A federal rule allowing patients to more easily access clinical notes written in their medical records took effect in early April. Supporters of the move from both the patient side and the provider side say the new policy will improve patient outcomes and has very few drawbacks.
The “open notes” or “information blocking” rule is part of a set of laws called the 21st Century Cures Act. This large piece of legislation introduces changes to a wide range of medical information technology practices, including granting patients access to their own health information.
“Prior to the information-blocking rule going into effect, most Americans could not easily access their clinical notes,” Dr. Catherine DesRoches said in a video interview. DesRoches is a physician, an associate professor at Harvard Medical School and the executive director of OpenNotes, an organization that promotes research on “the effects of transparent communication among families, patients and physicians.”
What are providers required to share with me?
As of April 5, providers are required to share an assortment of information with patients and their legal medical proxies electronically, including eight different kinds of notes as well as pathology reports, radiology reports and other results via patient portals, email or other electronic means, free of charge.
“It’s a major expansion of what has to be available to patients electronically,” she said. “It’s kind of yanking healthcare data exchange into the modern internet era.”
DesRoches said the way the rule is written, providers must give patients access to the information in their health records without delay or charge in the electronic format of their choosing.
“So if the organization where a patient gets care uses any kind of an electronic system to keep patient information, including say, a Word document, then that information has to be given to you in the format that you request,” she said.
“And if they don’t have a portal, then they have to give it to you electronically in some other way, such as a secure file transfer, or maybe even on a thumb drive.”
The Cures Act was signed by then-President Barack Obama in 2016, Congress delayed implementing many of the provisions a number of times, most recently because health organizations were too overwhelmed by the Covid pandemic to comply with the changes. The open notes information blocking aspect of the law went into effect on April 5, 2021.
DesRoches said that all providers are required to follow the new policy now, but they have a six-month grace period before they can be fined for non-compliance.
What are the benefits of being able to see my notes?
DesRoches said that having access to their doctors’ notes can help patients retain information from their visits, correct errors that a clinician may have accidentally entered in their chart and help patients feel more empowered and in control of their care.
Dave deBronkart, a patient advocate in the Boston area, agrees.
“Open notes is a social movement based on the radical idea that patients have not just a right to see their notes, but that it has a valid use [for them].”
In 2010, deBronkart and his primary care physician participated in a study published in the Journal of Medical Internet Research in which doctors offered their patients access to their office visit notes through an internet portal over a period of 12 months. Afterwards, the study’s authors surveyed the patients and found that the majority felt they had benefited from being offered this access.
“It turned out that the results were overwhelmingly positive,” deBronkart said. “In short, 89% of patients who looked at a visit note were not scared and turned off by what they saw. They said they wanted to know more.”
Once most clinicians get the hang of making patient notes available, DesRoches said, most patients will be able to view them as soon as their visit is over to refresh their memories about what was discussed.
“Patients can use notes as an extension of the visit. So the note is a reminder of what happened during the visit,” she said. “We know that none of us remember what happens in a clinical visit. I’ve heard patients call it ‘the big amnesia.’ You get in there, you have a conversation, then when you get home, you don’t remember anything that you talked about.”
Correcting errors before they become a problem
Another benefit of open notes, deBronkart said, is that it makes it easier for patients to catch errors in their records before they result in harm. A 2020 study in the Journal of the American Medical Association by physician-advocates of open notes, found that around one in five medical charts contain mistakes, many of them serious. The authors found that patients who view their records are often able to detect the errors and let their doctors know so they can be corrected.
DeBronkart said that when his elderly mother had surgery recently, his sisters — whom his mother had authorized to see her medical records — discovered a potentially fatal mistake in her chart.
“Everything was done fine at the hospital but when he was discharged to rehab, there was no electronic data exchange. And so everything was printed out and then retyped in at the rehab,” he said. “And guess what? Somebody made a typo.”
DeBronkart’s mother has hypothyroidism but her medical record said she had hyperthyroidism. If she had required treatment, deBronkart said, doctors would have given her the wrong medication and actually aggravated her condition.
“My two sisters asked, ‘Could we check the chart?’” deBronkart said. “They found the mistake and got it fixed.”
While everything ended well for deBronkart’s mother, he said he shared this story to point out that with the new open notes legislation, more people will be able to advocate for themselves and their family members before something potentially disastrous happens.
What are other doctors saying?
“I think that the move towards transparency has won out through the federal legislation that is taking effect now. And, and that’s great,” Dr. Danny Sands, a physician, medical consultant and proponent of open notes, said in a telephone interview. “I think it’s hard for us to expect our patients to engage in their health care, unless they have access to the same kind of information that we do.”
Sands, who participated in the study of open notes that deBronkart did in 2010, said that while he and most doctors he knows think open notes will be a good thing, some have reservations.
“There are definitely dissenting voices,” Sands said.
In particular, now that patients have easier access to their notes, some doctors may feel compelled to reassess how they write things in a way that patients can read and understand.
“Notes are complicated and can be hard to read, and so we might want to frame things a little bit differently, be a little bit more plain in our language, perhaps use fewer abbreviations,” Sands said.
Concern about frightening a patient
Sands said some clinicians, for example, may be concerned about frightening a patient with serious-sounding medical terminology.
“I might say something in my notes like ‘I’m ordering these tests because I’m concerned about a malignancy,’” Sands said. “Then you might read this and say, ‘holy cow, malignancy?’”
He said doctors may worry that changing the way they write, including avoiding certain medical terminology, could reduce efficient communication with other doctors and nurses on the patient’s care team. But Sands believes the benefits of sharing notes with patients outweigh these potential risks.
“I am a big believer in open notes, but I am simply representing the other side of the coin that concerns some doctors now,” he said. “Even if we don’t change how we say things — except for perhaps not being pejorative — I think we’re doing good here, particularly if our patients are actually looking at these notes.”
DesRoches also acknowledged that doctors may have to change the way they communicate in charts.
“Our research suggests that some clinicians do make small changes in how they write their notes, particularly around language that could be perceived as critical to a patient,” DesRoches said. “And there are clinicians who kind of feel negatively about this, that this is going to be bad, that they have to change the way they write their notes. But I believe that in the end, changing the way notes are written could be very positive.”
What can you do? Ask to see your clinical notes?
The advocates of open notes ClearHealthCosts spoke to said that giving patients access to clinical notes helps only if they actually read them to understand as much as possible about their health and the decisions their care team is making.
“I encourage my patients to take a look at their notes every time, particularly before they come in for the annual visit,” Sands said. “But the number of times they do is pretty modest, actually.”
If your physician doesn’t explicitly let you know how to access your notes, you can always ask. DeBronkart said that was the only reason his sisters were able to locate the mistake in his mother’s chart:
“They asked, which is what you should do and everyone should do.”