Dr Jacqui Stevenson
As a researcher focused on HIV and women, I have very often heard the claim that it is ‘difficult’ to recruit women to research, or that women are ‘hard to reach’. It is my experience that this simply is not true. I have carried out research in different countries, on different topics and with different groups of women, and have consistently found that women are interested in and motivated to participate in research. In the WISE UP+ workshop that co-developed the #WeAreStillHere campaign, women taking part talked about wanting to be involved in research – if that research recognised the value of their contributions, explored topics and questions that felt relevant to their lives, and reported women’s experiences.
In my PhD research, I interviewed stakeholders including women living with HIV, researchers, advocates and clinicians. Many of these stakeholders talked about the lack of research into women’s experiences of ageing with HIV, and the under-representation of women in research on ageing and HIV. Clinical research is often predominantly carried out in groups of men, leaving clinicians with limited information to inform the best care and treatment of women ageing with HIV. Social research is also often unrepresentative.
The stakeholders I spoke to agreed that under-representation of women was a problem. One suggested it was due to a lack of priority given to women’s experiences, while others highlighted that research on women and HIV disproportionately focuses on pregnancy, side-lining other issues and experiences (as found by our Invisible No Longer study).
Recruitment of women into studies was also seen as a barrier to representation, but the reasons for this were disputed. I spoke to two HIV consultants who were also involved in research. One, who recently recruited hundreds of women into a study, said she felt that: “women definitely want to be involved in research, you just have to create a study that’s meaningful and think about how you’re recruiting women and make your study accessible.” She felt the real barriers were cultural and institutional, based in “a real corrosive perception amongst clinicians and academics that women are hard to recruit.”
What does that perception look like in practice? The second consultant I spoke to told me that women simply are harder to recruit. He warned the research nurses he worked with that women would be hard to recruit, and this turned out to be the case. When asked about under-representation of women in research, he responded:
“That’s their own fault. I have absolutely no sympathy these days because I’ve spent 30 years trying to get women into clinical trials. If they’re not in clinical trials how the hell can we get information? So the fact we have to beg, plead, you know, even for questionnaires… Now I’m sorry, that’s, don’t come back whinging to me that there’s no information.”
What is the difference between these two consultants’ experiences? I think it is an issue of perception and of priority. If your approach is not working to engage participants from any specific group, you need to change that approach, not blame them for it.
There are simple steps that can be taken to better include women in research, including meaningfully involving women in the research design, data collection and analysis, providing support for childcare and other care responsibilities, and ensuring all participants are supported throughout the study and informed of the outcomes afterwards.
The #WeAreStillHere campaign is challenging everyone involved in research to recognise that women do want to be involved in research. The barriers to their involvement are not intrinsic or unavoidable but placed in their way, by systems that don’t work for women, studies that don’t speak to their priorities, and researchers who don’t prioritise their involvement. Assuming women will be hard to recruit becomes an easy excuse for failing to recruit them. We are challenging researchers to consider whether they have taken all the steps they can to ensure women are able to participate and supported to do so. We are not “whinging”. We are demanding equity. We won’t stop until we get there.