Opening up the medical record, part 2

Last week this blog had a post about making medical records more open and accessible to their subjects, the patients.

Not just selected portions of the medical record, but the whole thing, including the doctor’s notes and observations.

One medical facility, Beth Israel Deaconess Medical Center in Boston, is trying an experiment to do just that. The project, called OpenNotes, involves 100 doctors at three sites who will allow 25,000 to 35,000 patients to read their physicians’ notes online for a year. The Boston Globe explains:

Researchers hope to learn whether the notes prove more useful than objectionable. They hypothesize that access to doctors’ notes will improve care partly because patients will become more knowledgeable about their treatment and about their doctors’ instructions.

The study is supposed to start by the end of this year. The measure of its success, the Globe reports, “will be whether doctors and patients want to keep sharing notes at the end of the study.”

So what might a doctor write in his or her notes? Dr. Thomas Delbanco, an internist at Beth Israel Deaconess and co-investigator for the study, provided the Globe with some real-life examples:

“Her family is quite well. There are no undue stresses. She feels she is aging gracefully, and I certainly concur! She keeps quite busy, and indeed it is hard for her to slow down.”

“She worries about money, enjoys her hobbies, and is basically doing quite nicely, although she is certainly dependent on narcotics for pain control at this point and is dealing with underlying depression which is not overwhelming but is certainly not making her a happy person.”

“Screening for prostate cancer: He is worried. Discussed that he does have a normal PSA and negative rectal, and as far as we can tell there is no evidence of prostate cancer. Discussed the limitations of our abilities to make predictions…  He says it’s hard for him to deal with uncertainty.”

Unlike radiology reports, lab results and the like, the physician’s notes are often more detailed, offering impressions, summaries and, frequently, judgments or conclusions about the patient. It’s this aspect that has stirred the most intense debate. Doctors aren’t sure they want patients to read things that might be sensitive, open to misinterpretation or cause the patient to lose trust. Many patients, on the other hand, believe they have the right to know what has been recorded about them. The medical record, after all, is crucial to managing their future health.

As is so often the case, the online comments add even more dimension to the Boston Globe’s story. Readers were quick to share stories about mistakes, misdiagnoses and even insults in their medical record.

If patients are to be expected to participate more fully in their care, they need to see their entire chart, doctor’s notes and all, one person wrote.

If what a doctor writes about me is going to affect my medical care (and how could it not) I need to know about it. Doctors are the first to complain about how overburdened they are with paperwork – of course there will be unintentional errors made in a patient’s medical record. As a patient I should be considered partner in my own care, not an adversary from whom a doctor needs to hide information. It’s absurd.

Beth Israel Deaconess is still working on recruiting 100 physicians to join its OpenNotes study. The study’s investigators also plan to set up a physician-only portal, allowing doctors to record “shadow” notes they genuinely don’t want the patient to see. The study will track how often, and for what reasons, the private portal is used.

It’ll be interesting to learn the findings from this study. Will it change the dynamic between doctor and patient? Maybe; maybe not, says American Medical News.

“In spite of a lot of enthusiasm… no one really knows what will happen,” said Jan Walker, RN, an instructor of medicine at Harvard Medical School and the other leader of the project. “What I hope will happen is that not much will happen. Some patients will look at the notes, and there are some patients who may not look at them at all.”

Delbanco, however, hopes it’ll change the relationship for the better. He believes it could help break down the wall that often exists between patients and care providers. “It may promote insight and shared decision-making by bringing closer together the unique expertise of the clinician and the unique understanding of himself or herself that each patient possesses,” he said.

One thought on “Opening up the medical record, part 2

  1. Pingback: Opening up the medical record, redux | HealthBeat

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