Providing evidence-based health information is in the DNA of patient advocacy groups, but developing materials is only half the story – people also need to be able to act upon them.
Health literacy, or the ability to access and understand health information to make critical decisions about your own or a family member’s health, is something of a buzzword in the sector. And for very good reason, say the team at the Patient Empowerment Network (PEN).
“Health literacy isn’t just an academic pursuit,” PEN’s Executive Director, Andrea Conners told us in an interview for Change Together. “It’s about helping people to learn how to make the right decisions for their health and for their life. Our goals are to enhance health literacy and enable shared decision-making, so patients can ask the right questions at the right time.
“It’s one thing to have information, it’s another to take that information and be able to action it.”
The general rule of thumb when developing patient materials is to write for fifth/sixth-grade reading level, Kara Rayburn, PEN’s Director of Digital Communications and Engagement, says. Above all, the group aims to present complex information in as simple, visual and engaging way as possible.
Show not tell, make it personal
“The first thing is to create a clear call to action or goal, and make sure you show rather than tell. Visuals are much more appealing than text, and infographics are a great way to report metrics in an accessible way,” she adds.
“If you do have text, try to tell a story and make it personal so that it resonates with your audience.”
As a result, the majority of PEN’s health education content is video-based, which has broader appeal.
“We always define our terms and link to a relevant glossary, such as the National Cancer Institute, so people can check any related medical terms they need to understand,” Andrea comments.
“We aim to create videos that are easy to watch, keep your attention, but give you the information you need in a digestible and relatable way,” Kara points out. “We’ve broken away from that long format, didactic style, so it feels like a conversation and more current in terms of what people are used to seeing online.”
Enabling through health literacy
The aim of producing health literate-appropriate patient information, she adds, is to enable people to make the right decision at the right time, no matter where they are on their health journey.
“That’s why we exist. We are here to help patients build their confidence and become more health literate, so they can play an active role in their healthcare rather than just sit back and be a passive recipient.
“We want to upbuild people in terms of their advocacy and their confidence, but also point them to the organizations that can help them for their specific needs.
“It’s so important because we know patients who are more engaged and able to advocate for themselves have better outcomes,” Andrea finishes. “And that is a fact, not a belief.”