During many doctor’s appointments, in person or online, providers sit at a computer and make notes as they discuss a patient’s symptoms and concerns. The content of those notes, for the most part, remains a mystery to the patient. A patient portal might offer access to basic visit information, such as vitals taken or the results of tests, but nothing more.
As of April 2021, however, all patients can read not only lab results but also doctor’s notes. This change is a result of new provisions in a 2016 law called the 21st Century Cures Act. While expanded access to electronic health information can empower patients and help improve care, some healthcare professionals believe it could also lead to undue anxiety or even harm the doctor-patient relationship.
Some countries, such as Sweden, have guaranteed patients full online access to their medical records for at least a few years. In the US, patients have gained broader access to their records incrementally. The most recent development — a new rule added to an existing law — allows patients to access all of their electronic health information, including doctor’s notes, for free (at least in theory; not everyone in the US has reliable internet access). Additionally, one more change is coming in October 2022: Patients will be able to download their records to apps and compile records from different doctors, enabling them to share that information with any provider.
“This is not a new idea,” says Dr. Peter Winkelstein, executive director of the Institute for Healthcare Informatics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo. In 2010, the patient data transparency organization OpenNotes launched a study to see what happened when 105 primary care doctors granted 20,000 patients access to read their notes via secure online portals. According to the results, published in 2012, both providers and patients liked the program. From there, more doctors across the country started making their notes available to patients, Winklestein says.
Some doctors already compose their notes with the patient in the room, either dictating or sharing their screen as they type. “A lot of people have adopted the idea that patients should have access to this, and that it improves care because a patient can say, ‘That’s not quite what I meant,’ and it makes patients more comfortable that nobody is keeping things from them,” Winkelstein says.
And while patients could always request their medical records, the 21st Century Cures Act mandates that healthcare providers must make this information readily available.
“There’s good evidence that patients who are involved in their care have better outcomes,” says Winkelstein. “Having information available makes it easier to be involved in taking care of themselves.” Indeed, a survey of 1,000 patients in Norway published in 2020 found patients reported that using electronic health records improved their self-care and made them feel empowered. Other research finds it helps patients feel more in control of their care.
At a very basic level, sharing notes with patients helps them and their caretakers adhere to guidance on medication or other treatments, such as lifestyle changes. “A lot of times when they leave the office, patients aren’t sure they remember exactly what we said, so they will call us back,” says Dr. Sterling Ransone, a practicing family physician in Deltaville, Virginia, and president-elect of the American Academy of Family Physicians. “With electronic health records, it’s easy for them to go back to the doctor’s notes.”
The advantages go beyond actual care. At least half of electronic health records may contain an error, according to a study published in JAMA Open Network in 2020. If a patient sees something that’s incorrect, they can notify their provider of the mistake to get it corrected. “In most cases, this happens infrequently, and it’s usually minor, a typo or mistake that doesn’t affect their care,” Winkelstein adds. (Consider if the correction will change things or not before you reach out.)
Lastly, being able to share your health records easily, with any provider, is an advantage for patients. These days, you often have to sign a form and ask a provider to send your records to someone else. Then it’s on the patient to be sure the first provider sent the appropriate records, which can lead to numerous phone calls to each doctor that you’re trying to connect. If the 21st Century Cures Act develops a way to make sharing easy, it lifts the workload of patients as well as providers, who no longer have to fax papers.
Although access to electronic health records is mainly a good thing, it also comes with potential downsides. The biggest concern is that patients may experience anxiety (or worse) if they misinterpret test results or read alarming results, such as confirmation of cancer or a genetic abnormality in a fetus, before their doctor can call them to explain the meaning.
“When people see a mild abnormality in their lab work, they can get quite worried, even though it’s of no clinical importance,” Ransone says. For example, someone’s bloodwork for anemia may be one-tenth of a point off, causing them to think their condition is worsening, when that data indicates it’s not.
Patients might also misunderstand notes because they contain clinical jargon and abbreviations. Consider cancer test results, which may include the words “malignancy” or “potential malignancy.” “In one case, a patient accessed their results, and they didn’t have cancer, but the way it was phrased, they were very upset and disturbed, believing they might,” Winkelstein says. On a less serious but still potentially alarming note, rather than writing out “shortness of breath,” doctors will use “SOB”; you can imagine what a patient who doesn’t know that may think. Even phrases like “patient denies,” “patient refuses” and “noncompliant” could be perceived by patients as judgmental.
Lastly, doctors’ notes are often a way for a physician to record everything that crossed their mind during a patient’s visit, Ransone says. This can include a long list of potential underlying causes of the symptoms they’re exhibiting. If a patient sees this, they may see something alarming, such as the possibility of cancer, that the doctor has not yet had the opportunity to discuss with them, because their symptoms are more likely to be caused by something more common. “This could induce quite a bit of anxiety that may or may not be warranted,” Ransone says.
Keep communication open
To keep patients safe, the 21st Century Cures Act allows providers to omit information that they feel could cause the patient or someone else harm. And while a physician needs to share any notes about mental health discussions with a patient, psychotherapists are exempt from the rule and don’t need to make their notes accessible. Still, both Ransone and Winkelstein say doctors need to be cognizant of the fact that their notes are no longer only for them and try to write things so patients understand. Otherwise, providers risk degrading their patient relationships.
Overall, most healthcare experts believe the 21st Century Cures Act is a step forward and that increased transparency will improve patient outcomes. “It will be good for the doctor-patient relationship and allows patients to know what we are thinking so they can receive the best care,” Ransone says.
Just remember that if you dive into lab results or notes from any healthcare provider and don’t understand something, that’s normal. Rather than turning to Google, Ransone and Winkelstein recommend calling your provider’s office and talking to the doctor or a nurse. It’s not worth the potential anxiety of reading misinformation online or ending care with a great PCP because you mistakenly believe they think negatively of you.