Earlier this year, a federal rule that requires clinical information such as doctors’ notes and lab and imaging results to be made immediately available to patients took effect. A little more than three months out from implementation, there are mixed reviews as to how well the so-called “Open Notes” rule is actually improving patient care.
Patient advocates and even many physicians have supported the concept of electronic health information in real-time, and say the rule is a first step toward dramatically improving the overall healthcare experience and can help lower the cost of care over time. But even proponents of the rule note that there are potential pitfalls, such as sensitive information reaching patients before their doctors have a chance to deliver and explain it.
Others say there’s bound to be a learning curve, and that feedback from patients and physicians needs to be documented and should be part of an ongoing conversation with federal officials. In their opinion, while the rule may be good in theory, it’s important to determine whether that also holds true in practice.
“Communication of information is essential for our profession and our patients,” Joseph Sellers, MD, president of the Medical Society of the State of New York, told MedPage Today. “Having ways to get information to patients as effectively and timely as possible is great, but we have to be careful about unintended consequences.”
Physicians’ primary concern
The criticism Sellers has heard from his medical colleagues centers around instances where patients get health information before physicians are able to help interpret it.
For instance, patients may receive pathology or imaging results electronically, prior to when their doctor is able to communicate with them via a phone call or office appointment.
A patient may find out bad news, and it may have been better for them to hear it first from their doctor, Sellers said. There may also be instances in which the complexity of test results makes them sound alarming, when they’re not. Or, there are times when physicians can help break down details that are difficult for the average patient to understand and digest.
“I think that having that relationship between the physician and the patient is so important. It provides reassurance; it provides confidence to patients in the healthcare system,” Sellers said.
Eric Schneider, MD, senior vice president for policy and research at The Commonwealth Fund, which supported the Open Notes rule, acknowledged the concern as a possible downside.
Patients may view information that’s frightening, Schneider said. That could include finding out about an abnormal mammogram or blood sugar reading that is higher than expected without any contextual information from a physician.
What’s in a note
Another concern is that physicians’ notes from office visits are full of technical language or comments that may be interpreted by patients as being disparaging to them, Schneider said.
There’s a learning curve for physicians, he said, regarding how to articulate information in their notes in a way that doesn’t disparage patients, but is also accurate.
Though some physicians have expressed concerns over whether patient access to physician notes could lead doctors to censor the information they include, Caitlin Donovan, senior director of public relations at the National Patient Advocate Foundation, said the Open Notes rule could in fact have the opposite effect.
The rule “may have the added bonus of making [doctors’ notes] more accurate,” Donovan said.
During a recent project, for instance, the foundation found that patients reported their weight as one of the factors that made them reluctant to see a physician altogether, she said. That’s because, oftentimes, the first thing a provider may focus on is a patient’s appearance or weight.
Instead of automatically writing the words ‘fat’ or ‘obese’ as the cause of a patient’s symptoms, for example, a less subjective approach to physician notes may help to prompt other considerations or causes of symptoms as well, she said.
Perks for patients
Of the rule more broadly, Donovan said, “I’ve never heard a patient say they’ve heard a result too soon.” She added: “Patients are stronger than you think.”
It’s part of where healthcare is going, including focusing on how patients want to be treated, Donovan said. Receiving physician notes and other information in real-time helps ensure patients understand what is being put in their records.
“And it allows us to have a greater part of that conversation,” Donovan said. “We can ask follow-up questions.”
Schneider concurred: “The benefits are really around that capacity to prompt a dialogue,” he said.
However, the Open Notes approach may also yield safety benefits, Schneider said. Many instances of unsafe care arise due to a breakdown in communication. Making more information immediately available to patients — or their caregivers — can sometimes flag these situations before they happen.
Additionally, when it comes to an ongoing move to more virtual care and telehealth, “this rule pushes that forward,” he said.
Higher quality, lower costs
Farid Vij, co-founder and chief operating officer of health tech company Ciitizen, said that there is no other service that consumers don’t have access to right away, and that health information should be no different.
The concept is in line with the goal of Ciitizen, which was founded in 2017 to help people access and control their own health data, and as a result, expand the list of options they have for their own care.
“Uncertainty is the hardest thing,” Vij said. It can be incredibly difficult for patients to know what next step to take because of a lack of information.
Empowering patients with their data not only helps them, but the broader health ecosystem, he said. Ultimately, that can lead to better outcomes and lower costs.
Vij and others view the Open Notes rule as a step in the right direction.
“I think this is a positive step for those patients who want to have easy, quick access to information,” said Sellers.
At the same time, Sellers reiterated the need for patient and physician feedback on implementation of the rule, and cautioned against letting any unintended consequences go unchecked.
“We have to learn how to use these tools [in a way] that is supportive to patients, that is kind to patients, and doesn’t cause disruption,” he said. “Hopefully, the government is going to stay on top of this.”
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