Newly Insured Americans Don’t Understand Basic Healthcare Terms

Why increasing health literacy should be a national priority
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Jon Elswick/AP

An estimated 14 percent of English-speaking adults in the United States have below-basic literacy, or an inability to perform simple reading tasks. But 35 percent have only basic or below-basic health literacy. That means more than 77 million people have difficulty with common health-related reading tasks.

Health literacy involves the ability to obtain, process, and understand the health information necessary to make appropriate decisions, and it’s clearly essential to selecting health insurance. More Americans are enrolling in federal and state-based marketplaces, but being insured is only the beginning when it comes to reducing health disparities related to literacy.

Low health literacy disproportionately affects vulnerable populations that include individuals now eligible for new health insurance options: those with lower socioeconomic status and education, or disabilities; non-white racial and ethnic groups; the elderly.

Many of these Americans are now contending with unfamiliar insurance terms and are at risk of making uninformed choices that they may regret. This matters because those with low health literacy already tend to experience poorer health and to generate increased costs, estimated by some to amount to more than $100 billion annually.

While I am not an expert on the Affordable Care Act, as a clinical psychologist who conducts research on patient-centered care and health literacy, I am concerned about how millions will find their way through the maze of information without the basic understanding they need to make good choices.

On the HealthCare.gov website, some of the communication tools used are commonly recommended by those of us working in the field of health literacy. There are videos on how to use the Marketplace and other videos portraying personal stories about selecting health insurance. Some have gotten hundreds of thousands of views so far.

Perhaps most important for those whose low literacy precludes effectively navigating a website, or for those whose primary language is something other than English or Spanish, there is the 24/7 telephone helpline as well as lists of local organizations that can provide personal assistance with applications (there are more than 500 in my area). And recently a tip sheet was released to help those with new insurance.

But will all this be enough?   

In my clinical role at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, I provide psychological services to patients who have cancer—a population that faces large healthcare costs and is concerned about insurance coverage for pre-existing conditions. With enrollment deadlines looming, our center gave a presentation for patients wondering how the ACA would affect them.

But some patients with limited health literacy need much more assistance. Our coordinator of supportive oncology education has spent up to five hours helping just one patient apply for insurance through the Marketplace. She has needed to explain basics like premiums and deductibles, as well as how to compare insurance options. She has walked patients through checking to make sure their current doctors will be covered under new plans. Notably, despite having proficient health literacy and training, the coordinator has herself sought assistance to confirm the finer details. Clearly, these are not easy tasks.

These experiences echo the findings of a recent study from the Urban Institute indicating that a majority of those most likely to use the Marketplace are not confident in how well they understand even rudimentary health insurance terms.

How much the U.S. government spends on healthcare gets a lot of attention. But our below-average literacy among developed countries is more of a dirty, not-so-little secret.

Three literacy-relevant policy initiatives released in 2010 were eclipsed by the signing of the ACA into law that year. President Obama signed the Plain Writing Act, requiring that communication to the public by federal agencies be understandableHealthy People 2020 included increasing health literacy among its national objectives and HHS Secretary Kathleen Sebelius launched the National Action Plan to Improve Health Literacy.

Since then, health literacy information and tools have been made increasingly accessible to health professionals, various health insurance plans have developed health literacy initiatives, and expert roundtables have been held to identify how best to advance health literacy within healthcare reform.

Thanks to increasing research and policy over the last decade, we have amassed a respectable set of health literacy tools and guidelines that are at the disposal of key players in our nation’s overhaul of its healthcare system.

Still, there is a long road from these foundational steps to meaningful implementation.

Certainly there is room to improve individuals’ health literacy skills via adult education and K-12 curricula. However, we also need immediate solutions for the newly insured and others presently struggling within healthcare systems.  

To start, the reading level of written materials—from insurance and pharmacy forms to hospital discharge documents—should be tested and often reduced. Patient navigators show promise in addressing additional health literacy barriers experienced by those most at risk of not attaining appropriate care. Further, educating healthcare providers and patients on effective communication is beneficial across literacy levels.

Most important is holding health insurance and healthcare organizations accountable for establishing, evaluating and reporting health literacy practices.

Good health literacy is achieved when people’s abilities and preferences are well-matched with the demands and resources of the systems they are navigating. Failing to prioritize it will cost us dearly.

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Sofia F. Garcia is an assistant professor of medical social sciences, psychiatry, and behavioral sciences at Northwestern University's Feinberg School of Medicine.

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