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Maxqda deduce10/29/2022 ![]() The lack of publicly available information on access policies conflicts with ethical requirements linked to principles of transparency and accountability.ĬDW should publicly disclose by whom and under which conditions data can be accessed, and provide designated governance structures and policies to increase transparency on data access. In practice, this might limit the effective data sharing needed to fulfil the high expectations of data-intensive approaches in medical research and health care. The description of data access and use governance in the scientific literature is characterized by a high level of heterogeneity and ambiguity. The qualitative analysis led to a final set of three main thematic categories: (1) requirements, including recipient requirements, reuse requirements, and formal requirements (2) structures and processes, including review bodies and review values and (3) access, including access limitations. Twenty-three scientific publications and one policy document were included in the final analysis. A qualitative thematic analysis was applied to all included literature and policies. ![]() ![]() We performed a systematic review of (a) the published scientific literature on CDW and (b) publicly available information on CDW data access, e.g., data access policies. This study assessed the spectrum of data access and use criteria and procedures in clinical data warehouses governance internationally. Therefore, the development of practice oriented and evidence-based policies is crucial. As the complexity of the data flow increases, greater transparency and standardization of criteria and procedures are required in order to maintain objective oversight and control. ![]() At the core of large-scale data integration efforts, clinical data warehouses (CDW) are also responsible for data governance, managing data access and (re)use. The promises of improved health care and health research through data-intensive applications rely on a growing amount of health data. ![]()
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