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

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

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

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

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

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

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

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

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

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

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

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)

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

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

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

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

Name/logo Before:Name/logo After:

Brochure Before: Brochure After:

Brochure Before: Brochure After:

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

Jacquie’s story:

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

Agenda Before:

Agenda After:

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

Meeting Roles:

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

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

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

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