDIES.
WITH THE EYE IT'S EASIER BECAUSE
EVERYBODY WANTS TO HAVE THEIR
EYE TESTED SOME WAY OR ANOTHER.
BUT WITH AGING AND BRAIN AND
GOING INTO A MACHINE SUCH AS
MRI.
SO THEY EXPRESSED TO US THIS
GUINEA PIG.
I DON'T WANT TO BE.
[ SPEAKING SPANISH ]
I DON'T WANT TO BE THAT.
AND THAT'S SOCIAL REPRESENTATION
GAVE US THE IDEA OF ELABORATING
ELEMENTS AND MESSAGES, TRYING TO
MEET THEM WHERE THEY ARE BUT AT
THE POINT THAT WE CLOSE THIS
STUDY, WE DIDN'T HAVE THAT.
WE HAD TO APPLY THAT REACHING
THEM WHERE THEY ARE IN OTHER
STUDIES THAT WE HAVE DONE
AFTERWARDS.
BUT THIS STUDY THAT BEGAN IN
1997 WITH ENDOGRAPHIC
INFORMATION, AT THE TIME WE WERE
NOT AWARE THAT THIS WAS GOING TO
HAPPEN.
SO, ALSO THE IMPORTANT TO
SUPPORT WHAT DR. VEGA MENTIONED,
THE IMPORTANCE OF QUALITATIVE
WORK BEFORE WE ACTUALLY ENTER
THE COMMUNITY, NOT ONLY
AFTERWARDS.
>>MODERATOR: THANK YOU VERY
MUCH.
THAT IS ALSO A THOROUGH
RESPONSE.
MY NEXT QUESTION AND THIS
APPLIES TO EVERYONE.
SO FEEL FREE TO CHIME IN.
HOW CAN RESEARCHERS IDENTIFY
STRONG COMMUNITY PARTNERS FOR
RESEARCH IN THE UNITED STATES
AND IN LATIN AMERICA?
>>I'M GOING JUMP IN.
I THINK WE ALL HAVE TO RECOGNIZE
THAT WE ARE ALL PART OF
COMMUNITIES.
THIS IS NOT SOMETHING ALIEN TO
US.
WE ARE COMMUNITIES.
WE BELONG TO SEVERAL
COMMUNITIES, EACH AND EVERY ONE
OF US.
INK WE NEED TO SORT OF STEP OUT
OF THE ACADEMIA, STEP OUT OF THE
IVORY TOWER AND GO INTO THE
COMMUNITIES.
DO ACTIVITIES WITH OUR STUDENTS.
JOIN CONCERNS THAT COMMUNITIES
HAVE.
AND THERE ARE MANY THINGS GOING
ON, ESPECIALLY IN PUERTO RICO
AFTER THE HURRICANES.
THERE WAS SUCH DEVASTATION HERE.
COMMUNITIES REALLY HAD TO DO FOR
THEMSELVES BECAUSE THE
GOVERNMENT RESPONSE WASN'T WHAT
WAS EXPECTED.
AND BEING PART OF THAT, OF THESE
INITIATIVES, HELPS US LEARN MORE
OF WHAT ARE THE CONCERNS OF THE
COMMUNITIES.
WHAT ARE THE RESOURCES AND
QUESTIONS?
AND THAT HELPS US DEVELOP BETTER
RESEARCH QUESTIONS.
IT HELPS US IDENTIFY PEOPLE THAT
CAN HELP US UNDERSTAND BETTER
WHERE THEY ARE COMING FROM, WHAT
IS EFFECTING THEM.
AND TO FIND SOLUTIONS.
I THINK THAT GETTING OUT OF THE
ACADEMICS, WALKING INTO THE
COMMUNITY, DOING WORK THERE, IS
VERY IMPORTANT.
>>MODERATOR: THANK YOU.
DR. MAESTRE.
>>I WOULD LIKE TO ADD TO THAT
REALLY DEPENDS ON WHAT YOU THINK
ABOUT A PARTNERSHIP.
FOR EXAMPLE, WHILE IN VENEZUELA
DURING ALL THIS TIME, WE HAVE
SEVERAL CHANGES, TREMENDOUS
CHANGE, POLITICAL CHANGE, AND I
HAVE PARTNERS THAT COME TO ME
SAYING, I WANT TO PARTNER THE
MINISTER OF HEALTH.
AND I SAY THAT IS GOOD BUT THEN
YOU HAVE TO GO TO THEM BECAUSE
THE COMMUNITY IS NOT ACCEPTING
US BECAUSE WE COME FROM THE
CURRENT ADMINISTRATION.
SO SETTING YOURSELF WITH THE
MINISTER OF HEALTH WILL GIVE YOU
A LOT OF ACCESS BUT NOT TO THIS
COMMUNITY.
SOMETIMES THEY COME AND SAY, I
NEED TO GET SOME DNA FROM
INDIGENOUS PEOPLE, HOW CAN YOU
GET IT?
I SAY I'M SORRY, THAT'S NOT MY
BUSINESS.
SO HOW DO YOU REALLY CONCEIVE A
PARTNERSHIP?
AND THAT'S SOMETHING THAT I HAD
A QUESTION IN THE CHAT.
HOW DO YOU CONCEIVE?
AND THAT'S THE CULTURAL AGILITY.
NOT ONLY TO BE AWARE, NOT ONLY
TOW RECOGNIZE CULTURE, BUT HOW
TO SOLVE PROBLEMS WITHIN THE
CULTURE.
AND IN THIS TYPE OF
PARTNERSHIPS, YOU REALLY NEED TO
PULT OUT UPFRONT WHAT IS A
PARTNERSHIP?
SO IN VENEZUELA, HOW I PRESENT
TO THE COMMUNITY IS I'M FAMILY.
YOU CAN COUNT ON ME.
DURING THE WORST TIMES, YOU CAN
COUNT.
AND MY TEAM, IF SOMEBODY IN THE
TEAM IS NOT AVAILABLE 24 HOURS,
THAT PERSON IS NOT RIGHT TO WORK
WITH THE COMMUNITY.
BECAUSE IT'S NOT 8-5.
IN THE UNITED STATES IN TEXAS
AND IN NEW YORK WHERE I HAVE
WORKED, THIS CONCEPT COULD BE
VERY STRANGE.
PEOPLE WANT TO HAVE BUSINESS
WITH THE COMMUNITY.
AND PARTNERSHIPS IS NOT A
BUSINESS.
PARTNERSHIP IS REALLY PUTTING
OUT A STRONG LINKS.
IN VENEZUELA THIS MEANS FEELING
LIKE A FAMILY.
>>MODERATOR: ABSOLUTELY.
THANK YOU.
DR. JOHN PIETTE AND THEN WE'LL
GO TO -- THEN I'LL TRANSITION TO
DR. VICTURE.
>>JOHN PIETTE: I'M GOING TO SAY
SOMETHING REALLY PRACTICAL,
MAYBE SLIGHTLY BOLD, NOT TOO
BOLD.
BUT THE PRACTICAL THING IS, IF
WE WANT TO ENGAGE COMMUNITY I
PARTNERS, IN MANY AREAS OF LATIN
AMERICA OR EVEN IN THE U.S.,
AGAIN IT'S LIKE WHAT I SAID
SOMETIME EARLIER.
YOU JUST HAVE TO BE ON THE
GROUND.
YOU HAVE TO GO.
SO FOR EXAMPLE, WE ARE WORKING
VERY CLOSE IN THE CAPITAL OF
HONDURAS WITH A COMMUNITY
PARTNER THAT REPRESENTS PEOPLE
WITH MENTAL HEALTH DISORDERS.
THEY DON'T HAVE A WEBSITE.
THEY ARE STILL TALKING ABOUT
GETTING A FACEBOOK PRESENCE.
HOW WOULD YOU EVEN KNOW THEY
EXIST IF YOU WEREN'T THERE?
I MEAN YOU LITERALLY HAVE TO GO
THERE.
SO THAT'S THE GENERAL THING.
AGAIN, IT'S NOT A BIG SURPRISE.
THE SLIGHTLY BOLD BUT JUST
TRYING TO BE REALLY PRACTICAL,
THE SLIGHTLY BOLD THING IF I MAY
SAY, INSTITUTES LIKE NIMHD MIGHT
HELP BUILDING COMMUNITY
PARTNERSHIP BY MAKING RELATIVELY
SMALL GRANTS THAT WOULD BE FOR
TRAVEL, THAT WOULD BE FOR
AMERICAN TEAMS TO GO THERE AND
FOR THOSE TEAMS TO COME TO THE
U.S.
WE HAVE THOSE AT THE UNIVERSITY
OF MICHIGAN.
WE ARE VERY LUCKY.
WE HAVE TRAVEL FUNDS THAT
SOMEONE LIKE MYSELF CAN ACCESS.
NOT EVERYONE DOES.
AND BUT SOME WAY TO MAKE THAT
PRACTICALLY POSSIBLE WOULD BE
REALLY USEFUL.
AND LIKE I SAID, IT MIGHT BE
JUST 5000 DOLLAR GRANTS OR
$10,000 GRANTS AT MOST THAT
WOULD PROMOTE THE DEVELOPMENT
AND AGAIN, WE HAVE THOSE WITHIN
OUR UNIVERSITY, FOR MAYBE TWO
YEARS, TO DEVELOP A NEW
COLLABORATION.
THAT'S THE GOAL.
WE DON'T KNOW WHERE IT IS GOING
TO GO.
WE DON'T KNOW IF WE ARE GOING TO
HAVE A SUCCESSFUL COLLABORATION
BUT THERE IS NO WAY TO FIND OUT
UNLESS WE START MEETING AND
START TALKING.
SO THAT WOULD BE SOMETHING,
AGAIN, JUST TO BE LIKE AGAIN
SLIGHTLY BOLD BUT TRYING TO BE
VERY PRACTICAL.
SOME GROUPS MIGHT NEED START UP
FUNDING TO MAKE THOSE
COLLABORATIONS HAPPEN BECAUSE
COMMUNITY ORGANIZATIONS IN LATIN
AMERICA, THEY AIN'T NECESSARILY
ON LINE.
THEY ARE NOT NECESSARILY SHOWING
UP AT EVENTS LIKE THIS BECAUSE
THEY ARE NOT NECESSARILY HAVE
ANY WAY THAT THEY WOULD GET ON
THE E-MAIL LIST OR FIND OUT
ABOUT IT IF EVEN IF THEY HAD THE
TECHNOLOG IN INFRASTRUCTURE THAT
LETS THEM GET ON LINE FOR A
MEETING LIKE THIS.
THAT'S MY THOUGHT.
>>MODERATOR: THANK YOU.
A QUESTION IS ABOUT INDIGENOUS
GROUPS.
SO THAT'S WHY I DIRECTED THE
QUESTION TO YOU FIRST.
SO, THE QUESTION IS, HOW ARE THE
SPECIFIC HEALTH ISSUES OF
INDIGENOUS GROUPS ADDRESSED IN
LATIN-AMERICAN SYSTEM CONTEXT
BEST PRACTICES?
>>TATIANA VIDAURRE: YES, I
THINK THAT THIS IMPORTANT TO
PROMOTE RESEARCH FAMILIES, TO
TRANSLATE THIS INFORMATION TO
THE BEST PRACTICE.
PERU IS A COUNTRY THAT IS MIXED
POPULATION.
WE CALL --
[ SPEAKING SPANISH ]
WE CAN FIND HIGH LEVEL OF
ANCESTRY IN THESE POPULATION.
A GOOD WAY TO ESTABLISH THE
CONVERSATION -- FOR THAT WE NEED
RESOURCES.
WE NEED FAMILY.
YOU NEED TECHNOLOGICAL -- I
THINK THAT IN COUNTRIES --
[ INAUDIBLE ]
PERU HAS TO BE INCLUDED IN THE
BUDGET FOR THIS INITIATIVE TO
GET CONNECTED WITH THE GLOBAL
PLATFORM.
THESE FACILITIES TO PROMOTE
ONCOLOGY RESEARCH, INNOVATION,
AND WE CAN STANDARDIZE THE BEST
PRACTICE, NOT ONLY IN THE
GENERAL POPULATION, WE CAN
STANDARDIZE IN THE GENERAL AND
GENETIC APPROACH AND WE CAN
IMPROVE THE DISPARITY,ETH
NECESSITY IN CANCERS THAT
PRESENT DIFFERENT IN OUR
COUNTRIES.
>>MODERATOR: THANK YOU.
I APPRECIATE THAT RESPONSE.
I THINK I'LL MOVE TO THE NEXT
QUESTION.
BEFORE RERUN OUT OF TIME.
IN REGARDS TO GENOMIC DATA, WHAT
CHALLENGES DO YOU SEE IN YOUR
RESPECTIVE COMMUNITIES?
WHO OWNS THE DATA AND ARE THE
PROTECTIONS SUCH AS GENETIC
INFORMATION AND DISCRIMINATION
ACT IN THE U.S.?
ANYONE WANT TO TAKE A STAB AT
THAT?
>>WE HAD THIS EXPERIENCE
OBTAINING -- ASKING THE
PARTICIPANTS, ASKING THE
COMMUNITY.
AND WE HAVE TO DO A LOT OF
COMMUNITY EDUCATION.
SO I HAD TO BRING THE EXPERTS,
REAL GENOMIC PEOPLE,
GENETICISTS, TO EXPLAIN WHY THEY
ARE NOST GOING TO CLONE
SOMEBODY.
WHY IT'S NOT JURASSIC PARK THEY
ARE TRYING TO DO.
WHY THIS IS NOT GOING TO HELP A
PREGNANT PERSON THAT WAS TOLD
YESTERDAY THAT SHE HAD A
MALFORMATION OR CONGENITAL.
SO WE HAVE TO DO LIKE TWO YEARS
OF COMMUNITY READINESS
ACTIVITIES TO INCREASE THEIR
READINESS OF THE COMMUNITY AND
THE PARTICIPANTS.
AND GIVEN THE WAY OUT IF THEY
DON'T WANT IT -- IF THEY DIDN'T
WANT -- IN TERMS OF THE
PROTECTIONS, IN VENEZUELA, IT IS
PROTECTED IN DIFFERENT WAYS BUT
WE ALWAYS HAVE TOLD THE
COMMUNITY AND COMPLIED WITH THE
COUNTRIES BY PROTECTING A
PERSONAL HEALTH INFORMATION,
KEEPING THE STANDARDS THAT ALL
DATA WILL BE DENON MYSELFED.
WE HAVE TO EXPLAIN TO THEM --
DEANONMIZED.
WE HAVE TO EXPLAIN TO CHEM
WHAT -- HOW RESEARCHERS ARE
GOING TO HAVE ACCESS TO THEIR
DATA.
AND I SHOW THEM, THIS IS THEIR
DATA.
THE DATA IS IN A CD OR DVD OR
USB.
THERE IS NOTHING REALLY.
IT'S A BUNCH OF LETTERS THAT IT
DOESN'T -- THEY DON'T HAVE THE
ABILITY TO PREDICT IF YOU'RE
GOING TO GET CANCER.
SO IT'S THE READINESS.
I KNOW THAT THERE ARE OTHER
COUNTRIES EVEN COSTA RICA AND
BRAZIL THAT ARE VERY STRICT IN
RELATIONSHIP TO DNA OUT OF THEIR
COUNTRIES.
BUT IN VENEZUELA, WE TRY TO
PARTNER AND WE ALSO HAVE TO DO
READINESS TRAINING WITH LOCAL
OFFICIALS.
WE HAVE TO EXPLAIN WHY BECAUSE
THE POPULATION IN VENEZUELA,
IT'S ONE OF THE FEW POPULATIONS
IN THE WORLD THAT ACTUALLY
RECEIVE AN APOLOGIES FROM THE
U.S. BECAUSE OF THE -- SO, WE
HAVE TO EXPLAIN WHAT THE
DIFFERENCE WAS.
WHAT HAPPENED IN THE 60s IS
VERY DIFFERENT THAN WHAT IS
HAPPENING NOWADAYS AND HOW THE
LEGAL STANDARDS AND POLITICAL
STANDARDS HAVE CHANGED INVOLVING
SCIENCE.
>>MODERATOR: ABSOLUTELY.
DID YOU WANT TO ADD ANYTHING TO
IT?
>>IT IS IMPORTANT -- TO
BUILDING A STRONG COMMUNITY,
INTERNATIONAL COMMUNITY FOR
RESEARCH, I THINK THAT WE HAVE
TO PROMOTE THE INTERNATIONAL
PROFESSORS, STUDENTS, TO
COLLABORATE TO STANDARDIZE TO
POLICY TOO FOR THE -- HOW TO
MOVE THE SAMPLES.
AND TRAINING AND RESEARCH IS
IMPORTANT COMPONENT OF THESE
PROCESS.
IF YOU HAVE BETTER HEALTH
PROFESSIONAL THAT IS QUALIFIED
AS SCIENTIST, WE WILL UNDERSTAND
BETTER THE PROCESS.
AND WE HAVE A BETTER
RELATIONSHIP TO GET THAT
INFORMATION.
AND I THINK THAT IN PERU, WE
HAVE A NEW LAW, A LAW THAT
CREATING NETWORK IN THE
INSTITUTE OF TUMOR BANK TO
PROMOTE THIS KIND OF RESEARCH.
AND THIS IS OUR OPPORTUNITY TO
COLLATE SAMPLE OF DIFFERENT
TUMORS AND ESPECIALLY THE NATIVE
COMMUNITIES THAT EXIST AND I
THINK THERE IS A WAY TO BUILD
THIS INFORMATION AND
INTERNATIONALLY.
>>MODERATOR: THANK YOU VERY
MUCH.
DR. CARMEN VELEZ VEGA?
>>CARMEN VELEZ VEGA: YES, WE
ACTUALLY IN THE BEGINNING OF OUR
PROTECT PROJECT 10 YEARS AGO, WE
STARTED TO ASK FOR SAMPLES FOR
GENOMEIFICATION.
OUR PARTICIPANTS HAVE TO SAY YES
TO MANY THINGS AND THEY WOULD
SAY YES TO ALL OF IT EXCEPT FOR
THAT.
20% OF OUR PARTICIPANTS WOULD
NOT WANT TO DO THE GENOTYPIC OR
GIVE SAMPLES FOR THAT.
AND AGAIN, I AGREE WITH YOU
SAYING IT WAS A MATTER OF
EDUCATION.
WE WENT BACK TO THE PARTICIPANTS
AND DID A QUALITATIVE STUDY AND
FOCUS GROUPS AND INTERVIEWS AND
STARTED TO FIND OUT WHY.
WHAT WERE THE CONCERNS.
AND AS SHE SAID, PEOPLE ARE
AFRAID OF BEING CLONED.
PEOPLE ARE AFRAID OF SO MANY
THINGS THAT ARE REALLY
DISINFORMATION, MISINFORMATION.
SO IT TOOK US A WHILE TO GET
BACK AND WE WENT BACK TO THE
CONSENT FORM AND WE CREATED A
CONSENT FORM THAT WAS
UNDERSTANDABLE AND WE REALLY
VERIFIED THAT PEOPLE KNEW WHAT
WE WERE PLANNING TO DO WITH
THIS.
AND THAT IT WOULD NOT BE USED IN
FURTHER STUDIES IF WE DID NOT
CONTACT THEM BEFORE THAT AND GET
THEIR PERMISSION.
SO THINGS LIKE THAT HELPED US.
AND ACTUALLY IT IMPROVED A
GREATLY.
>>MODERATOR: THANK YOU.
DR. JOHN PIETTE LAST WORD ON
THIS QUESTION.
>>JOHN PIETTE: I THINK IT'S
WORTH NOTING THAT INDIVIDUALS IN
WHATEVER COMMUNITY MIGHT HAVE
CONCERNS ABOUT BEING CLONED OR
ABOUT JURASSIC PARK.
THAT IS DEFINITELY SOMETHING
THAT SOUNDS FAMILIAR.
BUT THEY ALSO MIGHT, ANOTHER
LAYER OF THAT IS WHO IS ASKING
FOR THE DATA?
AND I'LL GIVE YOU ANOTHER BRIEF
STORY.
THE PROJECT I MENTIONED IN
BOLIVIA WHERE WE WERE DOING OR
DEVELOPING A SELF-MANAGEMENT
SUPPORT PROGRAM FOR OBLIVION
PEOPLE THAT HAD LIMITED ACCESS
TO CARE.
WE WENT TO THE IRB OF A MAJOR
UNIVERSITY AND THE IRB CAME BACK
WITH A QUESTION, WHY AREN'T YOU
TESTING THIS OUT ON YOUR OWN
POPULATION?
IN OTHER WORDS THERE WAS THE
INSINUATION THAT WE WERE USING
THEM AS GUINEA PIGS TO TEST
SOMETHING FOR OUR BENEFIT
BECAUSE OF THE LONG HISTORY OF
EXPLOITATION THAT THAT
PARTICULAR COUNTRY FEELS ABOUT
THEIR RELATIONSHIP WITH THE
UNITED STATES.
SO ONE THING THAT I GOT TO SAY,
I WAS MORE NAIVE ABOUT 10-15
YEARS AGO, IS THAT I CAN,
SPEAKING FOR MYSELF, I CAN COME
WITH THE BEST OF INTENTIONS AND
THE BEST DESIGNED PROJECT BUT AT
THE END OF THE DAY, THEY ARE
SEEING ME AS AN AMERICAN AND IF
I HAVE MONEY FROM THE UNITED
STATES GOVERNMENT, BASED ON
THINGS THAT ARE HISTORICALLY
TRUE OR HISTORICALLY SOMEWHAT
DISTORTED, THEY ARE SEEING ME
THROUGH THAT LENSE.
AND WE HAVE TO RECOGNIZE THAT
THESE INTERNATIONAL
COLLABORATIONS ARE GOING TO
NECESSARILY DECONTEXTURALIZE
THAT WAY.
THAT MIGHT MEAN THAT SOME
RELATIONSHIPS ARE HARDER.
IN MY EXPERIENCE THERE ARE
CERTAIN COUNTRIES THAT ARE
HARDER TO WORK IN, SAY
NICARAGUA, CUBA AND BOLIVIA IS
VERY DIFFICULT.
SOME COUNTRIES MIGHT BE EASIER.
IT DOESN'T MEAN WE SHOULDN'T DO
IT.
BUT RECOGNIZING THAT KIND OF --
THAT GREATER POLITICAL CONTEXT
AND THE HISTORY BETWEEN OUR
COUNTRIES MAY EFFECT HOW WE ARE
ABLE TO DEVELOP THESE
RELATIONSHIPS WITH COMMUNITIES.
>>MODERATOR: THANK YOU.
DID YOU HAVE SOMETHING ELSE TO
ADD?
I'M JUST --
>>I THINK IT'S VERY IMPORTANT.
I THINK THAT ALSO WE NEED TO
UNDERSTAND THAT EVERY COUNTRY IN
LATIN AMERICA IS VERY DIFFERENT
AND THERE ARE DIFFERENT
RELATIONS ALSO DEPENDING ON THE
DISEASE THAT YOU ARE ADDRESSING
OR THE CONDITION.
THAT THERE ARE -- AS ANYWHERE
ELSE, MORE VULNERABLE
POPULATIONS.
AND WE NEED TO UNDERSTAND THE
DIVERSITY WITHIN THE COUNTRY
THAT WE ARE STUDYING.
PERHAPS PEOPLE THAT ARE KNOWN TO
BE GENETICALLY AT RISK, FOR
EXAMPLE, THERE IS A POPULATION
AT THE HIGH RISK FOR HUNTINGTON
DISEASE BECAUSE IT'S THE LARGEST
CONGLOMERATE IN THE WORLD FOR
HUNTINGTON DISEASE WHICH IS
TRANSMUTED DOMINANTLY.
SO WE HAVE EXPERIENCED, FOR
EXAMPLE, THE VERY WELL
INTENTIONED SCIENTISTS WILL COME
AND THEY WILL BE HOUSES, REAL
HOUSES.
I MEAN NOT ON STILTS, IN THE
GROUND AND HAVE BATHROOMS, WHERE
WE DO ALL OF THAT.
AND THEN WHEN VENEZUELANS GO TO
DO SOMETHING, PEOPLE ARE
EXPECTING TO HAVE A HOUSE FOR IN
EXCHANGE FOR THE BLOT.
WE REALLY NEED TO -- AND THAT'S
WHY I MENTIONED CULTURAL
AGILITY.
ON BOTH SIDES THERE NEEDS TO BE
AN AWARENESS THAT WE ARE
ENTERING IN A RELATIONSHIP IN
WHICH WE NEED TO KNOW MORE ABOUT
THE SUBJECT.
AND THE SUBJECTS HERE ARE BOTH
SIDES OF THE COLLABORATION.
>>MODERATOR: ABSOLUTELY.
THANK YOU ALL FOR YOUR INPUT ON
THAT QUESTION.
WE ARE JUST UP ON TIME BUT THIS
WILL GIVE US A CLOSING QUESTION.
YOU HAVE ALL HINTED ESTIMATE
POINT IN YOUR ANSWERS ABOUT
MISINFORMATION.
AND DURING THIS PANDEMIC WE SEEN
THIS HAS COME TO THE FOREFRONT.
SO, HOW HAS MISINFORMATION AND
MISTRUST IN SCIENCE THAT HAVE
SURFACED DURING COVID-19
PANDEMIC AFFECTED COMMUNITY
ENGAGED RESEARCH?
>>FOR US, REALLY HAD BEEN -- I
HAVE TO SAY THAT THE FEAR OF
PEOPLE IN VENEZUELA HAD LED THEM
TO BE REALLY SELF CONTAINED,
EVEN MUCH MORE THAN THE U.S., I
HAVE TO SAY.
BUT THIS MEANS, THIS HAS MEANT
THAT THEY HAVE LESS ACCESS TO
SERVICES.
SO WHEN WE WENT THIS YEAR TO SAY
HEY, WE NEED TO DO THE FOLLOW-UP
ON THE EYES.
THEY WANTED TO BE PART.
THEY WANTED TO COME AND THEY
SAID, CAN YOU DO MORE TESTS?
CAN YOU DO A BLOOD TEST?
CAN YOU DO OTHERS?
CHECK FOR BREAST CANCER OR
PROSTATE OR WHATEVER?
SO THEY WANTED TO USE THEIR
ABILITIES AND CAPACITIES OF OUR
TEAM BECAUSE THEY HAD LESS
ACCESS TO HEALTH CARE.
>>MODERATOR: DR. CARMEN VELEZ
VEGA AND THEN DR. JOHN PIETTE.
>>YES, WE, IN OUR EXPERIENCE,
SOMETHING THAT HELPED A LOT WAS
THE TRUST THAT WE ALREADY WERE
ABLE TO HAVE WITH OUR
PARTICIPANTS IN OUR COMMUNITY
PARTNERS.
AFTER THE HURRICANES, AFTER THE
EARTHQUAKES, AS WELL AS COVID.
WE IMMEDIATELY CONTACTED THEM
AND STARTED TO GAUGE WHAT ARE
THE NEEDS THAT THEY HAD IN TERMS
OF INFORMATION, WHAT WERE THEIR
QUESTIONS?
AND QUESTIONS THAT, CAN I
BREASTFEED MY KID?
WILL I BE TRANSMITTED -- DO I
HAVE TO WEAR A MASK?
SO WE START -- WE HAD OUR TEAM
DEVELOP MATERIALS, FOLLOW-UP
WITH THESE QUESTIONS AND ANSWER
THEM AND ALSO WITH OUR
COLLABORATION AND COMMUNITY
HEALTH CENTERS FROM WHERE WE
RECRUIT THESE PARTICIPANTS,
THESE FQHCs THAT DID A
WONDERFUL WORK IN TERMS OF BEING
ABLE TO PROVIDE THE TESTING, THE
VACCINES AND COMMUNITY OUTREACH
TO GO HOME BY HOME AND EXPLAIN
TO PEOPLE WHY THIS IS IMPORTANT
AND HOW THEY CAN REACH -- ABLE
TO GET THESE RESOURCES.
ALSO BE ABLE TO PROVIDE ACCESS
TO MENTAL HEALTH SUPPORT, WHICH
WAS A BIG THING DURING -- AND
STILL IS DURING THE PANDEMIC,
THAT ISOLATION, LACK OF FEELING
PART OF THE COMMUNITY.
SO THAT IS FOR US IMPORTANT.
HAVING THAT TRUST AND BEING ABLE
TO BE THERE AT THESE TIMES IS
SOMETHING THAT HAS HELPED US
BUILD ON IT.
>>JOHN PIETTE.
I WOULD SAY IT IS JUST LIKE IN
THE UNITED STATES PEOPLE'S
PERCEPTION OF COVID AND COVID
RISK IS A MIX OF SOME REAL HARD
FACTS THAT THEY ARE DEALING WITH
AND ALSO SOME MISPERCEPTIONS
ABOUT WHAT MIGHT INCREASE RISK.
WHAT IS DIFFERENT IN LATIN
AMERICA OR MANY PLACES, UNDER
SERVED POPULATIONS IN GENERAL,
IS THAT OFTEN IN THE U.S. AT
LEAST FOR LET'S SAY PEOPLE THAT
HAVE ACCESS TO HEALTH CARE,
WE'RE KIND OF CALCULATING OUR
RISK BASED ON OUR
CHARACTERISTICS, NOT REALLY
THINKING ABOUT THE
CHARACTERISTICS OF OUR HEALTH
SYSTEM.
SO IF YOU HAVE -- IF YOU REAL
DON'T TRUST YOUR HEALTH CARE
SYSTEM, YOU'RE GOING TO BE THAT
MUCH MORE CAREFUL BECAUSE YOU
THINK IF I GET SICK, I'M TOAST.
I'M NOT GOING TO GET MEDICATION.
I'M NOT GOING TO BE ABLE TO GO
TO THE DOCTOR.
THAT HIGHTENS PEOPLE'S RISK.
I HAVE A COLLEAGUE WHEN I WAS IN
HONDURAS ABOUT A YEAR AGO THAT
WENT AROUND WITH ME.
NOT ONLY DID HE WANT ME TO WEAR
A MASK WHICH WAS FINE BUT WHEN I
GOT INTO HIS CAR, HE WOULD WANT
ME TO -- BEFORE I GOT IN, THROW
AWAY THE MASK I WAS WEARING AND
HE WOULD HAND ME A NEW MASK.
SO I WOULD KIND OF HAVE A NEW
FRESH MASK.
SO IT GIVES YOU A SONS THAT SOME
PEOPLE ARE EXTREMELY STILL
CONCERNED ABOUT THAT.
SO YOU CAN ALWAYS THINK OF A
NUMBER OF WAYS THAT MIGHT EFFECT
PEOPLE'S ENGAGEMENT WITH HEALTH
CARE SYSTEMS AND NEW PROJECTS.
>>MODERATOR: DR. TATIANA
VIDAURRE LAST WORD ON THIS
QUESTION AND WE'LL WRAP UP.
>>TATIANA VIDAURRE: I THINK THE
PANDEMIC MISINFORMATION ABOUT
THIS INTERVENTION, COVID-19
PANDEMIC, I THINK NOT ONLY
SERVED AS -- ONCOLOGY SERVICES
IN PERU IN OUR COUNTRY WE THIS
THAT EXCESSIVE MORTALITY IN THE
FIRST OF PANDEMIC.
IN PERU THE HIGH MORTALITY IT
WAS BY CLOSING THE ONCOLOGY
CLOSED AND SECOND LEVEL.
WE HAD ONLY OPENED EMERGENCY
ROOM.
THAT IS WHY IN THE INSTITUTE, WE
SAY -- ONCOLOGY PATIENTS.
AT THE INSTITUTE WE KEEP THE
RESEARCH CONTINUING BUT IN THE
REST OF THE COUNTRY WAS SO HARD.
I THINK THAT IS IMPORTANT TO
ADDRESS FOR ANOTHER TIME THAT WE
KEEP IN DIFFICULT SITUATION
BECAUSE CANCER RESEARCH KEEP
GOING BECAUSE WE HAVE TO PROCESS
THE COMPLIANCE AND THAT IS
IMPORTANT TO FOLLOW-UP WITH THE
TRAINING PEOPLE BECAUSE WE CAN'T
GIVE ANOTHER OPPORTUNITIES
INCLUSIVE IN THESE DIFFICULT
MOMENTS.
>>MODERATOR: THANK YOU VERY
MUCH.
AND WE ARE AT TIME.
THANK YOU AGAIN TO YOU ALL.
FOR THIS INTRIGUING
THOUGHT-PROVOKING DISCUSSION AND
THE AUDIENCE FOR YOUR QUESTIONS.
NEXT IS OUR LUNCH BREAK.
PLEASE RETURN AT OR BEFORE
1:05 P.M. EASTERN STANDARD TIME
FOR THE NEXT PORTION OF THIS
UNIQUE WORKSHOP.
OUR NEXT SESSION IS ON PUBLIC
POLICIES AND WILL BE MODERATED
BY DR.-- SEE YOU THEN.
>>WELCOME BACK, OUR NEXT
SECTION IS PUBLIC POLICIES
MODERATEDDED BY DR. CAROLINA
SANABRIA.
>>HELLO, I'M A PROGRAM OFFICIAL
HERE AT NIMHD AND TODAY I HAVE
THE PLEASURE OF BEING YOUR
MODERATOR FOR THE SESSION ON
PUBLIC POLICIES.
WE HAVE THREE PRESENTATIONS, DR.
CHRISTINA PETTIAN-BREWER FROM
UNIVERSITY OF WASHINGTON, DR.
CLAUDIA BAMBS FROM CHILE, AND
DR. MERIKE BLOFIELD FROM GERMAN
INSTITUTE FOR GLOBAL AND AREA
STUDIES, FOLLOWED BY A TIME FOR
Q&A, AND WITHOUT FURTHER ADO LET
US GET STARTED.
>>HELLO, EVERYBODY.
IT'S A GREAT PLEASURE TO BE HERE
WITH ALL OF YOU TODAY TO SHARE
OUR EXPERIENCES FOR A HEALTHIER
PLANET AND WORLD FOR ALL.
I'M FREIGHTFUL TO BE HERE WITH
YOU FOR THIS WORKSHOP AS WELL AS
THANK YOU TO THE ORGANIZERS FOR
THE WORKSHOP.
I'M A VETERINARIAN, WHAT IS
VETERINARIAN DOING HERE TODAY?
AGAIN, IT IS JUST TO SHARE OR
EXPERIENCE AS VETERINARIANS AND
OTHER HEALTH PROFESSIONALS HOW
WE CAN WORK TOGETHER FOR A
HEALTHIER PLANET, AND HUMAN
HEALTH AS WELL.
PARTICULARLY, FOR CONTROL AND
PREVENTION OF THE NEXT
PANDEMICS.
I'M GRADUATED FROM BRAZIL, AND I
HAVE BEEN HERE FOR 32 YEARS IN
THE UNITED STATES WORKING WITH
INTERNATIONAL WORK IN LATIN
AMERICA.
MY EXPERIENCE ALSO I HAVE BEEN
TRAINED AT U.C. DAVIS AND CDC,
AND MADISON, NOW TODAY AN
ASSOCIATE PROFESSOR, SENIOR
RESEARCHER, WORKING AT THE
SCHOOL OF MEDICINE HERE AT THE
UNIVERSITY OF WASHINGTON IN
SEATTLE.
MY EXPERIENCE WITH HUMAN
MEDICINE SINCE I WAS A
VETERINARY STUDENT FOR OUTREACH
PROGRAMS IN RURAL COMMUNITIES,
IN BRAZIL.
I WILL SHARE TODAY THE HISTORY
AND NEW PARADIGM FOR ONE HEALTH,
AND IT IS THE ONE HEALTH
CONCEPT.
THE ONE HEALTH CONCEPT IS NOT
NEW.
AND AS A MATTER OF FACT IT CAME
FROM AIRS, WATER AND PLACES, A
BOOK BY HIPPOCRATES.
ALSO THE IMPORTANCE OF THE
CONNECTION OF ONE HEALTH WITH
INDIGENOUS COMMUNITIES AND
TRADITIONS IN CULTURE, SINCE THE
ANCIENT CIVILIZATIONS TO
NOWADAYS, WE DO HAVE TO LEARN A
LOT, ESPECIALLY THE ONE HEALTH
CONCEPT THROUGH INDIGENOUS
POPULATIONS.
I MENTIONED THE BOOK, I ALREADY
MENTIONED THE IMPORTANCE OF THE
ENVIRONMENT TO THE HUMAN HEALTH.
ARISTOTLE AND THE ITALIAN
BROUGHT IMPORTANCE OF THE
ENVIRONMENT, HOW IT WAS
IMPORTANT OVER THE DEVELOPMENT
OF DISEASES.
IN THE 19th CENTURY, TWO
PHYSICIANS INCLUDING THE
CANADIAN WILLIAM OSLER SHARED
ASPECTS OF ONE HEALTH.
IN 20th CENTURY, AN 'EM
DEEMOLOGYIST FROM UC-DAVIS
BROUGHT BACK THIS ONE HEALTH,
ONE MEDICINE, THE TERM ONE
HEALTH WAS COINED BETWEEN
2004-2007, A GLOBAL EFFORT FROM
OTHER COUNTRIES WORKING TOGETHER
FOR THIS CONCEPT AND
IMPLEMENTATION.
IN LATIN AMERICA, IT'S IMPORTANT
THAT ALSO AGRICULTURE, ANCIENT
CIVILIZATIONS AND INDIGENOUS HAS
BEEN PART OF THE HISTORY OF ONE
HEALTH IN THE WORLD AS WELL.
THE DEFINITION IS THE
COLLABORATIVE EFFORT OF MULTIPLE
DISCIPLINES WORKING LOCALLY,
NATIONAL, GLOBALLY, TO ATTAIN
OPTIMAL HEALTH FOR HUMANS,
ANIMALS, AND OUR ENVIRONMENT,
2008, JUST NOW THIS YEAR PLANTS
HAVE BEEN ADDED AS THE FOURTH
PILLAR OF THE ONE HEALTH
CONCEPT.
THERE ARE A LOT OF ORGANIZATIONS
AND COMMISSIONS OPEN FOR US TO
JOIN TOGETHER, INCLUDING
EMBASSIES AND GOVERNMENT
ASSOCIATIONS.
THIS WEEK WE'RE CELEBRATING THE
ONE HEALTH DAY ON NOVEMBER 3.
THIS WAS VERY IMPORTANT TO
DESCRIBE THE ONE HEALTH CONCEPT,
YOU CAN SEE HOW THE DISCIPLINE
IS INTRINSICALLY INTERCONNECTED,
BUT MOST IMPORTANT COMING FROM
THE EGO TO ECO PERSPECTIVE TO
WORK DIRECTLY WITH COMMUNITIES
BY ONE HEALTH APPROACHES.
YOU WILL HEAR DIFFERENT TERMS AS
ONE HEALTH, ECO-HEALTH,
PLANETARY HEALTH, ONE WELFARE,
DEPENDS WHICH VISION, WHICH
APPROACH YOU'RE COMING FROM, BUT
BASICALLY THE INTENTION IS THE
SAME.
SOMETIMES I EVEN JOKE SO WE
DON'T SEPARATE OURSELVES AGAIN,
WHY NOT CREATE AN INTERGALACTIC
ONE HEALTH SINCE NOW WE'RE IN
SPACE.
THERE ARE DIFFERENT APPROACHES
AS EXAMPLES, WE DO HAVE TO KNOW
WHAT IS AND WHAT IS NOT ONE
HEALTH.
KNOW AND UNDERSTAND THE CONCEPT.
IN ONE OF THEM IT IS PUBLIC
HEALTH POLICY AND REGULATION AS
WE'RE GOING TO DISCUSS TODAY.
THIS ARTICLE IS VERY GOOD TO
EXPLAIN IN LATIN AMERICA ONE
HEALTH CAME MORE FROM GRASS
ROOTS MOVEMENTS FROM THE ACTIONS
TO THE CONCEPT.
WE'RE STILL DEVELOPING AND
TRYING TO UNDERSTAND THE
CONCEPT.
SINCE 2007 AND 2019 ONE HEALTH
HAS BEEN IMPLEMENTED IN BRAZIL
AND LATIN AMERICA, IN 2012 I
RECEIVED A FULBRIGHT AWARD,
STARTED BUILDING TOGETHER WITH
PERSONS IN LATIN AMERICAN
COMMUNITIES THAT CENTERS FOR ONE
HEALTH RESEARCH AND STUDIES.
EXAMPLE OF ACCOMPLISHMENTS OF
ONE HEALTH CENTERS OF EXCELLENCE
IN BRAZIL AND LATIN AMERICA
SINCE 2012 AND THEREFORE ONE
HEALTH ACTIONS IN MATO GROSSO, I
HAVES CAL -- VISCERAL, THROUGH
THE SCHOOL OF VETERINARY
MEDICINE, PROFESSOR AND
RESEARCHER GOING TO COMMUNITIES
WITH THIS INTERDISCIPLINARY TEAM
OF STUDENTS OF DIFFERENT
BACKGROUNDS, DIFFERENT
DISCIPLINES.
AS WE CAN SEE, THIS HAPPENED IN
2015, AND ONLY NOW, NEXT WEEK IN
BRAZIL, WE'LL HAVE ONE HEALTH
WORKSHOP WITH MINISTRY OF
HEALTH.
SO, THE IMPLEMENTATION IS
ALREADY HAPPENING THROUGH
ACTIONS, BUT THE POLICIES ARE
STILL NOT READY YET.
ANOTHER EXAMPLE OF ANOTHER
ACCOMPLISHMENT IN COLOMBIA AND
BOLIVIA WITH RIVER COMMUNITIES,
BRING ENVIRONMENTAL EDUCATION
AND BIODIVERSITY THROUGH THE
COMMUNITIES.
NOT ONLY IN COLOMBIA BUT CHILE
AND PERU.
GOING THROUGH THE HIGHER
EDUCATION AT THE UNIVERSITY AND
RESEARCH LEVELS, THERE ARE
CENTERS OF EXCELLENCE OF ONE
HEALTH THAT UNITED AND MADE
MULTI-CENTRIC RESEARCH, IN THIS
CASE FOR COVID IMPACTS, AND IT
HAS BEEN PUBLISHED AS WELL FOR
THE IMPORTANCE OF ANIMALS IN THE
COVID PANDEMIC.
OTHER EXAMPLES, IN THE CENTER OF
EXCELLENCE WHICH THERE'S HUMAN
MEDICINE AND HUMAN HEALTH AND
HUMAN METRICS, AT THE SAME TIME
THEY ARE STUDYING THE
ENVIRONMENT AND PATH, ALSO
ANOTHER EXAMPLE, ANOTHER
SUCCESSFUL CENTER OF EXCELLENCE
WITH INDIGENOUS POPULATIONS
COLLECTING SAMPLES, WORKING IN
EDUCATION, AND WORKING TOGETHER
WITH THE COMMUNITY TO PREVENT
AND BRING SHALL HEALTH TO HUMAN
MEDICINE, ANIMAL MEDICINE, AND
THE ENVIRONMENT.
VERY IMPORTANT FOR US TO DISCUSS
THE CENTERS OF EXCELLENCE OF ONE
HEALTH IN THE AMAZON.
AS WE KNOW, THE MINING AND OTHER
CAUSES ARE DESTROYING THE AMAZON
FOREST, AND ALSO ALL THIS
DISTURBANCE OF THE ENVIRONMENT,
HOW IT'S AFFECTING OUR OWN
INDIGENOUS COMMUNITIES.
WE WORK DIRECTLY WITH THE
INDIGENOUS CENTERS, IN THIS CASE
WE'RE LEARNING FROM THE
INDIGENOUS MEDICINE HOW THAT CAN
BE BROUGHT TO POPULATION HEALTH.
LET'S DISCUSS A LITTLE BIT OF
SOCIAL AND ENVIRONMENTAL
DETERMINANTS OF HEALTH AND
IMPORTANCE OF PUBLIC POLICIES.
THE IMPACT OF CLIMATE CHANGE IN
HUMAN HEALTH IS VERY IMPORTANT.
ONE EXAMPLE OF CLIMATE CHANGE ON
HUMAN HEALTH AND ANIMAL HEALTH
FOR INSTANCE CHRONIC DISEASES
SUCH AS CARDIOVASCULAR DISEASES
AND OBESITY IS A DISEASE OF THE
ENVIRONMENT.
AND ALSO IN THIS ASPECT, HOW
IMPORTANT THE SOCIAL EQUITY TO
PREVENT THESE DISEASES THAT WILL
BE AFFECTED, SO VULNERABLE
POPULATIONS HAVE MORE FOR
INSTANCE CARDIOVASCULAR DISEASES
AS CHRONIC -- EXAMPLE OF CHRONIC
DISEASES.
LET'S GO TO THE POLICIES.
THE UNIFIED HEALTH SYSTEM OF
BRAZIL HAS BEEN CREATED SINCE
1988, AND, AGAIN, IT'S A FREE
ACCESS TO ALL, CONSULTATIONS,
SURGERIES, EMERGENCY AS WELL,
VACCINATIONS, CAMPAIGNS, AND
ORGAN DONATIONS AND TRANSPLANTS,
ALL FREE.
OF COURSE, THIS HAPPENED EVEN IN
THE CONCEPT OF ONE HEALTH WAS
ESTABLISHED AS WE CAN SHARE
ACTIONS COMING BEFORE
IMPLEMENTATION OF POLICIES, BUT
THIS IS A VERY IMPORTANT POLICY
IN BRAZIL, AND YOU CAN READ IN
DETAIL THE UNIFIED HEALTH SYSTEM
EXAMPLE OF ONE HEALTH APPROACH
IN BRAZIL.
TWENTY YEARS LATER, OR JUST NOW
LAST WEEK IN BERLIN, THROUGH THE
WORLD HEALTH SUMMIT, THE FIRST
POLICY WAS MADE THROUGH THE
WORLD -- QUADRIPARTITE
ORGANIZATION, WORKING FOR
HUMANS, PLANTS, THE ENVIRONMENT.
THERE ARE A LOT OF CHALLENGES IN
IMPLEMENTATION OF ONE HEALTH AS
WELL AS RESEARCH FINDINGS INTO
POLICY, EXCESSIVE BUREAUCRACY,
COULD BE POLITICS, POWER AT THE
TOP, COULD BE POLITICS IN THEIR
EXTREMES, WE CAN GO FURTHER IN
THE DISCUSSION.
IT IS VERY IMPORTANT AND I
INVITE ALL OF YOU, OUR
COLLEAGUES FROM MEDICINE AND
PHYSICIANS, TO PLEASE JOIN US ON
THE GROUPS THAT ARE FORMED FOR
INSTANCE THIS ONE ALLIANCE
AGAINST HEALTH RISKS IN THE
WILDLIFE TRADE.
ALSO PUBLICATION IS VERY
IMPORTANT, SO MANUSCRIPT, WORK,
COLLABORATE, COOPERATE, LET'S
MAKE PARTNERSHIPS SO WE CAN
SHARE AND BRING OUR KNOWLEDGE
AND OUR EXPERIENCE FOR A
SUSTAINABLE PLANET.
WITH SUSTAINABLE GOALS, THE
PEACE AND THE WAR ALWAYS BRING
MORE DISEASES AND INEQUALITY TO
HUMAN HEALTH, AND TO THE
ENVIRONMENT.
IT'S VERY IMPORTANT THAT WE WORK
TOGETHER AS PARTNERS TO BRING
SUSTAINABLE GOALS.
ONE HEALTH BRAZIL WORKS WITH
OVER 800 MEMBERS, AS YOU CAN SEE
THERE ARE ALL THESE PROJECTS OF
ONE HEALTH ACTION GOING ON IN
BRAZIL.
IMPLEMENTATION OF POLICIES IS
STILL UNDER PROCESS.
IT'S IMPORTANT POLICIES MUST BE
MADE AND IMPLEMENTED
IMMEDIATELY.
THANK YOU VERY MUCH.
I'M VERY GRATEFUL TO BE HERE AND
LOOKING FORWARD TO DISCUSS
FURTHER WITH ALL OF YOU.
>>THIS IS CLAUDIA BAMBS, FROM
CHILE.
PLEASED TO BE HERE.
TODAY I'M GOING TO TALK ABOUT
SCIENCE, SOCIETY, AND HEALTH
POLICIES TO TACKLE CHRONIC
DISEASES AND I WANT TO SHARE
WITH YOU SOME OF THE LESSONS
THAT WE HAVE LEARNED ABOUT THESE
POLICIES IN OUR COUNTRY.
AS OTHER COUNTRIES IN LATIN
AMERICA, CHILE EXPERIENCED RAPID
EPIDEMIOLOGIC TRANSITIONS,
DECREASING INFANT MORTALITY,
POPULATION AGING, AND CLEAR
SHIFT TOWARDS OBESITY AND
CHRONIC DISEASES.
WE ALREADY KNOW THE RISK FACTORS
BEHIND THESE EPIDEMICS.
TOBACCO, ALCOHOL, AND UNHEALTHY
DIET ARE THE MAIN RISK FACTORS
FOR THESE DISEASES.
THE ECONOMIC GROWTH IN CHILE HAS
LED TO LOW PHYSICAL ACTIVITY IN
GENERAL, AND A DIET THAT IS RICH
IN SATURATED FAT, SUGAR, SALT,
LOW IN FIBER.
IN 2019, THE ORGANIZATION FOR
ECONOMIC COOPERATION AND
DEVELOPMENT IDENTIFIED THE TOP
PUBLIC HEALTH CHALLENGES FOR OUR
COUNTRY.
AND THERE WERE THREE RISK
FACTORS THAT WERE IDENTIFIED.
FIRST OF ALL, SMOKING.
STILL VERY HIGH.
SECOND, ALCOHOL CONSUMPTION LOW
BUT RISING.
AND THIRD, OVERWEIGHT AND
OBESITY AMONG ADULTS AND
CHILDREN.
HERE YOU CAN SEE THE PREVALENCE
OF TOBACCO CONSUMPTION AMONG THE
GENERAL POPULATION IN CHILE,
ACCORDING TO OUR NATIONAL HEALTH
SURVEY.
ALTHOUGH WE CAN SEE DECREASING
TREND IN THIS PREVALENCE, STILL
1 IN 3 CHILEANS 15 YEARS OLD AND
ABOVE STILL SMOKES CIGARETTES.
WHICH IS VERY HIGH.
THERE WAS AN EFFECT THAT WAS
CALLED 2010 EARTHQUAKE EFFECT.
WE HAD AN IMPACT THAT WAS VERY
EVIDENT ON TOBACCO TAXATION DUE
TO THE URGENCY TO COLLECT FUNDS
TO REBUILD DEVASTATED AREAS.
THIS WAS ONE OF THE FACTORS WE
IDENTIFIED AS BEHIND THE
DECREASING TRENDS THAT WE ARE
SEEING NOW.
YOU HAVE HERE SUMMARY OF THE
PUBLIC POLICIES THAT WE HAVE
IMPLEMENTED IN OUR COUNTRY.
BEGINNING WITH RATIFICATION OF
THE W.H.O. FRAMEWORK MENTIONING
TOBACCO CONTROL, AND THEN IN
2010 WITH PRICE INCREASE, VERY
IMPORTANT, NOT ONLY A TAX
MODIFICATION BUZZ A TAX MOD --
BUT A TAX MODIFICATION
INCREASING FINAL PRICES TO THE
CONSUMERS.
AND FOLLOWED BY OTHER IMPORTANT
MEASURES SUCH AS SMOKE-FREE
PUBLIC SPACES LAW.
THE IMPACT HAS BEEN MEASURED AND
DEMONSTRATED IT'S VERY
EFFECTIVE, BUT WE STILL -- STILL
WE HAVE IMPORTANT WORK TO DO AND
NOW WE ARE WORKING ON THE
INTRODUCTION OF PLAIN PACKAGING
FOR TOBACCO, BANNING SMOKING IN
OPEN PUBLIC PLACES, BANS ON
MENTHOL AND OTHER FLAVORING,
INCREASE TOBACCO CESSATION
ACCESS, AND THIS IS A VERY
IMPORTANT POINT, AND REGULATE
NEWER TOBACCO PRODUCTS, SUCH AS
ELECTRONIC CIGARETTES AND CIGAR
PRODUCTS.
IN TERMS OF ALCOHOL, THE TREND
IS THAT OUR PREVALENCES OF
ALCOHOL CONSUMPTION ARE ON THE
RISE, AND THIS IS CONTRARY TO
OTHER DEVELOPED COUNTRIES.
WE KNOW THAT OUR TEENS START
DRINKING ALCOHOL AT THE AGE OF
13 YEARS OLD, AND 40% OF SCHOOL
AGE CHILDREN REPORT THAT FOR
THEM IT WOULD BE EASY OR VERY
EASY TO GET ACCESS TO ALCOHOL.
ALSO, AMONG HIGH SCHOOL
STUDENTS, BOTH WOMEN AND MEN,
THE PREVALENCE OF BINGE DRINKING
IS VERY HIGH.
THE CONTEXT FOR THIS IN CHILE,
WE STILL HAVE AN AGGRESSIVE
MARKETING OF ALCOHOL PRODUCTS,
TARGETED SPECIFICALLY TO YOUNG
PEOPLE.
YOU MAY IDENTIFY SOME OF OUR
MOST FAMOUS SOCCER PLAYERS AND
HOW SPORTS, SPECIFICALLY SOCCER,
HAVE BEEN USED BY THE ALCOHOL
INDUSTRY.
SO WE HAVE A PROBLEM WITH
MARKETING OF ALCOHOL THAT IS
VERY CLEAR, AND ALSO THERE IS A
LACK OF REGULATION OF
ADVERTISING AND SPONSORSHIP OF
ALCOHOL PRODUCTS.
BUT ALSO A HUGE PROBLEM IS THAT
ALCOHOL IS EASILY AVAILABLE, AND
ITS PRICE IS VERY LOW COMPARED
TO OTHER COUNTRIES.
FOR INSTANCE, FOLLOW ME IN
COMPARING THIS BOTTLE OF SPIRIT
IN ICELAND, THE SAME VOLUME
BOTTLE COSTS $84, COMPARED TO $4
IN OUR COUNTRY.
THEREFORE, IN TERMS OF ALCOHOL
CONSUMPTION, WE HAVE HAD SOME
PROGRESS BUT WE STILL HAVE A
LONG WAY TO FOLLOW WHAT IT HAS
BEEN ACCOMPLISHED WITH TOBACCO
CONTROL MEASURES.
SPECIFICALLY IN 2014, THERE WAS
A TAX MODIFICATION FOR ALCOHOL
BUT THAT TAX MODIFICATION LED TO
NO INCREASE IN PRICES OF
ALCOHOL, AND WAS COMPLETELY
ABSORBED BY THE ALCOHOL
INDUSTRY.
THEREFORE, IN TERMS OF FUTURE
DIRECTIONS, WE NEED TO WORK,
CHANGING THE TAX STRUCTURE TO
GET HIGHER PRICE IMPACT AND ALSO
WORK ON OTHER HEALTH POLICIES
INCLUDING REGULATION OF
MARKETING AND LABELING AND
AVAILABILITY OF ALCOHOLIC
BEVERAGES.
THIRD RISK FACTOR THAT I WANT TO
MENTION TODAY, HIGH PREVALENCE
OF OBESITY AMONG ADULTS IN
CHILE, SECOND ONLY BEHIND THE
UNITED STATES IN THIS
COMPARISON, AND IN TERMS OF
CHILDREN, TOP ONE AMONG THE
ORGANIZATION FOR ECONOMIC
COOPERATION AND DEVELOPMENT IN
2019.
MORE RECENTLY, NATIONAL SURVEY
WAS CONDUCTED FROM KINDERGARTEN
TO NINTH GRADE STUDENTS, AND WE
FOUND 31% OF SCHOOL CHILDREN
SUFFERING FROM OBESITY, AND
ALMOST 11% OF OUR CHILDREN
SUFFERING FROM SEVERE OBESITY.
BEHIND THESE STATISTICS WE'VE
BEEN MONITORING SUGAR-SWEETENED
BEVERAGES AMONG OUR POPULATION,
AND WE KNOW THAT SADLY, CHILE IS
ON THE TOP PLACE IN TERMS OF
SALES OF CALORIC SOFT DRINKS,
EVEN HIGHER THAN IN UNITED
STATES, MEXICO, AND BRAZIL.
SO, IN TERMS OF PUBLIC POLICIES,
WE HAVE A HISTORY OF STRATEGIES
INCLUDING TRANSFAT LABELING,
SUGAR-SWEETENED BEVERAGES TAX,
FOOD LABELING LAW THAT WAS
PASSED AND IMPLEMENTED SINCE
2016, WITH NOT ONLY WARNING
SIGNS ON UNHEALTHY FOODS THAT
BLOCK FIELDS BUT ALSO
RESTRICTION OF MARKETING AND
ADVERTISING OF UNHEALTHY FOOD
FOR CHILDREN UNDERSTOOD THE
A GE -- UNDER THE AGE OF 14
YEARS OLD, RESTRICTION OF
UNHEALTHY FOOD SALE,
DISTRIBUTION OR PROMOTION AT
SCHOOLS.
THIS IS HAVING AN IMPACT IN
TERMS OF FOOD INDUSTRY
REFORMULATION, IN TERMS OF
DECREASING SUGAR-SWEETENED
BEVERAGE USE, AND ALSO CHANGING
THE PREFERENCES AND CHOICES OF
CONSUMERS AND SEVERAL
EVALUATIONS ARE STILL IN
PROGRESS.
IN TERMS OF FUTURE DIRECTIONS,
WE NEED TO MOVE FORWARD IN
EFFECTIVE TAXATION AND
SUGAR-SWEETENED BEVERAGES
FOLLOWING EXAMPLES OF OTHER
COUNTRIES IN THE AMERICAS, AND
WORK ON STRENGTHENING THE
IMPLEMENTATION AND ENFORCEMENT
OF THE FOOD LABELING LAW.
ALSO INCREASE IN FRUIT AND
VEGETABLE MARKETING AVAILABILITY
AND FINANCIAL ACCESS, WHICH IS A
PROBLEM NOW IN OUR COUNTRY, AND
ALSO INCLUDE FAST FOOD AND
ALCOHOLIC BEVERAGES IN
NUTRITIONAL LABELING
REGULATIONS.
THEY HAVE NO REGULATIONS,
LABELING REGULATIONS, CURRENTLY.
THIS WAS ONE OF THE CAMPAIGNS IN
TERMS OF THE NEW LAW, TRYING TO
ADVERTISE THESE TO OUR
POPULATION, THEY PREFER FOOD
ITEMS WITH LESS BLACK SEALS.
IF THEY DON'T HAVE ANY BLACK
SEALS, EVEN BETTER.
I WOULD LIKE TO TALK ABOUT
SOCIETY TACKLING THIS COMPLEX
SCENARIO.
WELL, THE PROBLEM THAT WE
IDENTIFIED IS THAT MOST CURRENT
DISEASES ARE RESEARCH ARISES
FROM EUROPE AND USA, WHOSE
CHARACTERISTICS ARE DIFFERENT
FROM LATINO POPULATION.
IN 2013, SEVERAL SCIENTISTS IN
OUR COUNTRY CREATED THE
ADVANTAGED CENTER FOR CHRONIC
DISEASE AND MAUCO STUDY, THE
FIRST POPULATION-BASED COHORT
STUDY FOR CHRONIC DISEASE IN
MAULE, CENTRAL CHILE.
THIS IS A JOINT EFFORT FROM
BASIC SCIENTISTS, CLINICIANS,
AND EXPERTS IN EPIDEMIOLOGY AND
PUBLIC HEALTH, AND HAS A
PARTICULARLY TO BE LOCATED IN A
COMMUNITY DEDICATED MAINLY TO
AGRICULTURAL ACTIVITIES.
WE HOPE THIS INFORMATION AND
KNOWLEDGE THAT WE'RE GENERATING
IN THE MAULE COHORT WILL BE USED
FOR OTHER COUNTRIES IN SOUTH
AMERICA AND BECAUSE OF THE
SHARED GENETIC AND SOCIOCULTURAL
HERITAGE.
WE FACE DIFFICULT SCENARIO OF
CONFLICTSES OF INTEREST AND
AGGRESSIVE LOBBYING BY THE
TOBACCO, ALCOHOL, AND FOOD
INDUSTRY IN OUR COUNTRY.
SO, NOW MORE THAN EVER, WE NEED
THAT HEALTH PROFESSIONALS,
SCIENTISTS, THE WHOLE COMMUNITY,
BECOME EMPOWERED AND TRAINED TO
SUPPORT AND ADVOCATE FOR BOTH
INDIVIDUAL AND POPULATION-WIDE
SYSTEMIC CHANGES.
THE ROLE OF LOCAL GOVERNMENTS,
VERY IMPORTANT IN MONITORING AND
REGULATING THE LOCAL MARKETS, AS
WELL AS IN GENERATING INCENTIVES
TO IMPROVE ACCESS TO HEALTHIER
OPTIONS.
AT THE CASE OF TOBACCO CONTROL,
THAT WE HAVE BEEN TALKING ABOUT
IN THIS PRESENTATION, PROVIDES
HOPE AND AN IMPORTANT LESSON.
AND THE LESSON IS THAT WHILE THE
PUBLIC HEALTH POLICIES ARE
EFFECTIVE, THEY ARE ASSOCIATED
WITH POPULATION AND CAN BE
IMPLEMENTED IN CHILE AND IN
OTHER COUNTRIES IN LATIN
AMERICA.
THANK YOU FOR YOUR ATTENTION.
>>PUBLIC POLICIES THAT PROMOTE
HEALTH AND WELL-BEING,
ESPECIALLY ECONOMICALLY
DISADVANTAGED FAMILIES,
ESPECIALLY IMPORTANT SINCE ONSET
OF CORONA PANDEMIC IN 2020,
CATCH TRANSFER AND DOMESTIC
VIOLENCE POLICIES, IN LATIN
AMERICA.
A VARIETY OF CO-AUTHORS OVER THE
LAST 2 1/2 YEARS.
MY PRESENTATION OUTLINES
TRANSFERS, INVESTMENT IN FAMILY
HEALTH, SECONDLY I DEFINE BEST
PRACTICES IN CASH TRANSFERS,
THAT ENSURE BROAD COVERAGE FOR
THOSE AT RISK OF POVERTY AND
ADEQUATE LEVELS TO COVER BASIC
NEEDS.
THIRD, I DISCUSS EVOLUTION.
SECOND, I DISCUSSION POLICIES TO
ADDRESS INTIMATE PARTNER AND
DOMESTIC VIOLENCE, SEPARATE,
SOME LINKS TO CASH TRANSFERS AS
WELL.
AND HERE EVEN
MULTI-DIMENSIONALITY OF PROBLEM
OF DOMESTIC VIOLENCE WITH MY
CO-AUTHORS DEFINE BEST
PRACTICES, THE BUNDLE OF
SERVICES, COORDINATING SYSTEM
INCLUDING ACCESSIBLE EMERGENCY
AND HEALTH SERVICES, EFFECTIVE
PROTECTION MECHANISMS, SAFELY
SHELTER, ECONOMIC ASSISTANCE.
THEN WE -- I SHARE PRELIMINARY
FINDINGS FROM RESEARCH ON THIS
BUNDLE OF POLICIES IN LATIN
AMERICA, AND FINALLY DISCUSS
POLICY RECOMMENDATIONS.
SO, FIRST, CASH TRANSFERS TO
HOUSEHOLDS AT RISK.
SO, WE FOCUS TO SOCIALLY
VULNERABLE GROUPS, ALSO COG
COGNIZANT OF THE FACT HALF THE
POPULATION IN THE REGION IN
LATIN AMERICA LABOR INFORMALLY,
THEY ARE NOT PART OF
CONTRIBUTORY CASH TRANSFER
SYSTEMS.
AND BEFORE THE PANDEMIC THE KEY
GROUPS THAT WERE INCLUDED IN
SUCH PROGRAMS IN EXISTING POLICY
INFRASTRUCTURES WERE ELDERLY,
DISABLED, THE CHILDREN.
SO BASICALLY INDIVIDUALS WHO ARE
NOT ABLE-BODIED ADULTS, WHO WERE
EXPECTED TO PROVIDE INCOME FOR
THEMSELVES THROUGH PARTICIPATION
OF THE LABOR MARKET.
WE FOCUS ESPECIALLY ON TRANSFERS
TO CHILDREN.
AND TODAY TRANSFERS TO CHILDREN
EXIST IN ALMOST ALL LATIN
AMERICAN COUNTRIES, HAVE BEEN
DEVELOPED OVER THE LAST 25
YEARS, AND TARGET MOTHERS, UNDER
ASSUMPTION MOTHERS CAN AND WILL
INVEST IN CHILDREN.
EVEN IF IT WASN'T INTENDED, A
BENEFICIAL SIDE EFFECT, WASN'T A
GOAL OF THE POLICY, A BENEFICIAL
SIDE EFFECT IS THAT IT PUTS
INCOME IN THE HANDS OF WOMEN WHO
HAVE HISTORICALLY NOT HAD
INCOME, ESPECIALLY POOR WOMEN IN
THE REGION, AND HAS ALSO
PROMOTED ECONOMIC AUTONOMY OF
THESE WOMEN.
OVERALL, POSITIVE HEALTH EFFECTS
OF CASH TRANSFERS TO CHILDREN
VIA MOTHERS HAVE BEEN
EXTENSIVELY DOCUMENTED IN BOTH
MEDICAL AND NON-MEDICAL
LITERATURE AND YOU MIGHT BE
AWARE OF THIS LITERATURE.
BUT THEY HAVE HAD A POSITIVE
EFFECT ON CHILD NUTRITION,
EDUCATION, WOMEN'S HEALTH,
HOUSEHOLD WELL-BEING, EVEN OUR
SECOND TOPIC, REDUCTION OF
INTIMATE PARTNER VIOLENCE, AND
ON THIS LAST ISSUE THE
MECHANISMS THE LILT A --
LITERATURE HAS FOUND, TARGETING
WOMEN, INCREASED WOMEN'S
ECONOMIC AUTONOMY, HENCE
BARGAINING POWER, PROVIDES
PROTECTIVE BUFFER AGAINST
VIOLENCE FROM PARTNERS AND
SECONDLY CASH TRANSFERS INCREASE
HOUSEHOLD ECONOMIC WELL-BEING
OVERALL, AND ABUSE, STRESSES
RELATED TO EXTREME FINANCIAL
INSECURITY AND PROVIDE
PROTECTIVE BUFFER AGAINST
INTIMATE PARTNER VIOLENCE.
SO, CASH TRANSFERS TO SOCIALLY
VULNERABLE HOUSEHOLDS, SINCE
2020 IN THE REGION, LET ME START
OUT BY SAYING THAT DESPITE THE
POLICY INFRASTRUCTURE CASH
TRANSFER PROGRAM TO CHILDREN AND
DOCUMENTED BENEFITS, IN FACT,
ALMOST HALF THE CHILDREN IN THE
REGION STILL LIVE IN POVERTY AT
THE EVE THE PANDEMIC, AGE IS THE
BEST PREDICTOR OF WHETHER YOU'RE
IN POVERTY OR NOT.
0-14 YEAR OLDS, 46% WERE AT
POVERTY IN THE REGION COMPARED
TO 15% OF THE ELDERLY, AND
INDEED WHEN THE PANDEMIC HIT THE
REGION, THE ELDERLY WERE
EPIDEMIOLOGICALLY MOST AT RISK,
THOSE SOCIALLY MOST AT RISK WERE
HOUSEHOLDS WITH CHILDREN.
ONCE GOVERNMENTS MADE POLICIES
OF SOCIAL ISOLATION, DISTANCING,
EVEN COUNTRIES THAT WEREN'T
STRONG, ECONOMIC FALLOUT CREATED
MASSIVE POTENTIAL, HUMANITARIAN
CRISIS AMONG VULNERABLE
HOUSEHOLDS THAT FOR MANY OF
THESE HOUSEHOLDS WAS EQUIVALENT
OR EXCEEDED THE EFFECT OF THE
VIRUS ITSELF.
WE LOOK AT CASH TRANSFERS TO
CHILDREN IN EXISTING PROGRAMS,
WHAT HAPPENED TO THEM SINCE
MARCH 2020, AND WE ALSO LOOK AT
THE CREATION OF NEW CASH
TRANSFERS TO INFORMAL
HOUSEHOLDS.
IF YOU LOOK, DESPITE EXITING
CONTRIBUTOR AND NON-CONTRIBUTORY
PROGRAM, ONE-THIRD OF HOUSEHOLDS
IN THE REGION WERE IN NEITHER
PROGRAM, RELIED ENTIRELY ON
PRIVATE SOURCES OF INCOME, AND
CORRELATES HIGHLY WITH INCOME,
SO ADDITIONAL VERY IMPORTANT
SOCIAL PROTECTION POLICY WAS TO
CREATE EMERGENCY CASH TRANSFERS
TO WHAT WE CALL INFORMAL
HOUSEHOLDS.
AND HERE WE SHOWED THE RESULTS,
I'LL TRY AND GET THROUGH THIS
QUICKLY.
I CAN CERTAINLY SHARE DETAILS OF
OUR MEASUREMENTS IN THE Q&A, BUT
THIS YEAR BASICALLY THIS GRAPH
SHOWS COVERAGE, IN THE EMERGENCY
CRASH TRANSFER PROGRAM
GOVERNMENTS CREATED TO MAKE UP
FOR LOST INCOME OF INFORMAL
WORKERS EXPECTED TO SHELTER AT
HOME.
SO THE GREEN GRAPH MEASURES
PERCENTAGE OF THE OCCUPIED
POPULATION AS RECIPIENTS IN THE
NEW TRANSFERS PROGRAM AS A SHARE
OF THE TOTAL INPUT POPULATION IN
RED, BASICALLY FUNCTIONAL NEED
FOR THIS CASH TRANSFER, SO YOU
CAN SEE IT'S QUITE IMPRESSIVE.
IN FEBRUARY 2020, NONE OF THESE
PROGRAMS EXISTED.
THERE WAS A LOT OF CREATION OF
NEW AND BROAD EMERGENCY CASH
TRANSFER PROGRAMS.
YOU CAN SEE SIGNIFICANT
VARIATION FOR VERY BRAZIL AND
BOLIVIA, ARGENTINA TO MINIMAL
AND NO COVERAGE IN MEXICO.
AND ON THE RIGHT-HAND SIDE, WE
MEASURED EVOLUTION OF COVERAGE
IN EXISTING CASH TRANSFER
PROGRAMS TO CHILDREN, AND HERE
100% IS THE TOTAL NUMBER OF
CHILDREN IN THE COUNTRY.
AND IF WE -- INITIAL GRAPH IS
PRE-COVID COVERAGE.
THIS ALSO SHOWS THAT IF WE
REMEMBER THAT ABOUT HALF THE
CHILDREN IN THE REGION LIVED IN
POVERTY PRE-COVID, VERY FEW
COUNTRIES IN TERMS OF COVERAGE,
ADEQUATE COVERAGE BEFORE THE
PANDEMIC HIT.
WE CAN ALSO SEE THAT GOVERNMENTS
DIDN'T REALLY MUCH EXTEND
COVERAGE DURING THE FIRST YEAR
OF THE PANDEMIC AND THESE GRAPHS
SHOWED EVOLUTION OF THAT, OR THE
FIRST YEAR OF THE PANDEMIC, WITH
EXCEPTION OF ECUADOR.
THAT DOESN'T MEAN THEY DIDN'T
USE THESE PROGRAMS AT ALL WHERE
WE ACTUALLY SEE SIGNIFICANT
EFFORTS TO HELP POOR HOUSEHOLDS
IN THE ADEQUACY, WITH EXISTING
TRANSFERS, SO HERE WE MEASURE
THE AMOUNT THAT HOUSEHOLDS GOT,
AND BASICALLY WHAT GOVERNMENTS
DID WAS INCREASE THE VALUE OF
THE TRANSFERS TO, AND HERE IN
THIS GRAPH, WE LOOKED AT CASH
COVERAGE IN THE EXISTING CASH
TRANSFER PROGRAMS TO CHILDREN.
AND WHAT THIS SHOWS IS THE RED
LINE IS THE EXTREME POVERTY
LINE, AND WE MEASURE THESE, WE
USE TYPICAL HOUSEHOLD OF FOUR
PEOPLE, TWO ADULTS, TWO
CHILDREN, AND MEASURE AMOUNT OF
TRANSFERS.
THE AVERAGE IS MONTHLY,
TRANSFERS, AND OVER THE FIRST 12
MONTHS OF THE PANDEMIC.
AND WHAT THIS SHOWS IS THE GREEN
GRAPH HERE IS PRE-COVID
COVERAGE, ADEQUACY, WHICH IS IN
ALL COUNTRIES MUCH BELOW THE
EXTREME POVERTY LINE.
AND THEN WE SHOW HOW IN MANY
COUNTRIES THE ADEQUACY OF THE
TRANSFERS INCREASED, QUITE
DRAMATICALLY, SO 7 OUT OF 10
INCREASED ADEQUACIES OF
TRANSFERS, IN BRAZIL AND CHILE
THEY CAME TO BASICALLY MEETING
THE EXTREME POVERTY LINE.
AND HERE THIS IS THE SAME
MEASUREMENTS, BUT FOR THE NEW
EMERGENCY CASH TRANSFER PROGRAM.
HERE WE ALSO SEE GOVERNMENTS,
THE LEVELS AT WHICH THEY GAVE
CASH TRANSFERS DIFFERED QUITE A
BIT OVER COUNTRIES, AND HERE
AGAIN ALSO BRAZIL AND CHILE COME
CLOSEST TO MEETING BASICALLY,
THE BASIC NEEDS LEVEL IN
ADEQUACY.
WHAT WE THEN DO IS KIND OF
POPULATE ALL THIS TOGETHER IN
TERMS OF ADEQUACY AND COVERAGE
ANDED -- AND ADEQUACY IS
MEASURED, HOW BROAD THE COVERAGE
IS.
IN BRAZIL AND CHILE WE DO THE
BEST IN TERMS OF PROVIDING BROAD
ADEQUACY, MEXICO DOES THE LEAST.
SECOND, POLICIES TO ADDRESS
INTIMATE PARTNER DOMESTIC
VIOLENCE, A RESEARCH PROJECT I'M
DOING WITH TWO GRADUATE
STUDENTS, BRIEFLY THE CONTEXT IS
ABOUT ONE-THIRD OF WOMEN OF
REPRODUCTIVE AGE REPORT HAVING
INTIMATE PARTNER VIOLENCE,
THERE'S SIGNIFICANT LITERATURE
ON IMPACTI DON'T HAVE TIME TO GO
INTO THAT.
WHAT WE FOCUSED HERE IN RELATION
TO IMPACT OF THE PANDEMIC, WE
LOOKED AT SERVICES FOR
SURVIVORS, THOSE AT IMMEDIATE
RISK OF INTIMATE PARTNER
VIOLENCE.
GIVEN THE THREAT OF THE COVID-19
SHELTER AT HOME POLICIES
PRESENTED TO THE THREAT OF
DOMESTIC VIOLENCE IN THE HOME
AND INDEED STUDIES HAVE SHOWN
DOMESTIC VIOLENCE DID INCREASE,
THE POLICIES, ECONOMIC
INSECURITY, ALL THE STRESSORS,
SO ON.
AGAIN, LOOKING AT THIS ISSUE,
IT'S A VERY CHALLENGING ISSUE
AND COMPLEX GIVEN THE DEPENDENCY
BETWEEN AGGRESSOR AND VICTIM OR
SURVIVOR.
AND SO IT'S HARD TO KNOW KIND OF
ANALYZE POLICY INTERVENTIONS ON
THEIR OWN, THEY TEND TO -- IT'S
MORE THAN ONE TYPE OF POLICY
THAT IS NEEDED TO ADDRESS THEM.
WE ALSO DON'T HAVE A LOT OF
IMPACT EVALUATION STUDIES.
WE DO KNOW, HOWEVER, FROM
STUDIES IN THE REGION THAT
PROVISION AND SOCIOECONOMIC
SECURITY IS IMPORTANT NOT JUST
PREVENTIVE BUT ALSO IN ALLOWING
VICTIM OR SURVIVOR TO LEAVE THE
SITUATION OF VIOLENCE AND START
A NEW LIFE SOMEWHERE ELSE, FOR
HERSELF AND HER CHILDREN AS
WELL.
WOMEN CENTERS, WOMEN'S EMERGENCY
CENTERS, ONE-STOP SHOP, LEGAL,
MEDICAL, SOCIAL SERVICES IN ONE
SPOT HAVE BEEN FOUND TO BE
EFFECTIVE.
AND FINALLY ANKLE BRACELETS THAT
CAN MONITOR.
SO, WHAT WE DO IS WE LOOKED AT
THE POLICIES AND THIS BUNDLE OF
SERVICES, RELATED TO BEST
PRACTICES, AND SO WE'RE
CURRENTLY COLLECTING -- IT'S
COMPLICATED BECAUSE THERE'S NO
SYSTEMATIC INFORMATION
AVAILABLE, WE'RE LOOKING AT NINE
COUNTRIES AND WE'RE MEASURING
HOTLINES, ACCESS TO THEM,
EMERGENCY CENTERS, LEGAL
SERVICES, HEALTH SERVICES, AND
SOCIOECONOMIC PROGRAMS, LOOKING
AT WHETHER AND HOW THERE'S
COORDINATION AMONG THESE
SERVICES.
BRIEFLY, SOME PRELIMINARY
FINDINGS WE HOPE TO PUBLISH A
REPORT BY THE END OF THE YEAR ON
IT, BUT 7 OUT OF 9 HAVE
DEDICATED HOT LINES, 7 OUT OF 9
HAVE EASILY ACCESSIBLE ONLINE
SERVICE INFORMATION, INCLUDES
SOME FORM OF WOMEN'S EMERGENCY
CENTERS, BUT THERE IS LARGE
VARIATION IN THE NUMBER OF
CENTERS, SERVICES OFFERED,
COORDINATION, OFTEN INCLUDES
NETWORK OF SHELTERS, AGAIN
VARIATION, HEALTH AND POLICE,
HOW TO HANDLE VIOLENCE, HOWEVER
THERE'S VERY LITTLE SYSTEMATIC
INFORMATION ABOUT HOW THEY ARE
ACTUALLY IMPLEMENTED.
ONE WAS NATIONAL LEVEL BROADLY
IMPLEMENTED EFFECTIVE PROGRAM,
IN TERMS OF SOCIOECONOMIC
ASSISTANCE REQUIRES NATIONAL
LEVEL HOUSING PROGRAM FOR
SURVIVORS AND ONE ARGENTINA HAS
NEW NATIONAL LEVEL CASH TRANSFER
PROGRAM.
THE MAIN CHALLENGES, ON THE
BASIS OF PRELIMINARY FINDINGS,
THAT WE FIND FOR ACHIEVING BEST
PRACTICES, LACK OF SUFFICIENT
AND STABLE BUDGET COMMITMENTS TO
ALL THESE KEY SERVICES, AND ALSO
LACK OF COORDINATION.
NOT JUST MONEY BUT ALSO
COORDINATION, ACROSS GOVERNMENTS
AND CIVIL SOCIETY SERVICES.
I'M ALMOST OUT OF TIME.
BEST PRACTICES POLICY
RECOMMENDATIONS FOR CASH
TRANSFERS AS WELL AS DOMESTIC
VIOLENCE SERVICES, DESPERATE
NEED FOR STABLE RESEARCH
ALLOCATION, AND FOR BUNDLE OF
DOMESTIC VIOLENCE SERVICES.
INVESTMENT IN COORDINATION,
BETWEEN CASH TRANSFER AND
DOMESTIC VIOLENCE AS MUCH AS,
AND BETWEEN DIFFERENT TYPES AND
DIMENSION OF DOMESTIC VIOLENCE
SERVICES.
AND HERE WHAT'S NEEDED IS
INTERSECTING AGENCIES WITH HIGH
PROFILE THAT PRIORITIZE THESE
ISSUES.
INVESTMENT IN PUBLICLY AVAILABLE
ONLINE RESOURCES, INTERNET
CONNECTIVITY, AND FINALLY LAST
BUT NOT LEAST INVESTMENT IN DATA
COLLECTION, SYSTEMATIC DATA
COLLECTION, TAKEUP RATES,
IMPACTS EVALUATION, AND HERE
ALSO AN IMPORTANT ROLE, NOT JUST
FOR MINISTRIES BUT AGENCIES TO
DO ANALYSES OF HOW GOVERNMENT
AGENCIES ARE PERFORMING.
I'LL STOP HERE.
I HAVE A LIST OF SITES FOR
ANYBODY INTERESTED BUT I'M OUT
OF TIME.
THANK YOU.
>>HELLO, EVERYONE I'M DR.
CAROLINA SANABRIA, MODERATOR FOR
THIS SESSION.
THANK YOU SO MUCH TO DR.
PATON-BREWER FOR TALKING ABOUT
ONE HEALTH, FOR DR. BAMBS FOR
TALKING ABOUT POLICIES INVOLVING
OBESITY, TOBACCO, AND ALCOHOL IN
CHILE AND TO DR. BLOFIELD FOR
TALKING TO US ABOUT DOMESTIC
VIOLENCE AND CASH TRANSFER
POLICIES.
FIRST STARTING WITH INDIVIDUAL
EASY FOR RESPECTIVE SPEAKERS AND
THEN WE'RE GOING TO BE ASKING
MORE GENERAL QUESTIONS AND WE
WANT THIS SESSION TO BE
INTERACTIVE, SO PLEASE FEEL FREE
TO JUMP IN IF YOU HEAR SOMEBODY
ELSE TALKING ABOUT A TOPIC AND
YOU WANT TO ADD SOMETHING.
WE REALLY HOPE THIS IS A TIME
FOR RICH DISCUSSION.
I'M GOING TO START OFF WITH
ASKING DR. PETTIAN-BREWER A
QUESTION.
THANK YOU FOR YOUR PRESENTATION
ON ONE HEALTH.
A QUESTION FROM THE AUDIENCE,
WITH REGARDS TO POLICIES AND
THEIR IMPACT ON CHRONIC DISEASES
AND WE'D LIKE TO KNOW IF YOU
COULD LIST PERHAPS EXAMPLES OF
SOME OF THOSE POLICIES.
>>AS I MENTIONED BEFORE, THE
IDEA IS TO BRING THE ONE HEALTH
CONCEPT TO OUR AUDIENCE SO WE
CAN, AS I'LL GIVE EXAMPLES
LATER, WE CAN WORK TOGETHER.
SO IT IS -- POLICIES, IT DEPENDS
ON WHICH FIELD WE'RE WORKING ON,
AND THAT'S HOW SOME HAVE ALREADY
IMPLEMENTED, OTHERS ARE NOT
IMPLEMENTED.
SO SPECIFICALLY FOR ONE HEALTH,
THERE ARE NO POLICIES
IMPLEMENTED YET, AND AS WE CAN
SEE THAT ONE HEALTH IS A
HOLISTIC APPROACH TO THE HEALTH,
HOW WE'RE GOING TO DEAL WITH
DISEASES, TOGETHER, DIFFERENT
STAKEHOLDERS, DIFFERENT
PROFESSIONALS, HOW WE CAN WORK.
SO COMING FROM THE POLICIES,
WE'RE TALKING ABOUT RESEARCHERS,
WE'RE TALKING ABOUT COMMUNITY
LEADERS, AND THEN WE'RE TALKING
WITH GOVERNMENT AND GOVERNANCE.
WE'RE NOT TALKING TO EACH OTHER
YET.
SO SOMETIMES THEY ARE DEVELOPING
THE POLICIES, BUT IT'S NOT IN A
PAPER YET AND IT'S NOT
IMPLEMENTED.
AND HERE WE ARE WITH THE
RESEARCH RESULTS, WITH THE
COMMUNITY, BUT WE'RE NOT TALKING
YET WITH EACH OTHER.
SO IF THERE ARE NUMBERS, YES,
EVEN PRESIDENTS PRESIDENTS
SIGNED -- OBAMA SIGNED A ONE
HEALTH AGREEMENT BUT IT'S NOT
YET KNOWN EVERYWHERE, OR
SENATORS IN EACH STATE HAS
ALREADY APPROVED THE ONE HEALTH
CONCEPT, BUT NOT EVERYBODY KNOWS
YET.
I'M HERE IN BRAZIL TODAY, AND
THE SENATE ARE MEETING TODAY TO
IMPLEMENT, TO HAVE SIGNED A
DOCUMENT THAT THERE'S A MEETING
HAPPENING IN ONE STATE, ANOTHER
MEETING OF RESEARCHERS OF THE
SAME TALK IN ANOTHER STATE.
SO I THINK IT'S HARD, IT IS VERY
GOOD.
WE NEED TO HAVE POLICY, IT WILL
BE EVEN IMPORTANT FOR DR. MERIKE
WHEN WE NEEDS THE FUNDING, THE
CASH TO GO, THERE'S NOT YET
WHERE IS IT GOING.
SO I THINK I WOULD LIKE TO BRING
FIRST THE DIFFICULTIES WE HAVE
WHEN WE TALK ABOUT PUBLIC
POLICIES THAT WE NEED IT, BUT IT
IS HARD TO HAVE EVERYBODY
TALKING THE SINGLE LANGUAGE, I
WILL SAY, AS TO BRING THE
CONTROVERSY HERE.
WE STILL NEED WORK TO BE DONE
BUT I'M GLAD WE'RE ALL THE HERE
TOGETHER.
>>THANK YOU.
>>HOPEFULLY TO HELP, TO BRING
THE DISCUSSION.
>>THANK YOU SO MUCH FOR THE
ANSWER TO YOUR QUESTION.
SOUNDS LIKE WHAT YOU'RE
DESCRIBING IS THAT YOU'RE TRYING
TO LAY DOWN THE FOUNDATION AND
INFRASTRUCTURE FIRST IN ORDER TO
HAVE THAT SERVE AS A CATALYST
FOR DEVELOPING POLICIES.
DR. BAMBS HAS A COMMENT THAT SHE
WANTS TO SAY.
>>YEAH, THANK YOU.
CAROLINA, YOU GAVE US PERMISSION
TO JUMP IN.
I HAVE A QUESTION FOR MY
COLLEAGUE, CHRISTINA, IN TERMS
OF THE ONE HEALTH CONCEPT.
WE HAVE BEEN WORKING WITH NEW
FRAMEWORK HERE IN MY UNIVERSITY
IN CHILE, BUT ONE THING THAT I
WOULD LIKE YOU, IF YOU CAN
COMMENT ON, IS THAT AS FAR AS I
HAVE UNDERSTOOD, THIS NEW
CONCEPT WAS BEGUN, TRYING TO
UNDERSTAND THE WHOLE PHENOMENON
FROM THE DISEASE FRAMEWORK, HOW
TO PREVENT DISEASES THAT CAN BE
CAUSED OR TRANSMITTED BY VECTORS
OR WHATEVER, MOSQUITOES OR CATS
AND DOGS, BUT I'M BRINGING THE
WHOLE CONCEPT OF THE ENVIRONMENT
TOGETHER.
BUT MY POINT IS HOW DO YOU SEE
PROMOTION OF HEALTH AND
PREVENTION OF DISEASES FROM THIS
NEW CONCEPT OF ONE HEALTH.
CAN WE SHIFT A LITTLE BIT THE
VIEW FROM THE DISEASE MODEL TO
WHAT'S A MORE PROMOTIONAL MODEL,
AND MAYBE YOU ARE ALREADY DOING
THAT.
BUT THAT'S MY COMMENT.
IF YOU CAN SHARE SOME THOUGHTS.
>>YES, THANK YOU, CLAUDIA.
I SAW YOUR NAME, YES, A GROUP
FROM ONE HEALTH.
WE STILL NEED TO PUT TOGETHER
THE CONNECTIONS.
I WAS NOT ABLE, AND IT TAKES A
SEMESTER TO TEACH ONE HEALTH
HISTORY AND CONCEPT BECAUSE OF
MISCONCEPT OF ONE HEALTH,
USUALLY WHEN WE TALK ONE HEALTH,
VETERINARIANS AND INFECTIOUS
DISEASE PEOPLE JUMP IN, WE'RE
TAKING CARE OF DISEASES,
PREVENTION, ZOONOSIS.
ONE HEALTH IS BEYOND ZOONOTIC
DISEASES, IT IS BEYOND DISEASES,
IT'S THE OPPOSITE.
IT IS HOUSING, THE INDIGENOUS
BRAIN, SO THE ENVIRONMENTAL AND
EVERYBODY HEALTH INCLUDING
SPIRITUAL, TODAY I TALK WITH
INDIGENOUS POPULATION,
IMPORTANCE OF SPIRITUAL AND
CULTURAL SHARING, THESE
POPULATIONS ALREADY HAVE, WHICH
IS BALANCE OF THE ENVIRONMENT.
AGAIN, IT DEPENDENTS WHO YOU'RE
TALKING TO, PREVENTING DISEASES
TO THE NEXT PANDEMIC, AND
OTHERS, BRINGING IN AMERICAN
POINT OF VIEW NOW WITH DOMESTIC
VIOLENCE.
AS VETERINARIANS WE'RE THE FIRST
LINE TO DETECT VIOLENCE IN THE
HOUSEHOLD BECAUSE OF THE PETS.
WE DON'T KNOW WHAT TO DO.
BECAUSE WE KNOW WHAT IS
HAPPENING, WE HAVE AN ANIMAL
WHICH WAS VIOLATED OR SOMETHING,
BUT AS VETERINARIANS WE CANNOT
ACT AS PSYCHOLOGISTS AND
PSYCHIATRISTS AND DON'T HAVE A
SOCIAL SCIENCES GROUP TO GO
KNOCK THE DOOR, PLEASE COME AND
HELP.
ACCUMULATORS, WHOEVER IS
ACCUMULATING ANIMALS, ALSO THIS
MENTAL HEALTH.
SO BRING HERE THE ONE HEALTH
BRINGS THE OPPOSITE
BRINGING THE HEALTH INCLUDING
MENTAL HEALTH, SPIRITUAL
CONNECTION, AND FINANCIAL
ECONOMICS HEALTH AND ALSO
PLANETARY HEALTH.
IT'S SO COMPLEX BUT I THINK
CLAUDIA WOULD LIKE TO SAY AS
WE'RE ALL GROWING TOGETHER, IT
IS DIFFERENT SHIFT, THE HISTORY
I BROUGHT TOGETHER IS FROM ONE
MEDICINE, COMPARED TO MEDICINES,
THE VETERINARIANS, OH, I KNOW
ALREADY, I'VE BEEN DOING THIS MY
ENTIRE LIFE.
IT'S MORE.
SOCIAL SCIENCE, ANTHROPOLOGY
COMES TO BRING THIS.
IT IS FOCUSING ON THE HEALTH,
PLANETARY HEALTH, GLOBAL HEALTH,
POPULATION HEALTH, NOT SO
FOCUSED ON THE DISEASES.
DOES THAT MAKE SENSE?
THIRTY MINUTES, IT'S IMPOSSIBLE
TO SHARE.
>>THANK YOU.
>>THANK YOU SO MUCH FOR THAT
RICH DISCUSSION.
NOW A QUESTION FOR DR. BAMBS.
DR. BAMBS, YOU MENTIONED WITH
REGARDS TO SMOKING THAT THERE
WAS A DROP IN THE PREVALENCE
WITH SOME OF THE POLICIES,
SPECIFICALLY TOBACCO TAXATION,
ARE THERE REPORTS THAT RESULTED
AFTER THAT DROP IN SMOKING
PREVALENCE?
>>YES, THANK YOU FOR YOUR
QUESTION.
TOBACCO, THE TOBACCO EPIDEMIC IS
PROBABLY THE MOST STUDIED
EPIDEMIC IN THE WHOLE WORLD, IN
CHILE AS WELL, MANY LESSONS
LEARNED IN TERMS OF
IMPLEMENTATION, BUT ALSO IN
TERMS OF THE OUTCOMES, IN TERMS
OF, FOR INSTANCE, WHEN THE NEW
LAW REGULATING SMOKE-FREE PUBLIC
SPACES WAS PASSED, THERE WAS
DECREASE IN THE HOSPITALIZATIONS
FOR MYOCARDIAL INFARCTION, AND
OF COURSE RESPIRATORY DISEASES.
SO, WE HAVE MEASURED THAT IN
SEVERAL OUTCOMES, ALSO WE HAVE
ESTIMATED RISKING THAT CAN BE
AVOIDED BY FURTHER REGULATIONS
BUT STILL WITH ALL THIS ACCESS
WE HAVE A CONSTANT FIGHT AGAINST
TOBACCO IN CHILE AND A LONG WAY
TO HAVE MORE CONTROL.
THANK YOU, APPRECIATE YOUR
ANSWER, GREAT YOU WERE ABLE TO
MEASURE DECREASES IN
HOSPITALIZATIONS AND THEN I
WANTED TO ASK DR. BLOFIELD A
QUESTION.
I KNOW YOU DISCUSSED CASH
TRANSFERS AND THEIR IMPACT ON
DOMESTIC VIOLENCE.
ONE OTHER QUESTION THAT WE HAD
WAS WITH REGARDS TO POLICIES
LOOKING AT SOCIOCULTURAL
ETIOLOGICAL FACTORS OF DOMESTIC
VIOLENCE.
ARE THERE ANY -- YOU MENTIONED
MULTIPLE DIFFERENT POLICIES, BUT
ARE THERE POLICIES THAT INVOLVE
ADDRESSING ROOT CAUSE ISSUES,
LIKE GENDER ROLES, EDUCATION ON
SOME OF THESE VALUES OR FACTORS?
>>YES, CERTAINLY.
WHEN YOU GO INTO THINGS LIKE
EDUCATION, IT CAN BE VERY BROAD,
RIGHT?
NOT EVERYTHING NECESSARILY NEEDS
TO FOCUS ON VIOLENCE PER SE, BUT
JUST IN TERMS OF THE EDUCATION
SYSTEM, PROMOTING, YOU KNOW,
NON-VIOLENT WAYS OF
COMMUNICATING, PROMOTING GENDER
EQUALITY, ET CETERA, ET CETERA.
I MEAN, ALL THOSE FACTORS COME
INTO PLAY, RIGHT?
BUT THERE ARE ALSO MORE
IMMEDIATE PROGRAMS, SOME
INTERESTING PROGRAMS ACTUALLY
THAT -- I MEAN OUR STUDY FOR NOW
IS LIMITED TO THE IMMEDIATE
FIRST RESPONSE, SO THERE ARE
ALSO INSIPIENT PROGRAMS AND
CHILE IS ONE OF THEM WHERE IT'S
MORE PREVALENT TO ADDRESSING
MEN, TO PERPETRATORS, MEN'S
REHABILITATION CENTERS, AND THEY
ARE POPPING UP IN MORE AND MORE
PLACES, THE PROBLEM IS THAT THEY
ARE VERY NOT LETTING MEN WANT TO
GO AND THEY TEND TO DROP OUT,
RIGHT?
IF IT'S ONLY THOSE WILLING TO
GO, THERE'S A HUGE SELECTION
BIAS, ET CETERA, ET CETERA, SO
PROGRAMS ARE NOT AS EFFECTIVE AS
THEY COULD BE.
THERE'S CERTAINLY OTHER PROGRAMS
AS WELL.
OVERALL THE, YEAH, I FOCUS LATIN
AMERICA, NOT AN EXPERT IN THE
U.S. BUT LOOKING AT THE MOST
RECENT WORLD HEALTH ORGANIZATION
REPORT BROUGHT UP STATISTICAL
25%, THE RATES IN THE U.S. ARE
HIGHER, IT'S NOT THAT LAST
INAMERICA IS MORE VIOLENT THAN
THE UNITED STATES, IN LATIN
AMERICA THERE'S HUGE VARIABLE
LEVELS.
EXTREMELY HIGH LEVELS IN
BOLIVIA, RIGHT?
SO, HUGE VARIATION THERE.
ANOTHER INTERESTING THING TO
OBSERVE IN HERE, I'LL TAP MY
COLLEAGUE MARY ALICE ELSEBERG,
WHO COULDN'T JOIN, DID AN
EXCELLENT STUDY IN NICARAGUA IN
1995, AND 20 YEARS LATER, WAS
ABLE TO MEASURE AN ACTUAL
DECREASE IN LEVELS OF VIOLENTS
WHICH WE JUST DON'T HAVE THIS
KIND OF COMPARATIVE DATA.
ACROSS NATIONAL DATA AND DATA
THAT'S RELIABLE AND WE CAN SAY
THIS IS A TREND, NOT JUST
DIFFERENCE REPORTING, FOR
EXAMPLE, THE WAY WE ASK THE
QUESTION, ET CETERA, AND THERE
SEEMS TO BE -- THIS IS SOMETHING
VERY POSITIVE AND OVERALL
DECREASE IN LEVELS OF VIOLENCE,
JUSTIFICATION THAT VIOLENCE IS
OKAY, OVER THE LAST COUPLE
DECADES.
WE CAN TALK ABOUT FACTORS THAT
ARE CAUGHTING THAT.
THERE'S A LOT OF SOCIAL,
CULTURAL, POLITICAL FACTORS ON
THAT ISSUE.
AND SO ALL OF THE CULTURE STEREO
THIS IS OF MACHISMO EXIST BUT
THERE'S A LOT OF CHANGE AND
VARIATION GOING ON.
>>THANK YOU SO MUCH.
APPRECIATE THE ANSWER TO THE
QUESTION.
ALSO WANTED TO OPEN THE FLOOR TO
ALL THREE PANELISTS TO SEE IF
YOU HAVE QUESTIONS FOR OTHER
PANELISTS BEFORE MOVING TO A FEW
QUESTIONS TO OPEN UP THE FLOOR
TO EVERYONE.
>>I HAVE A COMMENT, BRINGING
BACK THE ONE HEALTH APPROACH TO
SOLVE -- TO BRING HEALTH TO THE
LIVES, FOR INSTANCE, WHEN WE
THINK ABOUT THE ENVIRONMENT,
HAVING A HEALTHY ENVIRONMENT
ESPECIALLY FOR EXAMPLE OF
OBESITY, IT'S ONE EXAMPLE, IN
ORGANIZATION, TO HAVE PARKS THAT
PROVIDE THE PLACE FOR HUMANS AND
PETS TO WALK, AND THAT SHOWS HOW
JUST A SIMPLE WALK, COMING OUT
OF THIS SEDENTARY LIFE, BESIDES
THE DIET, ALSO IMPORTANT DIET
WHICH COMES WITH THE HEALTHY
PLANS, BUT FOR THE INCREASING
THE EXERCISE, WE NEED TO HAVE A
SAFER NEIGHBORHOOD.
WE NEED TO HAVE PARKS AND EVEN
SHOWS DECREASES OVER BLOOD
PRESSURE, BRINGING THE HEALTH.
SO HOW WE'RE GOING TO BRING THE
ENVIRONMENT INTO THIS ASPECT OF
HEALTH.
SO IT'S A COMMENT, BRING THE
HOLISTIC APPROACH TO HEALTH.
>>DR. BAMBS?
>>YEAH, THANK YOU.
I WOULD LIKE TO COMMENT ON THAT.
CONSIDERING PREVENTION FROM THE
ENVIRONMENT, I THINK IT'S A
VERY, VERY WISE WAY TO REFRESH
THE CONCEPT OF PREVENTION,
PROMOTION OF HEALTH.
IT PUTS EMPHASIS NOT ONLY ON THE
INDIVIDUAL'S KNOWLEDGE AND THEIR
OWN HEALTH BUT STRUCTURAL
MEASURES WHERE WE ALL LIVE AND
WORK AND STUDY.
SO, ONE THING, THE BUILT
ENVIRONMENT, AS CHRISTINA
ALREADY MENTIONED.
BUT AS I MENTIONED IN MY
PRESENTATION, WE NEED TO ALWAYS
REMEMBER THAT THE MARKETING
ENVIRONMENT IS VERY IMPORTANT.
AND ALSO THE PRICES OF THINGS WE
WOULD LIKE TO PROMOTE OR
DISCOURAGE IN THE POPULATION.
SO ALL THOSE ASPECTS, CULTURAL,
SOCIAL NORMS, ARE BUILT FROM THE
EARLY CHILDHOOD, BECAUSE OUR
CHILDREN ARE WATCHING WHAT IS
BEING ADVERTISED TO THEM.
AND IF SOMETHING IS REALLY CHEAP
AND EASY TO GET, SUCH AS THE
ALCOHOL IN CHILE, OF COURSE
TEENS ARE STARTING DRINKING VERY
EARLY AND NOT ONLY DRINKING BUT
BINGE DRINKING, AND I WANT TO
CONNECT THAT WITH IS
PRESENTATION OF MY COLLEAGUE
MERIKE, BECAUSE OF PERHAPS ONE
OF THE FACTORS THAT IS WRITING,
PREVALENCE OF VIOLENCE AMONG
CHILEAN MEN, WE HAVE PREVALENCE
OF ALCOHOL CONSUMPTION REALLY,
REALLY HIGH.
I THINK OVERALL TAKING THE
ENVIRONMENT AS A FRESH POINT TO
UNDERSTAND PROMOTION OF HEALTH
AND PREVENTION AND KEEP
INDIVIDUALS DOING WHAT THEY KNOW
HOW TO DO AND BUT I THINK THAT
WE COULD MAKE A CHANGE IF HAVE
THIS EMPHASIS ON THE CONTEXT.
AND DAILY LIFE CONTEXT, IT'S NOT
THAT YOU NEED TO THINK
PREVENTION AND PROMOTION OF
HEALTH IN TERMS OF A DAILY
LIFESTYLES, AND WHERE WE ARE
EVERY DAY, THAT IS NOT ONLY OUR
RECREATIONAL TIMES, BUT ALSO OUR
EMPLOYMENT, WORKPLACES, AND SO
BUT THE CONTEXT OF ENVIRONMENT I
THINK BRINGS A NEW -- IT'S NOT
NEW BUT WE CAN REFRESH THE
CONCEPT.
THAT'S WHAT I WAS TRYING TO SAY.
THANK YOU.
>>THANK YOU.
NO, A GREAT COMMENT.
DR. BLOFIELDEL.
>>YEAH, LET'S PICK UP ON WHAT
THEY WERE SAYING, IT POINTS TO
INTERCONNECTEDNESS, AND YOU
BROUGHT UP INDEED, I DIDN'T HAVE
TIME TO DISCUSS INDIVIDUAL RISK
FACTORS, ALSO TO THE EARLIER
QUESTION ABOUT KIND OF CULTURAL
PROGRAMS, PREVENTING PERHAPS,
INDIVIDUAL RISK FACTORS, TEND TO
BE LIKE -- FOR BUILT, IN TERMS
OF THE VICTIM AND PERPETRATOR,
EXCESSIVE VOLUME USE, ALSO
SOMETHING THAT YOU CANNOT CHANGE
WESTBOUND AN EASY POLICY FIX, IF
YOU EXPERIENCE VIOLENCE OR
WATCHED YOUR MOTHER BEING
SUBJECTED TO VIOLENCE WHEN YOU
WERE A CHILD, SO IT'S VERY MUCH
AND INTERGENERATIONAL PROBLEM AS
WELL.
LOWER LEVELS OF EDUCATION,
SPECIFICALLY NOT FINISHING HIGH
SCHOOL, THRESHOLD ON BOTH
LEVELS.
AS I MENTIONED ACCESS TO YOUR
OWN INCOME.
BEYOND THAT COME MECHANISMS OF
FIRST RESPONSIVE, BEING ABLE TO
LEAVE YOUR LOCATION, BEING ABLE
TO GUARANTEE YOUR PHYSICAL
SAFETY.
BUT ALL THOSE FACTORS, AND
THAT -- LIKE ALCOHOL USE IS NOT
NECESSARILY INTENDED TO BE --
IT'S NOT INTENDED TO BE AN ACT
OF VIOLENCE POLICY BUT IT HAS
ALL THESE, IT ALL VERY MUCH --
>>IT'S INTERCONNECTED.
>>POINTS TO THE INTERCONNECTED
STRATEGY THAT I MENTIONED.
>>YEAH, NO, ABSOLUTELY.
THOSE ARE GREAT POINTS.
AND WE HAVE A QUESTION HERE FROM
THE AUDIENCE REGARDING THE ROLE
OF RESEARCH ON PUBLIC POLICIES,
AND HOW TO MAKE THAT TRANSLATION
OF RESEARCH FINDINGS INTO
POLICIES, SO ONE QUESTION WOULD
BE WHAT ARE THE CHALLENGES OF
TRANSLATING RESEARCH FINDINGS
INTO POLICY IN LATIN AMERICA,
HOW CAN WE OVERCOME SOME OF
THOSE CHALLENGES IN TRANSLATING
RESEARCH INTO POLICY.
>>MAYBE I CAN START QUICKLY ON
THAT QUESTION.
ONE IMPORTANT POINT IS MEASURING
EFFECTIVENESS, MAKE SURE THAT WE
ALWAYS MEASURE WHAT WE DO.
AND THAT MEANS EFFECTIVENESS.
BUT ALSO POPULATION IMPACT.
SOMETIMES WE CAN HAVE A
CONDUCTED RESEARCH STUDY AND
HAVE THE EFFICACY, SAFETY, AND
EFFECTIVENESS OF AN
INTERVENTION, BUT THEN WE NEVER
CONDUCT THE POPULATION IMPACT
MEASUREMENT ALSO.
AND I THINK THAT NUTRITIONAL AND
LABELING LAW NOW HAS BEEN
CAREFUL IN CHILE TO HAVE THOSE
EVALUATIONS, IN ORDER TO HAVE
EVIDENCE, SOLID EVIDENCE, TO NOT
ONLY FOR OUR COUNTRY BUT FOR
OTHER COUNTRIES IN LATIN AMERICA
AND OTHER COUNTRIES IN GENERAL,
BUT I THINK ONE PERSON KEY
ASPECT IS TO BE VERY CONSISTENT
IN MEASURING WHAT WE DO, OUR
PROTOCOLS, AND HAVE NETWORKS
THAT WE'RE DOING, RIGHT, AND TO
SEE OTHER COLLEAGUES TALKING THE
SAME LANGUAGE, AND THAT OF
COURSE CAN FACILITATE THAT WE
CAN THINK TOGETHER, RESEARCH
QUESTIONS, AND I THINK THAT IS
VERY IMPORTANT.
>>DR. BAMBS, A FOLLOW-UP
QUESTION.
SO I UNDERSTAND THE PRESENCE OF
MEASURING IMPACT BUT HOW DO YOU
MAKE THAT TRANSITION, YOU KNOW,
FROM THE RESEARCH FINDINGS, YOU
HAVE THE RESEARCH STUDY DONE AND
HAVE THE DATA; HOW DO YOU GET
THE DATA TO THE POLICYMAKERS?
>>YEAH, THAT'S A CHALLENGING
THING, NOW, IN MY UNIVERSITY,
FOR EXAMPLE, WE HAVE A NEW GROUP
WORKING SPECIFICALLY ON
MONITORING THE PROJECT AND THE
NEW LAWS THAT ARE BEING
DISCUSSED IN THE NEXT MONTH, IN
OUR CONGRESS, FOR INSTANCE,
RELATED TO HEALTH.
WE DIDN'T HAVE THAT OFFICE.
IT'S SOMETHING REALLY NEW.
NOW WE UNDERSTOOD THAT NEED TO
MOVE FORWARD FROM THE ACADEMIC
ENVIRONMENT AND MOVE TO
CONGRESSMEN AND BE ABLE TO
COMMUNICATE ON MESSAGES IN A
SIMPLE WAY AND USE A LOT OF
IMAGES MORE THAN A LOT OF WORDS
BECAUSE CONGRESS MON --MEN ARE
VERY TIRED, MESSAGE AT 5 P.M. IN
THE AFTERNOON, WE'VE LEARNED HOW
TO COMMUNICATE WITH THEM, AND
ADVOCATE FOR THE IMPORTANT
CHANGES, BUT NOW OUR FOCUS WILL
BE TO MONITORING THOSE LAWS IN
ADVANCE, TO HAVE -- TO PROMOTE
WE MAY HAVE AN ACADEMIC
DISCUSSION WITH OTHER
UNIVERSITIES, TRYING TO FIND AND
GO WITH PROPOSALS THAT TRY TO
PUSH AND ADVOCATE WITH THE BEST
MESSAGES WE COULD BUILD
TOGETHER.
>>GREAT POINT, ONE THING WE'VE
SEEN HERE IN THE U.S. WITH THE
WHOLE COVID PANDEMIC, THE
IMPORTANCE AS PUBLIC HEALTH
OFFICIALS, DOCTORS AND
SCIENTISTS, THE ROLE OF HEALTH
COMMUNICATION AND BRINGING IT
DOWN TO A LEVEL THAT THE
POPULATION UNDERSTANDS.
WE'VE REALIZED HOW IMPORTANT
THAT IS AND I THINK IT'S
IMPORTANT TO CONTINUE TO LEARN
THAT, YOU KNOW, AS PEOPLE WHO
SPECIALIZE IN PUBLIC HEALTH AND
MEDICINE.
ONE OTHER QUESTION THAT WE HAVE
FROM THE AUDIENCE, WITH REGARDS
TO POTENTIAL COLLABORATION
BETWEEN RESEARCHERS IN LATIN
AMERICA AND THOSE STUDYING
HISPANIC AND LATINO POPULATIONS
IN THE U.S., DO YOU HAVE ANY
IDEAS FOR WHAT MIGHT BE GOOD
AREAS OF COLLABORATION BETWEEN
LATIN AMERICA AND THE U.S.?
OR WAYS WHERE WE CAN HARNESS THE
FACT THAT WE'RE BOTH STUDYING
HISPANIC/LATINO POPULATIONS AND
THINGS WE COULD LEARN FROM ONE
ANOTHER.
>>I CAN SHARE SOME EXPERIENCES
THAT YOU ARE HAVING IN THIS
IMPLEMENTATION OF PARTNERSHIPS.
FIRST OF ALL, JUST TO CLARIFY
AND CONTINUE ALSO THE IMPORTANCE
OF METRICS, THAT IT'S IMPORTANT
AS WE HAVE DISCUSSED, IT'S ALSO
UNDERSTANDING THE TIME.
A TIME FOR RESEARCHER IS
DIFFERENT THAN A TIME FOR A
CLINICIAN AND A TIME FOR THE
MUSE.
THE RESEARCHER IS NOT GOING TO
TELL YOU SOMETHING THEY DON'T
KNOW FOR SURE AND HOW TO PUT
THAT IN THE POLICIES.
SO THIS IS A VERY COMPLEX, TAKES
US TEN YEARS TO PROVE SOMETHING,
IMMEDIATELY WE NEED AN ANSWER
FOR THE CLINICIAN ASPECT, I NEED
TO HEAR RIGHT NOW, MY PATIENT.
ALSO WHAT ARE YOU GOING TO TELL
THE NEWS TO BRING ANOTHER
CHALLENGING FOR THE SCIENCE TO
THE PUBLIC POLICIES.
IN TERMS OF YOUR POTENTIAL AREAS
OF COLLABORATION, TODAY WE'RE
ALL HERE, BRINGING DIFFERENT --
ONLY THE THREE OF US HERE, OR
FOUR, DIFFERENT PROFESSIONS,
LISTENING.
I DON'T KNOW WHAT SHE'S TALK
ABOUT THE ECONOMICS AREA, BUT I
NEED TO LEARN AND LISTEN TO AND
BRING YOUR DIFFERENCES SO I
THINK WHAT IS THE POTENTIAL
AREAS OF COLLABORATION, IT IS
HAVING FUNDINGS OR SUSTAINABLE
WAY TO CONTINUE ALL DISCOVERIES
OR RESEARCH OR STUDIES SO IT'S
VERY IMPORTANT, THE FINANCIAL
SUPPORT, AND ALSO PERHAPS TO
BRING MORE THIS HOLISTIC
APPROACH, THE MORE DIVERSE
VIEWS, DIFFERENT VIEWS, TO GET
TO A SOLUTION.
I THINK WE'RE DOING THIS.
WHAT I WANTED TO SHARE OUR
EXPERIENCE RIGHT NOW, IT IS
UNDERSTANDING CULTURE
DIFFERENCES, UNDERSTANDING
POLITICAL DIFFERENCES AS WELL,
AND UNDERSTANDING PERHAPS EVEN
DIFFERENT APPROACHES.
IN BRINGING LIKE WHATEVER WE
LEARNED IN LATIN AMERICAN, THAT
INCLUSION, LET'S PUT IT THIS
WAY, IMCOLLUSION THAT --
INCLUSION THAT SOMETHING'S BEEN
DISCUSSION SO WE DON'T NEED TO
REPEAT BUT SAY WE ARE GOING TO
IMPLEMENT IN BRAZIL AN CHILE.
ASK FIRST HAVE YOU GUYS DONE
THIS BEFORE?
AND THEY DID.
NO, THE OPPOSITE, WE ALREADY DO
THAT, WHAT ARE YOU DOING UP IN
THERE.
YOU'RE STILL WRITING LAWS AND
REGULATIONS.
BRING EACH OTHER DIFFERENCES,
AND I HOPE WE'RE DOING THIS
ALREADY BUT IT'S TO SHARE A
LITTLE BIT MORE, TO LEARN, TO
LISTEN, AND I'LL BRING NOW
INDIGENOUS POPULATIONS.
WE CAN'T JUST GO THERE.
YES, I WANT TO SAVE THE AMAZON
FOREST, BUT I CAN'T JUST GO AND
SAY WE'RE IMPLEMENTING THIS
PUBLIC POLICY, I'M FROM THE
GOVERNMENT, WE CAN'T THAT.
GOES FOR CIVILIZATIONS, WE HAVE
TO LISTEN, TO COME TOGETHER AND
SEE WHAT THEY CAN BRING TO US
PROFESSIONALS IN ACADEMIA,
RESEARCHERS AND PHYSICIANS, AND
FIRST LISTEN TO THEIR
EXPERIENCES.
I THINK THAT'S WHAT I WOULD
LIKE, AREAS OF COLLABORATION.
INCLUSION OF DIFFERENT
EXPERIENCES.
>>THANK YOU SO MUCH.
I APPRECIATE YOUR ANSWER.
UNFORTUNATELY WE'RE AT TIME
RIGHT NOW BUT OHIO VALLEY WE CAN
CONTINUE THE CONVERSATION IN THE
FUTURE.
RIGHT NOW WE'RE GOING TO BE
MOVING TO DR. JARRETT JOHNSON,
MODERATING OUR NEXT SESSION.
THANK YOU SUCH.
>>GREETINGS.
I'M DR. JARRETT JOHNSON, PROGRAM
OFFICIAL AT THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES.
MODERATOR FOR TODAY'S SESSION ON
THE CONCEPTUALIZATION OF RACE
AND AT THE TIME, THE FIRST
PRESENTATION IS FROM DR. EDWARD
TELLES, FORD BY DR. ARACHU
CASTRO, WE'LL GO LIVE FOR Q&A.
ENJOY THE PRESENTATIONS.
>>I'M EDWARD TELLES, UC-IRVINE.
MY TALK TODAY IS ETHNORACIAL
CLASS IF I TAIGS --
CLASSIFICATION AND
IMPLEMENTATION, BACKGROUND
PARTICULARLY REGARDING RACE AND
ETHNICITY.
COLONIZATION BY SPANISH AND
PORTUGUESE, INDEPENDENCE OF TO
COUNTRIES IN THE 19th CENTURY,
THROUGHOUT THIS TIME UNTIL
INDEPENDENCE AND SOMETIMES
AFTER, THEY HAD SLAVERY BASED ON
AFRICAN LABOR, DECIMATION.
BY THE EARLY 20th CENTURY,
ELITES INTENT ON UNIFYING NEW
NATIONS, OFTEN DOWNPLAYED OR
IGNORED THE AFRICAN PART AND
EMPHASIZED THE SIDE BETWEEN
EUROPEANS AND INDIGENOUS.
MESTIZAJE WAS FACILITATED BY
IMBALANCE.
YOU HEAR THE SAME WITH SPANISH
AND PORTUGUESE, A CULTURAL
ADVANTAGE, THAT THEY WERE ABLE
TO BLEND WITH NON-WHITE PEOPLE,
BUT THE IMBALANCE OF THE SEX
RATIO, THE FACT THEY WERE MOSTLY
MEN AMONG THE SPANISH AND
PORTUGUESE COLONIZERS EXPLAINS A
LOT.
THEY STARTED NON-WHITE WOMEN,
THEY HAD CHILDREN FROM THOSE,
OFTEN ENCOUNTERS WERE
UNCONSENSUAL AND OFTEN VIOLENT.
SOMETHING WE FORGET ABOUT.
POINT 4, THE MESTIZAJE
NARRATIVES WERE USED TO DENY
RACISM, PROMOTE MORAL
SUPERIORITY OVER THE U.S.,
BECAME WIDELY ACCEPTED,
ESPECIALLY STRONG IN BRAZIL AND
MEXICO.
BRAZIL AND MEXICO HAD THEIR OWN
VERSIONS OF MESTIZAJE, THESE
BECAME NARRATIVES THEY TAUGHT
AND THAT WERE LEARNED AND BECAME
RACIAL COMMON COMMON -- THERE
WERE NO ANTI-MISSCEGENATION
LAWS.
RATHER THAN BECOMING LEGAL
BECAME A PURIST-BASED, FLUID,
PEOPLE DIDN'T NECESSARILY
IDENTIFY WITH ONE CATEGORY OR
THE OTHER, CUSTOMARY, NOT LEGAL,
WITH MIXED RACE CATEGORIES.
THIS IS WHY COLOR MAY BE A
BETTER INDICATOR BUT I'LL GET TO
THAT LATER.
HOWEVER, LIKE THE U.S., RACIAL
DISCRIMINATION AN INEQUALITY IN
LATIN AMERICA WERE AND ARE
PRONOUNCED THROUGHOUT THE
REGION.
THE LAST POINT MOST LATIN
AMERICAN COUNTRIES RECENTLY
BEGAN COLLECTING ETHNORACIAL
DATA AMONG MUCH GROWING
PRESSURE.
EXAMPLE FOR THE FIRST TIME IN
THE MEXICAN CENSUS COLLECTS DATA
FOR ITS BLACK POPULATION.
OKAY.
HERE IS A TABLE SHOWING
INDIGENOUS POPULATION BASED ON
SEVERAL CENSUSES, MOST BASED ON
CENSUS, SO HAVE YOU OFFICIAL
COUNTS, SOME BASED ON SURVEYS.
YOU CAN PICK YOUR FAVORITE
COUNTRY AND SEE THE NUMBERS.
THE DISTRIBUTION OF BLACK AND
INDIGENOUS POPULATION IS VERY
DIFFERENT ACROSS THE REGION.
THIS IS THE MAIN POINT, RACIAL
CLASSIFICATION AND CENSUS AND
SURVEYS IS MEASURED IN MULTIPLE
WAYS, DEPENDS ON CATEGORIES USED
AND WHETHER RESPONDENTS OR
INTERVIEWERS DO CLASSIFYING.
NOW, THERE WERE AS MANY WAYS TO
ASK THE QUESTION ABOUT RACE AND
ETHNICITY AND CATEGORIES TO USE
AS THERE ARE COUNTRIES IN THE
REGION.
SO, THIS HAS IMPLICATIONED FOR A
COUNT OF THE POPULATION, HOW
MANY PEOPLE THERE ARE AND
INEQUALITY, OF COURSE THIS IS
DONE POLITICALLY AND, YOU KNOW,
DEPENDS HOW CENSUS OR
STATISTICAL AGENCY WORKS IN EACH
OF THESE COUNTRIES.
I'M GOING TO FOCUS ON TWO
MEASURES OR SYSTEMS OF RACE.
THE FIRST ONE IS TRADITIONAL WAY
IT'S USED IN CENSUS TO COLLECT
RACE AND ETHNICITY BASED ON
SELF-IDENTIFICATION.
IN CATEGORIES, OKAY, ARE YOU
WHITE, MESTIZO, MULATTO, ET
CETERA.
THERE'S NOT A STRONG SENSE OF
HOW PEOPLE IDENTIFY IN THESE
RACE OR ETHNICITY CATEGORIES
RACE AND ETHNICITY IS NOT
CENTRAL TO NOTION OF SELF AMONG
MOST LATIN AMERICANS.
ANOTHER MEASURE OR SYSTEM OF
RACE BASED ON SKIN COLOR,
CONTINUUM FROM LIGHT TO DARK,
11-POINT SCALE, 1 IS LIGHTEST,
AND 11 THE DARKEST.
IN 2010 IT WAS BASED ON
INTERVIEWER IDENTIFIED THE RACE
OF THE RESPONDENTS.
PEOPLE OFTEN ARE AWARE BUT DON'T
TALK ABOUT COLOR DIFFERENCES
MUCH.
LAST POINT IS IT CUTS THROUGH
MESTIZO UNIFORMITY.
THAT CAN INCLUDE PEOPLE WITH
VERY LIGHT SKIN COLOR AS WELL AS
PEOPLE WITH VERY DARK SKIN COLOR
AND THIS CUTS THROUGH THAT WHOLE
IDEA OF WE ARE ALL MESTIZO, THIS
NARRATIVE.
LET ME SHOW HOW THAT HAPPENS.
WHAT I'M GOING TO DO IS SHOW
YEARS OF SCHOOLING, AVERAGE
YEARS OF SCHOOLING FOR PEOPLE IN
DIFFERENT RACIAL CATEGORIES AND
BY COLOR.
IF WE LOOK AT BOLIVIA,
GUATEMALA, MEXICO, THEY CONDUCT
DATA ON INDIGENOUS POPULATION,
THE REST IS NON-INDIGENOUS.
IN BOLIVIA, GUATEMALA, MEXICO,
INDIGENOUS POPULATION HAS FEWER
YEARS OR LOWER YEARS OF
SCHOOLING THAN NON-INDIGENOUS
POPULATION, MOSTLY WHITE AND
MESTIZO, IN COLOMBIA THERE'S NOT
A CLEAR HIERARCHY.
FOR REMAINING COUNTRIES IT
REALLY GETS MURKY WITH EXCEPTION
OF BRAZIL, THERE'S RACIAL
HIERARCHY IN THE DIRECTION YOU
WOULD EXPECT BUT IN THE
DOMINICAN REPUBLIC, ECUADOR,
PERU, IT'S NOT -- THERE'S NOT A
RACIAL HIERARCHY.
FOR EXAMPLE, IN THE DOMINICAN
REPUBLIC MULATO IN 2010, WHEN
THE DATA WAS SELECTED, THEY HAD
THE HIGHEST LEVEL OF EDUCATION
BUT THAT'S A QUESTION OF
SELECTIVITY WE MIGHT DISCUSS IN
THE QUESTION AND ANSWER PERIOD.
YEARS OF SCHOOLING BY COLOR,
THEN THE RACIAL HIERARCHY
BECOMES CLEAR.
THIS REFLECTS THE WAY MANY LATIN
AMERICANS UNDERSTAND THE RACIAL
HIERARCHY, DESPITE HOW THEY
SELF-IDENTIFY, WHEN PEOPLE ARE
CATEGORIZING SKIN LORE - COLOR
COLOR ARE HIGHEST YEARS OF
SCHOOL, DARKEST BOLIVIANS HAVE 8
1/2 YEARS OF SCHOOLING, MIDDLE
COLORS HAVE MIDDLE LEVELS OF
SCHOOLING, SAME THING HAPPENS
FOR EVERY SINGLE COUNTRY.
IMPLICATIONS OF COURSE ARE SKIN
COLOR IS PROBABLY A BETTER OR AT
LEAST A DIFFERENT WAY OF
COLLECTING ETHNORACIAL DATA.
WHAT ARE IMPLICATIONS FOR U.S.
LATINOS OR HISPANICS?
THE U.S. CENSUS HAS A SEPARATE
CATEGORY FOR LATINOS, AND THE
CATEGORY -- THERE'S TWO
QUESTIONS IN THE U.S. CENSUS,
LAST FIVE CENSUSES OF THE UNITED
STATES, LATINOS INCLUDED AS
SEPARATE RACE, BUT EITHER OF
THOSE SYSTEMS OF CLASSIFICATION
HAVE PROBLEMS.
THERE'S A QUESTION THAT REMAINS
HOW DO YOU CAPTURE RACE OR COLOR
VARIATION AMONG LATINOS, THE
OPTION TO ANSWER MORE THAN ONE
QUESTION OR RACE RESPONSE
SEPARATE FROM HISPANIC RESPONSE
DOESN'T ADEQUATELY CAPTURE THIS
BECAUSE OF THE NATURE OF LATINO
RACIAL CLASSIFICATION.
SO A LOT OF PEOPLE DON'T ANSWER
MORE THAN -- EVEN THOUGH THEY
ARE ALLOWED TO ANSWER MORE THAN
ONE CATEGORY THEY DON'T, AND
WHEN YOU SEPARATE THESE OF THE
HISPANIC FROM THE RACE QUESTION,
IT'S STILL A PROBLEM BECAUSE ONE
HALF IDENTIFIES WHITE, MOST OF
THE OTHER HALF CLASSIFIES AS
SOME OTHER RACE WHICH DOESN'T
TELL YOU ANYTHING.
OKAY.
NOW, WHY IS THAT?
FOR IMMIGRANTS THERE'S AN ISSUE
OF FLUIDITY AND LOW SALIENCE OF
RACIAL SELF-IDENTIFICATION, IT'S
NOT CLEAR WHAT CATEGORY YOU'RE
SUPPOSED TO RESPOND TO, U.S.
CATEGORIES, U.S. WAYS OF
RESPONDING ARE DIFFERENT THAN
LATIN AMERICAN ONES.
IN THE UNITED STATES, ESPECIALLY
FOR U.S.-BORN LATINOS THERE'S
THE IDEA LATINOS HAVE ONE RACE,
AND HISPANIC IS A SUFFICIENT
DESCRIPTOR, AND NO MORE THAN
THAT.
SO I'LL STOP THERE AND I LOOK
FORWARD TO QUESTIONS AND
DISCUSSION IN THE PANEL.
>>IN MANY PARTS OF LATIN
AMERICA INDIGENOUS POPULATIONS
ARE SUBJECT TO WIDESPREAD SOCIAL
EXCLUSION AND DISCRIMINATION,
DENIED RIGHTS, RESOURCES,
SERVICES AVAILABLE TO DOMINANT
GROUPS BASED ON RACIST
PREJUDICIAL TREATMENT, WITH A
SIGNIFICANT NEGATIVE IMPACT ON
MENTAL AND PHYSICAL HEALTH, THAT
RESULTS FROM STRESS RESPONSES.
IN SEGMENTED HEALTH SYSTEMS
OVERWHELMING FROM THE LOWEST
QUINTILES, CLINICAL ENCOUNTERS
BECOMES SITE OF REPRODUCTION OF
UNBALANCED SOCIAL AND GENDER
POWER DYNAMICS BETWEEN PATIENTS
AND CLINICIANS.
UNBALANCED DYNAMICS CAN RESULT
FROM RACIST TREATMENT, IN THIS
CONTEXT THE RESULTING TREATMENT
WHICH TAKES A FORM OF TRIPLE
EXCLUSION AND DISCRIMINATION ON
ACCOUNT OF BEING POOR, DARK
SKINNED, FEMALE, IS
SYSTEMATICALLY EMBEDDED WITHIN
CLINICAL ENCOUNTERS CONTRIBUTING
TO DIFFERENTIAL HEALTH OUTCOMES,
NOT ONLY AS A STRESSOR BUT AS A
RESULT OF LACK OF MECHANISMS TO
THE POPULATION, WITHHOLDING OF
TIMELY AND QUALITY CARE OR
OUTRIGHT NEGLECTS.
ALL OF WHICH PEOPLE-CENTERED
HUMAN RIGHTS BASED APPROACHES.
ALONG WITH MY TEAM AT THE
COLLABORATIVE GROUP FOR HEALTH
EQUITY IN LATIN AMERICA, AT
TULANE UNIVERSITY, WE HAVE
CONDUCTED A NUMBER OF STUDIES ON
TREATMENT, DISCRIMINATION,
VIOLENCE IN LATIN AMERICAN
HEALTH CARE SETTINGS.
FIRST, WE CONDUCTED A REVIEW OF
THE DISCRIMINATION AGAINST
INDIGENOUS WOMEN.
WE FOUND THAT DISCRIMINATION AND
MISTREATMENT OF TREATMENT ARE
WIDESPREAD, THEY ARE CHIEF
BARRIERS THAT PREVENT WOMEN OF
ETHNIC MINORITIES ACCESSING
HEALTH SERVICE AND CAN MANIFEST
NUMEROUS CLINICAL PRACTICES.
ONE, VERBAL ABUSE.
TWO, POOR RAPPORT WITH HIM.
THREE SOCIAL CULT CALLETS
DISCRIMINATION, FOUR PHYSICAL
ABEES, FIVE FAILURE TO MEET
PROFESSIONAL STANDARDS OF CARE,
AND SIX HEALTH SYSTEMS
CONDITIONS.
THERE WERE MANY EXAMPLES IN
WHICH WOMEN WHO HAVE BEEN
DEHUMANIZED IN CHILD BIRTH
REFRAIN FROM SEEKING CARE IN THE
FUTURE, FOUND REPORTS OF WOMEN
FEELING SHAME AND BEING TREATED
AS MORALLY AND INTELLECTUALLY
INFERIOR BY LOCAL HEALTH
PERSONNEL.
SIMILAR EXPERIENCES OF SHAME
REPORTED IN COSTA RICA, AND
PERUVIAN WOMEN SEEKING CARE IN
CHILE.
IN CHILE CLINICIANS WERE NOT
LIKELY TO SUPPORT THE
DEVELOPMENT AND ADVOCACY OF
POLICIES TO MANDATE
INTERCULTURAL CARE PRACTICES IF
THEY ARE VIEWED AS UNNECESSARY
OR IF THEY DEEMED INDIGENOUS
HEALTH AS UNWORTHY OF SPECIAL
INITIATIVES.
AMONG THE YACAPANI AREA, A THIRD
OF WOMEN IN A STUDY CITED FEAR
OF MISTREATMENT BY STAFF AS A
KEY DETERRENT TO SEEKING MEDICAL
CARE.
IN PERU THE PERCEIVED LOW
QUALITY OF SERVICES DISCOURAGED
INDIGENOUS WOMEN FROM SEEKING
CARE.
IN GUATEMALA SOCIAL EXCLUSION OF
IN INDIGENOUS, STUDIES SHOWED
MAYAN WOMEN CHOOSE TO GIVE BIRTH
AT HOME, EXPERIENCING CULTURALLY
INAPPROPRIATE TREATMENT.
IN COLOMBIA INEQUITIES HAVE BEEN
DESCRIBED AS PRODUCT OF BROADER
SOCIAL AND STRUCTURAL PATTERNS
OF EXCLUSION FOR DESCENDANTS AND
OTHER MINORITIES.
WITH MEMBERS, WE HAVE CONDUCTED
FIELD WORK IN THE DOMINICAN
REPUBLIC AS PART OF THE WOMEN TO
THE CENTER PROJECT.
LIKE MOST OF THE DOMINICAN
POPULATION, WOMEN WHO DELIVER IN
PUBLIC HOSPITALS ARE
OVERWHELMINGLY OF DESCENDANT.
COLONIAL PATH EMPHASIZES WHITE
SPANISH ORIGIN AND DENIAL OF THE
BLACK AFRICAN HERITAGE IN
COMPLEX ATTEMPT TO DIFFERENTIATE
THEMSELVES FROM THE HAITIAN
POPULATION WITH WHOM THEY SHARE
THE ISLAND OF HISPANOLIA AND
CENTURIES OF HISTORY.
MISTREATMENT IS BASED NOT ONLY
ON THE LARGE SOCIOECONOMIC
EDUCATIONAL AND GENDER DISTANCES
THAT EXIST BETWEEN CARE
PROVIDERS AND FEMALE PATIENTS
WHO LIVE WITH MANY SOCIOECONOMIC
DEPRIVATIONS BUT ABOUT RACE IS
PREJUDICIAL TREATMENT ACCORDING
TO THIS THOSE OF HIGHER POSITION
IDENTIFY WITH THE WHITE
COLONIALIST IDENTITY, ABOVE THE
BLACKNESS WHOSE RIGHTS CONTINUE
TO BE INFRINGED.
IN 2015 WE INTERVIEWED WOMEN
AFTER THEY WERE DISCHARGED AFTER
GIVING BIRTH INTO PUBLIC
MATERNITY HOSPITALS IN THE
DOMINICAN REPUBLIC, WE FOUND
THAT MOST WOMEN WHO EXPERIENCED
OBSTETRIC VIOLENCE TALKED ABOUT
IT UNEVENTFULLY, THEY ACCEPTED
THE CARE EXPERIENCE.
THEY MAY HAVE ALSO NORMALIZED
MISTREATMENT AS YET ANOTHER
MANIFESTATION OF THE PERSISTENT
RACISM, SEXISM, CLASSISM THAT
THEY EXPERIENCE IN EVERYDAY
LIFE.
WE HAVE IDENTIFIED THIS AS
ADAPTIVE PREFERENCE OF WOMEN,
WHO MAY DOWNPLAY NEGATIVE
EXPERIENCES AT THE HOSPITAL, AND
ACCEPT OBSTETRIC VIOLENCE AS
PARTS OF ROUTINE CARE BECAUSE
THEY DO NOT HAVE THE OPTION TO
SEEK CARE ELSEWHERE.
THIS NEGATIVE INTERACTION
PROMOTES UNEQUAL POWER DYNAMIC
BETWEEN WOMEN AND HOSPITAL
PERSONNEL, AND THEY COMPEL WOMEN
TO ACCEPT PASSIVE ROLE IN BIRTH
EXPERIENCES WITHOUT ABILITY OF
GAINING ANY CONTROL.
IN 2019 WE CONDUCTED
OBSERVATIONAL STUDY WITH
STATISTICAL REPRESENTATIVE
SAMPLE OF 275 BIRTHS IN TWO
PUBLIC DOMINICAN HOSPITALS, 117
INCIDENTS OF VERBAL VIOLENCE, 24
OF PHYSICAL VIOLENCE, 25% OF
THOSE GIVING BIRTH WERE MINORS,
THE MOST FREQUENT FORMS OF
VERBAL VIOLENCE INCLUDED THE
PREGNANT WOMEN OR GIRL RECEIVED
NEGATIVE COMMENTS ABOUT HER
ETHNICITY, SKIN COLOR, OR OTHER
PHYSICAL CHARACTERISTICS, 23% OF
WOMEN AND GIRLS IN ONE HOSPITAL
AND 7% IN THE OTHER.
WAS SCOLDED OR BLAMED FOR HER OR
HER NEWBORN'S HEALTH.
WAS YELLED AT, MADE FUN OF, OR
WAS CALLED NAMES.
AND WAS THREATENED WITH PHYSICAL
VIOLENCE, USE OF PROCEDURE OR
FAILURE TO CARE FOR THE NEWBORN.
THE MOST FREQUENT FORMS OF
PHYSICAL VIOLENCE INCLUDED THAT
THE PREGNANT WOMEN OR GIRL WERE
PINCHED, GAGGED, PRESSED AGAINST
THE BED WITH FORCE, OR SLAPPED,
BEATEN, PRESSED HARD ON HER
ABDOMEN.
ALSO IN 2019, TO UNDERSTAND
DOCTORS AND NURSES PER
PERSPECTIVES FOR JUSTIFICATION
CONDUCTED INTERVIEWS ACROSS
HOSPITALS, STAFFER EXPLAINED
NEGATIVE PATIENT PROVIDER
RELATIONSHIPS, MISTREATMENT AND
VIOLENCE WERE A RESULT OF WOMEN
NOT COLLABORATING WITH CARE TEAM
OR COMPLYING WITH INSTRUCTIONS
AND ORDERS.
SOME BLAMED WOMEN FOR BEING
VIOLENT AND AGGRESSIVE DURING
LABOR OR BLAME WOMEN FOR
INABILITY TO COMPLY.
MANY HEALTH CARE PROVIDERS ALSO
DESCRIBED WOMEN'S NON-COME
COMPLIANCE AS A SOURCE OF
FRUSTRATION.
SOMETIMES BECAUSE OF LANGUAGE
BARRIER.
NON-COMPLIANCE AND AGGRESSION
ATTRIBUTED TO WOMEN WITH CERTAIN
SOCIODEMOGRAPHIC
CHARACTERISTICS, SUCH AS
EDUCATION, AGE, PARITY OR BEING
HAITIAN.
AS ONE FEMALE OB/GYN DESCRIBED,
A GOOD RELATIONSHIP COULD BE
WHEN THE PATIENT SPEAKS THE SAME
LANGUAGE, THAT THE PATIENT IS
INTERESTED IN HELPING IN
EVERYTHING THAT THE DOCTOR SAYS.
THE SAME LANGUAGE, AS YOU WILL
LEARN ALMOST ALL HAITIAN
PATIENTS DO NOT SPEAK SPANISH,
THEY HAVE A DIFFERENT MENTALITY,
MANY TIMES WE INDICATE AN
ANALYSIS SONOGRAPHY FOR FREE AND
MANY TIMES THEY DO NOT DO IT.
A PATIENT WHO CARES MORE ABOUT
HER CHECKUPS WOULD BE GOOD, ONE
WHERE YOU INDICATE VITAMINS,
SOME TEST, SHE MEETS ALL THE
REQUIREMENTS.
HERE THAT IS NOT THE CASE.
HERE IT IS VERY DIFFICULT.
FIRST DIFFERENCE IN LANGUAGE,
SECOND THAT THEY DO THEIR PART.
OF COURSE THEY WERE NOT
INCLUDING AT ALL THE
SOCIOECONOMIC CONTEXT IN WHICH A
LOT OF THESE PEOPLE LIVE, WHICH
IS OFTENTIMES POVERTY, AND EVEN
EXTREME POVERTY.
OTHER HEALTH CARE PROVIDERS AND
STAFF SAID ALTHOUGH LACK OF
COLLABORATION OR COMPLIANCE WAS
AN IMPORTANT CAUSE OF
MISTREATMENTS CLINICIANS WERE
RESPONSIBLE FOR FOSTERING A
POSITIVE RELATIONSHIP WITH THEIR
PATIENTS AND CREATING AN
ENVIRONMENT IN WHICH WOMEN TRUST
PROVIDERS AND FEEL SAFE DURING
LABOR.
WHEN CONNECTING WITH THE PATIENT
FAILS, SOME CLINICIANS TURN TO
PHYSICAL AND VERBAL ABUSE TO
FORCE PATIENTS TO COMPLY DURING
CHILD BIRTH.
SOME CLINICIAN ALSO DESCRIBE THE
WOMEN'S LACK OF COMPLIANCE AS
SOURCE OF FRUSTRATION AND OTHERS
EXPLAIN THE USE OF FORCE OR
OTHER FORMS OF MISTREATMENT WHEN
WOMEN DO NOT COOPERATE WAS NOT
MERELY AN ACT OF FRUSTRATION BUT
A NECESSARY ACTION TO SAVE THE
WOMAN AND HER CHILD.
THE EFFECTS OF MISTREATMENT
DISCRIMINATION AND OTHER FORMS
OF OBSTETRIC VIOLENCE WITH
FINANCIAL BARRIERS AFFECT HEALTH
CARE UTILIZATION AMONG WOMEN OF
ETHNICITY MINORITIES WHICH CAN
RESULT IN DIFFERENTIAL HEALTH
OUTCOMES.
DISCRIMINATION CAN DETER
INDIGENOUS FROM PSYCHING MEDICAL
CARE IN THE FIRST PLACE.
WHEN THEY DO SEEK CARE WOMEN OF
ETHNIC MINORITIES MAY BE MORE
VULNERABLE THAN OTHER WOMEN TO
RECEIVING SUBSTANDARD QUALITY OF
CARE OR BEING THE SUBJECTED TO
LONGER DELAYS.
EVEN THOUGH UNDERSTAFFING
MEDICATION SHORTAGES OUTDATED OR
UNREPAIRED MEDICAL EQUIPMENT,
LACK OF ADHERENCE TO PROTOCOLS
AND WEAK SYSTEMS COMPROMISE
QUALITY OF CARE REGARDLESS OF
ETHNICITY, DISCRIMINATION IN THE
HEALTH CARE SETTING IS A DRIVER
OF INEQUITABLE HEALTH OUTCOMES.
EXPLAINING THE SUFFERING OF
WOMEN WILL NOT ON ITS OWN
PREVENT RACISM OR OBSTETRIC
VIOLENCE.
HOWEVER, THE REALIZATION OF
THESE ISSUES OFFERS TWO KEY
BENEFITS, FIRST CONTRIBUTES TO
ADVOCACY FOR THE ADOPTION OF
HUMAN RIGHTS BASED APPROACHES
THAT PROTECT WOMEN IN PREGNANCY
AND CHILD BIRTH WHEN NONE EXIST.
SECOND, IT CONTRIBUTES TO THE
MONITORING AND DOCUMENTATION OF
HUMAN RIGHTS STANDARDS IN HEALTH
SYSTEMS TO PREVENT OBSTETRIC
VIOLENCE AND THE CONSEQUENCES OF
RACISM.
BY STUDYING THE ASSOCIATIONS
AMONG OBSTETRIC VIOLENCE, AND
INEQUITY IN THE RIGHT TO HEALTH,
WE AIM TO DISPEL THE MYTH
VIOLENCE IN HEALTH CARE SETTING
IS UNEVENTFUL.
>>GREETINGS, EVERYONE.
WE'RE NOW LIVE FOR OUR Q&A.
I'M DR. JARRETT JOHNSON, YOUR
SESSION MODERATOR.
FIRST, LET ME THANK YOU FOR YOUR
BRIEF PRESENTATIONS COVERING
HISTORICAL CONTEXT IN THE
DOMINICAN REPUBLIC.
THIS IS A SENSITIVE BUT TIMELY
TOPIC AND WANTED PRESENTATION TO
BE SHORT, TO ALLOW FOR AMPLE
DISCUSSION.
WE'RE A LITTLE BIT OVER TIME BUT
WE'LL TRY TO DO OUR BEST.
AGAIN, THANK YOU TO OUR
PANELISTS.
NOW FOR MY FIRST QUESTION, RACE
IS A SOCIOPOLITICAL CONSTRUCT,
WITH REAL WORLD EFFECTS FOR
THOSE THAT FACE DISCRIMINATION,
THOSE OF DARKER SKIN COLOR AS
SEEN IN BOTH PRESENTATIONS IN
THE LATIN AMERICAN CONTEXT.
SO, ARE THERE ANY CURRENT
INTERVENTIONS OR TOOLS YOU CAN
DISCUSS THAT ADDRESS THIS
PERVASIVE PROBLEM?
WHO WANTS TO GO FIRST?
>>I'M NOT A HEALTH RESEARCHER,
I I WANT TO MAKE THAT CLEAR.
BUT I TRIED TO MAKE THE POINT IN
THE TEN MINUTES I HAD WAS ABOUT
DATA.
THAT'S WHERE MY INTERVENTION IS,
ABOUT DATA, WE NEED REALLY GOOD
DATA TO UNDERSTAND THIS.
AND THE ONE QUESTION OR
GETTING -- CAPTURING DATA
WHETHER SOMEBODY IS LATINO OR
NOT IS IMPORTANT BUT NOT ENOUGH.
IN HEALTH YOU HAVE ISSUES OF
HEALTH CARE BUT HEALTH ITSELF,
AND I CAN IMAGINE THAT STRESS
LEVELS MAY BE VERY DIFFERENT,
FOR EXAMPLE, AMONG PEOPLE OF
DIFFERENT SKIN COLORS OR THEY
APPEAR MORE AFRICAN OR
INDIGENOUS, AND SO I THINK IN
THESE HEALTH SURVEYS IN THE
LATIN AMERICAN CASE HAVE BEEN
VERY -- IT'S VERY NEW THEY
COLLECT RACE DATA, AND NOT IN
ALL THE COUNTRIES, AND IN THE
U.S. I DON'T KNOW THAT THEY
COLLECT RACE, DETAILED RACE
DATA.
I IMAGINE YOU COULD DO THIS WITH
A BATTERY OF QUESTIONS, FOR
EXAMPLE, TO REALLY UNDERSTAND
THE DETAILS ABOUT APPEARANCE AND
HOW PEOPLE THINK ABOUT
THEMSELVES RACIALLY.
>>DR. CASTRO?
>>THERE HAVE BEEN SOME EFFORTS
UNDERSTOOD THE UMBRELLA OF
INTERCULTURAL CARE AND SOME HAVE
BEEN LED BY THE PAN AMERICAN
HEALTH ORGANIZATION, UNICEF,
THEY HAVE DIFFERENT
METHODOLOGIES, AND THOSE HAVE
BEEN MOSTLY REENTERED TOWARDS
INDIGENOUS COMMUNITIES, THERE
ARE SOME SUCCESS STORIES.
THERE'S A RECENT ONE COMING FROM
PERU, BECAUSE RACISM IS SO
PERVASIVE, AND THAT THE WORK
AGAINST ANTI-RACIST WORK NEEDS
TO BE DONE MUCH EARLIER AND
SHOULD BE INCLUDED IN MEDICAL
EDUCATION, SHOULD BE CLINICIANS
AND NURSES, AND HOSPITAL STAFF
SHOULD BE MADE MORE AWARE OF
THEIR OWN ACTIONS AND THEIR
IMPACT THAT THOSE HAVE, AND I'M
NOT VERY FAMILIAR YET WITH
ACTIONS THAT HAVE BEEN
SUCCESSFUL AT THE REGIONAL LEVEL
OR NATIONAL LEVEL.
>>THANK YOU SO MUCH.
SO, MY NEXT QUESTION CAN YOU
SPEAK TO RACISM AND
DISCRIMINATION FROM PERSONS FROM
ONE LATIN AMERICAN COUNTRY TO
ANOTHER BEFORE ARRIVING IN THE
U.S. ESPECIALLY PERSONS OF
INDIGENOUS COMMUNITIES, HOW DOES
THAT EXPERIENCE SHOW UP IN
INTERACTION WITH OTHER LATINOS
ON THEIR HEALTH AND STRESS, ET
CETERA?
>>WELL, MY RESEARCH IN LATIN
AMERICA, NOT IN THE U.S., SO I
CANNOT TELL YOU WITH MY OWN DATA
OR MY OWN FINDINGS ABOUT THOSE
INTERACTIONS IN THE U.S.
WHAT I HAVE FOUND INTERESTING IS
THAT IN THE MOST RECENT CENSUS
THERE HAS BEEN IN THE U.S. AN
INCREASE IN THE NUMBER OF PEOPLE
WHO HAVE SELF-IDENTIFIED AS
INDIGENOUS, AND THAT THAT
INCREASE COMES FROM PEOPLE WHO
HAVE COME FROM LATIN AMERICA.
THAT I FIND INTERESTING
OBSERVATION.
>>I THINK IT'S A GREAT
QUESTION, ONE PROBLEM IS WE
DON'T HAVE DATA AND DON'T HAVE
RESEARCHERS THAT ARE INTERESTED
IN THIS.
AND I IMAGINE THE PERSON THAT
ASKED WAS THINKING ABOUT THE
CASE OF HAITIANS.
IT'S A BIG QUESTION.
HAITIANS ARE IN PLACES LIKE
CHILE, WHERE THEY DON'T COLLECT
THIS DATA, THEY HAVE COME
THROUGH CENTRAL AMERICA AND
MEXICO AND A LOT IN TIJUANA, I
DON'T KNOW WHAT THE QUALITY OF
DATA COLLECTION IS IN MEXICO SO
DATA SYSTEMS NOT ONLY HAVE TO BE
FOR IMMIGRANTS HAVE TO BE GOOD
THERE AS WELL AS HERE.
NOW, IDENTIFYING AS INDIGENOUS,
YEAH, THERE'S BEEN INCREASE OF
PEOPLE IDENTIFYING AS INDIGENOUS
AMONG LATIN AMERICANS.
MART IS THE -- PART IS U.S.
CENSUS BUREAU ATTEMPT TO GIVE
EXAMPLES, INSTEAD OF JUST U.S.
GROUPS, LIKE NAVAJO, APACHE, ET
CETERA, THEY ALSO GIVE EXAMPLES
OF LATIN AMERICAN GROUPS.
SO THAT'S CLEARLY AN EXAMPLE.
SO IT PROMPTS PEOPLE NOT TO
ANSWER THEY ARE INDIGENOUS.
>>THANK YOU.
SO, I THINK THE QUESTION GOES
INTO THE LACK OF STUDY YOU
MENTIONED, AND THIS IS
PARTICULAR FOR AFRO LATINO OR
LATINA POPULATION.
HAVE THERE BEEN LARGE
LONGITUDINAL STUDIES FOCUSED ON
THE AFRO LATINO/LATINA
POPULATION, ESPECIALLY
COLLECTING DATA SURROUNDING
LIVED EXPERIENCES?
>>THERE'S HARDLY ANY DATA
COLLECTED AT ALL.
WHEN I WAS REALLY LOOKING INTO
THIS, FIVE OR TEN YEARS AGO,
THERE WAS ALMOST NO DATA
COLLECTED ON AFRO LATINO AND
RELIANCE ON CENSUS WAS A
PROBLEM.
LESS DOMINICANS IDENTIFIED AS
AFRICAN, FROM WHAT PEOPLE TELL
ME THAT'S NOT REALISTIC, FOR
EXAMPLE, AND THAT'S THE EXTENT
OF THE DATA THERE.
A GROUP IN NEW YORK WAS
COLLECTING DATA BUT I'M SURE
THERE'S NO LONGITUDINAL DATA AND
THERE'S PROBABLY -- VERY LITTLE
HEALTH DATA.
ARACHU WOULD KNOW MORE.
>>STUD I HAVES HAVE BEEN
CONDUCTED AMONG LATINA
POPULATIONS IN THE U.S. BUT THE
PROBLEM IS THE PROBLEM OF
CLASSIFICATION IN THE U.S. WHICH
HAS DR. TELLES WAS EXPLAINING
THE SAME CONCEPTS THAT ARE
WIDELY USED IN THE U.S. MAY NOT
BE COMPATIBLE WITH THE ONES FROM
THE PEOPLE IN LATIN AMERICA AND
I SEE STUDIES IN THE U.S. WHERE
THEY BRING TOGETHER GROUPS YOU
WOULD NEVER MIX IN LATIN
AMERICA.
AND THERE ARE COMPARISONS, FOR
EXAMPLE, EVEN IF WE DO STUDIES
FOR EXAMPLE SURVEYS CONDUCTED
THROUGHOUT THE REGION, AND AS
DR. TELLES WAS SAYING IN EACH
COUNTRY THEY USE A DIFFERENT
CLASSIFICATION FOR ETHNICITY OR
SKIN COLOR OF PEOPLE AND THERE
HAVE BEEN ATTEMPTS BY
RESEARCHERS TO COMPARE, FOR
EXAMPLE, TO ATTEMPT TO PUT ALL
THOSE IN THE SURVEY WHO WERE
CLASSIFIED AS AFRO DESCENDANT
INTO ONE GROUP AND THAT DOESN'T
MAKE SENSE, THERE'S A HISTORY
HOW PEOPLE CLASSIFY THEMSELVES
IN EACH COUNTRY.
FOR EXAMPLE, IN BRAZIL THERE WAS
AN INCREASE IN THE NUMBER OF
PEOPLE WHO IDENTIFIED AS AFRO
BRAZILIANS FROM ONE CENSUS TO
THE OTHER, NOT DUE TO INCREASE
IN POPULATION, IT WAS INCREASE
THROUGH A LOT OF EFFORTS TO
PEOPLE IDENTIFY AS AFRO
BRAZILIAN ACCORDING TO INCREASE
PRIDE IN THAT PROCESS.
SO IN EACH COUNTRY THOSE
PROCESSES OF IDENTIFICATION ARE
VERY DIFFERENT, AND YOU CANNOT
COMPARE AFRO DESCENDANTS IN
BRAZIL OR DOMINICAN REPUBLIC,
THOSE HAVE NOT WORKED, EVEN IN
THE U.S., I SEE STUDIES AND
THINK, WOW, IT WOULD BE HARD FOR
ME TO DO MUCH WITH THOSE.
>>ABSOLUTELY.
THANK YOU FOR THAT.
ANOTHER THEME THROUGHOUT THIS
WORKSHOP HAS BEEN FUNDING.
SO, IF ONE HAD UNLIMITED
FUNDING, YOU COULD DESIGN A
STUDY TO ADDRESS SOME OF THE
GAPS YOU'VE IDENTIFIED JUST NOW,
ESPECIALLY SEEING THERE IS A
DEARTH OF STUDIES SURROUNDING
THE AFRO LATINO/LATINA
POPULATION.
COULD YOU DESCRIBE WHAT THAT
STUDY WOULD LOOK LIKE AND WHAT
ARE SOME MEASURES OR ITEMS YOU
WOULD LIKE TO INCLUDE IN SUCH
STUDY?
>>YOU KNOW, I WOULD -- I MEAN,
YOU MENTIONED THERE'S A
DIFFERENT POLITICAL SOCIAL
CONSTRUCTION OF RACE, AND IT IS
SOMETHING POLITICALLY SOCIAL
CONSTRUCTED BUT DIFFERENTLY IN
DIFFERENT COUNTRIES.
SO WE HAVE TO PAY ATTENTION TO
NATIONAL PARTICULARITIES OF HOW,
FOR EXAMPLE, AFRO PEOPLE ARE
IDENTIFIED.
AND THAT'S VERY IMPORTANT.
BUT I THINK, FOR EXAMPLE, THE
ISSUE OF COLOR, YOU HAD SOME
KIND OF CONSISTENT COLOR PALETTE
YOU COULD MEASURE COUNTRY AND
LOOK AT DIFFERENT HEALTH CARE
TREATMENTS OR HEALTH OUTCOMES IN
DIFFERENT PLACES.
AND ON THE SAME BASIS, WITH THE
SAME STANDARD.
>>DR. CASTRO?
>>I WOULD FUND MORE STUDIES
THAT COULD COMPARE THE LIVED
EXPERIENCES OF POPULATIONS IN
THE U.S. AND COUNTRIES OF ORIGIN
OR PARENTS' COUNTRIES OF ORIGIN,
AND DEFINITELY IN TERMS OF
HEALTH CARE, STUDY ASSOCIATIONS
ON ONE HAND LIVING CONDITIONS
AND LIVED EXPERIENCE, AND THE
OTHER THE EXPERIENCES IN THE
CLINICAL ENCOUNTER, AND HOW
RACISM PERMEATES DIFFERENTLY IN
DIFFERENT HEALTH CARE SETTINGS.
IN THE U.S. THERE'S AN EFFORT TO
STUDY RACISM IN CARDIOVASCULAR
HEALTH, IN DIFFERENT AREAS, TO
MY KNOWLEDGE IN LATIN AMERICA
THE LITTLE THAT'S BEEN DONE HAS
BEEN AROUND MATERNAL AND CHILD
HEALTH, SEXUAL AND REPRODUCTIVE
HEALTH BUT WE NEED TO BRING THIS
MORE PROMINENT.
WE NEED TO BETTER UNDERSTAND
WHAT IS HAPPENING IN HEALTH CARE
SETTINGS, MISDIAGNOSED,
MISTREATMENT, NOT PROVIDING
TIMELY CARE FOR PEOPLE WHO NEED
IT, AND TO ESTABLISH
ASSOCIATIONS BETWEEN THAT AND
HEALTH OUTCOMES.
AND TO USE THAT INFORMATION TO
MAKE PEOPLE MORE AWARE OF THEIR
ACTIONS, AND THAT SHOULD BE
DONE, I THINK IT WOULD BE
STRONGER IF IT COULD BE DONE IN
THE U.S. AS IN LATIN AMERICA.
>>ABSOLUTELY.
SO, ANOTHER QUESTION HERE,
REGARDING THE COLLECTION OF RACE
AND ETHNICITY, ACCORDING TO OBN,
ANY THOUGHTS ABOUT REDESIGNING
OR REVISITING SUCH SURVEY?
OR EVEN REDESIGNING IT, EXCUSE
ME, FOR NEW VALIDATED MEASURES?
OMB CATEGORY, FOR THE RACE AND
ETHNICITY, IF ONE LOOKED AT THE
SURVEY, THE SURVEY THAT'S
CONDUCTED EVERY TEN YEARS,
THERE'S A DIFFERENT RACIAL
BREAKDOWN AND OVER THE YEARS IF
YOU'RE FAMILIAR WITH THAT
SURVEY, THE CATEGORIES HAVE
CHANGED, FOR EXAMPLE, THE
LATIN -- HISPANIC LATINO
CATEGORY HAS BEEN MORE
POPULATED, WHERE PEOPLE COULD
ACTUALLY IDENTIFY THEIR COUNTRY
OF ORIGIN, OR TIED TO COUNTRY OF
ORIGIN.
ARE THERE ANY THOUGHTS ABOUT
REDESIGNING THAT?
GO AHEAD.
>>IT'S BEEN REDESIGNED.
THE CENSUS BUREAU PUT FORTH A
ONE-QUESTION FORMAT WITH LATINO
CATEGORY IN THE RACE -- WOULD BE
A RACE, AND THEY WOULD ALSO ADD
MIDDLE EASTERN/NORTH AFRICAN,
THAT WAS BASICALLY NOT DONE IN
THE 2020 CENSUS BECAUSE THE
TRUMP ADMINISTRATION SAT ON IT
AND THEY DIDN'T LET IT PASS, AND
THERE WAS A LOT OF OPPOSITION BY
PEOPLE THAT WERE ON THE PANEL
THE CENSUS BUREAU -- THE OMB
PANEL INCLUDING PEOPLE FROM THE
HERITAGE FOUNDATION, AND THAT
WOULD HAVE BEEN -- WOULD HAVE
ALLOWED PEOPLE TO CHECK MORE
THAN ONE SO THEY COULD CHECK
HISPANIC AND BLACK, AND BUT IT
STILL HAS THE SAME PROBLEMS,
MOST PEOPLE ONLY CHECK ONE.
BUT IT WOULD OVERCOME THE
PROBLEM OF 40% OF LATINO
CLASSIFYING AS SOME OTHER RACE.
SOME OTHER RACE IS ACTUALLY THE
SECOND LARGEST OR SECOND LARGEST
OR THIRD LARGEST RACIAL GROUP IN
THE UNITED STATES, WHICH DOESN'T
MAKE ANY SENSE.
>>THANK YOU.
I DO HAVE A QUESTION HERE,
LEONARDO, WOULD YOU BE ABLE TO
JUST TYPE IT IN?
>>YES, I WILL TYPE IT IN.
>>IN THE MEANTIME I WILL ASK
THE NEXT QUESTION.
WHAT ARE IMPORTANT RESEARCH
QUESTIONS THAT WE NEED TO ANSWER
NOW TO ADDRESS RACISM IN HEALTH
CARE?
>>LET ME JUST FINISH WHAT I WAS
GOING TO SAY ON THE LAST ONE,
OMB QUESTION.
I MEAN, EITHER THE TWO-QUESTION
FORMAT OR ONE-QUESTION FORMAT IS
THE POINT I WAS TRYING TO MAKE
IN MY TALK, THAT'S NOT ENOUGH.
THE CENSUS, I GET IT COST
MILLIONS OF DOLLARS TO ADD A
QUESTION, BUT MAYBE AT LEAST IN
SURVEYS WE CAN ASK OTHER
QUESTIONS LIKE, YOU KNOW, WE CAN
GET QUESTIONS ON COLOR OR WE CAN
ASK IN DIFFERENT WAYS IF YOU
HAVE AFRICAN ANCESTRY, ET
CETERA.
>>I THINK BUILDING ON THAT,
ALSO ADDRESSING THE QUESTION, IS
THAT WE SHOULD BE MORE DEMANDING
ABOUT WHAT ARE THE CONCEPTUAL
MODELS THAT RESEARCHERS IN
PUBLIC HEALTH USE, WHEN THEY
WANT TO STUDY THE LATINO/LATINA
POPULATION IN THE U.S. BECAUSE
WHAT DOES IT MEAN TO PUT INTO
ONE SINGLE CATEGORY PEOPLE FROM
PUERTO RICO, PEOPLE FROM CHILE,
PEOPLE FROM MEXICO.
I'M AN ANTHROPOLOGIST, I REALLY
DON'T UNDERSTAND HOW I CAN
INTERPRET DATA WHERE PEOPLE WHO
COME FROM VERY DIFFERENT
BACKGROUNDS CAN BE JUST PUT
TOGETHER BECAUSE THEY SHARE A
COLONIAL LANGUAGE WHICH IS
SPANISH.
I'M FROM SPAIN, I'M ALSO IN THE
CATEGORY OF HISPANIC, AND I
REALLY DON'T UNDERSTAND WHY LIKE
PEOPLE FROM SPAIN ARE PUT
TOGETHER WITH PEOPLE FROM
GUATEMALA, WHICH, AGAIN, I DON'T
THINK EVEN FROM, YOU KNOW,
ANTHROPOLOGICAL OR HEALTH
PERSPECTIVE MAKES MUCH SENSE,
MORE WORK NEEDS TO BE DONE IN
HOW PEOPLE USE THAT DATA TO DO
RESEARCH.
>>ABSOLUTELY.
THANK YOU.
STILL WAITING FOR THE QUESTION.
LEONARDO, I WANTED IT TO BE
TYPED IN THE CHAT AND CAPTURED
BUT YOU CAN UNMUTE AND ASK.
>>OKAY.
IN THE CASE OF LATINOS, MY
PERSONAL OPINION, I THINK THAT
SELF-IDENTIFIED RACE IS REALLY
INSUFFICIENT TO CAPTURE THE
THREE-WAY RACIAL COMPONENTS THAT
WE HAVE, THAT LATINOS HAVE.
SO, WHAT DO YOU GUYS THINK ABOUT
USING GENERIC CENSUS 3 AS A WAY
TO MEASURE SOME OF THE
INEQUITIES THAT YOU'RE TRYING TO
MEASURE?
>>WELL, GENETIC ORIGIN IS NOT
NECESSARILY ASSOCIATED WITH
CERTAIN HEALTH OUTCOMES.
THE EXPERIENCE OF RACISM IS NOT
BASED ON GENETIC COMPOSITION.
IT'S BASED ON APPEARANCE.
SO I DON'T KNOW WHY SOME MEME
MAY NOT EVEN KNOW THEIR GENETIC
ORIGIN, AND I REALLY AM NOT SURE
HOW THAT CAN HELP UNDERSTAND
IDENTITY OR HOW SOMEBODY
PROJECTS TO OTHERS, THE ONES WHO
PERPETRATE RACISM AGAINST THEM
BASED ON GENETIC COMPOSITION.
>>GO AHEAD.
>>GO AHEAD, EDWARD.
>>I MEAN, THERE'S NOT --
APPEARANCE IS REALLY IMPORTANT
IN LATIN AMERICA, THE WAY PEOPLE
ARE TREATED IS IMPORTANT IN
LATIN AMERICA AND THE UNITED
STATES I SHOULD SAY, AND NOT
NECESSARILY THE WAY PEOPLE
SELF-IDENTIFY.
GET WHAT I WOULD TRY TO TO DO
WITH COLOR PALETTE, GET AT SOME
APPROXIMATION APPEARANCE.
I THINK YOU'RE ASKING ABOUT THE
GENETIC ANCESTRY TEST PEOPLE
TAKE, I GUESS IN HEALTH YOU
COULD GET THAT.
THAT'S LOOSELY CORRELATED WITH
APPEARANCE.
IT MIGHT BE A LITTLE BETTER.
WHEN YOU'RE DOING A HEALTH
SURVEY, YOU TAKE PEOPLE'S BLOOD
AND MAYBE THAT WOULD HELP BUT
THAT'S FAR FROM PERFECT BECAUSE
OF THE LACK OF ASSOCIATION.
>>UNFORTUNATELY, WE'RE AT TIME.
THANK YOU FOR THE
THOUGHT-PROVOKING AND ENCOURAGE
DISCUSSION AND AUDIENCE FOR YOUR
QUESTIONS.
NEXT IS OUR BREAK.
PLEASE RETURN AT OR BEFORE 3:20
FOR THE NEXT SESSION ON
GENOMICS.
THANK YOU.
>>WELCOME BACK.
THE NEXT SESSION IS GENOMICS
MODERATED BY RINA DAS.
ENJOY.
>>I'M DR. RINA DAS, FROM NIMHD,
AND I'LL BE THE MODERATOR.
WE HAVE FIVE GREAT TALKS FOR
YOU, SPEAKERS ARE DR. LEONARDO
MARINO, DR. LOPERA
, FOLLOWED BY A PANEL
DISCUSSION.
>>GOOD AFTERNOON, I'M A
STADTMAN INVESTIGATORS, I'M
GOING TO PRESENT CONSORTIUM FOR
GENOMIC DIVERSITY ANCESTRY AND
HEALTH IN COLOMBIA.
THIS FIGURE PUBLISHED IN NATURE
GENETICS PAPER OF 2019 SHOWS HOW
GENOMIC GWAS STUDIES LAG IN
DIVERSITY REPRESENTING THE
GLOBAL POPULATION.
IN THE UPPER PANEL WE SEE THAT
THE GWAS FROM DIFFERENT, FOR
EXAMPLE EUROPEAN IN RED, EAST
ASIAN IN BLUE, AND SO ON, 79% OF
ALL GWAS PARTICIPANTS ARE FROM
EUROPEAN ACCIDENT, DESPITE
MAKING ONLY ABOUT 15% OF THE
GLOBAL POPULATION.
THIS IS PROBLEMATIC, AS AFRICAN
AMERICAN AND HISPANIC OR LATIN
AMERICAN ANCESTRY POPULATIONS
CONTRIBUTE TO DISPROPORTIONATELY
HIGH NUMBER OF ASSOCIATIONS
RELATIVE TO STUDIES OF SIMILAR
SIZES IN EUROPEANS.
WE AGREE IT'S NECESSARY TO CLOSE
THE GAP, GENOMIC STUDIES NEED TO
BE MORE REPRESENTATIVE OF ALL
POPULATIONS SO PEOPLE FROM
EVERYWHERE IN EVERY ETHNICITY
AND RACE CAN BENEFIT FROM
IMPROVED HEALTH OUTCOMES.
TO USE GENOMIC DIVERSITY IN
SUPPORT FOR GLOBAL HEALTH WE
NEED TO INCREASE DIVERSITY OF
HUMAN GENOMIC DATASETS IN
SUPPORT OF GLOBAL PRECISION
MEDICINE WITH EMPHASIS ON ADMIX
GENOMES AND NEED TO SUPPORT
RESEARCH ON GENOMICS,
BIOINFORMATICS, PRECISION
MEDICINE, IN LATIN AMERICA AND
TODAY I'M GOING TO TALK ABOUT
THE EFFORTS THAT I'VE BEEN
LEADING AND COLLABORATING WITH
RESEARCHERS IN COLOMBIA TO BUILD
BRIDGES BETWEEN COLOMBIA, LATIN
AMERICA AND THE U.S.
THIS SETS THE STAGE FOR ANCESTRY
AND HEALTH IN COLOMBIA,
COMPREHENSIVE PLATFORM FOR
ANALYSIS INCLUDING VARIANTS,
CLINICAL ANNOTATION, ALLELE
FREQUENCIES, AS WELL AS PATTERNS
OF GENETIC ANCESTRY AND
ADMIXTURE.
AND THIS IS HOW CODIGO WORKS.
LABORATORIES SHARE WITH A TEAM,
CONTRIBUTING INVESTIGATORS
MAINTAIN OWNERSHIP AND CONTROL
OF THEIR DATA.
NO INDIVIDUAL DATA OR METADATA
ARE RELEASED INTO THE PUBLIC.
ONLY SUMMARY STATISTICS, DERIVED
FROM THE DATA ARE RELEASED TO
THE PUBLIC.
ALL CONTRIBUTING INVESTIGATORS,
COLLABORATE AND RECEIVE CREDIT
FOR THE PLATFORM AND ANY
PUBLICATIONS THAT ARISE FROM IT.
WE HAVE ALL GENOME SEQUENCES,
WHOLE EXOME SEQUENCES, WHOLE
GENOME GENOTYPES.
AS YOU CAN SEE, THE POPULATIONS
COME FROM DIVERSE LOCATIONS IN
COLOMBIA, AND REPRESENT MAJORITY
OF ADMIX POPULATIONS AS WELL AS
NATIVE POPULATIONS THAT WERE
SAMPLED IN COLOMBIA.
THIS SLIDE SHOWS THE GENETIC
ANCESTRY COMPOSITION FOR THE
DIFFERENT POPULATIONS THAT HAVE
BEEN SAMPLED IN THE CODIGO
PROJECT.
YOU CAN SEE, WE HAVE POPULATIONS
THAT ARE MOSTLY NATIVE AMERICAN,
REPRESENTING THE RED FRACTION
HERE, WE ALSO HAVE SOME MORE
ADMIX POPULATIONS LIKE THE ONES
IN MEDELLIN, AS WELL AS SOME
POPULATIONS THAT HAVE MORE
AFRICAN ANCESTRY SHOWING
DIVERSITY OF COLOMBIA GENOMES.
AND THIS IS SUMMARY STATISTICS
SLIDES THAT SHOW WE HAVE OVER
100 VARIANTS REPRESENTED HERE
FROM 1700 PARTICIPANTS, 16
POPULATIONS, 10 DATA SOURCES.
IN THIS SLIDE EACH OF THE
INDIVIDUALS PRESENT IN CODIGO
HAVE BEEN COLOR CODED BY THEIR
FRACTION OF AFRICAN, EUROPEAN,
NATIVE AMERICAN ANCESTRY,
DEPENDING ON THEIR COMPOSITION
IN THE GENOME.
AND AS YOU CAN SEE, WE HAVE
GREAT DIVERSITY REPRESENTED
HERE, NOT ONLY FOR THE MOSTLY
ADMIX GENOMES BUT ALSO SOME
POPULATIONS THAT ARE MORE NATIVE
AMERICAN OR MORE AFRICAN IN
THEIR COMPOSITION.
AND THIS IS A PREVIEW OF THE
HOME PAGE FOR THE CODIGO PROJECT
SOON RELEASED TO THE PUBLIC.
I WOULD LIKE TO CLOSE BY
ACKNOWLEDGING ALL THE
INVESTIGATORS THAT HAVE
PARTICIPATED IN CODIGO.
WE HAVE AUGUSTO, MIGUEL, JUAN,
AND WE HAVE KING JORDAN FROM
GEORGIA TECH.
EVERYONE HAVE COLLABORATED AND
CONTRIBUTED TO MAKE THIS A
REALITY, AND WITH THIS I WOULD
LIKE TO TAKE QUESTIONS.
>>THANK YOU TO THE NIH FOR THE
OPPORTUNITY TO TALK ABOUT
ALZHEIMER'S IN COLOMBIA.
WE'VE STUDIED THE LARGEST
POPULATION IN THE WORLD WITH
AUTOSOMAL DOMINANT ALZHEIMER'S
DISEASE, MOST LIVING IN
ANTIOCHIA REGION OF COLOMBIA.
WITH THE UNIVERSITY OF
WASHINGTON WE DISCOVERED THE
FAMILIES ARE AFFECTED BY THE
PATHOGENIC MUTATION E2 80A,
THERE IS A FOUNDER EFFECT IN
THIS POPULATION, COMING FROM A
COMMON ANCESTRY IN 14 OF THE
FAMILIES FROM 1745 BUT WE THINK
ALL THE FAMILIES ARE COMING FROM
THE SAME COMMON ANCESTRY.
WE HAVE STUDIED ALMOST 5,000
MEMBERS OF THE FAMILIES, AND
1,119 OF THEM ARE LIVING
CARRIERS AFFECTED OF THEY ARE
GOING TO BE AFFECTED OF
ALZHEIMER'S DISEASE IN THE NEXT
YEARS, BECAUSE THIS MUTATION IS
100% PENETRANT.
WE PUBLISH IN THIS PAPER THE
STAGE IN THE POPULATION AND THE
STARTING AT 49, THEY DIED AT 59
YEARS OLD, NCI STARTS AT 44,
SYMPTOMATIC STARTS AT 38, AND
ASYMPTOMATIC PRE-MCI STARTS AT
34, WHEN THEY DON'T HAVE MEMORY
COMPLAINTS BUT THEY HAVE TWO
STANDARD DEVIATION IN DIFFERENT
COGNITIVE CONTACTS WITH KNOWN
CARRIERS.
WE STUDIED ALSO AMYLOIDOSIS
USING A MARKER FOR AMYLOID, WE
TRAVELED WITH 50 MEMBERS OF THE
FAMILIES FROM MEDELLIN TO
PHOENIX IN 2011, IN ORDER TO
LOOK AT BETA AMYLOID, AND WE
FOUND THAT FOUR CARRIERS WITH
SLIGHT DEMENTIAA ALSO POSITIVE,
AND SEVEN CARRIERS WITH MCI, ALL
OF THEM WERE POSITIVE FOR PET
AMYLOID, AND 20 NON-CARRIERS,
ASYMPTOMATIC MEMBERS OF THE
FAMILY, ALL OF THEM WERE
NEGATIVE FOR PET AMYLOID.
INSIDE THE SQUARE YOU HAVE THE
ASYMPTOMATIC CARRIERS, AND ALL
OF THEM MORE THAN 28 YEARS OLD
WERE POSITIVE FOR PET AMYLOID,
THE CONCLUSION WAS THAT
AMYLOIDOSIS STARTS AT 28 YEARS
OLD IN THIS POPULATION.
AFTER THAT WE TRAVELED WITH
SEVERAL MEMBERS OF THE FAMILIES
FROM MEDELLIN TO BOSTON, IN
ORDER TO LOOK AT PET TAU, WE
FOUND THAT AT 28 YEARS OLD, EVEN
IF THEY HAVE AMYLOIDOSIS THEY
DON'T HAVE TAUOPATHY BUT
TAUOPATHY STARTS AFTER 38 AND
PETOPATHY MORE STRONGER AT 44
WHEN THEY HAVE MCI.
THE CONCLUSION WAS THAT
TAUOPATHY STARTS AT 38 YEARS
OLD, 10 YEARS AFTER AMYLOIDOSIS.
WE STUDIED LEVEL OF CSF AND
FOUND IN THE PRE-CLINICAL STATES
CARRIERS HAVE HIGH LEVEL OF
A-BETA 4 CSF WITH NON-CARRIERS,
DECREASED WHEN THEY ARRIVED TO
MCI STAGE.
WE STUDIED ALSO BIOMARKERS, AND
WE FOUND THAT CARRIERS IN RED,
THEY HAVE HIGH LEVEL OF
PHOSPHO-TA 217, IN RED HIGH
LEVEL OF NEUROFILAMENTS IN PLAS
M A AND BOTH BIOMARKERS ARE
POSITIVE AT 22 YEARS OLD, 20
YEARS BEFORE HAVING MCI.
THEN THESE ARE VERY GOOD
BIOMARKERS FOR THE PRE-CLINICAL
STAGE.
WE STUDIED COGNITIVE DECLINE
LOOKING FOR ESTIMATE THE CHANGE
POINT IN SERA TAX, THERE'S
DECLINE EVER MEMORY AT 32 YEARS
OLD.
THEN WITH THIS INFORMATION WE
WERE ABLE TO RECONSTITUTE
NATURAL HISTORY EVOLUTION IN
THIS POPULATION, CLINICAL PHASE
STARTS AT 44 WITH MCI, FOLLOWED
BY DEMENTIA AT 49, AND THEY DIED
AT 59 YEARS OLD.
THE PRE-CLINICAL PHASE WE CAN
DITCHED IN SEVERAL PHASES,
PHASES 0 FROM BIRTH TO 24 YEARS
OLD WHEN WE CAN SAW HIGH LEVEL
FOR TAU 217 IN PLASMA.
PHASE 1 FROM 24 TO 48 WHEN WE
CAN SEE AMYLOID POSITIVE IN PET
AMYLOID IMAGE, PHASE 2 FROM 28
TO 32 WHEN WE CAN SEE DECLINE IN
MEMORY TAX EVEN IF THEY DON'T
HAVE MEMORY COMPLAINTS AT THIS
MOMENT.
PHASE 3 FROM 32 TO 38 WHEN WE
CAN SEE PETS AMYLOID POSITIVE IN
IMAGE, AND PHASE 4, FROM 38 TO
44, WHEN MCI STARTS.
WE CAN DO PALLIATIVE TREATMENT
WHEN THEY HAVE DEMENTIA, WE CAN
DO PREVENTION WHEN THEY HAVE
MCI, SECONDARY PREVENTION IN
PHASE 2, 3, AND 4 IN
PRE-CLINICAL PHASE, AND PRIMARY
PREVENTION IN PRE-CLINICAL PHASE
0 AND 1.
WE HAVE DISCOVERED A PROTECTIVE
GENE FOR ALZHEIMER'S DISEASE IN
THIS POPULATION.
THE MOST IMPORTANT WOMEN IN THE
RESEARCH, AUGUSTA HER BRAIN
SHOWS US HOW THE BRAIN IS
AFFECTED BY ALZHEIMER'S DISEASE,
AND ALIRIA'S BRAIN SHOWS HOW A
BRAIN IS PROTECTED FROM
ALZHEIMER'S DISEASE.
ALIRIA WAS A WOMAN WHO HAD THE
MUTATION, AND ONE OTHER MUTATION
IN ApoE 3 MUTATION, AND SHE
HAD RESISTANCE TO AUTOSOMAL
DOMINANT ALZHEIMER'S DISEASE.
SHE DID MCI AT 72 YEARS OLD, AND
AT THIS MOMENT SHE HAD BELOW YOU
YOU CAN SEE THE P-TAU AT 72
YEARS, WHEN SHE STARTS MCI AND
SHE WAS PROTECTED FROM
TAUOPATHY, IN RELATION TO HER
COUSIN WHEN SHE HAD 44, SHE HAD
SO MUCH TAU PATHOLOGY IN THE
BRAIN, PROTECTED BECAUSE SHE WAS
CARRIER OF MUTATION.
WE PUBLISHED HOW THE BRAIN OF
ALRIRIA WAS PROTECTED FROM
ALZHEIMER'S DISEASE BECAUSE SHE
DIED, AND WE STUDIED THE BRAIN,
MY STUDENTS IN THE LAST YEARS,
NOW THEY ARE LEADERS IN THE
RESEARCH IN THE WORLD.
WHAT HAVE WE LEARNED FROM 40
YEARS OF AUTOSOMAL DOMINANCE IN
COLOMBIA?
WE FOUND A WAY TO PREVENT
ALZHEIMER'S DISEASE, TO READ, TO
LEARN, AND TO IMITATE NATURE.
THIS IS THE LESSON ALIRIA GAVE
US, AND THE MESSAGE TO TAKE HOME
IN THIS TALK IS TO PREVENT
DEMENTIA, READ, LEARN, IMITATE
NATURE.
FOR THAT, YOU NEED TO LOOK FOR
CASINGS OF DEMENTIA BY CAUSALITY
GENES, YOU NEED TO LOOK FOR
RESISTANCE CASES OF ALZHEIMER'S
ZEST OR NEURODEGENERATIVE
DISEASE, YOU NEED TO LOOK FOR
PROTECTOR GENES IN THESE CASES.
LOOK HOW THE PROTECTOR GIRNS
DELAY OR PREVENTS THE ONSET OF
SYMPTOMS OF DEMENTIA, AND
IMITATE WHAT NATURE DOES IN
THESE CASES.
THIS IS MY TEAM IN THE
UNIVERSITY, IN MEDELLIN,
COLOMBIA.
THANK YOU VERY MUCH FOR YOUR
ATTENTION TO THIS TALK.
>>I EXPRESS MY GRATITUDE FOR
INVITING ME AND TALK ABOUT ROAD
FOR IMPLEMENTENING PRECISION
MEDICINE IN TYPE 2 DIABETES.
THE GOAL IS TO PROVIDE TOOLS FOR
THE PREDICTION, DIAGNOSIS,
TREATMENT IN CONDITIONS,
ACCORDING TO CHARACTERISTIC OF
THE PATIENTS, THIS IS THE CASE
FOR TYPE 2 DIABETES.
THIS CONDITION IS AMONG THE MAIN
HEALTH ISSUES IN MEXICO,
CURRENTLY 13.4 MILLION
INDIVIDUALS LIVE WITH DIABETES,
34% OF THEM ARE UNDIAGNOSED,
PRECISION MEDICINE MAY HELP TO
REDUCE THE UNDIAGNOSED AND
UNDERTREATMENT OF THAT TYPE 2
DIABETES.
FOLLOWING THAT, PRECISION
MEDICINE SHOULD CONSIDER THE
CLINICAL EXPRESSION OF THE
DISEASE, IN MEXICO, 30% OF THE
PERSON LIVING WITH DIABETES
BEFORE AGE 40.
WE HAVE AN INCREASED
SUSCEPTIBILITY FOR:COMPLICATIONS
LIKE NEPHROPATHY.
ALSO, DIABETES ALWAYS COME WITH
CONDITIONS LIKE NON-ALCOHOLIC
HEPATITIS OR SEVERAL LIPID
DISORDERS.
WE CAN CONFRONT THIS PROBLEM AND
GENERATE EVIDENCE TO PROVIDE
PRECISION MEDICINE PROGRAM, IN
WAYS DOING WAYS DOING THE BEST
PROVIDED MEDICAL CARE, LINKING
OUR DAILY ACTION TO RESEARCH.
SEVEN YEARS AGO WE STARTED DIE
BETS CENTER IN WHICH WE FOCUSED
ATTENTION FOR PEOPLE LIVING WITH
DIABETES, LESS THAN FIVE YEARS,
FREE OF CHRONIC COMPLICATIONS.
IN ONE DAY ALL PATIENTS SHEAFED
TRAINING LIKE SCHOOL TO PREVENT
CHRONIC COMPLICATIONS,
EMPOWERING THEM TO TAKE CARE OF
THEMSELVES, OF THEIR DISEASE.
IN ADDITION, ELECTRONIC MEDICAL
RECORD WAS DESIGNED THAT HELPED
US TO HAVE CLINICIANS TO
IDENTIFY THE AREAS IN WHICH
ADDITIONAL EFFORTS ARE REQUIRED
IN DIABETES.
AT THE SAME TIME, METABOLIC UNIT
WAS BUILT, IN THESE WE HAVE
STATE-OF-THE-ART TECHNIQUES TO
MEASURE GLUCOSE METABOLISM, BODY
COMPOSITION, VASCULAR FUNCTION,
AND RESPONSE TO EXERCISE.
THE RESULTS WERE OBTAINED IN A
COUPLE OF YEARS, NOW WE HAVE
LARGE DATABASE, FOR EXAMPLE WE
HAVE A COHORT STUDY FOR OVER
THREE YEARS, LARGE SAMPLE SIZE,
GWAS STUDIES
EXOME SEQUENCE, NATIONAL
SURVEYS, NATIONWIDE SURVEYS,
ALSO IMPLEMENTING DIABETES
PREVENTION TRIALS WITH MORE THAN
1,000, INFORMATION OBTAINED WITH
BARCODED WEB-BASED
QUESTIONNAIRES, KEEPING PRIVACY
OF PATIENTSN A BIOBANK.
WITH THIS INFORMATION WE
COLLABORATED WITH OTHER MEXICANS
AND U.S. INSTITUTIONS TO DO THE
FIRST GWAS FOR DIABETES,
COMPARED CONTRIBUTION OF
SUSCEPTIBILITY GENES, KNOWN IN
2014, AND THESE VARIANTS HIGHLY
PREVALENT AMONGST MEXICANS,
IDENTIFIED NATIVE AMERICAN
SPECIFIC SUKS ALLELES, I WANT TO
HIGHLIGHT ONE STRONGLY
ASSOCIATED WITH TYPE 2 DIABETES,
SUKS HAPLOTYPE IN 25%, 50% IN
NATIVE AMERICAN POPULATIONS.
THIS IS A NEW PLAYER IN THE
PATHOPHYSIOLOGY OF TYPE 2
DIABETES AND ALSO IT'S GOOD
EVIDENCE OF SELECTION PROCESS OF
POPULATIONS, HIGH SUSCEPTIBILITY
FOR TYPE 2 DIABETES.
THESE FINDINGS, EXPLAIN PART OF
THE CLINICAL CHARACTERISTICS OF
THE MEXICAN POPULATION, LIVING
WITH DIABETES, BECAUSE THOSE
HAVE ALLELE, EXPRESS THE DISEASE
AT EARLY AGE, THOSE HAVING LOWER
BODY MASS INDEX.
THE PRESENCE OF SUSCEPTIBILITY
ALLELE RESULTS IN ACCUMULATION
OF SUBSTANCE KNOWN TO CAUSE
INSULIN RESISTANCE.
METABOLIC UNIT, STUDY LARGE
NUMBER OF PATIENTS WITH CASES
AND CONTROLS AND WE FOUND
ASSOCIATION WITH ADIPOSEYTES
DYSFUNCTION, LINKING NATIVE
AMERICAN BACKGROUND WITH
METABOLIC DISORDERS, WE ALSO
HAVE PREVIOUSLY FOUND
ASSOCIATION WITH ABCC1, ALLELES,
ALSO CLASSIC ASSOCIATION OF
PNPLA3 WITH NASH.
EXTENDING SAMPLE SIZE WE LOOK
FOR ASSOCIATION WITH GENETIC
CONSORTIA, MOST RECENT PAPER IS
ALREADY SUBMITTED FOR
PUBLICATIONS, AND SAMPLE SIZE
HAS GROWN SIGNIFICANTLY, TO
IDENTIFY NEW SPECIFIC
ASSOCIATIONS AND EFFECT OF RARE
VARIANTS WITH SMALL FREQUENCY,
IN THE RIGHT PART YOU CAN SEE
THE MOST RECENT PLOT IN WHICH
BOTH SUSCEPTIBILITIES TO
VARIANTS WERE INCLUDED, ALSO
SPECIFIC REFERENCE FOR FUTURE
STUDIES.
AS YOU KNOW, GENETIC RESULTS ARE
STILL DIFFICULT TO BE TRANSLATED
IN CLINICAL PRACTICE.
BASED ON THAT WE APPLIED
ARTIFICIAL INTELLIGENCE
TECHNIQUES TO GENERATE
PHENOTYPES THAT HAVE
IMPLICATIONS IN CLINICAL
PRACTICE.
WE HAVE FIVE PHENOTYPES THAT HAS
BEEN DESCRIBED BY AUTHORS, ONE
RELATED WITH AGE, ANOTHER
RELATED TO OBESITY, TWO ARE
SEVERE INSULIN RESISTANCE, WE
MEASURED PREVALENCE OF
PHENOTYPES IN COHORTS, INCLUDING
NATIONWIDE POPULATION SURVEY,
REGRETTABLY THE MOST FREQUENT
PHENOTYPE IS SEVERE INSULIN
DEFICIENCY VARIANT THAT IS DUE
BY THE LACK TO MEDICAL CARE OR
DEFICIENT TO MEDICAL CARE, WHEN
INDIVIDUALS IMPROVED GLUCOSE
LEVELS THEY USUALLY MOVED TO THE
AGE-RELATED DIABETES OR
OBESITY-RELATED DIABETES, FORMS
HAS A PROGNOSIS, A CLEAR
EVIDENCE, PRECISION MEDICINE
COULD BE USEFUL IN CLINICAL
PRACTICE, IDENTIFYING THAT CAN
CHANGE PROGNOSIS BY
CHARACTERIZATION OF THE WHOLE
DIABETIC POPULATION.
LESSONS WE LEARNED IN THE
PROCESS IS THAT EFFECTIVE
IMPLEMENTATION OF THESE
PRECISION MEDICINE APPROACH
STARTS WITH BUILDING THIS
INFRASTRUCTURE, CREATING
DATABASES, LINKING OUR CLINICAL
WORK WITH RESEARCH FROM THE
BEGINNING.
THE SECONDS STEP IS CREATING A
MULTI-DISCIPLINARY TEAM.
FOLLOWED BY LOOKING FOR
INCLUSION OF THESE LARGE
DATABASES IN INTERNATIONAL
CONSORTIA, HIGHLIGHTING ADDED
VALUE OF MINORITY GROUPS AND
FINALLY LOOKING FOR TRANSLATION
IN CLINICAL WORK OF THIS
INFORMATION, USING ARTIFICIAL
INTELLIGENCE DATA IN CONJUNCTION
WITH GENETIC INFORMATION.
YOU CAN ACCESS ADDITIONAL DATA
VISITING OUR WEB PAGE OF THE
INSTITUTE OF NATIONAL DISEASES.
THANK YOU VERY MUCH FOR YOUR
ATTENTION.
>>HELLO, EVERYBODY.
I'M EXCITED TO BE HERE, I'M
LAURA FEJERMAN, PROFESSOR IN THE
DEPARTMENT OF PUBLIC HEALTH
SCIENCES, AND I'LL BE TALKING TO
YOU ABOUT ACHIEVING EQUITY IN
BREAST CANCER PRECISION
PREVENTION FOR HISPANIC/LATINA
WOMEN.
BREAST CANCER INCIDENCE AROUND
THE WORLD, ALSO WITHIN THE
UNITED STATES, VARIES BY RACE,
ETHNIC.
YOU CAN SEE HISPANIC/LATINA
WOMEN COMPARED TO OTHER GROUPS.
IN LATIN AMERICA YOU CAN SEE
ANOTHER VARIATION IN TERMS OF
INCIDENCE, FOR EXAMPLE YOU CAN
SEE HIGH INCIDENCE IN ARGENTINA
REGION, BRAZIL, LOWER INCIDENCE
IN BOLIVIA, PERU, MEXICO.
I'M VERY INTERESTED IN THIS
VARIATION.
IN PARTICULAR, MANY YEARS AGO I
LOOKED AT THE DISTRIBUTION OF
GENETIC ANCESTRY, DIFFERENT
LATIN AMERICAN COUNTRIES, AND
AMONG U.S. HISPANIC LATINAS IN
THE U.S. AND FOUND THERE WAS
ASSOCIATION BETWEEN INDIGENOUS
AMERICAN COMPONENT IN BLUE,
LOWER RISK AMONG THOSE WITH HIGH
INDIGENOUS AMERICAN ANCESTRY,
HIGHER RISK AMONG HISPANIC
LATINAS WITH HIGH EUROPEAN
ANCESTRY, YOU CAN SEE DIFFERENT
GROUPS FROM KAISER COHORT, FOR
EXAMPLE, A LOT LESS INDIGENOUS
AMERICAN ANCESTRY, WOMEN IN
PERU, PROPORTION OF INDIGENOUS
AMERICAN ANCESTRY.
WE FOLLOWED UP TRYING TO
IDENTIFY SPECIFIC BIAS TO
EXPLAIN HIGHER RISK AMONG
INDIGENOUS AMERICAN ANCESTRY
PARTICIPANTS, AND IN 2014 WE
PUBLISHED THE FIRST GENOME WIDE
ASSOCIATION STUDIES,
HISPANIC/LATINAS, SHOWING
CHROMOSOME 6, REGION NEAR THE
ASSOCIATION RECEPTOR 1 GENE.
WHAT'S INTERESTING ABOUT THE
POLYMORPHISM, IT HAS RELATIVELY
HIGH FREQUENCY IN
HISPANIC/LATINA WOMEN, ALMOST
ABSENT IN ALL OTHER ANCESTRAL
BACKGROUNDS, LINKED TO
INDIGENOUS AMERICAN COMPONENT,
PRESENTING FREQUENCY IN THOUSAND
GENOMES, ALSO HERE YOU CAN SEE
THE HISPANIC-LATINAS IN THOUSAND
GENOMES, THE GROUP WITH THE
HIGHEST PROPORTION OF THE
PROTECTIVE ALLELE THAT WE
DISCOVERED, IN PERU, ALSO
COMPARED TO MEXICO, COLOMBIA,
PUERTO RICO, THE COUNTRY WITH
THE HIGHEST INDIGENOUS AMERICAN
ANCESTRY.
WHY DO WE CARE ABOUT FINDING
AGAINST ASSOCIATED WITH BREAST
CANCER RISK?
THERE'S OF COURSE UNDERSTANDING
CANCER BIOLOGY FOR DEVELOPMENT,
PREVENTION, TREATMENT, AND THEN
THERE'S ALSO BREAST CANCER RISK
PREDICTION, THIS IS WHERE
PRECISION PREVENTION COMES IN,
AND SO WE WANT TO BE ABLE TO
TELL PARTICIPANTS IN STUDIES ,
WOMEN IN THE COMMUNITIES, THEIR
RISK TO DEVELOP BREAST CANCER
FOR PREVENTION AND EARLY
DETECTION.
AND MOST HAVE BEEN IN BRCA1 AND
BRCA2 WHETHER WE CAN TELL A
PERSON WITH THE MUTATION WHAT
THEIR RISK OF DEVELOPING THE
DISEASE IS, THAT THERE'S ALSO
THIS HAS BEEN GROWING IN THE
LAST MANY YEARS, HIGHER
FREQUENCY THAT CAN INFORM MORE
GENERALLY THE POPULATION IN
TERMS OF PROVIDING DISTRIBUTION
OF RISK, AMONG WOMEN, THAT CAN
THEN BE USED TO PROVIDE ADVICE
ON HOW TO PERFORM, HOW OFTEN TO
PERFORM MAMMOGRAMS OR EVEN IF
YOU'RE THE HIGHER -- YOU'RE IN
THE TOP PART OF THE DISTRIBUTION
WITH HIGHEST RISK, WE MIGHT BE
ABLE TO RECOMMEND ADDITIONAL
PREVENTION INCLUDING CONSIDERING
CHEMOPREVENTION AMONG THOSE WHO
MIGHT BE AT MORE THAN 30% RISK,
LIFETIME RISK.
AND SO THIS CAN BE USED TO
CREATE POLYGENIC RISK SCORES,
WHICH ADD THEM UP, BASICALLY FOR
EFFECT SIZE, FOR EACH
PARTICIPANTS, AND WE'VE DONE
POLYGENIC RISK PREDICTION IN
HISPANIC LATINAS IN THE PAST,
PUBLISHED A PAPER IN 2019 ON
THIS SHOWING EVEN THOUGH MOST OF
THE DYADS WE USED WERE EUROPEANS
OR ASIANS, THERE'S ACTUALLY VERY
SIMILAR ASSOCIATED PREDICTIVE
COMPARED TO EUROPEANS, AREA
UNDER THE CURVE, .64, . 63 FOR
YOUR APPEARANCE, IN THIS CASE
ADDED PROTECTIVE POLYMORPHISM,
ANOTHER IN THE SAME REGION, TO
THE PRS, AND WE GOT THIS REALLY
COMPARABLE AREA UNDER THE CURVE.
HOWEVER, LATER I DEVELOPED
POLYGENIC RISK SCORE IN A CASE
CONTROL STUDY THAT IS IN PERU,
THIS IS PART OF THE STUDY,
CANCER GENOMIC STUDY.
CALCULATED AREA UNDER THE CURVE
WITH A PANEL THAT INCLUDED 178,
EXCLUDING THE SNPs DISCOVERED
IN HISPANIC LATINA GWAS, THEN WE
ADDED THEM AND WHAT WE SAW IN
BLUE IS THAT REALLY THE ADDING
THE TWO HISPANIC LATINA SPECIFIC
SNPs MADE AN IMPORTANT
DIFFERENCE IN THE POLYGENIC RISK
SCORE AVERAGE, AND ALSO IF WE
LOOKED TO INDIGENOUS AMERICAN
ANCESTRY, WE ALSO SEE INCREASING
AREA UNDER THE CURVE WITH HIGHER
INDIGENOUS AMERICAN ANCESTRY
WHICH WAS UNEXPECTED, AND BEFORE
WHEN WE LOOKED AT U.S. LATINAS
AND OTHER COHORTS WE HAD FOR THE
ORIGINAL PANEL DISEASE, WE ALSO
GROUPED BY QUARTILE, A BIG
DIFFERENCE THE HIGHEST QUARTILES
HERE ARE MORE THAN 80%, EVEN
MORE THAN 90% INDIGENOUS
AMERICAN ANCESTRY, IF YOU
REMEMBER FROM THE PREVIOUS SLIDE
THIS QUARTILE, THE TOP ONE IS
MORE THAN 55% INDIGENOUS, A LOT
MORE HETEROGENEOUS THAN THIS
GROUP HERE.
AND HERE THE AREA UNDER THE
CURVE IS THIS .64, WHICH IS --
AND .62, IN THE MORE EUROPEAN
QUARTILE.
PRS IN LATINA WOMEN IMPROVES
INDIGENOUS ANCESTRY SPECIFIC
ADDED, AND WE THINK THAT
DIFFERENT ENVIRONMENTAL ANCESTRY
BACKGROUNDS IN LATINA AMERICAN
MIGHT AFFECT PREDICTOR OF
RESPONSE OF PRS, BASED ON THE
PERUVIAN DATA IT'S NOT OBVIOUS
IN WHICH DIRECTION, AND COULD
BIVE THE PANELS MIGHT BE MORE IN
GROUPS OF HIGH INDIGENOUS
AMERICAN ANCESTRY.
WHAT WE ALSO LEARNED THROUGH THE
PROCESS, WE NEED A LOT MORE DATA
TO BE ABLE TO IDENTIFY MORE
POPULATION-SPECIFIC VARIANTS IN
A TRULY ADD VALUE TO THE PRS,
AND SO I'VE BEEN WORKING FOR
MORE THAN TWO YEARS NOW TOGETHER
WITH COLLABORATING WITH THE
MONTSERRAT AND CONFLUENCE STUDY
AT NCI, IT'S AN EFFORT TO FRAM
BRING TOGETHER ALL THE DIVERSE
COHORTS FOR ANALYSIS, AND I'M
TRYING TO FINISH CREATING THE
LATINA AMERICAN BREAST CANCER
CONSORTIUM, AND WE'VE BEEN
GROWING.
YOU CAN SEE THE MEMBERS OF THE
CONSORTIUM.
WE HAVE REPRESENTATION FROM 11
COUNTRIES, INCLUDING THE U.S.,
AND WE'RE INCLUDING STUDIES IN
LATIN AMERICA OF HISPANIC
LATINAS IN THE U.S., TOGETHER WE
WERE HOPING TO BE ABLE TO HAVE
DATA FOR 30,000 CASES, 30,000
CONTROLS, PART OF THE STUDIES
HAD DATA, ALSO WE'RE ABLE TO
GENOTYPE STUDIES THAT DIDN'T
HAVE THESE DATA.
AND BROAD AIMS FOR THE PROJECT
ARE TO DISCOVER MORE VARIANTS,
THROUGH GWAS, MAPPING, TWAS,
OTHER APPROACHES THAT MIGHT
LEVERAGE ANCESTRY HETEROGENEITY
OF THE LATIN AMERICAN
POPULATIONS, LEARN MORE ABOUT
BIOLOGY, IMPROVE PRS FOR
HISPANIC LATINAS, AND KEEP
BUILDING ANCESTRY AWARE PRS AS
WELL AS SUBTYPE SPECIFIC FOR THE
DIFFERENT SUBTYPES OF BREAST
CANCER, AND MAYBE MORE INTO THE
FUTURE DISCOVERING NEW INSIGHTS
INTO BIOLOGICAL MECHANISMS AND
ASSOCIATIONS WE FIND.
THAT'S ALL I HAVE TO PRESENT.
I WANT TO THANK PEOPLE IN MY LAB
AND ALL THE LABS THAT I WORKED
WITH ON THE GENOME WIDE
ASSOCIATION STUDIES IN LATINAS,
AND GRATEFUL TO THE MEMBERS FOR
BEING THERE AND STAYING HERE,
WORKING WITH ME TO HOPEFULLY
MAKE THIS HAPPEN.
WE THINK IT'S GOING TO BE A
GREAT RESOURCE.
THANK YOU.
>>GOOD AFTERNOON, I'M DR. JORGE
DUCONGE, BRIDGING THE GANT TO
REDUCE HEALTH CARE DISPARITIES.
LET ME GIVE SOME CONTEXT HERE,
EXPLAIN THE REASON WHY WE NEED
TO CONDUCT THIS STUDY
PARTICULARLY WHEN GWAS HAS
ALREADY BEEN (INDISCERNIBLE).
IT WAS CARRIED OUT IN
INDIVIDUALS OF MAINLY EUROPEAN
ANCESTRY, AND NO ONE OF THE
HISPANIC ORIGIN WAS INCLUDED.
SO, THE RATIONALE BEHIND THESE,
ADDRESSING THE LONGSTANDING
PROBLEM OF EXCLUDING MINORITIES
FROM CLINICAL RESEARCH, WHICH
ENTAILS GAP OF KNOWLEDGE ABOUT
PHARMACOGENOMICS OF THE
POPULATION IN PUERTO RICO.
THE VAST MAJORITY OF THESE
GENOMIC STUDIES HAS BEEN CON
CONDUCTED IN INDIVIDUALS OF
MOSTLY EUROPEAN ANCESTRY,
HISPANICS MAKE UP LESS THAN 1%
OF PARTICIPANTS IN THE STUDIES,
A HUGE DISPARITY THAT HASN'T
BEEN GETTING BETTER.
IN PRECISION MEDICINE IS GOING
TO BE EQUITABLE WE NEED TO FIX
LACK OF REPRESENTATION THAT
TENDS TO EXACERBATE THE HEALTH
CARE DISPARITIES ALREADY
EXISTING.
WHAT MADE CARIBBEAN HISPANICS
QUITE APPEALING GROUP FOR GWAS?
HERE ARE SOME FEATURES THAT CAN
EXPLAIN THAT.
FIRST, THEY SHOW HETEROGENEITY
AND HIGH LEVEL OF GENETIC
MIXTURE AMONG AFRICAN,
EUROPEANS, NATURE OF NATIVE
AMERICANS, AS A RESULT OF THE SO
CALLED COLONIAL EXCHANGE,
HISPANIC GENOMES REPRESENT
RECENT INNOVATION IN HUMAN
EVOLUTION, CONTAINING VARIANTS
OF HAPLOTYPES WHICH NEVER
EXISTED TOGETHER AND LINK DUE TO
THEIR NATURE.
IMPORTANT TO MENTION DIFFERENT
PATTERNS HAS AN IMPACT ON POWER
TO DETECT SIGNIFICANT SIGNALS.
THERE'S A HIGH LEVEL OF
STRATIFICATION IN PUERTO RICO,
BECAUSE ALLELE FREQUENCIES AND
EFFECT SIZE CAN DEFER
SUBSTANTIALLY BETWEEN THESE
POPULATIONS, SUCH STRATIFICATION
CAN LEAD TO FALSE OR SPURIOUS
ASSOCIATIONS OR MASK TRUE
ASSOCIATION IN PHARMACOGENOMIC
STUDIES BECOMING AN IMPORTANT
SOURCE OF BIAS IN GWAS, SO WE
NEED TO CONTROL FOR POPULATION
STRATIFICATION, AS POTENTIAL
CONFOUNDER IN THIS KIND OF STUDY
WHEN CONDUCTED IN ADMIX
POPULATIONS LIKE PERUVIAN
HISPANICS.
THIS ILLUSTRATES THE SIGNIFICANT
MIXTURE IN CARIBBEAN HISPANICS,
INFERRED ANCESTRY IS NOT
CATEGORICAL IN DIVERSE
POPULATIONS BUT SHOW VARYING
DEGREE OF PROPORTIONS AS YOU CAN
SEE OVER HERE.
SO, USE OF BIOLOGICAL CONSTRUCT
SUCH AS SELF-REPORTED RACE TO
DEFINE ORIGIN BASED ON SKIN
COLOR AS A PROXY IS INACCURATE,
TO CAPTURE THE COMPLEX DEGREE OF
MIXTURE IN POPULATIONS.
YOU CAN SEE THESE KALEIDOSCOPIC
COMBINATIONS, NATIVE AMERICAN,
WEST AFRICAN, YOUR APPEARANCE,
GIVE RISE TO REPERTOIRE OF
ALLELIC COME OF COMBINATIONS AND
HAPLOTYPE BLOODS WITH NOVEL
PATTERNS THAT ULTIMATELY AFFECT
ASSOCIATIONS IN PHARMACO GENETIC
STUDIES.
WE MAPPED FOUR INDIVIDUALS FROM
OUR STUDY AGAINST THE FIRST TWO
PRINCIPAL COMPONENTS FROM THE
GENOME.
WHEN THESE TWO SUBJECTS IN THE
BOTTOM WERE CLOSED TO EACH OTHER
ON THE PC PLOT, SUGGESTING
SIMILAR PORTIONS OF PARENTAL
ANCESTRY, ANCESTRY VARIES
GREATLY.
SO BY ACCOUNTING FOR THIS WE MAY
HAVE UNCOVERED NOVEL
ASSOCIATIONS.
THAT'S WHY WE NEEDS TO PLAN
ADJUSTED GWAS AS I WILL SHOW.
WITH ALL THAT IN MIND, WE
INITIALLY PERFORMED THE FIRST
GWAS OF A PHARMACOGENETIC TRAIT
IN CARIBBEAN HISPANIC, TO THIS
END WE USED A CUTOFF OF 230 TO
DISTINGUISH CONTROLS FROM CASES
THAT IS THOSE RESIS CAN'T TO
CLOPIDOGREL, REPRESENTING 33% OF
THE STUDY COHORT AS CAN BE SEEN
IN THIS HISTOGRAM.
THAT'S THREE OUT OF TEN PATIENTS
WHO DON'T RESPOND TO THIS
THERAPY.
WE ALSO CAME UP WITH THE
MANHATTAN PLOT THAT ILLUSTRATES
THE ASSOCIATION OF HITS ACROSS
THE GENOME AND CORRESPONDING
ASSOCIATIONS WITH AGGREGATION,
BUT PERFORMING THE GWAS ADJUSTED
BY COVARIATES WERE ABLE TO
IDENTIFY FOR THE FIRST TIME EVER
SOME LOCI SIGNIFICANTLY
ASSOCIATED WITH ACTIVITY, SOME
OF THEM ON CHROMOSOME 10 AS
SUSPECTED INCLUDING TWO HITS AT
G WAS SIGNIFICANCE, THERE'S A
CLUSTER OF SIX SNPs WHICH
SUGGESTED SIGNALS ON CHROMOSOME
10 SHOWING STRONG EVIDENCE FOR
NOMMAL ASSOCIATION WITH
CLOPIDOGREL RESPONSE.
WE FOUND NOVEL AFRICAN-RELATED
VARIANT AT CHROMOSOME X THAT
LEADS FOR THE VALIDATION.
SO WE PERFORMED A LOCAL ANCESTRY
ADJUSTED GWAS AND METAL ANALYSIS
TO BOOST POWER AND ESTIMATE
ANCESTRY-SPECIFIC EFFECTS.
INTERESTINGLY, THERE IS A
SIGNIFICANT SIGNAL IN CHROMOSOME
9 NOT SEEN BEFORE, WITH TWO
ENHANCER ELEMENTS, BASED ON THE
UCSC GENOME BROWSER INFORMATION,
SUMMARIZING THE SPECIFIC
ANCESTRY ANALYSIS OF
META-ANALYSIS, REPLICATED
SIGNIFICANT HITS FOR
RESPONSIVENESS IN OUR COHORT AND
IDENTIFIED NEW ANCESTRY-SPECIFIC
LOCI.
FINALLY, ASSOCIATION WITH
SNPs, ABLE TO DEVELOP
POLYGENIC RISK SCORE MODEL THAT
CORRELATED PRETTY WELL AND SHOWS
HIGH PREDICTIVE VALUE.
JUST KEEP IN MIND SHIFTING
ATTENTION TO THIS KIND OF
POLYGENIC PREDICTION MODELS MORE
ROBUST AND ACCURATE TO INFORM
ABOUT GENETIC RISK.
INTERESTINGLY, RESULTS WERE
SIGNIFICANT FOR ASSOCIATION
BETWEEN INCREASED NUMBER OF RISK
ALLELES IN THE POLYGENIC
RESISTANCE SCORE AND OCCURRENCE
OF CARDIOVASCULAR EVENTS
MACE, SHOWING THE ODDS OF
REPORTING A MACE IS EIGHT TIMES
MORE LIKELY TO BE EXPERIENCED IN
THOSE WITH AT LEAST THREE RACE
ALLELES.
POLYGENIC RISK SCORE APPROACH
IMPROVED PREDICTABILITY OF
RESPONSIVENESS HELPING WITH
ANTIPLATELET THERAPY IN THE
STUDY POPULATION.
WHAT WE HAVE LEARNED FROM OUR
STUDIES IN CARIBBEAN HISPANICS,
FIRST, PREDICTION POWER WILL
DEPENDS ON DATA FROM ALL ETHNIC
GROUPS REPRESENTING ETHNIC
DIVERSITY.
SECOND, HEALTH DISPARITIES COULD
BE EXACERBATED, RESIDUAL
STRATIFICATION TO REDOES BIAS.
GWAS IN MORE DIVERSE POPULATIONS
ARE NECESSARY TO REDUCE
INEQUITY.
MAXIMIZING DISCOVERY AND
ENHANCED GENERALIZABILITY.
META-ANALYSIS CAN HELP IDENTIFY
NEW ANCESTRY-SPECIFIC LOCI.
WE NEED TO DERIVE POLYGENIC RISK
SCORES WEIGHTED BY LOCAL
ANCESTRY TO OVERCOME THE
TRANSFERSABILITY ACROSS
DIFFERENT POPULATIONS.
CULTURAL AND ENVIRONMENTAL
DIFFERENCES ARE ALSO IMPORTANT,
IN ORDER TO MINIMIZE RISK OF
PHENOCONVERSIONS AND
GENE/DEVELOP INTERACTIONS.
PHENOTYPING MATTERED.
SO WE NEED TO PURSUE INTEGRATED
MULTIOMIC APPROACH AND
MULTI-SITE COLLABORATIVE EFFORTS
ARE THE KEY.
I WILL STOP HERE.
THANK YOU VERY MUCH.
>>OKAY.
SO, WE CAN HAVE ALL THE SPEAKERS
TURN ON THEIR CAMERAS, AND WE
CAN GET STARTED WITH THE Q&A.
DO YOU WANT TOP SAY SOMETHING?
>>NO, THAT'S JUST
ADMINISTRATIVE SETUP.
SINCE I INTRODUCED THE SESSION.
>>GOT IT.
OKAY.
SO, THE SPEAKERS, PLEASE TURN ON
YOUR CAMERAS.
I WANT TO INTRODUCE, I'M RINA
DAS, MODERATING.
THANK YOU FOR A GREAT
PRESENTATION.
IT'S REALLY -- I LEARNED ABOUT
HOW GENOMIC DATA IS IMPORTANT
AND GENOMIC DIVERSITY IS
IMPORTANT.
SO, FOR THIS SESSION I'D LIKE
THIS TO BE MORE INTERACTIVE
CONVERSATION, SO FEEL FREE TO
CHIME IN IF YOU HAVE SOMETHING
TO SHARE DURING THESE QUESTIONS.
I'LL START WITH DR. MARINO.
THANK YOU FOR YOUR PRESENTATION
ON THE GENOMIC DIVERSITY AND THE
CONSORTIUM, THAT LOOKS REALLY
IMPRESSIVE.
CAN YOU SHARE WHAT HAVE BEEN
SOME LESSONS LEARNED ABOUT
ESTABLISHING THIS HUGE
CONSORTIUM, ESPECIALLY LIKE WHAT
ARE THE NECESSARY THINGS IN
TERMS OF INFRASTRUCTURE,
COLLABORATION, TRAINING, ET
CETERA?
>>THANK YOU, RINA.
I WOULD LIKE TO SAY ONE OF THE
IMPORTANT THINGS THROUGHOUT THIS
EXPERIENCE IS TRY TO BUILD
TRUST.
TRUST IS VERY IMPORTANT BECAUSE
WE WANT TO DO CAPACITY BUILDING
IN LATIN AMERICA.
I THINK THAT'S IMPORTANT.
SOMETIMES PROJECTS INVOLVE
SENDING SAMPLES TO THE U.S. AND
PEOPLE IN LATIN AMERICA END UP
JUST SENDING STUFF AS OPPOSED TO
BUILDING THE CAPACITY THERE.
NOW, WHAT WE WOULD LIKE TO SEE
IS REALLY A LOT OF NATIONAL
EFFORTS, NOT ONLY IN COLOMBIA
BUT THROUGHOUT LATIN AMERICA,
WHERE WE CAN BUILD BIOBANKS, SO
WE'RE NOT ONLY INTERESTED IN
ANCESTRY BUT ALSO ALL ASPECTS OF
HEALTH.
SO, WE HAVE A REALLY NICE EFFORT
HERE, IN THE U.S., THE "ALL OF
US" PROGRAM.
WE ALSO HAVE THE GOLD STANDARD
FOR BIOBANKS, THE U.K. BIOBANK.
SO WE WOULD LIKE TO CREATE OR
TRY TO HELP PEOPLE EITHER LOCAL
GOVERNMENTS OR THE U.S. TO HELP
FUND THESE TYPE OF ACTIVITIES.
SO BUILDING TRUST IS ONE
IMPORTANT THING, BUT ALSO
ANOTHER THAT IS IMPORTANT IS TRY
TO ORGANIZE PEOPLE, RIGHT?
AND THAT'S HARD IN LATIN
AMERICA.
IT'S HARD TO PUT EVERYBODY ON
THE SAME PAGE.
SO, BUT THAT'S WHAT WE ARE
TRYING TO DO WITH THIS PROJECT,
WITH CODIGO.
>>THANK YOU SO MUCH.
THAT WAS REALLY VERY THOUGHTFUL.
I KNOW ALL THE OTHER SPEAKERS
HAVE EXPERIENCE IN BUILDING
THESE CONSORTIUMS, AND FEEL FREE
TO JUMP IN IF YOU HAVE ANYTHING
ELSE TO ADD TO THIS DR. DR.
LOPERA, THANK YOU.
ARE THERE CLINICAL SIGNS OR
SYMPTOMS OF MCI, IN EARLY
DEMENTIA YOU SHOWED PRE-CLINICAL
AND CLINICAL PHASE, CAN YOU TELL
WHO IS GOING TO VERY MANY
DEMENTIA LATER IN LIFE.
>>THANK YOU, RINA, FOR THE
OPPORTUNITY TO SHARE THIS TOPIC
WITH YOU.
THE SYMPTOMS AND SIGNS OF MCI IN
EARLY ONSET DEMENTIA COMES BY
GENES OF CAUSALITY, VERY SIMILAR
TO THE SYMPTOMS AND SIGNS IN
IMPAIRMENT IN LATE ONSET IN
SPORADIC DISEASE, THE DIFFERENCE
IS ONLY SINCE THE SYMPTOMS ARE
(INDISCERNIBLE) IN GENERAL THE
PRINCIPAL SYMPTOMS ARE MEMORY
LOSS, RECENT MEMORY, THE SAME IN
LATE AND EARLY ONSET.
AND THERE ARE MORE OR LESS 10%
OF THE MEMBERS OF THE FAMILY
WITH EARLY ONSET ALZHEIMER'S
DISEASE, WHO START NOT WITH
MEMORY PROBLEMS BUT WITH OTHER
TYPICAL SIGNS OR SYMPTOMS,
PARKINSON, BEHAVIORAL SYMPTOMS,
BUT IN GENERAL MOST OF THEM HAVE
MEMORY LOSS, AS OCCURS IN LATE
ONSET ALZHEIMER'S DISEASE.
>>THANK YOU.
THANK YOU.
I THINK YOUR TALK ON THE
RESISTANCE TO ALZHEIMER'S WAS
VERY INTERESTING, THAT DATA THAT
YOU PRESENTED, SO HOW DOES THIS
RESISTANCE TO ALZHEIMER'S
MANIFEST WHEN YOU HAVE THE RISK
GENOTYPE?
>>THE RESISTANCE FOR
ALZHEIMER'S, WE NEED TO LOOK
THAT IN PEOPLE WHO HAVE FAMILIAL
FORM OF EARLY ONSET ALZHEIMER'S
DISEASE WITH AUTOSOMAL EVENTS,
SYMPTOMS VERY LATE, HAVING GENE
OF CAUSALITY IN THE FAMILIES.
THEN THE KEY IS TO LOOK FOR
PEOPLE WHO START SYMPTOMS VERY
LATE, OR PEOPLE WHO DEVELOP, WHO
DON'T DEVELOP THE SYMPTOMS, EVEN
IN LATE WHEN THEY ARE VERY
AGING, THE DISEASE MOST
IMPORTANT KEY TO DISCOVER PEOPLE
WITH RESISTANCE TO ALZHEIMER'S
DISEASE.
>>THANK YOU.
THANK YOU.
I'LL COME BACK TO YOU AGAIN, LET
ME MOVE ON TO DR. AGUILAR
SALINAS.
THANK YOU FOR YOUR PRESENTATION
ON THE GENOMICS OF DIABETES
AMONGST MEXICANS.
CLINICAL CHARACTERIZATION OF
THIS DATA DRIVEN SUBGROUPS THAT
YOU'VE IDENTIFIED IN MEXICO, WAS
THAT BASED ON LIKE A
CROSS-SECTIONAL SURVEY OR DO YOU
HAVE ANY LONGITUDINAL CLINICAL
DATA?
>>THANK YOU FOR THE QUESTION.
I EXPRESS MY GRATITUDE, TO YOU,
FOR LETTING ME COUNSEL ON THIS
TOPIC IN THE SEMINAR.
PHENOTYPES USING CROSS-SECTIONAL
DATA, ALSO VALIDATED IN A
POPULATION-BASED NATIONWIDE
SURVEY AND LONGITUDINAL
FOLLOW-UP OF INDIVIDUALS IN
WHICH 300 OF THEM DEVELOPED
INCIDENT DIABETES, THESE
CLUSTERS NOT ONLY FOR THE
IDENTIFICATION OF RISK FOR THE
CLINICAL COURSE OF THE DISEASE,
PREVIOUS PHENOTYPES THAT ARE
ASSOCIATED WITH METABOLIC
DISORDERS AND EVOLUTION OF TYPE
2 DIABETES.
>>OKAY.
I HAVE ANOTHER QUESTION IN TERMS
OF HOW THESE SUBPHENOTYPE DATA
THAT CAN BE USED FOR PRECISION
MEDICINE AND IN CLINICAL
PRACTICE, CAN YOU SHARE YOUR
THOUGHTS ON THAT?
>>YES, WE DO THINK IT'S MORE --
IN WHICH CLINICAL DATA ARE
INCLUDED AND THEY PROVIDE WHICH
PHENOTYPES IS PREVALENT FORM IN
INDIVIDUAL CASES.
SINCE GENOMICS ARE STILL
DIFFICULT TO TRANSLATE IN
CLINICAL PRACTICE, WE USE MAINLY
CLINICAL DATA, AND WE'RE NOW
WORKING TO ADD THE GENOMIC
INFORMATION TO THIS CLINICAL AND
BIOCHEMICAL DATA TO HAVE A VERY
PRECISION, ESPECIALLY FOR THE
CHRONIC INDICATIONS, NOW THE
GENOMIC DATA HAS BEEN IDENTIFIED
(INDISCERNIBLE) THE PHYSIOLOGIC
TYPE 2 DIABETES, TO TRANSCEND IN
CLINICAL PRACTICE, NEED TO USE
ALL THE AVAILABLE INFORMATION,
GENOMIC, CLINICAL, AND
ELECTRONIC MEDICAL RECORDS, TO
IMPROVE THE CARE OF DIABETIC
PATIENTS IN MEXICO.
>>THANK YOU.
THANK YOU FOR SHARING YOUR
THOUGHTS.
LET ME MOVE TO DR. FEJERMAN.
VERY INTERESTING DATA ON THIS
AMERICAN INDIAN ANCESTRY
MARKERS, AND HOW THEY ARE
ASSOCIATED WITH LOWER RISK OF
BREAST CANCER, SO ARE THESE
AMERICAN INDIAN ANCESTRY MARKERS
ASSOCIATED WITH SPECIFIC BREAST
CANCER PATHOLOGY OR CLINICAL
MANIFESTATION OF THE DISEASE?
CAN YOU COMMENT ON THAT?
>>YES, OF COURSE.
THANK YOU VERY MUCH FOR HAVING
ME HERE TODAY.
WE ONLY HAVE TEN MINUTES SO I
CUT OFF A LOT OF THE INFORMATION
BUT YES, LOOKING, PUBLISHED
RECENTLY A PAPER, LOOKED AT
ASSOCIATION OF THE POLYMORPHISM
PARTICULAR TO SUBTYPES AND WE
CONSISTENTLY SEE YOU'RE LESS
LIKELY TO DEVELOP BREAST CANCER
IF HAVE YOU POLYMORPHISM, IF YOU
HAVE IT, IT'S MORE LIKELY YOU'LL
HAVE ESTROGEN RECEPTOR TUMORS,
MEANING MOSTLY YOU'RE PROTECTED,
LOOKS LIKE YOU'RE PROTECTED FROM
DEVELOPING HER-2 POSITIVE
DISEASE.
>>WOW.
SO, SNPs ASSOCIATED WITH
BREAST CANCER IN LATIN AMERICAN
WOMAN HAVE THEY BEEN DESCRIBED
IN EUROPEAN COHORTS?
>>NO, I'M PREACHING TO THE
CHOIR HERE BUT THIS IS WHAT
WE'VE BEEN SAYING FOR MANY, MANY
YEARS, IS WE COULD HAVE NOT
DISCOVERED POLYMORPHISMS,
FINDING THE SAME REGION, YOU
KNOW, DOING THESE RIGHT NOW,
FINDING OUR POLYMORPHISMS, 6Q25,
ONLY SEEN IN LATINAS WITH
INDIGENOUS ANCESTRY, FREQUENCY
IN THE SAMPLES WE LOOKED SO FAR
FROM EUROPEAN AND AFRICAN
ANCESTRY, THE PROTECTIVE
POLYMORPHISM IS PRESENT AT A
VERY LOW FREQUENCY IN CHINESE,
IN SOME ASIAN SUBGROUPS, AND IT
MAKES TOTAL SENSE IF YOU THINK
ABOUT A WAY AMERICAS WERE
POPULATED, PROBABLY ANCIENT
SOURCE POPULATION THAT MIGRATES
THROUGH THE STRAIT INTO THE
AMERICAS BRINGING THIS VARIANT
AND THEN MAYBE BY CHANCE OR WE
DON'T KNOW YET WHY BUT
INCREASING FREQUENCY ONCE IN THE
LATINA AMERICAN CONTINENT.
>>ANY OTHER COMMENTS ON THIS
TOPIC, HOW IMPORTANT IT IS TO
HAVE THESE UNIQUE POPULATION
COHORT STUDIES, ANY OTHER
THOUGHTS?
BECAUSE I KNOW MOST OF OUR
GENETIC DATA IS BASED ON DATA
FROM EUROPEAN AMERICAN
POPULATION, AND WE WOULD MISS
SOME OF THESE RICH INFORMATION.
ANY THOUGHTS ON HOW IMPORTANT
THIS KIND OF STUDY IS?
>>I THINK THAT IT'S VERY
IMPORTANT TO HIGHLIGHT THE WAY
LATIN AMERICA WILL ENRICH THE
EFFORTS TO REPRESENT THE
VARIABILITY WITH THE DISORDERS,
THE MOST RECENT GWAS, MORE
FINDINGS IN UNREPRESENTED GROUPS
RATHER THAN GROUPS IN THE NORMAL
SAMPLES.
SO, TO WORK TOGETHER WITH
INTERNATIONAL CONSORTIA IS NOT
JUST CHIPPING, IT'S TO PROVIDE
IDEAS TO USE THE CLINICAL DATA
THAT WE HAVE TO INTERPOLATE
GENETIC AND ADDED VALUE OF OUR
POPULATIONS FOR THE WHOLE GLOBAL
CONSORTIA.
>>THANK YOU.
DR. MARINO?
YOU ARE ON MUTE.
>>I'M SORRY.
YEAH, I WAS SAYING, THANK YOU,
FOR YOUR TALK, SHE PRESENTED
SOMETHING EVER GREAT IMPORTANCE,
THAT IS WHY SHOULD WE AS NIH
SUPPORT RESEARCH IN LATIN
AMERICA?
RIGHT? WE HAVE A CLEAR EXAMPLE
FOR WHY WE SHOULD DO THAT.
THAT WAS PRESENTED BY LAURA.
THAT IS WE NEED TO UNDERSTAND
THE GENETIC VARIATION THAT IS
PRESENT IN LATINOS, THAT CAN
BENEFIT LATINOS IN LATIN AMERICA
BUT ALSO IN THE U.S. AND ALSO
PEOPLE FROM EUROPEAN ANCESTRY,
RIGHT?
WE HAVE SOME PROTECTIVE ALLELES
THAT MAY EXPLAIN WHY WE HAVE
LET'S SAY BETTER HEALTH OUTCOMES
IN THE END.
ANOTHER POINT THAT IS IMPORTANT
TO CONSIDER IS PHARMACOGENOMICS
PART, AND THIS IS RELATED TO
CLINICAL TRIALS, SO I WAS
WONDERING IF OTHERS HAVE
COMMENTS ON THIS.
>>MAYBE WE CAN COME BACK.
LAURA, DID YOU WANT TO ADD
ANYTHING TO THIS COMMENT,
QUESTION?
>>YEAH, I JUST WANTED TO
COMPLIMENT WHAT EVERYONE SAID,
MAYBE HIGHLIGHT THE FACT THAT
WORKING WITH DIVERSE, ESPECIALLY
LATIN AMERICANS IS SO RICH IN
TERMS OF ANCESTRIES.
WE DON'T KNOW AT THIS POINT, WE
DON'T KNOW THE EXTENT OF WHAT
ARE DIFFERENCE OR SIMILARITIES
WITH OTHER GROUPS BECAUSE WE
HAVEN'T HAD THE CHANCE AND THE
LARGE SAMPLE SIZES TO REALLY SEE
HOW COMPARABLE AND DIFFERENT
THINGS ARE.
FOR BREAST CANCER AND OTHER
DISEASES.
AND I THINK SOMETIMES PEOPLE,
WHENEVER WE SHOW THAT EITHER
THERE'S A BENEFICIAL EFFECT OR
SIMILAR TO WHAT YOU SEE IN THE
EUROPEAN STUDIES, PEOPLE USE
THAT AS THE REASON FOR NOT
INVESTING DIVERSITY DATASETS,
AND I THINK THAT'S A MISTAKE.
I THINK WE DON'T KNOW YET
BECAUSE WE DON'T HAVE THE RIGHT
SAMPLE SIZE AND SECOND AT LEAST
WE KNOW THERE ARE SOME
DIFFERENCE, EVEN IF WE COULDN'T
FIND MANY BECAUSE OF LIMITATIONS
IN POWER.
YEAH, THAT I WANTED TO MAKE THAT
POINT.
>>THANK YOU.
DR. DUCONGE, DO YOU WANT TO ADD
ANYTHING?
>>QUICKLY, OUT OF CURIOSITY, I
WANT TO KNOW OUR OPINION ABOUT
NATIVE AMERICAN ANCESTRY MARKER
BECAUSE IN MY EXPERIENCE, IT'S
HARD TO FIND MARKERS, ANCESTRY
MARKERS, THAT CAN CAPTURE THE
NATIVE AMERICAN COMPONENT SO I
JUST WANT TO KNOW IF SHE HAS ANY
RECOMMENDATION BECAUSE I SAW IN
HER PRESENTATION THAT NATIVE
AMERICAN COMPONENTS ANCESTRY
COMBINES, RELEVANT FOR RISK
SCORE SHE DEVELOPED.
>>YEAH, IF YOU TAKE ANY
POPULATION FROM LATIN AMERICA,
WE MAKE SURE AND YOU HAVE
GENOME-WIDE DATA, NOW
SEQUENCING DATA, CAN YOU FIND A
LOT OF UNIQUE POLYMORPHISMS ONLY
SEEN IN THE INDIGENOUS AMERICAN
COMPONENT.
YOU KNOW, YOU CAN CHOOSE TO ONLY
LOOK AT THOSE IN ASSOCIATION
WITH DISEASE, I DON'T THINK WE
NEED TO DO THAT.
I THINK THOSE ASSOCIATIONS WILL
COME UP EVEN IF YOU DO ANALYSIS
INCLUDING ALL POLYMORPHISMS,
SOME ARE DRAMATICALLY DIFFERENT
LIKE THE ONE WE FOUND FOR BREAST
CANCER, BUT THERE'S OTHER
POLYMORPHISMS THAT MIGHT BE JUST
THE DIFFERENCE IN ALLELE
FREQUENCY BUT THAT MIGHT MAKE A
DIFFERENCE IN THE PRS OR OTHER
CLINICAL USE OF THIS
INFORMATION.
>>THANK YOU.
>>WE HAVE DEVELOPED A PANEL OF
102 MARKERS THAT SEPARATE THE
NATIVE AMERICAN COMPONENT IN
MEXICANS FROM THE OTHER ETHNIC
GROUPS, AND IT'S CRITICAL TO
CONTROL VARIABILITY,
MULTIVARIATE ANALYSIS, AND THE
SAME WE FOUND IN OUR DIABETES
HAPLOTYPE, THE FREQUENCY OF THIS
HAPLOTYPE IS COMPLETELY ABSENT
IN BLACKS.
IT'S ONLY ABOUT 1% IN EUROPEANS,
ONLY 5%.
AND THE SAME HAPPENS FOR THE
OTHERS.
ONE IS A MAJOR CAUSE OF LOWER
SERUM CHOLESTEROL, THE NUMBERS
OF METABOLIC DISORDERS IS LARGE
ENOUGH TO ANSWER THE QUESTIONS,
FOR EXAMPLE, ADDING NATIVE
AMERICAN COMPONENT, POLYGENIC
RISK SCORE, PREDICTIVE VALUE,
THE BEST WAY IS TO GROUP ALL THE
ETHNIC VARIABLES, TO THE
PROGNOSIS OR DIAGNOSIS IN THE
INFORMATION THAT WE HAVE
ALREADY.
>>THANK YOU.
DR. FEJERMAN, A QUICK COMMENT
AND WE WANT TO MOVE TO OTHER
QUESTIONS.
>>FOR JORGE'S QUESTION, THERE'S
BEEN 106 PANEL, YOU KNOW, THAT
WAS DEVELOPED MORE THAN I THINK
15 YEARS AGO, THAT CAN CLEARLY
IDENTIFY INDIGENOUS EUROPEAN AND
AFRICAN ANCESTRY IN ADMIX
HISPANIC LATINOS BUT WE'RE
MOVING BEYOND THAT TO USING
GENOME WIDE DATA WHICH CAN
EASILY BE PRUNED AND USED TO
IDENTIFY CONTINENTAL COMPONENTS.
IN OUR DATA WE CAN IDENTIFY THE
NORTHERN INDIGENOUS AMERICAN
COMPONENT AND DISTINGUISH THAT
FROM THE SOUTHERN, IT COMES UP
IN THE PCAS AND ANCESTRY
ESTIMATES, SO IF YOU WANT TO
TALK MORE I'M HAPPY TO.
>>THANK YOU.
THANK YOU FOR THE SUGGESTION.
I'D LIKE TO MOVE TO DR. DUCONGE.
THANK YOU FOR YOUR PRESENTATION
ON THE PHARMACOGENOMICS.
SO, IT'S REALLY INTRIGUING, HOW
DO THESE FINDINGS ON THE
POLYGENIC RISK SCORE FROM YOUR
RESEARCH TRANSLATE INTO CLINICAL
CARE?
I MEAN, IS THERE A WAY TO
RECOMMEND FOR GENETIC TESTING
BEFORE YOU PRESCRIBE DRUGS
BECAUSE ANTICOAGULANTS WITH USED
PRETTY WIDELY, SO, AND THEN
WOULD YOU ADJUST FOR THE DOSE OR
DO YOU HAVE ANY COMMENT ON THAT?
>>YEAH, ABSOLUTELY.
THANK YOU SO MUCH, RINA.
FIRST OF ALL, I'D LIKE TO
EXPRESS MY GRATITUDE FOR THE
SYMPOSIUM, VERY, YOU KNOW,
HONORED AND EXCITED TO BE HERE.
THANK YOU FOR THAT.
IN MY PRESENTATION, WE DEVELOPED
POLYGENIC RISK SCORE MODEL TO
PREDICT RESPONSE BASED ON OUR
MAJOR FINDINGS, FROM THE GWAS,
AND THE OTHER SUBSEQUENT
ANALYSES.
THE NEXT LOGICAL STEP WAS TO
FIND OUT WHETHER THIS SCORE IS
ABLE TO HELP CARDIOLOGIST, THE
BURDEN OF CARDIOVASCULAR EVENTS
IN INDEPENDENT COHORT OF
CARIBBEAN HISPANIC PATIENTS ON
CURRENT.
WE'RE GENOTYPING, WE'RE
RECOMMENDING GENOTYPING PATIENTS
TO IDENTIFY GENETIC MARKERS PART
OF THE POLYGENIC RISK SCORE, AND
WE'RE CURRENTLY CONDUCTING
PROSPECTIVE CLINICAL STUDY TO
IMPLEMENT OUR PHARMACOGENOMIC
ALGORITHM TO GUIDE ANTIPLATELET
THERAPY IN CARIBBEAN HISPANICS,
THIS IS A COHORT STUDY, WITH
FOLLOW-UP PERIOD OF SIX MONTHS,
SO FAR WE HAVE 150 PATIENTS,
ENROLLED IN THE GROUP, ANOTHER
132 IN THE GROUP BY GENETICS.
THE IDEA IS TO CALCULATE RISK
SCORE, IF THE SCORE IS ABOVE 2,
PATIENTS ARE ESCALATED TO
ALTERNATIVE, AND HYPOTHESIS IS
THOSE IN GENETIC WILL SHOW
REDUCED INCIDENCE RATE OF MACE,
WHEN COMPARED TO STANDARD OF
CARE, THIS IS ONGOING STUDY,
PRELIMINARILY WE CAME UP WITH
SIGNIFICANT 4% REDUCTION
REPORTED ADVERSE EVENTS WITH
RATIO OF 2, IN THE GENETIC GROUP
VERSUS STANDARD OF CARE, WE'RE
VERY EXCITED AND ENTHUSIASTIC
ABOUT THESE RESULTS SO FAR.
THE GOAL IS TO USE CLINICAL
DECISION SUPPORT TOOL, THE WAY
WE ARE TRANSLATING RESULTS OF
THE FINDINGS TO COMMUNICATE
RECOMMENDATIONS TO THE
CLINICIANS, FOR EACH PATIENTS,
REAL WORLD SCENARIO.
KIND OF, YOU KNOW, TRANSLATE
GENOMICS FINDINGS IN MEDICAL
BENEFIT FOR OUR PATIENTS
EXPECTING TO REDUCE GAP BETWEEN
CURRENT PRACTICE AND ADOPTION OF
PRECISION MEDICINE PARADIGM, IN
PUERTO RICO AND LATINO
POPULATION IN GENERAL.
>>THANK YOU SO MUCH FOR GIVING
YOU THIS EXAMPLE.
I'M REALLY EXCITED TO SEE THAT
THERE IS HOPE THAT ALL GENOMIC
RESEARCH WILL BE EVENTUALLY
GETTING INTO CLINICAL CARE.
I WANT TO EXTEND THAT SAME
QUESTION TO THE PANELISTS.
DR. MARINO, DO YOU HAVE ANY
PLANS OF INTEGRATING THIS
RESEARCH DATA INTO CLINICAL
CARE?
HOW DO YOU SEE THE GENOMIC DATA
BEING SHARED FOR ADDRESSING
HEALTH DISPARITIES?
>>THANK YOU FOR THAT QUESTION,
RINA.
I THINK, FIRST, PROBABLY THE
FASTEST WAY TO GET THERE IS
PHARMACOGENOMICS AT THE
POPULATION LEVEL.
AND THE REASON FOR THAT IS
BECAUSE IT IS RELATIVELY EASY TO
IDENTIFY SOME ALLELES THAT ARE
IN THE POPULATION IN LATIN
AMERICA, THAT CAN BE IDENTIFIED
TO HOW PEOPLE METABOLIZE DRUGS,
RIGHT?
AND THIS IS IMPORTANT BECAUSE A
NUMBER OF CLINICAL TRIALS ARE
USUALLY FOCUSED ON POPULATIONS
FROM EUROPEAN DESCENT, RIGHT?
SO WE HAVE A NUMBER OF DRUGS
THAT MAY HAVE -- THAT ARE NOT AS
EFFECTIVE WHEN YOU HAVE THEM IN
MINORITY POPULATIONS SO I GUESS
THAT'S ONE OF THE THINGS WE CAN
TACKLE QUICKLY.
ANOTHER IS CONCEPT OF BIOBANKS,
AND I WAS MENTIONING THIS AT THE
BEGINNING, IS SOMETHING THAT NOT
ONLY CAN BENEFIT A CERTAIN
REGIONS OF LATIN AMERICA, ALSO
LATINOS HERE IN THE U.S. AND
PEOPLE FROM EUROPEAN DESCENT AS
WELL, RIGHT?
I THINK IT IS IMPORTANT TO TRY
TO TALK HERE ABOUT THE NEED TO
FUND EFFORTS IN LATIN AMERICA
THAT DEAL WITH GENETIC RESEARCH
AND CHARACTERIZATION, RIGHT?
BIOBANK CONSTRUCTION AND SO ON.
SO, THOSE ARE MY TWO CENTS FOR
THAT QUESTION.
>>THANK YOU.
>>I DON'T KNOW IF OTHERS HAVE
SOMETHING TO ADD.
>>YEAH, I REALLY WANT TO OPEN
THIS FOR ALL THE PANELISTS TO
GIVE US SOME OF YOUR FEEDBACK.
DR. LOPERA, HOW ARE ALL THESE
SCREENINGS FOR THE GENOTYPIC AND
PHENOTYPIC STUDIES CAN BE STICKY
INTEGRATED INTO CLINICAL CARE,
DO YOU HAVE ANY RECOMMENDATION
AND ESPECIALLY FOR IDENTIFYING
RESISTANT GENES TO ALZHEIMER'S
DISEASE.
>>YES, IN MY LAB HERE IN
COLOMBIA, WE ARE ABLE TO
PHENOTYPE, TO LOOK FOR THE
PHENOTYPE FOR THE MUTATION, THAT
WE HAVE DISCOVERED HERE.
FOR INSTANCE, IN THE LAST THREE
DECADES, WE WERE THINKING THAT
WE HAVE ONLY ONE MUTATION, BUT
IN THE LAST YEAR WHEN WE STARTED
THE CLINICAL TRIAL, WE DID A
CAMPAIGN IN THE COUNTRY LOOKING
FOR PEOPLE HAVING EARLY ONSET
DEMENTIA, AND WE DID
ADVERTISEMENT IN THE TELEVISION,
RADIO, NEWSPAPER, LOOKING FOR
PEOPLE HAVING EARLY ONSET
DEMENTIA BEFORE 60 YEARS OLD AND
RECEIVED 1,000 BLOOD SAMPLES
FROM ALL THE COUNTRY.
AND WE FOUND THAT ONLY EIGHT OF
THEM HAVE THE MUTATION, OF
COURSE WE INVITE THEM TO
PARTICIPATE IN THE CLINICAL
TRIAL, THE QUESTION WAS WHAT
HAPPENED WITH THE OTHERS, WE DID
A TOTAL GENOME, IN THE LAB AT
THE CALIFORNIA UNIVERSITY, IN
SANTA BARBARA, SAND WE FOUND
THAT WE HAVE 12 MORE DIFFERENT,
IN COLOMBIA, THAN TODAY WE HAVE
NINE MUTATIONS, EUROPEAN ORIGIN,
THREE NATIVE, ONE AFRICAN
MUTATION.
NOW WE SEE THAT WE HAVE MANY
FAMILIES AFFECTED, WITH
DIFFERENT MUTATION IN GENE, NOW
WE ARE ABLE TO RUN THIS MUTATION
IN OUR LAB BUT OF COURSE IF WE
LIKE TO LOOK FOR MORE GENETIC
FACTORS THEN WE NEED TO DO
COLLABORATION WITH FOREIGN LABS,
AND WE DO THAT WITH OTHER
COLLABORATORS IN THE ITS.
>>THANK YOU.
THANK YOU FOR THOSE COMMENTS.
DR. AGUILAR SALINAS, DO YOU HAVE
THOUGHTS ON HOW THESE DATA ON
THESE SUBPHENOTYPES AND HOW CAN
THEY BE USED IN PRECISION
MEDICINE AND HOW CAN WE
TRANSLATE INTO CLINICAL
PRACTICE?
>>IT'S CRITICAL TO LINK
ELECTRONIC MEDICAL RECORDS
INFORMATION AND COHORT-BASED
LONGITUDINAL DATA WITH GENOMIC
INFORMATION, FOR EXAMPLE FOR
METABOLIC DISORDERS IN
HETEROGENEOUS CONDITION, NOT
EVERYBODY DEVELOPS THE SAME KIND
OF FINAL COMPLICATIONS.
AND IT'S INDISPENSABLE THAT TO
BUILD MULTI-NATIONAL COHORTS,
THAT INFORMATION OF THOSE
CLINICAL AND GENOMIC DATA, FOR
THE PROGNOSTICS OF THE PATIENTS,
EXAMPLE IN LATIN AMERICA WE HAVE
AN INCREASED SUSCEPTIBILITY FOR
DIABETIC RETINOPATHY, AND EARLY
ONSET TYPE 2 DIABETES, THAT
NOBODY WILL ANSWER THESE KIND OF
QUESTIONS IN EUROPE OR U.S.
BECAUSE THEY DON'T HAVE THESE
KINDS OF PATIENTS.
SO MOST OF ALL THESE COHORTS TO
HAVE GENOMIC AND CLINICAL DATA,
AS LEONARDO SAID, IS VERY
IMPORTANT TO IDENTIFY, PERHAPS
AS A RESULT OF MEETINGS,
BIOBANKS, COHORTS, ENOUGH
INFORMATION ABOUT OUTCOMES TO
MAKE THIS WHOLE IDEA POSSIBLE TO
IMPROVE HEALTH OF LATIN
AMERICANS.
>> THANK YOU FOR YOUR
THOUGHTFUL COMMENTS.
DR. FEJERMAN, LET ME POSE A
QUESTION TO YOU.
YOU MENTIONED ABOUT PRECISION
PREVENTION.
THAT'S A GREAT AREA.
HOW DO YOU ENVISION RESEARCH
TRANSLATED INTO CLINICAL CARE
AND INTO COME CLINICAL DECISION
MAKING, HOW PATIENTS ARE GOING
TO MAKE A DECISION BASED ON
GENOMIC INFORMATION?
>>THAT'S A GREAT QUESTION,
THANK YOU.
IT'S ALREADY HAPPENING.
MYRIAD INCORPORATED IN THE PRS
PANEL AND GIVE RESULTS DIRECT TO
CONSUMER RESULTS.
THERE'S A QUESTION IN MY MIND
HOW THIS IS GOING TO COME IN
PLAY FOR THOSE WITH LESS
RESOURCES WHO ARE -- THE INSURE
MIGHT NOT PAY FOR SCREENING
PANELS, YOU KNOW, BEFORE USUALLY
MEDICAL, MEDICARE, ESPECIALLY
FOR PRECISION, THEY COVER WHEN
YOU HAVE BREAST CANCER, HOW IT
WORKS, BUT NOT IF YOU DON'T HAVE
THE DISEASE IS NOT SO EASY TO
GET THE INSURANCE TO COVER
TESTING, FOR EXAMPLE; IT'S
EASIER TO INCORPORATE
INFORMATION, I DON'T THINK IT'S
EASY TO MAKE SURE EVERYONE HAS
ACCESS TO TESTS THAT CAN
NF-kappaB ABOUT -- THAT CAN
INFORM ABOUT THE RISK, A PROBLEM
IN THE U.S., A PROBLEM IN LATIN
AMERICA WHERE THEY CAN BENEFIT
FROM THE PRS USEFUL FOR
PARTICULAR POPULATIONS.
THE WAY I'M GOING TO WORK ON
THIS, ADVOCATE, WORK WITH OTHER
PEOPLE WHO HAVE MORE EXPERIENCE,
EVEN ADVOCATING, AND TRYING TO
CHANGE POLICIES, SO EVERYONE CAN
ACCESS PRECISION PREVENTION
GENETIC TESTING AND ACCESS TO
PREVENTIVE TREATMENT LIKE BREAST
CANCER WOULD BE CHEMOPREVENTION
OR PREVENT THE MASTECTOMY,
RECONSTRUCTION, WHATEVER THE
PARTICIPANT DECIDES TO DO.
>>THIS IS A REALLY IMPORTANT
QUESTION, AND FOR THE PANELISTS,
BECAUSE WE'RE THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES, AND WE KNOW
TO ADDRESS DISPARITIES, ACCESS
TO THESE SCIENTIFIC ADVANCES IS
SO IMPORTANT AND HOW DO YOU SEE
THIS HAPPENING?
IS THIS -- ARE THERE ANY
EXAMPLES WHERE WE COULD LEARN
FROM?
ANY THOUGHTS FROM THE PANELISTS?
>>I CAN SAY I KNOW HERE IN THE
U.S. THERE'S A LOT OF MOVEMENT
AROUND ENSURING EVERYONE CAN
ACCESS PRECISION PREVENTION
APPROACHES.
SIMILAR TO TREATMENT.
I KNOW THERE'S INVESTIGATORS,
IMPLEMENTING NEW APPROACHES TO
FACILITATE ACCESS.
I PERSONALLY FOCUS ON BREAST
CANCER BUT I'M SURE THIS IS THE
CASE FOR OTHER PHENOTYPES.
AND I THINK AT THE END, THERE
NEEDS TO BE A CHANGE IN THE WAY
WE PROVIDE ACCESS TO CARE IN THE
U.S. AND IN LATIN AMERICA TOO.
>>THANK YOU.
THERE IS A QUESTION FOR DR.
DUCONGE, WHAT WAS THE PROCESS
FOR DEVELOPING THE CLINICAL
DECISION SUPPORT TOOL?
CAN YOU COMMENT ON THAT?
>>YEAH, IT'S ESSENTIALLY
SIMILAR TO WHAT WAS SHOWN DR.
FEJERMAN SHOWED IN HER
PRESENTATION, SOME DIFFERENT
COEFFICIENTS THAT ARE MODIFIED
IN THE GENE OR GENETIC MARKER
THAT IS FOUND TO BE ASSOCIATED
WITH THE RESISTANCE TO THE DRUG.
SO IT'S A POLYNOMIAL EQUATION
THAT INCLUDES ALL THE GENETIC
MARKERS THAT ARE RELEVANT,
PREDICTIVE VALUE TO THE RISK FOR
ADVERSE EVENTS, POOR RESPONSE TO
THE DRUG, YEAH, WE USED THIS
APPROACH TO DEVELOP THE
POLYGENIC RISK SCORE, WHICH IS
ESSENTIALLY SIMILAR TO WHAT IS
USED COMMONLY FOR THIS KIND OF
MODEL, IN THIS CASE THE ONLY
THING THAT WAS DIFFERENT WAS
THAT WE ADJUSTED THE MARKERS BY
ANCESTRY.
SO WE USED THE LOCAL ANCESTRY TO
ADJUST THE MARKERS, I WOULD SAY
TO WAIT, TO PROVIDE WEIGHT
FACTORS FOR GENETIC MARKERS
INCLUDED IN THE MODEL.
>>THANK YOU.
THANK YOU FOR THAT COMMENT.
I DO A QUESTION FOR DR.
LOPERA.
YOU MENTIONED HOW TO IMITATE
NATURE, YOU SUGGESTED, IS ONE
SOLUTION.
SO I WANTED TO HEAR A LITTLE BIT
MORE, DO YOU HAVE IDEAS HOW WE
CAN PREVENT THIS DISEASE AND HOW
DO WE IMITATE NATURE?
>>YES.
ED DISCOVERY OF PROTECTIVE GENE
SHOWS US THAT WE CAN IMITATE
NATURE, THEN WE -- THIS IS THE
CASE THAT GIVE US A LESSON, VERY
IMPORTANT.
THE PREVENTION, THE CURE OF
ALZHEIMER'S, IS NOW IN THE
NATURAL BECAUSE ALIRIA WAS AN
EXCEPTIONAL CASE, IN THE
FAMILIES WITH AUTOSOMAL DOMINANT
DISEASE THAT CARRIED GENE OF
CAUSALITY THAT IS VERY SIMILAR
IN MANIFESTATION AND SHE DIDN'T
DEVELOP ALZHEIMER'S DISEASE AT
THE AGE EXPECTED, 44 YEARS.
SHE DEVELOPED IMPAIRMENT AT 72
YEARS OLD.
THAT SHE WAS PROTECTED FOR 29
YEARS, THEN IT MEANS THAT NATURE
HAVE THE OPTION TO RETARD THE
ONSET OF SYMPTOMS OF ALZHEIMER'S
DISEASE CAUSED BY GENE OF
CAUSALITY FOR 29 YEARS, THEN IF
YOU THINK THAT YOU CAN IMITATE
NATURE, THEN IT'S POSSIBLE TO
RETARD ONSET FOR 29 YEARS.
AND IF MORE SO PEOPLE HAVE
DISEASE STARTS AT 65 YEARS OLD,
THEN RETARDING FOR ALMOST THREE
DECADES, THEY ARE GOING TO
DEVELOP SYMPTOMS AT 95, THAT
DISEASE, I THINK THIS IS A CURE,
THIS IS A METHOD OF PREVENTION,
AND THE CONCLUSION IS THAT WE
NEED TO LEARN TO READ THE
NATURE, TO UNDERSTAND THE NATURE
AND IMITATE NATURE.
WE DON'T NEED TO DISCOVER.
>>WE NEED TO HAVE THOSE CORRECT
ENVIRONMENTAL CONDITIONS,
EXTERNAL CONDITIONS, THAT WILL
ALLOW THE DISEASE ONSET TO BE
DELAYED.
>>AND WE CAN IMITATE NATURE,
USING TWO WAYS.
ONE WAY, ONE WAY IS TO DOOR
GENETIC THERAPY, BECAUSE IF I AM
ABLE TO INTRODUCE GENETIC
INFORMATION, PROTECTOR GENETIC
INFORMATION, IN A PERSON WHO HAS
A HIGH RISK TO THE DISEASE, WE
CAN IMITATE NATURE DOING THAT.
ANOTHER WAY IS TO DEVELOP DRUGS
THAT HAVE ACTION MECHANISM AS
PROTECTOR GENE DO IN THE BRAIN
OF THE PERSON WHO IS PROTECTED.
WE CAN DO GENETIC THERAPY OR
DRUG THERAPY.
>>THANK YOU FOR YOUR INSIGHTFUL
COMMENTS.
I WANT TO GO BACK TO ANOTHER
QUESTION THAT YOU ALL TOUCHED
UPON IN TERMS OF DEVELOPING
COLLABORATIONS BETWEEN THE U.S.
AND LATIN AMERICA BUT I WANTED
TO HEAR A LITTLE BIT MORE IN
TERMS OF WHAT ARE SOME OF THE
LESSONS LEARNED, CHALLENGES, HOW
DO YOU OVERCOME THOSE AND IS
THERE ANY INSIGHTS YOU WANT TO
SHARE ABOUT CREATING BIOBANKS,
CREATING THESE CROSS-NATIONAL
CONSORTIA THAT WILL HELP US ALL
ENRICH THE RESEARCH DATA?
WHO WANTS TO GO FIRST?
>>I WOULD LIKE TO SAY THAT I AM
VERY -- I WANT TO SAY THANKS
VERY MUCH TO NATIONAL INSTITUTE
OF HEALTH, UNITED STATES,
BECAUSE IN MY CASE IN COLOMBIA,
ALL THE JOBS WE HAVE DONE IN
AUTOSOMAL DOMINANT ALZHEIMER'S
ANDS OTHER TOPICS WE HAD SUPPORT
FROM NATIONAL INSTITUTES OF
HEALTH.
WE HAVE SEVERAL GRANTS
SUPPORTING THAT, AND THAT WAS
WONDERFUL, WAS VERY INTERESTING.
AND IT WAS POSSIBLE BECAUSE WE
HAD GOOD COLLABORATION WITH
OTHER RESEARCHERS IN THE UNITED
STATES.
MASSACHUSETTS GENERAL HOSPITAL,
CALIFORNIA HOSPITAL, SOME ARE
MEMBERS OF MY TEAM THAT NOW ARE
RESEARCHERS, WORKING IN THE
UNITED STATES.
BUT BECAUSE THEY ARE FROM HERE,
THEN WE NEED A NETWORK, COLOMBIA
RESEARCHERS IN THE UNITED
STATES, WE LIVING HERE AND WE
NEED EFFORT IN ORDER TO LOOK FOR
RESEARCH IN NATIONAL INSTITUTES
OF HEALTH.
I THINK THIS IS VERY IMPORTANT
TO DO BIG NETWORKS IN THE
COUNTRIES, LATIN AMERICA, ALSO
WITH OTHER RESEARCHERS IN THE
UNITED STATES.
>>PRESENTED EARLIER TODAY, THE
PERUVIAN STUDIES, STRONG
COLLABORATION WITH DR. TATIANA,
AND I THINK, YOU KNOW,
FACILITATING COLLABORATIONS
BETWEEN NETWORKS OF SPECIALLY,
YOU KNOW, AS U.S. LATINAS WITH
LATINA AMERICAN INVESTIGATORS
WHERE WE CAN REALLY -- WE GET
EACH OTHER REALLY WELL AND WE
HAVE THAT FLEXIBILITY FROM -- I
LIVED THERE FOR MANY YEARS, I
KIND OF UNDERSTAND HOW THINGS
ARE.
I CAN HAVE A LOT OF DIALOGUE,
NOT A LOT OF EXPLANATION TO
NEEDS TO HAPPEN, COLLABORATIONS
BETWEEN U.S. AND LATINA
INVESTIGATORS AND LATINA
AMERICAN P.I.s ARE VERY
FRUITFUL IN MY OPINION.
>>THANK YOU.
DR. DUCONGE?
YOU'RE MUTED.
>>YES, I WAS SAYING I FULLY
AGREE WITH MY COLLEAGUES.
I JUST WANT TO ADD THAT IN MY
OPINION THERE'S A GREAT
POTENTIAL FOR THESE KIND OF
COLLABORATIONS.
IT'S BECOMING INCREASINGLY CLEAR
THE FIELD IS LOOKING FOR
MULTI-CENTER COLLABORATIVE
EFFORTS WORLDWIDE SCALE, IN
ORDER TO ENHANCE DIVERSITY AND
ACCOUNT FOR POTENTIAL
CONFOUNDERS, SUCH AS POPULATION
STRATIFICATION, TO DERIVE ROBUST
PREDICTIVE ALGORITHMS, INCLUDING
ACCESS TO DATABASES AND
REPOSITORIES WITH INFORMATION
FROM UNDERREPRESENTED GROUPS,
GIVEN DIFFICULTIES IN
RECRUITING, LANGUAGE BARRIERS,
SOME OTHER REASONS, I THINK THAT
WOULD BE GREAT.
OTHER AREAS OF POTENTIAL
COLLABORATIONS ARE TO PERFORM
META-ANALYSES AND TO CONDUCT
REPLICATION STUDIES TO CONFIRM
FINDINGS IN POPULATIONS LIKE
PUERTO RICO IS A RELATIVELY
SMALL POPULATION, SO FOR THE
SAKE OF GENERALIZABILITY AND
TRANSFERABILITY ACROSS DIFFERENT
LATINA POPULATIONS I THINK THAT
WOULD BE A WAY MOVING FORWARD IN
THIS DIRECTION.
>>THANK YOU.
WE'RE OVER TIME.
DR. SALINAS, A QUICK COMMENT?
>>YES, TWO QUICK COMMENTS.
FIRST TO TRY TO STANDARDIZE OUR
CENTERS IN LATIN AMERICA AND NIH
CAN HELP PROVIDE EDUCATION AND
MINIMAL REQUIREMENTS, THAT YOU
WISH THAT LATIN AMERICAN CENTER
CAN HAVE TO BE PART OF A
NETWORK.
AND THE SECOND ONE IS TO PLAY
THE ROLE TO CONNECT PEOPLE, ALL
OF US HAVE COLLABORATION WITH
THE U.S., BUT PERHAPS THE SAMPLE
SIZES ARE STILL NOT ENOUGH FOR
SOME OUTCOMES, JUST BECAUSE WE
MET ALL THE REQUIRED CENTERS
THAT CAN HELP US TO ACCOMPLISH
THE REQUIRED NUMBER.
SO NIH CAN HELP GIVE THE DIS
DISSEMINATION OF INFORMATION FOR
THE RESEARCHERS TO COLLABORATE
WITH EACH OTHER.
>>THANK YOU.
THANK YOU.
I WANT TO THANK THE PANELISTS
FOR REALLY VERY ENRICHING
DISCUSSION AND YOUR
PARTICIPATION.
SO WE'RE OVER TIME.
I'LL NOW TURN IT OVER TO LARISSA
FOR THE NEXT SESSION.
TAKE IT AWAY, LARISSA.
>>CAN YOU SEE MY SCREEN?
SORRY.
>>YES.
>>OKAY.
THANK YOU.
WELL, THANK YOU, RINA, AND THANK
YOU TO THE PANELISTS OF THE
GENOMICS SESSION FOR A VERY,
VERY ENRICHING AND INTERESTING
DISCUSSION.
LIKE WITH ALL THE PANELISTS AND
OTHER SESSIONS, WE REALLY
ENJOYED AND BELIEVE THAT THIS
WAS AN INCREDIBLY EDUCATIONAL
BRAINSTORMING TWO DAYS, THAT WE
HOPE ARE GOING TO BE INSPIRING,
NOT ONLY TO THOSE WHO ARE HERE
IN THE WORKSHOP, BUT ALSO OTHERS
WHO ARE WATCHING AFTER IT IS
POSTED ON VIDEOCAST.
WE WANT TO TAKE A FEW MINUTES
FOR CLOSING REMARKS.
BEFORE WE DO THAT, BEFORE WE
COME TO THE END I WOULD LIKE TO
SAY THANK YOU TO CONSTANZA, ONE
OF THE CO-CHAIRS WHO COULD NOT
BE HERE.
SHE WAS EXTREMELY CONTRIBUTORY
AND WE ENJOYED WORKING WITH HER
AND SHE ENJOYED CHAIRING TWO OF
THE -- MODERATING TWO SESSIONS
YESTERDAY.
MICHELE DOOSE AND I ARE SHARING
OUR THOUGHTS FOR THE LAST FEW
MINUTES.
FIRST, I WOULD LIKE TO -- SORRY.
I WOULD LIKE TO SHOW AGAIN THIS
MAP THAT I SHOWED AT THE VERY
BEGINNING OF THE WORKSHOP, AND
IT'S TO HIGHLIGHT AND SAY THANK
YOU TO ALL THE SPEAKERS THAT
PARTICIPATED, THAT SHARED TIME,
KNOWLEDGE, ENTHUSIASM OVER THE
LAST TWO DAYS.
WE HAVE 36 SPEAKERS FROM LATIN
AMERICA, UNITED STATES, EUROPE.
AND WE HAD AMPLE DISCUSSIONS ON
WAYS TO COLLABORATE ON ISSUES
EMERGING RESEARCH TOPICS,
BRAINSTORMING, FINDING
SOLUTIONS, FOR COMMON GROUND FOR
COMMON BENEFIT TO BOTH LATIN
AMERICA AND U.S. HISPANIC LATINA
POPULATIONS.
IN ESSENCE, MULTIPLE CHALLENGES
AND DISPARITIES EXIST AND
PERSEVERE RELATED TO NON-COMMUNE
C OMMUNICABLE DISEASES IN LATIN
AMERICA, OPPORTUNITIES TO DO
RESEARCH AND CHANGE FOR GOOD.
WE LEARNED THAT THERE ARE MANY
STUDIES AND INTERVENTIONS THAT
ARE SHEDDING LIGHT ON FINDINGS
ABOUT HEALTH, ON INTERVENTIONS
OR APPLICATIONS OF KNOWLEDGE ON
METHODOLOGY, AND ALSO HOW TO
COLLABORATE AND HOW TO CONTACT
THE POPULATION, FOR INSTANCE IT
WAS A COMMON THEME ACROSS SOME
OF THE PRESENTATIONS THAT
THERE'S HUMAN CAPITAL,
INVESTIGATORS, KNOWLEDGE,
TRAINING, MORE TRAINING IS
NEEDED STILL, THERE'S
INFRASTRUCTURE AND
INFRASTRUCTURE THAT IS STRONG IN
SOME PLACES, IN OTHER PLACES
NEEDS IMPROVEMENT, IT IS THERE.
IT'S IMPORTANT WHEN WE PERFORMED
STUDIES THAT THEY ARE RELEVANT
TO THE POPULATION OF INTEREST,
AND THAT WE MEET THEIR NEEDS AS
WELL, THAT WE HAVE THAT
CONVERSATION WITH THEM, AND BY
POPULATION WE MEAN BOTH
PARTICIPANTS IN THE STUDIES AND
ALSO INVESTIGATORS.
THAT MANY ADOPTING CREATIVE
RECRUITMENT APPROACHES GOING
WHERE THE PATIENTS ARE, WHERE
THE INDIVIDUALS ARE, WHERE THE
POPULATION IS, AND THIS MAKES
ALL SENSE.
AND IDENTIFYING SOCIAL AND
ENVIRONMENTAL FACTORS.
MICHELE?
>>YEAH, I THINK WE'RE STARTING
TO IDENTIFY IMPORTANT CITY AND
NEIGHBORHOOD DRIVERS OF HEALTH
AND HEALTH INEQUITIES.
YET THERE'S STILL A LOT OF
SOCIAL AND ENVIRONMENTAL FACTORS
THAT REMAIN UNDEREXPLORED.
>>WE ALSO LEARNED THAT THERE IS
STILL A HUGE NEED FOR BOTH
PREVENTION AND MANAGEMENT OF
CHRONIC DISEASES IN LATIN
AMERICA, ALSO AMONG U.S.
HISPANIC LATINAS.
NOW, COMMENTS WERE MADE TO
PROTECT RESOURCES FOR BOTH, NOT
SACRIFICING TREATMENT OR
MANAGEMENT TO DO PREVENTION OR
VICE VERSA, THAT BOTH NEED TO BE
DONE.
THAT DATA COLLECTION AND QUALITY
MEASURES ARE EXTREMELY IMPORTANT
AND THESE WERE HIGHLIGHTED AND
UNDERLINED IN SEVERAL
PRESENTATIONS, AND IN FACT SOME
STUDIES HAVE BEEN DOING IT AND
HAVE DEMONSTRATED HOW TO DO IT
EFFICIENTLY.
THE ROLE OF DIGITAL TECHNOLOGY
IN ENGAGING PATIENTS OR ENGAGING
PARTICIPANTS IN REPORTING THEIR
OWN OUTCOMES BUT ALSO IN
INTERVENTIONS.
ARTIFICIAL INTELLIGENCE WAS ALSO
A THEME THAT ESPECIALLY WAS
ADDRESSED TODAY.
ARTIFICIAL INTELLIGENCE IS
GROWING, IT'S A FIELD THAT IS
BECOMING MORE AND MORE
IMPORTANT.
AND IN A WAY HELPS TO CREATE
ALGORITHMS TO MAKE DECISIONS.
NOW, IT IS NOT THE ALGORITHM
THAT IS GOING TO RESOLVE ALL THE
PROBLEMS, OR THAT WE SHOULD
DEPEND ON IT ONLY.
THE HUMAN COMPONENT,
RELATIONSHIP BETWEEN CLINICIAN
AND PATIENT IS ESSENTIAL.
THROUGH THAT RELATIONSHIP THE
INTERPRETATIONS OF THE RESULT IS
GOING TO HAPPEN.
MICHELE?
>>YES, I WANT TO ADD UNMET
HEALTH CARE NEEDS DUE TO
BARRIERS CONTINUES TO BE A
PROBLEM, IN LATIN AMERICA AND IN
THE U.S.
THERE ARE NEW EFFORTS TO
INTEGRATE SYSTEMS, PUBLIC
HEALTH, HEALTH CARE, SOCIAL
SERVICES, AND LESSONS LEARNED
HOW TO STRENGTHEN PRIMARY CARE,
WHAT TEAM-BASED CARE, AND ALSO
LESSONS TO BE LEARNED FROM
RESILIENT HEALTH SYSTEMS,
ESPECIALLY LEARNING FROM PUERTO
RICO.
>>WE HEARD ABOUT EFFECTIVE
COMMUNITY ENGAGED RESEARCH, AND
WE LEARNED IT WAS SUPER
EMPHASIZED THAT ENHANCES,
GUARANTEES, STRENGTHENS
PARTICIPATION AND MEMBERS OF THE
COMMUNITY THAT GET THE
EDUCATION, GET THE LEARNING, THE
ESSENCE OF WHAT RESEARCH IS AND
THAT BUILDING TRUST IN SCIENCE.
ALSO, WE HEARD ABOUT HEALTH AND
PUBLIC POLICIES.
AND HOW THEY IMPACT OR INFLUENCE
HEALTH, HEALTH OUTCOMES, AND
RESEARCH.
FOR INSTANCE, WE HEARD ABOUT
SOME PUBLIC POLICIES THAT HAVE
DEMONSTRATED POSITIVE IMPACT ON
HEALTH OUTCOMES LIKE MORTALITY,
OR SOME INTERMEDIATE OUTCOMES
LIKE CHANGES IN LIFESTYLE OR
HABITS OR SOME CLINICAL
OUTCOMES.
AT THE SAME TIME, WE HEARD ABOUT
POLICIES THAT COULD ACTUALLY BE
HARMING AND HINDERING THE HEALTH
AND ACCESS TO HEALTH CARE FOR
SOME POPULATIONS, ALSO HAVING AN
IMPACT ON THE HEALTH WORKFORCE
AND FUNDING FOR RESEARCH.
IN ORDER TO BE EFFECTIVE, IN
ORDER FOR IMPLEMENTATION OF
RESEARCH FINDINGS TO BE
EFFECTIVE AND LONG TERM,
GOVERNANCE IS NEEDED.
GOVERNANCE FROM MINISTRIES OF
HEALTH, FROM ALL THOSE LOCAL
GOVERNMENTS, AGENCIES OR
ENTITIES, THAT ARE GOING TO
FOSTER AND STRENGTHEN AND MAKE
SURE RESULTS ARE GOING TO BE
IMPLEMENTED AND GOING TO BE
LASTING.
AND THERE'S ALSO -- IT WAS ALSO
NOTED FOR MANY POLICIES,
EVALUATION IS NEEDED.
IN TERMS OF THE HISTORY OF THE
DISPARITIES, DISCRIMINATION AND
OPPRESSION, THAT'S EXPERIENCED
BY INDIGENOUS POPULATIONS, IT
WAS MENTIONED THAT HEALTH
EDUCATION IS A GREAT APPROACH TO
INCREASE EQUITY, AT THE SAME
TIME RESEARCHERS NEED TO BE
VERY, VERY EXTREMELY COGNIZANT
OF THAT HISTORY, OF THAT
BACKGROUND, AND DEMONSTRATE AND
APPROACH THIS POPULATION WITH
EMPATHY, BUT ALSO VERY, VERY
IMPORTANTLY ADDRESS RESEARCH AND
CONSIDER RESEARCH DESIGNED AND
IMPLICATIONS, CONSEQUENCE OF
THAT RESEARCH FROM ETHICAL
PERSPECTIVE.
MICHELE, DO YOU WANT TO SAY
SOMETHING?
SORRY.
>>NO, I WAS AT THE -- I'LL WAIT
TILL THE NEXT SLIDE.
>>WE HEARD THAT IT'S DIFFERENT
FROM THE U.S., STILL
DISCRIMINATION, RACISM AND
MISTREATMENT EXISTS ACROSS THE
REGION.
LOW REPRESENTATION?
STUDIES YET THIS IS AN
OPPORTUNITY.
THERE IS A STUDY THAT HAS
DEMONSTRATED UNIQUE VARIANTS
ASSOCIATED WITH PROTECTION, DUE
TO INCREASE IN MEN'S DIVERSITY
OF GENETIC POOL, MIXTURE OF
LATIN AMERICAN, HISPANIC
LATINOS.
AND THESE DISCOVERIES ARE
SETTING THE PATH, PLANTING THE
SEEDS, FOR PRECISION MEDICINE.
DISCOVERIES, DESCRIPTION OF
CLINICAL PHENOTYPES,
PHARMACOGENOMICS, FOR EXAMPLE.
AND THIS REPRESENTS
OPPORTUNITIES FOR FUTURE
TRANSLATION INTO CLINICAL CARE.
>>I WANT TO ADD THAT I
APPRECIATE HISTORICAL CONTEXT IN
LATIN AMERICA AND ALSO
HIGHLIGHTING THAT LATINOS IS NOT
A MONOLITHTIC GROUP AND WE NEED
BETTER DATA TO STOP
DISCRIMINATION IN OUR
COMMUNITIES.
I HEARD NEED FOR COORDINATED
COLLABORATIVE EFFORTS WITH
REGIONAL CAPACITY STRENGTHENING
BEING KEY FOR ADVANCING RESEARCH
AND APPRECIATED SPEAKERS
HIGHLIGHTING THEIR WORK DOING
TRANSNATIONAL RESEARCH AND
LEARNING ABOUT OPPORTUNITIES AND
CHALLENGES THEY HAVE OVERCOME.
>>AND WE HEARD ABOUT EFFECTIVE
COLLABORATIONS WITH U.S.
INVESTIGATORS.
RECOMMENDATIONS, JUST MAKING
SURE, HORIZONTAL ENGAGEMENT OF
LATIN AMERICAN INVESTIGATORS ALL
AT THE SAME LEVEL, PARTNERSHIPS,
RESPECTFUL CONSULTATION AND
PARTICIPATION, FROM THE OUTSET
AT THE TIME THE IDEA IS
CONCEIVED, AND THAT STUDY DESIGN
AND ALL METHODOLOGY AND ALL THE
HOW, WHY'S, WHATS, TO INCLUDE
THEM.
AND TO CREATE FORUM OR MORE THAN
ONE FORUM TO FOSTER EXCHANGE OF
BEST PRACTICES.
MICHELE?
>>YOU'VE COVERED ALL THE
IMPORTANT POINTS.
>>NOW WE WOULD LIKE TO THANK
MANY PEOPLE.
FIRST, DR. ELISEO STABLE-PEREZ
FOR SUPPORTING THIS WORKSHOP.
I WOULD LIKE TO THANK OUR
COLLEAGUES AND FRIENDS FROM
NIMHD AND OTHERS FOR SUPPORTING
US, COLLABORATING, PARTICIPATING
IN THIS WORKSHOP.
RINA DAS, JARRETT JOHN TOES,
SIMULATIONRANN AND CAROLINA WITH
MODERATORS, AND I WANT TO
MENTION THE OTHERS AND
ADMINISTRATIVE OFFICIALS.
MICHELE?
>>I WANT TO THANK OUR SPEAKERS
TODAY.
I HEARD OPTIMISM, OPPORTUNITY,
SOLUTIONS TO ADDRESS THE BURDENS
OF NON-COMMUNICABLE DISEASES
THAT IMPACT OUR COMMUNITY ACROSS
THE HEMISPHERE.
I WANT TO THANK OUR TEAM FOR
MAKING THIS WORKSHOP A SUCCESS
AND THERE WERE A LOT OF PEOPLE
BEHIND THE SCENES THAT MADE SURE
EVERYTHING FLOWED NICELY.
THANK YOU TO SIDEM, MARK GIFFORD
FOR THE E-MAILS, MEETINGS,
EDITS, MAKING SURE THE WORKSHOP
RAN SMOOTHLY, GREATLY APPRECIATE
IT.
I WANT TO THANK MY CO-CHAIR AND
TAKE A MOMENT TO THANK AND
RECOGNIZE DR. LARISSA
AVILES-SANTA.
HER VISION IS A PARADIGM SHIFT,
WE AS RESEARCHERS MUST IMPOSE
OUR KNOWLEDGE ONTO OTHER
COUNTRIES, TO REALLY REFRAMING
THIS PERSPECTIVE THERE'S SO MUCH
WE CAN LEARN FROM RESEARCHERS IN
LATIN AMERICA AND IDENTIFYING
OPPORTUNITIES TO COLLABORATE, TO
ANSWER UNANSWERED QUESTIONS THAT
REMAIN REGARDING HEALTH AND LIFE
CARE ACROSS THE LIFE COURSE,
GENERATIONS, COUNTRIES,
BOUNDARIES, WITHIN THE DIVERSE
OF LATINOS AND HISPANICS
INCLUDING INDIGENOUS
POPULATIONS.
[SPEAKING SPANISH]
>>THANK YOU.
YOU'RE AN INSPIRATION.
THANK YOU FOR YOUR HARD WORK TO
MAKE THIS VISION COME TRUE.
>>THANK YOU, MICHELE!
THANK YOU.
WE WOULD LIKE TO CLOSE WITH A
NOTE THAT WE ARE VERY, VERY
COGNIZANT THAT NOVEMBER 1 AND
NOVEMBER 2 ARE DAYS OF
CELEBRATION IN LATIN AMERICA,
DIA DE LOS MUERTOS.
WE'RE GRATEFUL FOR THAT.
AND WITH THIS, THANK YOU AGAIN,
MUCHAS GRACIAS PORE TODO, WE
HOPE THIS IS THE BEGINNING OF A
LONG TERM RELATIONSHIP, SO THANK
YOU AGAIN, GOOD EVENING, GOOD
NIGHT.