Patients open to data sharing if they control access

The state of New York requires patient consent to have their data accessed through health information exchange, and a majority surveyed are willing to have their data stored automatically, as long as they can retain control over it. The study published in the Annals of Family Medicine was based on a 2008 telephone survey of 170 residents.

More than two-thirds said they would agree to having their data stored automatically, but wanted the following controls included:

  • Safeguards against unauthorized viewing of their information (86 percent)
  • The ability to see who has viewed their information (86 percent)
  • The ability to stop electronic storage of their data (84 percent)
  • The ability to stop all viewing (83 percent)
  • The ability to select which parts of their health information are shared (78 percent).

Among those uncomfortable with automatic storage of their data, 78 percent wanted to make specific approvals, and most preferred restricting information by clinician (83 percent), visit (81 percent), or information type (88 percent), according to an announcement.

The authors concluded that patient buy-in is essential to any systems that store or share patient data. Curiously, in other surveys, patients say they want to manage their own health records, but then seem indifferent when it comes to doing so. In one study published in the Journal of the American Medical Informatics Association, most patients didn't bother using personal health records, so the PHRs failed to improve monitoring of their hypertension. 

Offering personal records online has been touted as a way to boost patient engagement and loyalty.

To learn more:
- read the study
- here's the announcement

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