Medical Home Key Clinical Activity Session 2: Family Centered Care

1. Medical Home Key Clinical Activity Session 2: Family Centered Care Jill Rinehart, MD FAAP Associate Clinical Professor Pediatrics University of Vermont Medical School Owner/Pediatrician Hagan, Rinehart & Connolly Pediatricians, PLLC Florida Pediatric Medical Home Demonstration Project Learning Session I September 23-24, 2011

2. Disclosure • I have no relevant financial relationships with the manufacturers of any commercial products and/or provider of commercial services discussed in this CME activity. I do not intend to discuss an unapproved/investigative use of a commercial product/device in their presentation.

3. Our Medical Home Program Burlington, Vermont • Three pediatricians, Dr. Joseph Hagan, Dr. Jill Rinehart, Dr. Gregory Connolly • Two Pediatric Nurse Practitioners, Maryann Lisak & Tonya Wilkinson • One main RN Care Coordinator Kristy • Office manager, Accounts manager, one office assistant, four additional part-time nurses, three medical assistants • ~4000 Active Patient List • Dr. H 1991, Dr. R 1999, Dr. C 2010 • Insurance mix: 35% Mcaid, 60% Private,<5% uninsured

5. Family Centered Care: What? • Provides care that is “whole-person” oriented, consistent with unique needs and preferences of the families • Partners with patients and families to make treatment decisions • Has open communication between patients and care team, access to resources to help when communication is strained

6. Family Centered Care • Accessible 24/7 • Accessible (universal design) • After Hours coverage • Admit to children’s hospital

7. Family Centered Care: Why? • “Increasing evidence that the care experience (which encompasses how health care practitioners communicate with patients and families and invite their active participation in clinical care) affects outcomes. The better the experience--relationship and communication with the provider--the better the outcome.” • Mackean, G.L., Thurston, W.E., Scott, C.M. (2005) Bridging the Divide between families and health professionals’ perspectives on family-centered care. Health Expectations, 8, 74-85

8. National Study-CSHN, 2005-6 Surveyed40,840 Children Measured 5 core medical home components: • Having a usual sourceof care • Having a personal doctor or nurse • Receivingall needed referrals for specialty care • Receiving helpas needed in coordinating health-related care • Receivingfamily-centered care “New Findings from the 2005-06 NS-CSHN,” Strickland, B.et.al.Pediatrics, June 26, 2009 Vol. 123

9. National Study-CSHN 2005-6 Good News: • 90% of CSHN and their peers had “usual source of care” and a personal MD or nurse BUT only half of CSHN and peers had access to medical home in all 5 aspects • As family income increases, access to medical home increases • Access is affected by race/ethnicity, health insurance status, severity of child’s condition “New Findings from the 2005-2006 NS-CSHN,” B.Strickland, et.al.Pediatrics, June 26, 2009Vol. 123

10. Access to Medical Home • Parents of CSHN who do have medical homes report less delayed or forgone care and significantly fewer unmet needs for health care and family support services • But limited improvements since success rates first measured in 2001 NS-CSHN “New Findings from the 2005-2006 NS-CSHN,” B.Strickland, et.al., Pediatrics, June 26, 2009 Vol. 123

11. Family Centered Care: How? • Interdisciplinary Teams • Care Conferences • Discharge Rounds at Vermont Children’s Hospital • Co-located Psychologist, psychiatry consultation twice a month • Pediatric Subspecialists are collaborating more with one another (ENT, Pulmonary, GI)--> connecting to medical homes

12. Interdisciplinary • Care Conferences: Family, Kidsafe Collaborative, Burlington Housing Authority, Howard Center, Bridge Program, Burlington School district, Shelburne School District, psychologist, CSHN social worker, school nurses, PT, OT, SLP

13. Family Centered Care • Coordinates across settings and services

14. Family-Centered • McKayla is a 12 year old with Nonketotic Hyperglycinemia • Developmental Delay • Choreoathetosis • Seizures • Dysphagia (G-Tube) • Friend, classmate, daughter, niece

15. Compassionate Admitted for aspiration pneumonia

16. Comprehensive • Physician facilitates essentially all aspects of care • Pediatric Resident communicates with neurometabolism program to adjust feedings/meds • Family as experts: provides medication lists, dietary history, clinical expertise:“She’s herself again!”

17. Family Centered Care • Coordinates a patient’s health care access across care settings and services, over time, in consultation and collaboration with patient and family • understand the families’ strengths • identify gaps in services

18. What the Julius Medical Home Was at HRC • Incredible reputation • Amazing Physicians • 24/7 Coverage • Nurses that were lactation specialists • Integrated approach and interest in Matt’s whole life

19. Our Medical Home Until 1:30pm 2/15/01 FAMILY Support Family & Friends MEDICALHOME PRIMARY DOCTOR CARE COORDINATOR DAYCARE

20. And Then…Along Came the Amazing Miss Kate • Congenital Hydrocephalus • Multiple revisions, infections, complications • Cerebral Palsy, Epilepsy • Downright remarkable

21. Our Medical Home Post Diagnosis 1:35 pm 2/15/01 FAMILY Support Family, Friends, Groups, Advocacy Specialists Neurosurgery Neurology Physiatrist Endocrinology Funding Insurers Medicaid FIT CSHN MEDICALHOME PRIMARY DOCTOR CARE COORDINATOR On-Going Care Team Social Worker OT/PT/SLP Therapists Daycare Staff & Aide Respite Medicaid Aris FIT CSHN Clinics Funding Equipment

22. Family Centered Care • Provides care that is “whole-person” oriented, consistent with unique needs and preferences of the families • We get to know our patients, prepare prior to visit (C.C.) • Strengths based (S. family) • “Flags” in the EHR • Registry • “Reminders” section

23. Family Centered Care • Partners with patients and families to make treatment decisions • Especially with subspecialty recommendations, medical home often “sells” the intervention

24. Family Centered Care • Has open communication between patients and care team, access to resources to help when communication is strained • Access to pediatric ethicist • Co-located child psychologist

25. Building Medical Home Teams • Care Coordinator • Team Huddles • Provider Meetings • Staff Meetings • Co-located Psychologist • Pediatric Psychiatrist-Case consults every 2-3 weeks • New alliances: Community Health Team, Medical social worker, Pediatric Registered Dietician

26. Family Centered Care: Specific Strategies • Mission Statement of your Medical Home • “Our practice partners with families and community to build relationships that nurture children's physical and emotional health and well-being.” • Identify Care Coordinator Role • Phone follow up after discharge • Registry of CSHN • “Reminders” Box

27. Engaging Patients and Families • Family Centered Care • Motivational Interviewing • Team building • Empowering parents as experts and partners • Medical Home Index • Family Advisory Board

28. Practice Organization • Preparing for Office Visits (pre-visit forms)parent, youth • Patient Registry-flag in E.H.R. for CSHN, or “more time needed” • Access to clinical guidelines: (Bright Futures, ADHD, Asthma) • Care coordinator(nurse): connects with families with newborns, after ED visits, discharge from NICU, or Children’s Hospital • Care Conferences: brings families, communities together

29. Quality Improvement Strategies • Practice Improvement Partnerships (Blueprint for Health, NCQA) • Medical Home EQIPP Course • Bright Futures EQIPP Course • PDSA cycles on building a team, ways to engage families, implementing clinical guidelines (Bright Futures, acute conditions, implementing a recall/reminder system) • Self-assessment! (Medical Home Index, FCC Self-Assessment)

30. Thank You to Our Parent Partners 30 Carolyn Brennan Kimberly Cookson Sandy Julius Scott Metevier Peggy Mann Rinehart Wendy Ruggles Theresa Soares Kate & Michael Stein

31. Resources 31 Antonelli RC, Stille CJ,Care , Antonelli DM, “Coordination for CYSHCN: A descriptive Multisite Study of Activities, Personnel Costs, and Outcomes,” Pediatrics, July 2008 Baruffi G, Miyashiro L, Prince CB, Heu P. “Factors associated with ease of using community-based systems of care for CSHCN in Hawaii,” Maternal Child Health J, 2005 Broyles RS, Tyson JEH, Heyne ET, et al. “Comprehensive follow-up care and life-threatening illnesses among high-risk infants: a randomized controlled trial,” JAMA. 2000 Christakis D, Mell L, Koepsell TD, Zimmerman FJ, Connell RA. Association of lower continuity of care with greater risk of emergency department use and hospitalization in children. Pediatrics. 2001 Cooley C, McAllister J, “CMHI National Outcomes Study Cost/Utilization,” Pediatrics, July 2009

32. Resources Resources 32 Christakis D, Mell L, Koepsell TD, Zimmerman FJ, Connell RA. Association of lower continuity of care with greater risk of emergency department use and hospitalization in children. Pediatrics. 2001 Hagan, J.F, Duncan, P., Shaw, J., Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents, p.4 Homer CJ, Klatka K, Romm D, et al. “A review of the evidence for the medical home for children with special health care needs.” Pediatrics. 2008 MCHB/NCHS. National Survey of Children with Special Health Care Needs, 2002 National Center for Medical Home Implementation “Building Your Medical Home Toolkit,” website:http://www.pediatricmedhome.org/ Strickland, et.al.,“New Findings from the 2005-2006 NS-CSHN,” Pediatrics, June 26, 2009

33. Family as Expert