Background

When we began, the COVID-19 pandemic had laid bare structural inequities making racial, ethnic, sexual, and gender-minoritized communities more vulnerable to severe illness and death (Ward, Reference Ward2023a). Yet, media narratives laid the blame on these communities, dubbing them ‘vaccine-hesitant’, despite overwhelming evidence that, for instance, Asian, Hispanic, and Native Americans had higher vaccination rates than White populations (Chowkwanyun and Reed, Reference Chowkwanyun and Reed2020; Satcher Health Leadership Institute, 2021). Meanwhile, the ongoing HIV pandemic continued to disproportionately affect these same communities, illuminating the role poverty and disparate access to healthcare and quality housing play in poor health outcomes (Grey, Reference Grey2021). These structural inequities are exacerbated by generational trauma, medical mistrust, racism, homophobia, transphobia, and ongoing discrimination contributing to misinformation, fear, and stigma around the prevention, spread, and treatment of both viruses (Kendi, Reference Kendi2020). Meanwhile, we witnessed a sole focus on COVID-19 prevention contributing to less attention to HIV prevention.

Thus, we created the ‘Two in One: HIV + COVID-19 Screening and Testing Model’ to improve PCPs’ capacity to routinize HIV, pre-exposure prophylaxis and post-exposure prophylaxis (PrEP/PEP), and COVID-19 vaccine screenings for all their patients while relying on culturally responsive communication with their minoritized patients (Ward, Reference Ward2023b). PCPs must be adequately prepared to address the ongoing threats to racial and health equity ( Healthy People 2030, no date), yet many are not (Hoover et al., Reference Hoover, Huang, Tanner, Zhu, Gathua, Pitasi, DiNenno, Nair and Delaney2020). For instance, despite the 2006 CDC recommendation for opt-out HIV testing for those between the ages of 13 and 64 (Centers for Disease Control and Prevention, 2022), many PCPs continue to test sporadically and only based on perceived risk, even while testing in community health centers and emergency departments remains on the rise (Hoover et al., Reference Hoover, Huang, Tanner, Zhu, Gathua, Pitasi, DiNenno, Nair and Delaney2020).

To approach our monumental task – researching the experiences of minoritized patients with COVID-19 and HIV primary care, developing nine national webinar training based on this research, and creating a permanent online course offering Continuing Medical Education credit – we decided to create a NAB. We looked to the literature on advisory boards but found few scholars publishing on this critical part of the research process: most were drawn from local communities rather than a national one, and none of it was in primary care research. The literature we did find, however, argued for the important role of advisory boards. The types ranged from community advisory boards, Scientific Advisory Boards, and Scientific Advisory Committees to Expert Advisory Boards (we refer throughout to ‘NABs’). For instance, Courtney and colleagues call advisory boards a ‘critical instrument of governance’ (Courtney et al., Reference Courtney, Hartley, Rosswurm, LeBlanc and Lund2021: p.254). They provide the expertise of experience, both positive and negative, and can be used to leverage the cooperation of the community involved. They are also ideal problem-solving tools because there are no predetermined formal procedures constraining them, its members can focus directly and solely on the issues they were created to address (Reiter, Reference Reiter2003).

Yet, advisory boards are not guaranteed to be successful. They must be deliberately structured and its members need support. Rapattoni (Reference Rapattoni2008) noted the importance of frequent meetings to maintain retention, of creating a safe environment in meetings where members can speak freely without criticism, and of holding members accountable to the project’s aims to ensure the board’s integrity that it is also important for NAB members to be engaged in some of the work of the project to increase a sense of buy-in. Further, in order to best support the project, board members need training regarding their specific functions on the board (Ripley, Cummings, and Lockett, Reference Ripley, Cummings and Lockett2012).

Hoffman and colleagues offer a framework to generate successful boards (and, in turn, successful projects) that involves 6 stages: (1) Initial establishment, (2) Member selection, (3) Advice Generation, (4) Advice Delivery, (5) Advice Implementation, and (6) Monitoring and Evaluation, providing guidelines and clear determinants of effectiveness for each of these stages (Hoffman et al., Reference Hoffman, Ottersen, Tejpar, Baral and Fafard2018). Additionally, Courtney and colleagues provide critical suggestions for engaging NAB members (Courtney et al., Reference Courtney, Hartley, Rosswurm, LeBlanc and Lund2021). The purpose of this Short Report is to demonstrate how our application of Hoffman et al.’s and Courtney et al.’s approaches strengthened our work and the implications this has for others doing research in primary care.

Approach

We followed Hoffman and colleagues’ framework through each of the six stages as we developed, worked with, and evaluated our NAB. First, to establish the committee, the core research team consisting of the primary investigator (PI) and all co-investigators (Co-I’s) met to talk about project needs and challenges. This group determined that we needed expertise in the following areas: HIV and COVID-19 patient populations, primary care, HBCU pipeline programs, minoritized populations, racial/health equity, and student/trainee populations. Moreover, we wanted lived expertise from these communities of interest. Based on our required areas of expertise, we sent invitations for participation in the NAB to health professionals across the United States.

Second, after reaching out to 29 potential members, we selected our NAB. The final board was established with 11 participating members, composed of one gender non-conforming person, five women, and five men with expertise across our desired areas. Per Hoffman et al. ’s suggestion, we took a democratic approach to committee selection (the core team decided on membership together) and carefully managed conflict of interest (eg, some board members turned down the honorarium since they were part of the federal government).

Third, we began the process of generating advice. The NAB met five times across the grant period (see Table 1), each session strategically scheduled at a key juncture in the project when the core team needed advice. As Hoffman et al. suggest, we offered clear guidance for making decisions. We sent introductory emails out with expectations for the board (eg, attending all meetings, and brief meeting preparation in some cases). Further, we had structured agendas for each meeting and shared minutes of meetings with all members. Cognizant of our NAB members’ limited time, we presented project updates in easily accessible and brief presentations, only focusing on the evidence they would need to make the decisions we were asking for at that point in the grant. Rather than a formal vote, we asked each NAB member to weigh in separately, as consensus methods can stifle some voices.

Table 1. National advisory board meeting structure and advice application across 18-month Two in One project

Fourth, advice about our trainings was delivered through the NAB meetings themselves, which were recorded and transcribed. This gave team members access not only to members’ opinions and decisions but to the dialogic process that they used to reach them. Further, the PI communicated regularly with NAB board members over email and, when requested, individual meetings. These emails and meetings not only offered further clarification of member positions but were also opportunities for them to share resources (eg, literature, similar programs, contacts in the field), for the PI to build relationships, and to develop writing partnerships. All data (recordings, transcriptions, and emails) were kept private and were only accessible by the PIs, Co-I’s, and the research assistants.

Fifth, advice implementation was dialogic and emergent. Since team members were often weighing different opinions and resources, the team used its weekly meetings to debrief and discuss NAB advice and team impressions of its utility, feasibility, and importance. Implementation proceeded in an emergent fashion: after applying each piece of advice in the research or trainings, the team discussed its success and next steps for building on the results, often bringing back other NAB advice to take a different approach.

Sixth, we monitored the work of the NAB across the 18-month project, seeking both NAB and core team members’ experiences of the work and how it could be improved. We report on the methods and results of this evaluation below.

Finally, following Courtney and colleagues, we attempted throughout the process to engage NAB members in the work of the project. We partnered with them on writing policy, research, and commentary pieces and co-presented with them at conferences.

Evaluation methods

To evaluate the effectiveness of the approach above (after receiving an IRB ‘exempt’ status), we gathered metrics on engagement throughout the program period such as the number of NAB members who attended meetings, contributed to publications, and co-authored presentations. We also anonymously surveyed NAB members about their experiences at the project midpoint, and gathered focus group feedback at the end. The electronic survey included nine Likert-scale items that cut across four areas including advice generation, monitoring and evaluation, initial establishment, and advice delivery. The focus group took place as breakouts during a virtual meeting and included four open-ended questions such as, ‘What was the most meaningful way you felt you contributed to our success?’ We analyzed the survey using descriptive statistics and analyzed the focus groups relying on themes.