Let me preface this by saying that I'm grateful to have been one of the thirty-ish people invited to attend. I didn't have to pay for any of my travel expenses to get there, for my hotel stay, for the food I ate while there, for the minor league baseball game that the majority of our group attended, or for any of the goodies in my swag bag. It makes me feel incredibly lucky to have the opportunity to do something like this, and I remember well how it feels to be on the outside of what can sometimes appear as a "party with my friends". I've been in a near-continuous state of amazement for the past two years that anyone cares to know what I think about anything.
Some of the discussions at the Summit had great benefit, both for Roche and for those members of the DOC. The speakers Roche brought in were phenomenal. The brainstorming we did produced some productive ideas - at this point, still just ideas. I hope they blossom into something more than just words.
Advocating, at its core, is about people. It's about relationships. It's about striving for better outcomes and health; for helping things to get better for us, and for others. People choose to advocate in ways that are comfortable and meaningful for them. They do what they can with what they have, and often strive for better than that. That's how it should be.
When I found the DOC in 2009, the "people getting invited to stuff " thing was already the norm. Relationships between influential patients and pharma companies had already begun to form. While these events (and who went to them) weren't what I was mainly concerned with (and still aren't), they were on my awareness radar.
What I've been grappling with lately, and what I hope you'll pause to consider along with me, is what I perceive to be a shift in priorities. I think it's good to have events that bring patients face-to-face with both each other, and with those whose business it is to provide the market with tools and options that can help patients manage their health. What makes me uncomfortable is how we do that., and it's a two-fold dilemma.
The first is how these events are handled. Was it lovely to be able to stay at what was probably one of the nicest hotels I've ever been in? Yes. Was it likely the best use of Roche's money? Perhaps not. What if we bare-bones this thing? What if we all stayed at a Holiday Inn and used the surplus to do some social good - donate it to a charity, pay for some sort of community-enhancing effort, funnel it into a patient assistance program? Would we still be able to accomplish something; would we still have those same conversations? I sure hope so.
I hope I'm not the only one that would go along with this idea.
The second part is less easy for me to articulate, but I'll try - with a hat tip to Louis C.K.
"Everything is amazing, and nobody's happy".
I want us to remember this phrase when we worry that our blog hits, Twitter followers, or pageviews aren't "high enough".
I want us to remember this phrase when we are so ridiculously lucky to be at an event that so many thousands of others can't afford or weren't invited to, and choose to complain, in a space where so many of those thousands can see, about how bored we are.
I want us to remember this when we don't get the reaction from others that we think we deserve; when we become frustrated with technology; when we believe that the world owes us something simply because our lives and health are not in line with what we expected.
When we do these things as advocates, I hope we can check ourselves (before we wreck ourselves): does this go back to people, or is this just about me?
Do you know how lucky we are to be on this Earth, right here, right now? We have machines that can connect us, FOR FREE, to millions of people all over the world - and we can talk about whatever we choose. We have tiny computers that can fit in the palm of our hands, which by some combination of magic and science can tell us what our bodies are doing. We have insulin to keep us alive. We can consume tiny bits of medicine that help our bodies function. We can use a seat in the sky to get us anywhere in the world we want to go. We are here - NOW.
We have language and the means to use it to comfort, console, inspire, and enlighten each other. For as much as there is wrong in the world right now, there is so much right. There is so much good. And when we focus on each other - on what we can do to love and help others - we can become something much bigger. Much better.
We have each other.
I hope you remember how amazing that is.