Promoting concepts for innovative participant and researcher engagement strategies across Europe
Year: 2025
Type: article
Abstract: This document describes the current landscape for strategies engaging participants and incentivizing researchers in research infrastructures (RIs) related to the sharing and using of data. Following a general introduction, the document describes findings from a literature review for the current status of stakeholder engagement of three distinct groups particularly relevant for large medical cohorts: research participants, researchers and cohort managers. The report ultimately contrasts the findings of the literature review with the combined knowledge and experiences of the authors and concludes with recommendations on engagement and incentive practices for research infrastructures.
Authors: van der Stijl, Rogier, Elvestad Gabrielsen, Maiken, Kozlakidis, Zisis, Mayrhofer, Michaela Th., Mah, Nancy, Sauramo, Minttu
Institutions: University Medical Center Groningen, Norwegian University of Science and Technology, City, University of London, Centre international de recherche sur le cancer, City St George's, University of London, Biobanking and Biomolecular Resources Research Infrastructure Consortium, Fraunhofer Institute for Biomedical Engineering, Hospital District of Helsinki and Uusimaa
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funder: European Commission
OpenAlex ID: W6968316837
FWCI:
Cites:
Cited by:
Related to: