As an educator, I find myself explaining my understanding of what I had learned about breast cancer as a disease as well as the common treatments. I knew nothing about breast cancer before I was diagnosed. As I learned, I echoed what I learned in the writings in my blog (http://bcbecky.com). The theme Learning about the disease applies to resources where we share resources that help patients learn more about the illness in which they have been diagnosed.
This theme aligns with the definition of digital health literacy as “the ability to seek, find, understand, and appraise health information” (Norman & Skinner, 2008, para 6). Further, it aligns with three of the patient health literacies identified by Jordan (2010), specifically: knowing when to seek health information, knowing where to seek health information, and retaining and processing health information.
My research analysis of the theme Learning about the disease shows that as an ePatient, I never stopped learning about the disease through diagnosis and treatment.
Initially I relied heavily on my healthcare providers to learn more about my disease. However, it became clear after my first support group meeting that I needed to not only learn the medical information about the disease, but also about what it meant to live with the disease. Further, my healthcare team and support groups provided me with information about what questions to ask, and what terms to use, when searching for information on the internet, which in turn provided me the information I needed in order to ask informed questions of my healthcare team, and to provide support to fellow breast cancer survivors.
There became a symbiotic relationship between my healthcare team, support groups (both in-person and online), and electronic sources of medical information such as credible websites and academic journals. Together, these resources have allowed me to continue learning about the disease that I live with.