Patients Rush to Look at Test Results, but Many Don’t Understand Them

Most people look at their medical test results online before they hear from their doctor, but a fair number don’t fully understand the information and what it means for their care, a nationally representative cross-sectional study suggested.

Among nearly 5,000 survey respondents, 68.6% viewed immediately released test results before hearing from their healthcare practitioner, according to Jemar Bather, PhD, of the NYU School of Global Public Health in New York City, and colleagues.

Of those, 6.6% rated their understanding of the results and what they meant for their care as poor, while 34.9% said they understood very well, 31.7% said they understood well, and 26.8% said they understood fairly well, the researchers reported in JAMA Network Open.

A poor comprehension rating was associated with living in the Midwest or South and experiencing medical care discrimination, while greater patient-centered communication and higher digital literacy were associated with a lower prevalence of poor comprehension.

Overall, being able to see the results as soon as possible is a good thing, said study co-author José Pagán, PhD, also of the NYU School of Global Public Health. “I think everybody should have access to that information in the most transparent way, and health systems should not only provide the information but make sure it doesn’t generate more excitement than necessary,” he told MedPage Today in a phone interview. “It’s a twin responsibility — providing it and making sure [it’s done] in way that people can understand it.”

The 21st Century Cures Act requires that test results be released to patients in their patient portals as soon as they’re available, the authors noted. To see which factors might affect how soon patients looked at their results and how well they felt they understood them, the researchers used the 2024 Health Information National Trends Survey, which is a representative national survey of U.S. adults.

The sample was restricted to individuals who had been offered online access to their medical records by a healthcare practitioner and reported having a medical test within the past year. Outcomes included viewing immediately released test results before hearing from a healthcare practitioner and self-rated understanding of what those results showed and what they meant for the patient’s care.

A total of 4,982 respondents were included, 51.5% of whom were female. In all, 62.2% of respondents identified as non-Hispanic white, 13.2% as Hispanic, 10.2% as non-Hispanic Black, and 4.6% as non-Hispanic Asian.

Older age, female sex, higher income, greater number of chronic health conditions, higher digital literacy, and greater health-related social media use were associated with viewing immediately released test results.

The fact that many people look at their results before they hear from their doctor “[makes me wonder], does that mean that I’m too eager to find the information, or are doctors too slow to respond?” said Pagán. “I don’t have the answer but it made me think about things like that.”

He also said he wanted to know more about the patients who didn’t check their information right away. “When you look to answers to a survey and you see some populations lag behind in terms of not understanding the information or not checking the information, that means there’s room for improvement,” he said.

One thing providers could do is publish the information in the language of the person looking at the results, Pagán suggested. “Healthcare in general is pretty good at that, but you can always make sure the documentation is provided appropriately.” Another idea would be to employ artificial intelligence and chatbots to help patients better understand their results, as long as the responses were carefully crafted.

Study limitations included limited inferences about habitual behavior or frequency in the primary outcome measure and the fact that all measures were self-reported and may be subject to recall and social desirability bias, the authors wrote. In addition, observed associations may be subject to residual confounding, and some significant findings may reflect chance. In addition, the Health Information National Trends Survey did not identify respondents’ health systems, so system-level variation in immediate-release implementation cannot be accounted for.