I am proud to announce that I have been named a Stanford Medicine X 2015 ePatient Delegate! Stanford Medicine X is a patient-centered conference that explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The Medicine X community unites all healthcare stakeholders – patients, providers, researchers, and technologists – in a year-round program of online events and classes at Stanford University, culminating in an annual conference at the Stanford University School of Medicine in the Fall. I am eager to be a part of this program because I want there to be more neurological representation, specifically brain tumors and epilepsy, in this emerging healthcare conversation and arena.
Not only is this a tremendous honor, but it is also an example of how advocating for, and creating your own health community can open incredible doors. When I started blogging and tweeting about my health experiences a few years ago, I didn’t envision #BTSM (brain tumor social media) Chats. When Liz and I created #BTSM Chats 2.5 years ago, I knew it would have an impact on an individual level, at least for the two of us, and hopefully for a few others. But now, we have the opportunity to reach people on a global level more than ever before.
There are three tracks for Medicine X ePatient Scholars, each of them with their brief and respective descriptions below.
Engagement & Producer Track: Share with others knowledge gained at Medicine X, and produce original content via social media while at the conference and after.
Presenter Track: Use your patient voice to help share and spread knowledge to educate and inspire others by speaking at the conference.
Design Track: Work with a designer from IDEO to brainstorm and create a solution to a self-identified problem using the collective knowledge and creativity of a team of fellow conference attendees in one day prior to the 3 day conference.
I thought that the safest bet for me to apply to would be the Engagement & Producer Track given my history with social media. I’m on my phone and or laptop all of the time, and my job revolves around social media marketing. It would have made the most sense for me to apply to the Engagement & Producer Track. But, I decided to stretch a little. There are countless sayings about getting out of your comfort zone in order to succeed, so I did. And, the best way for Liz and I to get our ideas across about #BTSM and brain tumors in general together would be to apply to the Presenter Track, together. Unfortunately, Liz was not accepted as a scholar this time around. It is now my responsibility to bring the voices of the brain tumor community with me. I am not the ePatient Delegate, we all are. I hope to gather any type of information that I can throughout the coming year that will answer questions, create solutions, and provide opportunities for community engagement.
Public speaking used to be my biggest fear. There was a presentation I gave for an English class my freshman year of high school where I stood in the front of the room, bawled, and pressed the spacebar to move from one PowerPoint slide to the next for a solid ten minutes. There was a mandatory speech class students in my high school had to take the following year, and I dreaded it. I imagined myself crying during class, and then thrown back into the halls to head to the next class in tears. I was so scared that I found a way to take the class in the summer instead. The class was much smaller, and, the teacher was a cancer survivor. We bonded over advocacy, and I somehow made it through the entire course without crying once. I was amazed, and my friends were too. I definitely felt more comfortable sharing and speaking in her presence with the knowledge that she too had memorized the wallpaper of waiting rooms. I haven’t cried while public speaking in four or five years now, but public speaking does still make me nervous, as it does for most people. I delivered an Ignite talk at ASU last semester, and I was calm, cool, and collected throughout.
When I mentioned this incredible opportunity to my high school friends, the first text message response I received was (direct quote): “AFTER THE WHOLE FRESHMAN ENGLISH AND SUMMER SPEECH CLASS FIASCO? *cries of proud*”
I’ve come a long way since then!
I started to set “long term” goals last April. Applying to Medicine X was one of them. Up until then I was having a hard time allowing myself to think two months in advance, because I was so afraid of what the next MRI would show. Following through with this goal, and snagging an application victory, really speaks to the progress and adjustments that I’ve made. I am starting worry less about what my brain tissue is doing, and as I look into the future, I’m seeing new goals sprout up. Accepting this commitment means that I am actively shifting my lens from solely focusing on my experiences, to focusing on what my experiences means in the context of a bigger picture: the future of participatory medicine.