Patient-led advisory councils tackling bigger matters

Before a nurse hands off a patient to an incoming nurse at any of LifePoint Health's 72 hospitals, the two have an in-depth conversation with the patient and family members at the bedside.

The systemwide protocol is an opportunity for inpatients to ask questions about their care and to ensure they are up to speed on their current health status. The incoming nurse is also made aware of the patient's unique circumstances and needs during the interaction. "It promotes patient engagement in a way that could never be achieved before," said Dr. Rusty Holman, LifePoint's chief medical officer.

But the idea for the protocol came from an unconventional source: a former patient. He sits on the hospital chain's corporate-level Patient and Family Advisory Board and shared his positive experience when nurses spoke with him before a shift change during a recent stay. "Rusty ran with it," said Laura Evans, a co-chair of the advisory board and a former LifePoint patient.

Evans and five other former LifePoint patients meet three times a year to discuss a range of issues across the system from quality initiatives like a recent hand-washing campaign and even larger concerns such as physician burnout. This is in addition to the many hospital-level advisory boards that meet monthly across the system.

Holman said the patient perspective is vital to improve care because patients can offer insights that probably wouldn't occur to clinical staff. "In the past, the healthcare industry has made certain assumptions about what patients and families want," he said. "It was important to us to have their voices in the room when we are making decisions so we know what quality of care actually means to them."

LifePoint is one of a growing number of hospitals and health systems that have leveraged the unique knowledge and opinions of their former patients to improve the patient experience and quality of care. As more providers recognize the benefits of a patient-centered culture, they have set up patient and family advisory councils—also known as PFACs—that promote an organized structure for patients' ideas and opinions to be heard and acted on.

Some hospitals have only one PFAC, while others have created several, with separate ones devoted to different care areas or departments.

But merely setting up a patient and family advisory council isn't enough to see changes, experts say. The councils require appropriate investment to maintain buy-in from leadership and physicians, which can sometimes be a challenge. "If you want to do this, there are things you need to do right," said Dr. Tejal Gandhi, chief clinical and safety officer at the Institute for Healthcare Improvement.

Support from the C-suite and physicians is essential to ensure the patient and family advisory council is successful, she said, but that's not always easy.

At Valley Hospital in Ridgewood, N.J., it took some time for doctors to see the value of the patient and family advisory council after it launched in 2012, said Pam Bell, director of patient- and family-centered care at the hospital. Physicians made comments like "what do they know?" Bell said.

To break down the hostility, the hospital educated them and other clinicians on the importance of patient-centered care and how it can improve clinical quality overall. The effort has paid off. Physicians have embraced the concept and come to the PFAC meetings with initiatives to get patient and family input, Bell said. Valley Hospital now has eight PFACs since the first council launched in 2012.

Buy-in from staff is only part of it, however. The organization must also make the necessary investments to create an effective council structure that can create change, said Marie Abraham, vice president of programming and publications at the Institute for Patient- and Family-Centered Care.

Having a staff member dedicated to overseeing a patient and family advisory council is essential. Patient and family advisory councils should reflect the community the hospital or system serves so diverse opinions are brought forward, Abraham said.

The councils should include both patients and clinical staff or leadership, and patients should not be outnumbered. Proper balance will make it more likely that conversations are relevant to the issues at the organization and their ideas can be implemented, Abraham said. "Bringing in the clinical staff ensures PFACs are a real collaboration," she added.

MedStar Health's 12-member corporate PFAC is evenly split between clinical staff and patients and families. Hospital leadership is present at the meetings as well.

The structure has allowed the advisory council to make a meaningful impact at the organization, said Dr. David Mayer, MedStar's vice president of quality and safety. Clinical staff share concerns, but patients and families have the authority to decide what they want to address.

For example, the patient and family advisory council spearheaded an initiative this year to increase awareness among patients of the symptoms of sepsis. The PFAC created a video that includes firsthand accounts from parents with children who have suffered sepsis. The video then details the symptoms that family members should be looking for if they suspect their loved one might have sepsis.

The video is now played at all MedStar facilities throughout the Baltimore and D.C. area while patients wait to be seen by their doctors.

Indeed, patient and family advisory councils can be an important resource for providers to better communicate with patients on issues like sepsis or other complicated aspects of healthcare, Gandhi at the IHI said. "Health literacy, communication, all of that is important, so there are many different ways patients can get engaged," she said.

The University of California at San Francisco system has used its 13 PFACs to break down communication barriers patients often face. For example, the council for the UCSF Helen Diller Family Comprehensive Cancer Center created a guidebook for all cancer patients. The book, which is over 60 pages, lays out all the different support services offered to cancer patients at UCSF, questions to ask doctors during visits, definitions of complicated cancer terms, and other supportive services.

The inspiration for the guidebook came from a patient and family advisory council member who expressed how daunting it can be to understand and retain all the information that comes with a cancer diagnosis, said Keren Stronach, patient experience coordinator at the cancer center.

Advisory council members also provided insight into the language and organization of the guidebook so it's easy to understand for patients. "For many patients, the cancer experience is like landing in a new country with new rules and terminology," Stronach said. "They need someone to guide and help point out the different things that are important."

The complexity of issues patient and family advisory councils address often depend on how old the council is, Gandhi said. Organizations go through a growth period when they establish PFACs. Typically, they start with ways to get patient input on cosmetic concerns like the design of a waiting room or new buildings. But over time—and with support from leadership—the advisory council progresses to address issues that involve safety and quality.

"It is an evolution. I think that's where they dip their toe in the water, but it needs to be more than just, 'Help us pick the colors of the waiting room,' " Gandhi said.

Since the first patient and family advisory council at Valley Hospital launched five years ago, the councils have been behind several clinical changes. For example, the PFACs are the reason all patients receive a medication identification card, even in home-care settings. Medication reconciliation is one of healthcare's biggest challenges, Bell said. "If you get (the medications a patient is taking) wrong in the beginning, it's going to be wrong throughout, and it's going to follow that patient through their stay to discharge."

To address the issue, patient and family advisory council members created cards that allow patients to list all the medications they are on. Providers can review the card when they examine patients or before they prescribe a new drug.

Another well-established council still has trouble in one area. The Family Advisory Council at UCSF's Benioff Children's Hospital was first established in 2006. Even after 11 years, Becky Higbee, coordinator of the council, still struggles to get a diverse array of members. She said low-income parents often don't have the time or means to travel to the hospital for meetings. It's also hard to attract parents who don't speak English. "That is my greatest challenge," she said.

But the Dana-Farber Cancer Institute in Boston, one of the first organizations to establish a PFAC, roughly 20 years ago, has seen its council mature and develop. The council now addresses in-depth quality and safety issues not typically seen in newer patient and family advisory councils, said Renee Siegel, program manager of the council.

Patient and family advisory council members at Dana Farber are part of high-level decisionmaking at the organization. One member sits on the ethics committee while another participates in the center's quality improvement and risk management board. High-level, confidential issues are discussed in relation to safety and quality. The members also were part of the interview and selection process of its new CEO.

"How much trust is given to them to handle sensitive, confidential information?" Siegel said. "It empowers them that their voice and perspective are really necessary."