German primary care data collection projects: a scoping review

Konstantin Moser, Janka Massag, Thomas Frese, Rafael Mikolajczyk, Jan Christoph, Susanne Unverzagt

Keywords: general practice, routine data, ambulatory, data extraction, Germany,

Background:
Worldwide, there exist a number of large primary care data collection projects using anonymized electronic health records extracted directly from practice management systems. The projects enable important health services research questions to be answered e.g. by including detailed clinical input data or by allowing for disaggregate analysis of outpatient data.

Research questions:
Since the projects as a whole are very country-specific, the objective of this scoping literature review is to summarize research projects based on electronic health records in primary care in Germany.

Method:
From May to June 2021, two databases (MEDLINE and LIVIVO) relevant to health services research were sought to cover English and German language articles. Terms identified for the search string followed three dimensions: “general practice”, “routine data” and “Germany”. To identify missing literature, project homepages were searched, project managers were interviewed, and references of selected articles were screened.

Results:
After reviewing 778 references, 153 publications were included. We identified four active and two terminated primary care data collection projects in Germany since 1992. The projects strongly differ in terms of their funding, registry population, number of practices included, ways of data collection and access, technical implementation, variables collected and recruitment strategies. Studies that have emerged from the projects most often include pharmacoepidemiological and health utilization topics such as drug safety monitoring, prescription patterns, comparing real-life treatment with guidelines for major diseases, multi-morbidity and consultation events. The most common study designs identified are cohort, cross-sectional, and case-control. Many publications addressed methodological issues like project descriptions, methods of data extraction, preparation and analysis.

Conclusions:
German primary care data collection projects deal with many complex methodological, technical and data protection hurdles including practices recruitment and software compatibility issues. Moreover, such registers often operate in legal gray areas in terms of longitudinal data extraction. Only a small part of the studies identified actually included data.

Points for discussion:
What experience has been gained with research based on electronic health records?

What lessons can be learned from primary care data collection projects in Germany?