Opening up the medical record, redux

A year or so ago I blogged about the pros and cons of opening up the medical record so patients could read everything that was written about them, including the doctor’s notes.

Well, the initial results are in from OpenNotes, a demonstration project exploring the feasibility, benefits and pitfalls of allowing patients to see the doctor’s notes about their visit. The findings, reported this week in the Annals of Internal Medicine, suggest it’s not an easy practice to implement and that the implications “are broad and filled with uncertainty.”

The project involves more than 100 primary care physicians and 25,000 patients at selected practices in Massachusetts, Pennsylvania and Washington. Patients don’t have to read the doctor’s notes if they don’t want to; what’s noteworthy about this project is that instead of shielding this information, as physicians have traditionally done, it is voluntarily being shared with patients who ask to see it.

What exactly is the doctor’s note? Good question.

The visit notes often contain observations about the patient. Was he or she anxious? Well informed? Confused? Belligerent? The notes might outline the doctor’s train of thinking about a possible diagnosis for the patient or the need to rule out something serious. They might also sum up the plan of action – ordering a test, for instance, or watchful waiting to see if a problem resolves on its own.

Although the main purpose of the doctor’s note is to document the encounter for future reference, it’s also used in determining third-party payment, in tracking measures of clinical quality, and sometimes in settling questions or even lawsuits over the care received by the patient.

In other words, it’s a pretty crucial piece of the patient’s medical file. But is it helpful for patients when they have access to the doctor’s notes? Will it lead to a better understanding of their health and a better relationship with the doctor, or might it have some negative consequences? That’s what the OpenNotes project aims to find out. The study involves surveys of the participating doctors and patients both before and after the demonstration project, as well as a collection of personal stories about the process. The study authors also plan to evaluate whether health care utilization changes as a result of implementing OpenNotes.

You’d think it would be relatively simple for doctors to share their notes with their patients, but the OpenNotes project is finding that it’s not so straightforward. The Annals study reports that doctors worry about the impact on their time:

… They anticipated calls, letters and e-mails as patients seek clarification, disagree with statements, or correct what the doctors consider trivial errors of fact. Some felt they would have to compose scientifically imprecise notes that leave out important diagnostic and therapeutic considerations. Some were embarrassed by how they write. They talk about halting phrases as they hunt and peck on their keyboards, feared that the many typos that creep into notes will seem unprofessional, or were self-conscious about the impersonal appearance of notes generated by templates. Wondering how often phrases like “the patient denies…” or “the patient appears SOB [short of breath]” would evoke an angry response, some doctors anticipated spending considerable time editing notes. Several worried that apparent discrepancies between what they write and what actually happened in the encounter may jump out at the patient, whether real or simply reflecting imprecise patient recall.

They also worried patients might become frightened, angry or depressed as a result of what they read in their notes.

As for the patients, they have worries of their own:

Some clearly did not want to read what their doctors wrote because they were worried about discovering something they would rather not know, finding potential diagnoses that might make them anxious, or reading what their doctors really thought of them. Others feared reading something that would shake their trust in their doctors. Some felt that unfamiliar medical terminology would make them misinterpret what they read. They wondered how to learn to ask the right questions and who should teach them.

That’s the down side to note-sharing. Previous smaller studies have suggested, however, that there also can be significant benefits. These studies have found that when patients have more information, it often helps them become a better partner with the physician, and that the time factor hasn’t been as great as physicians fear.

I don’t know about anyone else, but I’m certainly intrigued by this study and what the eventual findings might show.

I can relate to physicians’ concerns about opening up their notes. I wouldn’t be keen either on sharing the contents of my reporter’s notebook with its scrawls, news lingo and idiosyncratic shorthand. (On the other hand, though, my sources don’t have to worry that other people will read my notes; no one sees them, and no one needs to see them, except me.)

I think there are also some very real concerns with finding a balance between Information Is Power vs. Ignorance Is Bliss. Where this line gets drawn is different for everyone. Sometimes physicians write pejorative or judgmental statements in their notes that can be upsetting to patients even when the statements are true (and especially when they’re not true, or when they’re based on a hasty 10-minute visit). Sometimes it can be too much for patients to know all the details of a surgery or a diagnosis.

It’s valid for physicians to wonder if they’ll be forced to self-edit their notes for fear of offending patients. On the other hand, a certain amount of accountability enters the equation when patients are allowed to review the doctor’s notes.

The Annals report sparked some interesting back-and-forth at the New York Times. “I want to read the notes,” one person wrote:

It is important to me. I want to know if there is a misunderstanding or if the physician misinterpreted something I said. I want to see the numbers on my test results, too. The notes can also give me a clue into the doctor’s attitude. If they indicate they don’t believe me, I can go find another doctor.

Someone else was emphatic that patients needed to know what the doctor says about them:The real issues are 1) outright medical errors or misstatements and 2) off-the-cuff characterizations of a patient’s psychological status that are 3) indelibly written in records that are passed on to other medical personnel, insurance companies, and so on.”

Physicians weighed in as well. Doctors make subjective observations of the patient for a reason, one physician wrote. “Please don’t judge our chart comments too harshly unless you know why we write what we write.” From another physician: “Medical charts must be brutally honest. There’s no room for fluffy warm fuzzies there.”

(Brutally honest? How about just being… oh, I don’t know… honest without the brutality?)

If you want to check out the official OpenNotes website, it’s here. There’s also an online survey you can take.

Health care clearly is evolving in the direction of greater participation by patients. Many, although not all, patients want this and welcome it. It’s significant that some of the roadblocks are now being demolished, making it easier for patients to have access to information which, frankly, they deserve to have shared with them. The journey likely will be rough at times. Not everyone is going to agree on the process or the principles. I’d like to think, though, that the destination – more involvement by patients and more participatory relationships between patients and doctors – will make the trip worthwhile.

Update, July 22: Here’s another look at this issue by Dr. Pauline Chen, who writes the “Doctor and Patient” column for the New York Times. She raises some of the same questions but adds another point: Even though patients are legally entitled to see and obtain copies of the medical record, including the doctor’s notes, they face many bureaucratic obstacles, ranging from outrageous copying fees to administrative foot-dragging and uninformed or uncooperative staff.

Image: Kinross House, Kinross, Scotland. Courtesy of Wikimedia Commons.

2 thoughts on “Opening up the medical record, redux

  1. Pingback: Power to the patients | HealthBeat

  2. Pingback: Opening up the doctor’s notebook | HealthBeat

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