HIPAA regulation is not consumer centric (e.g., type of disclosure, purpose of disclosure, time limited disclosure) and does not include regulation specific to the management of health data sharing preferences of consumers. Much information, including wearable devices, applications, and patient generated data in the health care system is left uncovered by information privacy or data security protections (Pritts, 2001, U.S. Department of Health and Human Services, 2016). Typically, health data are controlled by the collector, who is usually the owner of the electronic health record (EHR) or information system. Consequently, individuals have little control of the aggregation, disclosure, or secondary use of their health care data by the larger health care industry.
The application of electronic health information for uses outside direct care delivery and for purposes other than those for which they were originally collected is known as secondary use (Safran & Labkoff, 2007). Secondary users of health data include insurance payers, pharmacy benefit managers, the technology industry via vendor contracts, hospitals, quality assurance, improvement, research without consent, state and federal databases, registries, and population health initiatives. Secondary use has increased significantly since the digitization of health care records (Burke, 2014). Secondary use of health care data can enhance health care experiences for individuals, expand knowledge about disease and treatment, and help improve care quality and effectiveness (Peel, 2007; Rosenbaum, 2010; Safran & Labkoff, 2007). Complex ethical, political, policy, and social issues exist pertaining to the secondary use of health data. However, reducing secondary use is likely to affect quality of care and system integrity through decreasing efficiency, effectiveness, and insight––activities that rely on retrospective and comparative data analysis (Miriovsky, Shulman, & Abernethy, 2012).
Lisa Moon (2017) Dissertation Research. Health Data Sharing Preferences of Consumers. University of Minnesota.
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