September 20, 2014

Push to Explain More, As New Rules Give Patients Direct Access to Routine or Sensitive Results

New federal rules allow patients direct access to lab results, but they don’t always understand them or what to do about them. WSJ’s Laura Landro discusses with Tanya Rivero.

As more patients gain direct access to lab reports and test results, health care providers are offering new tools to help them navigate the maze of numbers and use the data to better manage their own care.

Individual patients now can see their results on a wide variety of medical tests including complete blood counts, urinalysis and allergy tests, under a federal rule that went into effect in April and pre-empted a number of state laws prohibiting disclosure to individuals. The results must be available on request within 30 days, no physician’s authorization required. Laboratories have until Oct. 6 to comply.

The 30-day window provides doctors with time to review sensitive or complicated lab findings and meet with the patient in person to discuss them. For routine tests, though, more labs and hospitals are sending results directly to the patient, in some cases on the same day that the doctor receives them.

Quest Diagnostics, which provides diagnostic information services to about 30% of U.S. adults a year, launched a new secure patient website, MyQuest by Care360, when the federal rule went into effect on April 7. Patients can view their lab results on the site at no charge within 48 to 72 hours in most states, or get them on a recently enhanced mobile app.

Since the April 7 website launch, Quest says it has delivered more than 700,000 lab results to users, four times the number sent in the prior six months.

Experts say patients with direct access to lab tests can spot worrisome results that may be overlooked or delayed at doctors’ offices. Research suggests it is fairly common for abnormal test results to slip through the cracks. A 2009 study in the Journal of the American Medical Association found that communication snafus, including failure to inform patients of abnormal outpatient test results, happened in one of every 14 tests.

Studies suggest that while patients are eager to see their results as soon as possible, they may need help understanding medical terms such “reference range”—which many patients may think of as “normal”—and whether numbers that fall outside the range in either direction are cause for alarm.

Rather than showing patients copies of the raw lab reports typically sent to doctors, Quest now offers graphs and other visual depictions of results for common markers like cholesterol and blood sugar, putting them in relation to reference or normal ranges and including links to more detailed information.

“If we don’t make it clear to patients what these numbers mean, we can’t expect them to know what to do,” says Brian Zikmund-Fisher, a researcher at the University of Michigan’s Department of Health Behavior and Health Education. Without clear explanations, he says, “we are going to evoke anxiety, with patients making unnecessary calls to doctors or not calling doctors when they should have.”

A study led by Dr. Zikmund-Fisher and published last month in the Journal of Medical Internet Research suggested that only 38% of patients with lower health literacy and numeracy skills could correctly identify when levels of hemoglobin A1C—the common measure of blood-sugar control for diabetes—were outside the reference range.

His team is now designing a Web-based application to display blood sugar test results in a format that will be easy to understand when numbers are heading into a danger zone.

Managed-care giant Kaiser Permanente, which owns its own labs and has operations in eight states and Washington, D.C., has since 2008 steadily increased the types of test results directly available to members on its patient portal. In Colorado most test results are released in one or two days; in California they are released immediately.

Doctors may add comments online such as, “This is heading in the right direction.” Patients who need regular testing of, say, blood sugar can chart their results to get a visual display of how well they are controlling their disease. They can email clinicians if they have questions.

In a study published last year in the Journal of Participatory Medicine, Kaiser members surveyed about viewing lab reports online overwhelmingly reacted with positive emotions. But patients whose doctors spoke with them in advance about what to expect experienced significantly more relief, appreciation and satisfaction, and less confusion compared with those who didn’t talk to doctors before viewing the results.

“This information belongs to our members and we want them to have it, but not without a context” says Mark Groshek, a pediatrician and medical director of digital services for Kaiser.

A patient, he notes, may be alarmed to see a urine test result noting the presence of squamous cells, a term often associated with malignancy. In a routine urine test, squamous cells may simply mean the sample contains cells that are part of the normal lining of the urethra.

Sarah Wright-Schreiberg, a Kaiser member in Oakland, Calif., says since being treated for lymphoma in 2011 she has been checking lab results online for frequent blood tests that check for signs of problems or recurrence. She says she appreciates being able to see the results and communicate with her doctor via secure messaging on the website. Sometimes “I didn’t have the desire to talk to another human,” she said.

“It was also a sanity saver that I didn’t have to wonder for days on end what was going on,” Ms. Wright-Schreiberg says. “My experience would have been very different if I couldn’t literally click and see what my blood test results were.”

Ready access to the data also encouraged her to learn as much as she could about what different components of blood meant in her case, she adds, “so I was much more actively participating.”

Now the mother of a 10-month-old daughter, Naomi, and in remission from her disease, Ms. Wright-Schreiberg uses the system to check on routine lab test results, such as cholesterol levels.

Jon Cohen, chief medical officer at Quest, says its minimum of 48 hours before releasing tests to patients is especially important for sensitive tests. A small number of states maintain their own restrictions within the 30-day period under the federal rule. Based on its interpretation of the laws, Quest holds results of HIV testing for five days in Pennsylvania, for example.

Richard Varney, 73, a retired consultant in Morristown, N.J., says he had prostate cancer in his early 60s and later developed osteoarthritis, and blood pressure and cholesterol issues. After that, he says, “I began to realize how important it is to know what blood work is and what the various components are, and importance of monitoring my results.”

Before he began getting results directly from Quest via his mobile phone in 2010, Mr. Varney says he was often unable to access lab tests easily, because doctors were either reluctant or too busy to share them. The enhanced Quest app has more features such as graphic representation of past results for comparison so he can monitor his conditions.

“You have to manage your own health data,” Mr. Varney says. “You can’t expect your doctor who has hundreds and maybe thousands of patients to manage it for you.”


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