Factors affecting the availability of electronic patient records for secondary purposes – A case study

Abstract

The purpose of this paper is to explore secondary use of Finnish electronic patient record (EPR) data in the context of clinical research and product development. Further, EPR availability enhancing procedures and technologies are analysed. The sensitive nature of patient data restricts the use and availability of EPR data in secondary purposes. A case study of secondary users of EPR data was conducted in Southwest Finland. Semi-structured interviews were used to evaluate the effectiveness of procedures and technologies implemented to protect EPR data. In total, 9 experts were interviewed from the fields of academic research, product development, and health management. The results show that three main factors affecting the availability of EPR data in secondary use are data management, privacy preserving, and secondary users. Challenges included in data management concerned the effect of demanding data request procedures and external information system service providers. Two privacy preserving approaches were identified: the use of altered data and protected EPR processing environment. These approaches provide higher availability or more valuable content, both affecting possible secondary users and use cases.