“I used to think that simply knowing, then telling people what’s ‘good’ for them was enough – talk to a client, create a care plan, follow up, wipe hands clean, and done,” said Brandon “POOH” Lee, a community health worker. “But as we were reminded during the ongoing pandemic, while you can have all the science or facts backing you, if the public says they don’t want it, they don’t want it. I don’t want to be in a place in the future where I lack the insight or empathy to be able to help those in need.”
Lee is a Community Advisory Board (CAB) member for ICAP’s Clinical Trials Unit (CTU), a team that aims to support the design and implementation of research to address gaps in clinical trials, including for such areas as HIV prevention and COVID-19. While ICAP’s Bronx and Harlem Prevention Centers are both Clinical Research Sites (CRS) that help make up the CTU, the CAB serves as an advocacy body that facilitates dialogue between CRS research teams and local study communities, ultimately helping to make research more responsive to community contexts. CAB members include representatives of study populations, community-based organizations, advocacy groups, as well as community opinion leaders.
Founded just over a year ago, CRS staff agree that the CAB isn’t a box to check off on a list of quotas – it’s a vital space for mutual learning and sharing.
Once a month, the CAB meets to discuss new topics and participate in presentations relevant to study areas. The advisory group assists CTU staff in identifying and addressing disparities in literacy, education, and economic resources between researchers and local communities, as well as advocates for inclusion, diversity, and equity in recruitment, enrollment, and implementation of study protocols, and dissemination of results.
Logan Posey, community educator at the Bronx Prevention Center, said the CAB was particularly helpful informing the Bronx Prevention Center’s recent Making PrEP Smart study, which explored the acceptability of an app designed to support adherence to pre-exposure prophylaxis (PrEP) and promote HIV self-testing and partner-testing among both cis- and Transgender women.
“I’ve really leaned on our CAB to help our research team create a safe space for Trans women, a group that historically has been underserved and overlooked in clinical spaces,” Posey said. “These conversations with the CAB help illuminate understanding around the anxiety and fear that might come up when it comes to clinical spaces and mistrust in medicine. We have learned about many of those barriers through CAB conversations and it has impacted how we even physically create our workspace, and how we want to ensure it feels safe, welcoming, and representative of many experiences.”
Shakir Edwards, community outreach assistant at the Bronx Prevention Center, added, “In recruiting for the Making PrEP Smart study, we wanted to make sure that we protected identities, so we couldn’t necessarily do table outreach to line up participants. We learned through the CAB just how important that protection of identity really is and that there must be tailored ways that we reach out to different populations based on this need.”
The clinical research sites use a variety of platforms and strategies to recruit study participants, including social media, community outreach events, Columbia’s RecruitMe platform, study sponsor databases, partnering with LGBTQIA community-based organizations, and participant referrals.
For one of the Harlem Prevention Center’s currently-enrolling studies, HPTN 091, which is exclusively recruiting women of Trans experience, the CAB continues to provide vital input for fostering safe, inclusive recruitment.
“We’ve increased LGBTQIA staff training programs,” said Nora Howell, senior outreach representative, “incorporated gender neutrality into our communication and site operations, improved mindfulness about eligibility requirement discussions in public spaces, and increased conversations with community members of Trans experience, a few of which currently hold a seat on our CTU CAB.”
Represented in the CAB are community members involved in LGBTQIA spaces, HIV and AIDS services, Black health spaces, community health care groups, and faith leadership. Important to the CTU is that the advisory board embodies a diverse group of team members who can speak to a variety of needs in different communities. With their input, the clinical research sites develop more informed research questions aimed at understanding community needs and challenges. This relationship, both clinical research site staff and CAB members said, is symbiotic.
“Being a part of the CAB helps keep me in the know,” added Lee, “and not just on current studies, medications, procedures, and demographics. I stay informed on what’s affecting community members, what is at the forefront of their minds, what’s important to focus on for their well-being and the wellbeing of the people close to them.”
Marlow Logan White, another CAB member as well as founder and executive director of Trans Harlem Soul to Soul Community Farm Stand, said, “I joined the CAB due to my many years of experience working in communities affected by HIV. I also wanted to make sure Black folks of Trans experience were represented and to offer my expertise and experience. The CAB gives me opportunities to receive new and first-hand information on HIV research and I also get to meet folks and network, along with build community and share information with community members.”
The COVID-19 pandemic brought to the surface a problem many communities were already all too familiar with: resources often do not reach everyone nor do they reach everyone equally. In fact, an ICAP-supported study found that the LGBTQIA community in New York City was more likely to experience increased financial and emotional challenges due to the COVID-19 pandemic than other adult populations. Gender, racial, and ethnic minorities suffered more job losses and eviction threats than cisgender and non-Hispanic white and Asian participants, and troublingly, more than half of the participants screened positive for likely ongoing depression.
Initiatives such as the CTU CAB help ICAP’s clinical research sites build stronger relationships with the communities they serve so that research can remain informed of these types of disparities.
A major global health organization that has been improving public health in countries around the world for nearly two decades, ICAP works to transform the health of populations through innovation, science, and global collaboration. Based at Columbia Mailman School of Public Health, ICAP has projects in more than 30 countries and is working side-by-side with ministries of health and local governmental, non-governmental, academic, and community partners to confront some of the world’s greatest health challenges. Through evidence-informed programs, meaningful research, tailored technical assistance, effective training and education programs, and rigorous surveillance to measure and evaluate the impact of public health interventions, ICAP aims to realize a global vision of healthy people, empowered communities, and thriving societies.