BRIDGING GAPS: MGHfC council members Cimino, left, and Sandy Clancy
“It can feel so overwhelming at times and you feel so alone. It’s a comfort to know someone has been through it and has a voice,” says Lisa Cimino, member of the MassGeneral Hospital for Children (MGHfC) Family Advisory Council.
For more than a decade, the MGH Patient and Family Advisory Councils (PFACs) have provided communication vehicles for patients and families to share their experiences. The councils – made up of caregivers, administrative staff, former patients and family members – meet monthly with the goal of shaping and enhancing delivery of care.
There are four PFACs at the hospital: MGHfC; MGH Cancer Center; Institute for Heart, Vascular and Stroke Care; and the General Council. In addition, the hospital’s Ambulatory Practice of the Future operates a Care Alliance, which facilitates an ongoing partnership among patients and staff to promote innovation and the optimization of care. Each PFAC addresses a distinct patient population, providing a different perspective to influence initiatives throughout the hospital. Most members are referred by clinicians but some seek out the council on their own.
The first PFAC was formed in 1999 with the launch of the MGHfC council. “I felt if there was a way I could help the hospital make this the best experience possible for families, I wanted to be a part of that,” says Cimino. When her daughter underwent a kidney transplant, it was an emotional experience – numerous checkups, appointments and tests marked by a procedure with unpredictable outcomes. “The council is a place where I can share what I went through and my concerns that are then carried on and applied to improve care in the future,” says Cimino.
The MGHfC council is comprised of a child life specialist, a social worker, a nurse, a resident, attending doctors and 13 family members, including Sarah Grallert who serves as a voice for outpatients. Grallert’s experience was different than that of other parents on the council because her children were only seen in an outpatient setting. “So what’s my place? What’s my role? What I’ve found is that there’s a lot of room to bridge distances between the provider and family in the outpatient room.”
One of Grallert’s most gratifying experiences has been working with staff as part of the Ambulatory Care rotation. “We talk to the pediatric residents about what goes on in a parent’s mind, what worries us and how scary it can be.”
Lynne Morin, a childhood cancer survivor, also knows how scary the hospital can be. She was only 15 years old when she received treatment at the MGH for bone cancer. Twenty-five years later, Morin is a member of the Cancer Center PFAC. “I wanted to give back to the MGH but I also wanted to give back in a way that would make things better for the patients and families that followed.”
Morin has been a member of the council since its inception in 2001. The center’s PFAC has influenced some major milestones over the years construction of the Cancer Center’s facilities in the Yawkey Building, the rooftop Healing Garden and MGH West.
“I’m getting so much out of it, I don’t want to leave,” says Margaret Carvan, another Cancer Center PFAC member. “The teams are valuable because everybody’s journey and perspective is different.”
David Wooster, a recipient of two heart transplants at the MGH, says being a member of the Institute for Heart, Vascular and Stroke Care council has enriched his life. “The first thing we worked on back in 2007 was the MGH mission statement. When the final statement was shown to us and there was a phrase from our group, I realized what we did in that room – what we were going to do – would have an impact on the whole institution.”
Formerly know as the Heart Center PFAC, the council expanded in 2012 to include representatives in vascular and stroke. Their work over the years has included everything from reviewing education materials, to room design, to evaluating software.
In addition to the three patient-centered councils, the Ambulatory Practice of the Future – a primary care practice model piloted internally – created a Care Alliance, which addresses the staff experience as well. Rebecca Petersen, one of two patient co-chairs, says, “The staff here is already patient-sensitive, which frees our group to work on other ways to make the practice better.” She and other alliance members have played a major role in developing and providing input about written information for new patients and staff processes as well as reviewing survey results.
Established two years ago, the General Council has a broader focus and serves as an educational resource for all PFACs, explains member Kay Bander. “It is a problem-solving resource and an information absorbing resource.”
The chair of each PFAC also can sit on the General Council. “This provides an opportunity for PFACs to share information and discuss strategies for recruitment, orientation and learning initiatives” says Bander. “Influencing an academic health center as large as the MGH is not a simple task.”
For more information about PFACs or to view the recently released 2012-2013 Annual Report, visit www.massgeneral.org/patientadvisorycouncils.
Read more articles from the 10/11/13 Hotline issue.