A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data

Scientific literature and practice emphasize the need for a robust framework for the secondary use of health data, one that unifies standards and practices. Multiple reviews focus on secondary health data use from the technological perspective; thus, reviews combining the value and risks expectations from the perspectives of stakeholders are abundant. This study assessed the value expectations and risks perceived by patients, researchers, medical professionals, and decision-makers. The study identified that there are overlapping areas of expected value/benefits and risks, but in addition, each stakeholder has its unique expectations. Thus, only addressing common and unique expectations can enhance value creation in healthcare through the secondary use of health data. Based on these findings, we propose a conceptual model for governing the secondary use of health data. We advocate for data governance to be a continuous, transparent, and collaborative process where all stakeholders have a voice and can influence decision-making.