For the first time in many years I will not be attending the Medicine X conference at Stanford. I will miss the people, the inspiration, and the sunshine of course, and I’ll certainly be following along closely from my remote perch in Burlington, VT. Though I’ll be watching from afar this year, likely with a distinct feeling of FOMO, I’ll take some comfort in knowing I’m doing my best to live the MedX dream. Let me explain.
To me, Medicine X is more than an event; it’s a lifestyle. Medicine X and the organizations and people who comprise it have a few things in common; they’re patient-centered, they have a problem-solving approach, and they’re inclusive, collaborative, and participatory. These principles are ingrained in my own approach to my healthcare, my work as a healthcare experience designer, and my side projects and volunteer work. My involvement with the people of MedX gives me strength, courage and confidence to speak up for what I know is right.
What does it look like for me to live #medx as a patient, designer, advocate, and organizer? (Obviously this will be different for everyone.)
- Work collaboratively with doctors
I always treat all doctor visits as collaborator meetings; I come prepared with an agenda and hopefully some visual aides.
- Facilitate connections between people and ideas
I co-organize a healthcare innovation meet-up group in Burlington, VT that is open to anyone (doctors, patients, entrepreneurs, academics, designers, alternative practitioners, etc.) and has almost 400 members. Medicine X is all about the intersection of people and ideas, and our meetup group has been very successful at this.
- Bring patient voices into healthcare events
This year I have done a little work helping organize a healthcare technology conference, the VITL Summit, which will be held in a few weeks in Burlington. I helped advocate for patients to be included on panels and to give ignite-style talks during sessions, like at MedX. We are nowhere near the #medx philosophy of ‘patients-included’ (or even ‘patients first’) but it is an awesome start!
- Help patient communities connect and learn from each other
Part of my decision not to attend the conference this year was because the first ever ‘MG Walk‘ will be held in Vermont on the same weekend. MG stands for Myasthenia Gravis, the rare autoimmune/neuromuscular disease that I have had since I was 13. The walk is a chance for me to raise money for a cure for my condition and finally meet more local folks in the northeast who have MG. Along with another patient, I am also planning a regular in-person support group in our area.
- Design better solutions for healthcare problems
As a designer and patient working in the healthcare field, I am in a unique and privileged position of being able to both intimately feel the pain of our current system, and to be able to actually do something about [some of] the problems I see. One of the most exciting things that has happened recently has been the chance to work as a UX Strategy Consultant with the University of Vermont (UVM) Medical Center, an academic medical center right here in Burlington. And actually just a few blocks from my house. Since I began this work about two months ago, I’ve had the chance to meet with and observe patients, caregivers, doctors, nurses, billing representatives, and more. I experienced the euphoria of going through research and design cycles around topics that mean so much to me, and I’ve done more interviewing and observation in the past two months than I’ve done in the past year. Our projects have already made some great progress, and I’ve seen how small improvements can make a huge impact both to the experiences of medical staff and patients. My teams couldn’t have made such quick progress without the support, advocacy, and open minds of the folks at UVM – they did not know that they were also living #medx. In this role, I find myself naturally talking about and advocating for topics that mean a lot to me – open access to health information, OpenNotes, etc. Sometimes I feel a little bit like an embedded spy, or a mole or something.
- Help other patients express themselves visually
For a long time it’s been a side passion of mine to help other patients express themselves and communicate better using visual means. Just recently I’ve started volunteering up on the Adult inpatient unit at the hospital with a program called Art from the Heart, which offers art activities to inpatients. I’m just starting out, but I’ve already seen how art can bring joy, calmness, and that feeling of ‘flow’ to patients. Beyond this, I’ve continued to work on visual experiments for communicating my health to my doctors, and I’ve been putting together a PDF template for people to print out and draw symptoms and health information on. I’ll be finding a home for it on my website shortly.
- Help patients tell their stories
As part of the Prescribe Design series, I’m helping to organize a group of amazing patient-designers and makers to tell stories about their experiences creating solutions for their own healthcare problems. It’s called ‘Patients who Design,’ and it’ll be coming out in a few weeks.
It can be a challenge to balance these fun projects and give them all the attention they deserve, but it has been a true joy to collaborate and connect with amazing and talented people on all of them. I am lucky to have such satisfying and personally meaningful work, and to find it locally.
The point of all of this: although I need to miss #medx this year, it is always living inside of me.