Patient and Family Advisory Councils

1. Patient and Family Advisory Councils Audio Conference Call July 21, 2009 www.macoalition.org

2. Patient and Family Advisory CouncilsProgram Committee Susan Abookire, MD, MPH, Mount Auburn Hospital Effie Pappas Brickman, MPA/H, MA Coalition for the Prevention of Medical Errors Linda Burgess, Consumer Health Quality Council, Health Care for All Maureen Connor, MPH, RN, previously at Dana Farber Cancer Institute Christine Combs, MA, RN, Emerson Hospital Patricia Crombie, MSN, RN, Cambridge Health Alliance Ken Farbstein, MPP, Consumer Health Quality Council, Health Care for All Tracy Gay, JD, Betsy Lehman Center, MA Department of Public Health Anuj Goel, JD, Massachusetts Hospital Association Paula Griswold, MS, MA Coalition for the Prevention of Medical Errors Deborah Hoffman, MSW, LCSW, Dana Farber Cancer Institute Pamela Mann, Kenneth Schwartz Center Cynthia Medeiros, previously at Dana Farber Cancer Institute Karen Nelson, MPA, Massachusetts Hospital Association Randy Peto, MD, MPH, Baystate Medical Center Lynnie Reid, Children’s Hospital Brenda Riordan, MPA/H, OTR/L, Northeast Health Systems Nicola Truppin, JD, Consumer Health Quality Council, Health Care for All Deborah Wachenheim, Health Care for All Susan Shaw, Children’s Hospital Alec Ziss, Consumer Health Quality Council, Health Care for All

3. Patient and Family Advisory Councils Overview Maureen Connor, RN, MPH July 21, 2009

4. Patient and Family Advisory Councils Creating a patient and family advisory council can provide an infrastructure to support patient and family centered care.

5. Patient and family focused versus patient and family centered care • In focused care, interventions are done to and for patients and families rather than with them • In centered care, patients and family members are active participants Institute for Family Centered Care

6. Patient and Family Advisory CouncilsAgenda Introduction to Patient and Family Councils and Paula Griswold the Audioconference Series Maureen Connor Massachusetts Regulations • Elements and Implementation Timetable Tracy Gay Council Models & Composition of a Council: Two Examples • A Centralized Approach: Cambridge Health Alliance/Somerville Hospital Patricia Crombie • A Decentralized Approach: Dana Farber Cancer Institute Deborah Hoffman Promoting a Positive Start: Strategies for Leadership and Staff • Keys to success Marlene Fondrick • Role of Executive Leaders • Strategies for starting and staffing Supporting You in this Work • Resources to support hospitals and implementation Maureen Connor • Roadmap to Implementation • Work Plan Development • Next Steps Questions and Answers

7. Patient and Family Advisory CouncilsFaculty Paula Griswold, MS, Executive Director Massachusetts Coalition for the Prevention of Medical Errors Tracy Gay, JD, Deputy Director Betsy Lehman Center for Patient Safety and Medical Error Reduction, Massachusetts Department of Public Health Maureen Connor, MPH, RN, formerly of Dana Farber Cancer Institute Deborah Hoffman, MSW, LCSW, Associate Director, Shapiro Center for Patients and Families Dana-Farber Cancer Institute Pat Crombie, MSN, RN, Site Administrator/Senior Nursing Director Cambridge Health Alliance/Somerville Hospital Campus Marlene Fondrick, MSN, RN, Program Associate Institute for Family Centered Care

8. Patient and Family Advisory Council Regulations Tracy Gay, JD Deputy Director Betsy Lehman Center for Patient Safety and Medical Error Reduction July 21, 2009

9. Regulatory Process • Chapter 305 of Acts of 2008, August 2008 • Regulations introduced to Public Health Council (PHC) February 2009 • Public Hearings March 23rd/30th • Public Comment Period ended April 6th • Regulations adopted by the PHC May 13th • Regulations effective June 12th • Printed in the Massachusetts Register July 24th

10. Patient and Family Advisory Councils (Paces) • Requirement of all hospitals licensed under 105 CMR 130.000 • Acute care, pediatric, rehabilitation and long term care hospitals.  The requirement does not apply to public hospitals and mental health hospitals. 

11. Patient and Family Advisory Councils • Work plan publically available September 30, 2009 • Established PFAC by October 1, 2010 • Annual reports publically available beginning October 1, 2010 • Meet at least quarterly • Minutes transmitted to the hospital’s governing body • Fifty percent of PFAC members current or former patients or family members and representative of the hospital community

12. Patient and Family Advisory Councils • Regulations require a hospital-wide PFAC • To the extent allowed by state and federal law, a PFAC shall advise on: • Patient and provider relationships • IRBs • Quality improvement initiatives • Patient education on safety and quality matters

13. Patient and Family Advisory Councils • Development of policies and procedures to: • Define PFAC goals • Membership • Orientation, training and continuing education • Roles • Responsibilities

14. Patient and Family Advisory Councils Questions, email or call: Tracy Gay at tracy.gay@state.ma.us, or (617) 624-5424. Thank You

15. “I can’t believe someone from a hospital is calling to ask me what I think!” Cambridge Health Alliance Somerville Hospital Patient and Family Advisory Council

16. Background • Inspired by presentation given to CHA senior leadership in 2003 by Jim Conway and Pat Reid Ponte • In 2005 began literature review and started recruitment inquiries • Intensified focus on patient/family-centered care and developed tool kits for managers

17. Reactions to Concept of Learning from Patients and Families, 2003 • Explained value of involving patients to MD planning a new service • Response: Great idea! • Similar explanation given to another MD, also planning a new service • Response: What do the patients know?

18. Recruiting: An Adventure • PCP referrals: 1 patient, 1 daughter of ICU patient • Phone call inquiry about GI experience • Cultural competency patient panel participant • Hallway greeting • Referrals by community activists • Ladies Aid

19. Lessons Learned from Recruitment • Requires personal contact. • No response from flyers in 4 languages or large posters. • Save names from previous encounters. (Patients delighted to be remembered.) • Meet with people on own territory. • Outreach to community activists. (They know everyone!)

20. Getting Started, March 2006 Overall goals and ongoing agendas established by Leadership Steering Group: Sr. Nursing Director/Site Administrator, Medical Director, and Quality Consultant Other permanent staff members: Hospitalist; ED Nurse Manager

21. 1st Meeting, March 2006

22. Composition of Group • 14 members; 10 are founding members • 11 women and 3 men • Diversity of ages (30-87) • Diversity of ethnic backgrounds (Salvadoran, African-American, White, Brazilian, Indian) • 11 are patients • Daughter of ICU patient • 2 are community members interested in their local hospital

23. Interpreter Logistics • Interpreter calls Council member to translate agendas/remind re: meetings • Same interpreter accompanies her to every meeting • They use simultaneous interpreting equipment so member can participate fully and group isn’t distracted

24. Logistics • Member notebooks • Meet monthly, except for August and December • 5:30-7:00 pm • Light supper is served • Budget: notebooks; suppers

25. 1st Impressions What’s welcoming and what’s not? • What is your first impression as you walk in? • What do you notice about the physical environment? • What do you notice about the “psychological environment”? • What feels reassuring? • What bothers you? • What improvement suggestions do you have? Keep your antennae out!

26. What’s Welcoming…Examples • I like the new renovations. • People are warm and friendly. • Signage---I am confused where to go. • The Radiology waiting room could use more artwork. • Posters for Nursing Day show unity and team spirit.

27. Sounding Board • Key goal: Help staff realize they can learn from pts, families and community members, and that their learning can inform the way they do their work. • Staff leave with a deepened understanding, and the realization that the Advisory Council can be a resource for them.

28. Working with Sounding Board Guests: Prep • Meet in advance to help them focus and to allay their anxiety: * What are you curious about learning? * Want input on your overall services? * Ideas about an improvement working on? * Want help with specific HCAHPS or Press-Ganey questions? * How might you pose your questions clearly?

29. Working with Sounding Board Guests: Follow-Up • Meet after Council meeting to help them debrief and plan how to use their learning. • Ask them to let the Council know how they are using the group’s ideas---- either by returning briefly to a meeting or in writing.

30. Sounding Board Guests • Discharge Team • Laboratory • Medical Library • Food and Nutrition • Hospitalists • Medical/Surgical RN’s • Geriatric Specialty Unit • Quality Management

31. Sounding Board Guests • Women’s Health Center • Medication Reconciliation Team • GI Center • Housekeeping • Registration • Marketing • Emergency Dept.

32. Input into Action:Sounding Board Examples Service Standards: • Provided input during development of new CHA Service Standards • Held several discussions about “ideal culture of service” to combine Council’s ideas with staff ideas • Members use assessment form when they come as patients or with relative/friend; form evaluates quality of Service Standards behaviors • Quality Consultant reviews forms with managers of departments assessed in form; managers then discuss patient feedback with their staff

33. Service Standards Assessment • Welcoming • Informing • Noticing • Expressing caring and concern

34. Service Standards DVD • Idea sprang from watching faces of Sounding Board staff • Goal: capture power of face-to-face contact • 9 Advisory Council members tell stories that illustrate meaning of particular Service Standards

35. Input into action, cont. Medication Reconciliation Team: • Team developing discharge medication lists; asked group to evaluate forms being considered • Group gave suggestions to clarify language and format • Ideas incorporated into final version, now used at 3 hospital campuses

36. Input into Action, cont. Discharge Improvement Team: • Discharge Team wanted input on proposed discharge document • Council suggested changing order of information presented to make document clearer • Bilingual members gave suggestions to improve form for limited English proficiency patients by using both English and patients’ primary language • Group’s ideas incorporated into design

37. Input into Action, cont. Marketing: • Input given about draft of Somerville Hospital campus services brochure • Input requested during time of change about communication methods for patients and community; ideas used in marketing plan; some members will be featured in marketing materials

38. Anniversary Celebration

39. Anniversary Celebration, Take 2!

40. Key Learning About Working With Council Members • “Seal relationships” between members and Council leaders. • Help members form a solid, caring group. • Build the group’s commitment by being compulsive about follow-up! • Ensure ongoing evidence that group’s input gets translated into action.

41. Accomplishments • Service Standards • Marketing/Communication strategies • Medical Library focus for patients • Parent Advisory Council for the Adolescent Assessment Unit • Pain Management Program • Support for Geriatric Psychiatry Families • E.D. Patient Partner role • Registration customer service • Culturally appropriate meals

42. Accomplishments • DNKA Rates • Specific HCAHPS questions • Medication Reconciliation • Discharge Process • Hospitalist welcome letters • Somerville Hospital brochure • Two family waiting rooms • Housekeeping assessments • New bus shelter

43. What’s Next? • Continue involvement in CHA changes: * communication/marketing strategies * planning for SH transformation * “community ambassadors” • Develop patient/family educator program. (Service Standards DVD to Intern orientation, with Council members there for discussion) • Use DVD broadly to involve more staff. • Find opportunities for members to be more involved outside of our meetings.

44. Reflections on Being a Memberof the Advisory Council, 3-08 • “By describing our experiences we change staff perceptions of patient care.” • “I feel like a mystery shopper now when I come in---I have a different perspective. I’m a better patient, now.” • “When you asked us at the beginning what we wanted to contribute, you made us feel part of the hospital.”

45. Reflections, cont. • “By telling our stories, we have deepened the understanding of our guests.” • “By describing our perceptions of the hospital, we have helped to increase understanding of common community perceptions.” • “In Sounding Board discussions we have offered our ideas about ways to create a hospital environment that is attuned to the needs of patients and families.”

46. Reflections, cont. • “We love coming every month, and that says something, because who wants to go to a 5:30 meeting after work! The reason we are so excited about participating is because we actually see results come about from our suggestions, and it makes us feel empowered. The healthcare arena can make us feel powerless and scared. Our Council gives us a real sense that we can impact and change some things that pertain to our healthcare.”

47. A Journey in Patient- and Family-Centered Care: The Dana-Farber Cancer Institute Deborah Hoffman, MSW, LCSW Associate Director, Center for Patients and Families Dana-Farber Cancer Institute

48. Presentation Outline • Dana-Farber’s journey • Creating a sustainable infrastructure of patient and family involvement • Examples of involvement • Creating Councils in other organizations • Challenges • Benefits

49. Impetus for Change • 1995: Response/lessons from sentinel patient safety event • 1996: Longwood Medical Area Integration of Dana-Farber/Partners Cancer Care • BWH: All inpatient cancer care and emergency services • DFCI: All outpatient cancer care • Patient and family members voice concerns

50. DFCI and BWH Response • Surveys and focus groups were not enough • Leadership buy-in (Board, CEO, CNO, COO, CMO) • Consultation with the Institute for Family Centered Care • Town meetings: patients, families, staff