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Projects such as OpenNotes may transform how physicians and patients use and access medical records.
Many physicians are not comfortable sharing their progress notes with patients, concerned that they will take offense, be confused and add to the practice workload by calling or emailing with questions.
But under the Health Insurance Portability and Accountability Act (HIPAA), physicians must share their notes with patients who ask. Some physicians have embraced this sharing, encouraged by a nonprofit
Boston-based initiative called OpenNotes. Their experience can serve as a guide to others who want to navigate this challenge.
A note is a much richer source of information for the patient than lab results or an algorithm-driven clinical summary, says Janice Walker, RN, MBA, a principal investigator at OpenNotes and a researcher at
Boston’s Beth Israel Deaconess Medical Center. "Your labs are a series of data points, but notes, especially if you [the patient] have a chronic condition and if you read the notes over time, tell the story of how you're doing."
The OpenNotes team of investigators, physicians and medical informatics experts works to make note sharing the norm rather than the exception. Through research and guidance, OpenNotes encourages hospitals and physician practices with electronic health record (EHR) systems to push notes onto the patient portal and automatically notify patients when the note is available.
OpenNotes began in 2010 with a two-year pilot study among 105 primary care physicians at three institutions-Beth Israel Deaconess Medical Center in Boston; Pennsylvania-based Geisinger Health System; and Harborview Medical Center in Seattle-involving 19,000 patients. Today, more than six million patients have access to clinicians’ notes at 25 healthcare systems across the country through the initiative.
And with the U.S. Department of Health and Human Services (HHS) urging more transparency regarding patient records (see page 2), that number could grow.
University of Missouri Health Care in Columbia began sharing notes with patients for outpatient visits in January 2015. "In the last three years, we’ve been working on engaging our patients in their own healthcare, and you can't be engaged if you’re not informed," says
Thomas Selva, MD, a pediatrician and the system’s chief medical information officer. Sharing notes was the "natural next step."
The system's physicians were hesitant at first, concerned about changing how they write notes so patients understand them and about the time required for more detailed notes. Selva says none of these concerns came to pass.
Some providers were concerned about what to do when a patient wants to share the note with family members but doesn’t want all the information in it revealed. To address that concern, University of Missouri Health Care physicians can create a separate note-containing the sensitive information-that is not posted to the patient portal, says Selva.
Nisha Basu, MD, an internist at Healthcare Associates, a Beth Israel Deaconess clinic, had some worries early on. Among these was whether more patients would email her, confused by what they read, or whether patients might misconstrue something she wrote about their mood or mental health.
But Basu says she decided from the start to continue writing the notes as she always had, and to be clearer with her patients during office visits so that they will have heard in the visit everything that will be in the note. “If I’m a doing an ultrasound to look for x, y, z and cancer, I really should communicate to the patient that those are the four reasons why we’re doing the ultrasound,” she says.
“Transparent notes will require transparent doctoring,” Sigall Bell, MD, who leads the OpenNotes Patient Safety Initiative, a multi-site study examining the relationship between OpenNotes and safety outcomes, told Medical Economics via email. “We advise doctors to write what you say, and say what you write. We hope it will motivate more open communication, perhaps even including challenging conversations.”
Basu also realized that she needn’t worry about patients seeing her notes on their mental health or substance abuse. “Our department of psychiatry wholeheartedly decided to do OpenNotes. And I thought if the psychiatrists thought that this is a good thing, then I should not be worried about what my patients read in my notes,” she says.
But Basu’s workload did increase. While patients seemed to understand her notes and were not confused by acronyms, some emailed her with questions asking for more detail, she says. The clinic is considering how it can better distribute the added workload among team members.
Basu is in the minority, however. In the original 2010-11 OpenNotes study, only 3% of doctors reported spending more time addressing patients’ questions outside the office visit. Selva says University of Missouri Health Care’s patients actually call less. “They used to call in the past because they didn’t remember what the physician said. Now they can go to the notes,” he says.
That ability to refresh memory is one of the clear benefits to patients of sharing notes. In surveys, patients who read notes say it helps them to better understand their medical conditions and their plan of care, and they feel better prepared for future visits and more in control of their health, says Walker. Patients who read notes also become more conscientious about taking their medications, she says.
Up to 92% of patients in the 2010 OpenNotes study went to the patient portal and looked at their doctor’s notes. Five years later, 60% of notes were still being opened by patients at Beth Israel Deaconess.
Most doctors say their training in note writing was haphazard, perhaps from an attending who gave them helpful feedback, Bell says. OpenNotes could be used to more consistently teach residents about proper note writing by inviting families and patients to give feedback.
Some practicing doctors never learned to write notes properly and could use some constructive criticism, before their notes reach patient eyes, says Michael Infantino, MD, a partner with New York Cardiovascular Associates in New York City.
“Don’t start putting in your own editorializing. Don’t say, ‘This patient came in dressed like a slob,’” says Infantino. “I’m talking about the most extreme examples, but in 30-some-odd years, I’ve seen them all. We’ve had to talk to some physicians to remind them what is not appropriate to write in a note.”
Infantino has no concerns about patients seeing appropriately written notes, although his practice does not put the note in the patient portal but provides it upon request. But those requests are rare. “Most of our patients are not even interested in the clinical summary,” he says.