Reuse of clinical data for research

There is little direct reuse of health care data for (bio)medical research. Instead, research projects still manually re-enter the required health care data into research systems. The purpose of this programme line is to change this situation and, ultimately, make all clinical data from UMCs available for every valid research question across the country with full protection of patient privacy and without impacting clinical care. Therefore this subproject has close connections with the NFU programme ‘Registration at the source’ which regulates the clear, one-off registration of patient data. The first results will comprise a series of pilot projects together with Registration at the source and TraIT.

Coordination: MUMC+/MAASTRO Clinic Maastricht

André Dekker points out in the interview "Reuse of clinical data for research: overcoming the hurdles" published in newsletter #3 (Oct 26, 2017) that the systems of the eight Dutch UMCs contain a wealth of patient data, such as medical images, physical examination results, and treatment outcomes. “These data have been collected to diagnose and treat patients, but we can reuse them to answer important research questions. However, reusing clinical data is not as simple as you may think. In addition to concerns about patient privacy, consent and data de-identification, there are practical hurdles,” says Professor André Dekker. In this Data4lifesciences project, we develop techniques to harmonise datasets and to transfer data in a secure way using the FAIR principles and the FHIR standard.