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Asking for Input: How Patient and Family Advisory Councils Improve Care

Anita McGinn-Natali, co-chair of HUP’s Patient and Family Advisory Council, takes part in a class for nursing leadership at HUP.

Five oncology nurses at the Hospital of the University of Pennsylvania (HUP) – most with less than a year of experience under their belts – listened closely as a panel of former patients and family members of patients told stories of their personal experiences on a cancer unit at HUP. And they answered tough questions the nurses raised. “What do patients want me to say when the news is bad?” Or “What should I say when a patient asks ‘am I going to die?’”

“These are scary questions, especially for new nurses,” said Karen Anderson, MSN, clinical nurse specialist.

The panelists are all members of HUP’s Patient and Family Advisory Council (PFAC) and they’re sharing their stories to help these nurses develop relationship skills that will last throughout their careers. But this is only one of the many ways council members help improve the patient experience.

When HUP created its PFAC in 2010, the concept was relatively unknown. In fact, it was the first in the city to focus on adult care. That first year, the group completed just five projects, including improving a process that ensured that patients’ personal items (such as hearing aids or eyeglasses) followed them if they moved to a different unit. As the emphasis on patient-centered care continued to grow, though, so did the requests from staff. In the last three years alone, council members worked on 92 projects, and many more requests pour in every month.

One such project focused on a brochure about clostridium difficile (C. diff), a highly contagious infection that spreads easily and is often invisible to healthy people who have it. The focus was supposed to be on the importance of good hand hygiene, but with a photo of the bacteria on the cover and inside copy that was too clinical, council members told them, “Washing hands isn’t any part of it.” More feedback – from both the council and HUP’s patient education specialists – resulted in a new brochure with a drawing of hand washing on the front and understandable content inside, both making the message clear.

Higher-level, hospital-wide initiatives also benefit from PFAC input. During shift changes, nurses going off shift provide important information about patients to those coming on. For years, it was done at the main nursing station but, as hospital culture became more patient-centered, a national effort urged hospitals to switch the location to the bedside. Several advisors participated in the effort. “We learned that one of the scariest times for patients was when nurses changed shift,” Anderson said. One advisor worried, “What if the new nurse who I trusted to take care of me wasn’t as wonderful as the first?’”

Janet Dennis and Bob Goodman, shown here at the Transplant Games in Salt Lake City, are active members of the PFAC.

Another participant, a patient who spent weeks in HUP’s trauma unit, said that having this report at her bedside significantly reduced her anxiety that information was being kept from her. “She said everything was now transparent,” Anderson said. As part of their involvement, the advisors also helped create nursing educational materials, including a video about the impact of the shift change on patients, and they shared their experiences on multiple units. HUP’s patient-centered nurse report is now standard practice at every shift change on patient-care units.

HUP’s advisory council not only includes patients and family members, but also hospital staff and leadership. A successful council requires the right balance between staff and other volunteers so recruiting the right individuals is key. “Volunteers need to be good story tellers, astute observers and optimistic that their partnership with the hospital staff will make things even better,” Anderson said.

Janet Dennis and Bob Goodman, who both underwent heart transplants at HUP, checked all the boxes. Since becoming involved in the PFAC, they’ve shared their experiences – both good and not so good – with many staff members. For example, Goodman has told the story about being wrapped in warm blankets in the OR because it was so cold and he was unable to move his hands. “But there was always someone standing there with me, like virtually holding my hand while I was waiting to go under.” Similarly, Dennis recalled having trouble falling asleep in the hospital because she couldn’t sleep on her stomach. A nurse brought in pillows and repositioned Dennis on her side. “It was the best sleep I’ve ever had in a hospital.”

Sometimes the ideas come from the advisors themselves. Goodman helped redesign the hospital’s patient bills, to make them “clearer and more understandable.” He is now collaborating with other PFAC members to study the issue of boredom for patients who must remain in the hospital for an extended period of time, such as pre-transplant patients, but who are not so sick that they need to stay in bed. Anderson said patients staying in a hospital for weeks and months “can become depressed, less motivated. Having diversional activities, reliable structure and human connection can go a long way in supporting a patient’s mental health and ability to cope.”

HUP’s Patient and Family Advisory Council is rated as “high-performing,” – the top category – and is only one of many throughout Penn Medicine. Indeed, PFAC’s are becoming more common throughout the country and for good reason. According to a study by the New York State Health Foundation, “hospitals with high-performing PFACs had lower rates of pressure ulcers, sepsis and septic shock, and 30-day hospital-wide readmissions” than hospitals with lower-performing PFACs or none at all.

Oncology nurse educator Christin Reddy, MSN, said that feedback to the oncology panel discussion for new-to-practice nurses has been so positive that she’s hoping to expand it to nurses with more experience. “Many did not realize the impact of small things in patient care, such as closing the door and taking a minute to sit next to the patient and talk. These are acts that patients and family members carry with them and remember for years to come,” she said. “I can’t say enough about our Patient and Family Advisory Council. It’s amazing what they’re willing to give back.”


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