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Rückert-Eheberg, I.-M. ; Heier, M. ; Simon, M. ; Kraus, M. ; Peters, A. ; Linkohr, B.

Public attitudes towards personal health data sharing in long-term epidemiological research: A Citizen Science approach in the KORA study.

BMC Public Health 24:2317 (2024)

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BACKGROUND: Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management. METHODS: Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich. RESULTS: The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman's terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important. CONCLUSIONS: The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.

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Publication type Article: Journal article

Document type Scientific Article

Corresponding Author

Keywords Citizen Science ; Co-creation ; Epidemiological Cohort Management ; Health Data Sharing ; Participatory Research ; Public Engagement; People Participate; Bias

ISSN (print) / ISBN 1471-2458

e-ISSN 1471-2458

Journal BMC Public Health

Quellenangaben Volume: 24, Issue: 1, Article Number: 2317

Publisher BioMed Central

Publishing Place Campus, 4 Crinan St, London N1 9xw, England

Non-patent literature Publications

Reviewing status Peer reviewed

Institute(s) Institute of Epidemiology II (EPI2)

Grants Helmholtz Zentrum Mnchen - Deutsches Forschungszentrum fr Gesundheit und Umwelt (GmbH) (4209)