A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity

Puhan, M. A.; Steinemann, N.; Kamm, Christian Philipp; Muller, S.; Kuhle, J.; Kurmann, R.; Calabrese, P.; Kesselring, J.; von Wyl, V.; Swiss Multiple Sclerosis Registry, SMSR (2018). A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity. Swiss medical weekly, 148(w14623), w14623. EMH Schweizerischer Ärzteverlag 10.4414/smw.2018.14623

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QUESTION UNDER STUDY: Our aim was to assess whether a novel approach of digitally facilitated, citizen-science research, as followed by the Swiss Multiple Sclerosis Registry (Swiss MS Registry), leads to accelerated participant recruitment and more diverse study populations compared with traditional research studies where participants are mostly recruited in study centres without the use of digital technology. METHODS: The Swiss MS Registry is a prospective, longitudinal, observational study covering all Switzerland. Participants actively contribute to the Swiss MS Registry, from defining research questions to providing data (online or on a paper form) and co-authoring papers. We compared the recruitment dynamics over the first 18 months with the a priori defined recruitment goals and assessed whether a priori defined groups were enrolled who are likely to be missed by traditional research studies. RESULTS: The goal to recruit 400 participants in the first year was reached after only 20 days, and by the end of 18 months 1700 participants had enrolled in the Swiss MS Registry, vastly exceeding expectations. Of the a priori defined groups with potential underrepresentation in other studies, 645 participants (46.5) received care at a private neurology practice, 167 participants (12) did not report any use of healthcare services in the past 12 months, 32 (2.3) participants lived in rural mountainous areas, and 20 (2.0 of the 1041 for whom this information was available) lived in a long-term care facility. Having both online and paper options increased diversity of the study population in terms of geographic origin and type and severity of disease, as well as use of health care services. In particular, paper enrolees tended to be older, more frequently affected by progressive MS types and more likely to have accessed healthcare services in the past 12 months. CONCLUSION: Academic and industry-driven medical research faces substantial challenges in terms of patient involvement, recruitment, relevance and generalisability. Digital studies and stakeholder engagement may have enormous potential for medical research. But many digital studies are based on limited participant information and/or informed consent and unclear data ownership, and are subject to selection bias, confounding and information bias. The Swiss MS Registry serves as an example of a digitally enhanced, citizen-science study that leverages the advantages of both traditional medical research, with its established research methods, and novel societal and technological developments, while mitigating their ethical and legal disadvantages and risks.

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