Stanford Medicine X – a patient-centric academic conference. I wasn’t sure what to expect, and while I was absolutely honored to be a part of this, I didn’t know how it was all going to play out. This is how I broke down what I was going to experience in my head:
Who: me, as an ePatient
What: share my ePatient story of going from a passive patient to a patient advisor on a clinical research team (http://mpowercare.org/2014/08/mpowers-very-own-epatient/)
Where: Stanford Medicine X 2014
However, I realize now that there was no way for me to fully understand the most important component — the why — until I experienced Med X first hand. Why did I want to do this? What motivated me, and my fellow ePatients, to go further and discover something like Med X to share our stories?
Why: there is a dire need for patient engagement in medicine
The overwhelmingly emotional stories, inspiring patient-led innovations, and sheer amount of calls for action to promote engagement showed just to what extent this was true. All of us in the ePatient program had different paths that led us to Medicine X, but this need was something every single one of us came to understand personally. Because active patient involvement is not the current standard in medicine, there were consequences in the care we received and to our health. It should not be that way, and it really does not have to be. We have invaluable knowledge and the power to help change the system to a more patient-centered medicine.
Before Med X, we all had our own ways of working towards this mission. An academic conference is a place for researchers to share their work and network, in hopes that this collaboration will help further develop their work. At Med X, this was exactly what ePatients were did – sharing our experiences, stories, and learning from each other how to further promote engagement. Each of us had our own vehicles as ePatients (e.g. self-tracking, blogging, social media, community outreach, tech development, research, etc.), and each of us had something to contribute to the conversation. mPOWEr was (and still is) my medium for patient engagement, bringing the patient voice to everything we do, showing that a patient can be an integral part of a clinical research team.
Working on the mPOWEr project, I learned that my patient experience is my expertise. Attending Med X, I had the chance to share how I’ve used that expertise to become an active contributor to medical research in hopes that it will inspire other ePatients to become involved in research. Also in those short 3 days, here are just a few examples of the things I’ve gained from interacting with ePatients:
- A sort of Twitter boot camp, gaining insight into another way I can interact with my community
- Ways to use self-tracking to better manage your health and become active in the care team treating you
- Simple coding to design tools to monitor your own health data in a way that actually becomes useful in managing your own condition
Medicine X was our shared vehicle for patient engagement, to a grand scale. On a final note, I tweeted this the first day of the conference, and it remains true: