Reports From the Field

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


 

References

Women’s Health Council

The Women’s Health Council is a unique PFAC established in 2012. The council serves a population of trauma survivors cared for by the Coordinated Approach to Recovery and Empowerment (C.A.R.E.) clinic at BWH, also founded in 2012. Patients who receive care in this clinic have experienced violence and trauma, including domestic and sexual violence, child maltreatment, and human trafficking. Due to previous experience leading a PFAC, the C.A.R.E. Director understood the importance of patient input and engaged patients as advisors while forming the clinic.

The C.A.R.E. clinic serves both men and women but the majority of survivors served are female; thus, the patient advisors on its PFAC are all female. To recruit advisors, clinicians, and social workers at the clinic refer potential candidates to the C.A.R.E. Director, who then interviews them. The criteria for advisors for this council include being a female survivor of violence and trauma, being physically and mentally able to serve, and able to participate in a way that does not re-traumatize them. There are currently 14 advisors on the council with a goal to grow to 30 advisors. Experience has shown that members become busy with family, school and careers and may need to step away for short periods of time; thus, the council seeks to continually recruit to ensure robust membership.

Instead of the usual monthly scheduled meetings, this council holds “meetings on demand.” Advisors are polled via email to find a time in the near future that works for the group. The PFAC generally uses a web conferencing platform for their meetings and has an in-person meeting once or twice a year. Also unlike other councils, this council does not require their advisors to share their personal narratives; it is up to each advisor to decide what to share.

This council has accomplished numerous goals since its inception, including its first task of giving the C.A.R.E. clinic its name. The council has provided feedback on the development of the C.A.R.E. brochure and website and serves as key informants in all aspects of policy and procedures for the C.A.R.E. clinic. Additionally, they have provided input on how to create a safe environment for patients and screen patients to identify a victim of violence or human trafficking [5]. This council has been sustained by the strong community fostered by the director and projects led by the advisors, as each advisor has a vested interest in ensuring the clinic provides a safe environment for patients seeking care. This year, the council is hoping to host experts from the Boston Health Commission to share best practices in providing services to victims of abuse and violence.

Lessons Learned

The BWH Center for Patients and Families has encountered challenges when creating and sustaining PFACs, such as recruiting advisors from diverse ethnic, cultural, and economic backgrounds. Currently, our advisor population is primarily comprised of Caucasian patient/family members from middle and upper economic backgrounds, though it has increasingly diversified as the program has grown. We believe the lack of representation from other backgrounds is due to scheduling difficulties, the lack of payment for advisors, visibility of the PFAC program, and, potentially, cultural norms that promote deference to medical expertise. We have worked to increase PFAC diversity by asking providers to specifically seek out and nominate patients that will broaden our reach as a council.

Pages

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