For the past couple of weeks I’ve been sharing past episodes of my podcast featuring people I’ve met through or because of Stanford Medicine X. I still view my attending that conference four years ago as a fluke – Nick Dawson sent me a direct message on Twitter recommending that I apply, and after initially being waitlisted, I received a formal invitation to fly to California and stand shoulder to shoulder with some of the fiercest patient advocates around the world. Much of my 2012 Medicine X experience shaped my growth as a patient advocate within, and beyond the diabetes community. I started seeking podcast guests further beyond my comfort zones in an effort to learn and share more diverse stories. My Disease Secret, a platform which hosts the anonymous sharing of secrets, fears, and emotions from people impacted by diabetes, cystic fibrosis, chronic pain, cancer, sleep disorders, IBD, multiple sclerosis, mental health issues, lupus, or arthritis, would not exist without my participation in Medicine X. It may sound naive, but before Medicine X, I never recognized that various patient communities are fighting the same battles, that these advocates are working for the same goals – generally speaking, if you replace a couple of nouns and you can define the mission for nearly every patient community advocate.
Over the past four years I’ve spoken with CEOs of disease advocacy groups and non-profit organizations, Presidents of healthcare device manufacturers, entrepreneurs, and patient advocates representing an equally diverse range of diseases and advocacy methods. I’ve hosted conversations among educators, students, and healthcare providers. The fun thing about this journey I’ve been on is knowing it can go as far as I choose, and the learning potential is virtually infinite. While there’s so much I’ve already learned from all of these conversations, the possibilities in the months and years to come are equal parts exciting and terrifying.
Exciting because sharing these stories reinforces my beliefs as an advocate. Story sharing is what I do best. Everyone has a story to tell, and every story is worth telling. Through my podcast, and other online efforts, I’m just doing my part to help spread the word.
Terrifying because I don’t know what opportunities await me. Because there’s always that lingering doubt that resides inside me before I press record on a new conversation. The impostor syndrome that envelops me before I step on stage is suffocating, but I’m getting better at letting those moments wash away just as easily as they arrive.
When I look back on my contributions to Stanford Medicine X, I hope others see what I brought to the broader conversation. As I took on a bigger leadership role within the conference, my focus turned to the incoming ePatient delegates. I did my best to make sure they felt comfortable in a space that can be overwhelming at first by offering fist bumps, high fives, and words of encouragement to anyone who needed them. The stories of these delegates are the defining moments of each conference, so I did my best to ease the tension and make everyone feel as comfortable as possible to ensure their respective moments in the spotlight were the best they could be.
Stanford Medicine X represents a tremendous professional and personal growth for me. Every year I arrive with nervous butterflies and leave with my heart full of love and head full of ideas. I can’t wait to see what this year’s conference brings.
And now, I have to apologize. The audio you’re about to hear should have been shared with you a long time ago. In June, Dr. Larry Chu and the rest of the Medicine X team hosted an event at the White House. Yes, that White House. The focus of the event was engaging participants as partners in research in support of the President’s Precision Medicine Initiative. In the spirit of Everyone Included, the framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity, the details of the workshop were developed collaboratively with patients, providers, researchers, entrepreneurs, and White House staff.
Attendees represented a who’s who of patient advocates, innovative professionals, academics, and passionate individuals among global healthcare conversations. The workshop was designed to identify what’s working in research, strengthen the community of innovators in this space, and accelerate progress of engagement in research. In some ways, this event could be seen as the pinnacle of achievement for Stanford Medicine X – a conference that has come to define inclusivity and respect across the entire healthcare spectrum designing a collaborative conversation featuring singular patient perspectives, far-reaching federal policy perspectives, and everyone in between. After the workshop concluded, I collected feedback and thoughts from some of the participants with the hopes of sharing them in a future podcast.
However, I struggled to wrap my head around how to frame this conversation. Really, I feel there’s nothing I could say to properly articulate the magnitude of this opportunity. I remember when it used to feel special to sit in a room where patients and providers were treated as equal, now that’s expected in every healthcare conversation I participate in. I used to wonder what good all of our advocacy efforts could truly accomplish in a complicated world of rules, regulations, and politics – but now we’re discussing the future of participatory medicine and research at the White House.
So here’s my pitch to you. If you want to participate in the conversation on Twitter, look for people using the hashtag #MedX. Follow them. Ask questions. Engage. These types of conversations only work when everyone listens, when everyone participates, and when everyone is included.