Yes, patients can read your progress notes - and that's a good thing
Open-note medicine allows us to build transparency and trust with patients, but adds considerations to practice that clinicians should keep in mind
“Write your notes as if the patient were looking over your shoulder.”
I was given this advice by my attending physician on the first day of my third-year internal medicine rotation. While this line seemed a bit amusing to me in the moment, it underscored an important philosophy behind note-writing that I continue to carry with me.
When I first began writing admission, progress, and discharge notes in my third-year clerkships, I viewed them as purely medical documents filled with complex terminology and jargon that would only be read by other members of the health care team to help advance patient care. However, this could not be further from the truth. In addition to other team members, patients also have the right to read their notes, and they often do.
It is well-known among physicians that patients have had access to their medical records for years - including labs, imaging, pathology, and other documentation. This was largely due to the passage of the Health Insurance Portability and Accountability Act (HIPAA) in 1996 during the Clinton Administration. However, this was a fact not well-known to the public until relatively recently, and there still exist many hurdles and even disparities among different patient populations in their ability to access their records.
I myself experienced this hassle when trying to establish care with a specialist in Baltimore while I was in college. I wished to obtain a copy of a study I underwent at hospital at home in Georgia that I wanted to send to my new doctor. In order to accomplish this, I had to drive 30 minutes to the hospital, wait in the medical records line for over half an hour, submit several long forms, and wait for another 30 minutes while they copied my requested study onto a CD that I could take home. The whole ordeal took about 2 hours. And that was for one study. I cannot imagine how long it would take for patients who wanted personal access to records from one or more entire hospitalizations. For many patients, I suspected this hassle was not worth accessing their information.
To address these hurdles, legislation has been passed in recent years allowing rapid electronic access to patient documentation. Perhaps the most landmark of these laws was the 21st Century Cures Act, signed at the tail-end of the Obama Administration in 2016. This mandated that certain types of physician notes be available immediately for patients to access through secure online portals (e.g. MyChart). In recent years, the definition and scope of the mandated types of physician notes has been expanded to cover nearly all documentation of their care, kicking off what some have referred to as the “Open-Note Era.”
While many physicians have come on board with open-notes, there have been some genuine concerns that have been raised among the medical community that we should think carefully about as we transition to this new standard of care. This 2011 Annals of Internal Medicine study found that these included frightening patients with complex medical terminology, reporting honest thoughts when dealing with poor prognoses or patients who may be a safety risk, and writing about sensitive topics such as sexually transmitted disease, mental health, and substance use. A patient may not like being referred to as a “alcoholic” or “heavy smoker” by their physicians. Similarly, a cancer patient who opens his chart to see “Gleason Score 4+4=8 Prostate Cancer” as his #1 medical problem may become scared. A score of 8 seems bad right? They may not know that in most cases, even high-grade localized prostate cancer is very treatable with current therapies.
I myself share some of these concerns having cared for sensitive patients in my limited time being on the wards. When is it medically-relevant or appropriate to document a patient’s sexual history or religion during an inpatient hospitalization for community acquired pneumonia? I will be the first one to say that I am not sure. However, we should think hard about these considerations and proceed with caution to document relevant and accurate findings while being aware of the fact that patients will read their notes.
While the nuances of care in the Open-Note era are yet to be determined, I am confident that this is a step in the right direction when it comes to patient autonomy, one of the core pillars of medical ethics. Having access to all records - including notes - strengthens the physician-patient relationship, creates trust, and involves the patient more in their care. This ultimately serves the goal of helping patients make more informed decisions about their health. After all, the information that physicians choose to document in their notes is not theirs, it is the patient’s. It only makes sense to allow patients to conveniently access their own information.
Furthermore, open notes also have the potential to correct mistakes in the medical record. This BMJ article found that nearly half of recorded patient information contained mistakes. Patients know their own history the best, and can work with their doctors to correct any inaccuracies in the record, which can only serve to improve the quality of their care.
Perhaps the biggest consideration to keep in mind is how we as the medical community can balance accurate reporting with sensitivity towards patients as we write our notes going forward. Words matter, and using terms like addict, mentally retarded, poor historian, and noncompliant, will not serve the patient’s best interests. Nonjudgemental alternatives to be considered should be suffering from substance use disorder, history of autism, patient unable to recall, and nonadherent. This article gives great further guide on how to avoid stigmatizing language in notes.
These shifts in how we describe our patients is not only of importance at the attending physician level. It is a competency that takes time to master and should be an educational priority for residents and medical students, especially on inpatient services where patients are complex and notes must be detailed heavily. Even the notes I wrote on my first day of my first rotation are fair game to be read by patients, and students should be aware of that before they start their third-year experience.
Despite some genuine concerns and growing pains, open notes are now the new standard of practice in the US. In an era where AI is smarter than any physician, our ability to communicate will now be the most valuable skill in our profession going forward. This not only includes our ability to verbally establish rapport with patients at the bedside, but also our ability to write relevant medical information in an honest and respectful way in our notes. The time to adapt to this new change is now.
What I’m Reading, Watching, and Listening To:
Targeting Food Dyes Ignores the Real Crisis in Childhood Nutrition - Maryam Yuhas
Corporatization of Healthcare Spotlighted in New NEJM Series - Rachel Robertson
FDA Direct, Ep. 8 – Priorities for a New FDA - Marty Makary, Sanjula Jain, Vinay Prasad
The Role of Public Health Agencies in Creating Vaccine Policy - Peter Marks