1. Improving Quality for ChildrenApproaches to Building State Capacity Charlie Homer, MD, CEO Child Health Services Research Meeting Academy Health, 2005

2. Problem Statement Quality chasm is widespread Quality chasm affects the care of children, youth and families as it does adults Health care for children is: Predominantly outpatient Locally delivered and organized State regulated Substantially funded through state programs Major state public health role (e.g., immunizations, newborn screening)

3. Requirements for improvement Will to improve Better Ideas Assistance with Execution Training Tools Support Business Case

4. National improvement programs may have limited local impact Cost Distance Credibility Practical assistance Variability in financial context

5. Numerous potential state based resources to support improvement Professional society/medical association chapters Health Department Immunization programs Title V (Children and Youth with Special Health Care Needs) State universities Medicaid Agencies Combinations of the above

6. Childrens Quality Initiatives State ApproachNICHQ Initiated Improvement Program Professional SocietyPartnership for Quality (ADHD)AHRQ Public Health: ImmunizationNJ, other Public Health: Title VMedical Home Learning Collaborative CombinationImprovement Partnership (VCHIP, envision NM, etc.)

7. Aim: Medical Home Learning Collaborative To improve care for children with special health care needs/youth by implementing the Medical Home concept To foster substantial relationships between Title V programs and their states primary care community, enabling Title V to: Support improvement in practices and Spread improvement across their State

8. Why Title V: The Title V Mandate OBRA 1989 Healthy People 2010 Objective 16.23 Six defining outcomes The New Freedom Initiative

9. Six outcomes Family participation at all levels A medical home for each child with special health care needs Adequate coverage Screening Family-friendly community systems Transition services

10. Why focus on systems for children with special health care needs The complexity of childrens lives The scope, scale and range of childrens special needs The inadequacy of baseline supports The gap between social needs and private resources

11. The central place of medical home As a critical point of parent connection As hub of services As locus at which remaining 5 outcomes may be addressed, operationalized, tested

12. The medical home from a Title V perspective Where the action is for children and families Meeting place for powerful constituencies Public health at the molecular level

13. IHI Breakthrough Series (12 month time frame) Select Topic (develop mission) Planning Group Develop Framework & Changes Participants (10-100 teams) Prework LS 1 P S AD P S AD LS 3 LS 2 Supports Email (listserv) Phone Conferences Visits Assessments Monthly Team Reports Dissemination Holding the Gains Publications Congress etc. AD P S Expert Meeting AP1AP2AP3 LS – Learning Session AP – Action Period

14. Modifications to BTS Design Participants= 11 State Title V Programs, each of whom recruited 3 Primary Care Practice Teams Faculty= Clinical, Title V, and Parent Chair Teams= Physician, Staff (Nurse/Care Coordinator), Parent Topic= Medical Home, aka, Chronic Care Model for CYSHCN

15. Faculty and Staff

16. Faculty Leadership Chair: Carl Cooley Co-Chairs: Debby Allen, Alan Kohrt Director: Jeannie McAllister Improvement Advisor: Jane Taylor Staff Lisa Horvitz, Colleen ORourke, Sandra Cragin Faculty Maureen Mitchell, Family Voices Betty Pressler, Judy Palfrey, Margaret McManus, Chris Stille, Richard Antonelli, Amy Gibson (AAP), Lois Kohrt

17. Participants- State Title V Agencies Connecticut Colorado Florida Ohio Oklahoma Louisiana Michigan New York Utah Virginia Wisconsin + North Carolina

18. Participants Teams-Practices 3 Teams from each State 43% Community Based, Group Practice 22% Community Hospital or Network Group Practice (e.g., Marshfield Clinic, Bassett Health) 25% Academic Primary Care Sites 9% Solo Practice Team Members Physician, nurse/other office staff/care coordinator, parent partner

19. Key Concepts Medical Home/Care Model for Child Health Model for Improvement Model for Spread

20. Medical Home is Accessible Family Centered Continuous Comprehensive Coordinated Compassionate Culturally Effective

21. Functional and Clinical Outcomes Resources and Policies Community Care Model for Child Health in a Medical Home Health System Health Care Organization (Medical Home) Delivery System Design Decision Support Clinical Information Systems Care Partnership Support Informed, Activated Patient/Family Prepared, Proactive Practice Team Family - centered Coordinated and Equitable Timely & efficient Evidence-based & safe Supportive, Integrated Community Prepared, Proactive Practice Team CMHICMHI

22. Model for Improvement ActPlan StudyDo What are we trying to accomplish? How will we know that a change is an improvement? What changes can we make that will result in an improvement?

23. Diffusion or Spread BETTER IDEAS Happens over time COMMUNICATED Thru a SOCIAL system Adapted from Rogers, 1995 In a certain way (C) 2003, Sarah W. Fraser

24. Measures ED visits Hospitalization rates Family worry Front office satisfaction Medical Home Index Care Plans Practice Satisfaction

25. Medical Home Learning Collaborative MHI Pre and Post Measures CMHICMHI

26. Results-Quantitative

27. Qualitative Results: Title V Most valuable activities and insights: Conduct walk-throughs of practicesleading to learning Connect teams to state resources Assist with care coordination Outreach to broad variety of audiences Practices need help working with families Positive impact on how to implement change and promote adoption of new models

28. Qualitative Results-Parents Parents can be very effective in this process because they can counter assumptions health care providers make about the way things work" "There are things I can do, like pre-register my child for appointments...my pediatric clinic and the hospital are willing to do [many things] to make things better for my family. I never would have known what to ask for, as a new parent, before the medical home training"

29. Qualitative Results-Practices The MHLC "helped the practice focus on achievable steps to initiate a true medical home "the small changes have made a world of difference in our practice... Specific changes (self-report) 70% streamlining access 64% have designated care coordinator 63% working with community agencies 60% partnering with families 50% using some form of registry

30. Lessons Learned Feasible to address improvement using non-categorical approach Parent involvement essential Requires planning and support State/practice interaction feasible Strengthened by broader coalition (funders, professional societies), greater training Reform/improvement efforts require coordination Although CYSHCN broad category, efforts may remain in silos Its a great thing to do!

31. A Sonnet When to NICHQ Learning Sessions we go, We summon up remembrance of tasks past. We sigh the lack of many a thing we know, But have hope to make Medical Home last. In the Northwoods our Wisconsin team met, To have a group retreat and plan ahead-- The practice teams commitment was set, And we shared Title Vs vision for spread. Then children and families noticed change; care plans, identification and more all became part of Wisconsin teams range with the Chronic Care Model as their core. So, till the State Budget grants our evry wish, we will persevereour defining niche.

32. The Job of Title V (Deborah Allen) To the tune of Hes Go the Whole World in His Hands

33. They got a coalition that wont quit, Got doctors, families, payers, to commit. Theres not a single player, they omit, Cause thats the job of Title V.

34. TA to every practice, helps docs see, How to engage kids parents, meaningfully. Dont want no tokenism, no siree, That wouldnt sit with Title V.

35. Theyve built a database thats deep and wide. Theyve listed every resource, in that guide. Theyve found each scrap of info, that applied, Cause thats the job of Title V.

36. Theyre gonna build a network, thats a fact. Where all the service systems, interact. Til then theyll have to plan, do, study, act, Cause thats the job of Title V.

37. MHLC II 8 Additional States DC, IL, ME, MD, MN, PA*, TX, WV, Expansion of State Teams Include AAP/AAFP Chapter Representative Include Insurer (Medicaid) on Team Predominant Focus on Supporting Practices Other Diffusion Several State Wide Collaboratives Change in Function and Activity National Center for Medical Home