The Health Information Technology for Economic and Clinical Health (HITECH) Act, Title XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act of 2009 (the Recovery Act; Pub. L. 111-5) supports the concept of consumers owning and controlling their personal health data. Technology needed to support this broad goal is in various stages of development. In the 21st century, health data sharing preferences of consumers are mostly managed through local “opt-in” or “opt-out” policies (Goldstein et al., 2010; Harper, 2014; Pritts, 2001). A consumer choosing to “opt-in” has all personally identifiable information in the shared record (Tripathi et al., 2009). A consumer choosing to “opt-out” has no personally identifiable information included in the shared record (Tripathi et al., 2009). However, it is unclear how the larger health care ecosystem encourages information exchange participation. Policy makers believe that the next generation of technology will rely on consumers being the intermediaries of their health data (Daniel, Deering, & Murray, 2014). A consumer who is a data intermediary owns, controls, and provides access to their health data based on individual preferences. A shift in understanding and practice begins with an environment that supports consumer-mediated exchange (C-ME).
Consumer-mediated exchange is one of only three types of health information exchange (directed, query, and C-ME) used to improve health care interoperability (Banning & Tritle, 2014; Daniel et al., 2014; Office of the National Coordinator [ONC], 2015). Direct exchange is electronic sharing between two information systems through one-way push transaction to a known, trusted entity (Banning & Tritle, 2014). Query exchange is both a push and pull transaction across a network and includes location, retrieval, and aggregation of information based on the end-user use case (ONC, 2015). Consumer-mediated exchange enables data aggregation and control, or access and use, of health information among providers, personal health records, and wearable health devices based on consumer preferences (ONC, 2015). Mechanisms that allow individuals to be data intermediaries are not readily available and the health care delivery environment is not equipped for full scale C-ME practices.
Lisa Moon (2017) Dissertation Research. Health Data Sharing Preferences of Patients. University of MN.
