Review Article - Journal of Child and Adolescent Health (2019) Volume 3, Issue 1
A narrative systematic review of medical registries.
Introduction: Medical registries are valuable stores of data for research and public health monitoring purposes. This review aims to identify the benefits of medical registries to healthcare, determine the components of effective registries, assess concerns with patient privacy, and develop guidelines for designing quality medical registries.
Method: Pubmed was screened for articles related to medical registries, data management, and patient privacy. Thirty-seven articles adhered to the selection criteria and were included in this review.
Results: Benefits of medical registries: Registries facilitate health outcomes research and can improve patient prognosis by identifying effective care protocols. Data quality and error reduction: Data quality control rests upon clear and standardized processes for data collection and input. Error reduction can be achieved by reducing manual text input and automating data transfer between sources. Automatic feedback features in registries are the most feasible methods of identifying data error. Privacy: Patient privacy must be preserved by anonymizing or pseudonymizing registry data. The preservation of public trust is important to maintain participation in opt-out registries.
Discussion and Conclusion: Registries can be designed to promote high quality data collection and storage by reducing systematic and random error. This review presents a framework for designing effective medical registries that fulfil research and health monitoring purposes while respecting patient privacy.Author(s): Williams ZR, Karpelowsky J