Recently, I had the pleasure of sharing my story at a Learning Networks conference here in Atlanta. When you hear the term ‘learning networks’ just think ImproveCareNow, but for other chronic illness populations. This particular conference was unique because it brought four unique, budding learning networks together for the first time. The whole experience was extremely valuable, and it was amazing to see four learning networks that are at different stages, ranging from just starting out to those that have been doing it for a while. Sometimes in ImproveCareNow I find myself wishing change happened more quickly, but the experience helped remind me that we have come so far already. The purpose of my speech was to energize and inspire the participants, but I think it was me who came away inspired.

Several participants asked me to share my speech transcript so they could share with others after the conference ended. I thought maybe I could do one better and share my words with my entire ICN community. So, enjoy and I hope this reinvigorates you in our fight for better care and outcomes for young people with IBD.

My Ignite Speech

Hi, my name is Alex and I am a healthcare improver. But first and foremost, I’m also a patient.

I have been a member of the ImproveCareNow learning network for the last seven years of which 3 years was spent co-chairing their Patient Advisory Council. I grew up in Cincinnati and graduated from University of Cincinnati about a year ago. Currently, I am a clinical data coordinator at Children’s Healthcare of Atlanta. In laymen’s terms that means I run the registry systems for the IBD population at CHOA and on the side I also coordinate the outreach programs for that same population. I came to this conference because learning networks have defined my life…and I believe that they are going to change your life as well.

My place in the healthcare field was destined at a young age. I was diagnosed with Crohn’s disease (IBD) when I was nine years old and it has proven to have a powerful influence on my life. After diagnosis, I contended with a plethora of patient experiences. I’m about a foot shorter than I used to be…in small intestine length that is. I have multiple resection surgeries during high school to thank for that and these epic scars. I’ve gone to school with all kinds of medical paraphernalia from NG tubes to PICC lines and TPN. And I’ve felt like a human guinea pig from various medication trials and tribulations.

With each medical struggle, I experienced a varying degree of patient care and delivery: physicians who were personable and those that ruled dictatorially; communication between specialties that varied daily in terms of competency and efficiency; and appointment wait times that were sporadic and inconceivable. I learned to live with these inconsistencies; managing them simply became the norm…and as a patient, I adapted.

However, patients SHOULD NOT HAVE TO ADAPT when they are struggling through medical issues. Fourteen-year-old me decided enough was enough; I was going to be a part of the solution to change this norm.

I think it’s accurate to picture it as a David and Goliath image. Me as David and healthcare as Goliath. It’s hard and overwhelming sometimes to think how you as one individual can take on such a systemic problem. Fourteen-year-old me was young, unknowledgeable about healthcare, and seemingly alone in my decision to change that world. I truly had no idea how I was going to do it, but I knew that I was going to.

But what I realized was that sheer will to change a system is incredibly powerful. I started by enrolling myself in several research studies; going to a couple of foundation fundraising walks; and starting to mentor other patients. The more I did the more I realized that I wasn’t the only one who wanted to make changes to patient care. There were like-minded people around me and they were the ones who introduced me to ImproveCareNow – my learning network.

It can be hard sometimes to define learning networks to other people, but I always define learning networks as a community of people working for change. According to a great quote by Abhishek Shukla, “The richest people in the world build networks and invest in people; everyone else looks for work and invests in survival.” This quote really resonates with me because I think it alludes to that sense of community that made learning networks have such a powerful impact on me.

Within my learning network, ImproveCareNow, I have met countless individuals: patients, parents, doctors, nurses, etc. And each person I meet is an individual with a unique personality and unique interests. However, it’s so much more than just that. Each person, each individual, is someone who…wait for it…has the capacity to change your life. Each person has something to teach you, whether big or small, and if you miss your chance to let them into your life you have missed an opportunity to better yourself.

Look to your left...look to your right…do you know the people next to you? Do you know what strengths they have? Do you know how you can incorporate their ideas to make your work stronger? If you do know the answers to all those questions, you’re either awesome and on the right track or you cheated and sat next to people you already knew 🙂

This brings me to my two suggestions to make this week successful. The first of which is to meet as many future partners as possible. Think about it like my millennial self does. You follow 900 people on Instagram, never post anything, you don’t interact with other users, and you just use it to passively see pretty pictures. In my opinion that’s wasted time and wasted hours scrolling through social media. I use Instagram to follow Atlanta bloggers who share niche food locations and try to frequent one new place every weekend. I follow hockey YouTubers so that I can incorporate their suggestions into my rec game. Either way, I am trying to soak up all the knowledge I can from the people around me, which is very similar to how you should be making connections at this conference.

Too often we silo ourselves within our specialties and within our own institutions…limiting the number of people we meet and interact with. And this is where the inconsistencies I experienced as a patient come from. A patient going through surgery has troubling outcomes because the surgery team and their primary care team didn’t communicate before, during, and after surgery. Best practices at one hospital that drastically improve outcomes aren’t known about at another site. The list goes on. If these teams had communicated better with their colleagues some of these gaps in patient care could have been avoided.

Learning networks were created to break down barriers and build doors into the silos. For me, by building connections with colleagues in my learning network, ImproveCareNow turned into a home away from home and its members turned into family. 💚💙

The second mission for this weekend is to know that the sky is the limit at a learning networks conference. Think about it as a large family reunion and you are that 6-year-old child who asks a relative you haven’t ever seen a really tough question. You are a super cute 6-year-old (as cute as I am in this picture) and are curious about everything the world has to offer so no matter the question, your relatives are going to answer it. Same thing applies this week because no matter what background you come from or how overwhelmed you are right now, there’s a place for you in the learning network community.

No ideas are too far-fetched to be suggested and no question is too simple to be asked.

As a patient or parent, you have the opportunity to challenge doctor’s opinions vocally and as doctors and researchers you have the opportunity to ask questions you might have thought were out of bounds to ask a patient in clinic. I flashback to when I was a sophomore in high school. I was speaking on a panel at a conference similar to this. And I told the audience at one point that the reason residents made more mistakes was because they “didn’t have real jobs yet.” If 15-year-old me can get away with that you can ask pretty much anything. So, let’s take away that fear and know that this weekend nothing is off limits and no idea is a bad idea.

I came to my first conference not knowing what to expect and knowing all of three people in a room of 300. It can be intimidating as a patient being in the same room as doctors, nurses, and researchers who differ from you in age and years of education. However, I wouldn’t be where I am today if it wasn’t for this community. I honestly have no idea where I would be. Getting involved helped me come to terms with my disease; provided me my career path; and gave me IBD friends and colleagues who I’ve leaned on countless times. There may be some sort of perceived inequality when you first arrive, but learning networks have a way of putting everyone on the same playing field.

So, take this time to ask away, take plenty of notes, and love every second of it.

Here, in this moment, and in every moment after this week, every single one of you is a healthcare improver.


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