Look on Twitter, Facebook, LinkedIn, and many other social media outlets over the past few weeks, and ImproveCareNow is all over the place. Many quotes about “parents as partners,” “real patient engagement,” and “amazing collaboration.” It’s fantastic to see the buzz we are generating. It’s huge, and important, and feels like it will catalyze many others who are working on similar efforts to jump in and do the same. We have a lot to teach now, even as we learn. It’s helping us achieve health outcomes we did not think possible and will probably help others do the same.


But what does this mean at the micro level, in the day-to-day shuffle (and sometimes tornado!) of getting the real work of running this complicated Network done? I don’t pretend not to realize that the care teams out there across in our 65 centers are doing the hard work – planning visits in advance, getting to know our new automated reporting tools, and trying to fit this all into their already complex clinic workflows. They (with the families they serve) are real heroes in this Network. But a lot of work also goes on at the ImproveCareNow leadership and staff levels to make it all possible. And I consider myself very fortunate to be in the position, as part of this team, where I get to see how many of the pieces fit together, and witness the not so subtle shift in what it means to “work for ImproveCareNow.”


I’m going to use our recently completed Spring Learning Session as an example. Even just one year ago, planning the Learning Session meant that the core Quality Improvement (QI) project team and I looked at Network priorities and recent lessons learned, identified who would do a good job speaking about these things, and pieced together what usually turned out to be a good agenda for a good meeting. Parents and patients were starting to attend Learning Sessions, but were on the fringes and some would tell you they spent their weekend trying to figure out where they fit in. We felt good about including them, but we didn’t feel good about not understanding quite how we all fit together.


What a difference a year can make! In planning for the Spring 2014 Learning Session I found myself watching as unprecedented collaborations between clinicians and parents, data managers and parents, took place across the miles. In one instance, what began as an offhand comment about the potential for a parent panel at the Learning Session, which would address how centers can better engage families in QI work, became a series of many, many emails between a clinician, several parents, and ImproveCareNow staff. Over three months we worked together to co-design the objectives and draft a call-to-action that the panel could deliver to the Network. The result was one of the highlights of this Learning Session.


In another instance, a parent asked for permission to use Network remission data in his presentation—the kind of data that he knew could illustrate the ImproveCareNow story best. Again, I found myself watching an amazing email discussion unfold between the parent, our ImproveCareNow data manager and the centers that agreed to have their data displayed in a novel way by a parent. This kind of conversation about data (“send me that,” “no, let’s try it this way,” “yes, that will have the most impact”) happens all the time within ImproveCareNow. But until now, had been limited to QI, data management, communications, and IT staff.


I used to believe ImproveCareNow staff and leadership needed to work for the clinicians, parents, patients and others that make up this Network…they were partners, but also customers and we had to make it all work well for them. I now realize it’s all about working with them so they can help us get things right. So yes, I work with the many care teams who are providing more proactive and reliable medical, nursing, nutritional, social work, and psychological support to pediatric patients with IBD. But I also work with Justin, Jamie, Sami, JenJo, Jennie, Tania, Beth, David, and many, many others who have ideas and experiences that also need to be integrated into this learning health system.


Today these patient and parent partners email me just as any of my other coworkers would. They email me during the work day, but also at 11:00 PM and 4:00 AM, during their time. They do so despite having busy full-time jobs inside or outside of their homes and despite the extra time they already devote to caring for children with a chronic illness. They share their ideas, ask for my input, worry about pushing us too fast (I often hear: “we’re not going to get you all fired, are we?”), worry about not pushing us fast enough, and ask how my kids are doing. I push them to post things on our internal knowledge-sharing platform, the ICN Exchange, just like I push the care centers. They are creating 90-day goals to focus and guide their work just like the care centers.  Most of all, they are helping us walk together into a new model for running this Network, understanding we won’t get it right every time, caring about the impact on others who are new to this level of partnership too, and above all, making sure we all stay connected to what this work is really about:




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