Dr. Larry Chu, creator of Medicine X, called the conference summer camp. For me, it was more like boot camp. Prior to the conference, I considered myself a very informed and engaged patient. However, after spending 3 days with some of the most intelligent and inspirational people (who happened to be patients), it was apparent that in terms of “e-patient-ness”, I was a rookie. Medicine X gave me a whole new understanding of what it means to be an e-patient.
Bootcamp started with directions to tweet. I’ve had a Twitter account for a few years, but had only recently taken the plunge to re-tweet some of my favorite posts from @SusannahFox and @Bob_Wachter. So, on Day 1, with great trepidation, I sent out my first live tweet – and 7 subsequent ones – not bad for a major introvert and social media newbie.
The second test was taking in and processing the enormous amounts of information shared – so many interesting topics crammed into so little time. On a personal level, the patient presentations that resonated most for me were the ones delivered by fellow patients with rare disorders. Brett Alder (@AlderBrett) spoke about not being able to find a community when you don’t have a diagnosis and is now launching his own site to fill that need and Sarah Kucharski (@afternoonnapper) admonished us patients to appreciate and care our caregivers as much as they care for us. However, it was the talks by Dr. Leana Wen (@DrLeanaWen) about returning to the basics of the patient narrative and Dr. Kirsten Ostherr about using multiple forms of media to help patients and doctors communicate more effectively that spoke to my professional passion. While technology promises to change how patients manage their own health and engage with the healthcare system, at the end of the day, healing and medicine will always rely on the human connection formed between patients and clinicians.
The purpose of boot camp is to teach the basics and prepare recruits with the skills they will need when they return to the real world. I am grateful to Symple creator and founder, Natasha Gajewski (@SkiNatasha), for providing me a venue to share my e-patient story and facilitate a discussion with both clinicians and technologists about how patient-generated data can improve communication and decision-making. Having the opportunity to participate in a thoughtful, cross-disciplinary discussion was one of the most enriching and fun aspects of the conference and gave me a springboard from which to launch from.
While I can see the summer camp aspects of MedX (from the M&M trading to the walks with Zoe), I will always remember the conference for elevating my understanding of what patients can contribute and equipping me to expand my efforts for making the patient voice heard in my world.