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Recognizing an Unmet Need: The Role of a Patient and Family Advisory Council in Heart Transplant Care

Leslie Denend
Helen Luikart RN, MS, CCRC
Jen Judas
Stanford University Heart Transplant Program
Palo Alto, CA, USA

With the arrival of new hospital leadership at Stanford Health Care in 2011, the movement to patient and family centered care received a new sense of urgency. This change matched well with discussions that were well underway within the heart transplant program. The Heart Transplant Quality Council, a multi-disciplinary group representing all areas of the heart transplant program and hospital units of care, felt that the active involvement of patients and family members in their care could significantly aid in achieving target quality metrics, such as length of hospital stay and readmission rates, which were just then being formulated. A key element would be a Patient and Family Advisory Council.

The heart transplant program Patient and Family Advisory Council (PAFC) met for the first time in the fall of 2011. The initial configuration included one faculty and two staff members, four transplant patients and one family member. The meeting was the result of a year-long process engaged in by heart transplant program staff to draft initial bylaws, identify and interview over 30 possible candidates, and coordinate heart transplant program plans with the broader initiative of providing patient and family centered care.

The council moved quickly to begin work. Its first activity was to seek out the other major heart transplant centers in the US and ask them if they had a PFAC. If the answer was yes, the council asked a range of questions to develop an understanding of how it was founded, how it operated, and lessons learned. The council soon learned that only a handful of centers had a PFAC and that few were formalized. Of those that did exist, they were young and only beginning to articulate best practices.

Armed with this finding, the council generated a list of high impact projects and began with an ambitious vision of developing a patient and family centered website. The site had the dual purpose of building community and answering non-clinical questions for patients and family members at all stages of their transplant journey. The newly developed content was published in mid-2012 as part of the Stanford Health Care website. A subsequent review of the web data showed the site to have received over 11,000 views in 8 months with viewers staying on each page several minutes. The time spent on each page indicates that viewers are actually reading the content made available to them.

The PFAC also wanted to take concrete steps to revive the sense of community among transplant recipients, family members, and hospital staff. This effort culminated in the 2012 heart transplant community reunion, which drew over 300 attendees. The response was so positive that the PFAC decided to reprise the event in 2013 with the understanding that it would be an annual event. In response to 2012 attendees' feedback, the 2013 event also included a mini symposium where current topics in heart transplant research were presented in lay language. The showcasing of some of Stanford's leading edge research inspired patients and family members and helped them see beyond their experience to the future of the larger transplant community. We also added a video of thanks from patients celebrating the living of their everyday lives. And, as was done the year prior, we invited a patient speaker to tell her story and concluded the program with a formal recognition of all recipients from prior years, starting from the immediate past year and going back over 25 years. Recognizing our 25+ year recipients ended the evening on an inspirational note for patients, family members, and staff.

At the time of the PFAC's formation, members had been serving informally as Peer-2-Peer (P2P) contacts for people in various stages of the transplant process. With the beginning of a formal hospital sponsored P2P mentoring program, the heart transplant PFAC volunteered to be the first class for the newly developed P2P training program. In 2013 two more transplant patients joined the council, and all eight patient and family members are now active P2P mentors.

In 2013 the Heart Transplant Quality Council established a seat for a patient to become a member of the council. The position is currently filled with one of the PAFC's founding members, and the attendees of this bi-monthly meeting have accepted the patient participant as a valued member of the team. When issues come up where a patient perspective would be of value, members of the council have come to desire the patients' perspective and come to rely on it to better the program.

As the PFAC begins its fourth year, there is a sense of accomplishment and enthusiasm for what lies ahead. The PFAC is currently writing our two year plan and recruiting members. Our 2015 projects include a focus on raising donor awareness and enhancing understanding and access to complementary and alternative medicine (CAM).

In addition, a new hospital designed explicitly to address the concerns of patients and their families, will open in 2018. The PFAC has had a voice in the planning and will continue to be involved. This is an example of the PFAC adding value beyond the transplant program to the entire health care enterprise at Stanford. It is rewarding to have a seat at the table and to have our voices be heard after three short years of growth. In partnership with the health care team at Stanford, we feel confident our contribution is bettering the program for all. ■

Disclosure Statement: The authors have no conflicts of interest to disclose


Jones A, and Dutton K. Patients and families as partners in safety, quality, and experiences of care," Patient Experience Journal 2014, 1:48-49.

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