Methodological Guidelines and Recommendations for Efficient and Rationale Governance of Patient Registries
European Journal of Public Health
A key task of the PARENT Joint Action is to provide Member States with guidelines and recommendations on improving registry quality and interoperability readiness which in turn can encourage and improve the use of data for secondary purposes in a cross-border setting. By improving registry interoperability and secondary use of health data the total costs of data acquisition can be substantially reduced. Moreover, the streamlining of governance and management processes supported by the PARENT
... delines implementation and use will provide registry holders with the knowledge necessary to address e.g. questions of data protection and other central administrative matters. Approximately 40 authors contributed to the Methodological guidelines and recommendations for efficient and rational governance of patient registries. In addition, other experts from across the EU generously contributed their knowledge and insights on the topic, through participations in workshops and review of materials. The Guidelines were created to provide practical and 'hands on' advice to set up and manage patient registries as well as to enable secondary use for public health policy and research. Guidelines' chapters cover central issues regarding registries' operations, such as definition and types of registries, interoperability aspects, requirements for cross-border use of patient registries, how to create a registry, how to develop and implement the patient registry information systems, how to run a registry, quality dimensions of registries, changing and stopping registries and re-use of registry data. The use and maintenance of the Guidelines is supported by a Wiki tool. While the Guidelines are a first step towards greater interoperability of patient registries, a number of exciting and complex challenges still lie ahead, requiring continuous efforts to ensure that we utilise the full value of patient registries.