health care transition cme presentation slides
TRANSCRIPT
April Barbour, MD Billie Downing, MD Kirsten Hawkins, MD, MPH Peggy McManus, MHS Nathalie Quion, MD Lisa Tuchman, MD PaBence White, MD, MA
HEALTH CARE TRANSITION FOR ADOLESCENTS AND YOUNG ADULTS
APRIL 26, 2012
Faculty Disclosure Informa3on
• In the past 12 months, we have had no relevant financial rela3onships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME ac3vity.
• We do not intend to discuss an unapproved/inves3ga3ve use of a commercial product/device in this presenta3on.
Agenda 6:30 -‐ 7:00 Dinner 7:00 -‐ 7:05 Welcome & IntroducBons
Cyd Campbell, MD, FAAP 7:05 -‐ 7: 25 The New AAP/AAFP/ACP Health Care TransiBon Report: How It Applies to Your PracBce
Pa3ence White, MD, MA 7:25 -‐ 7:35 Q&A 7:35 -‐ 8:10 Making TransiBon Happen in Your PracBce:
Pediatric, Family Medicine and Internal Medicine PerspecBves — A Panel Discussion: Lisa Tuchman, MD ▪ April Barbour, MD Billie Downing, MD ▪ Kirsten Hawkins, MD, MPH Nathalie Quion, MD
8:10 – 8:25 Q&A 8:25– 8:30 Closing Remarks & EvaluaBon
Peggy McManus, MHS
Par3cipants will be able to: • Learn about the core elements for implemen3ng the new clinical
report and algorithm developed jointly by the AAP/AAFP/ACP to improve health care transi3on for youth and families
• Learn about quality improvement strategies, tools, and resources
used by pediatric, family medicine and internal medicine prac3ces par3cipa3ng in the DC Transi3on Learning Collabora3ve and how to implement them in your prac3ce
• Become familiar with local resources for transi3on support
Learning Objec3ves
The New AAP/AAFP/ACP Health Care TransiBon Report: How It Applies to Your PracBce
Pa3ence White, MD, MA
Opening QuesBons About Your TransiBon
• What do you remember about your adolescent/young adult years and health care-‐ when did you leave your pediatrician and move to an adult health care provider?
• Was your health care con3nuous or was there a gap?
• Did you leave ac3vely or passively?
Who Are CYSHCN?
“ Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emo3onal condi3on and who also require health and related services of a type or amount beyond that required by children generally.”
Source: McPherson, M., et al. (1998). A New Defini3on of Children with Special Health Care Needs. Pediatrics. 102 (1); 137-‐139.
Prevalence DC (%) U.S. (%) ProporBon of Youth with Special Health Care Needs, Ages 12-‐17
22% (8,235)
18% (4,581,950)
Propor3on of YSHCN with func3onal limita3ons 17 24
Propor3on of YSHCN with 2 or more chronic condi3ons 67 62
Propor3on of YSHCN with emo3onal, behavioral, or developmental condi3ons
55 64
Source: Na3onal Survey of Children with Special health Care Needs, 2009/10
How Many Youth Need TransiBon Planning?
What is Health Care TransiBon? Transi3on is the deliberate process of moving seamlessly from child-‐oriented health care to adult-‐oriented health care.
Components: • Self-‐Determina3on • Person-‐Centered Planning • Prep for Adult Health Care • Work/Independence • Inclusion in Community Life • Start Early
WHAT DO DATA TELL US?
What do youth say they want in transiBon?
Youth With DisabiliBes: Stated Needs for Success in Adulthood
PRIORITIES:
1. Career development-‐making $$$
2. Independent living skills
3. Finding quality medical care-‐what to do in an emergency
4. Legal rights
5. Protect themselves from crime
6. Obtain financing for school
Source: Point of Departure, a PACER Center Publica3on Fall, 1996
WHAT DO DATA TELL US?
What proporBon of parents report receiving adequate transiBon support for their YSHCN?
ProporBon of Youth with Special Needs Who Receive Services Needed to Make TransiBon
to Adult Health Care DC (%) U.S. (%) Total YSHCN meeBng transiBon measure
34% (2,385)
40% (1,708,799)
Gender Male 28 37 Female 42 44 Race/Ethnicity Black 31 28 White 51 46 Hispanic NA 25 Insurance Private insurance only 50 50 Public insurance only 20 26 Uninsured NA 20 Presence of a medical home With a medical home 44 55 Without a medical home 28 29 NA = sample size too small for reliable esBmates.
Source: NS-‐CSHCN 2009/2010
WHAT DO DATA TELL US?
How prepared are youth for managing their care in the adult health care system?
Internal Medicine Nephrologists (n=35) Survey Components Percentages
Percent of transitioned patients < 2% in 95% of practices
Transitioned patients came with an introduction 75% Transitioned patients know their meds 45% Transitioned patients know their disease 30% Transitioned patients ask questions 20% Parents of transitioned patients ask questions 69% Transitioned adults believed they had a difficult transition 40%
Source: Maria Ferris, MD, PhD, MPH, UNC Kidney Center 2011
What do pediatric and adult physicians say they do and need to assist YSHCN?
WHAT DO DATA TELL US?
Areas to Consider to Bridge the HCT Gap: Provider Needs/AcBviBes
Adult HCP Pediatric HCP • 95% want ini3al and ongoing communica3on
with previous providers • 100% request a medical history (wrigen
summary) and disease info
• 47% assist youth with referral to adult physician • 27% create portable medical record • 23% offer consulta3ve support to family or
internal medicine physicians • 80% find it difficult to break the bond with
youth/family
• Youth ready to make independent health decisions
• Disease management skills (know disease/meds/make appt/refill prescrip3ons, etc.)
• Youth guardianship issues clarified
• 84% of youth lack knowledge about condi3on • 33% of pediatricians discuss consent and
confiden3ally issues before 18 • 12% of pediatricians create Individual transi3on
plan
• Medical home • Financing (insurance), infrastructure • Increase medical knowledge of pediatric
diseases • More adult providers (gen and sub)
• Medical home • Financing (insurance), infrastructure • Assist in medical knowledge of adult providers • More adult providers (gen and sub)
Source: DC Provider Survey, AAP Periodic Survey, Annals Int Med Adult Provider Survey
What to do? Where to start?
Professional SocieBes & Health Care TransiBon
In the past and currently…
• Medical transi3on services provided by: Ø patchwork of pediatric clinics mostly in university subspecialty sejng Ø less common to have transi3on services in primary care sejng
• Na3onal data reveal ligle progress made in transi3on from pediatric to adult health care in last decade.
• 4 years ago-‐improving health care transi3ons was voted a “top 10” AAP priority
• Surveys of pediatricians, family physicians and internists begin to clarify transi3on issues and reveal the need for more informa3on and support re: transi3on
New Health Care TransiBon Clinical Report
What was needed: • Pediatricians and adult health care providers request tools and concrete methods/
processes to address barriers and improve care What was developed: Goal of broad disseminaBon of HCT • 2 years ago, AAP/ACP/AAFP Transi3on Authoring Group established to develop a
clinical report Ø Prac3cal, detailed guidance (including a step-‐by-‐step algorithm) on how to
plan and implement beger health care transi3ons for all pa3ents Ø Integra3ng transi3on planning into the medical home and ongoing chronic
care management Ø Providing guidance for financial support of HCT
• “Suppor3ng the Health Care Transi3on from Adolescence to Adulthood in the Medical Home” (Pediatrics, July 2011) – clinical report jointly authored by the AAP, the AAFP, and the ACP
Health Care TransiBon Clinical Report
• Targets all youth, beginning at age 12
• Algorithmic structure provides logical framework Ø Branching for youth with special health care needs Ø Applica3on for primary and specialty prac3ces serving children and adults with variety of condi3ons
Ø Structure for training, con3nuing educa3on, & research
• Provides explicit prac3ce-‐based guidance for planning, decisionmaking, and documenta3on processes
• Extends through the transfer of care to an adult medical home and adult specialists
Health Care TransiBon Milestones (transi3on visits from the algorithm)
• Age 12 – Youth and family aware of the prac3ce’s health care transi3on and transfer policy
• Age 14 – Health care transi3on planning ini3ated
• Age 16 – Discussion of youth and parental expecta3ons and preferences regarding adult health care
• Age 18 – Transi3on to adult model of care even if remain in a pediatric sejng before moving to adult model of care (appropriate guardianship issues addressed for cogni3ve ability)
• Age 18-‐22 – Transfer of care to adult medical home and specialists
NaBonal Health Care TransiBon Center • MCHB-‐funded resource center, called GotTransi3on? • Responsible for developing transi3on tools aligned with clinical
report and fostering prac3ce changes • Use of Learning Collabora3ve (LC) methodology used by the
Na3onal Ini3a3ve for Children’s Healthcare Quality (NICHQ) and pioneered by the Ins3tute for Healthcare Improvement (IHI). Ø Primary care expert panel in DC led the way developing
o LC charter o The 6 core HCT elements based on the algorithm o Transi3on tools o HCT index for evalua3on
Ø LCs in DC, Denver, Boston, NH
For more information: www.GotTransition.org
ImplementaBon: 6 Core Elements
PreparaBon: coordinaBon of care • Crea3on of prac3ce transi<on policy (Element #1) • A registry to pilot the process and track progress (Element #2) • A readiness skills checklist (Element #3)
Planning: part of each adolescent visit, clarify roles of parents/youth/providers • A transi3on ac3on plan (Element #4) • A portable medical summary (Element #4) • Condi3on-‐specific “fact sheets”(Element #5)
Transfer: IdenBficaBon and acBve communicaBon with adult providers • Transfer checklist (Element #5) • Availability of pediatrician as consultant for new adult provider (Element #6) • Direct communica3on with new adult provider (Element #6)
Ø Phone conversa3on Ø Agreement on 3ming of transfer Ø Adult prac3ce welcomes youth into prac3ce, reviews adult transi3on policy and
youth readiness skills
Pediatric Health Care TransiBon Transfer of Care Checklist
<PaBent Name> <Date of Birth> Date q Transfer of care policy discussed with youth and family
q Transfer of care op3ons discussed with youth and family
q Pediatric primary care prac3ce confirms transfer with adult primary care prac3ce
q Final youth readiness assessment completed
q Transfer of care package prepared or updated (for all youth, for YSHCN) including portable medical summary, readiness assessment, emergency care plan, transi3on plan and medical condi3on fact sheets
q Transfer of care package communicated to adult primary care provider via best available means (mail, fax, email, electronic health informa3on transfer)
q Ini3al visit with new adult primary care provider scheduled
q Follow-‐up communica3on with emerging adult (and family as appropriate) by pediatric primary care team regarding comple3on of transfer of care and level of sa3sfac3on with result
q Follow-‐up communica3on with new adult primary care team by pediatric primary care team regarding comple3on of transfer of care and level of sa3sfac3on with results; iden3fy any future plans/needs for on-‐going communica3on or consulta3on
<PaBent Name> <Date of Birth> Date
q Adult primary care team receives transfer request from pediatric primary care prac3ce ( phone call, email or fax depending on the complexity of the health condi3on)
q Adult primary care team provides “new young adult pa3ent” informa3on packet to pediatric primary care team and/or directly to youth (and family as appropriate)
q Pediatric primary care team confirms transfer with adult primary care team
q Transfer of care package received by adult primary care team via preferred or best available means (mail, fax, email, electronic records transfer)
q Transfer of care package reviewed and incorporated into adult primary care record (for all youth, for YSHCN)
q Young adult new pa3ent visit with new adult primary care provider scheduled
q Follow-‐up communica3on from pediatric primary care team regarding comple3on of transfer of care and level of sa3sfac3on with results; iden3fy any future plans/needs for on-‐going communica3on or consulta3on
Pediatric Health Care TransiBon Transfer of Care Checklist
Designing a LC for Health Care TransiBon
• Unique features Ø Dyads of pediatric and adult prac3ces Ø Involvement of care coordinators Ø Consumer involvement Ø Working across organiza3ons and systems to improve care
• Design and 3melines Ø Teaching and learning strategies Ø Incorporate elements to fit each prac3ce’s processes Ø Prac<ce, accountability, shared learning
DC as a NaBonal TransiBon Model • First of four LC to par3cipate • Funded by the DC Department of Health and operated by
The Na3onal Alliance to Advance Adolescent Health • Iden3fied five sites and teams from each site with lead
MD, care coordinator, and consumer Ø GW Internal Medicine
Dr. April Barbour, Holly Segal/Lauren Leatherman, Nikki Owens Ø Howard University Family Medicine
Dr. Billie Downing, Luis Nunez, Blesilda Licud, and Ashley Taper Ø Children’s NaBonal Medical Center Adolescent Health Center
Dr. Lisa Tuchman, Theresa Graves, and Angela Gerst Ø Children’s NaBonal Medical Center Adams Morgan Clinic
Dr. Nathalie Quion, Yan Orellana, and TjaMeika Davenport Ø Georgetown Adolescent Clinic
Dr. Kirsten Hawkins, Maria Aramburu, Janet Osherow, Drucilla Howard
DC as a NaBonal TransiBon Model: Learning CollaboraBve Teams
Howard University Hospital Team
Children’s National Medical
Center Team Georgetown University Hospital Team
George Washington University Medical Center Team CNMC Children’s Health Center -
Adam’s Morgan Team
Goal of Learning CollaboraBves: incorporate the 6 core elements into their pracBce processes
• Develop a wrigen health care transi3on (privacy and consent) policy for families, pa3ents, and staff
• Develop a transi3on registry to know which pa3ents are in the process and tracking major steps in their progress
• Test and use transi3on prepara3on and planning tools Ø Portable medical summary Ø Readiness assessments Ø Healthcare transi3on plans Ø Chronic condi3on fact sheets Ø Transfer checklists
• U3lize an adult model of care at 18 yrs (if cogni3vely appropriate) • Transfer prepared youth and family to adult medical homes
EvaluaBon: Medical Home Health Care TransiBon Index
• Indicator #1: Office health care transi3on (privacy and consent) policy
• Indicator #2: Staff and provider HCT knowledge and skills and coordina3on of care
• Indicator #3: Iden3fica3on of transi3oning youth/young adults (registries)
• Indicator #4: Transi3on prepara3on (readiness assessments)
• Indicator #5: Transi3on planning (transi3on plans)
• Indicator #6: Transfer of care or transi3on to adult model of care Ø Assessments for pediatric and adult prac3ces Ø Each HCT team self assess at baseline and 9 months Ø 4 levels for each indictor and 2 op3ons (par3al or complete) within each indicator
0
1
2
3
4
5
6
7
8
1 2 3 4 5 6
Scores
Core Elements
Pre LC, Feb. 2011
Post LC, Oct. 2011
Pre and Post HCT Index Scores ― DC
Moving Forward: Next Steps Build sustained transi3on system improvements and accelerate the adop3on of best prac3ces in HCT in DC.
• Disseminate and imbed transi3on processes into pediatric and adult medical home prac3ces and specialty clinics through training, coaching, and dissemina3on of transi3on tools
• Expand transi3on training opportuni3es for health care professionals • Work with public and private insurers and health plans on:
Ø outreach and educa3on to families and youth Ø care management support Ø payment and quality incen3ves for health care providers
• Develop youth and parent leadership on transi3on and educa3on opportuni3es to build awareness
• Complete more HCT research to find most effec3ve approaches for beger outcomes
Thank You [email protected]
Panel Discussion Core Element # 1 Lisa Tuchman, MD: Pediatric HCT Policy April Barbour, MD: Adult HCT Policy – Privacy & Consent
Core Element # 2, 3 Billie Downing, MD: Registry & Readiness Assessment
Core Element # 4 Kirsten Hawkins, MD, MPH: Portable Medical Summary
Core Elements # 3, 4, 5, 6 Nathalie Quion, MD: Care Coordina3on
Facilitator: PaBence White, MD, MA
Core Element #1: Pediatric HCT Policy
Lisa Tuchman, MD, MPH Assistant Professor of Pediatrics
Center for Clinical and Community Research Division of Adolescent and Young Adult Medicine
TransiBon Policy: Why is it important?
• Building consensus • Addressing fairness • Mee3ng expecta3ons • Allowing for planning and systema3c processes-‐ hard 3meline
TransiBon Policy at CNMC’s Adolescent Clinic
Ø The Adolescent Health Center is commiged to helping all of our pa3ents make a smooth transi3on from pediatric to adult health care.
Ø This process requires working with you to plan and prepare your transi3on star3ng around your 14th birthday.
Ø According to hospital policy, all pa3ents are expected to transi3on from CNMC to an adult primary care medical home by age 22 years.
Ø We will provide you with ongoing resources to help you to take increasing responsibility for your own health care to the best of your abili3es.
Ø We are also able to help you select a medical provider that par3cipates with your insurance, to organize your medical records, and to support all other aspects of planning for this important transi3on as part of lifelong prepara3on for a successful and well adult life.
TransiBon Policy: ImplementaBon Strategies
• Sat down as a team (MD, RN, consumer) to generate a list of things important to include
• Wrote a drau collabora3vely (template) • Shared with care team members: mul3ple providers, administrators, pa3ents, families Ø Revised several 3mes based on feedback
• Came to consensus that it was as good as we could make it
• Posted it on wai3ng room check-‐in windows Ø Packets at front desk, provider conference room
TransiBon Policy: Challenges
• Gejng team consensus, especially regarding age limits
• Gejng honest, thoughvul and construc3ve feedback (Youth/Parents) Ø Asking the right way/the right ques3ons
• Pos3ng and having it distributed systema3cally
• Gejng the team to prac3ce by the policy
TransiBon Policy: Benefits
• Families who reviewed the pilot policy said they were grateful for the informa3on Ø Many wished they’d had it when their older children were transi3oning
• Now everyone (youth/parents/providers) understands: Ø What is expected in the transi3on process Ø Over what 3me frame the process will occur
Core Element #1: Adult Privacy and Consent Policy
April Barbour MD, MPH, FACP Associate Professor of Medicine
Program Director, Primary Care Residency Division Director, General Internal Medicine
Department of Medicine George Washington University
Privacy and Consent Policy: Why is it important?
• Consistent with the law • Clarifies roles of pa3ents and parents in decision-‐making
• Creates a safe and comfortable environment for those 18 and over to discuss private concerns regarding their health
• Builds pa3ent competencies and pa3ent-‐centeredness
• Ensures consistency within the prac3ce
Privacy and Consent at GW’s Internal Medicine Clinic
The Medical Faculty Associates welcomes all youth and young adults including those with chronic pediatric condi3ons and complex health care needs. We provide an adult model of care for all of our pa3ents 18 years and older with modifica3ons as needed depending on the pa3ent’s intellectual ability and guardianship status. In order to make this a smooth transi3on, we ask that all new young adult pa3ents provide a portable medical summary or copies of their medical records and in the case of pa3ents with complex chronic condi3ons, a current care plan. We will also make every effort to coordinate the transfer of care with our new pa3ent’s prior medical home including direct communica3on with the pediatric medical home team, and assistance with the transfer of specialty care to adult specialists as needed. (cont’d on next)
Privacy and Consent at GW’s Internal Medicine Clinic
Our approach to the care of young adults age 18 and older meets HIPAA and state privacy and consent requirements making the young adult the sole decision-‐maker about care and about the sharing of personal health informa3on. This means that we do not discuss any aspect of your care with anyone else unless you specifically ask that we do. We understand that many people involve family and close friends in their health care decisions and would like their physician to share informa3on with those close to them. To allow others to be involved in your healthcare decisions requires legal authority through the signed consent of the young adult which we have in clinic. For those that cannot provide consent, we would need a legally valid custodial care or power of agorney documenta3on, or an adjudicated guardianship arrangement.
Privacy and Consent Policy: ImplementaBon Strategies
• Developed and revised with team of MD, RN, and young adult consumer
• Shared with other clinic staff
• Revised
• Reviewed by legal staff
• Posted
Privacy and Consent Policy: Challenges
• Difficul3es when consent, privacy, and guardianship issues have not been discussed prior to age 18
• Many parents unaware of HIPAA requirements and want to be present during visit
• Assessing pa3ent’s decision-‐making ability
Privacy and Consent Policy: Benefits
• Pa3ent Sa3sfac3on Ø Clear expecta3ons
• Provider Sa3sfac3on Ø Able to focus interven3ons
• Improved adherence and outcomes
Core Elements #2 and 3: TransiBon Registry and Readiness Assessment
Billie Downing, MD, FAAFP
Assistant Professor Howard University Hospital
TransiBon Registry: Why is it important?
• Crea3on of a paper or electronic database used to document/track youth with special health care needs as they move through the transi3on process
• Systema3cally iden3fies youth and young adult pa3ents needing self-‐care management assistance and planning for an adult model of care
• Helps to individualize pa3ent visits consistent with transi3on clinical recommenda3ons
TransiBon Registry at Howard’s Family Medicine Clinic:
ImplementaBon Strategies • Iden3fied youth ages 12-‐17 and young adults ages 18-‐26 to populate the registry
• Iden3fied relevant categories for the registries Ø Name, DOB, Diagnoses, Severity, HSCSN, PCP, Severity, Contact Date, Last Seen, Next Contact, Transi3on Policy (youth and young adult), Transi3on Visit, Readiness Assessment, Ac3on Plan
• Physician populated/popula3ng the registries and tracking progress
TransiBon Registry: Challenges
• Moving from a paper version to electronic version
• Informa3on to populate registry from different sources
• Imbedding the registry func3ons and popula3on management into ongoing clinical processes with assistance from primary care team
• Using the registry as a dynamic tool and upda3ng it
TransiBon Registry: Benefits
• Iden3fies youth and young adults in prac3ce and documents their transi3on status especially for a pilot transi3on effort in the prac3ce
• Organizes youth/young adults in your prac3ce in a database and iden3fies their needs and affords the opportunity for quality assurance projects
• Ensures youth/families receive recommended transi3on support services
• Helps to proac3vely iden3fy pa3ents needing transi3on support
TransiBon Readiness Assessment: Why is it important?
• Evaluate youth and young adults’ current healthcare knowledge base and skills and iden3fy areas that need further educa3on
• Youth/young adults and parents learn more about managing their condi3on and becoming ready for an adult model of care
• Everyone is informed about what’s to come
• Providers and families are able to work together with their provider to gain the necessary skills
• Readiness assessments for youth and for parents
• 21 item scale: Ø Ques3ons ask about understanding of health needs or disability, ability to make appointments/get prescrip3on refills, knowledge of what to do in emergency, and a general readiness scale
• Pa3ent answers ques3ons rated as: “Yes I do this; I want to do this; I need to learn to do this; Someone else will have to do this for me”
TransiBon Readiness Assessment at Howard’s Family Medicine Clinic:
ImplementaBon Strategies
TransiBon Readiness Assessment: Challenges
• Addressing range of pa3ent educa3on levels into youth and parent assessment that can be used by en3re prac3ce
• Iden3fying prac3ce process for how all youth/young adults and parents receive and fill out assessment
• How to incorporate readiness assessment into transi3on plan and into visit discussions/follow-‐up
• How to incorporate readiness assessment into EMR so it can be updated
• Have available updated readiness assessment for transfer packet for adult provider
• Time constraints
TransiBon Readiness Assessment: Benefits
• Solicits greater involvement of pa3ents/families in understanding their healthcare readiness
• Allows the prac33oner to assess the pa3ents’ transi3on status
• Allows the prac33oner to make a plan based on the assessment
• Ul3mately, improves the management of chronic condi3on and the independence of youth/young adults in their own care
Core Elements #4: Portable Medical Summary Kirsten Hawkins, MD, MPH, FAAP
Chief, Sec3on of Adolescent Medicine Georgetown University
Portable Medical Summary: Why is it important?
• Ensures medical informa3on is up-‐to-‐date
• Ability to consolidate and communicate with clear informa3on to be shared via Ø Email Ø Fax Ø Phone Ø In person Ø Across health systems (e.g. HSCSN, DDS, DMH)
• Facilitates transi3on of care from pediatric/adolescent to adult health care prac3ces
Portable Medical Summary at Georgetown’s Adolescent Clinic:
ImplementaBon Strategies • Components of portable medical summary
Ø Basic pa3ent personal and contact informa3on Ø Medical providers, emergency contacts Ø Diagnosis Ø Per3nent history Ø Current medica3ons, equipment needs Ø Allergies Ø Immuniza3ons Ø Special notes — guardianship status, communica3on preferences
• Share with young adult/family (before age 18) & providers
• Developed with our ins3tu3on’s HIT team to generate from EMR
Portable Medical Summary: Challenges
• Time-‐consuming to create in EMR
• Georgetown’s current EMR version: Ø Automa3cally updates from current visit Ø Requires upda3ng problem, medica3on and allergy lists separately
• Providers need training to locate and generate portable medical summary
• Dissemina3on to and u3liza3on by other providers within the system
Portable Medical Summary: Benefits
• Improves understanding and self-‐care management
• Prevents duplica3on of tests/procedures • Youth/young adults/parents don’t have to repeat
informa3on to mul3ple providers
• Improves pa3ent safety
• Ensures adult providers have accurate informa3on
Core Elements #3, 4, 5, 6: Care CoordinaBon Nathalie Quion, MD
Associate Medical Director Children’s Health Center, NW
Children’s Na3onal Medical Center
Care CoordinaBon: Why is it important?
• Helps families cope with feelings/health care responsibili3es in moving to a new system and new providers
• Helps prac3ce to be more pa3ent and family-‐centered • Builds a team-‐based approach to care • Creates efficiencies • Helps to link to other health and related services • Reinforces the transi3on process within the prac3ce
Ø Going over HCT policy Ø Upda3ng registry Ø Assis3ng with readiness assessments Ø Clarifying transi3on plan Ø Gathering key informa3on for transfer Ø Communica3ng with the adult care coordinator/provider Ø Being available for ques3ons from adult providers auer youth transfers
Who Are Parent Navigators? • Parent navigators provide care coordina3on support • The Parent Navigator Program
Ø Began in 2009 at Children’s Na3onal Medical Center in the Goldberg Center for Community and Pediatric Health
Ø Built upon families’ need for o peer to peer support o community resources o guidance in naviga3ng services
• A Parent Navigator Ø Is a parent of a child with special health care needs Ø Is knowledgeable about developmental disabili3es and the health
care delivery system Ø Imparts their knowledge to other families of children with special
health care needs
Parent Navigators/Care Coordinators: ImplementaBon Strategies
• Voice of parents and families in Ø Crea3ng the prac3ce transi3on policy Ø Implemen3ng prac3ce processes to facilitate transi3on
• Help maintain the transi3on registry • Support parents and families emo3onally and logis3cally
through the transi3on process • Maintain a library of community resources regarding
transi3on • Discusses the readiness assessment and transi3on plan
progress • Coordinates the transfer of informa3on to adult providers
Care Coordinators: Challenges
• Sustained funding for care coordina3on (NCQA medical home designa3on)
• Ini3al and ongoing training
• Defini3on of clear roles and func3ons in job descrip3on related to transi3on
Care Coordinators: Benefits • Families are more sa3sfied with their visits
• Parents seeing the value of having teens, if able, take on more responsibility for their own care
• Planning for transi3on early is much beger than wai3ng 3ll the last minute for everyone
• The earlier that families and youth learn about the transi3on process, the more prepared they feel
• Comfort in having an organized transfer process in place and knowing that families feel more confident that informa3on/needs of their child have been adequately communicated to the adult provider
• Health Services for Children with Special Needs, Inc. • DC Learning Collabora3ve Teams
• DC Department of Health • Local Chapters of the American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians
• Georgetown University School of Nursing and Health Studies • DC Chapter of the Na3onal Associa3on of Social Workers • Transi3on CME Planning Commigee
Thank you to everyone who made this evening a success!
For more informa3on on health care transi3on resources or training, please contact:
[email protected] [email protected]
Please remember to fill out an evalua3on form prior to leaving.