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Project Tests Patients' Reactions to Open Access to Medical Notes

By Rebecca Adams, CQ HealthBeat Associate Editor

October 11, 2012 -- Giving patients access to their medical records through an electronic portal could increase their adherence to treatment instructions without overburdening physicians, according to the findings of a yearlong pilot program supported by the Robert Wood Johnson Foundation and the National Cancer Institute.

At a briefing in Washington last week, participants said that they believe that the practice of providing patients with open access to medical notes will be commonplace in the future. Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington participated in the project. Patients were allowed to view notes and completed a survey about their experiences. The results of the study were outlined in an article in the Annals of Internal Medicine about a yearlong pilot program.

None of the systems chose to stop providing access to notes after the experimental period ended.

The biggest question that arose is whether patients would be able to comment on or edit the notes. One out of three patients said that they should be able to approve the notes' contents. But in surveys of physicians at the three sites, 85 percent to 96 percent of doctors disagreed.

At the three sites, a total of 11,797 patients opened and viewed at least one note. Of the 5,391 patients who opened at least one note and completed a survey, 77 percent to 87 percent (depending on the location) said that having access to the notes helped them feel more in control of their care; 60 percent to 78 percent of those taking medications reported increased medication adherence; and 26 percent to 36 percent had privacy concerns. Only one percent to eight percent said they were confused, worried or offended by the notes.

Health system executives in the project who spoke at the briefing said that there are several business-related reasons why letting patients view the notes could save money or attract new patients.

"There definitely is a financial case, and a business case, to be made for this," said Eileen Whalen, executive director of Harborview Medical Center near Seattle, echoing statements by other executives at the briefing. Most health systems in the future will adopt some way of electronically allowing patients to view their records, they said, and those who adopt the practice early on will be able to tout their transparency and differentiate themselves from competitors.

"Long term, I believe this will become the standard of care," said Kevin Tabb, president and CEO of Beth Israel Deaconess Medical Center in Boston. "I just want us to get there first."

Whalen noted that it also can be much more efficient to let patients read the notes rather than require physicians to answer individual questions that could be answered simply by reading the documents.

Whalen shared her personal experience as the sister of a man with Stage 4 cancer. She said she has nine siblings who want to keep up with his treatment, so it would be far more efficient to let them all read the oncologist's notes rather than ask her to field phone calls from family members.

Mark Zeidel, chairman of the Department of Medicine at Beth Israel Deaconess Medical Center in Boston, said that it was important to move quickly to implement the practice without taking too much time for additional study first. Just as physicians didn't spend a great deal of time trying to figure out if penicillin was good to treat pneumonia, he said, doctors should begin providing access to notes with the idea that studies can come later.

"We need to push this very hard," he said.

  • Annals of Internal Medicine article
  • Publication Details