If you saw that your doctor had written "SOB" in the notes he took during your latest office visit, you might be offended and wonder what you'd done to give him such a negative impression. But "SOB," in physicians' shorthand, simply means "shortness of breath."
Concern about such misunderstandings is one of several reasons doctors are reluctant to share their notes with patients, according to a study published in December in the Annals of Internal Medicine.
The study surveyed 173 doctors and nearly 38,000 patients at primary-care practices about sharing information with patients. After the survey, the practices joined a project called OpenNotes, in which patients were give electronic access to their files.
Although federal law guarantees patients the right to examine and get copies of their medical records, providers haven't always made it easy to do so. But the movement to give patients direct access to their health information has picked up steam, and policymakers have encouraged it as a way to empower patients to help manage their health and their medical care.
Making lab test results available directly is more common, but it's not routine, either. Just seven states and the District explicitly allow patients to get test results directly from the lab, and seven others permit it with provider approval.
Last fall, the Department of Health and Human Services proposed a rule giving patients in every state direct access to their lab test results. A comment period ended in November, but there’s no date set for release of a final rule, according to a spokesperson for the Centers for Medicare and Medicaid Services, which would release it.
Patients don't share clinicians' ambivalence about getting direct, easy access to their health information. No matter their age, education or health status, more than 90 percent of participants in the OpenNotes survey said they thought being able to see doctors' notes was a good idea.
"In a way, that was the biggest surprise of the study," says Jan Walker, the study's lead author. Walker is a nurse at Beth Israel Deaconess Medical Center in Boston, whose practice participated in the study along with those at Geisinger Health System in rural Pennsylvania and Harborview Medical Center in Seattle. "It reflects consumers' universal interest in their own care."
In 2010, Quest Diagnostics, a large lab services company, introduced a free smartphone application called Gazelle that lets consumers in 33 states and the District download their lab test results directly. Since then, 125,000 patients have used the service, the company says. "[Gazelle] will help you have an educated conversation with your physician," says Jon Cohen, chief medical officer for Quest.
John Hadley downloaded the Gazelle app to his iPhone after he developed deep vein thrombosis and was prescribed a blood thinner to help prevent another blood clot. At first, Hadley had to get a blood test every few days so his physician could adjust the medication dose if necessary; now he's tested every few weeks.
Gazelle let Hadley, 53, track his results and make adjustments to his diet if they started to drift. (Foods high in Vitamin K can affect the ability of blood to clot.)
"It's my health and my results, I should be able to get them as easily as possible," says Hadley, IT manager who lives in Parsippany, N.J.
Giving patients direct access to their medical information may also help catch physician errors and omissions, say experts.
Walker says she has heard of patients in the OpenNotes project who have reviewed their doctor's notes and realized that a test the physician called for hadn't been ordered. Even more troubling, studies have indicated that as many as a quarter of abnormal test results don't receive timely follow-up. If patients can look up their results online, that figure might decline.
On the other hand, increased patient access "has the potential to diffuse responsibility" for following up on test results if patients and their doctors both expect the other to check on the results, says Hardeep Singh, chief of the health policy and quality program at the Houston Veteran Affairs Health Services Research and Development Center of Excellence.
Many clinicians are troubled by the prospect that patients may get bad or confusing news without a physician or other health-care provider on hand to help put the information in context.
Patients who use the Gazelle app can't get direct results on HIV, cancer or genetic diagnostic tests, says Cohen. There's a 48-hour delay on releasing all other test results, to give physicians a chance to contact the patient and discuss the findings first.
Likewise, patients who participated in the OpenNotes project can't access the visit notes until their physician has signed off on their release.
"No one wants to see their diagnosis of cancer on their own without a medical professional," says Jonathan Darer, chief innovation officer for Geisinger Health System, which makes most patient information available online. "We try to manage that."
At the same time, however, it's important to ensure that patients get information promptly. "Not knowing is incredibly anxiety-provoking," says Darer.
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