Study finds most patients want the option to withhold data from their doctors

The study comes out of The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health, published as a five-part special supplement to the Journal of General Internal Medicine, and it shows that patients for the most part want controls of their data. Using Eskenazi Health’s in-house electronic record system, researchers gave 105 patients the option to block sensitive information, including information on sexually transmitted diseases, substance abuse or mental health, from their care providers. Doctors could still gain access to the data if they deemed it medically essential by hitting a “break the glass” button in the back-end interface. Read More

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Challenges...
http://jamia.bmj.com/site/icons/amiajnl8946.pdf
  • patient safety should trump all other values; corporate concerns about liability and intellectual property ownership may be valid but should not over-ride all other considerations;
  • transparency and a commitment to patient safety should govern vendor contracts;
  • institutions are duty-bound to provide ethics education to purchasers and users, and should commit publicly to standards of corporate conduct; and
  • vendors, system purchasers, and users should encourage and assist in each others’ efforts to adopt best practices.

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