YOU MAY ENTER ANY QUESTIONS
FOR THE SPEAKERS USING THE Q&A
BOX IF YOU ARE ON THE TEAMS WEBINAR.
IF YOU ARE WATCHING VIA
VIDEOCAST SEND TO
ORWHINNOVATION@OD NNT NIH.GOV OR
USE LIVE FEEDBACK BUTTON.
WE WILL ANSWER QUESTIONS AS WE
ARE ABLE.
NEXT SLIDE, PLEASE.
THE AGENDA FOR TODAY IS SHOWN
HERE AND ALSO POSTED ON THE
EVENT WEBPAGE.
NEXT SLIDE, PLEASE.
AND WE ARE REALLY LOOKING
FORWARD TO TODAY'S SESSION.
NEXT SLIDE, PLEASE.
WE WILL FIRST HEAR FROM DR.
JANINE AUSTIN CLAYTON, THE
DIRECTOR OF THE NIH OFFICE OF
RESEARCH ON WOMEN'S HEALTH.
DR. CLAYTON WAS APPOINTED
ASSOCIATE DIRECTOR FOR RESEARCH
ON WOMEN'S HEALTH AND DIRECTOR
OF ORWH IN 2012.
DR. CLAYTON HAS STRENGTHENED NIH
SUPPORT FOR RESEARCH ON
DISEASES, DISORDERS AND
CONDITIONS THAT AFFECT WOMEN.
SHE IS THE ARCHITECT OF THE NIH
POLICY REQUIRING SCIENTISTS TO
CONSIDER SEX AS A BIOLOGICAL
VARIABLE ACROSS THE RESEARCH
SPECTRUM.
A PART OF NIH'S INITIATIVE TO
ENHANCE REPRODUCEABILITY, RIGOR
AND TRANSPARENCY.
IN 2021, DR. CLAYTON WAS ELECTED
TO THE BOARD OF DIRECTORS OF THE
AMERICAN ASSOCIATION FOR THE
ADVANCEMENT OF SCIENCE.
BEFORE JOINING ORWH, DR. CLAYTON
WAS THE DEPUTY CLINICAL DIRECTOR
OF THE NATIONAL EYE INSTITUTE.
AS A BOARD CERTIFIED
OPHTHALMOLOGIST, DR. CLAYndTON
HAS RESEARCH IN AUTOIMMUNE
OCULAR DISEASES AND SEX
DIFFERENCES IN DISEASE.
DR. CLAYTON, OVER TO YOU.
>> GREETINGS, EVERYONE.
IT IS MY DISTINCT PLEASURE TO
WELCOME YOU TO TODAY'S EVENT,
WHICH HONORS THE FIRST FULL TIME
DIRECTOR OF ORWH, AND ONE OF MY
MENTORS, DR. VIVIAN W. PINN.
THE VIVIAN W. PINN SYMPOSIUM
OCCURS EVERY YEAR IN NATIONAL
WOMEN'S HEALTH WEEK AND NIH'S
FLAGSHIP EVENT TO RECOGNIZE
NATIONAL WOMEN'S HEALTH WEEK.
THIS IS OUR FIRST EVENT OF 2025,
I'M SO HAPPY TO SEE OUR PARTNERS
AND COLLABORATORS TODAY.
I WOULD LIKE TO THANK THE
MEMBERS OF THE NIH PLANNING
COMMITTEE WHO WORKED TIRELESSLY
OVER THE LAST FEW MONTHS AND
SPECIAL GRATITUDE FOR OUR
LOGISTICS AND SUPPORT STAFF,
SCIENTIFIC PARTNERS AND BEHIND
THE SCENE EFFORTS.
ORWH IS CELEBRATING OUR 35th
ANNIVERSARY THIS SEPTEMBER, MUCH
HAS CHANGED OVER THE LAST 3 1/2
DEKDSS, OUR MISSION AND NORTH
STAR REMAINED CONSTANT.
TO PUT IT SIMPLY, WE ARE
COMMITTED TO ADVANCING RESEARCH
FOR THE HEALTH OF WOMEN.
EVERYTHING WE DO IS IN SERVICE
OF OUR CONGRESSLY ESTABLISHED
MISSION, TO ENHANCE AND EXPAND
WOMEN'S HEALTH RESEARCH, ENSURE
WOMEN ARE WEM REPRESENTED IN
CLINICAL RESEARCH AND PROMOTE
CAREER ADVANCEMENT FOR WOMEN'S
HEALTH RESEARCHERS.
THIS ALIGNS FOR THE NIH WOMEN'S
HEALTH.
A WORLD WHERE EVERY WOMAN
RECEIVES EVIDENCE-BASED CARE
LORED TO CIRCUMSTANCE, GOALS AND
NEEDS AND ALL WOMEN IN SCIENCE
CAREERS REACH THEIR FULL
POTENTIAL.
NEXT SLIDE.
IN 2000, THE VERY FIRST ORWH
SIGNATURE PROGRAM WAS
ESTABLISHED BY DR. PINN.
BUILDING INTERDISCIPLINARY
CAREERS IN WOMEN'S HEALTH,
ESTABLISHED A NEW CONGRESSIONAL
APPROPRIATION.
BIRCH IS A MENTORED CAREER
DEVELOPMENT PROGRAM DESIGNED TO
CONNECT JUNIOR FACULTY, BIRCH
SCHOLARS, WITH SENIOR FACULTY.
SINCE THE PROGRAM WAS CREATED IN
2000, OVER 800 JUNIOR FACULTY
HAVE BEEN PART OF THE BIRCH
CAREER PROGRAM FROM ORWH AND
AMONG ITS PARTNERS AND
INSTITUTES AND CENTERS.
TWO YEARS LATER THE SCORE
PROGRAM WAS ESTABLISHED.
SCORE IS NICHE'S ONLY
CENTER-LEVEL PROGRAM FOCUSED ON
SEX DIFFERENCES RESEARCH.
EACH SERVES AS A NATIONAL
RESOURCE FOR TRANSLATIONAL
RESEARCH TO IDENTIFY AND BETTER
UNDERSTAND THE ROLE OF
BIOLOGICAL SEX DIFFERENCES ON
THE HEALTH OF WOMEN.
THESE NIH SUPPORTED CENTERS OF
EXCELLENCE ARE VITAL HUBS FOR
RESEARCH ON SEX AND CAN PROVIDE
PILOT FUNDING, TRAINING AND
EDUCATION AND SCORE
INVESTIGATORS PROVIDE LEADERSHIP
IN THE DEVELOPMENT AND PROMOTION
OF STANDARDS RELATED TO SEX AS A
BIOLOGICAL VARIABLE AND SEX
DIFFERENCES IN BIOMEDICAL
RESEARCH.
IN 2016, WE HOSTED THE INAUGURAL
VIVIAN W. PINN SYMPOSIUM.
THE VALUE OF TRANSLATIONAL
RESEARCH TO WOMEN AND THE
NATIONAL CANCER INSTITUTE.
2023 CONGRESS ESTABLISHED THE
OFFICE OF AUTOIMMUNE DISEASE
RESEARCH IN ORWH AND LAST YEAR
NEW STRATEGIC PLAN FOR RESEARCH
ON THE HEALTH OF WOMEN WAS
RELEASED.
NEXT SLIDE.
WE KNOW THE HEALTH OF WOMEN IS
AFFECTED BY MANY BIOLOGICAL,
SOCIAL, ENVIRONMENTAL FACTORS
ACROSS THE LIFE COURSE.
THESE CAN INCLUDE BIOLOGICAL
SYSTEMS OR PROCESSES AND TRAITS
AS WELL AS LIFE CONTEXT AND THE
ENVIRONMENT.
BROADLY DEFINED.
A COMPLEX INTERSECTION OF A
MULTITUDE OF THESE IS INTERNAL
AND EXTERNAL FACTORS AFFECT THE
HEALTH STATUS, DISEASE
PRESENTATION AND TREATMENT
RESPONSE OF EACH WOMAN AS WELL
AS THE EFFECTS OF DISEASE AND
CONDITIONS ON A WOMAN'S QUALITY
OF LIFE.
SO CONSIDERATION OF THESE
DYNAMIC FACTORS IS NECESSARY FOR
A MORE COMPREHENSIVE
UNDERSTANDING OF THE HEALTH OF
WOMEN.
NEXT SLIDE, PLEASE.
WE ARE SO EXCITED TO CONVENE
TODAY'S EVENT FEATURING LEADING
VOICES IN DATA SCIENCE,
INNOVATION AND WOMEN'S HEALTH
AND I KNOW MANY OF YOU WILL
ENJOY OUR PRESENTATION.
MANY MAY ALSO HAVE QUESTIONS
ABOUT RECENT CHANGES AT NIH AND
I CAN'T SPEAK TO THE STATUS OF
DELIBERATIONS OR SPECIFIC
SITUATIONS, HOWEVER, IF CAN
ASSURE YOU THAT MUCH REMAINS TO
BE EXCITED ABOUT IN WOMEN'S
HEALTH RESEARCH AND INENCOURAGE
YOU TO STAY IN TOUCH WITH US VIA
OUR NEWSLETTER AND WEBSITE.
WITH THAT, I WILL TURN IT BACK
OVER.
>> THANK YOU SO MUCH, DR.
CLAYTON.
AS WE SPEND THE DAY THINKING
ABOUT DATA-DRIVEN INNOVATIONS
FOR THE HEALTH OF WOMEN, WE
WANTED TO BEGIN BY HIGHLIGHTED
SELECTED DATA RESOURCES ACROSS
THE NIH AVAILABLE TO SUPPORT
DATA SCIENCE, DATA SHARING AND
INNOVATION ACROSS THE WOMEN'S
HEALTH RESEARCH ECOSYSTEM.
AS YOU MAY KNOW IN 2021, NIH
ISSUED THE FINAL NIH POLICY FOR
DATA MANAGEMENT AND SHARING TO
PROMOTE SCIENTIFIC DATA SHARING.
SHARING SCIENTIFIC DATA
ACCELERATES BIOMEDICAL RESEARCH
DISCOVERY AND RIGOR IN PART BY
ENNABLING VALIDATION OF RESEARCH
RESULTS BY PROVIDING
ACCESSIBILITY TO HIGH-VALUE DATA
SETS AND BY PROMOTING DATA REUSE
FOR FUTURE RESEARCH STUDIES.
AS OUTLINED IN THE NIH-WIDE
STRATEGIC PLAN FOR RESEARCH ON
THE HEALTH OF WOMEN, ADVANCING
SCIENCE FOR THE HEALTH OF WOMEN
REQUIRES DATA SCIENCE AND DATA
MANAGEMENT PRACTICES ALONGSIDE
INNOVATIVE RESEARCH METHODS,
MEASUREMENTS AND CUTTING EDGE
TECHNOLOGIES TO PREVENT AND
TREAT CONDITIONS THAT AFFECT
WOMEN.
WE WILL HEAR FROM A NUMBER OF
PROGRAM STAFF ACROSS THE NIH WHO
WILL INTRODUCE NIH DATA
RESOURCES AND REPOSITORIES.
UP FIRST IS DR. LEE.
THE VIRTUAL PODIUM IS YOURS.
>> THANK YOU.
I'M THE ACTING CHIEF ENGAGEMENT
OFFICER FOR ALL OF US AT THE
NATIONAL INSTITUTES OF HEALTH.
BUILDING ONE OF THE LARGEST
RICHEST BIOMEDICAL RESEARCH OF
ITS TIME TO GAIN FINDINGS.
WE HOPE THESE FINDINGS CAN BE
USED FOR ALL OF US.
THE ALL OF US RESEARCH WORKBENCH
IS A SECURE CLOUD BASED PLATFORM
THAT THE DATA SET IS MADE
AVAILABLE TO RESEARCHERS
PROVIDING AN ENVIRONMENT FOR
DATA ANALYSIS AND COLLABORATION.
ONLY RESEARCHERS WHOSE
INSTITUTIONS HAVE SIGNED A DATA
USE AND REGISTRATION AGREEMENT
CAN REGISTER FOR THE RESEARCHER
WORKBENCH.
REGISTERED RESEARCHERS CAN GAIN
ACCESS TO INDIVIDUAL LEVEL DATA,
GENOMIC DATA AND A SUITE OF
TOOLS AND RESOURCES TO SUPPORT
THEIR PRODUCTS.
MANDATORY TRAININGS FOCUS ON
RESPONSIBILITY AND ETHICAL
RESEARCH USING THE DATA SET.
WHILE THERE IS NO COST FOR
RESEARCHERS TO REGISTER WITH THE
WORKBENCH AND BEGIN WORKING WITH
THE DATA SET, RESEARCHERS WILL
INCUR COSTS FOR COMPUTATION AND
DATA STORAGE OVER A CERTAIN
TIME.
NEXT SLIDE, PLEASE.
WITH OUR RECENT FEBRUARY DATA
RELEASE, THE PROGRAM'S GENETIC
DATA SET NOW INCLUDES WHOLE
GENOME SEQUENCES FROM 414
PARTICIPANTS AND THE SEQUENCES
TO 2700.
THE WORKBENCH INCLUDES
INFORMATION BY 633,000
PARTICIPANTS.
THE DATA SET INCLUDES EXTENSIVE
GENOMIC DATA, ELECTRONIC HEALTH
DATA, FIT BIT, COGNITIVE AND
ELECTRONIC HEALTH DATA ALL OF
WHICH GIVE RESEARCHERS A
MULTIDIMENSIONAL VIEW TO STUDY
THE CONTINUUM OF HEALTH AND
DISEASE OVER TIME.
NEXT SLIDE, PLEASE.
WOMEN REPRESENT THE MAJORITY OF
OUR PARTICIPANTS WITH 63% OF THE
ALL OF US DATA SET COMING FROM
ALMOST 336,000 DATA TYPES.
THE DATA AND TOOLS AVAILABLE ON
THE RESEARCHER WORKBENCH CAN
ENABLE REGISTERED RESEARCHER TO
DELVE DEEPER INTO WOMEN'S HEALTH
RESEARCH.
I INVITE YOU TO TAKE A CLOSER
LOOK OR GO TO
RESEARCHALLOFUS.ORG.
THANK YOU.
>> THANK YOU, DR. LEE.
WE WILL NOW HEAR FROM ROBIN
TAYLOR FROM THE NATIONAL LIBRARY
OF MEDICINE.
ROBIN, OVER TO YOU.
>> THANK YOU, ELIZABETH.
I'M ROBIN TAILOR, THE LEAD FOR
THE NIH COMMON DATA ELEMENT
REPOSITORY, WHICH HAS BEEN
HOSTED AND MANAGED BY THE
NATIONAL LIBRARY OF MEDICINE FOR
10 YEARS.
SO IN A MOMENT I WILL TALK ABOUT
WHAT COMMON DATA ELEMENTS ARE,
BUT FIRST I WANT TO TELL YOU
ABOUT SOME OF THE BENEFITS OF
COMMON DATA ELEMENTS.
CDEs HELP STANDARDIZE DATA
COLLECTION SO RESULTING DATA IS
INTEROPERABLE.
THIS FACILITATES REUSE OF DATA,
ALLOWING US TO COMBINE AND
COMPARE DATA SETS.
CDEs HELP IMPROVE DATA QUALITY,
INCREASING STATISTICAL POWER AND
REPRODUCEABILITY.
THEY HAVE PRACTICAL BENEFITS,
MAKING DATA COLLECTION AND
HARMONIZATION PROCESSES MORE
EFFICIENT.
THEY CAN SAVE RESEARCHERS TIME
AS THEY ARE SETTING UP THEIR
STUDIES.
THEY SUPPORT THE NIH DATA
MANAGEMENT AND SHARING POLICY.
SO WHAT ARE COMMON DATA ELEMENTS
OR CDEs?
THERE IS A HIGH-LEVEL DEFINITION
ON THIS SLIDE.
I WILL FLUSH THAT OUT.
THEY ARE STANDARDIZED PRECISELY
DEFINED QUESTIONS WITH A
SPECIFIED ALLOWABLE FORMAT AND
USED ACROSS SITES, STUDIES,
CLINICAL TRIALS TO ASSURE
CONSISTENT DATA COLLECTION.
A QUESTION IS ALWAYS ASKED IN
THE SAME WAY AND RESPOND DENTS
HAVE THE SAME ANSWERS TO CHOOSE
FROM.
THEY HAVE CLEARLY DEFINED
SEMANTICS.
THEY CAN BE COMPARED TO OR
HARMONIZED WITH OTHER CDEs BASED
ON THEIR MEANING.
THE MOST ESSENTIAL THING IS THEY
ARE USED CONSISTENTLY ACROSS
DIFFERENT STUDIES OR SITES OR
TRIALS.
FOR THIS REASON NIH STRONGLY
ENCOURAGES THE USE OF CDEs IN
RESEARCH.
THE SCIENTIFIC DATA COUNCIL
FORMED THE NIH CDE GOVERNANCE
COMMITTEE.
THE GOVERNANCE COMMITTEE REVIEWS
CDEs THAT ARE SUBMITTED TO THEM
AND DECIDE WHETHER THEY MERIT
DESIGNATION OF NIH ENDORSED.
WE WORK WITH THE REPOSITORY TEAM
AT NLM.
ONCE THE CDE'S ARE ENDORSED,
THEY ARE PUBLISHED IN THE CDE
REPOSITORY.
THE CDE REPOSITORY IS FREE AND
AVAILABLE TO THE PUBLIC.
IT CURRENTLY HAS OVER
22,000CDEs, WHICH INCLUDE 177
NIH ENDORSED.
A RELATIVELY SMALL NUMBER, BUT
IT IS GOING UP.
THERE ARE A WIDE VARIETY OF
DISEASES, DOMAINS AND TOPICS
INCLUDING CDEs ABOUT WOMEN'S
HEALTH.
IF YOU BROWSE THE REPOSITORY
SOME CDEs ARE FLAGGED AS GOLD
RIBBON.
THAT IS THE NICHE ENDORSED CDEs
AND THE ONES NOT YET ENDORSED.
THE ONES NOT YET ENDORSED
DOESN'T MEAN THEY ARE NOT VALID,
THEY JUST HAVEN'T BEEN THROUGH
THAT PROCESS YET.
THERE ARE SOME CDE RESOURCES YOU
CAN ACCESS ON YOUR OWN TIME.
YOU CAN FIND THEM FROM THE
RESOURCES PAGE FROM THE CDE
REPOSITORY WEBSITE.
THERE IS A SELF-PACED BASIC
TUTORIAL, THERE IS AN ON-DEMAND
COURSE USING THE CDE REPOSITORY
WITH A RECORDING AND INTERACTIVE
EXERCISES.
YOU CAN CONTACT US AT
SUPPORT.NLM.NIH.GOV.
>> UP NEXT WE WILL HEAR FROM
LAURA BARTLETT FROM THE NATIONAL
LIBRARY OF MEDICINE.
WELCOME, LAURA.
>> THANK YOU.
GOOD AFTERNOON, EVERYONE.
I'M EXCITED TO INTRODUCE YOU TO
DISCOVER WHR, A NEW RESOURCE TO
FACILITATE THE DISCOVERY OF
WOMEN'S HEALTH RESEARCH.
THIS EFFORT IS A COLLABORATION
BETWEEN THE NATIONAL LIBRARY OF
MEDICINE AND THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH.
LAUNCHED IN SEPTEMBER, 2024,
DISCOVER WHR IS DESIGNED TO BE A
FRONT DOOR FOR RESEARCHERS TO
LOCATE INFORMATION ON NIH
SUPPORTED GRANTS, INTRAMURAL
RESEARCH, CLINICAL TRIALS AND
LITERATURE.
OUR TEAM USES A DATA-DRIVEN
PRIORITIZATION TOOL TO SELECT
RESEARCH AREAS AND WE IMPLEMENT
FEEDBACK FROM USERS LIKE YOU.
NEXT SLIDE, PLEASE.
THE PORTAL USES NIH RESOURCES TO
DELIVER THE MOST UP-TO-DATE
INFORMATION BY DYNAMICALLY
RETRIEVING DATA IN REAL TIME.
THOSE INFORMATION RESOURCES
INCLUDE FUNDING OPPORTUNITIES
SUPPLIED BY THE NIH GUIDE FOR
GRANTS AND CONTRACTS.
AWARDED PROJECTS SUPPLIED BY NIH
REPORTER.
CLINICAL TRIALS SUPPLIED BY
CLINICALTRIALS.GOV.
SCIENTIFIC LITERATURE SUPPLIED
BY PUBMED AND PATIENT-FRIENDLY
HEALTH TOPIC SUMMARIES SUPPLIED
BY MEDLINE PLUS.
CURRENTLY THERE ARE FIVE
RESEARCH AREAS AVAILABLE,
MENOPAUSE, OUR TEAM IS
DEVELOPING NEW RESEARCH AREAS
AND MANY NEW ONES WILL BE
RELEASED OVER THE SURMT.
SOME OF THOSE ARE LISTED ON THE
SLIDE.
ORWH AND NLM WILL UPDATE
DISCOVER WHR WITH ADDITIONAL NIH
FUNDED RESEARCH AREA AND
RESOURCES.
COMMON DATA ELEMENTS, DATA
SOURCES AND STANDARDIZED
TERMINOLOGIES.
DATA SCIENCE TOOLS SUCH AS
ARTIFICIAL INTELLIGENCE WILL
ALSO BE ADDED TO THE SITE.
AND OUR OVERALL GOAL AND MISSION
IS THAT USERS WILL BE ABLE TO
QUICKLY LOCATE NIH-FUNDED
RESEARCH AND CLOSE GAPS IN
WOMEN'S HEALTH ACROSS THE LIFE
COURSE.
SO PLEASE VISIT THE DISCOVER WHR
WEBSITE AND PROVIDE OUR TEAM
WITH ANY FEEDBACK VIA THE GIVE
FEEDBACK BUTD ON THE YOU WILL
SEE ON THE PAGE.
SINCE WE ARE A NEW RESOURCE WE
ARE ALWAYS LOOKING TO GROW AND
IMPROVE.
THANK YOU.
>> THANK YOU.
UP NEXT WE WILL HEAR FROM DR.
JANET KARAMOTO CRAWFORD ON THE
NATIONAL INSTITUTE ON DRUG
ABUSE.
WELCOME, JANET.
>> THANK YOU, ELIZABETH.
GOOD AFTERNOON EVERYONE.
IMMATERIAL IS MY PLEASURE TO
SPEAK ABOUT THE NATIONAL
ADDICTION AND HIV ARCHIVE
PROGRAM.
IT IS A DATA ROW POZ TERRY
FUNDED BY THE NATIONAL INSTITUTE
ON DRUG ABUSE AND THEIR MISSION
IS TO ACQUIRE, PRESERVE AND
DISSEMINATE DATA RELEVANT TO
DRUG ADDICTION RESEARCH AND THE
INTERSECTION OF DRUG ADDICTION
AND HIV.
IT HAS BEEN AROUND SINCE 2009
AND HAS MADE 600 STUDIES
AVAILABLE TO THE RESEARCH
COMMITTEE.
THE ANNUAL SURVEY OF DRUG AND
ALCOHOL USE AND RELATED
ATTITUDES OF STUDENTS AS WELL AS
POPULATION ASSESSMENT OF TOBACCO
AND HEALTH STUDY, WHICH IS A
NATIONAL LONGITUDINAL STUDY FOR
TOBACCO ABUSE.
N NIDA PROVIDES DATA MANAGEMENT
AND SHARING COSTS.
AND IN TERMS OF DATA PREPARATION
AND PROVIDING LETTERS OF SUPPORT
FOR GRANT APPLICATIONS.
NEXT SLIDE, PLEASE.
A LITTLE MORE ABOUT NIDA, IT
ACCEPTS QUANTITATIVE,
QUALITATIVE AND IMAGING DATA,
DATA RELEVANT TO WOMEN'S HEALTH
RELATED TO DRUG ADDICTION, HIV
AND RELATED OUTCOMES.
THERE IS TYPICALLY NO COST TO
USE THE DATA.
THE RESEARCHERS LOOKING TO DEPOZ
THE DATA ARE ENCOURAGED FOR THE
DATA DEPOSITION COST AT THE TIME
THEY SUBMIT THE APPLICATION.
MANY SAY NIDA HAS BEEN COVERING
THE DEPOSITION COST IF APPROVED
BY THE NIDA PROGRAM.
THERE ARE A FEW STUDIES
AVAILABLE AS RESTRICTED CONTROL
WITH SENSITIVE INFORMATION.
THE MAJORITY OF THE DATA IN NIDA
IS PUBLIC USE THAT CAN BE
DOWNLOADED.
CONTROL DATA USERS MUST APPLY TO
ACCESS FOLLOWING SPECIFIC
PROCEED YOURS TO ENSURE PRIVACY
AND CONFIDENTIALITY.
WE OFFER VARIOUS WEBINARS ON HOW
TO USE AND SHARE THE DATA MADE
AVAILABLE IN NIDA.
AND THERE ARE WORKSHOPS.
THANK YOU FOR ALLOWING ME TO
TALK ABOUT NIDA.
>> THANK YOU SO MUCH, JANET.
>> UP NEXT DR. VANESSA MARSHALL
ON THE NATIONAL INSTITUTE OF
MINORITY HEALTH AND HEALTH
DISPARITIES.
VANESSA, OVER TO YOU.
>> HELLO, EVERYONE.
MY NAME IS DR. VANESSA MARSHALL,
A PROGRAM OFFICIAL TO A MINORITY
HEALTH AND HEALTH DISPARITIES.
AND TODAY I WILL BE SPEAKING
ABOUT THE PHENX, A PROJECTED
FUNDED SINCE 2007 AND
ADMINISTRATED BY THE NATIONAL
HUMAN GENOME RESEARCH INSTITUTE
WITH CO-FUNDING WITH OTHER NIH
INSTITUTES AND CENTERS,
INCLUDING THE NATIONAL INSTITUTE
ON MINORITY HEALTH AND HEALTH
DISPARITIES, THE OFFICE OF HEART
BLOOD LUNG INSTITUTE, THE OFFICE
OF DISEASE PREVENTION AND THE
NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDERS AND
STRUCK AND THE NATIONAL
INSTITUTE OF DRUG ABUSE.
IN ADDITION PRIOR FUNDING FOR
PHENX HAS BEEN PROVIDED BY OTHER
INSTITUTES AND CENTERS.
THIS IS A FREE ONLINE RESOURCE.
IT IS A CATALOG OF RECOMMENDED
STANDARD DATA COLLECTION
PROTOCOLS.
PHENX IS A WEB BASED CATALOG FOR
PHENO TYPES IN TRANSLATIONAL
STUDIES WITH CONSISTENT DATA
COLLECTION PROVIDING DETAILED
PROTOCOLS FOR COLLECTED NEW DATA
VIA DIFFERENT MODES OF
ADMINISTRATION.
STUDIES USED FOR PHENX PROTOCOLS
BENEFIT FROM CROSS STUDY
ANALYSIS TO INCREASE STATISTICAL
POWER AND TO REPLICATE RESULTS.
THE PHENX TOOLKIT HAS ADDED
PROTOCOLS FOR MEASURES SUCH AS
DEMOGRAPHIC, SOCIAL
ENVIRONMENTS, PHYSICAL ACTIVITY,
REPRODUCTIVE HEALTH CONDITION.
ADDITIONAL PHENX TOOLKIT HAS THE
SPECIALTY COLLECTIONS SUCH AS
SOCIAL DETERMINANTS OF HEALTH.
IN 2018 THE SOCIAL DETERMINANTS
OF HEALTH COLLECTION WAS
LAUNCHED BY THE NATIONAL
INSTITUTE OF MINORITY HEALTH AND
HEALTH DISPARITIES.
THIS TOOLKIT, SOCIAL
DETERMINANTS OF HEALTH
COLLECTION EXPANDING DATA
PROTOCOLS TO HELP MEASURES FOR
INDIVIDUAL AS WELL AS STRUCTURAL
FACTORS THAT SHAPE BEHAVIORAL
AND HEALTH OUTCOMES.
OVERALL, THE SOCIAL DETERMINANTS
OF HEALTH TOOLKIT PROVIDES
STANDARD DATA COLLECTION
PROTOCOLS THAT MAKES IT EASIER
FOR INVESTIGATORS TO SELECT
MEASURES FOR THE USE OF THEIR
OWN RESEARCH, SHARING AND
COMBINE DATA FROM DIFFERENT
STUDIES.
NEXT SLIDE.
THIS SLIDE HERE SHOWS A SCREEN
SHOT OF THE SOCIAL DETERMINANTS
OF HEALTH COLLECTION LOCATED ON
THE PHENX TOOLKIT WEBSITE.
THE DEMOGRAPHIC AND SOCIAL
COLLECTION CONSISTENTS OF 18
PROTOCOLS.
ADDITIONAL THERE ARE TWO
SPECIALTY COLLECTION PROTOCOLS,
THE INDIVIDUAL SPECIALTY
COLLECTION WHICH INCLUDES 23
PROTOCOLS AND THE STRUCTURAL
SOCIAL DETERMINES OF HEALTH
COLLECTIONS WHICH INCLUDES 14
PROTOCOLS.
NEXT SLIDE.
OVERALL, THE PHENX TOOLKIT IS A
FREE ONLINE RESOURCE.
IT INCLUDES WOMEN'S HEALTH DATA
FOR EACH PROTOCOL THE TOOLKIT
PROVIDES DETAILED INSTRUCTIONS
AND BIOINFORMATICS SUPPORT.
THERE ARE RECORDED WEBINARS,
TUTORIALS AND VIDEOS ONLINE.
THIS OPEN ACCESS RESOURCE WILL
HELP RESEARCHERS MEASURE AND
BETTER UNDERSTAND UPSTREAM
FACTORS OVERALL TO SHAPE HEALTH
BEHAVIORS AND HEALTH OUTCOMES.
PLEASE CONTACT ME FOR ANY
ADDITIONAL INFORMATION.
THANK YOU.
>> THANK YOU, DR. MARSHALL.
AND UP NEXT WE WILL HEAR FROM
DR. DEBORAH DURAN, ALSO AT THE
NATIONAL INSTITUTE OF MINORITY
HEALTH AND HEALTH DISPARITIES.
OVER TO YOU.
>> I WOULD LIKE TO PRESENT TO
YOU THE SHARED CLOUD PLATFORM.
ON THIS PLATFORM, IT IS DESIGNED
FOR POPULATION HEALTH TYPES OF
STUDIES.
WE HAVE 300 PLUS DATA SETS
CENTRALIZED, IF THEY DEAL WITH
HUMANS INCLUDE FEMALE DATA.
IT ALSO INCLUDES ALL THE SOCIAL
SCIENCE POPULATION SCIENCE TYPES
OF DATA.
AND WE HAVE DEVELOPED THE
PLATFORM SO THAT IT CAN MERGE
WITH OTHER BIOMEDICAL PLATFORMS
SO THAT YOU CAN DO THINGS LIKE
EPIGENETIC STUDIES.
IN THIS CLOUD WE TEACH
ARTIFICIAL INTELLIGENCE, THE USE
OF ARTIFICIAL INTELLIGENCE
RESEARCH SO WE CAN HAVE A
REDUCTION OF ERRORS SO THAT WE
CAN REDUCED THE BIASES AGAINST
WOMEN AND OFTENTIMES OTHER
MARGINALIZED OR UNREPRESENTED
POPULATIONS IN THE DATA
SCIENCES.
WE DO A SERIES OF WEBINARS CALL
THINK-A THONS.
WE UPSCALE NOVICE USERS IN DATA
SCIENCE.
WE HELP THEM LEARN HOW TO USE
CLOUD COMPUTING SKILLS TO HAVE
BIGGER DATA SETS IN CONDUCTING
THEIR RESEARCH TO HAVE MORE
INSIGHTS INTO WHATEVER THEY ARE
INVESTIGATING.
THE OTHER PIECE THAT WE TRY TO
DO WITH THE SCHARE PLATFORM IS
THAT WE UNDERSTAND THAT THERE
ARE COMMUNITY COLLEGES AND
LOW-RESOURCE INSTITUTIONS AND
ORGANIZATIONS THAT CANNOT AFFORD
A CLOUD.
SO WE OFFER THIS PLATFORM FOR
CLASSROOM USE, AS DATA CENTERS,
THESE INSTITUTIONS IN ORDER TO
BE ABLE TO FOSTER DATA
SCIENTISTS IN INSTITUTIONS THAT
CAN'T HAVE THESE PROGRAMS
THEMSELVES BECAUSE THEY DON'T
HAVE ENOUGH FUNDS.
IN ORDER TO DO THIS, WE ALSO
OFFER CUT-AND-PASTE CODE ON OUR
PLATFORM IS CALLED A NOTEBOOK.
IN THAT CUT-AND-PASTE FORM THEY
CAN USE PYTHON.
THEY CAN USE VISUALIZATION TOOLS
AND ALL THEY HAVE TO DO IS CUT
AND PASTE TO START THEIR JOURNEY
INTO DATA SCIENCE.
AND THE LAST THING THAT WE DO IS
WE HAVE A REPOSITORY TO FULFILL
THE DATA MANAGEMENT AND SHARING
REQUIREMENTS AT NIH.
AND IN THIS REPOSITORY, WE
ACTUALLY REQUIRE EVERY PROJECT
THAT IS SUBMITTED TO ALIGN WITH
A CORE SET OF DATA ELEMENTS.
IT DOESN'T MEAN YOU HAVE TO USE
THEM EXACTLY.
IT MEANS THAT WE CAN ALSO MAP TO
THEM.
WHAT THIS DOES IS IT ALLOWS
THERE TO BE MORE DATA
INTEROPERABILITY ACROSS STUDIES
WHEN THEY ARE LOOKING AT THE
SAME TYPES OF COMMON DATA
ELEMENTS.
IN THE REPOSITORY WE HAVE THIS
ABILITY TO JUST POST OR YOU CAN
USE IT AS AN ONGOING DATA
CENTER.
NEXT.
IT IS A REPOSITORY.
WE DO HAVE PRIMARILY TABULAR
DATA.
YES, WOMEN SEX AND PLACE BASED
FACTORS ARE INCLUDED.
THERE IS A MINIMAL COST.
WE ACTUALLY DEVELOPED THE
PLATFORM SO IT IS ONE OF THE
LOWEST COST USE BECAUSE WE HOST
MOST OF THE DATA OURSELVES AND
WE'VE SET UP USER-FRIENDLY
COST-EFFECTIVE TOOLS.
THERE'S NO RESTRICTION.
IT IS OPEN ACCESS FOR SOME PARTS
OF THE DATA.
SOME DATA HAVE PII SO THERE HAS
TO BE DATA USE AGREEMENTS AND WE
DO TRAINING, NOT ONLY THROUGH
OUR THINK-A-THONS.
BUT WE HAVE OFFICE HOURS TO USE
THE PLATFORM.
THERE'S THE LINKS ON THE SLIDE
AS WELL AS ON THE OTHER SLIDE
FOR THE SHARED REPOSITORY
ITSELF.
PLEASE CONTACT ME IF YOU HAVE
ANY QUESTIONS OR WOULD LIKE TO
USE THE REPOSITORY.
>> THANK YOU DR. DURAN.
AND THANK YOU TO ALL OF OUR
PRESENTERS FROM ACROSS NIH WHO
HAVE GIVEN A VERY RAPID OVERVIEW
OF THESE RESOURCES AND
REPOSITORIES.
WE HAVE PREPARED A DIGITAL
RESOURCE THAT INCLUDES
INFORMATION ABOUT THESE VARIOUS
NIH DATA RESOURCES, INCLUDING
ADDITIONAL RESOURCES SHOWN HERE
ON THIS SLIDE.
FOR THOSE OF YOU VIEWING ON THE
TEAMS WEBINAR, YOU CAN ACCESS
THAT DIGITAL RESOURCE USING THE
LINK THAT WAS POSTED.
FOR THOSE OF YOU WATCHING VIA
NIH VIDEOCAST, YOU CAN ACCESS
THE RESOURCE FROM THE ORWH
WEBPAGE ON THE TODAY'S EVENT.
SO WE ENCOURAGE YOU TO PLEASE
TAKE A LOOK AND FAMILIARIZE
YOURSELF WITH ANY RESOURCES NEW
TO YOU AND FEEL FREE TO REACH
OUT WITH ANY QUESTIONS.
WE ALSO WANTED TO ENCOURAGE
FOLKS TO CONTINUE SENDING
QUESTIONS THROUGH THE Q&A BOX ON
THE TEAMS WEBINAR OR USING THE
LIVE FEEDBACK OPTION FOR THOSE
OF YOU ON NIH VIDEOCAST.
AND WE WILL GO AHEAD AND TAKE A
SHORT BREAK BEFORE RETURNING
WITH OUR CAPSTONE PRESENTATION,
WHICH WILL BEGIN AT 1:00 P.M.
EASTERN TIME.
SO WE WILL LOOK FORWARD TO
SEEING YOU IN JUST A FEW MINUTES
FOR OUR CAPSTONE TALK.
THANK YOU.
I HOPE YOU WERE ABLE TO HAVE A
SHORT STRETCH OR SNACK, IF YOU
NEEDED EITHER OF THOSE THINGS.
I'LL NOW TURN THINGS OVER TO DR.
LAUREN FORDYCE WHO WILL
INTRODUCE OUR CAPSTONE SPEAKER.
OVER TO YOU, LAUREN.
>> THANKS.
GOOD AFTERNOON, ALL.
MY NAME IS LAUREN FORDYCE.
I'M A HEALTH SCIENCE
ADMINISTRATOR IN THE OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCE
RESEARCH.
I'M VERY PLEASED TO INTRODUCE
OUR CAPSTONE SPEAKER DR. RAQUEL
HILL.
DR. HILL IS PROFESSOR AND CHAIR
OF THE COMPUTER AND INFORMATION
SCIENCES DEPARTMENT AT SPELMAN
COLLEGE.
PRIOR TO JOINING SPELMAN, DR.
HILL WAS A DIRECTOR OF COMPUTER
SCIENCE, CYBERSECURITY, IN THE
SCHOOL OF INFORMATICS AT INDIANA
UNIVERSITY IN BLOOMINGTON,
INDIANA.
SHE HAS BEEN AWARDED MILLIONS OF
DOLLARS IN COMMUNE SCIENCE
EDUCATION FROM VARIOUS AGENCIES
INCLUDING THE NATIONAL SCIENCE
FOUNDATION, HEWLETT, REBOOT
REPRESENTATION, TECH COALITION,
GOOGLE FOUNDATION AND OTHERS.
SHE IS SPELMAN'S PRINCIPLE
INVESTIGATOR FOR THE NSF
DISTRIBUTED CONFIDENTIAL
COMPUTING CENTER, CYBERPOLICY,
SIB SECURITY CLINIC AND COMPUTER
SCIENCE ACTIVITIES.
SHE HAS TRUST AND SECURITY IN
COMPETING ENVIRONMENTS AND DATA
PRIVACY.
SHE EARNED HER BS AND MS DEGREES
IN COMPUTER SCIENCE FROM THE
GEORGIA INSTITUTE OF TECHNOLOGY
AND PH.D. IN COMPUTER SCIENCE
FROM HARVARD UNIVERSITY.
>> HELLO, EVERYONE.
I APOLOGIZE FOR THE DELAY.
I ACTUALLY HAD A GLITCH IN THE
SOUND.
THANK YOU SO MUCH, LAURA, FOR
THAT INTRODUCTION.
I ACTUAL LY WANT TO THANK DR.
BARR.
IT IS AN HONOR TO BE THE
CAPSTONE SPEAKER TODAY.
WE CAN START WITH THE FIRST
SLIDE, PLEASE.
OKAY.
I LIKE STARTING WITH MY TITLE
BECAUSE I LIKE TO EXPLAIN WHAT
I'M THINKING ABOUT, WHEN I'M
THINKING ABOUT THE TITLE.
I WANTED TO GO ADVANCING DATA
INNOVATIONS FOR HEALTH
IMPROVEMENTS: POSSIBILITIES AND
PITFALLS AND I WANT TO TALK A
LITTLE BIT ABOUT MY BACKGROUND
WITH DATA.
I STARTED WORKING WITH DATA
WORKING WITH THE KINSE YKS
INSTITUTE ON HOW TO SECURE THEIR
DATA, WE WERE TALKING ABOUT HOW
TO ENSURE CONFIDENTIALITY OR THE
PROTECTION THAT ONLY AUTHORIZED
INDIVIDUALS CAN ACCESS DATA, BUT
WE WERE ALSO TALKING ABOUT WHAT
CAN YOU LEARN FROM THE DATA THAT
IS NOT PRESENT IN THE DATA.
DATA PRIVACY BECAME A BIG
CONCERN AND ISSUE AS I WAS
LOOKING AT THIS BIOMEDICAL DATA.
SO WHAT WE KNOW ABOUT DATA IS
THE MORE FEATURES YOU HAVE, THE
MORE LIKELY IT IS THAT YOU ARE
UNIQUE, YOU HAVE A UNIQUE
PROFILE WITHIN THOSE SET OF
FEATURES.
AND WE UNDERSTAND ANYTHING THAT
COULD MAKE YOU UNIQUE, COULD BE
LINKED TO EXTERNAL DATA TO
REIDENTIFY YOU OR PROVIDE
IDENTIFYING FEATURES EVEN IF
THESE FEATURES ARE NOT IN THE
DATA SET.
AS WE LOOK AT DATA INNOVATIONS
AND POSSIBILITIES, WHAT DOES
DATA ALLOW US TO DO?
WE ALSO HAVE TO LOOK AT
CHALLENGES LIKE NOT HAVING
ENOUGH DATA IN ORDER TO DO THE
ANALYSIS.
OR THE DATA LEAKING INFORMATION
THAT SHOULD NOT BE SHARED, AND
THAT IS THE DATA PRIVACY PIECE,
BUT ALSO DOING COMPUTATION IN A
CONFIDENTIAL MANNER.
NEXT SLIDE, PLEASE.
SO AS I WAS THINKING ABOUT THE
DATA INNOVATION, ONE OF THE
CHALLENGES THAT I HAD SPOKEN
WITH, WITH DR. BARR ARE HEALTH
DISPARITIES.
AND THE FIRST THING I THOUGHT
ABOUT IS, LIKE, HOW DO I
UNDERSTAND, YOU KNOW, WHERE
DISPARITIES ARE HAPPENING, WHO
IS IMPACTED BY THE DISPARITIES?
AND SO I KNEW FROM MY RESEARCH
ABOUT WHAT MY ZIP CODE CAN TELL
ABOUT ME AND OTHER THINGS LIKE
LINKING ME TO IDENTIFYING
INFORMATION, BUT I WANTED TO
UNDERSTAND WHAT MY ZIP CODE SAID
ABOUT ME AS IT RELATES TO MY
HEALTH.
SO I ACTUALLY CAME ACROSS SOME
RESEARCH THAT I WAS DOING THIS
WEBSITE THAT IS PROVIDED BY THE
ROBERT WOOD JOHNSON FOUNDATION
AND IT GAVE MY LIFE EXPECTANCY
BASED ON MY ZIP CODE.
SO I BEGAN THERE AND I WANTED TO
TAKE A LOOK AT, YOU KNOW, GIVEN
WHERE I'VE LIVED THROUGHOUT, YOU
KNOW, MY LIFE AND MY CAREER,
LIKE, WHAT WAS MY LIFE
EXPECTANCY?
AND, YOU KNOW, HOW DID IT CHANGE
BASED ON, YOU KNOW, MY ZIP CODE?
AND SO WE'RE GOING TO UNPACK
THAT A LITTLE BIT.
I WOULD LIKE TO START BY CON
CONTEXTUALIZING WHAT I SEE AS
THE PROBLEM AND I USE MYSELF AS
THE ACTUAL DATA SOURCE.
IF YOU TAKE A LOOK AT THE GRAPH,
THERE ARE THREE LINES.
THE BLUE LINE IS MY ZIP CODE
THROUGH ELEMENTARY SCHOOL, HIGH
SCHOOL, UNDERGRAD.
MY FIRST JOB, GRADUATE SCHOOL,
POST DOC AND MY FIRST JOB AS AN
ASSISTANT PROFESSOR.
YOU DON'T NEED TO KNOW THE ZIP
CODES.
BUT THAT IS THE CONTEXT OF WHAT
I WAS DOING AT THAT TIME.
THE ORANGE LINE IS THE AVERAGE
AND THE GREEN LINE IS THE LIFE
EXPECTANCY OF THE STATES I WAS
LIVING IN AT THE TIME.
ALL OF THIS IS IN CHRONOLOGICAL
ORDER FROM ELEMENTARY SCHOOL TO
ASSISTANT PROFESSOR.
I STARTED OUT IN ELEMENTARY
SCHOOL.
I'M FROM A RURAL TOWN AND THAT
GIVES YOU SOME IDEA ABOUT
POSSIBLY ABOUT WHAT IS GOING ON
IN THE RURAL TOWN WITH REGARDS
TO ACCESS TO HEALTH CARE, ACCESS
TO JOBS, EDUCATION, AND I HAVE A
FEW OF THOSE NUMBERS ON THE
LEFT-HAND SIDE OF THE SCREEN
HOPEFULLY IT'S MIRRORS SO MY
LEFT IS YOUR LEFT AND MY RIGHT
IS YOUR RIGHT.
BUT WE'LL SEE.
YOU WILL UNDERSTAND WITH WORDS
AND WHAT THE SLIDE IS TELLING
YOU.
SO MY LIFE EXPECTANCY IN MY
HOMETOWN, I THINK WAS ABOUT 71
YEARS.
AND SO I ACTUALLY CHANGED HIGH
SCHOOLS AND WAS IN A DIFFERENT
ZIP CODE, SO IT WENT UP TO ABOUT
73 YEARS.
BUT AS YOU SEE, AS WE PROGRESS
ALONG TO THE RIGHT, YOU KNOW, AS
I ENTERED GRADUATE SCHOOL THERE
WAS THE PEAK.
AND BECAUSE, YOU KNOW, I WENT TO
HARVARD FOR MY PH.D., I WAS IN
CAMBRIDGE, MASSACHUSETTS.
I THINK THE LIFE EXPECTANCY IN
THE ZIP CODE WAS ABOUT 81.
WHAT WE KNOW ABOUT MASSACHUSETTS
IS IT IS ABOVE THE AVERAGE AND,
YOU KNOW, THAT WAS THE PEAK.
AND SO AS WE LOOK AT SOME OF THE
NUMBERS TO -- THAT I HAVE HERE
ABOUT MY HOMETOWN IS THAT -- AND
I ACTUALLY MATCHED THE DATES
WITH THE DATE THAT THE ROBERT
WOOD JOHNSON INFORMATION IS
PROVIDED AND IT WAS BASED ON
2022.
UNEMPLOYMENT IN MY HOMETOWN WAS
5.2%, ABOVE THE NATIONAL AVERAGE
AND MY GRAD SCHOOL ZIP CODE.
THE HOUSEHOLD WAS 15%.
FOR MY GRAD SCHOOL IT WAS 12.1.
GRADUATION RATE WAS 84.3%, IN
THE U.S. IT WAS 87% IN MY GRAD
SCHOOL SIP CODE IT WAS 90.1%.
I HAD THOSE NUMBERS FROM AN
EARLIER PRESENTATION FROM 2014
WHEN THOSE NUMBERS WERE
DRASTICALLY LOWER, SIGNIFICANTLY
LOWER.
LIKE THE GRADUATION RATE WAS
55%.
IT KIND OF TELLS YOU A LITTLE
BIT ABOUT MY HIGH SCHOOL.
AND AS I WAS LOOKING AT THE
RESEARCH ON HEALTH DISPARITIES
AND HOW MEDICAL RESEARCHERS HAVE
BEEN TALKING ABOUT THAT, THEY
TALK ABOUT THE SOCIAL
DETERMINANTS OF HEALTH, HOW
BASICALLY THE ZIP CODE AND THE
SOCIAL DETERMINANTS OF HEALTH
DETERMINE THINGS LIKE LIFE
EXPECTANCY.
AND HOW YOUR ZIP CODE IS UP TO
6% OF YOUR HEALTH IS DETERMINED
SOLELY BY ZIP CODE, WHERE YOU
LIVE.
AND THERE ARE AGENTS IN YOUR
ENVIRONMENT THAT IMPACT YOUR
HEALTH, YOUR WELL BEING, YOUR
LIFESTYLE AND THINGS OF THAT
NATURE.
SO NEXT SLIDE, PLEASE.
AND SO THE HEALTHY PEOPLE 2020
TALKED ABOUT THE SOCIAL
DETERMINANTS OF HEALTH AND WHAT
THOSE ARE AND WHEN WE LOOK AT
IT, IF THE CONDITIONS IN THE
ENVIRONMENT IN WHICH PEOPLE ARE
BORN, THEY LIVE, THEY WORK, THEY
PLAY, THEY WORSHIP AND THEY AGE
AND THE EFFECT, YOU KNOW, THAT
THOSE THINGS HAVE ON YOUR
HEALTH.
AND SO THIS BECOMES IMPORTANT
BECAUSE IT'S NOT JUST ABOUT, YOU
KNOW, THE DATA THAT YOU WE ARE
COLLECTING.
IT IS NOT JUST ABOUT YOUR WEIGHT
OR YOUR ACTIVITY.
WHAT ARE THOSE THINGS THAT ARE
IMPACTING YOU?
DO YOU LIVE IN A FOOD DESERT?
WHERE IS THE NEAREST GROCERY
STORE?
DO YOU HAVE ACCESS TO FRESH
FOOD?
DO YOU HAVE ACCESS TO VIABLE
EMPLOYMENT THAT PROVIDES YOU
WITH A LIVING WAGE, THAT ENABLES
YOU TO SUPPORT YOU AND YOUR
FAMILY AND THE RESPONSIBILITIES
THAT YOU HAVE?
ALL OF THOSE THINGS IMPACT YOU.
SO AS WE LOOK AT, YOU KNOW,
ADVANCING DATA INNOVATIONS,
ESPECIALLY WHEN WE WANT TO TALK
ABOUT HOW DO WE ADDRESS HEALTH
DISPARITIES, WE CANNOT JUST LOOK
AT, YOU KNOW, TRADITIONAL THINGS
LIKE GENETICS AND WHETHER YOU
ARE PREDISPOSED FOR A PARTICULAR
DISORDER, BUT WE HAVE TO LOOK AT
YOUR ENVIRONMENT.
SO WE HAVE TO FIND WAYS TO
INTEGRATE THIS DATA ALONG WITH
OTHER MEDICAL AND
MEDICAL-RELATED DATA TO HAVE A
BETTER UNDERSTANDING OF HOW YOUR
ENVIRONMENT IMPACTS YOUR HEALTH
AND WHAT POLICIES NEED TO BE PUT
IN PLACE IN ORDER TO AFFECT
CHANGE AND CHANGE THOSE
DISPARITY NUMBERS.
SO WHEN IT CAME TO EDUCATION AND
HIGH SCHOOL GRADUATION AND SOME
OF THE OTHER NUMBERS THAT I
MENTIONED IN THE PREVIOUS SLIDE
FOR MY HOMETOWN, MY HOMETOWN WAS
ALWAYS BENEATH THE NATIONAL
AVERAGE AND THE AVERAGE FOR SOME
OF THE OTHER PLACES WHERE I'VE
LIVED A SIGNIFICANT AMOUNT OF
TIME OF MY LIFE.
OKAY.
NEXT SLIDE, PLEASE.
AND SO AS WE BEGIN TO TALK ABOUT
BIG DATA SCIENCE AND
UNDERSTANDING HEALTH
DISPARITIES, I TOOK A LOOK AT
SOME PARTICULAR RESEARCH
REGARDING WHAT WE SHOULD
ACTUALLY DO TO ENABLE THE
INNOVATION AS IT RELATES TO DATA
AND AFFECT CHANGE WITH HEALTH
DISPARITIES.
THIS RESEARCH SAYS WE NEED TO
INCORPORATE STANDARDIZED
INFORMATION ON DEMOGRAPHIC AND
SOCIAL DETERMINANTS OF HEALTH ON
ELECTRONIC HEALTH RECORDS.
THE GOAL IS TO IDENTIFY WAYS TO
IMPROVE QUALITY OF CARE FOR THE
MOST DISADVANTAGE POPULATIONS
OVER TIME.
BY DOING THIS AND INCORPORATING
THIS INFORMATION, WE CAN DO
ANALYSIS THAT INCLUDES THESE AS
FEATURES TO UNDERSTAND THE
IMPACT ON THE HEALTH OUTCOMES.
WE NEED TO BE ABLE TO LINK
GEOGRAPHIC VARIABLE AND SERMON
SERMON TO CLINICAL DATA AND
THESE HEALTH OUTCOMES.
THIS IS WHAT THESE DATA
INNOVATION CAN DO IF WE HAVE
ACCESS TO THE INFORMATION.
BUT WE ALSO NEED TO IDENTIFY THE
CAUSES OF THE HEALTH DISPARITIES
AND DEVELOP EFFECTIVE INT
INTERVEN
INTERVENTIONS.
WITHOUT THIS DATA WE WON'T BE
ABLE TO DO IT.
THE POSSIBILITIES ARE THERE.
IF WE ARE ABLE TO COLLECT THIS
DATA, STANDARDIZE IT AND LINK IT
TO THE HEALTH OUTCOMES, WE ARE
ABLE TO IDENTIFY THOSE HEALTH
DISPARITIES.
SO THOSE ARE ALL THE
POSSIBILITIES THAT ARE THERE.
WHAT ARE THE PITFALLS AND THE
THINGS WE HAVE TO ADDRESS IS
HOMOGENEOUS DATA.
SO DATA THAT BASICALLY LACKS
ROBUST INFORMATION ABOUT ALL
POPULATIONS.
DATA THAT DOES NOT INCLUDE SMALL
POPULATIONS.
AND SO SMALL POPULATIONS, THEY
ARE DEFINITELY CHALLENGING FOR
PRIVACY REASONS.
RESEARCHERS MAY NOT HAVE ACCESS
TO SIGNIFICANT NUMBERS OR
SUFFICIENT NUMBER OF INDIVIDUALS
WITHIN A PARTICULAR POPULATION.
SO THIS MAKES IT EXTREMELY
CHALLENGING TO DO ANY TYPE OF
ANALYSIS.
AND PROVIDE ANYTHING OTHER THAN
ANECDOTAL LIKE ASSESSMENT OF
THOSE INDIVIDUALS.
SO THIS IS WHERE DATA SHARING
AMONG ORGANIZATIONS BECOMES VERY
IMPORTANT, BUT FOR PRIVACY
REASONS AND CONFIDENTIALITY
REASONS, WE HAVE TO PROVIDE
MECHANISMS THAT ENABLE THAT
LEVEL OF SHARING IN A PRIVACY
PRESERVING AND CONFIDENTIAL
MANNER.
AND I WILL TALK ABOUT, YOU KNOW,
WORK THAT WE ARE DOING IN THE
CENTER FOR DISTRIBUTING
CONFIDENTIAL COMPUTES THAT CAN
ASSIST WITH THAT.
AND THEN THE LACK OF MECHANISMS
SO ENSURE PRIVACY AMONG SMALL
POP LEULA
POPULATIONS, THIS BECOMES
IMPORTANT BECAUSE AS I STATED AT
THE BEGINNING, ANYTHING THAT
MAKES YOU UNIQUE, CAN BE USED TO
LINK YOU TO IDENTIFYING
INFORMATION EVEN IF THOSE
IDENTIFIERS ARE NOT PRESENT IN
THE DATA.
AND SO NO MECHANISMS TO ENSURE
SECURE COMPUTATION THAT PROMOTE
WIDESPREAD DATA SHARING.
WE TALKED ABOUT THE IMPORTANCE
OF DATA SHARING BECAUSE OF THE
LACK OF DATA ON SMALL
POPULATIOPOPULA
POPULATIONS, IT WOULD BE
IMPORTANT FOR INDIVIDUALS OR
ORGANIZATIONS TO SHARE
INFORMATION.
HOW DO WE SHARE THIS OR DO
COMPUTATION ON THIS DATA THAT IS
OWNED BY DIFFERENT ENTITIES IN A
SECURE AND A PRIVACY-PRESERVING
WAY.
WHILE WE MAY NOT ACTUALLY
PHYSICALLY SHARE THE DATA, BUT
WE COULD BENEFIT FOR COMPUTATION
ON THIS DATA THAT IS OWNED BY
DIFFERENT ENTITIES.
OKAY?
AND SO IF WE ARE NOT ABLE TO DO
THOSE THINGS, THAT BECOMES THE
PITFALLS.
SO HERE I THINK WE ARE AT THE
NEXT SLIDE.
I THINK IF YOU PRESS DOWN AGAIN.
SO THE GRAND CHALLENGE IS HOW
CAN WE SHARE AND HOW CAN WE
PROTECT DATA AND USE AT SCALE?
SO ONE OF THE OBJECTIVES,
ESPECIALLY WE MAY HAVE DATA BUT
NOT A SUFFICIENT AMOUNT OF DATA
TO DO THE ANALYSIS WE WANT.
MULTIPLE ORGANIZATIONS MAY, IN
AN AGGREGATE, HAVE THE DATA THAT
IS NEEDED.
BUT WHAT CAN WE DO TO USE THIS
DATA ACROSS ORGANIZATIONS TO
FACILITATE THAT EASE OF USE
WITHOUT HAVING, YOU KNOW,
MULTIPLE IS USE AGREEMENTS AND
THINGS OF THAT NATURE.
SO THE WORK THAT -- THIS IS A
GRAND CHALLENGE FOR OUR CENTER
AND THIS IS WHAT I'M GOING TO
TALK ABOUT.
WE GIVE EXAMPLES FOR, YOU KNOW,
AUTOMOBILE ORGANIZATIONS,
BANKING, BUT ALSO HEALTH.
NEXT SLIDE, PLEASE.
AND SO THAT LAST LITTLE TAG
THERE IS LIKE HOW CAN WE USE THE
DATA WITHOUT, LIKE, ACTUALLY
EXPOSING OR SHARING THE DATA?
IS -- OKAY.
IF YOU CAN HIT NEXT, PLEASE.
SO AS THIS IS POPULATING,
BASICALLY WHAT WE ARE SEEING IS
LIKE DIFFERENT APPLICATIONS AT
THE TOP OF THIS DRAWING AND ONE
OF THOSE IS CONFIDENTIAL
PROGNOSIS.
SO IN ORDER TO ACTUALLY
DETERMINE A DISEASE PROGNOSIS, I
MAY NEED ADDITIONAL INFORMATION
THAT IS EXTERNAL TO MY
ORGANIZATION.
HOW DO I ACTUALLY ACCESS THIS
INFORMATION AND LEVERAGE IT IN
ANY ANALYSIS WITHOUT, YOU KNOW,
EXPOSING INFORMATION AND
PRESERVING PRIVACY ABOUT THE
INDIVIDUAL?
THERE'S CONFIDENTIAL DRUG
DEVELOPMENT.
AND THERE ARE OTHER APPLICATIONS
THAT, YOU KNOW, WE ARE LOOKING
AT.
AND SO IN THE MIDDLE, WHAT YOU
SEE IN THOSE TIERS THAT ARE
HOLDING UP THOSE APPLICATIONS,
IS WE NEED SOME LEVEL OF TRUST.
ONE OF MY RESEARCH AREAS IS
TRUST AND TRUST IN COMPUTING.
AND SO IN THIS, IN THE WORK THAT
WE ARE DOING, WE ARE NOT TALKING
ABOUT JUST SOCIAL TRUST.
SO SOCIAL TRUST IS I TRUST YOU
BECAUSE YOU REPRESENT A BRAND
AND THAT BRAND HAS SOME LEVEL OF
SOCIAL TRUST, RIGHT?
WHAT WE ARE LOOKING AT HERE WITH
REGARDS TO TRUST IS TRUST THAT
CAN BE PROVEN AND HARDENED TRUST
AND ITS IS ACTUALLY MORE OF A
PHYSICAL TRUST INSTEAD OF -- AND
A BEHAVIORAL TRUST.
WE WANT TO ENSURE THAT WHEN WE
WERE ACTUALLY DOING A
COMPUTATION ON DATA OR A DATA
ANALYSIS, THAT IS THE SOFTWARE
THAT HAS BEEN IMPLEMENTED DOES
EXACTLY WHAT IT SAYS IT DOES AND
THOSE ACTIONS OF THAT SOFTWARE
ARE ENFORCED BY A POLICY.
SO HERE WE ARE TALKING ABOUT
HARDENED BEHAVIORAL TRUST.
WE TRUST THE SOFTWARE BECAUSE IT
BEHAVES IN A CERTAIN WAY.
OTHER THAN SOCIAL TRUST, I TRUST
YOU BECAUSE YOUR BRAND IS
TRUSTWORTHY.
AND THAT TRUSTWORTHINESS MAY BE
BECAUSE YOU ARE THE MOST KNOWN
ENTITY IN THE SPACE.
BUT WE'RE DEALING MORE WITH THE
HARDENED TRUST, THE BEHAVIORAL
TRUST, THAT YOU ARE ABLE TO
PROVE THAT YOU ARE MEETING THE
REQUIREMENTS OF A SPECIFIC
POLICY.
AND SO THE NEXT TIER IS
CONFIDENTIAL OUTSOURCING.
I WANT TO BE ABLE TO DO
COMPUTATIONAL AND DATA, BUT ALL
OF THE ENTITIES DO NOT NEED TO
SHARE THE DATA WITH EACH OTHER,
BUT THE COMPUTATION -- THEY WILL
SHARE WITH HARDWARE THAT DOES
THE COMPUTATION AND THAT THE
RESULTS OF THE COMPUTATION WILL
BE SHARED, BUT THE ACTUAL DATA
WILL NOT BE SHARED BETWEEN THE
ENTITIES.
SO IF I HAVE MULTIPLE ENTITIES
THAT HAVE DATA AND THESE
ENTITIES CAN BENEFIT FROM
ANALYSIS ON THAT DATA, THEY
COULD SHARE THAT DATA WITH THE
CLOUD RESOURCE THAT'S DOING THE
COMPUTATION, BUT THAT DATA IS
NOT SHARED IN AN UNENCRYPTED WAY
OUTSIDE OF THAT COMPUTATIONAL
ENTITY.
I WILL DRILL DOWN A LITTLE BIT
LATER ABOUT THAT.
AND SO THE LAST TIER AND I
TALKED A LITTLE BIT ABOUT THAT
IS THE CONFIDENTIAL
COLLABORATION.
YOU SHARE YOUR INFORMATION, BUT
IT IS NOT WITH A COMPUTATIONAL
SOURCE.
AND LET'S SAY THAT IS A CLOUD
RESOURCE.
BUT IT IS NOT SHARED WITH THE
OTHER COLLABORATORS AND WHAT YOU
GET IS THE RESULT OF THAT.
AND THAT IS THE GOAL AND THE
OBJECTIVE OF THE WORK THAT WE'RE
DOING.
HOW IT RELATES BACK TO THE
PROBLEM OF, YOU KNOW, HOW DO WE
ENABLE DATA INNOVATION IS THAT
WITHOUT HAVING TRUSTED
COMPUTATION AND CONFIDENTIAL
OUTSOURCING TO USE EXTERNAL
RESOURCES WITH AND LIMITING WHAT
YOU SHARE WITH THOSE RESOURCES
AND THE CONFIDENTIAL
COLLABORATION, WE WILL NOT BE
ABLE TO DO THE DATA INNOVATION
OR REALIZE THE DATA INNOVATIONS
THAT ARE POSSIBLE WHEN WE ARE
ABLE TO SHARE RESOURCES IN A
CONFIDENTIAL AND PRIVATE WAY.
OKAY.
LET'S -- I'M ACTUALLY, I HAVE
ABOUT EIGHT MINUTES SO I'M GOING
TO HAVE TO SKIP A FEW THINGS AND
GET TO THE -- AND GET TO THE Q&A
PART OF THIS.
BUT I'M HOPING THAT I WAS ABLE
TO DRILL DOWN ENOUGH SO YOU SEE
THE CONNECTION AND THE NEED FOR,
YOU KNOW, I WILL SAY
CONFIDENTIAL COMPUTING, A
CONFIDENTIAL COMPUTING
INFRASTRUCTURE TO ENABLE DATA
INNOVATION THAT WILL ALLOW US TO
ADDRESS SOME OF THE HEALTH
DISPARITIES.
AND SO I HAVE SAID A LITTLE BIT
ABOUT THIS.
THIS IS A PRETTY BUSY PICTURE
HERE.
IT TALKS ABOUT THE SPECIFIC
THRUST OF THE CENTERS.
SO IF YOU LOOK AT THE LOWER PART
BENEATH THE BOXES WHERE YOU HAVE
THE PROGRAM CERTIFICATION,
PROGRAM CERTIFICATION IS
IMPORTANT.
THAT'S THE INSURANCE THAT -- OR
THE ASSURANCE THAT THE SOFTWARE
THAT IS GOING TO DO THE ANALYSIS
IS GOING TO MEET THE POLICY.
AND THOSE POLICIES ARE DECIDED
BY, FOR EXAMPLE, ORGANIZATIONS
THAT COULD BENEFIT FOR THE
ANALYSIS OF DATA, THE DATA
AGGREGATE, NOT JUST ONLY DATA
THAT THEY OWN, BUT DATA THAT IS
OWNED BY OTHER ORGANIZATIONS.
AND SO THEIR SPECIFIC POLICIES
LIKE WHAT INFORMATION CAN BE
SHARED?
WHAT INFORMATION LOSS COULD
THOSE ORGANIZATIONS SUPPORT?
WHEN I SAY LOSS, LIKE, WHAT MAY
BE LEARNED THAT WOULD LIMIT THE
PRIVACY OF THE INDIVIDUALS IN
THE DATA SET, RIGHT?
SO HOW MUCH RISK ARE THEY ABLE
TO TAKE ON?
SO YOU HAVE THESE ASSURANCE
NOTES THAT'S GOING TO BE DOING
THE CHECKING AND THEN THERE IS
THE WORK FLOW.
AND SO I'LL TAKE A MOMENT JUST
TO TALK ABOUT, LIKE, I TALKED
ABOUT THIS CONFIDENTIAL
COMPUTING AND HOW CAN WE REALIZE
THAT?
THE TECHNOLOGY IS THERE NOW.
IT HAS EVOLVED OVER TIME.
AND SO WHAT YOU HAVE IS THE
ABILITY AT THIS POINT WHERE YOUR
CENTRAL PROCESSING UNIT CAN
SECTION OFF MEMORY, GIVE USER
LEVEL APPLICATIONS AND THE
OPERATING SYSTEM THE ABILITY TO
ACTUALLY SET UP THESE PROTECTIVE
MEMORY AREAS WITHIN YOUR RANDOM
ACCESS MEMORY, RAM, THAT ARE
CALLED ENCLAVES.
AND SO EVEN A USER PROGRAM'S
ENCLAVE CANNOT BE ACCESSED BY
THE OPERATING SYSTEM.
I MAY HAVE COMPUTER SCIENTISTS
IN THE ROOM WHO ARE NOT FAMILIAR
WITH TRUSTING COMPUTING OR
CONFIDENTIAL COMPUTING.
THIS IS AN INNOVATION THAT HAS
HAPPENED OVER YEARS.
IT BEGAN WITH CRYPTOGRAPHIC
CO-PROCESSERS, THAT IS A
SEPARATE PROCESSER THAT IS IN
ITS OWN ENCASING THAT IS AN
ADAPTER THAT IS ADDED TO YOUR
COMPUTER, BUT WITH THE
CRYPTOGRAPHIC CO-PROCESSERS,
THEY WERE BUILT BY IBM.
THEY WERE LIMITED IN
FUNCTIONALITY.
WE NEEDED A MORE GENERAL PURPOSE
FRAMEWORK TO DO THE DATA
ANALYSIS AND COMPUTATION HERE
BECAUSE THE ANALYSIS WE WANT TO
DO MAY BE EVER CHANGING.
SO WE NEED TO BE ABLE TO DO THIS
WITHOUT SIGNIFICANT OVERHEAD OF
THE USE OF A CRYPTOGRAPHIC
CO-PROCESSER AND THE SOFTWARE ON
THE ADAPTER.
THERE IS NEW TECHNOLOGY WITH
INTEL THAT ALLOW US TO CREATE
DATA ENCLAVES WHERE DATA IS
ENCRYPTED AND NO ENTITY RUNNING
ON THE COMPUTER, NO OTHER
SOFTWARE CAN ACCESS IT OTHER
THAN THE SOFTWARE THAT IS
RUNNING AND SET UP THAT
PROTECTIVE ZONE.
AND SO IT IS IMPORTANT TO KIND
OF UNDERSTAND, LIKE, HOW THIS
SHARING CAN ACTUALLY HAPPEN
WHEN -- AND THAT THE TECHNOLOGY
EXISTS NOW AND WHAT WE ARE DOING
AT THE CENTER FOR DISTRIBUTIVE
AND CONFIDENTIAL COMPUTING IS
BUILDING OUT THE INFRASTRUCTURE
THAT WILL ENABLE US TO SUPPORT
POLICIES THAT ARE DEFINED BY
ORGANIZATIONS AND CERTIFY CODE
TO ENSURE THAT THE CODE IS GOING
TO DO WHAT IT SAYS THAT IT WILL
DO AND IT MEETS THE REQUIREMENTS
OF THOSE POLICIES.
SO I HAVE ABOUT THREE MINUTES.
LET'S GO TO THE NEXT SLIDE,
PLEASE.
OKAY.
SO WITH THE CONFIDENTIAL DISEASE
PROGNOSIS, THIS PARTICULAR SLIDE
JUST TELLS YOU THE THINGS WE ARE
WORKING ON LIKE WITH REGARDS TO
HOW CAN ENFORCEABLE POLICIES OF
USE OF PATIENT DATA BE SPECIFIED
TO MEET THE REQUIREMENTS, FOR
EXAMPLE, OF THE HOSPITAL?
HOW CAN THIRD PARTY PROGNOSIS
PROGRAMS BE TRUSTED TO
FAITHFULLY ENFORCE THE DATA-USE
POLICIES?
AND HOW CAN THE WHOLE PROGNOSIS
WORKFLOW OFFER ADEQUATE DATA
PROTECTION AND RUNTIME?
AND HOW CAN WE MAKE THIS USER
FRIENDLY?
SO THOSE ARE THE THINGS WE ARE
WORKING ON RIGHT NOW.
NEXT SLIDE, PLEASE. DATA
FLOWING IN FROM IO T, YOU HAVE
GENOMIC DATA.
YOU HAVE SOME ADDITIONAL
APPLICATIONS THAT MAY BE COMING
FROM A TAP STORE, BUT THIS
ANALYSIS IS BEING DONE IN A
CLOUD COMPUTING ENVIRONMENT THAT
HAS A TRUSTED EXECUTION
ENVIRONMENT AND NONE OF THIS
DATA WILL BE AVAILABLE OUTSIDE
OF THAT MEMORY ENCLAVE AND WHAT
YOU GET IS THE DISEASE PROGNOSIS
THAT MAY BE SENT TO THE HOSPITAL
AND INSURANCE COMPANY, BUT
WITHOUT THAT DATA BEING SHARED
WITH THESE EXTERNAL ENTITIES.
NEXT SLIDE, PLEASE.
ANOTHER PARTICULAR USE CASE IS
FINE TUNING LARGE LANGUAGE
MODELS FOR USE HOSPITAL DATA TO
PRODUCE THIS CLINICAL SUMMARY.
WITHOUT THAT INFORMATION BEING
EXPOSED OUTSIDE OF THAT TRUSTED
EXECUTION ENVIRONMENT.
I'M GOING TO STOP HERE BECAUSE I
HAVE A MINUTE LEFT.
IF WE CAN GO TO THE THANK YOU
SLIDE.
I HAVE A SLIDE WHERE I HAVE A
LIST OF REFERENCES THAT I USE
FOR THE HEALTH DISPARITIES
RESEARCH.
BUT THIS IS NOT WORK THAT IS --
MISSED A SLIDE.
IF YOU CAN GO BACK UP, PLEASE,
TO JUST THE -- I THINK I SAID TO
THE THANK YOU SLIDE.
THE SLIDE WHERE I LIST THE
COLLABORATING INSTITUTIONS.
OKAY.
THE NEXT SLIDE, PLEASE.
THERE.
OKAY.
I DON'T HAVE ALL THE NAMES OF
THE PIs ON THIS PROJECT, BUT
THIS IS WORK, IT IS BEING LED BY
RESEARCHERS AT INDIANA
UNIVERSITY, CARNEGIE MELON,
DUKE, OHIO STATE, PENN STATE,
PURDUE AND YALE.
THIS IS ONGOING WORK AND WE
REALLY LOOK FOR OPPORTUNITIES TO
COLLABORATE ESPECIALLY WITHIN
THE MEDICAL DOMAIN.
WE ARE ACTIVELY WORKING WITH IU
MEDICAL ON CURRENT USE CASES AND
WE LOOK FOR OPPORTUNITIES TO
COLLABORATE WITH OTHERS AND I'M
GOING TO STOP HERE BECAUSE I'M
ONE MINUTE OVER AND I LOOK
FORWARD TO YOUR QUESTIONS.
>> GREAT, THANK YOU SO MUCH, DR.
HILL, FOR THAT VERY ENGAGING AND
IMPORTANT TALK.
MY NAME IS DINA PALTOO.
I AM THE ACTING DEPUTY DIRECTOR
OOF POLICY AND EXTERNAL AFFAIRS
AT THE NATIONAL LIBRARY OF
MEDICINE AT NIH.
I'M GOING TO BE MODERATING A FEW
QUESTIONS FROM OUR AUDIENCE.
I'D LIKE TO REMIND PARTICIPANTS
THAT IF YOU DO HAVE A QUESTION
FOR THIS Q&A SESSION TO PUT THAT
IN THE SEND LIVE FEEDBACK BUTTON
ON THE SCREEN.
SO WE DO HAVE OUR FIRST
QUESTION, WHICH WE'D REALLY LIKE
TO HEAR FROM YOU REGARDING SOME
OF THESE PARTNERSHIPS AND HOW TO
DEVELOP AND LEVERAGE
PARTNERSHIPS BETWEEN
ORGANIZATIONS THAT HAVEN'T
HISTORICALLY COLLABORATED
TOGETHER ON HEALTH RESEARCH.
>> I THINK THAT'S A GOOD
QUESTION.
I THINK ONE OF THE THINGS THAT,
YOU KNOW, MAKES FOR A GOOD
COLLABORATION IS RELATIONSHIP.
RIGHT?
AND SOMETIMES THOSE
RELATIONSHIPS ARE, YOU KNOW,
HARD TO INITIATE.
I THINK WHAT MADE THIS IS A GOOD
COLLABORATION FOR ME WHILE I'M
AT SPELMAN IS THAT MY
COLLEAGUES, I HAVE WORKED WITH
MY COLLEAGUES AT INDIANA
UNIVERSITY FOR 14 YEARS AND I
ALSO HAD COLLEAGUES AND HAD
COLLABORATED PREVIOUSLY WITH
PROFESSORS AT PURDUE.
I HAD RELATIONSHIPS, PROBABLY
WITH THE PROFESSOR FROM DUKE.
AND SO I THINK IT'S ALL ABOUT
THE RELATIONSHIP AND I THINK
ALSO YOU HAVE TO HAVE A MINDSET
WHERE YOU UNDERSTAND THAT A
PROBLEM -- YOU CANNOT EXPLORE A
PROBLEM IN THE VACUUM AND YOU
NEED TO TAKE A MULTIDISCIPLINARY
APPROACH TO PROBLEM SOLVING.
EVEN AS I PREPARE TO GIVE THIS
CONVERSATION AND THIS
PRESENTATION TO A MEDICAL
OFFICE, I NEEDED TO UNDERSTAND
WHAT WAS THE MEDICAL RESEARCH
SAYING?
AND BASICALLY WHAT THE MEDICAL
RESEARCH WAS SAYING IS THAT WE
NEED DATA.
YOU KNOW, AND THERE'S DATA THAT
WE ARE LEAVING OUT.
AND THAT IT IS IMPORTANT FOR US
TO HAVE THIS DATA AND IF WE
DON'T HAVE THIS DATA, WE WILL
NOT BE ABLE TO MAKE ADVANCES
TOWARDS REDUCING THOSE HEALTH
DISPARITIES.
SO I THINK YOU HAVE TO TAKE A
MULTIDISCIPLINARY APPROACH.
YOU HAVE TO BUILD RELATIONSHIP
AND THAT'S HOW THIS TYPE OF WORK
GETS DONE.
>> GREAT.
THANK YOU SO MUCH.
ANOTHER QUESTION, WOULD YOU BE
ABLE TO ELABORATE ON THE
TENSIONS BETWEEN PRIVACY AND
DATA ACCESS?
>> YES.
DEFINITELY THERE IS A LOT OF
TENSION THERE.
AND THAT IS WHY HAVING AN
INFRASTRUCTURE THAT ALLOWS
COMPUTATIONAL DATA IN A
CONFIDENTIAL MANNER BECOMES
VERY, VERY IMPORTANT.
BECAUSE WITH REGARDS TO THE DATA
SHARING, PEOPLE HAVE ACTUALLY
PUT A LOT OF TIME AND EFFORT AND
MONEY INTO ACTUALLY COLLECTING
AND MANAGING THEIR DATA.
THEY HAVE ESTABLISHED AGREEMENTS
WITH PARTICIPANTS THAT THEY WILL
PRESERVE THE PRIVACY OF THOSE
RECORDS AND SO THIS IS THE
TENSION THERE.
AND ALSO WHEN YOU GO BEYOND
THINGS LIKE THE GREATER GOOD OF,
YOU KNOW, MEDICAL RESEARCH AND
YOU HAVE COMPANIES AND
ORGANIZATIONS, FOR EXAMPLE, WHO
HAVE PROPRIETARY INFORMATION,
THEY MAY BENEFIT FROM, YOU KNOW,
UNDERSTANDING THE PATTERNS FOR,
YOU KNOW, EXAMPLE THEFT.
IF WE LOOK AT PHARMACIES, FOR
EXAMPLE.
WHERE THERE MAY BE THEFT GOING
ON IN PHARMACEUTICAL ENTITIES
LIKE THE DRUGSTORES AND
EVERYTHING LIKE THAT.
IF THESE FARMERS ACTUALLY SHARED
INFORMATION, THEY COULD PROBABLY
IDENTIFY CULPRITS MORE QUICKLY.
THERE IS A CONCERN BY DOING THIS
SHARING, THEY ARE MAKING
THEMSELVES VULNERABLE AND IT
COULD NEGATIVELY IMPACT THEM.
SO HOW DO WE ADDRESS AND
MINIMIZE THAT RISK?
WHAT IF YOU COULD BENEFIT FROM
THE COMPUTATION OF AGGREGATED
DATA ACROSS PHARMACIES, BUT THE
OTHER PHARMACIES NEVER GET
ACCESS TO YOUR DATA?
SO THIS IS WHAT WE ARE TRYING TO
PROVIDE.
IF YOU CAN'T REDUCE THE RISK FOR
THOSE ENTITIES, THERE IS THAT
ISSUE OF, HEY, HOW DO I PROTECT
MYSELF AND WILL THIS -- IS THE
RISK TOO HIGH IN ORDER TO ENGAGE
IN THAT MANNER?
IF WE CAN LOWER THAT RISK FOR
ENTITIES, THEN YOU COULD HAVE
MORE COMPUTATION ON THE
AGGREGATE OF THE DATA.
WE COULD HAVE A CONFIDENTIAL
COLLABORATION THAT I TALKED
ABOUT EARLIER.
>> GREAT.
THANK YOU.
AND ANOTHER QUESTION.
HOW CAN WE IMPROVE DATA LITERACY
AMONG BIOMEDICAL RESEARCHERS TO
ENSURE EFFECTIVE INTEGRATION OF
DATA, SCIENCE, AND WOMEN'S
HEALTH RESEARCH?
>> I THINK, I MEAN, THIS IS AN
INTERESTING -- THIS IS A VERY
INTERESTING QUESTION.
AND I THINK, YOU KNOW, I THINK
SPELMAN TAKES A GOOD APPROACH AT
THIS.
EVERY STUDENT ON SPELMAN'S
CAMPUS, REGARDLESS IF THEY ARE
STEM OR NON-STEM, THEY HAVE A
DATA LITERACY REQUIREMENT.
I MEAN, A DIGITAL LITERACY
REQUIREMENT.
WE ARE EVOLVING THE CURRICULUM
TO ENSURE THAT DIGITAL LITERACY
INVOLVES DATA LITERACY ALSO.
SO EVEN FOR OUR NON-STEM
SKROERS, WHICH HAVE A DIGITAL
LITERACY COMPONENT, WE HAVE
INCORPORATED DATA SCIENCE INTO
THAT INTRODUCTORY COURSE SO
STUDENTS MEET THE LEARNING
OBJECTIVE OF BEING ABLE TO TELL
A STORY WITH THEIR DATA.
NON-STEM MAJORS ARE USING PYTHON
PROGRAMMING.
WE HAVE INCORPORATED PART OF
BERKELEY'S DATA 8 MODULE INTO
THAT COURSE AND WE HAVE MET THE
STUDENTS WHERE THEY ARE SO THAT
THEY CAN UNDERSTAND AND WALK
AWAY WITH TANGIBLE SKILLS.
SO I THINK THAT THE IMPORTANT
PART IN THAT STORY IS MEETING
THE STUDENTS WHERE THEY ARE.
THOSE STUDENTS, THEY DON'T HAVE
TO LEARN EVERYTHING ABOUT PYTHON
PROGRAMMING, BUT WE CAN PROVIDE
THEM WITH A SUFFICIENT
FOUNDATION THAT THEY CAN WALK
AWAY FROM ONE COURSE WITH THIS
MODULE IN IT AND BE ABLE TO TELL
A STORY WITH DATA.
AND I THINK THAT'S THE IMPORTANT
PART OF THAT.
>> THANK YOU.
HAVE YOU FOUND THAT ANY STUDENTS
HAVE GONE INTO THE FIELD OF DATA
AFTER TAKING THE DATA LITERACY
COURSES?
>> AND THE INTERESTING THING IS,
I HAVE FOUND THAT I HAVE HAD
STUDENTS WHO WERE NON-STEM
MAJORS WHO TOOK THE DIGITAL
LITERACY COURSE FOR NON-STEM
MAJORS AND CHANGED THEIR MAJOR.
THEY CHANGE THEIR MAJOR TO
COMPUTER SCIENCE AND THEY WANTED
TO FOCUS MORE ON THE ANALYTICS
PART AND ALGORITHMIC THINKING
PART OF THEIR EDUCATION OR THEY
DECIDED TO MINOR, YOU KNOW, IN
COMPUTER SCIENCE.
AND SO WE ALSO HAVE A DATA
SCIENCE MINOR HERE AT SPELMAN.
IT IS SOMETHING THAT STUDENTS
ARE REALLY DEVELOPING INTEREST
IN.
WE ARE BUILDING OUT THAT
CURRICULUM AND SO I EXPECT TO
SEE MORE OF THAT ACROSS THE
CAMPUS.
AND NOT JUST, YOU KNOW, IN
COMPUTER SCIENCE.
>> GREAT.
THANK YOU.
ANOTHER QUESTION.
SO WE'D LIKE TO -- THE PERSON
ASKING THE QUESTION WANTS TO
THANK YOU FOR YOUR WORK AND
ENLIGHTNING TALK.
THE QUESTION IS, TO WHAT EXTENT
ARE FEDERALLY MANAGED DATA
ENCLAVES, THE ONES YOU
DESCRIBED, CONNECTING WITH
STATEWIDE IDENTIFIABLE
STAKEHOLDERS?
>> THAT IS A QUESTION THAT I
DON'T KNOW THE ANSWER TO.
WITH REGARDS TO THE FEDERAL
MANAGED DATA ENCLAVES AND
CONNECTING WITH THE STATE.
I KNOW THAT IN INDIANA, I WORKED
AT INDIANA FOR 14 YEARS.
THERE WAS A STRONG RELATIONSHIP,
YOU KNOW, WITHIN THE STATE AND
WITH THE DATA HELD BY THE STATE,
BUT I DON'T KNOW THE
RELATIONSHIP BETWEEN THE STATE
AND THE FEDERAL.
I KNOW THAT THERE WERE WORKING
RELATIONSHIPS THAT WE HAVE AT
INDIANA UNIVERSITY, YOU KNOW,
WITH THE STATE DATA HOLDERS AND
BEING ABLE TO ACCESS DATA AND
THINGS OF THAT NATURE.
AS IT GOES TO THE FEDERAL LEVEL,
I'M NOT SURE.
>> YEAH.
MAKES SENSE.
I KNOW ONE OF THE THE SLIDES
THAT YOU SKIPPED OVER WAS A
LARGE LANGUAGE MODEL USE CASE.
SO WE WERE WONDERING IF YOU HAVE
ANY THOUGHTS OR INFO THAT YOU'D
LIKE TO SHARE ON LLMs OR AI?
>> OKAY.
SO LET'S WITH REGARDS TO THE
LARGE LANGUAGE MODEL AND I THINK
IT HAD SOMETHING TO DO WITH THAT
PARTICULAR SLIDE.
I HAVE IT OPEN ON MY SCREEN SO I
WILL TAKE A LOOK AT THAT
PARTICULAR SLIDE SO I CAN SEE
WHAT THAT PARTICULAR USE CASE.
SO I THINK IT WAS SAYING
CLINICAL SUMMARY GENERATION.
AND SO, OKAY.
THAT GETS ME BACK TO THE
INFORMATION PRODUCED BY THE
LARGE LANGUAGE MODEL DEPENDS ON
THE QUALITY OF THE TRAINING
DATA.
SO THERE CAN BE INFORMATION THAT
THE MODEL WAS TRAINED ON THAT
MAY BE INACCURATE.
SO LET'S SAY YOU PUT IN A LOT OF
RESEARCH DATA AND MAYBE SOME
RESEARCH DATA, FOR EXAMPLE, FROM
SOME STUDY IT HAS BEEN LATER
DISCOUNTED, BUT SOMEHOW IT GOT
IN THE MODEL.
YOU MAY QUERY THAT MODEL AND
SOME OF THE RESULTS MAY BE BASED
ON SOME STUDY THAT IT HAS NOW
BEEN DETERMINED THE RESULTS WERE
NOT ACCURATE.
BUT IT'S THERE.
SO WHAT I WAS SAYING ABOUT THE
LARGE LANGUAGE MODEL IS THAT,
YOU KNOW, YOU CAN'T REPLACE THE
HUMAN WITH THE LARGE LANGUAGE
MODEL.
THAT THERE NEEDS TO BE, YOU
KNOW, HUMAN OVERSIGHT.
THE HUMAN HAS TO ALWAYS REMAIN
IN THE LOOP, RIGHT?
IT DOES NOT REPLACE THE
DEVELOPMENT OF FOUNDATIONAL
SKILLS AND KNOWLEDGE.
AND SO YOU NEED THOSE
FOUNDATIONAL SKILLS AND
KNOWLEDGE TO BE ABLE TO ASSESS
THE ACCURACY AND THE
TRUTHFULNESS OF WHAT IS BEING
PRODUCED BY THOSE MODELS.
IF YOU DON'T HAVE THAT
FOUNDATIONAL KNOWLEDGE, THEN YOU
ARE VULNERABLE TO BELIEVING
EVERYTHING THAT IS PRODUCED AND
UNDERSTAND THAT, YOU KNOW, THERE
CAN BE INAK -- INACCURACIES IN
THE TRAINING DATA.
YOU WILL NOT BE ABLE TO IDENTIFY
AND ASSESS AND UNDERSTAND HOW TO
USE THAT INFORMATION.
>> MAKES COMPLETE SENSE.
WE ALSO WANTED TO GO BACK.
YOU MENTIONED EARLIER IN YOUR
PRESENTATION ABOUT TRUST.
HOW DO YOU FEEL DATA SCIENTISTS
CAN ENGAGE THE TRUST OF THE
PUBLIC IN USING SOME OF THESE
TOOLS AND METHODS AND
APPLICATIONS?
IS
>> I THINK THAT -- AND WHEN YOU
ARE TALKING ABOUT THE TOOLS, ARE
YOU TALKING ABOUT THE TOOLS OF A
TRUSTED COMPUTING INFRASTRUCTURE
OR ARE YOU TALKING ABOUT JUST
DATA ANALYSIS AND CONVINCING AN
INDIVIDUAL TO BE A PART OF THE
STUDY?
>> THE FORMER.
OKAY.
THE FORMER.
SO ONE OF THE THINGS WE ARE
LOOKING AT AS A PART OF THIS
RESEARCH WE ARE DOING IS THE
PUBLIC'S PERCEPTION ON WHAT IS
TRUSTED AND TRUSTWORTHY.
AND WHAT WE ARE FINDING IS THAT,
YOU KNOW, IT IS NOT SO IMPORTANT
THAT THEY UNDERSTAND ALL OF THE
DETAILS OF HOW THIS WORKS.
BUT THEY NEED TO HAVE, YOU KNOW,
SOME BASIC UNDERSTANDING OF WHAT
IS POSSIBLE AND WHAT IS NOT
POSSIBLE AND WHERE THE RISKS ARE
WITH REGARD TO THE USE.
AND SO I THINK THAT, YOU KNOW,
WITH THAT LEVEL OF EXPLANATION
THEN INDIVIDUALS WILL BE ABLE TO
UNDERSTAND THAT, YOU KNOW, THIS
IS TRUSTWORTHY.
BECAUSE WHEN I TALK ABOUT A
TRUSTED EXECUTION ENVIRONMENT
AND THE FACT THAT WITH CERTAIN
TECHNIQUES, EVEN THE OPERATING
SYSTEM AND I'M JUST GOING TO GO
INTO TEACHER MODE FOR JUST ONE
SECOND.
THE OPERATING SYSTEM BASICALLY
MANAGES ALL RESOURCES ON YOUR
COMPUTER.
RIGHT?
I'M TALKING ABOUT ACCESS TO ALL
HARDWARE AND EVERYTHING ELSE.
SO WHEN I TELL YOU THAT THERE IS
A CENTRAL PROCESSING UNIT, A
COMPONENT OF HARDWARE THAT THE
OPERATING SYSTEM WILL MANAGE
ACCESS TO, CAN PREVENT THE
OPERATING SYSTEM FROM ACCESSING
DATA IN AN UNENCRYPTED STATE.
THAT SPEAKS VOLUMES ABOUT HOW
THE TECHNOLOGY HAS EVOLVED TO
GIVE US A GENERAL PURPOSE
PLATFORM FOR DOING TRUSTED
COMPUTATION.
AND LIKE I SAID, YOU KNOW, WHEN
I STARTED LOOKING AT TRUSTED
COMPUTING BACK IN 2025, AND I
HAD A COLLABORATION WITH IBM AND
HAD SEVERAL CRYPTOGRAPHIC
CO-PROCESSORS, THESE WERE
SEPARATE ADAPTER CARDS THAT FIT
INTO THE MOTHER BOARD OF A
COMPUTER.
AND THEY DID THEIR COMPUTATION
WITHIN THAT ADAPTER.
THE ADAPTER WAS PROTECTED.
IT HAD A METAL PLATING AND IT
ALSO HAD INK IN THE -- AN INK
LAYER SO IF YOU TRIED TO TAMPER
WITH IT AND REMOVE THE CASING
AND GET ACCESS TO THE
CRYPTOGRAPH IC KEYS, IT WILL
SELF-DESTRUCT AND WILL OVERWRITE
ALL THE KEYS.
NO ONE CAN GET ACCESS BECAUSE
YOU WERE PHYSICALLY TRYING TO
TAMPER.
WHAT INDUSTRY HAS DONE HAS
EVOLVED THAT CRYPTOGRAPHIC
CO-PROCESSOR AND MOVED THE
FUNCTIONALITY UP A LEVEL.
YOU DON'T HAVE THE OVERRIDING OF
KEYS, BUT YOU, THE OPERATING
SYSTEM IS NOT ABLE TO EVEN
ACCESS IT.
SO OTHER USER APPLICATIONS WON'T
BE ABLE TO ACCESS THAT DATA IN
AN UNPROTECTED, UNENCRYPTED
STATE.
THESE ARE THE THINGS IF WE ARE
EFFECTIVE IN THE WAY WE
COMMUNICATE TO INDIVIDUALS AND
NOT OVERLOAD THEM WITH
INFORMATION SO THEY UNDERSTAND
AT THAT LEVEL, YOU KNOW, THE
LEVEL OF PROTECTION, I THINK
THAT IS POSSIBLE.
BUT IT IS GOING TO TAKE SOMEONE
WHO WORKS WITH HOW YOU PRESENT
INFORMATION IN THE MOST
EFFECTIVE AND EFFICIENT WAY TO
ACTUALLY DO THAT.
YOU KNOW, YOU HAVE TO BE WORKING
IN THIS SPACE OF HUMAN CENTERED
COMPUTING IN ORDER TO CONVEY
THIS IN A WAY THAT INDIVIDUALS
UNDERSTAND.
>> GREAT.
KIND OF A FOLLOW UP TO THAT
QUESTION.
WE HAVE ONE MORE QUESTION THAT'S
COME IN BEFORE WE TAKE OUR
BREAK.
WHAT DO YOU THINK THE GENERAL
PUBLIC MISUNDERSTANDS ABOUT
ACTION -- AI.
HOW WOULD YOU HAVE THEM DO THAT
IF THEY ARE NOT COMPUTER
SCIENTISTS?
>> ONE THING THEY MISUNDERSTAND
IS AI IS ALL KNOWING.
DEFINITELY OUR STUDENTS AND I
THINK THAT INDIVIDUALS, YOU
KNOW, WHO ARE NOT STUDENTS THINK
THAT AI IS ALL KNOWING.
AI, WHAT IS ACTUALLY GENERATED
IS BASICALLY DATA THAT IS
DETERMINED FROM RELATIONSHIPS
BETWEEN THE FEATURES THAT COME
FROM THE DATA, RIGHT?
AS I SAID, IF THE DATA IS
INACCURATE WHAT YOU ARE GOING TO
GET IS INACCURATE INFORMATION.
AND I THINK THAT IS THE CASE.
ALSO, YOU KNOW, AT THIS POINT I
THINK THAT -- ESPECIALLY
STUDENTS THINK THAT AI CAN SOLVE
ANY PROBLEM THEY ARE GIVEN IN AN
ASSIGNMENT.
AND THEY MAY THINK IT IS NOT
NECESSARY TO BUILD THE SKILL.
I CAN JUST QUERY IT.
I CAN QUERY A LARGE LANGUAGE
MODEL FOR THAT INFORMATION AND
I'M DONE.
AND SO WHAT WE ARE TEACHING OUR
STUDENTS IS THAT, OKAY, AS
THERE'S AN IMPORTANCE FOR
SCAFFOLDING SKILLS FOR YOU AND
FOR YOU TO HAVE THIS
FOUNDATIONAL UNDERSTANDING.
ONCE WE GIVE YOU A VERY COMPLEX
PROBLEM YOU CAN GOING TO SEE THE
LIMITS AND BOUNDARIES OF WHAT
OUR CURRENT LARGE LANGUAGE
MODELS CAN DO.
I CAN PUT THIS IN THE CONTEXT OF
BUILDING OUT AN APPLICATION
BECAUSE I'M A COMPUTER SCIENTIST
AND I TEACH A LOT OF STUDENTS.
WHEN YOU ARE BUILDING OUT AN
APPLICATION, THERE CAN BE
MULTIPLE COMPONENTS.
IF I GIVE YOU A COMPLEX PROBLEM
WHAT YOU GET FROM THE LARGE
LANGUAGE MODEL IS GOING TO BE
SOMETHING INCOMPLETE, IT COULD
BE INACCURATE.
AND WHY I KNOW IT COULD BE
FILLED WITH BUGS.
WHY DO I KNOW THIS?
FOR EVERY 10 LINES OF CODE
WRITTEN BY A SOFTWARE DEVELOPER
THERE IS AT LEAST ONE BUG IN THE
CODE.
SO AS WE'RE TRAINING OUR LARGE
LANGUAGE MODEL ON THESE
DIFFERENT APPLICATIONS, GUESS
WHAT?
IT IS GOING TO BE FILLED WITH
BUGS.
SO OUR STUDENTS NEED THE SKILLS
IN ORDER TO BE ABLE TO
DETERMINE, LIKE, WHAT IS THE
ISSUE HERE?
WHAT IS THE CHALLENGE?
AND I HAVE MAYBE A PORTION OF
THE SOLUTION.
NOW WHAT ELSE DO I NEED IN ORDER
TO BUILD OUT A COMPLETE
SOLUTION?
AND RIGHT NOW AI CAN'T DO THAT
FOR US.
>> GREAT.
THANK YOU SO MUCH.
AND THANK YOU SO MUCH, DR. HILL,
FOR YOUR PRESENTATION, YOUR
ENLIGHTNING PRESENTATION AND
YOUR THOUGHTFUL ANSWERS TO THE
QUESTIONS THAT HAVE COME IN.
IF YOU'D LIKE TO MAKE ONE MORE
CONCLUDING REMARK, THAT WOULD BE
GREAT.
OTHERWISE, WE'LL TAKE A BREAK
UNTIL 2:00.
>> I JUST WANT TO SAY, AGAIN,
THANKS SO MUCH.
IT HAS BEEN MY HONOR AND
PLEASURE TO ACTUALLY PRESENT
TODAY AND I WISH YOU A
SUCCESSFUL SYMPOSIUM.
>> THANK YOU.
>> GREAT.
THANK YOU.
WE'LL NOW TAKE A BREAK UNTIL
2:00.
THANKS AGAIN, DR. HILL.
>> ALL RIGHT.
YOU'RE WELCOME.
WE'LL INTRODUCE OUR PANELISTS.
OVER TO YOU, JENNA.
>> THANKS, LIZ.
SO AS LIZ SAID, MY NAME IS JENNA
NORTON.
I'M A DIRECTOR WITH THE NATIONAL
INSTITUTE OF DIABETES AND
DIGESTIVE AND KIDNEY DISEASES.
WE WILL HEAR FROM PANELISTS ON
DATA DRIVEN INNOVATION FOR
HEALTH OF WOMEN.
FOLLOWING OF THESE
PRESENTATIONING, VIVIAN OTA WANG
WILL LEAD A MODERATED
DISCUSSION.
I WILL KEEP OUR PANELISTS IN
THEIR ALLOTTED TIME, SO EVERYONE
CAN SPEAK AND BE RESPECTFUL OF
PANELISTS AND ATTENDEES.
SPEAKERS, I WILL COME BACK ON
CAMERA WHEN YOU HAVE TWO MINUTES
REMAINING.
WHEN YOU SEE MY FACE THAT IS
YOUR CUE TO BRING YOU TALK TO A
CLOSE.
I APOLOGIZE IN ADVANCE AS I WILL
INTERRUPT YOU WITH A THANK YOU
WHEN YOUR TIME HAS COME TO AN
END.
WE WILL HEAR FROM MELISSA
BUFFALO.
MS. BUFFALO, A STIT ZEN OF THE
MUSQUKE NATION, 20 YEARS OF
PUBLIC HEALTH AND DISPARITIES OF
COMMUNITIES.
SHE WAS APPOINTED CEO OF THE
AMERICAN INDIANA CANCER
FOUNDATION IN 2021 WHERE SHE
LEDS EFFORTS TO IMPROVE OUTCOMES
FOR TRIBAL NATIONS AND NATIVE
COMMUNITIES NATIONWIDE.
BEFORE JOINING THE FOUNDATION
SHE HELD POSITIONS AT SANFORD
HEALTH, VOLUNTEERS OF AMERICA
AND ADMINISTRATION OF NATIVE
AMERICANS IN WASHINGTON, D.C.
MS. BUFFALO HOLDS A BA IN CHILD
PSYCHOLOGY, AMERICAN INDIAN
SUBSTITUTES AND AN MS IN HEALTH
DEVELOPMENT IN SOUTH DAKOTA.
SHE IS AN ENROLLED MEMBER OF THE
MUSQUKE CREEK FROM THE LOWER
SIOUX TRIBES.
MS. BUFFALO, THE PODIUM IS
YOURS.
>> GOOD AFTERNOON, I'M HONORED
TO BE REPRESENTING THE AMERICAN
INDIAN CANCER FOUNDATION TALKING
ABOUT DATA AS STORIES FOR HEAL
FOR WOMEN.
THANK YOU FOR OUR INTRODUCTION
AND THANK YOU FOR WELCOMING OUR
VOICE INTO THIS IMPORTANT
CONVERSATION TODAY.
NEXT SLIDE.
I PROMISE I JUST LOOKED AT THE
PICTURE, I HAVE ON THE SAME
DRESS.
I PROMISE IT WAS NOT TAKEN
TODAY.
SOME OF THE CONVERSATION ES WE
TALK ABOUT AT THE WORK WE DO
EVERY DAY YOU HAVE TO FIND HUMOR
AND LAUGHTER BECAUSE IT IS A LOT
OF HEAVY INFORMATION.
HOPEFULLY IN THE NEXT 14
MINUTES, HOPING TO PROVIDE A
UNIQUE OVERVIEW FOR NATIVE
WOMEN, UNDERSTANDING HISTORICAL
CONTEXT SUCH AS TRAUMA AND
UNDERREPRESENTATION.
THE AMERICAN INDIAN CANCER'S
INITIATIVES AND HOW WE GO ABOUT
THAT WORK USING DATA AND
STORIES.
AND WE TAKE THE DATA LOOKING AT
IT NOT JUST A NUMBER, BUT
STORIES AND MEDICINE FOR HEALING
AND HOW WE ALSO THAT DATA AND
THOSE STORIES TO ADDRESS THE
CANCER INEQUITIES FACED BY
NATIVE PEOPLE AND WRAP IT UP AND
LOOK FOR A PATH FORWARD.
NEXT SLIDE.
NATIVE WOMEN FACE UNIQUE
CHALLENGES SHAPED BY HISTORICAL
TRAUMA, SYSTEMIC UNDERFUNDING
AND MISTRUST IN RESEARCH AND
THESE FACTORS CONTRIBUTE TO
SIGNIFICANT DISPARITIES IN
CANCER OUTCOMES.
ONE EXAMPLE IN GENERAL NATIVE
WOMEN HAVE A LIFE EXPECTANCY OF
67 YEARS OF AGE VERSUS 84
NON-HISPANIC WHITE WOMEN.
AND THIS IS, YOU KNOW, AGAIN, WE
CAN COME FROM PERSONAL
EXPERIENCE HAVING LOST MY MOM
WHEN SHE WAS ONLY 56 YEARS OLD
JUST AS I WAS BECOMING A MOM.
UNDERSTANDING HOW WE TAKE THESE
STORIES, RIGHT, AND LOOK AT THE
HISTORICAL TRAUMA THAT NATIVE
PEOPLE HAVE ENDURED AND WE KNOW
IT IS A LIVED REELTS, RIGHT?
WE THINK ABOUT THAT CUMULATIVE
EMOTIONAL AND PSYCHOLOGICAL
WOUNDS THAT HAVE BEEN PASSED
DOWN THROUGH GENERATIONS DUE TO
COLONIZATION, FORCED RELOCATION,
BOARDING SCHOOLS AND SYSTEMIC
VIOLENCE AND THESE TRAUMAS
MANIFEST TODAY IN HIGHER RATES
OF CHRONIC MENTAL ILLNESS, AND
CANCER AMONG NATIVE WOMEN.
TRAUMA CAN ALTER THE STRESS
RESPONSE AND HELTS OUTCOMES FOR
GENERATIONS.
WHEN A NATIVE WOMAN WALKS INTO A
CLINIC, SHE MAY NOT BE CARRYING
ONLY HER PAIN, BUT THE UNHEALED
PAIN OF OUR GRANDMOTHER AND
THOSE WHO CAME BEFORE HER.
THE LENS OF HEALING IS WHOLISTIC
AND WE HAVE TO ADDRESS THE PAST
TO UNDERSTAND THE FUTURE.
THIS TRAUMA HELPS US SEE WHY
NATIVE COMMUNITIES APPROACH THE
HEALTH SYSTEMS IN THE WAY THEY
DO AND HOW WE COLLECT DATA WITH
CAUTION.
WE HAVE TO LOOK AT HEALTH
INTERVENTIONS AND THAT OFTEN
IGNORE THE HISTORICAL TRAUMA AS
BEING INEFFECTIVE OR THAT IT IS
HARMFUL.
HOW CAN WE WORK TO ACKNOWLEDGE
THE HISTORY CAN OPEN DOORS TO
CULTURALLY GROUNDED CARE,
COMMUNITY TRUST AND HEALING.
YOU KNOW, AGAIN, I THINK THAT IS
THE BRIEFEST I HAD A SLIDE ON
HISTORICAL TRAUMA, WHICH IS
REALLY DIFFICULT FOR ME IN
GIVING CONTEXT.
AGAIN, HOW WE CAN TRULY
UNDERSTAND HISTORICAL TRAUMA AND
HELP SEE WHY NATIVE COMMUNITIES
APPROACH DATA COLLECTION IN THE
WAY THEY DO.
COLLECTING HEALTH DATA FOR
NATIVE WOMEN ISN'T JUST STARTING
FROM A NEW DRILL PLACE, WE ARE
STARTING FROM 'A PLACE OF
MISTRUST, UNDERINVESTMENT AND
INVISIBILITY, WHICH I WILL TALK
ABOUT.
I FEEL LIKE THROUGHOUT THIS
PRESENTATION.
AGAIN, LISTING SOME OF THE HARMS
ON HERE.
LISTING SOME OF THESE AND BEING
AS BRIEF AS I CAN, UNDERSTANDING
THE PAST HARMS AND THAT MISTRUST
BETWEEN NATIVE COMMUNITIES AND
RESEARCHERS IS NOT UNFOUNDED, IT
IS OFTEN -- IT IS ROOTED IN A
LONG HISTORY OF RESEARCH
PRACTICES, DATA MISUSE AND
BROKEN PROMISES.
OUR PEOPLE HAVE SEEN OUR STORIES
TAKEN WITHOUT CONSENT, USING
THAT DATA WITHOUT BENEFIT AND
VOICES BEING IGNORED.
EVEN WHEN COMMUNITIES ARE OFTEN
WILLING TO ENGAGE, THEY LACK
RESOURCES TO DO SO EFFECTIVELY
AND SO THE UNDERFUNDING FOR
NATIVE HEALTH SYSTEMS MEANS
FEWER STAFF, OUTDATED TECHNOLOGY
AND LESS INFRASTRUCTURE FOR
COLLECTING AND MANAGING DATA
THAT IS TRUE FOR TOO MANY OF OUR
INDIAN HEALTH SERVICE CLINICS IN
URBAN AND RURAL COMMUNITIES.
ASTERISK NATION IS SOMETHING I
LEARNED FROM SEEING THAT WE ARE
NOT INCLUDED IN DATA.
IT IS MARKED AS STATICALLY
INSIGNIFICANT DUE TO THE SMALL
SAMPLE SIZE.
IT OFTEN MEANS NATIVE PEOPLE ARE
OVERLOOKED IN RESEARCH, FUNDING
DECISIONS AND POLICY.
IT IS KNOWN AS ASTERISK NATION
WHEN YOU ARE NOT INCLUDED IN
THAT DATA.
IT IS A POWERFUL SYMBOL OF WHY
DATA SOVEREIGNTY IS SO IMPORTANT
IN THIS CONVERSATION AND IN THE
WORK WE DO ON A DAILY BASIS.
NEXT SLIDE.
TO UNDERSTAND, AGAIN, THAT DATA
AND THE CONSEQUENCES OF
UNDERREPRESENTATION IN RESEARCH
AND POLICY FROM COLLECTING HOW
WE USE THAT DATA IN A RESPECTFUL
WAY.
WE KNOW THOSE CONSEQUENCES GO
FAR BEYOND THE NUMBERS.
WE CAN LOOK AT NOT HAVING THAT
FULL PICTURE OF THEIR HEALTH
NEEDS, THAT LACK OF CULTURALLY
RELEVANT DATA, UNDERSTANDING
THAT CAN LEAD TO THE
MISUNDERSTANDING OF THE RISK
FACTORS, THE SCREENING BEHAVIORS
AND EVEN TREATMENT OUTCOMES INTO
SURVIVORSHIP AND END OF LIFE.
SO HOW CAN WE DESIGN CARE THAT
WORKS FOR NATIVE PEOPLE IF WE
ARE NOT ABLE TO INCLUDE THEM IN
IMPORTANT RESEARCH EFFORTS.
AGAIN, MISINFORMED POLICY
DECISIONS.
AGAIN, UNDERSTANDING THE LACK OF
REPRESENTATION AND DATA LACKS
REPRESENTATION ACROSS FUNDING.
IF WE DON'T SHOW UP IN FUNDING
WE DON'T SHOW UP IN BUDGETS AND
FUNDING OPPORTUNITIES.
HOW CAN ENTITIES LIKE THE
AMERICAN INDIAN CANCER
FOUNDATION AND OTHERS WORK TO
BREAK THIS CYCLE BY RECLAIMING
DATA AND MAKING SURE OUR VOICES
ARE COUNTED IN HEALTH DATA AND
NATIONAL DATA SETS.
NEXT SLIDE.
THIS IS REALLY WHY THE AMERICAN
INDIAN CANCER FOUNDATION EXISTS
SO WE CAN HELP TO ADDRESS THOSE,
WORK WITH CHUNTS AND ADDRESS
THOSE DISPARITIES HEAD ON.
NEXT SLIDE.
-- WORK WITH COMMUNITIES AND
ADDRESS THOSE DISPARITIES HEAD
ON.
WE WANT TO INCREASE ACCESS TO
EARLY PREVENTION.
I WROTE THE MISSION IS BOTH THE
MISSION AND THE VISION.
I TRULY BELIEVE IN OUR MISSION,
BUT OUR VISION IS TO SEE A WORLD
WHERE CANCER IS NO LONGER A
LEADING CAUSE AMONG OUR PEOPLE
AND WE REALLY DO SEE THAT DAY
FOR OUR GRANDCHILDREN AND WE DO
THIS BECAUSE IT IS NOT JUST
ABOUT HEALTH, IT'S ABOUT JUSTICE
AND HOW WE CAN RESTORE THAT
BALANCE AND ENSURE NATIVE WOMEN
ARE NO LONGER INVISIBLE.
AGAIN, THE WORK WE DO FROM
RESEARCH AND EVALUATION TO
PREVENTION AND POLICY TO WORKING
WITH HEALTH SYSTEMS IS WORKING
TO DO THAT EFFECTIVELY AND IN A
CULTURALLY GROUNDED MANNER.
NEXT SLIDE.
AND SO WHEN WE TAKE THOSE
VISIONS, RIGHT, HOW DO WE GO TO
ACTION?
HOW DO WE USE STRATEGIES TO
RECLAIM INDIGENOUS HEALTH WITH
GOOD INTENTIONS?
AGAIN, WE MAKE THE INVISIBLE
VISIBLE.
WE RAISE AWARENESS OF THE UNIQUE
CANCER BURDENS OUR COMMUNITIES
ARE FACING.
WE DO THAT IN CULTURALLY
GROUNDED SOLUTIONS FROM THE
COMMUNITY BECAUSE WE KNOW THAT
ALREADY EXISTS WITHIN THEM.
WE HOPE TO BUILD LOCAL CAPACITY
BY OFFERING TRAINING, PROVIDING
TOOLS AND TECHNICAL ASSISTANCE
EFFECTIVE AND ROOTED IN OUR WAYS
AS NATIVE PEOPLE AND CAN BE TAI
TORED TO EVERY TRIBE.
THERE ARE 577 -- 574 TRIBAL
NATIONS ACROSS INDIAN COUNTRY
AND THEY HAVE UNIQUE
CHARACTERISTICS.
WE ARE LOOKING TO SHARE ACCURATE
NATIVE LED DATA.
WHEN WE HAVE OUR DATA WE CAN
SHAPE HEALTH OUTCOMES AND
IMPROVE DISPARITIES.
NEXT SLIDE.
I REALLY THINK, YOU KNOW, THAT
SENSE OF NOT JUST SEEING DATA AS
A POINT, AS A NUMBER, BUT,
AGAIN, HOW DO WE SEE THESE AS
STORIES, AS MEDICINES,
UNDERSTANDING THE STORY MY
SISTER HAS AS A BREAST CANCER
SURVIVOR IS SOMETHING THAT CAN
INFORM, YOU KNOW, STORIES FOR
WOMEN DOWN THE ROAD AND THAT IS
HEALING AND THAT IS CONSIDERED
MEDICINE.
IT IS THE LIVED EXPERIENCE OF
OUR PEOPLE.
AND SO THE NEXT CHART AGAIN,
JUST VERY BRIEF ON SOME OF THE
ACTUAL DATA THAT WE HAVE.
BECAUSE -- NEXT SLIDE.
BECAUSE THE DATA IS THERE.
I DIDN'T WANT TO GO TOO DEEP
INTO SOME OF THE BURDENS.
I THINK WE ALL KNOW HOPEFULLY
THAT THEY DO EXIST.
THIS CHART COMPARES CANCER
INCIDENTS AND MORTALITY RATES
BETWEEN ALASKA NATIVE AND
AMERICAN INDIAN AGAINST WHY
WOMEN.
AMERICAN INDIAN AND ALASKA
NATIVE FACE HIGH RATES OF
CANCERS.
THEY ARE OFTEN DIAGNOSED AT
LATER STAGES AND MOST LIVE IN
RURAL IF NOT FRONTIER
COMMUNITIES ACROSS THE U.S. THAT
MAKES IT HARD TO TO GET TO
TREATMENT.
SO THE BURDENS JUST KIND OF PILE
UP FOR OUR PEOPLE.
TO RECEIVER A REFERRAL OUTSIDE
OF INDIANA HEALTH SERVICE WHICH
IS NOT INSURANCE IS ALSO, YOU
KNOW, ANOTHER BURDEN TO NAVIGATE
THOSE HEALTH SYSTEMS.
AGAIN, TRYING TO EMPHASIZE,
THESE AREN'T NUMBERS, THEY ARE
STORIES OF DELAYED DIAGNOSIS,
LIMIT ACCESS TO CARE AND SYSTEM
OF NEGLECT.
WE CURRENTLY HAVE FUNDING FROM
THE CDC IN BREAST AND CERVICAL
TO WORK WITH HEALTH DISABILITIES
TO WORK TO GET WOMEN UNINSURED
SCREENED FOR BREAST AND CERVICAL
CANCER MPLS WE HAVE A FIVE-YEAR
CANCER PLAN TO SUPPORT IMPROVED
HEALTH FOR AMERICAN INDIANS IN
TEXAS THROUGH COALITION EFFORTS.
ONE THING I'M SAD I DID NOT
INCLUDE IS SOME OF OUR
CULTURALLY TAILORED RESOURCES
THAT ALIGN WITH OUR TRIBAL
COMMUNITIES BY INCORPORATING
LANGUAGE, IMAGES AND WORKING
WITH COMMUNITIES TO FINALIZE AND
GET THEM OUT THE DOOR AND IN
CLINICS AND COMMUNITY AND TO BE
CRUISED FOR CONVERSATIONS.
NEXT SLIDE.
AND WHEN WE LOOK AT THE DATA
THROUGH A CULTURAL LENS WE CAN
SEE WHAT STANDARD ANALYSIS CAN
OFTEN MISS.
WE CAN LOOK AT IMPACT OF
TRADITIONAL ROLES, HISTORICAL
TRAUMA AND THE COMMUNITY-BASED
CAREGIVING AND USE THOSE
INSIGHTS TO HELP UNDERSTAND WHAT
IS NOT HAPPENING, BUT
UNDERSTANDING THE WHY AS WELL.
GROUNDS THAT WORK IN CULTURAL
KNOWLEDGE, WE CAN USE THAT TO
DESIGN INTERVENTIONS THAT
ACTUALLY RESONATE WITH OUR
COMMUNITIES, WHETHER OR NOT WE
ARE TALKING ABOUT CANCER
SCREENINGS, HOW WE DELIVER CARE
OR WHERE PATIENT NAVIGATION
COMES IN.
WE SEE CULTURE AS A BRIDGE IN
THIS WORK.
WE CURRENTLY HAVE A PILOT
RESEARCH IN MINNESOTA TO
INCREASE PROVIDERS KNOWLEDGE
WORKING WITH NATIVE PEOPLE TO
BETTER ENGAGE WITH THOSE
PATIENTS THROUGH THAT CULTURALLY
TAILORED LENS AND USING THIS
TRAINING AS A PRE AND POST TO
DETERMINE WHETHER OR NOT THIS
TRAINING IS EFFECTIVE.
AGAIN, IT IS PROMISING TO SEE
THIS HEALTH SYSTEM INITIATED
THIS CONVERSATION AND WANTS TO
STRENGTHEN THEIR EFFORTS TO
INTEGRATE CULTURALLY CENTERED
CARE INTO THEIR HEALTH SYSTEM
AND IMPROVE RELATIONSHIPS WITH
THE TRIBES IN MINNESOTA.
NEXT SLIDE.
REALLY, AGAIN, I FEEL LIKE THE
THEME ACROSS THESE SLIDES HAVE
BEEN HONORING, INTEGRATING
TRADITIONAL KNOWLEDGE LOOKING AT
THAT DATA AND THOSE STORIES.
UNDERSTAND THE WHAT AND WHY AND
RECONNECTING BACK TO THE HOW,
AND THAT IS WHERE THE
TRADITIONAL KNOWLEDGE COMES IN.
IT DOESN'T SEPARATE FROM THE
HEALTH.
WE HAVE TO TAKE ALL OF IT INTO
CONSIDERATION BECAUSE IT IS ALL
HEALTH.
WE CAN INTEGRATE OUR TRADITIONAL
PRACTICES INTO THE HEALTH CARE,
INTO THE TREATMENT WHEN THERE'S
A DIAGNOSIS AND AGAIN, USING
THOSE TO HELP IMPROVE THE LIVES
OF NATIVE PEOPLE, WE CAN LOOK AT
STORYTELLING, CEREMONY, WE CAN
USE THESE TO SUPPORT THE
WELLNESS AND FUTURE OF RESEARCH
AND STUDIES TO IMPROVE THE
HEALTH AND WELLNESS AND SEE IT
IS EFFECTIVE AND MAKE CHANGES
THAT, YOU KNOW, ARE REVIEWED BY
NATIVE PEOPLE AND FOR NATIVE
PEOPLE.
NEXT SLIDE.
AND I REALIZE I'M DOWN TO TWO
MINUTES.
I'M GOING TO TALK FAST.
AS NATIVE PEOPLE WE WANT TO TAKE
THESE INTERVENTIONS AND TAILOR
THEM TO OUR COMMUNITIES AND WORK
WITH THEM AND USE THE DATA
GROUNDED IN COMMUNITY REALITIES.
BEING SPECIFIC TO REGIONS, TO
COMMUNITIES, TO TRIBES SO THAT
WE CAN TARGET SUCCESSFUL
INTERVENTIONS.
NEXT SLIDE.
I WON'T GO TOO MUCH INTO THIS
ONE BECAUSE WE TALKED ABOUT THE
UNIQUE BURDENS FACED BY NATIVE
PEOPLE.
AGAIN, HIGHLIGHTING WHAT SOME OF
THOSE DIFFERENCES ARE, CANCERS
LIKE CERVICAL, BREAST AND COLO
RECTAL OCCUR AT HIGHER RATES FOR
OUR PEOPLE AND THESE DISPARITIES
ARE NOT RANDOM.
THEY ARE ROOTED IN HISTORIC
NEGLECT.
NATIVE WOMEN FACE GEOGRAPHIC,
FINANCIAL AND SYSTEMIC BARRIERS
TO CARE.
WE CAN GO TO THE NEXT SLIDE.
IT IS SOMETHING WE WANT TO DO
WITH COMMUNITIES.
HERE IS A FEW OF THE RESOURCES
AGAIN.
I THINK WE ALL CAN UNDERSTAND
THE IMPORTANCE OF COMMUNITY G
GAME -- COMMUNITY ENGAGEMENT AND
HOW WE DO THAT.
HOW DO WE GO IN COMMUNITY?
HOW DO WE BUILD THAT
RELATIONSHIP?
AND THAT IS OFTEN SITTING THERE,
NOT GOING IN WITH AN AGENDA,
BEING ABLE TO HEAR THE COMMUNITY
VERSUS DOING MORE TALKING.
NEXT SLIDE.
SO I THINK -- NEXT SLIDE AGAIN.
USING THIS INFORMATION AS A PATH
WAY FORWARD TO HELP WITH POLICY
RECOMMENDATIONS AND ADVOCACY
THROUGH A NATIVE LENGS AND
WORKING WITH ACS AND OTHERS WHO
ARE DOING SIMILAR WORK BUT
OFTENTIMES NOT THROUGH THE
NATIVE LENS.
NEXT SLIDE.
UNDERSTANDING THOSE LONG-TERM
PARTNERSHIPS MAKE A DIFFERENCE.
WHEN WE THINK ABOUT OUR PERSONAL
RELATIONSHIPS THE LONGEST ONES
TRULY HAVE OUR HEART AND OUR
BENEFIT AND WE SEE THAT
CO-EXISTENCE OF THAT.
NEXT SLIDE.
SO CLOSE I WANT TO EMPHASIZE
THAT DATA SOVEREIGNTY IS NOT
JUST ABOUT CONTROL.
IT IS ABOUT HEALING.
WHEN WE RECLAIM OUR STORIES WE
RECLAIM OUR POWER.
NEXT SLIDE.
THANK YOU FOR LISTENING AND I
HOPE I DIDN'T TALK TOO FAST.
>> THAT WAS TIMED PERFECTLY TO
THE SECOND.
THANK YOU SO MUCH, MS. BUFFALO.
NEXT WE HEAR FROM ROCHELLE
PROSSER, AN ARMY MOM AND
DEDICATED HEALTH CARE FOUNDER
WHO TURNED HER FAMILY'S
STRUGGLES CAN CANCER AS A
MISSION TO HELP OTHERS.
A WIFE AND PARENT OF TWO CANCER
SURVIVORS.
SHE SPENT NINE YEARS LOOKING FOR
A VIABLE TREATMENT.
SHE FOUNDED THE PROSSER
TREATMENT DATA BASE REDUCING
STRESS AND INFORMS GAPS FOR
OTHER FAMILIES.
THROUGH HER COMPANY, ORCHID
HEALTH CARE SOLUTIONS, SHE
PROVIDES NURSING DEDICATED
ELECTRONIC HEALTH RECORDS,
CANCER EDUCATION AND HEALTH CARE
SYSTEM NAVIGATION TO PATIENTS,
ONCOLOGY PROVIDERS AND SHE IS A
FOUNDING MEMBER OF THE
PRESIDENT'S PANEL OF THE CANCER
MOON SHOT AND REMAINS AN ACTIVE
MEMBER OF NUMEROUS PROFESSIONAL
ORGANIZATIONS.
WELCOME, MS. PROSSER.
>> HELLO, EVERYONE.
NICE TO MEET YOU.
FOLLOWING MELISSA BUFFALO IS A
PLEASURE AND A TREASURE.
THIS MONTH IS BRAIN TUMOR
AWARENESS AND GOING GRAY FOR
AWARENESS SO MY BACKGROUND IS
GRAY.
I'M TALKING ABOUT SURVIVING
TUMORS USING DATA.
NEXT SLIDE.
YOU'VE HAD MY BACKGROUND.
I JUST HAVE IT HERE.
JUST TO UNDERSTAND THAT YOU GO
THROUGH THE CANCER JOURNEY AND
THERE IS EVERYTHING ELSE THAT
COMES BACK AND MOST PEOPLE FEEL
THAT YOU'VE GONE THROUGH THE
JOURNEY, NOW YOU DON'T NEED ANY
HELP.
MOST OF THE SUPPORT, IT IS MOST
IMPORTANTLY NEEDED IN THAT
SECOND HALF OF THE JOURNEY.
WE CAN GO TO THE NEXT SLIDE.
FOR US, IT IS THE HEART OF THE
MATTER.
ALTHOUGH IT IS BRAIN CANCER, BUT
EVEN THOUGH YOU ARE GETTING
CHEMOTHERAPY AND ALL OF THESE
OTHER TREATMENTS, YOU NEVER GO
UNSCATHED.
IT ENDS UP BEING THE WHOLE BODY
THAT RECEIVES THE TREATMENT
WHILE YOU ARE TRYING TO SURVIVE.
SO THERE'S LONG-TERM PROBLEMS
AND ISSUES SURVIVORS FACE AFTER
TREATMENT.
I TRULY BELIEVE NURSING IS THE
MOST FOCUSED PROFESSIONAL TO
ADVOCATE FOR PATIENTS BECAUSE WE
COLLECT THE DATA, STORE IT AND
DISSEMINATE IT TO ENSURE
PATIENTS HAVE THE BEST QUALITY
OUTCOME AFTER THEY HAVE
SURVIVORED CANCER.
NEXT SLIDE.
SO FOR US, LOOKING AT THE
CARDIOVASCULAR JOURNEY, EVEN
THOUGH IT IS IN THE BRAIN, THE
BRAIN HAS A CARDIOVASCULAR
COMPONENT TO IT.
SO THERE IS A COST AND TRADEOFF
WHILE YOU SURVIVE TO THE ACTUAL
HEART, IN TERMS OF DISRHYTHMIAS,
WHAT IS THE FERTILITY STATUS.
DID THE OTHER ORR DWANS GET THE
PROFUSION NEEDED.
THAT GOES FOR BOTH MEN AND
GIRLS, TOO.
AND SO AS THEY TRANSITION FROM
THOSE PEDIATRIC EPISODES OF
SURVIVING CANCER OR MAYBE THEY
ARE IN ADOLESCENTS AND YOUNG
ADULTS AND THEY HAVE TO
TRANSITION, WE OFTEN FORGET AS
PARENTS, AS CAREGIVERS, YES,
THEY ARE TRANSITIONING, BUT WHEN
THEY BECOME AN ADULT WE OFTEN
CREATE SITUATIONS WE HAD NOT
ANTICIPATED AND IF WE INTERVENE
SOONER WITH THE CARDIAC
SPECIALIST WE CAN PRESERVE
REPRODUCTIVE HISTORY AS WELL AS
THEIR INTIMACY AND POTENTIAL FOR
HAVING THOSE LONG-TERM
RELATIONSHIPS AS AN DOESN'T.
NEXT SLIDE.
WHEN WE THINK ABOUT THE
SURVIVORSHIP RATES IN THE UNITED
STATES AND THESE STATISTICS WERE
BACK FROM 2019, 247 PEOPLE DIE
EVERY HOUR BECAUSE OF LACK OF
CANCER RESOURCES.
AND WE MAY THINK THAT IS NOT A
GREAT NUMBER, BUT DURING COVID
WE CALLED THIS AN EPIDEMIC AND A
PANDEMIC.
WHEN WE THINK ABOUT IT ANNUALLY
IN 2022, WE HAD ALMOST 700,000
PEOPLE DIE JUST FROM CANCER
ALONE AND THIS WAS BECAUSE THEY
DIDN'T HAVE THE ACTUAL ACCESS TO
CARE OR RESOURCES THAT THEY WERE
ABLE TO BE AND WERE DIAGNOSED
MUCH LATER IN LIFE.
BUT STILL, 700,000 PEOPLE
ANNUALLY IS A SIGNIFICANT
NUMBER.
BUT THEN LET'S LOOK AT THE SPEND
WE DO EVERY YEAR.
$87.4 TRILLION.
I WILL SAY IN PEDIATRIC AND
ADOLESCENTS CARE,LESS THAN 1% IS
ALLOCATED TO ANY DATA, DRUG
RESEARCH OR DRUG DEVELOPMENT.
AND SO WE HAVE TO BE REALISTIC
IN WHAT'S HAPPENING HERE.
AND AS IT SAYS UNDERNEATH HERE,
WHEN WE ARE LOOKING FOR QUALITY
OF LIFE, WHAT COMES AFTER YOU
SURVIVE?
NONE OF THESE DOLLARS ARE
ALLOCATED TOWARDS WHAT COMES
AFTER, WHAT COMES NEXT.
SO IT IS IMPORTANT TO HAVE
SOMETHING AS A RESOURCE TO LEAN
TO.
FOR MYSELF, MY DAUGHTER'S CANCER
WAS EXTRAORDINARILY RARE AND SO
THERE WAS ACTUALLY NOTHING
AVAILABLE TO TURN TO.
AS HEALTH CARE PROVIDERS WE WANT
TO DO NO HARM, WE WANT TO BE
ABLE TO INTERCEDE OR AT LEAST
MAKE LIFE BETTER FOR HOWEVER
LONG THAT IT.
WHEN YOU DON'T EVEN HAVE A PLACE
TO TURN AND YOU ARE IN A
POPULACE CENTER, WHAT DOES THE
RURAL HEALTH HAVE AVAILABLE TO
THEM?
THESE ARE THINGS THAT CAME TO
MIND AS I THOUGHT ABOUT WHAT WAS
NEEDED AND WHAT I WANTED TO DO.
NEXT SLIDE.
SO WHEN WE LOOK AT BRAIN CANCER
CARE AND CARDIOVASCULAR, THERE
ARE DISTINCT HEALTH DISPARITIES.
THE WORLD HEALTH ORGANIZATION
ASKED US BY 2023 TO FOCUS ON
CARDIOVASCULAR HEALTH AND
STROKE.
MOST OF THE TIME IN THAT
STATISTICAL DATA, PEDIATRIC
BRAIN POPULATION IS LEFT OUT.
WHO WE ARE REALLY DICTATES HOW
WE EXPRESS CANCERS AND TREATMENT
AND RESPONSES TO THE
CARDIOVASCULAR SYSTEM.
WHEN YOU THINK OF IN THE
PEDIATRIC SPACE, AT THE AGE OF
12 IN THESE PEDIATRIC CENTERS
YOU ARE CONSIDERED AN ADULT, YET
THE DOSING THEY GIVE YOU IS AT A
CHILD LEVEL OF THE MAXIMUM LEVEL
OF 75KILO GRAMS.
THEY WEIGH MUCH MORE THAN THAT.
THEY END UP RECEIVING SUB
STANDARD CARE BECAUSE THEY WERE
TRANSITIONING FROM ONE FACILITY
THAT IS PEDIATRIC FOCUSED TO THE
ADULT CENTER AND MOST OFTEN
THERE IS NO HANDOFF BETWEEN THE
PEDIATRICIAN AND ADULT
SPECIALIST.
YOU TURN 16, IT IS TIME TO
PREPARE TO TRANSITION TO THAT
PHYSICIAN AND OFF YOU GO.
AND THAT ADOLESCENT, THAT
PEDIATRIC PATIENT DOESN'T
UNDERSTAND THEIR HISTORY THAT
GOES WITH THEM AND OFTEN THEY
DON'T WANT THE PARENT TO BE
INVOLVED IN THOSE CONVERSATIONS
BECAUSE GRANTED THEY ARE AN
ADULT AND THEY SURVIVED.
SO ONE TREATMENT DOES NOT FIT
ALL IN ANY SIZE OR CATEGORY IN
PEDIATRICS, ADOLESCENTS.
WE CAN SWOMEWHAT DO IN ADULT
CANCERS BUT EVEN THEN WE ARE
FINDING IT DOESN'T WORK FROM THE
TOP DOWN.
WE HAVE TO LOOK AT THE NUANCED
APPROACH.
NEXT SLIDE.
SO HERE ARE THE PROBLEMS THAT WE
FOUND LOOKING AT THE DATA.
AND IT IS THREE THINGS.
POOR PATIENT EDUCATION.
LIMITED ACCESS TO THERAPEUTICS
AND SILOED SYSTEM NAVIGATION.
WHERE YOU ENTER YOUR HEALTH CARE
SYSTEM WILL ACTUALLY DICTATE THE
LEVEL OF CARE AND TREATMENT
OPTIONS THAT YOU RECEIVE.
FOR EXAMPLE, YOUR ZIP CODE AND
YOUR TAX BASE WILL DETERMINE
WHAT YOUR INSURANCE WILL PAY.
IF YOU WENT TO A COMMUNITY
HOSPITAL VERSUS AN ACADEMIC
CENTER OF EXCELLENCE OR VERSUS A
CANCER CENTER, THAT WILL GREATLY
IMPACT YOUR OUTCOME, YOUR ACCESS
TO CLINICAL RESEARCHERS AND
CLINICAL TRIALS.
IF YOU LIVE IN AN URBAN CENTER
VERSUS A RURAL CENTER YOU MAY
NOT HAVE THOSE SPECIALISTS, BUT
DEPENDING ON WHERE YOU LIVE, YOU
MAY LIVE JUST OUTSIDE OF THE
BARRIER OF FIVE MILES
SURROUNDING YOU AND SO YOU END
UP BEING IN A HEALTH CARE DESERT
FOR DIAGNOSIS, TREATMENT AND
ACCESS TO THOSE RESEARCHERS
ANYWAY.
NEXT SLIDE.
SO WHAT WE FOUND IS THAT IF WE
USE QUALITY OF LIFE METHODOLOGY
AND WE HAVE ACCESS TO A ROBUST
DATA SET THAT SAYS WHAT IS
AVAILABLE THAT IS NOT RESTRICTED
BY YOUR INSURANCE COMPANY, YOUR
ZIP CODE OR THE STATE YOU LIVED
IN, YOU ACTUALLY HAVE BETTER
OUTCOMES.
AND IT WAS SHOWN THROUGH COVID
THAT VIRTUAL NURSING CARE
ACTUALLY IMPROVED OUTCOMES IF
THE PATIENT COULD BE CONNECTED
AND HAVE ACCESS WITH THEM.
SO WE FEEL THAT WHOLISTIC
APPROACH WITH NURSING BEST
PRACTICES, NURSING LED, ACTUALLY
IMPROVE PARTIAL -- PATIENT
OUTCOMES AND SAVED LIVES.
IN THAT TRIAD, IF YOU REMOVE
ANYTHING, YOU ACTUALLY SAVE THAT
PERSON'S LIFE.
WE ARE NOW SEEING PATIENTS
LIVING LONGER WITH CHRONIC
DISEASE AND WITH BETTER
OUTCOMES.
I THINK WE CAN DO JUST A BIT
MORE.
NEXT SLIDE.
SO WE ALSO FEEL UNDER THE
CLINICAL DECISION SUPPORT TREE
IF YOU BRING IN QUALITY OF LIFE
DATA THAT THE PATIENT REPORTED
OUTCOMES ARE TELLING US, EITHER
USING AN ECOLOGICAL MONETARY
ASSESSMENT OR A SAFETY SLEEP
ACTIVITY FATIGUE AND TASK
EFFECTIVENESS, YOU ACTUALLY CAN
CHANGE THE TRAJECTORY AND
PROVIDE BETTER KNOWLEDGE, BETTER
SATISFACTION WHILE PATIENTS ARE
ENDURING CLINICAL CHEMOTHERAPY
OR RADIATION OR WHATEVER
TREATMENT THEY HAVE DECIDED.
BUT ALSO BEING STAKEHOLDERS AND
BEING LISTENED TO, YOU CAN
ACTUALLY HAVE BETTER OVERALL
SURVIVORSHIP OUTCOMES.
INCLUDING WHEN SIDE EFFECTS
HAPPEN, YOU'LL INTERVENE EARLIER
BECAUSE YOU WILL BE TRACKING IT,
THE PATIENT IS AWARE AND BECOMES
AN ACTIVE PARTICIPANT.
THAT NEEDS TO HAPPEN AT ALL
LEVELS.
WHERE IT IS LOOKING AT THE LAB
RESULTS, CLINICAL SUPPORT, CURE,
LOOKING AT THE DATA ANALYTIC.
WHATEVER THE THERAPEUTIC LIST IS
MEANING WHAT ARE THE
MEDICATIONINGMEDICATIONS
THEY ARE TAKING.
UNDERSTANDING FULLY WHAT THAT
MEANS AND EXPLAINING IT TO THEM
AT A LEVEL THEY UNDERSTAND.
NEXT SLIDE.
SO WE FOCUSED HERE MOSTLY ON
RURAL HEALTH AND THE REASON WHY
WE DID THAT VERY QUICKLY, THE
REASON WHY WE DID THAT IS TO
STAY WHEN HURRICANES COME, WHO
ARE THE MOST PEOPLE IMPACTED?
IT'S USUALLY DOWN IN THE
PANHANDLE OF FLORIDA OR UP THE
EAST COAST OR SOMEWHERE IN THE
GULF.
WHEN YOU LOOK AT THE HEALTH CARE
THAT'S AVAILABLE, MOST OFTEN IT
IS THE RURAL CITIES, 1,500 OR
LESS POPULATIONS THAT ARE
IMPACTED.
AND SO HOW CAN WE DISCERN THIS
DATA AND MAKE SURE WE REACH INTO
THESE AREAS AND ENSURE THAT ALL
PEOPLE WITHIN THE UNITED STATES
HAVE EQUAL ACCESS AND
OPPORTUNITY TO WHAT THE CARE AND
THE ADDITIONAL SUPPORT THAT THEY
WOULD NEED.
BECAUSE WHERE YOU START IN
CANCER IS NOT WHERE YOU FINISH.
AND YOU MAY HAVE PREEXISTING
CONDITIONS OR CHRONIC CONDITIONS
WHILE YOU ARE GOING THROUGH
CANCER.
BUT THEN THEY STAY.
THESE CHRONIC CONDITIONS STAY.
THEY DON'T ALWAYS RESOLVE.
OR IF YOU ARE NOT LIVING A
HEALTHY LIFESTYLE IN THE FIRST
PLACE, HOW DO WE MANAGE THAT AND
BEST APPROACH WHERE YOU ARE AND
GIVE YOU THE CLINICAL SUPPORT
THAT YOU NEED TO LIVE LONGER,
BETTER AFTER WITH QUALITY AND
HAPPINESS.
NEXT SLIDE.
SO WHAT WE FOUND, PATIENTS WANT
TO KNOW.
THEY WANT TO KNOW.
THEY WANT ACCESS.
IF THEY ARE RURAL, WHY DO THEY
HAVE TO WAIT UNTIL THEY GO TO AN
ACADEMIC CENTER TO BE CONNECTED?
'BUT WHEN WE LOOK AT IT GREATER,
THE UNIVERSITY OF NORTH CAROLINA
AND UPMC AND VANDERBILT
UNIVERSITY GOT TOGETHER AND
POLLED THEIR PATIENTS TO SEE
WHAT THEY WANT TO KNOW.
GOOD, BAD, OR UGLY.
DO THEY HAVE ACCESS TO THEIR
MEDICAL INFORMATION?
AND WHAT WE FOUND IS 96% OF
THOSE PATIENTS WANT TO KNOW
THEIR TEST RESULTS.
ABSOLUTELY WANT TO KNOW.
AND THEY DON'T CARE IF IT IS
GOOD.
THEY DON'T CARE IF IT IS BAD.
FOR THOSE THAT DIDN'T WANT TO
KNOW, IT WAS LITERALLY
STATISTICALLY INSIGNIFICANT AT
0.005%.
THE REST OF THEM WERE IT DIDN'T
MATTER AND IT'S NOT GOING TO
CHANGE HOW I FEEL ABOUT WANTING
TO KNOW.
SO BASICALLY ALL OF THAT IS 96%.
WE THEN LOOKED INTO THE QUESTION
OF BUYER'S REMORSE.
ONCE YOU KNOW, DO YOU NOT WANT
TO?
THEY SAID, NOPE, WANT TO KNOW.
ALSO, CAN WE ACCESS THE DATA IN
THE WAY THEY NEED TO IN THE WAY
THEY WANT TO?
SO NEXT SLIDE.
I WILL JUST PRESENT ON THAT AND
I WILL FINISH UP.
WHAT WE FOUND IS GRANDMOTHERS TO
6-YEAR-OLDS ARE USING SOME DATA
TOOLS, SOME ARTIFICIAL
INTELLIGENCE TO GET ACCESS TO
INFORMATION.
AS A MATTER OF FACT, MY
GRANDMOTHER, MY MOM, SHE GETS
HER GRANDCHILDREN TO HELP HER
LOG INTO HER MEDICAL DATA AND
MAKE SURE THAT SHE CAN HAVE
ACCESS TO IT, HELP WITH WRITING
APPEALS INSURANCE.
AND MOST OF THE PATIENTS SAY
THEY HAVE LESS STRESS, THEY HAVE
LESS SENSE OF URGENCY AND
ANXIETY USING THESE AI TOOLS.
WHEN WE TRANSITION THAT INTO
OVERALL PATIENT OUTCOMES, WHY
AREN'T WE DOING THIS?
WE SHOULD DO THIS.
WE SHOULD ALLOW THEM.
WE HAVE TO LOOK AT HOSPITAL
POLICIES AND WHAT IS PREVENTING
PATIENTS FROM HAVING THEIR
ACCESS BECAUSE A HAPPY PATIENT
IS A PATIENT THAT RECEIVES
QUALITY CARE.
AND A PATIENT THAT IS
KNOWLEDGEABLE OF THEIR CARE IS A
PATIENT WHO IS AN ACTIVE
PARTICIPANT AND ABLE TO ASSIST
THE HEALTH CARE PROVIDER AND
EVERYONE ELSE IN THEIR CARE.
AND SO THAT'S HOW WE USE DATA
LOOKING AT DEFINITIVE RULES IN
REDUCING STRESS, REMOVING THE
PAIN POINTS AND HELPING THEM
NAVIGATE ALL THE DIFFERENT CARE
SYSTEMS.
THANK YOU.
>> THANK YOU SO MUCH, MS.
PROSSER.
THAT WAS LOVELY.
WE WILL NOW HEAR FROM DR. ALEX
CARLISLE.
DR. CARLISLE HOLDS A PH.D. IN
BIOCHEMISTRY AND MOLECULAR
BIOLOGY FROM HOWARD UNIVERSITY
AND RECEIVED POST DOCTORAL
TRAINING AT NIH.
HE APPLIES DATA ANALYTIC
APPROACHES TO UNDERSTAND DISEASE
PROGRESSION AND HOW TO PREVENT
IT.
AT NIH HE DEVELOPED
BIOINFORMATIIC TOOLS.
LATER WHILE AT NORTHUP GRUMMAN
HELP HE CREATED A PROTOTYPE IN
THE CLOUD AND LATER LED THE
DEVELOPMENT OF A PROTOTYPE FOR
PREDICTING TUMOR STAGE AND
HEALTH OUTCOME IN NEUROBLASTOMA
PATIENTS.
HE IS CROW OF -- CEO FOR THE
NATIONAL ACCELERATOR FOR
DISCOVERY IN PRECISION HEALTH.
WELCOME, DR. CARLISLE.
>> THANK YOU FOR THAT
INTRODUCTION.
IT IS A PLEASURE TO BE HERE.
WHAT I HOPE AND THE PLACING OF
MY TALK WAS SPOT ON BECAUSE I'M
HOPEFUL THAT I WILL SORT OF
RECAPITULATE MUCH OF WHAT WAS
HEARD, BUT FRAME THAT FROM A
PERSPECTIVE OF WOMEN'S HEALTH
AND SOME OF THE THINGS WE NEED
TO DO TO APPLY DATA INNOVATION
IN THAT AREA TO ADVANCE MORE
PRECISION-BASED APPROACHES TO
IMPROVING WOMEN'S HEALTH CARE.
NEXT SHLIDE.
WE ARE THE NATIONAL ACCELERATOR
FOR DISCOVERY IN PRECISION
HEALTH.
WE WORK AT THE INTERSECTION OF
RESEARCH, T TECHNOLOGY AND
REAL-WORLD EVIDENCE.
WE ARE TRYING TO IMPROVE HEALTH
OUTCOMES, STRENGTHEN OUR SYSTEMS
AND LEAD TO A HEALTHIER NATION.
THIS IS INFORMED THROUGH
COLLABORATIVE MODEL.
WE WORK WITH POPULATIONS THAT
ARE IMPACTED BY THE WORK OR
FIELD OF STUDY WE ARE ENGAGED IN
AND WE DO THAT THROUGHOUT THE
ENTIRE LIFE CYCLE OF THAT WORK.
THIS IS CO-DESIGN,
CO-IMPLEMENTATION,
CO-GOVERNANCE, BE IT POLICY,
PROGRAM, RESEARCH STUDY OR
TECHNOLOGY ITSELF.
THAT IS REALLY THE FUNDAMENTAL
THINGS THAT DRIVES US AT NADPH.
WE ARE INTERCEPTIONAL AND IT
REALLY MAKES THE RESEARCH AND
OUTCOMES MUCH MORE ROBUST.
TO THAT EFFECT, WE ARE ACTUALLY
WORKING AS WE DISCOVER NEW
THINGS ABOUT HEALTH.
WE HAVE BEEN HEARING ABOUT THE
MULTIDIMENSIONALITY OF THAT IN
PREVIOUS TALKS.
ALL THIS IS CONVERGING ON AN
EVOLVING UNDERSTANDING OF HEALTH
AND WHAT THAT IS, HEALTH
ONTOLOGY.
SUPPORT AT NADPH WE CREATED A
FRAMEWORK THAT CONSISTENTS OF
CLOUD-BASED DATA INFRASTRUCTURE,
STRONG ETHICS AND GOVERNANCE
MODELS AND VERY ACTIVATED
NATIONAL ECOSYSTEM THAT REALLY
SPANS THE DIRECT COMMUNITY
NETWORK, ACROSS ACADEMIA AND THE
TECHNOLOGY INDUSTRY.
WE ARE DOING THAT TO COMBINE
REAL-WORLD EVIDENCE WITH DATA
ACROSS THE DIMENSIONALITY OF THE
VARIOUS DOMAINS.
THAT INCLUDES BIOLOGY, BEHAVIOR,
ENVIRONMENT, SOCIAL AND SYSTEMS
LEVEL DATA.
ALL THIS REALLY ADVANCED
DISCOVERY AND GENERATE
MEANINGFUL HEALTH INSIGHTS.
NEXT SLIDE, PLEASE.
SO WHEN WE LOOK AT WOMEN'S
HEALTH, I THINK IT IS IMPORTANT
FOR US TO REALLY HAVE AN
UNDERSTANDING OF WHAT ARE THE
THINGS THAT ARE DRIVING WOMEN'S
HEALTH AND MORE IMPORTANTLY,
REPORT OUTCOMES THAT ARE
OCCURRING IN WOMEN'S HEALTH AND
TRY TO UNDERSTAND HOW WE WORK
TOGETHER TO IMPROVE THAT HEALTH.
THE RESEARCH GENERALLY, BUT MORE
SPECIFICALLY, THROUGH DATA
INNOVATION.
SO, AGAIN, THIS REALLY LOOKS,
BEGINS WITH LOOKING AT
FUNDAMENTALLY THE STATE OF
WOMEN'S HEALTH.
WHAT ARE THE CONDITIONS THAT ARE
MOST HEAVILY IMPACTING WOMEN'S
HEALTH?
HOW WELL ARE WE DOING INCLUDING
WOMEN IN THE RESEARCH CAPTURING
NECESSARY DATA TO HELP STUDY AND
UNDERSTAND THESE CONDITIONS.
AND THEN THAT DATA BEING
CLINICAL IN NATURE AND
REAL-WORLD OUTCOMES, HOW ARE WE
DOING AT CAPTURING THAT DATA.
GENERALLY, WHAT WE ARE SEEING IS
AN IMPROVEMENT IN REPRESENTATION
OF WOMEN IN RESEARCH.
WE STILL HAVE SOME AREAS WE NEED
TO IMPROVE ON.
IF WE LOOK AT THE BIGGEST AREAS
OF HEALTH CONCERN FOR WOMEN, WE
SEE THAT WE NEED TO IMPROVE ON
INCLUDING WOMEN IN CLINICAL
TRIAL.
THERE HAS BEEN SOME IMPROVEMENT,
BUT MORE IMPORTANTLY, WE NEED TO
DO A BETTER JOB OF INCLUDING
WOMEN IN THE REAL-WORLD EVIDENCE
PROCESS.
IF YOU LOOK AT THE VARIOUS
DISORDERS THAT ARE MOST HEAVILY
IMPACTING WOMEN'S HEALTH, YOU
CAN SEE THAT.
WHILE WE NEED TO HAVE MORE
REPRESENTATION OF WOMEN'S DATA
IN RESEARCH TO IMPROVE
UNDERSTANDING IN WOMEN'S HEALTH,
WE NEED TO DO A BETTER JOB OF
INVOLVING WOMEN IN THAT PROCESS.
SO IF WE GO TO THE NEXT SLIDE.
SO IN ORDER TO DO THAT MORE
EFFECTIVELY, WE NEED TO
UNDERSTAND WHAT ARE THE BARRIERS
TO WOMEN PARTICIPATING IN THE
RESEARCH THAT GENERATES THAT
DATA?
IF WE LOOK AT THOSE BARRIERS,
THEY ARE MULTIFACTORIAL AND SPAN
VARIOUS STRAT OF SOCIETY,
ECONOMIC, EDUCATION, LOGISTICS
IN HOW WE DESIGN RESEARCH
STUDIES AND EXTRACT DATA AND
SHARE THAT.
THE THINGS HIGHLIGHTS IN RED ARE
AREAS THAT ARE DISPROPORTIONATE
IN WOMEN.
THERE ARE HIGHER OUT OF POCKET
EXPENSES FOR HEALTH CARE COSTS
CONNECTED WITH WOMEN.
THAT IS A BARRIER FOR WOMEN
PARTICIPATING IN HEALTH CARE IN
GENERAL AND CERTAINLY ANYTHING
INVOLVING HEALTH CARE RESEARCH.
SOCIAL DYNAMICS.
OFTENTIMES IN OUR SOCIETY, WOMEN
ARE THE PRIMARY CAREGIVERS AND
WITH THAT COMES AN ENORMOUS
RESPONSIBILITY IN TERMS OF
MAKING SURE FAMILY IS FIRST AND
PUTTING THAT CARE OF FAMILY
BEFORE THEIR OWN CARE.
SO THAT IS SOMETHING WE NEED TO
BE COGNIZANT ABOUT AS WE LOOK TO
INVOLVE WOMEN MORE GREATLY IN
RESEARCH.
AND THEN, OF COURSE, FROM A
STUDY DESIGN, WE ARE IMPROVING
UPON THAT BUT WE NEED TO BE MORE
INTENTIONAL IN DESIGNING THE
STUDIES AND CRITERIA TO
INCORPORATING WOMEN.
THE IMPACTS OF THIS ARE
INTUITIVE OF THE
UNDERREPRESENTATION.
WHEN WE HAVE THAT LACK OF
REPRESENTATION OF WOMEN IN
RESEARCH, WE ARE JUST NOT GOING
TO HAVE SUFFICIENT AMOUNT OF
SCIENTIFIC DATA WE NEED TO
BETTER UNDERSTAND DISEASE AND
MORE IMPORTANTLY, THE IMPACT
THAT IT CAN HAVE ON INCIDENT
OUTCOMES, THERAPEUTIC RESPONSE
AND THOSE THINGS.
AND SO THAT'S GOING TO CERTAINLY
RESULT IN LESS EFFECTIVE HEALTH
CARE.
AND WE SEE THINGS LIKE LESS
EFFICIENT OR DIAGNOSES,
MISDIAGNOSES, LIMITS
UNDERSTANDING OF HOW DRUGS WORK
IN WOMEN AND THEN THE SIDE
EFFECTS ASSOCIATED WITH WHATEVER
DRUGS ARE BEING USED.
SO WE NEED TO HAVE A BETTER
UNDERSTANDING OF THOSE THINGS,
BUT IT REALLY STARTS BY MAKING
SURE WE ADDRESS THOSE BARRIERS
OF PARTICIPATION BY WOMEN IN
HEALTH RESEARCH.
NEXT SLIDE, PLEASE.
SO GETTING INCREASED
REPRESENTATION OF WOMEN AND MORE
WOMEN'S HEALTH DATA IS ONE PART
OF IT.
ALSO WE NEED TO DO A BETTER JOB
AT THE DATA SCIENCE AND POLICY
LEVEL.
WE NEED TO HAVE BETTER DATA
SCIENCE AND POLICY PRACTICES IN
PLACE.
FROM A DATA SCIENCE PERSPECTIVE,
ONE OF THE AREAS WE REALLY NEED
TO FOCUS ON IS DOING A BETTER
JOB AND BEING MORE INTENTIONAL
OF HAVING SYSTEMS IN PLACE TO
DISAGGREGATE THAT DATA.
THERE ARE VERY REAL DIFFERENCES
BETWEEN MEN AND WOMEN, MOST
NOTABLY BIOLOGICALLY AND PHY
PHYSIOLOGICALLY.
WE NEED TO HAVE A BETTER
UNDERSTANDING OF WHAT EFFECTS
ARE DRIVEN BY SEX.
THIS STARTS WITH DISAGGREGATING
THE DATA TO SEE WHAT CORRELATES
WITH SEX.
MANY NUANCES, SELF-REPORTED
DATDATA
SOCIAL DETERMINANTS OF HEALTH.
WE HEARD THAT.
MOST OF THESE THINGS ARE
CAPTURED THROUGH REAL-WORLD
EVIDENCE.
THIS DATA EXISTS.
SOME IS STRUCTURED, SOME
UNSTRUCTURED.
WE NEED TO DO A BETTER JOB OF
USING IT.
FROM A DATA POLICY PERSPECTIVE,
IT CAN BE A KEY -- BY HAVING
DATA POLICIES IN PLACE,
INCREASED COMMERCIALIZATION OF
DATA AND INFORMATION RESOURCES
IT IS SAFE TO SAY DATA HAS
ARGUABLY BECOME THE NUMBER ONE
COMMODITY IN THE WORLD TODAY.
WITH THAT COMES IMMENSE
EXPLOITATION AND THEN ISSUES OF
TRUST.
RIGHT?
IN TERMS OF WHO IS GOING TO
PROFIT THAT?
HOW IS THAT GOING TO BE USED?
HAVING STRONG DATA PRIVACY,
PROVENANCE, WHO FUNDAMENTALLY
OWNS IT AND THEN ACCESS
AUTHORIZATION POLICIES.
SO HAVING THOSE STRONG POLICIES
IN PLACE ARE GOING TO BE
CRITICAL TO BEING ABLE TO
UTILIZE OR BETTER UTILIZE
EXISTING DATA BUT INCREASE
PARTICIPATION IN WOMEN OR ANY
POPULATION QUITE FRANKLY IN THE
RESEARCH TO FOLLOW THAT WOULD
GENERATE NEW DATA.
WE NEED TO DO A BETTER JOB OF
THAT.
MORE DATA IS GOOD AND NEEDED,
BUT WE'VE GOT TO DO A BETTER JOB
OF USING EXISTING DATA.
NEXT SLIDE, PLEASE.
SO I JUST WANTED TO SORT OF
ILLUMINATE SOME OF THE AREAS OF
DATA INNOVATION TO ADVANCE
PRECISION HEALTH IN WOMEN.
WE LOOK AT DATA INFRASTRUCTURE.
SOME OF THE INNOVATIONS NEEDED
THERE REALLY STANDARDIZATION AND
INTEGRATED, MORE STANDARDIZED
AND INTEGRATED HEALTH
INFRASTRUCTURE.
INFRASTRUCTURE THAT INCORPORATE
GE GENOMICS, PRIVACY BANK
FRAMEWORKS TO ENSURE ETHICALLY
SOURCED DATA AND SHARING.
THIS IS GOING TO ENABLE MORE
ACTIONABLE INSIGHTS AND ENHANCE
THE OVERALL QUALITY OF WOMEN'S
HEALTH CARE RESEARCH AND THEIR
INCLUSION IN RESEARCH TO BEGIN
WITH.
FROM AN ANALYTIC STANDPOINT, WE
NEED TO GET MORE REAL-WORLD
EVIDENCE INTO THE DATA MODELS.
AND THEN WE CERTAINLY NEED, AS
WE ARE SEEING ACROSS ALL OF
RESEARCH, TO GET MORE APPLIED AI
INTO RESEARCH AND START TO
GENERATE PREDICTIVE MODELS BASED
ON THE INCREASED DIMENSIONALITY
OF THIS DATA AND THESE MODELS
THAT ARE GENERALIZABLE, MORE
ROBUST AND THAT CAN DO A BETTER
JOB OF PREDICTING RISK OUTCOME,
THERAPEUTIC RESPONSE AND THOSE
TYPES OF THINGS.
THAT IS WHERE WE HAVE SOME
INNOVATION AROUND THE ANALYTICS.
ENGAGEMENT.
SO AGAIN, THIS IS REALLY
SOMETHING THAT I THINK THE STATE
WISHES NADPH, AS WE DO THINGS
LIKE DATA SCIENCE DEVELOPMENT
AND TECHNOLOGY AND
IMPLEMENTATION, WE WORK FROM AN
INCLUSIVE MODEL WHERE WE ARE
CO-DESIGNING DEVELOPING THOSE
THINGS.
FROM AN ENGAGEMENT STANDPOINT WE
HAVE TO HAVE MORE INCLUSIVE
GOVERNANCE AND USER CENTERED
APPROACHED TO DOING EVERYTHING.
THAT GOES FROM HOW WE DESIGN AND
IMPLEMENT REMOTE MONITORING
DEVICES.
TO HOW WE DESIGN STUDIES AND
DEVELOP AI SYSTEMS AND
INFRASTRUCTURE.
I TALKED ABOUT THE POLICY, SO
PRIVACY AND REGULATORY
FRAMEWORKS THAT INCENTIVIZE AND
SUPPORT PRECISION HEALTH CARE,
THOSE ARE THINGS THAT NEED TO
COME ON TO LINE, BUT WE ALSO
REALLY NEED TO MAKE SURE THAT
WOMEN ARE INVOLVED IN THAT
PROCESS.
SO I'M GOING TO STOP THERE.
I THINK THAT REALLY PAINTS THE
PICTURE.
THERE ARE KEY AREAS WE NEED TO
INNOVATE AND MAKE SURE WOMEN ARE
INCLUDED IN THAT.
I THINK WE SHOT PAST.
IF WE GO BACK.
THOSE AREN'T MY SLIDES.
>> I CAN STOP SHARING AND DO YOU
WANT TO RESHARE?
>> SURE.
>> YEAH, ERIC, IF YOU CAN POP IT
BACK UP ON 99.
>> THERE WE GO.
ALL RIGHT.
THANK YOU.
SO HERE I JUST WANTED TO POINT
OUT SOME AREAS WHERE WE CAN DO A
BETTER JOB OF WORKING WITH THE
WOMEN'S COMMUNITY TO INVOLVE
THEM IN SOME OF THE INNOVATION
AROUND AI AND DATA TO EMPOWER,
IMPROVE WOMEN'S HEALTH.
SO YOU ARE LOOKING AT A COUPLE
OF AREAS, PARTICIPATORY DATA
GOVERNESS, I TALKED ABOUT IT IN
PREVIOUS SLIDE.
HAVING COMMUNITY-LED OVERSIGHT
FRAMEWORKS IS REALLY, REALLY
CRITICAL.
CAN'T STRESS THIS ENOUGH.
THIS IS GOING TO BUILD TRUST.
I TALKED ABOUT BARRIERS TO
ACCESS AND PARTICIPATION.
WHEN YOU HAVE THOSE GOVERNANCE
MODELS THAT ENGENDER TRUST YOU
DO BETTER AT GETTING INCLUSION
OF WOMEN OR ANY RESEARCH
PARTICIPANT IN A STUDY FOR THAT
MATTER.
THESE ARE JUST SOME AREAS RIGHT
HERE AND BECAUSE WE HAVE A
LITTLE GAP HERE, I WANT TO PICK
UP ON SOME TIME HERE.
SO I'M GOING TO GO TO THE NEXT
SLIDE, IF YOU COULD.
ALL RIGHT.
AND SO AGAIN, THE TAKE HOME IS
HOW DO WE EMPOWER THE
POPULATION.
MEANING IN AN INTENTIONAL WAY
HAVING THAT POPULATION, IN THIS
CASE WOMEN, BEING INVOLVED IN
DIRECTLY GUIDING THE RESEARCH
AND INNOVATION PROCESS AND
HAVING THESE COMMUNITY-LED
STRUCTURES TO REALLY STEWARD
EVERYTHING THAT IS HAPPENING TO
ENSURE THAT THOSE OUTCOMES ARE
RELEVANT, RIGHT?
AGAIN, HAVING TRANSPARENCY
THROUGHOUT THE LIFE CYCLE ACROSS
ALL OF THE FRAMEWORKS AND THOSE
ARE CRITICAL TO ENGENDERING
TRUST AND MAKING SURE THERE ARE
MINIMAL BARRIERS TO WANTING TO
PARTICIPATE IN THE RESEARCH TO
BEGIN WITH.
# IF WE GO TO THE NEXT SLIDE.
I WANTED TO POINT OUT CRITICAL
AREAS IN WOMEN'S HEALTH WHERE
THERE ARE DATA GAPS AND AI
INNOVATION.
INADEQUATE REPRESENTATION,
FRAGMENTS RECORDS, LIMITED
LONGITUDINAL AND REAL WORLD
EVIDENCE.
THESE ARE GOOD FOR AI.
I WILL TOUCH ON THE TWO AREAS OF
AI WE ARE MOST FAMILIAR WITH,
WHEN WE LOOK AT MACHINE LEARNING
THIS IS A TREMENDOUS OPPORTUNITY
TO START TO TRAIN AND DEVELOP
ALGORITHMS ON MORE INCLUSIVE AND
REPRESENTATIVE DATA THAT CAN DO
A BETTER JOB OF PREDICTING
OUTCOME RISK, THERAPEUTIC
RESPONSE.
THIS CAN POSITIVELY IMPACT ANY
NUMBER OF THESE THINGS.
NADPH WE ARE DOING THIS IN POST
PARTUM DEPRESSION AND A NUMBER
OF OTHER AREAS.
ALSO USING ALGORITHMS OR
DEVELOPING ALG RITS THAT
INCLUDES ELECTRONIC HEALTH
RECORD DATA, WEARABLE, CLINICAL
AND MOLECULAR DATA AS WE GET TO
A MORE MULTIDIMENSIONAL DATA
SET, TRAINING THESE MODELS ARE
GOING TO LEAD TO MUCH MORE OR
TRAINING THESE ALGORITHMS ON
MULTS DIMENSIONAL DATA SETS WILL
LEAD TO MUCH MORE ROBUST MODELS
AND WE SHOULD EXPECT PREDICTIONS
TO BE MORE GENERALIZABLE AND
INCREASED ACCURACY.
THE GENERATIVE AI, SO THIS IS AN
OPPORTUNITY TO START TO SCAN
MASSIVE VOLUMES OF MEDICAL DATA,
CLINICAL GUIDELINES, TRIAL DATA
AND REALLY IDENTIFY GAPS IN
EVIDENCE AND MAYBE CONFLICTING
POLICIES AND PRACTICES IN
WOMEN'S HEALTH, RIGHT?
THAT WILL REALLY HELP US DRIVE
TOWARD STANDARDIZATION.
AGAIN, SO THAT EVERYTHING THAT
COMES FROM THAT WILL BE MORE
REPRODUCEABLE AND ULTIMATELY
MORE ROBUST.
THESE ARE JUST TWO AREAS OR WAYS
THAT MACHINE LEARNING,
GENERATIVE AI CAN HELP INNOVATE
AROUND WOMEN'S HEALTH DATA AND
IMPROO
IMMOVE OUTCOMES.
>> I WILL GO TO THE NEXT SLIDE.
>> THANK YOU, DR. CARLISLE.
IF YOU CAN BRING IT TO A CLOSE.
>> THIS IS THE LAST SLIDE.
SO WHAT ARE WE DOING TO SORT OF
PUT OUR TEETH INTO THIS?
AND SO WE HAVE BEEN VERY ACTIVE
IN BUILDING COMMUNITY DATA,
ECOSYSTEM.
THIS IS JUST THREE EXAMPLES OF
THE WORK WE'VE DONE IN THIS
SPACE AND SO THE PROJECT IN
SUPPORT OF RWJF FOCUSING ON
DEVELOPING RECOMMENDATIONS FOR
EQUITABLE, ACCESSIBLE AND
ACTIONABLE COMMUNITY DATA
SYSTEMS.
IN THIS WORK WE IMPROVED
ENGAGEMENT AND HELPED INFORM
STRATEGIES TO ADDRESS HEALTH
STRATEGIES.
IN SUPPORT OF THE CDC THIS
PROGRAM INVOLVED GATHERING
COMMUNITY PERSPECTIVES ON THE
USE OF SURVEY DATA.
MOST NOTABLY PLACES TO HELP
IMPROVE HEALTH OUTCOME AN
LEVERAGE COMMUNITY INSIGHTS,
LASTLY, OVER THE PAST YEAR AND A
HALF WE HAVE BEEN ACTIVE IN
CREATING THIS NATIONAL ECOSYSTEM
AROUND MATERNAL HEALTH AND HAD
THIS NATIONAL TOWN HALL TO
REALLY ENGAGE AT A COMMUNITY
LEVEL PEOPLE IN MATERNAL HEALTH
SPACE TO DEVELOP INITIATIVES TO
ADDRESS POST PARTUM DEPRESSION.
ON THAT NOTE, I WILL STOP AND
THANK YOU.
>> THANK YOU SO MUCH, DR.
CARLISLE.
WE WILL NOW HERE FROM DR. LIAT
SHENHAV.
DOCTOR SHENHAV IS IN THE
DEPARTMENT OF MICROBLOLG AT THE
GROSSMAN SCHOOL OF MEDICINE
COMPUTER SCIENCE AT THE
INSTITUTE FOR MATH MAT SCIENCES
AND THE CENTER OR DATA SCIENCE.
THE PRINCIPLE INVESTIGATOR OF
THE SHENHAV LAB TO IMPROVE THE
HEALTH OF WOMEN AND CHILDREN
WITH FOCUS ON FERTILITY,
PREGNANCY AND LACTATION.
BEFORE JOINING NYU, DR. SHENHAV
WAS AT ROCKEFELLER UNIVERSITY.
SHE HAS A PH.D. IN COMPUTER
SCIENCE FROM THE UNIVERSITY OF
CALIFORNIA LOS ANGELES.
WELCOME DR. SHENHAV.
>> THANK YOU SO MUCH FOR THIS
KIND INTRODUCTION.
AND THANK YOU FOR THE
OPPORTUNITY TO PRESENT MY WORK
IN FRONT OF YOU TODAY.
I'M LIAT SHENHAV.
I'M ASSISTANT PROFESSOR AT THE
INSTITUTE FOR SYSTEMS GENETICS,
MICROBIOLOGY, OB/GYN AND
COMPUTER SCIENCE AT NYU.
MY SLOGAN IS FROM CODE TO CARE.
I WANT TO INTRODUCE WHAT WE DO,
THE SHENHAV LAB, FOCUSED ON
TECHNOLOGY DEVELOPMENT AND
TRANSLATION.
WE KNOW THE BIOLOGICAL CLINICAL
PHENOMENAS WE ARE INTERESTED IN
ARE DYNAMIC, BUT THEY ARE ALSO
OCCURRING IN DIFFERENT ORGAN
SYSTEMS.
THEY WILL HAVE IMPRINTS ON
DIFFERENT MODALITIES,
MICROBIOMES AND RHETTAL IMAGING,
YOU WOULD BE SURPRISED.
WE ALSO VERY MUCH INTERESTED IN
WORKING WITH CLINICAL DATA TO
COMPLETE THIS PICTURE OF OMIX
AND IMAGING.
THE BIG BULK OF OUR WORK IS
HAPPENING HERE IN MODELLING
STAGE.
MATHEMATICAL MODELS, AI MODELS
AND PACKAGE THEM IN END TO END
SOFTWARE THAT IS WHAT WE
PUBLISH.
OUR METHODOLOGY OR CONTRIBUTION
TO THE SCIENTIFIC COMMUNITY.
STATEMENT, WE ARE USING THESE
MODELS TO DRIVE DISCOVERY.
WE ARE BASICALLY USING THEM FOR
DATA ANALYSIS.
OFTENTIMES THE ORDER IS
REVERASED.
WE HAVE A PRESSING QUESTION FROM
THE DATA OR HYPOTHESIS, THERE IS
NO GOOD OFF THE SHELF TOOL, WE
DESIGN A MODEL AND WE PUBLISH IT
AS A ROBUST MODEL FOR THE ENTIRE
COMMUNITY TO USE BEYOND
ANSWERING THAT PARTICULAR
QUESTION OR ADDRESSING THAT
HYPOTHESIS.
A SECOND PIECE IS TRANSLATION.
WHEN WE'RE DEVELOPING THESE
MODELS WE HAVE SCALEABILITY,
SUSTAINABILITY, CLINICAL
IMPLEMENTATION IN MIND SO THIS
IS HOW WE ARE THINKING ABOUT IT
FROM THE INITIATION OF OUR
RESEARCH PROJECT AS WELL AS THE
MODELLING STEPS.
NOW WE ARE NOT DOING THAT.
THIS CAN LOOK VERY GENERAL.
THIS IS RELEVANT TO A LOT OF
HUMAN CONDITIONS.
WHAT WE ARE FOCUSED ON IS WOMEN
AND CHILDREN'S HEALTH FROM
FERTILITY TO EARLY LIFE SO WE
HAVE PROJECTS AROUND FERTILITY,
PREGNANCY, WHERE WE MOSTLY FOCUS
ON DIAGNOSING PREGNANCY
DISORDERS FROM FIRST TRIMESTER
INFORMATION.
TODAY I WANT TO FOCUS ON
LACTATION AND EARLY LIFE, THAT
SYNERGY BETWEEN MOTHER AND
CHILD.
I WANT TO FOCUS ON HUMAN MILK
COMPOSITION, INFANT HEALTH AND
INFANT MICROBIOME DEVELOPMENT.
I DON'T KNOW IF IT NEEDS AN
INTRODUCTION AT THIS POINT, THE
MICROORGANISMS THAT LIVE IN AND
ON OUR BODY.
AS WE SPEAK AND THEY INOCULATE
OUR BODIES EARLY IN LIFE.
SO STARTING BIRTH AND IN TERMS
OF THE NUMBERS YOU SEE HERE,
MICROBES OUTNUMBER THE HUMAN
CELLS, IT IS A DEBATE OF 1RKS X
OR 10X.
30 MILLION MICROBES ARE IN OUR
BODY AS WE SPEAK.
THE COOL THING ABOUT THE HUMAN
MICROBIOME CHANGES AND CAN
INDICATE OR CAUSE DISEASE.
BUT AT THE SAME TIME, IT IS
MODIFIABLE AND A MODALITY TO USE
TO INTERVENE IN A PRETTY
STRAIGHT FORWARD WAY.
WE HAVE PUBLISHED QUITE
EXTENSIVE WORK ON THE HUMAN
MICROBIOME ON THE FOCUS ON WOMEN
AND CHILDREN'S HEALTH.
I WANT TO FOCUS ON A PAPER WE
PUBLISHED IN CELL, LATER IN
2024, WHERE WE TIMED TOGETHER
THE HUMAN MICROBIOME AND HUMAN
MILLION K.
WHY ARE WE TYING THEM TOGETHER?
THIS IN 2018 THERE WAS A PAPER
IN "NATURE" FROM THE TEDDY STUDY
THAT GAVE THE BEST ANALOGY OF
WHAT THE EARLY LIFE MICROBIOME
IS.
IT IS A SECURITY BLANKET.
IN 2024, WE KIND OF EXTENDED OR
EXTENDED UPON THAT VIEW OF THE
HUMAN MICROBIOME AS A SECURITY
BLANKET AND TYING HUMAN MILK
INTO THAT.
WHAT YOU SEE ON THE RIGHT IS BY
FAR BREAST MILK IS THE MOST
IMPORTANT DETERMINANT OF THE
HUMAN MICROBIOME.
LET'S DIVE INTO BREAST FEEDING
AN HUMAN MILK FOR A MINUTE.
HUMAN MILK WAS DEFINED OR
DESCRIBED AS A SUPERFOOD, BABY'S
FIRST VACCINE, PERSONALIZED
MEDICINE, TAILOR MADE FOR TINY
HUMANS.
SCIENTIFICALLY WE DON'T KNOW
ENOUGH ABOUT HUMAN MILK SO WE
ARE USING THESE CUTE PHRASES TO
DESCRIBE IT.
WHAT WE DO KNOW IS IT IS VERY
DIFFERENT IN COMPOSITION FROM
FORMULA.
WE KNOW THE STATISTICS OR THE
EPIDEMIOLOGY THAT IN SOME
COUNTRIES UP TO 20% OF CHILD
MORTALITY IS CAUSE BY SUBOPTIMAL
BREAST FEEDING.
THAT WAS TRUE IN 2013.
IN OTHER SETTINGS BETWEEN 15 TO
72% REDUCTION IS AT LEAST
REPORTED IN A REALLY WIDE
VARIETY OF DISEASES FROM TYPE 1
DIABETES TO OBESITY AND
RESPIRATORY TRACT INFECTION THAT
IS RELATED TO BREAST FEEDING AND
HUMAN MILK.
THE KIND OF GAP WE HAVE ARE WHAT
ARE THE UNDERLYING BIOLOGY, THE
PROTECTED MECHANISMS THAT ALLOW
FOR THESE DRAMATIC REDUCTIONS
AND PROTECTION?
THAT IS WHAT WE ARE INTERESTED
IN.
AS A COMPUTER SCIENTIST AND
SOMEONE WHO IS OBSESSED WITH
TIME SERIES AND DYNAMICS, THAT
IS HOW I VIEW LACTATION.
IN MY MIND IT IS A DYNAMIC
PROCESS.
NOT JUST IN MY MIND, IN NATURE'S
MIND.
IT STARTS IN EARLY DAYS IN THE
CLOS ROM, TRANSITIONS IN
TRANSITIONAL MILK AND MATURES
THROUGH THE LACTATION PERIOD.
THERE ARE NUANCED CHANGES
HAPPENING IN TEMPORALLY
STRUCTURED BLOCKS.
MILK IS NOT A STAND ALONE
LIQUID.
IT IS A TRIAD.
THAT IS COMPOSED OF THE INFANT,
THE MOTHER, AND THE MILK.
MATERNAL PHYSIOLOGY CHANGES POST
PARTUM AND DURING LACTATION
PERIOD.
THE INFANT NEEDS CHANGES AND AS
A RESPONSE HUMAN MILK CHANGES.
SO I WILL GIVE YOU A CARTOON
EXAMPLE THAT HUMAN MILK
ANTIBODIES CHANGES OVER THE
COURSE OF LACTATION.
THE COMPLEX SUGARS, THE COMPLEX
GLYCENS ARE CHANGING IN
COMPOSITION AND ABUNDANCE OVER
TIME.
EVEN THE MILK MICROBES ARE
CHANGING OVER TIME.
THIS IS A VERY SMALL EXAMPLE OF
THE COMPONENTS, ARE INTERACTING
WITH ALL OF THE INFANT CELLS AND
SYSTEMS AND ORGANS.
WHAT WE ARE REALLY INTERESTED IN
THIS CONTEXT IS THE INTERACTION
WITH THE INFANT MICROBIOME, GUT
MICROBIOME NASAL AND AIRWAY
MICROBIOME AND COMBINATION OR
INTERACTION BETWEEN TWO DYNAMIC
AND COMPLEX SYSTEMS AT THE END
OF THE DAY LEADING TO SMALL SET
OF PHENOTYPES AND ASTHMA, YES OR
NO AT AGE 3 OR AGE 5?
OBVIOUSLY IT IS MUCH MORE
COMPLICATED THAN THAT.
THE PHENOTYPE OR CLINICAL
REPRESENTATION IS MORE SIMPLE
THAN THE PROCESS THAT WAS
LEADING TO IT.
SO IN ORDER TO START THINKING
ABOUT THIS, WE NEED VERY RICH
TYPE OF DATA.
SO WE HAVE PARTNERED WITH THE
CHILD COHORT STUDY.
MY PARTNERS HAVE GENERATED THIS
AMAZING RESOURCES OF COHORT
STUDY.
THEY COLLECTED DATA FROM 3,500
FAMILIES FROM MID PREGNANCY INTO
EARLY ADOLESCENTS THEY ARE STILL
COLLECTING DATA AND HAVE
BIOLOGICAL SAMPLES AT BIRTH, 3
MONTHS, 12 MONTHS.
THEY HAVE COLLECTED AT 5 AND 8
YEARS, THEY HAVE COLLECTED NASAL
SWABS AND POOP SAMPLES SEQUENCED
TO LOOK AT MICROBIOME
COMPETITION AND HUMAN MILK
COMPOSITION AT 3 MONTHS OF AGE.
IN ADDITION TO THESE AMAZING
BIOLOGICAL SAMPLES WE HAVE
EXTENSIVE INFORMATION ABOUT
PRENATAL EXPOSURE AND POST NATAL
EXPOS
EXPOSURE, HOME ENVIRONMENT,
NUTRITION, VIRAL INFECTION,
MATERNAL STRESS, NUTRITION, ET
CETERA, AND ALL THE CLINICAL
OUTCOMES OF THESE CHILDREN UNTIL
AGE 8 AND BEYOND.
SO WHAT I BASICALLY SAID BEFORE
IS WE KNOW THAT BREAST FEEDING
IS REDUCING THE RATES OF
INFECTIONS, ALLERGIES ASTHMAs
AND MUCH MORE.
THE MECHANISMS ARE NOT KNOWN.
ONE OF THE QUESTIONS WE CAN ASK
WITH THE CHILD COHORT STUDY ARE
THE GUT NASAL MICROBES INVOLVED
IN THIS PROTECTION?
ARE THEY PART OF THE UNDERLYING
MECHANISM?
WE HAD THIS THEE AXES
HYPOTHESIS.
WE KNOW THE MICROBIRKS IOME IS
ASSOCIATED WITH RESPIRATORY
HEALTH AND BREAST FEED IS
ASSOCIATED WITH RESPIRATORY
HEALTH AND CAN WE START
INFERRING A THREE-WAY ACCESS OR
SOMETHING POTENTIALLY MORE
CAUSAL?
WHAT WE HAVE DONE IS THE
FOLLOWING.
WE STARTED THINKING IN A
SLIGHTLY DIFFERENT WAY ABOUT THE
MICROBIOME BRINGING IT BACK TO
LACTATION AS A PROCESS, THE
HUMAN MICROBIOME IS A DYNAMIC
PROCESS.
HERE YOU SEE TWO
ILLUSTRATIONINGS OF A POTENTIAL
BENEFICIAL ENVIRONMENT OF THE
NASAL MICROBIOME COMMUNITY AND
AT THE BOTTOM YOU SEE A
COMPROMISED DEVELOPMENT.
WHAT I REALLY WANT YOU TO GET
OUT OF THIS IS NOT WHICH
BACTERIA IS THERE, WHICH MICROBE
IS THERE.
THE NAMES THE LEGEND DON'T
MATTER.
WHAT MATTERS IS THE TIMING.
THE BLUE GUY IN BENEFICIAL
DEVELOPMENT IS BEEN INTRODUCED
AROUND 5 MONTHS OF AGE.
HERE IT IS INTRODUCED IN THE
FIRST TWO WEEKS.
THAT'S AN IMPORTANT INFORMATION.
SO WHAT WE ARE CLAIMING HERE AND
HERE NOW IS JUST AN OBSERVATION
ABOUT THE MICROBIOME, THAT IT IS
ABOUT TIMING, THE SAKE MICROBE,
MAY BE BENEFICIAL ONE YEAR BUT
NOT INTRODUCED EARLIER IN LIFE.
AND THEN KIND OF STARTING TO
THINK TOWARDS MECHANISM, WHAT IS
THE ROLE OF HUMAN MILK IN
ORCHESTRATING THIS ORDER?
IS IT ANY WAY A PACEMAKER OF
THESE MICROBIAL DYNAMICS?
SO WHAT WE'VE DONE IS WE
STARTED -- WE HAVE RICH ENOUGH
DATA IN BOTH THE NASAL AND THE
GUT SO WE CAN CHARACTERIZE IT
BASED ON COLONIZATION PATTERNS.
WHICH MICROBES COLONIZE EARLY.
THAT IS WHAT YOU SEE IN PINK.
THEY ARE PRESENT IN THE 3 MONTH
SAMPLE: THEY ARE PRESENT AT THE
3 MONTHS, ONE YEAR SAMPLE AND
WHICH MICROBES ARE LATE
COLONIZERS.
THEY ARRIVE LATER.
THE INTERESTING FIT AND I'M
SKIPPING A FEW STEPS BETWEEN
THIS SLIDE AND THE NEXT, IS THAT
THESE COLONIZATION PATTERNS AND
THE ORDER AND TIMING OF MICROBES
WAS CRUCIAL TO UNDERSTAND THE
ETIOLOGY OR CONTRIBUTION OF THE
MICROBIOME HUMAN MILK TO
PRESCHOOL ASTHMA.
WHAT WE FOUND THAT THESE
MICROBIOME TRA GENETICRIES, THE
COLONIZATION PATTERNS AS WELL AS
HUMAN MILK COMPONENTS CAN
PREDICT PRESCHOOL ASTHMA.
WE HAVE APPLIED MACHINE LEARNING
AND BENCHMARKED AND LOOKED
RESOLUTIONS OF OUR DATA.
WE LOOKED AT ONE SNAPSHOT.
CAN WE USE THE 3 MONTHS DATA?
THE ONE YEAR DATA?
H THE ANSWER, IT IS NOT VERY
INFORMATIVE.
WHEN WE LOOK AT THE TRA
SECRETORIES, HOW THESE
COMMUNITIES CHANGE OVER TIME IN
BOTH THE NASAL AND THE GUT WE
WERE ABLE TO GET TO RELATIVELY
HIGH ACCURACY.
WHEN THE ADDED MILK COMPONENTS
ON TOP OF THESE TRAJECTORIES WE
GOT TO REALLY IMPRESSIVE
ACCURACY.
WHEN WE INTERROGATED THE
COMPONENTS OF THIS MODEL AND THE
CONTRIBUTION OF THESE COMPONENTS
TO THE MODEL ACCURACY, WHAT
WE'VE SEEN WAS VERY INTERESTING.
I'M NOT EXPECTING YOU TO DIGEST
ALL THIS INFORMATION IN THE
SLIDE, BUT I WANT TO HIGHLIGHT A
FEW THINGS.
MILK COMPONENTS WERE THE TOP
CONTRIBUTING AMONG FOR THESE
MODELS AND SPECIFIC MILK
COMPONENTS WERE CONTRIBUTING TO
THE ACCURACY OF THESE MODELS AS
WELL AS A SPECIFIC MIKE ROBES IN
BOTH THE GUT AND THE NASAL
COMMUNITIES THAT WERE LATER
COLONIZERS IN INFANTS THAT WERE
BREAST FED.
SO WHAT WE REALLY CAPTURE HERE
ARE THE TEMPORAL PATTERNS OF
THESE MICROBES THAT WERE
REFLECTED IN OTHER ANALYSES WE
HAVE DONE.
SO WE GOT THIS REINFORCEMENT
THEY ARE ACTUALLY PREDICTIVE.
AGAIN, A LOT OF INFORMATION IN
THIS SLIDE, BUT WHAT WE'VE TRIED
TO WALK IN THE PATH OF
ASSOCIATION.
WE ARE DATA SCIENTISTS BUT CAN
WE GO TO CAUSALITY.
WE ARE TRYING TO LOOK AT THE
DIRECT EFFECT OF BREAST FEEDING
AT 3 MONTHS ON ASTHMA AT THREE
YEARS ACCOUNTING FOR
CO-VARIATES.
WHEN YOU REMOVE THE INDIRECT
EFFECTS ON THE SLIDE, IT IS
SIGNIFICANT.
WHEN YOU ARE ADDING THE INDIRECT
EFFECT AND SPECIFICALLY THE
TRAJECTORY OF THE NASAL AND GUT
MICROBIOME, THIS DIRECT EFFECT
IS NO LONGER SIGNIFICANT AND
INDIRECT EFFECTS ARE ACTUALLY
SIGNIFICANT.
FROM THAT, WE WERE ABLE TO
EXTRAPOLATE AND SAY HUMAN MILK
ACTS AS A PACEMAKER.
IT REL LATERS THE MICROBIAL
COLONIZATION POTENTIALLY AN
IMPORTANT MECHANISM RELEVANT FOR
THE PROTECTION FROM ASTHMA AT
THREE YEARS.
IF I NEED TO SUMMARIZE WHAT I
HAVE SHOWN YOU THUS FAR IS THAT
WE HAD DATA ON THE NASAL AND GUT
MICROBIOMES FOR OVER 2,000
INFANTS IN THE FIRST YEAR OF
LIFE SWELL FINE GRAIN OF
MOLECULAR CHARACTERIZATION OF
THEIR MOTHER'S MILK.
AND WHAT WE KNOW FROM AGAIN EP
DEEMOLOGY EXCLUSIVE HUMAN MILK
IS LOWERING THE RISK OF
PRESCHOOL ASTHMA, ASTHMA AT 3
YEARS.
EARLY WEANING AND INTRODUCTION
TO FORMULA IS INCREASING THAT
RISK BUT WE DON'T KNOW WHY.
WHAT WE HAVE SHOWN HERE IS
BREAST FEEDING INFANTS FOR
LONGER THAN THREE MONTHS OF AGE
IS AIDING IN GRADUAL
MICROBIOMES.
THAT ROLE OF PACEMAKER HUMAN
MILK IS ORCHESTRATING WHERE
EARLY WEANING ACCELERATE A
PREMATURE GAIN OF SPECIES AND
FUNCTIONS ASSOCIATED WITH HIGHER
RISK OF PRESCHOOL ASTHMA.
SO IN.
>> THANK YOU, DR. SHENHAV.
IF YOU CAN WRAP UP, PLEASE.
>> YES, YES.
I JUST WANT TO SAY HERE WE SHOW
THE TIMING IS EVERYTHING.
BUT ONE MORE SENTENCE ABOUT
HUMAN MILK.
THE ECONOMISTS JUST CALLED HUMAN
MILK A COUPLE OF MONTHS AGO
LIQUID GOLD, BUT ACKNOWLEDGED WE
KNOW MORE ABOUT WHAT IS IN A
TOMATO OR WINE THAN BREAST MILK.
WE ARE TRYING TO CHANGE THAT.
BRINGING TOGETHER
CHARACTERIZATION WITH DATA
SCIENCE TO UNDERSTAND MATERNAL
AND INFANT HEALTH AND WITH THAT,
I WILL CONCLUDE.
THANK YOU SO MUCH.
>> THANK YOU DR. SHENHAV.
WE WILL HEAR FROM DR. PILAR
OSSORIO.
PROFESSOR OF LAW AND BIOETHICS
AT THE UNIVERSITY OF WISCONSIN.
AN INVESTIGATOR AND HEAD OF THE
ETHICS PROGRAM AT THE --
INSTITUTE OF RESEARCH.
GOVERNANCE AND ETHICS INVOLVING
HUMANS AND USES OF RACE AND
ETHNICITY.
SHE DIRECTED THE ETHICS
CONSULTATION SIFS THAT SERVES
UNIVERSITY OF WISCONSIN.
SHE SERVED ON THE SECRETARY'S
ADVISORY COMMITTEE FOR HUMAN
PROTECTIONS AND NATIONAL HUMAN
GENOME COUNCIL.
THE NATIONAL HEART LUNG AND
BLOOD ADVISORY COUNCIL, ADVISORY
TO THE NIH DIRECTOR, SEVERAL
COMMITTEES FOR THE NATIONAL
ACADEMIES OF SCIENCES,
ENGINEERING AND MEDICINE AND
TWIZRY COMMITTEES FOR HEALTH
CANADA.
WELCOME, DOCTOR PILAR OSSORIO.
>> WE ARE NOT ABLE TO HEAR YOU
YET, PILAR.
IT LOOKS LIKE YOU MAY STILL BE
MUTED.
PERHAPS ONE OF OUR IT FOLKS CAN
HELP US PROBLEM SOLVE.
DR. OSSORIO, I WILL SEND YOU THE
PHONE INFORMATION IF YOU WANT TO
TRY TO CALL IN I WILL SEND THAT
TO YOU IN E-MAIL.
THANKS, EVERYONE, FOR YOUR
PATIENCE WHILE WE WORK ON
GETTING DR. OSSORIO UNMUTED.
JEROME OR PHILLIPE, I DON'T KNOW
IF EITHER OF YOU CAN OFFER
SUGGESTIONS?
>> I'M SORRY, SAY THAT AGAIN.
THIS IS JEROME.
>> HI, JEROME.
DR. OSSORIO IS NOT ABLE TO
UNMUTE.
>> OKAY.
I CANNOT UNMUTE HER AT THE
MOMENT.
>> SHE IS TRYING TO DIAL IN.
>> SHE DIALED IN?
>> SHE IS TRYING TO NOW, YEAH.
>> OKAY.
AND HOPEFULLY THIS WILL WORK.
CAN YOU TRY TO UNMUTE NOW.
JEROME, SHE IS IN BY FUNNY.
>> CAN YOU HEAR ME?
>> WE CAN HEAR YOU.
>> WAIT, DID WE LOSE HER.
>> WE MAY HAVE LOST YOU.
WE HEARD YOU, BUT NOW WE'VE LOST
YOU.
WE'LL GIVE THIS IS TRY AGAIN.
YOU CAN CALL BACK IN.
150IGS
>> IS SHE JOINING AGAIN?
>> YEAH.
SHE IS COMING IN NOW.
AND I HAVE ALLOWED THE
MICROPHONE ON YOUR PHONE PILAR,
BUT YOU MIGHT NEED TO UNMUTE
MANUALLY ON YOUR PHONE.
YOU HAVE THE ABILITY TO UNMUTE.
>> ALL RIGHT.
CAN YOU HEAR ME NOW?
>> YES.
>> AWESOME.
OKAY.
HUGE APOLOGIES FOR THAT.
I DON'T KNOW WHY I AM MUTED.
HOLD ON HERE.
WOW.
THAT JUST TOOK SIX MINUTES AND
10 SECONDS.
OKAY.
I AM SO VERY PLEASED TO BE
SPEAKING WITH YOU TODAY WHERE I
WILL TALK ABOUT ETHICAL
BIOMEDICAL RESEARCH IN THE ERA
OF DATA-DRIVEN SCIENCE.
I WORK FOR TWO PHARMACEUTICAL
COMPANIES BUT I WON'T BE TALKING
ABOUT ANYTHING RELATED TO THEIR
PRODUCTS.
YOU HEARD ABOUT NIH DATA
RESOURCES, TODAY.
THIS IS MY CARTOON OF INDIVIDUAL
LEVEL HUMAN DATA.
AS THAT SHARING OFTEN OCCURS IN
NIH-FUNDED RESEARCH, SO KEY
POINTS HERE ARE THAT DATA SETS
ARE DEIDENTIFIED, THEN DEPOSITED
IN A REPOSITORY RUN BY NIH AND
SHARED WITH MANY RESEARCHERS
AROUND THE WORLD.
AT LEAST FOR THOSE OF US WHO
PRODUCE DATA, WE HOPE MANY
RESEARCHERS FIND OUR DATA USEFUL
AND WANT TO ACCESS IT.
INDIVIDUAL LEVEL HUMAN DATA FROM
NIH-FUNDED RESEARCH GENERALLY
ARE NOT FREELY AVAILABLE TO
ANYBODY.
INSTEAD USERS MUST BE
RESEARCHERS WHO ARE
AUTHENTICATED BY NIH AND WHO, AT
A MINIMUM, SIGN A CONTRACT
AGREEING TO TERMS AND CONDITIONS
FOR USING DATA.
THIS IS CALLED CONTROLLED
ACCESS.
HERE I DEPICTED DEIDENTIFIED
DATA IN THE REPOSITORY.
BY WHICH WE MEAN DATA STRIPPED
OF EXPLICIT IDENTIFIERS, NAMES,
ADDRESS OR SOCIAL SECURITY
NUMBERS.
I HAVE ALSO DEPICTED SECONDARY
USERS.
THESE ARE PEOPLE WHO HAVE NO
PART IN DESIGNING THE PROTOCOL
OR COLLECTING THE DATA, NO
CONTACT OR RELATIONSHIP WITH
RESEARCH PARTICIPANTS.
THEY ARE NOT INVOLVED IN GETTING
CONSENT FROM RESEARCH
PARTICI
PARTICIPANTS.
THEY USE OF DEIDENTIFIED DATA AT
LEAST IN THE UNITED STATES AND
MANY OTHER COUNTRIES IS NOT
REGULATED AS HUMAN SUBJECTS
RESEARCH.
UNDER THESE CIRCUMSTANCES, HOW
DO WE PROMOTE ETHICAL USE OF THE
DATA AND MINIMIZE RISK TO PEOPLE
WHO ARE REPRESENTED IN THE DATA
SET?
NEXT SLIDE, PLEASE.
TO DESCRIBE OUR RESPONSES TO
THESE CONCERNS WE ARE NOW USES
THE PHRASE RESPONSIBLE USE OF
DATA BY WHICH, WHEN I USE THAT
PHRASE, I MEAN USE THAT IS
ETHICAL, SCIENTIFICALLY HIGH
QUALITY, AND LEGAL.
AND TO ENCOURAGE RESPONSIBLE USE
WE NEED AN ENVIRONMENT OR
ECOSYSTEM THAT INCLUDES GOOD
GOVERNANCE BY THE RELEVANT
INSTITUTIONS AND RESPONSIBLE AND
RESPONSIVE SCIENTIFIC CULTURE OF
ETHICAL DATA USE.
GOVERNANCE REFERS TO DATA
MANAGEMENT PROCESSES AND
INSTITUTIONS THAT ESTABLISH THE
AUTHORITY FOR MAKING DECISIONS
ABOUT DATA AND HAVE TRANSPARENT
PARAMETERS AND PROCESSES FOR
MAKING THOSE DECISIONS.
RELEVANT GOVERNANCE INSTITUTIONS
ARE RESEARCH ORGANIZATIONS
UNIVERSITIES, BIOTECH COMPANIES,
NIH, INCLUDES RESPONSIBLE USE OF
DATA COMMITTEES IN LARGE
PROJECTS.
AND DATA REPOSITORY AND PROBABLY
OTHERS AS WELL.
SO TO DEVELOP AND RESPONSE OF
SCIENTIFIC CULTURE THAT FOCUSES
ON RESPONSIBLE DATA USE, WE NEED
TO COLLABORATE AND CONSULT WITH
A VARIETY DIFFERENT KINDS OF
EXPERTISE AND THOSE CERTAINLY
INCLUDE RESEARCH PARTICIPANTS OR
PERSPECTIVE PARTICIPANTS AND
THEIR COMMUNITIES.
SHOUTOUT TO DR. CARLISLE WHEN HE
WAS TALKING ABOUT THE ENGAGEMENT
WORK HIS GROUP HAS DONE.
RESPONSIBILITY DATA USE
CONSTITUTED TRUSTWORTHY BEHAVIOR
JUSTIFYING SOCIETY AND OUR
PARTICIPANT'S TRUST IF THEY
SHOULD DECIDE TO TRUST US.
ALL THE ACTORS IN THE
DATA-DRIVEN ECOSYSTEM HAVE SOME
RULE TO PLAY IN PROMOTING
RESPONSIBLE USE.
DATA PRODUCERS FOR INSTANCE NEED
TO CONSIDER THE IMPLICATIONS FOR
DATA SHARING FROM THEIR
PROJECT'S INCEPTION AND THROUGH
THE LIFE CYCLE OF THE PROJECT
AND THE DATA.
I'M NOT GOING TO LIST A PROCESS
OF RULES PEOPLE HAVE DEVELOPED
TO PROMOTE RESPONSIBLE USE.
THAT WOULD BORE YOU TO TEARS.
I WILL GIVE AN EXAMPLE.
DATA PRODUCERS HAVE AN
OBLIGATION TO KNOW THEIR OWN
RELEASED DATA SETS VERY WELL AND
WRITE DATA RELEASED VOTES TO
HELP NAVIGATE THE STRENGTHS,
WEAKNESSES AND QUIRKS OF THE
DATA.
EVERY DATA SET HAS WEAKNESSES
AND QUIRKS.
IT IS INEVITABLE.
NOBODY WILL KNOW THEM BETTER
THAN THE DATA PRODUCERS.
SO FOR INSTANCE, IN A DATA SET,
SOME VARIABLES MIGHT HAVE A FAIR
AMOUNT OF MISSING DATA.
IS THE MISSING NONRANDOM?
IF PEOPLE OF ONE SEX OR INCOME
LEVEL ARE SYSTEMATICALLY MISSING
MORE DATA, HOW DO WE ANALYZE THE
DATA TO REPORT RESULTS WITHOUT
DRAWING UNWARRANTED CONCLUSIONS?
DATA PRODUCERS SHOULD ALERT
USERS TO THESE ISSUES AND
POSSIBLY SELECT ANALYTICAL
APPROACHES FOR ADDRESSING THEM.
SECONDARY USERS ARE REQUIRES TO
READ THE DATA RELEASE NOTES.
IN MANY CASES SECONDARY DATA
USERS WILL USE SOME DATA NOT
VERY FAMILIAR WITH THAT TYPE OF
DATA AND HAVEN'T DONE ANALYSIS
USING THAT TYPE OF DATA IN THE
PAST.
THEY ARE OBLIGATES TO LEARN
APPROPRIATE AND RIGOROUS
ANALYSES AND THAT IS LEARNING
THE RELEVANT SOCIAL CONTEXT FOR
UNFAMILIAR VARIABLES.
FOR EXAMPLE, A SECONDARY
RESEARCHER WHO, FOR THE FIRST
TIME, ANALYZES DATA PERTAINING
TO PARTICIPANT'S SUBSTANCE USE
DISORDER, COULD WRITE A PAPER
USING STIGMATIZING LANGUAGE
AROUND SUD BECAUSE THE RESEARCH
DOESN'T REALLY KNOW BETTER.
STIGMATIZING LANGUAGE IN A
HIGHLY REGARDED PAPER COULD
REINFORCE SOCIAL STIGMA, CAUSING
RESEARCH PARTICIPANTS AND PEOPLE
LIKE THEM TO BE TREATED POORLY
IN SOCIETY AND PERPETUATING
THEIR MARGINALIZATION.
IT CAN PRODUCE DIRECT AND
INDIRECT INFORMATIONAL HARMS IF
DONE OUT OF IGNORANCE OR
CARELESSNESS.
SO DATA PRODUCERS HAVE A ROLE IN
HELPING WELL-MEANING SECONDARY
DATA USERS TO DO THE KIND OF
SCIENCE THAT THEY WANT TO DO,
THAT ACTUALLY PROMOTES SOCIAL
BENEFIT RATHER THAN CAUSING
HARM.
SOME TYPES OF DATA CARRY HIGHER
RISK.
FOR WOMEN IN POST ROE V. WADE
WORLD, IT COULD PUT US AT LEGAL
RISK IN SOME STATES AT SOME
TIMES.
IT BEHOOVES RESEARCHERS TO LEARN
ABOUT THESE RISKS AND DESIGN
SECONDARY ANALYSES IN WAYS THAT
MITIGATE THESE RISKS.
ONE WAY IS MAINTAINING DATA
CONTRIBUTORS' ANONYMITY AND
PRIVACY.
PRIVACY IS AN INSTRUMENTAL VALUE
BECAUSE IT HELPS PROTECT PEOPLE
FROM DATA-RELATED RISK AND HARM.
IT IS ALSO A NON-INSTRUMENTAL
VALUE IN SO FAR IT IS A
COMPONENT OR CONSTITUENTS OF
PEOPLE'S AUTONOMY, THEIR
IDENTITY DEVELOPMENT AND THEIR
FLOURISHING.
I GUESS AT THIS POINT YOU MIGHT
SAY YOU MIGHT WONDER WHY IT
MATTERS WHY WE PROTECT PEOPLE'S
DATA?
DR. HILL PROVIDED AN EXCELLENT
EXPLANATION FOR WHY IT MATTERS
AND I WILL BRIEFLY REITERATE
DATA DEIDENTIFICATION IS NOT A
PERFECT OR ALL OR NOTHING
CHARACTERISTIC OF DATA.
DATA CAN BE MORE OR LESS
IDENTIFIED AND ANY DATA SET
WHERE THERE ARE MANY VARIABLES
OR FEATURES FOR EVERY PERSON OR
INDIVIDUAL WAITING INFORMATION
SUCH AS GENOMIC INFORMATION, FOR
THOSE DATA SETS THERE IS A SMALL
CHANCE A TECHNOLOGICALLY
SOPHISTICATED PERSON WITH ACCESS
TO THE DATA COULD REIDENTIFY
SOME INDIVIDUALS IN THE DATA
SET.
SO EVEN THOUGH WE CALL THESE
SHARED DATA SETS DEIDENTIFIED,
WE STILL NEED TO CONTROL WHO
ACCESSES THEM, WHAT IS DONE WITH
THEM, AND TAKE STEPS TO MAKE
REIDENTIFICATION DIFFICULT AND
UNLIKELY.
SO RESEARCH PROJECTS AT NIH HAVE
MANY POLICIES, PRACTICES AND
PROCEDURES FOR PROTECTING THE
PRIVACY AND MAINTAINING THE
ANONYMITY OF RESEARCH
PARTICIPANTS AND PEOPLE WHOSE
DATA WE ARE USING.
COULD WE GO TWO SLIDES FORWARD,
PLEASE?
YEAH.
OKAY.
AND AGAIN, I DON'T HAVE TIME TO
EXPLORE AN EXHAUSTIVE LIST AND
I'M NOT EVEN GOING TO EXPLORE
THIS SHORT LIST.
I'M GOING TO JUST SKIP RIGHT TO
THE LAST BULLET POINT BECAUSE
THIS IS PERHAPS A CONTROVERSIAL
THING FOR ME TO SAY.
I THINK IN SOME CASES CERTAIN
VARIABLES PRESENT SUCH HIGH
SOCIAL OR LEGAL RISK THAT WE
SHOULDN'T COLLECT, ANALYZE OR
SHARE THOSE VARIABLES UNLESS IT
IS REALLY NECESSARY TO ANSWER AN
IMPORTANT SCIENTIFIC QUESTION.
TO GIVE AN EXAMPLE, I'M PART OF
A STUDY WHERE AFTER A COUPLE OF
YEARS OF DESIGNING OUR PROJECT
WE DETERMINED THE LEGAL RISK OF
COLLECTING DATA ON A NEWBORN'S
POSITIVE TOXICOLOGY ARE SO HIGH
THAT WE WOULD NOT COLLECT THOSE
DATA.
NEWBORN'S POSITIVE TOXICOLOGY IS
INDICATIVE OF PRENATAL SUBSTANCE
EXPOS
EXPOSURE, OFTEN EXPOSURE TO
ILLEGAL DRUGS.
EVERY STATE IN THE UNITED STATES
HAS LAWS REQUIRING THAT
INFORMATION BE CONVEYED TO A
CHILD WELFARE AGENCY.
SO WE DETERMINED THAT WE COULD
ACTUALLY DO OUR STUDY AND ANSWER
OUR SCIENTIFIC QUESTIONS WITHOUT
THAT PARTICULAR PIECE OF
INFORMATION ON PRENATAL
SUBSTANCE EXPOSURE.
WE HAD OTHER WAYS OF LEARNING
ABOUT PRENATAL SUBSTANCE
EXPOSURE THAT WERE MORE
DIFFICULT TO COLLECT, BUT
EQUALLY AND MAYBE MORE
SCIENTIFICALLY VALID.
WE PRIORITIZE OUR PARTICIPANT'S
INFORMATIONAL PRIVACY OVER THE
EASE OF DOING OUR SCIENCE.
AND I THINK THAT IF RESEARCHERS
ARE COLLECTING VARIABLES THAT
PARTICIPANTS VIEW AS
PARTICULARLY RISKY, THE
RESEARCHERS SHOULD BE ABLE TO
EXPLAIN WHY THAT INFORMATION IS
NECESSARY TO ANSWER THEIR
SCIENTIFIC QUESTION AND EXPLAIN
ANY HEIGHTENED PRIVACY AND
SECURITY PROTECTIONS THEY HAVE
IMPLEMENTED.
NEXT SLIDE, PLEASE.
THEN YOU CAN GO TO THE NEXT
SLIDE.
AT THIS POINT I HAVE BEEN
TALKING ABOUT STEPS THAT
RESEARCHERS CAN TAKE TO ENGAGE
IN RESPONSIBLE USE OF DATA,
PROCESSES AND PROCEDURES.
BUT THE NEXT COUPLE OF SLIDES I
WANT TO TAKE A COUPLE OF MINUTES
BRIEFLY TO TALK ABOUT THE OTHER
GOVERNESS MECHANISMS AND
PARTICULARLY LEGAL ONES.
SO THE LAW IS PART OF DATA
GOVERNANCE.
SO IF WE CAN GO TO THE NEXT
SLIDE, THE FIRST THING I WANT TO
TALK ABOUT IS CERTIFICATES OF
CONFIDENTIALITY.
THIS IS A LEGAL MECHANISM THAT
IS SPECIFICALLY DESIGNED TO
PROTECT RESEARCH PARTICIPANTS
INFORMATIONAL PRIVACY.
NEXT SLIDE.
THIS IS FEDERAL LAW THAT
REQUIRES THE SECRETARY OF HEALTH
AND HUMAN SERVICES ISSUES A COC
TO ANY RESEARCHER WHO COLLECTS
IDENTIFIABLE SENSITIVE
INFORMATION AS PART OF THEIR
RESEARCH.
THE LAW DEFINES IDENTIFIABLE
SENSITIVE INFORMATION AS ANY
INFORMATION ABOUT AN INDIVIDUAL
GATHERED AND USED IN RESEARCH
AND IDENTIFIED A PERSON OR FOR
WHICH THERE IS AT LEAST A VERY
SMALL RISK THAT IT COULD BE
COMBINED WITH OTHER INFORMATION
TO IDENTIFY A PERSON.
SO ONE THING YOU'LL NOTICE ABOUT
THAT DEFINITION IS IT SAYS
IDENTIFIABLE SENSITIVE
INFORMATION.
SENSITIVE DROPS OUT OF THE
PICTURE.
ANY IDENTIFIABLE INFORMATION
GATHERED IN RESEARCH IS
PROTECTED BY THE COC.
THE SECOND THING ABOUT THE
DEFINITION IS IT VERY BROAD AND
ACTUALLY INCLUDES SOME OF THE
NOMINALLY DEIDENTIFIED
INFORMATION WE KEEP IN
REPOSITORIES.
AND PARTICULARLY GENOMIC
INFORMATION AND ANY ASSOCIATED
INFORMATION IN A DATA SET.
BECAUSE THAT IS INDIVIDUAL
INFORMATION AND THERE IS A SMALL
CHANCE IT COULD REIDENTIFY A
PERSON.
SO IF A COC APPLIES, THEN
RESEARCHERS ARE PROHIBITED FROM
DISCLOSING PARTICIPANTS NAMES OR
OTHER IDENTIFYING INFORMATION OR
BIOSPECIMENS TO PERSONS NOT
CONNECTED WITH THE RESEARCH
UNLESS STATUTORY EXCEPTIONS
APPLY.
I LISTED THEM ON THIS SLIDE.
THERE IS A FOURTH EXCEPTION BUT
IT IS BASICALLILY SUBSUMED INTO
BULLET POINT NUMBER TWO.
DISCLOSURE OF RESEARCH
INFORMATION IS PERMITTED IF THE
PARTICIPANT TO WHOM THE
INFORMATION PERTAINS CONSENTS TO
THAT DISCLOSURE.
NEXT SLIDE, PLEASE.
SO THE COC ALSO PROHIBITS
RESEARCHERS FROM DISCLOSING
IDENTIFIABLE RESEARCH
INFORMATION IN ANY LEGAL,
ADMINISTRATIVE, LEGISLATIVE OR
OTHER PROCEEDING.
IT PROHIBITS DISCLOSURE TO
FEDERAL, STATE OR LOCAL
GOVERNMENT ACTORS AND LAW
ENFORCEMENT ACTORS AS WELL AS TO
PRIVATE PERSONS NOT CONNECTED
WITH THE RESEARCH.
AND IF A COC DOES APPLY TO SOME
DATA, THEN IT APPLIES TO THAT
DATA AND ALL COPIES OF IT
FOREVER.
OR AS THE LAW SAYS, PERPETUITY.
SO NIH HAS A VERY HOPEFUL
WEBSITE EXPLAINING MORE ABOUT
COCs IF YOU ARE INTERESTED.
YOU CAN GOOGLE NIH COC AND FIND
IT.
I HAVE A HALF MINUTE LEFT.
NEXT SLIDE, PLEASE.
I WILL JUST SAY TWO THINGS ABOUT
DATA USE CERTIFICATIONS.
NOT THE FEATHERING KIND OF DUCK.
IT IS A CONTRACT BETWEEN A DATA
REPOSITORY AND THEIR
INSTITUTION.
AND DUCS HAVE BEEN SOMEWHAT
SUCCESSFUL IN HELPING AND
PROMOTING RESPONSIBLE USE OF
DATA AND IN PARTICULAR PROMOTING
GOOD PRACTICES AROUND DATA
SECURITY AND PARTICIPANT PRIVACY
BECAUSE USERS AGREE TO THINGS
LIKE NOT ATTEMPTING TO
REIDENTIFY IN THE DATA SET, NOT
SHARING WITH UNAUTHORIZED
PERSONS, USING SPECIFIC DATA
SECURITY AND OTHER PROVISIONS
THAT CAN HELP PROTECT
PARTICIPANTS' PRIVACY AND
ANONYMITY.
I THINK LET'S DO SOME WORK IN
PROMOTING RESPONSIBLE USE OF
DATA MOSTLY BY PROTECTING
CONTRIBUTORS' PRIVACY.
LAST SLIDE, IN SUMMARY,
RESPONSIBLE USE OF DATA BRINGS
ABOUT SOCIALLY OUTCOMES WHILE
USING DATA OF PEOPLE IN OUR
RESEARCH.
THANK YOU.
>> DR. VIVIAN OTA WANG HAS
EXPERIENCES THAT SPAN
BIOMEDICAL, PSYCHOLOGICAL, NANO
SCALE.
HER EXPERTISE IS CONGENITAL,
TRAUMATIC BRAIN INJURY AND
BEREAVEMENT.
SHE APPLIES HER EXPERTISE AT THE
ACTING DIRECTOR OF THE OFFICE OF
STRATEGIC COORDINATION.
PROVELY A LEAD AT THE NIH OFFICE
OF DATA SCIENCE STRATEGY,
OVERSEEING A REPOSITORY.
HER ACCOMPLISHMENTS ARE
RECOGNIZED BY UNIVERSITY,
PROFESSIONAL AND GOVERNMENT
AWARS.
SHE IS AN AMERICAN MEDICAL
ASSOCIATION FELLOW, A DIPLOMAT
OF THE AMERICAN PSYCHOLOGICAL
ASSOCIATION, THE AMERICAN BOARD
OF MEDICAL GENETICS AND THE
AMERICAN BOARD OF GENETIC
COUNSELING AS WELL AS A LICENSED
PSYCHOLOGIST.
WELCOME DOCTOR OTA WANG.
>> THANK YOU SO MUCH.
GIVEN THE AMOUNT OF TIME, I HAD
THIS GREAT LIST OF QUESTIONS,
BUT I'M JUST GOING TO DO ONE BIG
ZINGER FOR ALL OF YOU.
FIRST OF ALL, I JUST HAVE TO SAY
THANK YOU.
WHAT AN EXCITING AFTERNOON TO
REALLY HEAR ABOUT THE NICE
LANDSCAPE OF DATA AND DATA
SCIENCE AND WHAT IT REALLY MEANS
FOR THE HEALTH OF ALL WOMEN.
I HAVE THE PRIVILEGE OF BEING
ABLE TO MODERATE THIS PANEL WHO
HAVE ELOQUENTLY SHOWN HOW DATA,
DATA SCIENCE AND HOW CONTEXT
TRULY MATTERS.
SO WHAT WE HEARD IS WE HEARD DR.
HILL TALK ABOUT THE IMPORTANCE
OF WORKING WITH VARIOUS DATA
SOURCES AND THE ISSUE OF
CONFIDENTIAL COMPUTING.
WE ALSO HEARD FROM -- SORRY, I'M
GETTING MY NOTES, FROM MELISSA
BUFFALO REALLY TALKING ABOUT THE
CULTURAL CONTEXT MATTER AND HOW
WE NEED TO BE SENSITIVE AND
RESPONSIVE TO THE PATIENTS AND
THE COMMUNITIES WHO GIVE US THE
GIFT OF THEMSELVES, WHICH IS
THEIR DATA AND THEMSELVES.
WE HEARD FROM DR. PROSSER, THE
IMPORTANCE OF THE VOICE OF
PATIENTS.
AT SOME POINT ALL OF US WILL BE
A PATIENT, SO I THINK IT IS TO
VALUE THAT PERSPECTIVE IN
EQUIVALENT OR BALANCE WITH THE
RESEARCHERS AND EXCITING
SCIENCE.
WE HEARD A REALLY WONDERFUL
EXAMPLE LOOKING AT THE
COMPLEXITY OF THE MICROBIOME AND
HOW IT CAN INFLUENCE DIFFERENT
TIME POINTS IN OUR HEALTH
OUTCOMES.
WE ROUNDED IT OUT WITH HEARING
FROM ALEX CARLISLE ABOUT WHAT
ARE THE EXCITING TECHNOLOGIES
THAT ARE REALLY AT THE FOREFRONT
THAT REALLY INCLUDE ALL OF THESE
VOICES AS WELL AS COMMUNITY
INPUT TO REALLY MOVE THE DATA
SCIENCE FORWARD FOR WOMEN'S
HEALTH.
GIVEN THAT, WE ONLY HAVE EIGHT
MINUTES LEFT, I'M GOING TO ASK A
SOMEWHAT LOADED QUESTION.
SO WE'VE TALKED A LOT ABOUT
STRATEGIES FOR LOOKING AT
BALANCING DATA ACCESSIBILITY,
DATA GENERATION AND PRIVACY.
AND WE'VE BEEN HEARING ABOUT THE
EXCITING THINGS RELATED TO THE
SCIENCE AS WELL AS THE
TECHNOLOGY.
WHAT I WOULD LIKE TO HEAR FROM
EACH OF THE PANELISTS IS GIVEN
ALL OF THAT, WHAT DO YOU SEE AS
THE PRIMARY CHALLENGE FACED BY
NOT ONLY THE RESEARCHERS, THE
PATIENTS, THE COMMUNITIES, WHO
ARE CONDUCTING DATA-DRIVEN
WOMEN'S HEALTH RESEARCH AND WHAT
WOULD YOU RECOMMEND HOW
INDIVIDUALS OR INSTITUTIONS CAN
SUPPORT OVERCOMING THEM.
I WILL GO IN REVERSE ORDER AND
START WITH DR. OSSORIO.
>> THAT IS A HUGE QUESTION.
CAN YOU HEAR ME?
>> YEP.
>> THAT'S A HUGE QUESTION.
I -- SO I ACTUALLY THINK THAT
ONE OF THE BIGGEST CHALLENGES IS
MUCH BETTER INTEGRATING THE
VOICES OF PATIENTS AND RESEARCH
PARTICIPANTS AND COMMUNITIES
INTO ACTUAL GOVERNANCE
STRUCTURES FOR DATA.
RIGHT NOW I THINK THERE AREN'T
THAT MANY GOOD EXAMPLES OF
WELL-INTEGRATED VOICES OF THE
PEOPLE WHO ARE PERHAPS MOST
IMPACTED.
I KNOW THAT THERE ARE IN SOME
CASES LEGAL REASONS WHY IT CAN
BE HARD FOR INSTANCE AT THE
LEVEL OF A DATA REPOSITORY.
TO BRING IN OUTSIDE VOICES.
BUT I THINK THERE ARE SOME WAYS
AROUND THAT, ESPECIALLY FOR NIH.
WHETHER, YOU KNOW, IN LARGE
FUNDED PROJECTS WE HAVE TO BE
SURE THAT WE HAVE COMMUNITY
ADVISORY BOARDS, THAT WE HAVE,
YOU KNOW, FUNDING FOR THINGS
LIKE FOCUS GROUPS AMONG
PARTICIPANTS OR PEOPLE FROM
THEIR COMMUNITIES.
OTHER WAYS OF AT LEAST BRINGING
IN THOSE VOICES BECAUSE IN MY
EXPERIENCE, IT IS ACTUALLY VERY
HARD FOR PEOPLE TO CONCEPTUALIZE
THINGS LIKE SECONDARY DATA USE.
I THINK THE MODEL IN EVERYBODY'S
HEAD OF WHAT THEY ARE DOING WHEN
THEY PARTICIPATE IN RESEARCH HAS
TO DO WITH A SITUATION WHERE THE
PARTICIPANT IS IN SOME KIND OF
RELATIONSHIP WITH PERSONNEL IN
THE RESEARCH PROCESS.
AND SO EVEN, LIKE, I DO NOT
THINK INFORMED CONSENT TAKES
CARE OF, YOU KNOW, ALL OF OUR
ISSUES AROUND DATA GOVERNANCE OR
HOW PARTICIPANTS CAN HELP US
THINK ABOUT HOW TO DO THAT WELL.
THANKS.
>> GREAT.
THANK YOU.
A LOT TO THINK ABOUT.
DR. SHENHAV, WHAT WOULD BE YOUR
BIG SUGGESTION FOR US?
>> I THINK MY PERSPECTIVE IS HOW
DO WE BRIDGE THE DISCOVERIES
FROM THE SCIENTIFIC POINT OF
VIEW.
HOW DO WE BRIDGE THESE
DISCOVERIES FROM DATA SCIENCE
PERSPECTIVES, WE CAN GENERATE
WITH THESE LARGE RESOURCES TO
ACTUAL UNDERLINED BIOLOGY AND
ACTIONABLE CLINICAL TRANSLATION.
I THINK THIS IS WHERE THE FIELD
IS AT.
I THINK IN WOMEN'S HEALTH IS
PROBABLY MAYBE A VERY GOOD
EXAMPLE THAT WE HAVE A MACHINE
LEARNING MODEL AND IMPORTANT
FEATURES, BUT THEN WHAT?
HOW DO WE TAKE IT TO THE NEXT
STEP?
AND HOW DO WE INTEGRATE THESE
MODELS INTO A VALIDATION IN
EXPERIMENTAL SETTINGS THAT WILL
BE MUCH MORE SETTING.
THEN WE HAVE THIS CASCADE OF
GETTING EXPERIMENTAL RESULTS.
WE ARE FITTING INTO THE
COMPUTATIONAL MODEL AND USING
HUMAN DATA AND KIND OF AS A
PROCESS, AN INTEGRATED PROCESS
THAT FEEDS ONE ANOTHER, NOT JUST
STOPPING AT THE DATA WE HAVE
COLLECTED, BUT HOW DO WE
GENERATE HYPOTHESIS FROM THIS
DATA, GO TO EXPERIMENTS AND GO
BACK TO THE DATA?
THAT WOULD HELP US DRIVE FORWARD
BIOLOGICAL DISCOVERY AND THEN
WHAT WE CAN ACTUALLY DO WITH
THAT.
HOW WE CAN DRIVE CLINICAL
IMPLEMENTATION AND TRANSLATION.
>> THANK YOU SO MUCH.
IT IS NICE TO HEAR THE
INTEGRATION OF THAT PRACTICAL
PIECE TO GET TO ALL OF US.
DR. CARLISLE.
>> YEAH.
HEY, SO I THINK CAN YOU HEAR ME
OKAY?
YES.
OKAY.
SO I THINK WE ARE AT ANOTHER
RENAISSANCE IN DATA.
SO WE HAD A BIG DATA EXPLOSION A
DECADE OR TWO AGO.
NOW WE ARE ON THE CUSP OF SORT
OF EXPANDING THE MODALITIES OF
DATA, AND LEARNING QUITE FRANKLY
HOW THESE EXPANDED MODALITIES OF
DATA EXPAND HEALTH.
GETTING GOOD STANDARDIZATION AND
STRUCTURING OF THAT DATA.
PARTICULARLY AROUND THE
QUALITATIVE AND REAL WORLD
EVIDENCE.
ONE OF THE EXAMPLES THAT I'LL
USE IS STRESS.
SO IF YOU RECALL THE SLIDE I
SHOWED, ONE OF THE SLIDES I
SHOWED AND TALKED ABOUT NUANCE
ABOUT CAPTURING REAL WORLD
EVIDENCE, THAT IS A PRIME
EXAMPLE OF A TYPE OF DATA THAT
YOU WOULD CATCH FROM
UNDERSTANDING SOMEONE'S LIVED
EXPERIENCE.
BUT HOW DOES THAT HAVE AN IMPACT
ON BIOLOGY, RIGHT?
AND SO ANECDOTELY, WE ARE
COGNIZANT THERE IS AN IMPACT,
RIGHT?
SOME THINGS THAT HAPPEN FROM
BIOCHEMICAL STRUCTURE, ELEVATION
OF CORTISOL LEVELS AND AROUND
STRUCTURES WE ARE EXPOSED TO,
GETTING STANDARDIZATION
ROBUSTNESS AROUND THAT DATA SO
WE CAN GET THAT INTO
COMPUTATIONAL MODELS TO
UNDERSTAND THEIR IMPACT, RIGHT?
WE'VE KNOWN FOR QUITE SOME TIME
THAT COMMUNITIES THAT ARE
EXPOSED TO VARIOUS STRESSES,
THOSE THINGS COULD HAVE
LONGITUDINAL EFFECTS FROM A
GENOMIC PERSPECTIVE.
THEY ARE ISOLATED IN TERMS OF
EPIS THERE GENETIC INHERITANCE,
BUT THERE IS ENOUGH
ENVIRONMENTAL STRESSORS HAVE AH
BIOLOGICAL EFFECT.
WE GET MORE ROBUST AROUND THOSE
TYPES OF DATA MODALITIES, I
THINK WE WILL HAVE SOME
INNOVATION AROUND OUR DATA
MODELS.
>> GREAT.
THANK YOU.
EXCELLENT POINTS I THINK ALL OF
US NEED TO KEEP IN MIND AS WE
MOVE FORWARD.
ROCHELLE PROSSER.
>> MY THOUGHTS ON WHERE WE ARE
GOING WITH DATA AND HOW IT
IMPACTS PEOPLE.
ONE OF THE SLIDES I DIDN'T GET
TO TODAY WAS TALKING ABOUT
ACCESS TO IMAGES.
SOMETHING AS SIMPLE AS WE WANT
TO KNOW WHAT'S ON THE IMAGE AND
HOW THAT IS ON SHARING THAT DAA
WHICH IN REPORTING OR SHARING
THE SOFTWARE BETWEEN THE TWO
DIFFERENT ENTITIES THAT YOU ARE
TRAVELING TO.
AND THAT ENDS UP BECOMING AN
ACTUAL ISSUE IN SURVIVESHIP AND
OUTCOMES.
IN CHILDREN THEY HAVE MORE
RADIATION AND MORE EXPOSURE
BECAUSE WE HAVE TO REDO THE
IMAGE AS THE NURSE OR HEALTH
CARE PROFESSIONAL IS CHASING THE
AMBULANCE DOWN THE STREET WITH A
CD BECAUSE THE DATA IS NOT ABLE
TO BE SHARED.
SO WHERE I SEE WHERE WE ARE
GOING IS THAT WE HAVE TO BE
INTENTIONAL.
THE LEGALITIES OF SHARING DATA
AND ONCE YOU HAVE GIVEN THAT
PERMISSION, YOU CAN RESCIND, BUT
DO YOU REMEMBER YOU ACTUALLY
HAVE GIVEN IT AND THE
IMPLICATION OF ITS USE
AFTERWARDS.
WHERE IT IS IMPACTING CARE AND
IMPACTING MEDICAL DECISIONS, WE
NEED TO BE MORE OPEN AND BE
WILLING TO DO SO FOR PATIENT
OUTCOMES AND QUALITY.
>> GREAT.
THANK YOU.
THANK YOU VERY MUCH.
IS MELISSA BEAUTIFUL, ARE YOU
STILL AVAILABLE?
>> THEY HAD A TORNADO WARNING
AND THEY ARE IN THE BASEMENT.
AND HOPEFULLY SAFE.
>> SAFETY IS FIRST.
I GET THAT.
THE OTHER PERSON WHO IS NOT PART
OF IT, I WOULD LOVE TO HEAR IS
DR. HILL, IF SHE IS STILL
AVAILABLE.
MAYBE I'M ASKING TOO MUCH.
>> SHE IS NO LONGER ON THE
MEETING.
>> OKAY.
ANYWAY, I JUST WANTED TO SAY
THAT THANK YOU VERY MUCH.
ALL OF YOUR PERSPECTIVES
INCLUDING MELISSA'S TALKING
ABOUT THE IMPORTANCE OF
DIFFERENT WAYS OF GOVERNANCE
INCLUDING BEING RESPONSIVE TO
TRIBAL SOVEREIGNTY AND DATA
SOVEREIGNTY ISSUES IS SOMETHING
YOU ALL NEED -- EVERYONE NEEDS
TO KEEP IN MIND AS WE MOVE
FORWARD.
TRYING TO MAKE SENSE AND DOING
RIGHT BY THE DATA AND THE GIFTS
THAT PEOPLE HAVE GIVEN US TO
MOVE FORWARD IN UNDERSTANDING.
RESEARCH AND WOMEN'S HEALTH.
SO THANK YOU VERY MUCH FOR
JOINING US TODAY.
I'M GOING TO TURN IT OVER TO DR.
BARR.
>> THANK YOU.
I WILL PASS IT ALONG TO DR.
CLAYTON WHO WILL INTRODUCE OUR
CLOSING SPEAKER, DR. VIVIAN
PINN.
OVER TO YOU, DR. CLAYTON.
>>> WELL, GOOD AFTERNOON,
EVERYONE.
I HOPE YOU HAVE ENJOYED THIS
SESSION AS MUCH AS I HAVE.
AND I HAVE A DISTINCT PLEASURE
OF INTRODUCING DR. VIVIAN W.
PINN, THE FIRST FULL TIME
DIRECTOR OF THE OFFICE OF
RESEARCH OF WOMEN'S HEALTH, A
MENTOR AND NOW I CAN SAY A
FRIEND.
DR. PINN HAS AN INCREDIBLE TRACK
RECORD OF BEING A TRAIL BLAZER
AND PIONEER IN ALMOST EVERYTHING
SHE HAS DONE.
SHE DOESN'T LIKE IT WHEN WE GIVE
LONG INTRODUCTIONS SO OUT OF
RESPECT FOR HER, I'M GOING TO
HIGHLIGHT SOME OF HER FIRSTS.
SHE HAS BEEN A TRAIL BLAZER IN
LOTS OF PLACES SHE HAS BEEN,
UNIVERSITY OF VIRGINIA MEDICAL
SCHOOL OR CHAIR DEPARTMENT OF
PATHOLOGY.
I THINK THAT JUST SAYS LITERALLY
WHAT A TRAIL BLAZER IS.
IF YOU THINK ABOUT THAT, THAT IS
THE PERSON GOING ON THE TRAIL
FOR THE FIRST TIME AND CUTTING
BAKE WHAT BARRIERS THERE ARE.
THAT PERSON GETS THE MOST
RESISTANCE OR LET'S SAY A LARGE
AMOUNT OF RESISTANCE.
ONE THING I ADMIRE ABOUT DR.
PINN IS HER PERSISTENCE,
REQUIRING EXCELLENCE, HER
RESILIENCE, HER LEADERSHIP, HER
INDEPENDENT THINKING.
SHE IS JUST AN AMAZING, AMAZING
WOMG -- WOMAN AND LEADER.
WE ARE JUST ASKING YOU TO SAY
ONE OR TWO WORDS.
WE JUST WANT TO HEAR A LITTLE
BIT FROM YOU TODAY AS WE MOVE
TOWARDS THE END OF OUR PROGRAM.
ARE YOU ENABLE TO UNMUTE AND GET
ON CAMERA FOR US?
>> I THINK I'M UNMUTE.
THANK YOU DR. CLAYTON FOR THOSE
WORDS.
I WILL PAY YOU LATER.
I HAVE TO COMPLIMENT YOU ON
PUTTING ON THIS FOUR-OUR
SYMPOSIUM SO PACKED FULL OF
INFORMATION.
EVERY SPEAKER HAD A DIFFERENT
ASPECT ADDRESSING OUR TOPIC,
DATA-DRIVEN INNOVATION FOR THE
HEALTH OF WOMEN.
I WAS TAKING NOTES LEFT AND
RIGHT AND WHAT I WAS THINKING IS
HOW IMPORTANT THIS IS AS YOU
APPROACH THE 30th YEAR OF THE
OFFICE WHICH IN ITSELF IS
SIGNIFICANT.
YOU SURVIVED FOR 30 YEARS.
WE ARE STILL GOING STRONG AND
YOU'VE STILL GOT STRONG SUPPORT.
I WAS THINKING BACK TO WHEN THE
OFFICE WAS FIRST ESTABLISHED AND
SO MUCH CRITICISM WE DON'T NEED
AN OFFICE ON RESEARCH ON WOMEN'S
HEALTH.
OUR RESPONSE WAS WE WEREN'T IN
THIS TO BE POLITICALLY CORRECT
OR USING THE TERM THEY USE THESE
DAYS WHICH I DON'T LIKE TO USE,
BUT EVERYTHING WE WOULD DO IN
THIS OFFICE, EVERYTHING WE WOULD
FUND, EVERY RESEARCH GRANT WE
SPONSOR WOULD BE DRIVEN BY
SCIENCE.
THEY WOULD BE SCIENCE-DRIVEN
INITIATIVES.
WITH THE DISCUSSION TODAY
LOOKING AT DATA-DRIVEN
INNOVATION, THAT IS WHAT YOU
WERE ADDRESSING, SCIENCE-DRIVEN
INITIATIVES AND THE DATA
PROVIDES THE SCIENTIFIC
BACKGROUND FOR MOVING THIS WHOLE
FIELD FORWARD.
I WOULD LOVE TO REITERATE WHAT
EACH OF YOUR SPEAKERS SAY.
I THANK DR. OTA WANG SUMMARIZED
NICELY WHAT EACH OF THE SPEAKERS
PRESENTED AND I WON'T GO THROUGH
THAT AGAIN.
BUT I JUST WAS REALLY STRUCK BY
EVERYTHING FROM LOOKING AT THE
PRIVACY ASPECTS, THE ETHICAL
ASPECTS, THE CULTURAL ASPECTS,
THE SCIENTIFIC ASPECTS AND MOST
OF ALL KNOWING AS WE ENCOURAGE
WOMEN TO BE PART OF CLINICAL
TRIALS, WOMEN AND MEN TO BE PART
OF CLINICAL TRIALS, ACTUALLY, TO
POINT OUT THE IMPORTANCE OF NOT
ONLY INCLUDING THEM IN THE
DESIGN OF RESEARCH BY MAKING
SURE WE SHARE THAT INFORMATION
DERIVED FROM THE STUDY BACK TO
THE COMMUNITY INVOLVED IN THE
STUDY.
I THINK EACH OF YOUR SPEAKERS
STRESSED THAT TO SOME DEGREE.
I'M GRATEFUL.
THANK YOU FOR HAVING THE
SYMPOSIUM IN MY NAME.
IT IS REALLY FLATTERING.
I WOULD LIKE TO CONGRATULATE ALL
OF YOUR SPEAKERS AS WELL AS FROM
THE OFFICE STAFF WHO PRESENTED
ABOUT THE PROGRAMS AND
INNOVATIONS THERE.
AND JUST SAY WELL DONE.
I'M SO PROUD OF WHAT YOU'VE DONE
AND HOW YOU ARE CARING FOR THE
SCIENCE OF WOMEN'S HEALTH AND
RECOGNIZING THE IMPORTANT OF
DATA-DRIVEN INNOVATION AND YOUR
SPEAKERS DID A BEAUTIFUL JOB OF
PRESENTING THAT TODAY.
THANK YOU.
AND THANK YOU FOR ALL OF YOU FOR
BEING INTERESTED IN WOMEN'S
HEALTH AND SUPPORTS DR. CLAYTON
AND THE STAFF AND THE OFFICE TO
KEEP THIS OFFICE GOING STRONG,
NOT JUST FOR THE 30th
ANNIVERSARY, BUT LOOKING FOR THE
40th AND 50th ANNIVERSARY.
THANK YOU, DR. CLAYTON.
>> THANK YOU, DR. PINN.
WE ARE JUST SO DELIGHTED TO HAVE
YOU WITH US.
IT IS OUR PRIVILEGE TO CONTINUE
THE WORK THAT YOU STARTED FOR
THE BENEFIT OF ALL WOMEN IN THE
U.S. AND BEYOND.
WE WILL CONTINUE PUTTING SCIENCE
TO WORK FOR THE HEALTH OF WOMEN.
I WANT TO ADD MY THANKS TO DR.
ELIZABETH BARR WHO HAS BEEN THE
LEAD FOR THIS EFFORT THIS YEAR.
AND HER TEAM AND EVERYONE BEHIND
THE SCENES THAT MADE THIS WORK
TODAY AND WITH THAT, ALL OF OUR
SPEAKERS, EVERYONE HERE
GATHERED, OUR ATTENDEES, THE
FOLKS AT NIH, I'M GOING TO GIVE
THE LAST WORD TO THE LEAD DR.
ELIZABETH BARR.
>> THANK YOU, DR. CLAYTON AND
THANK YOU DR. PINN.
WE HAVE BEEN DELIGHTED TO HEAR
SUCH EXCITING SCIENCE TODAY AND
TO REITERATE THERE HAVE BEEN
DOZENS AND DOZENS OF PEOPLE
WORKING BEHIND THE SCENES TO
BRING THIS EVENT INTO FRUITION
AND WE'VE BEEN INCREDIBLY
GRATEFUL TO THEIR PERSISTENCE
AND PERSEVERANCE AND WITH THAT,
TODAY'S MEETING IS ADJOURNED.
THANK YOU ALL VERY MUCH.
>> THANK YOU.