ICAP in Malawi is preparing to launch biobehavioral surveys among four key populations. In a novel approach, the survey team is engaging a newly established Community Advisory Board (CAB) of key population members to gain vital insight into all survey activities and to demonstrate commitment to incorporating direction from these overlooked communities in survey implementation.
The Malawi biobehavioral survey, supported by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) through the U.S. Centers for Control and Prevention (CDC), will assess HIV, syphilis, and Hepatitis B prevalence, as well as HIV viral load suppression among key population members. Key populations, specifically men who have sex with men (MSM), transgender women (TGW), female sex workers (FSW), and people who inject drugs (PWID), will be reached in the northern, central, and southern regions of the country. Aiming to reach nearly 6,000 people, the surveys will be the first to assess progress toward the UNAIDS 95-95-95 targets among these four populations in the three regions and the first biobehavioral surveys in Malawi among PWID and TGW. In addition to the surveys, the teams will also be conducting Population Size Estimation (PSE) to determine the population size of these key population groups in major urban areas and districts.
In Malawi, stigma and discrimination create barriers for many key populations to safely access health services. To ensure that the surveys consider the unique experiences of key populations, as well as to gain trust within the communities the surveys aim to reach, ICAP, in close partnership with the National AIDS Commission (NAC), formed the CAB, the first of its kind established for a government-led survey in Malawi.
“The National AIDS Commission is to be applauded for their foresight in establishing a CAB to ensure close collaboration with key population community members,” said Neena Philip, principal investigator from ICAP. “We at ICAP are excited for this opportunity to learn from the CAB how to design our surveys so that they are responsive to community interests and concerns and can best earn the trust of local key population members.”
Made up of 15 people, all of whom are influential key population members from key population-serving organizations, the CAB meets regularly to discuss how targets can be reached and dissemination of results can be effective. Members of the CAB provide insight on acceptable locations to meet and interview survey participants, advice on appropriate questions and phrasing to be used by surveyors in local communities, and any concerns about survey implementation, such as privacy and confidentiality. The CAB will be a resource for reviewing and interpreting the survey findings and for developing recommendations for improved health services for key populations throughout the country.
For many members of the CAB, creating this group is an important step toward community-building, understanding, and empowerment.
“My involvement in the advisory board will help build trust within the community of people who inject drugs,” said one CAB member. “I will serve as a tool to encourage my friends who will be more willing to participate, as they can see that their voices are being heard and respected.”
“As a member, I feel that the survey is giving value to me and my fellow female sex workers, as myself and my fellow friends have an opportunity to contribute to the survey planning, a thing which is new,” said another CAB member. “For all the research that I have participated in, I just respond to questions, it ends there…Being part of a community advisory board empowers. I feel that I have a role to advocate for the survey participation among my community.”
Biobehavioral surveys provide population-level estimates of health outcomes, and often use respondent-driven sampling, a systematic recruitment method driven through peer network referrals. Since 2013, ICAP has supported 40 population size estimations and/or biobehavioral surveys among these four key populations across eight countries in Africa, Asia, and Central and South America. Each survey involves administration of a population-tailored questionnaire as well as collection and analysis of biological samples to ascertain population-specific prevalences of infectious diseases.
“The CAB, being composed of members of the targeted key population community, acts like a go-between for the survey team and the community,” said Chimwemwe Mablekisi, a principal investigator for NAC. “It would ensure the community understands the study goals, objectives, and desired outcomes of the surveys, and encourages participation, bringing to the attention of the survey team any concerns from the community…The interaction of the survey team and the CAB will eventually ensure implementation of the biobehavioral surveys are efficient, acceptable, and ethically sound.”
The surveys will provide the Ministry of Health with information around what regions and communities are most at risk for HIV, syphilis, and hepatitis B. Findings will also elucidate the uptake of health and other services among key population members and their experiences with stigma and discrimination in accessing health services and within communities overall. With the surveys projected to begin in the latter part of 2023, results will be disseminated back to the key population communities through the direction of the CAB.
“It’s very important that we engage key populations in designing this survey because many of the behaviors of these groups are discreet,” said Lyson Tenthani, project director of ICAP in Malawi. “For the survey to reach as many communities as possible and deliver accurate results, we need to involve social networks. This is why the CAB is so essential.”
“For me as a male sex worker,” a CAB member added, “I feel it’s an honor to be part of the group providing advice to the surveys. It has never happened in life…This is an opportunity for the voices of men who have sex with men to be heard.”
A major global health organization that has been improving public health in countries around the world for 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 40 countries, 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. Online at icap.columbia.edu