How do consumers participate in health information exchange?

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.

Consumer control of digital health information is characterized by desire for a high level of detail (i.e., granularity; Caine & Hanania, 2013; Dhopeshwarkar et al., 2012; Patel, Dhopeshwarkar, et al., 2011; Swartz, Caine, Alpert et al., 2015). A high level of detail is evidenced by digital information parsed and separated based on type of data and health data sharing preferences of consumers. The technical capability of C-ME resembles electronic data sharing capabilities found in financial services and online banking (Banning & Tritle, 2014). Individuals would serve as intermediaries of information exchange in the health care ecosystem (ONC, 2015). The recognition of C-ME as an information exchange method acknowledges the powerful role that consumers play in health care transformation (Daniel et al., 2014; Williams, Mostashari, Mertz, Hogin, & Atwal, 2012). Successful C-ME relies on a complex system of data governance that relates to public policy, legal regulation, the health care industry, and consumer preferences (Moon, 2017). Similarly, C-ME requires a future state in which health data sharing preferences of consumers are operationalized as a standard technical capability in information exchange.

To make this happen, the regulatory environment must change. Federal regulations that govern health information are outdated, do not include consumers acting as data intermediaries, and are challenging to operationalize in a rapidly digitizing health care industry (Baumer et al., 2000; Daniel et al., 2014; Rothstein, 2007). The patchwork of state legal standards for disclosure of personally identified information has created confusion and variability in local interpretation and impeded information exchange (Baumer et al., 2000; Daniel et al., 2014; Pritts, 2001). Federal regulations, such as 42 CFR Part 2, protect sensitive data (e.g., chemical dependency, sexual health, and HIV or mental health information) and include rules written prior to health data digitization that cannot be managed in current technology environments (e.g., complex re-disclosure requirements). HIPAA focuses on simplification of administrative transactions for health care delivery and payers (U.S. Department of Health & Human Services, 2013). HIPAA does not reflect a current trend toward consumers aggregating, owning, and controlling their personal health data. Consequently, fragmentation of health records has become common place and secondary use of health information without individual consent is widespread (Baumer et al., 2000; Bourgeois, Olson, & Mandl, 2010; Harper, 2014).

Lisa Moon (2017) Dissertation Research. Health Data Sharing Preferences of Consumers. University of Minnesota. Informatics Program.
@phdmoon