Building trust
It's early July, and the Adult Patient and Family Advisory Council has gathered for its monthly meeting. Members take turns reporting on their committee activities, then the group reviews results from the Institute's ongoing patient-satisfaction survey. That sparks a brief brainstorming session about ways to shorten patient waiting times — a topic this contingent has devoted considerable energy to in recent years.
"Wait time was the number-one issue here three years ago, and it's still the number-one issue," comments Joe Nies, a survivor of non-Hodgkin's lymphoma treated at DFCI.
Seeking feedback on the quality of care in the Jimmy Fund Clinic, Gary Jernegan (right), chats with Ann Petrucci (left) and daughters Nicole, 2, and Taylor, 3.
Nies was a founding member of the council, formed in late 1997 as an outgrowth of the consolidation of adult cancer services at Dana-Farber and Brigham and Women's Hospital (BWH) and the transfer of the Institute's inpatient beds to BWH. Some patients were upset and worried about the pending move, and open meetings led to a working group that eventually formalized into the council.
Although Patient and Family Advisory Councils (PFACs) were first introduced at children's hospitals and units in the 1980s, they are rare among adult oncology programs, according to industry experts. The success of Dana-Farber's pioneering adult council led to the creation of its pediatric counterpart in 1999 to enhance care in the Jimmy Fund Clinic and the oncology units at Children's Hospital Boston.
The councils, which each comprise up to 15 patients and family members and several staff, partly owe their existence to two devastating medication errors at Dana-Farber in 1994. Although DFCI had always prided itself on its relationship with patients and families, the tragedies prompted "a profoundly new level of awareness about the unique insights that patients and families can bring to organizational decision making," Reid Ponte notes.
Over the past five years, the councils have made their mark throughout the Institute — and even discussed their role during a national teleconference moderated by then-Vice President Al Gore in 1998. Members today take part in high-level meetings, serve on search committees, help orient new employees, teach customer-service skills, identify safety concerns, and provide patients' perspectives on policies, programs, and construction projects. They are entrusted with confidential information and even spoke with surveyors during Dana-Farber's recent accreditation site visit.
"We have found the advisory council to be very helpful to our department," offers Jay Harris, MD, DFCI chair of Radiation Oncology. "Members were actively involved in designing renovations to our treatment planning and simulation areas at Brigham and Women's, and they'll continue during the next phase. They are strong advocates for the needs of patients and families and can articulate points of view that might sound self-serving coming from staff."
In her former capacity at DFCI as director of Patient and Family Support Services, Cynthia Medeiros, LICSW, worked with patients and administrative staff to establish the adult council. "The impact of these councils has been extraordinary," she reflects. "Involving patients and families has fundamentally changed the way that business is done here. Theirs is a powerful voice, and the model works because of the mutual respect that has developed among patients, family members, and staff." Adds council Co-Chair Martie Carnie, "At first people at the Institute weren't excited to see us; now there's a true partnership."
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