Koppeling van kwaliteitsregistraties en CBS-microdata in de zorg: mogelijkheden, uitdagingen en aanbevelingen

Quality registries collect healthcare data on patient populations to measure and improve the quality of care. The Statistics Netherlands (CBS) collects personal data which under exceptional circumstances and specific conditions can be made available for research purposes. Linking quality registries to CBS microdata contributes to scientific research and prevents healthcare providers from recording data twice. This study provides insight into the needs and experiences of quality registries regarding the use of CBS microdata. The aim is to identify success factors and challenges to formulate recommendations that can optimize the linking process and stimulate data reuse. A questionnaire was distributed to fourteen registry holders, followed by four interviews. Thirteen registry holders had considered linking their registry data to CBS, of which three had analyzed CBS microdata. The main barriers to initiating research with CBS microdata were time constraints, financial limitations, and lack of knowledge about the required process. Other frequently mentioned challenges to analyze CBS microdata included obtaining institutional authorization, navigating the legal process, performing data linkage, undergoing output control, and the inability to provide feedback on the outcomes of care at the institutional level. This final barrier hinders the primary goal of quality registries, facilitating learning and improving the quality of care when using CBS microdata. Umbrella organizations could play a facilitating role by sharing knowledge and expertise, enabling researchers to conduct valuable research.