Oct. 20, 2017 -- Your medical record may contain more than just the facts of your medical treatment.

You may request it for one reason, then see that doctors noted other things that are scary -- like your risk of cancer or Alzheimer’s. Or they might make comments that you may find personal and insulting.

Multiple vague complaints. Noncompliant. Morbidly obese. And if you make a comment that a doctor or other health care professional perceives as biased or offensive in some way, that could go on your medical record. Whether positive or negative, it can follow you without your knowledge.

And some doctors will note those comments.

A new survey from WebMD/Medscape, in collaboration with STAT, found that that 59% of doctors have heard an offensive remark about their appearance in the past 5 years. Of that number, nearly a quarter noted those remarks on a patient’s medical record.

Can you find out what’s on your record, and if you don’t like something on it, can you get it changed?

Your medical record is a medical and legal document. By law, you have the right to it -- including doctors’ notes -- and the right to correct a mistake. But they can be difficult to get. Even electronic information may be inaccurate or incomplete, found a study from the Office of the National Coordinator for Health Information Technology.

That is changing, however. Tom Delbanco, MD, of Harvard Medical School, is the founder of a project called OpenNotes. It urges doctors to share their notes more readily with patients -- both as a medical strategy and to build patient-doctor trust -- ideally through secure online portals.

“We view OpenNotes as a new medicine,” says Delbanco. “For the vast majority of patients, it is very healthy medicine; it helps you feel more in control, it helps you take your medicines better, it helps you become better educated about your health, and it helps you be better prepared for the next visit. The downside is, it may scare the hell out of you.”

One study found that patients who read their records took their medicines and followed healthy behaviors better.

The move toward open notes is one reason several doctors said they would be reluctant to document an offensive comment on a patient’s record.

Savitri Fedson, MD, of the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston, says she avoids making notes if the patient has made an offensive comment to her. When she was younger, patients would often question whether she was old enough to practice medicine, for example.

“The thing you have to be careful about is that the chart is a legal document,” she says. “You try to give people the benefit of the doubt."

Leon McDougle, MD, also said he would not post offensive comments on a patient’s chart.

"One, it doesn’t have anything to do with the treatment plan; two, patients have the right to review their record, so putting something that may not be relationship-building ... would lead to further distancing of that patient and provider," says McDougle, a professor of family medicine at Ohio State University and chief diversity officer at OSU's Wexner Medical Center. "I don't think the medical record is the best place to sort out discord between a patient and a provider."

Misunderstandings can go both ways.

Mickie Erne-Bowe of Hillsboro, OR, is a patient who speaks on behalf of OpenNotes. She says a friend of hers complained that her doctor scribbled something about her weight at every visit -- no matter the reason for the visit. It really bothered her. Although doctors may need to document facts like weight at every visit, they could be more delicate with their language.

“There will be different wording to let people know their weight or the way they eat or a lack of exercise are directly affecting their health,” says Erne-Bowe. “But I think they can put those in kind words.”

Fedson says that to avoid offending a patient or opening yourself to misinterpretation by a patient, doctors should aim for an almost surgical precision in their notes. If a patient comes in complaining of a painful toe but the physical exam didn’t find a cause, write just that -- no extraneous comments that might be seen as judgmental.

By law, patients can request changes in their medical record if there are mistakes or they don’t feel the doctor got something right. Ideally, the doctor would add something to that effect. He can’t change a note once it’s there, though.

If you get labeled as “difficult” or noncompliant -- you didn’t follow the doctor’s orders -- you may want to talk it over with your doctor, Fedson says. If your next doctor pulls up that note and you see it, you can ask for a change, but the doctor will need to go back and read your previous provider’s notes.

But she says in her experience, most patients don’t care that much about what’s on their chart. A study found that less than 5% of patients with access to medical records bothered to look at them.

"Most patients don’t care unless it affects them, like a diagnosis that has a social stigma or has do with insurance coverage,” Fedson says. “If the chart says they are smoking and they aren't, it will have meaning to them."

Show Sources

Savitri Fedson, MD, associate professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston.

Tom Delbanco, MD, professor, Harvard Medical School.

Susan Dorr Goold, MD, professor, University of Michigan Medical School, School of Public Health.

Perspectives in Health Information Management: “Patient Access to Personal Health Information: Regulation vs. Reality.”

Office of the National Coordinator for Health Information Technology: “Improving the Health Records Request Process for Patients.”

American Journal of Medicine: “Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects.”

Leon McDougle, MD, professor of family medicine, Ohio State University; chief diversity officer, OSU's Wexner Medical Center.

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