Just after the ImproveCareNow Spring Community Conference last month, I wrote about the anxiety and anticipation that can precede such events. As I explained, “what we really want is to have set a scene that will allow all to feel welcome, included, part of the community, free to share their ideas and expertise regardless of role, and that they will leave having felt both delight and full of the “human affections” that are (or should be) the hallmark of a truly collaborative improvement community.”

After the conference, we asked members of the community—from diverse roles and centers—to share their perspectives on how we did. We hope you’ll enjoy their words. I know we all feel the challenge to maintain our momentum and indeed do even better next time and hope you will join us in finding ways to make our next community gathering equally inclusive and participatory – the very best it can be!

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DEB OSTIGUY, PARENT AT BAYSTATE MEDICAL CENTER AND MEMBER, IMPROVECARENOW PARENT WORKING GROUP

“At the Improve Care Community Conferences, there is nothing “ordinary” about being a parent advocate within this network. The way in which we as parents can sit shoulder to shoulder with doctors, psychologists, dietitians, nurses, researchers and other clinicians is nothing short of amazing. There is an indisputable desire and passion for quality improvement and innovative collaboration across the care centers. I have felt the unparalleled power of this network. My question is… as a parent with a child with IBD….why would you NOT want to be a part of this vision? “We are the cure…waiting for the cure!”

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KRISTIN FINKEN, IMPROVECARENOW STAFF MEMBER

“As a member of CCHMC’s Biomedical Informatics department I’ve actually been a part of this community, behind the scenes, for the last three years.  My role, in this network, is to assist with the Registry by setting up trainings and answering questions via the helpdesk, and to analyze use of the Registry tools by formulating monthly and ad-hoc metrics.  After getting the chance to attend my first Community Conference as a much-needed fill-in Staff member, what I was left with, was nothing if not profound.  It’s easy to get lost in the day-to-day of your job and not feel like you have much of an impact.  The entire experience changed me in a way.  It made me come back to work with a new attitude.  (Ask my co-workers).  Maybe it was listening to Sarah Myers, Dick Colletti, Peter Margolis and hearing their commitment and passion, or maybe it was hearing actual patients speak of their journey that gave me a new perspective.  Either way, I’m so truly impressed by the ImproveCareNow network and thankful to be a part of it.”

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SAMARA SINGER, MEMBER, IMPROVECARENOW PATIENT ADVISORY COUNCIL

“I am extremely grateful for the opportunity to attend the ICN conference with PAC as a new member! I finally got to meet the amazing young people I’ve communicated with over the phone. I am so happy to say that I have gained wonderful new friends thanks to the conference experience. It was awesome to learn about the new projects ICN is working on. Through group sessions, I met several very dedicated health professionals who have increased my confidence that there are people genuinely fighting for those with IBD. They don’t want us to suffer in silence. Therefore, I am asking the community to continue to listen to what we have to say as patients. It is crucial for the community to help those in need, for we are only as strong as our weakest link. Thank you to all who are committed to fighting with us!”

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STEVE STEINER, PHYSICIAN LEADER, RILEY CHILDREN’S HOSPITAL AND CO-CHAIR, IMPROVECARENOW RESEARCH COMMITTEE

“I will remember the Spring 2016 CC for its new location- the Big D!   A new hotel, cowboy hats, and Red Bulls at snack breaks- what’s not to love!  As co-chair of the Research Committee, it was incredibly rewarding to see the first ICN Research Designathon come to fruition as the culmination of the Research Prioritization project.  When we asked for volunteers to participate in research groups to help formulate research questions, hypotheses, methods, and goals, we had no idea who might respond.  Saturday morning, five such groups met and in a little over one hour, these multi-stakeholder groups hammered out some deliverables that were then immediately presented back to the community.  Now we need to move these projects forward: studies in dual therapy, malignancy monitoring, enteral therapy, shared decision-making, and failure to achieve remission are ready to begin.  MY HARD ASK:  consider whether you have the enthusiasm to be part of one of these research teams.  I can assure you it will be hard work but an incredibly rewarding experience, with the opportunity to work with different stakeholders within the ICN community.  Hopefully we will have some forward progress by the time the Fall CC rolls around!”

So many great reflections and asks from our community members. Here’s my ask to you – follow ImproveCareNow on Twitter and ask at least one other friend or colleague to do the same! Connecting on social media is a great way to keep the connections and collaboration going across the miles!

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