Consumer Health Data: Regulation, Governance, and Innovation

Abstract

Consumers are increasingly turning to mobile health applications (apps) for healthcare needs. Enthusiasm for their transformational potential is widespread, though there are concerns about ensuring ethical and socially beneficial uses of the person health data they generate. Here we consider, how can consumer health data be governed, so as to preserve individual privacy, choice, and autonomy while also facilitating their potential to contribute to health system innovation and research? Our goals in this paper are to highlight key data governance challenges related to consumer health data, particularly concerning regulatory oversight of these types of data, and then to outline an agenda for IS research, curriculum development, and engagement activities in this domain. We review sources of consumer health data, special governance challenges with this type of data, and emerging regulatory approaches relevant to consumer health data governance, and highlight research and pedagogy opportunities for IS scholars.