Pros and cons of sharing doctors' notes with patients

Allowing patients to read their doctors' notes after their appointments could open a Pandora's box, some doctors believe. Patients might take offense at some of what turns up in their records. For example, they may not know SOB refers to "shortness of breath."

Those were among a plethora of concerns researchers heard during the planning stages of the OpenNotes project, which will explore what happens when patients have access to their doctors' notes, according to an article published Tuesday in the Annals of Internal Medicine.

In the demonstration project, more than 100 primary-care physicians and about 25,000 patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health system in Pennsylvania, and Harborview Medical Center in Seattle, will be able to access visit notes online through secure web portals. The physicians will invite patients by email to see their doctor's signed notes after each visit and again, before the next visit.

Researchers found that physicians involved in the project had plenty more concerns, too.

Their biggest worry was that patients calls, letters and emails would be a drain on their time. Others said they felt they would have to censor themselves, omitting important diagnostic and therapeutic comments so that speculations about cancer don't trigger panic. Still others worried that their patients would feel scared, mad, depressed, confused or hopeless after reading the notes.

Dr. Tom Delbanco, lead investigator of the study and a Harvard Medical School professor who treats patients at Beth Israel Deaconess, told the Wall Street Journal that he has started using clearer language, fewer abbreviations and less technical jargon. But he doesn't leave anything out. "If I'm worrying about cancer," he said, "the patient is probably worrying about it more than I am."

Researchers said that asking patients to review the records does have an upside. It can improve patient understanding of their health, help them digest recommendations and get them to follow their treatment regimens more closely. It might even get doctor and patient on the same page and help patient caregivers.

Although a patient's right to review doctors' notes is federally mandated under the 1996 Health Insurance Portability and Accountability Act (HIPAA), few patients have chosen to do so. Some patients are afraid to learn something they would prefer not to know, fearing potential diagnoses might make them anxious, researchers found. More than a few patients expressed concerns that the time the doctors would take to write the notes so that patients could read and understand them would eat into exam and consultation time. Some also worried that easy electronic access to the information could compromise privacy if the EMR ended up in the wrong hands.

To learn more:
- read the Annals of Internal Medicine article 
- read the Associated Press article
- see the Los Angeles Times article
- read the Wall Street Journal piece