As interest in women’s health research grows, pressing gender data and health equity gaps remain and demand innovative solutions. Enter citizen science—a groundbreaking approach that invites the public to participate actively in scientific studies, thereby aligning research with the needs of society. This collaborative effort not only gathers vast amounts of data but also amplifies the voices of those often underrepresented in (medical) research. And this is exactly what I think various fields of research can benefit from!
For too long, women’s health has been overshadowed by biases that have led to insufficient clinical understanding and often inadequate diagnostic or treatment options. Historical exclusions of women from clinical trials and a lack of attention to gender-specific health concerns have resulted in persistent issues surrounding diagnoses and treatments for various conditions including endometriosis, polycystic ovary syndrome (PCOS), infertility, and more. The result is a healthcare landscape where women frequently feel their health concerns are unheard. A staggering 84% of British women have reported feeling dismissed by healthcare professionals. Yes, read that sentence again, 84%! We can only imagine what the situation might be like in other countries.
So, how can we bridge this gap?
Citizen science offers an effective answer. By harnessing insights and experiences of the public, particularly women, researchers can tailor studies to better reflect the complexities of women’s health. Projects like our international Isala project focus on the female microbiome, allowing women to share their personal health data while simultaneously educating them about their own bodies and the microbes with whom they share their bodies with. Read more about our insights in our recently published perspective in Nature Medicine.
Figure 1: Citizen-science pyramid with an overview of involvement levels of citizens
Through citizen science, a large-scale collection of data becomes feasible, while the public becomes active participants in shaping research questions and study designs. For example, the Isala project rapidly grew from an initial goal of 200 participants to over 6,000 within ten days, showcasing the immense public interest in contributing to vital health research. This collaborative initiative between citizen and scientist does not simply enrich the scientific process; it fosters a community of informed citizens empowered to take charge of their health narratives.
After all, when communities collaborate with scientists, the possibilities are limitless
However, effective citizen science in women’s health is not without its challenges. One pressing concern is participation bias; those most willing to engage often come from more affluent or educated backgrounds, underscoring the need for inclusive outreach strategies. To encourage diversity, citizen-science projects must venture beyond traditional demographic boundaries and address cultural sensitivities, especially regarding intimate health topics that remain stigmatized. This is where meaningful partnerships come into play. By partnering with community organizations and local health practitioners, citizen-science projects can strengthen trust and facilitate conversations around sensitive health issues. Tailored communication strategies ensure that information resonates with various demographic groups, making scientific research and its results accessible to all.
Figure 2: Examples of Isala citizen-science communication material (self-sampling kit, tote bag, infographics, event).
Moreover, successful citizen science initiatives must prioritize ongoing feedback. Participants benefit from receiving personalized results and insights, deepening their engagement and reinforcing a sense of ownership over their health. In the case of the Isala project, participants have received their own microbiome profiles together with broader findings, fostering a deeper understanding of women’s health research.
Ultimately, citizen science holds immense potential to reformulate the narrative around women’s health research, making it not only more inclusive but also significantly more relevant. By involving the community in co-creating health knowledge, we can dismantle longstanding taboos, elevate underrepresented voices, and pave the way for a healthier future for all. Advocating for a more integrated, democratized approach to scientific inquiry could lead us closer to achieving gender equity in health research—creating pathways for change well beyond the lab.
So, what more can I say; let’s harness the collective power of citizen science. After all, when communities collaborate with scientists, the possibilities are limitless.
Read our Perspective paper in Nature Medicine here!
