Thursday, September 17, 2015

Hope as a primary motivator

School is finally off the ground and other than one mid-day pick up of a puking kid and a handful of forgotten lunchboxes, we seem to be off to a good start. I've had a lot more consistent time to work and to think about my work and what it is that I'm doing or hoping to do and how I'm hoping to do it.

MedicineX is coming up next week, and along with a panel of colleagues, I've been invited to share of my experiences with the C3N and the opportunity that I think it presents for the future of medicine. Reflecting on this - what is the C3N? What does it mean for me? And for you?  - really got me thinking about the purpose or value of all I'm involved with. What is the power of all of this? Why do I believe in it so strongly? And why haven't I been able to help others see what it is that I see with such clarity? 

So what is a C3N (Collaborative Chronic Care Network)? In my opinion, it is a way to organize new and existing stakeholders and resources in a disease community around a common vision to amplify value and improve outcomes. And what does that mean? That's the tricky part. I first thought that it was about tools; what do I have and use and know about that helps me, and how can I share that so that it can also help you. This is no-doubt valuable, but thinking deeper, how did I learn about those things, and how do you learn about those things. Or finding "the best" tools and resources and making them available in a different way. But much like clinical research, the value is not in the published paper buried inside of some journal or identification of what is "best", but in how that knowledge is applied, modified, learned from and spread. 

Perhaps one of the most valuable statements I've heard in regard to this C3N idea was a diabetes dad [sidebar: who is amazing] who said something to the effect of, "We (patients/parents) always need to know whats next, and no matter how much medical information the medical system gives us, we turn to our peers. We need their experience and their stories to heal us so that we can move forward." And then, I was reading this book by Brene Brown called "Rising Strong" (go buy it right now), and she talks a lot about how hope is or can be a motivator; "I’ve found that moving out of powerlessness, and even despair, requires hope. Hope is not an emotion: It’s a cognitive process—a thought process made up of what researcher C. R. Snyder called the trilogy of “goals, pathways, and agency.” Hope happens when we can set goals, have the tenacity and perseverance to pursue those goals, and believe in our own abilities to act." And I thought YES! Yes! That is it!

For a long time when I was one of the only parents involved in the CF group, we talked about needed more people like me. I remember hearing Paul Batalden at one point say that hope is the primary motivator for co-production and I think I’ve always had a lot of hope. But how do we help others to hope? I don’t think it’s that others don’t have hope and that’s why they’re not involved, but rather they feel powerless. C3N provides an opportunity to move out of that powerlessness, allowing that hope to help us to move forward. This is what I think we need to really pay attention to. If hope is the key, and I believe it is, then goal setting, tenacity perhaps through empowerment, storytelling and people connection,  and belief in our ability to act are where we should be focusing our attention and effort. 

Maybe this is where the power of MedX really lies. Maybe its not the cool innovators and disrupters who fascinate us with the novelty of their thinking, but the connection, the empathy, the shared humanity, the hope. Its the people like me in the trenches with our feet on the ground and our head in the clouds, both patients and clinicians and researchers, all sitting at the same table focused now on what we need to do next, knowing that we'll support one another no matter what and in any way we can. I cannot wait to be among my people next week!! I cannot wait to learn more about what their hope is motivating them to do, and how I can build on their hope in my only life. I cannot wait to laugh and cry with my friends from the internet, the people who I see but once or twice a year, yet feel closer to than some people I see everyday. Everyone deserves this feeling, and I believe everyone is capable of achieving it. We are the hopeful, and we will prevail! Here we go!!!!

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