Transparency in the secondary use of health data: Assessing the status quo of guidance and best practices

Background / Rationale

While there are ample examples of secondary use (SU) of health data (HD) studies yielding valuable knowledge, there are also examples of studies that have a high risk of bias and provide misinformation. For example, prominent papers about Covid-19 were retracted after concerns had been expressed about the credibility of the database the results were based on. Cases like this highlight the need for more transparency in SU/HD studies.

Objectives

While there is a large infrastructure for clinical trial transparency, no extensive infrastructure seems to exist for SU/HD studies. In this project, we assess to what extent guidance for SU/HD studies does exist.

Methodology

Expected Results / Implications / Perspectives

Based on this assessment, we will identify gaps in the literature and provide recommendations for the development of respective guidance as well as for future research on transparency in SU/HD studies.