Emerging health data platforms: From individual control to collective data governance

Abstract

Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how traditional health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.