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)
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.
As the profession of pharmacy continues to evolve in response to society’s health-related needs, one of the most pressing developments is the demand for more residency training opportunities. The demand currently far outstrips the supply of residency positions, and 2010 saw nearly 1 in 3 applicants fail to secure one through the Match. The onus on us as pharmacy educators is two-fold. Nationally, we need to scale up existing slots and help create new programs. Locally, we need to prepare our students as intensively as possible to help them compete for residencies that will help transform them into agents of change for the profession.
To that end, a couple of my colleagues developed an elective, Residency Interviewing Preparatory Seminar (RIPS), the details of which were recently published in the American Journal of Health-System Pharmacy. I was fortunate to be involved in this course aimed at developing our students’ core skills in the process including: improving their interviewing and presentation skills, professionalism, and developing their curriculum vitae (CV) and personal statement. As the course was targeted to P4s (i.e., completing the final, clinical phase of their education) who were at their rotation site all day, the class was held weekly for two hours in the evening and timed to be completed directly before the Midyear Clinical Meeting.
Completion of the RIPS course demonstrably improved the confidence of the enrolled students and 78% of RIPS students that cycle secured a residency. Nationally, the success rate is only around 62%, although these numbers cannot be directly compared. We have continued the course since publication and the most recent iteration saw a further increase in the percentage of RIPS students able to secure a residency position. Plans are to continue an iterative approach to course development.
One of the benefits of working at a large university is all of the different faculty you get a chance to work with. In this case, I collaborated with a group led by someone I have immense respect for – Dr. Sandra Benavides. She relayed that, “Medication safety and dosing information is often poorly delineated for paediatric patients as 75% of medications demonstrate insufficient labelling for these two purposes.”  So off-label or ‘unlicensed’ use of meds in peds is very common, with accompanying safety problems exacerbated by the more narrow therapeutic window in this population. Since use of clinical decision support tools is one strategy that has demonstrated the ability to help prevent med errors in peds  and the use of mobile devices in clinical practice has expanded substantially – we decided to systematically examine the quality of medicines information in a sample of commercially available tools. The article that came out of the study was recently published in Informatics in Primary Care.
Paediatric-specific tools evaluated included: British National Formulary for Children, Harriet Lane Handbook, and Paediatric Lexi-Drugs. Generalist tools included: A to Z Drug Facts, American Hospital Formulary Service Drug Information, Clinical Pharmacology OnHand, Epocrates Rx Pro, Lexi-Drugs, and Thomson Clinical Xpert. 108 questions (e.g., Can the sudden appearance of extrapyramidal symptoms in an 11-month-old infant be attributed to administration of metoclopramide for injection?) were distributed evenly across infant, children and adolescent subgroups. Answers for the evaluative questions were sourced from established sources and (due to the high rate of off-label prescribing for which no conventional source exists) clinical guidelines.
The verdict? “The best performer [Pediatric Lexi-Drug] provided 75.9% of the answers…Databases generally performed less effectively in providing answers sourced from clinical guidelines compared with more conservative sources such as package inserts”. Obviously the article itself goes into much more detail regarding scope and completeness of the tools and their performance based on several criteria. Hopefully the article adds some useful guidance and identifies both strengths and shortcomings with which these increasingly important tools and their nextgens can be improved upon.
1. Benjamin DK, Smith PB, Murphy MD et al. Peerreviewed publication of clinical trials completed for pediatric exclusivity. Journal of the American Medical Association 2006;296:1266–73.
2. Fortescue EB, Kaushal R, Landrigan CP et al. Prioritizing strategies for preventing medication errors and adverse drug events in pediatric inpatients. Pediatrics 2003;111:722–9.
3. Benavides S, Polen HH, Goncz CE, Clauson KA. A systematic evaluation of paediatric medicines information content in clinical decision support tools on smartphones and mobile devices. Informatics in Primary Care 2011;19(1):39-46.
One of my pet interests is health literacy and its far-reaching impact on quality and access to healthcare. The issues surrounding it can almost be insidious in nature. Despite this, health literacy is typically only given superficial coverage in traditional training programs.
Here in South Florida we have an especially diverse patient population with a higher than average percentage of those with limited English proficiency (LEP). It’s pretty intuitive, but LEP patients are (unfortunately) more likely to encounter barriers to health care and are associated with poorer outcomes than non-LEP patients.
In part to address this, there was actually an Executive Order mandating “meaningful access” be given to LEP persons for Federally-funded activities (what, you didn’t think ‘meaningful use/access’ was limited to EHRs and the like?). Consequently, hospitals, clinics, etc. began incorporating translators and other language access services (LAS) as SOP (at least on paper) due to their receipt of Federal funding/payments. However, a funny thing happened on the way to implementation in community pharmacies – much as those pharmacies and the healthcare professionals that staff them are treated differently than similar entities/professionals in our system of health care…this mandate has been treated more as a voluntary compliance issue. What, if any, impact has this had on reimbursement or outcomes? The jury is still out. However, as a first step to methodically examine this issue, we conducted a national survey of availability and use of LAS in community pharmacies; the initial results of which have recently been published in the Journal of the American Pharmacists Association (JAPhA).
Pharmacist responses to the survey ranged from descriptions of widely advertised and seamlessly integrated interpretation (verbal) and translation (written) LAS services to the (rarely observed) attitude of ‘if they’re in our country they should speak English’. Overall, we identified issues regarding awareness (e.g., about half of pharmacies with LAS capacities did not report making them known to patients), use of LAS (e.g., about 40% said they “never” used interpretation/translation tools), and workflow/time (e.g., a quarter of respondents said they simply lacked time to use LAS). Alternately, there were encouraging signs as pharmacies that did apprise patients of LAS availability used a variety of methods including in-store direct notification, signage, flyers, and targeted mailings. Additionally, more LAS products are becoming available such as Elsevier’s MEDcounselor Languages module, which advertises SIG translation and patient education materials in 14 languages. Another gem that area pharmacists have started using (albeit moreso in AmCare clinic settings) is the free MediBabble iPhone app. My understanding is that a future update will (ahem) include pharmacists in the introductions section.
Unfortunately, our article “Community pharmacists’ use of language-access services in the United States” is behind a subscription wall, but I would be happy to answer any questions that I can.
Disclosure: A couple years ago we received a grant from one of the quadrillion companies Elsevier operates for an unrelated research study. Inclusion of their product in this post is mostly due to timing (I just received an email about it), and should probably not be construed as a conflict of interest except for the most Mel Gibsonian of conspiracy theorists. Separately, this JAPhA LAS study was funded by a NSU President’s Grant. Going forward we are planning to study the LAS disconnect further, as well as possible solutions that may include tools such as automated LAS kiosks in pharmacies and online functionality as well as LAS availability notification via social media; funding source(s) TBD.
Source: Feichtl MM, Clauson KA, Alkhateeb FM, Jamass DS, Polen HH. Community pharmacists’ use of language-access services in the United States. J Am Pharm Assoc. 2011;51(3):368-72.