ADVERTISEMENT
Patients and Their Families: Important Voices in Health Care Practices
I met Vicki Stearn professionally through our mutual involvement in the Alliance of Wound Care Stakeholders and in a chance conversation, she mentioned her work with the Johns Hopkins Patient and Family Advisory Councils (PFACs). I had personally had a horrible experience with the in-hospital care of my husband (a year before COVID). I was anguished about numerous, similar reports by patients and their families about negative experiences while hospitalized at some of the finest institutions in the land. I felt helpless both personally and professionally at the “David vs. Goliath” battle to make even small improvements in the patient experience of care. When Vicki mentioned the PFAC concept, I sat up in my chair. I am grateful to Vicki for introducing us to the concept of PFACs and I hope that it will be the beginning of a dialogue about how it might be leveraged to improve the care of patients with chronic wounds and ulcers.
—Caroline E. Fife, MD, FAAFP, CWS, FUHM
Open, collaborative communication between patients (and their families) and health care providers is critical to patient safety, lowering hospital readmissions, and positive outcomes in general. Across the United States, hospitals—and increasingly, ambulatory care facilities—are engaging with patients and their families through Patient and Family Advisory Councils (PFACs).
PFACs are guided by the core concepts of patient- and family-centered care:
• Demonstrating dignity and respect for patients and families;
• Providing information sharing with patients and families;
• Inviting patient and family participation in care and decision making; and,
• Facilitating collaboration with patients and family members (PFAs) to develop, implement, and evaluate policies and programs.
Although they vary from state to state and institution to institution, effective PFACs are made up of an equal number of PFAs and staff, including administrators, doctors, nurses and others. Councils meet regularly, are co-led by a volunteer PFA and a staff member, and are supported by the organization’s senior leadership.
In addition to bringing the patient perspective generally, PFAs can contribute to a wide variety of activities and decision-making, including:
• Instituting bedside shift reporting, multidisciplinary rounds, the option of 24/7 presence at the bedside for family members (before COVID-19), and patient quiet time,
• Family members participating in problem-solving from individual units to the whole system
• Editing patient education materials and the system’s electronic health record’s patient interface,
• Wayfinding and signage,
• Interviewing candidates for senior positions,
• Offering advice on new projects, and more.
Their goal is to provide guidance that will enhance the patient and family experience and improve the quality and safety of care.
Patients and Families Advise Hospital System Leadership
For the past four years, I have been the volunteer patient co-lead of Johns Hopkins Medicine’s (JHM) system-wide Patient- and Family-Centered Care Clinical Community (PFCC-CC), which is made up of staff and patient and family advisors from JHM’s hospitals, homecare group and community physicians. In this role, I am also an active member of Hopkins’ Board of Trustees’ Patient Safety and Quality Committee, where I speak on behalf of patients and families. I welcome this opportunity to share our endeavors with wound clinics.
In addition to our outreach to Hopkins’ leadership, clinical leaders regularly ask for time on our agendas to present their new projects and receive patient and family feedback. In addition, they often ask that a PFA join their development committees. Programs are tweaked and improved based on our input. We alert leadership to challenges we see to patient and family experiences.
JHM has more than 20 PFACs. Each hospital has one and some specialties at the larger facilities have their own. Other PFACs represent departments, such as
• Emergency
• Oncology
• Pediatrics
• Memory center
• Psychiatry unit
• Neuroscience center
There is a PFAC of teens and children and another for the Spanish speaking population. Since one of a PFAC’s goals is to gather information from the on-the-ground experiences of diverse individuals to help improve care and outcomes for all patients, JHM PFACs also support Patient Cafés, which are similar to focus groups. Recent patients or family members are invited to a small gathering with JHM’s patient experience staff to discuss issues that directly affect their hospital experience. Cafés can focus on the general patient population or be targeted to specific groups: the Black community, hearing impaired persons, the LGBTQ+ community, non-English speakers and others.
Suburban Hospital
On the local level, PFAs sit on committees throughout the hospitals. In addition to my system-wide role, I am a PFA for one of Hopkin’s community hospitals, Suburban Hospital, in Montgomery County, Maryland, outside Washington, D.C.
The Suburban PFAC is made up of approximately 35 volunteer patient/family advisors as well as the chief nursing officer, director of patient and family experience, VP of operations, medical director, the director of the pharmacy, and other staff members. The president attends most meetings, which have continued virtually through the pandemic. We discuss the most pressing issues facing the hospital as well as day-to-day workflow practices, bringing the patient’s unique perspective.
PFAC patient and family members have had a wide range of experiences with the hospital and in their lives. We strive for diversity to represent the communities in the hospital’s catchment area. PFAs are recruited in a variety of ways: doctors, nurses and staff recommend some members, others hear about the opportunity to join a PFAC through word-of-mouth, after reading about PFACs in Johns Hopkins newsletters, or from its website and electronic health records (EHR).
At Suburban, volunteer PFAs sit on and speak up at dozens of hospital committees: patient safety, the falls prevention team, discharge planning, the medication error reduction improvement team, and the general surgery/trauma unit council, to name a few.
In March 2020, Suburban opened a new 108-bed wing, which houses the PFAC-developed and staffed Patient and Family Resource Center. Here patients and families can use computers to access recommended websites, education videos and materials relevant to their medical conditions. The PFAC is so ingrained in Suburban culture that, when the American Nurses Credentialing Center (ANCC) awarded Suburban with its highest honor, a Magnet designation, it cited the hospital’s PFAC as an “exemplar.”
Continuing Through COVID-19
During the COVID-19 public health emergency, the PFCC-CC is playing a leading role in initiating processes for opening hospitals to care partners and keeping them there. We’ve met with Johns Hopkins senior leadership to elevate the need of having family care partners at the bedside, even during a public health emergency, as vitally important to health outcomes, falls prevention, and much more.
PFACs Are Becoming the Norm
PFACs are, increasingly, a normal part of hospital processes. Over the years, I’ve met staff and PFAs from health care systems in both the United States and Canada. In Massachusetts, PFACs are required by law. They are also a useful tool in tackling public health crises. For example, Maryland has just fielded a PFAC to focus on diabetes in the state.
At Johns Hopkins, I’ve received positive feedback from administrative and clinical staff, who credit PFAs with spotting potential problems, solving issues that staff was challenged by and greatly improving communications tools.
Giving Patients the Best Care Possible
Remembering that patients and their care partners are vital members of their care teams and elevating their voices can have a profound impact on health care outcomes.
We see a practice’s workflow as no member of the staff can see it. Communications that make sense to a health care professional may be incomprehensible to the layperson. Communications that make sense to one ethnic group may have an entirely different meaning for another. Communications that make sense to upper middle-class folks may be incoherent to those with different levels of education or who are neurodiverse. Language that is common to a straight, cisgender world may be offensive to members of the LGBTQ+ community. And, for everyone, the ability to comprehend information is made more difficult by a clinical setting.
Having a strong, diverse PFAC can help bridge these gaps to ensure that patients and families get the best care possible.
Vicki Stearn, a communications consultant, is the Patient Co-Lead of Johns Hopkins Medicine’s Patient and Family Clinical Community, and member of Suburban Hospital’s Patient and Family Advisory Council, in Bethesda, Maryland. This article reflects her personal experiences and draws on language and theories developed by the Institute for Patient and Family Centered Care (IPFCC).
Click here to download a PDF of this article.
Resources to learn more about patient and family advisory councils:
Agency for Healthcare Research and Quality
Institute for Patient and Family Centered Care
Planetree (person-center care)
Suburban Hospital PFAC Annual Report
Reimbursement Library From A to Z
Subscribe and never miss an article!
