How-To Tips

Health Literacy

Brief Recap of Health Literacy History

Oct 1, 2022

Curious to know how, when, why, and who helped health literacy get started, a while ago I posted a query on the online Health Literacy Discussion list. Here is a brief recap of what people shared about the history of health literacy.

1974. The first mention of the term “health literacy” was in a monograph by Scott K. Simonds entitled “Health Education as Social Policy”. In this monograph, health literacy was framed within the context of social policy.

1980s. Len and Ceci Doak (whom many consider to be the founders of health literacy as we know it today) studied the reading skills of hospitalized patients. The Doaks, along with Jane Root, wrote the landmark book Teaching Patients with Low Literacy Skills, first published in 1985. 

Early 1990s. Inspired by the work of Harold Freeman (then president of the American Cancer Society), Wendy Mettger, and others at the National Cancer Institute and the AMC Cancer Research Center created the National Work Group on Cancer and Literacy. This group brought together experts from diverse fields. Many of them continue to be health literacy leaders today.

Mid 1990s. Others got involved in health literacy issues and initiatives. They included not only physicians and other clinicians but also literacy practitioners, teachers, researchers, health communicators, patient educators, medical librarians, disability professionals, and social justice and environmental activists. The lay public, including new readers (adults learning to read) also became active in health literacy. 

Late 1990s. The Council on Scientific Affairs of the American Medical Association (AMA) published an important paper on health literacy, including five recommendations adopted as AMA policies. Joanne Schwartzberg was a key advocate for health literacy at the AMA. Health literacy also gained worldwide attention and action. Leaders included Irving Rootman and Linda Shohet of Canada, Donald Nutbeam of Australia, and Ilona Kickbush of Germany. Health Literacy Month, a worldwide awareness-raising event, was started by me (Helen Osborne) in 1999.

Early 2000s. Interest in health literacy quickly grew thanks in part to the 2004 publication of the Institute of Medicine’s report Health Literacy: A Prescription to End Confusion. The AMA Foundation also championed health literacy, creating an educational toolkit with the powerful video “Health literacy and patient safety: help patients understand.” Around this time, the pharmaceutical company Pfizer got involved, providing grants for research, tools, and training.  

Around 2010. Howard Koh (then assistant secretary of the United States Department of Health and Human Services) said health literacy reached a “tipping point.” He credited milestones including the Plain Writing Act, the National Action Plan to Improve Health Literacy, and enactment of the Affordable Care Act (ACA, also known as Obamacare).

Today. There are thousands of health literacy research articles, hundreds of health literacy programs, numerous health literacy coalitions, and too-many-to-count health literacy initiatives across the United States and around the world. Major milestones in the past decade include the formation of the International Health Literacy Association, publication of the scholarly journal HLRP: Health Literacy Research and Practice, and creation of IHA’s Health Literacy Specialist Certificate program. I am excited to see what we, alone and together, will continue to accomplish when it comes to health literacy.

Here are some Health Literacy Out Loud podcasts with people and topics mentioned above:

This month’s Tip is an excerpt from the chapter “About Health Literacy” in Helen Osborne’s book, Health Literacy from A to Z: Practical Ways to Communicate Your Health Message, Third Edition.