Crossing Disease Boundaries: Thoughts from the ImproveCareNow Community Conference

By: Erin Moore & Breck Gamel

As the CF community engages in the work to transform their current community into a Learning Health Network, we can learn a lot from partnering with existing networks on developing a culture that values a commitment to quality and safety. Key insights, lessons learned and best practices can be shared through engaging presentations, discussions, observations, and collaborations.

A few weeks ago, we had the opportunity to attend attend a Community Conference for an existing learning network, ImproveCareNow (ICN), to understand how we might accelerate the reach and pace of our improvement as we share ideas, knowledge and data transparently. We believe that extensive collaboration can help us to learn about culture change, capacity and capability building, the importance of patient and family engagement, and much more.

ICN is a Learning Health Network for people living with Crohn’s disease and ulcerative colitis. They were the original Collaborative Chronic Care Network (C3N), designed by patients, clinicians and researchers dreaming about a new and better system of care for people living with these inflammatory bowel diseases. Started in 2007, their community has grown to 86 centers across the US and Europe who collect and share outcome data, collaborate on improvement projects to identify better ways to deliver quality care, and have ultimately and most admirably improved the remission rate among people attending their care centers to 80%.

The success of ICN can be attributed to a number of factors.

ICN uses an enhanced data registry where clinical and patient reported data are entered in once generating real time insights; patient data are never more than 3 days old for both patients & providers to partner in decision making.

This registry also serves as a population management tool, generating insights about the overall health of patients at a given care center or across a group of care centers, providing the opportunity for learning and improvement throughout the network.

ICN has a knowledge-sharing "commons" called The Exchange, which is a sharing site similar to Pinterest, where patients, providers, quality improvement specialists, researchers, or anyone associated with the network can go to find answers to the questions they have and share what they're learning in their life or work - everything from videos on how to swallow pills or drop a nasogastric tube to infection control guidelines, clinical trial recruitment, and center or network level improvement efforts.

What these technologies support is the community of actors willing to actively participate in sharing and collaborating. Everyone can and should participate as actors in our emerging CF community to ensure its success.

The remarkable thing about this network, something that has grown and matured greatly over the past 9 years, is the respect that the patient and family partners and the clinicians have for one another. They have working groups and learning labs where they collaborate both within and across stakeholder groups, respecting the strengths that each bring to the table. They hang out and talk like old friends, the way relationships should be in healthcare.

So what does all of this mean for CF? For starters, we're not starting at square one. ICN, the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) and Solutions for Patient Safety (SPS), all learning networks that have been developing and learning over the past many years, have started to lay the tracks for us to ride upon. We can learn from what they have done and are doing and model ourselves off of their success. We know what kinds of tools have the most substantial impact on patient health, and we can learn how these tools can be implemented. We can invite them to share more about the path they took to get to where they are, how they build relationships, grew trust, and struggled with transparency. We can partner with them to learn across diseases -- and we will! -- like how things such as social support, pre-visit planning and transition tools have no boundaries. We will stop wasting the precious time that we have in CF on solutions that have little impact and focus our efforts on learning quality improvement and collaboration to transform outcomes.

We'll end with a quote that sums up where we believe we are right now in our process. It's from one of our favorite books, Being Mortal by Dr. Atul Gawande:

“We are caught in a transitional phase. However miserable the old system has been, we are all experts in it. We know the dance moves. You agree to be the patient, and I, the doctor, agree to fix you, whatever the improbability, the misery, the damage or the cost. This new way in which together we try to preserve the fiber of a meaningful life - the loyalty and the individuality - we are plotting novices. We are going through a societal learning curve, one person at a time, as a patient and doctor, as human beings.”