As healthcare evolves, patient storytelling is increasingly being seen as a valuable way to not only involve patients but also bring about meaningful change in the medical system.
The problem is too many patients are not clear on how to tell their story in a way that will resonate with their audience, whether it be physicians, administrators or other patients.
My personal journey of going from patient to patient advocate began when I was put on home and hospital based bed rest for my two high-risk pregnancies. As I spent weeks lying in a hospital bed while pregnant with my son, I saw simple ways doctors and nurses could improve the physical and mental care of us moms on the antenatal (high risk) unit. Never one to be quiet, I found ways to advocate for change from my hospital bed, and continuing advocating after my son was born, by volunteering to sit as a patient voice on a hospital committee focused on maternal health.
Through my patient advocacy journey, first by writing two patient advocacy books, and then by being my son’s voice in the medical system, I’ve met many other parents and patients who struggle to find their voice.
In wanting to help these patients be heard, I have developed some simple tips to help people get clear on their story before they share it with the medical system.
#1 Why Are You Telling Your Story?
You first need to ask yourself why are you sharing this story. Is it because someone asked you to? Do you need to vent or let off some frustration about the situation? Are you hoping to bring about a specific change? It’s important that you clearly understand your intentions for sharing your story. Also, check in to make sure it is a safe time to talk about your situation. Sometimes when a patient shares his/her story too soon, it can re-traumatize as he/she is reliving an experience he/she isn’t ready to revisit.
#2 What Are Your Main Points?
When you are done telling your story, what are the three key points you want people to remember? Take the time to figure out these key points, then create your patient story around them. Write them out and have them in front of you when you are talking so you make sure you don’t stray away from these points. And don’t just say them once. Keep coming back to them throughout your talk. By ensuring you are clear on what messages you want to leave your audience with, it will help eliminate confusion or misinterpretation by those listening. These points are also a great way of ending your story by saying — and remember, the three key points that are most important are 1, 2 and 3.
#3 Know Your Audience
This is one of the most common mistakes patients make when sharing their stories. Too often patients have a story they tell over and over again, altering it little as they have found a comfortable way of delivering the story. So here’s the challenge with this approach. If you don’t check in before you present to determine who you are presenting to (doctors, nurses, administrators or other patients) you are missing the opportunity for them to make the change you need. Your story SHOULD change with each audience. For example — don’t miss the opportunity to tell administrators the specific changes that are needed around the discharge process to minimize re-admission to hospital due to misunderstandings.
Every patient story has an emotional component or you wouldn’t be telling your story. So what are the key emotions? Instead of raising your voice and getting upset, name the emotion. “This situation angers me because …” Or “As I talk you can likely tell I’m still upset, so be prepared for some tears.” By naming your emotion is also helps people relate better to you versus tuning you out because you are raising your voice.
While emotions have a role to play, facts are even more important for your analytical listeners. You want to make sure all listeners are tuned into your story. What are the key facts related to your story? What happened? Where? Who was involved (without naming names)? What worked? What went wrong? Lessons learned? By focusing on the facts you’ll also have a better chance of keeping your emotions in check.
#6 Call to Action
What is it you want your audience to DO with this information? Everyone is in a position to do something, but what that something is will depend on your audience. Don’t finish your story and assume people know what you want them to do. TELL THEM!! Make them write it in their phones. Give them a call to action. Don’t risk misinterpretation. This is the best way to end your story — putting the onus on the audience to carry the torch and make a small, or large, change.
At the end of the day we all have a story, or stories to tell. I have found the best way to deal with challenges is to share my story with the goal of helping other patients avoid the same issue. While writing my patient advocacy books was a great way to share my experience with other parents and caregivers, I continue to advocate on the ground by being a patient partner volunteer for my local health authority and providing corporate training for healthcare professionals, educators and support workers.