Patients, Persistence, and Partnership: Creating and Sustaining Patient and Family Advisory Councils in a Hospital Setting

Council Preparation

Preparation of the PFAC occurs once hospital or service line leadership has identified a need for and is committed to having a PFAC. Leadership contacts the executive director of the  Center for Patients and Families to discuss the strategy and vision of the council. The executive director describes the attributes sought in an advisor and the core principles of patient- and family-centered care. This discussion includes recruitment methods, meeting logistics, and  who will  serve as council chair. The council chair should be in a leadership role and willing to champion the PFAC for their service line. The executive director discusses what is being planned with relevant clinicians and staff at a staff meeting in order to foster buy-in and involve them in the council recruitment process.

The BWH Center for Patients and Families has adapted Institute for Patient- and Family-Centered Care  recommendations for PFAC logistics and structure [3]. Councils generally meet monthly for 90 minutes excluding August and December. As volunteers, our advisors receive no monetary compensation but receive complimentary parking and are often provided meals. Advisors are asked to commit to a 3-year term with the understanding that personal issues can arise and their commitment may change; after their term, they are welcome to continue. We recommend to leadership that PFACs be comprised of no more than 1 staff member to every 4 advisors. This ratio seeks to address any potential power imbalance and promotes a feeling of ownership of their council . The project manager works with leadership in creating council guidelines, including the council’s goals, expectations, and each member’s role.

Patient/Family Advisor Recruitment

We ask service line providers and staff to nominate patients and family members they believe would be suitable advisors. The attributes we look for in an advisor include their ability to: (1) share personal experiences in ways that professional and support staff can learn from, (2) see the big picture of a challenge or scenario and give advice using the lens of the patient or family member, (3) be interested in more than one agenda item, (4) speak to multiple operational topics, (5) listen to other points of view and be empathetic, (6) connect with other advisors and staff, and (7) have a good sense of humor. Candidates with both positive and negative experiences are sought so that we can learn and improve from their experience [2].

To find advisors with these attributes, we ask providers to review their schedule and think about who they look forward to seeing or connect with on a personal level. This method has proven successful at producing candidates that have the attributes we seek. It is vital that the patients we recruit are able to see past their own personal experiences to understand broader objectives and how they fit into the bigger picture, enabling them to participate in a variety of projects and committees. There are no educational or specific skill requirements to become an advisor; the only requirement is that candidates must have experience as a patient or caregiver (family member) of a patient at BWH.

Recommended patients receive a letter notifying them that they have been nominated to be an advisor on a PFAC by their treating clinician. The project manager contacts potential advisors to see if they are interested and provides a brief description of PFACs and the role of patient/family advisors. The project manager emphasizes the importance of patient/family input to the hospital, describing the opportunities patient/family advisors have to contribute their expertise as a patient or caregiver to decisions and projects that will positively affect future patient care. Examples of past successful PFAC projects are shared to give a sense of the importance of the advisor role within the hospital and the appreciation hospital leadership has for PFAC contributions. The project manager reiterates that their clinician nominated them to the council to encourage the candidate to feel that their voice deserves to be heard.

Interested candidates are interviewed by phone by the team. Each candidate is asked the same questions: (1) How long have you been a patient in the clinic or unit?; (2) Describe your experiences in this clinic/service; and (3) Describe what works well and what could be improved in your care. During the interview, we listen to their personal narrative and their perspective on their care, which allows us to assess whether they have the attributes of a successful patient/family advisor. Candidate’s narratives illustrate how they would share their concerns, contribute to solutions, and if they have the ability to see beyond their own personal agenda. We also listen carefully for themes of tolerance, operational insight, empathy, and problem-solving capabilities. Interviews take about 15–20 minutes, depending on how many follow-up questions we have for the candidate and if they have questions for us.

After the phone interview, the team determines whether the candidate would be an appropriate patient/family advisor. If there are any concerns and more information is needed, the project manager reaches out to the staff and contacts the candidate to invite them for an in-person interview. Of the interviewed candidates, about 75% to 80% are invited to join. Candidates who are not chosen are generally unable to clearly articulate issues they see within the hospital/clinic, may have personal relationships with the staff (ie, friends with the physician), or cannot see pass their own issues and are inflexible in their thinking. Those not chosen receive a note thanking them for their time and interest. The candidates chosen to be advisors are on boarded through BWH volunteer services and must attend a 3-hour BWH volunteer orientation, be HIPAA compliant, and be cleared by occupational health before receiving their advisor ID badge and beginning service.

Council Launch

Once the advisors have been recruited and oriented, the council enters the launching stage, which lasts from the council’s first meeting until the 1-year anniversary. The first meeting agenda is designed to introduce staff and advisors to each other. Advisors each share their health care narratives and the staff shares their motivations for participating in the council. The council chair reviews the purpose and goals of the council.

During the first year, the council gains experience working together as a team. Council projects are initially chosen by the council chair and should be reasonably simple to accomplish and meaningful to advisors so that advisors recognize that their feedback is being heard and acted on. Example projects include creating clearer directional sign-age, assessing recliners for patient rooms, and providing feedback on patient handouts to ensure patient friendliness.

As the council advances, projects can be initiated by the advisors. This process is facilitated when an advisor is added as council co-chair, which usually occurs at the end of the first year. Projects often arise from similar concerns shared by advisors during the recruitment interview process.