Use of Hospital Patient and Family Advisory Councils: A Scoping Study

Patient-Centered Background

In 2001, the Institute of Medicine (IOM), a nongovernmental organization now known as the National Academy of Medicine, published Crossing the Quality Chasm, which called for a fundamental change in healthcare to close the gap in quality. The IOM identified 6 healthcare goals to improve quality—safe, timely, effective, efficient, equitable, and patient-centered, known as STEEEP. The patient-centered domain was defined as “Providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”^{( 1 , p.1)} As technology and laboratory tests improved in the late 1800s and early 1900s, physicians’ diagnoses migrated away from the bedside. Frequently, the diagnoses was without patients’ knowledge or involvedment in their medical care, ² prompting the IOM to recommend changes to enhance patient-centeredness.

Patient and Family Advisory Councils’ History

One of the first hospitals to establish a Patient and Family Advisory Council (PFAC) was Boston Children's Hospital in 1982. ³ Patient and Family Advisory Councils typically consist of up to 25 patients and family members who have utilized the hospital's services and who engage in serving as a consumer research group for the hospital. ⁴ Over the decades, PFACs have evolved. Initially, the conversation was one way, with PFAC members criticizing the hospital. However, when institutions recognized that they had built-in focus groups, they began 2-way conversations, bringing initiatives and new programs to the PFAC, often for their stamp of approval or feedback. More recently, health systems have realized that the important patient perspective should have a voice in initiatives from inception and have adopted codesigning techniques. ⁵

The mandated Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) patient experience survey and resultant star ratings, which affect Medicare reimbursements, motivated hospitals to listen to patients’ perspectives to improve patient experience scores and increase reimbursements. Hospital Consumer Assessment of Healthcare Providers and Systems began in 2006 when the Centers for Medicare and Medicaid Services (CMS) and the Agency for Healthcare Research and Quality (AHRQ) created a survey designed to help consumers compare hospitals. Participation in HCAHPS has been mandatory since 2012. ⁶

Despite the influence of HCAHPS, only Massachusetts has mandated a PFAC in every hospital. The State's advocates’ 15-year journey culminated in October 2010 with the requirement that all Massachusetts hospitals host a PFAC. The law requires hospitals to prepare an annual report that is available to the public, describing the hospitals’ accomplishments during the previous year. ⁷ In reviewing the mandatory hospital reports, one author found that they contained process measures, as opposed to outcome measures, which reflect the impact and are the gold standard according to AHRQ. ⁸ Examples of process measures from the published reports included participating in PFAC meetings and interacting with other PFAC members. One hospital report acknowledged the importance of metrics and pointed out that more outcome measurements are needed. ⁹

The prevalence of PFACs has been tracked by the American Hospital Association (AHA) since 2018. The AHA's annual survey of approximately 6100 US hospitals has included the question, “Does your hospital have an established PFAC that meets regularly to actively engage the perspectives of patients and families?” Despite the fact that PFACs have been around for over 40 years, ³ only 54% of hospitals that responded to the 2023 survey had a PFAC, down from 55% in 2019 before the pandemic ¹⁰ when certain hospitals suspended PFACs. Some health systems have embedded PFACs across many hospital areas, such as cancer, emergency department, equity, neurosurgery, obstetrics, pediatrics, psychiatry, sepsis, technology, and transplant, which some institutions list on their websites.

Patient and Family Advisory Council Endorsement

Patient and Family Advisory Councils have been endorsed by many US organizations since the IOM's 2001 report. Nonprofits, such as the Institute for Patient- and Family-Centered Care, which offers a plethora of educational material and resources to launch and sustain a PFAC; the National Partnership for Women and Families; and the Patient-Centered Primary Care Collaborative support PFACs. ¹¹ In 2012, the National Committee for Quality Assurance, which created guidelines for patient-centered medical homes, recommended that they have patient advisory councils. ¹² Federally Qualified Health Centers, which provide primary care and other services to underserved communities and patients, are required to have governing boards comprised of at least 51% of individuals who are served by the health center. ¹³ The Centers for Medicare and Medicaid Services, which created the Comprehensive Care Plus program, the medical home model, states that entities that receive CMS funds must have a PFAC. ¹⁴ The AHA supports PFACs and gathered a group of leaders to produce the Patient and Family Advisory Councils Blueprint: A Start-up Map and Strategy Guide in 2022. ¹⁵ AHRQ provides resources and tools for forming a PFAC. The Joint Commission, which certifies and accredits hospitals and other organizations and which has its own PFAC, provides PFAC resources.

These resources and endorsements from leading organizations and agencies, coupled with the 40-year history of PFACs, offer validation of their importance. Despite the increase in the number of articles about PFACs including literature reviews, this scoping study aims to uncover the unique focus of how hospitals worldwide use PFACs, the Council types, engagement level, metrics, and factors, which article authors and their interviewees describe as contributing to the PFACs’ success. To our knowledge, no literature review has examined these specific data in hospital PFACs.

Non-US Articles

While the majority of articles were about PFACs in US hospitals, articles about other countries’ PFACs shed light on the history and governmental influence on PFACs worldwide. Thirty-six articles were about PFACs in other countries, with Canada having 16; the UK 6; Netherlands 4; Australia, Denmark, Germany, and Saudia Arabia with 2 articles; and New Zealand and Sweden with 1 article each. Five articles about systematic reviews included many countries. Australia developed advisory committees to improve patient satisfaction. ¹⁷ In England and Wales, patients are considered important in improving health quality. ¹⁸ Patient and Family Advisory Councils are commonplace in Canada at the practice, system, regional, and provincial levels. ¹⁹ In the Netherlands, healthcare organizations must have a patient advisory council, ²⁰ and hospitals in Sweden oftentimes have PFACs. ²¹

Types of Journals

The final 143 articles were published in 113 different journals, with the highest number of 15% appearing in nursing-related publications, indicating that nurses are often involved with PFACs. Pediatric and youth councils appeared in 14% of pediatric publications, which is notable since the first known PFAC in the US was at a children's hospital, ³ and 73% of childen's hospitals that responded to the AHA annual survey question in 2023, had PFACs. ¹⁰ Articles appeared in a wide range of journals, including general publications, such as the Journal of Patient Experience and Critical Care Medicine, and in condition-specific publications, such as Bipolar Disorders, Cancer, Journal of Cystic Fibrosis, and Pediatric Blood and Cancer.

Patient and Family Advisory Council Focus

Although not all PFACs had a focus, 70% of the articles indicated they did. For example, in 42% of the articles, the PFAC dealt with a specific condition, such as cancer. The type of person, such as youth, was the focus in 35% of PFACs, and in 16% of PFACs, the focus was both, for example, pediatric cancer.

Level of Engagement

The level of engagement variables in the data capture included the following: Stamp of approval, which was where the PFAC was asked for approval on an already completed initiative; feedback, where the department listened to the PFAC provide input on a project in progress; and codesign, where the PFAC was involved at the inception of the project. Only 3% of articles highlighted that the hospital asked the PFAC for a project stamp of approval. However, PFACs were often asked for feedback when hospital departments presented initiatives. Where noted, 68% of articles with PFAC projects provided feedback. Less common in 29% of articles were PFACs used in codesigning projects, where members were involved from the beginning of the project rather than just offering advice and feedback. Figure 3 displays the number of articles with the type of engagement when mentioned, by decade.

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Figure 3.

Articles with type of engagement by decades.

Metrics and Outcomes

Seven of the 143 articles in this scoping study included measured results with acknowledged outcomes after PFAC involvement, although attribution is difficult when council members are part of a team. In Saudi Arabia, Almohaisen and colleagues ²² outlined several projects with PFAC input, plus other interventions, resulting in improvements gauged by before and after measurements. Hospital Consumer Assessment of Healthcare Providers and Systems patient satisfaction survey scores improved in the physician communication domain between 2018 and 2019 when the hospital assembled a quality improvement team, including council members. ²³ Pain management scores on the HCAHPS survey, before they were eliminated, increased when one hospital formed and engaged a PFAC for 12 months that helped design a program to improve the scores. ²⁴ The value score of a welcome letter increased from 3.79 to 4.63 out of 5 after input from physicians and the PFAC. ²⁵ Falls decreased from 3.03 per 1000 to 2.18 per 1000 with PFAC partnership. ²⁶ Sepsis mortality index decreased after a collaborative, including a Council member, devised a comprehensive program. ²⁷ Wait times for radiology appointments dropped from 30 min to 10 min on average when a workgroup with a patient who had voiced displeasure about the wait times joined the team. ²⁸ Of those articles, only 2 measured the impact of safety on patients. The lack of measured projects prompted Oldfield and colleagues ²⁹ to lament the dearth of PFAC metrics.

Success Factors

Twelve of the 143 articles discussed functions of PFACs that authors attributed to a successful PFAC. One of the ways that PFACs were operationalized was through training, which included training patients and families, as well as staff. Training was the most mentioned function in the articles, followed by leadership and recruitment noted in Figure 4.

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Figure 4.

Functions of successful Patient and Family Advisory Councils (PFACs) as defined by authors.^{4, 24, 26, 28, 30–37}