Emily of Emily’s Entourage highlights the most impactful parts of her experience as an ePatient at Stanford’s Medicine X Conference.
The Stanford Medicine X Conference was a whirlwind, to put it mildly. It was a completely energizing, life-changing, passion-fueling experience that exceeded my wildest expectations – and they were high.
I’ve been trying to capture even a piece of the amazingness in writing, but I’m a reflector, a slow digester (CF pun intended), and to be completely honest, it is taking me some time to process the enormous amount of information, connections, emotions and ideas that I experienced during my time in Palo Alto.
So, in my ardent attempt to do the experience justice and not let the perfect[ionism] be the enemy of the good, I’d like to share my top 7 most meaningful moments at Medicine X.
1. The privilege of being part of the ePatient Program.
It was a “disease agnostic” group comprised of some of the smartest, strongest, most resilient, caring and passionate people I have ever met. We came from diverse backgrounds, had different diseases and spanned a wide range of ages, races and personality types, but what we shared transcended all our differences. It bonded us at a level so deep and personal that I think it caught us all off guard. I’m honored to have been part of such a spectacular group of people who, literally, move mountains as a side job, and I’ll forever cherish the powerful lessons they taught me about life, love, dignity and bold, audacious dreams.
2. Dr. Marc Katz’s line – “Did I get it?”
The first day of the conference started with a bang. Dr. Marc Katz, chief medical officer of the Bon Secours Heart & Vascular Institute, shared that after last year’s Medicine X, he started asking his patients at the end of their visits, “Did I get it?” The humility, respect and compassion of such a simple question knocked me off my feet. And just like that, I realized – these people really get it and I’m exactly where I’m supposed to be.
Dr. Marc Katz: “Ask the patient at the end of our visit: ‘Did I get it?'” <=From a cardiac surgeon!! #medx
— Dave deBronkart (@ePatientDave) September 27, 2013
3. Meeting healthcare social media trailblazers.
Virtual connections are wonderful, but there’s nothing like meeting people you have long admired on twitter in person. It was an enormous thrill and honor to meet people like Susannah Fox, Dave deBronkart (“ePatient Dave”), Regina Holliday and Larry Chu, and to see the amazing Wendy Sue Swanson (“Seattle Mama Doc”) again. Our in-person introductions reminded me that nothing supplants “in real life” interactions.
4. Having my mind blown by visionary change-makers.
Between talks from Jack Andraka, who at 15 years old founded a quick, low-cost method of early detection for pancreatic, ovarian and lung cancer, and Venture Capitalist and Sun Microsystems Co-Founder Vinod Khosla, who speculated that machines will replace core healthcare provider job functions by 2025, my head was spinning in complete awe. They challenged me to think bigger, defy boundaries and always keep pushing to make things better.
5. Being mentored by ePatient superstar Britt Johnson (aka @Hurtblogger).
It was Britt’s “ignite talk” that sealed the deal for me when I was browsing the Medicine X website for the first time. Her grit, pain and good humor felt so real, so familiar, and, in some strange way, so refreshing. I was overjoyed to learn that Britt would be my Medicine X mentor. Our Google hangouts were the best. We laughed, we shared, we commiserated and I think most of all, we understood. I learned so much from Britt and I felt enveloped by her support every step of the way.
6. Learning from a true master, Susannah Fox.
She’s so humble that she refused to think of herself as a teacher, instead referring to the class as a “simcha.” But anyone who knows anything about social media and healthcare and especially anyone that knows Susannah knows this woman epitomizes mastery. I can’t think of a person from whom I’d rather learn. I gained so much insight about participatory research, the topic of the master class, and all its components, including listening, being a gracious hostess, punching windows into walls, remaining open, and strategies for facing the many challenges along the way.
7. Having a coughing fit during closing ceremonies and not feeling embarrassed.
In fact, I was grateful. I was grateful to be in a place where I could cough freely without shame or weird looks, where I didn’t feel like a sickly person masquerading in a healthy-looking body and where people knew and embraced my ePatient status. I was grateful that as soon as I erupted in my coughing spasm, swarms of fellow ePatients offered me water bottles and checked to make sure I was ok. That level of comfort can only happen when you feel completely at home and at peace with all parts of you, including the sick and not-so-shiny parts, in a place where you know you really belong – disruptive coughing fits and all.
Huge, heartfelt thank you to all the organizers, volunteers, sponsors, attendees and especially Dr. Larry Chu for making this conference such an extraordinary experience.
You can watch Emily’s inspiring ignite talk at Medicine X about Participatory Medicine here. Also, if you want to read more about this year’s conference, here’s an awesome recap from Stanford Medicine’s Scope Blog.