Publication date: Dec 27, 2024

At the beginning of the COVID-19 pandemic in 2020, little was known about the spread of COVID-19 in Dutch nursing homes while older people were particularly at risk of severe symptoms. Therefore, attempts were made to develop a nationwide COVID-19 repository based on routinely recorded data in the electronic health records (EHRs) of nursing home residents. This study aims to describe the facilitators and barriers encountered during the development of the repository and the lessons learned regarding the reuse of EHR data for surveillance and research purposes. Using inductive content analysis, we reviewed 325 documents written and saved during the development of the COVID-19 repository. This included meeting minutes, e-mails, notes made after phone calls with stakeholders, and documents developed to inform stakeholders. We also assessed the fitness for purpose of the data by evaluating the completeness, plausibility, conformity, and timeliness of the data. Key facilitators found in this study were: 1) inter-organizational collaboration to create support; 2) early and close involvement of EHR software vendors; and 3) coordination and communication between partners. Key barriers that hampered the fitness of EHR data for surveillance were: 1) changes over time in national SARS-CoV-2 testing policy; 2) differences between EHR systems; 3) increased workload in nursing homes and lack of perceived urgency; 4) uncertainty regarding the legal requirements for extracting EHR data; 5) the short notice at which complete and understandable information about the repository had to be developed; and 6) lack of clarity about the differences between various COVID-19 monitors. Despite the urgent need for information on the spread of SARS-CoV-2 among nursing home residents, setting up a repository based on EHR data proved challenging. The facilitators and barriers found in this study affected the extent to which the data could be used. We formulated nine lessons learned for developing future repositories based on EHR data for surveillance and research purposes. These lessons were in three main areas: legal framework, contextual circumstances, and quality of the data. Currently, these lessons are being applied in setting up a new registry in the nursing home sector.

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