Greater Cincinnati woman learns she has cancer via email

WARREN COUNTY, Ohio (WKRC) – Two million Americans will learn they have cancer this year, many by email.

That’s what just happened to Warren County woman Jamie Sweeney. Instead of a doctor analyzing her test results and sitting down with her, perhaps holding her hand and saying, “We’ve discovered what looks like a malignant tumor,” Jamie received a notification MyChart which, for all intents and purposes, said, “Hey, you have cancer.”

“I’m upset, I’m angry. Someone should have called me,” Sweeney said.

She has lived for years knowing that she has “spots” on her lungs. But she said her pulmonologist would simply tell her, “Let’s schedule annual exams and keep an eye on it.” » So last week, when the labs arrived, Jamie received a notification from his electronic medical portal, “MyChart,” informing him that the results had arrived.

But this time it was stated that she had a “growing adenocarcinoma” which needed to be discussed with a “multidisciplinary thoracic tumor committee”.

“What did that mean to you?” » Local 12 asked Sweeney.

“What did that mean to me?” That definitely meant I had cancer,” Sweeney said.

The 21st Century Cures Act is the reason Jamie, and millions of others, learn on MyChart that they probably have cancer. It took effect in 2021. Along with funding research to accelerate the development of drugs and medical devices and improve mental health services, it made medical records immediately available to patients.

“Unfortunately, this means some patients are opening these messages and receiving terrible reports without a doctor first interpreting them,” said Caitlin Donovan of the Patient Advocate Foundation. “I will say, though, that for a long time, patients were frustrated because they felt like the entire medical industry was acting as a gatekeeper to their own information. Now this law is going in the other direction, where there is almost no filter. »

Donovan said there needs to be a stopgap and that certain types of information need to be provided by medical professionals, not left to patients who may not be equipped to interpret the results.

“Jamie, you look scared,” Local 12 told Sweeney.

Tears welled up in her eyes as her husband John sat next to her. He is disabled following a work accident, which seriously impairs his speech and mobility.

“I am,” Sweeney said, “I’m terrified because you know what? I’m not scared for myself, but I’m scared to leave him behind. What’s going to happen to him and who will take care of him?

Local 12 called Epic, the company that owns “MyChart,” and asked a spokesperson if people learn they have cancer by reading test results online.

“Each organization decides how to configure results publishing based on its specific needs,” an Epic spokesperson said in a statement.

Thus, medical groups could choose to withhold certain information in order to transmit it in person. The Epic spokesperson went on to write: “MyChart allows patients to choose whether they want to see their results automatically or wait for their healthcare team to review them. »

So Epic is basically saying if you don’t want to know your results, don’t look at them.

A study published last year in JAMA, the Journal of the American Medical Association, showed that 96% of patients preferred to receive immediately published test results online, even if their healthcare professional had not yet reviewed the results. results.