Building Bridges with Health Literacy
Megan Wilkinson, MA
As an educated person with some basic medical terminology training, I am lucky to have the health literacy to speak with—and understand—most of the professionals in my life. Anything I can’t understand, I read about it until I know enough. When my younger son’s gastroenterologist talked about the need for an MRI to find the reason for his dysphagia, I could read about Chiari malformations. When my older son’s special education teacher talks about his individualized education plan (IEP) progress, my eyes do not glaze over at the mention of statistics and graphs.
However, I am among the exception. In the U.S. population, 88% of adults have limited health literacy (as of 2003, the most recent data available). When health literacy is compounded by social and genetic determinants of poor health, it leads to more adverse health outcomes. Persons with intellectual and developmental disabilities (I/DD) are at even higher risk of poor health, in part because they depend on the health literacy and executive functioning capacity of those who support them.
Health literacy, at its core, is the ability to understand health information and to incorporate the knowledge into new situations. At a functional level, health literacy means that a person can make basic health decisions for themselves. At higher levels of health literacy, a person can analyze health information and apply it to new situations.
Let us suppose that I had less than functional health literacy. Making medical decisions for my sons’ complicated needs would be nearly impossible. The hospital system with which we are involved has wonderful social workers who are trained to help with navigating complicated medical cases, but they cannot replace the ability to analyze and make medical decisions.
Not all health decisions are quite so medically complicated. Health decisions are choosing a more nutritious dinner. Health decisions are figuring out how much cardio to do for a healthier lifestyle. Health decisions are knowing that you should brush your teeth twice a day. Most people make health decisions every day, often without realizing what information influences their decisions, and in turn, their health.
People with lower health literacy rates tend to trust health information from unreliable places like blogs, celebrities, and social media over health information from more credible sources. There is a need for health information that is not only trustworthy but will actually be trusted by people with lower health literacy.
McMillen Health is a nonprofit health education center whose educators teach students of all ages, abilities, and backgrounds. We are one of the last remaining independently operated health education centers in the nation. McMillen Health seeks to bridge the gap between what is trustworthy and what is trusted by communicating complicated health information in easy-to-understand formats.
For over 40 years, we have been educating Preschool through 12th grade students on health topics like human growth and development, drug use prevention, nutrition, and general health. In the last 10 years, we have expanded outside of the classroom to grow our creative services which include curriculum development, video production, and low-literacy content development.
In the last four years, we have added community needs assessments to our repertoire. This qualitative research method allows us to ensure we develop resources that the community wants and, more importantly, needs. For example, in 2018 and 2019, we conducted qualitative research with pregnant or recently pregnant people with opioid use disorder (OUD), as well as the professionals who serve them. The results showed that this population would prefer short, easy-to-understand videos in an app format. The Healthy Tomorrow app we’ve developed in response now offers OUD and prenatal education, and next year will also include breastfeeding, safe sleep, tobacco cessation, and birth spacing education. The app is applicable to all pregnant people and new parents.
In 2021 and 2022, we conducted needs assessments in Michigan and Indiana, respectively, to learn more about the dental health education and dental service gaps for adults with disabilities. We spoke to dental professionals, adults with disabilities, and people who support adults with disabilities. The participants revealed that there is a communication disconnect between the professionals and their patients, particularly those with disabilities. Professionals want what is best for their patients and desire additional education to support their success. Their patients want to be heard and have their needs met. They need a bridge to support communication and education in both directions.
McMillen Health’s goal is to be that bridge. We are developing curriculum for dental professionals to educate on the social and physical needs of their patients with disabilities. We will also develop education for adults with I/DD about dental hygiene—and more importantly, about how to self-advocate for their dental health. Self-advocacy is a way for people to be empowered to speak for their needs. These tools will help dental professionals and their patients with I/DD to better communicate with each other to achieve the goal of creating better dental experiences.
Having personal experiences with complicated medical needs gives me firsthand knowledge of how important health literacy is. This knowledge contributes to the way I view and develop educational resources always striving to build the bridge between what is trustworthy and what is trusted. However, any professional who interacts with people with low health literacy can help build bridges of communication. Educate yourself about the best practices in communicating with those with lower health literacy and view each interaction as an opportunity to increase health knowledge and health empowerment of those individuals.
We’re all at our healthiest when we know what’s best for us, but for some, it can be hard to get there. Building bridges to clearer communication helps us understand what we need to be our healthiest, why, and how to get there from here. McMillen Health will continue to build bridges as we believe it is the right of every individual to receive health education in a format they can easily understand.
About the Author
Megan Wilkinson, MA (she/her) is the Director of Curriculum Development at McMillen Health (mcmillenhealth.org) and has a master’s in Medical Anthropology. Her role at McMillen Health is to oversee the development of preventive health resources for people with low literacy. She has a passion for health equity and believes that all people have the right to preventive health education in a format understandable to them.