Monday, April 11, 2016

In a networked world, value comes from who you are connected to, how you are connected, and the ability to share and contribute

 "I am of the opinion that my life belongs to the whole community and as long as I live, it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work, the more I live." - George Bernard Shaw. 

I'm halfway home from the ImproveCareNow Spring Community Conference as I start this post and I had an incredible experience. As quick background, ImproveCareNow (ICN) is a Learning Health Network for people living with Crohns & Colitis. They were the original C3N, a collaborative chronic care network, designed by patients and 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 & 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%.  Eighty percent of people who attend an ImproveCareNow Center are in clinical remission, giving them back their autonomy, the ability to live their life according to their own priorities.

One of the many reason that this network is so fascinating to me is that we are in the midst of trying to create a similar model for success in the CF community. We are dreaming of ways to use the knowledge of everyone to learn what we don't know, share information, and transform outcomes. The success in ICN can be attributed to a number of factors - an enhanced data registry where clinical and patient reported data is entered in once generating real time insights, patient data that is never more than 3 days old, for both patients & providers to partner in decision making; this registry also servers 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; a "commons" called The Exchange, which is a sharing site, similar to Pinterest, where patients and providers or quality improvement specialists or 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 an NG tube to infection control guidelines, clinical trial recruitment and center or network level improvement efforts.

The remarkable thing about this network, something that has grown and matured greatly over the past 9 years, is the respect that the patient/parent 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. Within the ImproveCareNow network, there has been an increased effort to grow empathy as a means to improving care. Several care teams have recently taken what has been named the "Enteral Nutrition Challenge", an exercise imagined by a person with IBD, where clinicians spend 5 days on a liquid only diet to experience what life as a patient with Crohn's disease might go through, drinking Boost or Ensure for nutrition, dropping their own NG tube, trying to walk a mile in the shoes of the people that they care for. I talked with a doctor and a nurse practitioner from the ICN Center at Cincinnati Childrens at breakfast one morning about their experience. It was incredible to hear about all that they learned, and the dedication that they had to participating in this to better understand the complexities of living this way when they are talking with a patient and helping them to make hard choices about their health and disease.

I participated in a similar empathy exercise called CF 1 Day several months ago and have been dreaming about ways to spread it throughout the CF community. When I arrived at the ICN Conference, I found out about a 24hr liquid only challenge, similar to the Enteral Nutrition Challenge, and I immediately signed up. I was hoping for an immersive experience going to this conference, and I had no idea that I would actually get to go this far in. Names were collected for anyone willing to try this out, and the night before the conference started I received a text message that said that I had won the lottery and was one of five chosen to participate in the 24hr liquid only challenge. I was initially surprised at the way they had positioned it as winning the lottery to participate rather than losing the privilege to eat solid food, but little did I know just how much I would be gaining. I've tried to capture my thoughts about my experience in this Storify.

So what does all of this mean for CF? For starters, we're not starting at square one. ImproveCareNow and NPCQIC and 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, struggled with transparency. We can partner with them to learn across diseases, and we will, about how things like 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.

I don't know if we have an "official" launch date for our network of if we are already in the midst of it, though I think the latter. We spent the past 2 years designing our future out of our very imaginations. We will begin recruitment of 15-30 care centers in the next couple of weeks so that we can learn to work together on a small scale before we grow at a rate that only a community with the infrastructure that the CF Community has could grow at. We will challenge the status quo for the sake of our health and the health of our children. We will transform CF care and extend the length and improve the quality of life for all people living with CF. We can't do it alone. We need you, each and every one of you, to believe in us, to support us, to join us or to lead us.

I'll end with a quote that sums up where I believe we are right now in healthcare. It's from one of my all time 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." We are all learning, and we each need to bring what we have to the table in order to learn what it is that we really need, and then use our experiences and our imagination to create it.