By Corey Meador,
Many people trying to gather their health-care data may be all too familiar with calling medical records departments, driving to a clinic to sign a release, and paying a fee for a pile of papers with loads of medical information they don’t understand.
But this spring, new federal rules went into effect that will allow patients to see the clinic notes physicians write, which advocates say will improve patients’ knowledge of their own health.
Supporters of the open-notes effort say they are optimistic that this change will make a big difference because people will be able to click on their patient portal — such as MyChart and other similar apps — and see what their doctors have written, rather than just a list of often confusing test results and other information. Psychotherapy counseling notes are except from the new requirements.
Catherine DesRoches, executive director of OpenNotes, a think tank that promotes sharing clinical notes with patients, calls this a “new world” where shared notes are valuable tools to improve communication between patient and physician while strengthening their relationship.
But not all doctors are as enthusiastic, concerned that patients might misinterpret what they see in their doctors’ notes, including complex descriptions of clinical assessments and decisions.
Suzanne Salamon, associate chief of clinical geriatrics at Beth Israel Deaconess Medical Center in Boston, says giving patients more info is good, but she worries about how using common doctor terminology might come across: “words like ‘drug seeking behavior’; patients wanting oxycodone and I felt that it wasn’t necessary, you have to be careful about how you say that, because the patient may feel it was necessary and may really resent the fact that you’re thinking that they’re a drug-seeking person.”
The medical note has gone through many evolutions since the first known medical note in 1800 B.C. Egypt, when surgical cases were transcribed onto papyrus and used for teaching at a later time. In the 18th century, clinicians wrote private journal entries. In the 20th century, notes became integrated into medical records, in an effort to systematize the collection of health information and data for billing.
The electronic format introduced in the 1980s — and now used in most U.S. medical practices and hospitals — offered an arguably more efficient way to store and share medical data for use, primarily, by medical staff. Now, the medical note written by doctors after they have seen a patient is being morphed into a tool to communicate with the patient rather than just among health-care providers and billing departments.
DesRoches says she thinks this new format will “help even out the power imbalance between patients and clinicians.” Or, as the OpenNotes website puts it, it is “motivated by evidence indicating that when health professionals offer patients and families ready access to clinical notes, the quality and safety of care improves.”
“Your health record is your health record,” says Bettina Experton, a public health physician in California.
“It’s your physician’s record as well. But you have a right to access it,” adds Experton, founder of a clinician led tech company that has been advocating for over 20 years to give patients easier access to their health information, including clinic notes.
Stan Brady, a 65-year-old patient at the Cleveland Clinic with multiple chronic illnesses, says that reading the clinic notes from his primary care and orthopedic physicians has helped clarify the physician instructions and remind him of medication regimens.
When DesRoches first heard of shared notes, she thought this was going to be useful for only patients who were highly educated and well resourced. But after years of research, her group observed that patients who are traditionally underserved by the health-care system are more likely to report benefits from reading their notes.
“Patients with lower levels of formal education, patients who have limited English proficiency, patients who self-identify as racial or ethnic minorities, they’re more likely to say that reading their doctors notes helps them feel in control of their care, helps them understand their medications, improves their trust in their provider,” she says.
But Salamon says she is worried how doctors may edit themselves knowing that patients might misinterpret what is written about psychiatric assessments, substance abuse documentation, and concerns about adherence to medication or medical advice. It may be upsetting for patients to read certain assessments made by their physician, she says.
But conveying these ideas along with tentative diagnosis in the note is important so that other health-care team members are aware of what a physician is truly thinking. Would doctors now have to censor themselves? The fear, says Salamon, is that “you have to soften the note so much that it may lose what you’re trying to say.”
She says that her hospital sent a tip sheet about how to write notes in preparation for the shared notes transition. “You have to change the vocabulary that we’ve used for years,” Salamon says.
But “I think a lot of it is good,” she adds.
Researchers who study patient perspectives recommend that physicians avoid judgmental language when summarizing what a patient says and choose certain terms less likely to be perceived as offensive, such as “elevated BMI” and “history of alcohol dependency” rather than “obesity” and “alcoholism.”
The research indicates that shared notes have many benefits for the patient, which should outweigh any growing pains for reluctant physicians.
One study showed that about 30 percent of patients viewed shared notes as important to taking their medications correctly and 70 percent said reviewing the notes helped them understand why the medication was prescribed — this was particularly true for patients whose primary language is not English.
A British study said patients want shared notes, felt empowered by them and thought they improved the relationship with their physician. A study from JAMA also showed patients were able to identify errors in their record when reviewing shared notes, including incorrect diagnoses and medications.
From the physician perspective, one study found physicians who were not using shared notes thought they would increase patients’ worry, but this has not been corroborated by patient surveys. In another study, 75 percent of the physicians who were using shared notes thought that they would improve communication with their patients.
And a March 2020 study showed one-third of the 1,628 physician respondents changed the language they used to make their notes more accessible to patients, with some reporting that they changed wording that could be perceived as being critical of the patient.
Other positive aspects of sharing notes include the ability of family members to review what happened at the visit.
“We have a lot of people who have dementia and it’s their kids who are reading the notes,” Salamon says.
Another benefit has been patients sharing their medical notes with physicians outside of their health network. This has helped Brady, for instance, avoid unnecessary tests, he says.
To physicians skeptical about the upcoming change, DesRoches says: “Just take a deep breath and try it out. Health care is always talking about how we’re going to put the patient in the center where the patient is a critical member of the team. We want the patients to have agency and take charge of their care.”
Salamon says: “Both clinicians and the patients have equal responsibility to do their share in making [the move to shared notes] a smooth transition. Shared responsibility will be necessary.”
DesRoches says she encourages all patients to review their doctor’s notes: “You’ll be amazed, I think, at how much the clinician was listening to you, how much they really know you. You’ll see your own words reflected back to you in the note. And that’s a very powerful experience.”
Brady agrees. “I think I’ve got a newfound, deeper respect for what physicians have to understand to do their jobs,” he says.
Corey Meador is a physician and a Health and Media Fellow at the Georgetown University Department of Family Medicine.
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