Citizen science as an instrument for women’s health research

Abstract

Women’s health research is receiving increasing attention globally, but considerable knowledge gaps remain. Across many fields of research, active involvement of citizens in science has emerged as a promising strategy to help align scientific research with societal needs. Citizen science offers researchers the opportunity for large-scale sampling and data acquisition while engaging the public in a co-creative approach that solicits their input on study aims, research design, data gathering and analysis. Here, we argue that citizen science has the potential to generate new data and insights that advance women’s health. Based on our experience with the international Isala project, which used a citizen-science approach to study the female microbiome and its influence on health, we address key challenges and lessons for generating a holistic, community-centered approach to women’s health research. We advocate for interdisciplinary collaborations to fully leverage citizen science in women’s health toward a more inclusive research landscape that amplifies underrepresented voices, challenges taboos around intimate health topics and prioritizes women’s involvement in shaping health research agendas.

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**Fig. 1: The citizen science pyramid.**

**Fig. 2: Isala citizen-science project conduct.**

**Fig. 3: Communicating study results to participants.**

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Acknowledgements

We foremost thank all Isala volunteers and citizens who co-created our citizen-science project. The entire Isala team (S. Condori, T. Gehrmann, S. Wittouck, I. Erreygers, J. Dillen, L. Vander Donck, I. Rahou, C. Dricot, M. Victor, M. Pinedo Bardales, K. Michiels, M. Sillen, I. De Boeck, I. Tuyaerts, N. Van de Vliet, C. Allonsius, A. Groenwals, M. Ticlla Ccenhua, J. Kenfrack) and students were instrumental for science communication, the sampling campaign and processing. Strategic support was provided by the Isala advisory board: L. Talboom and L. Haesevoets (Studio Maria), C. Varszegi (Little Big Things), R. Broms and S. Vergauwen (Sensoa), E. Den Hond and C. Franken (Provinciaal Instituut voor Hygiëne Antwerpen), C. Masquillier, L. Van Dyck, C. De Backer and K. Poels (Communication Sciences, University of Antwerp), N. Van Eekert (Sociology, UAntwerpen) and G. Donders (Gynecology expertise; UAntwerp, University Hospital Antwerp and Femicare). For funding, we acknowledge the European Research Council (starting grant Lacto-Be 852600 to S.L., with S.A. appointed on the project), the Special Research Fund of the Universiteit Antwerpen (UA BOF; DOCPRO 37054 grant to S.A.), the Research Foundation—Flanders (FWO; research projects G049022N to S.L., FWO ODYSSEUS research project 3H140131 to I.V.H. and FWO WOG W000419N to I.V.H.).

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Laboratory of Applied Microbiology and Biotechnology, Department of Bioscience Engineering, University of Antwerp, Antwerp, Belgium

Sarah Ahannach & Sarah Lebeer
U-MaMi Centre of Excellence, University of Antwerp, Antwerp, Belgium

Sarah Ahannach, Veronique Verhoeven & Sarah Lebeer
Life Sciences and Society Lab, Centre for Sociological Research, KU Leuven, Leuven, Belgium

Ine Van Hoyweghen
Department of Family Medicine and Population Health, University of Antwerp, Antwerp, Belgium

Veronique Verhoeven

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S.L. is a voluntary academic board member of the International Scientific Association on Probiotics and Prebiotics (https://isappscience.org), a cofounder of Yun and a scientific advisor for Freya Biosciences. She declares research funding from Yun, BioOrg, Puratos, DSM and Lesaffre–Gnosis. None of these organizations or companies were involved in the design, communication or data analysis of the Isala study, which was the inspiration for this Perspective. This work is fully funded by university, governmental and European funding, with the largest part funded by the European Research Council StG project Lacto-Be. S.A. is a voluntary academic board member of the International Scientific Association on Probiotics and Prebiotics, Students and Fellows Association (https://www.isapp-sfa.com). The remaining authors declare no competing interests.

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Ahannach, S., Van Hoyweghen, I., Verhoeven, V. et al. Citizen science as an instrument for women’s health research.
Nat Med (2024). https://doi.org/10.1038/s41591-024-03371-2

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Received: 28 June 2024
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DOI: https://doi.org/10.1038/s41591-024-03371-2

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Citizen science as an instrument for women’s health research

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Citizen science as an instrument for women’s health research

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Citizen science in the social sciences and humanities: the power of interdisciplinarity

Coproducing health research with Indigenous peoples

Setting the agenda for social science research on the human microbiome

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Acknowledgements

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