Patient and Family Advisory Councils for Research

Abstract

OBJECTIVE:

To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs).

BACKGROUND:

Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem.

METHODS:

A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers.

RESULTS:

Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership.

CONCLUSION:

Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

The patient engagement movement is taking hold in research whereby patient stakeholders (patients, caregivers, and family members) are partnering with researchers as active advisors or coinvestigators.¹ It is established that engaging patient stakeholders is possible at all stages of the research process including question development and prioritization, study design and implementation, review and interpretation of results, and dissemination.^2,3 Inclusion of patient stakeholders creates high-quality patient-driven research whereby questions, outcomes, and findings are not only more relevant to patients but more likely to be utilized by patients to make healthcare decisions.^4,5

Patient and Family Advisory Councils (PFACs) are a method for engaging patients as research partners. PFACs are groups of patient stakeholders who regularly meet and share their experiences of care, or collective perspectives on a specific topic.⁶ Research-focused PFACs are an opportunity to engage and partner with PFAC members throughout the research process. Examples of research-focused PFACs and details of their activities can be found in Supplemental Digital Content 1, http://links.lww.com/NNA/A12.^7–13 Ensuring diverse representation of the members of research-focused PFACs is important. Diversity is a foundational principle of patient stakeholder engagement in research as it ensures that as many voices and perspectives are included as possible.^5,14,15 However, PFACs generally suffer from a lack of diversity with an overrepresentation of female, white, and older members.¹⁶ Individuals considered hard-to-reach are often difficult to approach and may be excluded from participation.¹⁷ Individuals from hard-to-reach groups can include racial and ethnic minorities, low-income and low-literacy populations, children and adolescents, older adults, sexual- and gender-diverse populations, or those who are geographically isolated in rural or remote locations. Exclusion of these groups from PFACs creates research that may not be designed, implemented, or disseminated in a manner that includes their perspectives. Further research findings may not be generalizable to these diverse groups, and specific findings that are relevant to these groups may be missed.¹⁷

While there have been significant efforts to understand barriers and facilitating factors that influence the inclusion and exclusion of hard-to-reach groups in research more broadly,^17–19 there has been limited attention to how to increase the diversity of PFACs, particularly those engaged in research. This is despite the proliferations of guidelines that state that PFAC membership should be as diverse as possible.²⁰ Therefore, the aims of this study are to describe strategies to recruit and then support members from hard-to-reach and diverse groups on research-focused PFACs.

Methods

Study Design and Ethical Approval

We used focus groups and interviews to conduct a qualitative study. The University of California San Francisco (UCSF), Brigham & Women’s Hospital (BWH), and Christiana Care Health System (CCHS) committees on human research reviewed and approved this study.

Patient Stakeholder Engagement

Patient partners (C.H., G.S., J.B., M.B.C.) are coinvestigators of this study. They have been involved in all stages of the study including development, implementation, data analysis, and dissemination.

Setting and Participants

The study took place within the Hospital Medicine Reengineering Network (HOMERuN), a research collaborative that facilitates and conducts multicenter research to improve the outcomes of patients with acute illnesses.²¹ HOMERuN is a collaboration of 14 academic and community-based medical centers across 9 states in the United States and includes an interprofessional team of clinicians and researchers. Using purposive sampling, we asked HOMERuN investigators at each site to identify and invite via email PFAC leaders, hospital leaders, and researchers who: 1) had previous experience in patient engagement; and 2) had experience recruiting hard-to-reach groups into PFACs; or 3) were members of PFACs who had at least 1 member from a hard-to-reach group (Table 1). We then invited PFAC members (patients, family members, or caregivers) from 4 HOMERuN sites—UCSF, BWH, CCHS, and the University of Pennsylvania to participate in a focus group. These sites were chosen because of the feasibility of being able to conduct in-person focus groups. Focus group participants were provided with a $25 gift card.

Table 1.

Participants and Data Collection Approach^a

Focus group 1	8 PFAC members	1 PFAC leader
Focus group 2	3 PFAC members	1 PFAC leader	1 researcher
Focus group 3	5 PFAC members	1 PFAC leader
Focus group 4	9 PFAC members	2 PFAC leaders
Focus group 5	7 PFAC members	1 PFAC leader
Focus group 6	4 PFAC members
Focus group 7	9 PFAC members
Focus group 8	9 hospital leaders
19 individual interviews	7 PFAC leaders	3 hospital leaders	9 researchers

^aPFAC members are patient, family member, and caregiver members of PFACs; PFAC leaders are hospital staff who manage PFACs; researchers are researchers with previous experience in engagement; hospital leaders are medical center leadership involved in patient/family engagement.

Data Collection

We used structured interviews with participants in person or over the telephone to collect study data.

Focus groups with PFAC members and PFAC leaders were held in person. An additional focus group with hospital leaders and researchers at CCHS was also conducted. Participation by participant type and method of data collection is shown in Table 1. We developed a study-specific interview and focus group guide informed by previous work on patient engagement in research.^2,22,23 The guide included specific questions that focused on participants’ experiences and the challenges of engaging diverse members in PFACs for research (Supplemental Digital Content 2, http://links.lww.com/NNA/A13) and was pilot tested and approved by the patient partners on the study team. The interview and analysis team had no prior established relationships with study participants. All interviews and focus groups were digitally recorded.

Data Analysis

We deidentified the transcripts of focus groups and interviews to ensure confidentiality and limit analytic bias.²⁴ We organized data analysis around the study questions—strategies to recruit and then support members from hard-to-reach groups on PFACs that are engaged in research. We used content analysis to then systematically examine the transcripts in order to obtain a condensed understanding and description of content.²⁵ We used a data-driven (inductive) approach to analysis whereby codes were identified solely from transcripts.²⁵ Two trained reviewers (J.D. and S.C.) independently performed open coding using both a theory-driven and data-driven approach to identify coding categories. To ensure methodological rigor, throughout analysis reviewers (J.D., S.C., and J.D.H.) met to refine and define coding categories, and coding disparities were discussed and resolved by negotiated consensus.²⁶ Coding categories were then grouped into higher-order categories.²⁵ Patient partners on the study team were asked to participate in data analysis and to help choose the nomenclature for codes and categories to ensure they remained relevant and meaningful from their perspective. All analysis was completed in Dedoose (8.0.35; Los Angeles, California).

Results

Participants and Data Collection Methods

Eighty participants including 45 PFAC members, 12 PFAC leaders, 11 researchers with experience in patient engagement in research, and 12 hospital leaders participated in 8 focus groups or 19 individual interviews. Study participants represented 9 sites from the research network HOMERuN. Participation in focus groups or interviews is summarized in Table 1. In total, 48 women and 32 men took part in the study. In terms of the racial make-up of participants, 54 (68%) were white; 10 (12%), African American; 11 (14%), Asian American; and 5 (6%), other. The average length of focus groups was 52 minutes (range, 19–82 minutes) and interviews 29 minutes (range, 17–43 minutes). Code saturation appears to have been reached given the same codes, and concepts were reported in the final focus groups and interviews.

Strategies to Recruit Diverse Members Into Research-Focused PFACs

We identified 4 codes describing actionable strategies that have been successfully used to recruit and engage diverse members for research PFACs. This included being strategic about “recruiting from outpatient clinics,” particularly those clinics that provide care to hard-to-reach groups, and also “going out into the communities” to engage and obtain representation. Other suggestions included “utilizing existing networks,” such as colleagues or existing PFAC members, or “using social media for recruitment.” Codes, code descriptions, and representative quotes are shown in Table 2.

Table 2.

Recommendations for Recruiting PFAC Members From Hard-to-Reach Groups—Code, Code Definitions, and Representative Quotes

Code	Code Definition	Representative Quotes
1. Utilizing existing networks	Suggestions that PFAC leaders should think broadly about their professional and personal networks to identify opportunities for outreach.	“Some of my colleagues—unbeknownst to me—had links formed with a socioeconomically disadvantaged tenancy group, and we then conducted outreach programs with groups like that” (researcher).
		“I think that some avenues that might work would be… patients that have already been recruited for other research studies. They at least have shown some interest in being involved, and that might be the entry to approaching them again” (PFAC member).
2. Going out into communities	Advice for creating and recruiting into research PFACs whereby researchers, academics, and health professionals venture out to meet potential PFAC members in their own community rather than expect them to come to an academic or healthcare institution.	“Taking a page out of the playbook of community-based participatory research might be a good thing… so trying to go to communities where there may be connections… that could be a launching pad for connecting with people who could be on the PFAC” (hospital leader).
		“It might be worthwhile to meet with members of the community health centers… especially to have them reach out to the population that you’re trying to recruit… they’re a wealth of knowledge” (researcher).
3. Recruiting from outpatient clinics	Utilization of outpatient clinics serving diverse communities as potential venues to recruit hard-to-reach groups.	“If you’ve got contacts with primary care clinics in certain parts of cities that serve disadvantaged groups… we’ve sent someone out to speak to the primary care providers who can then act as almost like a go-between with their patients to try and draw people in” (researcher).
		We have specialty clinics in the neighborhood health centers… so we were able to talk to patients from that group” (hospital leader).
4. Using social media for outreach	Use of social media, online networks, and online platforms as examples of successful recruitment strategies.	“We now use social media. We use a Facebook page to engage them. So it’s coming up with those unique ways to meet them, what meets their needs” (PFAC member).

Recommendations to Support PFAC Members From Diverse Populations During Research Engagement

We identified 5 codes describing practical steps that have been used to support PFAC members from diverse groups who are engaged in research. These included “using culturally appropriate communication methods” during interactions and “setting transparent expectations” about what participation as a research partner involves. Ensuring a “diverse PFAC leadership team” was noted as an important consideration that would make PFAC members feel more comfortable. Activities that “build trust and community between all PFAC members” and that “break down hierarchies between community members and PFAC leaders/researchers” were seen as essential to allowing PFAC members from diverse communities participate freely. Codes, code descriptions, and representative quotes are shown in Table 3.

Table 3.

Recommendations for Recruiting PFAC Members From Hard-to-Reach Groups—Code, Code Definitions and Representative Quotes

Code	Code Definition	Representative Quotes
1. Using culturally appropriate communication	Examples of using culturally appropriate language (verbal and print) when communicating with different groups of patients	“So you have to be very sensitive to these things… in terms of, are you addressing their core values and leveraging their core values in the language choice, the word choice, appropriate language, and cultural expectations with those interaction” (PFAC leader).
		“I think, 60%, their primary language is Spanish… we hired a Spanish-speaking pharmacist who is fully fluent Spanishspeaking. So we made sure that we never had to turn a patient down” (researcher).
2. Building trust and community between PFAC members	Suggestions for building trust and sense of community between PFAC members especially those from hard-to-reach groups. PFAC members feel more engaged if they know there are other members and can interact with them.	“It solidifies a group, just like it does with our peers and our colleagues. So, how do we advance those relationships? We spend time together…” (PFAC member). “They’ve asked us for very specific things, and one of the things they’ve asked us for is a document, with each of their pictures and a little background about them and contact information. Everyone agreed that they want to be in touch with each other, so they could actually call each other, even during the downtime. That was one thing they asked for” (PFAC leader).
3. Breaking down hierarchies and power dynamics between PFAC members and PFAC leaders/researchers	Acknowledgment of the fact that actual and perceived hierarchies and power dynamics exist between PFAC leaders/researchers and PFAC members. Specific and targeted activities should take place early during the engagement process to break these down. This will allow PFAC leaders/researcher and PFAC members to be more equal, and this facilitates engagement.	“They come in, and they sign in. Everyone signs in. And we have name tents so that everybody can be called by their first name… when we’re in these councils, a physician can look at someone and say, ‘Jane, what do you think about that?’ It’s that community and the partnership” (PFAC leader). “I think, as patients and caregivers, we think that the investigators or hospital staff are always going to be the experts, so it’s, in a way, a top-down sort of relationship…but I think it’s really important to remember that researchers and hospital staff don’t necessarily know how to engage patients and caregivers. I think it’s a 2-way street, that we can all be respectful to one another” (PFAC member).
4. Having a diverse leadership team	Diverse representation in the PFAC leadership team allows those from hard-to-reach groups identify with leadership and allows them to feel more comfortable participating.	“I think it’s very important to reach people where they are. If you have someone in your leadership group—or 2 or 3 people in your group—that looks like the population you’re representing, it’s much easier to reach them” (researcher).
5. Setting transparent expectations	PFAC members should be told what they are getting into from the beginning in terms of research pace, time commitment, what they are expected to do and not do; PFAC members given specific tasks/goals.	“I can tell you from our experience …our patients and families like to see information upfront. When we have information that needs to be reviewed, or patient education material, those types of things, they like to see it upfront, prior to coming into a meeting…” (PFAC leader).

Discussion

PFACs are increasingly being accessed, or created, for the purposes of engaging patient stakeholders as partners or coinvestigators in research.²⁷ This engagement is now often expected and highly valued. However, ensuring diverse representation of PFAC members remains a challenge, especially those considered from hard-to-reach groups.¹⁶ While there are efforts to address underrepresentation of these groups as research study participants,^17,18 limited attention has been given to how to overcome this issue for research-focused PFACs. This study not only provides key insights and recommendations for recruiting diverse PFAC members but also suggests strategies to support these members once they are engaged in research.

Our study clearly recommends that during the recruitment process, research PFAC leaders must look beyond their healthcare or academic institution and go out into the communities that they are seeking to engage. It is particularly noteworthy that participants of this study who were recruited from hospital settings made this telling suggestion. This finding confirms that a more patient-centered approach to recruitment involves meeting people where they are at—this approach is commonly used in community-based participatory research.¹⁹ A successful example of this is demonstrated by the Community Advisors on Research Design and Strategies initiative.²⁸ Researchers from an academic institution engaged 2 community centers to deliberately create groups of hard-to-reach advisors from racial minority, low-income, and low-literacy community members. These groups meet monthly and are accessible to researchers who want to partner with the community members to obtain their perspectives on research topic selection, materials, and processes.²⁸ Creating research PFACs within community settings is a promising strategy to ensure that representative members can be engaged in research.

Using social media for outreach and identification of PFAC members as suggested by study participants presents a new opportunity. Social media advertising and a presence on social networking sites are promising methods that can increase the number of diverse participants in a research study,^29,30 meaning that this same approach could also work in the context of PFAC recruitment. In addition, the increase in prevalence of e-advisors, patient stakeholders who solely provide feedback to healthcare institutions through online platforms, presents another nontraditional method to engage potential patient stakeholders in research.³¹ As an alternative to traditional in-person PFACs, online research communities could also be created, for example, the “Patients Like Me” collaborative that has helped inform a type 2 diabetes research agenda.³² It is likely social media and other online technologies will have an increasing role in diversifying the membership of research PFACs.

Building trust and a sense of community between all PFACs members including those from diverse groups is not a surprising finding in our study, given these principles are central frameworks describing patient stakeholder engagement in research.^5,6,15 Building genuine relationships is noted as the primary, and most important, part of the engagement process when researchers partner with hard-to-reach rural residents.³³ Having activities that break down the real and perceived hierarchies that exist between hard-to-reach individuals and research PFAC leaders is another important finding from our study. For example, study newsletters, “ice breaker” sessions, or social events to allow teams to get to know each other on a personal level are some potential strategies.²⁷ The need to build rapport and relationships is a reminder that many individuals from these groups are apprehensive to partner because of a historical mistrust of research and also concerns about openly disclosing medical information about themselves for fear of stigma or privacy concerns.¹⁹

Study participants cited the importance of using culturally appropriate communication methods as a necessity to ensure full participation of all PFAC members. For example, the use of interpreters during PFAC meetings was 1 strategy used by 1 researcher. Further strategies to assist engagement efforts of hard-to-reach groups are described in an emerging number of resources available for patient stakeholders, researchers, and PFAC leaders.^20,34

Our study has a number of limitations, including that all participants were from urban academic medical centers, meaning that the results may not be generalizable to all settings such as a community or rural ones. Although there was some diversity in our study sample (32%), those from hard-to-reach groups remained in the minority, and we did not collect information on other markers of diversity such a literacy, income, sexual orientation, or gender identity. Future efforts should try to ensure that the majority of study participants are from the underrepresented groups. Finally, the activities to support PFAC members from hard-to-reach groups were not always explicitly defined and will require further work to determine.

Increasing the diversity of research-focused PFACs is a priority, and as such, it is important to determine how best to engage groups that have been traditionally underrepresented. Further, once engaged, these PFAC members must feel supported and included. Our study has identified a number of deliberate strategies that can be employed. PFAC leaders should venture out into the communities that they seek to engage. Research PFACs can also be operationalized to support the inclusion of diverse community members, thereby allowing them to fully participate and engage in all stages of the research process.