Do You Understand Medicalese?

Health literacy affects everyone. Imagine you are trying to order food in a foreign country and you don’t speak the language. Just like learning a foreign language, understanding health information is a challenge — one that everyone will face at least once in his or her lifetime. Health literacy, as defined by the Institute of Medicine (IOM) is “the degree to which individuals can obtain, process, and understand the basic health information and services needed to make appropriate health decisions.” According to the most recent National Assessment of Adult Literacy report, only 12% of adults in the U.S. are proficient in reading, understanding and acting upon medical information, and even these individuals struggle to understand complex health information at times. This critical gap has significant medical consequences for society.

Limited health literacy often leads to poor health outcomes, such as more hospitalizations, greater use of emergency care, lower medication compliance, and higher mortality rates among older adults. When patients don’t understand the information presented, they cannot make informed decisions about their health care. The Informed Medical Decisions Foundation believes every patient deserves the opportunity to be an informed and active participant in his or her care.

To help patients better understand their health care and become more involved, we have developed a portfolio of decision support tools. These tools are designed to explain complex medical concepts in an easy-to-understand manner. Each new decision aid undergoes a rigorous literacy review during early stages of development. At a later stage, literacy experts conduct cognitive testing with people who have made a decision about the condition or screening being discussed, and some who have not. These reviewers, who are deliberately selected to cover a wide range of education levels, provide valuable feedback on our booklet and web-based content. “This has been an extremely eye-opening process and we’ve made significant changes to many of our programs based on this user/patient feedback,” says Cathy Finn, Foundation senior research associate. In the coming year we plan to do in-house cognitive testing for several of our current decision aid booklets as part of the 2-year review.

Health literacy research and our own experiences with cognitive testing illustrate the need to tailor health information to multiple learning styles. “If you only present the information one way then you lose a large portion of the population,” says Jack Fowler, Foundation senior scientific advisor. “Words are great, but try explaining where the prostate is located and what an enlarged prostate means in just words — it’s not so easy,” says Jack. Visual displays such as pictures, charts and diagrams often help facilitate communication and make complex ideas more digestible. We strive to reinforce key messages in multiple ways in each decision aid program.

More than 89 million Americans lack sufficient skills to understand health information, which hinders their ability to make informed decisions about their care. The need to make health literacy a priority cannot be overlooked.

Health Literacy Resources:

CMS Toolkit

Health Literacy from A-Z 

HHS National Action Plan to Improve Health Literacy

Pfizer Provider Quiz on Health Literacy

Plain Language for Health Literacy

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