Enhancing the Availability of Electronic Health Records for Secondary Purposes – A Case Study

Due to the sensitive nature of patient data, the secondary use of electronic health records (EHR) is restricted in scientific research and product development. Such restrictions pursue to preserve the privacy of respective patients by limiting the availability and variety of sensitive patient data. Current limitations do not correspond with the actual needs requested by the potential secondary users. In this thesis, the secondary use of Finnish and Swedish EHR data is explored for the purpose of enhancing the availability of such data for clinical research and product development. Involved EHR-related procedures and technologies are analysed to identify the issues limiting the secondary use of patient data. Successful secondary use of patient data increases the data value. To explore the identified circumstances, a case study of potential secondary users and use intentions regarding EHR data was carried out in Finland and Sweden. The data collection for the conducted case study was performed using semi-structured interviews. In total, 14 Finnish and Swedish experts representing scientific research, health management, and business were interviewed. The motivation for the corresponding interviews was to evaluate the protection of EHR data used for secondary purposes. The efficiency of implemented procedures and technologies was analysed in terms of data availability and privacy preserving. The results of the conducted case study show that the factors affecting EHR availability are divided to three categories: management of patient data, preservation of patients' privacy, and potential secondary users. Identified issues regarding data management included laborious and inconsistent data request procedures and the role and effect of external service providers. Based on the study findings, two secondary use approaches enabling the secondary use of EHR data are identified: data alteration and protected processing environment. Data alteration increases the availability of relevant EHR data, further decreasing the value of such data. Protected processing approach restricts the amount of potential users and use intentions while providing more valuable data content.