Health Literacy Drives Trial Access: Oyepeju Abioye-Akintola, MD, MSc

Unreadable informed consent documents represent a fixable barrier to clinical trial enrollment, according to Oyepeju Abioye-Akintola, MD, MSc, a third-year internal medicine resident at Allegheny Health Network and founder of Protocol & People. Abioye-Akintola launched the public initiative at the start of this year to demystify clinical trials for the general public.

“Clinical trials just seem like this very abstract concept to a lot of people,” she said. Many people hear “trial” and wonder whether they will be “involved in some form of experimental care,” which can deter participation.

She emphasized that trials often serve as “a frontier into very emerging treatments that are very much life-saving,” and that participants are frequently the first to gain access to that care.

Protocol & People uses posts, infographics, videos, and comics to explain trials in plain language. Abioye-Akintola said the goal is to help people “feel more at home with the whole idea of clinical trials and what they might represent for their cancer care.” With oncology advancing rapidly, she noted that “the progress has been astronomical” over the past 30 years, yet “there is a gap between what they know about trials and how they can benefit from it.”

Building the initiative led her to examine trial documents, and informed consent forms stood out. “I want to be able to look at this as a patient would,” she said. Her concern is that patients who cannot understand a document may be unable to explain their hesitation to their oncologist.

“If I look at this and I don’t understand it, why would I want to spend my time in a trial?” she asked, adding that existing medical mistrust compounds the problem.

Education level does not guarantee understanding, she noted. “Level of education doesn’t necessarily correlate with health literacy,” Abioye-Akintola said. The broader aim is improving health literacy through the platform while also “working on clinical trial readability.”