Reading a drug label. Understanding forms. Paying medical bills. Managing a chronic condition. All of these situations require some degree of health literacy, the knowledge and skill needed to navigate the healthcare system. But health literacy isn’t explicitly taught, and the lack of it is a barrier for many people.
According to the Centers for Disease Control and Prevention, nearly 90% of Americans struggle to comprehend health information. Studies show it costs the United States billions of dollars annually and results in poorer health outcomes for many people.
“We’re pretty consistently giving people information at a level that’s not accessible to them, and then we blame them when they don’t understand it,” explains Catina O’Leary, MSW ‘99, PhD ‘07, President and CEO of Health Literacy Media (HLM), a St. Louis-based nonprofit organization focused on health literacy. To illustrate her point, she highlights the complexity of prescription labels. “On the front of the bottle, there’s a complex algebraic equation, a multi-step math problem that we ask people to decipher. The system was not set up to make it easy to understand.”
Doing just that – making the healthcare system easier to understand – has been O’Leary’s mission for over a decade. At HLM, she works with healthcare organizations, foundations and companies to demystify and deconstruct their health information in order to make it easier to understand and act upon. Using evidence-based health literacy practices and plain language principles, her team of writers, graphic designers and artists, and usability experts develop and test health education and clinical trial content in formats preferred by the intended audiences, including digital and social media, infographics, e-Learnings, and traditional paper-based patient-facing brochures and handouts.
HLM’s clients include global pharmaceutical companies, health care organizations, national healthcare foundations, State government agencies, and academic partners. For example, HLM recently redeveloped a full suite of health literate educational materials to support the patient journey in lung cancer from screening to biomarker testing and treatment in English and Spanish for a national foundation.
“Health literacy is more than replacing jargon with words everyone understands or teaching patients to ask questions of healthcare professionals,” O’Leary says. “What’s important about health literacy is meeting people where they are, helping them understand the information they need within their context, and supporting them in their decision-making process. That’s what this is about.”
“Other people are so good at that, and it just crushes me”
O’Leary’s journey to HLM was marked by transformative moments for which she is grateful. Initially aspiring to be a psychologist focused on treatment, she shifted gears after an undergraduate professor suggested a career in social work, recognizing O’Leary’s passion for social justice. Another turning point occurred during her first practicum at Barnes-Jewish Hospital’s chemical dependency unit.
“That’s when I discovered that I am a terrible social worker in that way. I’m the worst clinician on the planet because I want to fix problems and struggle to sit with people in pain while they work through their challenges. Other people are so good at that, and it just crushes me.”
Nevertheless, driven by a desire to help others, O’Leary redirected her focus toward research, which turned out to be a perfect fit for her. “I found that I really loved research and details,” says O’Leary, who spent over 12 years leading research efforts at WashU’s School of Medicine, coordinating studies on HIV prevention and drug abuse. When the lab she was working with relocated to Florida, she joined HLM.
O’Leary appreciates the unexpected turns her career has taken and advises future social workers not to become too fixated on a predetermined plan.
“The smartest thing I unintentionally did in my career was to embrace the opportunities. I didn’t get caught up in what I thought my path should be. It would have been easy and logical to say, ‘I’m not a good clinician. I’m out.’ But I had good mentors and good peers to help me try something different. And I happened to find something that I really love.”