Patient-Controlled EHRs: A Balancing Act between Privacy and Patient Safety

March 20, 2015

The cornerstones of healthcare transformation are patient engagement and coordinated care, facilitated by electronic health records (EHRs) that offer a comprehensive and shared view of patients. But who controls the information contained in EHRs—patients or providers?

  • Patient privacy advocates believe patients should have control over who can access their EHRs, using the principles of Fair Information Practices as the framework. They argue that if patients have the ability to limit access to their EHRs, they will be more likely to share sensitive information. Without control, they may withhold it.
  • Physicians argue that if patients block access to certain information, there may be adverse consequences.

First of Its Kind Study

To examine these questions, the Regenstrief Institute conducted a six-month trial, part of a three-year study funded by the ONC (Office of the National Coordinator for Health IT). The results of the study, directed by Dr. William Tierney, President and CEO of the Regenstrief Institute and the Associate Dean of Clinical Effectiveness Research at the Indiana University School of Medicine, were published in the 2015 Supplement to the Journal of General Internal Medicine (JGIM). It represents the first “real-world” trial of patient-controlled access to electronic medical records.


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