Revealed and stated preferences for sharing of patient-reported data in Austria

Abstract

Abstract Objectives Routine collection of health data is essential for creating sustainable, efficient, and equitable health systems. While administrative health data are collected automatically, successful routine collection of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) depends on voluntary participation. The aim of this study is to investigate how to increase participation in routine patient-reported data collection. Methods This mixed methods study used representative survey data from the Austrian population aged 18-70 (N = 1260) and 15 semi-structured narrative interviews with citizens and health data experts collected in 2024. Survey respondents were shown examples of PREMs and PROMs and indicated their willingness to share them, depending on the recipient and purpose. Interviewees answered the same questions while providing insight into their decision-making process, which was analyzed using thematic analysis. Wilcoxon rank sum tests were used to assess differences in willingness to share across recipients and data collection purposes. Results Survey respondents were more willing to share PREMs than PROMs (“rather yes” vs. “rather no”, p < 0.001). One explanation given in the interviews is that PROMs are more personal and convey sensitive information. In terms of sharing PROMs, people were most likely to share with their GP (81%) and least likely to share with private companies (7%). Facilitators for sharing identified in the interviews were improving personal care and the health system, while barriers were use for profit generation and fear of negative consequences for the person sharing. Conclusions The results suggest handling the collection of PROMs demands greater caution compared to PREMs. Furthermore, clearly communicating personal and societal benefits arising from the collection and analysis of self-reported health data may increase participation in routine self-reported health data collection. Key messages • The collection of self-reported health data depends on voluntary participation. Clearly communicating personal and societal benefits of sharing self-reported data can motivate participation. • Self-reported data collection is essential for sustainable and efficient health systems. Compared to PREMs, people are more reluctant to share PROMs because they contain sensitive information.