Abstract
Patient and Family Advisory Councils (PFACs), comprised of patients who have used the hospital's services and their family members, provide hospitals with input on a wide range of initiatives. This qualitative study aims to uncover the facilitators that accelerate and the barriers that inhibit councils and provide hospitals with a blueprint to help them start and strengthen PFACs. Grounded in partnership theory, this exploratory qualitative study used a thematic analysis framework to examine first-person accounts of launching and sustaining a PFAC. The sampling was derived from three groups of potential participants. Participants from 20 hospitals and systems agreed to discuss their councils. Five key themes emerged from the interviews: The PFAC landscape improved after the pandemic, garnering support across the organization is necessary, recruiting ideal members and diversifying the council is critical, effective PFAC operation takes planning, and process and outcome measures can identify the impact and the value of PFACs. Evidence supports patient engagement through PFAC partnerships. However, to ensure a thriving PFAC, the councils require intentional design, diverse participation representing hospital demographics, broad organizational commitment, and systematic evaluation to ensure sustainability and meaningful impact on patient experience and care delivery.
Introduction
When the Institute of Medicine (now known as the National Academy of Medicine) published Crossing the Quality Chasm in 2001, patient-centered care was identified as one of six quality aims. 1 The IOM defined patient-centered care as being respectful and responsive to patients’ preferences, needs, and values, with the patients involved in all clinical decisions. 1 An array of organizations championed this mandate, including the Centers for Medicare and Medicaid Services (CMS), the Agency for Healthcare Research and Quality (AHRQ), and many health systems. One way to focus on patient-centered care is through Patient and Family Advisory Councils (PFACs), which provide hospitals with input about their services. Organizations such as CMS, the Joint Commission, which accredits hospitals, the American Hospital Association (AHA), and others provide resources to help launch and strengthen PFACs.
PFACs are comprised of patients who have used the hospital's services and their family members. One of the first known PFACs in the United States began in 1982 at Boston Children's Hospital. 2 Despite a 40-year duration, according to the American Hospital Association's annual survey, 3 only 54% of responding US acute care hospitals hosted a PFAC in 2023. Yet, the literature is rife with examples of how PFACs have tackled specific conditions, such as diabetes or cancer, or elevated the voice of specific types of patients, such as Black individuals or youth, enhanced patient-centeredness,4,5 and improved patient satisfaction scores. 6
This research aims to identify the key accelerators and barriers of effective PFACs. Prior studies have rarely discussed drivers that contribute to PFAC success, which leaves leaders without evidence-based data on starting or sustaining an existing PFAC for maximum effectiveness. 7 Through a qualitative approach, this study seeks to uncover critical elements that influence PFAC effectiveness. While the literature has not provided executives with a pragmatic blueprint that hospitals can use to establish new PFACs and strengthen existing ones, this research provides concrete recommendations for effective PFACs as defined by the study participants.
Methods
This exploratory qualitative study used a thematic analysis framework to examine first-person accounts of implementing and operating a PFAC. The approach was grounded in partnership theory, which emerged from social scientist Riane Eisler's 1980s work on partnership and domination models. This model views partnerships on a continuum rather than as social constructs of conservative versus liberal, for example. In their partnership model, Kowalski and colleagues 8 posit that partnerships enjoy several qualities, including mutual respect, a safe space for honest communication, and joint problem-solving and planning, among others.
Figure 1, which displays a partnership model from Parent and Harvey, 9 reflects antecedents that impact the behavior of PFACs, such as the specific project, the environment, the fit, and the governance. Management includes the attributes of partnership, communication, and decision-making. Evaluation defines the measurement and the success or effectiveness factors. These characteristics were generally present in PFACs in this study, although in various degrees in the partnership continuum. This framework was used to inform the methodology in identifying potential participants exhibiting these partnership traits. The framework was also employed as an interpretive framework in the discussion. Additionally, this framework can guide hospitals in their quest for a successful partnership with patients and families on PFACs.
Partnership Model.
The potential participants were recruited from a list of the 2024 Patient Experience Symposium keynoters and panelists, listservs focused on patient-centered care and partnerships, and authors who had previously written peer-reviewed articles about their PFACs. An email was sent to them requesting their participation. Eligible participants were employees of US acute care hospitals who worked or had worked with PFACs. Potential participants not employed by hospitals were excluded and relegated to future studies.
Exempted by the University of Nevada, Las Vegas, Institutional Review Board (UNLV-2024-122), 20 semistructured, scripted interviews occurred from August to October 2024. The interview guide covered several categories: Hospital characteristics and the participant's role regarding PFAC accelerators and barriers, the PFAC member qualities and governance, operations, and support. Participants were interviewed via Zoom for 30 to 60 min. The interviews were transcribed through Zoom Transcription and then reviewed for accuracy. The interviews were then deductively coded using a codebook, which was created from the literature review's major topics and themes and reviewed by two authors. 10 The code was then refined after several interviews and applied consistently across all of the interview content. The emergent themes were identified as those the participants mentioned frequently in the conversations.
Results
Participants in the interview included hospital officers, such as the president or vice president, PFAC managers, and coordinators. They represented stand-alone hospitals with as many as 30 PFACs and systems with over 100 hospitals and PFACs. The PFACs were located in 22 states and segmented by regions, as defined by the US Census Bureau in Table 1.
Participants’ Hospital Location.
Five major themes emerged from the interviews: The PFAC landscape improved after the pandemic, garnering support across the organization is necessary, recruiting ideal members, and diversifying the council is critical, effective PFAC operation takes planning, and process and outcome measures can identify the impact and the value of PFACs. Important accelerators and barriers were identified within each of those themes, many of which had not been previously cited in the literature. 10 Table 2 is an overview of the themes, subthemes, and exemplar quotes.
Themes and Quotes.
PFAC Landscape Improved After the Pandemic
Participants reported that the pandemic altered the PFAC landscape dramatically in two ways: First, the need for financial support plummeted because council meetings were no longer in-person, which negated the need for meals. Others hosted hybrid meetings to accommodate those who did not want to drive, park, and walk to meeting rooms. Only one PFAC participant, whose members represented geriatric councils, preferred meeting in person. The second way the pandemic altered PFACs was that the virtual meetings allowed for much more demographic representation and diversity on councils, especially for people who lived distant from the hospital but reflected the hospital demographics. One participant summed up the modality option advantage. “We asked people to come in to discuss heart valve education, and then we realized that the demographic of heart valve patients was 300 miles away.”
The pandemic and its virtual modality prompted hospitals that may not have reached their target demographic to supplement PFACs with e-advisors, some of which comprised as many as thousands of patients who had volunteered to participate in online surveys. Potential survey participants were solicited through the electronic health records. A participant touted the advantage. “You can slice it [database] demographically, pretty exquisitely. We will send out women's health questions for women of a certain age, and only they get that survey.”
The hospital used the survey data, or the results became a springboard for more in-depth conversations. The data have been included for discussion in PFAC meetings, or the hospital formed a focus group, task force, work group, or listening session for the single-topic discussion. This survey process saved two hospitals millions of dollars by not building facilities, which one participant recounted. “We were going to build a clinic and asked, ‘Is this a good location for you?’ They said no, and we saved millions of dollars.”
Garnering Support Across the Organization Is Necessary
Participants identified five types of support:
Executive sponsorship, where the CEO or president visibly backed the PFACs Leader commitment, where high-level champions attended meetings and found content to bring to the meetings Administrative support, where department assistants provided logistical support Department commitment which manifested itself by departments bringing initiatives to the PFAC PFAC member support, where patient volunteers needed to know that their voices impacted initiatives, so they would stay engaged.
Executive Sponsorship
Although some participants’ PFACs functioned without executive sponsorship, most agreed that dedicated sponsorship with top-echelon backing was critical to success. As one participant said, “Knowing that we have executive support within our hospital has been, I think, critical to our success.”
Several participants mentioned that executive sponsorship dictated an organization's culture, which was underpinned by the top executives’ mandate that projects include the patient voice. Top sponsorship included C-suite-level executives (CEO, CNO, etc) attending meetings at least once a year, as described by one participant. “When they [executives] show up to a meeting, people feel like a million bucks. People feel valued. They feel important. They feel heard. It is always the most well-attended meeting of the year.”
But what happened when the executive sponsor departed? A couple of systems tackled this issue in the search and interview process for a replacement. Some systems enhanced their partnership with patients by involving them in interviewing potential candidates. This action validated the importance of the patient voice and a partnership commitment between the hospital and the PFAC. Another participant mentioned that the current CEO was very deliberate in helping select a patient-centered leader interested in engaging patients and families. When the executive sponsor resisted supporting the councils, underlings rallied to prove the value of the PFACs, citing examples of successful projects, coupled with patient stories.
While addressing leadership changes was crucial, gathering support for implementing a PFAC had its unique challenges. Employees found that executives may be hesitant to start a PFAC since they believed that patients may not support a partnership approach but instead may think the council members drive the agenda and will be disappointed if they do not get their way. Hospitals have dealt with this executive hesitancy in two ways. First, documents, such as the charter, bylaws, or standard operating procedures, defined the PFACs’ role, on which some hospitals requested members’ signatures. Second, the interview process was critical in selecting the right people who viewed themselves as participating in the PFAC as advisors. One participant described the recruitment conversation as a partnership. I tell them what this is and what it's not. It is not a union. It is not a support group, and it is not a place to air individual grievances. We're not going to vote and demand that something get done. This is an advisory council. We're advising leadership. We're working with leadership together.
High-Level Champion Commitment
Although executive sponsorship was important, a second type of commitment from department leaders or PFAC champions was equally critical. These high-level employees attended every meeting and identified content to bring to the meetings for members’ feedback. The thread throughout the conversations was these individuals’ passion for patient engagement. At some systems, it was a competitively sought-after position with an application process. A participant described the selected individual. “The person felt like she won the lottery. This is a coveted role.”
At other hospitals, PFAC leaders were appointed by someone in the C-suite. Another participant delineated between the two selection processes. “We've had people appointed and be very unhappy. They see it as just another task that they need to complete. And those PFACs are far less successful.” To inspire interest in the champion role, one system successfully hosted lunch and learn sessions where the PFAC coordinator illustrated the power of the PFAC and their impact on patients, often with patients’ telling their stories.
One system threatened to eliminate PFACs when a champion could not be identified, as one participant explained. We will offer them [departments] the opportunity to just go ahead and sunset the PFAC. Most of the time, the answer is, ‘No, we don't want to sunset the PFAC because it's important to us. We value it, and we want to keep it around.’ They will rethink how they're engaging with the PFAC, which is always great to see.
Administrative Support
In addition to executive sponsorship and champion commitment, administrative support, identified as staffing in the partnership model, was essential in running the PFAC. The administrative support was usually from the department where the PFAC resided. On the organizational chart, PFACs were under one of several departments, such as safety or volunteers. However, most participants indicated that their PFACs fell under the patient experience or patient care departments.
Department Commitment
Support of PFACs across hospital departments dictated whether PFACs could fill the meetings with enough content, which were the initiatives that departments brought to the PFAC meetings. Some hospitals did not have enough content, while others had too much content for the agendas and needed to limit department attendance. Not only did hospital departments generate content, but executive sponsors and leaders frequently suggested that departments bring their projects to the PFAC. Council leaders who attended department meetings queried people in those meetings about including the patient voice in their projects. Other hospitals found content tied to their strategic initiatives. For example, one strategic initiative was to launch a care-at-home program. The hospital took this initiative to the PFAC for their input. Another strategic goal brought to the PFAC was incorporating artificial intelligence into patient touchpoints.
PFAC Member Support
The final area of support was among the PFAC members. Participants recognized the importance of sharing the results of the members’ input, referred to as “closing the loop” with the PFAC, and acknowledged that this information kept the members engaged. In the spirit of partnership and specifically information sharing, some systems asked departments to return in a few months to disclose what they learned at the PFAC meeting and what they did with the members’ feedback. Other hospitals began each meeting with a recap of the results of the previous meeting's input from the PFAC. A participant explained what happened when the PFAC did not learn about the results of their input. “We found that many of our advisors became disengaged because they didn't hear how their voice was being used.”
The participants stated that support from across the organization is important. This includes commitments from executives, champions, administrators, departments, and patient and family council members. In Parent and Harvey's 9 partnership model, commitment is an important construct for a successful partnership.
Recruiting Ideal Members and Diversifying the Council is Critical
Recruitment was another theme and appeared to be one of the most challenging aspects of PFACs, especially demographic representation of the hospital's service area as voiced by one participant. “Many of our PFAC [members] were older White women who had retired.” While some hospitals struggled, others solved this conundrum by expanding recruitment sources. These sources included grievances, word of mouth, pamphlets, discussions with people in the clinic, surveys, visits to the pediatric wards on Mother's Day and Father's Day, after-visit summary messages, tables at hospital entrances, and clinicians’ recommendations. Some participants contacted the patients’ clinicians to confirm that the person should be invited to join the council. This impacted one invitation when the clinician said they had called security about the patient.
Hospitals monitored their demographics as they attempted to identify potential members who matched their analyses, sometimes through electronic health records. A participant described how they interpreted the demographics. We know that research shows that individuals need someone who looks like them and has had a similar life experience to feel comfortable sharing. So anytime our data shows that it would be one person to represent that demographic, we increased it to two so that we can create that environment where they feel safe to speak up.
Interviewing potential members for specific qualities was critical in avoiding issues in the future. One participant described the characteristics they searched for. You need somebody who's not just focused on one thing. You need people that know how to deliver constructive feedback. You do not want people that are really angry because that shuts down a lot of the shared dialogue. You need people that have had the experience of care that you're trying to improve. And you need people that are available for the tasks that you're going to ask them to do. And it's great if you have people that have a good sense of humor.
Foundational to the success of the PFAC was the selection of members. This is where startups wanted to rush the process; however, one participant was careful after a conversation with consultants. The single most important thing was having a very rigorous and selective selection process. And the one failure they [consultants] attributed to the fact that the institution had not rigorously adhered to the selection process. If you're not careful, you get people on the council who have either a personal agenda or a personal vendetta.
Another participant describes the process. “It took us about a year of planning, pulling all the right people together.”
While the hospital and PFAC partnership requires a safe place for honest feedback, mutual respect, and joint problem-solving as described by Kowalski and colleagues 8 in their partnership model, council members may be lacking in one of those areas. Several participants shared that members who were angry about their hospital experience, or were only focused on their issue, and found it difficult to provide feedback on other issues, forced them to shutter their PFACs. While the participant process was vital in uncovering people who were not a good fit or, as one participant said, “Not ready,” there were several other techniques that hospitals used to ensure that “the right people are on the bus.” These practices included trial meetings, document content, and conflict resolution skills.
Before candidates were invited to join a PFAC, some hospitals asked them to attend a trial meeting to ascertain their interest in partnering with the hospital. This try-out revealed patients who “had an axe to grind” and who were focused on one issue or monopolized the conversation, denying others an opportunity to speak. In some cases, candidates were not invited to participate in the PFAC and were instead asked to join other modalities of patient engagement, such as a survey list or as an e-advisor receiving surveys. The council documents provided the operational and logistical plan for the PFAC, which also defined the members’ decorum. Specific documents known by different names, such as norms, read at the beginning of each meeting; charters, updated every one or two years; standard operating procedures; by-laws; and mission and vision statements, provided guideposts for PFAC operations including members’ participation.
While some hospitals relied on one-year term limits facilitating the rotation of people, who were not a good fit, off the PFAC, others relished the opportunity for a one-on-one conversation with the members to understand the issues and resolve conflicts, a tenet of partnership theory. One participant told the story of a council member who had a harsh affect at meetings. During the one-on-one conversation, the participant discovered that the member was on the spectrum and needed guidance on their presentation at meetings, which the PFAC member readily accepted and sought in the future.
Effective PFAC Operation Takes Planning
Another theme that emerged from the interviews was related to PFAC operations. The approach to implementing PFACs often depended on whether the council was the hospital's first or part of an established network of PFACs. First-time PFAC startups relied on research, consultants, and resources, such as the Institute for Patient and Family-Centered Care, Planetree, and the Beryl Institute which provided toolkits. Hospitals that fielded a number of PFACs frequently had their own toolkits for departments interested in starting a council. One hospital had a strict protocol for starting a new PFAC because of its limited resources and asked departments if a specific issue, usually the impetus in launching a PFAC, could be undertaken by a focus group, for example, or a survey, rather than an ongoing council.
Most hospitals followed the same requirements as volunteers with medical tests and training. Some hospitals also taught members skills such as telling their stories succinctly, leading, presenting, and participating on committees. To ensure that everyone's voice was heard during a meeting, some PFACs used a round robin, where leaders asked each member to speak which provided a platform for those who were shy. If members had nothing new to add, they said, “Ditto.” Some PFACs encouraged members to communicate in other ways, such as commenting in the chat, emailing leaders later, or calling leaders to discuss their perspectives. Members were encouraged to keep their comments brief. In most cases, both patients and hospital employees shared the co-chair roles, although sometimes, the co-chairs were only from the hospital. Generally, the patient co-chairs, who were elected, helped ensure the members’ adherence to PFAC protocol during the meetings, select content before the meeting, and prepare the departments for their presentations.
Many hospitals held a premeeting with departments seeking PFAC feedback, which was aligned with the partnership theory construct of information sharing. They reviewed the content the department would cover and the questions they would ask. A participant described a typical premeeting conversation. “You don't give a 20-slide PPT presentation full of jargon and medical abbreviations. That's not going to be a very fruitful meeting. We help them [departments] pare down the presentation to four to five slides.” Some hospitals provided members with premeeting work to prepare them for the discussion and formulate their perspectives. The presentations included specific closed-ended questions, which helped departments zero in on answers they were seeking.
Departments interacted with PFACs in three ways: Stamp of approval, which was where the department asked for approval from the PFAC on an already completed initiative; feedback, where the department listened to the PFAC and provided input on a project in progress; and codesign, where the PFAC was involved at the inception of the project. Hospitals used all three types of engagement; however, some hospitals refused to include departments in meetings where the stamp of approval was sought rather than input on an initiative. As one participant commented, “The rubber stamp was something that we came out against in the early days.” Another added, “The stamp of approval is not respectful. It’s not treating the patients like experts.”
The type of engagement varied among PFACs within large hospital systems and was frequently influenced by the PFAC leaders, who set the tone for departments to include the patient voice. In some systems, most engagement was co-design, where departments sought the patients’ voices before creating the project. A participant underscored this viewpoint. To have patients involved early on saves time, and it saves money. It's actually much more efficient to get input from patients beforehand rather than designing a program, seeing that patients don't like it or that there's problems with it, tinkering with it, and fixing it based on complaints or problems.
Despite the number of hours volunteered by council members, most hospitals did not pay their council members. One hospital offered members a $25 stipend per meeting to cover transportation costs or babysitting, although some members did not accept the money. Another hospital paid PFAC members $50 an hour. One participant explained the payment challenge. “There have been discussions about paying patient advisors; however, that's controversial in our organization. They've decided not to support stipends. We're hoping that will change because we think it comes down to respecting and acknowledging people's time.”
The disadvantage of not paying members is that the council may not reflect the hospital's demographic. As one participant put it, “Volunteering is a privilege.” The people whom hospitals seek for representation may not have the time to offer their services for free. While some hospitals operated without PFAC budgets, others had a minimal budget to host occasional meals and give gifts to the members at year-end. The most often mentioned budget amount was $3000 a year for one PFAC. One hospital relied on donors to fund their activities. A participant described the costs. “The cost was really minimal. And since the pandemic, we're still mostly meeting, either virtually or hybrid. So a lot of those costs haven't come back.”
Frequently, systems dedicated a portion of their budget to an annual summit or quarterly meetings with all the co-chairs or members. In the informal meetings with co-chairs from other PFACs, they learned from each other, shared best practices, and provided updates on various projects. In the more formal meetings, such as summits, CEOs gave the keynotes with high-level leaders in attendance, and PFACs presented successful projects, which raised the PFAC visibility, which, in turn, inspired departments to seek the PFACs’ input.
Process and Outcome Measures Can Identify the Impact and the Value of PFACs
For some hospitals, metrics began with querying the departments that presented initiatives and the PFAC members. One system used quantitative and qualitative questions to solicit feedback from presenters, the latter of which were testimonials. The results were shared at future PFAC meetings and with leadership, which supported the information sharing quality of the partnership model. Another participant distributed a survey to each council member, which the participant described. “We collect data around how they [members] view that particular meeting, the topics in that meeting, and the presenters.” That data were included in leadership reports.
Process metrics, which track activities, were used by many hospitals. These measures included the number of departments that visited the PFAC with initiatives and which departments; the types of engagement, such as a stamp of approval, feedback, or co-design; and the PFAC demographics and alignment with hospital demographics. Participants acknowledged that one of the most important metrics was the number of hours members worked on hospital initiatives, which was impressive to executive sponsors.
Outcome metrics, which monitor the results, were used infrequently; however, several hospitals measured outcomes where possible. Some were tied directly to patient satisfaction scores. For example, one PFAC dealt with low scores for the patient discharge question and another with the question about the hospital rooms being quiet at night. In both instances, the scores increased after the PFACs’ input on initiatives. Less frequently were metrics tied to financial gains. However, one system's interest in promoting respect for patients among employees discovered that the patients’ idea of respect was very different from the hospital's. They had planned to include questions about the hospital's perspective of respect in a survey; however, they revised the question to include the patients’ viewpoint of respect. The participant said, “We pay for a survey per return, so each one of those survey questions costs us a lot of money. We would have made a big misstep on the survey question if we hadn’t included the patient and family voice.”
Twenty single-standing hospitals and systems with more than one hospital shared stories about successful projects where they partnered with the PFAC and impacted patient-centeredness and preferences, as depicted in Table 3.
PFAC Recommendations and Outcome/Response.
Discussion
The findings of this qualitative study illuminated critical factors that influence the success of PAFCs in hospital settings. Our research sought to understand the facilitators that accelerated PFACs and the barriers that inhibited the councils’ effectiveness. Through the analysis of data from 20 interviews with PFAC oversight leaders from various systems, some with more than 100 hospitals and PFACs, and stand-alone hospitals of all sizes across 22 states, we uncovered five essential themes that shaped PFAC effectiveness: (1) postpandemic improvement in the PFAC landscape, (2) the necessity of organization-wide support, (3) the importance of strategic member recruitment and council diversity, (4) the value of deliberate operational planning, and (5) the significance of measuring PFAC impact through process and outcome metrics. Collectively, these findings informed by partnership theory provided a comprehensive blueprint for healthcare organizations seeking to establish new PFACs or strengthen existing ones. The findings emphasized that successful patient engagement through advisory councils requires intentional design, diverse participation, broad organizational commitment, and systematic evaluation to ensure sustainability and meaningful impact on patient experience and care delivery. The participants’ conversations revealed important facilitators and barriers.
The PFAC Landscape Improved After the Pandemic
One facilitator was the virtual meeting modality, as a result of the pandemic, which closed hospitals to on-site meetings. Although approximately 200 hospitals suspended their PFACs in 2020 11 at the start of the pandemic, all of the participants manifested the partnership theory construct of commitment 9 by continuing to engage patients’ and families’ perspectives through virtual PFAC meetings. In a review of US children's hospitals, 86% of responding hospitals indicated that they met at least once between March (the start of the pandemic shutdown) and December 2000% and 72% said that their attendance at virtual meetings was the same or better than before the pandemic. 12
Virtual meetings expanded access to PFACs so they could be more diverse in their participation, an important quality in partnership theory, and more representative of the hospital demographics. The virtual meetings could attract members with young children who did not need childcare while they attend meetings, individuals who did not need to take off from work to travel to meetings, or people who lived long distances from the hospital.
Although the pandemic created significant challenges, it also lowered barriers to implementing PFACs, making it easier to establish virtual PFACs with minimal financial resources, for example, for meals. This allowed hospitals to launch PFACs with few requisite resources, which addressed leaders’ resistance to using scarce funds. Many participants said that their PFACs continued with virtual meetings after the pandemic, so budgets remained reduced, minimizing the barrier to entry for hospitals to implement new virtual PFACs and reap the rewards of partnering with patients and families. According to the AHA 2023 annual survey, 13 PFACs in responding US acute care hospitals climbed 2.47% from the pandemic low in 2021.
Garnering Support Across the Organization is Necessary
The literature supports strong, committed, and engaged PFAC leaders.7,14 Support included executives, leaders, departments to generate content, administrators to handle the logistics, and patients and families. However, no study has differentiated between executives in the C-suite and PFAC leaders. Our findings identified hospital support from both executives in the C-suite and leaders of the PFACs as critical facilitators that directly align with the antecedent construct of partnership theory. C-suite executives can establish a culture of including the patient voice in all initiatives as one participant cited. PFAC leaders who are passionate and committed to patient-centeredness can gain organizational buy-in by showcasing successful initiatives. These leaders serve as champions highlighting impactful projects that demonstrate tangible value, including cost savings that, as two participants reported, have saved hospitals millions of dollars.
However, some C-suite executives may not always be supportive; therefore, the PFAC leader becomes even more integral to the program's success. Partnership theory can provide a valuable framework for guiding PFAC leaders in effective management and comprehensive evaluation. This approach enhances the overall impact of patient-centered initiatives through measurable outcomes. On the other hand, with no passionate leader at the helm, councils may suffer a lack of agenda content derived from departments’ initiatives. The low level of PFAC engagement or stamp of approval may lead to a lack of co-design in project development resulting in minimal to no feedback to PFAC members on how their perspectives have been incorporated into initiatives, and an overall lack of project metrics. In some instances, the lack of co-design where patients’ voices were not included early caused critical work to be redone after hospital employees missed key insights.
Importance of Strategic Member Recruitment and Council Diversity
Another facilitator exemplified in the interviews was patient partnerships. Successful PFACs underscored the importance of methodical and process-driven recruitment of patient and family partners. The implication is that recruiting appropriate members cannot be rushed and may take up to a year to identify the right people. Hospitals cannot rely on a reactive technique where the call for members is posted, and whoever responds is an accepted on the council. Instead, hospitals must proactively identify candidates by analyzing the hospital demographics so that the PFAC demographic mirrors the hospital's demographics. This proactive approach requires hospitals to forgo relying on traditional recruitment tactics and, instead, creatively think about new methods to find appropriate PFAC members, sometimes through the electronic health record, which can easily identify people who match the hospital demographics.
The partnership framework lists a management attribute as communication, although many found this challenging. 9 A second construct in partnership theory and a companion to communication is conflict resolution for which many participants were not trained. For example, four participants mentioned “disruptive” members caused them to close their PFACs. Perhaps PFAC leaders did not know how to communicate with the council members to rectify a situation and preferred to eliminate the PFAC and perhaps restart the PFAC with new members. On the other hand, one participant shared that she valued engaging with members during moments of tension, viewing these interactions as opportunities for conflict resolution and collaborative problem solving, emphasizing the importance of fostering open dialogue, promoting shared leadership, and ensuring a balanced distribution of power within the group, which align with partnership theory. These participants highlighted the important opportunity for training PFAC leaders on communicating with members, facilitating difficult conversations, and managing conflict resolution. While the literature highlights training for staff, no article articulated the need to educate PFAC leaders who need communication or conflict resolution training. 10
Effective PFAC Operation Takes Planning
Governance is another facilitator, highlighted as an antecedent in the partnership model, 9 which includes premeeting, during the meeting, and postmeeting processes and structures. The consequence for hospitals is that this is not a simple meeting but requires time and effort to prepare for and conduct a productive meeting for the presenting departments and the attending PFAC members. PFAC leaders should be trained in selecting meeting content, setting agendas, conducting meetings, resolving conflicts, gathering and analyzing data about the meetings, and reporting to hospitals and council members about the meeting results. These tasks require dedicated personnel who can handle them efficiently and competently. A potential barrier that hospitals could face is setting up a PFAC with little training for the partners, both hospital employees and volunteer patients and families, which could limit the effectiveness of the PFAC.
Significance of Measuring PFAC Impact Through Process and Outcome Metrics
Finally, evaluation is an important facilitator that proves the value of PFACs. In their partnership model, Parent and Harvey 9 list evaluation as a critical component of partnerships. Included in the evaluation are process measures that assess the fidelity with which the program is implemented, and outcome measures that assess the impact of the work. The latter included gathering postmeeting feedback from presenters and council members, both qualitative and quantitative, which some participants did. However, the participants were lax in measuring initiatives before the PFAC had provided input, and then after changes had been made. Although participants oftentimes tracked process metrics, such as the number of meetings, few PFACs measured outcomes that demonstrate the PFACs’ impact and their value. The participants discussed many projects where metrics could have been used but were not. For example, nearly every initiative that impacted safety could have been measured. A barrier to using outcome metrics appears to be the mindset of individuals who do not consider measuring a baseline before the PFAC provided input and then calculating the results afterward. The literature supports the paucity of metrics that mandate a protocol to determine the success and effectiveness of PFAC initiatives.7,10
Partnership theory provides a valuable framework for understanding the dynamic collaboration between PFACs and hospitals. PFAC findings highlight the necessity of commitment, communication, and staffing—core elements of partnership theory—while also revealing gaps, such as conflict resolution and evaluation, including outcome measures. In hospitals, partnership constructs have shifted over time, moving from paternalistic engagement toward more integrated, co-leadership approaches. The COVID-19 pandemic further reshaped the environment by emphasizing the need for flexible, technology-driven participation and diverse representation matching hospital demographics. Partnership theory guides PFAC development by providing a strategic lens for planning, management, and evaluation, ensuring that patient involvement leads to tangible improvements in patient-centeredness and care delivery. By aligning theoretical constructs with measurable outcomes, partnership theory strengthens PFACs’ capacity to drive meaningful, sustainable change within healthcare systems.
This study has several limitations. First, our sample was limited to 20 U.S. acute care hospitals and health systems, which may not fully represent the diversity of PFACs across all healthcare settings, particularly smaller rural hospitals. Second, relying on first-person accounts from PFAC leaders introduces potential recall and self-reporting biases, as participants might emphasize successes while minimizing challenges. Third, our methodology did not include direct observational data of PFAC meetings or quantitative outcome measures, which could have provided additional validation of reported practices.
Conclusion
Patient and Family Advisory Councils were founded in the early 1980s, yet after 40 years, they exist in only 54% of hospitals (AHA, 2024). This qualitative study contributes new insights into important facilitators or accelerators and barriers to starting and strengthening a PFAC. Through the lens of partnership theory, the findings reveal that thriving PFACs require more than good intentions—they demand intentional design, diverse and representative membership, deeply rooted organizational support, structured operations, and systematic evaluation. The shift to virtual engagement, propelled by the pandemic, lowered operational barriers and expanded access, creating more inclusive and demographically aligned councils. However, the success of PFACs is contingent on the commitment of hospital leadership, well-prepared champions, and carefully selected patient and family partners who reflect the hospital's communities and values.
Hospitals must move beyond token engagement to authentic co-leadership models that integrate patient voices from project inception through implementation and evaluation to maximize impact. Developing clear governance structures, providing leadership training, and implementing both process and outcome metrics are essential elements in demonstrating value and accountability. While the partnership model offers a strong theoretical foundation, gaps in conflict resolution training and measurement practices point to opportunities for future refinement. As healthcare systems evolve, PFACs—supported by theory-informed frameworks and robust organizational strategies—can play a vital role in shaping patient-centered policies, improving care delivery, and enhancing overall patient experience.
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.
Consent to Participate
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Declaration of Conflicting Interests
The authors declared that there were no conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethical Approval
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Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Patient Consent
This study was exempted by the University of Nevada, Las Vegas, Institutional Review Board (UNLV-2024-122) for patient consent.
