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You and Your Medical Records

Most People Never Read Their Medical Records, Despite Being Legally Entitled

Medically Reviewed by Brunilda Nazario, MD on April 12, 2004
From the WebMD Archives

April 12, 2004 -- Inside that manila folder may be the most significant story you'll ever read: Your doctor's appointment-by-appointment account of your health -- or at least the attempts to preserve it.

Yet most Americans have never read their own medical records, even though most want to, according to new research. Specifically, a survey of 4,500 adults indicates that one in three people say they are "very interested" in reading their medical records, while 43% said they were "somewhat interested."

So what's stopping them? Actually, nothing.

"Patients are legally entitled to access their own medical records whenever they want to, but many people don't realize they have this legal entitlement," says researcher Jinnet B. Fowles, PhD, of the Park Nicollet Institute in Minneapolis. "There is an assumption by patients that their medical records somehow belong to the health care system and aren't to be routinely shared with them."

Her survey, published in this week's Archives of Internal Medicine, is among the first to gauge the reasons why patients might want to review their medical records. Among the findings:

  • Only one in four respondents had ever seen their own medical records. Those patients were nearly three times as likely as others to be "very interested" in getting this access.
  • The most common reasons why patients wanted to read their records was to see what their doctors had written about them and to be more involved in their health -- each cited by 74% of respondents and edging out the third most popular reason, "to better understand their medical condition."
  • Laboratory results were the most-sought after information, followed by doctor's notes. The least-sought information was past medications.
  • Fewer that half of patients surveyed believed that their doctors would think it was "a good idea" for them to see their records.

"Medical records can be a powerful motivator, reinforcer, and educator. More people should be reviewing them, and all they have to do is ask, or maybe fill out a form," Fowles tells WebMD. "But these results don't surprise me. Even among the significant minority of patients who did read their own records in the past, many didn't realize that they were allowed to.

"There is widespread lack of knowledge of being able to see your medical records. What's interesting is here is a book, and it's about you, and yet you probably haven't read it."

But don't expect your doctor to readily recommend this page-turner.

"Physicians are extremely hesitant to share the progress notes -- the narrative part of a patient's medical records, whereas they rest easier about patients seeing their lab records and medications," says Fowles. "That's because they have not thought of the patients as the audience, and this narrative is written for themselves and other clinicians."

They may also want to avoid conflict with "editing" patients. Fans of TV's Seinfeld might recall the episode in which Elaine discovers her doctor has flagged her medical record with a warning -- "problem patient" -- and tries in vain to steal back her file. But in reality, such in-file notes detailing "non-compliance" might offer the only protection for doctors who treat patients who die or become seriously ill as a result of refusing to follow their medical advice.

Of course, doctors may also want to protect something else -- their patients' egos. Just last week, the Institute of Medicine and the Agency for Healthcare Research and Quality (AHRQ) published reports indicating that nearly half of all American adults lack health literacy skills -- that is, they have trouble understanding medical terms and directions to properly take medicine, describe symptoms, or fill out medical information forms.

"For the 90 million Americans with limited literacy skills, it's tough to read the front page of a newspaper or a bus schedule, much less the complicated documents that go along with being a patient in our country today," John C. Nelson, MD, MPH, president-elect of the American Medical Association, says in a prepared statement.

"More of us are slowing down when we speak to give patients time to understand what they're hearing. We're saying 'high blood pressure' instead of 'hypertension;' using plain English instead of confusing jargon. And more of us are asking patients to repeat the information we give them, in their own words."

Show Sources

SOURCES: Fowles, J. Archives of Internal Medicine, April 12, 2004; vol 164: pp 793-800. Jinnet B. Fowles, PhD, vice president of research, Park Nicollet Institute, Minneapolis. WebMD Medical News: "Report: 'Health Literacy' Low in America." American Medical Association.

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