Conceptualizing fairness in the secondary use of health data for research: A scoping review

Abstract

ABSTRACT With the introduction of the European Health Data Space (EHDS), the secondary use of health data for research purposes is attracting more attention. Secondary health data processing promises to address novel research questions, inform the design of future research and improve healthcare delivery generally. To comply with the existing data protection regulations, the secondary data use must be fair, among other things. However, there is no clear understanding of what fairness means in the context of secondary use of health data for scientific research purposes. In response, we conducted a scoping review of argument-based literature to explore how fairness in the secondary use of health data has been conceptualized. A total of 35 publications were included in the final synthesis after abstract and full-text screening. Using an inductive approach and a thematic analysis, our review has revealed that balancing individual and public interests, reducing power asymmetries, setting conditions for commercial involvement, and implementing benefit sharing are essential to guarantee fair secondary use research. The findings of this review can inform current and future research practices and policy development to adequately address concerns about fairness in the secondary use of health data.