HELLO AND GOOD MORNING,
EVERYBODY. HONOR TO BE HERE.
LET'S GET STARTED. I'M FROM THE
UNIVERSITY OF ARIZONA WHICH IS
ON LAPPED AND TERRITORIES OF
INDIGENOUS PEOPLE. TODAY
ARIZONA IS HOME TO TWO FEDERALLY
RECOGNIZED TRIBES AND HOME TO
ODUM AND YAKI AND HISPANIC
SERBIAN INSTITUTION THAT I'M
PROUD OF SHOWING A PICTURE WITH
SISTERS AND STORY OF HOLDING MY
[INDISCERNIBLE] SO THAT FUTURE
GENERATIONS HAVE OPPORTUNITY AND
SHOWING A PICTURE OF US BORDER
-- TO IMPROVE AND PROTECT
ENVIRONMENT IN THE BORDER AND
SHOWING A PICTURE OF MY PARENTS.
DOING THIS IT IS IMPORTANT AS
RESEARCHERS AND SCIENTISTS WE
UNDERSTAND POSITIONALITY AND
WHERE WE COME FROM AND HOW WE
APPROACH OUR WORK AND I CAN'T GO
THROUGH MY WHOLE HISTORY HERE
BUT I'M ALSO A TRANS
DISCIPLINARY RESEARCHER AND WHAT
DOES IT MEAN? ROOTS ARE IN
SCIENCE OF ECOLAND EVOLUTION AND
BIOLOGY AND PHD IN SOIL WATER
AND ENVIRONMENTAL SCIENCE WITH
MINOR IN POST ART AND STARTED
ACADEMIC CAREER IN HEALTH
SCIENCES AND WOULD LOVE TO BE
FORTUNATE TO RETURN TO HOMETOWN
OF ARIZONA TO BE IN DEPARTMENT
OF ENVIRONMENTAL SCIENCE.
POLLUTION IS CAUSE OF PREMATURE
DAENL AND DISEASE -- 1 IN 4
AMERICANS ARE LIVING WITHIN 3
MILES OF A HABITED WAYSIDE.
THIS IS UNJUST AND MOTIVATION OF
WORK I DO TODAY WE RECOGNIZE IN
ENVIRONMENTAL CONTEXT THERE ARE
FUNDAMENTAL CHALLENGES NEEDING
TO BE IDENTIFIED IN WORK AND
SECOND ONE IS TECHNICAL ELITISM.
DOES IT MEAN? VOICES OF THOSE
AFFECTED ARE SOMETIMES NOT
LISTENED TO OR LOCAL NORTH
EXPERTISE IS NOT INCORPORATED
INTO RESEARCH AND DESIGN PROCESS
THAT IS PROBLEMATIC.
CONVENTIONAL HEALTH INTERVENTION
AND PROMOTION HEALTH STRATEGIES
ARE FAILING AND REASON METHODS
ARE FAILING IS THEY ARE TRYING
TO MITIGATE SOURCES OF
ENVIRONMENTAL HEALTH RISK AT
INDIVIDUAL BEHAVIORAL LEVEL
RATHER THAN LOOKING AT SOCIAL
POLITICAL AND CULTURAL CONTEXT
AND ASK THE GROUP TODAY THINKING
ABOUT WORK WITHIN SOCIAL AND
POLITICAL CONTEXT PERPETUATING
INJUSTICE WHERE SOME EXPERIENCE
EXPOSURE AND OTHERS DON'T. A
LOT HAVE BEEN THINKING ABOUT
SOLUTIONS TO THIS ISSUE. ONE
THING THAT WE COME ACROSS IS
PARTICIPATORY RESEARCH METHODS.
WE KNOW THAT WHEN YOU ENGAGE THE
COMMUNITY AND PEOPLE CLOSEST TO
CHALLENGE IF IN SOLUTION
GENERATING DIALOGUE THAT YOU
HAVE INNOVATION AND
TRANSFORMATION. WE KNOW THIS
WORKS. INTERESTINGLY WITH
SEEKING DIFFERENT TERMS COMING
FROM DISCIPLINES ACROSS
DIFFERENT DISCIPLINES FOLLOWED
THROUGH DIFFERENT DISCIPLINES
ACKNOWLEDGING PARTICIPATORY
RESEARCH METHOD IS SOLUTIONS TO
IGNORE CHANGE AND WANT TO SEE
MESOAND MACROLEVEL CHANGESES
RELATING TO POLICY LEGISLATION
AND ENFORCEMENT AND WAYS TO DO
IT AND HIGHLIGHTING TERMS HERE.
IN WORK I DO COCREATED COMMUNITY
SCIENCE AND COMMUNITY MEMBERS
ARE PARTICIPATING IN MOST OF THE
SCIENTIFIC PROCESS AND TODAY I
WILL HIGHLIGHT NO. 1 AND 8
THROUGH 10 AND NO. 1 STARTING
OUT IN PARTNERSHIP BUILDING AND
HAVING [INDISCERNIBLE] FROM
COMMUNITY MEMBERS AND 8 THROUGH
10 ABOUT THE DATA SHARING
EXPERIENCE OR REPORT BACK OR
DATA REPORT BACK OR DATA SHARING
AND WHAT WE WILL USED TO AND
TRYING TO GET PEOPLE IN THE ROOM
TO LAUGH, EVERYONE ON THE LINE.
WE KNOW. COME ON. WE HAVE A
RIGHT TO KNOW. COME ON. RIGHT?
REALLY? CAN WE TALK ABOUT THIS?
WE HAVE A RIGHT TO DESIGN
CO-DESIGNING RESEARCH PROJECTS
CO-DESIGNING SHARING BACK
MATERIALS AND I WILL PULL FROM
EQUITY CENTER COMMUNITY DESIGN
COMING OUT OF REACTION LAB AND
SIMILARITIES WITH PARTICIPATORY
RESEARCH MECHANISMS LIKE CTR AND
COMMUNITY BASED PARTICIPATORY
RESEARCH AND I'M SHOWING THIS
BECAUSE IT IS THE CENTER OF
HISTORY AND FEELING AND
ACKNOWLEDGING AND DISMANTLING
POWER CONSTRUCTS THAT IS
CRITICAL WHEN ENGAGING AND
WORKING WITH PEOPLE AND I WILL
GO THROUGH DIFFERENT SELECT
ASPECTS AROUND FOR THAT CENTER
FOR AND HIGHLIGHTING WE NEED TO
UNDERSTAND THE HISTORY AND
WORKING TOWARDS HEALING AND SDPS
MANTLING POWER CONSTRUCTS THAT
ARE PERPETUATING JUSTICE AND
FIRST IS DEFINING AND ASSESSING
TOPICS AND COMMUNITY NEEDS.
COMMUNITY MEMBERS ARE ASKING
QUESTIONS AND GOOD QUESTIONS.
SOIL STATE AND GROWING FOODS AND
[INDISCERNIBLE] IN HARVESTED
RAIN WATER YOU SEE PEOPLE DOING
THE RIGHT THING PUBLIC HEALTH
HARVESTING FOODS AND POLLUTION
AND RAINWATER AND THIS IS
GETTING IN EFFORTS AND WE NEED
TO UNDERSTAND AND DIVERSE
CREATORS THROUGH OUT THE
RESEARCH PROCESS BUT IN THIS
CASEIN VIET CO-CREATORS IN THE
DESIGN PROCESS YOU ARE HIRING
COMMUNITY HEALTH EDUCATORS OR
[INDISCERNIBLE].
SO, IN COMMUNITIES I ENGAGE, 50%
ARE LIMITED INCOME AND PEOPLE OF
COLOR AND SAYING THAT THEY
DIDN'T HAVE A COLLEGE DEGREE AND
THEY LIVE IN RURAL SPACES AND
25% DOMINANT LANGUAGE IS SPANISH
THAT REQUIRES US TO WORK
TOGETHER CREATIVELY IN THE DATA
REPORT BACK PROCESS AND NEED TO
BE RAPID PROTO TYPING AND
TEXTING AND LEARNING AND IT
LOOKS LIKE IT IS COMING FROM
SCHOLARS AND COMMUNICATION AND
FORMATIVE VALUATION TO INFORM
EFFORTS AND WHAT DOES THIS LOOK
LIKE? CREATE A DRAFT AND SHARE
CODESIGN AND EVALUATE AND
ANALYZE AND GO OVER IT OVER AND
OVER AGAIN AND YOU SEE
HIGHLIGHTING EFFORTS YOU USE
MIXED METHODS OF APPROACH AND
YOU SEE INTERVIEWS RIGHT AFTER
DATA SHARING EVENTS AS WELL AS
LOOKING AT PARTICIPANT JOURNAL
ENTRIES AND HIGHLIGHTING IN THIS
CASE PROJECTS AND COMMUNITY
MEMBERS COMING TOGETHER DEFINING
RESEARCH QUESTION AND COLLECTING
SAMPLES TOGETHER DOING ANALYSIS
AND DATA SHARING THAT IS
FACE-TO-FACE WITH
[INDISCERNIBLE] AND THIS IS A
HARDCOPY OF THE BOOKLET AND
INTERACTIVE WEBSITE AND INCLUDES
OUR EXPERIENCES THAT I WON'T BE
ABLE TO SHARE TODAY AND WITH
GARDEN ROOTS ONE OF THE FIRST
COMMUNITY SCIENCE PROJECTS I
STARTED COMMUNITY MEMBERS WANTED
TO KNOW HOW MUCH COULD I EAT
FROM MY GARDEN? THIS WAS
NEIGHBORING TWO SOURCES OF
[INDISCERNIBLE] AND WITH
SUPERFUND SITE.
IT WAS CRITICAL TO NOT ONLY
UNDERSTAND THE RESEARCH PROCESS
BUT UNVALE THE PROCESS AND WE
WENT THROUGH ALL VARIABLES GOING
INTO CALCULATION TO CALCULATE
AVERAGE DAILY DOSE AND COMMUNITY
MEMBERS NEEDED TO BUILD CAPACITY
ENGAGE IN DECISION MAKING
PROCESS AROUND THE SUPERFUND
SITE AND ALSO IN THIS CASE
PEOPLE WANTED TO KNOW HOW MUCH
THEY COULD EAT. ALL RIGHT.
LET'S DO T CALCULATED AMOUNT YOU
COULD EAT FROM GARDEN BASED ON
CANCER TARGETED RISK AND
SPECIFIC DATA HERE I'M SHOWING
PEOPLE HOW MUCH THEY COULD EAT
FROM THEIR GARDEN IF WANTING TO
BE TARGET RISK 1 OUT OF A
MILLION CANCER CASES OR 1 OUT OF
10,000 AND US RECOMMENDED AMOUNT
OF CUPS PER WEEK.
[INDISCERNIBLE] 70 CUPS OF
ONIONS? I UNDERSTAND THAT.
LET'S REDO CALCULATION. THIS IS
WHAT YOU SEE HAPPEN.
LET'S KEEP GOING.
I CONTINUED WITH WORK HOW MUCH I
COULD EAT FROM MY GARDEN. YOU
SEE HERE THIS IS EXPANDING THE
EFFORTS AND DID A COMMUNITY EAT
ASSESSMENT AND ADDITIONAL
COMMUNITY MEMBERS AND COUNTIES
ASKING QUESTIONS ABOUT SOIL
QUALITY AND IF THEY COULD EAT
FOODS THEY ARE GROWING LOCALLY I
TOOK DATA AND SHOWED HOW MUCH
THEY COULD EAT USING WHAT
DIFFERENT CONCENTRATION OF
ARSENIC OBSERVED IN THEIR PLANTS
COMPARED TO US RECOMMENDED
VALUES. PROJECT HARVEST WE MADE
7 TAENDIFFERENT VISUALIZATIONS.
LET'S START LOOKING AT THIS AND
WHAT HAPPENS WHEN YOU START TO
USE SHAPES AND COLOR?
YOU HAVE SHAPE AND COLOR AND
LINES AND WHEN I'M SHOWING THIS
IT IS BECAUSE IN PROJECT THERE
IS A TOTAL OF [INDISCERNIBLE]
AND MEASURE RAIN WATER FOUR
TIMES A YEAR UP TO THREE YEARS
AND WE REPORTED IT BACK AT END
OF EVERY WATER YEAR AND
COMMUNITY MEMBERS WOULD GET
BOOKLETS AND HAVE THEM GATHERING
ASKING QUESTIONS AND RECEIVING
DATA AND INTERACTIVE WEBSITE IN
THE ANTED DATA WAS
CONTEXTUALIZED BY HOW THEY WERE
USING RAINWATER AND ASKED THEM
AND INCORPORATED RECOMMENDATION
FROM [INDISCERNIBLE] AND USE THE
STANDARDS THAT WERE AVAILABLE
AND DATA SHARING EXPERIENCE WAS
CONTEXTUALIZED BY HOW DO YOU USE
YOUR WATER? YOU SAY TO YOURSELF
I'M USING MY WATER TO BUILD
SWIMMING POOL FOR KIDS OR FOR
LIVESTOCK AND POLLTRY AND
COMPARE DATA TO THAT VALLEU AND
YOU SEE YOU ARE ABLE TO SHARE
YOUR DATA POINT HIGHLIGHTED
AMONG OTHERS IN YOUR COMMUNITY
AND STANDARDS ARE HORIZONTAL
LIN
LINES.
ONE THING THAT COMES UP, HOW DO
YOU KNOW YOU ARE SEEING CHANGES?
YOU THINK THEORETICAL FRAMEWORK
AND MEASURE OUTCOMES AND SAME
YOU ARE DOING IN LAB OR IN
[INDISCERNIBLE]. WHEN YOU THINK
ABOUT FOR OH, MY GOSH. SO, I
LET EVERYBODY KNOW I TAKE GREAT
PRIDE AND NOT HOW IT WAS
ORIGINALLY COMING OUT BUT
ACKNOWLEDGING HERE LOOKED AT
SELF-ADVOCACY AND PROJECT
HARVEST LOOKING AT ENVIRONMENTAL
LITERACY AND SENSE MAKING.
DON'T HAVE TIME TO GO INTO
DETAILS OF FRAMEWORKS ABOUT YOU
IMPORTANT TO PICK ONE WHEN
EVALUATING OUTCOMES AND WITH
GARDEN ROOTS VERSION 2.0 I WOULD
SAY WE HYPOTHESIZED
COLLABORATIVE SCIENCE PROJECT
COMBINED WITH COMMUNITY FIRST
REPORTING WOULD HAVE SELF-EF
ASSCY AND TRIGGERED INTERVENTION
STUDIES AND UNDERSTANDING A
DIFFERENCE BETWEEN THOSE WHO
CAME TO [INDISCERNIBLE] AND
THOSE WHO DID NOT. WHAT WE SEE
IS PUBLIC PARTICIPATION AND
INFORMATION DESIGN AND
FACE-TO-FACE COMMUNITY FOR
SUPPORTERS TRUSTED RESEARCHERS
AND COMMUNITIES THAT INCREASED
PARTICIPANT KNOWLEDGE AND
EFFICACY AND INCREASED OUR
UNDERSTANDING WHY THEY WERE
PARTICIPATING AND WHAT PROJECTS
THEY WANTED TO [INDISCERNIBLE].
MOVING ON TO USING HOW LITERACY
FRAMEWORK, YOU SEE THREE
CONCENTRIC CIRCLES AND BUILD TO
SELF-EFFICACY AND WORK TOWARDS
COMMUNITY CHANGE AND FOR THIS I
WILL SHARE WORDS FROM
PARTICIPANTS PARTING ON
SOMETHING AT MY HOME AND SEE
WHAT HAPPENS THERE AND GET
LEVERAGED RESULTS IT THAT SHOW
WHAT IS GOING ON IS REALLY
VALUABLE AND IF I HAD
PERCEPTIONS THAT ARE DIFFERENT
THAN WHAT IS IN THIS BOOKLET, I
HAVE TO ECONSIDER AND SAY THESE
ARE THE FACTS.
TO HAVE COMMUNITY MEMBERS AND
PARTICIPANTS TALKING ABOUT WAY
OF DATA IN TIME WHERE THERE IS
TRANSMITTED DATA AND DISTRUST IN
SCIENCE AND THIS IS AN AMAZING
ALTERATION. THE PARTICIPANT IS
KEYCONSTRUCTING MENTAL MODEL
AROUND ENVIRONMENTAL HEALTH AND
EXPOSURE AND HAD TO DUE TO THE
PANDEMIC, THERE IS RULES IN
PLACE WE HAD TO ADJUST AND
MODIFY PROJECT COLLECTION OF
HIGH LEVEL ENGAGEMENT. WE
ADMINISTERED THE SURVEY AND ONE
THING DURING THE SURVEY IS
CO-CREATING WITH PROMATORAS SAID
YOU HAVE BEEN GIVING BACK DATA
SETS AT END OF THE YEAR FOR
THREE YEARS AND WONDER IF DATA
VISUALIZATION WILL HELP THEM
INTERPRET PANDEMIC DATA. YES!
YOU SEE OVER 60% PARTICIPANTS
STATED THAT RECEIVING PROJECT
HARVEST AND THE BOOKLET THEY
FELT MORE COMFORTABLE
INTERPRETING COVID 19 DATE THAW
IS A WIN. MOVING TO ACTION AND
SELF-EFFICACY? HERE WE SEE
ACKNOWLEDGING COCREATED HIGH
LEVEL OF PARTICIPATION IN THE
PROCESS. PEOPLE ARE COLLECTING
SAMPLES AND ANALYZING DATA SETS
AND LOOKING THROUGH BOOKLETS
GOING THROUGH INTERACTIVE
WEBSITES.
THIS IS SHOWING FOCUS GROUP
DATA AFTER AN EVENT MEET UP AND
SHARE FOOD AND TALK ABOUT THE
DATA SET THIS IS A CIRCULAR TREE
NOW. HIGHLIGHTING YOU SEE LARGE
ORANGE CIRCLES HIGHLIGHT WHAT
PEOPLE TALKED ABOUT AND WITHIN
THOSE CIRCLES YOU SEE WHITE
CIRCLES AND INSIDE IS THE NUMBER
OF TIMES PEOPLE TALKED ABOUT
THAT TOPIC OF OUR CODE. YOU SEE
THERE WAS A POSITIVE REACTION TO
THE DATA SHARING EVENT AND
HIGH-LEVEL RESULT OF
INTERPRETATION OF UNDERSTANDING
RESULTS AND PERHAPS SOME HAD
QUESTIONS AND CONCERNS.
SO, NO NEED TO READ THROUGH THIS
SLIDE AND HIGHLIGHTING HERE
PEOPLE TOOK EVIDENCE-BASED
ACTION AND MODIFIED DATA SET AND
REDUCING FAMILY OR ANIMAL
EXPOSURE AND ANOTHER WAY TO
THINK ABOUT DATA IS THIS IS A
THANK YOU DIAGRAM AND WHERE YOU
CAN SAY, ALL RIGHT. WHAT WERE
THEY COMPARING OWN DATA TO?
YOU CAN SEE SOME PEOPLE LOOK AT
FIELD BLANKS AND OTHER COMPARE
TO STANDARDS AND IN HOUSEHOLD
AND CENTER AREA SHOWS HOW THEY
INTERPRETED DATA AND WHAT THEIR
REACTION WAS. IN THE END, YOU
SEE INTENT TO TAKE ACTION AND
YOU SEE WHAT PEOPLE DECIDED TO
DO AND YOU SEE BOOKLET ONLY
VERSUS RIPPLE EFFECT NOT TALKING
ABOUT ART EXPERIENCE BUT YOU CAN
START TO ATTRIBUTE WORDS OF
PARTICIPANTS AND COMMUNITY
SCIENTISTS VIEWING THIS
EXPERIENCE AND ONE THING YOU SEE
HERE IS PARTICIPANTS SAYING I
WANT TO NATURALLY GO TOWARDS
DRINKING STANDARD AND PERCEPTION
OF BIAS. I SHOULD ONLY LOOK AT
IRRIGATION AND NOT USING FOR
PRIMARY DRINKING SOURCE AND IN
MIND I ASK CAN WE DRINK IT?
GREAT TO SEE THIS DIALOGUE AND
IN ADDITION, OH, NO. I LOST
POWER.
NEXT SLIDE.
CANNOT START VIDEO. WE SEE A
PARTICIPANT SAYING IT IS AN EYE
OPENER AND YOU ARE AWARE THAT IT
IS POLLUTED AND WHEN YOU SEE IT
AND REGISTERED IT IS A REAL EYE
OPENER.
ALL RIGHT. KEEP GOING. NEXT
SLIDE LEADING INTO COMMUNITY
CHANGE AND I WILL THINK ABOUT
THE REPORT BACK AS BOUNDARY
OBJECTS THAT ARE COMING FROM
MUSEUM STUDIES WORLD AND IDEA
THAT OBJECT COULD MAINTAIN
INTEGRITY AND BE USED IN
DIFFERENT SOCIAL SPHERES. THIS
IDEA IS THAT -- THIS SLIDE, SO
SORRY ABOUT THIS. WOW.
ACTUALLY, NOT SURE WHY BUT THEY
LOOK GOOD ON MY END. RESEARCH
RESULTS NOT ONLY REPORT DATA
BACK BUT CAN BE USE THE TO
BRIDGE AND STIMULATE DIALOGUE
ACROSS STAKEHOLDERS LEADING TO
STRUCTURAL CHANGE IN WHAT WE
CALL LITTLE P OR [INDISCERNIBLE]
CALLED THE MIDDLE P AND
HIGHLIGHTING TWO EXAMPLES HERE
WHERE WE HAVE WHAT PEOPLE
COLLECTED AS WATER SAMPLES AND
DRINKING WATER IN ARSENIC AND
DATA SHARING EVENT FOR COMMUNITY
MEMBERS WHO IS ON PUBLIC AND
PRIVATE WATER AND CAME TOGETHER
AND NOTIFIED THE STATE AND WATER
UTILITY IS NOTICE OF VIOLATION
AND FINE FOR DRINKING WATER
STANDARD FOR ARSENIC AND ANOTHER
COMMUNITY I'M SHOWING TIMELINE
TO ACKNOWLEDGE HISTORY IN THIS
SPACE THAT IS ACKNOWLEDGING THIS
IS SPACE THAT HAS BEEN GOING ON
SINCE 1875 AND INVITED BY
COALITION LEADER AND ROY CHAVEZ
ACKNOWLEDGING IT LOOKING AT
IMPACT AT REMOVAL OF
[INDISCERNIBLE] AND DIDN'T GET
STUDY SET UP BUT REGARDED IT TO
MEASURE DAENL AND REPORTING BACK
FOUR ADDITIONAL EVENTS AND
PLANNING AND COALITION LEADING
THEM TO SAY WHAT ABOUT PAST
STUDIES?
PEOPLE ARE MOVING IN AREA AND
NEED TO MOTIVATE FAMILIES CH
CONTAMINATION AND IN THAT AREA
AND THROUGHOUT THE DATA SETS
BRINGING TO LIGHT AND COMMUNITY
MEMBERS SAYING HOW DO WE RAISE
AWARENESS AND LEADING TO SOIL
SHOP ELABORATING STATE AND
COUNTY HEALTH DEPARTMENT AND CDC
AND I WILL END WITH THIS AND I'M
GOING OVER AND THIS IS A QUOTE
THAT WE NEED TO SEE PROJECT
HARVEST THROUGH LENS OF THE
JORNL FLOYD PROTEST AND SYSTEMIC
RACISM AND HOW CITIZENS CAN SIGN
AND PROJECT EXPERIENCE TO HELP
ADDRESS THIS NOW AND COMING FROM
A PARTICIPANT OF THE PROJECT AND
HIGHLIGHTING THAT PARTICIPANT IS
PROPOSING TO EXPAND OUR SCIENCE.
NOT YOUR SCIENCE BUT OUR
SCIENCE.
THEY ARE SEEING OUR SCIENCE
HAVING A SOCIAL RESPONSIBILITY
AND WAY TO RESPOND TO SYSTEMIC
SOCIAL JUSTICE ISSUE.
THEY ARE SEEING OUR SCIENCES NOT
PERPETUATING HARM BUT BEING A
SOLUTION. THIS IS HIGHLIGHTING
THAT THROUGH A CO-CREATED
PROCESS WE CREATE NEW CULTURES
OF SCIENCE AND PARTICIPANTS
SEEING EFFICACY OF CO-CREATED
PROCESS AND WRAPPING UP I WANT
TO HIGHLIGHT THREE THINGS.
TRIPPING ON TEXT ENGAGE END
USERS AND TRUSTED COMMUNITY
MEMBERS HAVING A COCREATED
PROCESS VIEWING RETURN OF
RESULTS AS A BOUNDARY OBJECT AND
WITH THAT THANK YOU VERY MUCH.
>> THANK YOU. THAT IS REALLY
INSPIRING. WE ARE A LITTLE
DELAYED TODAY AND WE WILL SKIP A
5-MINUTE Q & A FOR SPEAKERS TO
HAVE MORE TIME FOR DISCUSSION
AND NEXT SPEAKER IS JULIA.
>>GOOD MORNING. ANONYMOUS AND
I LOVE HEARING ABOUT YOUR
BEAUTIFUL WORK.
IN THE EARLY 1990S CAPE COD
BREAST CANCER ENVIRONMENT STUDY
WAS TRYING TO LEARN THE MAJOR
SOURCES OF EXPOSURE TO ENDOCRINE
DISRUPTORS LINKED TO BREAST
CANCER COLLECTING DUST AND
BREAST CANCER SAMPLES --
COMPOUNDS AND OUR PARTICIPANTS
QUICKLY BEGAN TO ASK QUESTIONS
THAT BOILED DOWN TO THIS.
WHAT DID YOU FIND?
HOW MUCH IS THAT HIGH? IS IT
SAFE?
WHERE DID IT COME FROM?
WHAT CAN I DO?
WE HAND CURATED PERSONALIZED
REPORTS TO HIGHLIGHT FOR EACH
PARTICIPANT THE NOTABLE FINDINGS
FROM THEIR SAMPLES.
IT IS IMPORTANT TO REMEMBER THAT
IN EARLY DAYS WE WERE NOT
STARTING FROM SCRATCH BUT
DRAWING ON LARGE OVERLAPPING
LITERATURES THAT WERE INCLUDING
ENL NOTHING GRAPHIES AND
CONTAMINATED COMMUNITIES
PSYCHOLOGY STUDIES OF STRESS AND
COPING AND LITERATURE RISK
PERCEPTION AND COMMUNICATION AND
MODELS OF HEALTH BEHAVIOR
CHANGES WORKING ON ENVIRONMENTAL
JUSTICE AND EXPERIENCE IN
COMMUNITY-BASED PARTICIPATORY
RESEARCH AND MONICA, I'M FEELING
YOU ABOUT THE LAST SLIDE. I
DON'T KNOW.
SO, SINCE THEN WE AND OTHERS
HAVE ADDED SPECIFIC --
RESOURCE-SPECIFIC TO REPORT BACK
TO EXPOSURES OF EMERGING
CONTAMINANTS USING
MULTI-DISCIPLINARY EXPERTISE AND
COMMUNITY PARTNERSHIPS AND
CONDUCTED INTERVIEWS WITH
SEVERAL HUNDRED PARTICIPANTS
RESEARCHERS AND IRBS BEFORE AND
AFTER REPORT BACK CONDUCTED
FOCUS GROUPS WORKING WITH
ADVISORY COUNCILS AND CONDUCTED
COMMUNITY MEETINGS WITH RESULT
TO BE RETURNED AND CONDUCTED
EXTENSIVE ONE-ON-ONE USING OF
TEXTS AND GRAPHS AND NAVIGATION
AND NOW THAT DIGITAL REPORTS ARE
IN THE FIELD WE CAN USE
ANALYTICS TO SEE HOW PEOPLE
NAVIGATE THEM. AND WHERE THEY
SPEND THEIR TIME.
THERE ARE TWO ISSUES THAT CAME
UP RIGHT AWAY.
WELL, FIRST OF ALL, I WANT TO
SAY THAT IN THE EARLY
EXPERIENCES THERE WERE VERY
POSITIVE RESPONSES TO REPORT
BACK.
WE OBSERVED LEARNING WHEN PEOPLE
AND WHEN WE DID STUDIES OF
ENDOCRINE DISRUPTORS AND
CONSUMER PRODUCTS AND YOU HEAR
PEOPLE EXPERIENCING MAJOR
CONCEPTUAL SHIFTS ABOUT WHAT IS
POLLUTION AND BEGAN
BRAINSTORMING ABOUT PLANTS TO
REDUCE EXPOSURES AND PEOPLE
REFLECT ON FAMILY ILLNESSES WITH
-- AND UNDERSTANDING OF
UNCERTAINTY. WE HEAR PEOPLE SAY
I WONDER IF THIS ILLNESS WAS
RELATED TO THIS CONTAMINANT. I
KNOW YOU CAN'T MAKE THAT ONE T
ONE LINK.
AND WE SAW PEOPLE TAKING PRIDE
IN CONTRIBUTION TO SCIENCE AND
COMMUNITY HEALTH SEEING HOW DATA
WERE CONTRIBUTING TO THE WHOLE.
THIS IS SIMILAR TO WHAT MONICA
IS TALKING ABOUT AND PEOPLE
SUDDENLY UNDERSTANDING WHAT
SCIENCE IS DOING FOR THEIR
COMMUNITY. THERE WERE TWO
ISSUES COMING TO THE FLOOR RIGHT
AWAY. ONE IS THERE WAS A LOT OF
WORK TO PERSONALIZE
INFORMATION-RICH REPORTS AND
SECOND FROM THE PARTICIPANT'S
POINT OF VIEW THAT PAPER REPORTS
WHEN THERE ARE VERY LARGE
NUMBERS OF CONTAMINANTS HAVING
LIMITATIONS THAT WE FELT WE
COULD SOLVE WITH DIGITAL METHODS
THAT I WAS PARTICULARLY INSPIRED
BY THE STUDY BAY AREA PUBERTY
COHORT LED BY [INDISCERNIBLE]
AND REPORT FOR THAT STUDY WAS 60
PAGES LONG.
WE INTERVIEWED PARENTS AFTER
RECEIVING REPORTS FOR THEIR
GIRLS AND THEY WERE VERY
POSITIVE AND THEY WERE VERY WELL
RECEIVED AND IT WAS HARD TO FIND
THINGS.
SO, TO BENEFIT BOTH RESEARCHERS
AND PARTICIPANTS WE DEVELOPED
DERBY A SUFFER FRAMEWORK FOR
GENERATING PERSONALIZED EXPOSURE
REPORTS FOR COMPUTER AND
SMARTPHONE AND PRINT SCALEABLE
TO STUDIES OF ANY SIZE.
OUR GOAL WAS TO CREATE REPORTS
IT THAT WOULD BE MEMORABLE AT A
GIST LEVEL SUPPORTING
ENVIRONMENTAL HEALTH LITERACY
THAT ENCOMPASSES KNOWLEDGE AND
RESOURCES TO TAKE ACTION AND
WANTED REPORTS TO BE SUPPORTIVE
AND ADDRESS WHAT CAN I DO THAT
PEOPLE REALLY WANT TO KNOW
ABOUT?
WE WANTED REPORTS TO BE
COMPLETE. THERE ARE
PARTICIPANTS THAT WANT THAT
DEFINITELY BUT NOT OVERWHELMING.
WE USE COMPUTER SCIENCE CONCEPT
AND DETAILS ON DEMAND OFFERING
HEADLINES THAT PEOPLE CAN
NAVIGATE THROUGH TO A DEEPER
DIVE ACCESSING INFORMATION THAT
THEY ARE INTERESTED IN AND
AMOUNT OF INFORMATION THAT THEY
WANT TO SEE.
WE WANT TO REPORT TO BE
ADAPTABLEABLE TO COMMUNITY
CONTEXT.
SO, KEY FEATURES ACHIEVING THOSE
GOALS AND REPORTS THAT BEGIN
WITH A SUMMARY PAGE WITH
PERSONALIZED HEADLINES.
FOR EXAMPLE, IN THIS REPORT,
HEADLINES ARE THAT YOUR SAMPLE
HAD A HIGHER LEVEL OF
[INDISCERNIBLE] AND 95% OF
AMERICANS AND USING A COMPARISON
TO AMBIENCE DATA AND ANOTHER
HEADLINE WE CALLED THIS A HAPPY
HEADLINE AND YOUR SAMPLE HAD
LOWER LEVEL OF SUNSCREEN
CHEMICAL THAN MOST OTHERS IN
STUDY USING A COMPARISON TO THE
STUDY DISTRIBUTION AND
RESEARCHERS HAVE OPTIONS TO
INCLUDE AN ACTION WITH THE
HEADLINE AND SUMMARY PAGE
INCLUDES BOTH INDIVIDUAL AND
STUDIWIDE RESULTS AND HERE YOU
SEE STUDIWIDE RESULTS IN THE
BLUE BOX. AGAIN, YOU CAN CLICK
THROUGH TO MORE DETAIL AND
DETAILS ON DEMAND INCLUDE
INFORMATION ABOUT CHEMICAL
SOURCES AND WHAT EXPOSURE
REDUCTION AND WHAT IS KNOWN
ABOUT LINKS TO HEALTH. YOU CAN
SCROLL DOWN TO VISUALIZATION OF
RESULTS AND BENCHMARK COMPARISON
SHOWS BY THE RESEARCHERS.
HERE IS A EXAMPLE OF THE CAGE
FROM PROTECT.
YOU CAN SEE IT TALKS ABOUT
HEALTH EFFECT AND EXPOSURE
REDUCTION AND RESULTS THAT ARE
GRAPHED AT THE BOTTOM AND
RESEARCHERS HAVE ALSO ACCESS TO
COMMONLY ASKED QUESTIONS AND
CONTACT INFORMATION FOR THE
STUDY TEAM. THEY PROTECT
PERSONALIZED -- THEY CUSTOMIZE
THEIR REPORT BY ADDING VIDEOS.
THANK YOU TO NOVEL.
SO A LITTLE MORE ABOUT GRAPHS,
THEY CAN WORK FOR ANY CONTINUOUS
VARIABLE AND ARE DESIGNED TO
SUPPORT USEFUL COMPARISONS FOR
CHEMICALS WITHOUT CLINICAL
GUIDELINES AND TEAM CAN CHOOSE
RELEVANT BENCHMARKS AND DERBY
CALCULATES STUDY PARAMETERS AND
STUDY MEDIAN ADDING TO THE
GRAPHS AND ADDING RELEVANT DATA
FROM ANY OTHER BENCHMARK IF
THERE IS A REGULATORY GUIDELINE.
YOU CAN USE THAT. IN THIS GRAPH
FROM PROTECT, THE FLAG
REPRESENTS NHANES DATA FOR WOMEN
IN REPRODUCTIVE AGE.
YOU CAN SHOW MULTIPLE VISITS IN
THIS CASE EACH TRIMESTER OF
PREGNANCY AND YOU CAN STRATIFY
AND SHOW SUBGROUPS NEXT TO EACH
OTHER FOR COMPARISON. A GREAT
THING ABOUT DIGITAL GRAPHS IS
HOVERING A CLICK TO GET GRAPH
READING TIPS LIKE THE ONE YOU
SEE IN THE YELLOW BOX.
BECAUSE PEOPLE VALUE INFORMATION
TO REDUCE EXPOSURE WE DIRECT
NAVIGATIONS FOR THAT CONTENT.
WE DEVELOPED A SMARTPHONE
PROTOTYPE TO EXPAND ASSETS AND
COMMUNITIES WHERE THAT IS
PRIMARY WAY OF ACCESSING
INTERNET AND AMY WILL TALK MORE
ABOUT THAT, SO I WON'T.
THIS IS A RESEARCHER DASHBOARD
AND BEGINNING OF RESEARCHER
DASHBOARD OFFERING A STEP BY
STEP GUIDE FOR RESEARCH TO
UPLOAD DATA THAT YOU CAN USE OR
ADAPT THE HEADLINE RULES AND
DERBY WILL AUTOMATICALLY MATCH
YOUR CHEMICALS TO CONTENT
LIBRARY IF WE ALREADY HAVE
INFORMATION ON THEM.
ONCE YOUR REPORT IS -- YOU CAN
ADD CONTENT, OF COURSE. ADDING
NEW CHEMICALS WE WOULD BE HAPPY
TO SEE NEW CHEMICALS ADDED. WE
ARE ADDING CHEMICALS ALL THE
TIME WORKING WITH ADDITIONAL
STUDIES AND REPORT IS LAUNCHED
AND TRACKING PARTICIPANT'S
ACTIVITY AND EXPLORER BUILT INTO
RESEARCHER DERBY AND WE REALLY
LIKE IT AS A WAY TO EVALUATE
OUTLIARS AND ONE THING THAT IS
IMPORTANT ABOUT REPORT BACK FROM
CONTRIBUTING TO SCIENCE IS IT
REALLY FOCUSES YOUR MIND ON
OUTLIARS.
YOU KNOW THAT YOU WILL BE
REPORTING BACK TO THE PEOPLE
THAT YOU WANT TO BE AS HELPFUL
AS YOU CAN.
YOU CAN ALSO HIGHLIGHT GROUPS OF
HIGH -- GROUPS OF PEOPLE WHO ARE
HIGH IN ONE CHEMICAL AND SEE
WHAT ELSE THEY ARE HIGH IN AND
YOU CAN LOOK FOR PATTERNS OF
EXPOSURE AND MIXTURES AND YOU
CAN HIGHLIGHT AN INDIVIDUAL
PROFILE AS YOU SEE IN THE ORANGE
HERE THAT IS REALLY GREAT AND
NOT THAT MANY PEOPLE CALL THE
STUDY TEAM. WHEN THEY DO, THIS
IS A HANDY WAY TO SEE ALL THEIR
RESULTS.
SO, WE HAVE BEEN CONDUCTING
THREE EXPERIMENTS USING THIS
FUNDAMENTAL DESIGN TO TEST
DIFFERENT CONTENT AND FEATURES
IN DERBY.
THIS IS AN EXPERIMENT IN
CHEMICALS THAT ARE IN OUR BODIES
AND DESIGN STARTS WITH FOCUS
GROUPS OR ADVISORY COUNCIL.
REITIERATIVE ONE ON ONE
USABILITY TESTING THAT ARE
FORMATIVE RESEARCH METHODS THAT
CONTRIBUTE TO THE REPORT
DEVELOPMENT.
AND LIKE PARALLEL TO THE
CO-CREATION THAT MONICA IS
TALKING ABOUT.
THEN THERE IS A PRE-SURVEY AND
PARTICIPANTS GET RANDOMIZE THE
IN THIS CASE BEFORE DIFFERENT
CONDITIONS AND THERE IS A POST
SURVEY. I WILL TALK ABOUT THE
GRAPH READING TUTORIAL IN THIS
STUDY.
THERE WAS A THREE-MINUTE
INTERACTIVE TUTORIAL TO BUILD
PARTICIPANTS CONFIDENCE IN GRAPH
READING AND CURIOSITY ABOUT
THEIR RESULTS THAT WE WERE
TESTING THAT IS BASED ON
EDUCATIONAL THEORY OF PREDICT
AND OBSERVE AND EXPLAIN. IT
USES AN INDIVIDUAL'S REAL RESULT
FOR ONE CHEMICAL AND IN THE
PREDICT PHASE ASKING HOW MUCH
ENLIL PARA-BEN DID YOU EXPECT IN
YOUR SAMPLE TO CREATE CURIOSITY
ABOUT THE EXPOSURE?
IN THE OBSERVED PHASE, YOU GET
YOUR REAL RESULTS GRAPH FOR THAT
CHEMICAL AND THERE ARE FOUR
QUESTIONS.
TWO ARE RELATED TO UNDERSTANDING
X AXIS AND TWO ARE RELATED TO
MAKING COMPARISONS TO A
BENCHMARK. IF YOU MAKE A
MISTAKE, YOU GET A TIP. YOU GET
A NEW GRAPH TO TRY AGAIN ON
DIFFERENT CHEMICALS.
EXPLAINED PHASE GIVES PEOPLE A
CHANCE TO CONNECT RESULTS TO
BEHAVIORS THAT COULD BE
CONTRIBUTING THE USER CHECKS ALL
FROM A LIST OF POSSIBLE SOURCES
OF THAT CHEMICAL. THEY HAVE A
CHANCE TO COMMIT TO CHANGING OF
BEHAVIOR. WE KNOW IT IS A STEP
TOWARDS ACTUALLY CHANGING THAT
BEHAVIOR. HERE IS HOW IT WENT.
69% OF PARTICIPANTS ANSWERED ALL
FOUR GRAPH READING QUESTIONS
CORRECTLY ON THE FIRST TRY AND
94% GOT ALL CORRECT ON THE
SECOND TRY. WE LIKE IT TO BE
100%. WHEN YOU THINK ABOUT 21%,
GOT THREE RIGHT ON THE FIRST
TRY. THAT IS NOT TOO BAD AND
PARTICIPANTS WITH A COLLEGE
DEGREE SHOW GREATEST GAINS OF
81% ALL CORRECT ON A SECOND
TRIBE. WE ARE WORKING NOW ON
RESOURCES TO HELP WITH
CONVERSATIONS BETWEEN
PARTICIPANTS AND CLINICIANS THAT
CAME UP A LOT YESTERDAY.
MANY -- SOMETIMES PARTICIPANTS
TAKE RESULTS TO DOCTORS THAT ARE
NOT WELL PREPARED AND
CONVERSATIONS ARE LIKE A VERY
MIXED BAG AND SOME GOING WELL
AND SOME GOING NOT. WE ARE --
WITH ATS WE STARTED TO WORK ON A
PARTICIPANT SIDE TO HELP THE
PARTICIPANT MAKE THAT
CONVERSATION CONTRIBUTE TO
MAKING CONVERSATIONS GO WELL AND
WE WERE PARTICULARLY MOTIVATED
BECAUSE OF PFAS MONITORING
GUIDANCE GOING TO NATIONAL
ACADEMIES REPORT AND WILL BE
INCORPORATED IN FUTURE PFAS
REPORTS AND PREPARE PARTICIPANTS
TO MAKE IT USEFUL FOR THEM. WE
HAVE ALSO A STUDY GOING ON WITH
PROTECT AND AIR GO LED BY DR.
JENNY OHAYAN AND TAKING FROM
BOTH ENDS, PARTICIPANT END AND
CLINICIAN END AND DERBY REPORTS
CAN BE REPORTED INTO ELECTRON
MEDICAL RECORDS AND FUTURE WORLD
THAT ENVIRONMENTAL CHEMICALS
WILL BE PART OF PRECISION
MEDICINE AND I GET VERY EXCITED
WHEN PARTICIPANTS TAKE RESULTS
OUT INTO THE PUBLIC SPHERE AND
HAPPENS MORE THAN I CAN EVER
MANL AND SHARING ONE EXAMPLE IN
WORKER'S BIMONITORING
COLLABORATIVE IN PI ALONG WITH
FIREFIGHTER LEADER AND
FIREFIGHTERS CHANGE CLEANUP
PRACTICES AT WORK AND HOME AS
WELL AS ENGAGING IN POLICY
DISCUSSIONS ABOUT CLONABILITY
STAB
STANDARDS AND WHAT HAPPENS IS
OFFICE WORKERS GROUP COMPARISON
FIREFIGHTERS TOOK WORK TO BOSSES
AND ASKED FOR FLAME RETARDANT
FURNITURE AND QUESTIONS SIMILAR
TO WHAT CAME UP YESTERDAY AND
WILL COME UP AGAIN AND
RECOMMENDATIONS ARE FOR CONTENT
AND FOR ENVIRONMENTAL CHEMICALS
WE NEED TO OFFER CONTEXT ABOUT
HEALTH AND EXPOSURE SOURCES AND
EXPOSURE REDUCTION AND NEED TO
EXPLAIN UNCERTAINTY WITHOUT
UNDERMINING VALUE WHAT
SCIENTISTS DO KNOW ABOUT
CHEMICALS AND HEALTH AND NO
FALSE REASSURANCE, PLEASE.
WE -- IT MAKES SENSE TO OFFER
SHARED INFRASTRUCTURE AND DERBY
I THINK IS A GREAT MODEL AT
CONSORTIUM OR INSTITUTE LEVEL
ALONG WITH TRAINING AND
CONSULTATION WITH STUDY PIECE
AND TAILOR RESULTS REPORTS FOR
RESEARCH QUESTIONS COMMUNEDTIES
AND FOR THE FUTURE THAT I
BELIEVE THAT WE SHOULD REQUIRE
PLANNING TO REPORT BACK AT
PROPOSAL STAGE. FOR NOW, IT
WOULD BE GREAT TO REDUCE
BARRIERS TO USING SUPPLEMENTS
FOR THIS PURPOSE AND NOW IS A
CATCH 22 THAT SUPPLEMENTS ARE
FAVORED IF THERE IS STILL TIME
LEFT ON A PROJECT AND THERE IS
NOT A LARGE AMOUNT OF UNEXPENDED
FUNDS AND PROJECTS NOT PLANNING
TO REPORT BACK UNEXPENDED FUNDS
ARE COMMITTED ALREADY TO OTHER
ASPECTS OF THE SCIENCE AND THAT
IS A PROBLEM AND TIMING IS A
PROBLEM BECAUSE RESULTS TO
BECOME AVAILABLE TOWARDS THE END
OF A GRANT CYCLE.
YOU CAN SEE EXAMPLES WITH DERBY
REPORTS ON YOUR WEBSITE. I'M
VERY GRATEFUL TO MY TEAM AND
VERY DIVERSE AND EXPENSIVE TEAM
AND THANK YOU VERY MUCH TO ALL
STUDIES THAT ALLOWED US TO
COLLABORATE WITH THEM.
>>THANK YOU, JULIA. IT IS
REALLY COOL.
I HAVE QUESTIONS BUT WILL TAKE
THEM IN THE DISCUSSION SECTION.
BRIAN IS NEXT.
>>THANK YOU. I'M GLAD TO BE
ABLE TO STICK WITH YOU TODAY.
I WILL TALK TODAY ON A SOMEWHAT
HIGHER LEVEL AND I'M A DEDICATED
COMMUNICATION SCIENTIST DOING
RISK AND COMMUNICATION DECISION
SUPPORT WORK AND WILL TRY TO
PRESENT BROAD PRINCIPLES COMING
UP ANYTIME THAT SOMEBODY IS
TRYING TO GIVE PUBLIC AUDIENCES
TEST RESULT NUMBERS AND
QUANTITATIVE DATA OF THIS TYPE.
WE WILL MAKE SURE THAT WAY.
FIRST POINT I WANT TO MAKE IS
THERE IS VERY MANY TYPES OF
QUANTITATIVE TEST RESULTS WE
WANT TO COMMUNICATE AND LISTED A
FEW HERE BY NO MEANING
EXHAUSTIVE LIST.
THERE IS POLYGENIC -- THE
CHARACTERISTICS IS A RESULT IS
UNNUMBERED AND THIS NUMBER IS
NOT DIRECTLY OBSERVABLE BY
AUDIENCE WHO CAN'T GO OUT AND
SEE IT OR CAN'T GO OUT AND FEEL
IT. THEY ARE UNFAMILIAR WITH
THIS. THEY ARE NOT ALREADY
CALCULATED TO WHAT THE NUMBERS
MEAN. THIS MEANS THOUGH THERE
ARE REALLY BROAD PRINCIPLES
BECAUSE THESE REGARDLESS WHICH
TYPE OF DATA YOU ARE
COMMUNICATING, IT IS THE SAME
FUNDAMENTAL PROBLEM FROM A
COMMUNICATION STANDPOINT.
WHENEVER I TALK ABOUT THIS,
PEOPLE OFTEN TALK TO ME LIKE,
WELL, I WANT PEOPLE TO BE
INFORMED AND TO KNOW AND TO
COMPREHEND AND PAUSING FOR A
MOMENT REFLECTING, OKAY.
BUT WHAT IS THE SPECIFIC OUTCOME
YOU ARE TRYING TO ACHIEVE
THROUGH PROVISION OF THE
QUANTITATIVE DATA?
FROM ALL OF THE QUALITATIVE AND
BACKGROUND INFORMATION, ET
CETERA.
THIS IS NOT A TRIVIAL QUESTION.
I HAVE BEEN PART OF A MASSIVE
SYSTEMATIC REVIEW OF HEALTH DATA
COMMUNICATION LITERATURE WHEREIN
PROCESS OF RESULT OF MOVING
TOWARDS PAPERS NOW AND WE
IDENTIFIED 12 DISTINCT NUMBER
COMMUNICATION OUTCOMES THAT
RANGE FROM THINGS LIKE CAN I
FIND MY NUMBER?
CAN I REMEMBER MY NUMBER?
CAN I TELL WHETHER MY NUMBER IS
LARGER OR SMALLER THAN ANOTHER
ONE? CAN I CATEGORIZE IT OR DO
COMPUTATIONS ON IT? CAN I -- DO
I HAVE A CALCULATION IN TERMS
HOW BIG I FEEL OR SMALL THAT
NUMBER IS OR SENSITIVE IN
DDATIONS IN THAT NUMBER AND
LEADING TO BEHAVIOR MOTIVATION
AND TO PREFERENCE AND TO TRUST?
WHY AM I GOING THROUGH ALL
THESE?
THEY ARE FUNDAMENTALLY DIFFERENT
AND I WILL GIVE YOU A EXAMPLE.
WE CAN GO THROUGH MANY EXAMPLES
AND COMMUNICATE LEAD LEVELS ON
DRINKING WATTER THAT IS A
PROBLEM VERY MUCH IN THE NEWS IN
MICHIGAN. I MIGHT WANT THE
AUDIENCE TO REMEMBER WHAT THEIR
INDIVIDUAL LEAD LEVEL IS AND
WANT THEM TO KNOW WHETHER THEIR
LEVEL IS ABOVE OR BELOW
REFERENCE STANDARD OR KNOW WHAT
CATEGORY OF RISK IS ASSOCIATED
WITH THEIR LEVEL THAT IS NOT THE
SAME THING AS TO WHETHER IT IS
ABOVE ABOVE OR BELOW THAT
REFERENCE STANDARD. I MIGHT
WANT THEM TO FEEL WORRY ABOUT
THE LEVEL OR BE MOTIVATED TO
CHANGE AND/OR TRUST THAT THE
NUMBER IS ACCURATE. NOW, HERE
IS THE HARD PART ABOUT THIS.
WE WANT ALL OF THESE THINGS.
WE CAN'T HAVE THEM ALL.
THERE IS NO DATA COMMUNICATION
METHOD THAT OPTIMIZES
UNDERSTANDING OF ALL THOSE
OUTCOMES SIMULTANEOUSLY. WE
HAVE TO DECIDE WHICH ONE WE CARE
ABOUT MOST.
THIS IS A HARD THING IN THESE
CONTEXTS.
WE HAVE MANY GOALS AND
OBJECTIVES THAT ARE IMPORTANT.
THE TRUTH IS WHICHEVER FORMAT WE
PICK WE PRESENT INFORMATION THAT
WILL EMPHASIZE CERTAIN TYPES OF
COMPARISONS OR ABILITIES AND
DEEMPHASIZE OTHER ONES AND
COMMUNICATION METHOD THAT MIGHT
OPTIMIZE PEOPLE'S ABILITY TO
CLASSIFY THEIR RESULT IN TERMS
OF RISK LEVEL MAY WELL INHIBIT
MEMORY AND OR MAY NOT SUPPORT
TRUST IN THE SAME WAY AND WE
HAVE TO WRESTLE WITH THE
QUESTION WHAT IS OUR OBJECTIVE?
THIS IS PARTICULARLY IMPORTANT
WHEN WE THINK ABOUT THE
DIFFERENT NEEDS THAT DIFFERENT
AUDIENCES MIGHT HAVE. YOU KNOW,
MEANING OF SPECIFIC NUMERICAL
LEVEL OF WHATEVER IT IS, IS
DIFFERENT FOR DIFFERENT PEOPLE.
SOMEONE WHO IS PREGNANT, LET'S
SAY WE ARE TALKING ABOUT A
PARTICULAR LEVEL OF LEAD IN
THEIR WATER SOMEONE WHO IS
PREGNANT OR APPARENT OF AN
INFANT WILL AND NEEDS TO
INTERPRET THAT VALUE AS HAVING A
DIFFERENT MEANING THAN SAY AN
OLDER COMMUNITY DWELLING ADULT.
WHAT THAT MEANS IS A SELECTION
OF WHICH OUTCOMES IS MOST
IMPORTANT TO FOCUS ON AND HOW IT
INFLUENCES DESIGN OF OUR
COMMUNICATIONS MAY OFTEN NEED TO
BE DIFFERENT FOR DIFFERENT
POPULATIONS.
THE OTHER CORE QUESTION THAT
COMES UP IS A PHENOMENON THAT
THIS IS A TERM THAT COMES OUT OF
MARKETING LITERATURE CALLED
INFORMATION EVALUABILITY AND
NEVER FIGURED OUT A BETTER WAY
TO DESCRIBE WHAT THIS PHENOMENON
IS THAN AN OLD FOX TROT CARTOON
AND JASON IS GOING TO A GUM BALL
MACHINE PUTTING MONEY IN AND
GETTING TWO GUM BALLS THINKS HE
IS ECSTATIC AND BEATING THE
SYSTEM UNTIL HE DISCOVERS HE IS
SUPPOSED TO GET THREE GUM BOYLES
AND NOW HE IS PISSED. NOTICED
THAT HIS RESULT HASN'T CHANGED.
HE HAS TWO GUM BOYLES AND
NOTHING IS DIFFERENT IN PHYSICAL
EXPERIENCE IN OUTCOME AND
EMOTIONAL EXPERIENCE OF THAT IS
RADICALLY DIFFERENT THAT IS
UNDERLYING IDEA OF INFORMATION
OF VALUABILITY AND MEANING WE
TAKE AWAY FROM QUANTITATIVE DATA
IS EFFECTIVE ABOUT I WHAT WE
COMPARE IT AGAINST AND WHAT
EXPECTATIONS ARE, ET CETERA.
QUICK GAME THAT I WILL DO THIS
IN THE CONTEXT OF THIS ROOM
LITERALLY. I WANT US TO THINK
ABOUT IS THIS NUMBER GOOD ORE
BAD?
QUICK REACTIONS.
7 PARTS PER BILLION OF LEAD IN
HOUSEHOLD DRINKING WATER, GOOD
OR BAD?
KEY QUESTION TO ASK IS IF YOU
WRPT ABLE TO ANSWER THIS AFTER
FIRST 5 SECONDS OF LOOKING AT
THAT NUMBER, WHAT ARE YOU
FEELING RIGHT NOW?
HERE IS ANOTHER ONE. BASEMENT
RADON LEVEL OF THREE
[INDISCERNIBLE] PER LITER OF
AIR. NOT SURE. I SEE HEADS
SHAKING. IS THAT GOOD?
I KNOW ALL REFERENCE STANDARDS I
CAN PROVIDE THEM IN A MOMENT.
NOTICE THAT THE POINT HERE IS
NOT THAT IT IS OBVIOUS. I HAVE
THE NUMBER. YOU HAVE THE VALUE.
YOU MAY NOT KNOW WHAT IT MEANS
FOR YOU.
IT IS A SLEEP QUALITY INDEX OF
8. DID YOU GET A GOOD NIGHT'S
SLEEP?
NO. YOU WOULDN'T NECESSARILY
KNOW THAT FROM THIS.
ONE MORE. INFANT TODD LETTER
DEVELOPMENTAL SCORE OF 92 SOUNDS
HIGH TO ME AND MIGHT BE GOOD BUT
I HAPPEN TO KNOW THIS IS NORMS
TO 100 THAT IS NOW BELOW
AVERAGE. ET CETERA. YOU TAKE
THE POINT.
SO, THE KEY IDEA TO WRESTLE WITH
FROM A COMMUNICATIONS STANDPOINT
IS HOW DO EXPERTS INTERPRET DATA
AND KNOW IT THAT ENABLE THEM TO
TRANSLATE THE NUMBER INTO
MEANING?
ANSWER IS CONTEXT.
YOU KNOW, IF THERE IS A SECOND
CORE IDEA I WANT TO COMMUNICATE
TODAY IS THE IDEA IF DESIGNING
NUMBER OF COMMUNICATIONS,
CONTEXT IS EVERYTHING AND IN
MANY WAYS MORE IMPORTANT THAN
NUMBER ITSELF WHAT IS CONTEXT
YOU ARE PROVIDING SHAPING
UNDERSTANDING THAT AUDIENCES
WILL TAKE AWAY?
I WILL GIVE YOU LOTS OF
DIFFERENT WAYS OF
CONTEXTUALIZING DATA AND YOU
WON'T REMEMBER ALL OF THE LISTS
AND SHOWING EXAMPLES DRAWING
FROM RESEARCH WE HAVE DRAWN
LOOKING AT COMMUNICATION OF
BIOMARKING TESTING THAT IS
APPLICABLE REGARDLESS OF WHAT
TYPE OF DATA YOU ARE
COMMUNICATING AND ACTION
THRESHOLDS WHEN SUCH TYPES OF
THRESHOLDS EXIST THEY ARE
POWERFULLY INFLUENTIAL ON
PEOPLE'S UNDERSTANDING. NOTICE
WE HAVE ACTION THRESHOLDS FOR A
VARIETY OF THINGS AND TALKING
ABOUT LEAD IN WATER AND BLOOD
AND RADON SO THAT THREE WAS
BELOW ACTIONING THRESHOLD SET OF
EPA FOR RADON AND SLEEP QUALITY
INDEX AND ONE COMMON THRESHOLD
ACTION ON THAT IS 5 AND 821 THAT
MIGHT BE WELL ABOVE THAT BUT IS
NOT NECESSARILY GOOD. OKAY?
THESE ARE THE KINDS OF
QUESTIONS.
IF WE HAVE THIS TYPE OF
INFORMATION, PROVIDING IT
CLEARLY ENABLES PEOPLE WITH
LOWER LITERACY AND NUMER ASSCY
SKILLS TO KNOW WHICH SIDE THEY
FALL ON AND THERE ARE OTHER
METHODS TO USE TO COMMUNICATE
DATA EACH THOUGH WE DON'T HAVE
ABSOLUTE THRESHOLDS TO ESTABLISH
AND SIMPLY SHOWING RANGE OF
VARIATION. I WILL DIVE FAIRLY
DEEP ON THIS. WHAT RANGE OF
VARIATION BECOMES A REALLY
IMPORTANT QUESTION?
HERE IS A STANDARD CLINICAL TEST
RESULT. PLATELET RESULTS.
IN THIS PARTICULAR CASE,
SOMEONE HAS A PLATELET VALUE OF
135 AND GIVEN NORMAL RANGE OF
150 TO 400. YOU HAVE TO HAVE
FAIRLY SUBSTANTIAL NUMER ASSCY
SKILLS TO DO THIS TEST AND TAKE
YOUR NUMBER AND RECOGNIZE WHAT
YOU NEED TO DO IS COMPARE TO THE
STANDARD RANGE AND DETERMINE
WHETHER YOUR VALUE FALLS INTO
THE STANDARD RANGE OR OUT. I
CAN TAKE THE SAME DATA AND
PRESENT IT TO YOU IN A SIMPLE
NUMBER BER LINE STRUCTURE AND
YOU GET MORE AND NOT ONLY HAVE
NORMAL RANGE BUT INSTANTLY
RECOGNIZE IN A SPATIAL SENSE
THAT, THAT 135 IS VERY CLOSE TO
THAT AND SENSE OF RANGE OF WHAT
POSSIBLE VARIABILITY MIGHT BE.
I WILL GIVE ANOTHER EXAMPLE,
THINK OF A1C AND GLUCOSE CONTROL
AND DIAGNOSING DIABETES, ET
CETERA. 6.17, WHAT SHOULD I
FEEL ABOUT THIS?
IF I DROP INTO A NUMBER LINE
HERE AND I HAVE COLOR COATED
CATEGORIES AND VALUES AND LABELS
PROVIDED I HAVE A GREATER SENSE
AS TO WHAT I SHOULD BE FEEL
BEING THIS RESULT AND I WILL
SHOW YOU SAME RESULT IN A
SLIGHTLY DIFFERENT WAY. WHAT
DID I DO HERE?
THIS IS THE SAME RESULT BUT NOT
SAME GRAPHIC.
I HAVE GIVEN YOU THE SAME
CATEGORIES AND SAME THRESHOLDS
AND EVERYTHING THE SAME EXCEPT
THAT THIS GRAPH FOES 4 TO 9 AND
3 TO 13 AND WHATEVER YOU MIGHT
BE THINKING ABOUT THIS IN TERMS
OF LEVEL OF RISK YOU ARE FACING
IS MY GUESS IS YOU ARE MORE
CONCERNED WITH THE TOP GRAPH
THAN YOU ARE THE BOTTOM AND
SIMPLY CHANGING THE SCALE IS
SHIFTING THE PERCEPTION AND WE
HAVE DONE INTERVIEW STUDIES
USING GRAPHICS PEOPLE TALK IN
SPATIAL METAPHORS AND TALK ABOUT
BEING CLOSE TO THE ENL OF THE
CLIFF AND FALLING OFF AS A WAY
OF REPRESENTING IN A SORT OF
SPATIAL SENSE A DEGREE OF RISKS
THAT THEY FACE.
THERE IS LOTS OF OTHER REFERENCE
POINTS WE MIGHT WANT TO DEFINE.
LET'S SAY GOALS.
NOW, HERE IS A GRAPHIC WE HAVE
TESTED.
IT SHOWS A HEEBO GLOBIN RESULT
WITH STANDARD RANGE AND GOAL
RANGE OF THOSE THAT HAVE BEEN
DIAGNOSED WITH TYPE 2 DIABETES.
IN COMPARISON, WE TESTED WHETHER
OR NOT THIS GRAPH PERFORMED
BETTER OR WORSE THAN A SIMPLER
GRAPH AND ONE THAT SIMPLY TOOK
OUT THE NORMAL RANGE AND GAVE
YOU ONE REFERENCE STANDARD TO
COMPARE YOURSELF AGAINST.
IT MATTERED.
COMPREHENSION WAS HIGHER WHEN
YOU HAD 1 IN FOUR REFERENCE
STANDARDS THAN WHEN YOU HAD
MULTIPLE ONES.
WHY?
IT WAS MUCH CLEARER WHAT
DIRECTION YOU WERE SUPPOSED TO
COMPARE AGAINST. SIMPLICITY
APPROVED PEOPLE'S ABILITY TO
DERIVE A TARGET INTERPRETATION.
I WILL GIVE YOU ONE MORE
EXAMPLE.
THIS IS AMINO TRANSFERASE AND
IMAGINE YOUR RESULT IS 80 AND
GAVE YOU STANDARD RANGE OF 10 TO
40 IF YOU ARE A NORMAL PERSON
AND LOOKING AT THIS, 2 TIMES TOP
OF STANDARD RANGE HAS TO BE BAD.
WELL, MAYBE.
WHY DID I SHOW THE GRAPHIC GOING
UP TO 400?
WHEN WE HAD CONVERSATION WITH
CLINICIANS ABOUT WHAT THEY
WANTED TO COMMUNICATE ABOUT TEST
RESULT TO PATIENT POPULATION
THEY REACHED OUT TO ONE THING
THEY KNEW THIS VALUE COULD
INCREASE GETTING 150 OR 250
BEFORE YOU FACE SIGNIFICANT
IMMEDIATE RISK IS NOT OBVIOUS
UNLESS YOU PROVIDE A VISUAL CUE
TO CONVEY THAT.
THERE IS A NICE TECHNIQUE TO
USE.
DROPPING IN A LITTLE MARKER HERE
TESTED WHETHER OR NOT A LITTLE
LINE WAS DRAWN SAYING MANY
DOCTORS ARE NOT CONCERNED UNTIL
HERE. HOW WOULD THIS SHIFT
PEOPLE'S PERCEPTIONS? IT DOES
WHAT WE WOULD WANT IT TO AND
DOESN'T CHANGE RESPONSES TO
EXTREME VALUES AND THERE IS NO
EFFECT OF THAT THRESHOLD.
FOR LESSER VALUES, IT INCREASES
SENSITIVITY AND PEOPLE ARE MORE
CHANGING HOW RESPONSES ARE
DEPENDING UPON WHAT POSITION OF
THEIR VALUE IS IN THIS CASE.
NOW, WHENEVER I TALK ABOUT THIS
PEOPLE OFTEN ASK P ME, OKAY.
THESE TECHNIQUES ARE PROVIDING
CONTEXT AND THEY WILL REALLY
PUSH PEOPLE TOWARDS SORTS OF
INTERPRETATIONS AND ISN'T THERE
A WAY TO COMMUNICATE THIS AND I
CAN JUST PROVIDE RESULTS AND
HAVE THEM KNOW ABOUT WHAT
RESULTS ARE AND NOT HAVE THIS
BIAS?
UNFORTUNATE TRUTH IS THIS TYPE
OF DATA COMMUNICATION IS ALWAYS
BIASED AND FRANKLY MANIPULATIVE
AND WE ARE SHAPING WHAT THE
AUDIENCE WILL TAKE AWAY FROM IT
AND PROBLEM IS IF NOT WHETHER WE
CAN HAVE UNBIASED COMMUNICATION
BUT PROBLEM IS WHEN WE WILL BE
COMMUNICATING WHAT DESIGN
CHOICES WE MAKE INFLUENCE WHICH
MESSAGE PEOPLE TAKE AWAY OR
CANNOT PROVIDE CONTEXTUAL
INFORMATION AND CANNOT PROVIDE
ACTION THRESHOLDS AND KNOW THAT
WE ARE CREATING DISPARITIES
BETWEEN THOSE MEMBERS OF THE
POPULATION WITH ACCESS TO SUCH
CONTEXT AND THOSE WHO DO NOT. I
WILL END WITH MY TWO QUESTIONS
THAT I THINK WE MUST ALWAYS ASK
OURSELVES WLFR WE DESIGN DATA
COMMUNICATIONS OF THIS TYPE.
FIRST IS WHAT IS THE OUTCOME
THAT THE AUDIENCE NEEDS THE
MOST? DO THEY NEED TO CLASSIFY
OR BE MOTIVATED? WHAT MATTERS
MOST FOR THIS AUDIENCE AT THIS
POINT IN TIME? IT WILL BE
DIFFERENT FROM ONE AUDIENCE TO
ANOTHER OR ONE POINT IN TIME TO
ANOTHER.
ONCE WE HAVE MADE THAT CHOICE,
WHAT IS CONTEXTUAL INFORMATION
THAT MOST SUPPORTS THAT MESSAGE?
THAT IS THE BROAD PRINCIPLES
THAT I THINK APPLY HERE. I SEE
LOTS OF THESE IDEAS REFLECTED
ALREADY IN DERBY AND OTHER
COMMUNICATIONS OF THIS TYPE.
CHALLENGE IS IT REQUIRES
INTENTIONALITY AND RECOGNIZING
THAT THERE IS NO ONE-SIZE FITS
ALL. WE HAVE TO ADJUST WHAT WE
ARE DOING FROM ONE MOMENT TO
ANOTHER TO ACHIEVE OUTCOMES WE
WANT. I WILL LEAVE IT THERE.
THANK YOU.
>>THANK YOU, BRIAN.
NEXT SPEAKER IS AMY WHO IS
JOINING US REMOTELY WITH
TECHNOLOGY THAT IS
[INDISCERN
[INDISCERNIBLE].
>>CAN YOU HEAR ME?
I'M HERE, BUT NOBODY CAN HEAR
ME.
>>NEXT SLIDE HERE IS WHAT THE
SMARTPHONE PROTOTYPE LOOKS LIKE
WITH FUNDAMENTALLY THE SAME
CONTENT AS COMPUTER-BASED
REPORTS BUT IS [INDISCERNIBLE]
AND HAS A LITTLE MORE LINEAR
NAVIGATIONS THAT YOU CAN SEE
AGAIN. PEOPLE GET -- IT HAS
DETAILS ON DEMAND CONCEPT WHERE
THERE IS A VERY BRIEF SUMMARY OF
OVERALL STUDY RESULTS THAT WILL
BE YOUR PERSONAL RESULTS AND YOU
CAN CLICK FOR MORE INFORMATION.
NEXT SLIDE.
HERE AGAIN YOU SEE WHAT THE MORE
DETAILS LOOK LIKE. NEXT SLIDE.
NEXT SLIDE.
OH, OKAY. RACHEL, DO YOU WANT
TO DO THE COLLECTIVE ACTION?
>>YEAH.
>>WE HAVE FOCUS GROUPS AND
RACHEL AND I MODERATED THEM
ALONG WITH ANOTHER MODERATOR.
TAKE IT AWAY.
>>YEAH. SO, THIS WENT INTO OUR
THINKING ABOUT THE DESIGN OF THE
SMARTPHONE BASE WHICH WAS REALLY
TRYING TO UNDERSTAND PEOPLE'S
MOTIVATIONS FOR ENTERING THE
RESEARCH.
THE COHORT AND ALSO WHAT
MOTIVATES THEM TO TAKE ACTION TO
PROTECT THE HEALTH OF THEIR
FAMILY AND ALSO JUST GENERALLY
THEIR SENSE AND ABILITY AND
MOTIVATION FOR SPECIFIC
PARTICIPATION AND COLLECTIVE
ACTION AND THIS IS WHAT ACTION
IS.
>>SHE SAYS SHE CAN HEAR US.
>>OKAY. GREAT.
>>MAYBE AMY WILL CHIME IN AS
WELL.
>>GREAT. AND ALSO JUST ALL OF
THE FEELINGS RESTRICTED AND TIME
STRABT FOR TAKING ACTION AND
LOOKING FOR STRAIGHTFORWARD
INFORMATION THAT WE WERE
CONDUCTING THESE IN THE HEIGHT
OF THE PANDEMIC AND PARTICULARLY
[INDISCERNIBLE].
>>AND ALSO JUST IN WHAT CONTEXT
ARE YOULE TO PUSH FOR EXPOSURE
REDUCTION TO CHEMICALS?
>>NEXT SLIDE.
SO, I TOLD YOU THAT THIS
EXPERIMENT HAD FOUR CONDITIONS.
I TALKED ABOUT THE TESTING OF
INTERACTIVE READING TUTORIAL AND
TESTED REMINDER E-MAILS GOING
OUT TO STUDY PARTICIPANTS WHO
GET ACCESS CODE BY E-MAIL AND
ACCESS CODES TO RECEIVE REPORTS.
THEN WE SENT A REMINDER THREE
DAYS LATER AND THOSE WHO HAD NOT
OPENED THEIR REPORT.
THAT WAS FOLLOWED BY
ENCOURAGEMENT TO TAKE INDIVIDUAL
ACTION AND E-MAIL THAT
COMMUNICATED OPPORTUNITIES FOR
COLLECTIVE ACTION.
IN THIS CASE, THIS EXAMPLE IS
ABOUT GETTING PFAS OUT OF FOOD
PACKAGING. NEXT SLIDE.
NEXT SLIDE.
PART OF THE POST SURVEY, WE ASK
PEOPLE HOW THEY -- WHETHER THEY
LIKE THEIR REPORT. THESE ARE
RESULTS. YOU CAN SEE THAT
PEOPLE DID APPRECIATE RECEIVING
THEIR PERSONAL REPORTS AND 83%
STRONGLY AGREED AND 16% SOMEWHAT
AGREED AND THEY SAID THAT
REPORTS HELPED THEM UNDERSTAND
CHEMICAL EXPOSURES AND
INFORMATION WAS USEFUL TO THEM
AND LOOKED NICE. IT WAS
CONVENIENT SO MOST PEOPLE --
NEARLY EVEN SAID IT WAS
CONVENIENT TO GET IT ON A
SMARTPHONE AND THOSE WHO HAD
GRAPH READING EXERCISE SAID IT
HELPED THEM. WE SAW EMPIRICALLY
THAT IT HELPED THEM.
INTERESTINGLY THEY APPRECIATED
RECEIVING FOLLOW-UP E-MAILS AND
STUDY TEAM WAS WORRIED THAT
E-MAILS WOULD BE ANNOYING AND IT
TURNED OUT TO BE TRUE WHICH WAS
INTERESTING. NEXT SLIDE.
I DON'T KNOW. RACHEL, YOU WANT
TO DO THESE?
>>JUST THINKING ABOUT THE NEXT
LEVEL OF REPORT BACK THAT WE
HAVE BEEN TALKING ABOUT, WHICH
IS TRYING TO UNDERSTAND HOW TO
REPORT BACK IN INCLUSIVE
RETENTION AND PEOPLE MENTIONED
YESTERDAY THAT MANY PEOPLE
JOINED STUDIES TO
[INDISCERNIBLE] IMPROVEMENT THAT
THEY WOULD GET INFORMATION BACK
WHICH IS ABOUT THEIR DATA AND
RETENTION KNOWING THAT THEY WILL
GET ONGOING [INDISCERNIBLE].
AND ALSO THINKING ABOUT HOW TO
NAVIGATE AND [INDISCERNIBLE] AND
GIVEN RISE TO AGNOSTIC CHEMICAL
METHANE YAEN PROCEDURES AND
SCREENING OR OTHER CLINICAL
MARKERS WHERE WE HAVE DATA AND
HOW WE [INDISCERNIBLE].
>>NEXT SLIDE.
THIS IS A SHOUTOUT TO DERBY THAT
I APPRECIATE AND RECOMMENDATION
AND TURNAROUND TIME BETWEEN
BIOSPECIMEN COLLECTION AND
RESULTS REPORTING AND GETTING
EFFICIENT ABOUT COMMUNICATION
CAPABILITIES USING E-MAIL OR
TEXT MESSAGES WAYS TO GET
EFFICIENT PERSONAL VIEWS
SHOULDN'T LIMIT YOURSELF AND
STEPS TO REDUCE EXPOSURE AND
COLLECTIVE ACTION. NEXT SLIDE.
THIS IS THE WONDERFUL TEAM AND
GRATITUDE FOR THIS SUPPORT FROM
ECHO OIA AND FOR AMY'S WORK ON
THIS.
>>THANK YOU FOR STEPPING IN AND
PRESENTING THE SLIDES FOR US.
IF WE CAN KICK OFF OUR
DISCUS
DISCUSSION.
THANK YOU SO MUCH. EXCITING TO
BE HERE. CAN YOU HEAR ME OKAY?
I'M CAR EVEN WATSON AND CHIEF
ENGAGEMENT OFFICER AND I WILL
USE MY 5 MINUTES DIFFERENTLY TO
TALK ABOUT GENETIC RETURN OF
RESULTS AND TALK ABOUT IT FROM
LENS OF BEING A PARTICIPANT IN
THE RESEARCH PROGRAM TO TALK
ABOUT CONTEXT THAT MATTERS AND I
WILL HIGHLIGHT THINGS WE HEARD
THROUGHOUT THE AFTERNOON AND HOW
THINGS INFORMED CONTEXT WHAT WE
HEAR AS A PARTICIPANT. I'M
CHIEF ENGAGEMENT OFFICER FOR NIH
ALL RESEARCH OFFICE PROGRAM AND
SPENT 17 YEARS CONDUCTING -- I'M
ALSO THE SON OF BIR THAT WATSON
WHO DIED FROM BREAST CANCER WHEN
SHE WAS 49 YEARS OLD WHEN I WAS
7 AND I'M SON OF TOMMY WATSON
WHO DIED FROM TYPE 2 DIE BEET
WHYIZE AND COLORECTAL CANCER IN
2009 AND BROTHER OF TOMMY WATSON
JUNIOR WHO DIED FROM COLORECTAL
CANCER IN 2021 AND CONTEXT WHICH
I HEARD RETURN OF VALUE AND
CONTEXT WHEN AND HOW IS ALL OF
US RESEARCH PROGRAM AND I HAVE
BEEN INVOLVED WITH THE PROGRAM
SINCE INCEPTION AS A COMMUNITY
MEMBER AND HAVE FOR TUNE BEING
BOARD SHARE AND IT HELPED INFORM
COMMUNITY ENGAGEMENT STRATEGY
FOR RETURN OF RESULTS FOR ALL OF
US AND VOCAL COMMUNITY ENGAGED
RESEARCHER SO FOCAL THEY INVITED
ME TO GET ON OTHER TABLE BEING
CHIEF COMMUNITY OFFICER AND JOB
OPEN FOR ENGAGEMENT OFFICER I
STOOD UP AT MEETINGS BASED ON
DIGITAL DIVIDE OF PROGRAM NOW
AND GAPS IN PROGRAM IN TERMS OF
LANGUAGE GAPS AT THAT TIME
WORKING ON SPANISH CONSENT AND
SPANISH TRANSLATION AND I GOT UP
AND BOLDLY SAID THIS PROGRAM IS
NOW SOME OF US INSTEAD OF ALL OF
US. IMAGINE THAT STATEMENT
HAUNTING YOU AT YOUR INTERVIEW
FOR THE JOB. I SAID THAT THESE
PEOPLE WON'T HIRE ME. I CHANGED
THE NAME OF THEIR PROGRAM TO
SOME OF US INSTEAD OF ALL OF US.
THEY SAID LET'S BRING THEM ON
THIS SIDE OF THE TABLE.
SO, THURSDAY OR ON WEDNESDAY AT
445 P.M., I RECEIVED MY GENETIC
COUNSELING I HAD MY SESSION
BECAUSE WE RETURNED OUR RESULTS
AND IN THE ALL OF US RESEARCH
PROGRAM NOW WE HAVE TWO TYPES OF
RESULTS BEING RETURNED
HEREDITARY DISEASE RISK
INFORMATION AND DNA --
INFORMATION ABOUT GENES AND
PHARMACY AND GENES AND DRUGS;
RIGHT? I DIDN'T GET HEREDITARY
RISK RESULTS BACK BUT ANCESTRY
RESULTS BACK TOLD ME SOMETHING I
KNEW BEEN A PARTICIPANT AND --
NOT PROMOTING ANYTHING HERE.
I'M SAYING I LOGGED INTO A
PARTICULAR PLATFORM AND I KNEW
THAT I HAD A CERTAIN AMOUNT OF
AFRICAN ANCESTRY OR WEST AFRICAN
ANCESTRY AND CANCER DISPARITIES
RESEARCH WE TALKED ABOUT WORK
ABOUT HOW ANCESTRY INFORMS
PROSTATE CANCER RISKS AND 75%
AFRICAN ANCESTRY AND EUROPEAN
ANCESTRY AND I HAPPEN TO BE
IRISH AND HAPPY ST. PATTIES DAY.
I WANTED TO KNOW THREE
MEDICATIONS TALKING ABOUT ME
BEING AN INTERMEDIATE OR CERTAIN
TYPE OF METABOLIZER AND
PARTICIPANT WHEN PARTICIPANTS
RETURNED TO ME LESS CONCERNED
ABOUT ME AND HOW I WILL
TRANSLATE INFORMATION TO MY
SISTER WHO DOES NOT GO TO THE
DOCTOR ON A REGULAR BASIS AND
WHO HAS HIGH LEVELS OF MEDICAL
MISTRUST THAT IS ACTUALLY
JUSTIFIED BECAUSE SHE WAS OLDER
WHEN MY BOTHER DIED FROM BREAST
CANCER REMEMBERING SYSTEMIC
RACISM THEY EXPERIENCE DUE TO
HEALTH CARE SYSTEM AND HER
EXPERIENCE WITHIN THE HEALTH
CARE SYSTEM ARE DIFFERENT THAN
MINE AND I WAS LISTENING FOR
RESULTS IN WAY WHICH I CAN
TRANSLATE THEM BACK TO HER. I
KNEW I WOULD HEAR SOMETHING IN
THE SETTING SHE WOULD LIKELY
NEVER HEAR AND I KEPT REMINDING
MYSELF THAT RESULTS I'M HEARING
ARE RESEARCH RESULTS AND HOW
WILL I TRANSLATE RESULTS BACK TO
HER IN A CLINICAL CONTEXT? IS
IT ETHICAL FOR ME TO REPORT
RESULTS BACK TO HER? TALK TODAY
A GENETIC COUNSELOR ABOUT
RESULTS I FOUND WHY WOULD I TEST
7 GENES HOW MY DNA REACTS WITH
CERTAIN MEDICATIONS AND HE SAID
I HAVE TO GO BACK AND FIND OUT
ABOUT THAT. THAT WAS A CRITICAL
MOMENT FOR ME. I NEEDED HIM TO
BE AN EXPERT IN THAT MOMENT AND
FOR CONCERNS AND FEARS TO BE
CALM AND NEEDED THEM TO BE
RETURNED BACK TO ME IN THE FORM
OF CONTEXT AND SHARED THAT VERY
PERSONAL EXPERIENCE WITH YOU AND
COMBINING WITH WHAT WE ARE DOING
IN ALL OF US RESEARCH PROGRAM TO
THINK ABOUT THINGS IN TODAY'S
CONVERSATION AND ONE OF FIRST
THINGS WAS EQUITY IN RELATION
AND RETURN OF RESULTS THINKING
ABOUT EQUITY THINKING ABOUT OUR
DISCUSSION AND WHO IS NOT AT
TABLES AND DOESN'T HAVE ABILITY
TO BE AT TABLE TO GET RESULTS
RETURNED AND RETURNING RESULTS
ELECTRONICALLY OR VIA E-MAIL OR
PHONE OR POPULATIONS WHOSE PHONE
NUMBERS CHANGE ON A REGULAR
BASIS I WAS FORTUNATE ENOUGH TO
DO WORK IN CONTEXT OF FAIRLY
QUALIFIED HEALTH CENTERS THAT
THEY HAD PHONE NUMBER CHAFKS ON
AVERAGE OF EVERY 13 MONTHS ON
AVERAGE, A DIFFERENT PHONE
NUMBER FOR MANY OF OUR -- OVER
50% OF PATIENT POPULATIONS
MEANING WE HAD TO HAVE REGULAR
COMMUNICATION WITH THEM. IN
TERMS OF EQUITY AND RETURN OF
RESULT AND POO ES THAT CAME UP
TODAY IS SOCIAL AND CULTURAL
POLITICAL CONTEXT AND SOCIAL
DETERMINANTS OF HEALTH -- THAT
DETERMINE WHERE AND HOW SOMEONE
CAN GET RESULTS AND DO THEY LIVE
IN A RURAL COMMUNITY OR
COMMUNITY AREA THEY MIGHT NOT
HAVE BROADBAND ACCESS TO THINK
ABOUT HOW THINGS ARE RETURNED TO
THEM FROM RESULTS TO OTHER
THINGS OF COMMUNICATION AND
OTHER PIECE OF THIS IS
RESPONSIVE TO SYSTEMIC SOCIAL
INJUSTICES AND UNDERSTANDING
THAT MANY PARTICIPANTS WILL HEAR
WHAT WE GIVE THEM BACK IN THE
CONTEXT IN WHICH THEY LIVE
BREATHE EAT SLEEP AND PRAY AND
OTHER THINGS IN THE CONTEXT AND
RESULTS COME BACK IN THE FORM OF
CONTEXT AND RISK PERCEPTION AND
RISK OF COMMUNICATION AND I WILL
END WITH ONE OF OUR LAST
PRESENTERS TALKING ABOUT HOW
NEED TRANSLATES IN A RESEARCH
SETTING AND THERE IS A CONTEXT
WHAT WE NEED AND HAVE TO RETURN
BACK AND HOW DOES NEED TRANSLATE
IN A RESEARCH SETTING AND IS A
LITTLE ABOUT MY EXPERIENCE IN
THE ALL OF US RESEARCH PROGRAM
AND HOW AND WHEN WE ARE
RETURNING RESULTS AND WE RETURN
RESULTS TO OVER 15,000
PARTICIPANT AS AND ARE IN
PROCESS OF MAKING SURE
PARTICIPANTS GET RETURN OF
RESULTS BEFORE END OF 2024 IN
SOME WAY.
WHEN HOW AND WHY IN CONTEXT
TRULY MATTERS AND THANK YOU FOR
THE FIVE MINUTE DISCUSSION AND
LOOK FORWARD TO ENGAGING WITH
YOU IN A LARGER DISCUSSION.
>>THANK YOU. REALLY NICE
BRINGING IT FULL CIRCLE AND
BEGINNING WITH ENVIRONMENTAL
JUSTICE AND BRINGING PANELISTS
UP.
ANY QUESTIONS?
>>[INDISCERNIBLE].
I WANT TO SAY [INDISCERNIBLE].
>>[INDISCERNIBLE].
>>THAT IS AN IDEA I'M REALLY
EXCITED ABOUT. [INDISCERNIBLE]
WE HAVE COMMUNITY MEETINGS AND
PEOPLE ATTEND WITH CONCERNS AND
GEOGRAPHICALLY STUDY AND BEING
ABLE TO TALK ONLINE IS A NEW AND
IMPORTANT THING TO ACHIEVE. WE
WILL TRY TO DO THAT IN THE STUDY
AND TRYING TO SEE HOW IT WAS AND
I LOVED TO CATCH YOU AT THE
BREAK TO GET YOUR IDEAS ABOUT
THE BEST WAY TO DO THAT.
I ALSO WANTED RIGHT NOW
[INDISCERNIBLE].
GRAPH WE DEVELOPED AND HAD
OPPORTUNITY TO GET INPUT THROUGH
A CONVENING IS REALLY
APPRECI
APPRECIATED.
>>I WAS WONDERING WITH
RESPECTED COLLECTED ACTION AND
TRULY IS BRINGING PEOPLE
TOGETHER TO WORK TOGETHER.
>>I WAS GOING TO ADD SOMETHING.
ONE THING WE STARTED WITH THIS
PROJECT IS ONE OF THESE THINGS
THAT PEOPLE COULD DO EXPERI
EXPERIMENTS.
IT WAS IN A BARRIER AND
SURVEYING PARTICIPANTS AND
IMMEDIATELY HAD A SURVEY AND 70%
OF PEOPLE WERE REPORTING
COMPUTER USING COMPUTER AND WE
HAVE PEOPLE IN RURAL COMMUNITIES
BUT THEY ASKED FOR A PHONE AND
COULDN'T MAKE A WORKSHEET AND
[INDISCERNIBLE] IN DATA AND WENT
UP TO 80% AND IT WAS CLEAR THAT
WE HAD TO HAVE FACE TO FACING
INTERACTION AND HAVE DATA
SHARING EVENTS AND WE HAD
[INDISCERNIBLE] AND TRAINING
LOCALLY FACED ANSWERING
QUESTIONS AND LOOKING AT
COMMUNITY NUMBERS COMBINED WITH
THE HARDCOPY AND GOING TO AN
INTERACTIVE WEBSITE AND
ACKNOWLEDGING ANY MULTITIER
APPROACH.
>>THANK YOU.
>>YEAH. I HAD NO IDEA YOU
TOUCHED ON THIS A LITTLE BIT A
NUMBER OF YOU. I WONDER IN
TERMS OF REPORTING BACK NOT JUST
IN TERMS INDIVIDUALLY WHAT
PEOPLE DO BUT AT COMMUNITY AND
POLICY LEVEL.
JUST WONDERING YOUR GENERAL
SUGGESTIONS HOW RESEARCHERS AND
FUNDERS COULDN'T KEEP MOVING
THAT FORWARD AND, YOU KNOW, WHAT
YOU SEE IS SOME BARRIERS AND
SECOND THING.
>>I WILL START.
[INDISCERNIBLE] WE THINK ABOUT
THE CONCEPT OF RETURN OF VALUE
THAT IS ESTIMATING AND RETURNING
RESULTS AND COMMUNITY FORUMS
WITH LARGER POPULATIONS AND WE
HAD FIRST COMMUNITY TOWN HALL
AND [INDISCERNIBLE]. WE HAD IT
ON A COMMUNITY CAMPUS. IT WAS
VERY IMPORTANT HISTORICALLY TO
GO BACK TO THE COMMUNITY WHERE
MANY KNOW THAT THERE IS ADOPTING
AT LEVELS IT THAT JUSTIFY THAT
FOR US THAT RESULT IN
[INDISCERN
[INDISCERNIBLE].
A, WE ARE RETURNING VALUE NOW
FROM OUR STUDY. HOW DO YOU ALL
NEED [INDISCERNIBLE]. IS THE
WAY THAT WE ARE DEFINING WORKING
VALUE AND RESEARCH PROGRAM
ALIGNED WITH HOW YOU HEAR VALUE
AS A COMMUNITY OR
[INDISCERNIBLE]. I WANT TO
ENCOURAGE PEOPLE TO THINK ABOUT
HOW DO YOU WRITE DISSEMINATION
TO PARTICIPANTS AS WELL AS TO
LARGER POPULATION INTO YOUR
STUDIES AND PROJECT ON CANCER
SCREENING AND I SIMPLY WENT TO
BARBERSHOPS ON SATURDAYS AND
SOMETIMES SAT IN THEM AND WOULD
SAY ANYBODY WANT TO HEAR ABOUT
WHAT I FOUND IN THE STUDY I'M
OVER HERE IN THE CHAIR WE CAN
SIT AND HAVE AN INFORMAL
CONVERSATION ABOUT THAT.
>>[INDISCERNIBLE].
>>THEY WILL COME TO ME OR US ON
THAT SATURDAY AND IN THE
BARBERSHOP AND WHAT I FOUND AND
TRAINING THE BARBER TO ALSO
DISSEMINATE THAT.
>>THIS MORNING I HAD A
CONVERSATION WITH JEFF AND ONE
THING WE CAME UP WITH IS, YOU
KNOW, RETURN OF STUDY LEVEL
RESULTS AND COMMUNITY-LEVEL
RESULTS IS UNDERDONE. WE ARE
HAVING A CONVERSATION AT AN
INDIVIDUAL LEVEL AS WELL AND
KNOWING WHAT THE RESULTS ARE AT
THAT LEVEL AND [INDISCERNIBLE].
I THINK IT IS AN IMPORTANT THING
FOR US TO REMEMBER. THERE ARE
CERTAINLY TIMES IN WHICH THE
MOST IMPORTANT DISSEMINATION
FROM THE DATA IS NOT WHETHER YOU
ARE AN OUTLIAR OR IN
DISTRIBUTION TO THE STUDY BUT A
DISTRIBUTION IS AT A POINT WHERE
EVERYBODY IN THE COMMUNITY
EXPOSES A LEVEL THAT
[INDISCERNIBLE]. PEOPLE ARE
FOCUSING ON THE INDIVIDUAL AND
REACHING OUR PRIMARY GOAL AND I
APPRECIATE THAT WE HAVE
INTENTIONAL ABOUT INDIVIDUAL
COMMUNICATION AS WELL AS STUDY
LEVEL AND COMMUNITY LEVEL AND
THERE ARE TIMES WHERE THE
INDIVIDUAL VARIATION MIGHT BE
THERE. THE POINT IS THAT WE ARE
ALL FACING THIS. THAT IS WHAT
WE NEED TO THINK ABOUT FIRST AND
FO
FOREMOST.
>>I JUST WANT TO NOTE THAT THEY
ARE SHOWING INDIVIDUAL RESULTS
HAS TURNED OUT TO BE A WAY TO
BRING ATTENTION TO THE RESULTS
IN THE CHILD HEALTH AND
DEVELOPMENT STUDIES AND WE
RANDOMIZED HALF OF THE PEOPLE TO
RECEIVE PERSONAL RESULTS AND
[INDISCERNIBLE] IN LAB RESULTS
AND THOSE RECEIVING INDIVIDUAL
RESULTS THAT ARE TWICE AS MUCH
TIME ON THE REPORT.
HOPEFULLY THEY DIPPED INTO
STUDIWIDE RESULTS WHILE THEY
WERE THERE AND HAVE MORE OF AN
OPPORTUNITY TO LEARN MORE ABOUT
THE STUDY AND RELATIONSHIPS TO
HEALTH.
>>I WANTED TO HIGHLIGHT ONE
THING INTERESTING IN THE CASE
STUDY IN SUPERIOR WAS THAT
BEFORE I WAS CONTACTED TO LOOK
AT HOW THIS IMPACTS
[INDISCERNIBLE] WANTING TO SET
UP A MONITOR -- COMMUNITY WANTED
TO SET UP A MONITOR AROUND THAT
AND APPROPRIATE TIMING AND WE
DIDN'T HAVE TIME TO SET IT UP.
ONE THING THAT WAS INTERESTING
IS THAT WE DID A SERIES OF
HEALTH TALKS TO BUILD
RELATIONSHIPS IN THIS SPACE AND
WHAT THE COALITION DECIDED THEY
THOUGHT WOULD BE GOOD AND WE
LOOKED AT SOIL WATER AND DUST
SAMPLES AND INTERESTINGLY, WE
GENERATED A DATA SET AND I
LOOKED OUT AND NOT WATCHING
ARIZONA DEPARTMENT OF
ENVIRONMENTAL QUALITY THAT
DIDN'T HAVE [INDISCERNIBLE] FOR
SEVERAL YEARS AND PEOPLE STARTED
TO DO DATA SHARING AND STARTED
TO SEE THE STATE IS LIKE OH, WE
ARE UPDATING AND STARTING TO SEE
AND RESPOND TO -- OKAY.
STARTING TO SEE THAT THE STATE
IS NOW UPDATING AND ADDRESSING
THIS LONG-TERM MEDIATION PROGRAM
AND INDUSTRY IN THAT AREA
SUPPOSED TO BE MAINTAINING
RELEVANT LEVELS TO DO YARD
CLEANUPS AND SEEING SCIENCE
GOING ON AND COLLECTING DATA
THAT IS PROMPTING STATE AND
INDUSTRY TO GO CRAP WE WERE
SUPPOSED TO DO OUR REMEDIATION
PROGRAM AND THEY ARE STARTING
THE DIALOGUE AND WE DID THE SOIL
SHOP AND THEY GOT MORE THAT YOU
WOULD SEE THIS ACTION GOING ON
MORE AND MORE AND ACKNOWLEDGING
THAT WE SAW IN RESPONSE TO THE
COMMUNITY-BASED WORK THAT STATE
AND INDUSTRY STARTED TO RAMP UP
LONG-TERM REMEDIATION WORK. IN
ADDITION TO THE SPACE, WE SAW
THAT MINING COMPANY ACTUALLY
REACHED OUT TO LOCATE DATA,
DATA.
THAT DOESN'T HAPPEN; RIGHT?
THEY DIDN'T SHARE ANYTHING. I
THOUGHT IT WAS IMPORTANT THAT
THEY WANTED TO SEE A COMMUNITY
SCIENCE WORK TO MAKE SURE THAT
THEY DID OUTREACH AND DEALT WITH
POTENTIAL CLEANUPS AND I HAVE
DONE MULTIORGANIZATIONAL CALLS
IN TWO COMMUNITIES AND ONE WAS
WHERE WE DID PROJECT
[INDISCERNIBLE] AND OTHER
ACTIVITIES AND WHERE COMMUNITY
MEMBERS HAD HIGH-WIND EVENTS AND
EASILY WIND AND WATER AND
MASSIVE WIND EVENT AND PARTICLES
IN AIR AND COMMUNITY MEMBERS
CONTRIBUTING IN BASEBALL GAME
AND THIS IS NOT SUPPOSED TO
HAPPEN AND UNDERSTANDING THROUGH
PROMOTORA AND WHAT ARE WE GOING
TO DO ABOUT THIS? IT
CONSOLIDATES IMAGES AND WHAT ARE
WE DOING WITH THIS? AND
DISTRIBUTING IT OUT TO A GROUP
THAT HAS LOCAL AND STATE AND
FEDERAL GROUP REPRESENTATIVES TO
SAY HOW YOU ARE ADDRESSING THIS
AND ENFORCING THAT THIS IS BEING
DISCUSSED IN THIS AREA. THAT
WAS SEEING LEVELS OF STIMULATION
WHERE I THINK THAT A PAPER THAT
I HAD ON ONE OF THE SLIDES
ACKNOWLEDGING BETWEEN LITTLE
POLICY CHANGES AND LITTLE LEVELS
YOU WANT TO HAVE SQUARED UP FOR
THESE ITEMS.
>>MY NEXT QUESTION IS
[INDISCERNIBLE].
YOU SAID THAT YOU DON'T
[INDISCERNIBLE] UNDER THE
CRITERIA. YOU HAVE MULTIPLE
FORMATS AND YOU HAVE TO CHOOSE
THE BEST ONE.
>>YEAH. [INDISCERNIBLE].
>>[INDISCERNIBLE] BUT, I THINK
THAT IF YOU -- OR I MAY SUGGEST
IF YOU PULL KEYCOMPONENTS FROM
FORMATS AND CREATE A SCALE
FORMAT FOR YOUR CRITERIA.
THEN REGARDING THE SITUATION
THAT IS UPDATED AND TO UPDATE
[AUDIO CUT OUT].
[INDISCERNIBLE] AND HOW THE
CORONAVIRUS CHANGED THAT AND
THAT INCREASES PEOPLE'S
ENGAGEMENT OR PROCESSES
[INDISCERNIBLE]. SO THERE IS A
POSSIBILITY OF BUILDING THAT
OPTIONALITY INTO THINGS.
>>THINKING IN THE FUTURE, YEAH.
YES. THAT IS ONE OF OUR
ENGINEERING GOALS. WE HAVE HAD
PARTICIPANTS IN MULTIPLE
CONTEXTS ASK FOR ABILITY TO TURN
ON AND OFF AND ALSO TO SWITCH
BETWEEN LONG SCALE AND SHORT
SCALE.
>>THANK YOU.
>>CAN I ADD THAT RESEARCHER
DATA EXPLORED AND DOES ALLOW
RESEARCHERS TO BE LONG AND
LINEAR AND DATA.
>>I WANT TO CONGRATULATE THIS
WHOLE GROUP. I THOUGHT IT WAS A
REALLY WONDERFUL SESSION. I
WANTED TO ALSO JUST COMMENT TO
JULIA ABOUT THE PROGRESS AND
[INDISCERN
[INDISCERNIBLE].
>>I WANTED TO REALLY SPEAK TO
JAY'S COMMENTS AS WELL AND
SOMETHING OCCURRING TO ME AS I
WATCHED THE PANEL AND HEARING
THEIR PERSPECTIVES AND
COMMONALITY. WE OFTEN TALK
ABOUT THERE WILL BE PERSPECTIVES
THROUGH COMMUNITY. I THINK MOST
AMAZING THING ON PANEL IS TO SEE
PEOPLE FROM VARIOUS BACKGROUNDS
AND GEOGRAPHICAL REGIONS AND
PERSPECTIVES WERE IN LOCK STEP
AND THEIR ABILITY TO LEARN FROM
EACH OTHER AND SUPPORT EACH
OTHER AND SHARE COMMON CONCERNS
WAS REALLY PRICELESS AND MADE ME
THINK WHAT YOU THINK ABOUT A
CONCEPT WHERE WE BRING PEOPLE
FROM DIFFERENT COHORTS TOGETHER
TO SHARE CONCERNS IN COMMUNITIES
AND CREATING A VIRTUAL FORUM IT
THAT ACKNOWLEDGES THE
PARTICIPATION.
THAT IS ONE OTHER THING. WHEN
WE STARTED CONVERSATIONS THEY GO
FROM LDANS AND [INDISCERNIBLE]
AND [INDISCERNIBLE] AND
YESTERDAY THEY WERE ALL
[INDISCERNIBLE].
I THINK THERE IS VALUE IN THAT
TO PROMOTE THAT. I WANTED TO
SHARE SOME THOUGHTS.
>>GREAT IDEA. THANK YOU!
>>YOU MENTIONED AGING
[INDISCERNIBLE] SO MY PRACTICAL
MOTION WOULD BE [INDISCERNIBLE].
SHOULD WE THINK ABOUT HAVING
INSTITUTION -- BASED? AND
HAVING RESPONSIBILITY TO
COMMUNICATE AND NOT ONLY
INDIVIDUALS AND HOW MANY FINAL
COME UP? BECAUSE INSTITUTIONS
GET IN THERE PERSONALLY AND THEY
ARE IN PROCESS NOT ONLY KEEPING
[INDISCERN
[INDISCERNIBLE].
>>THANK YOU SO MUCH. I OFTEN
STRUGGLE WITH THIS AND I LEFT
UNIVERSITY TO COME TO A NEW
POSITION.
I KNEW I HAD SET UP BEST
PRACTICES AND THIS IS
INFORMATION AND UNLESS IN
CLINICAL TRIAL.GOV AND NOT ALL
RESEARCH AND REALIZED THERE WAS
NO COMMUNITY FOOTPRINT IF YOU
WILL OF THOSE RESULTS THAT IS A
GREAT RECOMMENDATION FOR US TO
REALLY THINK ABOUT HOW WE CAN
CREATE SPACES AND PLACES WHERE
RESULTS COULD SIT AGNOSTIC OF
THE RESEARCHER AND REALLY EVEN
SUPPORTIVE OF THE INSTITUTION
AND KNOW THERE IS CPSAS WHERE
THEY HAVE ANY RESEARCH THAT IS
SPONSORED BY THAT NETWORK GO ON
TO THE UNIVERSITY WEBSITE AND
THERE IS [INDISCERNIBLE] FROM
THAT. WE NEED TO THINK ABOUT
THAT AND LEVEL OF ACCOUNTABILITY
AND THINKING ABOUT WHERE RESULTS
SIT AND CLINICAL TRIALS.GOV NO
MATTER WHO YOU ARE YOU HAVE TO
PUT RESULTS ON THAT SITE AND
LEAVING INSTITUTION AND YOU HAVE
TO UPDATE AND CONTACT YOU AND
THINK ABOUT ELEVATING CONCEPT
AND RESEARCH AND FINDING THAT
THEY MIGHT NOT BE IN CLINICAL
TRIAL STUDY.
>>FOLLOW UP AND GENERATING DATA
AND THEN YOU THINK ABOUT THE
DATABASE AND I SURVEY PEOPLE
LIKE ARE YOU OKAY? WITH THIS
DATABASE?
WE REMOVED AND ARE DEIDENTIFYING
COMPLETELY AND ARE YOU OKAY
BEING IN THE DATABASE?
INTERESTINGLY IT IS A SMALL
NUMBER. LESS THAN 5 OR 10
PARTICIPANTS THEY WERE LIKE TAKE
ME OUT AND KNOW THAT I DON'T
WANT TO BE IN THE DATABASE AND
FASCINATING THE DISPLAY THAT IS
SOMETHING TO THINK ABOUT AND
ASKING PEOPLE HOW THEY WANT IN
DATA ARCHIVED OVER TIME AND IN
TERMS OF CREATING DATABASES AND
APIS ARE SOMETHING TO CONSIDER
AND REPORTING BACK INCREASING
AND MAKING SURE MORE LOCALLY AND
DATA AND STANDARDS AND PEOPLE
WITH GREAT THINGS AND PEOPLE ARE
LIKE WE WANT TO SEE THE MAP. WE
WANT MAP AND IF WE DO THIS AND
IT TAKES A LONG TIME.
WHAT SCALE ARE YOU COMFORTABLE
WITH? PRIVACY IS CRITICAL AND
-- PRIVACY AND SOME EXPERIENCES
-- PEOPLE ARE SEEING SHARING
THAT IS GREAT AND NOW EVALUATING
OUTCOMES OF WHAT HAPPENS AND
OPEN ON THIS MAP AND
PARTICIPANTS HAVE ACCESS AND
PASSWORD PROTECTED
[INDISCERNIBLE] AND NOW WE HAVE
A MAP THAT WILL CHANGE LEVEL OF
ACTION TAKE N.
>>THANK YOU EVERYONE ON THE
PANEL FOR GREAT DISCUSSION. SO,
WE HAVEN'T TALKED ABOUT MUCH
ABOUT RESOURCE OF PROJECTS.
WE CAN REPORT BACK. I WOULD
LIKE TO GET PANELISTS TO TALK
ABOUT THIS IDEA. IF YOU HAVE A
LIMITED AMOUNT OF RESOURCES AND
CENTRALIZED TO DIRECTIONAL.
OTHER HAND TOTALLY ENGAGED.
WHERE IS THE SWEET SPOT.
IN THAT KIND OF SPECTRUM AND
[INDISCERN
[INDISCERNIBLE].
>>CREATING PARTLY FOR HEALTH
AND RESOURCE PROBLEM.
SOME ASPECTS OF IT HAVE BEEN
TESTED AND KINDS OF COMMUNITIES
AND I DO THINK THAT SOME LEVEL
OF ENGAGEMENT IN COHORTS AND
REPORTING OTHER ASPECTS OF
RESEARCH AND COSTS JUST TO
REPORT BACK AND WILL HAVE
BENEFITS OF THE PROGRAM.
THINK SOME COHORTS ARE PROBABLY
DOING THINGS AND FEED INTO IT IS
PROBABLY NATURAL AND MAYBE
TALKING ABOUT THINGS THEY ARE
ALREADY DOING THAT MIGHT
NATURALLY FEED INTO CREATING
SOME OPPORTUNITIES WITH INPUT ON
THE
THESE.
IT IS HELPFUL TO GET LEVEL OF
BUY-IN FROM PARTICIPANTS.
>>[INDISCERNIBLE]. I'M
THINKING ABOUT [INDISCERNIBLE]
AND MORE LOCAL AND HOW DO YOU
FIND BALANCE AND WHAT CAN BE
DONE CENTRALLY AND HOW DO YOU
GIVE -- MAKING SURE PEOPLE DOING
A LOCAL COHORT AT TRAINING AND.
>>THERE IS RESOURCES AND IF YOU
THINK ABOUT FUNDING AS WELL WE
HAVE TO START HAVING REAL
CONVERSATIONS AND DEVELOPING
BUDGETS ABOUT DO WE HAVE
APPROPRIATE RESOURCES ALLOCATED
TO RETURN RESULTS AND BE DONE
FOR ASSET MAPPING AS WELL AS
NEEDS ASSESSMENT AND HOW ARE
THEY GETTING ACROSS DIFFERENT
POPULATIONS THAT MIGHT BE
INVOLVED AND CONTRIBUTING
RESOURCES TO APPROPRIATELY
ALLOCATE FOR THAT AND FOR
EXAMPLE ALL OF US MIGHT BE
DIFFERENT IN WAY TO RETURN VALUE
AND RESULTS.
AND TO BE ABLE TO HAVE A REAL
CONVERSATION WITH THAT SITE I
CALL IT CITY ENGAGEMENT AND ONE
SIZE FITS ALL MEDICINE AND NOT
ONE-SIZE FITS ALL ENGAGEMENT AND
SOMETHING YOU SAID EARLIER ABOUT
RESOURCE SHARING AND SEEING
[INDISCERNIBLE] FOR GOOD ONE AND
FUNDERS ARE TALKING MORE ABOUT
HOW WE CAN COLLABORATE AND WE
THINK ABOUT TEAMS CONFERENCE
BRANCH AND THINKING ABOUT
BRINGING PEOPLE TOGETHER IN A
PLACE THAT WE CAN SHARE
RESOURCES AND BEST PRACTICES
WILL BE ANOTHER POWERFUL WAY AND
LAST THING I WILL SAY IS THAT
RESOURCE AND ALSO MAKING IT VERY
UPSTREAM ABOUT MAKING SURE WE
GET COMMUNITY RESOURCES TO BE AT
THE TABLE IN A WAY THAT WE TALK
ABOUT WHEN OR HOW WE WILL RETURN
RESULTS.
>>YEAH. ARE YOU -- I WILL GO A
LITTLE THING. WHY DON'T YOU.
[LAUGHING].
>>[INDISCERNIBLE].
>>ALL RIGHT. SO, I MEAN
[INDISCERNIBLE].
YOU KNOW, THE CHALLENGE AND
COMMUNICATION STANDPOINT OF
MESSAGE IS ALWAYS A UNIQUE
CHALLENGE IT THAT IS GREATER
THAN A MESSAGE THAT IS DESIGNED
FOR A WIDER AUDIENCE. IT WILL
DO DIFFERENT THINGS.
SAYING AT A COMMUNITY LEVEL OR
INDIVIDUAL LEVEL AND KNOWLEDGE
THAT WE HAVE ABOUT THEM.
A COUPLE THINGS I WANT TO SAY IS
ONE IS WHEN I TALK ABOUT CONTEXT
AND STANDARDS OF ACTION
THRESHOLDS AND VARIATION AND
THAT STUDY LEVEL DATA NOT
INDIVIDUAL LEVEL DATA, WE DO IT
ONCE AND WE USE SAME KNOWLEDGE
OF FOR RESULT IN AI I WILL GIVE
THIS SET OF CONTEXT AND MEANS
SMALL INVESTMENT AND LARGE SCALE
CAPABILITY. EMPHASIZING IT THIS
IS NOT SAME AS INDIVIDUAL. WHAT
DOES THIS MEAN FOR CONVERSATION
AND IT ENABLES YOU TO DETERMINE
IN THAT SITUATION AND SECONDLY
WHAT YOU ARE SAYING IS
COMMUNICATION SCIENTISTS I
DIDN'T THINK FROM A STANDPOINT
AND SCIENCE AND COMMUNICATION
STANDPOINTS COULD BE
UNDERRESOURCED COMMUNICATION,
FULL STOP.
WE HAVEN'T ACKNOWLEDGED THAT AND
HOW MUCH AT EVERY LEVEL OF
[INDISCERNIBLE] AND POLICY THAT
WE ENDURE COSTS BECAUSE WHAT WE
KNOW IS NOT GOING TO DEVELOP.
SO, THAT MAKES IT WORSE.
THIRD THING I WILL SAY IS, YOU
KNOW, I'M NOT TRYING TO COUNT
DERBY AND SPECIFICS BUT IS A
PERFECT EXAMPLE THAT IS A
SOLUTION AND TAILORING SINCE
THEN. INVESTING IN THE SYSTEM
ITSELF THAT ALLOWS YOU TO TAILOR
BETA RESULTS FROM LANGUAGE AND
RECOMMENDATIONS AND THIS
PARTICULAR [INDISCERNIBLE], ET
CETERA. THAT IS INVESTMENT UP
FRONT AND CAPABILITY OF THAT IN
TURN THAT YOU GET ACTUALLY THE
REAL BENEFIT THAT TO ME IS
[INDISCERNIBLE].
>>I WANTED TO HIGHLIGHT THAT OF
COURSE INVESTMENT SCIENCE
COMMUNICATION; RIGHT?
THINKING ABOUT MONEY IS NOTHING
COMPARED TO RESEARCH AND HAVE TO
ALLOCATE TOWARDS COMMUNICATION
AND DATA REPORT BACK AND TAKING
A STEP FURTHER THINKING ABOUT
THE PEOPLE.
ACTUAL RESEARCHERS THEMSELVES
AND THINKING ABOUT WHO IS
READING RESEARCH PROGRAMS AND
ACKNOWLEDGING THAT IN THIS TYPE
OF WORK AND WHAT WE ARE DOG, YOU
NEED TO ACKNOWLEDGE HISTORY AND
DOING AND HELPING AND WORKING
ALONGSIDE TOWARDS HEALING AND
THINK ONE OF THE THINGS YOU KNOW
IN A PAPER WE HAVE RECITING A
CALL AND CALL FOR CULTURAL
KNOWLEDGE BROKERS AND
INDIVIDUALS COMING FROM
COMMUNITIES TO SERVE AND WHO HAS
UNDERSTANDING OF COMMUNITY AS
WELL AS SCIENTIFIC UNDERSTANDING
TO SERVE PROPERLY AS A BROKER OR
IN THIS CASE [INDISCERNIBLE].
I WANT TO ACKNOWLEDGE THIS COMES
DOWN TO TRAINING AND THINKING
ABOUT TRAINING FACULTY STUDENTS
AND ALL OF US; RIGHT?
IN THIS WORK TO BE HUMBLE;
RIGHT?
TO HAVE CULTURAL HUMILITY AND
CHECK THEMSELVES AT THE DOOR
GOING INTO THESE SPACES AND
REALIZING WHAT CONTEXT IS,
SOCIAL POLITICAL AND CULTURAL
CONTEXT AND TALKING MORE ABOUT
COMPOSITION AND BUILDING OUT
POSITIONS FROM PROMOTORAS AND
HEALTH WORKERS IN THE PROGRAM SO
YOU BUILD A NETWORK IN DIFFERENT
SCALE WITHIN SPACES OF ECHO AND
ACKNOWLEDGING DATA SCIENCE AND
DATA MANAGEMENT AND COMPUTER
SCIENCE SUPPORT TO CONSIDER AND
REPORT BACK THINGS LIKE
[INDISCERNIBLE] AND OTHER THINGS
PRESENTED TODAY THAT ARE THINGS
THAT YOU NEED TO THINK ABOUT
THAT DATA SCIENCE MANAGEMENT AND
ALSO I WOULD SAY THAT I KNOW AND
RECOGNIZE THAT ECHOES AROUND
DATA COMING OUT OF UNIVERSITY
AND IECHL ACKNOWLEDGING THAT
NUMBERS ARE GENERATING A
TREMENDOUS AMOUNT OF DATA
THROUGH CITIZEN AND COMMUNITY
SCIENCE PROGRAMMING. THAT DATA
SET WE KNOW WITHIN THIS SCIENCE
DATA HAS TO BE STANDARDIZED AND
OPERABLE AND INCREASING
STANDARDIZATION AND OPERABILITY
OF EXISTING GOVERNMENT AND
RESEARCH DATA SETS TO BE WITH
COMMUNITY-GENERATED DATA THAT IS
COMMUNITY MEMBERS TIME AND
ENERGY AND COLLECTIVE SAMPLE
WONDERING WHERE THEY ARE AT WITH
BASIC EXPOSURES AND
UNDERSTANDING AND WE SHOULD
INCORPORATE THAT DATE THAW IS IN
DATA POINT COLLECTIVE GEOLOGICAL
SYSTEM OR SOMETHING IN THIS
EXAMPLE AND HIGHLIGHTING FROM
MULTIPLE THINGS HERE AND REALLY
ACKNOWLEDGING THAT TRAINING AND
HAVING CULTURAL KNOWLEDGE
BROKERS ON THE TEAM VALUING THAT
AND INVESTING IN SCIENCE
COMMUNICATION AND DATA SCIENCE
AND MANAGEMENT THINKING ABOUT
BUILDING UP NETWORKS AND FUNDING
FROM PROMOTORA AND KNOWLEDGE
BROKER POSITIONS WE NEED
BUILDING ON EXISTING NETWORK WE
NEED AND WORKSHOPS TO PERPETUATE
AND HAVE CONVERSATIONS AROUND
DATA SETS.
>>BRIAN, TO YOUR POINT ABOUT
INVESTING IN SYSTEMS SOMETHING
THAT IS A WRITING TOOLBOX WHERE
WE WILL MAKE IT EASIER FOR
PEOPLE TO TAILOR INFOGRAPHICS IN
LATEST PROJECT WHERE WE HAVE
INFORMATION AND VISUALIZATIONS
RELATED TO OXIDATION AND WE
FOUND PEOPLE TRUSTING LOCAL
COMMUNITY BASED ORGANIZATIONS
AND TWO LAYERS THAT ARE AT
INDIVIDUAL LEVELS AND PEOPLE CAN
SAY I'M INTERESTED IN THIS
INFORMATION ABOUT
[INDISCERNIBLE].
ALSO, COMMUNITY-BASED
ORGANIZATIONS THAT THEY CAN POP
IN LOGO AND INFORMATION BLOCK
AND THEY CAN ACTUALLY SAY THERE
IS BOILER PLATE TEXT WE ARE
RECOMMENDING AND THAT LOCAL
GUIDE AFRNS IS THAFRNGING AND
SYSTEM ALLOWING PEOPLE TO GO IN
EDITING TASK FOR LOCAL
SITUATIONS.
I THINK IT IS AN IMPORTANT POINT
THAT THESE THINGS NEED TO BE
MORE AND MORE NECESSARY TO MAKE
TOOLS AVAILABLE AND COMMUNITY
BASED ORGANIZATION AND RESOURCES
TO INVEST IN COMMUNICATION
STRATEGY AND ASKING YOU MY
UNDERSTANDING OF YOUR
PRESENTATION GIVING TAILORED
RESULTS TO PARTICIPANTS.
HOW DID YOU HAVE IT?
>>SO, HAD A HARDCOPY
[INDISCERNIBLE] AND DATA
VISUALIZATIONS OF
[INDISCERNIBLE] COMPARED TO
OTHER COMMUNITY MEMBERS AND
COMPARING TO EXISTING STANDARDS
AND HEALTH ADVISORIES AND HAD
VISUALIZATIONS OF ALL
COMMUNITIES IN THE STUDY AS WELL
BUT NOT WITH DATA POINT
HIGHLIGHTED.
SO, WE ALSO MADE AN INTERACTIVE
WEBSITE CONTAINING DATA
VISUALIZATION AND HAS SPATIAL
REPRESENTATION OF THE DATA WHERE
YOU CAN SEE IT ON THE MAP AND
CLICK ON A SECTION OF THE MAP
THAT WILL TAKE YOU BACK TO
GRAPHICS IT THAT YOU CAN SEE
SAMPLES OVER TIME AND TAILORING
OCCURRED WHILE INFORMATIVE
VALUATION WITH [INDISCERNIBLE]
WE HAVE PROJECT WITH
[INDISCERNIBLE] AND FEEDBACK AND
HAD A SUBSET OF PARTICIPANTS AND
WE PRESENTED INFORMATION TO
DIFFERENT COMMUNITY ADVISORY
BOARDS THAT EXIST AROUND
CONTAMINATED SITES IN THE STATE
OF ARIZONA.
>>YOU ARE SPEAKING TO THE
DESIGN. WHAT ABOUT THE ACTUAL
AUTOMATION OF THIS PERSON
REPORTING VERSUS THIS PERSON NOT
REPORTING?
>>ARE YOU SAYING HAVING A
DATABASE THAT EVERYONE IS
IDENTIFYING AND PUTTING INTO
DATABASE AND PUTTING IN THE
WEBSITE AND THEY WILL LOG IN AND
HIGHLIGHT THEIR DATA POINT TO
COMPARE IT TO OTHERS AND
STANDARDS AND BUILDING WEBSITES
SO WE CAN -- IT IS A PRINT
FRIENDLY VERSION TO PRINT EASILY
AND [INDISCERNIBLE] CAN EASILY
PRINT THESE THINGS THAT
AUTOMATICALLY FORMATS PROPERLY
TO BE IN A PAGE AND
INTERESTINGLY DO YOU HAVE
VISUALIZATION AND TABS PROVIDES
AND INFORMATION ABOUT THE
CONTAMINANT ABOUT WHAT IT IS AND
HOW IT CAN EFFECT MY HEALTH AND
ENVIRONMENT AND WHERE I CAN GET
MORE INFORMATION AND YOU HAVE
ENCYCLOPEDIA EXPLAINING
STANDARDS USE THE AND IF
EXCEEDING A STANDARD WHAT TYPE
OF ACTION YOU CAN TAKE.
>>QUICKLY FOLLOWING UP.
I ABSOLUTELY AGREE WITH THIS
SYSTEM. I WANT TO RE-ENFORCE
THE IDEA THAT TAILORING IS
IMPORTANT AT EVERY LEVEL. THERE
IS LOGO AND THAT KIND OF THING
AND THERE IS INDIVIDUAL DATA
RECOMMENDATIONS AND TAILORING
CONTEXT I WAS TALKING ABOUT.
ONE ORGANIZATION SAYING WE WILL
EMPHASIZE THAT THIS WHOLE
DISTRIBUTION IS IN THIS AND
ANOTHER CONTENT SAME DATA
DELIVERED TO INDIVIDUAL AND THIS
COMPARISON AND MEDIAN THAT IS A
CHOICE THAT CAN AND SHOULD BE
MADE AT AN INDIVIDUAL LEVEL AND
RE-ENFORCING LARGER POINTS YOU
ARE MAKING. THAT IS RIGHT.
>>HIGHLIGHTING THAT DIDN'T HAVE
TIME TO TALK ABOUT IT TODAY BUT
ROLE OF ART IN COMMUNICATION AND
FINDING IN PAPERWORK TO GET
PUBLISHED IS EVALUATING LIKE THE
LEXICON AND HOW PEOPLE TALKED
ABOUT DATA AFTERWARDS AND WE SAW
A DIFFERENCE IN TYPES OF
ADJECTIVES BEING USE THE WHERE
EXPERIENCING [INDISCERNIBLE]
ONLY VERSUS THIS AND EXPERIENCE
AND SEEING TYPES AND WAYS THAT
THEY DESCRIBED DATA AND
EXPERIENCE TO BE SLIGHTLY
DIFFERENT BETWEEN THE 2 AND ONE
SAID THAT WE LOVE THIS AND WE
WANT [INDISCERNIBLE] AND
SOMETHING TO CARRY AROUND AND
[INDISCERNIBLE]. OTHER
INTERESTING THING WITH ART
VERSUS LOCAL AT HOME IS WE SAW
PEOPLE HAD AN EMOTIONAL RESPONSE
TO DATA IN A WAY THAT MIGHT BE
DIFFERENT THAN JUST SEEING THAT
YOU EXCEEDED A VALUE EMOTIONAL
RESPONSE OF SURPRISE OR 6-MONTH
FOLLOW UP AND THOSE WITH ART
EXPERIENCE REMEMBER DATA POINT
SPECIFICALLY AND EXPERIENCE WITH
DATA GENERALLY AND REALLY TRYING
TO SUPPORT ARTS WITH EFFORTS.
>>I WANT TO COMMENT QUESTION
TODAY IS HOW TO BALANCE WHAT A
PROGRAM CAN DO AND WHAT
INVESTIGATORS HAVE TO DO OR CAN
THEY DO. PART OF I WANT TO
REFLECT ON WHAT [INDISCERNIBLE]
YESTERDAY WHEN WE HAD A REALLY
HARD TIME COMING UP WITH AN
INDIVIDUAL REPORT THAT HAD A
RETURN OF RESULT POLICY. IT
CAME -- THERE WAS NO EXPECTATION
IN THE BEGINNING OF THE PROGRAM
IT WAS PART OF THE PROGRAM AND
NO RESOURCES AVAILABLE TO
SUPPORT IT AND IF WE CAN SET
EXPECTATIONS THAT LIKE BRIAN WAS
SAYING YOU EXPECT DLOOE GUM
BOYLES AND GET [INDISCERNIBLE]
AND THINKING ABOUT WHERE THESE
ARE GOING AND SETTING THE
EXPECTATION IN THE BEGINNING OF
THE PROGRAM AND REPORT BACK IS
REALLY IMPORTANT AND WE WILL SET
ASIDE RESOURCES AND WE WILL ALSO
EXPECT RESEARCHERS TO ENGAGE IN
THIS PROCESS AND NOT NECESSARILY
THAT EVERY RESEARCHER HAS TO BE
CONTENT LEVEL SORT OF THINGS AND
THERE ARE CENTRALIZED RESOURCES
TO RELY ON AND EXPECT PROGRAM TO
PROVIDE AND EXPECTATION ON
RESEARCHER SIDE THAT YOU WILL BE
EXPECTED TO CONTRIBUTE LOCAL
CONTEXT AND WHAT WILL WORK IN
YOUR COHORT.
MEETING IN THE MIDDLE AND DOING
THIS AND [INDISCERNIBLE] AND I
THINK THAT THE EXPECTATION TO ME
TALKS ABOUT THAT AND
PARTICIPANTS KNOWING THAT YOU
CAN EXPECT THIS STUFF BACK AND
FINDING A WAY WE ARE CLEAR ON
WHICH WAY TO GO AND WE WILL BE
MUCH MORE SUCCESSFUL.
>>WE CAN TAKE ONE MORE
QUESTION. SORRY, RACHEL.
RACHEL AND [INDISCERNIBLE].
>>YEAH.
>>I WOULD ENCOURAGE THEM TO
TALK ABOUT SCALING UP AND WHAT
WORKED AND ALSO [INDISCERNIBLE]
IF POSSIBLE. I THINK THAT IN
SOME WAY THERE WILL BE MORE
APPEARANCE OF BIOSPECIMEN
COLLECTIONS AND ALL THAT STUFF.
I THINK THAT REPORTING BACK
HAVING A CENTRALIZED TOOL THAT
IS TAILORABLE AND ACKNOWLEDGING
COHORT INVESTIGATORS AND
PARTICIPANTS WILL BE EXPERTS
ABOUT HOW [INDISCERNIBLE]
TAILORED FOR EACH SITE.
ONE PLACE TO START IS COHORTS
THAT HAVE LESS ENVIRONMENTAL
DATA AND UPHOLDING CONCEPT AND
THEN YOU KNOW REITERATING DATA
VERSION OF WHATEVER WE ARE
WORKING ON AND START TO STAND UP
TO OTHER DATA ELEMENTS AND
[INDISCERNIBLE].
>>>>WOULD YOU REFER THAT
[INDISCERN
[INDISCERNIBLE].
>>GREAT QUESTION. ANY
EXPERTISE GREAT DATA COMES FROM
EVERYWHERE AND EXPANDING WHO CAN
GENERATE KNOWLEDGE AND REALLY
EXPANDING AND IN YOUR DEFINITION
OF KNOWLEDGE AND WHAT IT LOOKS
LIKE AND EMBRACING MULTIPLE
FORMS OF EXPERTISE. FOR
PROMOTORA THAT I HIRE HIGH
SCHOOL AND ABOVE THAT LEVEL OF
EDUCATION. [INDISCERNIBLE] THAT
MIGHT EXIST. SO, WITH THAT SAID
I THINK THAT I WOULD IN THE WORK
AND IN MY EXPERIENCE OF WORKING
WITH PROMOTORAS OVER THE YEARS
THAT STARTED IN 2006 IS IT IS
ABOUT COMMITMENT TO LIFELONG
LEARNING AND BEING A GOOD
LISTENER IN SPACES AND BUILDING
CAPACITY AS NEEDED TOGETHER WITH
DIFFERENT CHAMPIONS AND
PROMOTORAS HIRED ON AND
APPRECIATE YOUR COMMENT ABOUT
CO-CREATED [INDISCERNIBLE]. IT
TAKES A LONG TIME. IT IS WORTH
IT BECAUSE YESTERDAY RACHEL
HIGHLIGHTED COLLABORATION IN
BIDIRECTIONALLY LEADS TO
TRANSFORMATION AND INNOVATIVE
RESEARCH AND COPUBLISHING PAPERS
TOGETHER LOOKING AT DATA SETS
TOGETHER TO UNDERSTAND CONTEXT
WHICH THESE ARE HAPPENING
EXPANDS AND NUANCES OF
UNDERSTANDING.
SO, YEAH. IT TAKES A WHILE.
A WHILE IN A GOOD WAY. YOU ARE
COMMITTED WHEN YOU ARE BUILDING
RELATIONSHIPS WHILE GENERATING
SOME.
>>GREAT TIP.
THANK YOU FOR BEING HERE FOR THE
SESSION. IT WAS INFORMATIVE.
>>WE WILL TAKE A 4 OR 5 MINUTE
BREAK AND COME BACK AT 11:35.
>>>>TESTING 1, 2, 3, 4. 1, 2,
TO GET STARTED AGAIN.
WE MADE IT TO THE FINAL SESSION
OF THE WORKSHOP AND WANT TO
START BY THANKING EVERYBODY WHO
HAS CONTRIBUTED AND ESPECIALLY
THE ECHO PARTICIPANTS WHO
TRAVELED TO PARTICIPATE IN THIS
AND SHARE PERSPECTIVES ON THE
TURNER RESULTS. WE APPRECIATE
IT SO MUCH.
I WILL TRY TO SUMMARIZE BRIEFLY
SOME OF THE HIGHLIGHTS OF THE
WORKSHOP. I WILL DO IT BRIEFLY.
MATT WILL JOIN ME UP HERE AT THE
FRONT FOR AN OPEN DISCUSSION.
FIRST, I WOULD LIKE TO SHOW
DISCUSSION QUESTIONS I WOULD
LIKE US TO KEEP IN MIND AS WE GO
THROUGH THIS FINAL SUMMARY THAT
ARE THINGS THAT WILL COME BACK
TO AFTER COMMENTS AND THINGS WE
WANT TO DISCUSS BEFORE WE LEAVE
TODAY. WHAT ARE KEY PRINCIPLES
FOR RETURNING INDIVIDUAL RESULTS
TO PREGNANT PEOPLE AND CHILDREN
OR ADOLESCENTS?
WHAT ARE BEST PRACTICES FOR
RETURNING THEM IN ECHO AND OTHER
LARGE SAMPLE STUDIES?
WE NEED TO KNOW WHERE TO START
FOR ONE THING AND HOW TO
EVALUATE PROCESS AND IMPACT AS
WE MAKE DECISIONS AND WHERE DOES
ENOUGH UNCERTAINTY EXIST TO DO
MORE RESEARCH BEFORE ACTING ON
THOSE POSSIBILITIES.
THIS IS HOW TO SUMMARIZE A LARGE
AMOUNT OF INFORMATION WE HAVE
HEARD. ONE OF THE KEY ISSUES IS
HOW MUCH INFORMATION TO REPORT
BACK TO PARTICIPANT AND
LANDSCAPE IS CHANGE RING AS WE
ARE SEEING AND SOME
CONSIDERATIONS IN THE PAST HAVE
BEEN DUTY TO PROTECT NONMEL EFO
SENSE AND WHAT TO DO WHEN THERE
ARE TIME DELAYS IN GETTING
RESULTS AND CLINICAL
ACTIONABILITY AND GENERAL
ORIENTATION TOWARDS BEING
PATERNALISTIC AND STUDIES ARE
BEGINNING MORE ENGAGEMENT WITH
PARTICIPANTS THAT IS A GOOD
DEVELOPMENT MOVING IN THE RIGHT
DIRECTION. WE STILL HAVE SOME
CHALLENGES WITH LIMITED
RESOURCES AND COST OF
OPPORTUNITY TO RETURN RESULTS.
SO, MANY UNDERLYING PRINCIPLES
CATALYZING INCREASED REPORT BACK
MOVING INTO THE FEATURE ARE
THESE ON THE RIGHT AND DUTY TO
LOOK AND INFORM AND BENEFICENCE
AND TRUST AND TRANSPARENCY AND
RECIPROCITY AND BENEFITS TO
PARTICIPANTS AND COMMUNITIES AND
SCIENCE AND RETENTION IN OUR
STUDIES THAT ALSO THERE IS LOW
RISK EMPIRICAL LY.
AN ENGAGING PART OF THE WORKSHOP
IS TALKING ABOUT VALUE OF
RESULTS TO PARTICIPANTS FROM
THEIR OWN PERSPECTIVE AND WHAT
WE ARE LEARNED DIRECTLY FROM
THEM IN THE SESSION THEY PARTED
IN TODAY IS THE VALUE OF.
I'M SORRY WE DO KNOW THAT
PARTICIPANTS WANT THEIR RESULTS
WHETHER THEY ARE ACTIONABLE OR
NOT.
UNDERSTANDING UNCERTAINTY IS NOT
A LIMITATION THAT WE USED TO
THINK IT WAS. WE CAN GO AHEAD
WITH UNCERTAIN RESULTS AND
PARTICIPANTS THAT ARE ABLE TO
MAKE SENSE OF THAT.
PARTICIPANTS ARE NOT VESSELS TO
BE FILLED WITH INFORMATION AND
THEY ARE PROCESSORS AND VALUE
COMPARATIVE RESULTS.
THESE ARE CROSS-CUTTING THEMES
THAT HAVE BEEN USED TO ORGANIZE
THE WORKSHOP AS YOU KNOW.
RETURNING RESULTS TO PREGNANT
PEOPLE AND CHILDREN TO CHILDREN
AND ADOLESCENTS VERSUS OTHER
ADULTS HAS BEEN A KEY QUESTION.
ONE THING WE HEARD IS PREGNANT
PARTICIPANTS ARE CONCERNED ABOUT
BOTH SELF AND BABY ADDING
IMPORTANT DIFFERENCE TO
NONPREGNANT PARTICIPANTS AND
IMPORTANT TO REPORT BACK TO
POTENTIAL CRITICAL PERIODS IF
POSSIBLE BUT IS VALUABLE TO
RETURN RESULTS LATER THAT CAN BE
USED IN PLANNING FOR NEXT
PREGNANCY AND SINCE RISKS CAN BE
CUMULATIVE T IS GOOD TO KNOW IF
IT IS A LITTLE LATER THAN A
CURRENT PREGNANCY.
THERE IS A BIG RISK FOR BLAMING
THE MOTHER IN MANY INSTANCES AND
SHOULD BE FOCUSED ON SOCIETAL
VERSUS INDIVIDUAL FACTORS THAT
IS ANOTHER QUESTION.
WITH RESPECT TO REPORTING BACK
DIRECTLY TO CHILDREN AND
ADOLESCENCE, THERE IS A QUESTION
WHAT THE BEST AGE TO START WITH
IS.
SAME AS WHEN THEY START
SELF-REPORT.
IT IS AROUND 10 TO 12 YEARS.
REPORTING BACK TO PARENTS AND
CAREGIVERS, AS OPPOSED TO THE
CHILD DIRECTLY AND WHAT ARE
BENEFITS AND RISKS THAT IS
ANOTHER OUTSTANDING QUESTION.
RETURNING RESULTS BEYOND
GENETICS, WE HEARD ABOUT SOME
GOOD PRINCIPLES THAT GENOMICS
AND GENETICS RESEARCHERS HAVE
DEVELOPED AND PAVED THE WAY
WITH.
PRINCIPLES WERE ESTABLISHED
APPLYING TO ENVIRONMENTAL
FACTORS IN THIS WORKING AND SOME
DIFFERENCES BETWEEN RETURNING
GENETICS RESULTS AND OTHER KINDS
LIKE SELF-REPORT IS GENETICS
RESULTS ARE TYPICALLY STABLE AND
STATIC AND NOT MODIFIABLE AND
ARE IMBEDDED IN CLINICAL
PRACTICE NOW AND COUNSELORS
EXIST TO GUIDE WITH
INTERPRETATION AND EXPERIMENTAL
RESULTS MAY BE TIME SENSITIVE
AND CHANGE OVER TIME AND MIGHT
BE MODIFIABLE. MANY TYPES OF
DATA ELEMENTS ARE USED TO
CHARACTERIZE NONGENETIC RESULTS
IN DIFFERENT WAYS AND ARE NOT
CLINICAL IN MOST CASES AND THERE
ARE NO OBVIOUS INTERMEDIARIES.
NEXT SLIDE. WE HEARD ABOUT
ENSURING EQUITY AND RETURN OF
RESULTS AND RESEARCHERS AND
PARTICIPANTS TO CONSIDER
TOGETHER FACTORS OF LANGUAGE AND
CULTURE AND BACKGROUND KNOWLEDGE
OF THE PARTICIPANTS AND LOCAL
INSTITUTIONS WHERE THEY LIVE AND
INTERACT.
TO WHAT EXTENT CAN RETURNING
RESULTS TO INDIVIDUALS CATALYZE
COMMUNITY ACTION AND IS IT LOW
HANGING FRUIT OR ICING ON THE
CAKE?
NEXT SLIDE. TURNING NOW TO BEST
PRACTICES, WHAT ARE BEST
PRACTITIONS FOR RETURNING IN
ECHO AND OTHER LARGE SAMPLE
STUDIES?
QUESTION HERE IS WHERE TO START
AND HOW TO EVALUATE THE PROCESS
AND IMPACT.
WHERE DOES ENOUGH UNCERTAINTY
EXIST THAT WE NEED MORE RESEARCH
FOR ACTING AND ANOTHER THING OR
ITEM I WILL TALK ABOUT IS A
TRADEOFF THAT IS BETWEEN LEVELS
OF PRECISION AND ALSO SCALING UP
AND OVERALL APPROACH AND WHERE
TO FOCUS LIMITED RESOURCES AND
WHERE AND HOW TO IMPLEMENT ECHO
INTO SIMILAR PROGRAMS.
NEXT SLIDE.
SO, THIS GRAPHIC SHOWS TRADE OFF
IN PREDICTIONS AND QUESTION IS
HOW MUCH PRECISION CAN WE
RETURN? HOW MUCH SHOULD WE
RETURN?
ON THE LEFT OF THIS CONTINUUM IS
CENTRALIZED RETURN AND ON RIGHT
IS INDIVIDUALIZED RETURN. WE
CAN SEE IN TERMS OF POSSIBLE
INTERFACES ON THE CONTINUUM WE
HAVE A WEBSITE THAT IS VERY
GENERAL ON THE LEFT AND ONE ON
ONE STAFF INTERACTION OR
ENVIRONMENTAL COUNCIL OR
COUNSELOR IT THAT IS COMPLETELY
INDIVIDUALIZED ON THE RIGHT AND
SOMETHING LIKE THE DERBY APP
MIGHT BE SOMEWHERE IN THE MIDDLE
OF THE TWO EXTREMES AND
PRINCIPLES AND FACTORS THAT
DIFFER ARE MORE REACH AND LESS
TRAINING ON THE RIGHT, ON THE
LEFT. COST LESS.
THERE IS LESS ENGAGEMENT THOUGH
AND LESS NUANCE AND LESS
PERSONALIZATION. ON THE RIGHT,
WE HAVE LESS REACH, BUT TAKES
LOTS OF TRAINING AND COST IS
HIGH. THERE IS MORE ENGAGEMENT
AND MORE NUANCE AND
PERSONALIZATION AND WHAT IS THE
SWEET SPOT BETWEEN THESE
EXTREMES AND SOMEWHERE IN THE
MIDDLE, MOST LIKELY.
OTHER QUESTIONS ABOUT SCALING UP
AND REPORTING BACK. IF WE
STARTED SMALL WHICH WILL BE THE
CASE MOST LIKELY HEARING IN
TERMS OF RECOMMENDATIONS HOW CAN
WE BUILD ON SUCCESS OF SMALL
FIRST STEPS AND WHAT IS OUR
ITERATIVE PLAN TO DO STUDY AND
ACT CYCLE?
SCALING A REPORT BACK AND WHERE
TO FOCUS WITH LIMITED RESOURCES,
SOME THINGS WE THOUGHT ABOUT AND
HEARD ABOUT AND WANT TO CONSIDER
MORE IS THE RELEVANCE.
SO, THERE IS LOW WITHIN PERSON
VARIABILITY IN INSTANCES LIKE
TRAIT VERSUS STATE KINDS OF
REPORTS AND CONTEXTS TO CONSIDER
AND WHAT ARE THE MEANINGFUL
COMPARATORS FOR RESULTS THAT WE
WOULD RETURN.
WHAT IS THE CONSISTENCY ACROSS
RESULTS ON DIFFERENT OCCASIONS
OF MEASUREMENT.
WHAT IS THE MOST EFFECTIVE
COMMUNICATION METHOD. IT IS
SOMETHING TO CONSIDER LIKE TITLE
MANAGEMENT WHERE WE SAW TITLE
NEGLECT IN SOME INSTANCES
LOOKING AT INFOGRAPHICS AND
TELLING A COHERENT STORY WITH
RESULTS THAT IS MEANINGFUL TO
PARTICIPANTS AND OTHER
CONSIDERATIONS ARE WHAT ARE
AVAILABLE MATERIALS AND WHAT ARE
PROCESSES AND IS THERE PILOT
DATA AND OTHER THINGS TO
CONSIDER?
MOVING AND CONTINUING ON WITH
PRACTICE OF RETURNING RESULTS,
HOW CAN WE IMPLEMENT ACROSS A
LARGE PROGRAM LIKE ECHO?
SHOULD WE START WITH DERBY THAT
APPEARS TO COVER MANY ELEMENTS
THAT SHOULD BE CONSIDERED IN
RETURNING RESULTS?
THERE ARE SOME LIMITATIONS THAT
ARE -- SEEMS TO FOCUS ON
CHEMICAL RESULTS.
SUBSET OF PARTICIPANTS REQUIRES
BIOSPECIMEN ASSAY AND NOT
EVERYBODY WILL HAVE THOSE DATA.
IT SEEMS MOST APPROPRIATE FOR
ADULTS IN ITS CURRENT FORM. HOW
CAN WE SCALE IT UP?
HOW WOULD WE EVALUATE IT WHEN WE
DO SCALE IT UP?
WHAT ARE AVAILABLE RESOURCES FOR
THIS IN OTHER DATA ELEMENTS AND
NIEHS FOA THAT IS COMING OUT AND
HOW CAN WE INTERACT WITH THAT?
IN TERMS OF PRACTICE RETURN
RESULTS, HOW CAN WE IMPLEMENT
ACROSS ECHO?
THERE IS OTHER DATA ELEMENTS TO
CONSIDER. DOES IT INVOLVE
CLINICAL CARE OR NOT AND IS IT
AVAILABLE ON ALL PARTICIPANTS?
POSSIBLE CANDIDATES THAT INCLUDE
BMI.
DEVELOPMENTAL MEASURES LIKE AGES
AND STAGES AND WHAT OTHERS MIGHT
BE YOUTHFUL AND APPROPRIATE.
WHAT EVIDENCE IS NEEDED BEFORE
WE START IMPLEMENTATION AND TO
EVALUATE IT ONCE WE DO.
NOW BACK TO THE DISCUSSION
QUESTIONS. I WILL INVITE MATT
UP.
>>THANK YOU, CLAY, FOR THAT
SUMMARY. I WANTED TO EXTEND MY
THA
THANKS TO EVERYONE TOO AND IS
UNUSUAL THAT EVERYBODY IN THE
ROOM STAYED AND THAT PEOPLE ON
ZOOM CAN HEAR US AS WELL.
SO, LET'S SEE. WE HAVE HALF
HOUR OR MAYBE A LITTLE BIT MORE
TO WRAP UP OUR DISCUSSION.
JUST TO LET YOU KNOW ABOUT
PRODUCT FOR THE WORKSHOP, NIH
FOLKS ARE PLANNING TO WRITE A
COLLABORATIVE PAPER TO SUMMARIZE
WHAT IS HAPPENING HERE AND WAY
FORWARD FOR THOSE THAT ARE NOT
EXTRAMURAL NIH TO WANT TO GET
TOGETHER AND WRITE A PAPER YOU
ARE WELCOME TO DO THIS AS WELL
AND HOPING IT WILL GUIDE ECHO
AND SIMILAR OTHER LARGE-SCALE
STUDIES IN HOW WE INCORPORATE
AND REPORT BACK GOING FORWARD.
IN THIS DISCUSSION, I WOULD LIKE
TO FOCUS ON QUESTIONS AND FIRST
THING TO DO IS GOING TO SLIDE
YOU HAVE ON VALUE IN THE EYES OF
THE PARTICIPANTS THEMSELVES AND
REMEMBER THAT SLIDE?
BECAUSE THIS GIVES ME AND I
THINK ALL OF US A CHANCE TO
REALLY APPRECIATE THE
CONTRIBUTIONS OF ECHO
PARTICIPANTS AT THIS PANEL.
UNFORTUNATELY A COUPLE HAD TO
LEAVE EARLY.
PAMELA AND EMILY WERE WONDERFUL
AND JADEN AND VIVIAN, THANK YOU
FOR YOUR CONTRIBUTIONS.
I WOULD LIKE TO KNOW. YES.
COMING AND MEETING WITH A BUNCH
OF SCIENTISTS IS NOT THE EASIEST
THING TO DO AND WE WANT TO
REFLECT AUTHENTICITY AND COURAGE
FOR BEING HERE AND WANT TO KNOW
IF WE HAVE SUMMARIZED YOUR
PERSPECTIVES WELL ON THIS SLIDE
OR ARE THERE THINGS HERE THAT
ARE WRONG?
ARE THERE THINGS THAT ARE
MISSING?
THAT IS THE FIRST QUESTION.
JADEN AND VIVIAN, I'M PUTTING
YOU ON THE SPOT.
OTHERS CAN CHIME IN TOO. I WANT
TO HEAR FROM PARTICIPANTS FIRST.
>>ME PERSONALLY, I WOULD SEE
THAT EVERYTHING THAT WE
MENTIONED UP HERE IN THE LAST
DAY OR SO, YESTERDAY AND TODAY.
I WOULD LIKE THE FACT THAT YOU
GUYS EMPHASIZED WE ARE NOT
VESSELS BUT PARTNERS AND LIKE
THAT YOU WOULD LIKE TO
INCORPORATE US IN SCIENTIFIC
PROCESS. IT IS VERY
INTERESTING.
I LIKE THE FACT THAT YOU ALL ARE
TRYING TO ALL COLLABORATE AND
TACKLE THIS BIG PROBLEM OF
GETTING OUT THE RESULTS.
SO, I THINK THAT THE MORE THAT
WE ALL WORK TOGETHER, EASIER IT
WILL BE TO GET OUT INFORMATION
FOR ALL OF THE PARTICIPANTS.
YEAH. I APPRECIATE YOU ALL.
THANK YOU.
>>THANK YOU.
WE HAVE HEARD THAT FROM
PARTICIPANTS AND FROM SOME
SPEAKERS THAT ENGAGING
PARTICIPANTS UP FRONT AND
THROUGHOUT CAN HELP IN MANY
DIFFERENT WAYS.
SOME OF WHICH ARE THE ACTION
THAT THE PARTICIPANTS MIGHT TAKE
AND CATALYZING COMMUNITY ACTION
AND SOMEONE IS ACTUALLY HELPING
US RESEARCHERS FIGURE OUT NOT
ONLY HOW TO COMMUNICATE
INFORMATION BUT DO BETTER
SCIENCE. THANK YOU!
CLAY, CAN WE GO BACK TO THE
SLIDE ON THE PRINCIPLES AND ONE
THAT WE HAD THE TIMELINE?
>>YEAH. THE FIRST ONE.
GO BACKWARDS AND STAY CLOSE TO
THE BEGINNING OF THE --
KEEP GOING BACK.
YUP. THAT ONE. WE STARTED THE
WORKSHOP YESTERDAY TALKING ABOUT
PRINCIPLES AND THIS IS A SLIDE
THAT SUMMARIZES A BUNCH OF
PRESENTATIONS. I WOULD LIKE TO
GET IN A DISCUSSION TO SEE IF
THIS CAPTURES ESSENCE OF
DISCUSSING PRINCIPLES AND I'M
SURE THERE ARE OTHER WAYS TO
CAPTURE AND AREAS OF OMISSION
HERE AND SOME DISCUSSION ABOUT
WHETHER SLIDES CAPTURE MOST
IMPORTANT FEATURES THAT WE
TALKED ABOUT.
MAYBE STARTING WITH FOLKS
PRESENTING YESTERDAY LIKE KYLE
AND BEN AND J'INGRID AND ADAM.
>>THIS IS EMPHASIS
[INDISCERNIBLE] AND PRINCIPLE OF
NOT WANTING TO CAUSE HARMLE
DOESN'T GO AWAY HOPEFULLY AND
SOMETHING WE CAN CONTINUE INTO
THE FUTURE AND DON'T THINK
PROBLEM IS WITH PRINCIPLE BUT
OVERESTIMATION OF RISK OF HARM.
WE WANT TO KEEP EYES OPEN AND
CONDUCT RESEARCH TO -- HARM TO
SEE IF THEY ARE HAPPENING AND
NOT LET CONTROLLER HOELT US
BACK. WE NEED TO BE BOLD SAYING
AS LONG AS WE DO THIS IN A
RESEARCH CONTEXT TO OBSERVE
OUTCOMES AND MITIGATE HARMS
LET'S DO IT AND SEE IF THOSE
THINGS HAPPEN.
>>I HOERD TWO THINGS THERE.
ONE, WE MAY HAVE IN QUOTE
PATERNALISTIC WAY AND
OVERESTIMATED HARMS IN THE PAST
AND ARE UNDERSTANDING THAT HARMS
MAY NOT BE GREAT AND BENEFITS
OUTWEIGH HARMS IN LOTS OF
SITUATIONS AND TO KEEP MEASURING
IT SO WHEN WE DO EXPERIMENTS OF
DOING REPORT BACK WE CAN
EVALUATE BENEFITS AND HARMS.
>>SO, I MEAN THAT I THINK THIS
IS THE RIGHT LIST OF PRINCIPLES
AND NOT SURE I ORGANIZE THEM BY
PAST, PRESENT AND FUTURE AND IS
TRUE THAT MIX OF PRINCIPLES YOU
FOCUS ON TERMINOLOGY CHANGES
OVER TIME AND LIKE KYLE SAID
NONMAL EFO SENSE WILL CARRY
THROUGH TENSION OF WANTING TO
RETURN RESULTS AND LIMITED
RESOURCES WILL ALWAYS BE THERE.
SO, I DON'T KNOW.
I'M NOT SURE HOW I WOULD THINK
ABOUT IT. MORE EVOLUTION OF
WHAT YOU ARE EMPHASIZING RATHER
THAN EACH OF THESE PAST AND
PRESENT AND FUTURE BUCKETS
RATHER THAN BEING UNIQUELY
DISTINCT AND IS CERTAINLY TRUE
THAT THE WAY THAT WE THINK ABOUT
THIS HAS EVOLVED OVER TIME. IT
WILL CONTINUE TO EVOLVE AND FEEL
THAT THE PRINCIPLES STAY THE
SAME OR LARGELY STAY THE SAME.
>>YEAH. YOU ARE SAYING THAT
FACTORS THAT CONTINUE THROUGHOUT
IS EMPHASIS ON HOW THEY MIGHT
CHANGE. GO AHEAD.
>>THINGS LIKE [INDISCERNIBLE]
AND OTHER PIECES NO THE THAT WE
WANT TO STOP DOG THINGS AND
RETURNING INFORMATION AND GET TO
FUTURE STATUS RETURNING THINGS
BEYOND CLINICALLY ACTIONABLE AND
THINGS MAYBE NOT REALLY
UNDERSTOOD AT THIS POINT AND
LOTS OF THAT HAS TO REALLY DO
WITH UNDERSTANDING WHAT RESEARCH
PARTICIPANTS ACTUALLY FIND AS
PERSONAL UTILITY OUT OF
INFORMATION AND HOW WE INTEGRATE
THAT INTO WHAT WE ARE RETURNING
AND TEND TO THINK LIKE BEN WAS
SAYING NOT SURE IF IT IS A PAST
OR PRESENT FUTURE AND WHERE WE
CAN TAKE WHAT WE ARE DOING NOW
AND EXPAND AND MUCH MOR HOLISTIC
FUTURE TO RETURN.
>>YESTERDAY WE WERE SAYING THAT
TOO TO SAY NOT JUST CLINICALLY
ACTIONABLE BUT ACTIONABLE IN
OTHER WAYS. CAR EVEN?
>>NOT SURE. LISTENING
VIRTUALLY YESTERDAY AND WOULD
LOVE TO SEE THIS IN MORE OF A
CONTINUUM IN A CIRCULAR FASHION
AND THIS FEEDS ON ONE ANOTHER
AND AGREE WITH CONTEXT OF PAST
AND PRESENT AND FUTURE AND
EVERYTHING BUILDING UPON ONE
ANOTHER AND BEING MORE LINEAR
AND CIRCULAR AND THING SPINNING
OFF PARTICIPATE ENGAGEMENT AND
WHAT IS AT CENTER OF THIS
PARTICIPATANT VALUE THINKING
ABOUT THESE AND IMPLICATIONS.
>>IN YOUR DISCUSSION AND
PRESENTATION EARLIER YOU TALKED
ABOUT VALUE AND HOW TO DEFINE
VALUE AND WHO DEFINES VALUE AND
IS A CENTRAL PIECE, ISN'T IT?
ALSO, FACT THAT WHEN IMPLEMENT
WE IMPLEMENT THINGS IN QUALITY
AND IMPROVEMENT CYCLE AND I
THINK THAT A NUMBER OF SPEAKERS
MENTIONED THIS CYCLE USING
DIFFERENT NODES FOR AROUND THIS
CYCLE. IT IS A LEARNING
ENVIRONMENT. YEAH.
>>DO WE HAVE A Q & A FROM ZOOM?
MIC NOT WORKING YET?
>>NOTHING? HERE WE GO.
>>YEAH, YEAH, YEAH.
>>WE HAVE A COUPLE COMMENTS
THAT RELATE TO EVOLVING HARMLES
THAT WE REQUEST TO TALK ABOUT
AND SANDRA BROWN AT UC SAN DIEGO
SAYS THAT THERE ARE LOCATION AND
STATE-SPECIFIC HARMS SUCH AS
LEGAL REQUIREMENTS REGARDING
WHAT REPORTING COULD BE
HAPPENING PREGNANCY OF YOUTH
PARTICIPANTS UNDER AGE 16 AND
SOME REQUIRED DIRECT REPORTS TO
POLICE IF IDENTIFIED IN RESEARCH
PROJECT AND DISCFOR THAT AND
POLITICAL CONTEXT THAT MIGHT BE
CHANGING OVER TIME AND HOW IT
MIGHT INFORM GOING FORWARD.
>>GREAT QUESTION. DO WE HAVE
PANELISTS IN THE ROOM THAT WOULD
LIKE TO ADDRESS QUESTIONS?
IT IS ABOUT LAWS AND REGULATIONS
FOR REPORTING AND CHANGE IN
CULTURAL CLIMATE IN WHICH
REPORTING COULD HAVE UNINTENDED
HARMS.
>>SO, ONE THING THAT WE DID IS
WE MADE A -- SO THAT UNIVERSITY
OF ARIZONA IRB DOESN'T REQUIRE
ENVIRONMENTAL MONITORING DATA
YOU TO BE INCLUDED IN
APPLICATION AND IF IN THERE, GET
IT OUT AND YOU TALK ABOUT REPORT
BACK BUT THEY DON'T CARE ABOUT
ENVIRONMENTAL MONITORING DATA
BUT RESEARCH DATA AND WE ARE
LIKE OKAY. IN THIS I RECENTLY
READ THE PAPER WHERE WE ARE
CONSOLIDATING IN WHAT POINT IF
YOU HAD RESULTS REPORTED BACKING
TO YOU COULD YOU BE PUT IN A
LEGAL POSITION OF SOME SORT OR
REPORT BACK TO SOMEBODY ELSE?
WITH THAT PUBLICATION, IT
HIGHLIGHTS HAS THERE BEEN LEGAL
PRECEDENCE IN ENVIRONMENTAL
CONTAMINANTS AND STATES AND
STATE OF ARIZONA AND SELECTING
CONTAMINANTS AND MADE A SEPARATE
CONSENT FORM THAT IS RETURNING
OF INDIVIDUAL RESULTS AND IT
LAID OUT LIKE IF YOU HAVE DATA
HE AND BECAUSE WE ARE REPORTING
BACK COMPOUNDS YOU MIGHT BE PUT
IN A POSITION YOU WILL DISCLOSE
IF YOU SELL YOUR HOME AND
DISCLOSE IF YOU RENT OR DISCLOSE
IF SOMEONE FROM A SENSITIVE
POPULATION WOULD VISIT YOUR HOME
DO YOU STILL WANT INDIVIDUAL
DATA? WE SAW AROUND ORIGINALLY
AROUND 20 OR 30% OF PEOPLE SAID
THEY DIDN'T WANT INDIVIDUAL DATA
JUST AGGREGATED DATA SETS AND
AFTER REPORTING THEY SAW 10%
HANDLED THEIR DATA IT WAS A
LEGAL AND COST SITUATION.
>>OTHER COMMENTS ON THAT
QUESTION?
I THINK IT IS COMING UP TO A
CERTAIN EXTENT WITH PEOPLE
REPORTING PREGNANCY OUTCOMES IN
OUR NEW SOCIETAL MILIEU.
CORINNE?
>>JUST COMMENTING THAT I THINK
LOTS OF THE ISSUES WILL COME UP
AND FOLKS THAT ACTUALLY ARE ON
THE GROUND MIGHT NOT KNOW WHAT
TO DO. SO, SOPS KIND OF ADAPTED
TO STATE CONTEXT AND THINGS LIKE
THAT CAN REALLY BE SUPER
IMPORTANT AND ABCD HAS DONE SOME
OF THE WORK FOR WHAT THEY ARE
RETURNING THAT IS A REALLY
CRITICAL STEP.
>>DID YOU HAVE A FOLLOW UP ON
THAT?
YOU WERE JUST CALLED OUT.
>>I TOTALLY AGREE WITH THAT. I
WANTED TO ALSO COMMENT ON WHAT
MONICA SAID. IT BROUGHT US BACK
TO WHAT WE WERE TALKING ABOUT
THAT IS ASK THE PARTICIPANTS AND
DO THEY -- GIVE THEM INFORMATION
SO THEY KNOW WHAT IMPLICATIONS
OF IT ARE AND ASK THEM.
>>KAREEM, YOU HAD A QUESTION OR
FOLLOW UP COMMENT?
>>IN ALL OF US IN THE RESEARCH
PROGRAM I APPRECIATE WHAT WE DO
BY ASKING PARTICIPANTS ABOUT
WHAT THEY WANT TO RECEIVE BACK
AND YOU HAVE OPTION SAYING DO
YOU WANT TO GET THIS INFORMATION
BACK?
ONE THING TO SAY, YES. I JOINED
THE PROGRAM AND YOU HAVE SOME
ABILITY TO TAILOR YOUR
EXPERIENCE IN TERMS WHAT YOU GET
BACK AND ONCE YOU DETERMINE WHAT
YOU GET BACK, YOU HAVE THE
OPPORTUNITY TO SAY, DO I WANT TO
FOLLOW UP WITH A GENETIC
COUNSELOR? I WOULD LOVE TO
FURTHER ENGAGE WITH YOU THINKING
ABOUT PEDIATRIC RETURN OF
RESULTS AND VALUE. THERE IS A
CONTINUUM OF BIRTH TO 17. WHAT
DOES THAT MEAN ABOUT WHEN AN
ADOLESCENT MIGHT WANT CERTAIN
INFORMATION VERSUS WHAT THEY
WILL DO WITH IT. WE ARE IN A
DIFFERENT STATE AND ONE THING TO
ENGAGE ADULT POPULATION ABOUT
RETURN TO VALUE AND INTERESTING
PIECE HAVING COMMUNITY LISTENING
SESSIONS AND OTHER THINGS HOW TO
RETURN VALUE AND RESULTS THAT IS
IN OUR POPULATION THAT IS UNDER
18.
>>IF I CAN COMMENT ON THAT,
THAT IS SOMETHING WE HAVE NOT
SPENT MUCH TIME ON IN THIS
MEETING. IN THE AGE STAND, YOU
KNOW, YOU BEGIN BY RETURNING
RESULTS ABOUT YOUTH TO FAMILIES
AND TO PARENTS AND CAREGIVERS
AND WHEN DOES IT CHANGE AND HOW
DOES IT CHANGE AS YOUTH GET
OLDER?
I WOULD LOVE TO HEAR THOUGHTS
AROUND THAT.
>>I WAS GOING TO SAY SAME THING
THAT IT IS A CROSS-CUTTING THEME
WE DIDN'T CROSS-CUT AS MUCH AS
WE MIGHT HAVE. I WAS TALKING
WITH JADEN YESTERDAY ABOUT WHEN
DID YOU WANT YOUR RESULTS?
PUTTING WORDS IN YOUR MOUTH,
THIS IS CORRECT. YOU SAID ABOUT
THE SAME TIME WHEN I COULD
ANSWER QUESTIONNAIRES, YOU KNOW,
10 OR 11 OR 12, THAT IS ABOUT
THE TIME WHEN I THOUGHT, WELL, I
CAN INTERPRET RESULTS TOO. DO
YOU WANT TO -- DID I SAY THAT
RIGHT?
WANT TO EXPLAIN THAT?
>>THAT ISSACING KRAET.
>>SO, JADEN SAYS -- SO, THERE
YOU GO.
ADRIANA?
>>IN TERMS OF THIS ISSUE OF
TRANSITION FROM PARENT TO THE
CHILD, THERE IS REALLY
INTERESTING ANALOGS IN HOW
ELECTRONIC HEALTH RECORDS AND
ACCESS TO THOSE HAVE BEEN
HANDLED THAT MIGHT BE WORTH
LOOKING AT.
>>I WONDER IF WE CAN TURN TO
QUESTIONS ON BEST PRACTICES.
CLAY, COULD YOU MOVE FORWARD TO
THAT SLIDE FIRST?
>>I WANT TO COMMENT YOU HAVE
RECIPROCITY AS ONE THING AND
WHOLE YOU SCRATCH MY BACK AND I
YOURS AND LEARNING FROM AN
INDIGENOUS SCHOLAR THAT WORD
ACTUALLY MEANS IS A LITTLE
DIFFERENT IN THIS CASE WITH THE
-- WHEN THEY WERE EXPLAINING IT
IS NOT SO MUCH I SCRATCH YOUR
BACK AND YOU SCRATCH MINE BUT
WHAT AM I PARTICIPATING IN AND
RECEIVING AND LEARNING THAT I
CAN GIVE OUT BEYOND MYSELF AND
GIVE AND CREATE BEYOND ME AND
GIVE BACK TO MY COMMUNITY?
I WOULD EXPAND LIKE LOOK INTO
LIKE USING THAT I DON'T HAVE
THIS CITATION FOR INDIGENOUS
SCHOLAR BUT RECOGNIZING THAT
WORD ITSELF GOES BEYOND AN
INDIVIDUAL THAT IS GETTING
SOMETHING AND THEY CAN HAVE
SOMETHING TO GIVE TO SOMEONE
BEYOND THEMSELVES.
THAT WOULD BE -- THAT IS AN
IMPORTANT DISTINCTION.
>>BRINGING UP VALUE PROPOSITION
AND VALUE COULD BE MORE THAN
INSTRUMENTAL VALUE OF GIVING
INFORMATION BACK AND FORTH.
YEAH. OKAY. THANK YOU.
OKAY. SO WE HAVE TALKED A BIT
ABOUT THE GENERAL PRINCIPLES. I
WOULD LIKE TO GET MORE SPECIFIC.
SO THOSE ARE IN THE BLUE BOX
DOWN THERE ARE SPECIFIC SLIDES
THAT CLAY SHOWED AND GOING TO
THE NEXT ONE. OKAY. DERBY
FOLKS AND OTHER FOLKS WITH
EXPERIENCE, WHAT DO YOU THINK
ABOUT THIS SORT OF TRADE OFF
THAT IS CENTRALIZED AND
LOCALIZED WITH THOSE AT THE END
OF THE SPECTRUM THAT IS
INDIVIDUALIZED AND WHERE IS
SWEET SPOT FOR BIG QUESTION SNZ
THIS IS QUESTION I ASKED THE
LAST PANEL BUT MAYBE WE CAN GET
OTHERS INVOLVED IN DISCUSSING
THIS AND AFTER WE CAN TALK ABOUT
IT IN GENERAL AND GET DOWN ON IT
MORE SPECIFICALLY ABOUT WHAT TO
DO ON ECHO NEXT. ADAM?
>>I HAVE A BIT OF A QUESTION
THAT I WANT TO PUT BACK TO YOU
AND MAYBE POSE TO EVERYBODY
ELSE. DOES IT HAVE TO BE ONE OR
THE OTHER AND WRITTEN OUT IS A
BIT OF A DICHOTOMY AND WAY I
THINK ABOUT THIS, THERE ARE SOME
THINGS THAT ARE WELL SUITED FOR
CENTRALIZED WEBSITE APPROACH AND
OTHERS THAT YOU NEED TO HAVE
THAT ONE ON ONE STAFF ENCOUNTERS
THAT YOU CAN DO COUNSELING AND
OBVIOUSLY APPS WOULD EMPLOY A
NICE ROLE IN BETWEEN THERE AND
WONDERING IF IT HAS TO BE ONE OR
THE OTHER AND CONTINUUM OF
SPECTRUM WHAT CAN BE DONE AND
QUESTION IS UNDER WHAT
CIRCUMSTANCE IS IT BEST TO USE
LIKE A CENTRALIZED APPROACH
VERSUS INDIVIDUALIZED APPROACH?
>>JULIE MAYBE HAS A RESPONSE.
>>I WANTED TO ADD ON TO THAT
WHEN I FIRST SAW THIS I WAS
THINKING THAT THE ENVIRONMENTAL
COUNSELOR HAS TO ABSOLUTELY HAVE
AN INTERPRETIVE REPORT PROVIDING
CONTEXT THAT THEY CAN'T WORK
WITH YOUR -- THEY HAVE TO HAVE
THIS CENTRALIZED PART DONE FOR
THEM SO THEN DO THEIR JOB AND
THEY WOULDN'T JUST LIKE ANY
PERSON, THEY CAN'T JUST USE THE
RAW RESULTS WITHOUT CONTEXTUAL
INFORMATION AND WOULD NEED LOTS
OF CONTEXTUAL INFORMATION THAT
WOULD BE PROVIDED BY CENTRALIZED
ANALYSIS.
>>WHAT I HEAR FROM ADAM IS ONE
SIZE DOESN'T FIT ALL BEING IN
THE SPECTRUM AND HEAR FROM YOU
JULIE TO DO WHAT IS ON THE RIGHT
SIDE YOU NEED WHAT IS ON THE
LEFT SIDE.
YEAH, KYLE?
>>I ALSO THINK THAT JUST FROM A
SCIENTIFIC PERSPECTIVE THAT YOU
ALL HAVE PRESENTED REALLY
AWESOME EXAMPLES DOING THIS IN A
REALLY IN-DEPTH WAY LOOKING AT
CONTEXTS WHERE YOU CAN GIVE
MEANING AND CONTEXT TO
INFORMATION AND THEN HAVE A
GREAT WAY TO GET INFORMATION
BACK ABOUT WAS IT HELPFUL AND
WHAT WOULD YOU DO WITH IT? IT
IS HARDER ON THE WEBSITE SIDE.
I CAN SEE SORT OF -- OH, ONE
OTHER COMMENT THAT I THINK THAT
THE WEBSITE IS A SIMPLE KIND OF
THING THAT HELPS TO ADDRESS THE
QUESTION DON'T I HAVE THE RIGHT
TO HAVE THIS DATE S DATA? OTHE
EMPHASIZES HOW TO BE HELPFUL.
THOSE DON'T NECESSARILY HAVE
SAME SOLUTION NECESSARILY. I
AGREE THIS IS A SITUATION THAT I
COULD SEE PROJECTS AND ZOOMING
IN ON ONE RESULT OR FAMILY OF
RESULTS WHERE YOU WANT TO REALLY
FOCUS ON THAT AND SOMETHING THAT
MAYBE COMMUNITY EXPRESSES THAT
IS A TOP PRIORITY TO US AND
MAYBE FUNDING PROJECTS DOING
THAT IN THE LOCAL SETTING AND
BUILDING THIS INFRASTRUCTURE TO
DO IT MORE CENTRALLY AND
ADDRESSING THE CONCERN IF YOU
WANT TO GET AT INFORMATION
BELONGING TO YOU WE WILL GIVE
YOU A WAY TO DO THAT.
>>IS ANOTHER IMPLICATION TO BE
THAT YOU DO PILOT STUDIES
LOCALLY TO HELP INFORM WHAT YOU
DO ON A GRANDER SCALE AND SAW
HANDS BACK THERE.
>>I SEE THIS IS FOR AGGREGATE
DATA AND COMMUNITY PARTNERS AND
WORKING WITH PARTICIPANTS, APPS
HAVE THIS ADVANTAGE THAW CAN
HAVE INFORMATION THAT IS
DIRECTLY RELATED TO INTERESTS
AND THINGS THAT PEOPLE WANT TO
HEAR AND PEOPLE WANT TO DO MORE
ABOUT AND SHORT VIDEOS THAT WE
ADDED THAT HAS COME TO
DISCUSSION AND GROUPS WITH
PARTICIPANTS DOING REPORTS BACK
AND SOMETIMES THERE IS A NEED
FOR ONE TO ONE. THERE ARE
PEOPLE THAT NEED THAT TIME OF
RELATIONSHIP IN ORDER TO
UNDERSTAND BETTER IN PUERTO
RICO, IT IS DIVERSE IN HOW THEY
UNDERSTAND AND NEED THINGS.
>>RACHEL, HAVE A HAND UP?
>>YES. THIS CONTINUUM IS
USEFUL IN SENSE THAT ON RIGHT
SIDE IF WE WANT NIMBLE N-NESS S
FOR INDIVIDUAL REPORT BACK EVEN
THOUGH THERE IS A -- WE ARE ONE
ECHO PROGRAM.
EACH COHORT STILL HAS ITS
CONTEXT AND WE TALKED ABOUT
IMPORTANCE OF CONTEXT AND THERE
HAS TO BE FLEXIBILITY AND
NIMBLENESS TO ALLOW COHORTS TO
FOR EXAMPLE PARTICULAR COHORTS
HAVING INFORMATION SESSIONS
ABOUT HOW THINGS ARE GOING
SHOULD PROBABLY BE ALOUD TO
CONTINUE BECAUSE THAT FORM OF
PARTICIPANT ENGAGEMENT IS
SOMETHING FOLKS HAVE BEEN USED
TO FOR MANY YEARS AND FOLKS WILL
BE MORE PASSIVE ABOUT
DISTRIBUTING RESULTS AND THEY
DON'T NECESSARILY INFO SESSIONS
ARE NOT NECESSARILY SOMETHING
THAT IS REQUIRED.
THERE IS LESS PLACE-BASED AND
THINK THERE WILL BE NIMBLENESS
REQUIRED MOVING ON THAT SIDE OF
THE SPECTRUM WHEN WE GO THROUGH
ENGAGEMENT.
>>IN THIS FIRST CYCLE GOING
INTO THE SECOND CYCLE, THERE
WILL BE A BALANCE OR TENSION
BETWEEN WHAT WE DO IN A MORE
STANDARDIZED ONE SIZE FITS ALL
WAY AND WHAT WE DO IN MORE
FLEXIBLE WAYS. THANKS. BRIAN.
>>I WANT TO CALL OUT THAT I
LOOK AT THE SLIDE AND FEEL IT IS
CONFLATING TWO DIFFERENT THINGS
THAT NEED TO BE SEPARATED AND
THERE IS A SPECTRUM OF HOW AS IN
CENTRALIZED PROCESSES FOR
DELIVERY OF INFORMATION VERSUS
MORE INDIVIDUALIZED PROCESSES.
THERE IS UNDERLYING INFORMATION.
I -- WE HAVE MADE PATIENT
PORTALS TO ELECTRONIC WEBSITE
SYSTEM THAT ARE WEBSITES FOR
DELIVERY OF INDIVIDUAL RESULTS
AND SITUATIONS WHICH AGGREGATE
AND COMMUNITY LEVEL RESULTS
REQUIRE INDIVIDUAL LEVEL
COMMUNICATIONS FOR THEM TO BE
UNDERSTOOD AND ACTED UPON.
BOTH DIMENSIONS IT THAT ARE
IMPORTANT, I WOULD HESITATE TO
WANT THEM TOGETHER. I SEE THEM
AS DIFFERENT QUESTIONS TO BE
WRESTLED WITH. THE QUESTION OF
WHAT IS IT? THE LEVEL OF
INFORMATION THAT NEEDS TO BE
DELIVERED VERSUS HOW BECAUSE YOU
CAN MIX AND MATCH IN A VARIETY
OF WAYS.
>>IT IS GOOD AND WITH THIS
WORKSHOP IN PARTICULAR THAT IS
ABOUT INDIVIDUAL LEVEL RESULTS
AND TAKING YOUR POINT ABOUT THE
AGGREGATE.
MONICA.
>>I WAS GOING TO HIGHLIGHT
ANOTHER WAY TO THINK ABOUT, YOU
KNOW, WHAT IS ECHO PROVIDING?
WHAT -- WHAT GAP IN KNOWLEDGE
DOES ECHO PROVIDE TO AN
INDIVIDUAL OR PARTICIPANT OR TO
A COMMUNITY?
ONE THING THAT I WAS SHOWING
TODAY IS WE MADE THESE -- YOU
KNOW, THERE IS A WAY TO -- THERE
IS A WAY OF REPORTING BACK SO
WATER AND DATA AND FOR FOOD,
THIS IS A SUPER FUN SITE WHERE
THERE WAS NOT ADDRESSING INTAKE,
FOOD INTAKE OF LOCALLY GROWN
FOODS IN EXPOSURE ASSESSMENT AND
IN THIS CASE PROJECT IS ABLE TO
MEET A GAP. I WOULD THINK THAT
YOU CAN ALSO EXPAND THIS TO SAY
WHAT TYPES OF GAPS IN SOMEONE'S
UNDERSTANDING OF HEALTH OR
PRECISION HEALTH OR WHATEVER
THERE IS SO MUCH DATA BEING
COLLECTED AND WHAT GAP COULD YOU
FILL TO BE A PUZZLE PIECE TO
INCREASING LITERATURE OR HEALTH
LITERACY AND ENVIRONMENTAL
LITERACY AND THIS IS A SUPER
CITE NOT MONITORING FOODS AND
REPORT THAT BACK ON HOW MUCH
COULD BE EATEN FITTING INTO
EXPOSURE ASSESSMENT IT THAT THEY
ARE EXPERIENCING AND WAS TRYING
TO ALSO THINK IN TERMS OF
CONTEXT AND ALSO THINKING ABOUT
LIKE WHAT GAP CAN THIS PROJECT
AND DATA FILL FOR SOMEBODY LIKE
GROWING UP IN THIS TIME?
>>WHY DON'T WE TAKE ONE MORE
QUESTION AND WE CAN MOVE SINCE
RUNNING OUT OF TIME MAYBE 10
MORE MINUTES OR MORE PRACTICAL
ASPECTS.
>>FOLLOWING UP ON WHAT BRIAN
SAID AND TYING BACK TO WHAT
PARTICIPANTS SAID YESTERDAY.
I THINK THEY WERE UNIFORMLY
CLEAR THEY WANTED TO HEAR THEIR
INDIVIDUAL RESULTS FROM STAFF
PERSON THAT THEY WORKED WITH AND
HAD A RELATIONSHIP WITH WHO THEY
WOULD TRUST. THAT PERSON NEEDS
A CENTRALIZED BACKUP AND PANEL
WAS VERY CLEAR AND UNIFORM
ACROSS CULTURES THAT THEY NEEDED
TO HAVE THAT IN CONTEXT OF
OVERALL STUDY RESULTS AND
OVERALL SENSE HOW THEIR
COMMUNITY LOOKED RELATIVE TO
NATIONAL COMMUNITY AND THEIR
LEVEL OF CONCERN I WOULD ARGUE
MEANS AGGREGATE RESULTS HAS TO
BE AVAILABLE ON TWO DIFFERENT
LEVELS IN PART IN TERMS OF
INTERPRETATION AND CONTEXT OF
RESULTS AND AGREE WITH BRIAN
ABOUT TWO THINGS MOVING ALONG
THIS ACCESS.
>>GREAT. MOVING TO THE NEXT
SLIDE, PLEASE, CLAY.
WE HEARD A COUPLE TIMES FOR
SCALING UP LET'S TAKE WHAT WE
KNOW AND BUILD ON SUCCESSES AND
DO QUALITY IMPROVEMENT CYCLES .
NEXT?
I WOULD LOVE TO HAVE COMMENTS
AND MAYBE NOT NOW AS YOU THINK
ABOUT THIS GOING HOME ON WHAT
ARE ELEMENTS TO CONSIDER ABOUT
WHEN AND HOW WE SCALE UP WHEN WE
HAVE LIMITED RESOURCES AND WITH
THOSE THINGS IN MIND, NEXT
SLIDE, IS THIS A PLACE TO START?
I THINK I KNOW WHAT JULIA WOULD
SAY.
MAYBE EVEN RACHEL OR JULIA OR
KARMEN AND MAYBE THAT IS ENOUGH
CONSENSUS.
BUT, WHAT ARE THE -- WHAT SHOULD
WE BE THINKING ABOUT IF DERBY IS
A PLACE TO START FOR SCALING UP?
HOW WOULD WE SCALE IT UP?
IS IT ENOUGH TO IMPLEMENT
SOMETHING THAT IS JUST ABOUT
CHEMICALS AND JUST ABOUT
BIOASSAYS?
>>IT CAN HANDLE ANY
ENVIRONMENTAL DATA LIKE DUST
THERE AND DRINKING WATER AND WE
HAVE DONE SOME CONTINUOUS
VARIABLES LIKE LIPIDS.
>>GREAT. THAT WAS GOING TO BE
A QUESTION IF YOU WANT TO EXPAND
DERBY TO OTHER TYPES OF DATA AND
NOT JUST TOXIC ENVIRONMENT IN
CHEMICAL AND COULD IT HANDLE
SELF-REPORT SCALES AND THINGS
LIKE THAT. WHAT WOULD NEED TO
BE DONE TO DESIGN AND SOFTWARE
TO BE ABLE TO DO THAT?
THAT IS A SPECIFIC QUESTION.
IN A MORE GENERAL QUESTION, YOU
KNOW, HOW DO WE SCALE UP?
HOW DO WE EVALUATE THE SCALE UP?
WE HEARD TALKS TODAY ABOUT MIXED
METHODS FOR EVALUATION AND WOULD
LOVE TO HEAR ABOUT COMMENTS AND
I SEE YOUR HAND.
>>ONE OTHER MESSAGE THAT IS
REFERRING TO THE PREVIOUS SLIDE
IS YOU KNOW SOMETHING LIKE THIS
WOULD BE GREAT. YOU NEED PEOPLE
STILL AT LOCAL LEVELS FOR
COMMUNICATING WITH PARTICIPANTS
WHICH JOHNNY WAS TALKING ABOUT
AND ALL PARTICIPANTS WANTED TO
HEAR FROM PEOPLE THAT THEY ARE
FAMILIAR WITH.
SO, WOULD IT BE VALUABLE FOR
ECHO TO HAVE A CENTRALIZED
RESOURCE THAT IS PROVIDING
TRAINING?
SOME SITES I THINK HAVE THIS
BUILT IN. I'M SURE NOT ALL OF
THE COHORTS DO.
I THIS I THAT IS SOMETHING THAT
YOU WILL REALLY NEED AT THE
LOCAL LEVEL IF THERE IS NOT
EXPERTISE ALREADY.
>>SO, WHAT HAS BEEN THE
EXPERIENCE WITH DERBY IN TERMS
OF, YOU KNOW, TRANSLATION OF
WHAT IS ON THE APP OR IN THE
WEBSITE TO THE INDIVIDUAL?
IS THERE A STAFF PERSON WHO
INTERPRETS FOR THE INDIVIDUAL?
HOW DOES THAT WORKING?
IS IT JUST AN INTERACTION
BETWEEN THE PARTICIPANT AND
TECHNOLOGY?
>>IN SOME STUDIES, THERE ARE
COMMUNITY MEETINGS.
I LOVE THAT STRATEGY. I THINK
THAT HAS BEEN VERY EFFECTIVE.
OF COURSE, IT DOESN'T WORK IF
YOU HAVE WIDELY GEOGRAPHICALLY
SPACED. WE HAVE A QUESTION
ABOUT DOING IT ONLINE I THINK
FROM JADEN WHO THAT IS SOMETHING
THAT WE WANT TO DO IN THE
FUTURE. WE ALSO ALWAYS PROVIDE
CONTACT INFORMATION FOR THE
STUDY TEAM. ALWAYS A FEW PEOPLE
DO CONTACT THE TEAM.
OUR BELIEF IS THAT A SENIOR
RESEARCHER SHOULD TALK TO THEM.
THEY HAVE KNOWLEDGE TO DO THAT.
SO, RACHEL HAS DONE IT FOR SOME
STUDIES AND COLLEAGUE RUTH ANNE
ROOUDEL A TOXICOLOGIST HAS DONE
IT FOR SOME OF OUR STUDIES.
>>SOUNDS LIKE THAT IS NOT QUITE
THE SAME AS WHAT JOHNNY AND OUR
PARTICIPANTS WERE TALKING ABOUT,
CARRYING IT DIRECTLY FROM A
TRUSTED PERSON BUT SOMEWHERE IN
THE MIDDLE IS ACCESS TO THIS.
>>YEAH. THE COMMUNITY
MEETINGS.
RACHEL DESCRIBED IN HER
EXPERIENCE WHERE RESULTS WERE
RETURNED AT A REGULAR STUDY
MEETING THAT HAPPENS AND THERE
IS FOOD AND CHILD CARE AND THERE
IS PRIVATE OPPORTUNITIES TO TALK
TO SEVERAL INVESTIGATORS TO
BRING YOUR RESULTS PACKET AND
HAVE A CONVERSATION WITH A
RESEARCHER AT THAT SESSION.
>>KARMEN AND JULIE AND THEN.
>>WE ALSO DO THIS IN GROUP
MEETINGS. WE HAVE A PHONE THAT
A PARTICIPANT CAN CALL. THAT IS
GOING TO THE CALL CENTER. WE
HAVE A CALL CENTER THAT SOMEONE
IS IN CHARGE OF COMMUNICATING
WITH PARTICIPANTS THAT IS A
VOICE THAT THEY HEAR. THEY
ALREADY KNOW.
SO, THEY BRING THEIR QUESTIONS
AND THEN THIS PERSON IDENTIFIES
SOMEONE IN OUR TEAM THAT WILL
CALL THIS PARTICIPANT BACK AND
GIVE HER THE INFORMATION THAT
SHE IS ASKING FOR.
>>JULIE?
>>KARMEN, SUPER INTERESTING
MODEL THAT I HADN'T THOUGHT OF
IT THAT WAY.
OUR EXPERIENCE IS THAT
PARTICIPANTS HAVE ONE RESEARCH
STAFF PERSON THEY HAVE BEEN
INTERACTING WITH. IT IS
INTERESTING TO THINK ABOUT
CENTRALIZED RESOURCE WITHIN A
COHORT AND THINK THAT I WANT TO
ECHO WHAT GAIA WAS SAYING IT IS
TRAINING AND SCALING UP PEOPLE
THAT WILL FEEL COMFORTABLE
COMMUNICATING ENVIRONMENTAL DATA
ARE NOT SAME PEOPLE THAT WILL BE
SUPER COMFORTABLE NAVIGATING
NEURODEVELOPMENTAL DATA AND
HAVING TRAININGS FOR PIS AND
INVESTIGATORS AND STAFF SO YOU
CAN GET MORE COMFORTABLE AS YOU
EXPAND TO OTHER SPACES WHERE YOU
DON'T MAYBE VT SAME LEVEL OF
EXPERTISE OR COMFORT.
>>I THINK THAT INITIAL CONTACT
AND WE SAW THIS FROM A STAFF
PERSON THAT AT THAT TIME THAT
CONNECTION ON WHATEVER
INFORMATION YOU WOULD WANT TO
HEAR COULD BE MADE AND BRINGING
PEOPLE IN FROM THE STAFF OR
OTHER CLINICIANS DEPENDING ON
WHAT IS APPROPRIATE. ECHO DOES
HAVE A REALLY BROAD RANGE OF
DATA TOO. JUST THINKING IN ANY
OF OUR TEAMS THERE IS PROBABLY
NOT ONE PERSON BEST TO PROVIDE
ALL THAT DETAIL.
>>YEAH.
>>THAT STAFF PERSON THEN ALSO
COULD BE PART OF THAT
CONVERSATION. IF IT IS
SOMETHING FOR LOTS OF PEOPLE,
IDEA OF A COMMUNITY SESSION, I
THINK IT IS A MODEL THAT COULD
BE MIXED IN MANY WAYS AND HAVING
INTEGRAL PERSON BE A STAFF
PERSON NEGOTIATING PLANNING AND
CLEANING THAT UP.
CONVEYING I IT THINK THAT IT IS
REALLY CRITICAL.
>>WHAT I'M HEARING IS ANOTHER
TENSION THAT IS KIND OF THAT
PARTICIPANTS REALLY WANT TO HEAR
ABOUT ALL THEIR DATA. YET, ON
THE OTHER HAND, WE NEED TO HAVE
CAPACITY IN THE TRAINING AND IN
THE WHEREWITHALL TO BE
INFORMATIVE AND ENGAGING ABOUT
THESE -- ABOUT THIS INFORMATION.
THE DATA AND INFORMATION TO
KNOWLEDGE.
SO, THERE IS -- I THINK THIS
GOES BACK TO, YOU KNOW, STARTING
IN A PLACE WHERE WE ALL AGREE
THAT WE CAN HAVE VALUE AND MOVE
UP FROM THERE.
VERSUS THIS ULTIMATE GOAL OF
RETURNING AS MUCH AS POSSIBLE.
>>DO YOU THINK THIS IS JUST
TRYING TO THINK OF A WAY THAT
LOCK LONG TERM GOAL. WOULD IT
BE POSSIBLE TO LINK THE DAC DATA
SET TO SOMETHING THAT IS THE
TOOL THAT JULIA HAS OR WHATEVER
WILL BE ABLE TO HANDLE THAT
SIZE?
WE CAN LINK IT TO N HAYNES NOW
PULLING NATIONAL DATA IF YOU
COULD CODE OR GIVE THE
PARTICIPANT A CODE OR Q.R. CODE
OR SOMETHING AND LET THEM PULL
ANY DATA OUT OF THE DATA SET
THAT THEY WOULD LIKE. MAYBE
THAT IS THE LONG-TERM GOAL.
>>POSSIBLY. I WOULD LIKE TO
HEAR FROM NONDERBY PEOPLE AND
EXTENT TO WHICH THEY THINK DERBY
IS A GOOD PLACE TO START FOR A
LARGE SCALE STUDY LIKE ECHO.
>>YOU ASKED THE QUESTION BUT
COULD DERBY BE FOR RESULTS FOR
ANY OF THE 5 OUTCOME AREAS?
>>SOMETHING WE ARE EXCITEDED TO
EXPLORE IS IT IS WELL DESIGNED
TO RETURN ANY DATA THAT IS
CONTINUOUS VARIABLES AND I DON'T
KNOW ENOUGH ABOUT THE NORA
DEVELOPMENTAL OUTCOMES TO ANSWER
YOUR QUESTION. I WOULD LOVE TO
CONSULT WITH SOMEBODY AND THINK
ABOUT THAT.
THAT IS SOMETHING THAT I KNOW
THAT RESEARCH TEAMS THAT WE
PARTNER WITH ARE VERY MUCH
INTERESTED IN BEING ABLE TO
RETURN NEURODEVELOPMENTAL DATA.
>>PUTTING UP BMI AND POTENTIAL
MEASURES AND THERE IS VALIDATION
AND MATERIAL AND RESOURCES ON
HOW TO RETURN DATA TO
INDIVIDUALS.
SO, TAKING EXAMPLES WHERE THERE
IS OUTSIDE AND PILOT WORK WITH
ECHO AND LARGE-SCALE STUDIES AND
SCALING THEM UP MIGHT BE THE
NEXT PLACE TO GO.
>>SORRY THERE WAS LOTS OF
ENTHUSIASM FOR PARTICULAR
MEASURES IN REPORT BACK
WORKGROUP THAT ULTIMATELY ENDED
UP IN DO NOT REPORT THING.
WITHIN THE TASKFORCE, PEOPLE
THOUGHT THOSE WERE VERY GOOD
PLACES TO START.
>>THAT IS INTERESTING.
I DIDN'T KNOW THAT.
>>IF YOU LOOK AT THE --
>>YOU CAN LOOK AT EARLIER
DRAFTS OF THE TABLE TO SEE HOW
IT CHANGE THE.
>>IT IS REALLY VALUABLE TO HAVE
YOU HERE AND TO RECOLLECT WHAT
HAPPENS IN THE DELIBERATIONS.
YEAH, ADAM?
>>JUST TO ANSWER THE QUESTION
WHETHER DERBY IS A GOOD PLACE TO
START. SOUNDS LIKE A PERFECTLY
REASONABLE PLACE TO START AND
MOST IMPORTANT OF THAT IS HOW TO
EVALUATE AND YOU WANT TO MAKE
SURE IT IS MEETING NEEDS OF THE
COMMUNITY YOU ARE TRYING TO
SERVE AND PIECE THAT YOU REALLY
WANT TO GET FLUSHED OUT IS WHAT
ARE THINGS THAT YOU ARE LOOKING
FOR TO MAKE SURE THAT IT IS
ACTUALLY A GOOD PLACE TO BE
RETURNING AND IT IS CERTAINLY
SOUNDING LIKE A GREAT INITIATIVE
AND PLACE TO PILOT. I THINK YOU
WANT TO MAKE SURE THAT
PARTICIPANTS ARE GETTING WHAT
THEY NEED OUT OF IT AND
RESEARCHERS GETTING WHAT THEY
NEED OUT OF IT AND ANYBODY
INVOLVED IN THE RETURN PROCESS
UNDERSTANDING WHAT RESOURCES IT
IS TAKING FROM THEM TO INITIATE
THINGS AND CONTINUE THROUGH.
THERE IS A HOLISTIC PICTURE
UNDERSTANDING WHETHER IT IS
ACTUALLY ACHIEVING THE GOAL YOU
HAVE FOR IT. I WILL JUST SAY
THAT I THINK THAT THE MOST
IMPORTANT ONE IS HOW TO
EVALUATE.
>>GREAT.
>>I WOULD ARGUE SECOND MOST
IMPORTANT ONE THAT MIGHT NOT BE
TLUP IS HOW THAT REPORT OR HOW
YOU GET DATA OR REPORT BACK
SERVING AS BOUNDARY OBJECT TO
SHARE WITH OTHERS OR LEAD TO
SOME DIFFERENT COMMUNITY LEVEL
CHANGES OR COMMUNITY LEVEL
BEYOND CHANGES.
>>YEAH.
>>THINKING STRATEGICALLY ABOUT
REPORTING BACK BUILDING CAPACITY
TO CREATE TYPES OF CHANGES WE
WOULD NEED TO SEE.
>>THAT IS THE IMPACT QUESTION;
RIGHT?
WHAT COULD BE PART OF THE
EVALUATION AND GET TO THINGS
THAT BRIAN WAS TALKING ABOUT AND
YOU REALLY NEED TO KNOW WHAT
YOUR QUESTION IS TO MATCH THE
METHOD TO THE QUESTION.
>>RELATED TO THAT, WE HAVE BEEN
FEELING LIKE THERE IS A NEED TO
CREATE RESOURCES OUTSIDE OF
DERBY THAT PARTICIPANTS CAN TAKE
TO OTHER PEOPLE. WE ACTUALLY
CREATED A SMARTPHONE APP CALLED
DETOX ME. IT HAS ALL EXPOSURE
REDUCTION TIPS YOU WOULD GET IN
A REPORT THAT DOESN'T HAVE
PERSONAL DATA AVAILABLE TO
ANYBODY.
YOU CAN DOWNLOAD IN ENGLISH OR
SPANISH.
>>I'M NOTICING WE ARE 14
MINUTES OVER THE STATED END TIME
AND I WANT TO MAKE SURE THAT
PEOPLE CAN GET TO WHERE THEY ARE
GOING TO NEXT. THIS HAS BEEN A
REALLY GREAT LAST DISCUSSION.
THANK YOU!
IT REALLY I THINK HELPS US AS A
PLANNING GROUP TO FIGURE OUT
WHERE TO GO NEXT.
AGAIN, I THINK I SPEAK FOR
EVERYONE APPRECIATING MULTIPLE
VIEWS AND THOUGHTFULNESS THAT
WENT INTO THE WORKSHOPS.
COMMENTS BEFORE WE ADJOURN?
CLAY, ANY COMMENTS?
>>NO. JUST THANK YOU AGAIN.
GREAT WORKSHOP AND THANK YOU TO
YOUR PARTICIPATION. WE REALLY
APPRECIATE IT.
>>I WANT TO THANK YOU ALSO CLAY
AND EVERYONE ELSE INVOLVED IN
THE PLANNING. IT WAS A REALLY
INTERESTING GROUP OF PEOPLE YOU
BROUGHT TOGETHER IN REALLY
DIVERSE PERSPECTIVES. IT WAS
FUN!
>>THANK YOU, EVERYBODY. PLEASE
KEEP IN TOUCH IF YOU HAVE
ADDITIONAL COMMENTS. WE WILL
SENT OUT A SORT OF BRIEF
EVALUATIVE QUESTIONNAIRE. HOPE
THAT EVERYONE GETS TO THE NEXT
PLACE SAFELY AND EXPEDITIOUSLY.