Online health literacy tool achieves nearly 1M organic visitors

An online health information tool designed for people with low health literacy that is affiliated with the Cornell Center for Health Equity (CCHEq) and Weill Cornell Medicine has seen more than 800,000 site visits across more than 200 countries.

This innovative platform, the Patient Activated Learning System (PALS), was developed to improve digital health education for patients by making it easier to find and understand. Its content is often top-ranked in Google search engine results and it appears that ChatGPT has been using it, according to CCHEq co-director Dr. Monika Safford.

Cornell researchers are now following up on a pilot study showing that PALS could offer advantages over existing, well-known websites. Published in the journal Patient Education and Counseling in 2019, the results remain promising but drew heavily on participants with higher education.

“While we saw a really nice signal, we were concerned it was not representative enough of a patient population with lower health literacy,” says Safford, who is the founder of the PALS.

That distinction is crucial, given the project’s origins and existing national research on health literacy — the ability to find, understand, and use health information.

Understanding the health literacy gap

PALS traces back to Safford’s previous work at the University of Alabama at Birmingham and the state’s  “Black Belt” — a region with high poverty and chronic disease burden. During discussions with local doctors and nurses, she and her colleagues asked what could most help their practices.

“They all said better education materials for patients,” Safford says. “There’s such a profound knowledge gap.”

Indeed, a national survey on health literacy described just 12 percent of respondents as “proficient” — 36 percent fell in the lowest categories of “basic” and “below basic,” a result more pronounced in the Black, Hispanic, and indigenous populations. This gap places barriers to informed decision-making and adherence to treatment recommendations, including with prescriptions.

Like many Americans, the patients in the Alabama practices had increasingly turned to the web for health information — partially in response to shrinking face time with doctors. The doctors, however, weren’t sure where to point them to when asked. Searching on their own, the patients reported feeling frustrated with the resources they found, Safford says.

When her team looked online, they saw why. While the internet contains a vast amount of health information, it’s not always easy to tell what’s legitimate. Quickly getting helpful answers to specific, real-world questions is also challenging.

Even content from trustworthy sources can come across as wordy and difficult to understand. While the average American reading level goes no higher than the 8^th grade, a paper in the American Journal of Medicine found that popular health sites exceed that mark. The National Institutes of Health came in at 10.7, WebMD at 10.9 and Mayo Clinic at 11.3.

Safford and her colleagues envisioned a new, publicly accessible model that could support conversations between patients and doctors while also providing a resource to turn to after visits. They aimed to answer specific questions important to patients — content often not available elsewhere — to improve health outcomes and reduce disparities. That work has continued at Cornell, where Safford moved in 2015.

PALS site incorporates storytelling, videos and optional quizzes

The main content on the current PALS website stays below an 8th-grade reading level, though users can click on a “see the science” feature to go deeper. Each page answers a single question contributed by readers, with content regularly reviewed to stay updated. The responses are written by the Cornell medical community — either doctors or other team members supervised by doctors — and the authors are featured prominently.

Many answers use storytelling to feel more relatable, and many also feature videos (some have 20,000 or more YouTube views). Unique site components include a search history where users can quickly review previously read information and short, optional quizzes at the end of posts. When a post consistently gets low quiz scores, it’s revised to make it more understandable.

The goal, Safford says, is providing the info patients need to move forward without overwhelming them.

“The main thing we want is understanding and empowerment,” she says.

User testing with PALS content

The initial testing of PALS’ potential took place among roughly 100 patients receiving hypertension care at New York-Presbyterian/Weill Cornell Medical Center. The participants were randomly divided into two groups and asked to read about the drug chlorthalidone — one group read from PALS and the other from WebMD.

Results showed the participants thought PALS was trustworthy. In direct comparisons between the two sources, participants also correctly answered questions more frequently after PALS content and were more likely to report that they now felt comfortable taking chlorthalidone.

As a next step, Cornell researchers are finishing a larger follow-up study of hypertension patients reading PALS content. They’re looking at a more diverse population with lower education levels to gauge the impact on comprehension, confidence, conversations with doctors and medication adherence. Other planned studies will look at content for additional health topics.

Future of PALS: More content, courses and possible licensing to medical centers

Safford is also seeking funding to transition PALS content to a nonprofit she has formed called MedExplain. She envisions expanding content beyond the several hundred short articles currently available that cover only a half dozen current topic areas. She is creating PALS courses that package a handful of related questions. The new entity could promote the platform — so far, it’s not been marketed — and possibly license it to medical centers.

“For this to really reach its full potential, it needs to be incorporated into the electronic medical record,” Safford says. “We are very excited to see again and again how much patients appreciate the platform, and are eager to bring it into the clinical care process so the patients can share in their health decisions, and so that doctors can feel they are providing the highest quality of care for even their patients with the lowest levels of education and health literacy.”