Sage Journals: Discover world-class research

Abstract

With the aim of fostering patient-centered care, Patient and Family Advisory Councils (PFACs) have emerged as a way for hospitals to garner input for initiatives and programs from patients and patients’ families who have used the hospitals’ services. Despite their inception in the early 1980s, only 54% of United States hospitals field a PFAC. This scoping study entailed searching 6 databases in July 2024 and reviewing 143 articles about hospital PFACs from around the world to understand how hospitals use PFACs, measure the results, and acknowledge the success factors. Patient and Family Advisory Council engagement ranged from stamping approval for a project to providing feedback or codesigning the project from the inception, with feedback as the most popular. Of the articles about specific PFACs, 70% either dealt with a condition, such as cancer, the type of person, such as youth, or both. The literature review revealed that few articles cited PFAC project metrics and outcomes, although some articles mentioned PFAC success factors, the most prevalent of which was the training of patients and staff, as well as leadership.

Keywords

Patient and Family Advisory Council PFAC patient-centered patient advisory council

Introduction

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 pandemic¹⁰ 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.

Method

The purpose of this scoping study is to map the literature on the use of PFACs in acute care hospitals around the world. The study examined several questions: (1) How do hospitals use PFACs? (2) Do they measure the results? (3) Do they identify the success factors of PFACs?

The literature search included 5 terms: “Patient and Family Advisory Council,” “PFAC,” “Patient Advisory Council,” “Patient Council,” and “Patient Safety and Quality Council.” Initially, the first 2 terms were searched; however, article reviews revealed the additional terms, such as stakeholder, safety, and qualtity. The scope included those terms in the article title or the abstract. If the term was not in the title or the abstract, then the review found that the term was used tangentially in the body of the article. The searched databases included CINAHL, Cochrane, EMBASE, MEDLINE, PubMed, and SCOPUS. The inclusion criteria included peer-reviewed articles about hospitals written in English from January 1980 through July 2024. Figure 1 maps the literature review, which one person conducted and may be a limitation of the study.

Figure 1.

Literature search results.

Using a customized TIDieR (template for intervention description and replication) checklist,¹⁶ the data charting included the name of the journal and PFAC focus; the year of publication; the objective of the PFAC, and whether it was a hospital-wide council or focused on a specific condition, such as cancer, or a specific type of cohort such as youth; the type of study, such as qualitative or quantitative; the level of engagement of the PFAC, such as giving approval for a project, providing feedback, or codesigning from the inception of the project; the metrics used; the outcomes; and the PFAC success factors noted by the authors. The data were populated in Excel. The major themes of the review were the PFAC focus, level of engagement, metrics, outcomes, and success factors.

Results

Figure 2 reflects the 143 study articles by decade with 70 articles in the first 4.5 years of the 2020 decade.

Figure 2.

Number of articles by decades.

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.

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 colleagues²² 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 colleagues²⁹ 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.

Figure 4.

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

Discussion

This scoping study aimed to uncover how hospitals worldwide use PFACs, the PFAC types, the engagement level of projects, functions attributed to their success, and metrics. The study revealed that 70% of articles focused on the type of condition or person, acknowledging that healthcare professionals may not know the perspective of the cancer patient or the needs of the pediatric patients’ parents, for example. Articles about hospital-wide general PFACs were less common. Hospitals should consider starting a focused PFAC so clinicians better understand the patients’ issues to help improve patient centeredness.

The articles were segmented into 3 types of engagement levels. PFACs with minimal engagement, also known as stamp of approval, are rare. Feedback engagement is the most prevalent, with hospitals seeking advice from PFAC members. Both feedback and codesign of the initiatives brought to the PFAC, usually by departments, are becoming increasingly popular. Figure 3 demonstrates that codesign was evident in 8 articles in the first 4.5 years in the 2020s, but, extrapolated, is on track to be included in approximately 23 future articles.

As a participatory approach, the codesign methodology acknowledges patients’ wisdom in creating solutions to issues that may affect them as end users of hospital services. Moreover, this inclusive and collaborative technique inspires ownership, increasing patients’ acceptance of the solutions. For example, Dukhanin and colleagues³⁸ used codesign to create an initiative to increase patient portal use. Rather than asking the patients for feedback on an already developed program, they collaboratively codesigned the initiative, which saved time and money in redoing a project when the voice of the patient would have been added later in the feedback process. It would behoove PFACs to adopt a codesign type of engagement to save time and money in the future.

Twelve articles mentioned functions, such as training or leadership, which the authors attributed to the PFACs’ success, as defined by them. For example, Halm and colleagues³⁷ highlighted administrative support for the success of starting their PFAC. However, no study has focused on the qualities that make PFAC successful, which may be why the adoption rate hovers around 50% in US acute care hospitals after more than 4 decades. Leaders have no blueprint for the success factors or compelling evidence to start or sustain a PFAC.

Seven projects measured the results with acknowledged outcomes, although attribution is difficult when more than the PFAC is involved in the project. However, none of the other studies used metrics to gauge the initiatives’ success, although potential measurement was plausible in several studies. Researchers have pointed out the paucity of outcome data for PFACs.³⁹ Patient and Family Advisory Councils should consider measuring the outcomes of projects, where possible, to help prove the value of PFACs and ensure future support from leaders.

Limitations

The gap in this scoping review is that no studies focus on the PFACs’ success qualities, which would help leaders understand the PFACs’ mediators. Also, the articles were reviewed by only one person. Non-English articles were excluded from this study, which may have eliminated data. The review did not measure study quality or bias and may not have included all relevant terms.

Conclusion

Hospitals around the world are publicizing their work with PFACs, primarily focusing on specific healthcare conditions and types of patients, as evidenced by the number of articles about PFACs. Hospitals use PFACs predominately for feedback on programs or initiatives and less commonly employ PFACs for codesigning, where PFACs are involved at the inception of the project. Rarely do hospitals measure the results of the PFAC input, and seldom have hospitals detailed the ingredients required for a successful PFAC—factors that might explain why PFACs are in only 54% of US acute care hospitals despite their 40-year duration. Success factors, as well as metrics, could be important research for the future to guide hospitals on qualities that help start and sustain a PFAC.

Footnotes

Acknowledgments

Barbara Lewis would like to acknowledge her sister Joan, whose death in the ICU inspired her to work to improve the patient experience.

Authors’ Note

Barbara Lewis, University of Nevada, Las Vegas; Christopher R. Cochran, University of Nevada, Las Vegas; Erika Marquez, University of Nevada, Las Vegas; Neeraj Bhandari, University of Nevada, Las Vegas; Jennifer Pharr, University of Nevada, Las Vegas; Soumya Upadhyay, University of Nevada, Las Vegas; Stowe Shoemaker, University of Nevada, Las Vegas.

Declaration of Conflicting Interests

The author(s) declared that there were no conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Barbara Lewis

Erika Marquez

Jennifer Pharr

References

Agency for Healthcare Research and Quality. 2022. Six Domains of Healthcare Quality. Available at: https://www.ahrq.gov/talkingquality/measures/six-domains.html (accessed 23 October 2024).

Starr

. The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry. Hachette UK; 2017.

Popper

Anderson

Black

Ericson

Peck

. A case study of the impact of a parent advisory committee on hospital design and policy, Boston children's hospital. Child Environ Q. 1987;4(3):12-7.

Ponte

Conlin

Conway

, et al. Making patient-centered care come alive: achieving full integration of the patient’s perspective. J Nurs Admin. 2003;33:82-90.

Friesen

Herbst

Turner

Speroni

Robinson

. Developing a patient-centered ISHAPED handoff with patient/family and parent advisory councils. J Nurs Care Qual. 2013;28:208-16.

Centers for Medicare and Medicaid Services. n.d. Frequently Asked Questions. Available at: https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/Downloads/HCAHPSF2713.pdf (accessed 23 October 2024).

Wachenheim

. Patient and Family Advisory Councils. Patient Safety & Qualtiy Healthcare; 2015. Available at: https://www.psqh.com/analysis/patient-and-family-advisory-councils/ (accessed 23 October 2024).

Agency for Healthcare Research and Quality (2015) Types of Health Care Quality Measures. Available at: https://www.ahrq.gov/talkingquality/measures/types.html (accessed 23 October 2024).

Dickman

. 2022 Patient & Family Engagement Annual Report. Beth Israel Deaconess Medical Center; 2022, September.

10.

American Hospital Association. American Hospital Association Annual Survey Database. American Hospital Association; 2024.

11.

Johnson

Mroz

Abraham

, et al. Promoting patient and family partnerships in ambulatory care improvement: a narrative review and focus group findings. Adv Ther. 2016;33(9):1417-39. doi: https://doi.org/10.1007/s12325-016-0364-z

12.

National Committee for Quality Assurance. Standards and Guidelines for NCQA’s Patient-Centered Medical Home (PCMH) 2014. National Committee for Quality Assurance; 2015.

13.

California Department of Health Services. n.d. Available at: https://www.dhcs.ca.gov/services/medi-cal/Pages/FQHC_RHC.aspx (Accessed 23 October 2024).

14.

Forward

Sieck

. Patient and family advisory councils (PFAC) feedback as the voice of health care consumers. J Hosp Manage Health Policy. 2022;6

15.

American Hospital Association. Patient and Family Advisory Councils Blueprint: A Start-Up Map and Strategy Guide. American Hospital Association; 2022.

16.

Hoffmann

Glasziou

Boutron

, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687. doi: https://doi.org/10.1136/bmj.g1687

17.

Jones

. Establishment of a community advisory committee at a major teaching hospital. Physician Exec. 1995;21:39-42.

18.

Crawford

Rutter

Manley

Weaver

. Systematic review of involving patients in the planning and development of health care. Clin Gov. 2004;9:65.

19.

Warren

Leamon

Hall

, et al. The role of patient advisory councils in health research: lessons from two provincial councils in Canada. J Patient Exp. 2020;7:898-905.

20.

van der Meide

Olthuis

Leget

. Patient participation in hospital care: how equal is the voice of the client council? Health Care Anal. 2015;23(3):238-52. doi: https://doi.org/10.1007/s10728-014-0271-x

21.

Fredriksson

Modigh

. Patient involvement at the managerial level: the effectiveness of a patient and family advisory council at a regional cancer centre in Sweden. BMC Health Serv Res. 2021;21(1):1-10. doi: https://doi.org/10.1186/s12913-021-06967-x

22.

Almohaisen

Alsayari

Abid

, et al. Improving patient experience by implementing an organisational culture model. Br Med J Open Qual. 2023;12:e002076.

23.

Asuncion

Quintos-Alagheband

Leavens-Maurer

Akerman

Janicke

Cavanaugh

. Utilization of family as faculty: a patient directed simulation education to improve patient and family communication during patient-family centered rounds (PFCR). Pediatr Qual Saf. 2022;7:e551.

24.

Bookout

Staffileno

Budzinsky

. Partnering with a patient and family advisory council to improve patient care experiences with pain management. J Nurs Adm. 2016;46:181-6.

25.

Busl

Alongi

Anderson

Jaffee

Baron-Lee

. Patient-perceived value of a specialty-specific welcome letter: what you say and how you say it. Neurol Clin Pract. 2019;9:228-32.

26.

Cunningham

Walton

. Partnering with patients to improve care: the value of patient and family advisory councils. J Nurs Admin. 2016;46:549-51.

27.

Hatlie

Nahum

Leonard

, et al. Lessons learned from a systems approach to engaging patients and families in patient safety transformation. Jt Comm J Qual Patient Saf. 2020;46:158-66.

28.

Kuhn

Mickelsen

Morimoto

Larson

. The use of patient and family advisory councils to improve patient experience in radiology. Am J Roentgenol. 2016;207:965-70.

29.

Oldfield

Harrison

Genao

, et al. Patient, family, and community advisory councils in health care and research: a systematic review. J Gen Intern Med. 2019;34:1292-303.

30.

Brooks

. Nursing and public participation in health: an ethnographic study of a patient council. Int J Nurs Stud. 2008;45:3-13.

31.

Haycock

Wahl

. Achieving patient and family engagement through the implementation and evolution of advisory councils across a large health care system. Nurs Adm Q. 2013;37:242-6.

32.

Nielssen

Santana

Pokharel

, et al. Operationalizing the principles of patient engagement through a patient advisory council: lessons and recommendaoldtions. Health Expect. 2024;27:e13909.

33.

Richard

Azar

Doucet

Luke

. Pediatric patient and family advisory councils: a guide to their development and ongoing implementation. J Patient Exp. 2020;7:1476-81.

34.

Selig

Banks

Davis

DeCotiis

Hohman

Schlager

. Incorporating patient advocates in oncology clinical development: lessons learned from a novel pilot program. Ther Innov Regul Sci. 2019;53:349-53.

35.

Warren

. Involving patient and family advisors in the patient and family-centered care model. Medsurg Nurs. 2012;21.

36.

White

. Engaging patients to improve the healthcare experience: involving patients and family members in clinical and administrative improvement initiatives can not only provide patients with a better healthcare experience, but also enhance healthcare organizations’ overall performance. Healthc Financ Manage. 2012;66:84-9.

37.

Halm

Sabo

Rudiger

. The patient-family advisory council keeping a pulse on our customers. Crit Care Nurse. 2006;26:58-67.

38.

Dukhanin

Wolff

Salmi

, et al. Co-Designing an initiative to increase shared access to older Adults’ patient portals: stakeholder engagement. J Med Internet Res. 2023;25(1):e46146. doi: https://doi.org/10.2196/46146

39.

Sharma

Knox

Peterson

Willard-Grace

Grumbach

Potter

. How is family medicine engaging patients at the practice-level?: a national sample of family physicians. J Am Board Family Med. 2018;31:733-42.

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