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MONDAY, April 12 (HealthDayNews) -- If you've wondered what your doctor is writing about you in your medical record, you're not alone: Most patients want to take a peek, researchers report.

Moreover, people who want to know what's in their records are more interested in participating in their own health care and more likely to seek health information from the Internet and other sources.

So says a report in the April 12 issue of the Archives of Internal Medicine.

The study was done to estimate the growing demand for access to medical records as records are made available electronically, said lead author Jinnet B. Fowles, senior vice president for research at the Park Nicollet Institute in Minneapolis.

The Health Insurance Portability and Accountability Act of 1996 guarantees people access to their records, but this won't be practical until records are available electronically, she explained.

"We found that 36 percent of the patients were very interested in reading their own record and another 43 percent were somewhat interested," Fowles said.

To gather their data, Fowles and her colleagues mailed a questionnaire to 4,500 adults who had recently visited a clinic; 81 percent responded.

The main reasons for wanting to read their record were to be more involved in their own health care, to understand their own condition better, and to see what their doctor was saying about them, Fowles said.

"It's a mystery to patients what's in their medical records," she added. Sometimes they want to see if their record matches what the doctor is saying about them, sometimes it's curiosity, and sometimes it's because they have forgotten what the doctor said, Fowles explained.

Patients are also interested in checking for mistakes and figuring out for themselves what their condition is, she added.

In addition, patients for whom health is an important topic, independent of their own physical condition, are more interested in looking at their medical record. "Why not? It's about me. What could be more gripping? It's a whole book about me," Fowles quipped.

As far as doctors are concerned, many favor having patients look at most parts of their medical record, including lab results, medical history and medications ordered, Fowles said.

However, the sticky issue is whether patients should see progress notes, a part of the report patients are extremely interested in seeing, she said. Historically, doctors consider that part of the report not meant for patients to see, Fowles said.

"Doctor are concerned that patients won't understand these notes, or that the patient will misinterpret them," she said. Doctors also fear that seeing these notes will cause a lot of questions to be asked, and some of the language used may seem insulting to the patient and can damage the relationship with the patient, Fowles said.

The reason for these concerns might be a slight case of mistrust, she said. Doctors may feel they can't write down what they think, and patients may feel they're not getting the whole truth, Fowles said.

"If you have anything less than perfect trust in your physician, you become interested in reading your records," she added.

Fowles said all research shows that when patients and doctors share information, communication between patient and doctor improves.

Fowles believes patients should look at their records to monitor and understand their own health. "As we move to more consumer involvement in health care, the medical record is the most vital tool that patients have to understanding their health," she said.

Dr. Thomas C. Rosenthal is a professor in the Department of Family Medicine at the State University of New York at Buffalo. He called Fowles' work "a well done study and we can rely on the results to reflect what the patients really think about reading their medical records."

However, it's disappointing that only a third of patients really want to review their records, he said.

"As expected, this group wants to be involved in their health care in a very active way. So, we might use access to records as one way of motivating patients to take an active role in their management," Rosenthal said.

More information

The U.S. Department of Health and Human Services can tell you more about your right to your medical records. The Privacy Rights Clearinghouse can tell you more about medical records privacy.

(SOURCES: Jinnet B. Fowles, Ph.D., senior vice president, research, Park Nicollet Institute, Minneapolis; Thomas C. Rosenthal, M.D., professor and chairman, Department of Family Medicine, State University of New York at Buffalo; April 12, 2004, Archives of Internal Medicine)

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