Patients and Families as Partners

Sandy Clancy

Sandy 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

The 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

Nancy 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.

Harry Haisten

Harry Haisten’s wife Sandra was diagnosed with Alzheimer’s in 2014 and was one of the first patients of the Integrated Memory Care Clinic. Harry and Sandra still live in their condo in Atlanta although they have help several days a week. After his own quadruple bypass surgery in the spring of 2015, Harry joined the IMCC’s PFAC in mid-2016 and continues to serve as a member.

“I was trying to be connected to Emory in every way I could—to get the best care for Sandra. I wanted to be part of her care and to be involved. The PFAC provided that opportunity.” From childhood, Harry was exposed to service and caring. He grew up in a in a small town in Georgia where his family owned the funeral home and the ambulance.

Although he spent most of his professional life at Merrill Lynch, Harry has a degree in journalism from the University of Georgia and did some work in advertising. With that background, Harry feels that, as a PFAC member, he can best contribute in marketing and writing:

• Spreading the word about the importance of the IMCC
  “By combining both medical and neurological care, the IMCC has simplified our lives. The team is a group of people who are compassionate and understanding; that makes our relationships with them so solid.”
• Making materials relevant and useful to other families by addressing what they would want to know, by bringing “lay background” into a complicated and, often, confusing system

Harry is “astounded” to see how strong the PFAC/PFA system is at Emory Healthcare and across the country.

Kelly Ranallo

Since her daughter Allie was diagnosed with Turner Syndrome (TS) in 2006, Kelly Ranallo has collaborated with providers at Children’s Mercy to ensure that girls with TS and their families receive coordinated care. After joining the hospital’s Family Advisory Board in 2008, Kelly championed a discussion to create a better model of care for girls and families diagnosed with TS. Two years later, the Turner Syndrome specialty clinic was launched. It was later re-named the Great HeighTS clinic to highlight the goal of helping girls and families reach their “greatest heights” across all aspects of life.

In 2014, Kelly founded the Turner Syndrome Global Alliance (TSGA) with two other parent advocates. TSGA’s mission is to connect Science, Research and Funding to the TS community. The organization pioneered the pediatric KidNECT designation criteria ensuring that all TS programs would include four essential components: Networking, Education, Coordinated Care, and Transition. Since its inception, TSGA has supported the development of a national network including 35 pediatric designated TS programs.

Allie is now 21 and attends the University of Nebraska but Kelly continues her advocacy work. She has recently partnered with the University of Kansas to launch the first comprehensive adult TS program. Similar in nature to the pediatric model, the program offers care through Family Medicine. The goal is to create a network of adult TS specialty clinics, leading to coordinated care, better health outcomes, and innovative research initiatives.