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Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences

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Abstract

For researchers to realize the benefits of real-world data in healthcare requires broader access to patient data than is currently possible given siloed data systems. To facilitate evidence generation, infrastructure must support integrated data collection and sharing enabled by patient consent. Critical to the success of data sharing is to design secured data sharing platforms around patient preferences and expectations. The objective of this review was to characterize patient and public preferences for secured data sharing platforms and incentives to share real-world data for health research. We conducted a scoping review of the data sharing and health informatics literature capturing patient and public values for data sharing platforms and incentivization. We searched Embase and Medline (OVID) databases for primary data studies. Two reviewers participated in study selection and data abstraction. Findings were summarized according to preference frequency within each major theme. The final search produced 253 articles. After screening, 12 articles were included for data extraction. Two studies discussed preferences for data sharing platforms, 7 discussed incentives preferences, and 3 addressed both. We identified considerable variation of patient and public preferences according to preferred consent mechanisms and level of control, willingness to trade off risks and benefits, and the type of incentivization appropriate to offer for participation. This preference variation informs the conditions under which individuals may be willing to engage with secured data sharing platforms to support research. Our findings indicate that platforms will need to be flexible to meet the diverse preferences of users and facilitate uptake.

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Acknowledgements

The authors wish to thank The Canadian Network for Learning Healthcare Systems and Cost-Effective Omics Innovation’s (CLEO) Working Group 2 members for their methodological support.

Funding

This work was supported by Genome British Columbia / Genome Canada (project G05CHS).

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Authors and Affiliations

Authors

Contributions

All authors contributed to drafting the research question, building themes, and editing the manuscript. The literature search, study selection, and data extraction was completed by AH and supported by SP. The first draft of the manuscript was written by AH, and AH and SP worked closely on the subsequent versions of the manuscript. DAR reviewed and provided comments on a final version of the manuscript. All authors approved of the final manuscript.

There is no primary study data from this review to deposit in a data repository.

Corresponding author

Correspondence to Samantha Pollard.

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Ethical approval and consent to participate

Each of the studies included in this review were published in journals that require approval from an ethics board or committee for research involving human participants.

Human ethics

Not applicable.

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Not applicable.

Competing interests

AH declares she has no relevant financial or non-financial interests to disclose. SP is co-director of IMPRINT Research Consulting and has received personal fees from Roche and Astra Zeneca. D.A.R. has received honoraria from Roche and Astra Zeneca.

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Hermansen, A., Regier, D.A. & Pollard, S. Developing Data Sharing Models for Health Research with Real-World Data: A Scoping Review of Patient and Public Preferences. J Med Syst 46, 86 (2022). https://doi.org/10.1007/s10916-022-01875-3

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