The researchers enlisted 105 primary care physicians in the multisite trial, which took place at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington State. After the doctors signed visit notes in the electronic health records, they sent emails to the patients inviting them to read the notes on the portals.
Of the 13,564 patients who had visit notes available during the study period, 11,797 opened at least one of the notes. That translated into 84% of the patients at BIDMC, 92% at GHS, and 47% at HMC. The number was lower at HMC for two reasons, said Harvard Medical School professor Tom Delbanco, MD, co-principal investigator with Jan Walker, in an interview. First, he noted, the Harborview portal, unlike those at the other two institutions, was brand new and patients had to get used to it. Second, many of the HMC patients were low-income and didn't have computers at home.
Nevertheless, nearly 90% of the study participants viewed one or more notes; at GHS, 87% read all of their notes, Delbanco said. "We were very pleased and surprised by this result," he said.
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Nearly half of the patients who read their notes filled out post-intervention surveys. Of those, 77% to 87% across the three sites reported that "open notes" helped them feel more in control of their care. Sixty percent to 78% of those taking medications reported increased medication adherence, which Delbanco considers one of the study's most important findings. Even if only 10% to 15% of the patients were really more adherent, he said, "that's a big advance in medicine."
He attributed the increased drug adherence to a combination of factors. After reading their doctors' notes, he said, "patients understand the need better, they remember it more, they feel like there's someone watching over them, and they know the doctor's going to be writing about it next time."
Across the sites, 20% to 42% of patients reported sharing notes with others, mostly family members and caregivers. Delbanco pointed out that this could be a boon for people caring for their parents, who might not be able to give a full account of their doctors' visits.
Up to 36% of the doctors changed their documentation in response to note sharing, and up to 21% reported that it took them more time to write notes. But, despite the fears of some physicians that patients would pester them over the content of their notes, the doctors had few conversations with patients about the notes and barely noticed any change in their workloads.
Also, 70% of the physicians surveyed at the end of the study said that note sharing had other benefits, such as strengthening their relationships with patients. Some doctors also mentioned improvements in patient satisfaction, patient safety, and patient education. With 99% of patients saying they wanted to continue to read their notes, no participating doctor curtailed their access after the study.
Delbanco noted that four out of five doctors were "enthusiastic" about note sharing at the end of the year, including some who'd been resistant at first. Others who still didn't like the idea, as well as physicians who had declined to be part of the study, had come around to supporting open notes because their patients wanted it, he said.
If note sharing became the standard of care, Delbanco added, it could have an unintended consequence: It would force all physicians to document their patient encounters honestly.
Recently, after investigative articles appeared about physicians and hospitals using electronic health records to pump up their billing, the Obama Administration came down hard on the industry, demanding that hospitals ensure EHRs were not being used to facilitate "upcoding." At the core of the allegations was the practice of importing past visit notes into the current note, changing a few details, and using that as the basis for charges.
If patients could read their visit notes, Delbanco contended, physicians could no longer do this kind of thing. "If you're the patient, and you read the same thing about yourself every time, what are you going to say? It's nonsense. You will keep doctors honest."