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Participation

Experiences in Health Literacy

Leigh Anne Naas Headshot
Leigh Anne Naas
October 15th, 20183 minute read
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Each October we hone in on the importance of health literacy for patients and caregivers as they navigate their health care experiences—including clinical trial participation. In the past, we've gone back to basics, defining key clinical research terms and showing how they interconnect. This foundational knowledge is essential for implementing health literacy practices, but there is one technique to improve this skill set that goes beyond textbook information: listening to the clinical trials experiences of others. We like the term "health experience literacy" to capture this expanded form of health literacy.

There are many lessons to learn from the unique clinical trial experiences of others, as you consider participation for yourself or a loved one. We saw this first-hand through the Hero's Journey Art project. For instance, people said they were more aware of clinical research after attending a Hero's Journey Art event, where they interacted with crowdsourced art created by people from across the clinical trials community. But you don't need to attend an in-person event to effectively connect with and understand the perspectives of others when it comes to health care.

There's an increasing number of online patient communities [think: Inspire, Clara Health, WeGoHealth, Savvy Cooperative and Patient Empowerment Network providing patients a platform to link up, ask questions and learn from one another. Additionally, more and more ePatients and advocates are leveraging social media channels to openly tell their stories and empower others in their health care decision making. Tweet chats like #PatientsHavePower and #PatientChat are another wonderful resource for people looking to improve their health literacy—and you get to decide the level at which you participate. For example, you can actively contribute to the conversation or simply read the transcript afterward (tip: check out Symplur for transcripts from health care tweet chats).

Another medium that is growing in popularity is podcasts, allowing patients to voice their stories in new ways. Lilly even has a podcast dedicated solely to health literacy, called Eschew Obfuscation. In our latest episodes, two people share their health literacy experiences as cancer patients. They both also provide practical tips for how we all can put health literacy practices into action in our own lives. You can listen to the episodes here!

So, whether you have a clinical trial story to share or are looking to learn from the experiences of others, there are many ways for you to take action this Health Literacy Month. Follow along with us on Twitter all October for more health literacy tips and tricks!

Blog post originally appeared on LillyPad.

Tags: hero's journey art, online patient communities,

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