New Rule Allows You to Read Medical Results Before Your Doc. But Should You?

Have you received results from a lab test or a scan before your doctor contacted you? You’re not alone. 

People are increasingly able to access health data, such as CT scans, biopsies, radiology images and other medical results directly — all before their doctor has had a chance to review what could often be medically complex information, reports the Wall Street Journal. 

This ease of access to sensitive medical information is due to a rule called the 21st Century Cures Act Final Rule, which was signed into law in 2016. The law is designed to provide patients with seamless and immediate reach to their health information without delay. Typically, patients can access this info from their health portal and even read their electronic health records (EHR) — a digital, real-time repository containing the patient’s entire medical history.

According to the American Medical Association (AMA), the intent is to empower people to manage their health better, have more choices, and provide “much-needed privacy protections” as tech-driven health care rises in popularity. 

While most doctors support this law’s purpose to provide clarity and transparency for patients, many are concerned about the needless emotional harm patients receiving life-altering news might face before physicians can provide clarity. Patients are also most likely to misinterpret medical jargon, especially when they lack context.

“There is tremendous potential for harm with the release of some types of tests to patients without providing some type of clinical context,” David Gerber, M.D., a Dallas-based oncologist told the WSJ. 

Laurette Bennhold-Samaan, 62, was blindsided by devastating news when she logged into her health portal to read her results from a recent scan. The Arlington, Virginia native learned about her invasive ductal carcinoma diagnosis, a type of breast cancer, well before her doctor could relay the upsetting news, she told the WSJ. 

Like Bennhold-Samaan, Dr. Gerber noted in the WSJ report that he’s had patients receive cancer diagnoses and other types of scary medical news over a phone notification or through the portal during a business meeting, or while parents put their toddlers to bed and even in the midst of a rush-hour commute. All of these can trigger a barrage of anxiety without proper resources, support or accurate information on hand. 

“Sometimes the pathology or radiology result can look worse than it is,” Jack Resneck, M.D., chair of the department of dermatology at the University of California, San Francisco, and a former president of the AMA, told the WSJ. “A physician can read between the lines and put it all in context.”

In June, the United States Department of Health and Human Services implemented a final rule on the Cures Act that will penalize healthcare providers or entities including tech companies in charge of disseminating the news directly to patients with $1 million if they violate the law by blocking information. And that’s per violation. 

Authorities began enforcing the law on September 1, 2023.

This puts providers in a very tricky position and at risk of straining the doctor-patient relationship, especially when they need to handle sensitive medical information with nuance and empathy.

Last year, in partnership with the patient-owned Savvy Cooperative, the AMA surveyed 1,000 patients on how they would like to receive medical news. Less than half of patients want their information immediately with or without physician review, the report stated. 

On the contrary, a March 2023 study published in JAMA Network Open found that over 95% of more than 8,000 people surveyed prefer to access their medical results online immediately, even if their doctor hasn’t had a chance to weigh in on them. However, some survey respondents reported experiencing worry after receiving abnormal results. 

“Physicians are not seeking to be paternalistic guardians of patient-owned data—we know that different patients bring different preferences to the equation, and thus we are only seeking the option for rare, brief pauses to respect those preferences and reach out to patients with bad news,” Dr. Resneck wrote in an editorial on AMA.