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.
@phdmoon
I see health data similar to how Google, Facebook , Linked-In, etc. and the social media treat our personal information. Much like a health data record, they maintain an electronic record, but instead of health history they maintain all of our posts, preferences, spending patterns and so on in which they build out a complete map of our existence. They can then complete any holes through their artificial intelligence algorithms and deep learning and discover ways to monetize our life for their business benefit and for marketing to us.
Health data, buy default of individuals not having choice with how it is used, will slowing erode the little privacy we have left. The health industry without doubt is looking for ways to monetize this treasure trough through secondary use. I'm a private guy. I want a choice. I also want any monetization of my data to have to have my opt in with a choice for what I'm willing to accept in payment for their use if I opt in.
Do you see any path toward data use and monetization of it being required for patient opt in? What can we do to prevent the health industry from slowing dumbing us down on this issue until they have finally and successfully coopted our health data to the point where we passively accept it because we have no other choice?
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Yes, the monetization of health data for consumer benefit (they get paid for use of their data) is just now being considered. This is mostly because consumers have started to demand control of their health data. Technology to control access and permissions based on consumer preferences is not available today. So innovation must occur.
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https://conservancy.umn.edu/bitstream/handle/11299/188923/Moon_umn_0130E_18133.pdf?sequence=1&isAllowed=y
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