Advice from Patient/Family Advisors

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Sandra Clancy

There is enormous power and possibility for transformation in, straightforwardly, sharing one’s experiences and being open to engaging in dialogue with staff and leadership about solutions. The goal – always – is to change systems of care.

Sandy Clancy, MassGeneral, Pediatric Coordinated Care Clinic

Sandy Clancy

Sandra ClancySandy Clancy’s son Jack died in September 2004 of a rare fatal disease. During the 8-9 month period of his illness, Jack spent time in the hospital but also at home. Sandy remembers wishing there had been “one person to call, one physician who was the leader – one quarterback of the team.” Essentially, Sandy coordinated her son’s care and served as the liaison between different specialists. “I sometimes felt that I held all the health information about Jack, while the providers each had pieces.” Sandy also spent hours negotiating with medical supply companies, pharmacists, and insurance companies.

After Jack’s death, Sandy and her husband met with MassGeneral’s Chief of Pediatrics and shared their frustrations about the lack of continuity of care for children with complex medical needs who are outpatients. Sandy talked about the difficulty of being both a mother and a care manager. The Chief of Pediatrics promised Sandy that they would “find a remedy for this problem.” Sandy insisted that she wanted to be part of the remedy – of the change.

With that impetus, MassGeneral not only began developing its Pediatric Coordinated Care Clinic but also hired Sandy to be the Clinic’s first Manager in 2006; she is still in that position. Sandy says that her own experiences as the mother of a child with complex needs have “informed and shaped” her suggestions for designing the Clinic’s services.

Brenda Metzger

If you want change, you have to be part of it – from the inside! The “powers that be” at our health system will really listen but patients and families have to tell them what they need.

Brenda Metzger, MetroHealth System, J. Glen Smith Health Center

Brenda Metzger

Brenda MetzgerThe PCMH Quality Committee at the J. Glen Smith Health Center of MetroHealth System began in 2014. Brenda Metzger is one of its members. Her primary care physician, Joseph DaPrano, MD, whom she has seen since 2002, chairs the Committee and encouraged her to join. Dr. DaPrano is also the Medical Director of the Health Center. When she attended a training program for PFAs, Brenda was also invited to serve as a member of The MetroHealth System Patient and Family Advisory Council.

As a PFA, Brenda has provided input on the after visit summary, billing systems, and community outreach and information programs. Brenda feels strongly that MetroHealth cares about its patients, including those with chronic conditions like high blood pressure and diabetes who need to visit their primary care providers regularly. But lack of public awareness about MetroHealth’s services to the community (e.g., transportation to appointments, sliding scale fees) is a real barrier to care, and the PCMH Quality Committee is actively addressing those issues.

Nancy McElveen

Patient partners represent diverse backgrounds, but everyone has something to offer. Don’t worry that you have no clinical background; it’s your individual experience – as a patient or family caregiver – that informs what you contribute.

Nancy McElveen, UNC Health Care, Internal Medicine Clinic

Nancy McElveen

Nancy McElveenNancy McElveen, PhD, co-chairs the PAC of UNC Health Care Internal Medicine Clinic and is one of the original members. She saw a flyer describing the PAC and inviting patients to apply to the Council at the check out desk in the clinic. Nancy views her participation as “an opportunity to give something back.” Nancy herself has been a patient of the Internal Medicine Clinic and other clinics at UNC since 1992. But her family history with UNC Health Care goes back years, to when her daughter, then 12 years old, was a patient. Nancy says, “We’ve received excellent care for more than 25 years; being a member of the PAC is a way to say ‘thank you.’”

In her time on the PAC, Nancy has seen tangible, continued, improvements in clinic operations, for example, communication about delays in appointment times for patients. Now, white boards in the waiting area inform patients of delays when they arrive – and they are given the choice to wait or to re-schedule.

Subsequent surveys showed “exponential” improvement in patient satisfaction. According to Nancy, “We, collectively, clinic staff and advisors, turned this around!” As a new initiative, advisors and staff round together in the waiting area to get feedback from patients on issues like phone access and cleanliness.