As more patients access health records online, many come away confused, scared or misinformed, experts say

Olivia Brignati often gets the results of her medical tests online — and before she sees her doctor.

The 22-year-old from East Northport is like a growing number of Americans who, by way of a 10-year-old federal law, are accessing their health records using relatively new apps like MyChart or artificial intelligence, and without consulting a medical professional.

Brignati told Newsday outside a pharmacy this week that for her at least, it can be better not to know, unless her doctor is doing the explaining.

"I feel like the doctor should definitely tell you before you get the MyChart result," she said, "because then my brain always thinks the worst, personally."

Immediate benefits

More than two-thirds, or 68.6%, of people polled reported viewing their test results online before speaking to their doctor, according to a study released Tuesday by researchers at NYU School of Global Public Health in Manhattan and published online on JAMA Network Open.

Having immediate access to test results can have benefits, such as empowering patients to feel more in control of their healthcare, medical experts said. But there is also a downside, when people who don’t have medical degrees jump to conclusions that aren’t accurate.

Some medical professionals call it "Dr. Google" or, more recently, "Dr. ChatGPT" — patients scouring the internet to try to figure out what their test results mean.

"It’s an increasingly common and real issue in modern healthcare," said Dr. David Hirschwerk, vice president and chief medical officer at Northwell Health’s North Shore University Hospital in Manhasset. "Results are being made available to patients often before their doctor has had a chance to review them."

'Double-edged sword'

Dr. Robert Gluck, an associate professor of nursing at Hofstra University, agreed that online test results are a "double-edged sword."

"On the bright side, we want people to engage … and increasingly so, because the healthcare system is a behemoth, it’s dysfunctional in lots of ways," Gluck said. "We want people to advocate for themselves, and part of that is being informed."

The "underbelly" is that "any given test result, whether it is lab studies, imaging or whatever, it needs to be contextualized within the larger patient history," he said. "Too often that is not done."

"You can’t just look at an isolated result … and draw conclusions," Gluck said. "It’s very dangerous. And it happens too often. It’s sort of a short cut, but it doesn’t work real well."

He added: "AI is even more seductive in terms of people thinking they are getting all the answers."

Patients now receive test results electronically as soon as they are available because of the 21st Century Cures Act, a national law enacted a decade ago. "As a result, many see their results before their provider," NYU said in a statement.

Poll results

Using information gathered by the National Institutes of Health, the NYU researchers examined responses from 4,982 people who had access to their electronic medical records and received a test result in the past year.

"Those who immediately viewed results were more likely to be older and female, and have a higher income, multiple chronic health conditions, higher digital literacy, and greater use of health-related social media," NYU said.

The study also found a wide range in how well people understood the test results. About 6.6% said they had a poor understanding, 26.8% understood the results fairly well, 31.7% understood them well and 34.9% understood them very well.

While health systems give patients their results, "that does not mean that they put a lot of effort into making the information easy to understand on your own," study author José Pagán, professor and chair of the Department of Public Health Policy and Management at NYU School of Global Public Health, said in a statement.

Better communication needed

The systems need to do a better job in communicating tests results, possibly "using AI to summarize test results in plain language and provide easy means for follow-up questions," he said.

Northwell’s Hirschwerk said that "timely access to test results is very good for patients and helps to empower them. But, as the study pointed out, some individuals may view complex or potentially concerning information before speaking with their doctor."

Gluck said another downside is a breakdown in the doctor-patient relationship.

"It’s kind of quaint to talk about that, but it’s very real. It’s been under assault for a long time," he said, partly because of the involvement of insurance companies and other third parties.

"That doctor-patient relationship gets infringed upon at our own peril, and this is just one more thing," he said.

Sometimes test results can be wrong, he added, or it may not be the right test.

Brignati said her doctor does not always call to discuss her results, leaving her to interpret them on her own.

When a result concerns her, Brignati said, she sometimes reaches out to her doctor for clarification. She has occasionally assumed the worst about a result, Brignati added, only to learn that her interpretation was incorrect.

"If I think it’s really important, then I’ll reach out to my doctor, and then they’ll usually tell me what’s up," she said.

Immediate access can help, said Brooke Sophia, of East Northport, a registered nurse at NYU Langone Hospital – Suffolk in Patchogue, but can also lead patients to worry unnecessarily.

"If they don’t understand or interpret the medical terminology of the exam, then they might self-diagnose before the doctor can explain what’s going on," Sophia said. "People then worry if they’re self-diagnosing themselves with something incorrect or they can’t interpret it correctly because they don’t have a medical background."