Patients, Persistence, and Partnership: Creating and Sustaining Patient and Family Advisory Councils in a Hospital Setting
Sustaining an Established Council
A council is considered established when it enters its second year and has named a patient advisor as a co-chair. Established councils have undertaken projects such as improving the layout of the whiteboards in patient rooms and providing feedback to staff on how to manage challenging patients. In addition, established councils may be tapped when service lines without a PFAC seek to gather advisor feedback for a project. For example, one of our established councils has provided feedback on two patient safety research projects.
Councils are sustained by continually engaging advisors in projects that are of value to them, both in their department and hospital-wide. Advisors should be given the opportunity to prioritize and set new council goals. One of the overarching goals for all our PFACs is to improve communication between patients and staff. Councils at this stage often participate in grand rounds or attend staff meetings to share their narratives, enabling providers to understand their perspective. The council can also be engaged in grant-funded research initiatives. Having PFACs involved in various projects allows advisors to bring their narratives to a wider audience and be a part of change from numerous avenues within the hospital.
Patient and Family Advisory Councils in Practice
BWH has 16 PFACs in various stages of growth. To illustrate the variety in council structure and function, we describe 3 PFACs below. Each has unique composition and goals based on the needs of service line leadership.
Shapiro Cardiovascular PFAC
The Shapiro Cardiovascular Center, a LEED silver-certified building and with private patient rooms that welcome family members to stay with their loved ones [4], opened in 2008. The chief nursing officer felt the care provided in this new space should promote and embody PFCC. With the assistance of the Center for Patients and Families, the associate chief nursing officer was charged with creating the Shapiro Cardiovascular PFAC. Launched in May 2011, this PFAC provides input to improve the patient experience for inpatient and ambulatory care housed in the Shapiro Center.
The Shapiro PFAC originally consisted of medical/surgical cardiac and heart transplant patients; renal transplant recipients and donors later joined. Initially, this council worked on patient/visitor guidelines for the inpatient units. As the council became more experienced, advisors interviewed nursing director candidates for cardiac surgery ICU and organized two PFCC nursing grand rounds. These grand rounds featured a panel of Shapiro advisors sharing their perspective of their hospital care and reflections on their healing process. This council has also provided feedback on hospital-wide projects, such as the refinement of a nursing fall prevention tool and the development of patient-informed measures of a successful surgery. As advisors became more experienced, they were recruited by the executive director to be part of other committees and research projects.
The Shapiro PFAC is one of the oldest councils at BWH, consisting of 12 advisors and 3 staff members, with most of the inaugural advisors remaining. Because the council chair has changed twice since 2011, this council does not have a formal advisor co-chair but the council remains a cohesive team as they work in partnership with the newest chair. To sustain this PFAC, leadership has consistently engaged the council in operational projects. For example, the associate chief nursing officer has suggested advisors be part of unit-based councils composed of staff nurses and educators who work to improve patient care within their unit. Advisors have also been invited to participate in staff and nursing director meetings to share their narratives and allow staff to reflect on the care they provide patients.
LGBTQ PFAC
In the fall of 2014, BWH held an educational Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ) patient experience forum prompted by a complaint from the wife of a maternity patient that the care they received was not patient/family-centered. During this panel discussion, 4 LGBTQ patients described their care at BWH, including what went well and what their providers could have done better. There was an acknowledgement by a majority of providers in the audience that they did not receive training on inclusive care for LGBTQ patients and their families. The providers identified the need to be educated on LGBTQ issues and care concerns, and their desire to work towards creating a warm and inclusive environment that better serves LGBTQ patients. This organic request for education was met with enthusiasm from the panel participants and led to a commitment to form an LGBTQ PFAC at BWH.
The LGBTQ PFAC is co-chaired by the executive director of the Center for Patients and Families and a LGBTQ patient advisor who receives his care at BWH. It was important for this council to be co-led by an advisor from the beginning to acknowledge and validate LGBTQ experiences of care which had previously been marginalized. Because LGBTQ patients interact with all service lines at BWH, it made sense that a central operational leader with significant experience listening and responding to the patient voice co-leads the group. This council is composed of LGBTQ patients, their caregivers/partners/spouses, BWH LGBTQ staff that also receive healthcare from BWH, and LGBTQ academic stakeholders who provide historical contextualization to inform change.
The LGBTQ PFAC began the preparation phase in April 2015 and launched as a hospital-wide council in October 2015. This launch was widely publicized so that all BWH employees would know this council was created to elevate LGBTQ patients and caregivers into the mainstream hospital consciousness. The goals for this year are to partner with the existing LGBTQ employee group to create a standardized LGBTQ provider directory, educate staff on the healthcare needs of the community, and promote educational awareness, compassionate understanding, and improved care for transgender patients. As this council matures into the established stage, new projects will be taken on in line with the needs seen by members.
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.
