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 ALL RIGHT, AND GOOD MORNING

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EVERYONE EMPLOY I'M DEBORAH,

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DIRECTOR OF DIRECTOR OF THE

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NATIONAL EN--STRATEGIESITUTE OF

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DEAF AND OTHER DISORDERS.

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THANK YOU TO ALL OF YOU IN THE

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ROOM AND WELCOME TO ALL WHO ARE

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JOINING US BY VIDEOCAST.

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FOR THOSE OF YOU WHO ARE VIEWING

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ON NIH VIEDMAN KRE TINS CAST,

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PLOAZ BE ADVISED THAT TO TURN ON

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THE CAPTIONS, IF YOU WANT TO DO

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SO, FOR TODAY'S PRESENTATION YOU

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CAN CLICK THE CC BUTTON AT THE

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BOTTOM OF THE SCREEN.

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SO I'M PLEASED TO WELCOME

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EVERYONE JOINING US TODAY FOR

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THE NIDCD'S DIRECTOR'S SEMINAR

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SERIES, ADVANCING THE SCIENCE OF

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COMMUNICATION TO IMPROVE LIVES

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EMPLOY THIS ANNUAL SEMINAR

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SERIES IS DESIGNED TO ALIGN WITH

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THE THEMES AND PRIORITIES OF THE

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NIH 2023--2027 STRATEGIC PLAN,

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THE GOAL IS TO BALANCE, VOICE,

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SPEECH, TASTE, SMELL AND

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LANGUAGE.

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TODAY I AM DELIGHTED TO ANNOUNCE

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DR. ADAM RESNICK, HE WITH THE

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CATADRIVEN DORPHY IN BIOMEDICINE

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AT THE CHILDREN'S HOSPITAL AT

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PHILADELPHIA.

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DR. RESNICK IS RESPONSIBLE FOR

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LEADING A MULTIDISCIPLINARY TEAM

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TO BUILD AND SUPPORT A SCALABLE

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PATIENT-FOCUSED HEALTHCARE AND

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EDUCATIONAL ECOSYSTEM TO

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ACCELERATE DISCOVERY AND

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CLINICAL TRANSLATION FOR ALL

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CHILDREN.

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HE ALSO LEADS THE ONGOING

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DEVELOPMENT OF PLATFORMS

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SUPPORTING LARGE SCALE DATA

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SHARING AND COLLABORATIVE

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DISCOVERY IN THE AREAS OF

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PEDIATRIC CANCERS, STRUCTURAL

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BIRTH DEFECTS AND DOWNS

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SYNDROME.

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AND THESE INCLUDE THE GABRIELA

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MILLER, KIDS FIRST, DATA

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RESEARCH CENTER, WHICH IS

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SUPPORTED BY THE NIH COMMON

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FUND, AND THE ENCLUED PROJECTS

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DATA HUB AND INCLUDE STANDS FOR

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INVESTIGATION OF CO-OCCURRING

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CONDITIONS ACROSS THE LIFE SPAN

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TO UNDERSTAND DOWNS SYNDROME AND

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THIS IS A PROGRAM THAT NIDCD

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DOES PARTICIPATE IN.

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DR. RESNICK'S PRESENTATION WILL

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ADDRESS FUNDAMENTAL ISSUES

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RELATED TO HOW DATA ARE USED AND

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ACCESSED IN BOTH BASIC AND

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CLINICAL RESEARCH AND IN

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DECISION SUPPORT AND PRECISION

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BASED CARE.

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HE WILL REVIEW LESSONS LEARNED

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THROUGH NIH WIDE INITIATIVES,

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AND HE WILL DISCUSS UPCOMING

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ADVANCEMENTS IN MACHINE LEARNING

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AND ART FECIAL INTELLIGENCE TO

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SUPPORT AND IMPROVE PERSONALIZED

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CARE EMPLOY AFTER DR. RESNICK'S

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REMARKS, I HAVE INVITED 3

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NETWORK IH SCIENTISTS TO JOIN US

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FOR A PANEL DISCUSSION AND A

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FURTHER DISCUSSION OF THESE

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THEMES AND I WILL INTRODUCE OUR

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PANELISTS LATER.

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SO NOW I WILL TURN IT OVER TO

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DR. RESNICK FOR HIS REMARKS AND

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THANK YOU SO MUCH FOR BEING WITH

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US TODAY.

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[ APPLAUSE ]

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>> YOU KNOW WHEN I GOT
INVITED I

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WASENTIOUS SPECIALLY EXCITED

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AFTER READING THE STRATEGIC PLAN

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THAT WAS BRIEFLY DEVELOPED.

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AT THE SAME TIME I WAS MORE

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NERVOUS THAN USUAL TO COME IN

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PART BECAUSE WITH ANY

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ORGANIZATION, TAKES ANY

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DIRECTIVE ON INITTIAIVE ITS,

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IT'S VERY VULNERABLE AND

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OPPORTUNISTIC TIME SO I WANTED

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TO PROVIDE AS MUCH ENCOURAGEMENT

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AND SUPPORT FOR THOSE EFFORTS,

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YOU KNOW THROUGH THIS

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PRESENTATION AND SO, AS I

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MENTIONED, MY GOAL IS TO REALLY

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SHARE EXPERIENCES AND LESSONS

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LEARNED DEFINITELY NOT CONVEY

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THAT ALL PROBLEMS ARE SOLVED AND

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THAT SOMEHOW I HAVE THOSE

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SOLUTIONS FOR YOU.

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BUT YOU KNOW WE'VE BEEN DOING

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THIS FOR SOMETIME IN WAYS THAT I

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THINK I CAN PROVIDE SOME

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EXPERIENCES THROUGH BOTH OUR

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PEDIATRIC CONSORTIA BASED

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INITIATIVES THAT FOCUS DATA

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SHARING ASK COORDINATION AS WELL

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AS NIH-BASED EFFORTS IN WAYS

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THAT ARE NOW POSITIONED WITH A

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VERY UNIQUE CONTEXT AS NEW

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TECHNOLOGIES ARE EAMERICANNING

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AND HEALTHCARE SYSTEMS ARE

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ORIENTING TOWARDS DATA ORIENTED

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NETWORKS FOR PRECISION CARE.

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WHEN I CAME ACROSS THIS BOX IN

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THE STRATEGIC PLAN, I HAD A

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MOMENT WHERE MY HEART JUMPED FOR

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A SECOND AND THE REASON IT

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JUMPED IS BECAUSE THERE'S A

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METAFRAMEWORK FOR THE VISION FOR

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NIDCD AND I'LL SPEND AND INDULGE

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IN 5 MINUTES FOR THAT

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METAFRAMEWORK TO ALIGN HOPEFULLY

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A RE14 YOU WILL SEE THROUGH THE

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REST OF THE TALK.

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SO ADVANCING THE SCIENCE OF

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EDUCATION TO IMPROVE LIVES.

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--COMMUNICATION TO IMPROVE

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LIVES.

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WHENEVER I WORK ON

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COMMUNICATIONS, THE FIRST THING

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THAT COMES TO MY MIND AND THIS

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TRANSFORMATIVE PAPER FROM 1948

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FROM CLAUDE CHANEN, ESSENTIALLY

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INVENTED THE MODERN FRAMEWORK

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FOR INFORMATION THEORY AND

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ESSENTIALLY INVENTED WHAT WAS IS

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CALLED A BIT IN THE CONTEXT AND

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THE WAY THAT HE FRAMED

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INFORMATION THEORY IS IN THE

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CONTEXT OF COMMUNICATION, RIGHT?

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SO THE PAPER AND ANY SORT OF

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DATA [INDISCERNIBLE] WILL ALERT

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AND KNOW THIS TITLE BY HEART AND

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THAT MABLGHTMATICAL THEORY OF

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COMMUNICATION AND AND

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CONTEXTUALIZED 1 OF THE

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COMMUNICATION FROM BASIC HUMAN

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NEEDS FROM SMOKE SIGNALS TO

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PIGEONS TO TELEVISION, BUT THE

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AT TIME THE ENGINEERING OF

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ENGINEERING SYSTEMS IS ALWAYS

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TIED TO THE SPECIFIC AND BESPOKE

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FRAMEWORKS AND WHAT CLAUDE

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SHANNON DID WAS DEVELOP A

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EXTRACTION AND THEORY FOR

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COMMUNICATION INFORMATION

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THEORY.

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THAT INFORMATION IS OFTEN DRIVEN

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FROM THIS MANUSCRIPT IN THIS

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WAY, THAT ESSENTIALLY SIGNALS

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START AT A SOURCE, A MESSAGE IS

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CONVEYED, THAT SIGNAL HAS TO BE

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PROCESSED AND RECEIVED, AND THEN

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ENTERPRETINAL LOCATIONED BY

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DESTINATION.

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AND IT'S HUMANLY IMPOSSIBLE TO

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AVOID WHAT CLAUDE SHANNON CALLED

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NOISE, RIGHT?

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THAT THERE'S NO WAY TO GET TRUE

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FIDELITY WHEN THEIR MESSAGE IS

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SENT AND RECEIVED, WHETHER

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THAT'S OVER A PHONE LINE OR ME

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SPEAKING TO YOU IN FRONT.

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AND AS YOU BEGAN THINKING ABOUT

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THIS IS WHERE HE REALLY BEGAN

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DEFINING THE MATHEMATICAL

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FRAMEWORK FOR WHAT MOST OF US

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THINK OF TODAY OF BITS OF

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STORAGE UNITS RIGHT, LIKE HOW

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MANY MEGABITS OR ANYTHING ALONG

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THOSE NUMBERS THAT YOU THINK

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ABOUT FOR YOUR PHONE'S

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COMMUNICATION, SPEEDS OR STORAGE

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VARIABLES.

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BUT HE REALLY FUNDAMENTALLY

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DEFEIGNED 0 AND 1 AS THE ONLY

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WAY TO STORE AND COMMUNICATE

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DATA THROUGH TECHNOLOGY.

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AND IMPORTANTLY, HE WAS THE

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FIRST 1 THAT THEN TOOK THE NEXT

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STEP AND SAID YOU CAN ACTUALLY

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MEASURE INFORMATION.

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BITS ARE ACTUALLY UNITS OF

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MEASURE.

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PRIOR TO CLAUDE SHANNON THERE

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WAS NO UNIT OF MEASURE FOR HOW

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MUCH INFORMATION EXISTS IN ANY

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CONTEXT.

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AND HOPEFULLY CAN YOU SEE THAT

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THAT LAYS THE FOUNDATION FOR

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WHAT THEN EXPLODED INTO A

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COMMUNICATION FRAMEWORK,

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ADVANCEMENT OF COMPUTER

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TECHNOLOGIES AND WHAT INVARIABLY

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SEEPED INTO THE LANGUAGE OF

212
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BIOLOGY, RIGHT?

213
00:07:57,741 --> 00:08:00,711
SO IT'S NOT A CO INCIDENCE THAT

214
00:08:00,711 --> 00:08:03,380
WE TALK ABOUT A DNA CODE, THAT

215
00:08:03,380 --> 00:08:06,116
WE TALK ABOUT TRANSCRIPTION AND

216
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TRANSLATION AND DNA AND RNA,

217
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THAT THERE'S THIS NOTION OF

218
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MESSENGER RNA, AND EPIGENETICS

219
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WE TALK ABOUT READERS, WRITERS

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AND ERASERS, THAT'S CODE AS

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PROXIMAL TO CODE AND TECHNOLOGY

222
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BEGAN SEEPING EVERYWHERE AFTER

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CLAUDE SHANNON DEVELOPED HIS

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MATHEMATICAL FORMULA.

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AND PART OF MY HOPE TODAY IS TO

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REALLY FRAME THE ARC FROM CLAUDE

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SHANNON TO WHERE WE ARE TODAY IN

228
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A WAY THAT'S INCREDIBLY

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PRESCIENT.

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FOR THOSE THAT ARE GOING HOME

231
00:08:43,120 --> 00:08:44,254
AND READ HIS MANUSCRIPT, WHEN

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YOU WILL FIND IS THAT HALFWAY

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00:08:47,391 --> 00:08:49,927
THROUGH HE STARTS THINKING ABOUT

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LANGUAGE AS A MODEL FOR

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MEASURING INFORMATIONAL CONTENT

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AND HOW LANGUAGE ITSELF

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STRUCTURES AND CONSTRAINS

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INFORMATION AND HE DOES THIS

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EXPERIMENT OF IF YOU--HOW MUCH

240
00:09:04,341 --> 00:09:06,376
INFORMATION IS ENCODED IN THE

241
00:09:06,376 --> 00:09:07,778
STRUCTURE OF LANGUAGE THAT YOU

242
00:09:07,778 --> 00:09:09,379
CAN BRING IN, RIGHT?

243
00:09:09,379 --> 00:09:11,482
SO IF YOU START UNDERSTANDING

244
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THE FREQUENCY OF LETTERS ACROSS

245
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LANGUAGE, THE POSITION OF 2

246
00:09:17,387 --> 00:09:18,689
LETTERS NEXT TO EACH XRGT HOW

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OFTEN THAT HAPPENS YOU CAN START

248
00:09:20,124 --> 00:09:22,960
MAKING PREDICTION ANDS IF YOU

249
00:09:22,960 --> 00:09:25,863
JUST RANDOMLY IMPLEMENT THOSE

250
00:09:25,863 --> 00:09:26,930
RULES, RANDOM LETTERS START

251
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LOOKING MORE AND MORE LIKE

252
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SENTENCES OR YOU CAN SEE THIS

253
00:09:29,533 --> 00:09:31,635
HAPPENING ALL THE WAY FROM 1-5.

254
00:09:31,635 --> 00:09:34,638
BY NUMBER 5, RANDOM CODE

255
00:09:34,638 --> 00:09:37,040
ESSENTIALLY STARTS CREATING

256
00:09:37,040 --> 00:09:39,343
LANGUAGE LOOKING THINGS IF YOU

257
00:09:39,343 --> 00:09:43,447
JUST IMPLEMENT THESE RULES FOR

258
00:09:43,447 --> 00:09:44,414
COMMUNICATION AND HOW LANGUAGE

259
00:09:44,414 --> 00:09:48,051
STRUCTURES THROUGH CODE IN THAT

260
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SETTING, REMARKABLY IT TOOK

261
00:09:49,019 --> 00:09:51,522
ALMOST 75 YEARS FOR THAT TO COME

262
00:09:51,522 --> 00:09:52,589
FULL CIRCLE, IN WHAT I'M SURE

263
00:09:52,589 --> 00:09:56,260
ALL OF YOU KNOW OF AS CHAT GPT.

264
00:09:56,260 --> 00:10:02,432
SO CHAT GPT, ESSENTIALLY IS

265
00:10:02,432 --> 00:10:03,066
ASTRONOMICALLY MORE ADVANCED

266
00:10:03,066 --> 00:10:05,669
VERSION OF THAT PREDICTIVE

267
00:10:05,669 --> 00:10:07,471
ALGORITHM, FOR THESE LARGE

268
00:10:07,471 --> 00:10:09,473
LANGUAGE MODELS ESSENTIALLY

269
00:10:09,473 --> 00:10:12,109
PREDICT THE NEXT WORD IN THE

270
00:10:12,109 --> 00:10:15,946
SENTENCE AND BY JUST DOING THAT

271
00:10:15,946 --> 00:10:18,048
BASING ALL OTHER MATERIAL ON THE

272
00:10:18,048 --> 00:10:19,683
WEB, KNOWLEDGE ACTUALLY GETS

273
00:10:19,683 --> 00:10:20,284
CREATED, RIGHT?

274
00:10:20,284 --> 00:10:22,886
THE STRUCTURE OF LANGUAGE AND

275
00:10:22,886 --> 00:10:24,021
KNOWLEDGE ARE JUXTAPOSED RIGHT

276
00:10:24,021 --> 00:10:25,789
AGAINST EACH OTHER IN WAYS THAT

277
00:10:25,789 --> 00:10:28,625
SEEM ALMOST HUMAN RIGHT IN THE

278
00:10:28,625 --> 00:10:31,728
CONTEXT OF INTERACTION OF

279
00:10:31,728 --> 00:10:32,095
CHATGPT.

280
00:10:32,095 --> 00:10:34,064
THAT WAS MY PRIVATE INDULGENCE

281
00:10:34,064 --> 00:10:36,700
BECAUSE AS YOU CAN TELL I'M A

282
00:10:36,700 --> 00:10:38,735
CLAUDE SHANNON FANATIC BUT FOR

283
00:10:38,735 --> 00:10:43,106
ME IT WAS SUCH AN UNCANNY

284
00:10:43,106 --> 00:10:47,644
STATEMENT, RIGHT, YOUR MISSION

285
00:10:47,644 --> 00:10:49,713
ARK ROUND COMMUNICATION AND

286
00:10:49,713 --> 00:10:51,281
COMMUNICATION AND FOUNDATION FOR

287
00:10:51,281 --> 00:10:53,584
ALL WE DO AS A LAYER IN DATA

288
00:10:53,584 --> 00:10:57,187
SCIENCE AS A COMMON EXCHANGE

289
00:10:57,187 --> 00:10:57,888
ESSENTIALLY FOR HAVE VISION

290
00:10:57,888 --> 00:10:59,823
MOVING FORWARD AND WHEN WE

291
00:10:59,823 --> 00:11:02,259
STARTED OUR ARC TO DEVELOP

292
00:11:02,259 --> 00:11:03,760
PLATFORMS AND RESOURCES, I KNEW

293
00:11:03,760 --> 00:11:04,795
OF CLAUDE SHANNON BUT I

294
00:11:04,795 --> 00:11:06,763
DEPARTMENT KNOW HOW TO BUILD OR

295
00:11:06,763 --> 00:11:09,633
MAKE THINGS WORK ON BEHALF OF

296
00:11:09,633 --> 00:11:12,169
SHARING DATA, AND OUR FIRST

297
00:11:12,169 --> 00:11:13,003
PROJECT REALLY BEGAN AROUND

298
00:11:13,003 --> 00:11:15,906
WHAT'S STILL THE LEADING CAUSE

299
00:11:15,906 --> 00:11:17,407
IS EASILY RELATED TO DEATH IN

300
00:11:17,407 --> 00:11:20,510
CHILDREN ASK THAT WAS A YOUNG

301
00:11:20,510 --> 00:11:22,246
FACULTY AT CHOP AND MY GOAL WAS

302
00:11:22,246 --> 00:11:23,647
TO START COLLECTING AND

303
00:11:23,647 --> 00:11:25,515
GENERATING MOLECULAR DAT SETS

304
00:11:25,515 --> 00:11:31,588
FOR PEDIATRIC BRAIN TUMORS.

305
00:11:31,588 --> 00:11:33,190
AND THE REASON FOR THAT WAS

306
00:11:33,190 --> 00:11:34,925
BECAUSE WE AND MANY OF AND YOU

307
00:11:34,925 --> 00:11:35,792
MANY OTHERS HAD ADOPTED THE

308
00:11:35,792 --> 00:11:38,929
MODEL FOR WHAT IT TAKES TO

309
00:11:38,929 --> 00:11:40,464
DEVELOP NEW THERAPEUTICS FOR ANY

310
00:11:40,464 --> 00:11:41,598
CONDITION, RIGHT?

311
00:11:41,598 --> 00:11:45,002
THERE'S A FAIRLY STANDARDIZED

312
00:11:45,002 --> 00:11:46,937
RECAPITULATED FRAMEWORK THAT YOU

313
00:11:46,937 --> 00:11:49,506
SEE HERE THAT SORT OF CREATES A

314
00:11:49,506 --> 00:11:51,775
CHEVRON CHAIN OF PREDISCOVERY,

315
00:11:51,775 --> 00:11:53,744
DRUG DISCOVERY, PRECLINICAL

316
00:11:53,744 --> 00:11:55,512
DEVELOPMENT, CLINICAL TRIAL

317
00:11:55,512 --> 00:11:56,780
FRAMEWORK, FDA APPROVAL AND THEN

318
00:11:56,780 --> 00:12:00,684
POST MARKETING AND OTHER

319
00:12:00,684 --> 00:12:00,984
ACTIVITIES.

320
00:12:00,984 --> 00:12:03,153
THE REALITY IS THAT THIS IS NOT

321
00:12:03,153 --> 00:12:07,891
THE REALITY, NOTHING IS LINEAR

322
00:12:07,891 --> 00:12:09,826
IN THIS PROCESS, AND I THOUGHT

323
00:12:09,826 --> 00:12:10,994
THAT THOSE COLLEAGUES DID A

324
00:12:10,994 --> 00:12:14,097
REALLY GREAT JOB A COUPLE YEARS

325
00:12:14,097 --> 00:12:15,599
AGO CONVERTING THAT LINEAR

326
00:12:15,599 --> 00:12:19,236
FRAMEWORK AND WHAT THEY CALL

327
00:12:19,236 --> 00:12:19,736
PRECISION MEDICINE MAP.

328
00:12:19,736 --> 00:12:20,904
I DON'T EXPECT YOU TO LOOK AT IT

329
00:12:20,904 --> 00:12:24,107
AND BE ABLE TO READ EVERY SINGLE

330
00:12:24,107 --> 00:12:26,376
PIECE BUT WHAT YOU CAN SEE IT'S

331
00:12:26,376 --> 00:12:27,778
A COMPLEX RECURSIVE FRAMEWORK

332
00:12:27,778 --> 00:12:30,814
THAT HAS KEY ELEMENTS THAT ARE

333
00:12:30,814 --> 00:12:31,949
REQUIRED ESSENTIALLY TO GO

334
00:12:31,949 --> 00:12:34,117
END-TO-END AND THEY GO ALL THE

335
00:12:34,117 --> 00:12:38,622
WAY AND START AT BASIC RESEARCH

336
00:12:38,622 --> 00:12:40,123
AND TARGET IDEBTIFICATION TO

337
00:12:40,123 --> 00:12:42,926
TARGET FROM ECOLOGY OR BIOMARKER

338
00:12:42,926 --> 00:12:44,294
DEVELOPMENT, 1 WILL THINK

339
00:12:44,294 --> 00:12:45,996
TRANSLATING THAT RESEARCH INTO

340
00:12:45,996 --> 00:12:48,065
SOMETHING YOU CAN MEASURE AND

341
00:12:48,065 --> 00:12:48,432
ACT ON.

342
00:12:48,432 --> 00:12:52,069
THEN YOU DEVELOP A LEAD

343
00:12:52,069 --> 00:12:52,736
IDENTIFICATION AND YOU LAUNCH

344
00:12:52,736 --> 00:12:54,738
CLINICAL TRIAL ANDS YOU GO

345
00:12:54,738 --> 00:12:56,606
THROUGH FDA REVIEW, AND OTHER

346
00:12:56,606 --> 00:12:57,874
ACTIVITIES BUT THE FIRST 4

347
00:12:57,874 --> 00:13:01,078
STEPS, RIGHT OF BASIC RESEARCH,

348
00:13:01,078 --> 00:13:01,812
UNDERSTANDING THE BIOLOGY,

349
00:13:01,812 --> 00:13:08,852
DEVELOPING WAYS TO MEASURE IT,

350
00:13:08,852 --> 00:13:10,520
AND THEN IMP LEMMING THE

351
00:13:10,520 --> 00:13:11,788
FRAMEWORKS ARE KEY, SO HERE IN

352
00:13:11,788 --> 00:13:12,756
THE TOP LEFT CORNER BECAUSE THIS

353
00:13:12,756 --> 00:13:14,958
IS THE AREA OF UNMET NEEDS

354
00:13:14,958 --> 00:13:17,561
ACROSS ANY DEC SETTING OR

355
00:13:17,561 --> 00:13:20,097
CONDITION IF YOU WANT TO ADVANCE

356
00:13:20,097 --> 00:13:21,164
A PRECISION MEDICINE FRAMEWORK,

357
00:13:21,164 --> 00:13:24,668
YOU HAVE TO HAVE THESE PIECES IN

358
00:13:24,668 --> 00:13:26,570
PLACE, RIGHT IN YOU HAVE TO

359
00:13:26,570 --> 00:13:27,537
THINK ABOUT REPOSITORY, DATA

360
00:13:27,537 --> 00:13:31,274
MINING, ABOUT I O MEDICAL

361
00:13:31,274 --> 00:13:32,776
INFORMATICS, HYPOTHESIS

362
00:13:32,776 --> 00:13:34,678
GENERATION, GENO TYPES, CLINICAL

363
00:13:34,678 --> 00:13:36,013
TRIAL INN ROLLMENT OF SUBJECTS,

364
00:13:36,013 --> 00:13:39,182
ALL OF THESE BOXES YOU HAVE TO

365
00:13:39,182 --> 00:13:39,916
CREATE NO MATTER WHICH DISEASE

366
00:13:39,916 --> 00:13:42,686
YOU TAKE EMPLOY SO WE WERE IN

367
00:13:42,686 --> 00:13:43,120
PEDIATRIC CANCER.

368
00:13:43,120 --> 00:13:45,555
WE KNEW WE HAD TO DO THIS AND

369
00:13:45,555 --> 00:13:47,858
THE LEFT-HAND SIDE IS THE PILLAR

370
00:13:47,858 --> 00:13:50,160
THAT ANY COMMUNITY HAS TO

371
00:13:50,160 --> 00:13:50,460
UNDERTAKE.

372
00:13:50,460 --> 00:13:52,729
SO OUR MODEL WAS TO SAY HOW DO

373
00:13:52,729 --> 00:13:55,132
WE SOLVE THIS AS A COMMUNITY?

374
00:13:55,132 --> 00:13:58,402
AND SO WE TRANSFORM THAT INTO

375
00:13:58,402 --> 00:13:59,503
THIS METHODOLOGY AS A FRAMEWORK

376
00:13:59,503 --> 00:14:03,874
WHICH IS WE WILL TART WITH

377
00:14:03,874 --> 00:14:05,675
COLLECTING ANNOTATED SAMPLES

378
00:14:05,675 --> 00:14:06,576
CLINICALLY ANNOTATED SAMPLES.

379
00:14:06,576 --> 00:14:08,578
WE WILL TRANSFORM THEM INTO DATA

380
00:14:08,578 --> 00:14:10,347
MEANING YOU MIGHT SEQUENCE THOSE

381
00:14:10,347 --> 00:14:11,214
SAMPLES, CHARACTERIZE THEM, NOT

382
00:14:11,214 --> 00:14:13,283
JUST WHAT COMES OFF THE MACHINE,

383
00:14:13,283 --> 00:14:14,117
THAT'S NOT A SUBTRAIT FOR

384
00:14:14,117 --> 00:14:15,752
DISCOVERY BECAUSE YOU HAVE TO

385
00:14:15,752 --> 00:14:17,054
THEN STRUCTURE AND HARMONIZE AND

386
00:14:17,054 --> 00:14:19,723
CONNECK THAT DATA TO OTHER DATA

387
00:14:19,723 --> 00:14:21,091
SETS, THAT'S THAT INFORMATION

388
00:14:21,091 --> 00:14:22,859
LAYER AND THEN ONLY WHEN YOU

389
00:14:22,859 --> 00:14:25,896
UNDERSTAND THAT INFORMATION

390
00:14:25,896 --> 00:14:27,264
LAYER AND CAN ACTUALLY AND ACT

391
00:14:27,264 --> 00:14:31,601
ON IT AND BECOME KNOWLEDGE THAT

392
00:14:31,601 --> 00:14:34,604
THEY CAN TRANSLATE THAT AND THE

393
00:14:34,604 --> 00:14:36,339
HYPOTHESIS WAS THAT IN RARE

394
00:14:36,339 --> 00:14:37,441
DISEASE SETTING OF PEDIATRIC

395
00:14:37,441 --> 00:14:38,375
CANCER WE WILL HAVE TO LAY

396
00:14:38,375 --> 00:14:39,309
THERAPY AND WORK FLOW WITH

397
00:14:39,309 --> 00:14:40,077
INFRANCIS COLLINS STRUCKURE AND

398
00:14:40,077 --> 00:14:40,610
THAT'S WHAT YOU SEE THE

399
00:14:40,610 --> 00:14:42,679
CONTROLLER OF BANKS ON THE TOP

400
00:14:42,679 --> 00:14:44,881
AND BELOW, RIGHT?

401
00:14:44,881 --> 00:14:47,484
WE WANTED TO--THESE ARE AMBITION

402
00:14:47,484 --> 00:14:48,685
SPACES, PLATFORMS CREATED TO

403
00:14:48,685 --> 00:14:50,420
OTHER PLATFORMS ISSUES CREATE

404
00:14:50,420 --> 00:14:53,290
REALTIME DYNAMIC EXCHANGE OF

405
00:14:53,290 --> 00:14:54,925
DATA BETWEEN INSTITUTIONS THAT

406
00:14:54,925 --> 00:14:56,793
HARNESSED HARMONIZED DATA SETS

407
00:14:56,793 --> 00:14:59,329
THAT ALLOWED ANYBODY TO ITERATE

408
00:14:59,329 --> 00:15:00,764
THE HYPOTHESIS AROUND THE DAILY

409
00:15:00,764 --> 00:15:02,165
BASIS DATA BECAUSE WE RECOGNIZE

410
00:15:02,165 --> 00:15:03,800
THAT NO SINGLE INSTITUTION WOULD

411
00:15:03,800 --> 00:15:06,036
HAVE ENOUGH SAMPLES OR ENOUGH

412
00:15:06,036 --> 00:15:09,039
RESEARCHERS TO ACTUALLY PERFORM

413
00:15:09,039 --> 00:15:10,040
RESEARCH THAT'S REQUIRED.

414
00:15:10,040 --> 00:15:11,942
SO WE STARTED WITH 4

415
00:15:11,942 --> 00:15:13,977
INSTITUTIONS AND WE STAYED AT 4

416
00:15:13,977 --> 00:15:16,279
FOR A WHILE AND UNTIL WE STARTED

417
00:15:16,279 --> 00:15:18,248
GENERATING LARGE ENOUGH COHORTS

418
00:15:18,248 --> 00:15:19,749
WAS A VALUE PROPOSITION WAS THAT

419
00:15:19,749 --> 00:15:22,119
BY JOINING THE COHORT, YOU

420
00:15:22,119 --> 00:15:23,186
ACTUALLY EMPOWERED YOUR OWN

421
00:15:23,186 --> 00:15:26,823
DATA, THIS IS A KEY SORT OF

422
00:15:26,823 --> 00:15:27,324
SHIFT, RIGHT?

423
00:15:27,324 --> 00:15:28,859
THE MINUTE YOU HAVE A

424
00:15:28,859 --> 00:15:38,635
FOUNDATIONAL LAYER OF A RESOURCE

425
00:15:38,635 --> 00:15:41,304
WHERE ANY ENTITIAADS VALUE TO

426
00:15:41,304 --> 00:15:42,239
THE RESOURCE, YOU PASSED THE

427
00:15:42,239 --> 00:15:44,474
MILESTONE BECAUSE THE ECONOMICS

428
00:15:44,474 --> 00:15:46,443
OF HUMAN BEHAVIOR AND DORPHY

429
00:15:46,443 --> 00:15:50,547
START ALIGNING, RIGHT, IT'S THE

430
00:15:50,547 --> 00:15:52,182
TRADITIONAL COMPETITIVE OR

431
00:15:52,182 --> 00:15:53,483
SILOED APPROACHES ARE ACTUALLY

432
00:15:53,483 --> 00:15:55,085
DETRIMENTAL TO THOSE WHO MIGHT

433
00:15:55,085 --> 00:15:56,786
NOT SHARE BECAUSE THE COMMUNITY

434
00:15:56,786 --> 00:15:58,655
HAS ALREADY CREATED A LARGER

435
00:15:58,655 --> 00:16:00,090
RESOURCE THAN THEY HAVE ON THEIR

436
00:16:00,090 --> 00:16:00,524
OWN, RIGHT?

437
00:16:00,524 --> 00:16:02,159
SO WE KNEW THAT HAD TO BE THE

438
00:16:02,159 --> 00:16:02,359
CASE.

439
00:16:02,359 --> 00:16:04,528
WE KNEW THAT WOULD BE THE

440
00:16:04,528 --> 00:16:06,496
FULCRUM SHIFT, THE MINUTE WE HAD

441
00:16:06,496 --> 00:16:08,365
MORE SAMPLES AND DATA THAT ANY

442
00:16:08,365 --> 00:16:09,065
SINGLE INSTITUTION WOULD HAVE

443
00:16:09,065 --> 00:16:11,168
WOULD BE AT THEIR ADVANTAGE TO

444
00:16:11,168 --> 00:16:12,936
CONNECT AND THEN SUDDENLY ALL

445
00:16:12,936 --> 00:16:15,305
THE SITES MARCHED ALONG AND WE

446
00:16:15,305 --> 00:16:16,473
GREW THE OTHER SITES.

447
00:16:16,473 --> 00:16:19,809
TODAY THEY'RE ARE MORE THAN 5000

448
00:16:19,809 --> 00:16:22,112
ENROLLED PARTICIPANTS EMPLOY THE

449
00:16:22,112 --> 00:16:25,015
LARGEST PEDIATRIC BRAIN TUMOR

450
00:16:25,015 --> 00:16:26,716
STUDY EVER CREATED ACROSS

451
00:16:26,716 --> 00:16:29,352
SAMPLES, DATA SETS, MODELS.

452
00:16:29,352 --> 00:16:30,754
THE PROJECTS IN THIS CONTEXT ARE

453
00:16:30,754 --> 00:16:31,888
ALSO VERY LARGE AND IMPORTANTLY

454
00:16:31,888 --> 00:16:34,424
WE TOOK A COUPLE STEPS THAT I

455
00:16:34,424 --> 00:16:34,891
THINK WERE KEY.

456
00:16:34,891 --> 00:16:36,059
ONE YOU DON'T HAVE TO BE A

457
00:16:36,059 --> 00:16:38,395
MEMBER OF THE CONSORTIUM TO

458
00:16:38,395 --> 00:16:40,130
ACCESS DATA OR THE SAMPLES.

459
00:16:40,130 --> 00:16:42,799
AGAIN, YOU HAVE TO ALIGN TO THIS

460
00:16:42,799 --> 00:16:44,401
MENTAL MODEL, ANYBODY WHO CAN

461
00:16:44,401 --> 00:16:45,168
CONTRIBUTE TO THE DISCOVERY

462
00:16:45,168 --> 00:16:47,604
PROCESS SHOULD BE ABLE TO DO

463
00:16:47,604 --> 00:16:48,205
THIS.

464
00:16:48,205 --> 00:16:50,840
NOW THAT'S AN ANTITHETICAL

465
00:16:50,840 --> 00:16:53,276
POSITION TO MOST INSTITUTIONS

466
00:16:53,276 --> 00:16:53,877
AND INVESTIGATORS.

467
00:16:53,877 --> 00:16:56,613
THE WAY WE ACCOMPLISH THAT IS

468
00:16:56,613 --> 00:16:57,681
THROUGH PARTNERSHIPS WITH

469
00:16:57,681 --> 00:16:58,982
PATIENT ADVOCATES.

470
00:16:58,982 --> 00:17:01,284
SO THE PATIENT ADVOCATES, RIGHT,

471
00:17:01,284 --> 00:17:02,686
WHAT'S THEIR NUMBER 1 GOAL.

472
00:17:02,686 --> 00:17:04,921
THEIR NUMBER 1 GOAL IS

473
00:17:04,921 --> 00:17:07,257
ACCELERATE DISCOVERY. 

474
00:17:07,257 --> 00:17:08,158
THEY VERY RAPIDLY UNDERSTAND

475
00:17:08,158 --> 00:17:10,060
THAT THE MORE PEOPLE WHO WORK ON

476
00:17:10,060 --> 00:17:11,461
THEIR SAMPLES, THE MORE PEOPLE

477
00:17:11,461 --> 00:17:13,129
WHO HAVE ACCESS TO THEIR DATA,

478
00:17:13,129 --> 00:17:16,099
THE MORE LIKELY WE ARE IN THE

479
00:17:16,099 --> 00:17:17,367
COMMUNITY TO DEVELOP CURES.

480
00:17:17,367 --> 00:17:22,372
AND SO, WE EMPOWERED PATES AND

481
00:17:22,372 --> 00:17:25,108
THEIR FELLOWS TO ASK WHY ISN'T

482
00:17:25,108 --> 00:17:26,276
SOMETHING HAPPENING?

483
00:17:26,276 --> 00:17:27,978
AND IT WOULD NEVER BE SUFFICIENT

484
00:17:27,978 --> 00:17:30,080
TO SAY WELL I WANTED TO MAKE MY

485
00:17:30,080 --> 00:17:31,548
POST DOC HAD A JOB, AND THE

486
00:17:31,548 --> 00:17:33,483
FAMILY WOULD SAY, I WANT TO MAKE

487
00:17:33,483 --> 00:17:35,051
SURE MY KID GETS BETTER SO AS A

488
00:17:35,051 --> 00:17:36,052
COMMUNITY YOU HAVE TO GO THROUGH

489
00:17:36,052 --> 00:17:37,287
THE FRAMEWORK OF HOW DO YOU

490
00:17:37,287 --> 00:17:37,621
ADDRESS THAT?

491
00:17:37,621 --> 00:17:41,124
HOW DO YOU TART TO ALIEP THESE

492
00:17:41,124 --> 00:17:43,126
PROCESSES OF BASIC RESEARCH,

493
00:17:43,126 --> 00:17:43,927
STANDARD ACADEMEC PROCESS WITH

494
00:17:43,927 --> 00:17:46,096
COMMUNITY BUILDING AND

495
00:17:46,096 --> 00:17:47,030
ENGAGEMENT?

496
00:17:47,030 --> 00:17:49,899
AGAIN THE SECRET IS RADICAL

497
00:17:49,899 --> 00:17:52,269
TRANSPARENCY AROUND PROCESSES,

498
00:17:52,269 --> 00:17:54,371
SO THAT'S REPUTATIONAL FRAMEWORK

499
00:17:54,371 --> 00:17:55,171
SORE PARTNERSHIP OVERRIDES

500
00:17:55,171 --> 00:17:57,140
SELF-INTEREST AND IT'S MORE

501
00:17:57,140 --> 00:17:58,708
ADVANTAGEOUS FOR ANYONE TO

502
00:17:58,708 --> 00:18:00,076
COLLABORATE THAN TO OPERATE ON

503
00:18:00,076 --> 00:18:02,412
THEIR OWN.

504
00:18:02,412 --> 00:18:04,748
NOW, I WAS TREANED AS A

505
00:18:04,748 --> 00:18:05,682
NEUROSCIENTIST, I WORKED MY

506
00:18:05,682 --> 00:18:08,418
FIRST LAB WAS REALLY JUST A

507
00:18:08,418 --> 00:18:10,620
LABORATORY ENVIRONMENT.

508
00:18:10,620 --> 00:18:11,788
HERE SUDDENLY I WAS THRUST INTO

509
00:18:11,788 --> 00:18:13,823
THIS ENVIRONMENT OF SAYING,

510
00:18:13,823 --> 00:18:15,225
OKAY, --I HAVE ALL THESE PEOPLE

511
00:18:15,225 --> 00:18:16,993
TO AGREE TO SHARE SAMPLES, OR

512
00:18:16,993 --> 00:18:18,094
GENERATING ALL THIS DAT ANNOT

513
00:18:18,094 --> 00:18:21,097
ALL OF THEM HAVE

514
00:18:21,097 --> 00:18:22,299
BIOINFORMATICIANS, AND DATA

515
00:18:22,299 --> 00:18:24,334
SCIENTISTS AT THEIR SITES, IT'S

516
00:18:24,334 --> 00:18:27,804
A RIPE ENVIRONMENT FOR DESPERATE

517
00:18:27,804 --> 00:18:28,638
RESOURCES, SUDDENLY AGAIN

518
00:18:28,638 --> 00:18:30,840
EMERGING, IF 1 OF THOSE

519
00:18:30,840 --> 00:18:31,808
INSTITUTIONS CAN HARNESS DATA

520
00:18:31,808 --> 00:18:34,144
FASTER THAN ANOTHER INSTITUTION,

521
00:18:34,144 --> 00:18:35,779
YOU CREATE DISPARITIES, RATES OF

522
00:18:35,779 --> 00:18:36,179
EXCHANGE.

523
00:18:36,179 --> 00:18:37,480
SO WE THOUGHT ABOUT HOW DO WE

524
00:18:37,480 --> 00:18:39,382
CREATE THE NEXT LAYER ON TOP OF

525
00:18:39,382 --> 00:18:42,252
THE ANALOGUE LAYER OF SAMPLES

526
00:18:42,252 --> 00:18:45,622
AND DATA SETS, HOW DO WE CREATE

527
00:18:45,622 --> 00:18:46,489
SHARING PLATFORMS, ANALYTIC

528
00:18:46,489 --> 00:18:48,391
PLATFORMS THAT CAN BEA ACCESSED

529
00:18:48,391 --> 00:18:49,426
BY ANYONE EMPLOY AND SEVERAL

530
00:18:49,426 --> 00:18:50,527
THINGS HAPPEN THAT WE HAVEN'T

531
00:18:50,527 --> 00:18:51,995
FULLY SOLVED SO I PROMISE MYSELF

532
00:18:51,995 --> 00:18:53,630
I WILL TELL YOU A THINK THIS WE

533
00:18:53,630 --> 00:18:55,065
HAVEN'T SOLVED.

534
00:18:55,065 --> 00:18:59,035
VERY EARLY ON, WE GOTS LIKE THE

535
00:18:59,035 --> 00:19:00,403
FOLLOWING, IF YOU ARE GOING TO

536
00:19:00,403 --> 00:19:02,472
CARRY A PLATFORM ISSUES I WANT A

537
00:19:02,472 --> 00:19:04,240
PLATFORM FOR MY DISEASE AND WE

538
00:19:04,240 --> 00:19:06,609
WOULD GET ANOTHER PERSON WHO

539
00:19:06,609 --> 00:19:09,512
WOULD SAY I WANT A PLATFORM FOR

540
00:19:09,512 --> 00:19:10,513
THEIR BRAIN DISEASE.

541
00:19:10,513 --> 00:19:12,148
EVERYBODY WANTED THEIR OWN

542
00:19:12,148 --> 00:19:12,482
PLATFORM.

543
00:19:12,482 --> 00:19:16,052
AND IN MANY WAYS THE INSTINCT IS

544
00:19:16,052 --> 00:19:18,588
TO ORIENT AROUND YOUR COMMUNITY

545
00:19:18,588 --> 00:19:19,956
INTEREST, RIGHT, BRING PEOPLE

546
00:19:19,956 --> 00:19:20,390
TOGETHER.

547
00:19:20,390 --> 00:19:22,926
BUT THE REALITY IS IT'S

548
00:19:22,926 --> 00:19:23,493
IMPOSSIBLE FINANCIALLY AND

549
00:19:23,493 --> 00:19:25,362
RESOURCE WISE TO HAVE A HUNDRED

550
00:19:25,362 --> 00:19:28,098
DIFFERENT PLATFORMS FOR EACH

551
00:19:28,098 --> 00:19:30,166
INDIVIDUAL ENTITY, WE EVEN GOT

552
00:19:30,166 --> 00:19:31,668
PEOPLE WITHIN A SINGLE ENTITY

553
00:19:31,668 --> 00:19:33,336
SAY I WILL LIKE MY SUBTYPE TO

554
00:19:33,336 --> 00:19:35,472
HAVE MY OWN VERSION OF A

555
00:19:35,472 --> 00:19:36,573
PLATFORM AND I THINK PART OF IT

556
00:19:36,573 --> 00:19:40,043
HAS TO DO WITH THE FACT THAT YOU

557
00:19:40,043 --> 00:19:43,213
KNOW THEIR NETWORK RIGHT, IS SO

558
00:19:43,213 --> 00:19:45,615
TIGHT, THERE'S SUCH IDENTITY TO

559
00:19:45,615 --> 00:19:49,152
COORDINATION ACROSS PATIENTS AND

560
00:19:49,152 --> 00:19:50,553
RESEARCHERS, THAT'S THE INTINCT.

561
00:19:50,553 --> 00:19:52,222
OUR ARGUMENT WAS THAT ACTUALLY

562
00:19:52,222 --> 00:19:56,459
IF WE CREATED  1A PLATFORM YOU

563
00:19:56,459 --> 00:19:58,762
MIGHT ACTUALLY LEARN FROM EACH

564
00:19:58,762 --> 00:20:00,797
OTHER, CREATE PARTNERSHIPS YOU

565
00:20:00,797 --> 00:20:02,065
DEPARTMENT HAVE BEFORE, MAYBE

566
00:20:02,065 --> 00:20:03,700
CREATE SOMETHING FOR GENE X,

567
00:20:03,700 --> 00:20:04,434
THAT'S PLAGUING YOUR DISEASE

568
00:20:04,434 --> 00:20:07,570
EMPLOY IT WASN'T A MESSAGE THAT

569
00:20:07,570 --> 00:20:08,037
WAS IMMEDIATELY SOLD.

570
00:20:08,037 --> 00:20:09,272
IT'S STILL A MESSAGE WE'RE

571
00:20:09,272 --> 00:20:11,875
DEVELOPING BUT IT DID END UP

572
00:20:11,875 --> 00:20:13,877
BEING A REALITY IN MANY WAYS.

573
00:20:13,877 --> 00:20:17,213
AND SO I STILL FEEL LIKE WE

574
00:20:17,213 --> 00:20:18,314
HAVEN'T FOUND THAT PERFECT

575
00:20:18,314 --> 00:20:22,685
BALANCE OF CREATING A PLATFORM

576
00:20:22,685 --> 00:20:24,487
THAT'S CENTRALIZED AND COVERS A

577
00:20:24,487 --> 00:20:25,688
LARGE NUMBER OF DISEASE

578
00:20:25,688 --> 00:20:28,124
SETTINGS, CONTEXT CAN CONDITIONS

579
00:20:28,124 --> 00:20:29,426
THAT EMPOWERS COLLABORATION, BUT

580
00:20:29,426 --> 00:20:30,927
IN WAYS THAT SUFFICIENTLY

581
00:20:30,927 --> 00:20:32,662
ENGAGING FOR SOMEONE TO COME AND

582
00:20:32,662 --> 00:20:35,999
SAY, THAT'S MY PLATFORM, RIGHT,

583
00:20:35,999 --> 00:20:37,434
THE HUMAN LAYER OF IDENTITY IS

584
00:20:37,434 --> 00:20:43,907
STILL A CHALLENGE FOR US.

585
00:20:43,907 --> 00:20:46,543
WITH THAT IDEA THAT YOU CAN

586
00:20:46,543 --> 00:20:48,077
INTERSECT ACROSS DECS WAS ALSO

587
00:20:48,077 --> 00:20:49,512
SHARED BY NIH AND IN 2018 WE

588
00:20:49,512 --> 00:20:51,047
WERE FORTUNATE ENOUGH TO TAKE

589
00:20:51,047 --> 00:20:53,383
THOSE LESSONS LEARNED THROUGH

590
00:20:53,383 --> 00:20:54,651
THE GABRIELA MILLER

591
00:20:54,651 --> 00:20:56,719
[INDISCERNIBLE] FIRST DATA

592
00:20:56,719 --> 00:20:57,454
RESOURCE.

593
00:20:57,454 --> 00:20:58,922
GAB RIALLIA WAS A CHILD THAT HAD

594
00:20:58,922 --> 00:21:00,824
A BREAN TUMOR AND SUCCUMBED TO

595
00:21:00,824 --> 00:21:04,461
IT AND INIA A VIDEO CHALLENGED

596
00:21:04,461 --> 00:21:06,095
THE COMMUNITY AT LARMING TO STOP

597
00:21:06,095 --> 00:21:07,697
TALKING AND START DOING AND I

598
00:21:07,697 --> 00:21:10,233
THINK IF IF YOUR 10 YEAR-OLD

599
00:21:10,233 --> 00:21:13,803
WITH A BRAIN TUMOR, YOU CAN ALSO

600
00:21:13,803 --> 00:21:15,171
CURSE ON CAMERA WHICH SHE DID,

601
00:21:15,171 --> 00:21:20,944
AND THEY TOOK IT TO THE NEXT

602
00:21:20,944 --> 00:21:21,311
LEVEL.

603
00:21:21,311 --> 00:21:24,113
NOT ONLY ARE YOU GOING TO WORK

604
00:21:24,113 --> 00:21:25,215
ACROSS ALL PEDIATRIC CANCER, WE

605
00:21:25,215 --> 00:21:29,385
WILL BRING IN STRUCTURAL DEFECT

606
00:21:29,385 --> 00:21:30,320
ANDS CONGENITAL ABNORMALITIES.

607
00:21:30,320 --> 00:21:31,588
I REMEMBER THE FIRST MEETING WE

608
00:21:31,588 --> 00:21:33,256
HELD FOR THE INITIAL AWARDEES OF

609
00:21:33,256 --> 00:21:36,559
SOME OF THE RESOURCES AT THE END

610
00:21:36,559 --> 00:21:37,594
OF THE MEETING, 2 PROMINENT

611
00:21:37,594 --> 00:21:40,129
PEOPLE CAME UP TO ME, BY CHANCE

612
00:21:40,129 --> 00:21:41,531
FROM THE RESPECTIVE SIDES AND

613
00:21:41,531 --> 00:21:44,200
THEY SAID ADAM FOR THE NEXT

614
00:21:44,200 --> 00:21:45,535
MEETING CAN WE HAVE THE CANCER

615
00:21:45,535 --> 00:21:48,271
PEOPLE HAVE THEIR MEETING AND

616
00:21:48,271 --> 00:21:51,074
THE STRUCTURAL BIRTH DEFECTS

617
00:21:51,074 --> 00:21:52,108
HAVE THEIR MEETING, IT DOESN'T

618
00:21:52,108 --> 00:21:54,177
MAKE SENSE TO HAVE US IN THE

619
00:21:54,177 --> 00:21:54,577
SAME ROOM.

620
00:21:54,577 --> 00:21:56,346
THEY DON'T KNOW WHAT THEY'RE

621
00:21:56,346 --> 00:21:56,946
TALKING ABOUT, LITERALLY THEY

622
00:21:56,946 --> 00:21:59,716
SAID THAT, IT WAS A BIAS, CANCER

623
00:21:59,716 --> 00:22:03,319
PEOPLE WERE FOCUSED ON SOMATIC

624
00:22:03,319 --> 00:22:05,588
OPERATIONS. 

625
00:22:05,588 --> 00:22:06,956
AND THE STRUCTURAL 1S WERE

626
00:22:06,956 --> 00:22:08,825
TALKING ABOUT GERM LINE

627
00:22:08,825 --> 00:22:09,359
ALTERATIONS.

628
00:22:09,359 --> 00:22:10,560
IT WAS 2 DIFFERENT CONTEXT.

629
00:22:10,560 --> 00:22:12,462
IT TOOK US TIME TO BUILD THE

630
00:22:12,462 --> 00:22:14,464
NEXT ITERATION OF INFRASTRUCTURE

631
00:22:14,464 --> 00:22:15,498
THAT CROSS-EMPOWERED THAT

632
00:22:15,498 --> 00:22:16,099
DISCOVERY, RIGHT?

633
00:22:16,099 --> 00:22:19,269
WHERE SOMEONE WHO NORMALLY

634
00:22:19,269 --> 00:22:21,371
WOULDN'T LOOK AT A SOMATIC

635
00:22:21,371 --> 00:22:22,772
ALTERATION IN CANCER WILL

636
00:22:22,772 --> 00:22:23,973
SUDDENLY DISCOVER, HEY, A YEN

637
00:22:23,973 --> 00:22:26,075
THAT CAUSES CANCER IS ALSO A

638
00:22:26,075 --> 00:22:28,611
GERM LINE IMPLICATED YEEP,

639
00:22:28,611 --> 00:22:30,446
PERHAPS IN OPPOSITE DIRECTION

640
00:22:30,446 --> 00:22:32,682
AND SUDDENLY THAT REALITY OF A

641
00:22:32,682 --> 00:22:35,618
COMMON INFRASTRUCTURE THAT

642
00:22:35,618 --> 00:22:40,723
SUPPORTS SHARED QUERY-ABILITY

643
00:22:40,723 --> 00:22:41,891
ACROSS RESOURCES EMERGED.

644
00:22:41,891 --> 00:22:43,560
THIS WILL NEVER HAVE HAPPENED IF

645
00:22:43,560 --> 00:22:45,895
IT WASN'T FOR THE NIH-BASED

646
00:22:45,895 --> 00:22:46,129
VISION.

647
00:22:46,129 --> 00:22:47,630
THE COMMUNITY ITSELF WILL NOT

648
00:22:47,630 --> 00:22:48,598
TAKE THOSE STEPS ON THEIR OWN

649
00:22:48,598 --> 00:22:50,166
AND I THINK THAT'S A REALLY

650
00:22:50,166 --> 00:22:54,470
UNIQUE CONTEXT THAT WAS A

651
00:22:54,470 --> 00:22:56,072
LEARNING EXPERIENCE FOR ME, THAT

652
00:22:56,072 --> 00:23:01,511
PLATFORMS NOT ONLY SUPPORT AND

653
00:23:01,511 --> 00:23:02,245
ENHANCE COORDINATION, BUT

654
00:23:02,245 --> 00:23:03,079
EXTREMELY POWERFUL TO BRENG

655
00:23:03,079 --> 00:23:04,347
TOGETHER PEOPLE WHO MAY NOT UPON

656
00:23:04,347 --> 00:23:06,983
EACH OTHER RIGHT IN THAT

657
00:23:06,983 --> 00:23:07,317
CONTEXT.

658
00:23:07,317 --> 00:23:16,459
YOU ARE TO ADDRESS A NUMBER OF

659
00:23:16,459 --> 00:23:17,727
SETTINGS, MOLECULAR DATA SETS,

660
00:23:17,727 --> 00:23:19,128
DISEASE CONTEXT AND DEC

661
00:23:19,128 --> 00:23:20,630
CONDITIONS THAT WERE NOT RELATED

662
00:23:20,630 --> 00:23:25,602
AND THEY CAN JOINTLY SHARE

663
00:23:25,602 --> 00:23:26,669
QUERIABLE BY COMMUNITY, SO TODAY

664
00:23:26,669 --> 00:23:29,539
WE HAVE MORE THAN 21,000 WHOLE

665
00:23:29,539 --> 00:23:32,375
GENOMES IN THIS PLATFORM ACROSS

666
00:23:32,375 --> 00:23:37,814
MORE THAN 6000 PHENOTYPES.

667
00:23:37,814 --> 00:23:40,083
MANY ARE PHENOTYPES THAT THIS

668
00:23:40,083 --> 00:23:42,619
AREA CARE ABOUT, AND VERY FEW

669
00:23:42,619 --> 00:23:44,487
PEOPLE HAVE QUERIES ABOUT THOSE

670
00:23:44,487 --> 00:23:46,089
DATA SETS, AND THEY INCLUDE

671
00:23:46,089 --> 00:23:48,091
CHANGES IN THE PLATFORM WHICH IS

672
00:23:48,091 --> 00:23:48,891
A PARTNERED ENVIRONMENT HERE.

673
00:23:48,891 --> 00:23:51,027
THIS IS 1 OF THE LARNLEST WHOLE

674
00:23:51,027 --> 00:23:52,595
GENOME AND MOLECULAR DATA SETS

675
00:23:52,595 --> 00:23:55,231
FOR PEDIATRIC CANCER AND

676
00:23:55,231 --> 00:23:56,899
STRUCTURAL BIRTH DEFECTS AND

677
00:23:56,899 --> 00:23:57,834
ADOPTS THE FOLLOWING PRINCIPLES

678
00:23:57,834 --> 00:23:59,202
THAT WE'RE STILL STRIVING TO

679
00:23:59,202 --> 00:24:00,003
ACCOMPLISH, SO AMOUNT OF

680
00:24:00,003 --> 00:24:00,703
EXPERIENCE BEING TRANSPARENT

681
00:24:00,703 --> 00:24:02,105
WITH YOU, THIS IS OUR REACH

682
00:24:02,105 --> 00:24:03,506
GOAL, WE HAVE NOT YET REACHED

683
00:24:03,506 --> 00:24:05,541
IT, BUT OUR LEARNED EXPERIENCES

684
00:24:05,541 --> 00:24:12,215
IF YOU DO THE FOLLOWING, RIGHT,

685
00:24:12,215 --> 00:24:16,052
YOU ENGENDER SCIENTIFIC WAYS YOU

686
00:24:16,052 --> 00:24:17,286
WOULDN'T HAVE EXPECTED.

687
00:24:17,286 --> 00:24:18,688
IT'S NONLOCAL, IT'S NOT ABOUT

688
00:24:18,688 --> 00:24:22,225
BEING IN THE SAME INSTITUTION OR

689
00:24:22,225 --> 00:24:22,959
SAME UNIVERSITY.

690
00:24:22,959 --> 00:24:25,928
YOU HAVE MACK MYSELF THE NUMBER

691
00:24:25,928 --> 00:24:27,096
OF INFORMATION USED FOR YOUR

692
00:24:27,096 --> 00:24:28,731
GOAL AS A PLATFORM OPERATOR

693
00:24:28,731 --> 00:24:29,999
SHOULD BE TO BRENG AS MANY

694
00:24:29,999 --> 00:24:33,803
DIFFERENT PEOPLE TO THE PLATFORM

695
00:24:33,803 --> 00:24:34,370
AS POSSIBLE.

696
00:24:34,370 --> 00:24:34,771
RIGHT?

697
00:24:34,771 --> 00:24:36,172
TYPICALLY THE OPPOSITE OF MOST

698
00:24:36,172 --> 00:24:38,374
DATA PLATFORMS THAT SAYS, OKAY,

699
00:24:38,374 --> 00:24:40,076
I'M GOING TO GATE KEEP THE DATA

700
00:24:40,076 --> 00:24:42,111
FOR A CERTAIN PURPOSE, RIGHT?

701
00:24:42,111 --> 00:24:44,180
YOU ACTUALLY MEASURE SUCCESS BY

702
00:24:44,180 --> 00:24:44,647
INCREASING THE NUMBER.

703
00:24:44,647 --> 00:24:45,748
AT THE SAME TIME THAT YOU'RE

704
00:24:45,748 --> 00:24:47,183
INCREASING THE NUMBER, YOU WANT

705
00:24:47,183 --> 00:24:48,785
TO INCREASE THE DIVERSITY,

706
00:24:48,785 --> 00:24:51,421
RIGHT, BECAUSE YOU ESSENTIALLY

707
00:24:51,421 --> 00:24:53,289
WANT TO ENGENDER DIFFERENT

708
00:24:53,289 --> 00:24:54,824
DISCIPLINES, WHERE I CAN TALK

709
00:24:54,824 --> 00:24:56,426
DIFFERENTLY ABOUT DATA AND USE

710
00:24:56,426 --> 00:24:57,527
DIFFERENT DATA DIFFERENTLY TO

711
00:24:57,527 --> 00:24:59,896
ACTUALLY BUMP INTO EACH OTHER IN

712
00:24:59,896 --> 00:25:02,031
THE VIRTUAL DOMAIN, THIS IS 1 OF

713
00:25:02,031 --> 00:25:02,965
THE HARDEST CHALLENGES, I THINK

714
00:25:02,965 --> 00:25:04,500
I WAS TALKING TO SOMEBODY

715
00:25:04,500 --> 00:25:08,271
EARLIER HERE TODAY WHO SAID

716
00:25:08,271 --> 00:25:09,772
THEY'RE WORKING ACROSS

717
00:25:09,772 --> 00:25:10,373
BIOINFORMATICIANS AND

718
00:25:10,373 --> 00:25:11,874
CLINICIANS, THEY SPEAK

719
00:25:11,874 --> 00:25:12,775
COMPLETELY DIFFERENT LANGUAGES,

720
00:25:12,775 --> 00:25:17,480
RIGHT, ABOUT THE EXACT SAME

721
00:25:17,480 --> 00:25:17,980
PATIENT, RIGHT?

722
00:25:17,980 --> 00:25:20,516
AND THEN TO DO THAT, YOU HAVE TO

723
00:25:20,516 --> 00:25:22,452
SUPPORT FRAMEWORKS THAT CONNECT

724
00:25:22,452 --> 00:25:24,687
NATURALLY BETWEEN THESE

725
00:25:24,687 --> 00:25:26,556
COMMUNITIES AND ACHIEVE AND THIS

726
00:25:26,556 --> 00:25:28,057
IS OUR GOAL FRICTIONLESS FLOW OF

727
00:25:28,057 --> 00:25:28,424
DATA.

728
00:25:28,424 --> 00:25:31,961
THE FLOW OF DATA MEANS A COUPLE

729
00:25:31,961 --> 00:25:33,162
DIFFERENT THINGS HERE, 1 CAN

730
00:25:33,162 --> 00:25:34,330
SOMEONE ACTUALLY FIND DATA AND

731
00:25:34,330 --> 00:25:35,698
KNOW IT'S THERE, USE IT, TOUCH

732
00:25:35,698 --> 00:25:39,969
IT, PLAY WITH IT, AND CAN PEOPLE

733
00:25:39,969 --> 00:25:40,770
DO THAT TOGETHER.

734
00:25:40,770 --> 00:25:42,405
SO THIS IS THE WORK FLOW WE

735
00:25:42,405 --> 00:25:43,339
STRIVE TO ACHIEVE AND BY AND

736
00:25:43,339 --> 00:25:45,341
LARNL YOU COULD DO THIS TODAY ON

737
00:25:45,341 --> 00:25:47,410
THE KIDS FIRST PLATFORM OR THE

738
00:25:47,410 --> 00:25:47,944
INCLUDE PLATFORM.

739
00:25:47,944 --> 00:25:50,213
ANYBODY CAN LOG ON AND FIND OUT

740
00:25:50,213 --> 00:25:52,048
WHEN'S IN THE DATA RESOURCE AND

741
00:25:52,048 --> 00:25:56,719
THEN THEY CAN NAVIGATE AND

742
00:25:56,719 --> 00:25:57,787
EXPLORE THE DATA ACCESS.

743
00:25:57,787 --> 00:25:59,222
MOST PEOPLE WANT TO DO IS FIGURE

744
00:25:59,222 --> 00:25:59,889
OUT WHAT'S THERE.

745
00:25:59,889 --> 00:26:01,224
THEY WANT TO CREATE COHORTS

746
00:26:01,224 --> 00:26:04,627
BASED ON WHAT THEY CARE ABOUT.

747
00:26:04,627 --> 00:26:05,561
OUR BIGGEST CHALLENGE IS THAT

748
00:26:05,561 --> 00:26:09,298
MOST PEOPLE DON'T KNOW WHAT

749
00:26:09,298 --> 00:26:11,534
QUESTIONS TO ASK RIGHT, IT'S AN

750
00:26:11,534 --> 00:26:12,468
ITERATIVE PROCESS, I DIDN'T KNOW

751
00:26:12,468 --> 00:26:14,771
YOU HAD THIS TOO, OR THAT.

752
00:26:14,771 --> 00:26:16,939
SO SEARCH SPACE FOR PEOPLE IS

753
00:26:16,939 --> 00:26:17,807
UNDEFINED, THATIA A CHAL ENK AND

754
00:26:17,807 --> 00:26:21,110
I WILL COME BACK TO THAT AT THE

755
00:26:21,110 --> 00:26:21,277
END.

756
00:26:21,277 --> 00:26:24,580
THE OTHER CHALLENGE A DATA CHEKS

757
00:26:24,580 --> 00:26:25,815
PROCESS IS VERY HETEROGENERATED

758
00:26:25,815 --> 00:26:27,784
A USE, SOME PEOPLE COLLECT FROM

759
00:26:27,784 --> 00:26:29,819
EHR, SOME PEOPLE HAVE

760
00:26:29,819 --> 00:26:31,287
INSTRUMENTS, CRFs THEY

761
00:26:31,287 --> 00:26:33,122
DESIGNED THEMSELVES, NOBODY

762
00:26:33,122 --> 00:26:34,624
ADOPTED A CENTRALIZED MODEL

763
00:26:34,624 --> 00:26:36,559
ACROSS ALL PEDIATRIC CANCERS AND

764
00:26:36,559 --> 00:26:38,261
STRUCTURAL BIRTH DEFECS SO WE

765
00:26:38,261 --> 00:26:39,562
HAD TO IMPLEMENT FRAMEWORKS THAT

766
00:26:39,562 --> 00:26:44,934
STILL ALLOWED A GENO TYPE TO

767
00:26:44,934 --> 00:26:45,334
PHENOTYPE CONNECK.

768
00:26:45,334 --> 00:26:47,136
YOU CAN IMAGINE SOMEONE LIKE ME

769
00:26:47,136 --> 00:26:48,671
WHO THINKS ABOUT BRAIN TUMORS, I

770
00:26:48,671 --> 00:26:50,106
NOTICE A KID HAS A BIRTH DEFECT

771
00:26:50,106 --> 00:26:54,210
IN THE HEART, I WILL SAY YEAH, A

772
00:26:54,210 --> 00:26:55,278
CARDIAC BIRTH DEFECT BUT A KID

773
00:26:55,278 --> 00:26:57,814
THAT MIGHT BE SEEN FOR A CARDIAC

774
00:26:57,814 --> 00:26:59,582
BERTH DEFECT WILL HAVE VERY WELL

775
00:26:59,582 --> 00:27:01,083
DEFINED WHICH PART OF THE HEART,

776
00:27:01,083 --> 00:27:04,821
WHAT TYPE OF DEFECT IT IS THOSE

777
00:27:04,821 --> 00:27:07,323
ARE DIFFERENT TERMINOLOGIES THAT

778
00:27:07,323 --> 00:27:07,924
WOULD NORMALLY INTERSECT BUT

779
00:27:07,924 --> 00:27:09,926
THEY WOULD HAVE THE SAME

780
00:27:09,926 --> 00:27:11,527
DPENETTIC BASIS AT THE GENOME

781
00:27:11,527 --> 00:27:14,330
LAYER SO YOU HAVE TO POWER THE

782
00:27:14,330 --> 00:27:14,864
CONNECTIVITY OF RESOURCES.

783
00:27:14,864 --> 00:27:16,232
AND WE DID THIS THROUGH

784
00:27:16,232 --> 00:27:19,435
LEVERAGING ONTOLOGIES IN WAYS

785
00:27:19,435 --> 00:27:21,237
THAT'S VERY VISIBLE.

786
00:27:21,237 --> 00:27:22,705
AND JUST FOR FUN I SAW I'M DOING

787
00:27:22,705 --> 00:27:25,641
THIS HERE, I WILL SHOW YOU AN

788
00:27:25,641 --> 00:27:30,112
EXAMPLE OF THIS, I THINK I'M

789
00:27:30,112 --> 00:27:33,149
LOGGING INTO THE INCLUDE

790
00:27:33,149 --> 00:27:34,350
PLATFORM HERE, I THINK?

791
00:27:34,350 --> 00:27:38,187
OKAY, HERE WE GO.

792
00:27:38,187 --> 00:27:40,823
SO I'LL DO A PHENOTYPIC SEARCH,

793
00:27:40,823 --> 00:27:42,225
I WILL CLICK ON PARTICIPANT AND

794
00:27:42,225 --> 00:27:44,727
I DO IT THROUGH A COUPLE

795
00:27:44,727 --> 00:27:46,295
DIFFERENT ONTOLOGIES, EITHER

796
00:27:46,295 --> 00:27:48,631
THROUGH DIAGNOSIS ONTOLOGY,

797
00:27:48,631 --> 00:27:50,800
CALLED MONDOOR, OR PHENOTYPIC

798
00:27:50,800 --> 00:27:56,539
ONTOLOGY, BUT LET'S JUST TRY 1,

799
00:27:56,539 --> 00:27:57,573
I CAN SEARCH FOR HEARING OTHERS

800
00:27:57,573 --> 00:27:57,773
RIGHT?

801
00:27:57,773 --> 00:27:59,609
SO YOU WILL SEE THIS TREE EXPAND

802
00:27:59,609 --> 00:28:02,612
AND WHAT YOU WILL SEE IS NUMBERS

803
00:28:02,612 --> 00:28:05,214
HERE ACROSS THIS, IS WHAT THIS

804
00:28:05,214 --> 00:28:06,749
MEANS ESSENTIALLY IS THAT ON THE

805
00:28:06,749 --> 00:28:08,618
LEFT HAND COLUMN, THAT'S THE

806
00:28:08,618 --> 00:28:10,720
EXACT WAY THAT SOMEONAN OITATED

807
00:28:10,720 --> 00:28:12,221
THAT PATIENT, RIGHT?

808
00:28:12,221 --> 00:28:14,557
THEY ACTUALLY ANNOTATED IT AT

809
00:28:14,557 --> 00:28:16,325
THAT LEVEL BUT AS YOU GO UP YOU

810
00:28:16,325 --> 00:28:17,693
WILL SEE THAT THE NUMBERS ON THE

811
00:28:17,693 --> 00:28:19,495
RIGHT GET BIGGER AND THAT'S

812
00:28:19,495 --> 00:28:23,299
BECAUSE WE'RE SUMMING UP, RIGHT,

813
00:28:23,299 --> 00:28:24,433
SPECIFIC PHENOTYPES WITH OUR

814
00:28:24,433 --> 00:28:26,369
LAST PHENOTYPES AND SOMEONE CAN

815
00:28:26,369 --> 00:28:31,707
TAKE THIS COHORT AND APPLY IT

816
00:28:31,707 --> 00:28:35,544
AND GET ALL 25, 2000 SUBJECTS IN

817
00:28:35,544 --> 00:28:36,512
THIS COHORT, BIOSPECIMENS THEY

818
00:28:36,512 --> 00:28:38,247
HAVE, WHAT DATA THEY HAVE AND

819
00:28:38,247 --> 00:28:41,350
THEN OPERATE ON THAT DATA MOVING

820
00:28:41,350 --> 00:28:42,585
FORWARD SO THEY CAN SELECT THIS

821
00:28:42,585 --> 00:28:45,755
DATA AND BRING IT INTO A CLOUD

822
00:28:45,755 --> 00:28:46,789
ENVIRONMENT AND ANALYZE IT I

823
00:28:46,789 --> 00:28:48,157
DON'T KNOW HOW MANY PEOPLE HERE

824
00:28:48,157 --> 00:28:50,960
HAVE EVER LOGGED ON TO A CLOUD

825
00:28:50,960 --> 00:28:53,262
TO ANALYZE GENOMIC DATA,

826
00:28:53,262 --> 00:28:55,464
HOPEFULLY SOME BUT IT TURNS OUT

827
00:28:55,464 --> 00:28:57,400
THAT'S NOT AS LARGE A GROUP OF

828
00:28:57,400 --> 00:28:59,201
PEOPLE AS PEOPLE WHO HAVE

829
00:28:59,201 --> 00:28:59,902
BENEFITS FROM SOMEONE WHO'S DONE

830
00:28:59,902 --> 00:29:01,404
THAT ALREADY AND CREATED AN

831
00:29:01,404 --> 00:29:04,040
EXCEL SHEET FOR THEM WITH ALL

832
00:29:04,040 --> 00:29:04,974
THE INFORMATION IN THERE.

833
00:29:04,974 --> 00:29:06,976
THE KEY PART IS YOU HAVE TO HAVE

834
00:29:06,976 --> 00:29:08,244
A CENTRALIZED ENVIRONMENT FOR

835
00:29:08,244 --> 00:29:13,683
ANALYSIS, IN ORDER TO MAKE

836
00:29:13,683 --> 00:29:15,117
SHAREABLE EXCEL SHEETS THAT

837
00:29:15,117 --> 00:29:15,751
INTEGRATE HARMONIZED DAILY BASIS

838
00:29:15,751 --> 00:29:19,422
THEA BECAUSE YOU WANT THE NEXT

839
00:29:19,422 --> 00:29:20,723
PERSON'S NOT INCLUDED TO ADD

840
00:29:20,723 --> 00:29:21,924
THEIR DATA INTO YOUR EXCEL SHEET

841
00:29:21,924 --> 00:29:23,459
ISSUES THE OHM WAY THEY CAN DO

842
00:29:23,459 --> 00:29:25,194
THAT IF THEY EARN THE SAME

843
00:29:25,194 --> 00:29:26,395
PIPELINE, WORK FLOWS TO

844
00:29:26,395 --> 00:29:27,096
INTERSECT.

845
00:29:27,096 --> 00:29:28,597
SO THE PLATFORM LEVERAGES TO

846
00:29:28,597 --> 00:29:31,667
CLOUD NOT JUST BECAUSE THE DATA

847
00:29:31,667 --> 00:29:33,402
ARE LARGE BUT BECAUSE A CLOUD IS

848
00:29:33,402 --> 00:29:35,938
A FRAMEWORK FOR HARMONIZATION

849
00:29:35,938 --> 00:29:37,340
AND INTEGRATION OF DATA EVEN IF

850
00:29:37,340 --> 00:29:39,208
THE DATA ARE SMALL, YOU CAN

851
00:29:39,208 --> 00:29:41,811
CONNECT TO AND BE CONTEXTUALIZED

852
00:29:41,811 --> 00:29:52,288
IN THE CONTEXT IN THE LONGER

853
00:29:56,926 --> 00:29:57,226
TERM.

854
00:29:57,226 --> 00:30:01,964
I PUT THIS SLY UP SO YOU CAN SEE

855
00:30:01,964 --> 00:30:03,532
THE CASE, YOU CAN ALSO DO THIS

856
00:30:03,532 --> 00:30:05,034
FROM THE GENOMIC SIDE AND THE

857
00:30:05,034 --> 00:30:06,435
GENOMIC SIDE IS A REAL EXCITING

858
00:30:06,435 --> 00:30:10,406
FRAIRM WORK BECAUSE IT TURNS OUT

859
00:30:10,406 --> 00:30:13,743
THAT IF YOU PUT A GENE OF

860
00:30:13,743 --> 00:30:15,711
INTEREST BECAUSE OF THE WAY THAT

861
00:30:15,711 --> 00:30:16,979
THE FRAMEWORK IS STRUCTURED, YOU

862
00:30:16,979 --> 00:30:18,647
WILL IMMEDIATELY FIND THAT THAT

863
00:30:18,647 --> 00:30:20,716
JEEP IS IMPLICATED POTENTIAL IN

864
00:30:20,716 --> 00:30:23,185
MANY OTHER CONTEXT YOU WERE NOT

865
00:30:23,185 --> 00:30:24,920
INTERESTED IN, RIGHT, BIOLOGY IS

866
00:30:24,920 --> 00:30:25,621
SUFFICIENTLY CONSERVATIVE THAT

867
00:30:25,621 --> 00:30:27,423
YOU WILL SEE THESE COMBINATIONS

868
00:30:27,423 --> 00:30:28,791
OF PHENOTYPES AND GENO TYPES

869
00:30:28,791 --> 00:30:30,292
THAT OVERLAP, AND THAT'S A

870
00:30:30,292 --> 00:30:34,330
POWERFUL FRAMEWORK TO BEGIN

871
00:30:34,330 --> 00:30:37,933
PRIORITIZING WHICH GENES MATTER

872
00:30:37,933 --> 00:30:41,370
FOR YOU OR SOMEBODY ELSE, IF

873
00:30:41,370 --> 00:30:44,040
SOMEONE WITH DOWNS SYNDROME HAS

874
00:30:44,040 --> 00:30:45,541
A CERTAIN PHENOTYPE, ANOTHER 1

875
00:30:45,541 --> 00:30:47,176
DOESN'T HAVE THAT CERTAIN

876
00:30:47,176 --> 00:30:47,810
PHENOTYPE, YOU AREN'T

877
00:30:47,810 --> 00:30:49,278
NECESSARILY THINKING ABOUT DOWNS

878
00:30:49,278 --> 00:30:50,846
SYNDROME BUT 1 OF THEM HAD

879
00:30:50,846 --> 00:30:54,250
HEARING LOSS OR DIDN'T ISSUES IT

880
00:30:54,250 --> 00:30:56,786
STARTS OVERLAPPING WITH YOUR

881
00:30:56,786 --> 00:30:59,388
SPECIFIC INTEREST IN THE

882
00:30:59,388 --> 00:31:00,689
PHENOTYPE GENETIC CONTEXT.

883
00:31:00,689 --> 00:31:04,226
GANNA, SHARE WITH YOU THE HARD

884
00:31:04,226 --> 00:31:04,427
PARTS.

885
00:31:04,427 --> 00:31:07,730
THE HARD PARTS ARE THAT THE

886
00:31:07,730 --> 00:31:10,433
OPPORTUNITY FOR DATA GENERATION

887
00:31:10,433 --> 00:31:11,667
HAVE EXPONENTIALLY GROWN SO WE

888
00:31:11,667 --> 00:31:19,442
CAN GENERATE DATA ON SAMPLES IN

889
00:31:19,442 --> 00:31:23,712
AN INCREASINGLY LONG RAINCHL, WE

890
00:31:23,712 --> 00:31:24,380
CAN SHORTEN, LEPGHTEN, CREATE

891
00:31:24,380 --> 00:31:26,849
EACH OF THOSE AND THEY EACH OF

892
00:31:26,849 --> 00:31:28,184
THOSE LAYERS HAS ANOTHER 5 OR 6

893
00:31:28,184 --> 00:31:30,319
LAYERS THAT THE GENOME CAN BE

894
00:31:30,319 --> 00:31:31,253
DUPLICATED OR TRANSLOCATED OR

895
00:31:31,253 --> 00:31:34,723
HAVE A SINGLE PULL MUTATION FOR

896
00:31:34,723 --> 00:31:35,791
THE EXPONENTIAL COMPLEXITY

897
00:31:35,791 --> 00:31:38,327
ACROSS EACH DATA MODALITY AND

898
00:31:38,327 --> 00:31:40,296
EACH LAYER OF INTERPRETATION, IT

899
00:31:40,296 --> 00:31:44,133
TURNS OUT THAT PROTEOMISTS,

900
00:31:44,133 --> 00:31:47,203
DON'T TYPICALLY STUDY GENOMES,

901
00:31:47,203 --> 00:31:49,705
AND GENOMISTS DON'T TYPICALLY

902
00:31:49,705 --> 00:31:51,073
STUDY PROTEOMES.

903
00:31:51,073 --> 00:31:55,744
EVEN IN GENOMICS SPACE PEOPLE

904
00:31:55,744 --> 00:31:58,214
STUDY RNASEQ VERSUS OTHER DATA

905
00:31:58,214 --> 00:31:59,014
MODALITIES AND HISTORICALLY

906
00:31:59,014 --> 00:31:59,982
THAT'S LED TO PLATFOR THE

907
00:31:59,982 --> 00:32:03,119
PURPOSES THAT ARE DATA MODALITY

908
00:32:03,119 --> 00:32:03,786
SPECIFIC.

909
00:32:03,786 --> 00:32:05,621
PREVENTING MULTIMODAL ANALYSIS

910
00:32:05,621 --> 00:32:08,924
FROM FULLY GETTING TO A WORK

911
00:32:08,924 --> 00:32:09,125
SPACE.

912
00:32:09,125 --> 00:32:11,393
EVEN WORSE IS WHEN YOU ADD THE

913
00:32:11,393 --> 00:32:12,661
DIVERSITY OF CLINICAL DATA AND

914
00:32:12,661 --> 00:32:13,729
EVEN WORSE IT TURNS OUT THERE

915
00:32:13,729 --> 00:32:18,100
ARE NOT A LOT OF NEUROSURGEONS

916
00:32:18,100 --> 00:32:20,169
WHO SPENT 17 YEARS TO BECOME A

917
00:32:20,169 --> 00:32:21,470
NURSE OR WHO ALSO SPENT

918
00:32:21,470 --> 00:32:24,540
ADDITIONAL YEARS TO BECOME A

919
00:32:24,540 --> 00:32:25,641
DIOINFORMATICIAN, SO THEY SPEAK

920
00:32:25,641 --> 00:32:26,575
COMPLETELY DIFFERENT LANGUAGES

921
00:32:26,575 --> 00:32:27,643
FROM THE CLENICAL END PUCTURE

922
00:32:27,643 --> 00:32:28,944
YOU'RE TRYING TO HELP AND THE

923
00:32:28,944 --> 00:32:31,213
DATA LANDSCAPE AND THEY ASK

924
00:32:31,213 --> 00:32:32,414
QUESTIONS VERY DIFFERENTLY, IT'S

925
00:32:32,414 --> 00:32:34,717
VERY CHALLENGING TO CREATE A

926
00:32:34,717 --> 00:32:36,018
FARM WORK THAT'S BOTH POINT AND

927
00:32:36,018 --> 00:32:39,522
CLICK FOR SOMEONE WHO'S NOT A

928
00:32:39,522 --> 00:32:40,456
DATA SCIENTIST AND, RIGHT,

929
00:32:40,456 --> 00:32:45,594
COMMAND LEAN AND USER INTERFACE

930
00:32:45,594 --> 00:32:46,262
FRIENDLY FOR BIOINFORMATICIANS.

931
00:32:46,262 --> 00:32:48,631
THIS IS STILL AN ONGOING PROCESS

932
00:32:48,631 --> 00:32:49,632
FOR US.

933
00:32:49,632 --> 00:32:53,169
LET ME GIVE YOU A COUPLE MORE

934
00:32:53,169 --> 00:32:55,137
ENDING SLIDES AS ADDITIONAL

935
00:32:55,137 --> 00:32:56,705
CONTEXT OF WHERE WE'RE TRYING TO

936
00:32:56,705 --> 00:33:00,676
HEAD. 

937
00:33:00,676 --> 00:33:02,745
KIDS FIRST BEGAN WITH WITH

938
00:33:02,745 --> 00:33:05,514
COHORTS THAT HAD BEEN CREATED BY

939
00:33:05,514 --> 00:33:07,283
VERY LONGS, AND THE GOAL WAS TO

940
00:33:07,283 --> 00:33:09,285
CREATE A SINGLE POINT IN TIME

941
00:33:09,285 --> 00:33:10,886
OMIC DATABASE THAT'S LINKED TO

942
00:33:10,886 --> 00:33:12,922
THE EXISTING PHENOTYPES.

943
00:33:12,922 --> 00:33:16,325
IN REALITY, RIGHT, PHENOTYPES

944
00:33:16,325 --> 00:33:16,992
CHANGE ACROSS TIME.

945
00:33:16,992 --> 00:33:19,762
AND SO WE MIGHT HAVE GOTTEN A

946
00:33:19,762 --> 00:33:22,731
SNAPSHOT OF THAT PATIENT OF

947
00:33:22,731 --> 00:33:26,268
WHATEVER TIME THEY WERE,

948
00:33:26,268 --> 00:33:27,803
COLLECTED THE SESMLE AND

949
00:33:27,803 --> 00:33:29,872
ADJUDICATE FOR THIS PURPOSE BUT

950
00:33:29,872 --> 00:33:31,173
INVARIABLILY THE MINUTE SOMEONE

951
00:33:31,173 --> 00:33:32,141
HAS A FINDING, THE NEXT QUESTION

952
00:33:32,141 --> 00:33:34,543
THEY'RE GOING TO ASK IS WELL,

953
00:33:34,543 --> 00:33:35,244
WHAT HAPPENED INCOME ACCIDENT

954
00:33:35,244 --> 00:33:36,345
WHAT WERE THEY TREATED WITH,

955
00:33:36,345 --> 00:33:38,781
WHAT WERE THE OUTCOMES AND IT

956
00:33:38,781 --> 00:33:40,282
URNS OUT THESE COMMUNITIES ALSO

957
00:33:40,282 --> 00:33:41,483
ASK QUESTIONS IN VERY DIFFERENT

958
00:33:41,483 --> 00:33:45,721
WAYS, RIGHT IN THE PEOPLE WHO

959
00:33:45,721 --> 00:33:46,322
ARE CLINICAL INFORMATTISTICS,

960
00:33:46,322 --> 00:33:48,991
WHOSE BREAD AND BUTTER RIGHT, IS

961
00:33:48,991 --> 00:33:50,059
COLLECTING CLINICAL DATA FROM

962
00:33:50,059 --> 00:33:51,694
THE HEALTH RECORS AND CREATING

963
00:33:51,694 --> 00:33:52,895
THIS FRAMEWORK, THEY CREATE

964
00:33:52,895 --> 00:33:55,965
INFRASTRUCTURES THAT ARE

965
00:33:55,965 --> 00:33:57,733
TYPICALLY SEGREGATED FROM

966
00:33:57,733 --> 00:33:59,368
MOLECULAR DATA SETS, INTEGRATING

967
00:33:59,368 --> 00:34:01,136
THOSE INTO A COMMON CONTEXT IS

968
00:34:01,136 --> 00:34:02,638
STILL A NEW ENDEAVOR FOR MOST OF

969
00:34:02,638 --> 00:34:04,740
THE SCIENCE BECAUSE A GENOME

970
00:34:04,740 --> 00:34:06,709
CYSTS OF DATA AS POINT IF TIME,

971
00:34:06,709 --> 00:34:08,010
YOU ONLY HAVE 1 GENOME, YOU

972
00:34:08,010 --> 00:34:10,446
MIGHT GET LUCK EXPE HAVE 2

973
00:34:10,446 --> 00:34:11,614
SAMPLES COLLECTED IN TIME IF

974
00:34:11,614 --> 00:34:14,250
THERE WAS A RECURRENCE, WE MIGHT

975
00:34:14,250 --> 00:34:16,919
GET LUCKIER IF WE HAD A LIQUID

976
00:34:16,919 --> 00:34:18,554
DAILY BASIS THEA BIOPSY BUT IT'S

977
00:34:18,554 --> 00:34:20,055
NOT A TREME LIKE HEALTHCARE IS

978
00:34:20,055 --> 00:34:21,924
IN THE CONTEXT BUT THE MINUTE WE

979
00:34:21,924 --> 00:34:23,425
FIND ANYTHING, THE ONCOLOGIST

980
00:34:23,425 --> 00:34:24,927
ASKS WHAT WERE THEY TREATED

981
00:34:24,927 --> 00:34:26,262
WITH, FOR HOW LONG WERE THEY

982
00:34:26,262 --> 00:34:27,763
TREATED TOGETHER WITH THOSE

983
00:34:27,763 --> 00:34:28,597
SAMPLES SO WE'RE STARTING TO

984
00:34:28,597 --> 00:34:30,499
THINK ABOUT HOW TO CREATE THESE

985
00:34:30,499 --> 00:34:32,201
VIEWS, SO THIS IS A VIEW OF A

986
00:34:32,201 --> 00:34:35,571
PATIENT WHERE YOU'RE ANNOTATING

987
00:34:35,571 --> 00:34:36,405
SAMPLE COLLECTIONS ACROSS TIME

988
00:34:36,405 --> 00:34:38,140
BECAUSE THE PATIENT HAS

989
00:34:38,140 --> 00:34:39,208
RECURRENCE, WHICH DRUGS THEY

990
00:34:39,208 --> 00:34:41,176
WERE RECEIVING BECAUSE YOU

991
00:34:41,176 --> 00:34:41,910
SUSPECTED DRUGS INTERSECT WITH

992
00:34:41,910 --> 00:34:47,416
THE BIOLOGY OF THE TUMOR AND

993
00:34:47,416 --> 00:34:47,650
PATIENT.

994
00:34:47,650 --> 00:34:50,853
AND OTHER ENCOUNTER EVENTS LIKE

995
00:34:50,853 --> 00:34:51,553
IMAGES, MRIs OR PATHOLOGY

996
00:34:51,553 --> 00:34:54,556
EVENTS AND YOU CAN SEE THAT THE

997
00:34:54,556 --> 00:34:56,058
DATA GETS MORE COMPLICATED RIGHT

998
00:34:56,058 --> 00:34:57,059
HERE, EACH OF THESE NUMBERS ON

999
00:34:57,059 --> 00:34:58,394
THE LEFT IS A SAMPLE AND IT

1000
00:34:58,394 --> 00:35:06,402
TURNS OUT THAT THE TUMOR CHANGES

1001
00:35:06,402 --> 00:35:08,470
ACROSS TIME YOU ONLY GET THE

1002
00:35:08,470 --> 00:35:11,507
MUTATION AND THE SAMPLE DOESN'T

1003
00:35:11,507 --> 00:35:13,409
EXIST ON TABLE 1, 2, OR 3, AND

1004
00:35:13,409 --> 00:35:15,611
WHAT DO YOU DO WITH THAT, MOST

1005
00:35:15,611 --> 00:35:17,913
CLINICAL PRACTICES DON'T HAVE AN

1006
00:35:17,913 --> 00:35:20,049
ANSWER FOR THAT CAN THAT'S THE

1007
00:35:20,049 --> 00:35:21,817
OTHER CHALLENGE.

1008
00:35:21,817 --> 00:35:25,120
OUR CAPACITY TO GENERATE AND

1009
00:35:25,120 --> 00:35:26,755
INTERPRET DATA HAS OUT STRIPPED

1010
00:35:26,755 --> 00:35:27,856
THE CLINICAL CAPACITY TO SAY IF

1011
00:35:27,856 --> 00:35:30,693
I HAVE THIS, I DO THAT.

1012
00:35:30,693 --> 00:35:32,528
HOSPITAL SYSTEMS BY AND LARNL

1013
00:35:32,528 --> 00:35:35,030
ARE BUILT AS A BINARY FRAMEWORK,

1014
00:35:35,030 --> 00:35:36,198
YOU'RE POSITIVE FOR SOMETHING,

1015
00:35:36,198 --> 00:35:37,299
YOU'RE NEGATIVE FOR SOMETHING,

1016
00:35:37,299 --> 00:35:40,002
IF THIS OCCURS, YOU GET THIS.

1017
00:35:40,002 --> 00:35:40,803
SUDDENLY BIOMEDICAL HEALTH AND

1018
00:35:40,803 --> 00:35:42,805
GENERATING DAILY BASIS THEA

1019
00:35:42,805 --> 00:35:44,440
THAT'S NOT BINARY IN THAT

1020
00:35:44,440 --> 00:35:49,611
CONTEXT, AND THIS IS WHAT WHERE

1021
00:35:49,611 --> 00:35:50,346
PRECISION MEDICINE THRIVES.

1022
00:35:50,346 --> 00:35:52,381
I HAVE NOT YET BEEN TO A SINGLE

1023
00:35:52,381 --> 00:35:58,620
HOSPITAL THAT CAN ASK THE

1024
00:35:58,620 --> 00:35:59,688
FOLLOWING QUESTION:  LET'S TAKE

1025
00:35:59,688 --> 00:36:01,323
BRAIN TUMORS AS A CONTEXT.

1026
00:36:01,323 --> 00:36:03,058
SHOW ME ALL BRAIN TUMORS I HAVE

1027
00:36:03,058 --> 00:36:04,593
TREATED THROUGH MY EPIC

1028
00:36:04,593 --> 00:36:06,195
INTERFACE THAT LOOK LIKE THIS

1029
00:36:06,195 --> 00:36:06,562
PATIENT?

1030
00:36:06,562 --> 00:36:08,197
AND LOOK LIKE THIS PATIENT COULD

1031
00:36:08,197 --> 00:36:09,865
BE THEIR MRI LOOKS THE SAME,

1032
00:36:09,865 --> 00:36:11,433
OUTCOME WAS THE SAME, MOLECULAR

1033
00:36:11,433 --> 00:36:14,403
DATA SET WAS THE SAME, THIS IS

1034
00:36:14,403 --> 00:36:18,006
THE KEY CHALLENGE THAT PRECISION

1035
00:36:18,006 --> 00:36:18,674
MEDICINE'S TRANALATION REQUIRES

1036
00:36:18,674 --> 00:36:24,713
INFRANCIS 

1037
00:36:24,713 --> 00:36:25,848
IN--INFRASTRUCTURE THAT'S

1038
00:36:25,848 --> 00:36:26,882
COMPUTATIONALLY LINKED.

1039
00:36:26,882 --> 00:36:29,118
RIGHT NOW IT'S OPERATIONALLY

1040
00:36:29,118 --> 00:36:30,953
DRIVEN, NOT ANALYTICALLY EMPLOY

1041
00:36:30,953 --> 00:36:32,287
THE ANALYSIS HAPPENS IN THE

1042
00:36:32,287 --> 00:36:33,522
DOCTOR'S HEAD BASED ON WHAT THEY

1043
00:36:33,522 --> 00:36:36,492
KNOW, REMEMBER AND EXPERIENCE.

1044
00:36:36,492 --> 00:36:37,860
PRECISION MEDICINE REQUIRES THAT

1045
00:36:37,860 --> 00:36:40,295
NEXT LAYER OF INTERACTIONS

1046
00:36:40,295 --> 00:36:41,163
BETWEEN THAT PATIENT'S DATA

1047
00:36:41,163 --> 00:36:43,232
WHICH SUDDEN LOAMACYY IS MORE

1048
00:36:43,232 --> 00:36:46,135
COMPLEX, PART OF IT'S NOT

1049
00:36:46,135 --> 00:36:47,169
INTERPRETTAABLE BUT MIGHT BE

1050
00:36:47,169 --> 00:36:47,936
TOMORROW WHEN THE NEXT PATIENT

1051
00:36:47,936 --> 00:36:51,140
COMES ALONG AND LOOKS LIKE THAT

1052
00:36:51,140 --> 00:36:52,808
PATIENT, YOU HAVE THE FRAMEWORK

1053
00:36:52,808 --> 00:36:54,410
OF ANALYSIS AROUND PATIENTS SO

1054
00:36:54,410 --> 00:36:55,310
THAT CLINICIANS CAN INTERPRET

1055
00:36:55,310 --> 00:36:59,148
THEM IN THAT SETTING.

1056
00:36:59,148 --> 00:37:00,516
BUT THAT'S AN EXCITING ENDEAVOR

1057
00:37:00,516 --> 00:37:02,317
TO THINK ABOUT THEPABILITY OF

1058
00:37:02,317 --> 00:37:05,320
LARGE SCALE DATA SETS AND

1059
00:37:05,320 --> 00:37:06,422
INFRASTRUCTURE CREATED FOR

1060
00:37:06,422 --> 00:37:07,055
RESEARCH BECOME PROXIMAL TO

1061
00:37:07,055 --> 00:37:07,256
CARE.

1062
00:37:07,256 --> 00:37:09,057
AND I THINK THAT'S 1 OF THE

1063
00:37:09,057 --> 00:37:10,292
HARDEST LESSONS I LEARNED.

1064
00:37:10,292 --> 00:37:16,698
IT TURNS OUT THAT IF YOU ASK ANY

1065
00:37:16,698 --> 00:37:18,534
PAIBT ON OUR CLINICAL TRIALS OR

1066
00:37:18,534 --> 00:37:20,769
FOR WHICH YOU COLLECT SAMPLES,

1067
00:37:20,769 --> 00:37:21,470
THEY'RE NOT DIFFERENTIATING

1068
00:37:21,470 --> 00:37:24,239
BETWEEN TUMOR RESEARCH AND CARE,

1069
00:37:24,239 --> 00:37:24,440
RIGHT?

1070
00:37:24,440 --> 00:37:27,476
A MOTHER WHO'S CHILD HAS A BRAIN

1071
00:37:27,476 --> 00:37:28,544
TUMOR, RIGHT, THE CONTRACT SHE

1072
00:37:28,544 --> 00:37:29,778
HAS WITH US AS SCIENTISTS IS,

1073
00:37:29,778 --> 00:37:32,448
YOU ARE DOING EVERYTHING THAT'S

1074
00:37:32,448 --> 00:37:37,453
POSSIBLE TO ADVANCE THE

1075
00:37:37,453 --> 00:37:38,887
POTENTIAL FOR NEW THERAPY, SO

1076
00:37:38,887 --> 00:37:40,155
SUDDENLY YOU GET THIS

1077
00:37:40,155 --> 00:37:42,024
REQUIREMENT FOR RESEARCH TO BE

1078
00:37:42,024 --> 00:37:43,725
EXTREMELY CLOSE AND PROXIMAL TO

1079
00:37:43,725 --> 00:37:46,628
CARE IN THE ABSENCE OF

1080
00:37:46,628 --> 00:37:47,196
POTENTIALLY ESTABLISHED

1081
00:37:47,196 --> 00:37:49,398
STANDARDS OF CARE, RIGHT FOR

1082
00:37:49,398 --> 00:37:50,699
MANY DISEASES, YOU DON'T HAVE A

1083
00:37:50,699 --> 00:37:53,101
STANDARD OF CARE, WE HAVE A

1084
00:37:53,101 --> 00:37:54,970
THERAPEUTIC OFF THE SHELF MENU.

1085
00:37:54,970 --> 00:37:56,839
EMPOWERING THAT IS WHAT PARENTS

1086
00:37:56,839 --> 00:37:57,806
AND PATIENTS WANT, THAT'S WHAT

1087
00:37:57,806 --> 00:38:01,043
WE HAVE TO BUILD ON BEHALF OF

1088
00:38:01,043 --> 00:38:01,677
THESE RESEARCH FRAMEWORKS, WHILE

1089
00:38:01,677 --> 00:38:12,187
AT THE SAME TIME WE'RE DRIVING

1090
00:38:13,589 --> 00:38:14,323
RESEARCH.

1091
00:38:14,323 --> 00:38:17,926
THE OTHER INCREDIBLY INFORMATIVE

1092
00:38:17,926 --> 00:38:20,863
PART OF MY STUDIES WAS THAT I

1093
00:38:20,863 --> 00:38:22,364
WILL HAVE IMAGES, FEATURES

1094
00:38:22,364 --> 00:38:24,666
ACCIDENT EACH COMMUNITY THINKS

1095
00:38:24,666 --> 00:38:25,834
ABOUT DATA DIFFERENTLY, HOW IT'S

1096
00:38:25,834 --> 00:38:26,502
STRUCTURED AND THE INFORMATION

1097
00:38:26,502 --> 00:38:28,337
THAT GOES INTO IT, I THOUGHT IT

1098
00:38:28,337 --> 00:38:29,304
WAS WORTH WHILE ESPECIALLY HERE

1099
00:38:29,304 --> 00:38:31,373
TO BRING A LAYER THAT'S ALMOST

1100
00:38:31,373 --> 00:38:36,144
ALWAYS ABSENT FROM THE DATA SETS

1101
00:38:36,144 --> 00:38:37,012
WE GET.

1102
00:38:37,012 --> 00:38:39,915
WHEN A RADIOLOGIST LOOKS AT AN

1103
00:38:39,915 --> 00:38:42,985
MRI OR A HISTOLOGIST LOOKS AT A

1104
00:38:42,985 --> 00:38:45,621
HISTOLOGY SLIDE, THEY BECOME

1105
00:38:45,621 --> 00:38:45,954
STORY TELLERS.

1106
00:38:45,954 --> 00:38:49,091
THEY WRITE THESE VERY LONG

1107
00:38:49,091 --> 00:38:49,391
NARRATIVES.

1108
00:38:49,391 --> 00:38:49,591
RIGHT?

1109
00:38:49,591 --> 00:38:50,759
WHEN AN ONCOLOGIST WRITES A PLAN

1110
00:38:50,759 --> 00:38:52,294
FOR A PEASHT'S CARE, THEY WRITE

1111
00:38:52,294 --> 00:39:00,536
A STORY FOR THAT PATIENT.

1112
00:39:00,536 --> 00:39:01,904
IT'S EMBEDDED IN THE CARE IS

1113
00:39:01,904 --> 00:39:04,239
ABSENT FOR MOST OF OUR DATA, MY

1114
00:39:04,239 --> 00:39:05,307
COORDINATOR WILL LOOK AT THIS,

1115
00:39:05,307 --> 00:39:07,576
PICK UP A COUPLE OF WORDS AND

1116
00:39:07,576 --> 00:39:10,479
PUT THEM INTO MY DATABASE THAT'S

1117
00:39:10,479 --> 00:39:14,049
MISSING THIS FROM THE DATA LET

1118
00:39:14,049 --> 00:39:21,690
ALONE WHEN WE FIRST STARTED

1119
00:39:21,690 --> 00:39:23,191
TRYING TO TAKE AND PUT IT IN THE

1120
00:39:23,191 --> 00:39:25,460
SAME PLACE FOR THE GENOMICS

1121
00:39:25,460 --> 00:39:26,662
DATA, NO RADIOLOGIST TOUCHED

1122
00:39:26,662 --> 00:39:27,095
THEM.

1123
00:39:27,095 --> 00:39:28,830
IT TURNS OUT THAT JUST EACH THE

1124
00:39:28,830 --> 00:39:31,166
WAY THE FILES ARE STRUCTURED,

1125
00:39:31,166 --> 00:39:33,168
HOW THEY'RE COMBINED,

1126
00:39:33,168 --> 00:39:34,836
RADIOLOGIST EXPECTS A SERIES OF

1127
00:39:34,836 --> 00:39:36,004
SESSIONS RIGHT WHICH SCAN DID

1128
00:39:36,004 --> 00:39:39,875
THEY GET ALL AT 1 TIME SO EACH

1129
00:39:39,875 --> 00:39:40,809
PATIENT FOR A SINGLE EXPERIMENT

1130
00:39:40,809 --> 00:39:49,785
MIGHT HAVE HUNDREDS OF SESSIONS

1131
00:39:49,785 --> 00:39:52,554
FILES A GENOMISTS XEBS TO SEE 2

1132
00:39:52,554 --> 00:39:54,656
OR 3.

1133
00:39:54,656 --> 00:39:56,158
A DENATIONAL LIBRARY OF MEDICINE

1134
00:39:56,158 --> 00:39:57,492
CYST WORKS ON THE FILE AND HOW

1135
00:39:57,492 --> 00:39:58,560
THEY'RE AVAILABLE FOR COMMUNITY

1136
00:39:58,560 --> 00:40:00,128
AND REQUIRES A COMMON SET OF

1137
00:40:00,128 --> 00:40:00,896
INFRASTRUCTURES TO WORK TOGETHER

1138
00:40:00,896 --> 00:40:05,400
AND SO WE STARTED CATERING TO

1139
00:40:05,400 --> 00:40:07,536
THAT AND SAYING WHICH PLATFORMS

1140
00:40:07,536 --> 00:40:08,937
HAVE RADIOLOGISTS HAVE THEM ON

1141
00:40:08,937 --> 00:40:10,606
THEM, LET'S BRENG THEM IN, BUT

1142
00:40:10,606 --> 00:40:11,974
WHETHER YOU LEARN THAT LESSON IN

1143
00:40:11,974 --> 00:40:13,842
THE PAST, WE DON'T WANT

1144
00:40:13,842 --> 00:40:14,443
THEERATEIOLOGYIST WORKS IN 1

1145
00:40:14,443 --> 00:40:16,078
PLACE AND THE GENTLEMEN WORKS IN

1146
00:40:16,078 --> 00:40:18,013
ANOTHER, THEY WILL MAKE THEIR

1147
00:40:18,013 --> 00:40:18,947
SEPARATE DISCOVERIES AND NEVER

1148
00:40:18,947 --> 00:40:19,147
TALK.

1149
00:40:19,147 --> 00:40:22,384
WE HAVE TO MAKE THE PLATFORMS

1150
00:40:22,384 --> 00:40:23,585
ACTUALLY HAVE NOTIONS OF

1151
00:40:23,585 --> 00:40:31,526
COMBINED PROGECS IN A COMMON

1152
00:40:31,526 --> 00:40:34,396
PLACE, CREATE WORK FLOWS, CREATE

1153
00:40:34,396 --> 00:40:37,399
GENERATED SETTIC DATA AND

1154
00:40:37,399 --> 00:40:38,533
ROUTING THAT ENTIRE DATA TO

1155
00:40:38,533 --> 00:40:46,375
CREATE THE SHARED PROJECT BUT

1156
00:40:46,375 --> 00:40:48,143
THE RESULTS CAN BE INTEGRATED

1157
00:40:48,143 --> 00:40:52,614
FOR ANALYSIS IN A COMMON WORK

1158
00:40:52,614 --> 00:40:52,814
SPACE.

1159
00:40:52,814 --> 00:40:56,184
I THOUGHT GENOMICS AND DATA

1160
00:40:56,184 --> 00:40:57,919
ANALYTICS WAS HARD, IT WASN'T

1161
00:40:57,919 --> 00:41:00,222
UNTIL WE TRIED EXPANDING OUR

1162
00:41:00,222 --> 00:41:01,657
FOOTPRINT ARK ROUND CLINICAL

1163
00:41:01,657 --> 00:41:04,326
DATA THAT WE REALIZED HOW HARD

1164
00:41:04,326 --> 00:41:06,628
CLINICAL VARIABLES ACTUALLY ARE,

1165
00:41:06,628 --> 00:41:08,463
I MENTIONED OUR GOAL WAS TO SAY

1166
00:41:08,463 --> 00:41:10,666
RECOGNIZING THE CLINICAL DATA IS

1167
00:41:10,666 --> 00:41:12,067
CONTINUOUS, A BRAIN TUMOR

1168
00:41:12,067 --> 00:41:21,510
PATIENT MIGHT HAVE SURGERY TWICE

1169
00:41:21,510 --> 00:41:22,244
AND CREATE THE FILE.

1170
00:41:22,244 --> 00:41:24,913
HOW DO WE CREATE THE REAL

1171
00:41:24,913 --> 00:41:26,515
FRAMEWORK OF DATA FLOW.

1172
00:41:26,515 --> 00:41:27,949
UP UNTIL NOW MOST PEOPLE DO IT

1173
00:41:27,949 --> 00:41:29,217
IN A HUMAN WAY.

1174
00:41:29,217 --> 00:41:31,520
WHAT I MEAN BY THAT IS LITERALLY

1175
00:41:31,520 --> 00:41:33,488
HUMAN, LOOKING AT THE EPIC OR

1176
00:41:33,488 --> 00:41:34,890
ELECTRONIC HELT RECORANDS

1177
00:41:34,890 --> 00:41:36,725
COPYING AND PASTING OR WRITING

1178
00:41:36,725 --> 00:41:38,660
INFORMATION THAT THEY SEE THERE

1179
00:41:38,660 --> 00:41:40,762
AND TURNINGS OUT HUMANS ARE

1180
00:41:40,762 --> 00:41:47,903
PRETTY CRAPY AT THAT AT SCALE,

1181
00:41:47,903 --> 00:41:48,403
HUMANS MAKE MISTAKES.

1182
00:41:48,403 --> 00:41:50,238
THE ONLY WAY TO COMBAT THAT IS

1183
00:41:50,238 --> 00:41:55,544
TO HAVE RECOLLECT HUMANS CHECK

1184
00:41:55,544 --> 00:41:57,179
THEIR ERRORS AND COMBAT THAT.

1185
00:41:57,179 --> 00:41:59,214
OVER THE PAST 10 YEARS

1186
00:41:59,214 --> 00:42:02,350
ESSENTIALLY BETWEEN THE

1187
00:42:02,350 --> 00:42:04,186
HIGH-TECH ACT OF 2009 AND UNDER

1188
00:42:04,186 --> 00:42:05,921
THE OBAMA ADMINISTRATION AND

1189
00:42:05,921 --> 00:42:07,456
LAST YEAR WITH THE NONBLOCKING

1190
00:42:07,456 --> 00:42:10,092
RULE OF THE NATIONAL OFFICE OF

1191
00:42:10,092 --> 00:42:11,727
THE CONTROLLER COORDINATOR

1192
00:42:11,727 --> 00:42:13,462
THERE'S BEEN A TRANSFORMATION IN

1193
00:42:13,462 --> 00:42:15,097
THINKING ABOUT HEALTHCARE DATA

1194
00:42:15,097 --> 00:42:17,265
IS STRUCTURED, MANY OF YOU MAY

1195
00:42:17,265 --> 00:42:18,667
HAVE YOUR IPHONES CONNEBBED TO

1196
00:42:18,667 --> 00:42:26,208
YOUR MY HEALTH APP, THAT'S

1197
00:42:26,208 --> 00:42:28,944
REQUIRED FOR THOSE STATEMENTS

1198
00:42:28,944 --> 00:42:32,280
AND DATA TO COME OUT IN AN

1199
00:42:32,280 --> 00:42:32,714
OVERQUAL FBIED WAY.

1200
00:42:32,714 --> 00:42:33,849
IT'S OVERSELLING IT, IT'S NOT

1201
00:42:33,849 --> 00:42:34,783
UNIFIED BUT IT'S AVAILABLE TO

1202
00:42:34,783 --> 00:42:38,553
PEOPLE WHO MAKE TOOLS THAT CAN

1203
00:42:38,553 --> 00:42:39,821
UNDERSTAND WHAT'S COMING OUT OF

1204
00:42:39,821 --> 00:42:42,491
THE ELECTRONIC HEALTH RECORD OR

1205
00:42:42,491 --> 00:42:47,362
THE EXCHANGE FORMAT WHICH IS

1206
00:42:47,362 --> 00:42:49,531
WHAT FHIR STANDS FOR.

1207
00:42:49,531 --> 00:42:51,099
SO WE'VE BEEN PILOTING THIS OVER

1208
00:42:51,099 --> 00:42:52,801
THE LAST 6 MONTHS THEN, SO CHOP

1209
00:42:52,801 --> 00:42:54,836
WILL GO TO SEATTLE AND UCSF,

1210
00:42:54,836 --> 00:42:57,439
WHAT DOES IT TAKE FOR DATA TO

1211
00:42:57,439 --> 00:43:00,842
JUST STREAM FROM THE ELECTRONIC

1212
00:43:00,842 --> 00:43:01,777
HEALTH TREATMENT AND THE

1213
00:43:01,777 --> 00:43:03,011
GOVERNMENT SAYS YOU HAVE TO DO

1214
00:43:03,011 --> 00:43:09,651
THIS AND IT TURNS OUT IT DOESN'T

1215
00:43:09,651 --> 00:43:11,386
REALLY HAPPEN FULLY WE HAVE TO

1216
00:43:11,386 --> 00:43:12,954
GO THROUGH HAYERS OF IMP

1217
00:43:12,954 --> 00:43:16,158
LEMMATION, ADDITIONAL TOOLS BUT

1218
00:43:16,158 --> 00:43:18,160
NOW WE CAN, WE'VE PROVEN WE CAN

1219
00:43:18,160 --> 00:43:19,761
CREATE FRAMEWORK FOR REALTIME

1220
00:43:19,761 --> 00:43:22,664
DATA EXCHANGE, THE PATIENT SHOWS

1221
00:43:22,664 --> 00:43:24,499
UP, THEY'RE CONSENTED, DATA

1222
00:43:24,499 --> 00:43:26,968
FLOWS, INSTEAD OF PULLING DATA,

1223
00:43:26,968 --> 00:43:29,538
DATA GETS PUSHED, GETS PUSHED ON

1224
00:43:29,538 --> 00:43:34,176
BEHALF OF PATES  PATES--PATIENTS

1225
00:43:34,176 --> 00:43:35,043
CONSENTED AND WANT THAT

1226
00:43:35,043 --> 00:43:36,077
INTERNATIONAL CLASSIFICATION

1227
00:43:36,077 --> 00:43:36,344
IMRAITED.

1228
00:43:36,344 --> 00:43:39,181
THE NEXT LAYER TO LEVERAGE THE

1229
00:43:39,181 --> 00:43:39,915
SAME INTEROPERABILITY FRAMEWORK

1230
00:43:39,915 --> 00:43:41,416
TO BRING DATA BACK IN, RIGHT?

1231
00:43:41,416 --> 00:43:43,218
, CAN YOU IMAGINE DATA GOING

1232
00:43:43,218 --> 00:43:44,352
OUT, ANALYZED, ANSWERING

1233
00:43:44,352 --> 00:43:46,988
QUESTIONS, WHAT THE OTHER PATES

1234
00:43:46,988 --> 00:43:48,056
AT CHOP OR ANYWHERE ELSE THAT

1235
00:43:48,056 --> 00:43:50,158
LOOK LIKE THOSE PATIENTS EMPLOY

1236
00:43:50,158 --> 00:43:51,993
THOSE MRIs, FLOWING INTO A

1237
00:43:51,993 --> 00:43:55,330
FRAMEWORK WHERE THE SYSTEM

1238
00:43:55,330 --> 00:43:55,797
MEASURES BIOMETRICALLY

1239
00:43:55,797 --> 00:43:58,300
AUTOMATICALLY, THE SIZE OF THE

1240
00:43:58,300 --> 00:43:59,267
TUMOR, THINGS THE HUMAN MAY NOT

1241
00:43:59,267 --> 00:44:01,036
HAVE SEEN AND THAT ANALYSIS THEN

1242
00:44:01,036 --> 00:44:08,743
FLOWS BACK THROUGH THAT SAME

1243
00:44:08,743 --> 00:44:10,011
PIPE BECAUSE PIPE IS

1244
00:44:10,011 --> 00:44:12,514
BI-DIRECTIONAL AND THE SAME GOES

1245
00:44:12,514 --> 00:44:14,349
THROUGH THOSE DIRECTIONS, WHEN

1246
00:44:14,349 --> 00:44:19,187
CHAT GPT KEAM UP, I BECAME A

1247
00:44:19,187 --> 00:44:20,055
CHATGPT FANATIC, NOT THE LEAST

1248
00:44:20,055 --> 00:44:21,857
OF WHICH BECAUSE IT COULD WRITE

1249
00:44:21,857 --> 00:44:24,125
THINGS IN WHATEVER FORMAT I

1250
00:44:24,125 --> 00:44:25,894
WANTED SHAKES SPEAR OR OTHER

1251
00:44:25,894 --> 00:44:28,396
WISE OR BECAUSE MY KID

1252
00:44:28,396 --> 00:44:29,931
STARTEDUING IT FOR MANY

1253
00:44:29,931 --> 00:44:31,099
TEENAGERS WERE USING IT FOR THAT

1254
00:44:31,099 --> 00:44:32,500
THEY SHOULDN'T HAVE BUT BECAUSE

1255
00:44:32,500 --> 00:44:39,274
I SAW THE POTENTIAL FOR 1 OF OUR

1256
00:44:39,274 --> 00:44:40,942
BIGGEST BARRIERS AND I MENTIONED

1257
00:44:40,942 --> 00:44:42,477
IT EARLY ON, AS I GO TO THE

1258
00:44:42,477 --> 00:44:44,346
PORTALS YOU HAVE TO KNOW WHICH

1259
00:44:44,346 --> 00:44:46,648
BUTTON TO CLICK ON TO FIGURE OUT

1260
00:44:46,648 --> 00:44:47,582
THAT SEARCH SPACE, IF YOU'VE

1261
00:44:47,582 --> 00:44:49,584
DONE IT A FEW TIMES AND YOU LOST

1262
00:44:49,584 --> 00:44:50,785
A VIDEO, YOU LEARN HOW TO DO

1263
00:44:50,785 --> 00:44:52,954
THAT BUT WHAT A CLINICIAN REALLY

1264
00:44:52,954 --> 00:45:00,195
WANTS TO DO IS ASK THE QUESTION,

1265
00:45:00,195 --> 00:45:00,629
RIGHT?

1266
00:45:00,629 --> 00:45:02,264
WE'VE HAD THIS MUTATION, THEY'LL

1267
00:45:02,264 --> 00:45:05,233
SAVE IT IN THE ORDER, THEY WANT

1268
00:45:05,233 --> 00:45:15,343
TO COMMUNICATE WITH THE DATA

1269
00:45:15,343 --> 00:45:17,579
CHATGPT IS TAKEN THAT FRAMEWORK

1270
00:45:17,579 --> 00:45:18,947
OR PREDICTABILITY, LAYERED THAT

1271
00:45:18,947 --> 00:45:22,284
STRUCTURE ON DATA AND AS LONG AS

1272
00:45:22,284 --> 00:45:25,353
THERE'S STRUCTURE, THE SYSTEM

1273
00:45:25,353 --> 00:45:27,656
UNDERSTANDS IN FACT IF ANY OF

1274
00:45:27,656 --> 00:45:29,124
YOU HAVE EVER QUERIES A

1275
00:45:29,124 --> 00:45:31,159
DATABASE, YOU WOULD HAVE TO USE

1276
00:45:31,159 --> 00:45:32,294
SOMETHING LIKE SEQUEL OR

1277
00:45:32,294 --> 00:45:33,728
SOMETHING COMPLEX WHERE YOU

1278
00:45:33,728 --> 00:45:34,863
TRANALATE YOUR HUMAN LANGUAGE

1279
00:45:34,863 --> 00:45:39,401
INTO COMPUTER LANGUAGE TO IRPT

1280
00:45:39,401 --> 00:45:41,469
ACT WITH IT.

1281
00:45:41,469 --> 00:45:43,638
WHAT THE GPT DID IS IT CAN DO

1282
00:45:43,638 --> 00:45:46,241
THAT FOR YOU, IT UNDERSTANDS

1283
00:45:46,241 --> 00:45:47,642
FHIR, IT UNDERSTANDS READING

1284
00:45:47,642 --> 00:45:48,610
[INDISCERNIBLE] ON FILES, IT CAN

1285
00:45:48,610 --> 00:45:51,413
DO THE FOLLOWING, CAN YOU ASK

1286
00:45:51,413 --> 00:45:52,914
THAT QUESTION, SHOW ME ALL

1287
00:45:52,914 --> 00:45:54,282
PATIENTS THAT ARE SIMILAR TO

1288
00:45:54,282 --> 00:45:55,951
THIS AND THEY'LL ASK BACK, DO

1289
00:45:55,951 --> 00:46:02,290
YOU MEAN BY MRI AND DO YOU MEAN

1290
00:46:02,290 --> 00:46:05,093
GENOMEICALLY, LET'S DO BOTH

1291
00:46:05,093 --> 00:46:13,935
IT'LL HAVE THAT INTERACTION WITH

1292
00:46:13,935 --> 00:46:15,704
YOU BAGSED ON THE COMMUNICATION,

1293
00:46:15,704 --> 00:46:17,772
THE LAYER BETWEEN A QUERY AND A

1294
00:46:17,772 --> 00:46:20,842
DATA SET, IS THE LAST BARRIER TO

1295
00:46:20,842 --> 00:46:23,278
ENTRY FOR DISCOVERY, RIGHT?

1296
00:46:23,278 --> 00:46:24,879
THAT'S THE PART, RIGHT THAT

1297
00:46:24,879 --> 00:46:29,584
WE'RE POSITIONING ALL THESE

1298
00:46:29,584 --> 00:46:31,653
RESOURCES FOR SO WE'RE DOING

1299
00:46:31,653 --> 00:46:33,154
THIS PILOT OF BRINGING THE DATA

1300
00:46:33,154 --> 00:46:34,356
OUT IN REALTIME BUT IT'S

1301
00:46:34,356 --> 00:46:38,326
ENTERING A PLACE WHERE A GPT

1302
00:46:38,326 --> 00:46:40,395
TRANSFORMER AND WE WILL PAIR

1303
00:46:40,395 --> 00:46:41,463
THIS, AND CAN DETERMINE

1304
00:46:41,463 --> 00:46:42,163
AUTOMATICALLY UNDERSTAND WHAT

1305
00:46:42,163 --> 00:46:43,598
DATA IS THERE AND WE WILL SEE IF

1306
00:46:43,598 --> 00:46:45,233
I CAN ASK A QUESTION OR YOU CAN

1307
00:46:45,233 --> 00:46:47,869
ASK A QUESTION, JUST ASKING THE

1308
00:46:47,869 --> 00:46:49,137
QUESTION, SO SUDDENLY THE

1309
00:46:49,137 --> 00:46:50,839
DASHBOARD OF ALL THESE BUTTONS

1310
00:46:50,839 --> 00:46:52,640
YOU HAVE TO CLIM, ALL THE

1311
00:46:52,640 --> 00:46:55,710
FACETTED SEARCH, MAYBE THEY GO

1312
00:46:55,710 --> 00:46:58,113
AWAY, OR MAYBE THEY GO TO THE

1313
00:46:58,113 --> 00:46:58,847
RECEIVING BACKGROUND AND YOU

1314
00:46:58,847 --> 00:47:00,181
JUST ASK YOUR QUESTION, HAVE YOU

1315
00:47:00,181 --> 00:47:03,518
A CONVERSATION WITH THE DATA.

1316
00:47:03,518 --> 00:47:04,953
I'M SURE MANY OF YOU HAVE HEARD

1317
00:47:04,953 --> 00:47:07,055
ABOUT THE DANGERS AND RISKS OF

1318
00:47:07,055 --> 00:47:09,691
THIS, I STARTED THIS HERE FOR MY

1319
00:47:09,691 --> 00:47:12,193
KID, MY KID HAS KNOWN I WORKED

1320
00:47:12,193 --> 00:47:14,529
FOR THE LAST 15 YEARS, HE NEVER

1321
00:47:14,529 --> 00:47:16,398
LOGGED ON TO ANY OF OUR PORTALS

1322
00:47:16,398 --> 00:47:17,599
EACH THOUGH I PROMISED HIM

1323
00:47:17,599 --> 00:47:20,802
THERE'S NO MATH ON IT, RIGHT?

1324
00:47:20,802 --> 00:47:24,005
YOU CAN IMAGINE THE CONVERSATION

1325
00:47:24,005 --> 00:47:24,839
EVEN MORE PERSONALIZED, RIGHT?

1326
00:47:24,839 --> 00:47:28,710
I CAN HAVE THE CHAT, LITERALLY A

1327
00:47:28,710 --> 00:47:30,812
CHAT VERSION CALLED GENZ-SPEAK

1328
00:47:30,812 --> 00:47:36,684
WHERE IT WILL TALK TO YOU IN

1329
00:47:36,684 --> 00:47:38,119
GEN-Z, MAYBE THAT WILL BE THE

1330
00:47:38,119 --> 00:47:39,988
NEXT BARRIER TO ACTUALLY GET A

1331
00:47:39,988 --> 00:47:42,090
TEENAGER TO LOG ON TO A PLATFORM

1332
00:47:42,090 --> 00:47:44,626
THAT'S OPEN, BUT THE PART THAT I

1333
00:47:44,626 --> 00:47:48,596
LOVE THE MOST IS THAT EVEN

1334
00:47:48,596 --> 00:47:51,966
THOUGH CHAT GPT OR OTHER CANS

1335
00:47:51,966 --> 00:47:52,801
HALLUCINATE BECAUSE ALL THEY'RE

1336
00:47:52,801 --> 00:47:54,169
DOING IS PREDIBTING WORDS WHAT

1337
00:47:54,169 --> 00:47:57,439
THEY CAN DO IS CONNECK TO THINGS

1338
00:47:57,439 --> 00:47:57,939
THAT DON'T HALLUCINATE.

1339
00:47:57,939 --> 00:48:01,810
SO CAN YOU TAKE A KNOWLEDGE

1340
00:48:01,810 --> 00:48:03,878
FRAMEWORK, A DATABASE AND ASK

1341
00:48:03,878 --> 00:48:06,147
THE QUESTION, NATURAL LANGUAGE

1342
00:48:06,147 --> 00:48:07,916
WISE, AND THE GPT TRANSFORMER

1343
00:48:07,916 --> 00:48:09,250
WILL UNDERSTAND WHAT YOU WANT TO

1344
00:48:09,250 --> 00:48:11,319
KNOW, WILL KNOW WHERE TO GO AND

1345
00:48:11,319 --> 00:48:14,322
IT WILL WRITE THE CODE TO GET IT

1346
00:48:14,322 --> 00:48:18,026
AND BRING IT BACK TO YOU. 

1347
00:48:18,026 --> 00:48:18,960
THAT IRPT ACTION BETWEEN

1348
00:48:18,960 --> 00:48:21,162
KNOWLEDGE OR ACTUALLY

1349
00:48:21,162 --> 00:48:23,431
STRUCTURED, FRAMED, VETTED AND

1350
00:48:23,431 --> 00:48:25,767
THE LAYER OF LANGUAGE, YOU CAN

1351
00:48:25,767 --> 00:48:28,069
COMMUNICATE WITH IT AND THE

1352
00:48:28,069 --> 00:48:28,870
TRANSFORMATIVE MOMENT, RIGHT,

1353
00:48:28,870 --> 00:48:35,043
FOR SCIENTISTSA THE LARGE.

1354
00:48:35,043 --> 00:48:36,511
TRULY IDEALIZES THE CONTEXT IN

1355
00:48:36,511 --> 00:48:38,179
WAYS I AM SUPER EXCITED ABOUT.

1356
00:48:38,179 --> 00:48:40,849
AND IN FACT, LEAK WHEN I SHOWED

1357
00:48:40,849 --> 00:48:42,050
PORTAL TODAY TO YOU, RIGHT,

1358
00:48:42,050 --> 00:48:45,687
THERE'S A PART OF ME THAT HURTS

1359
00:48:45,687 --> 00:48:47,255
BECAUSE I KNOW IT'S ALREADY NOT

1360
00:48:47,255 --> 00:48:48,389
RELEVANT, RIGHT IN BECAUSE THIS

1361
00:48:48,389 --> 00:48:56,931
IS THE NEXT WAVE OF INTERACTING

1362
00:48:56,931 --> 00:48:58,600
WITH DATA IT'S AN AMAZING PORTAL

1363
00:48:58,600 --> 00:49:01,202
AND I DON'T WANT TO SAY

1364
00:49:01,202 --> 00:49:02,403
OTHERWISE, BUILT BY AN AMAZING

1365
00:49:02,403 --> 00:49:05,507
TEAM BUT YOU CAN ALREADY SEE THE

1366
00:49:05,507 --> 00:49:07,575
DYNAMIC INTERACTION BETWEEN DATA

1367
00:49:07,575 --> 00:49:08,776
SOURCES, HOW THEY INTERCONNECT,

1368
00:49:08,776 --> 00:49:11,212
WHO ASKS THE QUESTIONS AND THEY

1369
00:49:11,212 --> 00:49:12,013
GET COMPLETELY TRANSFORM.

1370
00:49:12,013 --> 00:49:16,551
FOR ME THAT'S ENTIRELY AMAZING

1371
00:49:16,551 --> 00:49:18,553
EMPLOY AND IT FULFILLS A PHRASE

1372
00:49:18,553 --> 00:49:20,622
I TRY TO SAY IN ALL MY TALKS

1373
00:49:20,622 --> 00:49:24,159
WHICH IS PROMISE WE GIVE TO

1374
00:49:24,159 --> 00:49:24,559
PATIENT FAMILIES.

1375
00:49:24,559 --> 00:49:26,294
THE 21st CENTURY PROMISE IS

1376
00:49:26,294 --> 00:49:27,862
THAT IF YOU CAN MEASURE IT, YOU

1377
00:49:27,862 --> 00:49:29,464
CAN UNDERSTAND IT, IF YOU CAN

1378
00:49:29,464 --> 00:49:30,698
UNDERSTAND IT, WE CAN INTERVENE

1379
00:49:30,698 --> 00:49:33,268
WITH IT.

1380
00:49:33,268 --> 00:49:36,337
THAT'S THE PROMISE AND IF THAT'S

1381
00:49:36,337 --> 00:49:38,173
TRUE, THEN OUR JOB IS TO

1382
00:49:38,173 --> 00:49:39,274
ACCELERATE THAT PROCESS THRIE

1383
00:49:39,274 --> 00:49:40,241
THROUGH TECHNOLOGY, IF YOU TAKE

1384
00:49:40,241 --> 00:49:41,509
THAT AS FACT, RIGHT, YOU CAN

1385
00:49:41,509 --> 00:49:42,710
MEASURE IT, YOU UNDERSTAND IT,

1386
00:49:42,710 --> 00:49:46,481
THEN YOU CAN CHANGE IT, BUT

1387
00:49:46,481 --> 00:49:47,515
THAT'S THE TRUISM, THEN

1388
00:49:47,515 --> 00:49:49,284
EVERYTHING SHOULD ORIENT TOWARDS

1389
00:49:49,284 --> 00:49:50,351
ACCELERATING THE FRAMEWORK AND

1390
00:49:50,351 --> 00:49:52,187
THE TECHNOLOGY FRAMEWORK THAT

1391
00:49:52,187 --> 00:49:54,822
DATA SCIENCE BRINGS IS AT OUR

1392
00:49:54,822 --> 00:49:55,056
HANDS.

1393
00:49:55,056 --> 00:49:56,324
IT TURNS OUT WE WEREN'T THE

1394
00:49:56,324 --> 00:49:58,092
FIRST PEOPLE TO TRY TO DO THAT,

1395
00:49:58,092 --> 00:50:02,230
I WILL FINISH WITH THIS 1 SLIDE.

1396
00:50:02,230 --> 00:50:05,633
GROWING UP I WAS AN AVIATION

1397
00:50:05,633 --> 00:50:08,069
ENTHUSIAST SO I TOOK PILOT'S

1398
00:50:08,069 --> 00:50:09,837
LESSONS WHEN I WAS 12.

1399
00:50:09,837 --> 00:50:13,141
YOU WOULD SHOW UP THE AIRPORT,

1400
00:50:13,141 --> 00:50:14,409
YOU WOULD GET THE WEATHER

1401
00:50:14,409 --> 00:50:16,477
REPORT, YOU WOULDN'T GET THE

1402
00:50:16,477 --> 00:50:18,446
WEATHER REPORT FOR MY AIRPORT,

1403
00:50:18,446 --> 00:50:20,615
YOU WOULD GET THE WEATHER FOR

1404
00:50:20,615 --> 00:50:23,051
WHEN WHERE YOU'RE HEADING, THIS

1405
00:50:23,051 --> 00:50:24,319
WAS IN 1992, PREINTERNET, THERE

1406
00:50:24,319 --> 00:50:25,620
WAS A COMMUNICATION FRAMEWORK

1407
00:50:25,620 --> 00:50:27,689
FOR THE WEATHER, IT TURNS OUT

1408
00:50:27,689 --> 00:50:29,424
WEATHER IS A MULTIMODAL

1409
00:50:29,424 --> 00:50:31,092
FRAMEWORK, THERE'S THE SHAPE OF

1410
00:50:31,092 --> 00:50:34,195
THE LANDSCAPE, THE TEMPERATURE,

1411
00:50:34,195 --> 00:50:39,467
THE OCEAN, THE  GROUND HUMIDITY,

1412
00:50:39,467 --> 00:50:42,136
NUMBER OF WAYS TO MEASURE IT,

1413
00:50:42,136 --> 00:50:43,705
BALLOONS WHO GET SENT UP AND

1414
00:50:43,705 --> 00:50:46,941
DOWN 2 TIMES A DAY, AIRPLANES

1415
00:50:46,941 --> 00:50:48,376
FLYING INTO STORMS AND

1416
00:50:48,376 --> 00:50:50,245
COLLECTING DATA, THE NUMBER OF

1417
00:50:50,245 --> 00:50:52,213
IMAGES TAKEN AND INTEGRATE THE

1418
00:50:52,213 --> 00:50:53,348
WAVE LENGTH THE MULTIMODAL

1419
00:50:53,348 --> 00:50:55,283
FRAMEWORK BUT EVERY TIME A

1420
00:50:55,283 --> 00:50:58,419
HURRICANE COMES, RIGHT, WE SEE

1421
00:50:58,419 --> 00:51:01,089
THIS, WE SEE SEXER SENTIALLY

1422
00:51:01,089 --> 00:51:03,057
WHAT'S CALLED A SPAGHETTI PLOT,

1423
00:51:03,057 --> 00:51:05,360
CAN YOU SEE IT'S TIGHTLY

1424
00:51:05,360 --> 00:51:06,894
TOGETHER AT 2 OR 2 AND GETS

1425
00:51:06,894 --> 00:51:07,395
SPREAD APART.

1426
00:51:07,395 --> 00:51:09,464
WHY CAN'T WE DO THAT FOR

1427
00:51:09,464 --> 00:51:09,998
PATIENTS, RIGHT?

1428
00:51:09,998 --> 00:51:12,033
CAN WE CREATE A SPAGHETTI PLOT

1429
00:51:12,033 --> 00:51:12,533
FOR OUR PATIENTS?

1430
00:51:12,533 --> 00:51:14,669
I THINK WE CAN.

1431
00:51:14,669 --> 00:51:18,740
I THINK IT'S BEEN DONE BEFORE,

1432
00:51:18,740 --> 00:51:20,375
AND UNLIKE THE WEATHER, I THINK

1433
00:51:20,375 --> 00:51:21,909
WE CAN CHANGE IT SO THAT'S THE

1434
00:51:21,909 --> 00:51:24,178
VISION AND WE WILL SEE HOW THE

1435
00:51:24,178 --> 00:51:29,984
PANELISTS FEEL ABOUT THAT

1436
00:51:29,984 --> 00:51:30,285
VISION.

1437
00:51:30,285 --> 00:51:40,328
[ APPLAUSE ]

1438
00:51:40,328 --> 00:51:42,230
>> THANK YOU SO MUCH FOR
THAT

1439
00:51:42,230 --> 00:51:44,732
REALLY, REALLY WONDERFUL AND

1440
00:51:44,732 --> 00:51:45,233
THOUGHT-PROVOKING TALK.

1441
00:51:45,233 --> 00:51:47,101
SO NOW I WILL ASK THE PANELISTS

1442
00:51:47,101 --> 00:51:52,273
TO COME UP AND LEAD THE

1443
00:51:52,273 --> 00:51:55,543
DECUSHION, IT WILL BE LED BY OUR

1444
00:51:55,543 --> 00:51:57,378
CHIEF SCIENTIFIC OFFICER OF THE

1445
00:51:57,378 --> 00:52:01,582
ALL OF US PANEL AT THE NIH, WE

1446
00:52:01,582 --> 00:52:03,951
HAVE DR. FRAN CHESK O, WITH

1447
00:52:03,951 --> 00:52:05,987
NHGRI WHICH IS THE NATIONAL

1448
00:52:05,987 --> 00:52:08,456
HUMAN GENOME RESEARCH INSTITUTE

1449
00:52:08,456 --> 00:52:10,091
AND DR. JOSH LEVY IS THE

1450
00:52:10,091 --> 00:52:13,461
CLENICAL DIRECTOR FOR NIDCD, SO

1451
00:52:13,461 --> 00:52:14,896
DR. GINSBERG, PLEASE LEAD US

1452
00:52:14,896 --> 00:52:18,232
OFF.

1453
00:52:18,232 --> 00:52:18,533
NTHANK YOU.

1454
00:52:18,533 --> 00:52:18,800
THANK YOU.

1455
00:52:18,800 --> 00:52:26,774
THANK YOU VERY MUCH DR. RESNICK,

1456
00:52:26,774 --> 00:52:28,242
OR ADAM FOR AN INSPIRATIONAL

1457
00:52:28,242 --> 00:52:33,381
TALK, I WILL JUST SAVE SOMETHING

1458
00:52:33,381 --> 00:52:34,682
FOR A LATER DISCUSSION AFTER

1459
00:52:34,682 --> 00:52:37,719
THIS IS OVER IS THE CONVERGENCE

1460
00:52:37,719 --> 00:52:39,287
OF PHILOSOPHICAL INTENT OF THE

1461
00:52:39,287 --> 00:52:40,455
KIDS PLATFORM YOU BUILT AND ALL

1462
00:52:40,455 --> 00:52:41,656
OF US IS REMARKABLE AND WILL

1463
00:52:41,656 --> 00:52:44,092
PROBABLY HAVE A LOT TO LEARN

1464
00:52:44,092 --> 00:52:44,559
FROM EACH OTHER.

1465
00:52:44,559 --> 00:52:46,060
BUT LET ME TELL WHAT YOU WE'RE

1466
00:52:46,060 --> 00:52:49,764
GOING TO DO TODAY, SO THE THEME

1467
00:52:49,764 --> 00:52:50,898
IS PRECISION MEDICINE AND THIS

1468
00:52:50,898 --> 00:52:52,233
IS A STRAY JECTORY TEENLIC

1469
00:52:52,233 --> 00:52:54,268
PILLAR IN THE NIERK DCD

1470
00:52:54,268 --> 00:52:54,902
TRANSLATIONAL RESEARCH TEEJIC

1471
00:52:54,902 --> 00:52:57,305
PLAN AS YOU KNOW, SO THE GOAL OF

1472
00:52:57,305 --> 00:52:58,706
THIS PART OF--ACTUALLY THE GOAL

1473
00:52:58,706 --> 00:53:00,975
OF THIS DAY, I THINK IS TO

1474
00:53:00,975 --> 00:53:02,310
PROVIDE NIDCD CAN SOME INSIGHTS

1475
00:53:02,310 --> 00:53:05,747
AS TO HOW TO ACTUALLY ENABLE

1476
00:53:05,747 --> 00:53:10,718
PRECISION MEDICINE TO BE PART OF

1477
00:53:10,718 --> 00:53:11,219
COMMUNICATION DISORDERS

1478
00:53:11,219 --> 00:53:11,486
RESEARCH.

1479
00:53:11,486 --> 00:53:12,587
SO THAT'S WHAT WE'RE GOING TO

1480
00:53:12,587 --> 00:53:14,722
TRY TO TAKE OUT OF THE

1481
00:53:14,722 --> 00:53:15,289
DISCUSSION TODAY.

1482
00:53:15,289 --> 00:53:18,126
THE AGENDA OF THIS NEXT PART IS

1483
00:53:18,126 --> 00:53:20,128
FIRST OF ALL, I WILL JUST SAY A

1484
00:53:20,128 --> 00:53:22,663
FEW WORDS ABOUT THE FIELD OF

1485
00:53:22,663 --> 00:53:24,866
PRECISION MEDICINE AND THEN

1486
00:53:24,866 --> 00:53:26,267
WE'VE DERIVED QUESTIONS, TO

1487
00:53:26,267 --> 00:53:27,101
PROVIDE STRUCTURE TO THE

1488
00:53:27,101 --> 00:53:28,569
SESSIONS SO THAT WE CAN OPTIMIZE

1489
00:53:28,569 --> 00:53:30,071
IN THE SHORT PERIOD OF TIME WE

1490
00:53:30,071 --> 00:53:31,606
HAVE THE KINDS OF INFORMATION

1491
00:53:31,606 --> 00:53:36,677
CONVEYED BY OUR EXPERTS TO THE

1492
00:53:36,677 --> 00:53:36,978
NIDCD GROUP.

1493
00:53:36,978 --> 00:53:39,781
I WILL ASK EACH OF MY COLLEAGUES

1494
00:53:39,781 --> 00:53:43,684
TO INTRODUCE THEMSELVES BEFORE

1495
00:53:43,684 --> 00:53:44,619
THEY ANSWER THE FIRST QUESTION.

1496
00:53:44,619 --> 00:53:46,487
SO LET ME START OFF AND TELL

1497
00:53:46,487 --> 00:53:48,256
YOU, JUST A COUPLE THINGS FIRST

1498
00:53:48,256 --> 00:53:49,857
ABOUT MYSELF, AND ABOUT

1499
00:53:49,857 --> 00:53:52,193
PRECISION MEDICINE, AT LEAST A

1500
00:53:52,193 --> 00:53:53,494
VANTAGE POINT TO THINK ABOUT.

1501
00:53:53,494 --> 00:53:57,632
I AM TRAINED AS A CLINICIAN

1502
00:53:57,632 --> 00:53:58,232
SCIENTIST, MOLECULAR,

1503
00:53:58,232 --> 00:53:59,500
CARDIOLOGIST AND GENETICS, I

1504
00:53:59,500 --> 00:54:02,336
HAVE HAD EXPERIENCE IN ACADEMIA

1505
00:54:02,336 --> 00:54:04,672
AND INDUSTRY AND WENT BACK TO

1506
00:54:04,672 --> 00:54:09,177
ACADEMIA AND I MET DEBAT DUKE

1507
00:54:09,177 --> 00:54:10,244
UNIVERSITY AS COLLEAGUES AND I

1508
00:54:10,244 --> 00:54:12,680
CAME TO NIH TO BE THE CHIEF OF

1509
00:54:12,680 --> 00:54:13,514
MEDICAL AND SCIENTIFIC OFFICER

1510
00:54:13,514 --> 00:54:18,152
FOR ALL OF US AND SO I'VE BEEN

1511
00:54:18,152 --> 00:54:19,020
IN THE PRECISION MEDICINE SPACE,

1512
00:54:19,020 --> 00:54:22,390
I WOULD SAY ALL OF MY CAREER.

1513
00:54:22,390 --> 00:54:24,125
AND IT'S INTERESTING THAT THIS

1514
00:54:24,125 --> 00:54:27,195
IS THE YEAR 2023 AND IT'S 20

1515
00:54:27,195 --> 00:54:29,464
YEARS SENSE THE SEQUENCING OF

1516
00:54:29,464 --> 00:54:32,099
THE HUMAN GENOME WHICH NIH WAS

1517
00:54:32,099 --> 00:54:34,802
INTIMATELY INVOLVED IN AND A

1518
00:54:34,802 --> 00:54:37,271
STRONG DRIVER OF.

1519
00:54:37,271 --> 00:54:46,481
DESPITE THE HIGH  HYPERBOLE WE'D

1520
00:54:46,481 --> 00:54:48,483
IN THE LAST 20 YEARS, I WOULD

1521
00:54:48,483 --> 00:54:49,250
SAY IT'S REMARKABLE.

1522
00:54:49,250 --> 00:54:50,685
JUST THINK ABOUT CANCER, WE JUST

1523
00:54:50,685 --> 00:54:52,286
HEARD A LOT ABOUT THE POSSIBLES

1524
00:54:52,286 --> 00:54:54,956
OF CHILDHOOD CANCER BUT TODAY

1525
00:54:54,956 --> 00:54:57,859
THE ENTIRE ARC OF CARE OF CANCER

1526
00:54:57,859 --> 00:55:00,127
IS ENABLED BY PRECISION MEDICINE

1527
00:55:00,127 --> 00:55:02,296
IN THAT IT WASN'T FOR HUMAN

1528
00:55:02,296 --> 00:55:07,168
BENOAM, WE CAN PREDICT THE RESKS

1529
00:55:07,168 --> 00:55:08,669
OF SOMETHING DEVELOPING COLON

1530
00:55:08,669 --> 00:55:11,005
CANCER, BREAST CANCER AND OTHER

1531
00:55:11,005 --> 00:55:12,640
NUMEROUS VARIANTS THAT CAN BE

1532
00:55:12,640 --> 00:55:13,407
OBTAINED THROUGH GENOME

1533
00:55:13,407 --> 00:55:13,674
SEQUENCE.

1534
00:55:13,674 --> 00:55:16,811
WE CAN ALSO DO TESTING FOR EARLY

1535
00:55:16,811 --> 00:55:18,479
DETECTION THROUGH A NUMBER OF

1536
00:55:18,479 --> 00:55:19,914
ASSAYS OR LIQUID BIOPSIES FOR

1537
00:55:19,914 --> 00:55:21,282
DIAGNOSIS AND MOST OF THE

1538
00:55:21,282 --> 00:55:23,618
TREATMENTS OF CANCER NOW ARE

1539
00:55:23,618 --> 00:55:25,019
TARGETED THERAPIES GOING TO THE

1540
00:55:25,019 --> 00:55:29,323
ABILITY TO SEQUENCE THE TUMOR

1541
00:55:29,323 --> 00:55:30,758
GENOME, AND THRIVE DRUG TARGETS

1542
00:55:30,758 --> 00:55:31,726
AND ULTIMATELY MOLECULES THAT

1543
00:55:31,726 --> 00:55:32,994
WILL PREVENT THE GROWTH OF

1544
00:55:32,994 --> 00:55:35,229
TUMORS AND EVEN IN THE CARE OF A

1545
00:55:35,229 --> 00:55:37,999
PATIENT WITH CANCER, MANY OF THE

1546
00:55:37,999 --> 00:55:40,101
ANCILLARY DRUGS THAT ARE USED TO

1547
00:55:40,101 --> 00:55:42,069
CONTROL THEIR PAIN, OR NAUSEA

1548
00:55:42,069 --> 00:55:43,371
ARE SUBJECT TO PHARMA CO

1549
00:55:43,371 --> 00:55:44,338
GENETICS ROLE, SO THAT'S

1550
00:55:44,338 --> 00:55:45,973
SOMETHING THAT WAS JUST NOT,

1551
00:55:45,973 --> 00:55:49,143
PART OF A PATIENT'S CARE PLAN,

1552
00:55:49,143 --> 00:55:51,913
20 YEARS AGO, OR MAYBE EVEN 10

1553
00:55:51,913 --> 00:55:53,781
YEARS AGO AND PHARMA CO GENETICS

1554
00:55:53,781 --> 00:55:58,219
ITSELF IS A BROAD FIELD, IN THIS

1555
00:55:58,219 --> 00:56:01,422
ROOM, 95% OF US HARBOR A GENETIC

1556
00:56:01,422 --> 00:56:02,757
VARIANT AND GENES THAT CONTROL

1557
00:56:02,757 --> 00:56:04,792
DRUG METABOLISM FOR THE MOST

1558
00:56:04,792 --> 00:56:05,993
COMMONLY PRESCRIBED DRUGS IN IN

1559
00:56:05,993 --> 00:56:08,362
COUNTRY SO IF WE DON'T KNOW OUR

1560
00:56:08,362 --> 00:56:09,697
PHARMA CO GENETIC BACKGROUND

1561
00:56:09,697 --> 00:56:11,065
THEN IT'S LIKELY THAT 1 OF US OR

1562
00:56:11,065 --> 00:56:13,768
MORE OF US WILL ACTUALLY HAVE AN

1563
00:56:13,768 --> 00:56:15,036
UNINTENDED CONSEQUENCE OF A DRUG

1564
00:56:15,036 --> 00:56:16,504
OR MAYBE NOT GET OPTIMAL

1565
00:56:16,504 --> 00:56:17,371
THERAPY.

1566
00:56:17,371 --> 00:56:20,441
IF YOU THINK ABOUT RARE DISEASE,

1567
00:56:20,441 --> 00:56:23,844
WE CAN NOW SEE PEOPLE WITH

1568
00:56:23,844 --> 00:56:25,179
CYSTIC FIBROSIS, LIVING INTO

1569
00:56:25,179 --> 00:56:31,552
THEIR 60S WITH GREAT QUALITY OF

1570
00:56:31,552 --> 00:56:33,354
LIFE BECAUSE WE KNOW SOMETHING

1571
00:56:33,354 --> 00:56:34,989
ABOUT THE GENETIC VARIATIONS IN

1572
00:56:34,989 --> 00:56:38,726
THE CFTR, AND COMPANIES HAVE

1573
00:56:38,726 --> 00:56:40,261
RISEN TO THE CHALLENGES OF

1574
00:56:40,261 --> 00:56:42,330
TARGETING THOSE IN WAYS

1575
00:56:42,330 --> 00:56:43,965
UNBELIEVABLE 20 YEARS AGO AND

1576
00:56:43,965 --> 00:56:45,700
SICKLE CELL IS BEING CURED

1577
00:56:45,700 --> 00:56:47,401
THROUGH GENE EDITING SO RARE

1578
00:56:47,401 --> 00:56:51,639
DISEASES IS UNDERGOING A MAJOR

1579
00:56:51,639 --> 00:56:53,174
CONFORMATION, AS IS CHRONIC

1580
00:56:53,174 --> 00:56:56,277
DISEASES, WE'RE SEEING POLYGENIC

1581
00:56:56,277 --> 00:56:58,879
RISK SCORES DERIVED AND USE

1582
00:56:58,879 --> 00:57:00,748
INDEED CLINIC TO ENHANCE 1'S

1583
00:57:00,748 --> 00:57:02,383
ABILITY FOR THE ONSET OF DECS

1584
00:57:02,383 --> 00:57:04,251
AND THOSE ARE COMPLEMENTED BY

1585
00:57:04,251 --> 00:57:05,553
SOCIAL DETERMINANTS OF HEALTH

1586
00:57:05,553 --> 00:57:07,955
DATA OR ENVIRONMENTAL DATA GIVE

1587
00:57:07,955 --> 00:57:09,390
A FULLY WHOLISTIC VIEW OF RISK,

1588
00:57:09,390 --> 00:57:10,791
NOT JUST A GENOMIC VIEW OF RISK

1589
00:57:10,791 --> 00:57:17,999
AND I THINK ALL OF THESE COULD

1590
00:57:17,999 --> 00:57:20,901
BE PERTINENT TO THE NIDCD AGENDA

1591
00:57:20,901 --> 00:57:22,570
AND I WILL SAY 1 MORE THING

1592
00:57:22,570 --> 00:57:23,638
BEFORE WE GO INTO THE QUESTIONS

1593
00:57:23,638 --> 00:57:26,674
ABOUT ALL OF US, THE ALL OF US

1594
00:57:26,674 --> 00:57:31,245
RESEARCH PROGRAM, WE ARE NOW AT

1595
00:57:31,245 --> 00:57:31,946
ABOUT 700,000 PLUS INDIVIDUAL

1596
00:57:31,946 --> 00:57:35,316
WHO IS HAVE CONSENTED.

1597
00:57:35,316 --> 00:57:38,486
WE HAVE 500,000--AROUND 500,000

1598
00:57:38,486 --> 00:57:40,988
ELECTRONIC HEALTH RECORDS

1599
00:57:40,988 --> 00:57:41,856
ACQUIRED.

1600
00:57:41,856 --> 00:57:43,290
WE RELEASE 250,000 WHOLE GENOME

1601
00:57:43,290 --> 00:57:45,126
SEQUENCES ON TO OUR RESEARCHER

1602
00:57:45,126 --> 00:57:48,896
WORK BENCH AND THE--AND SO WE'VE

1603
00:57:48,896 --> 00:57:49,864
AMASSED JUST AS YOU'VE HEARD

1604
00:57:49,864 --> 00:57:52,867
FROM ADAM ON A SMALLER SCALE, AN

1605
00:57:52,867 --> 00:57:56,203
ARK MAZING DATA STORE THAT CAN

1606
00:57:56,203 --> 00:57:57,471
PROVIDE INSIGHTS INTO MANY

1607
00:57:57,471 --> 00:57:59,640
COMMON CHRONIC DISEASES AS WELL

1608
00:57:59,640 --> 00:58:01,175
AS RARE DISEASES IN WAYS THAT

1609
00:58:01,175 --> 00:58:03,044
WERE NEVER ACHIEVABLE BY HAVING

1610
00:58:03,044 --> 00:58:04,145
A FULLY ACCESSIBLE DATA PLATFORM

1611
00:58:04,145 --> 00:58:06,013
OF THE TYPE THAT WE'VE BEEN

1612
00:58:06,013 --> 00:58:09,183
BUILDING AND CONTINUED TO BUILD

1613
00:58:09,183 --> 00:58:09,383
OUT.

1614
00:58:09,383 --> 00:58:13,688
SO WITH THAT, I WILL LIKE TO

1615
00:58:13,688 --> 00:58:16,090
NOW, TURN IT OVER NOW TO OUR

1616
00:58:16,090 --> 00:58:19,493
PANELIST ANDS ASK THE FESTER

1617
00:58:19,493 --> 00:58:22,763
QUESTION ANDIME THINKING IN VERY

1618
00:58:22,763 --> 00:58:24,065
PRAGMATIC TERMS.

1619
00:58:24,065 --> 00:58:27,868
SO NIDCD WANTS TO BUILD, MAYBE

1620
00:58:27,868 --> 00:58:31,005
ACQUIRE OR PARTNER WITH GROUPS

1621
00:58:31,005 --> 00:58:31,872
THAT ARE DEVELOPING DIFFERENT

1622
00:58:31,872 --> 00:58:34,108
TYPES OF DATA TO ANSWER

1623
00:58:34,108 --> 00:58:36,143
PERTINENT AND SCIENTIFIC

1624
00:58:36,143 --> 00:58:37,311
QUESTIONS TO THIS INSTITUTE, ID

1625
00:58:37,311 --> 00:58:38,679
LIKE EACH OF YOU TO TELL US YOUR

1626
00:58:38,679 --> 00:58:40,247
DREAM FOR WHAT THAT DATA █STORE

1627
00:58:40,247 --> 00:58:43,684
SHOULD LOOK LIKE TO ENABLE NIDCD

1628
00:58:43,684 --> 00:58:45,086
TO ACHIEVE ITS VISION EMPLOY

1629
00:58:45,086 --> 00:58:46,954
WHAT ARE SOME--IT'S NOT--IT

1630
00:58:46,954 --> 00:58:48,556
SHOULDN'T IN MY MIND AT LEAST IT

1631
00:58:48,556 --> 00:58:50,157
SHOULD NOT BE JUST DATA FOR THE

1632
00:58:50,157 --> 00:58:51,325
SAKE OF COLLECTING DATA BUT DATA

1633
00:58:51,325 --> 00:58:53,294
IN THE CONTEXT OF WHAT

1634
00:58:53,294 --> 00:58:54,328
SCIENTIFIC QUESTIONS WILL THESE

1635
00:58:54,328 --> 00:58:58,666
DATA ENABLE US TO ANSWER THAT WE

1636
00:58:58,666 --> 00:58:59,100
CAN'T WITHOUT IT.

1637
00:58:59,100 --> 00:59:00,568
SO MAYBE I'LL START WITH YOSH

1638
00:59:00,568 --> 00:59:02,470
AND WE'LL COME THIS WAY, GIVE

1639
00:59:02,470 --> 00:59:04,872
ADAM A CHANCE TO REST FOR A

1640
00:59:04,872 --> 00:59:05,906
MOMENT.

1641
00:59:05,906 --> 00:59:06,340
>> ABSOLUTELY.

1642
00:59:06,340 --> 00:59:08,109
I'M JOSHUA LEV WHY, MY

1643
00:59:08,109 --> 00:59:18,152
BACKGROUND TRAINING IS IN

1644
00:59:18,152 --> 00:59:20,621
OTOLARYNG OLOGY, AND OTOWHINE O

1645
00:59:20,621 --> 00:59:22,523
INFLATION AND IT WAS A FANTASTIC

1646
00:59:22,523 --> 00:59:22,757
TALK.

1647
00:59:22,757 --> 00:59:29,764
I THINK A LOT OF THE--WHAT WE

1648
00:59:29,764 --> 00:59:31,932
ARK SPIRE TO AS A FEEL IN TERMS

1649
00:59:31,932 --> 00:59:34,168
OF DATA COLLECTION ARE THINGS

1650
00:59:34,168 --> 00:59:35,736
THAT ARE SCALABLE, UNIVERSAL,

1651
00:59:35,736 --> 00:59:37,037
BUT GROUNDED IN [INDISCERNIBLE]

1652
00:59:37,037 --> 00:59:39,974
WHICH IS SOMETHING I THINK CAN

1653
00:59:39,974 --> 00:59:41,142
OFTEN BE LOST PARTICULARLY AND

1654
00:59:41,142 --> 00:59:43,444
THIS IS THE BIG POINT THAT I

1655
00:59:43,444 --> 00:59:45,112
HOPE WE DIG INTO THE NEED FOR

1656
00:59:45,112 --> 00:59:50,751
DATA STABBED ARDS --STANDARDS AD

1657
00:59:50,751 --> 00:59:51,452
CLEAR REPORTING AND

1658
00:59:51,452 --> 00:59:52,386
UNDERSTANDABILITY OF WHAT I CALL

1659
00:59:52,386 --> 00:59:55,256
LOSS OF SMELL AT MY INSTITUTE

1660
00:59:55,256 --> 00:59:57,258
ALIGNS WITH THE SAME DIAGNOSIS,

1661
00:59:57,258 --> 00:59:59,326
THE SAME METRIC THAT'S MEASURED

1662
00:59:59,326 --> 01:00:08,769
AND REPORTED IN A COMMON

1663
01:00:08,769 --> 01:00:09,270
DATABASE.

1664
01:00:09,270 --> 01:00:18,712
>> YES, GOOD MORNING I'M

1665
01:00:18,712 --> 01:00:20,181
VALENTINA, FRANCESCA, LEADING

1666
01:00:20,181 --> 01:00:21,782
THE HUMAN GENOME RESEARCH

1667
01:00:21,782 --> 01:00:24,185
INSTITUTE, MY BACKGROUND IS

1668
01:00:24,185 --> 01:00:24,985
MATHEMATICS AND STATISTICS.

1669
01:00:24,985 --> 01:00:26,954
I CAME TO THE NIEKS H, I WAS

1670
01:00:26,954 --> 01:00:28,823
ALWAYS ABOUTED IN THE

1671
01:00:28,823 --> 01:00:30,825
APPLICATIONS OF MATHEMATICAL AND

1672
01:00:30,825 --> 01:00:32,660
STATISTICAL TOOLS TO REAL WORLD

1673
01:00:32,660 --> 01:00:33,994
CHALLENGES AND SO, I HAVE--IT

1674
01:00:33,994 --> 01:00:36,697
WAS LIKE ENOUGH TO COME TO THE

1675
01:00:36,697 --> 01:00:38,666
NIH TO DO A POST DOCTORAL

1676
01:00:38,666 --> 01:00:40,801
FELLOWSHIP, THAT'S HOW I STARTED

1677
01:00:40,801 --> 01:00:45,239
TO LEARN BIOLOGY, SO, AND I WAS

1678
01:00:45,239 --> 01:00:46,774
LUCKY ENOUGH TO GET INTO

1679
01:00:46,774 --> 01:00:48,542
GENOMICS AT THE VERY EARLY YEARS

1680
01:00:48,542 --> 01:00:50,945
FOR THE INSTITUTE GENOMIC

1681
01:00:50,945 --> 01:00:52,813
RESEARCH, GENOMICS, I WAS

1682
01:00:52,813 --> 01:00:54,014
INVOLVED IN THE HUMAN GENOME

1683
01:00:54,014 --> 01:00:56,984
PROJECT AND BASICALLY BECAME A

1684
01:00:56,984 --> 01:00:57,852
COMPUTATIONAL GENOMICS ALL THE

1685
01:00:57,852 --> 01:01:01,589
TIME AND THEN I CAME TO THE NIH

1686
01:01:01,589 --> 01:01:03,357
AS A PROGRAM OFFICER, ALWAYS

1687
01:01:03,357 --> 01:01:05,993
BEEN INVOLVED IN VARIOUS

1688
01:01:05,993 --> 01:01:08,662
PROGRAMS ABOUT DOING ANALYSIS OF

1689
01:01:08,662 --> 01:01:10,664
GENOMIC DATA, SO I'M VERY

1690
01:01:10,664 --> 01:01:12,900
COMMITTED AND INTERESTED IN ALL

1691
01:01:12,900 --> 01:01:15,069
THINGS ABOUT HOW TO EXTRACT

1692
01:01:15,069 --> 01:01:17,171
INFORMATION FROM THE DATA BEING

1693
01:01:17,171 --> 01:01:18,505
DPENERATED, HOW TO ANALYZE IT

1694
01:01:18,505 --> 01:01:20,975
AND CREATING THE ENVIRONMENT AND

1695
01:01:20,975 --> 01:01:23,177
RESOURCES THAT ADAM JUST TALKED

1696
01:01:23,177 --> 01:01:25,012
ABOUT BECAUSE IT'S A BIG

1697
01:01:25,012 --> 01:01:25,746
CHALLENGE.

1698
01:01:25,746 --> 01:01:27,815
IT'S OBVIOUS THAT BIOMEDICAL

1699
01:01:27,815 --> 01:01:29,950
RESEARCH IS TIGHTLY CONNECKED TO

1700
01:01:29,950 --> 01:01:32,219
THE PROGRESS OF DATA SCIENCE

1701
01:01:32,219 --> 01:01:34,889
TECHNOLOGIES AND SO, HOW TO MAKE

1702
01:01:34,889 --> 01:01:36,824
SURE THAT NIH VALUES INSTITUTES

1703
01:01:36,824 --> 01:01:39,994
ACROSS THE NIH HAVE THE TOOLS

1704
01:01:39,994 --> 01:01:44,031
AND THE TECHNOLOGIES TO DO

1705
01:01:44,031 --> 01:01:44,365
EXACTLY THAT.

1706
01:01:44,365 --> 01:01:45,633
BIG DATA HAS BEEN GENERATED AND

1707
01:01:45,633 --> 01:01:48,402
IT IS A WELL-KNOWN SECRET THAT

1708
01:01:48,402 --> 01:01:50,638
EVEN THOUGH WE ARE REALLY GOOD

1709
01:01:50,638 --> 01:01:52,172
AT GENERATING DATA AND NOT THAT

1710
01:01:52,172 --> 01:01:54,008
GOOD AT ANALYZING IT AND ALSO

1711
01:01:54,008 --> 01:01:55,109
NOT THAT GOOD ABOUT MAKING THE

1712
01:01:55,109 --> 01:01:56,777
TOOLS RABBLE TO THE CLINICIANS

1713
01:01:56,777 --> 01:01:58,145
AND TO BIOMEDICAL RESEARCHERS

1714
01:01:58,145 --> 01:02:01,448
THAT ACTUALLY NEED TO USE IT SO

1715
01:02:01,448 --> 01:02:03,918
HOW TO TRANSLATE ALL THIS WEALTH

1716
01:02:03,918 --> 01:02:06,453
OF INFORMATION INTO SOMETHING

1717
01:02:06,453 --> 01:02:07,554
THAT IS MANAGEABLE AND

1718
01:02:07,554 --> 01:02:08,489
UNDERSTANDABLE BY THE PEOPLE

1719
01:02:08,489 --> 01:02:10,824
THAT NEED TO USE IT NOT ONLY THE

1720
01:02:10,824 --> 01:02:13,694
CLINICIANS BUT ALSO PATIENTS

1721
01:02:13,694 --> 01:02:16,597
THAT IS REALLY A PASSION OF

1722
01:02:16,597 --> 01:02:17,298
MINE.

1723
01:02:17,298 --> 01:02:21,402
I AM LUCKY ENOUGH THAT I AM AT

1724
01:02:21,402 --> 01:02:22,903
NHGRI THAT IS AT THE FOREFRONT

1725
01:02:22,903 --> 01:02:24,238
OF THESE QUESTIONS SO FOR ME

1726
01:02:24,238 --> 01:02:28,909
IT'S FROM THE POINT OF VIEW AS

1727
01:02:28,909 --> 01:02:31,512
AN ADMINISTRATOR AT THE NIH, I

1728
01:02:31,512 --> 01:02:32,780
AM VERY GLAD WE ARE THAT

1729
01:02:32,780 --> 01:02:34,281
OPPORTUNITY FOR ME TO BE HERE SO

1730
01:02:34,281 --> 01:02:37,651
THAT WE CAN TRY TO ESTABLISH

1731
01:02:37,651 --> 01:02:39,186
COLLABORATIONS ON THIS VERY

1732
01:02:39,186 --> 01:02:41,322
IMPORTANT TOPICS WHERE WE ARE

1733
01:02:41,322 --> 01:02:42,623
DOING PROGRESS IN DIFFERENT WAYS

1734
01:02:42,623 --> 01:02:44,491
AND THERE'S A LOT OF KNOWLEDGE

1735
01:02:44,491 --> 01:02:50,497
THAT WE CAN SHARE, SO I WILL

1736
01:02:50,497 --> 01:02:51,332
STOP HERE.

1737
01:02:51,332 --> 01:02:53,167
>> SO I ALWAYS LIKE TO
SHARE

1738
01:02:53,167 --> 01:03:01,508
MISTAKES WE'VE MADE AS CONTEXT.

1739
01:03:01,508 --> 01:03:04,044
AND SO YOU SAW OUR EFFORTS NOW,

1740
01:03:04,044 --> 01:03:06,180
SO WEY GANNA WITH GENERATED

1741
01:03:06,180 --> 01:03:07,614
RETIRING MOLECULAR DATA SETS, IN

1742
01:03:07,614 --> 01:03:09,416
PART BECAUSE WE BELIEVE IN

1743
01:03:09,416 --> 01:03:11,885
MOLECULAR DAILY BASIS THEA SETS

1744
01:03:11,885 --> 01:03:15,522
AS A CONDUIT FOR DRUGS, SPECIFIC

1745
01:03:15,522 --> 01:03:15,956
MUTATION OR CONTEXT.

1746
01:03:15,956 --> 01:03:19,393
THE MISTAKE WE MADE, I THINK

1747
01:03:19,393 --> 01:03:20,794
TIES TO YOUR CHARGE WHICH IS IF

1748
01:03:20,794 --> 01:03:26,900
YOU GO TO ANY  ANY MOLECULAR TUR

1749
01:03:26,900 --> 01:03:28,369
BOARD AT ANY HOSPITAL, THE FIRST

1750
01:03:28,369 --> 01:03:31,372
THINK THIS THEY PULL UP IS THE

1751
01:03:31,372 --> 01:03:33,107
IN, RI, THE RADIOLOGY REPORT,

1752
01:03:33,107 --> 01:03:34,842
THE HISTOLOGY SLIDE AND THEN,

1753
01:03:34,842 --> 01:03:38,846
THEY'LL GET TO THE MOLECULAR

1754
01:03:38,846 --> 01:03:39,113
FEATURES.

1755
01:03:39,113 --> 01:03:40,948
SO THE PART I THINK WE MISS

1756
01:03:40,948 --> 01:03:45,119
EARLY ON IS NOT YOUR RECOGNIZED

1757
01:03:45,119 --> 01:03:46,720
THAT WE SHOULD ACTUALLY ANCHOR

1758
01:03:46,720 --> 01:03:52,826
INTO WHAT IS THE CLINICAL DATA

1759
01:03:52,826 --> 01:03:54,495
SET, RIGHT, THAT CLINICIANS ARE

1760
01:03:54,495 --> 01:03:56,497
ACTUALLY CURRENTLY USING IN THE

1761
01:03:56,497 --> 01:03:58,832
CONTEXT OF CARE, THAT WAVE FORM

1762
01:03:58,832 --> 01:03:59,867
DATA, IMAGING DATA, 1 OF THE

1763
01:03:59,867 --> 01:04:01,402
ASSAY THAIS ARE DOING CLINICALLY

1764
01:04:01,402 --> 01:04:03,737
AND HOW ARE THEY ASSEMBLING THAT

1765
01:04:03,737 --> 01:04:07,074
CAT ON BEHALF OF CARE, LIKELY

1766
01:04:07,074 --> 01:04:09,710
NOT THROUGH A DATABASE, RIGHT,

1767
01:04:09,710 --> 01:04:11,445
THEY'RE ASSEMBLING IN THEIR

1768
01:04:11,445 --> 01:04:11,945
MIND, RIGHT?

1769
01:04:11,945 --> 01:04:13,113
EACH 1 INDIVIDUALLY BUT

1770
01:04:13,113 --> 01:04:15,416
RECOGNIZING THAT WITHIN EACH

1771
01:04:15,416 --> 01:04:18,152
DOMAIN, THERE'S TYPICAL LYE A

1772
01:04:18,152 --> 01:04:19,787
SET, RIGHT, OF CLINICAL DAT THAT

1773
01:04:19,787 --> 01:04:22,523
COMES FROM TECH SPACE INTERFACE

1774
01:04:22,523 --> 01:04:24,058
PLUS SOME MODALITIES THAT ARE

1775
01:04:24,058 --> 01:04:25,192
BEING ASSAYS IN MEASUREMENTS

1776
01:04:25,192 --> 01:04:28,929
THAT ARE BEING TAKEN INTO

1777
01:04:28,929 --> 01:04:29,229
ACCOUNT.

1778
01:04:29,229 --> 01:04:33,600
RARELY, HAVE I SEEN AND MADE

1779
01:04:33,600 --> 01:04:35,002
THOSE MISTAKES, AS INFRANCIS

1780
01:04:35,002 --> 01:04:36,236
COLLINS STRUCKURE FOR PRECISION

1781
01:04:36,236 --> 01:04:37,438
MEDICINE BEEN BUILT THINKING

1782
01:04:37,438 --> 01:04:39,106
ABOUT THE COMBINATION OF DATA

1783
01:04:39,106 --> 01:04:41,608
THAT THE CLINICAL PEOPLE

1784
01:04:41,608 --> 01:04:44,778
ACTUALLY USE IN COMBINATION

1785
01:04:44,778 --> 01:04:46,513
RIGHT, FOR CARE, AS THE

1786
01:04:46,513 --> 01:04:48,515
FOUNDATION UPON WHICH YOU EXTEND

1787
01:04:48,515 --> 01:04:50,350
THE ADDITIONAL DATA MODALITIES,

1788
01:04:50,350 --> 01:04:52,119
MAKE SENSE, SO, YOU KNOW LIKE I

1789
01:04:52,119 --> 01:04:55,456
SAID, THE MINUTE WE STARTED

1790
01:04:55,456 --> 01:04:56,123
HAVING MOLECULAR FINDINGS,

1791
01:04:56,123 --> 01:04:58,058
PEOPLE SAY LET ME SEE THE MRI,

1792
01:04:58,058 --> 01:05:00,461
THEY'RE USED TO THAT, THAT'S HOW

1793
01:05:00,461 --> 01:05:04,364
THEY TREAT THEIR PATIENTS.

1794
01:05:04,364 --> 01:05:09,703
ONE OF THE DATA  MODALITIES THE

1795
01:05:09,703 --> 01:05:11,638
CLENITION USES, BUT HOW CAN

1796
01:05:11,638 --> 01:05:16,243
THOSE BE EXPANDED THROUGH DATA

1797
01:05:16,243 --> 01:05:18,078
SCIENCE INFRASTRUCTURE IS AN

1798
01:05:18,078 --> 01:05:18,912
EXTREMELY UNIQUE OPPORTUNITY

1799
01:05:18,912 --> 01:05:20,514
THAT'S NOT ALWAYS BEEN DONE, IN

1800
01:05:20,514 --> 01:05:22,082
PART BECAUSE IT'S A CHALLENGE.

1801
01:05:22,082 --> 01:05:27,187
WAIT FOR DATA, HAS TO BE MANAGED

1802
01:05:27,187 --> 01:05:29,990
DIFFERENTLY THAN.COM DATA OR

1803
01:05:29,990 --> 01:05:32,126
TEXT-BASED DATA OR MOLECULAR

1804
01:05:32,126 --> 01:05:32,326
DATA.

1805
01:05:32,326 --> 01:05:34,394
BUT I THINK THAT COMMUNITIES

1806
01:05:34,394 --> 01:05:36,130
THAT START FRESH POTENTIALLY

1807
01:05:36,130 --> 01:05:40,534
HAVE A OPPORTUNITY TO LEAP FROG,

1808
01:05:40,534 --> 01:05:41,368
MAKE DECISIONS DIFFERENTLY THAN

1809
01:05:41,368 --> 01:05:43,170
THOSE OF US WHO GRIND OUR WAY

1810
01:05:43,170 --> 01:05:45,672
THROUGH IT EARLY ON.

1811
01:05:45,672 --> 01:05:46,140
>> THANKS.

1812
01:05:46,140 --> 01:05:47,741
I WOULD LIKE TO DRILL DOWN A

1813
01:05:47,741 --> 01:05:50,244
LITTLE BIT INTO SOME DETAILS,

1814
01:05:50,244 --> 01:05:51,512
BASED ON YOUR 3 RESPONSES AND

1815
01:05:51,512 --> 01:05:54,248
I'M GOING TO TAKE THE

1816
01:05:54,248 --> 01:05:56,483
PERSPECTIVE OF SOMEBODY WHO'S

1817
01:05:56,483 --> 01:05:59,153
HAD REQUESTS FROM THE RESEARCH

1818
01:05:59,153 --> 01:05:59,753
COMMUNITY, THE COMMUNICATIONS

1819
01:05:59,753 --> 01:06:00,587
RESEARCH COMMUNITY ABOUT ALL OF

1820
01:06:00,587 --> 01:06:03,690
US, WHERE IS THE AUDIOGRAM DATA,

1821
01:06:03,690 --> 01:06:07,794
WHERE IS THE SPEECH DATA, CAN WE

1822
01:06:07,794 --> 01:06:09,530
CAPTURE LINKAGES TO

1823
01:06:09,530 --> 01:06:12,065
ENVIRONMENTAL NOISE FEATURES AND

1824
01:06:12,065 --> 01:06:14,101
YOU KNOW MAKE--AND THROUGH

1825
01:06:14,101 --> 01:06:15,602
GEOCODING BE ABLE TO UNDERSTAND

1826
01:06:15,602 --> 01:06:21,074
THE ENVIRONMENT OF THE PERSON

1827
01:06:21,074 --> 01:06:22,809
EXPERIENCING SOME TYPE OF

1828
01:06:22,809 --> 01:06:23,377
HEALTH-DISEASE TRANSITION.

1829
01:06:23,377 --> 01:06:24,878
SO FIRST OF ALL I WOULD LIKE YOU

1830
01:06:24,878 --> 01:06:26,446
TO REAC TO THE KINDS OF DATA AT

1831
01:06:26,446 --> 01:06:29,516
THAT LEVEL THAT WILL BE CRITICAL

1832
01:06:29,516 --> 01:06:32,252
FOR NIDCD TO ACHIEVE PRECISION

1833
01:06:32,252 --> 01:06:35,589
MEDICINE IN THIS REGUARD AND

1834
01:06:35,589 --> 01:06:37,891
ALSO THINK ABOUT THE STANDARDS

1835
01:06:37,891 --> 01:06:39,893
AND MAKING IT INTEROPERABLE,

1836
01:06:39,893 --> 01:06:40,994
MAYBE DIFFERENT HEALTH SYSTEMS

1837
01:06:40,994 --> 01:06:43,263
HAVE DIFFERENT WAYS TO CAPTURE

1838
01:06:43,263 --> 01:06:44,531
AUDIOGRAM DATA, DO THEY ACTUALLY

1839
01:06:44,531 --> 01:06:46,033
COMMUNICATE WITH EACH OTHER, DO

1840
01:06:46,033 --> 01:06:48,335
RESEARCHERS ACTUALLY KNOW HOW TO

1841
01:06:48,335 --> 01:06:51,405
USE AND TRANSFORM THOSE DATA

1842
01:06:51,405 --> 01:06:52,506
INTO USEABLE FEATURES THAT THEY

1843
01:06:52,506 --> 01:06:55,409
CAN USE IN THE RESEARCH SO THE

1844
01:06:55,409 --> 01:06:57,578
TOOLS, PIECE AND THEN THE

1845
01:06:57,578 --> 01:06:58,612
COMBINATORIAL ASPECT, TOO, SO I

1846
01:06:58,612 --> 01:07:00,847
WOULD LIKE TO GET MORE INTO THE

1847
01:07:00,847 --> 01:07:03,450
DETAILS OF YOU KNOW THE DATA

1848
01:07:03,450 --> 01:07:05,886
TYPES AND WHAT THE CHALLENGES

1849
01:07:05,886 --> 01:07:06,386
MIGHT BE.

1850
01:07:06,386 --> 01:07:07,588
NYEAH, I LOVE THE QUESTION, I

1851
01:07:07,588 --> 01:07:12,192
WOULD LIKE TO ECHO, GIVE US THE

1852
01:07:12,192 --> 01:07:12,693
DATA.

1853
01:07:12,693 --> 01:07:14,194
IT'S AN EDUCATION THAT I'VE

1854
01:07:14,194 --> 01:07:16,463
RECENTLY HAD TRYING TO TACKLE

1855
01:07:16,463 --> 01:07:21,768
THIS QUESTION IN THAT AS A

1856
01:07:21,768 --> 01:07:23,437
CLINICIAN, OF COURSE IT'S EASY.

1857
01:07:23,437 --> 01:07:24,238
WE KNOW AUTOIMPORTANT AND WE CAN

1858
01:07:24,238 --> 01:07:26,073
GET THE DAILY BASIS THEA AND

1859
01:07:26,073 --> 01:07:27,608
STANDARDS ARE JUST THE DEFINED

1860
01:07:27,608 --> 01:07:29,176
DEFINITION OF WHAT WE VALUE BUT

1861
01:07:29,176 --> 01:07:30,644
IN PRACTICE, THE EDUCATION I'VE

1862
01:07:30,644 --> 01:07:32,179
HAD IS THAT IT'S INCREDIBLY

1863
01:07:32,179 --> 01:07:34,481
DIFFICULT AND I WANT TO

1864
01:07:34,481 --> 01:07:36,783
ACKNOWLEDGE KELLIE KENNING WHO'S

1865
01:07:36,783 --> 01:07:38,252
HELPED TO LEAD THIS EFFORT

1866
01:07:38,252 --> 01:07:40,120
WITHIN THE HEARING SPACE WHERE

1867
01:07:40,120 --> 01:07:42,055
WE'VE ACTUALLY PARTNERED WITH

1868
01:07:42,055 --> 01:07:45,259
THE NATIONAL ACADEMIES TO BRING

1869
01:07:45,259 --> 01:07:47,227
DIFFERENT STAKEHOLDERS TO 1

1870
01:07:47,227 --> 01:07:49,162
PLACE, DIFFERENT VALUES SO THAT

1871
01:07:49,162 --> 01:07:53,166
WE CAN ACCEPT AND ADOPT THESE

1872
01:07:53,166 --> 01:07:54,868
STANDARDS WHICH ARE THEN

1873
01:07:54,868 --> 01:07:56,703
INTEROPERABLE BECAUSE RIGHT NOW,

1874
01:07:56,703 --> 01:07:59,640
A PDF OF AN AUDIOGRAM AS YOU

1875
01:07:59,640 --> 01:08:08,181
MENTIONED, IS VERY LIMITED

1876
01:08:08,181 --> 01:08:09,383
EMPLOY SPHRKS I DON'T HAVE AN

1877
01:08:09,383 --> 01:08:10,651
SECOND WORLD WAR ARE TO THAT

1878
01:08:10,651 --> 01:08:12,953
QUESTION BUT I AM 1 THAT IS

1879
01:08:12,953 --> 01:08:14,621
WONDERING WHETHER WE CAN USE

1880
01:08:14,621 --> 01:08:16,056
LANGUAGE MODELS TO DEFINE

1881
01:08:16,056 --> 01:08:17,557
STANDARDS AND ENCOURAGE THE AX

1882
01:08:17,557 --> 01:08:21,061
DOPGZ OF STANDARDS BY

1883
01:08:21,061 --> 01:08:22,095
RESEARCHERS.

1884
01:08:22,095 --> 01:08:24,531
BECAUSE IT'S DIFFICULT, RIGHT,

1885
01:08:24,531 --> 01:08:26,233
IT'S REALLY DIFFICULT TO DEFINE

1886
01:08:26,233 --> 01:08:27,668
STANDARDS THAT WORK WITH

1887
01:08:27,668 --> 01:08:28,702
DIFFERENT COMMUNITIES ATA A HIGH

1888
01:08:28,702 --> 01:08:30,771
LEVEL AND IT'S ALSO VERY

1889
01:08:30,771 --> 01:08:33,407
DIFFICULT ONCE THE STANDARD IS

1890
01:08:33,407 --> 01:08:36,743
DEFINED TO REALLY IMPLEMENT IT

1891
01:08:36,743 --> 01:08:39,313
IN REAL CASE SITUATIONS SO TO

1892
01:08:39,313 --> 01:08:41,114
HAVE TOOLS AND LARGE LANGUAGE

1893
01:08:41,114 --> 01:08:43,617
MODELS HAVE DIFFERENT FEATURES,

1894
01:08:43,617 --> 01:08:46,119
THAT SEEM PROMISING THAT COULD

1895
01:08:46,119 --> 01:08:47,888
FACILITATE ONCE THE STANDARD IS

1896
01:08:47,888 --> 01:08:50,590
IN PLACE, COULD FACILITATE THE

1897
01:08:50,590 --> 01:08:52,259
ADOPTION OF THESE STANDARDS BY

1898
01:08:52,259 --> 01:08:59,433
THE RESEARCH COMMUNITY, JUST AN

1899
01:08:59,433 --> 01:08:59,766
IDEA.

1900
01:08:59,766 --> 01:09:00,834
>> HUNDRED PERCENT AGREE
WITH

1901
01:09:00,834 --> 01:09:02,869
YOUR COMMENT.

1902
01:09:02,869 --> 01:09:05,939
WE EVEN SEE THIS IN FIELDS THAT

1903
01:09:05,939 --> 01:09:10,977
HAVE SOME ESTABLISHED LIKE

1904
01:09:10,977 --> 01:09:12,346
IMAGING FOR EXAMPLE.

1905
01:09:12,346 --> 01:09:13,647
I WAS ALWAYS REFLECT AND

1906
01:09:13,647 --> 01:09:15,649
CONTHECT IT TO GENOMICS,

1907
01:09:15,649 --> 01:09:16,983
GENOMICS YES THERE ARE DIFFERENT

1908
01:09:16,983 --> 01:09:18,919
PLATFORMS BUT AS A FIELD WE SORT

1909
01:09:18,919 --> 01:09:21,421
OF HAVE A HANDLE ON HOW TO MAKE

1910
01:09:21,421 --> 01:09:23,790
THEM EQUAL OR THAT CAN BE

1911
01:09:23,790 --> 01:09:24,124
EQUALIZED.

1912
01:09:24,124 --> 01:09:25,225
MANY OTHER MODALITIES WE DON'T

1913
01:09:25,225 --> 01:09:31,098
AS A CONTEXT AND SO I'VE OFTEN

1914
01:09:31,098 --> 01:09:34,301
WONDERED WHY STANDARDS EMERGE.

1915
01:09:34,301 --> 01:09:36,303
STANDARDS EMERGE BECAUSE OF

1916
01:09:36,303 --> 01:09:37,904
VALUE PROPOSITION FOR

1917
01:09:37,904 --> 01:09:38,538
IMPLEMENTATION OF STANDARDS FOR

1918
01:09:38,538 --> 01:09:41,408
THOSE WHO ARE FORCED TO CHANGE

1919
01:09:41,408 --> 01:09:41,775
PRACTICE, RIGHT?

1920
01:09:41,775 --> 01:09:42,442
DPE NATIONAL LIBRARY OF MEDICINE

1921
01:09:42,442 --> 01:09:43,110
INCREASE IN BODYS IT WAS CLEAR,

1922
01:09:43,110 --> 01:09:44,411
IF I WANT TO INTERPRET MY

1923
01:09:44,411 --> 01:09:46,380
GENOME, I HAVE TO INTERPRET MY

1924
01:09:46,380 --> 01:09:48,682
CONTEXT OF OTHER GENOMES, SO

1925
01:09:48,682 --> 01:09:50,417
THERE BETTER BE A STANDARD FOR

1926
01:09:50,417 --> 01:09:52,285
ME TO COMPARE THEM.

1927
01:09:52,285 --> 01:09:57,157
I THINK THAT THAT'S THE KEY,

1928
01:09:57,157 --> 01:09:59,559
RIGHT, IS THE GAP THAT I

1929
01:09:59,559 --> 01:10:00,627
MENTIONED IS UNTIL THE POINT

1930
01:10:00,627 --> 01:10:02,129
WHERE YOU CAN ACTUALLY ADD VALUE

1931
01:10:02,129 --> 01:10:05,599
TO THE CLINICIAN LOOKING AT THAT

1932
01:10:05,599 --> 01:10:12,172
PDF,  IMPLEMENTS STANDARDS IS AN

1933
01:10:12,172 --> 01:10:13,473
OVERHEAD, VERY CHALLENGING.

1934
01:10:13,473 --> 01:10:15,976
OR ALTERNATIVELY IF THERE'S AN

1935
01:10:15,976 --> 01:10:17,711
NIH FUNDED PROJECT THE OTHER

1936
01:10:17,711 --> 01:10:19,646
INCENTIVE IS FINANCIAL OR

1937
01:10:19,646 --> 01:10:23,617
ACADEMIC SO I THINK THIS IS THE

1938
01:10:23,617 --> 01:10:25,419
PROMISE OF AN ANALYTIC FRAMEWORK

1939
01:10:25,419 --> 01:10:26,686
THAT'S LINKED TO HEALTHCARE.

1940
01:10:26,686 --> 01:10:28,955
THE MINUTE YOU ACTUALLY TART

1941
01:10:28,955 --> 01:10:30,891
EXTRACTING FEATURES AND

1942
01:10:30,891 --> 01:10:32,559
COMBINING THEM AND MAKING IT

1943
01:10:32,559 --> 01:10:35,595
MEANINGFUL TO A CLINICIAN OR

1944
01:10:35,595 --> 01:10:37,297
RESEARCHER AT A POINT OF

1945
01:10:37,297 --> 01:10:39,766
INTERFACE, WE SEE BEHAVIORS

1946
01:10:39,766 --> 01:10:40,000
CHANGE.

1947
01:10:40,000 --> 01:10:40,667
EVERYBODY COMPLAINS ABOUT

1948
01:10:40,667 --> 01:10:42,102
PUTTING DATA INTO EPIC,

1949
01:10:42,102 --> 01:10:44,371
CLINICIANS HATE IT ISSUES RIGHT,

1950
01:10:44,371 --> 01:10:45,572
BECAUSE THEY DON'T GET ANYTHING

1951
01:10:45,572 --> 01:10:46,239
BACK.

1952
01:10:46,239 --> 01:10:48,341
IMAGINE IF YOU CAN TELL A

1953
01:10:48,341 --> 01:10:49,643
CLINICIAN IF YOU PUT YOUR DATA

1954
01:10:49,643 --> 01:10:51,912
IN HERE THIS WAY, CAN YOU

1955
01:10:51,912 --> 01:10:53,647
IMMEDIATELY SEE YOUR PATIENT

1956
01:10:53,647 --> 01:10:55,148
CONTEXT OF ALL OTHER PATIENTS.

1957
01:10:55,148 --> 01:10:56,316
CLINICIANS WANT TO HELP THEM

1958
01:10:56,316 --> 01:10:58,718
PEASHTS ISSUES THE FEEDBACK LOOP

1959
01:10:58,718 --> 01:11:03,123
FOR ADOPTION IS MISSING AND

1960
01:11:03,123 --> 01:11:07,427
THAT'S 1 HYPOTHESIS THAT I SAY

1961
01:11:07,427 --> 01:11:12,065
WE'VE SEEN EMERGE.

1962
01:11:12,065 --> 01:11:13,633
>> YEAH, SURE, REACT.

1963
01:11:13,633 --> 01:11:15,168
>> I WANT TO COME BACK TO
THE

1964
01:11:15,168 --> 01:11:18,438
FACT THAT GENOMICS IS QUITE

1965
01:11:18,438 --> 01:11:20,240
ADVANCED COMPARED TO OTHER

1966
01:11:20,240 --> 01:11:21,675
RESEARCH FIELDS FOR STANDARDS

1967
01:11:21,675 --> 01:11:23,143
THAT CAN BE USED IN BIOMEDICAL

1968
01:11:23,143 --> 01:11:26,112
RESEARCH SO I JUST WANT TO

1969
01:11:26,112 --> 01:11:29,249
MENTION PROBABLY 1 OF THE

1970
01:11:29,249 --> 01:11:30,717
STANDARDS, 1 OF THE RESEARCH

1971
01:11:30,717 --> 01:11:31,751
ORGANIZATIONS THAT REALLY, I

1972
01:11:31,751 --> 01:11:33,653
THINK WE'RE QUITE SUCCESSFUL IN

1973
01:11:33,653 --> 01:11:37,324
REALLY BRINGING THE COMMUNITY

1974
01:11:37,324 --> 01:11:41,828
TOGETHER IS THE GA FOR GH,

1975
01:11:41,828 --> 01:11:43,430
GOINGAL ALLIANCE FOR GENOMICS

1976
01:11:43,430 --> 01:11:44,030
AND HEALTH.

1977
01:11:44,030 --> 01:11:46,233
WHY WAS THAT SUCCESSFUL?

1978
01:11:46,233 --> 01:11:48,068
BECAUSE THEY CREATED A COMMUNITY

1979
01:11:48,068 --> 01:11:48,902
OF PARTIES THAT UNDERSTOOD THE

1980
01:11:48,902 --> 01:11:51,838
MISSION OF THE VALUE OF THE

1981
01:11:51,838 --> 01:11:54,274
STANDARDS AND COMMUNITY-DRIVEN

1982
01:11:54,274 --> 01:11:57,110
NOT MANDATES FROM THE NIH REALLY

1983
01:11:57,110 --> 01:11:58,011
ESTABLISHED THIS COMMUNITY OF

1984
01:11:58,011 --> 01:11:59,212
PEOPLE ACROSS THE WORLD THAT

1985
01:11:59,212 --> 01:12:01,348
WANTS TO COME TOGETHER TO

1986
01:12:01,348 --> 01:12:03,416
UNDERSTAND IMPORTANCE OF HAVING

1987
01:12:03,416 --> 01:12:05,952
STANDARDS FOR SHARING GENOMICS

1988
01:12:05,952 --> 01:12:08,555
DATA, ALSO FOR HEALTHCARE

1989
01:12:08,555 --> 01:12:08,889
PURPOSES.

1990
01:12:08,889 --> 01:12:10,657
SO YOU KNOW TO THE EXTENT THAT

1991
01:12:10,657 --> 01:12:13,693
SUCH A COMMUNITY CAN BE

1992
01:12:13,693 --> 01:12:14,461
ESTABLISHED FOR YOUR RESEARCH

1993
01:12:14,461 --> 01:12:16,029
COMMUNITY, I THINK THAT IS A

1994
01:12:16,029 --> 01:12:19,366
GREAT MODEL TO FOLLOW.

1995
01:12:19,366 --> 01:12:21,601
>> I WILL ADD 1 OTHER

1996
01:12:21,601 --> 01:12:22,269
COMMENT--NNO, NO, PLEASE.

1997
01:12:22,269 --> 01:12:25,772
NTHE 

1998
01:12:25,772 --> 01:12:26,006
--

1999
01:12:26,006 --> 01:12:28,308
>> THE OTHER THING YOU SEE
IN

2000
01:12:28,308 --> 01:12:29,609
THE COMMERCIAL VENDORS PROVIDING

2001
01:12:29,609 --> 01:12:31,878
THOSE FRAMEWORK ANDS YOU KNOW

2002
01:12:31,878 --> 01:12:36,483
WE'VE SEEN IN WAYS THAT'S BEEN

2003
01:12:36,483 --> 01:12:37,951
REMARKABLE AROUND FHIR RESOURCE

2004
01:12:37,951 --> 01:12:40,921
IS THAT THE MINUTE THE FEDERAL

2005
01:12:40,921 --> 01:12:45,358
FRAMEWORK SAID THIS IS A

2006
01:12:45,358 --> 01:12:46,626
STANDARD, COMMERCIAL ENTITIES

2007
01:12:46,626 --> 01:12:49,062
BEGAN ADOPTING AND DEVELOPING

2008
01:12:49,062 --> 01:12:50,564
AGAINST IT MUCH, MUCH FASTER

2009
01:12:50,564 --> 01:12:52,299
THAN RESEARCH OR EACH HOSPITAL

2010
01:12:52,299 --> 01:12:55,068
SYSTEMS, LIKE AMAZON AND GOOGLE

2011
01:12:55,068 --> 01:12:57,571
AND MICROSOFT, SO THAT'S THE

2012
01:12:57,571 --> 01:13:03,810
OTHER ANGLE IS THAT I THINK AS

2013
01:13:03,810 --> 01:13:05,512
VALENTINA, MENTIONED, CAN YOU

2014
01:13:05,512 --> 01:13:08,081
PAIR ESSENTIALLY A BODY THAT HAS

2015
01:13:08,081 --> 01:13:10,550
SOME AUTHORITY AROUND RESOURCES

2016
01:13:10,550 --> 01:13:14,988
WITH COMMUNITY FEEDBACK LOOP OF

2017
01:13:14,988 --> 01:13:16,256
EMPOWERMENT.

2018
01:13:16,256 --> 01:13:19,859
THOSE CAN ACTUALLY DRIVE

2019
01:13:19,859 --> 01:13:20,293
PRACTICE.

2020
01:13:20,293 --> 01:13:21,261
>> MY COMMENT WAS RIGHT
ALIGNED

2021
01:13:21,261 --> 01:13:23,096
WITH THAT AND I WAS NOT

2022
01:13:23,096 --> 01:13:25,999
ANTICIPATING TO HEAR ABOUT FHIR

2023
01:13:25,999 --> 01:13:27,233
TODAY BUT I'M REALLY FLAD THAT

2024
01:13:27,233 --> 01:13:31,972
YOU BROUGHT IT UP.

2025
01:13:31,972 --> 01:13:34,274
MY UNDERSTANDING OF FHIR IS THAT

2026
01:13:34,274 --> 01:13:38,678
IT'S A DATA STANDARD FOR THE

2027
01:13:38,678 --> 01:13:40,213
SHARING TRANSMISSION OF IN MY

2028
01:13:40,213 --> 01:13:41,147
EXPERIENCE AT LEAST, CLINICAL

2029
01:13:41,147 --> 01:13:43,350
DATA IF YOU HAVE AN AUDIOGRAM TO

2030
01:13:43,350 --> 01:13:45,185
SUBMIT THAT TO YOUR EPIC

2031
01:13:45,185 --> 01:13:48,054
DATABASE IT HAS TO FOLLOW A

2032
01:13:48,054 --> 01:13:50,757
FHRIERKS R PROTOCOL AND ADAM

2033
01:13:50,757 --> 01:13:52,258
PLEASE CORRECT, THE FRAME SHIFT

2034
01:13:52,258 --> 01:13:56,863
FOR ME IS VIEWING THAT STANDARD

2035
01:13:56,863 --> 01:13:59,733
IN THE RESEARCH FIELD, EXTENDING

2036
01:13:59,733 --> 01:14:01,067
IT BEYOND CLINICAL CARE, I THINK

2037
01:14:01,067 --> 01:14:03,103
THISIA A LOT OF OPPORTUNITIES.

2038
01:14:03,103 --> 01:14:06,172
NYEAH, THIS IS A KEY MOMENT IN

2039
01:14:06,172 --> 01:14:08,274
TIME, THEY ARE DEVELOPED FOR THE

2040
01:14:08,274 --> 01:14:09,776
CLINICAL FRAMEWORK, THE RESEARCH

2041
01:14:09,776 --> 01:14:11,645
COMMITTEE HAS HAD A VERY

2042
01:14:11,645 --> 01:14:15,582
EMPOWERED CONTEXT FOR CLENICAL

2043
01:14:15,582 --> 01:14:19,019
DATA MODELING THROUGH ODESSY OR

2044
01:14:19,019 --> 01:14:20,186
OMOP BASED REPRESENTATION OF

2045
01:14:20,186 --> 01:14:22,722
DATA, THE KEY PART HOW TO MARRY

2046
01:14:22,722 --> 01:14:23,790
THOSE 2 OPPORTUNITIES ISSUES THE

2047
01:14:23,790 --> 01:14:25,659
RESOURCES THAT ARE DEVELOPED FOR

2048
01:14:25,659 --> 01:14:27,160
RESEARCH, USE FOR CLINICAL DATA

2049
01:14:27,160 --> 01:14:30,163
HOW DO WE HARNESS THIS MOMENT IN

2050
01:14:30,163 --> 01:14:32,499
TIME WHERE THERE'S A MANDATE IN

2051
01:14:32,499 --> 01:14:34,000
TOOLING AND A KEY PART OF IT ARE

2052
01:14:34,000 --> 01:14:35,001
TO FRAME PEOPLE WHO ARE NOT

2053
01:14:35,001 --> 01:14:36,503
FAMILIAR WITH IT, THE MAIN

2054
01:14:36,503 --> 01:14:40,407
ADVANTAGE IS THAT THERE'S A

2055
01:14:40,407 --> 01:14:41,908
STANDARD SORT OF USB PORT THAT A

2056
01:14:41,908 --> 01:14:47,414
SYSTEM CAN CONNECT TO AND GET

2057
01:14:47,414 --> 01:14:49,249
THAT INFORMATION.

2058
01:14:49,249 --> 01:14:51,651
THERE'S AN ESTABLISHED

2059
01:14:51,651 --> 01:14:52,786
COMMUNICATION PORT ESSENTIALLY

2060
01:14:52,786 --> 01:14:55,288
INTO THE HEALTH DATA, DATA

2061
01:14:55,288 --> 01:14:56,856
ITSELF MAY STILL REQUIRE

2062
01:14:56,856 --> 01:14:58,124
ADDITIONAL MODELING OR OTHER

2063
01:14:58,124 --> 01:14:59,325
THINGS BUT AT LEAST YOU KNOW HOW

2064
01:14:59,325 --> 01:15:00,727
TO ASK FOR IT AND YOU KNOW WHAT

2065
01:15:00,727 --> 01:15:03,963
YOU'RE GOING TO GET, RIGHT AS A

2066
01:15:03,963 --> 01:15:06,700
FRAMEWORK AND THAT SEEMS SIMPLE,

2067
01:15:06,700 --> 01:15:08,468
BUT HALF THE TIME WITH WE GET

2068
01:15:08,468 --> 01:15:09,202
FILES FROM SOMEBODY, WE DON'T

2069
01:15:09,202 --> 01:15:10,704
KNOW WHAT THEY ARE, WE DON'T

2070
01:15:10,704 --> 01:15:12,572
KNOW WHAT'S IN THEM, RIGHT?

2071
01:15:12,572 --> 01:15:15,909
DID IT INCLUDE WHAT I ASKED FOR

2072
01:15:15,909 --> 01:15:17,677
IN THAT'S A REAL BIG BARRIER

2073
01:15:17,677 --> 01:15:21,414
INTO THAT CONTEXT.

2074
01:15:21,414 --> 01:15:22,682
>> I JUST CAN'T RESIST
SAYING

2075
01:15:22,682 --> 01:15:23,783
THE GREAT THING ABOUT STANDARD

2076
01:15:23,783 --> 01:15:26,886
SYSTEM THAT THERE ARE SO MANY OF

2077
01:15:26,886 --> 01:15:27,520
THEM.

2078
01:15:27,520 --> 01:15:27,921
[LAUGHTER]

2079
01:15:27,921 --> 01:15:30,290
BUT THIS DISCUSSION, I THINK

2080
01:15:30,290 --> 01:15:32,659
CRYSTALLIZES AT LEAST

2081
01:15:32,659 --> 01:15:34,861
CONCEPTUALLY THAT SOMETHING THAT

2082
01:15:34,861 --> 01:15:36,830
NIDCD MIGHT DO ON ITS OWN OR

2083
01:15:36,830 --> 01:15:39,032
MAYBE IN PARTNERSHIP WITH OTHER

2084
01:15:39,032 --> 01:15:40,633
ORGANIZATIONS, I'M THINKING LIKE

2085
01:15:40,633 --> 01:15:42,135
THE NATIONAL ACADEMIES IS REALLY

2086
01:15:42,135 --> 01:15:44,571
TO HAVE IT CONVENING AROUND THIS

2087
01:15:44,571 --> 01:15:47,874
DATA STANDARDS TO FOSTER

2088
01:15:47,874 --> 01:15:48,708
INTEROPERATING GLOBALLY

2089
01:15:48,708 --> 01:15:49,909
RAIBILITY, FLUIDITY OF DATA TO

2090
01:15:49,909 --> 01:15:52,645
CLINICAL DATA I THINK THAT POINT

2091
01:15:52,645 --> 01:15:54,714
IS SPOT ON, JUST SOMETHING TO

2092
01:15:54,714 --> 01:15:56,382
CONSIDER AS WE MOVE ON HERE, SO

2093
01:15:56,382 --> 01:15:58,785
DID YOU WANT TO MAKE A COMMENT?

2094
01:15:58,785 --> 01:16:02,622
>> JUST ADD A LAYER HERE
TO THE

2095
01:16:02,622 --> 01:16:03,123
OPPORTUNITY.

2096
01:16:03,123 --> 01:16:06,326
YOU KNOW ASSESS AI READINESS OF

2097
01:16:06,326 --> 01:16:08,027
DATA, RIGHT, HOW CAN THE DATA

2098
01:16:08,027 --> 01:16:10,697
YOU CARE ABOUT BE POSITIONED YOU

2099
01:16:10,697 --> 01:16:13,099
KNOW FOR HARNESSING THESE NEW

2100
01:16:13,099 --> 01:16:13,433
TECHNOLOGIES?

2101
01:16:13,433 --> 01:16:14,400
YOU DON'T WANT TO MISS THAT

2102
01:16:14,400 --> 01:16:18,838
MOMENT IN TIME ESSENTIALLY.

2103
01:16:18,838 --> 01:16:20,573
>> I WANTED TO SHIFT GEARS
A BIT

2104
01:16:20,573 --> 01:16:22,675
AND THIS IS ALSO, YOU TOUCHED SO

2105
01:16:22,675 --> 01:16:23,843
MANY DIFFERENT TOPICS THAT ARE

2106
01:16:23,843 --> 01:16:26,479
RELEVANT TO THIS BUT 1 OF THE

2107
01:16:26,479 --> 01:16:27,680
TOPICS THAT WE ALL NEED TO THINK

2108
01:16:27,680 --> 01:16:31,785
ABOUT IS THE BIAS AND DATA,

2109
01:16:31,785 --> 01:16:34,254
BECAUSE ARE WE SEEING THE

2110
01:16:34,254 --> 01:16:35,688
DIVERSITY OF PATIENTS,

2111
01:16:35,688 --> 01:16:36,656
PARTICIPANTS CONTRIBUTING DATA

2112
01:16:36,656 --> 01:16:37,891
THAT WE 92 ED TO HAVE WHATEVER

2113
01:16:37,891 --> 01:16:40,293
WE'RE TALKING ABOUT HERE

2114
01:16:40,293 --> 01:16:42,762
APPLICABLE TO EVERYONE.

2115
01:16:42,762 --> 01:16:44,197
SO I WONDER IF ANY OF YOU WOULD

2116
01:16:44,197 --> 01:16:48,034
LIKE TO SPEAK TO SOME OF THE

2117
01:16:48,034 --> 01:16:50,370
CHALLENGES AND PARTICULARLY

2118
01:16:50,370 --> 01:16:51,638
IN--NOT JUST RACE ETHNICITY

2119
01:16:51,638 --> 01:16:53,840
CHALLENGES WHICH I'M SURE ARE

2120
01:16:53,840 --> 01:16:55,008
PARAMOUNT, BUT ALSO

2121
01:16:55,008 --> 01:16:56,276
DISABILITIES, AND MAKING SURE

2122
01:16:56,276 --> 01:16:58,044
THAT THOSE INDIVIDUALS ARE

2123
01:16:58,044 --> 01:17:01,414
REPRESENTED IN THE TYPES OF DATA

2124
01:17:01,414 --> 01:17:02,682
WE'RE TALKING ABOUT AND ANY

2125
01:17:02,682 --> 01:17:04,918
IDEAS ABOUT YOU HOW TO FOSTER

2126
01:17:04,918 --> 01:17:05,618
GREATER ENGAGEMENT WITH THE

2127
01:17:05,618 --> 01:17:07,987
COMMUNITIES THAT ARE LARGELY

2128
01:17:07,987 --> 01:17:11,891
ABSENT. 

2129
01:17:11,891 --> 01:17:13,193
ANY THOUGHTS.

2130
01:17:13,193 --> 01:17:14,060
IT'S CRITICALLY IMPORTANT.

2131
01:17:14,060 --> 01:17:15,862
I THINK WE ALL RECOGNIZE THAT

2132
01:17:15,862 --> 01:17:16,963
DIVERSITY IN OUR CLINICAL TRIALS

2133
01:17:16,963 --> 01:17:20,500
BOTH FROM THE NIH AS WELL AS THE

2134
01:17:20,500 --> 01:17:22,902
EXTRAMURAL COMMUNITIES IS SORELY

2135
01:17:22,902 --> 01:17:24,637
LACKING CAN WHAT I FIND EVEN

2136
01:17:24,637 --> 01:17:26,706
MORE CONCERNING IS THAT THERE'S

2137
01:17:26,706 --> 01:17:31,911
NO CLEAR GUIDANCE ON HOW TO

2138
01:17:31,911 --> 01:17:33,546
IMPROVE WHAT IS DIVERSITY, WHAT

2139
01:17:33,546 --> 01:17:35,481
IS A REPRESENTATIVE POPULATION,

2140
01:17:35,481 --> 01:17:38,751
WHEN IS A RARE DISEASE

2141
01:17:38,751 --> 01:17:40,620
IDENTIFIABLE IN ITS OWN RIGHT?

2142
01:17:40,620 --> 01:17:41,888
THESE ARE ALL OPEN QUESTIONS

2143
01:17:41,888 --> 01:17:44,290
THAT ARE OFTEN TIMES DECIDED ON

2144
01:17:44,290 --> 01:17:46,492
A CASE BY CASE BASIS WHICH MAKE

2145
01:17:46,492 --> 01:17:47,794
ITS MUCH HARDER TO IMPROVE.

2146
01:17:47,794 --> 01:17:49,996
I WILL TAKE THE OPPORTUNITY TO

2147
01:17:49,996 --> 01:17:52,298
HIGHLIGHT A WORKSHOP THAT WILL

2148
01:17:52,298 --> 01:17:53,166
BE HOSTING AT THE CLINICAL

2149
01:17:53,166 --> 01:17:56,102
CENTER AND I WOULD LOVE EVERYONE

2150
01:17:56,102 --> 01:17:58,571
HERE ASK ONLINE TO JOIN SPEAKING

2151
01:17:58,571 --> 01:18:00,340
DIRECTLY TO THIS TOPIC ON

2152
01:18:00,340 --> 01:18:05,578
DIVERSITY CAN CLINICAL TRIALS

2153
01:18:05,578 --> 01:18:06,145
BECAUSE IT'S CRITICALLY

2154
01:18:06,145 --> 01:18:13,519
IMPORTANT BUT WE HAVE A LONG WAY

2155
01:18:13,519 --> 01:18:13,853
TO GO.

2156
01:18:13,853 --> 01:18:15,755
>>  YEAH, I JUST WANT TO
COMMENT

2157
01:18:15,755 --> 01:18:18,391
ON THE MEANING OF THE WORD

2158
01:18:18,391 --> 01:18:19,959
DIVERSITY, AND HOW DO WE DEFEIGN

2159
01:18:19,959 --> 01:18:22,962
AND HOW DO WE STRATIFY THE

2160
01:18:22,962 --> 01:18:25,798
POPULATION TO MAKE SURE THAT THE

2161
01:18:25,798 --> 01:18:28,868
CLINICAL TRIAL THAT WE'RE DOING

2162
01:18:28,868 --> 01:18:30,069
IS REALLY REFLECTIVE OF THE

2163
01:18:30,069 --> 01:18:33,239
PHENOTYPE THAT WE WANT TO STUDY,

2164
01:18:33,239 --> 01:18:33,706
RIGHT?

2165
01:18:33,706 --> 01:18:35,942
AND IT'S AN ENCOURAGEMENT TO GO

2166
01:18:35,942 --> 01:18:38,111
BEYOND THE SOCIAL CONSTRUCTS

2167
01:18:38,111 --> 01:18:39,779
THAT WE TYPICALLY TALK ABOUT,

2168
01:18:39,779 --> 01:18:42,315
THE MORE TRYING TO THINK ABOUT

2169
01:18:42,315 --> 01:18:44,617
OTHER WAYS THAT ARE A PHENOTYPIC

2170
01:18:44,617 --> 01:18:46,653
STRATIFICATION OF THE PATIENT

2171
01:18:46,653 --> 01:18:48,688
POPULATION, THAT MAY BE BASED ON

2172
01:18:48,688 --> 01:18:51,424
GENO TYPE AND OTHER

2173
01:18:51,424 --> 01:18:52,258
CHARACTERISTICS.

2174
01:18:52,258 --> 01:18:54,160
I THINK THAT FOR SIMPLICITY

2175
01:18:54,160 --> 01:18:58,932
SOMETIMES, WE JUST FOLLOW

2176
01:18:58,932 --> 01:18:59,732
UNCERTAIN CATEGORIES AND I

2177
01:18:59,732 --> 01:19:02,669
REALLY THINK WE SHOULD BE

2178
01:19:02,669 --> 01:19:03,670
ENCOURAGED BY THE BIOMEDICAL

2179
01:19:03,670 --> 01:19:06,205
RESEARCH COMMUNITY TO GO BEYOND

2180
01:19:06,205 --> 01:19:08,508
THOSE GROUPINGS AND TO REALLY GO

2181
01:19:08,508 --> 01:19:11,277
DEEPER WITH A PHENOTYPE OF A

2182
01:19:11,277 --> 01:19:13,613
POPULATION THATNYS TO BE

2183
01:19:13,613 --> 01:19:16,215
RECRUITED AND AND THROUGH THE

2184
01:19:16,215 --> 01:19:17,250
CLINICAL TRIAL EFFORT, THAT'S

2185
01:19:17,250 --> 01:19:22,422
ALL I WANTED TO SAY.

2186
01:19:22,422 --> 01:19:26,092
>> WE ALSO THINK ABOUT
DIVERSITY

2187
01:19:26,092 --> 01:19:26,726
IN 2 FRAMEWORKS.

2188
01:19:26,726 --> 01:19:28,561
ONE WHICH IS NATURAL FOR US, I

2189
01:19:28,561 --> 01:19:31,531
THINK, THOSE OF US WHO ARE

2190
01:19:31,531 --> 01:19:34,400
STEEPED IN BIOLOGY AND MOLECULAR

2191
01:19:34,400 --> 01:19:37,070
CONTEXT WHICH HAS VALENTINA

2192
01:19:37,070 --> 01:19:38,938
MENTIONED HOW DO WE MAKE SURE

2193
01:19:38,938 --> 01:19:39,872
WE'RE ACTUALLY MEASURING THE

2194
01:19:39,872 --> 01:19:42,108
SPACE REQUIRED TO MEASURE TO

2195
01:19:42,108 --> 01:19:43,276
MAKE AN INTERPRETATION, LET

2196
01:19:43,276 --> 01:19:44,677
ALONE THE MORAL MANDATE OF

2197
01:19:44,677 --> 01:19:46,312
ADDRESSING THE NEED OF THOSE

2198
01:19:46,312 --> 01:19:48,214
REPRESENTED, BUT THE OTHER PART

2199
01:19:48,214 --> 01:19:50,817
WHICH I THINK WAS TRANSFORMATIVE

2200
01:19:50,817 --> 01:19:54,187
FOR ME, WAS WHEN I STARTED

2201
01:19:54,187 --> 01:19:56,956
READING PAPERS, THAT TREATED

2202
01:19:56,956 --> 01:19:58,458
OTHER VARIABLES OF THE

2203
01:19:58,458 --> 01:19:59,525
UNIVERSITY, FOR EXAMPLE, YOU

2204
01:19:59,525 --> 01:20:02,695
KNOW ACCESS TO HEALTHCARE, OR

2205
01:20:02,695 --> 01:20:06,833
SOCIOECONOMIC AT  STATUS AND THE

2206
01:20:06,833 --> 01:20:07,667
OUTCOMES THESE KIDS MIGHT HAVE

2207
01:20:07,667 --> 01:20:10,903
IF YOU HAVE A BRAIN TUMOR, ARE

2208
01:20:10,903 --> 01:20:12,939
THE DIFFERENCES LIKE IF YOU

2209
01:20:12,939 --> 01:20:17,010
PLOTTED IT ON A CAP LANMIER

2210
01:20:17,010 --> 01:20:18,277
CURVE FOR EXAMPLE WERE MUCH

2211
01:20:18,277 --> 01:20:19,812
LARGER DIFFERENCES THAN ANY GENE

2212
01:20:19,812 --> 01:20:24,617
WE EVER DISCOVERED, RIGHT, THAT

2213
01:20:24,617 --> 01:20:25,918
CAUSE DIFFERENCES IN THE TUMOR.

2214
01:20:25,918 --> 01:20:27,020
SO THE UNDERSTANDING THAT YOU

2215
01:20:27,020 --> 01:20:29,055
CAN HAVE OUTCOME MEASURES WHICH

2216
01:20:29,055 --> 01:20:34,927
WHAT WE CARE ABOUT IMPACTED BY

2217
01:20:34,927 --> 01:20:36,562
VARIABLES THAT ACTUALLY ARE

2218
01:20:36,562 --> 01:20:37,497
POTENTIALLY ADDRESSABLE IN WAYS

2219
01:20:37,497 --> 01:20:41,734
THAT ARE EASIER FROM A--I KNOW

2220
01:20:41,734 --> 01:20:43,436
HOW TO FIX IT TYPE OF FRAMEWORK

2221
01:20:43,436 --> 01:20:45,204
THAN A MODEL CITIZEN LEAKULAR 1

2222
01:20:45,204 --> 01:20:46,906
WHERE WE HAVE TO DEVELOP A NEW

2223
01:20:46,906 --> 01:20:49,442
DRUG AND RECOGNIZING THAT THAT

2224
01:20:49,442 --> 01:20:52,912
SIGNAL TO NOISE EXISTS IN THAT

2225
01:20:52,912 --> 01:20:55,214
ANALYSIS, I THINK IS INKRE

2226
01:20:55,214 --> 01:20:57,817
TINSIBLELY IMPORTANT ESPECIALLY

2227
01:20:57,817 --> 01:20:59,886
AS YOUR PHENOTYPES BECOME MORE

2228
01:20:59,886 --> 01:21:05,425
COMPLEXLY INFORMED BY MULTIPLE

2229
01:21:05,425 --> 01:21:06,759
GENE AND ENVIRONMENTAL CONTEXT,

2230
01:21:06,759 --> 01:21:08,561
RIGHT, AS A SETTING AND SO, I

2231
01:21:08,561 --> 01:21:10,396
WILL COME BACK TO WHAT I FOUND

2232
01:21:10,396 --> 01:21:11,264
MYSELF HAVING TO REMIND MYSELF

2233
01:21:11,264 --> 01:21:13,199
AND PEOPLE I WORK WITH, THAT WE

2234
01:21:13,199 --> 01:21:15,068
CAN'T FIX SOMETHING WE DON'T

2235
01:21:15,068 --> 01:21:17,036
MEASURE, RIGHT IN SO YOU HAVE TO

2236
01:21:17,036 --> 01:21:21,674
MEASURE IT AND INCORPORATE IT

2237
01:21:21,674 --> 01:21:22,742
INTO THE SETTING, THAT'S THE

2238
01:21:22,742 --> 01:21:24,844
KEY, I THINK BUT THINKING ABOUT

2239
01:21:24,844 --> 01:21:27,947
DIVERSITY IN THE 2 LENSES, THE

2240
01:21:27,947 --> 01:21:29,348
BIOLOGIC REPRESENTATIONAL 1 BUT

2241
01:21:29,348 --> 01:21:30,716
ADVERSITY OF VARIABLES CAN

2242
01:21:30,716 --> 01:21:32,085
ACTUALLY IMPACT THE END POINTS

2243
01:21:32,085 --> 01:21:33,519
AND ARE ALREADY KNOWN THAT I

2244
01:21:33,519 --> 01:21:34,821
IGNORED BECAUSE OF WHAT YOU'RE

2245
01:21:34,821 --> 01:21:38,624
MEASURING, YOU KNOW IN THE

2246
01:21:38,624 --> 01:21:38,891
CONTEXT.

2247
01:21:38,891 --> 01:21:42,662
>> LET ME FOLLOW UP ON
THAT,

2248
01:21:42,662 --> 01:21:44,764
FIRST, IN THE--IF YOU NO MATTER

2249
01:21:44,764 --> 01:21:48,201
HOW WE DEFINE DIVERSITY, I AGREE

2250
01:21:48,201 --> 01:21:51,170
IT'S A CRITICAL DEFINITION.

2251
01:21:51,170 --> 01:21:52,672
WE HAVE THE OPPORTUNITY AS

2252
01:21:52,672 --> 01:21:54,740
YOU'RE POINTING OUT ADAM THAT WE

2253
01:21:54,740 --> 01:22:00,146
CAN MEASURE MANY DIMENSIONS OF

2254
01:22:00,146 --> 01:22:01,414
DATA OR POPULATION, YET THE

2255
01:22:01,414 --> 01:22:02,949
RESEARCH COMMUNITY IS PRETTY

2256
01:22:02,949 --> 01:22:06,085
MONODIMENSIONAL IN THE WAY THAT

2257
01:22:06,085 --> 01:22:08,387
THEY THINK ABOUT RESEARCH,

2258
01:22:08,387 --> 01:22:11,124
MEANING THAT MOST LABS MAY BE

2259
01:22:11,124 --> 01:22:13,059
USE 1 OR 2 DATA TYPES OF

2260
01:22:13,059 --> 01:22:13,993
CLINICAL GENETIC OR SOMETHING

2261
01:22:13,993 --> 01:22:19,065
LIKE THAT, BUT IT'S A RARE

2262
01:22:19,065 --> 01:22:19,866
LABORATORY INVESTIGATOR GROUP

2263
01:22:19,866 --> 01:22:21,300
THAT USES MORE DIMENSIONALITYS

2264
01:22:21,300 --> 01:22:23,035
OF THE DAY, SO THE QUESTION I'M

2265
01:22:23,035 --> 01:22:24,403
REALLY GETTING AT IS, IN ORDER

2266
01:22:24,403 --> 01:22:28,641
TO GET THE FULL PICTURE OF THE

2267
01:22:28,641 --> 01:22:30,176
INDIVIDUAL, THE TRAJECTORY,

2268
01:22:30,176 --> 01:22:31,344
PREDICTIVE MODELS, OUTCOMES AS

2269
01:22:31,344 --> 01:22:32,745
PRECISION MEDICINE WOULD LIKE US

2270
01:22:32,745 --> 01:22:34,714
TO DO, HOW DO WE PREPARE THE

2271
01:22:34,714 --> 01:22:38,251
WORKFORCE TO ACTUALLY BE ABLE TO

2272
01:22:38,251 --> 01:22:39,652
HANDLE THE DIFFERENT DATA

2273
01:22:39,652 --> 01:22:39,886
STREAMS.

2274
01:22:39,886 --> 01:22:44,490
ONE ANSWER YOU SAY WELL, USE

2275
01:22:44,490 --> 01:22:45,224
CHATGPT, I'M PEEKING DPLIBLY,

2276
01:22:45,224 --> 01:22:48,828
BUT I DO THINK THAT THE

2277
01:22:48,828 --> 01:22:49,762
WORKFORCE OF RESEARCHER

2278
01:22:49,762 --> 01:22:51,063
WORKFORCE TODAY MAY NOT BE

2279
01:22:51,063 --> 01:22:52,698
PREPARED TO USE THE DAILY BASIS

2280
01:22:52,698 --> 01:22:56,335
THEA TYPES WE'RE TALK HAD

2281
01:22:56,335 --> 01:22:57,837
THE--DATA TYPES WE'RE TALKING

2282
01:22:57,837 --> 01:22:58,471
ABOUT HERE.

2283
01:22:58,471 --> 01:23:00,640
>> I'M ASKING, IS THERE A
WAY WE

2284
01:23:00,640 --> 01:23:00,873
CAN--

2285
01:23:00,873 --> 01:23:03,743
>> HOW ARE WE TRYING TO DO
THIS

2286
01:23:03,743 --> 01:23:05,545
AT LEAST.

2287
01:23:05,545 --> 01:23:09,248
YOU KNOW SO WE LEANED IN HEAVILY

2288
01:23:09,248 --> 01:23:09,916
INTO MULTIMOWAL FRAMEWORKS WITH

2289
01:23:09,916 --> 01:23:11,517
THE ARGUE AM WHICH I THINK IS

2290
01:23:11,517 --> 01:23:12,685
UNDERNEATH WHAT YOU'RE SAYING

2291
01:23:12,685 --> 01:23:18,691
WHICH IS RECOGNIZING THAT EACH

2292
01:23:18,691 --> 01:23:21,427
DATA LAYER ACTUALLY ADDS

2293
01:23:21,427 --> 01:23:23,162
INFORMATION TO THE ANALYSIS, I

2294
01:23:23,162 --> 01:23:26,566
THINK INVESTIGATORS DON'T KNOW

2295
01:23:26,566 --> 01:23:27,733
THAT FULLY AND DON'T HAVE THE

2296
01:23:27,733 --> 01:23:29,502
TOOLS TO ASSESS THAT FULLY.

2297
01:23:29,502 --> 01:23:32,205
THE MINUTE I SHOW A CLINICIAN,

2298
01:23:32,205 --> 01:23:37,443
THAT IF I CLUSTER THESE PATIENTS

2299
01:23:37,443 --> 01:23:39,478
USING 5 MODALITIES, AND 2,

2300
01:23:39,478 --> 01:23:42,548
SUDDENLY YOU HAVE 5 GROUPS OF

2301
01:23:42,548 --> 01:23:43,716
PATIENTS, THEY INTINCTUALLY

2302
01:23:43,716 --> 01:23:44,550
START ASKING QUESTIONS, WHAT'S

2303
01:23:44,550 --> 01:23:45,518
DIFFERENCE BETWEEN THIS GROUP

2304
01:23:45,518 --> 01:23:46,152
AND THAT GROUP.

2305
01:23:46,152 --> 01:23:48,421
HAVE I SEEN SOMETHING THAT I'VE

2306
01:23:48,421 --> 01:23:48,888
MISSED.

2307
01:23:48,888 --> 01:23:50,623
SO AGAIN, I THINK THERE'S A

2308
01:23:50,623 --> 01:23:51,891
FEEDBACK LOOP THAT YOU NEED TO

2309
01:23:51,891 --> 01:23:54,126
EMPOWER AND IT'S THE COMBINATION

2310
01:23:54,126 --> 01:23:57,997
OF TOOLING IN THAT SETTING, I'VE

2311
01:23:57,997 --> 01:23:58,965
SEEN MULTIMODAL DATA BEING

2312
01:23:58,965 --> 01:24:00,700
INTERSECT INDEED WAYS THAT

2313
01:24:00,700 --> 01:24:03,002
WASN'T MEANINGFUL SO THAT

2314
01:24:03,002 --> 01:24:04,704
ADOPTION FRAMEWORK AND

2315
01:24:04,704 --> 01:24:07,974
INCENTIVES ARE NOT THERE BUT THE

2316
01:24:07,974 --> 01:24:09,242
MINUTE YOU INCENTIVIZE

2317
01:24:09,242 --> 01:24:11,110
INTERPRETATION ASK MULTIMODAL

2318
01:24:11,110 --> 01:24:12,011
ANALYTICS AND UNVEILS SOMETHING

2319
01:24:12,011 --> 01:24:13,746
THAT'S DIFFERENT OR UNEXPECTED

2320
01:24:13,746 --> 01:24:15,881
OR EVEN CONFIRMS EVEN, YOU SEE

2321
01:24:15,881 --> 01:24:19,285
INTENSE INTEREST, YOU KNOW IN

2322
01:24:19,285 --> 01:24:20,753
THAT CONTEXT TO MOVE FORWARD, SO

2323
01:24:20,753 --> 01:24:22,688
PARTLY, I THINK IT'S TOOLING,

2324
01:24:22,688 --> 01:24:29,829
THE OTHER I THINK IS STILL IF

2325
01:24:29,829 --> 01:24:31,364
YOU MENTIONED AI 5 YEARS AGO,

2326
01:24:31,364 --> 01:24:33,099
PEOPLE WOULD ROLL THEIR EYES, 3

2327
01:24:33,099 --> 01:24:34,300
YEARS AGO, PEOPLE WOULD ROLL

2328
01:24:34,300 --> 01:24:38,571
THEIR EYES, I THINK NOW BECAUSE

2329
01:24:38,571 --> 01:24:41,007
IT'S A BIT MORE SPRENSIAL

2330
01:24:41,007 --> 01:24:42,375
BECAUSE PEOPLE HAVE GONE ON,

2331
01:24:42,375 --> 01:24:43,909
IT'S WEIRD AND DIFFERENT, THAT'S

2332
01:24:43,909 --> 01:24:45,077
THE OTHER OPPORTUNITY THAT'S

2333
01:24:45,077 --> 01:24:47,613
BEEN MISSING IS THAT, YOU FIGURE

2334
01:24:47,613 --> 01:24:52,518
THE PROMISE OF BIG DATA IN AI

2335
01:24:52,518 --> 01:24:54,387
AND ANALYTICS HAS NOT REALLY

2336
01:24:54,387 --> 01:24:57,123
COME TO HEALTHCARE YET.

2337
01:24:57,123 --> 01:25:00,826
AND IN MANY WAYS HEALTHCARE HAS

2338
01:25:00,826 --> 01:25:02,028
NOT RECOGNIZED, MOST HOSPITAL

2339
01:25:02,028 --> 01:25:03,996
SYSTEMS AND I SAY THIS FAIRLY

2340
01:25:03,996 --> 01:25:05,398
OFTEN, HAVE NOT RECOGNIZE THAD

2341
01:25:05,398 --> 01:25:06,766
THEY'RE BIG DATA COMPANIES AND

2342
01:25:06,766 --> 01:25:08,501
HOW TO THINK ABOUT THEIR

2343
01:25:08,501 --> 01:25:09,802
INFRASTRUCTURE OF A BIG DATA

2344
01:25:09,802 --> 01:25:11,904
COMPANY FROM AN ENGINEERING

2345
01:25:11,904 --> 01:25:12,772
PERSPECTIVE AND TOOLING

2346
01:25:12,772 --> 01:25:13,839
PERSPECTIVE AS CONTEXT.

2347
01:25:13,839 --> 01:25:15,308
DEFINITELY TOO HARD FOR A SINGLE

2348
01:25:15,308 --> 01:25:17,276
HUMAN TO THINK ABOUT.

2349
01:25:17,276 --> 01:25:18,744
>>  I THINK JOSH WOULD
DISAFRO

2350
01:25:18,744 --> 01:25:19,078
WITH YOU.

2351
01:25:19,078 --> 01:25:22,014
HE DOES THAT IN THE CLENNIC ALL

2352
01:25:22,014 --> 01:25:22,515
THE TIME.

2353
01:25:22,515 --> 01:25:23,949
SO I MEAN, I THINK THAT'S WHAT

2354
01:25:23,949 --> 01:25:26,285
YOU WERE SAYING EARLIER IS THAT

2355
01:25:26,285 --> 01:25:31,357
AS HUMANS WE GATHER INFORMATION

2356
01:25:31,357 --> 01:25:33,125
INTUITIVELY TO IN DEGREE AND

2357
01:25:33,125 --> 01:25:34,827
CREATE OUR OWN MODELS BUT

2358
01:25:34,827 --> 01:25:36,829
RESEARCHERS DON'T DO IT THAT

2359
01:25:36,829 --> 01:25:37,330
WAY.

2360
01:25:37,330 --> 01:25:38,431
>> MY FAVORITE
NEUROSURGEON ASK

2361
01:25:38,431 --> 01:25:40,766
LOOK AT AN MRI AND SAY, I KNOW

2362
01:25:40,766 --> 01:25:44,370
I'VE SEEN THIS BEFORE.

2363
01:25:44,370 --> 01:25:45,171
>> YEAH.

2364
01:25:45,171 --> 01:25:52,178
DID YOU WANT TO ADDRESS IT?

2365
01:25:52,178 --> 01:25:54,113
>> YEAH, SO--THE PROBLEM
OF

2366
01:25:54,113 --> 01:25:55,715
MULTIPLE MODALITY DATA AND HOW

2367
01:25:55,715 --> 01:25:56,749
TO EXTRACT INFORMATION FROM IT,

2368
01:25:56,749 --> 01:26:01,320
IT GOES BACK TO THE CLASSICAL

2369
01:26:01,320 --> 01:26:02,488
DATA INTEGRATION ISSUE WHICH YOU

2370
01:26:02,488 --> 01:26:06,859
KNOW DATA SCIENTISTS HAVE BEEN

2371
01:26:06,859 --> 01:26:09,161
DEALING WITH SINCE BIOMEDICAL

2372
01:26:09,161 --> 01:26:12,965
RESEARCH BECAME A BIG DATA

2373
01:26:12,965 --> 01:26:13,366
RESEARCH FIELD.

2374
01:26:13,366 --> 01:26:16,001
SO HOW TO DO THAT, CAN YOU DO IT

2375
01:26:16,001 --> 01:26:16,869
DIFFERENT LAYERS, RIGHT IN YOU

2376
01:26:16,869 --> 01:26:18,671
CAN JUST PUT THE DATA WITH

2377
01:26:18,671 --> 01:26:19,805
DIFFERENT DATA TYPES INTO THE

2378
01:26:19,805 --> 01:26:21,307
RESOURCE AND SAY IT'S INTEGRATED

2379
01:26:21,307 --> 01:26:22,508
WHICH WE KNOW IT'S NOT BUT AT

2380
01:26:22,508 --> 01:26:25,878
LEAST IT IS IN 1 PLACE.

2381
01:26:25,878 --> 01:26:28,948
OR CAN YOU BE LITTLE BIT MORE

2382
01:26:28,948 --> 01:26:31,517
SOPHISTICATED WHICH IS USE

2383
01:26:31,517 --> 01:26:32,451
STATISTICAL METHODS, AI, METHODS

2384
01:26:32,451 --> 01:26:35,788
AND SO ON, AND TRY TO EXTRACT

2385
01:26:35,788 --> 01:26:36,822
INFORMATION OUT OF IT.

2386
01:26:36,822 --> 01:26:38,591
SO IT DPZ BACK TO WORKFORCE

2387
01:26:38,591 --> 01:26:42,561
DEVELOPMENT, HOW DO YOU GET TO

2388
01:26:42,561 --> 01:26:44,797
THIS, YOU KNOW BIG ENOUGH

2389
01:26:44,797 --> 01:26:46,365
WORKFORCE OF COMPUTATIONAL

2390
01:26:46,365 --> 01:26:47,366
MODELERS, PEOPLE THAT KNOW HOW

2391
01:26:47,366 --> 01:26:54,206
TO TRAIN AND USE THIS AI MODELS

2392
01:26:54,206 --> 01:26:55,274
TO EXTRACT THE INFORMATION YOU

2393
01:26:55,274 --> 01:26:55,608
NEED.

2394
01:26:55,608 --> 01:26:58,577
SO IT GOES BACK TO HOW DO YOU

2395
01:26:58,577 --> 01:26:59,979
HAVE ENOUGH PEOPLE, THAT ARE

2396
01:26:59,979 --> 01:27:01,747
GOING TO STEM SCIENCES AND HOW

2397
01:27:01,747 --> 01:27:07,686
DO YOU CREATE ENOUGH PEOPLE EVEN

2398
01:27:07,686 --> 01:27:09,588
STARTING FROM K12 SCHOOL ENGEAJ

2399
01:27:09,588 --> 01:27:11,524
IN THIS TYPE OF ACTIVITY AND NOT

2400
01:27:11,524 --> 01:27:13,993
BE SCARED TO IT SO UNFORTUNATELY

2401
01:27:13,993 --> 01:27:16,128
THAT'S HOW--I THINK THE PROBLEM

2402
01:27:16,128 --> 01:27:17,296
STARTS MANY YEARS BEFORE IT,

2403
01:27:17,296 --> 01:27:23,169
PEOPLE GO TO MEDICAL SCHOOL.

2404
01:27:23,169 --> 01:27:24,136
>> ONE COMMENT ON THE
SHARED

2405
01:27:24,136 --> 01:27:27,773
EXPERIENCE, WE DID KNOWA

2406
01:27:27,773 --> 01:27:28,841
EXPERIMENT OF HANDLING DATA TO

2407
01:27:28,841 --> 01:27:31,510
AMERICAN AIRLINES AND ENGINEERS,

2408
01:27:31,510 --> 01:27:33,779
THEY DIDN'T KNOW--THEY THEY HAD

2409
01:27:33,779 --> 01:27:36,549
FORGOTTEN ALL THEIR NIEJT GRADE

2410
01:27:36,549 --> 01:27:37,850
BIOLOGY, ALL WE DID WAS HAND

2411
01:27:37,850 --> 01:27:39,985
THEM SHEETS AND ROWS OF

2412
01:27:39,985 --> 01:27:40,820
MOLECULAR DATA.

2413
01:27:40,820 --> 01:27:41,420
THEY BROUGHT DIFFERENT

2414
01:27:41,420 --> 01:27:42,521
TECHNIQUES THAT THEY USE TO

2415
01:27:42,521 --> 01:27:44,123
PREDICT WHEN AN AIRPLANE'S GOING

2416
01:27:44,123 --> 01:27:45,324
TO BE A CERTAIN PLACE OR IT'S

2417
01:27:45,324 --> 01:27:47,026
GOING TO BE THERE, COMPLETELY

2418
01:27:47,026 --> 01:27:48,127
DNCH THAN WE WOULD HAVE EVER

2419
01:27:48,127 --> 01:27:50,396
THOUGHT OF BUT THEY COULD CREATE

2420
01:27:50,396 --> 01:27:52,031
THE EXACT SAME CLASSIFIED TUMOR

2421
01:27:52,031 --> 01:27:54,200
TYPES THAT WE HAD DONE.

2422
01:27:54,200 --> 01:27:56,836
SO I THINK THAT'S THE OTHER

2423
01:27:56,836 --> 01:27:59,171
OPPORTUNITY IS CROSS DISCIPLINE

2424
01:27:59,171 --> 01:27:59,538
ANALYTICS.

2425
01:27:59,538 --> 01:28:03,976
I MENTIONED WEATHER, RIGHT?

2426
01:28:03,976 --> 01:28:05,177
FINANCE IS AMAZING 3 GOOD AT

2427
01:28:05,177 --> 01:28:07,713
THIS, IF YOU WANT TO SEE

2428
01:28:07,713 --> 01:28:09,849
REALTIME ANALYTICS, FINANCE IS

2429
01:28:09,849 --> 01:28:11,383
WHERE YOU SEE REALTIME ANALYTICS

2430
01:28:11,383 --> 01:28:11,984
AT SCALE.

2431
01:28:11,984 --> 01:28:13,919
SO THAT'S THE OTHER OPPORTUNITY

2432
01:28:13,919 --> 01:28:18,824
TO THINK ABOUT IS, MULTIMODAL

2433
01:28:18,824 --> 01:28:24,096
ANALYTICS THAT HARNESS SHARED

2434
01:28:24,096 --> 01:28:24,396
APPROACHES.

2435
01:28:24,396 --> 01:28:25,598
>> I COMPLETELY AGROW AND
I

2436
01:28:25,598 --> 01:28:27,333
WOULD JUST ADD THAT WE NEED TO

2437
01:28:27,333 --> 01:28:29,401
LOOK NOT ONLY OUTSIDE OF OUR OWN

2438
01:28:29,401 --> 01:28:31,637
FIELDS OUTSIDE OF HEALTHCARE BUT

2439
01:28:31,637 --> 01:28:33,439
WITHIN, AND CLINICALLY WE ARE

2440
01:28:33,439 --> 01:28:35,674
WAY TOO SILOED IN OUR OWN

2441
01:28:35,674 --> 01:28:37,409
SUBSPECIALTIES AND I THINK FROM

2442
01:28:37,409 --> 01:28:40,913
A DATA STANDPOINT THE SAME HOLDS

2443
01:28:40,913 --> 01:28:41,380
TRUE.

2444
01:28:41,380 --> 01:28:42,448
THE REPRESENTATION ON THIS PANEL

2445
01:28:42,448 --> 01:28:43,716
SPEAKS TO THE IMPORTANCE OF

2446
01:28:43,716 --> 01:28:45,784
BREAKING DOWN THESE BARRIERS.

2447
01:28:45,784 --> 01:28:51,390
WE DON'T NEED TO RECREATE DEN

2448
01:28:51,390 --> 01:28:52,691
DIFFERENT DATA SOLUTIONS, WE CAN

2449
01:28:52,691 --> 01:28:58,531
INTEGRATE AND LEARN FROM EACH

2450
01:28:58,531 --> 01:28:58,831
OTHER.

2451
01:28:58,831 --> 01:28:59,164
>> DPRAIT.

2452
01:28:59,164 --> 01:29:00,533
THAT WAS A FREIGHT RESPONSE TO

2453
01:29:00,533 --> 01:29:01,967
THAT LAST QUESTION EMPLOY I KNOW

2454
01:29:01,967 --> 01:29:04,770
WE'RE AT TIME, I WANT TO TAKE

2455
01:29:04,770 --> 01:29:06,772
60-SECONDS TO REFLECT ON SOME

2456
01:29:06,772 --> 01:29:08,240
HEAD LINES BECAUSE THAT'S ALL WE

2457
01:29:08,240 --> 01:29:09,875
HAVE TIME FOR, THINGS THAT I

2458
01:29:09,875 --> 01:29:12,077
HEARD BOTH THROUGH ADAM'S

2459
01:29:12,077 --> 01:29:12,912
PRESENTATION AND THE PANEL

2460
01:29:12,912 --> 01:29:13,946
DISCUSSION.

2461
01:29:13,946 --> 01:29:15,781
THE FIRST IS THAT WE SHOULD NOT

2462
01:29:15,781 --> 01:29:16,749
UNDERESTIMATE THE POWER OF

2463
01:29:16,749 --> 01:29:18,918
SHARING DATA AND LEVELS INCREASE

2464
01:29:18,918 --> 01:29:20,119
RAMMING THE INVESTMENTS THAT ANY

2465
01:29:20,119 --> 01:29:21,186
1 GROUP MAKES TO SHARE THEIR

2466
01:29:21,186 --> 01:29:24,156
DATA WITH THE OTHER AND THE

2467
01:29:24,156 --> 01:29:25,190
AMPLIFICATION THAT OCCURS IN

2468
01:29:25,190 --> 01:29:26,125
SCIENCE AND IN ORDER TO MAKE

2469
01:29:26,125 --> 01:29:29,461
THAT HAPPEN, WE HAVE TO BE

2470
01:29:29,461 --> 01:29:30,930
TRANSPARENT WITH OUR PARTICIPANT

2471
01:29:30,930 --> 01:29:33,332
AND PATIENT COMMUNITY SO THEY

2472
01:29:33,332 --> 01:29:35,935
UNDERSTAND HOW THEIR DATA IS

2473
01:29:35,935 --> 01:29:37,703
BEING USED AND CLEARLY THE

2474
01:29:37,703 --> 01:29:39,972
BENEFITS THAT BEING COME FROM

2475
01:29:39,972 --> 01:29:40,205
IT.

2476
01:29:40,205 --> 01:29:43,175
WE NEED TO AS A COMMUNITY I

2477
01:29:43,175 --> 01:29:44,476
THINK MAXIMIZE DIVERSITY NOT

2478
01:29:44,476 --> 01:29:46,078
ONLY OF OUR PARTICIPANT AND

2479
01:29:46,078 --> 01:29:47,179
PATIENT POPULATIONS THAT ARE

2480
01:29:47,179 --> 01:29:48,814
CONTRIBUTING THEIR DATA TO

2481
01:29:48,814 --> 01:29:50,950
RESEARCH, BUT THE DIVERSITY OF

2482
01:29:50,950 --> 01:29:52,151
THE LENSES OF EXPERT ANDS

2483
01:29:52,151 --> 01:29:53,252
RESEARCHERS THAT ARE LOOKING AT

2484
01:29:53,252 --> 01:29:55,220
THE DATA SO THAT WE CAN MACK

2485
01:29:55,220 --> 01:29:58,958
MYSELF THE QUESTIONS THAT

2486
01:29:58,958 --> 01:30:01,760
ARE--MAXIMIZE THE QUESTIONS THAT

2487
01:30:01,760 --> 01:30:04,763
ARE ASKED AND INFORMATION

2488
01:30:04,763 --> 01:30:05,030
ACHIEVED.

2489
01:30:05,030 --> 01:30:06,465
LONGITUDINALLITY IS IMPORTANT

2490
01:30:06,465 --> 01:30:11,837
AND TRAJECTORIES ARE GOING TO BE

2491
01:30:11,837 --> 01:30:15,074
PROYECTED SO THERE'S AN OBVIOUS

2492
01:30:15,074 --> 01:30:16,442
NEED FOR STANDARDS DISCUSSED ON

2493
01:30:16,442 --> 01:30:17,676
DIFFERENT LEVELSAs WELL AS

2494
01:30:17,676 --> 01:30:19,311
TOOLS TO MAKE THE DATA

2495
01:30:19,311 --> 01:30:20,713
APPROACHABLE BY EACH THE MOST

2496
01:30:20,713 --> 01:30:22,181
NOVICE OF RESEARCHERS,

2497
01:30:22,181 --> 01:30:25,017
COMMUNITY, PERHAPS GOING BACK TO

2498
01:30:25,017 --> 01:30:25,551
STEM.

2499
01:30:25,551 --> 01:30:27,152
EARLY, JUST EARLIER IN THE

2500
01:30:27,152 --> 01:30:28,988
EDUCATIONAL PROCESS, THE BETTER

2501
01:30:28,988 --> 01:30:31,490
OFF, THE FUTURE WORKFORCE WILL

2502
01:30:31,490 --> 01:30:34,159
BE AND THEN, NOT LASTLY BUT

2503
01:30:34,159 --> 01:30:35,361
CERTAINLY, 1 OF THE THEMES THAT

2504
01:30:35,361 --> 01:30:37,363
CAME UP JUST IN THE LAST FEW

2505
01:30:37,363 --> 01:30:38,664
MINUTES OF THIS DISCUSSION IS

2506
01:30:38,664 --> 01:30:40,933
THAT IT'S A TEAM SPORT, AND WHAT

2507
01:30:40,933 --> 01:30:43,035
THAT REALLY MEAN SYSTEM THAT

2508
01:30:43,035 --> 01:30:44,570
CROSS DISCIPLINARY TEAMS ARE

2509
01:30:44,570 --> 01:30:47,306
REALLY GOING TO ACCELERATE THE

2510
01:30:47,306 --> 01:30:48,374
RESEARCH AND 27 INSTITUTES AND

2511
01:30:48,374 --> 01:30:49,908
CENTERS HAVE TO FIGURE OUT HOW

2512
01:30:49,908 --> 01:30:52,511
TO BREAK DOWN THE SILOS TO MAKE

2513
01:30:52,511 --> 01:30:54,146
YOU KNOW PRECISION MEDICINE A

2514
01:30:54,146 --> 01:30:56,448
REALITY NOT ONLY FOR NIDCD BUT

2515
01:30:56,448 --> 01:30:57,883
FOR THE ENTIRETY OF NE H, SO

2516
01:30:57,883 --> 01:31:01,053
WITH THAT I WILL TURN IT BACK TO

2517
01:31:01,053 --> 01:31:01,587
DEB.

2518
01:31:01,587 --> 01:31:01,854
THANK YOU.

2519
01:31:01,854 --> 01:31:04,123
>> THANK YOU.

2520
01:31:04,123 --> 01:31:05,624
I WANT TO EXPRESS MY DEEP

2521
01:31:05,624 --> 01:31:07,393
APPRECIATION TO ADAM AND ALL OF

2522
01:31:07,393 --> 01:31:08,894
OUR PANELISTS FOR A RICH

2523
01:31:08,894 --> 01:31:09,895
DISCUSSION EMPLOY I COULDN'T

2524
01:31:09,895 --> 01:31:11,063
HAVE HOPED FOR MORE.

2525
01:31:11,063 --> 01:31:11,530
THAT WAS PERFECT.

2526
01:31:11,530 --> 01:31:13,065
I THINK WHEN I THINK OF A GRAND

2527
01:31:13,065 --> 01:31:15,067
VISION, WHAT I THINK OF AS

2528
01:31:15,067 --> 01:31:17,703
SOMEBODY WHO IS A CLINICIAN IS

2529
01:31:17,703 --> 01:31:20,205
REALLY THE INTEGRATION OF

2530
01:31:20,205 --> 01:31:21,473
RESEARCH INTO CLINICAL CARRY, I

2531
01:31:21,473 --> 01:31:23,308
THINK THAT'S THE END GAME THAT

2532
01:31:23,308 --> 01:31:26,345
WE'RE THINKING ABOUT IS THAT

2533
01:31:26,345 --> 01:31:28,147
RESEARCH IS A 2 WAY STREET SO

2534
01:31:28,147 --> 01:31:28,714
THE CLINICIAN PROVIDES

2535
01:31:28,714 --> 01:31:31,450
INFORMATION BUT THE CLINICIAN

2536
01:31:31,450 --> 01:31:32,618
ALSO GETS INFORMATION BACK ABOUT

2537
01:31:32,618 --> 01:31:34,820
HOW TO GUIDE THEIR CARE OF

2538
01:31:34,820 --> 01:31:35,220
PATIENTS.

2539
01:31:35,220 --> 01:31:38,691
SO, THAT IS THE GOAL THAT I KNOW

2540
01:31:38,691 --> 01:31:40,392
WE'RE ALL AIMING FOR.

2541
01:31:40,392 --> 01:31:42,661
SO I WILL WRAP UP THEN AND SAY

2542
01:31:42,661 --> 01:31:45,531
THAT IF YOU WOULD LIKE TO GIVE

2543
01:31:45,531 --> 01:31:47,833
FEEDBACK ON TODAY'S EVENT, THERE

2544
01:31:47,833 --> 01:31:49,668
SHOULD BE A SLIDE THAT WILL

2545
01:31:49,668 --> 01:31:51,937
APPEAR SHORTLY THAT HAS A QR

2546
01:31:51,937 --> 01:31:54,139
CODE THAT YOU CAN ACCESS TO

2547
01:31:54,139 --> 01:31:55,407
PROVIDE FEEDBACK AND WE WOULD

2548
01:31:55,407 --> 01:31:57,876
VERY MUCH APPRECIATE THAT.

2549
01:31:57,876 --> 01:31:59,812
FOR THOSE OF YOU WHO ARE HERE IN

2550
01:31:59,812 --> 01:32:02,181
PERSON, YOU'RE INVITED TO JOIN

2551
01:32:02,181 --> 01:32:03,749
US FOR COFFEE, DR. RESNICK WILL

2552
01:32:03,749 --> 01:32:07,119
STAY WITH US FOR A BIT AND CAN

2553
01:32:07,119 --> 01:32:09,254
CONTINUE THE DISCUSSION.

2554
01:32:09,254 --> 01:32:11,123
THE NEXT NIDCD'S DIRECTOR'S

2555
01:32:11,123 --> 01:32:13,692
SEMINAR SERIES WILL BE HELD NEXT

2556
01:32:13,692 --> 01:32:14,159
FALL.

2557
01:32:14,159 --> 01:32:16,595
PLEASE CHECK THE NIDCD EVENTS

2558
01:32:16,595 --> 01:32:18,597
PAGE OF OUR WEBSITE IN THE

2559
01:32:18,597 --> 01:32:19,631
COMING MONTHS FOR MORE

2560
01:32:19,631 --> 01:32:20,099
INFORMATION.

2561
01:32:20,099 --> 01:32:22,968
AND THIS CONCLUDES OUR

2562
01:32:22,968 --> 01:32:23,302
PRESENTATION.

2563
01:32:23,302 --> 01:32:25,170
THANK YOU ALL FOR COME XG THANK

2564
01:32:25,170 --> 01:32:27,573
YOU ADAM AND OUR PANELISTS.

2565
01:32:27,573 --> 01:32:37,816
[ APPLAUSE ]