I WANT TO RECONVENE OUR 82nd
82nd IMMEDIATING OF THE
NATIONAL ADVISORY COUNCIL FOR
COMPLIMENTARY AND INTEGRATIVE
HEALTH.
I NOTE FOR THE RECORD, THIS
MEETING BEING HELD VIRTUALLY FOR
ALL COUNCIL MEMBERS, NIH STAFF
AND THE PUBLIC.
MY NAME IS PARTAP KHALSA AND I
SERVE AS THE EXECUTIVE SECRETARY
FOR THIS COUNCIL AND ASPER
FEDERAL REGULATIONS, I AM THE
DESIGNATED FEDERAL OFFICIAL FOR
THIS MEETING OF THE NATIONAL
ADVISORY COUNCIL.
THIS COUNCIL MEETING IS CONVENED
AS REQUIRED BY TITLE 42 OF THE
U.S. CODE OF LAWS THAT GOVERN
NIH IN GENERAL AND NCCIH
SPECIFICALLY, THAT'S SECTION
287C-21.
AND IN ACCORDANCE WITH THE
FEDERAL ADVISORY COMMITTEE ACT,
WHICH IS PUBLIC LAW 92-4263 THAT
IS CODIFIED IN TITLE 5 OF THE
U.S. CODE OF LAWS.
I NOTE THAT THE CLOSED SESSION
OF THIS COUNCIL WAS HELD EARLIER
THIS MORNING AND WAS CLOSED TO
THE PUBLIC IN ACCORDANCE WITH
THE GOVERNMENT IN THE SUNSHINE
ACT PUBLIC LAW 94-409 AND
CODIFIED IN TITLE 5 OF THE U.S.
CODE DEALING WITH ADMINISTRATIVE
PROCEDURES FOR FEDERAL AGENCIES.
WE WILL ENDEAVOR TO FINISH THIS
AFTERNOON BY AROUND 4:00 EASTERN
TIME.
THE OPEN SESSION OF COUNCIL IS
OPEN TO THE GENERAL PUBLIC TO
ATTEND VIA LIVE NIH VIDEO CAST
AND THUS CAN AND MAY BE VIEWED
BY INDIVIDUALS ACROSS THIS AND
OTHER COUNTRIES.
WE WILL FOREGO FOR THIS OPEN
SESSION AND THIS OPEN SESSION
WILL INCLUDE MY OPENING
PROCEDURAL REMARKS FOLLOWED BY
THE NCCIH DIRECTOR'S REPORT TO
COUNCIL.
WE WILL THEN BREAK FOR LUNCH.
FOLLOWING LUNCH, WE WILL
RECONVENE AT 1: P.M. EASTERN
TIME AND A PRESENTATION BY MIKE
LAUER THE NIH DEPUTY DIRECTOR
AND DIRECTOR OF THE OFFICE OF
EXTRAMURAL RESEARCH ALONG WITH
Dr. CRAIG HOPP THE DEPUTY
DIRECTOR OF THE NCCIH.
THE PRESENTATION WILL BE ON A
NEW NIH POLICY ON DATA
MANAGEMENT AND SHARING.
THEIR PRESENTATION WILL THEN BE
FOLLOWED BY Dr. HELENE
LANGEVIN LEADING THE
DETERMINANTS OF WHOLE PERSON
HEALTH.
COUNCIL MEMBERS HAVE ALREADY
RECEIVED A COPY OF THE MAY 2022
MEETING MINUTES IN THE
ELECTRONIC COUNCIL BOOK AND A
COPY IS ABOUT TO BE DISPLAYED ON
YOUR SCREEN AT THIS TIME, I
WOULD LIKE TO FINALIZE THE
MINUTES FROM THE 2022 COUNCIL
MEETING AND PARTICULARLY TO ASK
COUNCIL WHETHER THERE ARE ANY
CORRECTIONS OR REVISIONS
ADDITIONS TO THE COUNCIL MEETING
MINUTES?
AND I AM LOOKING TO SEE IF
ANYONE HAS RAISED THEIR DIGITAL
HAND.
I'M NOT SEEING ANY.
I WILL ASK FOR A MOTION OF
APPROVAL OF THE MAY 2022 COUNCIL
MEETING MINUTES BY ANY
COUNCILMEMBER.
>> SO MOVED.
>> AND A SECOND.
>> SECOND.
>> THANK YOU.
SO WE'RE NOW GOING TO GO AHEAD
AND ANY FURTHER DISCUSSION
BEFORE WE TAKE A VOTE.
SEEING NONE.
WE'LL GO AHEAD AND ASK FOR A
VOTE.
YOU WILL SEE A POLL APPEAR ON
YOUR SCREEN AND THIS IS A VOTE
FOR YES IS APPROVING OF THE 2022
COUNCIL MEETING MINUTES.
A VOTE OF NO WOULD BE NOT AND
YOU MAY ABSTAIN.
WE'LL GIVE A LITTLE BIT OF TIME
FOR COUNCIL MEMBERS TO FULLY
ACCESS THIS.
I'M SEEING A UNANIMOUS VOTE FOR
APPROVAL OF THE 2020 COUNCIL
MEETING SO WE'LL END IT THERE.
THANK YOU, VERY MUCH.
THE MINUTES STAND AS APPROVED.
FUTURE COUNCIL MEETING DATES ARE
NOTED ON THE AGENDA FOR THIS
MEETING.
OUR NEXT MEETING WILL BE ON
JANUARY 20th, 2023.
AND IT IS CURRENTLY SCHEDULED TO
BE HELD VIRTUALLY, MEANING VIA
ZOOM GOV.
IF THERE'S ANY CHANGE TO THE
PLAN FOR OUR HOLDING THE COUNCIL
MEETING THAT IS AN OPTION FOR
HOLDING A HYBRID-IN-PERSON
MEETING, WE WILL LET YOU KNOW AS
SOON AS WE KNOW AND IT WOULD BE
ANNOUNCED IN ADVANCE.
PLEASE, LET US KNOW AS SOON AS
POSSIBLE IF YOU WILL KNOW YOU
WILL NOT BE ABLE TO ATTEND A
GIVEN MEETING.
THE LAND AGENDA ITEM IS THE
PUBLIC COMMENTS SESSION.
BECAUSE THIS COUNCIL MEETING IS
BEING HELD VIRTUALLY RATHER THAN
IN-PERSON, IT IS NOT POSSIBLE
FOR MEMBERS OF THE PUBLIC TO
MAKE IN-PERSON COMMENTS.
AS SUCH, ANY MEMBER OF THE
PUBLIC WHO WISHES TO MAKE A
PUBLIC COMMENT MAY DO SO BY
SENDING ME YOUR WRITTEN COMMENTS
WITHIN 15 DAYS OF THE CONCLUSION
OF THIS MEETING.
THIS CAN BE DONE EITHER BY AN
E-MAIL OR A HARD COPY LETTER.
YOUR WRITTEN COMMENTS SHOULD BE
LESS THAN 700 WORDS IN LENGTH
AND IT WOULD BE CONSISTENT WITH
ABOUT A FIVE-MINUTE ORAL
PRESENTATION.
YOUR WRITTEN COMMENTS WOULD BE
PROVIDED TO COUNCIL VIA THE
ELECTRONIC COUNCIL BOOK.
Dr. LANGEVIN, PLEASE, CROWED.
>> Dr. Helene Langevin: GREAT.
WELL, THANK YOU Dr. KHALSA AND
IT'S REALLY MY PLEASURE TO
WELCOME YOU INTO THIS OPEN
SESSION OF COUNCIL.
AND, I WILL PROCEED WITH MY
DIRECTOR'S REPORT.
I WILL SHARE MY SCREEN.
CAN YOU ALL SEE THIS?
I NEED TO DISPLAY.
THIS IS GOOD?
IT'S MY PLEASURE AGAIN TO SHARE
MY DIRECTOR'S REPORT WITH YOU
ALL AND WE'LL START WITH SOME
NCCIH-WIDE AND NACCIH NEWS.
THE FIRST NEWS IS VERY SAD ONE.
WE ARE SO, SO MOURNING THE
TRAGIC PASSING OF REPRESENTATIVE
JACKIE WALORSKI.
SHE WAS ALWAYS SO SUPPORTIVE OF
OUR WORK AT NIH IN GENERAL.
SHE WAS COULD CHAIR OF THE
INTEGRATIVE HEALTH AND WELL IN
CAUCUS AND SHE WILL BE GREATLY
MISSED.
PRESIDENT JOE BIDEN HAS
ANNOUNCED THE SELECTION OF Dr.
MONICA BRITTINO OF THE NATIONAL
CANCER INSTITUTE.
SHE STILL UNDERGOING IN THE
PROCESS OF THE APPOINTMENT
PROCESS.
ANOTHER IMPORTANT IS KEVIN
WILLIAMS AND WHO IS APPOINTED
DIRECTOR OF THE OFFICE NIH
OFFICE OF EQUITY, DIVERSITY AND
INCLUSION.
IT'S REFERRED TO AS EDI.
ALSO Dr. NINA SHORE APPOINTED
AS THE NIH ACTING DEPUTY
DIRECTOR FOR IN TR FOR INTRAMURAL RESEARCH
AND SHE CAME FROM NAINDS.
THE DEPARTMENT OF HEALTH AND
HUMAN SERVICES HAS ANNOUNCED
Dr. ADAM RUSSELL HAS BEEN
SELECTED BY SECRETARY FOR THE
ADVERSE RESEARCH PROJECT AGENCY
FOR HELP OR ARPA-H SO WE'RE
LOOKING FORWARD TO SEEING HOW
THIS IS GOING TO HELP MOVE THIS
INITIATIVE FORWARD.
NOW FOR SOME NCCIH STAFF
UPDATES.
WE'RE WELCOMING A NEW PROGRAM
DIRECTOR TO JOIN ME AND
WELCOMING A PROGRAM DIRECTOR IN
THE BASIC MECHANISTIC RESEARCH
BRANCH HERE AT NCCIH.
HE MANAGED AND DISTRICTS
PORTFOLIO WITH AN EMPHASIS ON
BOTANICALS AND RELATED DIE
STARRY SUPPLEMENTS FOR DRUG
INTERACTIONS AND ETHNO MEDICINE.
Dr. STILL WAS PREVIOUSLY IN
THE OFFICE OF SCIENTIFIC REVIEW
AT NCCIH WHERE HE WORKED AS A
SCIENTIFIC OFFICER.
AS ALWAYS, WE HAVE A LOT OF NEW
STAFF TO WELCOME AND EXTRA MUR
AVERMURAFFAIRS AND WE'VE HAD A NUMBER
OF STAFF DEPARTURE BOTH IN OUR
EXTRAMURAL AND INTRAMURAL
RESEARCH DEPARTMENT.
I'M NOW SHARING THIS BUDGET
UPDATE WITH YOU WHICH IS AS
USUALLY THIS BUDGET SPREAD SHEET
IS AVAILABLE IN YOUR COUNCIL
PACKET.
THIS PARTICULAR VERSION OF THE
MECK TABLE.
WE CAN SHARE OUR APPROVED FY22
APPROPRIATED BUDGET AND
OPERATING PLAN WHICH WILL
CONTINUE TO ADJUST OVER A FISCAL
YEAR BASED ON PROGRAM PRIORITIES
AND PI BUDGETS.
SO, HERE, FOR EXAMPLE, YOU CAN
SEE IN THIS COLUMN, THE FY22.
IN THE FY23 COLUMN YOU ARE
SEEING THE PRESIDENT'S BUDGET
AND AS IS OFTEN THE CASE, WE
WERE NOT ABLE TO SAY ANYTHING
ABOUT THIS FOR NOW EXCEPT, THAT
WE CAN MENTION THAT THERE WAS A
BILL PASSED IN THE HOUSE IN JULY
THAT PROPOSED SOME INCREASE IN
THIS BUDGET FOR NCCIH AS WELL AS
THE SENATE MARKUP THAT ALSO
FURTHER INCREASED INCLUDING SOME
ADDITIONAL MONEY FOR PAYING
RESEARCH, HOWEVER, WE WANT TO BE
VERY CAUTIOUS AS TO REMEMBER
LAST YEAR, WE HAD A SIMILAR
SITUATION FOR FY22 WHERE THERE
WAS SOME ADDITIONAL MONEY FOR
PAYING RESEARCH FOR NCCIH IN THE
PRESIDENT'S BUDGET THAT DIDN'T
COME TO PASS SO WE'RE GOING TO
BE OBVIOUSLY, AGAIN, VERY
CAUTIOUS IN INTERPRETING THIS.
IT'S GOOD TO KNOW THAT THEY'RE
THINKING ABOUT NCCIH IN TERMS OF
THIS.
SO, WE WILL HAVE TO WAIT AND SEE
BECAUSE WE ARE GOING TO LIKELY
BE IN A CONTINUING RESOLUTION
FOR SOME TIME SO IT'S GOING TO
BE A WHILE BEFORE WE KNOW IT.
IN TERMS OF SOME PROGRAM NEWS,
ONE EXCITING PIECE OF NEWS WE
CAN'T SHARE YET BUT VERY SOON IN
A COUPLE OF DAYS, THE AWARDS
WILL BE ANNOUNCED FOR THE BRIDGE
TO A.I. PROGRAM WHICH I HAVE
SHARED WITH YOU BEFORE.
THE GOAL OF THIS PROGRAM IS A
VERY AMBITIOUS, COMMON FUND
PROGRAM THAT NCCIH IS ONE OF THE
CO-LEADS ON IT.
IT'S REALLY DESIGNED TO PROPEL
MEDICAL RESEARCH FORWARD SETTING
THE STAGE FOR WIDESPREAD A COPS
OF ARTIFICIAL INTELLIGENCE AND
THE TACKLE COMPLEX BIOMEDICAL
CHALLENGES BEYOND HUMAN
INTUITION AND THAT INCLUDES THE
CHALLENGE OF UNDERSTANDING
HEALTH AND WE ARE VERY MUCH
LOOKING FORWARD TO WHEN THESE
ANNOUNCEMENTS WILL BE ANNOUNCED
VERY SHORTLY AND WE'LL BE HAVING
SOME MESSAGE MESSAGES ABOUT THIS VERY
SOON AND I'LL GIVE YOU DETAILS
ABOUT THIS PROGRAM AT THE NEXT
COUNCIL MEETING IN JANUARY.
THE NIH IS ALSO ISSUE REQUEST
FOR INFORMATION OR RFI ON FOR
GATHER INFORMATION ABOUT
CANNABIS RESEARCH AND SO THIS IS
SPECIFICALLY TO GATHER
INFORMATION ABOUT BARRIERS AND
SCIENTIFIC INTEREST AND NEEDS
ASSOCIATED WITH THERAPEUTIC
CANNABIS FOR CAN A BOYD RESEARCH
FOR INVESTIGATORS CONDUCTING OR
INTERESTED IN CONNECT NORTH
RESEARCCONNECTING THISRESEARCH.
CHECK OUT THE WEBSITE.
THE RESPONSES ARE YOU CAN SUBMIT
RESPONSES UNTIL OCTOBER 15th
OCTOBER 15th AND IT WILL BE
VERY AT NCCIH AS IT SEEKS TO
ADDRESS THE RESEARCH
INFRASTRUCTURE AND MEET AND
IDENTIFY AREAS.
I ALSO WANT TO MENTION THIS VERY
INTERESTING MAJOR MILESTONE IN
THE DEVELOPMENT OF CYTO SEEN FOR
SMOKING CESSATION.
IT'S A PLANT-BASED FOUND IN THE
SEED OF A GOLDEN RAIN TREE PLANT
AND IT'S A PARTIAL AGONIST OF
NICOTINE RECEPTORS AND TO DATE,
THE PHASE 3 TRIAL I'M PUTTING
HERE BECAUSE THIS IS A LANDMARK
STUDY THAT WE'VE BEEN FOLLOWING
FOR THE DEVELOPMENT FOR QUITE
SOME TIME OF CYTISINICLINE.
I WANT TO POINT OUT ANOTHER
REQUEST FOR INFORMATION THAT IS
CLOSED NOW BUT I'M GOING TO
TELLING YOU ABOUT THIS IN THE
AFTERNOON SESSION.
THIS WAS THE INFORMATION TO
IDENTIFY A SET OF DETERMINANTS
FOR WHOLE PERSON HEALTH AND YOU
HAD A VERY ROW BOOST TALKING
ABOUT IN DETAIL THIS AFTERNOON.
ALSO, I WANT TO DRAW YOUR
ATTENTION TO THE NCCIH CLINICAL
RESEARCH TOOLBOX THAT WAS
REDESIGNED ON OUR WEBSITE AND
THIS IS REALLY A VERY IMPORTANT
INITIATIVE THROUGH OUT NCCIH FOR
ALL THE DIFFERENT BRANCHES AND
OFFICES TO DEVELOP BASED ON THE
FEEDBACK FROM YOU FROM COUNCIL
AND ABOUT INVESTIGATORS ABOUT
HELPING TO CLARIFY A LOT OF
QUESTIONS ABOUT THE CLINICAL
TRIAL, REGULATORY PROCESS
INCLUDE OVERSIGHT, LEVELS OF
CLINICAL TRIALS, REGULATED
PRODUCTS, AND I ENCOURAGE TO YOU
GO TO THE SITE AND CHECK IT OUT
BECAUSE THERE'S A LOT OF NEW
ORGANIZED INFORMATION HERE AND
WAYS THAT ARE USER FRIENDLY AND
THEY WILL HELP YOU VERY MUCH IN
THE PROCESS OF DESIGNING THE
CLINICAL TRIALS AND
UNDERSTANDING ABOUT THE
REGULATORY PROCESS.
NOW, LET'S LOOK AT SOME RESEARCH
HIGHLIGHTS.
SO, SOME A LOT OF INTERESTING
PAPERS THAT JUST WANT TO POINT
OUT.
FIRST, A RECENTLY PUBLISHED
STUDY IN NATURE, PARTIALLY
FUNDED BY NCCIH.
RESEARCHERS AT HARVARD MEDICAL
SCHOOL IDENTIFIED A SPECIFIC
BACTERIAL MEMBRANE MOLECULE
RESPONSIBLE FOR IMMUNO
MODULATORY PROPERTIES OF THE GUT
BACTERIUM AND I DON'T KNOW HOW
TO PRONOUNCE IT, AKKERMANSIIA
MUNINIPHLIA.
ANOTHER REALLY INTERESTING STUDY
CONDUCTED BY RESEARCHERS AT
ORGAN HEALTH SCIENCE UNIVERSITY
FUNDED BY NCCIH AND THE NATIONAL
INTEREST OF AGING AND NATIONAL
CENTER FOR ADVANCES AND
TRANCATIONAL SCIENCE ANALYZED
THE IMPACT OF DEEP BREATHING ON
CSF DYNAMICS.
HERE IS ANOTHER INTERESTING
DEVELOPMENT IN SORT OF LONG-TERM
STUDY OF THE CLINICAL TRIAL
LOOKING AT A GROUP OF DIETARY
SUPPLEMENTS TO PREVENT
AGE-RELATED MACULAR DEGENERATION
AND THIS RECENTLY PUBLISHED
PAPER IS ANALYZED 10-YEAR DATA
FROM THE SECOND FORMULATION OF
THIS AREDS SUPPLEMENTS.
THE INITIAL STUDY HAD FOUND AN
INCREASE RISK OF LUNG CANCER IS
SMOKERS ASSOCIATED WITH ONE OF
THE PARTICULAR COMPONENTS OF THE
SUPPLEMENTS THAT A CAR A TEEN
AND THE FOLLOWING STUDY BY
SUBSTITUTING GLUE TEENY LIMB
NATURED THE CANCER RISK AND
INCREASED THE BENEFICIAL EFFECTS
ON THE MACULAR DEGENERATION.
INTERESTINGLY, HOWEVER, THERE
WAS A SECONDARY ANALYSIS THAT
WAS INDEPENDENTLY DONE OF THE
INITIAL DATASET FOUND THAT THE
BENEFITS OF THE ORIGINAL FORMULA
WERE RESTRICTED TO PATIENTS
WHOSE DIETS WERE HIGH IN MEAT
AND FAT AND LOW IN FISH AND
VEGETABLES.
SO THIS REALLY UNDER SCORED THE
IMPORTANCE OF UNDERSTAND BEING
THE ROLE OF NOT ONLY THE DIETARY
SUPPLEMENTS BUT THE CONTEXT OF
THE DIET AND LIFESTYLE.
THERE'S ANOTHER INTERESTING
STUDY MINDFULNESS TRAINING IN
ITS EFFECT ON IMMUNE FUNCTION
WHEN IT FOUND LONELY OLDER
ADULTS, ACCORDING TO A NEW STUDY
FROM THE UNIVERSITY OF PITTSBURG
AND FUNDED BY NCCIH AND THE ACT
OF THIS MINDFULNESS INCREASED
THE ABILITY OF IMMUNE CELLS TO
RELEASE IL6 IN RESPONSE TO
STIMULATION IN VITRO AND THIS IS
CONSIDERED ONE OF THE IMPORTANT
MARKERS ON IMMUNE SYSTEM
FUNCTION AND DECLINES WITH AGE
AND ALSO PSYCHOSOCIAL STRESS SO
THIS WAS A VERY INTERESTING
COMPLEX INTERACTIONS BETWEEN THE
NERVOUS SYSTEM AND THE IMMUNE
SYSTEM.
HERE IS ANOTHER INTERESTING
STUDY BY Dr. JUSTIN SUNNENBERG
GROUP POPULATIONS AROUND THE
GLOBE GUT FOUND THAT LIFESTYLES
COMPARING LIFESTYLES FROM HUNTER
GATHERERS TO TRANSITIONAL HUMAN
COMMUNITIES AND INDUSTRIAL
POPULATIONS, FOUND IMPACT ON THE
INFANT GUT MICROBIOME
DEVELOPMENT.
ANOTHER EXCITING NEW PUBLICATION
IN THE FIELD DESCRIBING KNEW OWE
PSYCHE ET CETERA AND SPINAL CORD
TO THE HYPOTHALIMUS, TO
CESSATIONS OF SOCIETY AND
REBURGS IN (INAUDIBLE) IT'S
STILL VERY INTERESTING.
FINALLY, AN IMPORTANT STUDY FROM
RICH DAVIDSON'S GROUP SOUGHT TO
VALIDATE THE FINDINGS FROM A FEW
SMALL STUDIES TO SHOW THAT A FEW
WEEKS OF TRAINING AND
MINDFULNESS-BASED STRESS
REDUCTION CAN LEAD TO MEASURABLE
CHANGES IN BRAIN STRUCTURE.
THIS IS IMPORTANT BECAUSE THE
PREVIOUS STUDIES WERE HIGHLY
EXCITED IN THE POPULAR MEDIA
ESPECIALLY HAD GREAT REALLY
AMPLIFIED THESE FINDINGS BUT THE
CURRENT CONTEXT IS THIS MORE
RIGOROUS STUDY FOUND IN LARGER
AND PROPERLY POWER STUDIED FOUND
THERE WAS NO SIGNIFICANT GROUP
DIFFERENCES FOR CHANGES IN
CHANGES IN BRAIN STRUCTURE
EITHER THE WHOLE BRAIN OR
SPECIFIC BRAIN REGIONS FOR NBSR
COMPARED TO AN ACTIVE AND A WAIT
LIST CONTROL GROUPS SO IT'S VERY
IMPORTANT IN THIS DAY AND AGE OF
MISTRUST AND SCIENCE THAT WE ARE
REALLY CAREFUL ABOUT THE CLAIMS
THAT PEOPLE MAKE ABOUT STUDIES.
NOW SOME FUNDING OPPORTUNITY
ANNOUNCEMENTS.
THE FIRST IS WE CALL REACH WHICH
IS RESEARCH ACROSS COMPLIMENTARY
AND INTEGRATED HEALTH
INSTITUTIONS.
THIS IS A VERY IMPORTANT
OPPORTUNITY AND WE ARE TALKING
ABOUT THIS FOR QUITE SOME TIME.
THIS IS TO DEVELOP VIRTUAL
RESOURCE CENTERS.
THIS IS TO FOSTER INSTITUTIONAL
PARTNERSHIPS AND PROVIDE
RESOURCES TO SUPPORT RESEARCH
ACTIVITIES AND RESEARCH TRAINING
FOR FACULTY, WHO WORK AT
ACCREDITED COMPLIMENTARY AND
INTEGRATED HEALTH CLINICAL
INSTITUTIONS SUCH AS SCHOOLS OF
ACUPUNCTURE, CHIROPRACTOR AND ET
CETERA.
THIS IS A IMPORTANT RESOURCE
THAT WILL PROVIDE SERVICES AND
RE SOURCES INCLUDING BUT NOT
LIMITED TO, ADMINISTRATIVE
SUPPORT, RESEARCH SUPPORT, GRANT
MANSHIP, MENTORING, TRAINING AND
TEAM BUILDING TO SUPPORT
CLINICIANS SCIENTISTS, LOCATED
AT COMPLIMENTARY AND INTEGRATED
HEALTH CLINICAL INSTITUTIONS TO
FORM, MULTI AND INTER
DISCIPLINARY RESEARCH TEAMS AND
PURSUE EXTERNALLY FUNDED
RESEARCH ALIGNED WITH NCCIH FOR
SYMPTOM MANAGEMENT.
SO WE REALLY WANT TO STRESS THIS
THIS IS MEANT TO REALLY KIND OF
VERY MUCH ENCOURAGE THE
COLLABORATIONS BETWEEN
CLINICIANS WHO ARE AT THESE
INSTITUTIONS AND RESEARCH
INTENSIVE INSTITUTIONS AND
REALLY BUILD THESE TEAMS THAT
WILL ALLOW THE KIND OF RESEARCH
TO REALLY BE INFORMED BY
CLINICAL PRACTICES AND SO IT'S
VERY, VERY IMPORTANT.
THE NEXT IS A NOTICE OF SPECIAL
INTEREST FOR ADMINISTRATIVE
SUPPLEMENTS FOR COMPLIMENTARY
HEALTH PRACTITIONER RESEARCH
EXPERIENCE.
ANOTHER IMPORTANT EFFORT THAT
WE'RE DOING TO REALLY INCREASE
THE ABILITY OF CLINICALLY
TRAINED PRACTITIONERS TO DO
BETTER RESEARCH AND BE FUNDED TO
DO RESEARCH.
SO THIS IS AN INTENSIVE
SUPERVISED RESEARCH EXPERIENCE
THAT WILL LEAD TO BETTER
UNDERSTANDING AND A PRACTICAL
EXPERIENCE IN COMPLIMENTARY AND
INTEGRATED HEALTH RESEARCH.
SO, TRACTOR-TRAILER NEXT IS A
RESEARCH RESOURCE CENTER TO
BUILD AN OPEN ACCESSORY POS TORI ACCESS RE POSITORY
FOR ACU POINTS AND THIS IS ALSO
AN INITIATIVE THAT WOVE BEEN
WORKING ON FOR QUITE SOME TIME
AND FOLLOWED A SUCCESSFUL
WORKSHOP THAT WE HAD SEVERAL
YEARS AGO ALREADY AND REALLY
POINTED TO THE NEED FOR CREATING
A COMPREHENSIVE DATABASE THAT
WILL INCORPORATE THE DIFFERENT
ASPECTS OF ACU POINTS FROM
RANGING FROM THE DIFFERENT TERM
TERMINOLOGIES, THE WAY THEY'RE
DIE PICKETED IN THE CHINESE
LITERATURE AS WELL AS THE AN TOM
ANATOMICAL LOCATIONS OF THESE
LOCATIONS.
THIS IS ALSO A VERY IMPORTANT
OPPORTUNITY AND WE'RE VERY
EXCITED.
ANOTHER IMPORTANT OPPORTUNITY
FOSTERING MENTAL, EMOTIONAL AND
BEHAVIORAL HEALTH AMONG CHILDREN
IN SCHOOL SETTINGS AND THE
OPPORTUNITIES FOR MULTI-SITE
TRIALS OF COMPLIMENTARY AND
INGRATED HEALTH INTERVENTIONS,
WE KNOW HOW IMPORTANT THIS IS.
WE KNOW ESPECIALLY IN THIS
CLIMATE OF DURING AND FOLLOWING
COVID HOW OUR CHILDREN IN
SCHOOLS HAVE REEL SUFFERED IN
TERMS OF STRESS AND EMOTIONAL
PROBLEMS AND WE THINK THIS IS A
TREMENDOUS IMPORTANT INITIATIVE
THAT WILL REALLY HELP TO FOSTER
A GREATER EMOTIONAL WELLBEING
SCHOOL SETTINGS.
SO THE GOAL OF THIS FOA IS TO
PROVIDE SUPPORT FOR A SET OF
MULTI-SITE TRIALS TO IMPROVE
HEALTH APPROACHES DELIVERED IN
SCHOOL SETTINGS TO HELP WITH
MENTAL HEALTH CRISIS.
ANOTHER NOTICE OF SPECIAL
INTEREST PROMOTING MECHANISTIC
RESEARCH ON THEY ARE YOU'D PICK
AND OTHEON THERAPEUTIC AND THISIS ISSUED F OR MULTIPLE NCCIH
INSTITUTES, CENTERS AND OFFICES.
SO, THIS IS AGAIN AS I SAID,
THIS IS A REALLY TRANS-NIH
EFFORTS.
THERE ARE SO MANY HIGHLIGHTS,
BUT I REALLY ADVISE YOU TO CHECK
OUT OUR WEBSITE FOR, I'M NOT
GOING INTO DETAIL FOR ALL OF
THESE BUT THOSE THAT ARE LISTED
ON THIS PAGE ARE ALL STILL OPEN.
RESEARCH ON INTER RECEPTION,
FUNDAMENTAL SCIENCE, APPROACHES,
NATURAL PRODUCTS, MUSIC AND
HEALTH AND SO PLEASE DO GO CHECK
OUT OUR WEBSITE.
I'M NOW GO TO TURN TO THE HEAL
INITIATIVE UPDATES.
SO, WE ALREADY HAD PREVIOUS, WE
TALKED ABOUT THIS QUITE A BIT.
THE INITIATIVE FOR PRAGMATIC AND
IMPLEMENTATION STUDIES FOR THE
SICKLE CELL DISEASE IS THIS
PARTICULAR ONE IS FOR CLINICAL
TRIALS THAT ARE OPTIONAL AND THE
TECHNICAL ASSISTANCE WEBINAR
THAT OCTOBER 4th FOR ANYBODY
WHO WAS INTERESTED AND REALLY
STRONGLY ADVISE YOU TO THIS IS
THE PAIN MANAGEMENT FOR CLINICAL
TRIALS REQUIRED AND BOTH OF
THESE ARE FOR THE UG3-UH3
MECHANISM FOR COOPERATE TIVE
AGREEMENTS AND TECHNICAL
ASSISTANCE WEBINAR OCTOBER 4th
OCTOBER 4th.
THIS IS FOR THE PREVENTION AND
MANAGEMENT OF CHRONIC PAIN IN
RURAL POPULATIONS BY THE HEAL
INITIATIVE AND THIS
PARTICULAR -- THIS APPLICATION
DUE DATE IS NOVEMBER 15th.
PAST ACTIVITIES AND EVENTS SO WE
HAVE VERY SUCCESSFUL INTEGRATED
MEDICINE LECTURE SUR HE'S AND WE
CALL IT ILMS AND WONDERFUL
LECTURE ON WELLBEING AND
ECONOMIC BURDEN OF DISEASE FROM
MICHELLE MARTIN AND THAT WAS IN
MAY AND THIS LECTURE IS ARCHIVED
ON NIH VIDEO CAST AND WE ALSO
HAD A LECTURE ON ADVANCING
RESEARCH ON EMOTIONAL WELLBEING
AND THE REGULATION OF EATING.
THEY'RE ALSO ARCHIVED.
PAST EVENTS, WE HAD PAIN CO CON -- I
MENTIONED SOME VIRTUAL TRAINING
WORKSHOPS SO THIS IS FOR THE
WHOLE-PERSON HEALTH RESEARCH
CAREERS SO SEPTEMBER 15th AND
16th COMING UP VERY SOON.
AND IT IS VERY IMPORTANT ENDING,
INTERESTING CONFERENCE ON LIMB
FAD I CACONFERENCE LYMPHATICSYSTEMS AND TH IS IS A TRANS-NIH
INTEREST GROUP IN LYMPHATIC
RESEARCH.
THIS IS, AS I MENTIONED BEFORE,
THE REACH VIRTUAL CENTER
TECHNICAL ASSISTANCE WEBINAR,
SEPTEMBER 21st, THE DATA
MANAGEMENT SHARING POLICY.
A TWO-PART WEBINAR SERIES.
I'M SORRY, THIS IS GOING TOO
FAST.
SHARING POLICY AND ANOTHER
TECHNICAL ASSISTANCE WEBINAR.
WE'LL TALK ABOUT THIS LATER.
SICKLE CELL DISEASE AND PAIN
MANAGEMENT ASSISTANCE
OCTOBER 4th.
REPOSITORY FORT ACUPUNCTURE AND
DATABASE WEBINAR IN
OCTOBER 6th.
HOT TOPIC WEBINAR ON EMERGING
PRODUCTS AND METHODOLOGIES
NOVEMBER 7th AND SAVE THE DATE
FOR OUR STRAUSS LECTURE.
Dr. LAURA STRAUSS FROM BROWN
UNIVERSITY AND SHE'S GOING TO BE
TALKING ABOUT EMOTIONAL IN YOUNG
CHILDREN AND ADOLESCENTS.
NEXT MEETING, SAVE THE DATE WITH
2023 AND ALL RIGHT, WELL, I WENT
OVER AND I APOLOGIZE.
IT'S ALWAYS TOO MUCH TO SAY.
SO, THAT'S IT FOR ME.
ANY QUESTIONS OR COMMENTS?
>> THANK YOU.
>> I SAW AN ANNOUNCEMENT FOR A
KO2 PROGRAM, INTERNAL KO2
PROGRAM YOU DIDN'T MENTION.
IS IT SOMETHING YOU ARE DEVELOP
ORGANIZE BORROWING FROM OTHER
NIHs?
>> WE'VE ANNOUNCED THIS ONE
BEFORE.
I AM ONLY TALKING ABOUT THE ONES
THAT ARE NEW RIGHT NOW BECAUSE I
CAN'T GO THROUGH ALL THE OF THE
OPPORTUNITIES ANNOUNCEMENTS.
BUT LENA HAS PUT IN A CHART THE
INFORMATION REGARDING THIS.
>> THANK YOU.
Dr. TAYLOR.
>> YEAH, I JUST WANT TO SAY
THANK YOU AND COMMEND NCCIH
LEADERSHIP AND STAFF FROM THOSE
INITIATIVES TO SUPPORT RESEARCH
CAPABILITY AND HEALTH
PRACTITIONERS AND I KNOW IT'S
BEEN A LONGSTANDING CHALLENGE.
I MEAN REALLY GOING BACK 15 PLUS
YEARS.
IT'S GREAT TO SEE IT BUBBLING UP
TO THE TOP OF THE AGENDA.
THANK YOU FOR THAT.
AND SIMILARLY, I REALLY WANT TO
THANK YOU FOR THE RFA AIMING AT
SCHOOL-BASED INTERVENTIONS
BECAUSE I THINK, YOU KNOW, WHEN
WE TALK ABOUT WHOLE-PERSON
HEALTH, STARTING WITH KIDS AND
STARTING IN SCHOOLS WHERE ALL
THE KIDS ARE, I THINK IT'S JUST
REALLY SORT OF AN INDISPENSABLE
CONCEPT SO I'M JUST REALLY
THRILLED TO SEE US TACKLING
THAT.
I THINK IT'S GREAT AND I JUST
WANTED TO THANK YOU ALL FOR
THAT.
>> Dr. Helene Langevin: THANK
YOU FOR YOUR COMMENT.
IT'S INTERESTING WHAT YOU SAID
ABOUT THE VIRTUAL RESEARCH
CENTERS AND WE HAD SO MANY
DISCUSSIONS AT COUNCIL ABOUT
THIS WAY BACK WHEN I USED TO BE
ON COUNCIL.
AND IT WAS ONE OF OUR COUNCIL
MEMBERS PATRICIA HERMAN WHO
REALLY LED THE WAY HERE.
THEY STARTED A VIRTUAL RESEARCH
CENTER FOR THE RAM CORPORATION
AND REALLY SHOWED IT COULD DO
THIS AND THIS REALLY INSPIRED US
AND SHE WAS REALLY VERY MUCH OF
AN ADVOCATE FOR THIS AND WE
LISTENED.
AND I THINK THAT THIS WILL BE A
GAME CHANGER.
I REALLY FEEL LIKE THERE ARE SO
MANY BARRIERS TO SUBMITTING
GRANT APPLICATIONS THAT FROM
INSIDE N NCCIH WE DO ALWAYS KNOW
HOW DAUNTING A TASK IT IS TO
SUBMIT A COMPETITIVE GRANT
APPLICATION.
EVEN DETAILS THAT YOU DON'T
THINK ABOUT.
HOW DO YOU SET UP A DUNCE NUMBER
AND THINGS THAT ARE ELEMENTARY
BUT HOW TO EVEN RE-- THIS IS A
TOPIC WE'LL TALK ABOUT AGAIN
LATER AT FUTURE COUNCILS.
HOW DO YOU NAVIGATE THE COMPLEX
ENVIRONMENT OF FUNDING
OPPORTUNITIES?
THERE ARE SO MANY.
HOW DO YOU EVEN KNOW WHICH ONES
ARE RELEVANT TO WHAT YOU WANT TO
DO AND IN WELL-FUNDED, YOU KNOW,
INSTITUTIONS, THEY HAVE LARGE
NUMBERS OF PEOPLE AND SPONSORED
PROGRAMS, RIGHT TO HELP WITH
THAT BUT AS SMALLER INSTITUTIONS
AND ESPECIALLY AT COMPLIMENTARY,
THEY DON'T HAVE THAT BENEFIT.
SO THIS ATTEMPT, THIS IS AN
ATTEMPT TO FILL THAT IMPORTANT
GAP.
SO WE HOPE THAT THIS IS GOING TO
REALLY MAKE A DIFFERENCE.
ANY OTHER FEEDBACK OR COMMENT OR
QUESTIONS?
>> CAN I JUST ASK YOU FOR THIS
APPLICATION FOR THE
COLLABORATIVE APPLICATION WOULD
YOU EXPECT SCHOOLS OF MUSIC TO A
PLOY OR MAJOR ACADEMIC
INSTITUTION AND COLLABORATION
WITH SCHOOLS OF MUSIC OR
ACUPUNCTURE?
>> Dr. Helene Langevin: FOR THE
VIRTUAL RESOURCE CENTERS?
>> YES.
>> Dr. Helene Langevin: YEAH.
WHY NOT.
I MEAN, ANY SCHOOL AND THAT SORT
OF ARTS AND MUSIC IS PART OF
THIS, YEAH.
AS LONG AS THEY'RE DOING THIS
NOT JUST FOR MUSIC ITSELF BUT A
THERAPEUTIC SENSE MUSIC AS A
THERAPY, YEAH.
>> THIS IS A GREAT, I WAS JUST
WRITING THIS DOWN THAT THIS IS
ACTUALLY AN ADDITIONAL COMPONENT
TO OUR MUSIC AND HEALTH CAPACITY
BUILDING EFFORT THAT YOU KNOW
THAT WE NEED TO ACTUALLY PROMOTE
MORE.
>> THAT'S RIGHT BECAUSE IT'S
JOINED THAT.
>> YES.
>> IT'S A VERY GOOD QUESTION.
>> IT'S GOING TO ACTUALLY
COMPLIMENT THE CONCEPT CLEARANCE
THAT ACTUALLY WAS PRESENTED ON
THE RESEARCH NETWORKS ON MUSIC
AND HEALTH.
>> RIGHT.
>> I WANTED TO FOLLOW-UP ON
THAT.
I WANTED TO LENA COMMENT ABOUT
THIS RFA BECAUSE I THINK IT
REALLY IS BEEN A LONG TIME
COMING AND IT'S REALLY
IMPACTFUL.
>> YES, THANK YOU.
I'M EXCITED TO HEAR THE
ENTHUSIASM FROM COUNCIL FOR THIS
RFA AND I DEFINITELY ENCOURAGE
FOLKS TO SIGN UP FOR THE
TECHNICAL WEBINAR AS WELL.
WE ARE LOOKING TO CREATE AT
LEAST TWO OF THESE RESOURCE
CENTERS TO REALLY PROVIDE
VIRTUAL RESOURCES THAT CAN REACH
MANY DIFFERENT INTERNET GRITTED
HEALTH INSTITUTIONS AND ONE PART
OF THIS IS THAT WE'RE ACTUALLY
REQUIRING THAT THE APPLICANTS
COME IN WITH AT LEAST THREE
PARTNERING INSTITUTIONS OF
DIFFERING CLINICAL AREAS AND SO,
YOU KNOW, WE DON'T NECESSARILY
WANT TO PROMOTE A RESOURCE
CENTER THAT IS JUST FOCUSED ON
CHIROPRACTIC, WE WANT INTER
DISCIPLINARY RESEARCH CENTERS
THAT CONNECT DIFFERENT
DISCIPLINES TOGETHER TO REALLY
HAVE THESE MULTI MOTTAL RESEARCH
APPROACHES, ET CETERA.
SO YOU KNOW, WE HAVE ALREADY
BEEN RECEIVING A LOT OF INTEREST
FROM THE COMMUNITY.
I'VE GOTTEN SEVERAL E-MAILS AND
HAD SOME REALLY EXCITING
CONVERSATIONS ALREADY SO WE'RE
EXCITED TO SEE.
APPLICATIONS COMING IN FOR THIS
ONE.
>> THANK YOU Dr. MUDD.
>> THANK YOU FOR PUTTING THAT IN
THE CHAT.
YEAH, A LOT OF THESE I WENT
THROUGH REALLY QUICKLY THROUGH
THIS AND REALIZING THAT I
MISREAD THE TIME.
I THOUGHT I WAS BEHIND SCHEDULE,
I WAS AHEAD OF SCHEDULE, I'M
SORRY.
THE IMPORTANT THING IS, CHECK
OUT OUR WEBSITE.
ALL OF THIS IS ON OUR WEBSITE
AND YOU KNOW THERE'S SO MUCH
INFORMATION OUT THERE AND THE
IMPORTANT THING IS YOU KNOW,
WHERE ALL OF THESE PROGRAMS ARE
BEING DEVELOPED WITH INPUT, WITH
THE INPUT FROM YOU AND ALSO
PLUGGING STRAIGHT INTO OUR
STRATEGIC PLAN SO THIS WILL ALL
FEED ON EACH OTHER.
>> EMILY, DO YOU WANT TO TALK
ABOUT THE ACUPUNCTURE DATABASE
RFA.
>> I'M SORRY.
>> THANK YOU.
YES, THIS RFA WILL ACTUALLY
SUPPORT THE MAINTENANCE OF A
REPOSITORY AND DATABASE FOR
COMMONLY USED AND ANNA ATOMICAL
SPA PHYSICAL INDICATIONS AND
OTHER RELEVANT AND AS WELL AS
INTEGRATION WITH OTHER DATABASES
WHICH CORRELATES AND ALSO
CREATES DURING OUR TECHNICAL
ASSISTANCE WEBINAR ON THURSDAY,
OCTOBER 6th, AND I WILL
INCLUDE THE LINK IN THE CHAT AND
ALSO, WE ARE PLANNING TO HOST A
SEPARATE WEBINAR ON FUTURE DATES
TOO.
>> THANK YOU.
>> Dr. Becky Wagenaar-Miller: SHE IS ONE O F OUR NEW PROGRAM
DIRECTORS AND WE'VE BEEN WORKING
VERY HARD ON THIS AND HER
EXPERTISE IS IN BIG DATA SO THIS
IS GOING TO BE A REALLY, IF WE
THINK OF THIS AS LIKE A RESITA
STONE, A WAY TO TAKE, BECAUSE
THE WORLD OF ACUPUNCTURE IS VERY
HETERO GENOUS AND HE HAVE THIS
INFORMATION TIED TO CHINESE
LITERATURE, TRADITIONAL CHINESE
LITERATURE WHERE THE INFORMATION
IS BOTH IN THE TRADITIONAL
CHINESE CHARACTERS AND OPINION
NAMES AND THERE'S THE AN
ATOMICAL LOCATIONS AND THEN
THERE'S A LOT OF HISTORICAL,
CLINICAL INFORMATION ABOUT WHAT
HAPPENS WHEN YOU PUT A NEEDLE IN
A CERTAIN LOCATION, BUT HOW DOES
THAT TRANSLATE INTO PHYSIOLOGY
AND THERE REALLY NEEDS OBJECT,
THIS IS HOW WE THINK WITH THIS
IS A RELATIONAL DATABASE THAT
WILL ALLOW TRANSLATION ACROSS
ALL OF THIS AND ONE OF THE
THINGS THAT I THINK IS WHAT
WE'RE GOING TO FIND IS THAT
THESE AN ATOMICAL LOCATIONS,
THESE ACU POINTS ARE WHAT WE
CALL AN ATOMICAL SHORT HAND FOR
DIRECTING THE STIMULATION VIA A
NEEDLE OR SOME OTHER WAY TO A
SPEASPECIFIC LOCATION THAT HAS
PHYSIOLOGICAL PROPERTIES BUT WE
DON'T KNOW WHAT THEY ARE YET,
SOME OF THEM WE KNOW BUT NOT ALL
OF THEM AND SOME OF THESE POINTS
MAY OR MAY NOT BE MEANINGFUL AND
NOT ALL OF THEM WOULD HAVE
MEANINGFUL ATTRIBUTES BUT WE
HAVE TO START SOMEWHERE.
IT WOULD BE A NICE WAY TO DO
THIS IN A VERY SYSTEMATIC WAY.
ALL RIGHT.
ANY OTHER COMMENTS?
I GUESS WE ARE AHEAD AND THAT'S
TOTALLY MY FAULT FOR NOT
SEEING -- I WAS LOOKING AT MY
WATCH AND I WAS NOT LOOKING AT
IT CORRECTLY.
WELL, WE'LL HAVE A LONGER LUNCH
BREAK.
HOW ABOUT PARTAP, ARE YOU OK
WITH THAT?
>> YEAH.
SO ARE THERE ANY OTHER QUESTIONS
OR COMMENTS OR OBSERVATIONS THEY
WANT TO SHARE NOW, WE CAN GO
AHEAD AND BREAK EARLY FOR LUNCH
WE'LL STILL START THE NEXT
SESSION WILL BE AT 1:30 PROMPTLY
AND WE ASK COUNCIL MEMBERS TO BE
BACK AT 1:25 AND THIS IS THE
PRESENTATION BY Dr. MIKE LAUER
AND CRAIG HOPP ON DATA
MANAGEMENT AND SHARING AND WE'LL
START THAT PROMPTLY AT 1:30 AND
ALL COUNCIL MEMBERS ARE INVITED,
IF YOU WANT, TO TICK TAKE A LUNCH
BREAK.
WE'RE INFORMAL AND WE HAVE A
LUNCH BREAK ROOM, A VIRTUAL
LUNCH BREAK ROOM WHERE YOU CAN
JOIN WITH OTHER COUNCIL MEMBERS
AND NCCIH STAFF AND NO AGENDA,
JUST ENJOYING EACH OTHER'S
COMPANY AND TALKING ABOUT
WHATEVER.
YOU CAN COME AND GO AND YOU CAN
ENTER INTO THAT ROOM AND YOU
WILL BE AUTOMATICALLY GIVEN THIS
OPTION AS SOON AS WE CONCLUDE
THIS MEETING TO JOIN THE VIRTUAL
LUNCH SESSION AND PEOPLE WILL
SORT OF BE COMING IN AND OUT SO
YOU DON'T HAVE TO BE THERE
PROMPTLY AND YOU CAN LEAVE WHEN
YOU WANT.
YOU DON'T HAVE TO COME AT ALL.
GO TAKE A WALK, WHATEVER YOU
WANT TO DO.
AND THEN THAT VIRTUAL LUNCH ROOM
WILL CLOSE ABOUT FIVE MINUTES
BEFORE WE START THE 1:30
SESSION.
AND IT WILL BE BACK IN ON VIDEO
CAST PROMPTLY AT 1:30.
SO, I HOPE EVERYONE HAS A NICE,
ENJOYABLE LUNCH.
I'M GIVING YOU MORE TIME.
AND WE'LL SEE YOU AUTOMATIC BACK
HERE AT 1:30 AND THOSE WHO HAVE
LUNCH VIRTUALLY WITH US, WE'LL
SEE YOU IN THE LUNCH ROOM.
THANK YOU, EVERYBODY.
WILL SEE YOU THEN.
RECONVENE AFTER OUR LUNCH BREAK.
AND WE'RE GOING TO BE HAVING A
PRESENTATION AND Dr. LANGEVIN,
YOU WILL INTRODUCE OUR GUESTS.
>> Dr. Helene Langevin: IT'S MY
GREAT PLEASURE TO WELCOME MIKE
LAUER FOR EXTRAMURAL RESEARCH AT
THE NIH AND HE SERVES AS THE
PRINCIPLE SCIENTIFIC THEATER AND
ADVISER TO THE DIRECTOR OF NIH
ON ALL MATTERS RELATED TO THE
SUBSTANCE, QUALITY AND
EFFECTIVENESS OF THE NIH
EXTRAMURAL RESEARCH PROGRAM AND
ADMINISTRATION.
HE RECEIVED EDUCATION AND
TRAINING AT POLYTECHNIC, ALBANY
MEDICAL COLLEGE, HARVARD MEDICAL
SCHOOL, THE NHLBI FRAMINGHAM
HEART STUDY.
HE SPENT 14 YEARS AS THE
CLEVELAND CLINIC AS PROFESSOR OF
MEDICINE, EPIDEMIOLOGY AND BIO
STATISTICS AND DURING HIS TENURE
AS A CLINIC HE LEAD A RENOWNED
EPIDEMIOLOGY PROGRAM THAT
APPLIED BIG DATA FROM
LARGE-SCALE ELECTRONIC DATA WITH
DIAGNOSIS AND MANAGEMENT OF
CARDIOVASCULAR DISEASE SO, Dr.
LAUER IS SO KEY TO MAKING SURE
THAT ALL OF OUR RESEARCH
ACTIVITIES ARE RUN AT THE BEST
POSSIBLE CLIP AND BAIT AND
EFFICIENCY AND QUALITY AND WE'RE
SO WELCOME TO HAVE HIM HERE
TODAY.
TO TELL US ABOUT NEW
DEVELOPMENTS.
>> THANK YOU, HELENE.
I WILL SHARE MY SCREEN.
THANK YOU, VERY MUCH FOR IN
INVITING ME TO BE HERE TODAY AND
IT'S MY PLEASURE TO TALK ABOUT
THE NIH POLICY FOR DATA
MANAGEMENT IMPLEMENTATION AND
SHARING.
I'M ONE OF MANY HERE.
THIS WAS A LARGE TEAM THAT PUT
THIS TOGETHER.
I WANT TO GIVE PARTICULAR THANKS
TO MY COLLEAGUES, LYRIC AND THEN
THE OFFICE OF SCIENCE POLICY.
SO, DATA SHARING IS NOT NEW AND
HAS BEEN OF HIGH PRIORITY FOR A
LONG TIME.
LITERALLY IT GOES TO THE HIGHEST
LEVELS OF GOVERNMENT.
WHEN JOE BIDEN WAS VICE
PRESIDENT, WAS OVERSEEING THE
CANCER MOONSHOT PROGRAM, HE MADE
DATA SHARING A TOP PRIORITY.
THE 21st CENTURY CURES ACT WAY
WAS PASSED BY OVERWHELMING
BIPARTISAN MAJORITIES IN
DECEMBER OF 2016, CONTAINED A
PROVISION THAT STATED THAT THE
NIH DIRECTOR MAY REQUIRE
RECIPIENTS OF NIH AWARDS TO
SHARE SCIENTIFIC DATA, TO THE
EXTENT FEASIBLE, GENERATE
INTERESTED NIH AWARDS.
SO THIS IS LITERALLY COMING FROM
THE HIGHEST LEVELS OF GOVERNMENT
BOTH IN THE EXECUTIVE BRANCH AND
IN THE CONGRESS.
DATA SHARING IS NOT NEW.
DATA SHARING POLICIES AT THE NIH
GO BACK ALMOST 20 YEARS TO 2003.
THE CURRENT OVERARCHING DATA
POLICY IS WHAT WE'RE UNDER RIGHT
NOW, GOES BACK TO 2003.
THAT APPLIES TO AWARDS OF
GREATER THAN $500,000 A YEAR IN
THEIR DIRECT COSTS.
IN 2014, WE ISSUED THE GENOMIC
DATA SHARING POLICY IN 2016, WE
TALKED ABOUT THE POLICY ON
MAKING INFORMATION ABOUT
CLINICAL TRIALS AVAILABLE AND I
HAVE A RECOLLECTION WE TALKED
ABOUT CLINICAL TRIALS AT ONE
POINT WITH THIS GROUP.
AND THERE HAVE BEEN A NUMBER OF
OTHER DATA SHARING POLICIES THAT
HAVE BEEN PUT OUT BY VARIOUS
I.C.s AND PROGRAMS.
THIS IS BEEN A LONG-TIME AND
COMING AND AS I SAID, IT GOES
THIS PARTICULAR POLICY GOES BACK
TO 2016 AND THERE HAVE BEEN
OPPORTUNITIES FOR COMMUNITY
COMMENT AND THOSE COMMENTS HAVE
BEEN INCORPORATED AND THERE WERE
ALSO MULTIPLE OTHER PARTS OF
GOVERNMENT THAT PARTICIPATED IN
PUTTING THIS TOGETHER AND THE
FINAL POLICY WAS RELEASED IN
OCTOBER OF 2020.
SO THAT WAS ALMOST TWO YEARS
AGO.
AND THE POLICY IS TO BE
EFFECTIVE IN JANUARY OF 2023.
SO WE DELIBERATELY ALLOWED FOR
TWO-PLUS YEAR PERIOD BETWEEN THE
ISSUANCE OF THE POLICY AND THE
IMPLEMENTATION OF THE POLICY SO
THAT WE COULD BE AS READY AS
POSSIBLE.
NOW, DATA SHARING IS IMPORTANT
AND NIH WANTS DATA TO BE SHARED.
HOPEFULLY THIS IS FAIRLY
OBVIOUS.
AND BY PROMOTING DATA SHARING,
WE ADVANCE A REPRODUCE ABLE
RESEARCH AND PROMOTE PUBLIC
TRUST IN RESEARCH.
THE IDEA OF DATA SHARING AS I
SAID, IS NOTHING NEW AND THERE
ARE OTHER FIELDS OF SCIENCE
WHERE THIS IS ALREADY VERY MUCH
THE NORM BUT THE ENVIRONMENT
THAT WE SEE IN BIOMEDICAL
SCIENCE IS NOT ALL THAT GOOD.
SO HERE IS AN EXAMPLE OF A
SERIES OF PAPERS THAT WAS
PUBLISHED THIS PAST DECEMBER ON
AN ATTEMPT TO REPLICATE 193
EXPERIMENTS FROM 53 HIGH-IMPACT
PAPERS ON PRE CLINICAL CANCER
BIOLOGY.
THE BOTTOM LINE HERE WAS THAT
MANY OF THESE EXPERIMENTS COULD
NOT BE REPLICATED, SOME OF THEM
COULD BE.
BUT ONE OF THE DISTURBING
ASPECTS OF THIS IS THAT DESPITE
CONTACTING THE AUTHORS OF THE
ORIGINAL PAPERS, WE WERE UNABLE
TO OBTAIN DATA FOR 68% OF THE
EXPERIMENTS.
SO DESPITE THE FACT THAT THEY
WERE TRYING TO WORK WITH THE
AUTHORS O OF THE ORIGINAL
PAPERS, THEY MOST OF THE TIME
THEY WERE UP AN TO BELIEVE.
>> Toni-Marie: GET DATA.
AND THEY LOOKED AT 1791BMC NAMES
HAD A DATA AVAILABLE STATEMENT
WHERE IT WAS IN THE PAPER THAT
SAID DATA CAN BE OBTAINED DOING
XY AND Z AND THEY WANT AFTER THE
AUTHORS OF THE 1792 PAPERS AND
SAID WE'D LIKE TO SEE THE DATA
AND IN ONLY 7% OF THE INSTANCES
WHERE DATA WAS PROVIDED,
HOWEVER, THE NEWS IS NOT ALL
BAD.
THIS IS A PAPER THAT WAS
PUBLISHED BY MY FORMER
COLLEAGUES AT THE NATIONAL HEART
BLOOD AND INSTITUTE WHERE THEY
LOOKED AT DATA FROM 100 CLINICAL
TRIALS THAT THE INSTITUTE HAD
FUNDED AND THESE WERE
INDIVIDUAL-LEVEL PATIENT DATA
MADE AVAILABLE THROUGH A
REPOSITORY AND FOR 90% OF THE
TRIALS, DATA WERE REQUESTED AND
WERE ACTUALLY TAKEN.
AND THAT FOR NEARLY HALF THE
TRIALS, ARTICLES WERE PUBLISHED
AND IN THIS PARTICULAR REPORT
THEY SAY 277 ARTICLES WERE
PUBLISHED ON THE BASIS OF DATA
FROM 47 TRIALS SO IN SOME CASES
WE HAVE SHARED DATA BEING USED
AND ARE BEING USED FOR
SCHOLARSHIPS AND THEY LOOKED AT
THE CITATION STATS ON THESE
ARTICLES AND THIS CITATIONS
STATS WERE AT LEAST AS GOOD AS
THE GENERAL PAPERS THAT ARE
PUBLISHED BY NCCIH FUNDED
AUTHORS.
LET ME MAKE A COUPLE
DISCLOSURES, HERE.
THERE WAS A PERIOD OF TIME I
OVERSAW THE DIVISION OF NHLBI SO
I THINK IT'S AN OUTSTANDING
REPOSITORY AND BEFORE I CAME TO
NIH, I TOOK ADVANTAGE OF THIS
AND I DOWNLOADED DATA FROM A
COUPLE OF TRIALS AND WORKED WITH
MY COLLEAGUES AND WE PUBLISHED
PAPERS THAT WERE BASED ON THESE
DATA AND MOST AMERICANS BELIEVE
IN DATA SHARING IN SOME WAYS AND
THEY BELIEVE SCIENTIFIC FINDINGS
IF THEY KNOW THE PUBLIC IS
AVAILABLE AND THEY'RE LESS
LIKELY TO BELIEVE IT IF THE
STUDY WAS FUNDED BY THE FEDERAL
GOVERNMENT OR EVEN WORSE BY
INDUSTRY.
I'M GOING TO TALK ABOUT THE
POLICY ITSELF.
THE POLICY IS VERY SIMPLE.
THERE HAS TO BE A DATA
MANAGEMENT AND SHARING PLAN WITH
THE APPLICATION AND WHEN THAT
PLAN IS APPROVED, THERE'S A
RESPONSIBILITY TO COMPLY WITH
THAT PLAN.
THERE ARE DETAILS.
ONE QUESTION IS WHAT ACTUALLY IS
DATA?
WE HAVE A DEFINITION OF WHAT
DATA IS AND THAT IS WRITTEN HERE
BUT WHAT IS MORE IMPORTANT IS
NOT WHAT WE'RE NOT LOOKING FOR
LAB NOTES AND CASE REPORT FORMS
AND SAMPLES AND OBJECTION AND
THERE ARE CERTAIN TYPES OF NIH
APPLICATIONS LIKE TRAINING OR
FELLOWSHIP APPLICATIONS OR
RESOURCE APPLICATIONS AND
THEY'RE NOT EXPECT TODAY AGAIN
UT RATE DATA SO THEY DON'T
APPLY.
IT WILL BE SHARED AT THE TIME OF
PUBLICATION AND IF THERE'S NO
PUBLICATION AND BY THE END OF
THE AWARD.
THE GENERAL PHILOSOPHY IS THAT
DATA SHOULD BE SHARED TO THE
MAXIMUM DEGREE POSSIBLE.
NOT ALL DATA NEEDS TO BE SHARED.
ALL DATA HAS TO BE MANAGED BUT
NOT ALL DATA HAS TO BE SHARED.
WE RECOGNIZE THERE ARE
CIRCUMSTANCES WHERE THERE IS
LEGITIMATE RESTRICTIONS TO DATA
SHARING AND THAT DEALS WITH
ISSUES LIKE PRIVY RIGHTS, AND
CONFIDENTIALITY AND REGULATION
AND THE PROCESS IS PROSPECTIVE.
PEOPLE SHOULD BE THINKING ABOUT
HOW THEY'RE GOING TO MANAGE AND
SHARE THEIR DATA FROM THE GET-GO
WHICH IS WHY WE'RE ASKING FOR
THIS INFORMATION AT THE TIME OF
APPLICATION.
THERE ARE MAYBE REASONS WHY DATA
MAY NOT BE SHARED AND NOD
CONSENT, PRIVACY OR SAFETY OF
RESEARCH PARTICIPANTS, EXPLICIT
LAWS INCLUDING STATE, LOCAL OR
TRIBAL LAWS AND RESTRICTIONS
BECAUSE OF AGREEMENTS WITH THE
OTHER PARTIES AND DATAS THAT
CANNOT PRACTICALLY BE DIGITIZED.
THERE ARE REASONS THAT ARE NOT
LEGITIMATE LIKE THE DATA IS TOO
SMALL AND WE DON'T THINK PEOPLE
WANT TO USE IT AND WE DON'T
THINK THERE'S A SUITABLE
REPOSITORY, I'LL TALK ABOUT
REPOSITORIES IN JUST A BIT.
THERE ARE SOME OTHER
CONSIDERATIONS RELATE TODAY
TRAVEL SOVEREIGNTY AND AS WELL
AS SBIR-STTR AWARDS.
THERE'S NO WAY THAT I CAN
POSSIBLY GO OVER ABSOLUTELY
EVERYTHING ABOUT THIS IN 20
MINUTES.
I WILL WANT TO POINT OUT THAT WE
PUT OUT A WEBSITE HAS AN EASY TO
REMEMBER URL THAT WAS RELEASED
IN APRIL AND WORE UPDATING OUR
CONTENT AND IT'S THE ONLY THING
THAT COMES OUT OF THIS
DISCUSSION TODAY IS YOU HAVE
BEEN MADE AWARE OF THIS
WESTBOUND SIDE AND IT'S A HUGE
AMOUNT OF MATERIAL IN HERE AND
IT COVERS THE SCIENTIFIC DATA
AND IT IT COVERS MODEL ORGANISMS
AND CLINICAL TRIALS AND IT HAS
RESOURCES SO FOR EXAMPLE,
THERE'S A WIDDARD HERE TO HELP
YOU FIGURE OUT WHICH POLICIES A
REPLY TO YOUR RESEARCH IT WALKS
YOU THROUGH QUESTIONS AND WHERE
YOU CAN FIGURE OUT WHAT POLICIES
ARE IMPORTANT AND THEIR
RESOURCES ON DATA SHARING
APPROACHES AND HOW TO SELECT A
REPOSITORY AND AS WELL AS A
EXISTING REPOSITORY AND THE
RESOURCES FOR AND THIS IS NOT
FRO.
ALSO, SO I GOT YOUR INTERNET IS
UNSTABLE.
THESE ARE THE ELEMENTS OF A DATA
MANAGEMENT AND SHARING PLAN AND
THE DOCUMENT GROUND ZERO INTO
THIS IN A LOT MORE DETAIL BUT
THIS IS THE INFORMATION WE WANT
TO SEE, WHAT TYPE OF DATA,
RELATED TOOLS, SOFTWARE CODES
NEEDED TO ACCESS OR MA LIP
NATURE THE DATA, STANDARDS, DATA
PRESSER RACE AND ACCESS AND TIME
LINES AND IMPORTANT ONE IS ABOUT
ACCESS.
FOR EXAMPLE, CAN SOMEONE JUST
DOWNLOAD THE DATA AND START
USING IT OR IS THERE SOME FORM
OF CONTROLLED ACCESS AND THAT
MAY BE APPROPRIATE AND A
REPOSITORY IS NOT AN EXCEL WEB
SHEET.
WE HAVE ESTABLISHED REPOSITORY
AND IN THE ORIGINAL DOCUMENTS WE
PUT OUT BACK IN OCTOBER OF 2020,
THERE WAS A LOT IN THERE ABOUT
WHAT KINDS OF REPOSITORIES WOULD
BE BEST AND LET ME MENTION THAT
A NUMBER OF UNIVERSITIES HAVE
SET UP THEIR OWN REPOSITORIES,
SOME OF THEM ARE OUTSTANDING AND
THE WHOLE IDEA IS JUST TO MAKE
IT'S YEAR FOR THEIR OWN
SCIENTISTS.
THERE ARE MANY KINDS OF REPOS
TIERSRETORIS.SOME HERE AT NIH, THE BEST KN OWN
ONE IS DB GAP RUN BY THE
NATIONAL LIBRARY OF MEDICINE.
THE ONE IN THE LOWER RIGHT
CORNER LINK I OBTAINED DATA
FROM.
THERE ARE SOME FOAs WHERE THE
I.C. SAYS YOU MUST USE XYZ
REPOSITORY.
IT'S A TERM AND CONDITION OF THE
AWARD ITSELF THAT OF COURSE
MAKES DES MAKING TO USE EASY AND
THOSE ARE SPECIALISTS REPOSITORY
AND THERE ARE OTHER RETOSS FOR
TEASE AND INCLUDING
INSTITUTIONAL REPOSITORIES AND
LIBRARIES, WE KNOW THERE ARE A
NUMBER AROUND THE COUNTRY THAT
HAVE BEEN GREAT WORK ON.
PUBMED CENTRAL IS A REPOSITORY
BUT IT'S FOR SMALL DATASETS.
IF YOU HAVE A REL I ACTIVELY
SMALL DATASET YOU CAN POST YOUR
PAPER AND PUBMED CENTRAL YOU CAN
POST YOUR DATA THERE AND IT'S
YOUR REPOSITORY.
AND THEN THERE ARE A VARIETY OF
GENERALIST REPOSITORIES AND I'M
SURE YOU HEARD SOME OF THESE,
WE'RE NOT ENDORSING THEM BUT
THEY'RE OUT THERE AND IN GENERAL
THEY'RE QUITE GOOD.
BUDGET ASKING A BIG ISSUE AND
WE'LL ASK PEOPLE TO PROVIDE US
WITH A BUDGET.
THERE ARE COSTS THAT ARE NEEDED
FOR CURATING OR SHARING DATA AND
COSTS THAT AROUND LAW ABLE THOSE
COSTS WOULD BE NOW CONSIDERED TO
BE PART OF INDIRECTS SO THEY
COMMISSIONED THE NATIONAL
ACADEMY OF SCIENCES TO PUT
TOGETHER A REPORT ON BUDGETING
AND DATA SHARING AND THEY DID
VERY THOUGHTFUL WORK AND WE
ANTICIPATE THAT OVER THE FIRST
YEAR OR SO, OF IMPLEMENTING THIS
POLICY WE'LL LEARN A LOT AND
ABOUT THE COSTS HERE.
THE WAY THE MECHANIC WORK IS
WITH THE APPLICATION, THERE ARE
TWO PARTS.
ONE IS A DATA, THE ACTUAL DATA
SHARING PLAN THAT WOULD BE A
TWO-PAGE DOCUMENT AND WE HAVE A
TEMPLATE FOR THAT AND A BRIEF
DESCRIPTION ALONG WITH A NUMBER
TO HOW MUCH YOU THINK THIS WILL
ACTUALLY COST.
WHEN A GRANT COMES IN IT LOOKS
LIKE THE AGENCY IS INTERESTED IN
FUNDING IT AND IF THEY LIKE IT
WE'RE DONE AND IT'S INCORPORATED
INTO THE TERMS AND CONDITIONS OF
AWARD AND IF NOT, THERE MAY BE
SOME NEGOTIATIONS.
IT'S BASED ON THE DOCUMENT
THAT'S WE PUT OUT IN OCTOBER OF
2020 AND THE PLAN SHOULD BE NO
MORE THAN TWO PAGES IN LENGTH SO
WE HAVE THIS FORMAT PAGE RIGHT
NOW IT'S IN DRAFT FORM BUT WE
HAVE MADE IT AVAILABLE THROUGH
THE NIH GUIDE AND WHEN OMB A
PROVES IT IT WILL BE OFFICIAL.
AND THERE WILL BE A SPECIFIC
PLACE WHEN YOU ARE FILLING OUT
YOUR FORM ELECTRONICALLY TO PUT
THAT PLAN AND IT WILL BE A
SPECIFIC PLACE IN THE BUDGET
SECTION FOR WHERE YOU WOULD PUT
INFORMATION THERE.
WHEN THE PLAN IS APPROVED IT'S A
DETERMINE CONDITION OF AWARD AND
IT'S LIKE ANYTHING ELSE IT WILL
BE FOLLOWED IN PROGRESS REPORTS
AND ENFORCEMENT ACTION AND JUST
LIKE ANY OTHER NON-COMPLIANCE
ISSUES AND WE ARE NOW IN 2022
WHERE APPROACHING THE END OF
2022 THE POLICY IS EFFECTIVE AN
JANUARY 2023.
WE'RE WELL ALONG THE ROADMAP TO
2023.
WE'VE PUT OUT A WEBSITE AND WOVE
PUT OUT WEBINARS AND FAQs AND
THERE SOMEWHERE DRAFT THAT'S WE
PUT OUT ON VARIOUS TOPICS AND WE
ARE PUTTING OUT A GUIDE NOTICE
LAST WEEK ON HARMONIZING THE
DATA MANAGEMENT SHARING POLICY
WITH THE GENOME SHARING POLICY
AND AS WE MOVE FORWARD, WE'LL
THINK ABOUT HOW WE TAKE THIS TO
A HIGHER LEVEL LIKE HOW DO WE
ASSESS THE POLICY AND HOW DO WE
MOVE WHERE SCIENTISTS WANT TO
SHARE THEIR DATA JUST LIKE THEY
WANT TO PUBLISH THE RESULT AND
THAT IS NOT A CHORE OR
REQUIREMENT BUT RATHER AN
INCENTIVE.
THERE ARE INSTITUTIONS TO HELP
THINK ABOUT THIS AND YOUR
COLLEAGUES THINK ABOUT THIS AND
TRY EXISTING RESOURCES WITHIN
NUR INSTITUTES AND WE HAVE SEEN
AMAZING WORK DONE ON DATA
MANAGEMENT DATA SHARING AND DATA
REPOS TOFFEE AND WE SUGGEST CAN
YOU TRY PUTTING, TRY DRAFTING
SOMETHING BASED ON THE WORK THAW
ALREADY HAVE AND MANY PEOPLE
HAVE BEEN ALREADY ENGAGING IN
DATA SHARING FOR A TIME AND
THOSE INDIVIDUALS ARE ALSO A
RESOURCE AND A LOT OF INTEREST
IN THE COMMUNITY ON THIS AND THE
PAPER ITSELF IS QUITE GENERIC
AND IT'S NOT LIMITED TO
COMPUTATIONAL BOYOLOGY AND THIS
IS WRITTEN FROM THE LIBRARY OF
NORTHWESTERN UNIVERSITY AND 10
ROOMS OF THE NCCIH DATA
MANAGEMENT SHARING PLAN AND IT'S
WORTH A KEYED AND THEY'VE DONE
VERY NICE WORK AND MY COLLEAGUES
ARE ENGAGE IN EXTENSIVE OUTREACH
AND WE HAD A WEBINAR WITH LARGE
ATTENDANTS AND WE HAVE ANOTHER
ONE COMING UP ON SEPTEMBER
SEPTEMBER 22nd TO PLEASE
SPREAD THE WORD AND PLEASE JOIN.
THANK YOU VERY MUCH AND I FOR
BEING HERE TODAY AND TO SHARE
THOUGHTS WITH YOU AND I'LL TURN
IT BACK TO YOU, PARTAP.
>> THANK YOU SO MUCH.
WE HAVE TIME FOR QUESTIONS AND
ANSWERS FOR COUNCIL WE HAVE A
FOLLOW-UP PRESENTATION IN THE
IMMEDIATE QUESTIONS ARE ANSWERED
AND BY BY Dr. CRAIG HOPP TO
TALK ABOUT THE SPECIFIC I DO
SMALL WITHIN SUBJECT
COUNTERBALANCE STUDIES LOOKING
AT PHARMACOLOGY AND BEHAVIOR IN
HUMANS.
SO, I DON'T REALLY UP LOAD SO
FAR AND HOW MUCH DOES IT COST
WHERE WOULD THAT KIND OF GO?
IT'S A LOT OF BEHAVIORAL DATA
PRIMARILY.
>> I'M GUESSING THIS IS NOT AN
AREA I AM GUESSING THAT ONE
QUESTION IS HOW BIG ARE YOUR
FILES AND IF THEY'RE SMALL, THE
ANSWER IS PUBMED.
YOU UP LOAD THE DATA THAT BACK
UP THE PAPER.
SO YOU HAVE GOT FIGURES IN YOUR
PAPER AND OR TABLE AND OR
NUMBERS, THOSE DATA THAT
GENERATE THOSE NUMBERS IT'S
EXPECTED AND IF YOU ARE FILES
ARE RELATIVELY SMALL CAN YOU PUT
IT IN PUBMED CENTRAL AND YOU ARE
DONE.
IF YOUR MILES ARE BIGGER, IF
YOUR MILES ARE BIGGER, YOU MIGHT
WANT TO USE A GENERAL
REPOSITORIES LIKE FIGURE SHARE
OR TRIAD AND IT MAY BE BETTER,
I'M NOT REALLY FAMILIAR WITH
THIS SCIENCE, MAYBE THE NEXT
PRESENTATION WE SHOULD FOLLOW-UP
ON THAT AND THE NCCIH PERSON
WILL SAY PAY NO ATTENTION TO
WHAT I JUST SAID.
THEN YOU WILL GET WHAT I'M
TALKING ABOUT.
>> EXCEL SPREAD SHEETS IS NOT
THE WAY --
>> SO, THE THING IS, WHAT IS NOT
APPROPRIATE IS AN EXCEL SPREAD
SHEET ON YOUR LOCAL WEBSITE.
IF YOU UP LOAD A TABLE, AND IT
COULD BE AN EXCEL FORMAT BUT YOU
UP LOAD A TABLE INTO PUBMED
CENTRAL AND THAT'S WHERE IT
SITS, SO NOW PUBMED CENTRAL IS
GOING TO BE RESPONSIBLE FOR
MAINTAINING IT STAYS THERE AND
IT MIGHT BE PERFECTLY FINE.
>> I WAS PART OF A STUDY WHERE
SOMEONE CONTACTED ME VERY
GENERIC STATEMENT, PLEASE, SHARE
YOUR DATA.
IT WAS NOT A VERY NICE E-MAIL
AND I DIDN'T PAY ATTENTION TO IT
BUT I THINK I WAS PART OF THEIR
DATA COLLECTION ON THAT FRONT SO
IT'S JUST, YOU KNOW, I WAS
UNSURE HOW TO RESPOND TO THAT
BUT I GUESS THIS IS GOING TO BE
THE WAVE OF THE FUTURE.
>> THANK YOU, VERY MUCH FOR THAT
PRESENTATION.
I THINK IT WAS A MASSIVELY
IMPORTANT AREA AND WE'VE BEEN ON
BOTH SIDES OF THIS FRUSTRATED BY
LACK OF ACCESS TO DATA BUT ALSO
STRUGGLING WITH GETTING BIG
DATASETS UP INTO THE FORMAT THAT
OTHER PEOPLE CAN USE.
ON THE ONE HAND THERE'S MAKING
SURE DATA PUBLISHED IS AVAILABLE
FOR PEOPLE TO ACCESS USE REAP LA
DATE FINDINGS, EXPAND STUDIES.
ON THE OTHER HAND, THERE'S THE
ISSUES OF THE ITERATION CYCLE.
GETTING DATA UP QUICKLY SO
DISCOVERIES CAN BE MADE MORE
QUICKLY AND PEOPLE AREN'T
WAITING FOR IT.
I'M CURIOUS ABOUT TIMING OF THE
REQUIREMENT AND WHETHER DATA MAY
GET PUT UP BEFORE PUBLICATION OR
MAY REQUIRE TO BE PUT UP BEFORE
WHETHER THERE'S COORDINATION
WITH PRE PRINT POSTING VERSUS
REAL PUBLICATION AND THE BOTH
SIDES OF THIS, ACCESS FOR
INVESTIGATORS TO SPEAK UP THE
REITERATION CYCLE OF DISCOVERY
AND OPENING UP TO BEING SCOOPED
IF YOU HAVE A PUBLISHED THAT.
>> THOSE ARE GREAT QUESTIONS.
THE POLICY IS AT THE TIME OF
PUBLICATION AND I KNOW THERE ARE
SOME JOURNALS AND I PUBLISHED
SOME OF THOSE JOURNALS THAT WHEN
YOU PUBLISH THE PAPER YOU HAVE
TO -- EITHER YOU POST YOUR DATA
WITH US, OR YOU POST THE DATA
SOME PLACE ELSE AND MAKE IT VERY
CLEAR WHERE THE DATA ARE
AVAILABLE SO WHAT THE POLICY
IS -- THE POLICY IS NOT ASKING
YOU TO MAKE DATA AVAILABLE PRIOR
TO PUBLICATION, OR WITH PRE
PRINTS.
I KNOW PEOPLE DO POSTDATA WITH
PRO PRINTS BUT THAT'S VERY NICE
BUT IT'S NOT A -- IT'S NOT A
REQUIREMENT OR EVEN AN
EXPECTATION.
>> GREAT PRESENTATION.
I JUST WANTED TO GET YOUR TAKE
ON THE FAILURE TO COMPLY.
IT SEEMS NOW NIH IS STARTING TO
MOVE IN THE DIRECTION OF PUTTING
BARS OF FUNDING FOR FUTURE
DECISIONS AND OTHER SORT OF
MEASURES TO MAKE AND ENSURE
PEOPLE DO COULD I PLOOM WITH
THICOMPLY WITH THIS POLICY.IT'S UNCLEAR HO W WELL
COMMUNICATED IT IS ACROSS THE
EXTRAMURAL COMMUNITY THIS POLICY
HAS TEETH AND HOW ARE WE DOING
GETTING THAT WORD OUT BECAUSE WE
ARE RUNNING INTO SITUATIONS
WHERE WE ARE GETTING BARS TO
FUNDING NOW AND P.I.s CLAIM
THEY DON'T UNDERSTAND SO I'M
JUST CURIOUS HOW WE'RE DOING ON
MESSAGING THAT AND BECAUSE IT'S
SOMETHING THAT PEOPLE NEED TO
TAKE SERIOUSLY.
>> THANK YOU DAVID.
AND WELL, MAYBE THAT'S PART OF
WHAT WE'RE DOING RIGHT NOW.
CERTAINLY AREAS PEOPLE ARE USED
TO SO AS AN EXAMPLE, SO ONE FORM
OF COMPLIANCE THAT MAY SEEM
SIMPLE AND TRIVIAL IS THAT YOU
HAVE TO TURN YOUR PROGRESS
REPORT.
NOW, THAT ONE IS EASY BECAUSE,
WE'RE NOT GOING TO ISSUE A NON
COMPETING RENEWAL WITHOUT A
PROGRESS REPORT.
NOW, TAKING ANOTHER LEVEL ON
PUBLIC ACCESS TO THE PUBLIC
ACCESS POLICY HAS BEEN AROUND
FOR QUITE A LONG TIME AND WE'RE
NOT GOING TO ISSUE A NON
COMPETING RENEWAL UNLESS ALL THE
PUBLICATIONS THAT ARE
APPROPRIATE FOR PUBLIC ACCESS
ARE NOW IN PUBLIC ACCESS.
AND WE HAVE A BAR TO FUNDING FOR
THAT AND IT'S SOMETHING THAT
PEOPLE HAVE COME TO BE USED TO
AND ONE THAT IS RECENT IS
REGISTRATION FOR CLINICAL TRIALS
SO THE POLICY IS QUITE CLEAR
THAT REGISTRATION HAS TO OCCUR
WITHIN 21 DAYS OF THE FIRST
PATIENT BEING ENROLLED AND SO IF
YOU ARE ENROLLING PATIENTS AND
YOU HAVE NOT REGISTERED THE
TRIAL, WE CANNOT ISSUE A NON
COMPETING RENEWAL AND WE JUST
GOT HIT WITH A RATHER NASTY
AUDIT FROM THE OIG SO, THIS ONE
WE HAVE TO ENFORCE IT.
WE DON'T REALLY HAVE MUCH
DISCRETION THERE SO THE THING IS
IS THAT THEY'RE, WE DO NEED TO
MESSAGE THIS AND THIS IS
IMPORTANT AND THIS IS IMPORTANT
JUST LIKE A NUMBER OF THE OTHER
ITEMS THAT WE'VE JUST TALKED
ABOUT.
>> THANK YOU FOR A GREAT
PRESENTATION.
IN THE EVENT THAT YOU HAVE
MULTIPLE PUBLICATIONS, HOW DO
YOU HANDLE THIS?
>> SO, ONE WAY OF THINKING ABOUT
IT IS WHAT DATA WERE NEEDED TO
SUPPORT THAT PARTICULAR
PUBLICATION AND YOU HAVE A
PUBLICATION WITH TABLES AND
GRAPHICS IN THERE.
THE DATA THAT PRODUCES THAT,
THOSE TABLES AND THOSE GRAPHICS
THAT'S THE DATA THAT NEEDS TO BE
SHARED AT THAT PARTICULAR POINT
IN TIME.
>> THE AIM IS PUBLISH THAT AND
MAKE THAT AVAILABLE?
>> THAT'S RIGHT.
YEAH, THAT'S EXACTLY RIGHT.
IT MAY VERY WELL BE A DIFFERENT
SET OF DATA THAT INTERESTED PRODUCED PAPER
1, 2 AND 3, THAT'S RIGHT.
>> Dr. HARRIS.
>> THAT WAS A GREAT PRESENTATION
AND IT HIT HOME FROM ME.
I'M COMING FROM A BRAIN IMAGING.
WE COLLECT DATA ON BRAIN
ACTIVITY AND THERE'S BEEN SOME
RECENT PUBLICATIONS THAT HAVE
SHOWN YOU NEED LARGE STUDIES TO
GET REPLICABLE, YOU KNOW, GOOD
RESULTS THAT ARE RELIABLE AND
REPEATABLE.
SO I'M WONDERING HOW CAN THE
DATA SHARING HAPPEN IN SUCH A
REPOSITORY WHERE THE DATASETS
ARE QUITE LARGE AND DOES IT MAKE
SENSE TO JUST UP LOAD, YOU KNOW,
LIKE SUM ARY STATISTICS OF A
LARGE DATASET OR THE RAW DATA
WHICH IS WHERE THE DEMONS REALLY
LIE AND YOU KNOW, KEEPING THAT
GOING, MAKING SURE IT IS STABLE,
ACCESSIBLE, IS NOT EASY SO I'M
JUST CURIOUS AS TO LIKE, IN
DATASETS THAT HAVE A LOT OF
INFORMATION HOW IS IT GOING TO
BE OPERATIONALIZED?
>> YEAH, THAT'S A REALLY GREAT
QUESTION SO THERE ARE REPOSITORY
FOR DATA.
THE GENERALIST REPOSITORY LIKE
FIGURE SHARE CAN HANDLE LARGER
DATASETS BUT PROBABLY NOT AS
LARGE AS YOURS AND SO AS AN
EXAMPLE, I DON'T KNOW EXACTLY
WHAT WOULD FIT YOUR PARTICULAR
KIND OF DATA.
BUT, AS AN EXAMPLE, WE HAVE SET
UP CONTRACTS WITH THE BIG CLOUD
PROVIDERS.
WITH AMAZON AND GOOGLE AND THE
IDEA OF THAT IS THAT WE MAKE
CLOUD STORAGE AVAILABLE FOR NIH
FUNDED RESEARCHERS AT
SUBSTANTIAL DISCOUNTS.
NOT ONLY IS THE STORAGE
AVAILABLE BUT WE ALSO MAKE
AVAILABLE HIGH-POWER COMMUTIN COM
COMPUTING AND COMPUTING
CONSULTANTS.
YOU MAY STORE AND MANAGE YOUR
DATA AND THEY ARE YOUR DATA IN A
ROBUST MANNER AND DO IT AT
LOWER COSTS AND ALSO, GAIN SOME
ADVANTAGES FROM COMPUTING POWER
AND COMPUTING CONSULTANTS.
>> THANK YOU.
>> OTHER QUESTIONS FROM COUNCIL
FROM Dr. LAUER?
WE'LL HAVE SECOND -- OH, Dr.
LANGEVIN.
>> Dr. Helene Langevin: I HAVE A
QUICK QUESTION.
THERE ARE SOME JOURNALS THAT ARE
REQUESTING DATA STORAGE PLANS OR
AT THE TIME OF ARTICLE
SUBMISSION AND SOME PEOPLE ARE
GETTING CONFUSIONS ABOUT THAT AS
TO WHETHER THERE'S A REQUIREMENT
TO DEPOSIT THE DATA BEFORE THE
PAPER IS EVEN REVIEWED OR
ACCEPTED AND ARE YOU FAMILIAR
WITH THAT AND IS THAT A SOURCE
OF CONFUSION?
>> WELL, I DON'T KNOW WHETHER
YOUR MEMBERS ARE COUNCIL ARE
JOURNAL EDITOR AND IF YOU ARE I
A POLL JOYS FOR WHAT I'M ABOUT
TO SAY AND I WAS A JOURNAL
EDITOR MYSELF.
JOURNAL WORK IN DIFFERENT WAYS
SO IT CAN CREATE CONFUSION AND I
RECENTLY PUBLISHED A COUPLE OF
PAPERS IN' LIFE AND THEY TOLD ME
AT THE TIME OF SUBMISSION,
WHAT'S YOUR DATA SHARING PLAN
WAS AND I MADE IT ALSO VERY
CLEAR THAT I WASN'T SHARING ANY
DATA UNTIL I GOT AN ACCEPTANCE
LETTER AND THEY WERE FINE WITH
THAT AND THEY DIDN'T HAVE ANY
PROBLEM BUT WE HAD AN
UNDERSTANDING THAT THE DATA, I
DESCRIBED HOW THE DATA WERE
GOING TO BE FORMATTED AND SO
FOURTH AND THE DATA WERE GOING
TO BE IT WAS LIKE, OK, DO IT.
WE'RE NOT GOING TO GO THAT NOW
THAT THE (INAUDIBLE).
>> Dr. Helene Langevin: I LOST I
FOR A SECOND.
IF YOU DON'T READ TOO CAREFULLY
YOU GET A SENSE THAT THEY WANTED
DATA DEPOSITED AHEAD OF TIME AND
"READ ONE OF THESE AND IT MADE
ME WONDER.
>> MY OWN PERSONAL OPINION --
>> DAN: THAT DOESN'T MAKE SENSE,
RIGHT?
THERE'S NO REASON FOR THAT.
>> I AM WILLING TO MAKE A
COMMITMENT THAT IF YOU PUBLISH
MY PAPER, I WILL POST THE DATA.
>> DATA SHARING IS A GREAT IDEA
AND IT'S BEEN IN PLACE FOR A
WHILE.
I'M TRYING TO THINK OF HOW WE
BALANCE TIMELY SHARING OF THE
DATA WITH THE PRODUCTIVITY OF
THE INVESTIGATOR WHO ACTUALLY
COLLECTED IT THESE DATASETS ARE
RICH.
YOU CAN PUBLISH YOUR PRIMARY
HYPOTHESIS AND GET IT OUT BUT
THEN IF YOU SHARE THE DATA, THEN
ALL OF THE EXPLORATORY ANALYSIS
THAW WANT TO DO THAT ACTUALLY
SHOW UP AS PRODUCTIVITY ON YOUR
GRANT, YOU CAN GET SCOOPED BY
SOMEONE WITH A BIGGER
COMPUTATIONALLY EFFECTIVE LAB
AND CAN WE PUT IN SOME
PROTECTION FOR THAT TO GIVE THE
PERSON WHO INVESTED EFFORT IN
COLLECTING THE DATA TO BENEFIT
DIRECTLY FROM IT RATHER THAN
GIVING IT ALL AWAY BEFORE
THEY'VE ACTUALLY GOT
PUBLICATIONS ON THEIR CB.
>> YEAH, SO THIS IS A GREAT
QUESTION.
THIS ISSUE CAME UP, I REMEMBER,
WHEN THE GWAS POLICY WAS BEING
WORKED OUT AND THE DATA HA TO BE
SHARED BUT YOU COULDN'T PUBLISH
OFF THE DATA FOR A PERIOD OF
TIME AND YOU KNOW, OVER TIME,
THAT HAS LARGELY GONE AWAY.
I THINK IN PART, BECAUSE WHILE
THAT CONCERN IS REAL AND IT
DOESN'T HAPPEN AS MUCH ONE MIGHT
THING BECAUSE WHO KNOWS THE DATA
REALLY WELL?
THE PERSON PEOPLE WHO KNOW THE
DATA VERY WELL, THE PEOPLE WHO
GENERATED IT.
SO THEY ALREADY HAVE A MASSIVE
HEAD START AND I DO THINK YOUR
QUESTION BRINGS UP ANOTHER VERY
IMPORTANT POINT, WHICH IS THAT,
WE WITH LIKE TO GET TO AN
ENVIRONMENT IN WHICH SOMEONE
SHARES YOUR DATASET IT'S A, IF
SOMEONE USES THE DATA THAT YOU
ARE SHARING, THAT'S A FEATHER IN
YOUR CAP AND THAT IS LIKE
GETTING 10 CITATIONS TO YOUR
PAPER OR SOMETHING LIKE THAT AND
SO.
>> YOU ARE WILLING TO SHARE YOUR
DATA AND YOU ARE BEGGING PEOPLE
TO USE IT.
>> THAT WOULD BE THE BEST OF ALL
WORLD'S MAKING SURE THAT CREDIT
IS ALLOCATED EVERY BODY.
>> SO, Dr. JEAN LOUIS.
>> I WAS GOING TO SAY AT THE
VERY LEAST, THEY SHOULD GIVE
CREDIT TO THE GRANT.
>> YES, FOUR SURE.
>> WE'LL HAVE ANOTHER
PRESENTATION HERE FOR THE LED BY
Dr. CRAIG HOPP, THE DEPUTY
DIRECTOR OF THE DIVISION OF
EXTRAMURAL RESEARCH AT NCCIH ON
NCCIH'S IMPLEMENTATION OF THIS
AND THEN Dr. LAUER WILL STAY
THROUGH THAT AND WE'LL HAVE THEN
THE FINAL, ANY OTHER QUESTIONS
THAT COME UP THAT CAN BE FIELDED
BY CRAIG OR Dr. LAUER.
>> THANK YOU, HOPEFULLY IF I CAN
SEE MY SCREEN AND I'M IN THE
RIGHT PRESENTATION MODE, I'M
GETTING A NOD SO I'LL GET
STARTED.
JUST TO START, INPUT A HUMBLE,
YOU KNOW, PRESENTER ON BEHALF OF
WHAT IS A MUCH LARGER GROUP AT
NCCIH, THE DATA MANAGEMENT
SHARING GROUP THAT CONTAINS
EIGHT OR NINE MEMBERS FROM
ACROSS NCCIH WHO HAVE BEEN
WORKING DILIGENTLY FOR ABOUT SIX
MONTHS NOW FIGURING OUT HOW IS
NCCIH GOING TO GO ABOUT
IMPLEMENTING THIS POLICY AND YOU
JUST HEARD A GREAT DEAL ABOUT.
WE HAVE A FEW THOUGHTS JUST
ABOUT THIS POLICY IN GENERAL AND
ACKNOWLEDGING THIS IS A NEW
INVESTIGATORS AND THEY'RE
PERHAPS UNCERTAIN AS WE HEARD
AND TALKING ABOUT JUST NOW ABOUT
QUESTIONS ABOUT HOW IT HAS TO BE
APPLIED AND IT'S NEW FOR NIH AS
WELL AND SO WE'RE ALL GOING TO
BE IN THIS BOAT TOGETHER AND IN
CLIMBING THAT LEARNING CURVE AS
THIS GOES INTO EFFECT.
BECAUSE OF THAT, THERE'S
ADJUSTMENT PERIODS FOR BOTH
APPLICANTS AND FOR NIH STAFF
THAT WE WILL HAVE TO, THERE'S
GOING TO BE BUMPS IN THE ROAD
BUT I'M FAIRLY CONFIDENT WE'LL
GET PASSED ALL THAT IN THE
REASON FOR MY CONFIDENCE IS
WE'VE DONE THIS BEFORE.
AND WHEN THE NEED ARISES AND WE
ARE NOT SHY AS YOU HAVE HEARD
EVERY EXAMPLES THAT MENTION
THESE AS WELL AND NEW POLICIES
HAVE BEEN PUT IN PLACE OVER TIME
TO ADDRESS NEEDS AND THOSE HAVE
GONE THROUGH THE SAME PHASE OF
WE WILL THAT HAVE SAME SCENARIO
PLAY ITSELF OUT AGAIN.
BUT NCCIH THERE ARE
IMPLEMENTATION CONSIDERATIONS TO
CONSIDER.
SO THE POLICY THAT Dr. LAUER
PRESENTED I WOULD CALL THE
VANILLA VERSION OF THE POLICY.
IT'S THE BASE MODEL OF THIS DATA
SHARING POLICY AND OTHER
INSTITUTES AND CENTERS HAVE
FLEXIBILITY ON HOW THEY CHOSE TO
IMPLEMENT ASPECTS ABOUT POLICY
AND SO THEY CAN LAYER ON
ADDITIONAL RIGHTS OR ADD A SCOOP
TO THIS CODE OR SPRINKLES OR
OTHER TOPPINGS TO IT AND ONE OF
THE WAYS THEY DO THAT AND THIS
WAS MENTIONED BY Dr. LAUER IS
SOME ICs HAVE REPOSITORIES IN
THE RAMP UP TO IMPLEMENTATION
AND SOME HAVE DEVELOPED THEIR
OWN INTERNAL REPOSITORIES TO
WHICH ALL DATA THAT THEY ARE
GENERATED THROUGH THEIR FUNDING
GOES INTO THE REPOSITORY SO
NCCIH, THIS WORKING GROUP THAT
WE HAVE HAS CONSIDERED ALL THE
OPTIONS AND AT THIS TIME, WE
HAVE CHOSEN THE RIGHTS OR
RESTRICTIONS BEYOND WHAT IS
STATED IN THE POLICY SO NCCI
WILL SERVE THE VANILLA VERSION
OF THIS ICE CREAM CONE.
WE WOULD DO UNDERSTAND THERE'S
THINGS THAT WE NEED TO SHARE AND
THERE ARE SOME CONSIDERATIONS WE
FINALIZED A WEBSITE AND AND I'M
TRYING TO FIND MY MOUSE.
YOU WILL SEE THE THINGS ON OUR
WEBSITE MIRROR THE THINGS ON THE
NIH WEBSITE AND IT'S CALLED
SYNDICATING SO IT'S THE SAME
THING.
YOU CLICK ON THESE LINKS ABOUT
DATA MANAGEMENT AND SHARING THE
DATA YOU WILL GET THE EXACT SAME
WEB PAGE YOU SEE AT THE NIH
WEBSITE AND THERE ARE A COUPLE
PLACES WHERE WE HAVE ELABORATED
WHICH I WILL SAY, ON WHAT IS
AVAILABLE AT THE NIH WEBSITE IN
THE TWO PLACES WE'VE DONE THAT
SPECIFICALLY, THE SECTIONs
CALLED PREPARING YOUR DMA PLAN
AND PREFERRED REPOSITORY SO
WE'RE REPAIRING THE DMS PLAN, WE
TAKE THE IT HAS BEEN STATED IN
NOTICES WHAT DO YOU NEED TO
COVER IN YOUR PLAN.
WE HAVE EXPANDED ON THAT THROUGH
A SERIES OF QUESTIONS AND YOU
SHOULD BE ABLE TO ANSWER THESE
AND EVEN IF THE QUESTION OR THE
ANSWER DOESN'T APPLY, YOU SHOULD
BE ABLE TO STATE THAT IN SOME
WAY SHAPE OF FORM IN YOUR DATA
MANAGEMENT AND SHARING PLAN YOU
SUBMIT.
WE HAVE A LIST OF PREFERRED
REPOSITORY WHICH IS EXACTLY WHAT
THAT MEANS AND AND AND THE SIZE
OF DATA YOU HAVE WHAT WOULD BE
THE APPROPRIATE WEBSITE OR
REPOSITORY TO PUT THAT DATA AND
THIS GOES ALL THE WAY UP TO TWO
TERABYTES OF DATA WE MENTIONED
PUBMED CENTRAL IS APPROPRIATE
WITH SMALL DATASETS.
THE ONE EXCEPTION TO THAT I WILL
POINT OUT IS THE NATURAL
PRODUCTS AND MAGNETIC RESIDENTS
DATABASE AND THIS IS ONE FUNDED
BY NCCIH SO ALL NMR DATA
GENERATED THROUGH NCCIH FUNDING
WE EXPECT TO BE DEPOSITED INTO
THAT REPOSITORY AND OTHERWISE,
THIS IS JUST OUR SUGGESTED LIST
IT'S NOT A REQUIREMENT BUT THERE
IS GOOD REASONS WHY TO USE THESE
FOR SOME CLEAR RAINS THAT MAKE
IT EASY FOR BOTH SIDES TO
DEPOSIT AND FIND AND THERE ARE
TOOLS IN RESOURCES OUTSIDE OF
NIH THAT I WANT TO HIGHLIGHT
HERE.
ONE IS THIS DMP TOOL THAT HAS A
VARIETY OF TEMPLATES BASED ON
WHAT TYPE OF DATA MANAGEMENT
SHARING POLICY YOU ARE TRYING TO
ABIDE BY.
ONE OF THE DROP DOWNS AND THE
NIH VERSION YOU CAN LOOK AT THAT
AND Dr. LAUER MENTIONED ALL
THE LIBRARY RESOURCES OUT THERE
WHERE THERE'S A DATA CURATION
NETWORK DEVELOPED AND THERE ARE
PEOPLE CAN GO THERE AS WELL TO
LEARN MORE ABOUT HOW TO CRAFT A
DATA MANAGEMENT SHARING PLAN AND
SO AS Dr. LAUER DID MENTION
AND I WANT TO HIGHLIGHT AGAIN,
GET IT TATTOOED ON YOUR FOREHEAD
SO YOU DON'T FORGET IT.
THERE'S REPEATED UPDATES AND
THESE ARE SOME OF THE THINGS
THAT GUIDANCE AND RECORDINGS OF
PRIOR WEBINARS SO THIS IS GOING
TO BE THERE'S A SUPPORT TOOL
WITH A TEMPLATESK DOCUMENT SO I
ENCOURAGE FOLKS TO GO THERE AND
AVAIL YOURSELF OF ALL THE
RESOURCE THERE'S IN THAT
WEBSITE.
I WILL GO THROUGH IT JUST
SLIGHTLY MORE DETAIL PERHAPS
ABOUT HOW NCCIH SEES THIS
EVALUATION OF THESE PLANS TAKING
PLACE AND THE VISIT OUT OF THE
RESOURCES OUT THERE AVAILABLE TO
YOU AND AGAIN, THE IMPORTANTLY
Dr. LAWYER MENTIONELAUER MENTIONED THIS BU T IT'S
COMMON TO HAVE SPECIFIC
INSTRUCTIONS IN FUNDING
OPPORTUNITIES ANNOUNCEMENTS THAT
ADDRESS EXACTLY FOR THAT FOA HOW
DO DOES NIH WANT DATA SHARING
AND MANAGEMENT TO BE ADDRESSED.
IF SOME CASES WHEN WE MAKE IT
EASY TO UNDERSTAND HOW TO CRAFT
THAT DATABASE YOU ARE WELCOME TO
CONTACT PROGRAM STAFF AT NCCIH
AND WE WILL HOPEFULLY BE ABLE TO
CLARIFY ANY CONCLUSION THAT
MIGHT BE REMAINING WHEN YOU
REVIEW THE OTHER RESOURCES
AVAILABLE TO YOU.
SO, IN THE HOPEFUL SCENARIO THAT
YOU SUBMIT THE APPLICATIONS AND
IT GETS A FANTASTIC SCORE SUCH
THAT AN AWARD IS ON THE HORIZON
THAT'S WHEN EVALUATION OF THESE
PLANS WILL BEGIN IN EARNEST AND
I WANT TO SET PEOPLE'S MINDS
AT'S AND LIKE OTHER TYPES OF
INFORMATION, THIS IS NOT ONE
SHOT AT THIS AND IF YOU DON'T
GET IT RIGHT, SORRY, YOU ARE NOT
GETTING AN AWARD AND THIS IS
VERY MUCH AN INTRA PROCESS WHEN
WE EVALUATE THESE PLANS AND IF
WE FEEL THAT IT DOESN'T MEET THE
BAR, WE WILL AUGMENT AND REVISE
THE PLAN WHERE IT DOES SATISFY
US AND AN AWARD CAN BE MADE.
JUST TO BE CLEAR, HAVING A
SATISFACTORY PLAN IS A REQUISITE
NOW FOR FUNDING ANY APPLICATION.
NIH BROADLY AND NCCIH
SPECIFICALLY WILL BE ENGAGING IN
THE WIDE RANGE OF TRAINING
EXERCISES TO MAKE SURE THAT AT
LEAST INTERNALLY, WE'RE
IMPLEMENTING THIS POLICY AND
EVALUATING THE PLANS AS
CONSISTENTLY AS POSSIBLE ACROSS
NCCIH SO WE'RE ALL ROWING IN THE
SAME DIRECTION.
WE HAVE A TRANS NIH GROUP TRYING
TO DEVELOP WAYS TO ADDRESS
UNIQUE SCENARIOS.
SO, IF THERE'S A DISAGREEMENT OR
LET'S SAY WHETHER OR NOT IT'S
APPROPRIATE TO SHARE CERTAIN
TYPES OF DATA OR WHETHER THERE'S
CONFUSION ABOUT WHICH REPOSITORY
IS BEST AND THERE WILL BE
RESOURCES AVAILABLE TO HELP
ADJUDICATE SOME OF THOSE STICKY
SITUATIONS.
LASTLY JUST TO RESTATE WHAT
Dr. LAUER SAID, COMPLIANCE
WITH THIS PLAN AND AND IF WE
FIND THAT'S NOT THE CASE,
OBVIOUSLY THEY'RE GOING TO BE
CONSEQUENCES RANGING FROM MINOR
THINGS AND RESTRICTIONS ON
AWARDS UNTIL YOU GET THINGS IN
COMPLIANCE TO PARTICULARLY
EGREGIOUS SCENARIOS, THIS COULD
IMPACT ANY FUTURE AWARDS THAT
YOU OR YOUR INSTITUTES KEEP
GOING BACK TO THESE PLACES AGAIN
AND AGAIN AND TO FIND OUT WHAT
IS NEW.
I WANT TO EMPHASIZE THAT THIS IS
A PROCESS WE'RE STRUGGLING,
WE'RE GOING THROUGH NOW AND IT
WILL BE SECOND R SECOND AND HE USED TO
LIKE NCCIH PROPOSING TO DO
SOMETHING NEW, IS THE JUICE
WORTH THE SQUEEZE AND IN THIS
CASE THE ANSWER IS YES.
THERE ARE SO MANY GREAT REASONS
WHY SHARING DATA IS THE RIGHT
THING TO DO AND I THINK FUTURE
GENERATIONS OF SCIENTISTS WILL
REALLY ALLOWED US FOR TAKING
THIS ACTION AT THIS TIME AND
QUESTIONS FOR Dr. H O.P.P. OR
Dr. LAUER.
>> THAT WAS GREAT.
THANK YOU FOR THE SUMMARY.
I WANTED TO ASK, DO I UNDERSTAND
CORRECTLY -- OOPS.
I DO UNDERSTAND CORRECTLY THAT
THE DATA MANAGEMENT PLAN OR THE
DATA OPEN APP ZESHAN WE'RE
PUTTING TOGETHER IS GOING TO BE
REVIEWED SOMEWHAT LIKE HANDLING
ANIMALS SUBJECTS OR OTHER
ASPECTS OF THE GRANT THAT AREN'T
SCIENTIFIC BUT THAT GET
EVALUATED AND SCORED BY
REVIEWERS AND EVENTUALLY, HAVE
TO BE IN COMPLIANCE BY THE TIME
IT GETS FUNDED.
>> SO IN PART, YES, SO REVIEWERS
WILL NOT BE EVALUATING THE PLAN
ITSELF AND THEY WILL BE LOOKING
AT THE BUDGET SO ARE ALLOWED, AS
WE MENTIONED, YOU ARE ALLOWED TO
MENTION, YOU ARE ALLOWED TO
REQUEST FUNDS BASICALLY TO HELP
DEVELOP THE DATABASE SHARING
PLAN SO, THE REVIEWERS WILL BE
ALLOWED TO COMMENT ON WHETHER
THE BUDGET IS APPROPRIATE FOR
THE ACTIVITIES BUT THEY'RE NOT
REVIEWING THE PLAN AND THEY
WON'T SEEN THE PLAN THAT YOU ARE
SUBMITTING AND IT WILL ONLY BE
ADVISABLE FOR MOST SCENARIOS TO
NIH STAFF AND IN THIS CASE, IT
WILL BE ANNAL GUS TO OTHER
ASPECTS THAT ARE JUST IN TIME
BASIS SO, THINGS LIKE OTHER
SUPPORTS, AND OTHER TYPES OF
ACTIVITIES AND WHERE WORE ASKING
YOU FOR UPDATES, YOU KNOW, AS
WE'RE GETTING READY TO MAKE
CONTINUE AN AWARD, THAT'S WHEN
EVALUATION WILL TAKE PLACE IN
NIH STAFF SO WE WILL NOT BE VEIL
WAITING ALL PLANS AND
APPLICATIONS AND REVIEWERS WILL
NOT EVALUATE THIS PLAN BUT IF AN
AWARD SEEMS POSSIBLE, AT LEAST,
WE WILL BE VALUE WAITING IT AT
THAT TIME AND WE'LL BE
COMMUNICATING WITH YOU IF
THERE'S THINGS THAT NEED TO BE
IMPROVED UPON AND THIS IS VERY
MUCH ANNAL GUS TO INTEGRITY AND
IT'S NOT EXPRESSED DURING REVIEW
BUT SOMETHING THAT WE AT NCCIH
HANDLE VERY MUCH AND IT WILL BE
A VERY FASHION FOR NATURAL
PRODUCTS.
>> I GET IT NOW.
>> JUST TO FOLLOW-UP ON AND
CLARIFY AND EMPHASIZE SO, EVEN
THOUGH YOU HAVE TO SUBMIT YOUR
DATA MANAGEMENT SHARING PLAN AS
PART OF THE APPLICATION, IT'S AN
A SCORED OR CRITERIA THAT
EFFECTS THE REVIEW BY REVIEWERS.
THEY DO NOT SEE THE PLAN YOU
HAVE TO PUT IT IN THE GRANT FROM
THE GET-GO AND IT TIME
INFORMATION AND JUST IN TYPICAL
ASPECT.
Dr. HARRIS.
>> I JUST HAD AN IDEA.
I WAS WONDERING, HOW IS
OVERSIGHT OF DATA FALSE DATA,
HANDLED LIKE IF SOMEONE UP LOADS
DATA AND THEY GO DOWN A RABBIT
TRAIL TO A COUPLE MONTHS TO A
YEAR AND THEY FIND OUT THE DATA
IT WAS UPLOADED WAS NOT RIGHT.
HOW WILL THAT BE MANAGED?
>> THAT'S A PERFECT QUESTION FOR
Dr. LAUER.
FALSE IN FABRICATED OR
DELIBERATELY FALSIFIED.
BY THE WAY, THAT'S WHY ONE OF
THE SAL YOU TORI EFFECTS OF DATA
SHARING IS IT'S BECAUSE OF DATA
SHARING THAT SOME SCANDALS HAVE
BEEN UNEARTHED MUCH FASTER THAN
IN YEARS PAST.
WE FOLLOW OUR STANDARD PROCESSES
FOR INVESTIGATING SCIENTIFIC
MISCONDUCT.
WE'VE BEEN DOWN THIS ROUTE
BEFORE WHERE FALSIFIED DATA WERE
DISCOVERED BECAUSE OF THE DATA
SHARING POLICY AND PERHAPS THE
CASE THAT IS BEST KNOWN WAS
DANIELLE POTTYCASE AT DUKE
UNIVERSITY AND THE WAY THAT ALL
STARTED WAS THAT THEY WERE
REQUIRED TO SHARE DATA, THERE
WERE CERTAIN REQUIREMENTS ABOUT
THE CELL LINES THEY WERE USING
SO THEY WERE REQUIRED TO SHARE
THE DATA AND SO THERE WERE
PEOPLE AT MD ANDERSON TRYING TO
REPLICATE AND DISCOVER ALL KINDS
OF PROBLEMS AND THAT'S WHAT
STARTED THE WHOLE THING.
I THINK THE SECOND THING YOU ARE
TALKING ABOUT IS MORE COMMON
THEY MY MIGHT WRITE ADDENDUM OF
WHAT THEY'RE DOING AND WHAT
THEY'RE FINDING.
>> I GUESS I WONDER IF THEY
WOULD GO BACK TO THAT DATA AND
CHANGE IT IN THE DATABASE SO
IT'S CORRECT FOR FUTURE USERS OR
NOT?
>> THAT'S A GOOD QUESTION.
THAT MAY DEPEND UPON THE
POLICIES OF THE REPOSITORY AND
OR THE POLICIES OF THE JOURNAL
AND WHAT SOME DO IS A STORE A
VERSION SO THIS IS THE VERSION
THAT WAS DEPOSITED ON JANUARY
THE SECOND AND THIS WAS THE
VERSION THAT WAS DEPOSITED ON
JUNE THE FIRST.
AND SO THEN YOU KNOW, SOMEONE
WHO IS ACCESSING THE DATA WILL
SAY OK, I USED THIS PARTICULAR
SNAPSHOT IN TIME AND THERE WOULD
BE READ-ME DOCUMENT THAT'S GO
ALONG WITH IT THAT MIGHT SAY
SOMETHING LIKE, WE'VE DISCOVERED
POTENTIAL OR WE HAVE CLEANED UP
DATA FROM THE JANUARY.
>> THANK YOU.
>>
>> Dr. WEBBER.
>> HI, I'M WONDERING IF YOU
COULD SPEAK A LITTLE BIT ABOUT
THE NEW DATA MANAGEMENT AND
SHARING PLAN THAT NEEDS TO BE
INCLUDED IN ALL APPLICATIONS
VERSUS THE DATA SAFETY AND
MONITORING PLANS THAT HAVE VERY
SIMILAR ACRONYMS BUT AREN'T
NECESSARILY REQUIRED FOR ALL
APPLICATIONS AND IS THAT CORRECT
ONLY CLINICAL TRIALS DATA NEEDS
A DSMP?
CAN YOU CLARIFY THOSE TWO
DIFFERENT PARTS?
>> YEAH, ISN'T THAT TOO BAD THEY
HAVE THE SAME ACRONYM, OK, THE
DATA SHARING AND MANAGEMENT,
DATA MANAGEMENT SHARING PLAN IS
REQUIRED FOR ANY APPLICATIONS IN
WHICH DATA WILL BE GENERATED SO,
THERE'S CERTAIN KINDS OF
APPLICATIONS WHERE DATA WILL NOT
BE GENERATED LIKE A TRAINING
PROGRAM.
OR A CONSTRUCTION GRANTOR
RESOURCE GRANT LIKE AN R24.
BUT, MOST NIH GRANTS AND I'M
GOING TO GUESS WELL OVER 90%
INVOLVED THE GENERATION OF SOME
KIND OF DATA AND WILL REQUIRE A
DATA MANAGEMENT AND SHARING
PLAN.
NOW FOR DATA MONITORING AND
SAFETY, THAT APPLIES TO TRIALS
AND THERE, YOU KNOW, IT DEPENDS.
WHAT KIND OF PLAN GETS SUBMITTED
DEPENDS ON THE NATURE OF THE
TRIAL IF IT'S SOMETHING SIMPLE,
WE'LL REPORT BACK ON OUR
PROGRESS REPORT ONCE A YEAR IF
IT'S ACCOMPLISHED MULTI-CENTER
STUDY WE'LL SET UP A DSMB AND DO
ALL THE USUAL THINGS THAT
DSMBs DO.
>> THANK YOU.
WILL THESE ACRONYMS REMAIN THE
SAME?
[LAUGHTER]
YOU KNOW, YEAH, THERE SHOULD BE
A WHOLE STUDY LIKE A WHOLE
SCIENCE OF ACRONYM KNOWLEDGE.
I'M A CARDIOLOGIST SO WHEN I
HEAR M.S., GOES THROUGH MY HEAD
IS HIGH TRAL STENOSIS.
MOST PEOPLE THINK OF A DIFFERENT
DISEASE AND SO IT IS WHAT IT IS.
>> IN THIS CASE, THERE ARE TWO
PROCESSES THAT ARE SO --
>> WELL THEY'RE SLIGHTLY
DIFFERENT ALTHOUGH, IF YOU ARE
DYSLEXIC IT DOESN'T HELP.
IF DATA IS SHARING, DATA SAFETY
IN MONITORING SO IT'S DSM WHERE
DATA MANAGEMENT AND SHARING
WHICH IS DMS.
>> IT'S REVERSED, OH, OK, THAT
HELPS.
>> YEAH, MAYBE IT HELPS.
>> WE HAVE JUST A COUPLE MINUTES
LEFT AND ANY FURTHER QUESTIONS
BY COUNCIL MEMBERS OR STAFF?
>> ANY ONE IS MVP AND IT'S A
MINIMAL LEVLY VIABLE PRODUCT.
>> I WAS GOING TO GO WITH MOST
VALUABLE PLAYER.
[LAUGHTER]
>> THAT TOO.
MOST VALUABLE PLAYER.
THERE YOU GO.
THERE YOU HAVE IT.
>> ALL RIGHT.
WELL, THANK YOU Dr. LAWYER SO
MUCH AND THIS IS JUST FABULOUS
AND WE REALLY APPRECIATE YOU
PROVIDING THE REVIEW AND TO
Dr. HOPP AS WELL.
>> THANK YOU VERY MUCH AND ENJOY
THE REST OF YOUR MEETING.
>> THANK YOU.
>> THANK YOU SO MUCH.
Dr. LANGEVIN BACK TO YOU.
>> Dr. Helene Langevin: SO I'M
VERY EXCITED TO BE SHARING WITH
YOU SOME NEW DEVELOPMENTS AND
WHOLE PERSON HEALTH STORY WHICH
SO LET'S SHARE MY SCREEN.
THIS IS SOMETHING THAT WILL BE,
OOPS, WE DON'T WANT TO SEE MY
VIDEO.
CAN PEOPLE SEE THIS.
>> THE NARRATIVE YOU'VE BEEN
PART OF AND WE KEPT YOU UPDATED
ON THIS AND WE SOUGHT YOUR
ADVICE AND COUNCIL EVERY STEP OF
THE WAY AND IN OUR QUEST TO SORT
OF DEVELOP A PROGRAM IN WHOLE
PERSON HEALTH, THERE WERE A LOT
OF STEPS THAT WE'VE TAKEN SO,
ONE OF THE FIRST STEPS IS THAT
WE REALLY KIND OF WANTED TO PUT
TOGETHER GROSS OF STAKEHOLDERS
AND PARTNERS AND ONE OF THESE
GROUPS WERE INTERNAL TO NIH SO
THESE ARE ALL THE NIH INSTITUTE
CENTERS AND OFFICES WE'VE
ASSEMBLED IN OUR WORKING GROUP
THROUGH WHOLE PERSON HEALTH
RESEARCH WITHIN NIH AND YOU CAN
SEE ALL THE VARIOUS INSTITUTES
AND CENTERS AND WE DELIBERATE
RECHOSE PARTNERS THAT ALREADY
HAD A MISSION THAT WAS NOT
EITHER ORGAN OR
DISEASED-SPECIFIC.
YOU CAN SEE HERE AHA, CHILD
HEALTH, NURSING, MINORITY
HEALTH, ENVIRONMENT,
ENGINEERING, SO YOU CAN SEE THAT
THESE AND OF COURSE THE OFFICES
OF DISEASE PREVENTION AND
BEHAVIOR, WOMEN'S HEALTH, AND
NUTRITION.
SO, THESE WERE OUR INTERNAL
PARTNERS AND THEN WE HAVE ALSO A
SET OF INSTITUTIONS AND FROM THE
OUTSIDE OF NIH WHO ALSO HAVE A
MISSION THAT IS SORT OF RELATED
TO WHOLE PERSON HEALTH FOR
MILITARY PERFORMANCE AND
LIFESTYLE MEDICINE CAN YOU SEE
THERE AND THESE ARE OUR GROUP OF
EXTERNAL STAKEHOLDERS THAT HAVE
BEEN ADVISING ON US ON
DEVELOPING THIS PLANNED AGENDA
AND NOW THE NEXT STEP WAS TO SAY
OK, HOW ARE WE GOING TO DO
RESEARCH ON WHOLE PERSON HEALTH.
IT'S A LOT EASIER AND THE EFFECT
OF A SINGLE DRUG ON A SINGLE
RECEPTOR FOR MOLECULE TO STUDY
THE EFFECT OF LIFESTYLE AND YOGA
OR THESE MULTI COMPONENT
INTERVENTIONS WE'VE BEEN TALKING
ABOUT SO HOW DO YOU DO THAT?
SO WE WORK TOGETHER WITH OUR
PARTNERS AND ESPECIALLY ALL THE
NIH INSTITUTES AND CENTERS AND
PARTICIPATED IN OUR WORKING
PLANNING GROUP FOR THIS
WONDERFUL WORKSHOP THAT WE'VE
HAD LAST YEAR AND ON WHOLE
PERSON RESEARCH AND THIS
WORKSHOP ADDRESSED HOW TO STUDY
INTERCONNECTED SYSTEMS AND THE
EFFECT OF EITHER SINGLE OR MULTI
COMPONENT INTERVENTION ON THE
SYSTEM AND IT'S VERY SUCCESSFUL
WORKSHOP AND ANY OF YOU WHO HAVE
NOT HAD A CHANCE TO TAKE A LOOK
AND WE SAW A VIDEO CAST ON OUR
WEBSITE AND ONE OF THE QUESTIONS
THAT KEPT COMING UP, A LOT, IN
THE DISCUSSIONS, DURING THE
WORKSHOP AND ALSO HERE AT
COUNCIL IS HOW DO YOU ACTUALLY
MEASURE WHATEVER THE OUTCOMES,
WHAT KIND OF OUTCOMES DO YOU
NEED TO CAPTURE WHOLE PERSON
HEALTH, RIGHT.
AND SO FOR THAT REASON, WE WENT
THROUGH A PROCESS WHERE WE, WELL
FIRST OF ALL, WE THOUGHT, WELL
NEED A FRAMEWORK, WE THROUGH
STUFF AT THE WALL THINKING IF
YOU HAD TO DEFINE A SET OF
FACTORS THAT WOULD DEFINE WHOLE
PERSON HEALTH, FIRST OF ALL,
WHAT KIND OF FACTORS WOULD THEY
BE?
THEY WOULD HAVE TO BE A
BIOLOGICAL FACTOR AND SOME
ENVIRONMENTAL BEHAVIORAL, SOCIAL
AND ENVIRONMENTAL AND THEY WOULD
COVER ALL THE VARIOUS DOMAINS
AND NUTRITIONAL, PHYSICAL,
PSYCHOLOGICAL.
AND IT WOULD HAVE TO BE
DIFFERENT KINDS OF FACTORS AND
SO THESE ARE JUST, WE JUST KIND
OF TOOK A STAB AT IT AND YOU
WOULDN'T WANT SO MANY FACTORS
THAT YOU END UP HAVING, BECAUSE
EACH OF THESE FACTORS WITHIN THE
ASSOCIATED WITH MEASUREMENTS AND
YOU DON'T WANT A THOUSAND
MEASUREMENTS, BUT YOU DON'T WANT
TOO FEW EITHER.
YOU WANT TO CAPTURE THE WHOLE SO
WE SHE'D A REQUEST FOR
INFORMATION ON IDENTIFYING A SET
OF DETERMINANTS FOR WHOLE PERSON
HEALTH AND THE KNEW THIS TO THE
GENERAL COMMUNITY AND WE ASKED
PEOPLE, GIVE US A LIST OF -- WE
GAVE A GUIDELINE OF NO MORE THAN
20, RIGHT.
FACTORS, WE DIDN'T WANT 100 BUT
WE WANTED LIMIT AND WE SAID IF
YOU HAD TO PICK 20 FACTORS THAT
ARE IMPORTANT, TO CAPTURE THE
HALF OF A WHOLE PERSON, WHAT
WOULD THEY BE?
WE WERE CURIOUS TO SEE HOW MUCH
OVERLAP THERE WOULD BE AND WE
DEFINED THESE ARE FACTORS THAT
CAN INFLUENCE HEALTH AS A
POSITIVELY OR NEGATIVELY AND
ENCOMPASS THE FULL CONTINUUM OF
BIOLOGICAL BEHAVIORAL AND SOCIAL
AND ENVIRONMENT.
SO, WE HAD A VERY NICE RESPONSE,
THIS IS WHAT WE ASKED PEOPLE TO
DO.
PROVIDE A LIST OF UP TO 20
FACTORS.
WHEN POSSIBLE, WE ASKED THAT
THESE PROPOSED DETERMINANTS
WOULD BE LISTED AS MEDICAL
SUBJECT HEADINGS, WE WERE JUST
THINKING AHEAD OF HOW TO HANDLE
ALL OF THIS AND THEN WE ALSO
INDICATED THAT EVENTUALLY BUT WE
DIDN'T ASK POEM TO PROVIDE THE
COMMON ELEMENTS YET AND WE JUST
WANTED TO HAVE THE FACTORS AND
WE STARTED DRAWING UP A LIST OF
COMMON DATA ELEMENT AND WE THINK
IT'S IMPORTANT BECAUSE WE WANTED
TO HAVE SOMETHING THAT WOULD BE
INTER OPERABLE THAT COULD BE
USED ACROSS MULTIPLE STUDIES SO
WE WANTED TO THINK ABOUT THIS
VERY CAREFULLY.
WE HAD 83 INDIVIDUALS RESPOND
WHICH WE THINK IS A VERY GO
AHEAD RESPONSE AS FAR AS SURVEYS
LIKE THIS AND IT'S REALLY QUITE
GOOD AND THERE WAS PEOPLE IT WAS
SEVEN NUMBERS LISTED PER
RESPONDENT.
SOME PEOPLE GAVE UP TO 20 AND
SOME PEOPLE GAVE VERY FEW.
THERE WAS A TOTAL NUMBER OF 249
TOTAL NUMBER OF UNIQUE
DETERMINANTS IDENTIFIED AND WE
KIND OF MAPPED THESE OUT AND AS
YOU CAN SEE, THIS IS KIND OF
WHAT WE SAW THE KINDS OF
DETERMINANTS THAT WERE VERY MUCH
SIMILAR TO THE ONES THAT WE HAD
ON THAT CIRCLE DIAGRAM.
THE KIND OF THINGS YOU WOULD
EXPECT.
SLEEP, EXERCISE, FOOD AND DIET,
THERE WAS A LOT OF RELIGION,
SOCIAL SUPPORT, HEALTH SERVICES,
MINDFULNESS, MENTAL HEALTH AND
LEISURE ACTIVITY AND THE THINGS
THAT YOU WOULD EXPECT AND IT WAS
INTERESTING THAT WHEN WE STARTED
SLEEP WAS NUMBER ONE AND NUMBER
TWO ECONOMIC SITUATION AND YOU
GO DOWN THE LIST AND THERE WAS
NO BIG, WE WERE LOOK FOR THIS
SORT OF GROUPS OUR THINGS WE WON
HAVE THAT WE WOULD HAVE
FORGOTTEN OR OMITTED IN OUR
ORIGINAL AND WE'RE NOT REALLY.
EVERYTHING THAT PEOPLE THOUGHT
ABOUT WERE THE SAME KINDS OF
THINGS THAT WE WERE THINKING
ABOUT ORIGINALLY AND THERE WERE
VERY FEW THINGS WE HAD ON OUR
LIST THAT WAS NOT MENTIONED EARL
SO IT WAS A NICE CORRESPONDENTS
WITH THE THING WE EXPECTED SO
HERE WHAT WE ATTEMPT TODAY DO IS
MAP OUT THESE MAJOR CATAGORIES
ACCORDING TO THE FACTORS
ACCORDING TO THE MAJOR
CATEGORIES SO FOR EXAMPLE, AT
THE TOP, YOU WOULD SEE HERE,
DEMOGRAPHICS AND GENETICS AND
THE THINGS, AGE, SEX, GENDER
RACE, ETHNICITY BASICALLY AND
GENETICS IN HERE AND THE NEXT
CATEGORY DOWN WOULD BE THE GROUP
OF SOCIAL AND ENVIRONMENTAL
DETERMINANTS AND SO THESE ARE
VERY, VERY SIMILAR IN FACT
ALMOST IDENTICAL TO THE KINDS OF
PERMANENT YOU SEE IN OTHER
EFFORTS ATTEMPTED TO PUT
TOGETHER DATASETS FOR SOCIAL
DETERMINANTS AND SOCIAL
DETERMINANTS OF HEALTH AND I'LL
GIVE YOU AN EXAMPLE OF THAT IN
JUST A MINUTE.
SO NEIGHBORHOOD AND BUILT
ENVIRONMENT HEALTHCARE ACCESS,
THIS IS VER BAIT UM TAKEN FROM
THESE SOCIAL DETERMINANTS OF
HEALTH COLLECTIONS FROM THIS AND
FROM THE HEALTH DOT GOVERNMENT
FOR EXAMPLE AND THERE'S ALSO
CURRENTLY A EFFORT LED BY THE
NCCIH FOR MINORITY HEALTH AND
HEALTH DISPARITIES AND NATIONAL
INSTITUTE AND TO DETERMINE A SET
OF DETERMINANTS FOR SOCIAL
DETERMINANTS OF HEALTH AND
THAT'S EXACTLY THAT FOR THIS
PORTION.
I HAPPEN TO SIT ON THE COMMITTEE
THAT OVERSEES THIS AND VERY
SPECIFICALLY, THEY ARE
RESTRICTING THEMSELVES TO THE
SOCIAL AND ENVIRONMENTAL
DETERMINANTS AND THEY ARE NOT
ADDRESSING BEHAVIOR AND THEY'RE
NOT ADDRESSING THE BOY OLE CAL
FACTORS SO WHAT THAT MEANS IS
THAT WE WANT TO ALIGN TO WHAT
THIS PARTICULAR COMMIT SEE DOING
BUT WE WANT TO EXPAND OURS TO
INCLUDE THE BEHAVIOR AND THE
BIOLOGY AS WELL.
IT'S NOT GOING TO DUPLICATE OF
THE EFFORTS OF THE SOCIAL
DETERMINANTS OF HEALTH BUT IT
WILL BE CONGRUENT WITH IT SO
THIS IS VERY IMPORTANT AND
NUTRITION IS A COLLECTIVE TEE
AND THE PSYCHOLOGICAL SPIRITUAL
SO THIS IS AN AREA WHERE THERE'S
LESS ALREADY, YOU KNOW, LESS OF
THIS ALREADY EXISTING IN TERMS
OF THESE DATASETS TO BE
INCOMPLETE AND WE HAVE A LOT OF
PLACES WHERE PEOPLE MENTION
DIET, PHYSICAL ACTIVITY, BUT
THEN SLEEP IS MISSING THERE'S NO
MENTION OF STRESS AND OTHER
PLACES FOCUS MORE ON SUBSTANCE
USE, SMOKING AND ALCOHOL.
IF YOU LOOK AT WHAT IS OUT THERE
IN THE LITERATURE, AGAIN, THIS
COOL HIT LIFESTYLE RISK FACTOR
FOR THE CDC AND THE ATTRITION,
PHYSICAL ACTIVITY, SMOKING,
ALCOHOL AND STRESS IS SOMETIMES
MISSING, A LOT OF TIMES MISSING,
STRESS MANAGEMENT AND SLEEP SO
YOU THINK THAT THIS IS AN AREA
WHERE WE REALLY CAN HELP
BRINGING THESE THINGS
INTEGRATING TOGETHER AND IF YOU
GO BACK, I ACTUALLY SHOULD MAKE
COMMENTS ABOUT THESE OTHER
COLUMNS HERE AND SO FOR EACH
THESE DETERMINANTS WE LISTED
CATEGORIES OF DATA THAT YOU
FIND.
THIS IS BY NO MEANS SUPPOSED TO
BE EXHAUSTED RIGHT NOW.
THIS IS JUST A FIRST YES IS WHAT
TYPES OF DATA YOU COULD SELECT.
SO YOU COULD HAVE PATIENT
REPORTED OUTCOMES, SURVEYS, YOU
COULD ASK PEOPLE QUESTIONNAIRES
AND HOW DO YOU FEEL ABOUT YOUR
SAFETY OF YOUR HOME ENVIRONMENT?
DO YOU HAVE ACCESS TO YOUR
HOUSING SITUATION?
DO YOU HAVE ACCESS TO GREEN
SPACES, WE CAN ALSO GET SOME OF
THAT AND SPACIAL DATA AND YOU
COULD GET SOME INFORMATION FROM
TOX COL GOUGH HAIR SAMPLE AND
WHEN IT GETS TO THIS CATEGORY OF
BEHAVIOR AND YOU CAN LOOK AT
HYBRID VARIABILITY FROM YOUR
SMART WATCHES AND THIS IS
ANOTHER PLACE WHERE THERE COULD
BE DATA THAT COULD BE
INTEGRATED.
SO NOW LET'S LOOK AT THIS
BIOLOGICAL OUTCOMES.
THIS IS THE CATEGORY THAT REALLY
GAVE US A LOT OF THOUGHT AND
PAUSE AS TO HOW, WHERE WOULD YOU
PUT THIS CATEGORY AND A LOT OF
THIS OR NOT LITERALLY THE SAME
KIND OF NOT FACTORS THAT
INTEREST YOUR HEALTH SO MUCH AS
OUTCOMES, RIGHT.
YOUR MEASUREMENTS.
YOUR HEMOGLOBIN, YOUR LIPID
LEVELS, YOUR BLOOD PRESSURE,
YOUR MEASUREMENTS THAT YOU CAN
GET FROM A BLOOD SAMPLE OR FROM
MORE COMPLEX MEASUREMENTS THAT
YOU MIGHT NOT GET UNLESS IF YOU
DO RESOURCE WHERE CAN YOU
MEASURE SOMEONE'S CARDIAC OUTPUT
PRELIMINARY FUNCTIONS AND GRIP
STRENGTH AND THOSE KINDS OF
THINGS.
SO, THESE ARE IMPORTANT BECAUSE
YOU WANT TO BE ABLE TO CAPTURE
THE PHYSIOLOGY AS WELL AS THE
BEHAVIOR AND SO THIS IS WHERE WE
LOOKED AT THE LITERATURE AND WE
FOUND SOME REALLY INTERESTING
THINGS AND PART OF THIS WAS
SHOWED UP AT OUR WORKSHOP SO WE
HAD A PRESENTATION AT OUR
WORKSHOP FOR WHOLE PERSON HEALTH
BY Dr. TERRY MOFFETT WHO FROM
DOWN WHO DOES WONDERFUL RESEARCH
ON THE BIOLOGICAL PACE OF AGING
AND THEY COLLECT A SET OF
MEASUREMENTS IN ADULTS AND WE
CAN START EARLY, AGE 26 AND WHAT
THEY SEE IS THAT CAN YOU DEVELOP
YOU CAN SEE HERE VERY MUCH AND
YOU MAY NOT BE ABLE TO REACH
THIS AND BLOOD PRESSURE, BLOOD
LIPIDS, PRELIMINARY FUNCTION
TEST AND FASTING GLUCOSE, ET
CETERA.
SO, ON THE RIGHT HERE, MORE
PHYSICAL BALANCE.
GRIP STRENGTH, STANDING BALANCE,
WHAT IS THIS, GATE SPEED, ET
CETERA YOU CAN MEASURE VARIOUS
ASPECTS OF SOMEONE'S PHYSIOLOGY
DEPENDING ON HOW FANCY YOU WANT
TO GET.
IF YOUR STUDY ONLY HAS ACCESS TO
ONE BLOOD SAMPLE, OBVIOUSLY GATE
SPEED BUT YOU MIGHT BE ABLE TO
DO A NUMBER OF MEASURES THAT END
UP ON HERE WHAT THEY SHOWED IN
THE STUDY WHICH WAS CENTERING IS
THAT WHEN YOU PUT ALL OF THOSE
MEASUREMENTS TOGETHER, YOU GET A
SENSE OF WHAT KIND OF AGING
TRAJECTORY THEY'RE IN AND WE
THINK THIS AGING TRAJECTORY
WOULD BE RELATED TO HEALTH
BECAUSE FOR EXAMPLE YOU GET
OLDER AND A LOT OF THESE
BIOMARKERS ARE CHANGING OVER
TIME BUT YOU START GAINING A
LITTLE WEIGHT, YOU START MAYBE
DEVELOPING SOME PRE DIABETES AND
THAT IS GOING TO INFLUENCE A LOT
OF THESE MEASUREMENTS AS WELL.
AND THOSE ARE THINGS THAT ARE
MODIFIABLE AND SO THAT IF YOU
START MAYBE REALIZING YOU NEED
YOUR EXERCISE MORE OR IMPROVE
YOUR DIET OR MAYBE MANAGE YOUR
STRESS, YOU MIGHT BE ABLE TO
BEND THAT CURVE BACK AND
RECORRECT YOUR AGING TRAJECTORY.
SO THIS IS EXCITING FROM THE
POINT OF VIEW OF NOT JUST HEALTH
RECEIPRESTORATION.
THE TWO PROCESSES WILL BE
RELATED.
SO HERE IS WHERE WE ARE RIGHT
NOW.
SO WE TOOK THESE FACTORS WHICH
WE SHOWED YOU ON THAT COLUMN ON
THE LEFT AND AND PURPOSELY TO
PUT THEM AROUND THE CIRCLE, I'LL
TELL YOU WHY IN A MINUTE.
WE NEED TO CAPTURE THE
PHYSIOLOGY SO, THE WAY WE
CONCEPTUALIZE THAT IS PUTTING
THESE MEASUREMENTS THAT
REPRESENT THE FUNCTION OF ALL
THESE VARIOUS GEOLOGICAL SYSTEMS
AT THE CENTER OF THIS CIRCLE TO
SORT OF SHOW THAT THERE ARE
VARIOUS LEVELS, RIGHT, OF WHAT
CAN YOU DO.
YOU CAN LOOKED AT THE FACTORS
AND OUTCOMES AND YOU LOOK AT
BOTH.
AND THIS IS ALSO A DOCTOR JUST
SENT US THIS INTERESTING ARTICLE
A COUPLE OF DAYS AGO ABOUT SOME
MEASUREMENTS AND THAT AND MAYBE
THEN YOU CAN TELL US, GIVE US
SOME COMMENTS AFTER THIS.
IN TERMS OF CAPTURING WITH A FEW
SMALL NUMBER OF QUESTIONS, GET
PEOPLE TO GIVE US A QUICK TOUCH
POINT OF HOW THEY'RE DOING IN
TERMS OF THEIR OVER ALL HEALTH
AND WELLBEING WHICH THESE
VARIOUS FACTORS MAY NOT GET TO
SO WE WERE THINKING THERE MAY BE
SOME VALUE HERE TO ADD ANOTHER
CIRCLE TO THIS AND WE WERE
THINKING PUTTING IT IN THE
MIDDLE.
BASICALLY, ASKING PEOPLE HOW ARE
YOU DOING.
HOW ARE YOU FEELING?
AND GETTING A SENSE OF THEIR
OVER ALL HEALTH.
IT'S SOMETHING WE'RE THINKING
ABOUT.
NOW MAYBE WE'RE ADDING TO THIS.
WHERE THIS CIRCLE FITS ON OUR,
WE THINK IN OUR OVER ALL THE
WHOLE PERSON HEALTH THERE'S A
POTENTIAL FOR IN CORPORATING,
RIGHT, THIS ZEST DETERMINANTS
AND WITH OUR WHOLE CONCEPT OF
WHOLE PERSON HEALTH AND SO THIS
IS HOW WE TRIED TO PUT IT
TOGETHER WHERE, YOU KNOW, YOU
HAVE AN INDIVIDUAL AND YOU HAVE
THESE VARIOUS DIFFERENT DOMAINS
AND THEN WITHIN THESE DOMAINS,
YOU HAVE THESE FACTORS THAT
INFLUENCE HEALTH AND THEN YOU
HAVE ASSOCIATED OUTCOMES AND
IT'S INTERESTING TO COMPARE THIS
TO WHAT IS ALREADY THERE SO IF
YOU LOOK AT THE V.A., AND YOU
LOOK AT -- EXCUSE ME.
YOU LOOK AT THE VARIOUS FACTORS
THAT ARE PART OF THE WHOLE
HEALTH, AND THEN YOU ALSO LOOK
AT THE CONSORTIUM FOR HEALTH AND
MILITARY PERFORMANCE THERE'S A
CIRCLE THEME AT THESE VARIOUS
FACTORS AND VERY MUCH SIMILAR
AND IF YOU LOOK AT THE ARMY
MEDICINE MOVE TO HEALTH, AGAIN,
THESE SAME THEMES KEEP COMING
BACK AND THEN WE FOUND A COUPLE
OTHERS, THERE'S ONE FROM THE
CDC, CENTER FOR DISEASE CONTROL
AND PREVENTION AND AGAIN, THIS
VERY SIMILAR FACTORS DID THEN
COMPARING THEM WITH THE DOD AND
CHAP AND VA AND IF WE LOOK
ACROSS EACH OF THESE LINES, LOOK
HOW SIMILAR THIS IS.
THERE'S REALLY NO BIG GAPS.
THERE'S ONE PLACE THAT IT STOOD
OUT IS SUBSTANCE USE, THAT IS
NOT MENTIONED IN THESE AND
PROBABLY BECAUSE IT WAS KIND OF
FOLDED INTO OTHER DOMAINS AND
AND THIS IS STRENGTH IN THE
EMOTIONAL POWER OF MIND.
PHYSICAL ACTIVITIES AND PRETTY
MUCH THERE AND NUTRITION IS
THERE AND FINANCIAL SECURITY IS
NOT MENTIONED ACROSS THE BOARD
AND EDUCATIONAL, DEVELOPMENT,
PRETTY MUCH PERSONAL
DEVELOPMENT.
HEALTHCARE SERVICES IS MENTIONED
AND NEIGHBORHOOD AND BUILT
ENVIRONMENT SO YOU CAN SEE
THERE'S A LOT OF CONCORDANCE
HERE AND IT GAVE US THE SENSE
THAT WE'RE ALL TALKING ABOUT THE
SAME THING.
SO WHAT'S OUR NEXT STEP.
SO, WE SEE A PRETTY CONFIDENT
NOW THAT WE WANT TO MOVE FORWARD
FOR DEFINING THE SET OF COMMON
DATA ELEMENTS FROM THE POINT OF
VIEW OF RESEARCH, RIGHT.
THIS IS NOT, RIGHT NOW WE'RE
REALLY FOCUSING ON HOW WE'LL
MEASURE THIS SO WE'RE GOING TO
START WITH EACH OF THESE FACTORS
AND WE'LL DEVELOP TYPES OF DATA
LIKE WE SAID.
AND WEARABLE DATA, ET CETERA,
HOW DO YOU BUILD A SET THAT
WOULD BE COMPACT ENOUGH THAT IT
WOULD NOT BE TOTALLY UNWIELDING
BUT YET HOLISTIC ENOUGH THAT IT
WOULD REALLY CAPTURE THE WHOLE
SO WE HAVEN'T ENGAGE ON THIS
BEFORE WE GO AND HE WANTED TO
HAVE YOUR INPUT AND WE REALLY
WANTED TO GET A SENSE FROM YOU
ALL AS TO FIRST OF ALL, HOW DO
YOU THINK WE'RE DOING WITH THIS
AND DO YOU HAVE ANY IDEAS ABOUT
HOW TO GO ABOUT THE -- AS I
MENTIONED FOR THE SECOND STEP
WE'LL TRY TO NOT REINVENT THE
WHEEL WE'RE GOING TO GO TO
SOURCES THAT HAVE ALREADY DONE
THINGS THAT ARE COMPATIBLE AND
TRIED AS MUCH AS POSSIBLE TO
INTEGRATE, RIGHT, THESE COMMON
DATA ELEMENTS FROM OTHER SOURCES
BUT AS FAR AS WE KNOW, THIS HAS
NEVER BEEN DONE IN TERMS OF
INTEGRATING ALL OF THOSE VARIOUS
AND WE'VE LOOKED HARD.
THE SOCIAL ENVIRONMENT ALBO
XAVIER AND BIOLOGICAL ALL IN
ONE.
I DON'T BELIEVE THAT'S BEEN
DONE.
SO, THAT'S WHY WE THINK THIS IS
GOING TO BE VERY IMPACTFUL.
SO I'M GOING TO STOP HERE AND I
WOULD LOVE TO HEAR YOUR
COMMENTS.
>> Dr. KEIGLER.
>> I SAID THIS BEFORE BUT, THIS
IS JUST FABULOUS AND SYSTEMATIC
WE ARE COMING UP WITH IS
CONGRUENT WITH THE ORGANIC
EVOLUTION OF THIS IN MULTIPLE
SYSTEMS AND SETTINGS OVER THE
LAST 10 OR 15 YEARS AND SO YOU
KNOW, IF THAT'S, I DON'T KNOW
WHAT THEY CALL THAT FACE
VALIDITY OR SOMETHING, I THINK
THAT'S A GREAT START AND I'LL
JUST COMMENT BRIEFLY.
ONE THING I WANT PEOPLE TO KNOW
IS THAT SOME OF YOU GUYS MAY
HAVE BEEN INVOLVED WITH
SOMETHING THAT V.A. HEALTH
SERVICE RESEARCH DOES ONCE OR
TWICE A YEAR.
A STATE OF THE ART CONFERENCE OR
A SODA CONFERENCE AND OUR
ACRONYM ANALOGY, IT'S CALLED THE
SODA.
WE'RE IN THE PROCESS OF PLANNING
ONE AND THESE ARE TWO-DAY
CONFERENCES AND 60 OR 70 PEOPLE
COME AND THEY TACKLE A
PARTICULAR PROBLEM OR QUESTION
THAT IS OF IMPORTANCE TO V.A.
BOTH FROM CLINICAL PRADO MAIN
AND POPULATION HEALTH AND
RESEARCH AGENDA DOMAINS SO IT'S
CALLED MEASURING WHAT MATTERS
COLON, WHOLE PERSON OUTCOMES AND
CLINICAL POPULATION HEALTH AND
WE HAVE ERIN FROM NCCIH WITH US
WE ANTICIPATE MORE FOLKS FROM
NIH WILL BE INVOLVED AS WE GO
ALONG AND SO I WANTED TO ADD
THAT TO THE LATTER OF WORK WE
ARE DOING TOGETHER TO BUILD THIS
WAY OF LOOKING AT THINGS AND WAY
OF MEASURING THINGS AND THINKING
ABOUT THINGS IN THIS WHOLE
PERSON CON SEX SO THAT IS SO
PEOPLE HAVE THE BACKGROUND WHY
V.A. IS STREAMING FORWARD AND
V.A. MOVED TOWARDS A KIND OF
WHOLE PERSON APPROACH TO CARE
AND MORE OF AN EMPHASIS AND SO
THERE'S NOW A REAL CONVERSATION
ACROSS THE V.A. ABOUT HOW DO WE
KNOW IF WE'RE DOING THAT AND HOW
DO WE KNOW IF WE'RE SUCCEEDING
AND PROMOTING WELLBEING SO
THAT'S A PART OF THE MOMENTUM
FOR THIS WITHIN V.A. IS THE FACT
THAT V.A. AS A HEALTH SYSTEM HAS
RECOGNIZED THE NEED THAT AT
LEAST FOR THE VETERAN
POPULATION, STOPPING AT DISEASE
MANAGEMENT AND STOPPING AT THE
MORE REDUCTIONISTIC DISEASE
ORIENTED APPROACH TO CARE JUST,
YOU KNOW, IT DOESN'T, WE HAVE TO
KEEP GOING AND SO AS SUCH WE
NEED A WAY TO LOOK AT IT AND A
WAY TO OPEN UP THE V.A. RESEARCH
AGENDA TO THIS SO I'M REALLY
EXCITED ABOUT MORE CONVERSATIONS
WITH THIS OVER THE NEXT YEAR TOO
AND ALSO I THINK THE TIMING WILL
BE GREAT FOR YOU GUYS TO SHARE
WHAT WORK YOU ARE DOING AT THE
SODA AND I LOVE PUTTING IT IN
THE CENTER.
BECAUSE THE MEASURE IN THE
ARTICLE THAT CAME OUT IN HEALTH
A CARES, IT'S CALLED FOREFRONT
NOW, IT USED TO BE CALLED HEALTH
AFFAIRS BLOG BUT PEOPLE DON'T
USE THE WORD BLOG ANYMORE.
IT DESCRIBES OUR RATIONALE
DESCRIBING THE WELLBEING SIGN
WHICH IT'S DEVELOPED BY DON VOTE
A WONDERFUL HEALTH SERVICES AND
PTSD RESEARCHER IN THE V.A.
AND WHAT THE WELLBEING SIGN
OFFERS IS A TOOL THAT'S BRIEF
ENOUGH -- WHAT WE NEED IS
SOMETHING THAT WE CAN BEGIN TO
INTRODUCE INTO THE CLINICAL
SETTING SO IT HAS TO BE SUPER
SHORT AND SO WE HAD TO FOCUS IN
ON WHICH OF THESE 20 MILLION
DOMAINS OF WHAT GOES INTO WHOLE
PERSON HEALTH AND WELLBEING
MAKES -- WHERE DO WE NEED THAT
IMMEDIATE FOCUS TO BE AND SO FOR
US, WHAT IT DOES, IT SAYS WHAT
MATTERS TO YOU MOST IN YOUR LIFE
RIGHT NOW?
WHAT ARE THE ROLES MOST
IMPORTANT TO YOU IN YOUR LIFE
RIGHT NOW?
IT COULD BE YOUR HEALTH, YOUR
WORK, YOUR FAMILY, YOUR
FINANCES, YOUR LEISURE TIME.
TELL US OVER THE LAST THREE
MONTHS HOW YOU ARE DOING,
FUNCTIONINGS, ENGAGEMENT,
SATISFACTION, IN THOSE ROLES SO
IT TELLS THE PERSON TO PICK WHAT
IS IMPORTANT TO THEM AND THEN
SUBJECTIVELY REPORT HOW THEY'RE
DOING AND SO, TO ME, PUTTING
SOMETHING LIKE THAT IN THE
MIDDLE, WHAT MATTERS TO THE
PERSON?
IF YOU LOOKED AT A COUPLE OF
THOSE OTHER CIRCLES, TOTAL FORCE
FITNESS HAS SOMETHING LIKE THAT
IN DISTRICT AND SOME OF THE REST
OF US WILL SAY ISN'T THAT
PURPOSE AND MEANING.
BUT IT'S A LITTLE DIFFERENT
BECAUSE IT'S HOW DOES PURPOSE
AND MEANING MANIFEST IN WHAT YOU
ARE DOING IN YOUR LIFE.
IT TAKES PURPOSE AND MEANING AND
GIVES IT A CONCRETE SHAPE IN
YOUR LIFE.
SO, ANYWAY, COULD I GO ON AND ON
ABOUT IT.
I WOULD LOVE IF PEOPLE READ THE
ARTICLE AND I THINK IT'S SINCE
IT'S A BLOG YOU CAN -- I HAVEN'T
CHECKED FOR COMMENTS.
WE'RE PILOTING THIS VERY BRIEF
TOOL IN CLINICAL PRACTICE IN 15
SITES NOWMENT WE'RE PILOTING IN
SOME OF THE V.A. POPULATION
HEALTH STRATEGIES LIKE THERE'S A
50,000-PERSON VETERAN SURVEY OF
ENROLL'S THAT GOES OUT EVERY
YEAR SO WE'RE TRYING TO SEE WHAT
IT CAN DO FOR US BASICALLY AND
RECOGNIZING THAT NO ONE BRIEF
TOOL WILL DO THE WHOLE TICKET.
I'LL STOP THERE, I'M SURE A LOT
OF OTHER PEOPLE HAVE THOUGHTS.
>> THANK YOU, BEN.
ALL OF YOUR INPUT IS SO
IMPORTANT AND IT'S SO HAPPY THAT
WE'RE WORKING TOGETHER.
THERE WOULD BE NO POINT IN DOING
THIS IF IT WAS NOT MESHING WITH
OTHER EFFORTS AND ESPECIALLY,
YOU KNOW, YEAH, WHAT IS GOING ON
AND THAT IS YOUR EFFORT AND
WHOLE HEALTH AND THE V.A. AND
PROCEEDED A LOT OF OUR SERVING
WITH SO LORI WHICH I'M VERY
EXCITED THAT YOU ARE THINKING
ABOUT THIS FROM A POINT OF VIEW
OF WHOLE HEALTH INSTITUTE.
>> WELL, FIRST OF ALL IT'S HARD
TO FOLLOW BEN SO I'M JUST GOING
TO SAY THAT.
I AM THRILLED TO SEE THIS.
IT FEELS LIKE YEARS OF WORK
THROUGH THE ALTERNATIVE MEDICINE
WORLD AND WE'VE ALWAYS TALKED
ABOUT WHOLE PERSON HEALTH IN A
DIFFERENT WAY AND NOW TO SEE
THAT WE'RE REALLY LOOKING AT HOW
TO MEASURE THIS.
AND I THINK WE HAVE A LOCAL
COMMUNITY CLINICAL ADVISORY
GROUP AND EVERY TIME WE MEET
THEY TALK ABOUT THESE ARE
PHYSICIANS AND OTHER
PRACTITIONERS WHO TALK ABOUT ALL
OF THESE ASPECTS ARE THINGS THAT
THEY'RE ACTUALLY BEING ASKED TO
BE ACCOUNTABLE FOR IN PAYMENT
BECAUSE OF HOW THEY AFFECT
DISEASE AND ILLNESS AND YET THEY
HAVE NO CONTROL OVER THIS AND
THEY HAVE NO REAL WAY TO MEASURE
IT EFFECTIVELY SO WHEN WE TALK
ABOUT VALUE-BASED CARE AND WHOLE
PERSON HEALTH, WHAT IS HAPPENING
HERE IS ABSOLUTELY IMPERATIVE TO
MOVE THIS WORK FORWARD.
ONE OF THE QUESTIONS I HAD AND
WE TALKED ABOUT THIS I THINK
EARLY ON IN THE DOMAIN THAT IS
LISTED AS FAMILY, SOCIAL AND
COMMUNITY CONTEXT, I WONDER IF
IMPLICIT IN THAT IS HEALTH
BELIEFS, VALUES AND ATTITUDES
BECAUSE I THINK THAT THAT IS
FUNDAMENTAL TO HOW PEOPLE CHOSE
THEIR HEALTH AND HOW THEY RELATE
IN THEIR COMMUNITY AROUND THEIR
HEALTH AND NOT JUST HEALTH
ACCESS BUT OBVIOUSLY THEIR
HEALTH BEHAVIOR SO THAT WAS JUST
ONE QUESTION.
I'M JUST SO THRILLED AND I'M SO
THRILLED TO BE AT THIS TIME IN
PARTNERSHIP WITH YOU ALL AROUND
THIS.
>> THANK YOU, ALREADI'.
WE CERTAINLY ARE VERY MUCH
WELCOME FEEDBACK ABOUT TWEAKING
SOME OF THESE CATEGORIES.
WE STRUGGLED WITH THAT ONE AND
WHERE TO PUT IT.
YEAH, WE CAN REITERATE AND MAKE
SURE THAT WE GET IT JUST RIGHT.
SO, I HAVE RICK, HELEN AND NADJA
AND I HOPE THAT WAS THE RIGHT
ORDER.
>> O I DON'T KNOW IF I DON'T KNOW IF I SH OULD
FOLLOW BEN AND LORI.
THIS IS VERY EYE-OPENING FOR ME
AND I LOVE IT.
ONE OF THE THINGS I FOUND MYSELF
QUESTIONING WAS YOU KNOW, WHERE
WAS PAIN?
MANY OF THE TIMES WE THINK ABOUT
PAIN IS THE MAJOR REASON WHY
PEOPLE SEEK HEALTHCARE AND
THAT'S BECAUSE THEY WANTED
ABSENCE OF DISEASE, OBVIOUSLY,
BUT I CAN SEE WHERE THE PRESENCE
OF PAIN WOULD BE A LINCHPIN THAT
ARE THE FACTORS IN THAT CIRCLE.
YOUR RELATIONSHIP WITH YOUR
FAMILY, YOUR SUBSTANCE ABUSE,
YOUR SLEEP, I WOULD SEE THAT
SYMPTOM AS DROPPING UP AS A
MAJOR CONTRIBUTE OR TO IT AND I
KNOW NCCIH HAS HISTORICALLY
ALIGNED ITSELF WITH THAT SYMPTOM
FOR A LOT OF ITS FUNDING SO JUST
CURIOUS AS TO WHAT THE THINKING
IS BEHIND THAT.
WHY WAS IT DISCUSSED OR NOT?
>> IT'S SUCH A GOOD QUESTION AND
YES, I MEAN, I'M LOOKING WHERE
PAIN WAS ALMOST NOT ON THE LIST
FROM THE RFI.
HE HAD PAIWE HAD PAIN AS A SEPARATE
BUBBLE.
PAIN AND ALSO IMPORTANTLY PAIN
MANAGEMENT, RIGHT.
HOW DO YOU MANAGE THE PAIN.
SO WE HAD STRESS AND STRESS
MANAGEMENT IN ONE BUBBLE AND WE
HAD PAIN AND PAIN MANAGEMENT AS
ANOTHER BUBBLE.
FOR SOME REASON, THEY GOT SORT
OF, MAYBE WE SHOULD EITHER
DECOUPLE THEM OR ADD MAYBE PAIN
TO THE STRESS AND PAIN.
I DON'T KNOW.
IT'S TRICKY, RIGHT.
WE DON'T WANT TO KEEP
MULTIPLYING BECAUSE IF YOU SAY
PAIN, BUT WE HAVE SLEEP.
AND SO IT SEEMS LIKE PAIN, WE
HAVE SOME THUMBS UP HERE.
SO, SHOULD IT BE A SEPARATE
BUBBLE OR SHOULD IT BE COUPLED
WITH STRESS?
>> I DON'T KNOW IF IT SHOULD BE
IN THERE.
IF YOU ARE THINKING OF IT AS
LIKE A DISEASE OR APPROACH AND
THAT IS FAILED US TO SOME DEGREE
AND WE WANT TO GET TO THE WHOLE
BODY, WHOLE-PERSON APPROACH AND
IT'S A NEW ANGLE THEN MAYBE WE
DON'T NEED TO BE SO FOCUSED ON
PAIN BUT I THINK A LOT OF PEOPLE
PROBABLY ARE BECAUSE I THINK IT
IS A BARRIER FOR WHOLE PERSON
HEALTH.
>> IT'S A SLIPPERY SLOPE.
IF YOU HAVE PAIN AND WHAT ELSE
YOU PUT IN THERE BUT IT SEEMS
IMPORTANT ENOUGH, RIGHT, WE HAD
IT IN THERE FOR A LONG TIME AND
SO I'M GLAD YOU BROUGHT IT UP.
ANY OTHER PEOPLE FEEL ABOUT THIS
ABOUT PAIN?
>> WELL YOU COULD SAY, THERE ARE
A LOT OF OUTSIDE FACTORS,
CONDITIONS THAT THE INDIVIDUAL
WOULD HAVE THAT IMPINGE ON
MULTIPLE DOMAINS.
SO IT'S NOT -- IT'S NOT LIKE --
LIKE THIS MODEL CAN'T CAPTURE
EVERY SINGLE THING.
I'M STRUGGLING WITH HOW TO PUT
IT.
THERE ARE NO -- I WAS EVEN
QUESTIONING YOU GUYS HAVING
SUBSTANCE ABUSE IN THERE.
>> OURS EXCLUDES SPECIFIC
DISEASE.
IT'S THE ONLY DISEASE IN THERE.
>> Dr. Helene Langevin: BUT THE
MAIN THING THERE IS THAT SMOKING
AND ALCOHOL, RIGHT.
IF YOU LOOK AT ALL THE PLACES
WHERE DISEASE PREVENTION, THE
FACTORS MISSING ON EVERY SINGLE
WEBSITE IS NUTRITION, PHYSICAL
ACTIVITY, SMOKING AND ALCOHOL.
I MEAN, THAT'S SO CENTRAL,
RIGHT, FOR WHAT PREDICTS.
>> I CAN'T REMEMBER IF IT WAS
ANOTHER CATEGORY CALLED
LIFESTYLE CHOICE OR BEHAVIOR
BECAUSE IT CAN RAISE A DIFFERENT
MESSAGE AND RICK IS RAISING AND
WHEN YOU START, CONSTITUTING THE
EQUATION ABOUT THE WHOLE PERSON
THAT IMPINGE ON THAT WHOLE
PERSON WELLBEING AND IT BECOMES
ANEN LESS AND THERE'S SOME THEY
ENTER INTO THE ENGAGEMENT WITH
THE MODEL.
IT'S A GREAT POINT AND WE MADE
AN INTENTIONAL CHOICE NOT TO GO
WITH THE DISEASES AS PART OF THE
MODEL BUT I DON'T IF IT'S RIGHT
FOR YOU GUYS EITHER.
>> I HAVE HELEN AND LYNN.
>> ON THE POINT, WHAT INCLUDES
SUBSTANCE USE RATHER THAN ABUSE
BECAUSE YOU ARE FOR GETTING,
THIS SMOKING AND ALCOHOL IS ALL
IN THE TASK BUT STILL FACTORS
BUT WE HAVE PSYCHEDELICS,
CANNABIS, CBD ON THE STREET AND
EVERYONE IS USING THEM AND WE
KNOW THEY'RE LEGAL WHAT THEY DO
FOR A WHOLE PERSON HEALTH, YOU
KNOW.
AND IT'S USING DIS CRIMINAL
ANTLY EVEN IN THE STORES.
YOU BUY CBD IN SIMILAR BOTTLES
FOR SLEEP AND ANXIETY AND PAIN
SO IT NEEDS TO BE INCLUDED.
ALSO, THE LIFESTYLE SORT OF
FACTOR THAT IS A FACTOR FOR
MULTIPLE DISEASES IS LONELINESS
AND SOCIAL SUPPORT AND BECAUSE
I'M ON THE AREA OF AGING, ALL OF
THE CHRONIC CONDITIONS LEAD TO
PREMATURE ACCELERATED AGING AND
IT PROVIDES US WITH VERY
RELIABLE RELATIVE RELIABLE
BIOMARKERS OF HOW THINGS ARE
MOVING ALONG AND OUR
INTERVENTIONS.
AND THEY ARE GETTING EASIER AND
EASIER TO MEASURE LIKE DNA AND
SO FOURTH AND ALZHEIMER'S
PREDICTORS GETTING VERY USER
FRIENDLY IN TERMS OF PRETRIAL
BIOMARKERS SO I COULD ADVOCATE
FOR THAT.
>> THAT WOULD BE WITHIN THE
SOCIAL CONTEXT, RIGHT?
>> AGING, NO, IT'S A BIOLOGICAL
PROCESS AND SO --
>> I THOUGHT YOU TALKED ABOUT
LONELINESS.
>> WELL, IF YOU D DON'T WANT TO
MEASURE DISEASE ASK ABOUT
LONELINESS.
>> IT COULD BE ONE OF THE
QUESTIONS.
>> ONE OF THE QUESTIONS.
>> IT WOULD BE FOLDED UNDER.
>> SOCIAL SUPPORT, I DON'T KNOW.
>> YEAH, YEAH.
>> THANK YOU.
NADIA.
>> YEAH, SO, THANK YOU FOR
REALLY INTERESTING PRESENTATION.
IT'S NICE TO SEE THE COMING FULL
CIRCLE FROM THE CALL FOR PEOPLE
TO SUBMIT THEIR IDEAS ABOUT WHAT
FACTORS WE COULD LOOK AT TO SEE
WHAT THE DATA LOOK LIKE ON THAT
AND SEE THE OVERLAP WITH OTHER
GROUPS THAT ARE THINKING ABOUT
SIMILAR THINGS, VERY NICELY
PRESENTED AND REALLY
INTERESTING.
I WONDERED, IT SEEMS LIKE YOU
ARE SORT OF ON A PROGRESSION
FROM CHOOSING WHAT ARE THE
INDICATORS OF WHOLE-PERSON
HEALTH TO FINDING WAYS TO
MEASURE THOSE INDICATORS AND
PART OF THAT MEASUREMENT
PRESUMABLY WILL BE BEHAVIORAL
BUT I WONDER IF THERE'S ALSO AN
INTEREST IN MOLECULAR MEASURES
AS WELL AND I GUESS THE ACTUALLY
THE COMMENT WE JUST HEARD A
MOMENT AGO MENTIONED DMA METH
METHYLATION AND I WONDER THE
PROGRESSION OF DEVELOPING THIS
SORT OF WHOLE-PERSON HEALTH
INITIATIVE IS THINKING ABOUT
WHAT THE BEST MOLECULAR MEASURES
ARE AND TRYING TO BRIDGE THE BIO
MEMBER CAL WITBIOCHEMICAL.
>> THE LIST OF MEASUREMENTS ON
THE RIGHT-HAND SIDE THE TABLE,
THEY DID ENCLOUD -- WELL, THE
SIMPLE ONES, RIGHT.
THE LIPIDS AND THE HEMOGLOBIN
AND YOU CAN HAVE MICROBIOME AND
YOU CAN ADD TO THAT FOR SURE.
THE ONES THAT WERE INCLUDED HERE
WERE THE ONES THAT ARE EASILY
ATTAINABLE AND WE BASED
OURSELVES ON THAT LIST OF THE
AGING.
IT WAS IN THERE IN FACT IT WAS
ONE OF THE MAIN MEASUREMENTS
THAT WERE HIGHLY CORRELATED WITH
THE PAYS O PACE OF AGING.
WE SHOULD BUILD THAT AND AS THE
SCIENCE DEVELOPS AND THEN MORE
MEASUREMENTS COULD BE ADDED FOR
SURE.
>> LOVE, LOVE, LOVE WHOLE PERSON
HEALTH AND I'M SO EXCITED.
BEING A POSTDOC IS JUST SUPER
EXCITING AND MY COMMENT IS BACK
TO PAIN AND I'M TALKING FROM OUR
CLINICAL AND LENS RIGHT NOW AND
WE'RE RECORDING IT AS
CLINICIANS.
MAYBE A -- IT IMPACTS A LOT OF
THINGS.
IT DEFINITELY IMPACTS WELLBEING
AND MAYBE A BETTER PAIN SCALE
BUT MAYBE LOOKING AT WHAT IS
ALREADY EXISTING ON THAT CRAPPY
1-10 SCALE AND SEEING HOW THAT
CORRELATES WITH THE WELLBEING
SCALE OR WELLBEING SCALES THAT
ARE BEING KIND OF PILOTED RIGHT
NOW AND THAT'S MY TWO CENTS
RIGHT NOW.
>> VERY SOPHISTICATED PAIN
MEASURES AND I THINK IF WE'RE
GOING TO PUT PAIN IN THERE,
WE'LL HAVE GOOD WAYS TO ASSESS
IT.
THE IMPACT, FOR EXAMPLE, OF PAIN
ON PEOPLE'S LIVES, THAT'S REALLY
IMPORTANT, RIGHT.
>> I WAS THINKING ALSO, BECAUSE
THIS IS, YOU KNOW, ULTIMATELY
YOU WANT TO TRANSLATE THIS INTO
CLINICAL PRACTICE AND SO YOU
KNOW, WHATEVER SCALE GETS INTO
CLINICAL PRACTICE SO RIGHT NOW,
RIGHT, THE PAIN SCALE IS 1-10
SCALE THAT WE ALL USE AND IT'S
RECORDED AS PART OF THE INVITE
ALS SO THINKING ABOUT THE
TRANSLATION OF THESE SCALES AND
YOU KNOW, A LOT OF CLINICIANS
JUST HAVE A VERY SHORT PERIOD OF
TIME.
>> WE'RE DOING RESEARCH, THIS IS
RIGHT NOW FOR RESEARCH.
>> YES, I UNDERSTAND.
>> EVENTUALLY, YOU COULD ADOPT
IT BUT RIGHT NOW WE'RE DOING
RESEARCH.
THIS IS GEARED TOWARDS -- IT.
>> NO, I UNDERSTAND.
I'M JUST SORT OF THINKING AHEAD
INTO TRANSLATION AND ALSO
THINKING ABOUT JUST PAIN SCALES
IN GENERAL AND PAIN ALSO REALLY
IMPACTING WHAT HAPPENS WITH
PEOPLE'S WELLBEING.
>> THAT'S RIGHT.
>> SO, YEAH.
SO WE DEFINITELY WOULD WANT TO
USE PAIN MEASURES THAT ARE DOING
WITH THE NOT JUST HOW MUCH PAIN
PEOPLE ARE HAVING IN THE MOMENT
BUT HOW IS PAIN EFFECTING THEIR
FUNCTIONING AND THEIR LIFE.
I THINK IT'S REALLY IT.
DOES THAT MAKE SENSE?
>> YES.
IT MAKES SENSE.
>> YEAH, YEAH.
>> JUSTIN.
>> WELL, WONDERFUL PRESENTATION
AND I MEAN, THE COMPLEXITY AND
NUMBER OF DIMENSIONS THAT YOU
ALL ARE THINKING OF NEEDS TO BE
COM PENDED.
WHOLE PERSON HEALTH IS COMPLEX
AND TO THINK ACROSS FROM
BEHAVIORS TO OUTCOMES TO
MOLECULAR MARKERS, THAT MAYBE
MECHANISTIC IT'S A HUGE SOUP TO
TRY TO DECON INVOLVE AND CREATE
SOMETHING ORDERED AND YOU KNOW,
I THINK BACK TO THE ORGY MALES
THAT WERE REQUESTED PUTTING AND
THE WORDINGS WAS SOMETHING LIKE
COMMON DATA AND THEY MAY BE
BETTER CLOCKS THAN WHAT YOU WERE
MENTIONING EARLIER AND CERTAINLY
IMMUNE HEALTH IS THIS WAY.
THERE'S RAPIDLY EVOLVING FIELD
AND WE'RE NOT AT AN APP TA
HIGHED SPOT BUT WE'LL MOVE THERE
SO I'M CURIOUS WHETHER YOU THINK
ABOUT USING DESCRIPTIONS THAT
ARE SO VAGUE THAT WOULD ENABLE
SOME SORT OF FLEXIBILITY IN WHAT
INVESTIGATORS ARE DOING OR
WHETHER THERE WILL BE A SPECIFIC
LIST OF MARKERS AND THINGS LIKE
THAT AND THEN THAT WILL CHANGE
OVER TIME WITH CERTAIN
THRESHOLDS OF DATA BEING
REACHED.
I'M CURIOUS ON THE CUTTING EDGE.
>> FOLLOWING THE CONVERSATION
AND A LOT OF THE OTHER CDE, YOU
KNOW, EFFORTS BEING DEVELOPED
AND OTHER PARTS OF THE NIH, AND
THE MAIN THINGS, MAKE SURE YOU
ARE NOT MISSING SOMETHING MAJOR
ESPECIALLY IF WE WANT TO CAPTURE
WHOLE PERSON, YO YOU WOULDN'T WANT
TO LEAVE OUT ATTRITION.
IF YOU HAD A SUPPOSED COMMON
DATASET, THAT SUPPOSEDLY LOOKS
AT THE WHO WILL PERSON BUT
NUTRITION WAS MISSING, THAT
WOULD BE WRONG.
NOW, THERE ARE OTHER THINGS
WHERE IT WOULD BE LESS, YOU
KNOW, BLATANT, RIGHT, WHERE
THERE WOULD BE MORE DEBATE.
WE'RE LOOKING FOR THE MINIMUM
COMMON DATASET THAT EVERYBODY
WOULD AGREE ON AND EVERYTHING
THAT IS IN THERE IS ABSOLUTELY
SHOULD BE THERE AND THEN YOU CAN
HAVE THINGS ON THE EDGES OF IT,
RIGHT.
THEY ARE ALSO THE ACCESSIBILITY
OF THE TYPE OF DATA.
NOT EVERY STUDY WILL HAVE ACCESS
TO THE WHOLE DATA.
NOT EVERYBODY IS SCHEDULED TO
HAVE ACCESS TO HAIR SAMPLES WITH
TOXIC LEVELS OF THIS OR THAT SO
IT'S -- IT COULD HAVE LAYERS AS
NEW SCIENCE COMES IN WE DEVELOP
A NEW THING, YOU KNOW, THAT
EXPLAINS THE COURSE OF YOUR OVER
ALL IT WOULD BE ANNIE INVOLVING
THING BUT YET IT WOULD PRESERVE
A STABLE CORE SO THAT YOU CAN
THEN TRANSLATE ACROSS A LOT OF
STUDIES WITH THE WHOLE
INTEROPERABILITY SO IT'S
IMPORTANT IN THIS FIELD AND SO
YEAH, THAT'S HOW WE'RE THINKING
ABOUT IT.
>> EXCELLENT, THANK YOU.
>> I REALLY WANT TO THANK THIS
GROUP.
YOU HAVE BEEN SO GREAT IN
HELPING SHEPHERD THIS WHOLE
CONCEPT OF WHOLE-PERSON HEALTH
FROM THE BEGINNING.
I MEAN, NOT ALL OF WERE YOU
THERE AT THE VERY BEGINNING BUT
AMOUNT OF YOU WERE, RIGHT.
AND SO HOW WE STARTED WITH AN
IDEA THAT WAS A LITTLE BIT OUT
THERE AND SUPPORTED BY -- A
LITTLE BIT OUT THERE FOR NIH.
BUT WAS SUPPORTED BY A LOT OF
THINGS THAT WERE GOING ON THAT
INCLUDED IN A LOT OF PLACES THAT
AND THEN NOW IT LOOKS LIKE WE
CAN VERY MUCH LOOK FORWARD TO IT
SO REMEMBER THAT CIRCLE WE
STARTED WITH A STAKEHOLDERS AND
WE WENT TO THE METHODS AND NOW
WE'RE TALKING ABOUT THE DATA AND
THEN THE NEXT STEP IS GOING TO
BE.
THE NEXT STEP AFTER THIS IS
THIS.
THEN WHAT WE WANT TO DO AND THIS
IS ANOTHER IMPORTANT TASK,
DEVELOP WAYS TO ANALYZE OUR
PORTFOLIO AND BASED ON THIS
FRAMEWORK AND THAT IS GOING TO
BE CHALLENGING BECAUSE WE TALKED
ABOUT TERMS THAT ARE SEARCHABLE
AND THIS IS WITH OR OFFICE OF
POLICY PLANNING AND EVALUATION
HAS BEEN HELPFUL IN WORKING WITH
US AND KEEPING REMINDING US THAT
WE HAVE TO MAKE SURE THAT WE'RE
USING TERMS THAT ARE GOING TO BE
ABLE TO FORECAST OUT.
ARE WE FUNDING THIS RESEARCH AND
SO THIS IS NOT EASY.
SO, WE'RE GOING TO DEVELOP WAYS
TO DO A PORTFOLIO ANALYSIS THAT
WILL REFLECT HOW INTEGRATED OF
THE RESEARCH IS AND YOU HAVE
ALREADY STARTED DABBLING INTO
THIS BUT WE HAVE A LOT OF WORK
TO DO IN THIS AREA.
AND FINALLY, DEVELOP, WHICH WE
STARTED DOING, DEVELOP TARGETED
FUNDING OPPORTUNITIES THAT ARE
GOING TO UTILIZE THIS FRAMEWORK,
YOU KNOW, AS A BASIS.
DO YOU HAVE ANY THOUGHTS ON THIS
AREA?
WE'VE DONE ALREADY SO MUCH IN
OUR NEXT MOVE.
>> NO, I WOULD JUST SAY IT'S
WONDERFUL TO SEE IT ALL COMING
TOGETHER AND HOW YOU KNOW, WE
ARE ALREADY REALIZING THAT A LOT
OF THE RESEARCH THAT IS OUT
THERE, NOT ONLY NCCIH BUT THE
OTHERS AS WELL HAVE ELEMENTS OF
THIS FRAMEWORK THAT THEY PERHAPS
ARE NOT EVEN APPRECIATING AND
IT'S GOING TO BE GREAT TO SEE
THIS PORTFOLIO ANALYSIS.
>> Dr. Helene Langevin: EXACTLY.
TO SEE WHAT ALL THE OTHER
INSTITUTES AND CENTERS ARE
DOING.
THERE'S A LOT OUT THERE.
WE KNOW THIS FOR SURE.
WE HEARD A LOT ABOUT IT AT OUR
WORKSHOP.
>> FANTASTIC JOB.
FOR A NUMBER OF YEARS, A LOT OF
US SAY WHAT ABOUT SLOPE.
SLEEP.
SLEEP IS SO WELL REPRESENTED.
FANTASTIC DAY, THANK YOU SO
MUCH.
>> Dr. Helene Langevin: YOU ARE
VERY WELCOME.
WE WERE SURPRISED HOW MANY TIME
SLEEPS WAS NOT PART OF THE
PICTURE IN A LOT OF THE THINGS
WE SAW AND SLEEP AND STRESS.
I THINK THIS IS WHERE MY HUNCH
STRESS, STRESS MANAGEMENT AND
SLEEP ARE GOING TO BE THE
MISSING INGREDIENTS THAT WILL BE
THE KEY TO UNLOCKING SO MANY OF
THE BEHAVIOR CHANGES THAT WE ARE
SEEKING AND NOT ACHIEVING A LOT
AT TIMES IN A LOT OF STUDIES FOR
EXAMPLE WHERE THEY ADAPT, FOR
EXAMPLE NUTRITIONAL
INTERVENTION, IF YOU DON'T
MANAGE STRESS AT THE SAME TIME,
HOW ARE PEOPLE GOING TO DO THEIR -- IF THE Y CAN'T SLEEP,
HOW ARE THEY GOING TO BE ABLE TO
HAVE THE ENERGY TO COOK A
HEALTHY MEAL?
HOW ARE THEY GOING TO HAVE THE
ENERGY TO GO FOR A WALK?
IF THEY'RE EXHAUSTED BECAUSE
THEY'RE SO STRESSED OUT AND THEY
CAN'T SLEEP.
THIS IS A KEY THING AND I
TOTALLY AGREE WITH YOU.
>> ON THIS, JUST A COMMENT.
I WAS JUST A PART OF THE
AMERICAN HEART ASSOCIATION NEW
GUIDELINES DEVELOPMENT FOR HEART
HEALTH AND FOR THE FIRST TIME
THEY INCLUDED SLEEP AND THAT HAS
TO DO WITH THE CLEAR
PRESCRIPTION OF SEVEN TO NINE
HOURS THAT WAS INCLUDED NED A
HARD TIME WITH EXPRESS SIMPLY
BECAUSE THERE'S NOT A NUMBER OF
HOW MUCH STRESS ONE CAN OR
SHOULD ENDURE AND THEY INCLUDED
MINDFULNESS TO MY DELIGHT AS A
RECOMMENDATION FOR AN OFF SIT SO
POSITIVE EMOTIONS.
SO IT WILL BE INCLUDED.
THE MENU GRAPHICS HAVE
RECOMMENDED TECHNIQUES AND NOW
IT'S CALLED ESSENTIAL EIGHT.
BEFORE IT WAS SEVEN.
IF NCCIH COULD CONNECT WITH THIS
THEME AND MAYBE STIMULATE
RESEARCH.
WHAT IS NEEDED IS HOW MUCH.
THEY NEED DOSING.
>> Dr. Helene Langevin: THIS IS
THE AMERICAN HEART ASSOCIATION?
>> YEAH.
>> Dr. Helene Langevin: FANTASTI
C.
WE WILL DEFINITELY LOOK AT THAT.
THAT'S GREAT.
THANK YOU.
THIS IS EXACTLY THE KIND OF
THING THAW WANT TO MAKE SURE
THAT WE PLUG INTO ALL OF THESE
VERY, VERY -- VERY IMPORTANT AND
VERY SYNERGISTIC EFFORTS.
HOW ARE WE DOING FOR TIME HERE?
>> WE STILL HAVE TIME.
RICK --
>> SO, I'M THINKING MORE ABOUT
THIS AND I THINK THAT IF ANALOGY
OF IT LIKE BEING WHOLE PERSON
HEALTH IS WHAT GETS THE CAR
GOING AND KEEPS IT ON THE ROAD
AND YOU'VE GOT A DRIVER, GAS,
TIRES AND A CAR AND THESE ARE
ALL THE THINGS THAT YOU NEED FOR
YOUR BODY TO GO FROM POINT A TO
POINT B.
WE ALL KNOW THAT THERE ARE ALL
SORTS OF DISORDERS OR DISASTERS
THAT CAN PREVENT YOU FROM GOING
FROM POINT A TO POINT B ONTO THE
WAY TO WHOLE HEALTH AND THOSE
ARE THE DISEASES THAT CAN COME
IN AND THAT CAN INCREMENTALLY
TAKE OUT DIFFERENT PIECES OF
WHAT IS SUPPORTING YOUR WHOLE
HEALTH.
I'M JUST THINKING, I GUESS YOU
ARE THINKING THIS AS WELL, THAT
THIS WOULD BE INTEGRATED IN THE
OTHER INSTITUTES AS, FOR
EXAMPLE, THEY WOULD BE THINKING
OF RUM LOGICAL CONDITIONS THAT
CAN IMPACT THINGS LIKE EXERCISE,
ALL THE OTHER ASPECTS THAT CAN
GO INTO WHOLE HEALTH.
SO, I THINK IT CAN BE INTEGRATED
WELL.
>> Dr. Helene Langevin: YEAH,
YEAH.
AND AS YOU SAID, A LOT OF THESE
DISEASES HAVE A PATH, RIGHT.
A LOT OF THEM START WITH A PHASE
WHERE THINGS ARE STARTING TO GET
OFF A KILTER.
A LOT OF TIMES, EVEN FOR RUM A
LOGICAL DISEASES YOU SEE RATES
STARTING TO FLUCTUATE UP AND
DOWN AND YOU MAY NOT HAVE A
CLEAR DIAGNOSIS OFF THE START
BUT YOU MAY HAVE A PHASE.
THE SAME THING WITH A LOT OF THE
OTHER CHRONIC DISEASES FOR
HYPERTENSION, DIABETES, FOR
OSTEO ARTHRITIS.
IT DOESN'T HAPPEN ALL OF A
SUDDEN YOU HAVE A DISEASE.
SO I DON'T KNOW IF YOU REMEMBER
THAT DIAGRAM OF THE PLANTS WHERE
YOU HAVE A HEALTHY PLANT AND YOU
HAVE THE REALLY SICK PLANT AND
IN THE MIDDLE YOU HAVE A PLANT
THAT LOOKS LIKE IT.
SO THE OPPORTUNITY TO INTERVENE
WITH LIFESTYLE INTERVENTIONS IS
THERE.
I MEAN, THERE'S THE PRIMARY
PREVENTION, OF COURSE, SCHOOLS,
KIDS, MAKE SURE PRIMARY
PREVENTION MAKE SURE THEY DID
GET SICK BUT EVEN WHEN PEOPLE
START TO GET A LITTLE BIT SICK,
THERE'S A REAL OPPORTUNITY HERE
TO INTERVENE BEFORE
PHARMACOLOGICAL TREATMENTS
STARTS BECAUSE WHEN THE
PHARMACOLOGICAL TREATMENTS
STARTS, THEN THE PHARMACOLOGY
TAKES OVER.
IT REALLY TAKES OVER THE
PHYSIOLOGY AT SOME POINT IT'S
NECESSARY AND THERE'S A LOT OF
TIMES A WINDOW OF OPPORTUNITY
EARLY WHEN THE BEHAVIORAL
INTERVENTIONS CAN BE VERY
IMPACTFUL AND THAT'S WHEN YOU
REALLY HAVE THE HEALTH
RESTORATION.
THERE'S FIX PATHOLOGY OF COURSE
THEN THE HEINE BETWEEN HEALTH
AND DISEASE IS A GRAY ZONE HERE
AND THAT GRAY ZONE WE CAN WORK
WITH IT.
IT'S THE ONLY THING WE KNOW HOW
TO DO.
>> YEAH.
>> THIS WAS A GREAT DISCUSSION,
REALLY WANT TO THANK ALL OF YOU
FOR YOUR GREAT QUESTIONS AND
INPUT.
WE'RE GOING TO -- THIS IS ALL
RECORDED AND WE'RE GOING TO TAKE
ALL OF YOUR SUGGESTIONS AS FAR
AS WE'RE REALLY GOING TO THINK
HARD ABOUT THESE COMPONENTS THAT
WE'RE A LITTLE BIT LESS CLEAR
LIKE PAIN AND YOU KNOW, SOME OF
THE SOCIAL AND WE'LL GET BACK TO
YOU.
OK.
SHOULD WE MOVE ONTO THE NECK
THING PERHAPS?
>> WELL, WE'RE ACTUALLY AT THE
LAST THING.
>> Dr. Helene Langevin: WE'RE
DONE.
>> NOT QUITE BUT ALMOST.
SO, THE LAST THING ON THE AGENDA
IS THE PUBLIC COMMENT PERIOD AND
AGAIN BECAUSE LIKE WE'VE BEEN
FOR THE LAST COUPLE OF YEARS,
WE'RE NOT DOING THIS MEETING
IN-PERSON AND IT'S NOT POSSIBLE
FOR THE PUBLIC TO COME IN AND
MAKE IN-PERSON COMMENTS.
SO, AS I MENTIONED AT THE
BEGINNING OF OPEN SESSION, IF
ANY MEMBER OF THE PUBLIC WISHES
TO MAKE A PUBLIC COMMENT, THEY
MAY DO SO SEND PARTICULAR IN
WRITING AND TO ME AND IT HAS TO
BE SENT WITHIN WE CAN SUBMIT IT
BY E-MAIL OR HARD COPY
SNAIL-MAIL AND IT HAS TO BE IN
WRITING AND THE CONTACT
INFORMATION FOR ME IS ON THE
NCCIH WEBSITE AND YOU CAN GET IT
FROM THERE AND YOU CAN
ININCLUDEDDING MY E-MAIL AND MY
SNAIL MALE ADDRESS.
SO THAT BASICALLY CONCLUDES AND
OUR AGENDA FOR THE SAME AND LET
ME JUST CHECK IN WITH Dr.
EDWARDS ANY FINAL COMMENTS.
>> NO, NO YOU THANK YOU VERY
MUCH.
IT WAS A WONDERFUL DISCUSSION.
>> THANK YOU,.
>> I AGREE, THANK YOU SO MUCH.
I THINK THE VALUE OF THIS
COMMITTEE IS DIVERSITY OF
OPINIONS AND IDEAS AND IT REALLY
ENRICHED DISCUSSION AND
DIALOGUE.
>> LAST WORDS.
>> I JUST WANT TO SAY THANK YOU,
THANK YOU FOR BEING WITH US SO
PRESENT AND A TEN DIFFERENT
THROUGHOUT THTIVE THROUGHOUTTHE DAY.
WE'LL SEE YOU IN JANUARY AND
WHICH TYPE OF MEETING THAT WE
HAVE, AND HAVE A GOOD WEEKEND.
>> WITH THAT, I JUST ALSO WANT
TO PUBLICLY ACKNOWLEDGE ALL OF
THE STAFF WHO HAVE BEEN WORKING
DILIGENTLY BEHIND THE SCENES AND
YOUR UNSUNG HEROES IN ACTUALLY
MAKING THE CONFERENCE HAPPEN AND
SO THANK YOU TO ALL OUR SUPPORT
STAFF AND OUR I.T. STAFF AND OUR
EXTRAMURAL SUPPORT ASSISTANCE
AND COMMUNITY MANAGEMENT STAFF
AND REALLY ENDEAVORED WORK HARD
TO MAKE THIS LOOK FLAWLESSLY AND
EASY.
>> ONCE AGAIN --
>> ONES AGAIN.
SO THANK YOU, EVERYONE.
AND WITH THAT WE'LL CONCLUDE
THIS MEETING OF COUNCIL AND LOOK
FORWARD TO YOUR ATTENDANCE IN
THE NEXT MEETING IN JANUARY.
SO HAVE A GREAT WEEKEND.