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Published On September 12, 2016

POLICY

Should Patients Read Their Progress Notes?

A nationwide program advocates that patients should have seamless access to their doctors' notes. But not everyone thinks this is a good idea.

Patients once had to file a subpoena to see their own medical records. Even today, the logistics for patients to acquire their charts are cumbersome enough that fewer than 1% of patients have done it. Calls for more seamless access resulted in the OpenNotes program, launched in 2010 at a handful of hospitals. It gives patients easy access to their medical records, including notes that clinicians write about their patients’ progress.

The founders of OpenNotes believed that improving accessibility—through either secure online portals or simple printouts—would encourage patients to be more active in their own care. As the program expands to its target goal of 50 million patients in the next three years, critics are voicing concerns. Letting patients see clinicians’ notes could cause confusion, they say,  and ultimately do more harm than good. Here, two experts offer their takes.

Yes. How can patients become active partners in their care if they cannot see what clinicians see? asks Jan Walker, co-founder of OpenNotes and assistant professor of medicine at Harvard Medical School in Boston.

When we first set out to study what would happen if we gave 20,000 patients online access to their medical notes, we truly didn’t know what we would find. So when we saw that 99% of those patients wanted OpenNotes to continue, we were astounded.

In that initial study, more than 80% of patients also told us that OpenNotes helped them feel more in control of their own health; 70% said the notes helped them be more likely to take their medications; and 85% said that they would prefer a provider who shares notes. Sounds like engagement, right? And we know that engaged patients have better outcomes.

What’s more, recent research suggests that having the patient’s eyes on notes may also be an important way to catch inaccuracies and improve safety. For example, we spoke with one patient who had forgotten about important follow-up care for a precancerous skin lesion but was reminded to make an appointment after reading the note, and another patient who discovered a wrong diagnosis in her chart that contributed to confusion in her care.

Many clinicians worry that they will be overwhelmed with requests to change something in the notes, while others have expressed concern that patient review might cause providers to censor what they write.

But so far, the number of requests for amendments at institutions sharing notes has stayed constant, with a significant percentage of these requests reporting inaccuracies or errors that have safety implications. And in our initial study, clinicians did not report changing the way they wrote their notes.

We know that OpenNotes will not be right for every patient. We also know that clinicians worry about possible extra demands on their time and that some patients will be confused or frightened by reading their notes. But in the more than six years we’ve been studying OpenNotes, we’ve seen little evidence that these are substantial risks. We continue to believe that OpenNotes is good medicine.

No, because clinician notes are informal records meant to aid clinician decision-making and are not a tool designed for patient engagement, says Steven Reidbord, a San Francisco–based psychiatrist in private practice.

Patients already have a right to their entire medical record. And certainly they benefit by easy access to labs, X-ray results and other medical data. But OpenNotes instead zeroes in on progress notes, the chart entries doctors write for themselves and colleagues to get work done. These tools are a poor choice for patient education or collaboration. Like a researcher’s lab notebook, these notes may contain speculation, marginalia and reminders to oneself; sometimes they are corrected in later notes. Unlike other medical paperwork such as a hospital discharge summary or a consultant’s letter, they document an unfinished process, not a conclusion.

OpenNotes’ own research shows that under this model doctors are less candid: Some avoid recording sensitive diagnostic possibilities and potentially pejorative terms like “obese.” Burying unpleasant medical concerns can hinder optimal care and cost lives.

Also, progress notes already serve many masters, including billing, quality improvement and legal defense. Many physicians feel their chief purpose has already suffered from serving all of these functions. OpenNotes worsens this problem by demanding patient education from them too. Most patients would find these notes unintelligible unless the technical language were simplified, yet simplifying them would render them less precise and useful. It isn’t hard to see why more than half the eligible primary care doctors refused to participate in an early trial of OpenNotes.

OpenNotes doesn’t stop at access. It envisions patients approving, amending and correcting their doctors’ notes—proposals widely opposed by physicians. Shared authorship could complicate clinical management and medical malpractice law by calling into question whether a note actually reflects the doctor’s thinking. Other experts are not expected to share their work tools with clients.

Collaboration is better achieved by simple doctor-patient discussion, and patient education by easily read handouts. Quality medical care is too important to sacrifice to feel-good initiatives.