Editors Note: Over the next several weeks we will spend some time hearing the stories of ePatients who
have been collaborating together on ways to show the value of patients as partners, collaboration for improvement,
and connection and learning through peer communities. It’s important that these stories be told beyond Google
Hangouts or private Facebook groups or shared dinner tables and pushed out into more prominent places in society
because you can’t have culture change without collaboration and you can’t collaborate on what you don’t know about.
Our ePatient Advisor, Erin Moore, sets this stage for the series with this week's
There’s this weird feeling that happens after I return from a health conference. I’m so full of new ideas, having spent several days away focused only on the things I’m working on, being around only people who share my passions in this space. I get to put aside breathing treatments and medication ordering and insurance fighting as I listen to amazing presenters share about the phenomenal work they’re doing, trying to translate what they’re doing to what I do, always considering ways that we might be able to help one another. I eat lunch with unlikely partners and I’m fascinated by the wealth of knowledge they bring, wondering how on earth I got so lucky to have the opportunity to learn from them. Sometimes I’m the one presenting, proud of my work, anxious to share with others the ways that I believe what I do can also help them and their communities. Then there is dinner where we pack up “work” for a while and build relationships, getting to know one another on a more personal level – our interests, passions, families and friends. There’s a buzz that fills your soul and lifts your spirit.
Through these conversations, we realize a shared humanity and how our lives really are the fuel for the work that we do. When I hop on the plane to leave these meetings, I’m so full of energy and renewed hope. Then just like that, I am back to the rat race – preschool drop off, signing school folders, sporting events, field trips, breathing treatments and appointments and medications and worry. There’s a buzz at home too, but a very different buzz. I’m so grateful to be home to the hugs and the very important stories about who sat next to whom on the bus, trying to squeeze in dinner between homework and basketball practice, turning on a movie so that I can find five minutes of quiet to order the medication that we will run out of in three days. But no one here understands. Here, people are doing their jobs and living their lives. They didn’t get to experience what I just experienced, what changes me just a little bit every time it happens. And I realize that without this buzz at home I wouldn’t have the other.
There’s absolutely no question that I would trade everything to take cystic fibrosis (CF) away from my son and our family. There are days when I wish more than anything that I could go back to being “just a mom,” scheduling playdates and going on nature walks, not having to sit at home waiting to sign for this month’s medication delivery or change our plans due to an unplanned illness. Yes, CF is a horrible disease that just takes and takes. I cannot change the disease, but we can control how we respond to it.
CF has expanded my friend circle and my world view. I have such a deep appreciation for the experiences of others, and I often learn the most from the people I don’t agree with. This is what it means to be an advocate - loving so much that your heart could burst, and then channeling that love and balancing it against the fear of loss. There isn’t a right or wrong way to be an advocate, but it’s something that those of us in the trenches are uniquely qualified for. Everyone can stand up and tell their story in an empowering way, but sometimes diagnosis or disease progression pushes us closer to this. As we work in health care improvement as patient advocates, there’s a focus on data. But data, while it can persuade people, doesn’t always inspire them to act. To quote an amazing article on the power of storytelling, “To do that, you need to wrap your vision in a story that fires the imagination and stirs the soul.” This, I believe to be true.
I’m honored to be able to share my story with the world, one that challenges the paradigm for how you can work with patients and caregivers. Our lived experiences with research can help to grow our collective understanding of the benefits and challenges of participation – what is it that each of us want, and how can we collaborate to achieve that. Together, we can make the shift from reactive to proactive care. Together, we find answers and change outcomes.
The new musical Hamilton is a powerful story that celebrates our founding fathers, who launched a new era
of government. I’d like to honor some of the “founding fathers” of a new era of patient partnership in health care.
They have helped to create the foundation upon which this great community is being built. It is through our stories
weaving the thread between us all that we will continue to learn and grow. Over the next few weeks, you will hear
from advocates in both the diabetes and cancer communities sharing their stories related to the idea of patients as
partners, collaboration for improvement, and connection and learning through “the network.” So, in the words of
Lin-Manuel Miranda as Alexander Hamilton, “Let’s raise a glass to the four of us, tomorrow there’ll be more of us,
telling the story of tonight.” We hope you enjoy our stories.