When Jennie and I applied to represent the Patient Advisory Council for ImproveCareNow as PAC Scholars in 2012, we were asked to each write an essay on our expectations and goals. I read mine over in December before I jumped on a plane to Orlando – more on that later.
I wrote in my essay, way back in 2012, a list of promises I would keep if I could just please go to a Learning Session. Paramount on that list was this: “I will listen more than I will speak.” Because that’s what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don’t belong – and let me be clear that no one in ImproveCareNow made me feel this way; my stereotyped idea of what it meant to be a patient did.
“I will listen more than I will speak.” This was my perception: it was okay for patients to sit at the table. To sit, to listen, but to speak? How could I? I was nineteen. I was a patient. What could I possibly have to share?
There is a time for listening, absolutely. But there is also a time for speaking – for all to speak. I had no concept of that as a young patient. I couldn’t imagine myself having any sort of expertise that would help improve the healthcare system, even as I navigated it constantly. I figured I’d be there as an observer, to bring back insights to share with other patients about ImproveCareNow’s work to help kids recover from, and more so, avoid flares of their IBD. Observer is the word I would have chosen to describe my responsibilities there.
Since my first Learning Session in the fall of 2012, I have been to five more. At each of them I have listened with a tape recorder running in my mind every second of every day, but I have also come home with a hoarse voice. Observer? No. I am so much more. No one at the Learning Session is just an observer – whether a long-time veteran or a special guest. Look at the buzz generated on Twitter (while you’re at it, check out #icncc15s!) if you don’t believe me.
I love to tell the story from my second Learning Session. To give you some context I am still nineteen here, and I’ve never before presented anything, anywhere, outside of a classroom. I was involved in a Q&A after a presentation I co-led with a physician and psychologist on medication adherence. A psychologist, physician, and patient together giving a presentation – I couldn’t have imagined that just six months earlier! A physician in the audience posed a question to me regarding how I felt adherence could be effectively encouraged in patients my age. I gave my best answer, and he responded with his opinion based on his experiences, which happened not to be congruent with mine. We conversed for a few minutes; others chimed in. It was fascinating, thrilling, magical; I don’t know if I can point to a better real-life definition of active collaboration.
After the session, this same physician hurried up to me at the podium. “I’m sorry,” he said.
Wait, he said what?!
“I’m sorry,” he said.
I asked him to clarify, very confused, and he explained that he worried he had made me uncomfortable by challenging my opinion as a patient. In fact, he had done just the opposite. This was my ImproveCareNow “lightbulb” moment.
I have been asked countless times: how did you become who you are, a young patient leader? How do we get our patients to be like you? I am not sure this is the question we should be asking – because it assumes I am extraordinary. I know I am different; I have done things few other patients my age have – but it is not me that is extraordinary. I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.
ImproveCareNow is an extraordinary community – a community with an ever-growing number of parents and patients being handed the mic – being asked to do things that were never before possible. This physician hadn’t made me uncomfortable, no, not at all – he had made me comfortable. Our conversation erased all doubt from my mind that I was there for show; I was there for the same reason as him.
I wish I could convey to you how incredible that felt – and how sad I feel in retrospect that feeling included, truly included, had to feel incredible because it was so unusual.
I told that very story twice in 2014 to two very amazing audiences – first, to executives from the Robert Wood Johnson Foundation and, second, to healthcare leaders and learners at the Institute for Healthcare Improvement National Forum – the reason I took that flight to Orlando. I presented the Patient Advisory Council to each and, in each case, asked them to imagine collaborating with patients. I told them about the promise I made before my very first Learning Session, and how I have broken it over and over again.
There is a time for listening, and there is a time for speaking. For all to speak, and all to listen.
I found out in the fall I’ve been accepted to medical school, and I’m still trying to figure out what it will mean for me to be both a patient advocate and a medical student. But here is what I do know: I can’t really imagine myself practicing in a system without ImproveCareNow and networks like it that I hope will be just as successful for other conditions. I want to be a physician who makes my younger self proud. One who doesn’t just repair broken things, but creates things that are better. One who is brave enough to say and show that everyone has expertise, taking patient and family engagement to the places ImproveCareNow has, where it can be frightening to go. I see networks following in the footsteps of ImproveCareNow as the foundation of how I hope to practice – and how I have to practice. This is not only creating health for kids with IBD; this is making the whole system healthier.
Of course I am scared as I figure out a new set of expectations – but, this time, I don’t expect to be silent.