Skinny jeans are a surrogate marker, Nick Gross was not who I expected, and the e-patients are even braver than I thought. Listening to the Club Med X play list (selections at bottom), I found myself reflecting on the things I learned, who I spoke with, and what inspired me at Stanford Medicine X.
The Things I Learned
Bringing the science/citizen science
Scientist and wine aficionado Ian Eslick (@ieslick) was the first winner of my daily ‘Bringing the Science’ (BtS) award at Med X. He explained how his own condition of psoriasis informed and affected his approach in creating the first MIT-run authoring experiment. The purpose of the experiment is to study “how patients think about self-experimentation and figuring out how making changes impacts them” at PersonalExperiments.org. He also opened the door to the n-of-1 vs epi debate and the idea of future sampling.
The next day CEO of Asthmapolis David Van Sickle (@dvansickle) claimed the coveted (albeit fictitious) BtS award with his fantastic marriage of humanizing the process of research with almost zealous inquisitiveness. He shared the origin of his obsession of “stalking asthma” from Navajo villages to Alaska and then to the CDC where the limitations of public health data and the role of technology were crystallized for him. Van Sickle went on to describe his excitement about the role of mHealth in preventing diseases in populations. Acknowledging that I may have sipped the Kool-Aid when it moved into mHealth for prevention, you must watch his 15 minute talk. “The hardest cause to identify is the one that is universally distributed.” Indeed.
Rhiju Das was the very next speaker discussing EteRNA, which necessitated creation of the ‘Bringing the Citizen Science’ faux-ward. His Das Group at Stanford in conjunction with Carnegie Mellon challenges citizen scientists and gamers to create RNA sequences that fold into target shapes via the interface they’ve developed. Interestingly, in part due to Das’ involvement as part of the team that created Foldit, EteRNA is seen as its successor by some.
Role of design and UX
So, it turns out design isn’t just for architects and frogs anymore. I had some feel for the roles of human-computer interaction and behavioral health design from working with researchers and others like Tonic. However, I was blown away by the roles of design and UX ranging from the seemingly mundane (e.g., hospital equipment) to the ambitiousness of the IDEO Design Challenge Workshop to its potential in transforming children’s fears about nebulizer treatments into nurturing moments.
Self-trackers and Quantified Self
Before the Med X Self-Tracking Day, I was peripherally aware that people like @FredTrotter were hacking away at things and tweeting their weight and that Ernesto Ramirez (@e_ramirez) was causing waves in something called Quantified Self. But I definitely did not realize how widespread self-tracking is until @SusannahFox debuted her new Pew data (re-defining it for much of the crowd), nor did I appreciate how creative (@nancyhd; Winner: Best smile-powered LED headdress) or dedicated (@bettslacroix) some of those involved are. This is an area worth exploring for future research and I’ll be curious to see what comes of some of the specific efforts such as MyMee.
Who I Spoke With
Surprises and plans
Just because it seems cliché to say that the best part about conferences are often the hallway conversations doesn’t make it any less true. In this case, the Medicine X First Look video archive of the entire conference goes a long way for those who couldn’t make it…but being surrounded by the attendees of this conference conferred an entirely separate set of benefits and opportunities. I had a series of eye-opening impromptu meetings and promising conversations. One was with Nate Gross (he of the minimalist Twitter handle @NG; co-founder of Rock Health and Doximity) at a group dinner. As I have zero feet in the business world and most of my business savvy comes from having watched the movie Wall Street in 1987, I was sort of resigned to sitting next to a brusque, bottom-line type. Instead, I found him to outwardly be a more contemplative sort who spent more time observing than speaking…or maybe he was just happy to be seated next to someone who didn’t have something to pitch.
Most of my other notable conversations portended more specific possibilities. I found myself in one sitdown listening to opportunities described on the fly between AMIA Fellow and researcher Qing Zeng-Treitler, Medify’s Derek Streat, and Alliance Health’s David Goldsmith (@dsgold). Later I enjoyed an intial exploration with Sarah Kucharski (@AfternoonNapper) about extending the role of the patient in research design. That was a conversation I suspect will continue.
What Inspired Me
Two people and an object
Unsurprisingly, it was the people and their stories at Medicine X that I found most inspiring. Many of the Ignite talks by the e-patient scholars were personal and touching, but I found two people particularly so. Sean Ahrens has taken his own story about Crohn’s and literally built a community for others suffering with the same struggles in Crohnology. It’s amazing to me that someone with a potentially debilitating condition refuses to cave to its daily demands and instead sources it to create a virtual bridge to connect and benefit others.
The other person is @DanaMLewis. Personal bias aside (see panel slide deck), to have a person at her age & stage create another type of virtual community in #hcsm that has such far reaching effects that it even inspires Alicia (@stales) Staley (herself quite the wow-inducer) to create #bcsm is immensely encouraging to me.
Youth. Creation. Connection. Wow.
A different kind of enchanted object
Watching David Rose of Vitality present at the mHealth Summit introduced me to the concept of the ‘enchanted object’. At Med X, I saw a more literal version of this implemented in the form of the Magic Mask. The Magic Mask used augmented reality tech and lessons from IDEO to transform what can be a frightening experience of nebulizer treatments to a parent-involved storybook time for these children with asthma. Trust me, you’ll want to read the full description of this work by @RoujaPakiman and @LucieRichter here.
Our Panel and Fin
An e-patient, an entrepreneur, and an academician collaborate to conduct research. In our panel, @DanaMLewis, @BorisGlants, and I tried to share our lessons in adopting the participatory design model for research. Hopefully we were able to inform a bit about misteps and successes and provide a dash of inspiration so that more patients and researchers will partner to capitalize on the strengths of each other.
I have been to a lot of conferences, and no one puts the level of thought and care into each detail of a conference like @LarryChu. This was a stellar experience that I look forward to next year!
Club MedX Playlist (selected songs)
Harvest Moon – Poolside
Night Falls – Booka Shade
Pharaohs – SBTRKT
4 years – Kid Savant
Rocket No. 3 – A Rocket in Dub
Skylight – Gramatik
Save the World – Swedish House Mafia
Shuffle a Dream – Little Dragon
Somebody That I Used to Know (feat. Kimbra) – Gotye [h/t @iam_spartacus who told me who the artist was, as I am old and thought the chorus was Sting]
TC (Theft Citation i.e., where I stole this post title from): I read @SusannahFox’s post on Stanford Medicine X. As with many of her posts (and I think she would agree), some of the best value is in the comments. In this case, it was the contribution by David Goldsmith who pointed out that Med X is the rarest of birds in that it managed to both inform AND inspire.