>> GOOD AFTERNOON, EVERYBODY,
AMOLOL KATHRYN GORDON THE NICHD
DIRECTOR AND I IT'S GREAT TO SEE
AN IN-PERSON CROWD AND WELCOME
EVERYBODY ONLINE.
TODAY WE ARE A SPECIAL TREAT
DR. PATIENCE WHITE FROM GEORGE
WASHINGTON AND I WILL GO THROUGH
A FEW LOGISTICS BEFORE WE GET
STARTED.
SO FIRST OF ALL, THE HOPKINS
CLOUD CME ACTIVITY CODE IS
57872.
AGAIN, 57872.
THREEZ TEXT THIS CODE TO THE
JOHNS ON HOPKINS CME CODE THAT'S
ON OUR SLIDE, IF OUR AV TEAM CAN
GET US TO THAT NUMBER, THERE YOU
GO.
PERFECT.
THAT WAY YOU CAN RECEIVE CREDIT.
WE KINDLY REQUEST YOU PROVIDE
FEEDBACK FROM THE LECTURE SHOWN
ON THE SLIDE, THOSE APPLYING FOR
CME, YOU WILL RECEIVE A CME LINK
VIA E-MAIL AND THE SURVEY WILL
BE USED TO PROVIDE US WITH
IMPORTANT FEEDBACK AND I KNOW I
SPEAK FOR OUR LECTURER, WE
WELCOME THE FEEDBACK ESPECIALLY
ON THIS TOPIC.
SO FOLLOWING THE PRESENTATION,
QUESTIONS FOR THE SPEAKER, THE
SPEAKERS, I HAVE A FEW SLIDES AT
THE END WILL BE TAKEN BY THE
MICROEN FOCUSED ONS IN THE
AISLES HERE--MICROPHONES IN THE
AISLES HERE.
AT THE END, FEEL FREE TO TYPE
THOSE IN, WE WILL SEE THOSE AND
THOSE WILL BE READ, AND WE WILL
AS TIME PERMITS WE WILL TRY TO
GET TO ALL OF THEM.
SO NOW, IT'S MY PLEASURE AND
PRIVILEGE REALLY, TRUE HONOR TO
BRUCE DR. PATIENCE WHITE WHO'S A
THOUGHT LEADER IN THE AREA OF
HEALTHCARE TRANSITION WHO'S
ARTICLES I HAVE READ FOR MANY
YEARS, AND IT'S A REAL PLEASURE
TO HAVE HER HERE IN PERSON, SHE
IS PROFESSOR EMERITUS IN
MEDICINE AND PEDIATRICS AT
GEORGE WASHINGTON THE UNIVERSITY
SCHOOL OF MEDICINE AND HEALTH
SCIENCES.
SHE'S CO DIRECTOR OF THE
NATIONAL GUT TRANSITION, IT'S A
NATIONAL TRUSTEES FOR HEALTHCARE
TRANSITION IN WASHINGTON D. C.
DR. WHITE EARNED HER MEDICAL
DEGREE FROM HARVARD MED SCHOOL
AND HER MASTERS IN EDUCATION
FROM GEORGE WASHINGTON,
COMPLETED HER RESIDENCY IN
MEDICINE AND FELLOWSHIP IN
RHEUMATOLOGY AT HARVARD AND THEN
THROUGHOUT HER CAREER, SHE'S
BEEN ACTIVE IN ACADEMIC
MEDICINE, CLINICAL CARE,
RESEARCH AND PUBLIC POLICY.
SHE SERVED AS A DIVISION
DIRECTOR OF AN ADULT AND
PEDIATRIC RHEUMATOLOGY AS WELL
AS SOCIALITY DEAN OF FACULTY
AFFAIRS AT GEORGE WASHINGTON
SCHOOL OF MEDICINE HEALTH
SCIENCES.
SO TODAY SHE AGAIN IS CO
DIRECTOR OF THE NATIONAL
ORGANIZATION GUT TRANSITION
WHICH IS A FEDERALLY FUNDED
PROGRAM THROUGH THE NATIONAL
ALLIANCE TO ADVANCE ADOLESCENT
HEALTH. AND IT FOCUSES ON THE
DIFFICULT TRANSITION FROM
PEDIATRIC TO ADULT HEALTHCARE
AND IN HER DAY-TO-DAY
RESPONSIBILITIES SHE ADVISES
MANY OF US, PROVOIDS HEALTHCARE
SUPPORT FOR PROVIDERS AND
NETWORKS THAT IS A SUPPORT THEIR
PATIENTS AND FAMILIES AS THEY
CHANGE AND PROGRESS TO ADULT
CARE.
SHE'S A PASSIONATE EDUCATOR AS
YOU WILL SEE, A MENTOR OF
MEDICAL STUDENTS, OF OLDER
STUDENTS AND SCIENTISTS, SHE'S
REALLY DEVOTED HER CAREER TO
HELPING ALL OF US AND TRYING TO
IMPROVE HEALTHCARE
ACCESSIBILITY.
SINCE 2010, SHE'S BEEN THE LEAD
AUTHOR ON THE 2023 REAFFIRMATION
OF THE AMERICAN ACADEMY OF
PEDIATRICS, AMERICAN ACADEMY OF
FAMILY PRACTICE, AMERICAN
COLLEGE OF PHYSICIANS, JOINTS
ACP STATEMENT, SUPPORTING THE
HEALTHCARE TRANSEGZ FROM
ADOLESCENT TO ADULTHOOD IN THE
HOME AND DEVELOPED THE
NATIONALLY RECOGNIZED 6 CORE
ELEMENTS OF TRANSITION AND
THERE'S AN IMPRESSIVE PAPER
ONLINE.
SHE'S AN INCREDIBLE RECIPIENT,
TUTOR, AND TEACH ARE OF MANY
NUMEROUS ASHES WARDS.
ASK BEFORE SHE STARTS I ASKED
HER TO ADD ON HOW SHE GOT HERE
AND I THOUGHT IT ESPECIALLY FOR
TRAINEES AND YOUNG RESEARCHERS
IN THE AUDIENCE TO IT WILL BE
INTERESTING FOR YOU TO HEAR A
TINY BIT ABOUT HER PERSONAL
STORY.
SO WITHOUT FURTHER ADO, THANK
YOU PATIENCE.
[ APPLAUSE ]
>> THANK YOU DR. GORDON.
IT'S A REAL PRIVILEGE FOR ME TO
BE HERE AND I'M EXCITED THAT YOU
ARE ALL THINK BEING THIS AS AN
ISSUE.
IT'S BEEN PART OF MY LIFE FOR
MANY, MANY YEARS AND I WILL TELL
YOU JUST BRIEFLY BECAUSE MANY
PEOPLE SAY HOW DID YOU GET INTO
THIS ANYWAY IS SORT OF THETHINKW
AS A CLINICIAN AND TEACHER ARE
VERY DIFFERENT WHEN YOU'RE IN
THE PEDIATRIC SETTING VERSUS--ON
LOOKING AT THAT QUESTION AND IN
1980 I PUT MY FIRST ABSTRACT
TOGETHER, I WAS MENTIONING THIS
MORNING SO THAT TELLS YOU HOW
LONG I'VE BEEN INVESTED IN THIS
AS AN AREA, THE OTHER THYME TIME
THAT WAS CRUCIAL IN ALL THIS, I
WENT THROUGH CAREER AND CAN A
LOT OF RESEARCH AND OTHER
THINGS, ALWAYS VOLUNTEERING TO
WORK AROUND IN THE AREA OF
HEALTHCARE TRANSITION, I HAD A
FEW IMRANTS FROM THE BUREAU OF
MATERNAL AND CHILD HEALTH THAT
ALLOWED ME TO CONTINUE THAT.
THE OTHER AREA, BESIDES
EDUCATION IS I'M VERY INTERESTED
IN ADVOCACY, THAT MAKES SENSE.
I WILL ADVOCATE FOR YOUNG ADULTS
AND THOSE KINDS OF THINGS, SO I
SUDDENLY FOUND MYSELF LUCKILY
ENOUGH TO BE A ROBERT WOOD
JOHNSON HEALTH POLICY FELLOW.
I WORKED ON CAPITAL HILL FOR 2
YEARS IN THE ANTIFINANCE
COMMITTEE RIGHT WHEN PART D WAS
GOING THROUGH AND THE CHANGES IN
MEDICAID, I WAS VERY INTERESTED
IN MEDICAID.
AND I WAS UP THERE IN CAPITOL
HILL KNOWLEDGING WELL, I GUESS
MY HELT CARE TRANSITION YEARS
ARE YOU KNOW STILL--I'M SLUGGING
ALONG THROUGH THIS AND ALONG
CAME THE REPORT TO ERR IS HUMAN.
IT REVOLUTIONIZED THE THINKING
AND HEALTHCARE DELIVERY SYSTEM
AND STARTED TALKING ABOUT
QUALITY AND I LISTENED HARD AND
THEN BEGAN TALKING ABOUT
HEALTHCARE TRANSITION AS A
QUALITY ISSUE AND IT'S TAKEN OFF
EVER SINCE.
SO LEARNING CLEARLY HOW TO
COMMUNICATE WHAT YOU'RE DOING TO
THE AUDIENCE, YOU'RE TALKING TO,
MATTERS GREATLY AND I LEARNED
THAT, THAT WAS SORT OF LIFE
HAPPENS.
I WAS ON CAPITOL HILL DOING
SOMETHING ELSE AND IT TRANSFORM
THE FIELD I WAS ALWAYS
INTERESTED IN BUT COULDN'T WORK
IN AND JUMPING THROUGH THE WIDE
OPEN WIND O AND SAYING OKAY, I
WILL DO THIS, I WILL DO THIS AS
A FULL-TIME CAREER AND I COULD
BECAUSE IT NOW CHANGED THE
PLAYING FIELD EMPLOY SO THOSE
ARE THE 2 THOUGHTS.
YOU CAN SEE WHY I'M HERE HAVING
DONE THAT OVER MY CAREER.
SO TODAY WE WILL TALK ABOUT THE
AGE GROUP, DO YOU REMEMBER BEING
18, 19, WHAT YOU WERE DOING
DURING THAT TIME?
THINK THROUGH THAT A LITTLE BIT
AND DID ANYBODY HELP YOU FROM
MOVING A PEDIATRICIAN TO AN
INTERNIST, I ASK YOU?
THEN WE WILL DISCUSS THE KEY
ISSUES HERE, OUTCOME EVIDENCE
AND CLINICAL RECOMMENDATIONS
HERE.
WE DEVELOPED THESE OVER THE
YEARS WITH LOTS OF SUPPORT, I
STAND HERE ON THE SHOULDERS OF
MANY PEOPLE, PARTICULARLY THE
MANY PATIENTS AND FAMILIES THAT
HELPED US THINK THROUGH THIS
ISSUE.
I WANT TO GIVE YOU 2 CONCEPTS
AROUND WHO HAS DONE THIS, HAS
ACTUALLY PUT HEALTHCARE
TRANSITION FROM RESEARCH
STANDPOINT IN SICKLE CELL DEC
AND THEN AT CHILDREN'S HOSPITAL
HAS BEEN DOING THIS AND THEN I
WILL TURN IT OVER TO DR. GORDON
TO TALK ABOUT THE PROCESS, I'M
VERY EXCITED ABOUT HERE AT NIH.
SO WHAT IS IT JUST SO WE GET ON
THE SAME PAGE HERE?
IT'S REALLY A PROCESS.
IT'S VERY IMPORTANT, THAT'S
MOVING FROM A CHILD TO AN ADULT
MODEL OF HEALTHCARE.
NOW YOU MAY CHANGE YOUR
CLINICIAN OR I MAY NOT IN THAT
PROCESS, BUT THAT CONCEPT OF
GOING FROM A CHILD TO AN ADULT
MODEL OF CARE IS VERY IMPORTANT.
IT'S SORT OF LIKE, BEING IN
SCHOOL AND THEN BEING ON THE
JOB.
THESE ARE VERY DIFFERENT
EXPERIENCES AS YOU'RE GROWING UP
AND THEN WHAT ARE THE GOALS.
I THINK IT WOULD ALL ADPREE AND
VERY INVOLVED IN MANAGING OR
HEALTH KNOWING THEIR OWN
MEDICATIONS BUT IF YOU DON'T
KNOW HOW TO USE THE SYSTEM WELL,
NO MATTER HOW WELL THEY KNOW
ABOUT THEIR DISEASE, THEY WILL
NOT BE ABLE TO SURVIVE IN OUR
COUNTRY IN PARTICULAR I WOULD
SAY AND THEN YOU WANT ORGANIZED
CLINICAL PROCESS, THAT REALLY
HELPS PRACTICES TO REALLY DO THE
WORK OF TRANSITION, SO
TRANSITION IS NOT TRANSFER AND I
THINK THAT'S WHAT MOST PEOPLE
THINK ABOUT HERE, SO TRANSITION
IS PLANNING TRANSFER AND
INTEGRATION INTO THE NEW SYSTEM,
NOW IT MAY ALL HAPPEN IN 1
SYSTEM BUT ALL OF THOSE STEPS,
THIS IS REALLY BASED ON A HUGE
AMOUNT OF TRANSITION LITERATURE
AND SOCIAL MODEL ANDS SO FORTH
SO I WANT TO PUT YOU INTO A
PLANE AND MAKE THE ANALOGY TO
HEALTHCARE TRANSITION.
YOU KNOW YOU'VE ALL BEEN ON
PLANES RECENTLY, YOU GO DUN A
VERY LONG RUNWAY, AND YOU TAKE
OFF, YOU'RE IN THE AIR, IT'S
BUMPY, ACTUALLY, OFTEN,
PARTICULARLY NOW WITH GLOBAL
WARMING AND THEN YOU LAND AND GO
DOWN ALONG RUNWAY.
SO THAT FIRST RUNWAY IS THE
PLANNING PROCESS, UP IN THE AIR,
IS YOUR TRANSFER PROCESS, AND
THEN THAT LONG RUNWAY AFTER, THE
POINT BEING THAT EVERYBODY HAS
SOMETHING TO DO HERE.
NOBODY FINISHES THE JOB
ACTUALLY, WE'RE ALL WORKING
TOGETHER UNTIL YOU GET OFF THE
PLANE.
I DON'T KNOW WHAT THAT ANALOGY
IS, I DON'T KNOW.
BUT I OFTEN CAN PILOTS, WHAT IS
THE MOST DIFFICULT OR PERHAPS
SCARY, THOUGH I NEVER SAID SCARY
BECAUSE I WAS TOO SCARED TO ASK
AND THEY SAID IT'S THE LANDING.
AND THAT'S MY POINT.
EVERYBODY'S GOING TO FOCUS ON
THIS YOUNG PERSON'S ABILITY TO
LAND IN THE ADULT ENVIRONMENT
AND SURVIVE AND DO WELL AND SO,
AS YOU'RE THINK BEING THAT
PROCESS, THINK ABOUT THAT AS
YOUR SORT OF GOAL.
--I'M LOOKING FROM 12-26 AND
ABOUT 4.1 MILLION TURN 18 THIS
YEAR AND YOU HAVE A LOT OF THEM
IN YOUR SYSTEM.
AND ABOUT 25-35% HAVE CHRONIC
CONDITIONS.
PEOPLE ARE ALWAYS CHOKED AT
THAT, IT'S VERY HIGH IN THE
YOUNG ADULT ENVIRONMENT AND WHY
IS THAT MENTAL HEALTH ISSUES
BEGIN TO SUPPLANT MANY OF THE
OTHER ISSUES THAT ARE GOING ON
IN CHILDHOOD AND YOU CAN SEE, A
LESSER NUMBER HAVE FUNCTIONAL
LIMITATIONS.
I JUST WANT TO BRIEFLY MENTION
THAT ACTUALLY, YOUNG PEOPLE FACE
LOTS OF TRANSITIONS HERE AND YOU
KNOW THAT, YOU KNOW, THEY'RE
BECOMING YOUNG ADULTS, THEY'RE
DOING ALL THE THINGS YOUR
PARENTS WISH YOU DIDN'T DO, BUT
I THINK WE ALSO THINK ABOUT WHAT
HAPPENS ABOUT THE SERVICES AS
THEY AGE OUT IN THE PEDIATRIC
ENVIRONMENT.
YOU ALL HAVE THE LUXURY OF
CARING FOR PEOPLE OVER THE AGE
RAINCHL AND NOT HAVE TO WORRY
ABOUT THESE THINGS, BUT ACTUALLY
THE ROLE THAT MEDICAID, SOCIAL
SECURITY, TITLE 5 PLAY HERE IS
POWERFUL AND KNOWING WHETHER
THEY ARE AN SSI RECIPIENT AND
HELPING THEM KNOW THAT AT AGE
1850% OF YOUNG PEOPLE LOSE
SOCIAL SECURITY AND THEREFORE
LOSE MEDICAID.
SO THINKING ABOUT THAT IS A
REALLY IMPORTANT PIECE HERE.
SO HERE'S THE PARENTS VIEW OF
WHAT GOES ON IN TRANSITION.
I ALWAYS FIND IT SORT OF
AMUSING.
THE QUESTION IS PREPEAR TO
TRANSFER AND WHERE THEY'RE
GOING, NOBODY KNOWS.
NOW I HATE TO THINK OF IT THAT
WAY AND WE'RE WORKING VERY HARD
TO CHANGE THAT VISION, BUT I
THINK IT'S--WHENEVER I SHOW THAT
PARENTS JUST NOD AND SAY, YEP,
THAT'S IT.
SO HOW ARE WE DOING?
WE ACTUALLY CHECK-IN EVERY YEAR
THROUGH THE NATIONAL SURVEY OF
CHILDREN'S HEALTH EMPLOY THEY
HAVE MANY QUESTIONS AROUND LOTS
OF AREAS BUT YOU CAN SEE ON THE
RIGHT SIDE OF THIS SLIDE, WHAT
YOUR GENERALLY ASKING, THIS IS
OF PARENTS, OF 12-17 YEAR-OLDS,
THAT'S WHAT THIS NATIONAL SURVEY
IS AND THEIR TIME ALONE ACTIVELY
WORKING TO HELP GAIN SELF-CARE
SKILLS AND DISCUSS THE SHIFT OF
THE ADULT PROVIDER.
NOW SADLY, BUT ACTUALLY, A VERY
POSITIVE THING, WE HAVE A LOT TO
WORK ON.
YOU CAN SEE HERE THE MOST RECENT
DATA IN 2022 SAY 23 OF YOUTH
RECEIVE SPECIAL HEALTHCARE NEEDS
RECEIVE GUIDANCE FROM THE
PARENT'S POINT OF VIEW UNLESS
THOSE THAT DIDN'T HAVE IT.
SO THE MAJORITY OF THE PEOPLE
OUT THERE ARE NOT RECEIVING WHAT
YOU'RE ABOUT TO EMBARK ON, AND I
THINK IT'S REALLY VERY EXCITING
FOR THE MODEL FOR THE REST OF
THE COUNTRY.
THERE ARE A LOT OF QUALITY AND
SAFETY ISSUES, THIS HAS BEEN
DOCUMENTED FOR YEARS IN THE
LITERATURE AND MOST RECENTLY IN
PARTICULAR CERTAIN DISEASES,
SICKLE CELL DISEASE, EPILEPSY,
THE DEATH RATES GO UP
CONSIDERABLY DURING THIS TIME,
SO WE'RE TRYING TO REALLY THINK
ABOUT SOME OF THESE ISSUES, WE
ALL KNOW THAT TEENAGERS DON'T
WANT TO DO WHAT YOU ASK THEM TO
DO, AND SO MEDICATION ADHERENCE,
ADHERENCE TO MEDICAL PROTOCOLS,
WHATEVER IT IS, THERE'S A
CERTAIN BACKGROUND ABOUT BEING A
TEENAGER.
THERE'S A LOT OF DISSATISFACTION
AROUND THIS TIME IN THE MEDICAL
DELIVERY SYSTEM.
IT'S THE #1 COMPLAINT IN KAISER
IS YOUNG ADULTS AND HOW THEY'RE
HANDLED.
THIS WAS THE BIG SYSTEM TO COME
UP US NATIONALLY AND WORK ON
THIS ISSUE.
COMMUNICATION IN THE HEALTHCARE
DELIVERY IS A LOT OF ISSUES--HAS
A LOT OF ISSUES PARTICULARLY
BETWEEN THE PEDIATRIC AND ADULT
HEALTHCARE DELIVERY SYSTEMS AND
WE'VE KICKOFFS PLAY A BIG ROLE
HERE AND AS YOU KNOW WE TEND TO
FOCUS ON COST PERHAPS OUTSIDE
THE NIH IN THIS ISSUE.
SO, NOW--SO WHAT'S THE EVIDENCE?
, YOU KNOW, REALLY DO YOU NEED
TO DO THIS?
AND THERE'S A LOT OF EVIDENT OUT
THERE NOW, THERE'S A SYSTEMATIC
REVIEW, LOOKING AT IT FROM THE
POINT OF VIEW OF THE TRIPLE AIM
BUT I WILL SHOW YOU EVIDENCE FOR
THE QUADRUPLE AIM, SO THERE'S
STATISTICALLY SIGNIFICANT
IMPROVEMENT IN POPULATION OF
HEALTHNESS EXPERIENCE OF CARE
FOR YOUTH AND FAMILIES AND
UTILIZATION, SO THAT DATA IS OUT
THERE AND IT'S BECAUSE AS A
STANDARDIZED PROCESS, THAT'S
WHAT'S THE BACKGROUND HERE, IS
THAT THERE'S A PROCESS THAT
EVERYBODY FOLLOWS AND YOU GET
BETTER OUTCOME, THAT KIND OF
STRUCTURE.
SO THIS IS A CLINICIAN
EXPERIENCE SURVEY AND 6 SYSTEMS
WHERE WE'RE ASKING GHEE WHIZ, DO
YOU LIKE THAT YOU DID THIS,
THAT'S THE QUEST FROM THE
HEALTHCARE DELIVERY SYSTEM, HOW
WILL I GET THESE PROVIDERS TO DO
IT EMPLOY PROVIDER OR CLINICIAN,
USED BROADLY WHETHER IT'S
NURSES, SOCIAL WORKERS, WHOEVER
IT IS IN THE SYSTEM AND YOU CAN
SEE HERE, WE INVOLVED AN
EVIDENCE-BASED SURVEY AND WE
ASKED--WE GOT A RECENT RESPONSE
RATE, I THOUGHT 31% FROM
CLINICIAN WAS SORT OF
OVERWHELMING, BUT YOU CAN SEE
HERE, THAT THEY THOUGHT A
HEALTHCARE TRANSITION PROCESS
IMPROVES PATIENT EXPERIENCE AND
CLINICIAN EXPERIENCE, I WAS ASH
MAZED ACTUALLY AT THE HIGH
PERCENTAGES THAT WE FOUND HERE.
SO NOW HAVE YOU QUADRUPLE AIM,
REALLY, RESULTS HERE FROM DOING
A PROCESS.
THESE WERE 6 SYSTEMS THAT WERE
IN VERY DIFFERENT PROCESSES, AND
INCORPORATING A STRUCTURED
PROCESS, ALL OF THEM WERE USING
A COMPONENT OF THE 6 CORE
ELEMENTS.
SO SHE MENTIONED THE CLINICAL
REPORT.
THIS HAS BEEN THE WORKS FOR
YEARS, 2011 IS WHEN WE FIRST
CAME TOGETHER AND BEGAN TO TALK
ABOUT HEALTHCARE TRANSITION, IN
2018, WE UPDATED THIS AND VERY
CLEARLY HAD A TARGET OF ALL
YOUTH WITH AN ALGORITHM
STRUCTURE FOR YOUTH WITH SPECIAL
HEALTHCARE NEED ANDS IT COULD
APPLY ACROSS PRIMARY OR
SPECIALTY PRACTICES OR SYSTEMS
HERE AND WE HAD AT THE TABLE
PARENT, YOUTH, NURSING, SOCIAL,
WORK, CLINICIANS FROM ALL THESE
DIFFERENT MEDICAL ASSOCIATIONS
AND DEVELOPED THIS TIMELINE AND
PEOPLE ALWAYS WERE ARGUING,
SHOULD IT BE DEVELOPMENTAL SORT
OF SITUATION THAT MOVES THINGS
ALONG OR SHOULD IT BE AGE?
IT WAS THE PARENTS THAT WERE
CLEAR.
THE COUNTRY'S BUILT ON AGE 18,
BECOMING AN ADULT AND YOU WANT
TO BE SURE YOU'RE AIM THAGOREAN
AND GIVING YOUNG PEOPLE A FAIR
SHOT AT KNOWING THE BALL GAME
THAT'S GOING TO HAPPEN WHEN THEY
TURN 18 HERE.
WE UPDATED IN 2023, SO IT HAS
ALL SORTS OF UPDATED EVIDENCE
AND OTHER THINGS AND CLEARLY, BY
THIS TIME, MOST PEOPLE WERE
BEGINNING TO USE A STRUCTURED
PROCESS THAT WE'RE PUBLISHING
AND USING THE 3 COMPONENTS IN
TRANSITION AND USING QUALITY
IMPROVEMENT APPROACH THAT SEEMED
TO GET THE MOST OUTCOME AND THE
BEST OUTCOME WHEN THEY WERE
DOING THAT EMPLOY .
SO WHAT IS THE 6 CORE ELEMENTS,
I WANT TO BE CLEAR IT'S JUST A
MODEL.
IT'S A ROADMAP FOR A PROCESS,
WHICH YOU WILL TAKE IT IF YOU
WANT IT, DO WITH IT, CUSTOMIZE
IT, THAT'S WHAT PEOPLE DO ALL
OVER THE WORLD AND USING THIS
BACKBONE APPROACH, IT HAS BEEN
TESTED IN QUALITY IMPROVEMENT
LEARNING COLLABORATIVES.
IT'S MEANT TO BE CUSTOMIZED
EMPLOY YOU CUSTOMIZE IT
ACCORDING TO THE COMPLEXITY,
BOTH SOCIAL AND MEDICAL
COMPLEXITY THAT YOU'RE DEALING
WITH AS YOU DO.
AND THAT INTENSITY VARIES,
GREATLY.
IT WILL VARY EACH INTUITY.
IT VARIES ACROSS ALL THE SYSTEMS
THAT I WORK WITH AND IT'S BEEN
NOW APPLIED EVERYWHERE, AT
SCHOOL BASED HEALTH CENTERS,
MENTAL HEALTH, ACROSS MULTIPLE
DIFFERENT SYSTEMS, SO, YOU'RE
HAPPY TO GO TO OUR WEBSITE, AND
DOWNLOAD A LOT OF THESE PAPERS
IF YOU WANT TO, BUT IT'S REALLY
BEEN USED NOW A LOT.
THIS IS OUR WEBSITE, IT GIVES
YOU 3 PACKAGES AND WHAT YOU CAN
DRAW FROM.
SO THERE'S 1 ABOUT YOUNG PEOPLE
LEAVING A PEDIATRICIAN, 1 WHERE
THEY WILL STAY WITH SOMEBODY
THAT TAKES CARE OF THEM OVER THE
LIFE SPAN AND THEN 1 EPITHELIAL
GREATING YOUNG ADULTS INTO ADULT
CARE.
SO IT VARIES WHO YOU ARE AND
WHAT THE YOUNG PERSON IS DOING.
YOU CAN SEE, YOU CAN GET THE
FULL ELEMENTS PACKAGE.
YOU CAN GET IT IN SPANISH, AND
THEREY A FULL IMPLEMENTATION
PACKAGE ASSOCIATE WIDE EACH TO
MAKE THIS EASIER FOR PEOPLE.
SO PEOPLE SAY WELL, WHAT'S MY
ROLE IN THIS PROCESS?
THIS IS A BUSY SLIDE, WE'LL
FOCUS ON THE PEDIATRIC 1 FOR THE
MOMENT HERE, BUT CLEARLY THERE
ARE CORE ELEMENTS ACROSS BOTH
PEDIATRIC AND ADULT.
ADULT SYSTEMS OFTEN SAY, WELL,
JUST FOR--PREPARE THEM AND SEND
THEM TO US NO, NO, NO, THEY HAVE
A LOT THEY HAVE TO DO JUST AS
MUCH AS PEDIATRIC, THOUGH THEY
THINK THEY ARE DOING MORE IN
EVERY SYSTEM I WORK WITH, SO
LET'S JUST QUICKLY THINK ABOUT
THEM HERE.
THIS IS A GENERIC ROADMAP, YOU
WANT TO TELL PEOPLE WHAT YOU'RE
DOING.
THAT'S WHAT THE POLICY IS.
YOU WANT TO TRACK THAT WHAT YOU
SAID YOU WERE GOING TO DO, YOU
ACTUALLY DID AND THIS IS NOTHING
NEW, YOU WANT TO ASSESS THE
SELF-CARE SKILLS, OFFER
EDUCATION, THAT'S READINESS, YOU
WANT TO MAKE A PLAN, SO
EVERYBODY, YOU KNOW YOU WANT TO
SHARE DECISION MAKING, WHATEVER
IT IS, YOU'RE GOING TO DO, YOU
WANT TO BE SURE IT'S WITH
FAMILIES, AND YOUTH, THEN THAT
MOMENT OF TRUTH WHETHER YOU HAVE
A WARM HANDOFF WHICH IS THE
CLASSIC THING BETWEEN THE 2
SYSTEMS OR BETWEEN WHATEVER
YOU'RE BRIDGING A GAP AND THEN
YOU WANT TO ASK, DID I DO A GOOD
JOB?
DID I MEET THE NEEDS OF THE
FAMILIES AND THE SYSTEM THAT I'M
WORKING IN.
SO JUST SO YOU SORT OF THINK
ABOUT WHAT THESE ARE, SO THE
WELCOME OR POLICY CARE GUIDE,
HOWEVER YOU WANT TO DO IT IS
FORMALIZING YOUR APPROACH,
THAT'S THE HARDEST STEP.
EVERYBODY NEEDS TO AGREE FOR
CERTAIN THINGS AND WORKING
TOGETHER TO PULL THAT TOGETHER
SO HAVE YOU A UNIFIED MESSAGE TO
FAMILIES IN YOUTH, FAMILIES FEEL
IT'S VERY HARD IF THEY'RE SEEING
MULTIPLE PROVIDERS IN A SYSTEM,
AND 1 SAYS YOU'RE OUTA HERE AT
18, THE NEXT SAYS YOU NEVER HAVE
TO LEAVE.
AND THEN THEY FIND THEMSELVES
BRIDGING 2 DIFFERENT HUGE
SYSTEMS AND WITH A SYMPTOM
THEY'RE NOT SURE WHERE TO GO.
AND THAT'S WHERE THE MEDICAL
LIABILITY LIES.
THEY NEED TO KNOW WHAT TO DO,
WHO'S MANAGING AND CLEARLY LEAVE
1 SYSTEM FOR ANOTHER.
TRACKING AND MONITORING IS
PRETTY STRAIGHT FORWARD, THERE
ARE MANY WAYS TO DO IT.
YOU HAVE AN EMR, MOST PEOPLE DO
IT THROUGH THAT.
THE READINESS ASSESSMENTS,
PEOPLE LOVE THESE, PEOPLE FOCUS
ON THEM BUT I THINK YOU HAVE TO
THINK THROUGH THAT THEY ARE NOT
EVIDENCE BASED, YOU CAN'T SAY
YOU CORE A HUNDRED AND YOU'RE AN
ADULT, RIGHT?
THAT JUST DOESN'T COMPUTE.
SO THEY'RE A DISCUSSION TOOL.
YOU WANT TO USE IT TO GUIDE YOU
AND HELPING YOUNG PEOPLE GET THE
KILLS AND HEALTH LITERACY THAT
THEY NEED HERE AND NOT GET
INVOLVE BUT SOMEHOW YOU'RE GOING
TO PREDICT THEIR OUTCOME WITH
THIS.
WE DON'T HAVE AN A1C, I WILL SAY
FOR MY ENDOCRINOLOGY, IN THIS,
WE JUST DON'T IN THIS.
RIGHT?
PARENTS WOULD LOVE IF WE HAD A
MEASURE FOR ARK DULT HOOD, THEY
WOULD SAY THANKS.
THEN THE PLANNING, I THINK IT'S
IMPORTANT THAT EVERYBODY SET UP
PRYERITYS THAT ARE IDENTITIES IN
YOUR READINESS ASSESSMENT AND
CLARIFY THE ROLES.
WHAT ARE PARENTS GOING TO DO
HERE IN WHAT IS THE YOUTH GOING
TO DO IN WHAT IS THE PROVIDER
GOING TO DO?
AND OBVIOUSLY DEVELOPING THE
EDUCATION AND THE OTHER KEY
THING IS THE ROLE OF YOU AS A
SPECIALIST VERSUS THEIR PRIMARY
CARE PHYSICIAN AND WE HAVE A
VERY HARD TIME WITH THAT
DISTINCTION IN THIS COUNTRY, BUT
REMEMBER THE ASULT SYSTEMS GOING
TO HAVE THEM FOR 50 YEARS.
YOU HAD THEM FOR 20 OR MAYBE 25.
AND THE PRIMARY CARRY PHYSICIAN
PLAYS A HUGE ROLE IN HELPING
THAT AGING PROCESS THAT WE ALL
DON'T WANT TO ACKNOWLEDGE.
AND THEN OBVIOUSLY TRANSFER,
PUTTING TOGETHER THE
INFORMATION, THE MEDICAL SUMMARY
IS A CRUCIAL COMPONENT HERE, IT
SHOULD BE CONCISE, EVERYBODY CAN
UNDERSTAND THE YOUNG PERSON HAS
IT IN THEIR HANDS WHEN THEY MOVE
AND THEN THERE'S LOTS OF WAYS TO
BRIDGE THE GAP, TELEHEALTH
VISITS, JOINT CLINICS, SPENDING
TIME ON 1 SIDE THEN THE OTHER.
THERE ARE MANY DIFFERENT MODELS
THERE AND THEN BE SURE THAT THEY
ACTUALLY MADE IT, DID THEY SHOW
UP ON THE ADULT WARD LIKE YOU
THOUGHT THAT YOU WERE DPG TO AND
THEN TRY TO OBVIOUSLY
COMMUNICATE WITH ALL THE
CLINICIANS AND COMMUNITY
PARTNERS ABOUT THIS CHANGE AND
WHAT IT MEANS.
SO THERE ARE A LOT OF
MEASUREMENT TOOLS HERE AND I
WANT TO BE SURE THAT THESE
ARE--HAVE BEEN USED WIDELY NOW
IN DIFFERENT SETTINGS DEPENDING
ON WHAT YOU WANT TO DO.
I WILL TALK ABOUT THE CURRENT
ASSESSMENT OF HEALTHCARE
ACTIVITIES, THIS HAS BEEN USED
BROADLY TO ASSESS WHERE PEOPLE
ARE IN THEIR CLINIC, OR IN THEIR
SYSTEM.
IF YOU ARE GOING TO DO A QUALITY
IMPROVEMENT PROJECT, AND NEED A
VERY TIGHT MEASUREMENT AS IS
DONE IN PC ORI GRANTS, THEN YOU
CAN USE THE PROCESS MEASUREMENT
TOOL, THERE'S A LOT OF
VERIFICATION IN THAT, YOU CAN'T
JUST SAY, OH I'M A CERTAIN
LEVEL, YOU HAVE TO ACTUALLY
PROVE IT, SO THAT IT MAKES SENSE
IN YOUR RESEARCH PROJECT AND
THEN SINCE EXPERIENCE IS SUCH A
LARGE PART OF THE QUADRUPLE AIM,
WE HAVE WAYS OF MEASURING
EXPERIENCE BOTH YOUTH PARENTS
AND THE CLINICIAN FEEDBACK
SURVEY.
NOW IN WORKING WITH YOUTH AND
YOUNG ADULT FEEDBACK SURVEYS, T
HAS TO BE VERY CONCISE, LESS
THAN 1 PAGE OR THEY WILL NOT
FILL IT OUT.
SO REMEMBER THAT AS YOU'RE
BEGINNING TO THINK ABOUT THIS.
SO THIS GIVES YOU THE CURRENT
ASSESSMENT.
IT'S VERY EASY.
YOU SIT DOWN AND SAY, WHAT LEVEL
AM I AT MY CLINIC WHERE AM I IN
THIS AND YOU KNOW WHAT THE
GOALPOST IS?
THAT'S LEVEL 4.
AND YOU HAVE 6 CORE ELEMENTS AND
THEN 2 AROUND YOUTH AND PARENT
LEADERSHIP.
THIS HAS PROVED VERY HELPFUL.
I WANT TO YOU KNOW ACROSS ALL
THE SYSTEMS I WORKED WITH, THEY
SCORE ABOUT AN AVERAGE OF 1.5 TO
START.
DO THEY MOVE IN ABSOLUTELY BUT
IT'S A WAY OF PROCESS
MEASUREMENT AND I ENCOURAGE YOU
TO THINK ABOUT SOMETHING ABOUT
THAT AS YOU'RE GOING THROUGH
THIS.
SO THIS IS ANOTHER FEEDBACK
SURVEY, I THINK THE MOST
IMPORTANT 1 THAT EVERYBODY
FOCUSES ON OVERALL THIS, IS FOR
YOUTH WHO HAS GONE TO AN ADULT
SYSTEM, OVERALL, HOW REALLY DID
YOU FEEL TO MOVE TO AND TALK TO
OTHER HEALTHCARE.
HOW DID YOU FEEL ABOUT THAT
EMPLOY THAT WAS A QUESTION WE
TESTED HUNDREDS OF TIMES WITH
THE YOUNG PEOPLE AND VARIES,
SOMEWHAT, AND NOT AT ALL.
THAT'S THE WAY THEY WANTED IT
ASKED AND ANSWERED, IT'S BEEN
VERY HELPFUL, THE OTHER SYSTEMS
HAVE BEEN HELPFUL IN CORING THAT
AND ASKING HOW GOOD YOU ARE AS A
CLINICIAN, ET CETERA.
NOW THIS 1 IS A MEDICAL HOME
FEEDBACK SURVEY, IT'S BEEN WELL
VALIDATED AND WE ADAPTED IT FOR
DOING FEEDBACK SURVEYS FOR
CLINICIANS AND THAT'S WHAT WE
USE FOR THE STUDY I PRESENTED TO
YOU.
AS DR. GORDON MENTIONED, WE HAVE
LOTS OF WAYS TO HELP YOU THINK
ABOUT THIS, HOW TO IMPLEMENT THE
6 CORE ELEMENTS, THERE'S A WHOLE
QUALITY IMPROVEMENT PRIMER WITH
ALL EXAMPLES FROM HEALTHCARE
TRANSITION FROM SORT OF THE IHI
BACKBONE AND THEN, I GOT
TOGETHER WITH A LOT OF OUR
SYSTEMS AND WE PUT TOGETHER
THIS--HOW CAN YOU DO THIS?
WHAT ARE SORT OF FAIL SAFE STEPS
YOU WANT TO THINK ABOUT AND
YOU'RE ALREADY WELL PAST STEP 1
HERE WHICH I THINK IS IN STEP 2,
YOU'RE DEVELOPING A PLAN, SO
THIS IS ABOUT I WOULD SAY--12
BIG SYSTEMS ALL AGREED THAT
WITHOUT THESE, YOU HAVE A VERY
HARD TIME MAKING IT HAPPEN OVER
A PERIOD OF TIME.
WE HAVE A LOT OF RESOURCES FOR
YOUTH AND YOUNG ADULTS AND YOU
CAN SEE HERE MOST OF THEM HAVE
BEEN SET UP WITH YOUNG ADULTS
AND THERE'S A QUICK VIDEO, YOU
CAN SEE IN THE UPPER RIGHT HAND
CORNER MADE BY YOUNG ADULTS
ABOUT WHAT IS THIS WHOLE THING
OF HEALTHCARE TRANSITION ANYWAY,
SO I ENCOURAGE YOU TO SEND YOUNG
PEOPLE TO THIS PART OF WEBSITE
TO HAVE A ELECTRIC AT SOME OF
THESE RESOURCES.
--LOOK AT SOME OF THESE
RESOURCES.
SO NOW LET'S LOOK AT 2 PROGRAMS
AND WHAT THEY DID, THE FIRST 1
IS GOING TO BE A MULTISPECIALTY
MULTISITE PROJECT.
THIS A RESEARCH PROJECT FUNDED
BY PC ORI FUNDED OVER 5 YEARS
AND IT WAS GIVEN TO ATRIUM FOR
YOUTH WITH SICKLE CELL DISEASE.
I AM ONLY PRESENTING THE
TRANSITION PROCESS, THERE ARE
LOTS OF COMPONENTS TO THIS, IN
THE MIDDLE OF THIS COVID
HAPPENED.
SO DID THEY GET ALL THE NUMBER
OF PEOPLE THEY WANTED IN THE
STUDY?
NO.
WE WERE TALKING ABOUT THAL
MORNING, HOW DO YOU CONVINCE
PEOPLE TO DO WHATEVER PILOT YOU
WANTED TO DO, YOU KNOW THIS.
OUT THERE IT WAS VERY HARD
DURING THIS TIME.
SO THESE, THE PROCESS
MEASUREMENT TOOL, THE TOP CORE
IS A HUNDRED, JUST ON TO REMIND
YOU, AND THEY DID SORT OF A QI
PROCESS BIANNUAL SITE VISITS,
ANNUAL CONFERENCES, AND THEY
WANTED THEM TO REACH 90, AT A
LEVEL 90.
THAT'S A HUGE, YOU WILL SEE
THAT'S A BIG LEFT AT HOW FAST
THEY GOT THERE IN THE 5 YEAR
PROCESS, RIGHT?
THEY DID OUTCOME MEASURE WANTS,
THEY ARE NOW LOOKING AT THE
DATA, DECREASED MORTALITY RATES,
THAT WILL BE TOUGH IN THE MIDDLE
OF COVID.
THEY LOST A LOT OF THEIR PEASHS
DURING THAT TIME EMPLOY LOST TO
FOLLOW UP, ER VISITS, THOSE
KINDS OF THINGS.
THIS WILL BE HARD TO INTERPRET
BUT I THINK THEIR PATIENT
SATISFACTION WILL PROBABLY COME
OUT ON TOP HERE.
IT LOOKS SO, ALREADY.
SO HERE THEY ARE, THIS IS AT 20
MONTHS, THEY DID PRETTY WELL,
REALLY BOTH THE PEDIATRIC AND
ADULT CLINICS, YOU SEE THEM
SITES A-N, THERE WERE 14 SITES
ACROSS THE SOUTHEAST, VERY
DIFFERENT, SOME SMALL, SOME
LARGE, AND YOU COULD SEE THAT
THE ADULT CLINICIANS WERE A
LITTLE BIT BEHIND IN THIS
MEASUREMENT AT 24 MONTHS BUT
OVERALL, EVERYBODY GOT THERE.
AND THAT WAS AT 54 MONTHS.
SO IT DOES TAKE TIME, WHAT DO WE
LEARN HERE?
WE LEARN THAT IT'S 18 MONTHS TO
REALLY GET IT UP AND RUNNING IN
A LARNL SYSTEM AND YOU HAVE TO
THINK ABOUT THAT AND THAT
EVERYBODY WANTS A QUICK TURN
AROUND.
IT'S JUST CHANGING PRACTICE AND
HARD SO YOU SEE, THEY WENT FROM
19 TO 97, IT WAS QUITE
IMPRESSIVE ACTUALLY IN THAT
PROCESS.
SO NOW LET'S TALK ABOUT
CHILDREN'S MERCY KANSAS CITY.
THIS IS A NOT FOR PROFIT
PEDIATRIC ACADEMIC HEALTHCARE
SYSTEM.
HUGE SYSTEM, 700 MEDICAL STAFF
MEMBERS, AND ABOUT A HUNDRED AND
50,000 UNIQUE VISITS, SO YOU GET
THE SENSE OF THE SIZE OF THIS
AND THEY WANTED TO DO THIS, THEY
PUT IT IN THEIR STRATEGIC PLAN
IN 2015, AND THEY BEGAN SORT OF
THINKING ABOUT WELL, HOW MANY
PATIENTS ARE ACTUALLY--WERE OVER
12 IN WHO DO WE NEED TO TARGET.
YOU CAN SEE IT'S A LARGE NUMBER
IN THAT SYSTEM, IT'S ACTUALLY
GROWN BECAUSE WE'RE DOING A
GREAT JOB IN PEDIATRICS, PEOPLE
ARE SURVIVING AND THEN THEY
ACTUALLY LOOKED AT THE NUMBER OF
YOUNG ADULTS OVER THE AGE OF 25
SITTING IN THE SYSTEM AND IT
SHOCKED EVERYBODY.
SO THAT WAS WHAT BEGAN TO BE THE
MOTIVATING FACTOR, THE WEIGHT
TIMES FOR NEW PATIENT VISITS
WERE TOO LONG, 2 YEARS IN SOME
INSTANCES.
AS YOU KNOW THAT, TRY TO GET
SOMEBODY IN FOR AN AUTISM
EVALUATION OUT THERE, MENTAL
HEALTH, YOU KNOW THIS, IN THE
SYSTEMS OUT THERE, THEY REALIZED
THAT THEIR BEAN COUNTERS IT'S
BETTER THAT HAVE THEM FOR 21
YEARS THAN THE OTHER 4, SO THERE
WAS A FINANCIAL MOTIVATOR HERE,
I HATE TO MENTION IT BUT THOSE
ARE THE FACTS WHEN WE GET PEOPLE
TO THINK ABOUT THIS.
THEY GOT ENGAGEMENT EARLY ON
FROM CONSUMERS, THEY CREATED A
COMMITTEE WITH WORK GROUPS.
PARTICULARLY THEY HAD H. I.T. AT
THE TABLE, THEY WORKED WITH
CERNER AND THEY GOT CERNER
INTERESTED IN IT FROM A GENERAL
STANDPOINT, THEY HAD EDUCATORS
IN MARKETING AND OUTCOME, NOW
THE MARKETING BECAME A VERY
IMPORTANT COMPONENT OF THIS,
MARKETING IT TO FAMILIES, AND TO
CLINICIANS AS THEY BEGAN THIS
PROCESS AND THEY HAD TO MAKE A
LOT OF INFRASTRUCTURE CHANGE
ANDS THEY CHOSE THE PROCESS AND
INCORPORATED IT INTO THE SYSTEM,
UNIVERSAL CLINIC FLOW, AND
ENGAGE THE MEDICAL DIRECTORS AND
STAFFS OF CLINICS, SO THERE WAS
A CHAMPION IN EVERY CLINIC AND
THEY ROLLED THEM IN OVER A 4
YEAR PERIOD.
SO THEY HAD A PILOT OF A FEW AND
THEN THEY ROLLED IT OUT ACROSS
THE INSTITUTION AND THE
OUTPATIENT SETTING.
SO WHAT DID THEY DO, THEY GAVE A
POLICY TO ALL 14 YEAR-OLDS THAT
TOLD THEM WHEN THEY WERE GOING
TO BE LEAVING THE INSTITUTION
AND EVERYBODY HAD TO AGREE ON
IT, THAT WAS THE DEAL.
THEY DID A READINESS ASSESSMENT,
HAD A GOAL SETTING PROCESS ANDA
I DISCUSSION, THAT TURNED OUT TO
BE THE MOST IMPORTANT FOLLOW
THROUGH THEY FIGURED OUT IN
THEIR SYSTEM.
THEY'VE BEEN AT THIS NOW FOR
ABOUT 8 YEARS, THEY DO A LOT OF
REPORTS BACK TO CLINICS ABOUT
MEASURING THEIR SUCCESS IN THAT
DISCUSSION AS WELL AS MISSED
OPPORTUNITIES.
OOPS THEY FORGOT TO TALK ABOUT
IT ALTOGETHER IN A VISIT.
THEY HAVE MEDICAL SUMMARY
TEMPLATE THAT PEOPLE CAN TWEAK
AND THEN THEY HAVE A TRANSFER
ORDER AND DATE.
SO IF SOMEBODY CALLS BACK TO THE
INSTITUTION, THEY HAVE BEEN
TRANSFERRED, THEY'RE EAR MARKED
SO THEY ASK WHY YOU'RE CALLING
BACK, WHAT HAPPENED SO THEY'RE
VERY CLEAR THAT WHEN THEY LEAVE
THE SYSTEM, THEY HAVE LEFT THE
SYSTEM UNLESS THERE'S AN
EMERGENCY OF SOME SORT, RIGHT?
AS I SAID, IT CHAMPIONS AND THEY
HAD 3 ADULT HOSPITALS THAT THEY
HAD ON SPEED DIAL BECAUSE
GETTING AN ADULT ON SPEED DIAL
AND VERY HARD.
SO FIRST CARE CAN THEN
SUBSEQUENT SPECIAL CARE OUT OF
THIS PARTICULAR INSTITUTION
EMPLOY THEY HAVE A VERY
EDUCATION PROCESS, YOU CAN SEE
I'M PUTTING THINGS UP THERE,
THEY HAVE THEIR GOALS, YOUNG
PEOPLE CHOOSE A GOAL FOR A YEAR,
THERE'S A LOT OF INFORMATION IN
THEIR EMR DEVELOPED BY THE
SYSTEM THAT YOU CAN USE TO HELP
THEM THINK ABOUT COMPLETING THAT
GOAL, AND MAKES IT EASIER FOR
EVERYBODY.
NOBODY'S REINVENTING THE WHEEL,
ALL THAT INFORMATION IS THERE.
THEY HAD INVOLVEMENT AND STILL
HAVE INVOLVEMENT OF BOTH THEIR
PARENT ADVISORY COUNCIL AND
THEIR TEEN ADVISORY COUNCIL.
THEY HAVE THEM IN EACH CLINIC.
SO EVERYBODY IS IN A FEEDBACK
LOOP, ONCE THEY'RE UP AND
RUNNING, THEY GET FEEDBACK FROM
THIS GROUP WHO ARE OBVIOUSLY
GETTING THEIR CARE IN THAT
PARTICULAR CLINIC.
SO WHAT ARE THE OUTCOMES IN
WELL, THEY WANTED TO KNOW THE #
OF YOUTH RECEIVING TRANSITION
READINESS ASSESSMENTS, DOING
GOAL SETTING AND RECEIVING
HEALTHCARE EDUCATION IN THAT
ORDER.
SO THEY HAVE A DASHBOARD THAT
GOES UP EVERY 6 MONTHS AND
REPORTED EVERY YEAR DOWN TO THE
INDIVIDUAL CLINICIAN ABOUT WHO'S
DOING IT.
THERE ARE SPECIFIC
IMPLEMENTATION SURVEYS THEY USE
ON CURRENT ASSESSMENT AND
FEEDBACK SURVEYS FOR YOUTH AND
FAMILIES 6 MONTHS AFTER THEY
LEAVE THE INSTITUTION AND THEY
HAVE A BONUS SYSTEM IN THEIR
COMPENSATION SYSTEM, HOW WELL
YOU DO MATTERS IN A SMALL WAY,
THAT'S NEW AND IT'S BEEN VERY
INTERESTING TO SEE, HOW MUCH IT
CHANGED THE UPTAKE OR NOT.
IT DEPENDED ON THE DIVISION, IT
WAS I THINK FASCINATING WHEN YOU
THINK ABOUT IT.
YOU CAN SEE IN 2016 THEY HAD 9
DIVISIONS IN THEIR CURRENT
ASSESSMENT OF THE TOP IS 32,
JUST TO REMIND YOU ON THE
CURRENT ASSESSMENT AND THEN IN
2019 THEY HAD NEARLY ALL 15
DIVISION ANDS THEY HAD A MARKED
INCREASE ACROSS THE BOARD IF ALL
OF THEM.
NOW THIS PRACTICE PLAN, CAN YOU
SEE IF YOU'RE AT LEAST 10% ARE
MEETING THE PAIRED METRIC OF
DOING THE READINESS ASSESSMENT
AND AS THE TEAR CLOSE OFF SO
THAT'S A PAIRING METRIC.
SO WHAT ARE THE KEY FEATURES,
I'M GOING TO WRAP UP AND LET
DR. GORDON TALK TO YOU ABOUT
YOUR POTENTIAL EXCITING PLANS.
SO SENIOR LEADERSHIP ENGAGEMENT
OF KEY PLAYERS, AND OUT THERE,
IN THE GENERAL PROCESS IT'S
REALLY IMPORTANT POINT AS A
CHILDREN'S HOSPITAL TO HAVE
ADULT CLINICIANS ON THESE
COMMITTEES, ALTHOUGH MANY OF
THEM WILL NOT BE AT THE
INSTITUTIONS, THEY GET THEM FROM
THEIR PAIRED INSTITUTIONS ACROSS
THE WAY SO THAT EVERYBODY SERVED
IS INFORMED ALONG THE PROCESS
AND OBVIOUSLY YOUTH AND
FAMILIES, METHODOLOGY, NOW YOU
HAVE WANT TO HAVE MEASURABLE
AIMS AND EVERYBODY AGREE WHAT
SUCCESS LOOKS LIKE.
YOU'RE A RESEARCH INSTITUTION, I
WISH WE HAD AN A1C THAT WOULD
SAY THAT WOULD SAY, I HAVE DONE
IT.
THIS TEST, IT'S A QUALITY
IMPROVEMENT PROCESS, SO IT'S
GOING TO BE A LOT OF THINGS YOU
HAVE TO LIVE WITH THAT AREN'T
GOING TO BE MEASURED TO THE
P-VALUE HERE.
AND OBVIOUSLY HARD WIRING INTO
THE PROCESS THROUGH YOUR EHRV1,
USING SOME KIND OF PROCESS AS A
BACKBONE, IT'S GOT TRANSITION
AND THERE ARE OTHER 1S OUT
THERE, ASK OBVIOUSLY CONNECTING
REGIONAL LEGAL AND NATIONALLY, I
WILL TELL YOU HOW YOU'RE
CONNECTED NATIONALLY AND THROUGH
OUR LEARNING COLLABORATIVE, AND
VUBSLY HEARING SUCCESS AND
LESSONINGS LEARNED PUBLISH WHAT
YOU LEARNED.
YOU ALL KNOW IT DIDN'T HAPPEN IF
YOU DIDN'T PUBLISH IT.
SO I'M HAMMERING ON THE GROUP TO
DO THAT.
SO THERE'S A LOT OF IF HE
EVERRER, I MUST ADMIT, ONCE
ERR HUMAN CAME OUT, WE BEBAN TO
MESSAGE DIFFERENTLY.
THERE USED TO BE 1 PUBLICATION A
MONTH AND NOW WE HAVE 30-50,
IT'S HARD TO GET PAPERS
PUBLISHED, WHICH IS CRAZY, BUT
IT'S--IT'S A GOING MOVEMENT OUT
THERE BUT ACTUALLY WHERE ARE WE?
THIS IS WHERE WE ARE, WE'RE
BUILD THE TRACKS AS WE GO,
WELCOME TO THIS WONDERFUL
MILIEU, OF THIS BIG CHANGE THAT
DOES MAKE A BIG DIFFERENCE AND
JUST TO LET YOU KNOW, WE'RE VERY
EXCITED THAT THE IN, IH WILL BE
REJOINING THE LEARNING
COMMUNITY.
SO THIS HAS BEEN GOING ON FOR
ABOUT 10 YEARS, ONCE A MONTH
I'VE HAD ANYWHERE BETWEEN 8 AND
15 HEALTH SYSTEMS COMING IN, I'M
AMAZED WE'RE TILL DOING IT, THEY
STILL WANT IT, AND YOU CAN SEE
WHO'S CURRENTLY ON IT, A BIG
VARIETY OF PEOPLE WHETHER IT'S
AN FQHC, UNIVERSITY, AND BIG
SYSTEMS THAT ARE PART OF THIS
THAT COME, THEY PRESENT WHAT
THEY'RE DOING, PEOPLE ASK A LOT
OF LOT OF LEARNING COMMUNITY AND
WE PUBLISH PAPER S, WE'RE GOING
TO A TRANSITION CONFREN, THERE
WILL BE 9 PRESENTATIONS FROM
THESE GROUPS AND THEY'RE MOVING
HAVING ABILITY TO COLLABORATE
ACROSS DIFFERENT SYSTEMS TO
LEARN THE BEST PRACTICES ARE.
SO I AM GOING TO CONCLUDE.
I THINK IT IS A MAJOR CONCERN
HEALTHCARE TRANSITION, SO I'M
GLAD YOU ARE GOING TO BE JOINING
IN THIS PROCESS, AND I THINK A
STANDARDIZED PROCESS IS THE WAY
YOU HAVE TO GO TO IMPROVE
OUTCOMES.
I DON'T THINK THAT'S A QUESTION
ANYMORE.
COMMUNITY PARTNERSHIPS,
REMEMBER, YOU'RE A LEADER IN
THIS COUNTRY.
THE PEOPLE YOU INTERFACE WITH
OUT THERE ARE--YOU HAVE AN
OBLIGATION AS A ROLE MODEL, YOU
KNOW THAT AND SO I THINK THIS IS
EXCITING THAT YOU ARE GOING TO
TAKE THIS ON AND OBVIOUSLY,
THESE QUALITY SYSTEM
IMPROVEMENTS CAN IMPROVE HEALTH
OUTCOMES TO BECOME ADULTS THAT
ARE MORE HEALTH YEAR AND ENGAGED
AND THAT'S REALLY THE BOTTOM
LINE OF WHAT WE WANT.
SO I WANT TO THANK YOU FOR
INVITING ME.
I HOPE YOU'RE NOT LIKE EITHER OF
THESE PICTURES HERE, BUT I THANK
THE INVITATION, THE OBVIOUSLY
THE MANY PEOPLE THAT MADE IT
POSSIBLE FOR THE NATIONAL CENTER
TO REALLY MOVE AS IT HAS AND ALL
OF MY PATIENTS.
SO I WILL TURN IT OVER TO
DR. GORDON.
[ APPLAUSE ]
>> THANK YOU SO MUCH FOR THE
OPPORTUNITY TO TALK AND THANK
YOU FOR SHARING THE PODIUM.
THIS IS SUCH AN IMPORTANT TOPIC.
SO OUR GOAL TO THEM WE'VE BEEN
THINKING FOR THE PAST 3 MONTHS
OR SO ABOUT HOW DO WE IMPROVE
DISEASE KNOWLEDGE OF ADOLESCENT
IN ADULTS OR AYA, OR DO WE
DECREASE VARIABILITY, AND THIS
IS IMPORTANT ALL OF OUR PATIENTS
CENTER ON RESEARCH PROTOCOLS SO
THIS IS ALSO IMPORTANT FOR THE
ENTIRETY OF OUR RESEARCH AND
THEN HOW DO WE HELP THEM PREPARE
FOR THAT IMPORTANT MILESTONE AT
18 YEARS?
AT 18 YEARS THEY'RE GOING TO
HAVE TO RESIGN, THE FAMILY HAS
TO RECONSENT BUT THIS TIME THE
PARTIC PLAN TO ANALYZE BY AGE
HAS TO SIGN AS AN ADULT.
--PARTICIPANT HAS TO SIGN AS AN
ADULT.
SO WE ARE ABOUT TO LAUNCH WITH A
LITTLE HELP FROM OUR FRIEND HERE
TO THE RIGHT, A QYQA PROJECT AS
A PILOT, OUR ULTIMATE GOAL IS TO
GO THROUGHOUT THE CLINICAL
CENTER, WE WILL BE ASSESSING
METRICS RELATED AND KNOWLEDGE
OUR PATIENTS HAVE OF THEIR OWN
DISEASE, KNOWLEDGE AROUND WHAT
MEDICATIONS THEY TAKE, KNOWLEDGE
AROUND SELF-CARE, LIFE KILLS,
AND THEN AT THE SAME TIME WE'RE
GOING TO TALK ABOUT
SATISFACTION, SO HOW DOES IT
FEEL AS A PATIENT TO GO THROUGH
THIS PROCESS, WHAT ABOUT
PATIENTS OR GUARDIANS AND THEN
US AS CLINICIANS, HOW DO WE FEEL
ABOUT HOW IT'S GOING AND WHETHER
OUR MESSAGES ARE GETTING ACROSS.
WE ARE GOING TO BE PREPARING
MATERIALS ON THE ADULT UNITS, WE
WILL GIVE OUR PATIENTS THE
OPPORTUNITIES TO VISIT THOSE
UNITS ULTIMATELY AND AS
DR. WHITE HAS TALKED ABOUT,
RIGHT BEFORE AGE 18, THEY WILL
HAVE THE CHANCE TO MEET THE NEW
PROVIDER AND HAVE A WARM
HANDOFF.
SO HERE WE GO, SO WE ARE GOING
TO, IF I CAN GET THIS TO WORK,
WE ARE GOING TO LAUNCH A PILOT
WITH 5 ICs INITIALLY, THESE
ARE ICs WHO HAVE BEEN THINKING
ABOUT TRANITION, THEY'VE DONE
PRELIMINARY WORK OR THEY HAVE
BEEN ORGANIZING THEMSELVES IN A
WAY, THEY RECOGNIZE IT'S
IMPORTANT FOR THEIR PATIENTS SO
THEY'RE ALREADY ENGAGED.
WE WILL TEST RESOURCES AND A
TRANSITION TOOL KIT.
WE SPENT A COUPLE HOURS THIS
MORNING THINKING ABOUT THE TOOL
KIT, WHAT'S IN IT, THE LEADERS,
MATERIALS, WHEN DO WE START,
WHEN DO WE ROLL IT OUT AND
CLINICIAN TEAM ANDS FAMILIES
WILL REVIEW THE HELPFULNESS OF
THIS RESOURCES AND THEN WE'RE IN
THE PROCESS OF DEFINING METRICS
OF SUCCESS.
WHAT DOES SUCCESS LOOK LIKE?
WE WILL ESTABLISH A COHESIVE
TRANSITION OF CARE LETTER FOR
PATIENTS, FOR THEIR FAMILIES,
THEY'RE GOING TO SEE IT AT THE
BEGENERATEDDING AND THEN THEY'RE
GOING TO SEE IT AGAIN AS THEY GO
THROUGH THE PROCESS, AND IT ALSO
ACKNOWLEDGES WHAT DIFFERENCES
THEY MIGHT ENCOUNTER AND
CHALLENGES, WE'LL CREATE A FACT
SHEET ABOUT THE ADULT UNITS TO
GIVE TO OUR PEDIATRIC PATIENTS.
WE WILL FOLLOW THESE METRICS
ALONG A TIMELINE EMPLOY OUR GOAL
NOW IS OVER A YEAR AND WE WILL
BE MAKING SURE WE WILL COME TO
CONSENSUS ON THAT ASK ULTIMATELY
THERE WILL BE A TOUR OF THE
ADULT UNIT, THE WARM HANDOFF,
AND THEN OUR GOAL IS THAT SIGN
OUT TO THE NEW ADULT CLINICIAN.
I COME TO THIS PERSONALLY AS A
PEDIATRIC EBD O CRINOLOGYIST AND
I'VE HAD TROUBLE OVER THE YEARS
GETTING MY PATIENTS OVER THE
BRIDGE AND I REALIZE NOW, WE
DIDN'T DO ENOUGH OF OUR HOME
WORK BEFORE HAND AS GOOD
INTENTIONED BUT WE NEEDED TO DO
MORE BACKGROUND WORK.
SO I'D REALLY LIKE TO
ACKNOWLEDGE AND THANK MY GREAT
COMMITTEE.
IT TAKES A VILLAGE TO DO THIS
WORK AND THIS HAS BEEN SUCH A
PLEASURE TO WORK WITH ALL OF
YOU, AGAIN WHAT I PRESENT TODAY
IS REALLY THE CULMINATION OF ALL
OF OUR EFFORTS AND I HOPE WE CAN
COME BACK AGAIN MAYBE IN A YEAR
OR SO AFTER WE COMPLETE THE
PILOT AND SHOW OFF WHAT WE'VE
DONE AND WITH THE ULTIMATE GOAL
TO BE ABLE TO GO THROUGHOUT THE
CLINICAL CENTER.
SO THAT IS WHAT I HAVE AND I
WILL HAVE DR. WHITE COME UP AND
WE WILL BE HAPPY TO TO ANSWER
ANY QUESTIONS.
THANK YOU SO MUCH.
>> WONDERFUL TALK.
APPRECIATE THIS A LOT.
A LOT SEEMS TO BE FOCUSED ON THE
CLINICIAN IN THE CENTER, AND A
LOT OF THIS FROM THE WEBSITES
ARE THERE OTHER METHODS SUCH AS
LIFE SKILLS DOING THAT NOT IN
THE CLINICAL SETTING BUT IN THE
OUTSIDE ACADEMIC SETTING SO WHEN
WE HAD ISSUES ABOUT FINANCIAL
LITERACY WE SET UP CENTERS WHERE
SCHOOLS DID FIELD TRIPS TO LEARN
FINANCIAL LITERACY SAY FOR
CODING, IS THIS SOMETHING WE
NEED AN INDIVIDUAL TOUCH IN THE
CLINIC OR SOMETHING WE CAN DO
MORE GLOBALLY OUT IN THE
COMMUNITY AS AN ACADEMIC
EXERCISE FOR CHILDREN
EVERYWHERE?
>> THANK YOU IF ARE THAT
QUESTION.
SO THERE'S ALWAYS A QUESTION
ABOUT HOW YOU DEFINE THE
TRANSITIONS, ARE YOU GOING TO
LOOK AT ALL OF THEM, RIGHT?
ARE YOU GOING TO LOOK AT
INDEPENDENT LIVING WORKFORCE,
PARTICIPATION AS FINANCIAL LIT
RASY, HOWEVER YOU WANT TO
DO--FINANCIAL LITERACY, HOWEVER
YOU WANT TO DO IT.
SO SOME INSTITUTIONS OR HEALTH
SYSTEMS HAVE A READINESS
ASSESSMENT THAT HAS HELPED PLUS
ALL OF THOSE AND THEREFORE ALL
THAT INFORMATION HAS TO BE
AVAILABLE FOR THE CLINICIANS TO
DISCUSS IT, SO FOR EXAMPLE,
MERCY, ASSOCIATED WITH 2 STATES,
1 BROADENED MEDICAID, 1 DIDN'T.
THEY HAVE TO HAVE A LOT OF
INFORMATION FOR JUST HEALTH
INSURANCE ACROSS THE BOARD.
SO YES, THERE ARE SOME
INSTITUTIONS THAT TAKE IT SORT
OF MORE WHOLISTICALLY AND THEN
SOME INSTITUTIONS THAT ARE JUST
FOCUSING ON HEALTHCARE
TRANSITION.
SO YOU DECIDE WHAT YOU'RE GOING
TO DO.
NOW THOSE THAT ARE JUST DOING
HEALTHCARE TRANSITION, OBVIOUSLY
ARE GOING TO ASK QUESTIONS
AROUND THEIR CAPACITY, KNOWING
ABOUT THEIR INSURANCE, WHAT THEY
SHOULD DO, SO THEY CAN ACTUALLY
GET THEIR HEALTHCARE TRANSITION
BECAUSE SO HAVING THAT KIND OF
INFORMATION AND EXTREMELY
HELPFUL AND NOBODY'S ASKING THE
CLINICIAN TO JUST KNOW
EVERYTHING.
YOU CAN'T.
BUT THE INSTITUTION THAT'S
WORKING CAN PUT THIS INFORMATION
TOGETHER ABOUT HOW TO CALL AND
ASK NUMBERS.
I HOPE I ANSWERED YOUR QUESTIONS
BECAUSE CERTAINLY THERE'S A LOT
OF INFORMATION OUT THERE TO HELP
PEOPLE TBAIN THE KNOWLEDGE AND
OTHER ASPECTS OF THEIR LIFE
WHETHER IT'S THROUGH SCHOOLS, ET
CETERA AND SO THE HELT CARE
DELIVERY SYSTEM DOESN'T DO IT
ALL.
>> YOU KNOW 1 ARK DITIONAL
POINT, THANK YOU, IS WE'RE
TRYING TO THINK ABOUT HOW WE
PREPARE THE YOUNG PERSON TO GO
HOME.
SO THEY COME TO THE CLINICAL
CENTER, TRANSITION ACROSS THE
CLINICAL CENTER, BUT ALSO WHAT
COMMUNICATION HAPPENS PRIMARY
CARE DOCTOR, THE PRIMARY
SUBCOMMERCIALIST AT HOME, SO
THAT'S PART OF OUR FRAMEWORK,
OUR MODEL.
>> DR. WHITE, THANK YOU VERY
MUCH FOR THE SUPERB PRESENTATION
AND FOR YOUR WORK AND LEADERSHIP
IN THIS FIELD AND F DR. GORDON,
THANK YOU FOR LEADING THE
INITIATIVE HERE.
WE HAVE A COUPLE QUESTIONS FROM
THE VIDEOCAST AUDIENCE, THE
FIRST IS PLEASE DESCRIBE AS AN
EXAMPLE THE TRANSITION OF AN
ADOLESCENT WHO AT AGE 18 WITH
DIABETES MAY LOSE SUPPORT.
HOW DOES YOUR ORGANIZATION
APPROACH THIS COMBINATION OF
CLINICAL CARE,A , ACCESS AND POY
ISSUES?
NWHAT AN INCREDIBLY WONDERFUL
AND DIFFICULT QUESTION TO
ANSWER.
YOU KNOW, NOT EVERY STATE HAS
EXPANDED MEDICAID.
IN THOSE STATES SADLY THERE'S
NOT A LOT OF OPTIONS HERE, WE'RE
VERY AWARE AND HAVE INFORMATION
ABOUT EACHITATE.
WE JUST CAN A REPORT CALLED THE
AGING OUT PROCESS WHERE WE
OUTLINED ALL THE ISSUES THAT
HAPPEN AT AGE 18 AND WHERE YOU
CAN POTENTIALLY GO FOR MORE
INFORMATION BUT SADLY, A YOUNG
PERSON WITH DIABETES WHO
ACTUALLY IS IN A STATE THAT DID
NOT EXPAND MEDICAID IS IN A LOT
OF TROUBLE AND WE WORK HARD AT
MANY OF SOME AREAS AND CERTAINLY
THE DIABETES ASSOCIATION AND
MANY OF THE PATIENT AND DRUG
COMPANIES, AS MUCH AS YOU MAY OR
MAY NOT LIKE THEM ARE TRYING TO
FILL THE GAP, BUT IT'S A MAJOR
HOLE IN OUR DELIVERY SYSTEM AND
WE CERTAINLY AS A SMALL NATIONAL
CENTER CAN'T CHANGE THAT BUT WE
CAN CERTAINLY POINT IT OUT.
>> THANK YOU.
HOW ARE TEENS WANTING TO LEARN?
ONLINE, VERSUS IN PERSON,
MEETING WITH TEENS GOING THRU
THE SAME PROCESS, ALSO CHILDREN
INVOLVED IN THE PROJECT HERE?
>> YOU KNOW THE QUESTION IS I
THINK WE'RE GOING TO LEARN,
WE'RE GOING TO LEARN.
WE'RE STILL KIND OF BATTING
AROUND DIFFERENT OPTIONS, EVEN
HOW MUCH IS THE PATIENT GOING TO
FILL OUT VERSUS THEIR PARENTS,
VERSUS THE CLINICIAN ASKING THE
QUESTIONS TO MORE OF AN
INTERVIEW, MANY OF OUR PEDIATRIC
PATIENTS ARE SERVED BY THE
WONDERFUL PARENTS AND WE WILL BE
PARTNERING WITH THEM AND IT'S A
GOOD THOUGHT TO HAVE THEM BE
PART OF THE MODEL WE'RE THINKING
ABOUT.
AND I WOULD GUESS AND AS THE
MOTHER OF 2 YOUNG ADULTS HAVING
ZOOM TECHNOLOGY INVOLVED WOULD
MAKE IT MORE ATTRACTIVE TO THE
YOUNG PEOPLE EMPLOY.
>> YEAH, IT'S SUCH AN
INTERESTING QUESTION.
I THINK EVERY SYSTEM HAS SENT
OUT A SURVEY, WHAT'S THE SECOND
WORLD WAR ARE?
A THIRD, A THIRD, A THIRD AND
INTERESTINGLY ENOUGH, COVID WAS
EBS SIGHTING, NOW MANY OF THEM
WANT TO COME BACK TO THE CLINIC
BECAUSE THEY GET OUT OF SCHOOL,
THERE'S ALL SORTS OF MOTIVATION
HERE.
SO I THINK OFFERING HOWEVER YOU
CAN DO IT TO GET THE INFORMATION
YOU NEED IS PROBABLY THE BEST
WAY.
THERE'S NO 1 WAY, I GUESS?
YOU KNOW WE'RE ALL DIFFERENT AND
TEENAGERS ARE ALL DIFFERENT.
>> I HAVE MORE QUESTIONS FORLET
VIDEOCAST BUT IF YOU HAVE
IN-PERSON, I WILL KEEP GOING BUT
IF YOU HAVE QUESTIONS HERE FOR
IN-PERSON, MOVE ME OVER.
>> GREAT TALK, WE FIND DOCTORS
WHO CAN HELP WITH ADULT PATIENTS
AND HELPING WITH COGNITIVE
DISABILITIES.
>> WELL YOU'RE A VERY SMART
AUDIENCE AS YOU WOULD SUSPECT
EMPLOY THESE ARE CRUCIAL ISSUES
HERE, I THINK THE MOST DIFFICULT
GROUP TO MANAGE TRANSITION IS
THOSE WITH COGNITIVE
DIFFICULTIES IN PARTICULARLY THE
MIND FIELD OF SUPPORTED DECISION
MAKING VERSUS GUARDIANSHIP WITH
FAMILIES AND SO FORTH SO I THINK
THAT WE HAVE A LOT OF
INFORMATION ABOUT IT BUT WE'RE
WORKING NOW, THERE'S A NEW
NATIONAL CENTER TO WORK ARK
ROUND AUTISM AND EPILEPSY, SO I
THINK THEY'RE GOING TO FOCUS A
LOT ON THAT PARTICULAR ISSUE.
WE HAVE A WEBSITE THAT DEALS
WITH YOUTH WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES ABOUT
THIS AS WELL.
SO I THINK THE QUESTION THAT WAS
ASKED IS WHERE ARE THE ADULT
PROVIDERS AND THIS IS A VERY
DIFFERENT QUESTION, WE'VE DONE
FOR YEARS IN PEDIATRICS THAT
THEY'RE GOING TO PROBABLY GROW
UP BUT WE REALLY DIDN'T THINK
ABOUT IT VERY MUCH.
I INCLUDE MYSELF IN THAT.
SO NOW WE'RE SUDDENLY LOOKING AT
THE ADULT SYSTEM THAT'S UNDER
HUGE STRAIN JUST TO FIND A
PRIMARY CARE PHYSICIAN IS HARD.
SO YOU HAVE TO BE CREATIVE IN
YOUR MODELS AND MANY SYSTEMS
FINALLY LOCATE A PRIMARY CARE
PHYSICIAN ON THE ADULT SIDE BUT
TILL COME BACK YEARLY TO THE
PEDIATRIC GROUP AS A
CONSULTATION.
THAT'S A VERY DIFFERENT MIND SET
THAN WHERE THEY'VE BEEN.
SO WORKING THAT OUT, ALLOWS
EVERYBODY TO GET THE LONG-TERM
OUTCOME THAT THEY'RE ANXIOUS TO
SEE BUT STILL HAVE THEM GET THE
HEALTHCARE THEY NEED AS GROWING
UP AND BECOMING OLDER SO THAT'S
JUST 1 MODEL BUT THERE ARE MANY
AS THEY'RE TRYING TO PINCH HIT
WITH ALL THESE ISSUES AROUND,
THERE ISN'T, WELL, WHY WOULD
THERE BE SOME OF THESE ADULT
PROVIDERS THAT THESE PEOPLE ARE
JUST SURVIVING, THAT WE JUST
LEARN IT THAT THEY ARE.
>> ANOTHER INTERESTING POINT I
THINK WE WILL HAVE THE
OPPORTUNITY TO THINK ABOUT IS
HOW IT VARIES BY DIAGNOSIS.
SO 1 MODEL, THERE MIGHT BE A
MODEL THAT'S ADOPTED MORE WITH 1
VERSUS ANOTHER AND KIND OF BY
IC, BY DISEASE CATEGORY, SO
WE'LL SEE.
NGREAT.
THANK YOU.
THAT'S ACTUALLY ALL I HAVE FOR
THE VIDEOCAST AUDIENCE, I DON'T
KNOW IF ANYONE HAS ANYTHING?
OH, PLEASE DO?
>> HI, THANK YOU SO MUCH FOR
YOUR TALK AND THANK YOU
DR. GORDON FOR INFORMING US ON
THE EFFORTS AT NIH, I KNOW THAT
A LOT OF THIS WORK VERY
IMPORTANTLY FOCUSES ON
TRANSITION INTO MEDICAL HOME.
I'M WONDERING IF THERE'S ANY
RESEARCH OR ESTABLISHMENT BEST
PRACTICES IN TERMS OF
ADOLESCENTS AND YOUNG ADULTS
WITH SPECIAL HEALTHCARE NEEDS IN
THIS WINDOW WHO EXPERIENCE ACUTE
INSULTS OR HEALTH NEEDS
REQUIRING ADMISSION TO THE
HOSPITAL OR EVEN ADMISSION TO AN
INTENSIVE CARE UNIT.
I THINK DR. GORDON BROUGHT UP
VARIABLE PRACTICE ACROSS
PEDIATRIC AND ADULT SETTINGS I
THINK CLINICALLY I HAVE SEEN
THAT IN MY TRAIN AND I AM
WONDERING IT THERE ANY EFFORTS
THAT ARE FOCUSED ON POTENTIALLY
STANDARDIZING CARE OR AT LEAST
INVESTIGATING THAT IN THE
IN-PATIENT OR ICU SETTING?
>> SO ABSOLUTELY.
IT'S BEEN A CHALLENGE BECAUSE
YOU KNOW YOU HAVE SOME YOUNG
PEOPLE THAT ARE NEVER GOING TO
GET OVER 60-POUND ANDS THEY'RE
SUDDENLY IN AN ADULT SETTING, DO
THEY HAVE THE EQUIPMENT.
SO COVID ACTUALLY SPEARHEADED
THIS, RIGHT, SUDDENLY THERE WERE
ADULT PATIENTS SITTING IN
PEDIATRIC WARD ANDS VICE VERSA
DEPENDING ON WHAT WAS HAPPENING
IN THAT O THEY DEVELOPED A BROWP
ACROSS THE COUNTRY BEGINNING TO
TALK ABOUT IT AND SO THE
HOSPITALLISTS IS VERY INTERESTED
IN THIS, THEY'RE IN THE VERY
BEGINNINGS OF THIS PROCESS, BUT
ABSOLUTELY.
A LOT OF TIMES WHEN A SYSTEM
COMES TO ME, I SAY, ALL RIGHT,
YOU'RE GOING TO HAVE TO DECIDE
WHICH OF YOUR PEDIATRIC
PROVIDERS ARE GOING TO GET ADULT
HOSPITAL PRIVILEGES, AND THAT
QUESTION COMPLETELY FLABBERGASTS
THEM UNTIL THEY BEGIN TO PEEL IT
AWAY AND REALIZE WHAT THAT
MEANS, AND SO I THINK A LOT OF
THIS IS THEY'RE JUST BEGINNING
TO THINK IT THROUGH.
WE DO KNOW THAT IF YOU--IF YOU
DON'T HAVE AN OUTPATIENT PROCESS
GOING ON, THERE WAS A SURVEY, OF
A LOT OF CHILDREN'S HOSPITALS
DONE BY SOME CANADIANS OF
AMERICAN HOSPITALS, AND THAT IF
YOU DON'T HAVE AN OUTPATIENT
PROCESS GOING ON, THE IN-PATIENT
CAN'T HANDLE IT.
IN OTHER WORDS, THE LAST THING
YOU WANT TO DO AFTER SOMEBODY
GOT OUT OF THE ICU IS YOU NEED
TO ACTUALLY LEAVE THE CHILDREN'S
HOSPITAL, THAT'S NOT GOING TO
FLY WELL.
SO I THINK THEY ARE RECOMMENDING
THAT YOU GET THE OUTPATIENT
PROCESS IN TOW HERE AND THE
IN-PATIENT THEN SUPPORTS THAT
PROCESS.
AND LOTS OF INSTITUTIONS ARE
BEGINNING TO SAY, PARTICULARLY
IN DECS LIKE SICKLE CELL
DISEASE, WHERE THEY'RE
ADMISSIONS ARE COMING OR THEIR
VISITS ARE COMMON AND THE
DIFFERENCES IN HOW PEOPLE HANDLE
PAIN MANAGEMENT, IS GETTING
THESE GROUPS TOGETHER AND TRYING
TO FIGURE OUT HOW TO COMMUNICATE
WHO THIS PERSON IS, THEY'RE NOT
A DRUG SEEKER, THERE'S ALL SORTS
OF STATE INVOLVEMENT, STATE
MEDICAID, LICENSING, ALL SORTS
OF THINGS THAT ARE BEGINNING TO
COALESCE AROUND THIS IN
PARTICULAR, SYSTEMS THAT ARE
BEGINNING TO ADDRESS IT SO IT'S
A VERY GREAT QUESTION.
THANK YOU AND IT'S A
BEGENERATEDDING PROCESS BUT
THEY'RE FAR BEHIND THE
OUTPATIENT PROCESS ONGOING.
NTHANK YOU.
THANK YOU ALSO FOR THE QUESTION,
MY LAST COMMENT BECAUSE I SEE
IT'S 1:00 O'CLOCK, THERE IS A
PEDIATRIC TRANSLATIONAL RESEARCH
TEEJIC PLAN FOR THE NIH CLINICAL
TRUSTEES AND I'VE BEEN DELIGHTED
TO BE ASKED TO BE PART OF THAT,
SO WE'RE REALLY TACKLING WHAT
YOU ASKED AND THINKING ABOUT HOW
TO MAKE THE CLINICAL CENTER SAFE
AND HOW TO AVOID THOSE
DEVIATIONS IN CARE.
THE DEVIATIONS DON'T HELP THE
RESEARCH PROTOCOLS, DR. BEBY
MERK, I THINK HER PEDIATRIC
HOSPITAL SERVICE HAS REALLY
HELPED US A LOT AND THE ICU, THE
PEDIATRIC BEDS SO WE DON'T HAVE
TO SEND EVERYTHING TO CHILDREN'S
NATIONAL OR OTHER HOSPITALS.
WELL, THANK YOU AGAIN TO
DR. WHITE AND TO ALL OF YOU FOR
COMING.
>> THANK YOU.
>> [ APPLAUSE ]
>> I AM VERY EXCITED.
I THINK YOU WILL DO GREAT
THINGS.
>> THANKS FOR BEING HERE AGAIN
TODAY.
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