Stakeholder’s Perceptions of Value and Risks in Data Governance for the Secondary Use of Health Data

Abstract

<p>The study is a literature study assessing the value expectations and risks perceived by the different stakeholders related to the governance of secondary use of health data. A key value expectation for all stakeholders was found to be that data provides public benefits and “common good”, especially through academic research. Especially for the researchers improvement of health equity in the society was also an important value expectation. For patients and also for decisionmakers security and privacy related risks were often mentioned. For all stakeholders the risk of stigma for different groups in the society and for the patient herself was seen to be important. Constant and clear communication towards all stakeholders about what data is collected, how it is used, what the expected benefits are and how the risks are managed needs to be a key element of health data governance solutions. All stakeholders see the importance of involving also the patient representatives to the governance of health data. Data governance should be developed towards a continuous and transparent collaborative process, where all stakeholders voice is heard, and they can affect the decisions.</p>