“I don’t get compensated enough.”
“I am getting compensated in ways I don’t need.”
“We are asked our opinions sometimes, but where do those opinions go?”
“My compensation doesn’t reflect the amount of time and effort I put into my participation.”
“I am asked to do a lot and should be compensated for it.”
The above are common concerns from individuals who serve on Community Advisory Boards (CABs), and Boards that use other names, in the field of HIV research in the United States. Often, board members spend their own resources (e.g., transportation, internet connectivity) to participate in the research process while contributing their expertise as members of the community.
Valuing and paying CAB members—reimbursing them for out-of-pocket expenses, compensating them for time and burdens, and incentivizing participation or involvement—can: 1) increase trust in the research process, 2) move research towards what is considered ‘ethical’ and more accurately reflect the priorities and needs of the community, and 3) instill greater equity, fairness, and transparency.
Trust and trustworthiness of the research process
Properly valuing and paying Community Advisory Board members for their time and contributions in the research process can engender greater trust in the scientific community. Trust is enhanced by balancing power dynamics and valuing differential lived experiences and resources. Community members provide unique expertise in the research process. While they may not be researchers or research participants, they are valuable partners who help protect participants. They must devote time to contribute the knowledge of their communities to researchers. CAB members provide input, review protocols and procedures, and act as a critical sounding board. Their meaningful involvement represents a safeguard in the research process—similar to IRBs.
We believe the word ‘community’ has hindered CAB members because it conceals their true expertise as de facto subject matter experts. This represents the ‘paradox of community’ and has served as an excuse for not giving payments to CAB members. Valuing community members’ time and altruism can go a long way in enhancing basic trustworthiness of research.
Moving research towards what is considered ethical
Fair and equitable payment of Community Advisory Board members can also help operationalize the three Belmont principles established in 1979—beneficence, respect, and justice.
First, payment promotes beneficence by increasing the overall social value of the research. Second, payment helps respect community autonomy and self-governance. Third, payment helps promote justice, or the fair distribution of risks and benefits of research. It also helps operationalize social justice—the view that everyone deserves equal rights and opportunities.
One common argument for not paying CAB members is that money would bias people’s opinions about the proposed research. We believe that not properly valuing CAB members may bias them to think systems of research are unfair and extractive. Providing fair payment to CAB members can help move the research process towards what is considered ethical—beneficent, respectful, and just.
Instilling greater equity, fairness, and transparency in the research process
Involvement in the research process as a Community Advisory Board member takes resources—time being one of the most valuable ones. Structures and networks of research that explicitly forbid payment of CAB members reinforces systems of inequity between scientists and community. Providing payment could help strengthen the symbiotic relationship that should exist between researchers and community.
To instill equity and fairness in the research process, community members should be allowed to decide on a basic support package or package of benefits. This basic package should help support CAB members’ participation (e.g., internet connectivity, transportation) or help cover basic immediate needs during their participation (e.g., food) in exchange for time and effort. CAB members are best qualified to decide on the composition of this package. For example, early career professionals might decide to remain engaged in research because compensation for their time has gone beyond money to include benefits like certificates of completion, professional references, and even resume building workshops that allow them to be more competitive in the job market. We should ask community members what compensation they value. Meaningful compensation may not always be monetary.
Further, we believe payment for CAB members should be included in research budgets, and equitable budgeting for CAB members should be mandated in research grants. In parallel, there should be increased advocacy to remove institutional barriers and streamline payment procedures for CAB members. Frequently, CAB members must contend with unfamiliar and onerous payment and accounting systems requiring complex forms (e.g., W-9, contractor forms). These institutional systems require high levels of literacy and numeracy and are inconsistent with equitable CAB member involvement. Further, reporting payments can possibly jeopardize benefit for some CAB members receiving disability. More innovations are needed to facilitate fair payment of CAB members involved in research (e.g., Venmo, PayPal).
Transparency in payment of CAB members is also important. Research participants are often paid for at least some of their time, but at rates lower to ‘professionals’ even when their expertise and lived experiences are extremely valuable. What is determined as ‘fair payment’ is often determined by individuals with limited understanding of the biases they hold in assigning worth to the contributions of community. We have also noted tremendous variability by institutions. Even universities in the same city can handle the same issues differently around what is coercive versus what is fair to pay. What might it look like to publish standards in line with cost of living and encourage collaborations at the regional and national level on issues of payments for CAB members?
Call towards Critical Equity
We urge funders, study sponsors, researchers, ethicists, research leaders, accountants, and other stakeholders involved in decision-making regarding payments to Community Advisory Board members to view CAB members as experiential experts whose time is valuable and whose contributions to science have long been undervalued. Valuing and paying CAB members can help operationalize trustworthiness, ethics, justice, equity, and fairness in the research process. The notion of CAB member involvement needs to be urgently reconsidered if we aim to work for full and representative inclusion and critical equity.
Dawn Averitt began working in the HIV/AIDS arena in 1993, after being diagnosed with HIV in 1988. In addition to being the mother of 3 daughters, she has founded two non-profit organizations, Women’s Information Service and Exchange (WISE) in 1995 and The Well Project in 2002, to improve the lives of women living with HIV and AIDS. As a social justice advocate for people living with HIV and AIDS, Dawn also launched a think tank in 2003 now called the Women’s Research Initiative on HIV/AIDS (WRI) which drives “more, better, faster” research in women and has been responsible for many notable achievements such as facilitating the GRACE Study, building network collaborations, guiding FDA labeling decisions, and shaping research and policy priorities at the NIH. In the past 25+ years, she has developed programs to increase awareness, accelerate testing, provide access to treatment, disseminate information and expand clinical trials. Dawn has also served as a member of the Perinatal HIV Guidelines Committee from 2007-2012, the Office of AIDS Research Advisory Council (OARAC) from 2008-2012, two terms on the scientific program committee for CROI, as well as served two terms on the President’s Advisory Council on HIV/AIDS (PACHA) from 2010-2015 during the Obama administration.
William B. Carter is the Chair of the Martin Delaney Collaboratory BEAT-HIV Community Engagement Group. He is also an HIV outreach/engagement educator through the University of Pennsylvania. He is father to two adopted sons and grandfather to six beautiful children. He was diagnosed with HIV 20 years ago and finds happiness in helping others and sharing his story through frequent speaking engagements including the CFAR National Meeting, and the CFAR Social and Behavioral Science Research Network (SBSRN) conference to name a few. William also helps to organize clothing drives and has helped nine other men become adoptive parents. William feels that volunteering his time to others makes him a better man and makes him happy.
Karine Dubé is an Assistant Professor at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill, and Visiting Assistant Professor at the University of California San Francisco (UCSF) Center for AIDS Prevention Studies (CAPS). She is a socio-behavioral scientist focused on integrating a patient/participant perspective and community-centered approaches to HIV cure-related research.
Marcia Ellis has been a strong advocate for bridging the gap and strengthening the engagement between community and science in HIV and related research for nearly 20 years. Her advocacy grows out of her lived experience as a long term HIV survivor (35 years) and the knowledge and experiences of others in the DC and global communities. She has been an active member and leader of several HIV research community boards including the DC CFAR Community Partnership Council and served as the DC CFAR Community Coordinator. Other board memberships are the Incentives CAB, the ACTG Global Community Advisory Board, the GWU Prevention CAB, and the VA CAB. She received her Bachelor’s and Master’s degrees at Stanford University in African and African American History and International Development Education, respectively.
Karah Y. Greene graduated from the University of South Florida with a Master's degree in Social Work in December 2021. She joined the USF School of Social Work ACCESS Lab in October 2020 and is passionate about promoting health equity as a social worker and research coordinator. Her research interests include 1) the intersection of gender and health equity, 2) bioethics in clinical research, 3) loneliness and its effects on quality of life, as well as innovative methods to improve social connectedness among older individuals, and 4) integrated mental health support in primary care settings. She aspires to apply for admission to a PhD program in the next year.
Dr. Allysha C. Maragh-Bass is a Scientist I in the Behavioral, Epidemiological, and Clinical Sciences (BECS) Division at FHI 360. She is a Social/Behavioral Scientist, mixed methodologist, and former Scholar with the HIV Prevention Trials Network (HPTN). Dr. Maragh-Bass has 15+ years of research experience in HIV/AIDS, substance use, qualitative, and quantitative methods in clinical and community-based research and programs. She has worked in health care settings from primary care to surgery and across the minority health spectrum with individuals marginalized by race, sexual orientation/gender identity, or disability. With grounding in social determinants, her interest is in addressing health inequities with multidisciplinary, community-partnered and evidence-informed approaches. Since late 2019, Dr. Maragh-Bass began leading both domestic and international efforts in decolonization and global health equity at FHI 360, including trainings with students, internal staff, and technical assistance with government and private funding organizations. In addition to her Scientist I role, Dr. Maragh-Bass is also a highly experienced lecturer and educator, who has held adjunct faculty positions for over a decade. She is currently a Professional Instructor in the Department of Prevention and Community Health at the George Washington Milken Institute of Public Health, and an Adjunct Professor at the Duke Global Health Institute.
Jeff Taylor has been HIV+ for 40 years and first got involved in HIV research advocacy by participating in some of the first AZT trials in the 1980s to get access to HIV medication. Since then, he has served as a community advisor to many research groups—beginning with the UCSD AntiViral Research Center CAB, and (what is now called) the Community Scientific Subcommittee of the AIDS Clinical Trials Group (ACTG). He currently serves on the National Cancer Institute (NCI)'s AIDS Malignancy Consortium’s ANCHOR Study CAB; the community advisory board for the CARE Collaboratory, the Gladstone amfAR Cure Institute CAB, the UCSF DARE CAB, the UC Riverside Clinical IRB, the Eisenhower Medical Center IRB, and on the Clinical Advisory Panel for CIRM-funded trial at City of Hope. He also serves on the AIDS Treatment Activists Coalitions Drug Development Committee which meets regularly with pharma and FDA on HIV drug development issues. Locally, he produces a monthly treatment education series on HIV treatment issues for HIV patients & providers, and is the Director of the Palm Springs HIV & Aging Project to conduct community-based research on aging in HIV.
Thomas J. Villa is a longtime advocate for the LGBT community, an accomplished leader and successful business executive. He has thirty years of success building and leading new teams and new businesses, primarily in healthcare services. In 2017 Tom co-founded Impacto LGBT, a nonprofit community-based organization that serves the LGBT Latino community of Northern Virginia. Tom holds a Bachelor of Science degree in International Relations from Georgetown University’s School of Foreign Service, graduate studies in Health Systems Management (University of Baltimore) and Leadership (Walden University), and is a decorated veteran of the U.S. Army. Tom leverages his experience as a long-term survivor of HIV through service on community advisory boards for the DC Clinical Trials Unit of the ACTG led by George Washington University/Milken School of Public Health and the Whitman-Walker Institute; on the Virginia Community HIV Planning Group; as an Ambassador for the HOPE Martin Delaney Collaboratory for HIV Cure Research; through volunteer participation in various clinical trials focused on ending the HIV epidemic; and as a Convening Member for the National HIV & Aging Advocacy Network.
This is an important topic. I don’t think research organizations realize the extent of out of pocket expenses borne by CAB members on fixed budgets. Having been on four developing protocol teams concurrently, I was purchasing paper and printer ink non-stop. In addition, we receive no compensation for our time. When we meet in person there is dinner, bus/parking passes, but with the escalating cost of gasoline, meetings can become burdensome.
This issue seems to be centered in US research teams. The Canadian HIV Clinical Trials Network developed a community engagement in research platform for all of its teams that clearly incorporates compensation principles for community advisory board members as well as other rules of engagement and training. Here’s the link https://www.hivnet.ubc.ca/knowledge-center/engaging-with-community/ see the section on compensation. The Canadian CIHR funding agency also expects and often requires grant applications to budget for compensated community advisory members in submitted budgets.
Why is this even being debated? We reimburse experts all of the time for their participation in advisory boards. We need to do this for CAB just to be fair, and to ensure those of us who depend on CABs can get the best advice. I know from personal experience that not everyone has the time and resources to volunteer for CABs. If we want to truly engage a diverse collection of voices in this process, and make sure all communities are at the table, we need to invest heavily in the development and maintenance of these CABs. Our CAB was an essential partner in enabling us to work through the COVID pandemic and worked overtime doing so. It was a lot of unpaid and valuable work. This needs to change.
Make paying CAB members a requirement and implement this rule at the federal level (for federally funded research) and also at the IRB level (required for study approval) so studies dont slip through the cracks.