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When her husband suddenly got sick, losing strength and weight in June 2023, Kathy Day took him to the doctor, who ordered some tests.

A few days later, the results of those tests – which showed he was suffering from esophageal cancer – appeared in his patient portal, Day said. 

They never heard from the doctor about those tests, she said, and just a few weeks later, her husband was gone.

“The results showed adenocarcinoma, which was tossed in among a lot of other gibberish that I could barely understand, and I’m a nurse,” Day said.

“I fought for (patient portals) … because I think patients need access to their information and can keep track of it themselves,” she added. “But when something like that comes up in a patient portal, that should not be all you get.”

Patient portals such as MyChart allow people to review their own medical records, schedule appointments and refill prescriptions, among other things.

Advocates fought for them for years.

And while it’s not known how often situations like Day’s occur, they have been reported around the country, said Lisa McGiffert, president and cofounder of the Patient Safety Action Network.

One person got a cancer diagnosis in email from the insurance company, she said, and another was tested for HIV without her consent, and though the test was negative, she was at risk of finding a positive result in the portal without a call first. 

“The health portals are really important because they give us access to our results quickly. And this is our information. It belongs to us,” McGiffert said. 

“But it appears at least in some cases,” she added, “these serious diagnoses are falling through the cracks, and nobody is following up with more information about what the patients should do, like schedule a follow-up meeting or appointment.”

Enabling patients to have full access to their medical records – and therefore test results – is a provision of the federal 21st Century Cures Act, according to Caitlin Donovan, senior director for the National Patient Advocate Foundation. It took effect in 2021.

So, patients who’ve opted to get alerts when test results are available get them at the same time as the doctor, she said.  

“When (the Center for Medicare and Medicaid Services) was debating the regulation around this, there was a lot of pushback from the (American Medical Association) and others, with physicians specifically worried that there was a high a probability that a number of patients would see the results before they did and it would cause chaos,” she said.

The AMA supports the idea of patients having access to their information, but believes there are instances when doctors need to withhold sensitive information until they can inform patients about the results. And it is advocating for revisions in the law’s language that would allow physicians such flexibility to prevent physical, mental, or emotional harm.

Enabling patients to see their medical records is a positive development, because that information belongs to them, said Dr. Bruce Swords, chief clinical officer with Bon Secours St. Francis Health System in Greenville.

But as with most global decisions, he added, there can be unintended consequences that can sometimes negatively impact patients, including seeing frightening test results before their doctor has seen them. 

“When patients see those results, it can cause anxiety and until they have a conversation with their physician, a lot of anxiety,” he said. “Sometimes patients will see results that might indicate they have a malignancy before being able to speak with physician.”

Swords said that as an administrator, he learns of these kinds of situations less than once a week. But physicians who see patients every day may get concerning calls from patients fairly frequently, he said. 

Another challenge for patients is trying to decipher complex and unfamiliar medical language that frequently requires a physician to interpret, he said.

Some medical jargon can sound concerning though there’s no reason for concern, he said. But without knowing the context, the patient is left to worry, he said.  

“There are things I know as a health care provider that don’t mean anything, or if a lab is off by one point, it’s not clinically significant,” agrees Dr. Vanessa Diaz, a family physician with the Medical University of South Carolina’s Department of Family Medicine and interim chief medical officer of MUSC Physicians.

“It’s unreasonable to expect folks who are not trained in medicine to … be able to understand what is clinically significant or not,” she said.

Dr. Rebecca Smith, a physician at Prisma Health Keystone Family Medicine, physician lead for MyChart, and physician lead for Cures Act Compliance at Prisma Health, recalls one patient who saw that their sodium was low on a test and added salt to their diet, which was the wrong thing to do.

But it’s a difficult situation that’s bound to happen because patients are seeing a lot of information that can result in confusion and distress, the doctors said.

It’s another case of society not keeping up with technology, said Smith, adding that with so many patients to see in a day, doctors can’t take the time to review results as they come in.

“Most of us review lab results at the end of the day or the beginning of the day,” Diaz said. “There’s not much time in middle of the day, so there’s a lot of time that labs can get to patients before the doctor has a chance to review them.”

The underlying intent of the law to let patients be the owners of their own information is good, she said. 

“We want patients to be our partners and get whatever information they need to coordinate care,” she said. “But there are unintended consequences that we should try to see if there’s a way to amend.” 

The Cures Act does allow withholding of information in some cases, for example misidentification of data, said Smith.

“If we think it’s wrong, we can withhold it while we figure it out,” she said, “if it’s a patient with same name, for example.”

Data also can be withheld at the request of a patient, she said, if they don’t want a parent or spouse to know intimate information, about mental health, for instance. 

Other reasons include risk of physical harm resulting from release of the information, and if a patient is involved in a research trial that requires the data be blinded, but patients give consent for that, she said. 

Violations of the law risk fines of up to $1 million per incident, Smith said.

But the default is that the patient gets the results at the same time as it’s sent to the doctor, she said, adding that 1 percent or less of Prisma patients request the information be withheld.

“It would be ideal if we could give patients more ownership over this and give them the option of how they want to get the lab work instead of the default,” said Smith. “Opting out … is not quite as streamlined.”

The doctors say their hospitals have adopted measures geared to accommodate patients’ wishes.

MUSC has instituted an option for patients to delay release of information so providers have a chance to review it, Diaz said.

“It gives us the opportunity to, if we know we are checking for something a little more sensitive, like cancer, to get to it before the patient gets to it,” she said. “But you have to opt into it. Getting test results as soon as possible is the default. We tell patients … please feel free to wait for our message before reviewing lab work.” 

Diaz also recommends not looking at results on a Friday and risking a worrisome weekend.

“At Prisma,” said Smith, “when we order a test, we have three options – default to immediate release; delay seven days with patient consent to discuss something serious and release it to the patient at that point; and the third is manual release.”

Smith said she’s not sure the law needs to be tweaked, but adds the provider and patient can do a better job of discussing how they’re going to learn about results, especially if they’re not normal or unexpected.

And if there’s a possibility of a serious diagnosis, Smith said she makes sure she has the next steps planned, such as referrals or additional appointments, before she calls because patients want to know what to do next. 

“At the end of the day, it’s a good thing that patients have access,” she said. “I appreciate that it’s good to find out, and not waiting two weeks to follow up.”

While the Cures Act allows physicians to label test results as sensitive and delay the release over a couple of days, physicians may not be anticipating a serious result, so most don’t put in an automatic delay, Swords said. 

And, he said, releasing the information helps prevent results going unread or unrecognized.

The problem isn’t with the portal, but with the doctor not getting back to patients in a timely way, said South Carolina patient safety advocate Helen Haskell.

“The history of the patient movement really began as a quest for information, people trying to get their own information,” she said. “The requirement that patient records be put in the portal is a triumph.”

But doctors just don’t have time to review test results during the day while seeing patients.     

“I’m sympathetic to doctors,” Haskell said. “They’re so overworked.”

Delaying results for a day or so until the doctor has had time to review them is one option, she said.

“But my concern is that information would not be transmitted at all if it were not in the patient portal,” she said. “Mistakes happen. There has always been a history of test results not being followed up on. It’s a failure of the system.”

Donovan said the law is meant to chip away at the idea that providers were gatekeepers of their patients’ information and because people were sometimes waiting weeks to get test results. 

“We started off very firmly on the transparency side of this because we heard from patients that they were not able to access their medical records,” Donovan said. 

“But having listened to the experiences of both providers and patients,” she added, “it makes some degree of sense to … allow providers to (walk) patients through a diagnosis rather than leaving patients to diagnose themselves.”

McGiffert said the patient portal is important, but is not the same as solid medical advice and guidance, and there’s no substitute for talking with a live person. 

“In the old days, when you got a serious result … most people got a call from the doctor saying come in and let’s talk about it,” she said. “One could ask questions, if they’re not completely stunned by that information. A quick follow-up with the doctor is the most important.”

She advises patients to be proactive and immediately call their doctors if they get frightening results or call an oncologist to set up an appointment. 

“When you’re diagnosed with cancer,” she said, “it’s a scramble.”

Smith said that patients should have conversations with their providers about how they will get the results, and that they should bring it up if the doctor doesn’t. 

“Ask the doctor what he’s concerned about. And if he’s thinking it might be cancer, it’s better to have a conversation about this,” she said. “What I usually tell patients when I order … tests is they will appear one by one … and I will call you if there is something of concern.”

Swords agrees that having an informed discussion with the patient beforehand is beneficial.

“My take-home message is …  if you see information that raises questions, contact your physician’s office,” he said. “They want you to be informed, and to hold your hand through whatever you’re going through.”

And he said that patients at Bon Secours who have a known cancer are connected with navigators they can call in real time about any concerning results.

“Results are released every second of every day, and patients are seeing those very likely before physicians,” he said. “We have people in place to help with the results.”

Day, who is a member of the Patient Safety Action Network living in Maine, said that her husband, Michael, had been healthy until that sudden illness. 

They went to the doctor on June 23, and an endoscopy was scheduled for June 30. It revealed a tumor on his esophagus that turned out to be malignant. Results of that biopsy appeared in his portal, she said.

“The doctor said she’d watch her computer for results and call him. She called once before the results were back and went on vacation,” she said. “That was the last time we heard from her. We didn’t know the prognosis for that or the next steps. And he was getting sicker.”

Day, 75, said she didn’t expect to hear from the doctor while she was on vacation, but did expect that someone would be covering for her who would. Instead, she said, she couldn’t get an appointment at that practice with another physician without an urgent consult with her husband’s primary care doctor, who said Michael needed to go to the ER. 

While he didn’t want to do that at first, he got so much sicker overnight that they went the next morning. There, the ER doctor told them he had cancer. 

“There was no discussion, no talk about next steps or prognosis,” she said.   

Day said she asked for a consult from a gastroenterologist, who came hours later. He said the cancer had spread to Michael’s liver and lungs and was terminal, she said. 

He died on Aug. 7, she said. He was 75.

“It was a chaotic, horrible time in our lives,” she said. “It was really frightening.”

Day said she knows of two other people who experienced something similar – one learned he had prostate cancer on his portal.

While she doesn’t want to see portals go away, serious and time-sensitive diagnoses need to be discussed immediately, she said.

“I’ve worked in ERs and doctors’ offices and if we got red flagged results, we brought them to doctor and it was handled right away,” Day said. 

“When I had uterine cancer 10 to 12 years ago, a biopsy was done one day and I call from the doctor the next,” she added. “I still think portals are important, but (physicians) shouldn’t allow the portal to do the job that they should do. Patients go to doctors for consults. Not to read a report on the computer.”