Abstract
Purpose:
There is limited research on the use of community advisory boards (CABs) in health research with transgender and nonbinary communities. Transgender communities are navigating challenging histories of health researcher exploitation and research distrust alongside exponential research growth. We explored strategies for forming and managing CABs when conducting transgender community-informed health research.
Methods:
We used purposive and snowball sampling to identify key informants (KIs): research leaders, implementing staff, and community partners engaging in transgender health research. Between October 2018 and December 2020, we conducted 30 semi-structured in-depth interviews. We used coding followed byiterative thematic analysis and memoing to identify themes.
Results:
KIs emphasized the importance of involving CABs early in the research process and communicating transparently about their decision-making power and roles. They urged research teams to anticipate and address both multilevel (e.g., gender affirmation-related and socioeconomic) and historical (e.g., local research harms) barriers to CAB participation, and to intentionally engage groups that are historically underrepresented in research. KIs warned against tokenistic CAB models and called on researchers to show up for transgender communities beyond research goals. Research-related trainings and skills-building opportunities could equip CAB members to contribute meaningfully to research decisions, but KIs find that they are often under-planned and under-budgeted.
Health Equity Implications:
This study contributes to our understanding of how to engage and support CABs working on transgender health research, and how sociostructural factors shape their experiences. We offer a series of recommendations and questions researchers should consider when forming CABs for transgender health research and community-informed research broadly.
Introduction
In recent decades, transgender, nonbinary, and gender diverse communities have developed and published recommendations and methods for meaningful community engagement in research.1,2 In many ways, this work is a response to biomedical and public health researchers using methods rooted in exploitative frameworks that position transgender communities as mere subjects of research and alienate many from opportunities to engage and lead in research.
Historically, cisgender-centered research methods include erasure and exclusion of transgender people and experiences in data and research instruments; conflation of sex and gender; undervaluation of transgender scientists, leaders, and community members’ expertise; pathologizing and invasive practices; research driven by funder and academic interests rather than community priorities; and limited research dissemination and use of research to support community goals.3–7 Long-standing use of these methods has led to deep distrust in research among transgender community members.
Even with the growing use of community-informed and -engaged, community-based participatory, and community action research over the past 25 years, there is a great need for research about the complexities of implementing and sustaining community-informed methods and strategies for addressing challenges that arise in practice.7,8 Community advisory boards (CABs) are a widely used tool for engaging communities in research. CABs provide “a mechanism for community members to have representation in research activities” and are usually set up as collaborative bodies of community and research stakeholders.9,10
The structure, process, and makeup of CABs varies widely. Members may be asked to take on diverse roles depending on the community-informed research model chosen—from relatively common models in which academic researchers seek “community input, but retain control, ownership, and management” of the research, to community-owned research models.8,9 Common CAB responsibilities include raising study awareness within the study population, supporting participant recruitment and retention, and guiding research dissemination. CABs can also help researchers build community relationships and address distrust between researchers and historically exploited communities.
Though researchers and organizations from a variety of disciplines have published guidance related to forming and managing CABs effectively,9,11–13 there is limited research on using CABs in health research with transgender communities—who are navigating unique and challenging histories with researchers alongside exponential growth in research about their communities (including what Lett et al. have called health equity tourism 14 ). Our qualitative study aimed to explore experiences conducting engaged research with transgender communities to shape the development of a community-informed research project with transgender communities in Baltimore, Maryland, called Communities Leveraging Evidence for Action and Research or CLEAR.
Methods
Sampling and study participants
We used purposive and snowball sampling methods to identify key informants (KIs): research leaders (leaders; e.g., principal investigators), implementing staff (staff; e.g., research coordinators, data collectors, recruiters), and community partners (partners; e.g., CAB members, community consultants). Individuals 18+ years of age with experience working on health research that involved collaboration with transgender communities were eligible to participate. We conducted one round of interviews (n = 18) October 2018–April 2019, predominantly engaging leaders. We conducted 12 additional interviews May–December 2020, prioritizing staff and partners.
Data collection
Authors M.M., a.a., and A.B. conducted semi-structured interviews by Zoom (n = 27) or in person (n = 3). The interview guide covered three key domains: (1) strategies for building trust with transgender communities, (2) methods for engaging transgender communities in research processes, and (3) community capacity building and research dissemination. All interviews were audio-recorded and transcribed verbatim. Interviews lasted 65 min on average (range: 27–108 min). KIs provided verbal informed consent and completed a brief sociodemographic survey. Transgender KIs or KIs who volunteered at transgender community organizations received a $40.00 honorarium (USD). All research protocols and procedures were approved by the Johns Hopkins Bloomberg School of Public Health and the Maryland Department of Health Institutional Review Boards.
Analysis
M.M. and a.a. led codebook development and coding with support from project investigators J.L.G. and D.G. M.M. and a.a. developed a priori topical codes based on the interview guide and thematic codes through data review and debriefing. M.M. and a.a. used the preliminary codebook to independently analyze the same three interviews, conducted side-by-side comparisons of these transcripts, and iteratively revised the codebook. M.M. and a.a. then recoded the initial three transcripts with the revised codebook and divided remaining transcripts for coding in ATLAS.ti Web.
Though we did not include questions about CAB experiences in the original interview guide, interviewers asked about different ways that transgender communities had been involved in their research. Responses elicited reflections on CAB experiences, which were further probed. We began asking intentional questions about CAB experiences partway through data collection in response to debriefing conversations about CAB experiences and ongoing project development (e.g., CLEAR CAB recruitment). We created four codes related to CAB experiences: challenges, positive outcomes, strategies for success, and other reflections. M.M. exported and reviewed all quotes coded under these codes, writing summary and analytic memos to consolidate themes and illustrative examples for this article. Twenty-three of 30 KIs discussed CABs during their interviews: 13 leaders, seven staff, and three partners. Participant characteristics are summarized in Table 1.
Participant Characteristics
Sociodemographics are reported for all 23 key informants (KI) unless otherwise specified, that is, missing data.
Two KIs identified as Hispanic and White, and one KI identified as Philippine Mexican.
One KI identified as South Asian mixed race, and the Philippine Mexican KI was counted in this category also.
Reflexivity
Our qualitative study was motivated by the CLEAR research team’s collective awareness of local transgender communities’ distrust of researchers and their calls for collaborative research that is responsive to community needs. During regular analysis meetings (four cisgender individuals from the CLEAR research team, racially diverse, all academic researchers), we engaged in intersectionally reflexive conversations8,15–17 to debrief emerging themes in relation to study motivations. These conversations involved thinking critically about how we might use KI recommendations and address anticipated challenges by leveraging lessons learned from past research and the lens of our identities and social positions. For example, we reflected on the importance of transparent communication about CAB roles and decision-making power (including limitations on decision-making power), as KIs suggested, but also grappled with how to facilitate these discussions without reinforcing power hierarchies between our research team and CAB members. The research team (approximately half transgender and half cisgender individuals, racially diverse, half practice-based public health practitioners, half academic researchers) and CAB (all transgender individuals, racially diverse, diverse professional backgrounds, including activism, arts, health care, social services, law) participated in these conversations following each round of interviews. Our reflexive process informed interview guide and codebook revisions, supported data interpretation, and encouraged the research team to implement KI recommendations internally.
Results
Participant characteristics
The total sample (n = 23) ranged from 27 to 61 years (mean age = 42 years), reported 4–30 years (mean = 14 years) working with transgender communities, and represented multiple teams, organizations, and institutions. Over half (61%) were transgender or nonbinary. Of the 73 quotations related to CABs that comprise this dataset, 66% were from transgender KIs. Most KIs were White (57%), followed by 26% Black, 13% Hispanic or Hispanic multiracial, and 4% Asian or Asian multiracial. Most KIs were based in the U.S. Northeast (39%), followed by the Southeast (22%) and the West (22%).
CAB models and decision-making power
KIs described a spectrum of roles CABs play in transgender health research, including groups consulted “as needed” (KI6 transgender-staff), groups with discrete, limited advisory tasks, and groups treated as equal decision-makers throughout all research stages, that is, a community-based participatory research model. Some examples of CAB roles included survey development and feedback, feedback on data collection tools and procedures, input on staff hiring and challenging study scenarios, and recruitment advice.
Several KIs offered examples from community-informed CAB models, generally involving sustained CAB engagement. KI26 (transgender-leader) worked on a project involving a “transparent budgeting process,” in which researchers shared spending and salaries with CAB members and collaborated on some spending decisions. KI15 (cisgender-leader) worked alongside a transgender CAB tasked with reviewing and managing approval processes for data use requests.
KIs raised questions about the purpose of CABs, rooted in concerns about research teams’ underlying motivations for forming CABs. They highlighted that CABs can feel like a form of “lip service” (KI22 transgender-staff) to transgender communities, noting the ubiquity of CABs “in name only” (KI12 transgender-leader) in transgender health research. Relatedly, KI18 (transgender-leader) expressed that “most CABs are completely useless” because “[CAB members] don’t have any real sense of decision-making power” and are often used for recruitment help only. Relatedly, KI22 (transgender-staff) highlighted concerns about tokenistic CAB roles (e.g., “Right, so, I think not just having them look at images and say, ‘is this transgender enough for an ad?’ Right? Or, ‘do these gender questions make sense?’”) and called for collaborative models in which CAB members are involved in research decision-making like salaried staff.
KIs highlighted that true collaboration requires that researchers give up some power, which may not be possible under all research models (e.g., given time and budget constraints, academia-related structural and institutional barriers). Irrespectively, they recommended practicing transparency in relation to study decision-making structures, the extent to which transgender people are involved in decision-making, and CAB purpose (e.g., renaming a CAB a recruitment committee if only recruitment support is expected). KI18 (transgender-leader) described a study in which decision-making structures were outlined openly in an online Frequently Asked Questions page.
Timing and CAB engagement
Conversations about CAB decision-making power were often coupled with discussions about challenges related to the timing of CAB engagement. Early engagement was seen as a critical way to value transgender community input in the research process, rather than seeking input after important decisions are made. KI4 (cisgender-leader) noted that it can be particularly challenging to repair community relationships when CABs are engaged late, especially if both late and in a limited role. KI18 (transgender-leader) reflected on the “amorphous long-term” commitment sometimes associated with CABs. Though dependent on the research model, linked to practicing transparency, KI18 recommended engaging CAB members for “targeted short-term asks” instead when relevant.
Though KIs felt strongly about engaging CABs early and co-creating research with community members, they also discussed the challenges of planning and budgeting for the time required to build the trusting relationships needed to establish effective CABs.
KI15 (cisgender-leader) highlighted the disparity between the time investment expected of transgender communities by researchers, including by serving on CABs, versus the time it takes for research outcomes to reach transgender communities: “Research happens, there’s a lot of time investment, or it’s done in bad ways or good ways, or whatever, but like it just never comes back in a way that seems to help the community. So, people are putting in their time, their energy … and they don’t see much coming back.” Echoing earlier points on practicing transparency, some KIs as well as members of our CLEAR CAB stressed that researchers should convey how and when CAB-supported research will be used to implement important changes (e.g., inform policies, programs, and services related to community needs). KIs also suggested sharing study results with CABs throughout the research process and working with CABs to identify strategies for effective community-oriented and wider dissemination (e.g., one-pagers and newsletters, hosting webinars, helping community organizations use study findings to inform grant proposals and policy advocacy that advances transgender community priorities).
Recommendations for forming and managing CABs
Recruitment process considerations
KIs shared strategies related to the process of forming CABs, stressing the importance of anticipating potential barriers to applying and participating. KI26 (transgender-leader) suggested offering informational sessions and support for completing application materials and cautioned against “cherry-picking” CAB members. KI12 (transgender-leader) recommended considering who has not been “invited to the table” to shape transgender health research historically to avoid reproducing structural oppressions transgender people face already (e.g., ending up with an all-White binary transgender CAB). KI26 (transgender-leader) recommended engaging respected community members known to speak their minds as it could help “give the other people permission … to talk” during CAB meetings.
Several KIs noted the importance of understanding local histories, community norms and relationships, and community priorities before forming transgender CABs, including understanding past research harms (KI29 transgender-leader, KI12 transgender-leader) and whether visible community leaders truly represent their communities (KI24 cisgender-leader).
In discussing community-informed methods broadly, KI14 (transgender-staff) noted that investing in transgender community needs and showing up for transgender communities within (e.g., fair compensation for CAB work) and outside of research (e.g., sponsoring community events, using research to support policies and programs) can help to ensure community members feel valued and understand the need for research when considering involvement in research through CABs and beyond. Powerfully, KI29 (transgender-leader) shared an example of a CAB that felt “transactional” initially because “not any effort [was] expended in finding out who I am or what I thought was important.” The research team repaired their relationship with KI29 because they were open to feedback and started “spending real time in the community getting to know community members” (e.g., the research team, including cisgender researchers, started attending community events).
Member skillsets and tokenism
Some KIs discussed considerations related to CAB member skillsets, including a tendency to focus on transgender identity as the central qualifying skill for CABs, alluding to previously mentioned issues of tokenism. KI18 (transgender-leader) stressed that CAB members need to feel prepared and equipped to participate in research discussions meaningfully versus “… just being like, ‘oh, this person is transgender and has ideas,’ right?” KIs recommended that research teams gauge CAB members’ research and other relevant skills, anticipate training needs (e.g., research operations, research methods, academic systems), and build in opportunities for skills-building. KI18 (transgender-leader) also cautioned against engaging CAB members with limited research experience if the research team or institution lacks the infrastructure to truly support them.
Managing internal dynamics
KIs felt it is important to anticipate power differences that could influence engagement in CAB conversations and tasks. KI27 (transgender-leader) noted that CAB members may defer to employees who have a “fairly strong sense of how to navigate the institution” and recommended individual follow-up conversations with CAB members when such issues arise. KIs also felt that some perspectives may be overlooked in community spaces or depending on the identity and sociodemographic makeup of a CAB. In response, KI28 (transgender-partner) suggested intentionally framing questions for particular groups “because then those are the only people that can answer those questions” (e.g., framing questions around transmasculinity to elicit transmasculine perspectives).
KI14 (transgender-staff) offered creative strategies, like setting up a clothing closet and makeup to ensure transgender individuals facing barriers to gender expression or experiencing housing insecurity, for example, “can show up in a way that they are their best selves” and see CAB spaces as inclusive and accessible. KI12 (transgender-leader) and others recommended establishing working group agreements related to anticipating and addressing power differences between CAB members and between CAB members and research team members, working through conflict and challenging conversations supportively, anticipating how traumas could arise during CAB work, respecting and listening to each other, encouraging reflexive reflection (e.g., how race and gender are shaping research experiences), and maintaining accountability to CAB input (e.g., not asking research questions that have already been asked of transgender communities).
Further, several KIs highlighted the importance of really engaging with CAB members on a human level and trying to understand “background things that are influencing how someone shows up at a meeting” (KI27 transgender-leader).
Discussion
This study contributes to our understanding of the best processes for engaging and supporting CABs working on health research about their communities.9,18–26
KIs stressed the importance of researchers valuing and knowing transgender communities—as human beings, by showing up for and investing in transgender communities beyond research (and whether or not these efforts serve research goals directly), and understanding community needs and local histories. KIs recommended research teams think intentionally about how personal and community circumstances (e.g., gender affirmation-related needs, research distrust experiences, dimensions of identity and social position, class experiences, material hardship, and other axes of privilege and disadvantage), rooted in intersecting structural oppressions, may influence CAB experiences. This includes whether and how transgender people can learn about CABs and other opportunities to shape research, feel equipped to apply and participate meaningfully, and feel like they belong in research spaces.
Ideally, in partnership with transgender scientists and community partners, research teams should learn about potential multilevel and historical barriers to joining and engaging in CABs before embarking on research and identify feasible strategies for addressing them.
“Community advisory board” has come to be used as an umbrella term spanning many roles and decision-making and accountability structures between CAB members and researchers. The community-informed research models research teams adopt are often influenced by funding and study timelines and scope, funding landscapes for particular health issues and populations, academic career pressures, and even researchers’ discomfort giving up control. KIs highlighted the importance of research teams practicing transparent communication with CAB members and their communities about CAB roles and decision-making power, including how and why it may be limited. This requires selecting a community-informed research model and conducting formative work early, ideally before research questions are set, because the model selected could influence the earliest steps of the research process.
As this sequencing is counter to most public health funding structures, researchers can play an important advocacy role in pushing funders to rework their processes to support community-informed research. Researchers must also continue to question research models in which community decision-making power is limited—even if more fundable, less complicated and expensive, and faster—given continued calls for community-led work and deeper collaboration between transgender communities and researchers.1,6,7
Planning and budgeting for training and capacity-building opportunities for CAB members emerged as an under-addressed component in CAB planning. While funding for this work is limited—another call to funding bodies—researchers have a responsibility to ensure CAB members feel empowered to contribute to research in their CAB roles. As transgender people face widespread barriers to education and employment, 27 investing in skills-building and trainings is also an investment in pipelines to work for transgender communities.
It is also important that research teams are transparent about their capacity to support CAB members through trainings and communicate clearly about CAB job expectations and qualifying characteristics, including but not limited to lived experiences that are relevant to a study. Otherwise, researchers run the risk of damaging relationships with transgender communities and using tokenistic methods.
Limitations
A key limitation of our work is greater engagement of leaders compared with staff and partners, who may be better equipped to speak to CAB experiences. Further, around one-third of KIs were racial or ethnic minorities, none identified as Indigenous, and few as Asian or Pacific Islanders. Future work should prioritize racialized perspectives and knowledge, including unique methods for building trust and community relationships. Transfeminine people, particularly racialized transfeminine people, were greatly underrepresented in our sample, thus reproducing underrepresentation of transfeminine people in academic work broadly. Data were collected from 2018 to 2020 and because community-informed transgender health research is growing rapidly, KIs may have new strategies to offer if interviewed now.
Conclusions
Integrating the recommendations summarized in Table 2 and the literature on best processes for forming and managing CABs9,18,23 in Table 3, we offer a list of questions transgender health researchers should ask themselves prior to the research process and revisit iteratively. These questions may also serve as a guide for transparent communication with CABs and transgender communities. Answering these questions likely requires formative research and community engagement. As researchers working to address the health needs of transgender communities, collaborative work with CABs and other community partners must center values of health equity and justice for transgender communities. 28 Building intentional CABs is one method toward achieving these shared goals.
Summary of Recommendations for Forming and Managing Community Advisory Boards for Transgender Health Research
The following quote references community co-investigators in particular, but it was shared during a conversation about different kinds of community roles in research, including CABs.
CAB, community advisory board.
CAB-related Questions Research Teams Should Ask Themselves Prior to the Research Process and Revisit Iteratively as a Study Progresses
CAB, community advisory board.
Footnotes
Acknowledgments
The authors are grateful to all key informants for their stories and reflections, and to the CLEAR CAB and research team for providing support and thoughtful feedback throughout the research process. The authors thank the many transgender and nonbinary community members, leaders, and organizations from Baltimore who helped to build the CLEAR project and continue to advocate for research that is responsive to community needs.
Authors’ Contributions
M.M.: Conceptualization, methodology, software, formal analysis, investigation, data curation, writing—original draft. A.A.: Conceptualization, methodology, software, formal analysis, investigation, data curation, writing—review and editing. J.L.G.: Conceptualization, methodology, writing—review and editing. J-M.B.: Writing—review and editing. A.B.: Investigation, data curation. K.B.: Writing—review and editing. A.R.: Writing—review and editing. M.G.: Project administration, writing—review and editing. C.F.: Project administration, supervision, funding acquisition, writing—review and editing. D.G.: Conceptualization, methodology, funding acquisition, supervision, writing—review and editing.
Author Disclosures Statement
The authors have no competing interests to declare that are relevant to the content of this article.
Funding Information
Research reported in this article was supported by the Maryland Department of Health.