Disrupting the information order in health care: Institutions, policy regimes, and the value of data

This study analyzes how U.S. healthcare organizations view regulatory changes to the accessibility of patient health information as part of the 21st Century Cures Act. Rulemaking for the Cures Act recommended a technical change that would enable vendors in the consumer marketplace outside the institutional context and special data protections of health care to gain access to private patient data. We examine organizational stakeholders’ comments during the Notice of Public Rulemaking to show how organizational actors both inside and outside of health care use the institutional values and relationships of health care versus the market to evaluate the impact of the technical change. Healthcare insiders use professional ethics and doctor-patient relationships to defend the status quo of data protections in health care. Outsiders, such as consumer health apps, use the logic and relationships of the marketplace to challenge clinical control of patient information as well as data protections and property rights over patient health data. Technical change alone does not alter the information order of health care, but it creates an opening to challenge the existing meaning and management of information and thereby potentially disrupt established institutions in health care in the United States.