Med X: Now with even more glow sticks and ePatients!
It’s always tough to sum up a wonderful, weekend-long experience like Summer Camp Stanford Medicine X, so I will focus on what stood out the most for me.*
Damn, These Cabins Are Nice
As always, @larrychu and his what-seems-like-a-small-army-of-a-team did a fantastic job of creating a unique conference experience…from the sea of smiling faces to the thoughtfulness put into everything ranging from the weight of the paper to the quality of the video production to the eyebrow-raising badges. I think it says a lot that student volunteers from last year’s Med X traveled back from medical schools like Yale and OHSU to be there this year.
Singing Songs & Roasting Marshmallows
Since its inception, Medicine X has always tried to give the patient a voice in the healthcare conversation. In past years, that voice often took the form of stories they shared. This year was a bit different as those patient contributions expanded even more. I saw patients helping to build research networks (C3N @ekeeleymore ), advocacy orgs (Emily’s Entourage @emilykg1), and apps (Goal Machine @HurtBlogger).
But I have to say, the stories themselves continue to have a substantial impact. Different stories speak to different people and a few this year really spoke to me. Joe Riffe (@DirteMedic) spoke about his journey from “broken biped to Prosthetic Medic”. Coincidentally, a story Joe (from Kentucky) told me about Pappy Van Winkle followed me all the way home, as that rare bourbon had cameos in both a Google-centric movie (The Intern) and on a soccer podcast (Men in Blazers) on my JetBlue flight. (This is also relevant because the absence of WiFi on JetBlue meant I had time to write this). Another story that stood out for me was that of Emily Bradley (@chroniccurve). Her guest appearance on Just Talking will completely open your eyes to what living with chronic pain and disability for a young woman on a college campus is like. Aside: if you haven’t checked out Chris Snider’s (@iam_spartacus) podcast, you should. He has done a great job having Med X lead-in and post-conference guests.
There were lots of ePatient stories that I found compelling, but the last I’ll mention touched me the most. As a father of a young daughter, I listened to Catherine Rose’s (@drcatherinerose) story about the struggle to keep her daughter Alexis alive and couldn’t imagine facing that type of adversity. As an engineer and degree collector, it was amazing how Catherine put her penchant for numbers to work to help her miracle baby. I can’t even begin to do her story and imagery justice. Make sure you check out the Med X video when released! Until then, this will give you a tiny idea about what Catherine has been involved with for Alexis. Update: Catherine posted her Med X slides and notes here. Check out how meticulous she is with this example.
To sum up, a Southern boy made me marvel at his tenacity, a college student made me marvel at her resilience, and a mother made me marvel at her courage.
Who Made the Best S’mores?
I like research. There. I said it. So I always look forward to the “Academic” part of the “academic conference for everyone.” And while I definitely was digging the #whatifhc panel episode of Scientist Island with @Berci @michaelseid11 @stephen_friend and @dvansickle, I also really liked the Plenary and Parallel Sessions that let individual researchers shine in cooking up their own science-y S’Mores.
Research presentations worth writing home about included those by ‘conventional’ researcher Sean Young (@SeanYoungPhD): who presented on the use of social media for HIV prevention – his article was published this month in @AnnalsofIM; Amy Birney: an industry-based research scientist at ORCAS who presented on the MoodHacker app for depression; and Sara Riggare (@SaraRiggare): a doctoral student/patient with Parkinson’s who presented on her efforts in engineering for self-tracking of chronic disease.
Best Moment of Camp (aka If You Only Watch One Med X Video)
There was an enormous amount of quality presenters and panels at Stanford Medicine X; however, if you missed the whole thing and only watch one panel (or were in a parallel session and missed it) I would strongly recommend the Organic Data panel featuring: Atul Butte (@atulbutte) & Gilles Frydman (@gfry). I felt they represented the conceptual/cultural Alpha and Omega of Stanford Medicine X. Atul Butte discussed the exciting possibilities of research with genomic medicine. I think him a bit prescient as well in reflecting on an older talk he gave in which he suggested than a high school student could perform high level research given what is available online today (I’m looking at you keynoter @jackandraka). The other thing Butte did was present in a way that was accessible to a very broad audience and with a pretty positive message. At the other end of the ePatient spectrum was Gilles. I knew a bit about ACOR and his work with participatory medicine and had even met him once at a conference in Philadelphia. However, I had never heard *him* tell his story. Wow. Patient advocacy, community building, bridging the gap from patient to researcher…he has created a truly admirable body of work.
Camp pranks and surprises
Was I surprised when I saw a pediatrician from the Midwest quote Pitbull in the #MedX stream? Yes, sort of.
Was I pleasantly surprised when @SeattleMamaDoc overheard and got my back after someone challenged me for “being too pale” to actually live in Florida? (Psst, it’s called sunscreen). Yes, it was nice.
Was I dismayed at the number of articles that were inaccessible related to conference topics. Unsurprised. But yes, a bit.
I had a couple of experiences at Med X that prompted me to think about trying to make it to Doctors 2.0 and You. At one point I was at a table with @Berci @health20Paris @gfry and @CiscoGiii (almost as the lone American) and it occurred to me that there might be good ideas elsewhere too. It made me think back to Mednet in Leipzig (anyone? anyone?) where I heard a presenter from a Scandinavian country bemoan the fact that only 92% of their hospitals had EMRs. That was 2007.
Future Is In Pretty Good Shape With These New Campers
I saw a lot of first-time attendees, ideas, and presentations at the 2013 edition of Stanford Medicine X. There were innovative scientists, emerging patient voices, and creative technologists. We have a lot of problems to overcome with healthcare. But I definitely left feeling that we have the pieces to do it.
*Confession: I’m totally stealing the #MedX Summer Camp theme and using it as a device here
Other Perspectives on Stanford Medicine X 2013 (Click on title for link)
From an ER Physician (@DrLeanaWen)
From a medical student (@TheBiopsy)
From a caregiver (@DrCatherineRose)
From a…great googly moogly, I may not bother to update my compilation anymore (@DrCatherineRose)
From ePatient and Feelalike founder (@AlderBrett)
From a patient with type 1 diabetes (@iam_spartacus) [Storified]
From same patient with type 1 diabetes who podcasts and wore Google Glass (@iam_spartacus)
From same (industrious) patient w/type 1 diabetes [& guest] (@iam_spartacus & @saraknic) [#JustTalking podcast]
From the official Stanford Medicine account (@SUMedcine)
From a kids doc in the Midwest (coincidentally…no, really!) (@DoctorNatasha)
From a Cystic Fibrosis advocate/mother of 4 (@ekeeleymoore) [Storified]
From a pharmacy student (@NicholasVu)
From a nurse/patient/caregiver (@She_Sugar)
From a physician futurist (@Berci)
From a med student/medical journalist (@TeawithMD)
From a “Professional Patient” (with loads of vid interviews) (@Hospital Patient)
From Hashtag Central (@symplur)
The next frontier in healthcare? The next step in patient-centered delivery of health services? Technology’s next overhyped bubble? There are grains of truth in all of these labels that have been given to mHealth. However, what is beyond debate is that there are opportunities with mHealth. In particular, I am optimistic about the opportunities with mHealth for pharmacists. To that end, I asked several colleagues to help outline the potential of this informatics arena. Those efforts were recently published as an article in the American Journal of Health-System Pharmacists (AJHP). My hopes are that this article serves to increase awareness of these opportunities and perhaps spurs some pharmacists to capitalize.
Source: Clauson KA, Elrod S, Fox BI, Hajar Z, Dzenowagis JH. Opportunities for pharmacists in mobile health. Am J Health Syst Pharm. 2013;70(15):1348-1352.
Kevin A. Clauson, Pharm.D., is Associate Professor; and Shara Elrod, Pharm.D., is Assistant Professor, College of Pharmacy, Nova Southeastern University, Fort Lauderdale, FL. Brent I. Fox, Pharm.D., Ph.D., is Associate Professor, Harrison School of Pharmacy, Auburn University, Auburn, AL. Zaher Hajar, Pharm.D., is Fellow in Consumer Health Informatics, College of Pharmacy, Nova Southeastern University. Joan H. Dzenowagis, Ph.D., is Senior Scientist e-Health World Health Organization, Geneva, Switzerland.
Mary Meeker from KPCB recently delivered her gallery of “2013 Internet Trends” at the All Things D conference (#D11). I was originally directed to this data marathon from the mobile perspective via Brian Dolan (@mobilehealth). However, Meeker’s presentation is much more than that. It is a sprawling look at the Internet of Things, Traditional Industries Being Re-Imagined, and Sharing Everything. Fortunately, her mammoth 117-slide deck (that was delivered quickly in just 20 minutes; video here) has been placed on @Slideshare.
It is a lot to process, but here are just a few points that jumped out at me from Meeker’s presentation:
- The average smartphone user reaches for his/her device 150 times a day (what does this hint at for wearables?)
- Percentage of residents who ‘share everything’ or ‘most everything’ online: USA (15%) compared to Saudi Arabia (60%)
- JD.com offers same day package delivery with real-time map tracking…often by bike…in China
- Amazon was the third largest provider of tablets in 2012 (behind Apple & Samsung); overall tablet growth has outpaced smartphone growth
- 77% of academic leaders at 2,800 colleges perceive online education as the same or superior versus face-to-face education
- Top “Learning Tools” from “learning professionals” worldwide included: 1. Twitter 2. YouTube 3. Google Docs…7. Skype 8. PowerPoint…12. Evernote 13. Slideshare 14. Prezi
- Mary Meeker is funny, who knew?
Again, there is a lot of information here and some require a deeper dive, but this is a great resource to answer some questions and stimulate more.
Since the demand for pharmacy residency spots far outstrips the supply – only about 60% of students match nationally – my colleagues Josh Caballero, PharmD, BCPP and Sandra Benavides, PharmD created a course to better prepare students at our College of Pharmacy to pursue a residency. Over the next couple of years, students completing that course went on to match 80% of the time. That success eventually turned into the recently published book, Get The Residency: ASHP’s Guide to Residency Interviews and Preparation edited by Drs. Caballero, Benavides, and I. The book was written in collaboration with faculty, clinicians, and residency program directors from across the country. I am pleased that it has been well received by students and reviewers alike and has entered its second printing. Currently, Dr. Caballero directs a neurocognitive fellowship and I serve as a director of a fellowship in consumer health informatics.
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.
One of my favorite developments within the Florida Society of Health-System Pharmacists (FSHP) has been membership’s growing interest in informatics. Of course, there are FSHP members who have been active in informatics for 20+ years, but the increased focus on it in the last 5 or so has been particularly encouraging.
To that end, I was asked to present this year at FSHP Annual on one of my favorite topics – patients’ use of mobile health (mHealth) apps to enhance their self-management. The expanded slide deck from my FSHP presentation is below.