Week 5 - Rakai Community Cohort Studies

Our trip to Rakai has been one of my favorite experiences here in Uganda. I found the Rakai Community Cohort Studies (RCCS) truly inspirational. The project at Rakai not only studies the prevalence and incidence of HIV/AIDS (and other health issues), but it also provides services to all of the community members in the study district.

Let me first state that RCCS involves around 12,000 participants. Now, these 12,000 participants aren't members of a single community; they are people living in several rural communities throughout the Rakai district. Keeping track of all of these people becomes a bit of trouble in any research study but especially so in a large, rural region. The researchers have to deal with people moving in and out of the communities, not showing up to the community hubs for their follow-up appointments, and impersonating study participants. To deal with these issues, the RCCS has come up with a means of tracking participants that involves catalogued photographs and home visits.

We were lucky enough to visit two of the community hubs where the research interviews are conducted and services are provided to community members. The hubs move between communities in the district, staying in each for a couple weeks before moving on to the next site. Several tents are set up at the site including one for waiting, one for testing, and several small ones for individual interviews. I was astonished by the level of organization and efficiency with which the researchers operated. I have never really seen a large research project in action in the United States and certainly have never seen research that operates at the level of the RCCS.

I think one of the most striking aspects of the research in Rakai was the dedication to the provision of services to people in the study communities. This was a topic that was emphasized heavily in our lectures. The researchers in Rakai understood the need to maintain the trust of the study community. This trust was sustained through involving the community in the design and implementation of the study, keeping cultural issues in mind, and giving back to the community in ways that exceed the parameters of the original studies. Although the researchers in Rakai cannot afford to treat everyone in the district, they have set up a great referral system and are able to provide basic treatment to some members in the community.

Ultimately, the Rakai Community Cohort Studies are research, but this project has managed to be more than just that. The researchers have gone above and beyond the call of their studies to give back to the communities. Giving back to participants and the community is not always easy, and I feel like the studies in Rakai can be used as a great model for how research should really be done.

Location: Rakai, Uganda