Welcome to the Clinical Center Grand Rounds, a weekly series of educational lectures for physicians and health care professionals broadcast from the Clinical Center at the National Institutes of Health in Bethesda, MD. The NIH Clinical Center is the world's largest hospital totally dedicated to investigational research and leads the global effort in training today's investigators and discovering tomorrow's cures. Learn more by visiting us online at http://clinicalcenter.nih.gov OUR SPEAKER TODAY IS DR. PATIENCE WHITE WHO IS EMERITUS PROFESSOR AT GEORGE WASHINGTON UNIVERSITY SCHOOL OF MEDICINE AND HEALTH SCIENCES AND CO-DIRECTOR OF THE FEDERALLY FUNDED TRANSITION NATIONAL CENTER IN WASHINGTON, D.C. DR. WHITE EARNED HER MEDICAL DEGREE FROM HARVARD MEDICAL SCHOOL AND COMPLETED RESIDENCY TRAINING IN INTERNAL MEDICINE AND TRAINING IN RHEUMATOLOGY AT THE BETH ISRAEL HOSPITAL IN BOSTON FOLLOWED BY ADVANCED TRAINING IN RHEUMATOLOGY AT BRIG HIM AND WOMEN'S -- BRIGHAM AND WOMEN'S HOSPITAL IN ENGLAND. SHE SUBSEQUENTLY COMPLETED HER MASTER'S DEGREE IN EDUCATION FROM GEORGE WASHINGTON UNIVERSITY GRADUATE SCHOOL OF EDUCATION AND DEVELOPMENT AND UNDERTOOK A HEALTH POLICY FELLOWSHIP IN WASHINGTON, D.C. THROUGHOUT HER PROFESSIONAL CAREER SPANNING THREE DECADES SHE'S BEEN ACTIVE IN ACADEMIC MEDICINE, CLINICAL CARE AND RESEARCH AND PUBLIC POLICY. AS A PRACTICING PEDIATRIC AND ADULT RHEUMATOLOGIST, SHE HAS SERVED AS VICE PRESIDENT FOR PUBLIC HEALTH POLICY AND ADVOCACY AT THE RHEUMATOLOGY CENTER AND ASSOCIATE DEAN AND FACULTY AFFAIRS AT GEORGE WASHINGTON UNIVERSITY SCHOOL OF MEDICINE AND HEALTH SCIENCES. SHE IS THE NATIONALLY KNOWN EXPERT IN THE EVOLVING CARE OF PEDIATRICS AND ADULT TRANSITIONS IN CLINICAL CARE. SINCE 2010 AS PART OF HER WORK IN TRANSITION SHE DEVELOPED THE NATIONALLY RECOGNIZED SIX-CORE ELEMENTS OF HEALTH CARE TRANSITION THAT PROVIDES QUALITY IMPROVEMENT ASSISTANCE ON TRANSITION FROM PEDIATRIC TO ADULT CENTRIC HEALTH CARE IN PRACTICE SETTINGS IN INTEGRATED HEALTH CARE DELIVERY SYSTEMS. DR. WHITE HAS BEEN RECOGNIZED AS A MASTER AS THE AMERICAN COLLEGE OF PHYSICIANS AND AMERICAN COLLEGE OF RHEUMATOLOGY AND SERVES ON THE ACPs GOVERNOR'S COUNCIL. SHE IS ALSO PART OF THE AMERICAN ACADEMY OF PEDIATRICS AND HAS DIRECTED ACADEMIC ON TRANSITIONS AND PUBLIC HEALTH. I WOULD LIKE TO ACKNOWLEDGE ASSISTANCE DR. WHITE HAS PROVIDED TO THE TRANSITION COMMITTEE AND ESTABLISHED OUR PROGRAM FOR ADOLESCENCE AND YOUNG ADULTS WITH DISEASE. SHE WILL SPEAK ON TRANSITION FROM PEDIATRIC TO ADULT HEALTH CARE. EVIDENCE, CLINICAL CARE AND RESEARCH RECOMMENDATIONS. PLEASE JOIN ME IN WELCOMING OUR SPEAKER, DR. WHITE. >> THANK YOU FOR THAT VERY KIND INTRODUCTION. I'M REALLY EXCITED TO BE HERE TODAY. I REALLY AM HONORED TO BE INVITED AND I REALLY APPRECIATE PEOPLE TAKING THE TIME THIS MORNING TO LISTEN TO THIS PRESENTATION. I HAVE NO DISCLOSURES. MY PRESENTATION OBJECTIVES ARE QUITE STRAIGHTFORWARD HERE. I'M GOING TO TALK A LITTLE BIT ABOUT HOW I GOT TO WHERE I AM AND THEN TALK ABOUT THE CURRENT CONTEXT AND OUTCOME, EVIDENCE AROUND THE STRUCTURED HEALTH CARE TRANSITION APPROACH INTERVENTION AND I WANT TO ALSO SHOW EXAMPLES OF SOME OF THE QUALITY IMPROVEMENT WORK AROUND THIS AND THEN HAVE A BRIEF ENDING TO DISCUSS SOME OF THE RESEARCH OPPORTUNITIES FROM PEDIATRIC TO ADULT HEALTH CARE. SO, I'M OFTEN ASKED WHY AM I ENGAGED IN THIS AREA OF PEDIATRIC TO ADULT HEALTH CARE TRANSITION. THERE'S THOUGHTS ON MY CAREER EXPERIENCE AND FOLLOW YOUR INTERESTS EVEN IF THEY TAKE YOU FAR AFIELD AND I'LL TELL YOU STORIES OF EACH. ONE INTEREST IS I LOVE IT TO TRAVEL AND I WAS AN ECONOMICS MAJOR INTERESTED IN DEVELOPMENTAL ECONOMICS AND WAS IN VENEZUELA AND ONE AFTERNOON IN COLLEGE ACCEPTED AN INVITATION TO WORK WITH SOME PEOPLE TO GO TO THE BARRIERS OR THE SLUMS OF VENEZUELA WHICH WERE GROWING DRAMATICALLY DURING THAT TIME. I HAD FIRST HAND OBSERVATION TO SEE WHAT A HEALTH CARE DELIVERY SYSTEM WOULD NEED. THERE WAS NO HEALTH CARE DELIVERY SYSTEM IN THESE LARGE COMMUNITIES. I CAME BACK TO THE UNITED STATES AND WENT TO MEDICAL SCHOOL. I HAD NO PLAN TO DO THAT AND THERE I WAS, I MADE A CHANGE IN AN AFTERNOON WHERE I WAS THINKING I WAS GOING CHANGE MY CAREER. AND I WAS TAKING A TRIP WITH MY HUSBAND-TO-BE TO ENGLAND AND FINISHED MY RHEUMATOLOGY WORK AT BRIGHAM AND I DECIDED TO STOP IN AND SEE DR. BARBARA ENSELL. SHE WAS A GIANT IN THE FIELD OF PEDIATRIC RHEUMATOLOGY AND WAS AN INTERNIST AT THE POINT AND THOUGHT IT WAS INTERESTING TO DO AND SHE INVITED ME TO COME STUDY WITH HER FOR A YEAR AND A HALF IN THE FUTURE. I JUMPED AT THE OPPORTUNITY MY HUSBAND HAD TO LEAVE OUR CAREERS AND GO STUDY WITH HER AND WHAT DID I LEARN? I WANTED TO WORK WITH YOUNG PEOPLE AS WELL AS OLD PEOPLE. SO MY INTEREST GREW TO BECOME [BACKGROUND NOISE] SO THE SECOND POINT IS REALLY EXEMPLIFIES [BACKGROUND NOISE] PAY ATTENTION TO WHAT EXCITES YOU. [BACKGROUND NOISE] I CAN DO THIS ALL DAY AND NEXT WEEK WHEN I'M TRYING TO MAKE SOME BASIC DECISIONS ABOUT MY CAREER [BACKGROUND NOISE] BUT YOU HAVE TO LOOK AROUND AND THAT'S WHAT HAPPENED. TWO STORIES IN THINKING ABOUT THE ENVIRONMENT TURNED MY INTEREST. THERE ARE TWO TIMES [BACKGROUND NOISE] WHERE I UNDERSTOOD WHAT THE PROBLEM BETWEEN PEDIATRIC SYSTEMS AND ADULT SYSTEMS. ONE WAS I WAS TEACHING AS A FACULTY MEMBER AT GW BOTH AT CHILDREN'S NATIONAL HOSPITAL AS WELL AS GW AND ASKED WHETHER THE PEOPLE TAKING RHEUMATOLOGY WOULD WANT TO COME WITH ME TO THE ADULT SIDE [BACKGROUND NOISE] IN THE END I TOOK THEM OUT TO LUNCH AND ASKED THEM WHAT THEY LEARNED. WHAT THEY TALKED ABOUT AND WHAT I LEARNED [BACKGROUND NOISE] THEY'VE MADE A CHOICE. THEY WANTED TO BE A PEDIATRICIAN, THEY WANTED TO BE AN INTERNIST AND THEY HAD A HARD TIME THINKING ABOUT THE OTHER ASPECTS. THERE WAS SOMETHING ABOUT IT AND THE GAP IS GOING TO BE VERY HARD FOR YOUNG PEOPLE. ANOTHER TIME I WAS IN -- AND I AGAIN HAD AN OBSERVATION THINKING ABOUT A FIELD OF SPECIAL HEALTH CARE NEEDS AND WHAT IT MEANS AND WHAT THEY REALLY HAVE TO THINK ABOUT AND THE EXPECTATIONS PEOPLE DON'T HAVE FOR THEM. THAT REALLY FORMED MY THOUGHTS AND I BEGAN TO BE VERY INTERESTED IN THINKING ABOUT TRANSITION. SO COMBINING INTERESTS AND CREATING SOMETHING NEW. I HAD AN INTEREST IN PEDIATRIC AND ADULT RHEUMATOLOGY AND MAKING A CHANGE FOR YOUTH WITH SPECIAL HEALTH CARE NEEDS AND I PULLED IT TOGETHER AND STARTED TALKING ABOUT TRANSITION. [BACKGROUND NOISE] IT WASN'T ON ANYBODY'S MAJOR POINT TO THINK ABOUT IN TERMS OF POLICY AND CHANGE. SO I KEPT ON WITH MY CAREER KEEPING THAT IN MIND MAKING PLANS, THINKING OF SOLUTIONS. ANOTHER POINT THAT'S MADE A GREAT DIFFERENCE IN MY CAREER IS SEEKING GREAT COMMUNICATORS. I MEAN TEACHERS, ADVOCATES, LEGISLATORS. THESE ARE PEOPLE WHO KNOW HOW TO CHANGE PEOPLE'S MINDS IN A WAY AND I DID EYE -- A ROBERT WOOD HEALTH POLICY SCHOLARSHIP AND CHANGED WHAT I DID THE REST OF MY CAREER. I LEFT THE ASSOCIATE TEAM AND JUMPED AT THE WINDOW OF OPPORTUNITY THAT OPENED UP WHEN I APPLIED AND HAD THE CHANCE TO WORK IN THE SENATE AND FINANCE COMMITTEE. DURING THAT YEAR TO ERROR IS HUMAN REPORT CAME OUT FROM THE NATIONAL ACADEMY OF SCIENCE. THAT WAS AN AMAZING CHANGE OPENING UP SOME REAL BREAKTHROUGH OF THE CYCLE OF BEING SILENT AND ACTIVE AROUND BUILDING A SAFER HEALTH CARE DELIVERY SYSTEM. IN MY MIND I WAS INTRODUCED TO THE WORLD OF IMPROVEMENT AND I REALIZED THAT IS THE LANGUAGE I SHOULD BE USING TO TALK ABOUT HEALTH CARE TRANSITION. PEOPLE NEEDED A SAFE WAY TO MOVE FROM ONE SYSTEM TO THE OTHER. SO I FOUND IT STRAIGHTFORWARD WHEN THE OPPORTUNITY TO ACTUALLY DEVELOP A RESPOND TO AN RFP TO DEVELOP A NATIONAL CENTER I WAS LUCKY TO HAVE A GROUP OF PEOPLE AROUND ME WHO I WOULD WORK WITH TOGETHER. WE ALL BROUGHT STRENGTHS AND WE DEVELOPED THE NATIONAL CENTER. AT THE SAME TIME I THINK THE LANDSCAPE HAD CHANGED AS WELL WHICH HELP IN THIS WHICH IS PEOPLE WERE BEGINNING TO FOCUS ON YOUNG ADULTS, A HUGE GENERATION WAS COMING UP A LARGER ONE THAN THE BABY BOOMERS AND THEY REALIZED MANY WERE NOT HEALTHY AND A GOOD DEAL DUE TO PEDIATRICS WERE SURVIVING INTO ADULTHOOD AND IT WAS TIME FOR PEOPLE TO BEGIN TO THINK ABOUT THIS AND [BACKGROUND NOISE] MORTALITY WAS HAPPENING DURING THAT TIME. THAT SETS THE STAGE WHY I'M WORKING IN THIS FIELD AND A FIELD THAT'S TAKEN OFF IN THE PAST FIVE TO 10 YEARS AND TAKEN A LONG TIME BUT WELL WORTH IT. NOW LET'S THINK IT. WHAT IS PEDIATRIC DEVELOP HEALTH CARE TRANSITION. I LOVE TALKING ABOUT THIS. THE DEFINITION HERE IS JUST THE PROCESS OF MOVING FROM A CHILD TO ADULT MODEL OF HEALTH CARE. YOU MAY CHANGE YOUR CLINICIAN BUT NOT NECESSARILY THINK OF FAMILY PHYSICIANS. WHAT ARE THE GOALS AND WHAT DO WE WANT FOR YOUNG PEOPLE AND CLINICIANS? DO YOU WANT TO IMPROVE THE ABILITY OF YOUNG ADULTS TO NOT ONLY MANAGE THEIR OWN HEALTH BUT EFFECTIVELY USE HEALTH CARE SERVICES. THAT'S A BIG BRIDGE TO CROSS. THE OTHERS HAVE ORGANIZED PROCESS AND PEDIATRIC PROCESSES TO FACILITATE TRANSITION. MANY THINK OF TRANSITION AS THE MOMENT WHEN YOU TRANSFER. WHEN I TALK TO CLINICIANS, THEY SAY REALLY? I'M GOING START THIS PROCESS AT 12 AND GO TO AN ADULT PROVIDER? NO, WHAT WE'RE TALKING ABOUT IS A PROCESS THAT INCLUDES THREE MAJOR COMPONENTS PLANNING, TRANSFER AND INTEGRATION INTO THE ADULT HEALTH CARE SYSTEM. AND YOU PUT THEM IN THE PRACTICE AND AOFF -- OFF THEY GO AND THIS GAP IS ONE THAT FRIGHTENS EVERYBODY THAT HAS TO FACE IT ALONG THE WAY. THERE'S LOTS OF EVIDENCE ABOUT ADVERSE EFFECTS. THERE'S A LOT OF DATA NOW AND PUBLICATIONS. YOU CAN SEE THEM LISTED HERE FOR THE INCREASED MORTALITY AROUND SICKLE CELL DISEASE IS STRIKING BETWEEN AGES OF 15 AND 25. AS YOU WALK DOWN SOME OF THESE THERE'S A LOT OF DISSATISFACTION AND REPORTED IN DECREASE IN WELL BEING AND MEDICATION ADHERENCE AND GETTING LOST BETWEEN THE SYSTEMS THEREFORE CAUSING MORE COST TO THE SYSTEM. SO HOW ARE WE GOING AND FOR THE PAST COUPLE OF YEARS THERE'S A NATIONAL SURVEY OF CHILDREN'S HEALTH. WE ACTUALLY HAVE A SCORECARD WE CAN LOOK AT AND WORK TOGETHER TO IMPROVE. I'M SHOWING YOU THE TATE FROM 2018 TO 2019--THIS IS TATE. -- TATE. -- THIS IS DATA. 22.9% OF YOUTH RECEIVED TRANSITION GUIDANCE AND LESS WITHOUT SPECIAL HEALTH CARE NEEDS AND IF YOU THROW SOMEBODY IN THE BASEBALL GAME AND DON'T KNOW THE RULES IT PUTS THEM AT A DISADVANTAGE. SO PLANNING BECOMES THE FIRST STEP AND A VERY IMPORTANT ONE. YOU CAN SEE HERE THE QUESTIONS THAT ARE ASKED ON THE NATIONAL PERFORMANCE MEASURE THAT MAKE UP THIS TRANSITION MEASURE. AND IT'S TALKING ABOUT THE DOCTOR SPEAKING PRIVATELY TO THE WRONG PERSON ENCOURAGING THEM TO TAKE ON THEIR OWN HEALTH CARE DECISIONS. HAVING A DISCUSSION ABOUT GOING TO ADULT CARE. AND FINALLY THEY'RE WORKING WITH SKILLS. SO WE HAVE A LOT OF CHANCE TO IMPROVE HERE AND WE NEED SOME IMPROVEMENT. IT STARTED AROUND 18% AND WAS AVAILABLE TWO OR THREE YEARS AGO SO IT'S BEEN A SLOW MARCH FORWARD. SO IT'S THE EVIDENCE. PEOPLE ALWAYS ASK ME THIS, SO WHERE'S THE EVIDENCE FOR SOME KIND OF STRUCTURED PROCESS? I'VE BEEN INVOLVED IN TWO SYSTEMATIC REVIEWS AND THERE'S NOW BEEN OTHERS THAT SHOW A STRUCTURED TRANSITION PROCESS STATISTICALLY HAS SIGNIFICANT POSITIVE OUTCOMES AND MOST OF THESE STUDIES WERE DONE WITH YOUTH WITH SPECIAL HEALTH CARE NEEDS AND WE'RE LOOKING AT WHAT WE TALK ABOUT IS THE QUADRUPLE AIM, ADHERENCE TO CARE, HEALTH CARE SKILLS AND PEOPLE WANT IMPROVEMENT AND EXPERIENCE IN CARE AND SATISFACTION AND REDUCTION IN BARRIERS AND UTILIZATION. THERE'S MORE CONNECTIVITY BETWEEN THE PEDIATRIC AND ADULT SYSTEMS. MORE ENGAGEMENT IN THE ADULT SYSTEM OF YOUNG PEOPLE COMING ACROSS THIS BRIDGE AND THERE'S A DECREASE IN HOSPITAL ADMISSIONS AND LENGTH OF STAY. SO WE HAVE A NATIONAL SCORECARD. WHAT DID THE PROFESSIONAL SOCIETIES DO? IN 2011 I WAS INVOLVED IN THE FIRST CLINICAL REPORT AND PULLED TOGETHER THE AMERICAN ACADEMY OF PETE -- PEDIATRICS AND PHYSICIANS AND DEVELOPED EARLY GUIDELINES. YOU SEE THE MARCHING OF WHAT MIGHT DO ACROSS THE AGE RANGE AT AGE 12 TO 22. IT BENCHMARKS AND WAS SET OFF IN THE EARLY CLINICAL REPORT. THIS REPORT TARGETED ALL YOUTH BEGINNING AGE 12 AND A WAY TO THINK ABOUT IT BUT IF YOU HAD MORE COMPLEXITY AND YOUTH WITH SPECIAL HEALTH CARE NEEDS YOU'D CHANGE THIS TRAJECTORY AND HAVE MORE INTERVENTIONS. THEN APPLIED TO PRIMARY AND SPECIALTY PRACTICES AND INCLUDED THE TRANSFER TO AN ADULT MEDICAL HOME AND SPECIALIST. IN 2018 I HAD A CHANCE TO UPDATE AND WE BROUGHT THIS EARLY CLINIC REPORT WHICH IS MORE ABOUT THE PLANNING TO REALLY TALK ABOUT ALL THREE COMPONENTS OF TRANSITION AND BRING IN THE CONCEPT OF QUALITY IMPROVEMENT IMPLEMENTATION SCIENCE AND TO DEVELOP A PROCESS THAT PEOPLE COULD USE. SO WHAT ARE THE SIX CORE ELEMENTS? WELL, THEY'RE NOT A MODEL. THERE'S TOO MANY WAYS PEOPLE WILL THINK OF CROSSING THE BRIDGE. IT'S A PROCESS LIKE A ROAD MAP THAT'S CALLED FOR AND WHERE DID IT COME FROM? EARLY ON, I SPENT A LOT OF TIME THINKING ABOUT HOW I COULD TAKE SOMETHING LIKE A CLINICAL REPORT WHICH IS IN A SENSE A GUIDELINE OR GUIDANCE AND MAKE IT REAL ON THE GROUND FOR PEOPLE THAT WERE IN PRACTICES. SO WE HAD TO TEST THEM. WE DEVELOPED THEM AND WE TESTED THEM USING LEARNING COLLABORATES ACROSS THE COUNTRY IN URBAN, RURAL AND INNER CITY USING THE INSTITUTE FOR HEALTH CARE IMPROVEMENT BREAKTHROUGH, QUALITY IMPROVEMENT APPROACH AND SHOWED IT WE COULD DO IT AND IT DID IMPROVE THE PROCESS AND IMPROVED SOME OUTCOMES MENTIONED EARLIER. THE KEY POINT ABOUT THIS IS THE INTENSITY OF THIS INTERVENTION IS CLEARLY GUIDED BY MEDICAL AND SOCIAL COMPLEXITY AS WELL AS AVAILABILITY OF PRACTICE RESOURCE AND IS IT A HUGE SYSTEM OR ACADEMIC HEALTH CARE CENTER OR ARE YOU A SMALL PRACTICE IN AN AREA IN RURAL ALABAMA OR FLORIDA? SO IT'S NOW BEEN TESTED IN MODELS OF CARE AND MEDICAID MANAGED CARE AND PROFESSIONAL ORGANIZATIONS, STATE TITLE 5 AGENCY OFFER A LOT OF CARE COORDINATION SERVICES FOR YOUTH WITH SPECIAL HEALTH CARE NEEDS AND CHILDREN HOSPITALS AND FEDERALLY QUALIFIED CENTERS AS WELL AS BEHAVIORAL HEALTH CENTERS. THEY ALL INCORPORATED THE PROCESS IN THEIR OWN WAY AROUND SHOWED THEY CAN IMPROVE THEIR PROCESS. I WANT TO SHOW YOU HOW YOU MIGHT APPLY THIS IN YOUR SYSTEM OR URGE YOUR SYSTEM TO DO IT. THIS IS FROM THE WEBSITE AND THERE ARE THREE PACKAGES THAT APPLY TO WHAT A YOUNG PERSON IS DOING THAT A CLINICIAN, SOCIAL WORKER, WHOEVER CAN LOOK AT. THIS TRANSFERS A YOUTH THROUGH A CLINICIAN OR THROUGH THE LIFE SPAN TRANSITIONING TO AN ADULT APPROACH TO HEALTH CARE AND IF YOU'RE AN INTERNIST HOW DO BRING THAT YOUNG PERSON IN THE PRACTICE. YOU CAN DOWNLOAD ALL THESE TOOLS AVAILABLE IN SPANISH AS WELL AS CUSTOMIZE THEM. IT'S A NATIONAL CENTER FUNDED BY THE GOVERNMENT AND ALL THESE THINGS ARE FREE. HERE GIVES A SENSE OF THE PEDIATRIC ELEMENTS. WE TALKED TO FAMILIES, YOUTH, PROVIDERS AND SAID WHAT IS GOING TO MAKE IT EASY AND THEY SAID MAKE IT SIMPLE, EFFICIENT AND THINK ABOUT WHAT HAS TO HAPPEN. SO LOOKING AT THE PEDIATRIC SIDE AND I'LL WALK THROUGH THESE. YOU WANT SOMETHING TO SET THE ROAD MAP. THAT'S THAT GUIDE. YOU WANT TO FIND OUT IF PEOPLE ARE ACTUALLY GETTING THE SERVICE YOU DECIDE. YOU WANT TO SET UP THE SKILLS. YOU WANT TO DEVELOP THAT PLAN, DO THE EDUCATION THAT'S REQUIRED AND THEN THAT MOMENT OF TRANSFER OF CARE AND THEN YOU WANT TO GET FOLLOW-UP. YOU WANT TO SEE DID IT MAKE A DIFFERENCE? WAS THERE SATISFACTION? THIS IS A BUSY SLIDE BUT REMINDING THERE'S ROLES FOR PEDIATRIC AND ADULT PRACTICES. THIS LAYS OUT THE CORE ELEMENTS FOR EACH OF THE DIFFERENT SCENARIOS AND THERE'S DIFFERENT JOBS TO DO TO MAKE THIS PROCESS ONE OF CONTINUITY AND IMPROVED HEALTH. SO LET'S WALK THROUGH THEM QUICKLY TO GET A SENSE OF THEM. WHAT IS THE GUIDE? WE DEVELOPED THESE WITH FAMILIES AND THEY LIKED THIS ONE BEST BECAUSE IT GIVES A SENSE OF WHAT'S COMING. YOU WANT TO SHARE THIS WITH YOUR PATIENTS. IT'S A FORMALIZED APPROACH AND REDUCES CLINICIAN VARIABILITY. FAMILIES FOUND IT HARD THEIR WORKING WITH ONE PEDIATRIC PRACTICE SAY IN A CHILDREN'S HOSPITAL BUT SAYS YOU HAVE TO LEAVE AT 18 AND ANOTHER ONE SAYS YOU DON'T HAVE TO GO EVER. AND IT SPLITS THEM ACROSS SYSTEMS AND THEY HAVE TO FIGURE OUT WHO TO SEE WHEN AND THAT MAKES IT DIFFICULT AND IT INCREASES AS THE COMPLEXITY OF CARE AND NUMBER OF SPECIALISTS ARE INVOLVED. IT'S DEFINING THE APPROACHES AND CLARIFYING WHAT IT MEANS IN LEGAL TERMS AT CHANGE OF 18 DOES THIS YOUNG PERSON NEED DECISION MAKING SUPPORT AND ARE THEY AWARE OF THEIR RIGHT TO CONFIDENTIALITY. MAKE SURE PEOPLE CAN READ IT. PEOPLE DEVELOP THESE WONDERFUL STATEMENTS BUT THE READING LEVEL IS COLLEGE LEVEL. IT BUILDS CONSENSUS. EVERYBODY UNDERSTANDS WHAT'S EXPECTED AND AU -- AND YOU SHARE IT WIDELY AND NOT UP ON A SHELF AND ON A POSTER AND EVERYBODY KNOWS WHAT THEY'LL BE HELD ACCOUNTABLE FOR. TRACKING AND MONITORING IS STRAIGHTFORWARD. YOU SEE IF YOU DO IT AND MOST AMR'S WILL DO THIS BUT THERE'S OTHER OPTIONS TO THINK ABOUT WHAT THEY'LL OFFER AND WHETHER THEY DID IT OR NOT. ASSESSMENT. DEVELOPING DIFFERENT ASSESSMENTS BUT IT SHOULD BE NO MORE THAN ONE PAGE. IT'S STRAIGHTFORWARD TO ANSWER THE QUESTIONS. ASKING THE KEY THINGS HOW TO EFFECTIVELY USE HEALTH CARE. MANY OF THESE TOOLS ARE OUT THERE WE USED MOTIVATIONAL INTERVIEWING FOR IMPORTANCE AND IT'S MADE A HUGE DIFFERENCE IN THINK HOW TO IMPROVE OUTCOME. MOTIVATIONAL INTERVIEWING HAS BEEN ASSOCIATED WITH IMPROVED OUTCOMES WITH WEIGHT MANAGEMENT OR SURGICAL OUTCOMES. THIS IS A SENSE OF HOW THE YOUTH PERSON IS HANDLING THIS AS YOU GO FORWARD. THIS IS SHOWING WHAT OURS LOOKS LIKE. YOU CAN SCORE THIS BUT THE SCORE DOESN'T MATTER. CAN HAVE 100% AND STILL NOT HAVE THE BEST TRANSITION ACROSS TO THE ADULT SYSTEM. THERE'S MANY OTHER COMPONENTS TO THIS STRUCTURE. YOU CAN SEE HOW SIMPLE IT IS. THEY ANSWER THOSE MOTIVATIONAL INTERVIEWING QUESTIONS AT THE TOP AND THERE'S QUESTIONS ABOUT HEALTH AND HEALTH CARE AND IF YOU HAVE MEDICINE. YOU'RE LOOKING AT THE ONE FOR PARENTS AND CAREGIVERS AS ONE FOR YOUTH THAT CAN FILL IT OUT AS WELL. COMPARING THE ANSWERS IS ALWAYS VERY INTERESTING BONG ARE NOT SURE IF BOTH ARE NOT SURE IF THE OTHER PERSON KNOWS ABOUT THE PROCESS. TRANSITION PLANNING IS WHERE YOU PULL TOGETHER WHAT YOU KNOW ABOUT THE DISEASE AND TRANSITION PLAN YOU'RE GOING PUT TOGETHER. YOU WANT TO PUT IT IN TERMS THAT WILL MATTER TO THE YOUNG ADULT. YOU ASK MOST PARENTS THEY REALIZE THIS REALLY DOESN'T OCCUR UNTIL THEIR 20s. IF YOU DO THIS ACTION YOU MAY HAVE THIS CONSEQUENCE. YOU HAVE TO PUT THESE PLANS IN TERMS THAT A YOUNG PERSON WHO IS 16, 18 OR 20 THEY'LL TAKE HOLD OF THE RESPONSIBILITY ALONG WITH YOU IN THE JOINT DECISION MAKING PROCESS. THE KEY COMPONENT IS CREATE MEDICAL SUMMARY. ACROSS EVERY SURVEY THEY GET THIS KIND OF INFORMATION LESS THAN 20% OF THE TIME. THIS SAY BIG PART OF THIS PLANNING COMPONENT ALSO THE EDUCATIONAL NEEDS AND DEVELOPING THE EDUCATIONAL PROGRAMS THAT WILL HELP DEVELOP THE SKILLS AND KNOWLEDGE YOUNG PEOPLE NEED. I WANTED TO SHOW GOAL SETTING FROM KANSAS CITY NEARLY 5,000 YOUTH. THEY DEVELOPED WHAT THEY THOUGHT WERE THE MOST IMPORTANT THINGS FOR THEM TO DO AND WAS VERY INFORMATIVE AND FELT KNOWING THEIR HISTORY AND CONDITION THE YOUNGER FOLKS WANTED TO HAVE THAT ELEVATOR SPEECH, HOW CAN I DESCRIBE MY MEDICAL PROBLEM QUICKLY TO THE PEOPLE I'M GOING INTERFACE WITH. UNDERSTANDING THEIR MEDICATIONS AS THEY GOT OLDER THEY BEGAN TO FOCUS ON THAT AND BETWEEN 18 AND 21 BEGAN TO THINK ABOUT THE ISSUES OF INSURANCE AND KNOWING HOW TO REACH OUT TO PROVIDERS AND THEN FINALLY HOW DO I FIND THAT PROVIDER. THESE ARE PRETTY STRAIGHTFORWARD THINGS TO ASK FOR AND THINGS THE SYSTEMS BEGIN TO WORK ON AND YOU CAN DO THIS BROADLY ACROSS SYSTEMS WITH VIDEOS. THERE'S MANY WAYS TO HELP YOUNG PEOPLE THINK ABOUT THESE GOALS. THE CONTROVERSY -- TRANSFER OF CARE IS THE MOMENT OF TRUTH THE WARM HAND OFF. AN EVEN IN CONSULTATIONS IT'S ALWAYS FRAUGHT WITH PROBLEMS SO WE TRIED TO PUT TOGETHER A TRANSFER CHECKLIST. A TOOL ONE DAY WE BORROWED VERY MUCH FROM A LOT OF HIS WORK SAYING IF YOU DON'T HAVE A CHECKLIST YOU OFTEN HAVE PROBLEMS WITH THE QUALITY OF CARE. WE HAVE A NICE CHECKLIST FOR PEOPLE TO THINK ABOUT. YOU WANT TO COMMUNICATE DIRECTLY. THE NEED FOR A WAY TO TALK TO THE ADULT PROVIDER WHETHER THROUGH JOINT CLINICS OR NOW, THE COVID HAS MADE A HUGE DIFFERENCE IN JOINT TELEHEALTH VISITS BECOMING MORE IMPORTANT THE MORE I THINK COMPLEX THE YOUNG PERSON IS IN THEIR MEDICAL NEEDS. AND CLARIFYING THE ROLES. WHEN DOES THE RESPONSIBILITY OF THE PEDIATRICIAN END AND THE ADULT PROVIDER TAKE ON SO THE FAMILY'S CLEAR WHO TO GO TO IN THE INTERVENING PERIOD. YOU WANT TO NOT TRANSFER ALL THE CARE EVEN WITH FIVE OR SIX SUB SPECIALISTS WITH A PRIMARY CARE PROVIDER. WANT TO STAGGER THE TRANSITIONS AND DO IT WHEN THE YOUNG PERSON IS AS STABLE AS POSSIBLE. LASTLY, THAT COMPLETION. CHECK IN. THAT PEDIATRIC PRACTICE OUGHT TO KNOW IF A YOUNG PERSON MADE IT. YOU BOTH HAVE AN INVESTMENT BEING THE BOTH OF THE SIDES OF THE BRIDGE GETTING THE YOUNG PERSON TO NEW CARE MAKING IT EASY FOR THE ADULT PROVIDER AND OPEN THE CONVERSATION WITH THE YOUNG PERSON. THESE SEEM LIKE NATURAL THINGS THAT WE WOULD DO IN A LOT OF THE COMMUNICATIONS BUT SOMEHOW FALLS DOWN WHEN YOU DEAL WITH LARGE SYSTEMS AND PEOPLE HAVE TO CROSS THEM. OBTAINING THE YOUNG ADULT FEEDBACK IS REALLY IMPORTANT. IT'S ONE THING THE INTEGRATED SYSTEMS WANT. THEY WANT SATISFACTION WITH THE CARE THEY DELIVER. HAVING THIS AS PART OF IT VERY IMPORTANT WE HAVE EXAMPLE FEEDBACK SURVEYS. THE NEXT QUESTION WE HAD TO DEVELOP IS HOW DO YOU ASSESS WHERE YOU ARE IN THE PROCESS. THE CURRENT ASSESSMENT OF TRANSITION HEALTH CARE ACTIVITIES TAKES THE CORE ELEMENTS AND DEVELOPS LEVELS AND PEOPLE SAY READ IT AND SAY THAT'S WHERE I AM OR WHERE MY PRACTICE IS. IT'S VERY EASY TO FILL OUT AND VERY QUICK AND THE BEST THING ABOUT IT IS AN EDUCATIONAL TOOL. PEOPLE LEARN WHAT THE GOALPOST IS AND PEOPLE IN MEDICAL SYSTEMS AND MEDICAL CARE REALLY WANT TO DO THE BEST. SHOWING WHAT IS THE BEST IS A GOOD COMPONENT OF EDUCATING ANYBODY AND MAKING AN IMPROVEMENT IN PROCESS. IF YOU'RE GOING TO DO A VERY DETAILED IMPLEMENTATION SCIENCE OR QUALITY IMPROVEMENT WE HAVE A PROCESS MEASUREMENT TOOL THAT DOCUMENTS EVERYTHING VERY CAREFULLY SO THAT YOU CAN SCORE PEOPLE. WE HAVE A FEEDBACK SURVEY BASED ON THE MEDICAL HOME FEEDBACK SURVEY GIVING CLINICIANS IN THE PROCESS GOING THROUGH THIS TRYING TO MAKE THE CHANGES IN THEIR SYSTEM AND PRACTICE IS IT WORKING OR BETTER? DO THEY THINK THE QUALITY OF CARE AND SAFETY HAVE BEEN IMPROVED? ALSO THERE IS SAMPLE YOUTH FEEDBACK SURVEY. THESE WERE ALL UPDATED AND PUT OUT IN 2013. WE UNDERWENT A HUGE RERAMPING OF THEM WITH ADVICE FROM HUNDREDS OF PEOPLE OVER A SIX MONTH PERIOD. THE SIX CORE ELEMENTS HELD UP. EVERYBODY HAD TWEAKS IN THE SURVEY. THEY'RE AVAILABLE. PEOPLE DO NOT HAVE TO REINVENT THE WHEEL AND THAT'S WHAT IT'S ABOUT IN TRYING TO INCORPORATE SOMETHING INTO SYSTEMS THAT ARE BUSY OVERLOADED AND WE'RE NOW ALL IN THE MIDDLE OF COVID. WHAT I LEARNED IN THE FIRST FIVE YEARS IS I NEEDED TO CREATE AN IMPLEMENTATION GUIDE. THIS WAS HARD. I SPENT TIME TALKING TO MANY PEOPLE IN THE PROCESS. IF YOU GO TO OUR WEBSITE I IMPLEMENT THE SIX CORE ELEMENTS AND I'LL SHOW THESE. THERE'S EVEN A QUALITY IMPROVEMENT PRIMER THAT USES ONLY EXAMPLES FROM THE HEALTH CARE TRANSITION ARENA. YOU'RE NOT ASKING PEOPLE TO CONNECT THE DOTS. YOU'RE CONNECTING THEM FOR THEM SO THEY CAN TAKE THE NEXT STEPS. THESE HAVE THE STEPS TO THINK ABOUT IF YOU'RE GOING TO UNDERTAKE THIS WHETHER YOU'RE A SMALL PRACTICE OR HUGE SYSTEM AS THEY DECIDE TO TAKE ON THIS PROCESS. WE HAVE EACH OF CORE ELEMENTS. WE HAVE A GUIDE TO IMPLEMENT. YOU DON'T HAVE TO DO ALL OF THEM CHOOSE JUST ONE AND WE HAVE A GUIDE IN EXAMPLES YOU CAN GO TO VERY QUICKLY AND THESE GUIDES GIVE YOU WHAT THE POINT IS OF THIS CORE ELEMENT, WHAT THE OBJECTIVES ARE AND WHAT IS THE PROCESS YOU SHOULD UNDERTAKE. WHAT'S THE QUALITY IMPROVEMENT APPROACH AND GIVE YOU TOOLS AND WEIGHS TO MEASURE ARE YOU DOING WHAT THEY WANT YOU TO DO AND THERE'S SAMPLE EXAMPLES OF THIS. THIS IS JUST SHOWING THE QI TOOLS AND HOW DO YOU DO A NAME STATEMENT AND HOW DO AGREE ON WHAT YOU'RE TRYING TO DO? WHAT ARE THIS THINGS YOU NEED TO CHANGE AND PROCESS YOU NEED TO CHANGE AND DOING A LOT OF THESE PDSA CYCLES. THEY'RE ALL THERE AND HAVE EXAMPLES AN ARE THERE FOR EACH OF THE SIX CORE ELEMENTS. PEOPLE SEND ME ALL THE TIME THE THINGS THEY'RE CUSTOMIZING. WHAT OUR FREE EXAMPLE TOOLS ARE. WE HAVE VIDEO FORMATS. I THINK A LOT OF ISSUES AROUND POLICIES IS HAVING A GOOD READING LEVEL WE HAVE A WAY TO THINK ABOUT THAT AND WE ARE COMMUNICATION AND DEPARTMENTS WHICH HELPS TO DROP THE READING LEVEL WHICH NATIONALLY HAS TO BE FIFTH OR SIXTH GRADE. AND THEN THERE'S THE QUALITY PRIMER. MANY PEOPLE WHO GO TO IHI AND THEN HAVE A HARD TIME CONNECTING IT THIS SAY -- IS A QUICK WAY FOR PROVIDERS TO LEARN MORE ABOUT THE TOOLS AND HAVE EXAMPLES RELATED TO HEALTH CARE TRANSITION. SO PART OF THIS INSTITUTING MUCH CHANGING AND BRINGING TWO SYSTEMS TOGETHER WAS DEVELOPING WAYS TO MAKE IT EASY FOR PEOPLE TO ADOPT IT, CUSTOMIZE IT AND WORK IN THEIR PARTICULAR SETTING FOR THE DIFFERENT COMPLEXITIES OF THE PATIENCE AND RESOURCES THAT WERE AVAILABLE. MOST PEOPLE LOOK AT TRANSITION AS A MAZE. IT'S TOO HARD. IT'S COMPLICATED. I DON'T HAVE TIME TO FIND THE ADULT PROVIDERS IF I'M A PEDIATRIC PRACTICE. THERE'S A PROGRAM FROM THE NIH I'M EXCITE ABOUT LED BY PATRICIA DRISCOLL AND IT TAKES TIME AND TAKES WORK TOGETHER. I'M SHOWING YOU THE FIRST ONE WE DID. I PULLED TOGETHER THIS IS AFTER THE SIX CORE ELEMENTS. I HAD SEVEN SYSTEMS THAT APPROACHED ME AND SAID THEY WANTED TO THINK ABOUT THIS. I SAID, ALL RIGHT, LET'S WORK TOGETHER. THEY ALL TOOK THE CURRENT ASSESSMENT AND THEY WERE ALL ON THE BOTTOM OF IT AND THEY ALL UNDERTOOK CHANGE. VERY DIFFERENT, VERY DIFFERENT MODELS AND THEN WE REPEAT THE CURRENT ASSESSMENT EVERY YEAR AND WE WORKED AT IT FOR ABOUT 18 MONTHS. THEY ALL MADE IMPROVEMENTS AND WE PUBLISHED OUR WORK. THE SYSTEMS ARE VERY DIFFERENT AND LED BY DIFFERENT PEOPLE. IT CAN BE NURSES, SOCIAL WORKERS, PHYSICIANS OR PEDIATRIC OR EVEN INTERNIST. YOU CAN SEE THE MILITARY PART ARE OF OUR GROUP AT CHILDREN'S HOSPITAL AND LARGE SYSTEMS AND UNIVERSITY SYSTEMS. THIS IS AN INTERESTING MULTI SITE PROJECT. A PCORI FIVE YEAR GRANT AROUND SERVING THE POPULATION OF YOUNG ADULTS WITH SICKLE CELL DISEASE. THE GOAL IS TO DEMONSTRATE ACROSS 14 SITES BOTH PEDIATRIC AND ADULT IN THE SOUTHEAST REGION THEY CAN PUT IN THE SIX CORE ELEMENTS AS THE BACKGROUND AND THEN COMPARE IT TO AN INTERNET-BASED MENTORING PROGRAM. OUR GOAL WAS TO HAVE ALL 14 SITES IN DIFFERENT SETTINGS TO PUT IN THE SIX CORE ELEMENTS AND HAVE YOU THE COMMUNITY-BASED ORGANIZATION. THEY'RE OFFLOADING THE EDUCATION AND KEEPING IN TOUCH WITH YOUNG PEOPLE ACROSS THIS BRIDGE WHICH I THINK IS A WONDERFUL WAY TO BRING IN THE COMMUNITY INTO THIS KIND OF RESEARCH. AND THEY MOVED WELL FORWARD. THEY HAD TO DOCUMENT EVERY SIX MONTHS AND DEMONSTRATING THE PROCESS AND SHOWING THE PROCESS WAS MOVING FORWARD ROUGHLY AT 60% TO 80% OF THE TIME. AND THEY CAN NOW SHOW EVERYBODY HAS ROUGHLY THE SAME BASELINE IN TERMS WHATEVER THEY OFFER IN THEIR SYSTEM IN TERMS OF THE SUPPORT AND THEN THEY'RE GOING TO ASK DOES MENTORING MATTER AND CAN BE DONE ON AN INTERNET BASIS. THE KEY LESSONS WE LEARNED IN THE TWO STUDIES EARLY ON YOU CAN DO THIS. AND WE KNEW WE HAD TO HAVE EVERYBODY DANCING TOGETHER. A LOT OF PEDIATRIC PRACTICES WANT TO START THIS AND I'M ALWAYS SAYING WHERE'S THE ADULT PARTNER AND I'M ALMOST LIKE A MAJOR COUNSELOR AND TRYING TO BRING TWO VERY DIFFERENT SYSTEMS TOGETHER THAT HAVE ASSUMPTIONS ABOUT EACH OTHER AND AREN'T NECESSARILY TRUE. A KEY THING WHEN YOU'RE DEALING WITH BIG SYSTEMS IS BE SURE THIS PROCESS OF DEVELOPING A TRANSITION APPROACH IS PART OF A LARGER STRATEGIC PLAN AND THE LEADERSHIP IS THERE AND REALLY INTERESTED IN IT GOING FORWARD. MAKE SURE YOU HAVE A GOOD TEAM AND THAT PARENTS AND PATIENTS ARE A PART OF IT. THEY HAVE A STAKE IN THIS AND THEY'LL KEEP YOU HONEST IN THE PROCESS. I FIND THIS QUOTE THAT COMES UP A LOT OF WHEN SYSTEMS ARE GOING TO JUST START WITH A PILOT, WHICH MOST DO AND EVERYBODY SAYS CHOOSE YOUR PILOT PROJECT WISELY BECAUSE THE REST OF THE SYSTEM IS WATCHING. I'M WORKED WITH INTERMOUNTAIN HEALTH AND THIS HAS COME UP A LOT AS THEY BEGIN TO CHOOSE WHO WILL TAKE ON THE PROCESS AND SHOW OTHERS HOW IT CAN BE DONE. ALWAYS MAKE SURE YOU HAVE YOUR EVALUATE AND THE MODELS ARE VERY DIFFERENT EVERYWHERE AND THAT'S THE BEAUTY AND IT'S CUSTOMIZABLE AND THERE'S A WONDERFUL PROJECT AT NAIMS AND THERE WAS WORK UP FRONT ASKING DID THEY NEED SUCH A PROGRAM AND THEY CERTAINLY DID LEARN THERE WAS MANY KNOWLEDGE DEFICITS. ALMOST 25% OF THE PARTICIPANTS DIDN'T FEEL THEY HAD ANY PLANNING PROCESS AND THEN 40% FOUND THEMSELVES ON THE ADULT WARD NOT KNOWING THAT'S WHERE THEY WERE HEADED WHEN THEY CAME IN THE HOSPITAL. THEY DECIDED THEY PERHAPS NEEDED A STRUCTURED APPROACH AND LEADERSHIP WAS INVOLVED AND AGREED. THEY'RE SET TO DO A GREAT PROJECT HERE I LOVE THE NAME LEVEL UP. THEY'LL WORK WITH AGES 13 THROUGH 27. IT'S UNIQUE IN THAT THE CLINIC SEES ALL AGES BUT PEOPLE HAVE TO TRANSITION IN THEIR PRIMARY CARE FROM WHERE THEY LIVE BECAUSE PEOPLE COME FROM ALL NEVER COUNTRY TO GET THE EXCELLENT CARE OFFERED AT THIS CLINIC. HERE'S THE AIM. I HAVE A STAR BECAUSE COVID HAS HAPPENED AND YOU RELOOK AT YOUR AIMS AND LOOK AT WHAT'S REASONABLE AND THEY WANT THESE YOUNG PEOPLE TO HAVE A TRANSITION STATEMENT TO KNOW WHAT'S COMING. THEY'LL DO THE KIND OF READINESS ASSESSMENT, HAVE THAT PLAN AND REALLY DO THE EDUCATION THAT THEY FEEL IS REQUIRED. THEY'RE OUTCOMES ARE DUE IN AN ANNUAL REVIEW TO SEE HOW MANY PEOPLE DO IMPROVE IN THEIR EDUCATION AND THIS KIND OF OUTCOME WILL MOVE FORWARD, WILL MOVE UP. THERE'S AN INTERIM GOAL AND SOME WILL HAVE THE PRIMARY CARE PROVIDER WHO CARES FOR ADULTS. BECAUSE EVERYBODY DEPENDS WHEN THEY LEAVE THE WONDERFUL SERVICES OF THE NIH GOING BACK TO THEIR LOCAL THEY MAKE THIS TRANSITION PROFESSION. SO THESE ARE THE -- PROCESS. THESE THE KINDS OF EDUCATIONAL TOPICS THEY WORKED WITH THEIR YOUTH TO FIGURE OUT WHAT THEY NEEDED TO DO AND DOING IT IN WHATEVER FORMAT WILL WORK BEST FOR YOUNG ADULTS. YOU'RE SEEING VIDEO. I'M EXCITED ABOUT THIS. I THINK THERE'S A LOT OF OPPORTUNITY. THEY'RE IN A FISH BOWL AND OTHERS WILL WATCH TO SEE IF THIS IS SOMETHING THEY'LL TAKE ON IN THIS ENVIRONMENT. THERE'S A LOT OF FERVOR OUT THERE BUT THIS IS WHERE WE ARE IN TRANSITION IN TERMS OF UNDERSTANDING WHAT NEEDS TO BE DONE AND BUILDING THE TRACKS AS WE GO DOWN IT AND IT'S EXCITING SO IT'S A GREAT PLACE. THERE'S LOTS OF OPPORTUNITY IN RESEARCH. IN THE CLINICAL RECOMMENDATIONS OF THE REPORT WE OUTLINED A LOT OF THESE. A LOT OF THESE ARE OBVIOUS AND SHOWS THE GREAT OPPORTUNITY THERE IS TO DO RESEARCH. FIRST IS TO BEGIN TO INCORPORATE ALL THREE COMPONENTS WHEN YOU'RE GOING STUDY THE PROCESS. AND EVALUATE BOTH PROCESS AND OUTCOME. THINK ABOUT THE QUADRUPLE AIM. THINK OF WHAT MATTERS WITH YOUNG PEOPLE AND RISK STRATIFICATION IS IMPORTANT AS YOU LOOK AT THE PROCESS. WHICH OF THE ELEMENTS MATTER? WE ACTUALLY DON'T KNOW. WE USED ALL OF THEM AND ALL THE STUDIES BUT MAYBE YOU GET AWAY WITH FEWER OF THEM AND HAVEN'T QUITE GOT CONSENSUS ON WHAT THE OUTCOME SHOULD BE. WE KNOW PROCESS OUTCOMES BUT WHAT ARE THE REAL LONG TERM OUTCOMES? THAT'S THE QUALITY MEASURES WE NEED TO THINK ABOUT. HERE'S EXAMPLES PEOPLE ARE BEGINNING TO THINK ABOUT AND POPULATION HEALTH YOU CAN SEE THEM HERE. WHAT CAN YOU SAY SAYING THE PROCESS YOU WENT THROUGH MATTERED IN HOW THEY DID AND EXPERIENCE OF CARE BOTH FAMILY, USE AND CLINICIAN AND WHAT ABOUT UTILIZATION AND COST. THIS COMES UP ALWAYS PARTICULARLY WHEN DEALING WITH BIG INTEGRATED HEALTH CARE DELIVERY SYSTEMS AND YOU CAN SEE THESE ARE SOME THINGS COMING FORWARD FOR PEOPLE TO THINK ABOUT AND KNOW THEIR BASELINE DATA ABOUT. HOW LONG DOES IT TAKE PEOPLE TO LEAVE ONE PART OF YOUR SYSTEM AND GET TO THE OTHER? IS IT A YEAR? IS IT THREE YEARS? WE KNOW THE BEST OUTCOMES OCCURS WITHIN SIX MONTHS. THAT WE KNOW. YOU CAN FOLLOW E.R. VISITS AND URGENT CARE VISITS GO UP WHEN PEOPLE PERCEIVE THEY DON'T HAVE SOMEONE TO CONNECT WITH AND DO THEY GET TO THAT PRIMARY CARE VISIT? YOU WANT TO FOLLOW WHETHER THE HOSPITALIZATION VISITS GO DOWN, READMISSIONS GO DOWN DURING THIS PERIOD OF TIME AND COSTS OF CARE AND RETURN ON INVESTMENT WILL BE A BIG ISSUE AND WE'RE WORKING WITH LOTS OF INSURANCE CONDITIONS AND GET CLEAR EVIDENCE AROUND ROI. HERE'S MORE. THERE ARE OTHER THINGS GOING ON IN THEIR SOCIAL LIVE OF AN 18-YEAR-OLD AND HOW DO IMPROVE THAT HEALTH LITERACY? YOU WANT TO SET THE NEXT GENERATION THE LARGE MILLENNIAL GROUP AND THOSE FOLLOWING THEM TO BE MORE HEALTH LITERAL THAN THE CURRENT 50 AND 80-YEAR-OLDS ARE OUT THERE AND FOCUS ON MULTIPLE CONDITIONS. HOW CAN YOU INVOLVE PARENTS AND YOUNG ADULTS THROUGH THE PLANNING PROCESS. SO YOU'RE ASKING THE RIGHT RESEARCH QUESTION THAT MATTERS TO THEM. LOOKING AT HOW YOUNG PEOPLE UTILIZE THE SYSTEM AND WHY IS IT THEY OFTEN DISAPPEAR AND SHOW UP SOMETIMES 20 YEARS LATER IN THE SYSTEM. HOW DO YOU IMPROVE THE LEARNING? HOW DO YOU HELP PROVIDERS LEARN ABOUT THIS AND YOUNG PEOPLE AND PARENTS? TELEHEALTH HAS BEEN A WONDERFUL THING FOR CONNECTING TO YOUNG ADULTS. I YOU'D TO HAVE KNOW SHOW AROUND 50% WHICH IS THE NATIONAL AVERAGE FOR YOUNG ADULTS SHOWING UP AT THEIR APPOINTMENTS, NOW THEY ALL SHOW UP. SURE, AM I HAVING AN APPOINTMENT WEN THEY'RE ON THE BEACH OR IN THEIR CAR, HOPEFULLY NOT DRIVING? IT WORKS AS LONG AS THEY'RE OKAY WITH THE CONFIDENTIALITY, I'M OKAY WITH IT AND THEY COME AND WE HAVE A CHANCE TO THINK ABOUT THIS PROCESS AS THEY'RE MOVING FORWARD. THE ROLE IN THE COMMUNITY NEEDS TO BE STUDIED IN THE PCORI GRANT AND THERE'S PROCESSES TO HOW TO MAKE IT EASIER ON THE MEDICAL SYSTEM AND ENGAGE PEOPLE MORE THAT HAVE A LOT OF LACK OF TRUST OVER THE MEDICAL CARE SYSTEM. GETTING THESE HEALTH CARE MEASURES IN THE CORE MEASURE SETS, NATIONAL QUALITY FORUM, THINKING ABOUT IN TERMS OF LONG-TERM OUTCOME TO LOOK BACK AND NOBODY HAS REALLY DEVELOPED THE LONG TERM SYSTEM AND SURPRISINGLY WE DON'T HAVE A NATIONAL HEALTH SURVEY THAT INCLUDES YOUNG ADULTS WHICH IS ALWAYS AMAZING TO ME THAT IT'S NOT AVAILABLE AND WE'D LIKE TO HAVE THAT. I APPRECIATE PEOPLE'S TIME AND I COVERED CONCEPTS HOW THIS IS PUT INTO PRACTICE AND TALKED ABOUT RESEARCH OPPORTUNITIES. I HOPE YOU'RE ONE OR TWO OF THESE FOLKS PICTURED HERE AND HAVE ENJOYED THE PRESENTATION. THANK YOU SO MUCH. >> THANK YOU, DR. WHITE. WE APPRECIATE THE PRESENTATION. WE'LL WAIT FOR ANY QUESTIONS IF THE AUDIENCE. WE'RE INTERESTED IN A GRADUATE MEDICAL ATTENTION AND ACGME HAS CREATED SOME COMPETENCIES, ONE IS SYSTEMS-BASED PRACTICE AND PART OF SYSTEMS-BASED PRACTICE A SUB COMPETENCY IS THAT RESIDENTS AND FELLOWS MUST DEMONSTRATE CONFIDENCE IN COORDINATING PATIENT CARE ACROSS THE HEALTH CARE CONTINUUM AND BEYOND AS RELEVANT TO THEIR CLINICAL SPECIALTY. MY SENSE IS THESE ARE NICE WORDS BUT I'M NOT SURE THEY'RE BEING IMPLEMENTED EFFECTIVELY IN RESIDENCY TRAINING PROGRAMS ACROSS THE COUNTRY. I'M WONDERING YOUR THOUGHTS IN REGARDS TO TEACHING THIS PROCESS AND WHETHER THREES -- THERE'S THE NEED TO FOCUS MORE ON THE FOLKS IN TRAINING WITH RESPECT TO DEVELOPING THESE SKILLS, FOCUSSING ON QUALITY IMPROVEMENT PROCESS DEMONSTRATE THE ABILITY TO DO THIS AND THEREFORE MOVING THE PROCESS FROM THE FRONT LINES WHERE THE PRACTICE IS TO THE PIPELINE HOPEFULLY WHERE THE PRACTITIONERS WILL COME FROM. >> GOOD QUESTION AND ABSOLUTELY, I'VE BEEN TRYING TO WORK WITH THE RESIDENCY DIRECTOR ASSOCIATIONS AND START WITH A TO SEE HOW MANY ARE THINKING ABOUT THE PROCESS. IT'S A GREAT OPPORTUNITY TO TAKE ON ONE ASPECT. RESIDENTS HAVE COME TO ME AND SAID, WELL, WE DON'T HAVE THIS. I SAID WHY DON'T YOU DESIGN A POLICY. TRY IT OUT. WHEN THEY LEAVE THE POLICY BEHIND THE PRACTICE IS SUDDENLY SAYING I THINK WE WANT TO TAKE ON THIS PROCESS. OCCASIONALLY THEY TURN TO THE RESIDENTS AND SAY HOW ARE WE GOING TO DO THIS? IT'S ALWAYS A WONDERFUL THING AND I GET A LOT OF E-MAILS FROM EXACTLY THAT, HOW DO I DO THIS? WHERE DO I START? I SAY FIRST TALK TO YOUR RESIDENCY PROGRAM DIRECTOR AND SAY IF YOU'RE GOING TO UNDERTAKE THIS, WHAT DOES SUCCESS LOOK LIKE FOR THE PROCESS BEYOND MY WORK. THEN EVERYBODY'S IMBUED WITH MORE ENTHUSIASM AND PEOPLE HAVE A GREATER STAKE ON IT. THE ANSWER TO YOUR QUESTION IS IT'S A GREAT OPPORTUNITY. AND USING THIS AS A VEHICLE SAY PERFECT OPPORTUNITY. AND I THINK IT'S BEGINNING I HAVE PEOPLE INTERESTED IN DEVELOPING CURRICULUM AND WHEN I WAS DOING ANY MASTER'S EDUCATION I WORKED ON DEVELOPING CURRICULUM BUT DIDN'T DO IT AROUND TRANSITION AT THAT TIME BUT I THINK YOU'LL SEE IT AND I ENCOURAGE IT. HAVE YOU THE PERFECT OPPORTUNITY AT THE NIH SO I'M HERE, I'D LOVE TO HELP YOU. GO FOR IT. >> WE CAN ALL USE FACULTY DEVELOPMENT. WE HAVE ONE QUESTION BEFORE WE END. MY PREVIOUS POSITION AT UNIVERSITY OF MARYLAND WE STRUGGLED IN TRANSITIONING KIDS FROM THE HIV PEDIATRIC CLINIC TO ADULT CLINIC AND MISSED THE MORE NURTURING ENVIRONMENT OF THE PEDIATRIC CLINIC AS A RESULT NOT FOLLOWING UP IN THE ADULT CLINIC. AS I WAS LEAVING WE WERE IMPLEMENTING A SPECIALIST TO ASSIST IN THE TRANSITION. I DON'T KNOW HOW WELL THAT WORKED SINCE I LEFT BUT WOULD HAVE YOU ADVICE IN HOW WE ADDRESS THAT ISSUE? >> GREAT QUESTION AND HIV IS CLEARLY ONE OF THOSE MAJOR ISSUES AND FINDING ADULT PROVIDERS IS THE FIRST QUESTION. LUCKILY THEY HAD AN ADULT PROVIDER THEY COULD WORK WITH. SO BEFORE YOU EVEN DO ANYTHING, YOU NEED TO SIT IN THE ROOM TOGETHER. YOU NEED TO BRING OVER SOMEBODY FROM THAT ADULT CLINIC AND YOU HAVE TO HAMMER OUT SOME OF THE ISSUES ABOUT HOW PEOPLE TREAT THIS DISEASE FAMILIES FEEL HIT OVER THE HEAD SIDE WAYS SO WORKING TOGETHER IS IMPORTANT AND UNDERSTANDING THE EXPECTATIONS OF THE SYSTEM SO THEN YOU CAN REALLY TALK TO PEOPLE. GETTING AN ADOLESCENT PHYSICIAN OR SOMEBODY [INDISCERNIBLE] IS OFTEN A WAY TO MAKE THE BRIDGE BUT IF YOU CAN GET PEOPLE IN THE SAME ROOM YOU CAN GET THEM TO START TALKING ABOUT WHAT IS THE EVIDENCE-BASED PRACTICES WE ALL DO. OF THE SWEN -- OFTEN, OUR PRACTICES THIS IS WHAT I DID WHETHER IT WAS EVIDENCE BASED OR NOT AND HELPING THE YOUNG PERSON KNOW THE WORLD OUT THERE OF THE ADULT HEALTH CARE SYSTEM IS DIFFERENT. IT DOESN'T MEAN IT'S BAD JUST DIFFERENT AND IN THE LONG RUN DO WE WANT TO MAKE IT MORE LIKE THE PEDIATRIC SYSTEM, I DON'T KNOW. BUT THEY'RE WARNED AND THEY'RE SUDDENLY IN THE ADULT SYSTEM THAT TREATS THEM DIFFERENTLY DESPITE THE NATURE OF THE PRESSURES AND CULTURE OF THE TWO DIFFERENT SYSTEMS. SO THAT'S THE FIRST STEP. THE FIRST STEP IS TO REALLY GET THOSE FOLKS IN THE RUNG AND TALK ABOUT THE DIFFERENCES BECAUSE ONCE EACH UNDERSTANDS THE OTHER AND WALKS IN THEIR SHOES SLIGHTLY, THEY'LL BE BETTER AT ACTUALLY MAKING THE TRANSITION WITH THE YOUNG PERSON I HOPE I ANSWERS YOUR QUESTION. THANK YOU. >> YES, THANK YOU VERY MUCH AND THANK YOU AGAIN FOR THE PRESENTATION AND WE LOOK FORWARD TO HEARING MORE ABOUT YOUR WORK AND EXAMPLES OF SUCCESSFUL PROGRAMS FOR THE PROCESS OF TRANSITION. HAVE A GOOD AFTERNOON. >> GREAT, THANK YOU. BYE-BYE.