Technology advancements related to the aggregation, re-use, and exchange of data outpace the development and adoption of policies, procedures, and processes essential for oversight of consumer health data secondary use (Rosenbaum, 2010; Safran & Labkoff, 2007). Individuals are just beginning to know about widespread secondary uses of health information. However, many are not aware of how far outside the health care system their sensitive data flows (Harper, 2014; Reed, 2007). If patients do know, then secondary re-use may be one of many reasons consumers have anxiety related to information privacy. The positive result of this issue is that consumers are likely to engage in health care activities if information privacy, data security, and consent management include mechanisms for consumers to control access. The negative result of this issue is mechanisms that allow consumers to manage data sharing preferences (aggregation, access, and control) require strong education regarding the benefits and risks of data sharing - education that has not yet been delivered.
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).
Lisa Moon (2017) Dissertation Research. Health Data Sharing Preferences of Consumers. University of MN.
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