Falling Into the 'Alice in Wonderland' Google Hole of Cancer Results

Anxious about the results of her recent lumpectomy and unable to sleep, Lisa Koncz reached for her cellphone in the middle of the night.

She saw a new message on her patient portal announcing the pathology report from the tumor that was removed from her breast.

Unable to resist checking her results, she clicked and saw the very news she’d dreaded: Her tumor was HER2 positive, which is often more aggressive. She knew that meant she’d need chemotherapy.

Although her husband was at her side, he was sound asleep. And so she absorbed the blow alone, at 4 a.m.

Two years before her diagnosis — stage 1, lobular triple-positive breast cancer in 2018 at 60 years of age — she would have heard the news directly from her surgeon, most likely in a phone call or at a follow- up appointment.

But as a result of a part in the 21st Century Cures Act — which was signed into law on December 13, 2016 — she was able to see her test results before her doctor before her doctor could discuss them with her.

That is because the information-blocking rule of the federal law requires specific categories of clinical notes created in electronic health records to be immediately available to patients. Those categories include imaging, lab report and pathology report results.

While considered a reform that would give patients their test results in a timely fashion, this portion of the law has frustrated oncologists as patients often are left making sense of their results. In fact, some patients, including Koncz, have learned they have cancer this way.

“The portal itself is a wonderful tool because it provides you with all sorts of knowledge,” she says. “And I think of knowledge as power. The downside is what I experienced.

“I fell right into the ‘Alice in Wonderland’ Google hole,” says Koncz, who lives in Duncansville, Pennsylvania. “The portal can be very daunting and overwhelming because you can misinterpret it. And you are getting that information before your doctor can talk you off the ledge.”

Sheer Volume

Oncologists are unable to quickly interpret a patient’s test results because of the number of patients they see in a day, according to Dr. David Gerber, a lung cancer specialist at the Harold C. Simmons Comprehensive Cancer Center in Dallas.

For instance, Gerber notes, an oncologist may get hundreds of test results a day, all while juggling in-person appointments with two dozen or so patients. And there isn’t enough time to interrupt those appointments to personally notify a patient of their lab results as they come in.

By contrast, a patient is naturally interested in results for only one person: themself. As a result, many patients will read their results before their doctors do.

Gerber was one of the first to flag this problem in a 2021 article in JCO Oncology Practice, an American Society of Clinical Oncology journal.

“Radiology and pathology reports are not written with a patient audience in mind,” he wrote. “They may contain bewildering and misleading language, or transcription errors. Confusion and unnecessary distress result.”

What patient could grasp the meaning if a test reported “ground-glass opacities” or “guarding rebound bruits?” How about finding “without vegetations” or “d-dimer” levels?

“It’s excruciating,” Koncz says about reading pathology reports throughout her breast cancer experience. “You’re picking out words, Googling words, which to the layperson sound horrible, but to a radiologist would be, ‘We see this all the time. It’s nothing to worry about.’ And that’s where we get in trouble as laypersons.”

While rewriting medical reports for the layperson might be tempting, it is not the solution, according to Gerber. Medical practitioners use their own precise language to communicate with each other. Words that seem mysterious to the average person are vital in the world of oncology. Gerber likened it to the specialized, highly technical language of the aerospace industry. “It serves a purpose,” he said.

72 Hours

The drawbacks of the information- blocking rule from the federal bill — which mostly dealt with spending more money on cancer research — were so obvious to Dr. Susanne M. Arnold and colleagues that they successfully petitioned Kentucky legislators to pass a law giving doctors 72 hours to post test results involving cancer or serious genetic abnormalities.

“Terminal illnesses shouldn’t be discovered alone,” they wrote in an essay published in Oncology Practice. “Now, in Kentucky, they won’t be.”

Now, in Kentucky, oncologists and other physicians have time to interpret test results, consult their colleagues and come up with a treatment plan or a clinical trial before telling someone they have cancer. They also have the option to release results more rapidly in the case of normal results.

“We really had no opposition,” Arnold, associate director of clinical translation at Markey Cancer Center in Lexington, Kentucky, recalls. “Everybody had a story about someone hearing about their cancer diagnosis or recurrence alone or on a weekend. And nobody thought that was a good idea.”

Short of state-by-state actions, however, there are no easy fixes.

While some have suggested institutions could post good news quickly but institute a short delay for bad news so a doctor can inform their patient personally, that isn’t practical, Gerber says.

The first obstacle is that for some patients with cancer, what may look to be an alarming scan result might actually be an improvement. A result showing nine lesions could be welcome news or devastating, for example, depending on whether the last scan showed fewer or more.

A radiologist wouldn’t necessarily know that if tasked with deciding what news is “good” or “bad.”

The second problem is that any institutionally imposed delay would quickly start to have its own meaning.

“If it’s good news, (patients) want to get it fast, electronically. But if it’s concerning, (patients) want to hear from a person first,” Gerber says. “If we released good news automatically, but didn’t release bad news, pretty soon everyone’s going to figure out, ‘I had a scan yesterday and I didn’t hear the result yet, so it must be really bad.’”

In Certain Instances, Wait

Implementation of the law prompted Summit Health, a mega-practice of more than 2,800 providers across five states, to inform patients about the new law. Its message went so far as to suggest that in some cases, patients might want to avoid reading messages from the lab entirely until contacted by their doctor.

“This is an especially impor- tant consideration late in the evening or on a Friday,” the letter continued. “This can make the evening or weekend very stressful.”

Obstetrician-gynecologist Dr. Christine Masterson, who serves on the Cures Act committee at Summit Health, said the company realized that patients might now get information they didn’t understand or even stumble upon an unexpected cancer diagnosis.

At the very least, patients needed to be warned of that possibility.

The portal problem has changed how she practices, she said. In the past, when ordering a biopsy to rule out an unlikely case of cancer, she might not have even mentioned that as a possibility. Now, however, she explicitly tells patients, “I’m doing this to rule out cancer,” so they can brace themselves for the remote chance that’s what results will show.

“I try to set the stage so that they at least have some prepara- tion if they’re going to open the email,” she says.

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