Winter 2017

Open-and-Shut Case

John Santa, ’76, is leading an effort to make doctors’ notes from office visits readily accessible to patients, but not everyone is so eager to see it happen.

By Bruce Morgan

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Illustration: Mark Rosenthal

In his time working as an internal medicine specialist at the Portland, Oregon, V.A. between 2003 and 2008, John Santa, ’76, got to see the positive effects of his patients being able to go online and review his clinical notes in their medical files.

“A number of my patients told me, ‘Gosh, that’s great,’ and I saw them gain confidence from having full access that way,” says Santa, who quickly became a believer in the value of such transparency. From his home base in Portland, he is now leading an effort to spread the message nationwide through an advocacy organization called OpenNotes.

Not everyone is cheering the trend. “In my travels, I never met a person who couldn’t wait to see their note,” Santa relates. “Here’s something that 99 percent of patients want, according to one study we did, but it’s a different story among the doctors.” A 2015 Forbes poll found that one in six doctors said that no patient should ever see patient notes, and one third of doctors expressed concerns about the process. Physicians commonly worry that open access will create additional work for them, with patients demanding more time and attention than before—if not during office visits, then afterward, via phone and email. The threat of increased malpractice claims also puts some off.

“The angst is both technical and cultural.”

Despite these hesitations, OpenNotes has grown rapidly over the past five years, according to Marsha Semuels, the former executive administrative dean at Tufts Medical School, who served for a time as administrative director for OpenNotes. Right now, most of the estimated 8.5 million users of the system are concentrated in the Pacific Northwest. The organization’s ambitious goal is to enlist 50 million users by 2018 and make sharing notes the standard of care in the U.S.

Will it happen? Not without a struggle, it would seem. “The angst is both technical and cultural,” Santa says. Electronic medical records (or EMRs) in the U.S. are currently handled by a raft of independent vendors operating on systems that are not necessarily compatible with one another; Santa puts the total number of vendors between 70 and 100. “Can electronic records bend to support our approach?” he asks rhetorically. So far, just three operating systems are using OpenNotes.

But physicians’ cultural resistance to the new, more transparent approach—in Santa’s estimation, “a significant control issue”—poses an even keener challenge. “Will doctors support this? That’s the major obstacle we’re running into,” Santa admits. “I had one female colleague tell me, ‘John, this is a really bad idea’.” Another doctor who Santa encountered at a professional meeting confided, “Some of us believe that patients just shouldn’t be looking at the charts.”

Because it’s so new, the area has been little explored. But some early research suggests a host of medical advantages accrue for patients given greater access to their medical files. A recent survey of 13,564 patients among three medical sites—one a hospital in Boston (Beth Israel), another a predominantly rural practice in Pennsylvania and the third a safety-net hospital in Seattle—found overwhelmingly positive benefits for patients with minimal costs to physicians’ workloads. About 2 or 3 percent of doctors do experience some small changes, Santa concedes.

The organization’s ambitious goal is to enlist 50 million users by 2018 and make sharing notes the standard of care in the U.S.

In the survey, as many as 87 percent of patients reported that having access to open notes helped them feel more in control of their care, and up to 78 percent of those taking medications said they did a better job of taking their medicines on schedule. The volume of email and other electronic messages from patients to their doctors did not increase. “Many doctors were astonished by how little effect the [open notes] intervention had on their practices. Several wondered whether the intervention had been implemented,” the study authors wrote.

At the end of the yearlong pilot study, which was published in the Annals of Internal Medicine (October 2, 2012), fully 99 percent of patients wanted the system of open notes to continue, and not a single doctor of the 105 involved in the study chose to opt out.

“Patients accessed visit notes frequently; a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue,” the authors concluded. “With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.”

Generally speaking, large medical systems have been faster to adopt OpenNotes than small- and medium-sized practices, Santa reports. As one example of success, regional health insurance giant Kaiser Northwest, with some 550,000 patients, readily came aboard. So too did the M.D. Anderson Cancer Center in Houston, Texas. “I would say we’re off to a good start,” says Santa.

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