ImproveCareNow (ICN) has officially announced the call for proposals from clinician, parent, and patient members of the ICN community to develop presentations for the Spring 2018 Community Conference.

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

ImproveCareNow centers work hard to provide excellent care for pediatric patients and their families. The seamless sharing of clinical tools and approaches among participating centers is a vital part of their success. Now, we aim to codesign more tools & materials to share with and support patients and families in their day-to-day lives.

ImproveCareNow believes in doing research with parents/patients, not for or about them. The practice is called Research Co-Production and it means that parents/patients are not only participants in research, but also that they are team members involved in coming up with research questions, designing research studies, running the studies and sharing the findings. We believe that co-producing research can make it more relevant and improve the quality.

Traditionally, research has not been done this way. So it’s up to us to design a system that supports this type of partnership. Here’s how we’re building opportunities for research co-production in ImproveCareNow.

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.

In August funding was announced for a study examining the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in pediatric patients with Crohn’s disease and ulcerative colitis using a combination of “N of 1” methods and mHealth technology. This study has been named by the ImproveCareNow community.

Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.

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.

What does an engagement campaign have to do with a healthcare quality improvement network? ImproveCareNow leaders were wondering the exact same thing before we began learning from our friends at 270 Strategies (experts in both political and issue campaigns!) Their team is teaching us how to apply successful campaign strategies to engage a large and diverse community of people in helping kids with IBD get better, now. Quite simply, ImproveCareNow invites clinicians, parents, patients, researchers, and others to learn about our work and to lend their time, talents, and expertise so together we can learn and find innovative new ways to outsmart IBD. And right now we’re learning how to make it easy for everyone to connect with ImproveCareNow in the ways that work best for them and ensure we can harness and value each person’s unique and generous contributions - making it meaningful and rewarding to be a part of our community.

In ImproveCareNow we always start with a small test. To that end six of our centers are diving in as campaign pilot centers. Cincinnati Children’s Hospital Medical Center, Children’s Mercy Hospital, Children’s Hospital of the King’s Daughters, Children’s Hospital of Philadelphia, Levine Children’s Hospital, and the University of Michigan CS Mott Children’s Hospital are getting some training, rolling up their sleeves, and re-framing what an ICN IBD team looks and feels like. You will hear more about their journeys in the coming months as they build momentum and start sharing what they have learned with the rest of the community. In the meantime, we wanted to highlight some of the work underway in the early days of the campaign so that you can begin to learn with us now:

Snowflakes and ImproveCareNow

Campaign pilot centers are beginning to reframe their ICN teams with the “snowflake model” in mind. The snowflake model is a way of organizing people that decentralizes leadership and increases two-way communication. Basically it makes it easier for everyone to share the work and contribute to the success. These centers have found that creating a snowflake does not necessarily mean more work for the existing team, rather, it often involves reassigning people in ways that make it easier to get existing work done more efficiently.

“Hard ask?” – that sounds hard!

As part of their training, the participating centers are learning that it’s OK to be really direct about what they need from potential partners. It is lot easier to say no when the ask is soft and non-specific. So rather than saying “Umm…I was thinking maybe you could help us out somehow in the next few months,” they are looking for ways to be very concrete when asking for help, “Please come to our QI meeting next Tuesday. We really need your input on our new diagnosis process.”

Everyone’s story matters, and is important, and can change someone else's story.

More than ever, we are seeing how stories are key to helping potential partners understand what ImproveCareNow is all about and how they can fill important gaps in the community. Our Spring Community Conference is just around the corner and we are seeing some inspiring stories as part of the pre-work, stories that make very clear just how much our Network attracts those who want to join in and become a part of our success.

What this means to patients and families.

We know that growing our community will only make us stronger…indeed, the theme of our Spring Community Conference is “Strength in Our Numbers”! In her beautifully written LOOP post ‘Breaking a Promise’ Sami Kennedy really drove this point home. She reminded us why being part of ImproveCareNow is important and empowering for individuals, just as it is important to the whole community. As she says, “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.”

Meanwhile, we still have a lot to learn.

As the campaign unfolds, the ImproveCareNow leadership team knows it has an enormous responsibility to continue to ensure the network’s success, and to help develop a system that offers tools and opportunities for co-producing health and real partnerships. And we will be the first to admit, we have a lot to learn! We need your input as we go. We want to have open, transparent discussions about the challenges and opportunities ahead so we hope to engage more of you on twitter and other social media venues to take part in an ongoing dialogue between Community Conferences and webinars. You can follow @myers3411, @michaelseid11, @PeterAMargolis, and @improvecarenow on twitter and weigh in with your feedback and concerns as we build a bigger, better community together.