Engaging Communities in HIV Cure Research

Community engagement is key to HIV cure research efforts around the world. By involving local populations in the research process, the findings become more relevant, ultimately leading to more effective solutions.

Udom Likhitwonnawut became involved with the first HIV community advisory board (CAB) in Thailand in 1998 while working for a HIV home-based care program implemented by an international aid agency. Today, he’s a member of the CAB for the Martin Delaney Collaboratories for HIV Cure Research 14C research program, which is developing immunologic strategies for HIV-1 remission and eradication. He shared his thoughts on the challenges and opportunities surrounding engagement in HIV cure research [responses edited and condensed].

 How did you become involved with community engagement for HIV research?
I was asked to join the first HIV in Thailand in 1998 because I was working for a home-based HIV care program implemented by an international aid agency. I was able to communicate directly with an American researcher who helped a research institute in Chiang Mai, a province where I was based.

What are the key priorities or goals of community engagement in HIV research?
At that time, most of the studies we were involved with had already been approved by the IRB [internal review board] of the institute, so we were not involved in the early stages of the studies. Therefore, the key priorities of the first CAB current CABs are providing input for recruitment, for example reviewing and commenting on informed consent forms, study brochures and pamphlets. We help research teams solve any problems that they have during the recruitment or retention phases of the studies.

How do you ensure the voices of all communities impacted by HIV are heard and considered in research design and implementation?
It would be impossible or unrealistic to include community representatives of every group who may be marginalized, therefore community representatives must be responsible and diligently engage all community groups by maintaining open and transparent communication, and by seeking out and encouraging impacted communities to get involved in protocol development. It also means that sufficient supports are available to community representatives to carry out these duties.

Many HIV research networks include community representatives in their scientific committees on protocol development. However, we also need support for community representatives to engage with their communities. CAB members must realize (through regular CAB meetings, CAB orientation, and CAB training) that their roles and responsibilities are not limited to CAB meetings.

How do you build trust with communities that may be hesitant to engage with HIV research?
This is a long process and depends on local context and culture. It can start with being respectful and listening to and learning from community members. We tend to tell or lecture community people and don’t allow them to speak. Honesty is important too.

Often times, researchers don’t want to reveal too much information citing on-going research, or lack of local-specific details. These could be interpreted as hiding something or distrust community members. We should not be afraid of telling them that we don’t know and will find out and give them correct information as soon as it is available (and follow up on that promise).

What are some of the misconceptions you’ve heard about HIV cure research, and how do you address them?
That cure will be possible soon in a few years, or it can be scaled up. And HIV cure research is, “not about me, it won’t benefit me (long-term survivors),” because most studies are about people who acquired HIV recently and have been treated very early.

How to address them: education (presentations on HIV cure from various HIV conferences and annual meetings), one-on-one discussion, and translating HIV research news.