Monday, October 12, 2015

My #MedXHangover

You may have noticed I haven't been writing as much lately. There's so much I can say about Stanford's Medicine X conference, and so much I still can't put into words, that it is hard to sit here and try to write about such a life changing time.

Photo courtesy of Kristin Coppens
How do you even put into words how amazing it was to spend time with these awesome patients and parents? How do I try to explain the vast amounts of information that I'm honestly still trying to soak up? Timeline it?

A few days before the conference I met with Gilles Frydman who takes amazing pictures.


I mean, seriously though.


I wish I could pay Gilles to follow me around and catch great pictures all the time! We talked patient engagement, religion, Middle Eastern politics, and changing healthcare obviously.

The day before our involvement in MedX began, I picked the amazing Kenzie up at the airport and, after some goofs, we made it down to Palo Alto. We were both exhausted - Kenz from traveling and me from staying up all night working on a paper - so we retired to our rooms and enjoyed the amazingly comfortable beds. I also may have eaten a delicious pizza while watching Harry Potter.

The next morning we excitedly headed on over to Stanford.

My inner child was screaming. I always wanted to be here at one of the best schools in the nation. But to be here with some of the coolest people? I can't even.


We got to participate in the Design for Behavior Change workshop with Dr. Kyra Bobinet.


We broke up into design teams and worked on ways to improve healthcare. My group came up with a great idea to get an international database of expert patients similar to health coaches that we can refer others to for help, along with a way to get patients certified as experts. Lots of organizations are interested in the idea and I'm excited about the possibility that it could happen. I think right now it's a matter of organization.

That night, us ePatients met and enjoyed each other's company. It was wonderful to spend time with some of my heroes, and to meet new ones.

Friday started MedX proper. Like at any good camp, Dr. Chu reminded us all to take a breath at the beginning. We recapped last year via Symplur stats. There was discussion on telehealth, on-demand medicine, rare diseases, the importance of community and health, misconceptions, and more.

Throughout the conference, We learned about the patient revolution and heard from patients working towards that state.


One of those speakers was my amazing roommate Cyrena, who spoke on her experience with mental and physical issues. There wasn't a dry eye among the patients when she was done.


And rightfully so.

Then it was time for more pictures.

Courtesy of KERN

Then I utilized the wellness room, which I *so* miss being back at work.

I made lifelong friends among all this amazing medical chaos, like Danielle, mom to a sweet girl with a congenital heart defect like our Sammy.


I heard about organizations like RateMyHospital which is giving the university I work at new ideas on collecting patient feedback in real time unrelated to the federally mandated surveys. There was a discussion on sex and intimacy issues, something that I'm hoping to do more with #chronicsex and CreakyJoints.

Afternoon Napper, Karolyn of #hospitalglam fame, and other amazing peeps
Together with Roni Zieger and others, I designed kits to help learners know what it's like to live with an illness.

I was able to attend a masterclass Roni put on as well on the role of peer-to-peer support, and I hope that we changed some minds in the room. And so many patients attending this session to hear from Britt on why she started #ChronicLife.

We spent time trying to forget whatever crud was going on in our lives and just enjoy each other when we could.

Leslie Rott and Joe Riffe = love
We traveled in packs.

Photo courtesy of Ally VeryLightNoSugar
We took silly selfies.

We had a patient pizza party Saturday night organized by yours truly which included charades and more. I talked with Dr. Chu on his Madison roots and how we love the same Venezuelan place. Cyrena and I stayed up designed weird experiments in our heads when we were far too tired to be functioning.
That's so much to go over, but it isn't everything.


The one thing I can explain is the before and after of MedX. Before attending, I wasn't sure I was worthy of being there - something that seems to be echoed by other patients as well. Participating in the Design for Behavior Change workshop helped cement some of that, in that my group came up with an amazing idea working together.

Meeting some of my friends from online groups helped a lot - putting faces and voices to names, exploring philosophical debates and weird instagram accounts, and just being hella silly while medical at the same time. We could discuss changing healthcare over pizza and gin & tonics while playing charades and taking medications.

Where else in the world could that happen but MedX?

Even more than that, I met people who were excited to meet ME. I'm just a funky girl who lives in Wisconsin and has weird diseases. Why in the world would some amazingly influential people be excited to meet little old me?
And then I realized, partly due to Charlie's speech, it's because I *DO* belong here.

I do a lot more I think than I give myself credit for, and that's been echoed by people I've met now afterwards to discuss MedX ideas to apply here in our HC system. I think I needed to be reminded that I matter, that what I do matters, and that it all makes a difference.

Perhaps one of the best ways to explain the experience is to describe what the X stands for in MedX, and expand on that: "The 'X' is meant to encourage thinking beyond numbers and trends - it represents the infinite possibilities for current and future information technologies to improve health." It helped me, too, as a patient and as a person, learn that I too have infinite possibilities - that I can change the world. For now, I'll start with the University of Wisconsin health system... but who knows where it'll go from there.


I want to say thank you to the Kadry Foundation, the amazing sponsors that help with MedX every year, Gilles & Kern photography for taking great pictures of me, and of course the other ePatients, volunteers, and the executive panel as well as Dr. Chu. This conference blew my mind in the best way and helped me refocus on my local community.

Note: My attendance at Stanford's Medicine X conference was in part funded by the Kadry Foundation, but all opinions here are my own.

Also also I apologize if I left you out of this post! My brain can't handle the awesome.

1 comment:

  1. Kristen - What a beautiful post! I didn't know what the X stood for, so I really loved learning that. There is truly so empowering about being at this conference and realizing, oh yeah, we do belong here!! I hope to spend more time with you at next year's conference. Keep rocking and rolling making change in Wisconsin. Your fellow ePatient in Los Angeles, Julie

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