Patients want granular privacy control over health information in electronic medical records

View the full article written by  Kelly Caine and Rima Hanania at Patients want granular privacy control over health information in electronic medical records.

When will consent for the use of personal health data become a critical research topic?

Why won’t NIH, AHRQ, or HHS make research on consent and control over personal health information a priority?

Why is the government and academia ignoring this topic?

Results of AHRQ’s 20 focus groups across the US in 2009 showed:

  • ·A majority of the public wants to “own” their health data, and to decide what goes into and who has access to their medical records.
  • ·There was near universal agreement in all focus groups that if medical data are stored electronically, health care consumers should have some say in how those data are shared and used.
  • ·A majority believes their medical data is “no one else’s business” and should not be shared without their permission. This belief was expressed not necessarily because they want to prevent some specific use of data but as a matter of principle.
  • ·Participants overwhelmingly want to be able to communicate directly with their providers with respect to how their PHI is handled, including with whom it may be shared and for what purposes. Most believe they should automatically be granted the right to correct misinformation.

From: AHRQ Publication No. 09-0081-EF. Final Report: Consumer Engagement in Developing Electronic Health Information Systems. Prepared by Westat; July 2009. Available at:

Surely consent is worthy of study.

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