Starting and Supporting Family Advisory Groups April 24, 2014 11 am – Noon, CDT

1. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Starting and Supporting Family Advisory Groups April 24, 2014 11 am – Noon, CDT

2. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Moderator: Jennifer L. Lail, MD, FAAP Associate Professor of Clinical Pediatrics - Affiliated Assistant Vice-President, Chronic Care Systems James M. Anderson Center for Health Systems Excellence Attending Physician, Complex Care Clinic Cincinnati Children’s Hospital Medical Center Cincinnati, OH

3. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Faculty: Cristina Pelaez, MD, FAAP Assistant Professor of Clinical Pediatrics Director of the Medical Home Department of Pediatrics University of South Florida Member of the Florida CHIPRA Expert Group Tampa, FL

4. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Faculty: Tim Lane Parent Partner, Advisory Group Member Department of Pediatrics University of South Florida Tampa, FL

5. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Faculty: Susan Sommer, MSN, NP, AE-C Clinical Director, Community Asthma Initiative Boston Children’s Hospital Healthy Tomorrows Partnership for Children Program Boston, MA

6. Fostering Partnerships and Teamwork in the Pediatric Medical Home: A “HOW TO” Webinar Seriesbrought to you by the National Center for Medical Home Implementation Faculty: Chanese Brown Parent Partner, Advisory Group Member Community Asthma Initiative Boston Children’s Hospital Boston, MA

7. Disclosures We have no relevant financial relationships with the manufacturers(s) of any commercial products(s) and/or provider of commercial services discussed in this activity. I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.

8. Webinar Objectives By the end of this webinar, the participant will be able to: Define the term “family advisory group” and explain its potential effectiveness as part of a family-centered medical home approach to providing care. Describe strategies for preparation and implementation of family advisory groups within a pediatric practice. Provide examples of successful family advisory groups in pediatric practices.

9. Pediatric Patient-Centered Medical Home Team-based approach Families are essential team members Establishing a family advisory group can help ensure family members are part of the health care team Dedicated team and senior leadership

10. Core Concepts of Patient- and Family- Centered Care Dignity and Respect Information Sharing Participation Collaboration

11. Defining Family Advisory Groups A group of patients and/or their families that have agreed to work with a practice and its providers to improve the care that it provides. Parents are considered experts in their child’s care Members can include: Parents Youth Caregivers Members of the practice team Convenes on a regular basis Identifies strengths, weaknesses, ways to enhance care

12. Activities and Benefits of Family Advisory Groups Enhance communication Share experiences Identify issues Create educational materials and useful tools Suggest, plan, implement and evaluate improvements Improve health outcomes of children Empower parents/caregivers

13. Pre-Requisites to Starting Family Advisory Groups Gain buy-in Establish fundamentals of family-centered care Assess QI Capacity Identify processes/mechanisms of progress Budget

14. Starting and Supporting a Family Advisory Group Discuss potential benefits and risks Propose structure and operation Identify a staff leader/facilitator Establish selection criteria for participants

15. Starting and Supporting a Family Advisory Group Solicit participants Set a schedule Develop communication plan HIPAA Develop goals and expectations

16. Best Practice Cristina Pelaez, MD, FAAP Tim Lane, Parent Advisory Council Member University of South Florida Tampa, FL

17. University of South Florida The Practice’s View: Parent Advisory Council • Motivation: Improve parent partnerships • Role: Guide and Educate • Benefits: Increase quality and satisfaction • Future: Team work between practice and parents

18. University of South Florida Parent Advisory Council • PLAN: • Create a parent advisory council • Meet 4x/year • 15 families, 3 practice sites • General pediatricians, specialists, hospitalists, social workers, RN staff

19. University of South Florida Parent Advisory Council • DO: • Recruitment • Steering Committee • Parent Advisory Council Meeting • 8 Families • 5 Providers • 1 Nurse • 1 Teen • 1 Patient

20. University of South Florida Parent Advisory Council • STUDY: • Positive results: • From 0 to 8 families and 2 patients • Positive feedback from participants • Difficulty with recruitment • Need to recruit from a broader base: • No-shows to meetings • Patients can get sick

21. University of South Florida Parent Advisory Council • ACT: • Modify the recruitment • PAC suggested: • Do not limit recruitment to doctors • Open invitations to parent groups • Advertise in the clinic front desk, bathrooms and patient rooms • Web communication and Facebook

22. University of South Florida Parent Advisory Council • ACT (continued): • Start a Parents Blog • Develop USF Pediatric Application for Parent Information • Continue to pursue using one way email as means to communicate with families

23. University of South Florida Parent Advisory Council: Sample Agenda • Introductions • Medical home Overview • Family Advisory Council Planning • Purpose • Meeting Logistics • Membership • By-Laws • Member orientation • Goals • Launch meeting agenda • Next Meeting Date

24. University of South Florida Parents as Part of the Team • Value is placed on input and expertise of the parents • Parent insights carry equal weight amongst the team • Not always the case with unfamiliar medical professionals: • We often have to “elbow in” to make sure we are heard • Parents are the primary caregivers 90% of the time. They know the signs, they know the strategies, and they know the correct size suction catheter. Listen to them; involve them.

25. University of South Florida The Parent’s View: Parent Advisory Council • Motivation: • Ongoing quality of care for our own medically complex child • Desire to drive positive change for other families with at-risk children • Community service/philanthropy • Role (split roles for each parent): • Tim – liaison for Patient-Centered Medical Home and Grand Rounds presentations • Angel – Primary care coordinator for our child – active in Parent Advisory Council

26. University of South Florida The Parent’s View: Parent Advisory Council • Benefits: • Driving the best possible care and advocacy for our child • Positive impact for future families • Future: • More formal interaction and guidance to the AAP and USF • Engagement in Patient Portal development • Enhance services to at-risk families

27. University of South Florida What works for parents… • Meetings between 5:30-7:30 pm • Offer meeting options • Incentives or stipend recommended • Use a familiar place for meetings, like the office • Offer food • Offer an educational activity • Accommodate for the parents

28. University of South Florida Lessons Learned • Parents need guidance • Parents love to help • Always have a task for parents • Listen to their opinions and make it happen • Offer different types of meetings (face to face, webinars, conference calls) • Have a staff member dedicated to follow up with parents

29. Best Practice Susan Sommer, MSN, NP, AE-C Chanese Brown, Family Advisory Board Member Boston Children’s Hospital Community Asthma Initiative Healthy Tomorrows Partnership for Children Program Grantee

30. Community Asthma Initiative Background Asthma Home Visiting Program piloted in 2005 In response community needs assessment Providing: comprehensive asthma education case management home environmental assessments

31. Community Asthma Initiative Background (continued) Family Advisory Board convened 1 year later families served through the program parents recommended by PCPs Goal: Feedback on services, input into program priorities, identification of barriers to good asthma control

32. Community Asthma Initiative Structure Meetings 3-4 times a year subcommittee meetings, as needed, for specific activities Incentives: $25 grocery gift card, free parking, dinner, child care (lots of kids!) Interpreter services Chaired by community asthma initiative nurse case manager

33. Community Asthma Initiative Identified Issues Poor housing conditions Need for more outreach/community education about asthma Confusion, myths about inhaled steroids Want more activities geared for children with asthma, especially around exercise Need for better communication with schools

34. Community Asthma Initiative Activities Presentations by community asthma initiative staff on program outcomes Additional parent education requested by parents regarding asthma Addressing parents’ ongoing concerns about medications, challenges around adherence Focus group for adolescent children of advisory board members

35. Community Asthma Initiative Activities (continued) Provided advocacy training for parents Prepared presentation for CDC site visitor Opportunities to attend and speak at city council and legislative hearings Organized two community forums Parents contributed significantly to planning and outreach, presented at forums

36. Community Asthma Initiative Successes/Challenges Parent enthusiasm and consistency Parent inability to follow-through due to competing demands Initially, no set term of participation for parents on the board Lack of new ideas Support groups rather than advisory group

37. Community Asthma Initiative Parent Perspective Motivation: Concerned parent advocate Saw other parents having similar issues Role: Discussion of questions, concerns Support

38. Community Asthma Initiative Parent Perspective Benefits: Feel supported Questions answered Gained another family; met families with issues and concerns just like mine Challenges: Year 1: inability to attend meetings, participated through email

39. Community Asthma Initiative Future Ended initial advisory board at end of CDC grant Created new board as combined parent and community board, including health center staff, school nurse Increased focus on schools led to pilot project in one elementary school Looking at new ways to get asthma education messages out to community

40. Conclusions A family advisory group can be an effective strategy to enhance the family-centered medical home approach to providing care. Benefits of family advisory groups include improved communication and inclusion of the patient and family in health care. The successful implementation of a family advisory group around a specific health care condition can unite parents, improve parent/professional partnerships and quality of care.

41. Resources • National Center for Medical Home Implementation: Family Advisory Groups • Institute for Patient- and Family- Centered Care (IPFCC): Creating Patient and Family Advisory Councils • Institute for Patient- and Family- Centered Care: Advancing the Practice of Patient- and Family- Centered Care in Primary Care and other Ambulatory Settings • National Initiative for Children’s Healthcare Quality: Patient and Family Advisory Group Toolkit • Picker Institute:Eight Principles of Patient-Centered Care

42. NCMHI Educational Video Series • Don’t forget to view the National Center for Medical Home Implementation (NCMHI) Video Series. Topics Include: • Team Huddles • Care Partnership Support • Family Advisory Groups

43. Questions?

44. We’re Here to Help You! Have a question about medical home? Contact us! Medical_home@aap.org 800/433-9016 ext 7605 Subscribe to our Listserv!