The tricky dilemma with open notes

I was working an ER shift and a patient came in with acute back pain of new onset. A full workup revealed a mass in her spine that was suspicious of metastasizing cancer, most likely from the breast. I had an earnest conversation with her about the potential diagnosis, and I scheduled follow-up appointments with her PCP and referred her to an oncologist. 

I assumed I would never see her again, until she returned to the ER a couple of weeks later with a binder of imaging studies, notes, and the biopsy report of her breast from her oncologist and her surgeon. She wanted to ask me what I thought of these reports, as I was the first doctor who suspected she had cancer. She was too terrified and anxious to wait for an appointment with her oncologist, so she drove to the ER, hoping to see me. 

Accessible medical records: It's the law

I could only imagine the distress she was experiencing, but I also empathized with her oncologist. I realized the sheer nightmare that open notes might be for specialists and other doctors who must manage waiting rooms full of anxious patients asking about something they don’t understand in their medical charts, with access granted by law.   

In 2016, Congress passed a provision that was added to the 21st Century Cures Act that allowed patients to access all of their medical records electronically without delay.^[] 

This meant that both patients and physicians could access the patient’s medical chart in real time. This includes all medical information, including physician notes, lab work, imaging, and biopsy results. This medical record accessibility, termed “open notes,” was passed into law in 2016 but did not take effect until April 2021. 

As a result, many physicians are still learning to adapt to this new form of communication. Well before open notes, patients could access their medical records only after submitting a request to the medical records department, which factored in wait time. 

While real-time access provides patients with transparency and a clear understanding of their diagnosis and treatment plan, it also allows for misinterpretation. This can cause a lot of distress for the patient and make for a difficult conversation with their physician. The patient may also be heightened emotionally before coming into the office for a discussion.    

According to a survey from JAMA, most physicians support open notes and believe it will improve the physician-patient relationship.^[] However, it may also increase the time physicians spend on documentation. 

“In this web-based survey study of 1,628 clinicians, most viewed note sharing positively (74% agreed that it is a good idea, and 74% viewed shared notes as useful for engaging patients in their care), and 37% of physicians surveyed reported spending more time in documentation,” the researchers wrote. 

Managing patient confusion and unnecessary anxiety

One of the concerns with open notes is that it will increase patient anxiety. What if patients access their medical records for the first time late at night when they cannot contact their physician? What if patients come across complex medical jargon they cannot understand and assume the worst? Or what if a patient finds out they have a new cancer diagnosis, or their chronic illness has dramatically worsened? 

As physicians, we may not be able to control when patients access their medical information. Still, we can have open conversations about the best approach to accessing their medical information, especially if we are concerned about the patient’s mindset or potential diagnosis. We can advise our patients that medical jargon and lab work can be confusing, and as a result, that they shouldn’t panic but reach out to us for explanations. 

If we suspect a poor diagnosis, we can ask that the patient schedule an appointment to discuss the results with us. 

Physician self-censorship

Requiring the release of all of our notes to patients may necessitate more time spent on documentation, as we feel we must re-word objective interpretations out of concern that patients may feel offended or judged. Physicians may feel they need to adjust their language to prevent using typical jargon such as “poor prognosis,” “morbidly obese,” “noncompliant,” “guarded,” and “patient denies,” and so on.  

As physician note writing is the primary way healthcare workers communicate with each other regarding patient care, it may be tricky to balance empathetic language with language that is clear and concise. 

Empathy, trust, and open communication

Open notes can potentially improve the patient-physician relationship by increasing patient engagement, trust, and communication. Giving patients the ability to access their medical information in real time allows them to feel empowered to participate in their medical decision-making. Patients can share their information with their loved ones, which can help them adhere to their treatment plans.

Open notes encourage physicians to use precise language in medical records. For example, instead of labeling a patient “obese,” they can shift to a more empathetic note-taking process, and use BMI figures instead. Using empathetic language can help improve the physician-patient relationship. Although this note-taking style may take some time for physicians to become used to, it fosters the patient-physician relationship and the shared decision-making process.