Ethics practices associated with reusing health data: An assessment of patient registries

Abstract

Background As routinely collected patient data have become increasingly accessible over the years, more and more attention has been directed at the ethics of using such data for research purposes. Patient data is often available to researchers through patient registries that typically collect data of patients with a specific disease. While ethical guidelines for using patient data are presented frequently in research papers and institutional documents, it is currently unknown how patient registries implement the recommendations from these guidelines in practice and how they communicate their practices. In this project, we assessed to what extent a sample of 51 patient registries provides information about a range of ethics practices.