What prevents us from reusing medical real-world data in research

Paper by Julia Gehrmann, Edit Herczog, Stefan Decker & Oya Beyan: “Recent studies show that Medical Data Science (MDS) carries great potential to improve healthcare. Thereby, considering data from several medical areas and of different types, i.e. using multimodal data, significantly increases the quality of the research results. On the other hand, the inclusion of more features in an MDS analysis means that more medical cases are required to represent the full range of possible feature combinations in a quantity that would be sufficient for a meaningful analysis. Historically, data acquisition in medical research applies prospective data collection, e.g. in clinical studies. However, prospectively collecting the amount of data needed for advanced multimodal data analyses is not feasible for two reasons. Firstly, such a data collection process would cost an enormous amount of money. Secondly, it would take decades to generate enough data for longitudinal analyses, while the results are needed now. A worthwhile alternative is using real-world data (RWD) from clinical systems of e.g. university hospitals. This data is immediately accessible in large quantities, providing full flexibility in the choice of the analyzed research questions. However, when compared to prospectively curated data, medical RWD usually lacks quality due to the specificities of medical RWD outlined in section 2. The reduced quality makes its preparation for analysis more challenging…(More)”.