Should Patients See Their Doctors’ Notes?

June 24, 2013
Although HIPAA allows patients to view and amend their medical records, most never have and don’t realize that they can. Doctors have concerns regarding this, but a recent year-long pilot showed that patients value access to their notes. Thus, the age-old question remains, should patients read their doctors' notes?

In July 2010, Pauline Chen, M.D., surgeon, and New York Times columnist, wrote about an experience she had involving a patient and his wife wanting a copy of what Chen wrote in their medical file following a visit.

When Chen brought this up to fellow doctors and nurses, most of them scoffed at the idea. “Maybe they are thinking of suing you,” one doctor said. “[Now], they’re going to start calling and e-mailing you with questions about what you wrote,” a nurse said. As Chen put it, her colleagues’ reaction could be summed up into this: “The barbarians are at the gate.”

The doctors and nurses Chen spoke with might as well have referenced one of the greatest lines in the history of American film when Jack Nicholson tells Tom Cruise in court, “You can’t handle the truth!” in “A Few Good Men.” Clearly, many medical professionals feel that patients can’t handle the truth concerning their doctors’ notes.

It’s now nearly three years later, and significant steps have been made to quell the skepticism. This has been a trending topic as Stage 2 of meaningful use continues to raise the bar in terms of how and when hospitals and physician groups must make patient data available.

A recently concluded 12-month pilot initiative, called OpenNotes, brought together 105 primary care doctors and more than 19,000 of their patients to evaluate the impact on both patients and physicians of sharing doctors’ notes after each patient encounter. Led by Tom Delbanco, M.D., and Jan Walker, R.N., of Boston’s Beth Israel Deaconess Medical Center (BIDMC), the study included 24 primary care physicians and 8,700 patients at Danville, Penn.-based Geisinger Health System, and additional patients and physicians from BIDMC and Seattle-based Harborview Medical Center.

These notes are different from regular visit summaries, which give patients more limited snapshots of their visits. Conversely, a note contains a detailed account of the visit, including the history, exam, relevant lab or study findings, and the clinician’s assessment and plan of care. The study’s results showed that patients who read their notes felt more engaged. Close to 11,200 patients—approximately 82 percent—opened at least one note contained in their electronic medical record (EMR).

Of the 5,391 patients who opened at least one note, 77 to 87 percent across the three sites reported that OpenNotes made them feel more in control of their care and helped them adhere to their medication regimens. Consequently, the project’s success spurred one of the health systems in the trial—Geisinger— to grant more than 100,000 of its patients access to their doctors’ notes for the first time through its patient portal beginning in May.

While progress has been made in this major step of the patient engagement movement, skepticism still remains. Will doctors be less candid with their notes knowing that patients will be reading them? Is this something doctors even want to partake in? After all, about one-third of the 173 doctors polled at the start of OpenNotes declined to take part in the project. And related to that, will patients develop unnecessary anxiety from the content of the notes?

Jonathan Darer, M.D., chief innovation officer for the division of clinical innovation at Geisinger, recently admitted to me that these are concerns, but small ones. The OpenNotes trial allowed doctors to exclude patients who they felt couldn’t handle access to the notes, and according to Darer, not one doctor at Geisinger reported spending more time in out-of-office communications answering questions from the patients or their families.

Ultimately, the overwhelming majority of patients wanted access to their notes, did in fact read them, and were able to handle them in a responsible manner.  And way more surprisingly, the doctors were on board too—many approached Darer after the trial and admitted that despite initial hesitance, this is better for their patients. And those who did express concern did so with touchy subjects as cancer, obesity, substance abuse, and mental health.

Ironically, since 1996, when Congress passed the Health Insurance Portability and Accountability Act (HIPAA), patients have had the right to read and even amend their own records. However, most patients have never done this, and likely don’t know they even have the right to. This trial could be a monumental piece into educating and engaging patients about something that could be very beneficial to their health.

For instance, the role of the informal caregiver in healthcare has continued to expand. According to, 65.7 million informal caregivers make up 29 percent of the U.S. adult population, and those caregivers who live at home with their care recipients spend nearly 40 hours per week providing care. That burden could be greatly reduced if they could access to their recipients’ notes, and this sharing of notes is something that could be a key future implication of the OpenNotes trial.

Additional benefits could include fewer medical errors and greater patient understanding. It’s quite possible that doctors can write something down incorrectly (they are human after all), and patients would have the ability to fix that. And medical jargon can get quite technical, meaning patients could gain considerable knowledge and comprehension regarding their healthcare by further researching what granular terms mean.

So despite the concerns that still remain—and they are valid—they shouldn’t get in the way of something that could provide tremendous value to patients and their families. Can patients handle the truth? Will greater clarity for patients outweigh any potential burden for physicians? I say if transparency, collaboration, and engagement are where we want to go with the new healthcare, then yes, patients must be given the chance to handle the truth and should have every right to read notes about their health. Here’s hoping that the OpenNotes trial was a positive step in that direction.

What do you think? Should patients have access to their doctors' notes? Feel free to leave comments below or respond to me on Twitter by following me at @HCI_RLeventhal.

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