ALL RIGHT, AND GOOD MORNING
EVERYONE EMPLOY I'M DEBORAH,
DIRECTOR OF DIRECTOR OF THE
NATIONAL EN--STRATEGIESITUTE OF
DEAF AND OTHER DISORDERS.
THANK YOU TO ALL OF YOU IN THE
ROOM AND WELCOME TO ALL WHO ARE
JOINING US BY VIDEOCAST.
FOR THOSE OF YOU WHO ARE VIEWING
ON NIH VIEDMAN KRE TINS CAST,
PLOAZ BE ADVISED THAT TO TURN ON
THE CAPTIONS, IF YOU WANT TO DO
SO, FOR TODAY'S PRESENTATION YOU
CAN CLICK THE CC BUTTON AT THE
BOTTOM OF THE SCREEN.
SO I'M PLEASED TO WELCOME
EVERYONE JOINING US TODAY FOR
THE NIDCD'S DIRECTOR'S SEMINAR
SERIES, ADVANCING THE SCIENCE OF
COMMUNICATION TO IMPROVE LIVES
EMPLOY THIS ANNUAL SEMINAR
SERIES IS DESIGNED TO ALIGN WITH
THE THEMES AND PRIORITIES OF THE
NIH 2023--2027 STRATEGIC PLAN,
THE GOAL IS TO BALANCE, VOICE,
SPEECH, TASTE, SMELL AND
LANGUAGE.
TODAY I AM DELIGHTED TO ANNOUNCE
DR. ADAM RESNICK, HE WITH THE
CATADRIVEN DORPHY IN BIOMEDICINE
AT THE CHILDREN'S HOSPITAL AT
PHILADELPHIA.
DR. RESNICK IS RESPONSIBLE FOR
LEADING A MULTIDISCIPLINARY TEAM
TO BUILD AND SUPPORT A SCALABLE
PATIENT-FOCUSED HEALTHCARE AND
EDUCATIONAL ECOSYSTEM TO
ACCELERATE DISCOVERY AND
CLINICAL TRANSLATION FOR ALL
CHILDREN.
HE ALSO LEADS THE ONGOING
DEVELOPMENT OF PLATFORMS
SUPPORTING LARGE SCALE DATA
SHARING AND COLLABORATIVE
DISCOVERY IN THE AREAS OF
PEDIATRIC CANCERS, STRUCTURAL
BIRTH DEFECTS AND DOWNS
SYNDROME.
AND THESE INCLUDE THE GABRIELA
MILLER, KIDS FIRST, DATA
RESEARCH CENTER, WHICH IS
SUPPORTED BY THE NIH COMMON
FUND, AND THE ENCLUED PROJECTS
DATA HUB AND INCLUDE STANDS FOR
INVESTIGATION OF CO-OCCURRING
CONDITIONS ACROSS THE LIFE SPAN
TO UNDERSTAND DOWNS SYNDROME AND
THIS IS A PROGRAM THAT NIDCD
DOES PARTICIPATE IN.
DR. RESNICK'S PRESENTATION WILL
ADDRESS FUNDAMENTAL ISSUES
RELATED TO HOW DATA ARE USED AND
ACCESSED IN BOTH BASIC AND
CLINICAL RESEARCH AND IN
DECISION SUPPORT AND PRECISION
BASED CARE.
HE WILL REVIEW LESSONS LEARNED
THROUGH NIH WIDE INITIATIVES,
AND HE WILL DISCUSS UPCOMING
ADVANCEMENTS IN MACHINE LEARNING
AND ART FECIAL INTELLIGENCE TO
SUPPORT AND IMPROVE PERSONALIZED
CARE EMPLOY AFTER DR. RESNICK'S
REMARKS, I HAVE INVITED 3
NETWORK IH SCIENTISTS TO JOIN US
FOR A PANEL DISCUSSION AND A
FURTHER DISCUSSION OF THESE
THEMES AND I WILL INTRODUCE OUR
PANELISTS LATER.
SO NOW I WILL TURN IT OVER TO
DR. RESNICK FOR HIS REMARKS AND
THANK YOU SO MUCH FOR BEING WITH
US TODAY.
[ APPLAUSE ]
>> YOU KNOW WHEN I GOT INVITED I
WASENTIOUS SPECIALLY EXCITED
AFTER READING THE STRATEGIC PLAN
THAT WAS BRIEFLY DEVELOPED.
AT THE SAME TIME I WAS MORE
NERVOUS THAN USUAL TO COME IN
PART BECAUSE WITH ANY
ORGANIZATION, TAKES ANY
DIRECTIVE ON INITTIAIVE ITS,
IT'S VERY VULNERABLE AND
OPPORTUNISTIC TIME SO I WANTED
TO PROVIDE AS MUCH ENCOURAGEMENT
AND SUPPORT FOR THOSE EFFORTS,
YOU KNOW THROUGH THIS
PRESENTATION AND SO, AS I
MENTIONED, MY GOAL IS TO REALLY
SHARE EXPERIENCES AND LESSONS
LEARNED DEFINITELY NOT CONVEY
THAT ALL PROBLEMS ARE SOLVED AND
THAT SOMEHOW I HAVE THOSE
SOLUTIONS FOR YOU.
BUT YOU KNOW WE'VE BEEN DOING
THIS FOR SOMETIME IN WAYS THAT I
THINK I CAN PROVIDE SOME
EXPERIENCES THROUGH BOTH OUR
PEDIATRIC CONSORTIA BASED
INITIATIVES THAT FOCUS DATA
SHARING ASK COORDINATION AS WELL
AS NIH-BASED EFFORTS IN WAYS
THAT ARE NOW POSITIONED WITH A
VERY UNIQUE CONTEXT AS NEW
TECHNOLOGIES ARE EAMERICANNING
AND HEALTHCARE SYSTEMS ARE
ORIENTING TOWARDS DATA ORIENTED
NETWORKS FOR PRECISION CARE.
WHEN I CAME ACROSS THIS BOX IN
THE STRATEGIC PLAN, I HAD A
MOMENT WHERE MY HEART JUMPED FOR
A SECOND AND THE REASON IT
JUMPED IS BECAUSE THERE'S A
METAFRAMEWORK FOR THE VISION FOR
NIDCD AND I'LL SPEND AND INDULGE
IN 5 MINUTES FOR THAT
METAFRAMEWORK TO ALIGN HOPEFULLY
A RE14 YOU WILL SEE THROUGH THE
REST OF THE TALK.
SO ADVANCING THE SCIENCE OF
EDUCATION TO IMPROVE LIVES.
--COMMUNICATION TO IMPROVE
LIVES.
WHENEVER I WORK ON
COMMUNICATIONS, THE FIRST THING
THAT COMES TO MY MIND AND THIS
TRANSFORMATIVE PAPER FROM 1948
FROM CLAUDE CHANEN, ESSENTIALLY
INVENTED THE MODERN FRAMEWORK
FOR INFORMATION THEORY AND
ESSENTIALLY INVENTED WHAT WAS IS
CALLED A BIT IN THE CONTEXT AND
THE WAY THAT HE FRAMED
INFORMATION THEORY IS IN THE
CONTEXT OF COMMUNICATION, RIGHT?
SO THE PAPER AND ANY SORT OF
DATA [INDISCERNIBLE] WILL ALERT
AND KNOW THIS TITLE BY HEART AND
THAT MABLGHTMATICAL THEORY OF
COMMUNICATION AND AND
CONTEXTUALIZED 1 OF THE
COMMUNICATION FROM BASIC HUMAN
NEEDS FROM SMOKE SIGNALS TO
PIGEONS TO TELEVISION, BUT THE
AT TIME THE ENGINEERING OF
ENGINEERING SYSTEMS IS ALWAYS
TIED TO THE SPECIFIC AND BESPOKE
FRAMEWORKS AND WHAT CLAUDE
SHANNON DID WAS DEVELOP A
EXTRACTION AND THEORY FOR
COMMUNICATION INFORMATION
THEORY.
THAT INFORMATION IS OFTEN DRIVEN
FROM THIS MANUSCRIPT IN THIS
WAY, THAT ESSENTIALLY SIGNALS
START AT A SOURCE, A MESSAGE IS
CONVEYED, THAT SIGNAL HAS TO BE
PROCESSED AND RECEIVED, AND THEN
ENTERPRETINAL LOCATIONED BY
DESTINATION.
AND IT'S HUMANLY IMPOSSIBLE TO
AVOID WHAT CLAUDE SHANNON CALLED
NOISE, RIGHT?
THAT THERE'S NO WAY TO GET TRUE
FIDELITY WHEN THEIR MESSAGE IS
SENT AND RECEIVED, WHETHER
THAT'S OVER A PHONE LINE OR ME
SPEAKING TO YOU IN FRONT.
AND AS YOU BEGAN THINKING ABOUT
THIS IS WHERE HE REALLY BEGAN
DEFINING THE MATHEMATICAL
FRAMEWORK FOR WHAT MOST OF US
THINK OF TODAY OF BITS OF
STORAGE UNITS RIGHT, LIKE HOW
MANY MEGABITS OR ANYTHING ALONG
THOSE NUMBERS THAT YOU THINK
ABOUT FOR YOUR PHONE'S
COMMUNICATION, SPEEDS OR STORAGE
VARIABLES.
BUT HE REALLY FUNDAMENTALLY
DEFEIGNED 0 AND 1 AS THE ONLY
WAY TO STORE AND COMMUNICATE
DATA THROUGH TECHNOLOGY.
AND IMPORTANTLY, HE WAS THE
FIRST 1 THAT THEN TOOK THE NEXT
STEP AND SAID YOU CAN ACTUALLY
MEASURE INFORMATION.
BITS ARE ACTUALLY UNITS OF
MEASURE.
PRIOR TO CLAUDE SHANNON THERE
WAS NO UNIT OF MEASURE FOR HOW
MUCH INFORMATION EXISTS IN ANY
CONTEXT.
AND HOPEFULLY CAN YOU SEE THAT
THAT LAYS THE FOUNDATION FOR
WHAT THEN EXPLODED INTO A
COMMUNICATION FRAMEWORK,
ADVANCEMENT OF COMPUTER
TECHNOLOGIES AND WHAT INVARIABLY
SEEPED INTO THE LANGUAGE OF
BIOLOGY, RIGHT?
SO IT'S NOT A CO INCIDENCE THAT
WE TALK ABOUT A DNA CODE, THAT
WE TALK ABOUT TRANSCRIPTION AND
TRANSLATION AND DNA AND RNA,
THAT THERE'S THIS NOTION OF
MESSENGER RNA, AND EPIGENETICS
WE TALK ABOUT READERS, WRITERS
AND ERASERS, THAT'S CODE AS
PROXIMAL TO CODE AND TECHNOLOGY
BEGAN SEEPING EVERYWHERE AFTER
CLAUDE SHANNON DEVELOPED HIS
MATHEMATICAL FORMULA.
AND PART OF MY HOPE TODAY IS TO
REALLY FRAME THE ARC FROM CLAUDE
SHANNON TO WHERE WE ARE TODAY IN
A WAY THAT'S INCREDIBLY
PRESCIENT.
FOR THOSE THAT ARE GOING HOME
AND READ HIS MANUSCRIPT, WHEN
YOU WILL FIND IS THAT HALFWAY
THROUGH HE STARTS THINKING ABOUT
LANGUAGE AS A MODEL FOR
MEASURING INFORMATIONAL CONTENT
AND HOW LANGUAGE ITSELF
STRUCTURES AND CONSTRAINS
INFORMATION AND HE DOES THIS
EXPERIMENT OF IF YOU--HOW MUCH
INFORMATION IS ENCODED IN THE
STRUCTURE OF LANGUAGE THAT YOU
CAN BRING IN, RIGHT?
SO IF YOU START UNDERSTANDING
THE FREQUENCY OF LETTERS ACROSS
LANGUAGE, THE POSITION OF 2
LETTERS NEXT TO EACH XRGT HOW
OFTEN THAT HAPPENS YOU CAN START
MAKING PREDICTION ANDS IF YOU
JUST RANDOMLY IMPLEMENT THOSE
RULES, RANDOM LETTERS START
LOOKING MORE AND MORE LIKE
SENTENCES OR YOU CAN SEE THIS
HAPPENING ALL THE WAY FROM 1-5.
BY NUMBER 5, RANDOM CODE
ESSENTIALLY STARTS CREATING
LANGUAGE LOOKING THINGS IF YOU
JUST IMPLEMENT THESE RULES FOR
COMMUNICATION AND HOW LANGUAGE
STRUCTURES THROUGH CODE IN THAT
SETTING, REMARKABLY IT TOOK
ALMOST 75 YEARS FOR THAT TO COME
FULL CIRCLE, IN WHAT I'M SURE
ALL OF YOU KNOW OF AS CHAT GPT.
SO CHAT GPT, ESSENTIALLY IS
ASTRONOMICALLY MORE ADVANCED
VERSION OF THAT PREDICTIVE
ALGORITHM, FOR THESE LARGE
LANGUAGE MODELS ESSENTIALLY
PREDICT THE NEXT WORD IN THE
SENTENCE AND BY JUST DOING THAT
BASING ALL OTHER MATERIAL ON THE
WEB, KNOWLEDGE ACTUALLY GETS
CREATED, RIGHT?
THE STRUCTURE OF LANGUAGE AND
KNOWLEDGE ARE JUXTAPOSED RIGHT
AGAINST EACH OTHER IN WAYS THAT
SEEM ALMOST HUMAN RIGHT IN THE
CONTEXT OF INTERACTION OF
CHATGPT.
THAT WAS MY PRIVATE INDULGENCE
BECAUSE AS YOU CAN TELL I'M A
CLAUDE SHANNON FANATIC BUT FOR
ME IT WAS SUCH AN UNCANNY
STATEMENT, RIGHT, YOUR MISSION
ARK ROUND COMMUNICATION AND
COMMUNICATION AND FOUNDATION FOR
ALL WE DO AS A LAYER IN DATA
SCIENCE AS A COMMON EXCHANGE
ESSENTIALLY FOR HAVE VISION
MOVING FORWARD AND WHEN WE
STARTED OUR ARC TO DEVELOP
PLATFORMS AND RESOURCES, I KNEW
OF CLAUDE SHANNON BUT I
DEPARTMENT KNOW HOW TO BUILD OR
MAKE THINGS WORK ON BEHALF OF
SHARING DATA, AND OUR FIRST
PROJECT REALLY BEGAN AROUND
WHAT'S STILL THE LEADING CAUSE
IS EASILY RELATED TO DEATH IN
CHILDREN ASK THAT WAS A YOUNG
FACULTY AT CHOP AND MY GOAL WAS
TO START COLLECTING AND
GENERATING MOLECULAR DAT SETS
FOR PEDIATRIC BRAIN TUMORS.
AND THE REASON FOR THAT WAS
BECAUSE WE AND MANY OF AND YOU
MANY OTHERS HAD ADOPTED THE
MODEL FOR WHAT IT TAKES TO
DEVELOP NEW THERAPEUTICS FOR ANY
CONDITION, RIGHT?
THERE'S A FAIRLY STANDARDIZED
RECAPITULATED FRAMEWORK THAT YOU
SEE HERE THAT SORT OF CREATES A
CHEVRON CHAIN OF PREDISCOVERY,
DRUG DISCOVERY, PRECLINICAL
DEVELOPMENT, CLINICAL TRIAL
FRAMEWORK, FDA APPROVAL AND THEN
POST MARKETING AND OTHER
ACTIVITIES.
THE REALITY IS THAT THIS IS NOT
THE REALITY, NOTHING IS LINEAR
IN THIS PROCESS, AND I THOUGHT
THAT THOSE COLLEAGUES DID A
REALLY GREAT JOB A COUPLE YEARS
AGO CONVERTING THAT LINEAR
FRAMEWORK AND WHAT THEY CALL
PRECISION MEDICINE MAP.
I DON'T EXPECT YOU TO LOOK AT IT
AND BE ABLE TO READ EVERY SINGLE
PIECE BUT WHAT YOU CAN SEE IT'S
A COMPLEX RECURSIVE FRAMEWORK
THAT HAS KEY ELEMENTS THAT ARE
REQUIRED ESSENTIALLY TO GO
END-TO-END AND THEY GO ALL THE
WAY AND START AT BASIC RESEARCH
AND TARGET IDEBTIFICATION TO
TARGET FROM ECOLOGY OR BIOMARKER
DEVELOPMENT, 1 WILL THINK
TRANSLATING THAT RESEARCH INTO
SOMETHING YOU CAN MEASURE AND
ACT ON.
THEN YOU DEVELOP A LEAD
IDENTIFICATION AND YOU LAUNCH
CLINICAL TRIAL ANDS YOU GO
THROUGH FDA REVIEW, AND OTHER
ACTIVITIES BUT THE FIRST 4
STEPS, RIGHT OF BASIC RESEARCH,
UNDERSTANDING THE BIOLOGY,
DEVELOPING WAYS TO MEASURE IT,
AND THEN IMP LEMMING THE
FRAMEWORKS ARE KEY, SO HERE IN
THE TOP LEFT CORNER BECAUSE THIS
IS THE AREA OF UNMET NEEDS
ACROSS ANY DEC SETTING OR
CONDITION IF YOU WANT TO ADVANCE
A PRECISION MEDICINE FRAMEWORK,
YOU HAVE TO HAVE THESE PIECES IN
PLACE, RIGHT IN YOU HAVE TO
THINK ABOUT REPOSITORY, DATA
MINING, ABOUT I O MEDICAL
INFORMATICS, HYPOTHESIS
GENERATION, GENO TYPES, CLINICAL
TRIAL INN ROLLMENT OF SUBJECTS,
ALL OF THESE BOXES YOU HAVE TO
CREATE NO MATTER WHICH DISEASE
YOU TAKE EMPLOY SO WE WERE IN
PEDIATRIC CANCER.
WE KNEW WE HAD TO DO THIS AND
THE LEFT-HAND SIDE IS THE PILLAR
THAT ANY COMMUNITY HAS TO
UNDERTAKE.
SO OUR MODEL WAS TO SAY HOW DO
WE SOLVE THIS AS A COMMUNITY?
AND SO WE TRANSFORM THAT INTO
THIS METHODOLOGY AS A FRAMEWORK
WHICH IS WE WILL TART WITH
COLLECTING ANNOTATED SAMPLES
CLINICALLY ANNOTATED SAMPLES.
WE WILL TRANSFORM THEM INTO DATA
MEANING YOU MIGHT SEQUENCE THOSE
SAMPLES, CHARACTERIZE THEM, NOT
JUST WHAT COMES OFF THE MACHINE,
THAT'S NOT A SUBTRAIT FOR
DISCOVERY BECAUSE YOU HAVE TO
THEN STRUCTURE AND HARMONIZE AND
CONNECK THAT DATA TO OTHER DATA
SETS, THAT'S THAT INFORMATION
LAYER AND THEN ONLY WHEN YOU
UNDERSTAND THAT INFORMATION
LAYER AND CAN ACTUALLY AND ACT
ON IT AND BECOME KNOWLEDGE THAT
THEY CAN TRANSLATE THAT AND THE
HYPOTHESIS WAS THAT IN RARE
DISEASE SETTING OF PEDIATRIC
CANCER WE WILL HAVE TO LAY
THERAPY AND WORK FLOW WITH
INFRANCIS COLLINS STRUCKURE AND
THAT'S WHAT YOU SEE THE
CONTROLLER OF BANKS ON THE TOP
AND BELOW, RIGHT?
WE WANTED TO--THESE ARE AMBITION
SPACES, PLATFORMS CREATED TO
OTHER PLATFORMS ISSUES CREATE
REALTIME DYNAMIC EXCHANGE OF
DATA BETWEEN INSTITUTIONS THAT
HARNESSED HARMONIZED DATA SETS
THAT ALLOWED ANYBODY TO ITERATE
THE HYPOTHESIS AROUND THE DAILY
BASIS DATA BECAUSE WE RECOGNIZE
THAT NO SINGLE INSTITUTION WOULD
HAVE ENOUGH SAMPLES OR ENOUGH
RESEARCHERS TO ACTUALLY PERFORM
RESEARCH THAT'S REQUIRED.
SO WE STARTED WITH 4
INSTITUTIONS AND WE STAYED AT 4
FOR A WHILE AND UNTIL WE STARTED
GENERATING LARGE ENOUGH COHORTS
WAS A VALUE PROPOSITION WAS THAT
BY JOINING THE COHORT, YOU
ACTUALLY EMPOWERED YOUR OWN
DATA, THIS IS A KEY SORT OF
SHIFT, RIGHT?
THE MINUTE YOU HAVE A
FOUNDATIONAL LAYER OF A RESOURCE
WHERE ANY ENTITIAADS VALUE TO
THE RESOURCE, YOU PASSED THE
MILESTONE BECAUSE THE ECONOMICS
OF HUMAN BEHAVIOR AND DORPHY
START ALIGNING, RIGHT, IT'S THE
TRADITIONAL COMPETITIVE OR
SILOED APPROACHES ARE ACTUALLY
DETRIMENTAL TO THOSE WHO MIGHT
NOT SHARE BECAUSE THE COMMUNITY
HAS ALREADY CREATED A LARGER
RESOURCE THAN THEY HAVE ON THEIR
OWN, RIGHT?
SO WE KNEW THAT HAD TO BE THE
CASE.
WE KNEW THAT WOULD BE THE
FULCRUM SHIFT, THE MINUTE WE HAD
MORE SAMPLES AND DATA THAT ANY
SINGLE INSTITUTION WOULD HAVE
WOULD BE AT THEIR ADVANTAGE TO
CONNECT AND THEN SUDDENLY ALL
THE SITES MARCHED ALONG AND WE
GREW THE OTHER SITES.
TODAY THEY'RE ARE MORE THAN 5000
ENROLLED PARTICIPANTS EMPLOY THE
LARGEST PEDIATRIC BRAIN TUMOR
STUDY EVER CREATED ACROSS
SAMPLES, DATA SETS, MODELS.
THE PROJECTS IN THIS CONTEXT ARE
ALSO VERY LARGE AND IMPORTANTLY
WE TOOK A COUPLE STEPS THAT I
THINK WERE KEY.
ONE YOU DON'T HAVE TO BE A
MEMBER OF THE CONSORTIUM TO
ACCESS DATA OR THE SAMPLES.
AGAIN, YOU HAVE TO ALIGN TO THIS
MENTAL MODEL, ANYBODY WHO CAN
CONTRIBUTE TO THE DISCOVERY
PROCESS SHOULD BE ABLE TO DO
THIS.
NOW THAT'S AN ANTITHETICAL
POSITION TO MOST INSTITUTIONS
AND INVESTIGATORS.
THE WAY WE ACCOMPLISH THAT IS
THROUGH PARTNERSHIPS WITH
PATIENT ADVOCATES.
SO THE PATIENT ADVOCATES, RIGHT,
WHAT'S THEIR NUMBER 1 GOAL.
THEIR NUMBER 1 GOAL IS
ACCELERATE DISCOVERY.
THEY VERY RAPIDLY UNDERSTAND
THAT THE MORE PEOPLE WHO WORK ON
THEIR SAMPLES, THE MORE PEOPLE
WHO HAVE ACCESS TO THEIR DATA,
THE MORE LIKELY WE ARE IN THE
COMMUNITY TO DEVELOP CURES.
AND SO, WE EMPOWERED PATES AND
THEIR FELLOWS TO ASK WHY ISN'T
SOMETHING HAPPENING?
AND IT WOULD NEVER BE SUFFICIENT
TO SAY WELL I WANTED TO MAKE MY
POST DOC HAD A JOB, AND THE
FAMILY WOULD SAY, I WANT TO MAKE
SURE MY KID GETS BETTER SO AS A
COMMUNITY YOU HAVE TO GO THROUGH
THE FRAMEWORK OF HOW DO YOU
ADDRESS THAT?
HOW DO YOU TART TO ALIEP THESE
PROCESSES OF BASIC RESEARCH,
STANDARD ACADEMEC PROCESS WITH
COMMUNITY BUILDING AND
ENGAGEMENT?
AGAIN THE SECRET IS RADICAL
TRANSPARENCY AROUND PROCESSES,
SO THAT'S REPUTATIONAL FRAMEWORK
SORE PARTNERSHIP OVERRIDES
SELF-INTEREST AND IT'S MORE
ADVANTAGEOUS FOR ANYONE TO
COLLABORATE THAN TO OPERATE ON
THEIR OWN.
NOW, I WAS TREANED AS A
NEUROSCIENTIST, I WORKED MY
FIRST LAB WAS REALLY JUST A
LABORATORY ENVIRONMENT.
HERE SUDDENLY I WAS THRUST INTO
THIS ENVIRONMENT OF SAYING,
OKAY, --I HAVE ALL THESE PEOPLE
TO AGREE TO SHARE SAMPLES, OR
GENERATING ALL THIS DAT ANNOT
ALL OF THEM HAVE
BIOINFORMATICIANS, AND DATA
SCIENTISTS AT THEIR SITES, IT'S
A RIPE ENVIRONMENT FOR DESPERATE
RESOURCES, SUDDENLY AGAIN
EMERGING, IF 1 OF THOSE
INSTITUTIONS CAN HARNESS DATA
FASTER THAN ANOTHER INSTITUTION,
YOU CREATE DISPARITIES, RATES OF
EXCHANGE.
SO WE THOUGHT ABOUT HOW DO WE
CREATE THE NEXT LAYER ON TOP OF
THE ANALOGUE LAYER OF SAMPLES
AND DATA SETS, HOW DO WE CREATE
SHARING PLATFORMS, ANALYTIC
PLATFORMS THAT CAN BEA ACCESSED
BY ANYONE EMPLOY AND SEVERAL
THINGS HAPPEN THAT WE HAVEN'T
FULLY SOLVED SO I PROMISE MYSELF
I WILL TELL YOU A THINK THIS WE
HAVEN'T SOLVED.
VERY EARLY ON, WE GOTS LIKE THE
FOLLOWING, IF YOU ARE GOING TO
CARRY A PLATFORM ISSUES I WANT A
PLATFORM FOR MY DISEASE AND WE
WOULD GET ANOTHER PERSON WHO
WOULD SAY I WANT A PLATFORM FOR
THEIR BRAIN DISEASE.
EVERYBODY WANTED THEIR OWN
PLATFORM.
AND IN MANY WAYS THE INSTINCT IS
TO ORIENT AROUND YOUR COMMUNITY
INTEREST, RIGHT, BRING PEOPLE
TOGETHER.
BUT THE REALITY IS IT'S
IMPOSSIBLE FINANCIALLY AND
RESOURCE WISE TO HAVE A HUNDRED
DIFFERENT PLATFORMS FOR EACH
INDIVIDUAL ENTITY, WE EVEN GOT
PEOPLE WITHIN A SINGLE ENTITY
SAY I WILL LIKE MY SUBTYPE TO
HAVE MY OWN VERSION OF A
PLATFORM AND I THINK PART OF IT
HAS TO DO WITH THE FACT THAT YOU
KNOW THEIR NETWORK RIGHT, IS SO
TIGHT, THERE'S SUCH IDENTITY TO
COORDINATION ACROSS PATIENTS AND
RESEARCHERS, THAT'S THE INTINCT.
OUR ARGUMENT WAS THAT ACTUALLY
IF WE CREATED 1A PLATFORM YOU
MIGHT ACTUALLY LEARN FROM EACH
OTHER, CREATE PARTNERSHIPS YOU
DEPARTMENT HAVE BEFORE, MAYBE
CREATE SOMETHING FOR GENE X,
THAT'S PLAGUING YOUR DISEASE
EMPLOY IT WASN'T A MESSAGE THAT
WAS IMMEDIATELY SOLD.
IT'S STILL A MESSAGE WE'RE
DEVELOPING BUT IT DID END UP
BEING A REALITY IN MANY WAYS.
AND SO I STILL FEEL LIKE WE
HAVEN'T FOUND THAT PERFECT
BALANCE OF CREATING A PLATFORM
THAT'S CENTRALIZED AND COVERS A
LARGE NUMBER OF DISEASE
SETTINGS, CONTEXT CAN CONDITIONS
THAT EMPOWERS COLLABORATION, BUT
IN WAYS THAT SUFFICIENTLY
ENGAGING FOR SOMEONE TO COME AND
SAY, THAT'S MY PLATFORM, RIGHT,
THE HUMAN LAYER OF IDENTITY IS
STILL A CHALLENGE FOR US.
WITH THAT IDEA THAT YOU CAN
INTERSECT ACROSS DECS WAS ALSO
SHARED BY NIH AND IN 2018 WE
WERE FORTUNATE ENOUGH TO TAKE
THOSE LESSONS LEARNED THROUGH
THE GABRIELA MILLER
[INDISCERNIBLE] FIRST DATA
RESOURCE.
GAB RIALLIA WAS A CHILD THAT HAD
A BREAN TUMOR AND SUCCUMBED TO
IT AND INIA A VIDEO CHALLENGED
THE COMMUNITY AT LARMING TO STOP
TALKING AND START DOING AND I
THINK IF IF YOUR 10 YEAR-OLD
WITH A BRAIN TUMOR, YOU CAN ALSO
CURSE ON CAMERA WHICH SHE DID,
AND THEY TOOK IT TO THE NEXT
LEVEL.
NOT ONLY ARE YOU GOING TO WORK
ACROSS ALL PEDIATRIC CANCER, WE
WILL BRING IN STRUCTURAL DEFECT
ANDS CONGENITAL ABNORMALITIES.
I REMEMBER THE FIRST MEETING WE
HELD FOR THE INITIAL AWARDEES OF
SOME OF THE RESOURCES AT THE END
OF THE MEETING, 2 PROMINENT
PEOPLE CAME UP TO ME, BY CHANCE
FROM THE RESPECTIVE SIDES AND
THEY SAID ADAM FOR THE NEXT
MEETING CAN WE HAVE THE CANCER
PEOPLE HAVE THEIR MEETING AND
THE STRUCTURAL BIRTH DEFECTS
HAVE THEIR MEETING, IT DOESN'T
MAKE SENSE TO HAVE US IN THE
SAME ROOM.
THEY DON'T KNOW WHAT THEY'RE
TALKING ABOUT, LITERALLY THEY
SAID THAT, IT WAS A BIAS, CANCER
PEOPLE WERE FOCUSED ON SOMATIC
OPERATIONS.
AND THE STRUCTURAL 1S WERE
TALKING ABOUT GERM LINE
ALTERATIONS.
IT WAS 2 DIFFERENT CONTEXT.
IT TOOK US TIME TO BUILD THE
NEXT ITERATION OF INFRASTRUCTURE
THAT CROSS-EMPOWERED THAT
DISCOVERY, RIGHT?
WHERE SOMEONE WHO NORMALLY
WOULDN'T LOOK AT A SOMATIC
ALTERATION IN CANCER WILL
SUDDENLY DISCOVER, HEY, A YEN
THAT CAUSES CANCER IS ALSO A
GERM LINE IMPLICATED YEEP,
PERHAPS IN OPPOSITE DIRECTION
AND SUDDENLY THAT REALITY OF A
COMMON INFRASTRUCTURE THAT
SUPPORTS SHARED QUERY-ABILITY
ACROSS RESOURCES EMERGED.
THIS WILL NEVER HAVE HAPPENED IF
IT WASN'T FOR THE NIH-BASED
VISION.
THE COMMUNITY ITSELF WILL NOT
TAKE THOSE STEPS ON THEIR OWN
AND I THINK THAT'S A REALLY
UNIQUE CONTEXT THAT WAS A
LEARNING EXPERIENCE FOR ME, THAT
PLATFORMS NOT ONLY SUPPORT AND
ENHANCE COORDINATION, BUT
EXTREMELY POWERFUL TO BRENG
TOGETHER PEOPLE WHO MAY NOT UPON
EACH OTHER RIGHT IN THAT
CONTEXT.
YOU ARE TO ADDRESS A NUMBER OF
SETTINGS, MOLECULAR DATA SETS,
DISEASE CONTEXT AND DEC
CONDITIONS THAT WERE NOT RELATED
AND THEY CAN JOINTLY SHARE
QUERIABLE BY COMMUNITY, SO TODAY
WE HAVE MORE THAN 21,000 WHOLE
GENOMES IN THIS PLATFORM ACROSS
MORE THAN 6000 PHENOTYPES.
MANY ARE PHENOTYPES THAT THIS
AREA CARE ABOUT, AND VERY FEW
PEOPLE HAVE QUERIES ABOUT THOSE
DATA SETS, AND THEY INCLUDE
CHANGES IN THE PLATFORM WHICH IS
A PARTNERED ENVIRONMENT HERE.
THIS IS 1 OF THE LARNLEST WHOLE
GENOME AND MOLECULAR DATA SETS
FOR PEDIATRIC CANCER AND
STRUCTURAL BIRTH DEFECTS AND
ADOPTS THE FOLLOWING PRINCIPLES
THAT WE'RE STILL STRIVING TO
ACCOMPLISH, SO AMOUNT OF
EXPERIENCE BEING TRANSPARENT
WITH YOU, THIS IS OUR REACH
GOAL, WE HAVE NOT YET REACHED
IT, BUT OUR LEARNED EXPERIENCES
IF YOU DO THE FOLLOWING, RIGHT,
YOU ENGENDER SCIENTIFIC WAYS YOU
WOULDN'T HAVE EXPECTED.
IT'S NONLOCAL, IT'S NOT ABOUT
BEING IN THE SAME INSTITUTION OR
SAME UNIVERSITY.
YOU HAVE MACK MYSELF THE NUMBER
OF INFORMATION USED FOR YOUR
GOAL AS A PLATFORM OPERATOR
SHOULD BE TO BRENG AS MANY
DIFFERENT PEOPLE TO THE PLATFORM
AS POSSIBLE.
RIGHT?
TYPICALLY THE OPPOSITE OF MOST
DATA PLATFORMS THAT SAYS, OKAY,
I'M GOING TO GATE KEEP THE DATA
FOR A CERTAIN PURPOSE, RIGHT?
YOU ACTUALLY MEASURE SUCCESS BY
INCREASING THE NUMBER.
AT THE SAME TIME THAT YOU'RE
INCREASING THE NUMBER, YOU WANT
TO INCREASE THE DIVERSITY,
RIGHT, BECAUSE YOU ESSENTIALLY
WANT TO ENGENDER DIFFERENT
DISCIPLINES, WHERE I CAN TALK
DIFFERENTLY ABOUT DATA AND USE
DIFFERENT DATA DIFFERENTLY TO
ACTUALLY BUMP INTO EACH OTHER IN
THE VIRTUAL DOMAIN, THIS IS 1 OF
THE HARDEST CHALLENGES, I THINK
I WAS TALKING TO SOMEBODY
EARLIER HERE TODAY WHO SAID
THEY'RE WORKING ACROSS
BIOINFORMATICIANS AND
CLINICIANS, THEY SPEAK
COMPLETELY DIFFERENT LANGUAGES,
RIGHT, ABOUT THE EXACT SAME
PATIENT, RIGHT?
AND THEN TO DO THAT, YOU HAVE TO
SUPPORT FRAMEWORKS THAT CONNECT
NATURALLY BETWEEN THESE
COMMUNITIES AND ACHIEVE AND THIS
IS OUR GOAL FRICTIONLESS FLOW OF
DATA.
THE FLOW OF DATA MEANS A COUPLE
DIFFERENT THINGS HERE, 1 CAN
SOMEONE ACTUALLY FIND DATA AND
KNOW IT'S THERE, USE IT, TOUCH
IT, PLAY WITH IT, AND CAN PEOPLE
DO THAT TOGETHER.
SO THIS IS THE WORK FLOW WE
STRIVE TO ACHIEVE AND BY AND
LARNL YOU COULD DO THIS TODAY ON
THE KIDS FIRST PLATFORM OR THE
INCLUDE PLATFORM.
ANYBODY CAN LOG ON AND FIND OUT
WHEN'S IN THE DATA RESOURCE AND
THEN THEY CAN NAVIGATE AND
EXPLORE THE DATA ACCESS.
MOST PEOPLE WANT TO DO IS FIGURE
OUT WHAT'S THERE.
THEY WANT TO CREATE COHORTS
BASED ON WHAT THEY CARE ABOUT.
OUR BIGGEST CHALLENGE IS THAT
MOST PEOPLE DON'T KNOW WHAT
QUESTIONS TO ASK RIGHT, IT'S AN
ITERATIVE PROCESS, I DIDN'T KNOW
YOU HAD THIS TOO, OR THAT.
SO SEARCH SPACE FOR PEOPLE IS
UNDEFINED, THATIA A CHAL ENK AND
I WILL COME BACK TO THAT AT THE
END.
THE OTHER CHALLENGE A DATA CHEKS
PROCESS IS VERY HETEROGENERATED
A USE, SOME PEOPLE COLLECT FROM
EHR, SOME PEOPLE HAVE
INSTRUMENTS, CRFs THEY
DESIGNED THEMSELVES, NOBODY
ADOPTED A CENTRALIZED MODEL
ACROSS ALL PEDIATRIC CANCERS AND
STRUCTURAL BIRTH DEFECS SO WE
HAD TO IMPLEMENT FRAMEWORKS THAT
STILL ALLOWED A GENO TYPE TO
PHENOTYPE CONNECK.
YOU CAN IMAGINE SOMEONE LIKE ME
WHO THINKS ABOUT BRAIN TUMORS, I
NOTICE A KID HAS A BIRTH DEFECT
IN THE HEART, I WILL SAY YEAH, A
CARDIAC BIRTH DEFECT BUT A KID
THAT MIGHT BE SEEN FOR A CARDIAC
BERTH DEFECT WILL HAVE VERY WELL
DEFINED WHICH PART OF THE HEART,
WHAT TYPE OF DEFECT IT IS THOSE
ARE DIFFERENT TERMINOLOGIES THAT
WOULD NORMALLY INTERSECT BUT
THEY WOULD HAVE THE SAME
DPENETTIC BASIS AT THE GENOME
LAYER SO YOU HAVE TO POWER THE
CONNECTIVITY OF RESOURCES.
AND WE DID THIS THROUGH
LEVERAGING ONTOLOGIES IN WAYS
THAT'S VERY VISIBLE.
AND JUST FOR FUN I SAW I'M DOING
THIS HERE, I WILL SHOW YOU AN
EXAMPLE OF THIS, I THINK I'M
LOGGING INTO THE INCLUDE
PLATFORM HERE, I THINK?
OKAY, HERE WE GO.
SO I'LL DO A PHENOTYPIC SEARCH,
I WILL CLICK ON PARTICIPANT AND
I DO IT THROUGH A COUPLE
DIFFERENT ONTOLOGIES, EITHER
THROUGH DIAGNOSIS ONTOLOGY,
CALLED MONDOOR, OR PHENOTYPIC
ONTOLOGY, BUT LET'S JUST TRY 1,
I CAN SEARCH FOR HEARING OTHERS
RIGHT?
SO YOU WILL SEE THIS TREE EXPAND
AND WHAT YOU WILL SEE IS NUMBERS
HERE ACROSS THIS, IS WHAT THIS
MEANS ESSENTIALLY IS THAT ON THE
LEFT HAND COLUMN, THAT'S THE
EXACT WAY THAT SOMEONAN OITATED
THAT PATIENT, RIGHT?
THEY ACTUALLY ANNOTATED IT AT
THAT LEVEL BUT AS YOU GO UP YOU
WILL SEE THAT THE NUMBERS ON THE
RIGHT GET BIGGER AND THAT'S
BECAUSE WE'RE SUMMING UP, RIGHT,
SPECIFIC PHENOTYPES WITH OUR
LAST PHENOTYPES AND SOMEONE CAN
TAKE THIS COHORT AND APPLY IT
AND GET ALL 25, 2000 SUBJECTS IN
THIS COHORT, BIOSPECIMENS THEY
HAVE, WHAT DATA THEY HAVE AND
THEN OPERATE ON THAT DATA MOVING
FORWARD SO THEY CAN SELECT THIS
DATA AND BRING IT INTO A CLOUD
ENVIRONMENT AND ANALYZE IT I
DON'T KNOW HOW MANY PEOPLE HERE
HAVE EVER LOGGED ON TO A CLOUD
TO ANALYZE GENOMIC DATA,
HOPEFULLY SOME BUT IT TURNS OUT
THAT'S NOT AS LARGE A GROUP OF
PEOPLE AS PEOPLE WHO HAVE
BENEFITS FROM SOMEONE WHO'S DONE
THAT ALREADY AND CREATED AN
EXCEL SHEET FOR THEM WITH ALL
THE INFORMATION IN THERE.
THE KEY PART IS YOU HAVE TO HAVE
A CENTRALIZED ENVIRONMENT FOR
ANALYSIS, IN ORDER TO MAKE
SHAREABLE EXCEL SHEETS THAT
INTEGRATE HARMONIZED DAILY BASIS
THEA BECAUSE YOU WANT THE NEXT
PERSON'S NOT INCLUDED TO ADD
THEIR DATA INTO YOUR EXCEL SHEET
ISSUES THE OHM WAY THEY CAN DO
THAT IF THEY EARN THE SAME
PIPELINE, WORK FLOWS TO
INTERSECT.
SO THE PLATFORM LEVERAGES TO
CLOUD NOT JUST BECAUSE THE DATA
ARE LARGE BUT BECAUSE A CLOUD IS
A FRAMEWORK FOR HARMONIZATION
AND INTEGRATION OF DATA EVEN IF
THE DATA ARE SMALL, YOU CAN
CONNECT TO AND BE CONTEXTUALIZED
IN THE CONTEXT IN THE LONGER
TERM.
I PUT THIS SLY UP SO YOU CAN SEE
THE CASE, YOU CAN ALSO DO THIS
FROM THE GENOMIC SIDE AND THE
GENOMIC SIDE IS A REAL EXCITING
FRAIRM WORK BECAUSE IT TURNS OUT
THAT IF YOU PUT A GENE OF
INTEREST BECAUSE OF THE WAY THAT
THE FRAMEWORK IS STRUCTURED, YOU
WILL IMMEDIATELY FIND THAT THAT
JEEP IS IMPLICATED POTENTIAL IN
MANY OTHER CONTEXT YOU WERE NOT
INTERESTED IN, RIGHT, BIOLOGY IS
SUFFICIENTLY CONSERVATIVE THAT
YOU WILL SEE THESE COMBINATIONS
OF PHENOTYPES AND GENO TYPES
THAT OVERLAP, AND THAT'S A
POWERFUL FRAMEWORK TO BEGIN
PRIORITIZING WHICH GENES MATTER
FOR YOU OR SOMEBODY ELSE, IF
SOMEONE WITH DOWNS SYNDROME HAS
A CERTAIN PHENOTYPE, ANOTHER 1
DOESN'T HAVE THAT CERTAIN
PHENOTYPE, YOU AREN'T
NECESSARILY THINKING ABOUT DOWNS
SYNDROME BUT 1 OF THEM HAD
HEARING LOSS OR DIDN'T ISSUES IT
STARTS OVERLAPPING WITH YOUR
SPECIFIC INTEREST IN THE
PHENOTYPE GENETIC CONTEXT.
GANNA, SHARE WITH YOU THE HARD
PARTS.
THE HARD PARTS ARE THAT THE
OPPORTUNITY FOR DATA GENERATION
HAVE EXPONENTIALLY GROWN SO WE
CAN GENERATE DATA ON SAMPLES IN
AN INCREASINGLY LONG RAINCHL, WE
CAN SHORTEN, LEPGHTEN, CREATE
EACH OF THOSE AND THEY EACH OF
THOSE LAYERS HAS ANOTHER 5 OR 6
LAYERS THAT THE GENOME CAN BE
DUPLICATED OR TRANSLOCATED OR
HAVE A SINGLE PULL MUTATION FOR
THE EXPONENTIAL COMPLEXITY
ACROSS EACH DATA MODALITY AND
EACH LAYER OF INTERPRETATION, IT
TURNS OUT THAT PROTEOMISTS,
DON'T TYPICALLY STUDY GENOMES,
AND GENOMISTS DON'T TYPICALLY
STUDY PROTEOMES.
EVEN IN GENOMICS SPACE PEOPLE
STUDY RNASEQ VERSUS OTHER DATA
MODALITIES AND HISTORICALLY
THAT'S LED TO PLATFOR THE
PURPOSES THAT ARE DATA MODALITY
SPECIFIC.
PREVENTING MULTIMODAL ANALYSIS
FROM FULLY GETTING TO A WORK
SPACE.
EVEN WORSE IS WHEN YOU ADD THE
DIVERSITY OF CLINICAL DATA AND
EVEN WORSE IT TURNS OUT THERE
ARE NOT A LOT OF NEUROSURGEONS
WHO SPENT 17 YEARS TO BECOME A
NURSE OR WHO ALSO SPENT
ADDITIONAL YEARS TO BECOME A
DIOINFORMATICIAN, SO THEY SPEAK
COMPLETELY DIFFERENT LANGUAGES
FROM THE CLENICAL END PUCTURE
YOU'RE TRYING TO HELP AND THE
DATA LANDSCAPE AND THEY ASK
QUESTIONS VERY DIFFERENTLY, IT'S
VERY CHALLENGING TO CREATE A
FARM WORK THAT'S BOTH POINT AND
CLICK FOR SOMEONE WHO'S NOT A
DATA SCIENTIST AND, RIGHT,
COMMAND LEAN AND USER INTERFACE
FRIENDLY FOR BIOINFORMATICIANS.
THIS IS STILL AN ONGOING PROCESS
FOR US.
LET ME GIVE YOU A COUPLE MORE
ENDING SLIDES AS ADDITIONAL
CONTEXT OF WHERE WE'RE TRYING TO
HEAD.
KIDS FIRST BEGAN WITH WITH
COHORTS THAT HAD BEEN CREATED BY
VERY LONGS, AND THE GOAL WAS TO
CREATE A SINGLE POINT IN TIME
OMIC DATABASE THAT'S LINKED TO
THE EXISTING PHENOTYPES.
IN REALITY, RIGHT, PHENOTYPES
CHANGE ACROSS TIME.
AND SO WE MIGHT HAVE GOTTEN A
SNAPSHOT OF THAT PATIENT OF
WHATEVER TIME THEY WERE,
COLLECTED THE SESMLE AND
ADJUDICATE FOR THIS PURPOSE BUT
INVARIABLILY THE MINUTE SOMEONE
HAS A FINDING, THE NEXT QUESTION
THEY'RE GOING TO ASK IS WELL,
WHAT HAPPENED INCOME ACCIDENT
WHAT WERE THEY TREATED WITH,
WHAT WERE THE OUTCOMES AND IT
URNS OUT THESE COMMUNITIES ALSO
ASK QUESTIONS IN VERY DIFFERENT
WAYS, RIGHT IN THE PEOPLE WHO
ARE CLINICAL INFORMATTISTICS,
WHOSE BREAD AND BUTTER RIGHT, IS
COLLECTING CLINICAL DATA FROM
THE HEALTH RECORS AND CREATING
THIS FRAMEWORK, THEY CREATE
INFRASTRUCTURES THAT ARE
TYPICALLY SEGREGATED FROM
MOLECULAR DATA SETS, INTEGRATING
THOSE INTO A COMMON CONTEXT IS
STILL A NEW ENDEAVOR FOR MOST OF
THE SCIENCE BECAUSE A GENOME
CYSTS OF DATA AS POINT IF TIME,
YOU ONLY HAVE 1 GENOME, YOU
MIGHT GET LUCK EXPE HAVE 2
SAMPLES COLLECTED IN TIME IF
THERE WAS A RECURRENCE, WE MIGHT
GET LUCKIER IF WE HAD A LIQUID
DAILY BASIS THEA BIOPSY BUT IT'S
NOT A TREME LIKE HEALTHCARE IS
IN THE CONTEXT BUT THE MINUTE WE
FIND ANYTHING, THE ONCOLOGIST
ASKS WHAT WERE THEY TREATED
WITH, FOR HOW LONG WERE THEY
TREATED TOGETHER WITH THOSE
SAMPLES SO WE'RE STARTING TO
THINK ABOUT HOW TO CREATE THESE
VIEWS, SO THIS IS A VIEW OF A
PATIENT WHERE YOU'RE ANNOTATING
SAMPLE COLLECTIONS ACROSS TIME
BECAUSE THE PATIENT HAS
RECURRENCE, WHICH DRUGS THEY
WERE RECEIVING BECAUSE YOU
SUSPECTED DRUGS INTERSECT WITH
THE BIOLOGY OF THE TUMOR AND
PATIENT.
AND OTHER ENCOUNTER EVENTS LIKE
IMAGES, MRIs OR PATHOLOGY
EVENTS AND YOU CAN SEE THAT THE
DATA GETS MORE COMPLICATED RIGHT
HERE, EACH OF THESE NUMBERS ON
THE LEFT IS A SAMPLE AND IT
TURNS OUT THAT THE TUMOR CHANGES
ACROSS TIME YOU ONLY GET THE
MUTATION AND THE SAMPLE DOESN'T
EXIST ON TABLE 1, 2, OR 3, AND
WHAT DO YOU DO WITH THAT, MOST
CLINICAL PRACTICES DON'T HAVE AN
ANSWER FOR THAT CAN THAT'S THE
OTHER CHALLENGE.
OUR CAPACITY TO GENERATE AND
INTERPRET DATA HAS OUT STRIPPED
THE CLINICAL CAPACITY TO SAY IF
I HAVE THIS, I DO THAT.
HOSPITAL SYSTEMS BY AND LARNL
ARE BUILT AS A BINARY FRAMEWORK,
YOU'RE POSITIVE FOR SOMETHING,
YOU'RE NEGATIVE FOR SOMETHING,
IF THIS OCCURS, YOU GET THIS.
SUDDENLY BIOMEDICAL HEALTH AND
GENERATING DAILY BASIS THEA
THAT'S NOT BINARY IN THAT
CONTEXT, AND THIS IS WHAT WHERE
PRECISION MEDICINE THRIVES.
I HAVE NOT YET BEEN TO A SINGLE
HOSPITAL THAT CAN ASK THE
FOLLOWING QUESTION: LET'S TAKE
BRAIN TUMORS AS A CONTEXT.
SHOW ME ALL BRAIN TUMORS I HAVE
TREATED THROUGH MY EPIC
INTERFACE THAT LOOK LIKE THIS
PATIENT?
AND LOOK LIKE THIS PATIENT COULD
BE THEIR MRI LOOKS THE SAME,
OUTCOME WAS THE SAME, MOLECULAR
DATA SET WAS THE SAME, THIS IS
THE KEY CHALLENGE THAT PRECISION
MEDICINE'S TRANALATION REQUIRES
INFRANCIS
IN--INFRASTRUCTURE THAT'S
COMPUTATIONALLY LINKED.
RIGHT NOW IT'S OPERATIONALLY
DRIVEN, NOT ANALYTICALLY EMPLOY
THE ANALYSIS HAPPENS IN THE
DOCTOR'S HEAD BASED ON WHAT THEY
KNOW, REMEMBER AND EXPERIENCE.
PRECISION MEDICINE REQUIRES THAT
NEXT LAYER OF INTERACTIONS
BETWEEN THAT PATIENT'S DATA
WHICH SUDDEN LOAMACYY IS MORE
COMPLEX, PART OF IT'S NOT
INTERPRETTAABLE BUT MIGHT BE
TOMORROW WHEN THE NEXT PATIENT
COMES ALONG AND LOOKS LIKE THAT
PATIENT, YOU HAVE THE FRAMEWORK
OF ANALYSIS AROUND PATIENTS SO
THAT CLINICIANS CAN INTERPRET
THEM IN THAT SETTING.
BUT THAT'S AN EXCITING ENDEAVOR
TO THINK ABOUT THEPABILITY OF
LARGE SCALE DATA SETS AND
INFRASTRUCTURE CREATED FOR
RESEARCH BECOME PROXIMAL TO
CARE.
AND I THINK THAT'S 1 OF THE
HARDEST LESSONS I LEARNED.
IT TURNS OUT THAT IF YOU ASK ANY
PAIBT ON OUR CLINICAL TRIALS OR
FOR WHICH YOU COLLECT SAMPLES,
THEY'RE NOT DIFFERENTIATING
BETWEEN TUMOR RESEARCH AND CARE,
RIGHT?
A MOTHER WHO'S CHILD HAS A BRAIN
TUMOR, RIGHT, THE CONTRACT SHE
HAS WITH US AS SCIENTISTS IS,
YOU ARE DOING EVERYTHING THAT'S
POSSIBLE TO ADVANCE THE
POTENTIAL FOR NEW THERAPY, SO
SUDDENLY YOU GET THIS
REQUIREMENT FOR RESEARCH TO BE
EXTREMELY CLOSE AND PROXIMAL TO
CARE IN THE ABSENCE OF
POTENTIALLY ESTABLISHED
STANDARDS OF CARE, RIGHT FOR
MANY DISEASES, YOU DON'T HAVE A
STANDARD OF CARE, WE HAVE A
THERAPEUTIC OFF THE SHELF MENU.
EMPOWERING THAT IS WHAT PARENTS
AND PATIENTS WANT, THAT'S WHAT
WE HAVE TO BUILD ON BEHALF OF
THESE RESEARCH FRAMEWORKS, WHILE
AT THE SAME TIME WE'RE DRIVING
RESEARCH.
THE OTHER INCREDIBLY INFORMATIVE
PART OF MY STUDIES WAS THAT I
WILL HAVE IMAGES, FEATURES
ACCIDENT EACH COMMUNITY THINKS
ABOUT DATA DIFFERENTLY, HOW IT'S
STRUCTURED AND THE INFORMATION
THAT GOES INTO IT, I THOUGHT IT
WAS WORTH WHILE ESPECIALLY HERE
TO BRING A LAYER THAT'S ALMOST
ALWAYS ABSENT FROM THE DATA SETS
WE GET.
WHEN A RADIOLOGIST LOOKS AT AN
MRI OR A HISTOLOGIST LOOKS AT A
HISTOLOGY SLIDE, THEY BECOME
STORY TELLERS.
THEY WRITE THESE VERY LONG
NARRATIVES.
RIGHT?
WHEN AN ONCOLOGIST WRITES A PLAN
FOR A PEASHT'S CARE, THEY WRITE
A STORY FOR THAT PATIENT.
IT'S EMBEDDED IN THE CARE IS
ABSENT FOR MOST OF OUR DATA, MY
COORDINATOR WILL LOOK AT THIS,
PICK UP A COUPLE OF WORDS AND
PUT THEM INTO MY DATABASE THAT'S
MISSING THIS FROM THE DATA LET
ALONE WHEN WE FIRST STARTED
TRYING TO TAKE AND PUT IT IN THE
SAME PLACE FOR THE GENOMICS
DATA, NO RADIOLOGIST TOUCHED
THEM.
IT TURNS OUT THAT JUST EACH THE
WAY THE FILES ARE STRUCTURED,
HOW THEY'RE COMBINED,
RADIOLOGIST EXPECTS A SERIES OF
SESSIONS RIGHT WHICH SCAN DID
THEY GET ALL AT 1 TIME SO EACH
PATIENT FOR A SINGLE EXPERIMENT
MIGHT HAVE HUNDREDS OF SESSIONS
FILES A GENOMISTS XEBS TO SEE 2
OR 3.
A DENATIONAL LIBRARY OF MEDICINE
CYST WORKS ON THE FILE AND HOW
THEY'RE AVAILABLE FOR COMMUNITY
AND REQUIRES A COMMON SET OF
INFRASTRUCTURES TO WORK TOGETHER
AND SO WE STARTED CATERING TO
THAT AND SAYING WHICH PLATFORMS
HAVE RADIOLOGISTS HAVE THEM ON
THEM, LET'S BRENG THEM IN, BUT
WHETHER YOU LEARN THAT LESSON IN
THE PAST, WE DON'T WANT
THEERATEIOLOGYIST WORKS IN 1
PLACE AND THE GENTLEMEN WORKS IN
ANOTHER, THEY WILL MAKE THEIR
SEPARATE DISCOVERIES AND NEVER
TALK.
WE HAVE TO MAKE THE PLATFORMS
ACTUALLY HAVE NOTIONS OF
COMBINED PROGECS IN A COMMON
PLACE, CREATE WORK FLOWS, CREATE
GENERATED SETTIC DATA AND
ROUTING THAT ENTIRE DATA TO
CREATE THE SHARED PROJECT BUT
THE RESULTS CAN BE INTEGRATED
FOR ANALYSIS IN A COMMON WORK
SPACE.
I THOUGHT GENOMICS AND DATA
ANALYTICS WAS HARD, IT WASN'T
UNTIL WE TRIED EXPANDING OUR
FOOTPRINT ARK ROUND CLINICAL
DATA THAT WE REALIZED HOW HARD
CLINICAL VARIABLES ACTUALLY ARE,
I MENTIONED OUR GOAL WAS TO SAY
RECOGNIZING THE CLINICAL DATA IS
CONTINUOUS, A BRAIN TUMOR
PATIENT MIGHT HAVE SURGERY TWICE
AND CREATE THE FILE.
HOW DO WE CREATE THE REAL
FRAMEWORK OF DATA FLOW.
UP UNTIL NOW MOST PEOPLE DO IT
IN A HUMAN WAY.
WHAT I MEAN BY THAT IS LITERALLY
HUMAN, LOOKING AT THE EPIC OR
ELECTRONIC HELT RECORANDS
COPYING AND PASTING OR WRITING
INFORMATION THAT THEY SEE THERE
AND TURNINGS OUT HUMANS ARE
PRETTY CRAPY AT THAT AT SCALE,
HUMANS MAKE MISTAKES.
THE ONLY WAY TO COMBAT THAT IS
TO HAVE RECOLLECT HUMANS CHECK
THEIR ERRORS AND COMBAT THAT.
OVER THE PAST 10 YEARS
ESSENTIALLY BETWEEN THE
HIGH-TECH ACT OF 2009 AND UNDER
THE OBAMA ADMINISTRATION AND
LAST YEAR WITH THE NONBLOCKING
RULE OF THE NATIONAL OFFICE OF
THE CONTROLLER COORDINATOR
THERE'S BEEN A TRANSFORMATION IN
THINKING ABOUT HEALTHCARE DATA
IS STRUCTURED, MANY OF YOU MAY
HAVE YOUR IPHONES CONNEBBED TO
YOUR MY HEALTH APP, THAT'S
REQUIRED FOR THOSE STATEMENTS
AND DATA TO COME OUT IN AN
OVERQUAL FBIED WAY.
IT'S OVERSELLING IT, IT'S NOT
UNIFIED BUT IT'S AVAILABLE TO
PEOPLE WHO MAKE TOOLS THAT CAN
UNDERSTAND WHAT'S COMING OUT OF
THE ELECTRONIC HEALTH RECORD OR
THE EXCHANGE FORMAT WHICH IS
WHAT FHIR STANDS FOR.
SO WE'VE BEEN PILOTING THIS OVER
THE LAST 6 MONTHS THEN, SO CHOP
WILL GO TO SEATTLE AND UCSF,
WHAT DOES IT TAKE FOR DATA TO
JUST STREAM FROM THE ELECTRONIC
HEALTH TREATMENT AND THE
GOVERNMENT SAYS YOU HAVE TO DO
THIS AND IT TURNS OUT IT DOESN'T
REALLY HAPPEN FULLY WE HAVE TO
GO THROUGH HAYERS OF IMP
LEMMATION, ADDITIONAL TOOLS BUT
NOW WE CAN, WE'VE PROVEN WE CAN
CREATE FRAMEWORK FOR REALTIME
DATA EXCHANGE, THE PATIENT SHOWS
UP, THEY'RE CONSENTED, DATA
FLOWS, INSTEAD OF PULLING DATA,
DATA GETS PUSHED, GETS PUSHED ON
BEHALF OF PATES PATES--PATIENTS
CONSENTED AND WANT THAT
INTERNATIONAL CLASSIFICATION
IMRAITED.
THE NEXT LAYER TO LEVERAGE THE
SAME INTEROPERABILITY FRAMEWORK
TO BRING DATA BACK IN, RIGHT?
, CAN YOU IMAGINE DATA GOING
OUT, ANALYZED, ANSWERING
QUESTIONS, WHAT THE OTHER PATES
AT CHOP OR ANYWHERE ELSE THAT
LOOK LIKE THOSE PATIENTS EMPLOY
THOSE MRIs, FLOWING INTO A
FRAMEWORK WHERE THE SYSTEM
MEASURES BIOMETRICALLY
AUTOMATICALLY, THE SIZE OF THE
TUMOR, THINGS THE HUMAN MAY NOT
HAVE SEEN AND THAT ANALYSIS THEN
FLOWS BACK THROUGH THAT SAME
PIPE BECAUSE PIPE IS
BI-DIRECTIONAL AND THE SAME GOES
THROUGH THOSE DIRECTIONS, WHEN
CHAT GPT KEAM UP, I BECAME A
CHATGPT FANATIC, NOT THE LEAST
OF WHICH BECAUSE IT COULD WRITE
THINGS IN WHATEVER FORMAT I
WANTED SHAKES SPEAR OR OTHER
WISE OR BECAUSE MY KID
STARTEDUING IT FOR MANY
TEENAGERS WERE USING IT FOR THAT
THEY SHOULDN'T HAVE BUT BECAUSE
I SAW THE POTENTIAL FOR 1 OF OUR
BIGGEST BARRIERS AND I MENTIONED
IT EARLY ON, AS I GO TO THE
PORTALS YOU HAVE TO KNOW WHICH
BUTTON TO CLICK ON TO FIGURE OUT
THAT SEARCH SPACE, IF YOU'VE
DONE IT A FEW TIMES AND YOU LOST
A VIDEO, YOU LEARN HOW TO DO
THAT BUT WHAT A CLINICIAN REALLY
WANTS TO DO IS ASK THE QUESTION,
RIGHT?
WE'VE HAD THIS MUTATION, THEY'LL
SAVE IT IN THE ORDER, THEY WANT
TO COMMUNICATE WITH THE DATA
CHATGPT IS TAKEN THAT FRAMEWORK
OR PREDICTABILITY, LAYERED THAT
STRUCTURE ON DATA AND AS LONG AS
THERE'S STRUCTURE, THE SYSTEM
UNDERSTANDS IN FACT IF ANY OF
YOU HAVE EVER QUERIES A
DATABASE, YOU WOULD HAVE TO USE
SOMETHING LIKE SEQUEL OR
SOMETHING COMPLEX WHERE YOU
TRANALATE YOUR HUMAN LANGUAGE
INTO COMPUTER LANGUAGE TO IRPT
ACT WITH IT.
WHAT THE GPT DID IS IT CAN DO
THAT FOR YOU, IT UNDERSTANDS
FHIR, IT UNDERSTANDS READING
[INDISCERNIBLE] ON FILES, IT CAN
DO THE FOLLOWING, CAN YOU ASK
THAT QUESTION, SHOW ME ALL
PATIENTS THAT ARE SIMILAR TO
THIS AND THEY'LL ASK BACK, DO
YOU MEAN BY MRI AND DO YOU MEAN
GENOMEICALLY, LET'S DO BOTH
IT'LL HAVE THAT INTERACTION WITH
YOU BAGSED ON THE COMMUNICATION,
THE LAYER BETWEEN A QUERY AND A
DATA SET, IS THE LAST BARRIER TO
ENTRY FOR DISCOVERY, RIGHT?
THAT'S THE PART, RIGHT THAT
WE'RE POSITIONING ALL THESE
RESOURCES FOR SO WE'RE DOING
THIS PILOT OF BRINGING THE DATA
OUT IN REALTIME BUT IT'S
ENTERING A PLACE WHERE A GPT
TRANSFORMER AND WE WILL PAIR
THIS, AND CAN DETERMINE
AUTOMATICALLY UNDERSTAND WHAT
DATA IS THERE AND WE WILL SEE IF
I CAN ASK A QUESTION OR YOU CAN
ASK A QUESTION, JUST ASKING THE
QUESTION, SO SUDDENLY THE
DASHBOARD OF ALL THESE BUTTONS
YOU HAVE TO CLIM, ALL THE
FACETTED SEARCH, MAYBE THEY GO
AWAY, OR MAYBE THEY GO TO THE
RECEIVING BACKGROUND AND YOU
JUST ASK YOUR QUESTION, HAVE YOU
A CONVERSATION WITH THE DATA.
I'M SURE MANY OF YOU HAVE HEARD
ABOUT THE DANGERS AND RISKS OF
THIS, I STARTED THIS HERE FOR MY
KID, MY KID HAS KNOWN I WORKED
FOR THE LAST 15 YEARS, HE NEVER
LOGGED ON TO ANY OF OUR PORTALS
EACH THOUGH I PROMISED HIM
THERE'S NO MATH ON IT, RIGHT?
YOU CAN IMAGINE THE CONVERSATION
EVEN MORE PERSONALIZED, RIGHT?
I CAN HAVE THE CHAT, LITERALLY A
CHAT VERSION CALLED GENZ-SPEAK
WHERE IT WILL TALK TO YOU IN
GEN-Z, MAYBE THAT WILL BE THE
NEXT BARRIER TO ACTUALLY GET A
TEENAGER TO LOG ON TO A PLATFORM
THAT'S OPEN, BUT THE PART THAT I
LOVE THE MOST IS THAT EVEN
THOUGH CHAT GPT OR OTHER CANS
HALLUCINATE BECAUSE ALL THEY'RE
DOING IS PREDIBTING WORDS WHAT
THEY CAN DO IS CONNECK TO THINGS
THAT DON'T HALLUCINATE.
SO CAN YOU TAKE A KNOWLEDGE
FRAMEWORK, A DATABASE AND ASK
THE QUESTION, NATURAL LANGUAGE
WISE, AND THE GPT TRANSFORMER
WILL UNDERSTAND WHAT YOU WANT TO
KNOW, WILL KNOW WHERE TO GO AND
IT WILL WRITE THE CODE TO GET IT
AND BRING IT BACK TO YOU.
THAT IRPT ACTION BETWEEN
KNOWLEDGE OR ACTUALLY
STRUCTURED, FRAMED, VETTED AND
THE LAYER OF LANGUAGE, YOU CAN
COMMUNICATE WITH IT AND THE
TRANSFORMATIVE MOMENT, RIGHT,
FOR SCIENTISTSA THE LARGE.
TRULY IDEALIZES THE CONTEXT IN
WAYS I AM SUPER EXCITED ABOUT.
AND IN FACT, LEAK WHEN I SHOWED
PORTAL TODAY TO YOU, RIGHT,
THERE'S A PART OF ME THAT HURTS
BECAUSE I KNOW IT'S ALREADY NOT
RELEVANT, RIGHT IN BECAUSE THIS
IS THE NEXT WAVE OF INTERACTING
WITH DATA IT'S AN AMAZING PORTAL
AND I DON'T WANT TO SAY
OTHERWISE, BUILT BY AN AMAZING
TEAM BUT YOU CAN ALREADY SEE THE
DYNAMIC INTERACTION BETWEEN DATA
SOURCES, HOW THEY INTERCONNECT,
WHO ASKS THE QUESTIONS AND THEY
GET COMPLETELY TRANSFORM.
FOR ME THAT'S ENTIRELY AMAZING
EMPLOY AND IT FULFILLS A PHRASE
I TRY TO SAY IN ALL MY TALKS
WHICH IS PROMISE WE GIVE TO
PATIENT FAMILIES.
THE 21st CENTURY PROMISE IS
THAT IF YOU CAN MEASURE IT, YOU
CAN UNDERSTAND IT, IF YOU CAN
UNDERSTAND IT, WE CAN INTERVENE
WITH IT.
THAT'S THE PROMISE AND IF THAT'S
TRUE, THEN OUR JOB IS TO
ACCELERATE THAT PROCESS THRIE
THROUGH TECHNOLOGY, IF YOU TAKE
THAT AS FACT, RIGHT, YOU CAN
MEASURE IT, YOU UNDERSTAND IT,
THEN YOU CAN CHANGE IT, BUT
THAT'S THE TRUISM, THEN
EVERYTHING SHOULD ORIENT TOWARDS
ACCELERATING THE FRAMEWORK AND
THE TECHNOLOGY FRAMEWORK THAT
DATA SCIENCE BRINGS IS AT OUR
HANDS.
IT TURNS OUT WE WEREN'T THE
FIRST PEOPLE TO TRY TO DO THAT,
I WILL FINISH WITH THIS 1 SLIDE.
GROWING UP I WAS AN AVIATION
ENTHUSIAST SO I TOOK PILOT'S
LESSONS WHEN I WAS 12.
YOU WOULD SHOW UP THE AIRPORT,
YOU WOULD GET THE WEATHER
REPORT, YOU WOULDN'T GET THE
WEATHER REPORT FOR MY AIRPORT,
YOU WOULD GET THE WEATHER FOR
WHEN WHERE YOU'RE HEADING, THIS
WAS IN 1992, PREINTERNET, THERE
WAS A COMMUNICATION FRAMEWORK
FOR THE WEATHER, IT TURNS OUT
WEATHER IS A MULTIMODAL
FRAMEWORK, THERE'S THE SHAPE OF
THE LANDSCAPE, THE TEMPERATURE,
THE OCEAN, THE GROUND HUMIDITY,
NUMBER OF WAYS TO MEASURE IT,
BALLOONS WHO GET SENT UP AND
DOWN 2 TIMES A DAY, AIRPLANES
FLYING INTO STORMS AND
COLLECTING DATA, THE NUMBER OF
IMAGES TAKEN AND INTEGRATE THE
WAVE LENGTH THE MULTIMODAL
FRAMEWORK BUT EVERY TIME A
HURRICANE COMES, RIGHT, WE SEE
THIS, WE SEE SEXER SENTIALLY
WHAT'S CALLED A SPAGHETTI PLOT,
CAN YOU SEE IT'S TIGHTLY
TOGETHER AT 2 OR 2 AND GETS
SPREAD APART.
WHY CAN'T WE DO THAT FOR
PATIENTS, RIGHT?
CAN WE CREATE A SPAGHETTI PLOT
FOR OUR PATIENTS?
I THINK WE CAN.
I THINK IT'S BEEN DONE BEFORE,
AND UNLIKE THE WEATHER, I THINK
WE CAN CHANGE IT SO THAT'S THE
VISION AND WE WILL SEE HOW THE
PANELISTS FEEL ABOUT THAT
VISION.
[ APPLAUSE ]
>> THANK YOU SO MUCH FOR THAT
REALLY, REALLY WONDERFUL AND
THOUGHT-PROVOKING TALK.
SO NOW I WILL ASK THE PANELISTS
TO COME UP AND LEAD THE
DECUSHION, IT WILL BE LED BY OUR
CHIEF SCIENTIFIC OFFICER OF THE
ALL OF US PANEL AT THE NIH, WE
HAVE DR. FRAN CHESK O, WITH
NHGRI WHICH IS THE NATIONAL
HUMAN GENOME RESEARCH INSTITUTE
AND DR. JOSH LEVY IS THE
CLENICAL DIRECTOR FOR NIDCD, SO
DR. GINSBERG, PLEASE LEAD US
OFF.
NTHANK YOU.
THANK YOU.
THANK YOU VERY MUCH DR. RESNICK,
OR ADAM FOR AN INSPIRATIONAL
TALK, I WILL JUST SAVE SOMETHING
FOR A LATER DISCUSSION AFTER
THIS IS OVER IS THE CONVERGENCE
OF PHILOSOPHICAL INTENT OF THE
KIDS PLATFORM YOU BUILT AND ALL
OF US IS REMARKABLE AND WILL
PROBABLY HAVE A LOT TO LEARN
FROM EACH OTHER.
BUT LET ME TELL WHAT YOU WE'RE
GOING TO DO TODAY, SO THE THEME
IS PRECISION MEDICINE AND THIS
IS A STRAY JECTORY TEENLIC
PILLAR IN THE NIERK DCD
TRANSLATIONAL RESEARCH TEEJIC
PLAN AS YOU KNOW, SO THE GOAL OF
THIS PART OF--ACTUALLY THE GOAL
OF THIS DAY, I THINK IS TO
PROVIDE NIDCD CAN SOME INSIGHTS
AS TO HOW TO ACTUALLY ENABLE
PRECISION MEDICINE TO BE PART OF
COMMUNICATION DISORDERS
RESEARCH.
SO THAT'S WHAT WE'RE GOING TO
TRY TO TAKE OUT OF THE
DISCUSSION TODAY.
THE AGENDA OF THIS NEXT PART IS
FIRST OF ALL, I WILL JUST SAY A
FEW WORDS ABOUT THE FIELD OF
PRECISION MEDICINE AND THEN
WE'VE DERIVED QUESTIONS, TO
PROVIDE STRUCTURE TO THE
SESSIONS SO THAT WE CAN OPTIMIZE
IN THE SHORT PERIOD OF TIME WE
HAVE THE KINDS OF INFORMATION
CONVEYED BY OUR EXPERTS TO THE
NIDCD GROUP.
I WILL ASK EACH OF MY COLLEAGUES
TO INTRODUCE THEMSELVES BEFORE
THEY ANSWER THE FIRST QUESTION.
SO LET ME START OFF AND TELL
YOU, JUST A COUPLE THINGS FIRST
ABOUT MYSELF, AND ABOUT
PRECISION MEDICINE, AT LEAST A
VANTAGE POINT TO THINK ABOUT.
I AM TRAINED AS A CLINICIAN
SCIENTIST, MOLECULAR,
CARDIOLOGIST AND GENETICS, I
HAVE HAD EXPERIENCE IN ACADEMIA
AND INDUSTRY AND WENT BACK TO
ACADEMIA AND I MET DEBAT DUKE
UNIVERSITY AS COLLEAGUES AND I
CAME TO NIH TO BE THE CHIEF OF
MEDICAL AND SCIENTIFIC OFFICER
FOR ALL OF US AND SO I'VE BEEN
IN THE PRECISION MEDICINE SPACE,
I WOULD SAY ALL OF MY CAREER.
AND IT'S INTERESTING THAT THIS
IS THE YEAR 2023 AND IT'S 20
YEARS SENSE THE SEQUENCING OF
THE HUMAN GENOME WHICH NIH WAS
INTIMATELY INVOLVED IN AND A
STRONG DRIVER OF.
DESPITE THE HIGH HYPERBOLE WE'D
IN THE LAST 20 YEARS, I WOULD
SAY IT'S REMARKABLE.
JUST THINK ABOUT CANCER, WE JUST
HEARD A LOT ABOUT THE POSSIBLES
OF CHILDHOOD CANCER BUT TODAY
THE ENTIRE ARC OF CARE OF CANCER
IS ENABLED BY PRECISION MEDICINE
IN THAT IT WASN'T FOR HUMAN
BENOAM, WE CAN PREDICT THE RESKS
OF SOMETHING DEVELOPING COLON
CANCER, BREAST CANCER AND OTHER
NUMEROUS VARIANTS THAT CAN BE
OBTAINED THROUGH GENOME
SEQUENCE.
WE CAN ALSO DO TESTING FOR EARLY
DETECTION THROUGH A NUMBER OF
ASSAYS OR LIQUID BIOPSIES FOR
DIAGNOSIS AND MOST OF THE
TREATMENTS OF CANCER NOW ARE
TARGETED THERAPIES GOING TO THE
ABILITY TO SEQUENCE THE TUMOR
GENOME, AND THRIVE DRUG TARGETS
AND ULTIMATELY MOLECULES THAT
WILL PREVENT THE GROWTH OF
TUMORS AND EVEN IN THE CARE OF A
PATIENT WITH CANCER, MANY OF THE
ANCILLARY DRUGS THAT ARE USED TO
CONTROL THEIR PAIN, OR NAUSEA
ARE SUBJECT TO PHARMA CO
GENETICS ROLE, SO THAT'S
SOMETHING THAT WAS JUST NOT,
PART OF A PATIENT'S CARE PLAN,
20 YEARS AGO, OR MAYBE EVEN 10
YEARS AGO AND PHARMA CO GENETICS
ITSELF IS A BROAD FIELD, IN THIS
ROOM, 95% OF US HARBOR A GENETIC
VARIANT AND GENES THAT CONTROL
DRUG METABOLISM FOR THE MOST
COMMONLY PRESCRIBED DRUGS IN IN
COUNTRY SO IF WE DON'T KNOW OUR
PHARMA CO GENETIC BACKGROUND
THEN IT'S LIKELY THAT 1 OF US OR
MORE OF US WILL ACTUALLY HAVE AN
UNINTENDED CONSEQUENCE OF A DRUG
OR MAYBE NOT GET OPTIMAL
THERAPY.
IF YOU THINK ABOUT RARE DISEASE,
WE CAN NOW SEE PEOPLE WITH
CYSTIC FIBROSIS, LIVING INTO
THEIR 60S WITH GREAT QUALITY OF
LIFE BECAUSE WE KNOW SOMETHING
ABOUT THE GENETIC VARIATIONS IN
THE CFTR, AND COMPANIES HAVE
RISEN TO THE CHALLENGES OF
TARGETING THOSE IN WAYS
UNBELIEVABLE 20 YEARS AGO AND
SICKLE CELL IS BEING CURED
THROUGH GENE EDITING SO RARE
DISEASES IS UNDERGOING A MAJOR
CONFORMATION, AS IS CHRONIC
DISEASES, WE'RE SEEING POLYGENIC
RISK SCORES DERIVED AND USE
INDEED CLINIC TO ENHANCE 1'S
ABILITY FOR THE ONSET OF DECS
AND THOSE ARE COMPLEMENTED BY
SOCIAL DETERMINANTS OF HEALTH
DATA OR ENVIRONMENTAL DATA GIVE
A FULLY WHOLISTIC VIEW OF RISK,
NOT JUST A GENOMIC VIEW OF RISK
AND I THINK ALL OF THESE COULD
BE PERTINENT TO THE NIDCD AGENDA
AND I WILL SAY 1 MORE THING
BEFORE WE GO INTO THE QUESTIONS
ABOUT ALL OF US, THE ALL OF US
RESEARCH PROGRAM, WE ARE NOW AT
ABOUT 700,000 PLUS INDIVIDUAL
WHO IS HAVE CONSENTED.
WE HAVE 500,000--AROUND 500,000
ELECTRONIC HEALTH RECORDS
ACQUIRED.
WE RELEASE 250,000 WHOLE GENOME
SEQUENCES ON TO OUR RESEARCHER
WORK BENCH AND THE--AND SO WE'VE
AMASSED JUST AS YOU'VE HEARD
FROM ADAM ON A SMALLER SCALE, AN
ARK MAZING DATA STORE THAT CAN
PROVIDE INSIGHTS INTO MANY
COMMON CHRONIC DISEASES AS WELL
AS RARE DISEASES IN WAYS THAT
WERE NEVER ACHIEVABLE BY HAVING
A FULLY ACCESSIBLE DATA PLATFORM
OF THE TYPE THAT WE'VE BEEN
BUILDING AND CONTINUED TO BUILD
OUT.
SO WITH THAT, I WILL LIKE TO
NOW, TURN IT OVER NOW TO OUR
PANELIST ANDS ASK THE FESTER
QUESTION ANDIME THINKING IN VERY
PRAGMATIC TERMS.
SO NIDCD WANTS TO BUILD, MAYBE
ACQUIRE OR PARTNER WITH GROUPS
THAT ARE DEVELOPING DIFFERENT
TYPES OF DATA TO ANSWER
PERTINENT AND SCIENTIFIC
QUESTIONS TO THIS INSTITUTE, ID
LIKE EACH OF YOU TO TELL US YOUR
DREAM FOR WHAT THAT DATA █STORE
SHOULD LOOK LIKE TO ENABLE NIDCD
TO ACHIEVE ITS VISION EMPLOY
WHAT ARE SOME--IT'S NOT--IT
SHOULDN'T IN MY MIND AT LEAST IT
SHOULD NOT BE JUST DATA FOR THE
SAKE OF COLLECTING DATA BUT DATA
IN THE CONTEXT OF WHAT
SCIENTIFIC QUESTIONS WILL THESE
DATA ENABLE US TO ANSWER THAT WE
CAN'T WITHOUT IT.
SO MAYBE I'LL START WITH YOSH
AND WE'LL COME THIS WAY, GIVE
ADAM A CHANCE TO REST FOR A
MOMENT.
>> ABSOLUTELY.
I'M JOSHUA LEV WHY, MY
BACKGROUND TRAINING IS IN
OTOLARYNG OLOGY, AND OTOWHINE O
INFLATION AND IT WAS A FANTASTIC
TALK.
I THINK A LOT OF THE--WHAT WE
ARK SPIRE TO AS A FEEL IN TERMS
OF DATA COLLECTION ARE THINGS
THAT ARE SCALABLE, UNIVERSAL,
BUT GROUNDED IN [INDISCERNIBLE]
WHICH IS SOMETHING I THINK CAN
OFTEN BE LOST PARTICULARLY AND
THIS IS THE BIG POINT THAT I
HOPE WE DIG INTO THE NEED FOR
DATA STABBED ARDS --STANDARDS AD
CLEAR REPORTING AND
UNDERSTANDABILITY OF WHAT I CALL
LOSS OF SMELL AT MY INSTITUTE
ALIGNS WITH THE SAME DIAGNOSIS,
THE SAME METRIC THAT'S MEASURED
AND REPORTED IN A COMMON
DATABASE.
>> YES, GOOD MORNING I'M
VALENTINA, FRANCESCA, LEADING
THE HUMAN GENOME RESEARCH
INSTITUTE, MY BACKGROUND IS
MATHEMATICS AND STATISTICS.
I CAME TO THE NIEKS H, I WAS
ALWAYS ABOUTED IN THE
APPLICATIONS OF MATHEMATICAL AND
STATISTICAL TOOLS TO REAL WORLD
CHALLENGES AND SO, I HAVE--IT
WAS LIKE ENOUGH TO COME TO THE
NIH TO DO A POST DOCTORAL
FELLOWSHIP, THAT'S HOW I STARTED
TO LEARN BIOLOGY, SO, AND I WAS
LUCKY ENOUGH TO GET INTO
GENOMICS AT THE VERY EARLY YEARS
FOR THE INSTITUTE GENOMIC
RESEARCH, GENOMICS, I WAS
INVOLVED IN THE HUMAN GENOME
PROJECT AND BASICALLY BECAME A
COMPUTATIONAL GENOMICS ALL THE
TIME AND THEN I CAME TO THE NIH
AS A PROGRAM OFFICER, ALWAYS
BEEN INVOLVED IN VARIOUS
PROGRAMS ABOUT DOING ANALYSIS OF
GENOMIC DATA, SO I'M VERY
COMMITTED AND INTERESTED IN ALL
THINGS ABOUT HOW TO EXTRACT
INFORMATION FROM THE DATA BEING
DPENERATED, HOW TO ANALYZE IT
AND CREATING THE ENVIRONMENT AND
RESOURCES THAT ADAM JUST TALKED
ABOUT BECAUSE IT'S A BIG
CHALLENGE.
IT'S OBVIOUS THAT BIOMEDICAL
RESEARCH IS TIGHTLY CONNECKED TO
THE PROGRESS OF DATA SCIENCE
TECHNOLOGIES AND SO, HOW TO MAKE
SURE THAT NIH VALUES INSTITUTES
ACROSS THE NIH HAVE THE TOOLS
AND THE TECHNOLOGIES TO DO
EXACTLY THAT.
BIG DATA HAS BEEN GENERATED AND
IT IS A WELL-KNOWN SECRET THAT
EVEN THOUGH WE ARE REALLY GOOD
AT GENERATING DATA AND NOT THAT
GOOD AT ANALYZING IT AND ALSO
NOT THAT GOOD ABOUT MAKING THE
TOOLS RABBLE TO THE CLINICIANS
AND TO BIOMEDICAL RESEARCHERS
THAT ACTUALLY NEED TO USE IT SO
HOW TO TRANSLATE ALL THIS WEALTH
OF INFORMATION INTO SOMETHING
THAT IS MANAGEABLE AND
UNDERSTANDABLE BY THE PEOPLE
THAT NEED TO USE IT NOT ONLY THE
CLINICIANS BUT ALSO PATIENTS
THAT IS REALLY A PASSION OF
MINE.
I AM LUCKY ENOUGH THAT I AM AT
NHGRI THAT IS AT THE FOREFRONT
OF THESE QUESTIONS SO FOR ME
IT'S FROM THE POINT OF VIEW AS
AN ADMINISTRATOR AT THE NIH, I
AM VERY GLAD WE ARE THAT
OPPORTUNITY FOR ME TO BE HERE SO
THAT WE CAN TRY TO ESTABLISH
COLLABORATIONS ON THIS VERY
IMPORTANT TOPICS WHERE WE ARE
DOING PROGRESS IN DIFFERENT WAYS
AND THERE'S A LOT OF KNOWLEDGE
THAT WE CAN SHARE, SO I WILL
STOP HERE.
>> SO I ALWAYS LIKE TO SHARE
MISTAKES WE'VE MADE AS CONTEXT.
AND SO YOU SAW OUR EFFORTS NOW,
SO WEY GANNA WITH GENERATED
RETIRING MOLECULAR DATA SETS, IN
PART BECAUSE WE BELIEVE IN
MOLECULAR DAILY BASIS THEA SETS
AS A CONDUIT FOR DRUGS, SPECIFIC
MUTATION OR CONTEXT.
THE MISTAKE WE MADE, I THINK
TIES TO YOUR CHARGE WHICH IS IF
YOU GO TO ANY ANY MOLECULAR TUR
BOARD AT ANY HOSPITAL, THE FIRST
THINK THIS THEY PULL UP IS THE
IN, RI, THE RADIOLOGY REPORT,
THE HISTOLOGY SLIDE AND THEN,
THEY'LL GET TO THE MOLECULAR
FEATURES.
SO THE PART I THINK WE MISS
EARLY ON IS NOT YOUR RECOGNIZED
THAT WE SHOULD ACTUALLY ANCHOR
INTO WHAT IS THE CLINICAL DATA
SET, RIGHT, THAT CLINICIANS ARE
ACTUALLY CURRENTLY USING IN THE
CONTEXT OF CARE, THAT WAVE FORM
DATA, IMAGING DATA, 1 OF THE
ASSAY THAIS ARE DOING CLINICALLY
AND HOW ARE THEY ASSEMBLING THAT
CAT ON BEHALF OF CARE, LIKELY
NOT THROUGH A DATABASE, RIGHT,
THEY'RE ASSEMBLING IN THEIR
MIND, RIGHT?
EACH 1 INDIVIDUALLY BUT
RECOGNIZING THAT WITHIN EACH
DOMAIN, THERE'S TYPICAL LYE A
SET, RIGHT, OF CLINICAL DAT THAT
COMES FROM TECH SPACE INTERFACE
PLUS SOME MODALITIES THAT ARE
BEING ASSAYS IN MEASUREMENTS
THAT ARE BEING TAKEN INTO
ACCOUNT.
RARELY, HAVE I SEEN AND MADE
THOSE MISTAKES, AS INFRANCIS
COLLINS STRUCKURE FOR PRECISION
MEDICINE BEEN BUILT THINKING
ABOUT THE COMBINATION OF DATA
THAT THE CLINICAL PEOPLE
ACTUALLY USE IN COMBINATION
RIGHT, FOR CARE, AS THE
FOUNDATION UPON WHICH YOU EXTEND
THE ADDITIONAL DATA MODALITIES,
MAKE SENSE, SO, YOU KNOW LIKE I
SAID, THE MINUTE WE STARTED
HAVING MOLECULAR FINDINGS,
PEOPLE SAY LET ME SEE THE MRI,
THEY'RE USED TO THAT, THAT'S HOW
THEY TREAT THEIR PATIENTS.
ONE OF THE DATA MODALITIES THE
CLENITION USES, BUT HOW CAN
THOSE BE EXPANDED THROUGH DATA
SCIENCE INFRASTRUCTURE IS AN
EXTREMELY UNIQUE OPPORTUNITY
THAT'S NOT ALWAYS BEEN DONE, IN
PART BECAUSE IT'S A CHALLENGE.
WAIT FOR DATA, HAS TO BE MANAGED
DIFFERENTLY THAN.COM DATA OR
TEXT-BASED DATA OR MOLECULAR
DATA.
BUT I THINK THAT COMMUNITIES
THAT START FRESH POTENTIALLY
HAVE A OPPORTUNITY TO LEAP FROG,
MAKE DECISIONS DIFFERENTLY THAN
THOSE OF US WHO GRIND OUR WAY
THROUGH IT EARLY ON.
>> THANKS.
I WOULD LIKE TO DRILL DOWN A
LITTLE BIT INTO SOME DETAILS,
BASED ON YOUR 3 RESPONSES AND
I'M GOING TO TAKE THE
PERSPECTIVE OF SOMEBODY WHO'S
HAD REQUESTS FROM THE RESEARCH
COMMUNITY, THE COMMUNICATIONS
RESEARCH COMMUNITY ABOUT ALL OF
US, WHERE IS THE AUDIOGRAM DATA,
WHERE IS THE SPEECH DATA, CAN WE
CAPTURE LINKAGES TO
ENVIRONMENTAL NOISE FEATURES AND
YOU KNOW MAKE--AND THROUGH
GEOCODING BE ABLE TO UNDERSTAND
THE ENVIRONMENT OF THE PERSON
EXPERIENCING SOME TYPE OF
HEALTH-DISEASE TRANSITION.
SO FIRST OF ALL I WOULD LIKE YOU
TO REAC TO THE KINDS OF DATA AT
THAT LEVEL THAT WILL BE CRITICAL
FOR NIDCD TO ACHIEVE PRECISION
MEDICINE IN THIS REGUARD AND
ALSO THINK ABOUT THE STANDARDS
AND MAKING IT INTEROPERABLE,
MAYBE DIFFERENT HEALTH SYSTEMS
HAVE DIFFERENT WAYS TO CAPTURE
AUDIOGRAM DATA, DO THEY ACTUALLY
COMMUNICATE WITH EACH OTHER, DO
RESEARCHERS ACTUALLY KNOW HOW TO
USE AND TRANSFORM THOSE DATA
INTO USEABLE FEATURES THAT THEY
CAN USE IN THE RESEARCH SO THE
TOOLS, PIECE AND THEN THE
COMBINATORIAL ASPECT, TOO, SO I
WOULD LIKE TO GET MORE INTO THE
DETAILS OF YOU KNOW THE DATA
TYPES AND WHAT THE CHALLENGES
MIGHT BE.
NYEAH, I LOVE THE QUESTION, I
WOULD LIKE TO ECHO, GIVE US THE
DATA.
IT'S AN EDUCATION THAT I'VE
RECENTLY HAD TRYING TO TACKLE
THIS QUESTION IN THAT AS A
CLINICIAN, OF COURSE IT'S EASY.
WE KNOW AUTOIMPORTANT AND WE CAN
GET THE DAILY BASIS THEA AND
STANDARDS ARE JUST THE DEFINED
DEFINITION OF WHAT WE VALUE BUT
IN PRACTICE, THE EDUCATION I'VE
HAD IS THAT IT'S INCREDIBLY
DIFFICULT AND I WANT TO
ACKNOWLEDGE KELLIE KENNING WHO'S
HELPED TO LEAD THIS EFFORT
WITHIN THE HEARING SPACE WHERE
WE'VE ACTUALLY PARTNERED WITH
THE NATIONAL ACADEMIES TO BRING
DIFFERENT STAKEHOLDERS TO 1
PLACE, DIFFERENT VALUES SO THAT
WE CAN ACCEPT AND ADOPT THESE
STANDARDS WHICH ARE THEN
INTEROPERABLE BECAUSE RIGHT NOW,
A PDF OF AN AUDIOGRAM AS YOU
MENTIONED, IS VERY LIMITED
EMPLOY SPHRKS I DON'T HAVE AN
SECOND WORLD WAR ARE TO THAT
QUESTION BUT I AM 1 THAT IS
WONDERING WHETHER WE CAN USE
LANGUAGE MODELS TO DEFINE
STANDARDS AND ENCOURAGE THE AX
DOPGZ OF STANDARDS BY
RESEARCHERS.
BECAUSE IT'S DIFFICULT, RIGHT,
IT'S REALLY DIFFICULT TO DEFINE
STANDARDS THAT WORK WITH
DIFFERENT COMMUNITIES ATA A HIGH
LEVEL AND IT'S ALSO VERY
DIFFICULT ONCE THE STANDARD IS
DEFINED TO REALLY IMPLEMENT IT
IN REAL CASE SITUATIONS SO TO
HAVE TOOLS AND LARGE LANGUAGE
MODELS HAVE DIFFERENT FEATURES,
THAT SEEM PROMISING THAT COULD
FACILITATE ONCE THE STANDARD IS
IN PLACE, COULD FACILITATE THE
ADOPTION OF THESE STANDARDS BY
THE RESEARCH COMMUNITY, JUST AN
IDEA.
>> HUNDRED PERCENT AGREE WITH
YOUR COMMENT.
WE EVEN SEE THIS IN FIELDS THAT
HAVE SOME ESTABLISHED LIKE
IMAGING FOR EXAMPLE.
I WAS ALWAYS REFLECT AND
CONTHECT IT TO GENOMICS,
GENOMICS YES THERE ARE DIFFERENT
PLATFORMS BUT AS A FIELD WE SORT
OF HAVE A HANDLE ON HOW TO MAKE
THEM EQUAL OR THAT CAN BE
EQUALIZED.
MANY OTHER MODALITIES WE DON'T
AS A CONTEXT AND SO I'VE OFTEN
WONDERED WHY STANDARDS EMERGE.
STANDARDS EMERGE BECAUSE OF
VALUE PROPOSITION FOR
IMPLEMENTATION OF STANDARDS FOR
THOSE WHO ARE FORCED TO CHANGE
PRACTICE, RIGHT?
DPE NATIONAL LIBRARY OF MEDICINE
INCREASE IN BODYS IT WAS CLEAR,
IF I WANT TO INTERPRET MY
GENOME, I HAVE TO INTERPRET MY
CONTEXT OF OTHER GENOMES, SO
THERE BETTER BE A STANDARD FOR
ME TO COMPARE THEM.
I THINK THAT THAT'S THE KEY,
RIGHT, IS THE GAP THAT I
MENTIONED IS UNTIL THE POINT
WHERE YOU CAN ACTUALLY ADD VALUE
TO THE CLINICIAN LOOKING AT THAT
PDF, IMPLEMENTS STANDARDS IS AN
OVERHEAD, VERY CHALLENGING.
OR ALTERNATIVELY IF THERE'S AN
NIH FUNDED PROJECT THE OTHER
INCENTIVE IS FINANCIAL OR
ACADEMIC SO I THINK THIS IS THE
PROMISE OF AN ANALYTIC FRAMEWORK
THAT'S LINKED TO HEALTHCARE.
THE MINUTE YOU ACTUALLY TART
EXTRACTING FEATURES AND
COMBINING THEM AND MAKING IT
MEANINGFUL TO A CLINICIAN OR
RESEARCHER AT A POINT OF
INTERFACE, WE SEE BEHAVIORS
CHANGE.
EVERYBODY COMPLAINS ABOUT
PUTTING DATA INTO EPIC,
CLINICIANS HATE IT ISSUES RIGHT,
BECAUSE THEY DON'T GET ANYTHING
BACK.
IMAGINE IF YOU CAN TELL A
CLINICIAN IF YOU PUT YOUR DATA
IN HERE THIS WAY, CAN YOU
IMMEDIATELY SEE YOUR PATIENT
CONTEXT OF ALL OTHER PATIENTS.
CLINICIANS WANT TO HELP THEM
PEASHTS ISSUES THE FEEDBACK LOOP
FOR ADOPTION IS MISSING AND
THAT'S 1 HYPOTHESIS THAT I SAY
WE'VE SEEN EMERGE.
>> YEAH, SURE, REACT.
>> I WANT TO COME BACK TO THE
FACT THAT GENOMICS IS QUITE
ADVANCED COMPARED TO OTHER
RESEARCH FIELDS FOR STANDARDS
THAT CAN BE USED IN BIOMEDICAL
RESEARCH SO I JUST WANT TO
MENTION PROBABLY 1 OF THE
STANDARDS, 1 OF THE RESEARCH
ORGANIZATIONS THAT REALLY, I
THINK WE'RE QUITE SUCCESSFUL IN
REALLY BRINGING THE COMMUNITY
TOGETHER IS THE GA FOR GH,
GOINGAL ALLIANCE FOR GENOMICS
AND HEALTH.
WHY WAS THAT SUCCESSFUL?
BECAUSE THEY CREATED A COMMUNITY
OF PARTIES THAT UNDERSTOOD THE
MISSION OF THE VALUE OF THE
STANDARDS AND COMMUNITY-DRIVEN
NOT MANDATES FROM THE NIH REALLY
ESTABLISHED THIS COMMUNITY OF
PEOPLE ACROSS THE WORLD THAT
WANTS TO COME TOGETHER TO
UNDERSTAND IMPORTANCE OF HAVING
STANDARDS FOR SHARING GENOMICS
DATA, ALSO FOR HEALTHCARE
PURPOSES.
SO YOU KNOW TO THE EXTENT THAT
SUCH A COMMUNITY CAN BE
ESTABLISHED FOR YOUR RESEARCH
COMMUNITY, I THINK THAT IS A
GREAT MODEL TO FOLLOW.
>> I WILL ADD 1 OTHER
COMMENT--NNO, NO, PLEASE.
NTHE
--
>> THE OTHER THING YOU SEE IN
THE COMMERCIAL VENDORS PROVIDING
THOSE FRAMEWORK ANDS YOU KNOW
WE'VE SEEN IN WAYS THAT'S BEEN
REMARKABLE AROUND FHIR RESOURCE
IS THAT THE MINUTE THE FEDERAL
FRAMEWORK SAID THIS IS A
STANDARD, COMMERCIAL ENTITIES
BEGAN ADOPTING AND DEVELOPING
AGAINST IT MUCH, MUCH FASTER
THAN RESEARCH OR EACH HOSPITAL
SYSTEMS, LIKE AMAZON AND GOOGLE
AND MICROSOFT, SO THAT'S THE
OTHER ANGLE IS THAT I THINK AS
VALENTINA, MENTIONED, CAN YOU
PAIR ESSENTIALLY A BODY THAT HAS
SOME AUTHORITY AROUND RESOURCES
WITH COMMUNITY FEEDBACK LOOP OF
EMPOWERMENT.
THOSE CAN ACTUALLY DRIVE
PRACTICE.
>> MY COMMENT WAS RIGHT ALIGNED
WITH THAT AND I WAS NOT
ANTICIPATING TO HEAR ABOUT FHIR
TODAY BUT I'M REALLY FLAD THAT
YOU BROUGHT IT UP.
MY UNDERSTANDING OF FHIR IS THAT
IT'S A DATA STANDARD FOR THE
SHARING TRANSMISSION OF IN MY
EXPERIENCE AT LEAST, CLINICAL
DATA IF YOU HAVE AN AUDIOGRAM TO
SUBMIT THAT TO YOUR EPIC
DATABASE IT HAS TO FOLLOW A
FHRIERKS R PROTOCOL AND ADAM
PLEASE CORRECT, THE FRAME SHIFT
FOR ME IS VIEWING THAT STANDARD
IN THE RESEARCH FIELD, EXTENDING
IT BEYOND CLINICAL CARE, I THINK
THISIA A LOT OF OPPORTUNITIES.
NYEAH, THIS IS A KEY MOMENT IN
TIME, THEY ARE DEVELOPED FOR THE
CLINICAL FRAMEWORK, THE RESEARCH
COMMITTEE HAS HAD A VERY
EMPOWERED CONTEXT FOR CLENICAL
DATA MODELING THROUGH ODESSY OR
OMOP BASED REPRESENTATION OF
DATA, THE KEY PART HOW TO MARRY
THOSE 2 OPPORTUNITIES ISSUES THE
RESOURCES THAT ARE DEVELOPED FOR
RESEARCH, USE FOR CLINICAL DATA
HOW DO WE HARNESS THIS MOMENT IN
TIME WHERE THERE'S A MANDATE IN
TOOLING AND A KEY PART OF IT ARE
TO FRAME PEOPLE WHO ARE NOT
FAMILIAR WITH IT, THE MAIN
ADVANTAGE IS THAT THERE'S A
STANDARD SORT OF USB PORT THAT A
SYSTEM CAN CONNECT TO AND GET
THAT INFORMATION.
THERE'S AN ESTABLISHED
COMMUNICATION PORT ESSENTIALLY
INTO THE HEALTH DATA, DATA
ITSELF MAY STILL REQUIRE
ADDITIONAL MODELING OR OTHER
THINGS BUT AT LEAST YOU KNOW HOW
TO ASK FOR IT AND YOU KNOW WHAT
YOU'RE GOING TO GET, RIGHT AS A
FRAMEWORK AND THAT SEEMS SIMPLE,
BUT HALF THE TIME WITH WE GET
FILES FROM SOMEBODY, WE DON'T
KNOW WHAT THEY ARE, WE DON'T
KNOW WHAT'S IN THEM, RIGHT?
DID IT INCLUDE WHAT I ASKED FOR
IN THAT'S A REAL BIG BARRIER
INTO THAT CONTEXT.
>> I JUST CAN'T RESIST SAYING
THE GREAT THING ABOUT STANDARD
SYSTEM THAT THERE ARE SO MANY OF
THEM.
[LAUGHTER]
BUT THIS DISCUSSION, I THINK
CRYSTALLIZES AT LEAST
CONCEPTUALLY THAT SOMETHING THAT
NIDCD MIGHT DO ON ITS OWN OR
MAYBE IN PARTNERSHIP WITH OTHER
ORGANIZATIONS, I'M THINKING LIKE
THE NATIONAL ACADEMIES IS REALLY
TO HAVE IT CONVENING AROUND THIS
DATA STANDARDS TO FOSTER
INTEROPERATING GLOBALLY
RAIBILITY, FLUIDITY OF DATA TO
CLINICAL DATA I THINK THAT POINT
IS SPOT ON, JUST SOMETHING TO
CONSIDER AS WE MOVE ON HERE, SO
DID YOU WANT TO MAKE A COMMENT?
>> JUST ADD A LAYER HERE TO THE
OPPORTUNITY.
YOU KNOW ASSESS AI READINESS OF
DATA, RIGHT, HOW CAN THE DATA
YOU CARE ABOUT BE POSITIONED YOU
KNOW FOR HARNESSING THESE NEW
TECHNOLOGIES?
YOU DON'T WANT TO MISS THAT
MOMENT IN TIME ESSENTIALLY.
>> I WANTED TO SHIFT GEARS A BIT
AND THIS IS ALSO, YOU TOUCHED SO
MANY DIFFERENT TOPICS THAT ARE
RELEVANT TO THIS BUT 1 OF THE
TOPICS THAT WE ALL NEED TO THINK
ABOUT IS THE BIAS AND DATA,
BECAUSE ARE WE SEEING THE
DIVERSITY OF PATIENTS,
PARTICIPANTS CONTRIBUTING DATA
THAT WE 92 ED TO HAVE WHATEVER
WE'RE TALKING ABOUT HERE
APPLICABLE TO EVERYONE.
SO I WONDER IF ANY OF YOU WOULD
LIKE TO SPEAK TO SOME OF THE
CHALLENGES AND PARTICULARLY
IN--NOT JUST RACE ETHNICITY
CHALLENGES WHICH I'M SURE ARE
PARAMOUNT, BUT ALSO
DISABILITIES, AND MAKING SURE
THAT THOSE INDIVIDUALS ARE
REPRESENTED IN THE TYPES OF DATA
WE'RE TALKING ABOUT AND ANY
IDEAS ABOUT YOU HOW TO FOSTER
GREATER ENGAGEMENT WITH THE
COMMUNITIES THAT ARE LARGELY
ABSENT.
ANY THOUGHTS.
IT'S CRITICALLY IMPORTANT.
I THINK WE ALL RECOGNIZE THAT
DIVERSITY IN OUR CLINICAL TRIALS
BOTH FROM THE NIH AS WELL AS THE
EXTRAMURAL COMMUNITIES IS SORELY
LACKING CAN WHAT I FIND EVEN
MORE CONCERNING IS THAT THERE'S
NO CLEAR GUIDANCE ON HOW TO
IMPROVE WHAT IS DIVERSITY, WHAT
IS A REPRESENTATIVE POPULATION,
WHEN IS A RARE DISEASE
IDENTIFIABLE IN ITS OWN RIGHT?
THESE ARE ALL OPEN QUESTIONS
THAT ARE OFTEN TIMES DECIDED ON
A CASE BY CASE BASIS WHICH MAKE
ITS MUCH HARDER TO IMPROVE.
I WILL TAKE THE OPPORTUNITY TO
HIGHLIGHT A WORKSHOP THAT WILL
BE HOSTING AT THE CLINICAL
CENTER AND I WOULD LOVE EVERYONE
HERE ASK ONLINE TO JOIN SPEAKING
DIRECTLY TO THIS TOPIC ON
DIVERSITY CAN CLINICAL TRIALS
BECAUSE IT'S CRITICALLY
IMPORTANT BUT WE HAVE A LONG WAY
TO GO.
>> YEAH, I JUST WANT TO COMMENT
ON THE MEANING OF THE WORD
DIVERSITY, AND HOW DO WE DEFEIGN
AND HOW DO WE STRATIFY THE
POPULATION TO MAKE SURE THAT THE
CLINICAL TRIAL THAT WE'RE DOING
IS REALLY REFLECTIVE OF THE
PHENOTYPE THAT WE WANT TO STUDY,
RIGHT?
AND IT'S AN ENCOURAGEMENT TO GO
BEYOND THE SOCIAL CONSTRUCTS
THAT WE TYPICALLY TALK ABOUT,
THE MORE TRYING TO THINK ABOUT
OTHER WAYS THAT ARE A PHENOTYPIC
STRATIFICATION OF THE PATIENT
POPULATION, THAT MAY BE BASED ON
GENO TYPE AND OTHER
CHARACTERISTICS.
I THINK THAT FOR SIMPLICITY
SOMETIMES, WE JUST FOLLOW
UNCERTAIN CATEGORIES AND I
REALLY THINK WE SHOULD BE
ENCOURAGED BY THE BIOMEDICAL
RESEARCH COMMUNITY TO GO BEYOND
THOSE GROUPINGS AND TO REALLY GO
DEEPER WITH A PHENOTYPE OF A
POPULATION THATNYS TO BE
RECRUITED AND AND THROUGH THE
CLINICAL TRIAL EFFORT, THAT'S
ALL I WANTED TO SAY.
>> WE ALSO THINK ABOUT DIVERSITY
IN 2 FRAMEWORKS.
ONE WHICH IS NATURAL FOR US, I
THINK, THOSE OF US WHO ARE
STEEPED IN BIOLOGY AND MOLECULAR
CONTEXT WHICH HAS VALENTINA
MENTIONED HOW DO WE MAKE SURE
WE'RE ACTUALLY MEASURING THE
SPACE REQUIRED TO MEASURE TO
MAKE AN INTERPRETATION, LET
ALONE THE MORAL MANDATE OF
ADDRESSING THE NEED OF THOSE
REPRESENTED, BUT THE OTHER PART
WHICH I THINK WAS TRANSFORMATIVE
FOR ME, WAS WHEN I STARTED
READING PAPERS, THAT TREATED
OTHER VARIABLES OF THE
UNIVERSITY, FOR EXAMPLE, YOU
KNOW ACCESS TO HEALTHCARE, OR
SOCIOECONOMIC AT STATUS AND THE
OUTCOMES THESE KIDS MIGHT HAVE
IF YOU HAVE A BRAIN TUMOR, ARE
THE DIFFERENCES LIKE IF YOU
PLOTTED IT ON A CAP LANMIER
CURVE FOR EXAMPLE WERE MUCH
LARGER DIFFERENCES THAN ANY GENE
WE EVER DISCOVERED, RIGHT, THAT
CAUSE DIFFERENCES IN THE TUMOR.
SO THE UNDERSTANDING THAT YOU
CAN HAVE OUTCOME MEASURES WHICH
WHAT WE CARE ABOUT IMPACTED BY
VARIABLES THAT ACTUALLY ARE
POTENTIALLY ADDRESSABLE IN WAYS
THAT ARE EASIER FROM A--I KNOW
HOW TO FIX IT TYPE OF FRAMEWORK
THAN A MODEL CITIZEN LEAKULAR 1
WHERE WE HAVE TO DEVELOP A NEW
DRUG AND RECOGNIZING THAT THAT
SIGNAL TO NOISE EXISTS IN THAT
ANALYSIS, I THINK IS INKRE
TINSIBLELY IMPORTANT ESPECIALLY
AS YOUR PHENOTYPES BECOME MORE
COMPLEXLY INFORMED BY MULTIPLE
GENE AND ENVIRONMENTAL CONTEXT,
RIGHT, AS A SETTING AND SO, I
WILL COME BACK TO WHAT I FOUND
MYSELF HAVING TO REMIND MYSELF
AND PEOPLE I WORK WITH, THAT WE
CAN'T FIX SOMETHING WE DON'T
MEASURE, RIGHT IN SO YOU HAVE TO
MEASURE IT AND INCORPORATE IT
INTO THE SETTING, THAT'S THE
KEY, I THINK BUT THINKING ABOUT
DIVERSITY IN THE 2 LENSES, THE
BIOLOGIC REPRESENTATIONAL 1 BUT
ADVERSITY OF VARIABLES CAN
ACTUALLY IMPACT THE END POINTS
AND ARE ALREADY KNOWN THAT I
IGNORED BECAUSE OF WHAT YOU'RE
MEASURING, YOU KNOW IN THE
CONTEXT.
>> LET ME FOLLOW UP ON THAT,
FIRST, IN THE--IF YOU NO MATTER
HOW WE DEFINE DIVERSITY, I AGREE
IT'S A CRITICAL DEFINITION.
WE HAVE THE OPPORTUNITY AS
YOU'RE POINTING OUT ADAM THAT WE
CAN MEASURE MANY DIMENSIONS OF
DATA OR POPULATION, YET THE
RESEARCH COMMUNITY IS PRETTY
MONODIMENSIONAL IN THE WAY THAT
THEY THINK ABOUT RESEARCH,
MEANING THAT MOST LABS MAY BE
USE 1 OR 2 DATA TYPES OF
CLINICAL GENETIC OR SOMETHING
LIKE THAT, BUT IT'S A RARE
LABORATORY INVESTIGATOR GROUP
THAT USES MORE DIMENSIONALITYS
OF THE DAY, SO THE QUESTION I'M
REALLY GETTING AT IS, IN ORDER
TO GET THE FULL PICTURE OF THE
INDIVIDUAL, THE TRAJECTORY,
PREDICTIVE MODELS, OUTCOMES AS
PRECISION MEDICINE WOULD LIKE US
TO DO, HOW DO WE PREPARE THE
WORKFORCE TO ACTUALLY BE ABLE TO
HANDLE THE DIFFERENT DATA
STREAMS.
ONE ANSWER YOU SAY WELL, USE
CHATGPT, I'M PEEKING DPLIBLY,
BUT I DO THINK THAT THE
WORKFORCE OF RESEARCHER
WORKFORCE TODAY MAY NOT BE
PREPARED TO USE THE DAILY BASIS
THEA TYPES WE'RE TALK HAD
THE--DATA TYPES WE'RE TALKING
ABOUT HERE.
>> I'M ASKING, IS THERE A WAY WE
CAN--
>> HOW ARE WE TRYING TO DO THIS
AT LEAST.
YOU KNOW SO WE LEANED IN HEAVILY
INTO MULTIMOWAL FRAMEWORKS WITH
THE ARGUE AM WHICH I THINK IS
UNDERNEATH WHAT YOU'RE SAYING
WHICH IS RECOGNIZING THAT EACH
DATA LAYER ACTUALLY ADDS
INFORMATION TO THE ANALYSIS, I
THINK INVESTIGATORS DON'T KNOW
THAT FULLY AND DON'T HAVE THE
TOOLS TO ASSESS THAT FULLY.
THE MINUTE I SHOW A CLINICIAN,
THAT IF I CLUSTER THESE PATIENTS
USING 5 MODALITIES, AND 2,
SUDDENLY YOU HAVE 5 GROUPS OF
PATIENTS, THEY INTINCTUALLY
START ASKING QUESTIONS, WHAT'S
DIFFERENCE BETWEEN THIS GROUP
AND THAT GROUP.
HAVE I SEEN SOMETHING THAT I'VE
MISSED.
SO AGAIN, I THINK THERE'S A
FEEDBACK LOOP THAT YOU NEED TO
EMPOWER AND IT'S THE COMBINATION
OF TOOLING IN THAT SETTING, I'VE
SEEN MULTIMODAL DATA BEING
INTERSECT INDEED WAYS THAT
WASN'T MEANINGFUL SO THAT
ADOPTION FRAMEWORK AND
INCENTIVES ARE NOT THERE BUT THE
MINUTE YOU INCENTIVIZE
INTERPRETATION ASK MULTIMODAL
ANALYTICS AND UNVEILS SOMETHING
THAT'S DIFFERENT OR UNEXPECTED
OR EVEN CONFIRMS EVEN, YOU SEE
INTENSE INTEREST, YOU KNOW IN
THAT CONTEXT TO MOVE FORWARD, SO
PARTLY, I THINK IT'S TOOLING,
THE OTHER I THINK IS STILL IF
YOU MENTIONED AI 5 YEARS AGO,
PEOPLE WOULD ROLL THEIR EYES, 3
YEARS AGO, PEOPLE WOULD ROLL
THEIR EYES, I THINK NOW BECAUSE
IT'S A BIT MORE SPRENSIAL
BECAUSE PEOPLE HAVE GONE ON,
IT'S WEIRD AND DIFFERENT, THAT'S
THE OTHER OPPORTUNITY THAT'S
BEEN MISSING IS THAT, YOU FIGURE
THE PROMISE OF BIG DATA IN AI
AND ANALYTICS HAS NOT REALLY
COME TO HEALTHCARE YET.
AND IN MANY WAYS HEALTHCARE HAS
NOT RECOGNIZED, MOST HOSPITAL
SYSTEMS AND I SAY THIS FAIRLY
OFTEN, HAVE NOT RECOGNIZE THAD
THEY'RE BIG DATA COMPANIES AND
HOW TO THINK ABOUT THEIR
INFRASTRUCTURE OF A BIG DATA
COMPANY FROM AN ENGINEERING
PERSPECTIVE AND TOOLING
PERSPECTIVE AS CONTEXT.
DEFINITELY TOO HARD FOR A SINGLE
HUMAN TO THINK ABOUT.
>> I THINK JOSH WOULD DISAFRO
WITH YOU.
HE DOES THAT IN THE CLENNIC ALL
THE TIME.
SO I MEAN, I THINK THAT'S WHAT
YOU WERE SAYING EARLIER IS THAT
AS HUMANS WE GATHER INFORMATION
INTUITIVELY TO IN DEGREE AND
CREATE OUR OWN MODELS BUT
RESEARCHERS DON'T DO IT THAT
WAY.
>> MY FAVORITE NEUROSURGEON ASK
LOOK AT AN MRI AND SAY, I KNOW
I'VE SEEN THIS BEFORE.
>> YEAH.
DID YOU WANT TO ADDRESS IT?
>> YEAH, SO--THE PROBLEM OF
MULTIPLE MODALITY DATA AND HOW
TO EXTRACT INFORMATION FROM IT,
IT GOES BACK TO THE CLASSICAL
DATA INTEGRATION ISSUE WHICH YOU
KNOW DATA SCIENTISTS HAVE BEEN
DEALING WITH SINCE BIOMEDICAL
RESEARCH BECAME A BIG DATA
RESEARCH FIELD.
SO HOW TO DO THAT, CAN YOU DO IT
DIFFERENT LAYERS, RIGHT IN YOU
CAN JUST PUT THE DATA WITH
DIFFERENT DATA TYPES INTO THE
RESOURCE AND SAY IT'S INTEGRATED
WHICH WE KNOW IT'S NOT BUT AT
LEAST IT IS IN 1 PLACE.
OR CAN YOU BE LITTLE BIT MORE
SOPHISTICATED WHICH IS USE
STATISTICAL METHODS, AI, METHODS
AND SO ON, AND TRY TO EXTRACT
INFORMATION OUT OF IT.
SO IT DPZ BACK TO WORKFORCE
DEVELOPMENT, HOW DO YOU GET TO
THIS, YOU KNOW BIG ENOUGH
WORKFORCE OF COMPUTATIONAL
MODELERS, PEOPLE THAT KNOW HOW
TO TRAIN AND USE THIS AI MODELS
TO EXTRACT THE INFORMATION YOU
NEED.
SO IT GOES BACK TO HOW DO YOU
HAVE ENOUGH PEOPLE, THAT ARE
GOING TO STEM SCIENCES AND HOW
DO YOU CREATE ENOUGH PEOPLE EVEN
STARTING FROM K12 SCHOOL ENGEAJ
IN THIS TYPE OF ACTIVITY AND NOT
BE SCARED TO IT SO UNFORTUNATELY
THAT'S HOW--I THINK THE PROBLEM
STARTS MANY YEARS BEFORE IT,
PEOPLE GO TO MEDICAL SCHOOL.
>> ONE COMMENT ON THE SHARED
EXPERIENCE, WE DID KNOWA
EXPERIMENT OF HANDLING DATA TO
AMERICAN AIRLINES AND ENGINEERS,
THEY DIDN'T KNOW--THEY THEY HAD
FORGOTTEN ALL THEIR NIEJT GRADE
BIOLOGY, ALL WE DID WAS HAND
THEM SHEETS AND ROWS OF
MOLECULAR DATA.
THEY BROUGHT DIFFERENT
TECHNIQUES THAT THEY USE TO
PREDICT WHEN AN AIRPLANE'S GOING
TO BE A CERTAIN PLACE OR IT'S
GOING TO BE THERE, COMPLETELY
DNCH THAN WE WOULD HAVE EVER
THOUGHT OF BUT THEY COULD CREATE
THE EXACT SAME CLASSIFIED TUMOR
TYPES THAT WE HAD DONE.
SO I THINK THAT'S THE OTHER
OPPORTUNITY IS CROSS DISCIPLINE
ANALYTICS.
I MENTIONED WEATHER, RIGHT?
FINANCE IS AMAZING 3 GOOD AT
THIS, IF YOU WANT TO SEE
REALTIME ANALYTICS, FINANCE IS
WHERE YOU SEE REALTIME ANALYTICS
AT SCALE.
SO THAT'S THE OTHER OPPORTUNITY
TO THINK ABOUT IS, MULTIMODAL
ANALYTICS THAT HARNESS SHARED
APPROACHES.
>> I COMPLETELY AGROW AND I
WOULD JUST ADD THAT WE NEED TO
LOOK NOT ONLY OUTSIDE OF OUR OWN
FIELDS OUTSIDE OF HEALTHCARE BUT
WITHIN, AND CLINICALLY WE ARE
WAY TOO SILOED IN OUR OWN
SUBSPECIALTIES AND I THINK FROM
A DATA STANDPOINT THE SAME HOLDS
TRUE.
THE REPRESENTATION ON THIS PANEL
SPEAKS TO THE IMPORTANCE OF
BREAKING DOWN THESE BARRIERS.
WE DON'T NEED TO RECREATE DEN
DIFFERENT DATA SOLUTIONS, WE CAN
INTEGRATE AND LEARN FROM EACH
OTHER.
>> DPRAIT.
THAT WAS A FREIGHT RESPONSE TO
THAT LAST QUESTION EMPLOY I KNOW
WE'RE AT TIME, I WANT TO TAKE
60-SECONDS TO REFLECT ON SOME
HEAD LINES BECAUSE THAT'S ALL WE
HAVE TIME FOR, THINGS THAT I
HEARD BOTH THROUGH ADAM'S
PRESENTATION AND THE PANEL
DISCUSSION.
THE FIRST IS THAT WE SHOULD NOT
UNDERESTIMATE THE POWER OF
SHARING DATA AND LEVELS INCREASE
RAMMING THE INVESTMENTS THAT ANY
1 GROUP MAKES TO SHARE THEIR
DATA WITH THE OTHER AND THE
AMPLIFICATION THAT OCCURS IN
SCIENCE AND IN ORDER TO MAKE
THAT HAPPEN, WE HAVE TO BE
TRANSPARENT WITH OUR PARTICIPANT
AND PATIENT COMMUNITY SO THEY
UNDERSTAND HOW THEIR DATA IS
BEING USED AND CLEARLY THE
BENEFITS THAT BEING COME FROM
IT.
WE NEED TO AS A COMMUNITY I
THINK MAXIMIZE DIVERSITY NOT
ONLY OF OUR PARTICIPANT AND
PATIENT POPULATIONS THAT ARE
CONTRIBUTING THEIR DATA TO
RESEARCH, BUT THE DIVERSITY OF
THE LENSES OF EXPERT ANDS
RESEARCHERS THAT ARE LOOKING AT
THE DATA SO THAT WE CAN MACK
MYSELF THE QUESTIONS THAT
ARE--MAXIMIZE THE QUESTIONS THAT
ARE ASKED AND INFORMATION
ACHIEVED.
LONGITUDINALLITY IS IMPORTANT
AND TRAJECTORIES ARE GOING TO BE
PROYECTED SO THERE'S AN OBVIOUS
NEED FOR STANDARDS DISCUSSED ON
DIFFERENT LEVELSAs WELL AS
TOOLS TO MAKE THE DATA
APPROACHABLE BY EACH THE MOST
NOVICE OF RESEARCHERS,
COMMUNITY, PERHAPS GOING BACK TO
STEM.
EARLY, JUST EARLIER IN THE
EDUCATIONAL PROCESS, THE BETTER
OFF, THE FUTURE WORKFORCE WILL
BE AND THEN, NOT LASTLY BUT
CERTAINLY, 1 OF THE THEMES THAT
CAME UP JUST IN THE LAST FEW
MINUTES OF THIS DISCUSSION IS
THAT IT'S A TEAM SPORT, AND WHAT
THAT REALLY MEAN SYSTEM THAT
CROSS DISCIPLINARY TEAMS ARE
REALLY GOING TO ACCELERATE THE
RESEARCH AND 27 INSTITUTES AND
CENTERS HAVE TO FIGURE OUT HOW
TO BREAK DOWN THE SILOS TO MAKE
YOU KNOW PRECISION MEDICINE A
REALITY NOT ONLY FOR NIDCD BUT
FOR THE ENTIRETY OF NE H, SO
WITH THAT I WILL TURN IT BACK TO
DEB.
THANK YOU.
>> THANK YOU.
I WANT TO EXPRESS MY DEEP
APPRECIATION TO ADAM AND ALL OF
OUR PANELISTS FOR A RICH
DISCUSSION EMPLOY I COULDN'T
HAVE HOPED FOR MORE.
THAT WAS PERFECT.
I THINK WHEN I THINK OF A GRAND
VISION, WHAT I THINK OF AS
SOMEBODY WHO IS A CLINICIAN IS
REALLY THE INTEGRATION OF
RESEARCH INTO CLINICAL CARRY, I
THINK THAT'S THE END GAME THAT
WE'RE THINKING ABOUT IS THAT
RESEARCH IS A 2 WAY STREET SO
THE CLINICIAN PROVIDES
INFORMATION BUT THE CLINICIAN
ALSO GETS INFORMATION BACK ABOUT
HOW TO GUIDE THEIR CARE OF
PATIENTS.
SO, THAT IS THE GOAL THAT I KNOW
WE'RE ALL AIMING FOR.
SO I WILL WRAP UP THEN AND SAY
THAT IF YOU WOULD LIKE TO GIVE
FEEDBACK ON TODAY'S EVENT, THERE
SHOULD BE A SLIDE THAT WILL
APPEAR SHORTLY THAT HAS A QR
CODE THAT YOU CAN ACCESS TO
PROVIDE FEEDBACK AND WE WOULD
VERY MUCH APPRECIATE THAT.
FOR THOSE OF YOU WHO ARE HERE IN
PERSON, YOU'RE INVITED TO JOIN
US FOR COFFEE, DR. RESNICK WILL
STAY WITH US FOR A BIT AND CAN
CONTINUE THE DISCUSSION.
THE NEXT NIDCD'S DIRECTOR'S
SEMINAR SERIES WILL BE HELD NEXT
FALL.
PLEASE CHECK THE NIDCD EVENTS
PAGE OF OUR WEBSITE IN THE
COMING MONTHS FOR MORE
INFORMATION.
AND THIS CONCLUDES OUR
PRESENTATION.
THANK YOU ALL FOR COME XG THANK
YOU ADAM AND OUR PANELISTS.
[ APPLAUSE ]