As Health Files Go Digital, Patients May Spot Unpleasant Surprises

Kaiser Permanente makes lab results available to its insurance members online, but decided to eliminate warning flags, like those illustrated above, when patients began complaining that they caused unnecessary alarm.

When Kaiser Permanente started giving patients online access to their medical records nearly five years ago, it offered the same lab reports doctors saw—complete with warning flags highlighting any abnormal results.

The capital letters – such as “H” for “high” -- alarmed many patients. So now the giant health plan has modified the policy for most of its members. It displays lab results in a more neutral way, showing patients how they compare to normal ranges and advising them to contact their health practitioner with any questions.

The experience at Kaiser reflects the sensitivities that can arise over how much medical data patients should be entitled to view and how quickly—a debate that’s intensifying as medicine enters the digital era.

Federal officials hope to create a digital medical record for every American within the next five years and are set to use from $14 billion to $27 billion in stimulus money to help doctors and hospitals adopt the systems. One goal is to “provide patients and their families with timely access to data, knowledge and tools to make informed decisions and to manage their health.”

To that end, doctors receiving stimulus money starting next year must be able to give patients electronic copies of their “health information” in as little as 48 hours after an office visit, according to draft regulations issued in late December.

But the proposed rules don’t specify precisely how much detail doctors and medical systems are obliged to report. Lack of agreement on this issue, and others, suggests a bumpy road ahead as patients begin to assert control over records that thus far have remained almost exclusively in the custody of medical providers.

Many health analysts and physicians say the new regulations are open to interpretation, even the term “health information” itself. “There’s no definition of what a medical record is,” said Steven E. Waldren, a doctor who specializes in health information technology issues for the American Academy of Family Physicians.

More fundamentally, some doctors feel that disclosing too much material without a full explanation of what it means may needlessly upset people and potentially do more harm than good.

“Sometimes information without context is more confusing to the patient,” said David Ford, associate director for medical and regulatory policy with the California Medical Association. Doctors should be able to “filter it in a way that’s beneficial to the patient,” he said.

Lab findings that fall outside the norms, for instance, may in fact be normal for some people, said Waldren, of the family doctors’ group. “You’re going to have a lot of abnormal results on paper that don’t mean anything. Some patients will be freaking out,” he said.

Many doctors also question the wisdom of releasing notes of their observations about patients as part of the medical file, at least without first having time to thoroughly review sensitive portions.

By contrast, consumer groups argue that patients generally should view the same records their doctors do. Exceptions, said Consumers Union official Steve Findlay, might revolve around mental health problems or other highly sensitive ailments. Most doctors would want to tell their patients of a cancer diagnosis in person and not have them discover it by logging on to their health plan’s Web site, for instance.

“This is an area where there’s no set policies yet. That’s part of the problem at the federal level, “ said Findlay, who also serves on a government panel that helped set standards for use of digital medical records.

“The confusing thing here is that most of what doctors write down in a medical record isn’t that useful to a patient without assistance to interpret,” Findlay added. “This is one of those areas that everybody is thinking through.”

How patients might read—or misinterpret—lab results caused Kaiser Permanente to backtrack on full disclosure.

A national leader in digital record-keeping, Kaiser granted patients online access to their medical records as far back as 2004. Lab reports are among the files most accessed by its more than 8 million members, who in 2008 viewed over 16 million of them online, according to Kaiser officials.

At first the health plan included the warning flags its doctors see. But it changed the practice in California -- where most of its members reside -- and in some other regions after hearing from concerned patients. It now lists only the normal range and the patient’s value.

Kaiser spokeswoman Trish Doherty said the health plan “started out showing the flags, but where it's been a concern to our members, we removed them.”  She said that Kaiser had not received complaints about the change.

“Physicians will still communicate with patients about out-of-range test results, by visit or phone, letter or e-mail, helping them put the results into context for their particular clinical situation,” Doherty said.

Yet the policy change disturbs Kaiser member Robert Finney. He’s a former health cost containment manager from Encinitas, Calif., and a critic of managed care plans.