Writing for The Incidental Economist, Bill Gardner shares how a CT report for his throat cancer posted to an online patient portal wrongly indicated he also had lung cancer, a shocking, distressing error that took hours to resolve—and highlighted several serious issues with the state of health care communications.
Gardner has been blogging about his experience as a cancer patient amid the Covid-19 pandemic in the Canadian health care system since July 2020, when he was first diagnosed with throat cancer.
While had been seeking help for difficulty swallowing and other symptoms for several months, Gardner writes that it wasn't until he started coughing up blood that he was taken to an ED and formally diagnosed with a "p16 positive, oropharyngeal, squamous cell carcinoma" measuring about 5 cubic inches—likely caused by HPV, Gardner writes, that he probably contracted while a young adult.
According to Gardner, he had several treatment options—including surgery, chemotherapy, and/or radiation—but he and his care team ultimately decided on radiation alone, which would give him an estimated 80% five-year survival probability. Gardner said both he and his care team opted against the other options because they considered surgery an inefficient way to remove the cancer (especially given the necessary removal of "significant parts" of his throat and tongue), and because Gardner himself was wary of chemotherapy-induced cognitive impairment, which he believed could affect his ability to work.
Overall, Gardner underwent 35 rounds of radiation sessions, with the last session on September 18, 2020.
Planned follow up
Because radiation damages not only the targeted cancer but also the surrounding tissue, Gardner writes that he had to wait until nearly 10 weeks after his final radiation session—until Dec. 21, 2020—to get his follow-up CT scan. That delay would give his "healthy" tissue time to recover, enabling the CT scan to get a better read on the cancer itself.
A couple weeks later, on Jan. 11, Gardner writes that CT scan results were posted to "MyChart, the patient portal to the hospital's electronic health record (EHR) system." Gardner says he was eager to review the results to see how effective the treatment was—but he wasn't expecting what he found: A note about his previously unheard-of lung cancer. "There is almost a complete resolution of the primary right lung base tumor with a small residual hyperdense area measuring 10 x 12 mm" the notes read.
And it wasn't the only mention; Gardner says the term "lung cancer" was also cited in another place in the report.
Upset and stressed, Gardner tried and failed to reach his oncologist. Then, he tried the hospital's Patient Relations team, who managed to get in touch with the radiologist who had taken the scans. According to the Patient Relations team, the radiologist was "deeply sorry," Gardner writes. "Apparently, the speech recognition application that transcribed his dictated report misheard 'lung' for 'tongue.' I did not have a lung tumor."
The following day, Gardner heard from his oncologist who reiterated the radiologist's apologies, and shared that the news was mostly positive. However, he said Gardner would eventually have to have a PET scan to determine the status of the potential residual cancer.
According to Gardner, the misadventure confirmed his "impression that the health care system has yet to establish an effective way for caregivers and patients to communicate except through in-person, video, or telephonic visits." He explains, "I've not been successful in getting questions answered using the Cancer Centre's Patient Support Line. And so far, MyChart has mostly wasted my time or misled me."
That said, Gardner acknowledges that sweeping critiques such as his own aren't necessarily productive. Rather, we need to identify "specific problems and fi[x] them."
For Gardner, that boils down to recognizing that the "mistranscription of my CT report was a significant error," one that not only scared Gardner and his family, but could have also "misled a caregiver who need to learn about my health from my EHR."
However, he acknowledges that such errors are a fact of life and what's needed is a process to address them. In his opinion, since he hopes any potential solution would not put additional documentation burdens on providers themselves—or require "scores of human proofreaders"—Gardner writes that the solution "many be an automated system that can efficiently screen medical communications for logical coherence and consistency with data in the EHR."
Noting that the mention of lung cancer was clearly anomalous, Gardner writes, "I certainly don't want a robot that autocorrects CT reports. But I do want one that can register surprise when something unexpected happens" (Gardner, "Cancer Journal: WTF, I have lung cancer?", The Incidental Economist, 1/27; Gardner "'I have serious news': A cancer patient in the COVID-19 epidemic," The Incidental Economist, 7/8/2020; Gardner, "Chapter 2: Playing for real money. In which I meet my tumor.," The Incidental Economist, 7/13; Gardner, "Treating cancer: So many decisions," The Incidental Economist, 7/12; Gardner, "Radiation Therapy for Cancer: What's It Like?", The Incidental Economist, 8/13).