The Responsibility Project^®. Exploring what it means to do the right thing

Who wants to hear that they’re obese, depressed or drug dependent? More people than you might think. A new survey says that at least 90 percent of patients would like to see the notes their doctors write about them during appointments – even if the news is upsetting.

The OpenNotes Project surveyed more than 38,000 people in Boston, Seattle and rural Pennsylvania – most of whom said they would use the information to take greater control over their health or use it as a reminder to take prescription medication. Nearly a quarter said they would discuss the notes with other people, including doctors, to make sure they’re getting the best care.

But doctors aren’t as keen on the idea of sharing their notes with patients; of the 254 doctors questions in the study, most said they think it’s a bad idea.

Dr. Suzanne Salamon, associate chief for clinical geriatrics at Beth Israel Deaconess Medical Center (one of the test sites) told the Harvard Health Letter, “Personally, I don’t like the idea of OpenNotes […] I think that doctors will have to spend a lot of time explaining to patients what they meant if a patient misinterprets. For example, a doctor may see a patient as ‘anxious’ or ‘depressed’ or ‘obese’ or ‘alcohol dependent’ or ‘drug dependant’ and the patient may object, perhaps because they don’t see themselves that way, or perhaps because they don’t want this description in the notes.” She also said that doctors may alter what they say in their notes so as not to upset patients, losing important pieces of information that can help in a patient’s treatment.

On the opposite side of the issue are doctors like Nancy Keating, an associate professor of medicine and health care policy at Harvard Medical School and an associate physician at Brigham and Women’s Hospital, who told the HHL that she thinks the benefits of sharing notes would outweigh any downside.

Dr. Kenneth Shine, an executive at the University of Texas System, pointed out in the Annals of Internal Medicine that some hospitals are already giving patients access to their records (including doctor’s notes) – and having success doing so. Those hospitals have not seen the expected jump in malpractice lawsuits, nor a flood of needless questions. “As we moved toward greater transparency in health care, one emerging concept is that sharing information among patients, caregivers, and involved clinicians can improve efficiency, decrease redundancy, and decrease cost,” Shine writes.

Still, Wall Street Journal health reporter Tara Parker-Pope warns that medical note-sharing is rife with opportunity for miscommunication. Patients may panic if their doctor speculates about cancer or heart disease, and some medical terms can be taken the wrong way. For instance, the phrase “the patient appears SOB” refers to shortness of breath, not a derogatory designation. And OD is short for oculus dexter, or right eye, not for overdose. “NERD” is an acronym for “no evidence of recurrent disease,” and “Shotty” is shorthand for “mildly enlarged lymph nodes” (find more terms here).

What would you prefer as a patient? In the case of doctor’s notes, is ignorance bliss or do patients have a right to be informed?