Participating in the Isala project: Poverty as a silent opponent?

The Isala team is very grateful for the thousands of Isala women that participated in the first research phase. But did you ever wonder what this group looked like? When I started my Master’s degree in Sociology at the University of Antwerp, I got the opportunity to choose a Master’s thesis from a wide range of topics. I realized very quickly that one topic really stood out: ‘inclusive citizen science’, using the Isala project as a case study.

Citizen science is becoming increasingly popular (so make sure to read Sarah’s blogpost to be up to date on this). But why is this the case? Well, because citizens play an active role and collaborate with scientists, which often results in valuable findings (look at Isala). In addition, citizen science offers other advantages: it leads to novel knowledge, it strengthens trust between scientists and the general public, and makes effective use of social and cultural capital. In short, the Isala project is a wonderful example of citizen science! The Isala team took advantage of this approach to map the vaginal microbiome of Flemish women, which plays a central role for their health and reproduction. I can already reveal that I really enjoyed diving into the great wealth of Isala data. 🙂

As clearly stated in the first major Isala article, 6007 women subscribed for the first Isala research phase. Mainly highly educated white women participated. Of the 4682 participants that filled out the extensive questionnaire, 164 women appeared to live in poverty, of which 106 had a higher diploma. Within this large cohort of Isala participants, this distribution is therefore not very representative. That’s why women who live in monetary poverty got a central role in my thesis research. This means that their household income falls below the poverty threshold, which was set at 1293 euros/month for a single person. Diversity is extremely important in a project like Isala. One of the reasons are differences between vaginal microbiomes, as emphasized in the Isala sisterhood blogpost. In addition, my fellow student Laura was focusing on women of Moroccan or Turkish migration background in Flanders with her thesis research and thus helped in paving the way for inclusive science communication.

One of the crucial questions for my thesis research was the following: How can we involve women in poverty more in a citizen-science project like Isala? First, we need to understand why women do (not) take the step to participate. I immediately took off by conducting semi-structured in-depth interviews with ten women in Antwerp. In more detail, I prepared a list of questions that I definitely wanted to ask during the conversation. All of the conversations took place in person. The women themselves could choose a location where they felt most comfortable. Although most women invited me to their homes, some of them introduced me to the social café in their neighborhood.

Barriers to participation in citizen science

It turned out that barriers to participation are linked to awareness, personal situation and motivation. The barriers themselves include time investment, financial implications, lack of trust, technological uncertainty and stigma. Some observations are listed here in more detail:

  • Many interviewed women make little use of social media, even though the research is often distributed and promoted through these channels.
  • The use of a laptop creates uncertainty, because women often do not have one available.
  • They want to have the choice whether or not to make any financial costs, such as purchasing resealable bags for samples.
  • Most interviewed women are poorly educated, which means that they often have less knowledge of the scientific research process (‘behind the scenes’), which reduces their interest in participation.
  • Stigma surrounding poverty means that these women in poverty don’t like to be linked to other people in the same financial situation.

How can we facilitate participation?

Luckily, we can take many actions to reduce these barriers or thresholds. We also call these ‘facilitators’, to use a fancy term, and I would like to give an overview of those facilitators here. 🙂

  • To lower the barrier to participation, transparent, accessible and personal communication is necessary. This can be achieved, for example, through an assigned contact person (such as an Isala researcher or a doctor) who can help build trust and encourage the sharing of sensitive information. Ideally, a face-to-face contact moment is foreseen, preferably 1 on 1, during which the researchers discuss the project and introduce themselves to the participants. In addition, a location is preferably chosen where the respondent does not have to incur travel costs. The respondents can make a suggestion themselves, or options can be explored with local organizations.
  • Every effort needs to be made to ensure comprehensible and clear communication, without jargon. If some specific terms are used, they should be explained as clearly as possible.
  • The studied women prefer several short moments to complete questionnaires. This makes it easier for them to schedule them.
  • Clarity about financial costs is very important, but also where and/or who this money goes to. If test material (such as resealable bags, envelopes, stamps, etc.) will be used in the project, it is ideally delivered to the participants, so that they do not have to make those costs themselves.
  • Since not all technologies are readily available to everyone, this sometimes entails some uncertainty as to how certain applications should be used. It is therefore recommended to provide clear manuals. Moreover, the contact person can also provide further explanations on matters that remain unclear.

It quickly became clear that we could learn a lot from this useful Master’s thesis. The Isala team is therefore very much looking forward to including these insights in further research and new sister, daughter and side projects. 🙂