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

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.