Abstract
Finding suitable participants is a big challenge for health research and is considered a significant barrier. Research referral portals (RRPs) matching participants with requirements of researchers are intended to overcome this barrier. Here, the willingness to share health data is the key success factor for this data-driven matching process. However, the variables and incentives influencing the willingness to share have not been researched in this specific context so far. Therefore, this article presents a two-stage study exploring individuals’ willingness to share personal health data with RRPs conducting two focus group interviews (n=13) and an online survey (n=1,223). The study investigated the willingness to share data among individuals for RRPs and identified five influencing data categories. We also identified factors such as attitudes towards technology, altruism, and science affecting willingness to share. Practical implications include refining matching processes and enhancing data security, while longitudinal studies are suggested for broader insights.
Publisher
University of Maribor Press