Patient and Family Advisory Council Tool Kit

1. CARE BETTER Patient and Family Advisory Council Tool Kit

2. CARE BETTER Patient Family Advisory Committee Defining the PFAC

3. What is a Patient and Family AdvisoryCouncil (PFAC)? CARE BETTER • Comprised of patients, families, clinicians, staff and administrators • Serves as a voice for patients and family members • Works together to deliver the highest quality care possible for our patients • Provides shared expertise!

4. Purpose/Responsibility of PFAC CARE BETTER • Serves as advisory resource to administration and staff of the organization or one of its programs. • Promotes improved relationships between patients, families, and staff. • Vehicle for communication between patients, families, and staff. • Venue for patients/families to provide input into policy and program development. • Opportunity for patients/families to review recommendations referred to the council by staff or administration. • Opportunity for patients/families to actively participate in the development of new facilities and programs. • Channels information, needs, and concerns to staff and administration. • Actively helps implement changes. • Provides input into the educational program for staff. • Collaborates in the planning and operation of specific programs. • Provides opportunities for staff to listen to their customers. • Provides a safe venue for patients/families to provide input in a setting where they are receiving care. • Serves as a coordinating mechanism for patients and families.

5. Benefits of PFAC CARE BETTER For PCP For Patients and Families Gain a better understanding of the healthcare system. Appreciate being listened to and having their opinions valued. Become advocates for the patient and family-centered healthcare in their community. Understand how to become an active participant in their own healthcare. Develop close relationships with other members on the council. Provide an opportunity to learn new skills (facilitating groups, listening skills, telling their story). • Provide an effective mechanism for receiving and responding to consumer input. • Result in more efficient planning to ensure that services really meet consumer needs and priorities. • Lead to increased understanding and cooperation between patients, families and staff. • Promote respectful, effective partnerships between patients, families and clinicians. • Transform the culture toward patient-centered care. • Develop programs and policies that are relevant to patient’s and families’ needs. • Strengthen community relations. • Leads to better self-management of chronic conditions and improved adherence to medication regimens.

6. Patient and Family Advisory CouncilsMake Sense! CARE BETTER • Patient satisfaction surveys can provide retrospective feedback • Need is for real time, ongoing patient and family feedback into organizational initiatives • More than just a snapshot!

7. The Voice of the Patient and FamilyMember Can Make a Difference CARE BETTER • Increase patient satisfactions scores • Improve safety and quality • Reduce costs by streamlining care • Improve the experience for patients and family members • Increase work satisfaction for staff and physicians

8. CARE BETTER Developing the Council Structure Guiding Principles Bylaws Staff Membership PFAC Composition Patient/Family Member Compensation

9. Guiding Principles to PFAC Structure: Apply Patient and Family Centered Care CARE BETTER • Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care. • Information Sharing. Health care practitioners communicate and share complete an unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making. • Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose. • Collaboration. Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation and evaluation; in facility design; and in professional education, as well as in the delivery of care.

10. Develop PFAC Operating Guidelines/Bylaws CARE BETTER Among the issues that should be addressed in the bylaws are: • Bylaws are important because they provide the framework for perceived goals and objectives. • Bylaws also legitimize the group and help promote a feeling of an established, well-organized group. • Developing bylaws can be time consuming, however, reviewing bylaws from existing advisory boards can save you time. They can be adapted and amended to suit your group’s specific needs. • Purpose of the group • Goals and responsibilities • Structure of the group • Size of the group • Membership qualifications • Nominations and elections of members • Duties of members • Committees and task forces • Voting procedures • Quorum • Agendas • Reporting mechanisms • Guidelines of authority • Confidentiality • Amendment procedures

11. Practice Staff Membership of PFAC CARE BETTER • Staff participation • 2 to 3 or more patients/family members to 1 staff • Include physician leadership • No more than 3-4 staff should have a permanent place on the council. • Other staff can attend depending on topics for discussion. Staff should have easy access to the council. • Too many staff will result in patients/families not feeling it is their council.

12. Patient/Family PFAC Composition CARE BETTER • Composition should reflect their constituencies and practice size and make-up • Small single specialty practice: ~ 3-5 patients • Medium multispecialty practice: ~ 5-8 patients • Large multispecialty practice: ~ 8-15 patients • Smaller groups encourage greater discussion and participation by all members. • Most people are more comfortable speaking in a smaller group. • More challenging to facilitate larger groups and obtain input from everyone. • Larger groups will provide a wider range of experiences and input. • Provides broader representation of diverse populations.

13. Terms of PFAC Membership CARE BETTER • Terms of membership - Consider length of term (2-3 years to maintain consistency) with rotation being intermittent to avoid turning over everyone at once. • Patient Chair/Co-chairs - Consider length of term chairperson position(1-2 years to maintain consistency) • Consider other office staff depending on topics for discussion.

14. Patient/Family PFAC Compensation CARE BETTER • Compensation of time, expertise, and expenses for patients and families. • Consider remuneration for patients and families in the form of a small amount to cover travel expenses, baby-sitting, or other costs that might be incurred. • Patients and families may have difficulty joining the council if they are not given some assistance. • Designate one staff member to be responsible for reimbursement and other practical or logistical issues for family advisors.

15. CARE BETTER Meeting Requirements Meeting Requirements PFAC Membership Makeup

16. Meeting Requirements CARE BETTER • Frequency - Quarterly is suggested. Less frequent - lose momentum and involvement. Too frequent, members will have trouble attending. • Days/times - Let the council select but may be dependent on room availability. Consider convenience of both patients/families and staff. • Agenda - The council should develop a list of issues they wish to deal with and “own” the agenda. Staff or other patients/families can add to the agenda. • Minutes should be kept and distributed widely so the activities of the council are made aware to as much of the organization as possible.

17. Patient/Family PFAC Member Makeup CARE BETTER • Recruitment – Ask staff for suggestions, post and advertise within the office or send direct mail to present and former patients. • Seek patients and families who represent a variety of clinical experiences such as type of illness, families, and programs utilized. Include patients and families who have both positive as well as negative perceptions of experiences. • Seek patients and families who reflect the diversity of those served by the practice—racial, cultural, religious, socioeconomic, age, educational background, and a variety of family structures. • Seek individuals and families who are able to share insights and information about their experiences in ways that others can learn from them. • Seek individuals and families that see beyond their own personal experiencesand show concern for more than one issue or agenda.

18. CARE BETTER Getting Started Embracing change Critical Success Factors Potential Challenges What Do You Need From the PFAC Steering Committee

19. Embracing Change CARE BETTER • Involves a cultural shift • Hearing about expectations of patients and families • Listening to stories of patients and families • Altering expectations of healthcare professionals • Becoming comfortable with uncertainty • Honoring each other’s expertise • Understanding . . . Then bridging the gap

20. Critical Success Factors CARE BETTER • Critical Success Factors • Clearly define the role of the PFAC • Choosing the right patients, staff and family members • Ongoing leadership commitment • PFAC is perceived as credible and viable • Select a coordinator with an understanding of patient and family-centered care • Be prepared to explain how success is measured • Need the engagement of physicians and staff

21. Potential Challenges CARE BETTER • Lack of commitment from staff, patients, families, leadership. • Fear that patient’s and families’ suggestions will be unreasonable. • Lack of a guiding vision. • Scarce fiscal resources and competing priorities. • Tendency to implement a top-down approach to initiating partnerships with patients and families.

22. What Do You Need From the PFAC Steering Committee CARE BETTER • Become a champion for the PFAC • Commitment to transparency and openness • Assistance to break down barriers • Resource allocation (coordinator, leadership, front-line staff, clerical support, financial) • Referrals of patients/families to PFAC

23. CARE BETTER Appendix SAMPLE: PFAC Budget SAMPLE: PFAC Bylaws SAMPLE: Preplanning Check List SAMPLE: Timeline Additional Resources

24. SAMPLE: Budget for PFAC CARE BETTER Staff Time: • PFAC coordinator (Care Coordinator) • 2-3 hours per week for Planning and Initiate for 12 weeks • 1-2 hours per month for on-going PFAC Expenses: • Meals for people attending 1 or 2 meetings @ 12.95 per person • Office supplies, copies for presentations, agendas, educational materials, printing of PFAC brochures @$5.00 per person • Stipend for patient/family members @$25.00 per person

25. SAMPLE: PFAC Bylaws CARE BETTER • Section 3. Participate: Provide patient and family member representation to committees and work groups including, but not limited to patient safety, quality improvement, facility design, service excellence, ethics and education. • Section 4. Identify: Identify existing best practices in patient-family centered care and explore ways to share and replicate those across the organization. • Section 5. Represent: Represent patient and family perspectives about the healthcare experience at Practice Nameand make recommendations for improvement. • Section 6. Educate: Collaborate with Practice Namestaff to facilitate patient and family access to information. Influence and participate in Practice Namestaff orientation, patient and family education and discharge/transition planning. • Section 7. Evaluate: Evaluate the role of the PFAC in improving outcomes for patients and families. Article 4. Structure and Membership • The PFAC will consist of approximately six members representing the diversity of the Practice Namecommunity. In addition, up to numberPractice Name staff members may also serve on the PFAC. The structure of the council may change over time. Article 1. Overview • The Practice Name Patient and Family Advisory Council (PFAC) will provide a formal communication vehicle for patients and families to take an active role in improving the patient experience at Practice Name. The council will focus on discovering what programs and practices represent the most successful patient and family experience within Practice Nameand will help replicate and share those best practices across the community. Article 2. Mission Statement • Guided by Practice Name’svision, mission and values, the PFAC is dedicated to ensuring that our patients and families have a safe, quality, compassionate and supported healthcare experience. Article 3. Goals • Section 1. Advise: Work in an advisory role to enhance patient-family centered care initiatives at Practice Name. • Section 2. Support: Support staff and Practice Nameleadership in their patient-family centered activities and initiatives. Act as a sounding board for implementation of new programs and existingprograms across Practice Name .

26. SAMPLE: PFAC Bylaws CARE BETTER Article 6. Roles and Responsibilities • Section 1. Roles and Responsibilities for Patient/Family Members: • Encourage greater understanding of the healthcare experience through the eyes of the patient and family • Actively participate in establishing a strong partnership between Practice Name and staff, patients and families • Honestly share perceptions and expectations concerning health care at inpatient and outpatient areas • Evaluate practices, programs and services and provide recommendations that respond to the unique needs of the patient and family based on patient-family centered care principles • Channel needs, concerns and recommendations to the Practice Name leadership team for review and direction • Contribute to the education of present and future healthcare providers • Provide a vital link between Practice Nameand the community • Maintain confidentiality at the council meetings and outside the meetings • Respect the collaborative process and the council as the forum to discuss issues • Give input based on your own experience but be able to step out of your individual perspective. • Collaboratively work on projects identified by the council that will improve patient-family centered care at Practice Name • Participate on other Practice Namecommittees and work groups as appropriate • Attend all PFAC meeting or notify a staff member in advance if unable to attend Article 5. Nomination and Application Process Recruitment of PFAC members is initiated by referral from all disciplines including Practice Name physicians, nurses, other healthcare providers and professional staff. • Section 1. Membership Criteria: Members are selected based upon the following criteria: • Recent experience as a patient or family member at Practice Name. • Ability to represent patient care experience • Willingness to work collaboratively and in an advisory role • Good listening skills • Ability to interact well with differing groups of people and differing opinions • Respect of others’ perspectives • Positive, constructive attitude • Ability to maintain confidentiality • Ability to participate in a consistent and agreed-upon schedule of meetings and potential subcommittee efforts • Commitment to serve for a two-year term with potential to renew or step down at the end of the term • Section 2. Membership Selection: Prospective members maybe interviewed. Once selected, the applicant receives an acknowledgement letter from staff of the PFAC and a thank you letter is sent to the referring individual. • Section 3. Terms of Appointment: • Council members are granted two-year terms • Council members may request to be re-appointed • Resignation will be submitted in writing or via email to the Practice Name PFAC • Vacancies may be filled during the year as needed • Council members may be removed from their positions due to their inability to participate as needed or comply with the membership criteria

27. SAMPLE: PFAC Bylaws CARE BETTER Article 8. Confidentiality • PFAC members must not discuss any personal or confidential information revealed during a council meeting outside of those sessions. Council members must adhere to all applicable HIPAA standards and guidelines. If a member violates these guidelines, a staff member will remind them of the guidelines. Repeated violations may result in re-evaluation of membership Article 9. PFAC Meetings • Meetings will be held Frequency on a day and time that best meets the schedules of members. Each meeting will be 1.5-2 hours in length. • Section 1. Agenda: Meeting agenda will be set by the designated staff/employee member and distributed to the membership prior to each session. • Section 2. Meeting Minutes: The designated staff/employee will distribute the minutes in a timely manner to all PFAC staff and patient/family members. Council minutes will be retained for a minimum of five years. • Section 3. Attendance: It is expected that the members of the council will make every attempt to attend every session during their term. Participation will provide the most effective meeting and make the most impact on the patient experience at Practice Name. Attempts can be made to accommodate teleconference call arrangements if necessary. If a member is not able to make one or more sessions, notification to a staff member as soon as possible is expected in order to make any needed adjustments prior to the group meeting. • Section 4. Inclement Weather: Business meetings will be canceled if traveling in becomes unsafe. • Article 10. Termination • The chair and co-chair of the PFAC reserve the right to dismiss any member who is not compliant with the bylaws and guidelines of the PFAC. Article 6. Roles and Responsibilities (continued) • Section 2. Roles and Responsibilities for Staff/Employee Members: • Attend each PFAC meeting • Prepare meeting agendas • Identify, invite, vet and orient potential PFAC members • Facilitate discussions and engage all members • Provide a report back to the PFAC of progress on ongoing projects and any Practice Namechanges of interest to the group • Assist with operations behind the scenes to facilitate meetings and PFAC efforts • Minimize potential barriers to achieving established goals • Be an advocate for the utilization of PFAC efforts and members • Section 3. Roles and Responsibilities of Chair/Co-Chair: • Attend each PFAC meeting • Communicate activities of the PFAC to Practice Nameleadership • Facilitate all meetings • Communicate with PFAC members outside of meetings • Co-chair will support duties of chair in his/her absence Article 7. Orientation and Training • All selected patient and family applicants will receive volunteer orientation and training on applicable Practice Nameregulatory and privacy issues.

28. SAMPLE: Preplanning Check List CARE BETTER

29. Sample Timeline CARE BETTER

30. Additional Resources CARE BETTER • http://c.ymcdn.com/sites/www.theberylinstitute.org/resource/resmgr/webinar_pdf/pfac_toolkit_shared_version.pdf • http://ipfcc.org/advance/Advisory_Councils.pdf • http://www.ipfcc.org/advance/IFCC_Advisoryworkplan.pdf • http://www.ahrq.gov/research/findings/final-reports/advisorycouncil/index.html • For the most recent references on this topic, please see the Institute’s Compendium of Bibliographies at http://www.ipfcc.org/advance/supporting.html. • Webster, P. D., & Johnson, B. H. (2000). Developing and Sustaining a Patient and Family Advisory Council. • Blaylock, B. L., Ahmann, E., & Johnson, B. H. (2002). Creating Patient and Family Faculty Programs. • Jeppson, E. S., & Thomas, J. (1995). Essential Allies: Families as Advisors. • Thomas, J., &. Jeppson, E. S. (1997). Words of Advice: A Guidebook for Families Serving As Advisors.