Using Social Science to Inform and Improve Clinical Trials: Q&A with Dr. Virginia Bond

Dr. Virginia Bond and members of the Zambart social science team

Dr. Virginia “Ginny” Bond is a Social Anthropologist and Associate Professor at the London School of Hygiene & Tropical Medicine. Based in Zambia, she heads the social science unit at Zambart. She is the lead social scientist for PopART (Population Effects of Antiretroviral Therapy to Reduce HIV Transmission) a large community-randomized trial being carried out in 21 communities in South Africa and Zambia. The trial is designed to evaluate the impact of a universal test-and-treat intervention on population-level HIV incidence. Similar to HAI’s Botswana Combination Prevention Project, the goal of PopART is to dramatically reduce the number of new HIV infections.

Martha Henry, Executive Director of HAI, spoke over Skype with Dr. Bond in Zambia.

What is your research process for the social science aspects of PopART?

PopART logoI work with a core team. We have Zambian and South African social scientists who we’ve recruited and done a lot of training with. In the sites where we’re doing interventions, we have local social science research assistants who are residents of that place. When we go to those communities, we work with them.

For example, in Zambia we’ve just introduced immediate treatment irrespective of CD4 count, where previously treatment was only offered according to the CD4 count threshold in the communities where PopART is working. This change reflects new evidence and is in keeping with revised WHO guidelines that recommend ART for everyone living with HIV.

So three weeks ago, I went to one of the sites and worked with the local research assistant. I did the observation for three days of this transition to the offer of immediate treatment to all PLWH (People living with HIV/AIDS). I had a set of activities that we designed together as a team. Others were carrying out the same set of activities in another four of the communities.

We would observe all the places in the clinic where HIV testing and counseling and treatment is carried out. We arrive early in the morning and wait as others wait, listening to opening health education talks, chatting informally to people who queue. Then we did key informant interviews with the first sister in charge [head nurse], with the lab technician, with the pharmacist, and with a community lay worker. We were sitting in the clinician’s room, or in the pharmacist’s room, or in the room where they’re doing adherence health education and observing them delivering that service. We interview people living with HIV who are encouraged to start treatment early. For all the formal interviews, we first get written informed consent.

I make notes while I am there or use the different instruments I have to help, like an observation checklist or set of questions I try to ask everybody waiting for treatment. It’s important to write up your notes soon after the activity, because otherwise you forget.

What is a broad-brush survey and how does that help you understand how people within a community make use of or ignore HIV services?

It’s a set of qualitative participatory activities that are carried out systematically in a number of pre-determined bounded geographical areas. We’re looking at key variables or features that are mainly visible and wanting to compare areas with each other.

Creating a map of the community with the local health committee
Creating a community map with the local health committee

For example, what are the boundaries? What are the physical features? What’s the social organization? What do people say about this place? What kind of identity has it got? What is the history of HIV there? What are people’s current understanding of HIV management and options? And so on. A broad brush survey gives you a very rapid, but also quite shallow sense of the options for people living in these places and what influence that will have on HIV management.

Can you give me an example of how research that you’re doing has changed how PopART operates?

One example from some very recent work is that we got additional funding to offer targeted HIV prevention and treatment interventions specifically for adolescents. To help plan for that, in each of the 21 communities we did two days of observations carried out by skilled social scientists. We observed where within the communities the adolescents hang out, what activities were being offered in relation to HIV, and so on. We approached and interviewed every stakeholder working with adolescents.

We wrote up these observations and stakeholder surveys quickly and we merged that with quantitative data that we have from the intervention data about adolescents: how many of them were agreeing to be tested, how many of them were positive, and how many of those living with HIV were in treatment.

We ended up with short, interdisciplinary, community-narrative reports. On the basis of these reports, the whole team decided what interventions we should introduce for adolescents.

We also sometimes carry out research that responds to events in the field. For example, in one community in Zambia, we were only managing to reach 20% of 10- to 14-year-olds. That’s a striking contrast to most communities, where we were reaching at least 70% of 10- to 14-year olds. So the team asked us, “Why is this happening in this community?”

We looked at what data we already had, and then we did some additional research.

In this case, key influences were a much stronger middle-class presence, which means that quite a lot of 10- to 14-year olds are away at boarding school, and high mobility in a high-density, lower-income area. So as an interdisciplinary team, we helped piece together what was happening. Then, with the team, we thought about what we could do to reach this group.

Are there basic mistakes that researchers make?

The uptake of testing is much lower amongst men, which is an issue. What frustrates me more than people not doing the social research to understand why this might be an issue is when people just make assumptions about why that is.

It’s kind of everybody realizing the limits of their own skills and their disciplines and having enough respect to realize when you should invite other disciplines in.

How can social science help take a wildly ambitious goal like Universal Test and Treat (UTT) and help move it beyond the controlled world of clinical trials and into the messier real world?

By documenting and writing up and communicating what it means in reality.

To give one example, in all of the Zambian and South African communities, very few people were familiar with the concepts of Universal Test and Treat and TasP [Treatment as Prevention] when we first started PopART. Rather than just saying, well, that’s just because they haven’t heard about it, it is understanding that maybe the concept just doesn’t fit. Maybe it doesn’t make sense. Maybe it’s more comfortable to keep treatment and prevention a bit separate.

In the real world, your messages and the science don’t necessarily fit into popular understandings. Often implementation and epidemiology research is focused on uptake and clinical outcomes. Our responsibility is to be focused on the community and what other options are out there. People, particularly in Zambia, but in South Africa too – they’ve got alternative ways of managing HIV, including faith healing and traditional healing.

Why might people opt for something else, rather than the Western biomedical path for managing HIV? I think those are the sorts of issues to keep an eye on.

PopART works in nine communities in South Africa and 12 communities in Zambia. Does it feel like you’re doing a different study in each community?

071sitesNo. It feels like there are enough similarities that it’s the same study in all 21 communities. There is variability between places. Sometimes the difference is quite minimal; sometimes it’s quite striking. The differences, I think, get bigger across countries.

For example, the community lay workers—who they are, how they work—are quite different in both countries. That’s very much shaped by all sorts of things – national history, by the direction and form of community response, by national policies and so on. In South Africa, there is not a long history of Home Based Care programs, whereas in Zambia we have had these in place since the late 1980s. Zambia also has a longer history of counseling. This means that in Zambia the community lay workers who are the face of the UTT intervention tend to be older and have more experience.

How do social and biological scientists work together on a huge project like PopART? How does it all fit together?

Some people really struggle with interdisciplinary work and some people don’t. I think a strong history of good relationships, good teamwork, respect—that all counts. When you have difficulties, it helps you get through them. It fits together because we’re all committed to reducing HIV.

Title Image: Dr. Virginia Bond (far left) with colleagues from the PopART social science team