Engagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.

The days immediately following an ImproveCareNow Community Conference are always a bit of a let-down for me. After a frenzy of collaboration, learning, partnership, and celebration (not to mention the months of hard work leading up to it!), it just stops. There are many reflections and lessons that will be shared by me and others in the coming weeks (in the meantime, peruse the rich content on the #ICNCC15F twitter stream), but my thoughts--and hopes--for the community right now are quite simple as I enjoy a day of catching up and recharging.

Nearly 300 patients, parents, clinicians, researchers, improvers, collaborators, and supporters are preparing to come together to learn, share and collaborate (to outsmart IBD) at the Fall 2015 ImproveCareNow Community Conference! So, I’m stopping by LOOP to share some important things (some might even call them highlights) with you:

Wesley at five years old

Wesley was diagnosed with severe Crohn's disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable. 

Check out these nine amazing designs!

This experience was shared during an ImproveCareNow webinar by Cindy Gessouroun. I enjoyed her story so much, I asked her to share it here on LOOP. It's a simple, yet powerful example of how much we can accomplish together when we involve every person across the spectrum of care. I hope Cindy and Kim's story will be an inspiration, and that others will share their lessons about how best to identify and build relationships with patient and parent improvement partners!

The IBD team at Oklahoma University GI clinic was trying to identify parents to join our team. We asked providers for suggestions. We invited a few parents. We had an education day hoping to identify “interested’ parents at that event…however we continued to be without a parent partner. Kim, our front desk receptionist, attended her first Community Conference (CC) in Spring 2015. At our QI TEAM meeting after the CC she said, “I can find you parents!” She identified and invited 3 parents with whom she had formed a relationship throughout the years and who stood out to her as “potential involved partners”. After her phone calls she notified the research coordinator that ALL 3 parents said YES and showed up at the next meeting. Since then, they have stayed engaged and are slowly becoming partners with our TEAM. She had wonderful insight and her personal invitation must have been a good one!

On a journey of 26.2 miles, the first step is the hardest. I shared the first chapter of Parker’s story in May. If you read it you know that the first step for Keri, Parker’s mom, was asking the question “how can I get more involved in his care?” From there Keri and I began building partnerships between her family, the UVM Children’s Hospital and ImproveCareNow. Every step we took was aimed at helping Keri cross the finish line with her relay team at the Vermont City Marathon to raise awareness of Crohn’s disease and funding to support our hospital.

Keri’s enthusiasm and drive to succeed is contagious. Not only is she a busy working mom of two boys, but she committed herself to running a relay in a marathon on top of it all. If you’ve followed ImproveCareNow, you may have already heard the network refer to the African proverb: “To go fast, go alone; to go far, go together.” That proverb feels particularly applicable in this case. This solo sprint, soon became a marathon we took together. It was through partnerships we formed that Keri and I were able to accomplish so much in a very short time.

This project was not only a collaboration between a parent and a care center, but also the ImproveCareNow Network and their Engagement Team. They helped us lace up our shoes and got us on the starting line. They provided us with the tools necessary to be successful in this journey. Keri had one thing in mind when she started out on this journey and that was to give back to the people that give so much to her son. “The 360 degree support we have received has been amazing. I wanted to support our local team and ICN team because they are the reason we are where we are today. If it was not for the constant caring and support of the entire network, it would be a very scary place to be. From the moment of diagnosis, they have been there every step of the way”.

When Keri asked to get more involved, we were basically starting from square one. There was no precedent for this kind of joint project. But we very quickly tapped into the collective experiences of the ImproveCareNow Network through their engagement team and almost immediately started our Booster campaign. Our campaign had many different purposes. Not only was it designed to raise funds for the UVM Children’s Hospital, and to raise awareness about IBD, but it was also to support Parker. “His "marathon" is much longer than mine, and thinking of him every step of the way, is one more step closer to finding a cure.  I hope that this is something we can continue to grow and have him become more of an influence as he gets older”.

We designed the tee-shirts and then had a mere three weeks to sell them prior to the marathon. Emails were sent, Facebook posts were shared, and Grandmothers were called; no corners were cut when it came to showing Parker how many people care about him and support him as he battles this disease. Within those three weeks we brought together a community. It started with a question and an idea; and together we brought it to life one step at a time (which, incidentally, is a lot like how the ImproveCareNow Network started.)

The marathon was a huge success! I was there, along with many other supporters! The whole atmosphere was one of excitement and inspiration. Keri looked like she was crushing Crohn’s and Colitis with every step she took towards the finish line (which she crossed with Parker himself!)

In just over a month, we were able to raise $750 dollars in donations to benefit the UVM Children’s Hospital as they continue to improve the care and health of children with IBD. Even though the finish line of this particular marathon has been crossed, this is just the beginning of an incredible and enduring partnership between a parent, a community, and a little boy named Parker.

Outgoing Patient Advisory Council (PAC) Co-Chairs - Jennie David and Sami Kennedy, who co-wrote "What We Wish Our Parents Knew" - have announced their successors! Alex Jofriet, who is committed to turning his Crohn's diagnosis into a light for others to follow and Bianca Siedlaczek, who is excited to continue her patient advocacy career with ImproveCareNow. Keep reading for personal introductions from the new PAC co-chairs!

Meet Alex Jofriet!

Hi, my name is Alex. I was diagnosed with Crohn’s Disease at age nine. It took many years, about eight after diagnosis, for me to find remission. At diagnosis, I was one of those shy, studious kids who sat in the classroom, mostly invisible to my peers and I liked that. My diagnosis of Crohn’s Disease threatened that invisibility and it took me about five years to accept my disease and open up about what I was going through.

Now, looking back, that seems like long forgotten history as I have gone from wanting to be invisible to being involved in many advocacy endeavors. My involvement in advocacy led me to ImproveCareNow (ICN), which I have been involved in for the past 4 years. What has kept me involved with ICN is their focus on the whole IBD patient. As co-chair, I hope to add to this "whole patient" focus by increasing the amount of peer support for patients in the network through a universal mentoring system. I am appreciative of all ICN has done and continues to do and am super excited to get started!

Meet Bianca Siedlaczek!

Hi, my name is Bianca! I was diagnosed with Crohn's Disease about 7 years ago, when I was 9 years old. In the past 7 years, I have been through many hospitalizations, many flares, one surgery, one year of remission, and much more. Every one of my experiences with Crohn’s Disease, through the years, has facilitated the growth of my passion for being a patient advocate. Over the past year and a half, ImproveCareNow has given me the chance to fulfill my passion for being an advocate. From the beginning, when I came to my first Learning Session with my center in Michigan, I  loved what ICN was doing to improve patient care and how the network went about doing so.

I look forward to transitioning from being a patient scholar to becoming one of the Patient Advisory Council’s Co-chairs. I am beyond excited to take this next step in my “advocacy career.” I cannot wait to continue working alongside the many centers involved with ICN and ICN’s staff. To say the least I am very excited to get started!

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The Patient Advisory Council (PAC) brings together patient advocates in ImproveCareNow as partners to create a network for pediatric IBD patient engagement. They create, co-create, and advise the creation of innovations to facilitate improvement in pediatric IBD care and quality of life for children and young adults living with IBD. The PAC welcomes passionate young adult patients (14 years and older) to join. To learn more or join please email [email protected]

There is an articulate and thoughtful patient engagement leader from the UK who I follow on twitter named David Gilbert. Like me, you may enjoy reading some of his reflections on the key role of patient leaders in improving care and health systems and think about the lessons for your own work in integrating patient and parent partners into your improvement teams. In ImproveCareNow, we share a lot of writing and reflections from those working as IBD advocates and improvers, but I personally learn a lot from the perspective of those working on very different issues (though it’s amazing how much improving care for IBD actually does have in common with improving care for other chronic conditions like mental illness and even patient safety issues!). David shared a quote that made me think about the recent growth of patient partnership we’ve seen right here on this side of the pond in ImproveCareNow:

“Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.”  (Hal Borland)

I recently wrote about early lessons learned in the ImproveCareNow Engagement and Leadership Campaign. We were feeling our way, helping a small group of centers figure out what it meant to grow their teams by including more parent and patient partners in planning, carrying out, and evaluating the impact of improvement and awareness activities. While only three months have passed, so much has happened. The ImproveCareNow Community met in March at our Community Conference and we enjoyed watching clinicians, parents, patients, and others work together to share and improve upon ideas for helping more kids with IBD get into remission and stay there.

But the other thing that has happened in this short time is that watching engagement and partnership grow in ICN has become a bit less like patiently watching trees and a bit more like marveling at the persistence of grass. I sat down last week to review ImproveCareNow centers’ monthly narrative reports (in which they share their activities, barriers, and lessons learned), as well as recent activity on social media. I was thrilled to see concrete steps toward partnership taking place at a number of centers that had not yet begun this journey just a few months ago. Here are just a few snippets of what we are seeing emerge:

From ICN Centers’ narrative reports:

“We have sought and received very positive feedback from our parent who attended the meeting and will begin working with her to plan how we can involve her more actively and engage other families.”

“We are meeting with a hospital rep on Friday to work on formalizing a parent group!”

“We had our first meeting with our parent partner!” 

“We had a meeting in April with our parent and will conduct monthly meetings with her.”

On our ICN Exchange

On Twitter

There is indeed still so much work to do. There are more than 70 care centers in ImproveCareNow and many are still contemplating how best to launch and navigate these new types of partnerships with patients and families. But what I find encouraging is that the stories of progress that are emerging are not concentrated in one type of ImproveCareNow center or in one Learning Lab or in the centers that are known for being quicker to adapt to change. And they are not all stories of one type of engagement…building a mentoring program with patients or inviting a parent to join a QI meeting or having parents complete a survey about areas for improvement. Centers, with their patients, are trying to identify their own specific needs and assets and craft partnership opportunities that build upon them. They realize that not every partner—and not every clinician for that matter—is ready to engage at the same level (be it awareness, participation, contribution, or ownership as described by some of my colleagues in JAMA last year.) And they realize that that’s OK.

Partnering in these new ways can be hard. To extend the “persistence of grass” analogy, sometimes things grow too quickly and we even see weeds emerge. It takes work to get through those patches and get back to things growing the way they should. Patient partners may not feel heard right away—may not feel like full partners. Clinicians may feel worried about sharing their clinic’s opportunities for improvement and may even feel that their expertise—their ideas—carry less weight. As someone who helps the different stakeholders in this system work together, I am the first to admit that it is not always easy and can indeed be scary: We step on toes. We use the wrong words. We don’t always give everyone equal “airtime.”  But it’s particularly encouraging to see members of this community openly discussing these concerns and barriers and helping each other come up with ideas for surmounting them.

Three months from now I fully expect we will have more progress to share and will continue to see the fruits of our patience over the years as we have watched this community grow.  I am eager to see community members share their stories on this blog and help us learn from and with them.