The Internet is a wonderful thing. It helps people across the globe connect, communicate, and argue about everything from the Oxford comma to what’s really in a hot dog. Full disclosure: I’m all about the Oxford comma, and avoid hot dogs because I don’t like nitrites.
I come from the time before the Internet – in other words, I’m well over 50 – but as a journalist I embraced digital technology as soon as it arrived (for me, that was 1980), and have been using it to fact-check ever since. Which is why I view health literacy as the foundation of patient empowerment, and helping build health literacy as the mission of empowered, activist patients worldwide. And why I view the Internet as our best tool for health literacy building, personal and community.
Because health literacy requires a grasp of basic science, it can feel challenging to someone who didn’t love biology class, or who found themselves floundering in physics lab. That’s where patient communities really shine: helping newly diagnosed folks figure out what the heck that was that the doctor said, or how to read a lab report, or why [insert condition here] even showed up in the first place.
Here is what I consider the Top 3 Things for yourself and your family’s health literacy building:
- Know your risks. What is your family’s health history? Is there a line of folks who lived to 80+, or a family history of heart disease and stroke? Did you grow up in an area with a lot of industrial pollution? What’s your personal health history (asthma, sports injuries, etc.)? Knowing these things can help you, and your clinical team, set up an “early warning system” to monitor your health status.
- Write it down. Once you start gathering information, write it down. You can keep it as simple as a composition book, or as complex as a spreadsheet. The key is to keep records that you can share with your doctors, and your family, to keep everyone informed. There are online services, including mobile apps, which can help you do this. A good overview of that whole universe is on the MyPHR site.
- Read all about it. When you have data (the information from #1 and #2), you can start turning that data into knowledge. Learn, from trustworthy, science-based sites like Medscape, MedLinePlus, and com, what the straight scoop is on symptoms and treatments for pretty much any disease or condition that affects humans. Add Health News Review to your reading list for solid myth busting on the latest medical miracles (spoiler: they’re usually not miracles) by health journalists with years of experience. Bonus tip: if you’re looking for cost information on specific treatments, check out Clear Health Costs.
You now have three things to get you started. You’ll see more on the health literacy topic from me in the coming months, and I welcome your questions and topic suggestions. Let’s learn, teach, and share, together!
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.