This collaboration post with Sara was initially scheduled to be posted on another diabetes website, but unfortunately plans changed. Rather than have that time and effort spent be for nothing, we decided to post it our own sites. As always, thanks for reading!
We were lucky to be among the ePatients awarded scholarships to attend Medicine X at Stanford, and while our expectations varied going into the conference based on whether we’d been there before, we can safely say that the 72-hour sprint in Palo Alto will be on our minds for quite some time.
Bottom line: Medicine X is a conference unlike any other conference we have attended. In attending, we both came away with a new sense of purpose and a greater understanding that patient advocacy stretches far beyond diabetes, or cancer, or chronic pain: as patient advocates, we’re truly in this together.
Throughout the conference, the patient participants took center stage to share their stories about how they are affected by the topics discussed. With patients seated in the first three rows, other conference attendees could not listen to a speaker or watch a presentation about a chronic illness or emerging technologies for that illness, without also recognizing the diverse representation of those chronic conditions sitting in front of them. This was definitely a big deal for the both of us. However, it meant just as much hearing comments in between sessions and reading tweets as the conference progressed that the strong focus on patients at this conference sets this experience apart from similarly themed programs.
One thing that we were struck by as we interacted with other ePatient participants is how similar the development of the diabetes community and the issues we face are to other represented communities. Generally, other patient communities also find support and information through scheduled weekly Twitter chats, consider the implications of interacting with their health care practitioners on social media, deal with misinformation about their diseases, and even experience divisions within their communities from the various subcategories of their disease. This was emphasized in the conference’s opening panel that Chris hosted, where several ePatients shared their stories and discussed common issues such as disclosure and the role of the patient in their own health care. The idea that you could “fire your doctor” may not be new to some in the diabetes community, but it was particularly enlightening for audience of health care practitioners and entrepreneurs in attendance on Friday morning.
Sara participated on a panel during one of the breakout sessions on how participatory medicine can help reduce medical errors. It was an interesting experience to have a patient sitting in between two doctors and having them all agree that increased participation between doctors and patients is actually a good idea. It was also helpful to have a dose of reality added to our conversations about the next big thing in medical innovation. Remembering that doctors are practicing medicine and that any medical diagnosis is difficult are notions that are often overlooked. Yes, we want more from our doctors, but our doctors are not magicians – just as managing a disease is complicated, so is professionally treating one.
Another interesting factor of this conference was the live video stream and very active Twitter stream using the #MedX hashtag https://twitter.com/search?q=%23medX&src=typd&f=realtime. Those online features made it possible for people anywhere in the world to follow along, propel #MedX to trending status(!), and even participate in the conversation. Most presentations and panels ended with time for questions and those questions were often selected from Twitter. One of the presenters humorously suggested that instead of looking for eye contact and waiting for a reaction during her speech, she realizes that today “Twitter is the modern day applause.”
Like any big conference full of so much brainpower and discussion, the biggest problem with Medicine X is that so much happens over the three-day adventure. Attending a break out session means you get to follow panels in the main hall on Twitter. Attending a Master Class means you may miss out on a walk-and-talk with one of the conference’s featured presenters (and Medicine X mascot Zoe Chu). It’s impossible to do Medicine X justice in a single blog post, but thanks to the hardworking staff at Stanford, videos of panels and presentations are being produced and uploaded every day.
Disclosure: We were awarded scholarships to attend Medicine X. These scholarships demonstrate the desire of Medicine X to incorporate patient participants in all levels of the discussion. We were not required to write about this conference, but after a weekend like that, it’s impossible to not constantly think about everything that was discussed.