Living environment instead of green table

Participatory research has been rather unusual in epidemiology to date. In a study on sexual health among Africans in Germany, the Robert Koch Institute is taking up this concept. Christina Laußmann spoke to Claudia Santos-Hövener.

Claudia, you are leading the study from the RKI. You carried out the pilot run in Hamburg together with the local AIDS service organization and successfully completed it last year. What did you want to find out with the study?

Migrants from sub-Saharan Africa account for around 10 to 20 percent of initial HIV diagnoses in Germany. This group makes up a very small proportion of the population and is therefore disproportionately affected. According to HIV reporting data, many of these people only become infected in Germany and are often diagnosed late. There is therefore a clear need for prevention - and the aim of the study is to identify this.

Participatory research - for the first time at the Robert Koch Institute

The study is designed to be participatory. Is this a first at the RKI?

Yes, this has never been done before. Participatory concepts are not yet common in epidemiological research in Germany. And not every epidemiologist is immediately of the opinion that this concept is suitable for our work. Participatory research is usually about needs assessment in the field or intervention planning. In addition, such participatory processes are often more lengthy and time-consuming to prepare and therefore more cost-intensive.

So how did this concept come about?

in 2011, I had planned a workshop with experts from the migration sector to discuss whether there was a need for action with regard to HIV and other sexually transmitted infections among Africans - and if so, how something could be done about it. I was a bit naive and thought that we would sit down together for two days and then perhaps have already developed a study design - but that didn't work out. It was a very critical meeting.

In what way?

In addition to various stakeholders from the field of health and migration, representatives from African communities in Germany were also present at this first meeting. Initially, there was a lot of mistrust from this side and the question of why we, as an official institution, were "suddenly" interested in people from sub-Saharan Africa - which is understandable. So we didn't even get to the point of developing a research design, but first talked about general principles for a possible research process.

"Africans are involved in almost every step of the research"

What principles were involved?

One principle was that the research must benefit the local communities - this can be a monetary benefit, but also a gain in knowledge. Then the research should have a certain sustainability, i.e. create local structures that benefit prevention work. And one thing was very clear: if we do a research project on Africans in Germany, then it has to be participatory.

What does participation mean in your case?

Africans are involved in almost every step of the research and have decision-making authority: in the development, preparation and discussion of the results. Peer researchers, i.e. African community members who have been trained in advance, are responsible for recruiting the study participants. Community members are only not involved in the statistical analyses.

How did you prepare the study?

The development of the study was quite a long process. First of all, we compiled a detailed report on African communities in Germany using data from the Federal Statistical Office and then carried out a comprehensive situation analysis.

Finally, we formed a working group and developed the study design, which took about a year and a half. During this phase, we agreed that we wanted to conduct a pure survey - i.e. not take blood samples to determine prevalences, as is done in other studies at the RKI. Members of the African communities expressly did not want this. However, during the survey in Hamburg, we then pointed out the anonymous and free test offered by the CASA blanca facility in order to refer people who would like to take a test after the survey.

500 questionnaires? No problem for the peer researchers

The pilot study in Hamburg was also there to assess the feasibility of the study design. What criteria did you use to do this, and what was the outcome?

Of course, it was very important how the peer researchers assessed the feasibility - the feedback was generally positive. Another criterion was how diverse the group was that we reached. That worked out well: studies like this tend to reach people with a higher level of education, but we also had a large proportion who reported having a primary or lower secondary school leaving certificate or no school leaving certificate at all. In terms of countries of origin, the large African communities in Hamburg were represented. However, we also learned that it is important how you select the peer researchers - they also have to be diverse. Another criterion was that enough questionnaires were returned, and that also went very well.

Over 600 questionnaires were returned.

we received 649 questionnaires, a few of which we had to exclude from the analysis. That was more than we had expected, which we owe to the motivated peer researchers. Sure, they were paid for every completed questionnaire, but that wasn't the only reason. They were really into it and enthusiastic right from the start! I said at the beginning that we needed at least 350 questionnaires, but 500 would be great. The peer researchers said straight away: we can manage 500!

Some of the details you asked were quite intimate. Did that cause problems for the peer researchers during recruitment?

The most intimate questions were probably about sexual practices. Nevertheless, the answers in this part were relatively complete. People knew from the outset that this study was about sexual health. And what is perceived as intimate varies. In some cases, the demographic information was also perceived as too sensitive, perhaps some were afraid of being identified.

The topic of hepatitis is a good door opener for questions about HIV

What are the most important results of the study?

Of course, the results only speak for the city of Hamburg. We can definitely say that there is a need for prevention with regard to hepatitis. We formulated the questions as true statements and asked whether the participants already knew this information. This had a certain learning effect. People didn't know that much about hepatitis, less than 40 percent of respondents had heard the information before - and we didn't think that was much. If you were to ask someone without a migration background, it would perhaps be similar, but with Africans it is something else again, because many African countries are high prevalence countries in terms of hepatitis B and also C.

However, it has been shown, and this has also been confirmed by the peer researchers, that the hepatitis questions are a good door opener for subsequently addressing HIV. Hepatitis is not so strongly associated with sex and is therefore not so stigmatized. This is information that can be helpful for prevention.

What was the situation with the HIV questions?

People knew a lot about general questions about HIV. However, there were two statements that relatively many people did not know: that you can be tested for HIV anonymously and free of charge in Hamburg and that HIV is not a reason for deportation. These are messages that need to be communicated. And neither of them are particularly sensitive, they are easy to talk about.

What is also interesting is that the amount of time respondents had been in Germany was not important for their knowledge of HIV, but the level of German language skills was. People who answered "moderate", "little" or "not at all" to this question had a greater need for information.

You also asked about female genital mutilation. How can the information on this be incorporated into prevention in this country?

28 percent of women reported having undergone FGM. However, we did not ask where this was carried out. Genital mutilation is a risk factor for HIV infection even after the actual procedure. If lesions or adhesions remain, the risk of HIV is also increased. It is therefore important to talk to women about this and inform them about the risk.

How do you take the results back to the communities?

This is mainly done by our colleagues in Hamburg, but of course we support them. For example, we are helping to create a flyer that presents the most important results in an understandable way and that various institutions and stakeholders can use for their work. As the RKI, we also publish at various levels. And of course there is a detailed report, which every peer researcher also receives and which is available on our website.

"As a researcher, you don't get this connection to the real world otherwise"

Have synergy effects resulted from the joint research work?

Yes, because we really tried to involve many different stakeholders and, for example, also visited HIV specialist practices and refugee facilities. You can really see that this involvement has led to more intensive networking. And this network is of course important when it comes to planning interventions.

What are the next steps in the study?

Five more centers are to follow in the next two years. It will start in Munich at the end of January. We will then start in the Rhine-Ruhr region in the middle of the year, which is a major logistical challenge for us. We want to survey over 3,000 people in total.

Are further participatory studies at the RKI conceivable?

I do believe that the RKI will incorporate more and more participatory methods into its work in the future. Of course, this is not always possible, but it can be very helpful to have someone from the "target group" involved when designing the study and interpreting the results, so that these people can tell you whether what you might be thinking as a scientist makes sense at all. For me, it was an enormous enrichment - as a researcher, you don't otherwise get this connection to the real world. And if someone tells me, no, Claudia, that's not how it works, then that's great! That's the only way to achieve results that really help everyone.

Thank you very much for the interview!

Further information:

"Research at eye level", interview on magazin.hiv with Mara Wiebe and Hapsatou Oudini from AIDS-Hilfe Hamburg, who coordinated the pilot study on site

Reports and further materials on the study on the website of the Robert Koch Institute