>>WE ARE HOSTING THIS
WORKSHOP TODAY. I WANT TO
REALLY THANK DR. CINNAMON BLOSS
FOR HOSTING US IN THE SAN DIEGO
MEETING. WE ARE PLEASED TO BE
HERE TODAY AND INVITED A NUMBER
OF THOUGHTFUL PANELISTS TO
DISCUSS ISSUES THAT NIH MIGHT
EXPECT TO FACE IN THE NEXT 5 TO
10 YEARS TO RESPECT HOW PEOPLE'S
DATA COULD BE USED IN BIOMEDICAL
RESEARCH. THIS MEETING TODAY IS
A FORM OF PUBLIC ENGAGEMENT. WE
ARE TALKING TO ALL OF YOU TODAY,
PANELISTS AND BIO ETHICISTS AND
DATA SCIENTISTS AND TECH
DEVELOPERS, ET CETERA, TO HEAR
POINTS OF VIEW ON IMPORTANT
ISSUES AND ADDITIONALLY IF YOU
WILL SEE, WE HAVE AN OPPORTUNITY
FOR ANYONE LISTENING IN VIA THE
WEBCAST TO SUBMIT QUESTIONS OR
COMMENTS AT ANY TIME TO INBOX
SCIENCE POLICY AT NOD.NIH.GOV.
WE WILL MAKE SURE THEY ARE
INCORPORATED INTO THE DISCUSSION
AND IN ADDITION TO CONVERSATION
TODAY WE WILL HAVE ROBUST
CONVERSATIONS ACROSS COMMUNITIES
IN THE US TO HEAR THEIR VIEWS
ABOUT PERSONAL HEALTH DATA AND
RESEARCH. WE WANT TO REALLY
TALK ABOUT WHAT WE HAERRED FROM
GREAT AND RICH CONVERSATIONS IN
THE CONTEXT OF REALLY, REALLY
IMPORTANT ISSUES AND WANT TO
THANK ALL PEOPLE HERE TODAY FOR
TAKING YOUR TIME TO THINK ABOUT
THESE ISSUES AND TO REALLY THANK
ALL THESE PEOPLE ACROSS THE US
WHO HAVE BEEN PART OF REALLY,
REALLY IMPORTANT CONVERSATIONS
OVER THE LAST SEVERAL MONTHS.
BEFORE I TURN THINGS OVER TO
SOME OTHERS WHO HAVE BEEN
INTEGRAL INTO THIS EFFORT, I
WANT TO SAY A FEW WORDS ABOUT
NIH AND OUR INTEREST IN THE USE
OF DATA AND BIOMEDICAL RESEARCH
AND HOW WE USE PUBLIC ENGAGEMENT
TO INFORM OUR EFFORTS.
CAN WE ADVANCE TO THE NEXT
SLIDE, PLEASE?
THANK YOU.
SO, REALLY, NIH'S MISSION IS TO
SEEK FUNDAMENTAL KNOWLEDGE ABOUT
THE NATURE AND BEHAVIOR OF
LIVING SYSTEMS AND APPLICATION
OF NONL TO ENHANCE HEALTH,
LENGTH AND LIFE AND ENHANCE AND
REDUCE DISABILITY AND
RESPONSIBLE DATA USE AND
MANAGEMENT IS A KEY COMPONENT OF
THIS MISSION. DATA HELPS INFORM
THE NONL AND HOW WE APPLY THAT
KNOWLEDGE AND SEE AS TRULY
FUNDAMENTAL TO NIH'S MISSION
RESPONSIBLE USE OF DATA AND DATA
MANAGEMENT OF DATA TO SUPPORT
SCIENCE.
THAT IS WHY WE ARE TALK BEING IT
HERE TODAY.
OUR JOB IS TO ENSURE POLICY
EVOLVES AS SCIENCE TECHNOLOGY
EMERGES AND EVOLVES AND THAT IS
SCANNING AND THINKING ABOUT WHAT
IS TO COME AND IT IS TOUGH TO
MAKE PREDICTIONS, ESPECIALLY
ABOUT THE FUTURE.
THAT IS WHY IT IS IMPORTANT FOR
US TO TALK WITH PEOPLE LIKE
THOSE WHO ARE CONVENED IN THE
ROOM TODAY TO HEAR YOUR POINTS
OF VIEW AND THOUGHTS AND TO
TALK, AGAIN, TO GET PUBLIC INPUT
AND PUBLIC COMMENT AND FEEDBACK
FROM COMMUNITIES WHOSE DATA MAY
BE USED.
WE HAVE ESSENTIALLY AN ENORMOUS
NUMBER OF THINGS WE DEAL WITH
AND THINK ABOUT IN TERMS
THINKING ABOUT HOW TO ENSURE
RESEARCH PROCEEDS RESPONSIBLY
INCLUDING ALL THESE IN THE
CRYSTAL BALL TODAY AND THESE ARE
INTEGRATED TO EACH OTHER. YOU
CAN'T REALLY PICK OUT JUST ONE.
IF YOU ADVANCE TO THE NEXT
SLIDE, PLEASE.
THE FOCUS HERE TODAY IS ON
THINKING ABOUT NEW TYPES OF DATA
ANALYSIS AND LINKAGE.
NEXT SLIDE, PLEASE.
IT IS NOT JUST ANY DATA. WE ARE
HERE REALLY TO TALK ABOUT
PERSONAL HEALTH DATA WHICH IS
WHY, AGAIN, INTEGRATION OF
PUBLIC ENGAGEMENT AND SPECIFIC
RESEARCH AND TOPICS WE ARE
TALKING ABOUT ARE SO CRITICAL.
IT MATTERS HOW PEOPLE FEEL ABOUT
USING THEIR DATA AND HOW IT IS
USED IN BIOMEDICAL RESEARCH AND
IS REALLY KEY TO HOW WE THOUGHT
ABOUT THIS REALLY IMPORTANT
ISSUE.
NEXT SLIDE, PLEASE.
AND FOR ALL THE DATA, I MEAN,
CERTAINLY NOT ALL OF THE DATA
THAT RESULTS FROM NIH RESEARCH
IS PERSONAL HEALTH DATA FROM ALL
DATA COMING FROM NIH-SUPPORTED
RESEARCH. WE THINK ABOUT THE
LIFE OF THE DATA AND HOW IT IS
MANAGED FROM DATA LIFE CYCLE
FROM COLLECTION TO ANALYSIS AND
SHARING IN PUBLICATION AND
STORAGE AND ACCESS AND REUSE AND
IS A REALLY ITERATIVE PROCESS
AND FROM BOTTOM THERE IS TONS
AND TONS OF TOPICS, SOME FAIRLY
PRACTICAL AND IMPLEMENTATION AND
CURATION AND STORAGE COST AND
REALLY BROAD THEMES WE EXPLORE
TODAY LIKE PRIVACY AND CONSENT.
ADVANCING TO THE NEXT SLIDE,
PLE
PLEASE.
THIS SEEMS LIKE TECHNICAL JARGON
AND IMPORTANT TO PUT IN CONTEXT
TALKING ABOUT PERSONAL HEALTH
DATA IT HAS TO DEAL WITH
PARTICIPANTS AND THOSE WILLING
TO BE PART OF THE RESEARCH TO
HELP INFORM IMPORTANT WORK WE DO
TO UNDERSTAND HEALTH. WHAT HAS
TO REALLY BE PART OF THE
ECOSYSTEM THROUGHOUT AS WELL IS
THINKING ABOUT THE PARTICIPANT
ROLE IN RESEARCH AND HOW THEY
FEEL ABOUT -- ABOUT WHAT WE ARE
DOG. THAT REALLY IMPLORES US TO
CONTINUE TO THINK ABOUT WHAT
PROGRAMS, POLICIES, AND
PROCESSES ARE NEEDED TO INCREASE
RETURNS ON PUBLIC INVESTMENT AND
DATA USED IN BIOMEDICAL RESEARCH
AND HUGELY IMPORTANT ENSURE DATA
ARE MANAGED ETHICALLY AND
RESPONSIBLY AND PROMOTING AND
SUSTAINING THESE PRACTICES.
NEXT SLIDE, PLEASE.
AS I SAID, WE THINK THESE ARE
REALLY TOPICS VERY MUCH AT
INTERSECTION OF THINKING ABOUT
PUBLIC INPUT AND PUBLIC COMMENT
AND WAYS IN THE US GOVERNMENT WE
CAN THINK ABOUT GETTING COMMENT,
FEEDBACK INTERACTION WITH
MEMBERS OF THE PUBLIC AND AS WE
KNOW, THERE ARE PROS AND CONS TO
ALL SORTS OF MODES OF
INTERACTION AND THINGS WE THINK
HAVE PLACE AND VALUE AND
THINKING ABOUT OTHER WAYS TO DO
THINGS.
FOR EXAMPLE, SOMETIMES WE PUT
THINGS OUT THINKING ABOUT A NEW
POLICY OR TRYING TO GET
INFORMATION ON PUBLIC VIEWS ON
SOMETHING WE MIGHT PUT OUT AN
ANNOUNCEMENT IN THE FEDERAL
REGISTER OR REQUEST FOR
INFORMATION AND THOSE THINGS ARE
INCREDIBLY VALUABLE. THEY ARE
SORT OF ANYONE CAN WRITE IN AND
PROVIDE VIEWS AND CONTEXT IN
EXACTLY HOW THEY WANT TO SAY IT.
THAT CAN BE INTEGRATED THINKING
ABOUT IS CHOICES THAT FEDERAL
GOVERNMENT MAKES AND DOESN'T
PROVIDE OPPORTUNITY FOR DIALOGUE
THAT IS A VERY MUCH ONE WAY
COMMUNICATION BACK AND FORTH AND
NOT EVERYBODY READS FEDERAL
REGISTER EVER DAY AND LOTS OF
REASONS THIS CAN BE VALUABLE AND
IS IN NO WAY ENOUGH.
WE TRY TO ENGAGE WITH PEOPLE ON
SOCIAL MEDIA AND IN WAYS TO
CONNECT AND MAKE CONNECTIONS
WITH PEOPLE IN DIFFERENT VENUES.
AGAIN, IT DOESN'T REALLY ALLOW
FOR REAL DIALOGUE.
A BENEFIT, FOR EXAMPLE, THE
WORKSHOP HERE TODAY IS I THINK
YOU WILL HEAR THAT WE WILL HAVE
LOTS OF DIALOGUE AND ITERATIVE
CONVERSATION AND FEEDBACK AND
THERE ARE LIMITATIONS TO THIS
AND WHO IS IN THE ROOM AND WHO
IS PART OF THIS CONVERSATION.
SO, ALL THESE THINGS HAVE PLACE
AND VALUE AND ARE IMPORTANT TO
HOW WE THINK ABOUT GETTING
PUBLIC FEEDBACK AND INPUT AND WE
KNOW WE HAVE TO DO MORE. IF YOU
CAN ADVANCE TO THE NEXT SLIDE,
PLEASE.
SO, THAT IS PART OF WHAT WE ARE
TALKING ABOUT HERE TODAY AND
THINKING OF WAYS TO EXTEND HOW
WE DO PUBLIC ENGAGEMENT AND WAY
TO THINK ABOUT CONVERSATIONS IN
AND WITH COMMUNITIES AND LOTS OF
WHAT YOU WILL HEAR ABOUT TODAY.
BUT, THERE IS LOTS OF QUESTIONS
THERE TOO. YOU KNOW, WHICH
COMMUNITIES AND WHEN AND FOR
WHICH TOPICS AND WHO IS INVOLVED
IN THOSE DISCUSSIONS MEANING
THERE IS SO MUCH TO THINK ABOUT
IN TERMS OF HAVING DIALOGUES AS
WELL AND IS PART OF WHAT WE ARE
STRUGGLING WITH AND HOW WE
TRANSLATE COMMUNITY FEEDBACK
INTO RESPONSIBLE RESEARCH AND
DEVELOPMENT THAT WE SAID WAS
PART OF THE GOAL OF ALL OF THIS.
HOW DO WE DEVELOP BEST PRACTICES
FOR SUSTAINED RELATIONSHIPS WITH
COMMUNITIES SO IT IS NOT A
ONE-TIME INTERACTION ASKING FOR
INFORMATION AND GOT GIVING
SOMETHING BACK AND HOW IT
BECOMES A TRUE RELATIONSHIP AND
HOW THIS ALL FEEDS INTO
CULTIVATING PUBLIC TRUST AND IN
BIOMEDICAL RESEARCH. NEXT
SLIDE, PLEASE.
A REASON WE THOUGHT THIS TOPIC
WE ARE THINKING ABOUT HERE TODAY
IS RIGHT FOR PUBLIC ENGAGEMENT
IS BECAUSE THERE HAS TRULY BEEN
THE TERM IS OVERUSED BY
REVELATION IN DATA SCIENCE IN
THE PAST SEVERAL YEARS AND MANY
YEARS AND, YOU KNOW, FOR
EXAMPLE, MANY OF US CARRY
COMPUTERS IN POCKETS EVERY DAY
ATTRACTING DATA ABOUT -- SOME
TRACK DATA ABOUT US AS PEOPLE
AND SOME HAVE OTHER FORMS OF
DATA WHERE WE INTERFACE WITH
THOSE COMPUTERS IN OUR POCKETS
AND HOW AND WHEN TECHNOLOGY
SHOULD BE USED IN BIOMEDICAL
RESEARCH AND WHEN IT IS
APPROPRIATE TO USE ARTIFICIAL
INTELLIGENCE AND WHAT ARE
IMPLICATIONS ABOUT THIS? SO
UBIQUITOUS AND SPECIFIC TOPIC
AND MANY OTHERS AND THIS IS A
TOPIC WE FELT WAS SO PRIMED FOR
THIS TYPE OF DIALOGUE AND
ENGAGEMENT. NEXT SLIDE, PLEASE.
AS A RESULT, THE NIH ASKED OUR
ADVISORY COMMITTEE IT IS REALLY
EMERGING TECHNOLOGY ADVISORY
COMMITTEE CALLED NOVEL AND
EXCEPTIONAL TECHNOLOGY OR
RESEARCH ADVISORY COMMITTEE AND
NEXTRAC TO THINK ABOUT QUESTIONS
OF DATA SCIENCE AND DEFINING
CHARACTERIZING RESEARCH
QUESTIONS REQUIRE INCREASING
GRANULARITY AND DATA FOR
INDIVIDUALS THAT ARE ADDRESSED
FOR EMERGING TECHNOLOGIES AND
NEW THINGS WITH HE CAN DO WITH
DATA HAVE GREAT NEW POTENTIAL
BENEFITS FOR UNDERSTANDING OF
HUMAN HEALTH AND OF COURSE WE
ALSO THEN HAVE TO ENSURE THAT
FOR THOSE QUESTIONS AND
TECHNOLOGIES WE THINK ABOUT
CONSULTING WITH STAKEHOLDERS TO
DISCUSS AND ASSESS VALUE OF AND
POTENTIAL IMPLICATIONS FOR
INDIVIDUAL'S GROUPS AND
SOCIET
SOCIETIES. THERE ARE BENEFIT
AND RISKS TO HAVING THIS DATA
ABOUT INDIVIDUALS USED IN
RESEARCH, OF COURSE.
THIS IS A TWO-PART CHARGE THAT
WAS GIVEN TO THE COMMITTEE.
NEXT SLIDE, PLEASE.
WE -- THE -- THE NEXTRAC STOOD
UP TO LOOK AT THIS CHARGE. A
WORKING GROUP WAS ESTABLISHED TO
START TO WORK ON THIS.
AND THESE -- THE IDEAS AND DRAFT
RECOMMENDATIONS THAT THE WORKING
GROUP COMES UP WITH WILL GO
FORWARD TO THE FULL COMMITTEE.
BUT, FOR THE FIRST PART OF THE
CHARGE, WHICH WAS REALLY ABOUT
DEFINING AND CHARACTERIZING
TYPES OF RESEARCH QUESTIONS WAS
REALLY ADDRESSED TO A LARGE PART
IN THE -- THROUGH A MEETING HELD
LAST SUMMER WITH THE COMMITTEE.
AND REALLY FOR THE SECOND PART
OF THE CHARGE, THAT IS WHAT WE
ARE HERE TO TALK ABOUT TODAY.
THIS WORKSHOP WILL HELP INFORM
DELIBERATIONS BY THE COMMITTEE
TO THINK ABOUT, YOU KNOW,
CONSULTING WITH STAKEHOLDERS TO
DISCUSS THE IMPLICATIONS AND
THAT THE WORKING GROUP SHOULD
CONVENE CONSULTATIONS WITH ANY
NUMBER OF COMMUNITIES THAT MIGHT
BE IMPACTED INCLUDING BUT NOT
LIMITED TO RESEARCH PARTICIPANTS
AND PATIENT GROUPS AND EDGE
CISTS AND PRIVACY EXPERTS AND
THEY HAVE BEEN PART OF COMMUNITY
CONVERSATIONS IN THE LAST FEW
MONTHS. NEXT SLIDE, PLEASETHICS
AND PRIVACY EXPERTS AND THEY
HAVE BEEN PART OF COMMUNITY
CONVERSATIONS IN THE LAST FEW
MONTHS. NEXT SLIDE, PLEASE.
WE HAVE LEARNED HOW IMPORTANT IT
IS TO CULTIVATE TRUST-BASED
PARTNERSHIPS WITH COMMUNITIES
AND INSTITUTIONS AND WORKING
WITH THEM TO BRING IN
PARTICIPANTS IN WAYS THAT MAKES
SENSE FOR THEM AND COMMUNITIES
ADDRESSING QUESTIONS IMPORTANT
TO THEM AND GIVING THEM
SOMETHING EXTREMELY VALUABLE
FROM THAT INTERACTION AND
DEVELOPING BIDIRECTIONAL
ENGAGEMENT THROUGH EFFORTS IS
IMPORTANT AND TO ABSOLUTE ENSURE
THAT FACILITATION HAPPENS WITH
OPEN MIND, RESPECT, AND
HUMILITY. PEOPLE ARE COMING IN
AS EXPERTS ABOUT HEALTH AND HOW
THEY WANT DATE AAH TO BE USED
AND IS IMPORTANT TO APPROACH
CONVERSATIONS IN THAT WAY AND
PLAN PROSPECTIVELY FOR THINKING
ABOUT HOW TO BUILD A
RELATIONSHIP WITH COMMUNITIES
HAVING THIS BE AN ONGOING
DIALOGUE.
NEXT SLIDE, PLEASE.
AND SO I REALLY WANT TO THANK
OUR SCLEBT FAS -- EXCELLENT
FACILITATORS AND COLLABORATORS
THAT WILL BE PART OF THE PANEL
DISCUSSIONS FROM PYXIS.
>>PARTICIPANT: NERS TO TALK
ABOUT IMPORTANT ISSUES THROUGH
COMMUNITY CONVERSATIONS.
NEXT SLIDE, PLEASE.
SOME RESEARCH QUESTIONS I NOTED
WERE DEVELOPED IN THE FIRST PART
OF THE CHARGE WERE TRANSLATED
INTO CASE STUDIES TO FACILITATE
DIALOGUE AND DISCUSSION AND CASE
STUDIES EVOLVED OVER TIME AS WE
LEARNED FROM CONVERSATIONS AND
FIGURED OUT WHAT RESONATED AND
WHAT WAS WORKING AND WHAT COULD
BE IMPROVED.
YOU WILL SEE THROUGH LOTS OF THE
CONVERSATIONS TODAY AND IN
MATERIALS PUT OUT IN ASSOCIATION
WITH THE MEETING THAT, YOU KNOW,
WE AND PYXIS AND NEXTRAC WORKING
GROUP AND DISCUSSIONS AND FOR
PURPOSES TO IDENTIFY COMMUNITY
CONVERSATION PARTICIPANTS HAS
BEEN REMOVED AND WANTED TO NOTE
THAT.
NEXT SLIDE, PLEASE.
AGAIN, I JUST REALLY WANT TO
TAKE THIS TIME TO THANK ALL OF
YOU WHO ARE GATHERED HERE TODAY
TO GATHER ALL THOSE WHO ARE PART
OF COMMUNITY CONVERSATIONS AND
PYXIS AND PAL AIDIAN PARTNERS IN
THIS AND NEXTRAC COMMITTEE AND
WORKING GROUP MEMBERS AND
SCIENCE WRITERS PROVIDING
LONLIST CAL SUPPORT EFFORTS FOR
THIS HAS BEEN A ROBUST AND
EXCITING PROCESS THAT HAS BEEN
DONE IN COLLABORATION WITH A
HUGE NUMBER OF PEOPLE AND I WANT
TO REALLY THANK EVERYBODY.
I'LL TURN IT TO CINNAMON BLOSS
WHO IS THE HOST HERE AT UCSD.
>>GOOD MORNING, EVERYBODY.
THANK YOU SO MUCH, JESSICA, FOR
THAT WONDERFUL SETUP FOR OUR
DAY.
I'M CINNAMON BLOSS AND I'M A
FACULTY MEMBER AT UCSD AND SERVE
AS CHAIR OF NOVEL AND
EXCEPTIONAL TECHNOLOGY AND
RESEARCH ADVISORY COMMITTEE AND
WHAT WE LIKE TO REFER TO AS
NEXTRAC AND WOULD LIKE TO
WELCOME YOU ALL TO SAN DIEGO AND
TO THE UNIVERSITY OF CALIFORNIA,
SAN DIEGO. YOU CAN SEE ON THE
SLIDE THE FULL ROSTER OF OUR
MEMBERS. THESE INDIVIDUALS,
SOME OF WHOM ARE HERE TODAY, ARE
AFFILIATED WITH A WIDE VARIETY
INSTITUTIONS AND UNIVERSITIES
ACROSS THE COUNTRY. NEXT SLIDE,
PLEASE.
JUST FOR A MOMENT, I WOULD LIKE
TO ADDRESS WHY WE THINK NEXTRAC
IS SORT OF WELL-POSITIONED TO
TAKE ON THE CHARGE DESCRIBED BY
JESSICA IN THE PREVIOUS TALK.
FIRST OF ALL, WHEN NEXTRAC WAS
SORT OF IMAGINED, IT WAS SEEN AS
A PUBLIC FORUM AT ITS CORE FOR
DISCUSSION OF SCIENTIFIC SAFETY
AND ETHICAL ISSUES ASSOCIATED
WITH EMERGING AND BIOMEDICAL
TECHNOLOGIES.
WE CONCEPTUALIZE PUBLIC
DELIBERATION AND ENGAGEMENT
BEING CENTRAL TO HOW WE
DELIBERATE AND ADVISE NIH ON
THESE ISSUES.
NEXT SLIDE, PLEASE.
SO, WHEN OUR COMMITTEE WAS
FORMED IN 2019, WE WERE GIVEN
TWO INITIAL CHARGES.
THE FIRST ONE WAS TO CONSIDER
AND SET UP A PROCESS HOW WE
OPERATE AND HOW WE SELECT ISSUES
FOR DELIBERATION AND WHAT TOOLS
AND METHODS WE USE AND AS I
MENTIONED, PUBLIC ENGAGEMENT WAS
REALLY -- IS CONCEPTUALIZED AS A
KEY CENTRAL WAY WE APPROACH OUR
WORK.
AT THIS TIME WE WERE CHARGED
WITH FOCUSING AND HONING IN ON A
SPECIFIC TECHNOLOGY KNOWN AS
GENE DRIVE. FOR MANY MONTHS, WE
DID A DEEP DIVE ON THIS
PARTICULAR TECHNOLOGY PROVIDING
RECOMMENDATIONS TO NIH AND HAD
AN OPPORTUNITY TO REALLY
LEVERAGE AND USE SOME OF THE
PROCESS MEASURES OUTLINED IN OUR
FRAMEWORK REPORT. NOW, WITH THE
THIRD CHARGE THAT WAS JUST
DESCRIBED, WE ARE TAKING A BROAD
HORIZON-SCANNING VIEW OF THIS
CRITICALLY IMPORTANT TOPIC OF
DATA SCIENCE AND IN BIOMEDICAL
RESEARCH AND GIVEN THE BREADTH
OF THIS TOPIC AND WAY WE ARE
APPROACHING IT, THIS THIRD
CHARGE IS REALLY AN OPPORTUNITY
ALSO TO INTEGRATE WHAT I THINK
IS CORE TO OUR COMMITTEE AND
INTEGRATE A ROBUST PUBLIC
ENGAGEMENT APPROACH.
SO, NEXT SLIDE, PLEASE.
SO, I'M LOOKING FORWARD TO TODAY
TO -- YOU KNOW, WE MADE CHOICES
AS JESSICA MENTION THE PURSUING
PUBLIC ENGAGEMENT COMPONENT FOR
THIS CHARGE AND LOOKING FORWARD
TODAY TO SORT OF HEARING AND
REFLECTING ON THAT PROCESS AND
HEARING FROM THE PEOPLE THAT
HAVE GATHERED HERE TODAY.
THEIR KIND OF CONTEXTUALIZATION
OF WHAT WE HEARD.
ALSO, TO IDENTIFY MAYBE
STRENGTHS AND AREAS FOR
IMPROVEMENT FOR FUTURE TOPICS
THAT NIH MAY WANT ADVICE ON AND
MAY SORT OF PITCH TO THE NEXTRAC
TO WORK ON. SO, I'M REALLY
LOOKING FORWARD TO THAT PROCESS.
THANK YOU ALL FOR BEING HERE
TODAY.
NEXT SLIDE, PLEASE.
I JUST WANT TO ECHO JESSICA'S
THANKS TO PYXIS PAL AID YUM AND
WORKING GROUP MEMBERS AND THOSE
GATHERED HERE TODAY AND THOSE
TUNING IN ONLINE AS WELL.
THANKS SO MUCH. NEXT SLIDE,
PLEASE.
ALL RIGHT. NOW, I WILL TAKE THE
OPPORTUNITY TO TURN THIS OVER TO
PILAR OSSORIO AND SACHIN
KHETERPAL. I WILL TURN IT OVER
TO THEM TO REALLY SET THE STAGE
FOR THE REST OF THE DAY. THANK
YOU.
>>THANK YOU TO KRINL AMONDAY
AND JESSICA FOR KICKING US OFF
HERE TODAY. I WILL TELL YOU
WHAT THE WORKING GROUP HAS DONE
SO FAR. THIS, HERE YOU SEE THE
MEMBERS OF THE WORKING GROUP.
SOME ARE FROM NEXTRAC AND SOME
ARE NEXT SLIDE, PLEASE.
WE HAVE TWO SETS OF QUESTIONS.
FIRST, TO DEFINE AND
CHARACTERIZE TYPES OF RESEARCH
QUESTIONS THAT NIH SHOULD BE
THINKING ABOUT AS WE GO FORWARD
WITH RESPECT TO DATA SCIENCE AND
THE NEED FOR ETHICS AND
GOVERNANCE AND SO FORTH.
SO, WHEN WE THOUGHT ABOUT THIS,
WE DIDN'T JUST THINK ABOUT SORT
OF QUESTIONS BUT WHAT ARE THE
THINGS ABOUT PARTICULAR RESEARCH
QUESTIONS THAT WOULD MAKE THEM
WORTHY OF MAYBE A SPECIAL LOOK
WITH RESPECT TO GOVERNANCE AND
ETH
ETHICS.
THEN OUR FIRST PART WAS COMING
UP WITH IDEAS ABOUT THE RESEARCH
THAT NIH NEED TODAY PAY
ATTENTION TO AND SECOND PART AS
YOU HEARD WAS TO CONSULT WITH
VARIOUS STAKEHOLDERS.
NEXT SLIDE, PLEASE.
THIS IS OUR TIMELINE. WE SPENT
A COUPLE MONTHS IDENTIFYING
RELEVANT RESEARCH QUESTIONS AND
KINDS OF THEMES AROUND THAT
RESEARCH THAT WOULD RAISE
PARTICULAR CONCERNS AND WE MET
WITH LOTS OF SUBJECT MATTER
EXPERTS AND MANY ON THE WORKING
GROUP ARE PEOPLE WITH EXPERTISE
IN ETHICS AND EVEN IN COMMUNITY
ENGAGEMENT IN GOVERNANCE OF
SCIENCE AND WE ARE NOT MOST OF
US ALTHOUGH SOME ARE SUBJECT
MATTER EXPERT BUZZ MOST ARE NOT
DATA SCIENTISTS. WE MET WITH
LOTS OF DATA SCIENTISTS TO HELP
US UNDERSTAND THE LANDSCAPE FROM
THEIR PERSPECTIVE AND HELP US
UNDERSTAND TECHNOLOGIES BETTER.
BEGINNING IN OCTOBER, WE BEGAN A
SERIES WITH INCREDIBLE HELP OF
PYXIS AND BEGAN A SERIES OF
CONVERSATIONS WITH DIFFERENT
COMMUNITIES YOU WILL HEAR MORE
ABOUT THAT OR WITH INDIVIDUALS
FROM DIFFERENT COMMUNITIES AND
YOU WILL HEAR MORE ABOUT THOSE
CONVERSATIONS AS WE GO
THROUGHOUT THE DAY.
SEVERAL OF US THROUGHOUT THE
WORKING GROUP PARTICIPATED IN
ONE OR MORE CONVERSATIONS AND WE
ARE NOW GETTING INTO THE PHASE
OF WRITING OUR REPORTS THAT IS
WHAT WILL BE GOING ON AND
FEEDBACK TODAY WILL HELP IN THAT
REGARD.
RIGHT?
I THINK THAT THE REPORT SHOULD
BE COMING OUT IN OR TOWARD THE
END OF SUMMER AND NEXT SLIDE,
PLEASE.
>>IN THINKING ABOUT WHAT KINDS
OF RESEARCH WOULD BENEFIT FROM
ADDITIONAL LOOK BY NIH OR WHAT
RESEARCH NIH HAS TO ANTICIPATE
AND THINK ABOUT GOVERNING AND
WORKING GROUP CAME UP WITH A
NUMBER OF THEMES AND SOME DRAW
CAREFULLY FROM NEXTRAC FRAMEWORK
REPORT AND THINGS THAT IF
RESEARCH INVOLVES AT LEAST SOME
OF THESE CONSIDERATIONS, THEN IT
MAY NEED ADDITIONAL GOVERNANCE
OR WE NEED TO UNDERSTAND WHETHER
OR NOT THAT RESEARCH MIGHT FALL
THROUGH CRACKS OF EXISTING
GOVERNANCE.
I WON'T GO THROUGH ALL THESE.
IF RESEARCH OR NEW USE OF DATA
SCIENCE TECHNOLOGY RAISES
PARTICULAR ISSUES AROUND SAY
ACCUMULATING DATA THAT PEOPLE
MIGHT THINK OF AS PARTICULARLY
SENSITIVE OR USING NEW KINDS OF
DATA THAT HAVE NOT BEEN REALLY
USED IN BIOMEDICAL RESEARCH
BEFORE ARE KINDS OF ISSUES WE
THOUGHT MIGHT RAISE GOVERNANCE
CONCERNS OR MIGHT BE BROUGHT TO
NIH'S ATTENTION AND THOUGHT
ABOUT NEXT SLIDE, PLEASE.
WE ENDED UP BOILING DOWN ALL OUR
RESEARCH QUESTIONS INTO THESE
THREE MAJOR TOPICS.
THEY INFORMED CASE STUDIES THAT
WERE USED FOR PUBLIC
CONVERSATIONS OR PUBLIC
ENGAGEMENTS.
ONE HAD TO DO WITH NOVELTY OF
DATA AND IN PARTICULAR THINKING
OF STUDIES AND RESEARCH
QUESTIONS THAT WOULD BE
ADDRESSED USING KINDS OF DATA
THAT HISTORICALLY PEOPLE DON'T
THINK OF AS HEALTH OR MEDICAL
RELATED DATA. IF COMING FROM
BIOMEDICAL RESEARCH OR
ELECTRONIC HEALTH RECORDS PEOPLE
UNDERSTAND IT AS HEALTH-RELATED
DATA OR THOUGHT THEY WOULD. IF
IT COMES FROM YOUR CREDIT AGENCY
OR EVEN MAYBE YOUR WEARABLES OR
LOTS OF OTHER PLACES THAT DATA
FOR BIOMEDICAL RESEARCH COULD BE
COMING THESE DAYS, WE THOUGHT
THAT, THAT MIGHT RAISE
ADDITIONAL QUESTIONS IN THE
MINDS OF PEOPLE WHOSE DATA WE
WOULD USE OR RESPECT TO THE FACT
THAT, YOU KNOW, DIFRNL KINDS OF
DATA GENERATED IN DIFFERENT
CONTEXTS MIGHT HAVE DIFFERENT
LEGAL REGIMES ASSOCIATED WITH
THEM AND DIFFERENT SORT OF
ETHICAL NORMS OR DATA COLLECTED
IN CONSUMER CONTEXT AND THERE
ARE DIFFICULT OR DIFFERENT NORMS
AROUND DATA HISTORICALLY THAN
THERE HAVE BEEN AROUND RESEARCH
DATA AND THINK THAT AGGREGATING
OR LINKING DIFFERENT DATA MIGHT
RAISE NEW QUESTIONS OR QUESTIONS
THAT NIH WILL NEED TO CONFRONT
IN A MORE EXPLICIT WAY AND USE
OF MORE ADVANCED COMPUTATIONAL
ALGORITHMS AND MODELS THAT
MACHINE LEARNING PRODUCED;
RIGHT? THIS IS ANOTHER ISSUE
BECAUSE OF COMPLEXITY AND
SOMETIMES LACK OF TRANSPARENCY
AND SO FORTH WE THOUGHT MIGHT
RAISE ADDITIONAL ISSUES.
FINALLY, AS I SAID, NOT JUST
DIFFERENT KINDS OF DATA BUT
SPECIFIC PROCESS OF LINKING DATA
AND AGGREGATING DATA MEANS
ADDING NEW PEOPLE'S DATA YOU TO
THE DATA SET MAKING IT BIGGER IN
THAT WAY AND LINKING DATA MEANS
TAKING DATA SETS THAT INCLUDE
THE SAME PERSON AND LINKING THAT
PERSON'S DATA FROM TWO DIFFERENT
DATA SETS TOGETHER SO THAT YOU
ARE MAKING DATA ABOUT THEM
HIGHER DIMENSIONAL; RIGHT?
SO, THAT COMES WITH ITS OWN SET
OF ISSUES.
AND I HAVE TO SAY THAT THIS IS
SOMETHING THAT IN MY OWN JUST
QUICK KIND OF PAR USUAL OF THE
ETHICS AND POLICY LITERATURE IS
SOMETHING HAPPENING A LOT IN THE
COMMERCIAL SPACES AND IS
SOMETHING THAT RESEARCHERS ARE
ALSO DOING AND YET THERE IS VERY
LITTLE WRITTEN ABOUT IT FROM THE
GOVERNANCE OR ETHICS PE
SPECULATIVE. TO ME, THIS IS A
SUPER INTERESTING TOPIC. I
MEAN, THEY ARE ALL INTERESTING.
BUT, ALL RIGHT. SO, NEXT SLIDE,
PLEASE. I THINK I WILL HAND OFF
TO SACHIN TO TALK ABOUT SORT OF
OUR PUBLIC ENGAGEMENT AND WHAT
WE WILL DO GOING FORWARD. THANK
YOU.
>>GOOD MORNING, EVERYBODY.
THANK YOU ALL THOSE WHO HAVE
COME BEFORE. SO, AS WE DISCUSS
THE FIRST PART IS WHAT WE HAVE
DONE CLASSICALLY IN THE
BIOMEDICAL RESEARCH COMPLEX
WHICH IS HELP OUT WITH
SCIENTISTS AND TALK TO EACH
OTHER AND CONVINCE EACH OTHER OF
A PATHWAY. THIS GROUP IS TRYING
TO GO TO THE STAKEHOLDER GROUP
YOU SAW CHARGED TO US BY NIH
RESEARCH PARTICIPANTS AND
PATIENT GROUPS AND THOSE
EXPERIENCING CHOICES AND THOSE
THAT SHOULD INFORM GUIDELINES
MAYBE ARE COMING FORWARD WITH.
THIS IS A REALLY EXCITING
OPPORTUNITY FOR US TO DO
SOMETHING YOU TYPICALLY DON'T
THINK OF WHEN THINKING OF DATA
SCIENCE THAT IS GO TALK TO
PARTICIPANTS PUTTING PEOPLE BACK
IN DATA SCIENCE AND I HAVE AN
ADVANCED SLIDE. LET ME DO THIS.
I WILL GO TO THE NEXT SLIDE,
PLEASE.
SO, IN PHASE 2, WE COLLECTED
INPUT NOT JUST FROM SCIENTISTS
THAT WE ARE ALL PART OF AND WE
ENJOY BUT IS I THINK DIFFERENT
THAN THE CLASSIC PUTTING IT INTO
THE FEDERAL ARE ENL STER THAT IS
TAKING PEOPLE WHO DON'T READ THE
FEDERAL REGISTER THAT IS OUR
CONSTITUENTS AND RESEARCH
PARTICIPATANT AND FOLKS THAT ARE
GROUPED FOR STUDIES AND GO SPEAK
WITH THEM AND EXCITING STUDY FOR
US TO DO IT AS A DEDICATED TO
FOCUS FOR THE ACTIVITY AND NOT
SOMETHING WE MELD INTO ANOTHER
PART THAT WE BROUGHT TOGETHER
THAT HAD A FOCUS OF
SEVERAL-MONTH EFFORT SPEAKING TO
PARTICIPANT AND DEBRIEFED
INTERACTIONS INFORMING OUR NEXT
INTERACTION. NEXT SLIDE,
PLEASE.
FORMS ARE A MIXTURE OF DIFFERENT
MEDIA AS WELL. 6 IN-PERSON
EVENT AND SEVERAL VIRTUAL EVENTS
AS WELL. 6 IN-PERSON EVENTS,
TWO IN NEW YORK ONE NEXT LMOSA
COLORADO AND ONE IN JACKSON
MISSISSIPPI AND ONE IN MICHIGAN
AND VIRTUAL WEBINARS COMING TO
REALITY THAT PARTICIPATANT AND
FOLKS TRYING TO LEARN FROM CAN'T
DRIVE NECESSARILY TO IN-PERSON
EVENT AND LAST COUPLE YEARS
TAUGHT US CONCEPT OF IN-PERSON
EVENT HAS CERTAIN ADVANTAGES WE
ARE EXPERIENCING TODAY BUT ARE
INCLUSIVITY AND ACCESS ISSUES
THAT PRESENT AS CHALLENGING TO
DRIVE SOMEWHERE AND SEVERAL
VIRTUAL EVENTS ADDRESSING
COMMUNITIES POTENTIALLY DUE TO
GEOGRAPHICAL ISSUES CAN'T ATTEND
AN IN-PERSON EVENT. NEXT SLIDE,
PLEASE.
THIS IS INVOLVED ONCE AGAIN A
LOT OF WORK FROM PYXIS AND
PARTNERS AND CONSISTENCY OFFERED
ACROSS EVENT AND EXPERTISE
PARTICIPANT ENGAGEMENT IS IT
ITSELF AND WHAT THEY BROUGHT TO
US. NEXT SLIDE. WAY THEY WERE
ARRANGED IS IN-PERSON EVENTS
WERE 4-HOUR EVENTS REACHING OUT
TO COMMUNITY LEADERS IDENTIFYING
PARTICIPANTS THEY FELT WERE
REASONABLE AND THEY AS TRUSTED
COMMUNITY LEADERS HAD DIFFERENT
RELATIONSHIPS WITH POTENTIAL
PARTICIPANT AND THEY WOULD
INVITE THEM AND BRING THEM IN IN
TRUST ENVIRONMENT AND PYXIS
WOULD HELP COORDINATE LOGISTICS
OF IT AND WE TRIED TO LEARN FROM
ONE TO ANOTHER AND HAVE
CONSISTENCY AND SPECIFIC CASE
STUDIES THAT EACH OF THE
PARTICIPANTS WERE ORIENTED TO
AND HAD PRE-MEETINGS WITH
POTENTIAL PARTICIPANTS AND
WEBINARS TO DISCUSS AND CAME IN
WITH PARTICULAR FRAME OF MIND
AND WITH RECRUITMENT EFFORTS TO
GET IN A COMMUNITY DIVERSE AND
REPRESENTATIVE SAMPLE OF FOLKS
THAT COULD JOIN US.
THESE WERE EXCEPTIONAL EVENT AND
THOSE WITH OPPORTUNITY TO ATTEND
THEM REALLY ENJOYED THEM.
WHAT WE DID WAS IN CASE STUDIES
WE HAD SEVERAL DIFFERENT TOPICS.
EACH TOPIC HAD SPECIFIC CASE AND
EXAMPLE YOU SEE HERE TOPIC 1 IS
REGARDING HOW FOLKS WOULD FEEL
ABOUT THE CONCEPT OF NEW DATA
TYPES AND CENSORS FOR EXAMPLE
WEARABLE IDENTIFYING CARDIAC
SIGNALS IDENTIFYING POTENTIAL
RISKS FOR CARDIAC DISEASE AND
EVENT AND HOW FOLKS WOULD FEEL
ABOUT AGO DWAETING DATA AND
SHARING THAT. WHAT PRESENTED A
LITTLE MORE CHALLENGE IS INSTEAD
OF IT BEING YOUR PERSONAL ADVICE
HOW ABOUT AN OLDER ADULT OR
FAMILY MEMBER WHO IS LIVING AT
HOME AND MIGHT NEED ASSISTANCE
OCCASIONALLY AND HOW WE WOULD
CONSIDER EVASIVENESS AND
ASSISTNESS THAT DEVICE COULD
PROVIDE IN THEIR HOME AND WAS
EXCITING DIALOGUE TO HAVE I WILL
BE HONEST. INTERESTING
PERSPECTIVES WERE OFFERED THERE
AND WE HAD ANOTHER MORE BROAD
USE CASE THAT WAS RATHER THAN
FOCUSING ON INDIVIDUALS ONE THAT
FOCUSED ON COMMUNITIES IN
GENERAL. THIS WAS A SOCIAL
MEDIA CONCEPT ALGORITHMS TO
DETECT LOOKING AT SOCIAL MEDIA
POSTS TO BE AT RISK FOR SUICIDE
OR SELF-HARM AND BENEFITS RISK
OF ALGORITHM BEING DEVELOPED AND
DEPLOYED AND DOING RESEARCH ON
THAT TYPE OF ALGORITHM ENTIRE
CONCEPT WAS GOING FROM THE SELF
AND INDIVIDUAL TO COMMUNITIES
AND IMPACT WE COULD HAVE ON
COMMUNITIES AT LARGE AND KNOWING
IT TAKES COMMUNITY OF SOCIAL
MEDIA INTERACTIONS TO ACTUALLY
MAKE PROGRESS THERE AND FINAL
USE CASE SCENARIO THAT WAS
REALLY CORE OF DATA LINKAGE
QUESTION WE DISCUSSED THAT WAS
IF A RESEARCH PARTICIPANT SIGNS
UP FOR A PARTICULAR STUDY AND IT
THAT STUDY INCLUDES THE ABILITY
TO LINK DATA TO OTHER PROJECTS
AND ANOTHER PROJECT CONTACTS
THAT PARTICIPANT, HOW WOULD THEY
FEEL ABOUT THAT OR EVEN
UNDERSTAND THAT IS HOW THEY WERE
CONTACTED LIKE WHEN YOU GET A
PHONE CALL FROM TELEMARKETER HOW
DO YOU KNOW I JUST BOUGHT A TOY
OATA AND WAIT A SECOND THAT
CONCEPT OF BIOMEDICAL RESEARCH
EXPERIENCE THAT WE ALL HAVE HAD
SITTING AT HOME. NEXT SLIDE,
PLEASE PROCESS GOING THROUGH
CASE STUDIES AND SOME QUESTIONS
WE POKED AND PRODDED TO BRING
THINGS UP AND WE LET PEOPLE
REACT TO IT GIVING OPEN-ENDED
ANSWERS SO OUR DESIRES ARE NOT
DRIVE WILLING WITH WHAT THEY
SPOKE WITH. FIRST, PEOPLE GIVE
GENERAL REACTIONS AND OPEN-ENDED
SET OF QUESTIONS BECAUSE
COMMUNITIES WERE LED BY
COMMUNITY LEADERS AND
PARTICIPANTS WERE THERE AND
THERE IS TRUST AND NEAT TO SEE
DIFFERENT PARTICIPANTS MAY NOTE
EACH OTHER AND ONE GROUP AND
CONNECTIVITY PEOPLE FEEL
COMFORTABLE SPEAKING UP AND
IMPORTANT IN ENGAGEMENT
INTERACTIONS AND WE HAD SPECIFIC
QUESTIONS WE WANTED REACTIONS TO
THERE WERE WRITTEN RESPONSES
THAT WERE RECORDED AS MENTIONED
AND RECORDINGS WERE DEIDENTIFIED
AND NOTES WERE USED TO HELP US
COME UP WITH ADDITIONAL CONCEPTS
DISTILLING WHAT WE HEARD THAT
DAY.
AND MANY INDIVIDUALS WOULD BRING
PERSONAL [INDISCERNIBLE] AND
CONVERSATIONS WE WERE HAVING
WERE INTERESTING AND WOULD BRING
UP PERSONAL EXAMPLES INFUSING
INTO USE CASE WE PRESENT WHICH
IS IMPORTANT RATHER THAN BEING
OWN SCENARIOS I HAD SCENARIO MY
FAMILY MEMBER NEEDED THIS AND
REALLY WAS TO SEE PARTICIPANTS
BRING OWN USE CASES TO INFORM
THOSE. NEXT SLIDE, PLEASE.
SO, A LOT OF WORK WENT INTO THEN
REVIEWING COMMENTS AND REVIEWING
CONATIVERSATIONS WE HAD FOLKS
REVIEWING AND TAKING NOTES
DURING THOSE AND IMPORTANT TO
NOTE MAJOR THEMES WE SAW COMING
OUT OF THAT. THIS IS EFFECTED
BY HOW WE -- WHAT WE HEARD.
SOME OF THE MAJOR THINGS WE
HEARD WAS OVERALL SUPPORT FOR
DATA SHARING THAT DEPENDED UPON
WHO WAS RECEIVING DATA AND WAS
ALWAYS VERY CHALLENGE RING FOR
THEM TO UNDERSTAND WHO IS
RESEARCHER AND COMPANY AND ONE
DOING RESEARCH AND WHO IS
KEEPING IT AND MANY SCENARIOS
INVOLVED IN INTERMEDIARY AND
DEVICE AND COMMERCIAL PRODUCT
AND RESEARCHER POTENTIALLY
SOMEWHERE IN THAT PANELWAY OR
END OF THE PANELWAY AND
DEPENDING WHO IS RECEIVING DATA,
SUPPORT VARIED AND WHETHER THEY
DEEMED THAT ENTITY TO BE
TRUSTWORTHY AND HEARD COMMENTS
SUCH AS I TRUST MY DOCTOR. THEN
WE HAD PROBE DO YOU TRUST
DOCTORS OR YOUR DOCTOR OR
ADVANCED PRACTICE PROVIDER AND
NUANCE IS IMPORTANT TO
UNDERSTAND WHO THEY TRUST WLD A
CLINICAL ROUND OR NOT AND THEY
DID THE THING WE HOPE FOLKS DO
WHICH IS DO A RISK BENEFIT
ASSESSMENT AND WHAT ARE
POTENTIAL REAL BENEFITS HOW
THEORETICAL BENEFITS ARE VERSUS
HOW REAL BENEFITS ARE THEY FELT
RISKS WERE REAL AND PRIVACY
RISKS THEY ASSESSED WERE REAL
AND DID ON DAILY BASIS POTENTIAL
SOCIETAL OR INDIVIDUAL BENEFIT
IS IT. THEIR SUPPORT DEPENDED
ON PERCEPTION OF THAT BALANCE.
THEY WERE A LITTLE CONCERNED AND
THEY EXPRESSED IT REPEATEDLY
AROUND HOW LITTLE THEY KNEW
ABOUT HOW THEIR DATA WAS BEING
SHARED ALREADY THAT IS A REALLY
NEAT I WILL INSERT A FACTOR THAT
IS NOT REALISTIC NOT SURE
BIMODAL DISTRIBUTION OR WIDE
RANGE AND DATA USED IN DIFFERENT
WAYS AND LINKAGES THAT ARE
HAPPENING AND SAME TIME SEEING
PARTICIPANTS SAY WHAT YOU CAN DO
THAT AND YOU SAW A WIDE RANGE OF
PERCEPTIONS AND KNOWLEDGE THAT
IS HAPPENING IN DATA AND WERE
CONCERNED EXTREMELY ABOUT HOW
LITTLE CONTROL THEY HAD ABOUT
WHAT WAS ALREADY HAPPENING WAS
REALLY SEEING THE PARTICIPANTS
LEARN FROM EACH OTHER THROUGH
THAT PROCESS AND WE LEARNED FROM
A GENERAL THEME THEY REALLY
WANTED MORE TRANSPARENCY ABOUT
WHAT WAS HAPPENING WITH DATA AND
THOSE PERCEIVING AND
UNDERSTANDING WHAT WAS HAPPENING
THEY ASSUMED IT WAS HAPPENING
ALL THE TIME WHETHER OR NOT THEY
WANTED IT TO BE HAPPENING AND IS
NOT REAL EITHER AND GUARD RAILS
IN PLACE AND MORE TRANSPARENCY
HAPPENING FROM THOSE THAT FELT
THEY WERE AWARE OF IT AND THOSE
LESS AWARE OF IT AND FIN WILL I
SOME MOR CERTAINTY THAT IS
REGARDING BENEFITS THAT ARE OUT
THERE. SO, SOME MORE CONCRETE
ASSESSMENTS OF WHAT BENEFIT IS
POSSIBLE AND ASSURANCE THAT
BENEFITS MIGHT BE WORTH THOSE
POTENTIALS.
THESE ARE HIGH-LEVEL THEMES
GOING INTO ADDITIONAL DETAILS
WITH PANELS AND DIGGING INTO
DIFFERENT SCENARIOS.
NEXT SLIDE, PLEASE.
IN CONCLUSION, WE HAVE HAD AN
EXCITING COUPLE OF MONTHS
TOGETHER. WE ARE NOT QUITE DONE
YET. THAT IS PART OF OUR TIME
TODAY TO BRING THOSE CONCEPTS
TOGETHER AND LAUNCH US INTO A
WRITING PHASE AND TO HAVE SOME
DISTILLATION OF THOSE IDEAS AND
TODAY WE WILL BE ORGANIZE THE AS
YOU HAVE IN YOUR AGENDA AND ARE
CURRENTLY ON SCHEDULE, I
BELIEVE. 5 MINUTES AHEAD. WE
WILL HAVE A BREAK STARTING NOW
AND WILL DIG INTO TWO PANELS
STARTING AT 10 A.M. PACIFIC TIME
AND WILL HAVE ONE PANEL AND A
LUNCH BREAK AND TWO PANELS AND
THEN A FINAL PANEL THAT KIND OF
BRINGS ALL IDEAS TOGETHER AND
THEMES.
AS MENTIONED EARLIER, PLEASE
THOSE JOINING ONLINE E-MAIL
QUESTIONS DURING ONLINE SESSION
OR THEREAFTER TO SCIENCE POLICY
AT OD.NIH.GOV AND READ ALOUD
DURING INTERACTIONS TODAY AND
USING TO GUIDE INTERACTIONS
GOING FORWARD.
WITH THAT, I WILL PAUSE AND GIVE
OURSELVES A 20 MINUTE BREAK
UNTIL 10 A.M. PACIFIC TIME.
THANK YOU, EVERYBODY.
>>WELCOME BACK. I'M CINNAMON
BLOSS. MY PLEASURE TO KICK OFF
THE FIRST PANEL TODAY.
-- IS AN ASSOCIATE PROFESSOR OF
ENGINEERING SYSTEMS AND
ENVIRONMENT AND RESEARCH FOCUSES
ON UNDERSTANDING AND DESIGNING
SOLUTIONS -- I WOULD LIKE TO
INTRODUCE KOLBI BROWN A DIRECTOR
AT PYXIS PARTNERS WORKING TO
FURTHER THE FIRM'S GOALS AND
HEALTH INITIATIVES OF THE
COMPANY AND NIH ALL OF US
PROGRAM AND WOULD LIKE TO
INTRODUCE JENNIFER WAGNER AN
ASSISTANT PROFESSOR OF LAW AND
POLICY AND ENGINEERING AND
RESEARCH FOCUSES ON -- DESIGN
AND MATTERS OF
NON-DISCRIMINATION PRIVACY AND
EQUITY WITH HEALTH TECHNOLOGIES
AND FINALLY AARON COLLMAN,
FOUNDER AND CEO OF FITABASE.
I FEEL GRATEFUL YOU ARE ALL ABLE
TO JOIN US TODAY.
THE TOPIC FOR OUR FIRST PANEL
HERE IS FOCUSED ON NOVEL DATA
TYPES USED OUTSIDE OF THE
TRADITIONAL HEALTH CARE SYSTEM
AND BRIEF REMINDER FOR THOSE
TUNING IN YOU MAY SUBMIT YOUR
QUESTIONS TO SCIENCE AT
OD.NIH.GOV.
NEXT SLIDE, PLEASE.
ALL RIGHT. JUST A REMINDER
ABOUT OUR PROCESS FOR TODAY.
WE WILL HONE IN ON RESEARCH
TOPIC MENTIONED DATA THAT IS
COLLECTED AND USED THAT ARE
GENERATED OUTSIDE OF THE HEALTH
CARE SYSTEM AND SAZ SACHIN
REVIEWED IN THE LAST TALK
WORKING GROUP IDENTIFIED THIS AS
AN IMPORTANT TOPIC. WE
DEVELOPED TWO DIFFERENT CASE
STUDIES THAT REFLECT THIS TOPIC.
FIRST ONE THAT IS FOCUSED ON
WEARABLE APP AND SOCIAL MEDIA
DATA TO MONITOR HEART HEALTH AND
SECOND CASE STUDY ON IN-HOME
CENSORS AND SMART DEVICES TO
MONITOR OLD AND RELATIVE HEALTH.
IF YOU WOULD LIKE TO LOOK AT A
DETAILED DESCRIPTION OF THE KAIS
STUDIES THEY ARE ONLINE ON THE
WEBSITE. WE WILL CONTEXTUALIZE
PUBLIC FEEDBACK THROUGH CASE
STUDIES THROUGH LENS OF RESEARCH
AND APPLICATION TO CLINICAL AND
PUBLIC HEALTH CONTEXT WITH HELP
OF PANELISTS THAT JOINED US
TODAY. OUR GOAL IS TO REALLY
THINK ABOUT HOW WE INTEGRATE
PUBLIC FEEDBACK TO ASSESS
IMPLICATIONS FOR DEVELOPMENT OF
NIH'S PROGRAMS AND POLICIES.
NEXT SLIDE, PLEASE.
ALL RIGHT. SO, THERE IS QUITE A
BIT OF FEEDBACK GAINED THROUGH
THE NUMBERS OF SESSIONS WE HAD
THAT WERE DESCRIBED PREVIOUSLY.
AGAIN, IF YOU WANT TO READ MORE
DETAILS, THERE IS A MUCH MORE
DETAILED SUMMARY POSTED ONLINE.
HERE IS A TUM OF THE KIND OF
TOP-LEVEL FEEDBACK WITH REGARDS
TO THIS FIRST QUESTION. FIRST
OF ALL, IN GENERAL PARTICIPANTS
SUPPORTED SHARING DATA TO
IMPROVE THEIR OWN HEALTH AND
HEALTH OF INDIVIDUALS IN THEIR
COMMUNITY INCLUDING FOR RESEARCH
PURPOSES AND THEY WANTED
REASSURANCES, HOWEVER, PRIVACY
WOULD BE PRODUCTIVE SHARING
PERSONALIZED IDENTIFIABLE DATA
AND RESEARCH FROM SOCIAL MEDIA
AND ONE OF THE FORMS OF DATA
THAT IS OBVIOUSLY GENERATED
OUTSIDE OF THE HEALTH CARE
SYSTEM WE CAN TALK ABOUT HERE
TODAY.
THEY -- IF DATA COULD BE
PROTECTED AGAINST MISUSE, MANY
PARTICIPANTS WERE ENTHUSIASTIC
ABOUT CONTRIBUTING TO RESEARCH
AND ADDRESSING HEALTH ISSUES IN
THEIR OWN COMMUNITIES AND
SUPPORT FOR SHARING DATA WAS
DEPENDENT ON WHO WOULD RECEIVE
DATA AND WHETHER THEY WERE
TRUSTWORTHY OR PERCEIVED AS
BEING TRUSTWORTHY.
NEXT SLIDE, PLEASE.
OKAY. SO, I WILL KICK OFF THIS
PANEL WITH PANELIST REFLECTIONS
AND IN PARTICULAR, YOU KNOW, I
HAVE ASKED PANELISTS TO THINK
ABOUT WHAT WE ARE INITIAL
IMPRESSIONS FROM THE FEEDBACK
THAT YOU -- THAT YOU READ.
HOW -- WHAT PARTICULAR
PERSPECTIVE OR CONTEXT YOU BRING
TO THOSE REACTIONS.
SO, I'M ACTUALLY GOING TO START
WITH COLBY.
COLBY BRINGS A UNIQUE AND KEY
PERSPECTIVE TO THE PANEL AS ONE
PERSON WHO LED AND FACILITATED
ENGAGEMENT SESSIONS WE HEALED
WITH PARTICIPANTS.
KOL BI, WHAT WERE SOME OF YOUR
TAKEAWAYS AS A FACILITATOR?
WERE THERE PARTICULAR ANECDOTES
OR DISCUSSIONS THAT STUCK WITH
YOU AND ANY SURPRISES?
WE WILL HEAR FROM YOU. LY PASS
IT TO THE REST OF THE PANELISTS.
>>OF COURSE. GOOD MORNING AND
THANK YOU FOR THE INTRODUCTION.
YOU KNOW, IT IS A REAL PRIVILEGE
TO BE ABLE TO HAVE OR
PARTICIPATE IN COMMUNITY
CONVERSATIONS AND IN TERMS OF
THERE ARE MANY, MANY THOUGHTS
THAT I HAVE.
WHAT REALLY STRUCK ME FIRST AND
FOREMOST IS THE WILLINGNESS OF
THESE COMMUNITIES TO LEARN AND
LISTEN ABOUT THESE TOPICS.
THERE WERE INDIVIDUALS WHO SO
DEEPLY CARE ABOUT HELP OF THEIR
COMMUNITIES AND THEIR OWN
PERSONAL HEALTH AND ARE REALLY
CURIOUS ABOUT THE TANGIBLE
BENEFITS OF PARTICIPATING AND IN
RESEARCH AND EXPLORING THESE
NOVEMBEREL TECHNOLOGIES.
THAT, I -- IN SOME OF MY
PREVIOUS WORK KNOWING ABOUT HOW
-- KNOWING, OF COURSE, PEOPLE
CARE ABOUT THEIR COMMUNITIES AND
THESE ARE PASSIONATE GROUPS WE
ARE ABLE TO MEET WITH. WITH
THAT BEING SAID, WHERE I ALSO
WAS SURPRISED WAS AS WE ARE
TALKING ABOUT RESEARCH, AND
WHERE WE ARE GOING, THERE REALLY
DID SEEM TO BE A LARGE
DISCONNECT BETWEEN, YOU KNOW,
ONE CASE STUDY WE USE IS
CARDIOVASCULAR DISEASE AND IN
USING SOCIAL MEDIA AS A TOOL TO
HELP IN THAT CARE.
AND PEOPLE HAD A HARD TIME
MAKING THE LEAP INTO HOW
PROVIDING SOCIAL MEDIA ACCESS TO
OUR RESEARCHER AND ULTIMATELY
WHAT IMPACT THEIR HEALTH
LONG-TERM.
I WAS STRUCK ABOUT ONE WHERE THE
CONCEPTS THAT PEOPLE HAVE THAT
ARE REGARDING WHAT RESEARCH DOES
VERSUS OR DOESN'T DO VERSUS
WHERE THE FIELD IS ACTUALLY
MOVING.
THE LAST THING I WILL SAY IS
JUST THINKING ABOUT THE RETURN
OF VALUE TO PARTICIPANTS AND
UNDERSTANDING THAT THERE IS A
REALLY HIGH THRESHOLD AND BAR
THAT INDIVIDUALS AND
COMMUNITIES, I THINK, ARE
LOOKING FOR FROM RESEARCHERS IF
YOU ARE GOING TO COME TO THEM
ASKING FOR ACCESS TO ANY
PARTICULAR NOVEL TECHNOLOGY OR
RESEARCH IN GENERAL.
>>THANK YOU SO MUCH, KOLB.
BY :
>>OF COURSE.
>>YOU ALL HAD A CHANCE TO
RECEIVE FEEDBACK RECEIVED ON
ISSUE OF NOVEL DATA TYPES
STARTING WITH RUPA. MAYBE YOU
CAN ALSO PROVIDE US WITH ONE OR
TWO THINGS IT THAT STOOD OUT TO
YOU MOST ABOUT THE FEEDBACK AND
YOUR REACTIONS AND SURPRISES AND
SO ON.
>>SURE. I WOULD BE HAPPY TO.
GOOD MORNING, EVERYONE.
SO, I'M RUPA VALDEZ AND AT
UNIVERSITY OF VIRGINIA AND
SPEAKING YOU TO AS COMMUNITY
ENGAGED RESEARCHER AND ONE WITH
MULTIPLE CHRONIC HEALTH
CONDITIONS AND POSITIONALITY AS
A RESEARCHER AND ALSO AS A
PATIENT AND I WANT TO REALLY
HIGHLIGHT THIS IDEA THAT
FEEDBACK THAT WE RECEIVE FROM
COMMUNITY CONVERSATIONS TO ME
RESONATES REALLY WITH WHAT I
HEAR WITHIN COMMUNITIES WITH
WHICH I WORK AND PUBLIC HOUSING
COMMUNITIES AND COMMUNITIES IN
RURAL APPALACHIA AND COMMUNITIES
THAT LIVE WITH DISABILITIES AS
WELL AND MUCH OF THE
CONVERSATIONS REALLY TO KOLBI'S
POINT AND BUILDING ON THAT POINT
ABOUT IS IT WORTH THIS
PARTICIPATION AND IS IT WORTH
THE ENGAGEMENT AND ARE RISKS OR
POTENTIAL RISKS OR POTENTIAL
UNINTENDED CONSEQUENCES OF
PARTICIPATION, DO THEY OUTWEIGH
THE BENEFITS AND EXCITING TO ME
TO SEE NIH AND CONVERSATIONS
BEING EXPLICITLY REALLY FOCUSED
ON THIS BALANCE AND TRYING TO
MAKE THE BALANCE GO IN FAVOR FOR
THE COMMUNITY AND WILLINGNESS TO
PARTICIPATE AND SEE VALUE IN THE
PARTICIPATION AND REFLECTION ON
THAT I SEE WAYS TO BUILD UPON
CONVERSATIONS WE ARE HAVING AND
IN TERMS OF DATA TYPES IT THAT
MAY BE POSSIBLE. CAN WE THINK
ABOUT DATA THAT IS RELATED MORE
EXPLICITLY TO EVEN SOCIAL
DETERMINANCE OF HEALTH AND
PEOPLE'S SOCIAL INTERACTIONS
KNOWING THAT INFLUENCES HEALTH
AND WELLBEING AND OUTSIDE OF THE
HOME WHAT DATA WE MIGHT COLLECT
ABOUT PEOPLE'S EVERY-DAY LIVES
AND TRANSPORTATION ACCESS AND
WHEN DO PEOPLE HAVE APPOINTMENTS
AND HOW LONG IT TAKES THEM TO
GET TO APPOINTMENTS FANNED THEY
ARE ON THE MOVE OR WAITING FOR A
BUTTS STOP FOR EXAMPLE OR FOR A
FAMILY MEMBER TO PICK THEM UP
AND ALL THESE CONVERSATIONS THAT
I HEAR WITHIN COMMUNITIES WITH
WHICH THEY WORK AND ONE POINT
RELATE TODAY THAT IN TERMS OF
THINKING ABOUT WHAT
INTERVENTIONS MIGHT LOOK LIKE
AND FOCUS OF THINKING ABOUT
PREDICTIVE ALGORITHMS AND EARLY
DIAGNOSIS AND HOW DATA TYPES
INFORM SYSTEMIC CHANGE AND
DIFFERENT POLICIES SO WE ARE NOT
FOCUSED ON EARLY DIAGNOSIS FOR
EXAMPLE THAT IS SO IMPORTANT AND
ON ACTUALLY CHANGING STRUCTURES
WITH WHICH THESE COMMUNITIES
LIVE.
>>THANK YOU SO MUCH, RUPA.
>>THANK YOU FOR HAVING ME. I'M
COMING FROM PENN STATE
UNIVERSITY AND HAVE THE
PRIVILEGE OF WORKING WITH EARLY
ON RESEARCH PROGRAM AND GUYS
INGER'S MY COMMUNITY HEALTH
INITIATIVE AND TRAINED AS AN
ANTHROPOLOGIST IS PERSPECTIVE I
BRING HERE AS WELL AS BEING
TRAINED AS AN ATTORNEY.
SOMETIMES I WEAR DIFFERENT HATS
WHEN I APPROACH THESE TYPES OF
TOPICS AND THOUGHT THIS WORK WAS
VERY WELL DONE WAS MY FIRST
IMPRESSION AND I'M SO HAPPY THIS
WORK WAS TAKEN ON. THE
ENGAGEMENT AND UNDERSTANDING
COMMUNITIES IS SO TREMENDOUSLY
IMPORTANT IN EVERYTHING IT THAT
WE DO. IT OFTEN IS KIND OF LEFT
AS AN AFTER THOUGHT OR AS AN
ALSO OR BUDGET ADD-ON INSTEAD OF
BEING SEEN AS CRITICAL AND
ESSENTIAL SUCCESS TO THAT WORK
AS WE DO IT.
IN TERMS OF HIGH-LEVEL
IMPRESSIONS THAT I GOT, LOTS OF
THESE TOPICS RESONATED WITH ME
THEMES THAT EMERGE THE FROM
THESE CONVERSATIONS AND I DON'T
WANT TO SAY TOO MUCH RIGHT NOW.
I WILL JUST SAY, YOU KNOW, THESE
ISSUES OF TRANSPARENCY CERTAINLY
IT IS SOMETHING THAT I HAVE
HEARD IN MY OWN WORK WITH FOCUS
GROUPS IN RURAL AND CENTRAL
PENNSYLVANIA.
AND JUST WANTING US TO DO MORE
ABOUT THE DETAILS; RIGHT?
SO, THE USE OF VIGNETTE OR CASE
STUDIES I THOUGHT WAS
PARTICULARLY USEFUL AND WE HEARD
HOW THOSE PERSONAL DETAILS GET
IMBEDDED INTO VIGNETTE EVEN IF
THEY WERE NOT THERE IN THE FIRST
PLACE.
I THINK THAT LOTS OF THE TIMES
WE MAYBE MISINTERPRET OR
OVERINTERPRET INFORMATION THAT
WE GET WITHOUT REALIZING GAPS
THAT ARE IN QUESTIONS WE ARE
ASKING AND IN CONVERSATIONS WE
ARE POSING THAT INDIVIDUALS THEN
WILL FILL IN WITH THEIR OWN
PERCEPTIONS OF WHAT IS HAPPENING
OR IMAGINATION OF WHAT THEY WANT
TO HAVE HAPPEN AND SO REALLY
TAKING THE TIME TO GET AT THOSE
DETAILS AND UNDERSTAND THAT
NUANCE, I THINK, IS JUST
TREMENDOUSLY KEY AND IS NOT
QUICKLY OR CHEAPLY DONE AND
TAKES LONG-TERM RELATIONSHIPS.
I'M SURE WE WILL GET INTO
DETAILS OF THE QUESTIONS AND I
WILL LEAVE REMARKS AT THAT.
>>THANK YOU SO MUCH, JEN. I
LOVE THAT QUOTE AND LET'S DO
MORE ABOUT THE DETAILS.
I LOVE THAT. AARON?
>>THANK YOU. AARON AND CEO OF
FITABASE AND ALSO VERY HAPPY TO
BE HERE. I ALSO WAS REALLY
PLEASED TO SEE LOTS OF THE
THEMES EMERGE FROM THIS WORK.
SO, MY CONTEXT FOR TALKING TO
YOU TODAY IS THAT 11 YEARS AGO I
STARTED A COMPANY FITABASE TO
HELP RESEARCHERS BETTER UTILIZE
CONSUMER WEARABLES AS PART OF
THEIR STUDIES AND FORTUNATE THAT
THE COMPANY HAS GROWN AND WE
HAVE BEEN ABLE TO HELP 1,500
RESEARCH PROJECTS TO DATE WITH
TOOLS THAT DEIDENTIFY DATA SETS
AND COLLECTING THAT DATA MAKING
IT SIMPLE AND VERY EASY TO DO
AND ALTHOUGH WE DON'T RUN OUR
OWN STUDIES, BECAUSE WE ARE SO
INVOLVED IN LOT OF CUTTING EDGE
THINKING AND IN THIS SPACE, WE
ASK TO BE PART OF THE DISCUSSION
ON HOW WE CAN DO THIS, YOU KNOW,
A LITTLE BIT PUSHING THE
ENVELOPE CAN WE DO THIS WITHOUT
SORT OF HAVING R & B ISSUES AND
WHAT ARE SORT OF TECHNOLOGICAL
WAYS TO CONVINCE IRB TO DO THAT
IS SAFE TO DO AND COMMUNICATE
THAT EFFECTIVELY AND HAPPY TO
SHARE THAT PERSPECTIVE AND
CONVERSATIONS WE HAD OVER THE
YEARS AND THINK LOTS OF THE
THINKING IN THIS REPORT MIRRORS
MANY CONCERNS WE HEAR OFTEN AND
I HOPE THAT AS PART OF THIS
CONVERSATION, HOPEFULLY WHAT
COMES OUT OF IT IS NOT MAYBE HEY
WE NEED TO BE ALWAYS SO GUARDED
AND SUPER CAREFUL AND MAYBE
GETTING INTO DETAILS AS YOU SAID
AND WE CAN GIVE RESEARCHERS MORE
CONFIDENCE IF THEY CAN SORT OF
PUSH BOUNDARIES AND I THOUGHT
ABOUT THIS OVER THE WEEKEND IN
READING MORE THEMES IS, YOU
KNOW, IN INDUSTRY, LOTS OF THE
PRIVACY CONCERNS AND A LOT OF
ALLOWANCES ARE KIND OF DEFAULT
ON YOU KNOW OUR SOCIAL NETWORK
POSTS ARE BEING MINE THE FOR
SENTIMENT ANALYSIS AND NEXT TO
BE SHOWN YOU TO ON YOUR FEED
HAVING TO DO WITH THE WAY IN
WHICH IT HAS EXPONENTIALLY BLOWN
UP IN THE LAST HOUR AND YOUR
INTERACTIONS AS PART OF THAT AND
RESEARCH DEFAULTED OFF AND I
DON'T KNOW IF I WANT TO APPROACH
THAT AND COME UP TO THAT LINE
BECAUSE IT IS, YOU KNOW,
POTENTIALLY HAS A LITTLE GRAY
AREA THAT IS A LOT OF WORK AND
HOPE IS THINKING THROUGH THAT
AND SOME OF THE THEMES THAT WE
EMERGE WITH THE ABILITY TO GIVE
RESEARCH MORE TOOLS AND
CONFIDENCE TO KIND OF APPROACH
THAT LINE AS WELL.
>>THANKS SO MUCH, AARON.
REALLY, REALLY HELPFUL TO HEAR
YOUR INITIAL REACTIONS.
I WOULD LIKE TO DIVE A LITTLE
BIT DEEPER INTO -- INTO SOME
ISSUES WE HEARD ABOUT RELATED TO
TRANSPARENCY AND
TRUSTWORTHINESS. I THINK ONE OF
THE -- JEN, YOU BROUGHT THIS UP
AND OTHERS TOUCH ON IT AS WELL.
ONE THING THAT AS I WAS
REVIEWING FEEDBACK, I WAS SORT
OF THINKING ABOUT, WELL, WHAT
ARE WE HEARING THAT PEOPLE WANT;
RIGHT?
THEY ARE SORT OF WHAT THEY DON'T
WANT AND WHEN WE THINK ABOUT
WHAT THEY WANT ARE SOME THINGS
THAT CERTAINLY STOOD OUT FOR ME
WERE GREATER TRANSPARENCY.
AND GREATER TRUSTWORTHINESS OF
PEOPLE THAT ARE HANDLING AND
MANAGING AND WORKING WITH
PERSONAL HEALTH DATA.
AND I'M CURIOUS HOW, KIND OF
GOING A LITTLE DEEPER, HOW THIS
THEME OF WHAT PEOPLE WANT MAY BE
SPECIFICALLY FOCUSED ON
TRANSPARENCY AND TRUSTWORTHINESS
AND HOW IT RESONATES WITH YOU AS
WELL AS WHAT YOU THINK STEPS ARE
THAT WE COULD THINK ABOUT TAKING
OR RESEARCH ENTERPRISE COULD
THINK ABOUT TAKING TO SORT OF
MAYBE BEGIN TO DELIVER ON THESE
THEMES A BIT MORE.
AND SO I WILL GO AHEAD AND START
WITH JEN. I WANT TO HEAR FROM
ALL OF YOU.
>>YEAH. TRANSPARENCY IS
SOMETHING THAT HAS COME UP QUITE
A BIT IN MY WORK AT GUYS INGER
AND PENN STATE AS WELL. I
THINK, AGAIN, IT COMES DOWN TO
WHAT EXACTLY ARE WE TALKING
ABOUT?
IT IS USEFUL TO TELL PEOPLE,
OKAY. HERE IS DATA THAT WE ARE
COLLECTING OR DATA WE ARE USING
OR DATA WE ARE SHARING OR HOW WE
ARE DOING THAT AND RESEARCH
PROJECTS THAT THEY ARE INVOLVED
AND RESEARCHERS IT THAT ARE
LEADING RESEARCH PROJECTS AND
NEED TO MEET PEOPLE WHERE THEY
ARE WHEN THEY SAY THEY WANT
TRANSPARENCY DOESN'T NECESSARILY
TRANSLATE INTO THEM SAYING WE
WANT EVERY DETAIL ABOUT THIS
ENDEAVOR NOW AND FOREVERMORE;
RIGHT?
SOMETIMES THAT DATA DUMP OR
INFORMATION DUMP BURIES THE
LEAGUE AND DOESN'T REALLY HELP
THEM OR SATISFY THAT INTEREST
THAT THEY HAVE. SO, WHEN I SAY,
YOU KNOW, WE NEED TO DO HARD
WORK AND TIME CONSUMING WORK OF
UNDERSTANDING THOSE DETAILS IS
ACTUALLY WELL WHAT ARE THEY
ACTUALLY LOOKING FOR?
WHAT DO THEY ACTUALLY -- THE
INFORMATION THEY WANT AND NEED
TO MAKE DECISIONS ABOUT WHETHER
THEY SUPPORT A PARTICULAR EFFORT
OR NOT AND ALSO THE MAGNITUDE OF
THAT SUPPORT OR OPPOSITION AND I
HAVE ONGOING UNPUBLISHED WORK
THAT NOW I'M FEELING QUITE
MOTIVATED TO PUBLISH THIS DATA
ON AND THINKING ABOUT THE
QUESTION WHAT IS HEALTH RESEARCH
WHEN WE AS EXPERTS IN THE ROOM
TALK ABOUT HEALTH RESEARCHES
COULD BE A MUCH BROADER ENDEAVOR
THAN SOMEONE NOT ENGAGED IN THIS
AS A PROFESSION IS THINKING
ABOUT AND I HAVE CONCERNS ABOUT
TYPES OF DATA THAT WE WILL GET
INTO LATER AND IN TERMS OF
TANGIBLE STEPS WE CAN TAKE, I
REALLY DO THINK IT IS DIGGING A
LITTLE DEEPER AND WHAT WE MEAN
ABOUT TRANSPARENCY AND HOW WE GO
ABOUT THAT AND AMOUNT OF
INFORMATION IS NOT NECESSARILY
THE SOLUTION.
>>ABSOLUTELY. THANKS SO MUCH.
ANY OF YOU?
ANY THAT WOULD LIKE TO CHIME IN?
>>I CAN GO. SO, I REALIZED
THAT I DID NOT GIVE THE CONTEXT
OF WHERE I -- MY LENS IN THIS
WORK.
SO, DEFINITELY FROM A COMMUNITY
ENGAGEMENT PERSPECTIVE HAVING
WORKED ON ALL OF US PROGRAM FOR
FIVE YEARS DIRECTLY DOG OUTREACH
AND IMPROVEMENT AND SERVING ON
GREATER HARLEM CHAMBER OF
COMMERCE IN COVID-19 PROGRAM TO
ADDRESS LOW VACCINATION RATES
AND SETTING THAT IN TERMS OF
WHERE MY LENS COMES FROM SOME OF
THIS WORK AND TO YOUR QUESTION
ABOUT AND IN TERMS WHAT PEOPLE
WANT AND THINKING ABOUT WHAT JEN
JUST SAID. WHEN I THINK ABOUT
THIS QUESTION OF
TRUSTWORTHINESS, ONE, THERE
NEEDS TO BE ADDITIONAL COMMUNITY
ENGAGEMENT TO DEFINE WHAT THAT
ACTUALLY MEANS FOR PEOPLE.
IT IS -- IT IS VERY, VERY
COMPLICATED.
YOU KNOW ON SOME LEVEL OF
THINKING ABOUT THE FACT THAT WE
HAVE A CONSENT PROCESS AND ON
SOME LEVEL THIS IDEA SOMEWHERE
THAT IS NOT OUR TRUSTWORTHY
PROCESS AND WHEN YOU ARE CLEARLY
TALKING AND ENGAGING WITH
COMMUNITIES IT IS NOT ENOUGH.
MY INITIAL THOUGHT IS REALLY
GOING BACK TO COMMUNITIES IN A
DEEPER DIVE TO ASK WHAT
TRUSTWORTHINESS WOULD LOOK LIKE
FOR THEM IS REALLY IMPORTANT.
I TOTALLY AGREE WITH JEN IN
TERMS OF TRANSPARENCY IS NOT
THIS JUMP OF DATA THAT CAN
CONFUSE PEOPLE AND MIGHT EVEN BE
AREAS THAT THEY ARE NOT REALLY
CONCERNED ABOUT.
YOU HAVE TO GOO BACK TO THE
FIRST QUESTION HOW WE DEFINE
TRUSTWORTHINESS AND WHAT IT
LOOKS LIKE IN YOUR COMMUNITY.
I THINK WE CAN START TO MOVE TO
ANOTHER POSITIVE STEP.
>>I LOVE THAT IDEA ABOUT DIVING
DEEPER INTO, YOU KNOW, WHAT DO
PEOPLE MEAN WHEN THEY SAY
TRUSTWORTHY; RIGHT?
UNDOUBT THELY IT MEANS DIFFERENT
THINGS TO DIFFERENT PEOPLE;
RIGHT?
RUPA?
>>I APPRECIATE BOTH YOUR POINTS
AND THINK ABOUT IT AS TWO
COMPONENT WUNZ AS AGENCY FROM
COMMUNITY AND DEMYSTIFICATION.
I THINK THAT THE AGENCY PART OF
THE TRUSTWORTHINESS IS STARTING
EARLY ON IN RESEARCH PROCESS AND
WHAT TYPES OF QUESTIONS ARE
BEING ASKED IN RESEARCH AND
TRUST FROM COMMUNITIES IN
QUESTIONS WE ARE ASKING THAT ARE
QUESTIONS THAT MATTER TO THEM
AND TRUSTWORTHINESS STARTS
REALLY AT THE BEGINNING AND
ECHOING THIS POINT ABOUT WHAT IT
MEANS TO DEMYSTIFY THE BLACK BOX
AND EVERYTHING FROM WHAT TYPE OF
DATA WE ARE COLLECTING AND WHY
AND QUESTION COMES FROM
COMMUNITY AND WHY BECOMES MUCH
CLEAR AND WHAT IS HAPPENING WITH
DATA AND WHAT ARE RESULTS AND
ACTIONS BEING TAKEN BASED ON
THAT AND LAST PART OF THE CHAIN
IS IMPORTANT IN TERMS OF
TRUSTWORTHINESS AND BACK TO THE
IDEA OF VALUE FOR THE COMMUNITY
UNDERSTANDING FROM A COMMUNITY
PERSPECTIVE WHAT IS CHANGING
BASED ON MY PARTICIPATION IN
THIS RESEARCH.
I LIVE IN SAN DIEGO THIS WEEKEND
IT RAINED LIKE CRAZY EVERYBODY
TOOK THEIR KIDS TO THE SCIENCE
MUSEUM. WE HAD NO PLACE ELSE TO
TAKE THEM. WE WAITED IN A HUGE
LINE FOR ONE OF THE THINGS. A
GROUP OF STUDENTS RIGHT THERE
WEARING UC SAN DIEGO SHIRTS AND
LIKE DO YOU WANT TO BE PART OF
OUR RESEARCH STUDY WE NEED 5 TO
8 YEAR OLDS. I HAVE AN 8 YEAR
OLD. WE OF COURSE SAID SURE.
WE WALKED UP TO THEM. ONE-PAGE
CONSENT FORM AND WE -- I WENT TO
UCSD AND MY WIFE WORKED ON
CAMPUS FOR BETTER PART OF A
DECADE AND VERY MUCH FELT
COMFORTABLE WITH IT UNDERGRAD OR
GRADUATE STUDENTS EXPLAIN THE
OPTIONALLY WE COULD VIDEOTAPE
AND THEY WERE GOING TO DO
EXPERIMENT LOOKING AT DIFFERENT
PERSONALITY TRAITS WITHIN OUR
CHILD. YOU KNOW, WE -- WE AT
THE END WOULD GET A STICKER OR
SOMETHING; RIGHT?
THEY WOULD BASICALLY VIDEO TAPE
FROM HERE DOWN AND WOULDN'T BE
ANY SORT OF USE OF OUR KID'S
FACES JUST FOR [INDISCERNIBLE].
IT WAS AN ENJOYABLE EXPERIENCE
WE LEARNED OUR KID IS VERY
HIGH-RISK AVERSE AND SHE
EXHIBITS HIGH TRAITS FOR DELAYED
GRATIFICATION. SO, SHE WILL
POSTPONE GETTING SOMETHING NOW
FOR SOMETHING LATER AND THOUGHT
IT WAS A GREAT METAPHOR FOR
EVERYTHING WE ARE TALKING ABOUT
MEETING US EXACTLY WHERE WE
WERE. AS PARENTS OBVIOUSLY WITH
AN INVESTMENT IN WANTING TO
UNDERSTAND OUR KIDS BETTER AND
GOT IMMEDIATE RESULTS FROM IT
AND ENGAGED AND HAD BENEFIT FROM
BEING PART OF THIS STUDY AND WE
WERE WITHOUT SOMETHING TO DO AND
HAD HIGH TRUST FOR KIDS RUNNING
THIS STUDY AND YOU KNOW WE WR
SORT OF ABLE TO SORT OF PICK AND
CHOOSE THE VARIED SORT OF WAYS
IN WHICH WE WERE ABLE TO
CONTRIBUTE DATA TO THE STUDY AND
OPTIONALLY CHECK BOX TO BE PART
OF FUTURE STUDIES WHICH WE DID
DO. I THINK THAT MIRRORS LOTS
OF WHAT WE ARE TALKING ABOUT
HERE AND THAT IS EXACTLY AND I
WAS SO IMPRESSED AND EXACTLY THE
MODEL WE HAVE TO KEEP IN MIND
FOR EVERYTHING.
>>THANKS SO MUCH. I THINK LOT
OF CRITICAL POINTS BEING RAISE
THE ABOUT TRANSPARENCY AND
TRUSTWORTHINESS IN THE RESEARCH
ENTERPRISE; RIGHT?
I WANT TO JUST FOLLOW UP THIS
IDEA WITH YOU ALL FOR A MOMENT.
IN ELATION TO THE TOPIC OF THIS
PANEL; RIGHT?
HERE, WE ARE TALKING ABOUT THIS
ISSUE OF USE OF NOVEL DATA TYPES
GENERATED OUTSIDE OF THE HEALTH
CARE SYSTEM AND OUTSIDE OF
TRADITIONAL HEALTH -- THIS SPACE
OF INDUSTRY IT IS INDUSTRY BUT
FORUMS LIKE SOCIAL MEDIA AND SO
ON AND SO FORTH.
I -- JUST FOR A MOMENT I WANT
TODAY PROBE DEEPER AND SEE IF --
IF YOU ANY -- IF ANY WOULD ADD
MORE TO YOUR REMARKS IF YOU
WOULD THINK ABOUT ISSUES OF
TRANSPARENCY AND TRUSTWORTHINESS
PARTICULARLY AS THEY RELATE TO
THINGS SORT OF OUTSIDE OF OUR
TRADITIONAL RESEARCH STRUCTURES.
>>I CAN GO FIRST. SO, IT IS AN
INTERESTING QUESTION; RIGHT?
I GOT MY START IN ACADEMIC
RESEARCH ON DIRECT TO CONSUMER
GENETIC ANCESTRY TESTING A NOVEL
TYPE OF DATA AND NOVEL TYPE OF
ENDEAVOR OUTSIDE OF THE
TRADITIONAL CLINICAL SETTING
THAT RAISE THE LOTS OF QUESTIONS
AND WAS 20 YEARS AGO. HOW FAR
WE HAVE COME YET STILL STAYED IN
THE SAME PLACE AND I WORRY ABOUT
FIXATION ON NEW DATA TYPES AND I
WORRY ABOUT OUR FIXATION ON
TRADITIONAL CLINICAL CARE
SETTING AND THINK WE NEED TO
MOVE FORWARD AND THINK ABOUT THE
FUTURE AND, YOU KNOW, NO THE TO
SOUND CLICHE BUT FUTURE IS HERE
WHETHER OUR FRAMEWORKS FOR
DEALING WITH THAT ARE ADAPTED TO
THAT OR NOT.
SO, I THINK THAT WE CAN DO
OURSELVES A DISSERVICE BY
FOCUSING ON TYPES OF DATA AND
TRADITIONAL CLINICAL CARE
CONTEXT.
I THINK IT IS MORE ALIGNED WITH
WHAT EXACTLY ARE WE DOING WITH
THOSE DATA?
WHAT WE SAY WE WILL DO. WHAT WE
ARE ACTUALLY DOING AND RISK OF
HARM THAT COMES FROM THAT. AND
MAKING SURE WE HAVE PROCEDURES
IN PLACE TO MAKE SURE THEY ARE
ADEQUATE REMEDIES WHEN THINGS GO
WRONG AND WE HAVE ADEQUATE
OVERSIGHT TO MAKE SURE PEOPLE DO
WHAT THEY PROMISED THEY WILL DO
WITH THOSE DATA. FOR ME, I
THINK WE NEED A RECALIBRATION.
THAT IS, PERHAPS, A PERSPECTIVE
THAT IS DRIVEN BY ME BEING IN A
MULTI-DISCIPLINARY SPACE AND I
NEVER FELT SQUARELY IN
DISCIPLINE OR ANY WORK SQUARELY
IN ONE SPACE AND THINK I FEEL
MORE COMFORTABLE WITH THAT GRAY
ZONE AND LACK OF DEFINITION.
AND KNOWING THAT IS EXACTLY
WHERE WE NEED TO BE KIND OF
PLAYING AND WORKING.
SO, I WOULD LIKE TO SEE US KIND
OF GO BEYOND THE TYPES.
I THINK THAT WE ARE SEEING THAT,
ALSO, BE A CONCEPT ADVANCED JUST
IN DATA PRIVACY AND DATA
PROTECTION AND LAW REFORM AS
WELL.
THIS MAYBE WE WILL GET INTO IT A
LITTLE LATER AND SECRECY
PARADIGM NOT WORKING FOR
INFORMATION PRIVACY IN ANY
CONTEXT LET ALONE HEALTH
RESEARCH SETTING AND ALSO
UNDERSTANDING, YOU KNOW, RISKS
THAT COME ALONG WITH DATA
VALENCE OF DATA POOR AND DATA
RICH AND HOW THAT MIGHT
EXACERBATE DISPARITIES.
>>THANK YOU. YEAH. I LOVE
YOUR PUSHBACK ABOUT KIND OF LIKE
THE FOCUS OF DATA TYPES.
I HAVE A COLLEAGUE FOR MANY
YEARS WHO IS A MENTOR OF MINE
THAT IS VERY FOND OF SAYING ALL
DATA ARE HEALTH DATA. THAT HAS
REALLY STUCK WITH ME OVER THE
YEARS, YOU KNOW, THAT ALL OF THE
DATA ABOUT US CAN POTENTIALLY
INFORM OUR HEALTH.
WHAT DOES IT MEAN FOR SOME OF
THE DISCUSSIONS WE ARE TRYING TO
HAVE HERE TODAY.
>>YOU SAW ME PUSH BACK EARLIER
IN MY CAREER ABOUT INFORMATION
OF GENOME GENOMIC INFORMATION IS
NOT ALWAYS HEALTH INFORMATION
CONTEXT IN TERMS DH YOU ARE
SETTING IT TO APPLY IT THAT
GIVES IT.
>>ABSOLUTELY. OTHER THOUGHTS?
>>OTHER THOUGHT IS THIS IDEA OF
TRANSPARENCY AND THINKING ABOUT
NEW DATA TYPES AND USING THAT
FRAMEWORK OR DATA TYPES WE HAVE
NOT BEEN USING IN RESEARCH FOR
-- WHEN I STARTED TO USE WORK IN
SOCIAL MEDIA DATA IT WAS EARLY
IN PROCESS OF USING THAT FOR
RESEARCH AND IN CONTEXT WORKING
WITH IRB THERE WAS LOTS OF
UNCERTAINTIES ABOUT WHAT WAS
ALLOWABLE OR NOT ALLOWABLE AND
RISKS TO PEOPLE PARTICIPATING,
THEY WERE REALLY UNCLEAR. WE
NEED TO BE VERY TRANSPARENT
ABOUT THAT AND WHAT DO WE
ACTUALLY KNOW ORE NOT KNOW ABOUT
RISKS AND FACT THERE IS RISK
INVOLVED THERE AND LET
INDIVIDUALS DECIDE FOR
THEMSELVES IF THEY ARE WILLING
TO TAKE ON THAT RISK AND
COMPLEMENT TO THAT THEN IS IF
THERE ARE UNINTENDED
CONSEQUENCES WHAT IS OUR
RESPONSIBILITY AS RESEARCHERS OR
RESEARCH COMMUNITY PARTICULARLY
TALKING ABOUT POPULATIONS
ALREADY FACING MANY MULTIPLE
AXIES OF MARGINALIZATION FOR
RISKS.
>>THANK YOU.
>>I WILL TAKE SLIGHTLY
CONTRARIAN VIEW AND IN TERMS OF
GETTING AWAY FROM THINKING ABOUT
DATA IN THAT WAY AND THINK IT IS
IMPORTANT TO STRATIFY IN TERMS
OF RISK AND IN WEIRABLES WORLD
SOMEBODY IS DAILY STEP COUNTS
ACROSS YEAR AND DEIDENTIFIED IS
A DIFFERENT PROPOSITION THAN
WHOLE GENOME AND THINK THAT
SOMETIMES PEOPLE GET STUCK
APPLYING HEALTH DATA MENTALITY
AND I HAVE ACTUALLY HAVE A FRONT
ROW SEAT TO THIS OVER THE YEARS
AND LAST DECADE WITH WEARABLES
AND WE FIRST STARTED OUT WITH
STEP COUNTING A BIT BRINGING IT
TO RESEARCH AND STEPS AND
CALORIES AND, YOU KNOW, NUMBER
OF MINUTES AND SLEEP. ONE
PIVOTAL MOMENT I WOULD SAY FOR
MY BUSINESS AND FOR WEARABLES
GENERALLY IS HOW TO CHARGE HR.
WE ALL OF A SUDDEN HAD ALL DAY
HEART RATE DATA FOR PEOPLE ON
THE RISK OF LITERALLY 24-HOUR
YEAR-LONG HEART RATE DATA SET
THAT OVERNIGHT BECAME SOMETHING
WE COULD HAVE; RIGHT?
CONVERSATIONS AROUND THAT, TO BE
HONEST, A COUPLE YEARS LATER,
BUSINESS DOUBLED FOR US IN TERMS
OF INTEREST OF CONSUMER
WEARABLES AND RESEARCH AND
CONVERSATIONS AROUND THAT WR
VERY INTERESTING AND WHAT DOES
THAT MEAN OR ALL DAY HEART RATE
DATA MEAN AND WHAT ARE
IMPLICATIONS OF THAT AND YOU
KNOW WE ARE NOW AT POINT GLUCOSE
WHAT DOES IT LOOK LIKE?
WE HAVE -- SO, SPECIFICITY, I
THINK, I GUESS RECOMMENDATIONS
FOR -- FOR FUTURE NIH IN THIS IS
YOU KNOW THERE ARE PROBABLY
THRESHOLDS FOR SPECIFICITY IN
WHAT RISK PROFILES AND SCENARIOS
FOR DIFFERENT DATA SETS ARE AND
SIMILAR THINGS WE HAVE TO ALSO
GET INTO WEEDS AND WORK HAS TO
BE DONE TO GIVE CONFIDENCE
THERE.
>>JUST ONE QUICK THOUGHT. SO,
JUST, YOU KNOW, THINKING ABOUT
RISK PROFILES AND EXAMPLE OF
DATA AND PUTTING COMMUNITY
ENGAGEMENT HAT ON I IMMEDIATELY
WENT TO THAT MIGHT NOT BE IN
THEORY AND IS LOWER ON RISK
SCALE AND BASED ON NOVEL
TECHNOLOGIES WE ARE TALKING
ABOUT AND HOW THINGS WILL BE
AGGREGATED TOGETHER FROM AN
INDIVIDUAL'S PERSPECTIVE THERE
IS A SENSE ANY OF ONE OF THOSE
CAN BE RISKY AND ONE PIECE YOU
STARTED WITH FITBIT DATA FOR
INSTANCE.
DOESN'T SEEM RELATIVELY HARMLESS
AND OTHER THINGS CAN NOW BE
CONNECTED THAT WILL GIVE A WHOLE
FULL PICTURE OF SOMEONE IN
THEORY WITH OR WITHOUT THEIR
FULL I SHOULDN'T SAY FULL
CONSENT BUT MAYBE THEY DON'T
REALIZE WHERE THEY ARE WITHIN
THAT PROCESS AND THINK IS IT A
QUOTE LOW RIFBLG IDEA OR
PROPOSITION VERSUS SOMETHING
HIGHER AND FOLKS IN ENGAGEMENT
AND RESEARCH SPACE HAVE
RESPONSIBILITY TO MAKE SURE
PEOPLE ARE FULLY INFORMED WHERE
THINGS CAN GO AND TO ME I LOOKED
AT DATA ALL HAVING POTENTIAL
RISK EVEN FITBIT SPACE.
THAT WAS MY ONLY THOUGHT ON
THAT.
>>THANK YOU.
SO, LET'S KIND OF LOOK AT, I
GUESS, A FLIPSIDE OF THE SAME
COIN AND THINK ABOUT FOR A
MOMENT WHAT WE HEARD RELATE
TODAY WHAT PEOPLE DON'T WANT
WHICH IS KIND OF THE OTHER SIDE
OF THIS; RIGHT?
WE HEARD CONCERNS ABOUT PRIVACY
AND SOME HAVE ELUDE TODAY THOSE
IN REMARKS ALREADY THIS MORNING
AND POTENTIAL FOR DATA TO BE
USED AGAINST NOT ONLY
INDIVIDUALS BUT COMMUNITIES AND,
YOU KNOW, IN PARTICULAR, THE
ISSUE OF USING PUBLIC DATA WITH
OR WITHOUT CONSENT AND WE HEARD
DATA PUBLIC WITH SOCIAL MEDIA
MANY PARTICIPANTS EXPRESSED THEY
STILL WANTED TO BE CONSENTED OR
AT LEAST NOTIFIED.
I'M CURIOUS TO HEAR ALL YOUR
REACTIONS TO SOME OF THE THINGS
WE HEARD THAT WE SHOULD BE
THINKING ABOUT HOW TO GUARD
AGAINST AND SOME CONCERNS
EXPRESS THE BY PARTICIPANTS.
AARON, WOULD YOU LIKE TO GO?
>>I DO AGREE PICKING UP FROM
LAST PART OF THE PANEL. DO I
AGREE WE DO KNOW THAT THERE IS A
SENTIMENT, YOU KNOW, THERE IS
RISK IN ALL DATA AND AGGREGATION
LEADS TO MORE QUESTIONS AND ONE
THING STRUCK OUT TO ME PEOPLE
DIDN'T WANT IS COMPANIES USING
DATA IN A WAY THAT WOULD BE
PROFITABLE FOR THEM OR TURN INTO
SOMETHING THAT THEY WEREN'T
PRIVY TO AS PART OF THE -- I
THINK OTHER THING THAT STOOD OUT
TO ME IN TERMS WHAT PEOPLE
DIDN'T WANT IS THEY DIDN'T WANT
TO REALLY ASSUME A LOT OF RISK
AND WEARABLE DATA BEING PART OF
AN INSURANCE POLICY ADJUSTMENT.
BUT, ONE OBSERVATION I HAD,
PEOPLE DO A RISK/REWARD
PROPOSITION AND THOUGHT OVER THE
WEEKEND WHERE I PERSONALLY WOULD
FEEL COMFORTABLE PUSHING MY
LIMITS GIVING UP PRIVACY AND
DON'T KNOW HOW MANY HAVE YOUNG
KIDS OR AELT YEAR OLDS ASKING
FOR TELEPHONE AND LOOKING AT
HORRIFIC RESEARCH AROUND
ESPECIALLY YOUNG WOMEN'S ACTS AS
TO SOCIAL NETWORKS AND BULLYING
AND BODY IMAGE AND ALL THOSE
THINGS AND LIKE I WILL HAVE TO
DEAL WITH THAT SOON.
THINKING THAT IF SOMEONE HAD A
STUDY SAYING WE NEED TO GIVE YOU
AN APP MONITORING ALL KIDS POSTS
AND FRIENDS POSTS AND NO WAY TO
DO THIS DEIDENTIFIED IN A WAY
THAT ISSINGFUL FOR YOU AND
SURFACE FOR YOU CONCERNS THERE
ARE BODY ISSUE LANGUAGE BEING
TALKED ABOUT AND BULLYING GOING
ON WE WILL SURFACE FRIEND'S
INTERACTIONS WITH YOU IS AN AREA
THAT PARENTS ARE STRUGGLING WITH
CONTROL OVER RIGHT NOW AND WOULD
PROBABLY LOOK AT THAT AND SAY,
YOU KNOW, RISK/REWARD
PROPOSITION THERE MAKES A LOT OF
SENSE TO ME. WHILE I DO
APPRECIATE WE HAVE ASKED PEOPLE
IN -- MY REACTION GENERALLY WE
ASKED PEOPLE WHAT THEY LIKE AND
DON'T LIKE AND THERE WILL BE
SCENARIOS WITH HENRY FORD QUOTE
PROBLEMS ASKING EVERYBODY WHAT
THEY WANTED BUILD A FASTER HO RS
AND THINK ALSO RESEARCH HAS
IMPORTANT PLACE TO BE
COUNTERBALANCING THE FORCES THAT
ARE BUILDING OUT TOOLS THAT ARE
COLLECTING THIS DATA, YOU KNOW,
WITHOUT ANY KIND OF REAL STOP
GAPS.
>>>>THANK YOU.
>>JUST A BRIEF COMMENT AND
THINK THIS QUESTION ABOUT WHAT
IS WHAT DATA OUR PUBLIC IS AN
INTERESTING ONE AND WHAT IS
MOTIVATION FOR SOMEBODY TO
ENGAGE IN THAT SPACE.
PARTICULAR HEALTH CONDITION OR
LIFE EXPERIENCE AND IDEA THEY
MIGHT NOT BE ENGAGING IN SPACE
OR RESEARCH TO BE USED IN THAT
WAY AND WHAT IS INTENTION
ENGAGING IN THAT SPACE IS
SOMETHING TO BE THOUGHTFUL ABOUT
THINKING WHAT IS PUBLIC AND
OTHER PART RELATED TO THAT IS IF
WE HAVE THINGS THAT DON'T
DEIDENTIFY HOW FAR DOES IT
DEIDENTIFY AND SOCIAL MEDIA
POSTS PUT INTO GOOGLE AND NOT
LINKS TODAY INDIVIDUAL OR CAN'T
BE LINKED BACK BY ANYONE EASILY
AND DOING SOCIAL MEDIA RESEARCH
NOW IT IS COMMON TO NOT ACTUALLY
PUT POSTS VERBATIM INTO RESEARCH
AND SUMMARIZE IT IN A WAY AND
AGAIN WHAT ARE BEST PRACTICES
FOR DOING THAT AND HOW ENSURE
THAT IS ACTUALLY HAPPENING IN
RESEARCH AND KNOW WHEN IT GOES
TO PEER REVIEW THAT NOT EVERY
POST IS BEING RIGHT LOOKED AT IT
TO MAKE SURE IT IS DEIDENTIFIED
IN THAT WAY.
>>SLOW DOWN HERE. NO. I WAS
-- JUST TWO THOUGHTS.
WHAT AARON SAID ABOUT
RISK/REWARD PROPOSITION, I THINK
IT IS SO IMPORTANT AND JUST
THINKING OF OTHER RESEARCH
PROJECTS I HAVE BEEN INVOLVED
IN. WHY DON'T -- AGAIN,
THINKING OF COMMUNITY
ENGAGEMENT, LET'S GO BEYOND FACT
THAT WE KNOW THAT IS A CONCERN
AND LET'S ENGAGE THE COMMUNITY
TO ACTUALLY ASK THEM WHAT IT
WOULD TAKE IN A POTENTIAL
SITUATION TO MOVE FORWARD.
WITH A PROJECT, FOR INSTANCE.
AND THE OTHER THING TOO ABOUT
THINKING ABOUT NOVEMBEREL
TECHNOLOGY YOU JUST MENTION BD
SOCIAL MEDIA THAT I THINK IS A
REALLY GREAT LENS TO LOOK AT
THINGS AND MOST OR LOTS OF NOVEL
TECHNOLOGIES DISCUSSING IN CASE
STUDIES, PEOPLE DIDN'T
PARTICIPATE IN THEM WITH AN IDEA
THAT WILL WAS GOING TO BE HEALTH
BENEFIT OR OUTCOME DOWN THE LINE
IF WE KNOW THAT ONUS
RESPONSIBILITY I WOULD SAY IS ON
US TO MAKE SURE WE ARE
EXPLAINING SPENDING THAT TIME TO
LET PEOPLE KNOW THERE IS A SHIFT
RIGHT NOW.
FACEBOOK CAN BE USED TO
POTENTIALLY HELP WITH YOUR
CARDIOVASCULAR DISEASE MANAGING
THAT AND THOUGHT IT WAS A
POWERFUL THING TO SAY. IT IS
NOT THE THOUGHT OF COMMUNITIES
FOR NOT RECOGNIZING THAT THIS IS
THE SPACE THAT WE ARE MOVING
INTO AND SYSTEMS WEREN'T
DESIGNED OR WEREN'T INFORMED
THAT IS WHERE THINGS WERE GOING
SO.
>>I HAVE A LOT OF DISJOINTEDED
THOUGHTS ABOUT COMMENTS YOU ALL
RAISED THAT ARE QUITE IMPORTANT
IN TERMS OF MY REACTION TO THE
IMPRESSION WHAT PEOPLE DON'T
WANT; RIGHT?
THERE IS A DRIVE FOR PRIVACY AND
PUBLIC AND THINK IT IS IMPORTANT
TO ACKNOWLEDGE THERE ARE PRIVACY
LAW SCHOLARS NOTING THAT TRYING
TO ADVOCATE FOR REASONABLE
EXPECTATION AND PRIVACY PUBLIC
AND SKINNER THOMPSON IS ONE OF
THEM AND CONVERSATIONS AND
ABILITY TO MAINTAIN PRIVACY
COMES FROM A PLACE OF PRIVILEGE
AND WE NEED TO THINK ABOUT THAT
AND HOW MARGINALIZED COMMUNITIES
DON'T OFTEN HAVE THAT CHOICE.
SO, YOU KNOW, WHEN I THINK ABOUT
PUBLIC DATA AND WHETHER WITH OR
WITHOUT CONSENT I'M COMING FROM
THIS HUMAN RIGHTS TO SCIENCE AND
HUMAN RIGHTS TO HEALTH AND
THINKING ABOUT WHAT ABOUT PEOPLE
WHO CAN'T SAY THEIR OPINIONS ON
THAT MATTER?
THAT IS ONE POINT.
RUPA, YOUR POINT ABOUT WHAT KIND
OF MOTIVATED THE ENGAGEMENT IN
THE FIRST PLACE LEADING TO DATA
IS SUPER IMPORTANT AND
EVERYTHING CONTEXTUALIZED AND
ENGAGING IN HEALTH RESEARCH, ONE
THING IMPORTANT TO NOTE IS
PEOPLE GENERALLY DO STILL HAVE A
VERY HIGH LEVEL OF TRUST IN
CLINICIANS AND HEALTH
RESEARCHERS THAT WE NEED TO
MAINTAIN THAT AND NOT JEOPARDIZE
THAT AND DOESN'T MEAN DON'T USE
NEW DEVICES OR WEARABLES AND
DON'T DO THAT KIND REEVE SEARCH
AND THINKING ABOUT WHAT IT MEANS
AND HOW WE CAN COLLECTIVELY DO
BETTER AND PUSH NON-HEALTH FOLKS
IN THAT DIRECTION AND FACIAL
ANALYTICS IS ONE EXAMPLE FOR
THAT AND USES FOR IT IN THE
HEALTH CARE SPACE AND OUTSIDE OF
THE HEALTH CARE SPACE AND DATA
AT END OF THE DAY IS DATA THAT
CAN HARM YOU AND THINKING ABOUT
WHAT LED TO DATA IS IMPORTANT
AND COMMENTS ABOUT REPORTING
STANDARDS REALLY ARE KEY TOO.
YOU KNOW, THAT IS SOMETHING I
HAVE HAD COME UP IN MY OWN WORK
WITH ETHICS OF SYNTHETIC DATA
AND THINKING ABOUT HOW TO
COMMUNICATE USE OF SYNTHETIC
DATA. THERE MIGHT BE
PERCEPTIONS BY NONDATA
SCIENTISTS THAT THIS IS FAKE
DATA AND WHAT ARE YOU TELLING ME
AND WHAT ARE YOU STUDYING?
SO, I THINK WE NEED TO BE
CAREFUL ABOUT THAT.
MY FINAL COMMENT NOW I WARNED
YOU THESE WERE DISJOINTED IS A
NOTION OF SOCIAL MEDIA. YOU
KNOW, OUR HEALTH IS A FUNCTION
OF US BEING NOT ONLY BIOLOGICAL
BEINGS BUT SOCIAL BEINGS.
WE SHOULDN'T BE SURPRISED THAT
HOW WE INTERACT WITH ONE ANOTHER
HAS IMPACT WITH HEALTH OR IS
HEALTH RELATED AND WE NEED TO
KEEP CONTEXTUAL INTEGRITY WHAT
DOES IT MEAN?
WE CAN HAVE MANY CONVERSATIONS,
AARON, ABOUT THE STEP COUNT AND
GEO LOCATION DATA AND ALL
THINGS.
I ACTUALLY THINK IT IS IMPORTANT
FOR US NOT TO KIND OF SEQUESTER
TECHNOLOGIES SAYING THIS IS
ACCEPTABLE VERSUS NOT ACCEPTABLE
AND IS MORE THERE ARE
RESPONSIBLE USES ALL AROUND.
HOW DO WE KIND OF DEFINE WHAT
PRACTICES MIGHT LOOK LIKE? IN
THAT CONTEXT OR WHATEVER CONTEXT
WE HAVE.
>>GREAT POINTS AND QUICKLY
BEFORE WE MOVE ON I WANT TO
REMIND ANYONE IN THE ROOM FEEL
FREE TO APPROACH MICROPHONE IF
YOU HAVE QUESTIONS ENCOURAGING
QUESTIONS AS WELL AS THOSE
TUNING IN PLEASE FEEL FREE TO
SUBMIT QUESTIONS AND COMMENTS.
ONE PERSON AT MICROPHONE AND
FOLLOWING UP QUICKLY ON ONE
THING AND WILL TURN IT OVER TO
YOU.
SO, JUST, I THINK THIS -- I
DON'T WANT TO LOSE TRACK OF THIS
POINT, RUPA, YOU FIRST BROUGHT
UP ABOUT AND THINK IS
PARTICULARLY RELEVANT FOR NOVEL
DATA TYPES THAT IS THE INTENTION
THAT PEOPLE ARE INTENTION WITH
WHICH PEOPLE ARE GENERATING
DATA, FOR EXAMPLE, ON SOCIAL
MEDIA. SORT OF LIKE I GO TO
SOCIAL MEDIA WITH THIS IN MIND,
YOU KNOW, NOT FOR THAT; RIGHT?
I WOULD BE CURIOUS TO JUST
PROMPT ALL PANELISTS TO THINK
ABOUT HOW DOES THAT
INTENTIONALITY AROUND NOVEMBEREL
DATA TYPES AND WHAT DOES IT MEAN
FOR HOW WE CREATE RESEARCH
POLICY AND I DON'T KNOW THERE IS
AN EASY ANSWER BUT JUST WANTED
TO PUT THAT OR PLANT THAT SEED.
WE MIGHT BE ABLE TO GET BACK TO
IT AT SOME POINT. DEVEN?
>>I COULD HAVE WAITED. IT IS
GOOD TO GET OUT OF THE CHAIR
PERIODICALLY. I'M DEVEN MCGRAW
AND LEAD FOR DATA STEWARDSHIP
AND DATA SHARING AT INVITAE.
ONE OF THE THINGS I SEE
FREQUENTLY THAT I THINK A NUMBER
OF YOU TOUCHED ON. GREAT PANEL,
BY THE WAY. THIS HAS BEEN
REALLY FASCINATING. ESPECIALLY
WHEN TALKING ABOUT DATA FROM
KIND OF NONTRADITIONAL SOURCES
YOU MIGHT BE ACCESSING FROM
RESEARCH PURPOSES FROM SOCIAL
MEDIA OR TRACKERS OR LOCATION
DATA AND WEARABLES AND I MEAN IT
IS REALLY -- YOU KNOW, ALL OF
THAT DATA CAN BE VERY STRUCKTIVE
FROM A RESEARCH PURPOSE. WHEN
THOSE TOOLS ARE UTILIZED EITHER
THEY -- YOU KNOW, THEY ARE
REALLY SUBJECT TO DATA SHARING
POLICIES OF THOSE PARTICULAR
TOOLS.
RIGHT?
I THINK WE KNOW THAT FOR MANY OF
THOSE COMPANIES SOMETIMES DATA
SHARING POLICIES ARE TRANSPARENT
AND DECENT AND SOMETIMES THEY
ARE NOT AND RESEARCH CONDUCTED
ON SOME TOOLS BY AND LARGE
MAJORITY ARE NOT TERRIBLY
TRANSPARENT OR HIDDEN IN TERMS
OF SERVICE AND WHERE -- HOW DO
-- HOW SHOULD WE APPROACH THAT
FROM A RESEARCH PERSPECTIVE?
SHOULD WE THINK ABOUT PEOPLE ARE
ALREADY USING THESE TOOLS AND
THEREFORE WE JUST -- THOSE RISKS
ARE OUTSIDE OF THE RESEARCH
RISKS THAT WE WILL, YOU KNOW,
ASK PEOPLE IF THEY ARE WILLING
TO TAKE ADVANTAGE OF HAVING DATA
THAT GETS COLLECTED THROUGH USE
OF TOOLS FOR RESEARCH PURPOSES
AND MESS GOING ON ON SIDE WITH
RESPECT TO HOW DATA IS SHARED IS
NOT OUR RESPONSIBILITY BUT WE
WILL TAKE IT AS A GIVEN OR DO WE
HAVE RESPONSIBILITY TO TRY TO
CREATE MORE TAILORED EXPERIENCES
THROUGH USE OF THE TOOLS BY
NEGOTIATING WITH THE AS PART OF
-- OPPOSED TO SAYING WE WILL
TAKE THIS OFF THE SHELF. WE
WILL TALK TO THIS FITNESS
TRACKER AND ASK IF WE CAN HAVE A
NOVEMBEREL EXPERIENCE FOR USERS
SO WE ARE NOT SUBJECTING THEM TO
ADDITIONAL RESEARCH RISK BY
ASKING THEM TO USE A TOOL AND
NOT NECESSARILY JUST DECIDING WE
WILL HANDLE RISKS BY DISCLOSING
THEM TO PEOPLE AND SAYING ARE
YOU WILLING TO ABSORB THIS RISK?
I'M CURIOUS ABOUT I THINK A
NUMBER OF YOU TOUCHED ON IT.
CURIOUS ABOUT YOUR THOUGHTS ON
THAT. THANK YOU.
>>THANKS FOR THE QUESTION.
GREAT QUESTION.
>>I HAVE A THOUGHT ON THAT.
THANKS SO MUCH FOR THE QUESTION.
I THINK THAT IN RESEARCH WE
SHOULD ABSOLUTELY HAVE A
RESPONSIBILITY TO HAVE
CONVERSATIONS WITH OTHER
NEFARIOUS ACTORS MAYBE THAT IS A
LITTLE STRONG. ABSOLUTELY.
I THINK REASON WHY IS BECAUSE
COMMUNITIES WHEN THEY ARE IRON
KALILY IT IS REALLY INTERESTING
IN CONVENINGS TO HEAR HOW MANY
PEOPLE ARE WILLING TO PROVIDE
DATA TO SOMETHING THAT SEEMS
SMALL AND FOR FITBIT OR SOME
OTHER WEARABLE OR SOMETHING CAME
UP IN ONE CONVERSATION ABOUT
APPLE CONSENT RIGHT ON THEIR
PHONE. WHEN YOU TIE IT TO
RESEARCH SUDDENLY FOR SOME
REASON IT CLICKS WITH PEOPLE I
THINK HOW LARGE AND HOW LARGE
AND IMPORTANT AND
INCONSEQUENTIAL THAT
PARTICIPATION IN A POTENTIAL
PROJECT IS.
I THINK FOR RESEARCH ENTERPRISE
LONG TERM AS YOU CONTINUE TO
WANT PEOPLE TO BE INVESTED AND
TRUST THE SYSTEM IF NOT HANDLED
OR MANAGED IN ANY WAY BASED ON
MY CONVERSATIONS IT ALL GETS
MUDDLED AND RESEARCHERS AND
PEOPLE TRYING TO DO REALLY GREAT
WORK IS SWEPT UP INTO THAT. IF
THERE IS NO SORT OF PUSHBACK, IF
YOU WILL, ON THAT SORT OF
BEHAVIOR I THINK THAT WILL
REMAIN, YOU KNOW, 10 YEARS OR 15
YEARS FROM NOW TRYING TO FIGURE
OUT WHY PEOPLE DON'T WANT TO
ENGAGE IN RESEARCH.
SO, TO ME, I THINK THAT LIKE
100% IS GETTING READY TO JUMP
OUT OF MY SEAT AND YES. LATTER
PART OF WHAT YOU SAID MAKES SO
MUCH SENSE IN WHAT SHOULD BE
DONE.
>>OTHER COMMENTS?
>>I LOVE THE QUESTION. I THINK
IT IS PART QUESTION AND ACTUALLY
CALL TO ACTION.
AND WHICH I DEFINITELY RESONATE
WITH.
FIRST PART, I THINK, YOU KNOW,
MORE AND MORE WE ARE HOLDING
COMPANIES AND CERTAIN COMPANIES
ACCOUNTABLE TO REALLY DISCLOSE
TRANSPARENT WILL I TO PRIVACY
POLICIES AND FITABASE RESEARCH
STUDY HOOER AND WEIGHT WE WERE
COLLECTING DATA FROM FACEBOOK
AND WORKING WITH THEM AND
LOOKING AT THEIR POLICIES AS
WELL AND WATCHING SORT OF WHAT
THEY PROGRESSED OVER THE YEARS
IS I THINK AN EXAMPLE WHAT WE
ARE TRYING TO AVOID AND DID THAT
AND WE NAVIGATED THE ROUGH
WATERS AS BEST AS WE COULD. I'M
PRETTY PLEASED WITH TRANSPARENCY
WITH WEARABLES AND PRIVACY HAS
GOTTEN CLEAR AND INTERNAL
PRACTICES HAVE OPENED UP OVER
THE YEARS AND THINK THAT THE
SECOND PART WHAT YOU ASKED IS
SORT OF ROOET SEARCH
CONVERSATION AND RESEARCH
ENGAGEMENT WITH PEOPLE WEARING A
WEARABLE OR DEVICE AND 100%
THINK THIS IS THE AREA WHICH
MOST AMOUNT OF BLUE SKY EXISTS
FOR ADDITIONAL WORK AND IN FACT
AS A COMPANY WE INVESTED IN IT
SIGNIFICANTLY AND COMPANY
FITABASE ENGAGE AND LUCKY TO
WORK WITH REALLY GREAT
RESEARCHERS AND WITH PERMISSION
I TEST STUDIES AND ONE NOW IS
ASKING AFTER EVERY EXERCISE
EVENT TO REFLECT GIVING 1
THROUGH 5 RESPONSE AS TO REF
REFLECTING ON EXERCISE YOU DID
HOW DO YOU FEEL AND CAN YOU USE
REFLECTION AS A WAY TO THINK
ABOUT WHEN YOU MIGHT EXERCISE
AGAIN. THERE ARE REALLY
IMPORTANT METHOD-BASED RESEARCH
MISSING FROM THE CONVERSATION
WITH PEOPLE CREATING DATA
INTENTIONALLY OR AS AN EXHAUST
WHEN WEARING APPLE WATCH. I
WANT TO GET NOTIFICATION AND AS
AN EXHAUST OF THAT I AM GETTING
ALL THIS. CONVERSATION THERE IS
I THINK REALLY IMPORTANT FOR US
TO THINK ABOUT HOW WE CAN JOIN
UP WITH THAT. VERY MUCH I THINK
WHERE PEOPLE AND RESPONSES DON'T
NECESSARILY GIVE US THAT.
THEY DON'T KNOW WHAT TO ASK FOR
AND IS THE CALL TO ACTION FROM
ALL THIS.
>>YEAH. DEVEN, FANTASTIC
QUESTION. I'M A BIT MORE
CONCERNED ABOUT DATA PRACTICES
THAN DATA POLICIES AT END OF THE
DAY WHICH IS A REASON I AM AT
PENN STATE. I WANT TO GET
ENGINEERS WHEN BUILDING
TECHNOLOGIES SO THEY THINK COMB
THESE ISSUES NOW NOT LATER WHEN
A LEGAL DEPARTMENT TELLS THEM
THEY HAVE TO THINK ABOUT IT OR
IRB TELLS THEM THEY HAVE TO
THINK ABOUT IT. PRA YOUR
SUGGESTION THAT HEALTH
ORGANIZATIONS AND THINKING ABOUT
IN WEARABLE SPACE AND ALSO IS
IMPORTANT IN THE GENOMIC SPACE,
YOU KNOW, IN THINKING ABOUT HOW
WE CAN USHER IN SOCIAL NORMS
THAT ARE MAYBE NOT LEGALLY
MANDATED AND GENETIC
DISCRIMINATION AND BIG HEALTH
SYSTEMS WITH VENDORS AND THEY
WOULD NEGOTIATE CLAUSES SAYING
THAT YOU KNOW OTHERS WON'T USE
THAT INFORMATION IN
DISCRIMINATORY WAYS AND THAT
COULD USHER IN CHANGE IN
EXPECTATIONS TO DO BETTER.
I THINK THAT ONE OF THE THINGS
THAT FRUSTRATED ME AND CONTINUES
TO FRUSTRATE ME IS A DISCONNECT
OF WHAT WE ARE TRYING TO MANDATE
IN THE RESEARCH SPACE AND WHAT
WE TOLERATE IN THE REAL WORLD;
RIGHT?
I'M A LITTLE CONCERNED ABOUT US
IMPOSING TOO MANY STEPS AND TOO
MANY OBLIGATIONS ON RESEARCHERS
AND WANTING TO UNDERSTAND A
SITUATION OR HOW THINGS WORK OR
A PARTICULAR TOPIC THAT I THINK
THAT DETOURANT EFFECT WILL HURT
ALL OF US IN THE LONG RUN AND
WOULD RATHER US THINK ABOUT HOW
WE CAN BE MORE MINDFUL IN
ADVANCING BETTER PRACTICES IN
OTHER SPACES; RIGHT?
ON CONSENT ISSUE AND YES TO
TECHNOLOGIES AND IN CONSUMER
SPACE TO WANT A FRICTIONLESS
EXPERIENCE AND GET ME TO THE
THING AND DEVICE AND TO WHATEVER
ACTION THIS IS SUPPOSED TO GIVE
ME AND YES WHATEVER YOUR TERMS
ARE YES, YES, YES, YES, YES
DON'T READ IT AND IN HEALTH
RESEARCH SPACE IS LET'S GO
THROUGH THE CONSENT FORM AND ASK
YOU TEACH-BACK QUESTIONS TO MAKE
SURE YOU UNDERSTAND AND THINK
ABOUT THIS AND WE ARE IMPOSING
FRICTION OR IT INGRESS TO GET
PEOPLE TO PAUSE AND THINK ABOUT
IT. FOR ME, I'M TRYING TO THINK
ABOUT HOW WE ALIGN AND, AGAIN,
BREAK DOWN A BARRIER OF CLINICAL
VERSUS NONCLINICAL SETTING AND
GETTING REASONABLE PRACTICES
ACROSS BOARD IN DATIFIED CULTURE
WE ARE IN.
>>MAYBE DISJOINTED THOUGHTS TO
SPEAK TO YOUR POINT I LOVE THE
POINT ABOUT HOW WE THINK ABOUT
THIS ABOUT POINT OF DESIGN AND
THINKING ABOUT IT IN WORK I'M
LOOKING AT WITH WEB CONTENT
ACCESSIBILITY GUIDELINES AND
BASELINE THERE IS MORE TO
ACCESSIBILITY WITH WHAT IS IN
GUIDELINES AND HAVING THEM
IMPLEMENTED IN CONTEXT OF HEALTH
TECHNOLOGIES AND TECHNOLOGIES
COLLECTING DATA FROM IS AT
STARTING POINT AND RELIES ON
PEOPLE THAT ARE OFTEN DISABLED
THEMSELVES ENGAGING IN LEGAL
ACTION FOR TECHNOLOGY TO CHANGE
THAT IS A BURDEN FOR COMMUNITIES
TO ENGAGE WITH TECHNOLOGY
IMPOSING A LEVEL OF BURDEN AND
TALKING ABOUT THIS GOING TO
POINT YOU ARE MAKING THIS IS A
RESPONSIBILITY OF THE DESIGN
COMMUNITY FROM EARLY ON NOT TO
HAVE TO WAIT FOR LEGAL ACTION TO
BE TAKEN FOR TYPES OF INCLUSIVE
TECHNOLOGIES TO BE BUILT.
OTHER POINT IS JUST RELATED TO,
YES. I SEE YOU BROUGHT UP THE
POINT EARLIER ON IN TERMS OF
TRUST OR HEALTH RESEARCHERS AND
IN CLINICIANS AND I THINK THAT
ALSO JUST TO ACKNOWLEDGE THE
POINT THAT, THAT TRUST IS NOT
EVENLY DISTRIBUTED ACROSS
COMMUNITIES THERE IS LOTS OF
VARIABILITY IN LEAVELE OF TRUST
THAT EXIST AND TO THE POINT THAT
IF WE TRY TO BE INCLUSIVE AND
TRYING TO INCREASE RESEARCH
REPRESENTATION AND IN
INITIATIVES PUTTING FORWARD THAT
WILL BE ESSENTIAL TO THINK ABOUT
THIS IN THIS CONTEXT AS WELL.
>>THANKS SO MUCH. NEXT
QUESTION?
>>SOMETHING THAT I THINK WE
HEARD IN ALL OF THE COMMUNITY
CONVERSATIONS WE HEARD ACROSS
THE COUNTRY AND CURIOUS HOW
PANEL WOULD RESPOND TO THIS
WHICH IS AROUND NOTION OF USING
INFORMATION POSTED ON SOCIAL
MEDIA TO INFORM OR HELP TO
ADVANCE HEALTH RESEARCH. YOU
KNOW, WE HEARD IN ALL OF THESE
COMMUNITY CONVENINGS QUESTIONS
OR CONCERNS THAT ARE AROUND THE
VALIDITY OF INFORMATION THAT IS
USED IN RESEARCH AND HOW
RESEARCHERS WOULD ASSESS
VALIDITY OF THE INFORMATION THAT
WAS POSTED. AS SOMEBODY WHO HAS
THREE TEENAGERS, I'M AWARE THAT
IS A THING.
I'M CURIOUS AS TO HOW EACH OF
YOU THINK ABOUT THAT AND RESPOND
TO COMMUNITY MEMBERS WHEN
RAISING QUESTIONS AND/OR
CONCERNS ABOUT PULLING
INFORMATION THAT PEOPLE POST ON
SOCIAL CHANNELS AND BRINGING
THAT INTO RESEARCH.
>>THANK YOU FOR THE QUESTION.
>>THE QUESTION THAT IS
PRIMARILY BASED ON VALIDATING IT
IS TRUTHFUL OR ACCURATE.
>>RIGHT.
>>YEAH. I MEAN, PERHAPS THIS
IS CYNICALLE OF ME AND WORK I
HAVE DONE SHOWS THAT INDIVIDUALS
ARE NOT NECESSARILY FORTHCOMING
WITH DOCTORS EITHER AND
INFORMATION THAT IS SHARED WITH
DOCTORS OR CLINICIANS DOESN'T
END UP IN THE HEALTH RECORD IN
THE SAME FORMAT OR SAME LEVEL OF
DETAIL AND I QUESTION THE
VALIDITY OF THAT INFORMATION AS
WELL SOMETIMES.
SO, YEAH. I THINK THAT THE
REALLY DIFFICULT QUESTION DATA
QUALITY REGARDLESS WHERE THEY
ARE IS IMPORTANT. I DON'T HAVE
THE ANSWER TO THAT ONE.
>>ONE EXAMPLE THAT COMES TO
MIND IS NOT MY AREA EITHER.
SO, BUT VOLUME I THINK OF DATA
AND SORT OF BREADTH OF THE
QUESTION CHANGES EQUATION TO ONE
EXAMPLE JOHN BROWN FIELD DID THE
TWITTER FLU DETECTOR AND WAS
ABLE TO DETECT FLU SPREAD ACROSS
US AND CDC MODELS TOO AND PUBLIC
POSTINGS OF LARGE AMOUNT OF
[INDISCERNIBLE]. SO, YES.
LIKE I'M SURE THAT PEOPLE ARE
RECORDING THINGS THAT MIGHT NOT
HAVE BEEN TRUE AND SYMPTOMS THAT
ARE UNRELATED AND THERE IS VALUE
THERE AND TO YOUR POINT THIS
INFORMATION ALGORITHMIC
ELEVATION OF SORT OF THE MOST
CLICK-WORTHY TYPE OF INFORMATION
SEEMS TO BE DOMINATING AND
PROBLEM IS GETTING WORSE NOT
BETTER FOR US UNFORTUNATELY.
>>ON THAT POINT I WOULD SAY
THERE IS SOMETHING TO BE SAID
ABOUT IS THAT ENVIRONMENT
WHETHER A SOCIAL MEDIA PLATFORM
OR IN COMMUNITY PHYSICALLE
EXPERIENCE IS THAT WHERE THAT
PARTICULAR INDIVIDUAL FIELD IS
COMFORTABLE BEING CANDID IS A
QUESTION AND DEVELOPMENT OF CHAT
BOTS IN HEALTH CARE SYSTEM RIGHT
IS THAT GOING INCREASE ACCESS TO
CARE OWE OR BE VIEWED AS CALLUS
YOU HAVE A COMPUTER EFFECTIVELY
HANDLING CARE AND HAVE SEEN
STUDIES HAVE BEEN PRETTY CLEAR
THAT ACCESS FOR MENTAL HEALTH
SERVICES EVEN IF A CHAT BEAU THE
CAN BE QUITE VALUABLE. WE WILL
HAVE INDIVIDUAL VARIABILITY AND
ROLE OF THE ANTHROPOLOGIST CAN'T
BE -- CAN'T BE OVERLOOKED IN
SETTINGS EVEN THOUGH WE ARE NOT
ALWAYS INCLUDED IN THE TEAMS AND
THINK THAT CONTEXT IS REALLY
KEY.
>>I THINK WHAT IS SO
INTERESTING FROM MY
UNDERSTANDING BASED ON COMMUNITY
CONVERSATION SOME SOCIAL MEDIA
CONVERSATIONS AROUND TEENAGERS
AND MENTAL HEALTH AND WHAT IS
INTERESTING IN THAT PARTICULAR
CASE IS SOME POSTS MIGHT NO THE
BE TRANSPARENT OR HONEST OR TRUE
AND THAT IN AND OF ITSELF MIGHT
BE A SIGNAL AND REASONS THAT A
TEEN IS POSTING SOMETHING THAT
IS NOT GENUINE AND HOW DO WE CAN
THE FOR THAT ASPECT OF THE DATA
AS PART OF TRYING TO UNDERSTAND
MENTAL HEALTH FOR OUR TEENAGERS?
>>MY CONCERN WOULD BE IN
THINKING THAT AARON WOULD BE AN
EXAMPLE AND GO TO COMMUNITY AND
EXPLAIN ABOUT WOE ARE ABLE TO
LEARN XYZ AND CDC RELATED TO THE
PANDEMIC AND BROAD LY SPEAKING E
HAVE TO ARM PEOPLE IN THE
COMMUNITY WITH THAT INFORMATION.
I THIS I THAT WITHOUT THAT, NO.
I WOULDN'T WANT TO HAVE A
CONVERSATION TRYING TO EXPLAIN
TO PEOPLE WHY SOCIAL MEDIA AND
LISTENING TO CONVERSATIONS WITH
LOTS OF CONFUSION THAT ARE ABOUT
THOSE CONNECTIONS.
SO, ARMING US WITH THAT
INFORMATION COULD BE REALLY
POWERFUL.
>>WHAT IS SO INTERESTING ABOUT
THAT TOO IS IF WE ARE THINKING
ABOUT INTENTIONALITY BEHIND WHY
SOMEONE IS USING A CERTAIN
PLATFORM AND SOCIAL MEDIA IS
USED TO ENGAGE WITH FRIENDS OR
REASON THAT MIGHT GENERATE TYPES
OF DATA THAT IS INTERESTING AS A
SECONDARY ANALYSIS VERSUS GOING
INTO COMMUNITY TALKING TO SCHOOL
AND GROUP OF TEENS USING DATA
FOR THESE TYPES HOW IT WILL
CHANGE BEHAVIOR AND WHAT
PLATFORM GETS USED FOR.
>>LISA?
>>HI. I'M LISA LEHMANN AND
PRIMARY CARE PHYSICIAN AFIFATED
WITH HARVARD MEDICAL SCHOOL AND
PUBLIC HEALTH AND BIOETHICS
ENTRUSTED GOOGLE AND PREVIOUSLY
DIRECTOR OF ETHICS AT VA. I
WANTED TO FOAL OE UP FIRST OF
ALL IN RONNIE'S COMMENT AND
QUESTION ABOUT SOCIAL MEDIA USE
WITH AN EXPERIENCE FROM THE VA
AND JUST ASK -- I'M CURIOUS IF
THERE IS A SENSE IN WHICH THE
INTENTION OF THE DATA USE AS
WELL AS RELATIONSHIP THAT THE
PEOPLE WHO ARE USING DATA HAVE
TO THE INDIVIDUALS MAKES A
DIFFERENCE. I WILL GIVE AN
SKAMENT M HERE THAT IN THE VA WE
HAVE -- WE HAD AND CONTINUE TO
HAVE HUGE CHALLENGES AROUND
SUICIDE PREVENTION AND ONE OF
THE THINGS THAT WE THOUGHT ABOUT
AND EXPLORED WAS THE USE OF
INDIVIDUAL SOCIAL MEDIA DATA AND
DIGITAL PHENOTYPE AS WAY TO
PREDICT SUICIDE AND RISK OF
SUICIDE AND TO INTERVENE USING
AI ALGORITHMS AND SO I THINK IT
RAISES SOME INTERESTING
QUESTIONS ABOUT IS THAT A UNIQUE
SITUATION IN GIVEN THE
RELATIONSHIP THAT THE VA HAS TO
VETERANS?
THEIR INTENTION TO PREVENT HARM
AND DO GOOD IN THAT SPACE.
USING PUBLICLY AVAILABLE DATA
AND I WILL THROW THAT OUT THERE
AND WASN'T MAIN REASON I STOOD
UP HERE. I HAVE ANOTHER
QUESTION, ONE THAT I WANTED TO
BRING US BACK TO IN TERMS OF
DATA SHARING AND DON'T KNOW IF I
SHOULD PAUSE THERE.
>>ONE THOUGHT IS, AGAIN, THIS
IS A SCENARIO THAT IS HIGH RISK
AND HIGH REWARD AND I CAN'T
REMEMBER THE NAME OF THE COMPANY
AND CAME TO MIND WHEN YOU SAID
THAT A COMPANY WORKING WITH
RESEARCH GROUP INSTALLING A
KEYBOARD AND OPERATING SYSTEM
LEVEL OF A KEYBOARD AND GOAL WAS
TO MEASURE AND SOMEBODY N LINE
COULD -- MEASURE WHAT PEOPLE
DELETED AND DIDN'T TYPE IN OR
POST OR TEXT TO FRIENDS AND HOW
OFTEN THEY DELETED MESSAGES BACK
AND FORTH WHERE THEY PAUSE THE
AND DEFLECTED IT AND HAD
CORRELATIONS TO ALL KINDS OF
DIFFERENT POTENTIAL EMOTIONAL,
YOU KNOW, CONDITIONS TO BE
LINKED TO THAT IS VERY INVASIVE;
RIGHT?
THINGS YOU DON'T SEND ARE
ARGUABLY MORE INDICATIVE OF
THINGS YOU DO SEND AND POINT IS
WELL-TAKEN. WE HAVE TO THINK
INNOVATIVELY IN THESE SPACES.
>>I WOULD SAY I TEND TO BE THE
TYPE OF PERSON SAYING IF DATA
ALREADY OUT THERE WE SHOULD PUT
THEM TO GOOD USE AND WHAT IS A
BETTER USE THAN PREVENTING
SUICIDE ORE A DEATH?
FOR ME THAT LENDS ME TO BE
CAUTIOUSLY SUPPORTIVE OF THAT
KIND OF USE.
HOWEVER, I'M VERY MUCH CONCERNED
ABOUT DIVERTING EFFORTS AWAY
FROM ATTENTION THAT PEOPLE NOT
ON SOCIAL MEDIA NEED AS WELL.
RIGHT?
FOR ME, IT IS THAT CALIBRATION
OF RESOURCES AND IS THAT WHERE
WE SHOULD BE PRIORITIZING?
MAYBE NOT OR MAYBE SO. YOU IF
KNOW?
BUT --
>>YOUR POINT ABOUT RELATIONSHIP
RESONATES WITH ME AND ANY TIME
WITH VA AND VETERANS AND HAVING
A TRUSTED RELATIONSHIP AND TYPES
OF THINGS MATTERING TO THE
COMMUNITY THAT INSTITUTION OR
RESEARCHERS CAN THEN RESPOND TO.
I THINK OF THAT AS A REALLY
GREAT EXAMPLE WHY THIS TRUST
BUILDING IS SO IMPORTANT. SO,
WHEN -- IF THE VA IS APPROACHING
VETERANS TALKING ABOUT
INITIATIVE CHANCE OF TRUST
BELIEVING IT WILL BE USE TOED R
GOOD AND TO ENGAGE IN PARTICULAR
WAYS WILL BE DIFFERENT THAN IF
IT IS ANOTHER ENTITY THAT
VETERANS ARE NOT FAMILIAR WITH
AND MORE CONCERN ABOUT WHAT ELSE
MIGHT BE HAPPENING WITH DATA AND
WHAT ARE UNINTENDED CONSEQUENCES
THERE MIGHT BE AND APPRECIATE
YOUR POINT ABOUT THE
RELATIONSHIP THERE.
>>THANKS VERY MUCH. I WANT TO
ASK A QUESTION ABOUT DATA
SHARING POLICY AND IN
PARTICULAR, CURIOUS ABOUT YOUR
PERSPECTIVES ON THE CURRENT
LIMITATIONS ON PIPA AND PART OF
THE CHALLENGE WE HAVE ABOUT USE
OF DATA BY THE -- BY INDUSTRY OR
BY START-UPS OR BY -- AND
INTEGRATING MULTIPLE SOURCES OF
DATA. GENOMIC AND EHR DATA AND
WEARABLE DATA; RIGHT?
ALL DIFFERENT KINDS OF DATA THAT
WILL GIVE US REALLY POTENTIAL TO
REALIZE BENEFITS OF AI FOR
PATIENTS OUTCOMES AND DO WE NEED
A CHANGE IN POLICY THAT ALLOWS
US TO HAVE PRIVACY PROTECTIONS
MUCH MORE SIMILAR TO EUGPVR AND
THAT ALLOWS US TO HAVE THE
POLICIES FOLLOW THE DATA.
AS OPPOSED TO CUSTODIAN OF THE
DATA BECAUSE AN ORGANIZATION
COLLECTS DATE WLAU A HEALTH CARE
SYSTEM OR TECH COMPANY.
PROBLEM IS HIPAA DOESN'T APPLY
TO BUSINESSES AND RESTRICTIONS
ARE NOT THERE. I WANT TO JUST
POINT THAT OUT SAYING WHAT CAN
WE DO AS A COMMUNITY AT NIH AND
OTHERS TO REALLY HELP TO MOVE
THE POLICY FORWARD IN THIS SP
SPACE.
RELATE TODAY THAT I WILL REFLECT
ON MY EXPERIENCE AT GOOGLE WHERE
WE PUSHED FOR TREMENDOUS TRANCE
PAIRNCY AND PUBLIC/PRIVATE
PARTNERSHIPS ABOUT GOOGLE'S ROLE
DOING AI AND MACHINE LEARNING ON
DATA AND GOT THAT INTO CONSENTS.
THERE IS A REAL PUSHBACK FROM
HEALTH CARE SYSTEMS NOT WANTING
TO DISCLOSE THAT TO THEIR
PATIENTS.
I POINT THIS OUT. I THINK WE
HAVE A TENDENCY TO SAY IT IS ALL
-- INDUSTRY IS NOT TRYING TO DO
THE RIGHT THING. I DON'T THINK
IT IS THAT SIMPLE AND SOMETIMES
INDUSTRY IS ACTUALLY TRYING TO
DO THE RIGHT THING BEING ETHICAL
PUSHING FOR TRANSPARENCY HEALTH
CARE SYSTEMS ARE NOT ALWAYS
EAGER TO TAKE STEPS NECESSARY TO
BE TRANSPARENT WITH DATA
HOLDERS.
CURIOUS WHAT PEOPLE'S THOUGHTS
ARE AND OVERCOMING SOME OF THAT
AND MOVING TOWARDS GREATER
BETTER POLICIES WITH REGARD TO
PRIVACY PROTECTIONS IN THE U
SCHS
OUTSIDE OF THAT SPACE TOO. I
DON'T THINK HIPAA IS AS LIMITED
AS PEOPLE THINK IT IS.
PERCEPTION IS SOMETIMES
EVERYTHING.
RIGHT?
SO, I THINK IT WOULD BE GOOD FOR
US TO HAVE A NEW APPROACH, YOU
KNOW, IF ADPPA WOULD BE ADVANCED
THIS YEAR. I WOULDN'T BE UPSET
ABOUT THAT. SO, YEAH. I THINK
IN TERMS OF RELUCTANCE ISSUES
YOU MENTIONED WITH ARE WE USING
AI OR NOT USING AI?
A LOT OF THIS RELATES TO DO WE
HAVE DISRUPINNOVATION WE HAVE ON
THE POLICISIDE TO ACCOMPANY
TECHNOLOGY WE CAN'T THINK WHAT
WE HAVE WORKING OR NOT WORKING
SO WELL IN LEGAL FRAMEWORK THAT
WILL CONTINUE WITH THESE
TECHNOLOGIES AND VERY MUCH
LOOKING FORWARD TO FUTURE PANEL
DISCUSSIONS TODAY.
>>FOLLOWUP TO THAT QUESTION?
>>I FEEL WE COULD HAVE ANOTHER
HOUR ON THIS TOPIC ALONE AND YOU
ARE EXACTLY RIGHT AND A LOT OF
TIMES HIPAA ALLOWS FOR LOTS OF
THINGS THAT PEOPLE UNDERSTAND
THAT IT DOES. WE HAVE THOSE
CONVERSATIONS VERY OFTEN AND I
THINK THERE IS STILL JUST A --
THERE IS AN OCEAN OF SORT OF
AMBIGUITY WHEN WHAT IT ACTUALLY
DOES OR DOESN'T DO TO PREVENT
PEOPLE FROM USING DATA FOR
DIFFERENT RESEARCH PURPOSES AND
I ALSO, YOU KNOW, I JUST -- I
THINK THAT WE -- MAYBE WE -- WE
OFTEN HAVE THESE CONVERSATIONS
IN HOSPITAL GROUPS WHERE
CONVERSATION IS DRIVEN FROM RISK
MOTIVATION OR INNOVATIVE OR
ANYTHING THAT IS POSITIVE
OUTCOME WISE FOR PATIENT OR
PARTICIPANTS AND WE SAW WITH
MASS DATA BREACHES AND HOSPITALS
AND EVERYTHING INTERTWINED
LAWYERS ARE ONES THAT QUASH
THESE THINGS IN MY EXPERIENCE
AND PRIVY TO CONVERSATIONS AND
HAVING SOMETHING REALLY AMAZING
THAT MIGHT HAVE PUSHED THE
ENVELOPE A LITTLE BIT AND SORRY.
>>LAWYERS IN LEGAL DEPARTMENTS.
>>SORRY.
>>LAWYERS ELSEWHERE WHO ARE
THINKING ABOUT.
>>YEAH.
>>SCIENCE AND NOT PROTECTING
ORGANIZATIONAL ASSETS, I THINK,
IS A DISTINCTION.
>>YEAH.
>>THAT IS IMPORTANT TO MAKE.
>>YEAH. EXACTLY.
>>OTHER REACTIONS?
>>BRIEFLY SAYING CIRCLES BACK
TO DISCUSSION ABOUT TRANSPARENCY
COMMUNITY AND CONVERSATION WITH
PEOPLE THAT ARE EXPERTS AND
THINKING ABOUT THIS IN HIPAA AND
WHAT 2 AFFORDS AND DOESN'T
AFFORD AND THINKING, AGAIN,
THINKING ABOUT ANY PATIENT WHO
IS THINKING ABOUT THIS NOT
REALLY UNDERSTANDING HIPAA AND
ITS REACH AND WHAT IT MEANS IN
TERMS WHAT THEY ARE CONSENTING
TO, YOU KNOW, CERTAIN TYPES OF
DATA SHARING AND WHAT IT MIGHT
MEAN FOR DATA FLOWING INTO OTHER
SPACES CIRCLING BACKING TO IDEA
HOW WE MAKE THAT TRANSPARENT AS
WELL.
>>RIGHT.
>>KRYSTAL?
>>HI, EVERYONE. THANK YOU AND
GOOD MORNING AND I'M KRYSTAL AND
I WILL SPEAK ON AN AFTERNOON
PANEL AND QUESTION TO THE
CURRENT PANELISTS IS, ONE,
RELATING TO INNOVATION
INEQUALITY.
SO, WE HAVE HAD NUMEROUS CALLS.
THE FIELDS ARE PROGRESSING
TOWARDS POLICIES OF OPEN DATA.
HOWEVER, THIS DOES NOT REALLY
BENEFIT TO PERMITINOVATIONS TO
BE OWNED ORE STEWARDED BY
COMMUNITIES COMPARED TO OTHER
ENTITIES THAT MIGHT MORE
INEQUITIBLY BENEFIT FROM OPEN
DATA.
FOR INSTANCE, WITH FOR PROFIT
COMPANIES, INSTANCE, THEY CAN,
OF COURSE, BENEFIT FROM
ACCESSING PUBLIC DATABASES AND
AT THE SAME TIME THEY CAN HOLD
THEIR OWN PRIVATE DATA AS A
FUNCTION OF PROTECTING THEIR OWN
INNOVATIONS.
I KNOW THIS TO BE TRUE. I
WORKED WITH THE LARGEST HEALTH
CARE MANAGEMENT ORGANIZATION IN
THE COUNTRY. I KIND OF
ASTOUNDED BY THE DIFFERENCES IN
ETHICS BETWEEN BIOMEDICAL
RESEARCH AND ACADEMIC
INSTITUTIONS VERSUS IN INDUSTRY
AND SIMILARLY ACADEMIC
INSTITUTIONS ARE ABLE TO ALSO
CLAIM INTELLECTUAL PROPERTY THAT
IS CODIFIED [INDISCERNIBLE] IN
THAT THEY ARE ABLE TO USE, YOU
KNOW, RESULTS OF FEDERALLY
FUNDED RESEARCH IN ORDER TO
CLAIM IP.
THE SAME CANNOT BE SAID FOR
COMMUNITIES AND ESPECIALLY
COMMUNITIES THAT ARE
PARTICULARLY FROM MY OWN THAT
ARE INDIGENOUS AND ARE SUBJECT
OF RARE VARIANT RESEARCH AND
ALSO BY A SUBSET OF US BEING NOT
REALLY PARTICIPATING IN
RESEARCH.
THERE IS A HIGH MOTIVATION TO
INCLUDE US IN RESEARCH. THERE
IS LOTS OF INTERESTS THAT ARE
NOT ONLY IN BIOLOGICALLY
SPECIFIC VARIANTS OF COMMUNITIES
AND TALKING ABOUT FACEBOOK DATA
THERE IS INTEREST IN ACCESS XHOD
PIING AND INCLUDING INDIGENOUS
LANGUAGES IN AI-MACHINE LEARNING
MODELS WORKING OUT IN
INNOVATIONS AND COMMODIFICATION
OF DATA IS SOMETHING THAT I'M
INCREDIBLY CONCERNED ABOUT,
ACTUALLY. HOW DO WE RESOLVE
THIS COMMUNITY-BASED INNOVATION
INNO QUALITY WHILE ALSO ASKING
FOR ACCESS TO COMMUNITIES?
AND THIS IS A DOVE-TAILED WITH
LATER QUESTION OF BENEFIT
EQUITY, OF COURSE.
HOW DO WE ACTUALLY ENSURE THAT
PROMISES THAT WE ARE ASKING OF
COMMUNITIES IN USING DATA
IDENTIFIES TO PROXIMAL BENEFITS
AND IS TIED TO INNOVATION
INEQUALITY FRAMEWORK.
>>THANK YOU.
>>I LOVE THAT QUESTION. IT IS
SOMETHING I HAVE THOUGHT A LOT
ABOUT WITH ONE PARTICULAR
COMMUNITY PARTNERSHIP I HAVE AND
IS PUBLIC HOUSING COMMUNITY IN
CHARLOTTESVILLE WHERE I LIVE AND
APPROXIMATE TO UVA HAS SITE
RESEARCH NOW AND PATTERNS WE SEE
WITH HISTORICALLY MARGINALIZED
COMMUNITIES SUBLT TO RESEARCH IN
TERMS OF TRUST AND DEEP
FRUSTRATION AND LAYERS THAT WE
THINK ABOUT.
WHAT HAS COME OFTEN TYPE OF
BEING HUMBLED OVER AND OVER
AGAIN AND THIS IS THE COMMUNITY
PARTNERSHIP THAT IS LONGEST THAN
I HAVE HAD AND STARTS OUT WITH
IDEA THIS IS A PARTICULAR
RESEARCH PROJECT AND WOULD IT
RESONATE AND AFTER A FEW YEARS
OF ENGAGEMENT AND ONE MOMENT
THAT WILL STICK WITH ME ABOUT MY
MAIN CONTACT PERSON THERE COMING
BACK SAYING YOU CAME WITH
RESEARCH IDEA THAT IS 20TH ON
LIST OF THINGS THAT MATTERED TO
US AND LED TO A CONVERSATION AND
INITIATION OF COMMUNITY RESEARCH
BOARD AND PUBLIC HOUSING
ASSOCIATES IN CHARLOTTESVILLE
AND THERE IS A PARTNERSHIP WITH
UNIVERSITY ANY RESEARCH TAKING
PLACE IN LOW INCOME COMMUNITIES
IN CHARLOTTESVILLE HAS TO GO
THROUGH THIS RESEARCH BOARD MADE
UP OF LOW-INCOME RESIDENTS OF
THE CITY DOESN'T MATTER IF
RESEARCH MAKING SURVEY-BASE REED
SEARCH OR RESEARCH HAPPENING IN
COMMUNITY OR USING SOCIAL MEDIA
DATA OF COMMUNITY MEMBERS;
RIGHT?
REGARDLESS WHAT IT IS IF
INVOLVING THIS COMMUNITY
RESIDENTS OF THIS COMMUNITY ARE
ONES THAT HAVE TO FIRST APPROVE
RESEARCH AND AS PART OF
CONVERSATION IS ABOUT DATA
OWNERSHIP. THEY HAVE TO ALSO
HAVE OWNERSHIP ALSO OF THAT DATA
AND UNIVERSITY HAS DONE ALSO
COMMITTED TO HAVING A PLACE
WHERE DATA IS STORED AND LAST
PART OF THAT MOVING FORWARD IS
THINKING ABOUT WHAT TYPES OF
RESEARCH QUESTIONS MATTER TO
COMMUNITY AND UNIVERSITY
COMMITTING TO HELPING COMMUNITY
FIND RESEARCHERS WHO WILL ENGAGE
WITH THEM AROUND THOSE DATA
COLLECTED AND COMMUNITY CAN USE
DATA FOR GRANTS THEY WANT TO
APPLY TO OR INITIATIVES THEY
WANT TO TAKE BECAUSE DATA CAME
FROM THEIR COMMUNITY.
>>I LOVE -- BACK HERE. WHERE
DID YOU GO?
>>I LOVE YOUR QUESTION.
AND JUST TO AT LAST MINUTE THAT
RUPA MENTIONED IN ANOTHER ASPECT
OF MY WORK I SIT ON HEALTH
EQUITY TASKFORCE COALITION AND
RECOMMENDATION THAT IS TRYING TO
BE PUT FORTH IS IN REGARDS TO
HAVING ADVISORY BOARDS IN THIS
SPACE THAT WOULD HAVE THE ACTION
THAT RUPA JUST DESCRIBED.
TO ENABLE COMMUNITIES WITH
BETTER SENSE OF OWNERSHIP AND
OWN DATA AND BEING PART OF THAT
PROCESS AND THINK AS AN EXAMPLE
OF SOMETHING THAT IS TANGIBLE
AND A GOOD STEP THAT CAN
ACTUALLY BE DONE WITHOUT A LOT
OF HEAVY LIFT. I WANTED TO
SHARE THAT. AWESOME QUESTION.
>>FANTASTIC QUESTION.
COMPLICATE TODAY ANSWER IN TERMS
OF DATA GOVERNANCE AND MOVING IT
FORWARD AND I ABSOLUTELY SHARE
CONCERNS ABOUT INEQUALITY AND I
GUESS IN ADDITION TO COMMENTS
THAT BOTH RAISED THAT THIS ISSUE
COMES BACK TO RIGHT TO SCIENCE
IS NOT JUST DOWNSTREAM BENEFIT
ABOUT YOU WHO GETS TO ASK
QUESTIONS AND WHO CONDUCTS
RESEARCH AND WHO PRIORITIZES
WHICH QUESTIONS GET ASKED AND SO
I THINK THAT WE NEED TO BE
LOOKING AT THAT ENTIRE PROCESS
OF SCIENCE IN ADDITION TO
DOWNSTREAM BENEFITS.
>>YEAH. GREAT QUESTION.
>>I THINK THAT I HOPE THAT MY
COMMENTS TODAY DON'T GET
MISCONSTRUED TO PUT ME SQUARELY
IN REMOVE ALL RESTRICTIONS
PRIVACIES DID I'M NOT IN THAT
CAMP BUT UNDERSTAND PRIVACY
SAFEGUARDS AND TO YOUR POINT
COMPANIES HAVE BENEFITS OF
PUBLIC DATA AND PRIVATE DATA
BUILDING ON TOP OF COMPANIES
WILL USE DATA FOR BENEFITS WITH
WHAT BUSINESSES NEED TO DO FOR
BUSINESS VALUE AND THINK THAT MY
INCLINATION TO BE MAYBE A LITTLE
MORE TO THAT SIDE OF WE NEED TO
MOVE A LITTLE MORE QUICKLY COMES
FROM LOTS OF THE CONCERNS THAT
RESEARCH DOES NEED TO BE
COUNTERBALANCE IF ANY HAVE
WATCHED FOR INSTANCE TESTIMONY
BEFORE CONGRESS CONGRESS DOESN'T
KNOW HOW TO -- SOME OF THE
QUESTIONS ASKED WERE, YOU KNOW,
JUST VERY, VERY, VERY OBVIOUSLY
THEY DON'T KNOW WHAT QUESTIONS
TO ASK AND I THINK THAT IT IS
INCUMBENT ON EVERYBODY IN THIS
ROOM AND FUNDING AND IMPORTANCE
WE PUT TO MOVE MORE QUICKLY TO
MATCH THE MOMENT BECAUSE THESE
DATA ARE BEING USED AND THEY ARE
RUNNING AWAY WITH IT IN A WAY
THAT IS COUNTERPRODUCTIVE TO
COMMONWEALTH AT LARGE. WE HAVE
TO RECOGNIZE WE DON'T HAVE
ACCESS TO DATA AND HAVE TO COME
UP WITH OWN DATA AND BE READY TO
PRESENT WHY LIMITATIONS FOR WHAT
COMPANIES CAN DO WITH IT ARE
IMPORTANT. WE HAVE TO HAVE FAQS
AND PAPERS AND SCIENCE BEHIND IT
AND TO SAY THIS IS WHY AND WORK
THAT IS INNOVATIVE AND PRESSING
ENVELOPE TOO. WE ARE ABLE TO
HAVE COUNTERBALANCE THAT WE N
NEED.
>>WE HAVE A QUESTION FROM A
VIEWER ONLINE SAYING THAT SOME
DATA COLLECTION IS MANDATED NOT
CONSENTED AND NEWBORN SCREENING
AND PUBLIC HEALTH SURVEILLANCE
PROGRAMS GREAT SOURCE OF DATA
FOR SCREENING AND LIFELONG CARE
HOW DO WE LEVERAGE THIS WHILE
RESPECTING PRIVACY?
>>I MEAN, I WOULD JUST SAY THAT
LOTS OF THIS RELATES TO PRIVACY
NOT BEING ABSOLUTE AND PRIVACY
IS RELATIVE. IT IS ENTWINED
WITH ALL THESE RIGHTS IT THAT WE
HAVE. SO, FINDING A WAY TO BE
RESPECTFUL AND TRYING TO FIND A
WAY TO HAVE PROCESS INVOLVE
PEOPLE AND INVOLVE INPUT AND
ACTUAL SHARED DECISION MAKING
COULD BE USEFUL AND THINK IT
WOULD BE I WOULDN'T SUPPORT US
SAYING NO DON'T USE MANDATED OR
MANDATORY COLLECTED DATA FOR ANY
HEALTH PURPOSES THAT I THINK
THAT HURTS ALL OF US IN THE LONG
RUN AND WE SHOULD USE THAT TO
HELP EVERYBODY AND IS THIS
BALANCING OF PRIORITIES.
>>WE HAVE 8 MINUTES LEFT AND
NOT SEEING ANYONE AT THE
MICROPHONE NOR DOES IT LOOK LIKE
WE HAVE FURTHER QUESTIONS FROM
THE PUBLIC AND I WOULD LIKE TO
KIND OF FRAME A LAST QUESTION TO
PANELISTS WE CAN START WITH
AARON GOING DOWN THE TABLE AND
KOLBI ENDING WITH YOU TO MAKE
SURE YOU CAN ADD WHETHER OR NOT
THERE IS ANYTHING FROM
ENGAGEMENT SESSIONS THAT WE
FACILITATED OR RISKS TO MENTION
AND I WOULD LIKE YOU ALL TO TAKE
A COUPLE MINUTES.
EACH OF YOU HAS -- HAVE DONE
DIFFERENT FORMLES OF COMMUNITY
OR PUBLIC ENGAGEMENT THROUGH
YOUR OWN WORK IN VERY DIFFERENT
CONTEXTS IN SECTORS AND SPHERES
TO THINK ABOUT YOUR WORK AND
LESSONS LEARNED AND WE HEARD
ABOUT MANY OF THEM ALREADY
TODAY. IF THERE IS ANYTHING YOU
WANT TO SORT OF SHARE THAT YOU
HAVEN'T ALREADY SHARED AND
LESSONS LEARNED FROM YOUR OWN
WORK AS WELL AS POTENTIALLY
THOUGHTS RELATED TO WHAT -- WHAT
WE SHOULD THINK ABOUT IN TERMS
OF HOW TO ADVISE NIH ABOUT HOW
THEY SHOULD BE THINKING ABOUT
THEIR PROGRAMS AND POLICIES IN
THIS SPACE OF NOVEL DATA. WE
CAN START WITH YOU, AARON.
>>YES. I THINK THAT ONE THING
MAYBE WE DIDN'T TOUCH ON THAT I
-- I THINK WE NEED TO CONTINUE
TO HAVE CONVERSATIONS AROUND IS
THAT PEOPLE ARE GENERATING DATA
AND I THINK ONE THING WE HAVE
MADE A BIG INVESTMENT WITH OUR
PLATFORM FOR MOBILE OR SMART
WATCH ENGAGEMENT IS THINKING
THROUGH WAYS TO REALLY IN RAEL
ENGAGE WITH PEOPLE IN THIS DATA
AND THINK THAT WE ALWAYS HAVE
SORT OF SEEN RANDOMIZED CONTROL
TRIAL EVERYBODY GETS SAME THING
OR SAME INTERVENTION OR SAME --
YOU KNOW, AND THAT IS NOT THE
WORLD IN WHICH WE LIVE IN, IN
ALL ASPECTS OF DIGITAL SPACE.
I WAS PICKING OUT A RUG FOR MY
OFFICE. I DIDN'T CHECK OUT AND
I GOT AN E-MAIL NEXT DAY SAYING
IT WAS ON SALE AND THOOEZ ARE
THREE OR FOUR THINGS THAT GO
WITH THAT RUG AND ARE PRETTY
NICE, ACTUALLY.
WE ARE GENERATING ALL THIS DATA
IN REAL-TIME AND SOME INNOVATIVE
GROUPS WE WORK WITH ARE REALLY
FIGURING OUT HOW TO TAILOR
EXPERIENCES IN A WAY THAT IS
MEANINGFUL AND ENGAGES WITH
PEOPLE WHO ARE CHOOSING TO BE
PART OF THE RESEARCH. AND IS
REAL-TIME AND IS ACTIONABLE
SOMETIMES AND IS REALLY SORT OF
PLANTING THE FLAG IN THE FUTURE
FOR WHERE I HOPE A LOT OF THESE
THEMES GO AND ADAPTIVE
INTERVENTIONS AND REAL-TIME DATA
COLLECTION THAT HAS INSIDE
SURFACE THAT IS ANOTHER AREA
THAT NIH CAN INVEST AND EXPLORE.
>>ITS HARD FOR ME TO ANSWER
THAT QUESTION I HAVE DONE WORK
IN CONTEXTS AND SPACES AND
REWARDING RESEARCH OR IMPORTANT
RESEARCH I HAVE DONE IN
ENGAGEMENT SPACE I HAVE HAD A
HARD TIME GETTING FUNDED AND
REALLY HARD TIME GETTING PEOPLE
TO SAY YES YOU CAN GO AHEAD AND
TAKE TIME TO DO THAT.
THAT IS WHERE MOST MEANINGFUL
INSIGHTS WERE FOUND FOR ME AND
THINKING BACK TO WHERE I AM AND
MY ROLE AND WHAT I HAVE LEARNED
AND WOULD LIKE TO SEE FUTURE IS
THINKING ABOUT GOVERNMENT HAS
OBLIGATION TO ADVANCE HUMAN
RIGHT TO SCIENCE AND HEALTH AND
INVOLVES RESPECTING THAT; RIGHT?
SO ITSELF IT WILL PREVENT PEOPLE
FROM ADVANCING THEIR OWN HEALTH
AND WOULD PROTECT THAT RIGHT BY
MAKING SURE OTHERS AND
NON-GOVERNMENTAL ACTORS ARE ALSO
RESPECTING THAT.
IT WOULD HELP CREATE CONDITIONS
TO FULFILL RIGHT TO HEALTH OR
SCIENCE AND LAST ONE IS WHERE I
THINK WE NEED REALLY THE NIH TO
HELP IN PAST FEW YEARS NIH HAS
MOVED TREMENDOUSLY IN THAT
DIRECTION AND SPACE AND SHOUTOUT
TO NIH FOR THAT AND WE HAVE TO
LEAN IN MORE AND ENGAGEMENT WORK
IF WE WANT TO BE SUCCESSFUL
NEEDS LONGER TERM FUNDING CAN'T
GO THROUGH NORMAL MECHANISMS
THAT ARE THERE AND
ADMINISTRATIVE SUPPLEMENTS FOR
BIOETHICS ISSUES IS HOW LOTS OF
THIS WORK GETS DONE AND CALL IS
FOR 12 MONTH FUNDING CYCLE AND
AWARDS TEND TO BE SHORTER THAN
12 MONTHS. IF YOU WANT TO BUILD
RELATIONSHIPS WITH COMMUNITIES
THAT WILL ENABLE THAT TRUST TO
BE BUILT; RIGHT?
THAT WILL HELP YOU ACHIEVE WHAT
TO GET OUT OF THAT WORK HAS TO
BE LONGER AND NOT JUST FLY IN
FOR ONE PROJECT AND GO TOWARDS
WHERE THE NEXT FUNDING IS. SO,
THAT IS THE BIG STORY I WOULD
SAY IS THAT WE JUST HAVE TO HAVE
SOME SORT OF REALIGNMENT OF OUR
PRIORITIES.
UNFORTUNATELY, MONEY PLAYS A
ROLE IN THAT.
>>SO, STARTING ABOUT I SAYING I
AM SO APPRECIATIVE OF SEEING
DIRECTION THAT NIH IS MOVING
WITH COMMUNITY CONVERSATIONS
THAT WERE HAD IN THE CONTEXT OF
THIS WORK AND IMAGINE US PUSHING
US FURTHER IN WAYS ECHOING WHAT
JEN IS SAYING AND HERE STARTING
WITH RESEARCH QUESTIONS WE HAVE
COME UP WITH AS A SCIENTIFIC
COMMUNITY GOING OUT TO THE
COMMUNITY ASKING THEM FOR
FEEDBACK ON THOSE AND WOULD THEY
BE WILLING TO ENGAGE AND TAKING
FOR THEM TO ENGAGE IN QUESTIONS
AND THERE IS A NEED TO CONTINUE
TO FLIP PARADIGM AND STARTING
WITH CONVERSATIONS WITH THE
COMMUNITY AND WHAT ARE QUESTIONS
THAT MATTER TO YOU AND INSTEAD
OF BEING DRIVEN BY NEW
TECHNOLOGIES AND DATA TYPES WHAT
QUESTIONS WE WANT TO ASK BECAUSE
THEY ARE AVAILABLE AND STARTING
WITH WHAT QUESTIONS MATTER AND
BASED ON WHAT TYPES OF
TECHNOLOGIES WE NEED TO ANSWER
THOSE PARTICULAR QUESTIONS OR
WHAT DATA IS NEED TODAY ANSWER
THOSE MRAR QUESTIONS IS ONE
OVERARCHING REFLECTION AND
CAPACITY BUILDING IN COMMUNITIES
THEMSELVES AND COMMUNITIES
THINKING ABOUT THEM AND WAYS
THEY GENERATE DATA OR
PARTICIPATE IN DATA GENERATION,
HOW DO WE ALSO BEYOND HAVING
REALLY AMAZING KIND OF STEPS IN
THE DIRECTION OF BRINGING IN
PEOPLE FROM HISTORICALLY
MARGINALIZED COMMUNITIES INTO
THE SCIENTIFIC WORKFORCE AND
BEYOND THAT AND HAVING PEOPLE
AND PROFESSIONAL TRAINING THAT
MAYBE MANY IN THIS ROOMLE HAVE
AND HOW WE MORE DEMOCRATIZE
SCIENCE WRITING ABILITY TO
ENGAGE AND ANALYZING DATA NOT
JUST OPEN DATA BUT BILLING
CAPACITY WITHIN COMMUNITIES TO
ANALYZE DATA AND ANSWER
QUESTIONS ON DATA THAT IS
AVAILABLE.
>>I WILL CLOSE.
I WANT TO JUST THINKING ABOUT
ENTIRE PROCESS I WANTED TO MAKE
SURE THAT EVERYONE IS AWARE HOW
MEANINGFUL IT WAS TO COMMUNITIES
THAT THE NIH AND WORKING GROUP
TOOK TIME TO SHOW UP TO COME TO
THEM.
TO INFORM THEM OF AT LEAST WHAT
WAS PLANNED OR WHAT PEOPLE WERE
SORT OF DREAMING UP EVEN IF THEY
DIDN'T FULLY UNDERSTAND THE
ENTIRE PROCESS.
SO, JUST THINKING ABOUT THE NEED
FOR A SUSTAINABLE COMMUNITY
ENGAGEMENT MODEL THROUGH ALL OF
THIS WORK IS SO VITALLY
IMPORTANT.
I ALSO WANTED TO JUST MENTION,
YOU KNOW, THINKING ABOUT THIS
IDEA OF TRUSTWORTHINESS WE
DISCUSSED EARLIER THAT I THINK
IS REALLY EXPLORING THROUGH
COMMUNITY ENGAGEMENT MECHANISMS
WHAT IT MEANS TO VARIOUS
COMMUNITIES AND I THINK
DEFINITELY IT NEEDS TO HAPPEN.
OF COURSE, BUILDING TRUST AND
MAINTAINING TRUST IS OBVIOUSLY
INCREDIBLY DIFFICULT. IT IS
VERY FRAGILE.
I THINK THAT RUPA MENTIONED IT
NOT JUST ABOUT A ONE-OFF AND
DROPPING OFF INTO A COMMUNITY
WITH ITS OWN HISTORICAL STOPPING
DOING THAT IS KIND OF I THINK
THE VIEW OF PEOPLE IN THE
COMMUNITY AND THINK THAT THE
OTHER THING I WANT TO SAY IS
IMPORTANT FOR EVERYONE IN THE
COMMUNITY ENGAGEMENT AND
RESEARCHER SPACE THAT WERE
OPERATING WITHIN A SOCIETY OF
DEEP MISTRUST. EVEN READING
WITHIN THE SUMMARIES FOR THIS.
OTHER SOCIETAL THINGS SUCH AS
RO-V. WADE BEING OVERTURNED CAME
UP MULTIPLE TIMES AND IN
MULTIPLE LOCATIONS AND IT IS
INCUMBENT UPON US IN THIS SPACE
KNOWING HOW FRAGILE AND INTENSE
THINGS ARE TO PUT IN REALLY THE
EFFORT AND WORK TO HAVE BETTER
OUTCOMES BY ENGAGING
INDIVIDUALS.
>>THANK YOU SO MUCH. KOLBI,
RUPA, JEN AND AARON EXPRESSING
DEEP GRATITUDE FOR YOUR
PARTICIPATION IN THIS NANL IS
INCREDIBLE PANEL AND VERY
INTERESTING AND THANKS VERY
MUCH.
>> WELCOME BACK FOR
THE SECOND PANEL OF OUR MEETING
TODAY. THIS PANEL IS GOING TO
FOCUS PARTICULARLY ON NEW TYPES
OF ANALYSIS SUCH AS ARTIFICIAL
INTELLIGENCE AND MACHINE
LEARNING. I AM VERY, VERY
PLEASED TO HAVE THIS PANEL OF
SPEAKERS WITH ME TODAY.
STARTING AT THE FAR END. MONICA
RODRIGUEZ IS SENIOR DIRECTOR AT
PYXIS PARTNERS WHO, AGAIN, LED
OUR COMMUNITY CONVERSATIONS.
MONICA HELPED TO DRIVE THIS
FORWARD FOR US IN THE PUBLIC
ENGAGEMENT. SHE WILL BE
SPEAKING IN THE VOICE OF THE
FOLKS WE TALKED WITH TODAY.
NEXT, WE HAVE MILDRED CHO, WHO
IS A PROFESSOR IN THE DEPARTMENT
OF PEDIATRICS IN DEPARTMENT OF
MEDICAL GENETICS IN THE
DEPARTMENT OF MEDICINE AT
STANFORD. HER AREAS OF INTEREST
ARE ETHICS ON SOCIAL IMPACTS
GENETIC RESEARCH AND BETA
APPLICATIONS AND RESEARCH
INCLUDING AI. NEXT IS LISA
LEHMANN A PRIMARY CARE PHYSICIAN
AND DIRECTOR AT BIOETHICS AT
HARVARD WITH A VERY INTERESTING
BACKGROUND OF THE INCLUDES BEING
DIRECTOR OF BIOETHICS AT GOOGLE.
FINALLY, WE HAVE JAY SCHNITZER,
WHO IS SENIOR VICE PRESIDENT AND
CHIEF TECHNOLOGY OFFICER AND
CHIEF MEDICAL OFFICER AT MOOIT
RE. HE HAS BEEN OVER HIS CAREER
A LEADER IN BIOMEDICAL HEALTH
AND SCIENCE INNOVATION. THANK
YOU SO MUCH FOR BEING HERE.
NEXT SLIDE. TERRIFIC.
THIS PANEL.
SUCH AS THOSE INCLUDING AI AND
ARTIFICIAL INTELLIGENCE AND
MACHINE LEARNING AND AS WITH THE
FIRST PANEL, TOPIC WAS
IDENTIFIED IN PHASE 1.
THEN TRANSLATED TO CASE STUDIES
FOR USE IN COMMUNITY
CONVERSATIONS AND, AGAIN, WE
WILL BE SORT OF -- THIS PANEL
WILL BE SPENT CONTEXTUALIZING
WHAT WE LEARNED FROM COMMUNITY
INTEGRATIONS AND FEEDBACK FOR
WORK WE DO AND WHAT NIH IS
THINKING ABOUT DOG AS WELL.
NEXT SLIDE. TO GIVE YOU BROAD
OVERVIEW WHAT WE HEARD FROM
CONVERSATIONS, AGAIN, FOCUSED ON
NEW TYPES OF ANALYSIS INCLUDED
SUPPORT FOR AI BUT DEPENDED ON
DEMONSTRATED RELIABILITY OF THE
ALGORITHMS AND IF -- IF THE
ALGORITHMS WERE IN FACT
RELIABLE, PARTICIPANTS WERE
EXCITED ABOUT SHARING DATA TO
RECEIVE ACCURATE DIAGNOSES AND
BETTER CARE TO ADDRESS HEALTH
ISSUES AND TRUSTING DECISIONS OF
HUMAN DOCTORS MORE AND WE WILL
TALK ABOUT AND YOU WILL HEAR
THEMES WE HEARD IN PANEL 1 COME
UP AGAIN IN PANEL 2. THIS TRUST
IS BASED ON LONGSTANDING
RELATIONSHIPS PARTICIPANTS ARE
AWARE OF POSSIBILITY OF BIAS AND
MISUSE OF ALGORITHMS AND STIGMA
AND HOW ELSE DATA AND ALGORITHMS
MIGHT BE USED AND WANT TO POINT
OUT MOST CONVERSATIONS HAPPENED
IN ADVANCE OF TREMENDOUS
EXPLOSION OF FOCUS ON AI AND
PARTICULARLY CHATGPT THAT
HAPPENED IN THE LAST FEW MONTHS
AND KEEP THAT IN MIND GOING
THROUGH THIS PANEL.
AS BEFORE WE WILL START WITH
REFLECTIONS FROM THE PANELISTS
WHAT THEY HEARD FROM COMMUNITY
CONVERSATIONS WHAT INITIAL
RESPONSES ARE TO THAT AND WOULD
LIKE TO START FIRST WITH MONICA.
IF YOU CAN TALK A BIT ABOUT WHAT
YOUR KEY TAKEAWAYS FROM THESE
CONVERSATIONS FROM YOUR
PERSPECTIVE AS A FACILITATOR.
>>THANKS SO MUCH AND FOR THE
OPPORTUNITY TO COME AND REALLY
BRING FORTH COMMENTS AND
REFLECTIONS AND PERSPECTIVE OF
THE COMMUNITY.
THEY ARE GRATEFUL TO BE PART OF
THIS PROCESS. WE TALKED ABOUT
TRUST AND IDEA OF
TRUSTWORTHINESS AND WANT TO SAY
ONE OF THE TAKEAWAYS THAT I HAD
WAS THAT TRUST IS ABOUT
RELATIONSHIPS AND ABOUT WHO IS
INVOLVED IN DESIGNING ALGORITHMS
AND SPECIFIC TOPICS AND WHO IS
ACTUALLY ANALYZING DATA AND FOR
-- YOU KNOW, WHEN YOU GET INTO
REAL SPECIFICS IN RESPECT TO
SCANNING FOR CERTAIN WORDS IS IT
CULTURALLY ADAPTED AND HUMOR
TAKING INTO ACCOUNT AND AS WELL
AS WHO IS SHARING BACK RESULT
WLZ RESEARCHER OR PHYSICIAN OR
SPECIALIST, ET CETERA, THOSE ARE
REALLY IMPORTANT PIECES.
AGAIN, THINKING ABOUT TRUST AS
THESE DIFFERENT TYPES OF
RELATIONSHIPS AND WHO HAS
CONTROL OF DATA DOWNSTREAM. WE
KNOW AND I THINK THAT THE
PARTICIPANTS REALLY UNDERSTOOD
THAT TECH WILL CONTINUE TO
DEVELOP OPPORTUNITIES WILL
CONTINUE TO DEVELOP AND LIKEWISE
WE DON'T KNOW WHAT POTENTIAL FOR
RISKS ARE.
THAT IS THE CONCERN AND PIECE
THAT WE COMMENT ON AND WHAT IS
ABOUT THAT PIECE OF RELIABILITY
AND ACCURACY AND COMING TO
SOCIAL MEDIA ONE THING TO
CONSIDER IS INDIVIDUALS AND
PARTICIPANTS AND COMMUNITY
MEMBERS ARE FAMILIAR WITH THEIR
USAGE OF SOCIAL MEDIA. I DON'T
MEAN THE ASPECT OF HOW IT IS
DISSEMINATED OR SHARED AND THEIR
-- WHETHER THEY SHARE ACCURATE
INFORMATION OR WHETHER
INFORMATION THEY READ ABOUT
THEIR YOU KNOW FRIENDS AND
FAMILY IS RELIABLE.
BECAUSE THEY HAVE AN
UNDERSTANDING FOR USAGE OF IT, I
THINK THAT THERE IS PERSPECTIVE
OR BELIEF FOR USING IT FOR
HEALTH OR DATA PURPOSES IS NOT
RELIABLE OR ACCURATE AND WILL
LEAVE IT AT THAT AS WE GET
STARTED.
>>THANK YOU SO MUCH. I WANT TO
EMPHASIZE YOUR POINT OF TRUST WE
KNOW FROM BIOETHICS LITERATURE
THAT THE MOST IMPORTANT THING
ABOUT WHETHER OR NOT SOMEBODY IS
GOING TO CONSENT TO A STUDY IS
IF THEY TRUST THE PERSON WHO IS
ASKING THEM TO CONSENT.
SO, WE REALLY NEED TO THINK HARD
ABOUT WHAT THAT LOOKS LIKE. AND
WHO IS CONDUCTING RESEARCH.
NEXT, MILDRED, CAN YOU TALK
ABOUT WHAT YOU GOT OUT OF THE
DATA IT THAT YOU SAW?
>>ACTUALLY, I SAW -- MAYBE I
WILL TAKE THIS OPPORTUNITY TO
TALK A LITTLE ABOUT CONTEX
CONTEXTUALIZING PROCESS MORE
THAN DATA THEMSELVES AND I
COMPLETELY AGREE THAT IS MY
IMPRESSIONS WHAT YOU SAID.
IN TERMS OF PROCESS, IT MIGHT BE
IMPORTANT TO UNDERSTAND THIS IS
AN ACTIVITY HOSTED BY NIH AND
THEIR FOCUS IS RIGHTLY ON
NIH-FUNDED RESEARCH AND
NIH-FUNDED RESEARCHERS AND WE
HAVE TO ALSO BE MINDFUL HOW THAT
RESEARCH IS NOT OCCURRING IN A
LITTLE GLASS BUBBLE THAT IS
OCCURRING IN THE WIDER WORLD.
THERE IS THREE CONTEXTUAL
FEATURES TO KEEP IN MIND AS WE
THINK ABOUT THIS SORT OF DATA.
FANTASTIC DATA, BY THE WAY FIRST
BIOMEDICAL RESEARCH IN THE
COUNTRY IS NOT DONE BY THE
GOVERNMENT BUT MOST BY INDUSTRY
AND A LOT AND TRUSTWORTHY
SCIENCE IS DONE BY GOVERNMENT
RESEARCHERS AND WHOLE ACTIVITY
OF BIOMEDICAL RESEARCH WILL BE
HEAVILY INFLUENCED IN PERCEPTION
AND INFLUENCED BY RESEARCH AS A
WHOLE MOST OF WHICH IS DONE BY
INDUS
INDUSTRY.
THAT IS ONE THING AND WE TALKED
ABOUT IN THE FIRST PANEL THAT
THERE ARE BLURRY LINES BETWEEN
RESEARCH AND OTHER ACTIVITIES
CLINICAL PRACTICE AND TECH AND
ENGINEERING AND OTHER THINGS
THAT IS HARD TO DRAW LINES AND
WHY THAT IS IMPORTANT IS
BECAUSE, ONE, THERE IS DIFFERENT
REGULATORY SYSTEMS AND OVERSIGHT
FOR ALL THOSE DIFFERENT
ACTIVITIES BASED ON WHETHER YOU
CLASSIFY IT AS RESEARCH OR HUMAN
SUBJECTS RESEARCH OR NOT HUMAN
SUBJECTS RESEARCH AND CLINICAL
PRACTICE AND ENGINEERING AND
THERE IS DIFFERENT MORAL
FRAMEWORKS AND PROFESSIONAL
GUIDELINES AND SO FORTH. HOW
YOU CLASSIFY THE ACTIVITY IS
IMPORTANT IN A POLICY SENSE.
STUFF THAT WE ARE TALKING ABOUT
IS REALLY NOT CLEAR WHAT BIN TO
PUT IT IN.
THE OTHER REASON WHY THAT IS
IMPORTANT IS BECAUSE IT IS IN
THIS SORT OF INTERDISCIPLINARY
SPACE.
AGAIN, YOU HAVE DIFFERENT ACTORS
AND DIFFERENT STAKEHOLDERS AND
YOU HAVE COMPUTER SCIENTISTS AND
SOFTWARE ENGINEERS AND
CLINICIANS AND DIFFERENT PEOPLE
COMING FROM DIFFERENT MORAL
TRADITIONS AND FRAMEWORKS THAT
RUN AWARE OF OTHER FRAMEWORKS IN
WHICH THEY ARE OPERATING; RIGHT?
OR REGULATIONS AND THAT SORT OF
THING.
LAST THING IS OTHER CONTEXTUAL
FEATURE IS WE ARE OPERATING IN
THIS SPACE WHERE ACTIVITY OF
RESEARCH IS NOW BEING DONE NOT
ONLY BY SORT OF PROFESSIONAL
SCIENTISTS; RIGHT?
THERE IS CITIZEN SCIENCE AND
COMMUNITY PARTNERS AND THAT SORT
OF THING. IT IS IMPORTANT TO
THINK ABOUT THE TERM COMMUNITIES
WHEN USING COMMUNITIES WHAT WE
MEAN BY THAT AND SHOULDN'T THINK
OF IT ONLY AS DATA SOURCES AND
USING TERM COMMUNITY WHAT WE ARE
REALLY OFTEN TALKING ABOUT IS
PEOPLE WE WANT TO GET DATA FROM.
I URNL US TO THINK ABOUT
RESEARCHER AND COMPANIES AND
STAKEHOLDERS AS WELL AND
COMMUNITIES HAVE TO BE IN DIRECT
CONVERSATIONS WITH EACH OTHER
NOT HAVING FILTERED
CONVERSATIONS CONTROLLING FLOW
OF INFORMATION BETWEEN ALL THOSE
COMMUNITIES. I WILL STOP THERE.
>>THANK YOU SO MUCH. LOTS OF
CONVERSATION IN 90 MINUTES ABOUT
CONTEXT OF ACADEMIA, GOVERNMENT
AND INYOU DUSTRY AND RULE SETS
AND NORMS IN DIFFERENT SPACES
AND HOW THEY DO OR DO NOT
INCENTIVIZE THE RIGHT KIND OF
BEHAVIOR AND WANT TO ALSO SPEND
OR ENSURE THAT WE KEEP COMING
BACK TO, YOU KNOW, HOW THE NIH
SHOULD RESPOND GIVEN THIS
CONTEXT; RIGHT?
>>RIGHT.
>>THIS DAY IS ABOUT TAKING DATA
AND INFORMATION AND
CONVERSATIONS WE HAVE HAD IN THE
LAST SEVERAL MONTHS WITH
DIFFERENT COMMUNITIES AND
DIFFERENT INDIVIDUALS AND
DIFFERENT COMMUNITIES AND TRYING
TO TRANSLATE THAT INTO POLICY
AND PRACTICE; RIGHT?
HOW WILL WE TAKE THESE
CONVERSATIONS AND HELP THEM
INFORM WHAT WE DO GOING FORWARD
GIVEN THIS BROADER CONTEXT OF
RESEARCH DONE IN THIS INDUSTRY.
THANK YOU.
>>WONDERFUL. THANKS SO MUCH.
REAL PLEASURE. I WANT TO FIRST
CLARIFY MY CURRENT AFFILIATION
IS ON FACULTY OF HARVARD NOT
CURRENTLY ON BIOETHICS AND AT
GOOGLE DIRECTOR OF BIOETHICS AND
TRUST AND VA NATIONAL CENTER FOR
ETHICS AND RULES THERE AND NOT
CURRENTLY IN THAT POSITION AT
HARVARD AND WANT TO CLARIFY
THAT.
SO, I WANT TO BEGIN BY
REFLECTING ON HOW IMPRESSED I
WAS WITH WAYS IN WHICH
PARTICIPANTS IN FOCUS GROUPS
WERE ABLE TO HIGHLIGHT AND
RECOGN
RECOGNIZE.
KEY ETHICAL CHALLENGES IN THIS
SPACE TO CALL OUT IMPORTANCE OF
TRUST THAT AS YOU SAY IS RELATED
TO RELATIONSHIPS, MONICA. WHEN
WE THINK ABOUT WHAT MILDRED SAID
IN TERMS OF FACT THAT MOST
RESEARCH IS DONE BY INDUSTRY AND
THAT RESEARCH PARTICIPANTS DON'T
HAVE RELATIONSHIPS WITH INDUSTRY
IN WAY THEY DO WITH THEIR HEALTH
CARE P PROVIDER IT POSES
OPPORTUNITIES, LET'S SAY, FOR
HOW TO THINK ABOUT TRUST AND GET
AT DIMENSIONS OF TRUST AND YOU
MIGHT BE AWARE FOR EXAMPLE OF
GREAT EMPIRICAL WORK DONE BY
EDLEMAN WHO DOES A TRUST BAR AM
TER AND EMPIRICAL RESEARCH
HIGHLIGHTS INCOMPETENCE THAT
PARTICIPANTS IN FOCUS GROUPS
IDENTIFIED LANGUAGE OF
RELIABILITY THAT IS IN MANY WAYS
ANALOGOUS TO CONCEPT OF THIS AND
EDELMAN POINTED OUT IDEA OF
BENEVOLENCE AND BEST INTEREST OF
SHARING DATA AND TALKING ABOUT
RECIPROCITY AND BENEFIT OF
INTEGRITY AND ARE THREE PRIMARY
DRIVERS OF TRUST.
I THINK OTHER THING WE SAW FROM
DATA IS HOW ENTWINED
RELATIONSHIPS AND CONCEPTS OF
AGENCY IS MEANING CONTROL OVER
THE DATA AND TRANSPARENCY AND
NEED FOR US TO DIVE DEEPER IN
TERMS OF DIVING DEEPER INTO
MEANING OF CONCEPTS AND HOW WE
OPERATIONALIZE TRANSPARENCY AND
TALKING ABOUT RELIABILITY, WE
NEED TO NOT ONLY THINK ABOUT
RELIABILITY OF A PARTICULAR
OUTPUT OF ALGORITHM BUT OF A
SYSTEM AND WHEN THINKING OF
INTEGRATION OF MACHINE LEARNING
AND AI AND HEALTH CARE IT IS NOT
JUST ABOUT OUTPUT OF A
PARTICULAR MODEL BUT ALL OF THE
DIFFERENT OR GOVERNANCE
STRUCTURES FOR DECIDING WHAT
ALGORITHMS WILL BE PUT INTO
PLACE. WHAT IS THE OVERSIGHT
MECHANISM OF THAT AI AND IN A
HEALTH CARE SETTING AND WHAT IS
DATA THAT WAS USED TO TRAIN THE
MODELS AND DO WE HAVE CLARITY ON
THE REPRESENTATION OF THAT DATA
TO ENSURE BENEFITS OF MACHINE
LEARNING AND AI WILL DIVOFL TO A
DIVERSE GROUP OF PARTICIPANTS
AND THINKING OF CLINICIANS IN
THIS SPACE AND PARTICIPANTS IN
FOCUS GROUPS HAD GREATER RISK
WITH CLINICIANS AND CLINICIANS
BECOMING RELIANT ON OUTPUT OF AI
ALGORITHM WE MIGHT ENCOUNTER
WHAT I CALL DESKILL IING THEY M
NOT APPROACH OUTCOME OF MODEL
AND OVER-RELIANCE ON AI OUTPUT
AND USING CLINICAL JUDGMENT AND
QUESTIONING IN WAY THAT THEY
NEED TO BE TO ENSURE THAT IT IS
BENEFICIAL TO PATIENTS AND THIS
IS A COMPLICATED SPACE DOING
RESPONSIBLY INTEGRATING AI AND
MACHINE LEARNING INTO SYSTEM AND
LEVERAGING BENEFITS OF DATA WE
HAVE TO THINK ABOUT THE ENTIRE
SYSTEM.
MAYBE I WILL PAUSE THERE AND
LOOKING FORWARD TO MANY
DIMENSIONS OF WORK THAT CAME OUT
OF THIS.
>>FANTASTIC. THANKS SO MUCH
PULLING ON TWO THREADS COMPUTER
SCIENTISTS DOING THIS WORK IN
INDUSTRY DESIGNING ALGORITHMS;
RIGHT?
THEY ARE NOT NECESSARILY
FAMILIAR WITH IRBS.
THEY ARE NOT TRAIN TODAY THINK
OF HUMAN SUBJECTS RESEARCH AND
ARE NOT FAMILIAR WITH NORMS THAT
SURROUND THAT WORK BUT LARGELY
ARE ONES DOING THE WORK.
>>I CAN ADD A COMMENT TO THAT
AND HOPE WE CAN TALK ABOUT
IMPLICATIONS OF FOR THIS FOR
POLICY.
>>YEAH.
>>SERIES OF THOUGHTS ON THAT
HIGHLIGHTING TWO THINGS RELATE
TODAY WHAT YOU SAID.
YOU ARE SPOT ON IN EXPERIENCE
WORKING IN INDUSTRY IN COMPANY
LARGELY DRIVEN BY ENGINEERS THAT
YOUR DESCRIPTION IS ACCURATE AND
ENGINEERS WANT TO KNOW WHAT TO
DO WITH AND ARE IN MY EXPERIENCE
EXTREMELY RECEPTIVE TO GUIDANCE
AND SUGGESTIONS HOW TO IMBED
ETHICS INTO THE WORK.
CHALLENGE IS I THINK WE NEED IRB
AND ANALOGY TO CLINICAL TRIALS
IN RESEARCH IN CLINICAL SETTINGS
IS HELPFUL IN THIS SPACE AND WE
NEED A RESEARCH REVIEW COMMITTEE
FOR AI OR IRBS TO DEVELOP THAT
SPECIAL EXPERTISE TO ANALYZE
THIS DATA AND RELATE TODAY THAT
COLLEAGUE MARY GRAY AN EDGE CYST
AT MICROSOFT WE HAVE PUT FORWARD
THIS IDEA OF WE NEED A BELL MONT
2.0 FOR SPACE IN HEALTH CARE
TAKING BELL MONT REPORT THE
FOUNDATION FOR RESEARCH ETHICS
IN THIS COUNTRY AND AROUND THE
WORLD EVEN AND THINKING ABOUT
UNIQUE CHALLENGES THAT SPACE OF
AI PRESENTS TO US AND DO WE HAVE
TO THINK ABOUT A NEW PARADIGM TO
HELP INFORM AND PROVIDE
STRUCTURE FOR THINKING ABOUT
ETHICS OF AI AND MACHINE
LEARNING AND HEALTH CARE.
>>GREAT. THANK YOU.
ONE THING TO SAY AGAIN TO SET UP
BEFORE WE MOVE TO JAY IS I
COMPLETELY AGREE WITH YOU THAT
THE COMMUNITY FOLKS WE TALK TO
HIGHLIGHTED ETHICAL PRINCIPLES
EVERYONE TALKS ABOUT IN AI AND
INFORMATION TO DIG DEEPER IN
TRANSPARENCY AND WE DEFINE IT
DIFFERENTLY THINKING IT ADHERES
TO DIFFERENT PEOPLE AND
DIFFERENT PEOPLE ARE RESPONSIBLE
FOR WHATEVER THIS THING WE CALL
TRANSPARENCY IS. WITH THAT
TURNING TO JAY.
>>THANK YOU, DEBRA. I TOO WANT
TO THANK EVERYONE FOR SETTING
THIS UP AND DOG INCREDIBLE WORK
AND INCLUDING ME.
NICE THING ABOUT THIS PANEL IS
STUFF ALREADY SAID AND
AMPLIFYING A COUPLE AND SOME
MORE AND AMPLIFYING THOUGHTS
THAT ARE PRESENTED AND I TOO WAS
IMPRESSED BY RESPONSES OF
COMMUNITY RESPONSES AND THEY
MADE GREAT SENSE AND HAD RIGHT
PRIORITIES PARTICULARLY AROUND
TOPICS OF TRUST AND PRIVACY AS
OVERARCHING ISSUES AND CONCERNS
THAT ARE QUESTIONABLY TWO
IMPORTANT ISSUES NEEDING TO BE
DEALT WITH. IMPLICIT IN
COMMENTS AROUND TRUSTING HUMAN
MORE THAN AI. I THINK THERE WAS
AN APPROPRIATE CONCERN ABOUT
WHETHER THE ANSWER FROM AN AI IS
CORRECT. THAT IS A CENTRAL
ISSUE TO COME BACK TO IN A
MOMENT. LISA ALREADY ELUDED TO
THERE IS ALSO THE CONCERN ABOUT
POTENTIAL BIAS PARTICULARLY
DEPENDING WHAT DATA SET USED FOR
TRAINING IS ABOUT AND ADDITIONAL
THOUGHTS AND ADDITIONS YOU HEARD
AND I HAVE FURTHER THOUGHTS IN
RESPONSE TO QUESTION 2. I WILL
TELL YOU FOUR THINGS FIRST THAT
I'M CONCERNED ABOUT. FIRST, IT
IS EASY FOR AI TO GET THE WRONG
ANSWER. AND NOT KNOW IT AND
NEITHER THE USER. AI LIES AS
CONVINCINGLY AS IT TELLS THE
TRUTH. IT DOESN'T KNOW WHICH IS
WHICH. NO. 2, FURTHER, THERE
HAVE BEEN SEVERAL EXAMPLES THAT
WE SALUTED TO THIS TOO EXAMPLE
OF SCIENTIFIC LITERATURE OF
DISCOVERY OF UNINTENDED AND
UNKNOWN BIAS OF STUDIES OF DATA
AND IMPLICATION OF AI-ENABLED
CONCLUSIONS OF RESEARCH STUDIES.
NO. 3, TOPIC OF DATA HAS TO BE
CENTRAL TO THE DISCUSSION.
MORE TO SAY ABOUT IT IN A
MOMENT. I DIDN'T HAD HEAR FROM
PARTICIPANTS ABOUT THAT SG.
4TH, TIMING IS EVERYTHING AND
CAME AFTER SESSIONS AND CHATGPT
HAS GONE VIRAL. IT WILL TEACH
US MANY, MANY THINGS IN COMING
MONTHS AND YEARS. IN FACT, IT
ALREADY HAS.
IN AREA OF SURPRISE, I WAS
SURPRISED THERE DIDN'T SEEM TO
BE MORE FOCUS OR INTEREST ON
DATA IN ADDITION TO ALGORITHMS
AND GARBAGE IN AND GARBAGE OUT
WE KNOW. DATA RELIABILITY AND
PROBE ANANCE ARE HUGE ISSUES
THAT ARE IMPORTANT HERE AND NOT
TO MENTION ISSUES OF OWNER
DATASHIP AND PERMISSIONSHIP AND
HOT ISSUES WE TALKED ABOUT
CONSENT AND WHO OWNS DATA.
THERE IS ISSUES OF SCALE AND NOT
JUST IN THE RESEARCH STUDIES BUT
ALSO IN APPLICATION OF THIS
APPROACH TO COMMUNITY RESPONSES
AND HOPE WE WILL TALK ABOUT THAT
MORE IN THE FURTHER DISCUSSION
AND I DIDN'T SEE MUCH DISCUSSION
OF VARIOUS SECTORS CONTRIBUTING
TO TECHNOLOGY AND INNOVATION IN
THE FUTURE AND LOVE MILDRED'S
WORD THAT I WILL HAVE A HARD
TIME PRONOUNCING BUT
CONTEXTUALIZING PROCESS THAT IS
ALL ABOUT THE DIFFERENT
COMPONENTS OF THE ECOSYSTEM THAT
PARTICIPATE IN RESEARCH AND FACT
THAT THE PRIVATE SECTOR INDUSTRY
FOR PROFIT INDUSTRY IS NOW
ECLIPSING THE AMOUNT OF RESEARCH
THAT IS DONE DOMESTICALLY IN THE
US AND REMINDING EVERYBODY
INTERNATIONALLY THAT IS BECOMING
A BIGGER AND BIGGER DRIVER OF
THESE RESEARCH PROBLEMS ACROSS
THE GLOBE AND CAN'T IGNORE IT OR
ALLOW IT TO GO ON WITHOUT OUR
THINKING ABOUT IT.
NEXT, I WOULD HOPE FOR MORE
PUBLIC INPUT ON GOVERNANCE
QUESTIONS AND WHO MAKES
IMPORTANT DECISIONS FOR THE
FUTURE IF ANYONE AND HOW.
IF WE DON'T, WHAT IS THE
DEFAULT?
FINALLY, I THINK THAT WE MUST
NEVER UNDERESTIMATE IMPORTANCE
OF UNEXPECTED SURPRISE.
TECHNOLOGY BREAKTHROUGHS LEADING
TO ENORMOUS IMPACTS HAVE OFTEN
COME SUDDENLY UNEXPECTEDLY AND
FROM PLACES WE HAVEN'T PAID MUCH
ATTENTION TO AND WITH
UNANTICIPATED CONSEQUENCES AND
SO I DON'T HAVE TO REMIND THIS
AUDIENCE, FOR EXAMPLE, OF THINGS
LIKE THE INTERNET AND
SMARTPHONES AND RECENTLY ROLE OF
SOCIAL MEDIA IN MISS AND
DISINFORMATION.
NONE OF THAT WAS PLANNED FROM
OUR PERSPECTIVE.
NOT TO MENTION COVID.
SO, WHAT, WHEN AND FROM WHERE IS
NEXT QUITE POSSIBLE WILL I IS
SOMETHING COMPLETELY DIFFERENT
FROM ANYTHING WE ARE DISCUSSING
HERE TODAY AND WOULD ENCOURAGE
US TO HAVE ALSO A STRONG DOSE OF
HUMILITY.
THANK YOU.
>>FER FIBBING. THANK YOU SO
MUCH. APPRECIATE COMMENT ABOUT
DATA AND CONVERSATION WITH
PARTICULARLY SOCIAL MEDIA POSTS;
RIGHT?
AND RELIABILITY OF WHAT IS
POSTED ON SOCIAL MEDIA AND
MONICA ELUDED TO THIS EARLIER.
BUT THE MEDICAL DATA WE DIDN'T
HAVE CONVERSATIONS ABOUT EHR OR
ELECTRONIC MEDICAL RECORD DATA;
RIGHT?
HOW RELIABLE IS THE DATA AND WHO
IS THE POPULATION OF FOLKS IN
DATA?
VERY MUCH NOTED AND COMMENTS
ABOUT CHATGPT WE TALKED ABOUT
THIS BEFORE AND GIVEN
CONVERSATION WE HAD OCCURRED TO
ME WHAT WOULD PUBLIC ENGAGEMENT
HAVE LOOKED LIKE FOR CHATGPT AND
MICROSOFT IS SAYING THAT THIS
FIRST SORT OF FOR AN OF LETTING
BING SEARCH ENGINE GO OUT TO
1,000 OR SO SELECTED FOLKS WAS
AN EFFORT TESTING THE SOFTWARE
BEFORE LETTING IT OUT IN THE
WILD. IT HAS BEEN AN
INTERESTING EXPERIMENT AND GOING
BACK TO WHAT WE HEARD FROM THE
CONVERSATIONS AND THAT MONICA
AND HER COLLEAGUES RAN FOR US, I
MEAN, DID THOSE -- WHAT YOU READ
OF THOSE CONVERSATIONS, DID THEY
SORT OF RESONATE WITH WHAT YOU
HAVE HEARD FROM PARTICIPANTS IN
YOUR RESEARCH OR CONSUMERS
DURING YOUR TIME IN INDUSTRY OR
MEMBERS OF THE GOVERNMENT THAT
YOU INTERFACED WITH IN TALKING
ABOUT THESE KINDS OF
TECHNOLOGIES AND MAYBE WE WILL
GO TO MILDRED FIRST FOR THIS
ONE.
>>YEAH. I HAVE DONE A LOT OF
PATIENT HEALTH SYSTEMS ABOUT USE
OF DATA AND EVERYTHING THAT I
THINK WAS BROUGHT OUT IN THESE
SCENARIOS.
IT WAS VERY MUCH ECHOED THERE.
ONE THING THAT MADE ME THINK
ABOUT WAS HOW WE MIGHT AND MAYBE
THIS IS JUMPING AHEAD A LITTLE
BIT IN TERMS HOW TO INTEGRATE
THAT BACK; RIGHT? AND CREATING
A PROCESS WHERE IT GETS DIRECTLY
FED BACK INTO AS RUPA SAYS AND
JEN SAID IN THE FIRST PANEL
ABOUT HOW YOU GET THAT BACK INTO
THE DESIGN PROCESS VERY EARLY
ON.
I THINK THAT -- I ALSO HAVE DONE
FOCUS GROUPS WITH AI DEVELOPERS
USING OR WORKING IN THE HEALTH
CARE SPACE. THEY WOULD HAVE
VERY MUCH LIKED TO HEAR THESE
RESULTS AND THEY DON'T GET A
CHANCE TO DO THAT EVER.
NOT ONLY ARE THEY NOT FAMILIAR
WITH THINGS LIKE IRBS OR THAT
SORT OF THING BUT ALSO DON'T
HAVE A PERSPECTIVE FROM THE
PATIENT PERSPECTIVE OR THE --
YOU KNOW, JUST THE GENERAL
PUBLIC'S PERSPECTIVE OF USERS
NOT LIKE THEMSELVES AND SO ONE
OF THE THINGS THAT I THINK THAT
WE DID HERE IN CONVERSATIONS WE
HAD WITH DEVELOPERS IS THAT
WHILE SOME MIGHT BE RECEPTIVE TO
SORT OF LEARNING MORE OTHERS ARE
NOT CERTAIN IT IS ACTUALLY THEIR
RESPONSIBILITY AND I THINK THAT
ONE OF THE THINGS THAT I WOULD
LIKE TO SEE IS TO SORT OF TRY TO
UNDERSTAND HOW TO FOSTER A SENSE
OF -- FOSTER CULTURE IN WHICH
PEOPLE ARE WILLING TO TAKE
RESULTS OF THESE COMMUNITY
ENGAGEMENTS AND USE IT TO SORT
OF PUT THEMSELVES IN THE PLACE
OF THOSE PEOPLE.
AND TO THINK ABOUT HOW THAT
MIGHT CHANGE HOW THEY ARE
THINKING ABOUT DESIGNS AND FOR
DATA COLLECTION AND DATA USE.
>>IT IS INTERESTING YOU ARE
SAYING THIS THING ABOUT
RESPONSIBILITY. IT IS NOT JUST
-- ONE ISSUE, AGAIN, THIS IDEA
OF TRUST IS BEING PART OF THE
PROCESS AND WE TALKED ABOUT THE
DESIGN COMPONENT AND ALSO, YOU
KNOW, WHEN IT COMES TO WHO IS
CREATING AI TECHNOLOGY, ET
CETERA, IF INDUSTRY, IT IS NOT
JUST RESPONSIBILITY BUT ALSO I
THINK PARTICIPANTS AND COMMUNITY
MEMBERS COME FROM IF YOU MAKE
MONEY OFF THIS WHERE IS TAKING
THE POT AND MY DATA YOU ARE
PROVE RITYINGING FROM IS NOT
JUST PIECE BUT MAKING THE
FINANCIAL BURDEN MAKING SURE
THERE IS APPROPRIATE
COMPENSATION THAT IS PART OF THE
TRUST EQUATION IS, YOU KNOW, IS
THE VISIBILITY AND THE
TRANSPARENCY OF I WILL TAKE THIS
INFORMATION FROM YOU. I WILL
MAKE A PRODUCT AND MAKE A LOT OF
MONEY OUT OF IT.
AND WHETHER OR NOT THAT IS --
YOU KNOW, THAT IS SOMETHING THAT
IS SHARED UP FRONT. I THOUGHT
IT WAS TO ADD TO THAT
RESPONSIBILITY PIECE WE HAVE TO
INCLUDE THE MONETARY PIECE AS
WELL THAT IS IMPORTANT TO
COMMUNITY MEMBERS.
>>I THINK THAT WAY THAT LOTS
INSTITUTIONS HAVE RESPONDED TO
THAT IS TO ADD A LINE TO THE
CONSENT FORM THAT IS SAYING THIS
MIGHT BE USED TO MAKE A
COMMERCIAL PRODUCT. YOU WON'T
SEE ANY BENEFIT OR WILL NOT SEE
MONEY FROM THAT.
I THINK THAT YOUR COMMENTS BRING
UP -- FIRST OF ALL, TO THE
DEVELOPERS, RIGHT?
ETHICS WILL BE BAKED IN. THE
QUESTION IS WHETHER IT IS
EXPLICIT OR NOT; RIGHT?
AND WHOSE ETHICAL PRINCIPLES IT
IS. WE ARE ALSO AS THE FIRST
PANEL WAS WRESTLING WITH SORT OF
STRUCTURAL ISSUES AND AS I THINK
JEN SAID, WE HAVE TO HAVE -- WE
HAVE TO RETHINK THIS PROCESS IF
WE ARE GOING TO RESPOND TO KINDS
OF ENGAGEMENTS IN WAYS THAT
FACILITATES THE BUILDING OF
LONGITUDINAL RELATIONSHIPS.
AND THAT DOESN'T -- THAT PUTS
ENGAGEMENT FIRST IF IN THE
PROCESS AS OPPOSED TO LAST IN
THE PROCESS.
RIGHT?
IT IS NOT THE WAY WHICH WE
GENERALLY DO SCIENCE. LISA, I
THINK YOU WANTED TO --
>>YES. A FEW REFLECTIONS OR
COMME
COMMENTS.
THINKING ABOUT CONCEPT OF
RESPONSIBILITY AND THINKING OF
TECHNOLOGY AND STEPS GETTING TO
OUTPUT OF ALGORITHM THAT WILL
BENEFIT PATIENTS IN TERMS OF
EARLY DIAGNOSIS DECISION MAKING
AND WHICH THERAPY IS BET FOR
THAT PARTICULAR PATIENT AND
IDENTIFYING DISEASES EARLY SO
THAT THEY CAN BE ACTED ON AND
ALL THOSE OR TREMENDOUS -- THERE
IS NO QUESTION THAT IN MY MIND
AI IS HERE. THERE WILL BE
TREMENDOUS BENEFIT AND
TRANSFORMATION IN HEALTH CARE AS
A RESULT OF AI. I THINK THAT
SCIENCE HAS GOTTEN AHEAD OR
TECHNOLOGY HAS GOTTEN AHEAD OF
ETHICS IT THAT IS IMPORTANT TO
UNDERSTAND HOW TECHNOLOGY WORKS
AND ANSWERING QUESTION WHO IS
RESPONSIBLE AND WHAT ARE
DIFFERENT TYPES OF
RESPONSIBILITY AT DIFFERENT
POINTS IN DEVELOPMENT AND
MEANING BY THAT AND TAKING FOR
EXAMPLE WHAT LARGE INDUSTRY OR
LARGE TECH COMPANIES ARE DOING
IN SPACE OF AI AND IN MANY CASES
THEY DEVELOP PLATFORMS AND TOOLS
AND INFRASTRUCTURE THAT IS FOR
HEALTH CARE SYSTEMS IF WE STICK
TO THE HEALTH CARE SPACE AND
HEALTH CARE SYSTEMS TO TRAIN
THEIR OWN DATA ON THAT
TECHNOLOGY LEVERAGING INSIGHTS
FOR PARTICULAR POPULATIONS AND
IN MANY WAYS THOSE TECH
COMPANIES FEEL THEY ARE SOMEWHAT
REMOVED FROM THE DIRECT
RESPONSIBILITY TO PATIENTS.
THEY ARE PROVIDING A PLATFORM
THAT IS ESSENTIAL FOR ESSENTIAL
TRAINING DATA TO BE USED TO
DEVELOP ALGORITHMS THAT WILL BE
SPECIFIC TO A PARTICULAR PATIENT
POPULATION AND THINK THIS IS
ACTUALLY A FAIRLY COMPLEX
QUESTION WHAT IS THE
RESPONSIBILITY AT DIFFERENT
LEVELS; RIGHT?
THERE IS A CONCEPT OF AUTO
MACHINE LEARNING BECAUSE YOU
HAVE A PLATFORM THAT IS VERY
DIFFERENT TO HEALTH CARE SYSTEM
INTEGRATING DATA FOR PARTICULAR
PATIENT EXPLANATION AND HAVING
OUTPUT FOR THAT POPULATION AND
THAT IS ONE COMMENT THAT I THINK
IS -- POINTS TO COMPLEXITY HERE.
SECOND COMMENT HERE I WANT TO
MAKE IS RELATE TODAY MONICA AND
WHAT YOU SAY ABOUT PAYMENT AND
MONETARY COMPONENT OF IT.
I FIND THAT INTERESTING TALKING
ABOUT DEVELOP IING.
>>THEY HAVE STAKE IN IT AND
USING THEIR DATA. NOT SURE THAT
IS THE SOLUTION AND IT BECOMES
HA RD TO OPERATIONALIZE THAT. I
WONDER ABOUT THE ABILITY. ARE
WE MISSING.
THERE IS A BALANCING ACT HERE.
IT IS NOT CLEAR TO ME. WE HAVE
TO HAVE A SOCIETAL CONVERSATION
ABOUT THIS. AND UNDERSTAND
PEOPLE'S PERSPECTIVES.
SOMETIMES WHEN YOU HAVE A
COMMERCIAL PRODUCT, THERE IS
ACTUALLY -- MAY BE GREATER
INVESTMENT TO SUSTAIN PRODUCT
AND IMPROVE THAT PRODUCT AND
REALIZE BENEFITS OF PRODUCT FOR
PEOPLE.
IT IS NOT SO CLEAR COMMERCIAL
PRODUCT IS ALWAYS AT ODDS WITH
BEST INTEREST OF THE POPULATION.
>>NOT SO CLEAR IS PART OF THE
TRANSPARENCY; RIGHT?
IF PUBLIC DOESN'T UNDERSTAND
WHAT IT TAKES TO SUPPORT AND
SUSTAIN A PRODUCT FOR PUBLIC
BENEFIT, THAT IS PART OF THE
PROBLEM IS THAT THERE IS NO
UNDERSTANDING ON THAT PIECE. I
THINK THAT PARTICIPANTS REALLY
HAD -- YOU KNOW, IT WAS A VERY
EDUCATED CONVERSATION IN SENSE
THERE WAS A REAL INTEREST IN
UNDERSTANDING THAT, YOU KNOW,
DIFFERENT COMPONENTS GOING INTO
AI. IT WASN'T JUST, YOU KNOW, I
THINK THEY WANTED TO UNDERSTAND
SAMPLE SIZE AND DEMOGRAPHICS AND
THERE WERE VERY SPECIFIC THINGS
THEY ASKED FOR AND FOR CERTAIN
POPULATIONS, YOU KNOW, I THINK
THAT WHO OUR -- MAYBE BECAUSE OF
SITUATIONS THEY ARE ALREADY IN
AND THEY ARE ENGAGEMENT RESEARCH
BECAUSE OF -- YOU KNOW, PERSONAL
-- FOR PERSONAL REASONS THEY ARE
ALREADY ENGAGED IN LOTS OF
RESEARCH AND THOSE POPULATIONS
THAT ARE SPECIFICALLY, YOU KNOW,
THEY ARE JUST WANTING -- YOU
KNOW, GRASPING AT WHATEVER THEY
CAN. THEY ARE IN A PLACE WHERE
THEY ARE CONSTANTLY GIVING AND
GIVING AND GIVING TO THAT COMMON
GOOD IDEA AND MOST PEOPLE DOING
RESEARCH ARE NOT DOING IT FOR
$25 INCENTIVE BUT DOING IT FOR
GREATER GOOD ALREADY AND HIGHER
VALUE SET THERE ALREADY TO BEGIN
WITH.
>>I WANTED TO ADD YOU TEED ME
UP THANKS VERY MUCH THAT
COMMENTS BENEFIT SOME OF US MORE
THAN OTHERS AND BEING REALLY
CLEAR ABOUT THAT AND DEVELOPING
STRUCTURES THAT REBALANCE;
RIGHT?
THE EXISTING BARRIERS IT THAT WE
KNOW THAT WE HAVE IN THIS
COUNTRY.
>>ABSOLUTELY. I THINK THAT
THIS POINTS TO THE IDEA THAT
THERE IS A WHOLE POPULATION OF
PATIENTS THAT I CALL
ALGORITHMICALLY UNDERSERVED THAT
NEED OUR ATTENTION.
I'M DEEPLY WORRIED ABOUT SMALLER
HEALTH CARE SYSTEMS IT THAT
DON'T HAVE THE INFRASTRUCTURE TO
DEVELOP THE -- TO DEVELOP AI AND
MACHINE LEARNING FOR BENEFIT OF
PATIENTS AND WHEREAS PLACES LIKE
HARVARD AND STANFORD AND DUKE
AND HOPKINS AND POWERED ACADEMIC
TERTIARY CENTERS MAYO IS AT THE
FOREFRONT OF LOTS OF THIS HAVE
BEEN ABLE TO DEVELOP
INFRASTRUCTURE FOR MACHINE
LEARNING AND AI TO BRING THE
TECHNOLOGY AND BENEFITS OF THE
TECHNOLOGY TO THEIR PATIENT
POPULATION. WE HAVE A
RESPONSIBILITY TO THINK ABOUT
NOT ONLY DATA POVERTY ISSUES
AMONGST SOCIO DEM GRAPHICALLY
AND RACIALLY ETHNIC POPULATIONS
THAT MIGHT BE RELUCTANT TO SHARE
THEIR DATA FOR VERY GOOD REASONS
BECAUSE OF HISTORICAL FACTS AND
HOW WE WILL PROVIDE SOME
INFRASTRUCTURE FOR THESE OTHER,
YOU KNOW, POPULATIONS AND HEALTH
CARE SYSTEMS AND PATIENTS IN
SYSTEMS. YEAH?
>>BEFORE WE GET OFF TOPIC OF
FINANCIAL INCENTIVES I WANT TO
ADD ONE COMMENT. I THINK THAT,
MONICA AS I THINK ABOUT THIS
THAT IS ONE PART OF SOMETHING
BIGGER THAT IS INTELLECTUAL
PROPERTY AND HOW IT IS HANDLED
THROUGHOUT THE INDUSTRY.
I WOULD ARGUE THINKING ABOUT
WHOSE INTELLECTUAL PROPERTY IT
IS AND WHO HAS A CLAIM ON THAT,
THAT WILL DIRECT FINANCES
FOLLOWING THAT AND THINKING OF A
FUTURE STATE AND THINKING AHEAD
ABOUT WHAT EXISTED TODAY AND
RECENTLY AND THESE TECHNOLOGIES
THAT ARE NOT GOING TO BE
ANALYTICS OPERATING ON DATA WE
HAVE TODAY.
AI TECHNOLOGIES WILL DEVELOP NEW
ANALYTICS AND THEY WILL WRITE
CODE FOR THE FUTURE.
I WILL SAY THAT AGAIN. AI WILL
ACTUALLY WRITE THE ALGORITHMS OF
THE FUTURE NOT OTHER WAY AROUND.
THAT CHANGES EVERYTHING.
WHOEVER IS RUNNING THAT AI
COMPONENT ON THAT PARTICULAR
PROBLEM IS GOING TO WANT TO LAY
CLAIM TO WHAT THE COMPUTER
CREATED AS BEING THEIRS AND
BATTLES OVER INTELLECTUAL
PROPERTY OVER FUTURE WORLD AND
DATA THAT IT SUPPLIES COMES FROM
EVERYWHERE SOMETIMES ARE NOT
EVEN KNOWING IT TALKING ABOUT
CHATGPT A MOMENT AGO GOING
ONLINE AND GOING TO WEBSITE THAT
LET'S YOU PLAY AND DO WORD GAMES
IT THAT PEOPLE ARE DOING NOW AND
THOUSANDS OF INDIVIDUALS HAVE
BEEN CROWDSOURCED IN COUPLE
MONTHS ASKING QUESTIONS GETTING
IT TO WRITE TEXT IN RESPONSE AND
WHAT IS HAPPENING IN BACKGROUND
IS ALL DATA YOU THAT YOU HAVE
CONTRIBUTING TO THE QUESTION AS
BEING SUCKED UP AND VACUUMED UP
AS IT GOES THROUGH THAT EXERCISE
AND IT THAT IS HAPPENING AT
SCALE ACROSS THE ENTIRE WORLD
AND MANL WHAT IT IS DOING FOR
DATA RESOURCES AVAILABLE TO THE
ONE THING RIGHT NOW IN
REAL-TIME.
BY THE WAY, IT IS NOT JUST
MICROSOFT BUT GOOGLE IS
EXPERIMENTING DEVELOPING THEIR
OWN TECHNOLOGY AND THERE ARE
PROBABLY TENS IF NOT MORE
START-UPS ACROSS THE GLOBE ALSO
USING SIMILAR TECHNOLOGY TO
DEVISE THEIR OWN APPROACHES TO
DOING THIS KIND OF AI FROM THE
FUTURE AND SOME WE WOULD APPLAUD
AND CONGRATULATE AND SUPPORT AND
WANT TO SEE SUCCESSFUL AND SOME
IN SOME PLACES WE WOULD BE MORE
CONCERNED ABOUT OUR OWN SECURITY
INTERESTS.
THIS IS A COMPLICATED SPACE THAT
BEARS WATCHING AND TALKING ABOUT
MACHINE LEARNING THERE IS DATA
USED TO TRAIN NEW ALGORITHM AND
THAT IS USED TO GET RESULTS THAT
YOU ARE LOOKING FOR HAD AND HOW
IT IS CLASSICALLY DONE AND MORE
AND MORE DATA COMES IN OVER TIME
AND GETS COLLECTED AT SCALE THAT
IS GOING ON RIGHT NOW WILL
CHANGE. TRAINING DATA MIGHT NOT
BE RELEVANT TO BIGGER DATA SET.
IT MAY NEED TO BE RETRAINED. WE
WILL SEE LOTS OF ALGORITHMS GET
UPDATED, REVISED AND CHANGED
OVERTIME BASED ON DATA
ACCUMULATED EVERY SECOND OF
EVERY DAY.
>>I APPRECIATE THE COMMENT
ABOUT HOW THERE IS-WHAT IS
HAPPENING NOW.
PUTTING IT IN ONE FRAME IN
GENERAL PART OF THE TRUST PIECE
IS PEOPLE DON'T KNOW WHAT THEY
DON'T KNOW.
HEALTH CARE SPACE IS SPACE THAT
PATIENT GOES THAT IS GUIDED BY
HEALTHCARE PROVIDER IT HAS THE
RELATIONSHIP AT FUNDAMENTAL
PIECE IS A VULNERABLE PLACE THAT
YOU ARE COMING AND HELPING THIS
PERSON IN YEARS OF EDUCATION AND
KNOWLEDGE THAT IS GOING TO GIVE
YOU SOLUTIONS.
SO, I THINK THAT WE HAVE TO
APPROACH ALL THIS PIECE OF
RESEARCH THAT IS WITH THAT SAME
UNDERSTANDING IT THAT PEOPLE ARE
EXPECTING AND WHAT MAYBE
SUBCONSCIOUSLY EVEN THAT IS FOR
THAT TYPE OF GUIDANCE AND I
DON'T KNOW WHAT QUESTION TO ASK
YOU TO PROTECT MY FUTURE
INTERESTS; RIGHT?
I THINK THAT IS A LOT OF WHERE
YOU SEE THESE VERY REACTIVE
RESPONSES TO CERTAIN ASPECTS OF
THE CASE STUDIES AND, YOU KNOW,
IN DATA THAT WE COLLECTED THAT
COMES DOWN TO THAT AND THEY
DON'T KNOW WHAT THEY DON'T KNOW
AND WHAT TO ASK AND WHAT YOU ARE
SHARING WOULD BE VERY NEW AND IN
THAT RESPECT THAT IS HERE AND
FRIGHTENING TO SOME FOLKS.
>>THAT IS IMPORTANT TO THINK
ABOUT HOW TO INTEGRATE THAT
CONVERSATION THAT YOU HAD AND
PICHLUS HAS WITH COMMUNITY
MEMBERS THAT ARE WITH SORTS OF
THINGS THAT JAY IS TALKING AB
ABOUT.
THAT HOLDS TRUE FOR MACHINE
LEARNING DEVELOPERS AND THEY
DON'T KNOW WHAT THEY DON'T KNOW;
RIGHT?
YOU HAVE DIFFERENT GROUPS THAT
DON'T KNOW WHAT THEY DON'T KNOW
AND FOR EXAMPLE THEY TALK ABOUT
DATA SHARING AND MACHINE
LEARNING DEVELOPERS HAVE -- AI
DEVELOPERS HAVE THEIR OWN PET
PEEVES ABOUT DATA SHARING AND
NOBODY SHARES DATA AND I DON'T
THINK THAT MOST PATIENTS OR
PUBLIC KNOWS THAT THEIR HEALTH
CARE SYSTEM IS PROBABLY NOT
SHARING DATA; RIGHT?
THAT IS NOT TRANSPARENT EITHER
AND THEY ARE NOT BENEFITING FROM
SHARED DATA FROM OTHER HEALTH
SYSTEMS IMPROVING MODELS BY
MAKING THEM MORE DIVERSE AND
PEOPLE DON'T KNOW THAT.
THEY DON'T KNOW ABOUT
COMPLEXITIES OF INTELLECTUAL
PROPERTY THAT GETS IN WAY OF
DATA SHARING AND THAT SORT OF
THING. I THINK THAT IS SUPER
IMPORTANT.
THAT IS WHERE THIS ISSUE OF
CHANGING CULTURE OF DATA
PRACTICES IS REALLY IMPORTANT.
PARTLY PEOPLE DON'T KNOW WHAT
THEY DON'T KNOW BECAUSE OF THEIR
CULTURES AND THEIR CULTURES AND
PRACTICES ARE DRIVING WHAT TYPES
OF THINGS THEY THINK ARE
IMPORTANT TO KNOW OR NOT KNOW.
FOR EXAMPLE, YOU KNOW, IF YOU
TALK TO -- THERE IS AN IDEA
THAT, YOU KNOW MANY FOR EXAMPLE
YOU ARE WORKING ON A PROTOTYPE
MODEL NO ETHICS ARE INVOLVED.
IT IS A PROTOTYPE. YOU DON'T
HAVE TO KNOW ABOUT ALL OF THE
ETHICS AND THAT SORT OF THING
AND THERE ARE MENTAL MODELS WHAT
IT IS YOU ARE DOING THAT DRIVES
A LOT OF HOW PEOPLE TAKE IN
OTHER PERSPECTIVES OR NOT.
>>ON THIS POINT I WANT TO GO
BACK TO LISA'S POINT ABOUT HOW
COMPLICATED ALL THIS IS AND WHAT
RESPONSIBILITY OR WHAT ARE
DIFFERENT LEVELS AND WHAT DOES
RESPONSIBILITY LOOK LIKE AT ALL
THOSE LEVELS AND THINK IT GETS
TO COMPLEXITY YOU TALK ABOUT
THAT PEOPLE DON'T KNOW WHAT THEY
DON'T KNOW.
THEY DON'T KNOW WHAT QUESTIONS
TO ASK AND THAT TEASING OUT WHAT
IS THE PROCESS AND WHAT ARE
DIFFERENT POINTS AT WHICH PUBLIC
MIGHT INFORM WHETHER WE PICK A
OR B OR WHAT DIRECTION WE GO IS
SOMETHING THAT WOULD BE HELPFUL
FOR NIH TO KNOW THIS IS A REALLY
COMPLICATED SPACE AND HAVE TO
FIGURE OUT WAYS TO BREAK IT DOWN
TO COMPONENT PARTS AND FIGURE
OUT WHAT RESPONSIBILITY AND
TRANSPARENCY AND RELIABILITY
LOOKS LIKE ALONG THIS WHOLE
PANELWAY.
BEFORE I REMIND OUR INTERNET
VISITORS THAT THEY CAN SUBMIT
QUESTIONS I WILL SWITCH TO THE
NEXT SLIDE AND WANT TO SAY TO
JAY AND PICK UP ON HIS POINT
ABOUT INTELLECTUAL PROPERTY;
RIGHT? IT IS ABOUT DATA
OWNERSHIP AND IS ABSOLUTELY THE
CASE AND WOULD LOVE TO HEAR
JEN'S VIEWS AND LAWYERS IN THE
ROOMS VIEWS ON THIS LATER.
GENERATIVE AI MAKING CODE
ALREADY OR AI THAT IS WRITING
SONGS AND PAINTING PICTURES IN
STYLE OF IS WE ARE JUST AT
BEGINNING OF ALL THOSE CREATORS
THAT ARE DEMANDING CREDIT FOR
THEIR WORK; RIGHT?
THAT IS RELATED TO THE DATA
OWNERSHIP DISCUSSION WE HAVE
BEEN HAVING THAT IS FASCINATED
BY THE EXAMPLE OF COMMUNITY
ASSOCIATION WITH OWNERSHIP OVER
DATA THAT IS STORED AT UVA.
THERE IS OF COURSE THE ENTIRE
DATA SOVEREIGNTY CONVERSATION
THAT IS HAPPENING IN INDIGENOUS
COMMUNITIES AND WHAT IT WILL
LOOK LIKE AND HOW IT WILL SHAPE
THIS SPACE IN OUR CONVERSATION
AND I WILL NOW REMIND OUR
VIEWERS ON LINE THAT YOU CAN
SUBMIT COMMENTS AND QUESTIONS TO
SCIENCE POLICY AT OD.NIH.GOV.
THEY WILL BE READ ANONYMOUSLY AT
MICROPHONE HERE. AND THAT ALL
OF THE MATERIALS ASSOCIATED WITH
THIS CONVERSATION ARE AVAILABLE
ONLINE AT THE WEBSITE.
ALL RIGHT.
I WANTED TO GO BACK AND FOCUS
AGAIN THAT GIVEN WHAT WE HAVE
LEARNED FROM OUR COMMUNITY
CONVERSATIONS LIKE WHAT
OPPORTUNITIES ARE THERE TO SHAPE
PRACTICE?
WHAT OPPORTUNITIES ARE THERE TO
SHAPE THE QUESTIONS THAT WE ARE
ASKING AND WAY THAT NIH IS
ASKING US TO DO RESEARCH.
JAKE, CAN I START WITH YOU?
>>SURE. I THINK THAT THE
BIGGEST OPPORTUNITY IS FOR NIH
TO LEAD BY EXAMPLE AND DON'T
THINK THAT NIH HAS AUTHORITY TO
CONTROL THE WHOLE ECOSYSTEM WE
DESCRIBED THAT IS VERY COMPLEX
AND IS DOMINATED BY COMMERCIAL
INDUSTRY RIGHT NOW THAT IS NOT
GOING TO WORK.
IF NIH COULD KIND OF TAKE THE
LEAD IN TERMS OF THINKING ABOUT
WHAT THE LANDSCAPE COULD LOOK
LIKE FOR CERTAINLY NIH-FUNDED
RESEARCH THAT IS WELL WITHIN ITS
PURVIEW AND FOR EXAMPLE FOR THE
REST, I THINK THAT WOULD START
THE CONVERSATION IN THE RIGHT
DIRECTION. I WOULD ENCOURAGE
NIH TO THINK PROACTIVELY ABOUT
NOT JUST WHAT IS HERE AND NOW
RIGHT THIS MINUTE BUT WHAT IS
COMING NEXT OR TRY TO OR HARD TO
DO ADMITTEDLY AND VERY IMPORTANT
AND BY THE WAY IS HAPPENING
INCREDIBLY FAST PACED TWO YEARS
TO BE WRITTEN NOT ABOUT THIS BUT
OTHER THINGS IS 2 YEARS TOO
LATE. CAN'T TELL YOU HOW MANY
CYCLES OF INFORMATION TECHNOLOGY
TURNOVER HAVE HAPPENED IN THAT
SPAN OF TIME.
IT IS MIND BOGGLING AND HALF
LIFE OF DISCOVERY IS MEASURED IN
YEARS AND HOURS AND DAY WANDS HE
HAVE TO THINK AT THAT PACE TOO.
SPEED MATTERS HERE. I WOULD
ALSO ENCOURAGE NIH TO TAKE THE
LEAD IN HURRYING UP.
THAT WOULD ALSO SET A CLEAR
EXAMPLE THAT IS NECESSARY TO
MAKE A DIFFERENCE IN IMPACT OF
CONVERSATIONS.
>>WHAT NEXTRAC TOOK ITSELF TO
DO MANDATE TO DO IS HORIZON
SCANNING AND WHAT YOU ARE ASKING
FOR IS YOPD HORIZON SCANNING AND
VISIONING ABOUT WHAT THE FUTURE
MIGHT BE.
>>YEAH. HORIZON TODAY WILL BE
OBSOLETE IN 24 MONTHS I
GUARANTEE YOU.
>>MAYBE THINKING ABOUT IDEAS
FOR HOW TO MANAGE IN THAT
CONTEXT.
>>YOU WANT A SOLUTION TO THE
PROBLEM I JUST PROPOSED SGLI
WISH I HAD A GOOD ONE.
>>START THE WAY YOU HAVE
STARTED AND GET SMART AND VERY
COMMITTED PEOPLE IN THE ROOM
FROM MULTIPLE, MULTIPLE
DISCIPLINES TO THINK ABOUT IT
AND START TO IMAGINE WHAT YOU
WOULD HAVE TO DO TO DO THAT.
AND TO ENGAGE PUBLIC THAT I
THINK PEOPLE CARE ABOUT THIS TOO
AND THEY KNOW IT AND HOW FAST
THINGS ARE CHANGING AND NOT
SAYING ANYTHING MOST PEOPLE
DON'T ALREADY KNOW.
THEY ARE WORRIED ABOUT US NOT
BEING ABLE TO KEEP UP MUCH LESS
GET AHEAD OF IT. IF YOU THINK
ABOUT HOW TO HAVE A CONVERSATION
ABOUT HOW TO GET AHEAD OF THIS
YOU WILL FIND LOTS OF VERY
COMMITTED PEOPLE WITH GOOD IDEAS
COMING TO THE TABLE GIVING GOOD
SUGGESTIONS CROWD SOURCING.
>>THANK YOU. LISA?
>>SURE. IF I COULD BE BOLD
HERE.
>>GEEZ.
>>AND SUGGEST A VISION OF SOME
THINGS I THINK WE MIGHT DO. I
THINK THAT I SEE THE NIH. AND
AS HAVING TREMENDOUS OPPORTUNITY
HERE. NOT JUST NIH BUT THE
FEDERAL GOVERNMENT.
IN TERMS OF BRINGING TOGETHER
DIFFERENT GROUPS WITHIN THE
GOVERNMENT THAT ARE WORKING IN
THIS SPACE; RIGHT?
FDA IS DOING WORK IN DIGITAL
HEALTH AND WHOLE CONCEPT OF
SOFTWARE AS A MEDICAL DEVICE AND
REGULATION IN THAT SPACE AND DOD
IS DOING WORK IN AI. THERE IS
I'M SURE MANY DIFFERENT PARTS OF
THE GOVERNMENT I'M NOT AWARE OF
WORKING IN THIS SPACE. I THINK
THERE IS AN OPPORTUNITY TO COME
TOGETHER NOT ONLY WITHIN THE
GOVERNMENT BUT ALSO IN TERMS OF
PUBLIC/PRIVATE PARTNERSHIPS TO
CREATE A PATH FORWARD HERE. I
THINK TO ONE -- LET ME JUST
THROW OUT SEVERAL DIFFERENT
OPPORTUNITIES AND ONE IS THE
SPACE OF REGULATION AND JAY IS
MENTIONING THIS IS MOVING FAERT
AND NO OVERSIGHT AT THIS POINT
IN TERMS WHAT PEOPLE CAN DO IN
SPACE OF AI AND NOT CLARITY ON
BOUNDARIES OF CLINICAL DECISIONS
SUPPORT SYSTEMS NEEDING
REGULATION AND HOW IT DIFFERS
FROM PREDICTIVE ALGORITHMS THAT
HEALTH CARE PROVIDERS HAVE USED
FOR DECADES AND THINKING ABOUT
THAT THERE DOESN'T NEED TO BE
ANY REGULATION THERE. AND MY
OWN FEELING IS THAT WOULD BE A
MISTAKE. SOME PEOPLE HAVE SAID
WE SHOULD BAN ALL THIS AND PUT A
PAUSE ON IT.
THERE IS TOO MUCH OF A POTENTIAL
FOR HARM. THEN I THINK THAT THE
MORE LIKELY SCENARIO I TAKE A
MORE MODERATE PERSPECTIVE HERE
IS THAT THERE CAN BE SOME
CONTROL OVER USE OF AI IN
HEALTHCARE THAT WE ARE FOCUSED
ON HERE AND ANALOGY IN MY MIND
IS TO CLINICAL TRIAL AND HOW WE
REGULATE THEM AND NEW
DEVELOPMENT OF NEW DRUGS TESTED
IN CLINICAL TRIALS AND DOING
THAT IN CONTEXT OF AI TOO.
THERE IS OPPORTUNITY FOR
GOVERNMENT IN NIH TO COME
TOGETHER WITH PARTNERS
DEVELOPING CLARITY ON WHAT
REGULATION LOOKS LIKE AND
GREATER DATA PRIVACY TLANDZ IS
OPPORTUNITIES AND QUESTIONS WHAT
IS ROLE OF NIH AND IN HELPING TO
SHEPHERD THOSE ALONG AND HAVING
THAT IMPLEMENTED TO MITIGATE
POTENTIAL HARMS TO INDIVIDUALS
AND WE NEED A RENLTRY OF AI
ALGORITHMS AND HEALTHCARE.
NIH AND GOVERNMENT CDC AND
REGISTRIES FOR CANCER DATABASES
AND PARTS OF RARE DISEASES AND
WHY NOT HAVE THAT IN FOR AI
ALGORITHMS SO WE CAN NOT ONLY
UNDERSTAND WHAT IS HAPPENING BUT
ALSO CAN ENSURE THAT THE
BENEFITS OF THOSE ALGORITHMS ARE
ACTUALLY BROUGHT THROUGH TO ALL
PARTS OF ALL COMMUNITIES AND
THOSE WHO MAY HAVE BEEN
ALGORITHM MICLY UNDERSERVED AND
IDEA OF BELL MONT 2.0 IS
IMPORTANT AND COMPREHENSIVE
ETHICAL FRAMEWORK ENSURING WE
HAVE PLACE GUARDS IN PLACE AND
INTEGRATING AI ML INTO
HEALTHCARE AND COMPANION TO THAT
HAVING A KIND OF AI RESEARCH
REVIEW COMMITTEE WHETHER
REGIONALLY OR WITHIN HEALTH CARE
SYSTEMS WE CAN REFLECT HOW WE
SET UP IRBS AND ACADEMIC
SETTINGS IS THAT THE BEST WAY
ACADEMIC IRBS?
AS UNL BIASED AND INDEPENDENT AS
WE MIGHT LIKE OR BETTER APPROACH
AND OPPORTUNITY TO THINK ABOUT
WHAT THAT REVIEW LOOKS LIKE.
STANDARDS ON GOVERNANCE AND
PROCESSES IMPLEMENTATION VALUE
OF DATA QUALITY ASSESSING
ALGORITHMS AND MONITORING
ALGORITHMS AND DEVELOPING
FRAMEWORK IS A PIECE OF THIS
THAT NEEDS TO HAPPEN AND
DEVELOPING AI TOOLS FOR
PREPAREDNESS ON TRANSPARENCY AND
ON CLARIFYING WHAT ARE
RESPONSIBLE AI PRACTICES AND
WHAT WE MEAN BY EXPLAINABILITY
AND WHAT WE MEAN BY
INTERPRETAB
INTERPRETABILITY.
HOW CAN WE STANDARDIZE
TRANSPARENCY OR MODEL CARDS TO
GIVE PEOPLE AN UNDERSTANDING
WHAT IS GOING INTO AN ALGORITHM
AND DEMYSTIFY THAT BLACK BOX OF
AI?
AND THEN I THINK THERE IS A NEED
FOR A NATIONAL LABORATORY WHERE
WE CAN CREATE AN AI EVALUATION
SANDBOX TO REALLY ASSESS
ROBUSTNESS OF THESE ALGORITHMS
AND TO ASSESS THEM FOR BIAS.
>>YEAH.
>>SO, I THINK THAT THERE ARE
TREMENDOUS OPPORTUNITIES HERE IN
THIS SPACE THAT IS EXCITING WHEN
YOU THINK ABOUT IT.
IF WE TAKE A STEP BACK. WE ARE
THOUGHTFUL AND THAT IS ABOUT
WHERE WE WANT TO GO AND WHAT OUR
VISION IS AND WHAT IDEA OF
SUCCESS LOOKS LIKE HERE AND WHAT
STEPS ARE WE NEED TO PUT INTO
PLACE TO GET THERE WE CAN HAVE A
TREMENDOUS IMPACT.
>>THANK YOU.
>>NIH IS ALREADY FUNDING LARGE
SCALE AI PROJECTS FOCUSED ON
DEVELOPING AI-READY DATA SETS
THAT DO OR ARE MINDFUL ABOUT
COMPOSITION, ET CETERA.
THAT MIGHT BE A PLACE FOR THE
SANDBOX IDEA THAT YOU JUST
ARTICUL
ARTICULATED.
>>I'M CURIOUS TO FOLLOW UP AND
DON'T KNOW IF YOU SEE AI WORKS
ASIDE IN TERMS OF DATA PRIVACY,
ET CETERA, ASIDE FROM WORK WE
ARE DOING ALREADY AND THERE IS
ATTENTION BETWEEN WHAT WE HEARD
FROM COMMUNITY PARTICIPANTS AND
SORT OF THE PUSH TO BROAD
CONSENT AND BROAD SHARING AND
USE THAT WE ARE SEEING RIGHT
NOW.
HOW DO WE MANAGE THAT TENSION?
WHAT DO WE DO WITH THAT?
>>I'M HAPPY TO JUMP IN HERE. I
THINK PART OF THE REASON WHY
THIS WORK THAT YOU HAVE BEEN
DOING IN TERMS OF PUBLIC
ENGAGEMENT AND WHAT I WOULD CALL
DEMOCRATIC DELIBERATION AND
BIOETHICS DELIBERATION IS SO, SO
IMPORTANT. I THINK THAT SETTING
IN SOME WAYS WE NEED TO RESET
EXPECTATIONS WITH THE PUBLIC AND
TO IN TERMS OF PRIVACY; RIGHT?
WE MIGHT NOT BE ABLE TO --
ESPECIALLY WHEN TALKING ABOUT
INTEGRATING GENOMIC DATA THAT
MANY PEOPLE WOULD SAY IT IS NOT.
YOU KNOW, YOU CAN NEVER
COMPLETELY PROTECT PRIVACY OF
GENOMIC DATA AND IF WE WANT TO
REALIZE ALL BENEFITS OF MACHINE
LEARNING AND AI AND HEALTH CARE
IS THE INTEGRATION OF GENOMIC
DATA WITH ALL OTHER DATA THAT IS
GOING TO ALLOW US TO MAKE
POWERFUL -- GAIN POWERFUL
INSIGHTS AND THINK THAT
RESETTING THE PUBLIC'S
EXPECTATIONS AND FIRST OF ALL
THERE ARE TRADEOFFS WE CAN'T
ASSURE PEOPLE THERE WILL BE 100%
PROTECTION OF PRIVACY AND MAYBE
RISKS ARE MINIMAL AND WE CAN DO
EVERYTHING WE CAN AND YOU KNOW A
CONCEPT OF FEDERATED LEARNING
AND PRIVACY ON DEVICES AND THERE
IS MANY TECHNOLOGICAL FIXES THAT
WE CAN MAKE PROGRESS ON THAT
DOESN'T MEAN IT IS PERFECT. I
THINK THERE IS A TENSION THERE.
I THINK THAT WE SHOULD OWN IT.
I DON'T -- I THINK THAT -- I'M A
BELIEVER IN RADICAL TRANSPARENCY
AND DON'T THINK SKIRTING ISSUES
OR I JUST REALLY BELIEVE IN
SAYING THINGS AS THEY ARE. AND
HOPEFULLY THE PUBLIC THEN NEEDS
TO HAVE A CONVERSATION THAT IS
ABOUT HOW THEY WANT TO ASSESS
TRADEOFFS AND THERE MIGHT BE
SIGNIFICANT BENEFITS TO SHARING
DATA DESPITE THAT SMALL RISK.
>>THANK YOU GETTING TO MILDRED
AND MONICA ABOUT OPPORTUNITIES
FOR SHAPING POLICY AND PRACTICE
BEFORE I TURN TO QUESTIONS IN
THE ROOM AND IN ONLINE AUDIENCE.
>>YEAH. I THINK THAT I
COMPLETELY AGREE WITH JAY THAT
THE NIH HAS -- YOU KNOW, IT IS
MANDATED AND SCOPE.
WHERE IT CAN BE INFLUENTIAL IN
WAYS TO BE COMPLEMENTARY AND
RESEARCH IN CONDUCT OF DATA AND
THINKING ABOUT HOW TO INTRODUCE
DATA THAT YOU HAVE THAT YOU
CREATED THAT IS FANTASTIC DATA
INTEGRATING INTO CURRICULUM OF
ANYBODY WORKING WITH DATA AND
THEY NEED TO UNDERSTAND AND
EVERYONE NEEDS TO UNDERSTAND IT
IS NOT DATA BUT PEOPLE; RIGHT?
WE FORGET THAT AND HAVE TO
REMIND PEOPLE ALL THE TIME IT IS
NOT DATA BUT PEOPLE. YOU ARE A
PERSON TOO. WHAT WOULD YOU FEEL
LIKE IFFUR DATA WAS IN THE DATA
SET AND USED IN WAYS IT MIGHT BE
USED OR MISUSED IN CERTAIN WAYS.
HOW DO WE DO AND CAN USE
TRAINING VENUE TO ENCOURAGE
PEOPLE TO DO EMPATHY WORK AND
PUT YOURSELF IN SHOES OF --
RIGHT?
YOU BE ON THE OTHER SIDE NOW.
SO, I THINK THAT IS IMPORTANT.
AND IN TERMS OF REGULATION WE
ARE IN THAT ZONE WHICH IS VERY
FUZZY AND NOT CLEAR HOW TO
REGULATE OR USE DATA.
ONE THING THAT SANDRA OFFERED TO
TALK ABOUT IS A RIGHT TO A
REASONABLE INFERENCE THAT IS NOT
REALLY DATA THAT PEOPLE ARE
CONCERNED ABOUT AND I READ ABOUT
IN THESE RESPONSES.
IT IS HOW THEY ARE BEING USED
AND DATA PROTECTION IF YOU
PROTECT DATA YOU ARE GOOD.
REALLY YOU HAVEN'T STARTED YET
AND IT IS REALLY ABOUT HOW YOU
ARE USING DATA TO MAKE
INFERENCES ABOUT PEOPLE.
>>THAT IS RIGHT.
>>THAT HAVE NOTHING TO DO WITH
DATA.
HOW DO YOU KNOW SOMEONE IS
PREGNANT OR WILL HAVE A BABY IN
6 WEEKS AND THERE IS ALL THIS
INFERENCE THAT HAPPENS AND
NOBODY TO PROTECT MODELING AND
PREDICTION AND THOSE SORTS OF
THINGS THAT IS ANOTHER PLACE FOR
POLICY TO PUT ATTENTION.
>>TO ADD TO THAT I WOULD SAY
THIS MIGHT BE NOT A NORM FOR
SCIENTIFIC COMMUNITY AND HAVE
YOU CONSIDERED OR NIH HAVE YOU
CONSIDERED USING COMMUNITY
MEMBERS FOR OUTSIDE VALIDATORS
FOR DATA BEING USED TO BUILD
ALGORITHMS AND AFTERWARDS THERE
IS A PLACE FOR THE COMMUNITY,
YOU KNOW, COMMUNITIES TO BE PART
OF THAT REVIEW PROCESS, TO, YOU
KNOW REVIEW FOR CULTURAL
IMPLICATIONS AND REVIEW FOR TONE
AND SOCIAL MEDIA THINKING
SPECIFICALLY ABOUT CASE STUDY
REVIEWING FOR HUMOR AND OTHER
PIECE WE HEARD LOUD AND CLEAR
FROM COMMUNITIES AS WELL TIEING
INTO THIS BEFORE SOMETHING IS
PUBLISHED HAVING COMMUNITIES
THAT ALSO REVIEW AND, YOU KNOW,
BECAUSE THERE IS AN OPPORTUNITY
AND THERE IS AN OPPORTUNITY FOR
BIAS INITIALLY AND THERE IS AN
OPPORTUNITY FOR STIGMA, I THINK,
ON THE OUTSET.
BEING PART OF THAT, YOU KNOW,
PEER REVIEW PROCESS,
SO-TO-SPEAK, RIGHT?
TO BE ABLE TO SAY OUR COMMUNITY
DOESN'T AGREE WITH FINDINGS AND
THIS IS WHY AND WHY THERE ARE
NOT CONVERSATIONS THERE AND
THINK THOSE ARE TO ME TWO VERY
PRACTICAL AND IF THIS IS A
PRIORITY EASY TO IMPLEMENT;
RIGHT?
WITH THE RIGHT PARTNERS AND EASY
TO IMPLEMENT PROCESS FOR NIH.
>>FANTASTIC. THANKS SO MUCH.
WE HAVE A QUESTION FROM ONLINE
AUDIE
AUDIENCE.
>>NIH AND VOICING A QUESTION
FROM THAT AUDIENCE.
THE QUESTION IS AS FOLLOWS.
IT IS RELATED TO PUBLIC/PRIVATE
PARTNERSHIP YOU TOUCHED ON.
REAL WORLD EVIDENCE IS BECOMING
MORE OF A RESOURCE USED BY
INDUSTRY TO SUPPORT
EFFECTIVENESS AND SAFETY OF
DRUGSES AND MEDICAL DEVICES
UTILIZING AI AND ML AND RESEARCH
COMMUNITY COLLABORATING WITH
INDUSTRY PROTECTING PATIENTS
CONFIDENTIALITY AND PRIVACY IN
DATA IN HANDS OF RESEARCHERS.
>>THANK YOU. DURING COVID-19
WE REALLY LEARNED ABOUT POWER OF
PUBLIC/PRIVATE PARTNERSHIP AND
POSSIBLY MOVING MORE QUICKLY
THAN WE HISTORICALLY THOUGHT WE
COULD.
ANYONE WANT TO TAKE THIS ON
FIR
FIRST? SGLI WILL SAY BRIEFLY
THAT I THINK THAT ONE OF THE
THINGS THAT I THINK -- I PICKED
UP ON IN THE COMMUNITY
ENGAGEMENT WAS THAT PRIVACY AND
CONFIDENTIALITY PER-SE ARE NOT
NECESSARILY GETTING AT THE HEART
OF WHAT PEOPLE'S CONCERNS ARE.
IT IS SORT OF THAT THEY
ACKNOWLEDGE RISKS THERE ARE TO
PRIVATE PRIVACY AND PARTICULARLY
SMALL RISKS AND IT IS REALLY
BALANCE OF THAT WITH THE
BENEFITS; RIGHT?
SO, I THINK, YOU KNOW, WITH ANY
KIND OF DATA WHETHER REAL WORLD
EFTDZ OR WHATEVER KIND OF DATA
IT IS, I THINK IT REALLY BOILS
DOWN TO, YOU KNOW, PEOPLE
UNDERSTANDING THAT THERE ARE
TRADEOFFS TO PRIVACY AND THEY
JUST NEED TO KNOW WHAT TRADEOFFS
ARE.
>>YEAH.
>>WELL, THEY ARE INTERESTED IN
BENEFIT NOT JUST FOR THEMSELVES
BUT FOR THEIR COMMUNITIES AS
WELL.
>>RIGHT.
>>IT IS A REALLY IMPORTANT
QUESTION THAT IS REALLY
COMPLICATED AND MULTI-FACETED.
I DON'T HAVE A QUICK 30 SECOND
ANSWER EXCEPT TO SAY THERE ARE
SOLUTIONS FOR IT.
SO, YOU KNOW, WHO OWNS AN
INDIVIDUAL'S DATA?
YOU ASK EACH OF US WHO OWNS OUR
OWN DATA AND YOU MIGHT GET
DIFFERENT ANSWERS.
CERTAINLY IF YOU ASK WHO
CONTROLS SHARING OF OUR
INDIVIDUAL DATA, THINK THAT
ALMOST ALL OF US WOULD SAY WE DO
AS INDIVIDUALS.
NOT ALL ORGANIZATIONS SHARE THAT
VIEW, INCLUDING YOUR HEALTH CARE
DELIVERY SYSTEM. I THINK WE
HAVE TO GET TO THE POINT WHERE
WE HAVE A BETTER UNDERSTANDING
OF WHO IS RESPONSIBLE FOR GIVING
PERMISSION AND MAKING THAT
SYSTEMATIC ACROSS THE COUNTRY
FOR EVERYBODY.
I THINK WE HAVE TO GET THAT DONE
SOON.
THAT WILL BE A STUMBLING BLOCK
FOR ANYTHING WE ARE TRYING TO DO
HERE. SECONDLY, INDIVIDUALS AND
PATIENTS AND CITIZENS AND PEOPLE
REALIZE THEY HAVE CONTROL OVER
THEIR DATA AND WHO HAS ACCESS TO
IT WHEN THEY REALLY KNOW THAT TO
BE TRUE AND SOME OF THE CONCERNS
FOR SOME AT LEAST START TO MELT
AWAY A LITTLE BIT.
TRADEOFF BETWEEN PRIVACY
CONSIDERATIONS AND BENEFITS OF
DATA CHANGE NOT TO EVERYBODY BUT
TO SAME DEGREE I CAN TELL YOU
FROM WORK WE ARE DONE AND OTHERS
THAT PATIENTS WITH ADVANCED
CANCER ARE NOT CONCERNED ABOUT
PRIVACY AND ARE MUCH MORE
CONCERNED ABOUT TRYING TO HELP
MOVE THE FIELD EVEN IF THEY KNOW
THEY WON'T BE AROUND TO SEE IT.
THEY WANT TO FEEL THAT THEY
CONTRIBUTED TO SOMETHING.
WE HEARD EARLIER ABOUT
INDIVIDUALS WITH RARE DISEASE
DIAGNOSIS AND GROUPS BEING
INCREDIBLY WILLING TO SHARE AND
DESPERATE TO SEE SOMETHING
HAPPEN. THERE IS PLACES TO
START AND MOVE THE NEEDLE AND
DURING COVID WE FOUND TREMENDOUS
INTEREST IN SHARING DATA ACROSS
NOT JUST INDIVIDUALS BUT ALSO
ORGANIZATIONS AND OTHERWISE
POTENTIAL OWNERS OF DATA IF THAT
IS THE RIGHT WORD WHO WOULD NOT
WORK TOGETHER ABOUT YOU KNEW
THEY NEED TO WORK TOGETHER IF WE
WILL ACHIEVE SOMETHING.
NOT EASY.
THERE IS EXAMPLES HOW YOU CAN
MAKE FIRST STEPS AND MAKE IT
WORK AND YOU CAN BUILD UPON
THAT. ONCE YOU SHOW SUCCESS
WITH THINGS I JUST SAID AND
OTHERS WILL RECOGNIZE SUCCESS
THAT WILL COME TO THEM AS WELL
AS BENEFITS THAT YOU HAVE TO
DEMONSTRATE IT.
>>STARTING WITH VOICES OF FOLKS
VERY, VERY WILLING TO SHARE
BECAUSE OF CURRENT CIRCUMSTANCES
AND FOLKS THAT ARE VERY
UNWILLING TO SHARE DUE TO
PERSONAL EXPERIENCE AND
HISTORICAL EXPERIENCES OF THE
COMMUNITIES.
>>I CAN'T TELL ANYBODY ELSE
WHAT TO DO.
I WILL TELL YOU WHAT I DO. I
START WITH COALITION OFLE FIRST.
I WILL TRY TO DEMONSTRATE IT
WORKS AND SHARE THAT SUCCESS
WITH OTHERS TO SEE IF WE CAN
CONVINCE LESS WILLING OF THE
BENEFIT AND QUESTION ASKED
EARLIER HOW DO I KNOW I WILL SEE
A BENEFIT SOON TO ME OF SHARING
MY DATA IS AN IMPORTANT QUESTION
AND IF WE DON'T HAVE A GOOD
ANSWER FOR EACH INDIVIDUAL ON
THAT SCORE, THEN SHAME ON US.
I THINK THAT -- I THINK WE NEED
TO GET BETTER AT DOING THAT.
>>MAKING THE CASE THAT THE
REASON THAT WE KEEP USING COVID
AS A EXAMPLE BUT REASON THAT
WORKED IS EVERYONE SAW WHAT
DIRECT BENEFIT WOULD BE.
YOU KNOW?
I THINK THAT IS JUST -- JUST
THAT UNDERSTANDING IS OBVIOUSLY
AN IMPORTANT PIECE.
>>WE ALL -- WITH COVID THOUGH
WE ALSO DEVELOPED A
TECHNOLOGICAL APPROACH THAT
ALLOWED US TO PROTECT PEOPLE'S
PRIVACY.
THROUGH THE -- IN TERMS OF
EXPOSURE NOTIFICATION APP I'M
THINKING ABOUT NOW AND WE DID
LOTS IN COVID OBVIOUSLY IN TERMS
OF DATA SHARING AND RESEARCH AND
THINGS LIKE THAT AND IF THINKING
ABOUT THE WILL I THINK IS NOT
TAKEN UP NEARLY AS MUCH AS IT
COULD HAVE BEEN AND AS WIDELY
THAT HAS TO DO WITH
COMMUNICATION ISSUES AND WE
DEVELOPED AN INFRASTRUCTURE
TECHNOLOGIC
TECHNOLOGICALLY THAT HELPED
REASSURE PEOPLE IF THEY
UNDERSTOOD IT ABOUT PRIVACY
PROTECTION AND BUILDING ON WHAT
JAY WAS SAYING IN TERMS OF
MOVING FORWARD IN SPACE IN TERMS
OF REAL WORLD EVIDENCE AND
RESEARCHERS ABILITY TO DO WORK
WITH DATA PROTECTING PRIVACY AND
SEVERAL LARGE TECH COMPANIES ARE
BUILDING AND HAVE BUILT
INFRASTRUCTURE FOR PEOPLE TO
CONTROL WHAT IS A PERSONALLY
CONTROLLED HEALTH RECORDS AND
SOME HAVE THEM ON YOUR PHONE AND
SO QUESTION IN MY MIND IS GIVEN
EVERYTHING WE LEARNED FROM
PARTICIPANTS IN FOCUS GROUPS
ABOUT TRUST AND COMMERCIAL
INTERACTIONS AND LACK OF TRUST
IN INDUSTRY AND TECHNOLOGY
COMPANIES IS WHY ARE WE LEAVING
THE PERSONALLY CONTROLLED HEALTH
RECORDS TO COMPANIES AND WHY
DON'T WE HAVE A GOVERNMENT
INFRASTRUCTURE FOR PEOPLE TO
HAVE PERSONAL HEALTH RECORDS AND
TO BE ABLE TO DECIDE WHO THEY
WANT TO SHARE IT WITH.
ULTIMATELY IN TERMS OF ADVANCING
RESEARCH WE NEED INFRASTRUCTURE
WHERE EACH INDIVIDUAL CONTROLS
OWN HEALTH INFORMATION AND THEY
CAN DECIDE AND THEY HAVE AGENCY
TO DECIDE WHO THEY WANT TO SHARE
THAT WITH.
SO, THAT IS ONE THING. PART OF
THE OTHER REAL WORLD EVIDENCE
AND RESEARCH THAT GOES BACK TO
THE IDEA OF PRIVACY ON DEVICES
AND REAL WORLD EVIDENCE AND
CONCEPT OF FEDERATED LEARNING
WHERE WE SHOULD USE THAT
TECHNOLOGICAL APPROACH TO
PROTECT PEOPLE'S PRIVACY
ALLOWING US TO DO RESEARCH.
>>OKAY. SO MUCH TO FOLLOW UP
ON THERE. TWO MORE PEOPLE AT
THE MIC OR THREE MORE AT THE MIC
IN THE ROOM. PLEASE IS.
>>THANK YOU FOR THE PANEL.
WE ARE HERE TODAY BECAUSE OF
IMPACT AND REACH IN DATA AND AI.
I WAS STRUCK BY WHAT YOU SAID IN
THE VERY BEGINNING AND YOU HEARD
IN FOCUS GROUPS AND WORK YOU
HAVE DONE WITH DEVELOPERS THAT
MANY I THINK YOU SAID ARE NOT
SURE IT IS THEIR RESPONSIBILITY
TO DESIGN IN A WAY THAT ACCOUNTS
FOR ETHICAL OR SOCIAL
IMPLICAT
IMPLICATIONS.
RIGHT? WE HEARD IDEAS GENERATED
ACROSS THE PANEL ABOUT AI ETHICS
BOARDS AND SOMEBODY SAID BELL
MONT 2.0.
I WANTED TO -- MILDRED YOU
TALKED ABOUT TRAINING AND WANT
TO TAKE THAT A STEP FURTHER
GETTING PANEL'S REACTIONS IN
THINKING ABOUT WAYS IN WHICH
TECHNOLOGY WORKERS AND
DEVELOPERS ARE PROFESSIONLIZED
AND BRINGING US TO A EXAMPLE WE
ARE AWARE OF AND THINKING ABOUT
PHYSICIANS THERE IS A SORT OF
SOCIAL CONTRACT IN PLACE WITH
RESPECT TO PHYSICIANS; RIGHT?
THEY OPERATE WITH AUTONOMY AND
PRIF WILL ENL AND PUBLIC TRUST
AND IN RETURN THEY TAKE
HIPPOCATIC OATH AND AGREE TO PUT
PATI
PATIENT'S INTERESTS AHEAD OF
PROFESSIONAL INTERESTS; RIGHT?
I'M CURIOUS. THINK THERE IS A
WORLD IN WHICH WE THINK AND
BEYOND TRAINING IN HOW DIFFERENT
TECHNOLOGY WORKERS ARE
PROFESSIONALIZED AND SHOULD WE
THINK ABOUT A SOCIAL CONTRACT
AND DEVELOPMENT OF SOCIAL
CONTRACT FOR WORKERS AND BECAUSE
OF WHERE WE ARE HERE TODAY AND
HOW MIGHT NIH BE INVOLVED IN
THAT, IF SO.
>>YEAH. YOU HIT IT SPOT ON.
MEDICINE IS A CLASSIC
PROFESSION. THEY HAVE FIDUCIARY
SDUDYS. SCIENTISTS NOT REALLY
ENGINEERS, MAYBE. LIKE IT IS
EVEN AGAINST THE LAW FOR AN
ENGINEER TO DO SOMETHING AGAINST
PUBLIC SAFETY THAT ENDANGERS
PUBLIC SAFETY. THEY HAVE
LICENSURE.
WE ARE TALKING ABOUT HEALTH CARE
AND COMPUTER SCIENTISTS AND DATA
SCIENTISTS AND ENGINEERS AND
SOFTWARE ENGINEERS WORKING IN
HEALTH CARE AND NEEDS TO BE A
DIFFERENT TYPE THINKING ABOUT
WHAT IT MEANS DO YOU NEED A
LICENSE? NO AGREEMENT WHETHER
SOFTWARE OR ENGINEERS SHOULD
HAVE LICENSES THAT ARE NOT
REALLY REQUIRED TO AND IF
WORKING IN HEALTH CARE SPACE,
YOU SHOULD BE. MAYBE THAT MEANS
YOU HAVE TO HAVE SOME SORT OF
CERTAIN KINDS OF TRAINING THAT
MEANS YOU UNDERSTAND WHAT THE
DIFFERENT KINDS OF RISKS ARE.
WHEN I TALKED TO PEOPLE AT
COMPANIES THAT ARE MOSTLY LED BY
SOFTWARE DEVELOPERS YOU PROBABLY
HEARD SIMILAR THINGS THEY SAY WE
THINK ABOUT THOSE ETHICAL THINGS
AT BETA TESTS AND YOU SEE WITH
TESLAS AND WE ARE SUBJECTS OF
TESLA BETA TESTS OF SELF-DRIVING
SOFTWARE AND THINK THERE MIGHT
HAVE TO BE DIFFERENT KINDS OF
THINKING ABOUT WORKING IN -- IN
APPLICATIONS HAVING TO DO WITH
HEALTHCARE.
>>I WAS GOING TO SAY THAT COMES
DOWN TO PIECE OF ACCOUNTABILITY
AND WHEN ACCOUNTABILITY
STRUCTURES ARE IN PLACE THAT
BUILDS CREDIBILITY IN TRUST.
>>THANK YOU. MY QUESTION I'M
FROM UNIVERSITY OF WISCONSIN AND
MOR INSTITUTE FOR RESEARCH AND
QUESTION FOLLOWS DIRECTLY ON
THAT ONE. I WAS SORT OF
REFLECTING ON SOMETHING JAY SAID
ABOUT HOW TECHNOLOGY CYCLE IS SO
FAST AND GOVERNANCE IS HAPPENING
SO MUCH SLOWER AND COMMUNITY
ENGAGEMENTS ARE HAPPENING SO
MUCH SLOWER. I WAS THINKING
THAT IMPLICATION IS THAT NIH AND
MAYBE FDA AND EVERYBODY SHOULD
ADJUST TO TECHNOLOGY CYCLE
DEVELOPING IN CONTEXT OF NOT
HEALTH CARE BUT TO JUST SAY;
RIGHT?
ON OTHER HAND, THERE IS A WHOLE
INFRASTRUCTURE FOR HOW WE
IMPLEMENT NEW TECHNOLOGIES INTO
HEALTH CARE SYSTEM PARTICULARLY
DRUGS AND DEVICES THAT IS NOT A
PERFECT SYSTEM BY FAR.
IT IS ALSO A SYSTEM TAKING TIME
AND WHY SHOULD WE NOT EXPECT
THAT ALGORITHM WRITERS WILL SEE
THEMSELVES ONCE THEY ARE IN
CONTEXT OF DEVELOPING THINGS FOR
HEALTH CARE THAT IS AS PART OF A
REGULATED INDUSTRY WHERE THERE
IS A PROCESS THAT INVOLVES MORE
THAN ROLL IT OUT AND BETA TEST
IT; RIGHT?
THERE IS A PREMARKET TESTING
THAT HAS TO ACTUALLY HAPPEN AND
SOME ACCOUNTABILITY TO PEOPLE
WHO ARE SUPPOSED TO BE THINKING
ABOUT, YOU KNOW, SORT OF THE
PUBLIC'S INTEREST.
SO, I JUST PUT IT OUT THERE AND
THINK IT FOLLOWS REALLY NICELY
WITH WHAT WAS JUST SAID.
>>THANK YOU, PILAR. ANY
FOLLOW-UP COMMENTS?
>>I THINK IT IS AN INTERESTING
CONCEPT THAT I THINK IS WORTH
EXPLORING AND WILL REMIND
EVERYBODY THOUGH THAT LOTS OF
THE WORK WILL GO ON AT A VERY
RAPID PACE OUTSIDE OF THE US.
THERE IS REALLY REALLY COMPETENT
PEOPLE OUTSIDE OF THE US THAT
WON'T BE ENCUMBERED BY US
REGULATIONS ROLLING OUT AND
DOING THINGS AND MAYBE WE CAN'T
DO LOTS ABOUT THAT AND MAYBE WE
SHOULDN'T BUT THINK FIELD WILL
CONTINUE TO GO FORWARD ALMOST
REGARDLESS OF US REGULATION.
MIGHT BE A PIECE OF IT. DOESN'T
SOLVE WHOLE PROBLEM AS FAR AS I
CAN SEE GOING FORWARD.
>>TO POINT EARLIER, DOESN'T
MEAN NIH CAN'T BE A LEADER.
>>NOT SAYING WE SHOULDN'T
CONSIDER DOING IT BUT IF
IMPLEMENTED THEN PROBLEM IS
SOLVED.
>>YES.
>>I THINK IT WILL CONTINUE AT
RAPID PACE ELSEWHERE AND
INCREASINGLY RAPID TO US.
>>I WAS GOING TO BRING YOUR
COMMENT BACK TO WHAT LISA SAID
ABOUT THE ELEMENTS OF TRUST.
>>COMPETENCY IS ONE AND
LICENSURE PARTICULARLY FOCUSES
ON COMPETENCY DOESN'T FOCUS ON
TWO ELEMENTS INTEGRITY AND
BENEFICENCE PARTS OF IT.
>>IF YOU CAN BRING THOSE
COMPONENTS IN YOU CAN TRY TO
ALIGN LICENSURE AND
SELF-REGULATORY ELEMENTS WITH
ELEMENTS OF TRUST.
>>GREAT. WILL YOU GET LAST
QUESTION.
>>RUPA VALDEZ UNIVERSITY OF
VIRGINIA FOLLOWING UP ON
CONVERSATION AND COUPLE TO
REFLECT ON PROFIT AND TRUST AND
COMMON GOOD AND ONE THOUGHT I
HAD WAS IF WE ARE FRAMING
RATIONALE FOR PARTICIPATION
AROUND IDEA OF COMMON GOOD IT IS
DRIVEN IN INDUSTRY SETTINGS BY
PROFIT-BASED MOTIVE AND HAVING
AI UNDERSERVED AND THINKING
ABOUT THAT IN WAYS WHAT IS
INCENTIVE FOR EXPANDING AND WHO
IS INVOLVE THE AND IN TERMS OF
AI BENEFITS AND TIE-IN TO THAT
IS WHAT IT MEANS FOR TRUST AND
COMMUNITIES AND SAYING IF THIS
IS FOR COMMON GOOD AND CERTAIN
COMMUNITIES ARE NO THE SEEING
BENEFIT FOR A. I OR SEEING HARM
HOW DO WE BUILD TRUST IN THAT
SPACE AND COUPLED WITH THAT IS
IDEA OF PROFIT I WILL THROW OUT
RELATED TO INNOVATION AND
INTELLECTUAL PROPERTY AND
PUSHING US TO THINK ABOUT IF
YOUR DATA AND BEING IS BEING
USED FOR DEVELOPMENT OF
INNOVATION WHAT IS YOUR RIGHT TO
OWNERSHIP FROM PROFIT STEMMING
FROM INNOVATION AND PUBLIC FORM
AND IN THAT CASE AND WHAT IT
MEANS IN THIS CONTEXT?
>>TINY LITTLE QUESTION FOR OUR
LAST ONE.
>>SO, YOU EACH HAVE ABOUT 60
SECONDS TO RESPOND TO WHICHEVER
PIECE OF THAT RESONATED MOST.
MAYBE I WILL START HERE. I WILL
GO DOWN.
>>I DON'T KNOW WHERE TO START
WITH 60 SECONDS TO BE HONEST BUT
THINK THEY ARE ALL REALLY
IMPORTANT POINTS TO CONSIDER.
I THINK WE HAVE TO BE CAREFUL NO
THE TO GIVE QUICK ANSWERS TO
COMPLICATED QUESTIONS AND THOSE
ARE REALLY THORNY. THEY DON'T
HAVE SIMPLE AND QUICK SOLUTIONS
TO PACKAGE IN A FEW SOUND BITES.
WON'T TRY EXCEPT TO ENCOURAGE TO
ADD TO LIST OF THINGS THAT NEED
TO BE WORKED ON AND FIGURED OUT
THOUGHTFULLY AND REALISTICALLY.
>>THANK YOU. LISA?
>>EXCELLENT SERIES OF QUESTIONS
I APOLOGIZE I DON'T HAVE A GOOD
ANSWER TO BUT LOOK FORWARD TO
CONTINUING CONVERSATION ON AND
ONLY THING I WOULD SAY IS THIS
IS A VERY COMPLEX SPACE.
I DON'T THINK THAT MODEL OF REN
REETA LAX AND HELICELLS IS
CLEARLY TO SPACE THAT IS
DEVELOPING A PRODUCT BASED ON AI
THAT IS GOING TO REAP A PROFIT;
RIGHT?
THERE IS SO MANY DIFFERENT STEPS
IN THAT PROCESS. WE CAN
CERTAINLY TALK ABOUT SHOULD FROM
AN INTELLECTUAL PROPERTY
PERSPECTIVE SHOULD THERE BE MORE
DATA SHARING AND ACCESS TO DATA
SO THAT WE CAN DEMOCRATIZE
MACHINE LEARNING IN AI. I'M A
BIG BELIEVER IN THINKING DEEPLY
ABOUT THAT ISSUE AND HOW WE CAN
GET THERE.
I DON'T THINK THERE IS -- I
DON'T THINK IT IS CLEAR TO SAY
THAT, YOU KNOW, JUST BECAUSE I
CONTRIBUTED DATA AT THIS STAGE I
SHOULD REAP BENEFIT FINANCIALLY
FROM AN END PRODUCT MIGHT HAVE
BEEN DEVELOPED 5 YEARS LATER
WITH MULTIPLE DATA ITERATIONS
THAT IS A VERY COMPLICATED
PROCESS THAT I DON'T KNOW THAT
WE FIGURED IT OUT OR NEED TO
TEASE IT APART TO CLARIFY THAT
AND WE HAVE TO GET AT WHAT IS
THAT?
WILL IT REALLY SATISFY PEOPLE?
NOT AS CONVINCED IN TERMS OF,
YOU KNOW, HOW MUCH WE SHOULD PAY
PEOPLE FOR DIFFERENT PARTS OF
THEIR DATA THAT ARE GOING INTO
THE DEVELOPMENT OF A PRODUCT AND
IF PEOPLE ARE GOING TO FIND IT
SATISFYING IF IN WAY THAT THEY
MIGHT ANTICIPATE THEY ARE. SO,
DIFFICULT QUESTION THAT I'M
SORRY DON'T HAVE GOOD ANSWERS.
>>PUTTING OUT THERE QUICKLY
INTERESTING CONVERSATIONS GOING
AROUND BENEFIT SHARING WITH
NEGOYA RIGHT NOW THAT MIGHT BE
USEFUL TO THINK ABOUT.
>>MILDRED?
>>I MEAN, OBVIOUSLY NO GOOD
ANSWERS.
WE HAVE SOME PRECEDENT TO LOOK
AT IN TERMS OF PHARMACEUTICALS,
FOR EXAMPLE.
THAT IS A FOR PROFIT LARGELY FOR
PROFIT EXERCISE THAT IS NOT VERY
-- I MEAN, IT IS MESSED UP IF
YOU LOOK AT INSULIN PRICES, FOR
EXAMPLE P.
WHAT WE HAVE RELIED ON TO KIND
OF MITIGATE CONFLICT OF INTEREST
IS VERY HEAVY SCRUTINY ON SORT
OF THE SAFETY AND EFFICACY
ASPECTS OF PRODUCT AND WHERE WE
NEED TO PUT ATTENTION INTO THAT
SO THAT RECOGNIZING THAT THERE
IS CONFLICTS OF INTEREST THERE
AND THEY ARE FINANCIAL CONFLICTS
OF INTEREST THAT EVEN IF WE
CAN'T COMPLETELY ELIMINATE THEM
WE CAN MITIGATE THEM BY FOCUSING
ATTENTION ON POTENTIAL --
HEADING OFF BAD -- POTENTIALLY
BAD IMPACT OF CONFLICT OF
INTEREST.
>>I WILL ADD AND GIVE MONICA
LAST WORD THAT SAFETY AND
EFFICACY ARE INDIVIDUAL LEVEL
CONCERNS.
WE HEARD FROM FOLKS WE TALKED
WITH THEY ARE ALSO CONCERNED
ABOUT COMMUNITY AND COLLECTIVE
BENEFIT; RIGHT?
WE DON'T HAVE POLICY MECHANISMS
TO ADDRESS POPULATION LEVEL
IMPACTS.
>>RIGHT.
>>ALSO, BROAD SOCIAL.
>>YEAH.
>>IMPACTS.
>>I THINK TO THE COMMUNITY
BENEFIT PIECE AND MAYBE IN
RESPONSE TO WHAT LISA SHARED,
YOU KNOW, VERSUS WELL AN
INDIVIDUAL FEELING GOOD IF THEY
GRANTED THIS MONEY FOR A PRODUCT
TYPE OF THING AND THAT PIECE OF
COMMUNITY BENEFIT AND TYING TO
YOUR FIRST QUESTION YOU
MENTIONED AI COMMUNITY AND KNOW
FROM CONVERSATIONS WE HAD
LOOKING AT SOME OF THE
COMMUNITIES THAT ORGANIZATIONS
REPRESENTING COMMUNITIES I THINK
ONE PIECE I WOULD LEAVE US WITH
IS THINKING ABOUT THERE IS A
REAL VOCALIZATION OF IMPORTANCE
OF ACKNOWLEDGING KNOWLEDGE THAT,
THAT COMMUNITY HAS ABOUT ITSELF
AND ITS OWN HEALTH.
SO, I -- YOU KNOW, THERE IS A
PRESUPO SIGNIFICANCES THAT WE
APPROACHED EVEN IN THIS
PARTICULAR CONVENING TO CERTAIN
POPULATIONS ABOUT HOW TO
APPROACH THIS PROCESS.
AND I THINK THAT IS WHERE THERE
IS OPPORTUNITY FOR, YOU KNOW, IN
-- WHERE THERE IS OPPORTUNITY
FOR THAT INVOLVEMENT.
IT IS SPECIFICALLY TYING TO
COMMUNITY BENEFIT PIECE AND
SEEING ABILITY FOR WHATEVER TYPE
OF RESEARCH TO ACTUALLY HAVE
BEEN INFORMED BY COMMUNITIES OF
WHAT IS THE VALUE SET AND WHAT
IS IMPORTANT AND HERE IS WHAT WE
ALREADY KNOW THAT IS A PIECE,
IMPORTANT PIECE OF THIS, YOU
KNOW, WHAT WE ARE TRYING TO
ADDRESS AND AT BACK END OF IT,
THEN WHAT IS -- WHAT ARE
TANGIBLE COMPONENTS THAT MIGHT
BE MONETARY AND MIGHT BE IN
OTHER -- MIGHT BE IN POLICIES OR
SERVICES OR OTHER GOVERNMENT,
YOU KNOW, INFRASTRUCTURE THAT IS
BUILT THAT THEN BENEFITS
COMMUNITY DIRECTLY. I THINK
THAT IS AN OPPORTUNITY THAT I
HOPE TO SEE COME OUT OF THIS.
>>YEAH.
>>WONDERFUL.
BEFORE I THANK THE PANEL, I WANT
TO LET THE ONLINE AUDIENCE KNOW
THERE IS NO BREAK BETWEEN THIS
PANEL AND PANEL 3. WE WILL TAKE
5 MINUTES TO TRANSITION AND
PANEL 3 FOLKS CAN COME UP. IN
MEANTIME, I WANT TO THANK ALL OF
YOU SO VERY MUCH NOT ONLY FOR
BEING HERE AND FOR YOUR
THOUGHTFUL COMMENTS.
>>THANK YOU.
>>[APPLAUSE].
>>>>ALL RIGHT. IF WE CAN HAVE
QUESTIONS AT THIS E-MAIL
AT NIH AND IF WE CAN HAVE THE
NEXT SLIDE, PLEASE.
SO, SCENARIOS IN ENGAGEMENTS
FOCUSING PARTICULARLY ON --
PARTICULARLY FOCUSED ON DATA
LINKAGE AND SOME SCENARIOS AND
PURPOSE WAS TO CONTEXTUALIZE
GETTING PUBLIC FEED BACK ABOUT
SOME REALISTIC OR SORT OF
REALISTIC SITUATIONS IN WHICH
RESEARCH WOULD BE CONDUCTED AND
THEIR DATA WOULD BE LINKED.
AND SO IF WE CAN HAVE THE NEXT
SLIDE.
ISSUES COMING OUT, RIGHT,
PARTICIPANTS ARE SKEPTICAL ABOUT
DATA LINKAGE ALONG NUMBERS OF
DIFFERENT DIMENSIONS AND WILL
ASK RONNIE TO EXPAND ON THAT
POINT A LITTLE BIT.
THEY SUPPORTED DOING OF DATA
LINKAGE OF A VARIETY OF WAYS
PARTICULARLY THOUGH WHEN IT WAS
FOCUSED ON RESEARCH THAT COULD
IMPROVE HEALTH.
FINALLY, THEY WERE -- AS WE HAVE
HEARD IN OTHER CONTEXTS, THEY
WERE PRETTY WEARY OF COMMERCIAL
A- ASPECTS OF THIS AND
POSSIBILITY THAT COMMERCIAL
ENTITIES WOULD HAVE ACCESS TO
LINKED DATA OR BE INVOLVED IN
LINK
LINKING.
WHICH IS INTERESTING BECAUSE OF
COURSE IN MANY CASES AS
BIOMEDICAL RESEARCHERS OR
PUBLICLY FUNDED RESEARCHERS WE
MIGHT GET DATA FROM COMMERCIAL
ENTITY TO DO THAT LINKAGE.
NONETHELESS, ROLE OF COMMERCIAL
ENTITIES IN THIS WERE RAISING
CONCERNS FOR PEOPLE.
OUR FIRST QUESTION IN ALL OF THE
PANELS IS SORT OF TO ASK OUR
PARTICIPANTS OR PANELISTS RATHER
THEIR INITIAL IMPRESSIONS AND
ANYTHING THAT SURPRISED YOU. I
GUESS I WOULD START WITH RONNIE.
I WOULD EXPAND ALSO AND ASK YOU
IF YOU CAN SAY A LITTLE MORE
ABOUT WHAT -- HOW SOME
SKEPTICISM ABOUT DATA LINKAGE
MANIFESTED.
>>HAPPY TO.
FIRST OF ALL, THANK YOU, PILAR.
WE ARE TOGETHER AT A COMMUNITY
CONVERSATION AND GOOD TO SEE YOU
AGAIN AND THANK YOU TO THE
OFFICE OF SCIENCE POLICY FOR
INVITING PYXIS TEAM TO BE PART
OF THE PROJECT AND WE LEARNED A
TON THAT HAS BEEN REALLY
GRATIFYING TO BE PART OF THIS
PROCESS.
THANK YOU FOR THE OPPORTUNITY TO
BE HERE TODAY TO BRING VOICES OF
THOSE WE ENGAGED WITH TO THIS
CONVERSATION AND TO THAT POINT I
THINK IT HAS BEEN A LONG DAY.
I WANT TO REMIND PEOPLE OF
PERSPECTIVES COLBY AND MONICA
AND MYSELF WILL TALK ABOUT ON
THIS PANEL AND REMINDING PEOPLE
THAT WE WORKED IN PARTNERSHIP
WITH OFFICE OF SCIENCE POLICY
AND WORKING GROUP OVER FOUR
MONTHS AND WENT TO 6 LOCATIONS
AROUND THE COUNTRY AND DID A
HANDFUL OF WEBINARS SPEAKING
WITH ABOUT 160 PEOPLE AND THOSE
WERE 160 PEOPLE.
THEY WERE NOT REFLECTIVE OF
COMMUNITIES BUT REFLECTIVE OF
THEMSELVES; RIGHT?
WE LITERALLY SCRATCHED THE
SURFACE. I THINK THAT WE WILL
BRING WHAT WE HEARD AND WE ARE
BRINGING WHAT WE HEARD.
THERE IS SO MUCH MORE WORK TO BE
DONE. THAT CAME UP IN THE FIRST
AND SECOND PANEL. WE WILL HEAR
AGAIN IN CONVERSATIONS AND IS A
GOOD REMINDER CLOSING OUT
CONVERSATIONS WITH THIS THIRD
PANEL THAT WE CERTAINLY DIDN'T
HEAR FROM ANYBODY. WE HEARD
FROM A DIVERSITY OF VOICES AND
COMMUNITIES BUT LITERALLY JUST
SCRATCHED THE SURFACE. I
THOUGHT I WOULD START -- I KNOW
WE WILL HAVE A LONGER
CONVERSATION. I HAVE
FOUR-POINTS I WANTED TO MAKE TO
PROVIDE CONTEXT TO THE
CONVERSATION.
SO, ONE, YOU KNOW, THIS TOPIC
AROUND DATA LINKAGE.
IT WAS THE MOST CHALLENGING, I
WOULD SAY IN TERMS OF EXPLAINING
CONCEPTS TO DIFFERENT COMMUNITY
MEMBERS WE SPOKE WITH AND WE
USED CASE STUDY AND CREATED YOU
SEE A SNAPSHOT HERE IN YOUR
PACKET AS WELL AND CREATED USING
INFOGRAPHICS THAT IS DIFFERENT
TO WAY WE PRESENTED THESE TOPIC
AREAS AND OTHER WAY THIS WAS
DIFFERENT WAS IN FIRST TWO TOPIC
AREAS WE HAD TWO DIFFERENT CASE
STUDIES WE VARIED.
COMMUNITY CASE STUDIES WE USED
WE USED ONE AND IN SOME WE USE
THE OTHER AND WE ALTERNATED.
THIS WAS A CONSTANT AND WE USE
SAME CASE STUDY IN INFOGRAPHIC
ACROSS ALL CONVERSATIONS WE HAD
AND OTHER WAY THIS WAS DIFFERENT
IS THIS IS A VERITIERATIVE
PROCESS AND IS IMPORTANT TO NOTE
THAT. WE LEARNED A LOT WHEN --
FROM FIRST CONVERSATION WE HAD
IN HARLEM UNTIL THE LAST ONE WE
HAD.
WE REALIZED WE WOULD DO A
DEBRIEF WITH TEAM AND WITH NIH
TEAM.
WHAT DID WE LEARN AND WHAT
WORKED WELL AND WHAT WE CAN
ADJUST. EVERY TIME WE HAD
CONVERSATIONS WE CHANGE THINGS
UP A LITTLE BIT BASED ON WHAT WE
LEARNED.
PART OF WHAT WE CHANGED UP WE
TRIED TO IDENTIFY PLACES WHERE
COMMUNITY MEMBER SEEMS TO GET
STUCK IN TERMS OF HOW WE EXPLAIN
THE PROCESS AND HOW LINKAGE
WORKED.
IT WAS REALLY INTERESTING.
SO, WE WENT THROUGH A NUMBER OF
VERSIONS THAT ARE IN TERMS OF
INFOGRAPHIC AND EXPLAINING IT.
I THINK THAT WHAT IT TAUGHT US
IS THAT THERE IS SOMETHING THAT
JEN YOU BROUGHT UP IN YOUR
PANEL. IT WAS THAT WE WERE
INTRODUCING ASSUMPTIONS.
IN THE CASE STUDY AND IN TERMS
OF WHAT PEOPLE UNDERSTOOD AND
HOW THEY THOUGHT ABOUT THINGS
AND REALIZED THAT WE NEEDED TO
EITHER BACK UP A LITTLE BIT OR
EXPLAIN THINGS IN A DIFFERENT
WAY.
I THINK THAT IS IMPORTANT IN
TERMS OF CONTEXTUALIZING THIS
TOPIC.
SECOND THING WE HEARD IN A
NUMBER OF CONVERSATIONS WAS THAT
EVEN THOUGH THE PARTICIPANTS IN
THIS PARTICULAR CASE STUDY,
REACTION WAS THAT EVEN THOUGH
SOMEBODY MIGHT HAVE CONCEPTED
FOR DATA TO BE USED IN FUTURE
STUDIES AND THAT IS TO JAY'S
POINT WHO TERRIFIED ME, BY THE
WAY, BY WHAT YOU SAID.
BY TIME WE ARE DONE WITH THIS
CONVERSATION WE WILL BE IN NEXT
GENERATION OF TECHNOLOGY AND BY
TIME WE LEAVE THIS ROOM, EVEN
THOUGH PARTICIPANTS IN CASE
STUDY CONSENTED FOR INFORMATION
TO BE USED IN FUTURE STUDIES,
TECHNOLOGY IS EVOLVING SO
QUICKLY, THEY ARE NOT EVEN SURE
WHAT IT IS THEY ARE CONSENTING
TO.
SO, YOU KNOW, SOME NOTED THERE
IS A POINT IN TIME IN WHICH
SOMEBODY CIRCLES BACK TO THEM TO
EXPLAIN WHAT IT IS THEY ARE
ACTUALLY CONSENTING TO.
BECAUSE, YOU KNOW, EVERYTHING IS
MOVING SO QUICKLY.
YOU KNOW, THERE IS A QUOTE
TALKING INTERNALLY AS A TEAM
THAT WE ARE PREPARING FOR THIS
CONVERSATION WE PULLED OUT.
SOMEBODY SAID IT IS NOT CART
BLANCH BUT ALA CART. IT WAS
REALLY INTERESTING AND WORTH
SHARING AND THIRD THING IS I
ONLY HAVE FOUR.
OTHER THING WE HEARD FROM A
NUMBER OF PARTICIPANTS IN
CONVERSATIONS IS THAT IN TERMS
OF LINKING DATA SETS THAT ARE
OTHER THAN HEALTH RELATED DATA
AND WHEN INTRODUCING IDEAS ABOUT
LINKING CRIME AND HOUSING AND
CENSUS DATA, PARTICIPANTS WANTED
TO BETTER UNDERSTAND WHY. WHY
WOULD YOU WANT TO DO THAT.
WHAT RESEARCH WOULD IT HELP TO
INFORM?
HOW WOULD BENEFIT BE RETURNED TO
COMMUNITY WITHOUT IT BEING
STIGMATIZING.
YOU KNOW, SO, I THINK THAT IN
TERMS OF PRESENTING AN
OPPORTUNITY, I THINK WILL IS AN
OPPORTUNITY TO BE ARMED WITH
ANSWERS TO THOSE QUESTIONS TO GO
INTO COMMUNITIES TO ASK FOR
INFORMATION.
OR TO PRESENT THE OPPORTUNITY.
THE 4TH, NO SHOCKER. IT IS
AROUND TRUST.
YOU KNOW, THIS CAME UP IN ALL
THREE AREAS THAT WE TALKED ABOUT
IN EVERY SINGLE CONVENING.
YOU KNOW, THIS ALSO CAME UP IN
PREVIOUS PANELS AND, YOU KNOW,
FROM MY PERSPECTIVE I DON'T
REMEMBER WHO RAISED IT. A
COUPLE PANELISTS RAISE THE IT.
IT IS REALLY ABOUT, YES. THIS
PROCESS HAS BEEN AMAZING.
THERE WAS TONS OF RICH INSIGHT
THAT WAS GENERATED FROM ALL
COMMUNITY MEMBERS THAT
PARTICIPATED.
BUT THIS WAS PHASE 2 OF A
PROJECT; RIGHT?
AND A NUMBER OF PANELISTS HAVE
INDICATED THAT IF WE REALLY
WANTED TO DO THINGS DIFFERENTLY,
YOU NEED TO ALMOST FLIP IT AND
SHIFT THE ENTIRE PARADIGM AND
COMMUNITY ENGAGEMENT NEEDS TO BE
THRU LINE THROUGHOUT THE ENTIRE
PROCESS AND SO, YOU KNOW, WHEN
WE TALK ABOUT TRUST BUILDING, WE
WENT TO COMMUNITIES WITH CASE
STUDIES THAT WERE DEVELOPED FROM
RESEARCH QUESTIONS THAT THE
RESEARCH COMMUNITY DECIDED THAT
THEY WERE IMPORTANT. WE BROUGHT
THEM TO THE COMMUNITY AND ASKED
THEM HOW THEY FELT ABOUT THOSE
TOPICS AND HOW THEY WOULD WEIGH
BENEFITS AND RISKS OPPOSED TO
ASKING THEM WHAT ARE RESEARCH
ADVANCES THAT WOULD BE OF MOST
BENEFIT TO YOUR COMMUNITY AND
HOW WOULD YOU WEIGH THE BENEFITS
AND RISKS?
SO, I JUST THINK THAT, YOU KNOW,
THAT IS IMPORTANT TO
CONTEXTUALIZE CONVERSATION IN
THAT WAY.
I WILL STOP THERE.
>>GREAT. THANKS SO MUCH.
SEAN, LET'S COME DOWN.
>>SURE, SURE. WHEN I'M SUPPOSE
THE TO START TO TALK I GET A
TICKLE IN MY THROAT AND PARDON
ME IF I HAVE TO STOP AND TAKE
CARE OF THAT THROUGHOUT THIS.
AGAIN, CONTEXT FOR ME, I HAVE
BEEN IN MEDICAL INFORMATICS FOR
NOW 21 YEARS.
MY SECOND DAY OF FELLOWSHIP BACK
IN 2001 AND MY MENTOR CAME TO ME
AND SAID THERE IS NOT A LOT OF
PEOPLE WORKING ON RECORD LINKAGE
AND PASH YENTD MATCHING AND
BRINGING THIS TOGETHER AND WOULD
YOU LIKE TO WORK ON THAT?
YES. I HAVE WORKED IN THAT
SPACE FOR 20 YEARS AND WORKED
WITH COUNTRIES TO SET UP LINKAGE
PROCESS FOR HEALTH CARE AND GOT
FUNDING FROM NIH RIGHT NOW.
IN PARTICULAR CURRENTLY I HAVE A
PACORI GRANT PATIENT CENTERED
OUTCOME RESEARCH AND LINKING
PATIENTS AND DATA TOGETHER AND
USING DEIDENTIFIED TECHNIQUES.
BECAUSE THIS WAS A PACORI
PROJECT ONE ACTIVITY WE
CONDUCTED IS A FOCUS GROUP
LOOKING AT UNDERSTANDING WHAT
PATIENTS DO AND DON'T UNDERSTAND
ABOUT THIS TOPIC AND IS
CHALLENGE RING TO EXPLAIN TO
PEOPLE AND ABSOLUTELY IS. SO,
TAKE THIS. PATIENT MATCHING IS
PERSONAL. IT IS ABOUT YOUR
IDENTITY AND GOES TO THE HEART
OF WHO PEOPLE ARE. WHEN THEY
HEAR ABOUT FACT THAT WAIT A
MINUTE. YOU ARE GOING TO -- YOU
KNOW, SO MANY TIMES TODAY WE GET
A CREEPY FEELING WHEN GOOGLE
GIVES AN AD IMMEDIATE WILL I
AFTER WE TALK ABOUT SOMETHING
AND IS AN UNSETTLING FEELING.
IF YOU GET THAT UNSETTLING
FEELING IN HEALTHCARE, EVEN
WORSE. IT IS VERY IMPORTANT FOR
PEOPLE TO UNDERSTAND THAT
VISCERAL RESPONSE THAT PEOPLE
GET WHEN WE START TO TALK ABOUT
PATIENT MATCHING AND IDENTITY
MATCHING AND SIMILAR FOR OTHER
THINGS AND AI WORK AND MAKING
INFERENCES YOU MIGHT NOT KNOW
EVEN ABOUT YOURSELF AND DURING
FOCUS GROUPS THERE IS -- TELL ME
IF YOU THINK THERE IS A CERTAIN
THEME OR PATTERN REEMERGING.
WE SAW FOUR ISSUES:
TRANSPARENCY, ACCESS AND
CONTROL, TYPE OF USE, AND HOW
DATA WAS GOING TO BE SECURED.
SO, THERE WERE REGARDING
TRANSPARENCY, THERE WERE PEOPLE
WANTING TO UNDERSTAND HOW THIR
DATA IS BEING USED. WE HEARD
THAT MULTIPLE TIMES TODAY.
I THINK IF YOU REMEMBER NOTHING
FROM THIS CONFERENCE, PATIENTS
WANT TO KNOW HOW THEIR DATA IS
BEING USED.
IN TERMS OF ACCESS AND CONTROL,
THEY -- PATIENTS WANT TO FEEL A
SENSE OF OWNERSHIP OF THEIR
DATA.
AND FEEL LIKE THEY HAVE SOME
SORT OF ABILITY TO MANAGE THAT
INFORMATION.
IN OUR FOCUS GROUPS, THE
GREATEST FEAR THAT WAS EXPRESSED
BY THE INDIVIDUALS WAS THE
POTENTIAL FOR LONG-TERM USE OF
ELECTRONIC HEALTH RECORD DATA IT
THAT IS ON VARIOUS SCALES WE
LOOKED AT THAT IS OF GREATEST
FEAR AND CONCERN AND MANY PEOPLE
EXPRESSED CONCERN ABOUT, YOU
KNOW, WE ALREADY TALKED ABOUT IS
THERE POTENTIAL FOR USING LINKED
DATA FOR, YOU KNOW, STIGMATIZING
OR MARGINALIZE THE FOLKS.
THERE IS ALSO -- MAYBE I DON'T
WANT MY DATA USED IN A
PARTICULAR PROJECT THAT I'M NOT
IN FAVOR OF OR DON'T SUPPORT OR
DON'T HAVE ISSUES ABOUT.
SO, THOSE ARE THE TYPES OF
CONCERNS AND I THINK THAT GETS,
AGAIN, TO AGENCY IN THIS
PROCESS.
THE WORKING THAT WE DID AND OUR
DOING RIGHT NOW AS I MENTIONED
THROUGH PACORI IS USING
SOMETHING CALLED PRIVACY
PRESERVING RECORD LINKAGE, PPRL.
I SEE SOME HEADS SHAKING IN THE
ROOM. IT IS A RAPIDLY GROWING
EMERGING METHOD FOR LINKING
PATIENT DATA IN A WAY THAT DOES
NOT EXPOSE IDENTITY.
THAT TAKES A LITTLE GETTING USED
TO. WAIT A MINUTE. WHAT?
YOU ARE LINKING PEOPLE TOGETHER
BUT DON'T KNOW WHAT THEY ARE AND
WHAT PPL IS AND NIH RIGHT NOW
DURING COVID CREATED NATIONAL
COV
COVID. CLINICAL DATA IS SENT TO
ONE REPOSITORY AND IDENTITY DATE
ATHAW IS DEIDENTIFIED, TAKES A
DIFFERENT PANEL. USING
DEIDENTIFIED METHODS, WE CAN MAP
UNKNOWN INDIVIDUALS TOGETHER TO
SAY WE KNOW THAT THESE PEOPLE
ARE THE SAME PERSON BUT WE DON'T
KNOW WHO THEY ARE.
THIS CONCEPT OF SEPARATING THE
CONCERNS AND PAYLOAD DATA FROM
IDENTITY DATA AND KEEPING THOSE
SEPARATE AND MANAGED
DRAMATICALLY REDUCED LEVEL OF
CONCERN ABOUT WHAT PEOPLE HAD
ABOUT HOW THEIR DATA WAS BEING
USE THE NOT ONLY BECAUSE -- I
THINK WE DID A FAIRLY DECENT JOB
OF EXPLAINING TECHNOLOGY AND I
PROMISE YOU, IT IS SECURE.
SOMETIMES THEY BELIEVE US.
BUT, I THINK WHAT MANY PEOPLE
EXPRESSED WAS THAT THEY SAW WE
WERE CONSIDERATE OF THEIR
FEELINGS AND CONCERNS AND TO
SEE, WOW. THEY HAVE ACTUALLY --
THEY HAVE PEELED APART THE
SYSTEM TO MAKE SHOOUR THAT SOME
STUFF I AM CONCERNED ABOUT IS
ACCOUNTED FOR AND ACCOMMODATED
AND THINK THAT IS ANOTHER PART
OF THIS STORY THAT WE NEED TO BE
THINKING ABOUT.
WAS I SURPRISED BY OUTCOMES?
ABSOLUTELY NOT. WE HAVE SEEN
THIS, AGAIN, THROUGHOUT THE DAY.
I DO THINK WE WILL PROBABLY TALK
ABOUT THIS LATER. THERE IS, I
THINK, EMERGING STRATEGIES TO
ADDRESS MANY ISSUES.
THANK YOU.
>>[INDISCERNIBLE]?
>>GREAT. WELL, THANK YOU FOR
THE INTRO.
I HAVE A FEW POINTS ALSO THAT
CAME FROM THE DISCUSSIONS OF
OTHER PANELS.
TRUST DEFINITELY COMES IN
WHETHER IT IS EXCLUSIVE TO AI
PROBABLY BECAUSE WE JUST NEED
MORE DATA IN AI.
STATISTICAL MODELS BEFORE AND
DATA SHARING AND ALL ISSUES THAT
WERE THERE. WHEN IT COMES ABOUT
TRANSPARENCY, I WOULD TELL YOU
WHAT I WAS WATCHING THE NEWS
YESTERDAY. I WANTED TO WATCH
LOCAL NEWS.
I MOVED AWAY FROM HERE.
AND THE HEADLINE WAS PANDEMIC IS
OVER ON TUESDAY.
I THOUGHT THAT WAS QUITE -- IT
CAUGHT MY ATTENTION; RIGHT?
I SAID THAT IS GREAT. IT IS
OVER.
AND WHAT DID THEY MEAN BY THAT?
EMERGENCY STATE WAS NOT -- NO
LONGER APPLICABLE.
WHAT DOES IT MEAN FOR ALL OF THE
ELECTRONIC RECORDS THAT WERE
SHARED IN A STATE OF EMERGENCY.
WHAT HAPPENS TO THOSE?
THAT WAS A GOOD THING TO THINK
ABOUT.
THE OTHER THING IT OFTEN COMES
WHEN I EXPLAIN PRIVACY
PRESERVING RECORD LINKAGE IS
NAME ITSELF DOESN'T GUARANTEE
PRIVACY. IN FACT, WHENEVER YOU
LINK SOMETHING, YOU ARE MAKING
IT LESS PRIVATE.
YOU ARE INCREASING THE CHANCES
OF RE-IDENTIFYING AND YOU ARE
MAKING A RECORD THAT IS MORE
MATCHABLE TO EXTERNAL
INFORMATION THAT YOU HAVE. I
THINK THAT IS ULTRA IMPORTANT TO
SAY THAT PRIVACY PRESERVING
RECORD LINKAGE ONLY MEANS YOU
ARE NOT SHARING EXPLICIT
IDENTIFIERS AND ALL THERE IS TO
IT.
IF YOU OWN HALF OF DATA BEING
SHARED, YOU AUTOMATICALLY CAN
MATCH AND FIND MORE INFORMATION
ABOUT THAT PARTICULAR PERSON.
IT IS NOT PRIVACY PROTECTING FOR
AT LEAST ONE PARTY THAT HAS DATA
MATCHED AND IS IMPORTANT TO SAY
IN NAME OF IT, IT IS MISLEADING
IN CERTAIN CIRCLES AND I WORK A
LOT WITH PRIVACY TECHNOLOGY AND
METHODS TO OBSCURE DATA AND SO
ON. BOTTOM LINE IS IF DATA IS
TO BE USEFUL, THEY CANNOT BE
COMPLETELY ANONYMIZED; RIGHT?
PERSONALIZED MEDICINE AND
PRECISION MEDICINE IS ALL ABOUT
INDIVIDUAL. IF YOU ARE NOT
GOING TO GET TO PARTICULARS OF
THE INDIVIDUAL, IT IS NOT THAT
HELPFUL.
SO, EVEN WHEN PROMISED DATA
WON'T LEAVE ENCLAVE AND LEARNING
AND SO ON BY ITSELF IT DOESN'T
PREVENT PRIVACY BREACHES TO
OCCUR AND GO INTO ENCLAVE DOING
CALCULATION LEARNING SOMETHING
ABOUT SOMEONE ELSE AND THAT IS
IMPORTANT TO SAY.
ONE THING THAT SURPRISED ME IS
PARTICIPANTS TENDED TO SAY IT IS
OKAY TO LINK TO ASK FOR
RECRUITMENT AND IT IS BETTER
WHEN IT IS COMPLETELY ANONYMIZED
AND THOSE TWO THINGS CANNOT GO
TOGET
TOGETHER.
COMPLETELY ANONYMIZED DOESN'T
EXIST AND IS ON GDPRS MAKING IT
TOTALLY IMPOSSIBLE TO SHARE IN
THAT PARTICULAR SCENARIO AND
HEARD EARLIER TODAY ABOUT MODELS
BENEFITING ALL AND WE EVOLVE TO
MOD EMS MAKING IT EXPLICIT TO
WHO IS APPLICABLE AND VEHICLES
AND CARGO AND FOR LUXURY CAR AND
KNOWING WHICH IS WHICH WILL BE
AN IMPORTANT THING. I AGREE
THERE NEEDS TO BE AN INDEX OR
CATALOGUE WITH METADATA AND
ANOTHER THING TO PAY ATTENTION
TO AND MODELS THAT MAY CHANGE
PRACTICE AND UNLESS YOU HAVE A
CONTROLLED ARM TO KNOW EFFECT OF
INTERVENTION YOU WON'T KNOW AND
YOU CHANGE PRACTICES AND IT WILL
BE VERY HARD.
LAST RELATED TO CONSENT FOR
RESEARCHERS AND WHAT IS LACKING
AND IS DIFFICULT TO DO SAID
INDICATION FOR PUBLIC ON ITEMS
NOTHING IS PRIVATE AND PROS AND
CONS AND PEOPLE MENTIONED HERE
IT IS OKAY FOR IMPORTANT
RESEARCH WHAT IS IMPORTANT FOR
YOU IS NOT FOR ME AND DATA
SENSITIVE TO ME MIGHT NOT BE TO
YOU. THERE IS A LOT THERE TO BE
LEAR
LEARNED.
>>THANK YOU.
>>WELL, THANK YOU SO MUCH FOR
THE INVITE AND FOR SHARING
RESULTS OF YOUR WORK.
THERE IS ANOTHER. I WOULD LIKE
TO SHARE PREPUBLISHED FINDINGS
MIXED STUDIES I DID FOR
PARTICULARLY TRIBAL MEMBERS
ASSESSING DATA SHARING PRIVACY
AND DEPOSITION AND SOME COMMENTS
ARE HIGHLY RELEVANT.
I WANTED TO SHARE A FEW QUOTES
AND A FEW FINDINGS.
ONE, INDIGENOUS PEOPLES ARE
CONCERNED ABOUT CONSENT OF DATA
AND USE OF STUDIES -- AS HIGHEST
CONCERN AND HIGHER COMPARED TO
WHETHER OR NOT THEY WILL HAVE
RESULTS OF DATA RETURNED TO THEM
AND QUOTE I WANT TO KNOW WHO IS
LOOKING AT MY DNA AND OUR JEANS
AND BY EXTENSION DATA THAT IS AN
INTRIGUING CONCEPT THAT AS
RESEARCHERS WANT THIS IT SHOULD
BE A TWO-WAY STREET AND
FACILITATING TRANSPARENCY AND
THOSE ACCESSING DATA MIGHT
FOSTER TRUST AND SHOULD BE ABLE
TO RESERVE RIGHT WHO WILL USE
DATA AND WHAT THEY WILL USE IT
ON AND THIS IS HORRIBLE AND
HORRIFYING TO ME AND WE DON'T
LITERALLY OWN ANYTHING ANYMORE
EVEN STATISTICS THAT RAISES
QUESTIONS ABOUT DATA OWNERSHIP
AND STEWARDSHIP AND HOW IT PLAYS
OUT IN PRIVATE SECTOR AND IN
TERMS OFLENESS TO PARTICIPATE
AND IN STUDIES BASED OFF WHO IS
FUNDING OR LEADING IT SURVEY
RESPONDENTS WERE -- YOU KNOW,
EXPRESS WILLINGNESS PARTICIPATE
IN STUDIES IN HEALTH SERVICES
AND NON-PROFIT ORGANIZATIONS AND
RANKED NON-NIH INSTITUTIONS AND
PHARMACEUTICAL COMPANIES DEAD
LAST. 73% TOP RATED COMPARED TO
PHARMACEUTICAL COMPANIES AT 36%
AND WERE RATED LESS IN TERMS OF
TRUSTWORTHINESS AND THERE IS A
HUGE STRONG NUMBER OF EXCERPT
DEMONSTRATING STRONGEST TRUST OF
US GOVERNMENT AND STATED IT IS A
SCARY TOPIC AND IS FOR PEOPLE
AND MANDATE ON RESERVATION
CONTROLLING DATA AND EVERYTHING
AND HOW WE LIVE AND FUNDING WE
WILL GET IF WE GET FUNDING AND
PARTICIPANTS FELT TRIBES SHOULD
HAVE DATA SHARING PROTOCOLS IN
PLACE AND SHOULD BE CODIFIED
UNDER TRIBAL LAW AND WOULD FEEL
BETTER IF TRIBES WERE EXEMPT
FROM THE GET-GO AND FELT MORE
COMFORTABLE ABOUT HAVING DATA IN
TRIBALLY MANAGED REPOSITORY HELD
MORE LOCALLY AND IN PLACE THEY
COULD PHYSICALLY SEE AND THOSE
ARE FINDINGS TO CONTEXTUALIZE IN
SPACE THAT PEOPLE ARE NOT REALLY
UNDERSTANDING ABOUT IN TERMS OF
WHAT HEALTH CARE SPACE LOOKS
LIKE AND WHAT HEALTH SERVICES
DATA SPACE LOOKS LIKE FOR US.
MOST AMERICANS WE ACKNOWLEDGE
THAT HEALTH CARE IS INCREDIBLY
FRACTIONATED AND IS MORESO FOR
ALASKA NATIVES AND AMERICAN
INDIANS DUE TO CHRONIC FUNDING
AND RECRUITMENT OF AI AND USE OF
CLINICAL DATA OUTSIDE OF TRIBAL
JURISDICTION IS AN ETHICAL ISSUE
IN UNDERMINING INDIGENOUS
SOVEREIGNTIES AND CONSENT AND
RELATING TO TRIBAL OVERSIGHT AND
NIH ITSELF BY FEDERAL
PROGRAMMING AND MANAGEMENT AND
RESEARCH OVERSIGHT AND FOR
INSTANCE TRIBAL NATIONS THAT
DON'T HAVE IRBS OR IRRBS THAT IS
94% OF THEM IS IT APPROPRIATE TO
DEFAULT TO USING IHS IRBS
CONCERNING RESEARCH OUTSIDE OF
IHS AND TRIBAL COMMUNITIES THAT
DON'T HAVE RECORDS AND SHAWN AND
I HAD FASCINATING CONVERSATION
OVER LUNCH I WORKED WITH A TRIBE
IN NORTH DAKOTA THEY USED
RECORDS OVER A DECADE AGO AND
PAPER COPIES SCANNED INTO THE
RECORD WITH HUGE IMPLICATIONS
HOW TO CONDUCT LONGITUDINAL
COORDINATION STUDIES AND
THINKING ABOUT HARMONIZATION AND
HESITATE TO DRAW ATTENTION TO
THIS NEEDS TO BE EXPLORED AT
COMMUNITY LEVEL AND GENA GENETIC
INFORMATION ON DISCRIMINATION
ACT DOESN'T PROTECT IHS
PARTICIPANTS THINKING ABOUT
HARMONIZING ACROSS DATA SYSTEMS
INCLUDING GENOMIC INFORMATION
COULD HAVE HUGE UNINTENDED
CONSEQUENCES AND THERE IS RETURN
OF THE DATA AND THERE IS A LOT
OF QUESTIONS AND IS IN RESPONSE
TO SCENARIO AND LOT OF QUESTIONS
AND CONCERNS RELATING TO
INDIVIDUAL IDENTIFIERS IN TERMS
OF REPACKING AND
RE-IDENTIFICATION AND
REIFICATION ABOUT RACIAL PURITY
ABOUT TRIBES AND THIS RISK IS
HEIGHTENED IN LINKAGE SYSTEMS
AND DIFFERENT REGULATIONS
INCLUDING PUBLIC HEALTH SECTOR
AND STATE EPIDEMIOLOGICAL
DATABASES AND OTHER FORMS OF
DATA SETS.
BRINGING UP EXAMPLES OF STUDIES
THAT WERE ROOTED IN SEATTLE AREA
WHERE THEY HAD A BUNCH OF
INDIGENOUS WOMEN WHO WERE
PATIENTS AT URBAN HEALTH CARE
CENTER RE-IDENTIFYING THEIR
TRIBAL STATUS BY HARMONIZING
WITH STATE CANCER DATABASES AND
REEFFECTIVELY REIDENTIFIED
TRIBES WITHOUT TRIBAL COMMUNITY
CONSENT. THIS WAS MEANT TO SORT
OF ADD TO THE VALIDITY OF -- OF
-- OF BIOLOGICAL ASSUMPTIONS
RELATED TO INDINL NEIGHTY ROOTED
IN DNA THAT THERE IS A LOT OF
QUESTIONS THERE AND IN TERMS OF
NEXT 5 YEARS WHAT ARE THINGS WE
SHOULD THINK OF?
1, WHO IS DATA DEFINITIONS
BENEFITING AND HUMAN VERSUS
NON-HUMAN AND DOES DEIDENTIFYING
DATA REMOVE RISKS TO THE
INDIVIDUAL IN THE GROUP AND
CONCEPT, LOTS OF THIS IS WESTERN
AND INDIVIDUALIZED AND
DEFINITIONS ARE ROOTED IN 1960S
AND 70S BELL MONT REPORT
CONKRECHTS OF RISKS THAT ARE
MORE INVASIVE NOW WITH MORE
INTEROWINGTIVE WHOLE GENOME
APPROAIS BENEFITING ESPECIALLY
SHORT TERM AND TRIBAL COMMUNITY
MEMBERS RATING JOB AND
EDUCATIONAL OPPORTUNITIES
CREATED BY HEALTH RESEARCH
HIGHER THAN BENEFITS FROM
ACTUALLY RESEARCHING THE
CONDITION AND POINTS TO REALLY
HELPINGTOUS CREATE DATA
ECONOMIES MORE LOCAL TO TRIBAL
MEMBERS BUILDING UP RESEARCH
CAPACITY FOR TRIBES TO ACTUALLY
MANAGE THEIR OWN DATA AND CAN
PRIVATE PUBLIC RESEARCH IN
BIOMEDICAL SECTOR BE EQUITABLE
AND NOTICE TALKING TO DRUG
COMPANIES UTILIZING CONSORTIUMS
DATA SETS THEY ASK US HOW MANY
AND OF WHAT CONDITIONS AND WE
HAVE SWITCHED QUESTION BACK TO
COMPANIES AND ASKED THEM WELL
HOW ABOUT THIS FOR A CONCEPT AND
USING INDIGENOUS PEOPLE'S DATA
TO STUDY CONDITIONS THAT EFFECT
INDIGENOUS PEOPLE AND YOU
CONSTITUTE 3% OF POPULATION THAT
WON'T BE PROFIT GENERATIVE THAT
UNDERLIES A HUGE AMOUNT OF
ASSUMPTION DRIVING INNOVATION
AND ESPECIALLY FOR PUBLIC AND
PRIVATE ENDEAVORS AND HOW DO WE
OPERATIONALIZE RESPECT FOR
INDIGENOUS SOVEREIGNTY?
LANGUAGE IN UPDATED COMMON RULE
AND WHAT HAPPENS TO SINGLE IRB
MANDATE ACADEMIC INSTITUTION
PUTS IN POLICY ANOTHER
INSTITUTION INCLUDING TRIBAL
IRBS WHAT HAPPENS TO TRIBES
WITHOUT FEDERALWIDE INSURANCE
POLICY WITH A -- DATA SHARING
AND NOW A PUBLIC HEALTH LAW WHO
OWNS DATA WHEN PARTNERING WITH
FOR PROFIT INDUSTRY SOMETHING
BROUGHT UP IN LAST SESSION AND I
MENTIONED EARLIER AT FIRST PANEL
THAT OPEN DATA BENEFITS
RESEARCHERS MORE EQUITABLY
BENEFITING COMPANIES MORE AND
PUBLIC DATA AND KEEPING DATA
PRIVATE PROTECTING INNOVATION
AND HOW DOES AND WHAT DOES OPEN
DATA AND DATA HARMONIZATION AND
HOW IT PLAYS OUT WHEN
INTERNATIONAL PARTNERS ARE
INVOLVED COULD HAVE INTELLECTUAL
PROPERTIES MEASURES PROTECTING
INNOVATION DOMESTIC LEVEL AND
WHAT HAPPENS WHEN PARTNERING
WITH INTERNATIONAL PARTNER AND
HOW DOES IT GO TO PROTOCOLS THAT
HAVEN'T OPERATIONALIZED THESE
LEGALLY FOR GLOBALIZED
INDIGENOUS PEOPLES AND
COMMUNITIES?
>>WOW. I HEARD A FEW THINGS
THAT SORT OF THERE WAS
CROSS-TALK BETWEEN YOUR COMMENTS
AND RONNIE PICKED UP ON THINGS
FROM EARLIER PANELS ABOUT MORE
EDUCATION OF RESEARCHERS AND
MORE RESEARCH.
YOU KNOW, THAT THIS WAS JUST A
VERY HIGH-LEVEL TOUCH, IF YOU
WILL, OF 160 PEOPLE SO JUST
SCRATCHING THE SURFACE AND YOUR
COMMENT ABOUT HOW PEOPLE ON THE
ONE HAPPENED SAID THEY WERE MOST
SUPPORTIVE OF DATA LINK WAJ WHEN
IT WAS COMPLETELY ANONYMOUS AND
STRONGLY ENDORSED THE IDEA IT
COULD BE USED TO IDENTIFY PEOPLE
WHO COULD BE INVITED TO
PARTICIPATE THAT SEEMS LIKE A
CONTRADICTION AND SEEMS LIKE
EXACTLY THE KIND OF SET OF
QUESTIONS IT THAT WE CAN DIG
INTO WITH FURTHER RESEARCH
UNDERSTANDING WHEN PEOPLE SAY OR
ARE ENDORSING IDEA THAT IT
SHOULD BE FULLY ANONYMIZED WHAT
THEY ACTUALLY MEAN BY THAT AND
THEY MIGHT NOT MEAN WHAT WE
THINK THEY MEAN OR WHAT WE WOULD
MEAN AND YEAH.
AND I THINK THAT THANK YOU,
KRYSTAL, FOR YOUR POINTS.
YOU REALLY -- YOU KNOW, WE HEARD
A LITTLE ABOUT INTELLECTUAL
PROPERTY TODAY AND HEARD A
LITTLE ABOUT OWNERSHIP.
IT SEEMS TO ME IN MY OWN
REFLECTION ON WHAT WE HAVE DONE
AS A WORKING GROUP ONE THING I
THOUGHT OF WE DON'T HAVE
RESPONSIBILITY NOT
RESPONSIBILITY BUT WE HAVE WORD
RESPONSIBILITY AND RESPECT IN
OUR LIST OF SORT OF ETHICAL
DOMAINS AND ETHICAL CONCEPTS.
WE HAVE OTHER WORDS LIKE
CONTROL; RIGHT?
CONTROL DEFINITELY -- BEING ABLE
TO CONTROL WHAT HAPPENS TO YOUR
DATA IN SOME WAYS DOES RELATE TO
PEOPLE FEELING RESPECTED BY US.
BUT, AS I WAS LISTENING TO
KRYSTAL IN PARTICULAR AND OTHERS
ALSO, I WAS THINKING, YOU KNOW,
MAYBE THAT WAS PERHAPS AN
OVERSIGHT TO NOT BE VERY
EXPLICIT IN INCLUDING THAT WORD
RESPECT.
ALL RIGHT. I WANT TO GO ON AND
ASK AND SOME OF THIS HAS ALREADY
BEEN TOUCHED ON.
IF ANYBODY WANTS TO ADD ANYTHING
ABOUT CHALLENGES AND OF ENGAGING
WITH RESEARCH PARTICIPANTS AND
PARTICULARLY AROUND NOTIONS OF
DATA LINKAGE AND DATA SHARING.
>>I MEAN, I CAN START. I THINK
YOU KNOW JUST GOING BACK TO
INITIAL POINTS I MADE. I THINK
THERE IS LOTS OF EDUCATION
NEEDED IN THIS SPACE; RIGHT?
EVEN STARTING WITH SOMETHING AS
FOUNDATIONAL AS TALKING ABOUT
DEFINITIONS; RIGHT?
I MEAN, AS EARLY AS THE FIRST
CONVERSATION WE HAD, WE HAD TO
STOP AND RECOGNIZE THAT WE
NEEDED TO DEFINE DIFFERENCE
BETWEEN ANONYMIZE THE DATA AND
DEIDENTIFIED DATA; SFLIETH.
COMMUNITY MEMBERS WERE GETTING
CONFUSED OR NOT UNDERSTANDING
WHAT THAT MEANT AND ONCE WE
DEFINE THE AND HELPED THEM
UNDERSTAND THE DIFFERENCE,
PEOPLE WERE MUCH MORE
COMFORTABLE WHEN COMPLAINING,
OKAY. WHEN TALKING ABOUT DATA
THAT IS ANONYMIZED; RIGHT?
I'M COMFORTABLE IN THIS SCENARIO
IF DATA IS USED IN THIS WAY AND
IF YOU ARE GIVING ME A SCENARIO
WHERE MY DATA MIGHT BE USED FOR
THIS, THIS, OR THIS AND IT IS
DEIDENTIFIED, WELL, OKAY. I
WILL CONSIDER BENEFITS AND RISKS
MAYBE A LITTLE DIFFERENTLY. WE
WERE ABLE TO HAVE VERY SPECIFIC
CONVERSATIONS AND SEPARATE THEM
OUT. IT IS REALLY IMPORTANT.
>>UH-HUH.
>>I DO THINK WHAT IT SHOWED US
IS THE DEFINITIONS PART THAT IS
REALLY IMPORTANT AND THAT WE
MADE SOME ASSUMPTIONS AND
SKIPPED OVER SOME OF THAT AT
FIRST.
IT IS COMPLICATED. SHAWN, IN
PREPARING FOR THIS PANEL I READ
I DON'T KNOW. 5 OR 6 TIMES AN
EXPLANATION OF TECHNOLOGY THAT
YOU ARE BUILDING AND USING.
IT IS COMPLICATED.
YOU KNOW?
YOU EXPLAINED IT IN A WAY THAT
IS EASIER FOR ME TO UNDERSTAND
IN 5 OR 6 TIMES I READ IT ON THE
WEBSITE. IT IS NOT SIMPLE TO
UNDERSTAND.
I THINK THAT, YOU KNOW, FOR
PEOPLE THAT DON'T THINK ABOUT
THESE THINGS EVERY DAY, YOU
KNOW, WE JUST NEED TO BE
DELIBERATE ABOUT HOW WE ARE
SHARING THIS NFLG THIS /*
INFORMATION AND INTRODUCING
TOPICS THAT ARE COMPLICATED AND
HAVE FOUR HOURS TO EXPLORE THREE
DISCRETE TOPIC AREAS, IT WAS
ABOUT AN HOUR FOR EACH TO SORT
OF GET THE RICH INSIGHTS THAT WE
DID.
SO, YOU KNOW, I WAS -- YOU KNOW,
IN ALL OF THE CONVERSATIONS I
WAS SO IMPRESSED WITH HOW
QUICKLY THEY WERE ABLE TO REALLY
GRASP CONCEPTS AND FOR THIS ONE
ON LINKAGE IN PARTICULAR, IT IS
JUST COMPLICATED.
>>ANOTHER PIECE OF CONTEXT THAT
IS USEFUL FOR THE EXPERIENCE
THAT I MENTIONED IS THAT INDIANA
HAS A COUNTRY THAT IS LONGEST
RUNNING HEALTH INFORMATION ECH
CHANGES WE INTEGRATE HUNDREDS OF
CLINICAL DATA SOURCES TOGETHER
AND WE LINK THEM. THE WAY THAT
GOT STARTED WAS THROUGH A
COALITION OF DIFFERENT
STAKEHOLDERS.
IF YOU WANT TO CREATE AN
ENVIRONMENT WHERE LINKAGE IS AT
LEAST UNDERSTOOD AND VIEWED
POSITIVELY I THINK THERE HAS TO
BE CLEAR VALUE PROPOSITIONS
PROVIDED HEALTH INFORMATION
EXCHANGE STARTED BY PATIENT
SAFETY COALITION, PHYSICIANS,
AND HEALTH CARE ADMINISTRATORS
ALL OF WHOM SAID, KNOW WHAT?
AGGREGATED DATA FOR PURPOSES OF
PATIENT CARE NOT RESEARCH. I
WILL TALK ABOUT RESEARCH IN A
SECOND.
BUT, THE VALUE OF INTEGRATING A
PERSON'S RECORD IN THE EMERGENCY
DEPARTMENT WHERE PHYSICIAN
DOESN'T KNOW YOU FROM ADAM IS
CLEAR TO EVERYBODY. THAT GOT
INFORMATION EXCHANGE STARTED.
THE THIRD USE CASE WAS RESEARCH.
YOU KNOW, ARGUMENT THERE IS WE
WANTED TO IMPROVE LIVES AND
HEALTHCARE OUTCOMES OF HOOZIERS
AND TO DO THAT WE HAVE TO BE
ABLE TO DO RESEARCH.
AGAIN, P MULTIPLE LAYERS OF
MESSAGING NEED TO GO THERE. BY
THE WAY, SECOND USE CASE AND I
SKIPPED A THIRD AND SECOND USE
CASE IS PUBLIC HEALTH REPORTING.
THAT, AGAIN, WAS VALUED VERY
EARLY ON AND WE EXPLAIN TO
EVERYBODY PHYSICIANS AND
LABORATORIES AND HEALTH SYSTEMS
DO A LOUSY JOB OF REPORTING
PUBLIC HEALTH AND HEALTH STUDIES
REPORT LESS THAN 10% OF DISEASES
IN COMMUNITY AND VALUE
PROPOSITIONS ONE AFTER THE OTHER
AND IF YOU WANT TO LINK DATA AND
TO INTEGRATE DATA IT IS
INCUMBENT UPON US TO HAVE GOOD
REASONS FOR DOING SO.
REASONS THAT RESONATE WITH THOSE
WHOSE DATA IS GOING TO BE
[INDISCERNIBLE].
>>YEAH. I WOULD SAY THAT
CONSENT TO LINK NEEDS TO BE
STUDIED.
BECAUSE, AGAIN, INCREASES RISK
OF RE-IDENTIFICATION AND YOU
THINK THAT YOU CONTRIBUTED TO
THIS STUDY. THEY HAVE CERTAIN
DATA. YOU CONTRIBUTED TO THAT
STUDY AND THEY HAVE OTHER DATA
BUT YOU DON'T KNOW THAT THEY ARE
BEING LINKED.
THAT IS -- IT MIGHT BE
PROBLEMATIC AND EFFECTS
ELECTRONIC HEALTH RECORDS THAT
ARE NOT EXPLICITLY CONSENTED FOR
LINKAGE, I CAN SEE A BIG PROBLEM
THERE.
>>YEAH. THAT IS A REALLY GREAT
POINT AND TOTALLY CONNECTS ALSO
WITH RONNIE'S POINT THAT IT IS
ACTUALLY REALLY DIFFICULT TO
EXPLAIN.
NOT JUST THAT WE WILL SHARE YOUR
DATA BUT WE WILL LINK IT. WE
WILL MAKE IT -- THAT MIGHT
CHANGE RISKS AND BENEFITS OF NEW
DATA SET.
BUT, YEAH.
>>I WANT TO ADD A WORD TO YOUR
ETHICAL DOMAIN. THAT IS RE KCR
ROW PROSTY.
>>THANK YOU. I CAN TYPE NOT
SPEAK. I THINK THAT IS
IMPORTANT. IT WAS NOW TWO
SUMMERS AGO THAT NIH ANNOUNCED
TWO LARGE AI DRIVEN ENDEAVORS
WITH AMA HEAD AND
[INDISCERNIBLE] AND ONE THING I
APPRECIATED IS THEY ACTUALLY HAD
AN ETHICAL CORE. IT WAS ALL
FAIR DRIVEN THAT TO ME HAS BEEN
A CRITIQUE I HAD OF FAIR
RESEARCHERS ARE FINDING RULES
AND ACCESS AND ENGAGEMENT TO
BENEFIT THEIR ABILITY TO DERIVE
AND BENEFIT FROM DATA BUT THERE
IS NOTHING ABOUT THAT COMMUNITY
BENEFIT; RIGHT?
WHAT IS OUR SOCIAL
RESPONSIBILITY?
HOW ARE WE ACTUALLY ENSURING WE
ARE DELIVERING THAT BACK TO
COMMUNITY MEMBERS BECAUSE ONE
THING I SMILES HAVE ASKED
SCIENTISTS IN THE PAST IS YOU
KNOW WHEN YOU ARE ENTERING
COMMUNITIES WHAT ARE YOU DOING
TO ACTUALLY ENSURE THAT YOUR
RESEARCH ACTUALLY IMPACTS PEOPLE
YOU ARE INTERACING WITH?
>>WE PUBLISH AND ADVANCE
SCIENCE A LITTLE BIT AND UP TO
SOMEBODY ELSE TO PICK UP THE BAT
ON AND DELIVER THE INNOVATION
TRANSLATED BACK AND KICK THE CAN
DOWN THE ROAD TYPE OF THING AND
MEANWHILE WE ARE DISSEMINATING
TRUST IN THE SYSTEM AND
COMMUNITIES ARE SEEING OTHER
ENTITIES ARE BENEFITING FIRST
BEFORE IT IS ACTUALLY GETTING
BACK TO THEIR COMMUNITIES
ESPECIALLY WHEN IN SUCH HEALTH
DISPARATE SITUATIONS AND THEY
CAN'T REALLY AFFORD TO CONTINUE
TO WAIT FOR INNOVATIONS AND I
THINK THAT BY AND LARGE PEOPLE
DON'T HAVE ISSUES WITH DATA
LANGUAGE WHEN IT HAS A BENEFIT
LOCAL TO THEM THAT IS PERCEIVED
TO BE LOCAL TO THEM AND ARE
VALUE DRIVEN DECISIONS THAT
DIFFER BY COMMUNITY AND HAVE TO
GET COMMUNITY'S INPUT TO
UNDERSTAND WHAT IT IS THAT WILL
BE A BENEFIT TO THEM.
ONE THING I'M STRUGGLING WITH
NOW IS ACTUALLY HUMAN REFERENCE
GENOMES AND PANGENOME AND ARE
PROJECTS THAT ARE EXPANDING
INCLUSION OF DIVERSE PEOPLES AND
GENOMIC DATA AND STUDIES TO
IMPACT RESEARCH AND HEALTH AND
BIOMEDICAL RESEARCH AND
INCLUDING DELIVERY OF GENETIC
TESTS WITH HIGHER CLINICAL
UTILITY AND UNDERSERVED IN
POPULATIONS AND QUESTION I HAVE
IS WILL IT ACTUALLY BENEFIT
TRIBES AND RESEARCH HAS BEEN
UNDERTAKEN BY PAST DIVERSITY
PROJECTS THAT HAVE BEEN HEAVILY
QUESTIONS ABOUT I TRIBES. THEY
ARE DOG RESEQUENCING 2.0 OR 3.0
IN DIFFERENT DATA SETS AND HOW
IS IT ACTUALLY GOING TO BENEFIT
TRIBES THAT DON'T HAVE ABILITY
TO AFFORD TASKS THAT DON'T HAVE
GENETIC COUNSELORS OR PROVIDERS
TO CLIFR CULTURAL COMPETENT CARE
TO DELIVER AND INTERPRET TESTS
FOR THEM AND HOW ARE WE ACTUALLY
CONCEPTUALIZING THIS IN
FRAMEWORK OF INNOVATION ASKING
FOR ACCESS TO DATA AND
HARMONIZING DATA ACROSS OTHER
STREAMS WHEN WE CAN GET IT
PRIMARILY FROM COMMUNITY MEMBERS
THEMSELVES WE HAD DETERIORATED
TRUST SYSTEMS AND HOW DO WE
ACTUALLY MOVE IT FORWARD I DON'T
KNOW.
>>THAT IS SO INTERESTING.
I WAS REALLY STRUCK WHEN YOU
SAID THAT IN YOUR STUDY
COMMUNITY MEMBERS YOU WERE
INTERVIEWING VIEWED CREATION OF
BASICALLY OF JOBS AND CAPACITY
BUILDING AS MORE IMPORTANT
POTENTIALLY EVEN THEN YOU KNOW
SORT OF SOME SHORT-TERM MEDICAL
BENEFIT AND WHEN YOU SAID THAT,
I THOUGHT, I WONDER IF THAT IS
BECAUSE PEOPLE HAVE SO LITTLE
FANL OR TRUST IN THE HEALTH CARE
SYSTEM THAT MIGHT DELIVER ANY,
YOU KNOW, PRECISION MEDICINE OR
MEDICAL BENEFIT THAT THIS IS
WHAT THEY VIEW AS REALISTIC OR
IF -- THE FLIPSIDE OF THAT IS
THAT I FELT LIKE IT WAS
ENCOURAGING TO ME IN THE SENSE
THAT THE REASON THAT WE DO
RESEARCH IS TO ADVANCE KNOWLEDGE
THAT IS THE -- THE SINGULAR
THING THAT RESEARCH CAN DO THAT
OTHER ACTIVITIES LIKE HEALTH
CARE DON'T NECESSARILY DO OR
DON'T DO AS WELL.
AND SO, YOU KNOW, HISTORICALLY
WE HAVE THOUGHT THAT IS THE
BENEFIT THAT SOCIETY GETS FROM
RESEARCH AND IS WHAT PEOPLE
OUGHT TO BE CONTRIBUTING TO AND
SORT OF INDIVIDUAL IMMEDIATE SAY
MEDICAL BENEFIT FROM SAY
RESEARCH PARTICIPATION IS GREAT
WHEN WE CAN DO IT. IT SHOULDN'T
BE OR CAN'T BE THE GOAL OF
PARTICIPATING IN RESEARCH;
RIGHT?
AT SAME TIME GIVEN THERE IS THIS
REALLY SIGNIFICANT DISPARITY IN
TERMS OF WHO ACTUALLY GETS LIKE
THE MEDICAL BENEFIT WHEN THE
KNOWLEDGE ADVANCES AND BECOMES
TRANSLATED INTO HEALTHCARE AND
WE HAVE A VERY UNEQUAL HEALTH
CARE SYSTEM AND OKAY IF I'M ONE
OF THE PEOPLE WHO IS RECEIVING
LESS HEALTH CARE AND POORER
HEALTH CARE WHY SHOULD I WANT TO
PARTICIPATE IN RESEARCH AND THAT
SORT OF OVERALL SOCIAL GOAL
DOESN'T SEEM TO APPLY TO ME AND
ONE REASON COULD BE THAT YOU ARE
ACTUALLY CAPACITY BUILDING;
RIGHT?
TO ME, IN FACT, THAT SHOULD BE A
REASON THAT MAYBE IS IN ALL
COMMUNITIES; RIGHT?
AND SOMETHING WE CAN LEARN.
YES?
>>I WANTED TO CLARIFY THAT IT
MIGHT BE I HAVE A CONFLICT AND
BRIDGE 2AI ETHICS CORE IS ABOUT
CAPITAL LETTER FAIR IN LOWERCASE
FAIR TOO. IT IS ETHICAL AND IT
IS AI. I THINK THERE IS
ATTENTION TO THAT.
WHAT IS INTERESTING IS IT IS
FULLY CONSENTED AND PREPARING
DATA TO BE OF USE TO A LARGE
SPECTRUM OF AI APPLICATIONS AND
PROGRAMS CAN BE BETTER AND SO
ON. IT IS AN ATTEMPT TO DO THE
RIGHT THING IN MY OPINION.
>>FOR ANYBODY WHO DOESN'T KNOW.
WE HAVE ACRONYMS BEING THROWN
AROUND HERE. UPPERCASE FAIR
FAIR IS AN ACRONYM THAT IS BEING
APPLIED TO DATA IT THAT GOES
INTO SHARING REPOSITORIES TO
MAKE SURE THAT YOU DO GET VALUE
OUT OF THOSE DATA THAT OTHER
RESEARCHERS CAN USE DATA WHEN
GOING INTO SHARING REPOSITORY
THAT IS CAPITAL LETTER FAIR AND
WHEN KRYSTAL SAID THAT IS
DIFFERENT THAN FAIRNESS AND
LOWERCASE FAIRNESS; RIGHT? OR
JUSTICE OR SOMETHING LIKE THAT
UPPERCASE FAIR IS METADATA
STANDARDIZED FILES AND THINGS
LIKE THAT.
WE HAVE HEARD IDEAS ABOUT HOW WE
MIGHT ALTER PRACTICES OR WHAT
ARE GOOD PRACTICES IN RELATION
TO DATA LINKAGES AND IF
EXPANDING ON IDEAS AND FOCUSING
ON WHAT WE SHOULD BE DOING
BETTER OR DIFFERENTLY.
>>I HAVE -- I THINK WE NEED TO
CONTINUE TO ADVANCE THE STATE OF
THE ART AND I WILL PUT IN QUOTES
NOW, PRIVACY PRESERVING RECORD
LINKAGE.
>>THANK YOU.
>>TO YOUR POINT PULLING DATA
TOGETHER.
I TREAT THOSE DIFFERENT AND I
CAN DO DUPLICATOR AND MIGHT WANT
TO KNOW HOW MUCH OVERLAP BETWEEN
TWO POPULATIONS THERE ARE AND NO
INCREASED RISK OF
RE-IDENTIFICATION THERE.
THERE IS USES OF RECORD LINKAGE
AND WILL DEPEND ON USE OF RECORD
LINKAGE AND HOW YOU USE IT
DETERMINING WHAT RISK ACTUALLY
IS AND I THINK THAT WE HAVE TO
CONTINUE TO THINK ABOUT PRIVACY
PRESERVING METHOD AND LUCILA IS
DOING GREAT WORK IN IN A SPACE
AND ON MITIGATING SIDE LOOKING
AT WHAT PAYLOAD DATA IS AND ONCE
I HAVE LINKED PATIENTS TOGETHER
WE THROW AWAY IDENTIFIERS AND
YOU DON'T NEED THEM YOU ARE DONE
LINKING AND YOU HAVE LEFT OVER
PAY-LLOYD DATA PEOPLE TRY TO DO
RE-IDENTIFICATION AND LOTS OF
METHODS ARE OUT THERE THAT ARE
IN THEIR INFANCY IN TERMS OF
SPLIT AND FETTERATED LEARNING
AND THINK THAT NIH SHOULD BE
ADVOCATING FOR MORE OF THIS TYPE
OF WORK THAT, AGAIN, IT DOES
MITIGATE RISK AND HELPS PEOPLE
TO FEEL MORE CONFIDENT IN ACCESS
AND CONTROL OF DATA AND THAT IS
ONE AREA.
ANOTHER AREA WE NEED TO HAVE
MORE ETHICAL CONVERSATION AND
METHOD FOR MATCHING THAT IS
REFERENTIAL MATCHING IS SHOWN TO
BE WE STUDIED A FAIR AMOUNT AND
IS MUCH MORE ACCURATE AND DRAM
CATICALLY INCREASING ACCURACY OF
PREVIOUSLY TRADITIONAL MODELS
AROUND REFERENTIAL MATCHING IS
WHERE CREDIT BUREAUS AND BOARD
OF MOTOR VEHICLES AND ALL THESE
PUBLICLY AVAILABLE DATA SETS ON
INDIVIDUAL'S DEMOGRAPHICS ARE
BROUGHT TOGETHER USED TO AUGMENT
TO ENHANCE MATCHING PROCESSES
A
AND.
USE OF DATA IS LARGELY NOT
UNDERSTAND AND RECOGNIZED AND
METHOD WORKS WELL AND IS DRAM AT
KALILY ACCURATE THAN TRADITIONAL
METHODS OF MA MATCHING AND
CONVERSATIONS ABOUT TRADE OFF
AND REASON BEING USED AND
EXPOSURE AND LOSS OF CONTROL
WITH SOME METHODS AND WILL BE
IMPORTANT TO THINK ABOUT
TECHNIQUES AND AREAS AND ONE
MORE AND I WILL STOP. BIAS WE
HAVEN'T TALKED ABOUT BIAS AND
RECORD LINKAGE AND SURPRISINGLY
ARE FEW STUDIES LOOKING AT
SUBGROUP MATCHING AND PATIENT
MATCHING AND WE HAVE BEGUN
STUDYING THAT OVER LAST YEAR AND
SURPRISE THERE ARE DIFFERENCES
IN MATCH ACCURACY AMONG
SUBGROUPS BASED ON AVENLG RANGE
MEASURE ETHNICITY AND IDENTITY
CHARACTERISTICS AND
UNDERSTANDING THAT PEOPLE USE
ARTIFICIAL INTELLIGENCE IN
PATIENT MATCHING AND COMMENTS IN
LAST PANEL APPLY TO
METHODOLOGICAL APPROACHES WE ARE
USING BIAS DATA IN INCREASES
BIASED DATA OUT AND WE HAVE TO
THINK ALONG THOSE LINES AS WELL.
>>RAISING TWO WORDS OR
CONCEPTS: BENEFIT AND
RESPONSIB
RESPONSIBILITY.
I THINK ALL DAY LONG WE TALKED
ON PANELS BENEFIT CAME UP AND IN
CONTEXT OF RETURNING BENEFIT TO
COMMUNITIES THAT IS IMPORTANT IN
TERMS OF CONTINUING TO BUILD
TRUST AND DEEPEN TRUST WITH
COMMUNITIES.
I WOULD ARGUE AN IMPORTANT THING
TO BRING INTO THE CONVERSATION
IS BENEFIT TO INDIVIDUALS WHO
ARE DEVELOPING TECHNOLOGY;
RIGHT?
MORE PEOPLE AND WE HAVE HEARD
IT.
IT IS A CONSTANT THEME
THROUGHOUT THE DAY AND WAY TO
GET TO BIAS THAT EXISTS IN
TECHNOLOGY IS GETTING MORE
PEOPLE TO CONSENT AND BE
COMFORTABLE WITH PARTICIPATING
TO SHARE DATA; RIGHT?
TO BUILD OUT DIVERSITY AND
PARTICIPATION AND EXPAND
PARTICIPATION WITHIN THE
SYSTEMS; RIGHT?
TECHNOLOGY WILL BE BETTER. IT
WOULD BE MORE ACCURATE; RIGHT
SF.
THERE IS A BENEFIT FROM AN
INDUSTRY PERSPECTIVE; RIGHT?
IF YOU THINK ABOUT, YOU KNOW,
FROM A RECRUITMENT PERSPECTIVE
FOR FILLING TRIALS AND OUR
RECORD IS NOT SO GREAT; RIGHT?
IF WE CAN, YOU KNOW, SHARE THE
RESPONSIBILITY ACROSS THE
STAKEHOLDERS FOR DOING THE
EDUCATION AND DOG THE COMMUNITY
ENGAGEMENT AND SOME BENEFIT NOT
ONLY GOES BACK TO COMMUNITY BUT
INDUSTRY AND TECHNOLOGY
COMPANIES AND PHARMACEUTICAL
COMPANIES AND TECHNOLOGIES THAT
ARE MORE ACCURATE AND THERE IS
GREATER PARTICIPATION. THERE IS
A SHARED BENEFIT. THERE IS A
SHARED RESPONSIBILITY AND SHARED
BENEFIT. I THINK THAT IS AN
IMPORTANT POINT I HADN'T HEARD
MADE IN THE EARLIER PANELS.
>>SO, I HAVE WRITTEN A COUPLE
PAPERS ON THIS AND IT IS A
COMMENT ON FEDERAL OR FEDERATED
LEARNING AND BLOCK CHAINING
METHODS AND APPROACHES FOR
PERHAPS PROVIDING COMMUNITIES
MORE INPUT IN OPERATIONALIZING
WHO GETS ACCESS TO DATA AND
UNDER WHAT TERMS, ET CETERA.
IT IS REALLY IMPORTANT TO
UNDERSTAND THOUGH THAT THE
LEVERS ON ALL OF THE DECISION
MAKING PATHWAYS IS IF IT IS IN A
NONCOMMUNAL OR NONCOMMUNITY
OWNED PLATFORM TO BEGIN WITH
LEVERS ARE OFTEN TIMES PUSHED BY
SOMEBODY OUTSIDE OF THE
STAKEHOLDERS AND MAY NOT
UNDERSTAND A LOT OF THE CULTURAL
DYNAMICS AND SOME OF THE
COMPLEXITIES AND LEGAL ISSUES.
SO, IT IS REALLY IMPORTANT I
WILL GO BACK AND DOUBLE DOWN ON
MY -- ON IMPORTANCE OF ACTUALLY
THINKING ABOUT DATA CAPACITY AND
BUILDING DATA INFRASTRUCTURES
THAT ARE COMMUNITY-BASED AND
THINKING ABOUT BUILDING SERVERS
IT THAT ARE COMMUNITY-BASED.
I'M THINKING LOTS OF TIMES THIS
IS IN TERMS OF INDIGENOUS
COMMUNITIES HAVING ABILITY TO
CREATE FRAMEWORKS FOR THEMSELVES
IS SOMETHING THAT I HAVE SEEN A
BIT IN PATIENT ADVOCACY GROUPS
AS WELL AS RARE VARIANT GROUPS
AS WELL. SO, I WANTED TO REALLY
CAUTION WHEN WE ARE TALKING
ABOUT FL AND BLOCKCHAINING THAT
WE ARE ALSO THINKING ABOUT
ENSURING THAT LEVERS ARE AND
DECISION MAKING AUTHORITIES ARE
FROM THESE OTHER UNDERSERVED AND
HISTORICALLY DISENFRANCHISE THE
PEOPLES.
AND, YOU KNOW, I ALSO WANT TO
RAISE THE POINT ABOUT WE ARE
TALKING ABOUT DATA LINKAGES AND
HARMONIZATION ACROSS DIFFERENT
DATA STREAMS AND I JUST WANTED
TO LIKE BRING IN ANOTHER POINT
THAT MY BACKGROUND IS IN
POPULATION GENETICS AND GENETIC
EPIDEMIOLOGY.
ESPECIALLY IN THESE AREAS WHERE
THE -- THE FIELD AND RESEARCH
HAS ADVANCED BY WHAT IS ACROSS
THE GENOME AND IN TERMS WHAT YOU
CAN SEQUENCE AND WHAT IS IN HAD.
R RECORD ALONE AND ONE OF MY
HUGE BITS OF EXPERIENCE IS THERE
IS A KNOWLEDGE GAP RELATED TO
SOCIAL STRUCTURES OF
DETERMINANCE OF HEALTH THAT WE
ARE MISSING THAT AND SOMETIMES
WE ARE MISSING THIS WILL M TO
THE POINT WE ARE SO FOCUSED ON
DATA WE ALREADY HAVE THAT WE ARE
NOT ALSO ASKING HOW FLAWED THAT
DATA IS TO BEGIN WITH ESPECIALLY
FOR QUESTIONS WE SHOULD BE
ASKING AND ALSO, YOU KNOW,
THINKING ABOUT IN TERMS OF
TRAINING RESEARCHERS AND ARE
THEY ACTUALLY NOT ONLY PROVIDED
SKILLSETS AND FUNDING TO BE ABLE
TO DO COMMUNITY ENGAGED
APPROACHES BUT ABLE TO DO MORE
QUALITATIVE AND ENL KNOW GRAPHIC
RESEARCH TO GET QUALITY SURVEY
DATA THAT IS COMPETENT AND
RELEVANT FROM UNDERSERVED
COMMUNITIES AND SOMETHING TO
THINK MORE AND MORE IN TERMS OF
BIOINFORMATICS AND ALSO JUST TO
THESE SORT OF DATA SENSE
APPROACHES AND, YOU KNOW, THESE
ARE THINGS YOU CAN'T GET FROM
THE ELECTRONIC HEALTH RECORD.
WE -- IN ORDER TO GET THAT AT A
-- AT A WAY THAT IS GOING TO BE
MEANINGFUL, IT IS GOING TO
REQUIRE A LOT OF COMMUNITY
ENGAGEMENT.
THIS IS SOMETHING THAT WE NEED
TO PUT MORE EFFORT TOWARDS
FUNDING.
>>YEAH. I WOULD AGREE. I
WOULD ALSO SAY SOMETIMES WE MAKE
WRONG ASSUMPTIONS AND BELIEVE WE
DID IT IN THE PAST THAT PERSONAL
PREFERENCES ARE ACQUAINTED WITH
ROYALTY AND IN SOME GROUPS IT IS
NOT; RIGHT?
IT IS THE GROUP PERSPECTIVE THAT
MATTERS AND SOMETIMES YOU MIGHT
DO MORE HARM THAN GOOD TO
ALLOWING THE INDIVIDUAL
PREFERENCES TO TAKE UP. AND THE
SECOND ASPECT OF THIS IS BECAUSE
BEFORE ALL OF THE WORK ON
SHOWING BENEFITS TO EVERYONE, IF
YOU DO ALLOW PREVENSS, YOU MIGHT
BE EXACERBATING THE
UNDERREPRESENTATION OF CERTAIN
GROUPS.
SO, THERE IS ALWAYS -- YOU KNOW,
YOU THINK YOU ARE DOING THE
RIGHT THING BUT MAYBE NOT IN --
I THINK PERSONALLY THAT SOCIAL
DETERMINANTS OF HEALTH AND
PROXIES BEING USED PARTICULARLY
INCLUSION OF SELF-REPORTED RACE
OR PERCEIVED RACE INTO
ALGORITHMS IS BECAUSE WE LACK
IMPORTANT INFORMATION. WE ARE
MAKING GENERALIZATIONS THAT ARE
JUST VERY DAMAGING.
>>SO, LET ME JUST ASK YOU GUYS.
I'M NOT SURE IF YOU WOULD CALL
IT DATA LINKAGE, BUT CERTAINLY
USING, YOU KNOW, GEOCODING WHERE
A PERSON LIVES AND WORKS AND
SPENDS THEIR TIME.
THEN LINKING TO -- I MEAN, I
KNOW THERE ARE ENVIRONMENTAL
DATASETS OUT THERE THAT ARE
PRETTY GRANULAR WITHIN A FEW
BLOCKS OF A CITY; RIGHT?
I DON'T KNOW IF WE CALL THAT
DATA LINKING THAT IS ONE WAY TO
BRING IN SOCIAL DETERMINANTS OF
HEALTH THAT HISTORICALLY HAVE
NOT BEEN IN LOTS OF BIOMEDICAL
DATA SETS.
IS THAT -- AM I RIGHT TO THINK
ABOUT THAT AS A KIND OF DATA
LINKAGE?
>>I CERTAINLY DO. YOU CAN LINK
OTHER DATA NONPATIENT CENTERED
DATA BY SPACE OR TIME OR BOTH.
WE DO LOTS OF THAT AND
INCORPORATE AND AUTOMATICALLY
GEOCODE PATIENT DATA IN HEALTH
INFORMATION EXCHANGE EXPLICITLY
SO THAT WE CAN INCORPORATE OTHER
DETERMINANTS TO THAT PARTICULAR
PERSON LEVEL. YEAH. SO, I DO
CONSIDER IT LINKING.
>>I DO THINK THAT IT IS
PROBLEMATIC.
>>UH-HUH.
>>YOU CAN HAVE NEIGHBORHOODS
WHERE THEY ARE VERY WEALTHY AND
HELP LIVES THERE TOO. YOU ARE
THEN ASSUMING COMPLETE
DIFFERENCE OR KIND OF THING AND
I THINK, AGAIN, THIS
GENERALIZATIONS ACCORDING TO
THIS ARTIFICIAL LINKAGES IS
PERHAPS WHAT IS GOING TO BE
SOMETHING THAT AS WE GO
PERSONALIZE WE COULD GET RID OF.
>>UH-HUH.
>>YOU KNOW?
>>SO, I FEEL STRONGLY THAT MORE
PERSONALIZED WE WANT TO BE LAST
WE WANT TO USE THIS, YOU KNOW,
OVERALL.
>>NEIGHBORHOOD?
>>YEAH.
>>THAT MEASURES.
>>HOPEFULLY WE WON'T NEED THEM.
>>UH-HUH. INTERESTING.
>>ACTUALLY, THIS CONVERSATION
IS LEADING INTO SOMETHING I HAVE
BEEN THINKING ABOUT THROUGHOUT
THE DAY. I WAS RELUCTANT TO
RAISE IT.
BEFORE I DO, I SHOULD REMIND
PEOPLE WE SWISHED TO THIS SLIDE
THAT PEOPLE ONLINE CAN ASK
QUESTIONS AND DON'T KNOW WE HAVE
GOTTEN ANY IN SO FAR AND DON'T
THINK WE HAVE BEFORE I SAY
ANYTHING ELSE, REMINDING YOU IF
YOU HAVE QUESTIONS E-MAIL THEM
IN. WHAT WAS I GOING TO SAY?
MY POTENTIALLY CONTROVERSIAL
QUESTION WE TALKED ABOUT LOTS
WHERE SITUATIONS WHERE
COMMUNITIES SHOULD BE ENGAGED
EARLIER AND MORE FREQUENTLY AND
MORE ROBUSTLY TO CONTRIBUTE TO
DEVELOPING HOPEFULLY BETTER
SCIENCE.
WHAT I WANT TO ASK THE PANEL
ARE: HOW DO WE UNDERSTAND
SITUATIONS?
LIKE HOW DO WE UNDERSTAND THE
ETHICAL DIMENSIONS OF INCLUDING
COMMUNITIES, DESIRES, GOALS AND
PREFERENCES?
I CAN IMAGINE SITUATIONS WHERE
ACTUALLY THERE IS AT LEAST SOME
SUBSET OF A COMMUNITY THAT HAS
STRONG PREFERENCES, GOALS OR
DESIRES THAT FOR OTHER ETHICAL
REASONS WE WOULD THINK NO THE TO
GUIDE OUR RESEARCH.
WE TALKED A LOT ABOUT HOW TO DO
MORE OF THAT.
I'M WONDERING IF THERE ARE
SITUATIONS THAT, THAT IS A SORT
OF GENERAL QUESTION TO THINK
ABOUT IT WITH RESPECT TO DATA
LINKAGE THAT IS THE TOPIC OF OUR
PANEL.
>>[LAUGHING].
>>ARE YOU ASKING ARE THERE
INSTANCES WE SHOULDN'T THINK
ABOUT THE PREVENSS OR INTERESTS
OF THE GROUP?
>>I'M NOT SAYING WE SHOULDN'T
GATHER THOSE PREFERENCES, GOALS
OR INTERESTS.
BUT, HOW -- WHAT ROLE THEY
SHOULD PLAY IN SHAPING RESEARCH
AND OFTEN WE HEARD REPEATEDLY
GENERALLY THEY SHOULD PLAY AN
IMPORTANT ROLE AND ARE THERE
TIMES THAT WE SHOULDN'T AND FOR
ETHICAL REASONS THERE IS
SOMETHING PROBLEMATIC THERE.
>>WE ANSWERED THIS QUESTION
WHEN WE HAVE CAPABILITY TO GO TO
INDIVIDUAL I THINK INDIVIDUAL
PREFERENCES SHOULD BE USED NOT
NECESSARILY LARGER CORPORATE
APPROACH AND DATA IN DETAILS,
BETTER IT WILL BE FOR
INDIVIDUALS IS PART OF THE
ANSWER.
>>WANT TO RESPOND TO THAT?
>>[LAUGHING].
>>YEAH. I THINK
GENERALIZATIONS CAN DO HARM. WE
HAD TO DO IT IN THE PAST. WE
DIDN'T HAVE BETTER WAYS TO
COLLECT MORE GRANULAR DATA AND
SERVED MAJORITY; RIGHT?
NOW THAT WE TRIED TO BE MORE
PERSONALIZED WE CAN DO
COLLECTIONS AND SHOULD TRY TO,
TO THE EXTENT POSSIBLE TO DO
THEM INSTEAD OF INFERRING THINGS
AND CAN SAY FOR AN EXAMPLE THAT
I USED WHEN THE WORLD CUP WAS
GOING ON. I SAID NOT ALL
BRAZILIANS LOVE SOCCER. IT IS
THE MAJORITY AND IT IS THE VAST
MAJORITY AND SO ON.
IF TRYING TO BE PERSONALIZED OR,
YOU KNOW, YOU THINK ABOUT THE
ETHNICITY THAT IT GETS INCLUDED
IN ALGORITHMS TO INFER DIET.
NOW THEY ARE VEGETARIANS IN THIS
PARTICULAR GROUP TOO.
SO, I THINK THAT WHAT WE ARE
DOING NOW, YOU KNOW, TAKING A --
10 YEARS FROM NOW AND PEOPLE
SAY, WELL, THEY ARE REALLY
PRIMITIVE.
>>YEAH.
>>THEY DIDN'T KNOW HOW TO
GATHER MORE SPECIFIC
INFORMATION.
>>YEAH.
>>I THINK THAT, YOU KNOW, SOME
PEOPLE WANT -- I MEAN, WE HEARD
IT IN CONVERSATIONS WHEN WE WERE
LEAVING, THEY WERE, YOU KNOW,
SUPER EXCITED ABOUT WHAT THEY
LEARNED.
THEY WERE REALLY EXCITED ABOUT
THE OPPORTUNITY THAT THE
EMERGING TECHNOLOGY AFFORDS FOR
LEARNING MORE ABOUT THEIR OWN
HEALTH OR IMPROVING HEALTH OF
THEIR OWN COMMUNITY AND SAID,
YOU KNOW, WHAT ELSE CAN I DO?
WHEN WILL YOU CONTACT ME NEXT?
WHEN IS NEXT OPPORTUNITY?
THEY WANTED REMAIN ENGAGED AND
OTHERS WERE LIKE, THIS IS REALLY
INTERESTING. THANK YOU.
YOU KNOW?
SO, YOU KNOW, THERE ARE SOME
PEOPLE THAT WOULD FOR SURE RAISE
THEIR HAND.
THEY WOULD WANT TO HELP SHAPE
THE DIRECTION OF THE RESEARCH OR
RESEARCH PRIORITIES.
SOME PEOPLE MIGHT WANT TO KNOW
OR GET SOMETHING BACK IN TERMS
OF WHAT DID YOU LEARN?
RIGHT?
WHAT DID YOU LEARN ABOUT MY
COMMUNITY OR LEARN ABOUT ME
THAT, YOU KNOW, MIGHT BE USEFUL
TO ME.
OR WHAT DID YOU LEARN TO HELP
ADVANCE SCIENCE IN THIS AREA
SORT OF GENERALLY; RIGHT?
PEOPLE WANT TO UNDERSTAND WHAT
ARE THE OPPORTUNITIES AND HAVE
ABILITY AND HEARD THIS WORD
AGENCY A LOT.
RIGHT?
ABILITY TO DETERMINE FOR
THEMSELVES, YOU KNOW, WHAT IS
THE LEVEL OF ENGAGEMENT THAT
THEY WANT TO HAVE.
WHAT ARE THE DIFFERENT
OPPORTUNITIES?
>>WE HAVE A LONG LINE. WE WILL
LET YOU ANSWER THIS QUESTION.
>>A COUPLE POINTS I WANT TO
MAKE. ONE, WHETHER OR NOT
PRECISION IS A MISNOMER
PERSONALIZED MEDICINE AND OF
COURSE CLINICIANS WERE LIKE WE
DELIVER.
>>CAN YOU BRING THE MIC CLOSER
TO YOU.
>>AS LONG AS WE ARE DEFINING AT
RISK CATEGORIES ALONG RACE
ETHNICITY DIMENSIONS IT IS MORE
STRATIFIED INFORMATION OR EVEN
RACIAL MEDICINE THAT IS FLAWED.
IT IS OF HOW THE DIMENSIONS ARE
OFTEN CALCULATED FROM
EIGENVALUES FROM POORLY MATCHED
REFERENCE GROUPS WITH SKEWED
WITH 5 INDIVIDUALS IN IT AND
PEOPLE DON'T UNDERSTAND
STATISTICS BEHIND BUT IT IS USED
AND MISUSED QUITE HEAVILY. IN
TERMS OF YOUR QUESTION ARE THERE
SCENARIOS IN WHICH SOME OF THE
DECISIONS ARE PERHAPS MADE ON
BEHALF OF COMMUNITY THAT MIGHT
NOT MATCH COMMUNITY VALUES AND
IS A QUESTION POSED QUITE A BIT
FOR TRIBAL MEMBERS.
IT IS A QUESTION THAT IS OF
INDIVIDUAL VERSUS COMMUNITY
CONSENT.
IT IS ALWAYS PHRASED AS A
VERSUS.
I DON'T THINK WE AS SCIENTISTS
CAN GRAPPLE WITH A NONBINARY.
YOU KNOW, THERE IS AN EXCELLENT
PAPER THAT IS BY -- OH, GOSH.
NORTHWEST FARMICO GENOMICS
RESEARCH NETWORK AND SEE ALASKA
UNIVERSITY OF ALASKA FAIRBANKS
AND BY [INDISCERNIBLE] AND YES.
SHE ACTUALLY INTERVIEWED TRIBAL
LEADERS AND ONE OF THE ELDERS
STATED IT IS NOT VERSUS BUT AND.
YOU NEED BOTH LEVELS OF CONSENT
IN ORDER TO WORK WITH TRIBAL
MEMBERS.
AND WHAT CAN HAPPEN IF YOU TRY
TO DRIVE VERSES ISSUES IS YOU
END UP UNDERMINING TRIBAL DATA
SOVEREIGNTY AND INSTANCE IN
WHICH A TRIBE THAT WAS A GROUP
THAT WANTED TO RECRUIT TRIBAL
MEMBERS AND THEY BROKERED A DEAL
AND VACCINE COMPANY BEFORE THEY
ACTUALLY OFFICIALLY GOT APPROVAL
FROM THE TRIBE AND TRIBE
DECLINED TO PARTICIPATE AND THIS
IS IN ACTUALLY AN AP ARTICLE
WHERE ONE RESEARCHER QUOTED WE
RESPECT TRIBAL DATA SOVEREIGNTY
AND PUT THEM OUTSIDE OF THE
TRIBAL BORDER AND THIS IS A
SITUATION WHERE SOMETIMES THESE
ARE NOT UP TO RESEARCHERS TO
DECIDE AND SOMETIMES NO RESEARCH
NULL ENGAGEMENT MODEL AND NULL
RESEARCH MODEL IS A BETTER MODEL
IF IT WILL MITIGATE HARMS AND
WHEN YOU THINK ABOUT THAT DO NO
HARM OR REDUCE HARM AND STATING
TO THAT WE HAVE TO THINK ABOUT
IT MORE CAREFULLY THINKING ABOUT
CONDUCTING RESEARCH WE WANT TO
CONDUCT.
>>THANK YOU. SEVERAL
QUESTIONERS ARE IN THE ROOM.
STEP RIGHT UP.
>>OKAY. GOOD AFTERNOON
EVERYONE COLBY BROWN DIRECTOR AT
PYXIS PARTNERS WILL TRY TO BE
SUCCINCT AND THANK YOU FOR
INFORMATION ON THIS PANEL. I'M
THINKING BACK TO THE WORK WE DID
IN COMMUNITY CONVERSATIONS
SPECIFICALLY AROUND TOPIC 3 AND
DATA LINKAGE AND AGGREGATION.
SO, JUST ONE QUICK QUESTION FOR
ANYONE IN THE ROOM.
IS THERE AN ANSWER OUT THERE TO
HOW MANY DATA BASES AND HOW MANY
-- A GENERAL NUMBER OF WHAT IS
HAPPENING IN THAT SPACE?
BECAUSE IN THE CONVERSATIONS
THAT I WAS PRIVY TO LISTENING
TO, THAT IS AN ANSWER THAT THE
PUBLIC WANTS.
WE OBVIOUSLY HAD A SENSE THAT IS
A LARGE NUMBER WE COULDN'T GIVE
THEM. AFTER LISTENING TO ALL OF
YOU TODAY ON PANEL 2 AND 3, AND
MY COMMUNITY ENGAGEMENT SPACE,
I'M COMPLETELY FREAKED OUT.
I THINK THAT ESPECIALLY AS WE
THINK ABOUT MARGINALIZED
COMMUNITIES LOTS OF ANSWERS
GIVEN TODAY THAT WHILE THEY ARE
CERTAINLY TRUE AND IN MY
EXPERIENCE TALKING WITH LOTS OF
DIFFERENT PEOPLE THAT ANSWER
WOULD THEN BE NO IN TERMS OF AND
NO MIGHT BE OKAY FOR CERTAIN
PEOPLE, OF COURSE.
IF TRYING TO BRIDGE DISPARITIES
AND WE CAN'T DR. LYMAN SAID
SOMETHING ABOUT HAVING A
DATABASE OF, MY GOODNESS.
STATISTICAL TOOLS AND WOULD
THINK THAT YOU WOULD WANT TO DO
THE SAME THING WITH DATABASES AT
A MINIMUM THAT IS INFORMATION
THAT COMMUNITIES AND INDIVIDUALS
SHOULD HAVE. IT DOESN'T FEEL
CLEAR. JUST TO ANSWER THAT.
>>I THINK ANSWER TO YOUR
QUESTION IS THE NUMBER OF
DATABASES OUT THERE IS N.
TOMORROW IT WILL BE N2 AND AFTER
THAT WILL BE -- RIGHT?
IT IS GROWING.
>>RIGHT.
>>TOED IS THE SMALLEST NUMBER
OF DATABASES WE WILL EVER SEE IN
OUR LIFETIME.
>>OKAY.
>>IT WILL GROW FROM HERE.
SO, I DON'T THINK THERE IS A
GOOD ANSWER.
WE DO -- OUR DATA CORE THAT
MANAGES RESEARCH DATA AND HEALTH
INFORMATION EXCHANGE MAINTAINS A
LIST OF DOZENS UPON DOZENS IF
NOT MORE DATA SETS WE CAN THINK
ABOUT LINKING TO FROM CENSUS TO
COMMERCIAL DATA SETS TO MEDICARE
DATA SETS TO MEDICAID TO BMV TO
FINANCIAL CREDIT BUREAU DATA AND
SO MUCH TO PARTNERS AT HEALTH
SYSTEMS DATA SETS THAT IS WHAT
IS HAPPENING IS THAT WE ARE
SEEING A CONFLUENCE OF DATASETS
THAT ARE BEING JOINED TOGETHER
NOW. BECAUSE THE LARGER THE
DATA, THEORETICALLY, THE MORE
INSIGHT OR SMALLER OUR
CONFIDENCE MAYBE.
BUT THE MORE INSIGHT THAT WE ARE
SUPPOSEDLY ABLE TO GATHER.
THERE IS A RACE TOED TO CREATE
VERY LARGE DATA SETS.
SO, IT IS -- THE ANSWER TO YOUR
QUESTION IS THAT IT IS
DEFINITELY GROWING AND WON'T GET
SMALLER.
>>CAN I --
>>ONE MORE THING THEN.
I THINK THIS TIES INTO SOMETHING
THAT DR. MACHADO MENTIONED THAT
I THOUGHT WAS REALLY
INTERESTING. SOMEONE ON ONE OF
THE PANELS MENTIONED ABOUT HOW
QUICKLY TECHNOLOGY IS MOVING AND
THEN THE NIH TRYING TO KEEP
PACE; RIGHT?
SO, SOMETHING VERY SIMPLE THAT
WAS MENTIONED ABOUT, WELL,
THINGS ARE NOT REALLY EVER
COMPLETELY DEIDENTIFIED; RIGHT?
I CAN SAY FROM DIFFERENT
PROJECTS I HAVE BEEN A PART OF
IN TERMS OF COMMUNICATING
PROJECTS TO THE COMMUNITY,
SOMETHING AS SIMPLE AS THAT WE
HAVE NOT BEEN AS TRANSPARENT AS
WE SHOULD BE WITH COMMUNITIES
THAT IS SOMETHING THAT COULD BE
CHANGED TODAY.
SO, MOMENTS LIKE THAT, THAT IS
-- THANK YOU FOR JUST SAYING
THAT OUT LOUD.
WHY ARE WE NOT AS A RESEARCH
ENTERPRISE NOT BEING -- THERE
ARE THINGS WE CAN'T NECESSARILY
DOWN THE LINE MAYBE CONTROL FOR.
THERE ARE VERY SIMPLE POLICY
THINGS LIKE THAT, THAT CAN HELP
BUILD TRUST. WE ARE NOT DOING
THAT.
I WANTED TO PUT OUT THERE THAT
MOST PEOPLE THAT I HAVE SPOKEN
TO WHETHER RELATED TO ALL OF US
OR OTHER THINGS WOULD NOT MAKE
THAT DISTINCTION AND THEY THINK
DEIDENTIFIED MEANS DEIDENTIFIED.
SO, WE COULD DO BETTER TODAY I
THINK ON SOME OF THE ISSUES.
SO, OKAY.
>>LET ME JUST REPLY TO THAT. I
THINK THAT YOU ARE ABSOLUTELY
RIGHT.
WHAT IS BEING PORTRAYED, YOU
KNOW, TO MANY COMMUNITIES IT IS
-- WELL, YOU HAVE THIS DATASET.
NO ONE WILL FIND YOUR NAME OUT
OF THE DATASET AND IS NO THE
WHAT IS A SO CALLED ATTACK
MOTTO. ATTACK MOTTO IS I KNOW
YOU AND WANT TO KNOW SOMETHING
ABOUT YOU AND WILL GO THROUGH
EVERY ROLE OF THE DATABASE AND
READ OUT EVERYTHING THAT THERE
IS TO KNOW ABOUT YOU. THAT IS
THE KIND OF THING I THINK NEEDS
TO BE VERY EXPLICIT TO THOSE
WHOSE DATA ARE GOING TO BE THOSE
ROLES.
AND, AGAIN, IF YOU LINK THE ROLE
WILL BE EVEN LONGER WILL BE
EASIER TO FIND YOU.
>>YEAH.
>>YEAH. SO, I WANTED TO LET
PEOPLE KNOW WE HAVE BEEN GIVEN
10 MORE MINUTES .
WE ARE AT END OF OUR OFFICIAL
TIME NOW. WE HAVE BEEN GIVEN 10
MORE MINUTES.
>>LISA LEHMANN. THANK YOU FOR
A RICH CONVERSATION ON THIS
IMPORTANT TOPIC.
MY QUESTION HAS TO DO WITH THE
-- THE SUGGESTION EARLIER THAT
WE SHOULD GET INDIVIDUAL CONCEPT
WHERE POSSIBLE.
AND FOR DATA LINKAGE.
I THINK THAT RESEARCH COMMUNITY,
AT LEAST IN THE UNITED STATES,
THEY SEEM TO HAVE EMBRACED THE
ILLUSION OF DEIDENTIFICATION IN
ORDER TO -- WITH THE PUSHBACK
BEING THAT IT IS NOT FEASIBLE.
THERE IS TOO MUCH OF A BURDEN TO
GETTING INDIVIDUAL CONSENT FOR
THIS USE OF DATA AND CURIOUS
ABOUT PERSPECTIVES HOW WE CAN
CHANGE NORMS OR SHOULD WE TRY TO
CHANGE THOSE NORMS?
ARE TRADEOFFS WORTH IT?
IS THE RISK SIGNIFICANT ENOUGH
WE SHOULD BE FOCUSED ON
INDIVIDUAL CONSENT AT INDIVIDUAL
LEVEL IN A MEANINGFUL WAY?
OR IS IT NOT WORTH IT?
JUST CURIOUS WHAT PEOPLE'S
THOUGHTS ARE ON THAT.
>>TECHNICALLY, IT IS FEASIBLE
AND HOW MUCH IT COSTS WILL DE
PE
DEP
DEPEND.
IF IT IS A LOT, IT COSTS LESS,
RIGHT? EVERYONE DOING THIS ALL
THE TIME. I THINK THERE IS A
COST ISSUE TO BE LOOKED AT BUT
THAT IT IS PRACTICAL TO ASK YOU
ABOUT CERTAIN THINGS, YOU KNOW,
INCLUDING DO YOU WANT TO
PARTICIPATE IN RESEARCH AND MUST
BE PRACTICAL TO ASK IF YOU WANT
YOUR DATA LINKAGE OR NOT.
RIGHT?
>>I WOULD MAYBE SUBMIT THERE
VERY MUCH IS -- TECHNICAL
FEASIBILITY AND ECONOMIC
FEASIBILITY ARE DIFFERENT THINGS
AND SOME PEOPLE MIGHT ARGUE WE
-- WITH THE AMOUNT OF VOLUME OF
PATIENTS WE HAVE ACCESS TO OUR
IRB THAT HAS ACCEPTED THE
STATEMENT THAT IF WE WERE TO GO
OUT AND CONSENT EACH PERSON
INDIVIDUALLY THAT WOULD CREATE A
PAPER TRAIL THAT WAS ACTUALLY
INCREASING THE RISK FOR
RE-IDENTIFICATION OR EXPOSURE.
OUR IRB BUYS THAT EVERY ONE OF
POPULATION PROSPECTIVE DOING
TRIAL RECRUITMENT OBVIOUSLY THAT
IS A PATIENT LEVEL AND IF DOING
DEIDENTIFIED POPULATION LEVEL
LARGELY RETROSPECT DATABASE WE
ARE NOT CONSENTING PATIENTS.
>>NOT CONSENTING FOR RESEARCH
OR FOR LINKAGE.
>>RIGHT.
>>IT IS IMPORTANT TO
ACKNOWLEDGE THAT CURRENT NORM.
>>UH-HUH.
>>AND ASK OURSELVES ARE WE
SATISFIED WITH THAT?
BE HONEST WITH THE PUBLIC IF
THAT IS -- WHAT ARE REASONS FOR
THAT ARC AND WHY WE ARE NOT
GOING TOWARDS MORE MEANINGFUL
INDIVIDUAL CONSENT.
>>SO, I HAVE STATED A FEW TIMES
IN PAST TALKS THAT
DEIDENTIFICATION IS KIND OF A
MYTH. THERE HAVE BEEN MANY
BIOINFORMATICS PAPERS SHOWING TO
EIDENTIFY GENOMICS DATA
PARTICULARLY USE FOR PARAMETERS
AND THAT THE -- WE SHOULD LET NO
-- LET PARTICIPANTS KNOW ACTUAL
RISKS NOT INFORMING THEM ABOUT
ACTUAL RISKS IS FAILURE OF
INFORMED CONSENT AND FAILURE OF
UPHOLDING BELMONT PRINCIPLES WE
PUT IN PLACE FOR SEVERAL DECADES
AND WANT TO STATE HOW WE
CLASSIFY DATA DIFFERS BY COUNTRY
AND CONTEXT ALSO. HUMAN GUT
MICROBIOME DATA IN US IS
CONSIDERED NON-HUMAN SUBJECTS
DATA IN NEW ZEALAND AND
AUSTRALIA THAT IS HUMAN SUBJECTS
DATA AND ARBITRARY NATURE
CLASSIFYING AND LEGISLATING DATA
AND I WANT TO REMIND PEOPLE TOO
THAT I COME FROM AN INSTITUTION
THAT HAD A VERY MASSIVE AND
PUBLIC NOT EACH A WRIST SLAP BUT
SLAP ACROSS FACE ABOUT WHAT CAN
HAPPEN WHEN YOU DON'T PROPERLY
CONSENT TO PARTICIPANTS ABOUT
WHAT THEIR DATA IS ACTUALLY
BEING USED FOR AND HAVASUPAI
NATION SUING NEVADA BOARD OF
REGENTS COULD HAVE BANKRUPT
TLOOED STATE UNIVERSITIES IN
ARIZONA THAT LED TO $700,000
SETTLEMENT ORDER AND -- TRIBAL
NATIONS LANDS AND CAME AT
PIVOTAL TIME TRIBAL NATIONS
AROUND WORLD QUESTIONS PLACE IN
GENOMICS RESEARCH AND THERE IS
GENOMICS MORE ATORIA IN PLACE
AND WILL SAY UNFORTUNATELY WITH
BIG DATA ERA HARMONIZATION AND
SHIFT BACK TO SHIFTING NORMS
THAT WERE SHOWN TO BE
PROBLEMATIC IN THE PAST THAT
MANY VERSIONS OF THIS CASE ARE
HAPPENING ALL THE TIME AND LAST
YEAR ALONE I WAS ASKED TO
CONSULT ON THREE DIFFERENT
INSTANCES WHERE RESEARCHERS
SHARED DATA SETS WITH
COLLABORATORS AND WITH GRADUATE
STUDENTS IN MANY CASES WITHOUT
PROPERLY DULY CONCEPTING
COMMUNITIES ABOUT THIS TYPE OF
WORK AND IS GOING TO BLOW UP AT
SOME POINT IN THE FUTURE.
IF IT HAS NOT ALREADY.
WE HAVE TO THINK ABOUT THIS IN
TERMS OF THE TRUST AND DISTRUST
THAT IS ALREADY THAT WE ARE
GRAPPLING WITH IN TERMS OF ROLES
OF SCIENCE IN WORKING WITH THIS
TYPE OF DATA. WE HAVE TO THINK
ABOUT MOVING FORWARD IN WAYS
THAT ARE RESPECTFUL OF UTILIZING
DATA WE HAVE ON HAND AND WE ARE
ASKING OF NEW PARTICIPANTS THAT
ARE CONTRIBUTING DATA.
>>HI. MILDRED SHOW AND GETTING
BACK TO PILAR'S ORIGINAL
QUESTION ABOUT PREFERENCES AND
WHAT TO DO ABOUT PREVENSS AND
WHEN WE OFTEN ASK ABOUT PEOPLE'S
PRECHSS WE FIND THEY ARE NOT
ALWAYS THE SAME AND WHAT DO WE
DO WITH IT THAT?
I WANT TO PUT A MODEST PROPOSAL
OUT TO THINK ABOUT AS KRYSTAL
WAS SAYING NO THE THIS SORT OF
BINARY AND COMMUNITY
PERSPECTIVES AND RESEARCHER
PERSPECTIVES AND THINKING ABOUT
IT MORE BROADLY BECAUSE OF ALL
THESE DECISIONS THAT HAVE TO BE
MADE THAT ALL RESULT IN
TRADEOFFS THAT TRADEOFFS FALL
DIFFERENTLY ON DIFFERENT GROUPS.
CLINICIANS AND HEALTH
ADMINISTRATORS AND EVERYBODY.
SO, I THINK OR WANT TO PROPOSE
THINKING ABOUT PREVENSS THAT WE
DON'T JUST THINK ABOUT PREVENSS
BUT THINK ABOUT TRADEOFFS OR
PREVENSS IN THE LIGHT OF
TRADEOFFS AND ENCOURAGING
DIFFERENT STAKEHOLDER
COMMUNITIES UNDERSTANDING WHAT
ARE TRADEOFFS FOR OTHER
STAKEHOLDERS AS WELL AS FOR
ONE'S SELF OR OWN GROUP TO
BETTER UNDERSTAND WHY DIFFERENT
PEOPLE AND GROUPS HAVE TAKEN
CERTAIN POSITIONS OR NEAR FIELD
THAT THEY WANT CERTAIN THINGS.
IN ORDER TO BETTER RECONCILE
THOSE.
I THINK THAT, YOU KNOW, AGAIN,
GOING BACK TO WHAT MONICA SAID
EARLIER THAT IS A WAY FOR PEOPLE
TO UNDERSTAND TO KNOW WHAT THEY
DON'T KNOW.
>>ALL RIGHT. ONE MORE
QUESTION. WE HAVE LIKE TWO
MINUTES.
>>I WILL BE AS QUICK AS I CAN,
SORRY ATTORNEYS ARE USUALLY NOT
QUICK.
JEN WAGNER. I WANT TO GET BACK
TO DATA LINKAGE AND AGGREGATION
AS KEY TALKING POINT OR FOCUS
AND ASK THIS PANEL ABOUT HOW --
IF IT IS EVEN VIABLE TO HAVE A
SORT OF RETURN ON DATA USE SCORE
OR RETURN ON DATA AGGREGATION
SCORE WHERE, YOU KNOW, WE --
MANY PEOPLE HAVE BROUGHT UP THAT
PUBLIC BY AND LARGE DOESN'T
REALLY UNDERSTAND DATA ISSUES
THAT IS HARD TO CONCEPTUALIZE
AND HARD TO EXPLAIN IT AND
WONDER IF ANY HAD THOUGHT ABOUT
THIS CONCEPT LIKE RETURN ON
INVESTMENT SO INDIVIDUALS AND
COMMUNITIES FOR THAT MATTER
COULD THINK ABOUT WHAT ARE
RESEARCHERS GETTING OUT OF THIS
STEP?
WHETHER IT IS DATA OR LINKAGE OR
AGGREGATION AND MAKING THOSE
PRIVACY TRADEOFFS THAT GO INTO
THAT. AS I MENTIONED EARLIER
PRIVACY IN MY RESEARCH
EXPERIENCE IS NOT AN ABSOLUTE
BUT IS ONE OF TRADEOFFS.
HAVE YOU THOUGHT ABOUT RETURN ON
INVESTMENT OR DATA USE FOR
AGGREGATIONS AND IF NOT IS THAT
SOMETHING WE SHOULD TRY TO
RESEARCH?
>>SO, I HAVE THOUGHT ABOUT THAT
IN THE FOLLOWING CONTEXT. I --
I HAVE A BELIEF THAT IF I CAN'T
EXPLAIN IT TO MY 92-YEAR-OLD
GRANDMOTHER I SHOULDN'T BE
TALKING ABOUT IT AT ALL AND WHEN
I EXPLAINED THIS TO THE
92-YEAR-OLD GRANDMOTHER,
QUESTION WAS WHY ARE YOU DOING
THAT?
I HAVE TO HAVE RESPONSES READY.
THEY ARE NOT GOING TO BE --
THERE IS NOT GOING TO BE A
SINGLE METRIC OR EQUATION BUT
WILL BE STORIES.
STORIES WE TELL IN INDIANA ARE
MULTIPLE.
ONE, NO HUMAN BEING FOUND CARBON
MONDAY OXIDE OUTBREAK AT AN
APARTMENT COMPLEX. BUT, BY
INTEGRATING THREE HOSPITALS DATA
CIN DROEMIC SURVEILLANCE
DETECTION SYSTEM FOUND THE PEEK
ALERTED FIELD EPIDEMIOLOGISTS
CONTACTED HOSPITAL LOOKED LIKE
NOTHING IS GOING ON LOOKED AT
HOME ADDRESS AND LOOKS LIKE
SOMETHING IS GOING ON AND
IDENTIFIED AND LINKED TOGETHER
UTILIZATION DATA IDENTIFYING
PEOPLE WHO USED EMERGENCY
DEPARTMENTS 385 TIMES IN THREE
YEARS.
PERSON HAD TWO -- NO. THEY WERE
GOING EVERYWHERE IN THE STATE
AND PERSON HAD TWO DIAGNOSES.
NOBODY WAS TRACKING THEM AND NO.
1 HAD SICKLE CELL DISEASE CRISIS
ALL THE TIME AND NO. 2 DIAGNOSIS
THAT SEALED THE DEAL WAS
SCHIZOPHRENIA AND I HAVE OTHER
STORIES LIKE THAT WHERE WITHOUT
INTEGRATED DATA, WE COULD NOT
HAVE MADE A MEANINGFUL
DIFFERENCE IN MANY HOOZIERS
LIVES.
INCLUDING FOR RESEARCH PURPOSES
AND THERE ARE ACTUALLY VERY
PRAGMATIC REAL-WORLD STORIES WE
WANT TO TELL THE PEOPLE SO THEY
UNDERSTAND WE ARE NOT DOING THIS
AND WE HAD PROPELLER HEADED
THINKERS WE WANT TO THINK ABOUT
AND PRAGMATICALLY SHARE WITH YOU
SO YOU CAN UNDERSTAND THE VALUE
OF DOING SO.
>>WELL, I THINK THAT PUBLIC
HEALTH CASE IS A MUCH EASIER TO
DO THAN RESEARCH CASES IN WHICH
YOU WILL HAVE, YOU KNOW, SEVERAL
ATTEMPTS TOWARDS MORE KNOWLEDGE.
AND WHOLE THING IS ABOUT HOW
COMPLETE THE DATA ARE IN
LONGITUDINAL; RIGHT?
THAT IS WHERE LINKAGES
ESPECIALLY IN A FRAGMENTED
HEALTH CARE SYSTEM, THEY MAKE
THE DATA, YOU KNOW, BE BETTER.
BUT, THE -- AGAIN, IMMEDIATE
VALUE FOR A COMMUNITY, I THINK
THAT WE CAN'T SAY. WE JUST
CAN'T SAY. IT WILL BE VERY FEW
OF TRIALS OR STUDIES THAT COME
INTO CURES OR PREVENTIVE
MEASURES OR THINGS LIKE THAT.
BY TIME THEY HAVE BEEN --
INDIVIDUALS THAT CONTRIBUTED
MIGHT NOT BE THERE.
SO, I THINK THAT, YOU KNOW, IT
-- IT IS IMPORTANT THAT OUR
COMMUNITIES STAY TRUTHFUL ABOUT
THAT STATEMENT AND THE PROTOCOL;
RIGHT?
THERE MIGHT BE NO BENEFITS FOR
YOU.
AND IT THAT NEEDS TO BE SAID
LOUD AND CLEAR.
>>I WOULD LOVE TO KEEP GOING
ON. WE ARE OUT OF TIME.
>>THANK YOU, EVERYBODY.
>>THANK YOU.
>>[APPLAUSE].
>>WE WILL RECONVENE AT 4
O'CLOCK. WE WILL BE ON BREAK
UNTIL 4 P.M.
I'M SACHIN KHETERPAL
UNIVERSITY OF MICHIGAN.
SPECIALIZING IN MEDICAL AND
BIOETHICS AND LEGAL FOUNDATION
FOR ITEMS AND TO LEFT -- FOUNDER
FOR ORGANIZATION THAT WAS
PURCHASED BY THEM AND SPENT MANY
YEARS IN SPECIFIC AREA DEALING
WITH PRIVACY POLICY AT FEDERAL
LEVEL AND MUCH TO TEACH US
THROUGHOUT THE PROCESS AND WE
HAD A COUPLE GREAT CONVERSATIONS
AND THREE PANELS THAT HAD OWN
FOCUS AREAS THAT YOU SAW MELDED
TOGETHER AND WE WILL START WITH
AND WOULD LIKE PANELISTS TO GIVE
A SENSE WHAT THEY HEARD THAT
WERE COMMON THEMES AND COMMON
CONCEPTS ACROSS ISSUES OF NEW
DATA TYPES AND WHAT WE THINK ARE
NEW AND WILL BE NEW ONES EVERY
DAY AND CONCEPT OF AI AND ML AND
ALGORITHMS AND DATA LINKAGES
WHAT PHRASES OR ISSUES DID YOU
HEAR AND POTENTIALLY WHAT STEPS
WE CAN TAKE ACROSS PANELS AND
WILL ASK YOU TO BEGIN WITH
COMMENTS, MYIA.
>>THANK SO YOU MUCH. GREAT DAY
AND APPRECIATE COMMENTS HERE
TODAY. AMAZING. THINKING OF
OVERARCHING THINGS COMING TO ME
HEARING THE DAY AND READING
PACKAGE BEFOREHAND AND ROLE OF
COMMUNITY ENGAGEMENT WE HAVE
HEARD ABOUT A LOT ABOUT NEED TO
SWITCH ORDER OF THINGS AND
INVESTMENT IN COMMUNITY
ENGAGEMENT AND NOT GOING AS WE
GO TODAY AS AN AFTERTHOUGHT AND
SMALL COMPONENT OF STUDY AFTER
WE PUT RESEARCH QUESTION IN
GRANT AND DID IT BEFORE ENGAGING
IN BETTER UNDERSTANDING OF NEED
OF COMMUNITIES AND WANT TO SAY
HOWEVER ALSO WE NEED TO THINK
ABOUT EXPANDING IDEA OF
COMMUNITY ENGAGEMENT BEYOND
TRADITIONAL JENTDER
RACIAL/ETHNIC COMMUNITIES THERE
IS CONVERSATION ABOUT RARE
DISEASES AND GOES FAR MORE TO
PEOPLE WITH DISABILITIES AND
SUBCOMMUNITIES WITH PEOPLE WITH
DISABILITIES AND MARGINALIZED
COMMUNITIES BOTH THOSE ARE WHO
ARE MEDICALLY OR SPECIAL MEDICAL
NEEDS THAT ARE NOT NECESSARILY
PEOPLE WITH DISABILITIES I WANT
TO PUT IT OUT THERE AND PEOPLE I
HAVE SEEN BEFORE OR OTHER
COMMUNITIES THAT ARE TOO OFTEN
OFF THE RADAR. WE HAVE TO THINK
ABOUT COMMUNITIES AND
INTERSECTIONALITIES THAT ARE
ALSO WITHIN TRADITIONAL
COMMUNITIES BEGINNING THAT ARE
GENDER AND RACIAL ETHNICITY AND
HOMOGENOUS AND THINKING ABOUT
INTERSECTIONS WITHIN THEM THEM
AND HOW FOR EXAMPLE INDIGENOUS
FOLKS WITH STABILITIES THINKING
ABOUT ISSUES AND AFRICAN
AMERICANS THAT ARE POOR MAY
THINK ABOUT ISSUES DIFFERENTLY
FROM OTHERS THAT ARE ISSUES WE
HAVE TO THINK ABOUT IN TERMS
WHICH ARE COMMUNITIES WE ARE
ENGAGING WITH AND SHOULD RECEIVE
ATTENTION AND MIGHT WANT TO
EXPAND TO OTHER STAKEHOLDERS IN
CONVERSATIONS SUCH AS WE HEARD
ABOUT INSTITUTIONAL REVIEW
BOARDS AND CLINICIANS AND OTHER
STUDDIS WE CONDUCTED
PERSPECTIVES OF STAKEHOLDERS ARE
SIGNIFICANTLY DIFFERENT ON
ISSUES OF WHAT ARE -- HOW TO
COLLECT DATA AND WHAT ARE
BENEFITS OF RESEARCH AND HOW WE
IMPLEMENT IT AND SO FORTH AND
ISSUES TO THINK ABOUT AND
OVERARCHING THEME PRIVACY TRANCE
PARENTALLY OF RELATIONSHIP
BENEFITS COMING ACROSS IN ALL
PAMS AND WE HEAR ABOUT PRIVACY
AND TRANSPARENCY AND BENEFITS
AND NEITHER IS WELL-STUDIED FROM
COMMUNITY PERSPECTIVE AND
PRIVACY IS MENTION THE BY JEN
WHICH IS NOT EQUALIZE THE
COMMODITY IN ONE WAY OR ANOTHER
THAT IS HOW I GRABBED IT THAT IS
ABILITY OF MAINTAINING PRIVACY
MATTER OF PRIVILEGED AND
MARGINALIZED COMMUNITIES DON'T
HAVE THIS AND EMPHASIZING
THINKING ABOUT DATA LINK RAGES
THERE ARE ISSUES AND COMMUNITIES
AT GREATER RISK OF PRIVACY
BREACHES.
WE HAVEN'T HEARD ENOUGH ABOUT
THAT AND THINK ABOUT CONSENT AND
ONLY OPTION IS TO PARTICIPATE
VERSUS NO THE TO PARTICIPATE WE
HAVE TO THINK ABOUT IMPLICATIONS
AS WELL AND THIRD IS WORTHINESS
KEY WORD ACROSS THE PANELS AND
IMPORTANT THING TO THINK ABOUT
HERE IS THAT WE ALL FEEL WE KNOW
WHAT IT MEANS AND THINK WE HAVE
SIGNIFICANT DIFFERENCES WHAT ARE
COMPONENTS OF TRUSTWORTHINESS
AND I WILL SAY HERE AS WELL IN
FOCUS GROUPS WITH PEOPLE WHO ARE
DEAF AND WITH DEAF AND HARD OF
HEARING INDIVIDUALS THAT ARE
BLIND AND LOW VISION INDIVIDUALS
AND FOLKS WITH MOBILITY AND
DISABILITIES AND WE FIND
TRUSTWORTHINESS GOES HAND IN
HAND WITH ACCESSIBILITY THAT WE
HAVE NOT HEARD MUCH TODAY AT ALL
AND ARE DATAS WE ARE COLLECTING
ACCESSIBLE AND DEVISES FROM
WHICH DATA ARE COLLECTED ARE
ACCESSIBLE THEMSELVES AND
PRODUCTS ACCESSIBLE AND WE
HAVEN'T HEARD THEM MUCH TODAY
AND THEY ARE KEY TO
TRUSTWORTHINESS AND WE HAVE TO
THINK ABOUT AGAIN THINKING ABOUT
WHO MAKES DECISION ABOUT WHAT
TRUSTWORTHINESS IS AND FINALLY
WE HEARD NEED ABOUT THINKING
ABOUT LARGER PICTURE COMING
ABOUT VARIOUS CONTEXT PRIVACY
AND DATA SHARING TRUSTWORTHINESS
AND MILDRED MENTIONED IT CLEARLY
DIGITAL DEVICES OF AI AND ML AND
SO FORTH AND RAISES QUESTIONS TO
THINK AHEAD HOW WE ACTUALLY MOVE
ABOUT IN THINKING AND RETHINKING
EXISTING STRUCTURES TO BE
CONDUCTED IN HEALTH RESEARCH AND
HOW WE ADDRESS PROBLEM OF
MISINFORMATION THAT IS JAY'S
COMMENT AND OF INACCURATE
INFORMATION TO PRODUCE
IRONICALLY ACCURATE RESEARCH
RESULTS THAT IS SOMETHING WE
HAVE TO THINK ABOUT AND HOW TO
RESOLVE THAT AND HOW WE BALANCE
BETWEEN PRIVACY PROTECTION AND
DATA SHARING AND BENEFITS AND
THINKING ABOUT ALL THOSE IN
CONTEXT OF ETHICAL RESEARCH AND
JUSTICE AS KRYSTAL MENTIONED WHO
DOES DATA SHARING BENEFITS AND
PARTICIPANTS CONCEPTUALIZING
HERE IN COMMON GOOD AND
SOMETHING WE HAVEN'T HEARD
ENOUGH ABOUT AND HAVE TO THINK
ABOUT WHAT COMMON GOOD IS AND
WHO IS BENEFITING FROM IT AND
HOW AND WHY WE WILL MAKE IT AN
EQUAL OPPORTUNITY FOR EVERYONE.
THANK YOU.
>>DO WE STILL HAVE A COMMON
GOOD OR HAVE DIFFERENT COMMON
GOODS?
REALLY GOOD QUESTION.
I AM REALLY GLAD TO BE HERE. IT
HAS BEEN A LONG TIME SINCE I
HAVE HAD THE ABILITY TO HAVE A
DAY WHERE I JUST GET TO HEAR
ABOUT ALL OF THE RESEARCH THAT
WAS DONE IN THE COMMUNITY
CONVERSATIONS THAT TOOK PLACE IN
ABILITY TO REACT TO THOSE.
IT IS -- IT IS A GREAT DAY.
IT IS -- EVEN THOUGH WE OF
COURSE RAISED A LOT OF ISSUES
AND THINGS THAT STILL HAVE TO BE
RESOLVED I STILL APPRECIATE THIS
OPPORTUNITY TREMENDOUSLY. I
THINK LOTS OF WHAT I HEARD FROM
THE PANELS AND COMMUNITY
CONVERSATIONS IF IN PARTICULAR
RESONATED WITH ME BECAUSE IT TO
SOME EXTENT IT RE-ENFORCED LOTS
OF SURVEY DATA THAT HAS BEEN
PREVIOUSLY DONE THAT SAYS THAT
PATIENTS OR PEOPLE PREFER TO BE
ASKED IF YOU USE THEIR DATA FOR
RESEARCH AND ASK FOR MORE AND
HAVE MORE TRANSPARENCY AND A BIT
MORE CONTROL AND WHAT I LIKED A
LOT ABOUT THIS APPROACH AND FACT
IT WAS DONE IN SORT OF MORE
FOCUS GROUPS IT THAT WERE ACROSS
THE COUNTRY IS YOU GET NUANCE
THAT COMES WITH ABILITY TO
REALLY HAVE DEEP CONVERSATIONS
WITH PEOPLE IN CONTEXT WHAT ARE
REALLY COMPELLING USE CASES.
YOU DON'T GET KIND OF POLAR ENDS
OF, YOU KNOW, I WANT CONSENT AND
DEIDENTIFICATION. YOU ALSO GET
WHAT I THINK IS A GREATER
NUANCED APPRECIATION FOR WHAT IS
EXCITING TO SEE INCREASED
APPRECIATION AMONG PEOPLE FOR
POTENTIAL OF VALUE OF DATA
SHARING IN ADDITION TO CONCERNS
ABOUT DATA SHARING.
FAR TOO OFTEN WHAT YOU GET IN
SURVEYS IS MORE ALONG LINES OF
CONCERNS AND POTENTIAL FOR VALUE
PROPOSITION TO BE THERE WHICH I
THINK IS APPRECIATED BY
INCREASING NUMBER OF PEOPLE FOR
WHOM HEALTH CARE SYSTEM HAS LET
THEM DOWN IN ONE WAY OR ANOTHER
AND IN A SENSE THAT LIFE COULD
BE BETTER AND IF SHARING MY DATA
MAY LEAD TO THAT, THEN I AM ALL
FOR IT.
BUT, HOW DO WE GET THERE IN
TERMS OF PRIVACY CONCERNS?
THE OTHER THING THAT I LOVED
ABOUT HEARING THESE RESULTS IS
THAT IT WASN'T JUST FOCUSED ON I
WANT TO CONSENT TO ALL MY DATA
SHARING AND I KNOW THAT WE HAVE
HAD LOTS OF CONVERSATIONS ABOUT
SUBPOPULATIONS FOR WHOM THAT IS
IMPORTANT AND TYPES OF RESEARCH
FOR WHICH THAT IS MORE IMPORTANT
AND WE ALSO HAVE SCADS AND SCADS
OF RESEARCH ON HOW LIMITING
CONSENT CAN BE FOR A VEHICLE FOR
REALLY HONORING PEOPLE'S CHOICES
THAT IS USUALLY DONE AT A MOMENT
IN TIME AND WE EVEN WITH GREATER
TECHNIQUES FOR GRANULAR LEVELS
FOR CONSENT THERE ARE
LIMITATIONS TO HOW THAT CAN THEN
BE EXERCISED FOR LONG TERM
RESEARCH PROJECTS SUCH AS
DEVELOPMENT OF RENLTRIES AND NOT
NECESSARILY FULLY APPRECIATING
AT TIME YOU ARE GETTING CONSENT
WHAT ALL POTENTIAL USERS AND
USES OF DATA MIGHT BE AND PEOPLE
CONSENT ONLINE SO MUCH NOW FOR
SO MANY THINGS AND -- AND I
DON'T KNOW, JENNIFER. IT IS YOU
AND WHAT WE WANT AND WE TAP THE
THING AND DON'T READ THE FINE
PRINT. THERE ARE RESEARCH
PROJECTS TRYING TO CUT AGAINST
THAT PLACING A LITTLE HEALTHY
FRICTION AND DOESN'T NECESSARILY
NEED THAT CONSENT THAT IS SO
IMPROVED WE CAN REALLY RELY ON
IT AS BEST MECHANISM FOR GANLING
WHETHER RESEARCH IS TRUSTWORTHY
NECESSARILY.
AND SIMILARLY LAST PANEL IN
PARTICULAR IS DEIDENTIFICATION
IS NOT ANON MIZIZATION.
IT NEVER HAS BEEN.
IT IS A RISK REDUCTION TOOL.
IT IS NOT A -- A GUARANTEE.
IT IS PRIVACY AND ENHANCING
ARGUABLY BUT IS NOT PRIVACY
PRESERVING NOR PRIVACY
GUARANTEEING.
YET, THOSE ARE TWO PRONGS THAT
WE TEND TO LOOK TO. IS THIS
PRIVATE?
WE HAVE TAKEN YOUR IDENTIFIERS
OUT OF IT.
IS IT -- OR YOU HAVE CONSENTED
OR A COMBINATION OF THE TWO
RATHER THAN LOOKING TO SO MANY
OTHER COMPONENTS OF WHAT MAKES
RESEARCH POTENTIALLY TRUST
WORTHY AND A LOT OF WHICH CAME
OUT IN SOME OF THE
CONVERSATIONS.
IS IT TRANSPARENT?
DO I GET TO KNOW?
EVEN IF I DIDN'T HAVE A CHANCE
TO CONSENT IS THERE A PLACE TO
GO TO SEE HOW MY DATA IS BEING
USED?
WHO IS DOING IT AND RECEIVING IT
AND FOR WHAT PURPOSE?
WE SORT OF -- AGAIN, WE ORIENTED
OUR LAWS AND STANDARDS AROUND
DID WE GET CONSENT?
DID SOMEBODY LIKE AN IRB OR
PRIVACY BOARD APPROPRIATELY
APPROVED MODIFICATION OR WAIVING
OF IT AND IF IT WAS DEIDENTIFIED
YOU FRANKLY NEVER HAD TO GO
THROUGH ANY OF THE STEPS TO
BEGIN WITH. WE HAVE CLUNG TO
THOSE TOOLS AS THOUGH THEY ARE
IN VIOLATE.
WHAT I THINK COMMUNITY
CONVERSATIONS HAVE TOLD US IS
NOT THAT TOOLS ARE NOT
WORTHWHILE BUT THEY ARE NOT
ENOUGH.
THEY MAY IN SOME CASES BE
OBSTACLES TO RESEARCH IN SOME
CONSIDERATIONS AND THAT THERE IS
A DIFFERENT CONSTELLATION OF
PROTECTIONS AND WAYS TO ENGAGE
AND HONOR THE INTERESTS AND
NEEDS OF DIFFERENT COMMUNITIES
THAT WE HAVE REALLY UNDERTAPPED
FOR THE MOST PART.
>>WONDERFUL. THANK YOU.
REFLECTING UPON THAT, ONE THING
I HEARD ACROSS ALL THESE PANELS
IS THAT THIS CAN BE COMPLICATED.
IT -- IT ALMOST IS LIKE NIH
SHOULD TAKE THAT AS FEEDBACK TO
IT IS OUR JOB TO HELP SIMPLIFY
IT.
IT IS THE RESEARCH COMMUNITY'S
JOB TO FIND WAYS TO TAKE THINGS
EXTREMELY COMPLICATED MAKING
THEM SIMPLER AND OLYMPICS AND
GREAT ONES THAT MAKE IT LOOK
EASY AND RESOURCES WE HAVE
AVAILABLE TO US IT BECOMES OUR
JOB TO TAKE ALL THESE DIFFERENT
NUANCES AND SIMPLIFY THEM NOT
JUST FOR COMMUNITIES AND WOULD
ARGUE THOSE WITHIN OUR COMMUNITY
PARTICIPANTS AND PATIENTS AND
OUR POTENTIAL RESEARCH
PARTICIPANTS.
BUT, RESEARCHERS ALSO DON'T --
NUMBER OF COLLEAGUES I HAVE TO
EXPLAIN THAT ARE, YOU KNOW,
CLINICAL RESEARCHERS, THEY DON'T
KNOW DIFFERENCE BETWEEN
ANONYMIZED AND DEIDENTIFY AND
DON'T KNOW DIFFERENCE BETWEEN
YOU CAN'T RE-IDENTIFY AS
ATTESTATION I HAVE TO DELIVER
AND YOU TOLD ME IT WAS
DEIDENTIFIED AND HAVE TO ASSIGN
SOMETHING THAT WOULDN'T
RE-IDENTIFY AND COMPLEXITY IS A
CHARGE OR THEME I HEARD ACROSS
ALL THREE PANELISTS OR THAT
MIGHT BE A CALL TO ACTION AND
LOTS OF WORK MIGHT NEED TO BE
AROUND HOW TO SIMPLIFY THINGS TO
BEGIN MORE INFORMED
CONVERSATIONS THAW SAW AT ONE OF
THE COMMUNITY SESSIONS THAT WE
WERE TRYING TO EXPLAIN AI AND ML
AND GETTING A SIMPLE EXAMPLE
THAT IS A CLINICAL EXAMPLE THEY
LIVE WITH ON A DAILY BASIS AND
WHETHER OR NOT THEY ARE PART OF
HEALTH CARE REALLY DROVE
CONVERSATION INTO A PRODUCTIVE
LAND WHERE THEY COULD ACTUALLY
GIVE US FEEDBACK THEY COULDN'T
GIVE US.
I HEARD COMPLEXITY AND
POTENTIALLY THAT IS OUR CHARGE
FOR ACTION AND NEXT THING TO ASK
IS WHAT DID YOU NOT HEAR ACROSS
THE THREE WHEN YOU HEARD OF
TITLE OF PANELS AND TITLE WHY
YOU WOULD HANG OUT WITH US FOR A
DAY YOU WERE SURE YOU WOULD HEAR
THIS BUZZWORD OR TOPIC AND ARE
SHOCKED IT IS UNDEREMPHASIZED OR
NEARLY ABSENT WOULD BE
EDUCATIONAL FOR US.
>>THANKS. THINKING ACROSS THE
QUESTIONS BUT FIRST ONE WAS
REALLY ABOUT TOOLS THEMSELVES
AND DATA WE WANT TO COLLECT AND
SOCIAL MEDIA INFORMATION.
THE FACT WE HAVE TECH DIVIDE AND
WE HAVEN'T REALLY HEARD ABOUT
MUCH TODAY; RIGHT?
NOT EVERYONE HAS ACCESS TO
NONTRADITIONAL HEALTH DATA
INFORMATION. AGAIN, WHAT
IMPACTS WOULD THAT HAVE LATER ON
WITH BOTH ALGORITHMS AND DATA
LINKAGES AND EFFECTING
COMMUNITIES IS SOMETHING TO
THINK ABOUT AND EXISTING DIGITAL
DEVICES WE ARE THINKING ABOUT TO
COLLECT HEALTH DATA ARE NOT
EQUAL AND NOT ALL OF THEM ARE
ACCESSIBLE OR ALLOW FOR EVERYONE
TO TAKE PART IN. AGAIN, IF I
THINK ABOUT DISABILITY COMMUNITY
AND PEOPLE WITH DIVERSE
ABILITIES WE KNOW NOT ALL SOCIAL
MEDIA PLATFORMS ARE DISABILITY
ACCESSIBLE AND IF WE WANT TO USE
PLATFORMS FOR MAKING
GENERALIZABLE FINDINGS THAT IS
SOMETHING TO KEEP IN MIND.
I WONDER HOW WE ENSURE THAT
PLATFORMS OF SOCIAL MEDIA AND
NONTRADITIONAL HEALTH PLATFORMS
ARE SAFE FOR THE PUBLIC.
WE THINK ABOUT MENTAL HEALTH AND
DISCUSS SOME TEENANLER SCENARIOS
HERE AND OF COURSE THOSE PUBLIC
SPHERES ARE NOT ONLY FREE FROM
MISINFORMATION OR INACCURATE
INFORMATION BUT HAVE TO BE FREE
FROM BULLYING AND OFFENSIVE
LANGUAGE THAT IS HUMILIATING AND
OFFENSIVE AND RE-ENFORCING
STIGMA AND DISCRIMINATION AND
INCREASE MENTAL BURDEN FOR THOSE
USING SERVICES TO BEGIN WITH. I
HAVEN'T HEARD A LOT ABOUT THE
INCREASED RISK FOR CERTAIN
ALREADY MARGINALIZED POPULATIONS
DUE TO DATA LINKAGES.
I THINK THERE WAS HENCE ABOUT IT
IN SHAWN'S CONVERSATION ABOUT
MISMATCHING AND RACIALLIZED
RACIAL/ETHNIC AND ALSO MENTIONED
GENDER COMMUNITIES AND THINKING
IN BROADER SENSE IF WE HAVE
LARGE COHORTS WITH SMALL SAMPLES
THAT ARE UNIQUE, THOSE UNIQUE
INDIVIDUALS WILL BE MORE
DEIDENTIFIED AND WILL BE EASIER
TO IDENTIFY LATER ON AND WILL
HAVE PRIVACY BREACHES AND DATA
LINKAGES TO ADD HOAR LIKELY THEY
WILL BE IN LINKAGES AND THINKING
ABOUT TRADITIONAL HEALTH CARE
DATA ALONGSIDE GENOMIC DATA AND
ALONGSIDE GOVERNMENTAL BENEFITS
WHO'S IS ON UNEMPLOYMENT LIST
AND WHO HAS FOOD STAMP OPTIONS
AND INFORMATION IMPORTANT FOR
THINKING ABOUT SOCIAL
DETERMINANTS OF HEALTH HAS
IMPACTS FOR INCREASE THE RISK OF
CERTAIN POPULATIONS AND LOOKED
AT IT AS VERY GENERALIZABLE AS
ONE HOMOGENEOUS COMMUNITIES AND
FINALLY MORE ABOUT GROUP HARMS
WE HEARD ABOUT IN CONTEXT OF AI
AND IN TRIBAL COMMUNITIES HOW DO
WE BALANCE BETWEEN EF ORTS
CREATING GENERALIZABLE
APPROACHES TO DATA ANALYSIS AND
TECHNOLOGIES AND HOW WE ALSO
TAILOR THEM TO SPECIFIC
POPULATIONS THAT HAVE BEEN
SCARRED AND ABUSED AND
MISTREATED AND THINKING ABOUT
FIRST COMMENT AND HAS TO GO
BEYOND TRADITIONAL MARGINALIZED
COMMUNITIES THAT IS SOMETHING WE
HAVE TO REALLY THINK ABOUT
WORKFORCE DIVERSITY DIDN'T COME
UP MUCH BUT THOUGHT IT WOULD IN
ASPECTS OF PROCESS FROM DATA
COLLECTION TO DECIDING WHICH
QUESTIONS TO MOVING FORWARD WITH
AI AND ANALYSIS AND ALL THESE
ISSUES EVEN IF BIASES COULD BE
ADDRESSED PARICALLY HAVING
DIVERSE WORKFORCE PEOPLE COULD
BE AWARE OF CHALLENGES AND
ISSUES AND RAISE AWARENESS. I
WILL STOP HERE. WE WILL
CONTINUE.
>>THANKS. FOR ME, IT WASN'T SO
MUCH WHAT I DIDN'T HEAR FROM
CONVERSATIONS FROM PANELISTS
TODAY.
BECAUSE, YOU KNOW, THERE WAS
SUCH RICH CONVERSATION THAT WENT
ON WITH EACH OF THE PANELS THAT
ADDED TO WHAT WAS PRESENTED WITH
COMMUNITY CONVERSATIONS AND HARD
TO NOTICE SOMETHING LEFT OUT AND
MOST OF WHAT GOT RAISED ABOUT I
ONE PANELIST ONE TIME THAT WAS
SURPRISED TO NOT NECESSARILY
HAVE HEARD COMING FROM COMMUNITY
NOT AT LEVEL MENTIONED IN
SUMMARY COMMENTS AND WANT TO
UNDERSTAND WHAT PARTICIPANTS SAY
WHEN THEY SAY THEY WANT PRIVACY
PROTECTED.
WHAT DOES IT MEAN TO YOU? I CAN
TELL YOU MOST OF TIME WHEN
SOMEONE SAYS FROM DATA SCIENCE
COMMUNITY, WHAT THEY THINK THAT
MEANS IS HOW MUCH OF
DEIDENTIFIED THIS DATA AND HOW
MUCH HAVE I TAKEN INSUFFICIENT
IDENTIFYING QUALITIES OUT OF IT
TO USE IT WITHOUT VIOLATING YOUR
PRIVACY?
NOBODY REALLY KNOWS IT IS YOU
BUT A 58 YEAR OLD WOMAN USE THE
TO LIVE IN WASHINGTON, DC THEN
IN CALIFORNIA AND MOVED BACK TO
NOT QUITE WASHINGTON, DC LIKE
ALL THAT STUFF BUT THEY DON'T
KNOW THAT IS DEVEN MCGRAW AND
HOW I EXPLAIN HOW PRIVACY
PRESERVING LINKAGES WORK THEY
KNOW ALL THIS DATA ABOUT YOU BUT
DON'T KNOW IT IS YOU.
AT ANY RATE IT IS IMPORTANT TO
PROBE THAT A LITTLE MORE WHEN
YOU SAY YOU WANT PRIVACY
PROTECTED WHAT DOES IT MEAN YOU
TO IN POLICY CONTEXT FOR A LONG
TIME WE HAVE TRANSLATED THAT
INTO THAT MUST MEAN X AND NOT
SURE IT IS QUITE ACCURATE AND
COULD BE IT WAS A ROL UP OF
SURVEY DATA WE DIDN'T GET NUANCE
FOR PURPOSES OF THIS
CONVERSATION AND IS ALWAYS WHAT
I WANT TO UNDERSTAND.
AS JAY POINTED OUT, IT IS
DIFFERENT FOR PATIENTS THAT ARE
SICK AS WELL TO PATIENTS WHO
DON'T.
I PUSH BACK HARD ON NOTION THAT
PEOPLE THAT ARE SICK DON'T CARE
ABOUT THEIR PRIVACY. THEY DO
BUT THEY CARE DIFFERENTLY AND
HAVE A GREATER WEIGHT ON DATA
SHARING AND WANT TO ABSOLUTELY
KNOW WHO IS GETTING MY DATA FOR
WHAT PURPOSES HOW WILL THEY USE
IT AND WILL IT GO TO SOMEONE'S
BENEFIT EVEN IF IT WON'T BENEFIT
ME. TEAMS ALSO, PEOPLE THINK
THEY DON'T CARE ABOUT THEIR
PRIVACY. OH, THEY DO. THEY
JUST CARE ABOUT IT IN DIFFERENT
WAYS IN TERMS WHO THEY WANT TO
SHARE WITH AND WHO THEY DON'T
WANT TO SHARE WITH.
THE NOTION THAT PEOPLE WANT TO
KNOW THAT THE DATA IS GOING TO
GO TO SOME BENEFIT IS ANOTHER
ONE WHERE I WAS LEFT
QUESTIONING.
WHAT IS IT? WHAT KIND OF
BENEFIT? WHAT ARE PEOPLE
IDEALLY LOOKING FOR AND CONCEPT
OF RESEARCH IS IT MIGHT NOT
BENEFIT YOU PERSONALLY AT ALL OR
YOUR FAMILY MEMBERS.
IT IS BUILT ON A CONSTRUCT OF
ALTRUISM THAT YOU WANT TO HELP
PEOPLE LIKE YOU AND YOU WANT TO
HELP SUCCESSOR GENERATIONS IT
MIGHT NOT GENERATE A RESULT THAT
WILL ACTUALLY HELP YOU IN YOUR
LIFETIME DEPENDING ON
CIRCUMSTANCES AND WHAT DOES IT
MEAN WHEN PEOPLE SAY BENEFIT?
WE CAN THINK OF OBVIOUS THINGS
AROUND I CONTRIBUTE TODAY
RESEARCH ON THIS DRUG. YET, IT
IS SO EXPENSIVE I CAN'T GET IT.
IT IS A PRETTY OBVIOUS CASE. I
THINK PROBING A LITTLE MORE ON
WHAT EXPECTATIONS ARE FOR PEOPLE
AROUND REALIZATION OF BENEFIT
AND I THINK IT WOULD ALSO BE
HELPFUL AND CONCERNS THAT JAY
RAISE THE AROUND INTELLECTUAL
PROPERTY AND NOTION THAT WHETHER
YOU TECHNICALLY BY LAW OWN DATA
OR NOT WHEN YOU POSSESS IT YOU
HAVE DOMINION OVER IT AND GET TO
SAY HOW IT IS ACCESS USE THE AND
DISCLOSED SUBJECT TO WHATEVER
OTHER LEGAL CONSTRAINTS MIGHT BE
AROUND IS SOMETHING THAT WE DO
INCREASINGLY HEAR ABOUT FROM
PATIENTS.
THEY SEE DETRIMENTS OF NONDATA
SHARING AND THEY SEE WHAT
HAPPENS WHEN RESEARCH FOR -- ON
A DISEASE THAT IS VERY IMPORTANT
TO THEM IS SUPER SLOW.
BECAUSE THE DATA IS PROPRIETARY.
IT IS HARD FOR OTHERS TO GET AT
IT. I THINK THAT, THAT CONCERN
MAYBE DIDN'T GET AS MUCH FOCUS
BECAUSE OBVIOUSLY IF WE GO TOO
FAR ON OTHER SIDE AROUND MAKING
SURE COMMUNITY TRUSTS RESEARCH
WITHOUT ALSO UNDERSTANDING
COMMUNITY'S NEEDS FOR RESEARCH
TO BE DONE AND DONE QUICKLY WE
HAVEN'T SOLVED FOR THE WHOLE OF
THAT EQUATION AND TRUST IN
GOVERNMENT AND SCIENCE ERODING
WHICH WE SAW IN A BIG WAY DURING
COVID-19 PANDEMIC EMERGENCY
MAYBE OVER BUT AGREE WE STILL
HAVE A PANDEMIC.
IT IS SOMETHING THAT IS A HUGE
PROBLEM.
THAT I'M NOT SURE QUITE HOW TO
RESOLVE THAT BUBBLED UP IN
CONVERSATION AND TRIFTA IS
PROBABLY YOU TRUSTING IN
GOVERNMENT SITUATIONS
HISTORICALLY IS LOW AND WE
EXPANDED BASE OF PEOPLE WHO
DON'T THINK OR DON'T TRUST
SCIENCE OR TRUST THE GOVERNMENT.
WE ARE TRYING TO WORK WITH NIH
TO DEVELOP TECHNIQUES TO GAIN
MOR COMMUNITY TRUST AND HOW CAN
WE DO THAT AND LEVERAGE MORE OF
COMMUNITY INSTITUTIONS AND
ORGANIZATIONS THAT PEOPLE DO
TRUST IN TRUE PARTNERSHIP TO
MAKE THIS WORK A BIT BETTER?
THANK YOU.
>>WONDERFUL. THANK YOU FOR
THOSE EXAMPLES.
ONE THING I WAS SURPRISE THE I
DIDN'T HEAR IS THAT WE
POTENTIALLY HAVE MACRO FORCE
KROOEZATING A TENSION HERE NOW.
ON ONE SIDE WE MOVE MORE AND
MORE TOWARDS OPEN SCIENCE AND
ACCESS TO DATA AND NIH POLICIES
HAVING A DATA SHARING PLAN AND
WHETHER OR NOT IT INCLUDES
SHARING DATA IS A SEPARATE ISSUE
AND IN GENERAL ACADEMIC WORLD IS
IN ATIESY TO BE BLUNT ABOUT NOT
HAVING CONTROL OVER DATA AND ARE
EXPERIENCING WHAT CONSUMERS ARE
AND AS PART OF THAT THEY ARE NOT
USING CONSUMER PRIVACY AND
PATIENT PARTICIPANT PRIVACY AS
REASON TO FIGHT AGAINST THAT. I
WAS SURPRISED WE DIDN'T HEAR
ABOUT HOW TO RESOLVE TWO
MOVEMENTS AT [INDISCERNIBLE]
LEVEL THAT IS, ONE, CREATING
MORE AGENCY AND PRIVACY FOR
PEOPLE THAT ARE CREATING DATA
AND AT SAME TIME LIVING IN A
WORLD WHERE SAYING SCIENCE
DEMANDS OPEN DATA TO GET MORE
VALUE OUT OF THE RISK THAT THOSE
PARTICIPANTS HAVE ALREADY TAKEN
THAT IS THE PREMISES THAT IS IN
ORDER TO GENERATE ANY BENEFIT
FOR KNOWN FIXED RISK THAT THEY
TOOK, WE SHOULD SHARE DATA MORE
OPENLY.
YET, I DIDN'T HEAR THAT TODAY
THAT IS SOMETHING WE HAVE TO
FIGURE OUT AS A COMMUNITY AND
ARE THOSE -- IS IT A BALANCING
ACT OPPOSED TO TENSIONS THAT WE
MAKE SEEM IS MORE THAN ONE OR
OTHER AND IS A BALANCING ACT AND
SURPRISED I DIDN'T HEAR ABOUT IT
TODAY ORDERING CONVERSATIONS
WITH COMMUNITY PARTICIPANTS. WE
WILL MOVE TO QUESTION THAT IS
STRETCHING ACROSS THE THREE AND
HARKINS TO TOPIC I HEARD IN A
PANEL THAT IS OPPORTUNITY FOR
NIH TO LEAD HERE.
THERE IS A FAIR AMOUNT OF
RESOURCES AND FAIR AMOUNT OF
POLICY GUIDANCE AND TO BE HONEST
IS THE CRUX OF OUR END CHARGES
TO BE ABLE TO SAY WHAT SHOULD
NIH BE DOING TO LEAD BY EXAMPLE
WHICH OF DATA SETS AND WHICH OF
THE PARTICIPANT COMMUNITIES AND
WHICH OF THEIR LEVERS SHOULD BE
UTILIZED?
WHAT DID YOU HEAR ACROSS PANELS
OR REFLECTING ON PANELS WHAT
IDEAS YOU HAVE GIVEN EXPERTISE
HOW NIH COULD LEAD BY EXAMPLE IN
AREAS?
>>THANK YOU. YES. GREAT
SUGGESTION. YOU KNOW, THINKING
ABOUT HOW WE CAN ACTUALLY MAKE
CHANGES AND, AGAIN, THINKING
ABOUT STRUCTURAL ISSUES AND
THINK THAT HOW WE CAN AT LEAST
TRY TO NAVIGATE THE SYSTEM THAT
IS REALLY PERPLEX AND DIFFICULT.
NIH LEADERSHIP CAME UP BOTH IN
CONTEXT OF RESPONSIBLE DATA
SHARING PRACTICES CREATING
REGULATIONS IN OVERSIGHT IN
FIELD OF AI AND AL AND MORE
SIGNIFICANT ETHICS REGULATIONS
AND THINK IN CONTEXT OF
RESPONSIBLE DATA SHARING IS A
KEY AREA THAT NIH CAN PLAY A
ROLE AND SOME DISCUSSION IS HERE
ABOUT INCREASING SOLIDARITY
ABOUT NEED THAT WE NORMALLY
THINK ABOUT RESEARCH THAT IS
SOMETHING AIMED FOR EVERYONE AND
PEOPLE ARE STILL PARTICIPATING
FOR PUBLIC GOOD AND WE DON'T
HAVE SOLIDARITY THAT COMES WITH
IT. IN EUROPEAN COUNTRIES, DATA
COLLECTED FOR RESEARCH GOES BACK
TO HEALTH -- NATIONAL HEALTH
CARE SYSTEM TO IMPROVE
EVERYONE'S HEALTH OUTCOMES.
WE DON'T HAVE A SIMILAR SYSTEM.
WE HAVE TO THINK ABOUT WHAT TO
DO ABOUT IT AND SOME DISCUSSIONS
ABOUT INCREASING
INTERDISCIPLINARY WORK AND NIH
FOR SURE IS WORKING ON IT TO DO.
I THINK THAT WE HAVE TO THINK
ABOUT HOW MUCH MORE TIME IT
TAKES TO HAVE THOSE
INTERDISCIPLINARY CONVERSATIONS
ACROSS STAKEHOLDERS AND TAKES
TIME AND INVESTMENT AND LEARNING
EACH OTHER'S LANGUAGES AND AS
MILDRED SAID REQUIRES US TO
THINK WHAT STAKEHOLDERS KNOW
THAT THEY DON'T KNOW THEY KNOW
AND TAKES TIME TO THINK ABOUT
HOW TO SUPPORT THAT AND THINK
ABOUT REVISING CURRICULUM TO
CREATE EMPATHY AND ALL
STAKEHOLDERS INVOLVED ABOUT
RISKS AND RIGHT TO REASONABLE
INFERENCE ABOUT MODELING OF
PREDICTIVE ISSUES THAT ARE
THINGS THAT NIH CAN BE ACTUALLY
INVOLVED AND REQUIRING
CURRICULUM DEVELOPMENTS AND
RESPONSIBILITY AND NEEDS TO BE
MORE SAID ABOUT WHO GETS ACCESS
TO THE DATA AND WHAT DOES THAT
ENTITY GIVE BACK TO THE
COMMUNITY?
I THINK THERE IS A REASON FOR US
TO THINK THAT ACCESS TO DATA
THAT IS COLLECTED BY NIH-FUNDED
STUDIES SHOULD COME WITH SOME
PUBLIC GOOD AS A RESULT IN
EXCHANGE FOR THAT ACCESS. AT
MOMENT WE DON'T HAVE IT. IN
FACT SECONDARY USERS CAN DO WITH
RESEARCH DATA WHATEVER THEY WANT
ALMOST. ALSO, IT MEANS IN FACT
THEY WILL BE RESPONSIBLE FOR
EXACERBATING HEALTH DISPARITIES
THAT IS SOMETHING THAT CAME UP
IN STUDY WITH LOW BLIND
INDIVIDUALS THAT EXPRESSED VERY
HIGH INTEREST IN PARTICIPATING
IN PRECISION MEDICINE RESEARCH
WILLING TO SHARE AND PROVIDE
DATA AND WHEN IT CAME TO WHO ARE
YOU WILLING TO SHARE DATA WITH
ARE YOU ALLOWING US TO SHARE
DATA WITH NIH RESEARCHER SNZ.
IT WAS YES AND RESEARCHERS --
ACADEMIC RESEARCHERS AND
INSTITUTIONS, YES.
PHARMACEUTICAL AND PRIVATE
COMPANIES, DOWN. NO. WE WENT
AHEAD AND ASKED WHY.
REASON THEY SAID THEY ARE ONLY
ONES WHO DON'T CARE LATER ON IF
WE CAN SEE WHAT IS WRITTEN ON
DRUGS WHEN THEY DEVELOP DATA AND
MEDICATIONS ARE INACCESSIBLE
WITH INFORMATION AND EVEN THOUGH
THAT IS REQUIRED BY LAW AND WE
HAVE AMERICANS WITH DISABILITIES
LAW AND WE HAVE OTHER
LEGISLATION THAT REQUIRES IT.
THERE IS NO ENFORCEMENT.
SECONDARY USERS CAN USE DATA
BEING SHARED AND HAVE BENEFIT --
NOT TO ENSURE THEY ARE IMPROVING
HEALTH POPULATIONS HEALTH AND
THERE IS QUESTIONS ABOUT
COMMUNITY ENGAGEMENT COMPONENT
TO EVALUATION PROCESSES AND
PRODUCTION OF BOTH DATA SHARING
PRACTICES AS WELL AS AI AND
TECHNIQUES THAT ARE AL AND
CONVERSATIONS ABOUT BENEFIT
SHARING AND REQUIRING SECONDARY
AND PRIMARY USERS TO ACTUALLY
BRING BACKING SOMETHING TO THE
COMMUNITY IS SOMETHING THAT ARE
THINGS THAT WE REALLY HAVE TO
THINK ABOUT.
YOU KNOW WHAT?
THINKING ABOUT IT ALSO IN
CONTEXT OF COVID-19. THAT IS A
EXAMPLE THAT CAME UP. OF
COURSE, THERE IS UURGENCY IN
COVID-19 WE WENT THROUGH FIRST
WAVE THAT WAS HORRENDOUS AND
INVESTED MONEY AND TIME AND
EFFORT FOR PUBLIC AND PRIVATE
COLLABORATIONS AND WE HAVE
COVID-19 VACCINE AND WANT TO
REMIND EVERYONE THERE HAVE BEEN
LOTS OF CONTROVERSIES AROUND IT
PFIZER IS NOW RAISING PRICES
ONCE VACCINES ARE NO LONGER
SUBSIDIZED OR THREATENING TO DO
IT AND MODERNA PROVIDING
COMPENSATION FOR TECHNIQUE AND
SO FORTH AND THEY REACHED
AGREEMENT THIS WEEK OR LAST WEEK
WITH NIH AND ARE THINGS TO BE
ARRANGED AND REGULATED BEFORE
THEY GET ACCESS TO DATA AND TO
BENEFITS OF MAKING A FORTUNE.
THEY HAVE TO KNOW THAT HAVING
ACCESS TO DATA COMES WITH
RESPONSIBILITY TO SHARE BENEFIT
AND ENSURING IT IS IN FACT USED
TO REDUCE HEALTH DISPARITIES AND
FOR BENEFITS OF EVERYONE IN THIS
COUNTRY AND, OF COURSE, OUTSIDE
OF IT.
THANKS.
>>SO, ONE, A COUPLE THINGS I
THINK NIH COULD DO WITH
LEADERSHIP POSITION AND OFTEN
ITS ABILITY TO FUND DIFFERENT
PROJECTS IS IT IS IN A REALLY
GOOD POSITION. FIRST OF ALL,
WHEN THEY DO SET POLICY, IT DOES
CREATE A KIND OF -- YOU KNOW,
SOMETHING THAT OTHERS SEEK TO
FOLLOW.
AND MAYBE IT IS NOT AS STRONG AS
WE WOULD WANT IN THE DATA
SHARING CONTEXT BUT IS BETTER
THAN WHAT WAS THERE BEFORE IT
EXISTED. THEY HAVE A BULLY
PULPIT KIND OF A WAY OF BEING
INFLUENTIAL. THIS IS
PARTICULARLY IMPORTANT IN -- IN
PRIVATE SECTOR EFFORTS THIS
REMAIN LARGELY, WELL, LESS
REGULATED. DON'T WANT TO SAY
UNREGULATED. FOLKS THAT DON'T
HAVE TO FOLLOW HIPAA OR FOLLOW
THE COMMON RULE BECAUSE THEY ARE
NOT FEDERALLY FUNDED OR HAVEN'T
THEMSELVES SIGNED A FEDERALWIDE
INSURANCE AGREEMENT. YOU NEED
SOME STANDARDS TO POINT TO.
DREADED PHARMA COMPANIES TENT
TEND TO HAVE A TARGET ON THEIR
BACK AND SCIENTISTS I SPEAK TO
IN THOSE COMPANIES WANT TO BE
DOING SOMETHING THAT WON'T GET
THEM INTO TROUBLE AND THEY WANT
TO BE FOLLOWING SOMEONE'S
EXAMPLE EVEN IF THERE ARE NO THE
PARTICULAR TYPES OF LAWS AND NIH
CAN DO THAT.
IN TERMS OF ITS ABILITY TO
CREATE FUNDING AND SUPPORT FOR
COMMUNITY ENGAGEMENT MODELS AND
DIFFERENT WAYS OF TESTING
DIFFERENT DATA STEWARDSHIP TRUST
WORTHY SHARING MODELS THERE IS
HUGE OPPORTUNITY THERE THERE IS
GOOD MODELS OUT THERE COMMUNITY
IS ENGAGED ACTIVELY IN DATA
SHARING DECISIONS AND OPINIONS
THAT ARE ACTIVE SOUGHT AND
COMMUNITY GROUPS AND RUNNING
REGISTRIES WITH ACADEMIC MEDICAL
CENTERS AND PHARMACEUTICAL
COMPANIES WHERE THERE IS SYNERGY
OF INTEREST AND DEVELOPMENT OF
DATA SHARING POLICIES DONE IN
CONJUNCTION WITH THE COMMUNITY
BUT IS NOT LOTS OF FUNDING OUT
THERE FOR THINGS LIKE THAT STWL
IS NOT A LOT OF RESEARCH AND
SCHOLARSHIP GOING INTO
EVALUATING HOW WELL MODELS WORK
AND HOW MUCH THEY CAN CONTRIBUTE
TO CHANGES IN POLICY WRIT LARGE.
ONE THING A LITTLE BIT
CONCLUSION AT LEAST I DON'T WANT
TO DRAW ONE THAT EVERYONE MIGHT
DRAW BUT COMMUNITIES TO ANSWER
TO TRUST REED SEARCH MIGHT BE
QUITE DIFFERENT AND ALLOWING
MORE OF A KIND OF 1,000 FLOWERS
BLOOD APPROACH WE ARE ABLE TO
LEARN FROM. SOMEBODY HAS TO PUT
SOMETHING ON THE TABLE FOR THAT
TO HAPPEN MAYBE THERE COULD BE
DEVELOPMENT OF CORRECTOR OF
EXCELLENCE AROUND
COMMUNITY-INFORMED RESEARCH THAT
BUILDS ON THESE MICRO EXAMPLES
THROUGHOUT THE COUNTRY AND EVEN
ABROAD THAT WE CAN LEARN FROM
AND START TO INSIST TO BE
DEPLOYED AT SOME SORT OF MORE
SCALED LEVEL. BECAUSE TODAY, WE
HAVE POCKETS OF REALLY GOOD
THINGS THAT ARE HAPPENING AND
YET THEY ARE NOT VERY WIDELY
KNOWN AND NOBODY ELSE IS ABLE TO
LEARN FROM THEM AND THEY CAN'T
BE CERTAINLY BUBBLED UP TO THE
LEVEL WHERE WE CAN HAVE, YOU
KNOW, SOME CHANGES IN POLICY
THAT WOULD RESULT BECAUSE WE
HAVE TESTED SOME THINGS AND
FOUND THEY TEND TO WORK BETTER
AND NIH IS IN A REALLY GOOD
POSITION TO FUND SOME OF THAT
WORK AND CONGRESS HAS TO GIVE
THEM SOME MONEY TO FUND SOME OF
THAT WORK.
I THINK IT WOULD BE A VALUABLE
USE OF RESOURCES.
YOU MENTIONED SHARING OF
BENEFITS AND A COUPLE PANELS HAD
IDEA OF PAYING FOR DATA CAME UP.
I WANTED TO SHARE I'M NOT SURE
WHAT NIH CAN DO AROUND THAT.
OTHER THAN MAYBE FROM AN LC
PERSPECTIVE, YOU KNOW, THERE HAS
BEEN THIS SORT OF GENERAL
THOUGHT THAT IF WE PAY PEOPLE
FOR DATA, WE WILL BE POTENTIALLY
GIVING THEM A COERCESIVE
INCENTIVE TO SHARE DATA IN A
CONTEXT WHERE THAT WOULDN'T BE
GOOD FOR THEM IS PARTICULARLY A
CONCERN OF MARGINALIZED
POPULATIONS BEING SORT OF ABUSED
BECAUSE THEY NEED A RESOURCE.
IF WE ARE GOING TO PAY THEM FOR
THEIR DATA, THAT WILL BE
PROBLEMATIC FROM AN ETHICS
STANDPOINT. I GET ALL OF. THAT
I ALSO FEEL WE ARE NOT
ADDRESSING THE UNFAIRNESS AND
NOW I'M USING THE TERM FAIR NOT
IN TERMS OF THE TERM ACRONYM
FAIR BUT REGULAR OLD FAIR. THE
UNFAIRNESS OF THE FACT THAT
THERE ARE LOTS OF PEOPLE MAKING
MONEY ON THIS DATA AND THE ONLY
PERSON WHO IS NOT IS THE PERSON
WHO CONTRIBUTED TO IT. IS THERE
A RETURN OF VALUE IN ADDITION TO
RETURNING DATA TO COMMUNITIES TO
DO RESEARCH ON THAT THAT IS
SOMETHING THAT SUE BAKAN DID
EARLY WORK AND SO PLEASED TO SEE
HER NAME UP THERE I HAVEN'T SEEN
HER IN A LONG TIME AND OTHERS
TOO. I SINGLE OUT TOO. I KNOW
OF WORK SHE DID QUITE A NUMBER
OF YEARS AGO. I WAS SO
IMPRESSED BY IT BUT THE IDEA
THAT SOME OF THE BENEFIT IS
COMMERCIAL IN THE CONTEXT AND
WHY TO VICTOR GOT SPOILS OF ALL
OF THAT WHEN COMMUNITIES CAN'T
ACCESS DRUGS THAT GET DEVELOPED
AND DON'T GET ANY COMPENSATION
FOR THE RISK THAT THEY HAVE
ASSUMED IN CONTRIBUTING THEIR
DATA THAT IS IN MY VIEW WHAT THE
COMPENSATION IS FOR AND IT IS
NOT -- IF YOU STRUCTURE THE
RESEARCH SO IT IS NOT ABUSIVE
YOU ARE NOT LURING PEOPLE INTO A
BAD SITUATION. YOU ARE GIVING
THEM VALUE FOR THEIR TIME IF
THEY FILLED OUT A SURVEY AND FOR
BEING WILLING TO ENGAGE IN AN
ENTERPRISE THAT WE CANNOT
COMPLETELY ELIMINATE THE PRIVACY
RISKS FOR.
S
SO, THAT IS MY SOAP BOX FOR
AROUND THE PAYMENT. THANKS.
>>YEAH.
>>[LAUGHING].
>>LIKE NCA PRE-NIL COMMENTARY
THERE.
>>I KNOW. I'M NOT AN EXPERT IN
THAT BUT DO HAVE SIMILAR
OPINIONS WOULDN'T BE SURPRISED.
>>METAPHOR, YEAH. EXCELLENT.
I THINK THE NIH HAS SHOWN THAT
THEY CAN MOVE THE NEEDLE. THEY
HAVE DONE SO, WHETHER IT IS
REPORTING OF CLINICAL TRIALS;
RIGHT? OVER THE LAST, YOU KNOW
SHGS JUST COUPLE OF YEARS YOU
MIGHT NOT HAVE GOTTEN IT
PUBLISHED IN THE JOURNAL YOU
WANTED TO BUT EACH OF THE
PATIENTS CONSENTING TO POTENTIAL
CLINICAL TRIAL TOOK RISK AND
ADVANCING KNOWLEDGE AND DOESN'T
COME UP WITH THERAPEUTIC
KNOWLEDGE AT LEAST REPORTING ON
CLINICAL TRIALS.GOV YOU VIOLATED
THAT RISK AND [INDISCERNIBLE]
RESEARCH GROUP YOU WON'T GET
THAT NEXT TRAUNCH OF MONEY IF
YOU DON'T REPORT IT ON N- CLIN
TAL TRIALS.GOV NO BARRIERS OR
JOURNAL EDITOR REPORTING IT AND
THEY HAVE MADE MOVES THERE
COMING TO VERSIONS COMING TO
TRANSPARENCY AND SIMPLIFICATION
AND IDEA THAT WAS FLOATING
AROUND ON THE TABLE WAS, YOU
KNOW, OTHER PARTS OF THE
GOVERNMENT HAVE TAKEN VERY
AGGRESSIVE LOBBIED ENTITIES FOOD
AND DRUGS COMING UP WITH
STANDARDIZE THE LABELS WE ARE
ALL ACQUIRED AND UNDERSTANDING
BETTER NOW HAVING BREAKFAST WITH
KIDS THERE IS A SERIAL BOX I
KNOW HOW MUCH SUGAR IS FL THERE
AND COMPARING HONEY NUT TO
REGULAR CHEEROS AND ONE TASTES
BETTER THAN OTHER AND IT HAS
TWICE AS MUCH SHYING AR DAD THAT
WASN'T POSSIBLE 20 YEARS AGO NO
ONE COULD UNDERSTAND NUMBER OF
CARBOHYDRATES IN SOMETHING AND
WE TEND TO OVERSELL THE
COMPLEXITY OF WHAT WE DO IN
BIOMEDICAL RESEARCH AND DO YOU
THINK WE HAVE AMAZING CONCEPTS
THAT DON'T RESULT IN
UNDERSTANDING WHAT COULD NIH BE
DOING WHEN COMING TO IMPROVING
UNDERSTANDING AND AWARENESS AS
OPPOSE THE TO JUST CONSENT?
IS A 1-PAGE REQUIRED LABEL FOR A
CLINICAL TRIAL OR DATA SHARING
THAT IS PARTICIPANT FOCUSED WITH
MINIMUM FONT SIZE AND MAXIMUM
LENGTH OF PAGE AND SF24 THAT WE
LIVE BY AND CAN ADHERE TO AND
HOW COME WE HAVEN'T DONE THAT
WITH NIH RULES AND FOR WHAT
PARTICIPANTS THOUGHTS THOUGHTS
ON PROVOCATIVE CONCEPTS
TRANSPARENCY LEVEL I HEARD THE
THEME OVER AND OVER AGAIN TODAY.
>>QUESTION OF CONSENT FORMS HAS
BEEN WOW WE KNOW THEY DON'T
WORK.
>>YEAH.
>>MORE INFORMATION WE GIVE WE
WILL EXCEED ALREADY 20 PAGE
DOCUMENTS THAT WON'T WORK.
>>YEAH.
>>WE HAVE TO THINK ABOUT
ALTERNATIVE WAYS THINKING ABOUT
CONSENT THAT IS NOT A FORM BUT
PROCESS.
IT HAS TO BE BUILT INTO SMALL
PIECES IN ACCESSIBLE WAYS.
NOT JARGONS. AGAIN, JUST EVEN
DISCUSSING TODAY IDEA OF DATA
LINKAGES. WHAT DID IT TAKE YOU?
HOUR TO EXPLAIN IT. WE DON'T
GET PARTICIPANTS TO READ A
CONSENT FORM FOR AN HOUR AND
READING ABOUT ONE TOPIC THAT
TOOK AN HOUR TO UNDERSTAND AND
WE HAVE TO THINK OF ALTERNATIVE
WAYS AND TRYING TO THINK HOW WE
DEAL WITH THAT BEYOND IT. I
WANT TO MENTION ALSO ABOUT
DEVEN'S COMMENTING ABOUT BENEFIT
SHARING AND, YOU KNOW, IT IS NOT
JUST THE MONEY.
IT IS -- IT IS REALLY NOT JUST
ABOUT THE MONEY AND WHETHER OR
NOT PARTICIPANTS ARE BEING
COMPENSATED FOR THEIR
PARTICIPATION BUT ONE IS ABOUT
ACCESS TO BENEFITS AFTER THAT
FROM THE KNOWLEDGE FROM THE
MEDICAL DEVICES FOR THE
TREATMENTS AND SO FORTH.
WE TEND TO THINK ABOUT RESEARCH
AS SOMETHING THAT ENDS ONCE WE
HAVE THE FINDINGS.
I THINK WE HAVE TO RETHINK HOW
WE THINK ABOUT RESEARCH THAT
STARTS AT THE END OF THE
FINDINGS AND HOW WE HAVE TO
START TO THINK HOW WE TRANSLATE
THOSE FINDINGS INTO ACTUAL
PRACTICE. RESEARCH CYCLE HAS TO
INCLUDE THAT PROCESS. UNTIL WE
KNOW THAT SOMETHING IS ACTUALLY
WORKING, WE HAVE TO CONSIDER
THIS RESEARCH AND WHOLE CYCLE OF
RESEARCH HAS TO BE LONGER AND
REGARDS TO BENEFIT SHARING AND
BEYOND FINANCE WE HAVE BEEN
OVERCONSERVATIVE HOW MUCH TO GET
FOR PARTICIPATION IN RESEARCH
AND ASSUMING THEY WILL BE ABUSED
OR COERCED AND THEY ARE GETTING
ALMOST NOTHING FOR RESEARCH
PARTICIPATION AND DATA BEING
USED BY MULTIPLE RESEARCHER FOR
AS LONG TIME AND NO ONE IS
CONCERNED ABOUT THAT ABOUT YOU
THEY WILL GET TO $25 OR 100.
CON ON. WE HAVE TO THINK ABOUT
CONCEPTUALIZING RISK AND
COMPENSATION AND WHO IS GETTING
WHAT AND FOR WHAT I THOUGHT
APPLAUSE WAS GOING TO BREAK OUT
FOR THOSE WATCHING ONLINE.
>>I DON'T WANT TO CONTRADICT
COMPLEXITY OF CONSENT FORMS AND
ONC NATIONAL OFFICE COORDINATOR
FOR HEALTH OIT SPENT MONEY TO
DEVELOP A MODEL PRIVACY PRACTICE
LABEL INTEND TODAY CREATE A WAY
FOR CONSUMERS TO MAKE
COMPARISONS ACROSS DIFFERENT
TYPES OF CONSUMER IF FACING
TECHNOLOGY PRODUCTS BEFORE THEY
USE THEM IN A FOOD LABEL WAY TO
GET THEM TO STANDARDIZE HOW THEY
TALKED ABOUT DIFFERENT ASPECTS
OF DATA SHARING AND TO BE ABLE
TO PRESENT THAT INFORMATION IN A
COHERENT WAY ACROSS MULTIPLE
PRODUCTS FOR CONSUMERS THAT WAS
-- IT WAS A WELL DONE PIECE OF
WORK THAT WAS VOLUNTARY FOR ANY
TECHNOLOGY TO FILL IT OUT AND
YOU CAN PROBABLY GUESS HOW MANY
TECHNOLOGIES FILLED IT OUT.
ZERO. MOSTLY BECAUSE CHALLENGED
WITH NOTION THEY WOULD HAVE TO
FIT THEIR 15-PAGE PRIVACY POLICY
INTO 8 NEAT LITTLE BOXES WITHOUT
ANY NUANCE OR CAVEATS WAS NOT
SOMETHING THAT THEY WERE PREPARE
THE TO DO. ON TOP OF THAT,
THERE IS LEGAL DIMENSION AROUND
FEDERAL TRADE COMMISSIONS TO
CRACK DOWN ON DECEPTION AND IF
IT TURNS OWE THE FTC THINKS YOU
ARE BEING DECEPTIVE YOU MIGHT
PAY A BIG FAT FINE THAT IS
CERTAINLY AT ISSUE AND IS SOME
YOU KNOW WOULD BE INTERESTING TO
DUST THAT EFFORT OFF THINKING
ABOUT HOW IT MIGHT BE APPLICABLE
IN CONTEXT OF TRANSPARENCY
AROUND RESEARCH DATA SHARING
BECAUSE IT -- THEY DID EFFORT
TWICE AND DID IT FIRST TIME AND
WENT TO PUBLIC AND GOT
ADDITIONAL COMMENTARY REVISING
IT AGAIN AND TWO VERSIONS OF
THIS FLOATING AROUND FOR WHAT IT
IS WORTH.
>>I WOULDN'T TRUST CONSENT ALL
TOGETHER BUT THINK ABOUT HOW IT
IS USABLE.
>>YEAH.
>>FOR PARTICIPANTS AND THINKING
ABOUT STARTING TO TEST THEM AND
WHAT ARE IMPLICATIONS OF
MISUNDERSTANDING AND HAD
CONVERSATIONS AS WELL AND WHO
WILL BE LEFT OUT AS WELL AND
THINK THAT CONSENT FORMS ARE
OVERCOMPLICATED WAY TOO LONG.
WE KNOW THAT. WE NEED TO BREAK
IT DOWN AND MAKE IT MORE
INTERACTIVE AND SOMETHING MORE
ATTRACTIVE AND ONLINE SYSTEMS
AND VIDEOS AND SOMETHING THAT
PEOPLE CAN RELATE TO AND READ
AND LISTEN TO AND KIND OF
UNDERSTAND AND SO FORTH YEAH.
>>PRESUMABLY WE HAVE A QUESTION
FROM ONLINE.
>>WE DO THANKS AGAIN I'M JESSE
FROM THE NIH. I WILL ATTEMPT TO
CONTEXTUALIZE TWO QUESTIONS IT
THAT CAME IN, IN PREVIOUS PANELS
FOR THIS PANEL. I THINK A
PROPER CONTEXT FOR IT IS
THINKING ABOUT TENSION OF
TIMELINES.
SO, THE IDEA THAT COMMUNE
ENGAGEMENT TAKES A LONG TIME AND
TECHNOLOGIES WE ARE TALKING
ABOUT TODAY ARE EVOLVING
END-TO-END SQUARED TO END-TO-END
WHATEVER IS THANKS; RIGHT?
TWO QUESTIONS COMING UP IN THIS
SPACE IS IF WE WANT TO MAINTAIN
COMMUNITY TRUST WITH CONSIDER GS
TO CULTURAL DIFFERENCES AND
EXPERIENCES HOW DO WE DO THAT
WITH COMMUNITY ENGAGEMENT AND
THAT TENSION IN PLACE?
I THINK YOU TALKED ABOUT THIS IN
THIS PANEL A LITTLE BIT. I WILL
PUT IT OUT THERE. THE SECOND
QUESTION IS SOME OF THESE TYPES
OF RESEARCH WE HAVE BEEN TALKING
ABOUT THAT HAVE EFFECTS THAT GO
BEYOND A SINGLE GENERATION THAT
IMPACT FAMILIES FOR GENERATIONS
TO COME. WE DID HEAR IN SOME OF
THE WEBINARS ABOUT HOW CERTAIN
COMMUNITIES DO TAKE THAT
GENERATIONAL IMPACT INTO
CONTEXT.
AND THE QUESTION IS HOW -- HOW
SHOULD WE DO THAT APPROPRIATELY
AND RESPONSIBLY TO MAKE THE BEST
FORM OF COMMUNITY ENGAGEMENT.
THANKS.
>>THANK YOU. I THINK WE HAVE
THREE MINUTES TO ADDRESS TWO
SMALL TOPICS ACROSS GENERATIONS.
I WILL ADDRESS THE FIRST ONE
RELATED TO JUST TECHNOLOGY
COMMUNITY ENGAGEMENT TENSION.
IT IS PARTLY A FALSE CHOICE, TO
BE BLUNT. NONE OF OUR
TECHNOLOGIES MONTH OF THAT FAST.
WE HAVE TALKED ABOUT PRIVACY
PRESERVING RECORD LINKAGES FOR A
DECADE AND A HALF AND IS STILL A
NEW CONCEPT; RIGHT? TALKING
ABOUT COMMUNITIES BACK WHEN WE
WROTE THE HASH SOFTWARE A DECADE
AGO WE WOULD PROBABLY HAVE LOTS
MORE INFORMATION. CREATION OF
TECHNOLOGY AND IT SHOWING UP ON
NEW YORK TIMES AND IT ACTUALLY
BEING A VALUE TO AN END CONSUMER
IS STILL TYPICALLY A VERY LONG
TIME AND CONSUMER IS SEEING IT
LAUGHING AT CHATGPT THAT IS A
WEEK AND MOST OF WHAT WE ARE
DOING CHAT GP IT. IS REALLY
STUPID OR AMAZING AND WE DON'T
KNOW YET AND COMMUNITY
ENGAGEMENT IF DONE FROM
BEGINNING AS PART OF TECHNOLOGY
DEVELOPMENT IS NOT THE LONG --
THERE IS A METAPHOR HERE. LONG
STICK IN THE POLL. IT IS A
SECOND LANGUAGE, I APOLOGIZE.
NOT IT WILL SLOW US DOWN AND
COMMUNITY ENGAGEMENT DOESN'T
NEED TO SLOW US DOWN. YOU HAVE
TO INEVITABLY GET THERE AND
START AT BEGINNING OPPOSED TO
WAITING AT THE END. NOT SURE.
>>GREAT. I WILL ADD TO THAT,
THAT WE HAVE TO THINK ABOUT
COMMUNITY ENGAGEMENT AS
ENGAGEMENT NOT ONLY FOR PURPOSE
OF SPECIFIC RESEARCH AND WE CARE
ABOUT COMMUNITIES AND WHY WE
ENGAGE WITH THEM AND CARE ABOUT
COMMUNITIES AND ASK WHAT THEY
NEED AND WHAT THEY WANT AND HOW
WE CAN FACILITATE TECHNOLOGIES
AND RESEARCH IMPROVING HEALTH
OUTCOMES AND DO THAT THROUGHOUT
LONG BEFORE THE GRANT AND POST
THE GRANT.
AND AS THE -- THE TECHNOLOGY IS
DEVELOPED, THAT WILL CUT ACROSS
GENERATIONS BECAUSE IF WE CARE
ABOUT THE COMMUNITY AND WE
ENGAGE WITH COMMUNITY FOR SAKE
OF ENGAGEMENT WITH THE COMMUNITY
RATHER THAN SAKE OF SPECIFIC
RESEARCH AND THINK IT IS A
MINDSET WE HAVE TO RETHINK
ABOUT.
>>I WOULD AGREE WITH THAT.
COMMUNITIES THEMSELVES ALREADY
EXIST; RIGHT?
>>YEAH.
>>TIMING IS NOT ABOUT
ORGANIZING THEM. THEY EXIST.
TIMING IS TIME IT TAKES TO
ENGAGE THEM IN A WAY THAT BUILDS
THEIR TRUST THAT I COMPLETELY
AGREE WITH MYIA WE HAVE THIS
THING AND WANT YOU TO REALLY
ENDORSE IT. NO. WE WANT TO
WORK WITH YOU. TELL US WHAT
YOUR CONCERNS ARE. I THINK THIS
IS PARTICULARLY TRUE IN CONTEXTS
WHERE YOU ARE -- WHERE YOU HAVE
ACADEMIC INSTITUTIONS IMBEDDED
IN COMMUNITIES THAT FOR TOO LONG
HAVE IGNORED CONCERNS OF
COMMUNITY AND GETTING IN THERE
STARTING WITH COMMUNITY
CONVERSATIONS AND YOU BUILT THAT
TRUST AND DO THE WORK TO TRULY
KEEP THAT TRUST, YOU CAN -- YOU
CAN RIDE THAT RAIL INTO
ETERNITY.
>>YEAH.
>>AS LONG AS YOU CONTINUE TO DO
THE WORK.
IT IS WELL WORTH THE INVESTMENT
AT THE FRONT END. WITHOUT IT,
YOU COULD VERY EASILY GET
UNDERMINED IN WHAT YOU ARE
TRYING TO DO AND WITH IT EVEN
THOUGH IT TAKES TIME IN THE
BEGINNING, YOU CAN BANK ON THAT
SUCCESS AS LONG AS YOU CONTINUE
TO NOURISH THOSE RELATIONSHIPS
AND THAT THEY ARE TRULY
BIDIRECTIONAL AND NOT HOW CAN WE
GET THEM TO SAY YES TO WHAT WE
WANT TO DO.
>>IT REQUIRES THE SAME
OPERATIONAL RIGOR AS ANY OTHER
PART OF RESEARCH.
>>YEAH.
>>IMAGINE.
>>IT IS NOT FLUFFY. IT IS HARD
WORK AND OBJECTIVE AND
SUBJECTIVE AND EVERYTHING THAT
BIOMEDICAL SCIENCE IS SUPPOSED
TO DO RUNNING A CLINICAL TRIEF
OF 12,500 PATIENTS RELATED TO
ANTHESIA TECHNIQUES INVOLVED A
YEAR BEFORE SELECTION OUTCOME
BEFORE WE GOT THE GRANT. WE
HAVE A PARTICIPANT PANEL FOR 6.5
YEARS EVERY MONTH WE HAVE A
CONVERSATION WITH THEM NOT WHEN
FUNDERS DECIDE TO ASK HOW WE
ENGAGE WITH THEM AND AS A RESULT
EVERY MONTH SOMETHING ABOUT
TRIAL BENEFITS FROM ENGAGEMENT
PART OF OPERATIONAL MECHANISM
AND LIKE COMMITTEE AND
PARTICIPANTS AND TALK TO PANEL
MORE OFTEN THAN WE DO IRB PART
OF OPERATIONAL RIGSOR VIEWING
COMMUNITY ENGAGEMENT PART OF
SCIENCE OPPOSED TO INFLUENCING
SCIENCE THERE IS NO TIME
TENSION. IT IS ACTUALLY
POTENTIALLY GETTING YOU TO
ASKING THE RIGHT QUESTIONS SOON
ERR. WE KNOW THAT MOEFT OF THE
MONEY WE WASTE WE ARE ASKING THE
WRONG QUESTIONS AND MIGHT SAVE
US TIME DOING THAT.
I WOULD LOVE TO ANSWER THE
SECOND QUESTION, JOOESEE. WE
WILL TRY TO STAY ON TIME AND
WILL THANK YOU TO THE COLLEAGUES
TO MAYA AND DEVEN.
>>[APPLAUSE].
>>WE WILL BE WRAPPING THIS UP
WITH A FEW COMMENTS, I BELIEVE.
>>THANK YOU.
>>JUST CLOSING THOUGHTS AND WE
ARE KEEPING YOU FROM THE
SUNSHINE OUTSIDE. WE RECOGNIZE
THIS.
YOU HAVE HEARD MY VOICE. I WILL
NOT SPEAK FOR A LITTLE BIT.
PILAR, YOUR CLOSING THOUGHTS
BRINGING THIS TOGETHER AND NEXT
STEPS?
>>WELL, I CAN GO. SO, FIRST OF
ALL, I GUESS THAT WE WANT TO SAY
AS COCHAIRS OF THE WORKING GROUP
THAT WE APPRECIATE EVERYONE
SPENDING TIME WITH US HERE TODAY
AND WORKING GROUP AND MANY
MEMBERS OF WORKING GROUP ARE
HERE AND THOSE THAT ARE NOT WILL
HEAR ABOUT IT AND WE WILL TAKE
COMMENTS WE HEARD INTO ACCOUNT
AS WE PREPARE OUR REPORT.
SO, YOU GUYS WILL HAVE INPUT AS
WELL. SO, THANK YOU ALL.
>>WONDERFUL. YES. THANK YOU
ALL FOR BEING HERE TODAY. I
THINK THAT REALLY IMPORTANT IN
ENGAGEMENT WORK WE LIKE TO MAKE
SURE WE LET PEOPLE KNOW WHEN
THEY SPEND TIME WITH US TO
ENGAGE HOW. WE WANT TO BE GOOD
STEWARDS OF PEOPLE'S TIME;
RIGHT?
AND ARTICULATE WHAT WE WILL DO
WITH INSIGHTS WE LEARNED AND HOW
TO GO FORWARD. I WANT TO SAY
THAT I WANT TO ECHO WHAT PILAR
SAYS AND WE HEARD A LOT TODAY
THAT CAN INFORM DELIBERATIONS OF
WORKING GROUP THAT IS PRESENTED
TO PARENT COMMITTEE AND YOU WILL
KNOW FROM BEGINNING SESSIONS WE
REPORT DIRECTLY TO DIRECTOR OF
NIH. WE CAN BE ABLE TO MAKE
OFFER OUR ADVISORY COMMENTS.
AS WELL, WE ALSO -- ANOTHER
THING I TOOK AWAY FROM TODAY IS
WE HEARD FROM A RICH
MULTI-DISCIPLINARY GROUP HERE.
AND I THOUGHT THAT IT HELP THE
ME TO KIND OF THINK MORE DEEPLY
ABOUT ENGAGEMENT WORK CAN
ACTUALLY INFORM RESEARCH
POLICIES AND PRACTICES AND
PROCEDURES AND I THINK THAT
SOMETIMES THAT SOUNDS LIKE A
SIMPLE IDEA AND WE LISTEN TO
PEOPLE AND USE IT TO INFORM OUR
WORK. AS WE HEARD HERE TODAY,
THAT CAN BE A SORT OF
COMPLICATED PROCESS AND
ESPECIALLY CONSIDERING HOW IT
NEEDS TO BE ITDERATIVE AND SO
FORTH.
THAT IS ANOTHER THING. I WOULD
SAY, THIRDLY, I REALLY
APPRECIATED THE SESSION AS WELL.
IN THIS PARTICULAR INSTANCE, WE
MADE CHOICES THAT WERE WITH NIH
AND WITH PYXIS ABOUT HOW TO
ENGAGEMENT WORK FOR THIS
PARTICULAR CHARGE RELATED TO
DATA SCIENCE AND OF COURSE NIH
HAS A WIDE IS SCOPE. I THIS I
THAT POTENTIALLY WANTS TO THINK
ABOUT ENGAGEMENT TOOLS FOR OTHER
QUESTIONS. SO, IT IS A CHANCE
TO REALLY THINK ABOUT, YOU KNOW,
HOW -- WHAT THEIR ENGAGEMENT
APPROACH MIGHT LOOK LIKE GOING
FORWARD. WE CAN CONSIDER THAT
AS AN EXTRACT COMMITTEE AND MAKE
ALSO RECOMMENDATIONS IN THAT
AREA AS WELL.
THANK YOU ALL. THANK YOU.
>>YEAH. THANK YOU. ECHOING
THANKS FROM EVERYBODY ELSE ON
THE PANEL HERE TODAY.
THANK YOU FOR SPENDING TIME WITH
US.
THANK YOU TO EVERYONE WHO IS
REALLY CONTRIBUTING TO THIS
EFFORT AND BUILDING UPON WHAT
CINNAMON SAID AND OBVIOUSLY WE
ARE INTERESTED REALLY IN THE
OUTCOMES OF THIS PROJECT AND IN
LEARNING, YOU KNOW, HOW TO USE
ENGAGEMENT TO INFORM THESE KINDS
OF EFFORTS AND SPECIFICALLY HERE
FOR THE DATA SCIENCE CHARGE THAT
WAS GIVEN TO THE COMMITTEE.
AS I MENTIONED, IN THE BEGINNING
OF THE SESSION, WE REALLY ARE
TRYING TO USE THIS AS A WAY OF
THINKING ABOUT ENGAGEMENT WRIT
LARGE AND HOW WE DEVELOP POLICY
AND TO USE THIS AS SORT OF A,
YOU KNOW, A -- I DON'T WANT TO
SAY A PILOT. YOU KNOW, AS A
LEARNING EXPERIENCE FOR US AND
THINKING ABOUT HOW TO DO THIS IN
NEW WAY AND IN DEVELOPING POLICY
AT NIH. SO, I WANTED TO TELL
YOU ALL THAT WE ARE REALLY
COMMITTED TO THAT. WE ARE ALSO
REALLY COMMITTED TO -- WE SAID
AT THE BEGINNING THAT WE ARE
FORMING THESE RELATIONSHIPS WITH
COMMUNITIES AND THROUGH THIS
PROJECT.
WE REALLY WANT. WE REALLY ARE
INTERESTED IN WORKING WITH PYXIS
AND HEARING WHAT WE DO FROM THE
COMMITTEE ABOUT WAYS TO, YOU
KNOW, BUILD UPON, YOU KNOW, THIS
-- THIS -- YOU KNOW, BUILD UPON
THIS TRUST AND SORT OF PAY IT
BACK; RIGHT?
IN TERMS OF HOW TO CONTINUE TO
ENGAGE WITH THE COMMUNITIES AND
GROUPS THAT HAVE BEEN PART OF
THIS PARTICULAR ENGAGEMENT AS
WELL.
SO, SO THOSE ARE THINGS WE ARE
WORKING TOWARDS AND, AGAIN, I
WANT TO JUST TELL YOU ALL HOW
MUCH WE HAVE ENJOYED ENGAGING
WITH ALL OF YOU HERE TODAY AS
WELL. YOU KNOW, LOOKING FORWARD
TO OUTPUT OF THE COMMITTEE'S
REPORT LATER THIS YEAR. SO,
THANK YOU, EVERYONE, FOR A
WONDERFUL WORKSHOP. THANK YOU
TO ALL OF THOSE WHO WATCHED
ONLINE. AND I THINK THAT IS A
WRAP!
SO, THANK YOU, EVERYBODY.
>>[APPLAUSE] WRR REQUES