It’s soon going to be easier to read your doctor's notes from your last visit thanks to a measure to improve patient record transparency. Starting in April 2021, all medical practices will be required to provide patients free access to their medical records. The concept of sharing medical notes is known as OpenNotes.
Under the 21st Century Cures Act, consumers will be able to read notes that recap a visit to the doctor’s office as well as look at test results electronically.
In the past, accessing your doctor's notes could require long wait times and fees. The Health Insurance Portability and Accountability Act (HIPAA) made it legal to review medical records, but it didn't guarantee electronic access.
More than 250 healthcare organizations in the U.S. (including multiple locations within a single system) are already sharing notes with patients digitally.
With OpenNotes, doctors share their notes with patients through electronic health records (EHR). Practices and hospitals use various kinds of software for EHRs, such as MyChart. Once the mandated medical transparency measure goes into effect, patients will be able to log in and see their notes.
The mandate was supposed to begin on November 2, 2020, but in the midst of the COVID-19 pandemic, the deadline was extended to April 5, 2021.
Doctor’s notes will include consultations, imaging and lab findings, a patient's medical history, physical exam findings, and documentation from procedures.
Cait DesRoches, executive director of OpenNotes (a group advocating patient note access), explains that patients will have two ways to get their notes. Either the organization will put the notes on the portal automatically or a patient can request that notes be added to the portal.
“The notes are full of great information for patients,” DesRoches tells Verywell. Viewing the notes can help patients recall what they discussed with their doctors during a visit as well as remind them of what they’re supposed to do after an appointment.
“My hope is that organizations will implement this in a really robust way,” DesRoches says. “That’s when the health system will get to the place where they’re seeing the benefits.
Being able to see notes in an electronic portal also provides patients with the opportunity to ensure that their medical records are accurate. Before the mandate goes into effect in April 2021, talk to your doctor about how you will be able to access your medical record.
The ability to view documentation from medical care sounds like a great opportunity for patients, but some worry that it could create confusion. For physicians, there's also the potential for an increased workload, as they might need to respond to questions that arise when patients see—and question—what's in their notes.
UC San Diego Health launched a pilot program using OpenNotes for primary care patients in 2018. Marlene Millen, MD, a professor and doctor in the UC San Diego Health , told MedicalXpress that she did not see an increase in inquiries from patients when their notes were available.
There are some cases when a doctor does not have to share medical notes with patients. These scenarios are different state by state, as privacy laws vary.
Doctors can withhold medical records if they think releasing the information will lead to physical harm, such as in the case of partner violence or child abuse.
Providers also do not have to share information regarding certain diagnoses that are considered protected, and psychotherapy documentation is not shared. However, other mental health services outside of talk therapy—such as talking to your primary care doctor about depression—are included in the notes.
Depending on the state you live in, DesRoches explains that parents can also view notes of their teen’s doctor visits. Parents might not have access when teens turn a certain age, based on the state. However, the rules don’t supersede state laws on privacy for adolescents.
OpenNotes.org reports that reading doctors' notes benefit patients in many ways and may lead to better health outcomes. According to OpenNotes, patients who are able to review their doctors' notes:
Several studies have assessed OpenNotes. A study published in the journal BMJ Open in September 2020 found that medical transparency is a right that is viewed favorably among people in different countries including Canada, Australia, Japan, Chile, Sweden, and the U.S.
Another study published in the Journal of General Internal Medicine in July 2020 found that patients typically understand their doctor's notes and that the information in their record is accurate. However, there were several notable disparities, and participants in the study had suggestions for improving the quality of access.
The researchers found that if patients didn’t understand a note or found inaccurate information in their notes, they had less confidence in their doctors.
According to a report in NEJM Catalyst, the ability to exchange information—including requesting information from patients before a visit—has been instrumental during the COVID-19 pandemic. In addition to sharing notes with patients after a visit, doctors were able to send a pre-visit questionnaire to patients that enabled them to gather more detail before the visit.
“We suspect, for example, that patients and care partners may recall even less of telemedicine encounters than they do after face-to-face office visits," the authors noted. "As a result, they may turn more often to reading their OpenNotes online."
The researchers concluded that once there are patient- and clinician-friendly mechanisms in place for record-sharing, "inviting patients to contribute directly to their records will both support patient engagement and help clinician workflow.”
Wayne Brackin, CEO of Kidz Medical Services, tells Verywell that it is “fair and reasonable” to expect patients would have access to doctors' notes. However, Brackin is concerned that doctors could “moderate their description in a manner that might affect care,” if they know that the patient or family will have access to records.
To have a layperson, with a more limited vocabulary, or who has English as a second language, read the notes in isolation could lead to misunderstandings.
— Wayne Brackin“This could be particularly sensitive with behavioral health issues," Brackin says, adding that a medical interpreter of sorts could help avoid misunderstandings during the initial record review. The language, abbreviations, and terminology in physician notes can be difficult for trained medical colleagues to interpret, let alone patients.
“To have a layperson, with a more limited vocabulary, or who has English as a second language, read the notes in isolation could lead to misunderstandings,” Brackin says.
Suzanne Leveille, RN, PhD, a professor of nursing at the University of Massachusetts and a member of the OpenNotes.org team tells Verywell that patients are generally enthusiastic about having online access to their office visit notes, but many providers initially expressed concerns that giving patients access to their notes could cause more worry than benefits.
"Our large surveys across health systems have not shown this to be the case. Very few patients report they became worried or confused from reading their notes," says Leveille, who also authored one of the OpenNotes' studies. "Overwhelmingly, patients report they benefit from note reading, for example, that it’s important for taking care of their health, feeling in control of their care, and remembering their plan of care."
While concerns about misunderstandings are not unwarranted, most patients report they are able to understand their notes, and that they have benefitted from viewing them. In cases where patients have been able to spot—and correct—mistakes, they feel not just more empowered, but safer.
"Open notes can improve patient safety," Leveille says. "About 20% of patients pick up errors in the notes and some report the errors to their providers."
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By Kristen Fischer
Kristen Fischer is a journalist who has covered health news for more than a decade. Her work has appeared in outlets like Healthline, Prevention, and HealthDay.