I am a primary care pediatrician who often hears from friends or relatives when they get bad or confusing medical news. Recently, a call came late on a Friday from someone who had just checked a test result in her MyChart account, a widely used electronic patient portal, and learned she had cancer. The weekend was starting, she wouldn’t be able to discuss the news with her doctor until Monday, and she spent the weekend reading and rereading her report and anxiously searching the internet for information.

Experiences like this have become common since April, when a provision requiring the release of patient medical information was put into full effect as part of the 21st Century Cures Act. This legislation, originally from 2016, was a bipartisan effort to assure that doctors and hospitals would share with patients (at no cost) several types of medical records and test results. While this may sound like a small step toward openness, it actually represents a sea change in the way doctors and patients communicate.

To be sure, doctors and health-care groups should always be willing to share health information with patients. Research has found transparency can strengthen doctor-patient relationships, and providing accurate information in a timely manner helps empower patients to improve their self-care.

But there are two problems — both rooted in the traditional practice of medicine: First, most providers write their lab and exam findings and other notes so that other medical professionals can understand them. That’s the point of most charts: to communicate complicated information among trained caregivers and billers. Patients, especially those with lower literacy, cannot easily interpret this language. Only one part, the after-visit summary, is written to and for the patient. Also, many patient portals aren’t available in Spanish or other languages, further limiting their accessibility and increasing health disparities.

The second problem is that laboratories often share test results before providers have a chance to review them in the context of the patient’s history and exam. During an appointment, most of us explain to patients what diagnoses we’re considering and the tests we’re ordering and why. But that context may be lost when the patient sees scary results. A family member of mine once called at midnight to tell me he had a low “anion gap.” (He pronounced “anion” with the accent on the second syllable, so it took me a minute at that hour to even figure out what he was talking about.) Anion gaps are calculated values on electrolyte laboratory reports. They need to be interpreted in the context of other lab values and kidney function, and they’re generally concerning only when high. Those that are just barely out of normal range (as his was) can be utterly harmless. But try telling someone that a “gap” is something that’s OK to have. Even the common medical use of the phrase “negative results” to mean not having something bad (such as an infection or cancer) can trip up the average lay person, for whom “negative” often implies “bad.”

It’s a problem that so much of medical documentation can be understood only by the initiated. Medical language needs to be revised so that patients can comprehend it. More infographics should be employed to amplify communication. Translation should be available for those who don’t read in English.

OpenNotes, an initiative started by medical systems in Boston, rural Pennsylvania and Seattle that allowed 13,500 patients to see notes written by their doctors in a secure patient portal, measured the difficulty of this challenge. While patients had mostly positive things to say about their experiences, up to 8% said the notes “caused confusion, worry or offense.”

OpenNotes, along with other calls to action, spurred the Cures Act provision on medical records that was ultimately carried out this year. But research on these tools remains limited. Getting all practitioners in the U.S. to create comprehensible open notes and reports of results will be a heavy lift.

In the meantime, how should the health-care system proceed? As always, first do no harm. Many health-care systems block the release of lab or test results from certain units including pathology until doctors talk to the patients involved. All should do this without fail.

Certainly, too, we providers need to do a better job of explaining to patients what tests we order and why. And we need to be available to explain and answer questions when scary results come in. Important in this era of primary-care physician burnout, providers need to be reimbursed for the significant hours that appropriate and sensitive patient-portal communication demands.

In the process, protections are needed for doctor-patient confidentiality. As a pediatrician who treats adolescents – who trust me to keep their conversations private – I see the importance of assuring that parents don’t read sensitive and revealing notes.

Part of the challenge will be to increase patients’ understanding of health-care concepts. More than one-third of American adults have low health literacy, according to the Center for Health Care Strategies, Inc. This not only makes charts difficult to understand but also leads people to make poor decisions about their own care – which in turn significantly raises the cost of health care. Research from my colleagues at Johns Hopkins University shows that innovations in the electronic medical record can improve patients’ abilities to engage with their health care through self-management of chronic illness and the like.

The 21st Century Cures Act had the right intention, but it has come into effect before the health-care system was ready. Now, action is needed to make sure transparency leads to better health, not greater confusion and anxiety for patients and burnout for providers. Only then can the legislation achieve its ambition.

Eliana Perrin is a Bloomberg Distinguished Professor at Johns Hopkins University School of Medicine and School of Nursing.


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