OpenNotes research raises patient privacy concerns

As touted by some patient advocates and medical professionals who want to give patients access to their data and doctors' notes, online access to medical records for patients has the potential to improve care.

But there's always potential privacy loss to worry about, and a study published in the Journal of Medical Internet Research on OpenNotes, an initiative that invites patients to view their visit notes, aimed to identify patient's attitudes toward privacy when given access to their records.

Participants in the study consisted of 3,874 primary care patients from Boston-based Beth Israel Deaconess Medical Center, Danville, Pa.-based Geisinger Health System and Harborview Medical Center in Seattle, who were surveyed at baseline and after a one-year period in which they were invited to use OpenNotes to read their visit notes through a secure patient portal.

Nearly one-third of patients reported concerns about privacy before beginning the program, and close to 37 percent expressed concern about privacy after the intervention. The level of concern among most participants did not change during the intervention, but 15.5 percent reported more concern post-intervention, and 12.7 percent reported less concern.

"When considering online access to visit notes, approximately one-third of patients had concerns about privacy at baseline and post-intervention," the study's authors said. "These perceptions did not deter participants from accessing their notes, suggesting that the benefits of online access to medical records may outweigh patients' perceived risks to privacy."

During the kickoff of the Consumer Health IT Summit last week in Washington D.C., co-founder of the Society for Participatory Medicine Dave deBronkhart--aka, ePatient Dave--talked about OpenNotes and said patients perform better when they know better. Providers, overall, must be more consumer focused, in their efforts, he said.

To learn more:
- read the study

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