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Patient and Family Advisory Groups: A “how to” and Lessons Learned PRISM #5 Peter Amann, MD Cynthia Cartwright, MSEd Jacqueline Fuller Gina Marquis Patti.

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Presentation on theme: "Patient and Family Advisory Groups: A “how to” and Lessons Learned PRISM #5 Peter Amann, MD Cynthia Cartwright, MSEd Jacqueline Fuller Gina Marquis Patti."— Presentation transcript:

1 Patient and Family Advisory Groups: A “how to” and Lessons Learned PRISM #5 Peter Amann, MD Cynthia Cartwright, MSEd Jacqueline Fuller Gina Marquis Patti White Beth Wilcox, RN May 8, 2008

2 Agenda for this session:  Pt/Fam Advisory Councils – What? Why? How?  Recruiting members  Holding successful meetings  Lessons Learned

3 What is a Patient & Family Advisory Group?  Group of patients and family members who have experience with a practice, hospital or medical condition  Groups vary in size, form, structure and name  Purpose is the same: To serve as a formal mechanism for involving patients and families in policy and program decision making in health care settings  Based on patient- and family-centered principles

4 Patient- and Family-Centered Principles  People are treated with respect and dignity  Health care providers communicate and share complete and unbiased information with patient and families in ways that are affirming and useful  Individuals and families build on their strengths through participation in experience that enhance control and independence  Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care. Institute for Family Centered Care

5 What it is not--- It is not a support group!

6 Why establish a Patient and Family Advisory Group? Successful services are based on patient and family-identified needs rather than professional assumptions

7 What might a patient/family advisory group do for your practice?

8 How to form a Patient and Family Advisory Group - First Steps:  Get buy-in from leadership (figuratively and literally)  Find a clinical champion  Identify a liaison from the practice  Educate the entire staff  Invite patients/family members (Rule of thumb: 2-3 or more patient/family members to 1 staff)  Establish a time and place to meet

9 Key Qualities of Advisors  A history with you  People who have ideas about improvement and can express them constructively  Concern for more than one issue or agenda  Time to devote to an advisory group  An interest in the topic of healthcare improvement

10 Key Qualities of Advisors  Listen well  Respect the perspectives of others  Speak comfortably and with candor in a group  Interact well with many different kinds of people  Work in partnership with others  Represent the patient and family population you serve including age, gender, ethnic or cultural diversity

11 Recruitment  Clinicians and staff who interact with patients and families  Posters in waiting room  Support groups  Notices in newsletters or community newspapers  Letters to patients  Other patients – word of mouth

12 Education/Expectations  Before the first meeting, send  an orientation to the organization  an overview of the advisory council with goals  Discuss logistics with members  Parking  Childcare  Meal/snack  Provide information about confidentiality (if needed)

13 Role of the Clinical Champion  Lend credibility to the group  Demonstrate openness to new ideas  Convey the value of patient advisors to the practice  Primary role – LISTENING  Facilitate implementation of group recommendations

14 Role of Pt/Family Members  Provide honest feedback  Express opinions  Tolerate uncertainty  Have patience for the process of group building  Consider commitment – short and long term  Reassess involvement periodically

15 Role of the liaison  Help with logistical issues  A trusted professional to whom it is safe to express displeasure or ask questions  Someone who has enough knowledge of the entire process to fill in the blanks  Someone who cares about the process

16 First meeting  Allow ample time to get to know each other/ let each person tell their story  Establish short and long-term goals  Plan one task ahead of time to tackle that day  Schedule a next meeting time  Establish contact information and a liaison

17 Name/logo Before:Name/logo After:

18 Brochure Before: Brochure After:

19 Brochure Before: Brochure After:

20 What is your story? “Stories are how we remember; we tend to forget lists and bullet points” Robert McKee Screenwriting coach

21 Jacquie’s story:


23 Setting an agenda:  Introductions are important  Agendas must not be too long or packed with content  Allow time for discussion  2 hours is a good time frame

24 Agenda Before:

25 Agenda After:

26 Meetings that work:  Start and end on time  Provide a meal or snack, parking and childcare (need a budget!)  Schedule time to re-establish relationships  Meeting roles with rotating leadership  Ground rules including NO JARGON  A skilled facilitator  Openness to questions or misunderstandings  Time to discover important topics that aren’t on the agenda

27 Meeting Roles:

28 Keeping patient and family advisory members involved:  One on one check in  Easy access to the liaison  Contact by the identified leader  Track accomplishments and celebrate successes  Limited tasks between meetings  Flexibility with meeting times/places  Consider how often to meet – continuity with the group vs. overburdening people

29 Lessons Learned:  Senior leadership: make a commitment to collaborate with patients and families  Liaison: Designate a staff member, with patient and family centered knowledge and skills  Invest in orientation and training for patient families, staff, and physicians  Foster mutual respect among staff, physicians, patients and families  Listening goes both ways  Use the patient and family experience as a driver for quality improvement  Begin with easily achievable projects

30 Lessons Learned:  Plan short and long term projects  Celebrate small steps and other successes  Create a variety of ways for patients and families to serve as advisors  Balance: 1 or 2 patient or family members on a committee or task force is not enough!  Recruit patient and family advisors continually  Support the development of patient and family leaders  Select patient and family leadership wisely  Trust the process and work on the process

31 Resources:  Institute for Family Centered Care (Tools for change/free downloads) — Creating Patient and Family Advisory Councils — Tips for Group Leaders and Facilitators — Sharing Your Story: Tips for Patients and Families

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