WELL, GOOD MORNING, EVERYONE.
WELCOME TO THE FIFTH ANNUAL NIH
HEAL INITIATIVE SCIENTIFIC
MEETING.
I'M TAMARA, A PROGRAM OFFICIAL
AT NIDA, AND I'M GOING TO BE
YOUR EMCEE FOR THE NEXT TWO
DAYS, ALONGSIDE DR. ERIC THANK
HUDAKIN THE DIVISION OF TRANSLAL
RESEARCH AT THE NATIONAL
INSTITUTE OF NEUROLOGICAL
DISORDERS AND STROKE.
SO WE ARE VERY EXCITED TO HAVE
ATTENDEES THAT SPAN THE FULL
HEAL COMMUNITY HERE, INCLUDING
PRE-CLINICAL BASIC RESEARCHERS,
IMPLEMENTATION SCIENTISTS, ALL
WORKING TO ADDRESS THE OPIOID
USE DISORDER AND PAIN CRISES.
AND OF COURSE WE'RE ALSO JOINED
BY NIH LEADERSHIP AND STAFF, AS
WELL AS COMMUNITY PARTNERS THAT
ARE ADVISING OUR HEAL PROJECTS
AND THE HEAL INITIATIVE AS A
WHOLE.
MANY HAVE LIVED AND LIVING
EXPERIENCE, AND WE'RE VERY
HONORED TO HAVE SO MANY CRITICAL
PERSPECTIVES AT THIS MEETING AND
AN EAGERNESS TO COME TOGETHER.
SO JUST A REMINDER, THIS IS A
HYBRID MEETING.
MOST SESSIONS WILL BE
LIVESTREAMED TO VIRTUAL
ATTENDEES SO THEY CAN ACCESS
THEM IN THE VIRTUAL EVENT
PLATFORM.
AND BOTH THE VIRTUAL AND
IN-PERSON ATTENDEES HAVE ACCESS
TO THIS PLATFORM.
YOU SHOULD HAVE RECEIVED AN
EMAIL AND ACCESS LINK TO THIS
EARLIER IN THE WEEK.
THE PLATFORM INCLUDES ADDITIONAL
RESOURCES INCLUDING ALL OF THE
RESEARCH POSTERS, AS WELL AS
THEIR ABSTRACTS, AND IF YOU ARE
PRESENTING A POSTER, PLEASE BE
SURE TO CHECK YOUR POSTER ON THE
PLATFORM SINCE VIRTUAL ATTENDEES
CAN LEAVE COMMENTS FOR YOU AND
QUESTIONS AND YOU MIGHT WANT TO
RESPOND.
ALL MEETING SESSIONS ARE BEING
RECORDED AND WILL BE AVAILABLE
ON THE PLATFORM FOLLOWING THE
MEETING.
THE PLENARY SESSIONS IN THIS
ROOM WILL ALSO BE LIVESTREAMED
TO THE PUBLIC VIA NIH VIDEOCAST.
AND RECORDINGS ARE GOING TO BE
AVAILABLE ON THE HEAL WEBSITE.
IN ADDITION TO ATTENDING THE
SESSIONS, WE ENCOURAGE YOU TO
PARTICIPATE IN THE Q & A AND THE
DISCUSSIONS DURING THE SESSIONS.
IN THIS ROOM, YOU'LL SEE SOME
MICROPHONE STANDS THAT ARE
AVAILABLE, SO PLEASE STEP UP TO
THE MICROPHONE AND THE MODERATOR
CAN CALL ON YOU FOR A QUESTION.
THERE ARE ALSO GOING TO BE
MICROPHONES IN THE BREAKOUT
ROOMS, SO PLEASE USE THEM SO YOU
CAN BE HEARD NOT ONLY IN THE
ROOM BUT AGAIN ALSO BY THOSE
VIRTUAL ATTENDEES, AND FOR
VIRTUAL ATTENDEES, WE ASK THAT
YOU USE YOUR CHAT FUNCTION TO
ASK QUESTIONS.
WE ARE GOING TO CO TO DO OUR BEN
THE SESSIONS TO ADDRESS THE
QUESTIONS DURING THE MEETING,
BUT IF YOUR QUESTION IS NOT
ANSWERED, WE WILL PROVIDE
SESSION FACILITATORS A COPY OF
ALL THE CHATS SO WE CAN FOLLOW
UP AS NEEDED.
THERE ARE SEVERAL PROGRAM BOOTHS
THAT ARE SET UP IN THE FOYER
OUTSIDE THIS ROOM.
SO PLEASE BE SURE TO VISIT THE
HEAL DATA ECOSYSTEM BOOTH SO
THEY CAN ASSIST YOU IN
COMPLETING KEY STEPS FOR MAKING
YOUR DATA HEAL-COMPLIANT AS WELL
AS PREPARING YOUR DATA FOR
PUBLICATION AND DISSEMINATION.
COMPLETING STUDY REGISTRATION
AND THE CDER STUDY LEVEL
METADATA FORM WILL AUTOMATICALLY
ENTER YOU INTO A RAFFLE FOR THE
CHANCE TO WIN PRIZES AND WE ALL
KNOW WE LIKE PRIZES SO AT THE
VERY LEAST, GO TO THE BOOTH SO
YOU CAN HAVE A CHANCE TO WIN A
PRIZE.
HEAL CONNECTIONS ALSO HAS A
BOOTH.
HERE YOU CAN LEARN MORE ABOUT
HOW THEY ARE CREATING PATHWAYS
TO BUILD AND SUSTAIN COMMUNITY
PARTNERSHIPS, AND SUPPORTING
RESEARCHERS IN MEANINGFULLY
ENGAGING AND SHARING RESULTS
WITH PARTNERS.
BECAUSE THEY, OF COURSE, WILL BE
THE ONES WHO WILL BENEFIT MOST
FROM THE RESEARCH FINDINGS.
WE'LL ALSO HEAR FROM HEAL
CONNECTIONS ABOUT THE COMMUNITY
ENGAGEMENT WORK THAT THEY'RE
DOING LATER THIS AFTERNOON.
AND THE PURPOSE NETWORK IS
AVAILABLE TO DISCUSS HOW THEY
ARE CONNECTING PAIN RESEARCHERS
ALONG THE CONTINUUM OF PAIN
RESEARCH FROM ALL DISCIPLINES
AND CAREER STAGES.
ALSO WHILE YOU ARE AT THE
CONFERENCE, YOU MIGHT WANT TO
HAVE ACCESS TO WIFI.
I JUST WANT TO REMIND YOU THAT
THERE IS A PASSWORD TO ACCESS
WIFI IF YOU HAVEN'T SEEN IT,
IT'S JPGHEAL2024 IN ALL CAPS.
SO AGAIN, JPGHEAL2024.
AND FINALLY, I'D JUST LIKE TO
THANK THIS YEAR'S PLANNING
COMMITTEES, BOTH THE
INVESTIGATORS AS WELL AS NIH
SCIENTIFIC STAFF, FOR DEVELOPING
A GREAT PROGRAM FOR US OVER THE
NEXT COUPLE OF DAYS.
SO TO BEGIN THE MEETING, IT'S
NOW MY PLEASURE TO WELCOME THE
DIRECTOR OF THE NATIONAL
INSTITUTE ON DRUG ABUSE AND THE
HEAL SCIENTIFIC CO-DIRECTOR, DR.
GL
>> GOOD MORNING, EVERYONE.
WELCOME TO THE FIFTH MEETING OF
THE HEAL SCIENCE MEETING WHICH
BASICALLY WAS STARTED IN 2019,
AFTER 2018, THE CONGRESS
APPROPRIATED THE FUNDS TO
ADDRESS ONE OF THE MOST
CHALLENGING CRISES THAT WE HAVE
SEEN IN OUR COUNTRY AS IT
RELATES TO DRUGS.
AT THAT TIME, WE BASICALLY WERE
SEEING AN UNPRECEDENTED NUMBER
OF PEOPLE DYING FROM OVERDOSES.
THIS WAS A TRAGEDY THAT HAD
HAPPENED AT LEAST TWO DECADES
BEFORE THEN, AND VERY MUCH
PUSHED BY THE OVERPRESCRIPTION
AND DIVERSION OF PAIN
MEDICATIONS.
AND THAT ACTUALLY RESULTED IN
PEOPLE BECOMING ADDICTED TO
OPIOIDS AND ALSO DYING ON
OVERDOSES.
THIS COULD NOT BE IGNORED WHEN
THE NUMBERS BECAME CLEAR WERE
HIGHER THAN THE NUMBER OF PEOPLE
THAT WERE DYING FROM CAR
ACCIDENTS, AND THAT BROUGHT THE
ATTENTION OF EVERYONE AND
IMMEDIATELY THEY RECOGNIZED THAT
WE NEEDED NOT TO JUST POINT
FINGERS ABOUT THE IMPROPER
PRACTICES OF MEDICINE IN
MANAGING PAIN, BUT RECOGNIZING
THAT THE FIELD OF PAIN HAD BEEN
NEGLECTED, AND SO HAD BEEN THE
FIELD OF SUBSTANCE USE DISORDER.
SO THIS NEGLECT COLLIDED IN WHAT
WE WOULD RIGHT NOW CALL THE
OVERDOSE CRISIS.
HOW BAD IS IT?
WE HAVE NOT BEEN ABLE TO BRING
IT DOWN.
THE LATEST NUMBERS ARE 112,000.
THAT'S APPROXIMATELY 1 PERSON
DYING FROM AN OVERDOSE EVERY
5 MINUTES.
AND THIS IS WHY WE ARE HERE
RIGHT NOW.
BECAUSE IT IS OUR OPPORTUNITY
THROUGH SCIENCE TO ADVANCE
KNOWLEDGE THAT CAN PREVENT THOSE
OVERDOSES.
AND THAT'S WHY -- TAKE ADVANTAGE
OF THE OPPORTUNITY OF BEING
TOGETHER, FORM NETWORKS,
COLLABORATIONS. I'M DELIGHTED
TO SEE THAT THE COMMUNITY
PARTNERS ARE HERE AND I WELCOME
THEM.
WE NEED TO OPEN THE DOORS BEYOND
ACADEMIC CENTERS AND CREATE A
DIVERSE WORKFORCE THAT WILL BE
MUCH MORE AMENABLE TO ADDRESS
THE REALITY OF THE PROBLEMS THAT
WE ARE FACING.
SO WITHIN THIS CONTEXT, IT'S A
TRUE PLEASURE FOR ME TO
INTRODUCE DR. LARRY TABAK, WHO
IS THE PRINCIPAL DEPUTY DIRECTOR
OF THE NIH, WHO'S GOING TO BE
ACTUALLY OPENING THE MEETING
WITH A SCIENTIFIC TALK.
AND IT IS A PRIVILEGE FOR ME TO
INTRODUCE YOU TO HIM NOT JUST
BECAUSE HE HAS PLAYED AN
EXTREMELY IMPORTANT ROLE IN THE
LEADERSHIP OF THE NIH.
HE WAS THE PRINCIPAL DEPUTY
DIRECTOR UNDER FRANCIS COLLINS
WHEN FRANCIS COLLINS STEPPED
DOWN.
HE WAS THE ACTING DIRECTOR OF
THE NIH, AND NOW WITH A NEW
DIRECTOR OF NIH, DR. MONICA
BERTAGNOLLI, HE'S ALSO -- HE HAS
BEEN APPOINTED THE PRINCIPAL
DIRECTOR FOR THE NIH.
AND SO HIS ROLE IS NOT JUST --
HAS BEEN INCREDIBLE IN TERMS OF
LEADERSHIP, BUT I ALSO WANT TO
RECOGNIZE HIS LEADERSHIP IN THE
WHOLE FIELD OF PAIN.
HE WAS DIRECTOR OF NIDCR, THE
DENTAL AND CRANIOFACIAL
INSTITUTE, FROM 2000 TO 2010.
AND IN THAT ROLE, HE ACTUALLY
WAS INSTRUMENTAL IN ADVANCING
THE SCIENCE OF PAIN, AND FROM
THEN WAS PLAYING A KEY ROLE IN
DRIVING THE PAIN CONSORTIUM TO
ADVANCE THE RELATIONSHIPS AND
THE OPPORTUNITY OF INSTITUTES TO
COME TOGETHER.
IN 2016, I WAS ACTUALLY -- OR
2016 MORE OR LESS, FRANCIS
COLLINS CALLED ME IN AND LARRY
WAS THERE AND HE SAYS, NORA,
WHAT IS IT THAT -- WITH THIS
OVERDOSE CRISIS, WHAT SHOULD WE
DO?
SO HE HAS BEEN THERE SINCE THE
BEGINNING.
IT WAS CLEAR THAT WE NEEDED TO
ADDRESS OVERDOSES, SUBSTANCE USE
DISORDER, BUT WE NEEDED TO
ADDRESS PAIN.
AND HE HAS BEEN ONE OF THE KEY
LEADERS TO ENSURING THAT WE
ADVANCE THE SCIENCE OF PAIN.
HE HAS ALSO BEEN A KEY LEADER IN
MAKING US ALL AWARE OF THE
NEGLECT OF ADDICTION.
AND IMPORTANTLY, I THINK HE HAS
ALSO BEEN ONE OF THE STRONGEST
DEFENDERS OF THE IMPORTANCE OF
DIVERSITY AND EQUITY.
SO IT'S A PLEASURE TO INTRODUCE
DR. LARRY TABAK, WHICH BY THE
WAY REQUIRES NO INTRODUCTION.
LARRY, PLEASE.
>> WELL, THANK YOU, NORA, FOR
THAT OVERLY GENEROUS
INTRODUCTION.
UP UNTIL YESTERDAY, MONICA WAS
GOING TO BE HERE, BUT THE FIRST
LADY INVITED HER TO TRAVEL WITH
HER TODAY, AND SO THAT WOULD
HAVE BEEN ABOUT THE ONLY THING
THAT WOULD HAVE TAKEN HER AWAY
FROM THIS.
SO WHAT I WAS ASKED TO STAND --
WHEN I WAS ASKED TO STAND IN FOR
HER, AT FIRST I JUST THOUGHT I
WOULD USE HER SLIDES.
AND THEN I REALIZED THAT THE
BEAUTIFUL PICTURE OF HER RANCH
WHERE SHE GREW UP DIDN'T QUITE
COMPORT TO THE APARTMENT HOUSE
IN BROOKLYN THAT I GREW UP.
SO I'VE CHANGED THEM A LITTLE
BIT, BUT I DO BRING YOU
GREETINGS FROM DR. BERTAGNOLLI
AND WE'LL SHARE WITH YOU SOME OF
THE THINGS THAT SHE HAS BEEN
SHARING WITH THE INSTITUTE AND
CENTER DIRECTORS AS SHE IS
ALMOST AT HER 100TH DAY IN HER
TENURE AS NIH DIRECTOR.
SO THE GEOMETRY OF THIS ROOM IS
REALLY INTERESTING.
ALL RIGHT.
GOOD LUCK TO THE NEXT
PRESENTERS.
ALL RIGHT.
SO REALLY, I'M JUST GOING TO
COVER TWO MAJOR POINTS.
THE FIRST IS TO JUST SUMMARIZE
FOR YOU THE VISION THAT THE NIH
DIRECTOR HAS BEEN SHARING WITH
US, BOTH THE CHALLENGES AND THE
OPPORTUNITIES AND THEN JUST TO
VERY QUICKLY REMIND YOU OF SOME
OF THE HEAL PROGRESS.
IT'S OKAY FOR NOW, BUT GET IT
SET UP FOR THE SPEAKERS IN THE
FUTURE.
SO THIS IS ONE OF THE THINGS
THAT DRIVES THE NIH DIRECTOR,
THIS UNDERSTANDING THAT IF YOU
LOOK AT OUR PEER NATIONS, WE
RANK VERY, VERY LOW IN TERMS OF
LIFE EXPECTANCY.
THESE ARE DATA THAT I'M SURE ALL
OF YOU ARE FAMILIAR WITH.
AND IT REALLY -- IT REALLY
CONCERNS ALL OF US.
YOU CAN POINT TO CERTAIN
FEATURES AS TO WHY THIS IS
POSSIBLE, BUT IT REALLY DOES,
YOU KNOW, CONCERN US ALL.
AND THEN THIS JUST PILES ON.
THIS IS THE LIFE EXPECTANCY
VERSUS HEALTH EXPENDITURE.
SO WE PAY MORE TO BE LESS
HEALTHY THAN ANY NATION ON
EARTH.
THAT'S SO MUCH BETTER, THANK
YOU.
I'LL AGREE TO THE POLICIES IF WE
CAN GET RID OF THAT BANNER.
OKAY.
THANKS VERY MUCH.
SO WHEN YOU LOOK AT LIFE
EXPECTANCY VERSUS HEALTH
EXPENDITURES, OUR COUNTRY IS
SUCH AN OUTLIER.
AND THIS IS SOMETHING THAT
SHOULD INFORM ALL OF OUR
THINKING AS WE CONSIDER WHAT WE
CAN DO TO IMPROVE HEALTH, BUT
THIS IS SOMETHING THAT IS
CENTRAL TO DR. BERTAGNOLLI'S
THINKING.
AND THIS IS A FACT THAT -- THIS
WAS ONLY A TEASE.
THIS IS A FACT THAT ALL OF YOU,
I THINK, ARE FAMILIAR WITH,
BECAUSE IT IS THE WORKING-AGE
ADULTS WHO ARE DYING AT HIGHER
RATES, AND THIS IS -- THE MAIN
DRIVERS, OF COURSE, ARE
SO-CALLED DRUG POISONING,
ALCOHOL-INDUCED CAUSES,
SUICIDES, AND THEN FINALLY,
CARDIOMETABOLIC DISEASE.
SO I THINK WITH THIS AS THE
BACKDROP, DR. BERTAGNOLLI HAS
ARTICULATED THESE GUIDING
PRINCIPLES, AND I THINK THEY'RE
IMPORTANT TO KEEP IN MIND AS THE
HEAL EFFORT GOES FORWARD.
SO THE FIRST IS OUR WORK IS NOT
FINISHED WHEN WE DELIVER
SCIENTIFIC DISCOVERIES.
OUR WORK IS FINISHED WHEN ALL
PEOPLE ARE LIVING LONG AND
HEALTHY LIVES.
NOW, ALL THE DEANS AND PROVOSTS
AND CHAIRS OF DEPARTMENTS TAKE
NOTE, IT'S NOT JUST A
PUBLICATION NUMBER.
AND WE ALL UNDERSTOOD THIS ALL
ALONG, BUT YET OUR ALIGNMENT
WITH THE REWARD SYSTEM IN
ACADEMIA ISN'T REALLY SYNCED UP
YET.
THE SECOND GUIDING PRINCIPLE
THAT SHE HAS ARTICULATED IS THAT
RESEARCH IS NOT ONLY ABOUT THE
LABORATORY, IT'S NOT ONLY ABOUT
THE CLINIC, BUT IT ALSO ENGAGES
THE COMMUNITY.
AND I HAVE TO SAY, HEAL HAS BEEN
AT THE FOREFRONT OF THIS AND HAS
BEEN USED AS THE EXEMPLAR AS WE
WERE DESCRIBING TO
DR. BERTAGNOLLI SOME OF THE
ONGOING WORK, AND SHE WAS
DELIGHTED TO LEARN ABOUT THIS
AND NO DOUBT WILL ENGAGE EVEN
FURTHER.
AND THEN FINALLY, AND AGAIN,
THIS IS SOMETHING THAT HEAL
UNDERSTANDS, PROGRESS IS
ACCELERATED WHEN ADVANCED
SCIENTIFIC METHODS SUCH AS DATA
ANALYTICS ARE APPLIED TO DATA
THAT INCLUDES EVERYONE, AND WHEN
NEW DISCOVERIES ARE RAPIDLY AND
EQUITABLY ADOPTED IN CLINICAL
CARE.
SO FIRST OF ALL, USE THE BEST
ANALYTICAL METHODS.
SECOND, MAKE SURE THAT THE DATA
ARE REPRESENTATIVE OF ALL
COMMUNITIES, AND THIRD, WHATEVER
YOU DISCOVER AND TRANSLATE INTO
TANGIBLES FOR OUR PATIENTS, MAKE
SURE ALL OF OUR PATIENTS CAN
BENEFIT.
NOT JUST THOSE WHO HAVE
RESOURCES.
SO THE VISION THAT MONICA HAS
ARTICULATED FOR THE NIH
LEADERSHIP TEAM HAS BEEN THAT WE
NEED TO CONNECT RESEARCH TO
PRIMARY CARE TO OPTIMIZE
OUTCOMES FOR ALL OUR PARENTS.
IF YOU THINK ABOUT WHERE MOST OF
US CAME FROM, ACADEMIC HEALTH
CENTERS, PRIMARY CARE WAS NOT
THE THING UPPER-MOST IN ONE'S
MIND, BECAUSE MOST OF ACADEMIC
HEALTH CENTERS ARE DRIVEN BY
SPECIALTY CARE.
OR SUPER SPECIALTY CARE.
YOU GO TO A LEFT KIDNEY DOC, NOT
A RIGHT KIDNEY DOC.
AND SO THIS REALLY DOES HAVE A
TRANSFORMATIVE POWER TO IT.
CONNECT RESEARCH TO PRIMARY CARE
TO OPTIMIZE OUTCOMES FOR
PATIENTS.
NOW, PRIMARY CARE DOCS ARE
SITTING IN THE AUDIENCE GOING,
WELL, I COULD HAVE TOLD YOU
THAT.
AND IT'S TRUE.
SECONDLY, TO EXPAND BIOMEDICAL
RESEARCH DATA USE TO INFORM NEW
RESEARCH AND IMPROVE HEALTH
OUTCOMES.
SO THE IDEA IS TO COLLECT DATA
ONCE AND THEN USE IT A LOT OF
TIMES.
AND INDEED, I THINK THAT IS AT
THE CENTER OF WHAT THE HEAL
ANALYTICS APPROACH HAS BEEN TO
CONNECT WHAT HAD BEEN TWO
COMMUNITIES THAT SORT OF VAGUELY
KNEW THAT EACH OTHER EXISTED,
THE OPIOID USE DISORDER
COMMUNITY AND THE PAIN
COMMUNITY, BUT NOW YOU'RE ALL
TOGETHER IN ONE ROOM.
YOU'RE IN THE POSTER ROOM
CONVERSING WITH ONE ANOTHER.
AND SO AGAIN, I THINK HEAL HAS
BEEN THE EXEMPLAR FOR THIS TYPE
OF THING, AND ALL WE CAN DO IS
SAY KEEP GOING, KEEP GOING AT
IT, BECAUSE IT'S SO IMPORTANT.
OKAY.
SO NOW JUST TO SHIFT GEARS, AND
AGAIN, THESE WERE THINGS THAT
MONICA WAS GOING TO SHARE WITH
YOU, AND THESE ARE THINGS THAT
MOST OF YOU ARE PAINFULLY AWARE.
LAUNCHED IN 2018, AS NORA SHARED
WITH YOU, AND THE GOAL WAS TO
FIND SCIENTIFIC SOLUTIONS TO THE
OPIOID PUBLIC HEALTH CRISIS.
WHAT'S THE DRIVERS?
AGAIN, THESE ARE DATA THAT YOU
ALL KNOW TOO WELL.
THE DRAMATIC EMERGENCE OF
FENTANYL IN THE MID -- 2015,
2016 ERA AND THE JUST INCREDIBLE
RISE IN CASES OF REPORTED
DEATHS.
AND AS SCARY AND LAGGING ONLY
SLIGHTLY BEHIND IS THE USE OF
STIMULANTS NOW.
THIS, TOO, IS VERY SCARY.
AND THERE'S A SLIGHT VICTORY,
IT'S JUST OVERWHELMED BY
FENTANYL AND STIMULANT.
AND IF YOU LOOK AT THESE DATA AS
A FUNCTION OF RACE, IT IS
AMERICAN INDIAN AND ALASKA
NATIVES AND AFRICAN AMERICAN AND
BLACK INDIVIDUALS WHO BEAR THE
DISPROPORTIONATE BURDEN OF THIS.
AND IT'S NOT THAT ANY GROUP IS
HELD HARMLESS, BECAUSE SADLY
EVERY RACIAL/ETHNIC GROUP IS
AFFECTED, BUT CLEARLY, AFRICAN
AMERICAN AND AMERICAN INDIAN AND
ALASKA NATIVES ARE DISPLAYING
DISPROPORTIONATE BURDEN HERE.
WHEN YOU LOOK AT THE PUBLIC
HEALTH CRISIS IN PAIN, TODAY,
50 MILLION ADULTS REPORT CHRONIC
PAIN, 25 MILLION OF THOSE ARE
SEVERE, DAILY SEVERE PAIN.
20 MILLION HAVE WHAT IS KNOWN AS
HIGH IMPACT PAIN.
THAT IS, IT LASTS MORE THAN
THREE MONTHS AND IT INTERFERES
WITH THEIR NORMAL LIFE.
SCHOOL WORK, SOCIAL ACTIVITY, ET
CETERA.
AND WHAT IS QUITE INTERESTING IS
THAT MORE RURAL THAN URBAN
DWELLERS REPORT PAIN.
28% OF RURAL VERSUS 16% OF URBAN
RESIDENTS WITH CHRONIC PAIN.
AND ANOTHER POINT THAT
DR. BERTAGNOLLI IS MAKING IS
THAT WE HAVE NOT ADDRESSED RURAL
HEALTH NEEDS TO THE SAME EXTENT
AS WE HAVE URBAN HEALTH NEEDS.
AND I THINK DURING HER TENURE,
THAT'S SOMETHING THAT SHE HOPES
TO REDRESS AS WELL.
SO HEAL BY THE NUMBERS.
THESE ARE JUST AMAZING NUMBERS.
SINCE 2018, 1800 RESEARCH
PROJECTS, EVERY STATE, OVER
$3 BILLION IN EXPENDITURES.
THE NEXT POINT IS SO VERY, VERY,
VERY IMPORTANT, AND I HAVE TO
GIVE TREMENDOUS CREDIT TO NORA
AND TO WALTER, WHO HAVE
PARTNERED SO EFFECTIVELY WITH 18
NIH INSTITUTES AND CENTERS.
AND FOR THOSE OF YOU WHO THINK,
WELL, WHAT'S THE BIG DEAL, IT'S
A BIG DEAL, OKAY?
BREAKING DOWN THE SILOS, MAKING
SURE THAT EVERYBODY FEELS
WELCOME, EVERY IS ENGAGED, AND
EVERYBODY BRINGS TO THE TABLE
THEIR UNIQUE EXPERTISE.
OVER 40 FDA SUBMISSIONS FOR
INVESTIGATIONAL NEW DRUGS OR
DEVICES, OVER 300 CLINICAL
TRIALS ONGOING.
AND ACTIVE ONGOING PARTNERSHIPS
WITH COMMUNITIES, FEDERAL, STATE
AND LOCAL AGENCIES, THE PRIVATE
SECTOR, AND, OF COURSE,
ACADEMIA.
SO HEAL IS NOT ANY ONE THING.
HEAL IS THE SUMMATION OF ALL OF
THE PARTS WHICH HAVE BEEN
INTEGRATED AND MELDED TOGETHER
TO CREATE THIS EXTRAORDINARY
EFFORT.
IT'S AN EFFORT THAT IS EMPOWERED
BY EACH AND EVERY ONE OF YOU IN
THIS ROOM, AND BY COUNTLESS
NUMBERS OF YOUR COLLEAGUES BACK
AT YOUR HOME INSTITUTIONS, AT
YOUR HOME ORGANIZATIONS, IN YOUR
COMMUNITIES.
AND SO REALLY, YOU ARE HEAL,%ALL
OF YOU, AND I REALLY APPLAUD
EACH OF YOU.
WE HAVE BEEN SETTING WITH HEAL
AN EXAMPLE FOR OPEN SCIENCE.
EARLY ON, WE REALIZED THAT IF WE
DISCOVERED SOMETHING BUT ONLY
TOLD PEOPLE WHO COULD AFFORD A
SUBSCRIPTION TO ONE OF THE
ONE-WORD JOURNALS, I WORRY ABOUT
CNS DISEASE, JUST TO LET YOU
KNOW.
THAT WOULD NOT WORK.
BECAUSE IT WAS IMPERATIVE TO GET
THE WORD OUT AS QUICKLY AS
POSSIBLE.
AND SO OPEN SCIENCE AND MAXIMAL
DATA SHARING ARE ABSOLUTELY
CRITICAL, AND THE HEAL DATA
ECOSYSTEM HAS BEEN DESIGNED AND
IS CONFIGURED TO BE A
USER-FRIENDLY INFRASTRUCTURE,
CENTRALIZED DATA MANAGEMENT
RESOURCES, WHICH TRANSLATES
INDEPENDENT DISCONNECTED DATA
INTO AN INTEGRATED WELL-ANNO
WELL-ANNOTATED CORPUS OF
INFORMATION THAT WILL PROVIDE
INSIGHTS FOR EACH OF YOU.
AND YOU'LL ALL LOOK AT IT IN A
SLIGHTLY DIFFERENT WAY AND
THAT'S THE WHOLE POINT.
SO THERE IS AN ECOSYSTEM BOOTH,
YES, JESS?
THERE IS AN ECOSYSTEM BOOTH AND
PEOPLE HAVE GREEN BUTTONS, FIND
ONE OF THOSE GREEN BUTTONS AND
SPEAK TO FOLKS ABOUT THIS.
BECAUSE ALL OF YOUR EFFORTS ARE
BEING COMPILED IN THIS MANNER.
IT'S UNIQUE IN MANY WAYS, AND IT
IS WHAT THE FUTURE LOOKS LIKE.
WHERE DISPARATE DATASETS ARE PUT
TOGETHER AND ALLOW ONE OF YOU,
AND I DON'T KNOW WHO E IT'S GOIG
TO BE, WHICH PERSON IT GOING TO
BE, MAYBE THAT PERSON IN THE
BACK WHO DOESN'T HAVE A SEAT?
I DON'T KNOW.
IT'S GOING TO BE, YOU KNOW, ONE
OF YOU WHO FINDS THAT NEW
INSIGHT.
THE PROGRESS HAS BEEN STUNNING.
FIRST IN HUMAN CLINICAL TRIAL OF
AN ANTIBODY TO PREVENT FENTANYL
OVERDOSE.
IT CAN'T HAPPEN QUICKLY ENOUGH
BUT WE'RE ON THAT ROAD.
PHASE ONE CLINICAL TRIAL FOR
NON-NNON-NARCOTIC SMALL MOLECULE
ANALGESICS FOR ACUTE AND CHRONIC
PAIN.
FINALLY, REALTIME MEASUREMENT OF
A CHRONIC PAIN SIGNATURE.
BUPRENORPHINE TREATMENT IS SAFE
AND EFFECTIVE.
FOR PEOPLE WHO USE FENTANYL.
THAT NEED TO BE DEMONSTRATED.
PEOPLE NEEDED TO BE CONVINCED.
COMMUNITIES NEEDED TO TAKE I ITP
AS AN APPROACH.
A NEW STANDARD OF CARE FOR
INFANTS BORN DEPENDENT ON
OPIOIDS, WHICH WAS PUBLISHED
BACK IN APRIL IN THE NEW ENGLAND
JOURNAL, IS ALREADY INFLUENCING
STATE LEVEL PRACTICE GUIDELINES.
THAT'S WHAT THIS RESEARCH IS ALL
ABOUT.
TO CHANGE THE WAY THINGS ARE
PRACTICED AND TO CHANGE PEOPLE'S
LIVES AND IN THIS CASE, THESE
INFANTS' LIVES.
HEAL IS INFORMING WORK OF OUR
SISTER AGENCY SAMHSA TO
DETERMINE NEEDS FOR NALOXONE AND
TO CREATE THE COALITIONS AND
COMMUNITIES THAT ARE SO
CRITICAL.
AND THEN THERE'S SOME NEW
PROGRAMS.
ONE WHICH I AM PARTICULARLY
EXCITED ABOUT AND PROUD OF, AND
I THANK THE LEADERSHIP, NORA.
THE NATIVE COLLECTIVE RESEARCH
EFFORT TO ENHANCE WELLNESS.
THIS IS GOING TO FUND
COMMUNITY-DRIVEN RESEARCH TO
ADDRESS OVERDOSE SUBSTANCE USE
AND MENTAL HEALTH AND PAIN, AND
THEN THERE'S THE PREVENTION AND
MANAGEMENT OF CHRONIC PAIN IN
RURAL POPULATIONS, WHICH HAS
JUST RECENTLY BEEN LAUNCHED.
SO NO ONE IS STOPPING, NO ONE IS
RESTING ON OUR, YOU KNOW,
SUCCESSES THUS FAR.
INDEED, WE ARE ENCOURAGED TO
PUSH EVEN HARDER, MOVE EVEN
FASTER, AND CONTINUE
COLLECTIVELY DOWN THIS ROAD.
SO WITH THAT, I WANT TO THANK
YOU ALL FOR INDULGING ME.
AGAIN, MONICA SENDS HER
GREETINGS, AND I WISH YOU JUST A
WONDERFUL, WONDERFUL CONFERENCE.
THANK YOU SO MUCH.
>> THANK YOU, DR. TABAK, FOR
SHARING THE NIH PRIORITIES AND
LEADERSHIP WITH US AND I
DEFINITELY APPRECIATE THE FOCUS
ON USING DATA TO IMPROVE HEALTH
OUTCOMES.
SO JUST ONE QUICK NOTE WHILE
WE'RE TRANSITIONING HERE, IF YOU
ARE PLANNING ON GOING TO THE
LIVED AND LIVING EXPERIENCE
COMMUNITY NETWORKING SESSION
DURING LUNCH, AND IF YOU HAVE
NOT YET ORDERED YOUR LUNCH,
PLEASE STEP OUT AND VISIT THE
TABLE OUTSIDE OF THE POSTER HALL
BEFORE 10:45, SO WE CAN MAKE
SURE THAT YOU HAVE LUNCH.
SO NEXT WE ARE GOING TO HAVE A
RESEARCH PROGRAM UPDATE FROM THE
JUSTICE COMMUNITY OPIOID
INNOVATION NETWORK, OR JCOIN.
SO I WOULD LIKE TO INTRODUCE THE
MODERATOR, DR. TISHA WILEY FROM
THE NATIONAL INSTITUTE ON DRUG
ABUSE AND THE JCOIN PRESENTERS.
>> THANK YOU, TAMARA.
WELL, THANK YOU ALL FOR THE
OPPORTUNITY TO PRESENT TO YOU --
OR TO REALLY MODERATE THIS PANEL
OF RESEARCHERS AND PARTNERS WHO
ARE PART OF THE JCOIN NETWORK.
AND BEFORE WE START, I JUST -- I
THINK WE HAVE THE NAMES OF
EVERYONE.
I SENT OTHER SLIDES SO I THINK
THERE'S ONE MORE SLIDE.
OR NOT?
DO I NEED TO ADVANCE SLIDES OVER
HERE WITH THE CLICKER?
I REALLY WANT TO THANK
DR. VOLKOW, DR. TABAK, NIH
LEADERSHIP FOR THE OPPORTUNITY
TO DO JCOIN.
JCOIN IS THE LARGEST INVESTMENT
THAT NIH HAS EVER MADE IN
JUSTICE SYSTEM WORK, AND I THINK
IT'S A REALLY IMPORTANT
INVESTMENT, AND I'M REALLY
PRIVILEGED HERE TO HAVE WITH YOU
TODAY SOME OF THE FOLKS THAT
REALLY MAKE JCOIN A REALITY.
AND I'M NOT GOING TO INTRODUCE
THEM BECAUSE I'M GOING TO LET
THEM EACH INTRODUCE THEMSELVES
AND SHARE A LITTLE BIT ABOUT
THEIR WORK AS WELL, BUT BEFORE
WE DO THAT, I'M GOING TO GIVE
YOU JUST A LITTLE BIT OF A BRIEF
OVERVIEW OF WHAT WE DO WITHIN
JCOIN.
I DO WANT TO EMPHASIZE AT THE
CORE OF WHAT WE DO, IT IS ABOUT
THIS PARTNERSHIP BETWEEN
RESEARCH AND PRACTICE, AND
UNDERSTANDING THAT THAT
PARTNERSHIP IN COMMUNITIES
CROSSES SECTORS, SO IT'S BOTH
THE JUSTICE SECTOR, AS WELL AS
SERVICES THAT ARE DELIVERED IN
COMMUNITY-BASED SETTINGS.
AND THOSE PARTNERSHIPS DON'T
JUST REACH THE COMMUNITIES, THEY
SHOULD BE SUSTAINABLE.
SO HOPEFULLY WHAT YOU'LL HEAR
TODAY IS AN EXAMPLE OF HOW THESE
PARTNERSHIPS ARE REAL, AND HOW
THAT GIVES AN OPPORTUNITY FOR
THAT TO BE SUSTAINED, AND BUILT
UPON AND LEAD TO THE NEXT THING
IN THE FUTURE.
SO BEFORE WE START, I JUST WANT
TO GIVE YOU ALL IF YOU'RE NOT
FAMILIAR WITH JUSTICE -- THE
JUSTICE SYSTEM AS A TARGET
SETTING, I WANT TO MAKE THE CASE
FOR WHY THIS IS AN IMPORTANT
SETTING, WHY I THINK IT'S ONE OF
THE HIGHEST LEVERAGE POINTS WE
HAVE AS AN OPPORTUNITY TO
ADDRESS THE OVERDOSE CRISIS.
YOU'VE ALREADY HEARD COVERAGE OF
REALLY THE GREAT LOSS OF LIVES
THAT WE'RE SEEING AND IT IS
CONTINUING UNABATED, SO WHY THE
JUSTICE SYSTEM?
THERE'S LOTS OF DIFFERENT
STATISTICS THAT MAKE THIS CASE.
WE'VE KNOWN FOR WELL OVER A
DECADE THAT WHEN PEOPLE ARE
LEAVING CARCERAL SETTINGS LIKE
JAILS AND PRISONS AND RETURNING
TO THEIR COMMUNITIES, THAT'S ONE
OF THE HIGHEST PERIODS OF RISK
FOR MORTALITY AS PEOPLE ARE
MAKING THAT TRANSITION.
THE DATA FROM OTHER SETTINGS,
THERE'S MANY, MANY STATISTICS I
COULD CITE THAT MAKE THIS CASE,
FOR EXAMPLE, RECENTLY IN
INDIANA, THEY LOOKED AT PEOPLE
THAT HAVE LOST THEIR LIVES AND T
THEIR LIVES TO AN OVERDOSE HAD
TOUCHED THE JUSTICE SYSTEM IN
THE PRECEDING YEAR.
AND IN RHODE ISLAND, THEY ARE
ONE OF THE INNOVATORS IN THIS
FIELD.
THEY WERE AMONG THE FIRST THAT
WERE OFFERING ALL THREE FORMS OF
MEDICATIONS FOR OPIOID USE
DISORDER.
MET DOAN, BUPRENORPHINE AND
NALTREXONE.
THEY'VE BEEN DOING THAT IN THEIR
JAILS FOR A WHILE.
BUILDING ON THAT WORK THEY WERE
ABLE TO DO SOME MODELING THAT
DEMONSTRATED THEY WOULD EXPECT A
31% REDUCTION STATEWIDE IF THEY
WERE TO OFFER THESE MEDICATIONS
IN JAILS AND PRISONS ACROSS THE
STATE.
SO THAT'S THE BACKDROP ABOUT THE
WHY WE DO THIS WORK.
AND SO AS WE HAD THE OPPORTUNITY
TO LAUNCH JCOIN, WE ALL CAME TO
A SHARED VISION, THIS IS
SOMETHING THAT WE DISCUSSED WHEN
WE FIRST LAUNCHED THE NETWORK,
AND IT'S A VERY SIMPLE IDEA, THE
IDEA IS THAT EVERY PERSON WHO'S
INVOLVED IN THE JUSTICE SYSTEM
THAT HAS A SUBSTANCE USE
DISORDER SHOULD HAVE ACCESS TO
EFFECTIVE TREATMENT, WHETHER
THEY'RE DETAINED OR IN THE
COMMUNITY.
AND AS WE LAUNCHED THE NETWORK,
WE HAD SEVERAL PRINCIPLES ABOUT
HOW WE WANTED TO APPROACH MAKING
A CONTRIBUTION TO THAT FIRST AND
FOREMOST THROUGH RESEARCH TO
GENERATE NEW EVIDENCE ABOUT WHAT
WORKS AND HOW TO GET THAT INTO
PRACTICE, BUT ALSO REALLY
BUILDING COLLABORATIONS ACROSS
THESE SECTORS OF JUSTICE AND
COMMUNITY PARTNERS AND RESEARCH,
TAKING THAT TO THE FIELD RIGHT
AWAY, BUILDING CAPACITY BOTH
AMONG RESEARCHERS AND COMMUNITY
PARTNERS TO USE AND APPLY
RESEARCH, AND HOPEFULLY THIS IS
A TOOL FOR SPEEDING SCIENCE TO
SOLUTIONS.
I DON'T WANT TO TALK TOO LONG
BUT JUST TO GIVE YOU WHAT IS
JCOIN, ULTIMATELY WE FUNDED 13
RESEARCH HUBS.
THOSE HUBS ARE EACH DOING LARGE
SCALE MULTISITE CLINICAL TRIALS.
WE'VE GOT LINKAGE FA TILL
TAIFACILITATIONSTUDIES LOOKING Y
WHAT HAPPENS WHEN PEOPLE RETURN
TO THE COMMUNITY FROM A JAIL OR
PRISON, ROLLOUT OF STATE
POLICIES, COMPARING LONG-ACTING
FORMULATIONINGS OF BUPRENORPHINE
AND NALTREXONE, STUDIES LOOKING
AT HOW WE APPROACH GETTING THE
STUFF INTO PRACTICE.
WE'VE MADE AN EFFORT TO MAKE
THIS A NATIONAL STUDY SO WE'VE
GOT A FOOTPRINT OF 140 COUNTIES,
38 STATES, AND ACROSS ALL OF
THESE STUDIES, WEAVER GOT DATA
SO FAR FROM ALMOST 23,000 PEOPLE
LOOKING AT THIS.
AND BEYOND THAT, WE'VE GOT TWO
SUPPORT CENTERS THAT DO A LOT
AROUND SORT OF BUILDING DATA PRO
TUCTSPRODUCTS AND TRANSLATING TT
BACK OUT BUT ALSO THOSE SUPPORT
CENTERS OR MAARC, GEORGE MASON
UNIVERSITY, HAVE GENERATED MORE
THAN 55 OTHER PROTOCOLS WITH
LOTS OF DIFFERENT KINDS OF
SCIENCE.
I'M PRIVILEGED TODAY TO HAVE
REPRESENTATIVES FROM TWO OF
THOSE MULTISITE CLINICAL TRIALS
HERE.
ONE IS IN THE STATE POLICY
ROLLOUT CATEGORY AND ONE IS A
LINKAGE FACILITATION STUDY, AND
I'LL LET THEM EACH DESCRIBE THAT
FOR YOU BECAUSE WITH THAT, I'M
GOING TO TURN AND LET YOU LISTEN
TO THE MORE INTERESTING PEOPLE
ON THIS PANEL, AND WE'LL TURN
AND LET EACH OF THEM INTRODUCE
THEMSELVES TO YOU IN TURN AND
TALK A LITTLE BIT ABOUT THEIR
WORK AND THEIR STUDIES, SO LET
ME START WITH DR. MICHELE
STATON.
>> I'M MICHELE STATON, PROFESSOR
IN THE UNIVERSITY OF KENTUCKY
COLLEGE OF MEDICINE, DEPARTMENT
OF BEHAVIORAL SCIENCE, CENTRAL
DRUG AND ALCOHOL RESEARCH.
AND I WANT TO START BY JUST
THANKING NIDA, TISHA AND THE
ENTIRE LEAD ARE SHIP TEAM FOR
ALL THEIR SUPPORT OVER THE LAST
FIVE YEARS.
I THINK YOU CAN HEAR THE PASSION
IN HER VOICE WHEN SHE TALKS
ABOUT JCOIN AND THE NEED TO
SERVE THE JUSTICE POPULATION.
JCOIN IS LARGELY SUCCESSFUL
BECAUSE OF THEM AND THEIR
LEADERSHIP AND THEY'VE BEEN SO
SUCCESSFUL AT THE HUBS DURING AN
UNPRECEDENTED TIME FOR DOING
RESEARCH IN CRIMINAL LEGAL
SETTINGS, SO WE'RE JUST VERY,
VERY GRATEFUL FOR THAT.
OUR KENTUCKY HUB IS THE ONLY
CLINICAL RESEARCH CENTER FUNDED
NATIONALLY THAT FOCUSES
EXCLUSIVELY ON WOMEN, AND WE'RE
REALLY EXCITED TO BE ABLE TO DO
THAT WORK.
SO MUCH OF THE WORK FROM THE
LEGAL SYSTEM HAS FOCUSED ON MEN,
AND WOMEN HAVE SOME REALLY
UNIQUE VULNERABILITIES WHEN IT
COMES TO OPIOID USE AND THE
PROGRESSION TO OPIOID USE
DISORDER.
SO WE'RE EXCITED TO BE ABLE TO
CARRY OUT A STUDY WHICH IS IN
THE LINKAGE FACILITATION
CATEGORY WHERE WE CONNECT WOMEN
WHILE THEY'RE INCARCERATED USING
A TELEHEALTH PLATFORM TO DO AN
INITIAL ASSESSMENT WITH
PROVIDERS IN THE COMMUNITY AND
THEN REALLY TRY TO CONNECT THEM
TO THOSE PROVIDERS ONCE THEY
LEAVE THE CARCERAL SETTING.
AND THEN WE DO FOLLOW-UPS IN THE
COMMUNITY USING PEER NAVIGATORS
TO REALLY DO EVERYTHING THAT WE
CAN DO TO REDUCE THE BARRIERS
AND CHALLENGES OF UTILIZING
SERVICES.
AND WE WORK WITH A WONDERFUL
TEAM OF PROVIDERS AND PEER
NAVIGATORS WHO MAKE ALL OF THIS
WORK POSSIBLE.
AND I KNOW WE'RE GOING TO TALK A
LOT ABOUT THE BROADER NETWORK
TODAY, BUT I CANNOT EMPHASIZE
ENOUGH THE IMPORTANCE OF THAT
PARTNERSHIP BETWEEN OUR RESEARCH
TEAM, OUR JUSTICE PARTNERS AND
OUR TREATMENT PARTNERS TO REALLY
BE ABLE TO CARRY OUT THIS WORK.
SO THANKS FOR BEING ON THE PANEL
TODAY, AND FOR BEING ABLE TO
SHARE THIS WORK WITH YOU ALL.
>> ALL RIGHT, HI, I'M KATY
MARKS.
I SERVE AS COMMISSIONER FOR
KENTUCKY DEPARTMENT FOR BEHAVIOR
HEALTH, DEVELOP ME.
IT'S AN ABSOLUTE HONOR TO
PRESENT AL WITH THIS TEAM TODAY
AND TO HEAR THE REFLECTIONS
EARLIER ABOUT THE VALUE OF
PARTNERSHIPS WITH OUR STATE
PARTNERS BECAUSE THAT HAS BEEN
MY JOURNEY, AND THAT'S WHAT I
WANT TO SHARE WITH YOU TODAY, SO
I'M ORIGINALLY -- I WAS TRAINED
IN EXPERIMENTAL PSYCHOLOGY AND
ASSISTANT PROFESSOR AT THE
UNIVERSITY OF KENTUCKY, AND I
SAW AN OPPORTUNITY TO MOVE IN TO
STATE GOVERNMENT AND TO A
SERVICE ROLE, AND TO NOT JUST
LEAVE THE UNIVERSITY SYSTEM BUT
TO FACILITATE THAT RELATIONSHIP.
I MORE RECENTLY BECAME THE
COMMISSIONER OF THE DEPARTMENT
BUT WHAT THAT MEANS IS I HAVE
THE OPPORTUNITY TO FACILITATE
THE STATE UNIVERSITY PARTNERSHIP
VISION TO REMOVE BARRIERS TO
IMPLEMENTATION, TO SUPPORT
SUSTAINABILITY, TO BRING ALONG A
TEAM.
MY CABINET THAT I WORK IN
INCLUDES MEDICAID, PUBLIC HEA
HEALTH, OUR PRESCRIPTION DRUG
MONITORING PROGRAM, OUR CHILD
WELFARE AGENCY AND OBVIOUSLY
BEHAVIORAL HEALTH THAT DOES
LICENSURE AND PROVIDER QUALITY,
AND SO TO BE ABLE TO BRING THESE
RESOURCES AND ASSETS TO THE
RESEARCH PLATFORM AND ALSO TO
BRING RESEARCH QUESTIONS THAT
INFORM DAY-TO-DAY WORK OF THE
STATE DEPARTMENT IS INCREDIBLY
REINFORCING.
I'LL ALSO ACKNOWLEDGE THAT I
HAVE A TEAM MEMBER THAT'S NOT
HERE TODAY.
SARAH JOHNSON, THE DIRECTOR FOR
SUBSTANCE USE DISORDER SERVICES
ON THE DEPARTMENT OF CORRECTIONS
SIDE, SO THE THREE OF US HAVE
BEEN ABLE TO, I DON'T KNOW, MOVE
MOUNTAINS, MICHELE?
THANK YOU.
>> BEFORE LIZ JUMPS IN, I JUST
WANT TO MENTION, I THINK I SAID,
WE COULD HAVE INVITED ANY OF THE
RESEARCH TEAMS UP HERE TO SHARE.
WE HAVE REALLY A NUMBER OF
WONDERFUL TEAMS.
IN THE INTEREST OF TIME, WE
INVITED PAIRS OF TWO INSTEAD OF
THE WHOLE -- BUT EVERY
COMMUNITY, WE'VE GOT THREE
PARTNERS, BUT HERE YOU'RE
HEARING FROM PAIRS, SO JUST IN
THE INTEREST OF TIME.
>> GOOD MORNING.
SO IT'S GREAT TO SEE SO MANY
FRIENDLY FACES IN THE AUDIENCE.
MY NAME IS LIZ EVANS.
I'VE BEEN STUDYING OPIOID AND
OTHER SUBSTANCE USE DISORDERS
FOR MORE THAN 30 YEARS, I CAN'T
BELIEVE IT, AND I SHARE THAT
BECAUSE I STARTED MY CAREER
SETTING PEOPLE OVER THEIR LIFE
COURSE DOING LONGITUDAL
RESEARCH, TRYING TO UNDERSTAND
HOW DO PEOPLE DEVELOP ADDICTION,
HOW DO THEY CHANGE.
AND SO MUCH OF THAT WORK OUT OF
UCLA DEMONSTRATED HOW SO MUCH OF
PEOPLE'S TIME IS SPENT IN THE
CARCERAL LEGAL SYSTEM AND NOT IN
TREATMENT SETTINGS, AND YET
OFTEN THOSE ARE SETTINGS WHERE
PEOPLE CANNOT ACCESS
EVIDENCE-BASED TREATMENT FOR
OPIOID AND OTHER SUBSTANCE USE
DISORDERS.
SO I CAME TO MASSACHUSETTS A FEW
YEARS AGO AND WAS SO PLEASANTLY
SURPRISED TO HEAR THAT
MASSACHUSETTS WAS ON THE BRINK
OF LEGISLATING THAT JAILS IN
MASSACHUSETTS PILOT OFFERING ALL
THE MEDICATIONS TO TREAT OPIOID
USE DISORDER INSIDE THE JAILS.
AND SO THIS WAS A GREAT RESEARCH
OPPORTUNITY.
I ULTIMATELY PARTNERS WITH PETER
FRIEDMAN, A PHYSICIAN SCIENTIST,
IN MASSACHUSETTS, AND WE'RE NOW
MPIs OF THE MASSACHUSETTS
JCOIN HUB, WHERE WE PARTNER WITH
OUR JUSTICE PARTNERS WHO -- ONE
OF WHOM YOU'LL MEET JUST IN A
MOMENT AND THE DEPARTMENT OF
PUBLIC HEALTH TO UNDERSTAND THE
IMPLEMENTATION, OUTCOMES AND
COSTS OF PROVIDING MEDICATIONS
INSIDE OF JAILS IN
MASSACHUSETTS.
AND SO THIS HAS BEEN A WONDERFUL
COLLABORATIVE EXPERIENCE.
WE WANT TO SHARE MORE ABOUT SOME
OF OUR LESSONS LEARNED IN BEING
A PART OF THE JCOIN NETWORK, NOT
JUST IN MASSACHUSETTS BUT THE
NATIONAL NETWORK.
SO WE'LL SHARE MORE.
>> GOOD MORNING, EVERYONE.
MY NAME IS ED HAYES, I AM THE
DIRECTOR OF AN OPIOID TREATMENT
PROGRAM LOCATED IN THE JAIL IN
RURAL WESTERN MASSACHUSETTS.
AND WE WERE AN EARLY ADOPTER OF
HAVING MEDICATION FOR OPIOID USE
DISORDER AVAILABLE IN A CARCERAL
SETTING AND IT HAS BEEN A REAL
PRIVILEGE FOR US TO COLLABORATE
WITH JCOIN AND I WANT TO EXTEND
MY GRATITUDE TO TISHA AND
DR. VOLKOW AND NIDA LEADERSHIP
BECAUSE THIS HAS BEEN ONE OF THE
MOST AMAZING PROJECTS THAT I'VE
BEEN ABLE TO PARTICIPATE IN IN
MY CAREER.
IT HAS BEEN EXTREMELY
TRANSFORMATIVE FOR THE WORK THAT
WE DO.
AND WE'LL BE TALKING MORE ABOUT
THAT SPECIFICALLY.
IN A SECOND.
>> AND IN MASSACHUSETTS, CAN YOU
JUST ACKNOWLEDGE YOUR TREATMENT
PARTNER AS WELL?
>> YEAH, SO, WELL, I'M NOT SURE
IF -- WHO YOU'RE REFERRING TO.
>> DINA, BUT --
>> YES, YES, WE HAVE AN AMAZING
COLLABORATOR IN THE DEPARTMENT
OF PUBLIC HEALTH IN
MASSACHUSETTS.
SO DINA BERNSON HEADS UP THEIR
DATA ANALYTICS OFFICE AND
MASSACHUSETTS HAS THIS RESOURCE
CALLED THE PUBLIC HEALTH DATA
WAREHOUSE WHERE IT LINKS
TOGETHER ADMINISTRATIVE DATA
COLLECTED BY INSTITUTIONS IN
MASSACHUSETTS ON MORE THAN 98%
OF THE POPULATION IN
MASSACHUSETTS.
SO THROUGH THIS COLLABORATION,
WE'RE ABLE TO ACCESS DATA ON
MOST PEOPLE IN MASSACHUSETTS,
INCLUDING INCARCERATED
POPULATION, TO UNDERSTAND THEIR
OUTCOMES OVER TIME, AS THEY
EXPERIENCE EVENTS AND IT'S
TRACKED IN THESE ADMINISTRATIVE
DATASETS.
SO WE'RE ABLE TO TRACK THINGS
LIKE OVERDOSE EVENTS, USE OF
HEALTHCARE EXPERIENCES WITH THE
JUSTICE SYSTEM, AND SOMETHING
THAT WE CREATED THROUGH JCOIN
WAS THE ABILITY TO HELP JAILS
CONTRIBUTE THEIR DATA TO THIS
AMAZING RESEARCH RESOURCE THAT
PREVIOUSLY WASN'T YET IN THAT
DATA SYSTEM.
SO ONE OF THE BENEFITS OF JCOIN
WAS HELPING THE JUSTICE SYSTEM
TO BE ABLE TO TAKE PART IN
RESEARCH BY GENERATING DATA THAT
COULD BE USED FOR RESEARCH
PURPOSES.
>> AND LIZ, I ACTUALLY LOVE THAT
YOU WERE LIKE, WHICH PARTNER?
BECAUSE I THINK THAT THAT'S
ACTUALLY -- IT'S SO INFUSED IN
WHAT WE DO, ONE OF THE
REQUIREMENTS IN JCOIN WAS NOT
ONLY DID THESE HAVE TO BE
MULTISITE STUDIES, BUT IN EACH
OF THE COMMUNITIES THEY WERE
WORKING IN, THEY HAD TO HAVE
PARTNERS IN ALL OF THOSE
COMMUNITIES.
I ACTUALLY REALLY LOVE THAT
QUESTION BECAUSE THAT SORT OF
SPEAKS TO HOW DEEP THE
PARTNERSHIPS ARE AND HOW
MULTILEVEL THEY ARE.
I JUST WANT TO START BY OPENING,
JCOIN IS A NETWORK SO WHAT DOES
THAT MEAN?
WHAT DOES IT MEAN FOR US TO HAVE
ASKED FOLKS TO JOIN US FOR
STEERING COMMITTEE MEETINGS,
COME HERE FOR ANNUAL MEETINGS,
PARTICIPATE IN PANELS LIKE THIS,
OTHER STUFF, SO I'M GOING TO
START WITH ED.
COULD YOU JUST SHARE SOME OF
YOUR THOUGHTS AND REFLECTIONS ON
WHAT IT'S MEANT TO YOU TO BE
PART OF THIS NETWORK?
>> YES, OF COURSE.
SO I THINK EACH OF US, IF WE
FIND OURSELVES IN A HOSPITAL, IN
THE CARE OF MEDICAL
PRACTITIONERS, WE HAVE THIS
EXPECTATION THAT THOSE MEDICAL
PRACTITIONERS, THAT HOSPITALS
CONNECTED TO RESEARCH THAT IS
GOING ON CURRENTLY, AND THAT IS
BECAUSE OVER THE PAST HUNDRED
YEARS OR MORE, THERE HAS BEEN AN
INFRASTRUCTURE BUILT UP TO
SUPPORT THE DISSEMINATION OF
KNOWLEDGE BETWEEN CUTTING EDGE
RESEARCHERS AND PRACTITIONERS IN
THE FIELD.
WORKING IN THE CRIMINAL JUSTICE
SYSTEM, I CAN SAY UNFORTUNATELY
THERE IS NO PARALLEL EXAMPLE.
THERE ARE EFFORTS TO DO THIS,
BUT THE CRIMINAL JUSTICE SYSTEM
HAS BEEN SEPARATE FROM THE WORLD
OF RESEARCH FOR TOO LONG AND
EVEN A CURSORY GLANCE AT THE
STATE OF THE CARCERAL SYSTEM IN
THE UNITED STATES, WE CAN SEE
THAT SO MANY FACILITIES ARE NOT
ONLY NOT MEETING THE STANDARD OF
CARE IN THE COMMUNITY, BUT ARE
WELL BEHIND IT, AND THIS HAS A
PROFOUND IMPACT IF WHAT WE'RE
TRYING TO DO IS ATTAIN PUBLIC
SAFETY.
SO JCOIN PROVIDED A SOLUTION TO
THIS THAT I HAD NEVER
EXPERIENCED BEFORE, AND IT WAS
EXTREMELY COMPELLING TO US.
THE FIRST AND MOST OBVIOUS THING
IS THAT WE HAVE AN OPIOID
TREATMENT PROGRAM IN OUR
FACILITY AND IF WE WANT TO DO
EVIDENCE-BASED WORK, ONE OF THE
MOST FUNDAMENTAL COMPONENTS OF
IT IS AN EVALUATION OF THE
PROGRAM.
WHAT IS WORKING, WHAT IS NOT
WORKING.
AND IT HARD TO DO THAT WHEN YOU
HAVE SO MANY THINGS TO DO AND
YOU'RE WORKING IN MEETING WITH
CLIENTS, RESOLVING CRISES THAT
THEY'RE HAVING, AND WHATNOT.
AND THE TEAM OF JCOIN
RESEARCHERS HAS STEPPED UP TO
HELP US WITH THE VERY
SOPHISTICATED EVALUATION
COMPONENT, AND THAT HAS REALLY
HAD PROFOUND IMPLICATIONS ON THE
ACTUAL DAY-TO-DAY WORK OF WHAT
WE'RE DOING.
WHAT IS WORKING, WHAT IS NOT
WORKING, WHAT DO WE NEED TO
ADAPT, WHAT ARE WE MISSING, WHAT
ARE THE GAPS?
AND BEYOND THIS, THERE'S A
CULTURE TO JCOIN, REALLY BESIDES
THIS EVALUATION COMPONENT, THE
NETWORK IS SO PROFOUND AND I
HAVE TO APPLAUD YOU, TISHA AND
JCOIN LEADERSHIP, BECAUSE
THERE'S REALLY TRULY A CULTURE
WITHIN JCOIN THAT IS INVITING,
IT'S WELCOMING, IT'S DARE I SAY
JOYFUL, AND YOU KNOW, FOR
PRACTITIONERS IN THE CRIMINAL
LEGAL SYSTEM LIKE MYSELFS, MYSES
A RE FEUNL AND AN OASIS TO BE A
PART OF THIS PROJECT AND TO
DEVELOP THESE NETWORKS AND
CONNECTIONS WITH RESEARCHERS,
AND IT A TWO-WAY STREET, YOU
KNOW?
YOU HAVE BEEN VERY INVITING AND
WELCOMING OF US, AND YOU'RE ALSO
GREAT LISTENERS.
SO IN MY EXPERIENCE AND MY WORK,
ONE THING WE NOTICED IN OUR
FACILITY WHERE WE TREAT A COHORT
OF INCARCERATED WOMEN IS, IN
2018, WE BEGAN TO WORK WITH
WOMEN.
AND ONE OF THE THINGS THAT WE
GRADUALLY NOTICED IN THE FIRST
COUPLE OF YEARS IS THAT
VULNERABLE POPULATIONS AT THE
INTERSECTION OF CRIMINAL LEGAL
INVOLVEMENT AND SUBSTANCE USE
DISORDERS HAVE EXTREMELY
PROFOUND CHALLENGES.
AND WHAT WE BEGAN TO SAW IS THAT
ALMOST 100% OF THE WOMEN IN OUR
CARE WERE SUSCEPTIBLE AND WERE
EXPERIENCING COMMERCIAL SEXUAL
EXPLOITATION, AND THIS HAS BEEN
AN EXTREMELY PROFOUND BARRIER TO
THE RECOVERY IN THE COMMUNITY,
AND I BROUGHT THIS UP IN MANY,
MANY MEETINGS, AND NIDA
RESPONDED BY CREATING A FUNDING
OPPORTUNITY TO ACTUALLY DO THIS
RESEARCH.
OF WHICH THERE'S VERY LITTLE IN
THE FIELD.
SO THERE WAS A TWO-WAY STREET
THAT WAS EXTREMELY IMPORTANT.
THE JCOIN NETWORK, GOING TO THE
MEETINGS, MEETING WITH
RESEARCHERS IS INCREDIBLE, BUT
NETWORKS ARE CONNECTED TO
NETWORKS.
AND SO AFTER OUR MEETING IN
DURHAM, NORTH CAROLINA,
IMMEDIATELY FOLLOWING IT, ARE
THERE WAS A CONFERENCE OF THE
ACADEMIC CONSORTIUM FOR CRIMINAL
JUSTICE HEALTHCARE, AND I MET
WITH SO MANY RESEARCHERS THAT
WERE DOING EXTREMELY INTERESTING
THINGS.
TRAUMA-RESPONSIVE WORK, LET
ALONE TRAUMA-INFORMED WORK IN
JAILS, AND WE WERE ABLE TO LEARN
THINGS AND ADOPT THEM AND
IMPLEMENT THEM IN OUR FACILITY,
ACTUAL CUTTING-EDGE RESEARCH.
SO IT'S BEEN A REAL PLEASURE AND
IT HAS BEEN A VERY SUCCESSFUL
ENDEAVOR FROM OUR END.
>> THANK YOU FOR SHARING, ED.
I WANT TO ACKNOWLEDGE LAURIE
DUSHARMS AND THE REST OF THE
NIDA TEAM THAT REALLY HELPED
MAKE ALL OF THIS WORK HAPPEN.
I WANT TO ASK MICHELE TO PICK UP
ON A THEME THERE, BECAUSE I
THINK -- I WANT TO HEAR HER
PERSPECTIVE AS A P.I. BEING PART
OF A NETWORK, BUT ALSO GIVEN
ED'S OBSERVATION, I THINK HER
TEAM PICKED UP ON THE IDEA AND
MAYBE YOU COULD SHARE SOME
THOUGHTS ABOUT THAT AS WELL.
>> I THINK JUST TO ANSWER THE
ORIGINAL QUESTION IN TERMS OF
THE IMPORTANCE OF THE NETWORK, I
THINK IT SO IMPORTANT THAT WE
BEGIN THIS FOUNDATION OF A
SHARED VISION.
I THINK WHEN YOU HEAR THE
PASSION IN ED'S VOICE, WE REALLY
DON'T HAVE TO CONVINCE JUSTICE
AND TREATMENT LEADERS THAT
SUBSTANCE USE IS A PROBLEM IN
PEOPLE WHO END UP IN THE
CRIMINAL LEGAL SYSTEM.
WE ALL START THERE.
AND IT'S A HUGE PROBLEM.
NOT ONLY WHILE THEY'RE
INCARCERATED, BUT THAT IT WILL
BE CHEAPER AND BETTER FOR
EVERYONE WHEN THEY GET OUT IF
THEY STAY OUT.
AND SO AGAIN, THAT SHARED
PURPOSE AND VISION IS SO
IMPORTANT.
AND I THINK THE JCOIN PLATFORM
REALLY PROVIDES THE PLACE FOR
THOSE CONVERSATIONS TO TAKE
PLACE.
WE DON'T JUST SAY AS
RESEARCHERS, HEY, I HAVE THIS
GREAT IDEA, I WANT TO PLOP IT IN
A PRISON AND SEE WHAT WORKS.
HOW COULD THIS BE IMPLEMENTED IN
YOUR FACILITIES, CAN YOU HELP
US, WHO SHOULD BE INVOLVED, WHO
ARE THE KEY PARTNERRINGS?
JUST THOSE BIG IDEA QUESTIONS.
AGAIN, TO TAG WHAT ED WAS
TALKING ABOUT, WE HAD A SITE
VISIT WITH NIDA LEADERSHIP VERY
EARLY IN THIS PROJECT, AND TISHA
AND THE TEAM WERE TALKING AND
TISHA HAD BEEN TO A MEETING
WHERE THERE WAS SOME EMERGING
RESEARCH AROUND SEX TRAFFICKING
AND SEXUAL EXPLOITATION AND SHE
SAID, ARE YOU COLLECTING ANY
DATA IN THIS SPACE?
WE HAD A COUPLE OF QUESTIONS,
BUT BECAUSE OF THAT QUESTION AND
BECAUSE OF A LOT OF THE THINGS
THAT ED WAS TALKING ABOUT
HAPPENING WITH HIS WOMEN, WE
WERE REALLY ABLE TO EXPAND THAT
WHOLE SECTION OF OUR DATA
COLLECTION TOOL, AND I'M REALLY
GLAD THAT WE DID.
OUR SAMPLES ARE RANDOMLY
SELECTED SAMPLE OF WOMEN IN NINE
DIFFERENT JAILS ACROSS KENTUCKY,
AND ABOUT 1 IN 4 OF THEM HAVE
HAD A HISTORY OF SEXUAL
EXPLOITATION, BEING THREATENED
OR MANIPULATED INTO COERCED SEX,
AND SO THAT'S JUST ONE EXAMPLE
OF THE THINGS THAT ARE COMING
OUT OF AT THIS NETWORK.
SO FOR ME, AGAIN, JCOIN REALLY
EMPHASIZED -- THE NETWORK PIECE
REALLY EMPHASIZES THAT WE ARE
ALL IN THIS TOGETHER AND AGAIN,
IT'S ABOUT HOW DO WE LEARN FROM
EACH OTHER TO DO THE BEST
POSSIBLE WORK TO HAVE THE BEST
POSSIBLE BENEFIT FOR INDIVIDUALS
WITH SUD IN THE CRIMINAL LEGAL
SYSTEM.
BEING ABLE TO USE THAT AS A
SHARED FOUNDATION IS WHAT
JCOIN -- MAKES JCOIN SO UNIQUE
AND CAN BE SHARED WITH
RESEARCHERS IN OTHER SPACE.
AND MY LAST POINT IS, I THINK
IT'S SO IMPORTANT THAT WE GET
THESE EVIDENCE-BASED MEDICAL
BEHAVIORAL AND PUBLIC HEALTH
INTERVENTIONS INTO THE CRIMINAL
LEGAL SPACE BECAUSE THERE ARE SO
MANY INDIVIDUALS THERE WHO HAVE
SUCH UNIQUE VULNERABILITIES WHO
DIDN'T GET TREATMENT WHEN THEY
WERE IN THE COMMUNITY DUE TO A
NUMBER OF ISSUES, AND WHO AREN'T
GOING TO GET TREATMENT IN THE
ABSENCE OF SOME OF THESE REALLY
INTENSIVE INTERVENTIONS WHEN
THEY'RE RELEASED.
SO WE REALLY WANT TO MAKE SURE
THAT POINT IS HEARD TODAY.
>> THANK YOU, MICHELE.
ACTUALLY TO PICK UP ON THAT
POINT, I KNOW MOST PEOPLE IN
THIS AUDIENCE PROBABLY DON'T DO
WORK IN THE JUSTICE SPACE, SO
I'D LIKE THE PANEL TO REFLECT ON
WHAT'S DIFFERENT ABOUT DOING
THIS KIND OF RESEARCH IN THE
JUSTICE SETTING, AND I'D
ACTUALLY LIKE TO GO TO KATY TO
COME AT THIS FROM WHERE SHE SITS
WITHIN A PUBLIC HEALTH AGENCY
LEADING PUBLIC HEALTH AT A STATE
LEVEL.
COULD YOU REFLECT WHAT YOU THINK
IS DIFFERENT ABOUT DOING THIS
WORK FROM A JUSTICE PERSPECTIVE?
>> MAYBE I'LL START WITH SOME OF
THE WAYS THAT IT'S ACTUALLY
RELEVANT TO EVERYONE.
SO THE SEQUENTIAL INTERCEPT
MODEL IS INCREDIBLY INSTRUCTIVE
IN UNDERSTANDING HOW IF YOU DO
HUMAN RESEARCH SUBJECTS, SYSTEMS
RESEARCH, YOU ARE ENGAGED IN THE
CRIMINAL LEGAL CONTINUUM, RIGHT?
SO COMMUNITY-BASED PROGRAMS THAT
WOULD PREVENT CRIMINAL LEEFL LEL
INVOLVEMENT ARE PART OF THAT
CONTINUUM.
OBVIOUSLY WHEN WE -- COURTS,
JAILS, PRISONS, RE-ENTRY AND
COMMUNITY-BASED HAVE EVERS,
AGAIN ON THE OTHER SIDE, TO
PREVENT RETURN TO INCARCERATION,
THIS IS ALL PART OF THE SAME
CONTINUUM AND THE SAME
INDIVIDUALS THAT ARE SERVED
BEHIND THE WALL ONE DAY ARE IN
THE COMMUNITY THE NEXT.
AND EVEN IF THEY'RE NOT, THEIR
FAMILY MEMBERS ARE.
SO I THINK IT'S IMPORTANT TO
REALIZE THAT WE'RE ALL DOING
THIS WORK TOGETHER.
BUT THERE ARE RELEVANT
DIFFERENCES AND THESE DON'T HAVE
TO BE WEAKNESSES BUT THEY'RE
DIFFERENT.
OBVIOUSLY WE HAVE STRUCTURAL
CHALLENGES, THE PROVERBIAL WALL
WE WORK BEHIND REQUIRES A
DIFFERENT MINDSET WITH COMMUNITY
AND VALID ETHICAL
CONSIDERATIONS, BUT ALSO THERE'S
HISTORICALLY BEEN THIS FUNDING
WALL THAT JCOIN HAS ESPECIALLY
BROKEN DOWN.
WHETHER IT BE THAT GRANTS DID
NOT FOCUS ON THE CRIMINAL LEGAL
SYSTEM OR GRANTS PROHIBITED
FUNDING TO GO TO THAT WORK OR
INDIVIDUALS WHO ARE INCARCER
INCARCERATED, AND THE THIRD,
BECAUSE HISTORICALLY MEDICAID
HAS NOT BEEN A BILLABLE SERVICE
WHILE SOMEONE IS INCARCERATED,
IT'S PREIVETTED STATE AGENCIES
FROM REALLY INVESTED IN RESEARCH
AND PARTNERSHIPS WITH
UNIVERSITIES, THAT STATE
UNIVERSITY PARTNERSHIP, IT
PROBABLY IS A DIFFERENT TERM IN
EVERY STATE, BUT THE IDEA THAT
WE CAN TAKE MEDICAID FUNDS AND
MATCH THEM WITH UNIVERSITY FUNDS
TO DO TARGETED INNOVATIVE
RESEARCH, IT'S REALLY KEPT US
FULLY OUT OF THE CRIMINAL LEGAL
SYSTEM OR AT LEAST WHILE PEOPLE
ARE INCARCERATED BECAUSE OF THIS
FUNDING WALL.
SO THINK ABOUT THE DIFFERENT
WALGS THAT HAVE EXISTED.
THERE'S ALSO POWER DISTRIBUTION
DIFFERENCES, RIGHT?
THERE IS A JUDICIAL DISCRETION,
WHICH CAN BE A LIMITATION.
WE HAVE CHALLENGES IN THE
DIFFUSE DISTRIBUTION OF DATA
SYSTEMS ACROSS A STATE AND STATE
VERSUS LOCAL CONTROL OF
PROCESSES AND PROTOCOLS, BUT
WHAT'S VALUABLE ABOUT THAT IS IT
MEANS THERE'S A LOT OF POINTS OF
INTERVENTION THAT WE CAN PRESS
ON TO MAKE SYSTEMS CHANGE.
AND SO I JUST KIND OF RETURN TO
THE BEGINNING TO SAY THAT
REMEMBER THAT WE'RE ALL DOING
THIS WORK IN ONE WAY OR ANOTHER,
AND THE DIFFERENCES AREN'T
LIMITATIONS.
>> THANKS, KATY.
MAYBE I CAN GO TO LIZ TO SHARE
HER PERSPECTIVE.
>> WHAT KATY SHARED REALLY
RESONATES WITH ME TOO.
THE JUSTICE SYSTEM HISTORICALLY
CAN BE THIS INVISIBLE PLACE.
WE NO IT AFFECTS HEALTH BUT WE
DON'T REALLY KNOW WHAT'S
HAPPENING IN THOSE PLACES.
SO JCOIN NOW GIVES US THE
OPPORTUNITY TO STUDY WITH INTENT
WHAT TYPES OF SERVICES ARE BEING
OFFERED INSIDE OF JAILS OR
COURTS OR OTHER PARTS ON THAT
JUSTICE CONTINUUM.
AND HOW DOES THAT SHAPE HEALTH.
SO FOR ME, THAT REALLY BRINGS UP
ISSUES OF HEALTH EQUITY.
I'M A PUBLIC HEALTH PROFESSOR,
WE'RE INTERESTED IN HOW DO WE
HELP FOLKS ACCESS
HEALTH-PROMOTING OPPORTUNITIES,
MAKE THE HEALTHY CHOICE, THE
EASY CHOICE.
AND SO OUR RESEARCH CAN HELP
JAILS AND PRISONS UNDERSTAND HOW
CAN YOU IMPLEMENT A PROGRAM LIKE
MEDICATION FOR OPIOID USE
DISORDER INSIDE OF JAILS.
IT'S AN AMAZING OPPORTUNITY TO
DO RESEARCH IN THE MOMENT THAT
CAN THEN BE TRANSLATED INTO
PRACTICE AS THE STUDY IS GOING
ON.
WE'VE BEEN ENGAGED WITH JCOIN
FOR THESE FIVE YEARS AND WE'RE
ALREADY SEEING OUR RESEARCH
RESULTS FROM THE EARLY DAYS OF
OUR WORK BEING TRANSLATED INTO
PRACTICE AND POLICYMAKING.
THAT HAS BEEN SUCH SUCH A REWARG
EFFORT FOR ME AS A RESEARCH
THAT'S RARE, IT CAN TAKE SO MUCH
TIME TO MAKE THE WAY INTO THE
HANDS OF THOSE WHO LEAD
INSTITUTIONS AND I FOUND IN
JCOIN ONE OF THE BENEFITS OF
BEING A PART OF THE HUB IS THE
CHANCE TO WORK IN PARTNERSHIP
WITH THOSE WHO ARE LEADING IN
THE JUSTICE SYSTEM BUT ARE ALSO
IN POLICYMAKING SPACES.
SO IT CAN BE CHALLENGING, OF
COURSE.
THESE SYSTEMS CAN HISTORICALLY
BE QUITE RIGID OR THEY'RE USED
TO DOING THINGS A CERTAIN WAY.
ON THE FLIP SIDE, AT LEAST IN
MASSACHUSETTS, I THINK THERE'S
RERECEPTIVITY TO ORGANIZATIONAL
CHANGE IN THE JUSTICE SYSTEM.
SO IT'S BEEN THIS OPPORTUNITY
FOR US TO PARTNER IN WAYS THAT
CAN HOPEFULLY IMPROVE POPULATION
HEALTH IN A RELATIVELY SHORT
TIME PERIOD.
>> THANKS, LIZ.
LET ME PICK UP ON THAT THEME AND
GO TO THE NEXT QUESTION, WHICH
IS, ONE OF THE THINGS WE'VE
REALLY TRIED TO EMPHASIZE IN
JCOIN IS ABOUT MAKING SURE THAT
THE WORK WE'RE DOING IS TRULY
VALUABLE TO OUR PARTNERS, AND
ONE INDICATOR OF THAT IS ABOUT
WHAT SORT OF SUSTAINED AFTER THE
STUDY GOES AWAY AFTER THAT
INFRASTRUCTURE OF THE RESEARCH
LEAVES SO MAYBE I'LL START WITH
ED AND JUST WORK ALL THE WAY
DOWN THE PANEL.
WHAT ARE YOUR REFLECTIONS ABOUT
WHAT'S SORT OF GOING TO BE
SUSTAINED, ANY LESSONS YOU'LL
CARRY FORWARD IN YOUR OWN WORK
AS YOU GO FORWARD?
>> WELL, THERE'S A LOT TO SAY.
FIRST I HAD AN OPPORTUNITY TO
PARTICIPATE IN A PROGRAM WITHIN
JCOIN LEAP, LEARNING EXPERIENCES
TO ADVANCE PRACTICE, WHICH IS
KIND OF A YEAR-LONG TRAINING
PROGRAM FOR PRACTITIONERS LIKE
MYSELF IN THE FIELD TO BECOME
MORE FAMILIAR WITH AND MORE
FLUENT WITH THE WORLD OF
RESEARCH AND HOW TO APPLY THAT.
THAT'S SOMETHING THAT I WILL
CARRY WITH ME FOR THE REST OF MY
CAREER, THE REST OF MY LIFE.
THESE NETWORKS, THEY DON'T JUST
SIMPLY GO AWAY WHEN YOU DEVELOP
THESE PARTNERSHIPS WITH REALLY
COLLEAGUES THAT WE WE'RE WORKING
WITH IN MASSACHUSETTS, WITH
INTRASTATE, OUR RELATIONSHIP
WITH THE DEPARTMENT OF PUBLIC
HEALTH HAS IMPROVED TREMENDOUSLY
BY WORKING VERY CLOSELY WITH
THEM ON EVALUATING THESE
PROJECTS.
LIKE I SAID BEFORE, THE NETWORKS
THAT ARE CONNECTED TO OTHER
NETWORKS, IT'S LIKE ONCE YOU
HAVE OPENED YOURSELF TO THESE
WORLDS OF KNOWLEDGE AND
RESEARCH, IT'S NOT -- YOU CAN'T
SIMPLY JUST DELETE THAT MOVING
FORWARD.
THIS BECOMES A RESOURCE THAT IS
AVAILABLE TO YOU MOVING FORWARD
FOREVER, AND THEN ALL OF THE
CONNECTIONS THAT I HAVE IN MY
WORLD AMONGST PRACTITIONERS, I
CAN LET THEM KNOW ABOUT THESE
RESOURCES AND INVITE THEM TO
PARTICIPATE INTO IT.
SO THAT HAS BEEN EXTREMELY
USEFUL.
LIKE I SAID, THIS DEVELOPMENT OF
THE NETWORK IS REALLY ESSENTIAL
FOR THE UNITED STATES CARCERAL
SYSTEM TO MOVE FORWARD IN THE
WAY THAT IT NEEDS TO.
>> AND MAYBE TAGGING ON THAT,
THE QUESTION WAS SORT OF LIKE
SUSTAINING THESE EFFORTS GOING
FORWARD, I THINK SOMETHING WE
CAN DEFINITELY AND ARE ALREADY
BUILDING ON IS THE DATA
CAPACITY, THE INFRASTRUCTURE
THAT WAS BUILT TO COLLECT DATA
INSIDE OF CARCERAL SETTINGS AND
TO HAVE THAT PUT INTO A PLACE
WHERE IT CAN BE ANALYZED TO LOOK
AT THINGS LIKE OUTCOMES AMONG
PEOPLE WHO HAVE BEEN
INCARCERATED, WHO DOES BETTER,
WHY AND HOW DOES THAT HAPPEN.
WE NOW HAVE THAT CAPACITY THAT
WILL ENABLE NEW RESEARCH TO BE
LAUNCHED.
SO ALREADY WE ARE WORKING WITH
OUR PARTNERS TO IDENTIFY NEW
RESEARCH QUESTIONS AND SUBMIT
NEW PROPOSALS AND GET WORK
GOING.
IT ALSO BEEN A GREAT VEHICLE FOR
US TO LEAD THAT RESEARCH BUT TO
MENTOR THE NEXT RESEARCHERS.
SO JCOIN PUTS TOGETHER SENIOR
FOLKS WITH MENTEES ALONG WITH
FOLKS WHO ARE WORKING ON THE
GROUND AND THE POLICYMAKING
WORLD ALL TOGETHER, SO IT'S THIS
REALLY FERTILE GROUND TO
IDENTIFY TIMELY AND IMPORTANT
RESEARCH QUESTIONS AND THEN COME
TOGETHER TO GET THAT WORK FUNDED
AND GET IT GOING.
SO I'M EXCITED TO SEE WHAT THE
FUTURE WILL HOLD IN THAT SENSE.
>> I'LL DOUBLE DOWN ON THIS
INFRASTRUCTURE OF RELATIONSHIPS.
THAT IS THE DATABASE OF
SUSTAINABILITY FROM MY
PERSPECTIVE.
WE HAVE A PROCESS TO ASK AND
RELY UPON EACH OTHER INFORMED
QUESTIONS AND TO SHARE ANY
IDEAS.
I THINK WE'VE MOVED INTO THE
WHAT IF WE DID THIS STAGE,
RIGHT, LIKE WHAT'S NEXT, AND
THAT'S REALLY EXCITING AND
THAT'S, AGAIN, INFORMED BY AN
PREACH YAITION OF THE ASSETS AND
NEEDS THAT STATE PARTNERS HAVE.
IT'S NOT JUST A DEFICIT-BASED
RELATIONSHIP OF WE'RE GOING TO
COME IN AND FIX AND CORRECT, BUT
TO SEE KIND OF THE FULL PICTURE
OF WHO WE ARE.
I THINK THE OTHER THING THAT'S
REALLY VALUABLE ABOUT THIS WORK
IS THAT IT ASKED AN
IMPLEMENTATION QUESTION WHICH IS
IMMEDIATELY RELEVANT TO STATE
PARTNERS, BUT IT PRODUCED STUDY
MATERIALS THAT ARE NOT
STUDY-SPECIFIC, AND SO I CAN
SHARE THE IDEAS AND WISDOM AND
PRODUCT OF JCOIN WITH PEOPLE
THAT NEVER WERE INVOLVED IN THE
JCOIN STUDY AND IT MEANS
SOMETHING TO THEM.
THERE'S NOT JARGON THAT'S
STUDY-SPECIFIC.
IT'S GOING TO HAVE AN ENDURING
CAPACITY TO INFORM AND CHANGE
SYSTEMS AND PRACTICES LONG AFTER
THE STUDY ITSELF IS OVER.
>> BEFORE MICHELE JUMPS IN, I
JUST WANT TO POINT OUT TO YOU,
THE QR CODE HERE, A LOT OF THE
RESOURCES THAT THE FOLKS HAVE
REFERENCED, YOU CAN FIND THAT ON
THERE.
I DIDN'T TALK A LOT ABOUT ALL
THAT INFRASTRUCTURE, BUT YOU CAN
FIND THAT THERE.
SO MICHELE?
>> I REALLY WANT TO EMPHASIZE
THAT POINT AS WELL.
FAYE AND HER TEAM WITH THE
COORDINATING CENTER HAVE DONE AN
AMAZING JOB.
IF YOU HAVEN'T CHECKED OUT THE
RESOURCES AVAILABLE THROUGH
JCOIN, I REALLY ENCOURAGE YOU TO
DO THAT.
YOU AS RESEARCHERS, YOU AS
PARTNERS, AGAIN, THINK IT HAS SO
MUCH RELEVANCE FOR EVERYONE
INTERESTED IN THIS WORK.
I THINK A THEME THAT YOU
PROBABLY HAVE HEARD ACROSS THE
PANEL TODAY IS THAT WE ARE ALL
IN THIS TOGETHER.
LIKE THIS IS -- WE ARE TEAMS OF
RESEARCHERS, TREATMENT PARTNERS,
JUSTICE PARTNERS, AND WE
VALUE -- KENTUCKY HAS MADE
TREMENDOUS STRIDES IN THE LAST
10, 15 YEARS AROUND TREATMENT
FOR INDIVIDUALS IN THE CRIMINAL
LEGAL SYSTEM.
THE LAST THING WE WANT TO DO IS
SAY HEY, HERE'S A RESEARCH
STUDY, THIS IS BETTER.
THEY ARE DOING SOME INCREDIBLY
VALUABLE WORK AND OUR JOB IS
REALLY TO FIGURE OUT HOW DO WE
WORK WITH YOU TO ADVANCE, AGAIN,
TREATMENT OPPORTUNITIES FOR THIS
VERY VULNERABLE POPULATION, AND
I THINK THAT'S WHERE
SUSTAINABILITY REALLY STARTS, IS
TO BEGIN WITH WHAT'S ALREADY
WORKING, WHERE DO YOU SEE SOME
OF THE GAPS, AND HOW DO WE BUILD
ON THAT.
SO I THINK REALLY VALUING WHAT
PEOPLE ARE DOING IS SO
IMPORTANT.
I ALSO THINK THROUGH THE
DISSEMINATION OF FINDINGS,
THAT'S REALLY IMPORTANT TO
INVOLVE PARTNERS, BECAUSE WE CAN
WRITE PAPERS FOR ACADEMIC
JOURNALS, WE CAN GET THOSE PEER
REVIEWED, THEY GO INTO THE
SCIENTIFIC LITERATURE, AND SOME
PRACTITIONERS MAY NEVER SEE
THAT.
SO HOW DO WE DISSEMINATE
FINDINGS FROM THESE STUDIES IN A
REALLY EFFECTIVE WAY FOR PEOPLE
WORKING IN THESE SYSTEMS.
AND THEN FINALLY, I THINK COST
IS REALLY IMPORTANT.
WE HAVE TO FIGURE OUT THE COST
BENEFIT OF SOME OF THE THINGS
THAT WE'D LIKE TO DO, AND REALLY
MAKE SURE THAT THAT IS CONVEYED
TO PARTNERS THAT THAT'S CONVEYED
IN THE SCIENTIFIC LITERATURE,
BECAUSE AT THE END OF THE DAY,
YOU WANT TO SAVE MONEY, RIGHT?
AND SO I THINK COST IS ALSO --
COST-EFFECTIVENESS, COST
ANALYSIS IS REALLY AN IMPORTANT
PART OF SUSTAINABILITY.
>> IF I COULD COME BACK TO KATY
FOR JUST A SECOND, YOU TALKED
ABOUT THE INFRASTRUCTURE OF
RELATIONSHIPS.
I KNOW I MENTIONED EARLIER, ON
THE STAGE WE ONLY HAVE ONE OF
THE SORT OF PAIRS OF -- OUR
STEERING COMMITTEE, THERE'S A
REPRESENTATIVE FOR EACH STUDY OF
THE P.I., THE JUSTICE PARTNER
AND THE BEHAVIORAL HEALTH
PARTNER, SO YOU'RE SEEING OUR
STEERING COMMITTEE GROUPS BUT
EACH OF YOU ARE MISSING ONE OF
YOUR PARTNERS.
KATY, I KNOW JCOIN OFFERED AN
OPPORTUNITY FOR YOU TO BUILD ON
RELATIONSHIPS WITH YOUR STATE
PARTNER.
COULD YOU SHARE A LITTLE MORE
ABOUT THAT?
>> A LOT OF TIMES WE THINK ABOUT
THE RELATIONSHIP BETWEEN
UNIVERSITY AND STATE, BUT THE
STUDY GAVE US AN OPPORTUNITY TO
BUILD INTERSTATE RELATIONSHIPS,
AND SO THE WORK THAT DIRECTOR
JOHNSON AND I HAVE BEEN ABLE TO
DO AS IS A RESULT OF THE PROTECD
TIME AND SPACE WE WERE GIVEN
THROUGH JCOIN IS REALLY EXCI
EXCITING.
THINGS LIKE BEING LEADERS ON AN
1115 APPLICATION TO CMS TO ALLOW
FOR MEDICAID TO THE ACTIVE PRIOR
TO RELEASE FROM INCARCERATION,
OR IDENTIFICATION IN BIRTH
CERTIFICATES FOR INDIVIDUALS
PRIOR TO RELEASE TO MAJOR
TRANSPORTATION INITIATIVES AND
TAKING PROBATION AND PAROLE
SPECIALISTS AND TURNING THEM
INTO EMPLOYMENT SPECIALISTS.
AND WHAT WAS REALLY IMPORTANT
ABOUT ABOUT JCOIN IS YOU ALL ASS
HOW THOSE WERE GOING EVERY TIME,
AND EVERY TIME I WAS SHOCKED
BECAUSE IT WASN'T THE STUDY YOU
WERE ASKING US ABOUT.
YOU WERE ASKING US ABOUT OUR
RELATIONSHIP AND WHAT'S NEXT,
AND TO FEEL VALUED AND TO HAVE
THAT PROTECTED TIME TO DO THAT
WORK WAS REALLY INNOVATIVE.
THANK YOU.
>> WELL, I MEAN, ALL OF THIS IS
REALLY A CREDIT TO EACH OF YOU,
AND TO YOUR RELATIONSHIPS.
I THINK IT SPEAKS TO THE POWER
THAT AS NIH AS A FUNDER, WE HAVE
TO CREATE OPPORTUNITIES FOR
PEOPLE TO BUILD THESE
RELATIONSHIPS.
I THINK WE HAVE TIME FOR ONE
MORE QUESTION, BUT BEFORE I DO,
I ALSO WANT TO ACKNOWLEDGE,
THERE ARE SEVERAL OTHER TEAMS
WITHIN JCOIN HERE IN THE
AUDIENCE.
CAN I JUST HAVE YOU RAISE YOUR
HAND IF YOU'RE FROM A JCOIN TEAM
OR STAND UP?
SO YOU CAN SEE THAT IT'S REALLY
LOTS OF AMAZING PEOPLE HERE.
AND THE WORK THAT'S HAPPENING IN
ALL OF THESE COMMUNITIES.
BUT I ALSO WANT TO REALLY
ACKNOWLEDGE, TOO, OUR
COORDINATION AND TRANSLATION
CENTER, WHICH IF I TRY TO NAME
ALL OF THE ORGANIZATIONS THAT
ARE PART OF IT, I WILL
DEFINITELY MISS THEM.
SO IT IS LED BY FAYE TAXMAN AT
GEORGE MASON UNIVERSITY WHICH
I'M ALSO SURE IS IN THE
AUDIENCE, WE'VE GOT NIDA TEAM
MEMBERS HERE, ADDICTION FORUM
DOES A LOT OF THE TRANSLATION
WORK AS WELL AND METHODOLOGY AND
ADVANCED ANALYTICS CENTER, I
THINK IS PROVIDING THE
INFRASTRUCTURE I THINK I KNOW WE
SET UP OUR NEXT PANEL THAT'S
GOING TO TALK ABOUT SORT OF THE
INFRASTRUCTURE OF THE HEAL DATA
ECOSYSTEM MORE GENERALLY WITHIN
JCOIN, WE'VE BUILT THAT
INFRASTRUCTURE TOO, AND WE'RE
HOPEFUL THAT AS THE STUDIES -- I
DIDN'T MENTION, MOST OF THE
STUDIES ARE ABOUT 80 TO 90%
COMPLETE.
THEY WERE ALL DELAYED FOR A
COUPLE YEARS BECAUSE OF COVID
BECAUSE OUR JUSTICE PARTNERS
UNDERSTANDABLY SAID LEAVE US
ALONE RIGHT NOW, WE'VE GOT OUR
HANDS FULL, AND WE'LL GET BACK
TO YOU WHENEVER WE'VE GOT THIS
UNDER CONTROL.
AND SO MOST OF THE STUDIES WERE
DELAYED BETWEEN ONE AND TWO
YEARS.
BUT AS THEY COME TO COMPLETION,
THEY'VE ALL COLLECTED COMMON
DATA ELEMENTS, SO LIKE MICHELE
HAS A SAMPLE OF ENTIRELY WOMEN
BUT SHE MIGHT HAVE A QUESTION
THAT SHE CAN PULL DATA FROM
WOMEN THAT PARTICIPATE IN ALL
THE OTHER STUDIES.
SO WE'RE REALLY EXCITED ABOUT
SORT OF THE FUTURE OF THAT AND I
WANT TO ACKNOWLEDGE OUR
UNIVERSITY OF CHICAGO
METHODOLOGY AND ADVANCED
ANALYTICS CENTER THAT WILL
PROVIDE US THE INFRASTRUCTURE TO
SUPPORT THAT KIND OF WORK AND
THE P.I.s AND THEIR RESEARCH
TEAMS HAVE DONE A LOT OF HEAVY
LIFTING TO ACTUALLY GET THE DATA
IN THERE AND DO THAT.
SO WITH THAT, LET ME JUST TURN
TO MAYBE A FINAL QUESTION.
IF NOT, WE'LL JUMP IN WITH
ANOTHER ONE, BUT LET ME JUST
SAY, ANY LAST THOUGHTS THAT YOU
ALL HAVE THAT YOU REALLY WANT TO
SHARE OR CONVEY ABOUT HOW PEOPLE
MIGHT THINK ABOUT BUILDING THESE
KINDS OF RESEARCH PRACTICE
PARTNERSHIPS SUSTAINING THEM AND
BUILDING THOSE RELATIONSHIPS OR
FINDING WHO THOSE PARTNERS ARE,
AND WE CAN JUST START WITH
MICHELE AND GO -- WE'LL ALLOW
EACH OF YOU TO SHARE YOUR
REFLECTIONS.
>> I'M GOING TO DEFER TO KATY.
I'M EXCITED ABOUT THIS QUESTION.
>> SO I'VE GOT SOME IDEAS FOR
FOLKS.
HAVING KIND OF MADE THIS
TRANSITION MYSELF.
HERE'S SOME THINGS YOU CAN DO TO
FIND YOUR FRIENDLY BEHAVIORAL
HEALTH PARTNER IN STATE
GOVERNMENT.
YOU CAN ENGAGE IN SERVICE WITH
THE STATE AND LOCAL INITIATIVES.
THERE'S SO MUCH HAPPENING IN THE
COMMUNITY.
FOR EXAMPLE, WE'VE GOT A
KENTUCKY JUDICIAL COMMISSION ON
MENTAL HEALTH AND IT IS A COME
Y'ALL, BECAUSE IT'S KENTUCKY,
COME Y'ALL PLATFORM TO TALK
ABOUT WHAT OUR CRIMINAL LEGAL
ISSUES ARE AT THE INTERSECTION
OF MENTAL HEALTH, SUBSTANCE USE
DISORDER AND DEVELOPMENTAL
INTELLECTUAL DISABILITIES.
ALSO COME TO LISTENING SESSIONS
THAT CABINETS HAVE.
YOU WILL HEAR PEOPLE IN THE
COMMUNITY SAY WHAT THEY NEED.
LOOK FOR YOUR STATE UNIVERSITY
PARTNERSHIPS.
NOT ONLY IS IT VALUABLE, IT'S AN
OPPORTUNITY TO MATCH MONEY AND
INCREASE CAPACITY TO DO
RESEARCH.
INCLUDE PEOPLE WITH LIVED
EXPERIENCE IN YOUR STUDY DESIGN
AND GRANT APPLICATIONS.
THEY WILL LEAD US BACK TO US AS
WELL BECAUSE THEY WILL TELL YOU
WHERE THE LIMITATIONS ARE IN
YOUR DESIGN AND WHAT THE NEEDS
ARE OF THE STATE.
PLEASE FOLLOW YOUR LEGISLATIVE
SESSIONS.
THESE ARE WHERE YOU WILL HEAR
UNEQUIVOCALLY WHAT THE NEEDS OF
THE STATES ARE, WHAT OUR
PRIORITIES ARE AND WHAT OUR GAPS
ARE.
YOU WILL HEAR US MISS DATA THAT
YOU HAVE AN ANSWER TO, YOU'LL
HEAR QUESTIONS THAT HAVEN'T BEEN
ANSWERED YET AND THAT'S WHERE
YOU CAN JUMP IN.
THEN PLEASE THINK ABOUT SERVICE
OPPORTUNITIES WITH NATIONAL
ORGANIZATIONS THAT PROVIDE TA
AND TECHNICAL ASSISTANCE TO
STATES.
IT'S ANOTHER WAY TO CONNECT WITH
US.
SAMHSA HAS AN OPIOID RESPONSE
NETWORK THAT WE REGULARLY REACH
OUT TO AND ASK FOR EXPERTS TO
COME SUPPORT US.
ASAM SERVICE OR LOTS OF STATE
ASSOCIATION LIKE THE NATIONAL
ASSOCIATION OF STATE ALCOHOL AND
DRUG ABUSE DIRECTORS.
SO PLEASE LOOK FOR THOSE AND I'D
BE HAPPY TO CHAT MORE AFTER.
THANKS.
>> THANKS, KATY.
>> I GUESS I CAN SHARE, IT TAKES
TIME TO BUILD TRUST WITH ALL OF
THESE PARTNERS, AND THROUGH
JCOIN, WE'VE DONE THAT.
SO JCOIN ITSELF IS A PLACE NOW
TO JOIN, AND SO I WOULD
ENCOURAGE FOLKS WHO ARE
INTERESTED IN THIS WORK TO COME
MEET ALL OF US WHO ARE A PART OF
JCOIN THROUGH US, IT WOULD BE
GREAT TO COLLABORATE ON NEW
RESEARCH THAT YOU MIGHT BE
INTERESTED IN.
SO THAT'S JUST ONE THOUGHT I
HAD.
I BET ED HAS OTHER THINGS TO
SHARE.
>> WELL, WITH YOU AS AN EXAMPLE,
LIZ, WHEN DID YOU MOVE FROM
WESTERN MASS FROM L.A.?
2017.
AND ONE OF THE FIRST THINGS THAT
LIZ DID WAS ATTEND OPIOID TASK
FORCE MEETINGS IN OUR COUNTY,
WANTING TO UNDERSTAND WHAT IS
GOING ON, WHAT ARE PEOPLE
WORKING ON, AND THAT'S HOW YOU
MET OUR MEDICAL DIRECTOR, WHO
REFERRED YOU TO ME TO DO SOME
WORK.
AND IT HAS BEEN AN INCREDIBLE
PARTNERSHIP FOR THESE YEARS,
WE'VE WORKED ON SEVERAL
PARTNERSHIPS.
BUT IT'S NOT SO EASY TO DEVELOP
RELATIONSHIPS WITHIN THE
CRIMINAL LEGAL SYSTEM.
SO GET OUT THERE IN THE
COMMUNITY AND SEE WHAT THAT
INSTITUTION THAT AGENCY, THAT
JAIL, THE PRISON IS DOING IN THE
COMMUNITY FORUM AND PARTICIPATE
IN THAT.
MAKE YOURSELF AVAILABLE TO THOSE
MEETINGS, ASK QUESTIONS, BE
ACTIVE, AND THEN SECONDLY ONCE
YOU DEVELOP A RELATIONSHIP WITH
SOMEONE IN THAT FIELD, WE ALL
KNOW THAT PEERS LISTEN TO PEERS,
YOU KNOW?
THIS IS SOMETHING THAT CROSSES
ALL OF HUMAN CIVILIZATION,
SOMEHOW WE'RE MORE COMFORTABLE
WITH PEOPLE IN OUR NETWORK.
SO FINDING A CHAMPION, SOMEONE
WHO IS WILLING TO PARTICIPATE IN
THE WORLD OF RESEARCH, DEVELOP A
RELATIONSHIP WITH THAT PERSON
WORKING IN THE CRIMINAL LEGAL
SYSTEM THAT CAN BE YOUR CHAMPION
AND CAN INTRODUCE YOU TO OTHER
PARTNERS WITHIN THE CRIMINAL
LEGAL SYSTEM, AND YOU KNOW,
START SOMEWHERE AND THEN DEVELOP
THAT NETWORK THROUGH PEERS AND
PEER ASSOCIATIONS.
THAT'S BEEN KIND OF A WONDERFUL
WORLD TO ME, IS TO BE AN
AMBASSADOR TO MY PEERS IN
MASSACHUSETTS AND THROUGHOUT THE
COUNTRY ABOUT THIS PROJECT, AND
WHY ACTUALLY IT'S NOT JUST ONE
MORE THING TO DO IN THE BUSY
WORK ENVIRONMENT, IS WORK ON
THIS RESEARCH, BUT LIKE HERE ARE
ALL THESE REASONS THAT IT HAS
BEEN SUCCESSFUL FOR US AND WHY
YOU MIGHT BE CURIOUS TO
INVESTIGATE IT YOURSELF.
>> MICHELE, ANY THOUGHTS YOU'D
LIKE TO SHARE?
>> I DEFERRED MY TIME TO KATY.
I'M STILL GOOD WITH THAT.
>> WELL, I THINK, THEN, YOU
KNOW, I HOPE YOU'VE HEARD SORT
OF THE -- I HOPE YOU'VE SEEN
THROUGH THESE RELATIONSHIPS
REALLY, I MEAN, IT'S A CREDIT TO
THE INVESTIGATORS.
THAT'S ONE OF THE THINGS THAT
WE'VE ALSO DONE IN JCOIN.
ED REFERENCED OUR LEAP TRAINING
PROGRAM, WHICH REACHES OUT TO
PRACTITIONERS BUT ALSO REACHES
OUT TO EARLY STAGE
INVESTIGATORS, AND THERE'S ALSO
A LEAP INVESTIGATOR PROGRAM
REALLY FOR PEOPLE WHO ARE TRYING
TO LAUNCH THEIR NIH CAREERS AS
INDEPENDENT FUNDED INVESTIGATORS
BECAUSE IT'S REALLY HARD TO DO
THIS WORK.
AND IT TAKES TIME AND IT TAKES
TRYING -- REALLY WORKING TO
UNDERSTAND THAT, AND WHETHER
YOU'RE WORKING IN THE JUSTICE
SYSTEM OR YOU'RE WORKING IN
EMERGENCY SETTINGS OR PRIMARY
CARE, THAT'S TRUE AS WELL.
IT REALLY TAKES THAT EFFORT TO
BUILD THOSE RELATIONSHIPS AND BE
THOUGHTFUL ABOUT IT.
SO WITHIN JCOIN, WE'VE TRIED TO
USE THIS OPPORTUNITY AS A
PLATFORM TO HELP BUILD THE NEXT
GENERATION.
SO SOME OF -- I KNOW ACTUALLY
MICHELE HAS BEEN PART OF THE
JUST TIS WORK THAT WE'VE DONE AT
NIDA THROUGH MANY ITERATIONS.
IT'S TAKEN US MANY ITERATIONS OF
THIS TO SORT OF LEARN AND BUILD
ON THAT, SO WE DO HAVE -- WE
ARE -- WE'VE RECEIVED PERMISSION
TO LAUNCH A SECOND ITERATION OF
JCOIN WHERE WE HAVE A FUNDING
ANNOUNCEMENT THAT'S CLOSED THAT
WILL BE REVIEWED SOON TO
CONTINUE OUR INFRASTRUCTURE, SO
A LOT OF THE KINDS OF THINGS
WE'RE TALKING ABOUT, INCLUDING
THE THINGS THAT SUPPORT THE
RESOURCES AT THIS LINK WILL
CONTINUE, AND IN THE SUMMER,
WE'VE PUT OUT A NOTICE OF INTENT
TO PUBLISH AND IN THE SUMMER YOU
SHOULD SEE AN RFA FOR NEW
RESEARCH HUBS DOING THIS WORK.
SO WE HOPE TO CONTINUE THIS
MOMENTUM BUILT ON THE LESSONS
LEARNED, COULD M DO MORE TOO ARD
ENGAGING PEOPLE WITH LIVED
EXPERIENCE AND MAKING SURE THAT
PERSPECTIVE IS REPRESENTED AS
WELL.
SO I REALLY WANT TO THANK
EVERYONE FROM THE PANELISTS TO
THE TEAMS THAT AREN'T UP HERE
TODAY AND EVERYONE THAT DOES
THIS WORK, BECAUSE I THINK IT
REALLY IS AFFECTING PEOPLE'S
LIVES.
I MEAN, ED IS OUT THERE DOING
THE HARD WORK EVERY DAY, TRYING
TO HELP PEOPLE ON THEIR PATH TO
RECOVERY AND MAKE THAT
TRANSITION BACK INTO THEIR
COMMUNITY AND STAY ON THAT PATH
TO RECOVERY.
SO WE'RE JUST REALLY THANKFUL
AND PRIVILEGED TO HAVE HAD THE
OPPORTUNITY TO HAVE THIS
PLATFORM TO BE ABLE TO WORK
TOGETHER, SO I WANT TO THANK THE
PANELISTS AND EVERYONE FOR
GIVING US THIS OPPORTUNITY TO
SHARE.
>> SO THANK YOU, DRS. WILEY,
STATON, MARKS, EVANS AND
MR. HAYES.
THAT WAS A WONDERFUL
PRESENTATION.
I REALLY ENJOYED HEARING ABOUT
ALL THE CROSS-AGENCY
COLLABORATION AND THE
PARTNERSHIPS AMONG PRACTITIONERS
AND RESEARCHERS, REALLY TO
ADDRESS THIS VULNERABLE
POPULATION AND THIS IDEA OF
RELATIONSHIP INFRASTRUCTURE IS
REALLY NICE.
SO WE'RE GOING TO TRANSITION NOW
TO THE NEXT SESSION.
WE ARE GOING TO HEAR FROM THE
HEAL DATA ECOSYSTEM TEAM.
SO PLEASE WELCOME DR. JESS
MASRIK, DIRECTOR OF THE HEAL
DATA ECOSYSTEM AND THE THREE
PANELISTS.
THEY'RE GOING TO SHARE THEIR
INSIGHTS AROUND OPEN SCIENCE.
ALL RIGHT.
JESS, ARE YOU READY?
>> OH, YEAH, WE'RE READY.
>> GO AHEAD.
>> HELLO.
IS THIS ON?
OKAY.
HI, EVERYONE.
HOW IS EVERYONE DOING?
I'M SO GRATEFUL THIS BRIGHT
LIGHT THAT WAS HERE LAST YEAR IS
NOT HERE THIS YEAR, SO I CAN SEE
EVERYBODY.
THIS IS WONDERFUL.
SO THIS IS A SESSION ON THE DATA
ECOSYSTEM.
YOU'VE HEARD A LITTLE BIT ABOUT
IT THIS MORNING ALREADY FROM
LARRY AND TISHA MENTIONED IT AND
JCOIN DATA ARE AVAILABLE THROUGH
THE ECOSYSTEM, SO GO, JCOIN!
I REALLY WANT TO THANK BEFORE WE
JUMP IN THE STEWARDS TEAM,
ESPECIALLY SUSAN DEBLIAK FOR
ORGANIZING THE SESSION AND OUR
SPEAKERS ARE AWESOME SO THANK
YOU ALL FOR BEING HERE WITH US.
SO I THINK EVERYONE HEARD ABOUT
THE ECOSYSTEM AT THIS POINT
BECAUSE IT'S BEEN MENTIONED A
FEW TIMES, BUT IT'S HEAL'S
SOLUTION TO SHARING DATA AND
INFORMATION IN AN OPEN AND
FLEXIBLE FORMAT, AND REALLY WHAT
WE WANTED TO DO WAS TRY TO MEET
THE DIVERSE NEEDS OF ALL THE
STUDIES ACROSS HEAL IN SETTING
UP THIS INFRASTRUCTURE.
SO WE HAVE TOOLS TO SUPPORT DATA
SHARING, SEARCH AND ACCESS, AND
WE ALSO HAVE TEAMS READY TO HELP
SUPPORT YOU IN YOUR DATA SHARING
ENDEAVORS, AND THEY HAVE A BOOTH
OUTSIDE, ALL WEARING GREEN
BUTTONS, THAT'S THE PLATFORM
TEAM, THE STEWARDS AND HEAL
CONNECTIONS.
HEAL CONNECTIONS IS A RELATIVELY
NEW PARTNER IN THE ECOSYSTEM.
THEY'RE REALLY WORKING TO BRIDGE
THAT GAP BETWEEN COMMUNITIES AND
PEOPLE WITH LIVED EXPERIENCE AND
PATIENTS AND THE DATA AND
RESULTS COMING OUT OF HEAL.
MANY PROGRAMS LIKE JCOIN ARE
DOING A GREAT JOB AT THIS
ALREADY, BUT WE'RE HERE TO
AUGMENT AND FILL GAPS AND
BROADEN THAT REACH.
CAN THE TEAMS WAVE?
ECOSYSTEM TEAMS? HI!
THERE THEY ARE.
THEY HAVE THEIR BUTTONS.
FIND THEM, THEY ARE YOUR PEOPLE,
THEY CAN HELP YOU.
AND WE ALSO HAVE -- I WANT TO
REALLY WELCOME SOME OF OUR
PANELISTS FROM OUR LIVING
EXPERIENCE PANELS IN
CONNECTIONS.
WE HAVE SOME OF THOSE FOLKS HERE
AS WELL.
IF YOU'RE COMFORTABLE WAVING AND
SAYING HELLO, WE'D LOVE TO SEE
YOU AS WELL.
THANK YOU FOR BEING HERE.
AWESOME, YEA.
ROUND OF APPLAUSE FOR THEM.
PERFECT.
OKAY.
SO SLIDES.
THOSE ARE WALTER'S SLIDES.
UH-OH.
OKAY, SO ACTUALLY WHILE WE'RE
WAITING FOR THE SLIDES I'M GOING
TO GO AHEAD AND INTRODUCE OUR
SPEAKERS BECAUSE I HAVE THEIR
BIOS RIGHT HERE SO I CAN JUST
READ THEM.
WE HAVE LAURA SIMONS.
LAURA IS A PROFESSOR IN THE
DEPARTMENT OF ANESTHESIOLOGY,
PERIOPERATIVE AND PAIN MEDICINE
AT STANFORD UNIVERSITY SCHOOL OF
MEDICINE.
SHE'S A CLINICAL PSYCHOLOGIST
WHO EVALUATES AND TREATS
CHILDREN AND ADOLESCENTS
PRESENTING WITH CHRONIC PAIN IN
THE PEDIATRIC PAIN MANAGEMENT
CLINIC AT STANFORD'S CHILDREN'S
HEALTH.
HER RESEARCH PROGRAM AIMS TO
UTILIZE A PAIN NEUROSCIENCE
PSYCHOLOGY APPROACH TO GAIN A
MECHANISTIC UNDERSTANDING OF
COGNITIVE AND EFFECTIVE
PROCESSES IN PEDIATRIC PAIN,
PERFORM RIGOROUS
PATIENT-ORIENTED RESEARCH THAT
TRANSLATES TARGETED ASSESSMENT
INTO MECHANISTICALLY INFORMED
TREATMENT APPROACHES FOR OPTIMAL
CLINICAL CARE AND LEVERAGE THE
UBIQUITY OF DIGITAL HEALTH TO
ENHANCE PATIENT ACCESS AND
REACH.
CENTRAL TO THESE GOALS ARE
PROJECTS TARGETING YOUTH WITH
CHRONIC PAIN AND UNDERSTANDING
AND TREATING CHRONIC PAIN IN
CHILDHOOD.
WE HAVE CHARLIE KNOTT -- OH, AND
I SHOULD SAY, LAURA IS WORKING
ON THE HEAL-FUNDED SPRINT STUDY.
WE HAVE CHARLIE KNOTT, WHO'S
PART OF THE HEALING COMMUNITY
STUDY, LEADER IN THEIR DATA
COORDINATING CENTER.
HE'S THE SENIOR DIRECTOR FOR
P.I. AND BI BUSINESS DEVELOPMEN.
HE LEADS STRATEGIC PLANNING AND
BUSINESS DEVELOPMENT FOR RTI
RESEARCH DIVISION.
WITH MORE THAN 30 YEARS OF
EXPERIENCE IN HEALTH SURVEYS, HE
LENDS TECHNICAL EXPERTISE TO
PROJECTS WHILE BUILDING
RELATIONSHIPS WITH CLIENTS AND
HELPING STAFF MEMBERS DEVELOP
THEIR CAPABILITIES.
HE'S INSTRUMENTAL IN RTI'S
ABILITY TO DESIGN DATA
COLLECTION AND MANAGEMENT
SYSTEMS LIKE HIPAA, FED RAMP,
FISMA AND THE PRIVACY ACT.
AND WE HAVE MARYANN MARTONE.
MARYANN COLEADS THE FAIR DATA
INFORMATICS LAB AT THE
UNIVERSITY OF CALIFORNIA
SAN DIEGO, AND HER CAREER HAS
FOCUSED ON NEUROINFORMATICS.
DR. MARTONE HAS BEEN INTIMATELY
INVOLVED IN A NUMBER OF OPEN
SCIENCE AND FAIR DATA SHARING
INITIATIVES, INCLUDING THE NIDDK
INFORMATION NETWORK, DKNET, THE
NEUROSCIENCE INFORMATION
FRAMEWORK, AND THE COMMON FUND
DATA ECOSYSTEM.
SHE IS A PRIMARY INVESTIGATOR
WITH THE HEAL PRECISION HUMAN
PAIN NETWORK DATA COORDINATING
CENTER, THE SPARK KNOWLEDGE
MANAGEMENT CORE, WHICH PROVIDES
DATA CURATION FOR THE HEALING --
RESTORING JOINT HEALTH AND
FUNCTION TO REDUCE PAIN, OR
REJOIN PROGRAM, AND SHE'S ACTIVE
IN PRODUCING INTEROPERABLE
KNOWLEDGE GRAPHS FOR SEVERAL
RESEARCH PROGRAMS WHICH YOU'LL
HEAR ABOUT TODAY.
OKAY, DO WE HAVE SLIDES?
AWESOME!
OKAY.
WHERE DO I POINT THIS THING?
LAURA IS GOING TO START BECAUSE
SHE'S GOING TO INTRO HER TEAM A
LITTLE BIT BEFORE HER TALK.
>> YEAH.
SO I'M DELIGHTED TO BE HERE, AND
HAVE THE OPPORTUNITY TO TALK A
LITTLE BIT ABOUT OUR SPRINT
STUDY.
SO MY FIRST SLIDE IS JUST
INTRODUCING MYSELF AND MY
COLLEAGUE AND FORMER POSTDOC E
EMMA BIGGS.
SHE HAD A HUGE ROLE IN SETTING
UP OUR PLATFORM TO ENSURE THAT
WE'RE NOT ONLY ALIGNED WITH THE
HEAL REQUESTS BUT THAT WE HAVE
THE OPPORTUNITY TO SHARE OUR
DATA AND MAKE IT MORE ACCESSIBLE
TO FOLKS IN THE FUTURE.
SO I'LL GO AHEAD AND GET
STARTED.
MY TALK IS GOING TO BE ABOUT
OPEN SCIENCE WITH BIG DATA USING
OUR SPRINT STUDY AS AN EXAMPLE.
SPRINT IS SIGNATURES FOR PAIN
RECOVERY IN TEENS.
THIS IS A MULTI-INSTITUTIONAL
INTERNATIONAL COLLABORATION WITH
TEAMS OF SCIENTISTS AT STANFORD
UNIVERSITY, UNIVERSITY OF
TORONTO, SICK KIDS TORONTO, AS
WELL AS UNIVERSITY OF BARCELONA
AND CINCINNATI CHILDREN'S.
IT'S I THINK THE LARGEST
MULTIMODAL BIOMARKER DISCOVER DY
STUDY IN ADOLESCENTS WITH
CHRONIC MUSCULOSKELETAL PAIN.
WE'VE COMPLETED OUR DISCOVERY
PHASE AND WE'RE IN THE PROCESS
NOW OF COLLECTING DATA FOR OUR
VALIDATION COHORT.
AND I'LL WALK YOU ALL THROUGH A
LITTLE BIT OF THE STUDY DESIGN
JUST TO GIVE YOU A LITTLE BIT OF
A FRAMEWORK OF THE TYPES OF DATA
THAT WE'RE GOING TO BE
COLLECTING, THAT WE ARE
COLLECTING, AND HOW WE'RE GOING
TO BE TRANSLATING THAT INTO OUR
OPEN SCIENCE AND SHARING
PLATFORMS.
ONE SHOUT OUT TO THE HEAL GROUP
AND THEIR COMMON DATA ELEMENTS.
ONE OF THE THINGS THAT WE'VE
WORKED REALLY CLOSELY WITH THEM
FROM THE START OF THE STUDY IS
TO ENSURE THAT MANY OF THE
QUESTIONNAIRES THAT WE'RE USING
ARE ALIGNED WITH BEST PRACTICES
AND THERE WAS RECENTLY A
PUBLICATION LED BY LAURA WODNER
THAT OUTLINES THE CHRONIC AND
ACUTE PAIN MEASURES FOR ADULTS
AND PEDIATRICS SO I ENCOURAGE
YOU TO CHECK THAT OUT IN THE
JOURNAL OF PAIN, AND OUR STUDY
IS INTEGRATING THOSE MEASURES AS
WELL.
SO WE IN THIS STUDY WE TOOK A
NUMBER OF KIND OF PIECES OF
PRIOR KNOWLEDGE SO THINKING
ABOUT WHAT'S BEEN PUBLISHED IN
THE LITERATURE REGARDING
UNDERSTANDING RECOVERY OR
PERSISTENCE OF CHRONIC PAIN IN
ADULTS AS WELL AS PEDIATRICS.
PARTICULARLY BECAUSE THE REALM
OF RESEARCH AND WHAT WE KNOW IN
PEDIATRIC CHRONIC PAIN IS PRETTY
LIMITED.
WE DID HAVE TO DRAW FROM OUR
ADULT COUNTERPARTS, ALTHOUGH
CHILDREN ARE NOT SMALL ADULTS SO
IT IS IMPORTANT TO STUDY THEM
UNIQUELY.
BUT WE USE THAT TO KIND OF
DEVISE THE FEATURES AND MEASURES
WE WANTED TO SELECT AS WELL AS
SOME EMERGING INNOVATIVE DATA IN
OTHER DOMAINS OF RESEARCH.
FOR EXAMPLE, LOOKING AT SURGICAL
RECOVERY AND LOOKING AT IMMUNE
MARKERS.
WHICH HAS NOT BEEN PREVIOUSLY
LOOKED AT IN PEDIATRIC PAIN.
SO USING THESE SORT OF DIFFERENT
METRICS AND MEASURES, WE CAME UP
WITH A REALLY RIGOROUS BATTERY
THAT WE PUBLISHED IN BMJ OPEN SO
I ENCOURAGE YOU AS WELL TO SEE
THAT PROTOCOL, THAT NOT ONLY
OUTLINES THE METHODS OF THIS
FOUR-HOUR STUDY BUT IT INCLUDES
VERY SPECIFIC METRICS REGARDING
THE PARAMETERS THAT WE'RE USING
ACROSS SITES.
AND IT INCLUDED SOME REALLY FUN
CHAL EX-, LIKE ACROSS EACH OF
OUR SITES WHERE WE'RE COLLECTING
DATA SO UNIVERSITY OF TORONTO,
CINCINNATI CHILDREN'S AND
STANFORD.
THERE ARE DIFFERENT MRI MACHINES
SO WE HAD THE OPPORTUNITY TO
COME UP WITH HOW WE'RE GOING TO
KIND OF CONSOLIDATE AND BRING
TOGETHER THOSE DIFFERENT
MACHINES TO GET SIMILAR DATA
OUTPUTS.
WHICH REALLY KIND OF IS ALIGNED
WITH THIS IDEA OF MAKING SURE
THAT WE CAN HAVE SOMETHING
THAT'S DISSEMINATABLE AND
GENERALIZABLE.
SO WE WERE ABLE TO, IN OUR
DISCOVERY COHORT, BE ABLE TO
TAKE THESE DIFFERENT PIECES OF
DATA FROM OUR QUANTITATIVE
SENSORY TESTING, OUR STRUCTURAL
AND FUNCTIONAL BRAIN IMAGING,
TASK-BASED -- OH, HERE WE GO.
NOW YOU GET TO SEE PICTURES!
ALL RIGHT.
SO THERE'S MY BEAUTIFUL TEAM.
THIS IS KIND OF THE PROGRESS OF
OUTLINING HOW WE KIND OF CAME UP
WITH OUR METHODS, AND YOU CAN
SEE HIGHLIGHTED THERE THE
PROTOCOL PAPER AS WELL AS THE
CDE PAPER.
THEN THIS IS KIND OF WALKING YOU
THROUGH SOME OF THE DIFFERENT
PIECES OF DATA I WAS JUST
MENTIONING, QUANTITATIVE SENSORY
TESTING, PAIN MODULATION,
STRUCTURAL MRI AS WELL AS
TASK-BASED MRI, OUR IMMUNE
MARKERS THAT WE WERE ABLE TO
LOOK AT ACROSS SITES, DOING QC
AND QA ANALYSIS TO ENSURE WE'RE
GETTING KIND OF THE SAME METRICS
ACROSS THE DIFFERENT
INSTITUTIONS, AS WELL AS OUR
QUESTION FLAREQUESTIONNAIRE DATT
CLINICAL END POINTS OF PAIN AND
FUNCTIONING.
SO YOU CAN SEE HERE, I'M NOT
GOING TO GO INTO THIS RESULT
BECAUSE I HAVE AN OPPORTUNITY TO
TALK MORE ABOUT IT TOMORROW, BUT
WANTED TO KIND OF SHOW YOU HOW
WE TRANSLATED ALL OF THAT
INFORMATION INTO A BEAUTIFUL
MACHINE LEARNING OUTPUT MODEL
THAT ALLOWS US TO LOOK AT THESE
DIFFERENT DOMAINS AND USING OUR
PRIOR KNOWLEDGE TO INTERPRET
WHAT THESE FEATURES MAY BE
INFORMING.
SO I'LL TALK MORE ABOUT IT
TOMORROW.
BUT THIS IS WHAT WE WERE ABLE TO
DISCERN REGARDING PERSISTENTLY
HIGH PAIN LEVELS.
WE HAD A DIFFERENT MODEL FOR OUR
PERSISTENTLY HIGH FUNCTIONAL
IMPAIRMENT.
AND I THINK THAT THIS REALLY
ALIGNS WITH OUR CLINICAL
EXPERIENCE AS WELL, IS THAT
OFTEN PERSISTENT PAIN AND
PERSISTENT DISABILITY DON'T
ALWAYS CORRESPOND ONE TO ONE, SO
BEING ABLE TO DEFINE DIFFERENT
BIOMARKER SIGNATURES THAT LOOK
AT THESE DIFFERENT PRESENTATIONS
IS SOMETHING WE'RE REALLY
EXCITED ABOUT.
SO LET'S TALK ABOUT THE DATA
SHARING AND OPEN SCIENCE
PRACTICES.
WELL, YOU KNOW, WE THINK THIS IS
REALLY IMPORTANT AND WE HOPE YOU
DO TOO.
BASED ON THE PRINCIPLES OF
COMMONALITY, WE DON'T PERSONALLY
OWN THIS DATA AND IT BELONGS TO
SCIENCE AND IT BELONGS TO THE
PEOPLE WHO PARTICIPATE AND THE
PEOPLE THAT WE WANT TO BENEFIT
IN THE FUTURE.
SO IN PARTICULAR IN THIS CASE,
IT'S YOUNG PEOPLE WITH CHRONIC
MUSCULOSKELETAL PAIN.
BUT HOPEFULLY WE CAN INSPIRE THE
ADULTS LIKE THE ADULTS HAVE
INSPIRED US.
AND THE PRINCIPLE OF
UNIVERSALISM.
I THINK THE FIELD HAS MOVED AWAY
FROM THE ELUSIVE P LESS THAN
.05, BUT I THINK THAT ENSURING
THAT WE'RE DELIVERING RIGOROUS
RESULTS THAT CAN BE REPEATED AND
REPLICATABLE IS CRITICAL FOR THE
FIELD MOVING FORWARD.
WE AIM TO IMPROVE OPENNESS,
INTEGRITY AND REPRODUCIBILITY,
SO THIS IS REALLY CRITICAL FOR
META-ANALYSES AS WELL AS NOT
HAVING TO REPROGRAM OR RE-CREATE
THE WHEEL FOR EVERY TASK OR
ANALYSIS.
THAT'S SOMETHING THAT SOMETHING
THAT WE'VE REALLY VALUED BECAUSE
IT WAS KIND OF CRITICAL IN A
MULTISITE STUDY BUT ALSO FOR THE
FUTURE OF DISSEMINATION OF
ENSURING THAT ALL OF OUR SCRIPTS
ARE GOING TO BE PUBLICLY
AVAILABLE, THAT WE HAVE
EVERYTHING SORT OF REALLY HOPELY
AVAILABLE REGARDING HOW WE DID
THE WORK THAT WE DID.
THIS ALLOWS THOSE WHO ARE DOING
THAT CHALLENGING WORK OF
DEVELOPING THESE COMPLEX VIPTS
SCRIPTSTO GET THE CITATIONS AND
PUBLICATIONS AND THE CRITICAL
THINGS THAT ARE IMPORTANT IN OUR
ACADEMIC WORLD THE CREDIT THAT
THEY DESERVE.
AND REALLY, IT'S OUR DUTY TO
FULLY UTILIZE ALL THE DATA THAT
OUR PARTICIPANTS CONTRIBUTE.
AS I MENTIONED, IT'S A FOUR
HOWRN STUDY VISIT THAT THESE
INDIVIDUALS ARE ENGAGING IN AND
THAT SHOULD TRANSLATE INTO NOT
JUST ONE PAPER OR ONE DISCOVERY
BUT A NUMBER OF DISCOVERIES THAT
CAN INFORM THE FIELD.
SO IN THINKING ABOUT THE
PRINCIPLES THAT UNDERLIE THE
APPROACH THAT WE'VE TAKEN, WE
WANTED WITHIN THIS PROJECT WITH
ALL OF THE DATA THAT WE'RE
COLLECTING FROM THE BEGINNING
THAT WE NEEDED A COMPREHENSIVE
DATA MANAGEMENT PLAN TO ALLOW
THE PROJECT TO SUCCEED AND
FACILITATE THE EXCHANGE OF
INFORMATION BETWEEN TEAM MEMBERS
AND BEYOND.
IN ADDITION, WE NEEDED TO MAKE
SURE THE DATA WAS MANAGED IN A
WAY TO SUPPORT BROAD DATA
SHARING AND WE'RE CONSIDERING
THE WHAT, HOW AND WHERE TO SHARE
MATERIALS, THERE WERE SEVERAL
THAT NEEDED TO BE BALANCED.
CONTRIBUTING AS MUCH DATA AS
POSSIBLE WHILE MAINTAINING THE
PROPER PRIVACY CONSIDERATIONS
AND INDIVIDUAL POLICIES.
ADHERING TO THE FAIR PRINCIPLES
THAT DATA MATERIAL SHOULD BE
FINDABLE, ACCESSIBLE,
IDENTIFIABLE AND REUSABLE IN A
WAY THAT ALLIANCE WITH BEST
PRACTICES FOR EACH OF THE FIELDS
WE WERE WORKING IN.
BECAUSE WE HAVE SUCH A WIDE
VARIETY OF DATA TYPES, WE NEEDED
TO FIND A DATA SHARING PLATFORM
THAT COULD ACCOMMODATE DIVERSE
DATA TYPES AND A METHOD OF
LOGGING METADATA THAT ALSO TOOK
A -- ALL THE DIFFERENT TYPES OF
FILES THAT WERE BEING GENERATED.
WE OPTED FOR THE OPEN SCIENCE
FRAMEWORK AS IT PROVIDED THE
FLEXIBILITY FOR DATA FORMAT,
ALLOWED FOR US TO INTEGRATE
OTHER DATA SHARING PLATFORMS
WHEN THERE'S MORE ESTABLISHED
METHOD LIKE OPEN NEUROFOR
NEUROIMAGING AND INTEGRATE
PLATFORMS WE COULD USE FOR
COLLABORATING DURING THE
PROJECT, LIKE GITHUB FOR THE
ANALYSIS SCRIPTS.
AN ADDED BENEFIT HAS ALLOWED US
TO HAVE FULL CONTROL OVER WHICH
PARTS OF THE DATA ARE MADE
PUBLIC AND WHEN.
FOR INSTANCE, WE CAN OPEN UP THE
PROCESS DATA AS SOON AS THE
PRIMARY OUTCOMES PAPER FOR THE
PROJECT IS PUBLISHED AND MAKE
PRIVATE VIEWING LINKS TO RAW
DATA FOR VIEWERS -- FOR
REVIEWERS UPON REQUEST.
ALL THE DATA COMPONENTS ARE
IDENTIFIABLE VIA PERSISTENT DOI
AND WE CAN APPLY THE LICENSING
REQUIREMENTS BY OUR INSTITUTIONS
TO ENSURE OUR WORK IS CORRECTLY
CITED WHEN USED.
OH, AND A LITTLE BONUS, YOU CAN
SEE HERE WE ALSO HAVE THE
OPPORTUNITY TO REGISTER OUR
ANCILLARY STUDIES.
SO IT CAN BE PUBLICLY KNOWN AND
AVAILABLE, ADDITIONAL STUDIES
THAT ARE INSPIRED FROM THIS
WORK.
SO MAKE SURE THE PROJECT IS
FINDABLE, WE HAVE LINKS TO STUDY
METADATA ON OUR OFS PAGE,
LINKING VIEWERS TO THE HEAL
METADATA, AS WELL AS THE
PREREGISTERED STUDY PLAN ON
CLINICAL DRIELS TRIELS.GOV, OUR
CLINICAL PAPER THAT I'VE
MENTIONED, AND OF COURSE WE HAVE
THIS REGISTERED AT CDER.
WE ALSO HAVE OPEN MATERIALS
HOSTED ON GITHUB AND WE'RE
WORKING ON VARIOUS TOOLS THAT
ARE PUBLICLY AVAILABLE ON THE
FLYWHEEL PLATFORM FOR MRI DATA
PROCESSING.
BY THINKING THESE RESOURCES,
WE'RE ABLE TO MAKE THESE
MATERIALS FINDABLE AND
ACCESSIBLE WHILE ENSURING THE
INFORMATION IS PRESENT FOR
PROPER A ACKNOWLEDGMENT AND
CITATION OF THE WORK AND
HOPEFULLY MAXIMIZING THE
RE-USABILITY OF THESE PRECIOUS
RESOURCES.
SO RIGHT HERE IS OUR SPRINT HEAL
PROJECT PAGE.
AND YOU CAN SEE THAT THE HEAL
METADATA SYSTEM HAS A
USER-FRIENDLY INTERACTIVE FORUM
HOSTED AT CDER WHICH ALLOWS YOU
HO FILL IN THE STUDY METADATA
WHICH IS NOT AUTOMATICALLY
PULLED FROM CLINICALTRIALS OR
NIH REPORTER.
OR IF IT'S NOT.
YOU CAN SEE HERE SOME OF OUR
STUDY CHARACTERISTICS THAT
ARE CROSS RECORD HERE SO IT'S
EASILY FINDABLE TO LEARN A
LITTLE MORE SO I ENCOURAGE YOU
TO CHECK IT OUT.
NOW I HAND IT OVER TO MY
COLLEAGUE HERE, CHARLIE.
>> THANK YOU.
GOOD MORNING.
CHARLIE KNOTT, PRINCIPAL
SCIENTIST AT RTI, HAPPY TO
REPRESENT THE HEALING COMMUNITY
STUDY.
WE HAVE OVER 500 SCIENTISTS
ACROSS FOUR STATES.
SO LET'S SWITCH GEARS AND TALK
ABOUT COMPLEX DATA SHARING,
EVIDENCE-BASED PRACTICES, ME DA
TATA AND THE HYBRID
INFRASTRUCTURES.
WE'RE GOING TO SWITCH GEARS FROM
FOUR-HOUR INTENSIVE IN TEAMS TO
A COMMUNITY TRIAL.
SO OUR POPULATION, OUR UNIT OF
ANALYSIS ARE THE COMMUNITIES.
OF THE 67 ACROSS THE FOUR
STATES, THERE'S ABOUT 8 MILLION
ADULTS, THERE'S 10 MILLION IN
TOTAL, 34 OF THOSE WERE RANDOMLY
ASSIGNED TO OUR INTERVENTION,
THE REMAINING 33 TO THE WAIT
LIST CONTROLS.
OUR CORE COMPONENTS, THIS IS
WHAT'S COMMUNITY ENGAGED AND
DRIVEN.
SO OUR COMMUNITY COALITIONS WORK
WITH OUR RESEARCH SCIENTISTS AND
THE PIs IN THE FOUR STATES TO
SELECT EVIDENCE-BASED PRACTICES
TO LOOK AT REDUCING OPIOID
OVERDOSE DEATHS.
SO EVIDENCE-BASED PRACTICES
REALLY WAS OEND, MOUD, AND
PRESCRIPTION OPIOID SAFETY
PRACTICES.
OUR HEALTH COMMUNICATION
CAMPAIGNS CENTERED ON THE SAME
THING BUT LOOKED AT ANTISTIGMA
AND GAVE COMMUNITY CHOICES
THAT'S TAILORED TO WHAT THE
COMMUNITY NEEDED.
SO LET'S REALLY TALK ABOUT THE
SCOPE -- WE WANT TO THANK NIH,
NIDA AND SAMHSA FOR THEIR
LEADERSHIP HERE.
WE REALLY HAD TWO MAIN BUCKETS
OF DATA.
ADMINISTRATIVE RAN THE GAMUT
FROM MEDICAID TO COMMUNITY LEVEL
NALOXONE DISTRIBUTION TO
SYNDROMIC SURVEILLANCE.
SO YOU CAN THINK OF IT.
WE REALLY DID TO THE HAVE THE
TIME TO WAIT FOR OFFICIAL
STATISTICS.
WE NEEDED PROVISIONAL DATA SO
OUR COMMUNITIES COULD LOOK AND
SEE HOW THEY NEEDED TO ADDRESS
THE OPIOID EPIDEMIC.
SO WE BUILT A VERY SOPHISTICATED
DATA EXTRACTION, TRANSACTION,
LOADING INTO OUR DATA
COORDINATING CENTER DATA LAKE,
AS WELL AS THE DATA DASHBOARDS
AT EACH OF THE COMMUNITIES AND
THE RESEARCH SITES.
WE HAD OVER 30 DATA USE
AGREEMENTS.
THERE'S TREMENDOUS VARIABILITY,
IT WOULDN'T SURPRISE YOU, FOR
SUPPRESSION, DATA LAGS.
IN TOTALITY, OUR CONSORTIUM WAS
CRUNCHING 7 BILLION RECORDS PER
MONTH TO CREATE 110 STUDY
MEASURES.
SO -- AND I'LL LIST A FEW OF THE
DATA SOURCES COMING UP.
THE DE NOVO SIDE, WE COULD
CONTROL A LITTLE BIT MORE.
WE HAD OVER 30 INSTRUMENTS,
50,000 VARIABLES, BOTH
QUANTITATIVE AND QUALITATIVE.
IT RAN THE GAMUT FROM COST AND
COST-EFFECTIVENESS TO REALLY
LOOKING AT OUR COMMUNITY
PARTNERS AND WHAT THEY NEEDED
AND GATHERING DATA.
WE DID COLLECT PII AND PHI ON A
SUBSET OF THOSE SURVEYS.
AS OUR UNIT OF ANALYSIS WOULD
CHANGE DEPENDING ON THE SURVEY
AND WHAT WAS NEEDED TO INFORM
THE INTERVENTION, THE CLINICAL
TRIAL, AND AN IMPORTANT THING TO
KNOW IS WE HAD A HYBRID
INFRASTRUCTURE.
THIS IS ALL HIPAA-COMPLIANT
DATASETS, AND COMPUTING
ENVIRONMENTS AT THE FOUR SITES
AND THE DCC, SO THIS IS
ENCRYPTED DATA ACROSS THE BOARD,
GIVEN THE SENSITIVITY OF THE
DATA.
I'M NOT GOING TO TALK ABOUT DE
NOVO BECAUSE I SAID THAT WAS IN
OUR LOCUS OF CONTROL.
BUT ADMINISTRATIVE DATA IN
AMERICA GIVEN THIS FRACTURED
SILOED NATURE OF HEALTHCARE, YOU
CAN SEE SOME OF THE KEY
CHALLENGES HERE.
OUR 12 DATA SOURCES ARE LISTED
IN THE LEFT MOST COLUMN FROM
MORTALITY, VITAL STATS, DOWN TO
CENSUS BUREAU FOR POPULATION
BASE.
WE HAD SOME UNIQUE APPROVALS
SUCH AS A DEA, DEPARTMENT OF
JUSTICE TO LOOK AT DATA 2000
WAIVER PROVIDERS IN OUR
COMMUNITIES.
SO THERE'S SORT OF TWO KEY
CHALLENGES THAT WE HAD TO DEAL
WITH AS A CONSORTIUM WERE DATA
LAGS.
YOU CAN SEE A DATA LAG OF ONE
MONTH UP TO ALMOST TWO YEARS FOR
SOME OF OUR HOSPITAL INPATIENT
AND ED CLAIMS.
SO WE JUST HAD TO MAKE SURE FOR
THE PROVISIONAL STATUS AND
LOOKING AND PLANNING PAPERS AND
ANALYSIS THAT THIS WAS REALLY
LOOKING AT IT IN THE RIGHT WAY
OF TIMING.
ANOTHER KEY CHALLENGE WAS
SUPPRESSION, AND YOU CAN SEE
HERE FOR VITAL STATS ACROSS THE
FOUR STATES.
THERE WERE SLIGHT DIFFERENCES IN
THE LAGS THAT RANGE TO 3 TO 11
MONTHS.
SUPPRESSION IS HIGHLY VARIABLE.
SO THERE WERE DIFFERENCES ACROSS
THE FOUR SITES, AND OUR RULES
FOR WHEN SUPPRESSION OCCURS WAS
THREE DIFFERENT RULES ACROSS THE
FOUR STATES.
SO THIS IS WHAT YOU HAVE TO DEAL
WITH WHEN YOU'RE DOING
COMMUNITY-BASED RESEARCH IN
AMERICA.
YOU NEED TO BE VERY
SOPHISTICATED IN HOW YOU'RE
GOING TO GATHER AND ANALYZE THIS
DATA.
SO LET'S TALK ABOUT SOME
SOLUTIONS AT A HIGH LEVEL,
THAT'S SORT OF DIVIDED INTO TWO
DOMAINS, PUBLIC PRIVATE AND
STUDY SPECIFIC.
LET'S START WITH THE RIGHT-HAND
COLUMN.
OBVIOUSLY THIS IS A
COMMUNITY-DRIVEN TRIAL, SO WE'VE
RECEIVED A FULL WAIVER OF HIPAA
TO COVER THE GAMUT.
WE COULDN'T CONSENT 10 MILLION
PEOPLE IN THE 67 COMMUNITIES.
WE SHARED CODE ACROSS THE
RESEARCH SITES TO EASE LOADS,
AND TO INCREASE QUALITY AND TO
ACCOUNT FOR SOME OF THE
DIFFERENCES I AND THE KEY
CHALLENGES THAT WE HAD.
WE CREATED A COMMON DATA MODEL.
THIS TRIAL STARTED IN 2019, SORT
OF BEFORE SOME OF THE NEW --
BEFORE HEAL DATA ECOSYSTEM CAME
ABOARD AND NIH DATA SHARING
POLICIES.
THAT'S CONTINUING TO EVOLVE.
SO WE HAD TO CREATE OUR OWN
UNIQUE COMMON DATA MODEL TO
COLLAPSE AND HARMONIZE THIS
DATA.
IT'S QUITE REMORNINGABLE WHEN
REMARKABLE WHENYOU'RE DEALING WN
RECORDS PER MONTH.
WE LOOKED AT JSON CAPABILITIES
FOR HEALTH EQUITY.
NOT ALL OF THESE DATA SOURCES
TRACK SOME OF THE ITEMS THAT WE
NEED, RACE/ETHNICITY, SEX, SOME
OF THE OTHER THINGS THAT WE WERE
DEALING WITH, SO WE JUST HAVE TO
ACCOMMODATE THAT.
AND IT MEANS SOME OF THE
ANALYSIS THAT WE WOULD LIKE TO
DO MIGHT NOT BE POSSIBLE FOR
SAID DATA SOURCE.
WE DID CREATE A UNIQUE BRIDGING
ADDENDUM WHICH ALLOWED US TO
SHARE THE QUALITATIVE DATA,
THOSE HOUR-LONG INTERVIEWS,
ACROSS THE RESEARCH SITES,
BECAUSE THE DATA WAS SO INTENSE,
WE WANTED TO MAKE SURE THE
CONSORTIUM HAD THE EXPERTISE TO
ANALYZE THAT DATA IN A TIMELY
MANNER.
AND I ALREADY MENTIONED THE
HIPAA HYBRID INFRASTRUCTURES.
ON THE PUBLIC PRIVATE, WE
RECEIVE UNIQUE APPROVALS AND
SPECIAL WAIVERS FROM DIFFERENT
DATA SOURCES.
THIS IS THE FIRST TIME SOME OF
THEM HAD EVER GRANTED ACCESS IN
THIS LEVEL OF DETAIL TO THIS
DATA.
DON'T UNDERESTIMATE THE AMOUNT
OF WORK THAT THAT TOOK.
WE DID USE EXISTING MEASURES AND
SCALES WHERE POSSIBLE AND
FEASIBLE.
JCOIN JUST WENT BEFORE US.
WE USED THEIR INSTRUMENT.
FOR OUR JUSTICE SECTOR, WE USED
A SUBSET OF THEIR NATIONAL
SURVEY, SO THAT WE COULD HAVE
COMMON DATA AND MAKE WISE USE OF
LIMITED GOVERNMENT RESOURCES.
WE INVOLVED STATE, COUNTY AND
LOCAL OFFICIALS ON TO OUR
COMMUNITY COALITIONS AND
COMMUNITY ADVISORY BOARDS.
IT MAKES SENSE, THEY WERE
INVESTED, THEY WERE SUPPORTED BY
THE STUDY, AND WE HAD TO
MAINTAIN CLOSE RELATIONSHIPS
OVER THE LAST FIVE YEARS.
JUST DUE TO THE THINGS THAT
CHANGES IN SOCIETY.
WE HAD THE COVID PANDEMIC, WE
HAD TELEHEALTH EXPLOSION, WE HAD
OTHER ISSUES THAT WE HAD TO DEAL
WITH FOR DATA SHARING AND DATA
GATHERING.
SO THE EMPIRICAL TRADEOFFS, I
SORT OF THINK OF IT AS A
FULCRUM.
IN THE U.S., I THINK THE FULCRUM
HAS BEEN WEIGHTED SO YOU
COULDN'T SHARE DATA.
IT'S NICE TO SEE THAT SORT OF
EVOLVING A LITTLE BIT FOR
RESEARCH.
WHERE IT'S A LITTLE BIT MORE
EASY, WE CAN TAKE ADVANTAGE OF
TREMENDOUS INTERNATIONAL AND
NATIONAL COMMON DATA ELEMENTS
LIKE THE HEAL DATA ECOSYSTEM,
REALLY CAN'T SPEAK WELL ENOUGH
ABOUT WHAT THAT ALLOWS A
RESEARCH COMMUNITY TO DO.
JOIN THE HEAL EFFORTS.
JOIN TEAM, LOOK AND SEE WHAT
OTHER GROUPS ARE DOING, RE-USE
THEIR INSTRUMENTS IF POSSIBLE.
IT VERY NICE TO LOOK AT VARIABLE
LEVEL METADATA AND HOW YOU CAN
SHARE AND COMBINE RESOURCES TO
BRING MORE EFFICIENCIES TO THE
WORK THAT WE'RE DOING.
NOW STUDY REQUIREMENTS, YOU JUST
HAVE TO DEAL WITH THOSE AS THEY
COME UP.
I MENTIONED ALREADY SUPPRESSION,
THE DATA USE AGREEMENT AND
WAIVERS.
IF YOU'RE NOT ALLOWED TO SHARE
DATA, YOU'RE NOT ALLOWED.
JUST TAKE THAT, TRY TO WORK WITH
THEM IN THE FUTURE BUT THAT'S
WHAT IT MEANS FOR THIS
PARTICULAR STUDY AND MOVE ON.
AND OBVIOUSLY WITH HIPAA AND THE
PHI AND PII, THAT WILL HAVE TO
BE SUPPRESSED BEFORE WE PUT IT
INTO THE REPOSITORY.
SO I THINK THAT'S MY LAST SLIDE
AND I GET TO TURN IT OVER TO
MARYANN.
>> IS THIS ON?
OH, YES, IT IS.
OKAY.
SO HI, I WAS INTRODUCED ALREADY,
AND I SPENT SO MUCH TIME LOOKING
AT THE CONTENT OF MY SLIDES I
DIDN'T LOOK AT THIS ONE TO SHOW
THAT I'M ALSO PART OF REJOIN
HEAL SO MY APOLOGIES TO MY
REJOIN COLLEAGUES.
THE TITLE OF MY TALK IS, BUT
WHAT DOES IT MEAN?
IT'S FOCUSING ON THE POWER OF
KNOWLEDGE GRAPHS FOR DATA
INTEGRATION.
WE'VE ALREADY HEARD A LOT ABOUT
DATA INTEGRATION AND THE VARIOUS
PLATFORMS THAT HEAL HAS FOR
BRINGING THINGS TOGETHER.
LAURA TOUCHED A LITTLE BIT ON
THIS BUT I THOUGHT IT WOULD BE
WORTHWHILE TO CONSIDER THE HEAL
DATA ECOSYSTEM AS A WHOLE IN ALL
OF THE THINGS THAT HAVE TO BE
DONE IN ORDER TO JOIN YOUR DATA
UP.
SO THE HEAL DATA ECOSYSTEM AS
YOU ALL KNOW, THERE ARE THE HEAL
STUDIES, THERE ARE A SET OF
RECOMMENDED REPOSITORIES AND I
WANT TO GIVE A SHOUT OUT TO MY
COLLEAGUES AT SPARK, WHICH IS
MENTIONED IN MY BIOGRAPHY, THIS
HAS NOW BECOME AN APPROVED HEAL
REPOSITORY, IT WILL BE
OFFICIALLY LISTED AND IT REALLY
FOCUSES ON BODY-BRAIN
INTERACTION, SPECIFICALLY THE
PERIPHERAL NERVOUS SYSTEM SO
IT'S A VERY POWERFUL PLATFORM.
SO DATA GOES INTO A REPOSITORY,
THERE'S VARIOUS METADATA
ELEMENTS.
YOU KNOW THAT YOU NEED TO BE
ABLE TO PUT FORWARD, COMMON DATA
ELEMENTS, BUT THERE'S ANOTHER
PIECE OF THIS CALLED THE
KNOWLEDGE HEAL GRAPH AND THAT'S
WHAT I'M GOING TO FOCUS ON
TODAY.
SO IF WE LOOK AT THE HEAL DATA
INTEGRATION STRATEGIES, WE'VE
TALKED ABOUT THE FACT THAT YOU
NEED TO REGISTER YOUR STUDY
LEVEL METADATA IN CDER, AND OVER
HERE ON THE RIGHT, I HAVE SOME
FICTIONAL STUDIES AND THEY
BASICALLY SHOW THAT BECAUSE
YOU'RE ALL USING THE SAME
REGISTRATION FORM AND YOU'RE
COLLECTING THE SAME INFORMATION,
THAT MEANS WE CAN QUERY ACROSS
THE DIFFERENT PROJECTS AT THE
LEVEL OF STUDY LEVEL METADATA
BECAUSE IT'S ALL BEEN NICELY
ORGANIZED.
THERE ARE ALSO REQUIRED COMMON
DATA ELEMENTS, WE'VE TALKED
ABOUT THOSE VARIOUS INSTRUMENTS
AND THINGS AND WHICH YOU NEED TO
USE AND STRUCTURE YOUR DATA IN A
CERTAIN WAY AND ALL OF THE
PROJECTS ARE REQUIRED TO USE
THEM.
THAT, AGAIN, GIVES US A LEVEL OF
INTEROPERABILITY.
IT DOESN'T SOLVE EVERYTHING BUT
IT AT LEAST SAYS THESE ITEMS
HAVE BEEN COLLECTED ACROSS THE
DIFFERENT DATASETS.
THE DATA DICTIONARY, HOWEVER, IS
ALSO ANOTHER IMPORTANT ELEMENT
OF THIS BECAUSE IF YOU GO ON THE
RIGHT SIDE, COMMON DATA ELEMENTS
WILL TAKE YOU SO FAR BUT ALMOST
IMMEDIATELY, IN ALL THE
DIFFERENT PROJECTS, THERE ARE
THINGS THAT ARE COLLECTED THAT
ARE EITHER SPECIFIC, UNIQUE,
THERE ARE NO COMMON DATA
ELEMENTS, SO YOU WILL GET A LOT
OF DATA ELEMENTS THAT WORK
WITHIN THAT PARTICULAR HEAL
CONSORTIA, BUT WHEN YOU GO AND
THEN TRY TO RECONCILE ACROSS
IT'S OFTEN VERY DIFFICULT, THEY
MAY BE TALKING ABOUT THE SAME
THING LIKE TISSUE SAMPLES AND
HISTOLOGY, THEY'LL HAVE A SET OF
VARIABLES THAT ARE NAMED, A DATA
DICTIONARILY HELPS IN THAT
BECAUSE IT BASICALLY GIVES YOU A
LISTING, IT SAYS HERE'S WHAT MY
VARIABLE IS NAME AND HERE'S
SOMETHING ABOUT THAT.
BUT IT IS OFTEN VERY DIFFICULT
IF YOU HAD TO TAKE ALL THE DATA
DICTIONARIES ONE-ON-ONE AND MAP
THEM TO EACH OTHER, IT CAN OFTEN
BE A VERY, VERY DAUNTING PROCESS
AND A LOT OF CONSORTIA STOP AT
THAT LEVEL AND JUST SAY YOU GUYS
CAN READ THIS, BUT I'M NOT GOING
TO DO ANYTHING FURTHER.
AND THAT'S WHERE THE HEAL
KNOWLEDGE GRAPH COMES IN.
THE HEAL KNOWLEDGE GRAPH AS IT
TURNS OUT IS A VERY POWERFUL
INTEGRATION STRATEGY.
ALSO AS YOU SEE IT ENABLES ALSO
POWERFUL SEARCH.
SO WHAT IS A KNOWLEDGE GRAPH?
I TOOK THIS OFF THE WEB FROM
IBM.
KNOWLEDGE GRAPHS WERE ALL THE
RAGE.
THEY BASICALLY ARE SEMANTIC
NETWORKS.
THEY REPRESENT A NETWORK OF
ENTITIES, WHETHER THAT IS BODY
PARTS, ASSAY TYPES, WHATEVER IT
IS.
AND THE RELATIONSHIP BETWEEN
THEM IS SORT OF CODIFIED.
SO YOU SEE HERE AN EXAMPLE FROM
THE HUMAN PHENOTYPE ONTOLOGY, IT
WOULD SAY THERE'S LOWER LIMB
PAIN AND RELATED TO LOWER LIMB
PAIN IS KNEE PAIN AND LIMB PAIN
AND OTHER SORTS OF PAIN.
SO THOSE RELATIONSHIPS ARE
CODIFIED.
THEY ARE ENCODED IN A WAY THAT
MACHINES CAN ACTUALLY OPERATE ON
THESE SO DEPENDING ON THE POWER
OF THE ONTOLOGY, YOU CAN
DOREENING OVER THEM, YOU CAN DO
THINGS THAT A HUMAN BEING WOULD
DO.
SO THE MACHINE NOW KNOWS THAT
KNEE PAIN SHOULD ALSO BE
RETURNED FOR LOWER LIMB PAIN
BECAUSE THE KNEE IS PART OF THE
LOWER LIMB.
SO THE HEAL KNOWLEDGE GRAPH
WHICH SITS BEHIND THE PLATFORM
ENCODES THESE RELATIONSHIPS IN
VARIOUS BIOMEDICAL COMMUNITY
ONTOLOGIES SUCH AS THE HUMAN
PHENOTYPE ONTOLOGY IN A WAY THAT
ALLOWS US TO BRIDGE ACROSS THE
DIFFERENT HEAL PROJECTS.
SO OUR PROJECTS PRECISION AND
REJOIN ARE AT RELATIVELY EARLY
STAGES COMPARED TO OTHERS.
DATA GENERATION IS JUST RAMPING
UP AND I WANTED TO SORT OF
ILLUSTRATE THE PROCESS THAT A
GROUP WOULD GO THROUGH, DATA
COORDINATING GROUP IN
PARTICULAR, TO HELP BRING
PROJECTS AND INTEGRATE THEM INTO
THE HEAL PLATFORM.
SO REJOIN AND PRECISION LIKE A
LOT OF THESE PROJECTS HAVE A LOT
OF WORKING GROUPS, EACH WORKING
GROUP GETS TOGETHER, DIVIDED
AROUND DATA TYPE, JOINT TYPE,
WHATEVER IT IS AND THEY COME UP
AND SAY THIS IS THE DATA THAT WE
NEED TO CONNECT, WE WANT TO BE
ABLE TO COMPARE ACROSS OUR
DIFFERENT STUDIES WITH THESE
DIFFERENT ELEMENTS.
THAT'S USUALLY JUST A FIRST
LEVEL.
THEN WHAT HAPPENS, THE DATA
COORDINATING GROUP, FOR EXAMPLE,
MYSELF WILL TAKE ALL OF THE
DIFFERENT GROUPS' OUTPUTS AND
SAY THIS ACTUALLY REPRESENTS THE
DATA DICTIONARY FOR THE ENTIRE
PROJECT.
SO IT TURNS OUT THREE OR FOUR
WORKING GROUPS ALL WANT TO
DESCRIBE A SUBJECT SO NO NEED TO
DESCRIBE IT IN THREE DIFFERENT
WAYS.
BUT THAT'S, AGAIN, JUST SORT OF
A FIRST STEP AT IT.
SO YOU CAN SEE HERE THE C
REPRESENTS COMMON DATA ELEMENTS,
H ARE HEAL DATA ELEMENTS, S ARE
SPARC DATA ELEMENTS AND RP ARE
REJOIN HEAL AND PRECISION DATA
ELEMENTS.
THERE'S A LOT OF DIFFERENT
THINGS THAT COME IN.
IT'S REALLY THIS MAPPING TO THE
ONTOLOGY THAT HELPS US ADD A
LAYER ON TOP THAT PROVIDES A LOT
OF INTEGRATIVE POWER.
SO FOR EXAMPLE, OVER ON THE
RIGHT YOU SEE THERE'S BEHAVIORAL
ASSAYS.
THERE'S SOMETHING CALLED THE
GAD2 THAT I PICKED OUT OF ONE
ONTOLOGY OR ANOTHER THAT
MEASURES ANXIETY.
IF YOU'RE SEARCHING FOR GAD2,
THAT'S FINE, YOU'D ALSO LIKE TO
BE ABLE TO SEARCH FOR THE FACT
IF ANXIETY WAS MEASURED.
SO MAPPING TO THESE ONTOLOGIES
ALLOWS THAT TO HAPPEN.
IT ALSO LETS YOU SHOW WELL,
THERE'S A GOOD 2, THERE'S ALSO A
GAD7, GAD10.
IT LETS YOU BRING ALL OF THESE
THINGS TOGETHER.
UNLESS YOU KNOW THE SCORING
SYSTEM OF EVERY SINGLE
INSTRUMENT, YOU MAY NOT KNOW
WHAT REPRESENTS SEVERE ANXIETY.
THOSE ARE HUMAN CONCEPTS.
YOU SAW THEM IN LAURA'S
PRESENTATION AS WELL.
SO IT IS A KNOWLEDGE GRAPH THAT
ALLOWS US TO ORGANIZE THAT
INFORMATION AND REALLY START TO
JOIN THINGS BASED ON
RELATIONSHIPS OF OTHER ENTITIES
THAT EXIST OUT THERE IN THE REAL
WORLD THAT WE CAN CODIFY.
SO IF YOU ACTUALLY LOOK AT HEAL
AND IF YOU'VE DELVED DEEPLY INTO
THE HEAL DATA PLATFORM YOU'LL
SEE -- WE'VE HEARD FROM LAURA
ALREADY ABOUT EXPLORING THROUGH
THE PLATFORM, YOU CAN PUT IN
KEYWORDS, YOU CAN PUT IN VARIOUS
STUDY LEVEL METADATA AND YOU
WILL TURN STUDIES.
BUT THERE'S ALSO THE HEAL ?AN
SEMANTIC NETWORK THAT LETS YOU
QUERY IT THROUGH THESE CONCEPTS
AS I JUST WAS TALKING ABOUT.
SO YOU CAN FIND THE BUTTON ON
THERE AND CAN YOU GO AND EXPLORE
IT.
BUT IF YOU GET TO IT, IT
BASICALLY WILL TAKE YOU TO THE
SEMANTIC SEARCH.
HERE YOU GO AHEAD AND ENTER IN A
CONCEPT THAT SAYS LOWER LIMB
PAIN IN VERY SMALL LETTER, BUT
IT WILL GIVE YOU A SET OF
CONCEPTS THAT ARE RELATED TO
LOWER LIMB PAIN AND YOU CAN
SCROLL THROUGH THEM.
IF WILL TELL YOU HOW MANY
STUDIES HAVE BEEN REGISTERED, IT
WILL TELL YOU WHAT COMMON DATA
ELEMENTS ARE AVAILABLE.
AS YOU GO THROUGH, YOU MIGHT SEE
THAT, WELL, KNEE ARTHRITIS IS,
IN FACT, A LOWER LIMB DISORDER.
IT RETURNS THAT TO YOU IN THAT
LIST.
THERE'S A LITTLE BUTTON UP THERE
WHICH IF YOU CLICK ON IT, IT
WILL ACTUALLY SHOW YOU THE
KNOWLEDGE GRAPH THAT SITS
UNDERNEATH AND HOW YOUR CONCEPT
RELATED TO THE THING THAT YOU
WERE LOOKING FOR, AND THEN IF
YOU, AGAIN, OPEN THIS, IT WILL
TELL YOU, HERE'S A STUDY AND
HERE'S A SET OF CDEs THAT
ACTUALLY MEASURE KNEE PAIN.
SO IT'S A VERY POWERFUL WAY OF
GOING THROUGH THIS VERY VAST
DATA NETWORK THAT HAS BEEN
ASSEMBLED BY HEAL.
SO REALLY THE POWER OF KNOWLEDGE
GRAPHS IS THAT THEY PROVIDE A
MEANS OF CONNECTING DATA THROUGH
KNOWLEDGE.
THAT KNOWLEDGE CAN COME FROM
HUMANS, THE LITERATURE, IT CAN M
COUCOME FROM ANY PLACE.
AS BIOMEDICINE REALLY MOVES
TOWARDS FAIR DESIGN PRACTICES, I
THINK THE EXCITING THING ABOUT
IT IS THERE ARE COMMUNITY
ONTOLOGIES.
THE SPARC PROJECT ITSELF
DEVELOPED A GRAPH.
BECAUSE WE'RE BUILDING FROM THE
SAME SET OF COMMUNITY
ONTOLOGIES, OUR KNOWLEDGE GRAPH
BECOMES INTEROPERABLE WITH
HEAL'S KNOWLEDGE GRAPH.
SO ONE CAN THEN START TO EXPAND
RELATIONSHIPS AMONGST THE
DIFFERENT REPOSITORIES WITH THE
TYPE OF DATA THAT -- WITH
KNOWLEDGE GRAPHS COMING FROM
OTHER GROUPS.
IF EVERYBODY USES DIFFERENT
CONCEPTS, YOU HAVE THE SAME
PROBLEM.
BUT I THINK ONE OF THE MOST
EXCITING THINGS THAT IS
HAPPENING, I'VE BEEN INVOLVED IN
KNOWLEDGE GRAPHS FOR A LONG
TIME, THEY'VE BEEN TRADITIONALLY
DIFFICULT TO BUILD, POPULATE AND
MAINTAIN, BUT I THINK WITH AI
AND MACHINE LEARNING, WE'RE
GETTING EXCITING NEW TOOLS THAT
ALLOW US TO BUILD THEM NOT ONLY
THROUGH NATURAL LANGUAGE
PROCESSING AND OTHERS BUT ALSO
TO QUERY THEM, THAT YOU'LL BE
ABLE TO ASK NATURAL LANGUAGE
QUERIES OF THESE VERY COMPLEX
STRUCTURES AND START TO RETURN
INFORMATION.
SO THAT'S JUST A WHIRLWIND TOUR
OF THE KNOWLEDGE GRAPH.
>> THANK YOU TO OUR THREE
SPEAKERS.
YOU'RE ALL WONDERFUL, YOU'RE ALL
HIRED.
GET TO THE DATA ECOSYSTEM BOOTH
RIGHT NOW TO START HELPING
PEOPLE OUT BECAUSE YOU GUYS KNOW
WHAT YOU'RE TALKING ABOUT.
THANK YOU SO MUCH.
SO WE HAVE A FEW MINUTES FOR
QUESTIONS AND ANSWERS.
AND I'M GOING TO OPEN IT UP TO
THE AUDIENCE.
THERE'S MICROPHONES ON BOTH
SIDES OF THE ROOM, THERE'S SOME
MICROPHONES SORT OF IN THE
MIDDLE.
THE BACK SECTION, LIKE RIGHT
THERE.
SO IT LOOKS LIKE NORA HAS THE
FIRST QUESTION.
TAKE IT AWAY.
>> I HAVE MANY QUESTIONS BUT I'M
ONLY GOING TO ASK ONE.
TERRIFIC PANEL, THANKS VERY MUCH
FOR DOING IT AND FOR DOING THE
HEAL DATA ECOSYSTEM.
CHARLES I'M GOING TO ASK YOU THE
QUESTION BECAUSE THIS HURTS MY
BRAIN.
WE'RE TRYING TO GENERATE THESE
DATABASES, AND WE'RE INVESTING
ON BRINGING TOGETHER AN
INITIATIVE, A NEW DATA
GENERATED -- THAT IS BEING
GENERATED AND THEN WE ENCOUNTER
THESE GIGANTIC ROAD BLOCKS WHEN
WE TRY TO ACCESS THE
ADMINISTRATIVE DATA.
SO HOW DO WE CHANGE THAT SO WE
COULD -- BECAUSE THAT
ADMINISTRATIVE DATA IS SO
EXTRAORDINARILY VALUABLE THAT
NOT BEING ABLE TO ACCESS THEM
EXCEPT ON VERY CONSTRAINED
CONDITIONS IS GG GOING TO BE A
LIMITATION.
SO WHEN WE LOOK INTO THE FUTURE,
WHAT ARE YOUR THOUGHTS?
>> WELL, THAT'S A GREAT
QUESTION, NORA.
THANK YOU.
AND NOT AN EASY ONE, AND I THINK
IF I HAD A QUICK ANSWER, I'D BE
A RICH MAN IN A SHORT PERIOD OF
TIME.
BUT I THINK U.S. HAS GOT TO GET
TO A TOKENIZED SYSTEM.
SO LOOK TENOR DICK COUNTR LOOK .
TRUE POPULATION BASED MEDICAL
DEMOGRAPHICS AND EVEN PHENOTYPIC
AND OTHER OUTCOMES, THEY CAN
COMBINE IT AND DO RETROSPECTIVE
COHORT STUDIES THAT THE U.S.
WOULD HAVE TREMENDOUS PROBLEMS
DOING.
I THINK WE'VE GOT TO THINK
BROADER ABOUT WHAT THE LONG TERM
FUTURE IS IN TERMS OF PRIVACY,
SECURITY, AND HOW WE CAN USE --
I DON'T WANT TO SAY A NATIONAL
ID, WE HAVE ONE ALREADY WITH
SOCIAL SECURITY NUMBER, BUT
BREAKING DOWN THE SILOS SO THAT
HEALTH EQUITY AND UNIQUE
POPULATIONS, THE DATA IS
AVAILABLE FOR DISCOVERY AS
OPPOSED TO REINVENTING THE WHEEL
EVERY TIME.
THAT'S REALLY EASIER SAID THAN
DONE, BUT UNTIL WE THINK MORE
FUTURE-FORWARD THINKING, WE'RE
GOING TO BE DEALING WITH THE
SAME ISSUES TIME AND TIME AGAIN.
THAT'S A GREAT QUESTION.
THANK YOU.
>> THANKS, CHARLIE.
MARYANN OR LAURA, DO YOU HAVE
ANY THOUGHTS TO ADD TO THAT?
>> I AGREE.
[LAUGHTER]
>> OKAY.
>> I THINK EVERY TIME ONE GETS
TO -- IT'S LIKE WHEN YOU'RE
HIKING AND YOU THINK YOU ONLY
HAVE TO GET TO THE TOP OF THE
NEXT PEAK BUT THEN OF COURSE
THERE'S THE BIGGER PEAK THAT'S
BEHIND IT, BUT OF COURSE IF YOU
NEVER GOT TO THAT PEAK, YOU
WOULD NEVER SEE THE PEAK BEHIND
IT.
SO I THINK DATA GOVERNANCE BOTH
NATIONALLY AND INTERNATIONALLY,
POLICY, IS THE LAST PIECE THAT
NEEDS TO BE ATTACKED AND MOST
PEOPLE AT MY LEVEL ARE LIKE,
THAT'S BEYOND MY PAY GRADE,
RIGHT?
I MEAN, THOSE ARE THE THINGS FOR
NIH AND OTHERS TO REALLY TACKLE.
>> BUT WE NEED TO TACKLE IT.
>> I WAS GOING TO SAY, NO
PRESSURE.
[LAUGHTER]
>> OKAY, MICHAEL HAS A QUESTION.
>> DR. MAZERIK AND THE PANEL,
THANK YOU SO MUCH REALLY FOR THE
VERY NIF INFORMATIVE SESSION.
ONE OF THE CENTRAL GOALS FOR --
IS TO GET NEW TREATMENTS INTO
THE HANDS OF PHYSICIANS AN
PATIENTS, AND DEVICES IN ORDER
TO JUST PROVIDE RELIEF.
THERE'S JUST SO MUCH NEED.
ONE OF THE THINGS WE'RE SEEING
IS THERE'S A TREMENDOUS AMOUNT
OF DATA BEING GENERATED ON THE
THERAPEUTICS DEVELOPMENT SIDE
INSIDE OF HEAL AND ACROSS NIH
PROGRAMS.
AND THERE'S A PERCEPTION AMONG
THOSE INDIVIDUALS DOING THE WORK
THAT THAT DATA IS, YOU KNOW, YOU
KNOW, THEY DON'T WANT TO SHARE
IT UNTIL THAT DEVICE IS ON THE
STREET, SO IT'S BEING MARKETED,
UNTIL THEY CAN BENEFIT FROM T
BUT WE REALLY SEE FROM A
PROGRAMMATIC STANDPOINT THAT
THERE IS PRECOMPETITIVE DATA IN
THOSE DATASETS.
THERE'S SOME ASPECT OF THEIR
DISCOVERY THAT COULD BE SHARED
BECAUSE IT'S NOT GOING TO DETER
FROM THE -- YOU KNOW, THE IP
THAT THEY HAVE IN THAT PRODUCT.
SO FOR THE MEMBERS OF THE PANEL,
DO YOU HAVE ANY IDEAS ABOUT HOW
TO IMPLEMENT THIS IDENTIFICATION
OF PRECOMPETITIVE DATA IN THE
THERAPEUTICS DEVELOPMENT AND THE
DEVICE DEVELOPMENT SPACE, AND
THEN HOW TO ENCOURAGE THE PIs
TO SHARE THAT DATA?
>> WE'RE ALL LOOKING AT EACH
OTHER.
>> IT'S VERY INTERESTING.
I'VE ACTUALLY HAD SOME
INTERESTING CONVERSATIONS
RECENTLY ABOUT A LOT OF
ALGORITHMS THAT ARE BEING
DEVELOPED AND HOW WE GO ABOUT
GETTING THOSE FREELY AVAILABLE
AND SHAREABLE SO THAT ARE THESE
THINGS THAT ARE COMMERCIALIZED
OR MARKETED, OR IS IT KIND OF
THE GREATER PRIORITY TO MAKE IT
SHAREABLE SO THAT WE CAN BENEFIT
FROM IT AND OTHER PROGRAMMERS
AND OTHER RESEARCH GROUPS CAN
KIND OF ITERATE AND DEVELOP
OTHER MODES.
YOU KNOW, I MEAN, I'M BIG ON
LET'S SHARE IT ALL BUT I'M ALSO
AN AK DEMINK T ACADEMIC THAT'S E
BUSINESS WORLD THAT'S NOT
LOOKING TO MONETIZE THE WORK BUT
GET IT IN THE -- TO BENEFIT
PATIENTS DIRECTLY.
YOU KNOW, I THINK IT'S THE
INCENTIVE SYSTEM, RIGHT?
IT'S THAT, YOU KNOW, IF THE
SYSTEM IS SET UP IN A WAY THAT
IT'S TO MONETIZE AND WE NEED TO
CREATE SOME INCENTIVE SYSTEM
THAT WOULD MAKE THESE OTHER
PIECES KIND OF HIGHLY MOTIVATING
TO SHARE, YOU KNOW, I'M HIGHLY
MOTIVATED TO SHARE BECAUSE OF MY
SELF-INTEREST AT HELPING PEOPLE
SUFFERING WITH PAIN.
SO I THINK WE HAVE TO DETERMINE
WHAT ARE THE MOTIVATORS FOR
THESE OTHER SYSTEMS IN ORDER TO
GET THEM ENGAGED IN THE PROCESS
OF SHARING PIECES TO ENHANCE THE
GREATER SYSTEM.
>> I THINK THERE'S ALSO
INFRASTRUCTURES AND POLICIES AND
MOUs AND OTHER THINGS THAT CAN
BE SET UP TO ACTUALLY CREATE A
PRETTY COMPETITIVE SPACE, AND I
FIND THAT THESE ARE OFTEN NOT
NEGOTIATED AHEAD OF TIME WITH
GROUPS, BUT FOR EXAMPLE, IN
SPARC, WHEN WE WERE GETTING DATA
FROM THE SPARC PROGRAM, THERE
WAS A SHARED SPACE THAT
EVERYBODY HAD ACCESS TO.
THERE WAS ALSO AN AGREEMENT THAT
THINGS WOULD BE PUBLISHED IN A
CERTAIN TIME FRAME AND BEFORE
THAT, PEOPLE HAD ACCESS TO IT,
BUT UNDER A STRICT MOU AS TO HOW
IT WAS THAT YOU WERE ALLOWED TO
USE IT.
A COUPLE OF OUR OTHER PLATFORMS,
OPEN DATA COMMONS, ARE SET UP IN
THE SAME WAY.
SO I AGREE WITH YOU, LAURA, IT
SHOULD ALL BE AS OPEN AS
POSSIBLE, DISCLOSED AS
NECESSARY, BUT IN THE ABSENCE OF
THAT AND RECOGNITION OF OUR
CURRENT INCENTIVE SYSTEM, AND
THAT COMMERCIALIZATION IS PART
OF THAT -- THE GOALS THAT MAKING
SURE THAT THERE ARE HEAL-WIDE
POLICIES, DATA USE POLICIES IN
PLACE THAT EVERYBODY UNDERSTANDS
FROM THE BEGINNING.
AND I THINK EVERY NOW AND THEN,
YOU HEAR FA PHARMA SETTING UP
PRECOMPETITIVE SPACES, IT'S
QUITE CLEAR WHAT YOU'RE ALLOWED
TO DO AND NOT ALLOWED TO DO WITH
THAT DATA, BUT THAT'S ANOTHER
SORT OF AN OPTION, I THINK.
>> NO EASY QUESTIONS FOR THIS
PANEL.
>> NO.
>> THANK YOU, MICHAEL.
>> OH, OKAY.
SO I CAN DO ONE MORE QUESTION.
SO IF YOU WANT TO COME UP AND
TALK TO US AFTER, THAT WOULD BE
FANTASTIC.
WE CAN HANG OUT FOR A MINUTE.
BUT GO AHEAD, I THINK WERE YOU
UP AT THE MICROPHONE FIRST.
>> THANK SO MUCH, BRIAN,
PHYSICIAN SCIENTIST FROM BOSTON.
I REALLY APPLAUD THESE EFFORTS,
I FEEL LIKE THEY'RE THE ONLY WAY
FORWARD TO -- CAPTURE DATA IN
LARGE POPULATIONS.
IN MY TREATING CAPACITY, I'M
JUST U FRUSTRATED BY HOW LITTLE
DATA WE CAPTURE AND I'M
WONDERING, IS THERE A WAY TO
EXPAND THESE EFFORTS TO HAVE,
FOR EXAMPLE, CAPTURING DATA AND
THE USE OF DATA AS PART OF
CLINICAL REIMBURSEMENT, OR IS
THERE SOME WAY TO REALLY DRIVE
TREATING PHYSICIANS TO PROVIDE
DATA THAT THEN CAN BE USED SO
THAT OUR ANALYSES OF INVENTIONS
WHERE YOU HAVE A MILLION
EPIDURAL STEROID INJECTIONS DONE
PER YEAR BUT REALLY SMALL
STUDIES DOCUMENTING THEIR
EFFICACY, THOSE SITUATIONS CAN
BE IMPROVED.
>> I AGREE.
UM, I WOULDN'T BE SITTING HERE
IF I WASN'T A BIG FAN OF DATA
COLLECTION AND STANDARDIZATION.
I THINK THAT THERE'S SO MANY
CHALLENGES WITH GETTING -- I
FEEL LIKE THERE'S BEEN YEARS AND
YEARS WHERE PEOPLE HAVE TRIED TO
INTEGRATE PROs INTO PRACTICE
AND EVEN INTO EVALUATION OF
CLINICIAN OUTCOMES, AND I WANT
TO ALMOST FLIP IT A ILL WILL BIT
AND SAY, LIKE, MAYBE THE WAY TO
GET THE CHANGE IS MORE
ENGAGEMENT IN THE INDIVIDUALS'
LIVED EXPERIENCE AND WHAT THEIR
EXPERIENCE IS IN GETTING --
FILLING OUT THOSE
QUESTIONNAIRES, GETTING THESE
MEASURES, GETTING QUANTIFIABLE
OUTCOMES, BECAUSE WHEN THEY COME
IN, THERE'S SO MUCH AMBIGUITY
REGARDING HOW MUCH THIS
PARTICULAR INJECTION OR
TREATMENT IS GOING TO WORK FOR
THEIR PARTICULAR PAIN PROBLEM.
SO I WONDER IF PART OF THE WAY
THAT WE CAN SHIFT THE PROCESS IS
BY ENGAGING MORE WITH
INDIVIDUALS WITH LIVED
EXPERIENCE TO GET THEIR TAKE ON
HOW IMPORTANT IT IS TO THEM TO
HAVE THIS, AND MAYBE THAT WOULD
SHIFT THE CONVERSATION AND GET
PEOPLE MORE MOTIVATED TO CHANGE.
>> OKAY.
I THINK IT'S TIME FOR LUNCH.
TAMARA IS TELLING US TO WRAP UP.
SO COME SEE US AT THE BOOTH.
WE'LL BE THERE TO ANSWER
QUESTIONS.
THANK YOU ALL FOR YOUR
ATTENTION.
>> SO THANKS TO JESS AND ALL THE
PANELISTS.
THAT WAS A GREAT PRESENTATION.
I THINK THIS MORNING WE'VE ALL
ENJOYED LEARNING MORE ABOUT
RELATIONSHIP INFRASTRUCTURE AND
DATA INFRASTRUCTURE.
WE ARE NOW GOING TO BREAK FOR
LUNCH FOR AN HOUR AND A HALF.
LUNCH IS ON YOUR OWN.
THERE'S A GRAB AND GO OPTION IN
THE FOYER.
THERE'S ALSO THE HOTEL
RESTAURANT AND OTHER RESTAURANTS
WITHIN WALKING DISTANCE AT PIKE
AND ROSE.
JUST IF YOU REGISTERED FOR THE
LIVED AND LIVING EXPERIENCE
COMMUNITY NETWORKING SESSION,
PLEASE HEAD DOWN TO THE GLEN
ECHO ROOM.
THIS IS IN THE LOWER LEVEL.
AND IF YOU ORDERED LUNCH, IT
WILL BE DELIVERED TO YOU THERE.
WE'LL RECONVENE BACK AT 1:30 FOR
AFTERNOON PLENARY, AND IF YOU
HAVE ANY QUESTIONS, JUST SEE THE
REGISTRATION DESK. 3804 02:02:55,701 SO ENJOY YOUR LUNCH.