Article
Health Literacy: Making Content Clear, Engaging, and Appropriate for Patients and the Public
By CISCRP Staff|Feb 11, 2022
Health literacy has always been an important part of CISCRP’s work. From general educational content about clinical research to sharing information and results for specific trials, we take pride in making content that is easy-to-understand, non-biased, non-promotional, culturally sensitive, and relevant for the communities we connect with.
In late 2021, CISCRP formed our Health Literacy team to further this part of our mission. We are excited to share some insights on what our team has been up to!
In this blog, you will learn how we are expanding our library of educational content and applying principles of health communication to new and engaging types of content. Most importantly, you will also hear about how we are working more closely with individuals from the communities we hope to inform and empower.
What is health literacy?
Many people know that health literacy, on a personal level, is the degree to which individuals can find, understand, and use information and services to make health-related decisions. A common example is following instructions for using medicine. A more complex example is understanding how clinical trials work, how they might impact your life if you participate, deciding whether to participate based on that information, then actually finding and determining whether to enroll in any particular trial.
Many people might not know that there is an equal and crucially important other half to health literacy – the organizational level. This is the degree to which organizations equitably enable personal health literacy.
At CISCRP, our focus and dedication to health literacy supports both individuals and organizations, including our own. We aim to achieve a high standard for health literacy to help patients, study participants, and members of the public.
What is the Health Literacy team doing?
Our team of editors, project managers, graphic designers, and community engagement specialists have been busy! Our favorite projects have focused on the topics of diversity, equity and inclusivity, Pediatric Research, and raising awareness on the key role of health literacy among researchers involved in medicinal product development.
Our newly redeveloped educational brochure about clinical research for Black and African American communities was created by working together with members of these communities, as well as subject matter experts who have experience working with them. This included receiving feedback from 500 members of Black and African American communities through an anonymous survey.
We also redeveloped our Common Myths About Clinical Trials educational brochure. The brochure, which is for all audiences, provides a fair and balanced view to addresses some challenging issues and misconceptions about clinical research.
One pharmaceutical company showed a big commitment to health literacy by asking us to deliver a series of health literacy trainings for their staff. We also developed other awareness content including a crossword puzzle and an infographic about simple ways to apply health literacy in everyday life.
Community Engagement and Insights
To ensure the materials we create meet the health literacy needs of the people we hope to inform and empower, we ensure members of the target audience are involved in the development process. Most often, this means our content is reviewed by a “Review Panel” of volunteers that includes patients, health professionals, patient advocates, and members of the public.
For some projects, we hold “Feedback Forums,” which are like focus groups, user-test through interviews, or even survey 500 or more members of the target audience. This helps us make sure we really understand what the community wants to know and what they think about new materials we create. We also make sure some materials, such as brochures and videos, are reviewed by an Institutional Review Board.
Stay tuned for more blog posts about the work we do to learn how you can apply health literacy best practices in your daily life and work!
For a sneak peek, check out our 4-part Pediatric Education video series which combines live actors and animation to help kids learn about clinical research!
Written by: Behtash Bahador, Scott Finger, and Holly Arthur
