Tag Archive | Stanford

Stanford Med X 2013: Postcards from Summer Camp

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.*

SummerCampMedX2013

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).

ePatientPanelSniderbradleyRiffe_MedX2013

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 AlexisUpdate: 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.

ePatients wearing #S'MoresWalkingGallery jackets in support of @ReginaHolliday's inclusion on Scientist Island

ePatients wearing #S’MoresWalkingGallery jackets in support of @ReginaHolliday’s inclusion in #whatifhc panel on Scientist Island

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.

I’ll come back and update this post with the link to their panel video when it goes up – it is that good. UPDATE: Video has been posted of @gfry video and of @atulbutte video from the session.

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.

EuroDisney
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

JackAndrakaKeynoteMedX2013

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.

@kevinclauson

*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 the Prosthetic Medic (@DirteMedic) Part 1
From the Prosthetic Medic (@DirteMedic) Part 2

From chronic pain/disability patient (@chroniccurve) Part 1
From chronic pain/disability patient (@chroniccurve) Part 2

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 patient who experienced an “unnecessary nightmare” (@Riander)

From a nurse/patient/caregiver (@She_Sugar)

From a physician futurist (@Berci)

From a med student/medical journalist (@TeawithMD)

From BestEndings founder who sports a ready smile and a ‘Death Kills’ t-shirt (@KathyKastner)

From a “Professional Patient” (with loads of vid interviews) (@Hospital Patient)

From Hashtag Central (@symplur)

From an ePatient Advisory Board member and fishing line magician (@NickDawson)

From an ePatient who also provides the E of Entourage (@emilykg1)

Stanford Medicine X: To inform and inspire

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!

@kevinclauson

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.

Texting for Diabetes @ Medicine 2.0’11 Stanford

For Medicine 2.0 (#med2) at Stanford this month, I am excited to be delivering a Research in Progress presentation of our study,  “Impact of Texting and Predictive Potential of Health Literacy on Medication Adherence in Type 2 Diabetes Mellitus”. The study, supported by the McKesson Foundation Mobilizing for Health grant program, aims to help a diverse and largely uninsured and underinsured population in South Florida improve adherence to the medications they take for type 2 diabetes mellitus. Our study intervention is designed as a simple series of text messages through treatment targeting one of the primary hurdles to optimal medication adherence – reminders. I will also be sharing our plan for integrating health literacy assessments and disease state knowledge into the clinic EHR as a means to provide more patient-centric counseling and support. Our hope is that we produce an effective intervention to improve health which is also low-cost and thus ultimately scalable. There are a lot of scary numbers being bandied about for diabetes such as its $174 billion annual cost and forecasts that as many as 1 in 3 Americans could develop diabetes by 2050; it would be massive if this contribution could assist in stemming the tide.

Beyond being surrounded by a great study team, I have also been fortunate that providers at our primary care clinic partners have become very enthused about the study. We actually amended our original protocol to account for the fact that physicians at other clinics within the Memorial Healthcare System approached us and volunteered to help recruit participants.

Over the years, Mednet and its offspring, the Medicine 2.0 Congress have been among the most ambitious, surprising, and practically beneficial conferences I’ve attended.  Every year I see new attendees from seemingly disparate areas and sectors that come and then find commonalities that produce stimulating discussions, research collaborations, business ventures, and even friendships. This year will continue that tradition with the pre-conference lineup at the Stanford Summit on September 16, 2011 and the two-day Medicine 2.0 conference proper that follows on September 17th and 18th.  I will be there to share our research to date and eager to participate in the other sessions. I hope to see you there too!

@kevinclauson

Mobile Health 2011: A Look Back at What Really Worked

Stanford Guest House

Mobile Health 2011: What Really Works at Stanford University (#mh11) is over, so it’s time for a quick look back at the conference.  To borrow (steal?) from conference organizer, Stanford Persuasion Technology Lab director, and quick-change artist @BJFogg – I am going to take a retrospective look at my experiences there through the device of ‘home runs’.  For full speaker slide decks, you can click here.

Conference Atmosphere Home Run
I have been to a lot of conferences…pharmacy conferences, medical conferences, informatics conferences, and social media conferences.  However, I have never been to a conference that seemed more along the lines of an ‘event that happens to be interspersed with speakers’.  This is not an indictment of the quantity or quality of the speakers; somehow there were >50 of them smoothly shoehorned into two days.  The comment is more about the carnival-like atmosphere surrounding the conference that made it fun and exciting, and contributed to a very collegial vibe.  One of the best aspects of Mobile Health was the extended breaks.  They were just plentiful enough and twice as long as an average conference.  If you think about the old chestnut ‘the best value at a conference is the hallway conversations’…voila! Those breaks doubled the value of the conference.  Also helpful was Fogg’s “giving permission” to all attendees to go up to anyone there and say hello, reinforced by the speakers largely making themselves available after panels concluded.  I’m still undecided about a few things (e.g., the birds and the bees); however, balancing all the West Coast wackiness was the fact that the conference was timed and chimed down to the minute.  Seriously.

Lodging Home Run
It’s almost like this place is a secret or something.  I stayed at the Stanford Guest House for their conference rate of $109.  You can barely stay at a Roof Rouge near a major city for that.  The rooms and hotel were basic and a little Spartan, but the beds were comfortable, the place was immaculately maintained, and the staff was gracious and knowledgeable.  The deal-maker was that the Stanford Shuttle (Marguerite) had pick-ups ~ every 20 minutes to take you all over the campus.  There was also a Guest House shuttle that could be reserved (e.g., to take you to the Alumni Center‘s conference venue).  The only drawback was that there were no dining options in-house or within easy walking distance.  Definitely will stay here again next time I’m at Stanford.

Almost Made Me Apply for a Job in Public Health Home Run
Sharon Bogan.  You just have to love somebody with that kind of spirit, fighting the good fight, excerpting Monsters, Inc., innovating in resource-limited settings, and inviting litigation (for others).  Everyone I’ve met from King County Public Health going back to the mhealth Summit has been a gem.

Goosebump Home Run [tie]
Green Goose and Proteus ingestible event markers.  Check them out.  Seriously.  They *literally* gave me goose bumps in thinking of potential applications of their technologies during their presentations.
Honorable mention: Google Cow presented by Google’s Chief Health Strategist (@rzeiger).  Technically he was focusing on Google Body, but since I had already seen Body I was pretty happy to see the bovine version.

Reunion Home Run
It was great to see @chiah @EndoGoddess @JenSMcCabe  KarenCoppock  @LarryChu  @SFCarrie  @SusannahFox and loads of others again!

New Peeps Home Run [misc]
If you are worried about our future, know that we are in good hands with people like @hcolelewis coming on the scene
Most likely to isosceles with regarding mHealth, PAHO, & Uruguay @JuanMZorrilla
Most likely to invite for Skype in guest lecture in my Consumer Health Informatics course @QpidMe
Most likely to explore the mHealth studies based out of our campus in Puerto Rico with @MarcosPolanco
Most surprised to find in my back yard Vic Shroff
Note: any conversations that included words like NDA, lawyer, or launch are not listed here for obvious reasons.

Failed to Connect at All Strikeout
I would have liked to have spoken with @enochchoi

Conversationus Interruptus Strikeout
The Keck and and PHI guys

Best Laid Plans Strikeout
Climate control and the janky A/C resulted in groups of attendees going to the outer hall and watching panels on a screen and/or going outside to cool off.
(Dis)honorable mention: minimal power outlets/juice available was surprising.  This problem was offset somewhat by the length of the breaks which allowed for both networking and recharging.

Least Favorite Panel
The Partnerships panel was my least favorite.  It definitely had eye-opening moments for some attendees and there were interesting discussions and placements (e.g., possibly the least and most idealistic two people at the entire conference were seated next to each other).  However, most of the discussions were pretty familiar to me from having gone through many of the processes described.  So my bias/preference would have been to have instead heard more specifics about MedPedia from James, Medic Mobile or Social from Josh, etc.

Overall Favorite Panel
Very tough decision as there were several really outstanding ones.  I considered a tie here but was able to pull the trigger and name “Methods and Measures for Research and Evaluation” as my favorite overall panel.  The moderator and panelists all had great content to share and illuminated a lot of the challenges in conducting research in this space.  Plus the Open mHealth initiative is so encouraging!  I think this panel is a ‘must view’ for everyone as it can help in introducing a common language that could lead to better coordination and scaling of efforts as well as providing guidance for individuals.  Overall, the quality and detail of this panel was exemplary.  I ended up choosing it in part based on the criteria of ‘if I could only have the full video of one panel’ because of its high utility for me and in sharing with multiple audiences.  Many of the slide decks from this panel are here.

Final Verdict
I am definitely happy I attended both the pre-conference workshop by @BjFogg (although it mostly served to whet my appetite for the full Boot Camp) as well as the conference proper.  I have been to some good conferences that were one-offs, but will absolutely figure out a way to make it back to Mobile Health next year.  My two most substantial takeaways were that the construct of this conference was singular in nature and that it was probably easier to connect with potential collaborators here than at any other conference I’ve attended.

@kevinclauson

Update: other perspectives on the conference have previously been posted here by @thulcandrian of AIDS.gov and a take on mHealth by @geoffclapp here.

Update 2. Here is a new conference highlights post by Craig Lefebvre (who I wish I had realized was @chiefmaven when I met him there)

Update 3: ‘Text in the City’ founder Katie Malbon has written the most ambitious mh#11 wrap-up to date

Update 4: If @TextInTheCityNY had the most ambitious/complete post, @geoffclapp has added the most thoughtful and thought-provoking review to date

Update 5: From the ‘people I wish I had a chat with’ file at #mh11, @AndrewPWilson has now provided his main takeaways from Stanford

Update 6: Patient-centric thought bubbles and more from e-Patients.net rep @msaxolotl at #mh11

Update 7: Jeff Kellem (@slantedhall) provided a tech-focused list of quick hits from the conference

Update 8: David Doherty (@3GDoctor) has added the most contrarian view of the conference to the conversation here

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