How do we process information about disease?
When we become sick, one of the first things offered by healthcare providers is often a pamphlet which describes what we have and what we may need to do in order to become well. Usually, these look like:
For many, this is merely the first step in a stressful quest for more information.
Consider this quote from Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy, who learned that her son had been diagnosed with Duchenne, a fatal disease effecting 1 out of 3,500 boys (Pat presented with us at the 2010 GoldLab Symposium):
“Your child is ill. A disease you may not recognize? Cannot pronounce? What Choice do you have? You become, by definition, an advocate. You will have to educate family, extended family, friends, teachers, doctors”
At the very least, these situations encourage many patients, and the ones who love them, to begin gathering as much information about their condition as possible. In fact there are a variety of resources that assist with taking knowledge of many diseases to a deeper level:
Why does this matter?
Consider these barriers to communicating healthcare information effectively:
- Most health materials are written at the 10th grade level or above
- In Florida, 51% of adults read at or below 8th grade reading level
- In the City of Miami, 86% of adults read at or below 8th grade reading level
Conversely, consider patient perspectives when it comes to receiving information:
- 72% expressed trust in most or all information found online
- 69% said they had not seen any wrong or misleading health information on the web
- 68% said online information strongly influenced their health choices
HHI
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