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Woman learns she has cancer through email, wants situation to be lesson to others

The 21st Century CURES Act permits allows information to be posted immediately.
A law was passed last year that helps patients receive health information fast.
Published: May. 18, 2022 at 7:22 PM EDT
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FORT MILL, S.C. (WBTV) - A new law enacted a year ago is getting your health information to you even faster.

But for some, like Jennifer Duffy, it is coming with the consequences of finding out earth-shattering news before a doctor even has the chance to call.

It is not news people would think could come straight to your phone before your doctor even has a chance to see it. However, this new rule is giving cancer diagnoses, miscarriage results and more health information that, in the past, would be coming from your doctor.

For Duffy, her all-about-pink attitude is not just for show.

”When I was 13 my mother was diagnosed with breast cancer,” she said.

Duffy’s mom was diagnosed with an extremely aggressive breast cancer called inflammatory breast cancer. She died just two years later at age 38. Duffy was only 15 years old.

”My goal was to outlive her when there wasn’t a cure for it, and I was in my 30s and my biggest fear has always been since I was 13 that I would get breast cancer,” she said.

Because of her family history, Duffy’s been getting mammograms much earlier than the average person.

”If you hear anything about breast cancer you think going to die,” she explains.

A law enacted last year requires healthcare providers to immediately upload test results to online portfolios.

She got the biopsy done at Charlotte Radiology inside Atrium’s Uptown hospital campus. Three days later she was emailed her results without ever hearing from a doctor.

“I didn’t think I had to worry I have cancer because that’s not how you find out you have cancer,” Duffy said.

Unfortunately, that is exactly how she found out she had cancer. At a gas station all alone.

”My whole world just changed,” she said. “I had my dog in the car and a bunch of strangers around me pumping gas. And I was just in shock.”

After multiple calls to several doctors, she found out her doctors had not even seen the results yet. A person she talked to said they would “find out” who was supposed to call her, according to Duffy. But a rule inside the 21st Century CURES Act requires her to get lab results as soon as it is posted, which no one told her.

It is called ‘Information Blocking.’ It requires healthcare providers to give patients access “without delay” to their electronic health information, including lab results.

Both Atrium and Charlotte Radiology quoted the rule in their statements to WBTV for why this situation happened. This rule was strongly opposed by physicians when the CURES Act was enacted in April 2021.

In a letter sent to the U.S. Department of Health and Human Services, medial nonprofit group American Medical Group Association said giving immediate results would cause “patient harm.”

A year-and-a-half-long study from Vanderbilt found when patients did not get immediate results, only about 10 percent learned their results before a doctor called them, compared to 40 percent when they got the results immediately.

”There’s nothing that excuses the failure to put the interest of the patient first,” attorney Meg Maloney said.

Maloney said doctors should always warn patients they could get their lab results before the doctor has a chance to look at them.

”It’s just really, it’s bad practice,” she said.

But to avoid the situation Maloney says you need to be an advocate for yourself.

”I would have the patient ask when, how and by what means am I going to get the results of my test.”

Atrium told WBTV in a statement that patients can consent to having their results withheld until they can speak to a physician. Read the full statements from Atrium and Charlotte Radiology below:

Atrium Health:

Atrium Health, along with all other health care organizations in the United States, is mandated to comply with the Information Blocking Rule under the 21st Century Cures Act. As of April 5, 2021, patients are to be given access “without delay” to their electronic health information. This includes new information that comes through their patient portal. Atrium Health providers have discussions with their patients about testing that is done, including the potential for difficult and undesirable results.

Unless the patient consents to having their results withheld until they speak with their physician, all results post immediately to their electronic health portal. Because of the speed of technology and the way the law is worded, release of medical results may occur before their physician has had the chance to review and consider treatment options or talk to the patient. Atrium Health encourages patients to receive test results in person and on the phone as quickly as possible. Next steps related to their personalized treatment plans are always part of that conversation.

Charlotte Radiology:

Charlotte Radiology has a longstanding process of providing pathology results to our patients via personal telephone notification and consultation. However, as of April 5, 2021, the 21st Century Cures Act requires healthcare organizations to release health information to patients “without delay” when it becomes available. Due to this requirement and the automated interfaces between electronic systems, patients may receive information electronically before their physician or healthcare professional can review it and contact them personally.

We regret any instance in which a patient learns of their results through their health information portal rather than directly from a healthcare professional who can explain the circumstances and offer guidance on next steps. We continue to take steps to inform patients about health information accessibility and encourage patients to have conversations with their providers about their preferred timing and communication channels for receiving personal health information and test results.

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