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Every participant is a PI: Citizen science and participatory governance in population studies

Research output: Contribution to journalArticle

Alena Buyx, Lorenzo Del Savio, Barbara Prainsack, Henry Voelzke

Original languageEnglish
JournalInternational Journal of Epidemiology
DOIs
Publication statusPublished - 17 Jan 2017

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Abstract

The willingness of people to participate in population-based studies has been declining for decades and is likely to continue to do so. Recently, large-scale cohort studies even had to be aborted due to poor recruitment. Although the use of online tools can boost recruitment in some contexts, attrition remains a big problem for such studies. This situation is deeply concerning for epidemiological research. The effects of poor recruitment and high attrition are poor statistical power and an exacerbation of selection bias, which in turn diminishes the representativeness of population-based samples. For example, the disproportionate reduction in participation of people with low socioeconomic status (SES) could have significant impact on the validity of study results, since one of the most robust findings of contemporary epidemiology is the association between low SES and disease risks. Unfortunately, recruiting participants for population studies from marginal or vulnerable groups seems particularly difficult. Recent patient- or participant-centred governance approaches to biobanking, although mostly focusing on matching consent and data protection requirements to the practical realities of population-based research, could also be seen as initiatives that focus on engaging participants more directly, in order to increase initial sign-up and decrease attrition. We suggest a bolder approach, namely the introduction of so-called citizen science or participatory research strategies into population research. This would involve the transfer of more control over research agenda setting, as well as the usage and handling of data and samples, to participants. It could facilitate more meaningful engagement of people with the information that they contribute to research projects and the project as a whole, and enhance the volume and persistence of participation in well-designed epidemiological and biomedical studies.

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