“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” – A. A. Milne
Finding yourself sitting on an exam table, or lying in a hospital bed, can be scary. Annual well-check visits to your primary care doc are one thing, but if one of those visits starts you on a journey through the maze of treating a diagnosis of cancer, or Parkinson’s, or [insert name of life-changing condition here], you find yourself feeling pretty overwhelmed.
My mantra has long been “be your own best advocate.” I learned this from my parents, who were e-patients long before that term was even coined. When I started my own cancer treatment journey ten years ago, I sprang into self-advocacy mode even before I had a confirmed diagnosis. I asked questions, worked to understand the answers, pressed for clarification when I needed it, on a “lather, rinse, repeat” cycle throughout the months between mammogram the end of active treatment; that process continues to today.
Since I just got my 10 Year Cancer-versary mammogram today (January 11, 2018), I figured my January PEN post would be a great place to share some of my how-to on being your own best healthcare advocate.
Let’s start with the basics, questions you can ask in any healthcare setting when a nurse or doctor outlines an issue, and a treatment plan for that issue, with you. This is straight from the Institute for Healthcare Improvement and the National Patient Safety Foundation – they call it Ask Me 3:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
This will work for anything from an upper respiratory infection to a badly sprained ankle to a hypertension diagnosis. It helps you learn more about the issue at hand, and opens up a dialogue where you can add information about your medical history, your family history, your preferences about medical treatment, and any concerns you have about treatment outcomes and side effects. e-Patient Health Literacy 101, if you will. The Ask Me 3 program link above includes some really superb health literacy materials, too. I encourage you to read through them, and to share them with your family and your community. I’m all about “the more you know” in healthcare.
If you want some e-Patient Health Literacy 201 questions to take to your next doctor’s appointment, I put together a handout I call the Must Ask List. I use this one-sheet constantly, at healthcare events where I’m invited to speak and in webinars where I share my thinking on patient engagement, health literacy, and health system innovation. Please feel free to use and share it – if you have questions you’d like to see added to it, let me know.
It takes a village to change the world. In the global village working to improve human health, it’s critical that we all share what we’ve learned, and look to learn from others with expertise in both the getting, and the giving, of medical care.
Doctors + patients x knowledge sharing = health and healthcare system improvement at light speed.
That’s my formula, and I’m sticking to it!
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.