Balancing the need for big data and patient data privacy--an IT infrastructure for a decentralized emergency care research database

Abstract

Emergency rooms of hospitals provide care to a lot of patients and have great impact on their outcome, so researching the quality of care seems important. Research using registries has yielded impressive results in other areas of medicine. However centralized data-storage has its pitfalls, especially regarding data privacy. We therefore drafted an IT infrastructure that uses decentralized storage to ensure data privacy, but still enables data transfer between participating hospitals. It implements an independent information broker to ensure anonymity of patients. Still it provides a way for researchers to request data and hospitals to contribute data on an opt-in basis. Although not an entirely new approach, the emphasis on data privacy throughout the design is a novel aspect providing a better balance between the need for big sample sizes and patient privacy.