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.
Helping Your Patients Make Sense of the mHealth Marketplace
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.
@kevinclauson
Why Diabetes?
Sometimes people ask why so many of our projects center around or involve interventions for diabetes…this (unfortunately) summarizes the answer quite nicely.
@kevinclauson
Infographic by Lloyds Pharmacy
h/t @drwalker_rph
Evaluation of paediatric medicines information content on smartphones & mobile devices
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.” [1] 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 [2] 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.[3]
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.
@kevinclauson
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.
Launching a Center for Consumer Health Informatics Research
We are very excited that the Nova Southeastern University College of Pharmacy has officially launched our Center for Consumer Health Informatics Research (CCHIR)! Like all undertakings of this magnitude, it has been in the works for some time and has benefited from tremendous support from many corners – in particular the Chair of the Department of Pharmacy Practice and the Dean of the College of Pharmacy. Below is a presentation outlining some basics about the Center. I look forward to working with its faculty and collaborators and steering the CCHIR toward many great developments in the future.
@kevinclauson
UPDATE: The dedicated site is up at www.CCHIR.com
Pharmacy: Is there an app for you
The 45th Annual Meeting of the Florida Society of Health-System Pharmacists (FSHP) was held in Orlando during the weekend. Since it is a state organization conference, it is much smaller than gatherings like the ASHP Midyear Clinical Meeting. This allowed for a streamlined set of programming tracks and a more relaxed atmosphere. There were also some interesting individual sessions (and necessities) on medication errors, pain management, etc. I particularly liked the presentation on “Cyberhealth”, which focused on issues with Internet Pharmacy. Additionally, I had the opportunity to present “Pharmacy: Is there an app for you” at the meeting.
@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
Webicina Mobile – iPhone now, Android Later
Yesterday, during a lunch chock full o’ watching a live broadcast of a knee surgery from Swedish (courtesy @danamlewis) and checking out a group of smart, passionate folks talk about Women & HIV at the White House (including @SusannahFox), I indulged in a download of the new Webicina app for the iPhone.
For those of you unfamiliar with Webicina, it is one of the best examples of crowdsourced curation of health information I have seen. At the most basic level, it is a list of resources, by medical specialty (for healthcare professionals) and health conditions (for patients). Also, if you click on ‘About Us’ (top right in screenshot) from the main menu, it will provide a link to its PeRSSonalized Medicine feature, which has RSS-like functionality…except that a world of contributors has already done the work to pre-select menu items for you. And it’s available in 17 languages. Oh, and it’s free. Webicina has been available online for a couple years, but now it’s available as an app on iTunes, and per its creator/curator Dr. @Berci Mesko, it will soon be available for Android.
I think the best value of Webicina may be that it is a central place to direct healthcare professionals who are looking to get their feet wet with social media/Web 2.0 or alternately, it is a good initial place to direct patients who are a bit overwhelmed from trying to dive into the pool of health information online. The next best thing about Webicina? If you think there is a great resource missing from the list, just click on the link to Webicina.com in the app and type it into the ‘suggest a site’ box for possible inclusion!
@kevinclauson
Scroll down for additional screenshots
I poked around a bit on it earlier today.
Here are the menus for Medical Professionals and
Patients
(And below is an enlarged iPhone screenshot of some of the resource types within a section)
Intersection of social media and research
There are a number of initiatives, sites, and platforms trying to capitalize on the power of social media and social networking to enhance research efforts. A few of them are ResearchGate, Health InnoVation Exchange (HIVE), and VIVO. Each offers something a bit different; for a full list of ‘biomedical communities’ check out this excellent resource by @Berci Mesko.
Aside from those ‘communities’, can social media enhance research? For me, the answer is a resounding yes. I have both observed and directly benefitted via plenty of resources. Here is a random sample: a source of support for grad students that hosts data sets, actual datasets made freely available for conducting research, a how-to for using Facebook to recruit survey participants, and a prelim study on use of Facebook for health education.
However, for me, the clearest benefit has been from social networking tools; chief among those is Twitter. It has helped my research by: 1) connecting me to people with complementary expertise for collaborating on research projects, 2) exposing me to different types of expertise and ways to approach problem solving for research, and 3) creating a filtered source of relevant information about research.
It’s that last item that I want to focus on. A little over six months ago, I saw a tweet from @mindofandre (who has the excellent Pulse+Signal) announcing a RFP for the Mobilizing for Health grant by the McKesson Foundation. For some reason, I did not see that RFP on my Community of Science alerts, or any of the other resources I use to stay informed on grant opportunities. Thankfully, I did see it on Twitter. It looked like a great match for a study our mHealth group wanted to conduct. Fast-forward 6 months and past lots of heavy lifting by my colleagues, and we are very happy we’ll be able to conduct that study as ours was one of the proposals funded! Now that I think of it, Andre was the person who put us into touch with several other mHealth researchers about 10 months prior to that as well – quite the Gladwellian Connector, that one. In any event, this is just one example of the intersection of social media and research. The tools are there, you just have to use them.
Oh, and in the best pay-it-forward tradition, here are two outstanding mHealth research-related opportunities:
- NIH/OBSSR mHealth Summer Institute where early career investigators will get an intensive weeklong experience to learn about mHealth research. (Deadline extended until March 10)
- The new cycle for the McKesson Foundation Mobilizing for Health grant has begun and Letters of Intent are due on April 1, 2011.
I’d love to hear any examples of how social media has impacted your research – by creating opportunities, informing you, using it as a tool to collect data, connecting you with potential collaborators, etc.
@kevinclauson
