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Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants:
Rosalyn Leigh Carr1,2, Vita Chan2,3, Nicholas C West2
1The School of Biomedical Engineering, University of British Columbia, 6088 University Boulevard, Vancouver, BC, V6T 1Z3, Canada, 1 6048227810.
Interactive Journal of Medical Research
|August 27, 2025
Summary
This study highlights the need for multimodal dissemination methods and accessible educational materials when returning individual research results to participants. Standardized systems can enhance data sharing and participant engagement in research.
Area of Science:
- Data Science
- Bioinformatics
- Research Methodology
Background:
- The proliferation of smart devices generates vast amounts of data, creating opportunities for data sharing in fields like environmental science, health management, and astrophysics.
- Understanding participant willingness to share data requires knowledge of data assets, risks, benefits, and potential uses of data exchange.
- Developing trusted data-sharing platforms can increase data donation and enable personalized research result delivery.
Purpose of the Study:
- To develop a preliminary list of core requirements for standardizing the return of individual research results to study participants across diverse research disciplines.
- To inform the design recommendations for effective and ethical results dissemination systems.
Main Methods:
- A narrative literature review of existing platforms for returning research results to participants was conducted.
- Searches included English-language articles from May 2013 to May 2023, covering published research and gray literature.
- Data synthesis involved thematic analysis of 8 articles describing 7 different return of results systems, focusing on dissemination methods and participant engagement.
Main Results:
- Seven of eight reviewed systems utilized multimodal dissemination (e.g., physical documents, email, phone, digital platforms).
- Accessibility features were noted in one study; anonymization details were lacking in all.
- Four studies incorporated expert/clinician involvement and provided additional educational materials for participants.
Conclusions:
- Return of results systems should support diverse dissemination modes for text-based results.
- Accessible, lay-language educational materials are crucial for participant comprehension and utilization of research findings.
- Participants are receptive to receiving even unfavorable results, aiming to integrate them into their lives through informed actions.
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