The vast majority of Americans have worked within a health care system that is overly complicated and frustrating. For chronic disease patients, at times it can be even that much harder to navigate. From the diagnosis stage to the management and mitigation phase, patients are constantly fighting back or learning how to work around their insurance company or their doctor.
It can take years, even a lifetime, for chronic disease patients understand their health insurance plan. Just as alarming is the low rate of health literacy and the lack of effort put forth by insurers to educate the public on how to successfully work within their system. Advocates have declared October Health Literacy Month, taking advantage of the opportunity to highlight the low rates of health literacy and important educational efforts that are taking place to empower patients to learn how to speak with their doctor, navigate the system and challenge unfair insurance policies.
Health literacy has been defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Over 117 million Americans have a chronic disease, and experts maintain that health literacy plays a critical role in the management of chronic disease, continually referencing health literacy as a patient safety issue. The lack of literacy could potentially contribute to ineffective disease management, poor patient self-care and medical errors.
Even insurance companies are aware of the low levels of literacy rates and have done little to fix the issue. A 2017 UnitedHealthcare Consumer Sentiment Survey showed only 9 percent of Americans “showed an understanding” of all four of the following basic health insurance terms: health plan premium, health plan deductible, out-of-pocket maximum and co-insurance. Insurance companies understand that if patients remain confused and overwhelmed, they’ll do little to fight back against unfair and discriminatory practices.
Unfortunately, chronic disease patients who – through no fault of their own – might not understand complex medical or insurance terminology are generally reluctant to ask their health insurer or doctor questions, for fear of being perceived as ignorant, even when the system was intentionally built to confuse patients. This makes it difficult for patients to fully understand their disease, symptoms and treatment options.
To empower patients and promote health literacy, patient advocacy organizations are speaking directly with patients about resources to help them understand their disease, their health plan and relevant medical terminology. Organizations like the Institute for Healthcare Advancement help connect patients with resources like the Health Literacy Solutions Center, a forum that helps and educates patients. Additionally, the Group Health Research Institute created a readability toolkit to help researchers, public health officials, medical professionals and insurance companies develop accessible and readable materials for patients.
The Chronic Disease Coalition believes that all patients should feel empowered to challenge unfair insurance policies, discuss and ask questions about their disease freely with their doctor and help other patients learn to advocate for themselves.