Project Puts Records in the Patients’ Hands

By RONI CARYN RABIN

In an old “Seinfeld” episode, Elaine goes to see a dermatologist about a rash, and is left sitting on the table in the exam room, alone with her medical chart. She opens the folder and almost immediately makes a sour face.

“ ‘Difficult’?” she says, reading aloud.

Let’s face it: We’ve all tried to imagine what the doctor’s been scribbling during our visits, what is to be found in that intimate record of frailties and phobias that we never see, even though it is all about us.

“The medical record is information that really belongs to the patient, but it’s treated like a classified document,” said Susan B. Frampton, president of Planetree, a nonprofit organization based in Derby, Conn., that promotes patient-centered approaches to health care. “It’s symbolic of the power differential in health care.”

Patients have a legal right to their records, though access can prove difficult. What would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them?

A research collaboration called OpenNotes has set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records last month in Annals of Internal Medicine. For patients, at least, this seems to be an idea whose time has come.

The goal, said Dr. Tom Delbanco, a principal investigator of the study, is to engage patients more fully in their own health.

“That’s the great challenge in medicine: getting patients to be more active in their own care,” said Dr. Delbanco, a professor of medicine at Harvard Medical School. “What we’re doing is opening the black box and letting you look inside.”

Ultimately, he and the study’s lead author, Jan Walker, a member of the research faculty at Beth Israel Deaconess Medical Center in Boston, envision a record that is jointly written: with physician and patient input information, with some negotiation about the details and an agreement on how to proceed.

Dr. Delbanco and his colleagues recruited more than 100 primary care doctors who were already using electronic health records to volunteer to share their medical notes with patients. The researchers asked both participating doctors and doctors who declined to join the project about expectations and concerns, and surveyed nearly 38,000 patients.

The patients were from three very different communities: Beth Israel Deaconess, Geisinger Health System of Danville, Penn., and Harborview Medical Center in Seattle.

Doctors were ambivalent about opening their records, concerned that patients would demand more of their time as a result, or be worried and confused, said Ms. Walker, the study’s senior author. But patients were enthusiastic: 90 percent thought they would be more in control of their care if they saw the notes. They weren’t worried about being confused. Most said seeing the record would help them take better care of themselves: They would better remember the treatment plan, understand it and take their medication.

“Knowledge is power,” Ms. Walker said. “A patient goes to the doctor only once in a while, but in between visits, you’re making all kinds of decisions that affect your health every single day.”

Candice Wolk, a 39-year-old mother from the Boston area who just gave birth to twins, is a good example. During her first pregnancy checkup, her obstetrician noticed a dark spot on her back and suggested she follow up with a dermatologist. But in the excitement about her pregnancy, she forgot — until she read over the notes from her visit.

Even before M. D. Anderson Cancer Center in Houston started using electronic medical records, administrators gave patients their paper files to carry from doctor to doctor.

Now, cancer patients say having password-protected access to their electronic records helps them absorb complex information about treatment and follow lab tests.

“It never upset me, except the first time I read about my bones,” said Paul Grabowski, 60, of Houston, who has two forms of blood cancer and has developed bone loss that causes severe pain. “I heard about it from my doctor, but it’s different when you read it in black and white.”

Open medical records can help H.I.V. patients track viral loads and other disease markers, and motivate patients to take their medication, said Dr. Bob Harrington, a professor of medicine at the University of Washington in Seattle who is medical director of the Harborview Madison H.I.V. Clinic.

For indigent patients, access to records may help even more because they move frequently and their care is often fragmented, said Dr. Joann G. Elmore, professor of medicine at the University of Washington School of Medicine and one of the study authors.

Weight is a particularly sensitive topic in records, the researchers have found. Doctors who use the word “obese” in their notes may risk alienating patients.

“It might be better to say the patient is ‘20 percent over ideal body weight’ rather than ‘a jovial obese man came into my clinic,’ ” said Dr. Thomas W. Feeley, head of the division of anesthesiology and critical care at M. D. Anderson, who co-wrote an editorial accompanying the new study.

Further, experts worry about notes being shared with patients who have mental illness or substance abuse problems.

Most doctors do not think that showing patients their records will increase lawsuits; patients may even be able to point out mistakes or omissions. But other concerns remain.

Will physicians’ notes change if they know patients are reading them? Will patients withhold information they don’t want recorded? Will they be more likely to seek a second or third opinion?

The shared medical record, Dr. Delbanco said, “is a new medicine. It’s designed to help more people than it hurts, but invariably it may hurt some patients. Medicines are never perfect.”