ABSTRACT
Lisa A. Moon
The digital health consumer is at the center of policy changes related to data access and information exchange. The 21st Century Cures Act (Public Law 114–255, 114th Congress, 2016) has indeed moved consumers to the front of the line as the focus of new technology and methods of sharing health data emerge (21st Century Cures Act, 2016). Regulators proposed rules that require healthcare organizations, health plans (insurance) and providers to make health data available to patients in a format that is usable through a mechanism that is easy to adopt. Innovators are rushing to identify and propose ways that consumers can participate in data sharing using application programming interfaces (APIs). Likewise, health information networks are deploying platforms and tools that can assist organizations and healthcare consumers to meet these new rules. If successful, for the first time in the history of the United States, consumers will be considered a member of an information exchange network. Though a nascent set of activities, this may prove to be a significant transformation in the consumer’s role in the management of their individually, identifiable health information. This chapter describes the legal underpinnings, new technologies and role of the consumer in the access, control and sharing of health data. And it relates the significance of these new data rights dimensions to the nurse informaticists’ role.
