Does low health literacy dampen the 21st Century Cures Act's impact?

The goals of the 21st Century Cures Act are being realized, as more patients look at their EHRs and lab results, according to a group of researchers from NYU's School of Global Public Health.

But there is a catch, the researchers said. Not all of these people understand what they're looking at, especially when they view lab and test results before they can consult with their doctor.

Signed into law in December 2016, the 21st Century Cures Act revolutionized how relevant parties access health information, including the patient. As part of the Cures Act's information blocking rules, patients were granted free and full access to their digital health data, including clinical notes and lab results. That means patients could, in theory, see their lab results before their provider does.

The rules sparked an industry debate that continues to this day. While experts acknowledge the importance of patients having open access to their medical information, could it be harmful for them to view their labs without the counsel and insight of a physician?

"We wanted to understand whether a patient's probability of accessing test results -- and understanding of them -- varies based on sociodemographic characteristics, health status, patient-centered communication, and digital health literacy," Jemar Bather, Ph.D., assistant professor of biostatistics at NYU School of Global Public Health and the study's lead author, said in a press release.

Bather and colleagues surveyed nearly 5,000 patients who had access to their digital medical records and received a test result within the previous year. They found the Cures Act was mostly delivering on its promise. More than two-thirds of the survey respondents (68.6%) said they'd immediately viewed a test result before talking to their provider.

Still, comprehension was lacking, with a sizeable proportion of patients saying they didn't entirely understand their lab results when they looked at them.

Of those who viewed their results immediately, 6.6% said they had a poor understanding, while another quarter (26.8%) said they understood them only fairly well. Just under a third (31.7%) understood their results well, and 34.9% understood them very well.

But there were disparities in who understood their medical notes, indicating that the Cures Act's patient data access provisions only benefit certain groups of patients.

Specifically, understanding of medical notes and labs was mostly concentrated among the most engaged patients, the data suggested. These folks tended to be older, female, high-income and have a greater number of chronic conditions, the researchers pointed out. They also had higher digital literacy and were more likely to use social media for their health.

Meanwhile, some groups are slipping through the cracks. Individuals living in the Midwest or the South, as well as those experiencing discrimination in the medical setting, were less likely to understand their test results.

Importantly, factors like digital literacy and more patient-centered communication were linked to greater comprehension of medical notes, the researchers found.

Healthcare providers might consider patient-centered communication strategies that both bolster overall patient health literacy and lay the groundwork for what it means to get immediate access to test results. For example, providers might caution patients about viewing their lab results without their doctor's review first or help them understand what "positive" or "negative" means within the context of a certain test.

There are also technological workarounds to this comprehension gap, according to the researchers. Emerging health IT tools could help patients understand their lab results even without the counsel of a physician.

"Health systems give you your data, but 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, Ph.D., professor and chair of the Department of Public Health Policy and Management at NYU School of Global Public Health, said in the press release.

"Health systems and online patient portal developers should look for innovative ways to improve how they communicate -- for instance, using AI to summarize test results in plain language and provide easy means for follow-up questions."

Sara Heath is an executive editor at Xtelligent Healthcare Media, where she covers patient engagement, healthcare policy and health IT.