Communities take risks together.

I am writing this having just returned from several whirlwind days in Chicago at the first ever ImproveCareNow Community Conference. The ImproveCareNow Network has come together in person twice a year for seven years, but this was the first time this gathering was not called a Learning Session—the traditional Quality Improvement Collaborative term for in-person meetings. We changed the name for several reasons, the most important being that ImproveCareNow is now indeed a community. Here are some reasons why:

ImproveCareNow is a community

We have each of these things in ImproveCareNow and in future LOOP posts I will share examples of each. But one that I didn’t list,which became very clear to me at the conference, is that the best communities take risks together. I want to share a bit more about that here.

One of our conference goals was to brainstorm new interventions—in QI-speak, “changes to test,” – that will help us get even more kids with Crohn’s disease and ulcerative colitis into remission. Prior to the conference, we developed a new list of key drivers—or focus areas—that we thought were most important to improvement. Now it was time to crowd-source the best ideas for interventions to tackle in each area. This tends to be the most fun part of the process!ImproveCareNow Key Driver Diagram with Primary Drivers and Space for new InterventionsThe ImproveCareNow Network has developed interventions together before. But this time, we wanted to make sure our incredible diversity and stakeholder engagement was really reflected in these new interventions. In the weeks leading up to the conference, each center interviewed patients and parents to get input on challenges and opportunities in each Key Driver area. In doing so, they opened themselves up to a variety of feedback; I know this felt risky to some centers.

Pre-work from the Spring 2015 ImproveCareNow Community Conference: Learning from Patients and ParentsBut as a community we took the risk together. Prior to the conference, nearly all of our 254 participants chose the three Key Drivers that most interested them. Once we received their choices, we put together small groups (6-9 people) that were as diverse as possible-blending people from different centers and with most groups including at least one patient, one parent, and others from several clinical roles. Planning this felt risky even as it felt like the right thing to do. Would people want to spend almost two hours of valuable conference time in an informal exercise with people outside of their peer groups? Would lone parents and patient at the tables feel overwhelmed, ignored, or vulnerable? Would conversations stall with the minutes ticking by slowly?

It ended up being a risk well worth taking. Between 2:00 pm and 4:30 pm on Saturday the low, quiet, steady buzz of conversation eased all of my concerns about people diving in and learning with those very different from themselves. Many observers noted that as  groups tackled the provided questions, the first thing they did was turn to the parent or patient at the table—deferring to their expertise. When each of the three 40-minute discussion periods ended, we worked harder than expected to get each group to wrap up and move to their next tables. And the notes that were shared—and will guide our work in the months and years ahead—are full of some of the richest, most diverse insights I’ve seen in my quality improvement career.

Example of Notes from the Small Group Discussions about ImproveCareNow Key Drivers and InterventionsWe work hard to make sure all participants in this community have the quality improvement structure, skills, and tools to achieve their goals. Even more important is making sure the right centers and people connect so they can do more together than alone. We foster this online on our ICN Exchange knowledge commons, on monthly webinars, and at our Community Conferences. Admittedly, this gets a bit more challenging as we grow and we don’t always get it right. But what these collaboration sessions showed me is that community members desperately want to keep connecting across roles and centers and that they embrace the expertise of everyone at the table. They are building their own momentum and will continue to do so even as we get bigger and push our network infrastructure to keep up. So thank you to the ImproveCareNow community for taking risks together, leaving roles and titles aside, and creating a better today and tomorrow for and with kids with IBD.

This is not goodbye.

Samantha Kennedy – outgoing Patient Advisory Council (“Pack”) Co-Chair – is heading off to medical school in the Fall. In an inspirational message to Community Conference attendees – and indeed the whole ImproveCareNow Community – she thanks everyone for working within ImproveCareNow and for believing we can make a difference together. And she reminds us that our work (with patients specifically, and in general) may not be easy or quick or tidy, but ‘it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.’

Sami’s words are inspiration on-tap. Enjoy!

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Inspiration on tap – Jennie’s Speech

Out of all the talks at the ImproveCareNow Spring 2015 Community Conference none made my heart beat a little faster quite like those delivered by Patient Advisory Council Co-chairs Sami Kennedy and Jennie David. The ability of these two ladies to shine a light directly at the heart and soul of ImproveCareNow is uncanny and uplifting. I challenge anyone reading this, Jennie’s speech, to not break into a face-splitting grin (and/or run right out to change the world).

For anyone momentarily struggling with the thankless monotony of changing the healthcare system – I would prescribe the following: read a speech at bedtime and resume improving care now in the morning. Repeat as needed for maximum benefit.

They’re a bit long so I’ve shared Jennie’s speech below and will share Sami’s in a separate post. Enjoy!

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