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Patients benefit from reading doctors’ notes, study shows

Should patients be able to read the notes doctors write about them? Physicians have disagreed about this issue for years. But in a new study from Beth Israel Deaconess Medical Center, patients reported that opening up notes increased their understanding of their medical problems and improved their compliance with medication regimens.

Despite initial fears about revealing their notes, most primary care doctors in the study said it did not increase their workload, and all 105 physicians continued the practice after the study ended. Results of the research -- which also was conducted at Geisinger Health System in Pennsylvania and Harborview Medical Center in Washington -- were posted online Monday by the Annals of Internal Medicine.


"This is a very simple intervention that holds enormous promise for getting patients involved in their health care, and that's hard to do,'' Dr. Tom Delbanco, first author on the paper and a Beth Israel Deaconess internist, said in an interview.

Dr. Kevin Tabb, chief executive of the hospital, said he is convinced that opening notes is good for patients and plans to have the hospital become the first major academic medical center in the US to do so hospital-wide. He is unsure of the timing because, while the plan has the support of department leaders, it will take time to get rank-and-file doctors comfortable with the idea, he said in an interview.

Tabb said he is impressed that opening notes does not require a "new wizbang gadget'' or "expensive system,'' but uses tools already in place in electronic medical records. "Over time, this will become the standard of care,'' he predicted.

Of the 13,564 patients in the study, 87 percent opened at least one note. Of the 5,391 patients who opened at least one note and completed a survey, 77 percent to 87 percent across the three sites said the notes helped them feel more in control of their care; and 60 percent to 78 percent of those taking medications reported increased adherence. The survey found that 26 percent to 36 percent had privacy concerns.


Most patients felt that doctors should go even further: 59 percent to 62 percent believed that patients should be able to add comments to notes, and one out of three patients said they should be able to approve the notes' content. The vast majority of doctors disagreed with the latter.

After the year-long program, only a few doctors said they spent more time addressing patients' questions outside of visits, up to 8 percent.

Doctors write these one- to two-page comments after every visit, in part to remind themselves of what's happening with a patient's health and in their life, and so other physicians who treat the patient are up-to-date.

But the notes usually aren't readily available to patients because hospitals and doctors' groups fear that they will misunderstand medical jargon, take offense at a blunt observation, or worry unnecessarily about a precautionary test.

In the study, just 1 percent to 8 percent of patients said the notes caused confusion, worry, or offense. For doctors, 3 percent to 36 percent reported changing what they wrote and up to 21 percent reported taking more time writing notes.

Delbanco said he has changed his note-writing, mostly by adding educational content or more context. For example, if he orders a test to rule out cancer, he might add that "it's very unlikely.''


"There are a lot of things about this that are going to have to be worked out,'' said Jan Walker, second author on the paper and a nurse at Beth Israel Deaconess. "There may be technical solutions. If doctors really have to write themselves a (private) note, they can do it somewhere else.''

In an accompanying editorial, Dr. Caroline Lubick Goldzweig of the Veterans Affairs Greater Los Angeles Healthcare System, said more study is needed, including whether opening notes affects health outcomes, and whether doctor-to-doctor communication is hampered by more diplomatic wording.

A Beth Israel Deaconess patient, Michael Meltsner, wrote in a second editorial that "open notes can stimulate a flow of information that leads to greater accountability on behalf of health care personnel, a development that in the end can only improve the quality of patient care.''

Liz Kowalczyk can be reached at kowalczyk@globe.com.