Hala Durrah, MTA Patient Family Engagement Consultant, Advocate & Speaker

1. We Are All On The Same Team- Strategies for Successful Patient-Provider PartnershipsTexas Primary Care & Health Home Summit 2018 Hala Durrah, MTA Patient Family Engagement Consultant, Advocate & Speaker Renee Turchi, MD, MPH, FAAP Division Chief, Pediatrics St. Christopher’s Hospital for Children

2. Introductions

3. Session Objectives • Participants will learn the definitions and principles of patient family engagement and centered care and how they are the foundation of the Patient Centered Medical Home • Participants will be provided with the growing evidence base to support patient family engagement and practical tools in order to engage in this work in their practices and systems.

4. What is Patient Family Centered Care? • Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. • It redefines the relationships in health care by placing an emphasis on collaborating with people of all ages, at all levels of care, and in all health care settings. • In patient- and family-centered care, patients and families define their “family” and determine how they will participate in care and decision-making. • A key goal is to promote the health and well-being of individuals and families and to maintain their control. Institute of Patient Family Centered Care, Bethesda, MD, www.ipfcc.org

5. What is Patient Family Engagement? Patient and family engagement: • Is an important component of patient- and family-centered care. • Creates an environment where patients, families, clinicians, and hospital staff all work together as partners to improve the quality and safety of hospital care. Involves patients and family members as: • Members of the health care team. • Advisors working with clinicians and leaders to improve policies and procedures. Agency for Healthcare Research and Quality (AHRQ), www.ahrq.gov

6. Principles of the PCMH The medical home is best described as a model or philosophy of primary care that is: • Patient-centered • Comprehensive • Team-based • Coordinated • Accessible • Focused on Quality and Safety Patient Centered Primary Care Collaborative (PCPCC), www.pcpcc.org

7. Connecting the Dots

8. We Are All Part of the Care Team

9. Being Part of the Care Team- My Family’s Journey • In the Winter 2003- My husband and I welcomed our first child • By her second day of life, we heard the words “Something is Wrong” • By the time she was 5 weeks, we had a diagnosis • At 7 weeks of age she had her first surgery • And we have been in the “system” ever since…..

10. Hearing the Words Again…Something Is Wrong….

11. And Then There Was Cancer

12. 2011- The Year of Cancer

13. And Here We Are Today…

14. Ayah-Why I Want To Be Part of the Care Team

15. Reflections, Q&A, Break • Let us reflect and open for questions and answers • We will take a 10 minute break, we look forward to continuing after our break

16. Family Centered Care • Core Element of Medical Home • “..assures health and well being of children and their families through respectful family professional partnership. It honors the strengths, cultures, traditions, and expertise that everyone brings to the table” • Bishop, Wall, Arango, 2002-04.

17. One Family’s Care Map www.childrenshospital.org/care-coordination-curriculum/care-mapping

18. Building the Evidence Base Agency for Healthcare Research and Quality (AHRQ)- “Excellent evidence that patients and families can identify and report adverse events that affect their own care or the care of others.” “Patients and families possess expert knowledge about patient's status that may be unavailable anywhere else.” “Research shows that when patients are engaged in their health care, it can lead to measurable improvements in safety and quality.”

19. Don Berwick, IHI

20. Building the Evidence Base-Outcomes American Hospital Association (AHA)- “Patients and their designated family or health care support person have a unique and valuable perspectives that inform and improve patient safety in any health care setting.” Centers for Medicare and Medicaid Services (CMS) "A key strategy to achieving better outcomes is to meaningfully engage patients as partners in decisions about their health care."

21. Building the Evidence Base-Safety Press Ganey's annual "Strategic Insights" Report released in March 2017- “Examined patient experience scores, care quality data, and other measures and found a direct link between patient experience and safety." 

22. Families are key partners…How do we get started?

23. Start Somewhere • There is not a “ONE SIZE FITS ALL” approach • Many resources for best practices across the country • Culture change is difficult, but well worth the results • Starts with a commitment to the partnership and the willingness to exchange ideas • It could begin with one patient/family advisor reviewing a brochure or serving on a committee for redesign of a unit • Do not be afraid, start somewhere; “Somewhere is always better than nowhere” • We all seek the same goal- compassionate, collaborative, safe and quality care

24. https://www.youtube.com/watch?v=gT_DCFpoS-s

25. Group Discussion About The Video • Reactions? • Takeaways? • What comes through the strongest from the family? • Value of patient/family engagement

26. Patient Family Advisors/Patient Family Advisory Councils (PFAC) • “We only can get better together” • Not FOR patients and families but WITH patients and families • Patient/Family Advisors serve on committees (i.e. quality, safety) • PFACs are groups that represent the practice or system as a whole or a may represent a specific unit, they include patient/family advisors, senior staff members, and front line staff members • Keep in mind that PFACs should be representative of the community being served, diverse opinions and backgrounds are important • Patient/Family Advisors may have “good” or “not so good” stories to share, but most that come to this work want to provide constructive information to improve quality and safety

27. Selecting a Patient Family Advisor • Parent of child with medical complexity/Patient/Caregiver • Not close to diagnosis • Variability in system experiences • Available • Desire to help other parents navigate the systems of care • Can speak beyond their own experience • Discretion and confidentiality • The ability to support a patients treatment plan • Resiliency to address challenges Right Place in Life • Knowledge of systems & resources (experienced systems) • Number of Parent Partners/Patient Family Advisors • The ability to fit into a practice and work with staff and administration-good communication

28. Why Patient Family Advisors? • Fosters understanding and cooperation • Promotes respectful, effective partnerships • Results in efficient planning to ensure services meet family needs • Provides mechanism for consumer input • Parents are experts for their children

29. Tools and Resources for Sustainability

30. Engaging Patient/Family Advisors • Patient/Family Advisors: • Practice team members • Part of QI team • Mentor Group • Community partners • F2F

31. Monthly Education Sessions for Patients and Families

32. Family Survey n=45 n=45

33. Engagement Tools & Activities • Resource Bulletin Board • Suggestion box • Health or resource fairs • Patient and Family fun nights • Patient/Family advocates available on site/Community Liaison • Patient Family partner group • Patients/Families as medical home team members • Patients/Families as part of practice “grand rounds” • Care Plans • Contracts for Parent Partners • Job Descriptions • Advertisements • Newsletters • Patient Family Faculty/Advisory Councils • Focus Groups

34. Levels of Patient/Family Involvement Adapted with permission from: Family Engagement in Quality Improvement, Jill Rinehart, MD, FAAP; Shelly Waterman, VT Family Network

35. Feedback is essential in any industry….

36. Connecting the Dots Action plan in your office Assess and re assess (e.g. patient/family experience)

37. “To Be” vs. “To Do”

38. BREAK We will take a short 10 minute break before we move to the next part of our workshop

39. Interactive Activity • Each table will represent a practice • You will all work together to develop a patient/family engagement (PFE) strategy for your practice • Please see the interactive activity handout at your tables and complete the questions as a group to develop your PFE strategy • Please assign someone in the group as the recorder and please assign someone who will present your strategy to our larger group • We have flip charts set up to record your information • We will be available as you work through your activity to answer any questions

40. Group Presentations/Discussion

41. Questions and Answers

42. Thank you! Hala Durrah, MTA haladurrah@gmail.com 202-257-9919 Renee Turchi MD, MPH, FAAP Rmt28@drexel.edu 215-427-5331