Reflections On Day 1:
Tonight marked the end of the first day of the snazziest conference I have ever been to – Stanford’s Medicine X 2012. Held at Stanford School of Medicine’s Li Ka Shing Center, Medicine X is all about emerging technologies and their influence on medicine. Today’s focus centered on self-tracking and the quantified self. That is, patients who use different technologies to track their health activities over time to help make better health decisions. Full disclosure: I was awarded a student access scholarship by the very generous Stanford Medicine X leadership that made my attendance possible. I am very much grateful for their support.
There were a number of themes that emerged from speakers’ presentations and various panel discussions. Though self-tracking using high tech tools is in its relative infancy, there is already a panoply of issues that need to be dealt with, making the field ripe for innovators and entrepreneurs. You can read about those from better authors with better experiences.
A few themes that emerged were:
1) The traditional medical world’s unfamiliarity with self-tracking patients, how to handle their data, and engage them effectively.
- Many of the self-tracking patients expressed their respective physicians’ apathetic receptions to self-tracking data.
- The problem may reside in how physicians are trained during medical school. Their mindset may be shaped to be more pedagogical, rather than collaborative, resulting in “one-way” relationships with patients.
- If properly implemented, self-tracking data can provide the history for the patient, so clinical encounters can focus on what they were originally intended for – to treat, not to recite.
2) Opportunities for innovative self-tracking experimentation.
- Though great examples of useful self-tracking tools exist, including the iBGStar glucose meter and Beam toothbrush, there is still much work to be done.
- As the line between wellness products and medical products blur, the importance of maintaining a “consumer-facing” user experience is key.
- As self-tracking becomes more popular, the importance of consumers’ education in scientifically examining their data stream(s) surfaces; we don’t want patients acting on misdiagnoses based on ill-informed conclusions.
3) The relevancy of self-tracking data to the individual as well as society.
- The data streams generated by self-tracking patients will be unwieldy in their number, dimensionality, and continuity.
- Problems arise in effectively examining gigantic data sets from populations of self-trackers for widely-implementable solutions, while maintaining context and privacy for the individual patient.
- Dr. Bryan Vartabedian tweeted, and Ernesto Ramirez later reiterated, that the issue isn’t so much as big data as it is the relevancy of data; how do we make all these data sets actionable for the individual?
Self-tracking seems like a burgeoning field. It will be interesting to see how it progresses in the coming years. Personally, I have an interest in seeing how this self-tracking data can be applied to developing countries. India, for example, has the second largest cell phone user base in the world. How can self-tracking, or mobile health technologies, empower them to tackle India’s double burden of disease? During these presentations we heard a lot about how social networks sometimes played encouraging roles in helping self-tracking patients improve their outcomes. Rural India is entirely comprised of smaller social networks (i.e. villages, small towns, etc.). Could the same encouragement from social networks apply to a developing country as well?
I’m pretty excited to see what Day 2 of Stanford Medicine X holds. Hopefully I’ll dispatch a post tomorrow as well. Good night.
Reflections On Day 2:
Now that I know half the Medicine X community may be reading this, the pressure is on! Just as an aside, before I actually begin reflecting on what was yet another packed day at Stanford Medicine X, I want to say how honored and humbled I am to be featured by Dr. Larry Chu at the day’s opening remarks. I am glad my writing found a receptive audience. An hour after Dr. Chu mentioned my name, I became rather curious as to the effects it had on my blog’s internet traffic. I couldn’t help but chuckle at the following result:
Anyway, back to the real reason why you’re here.
Just like yesterday, today’s conference was filled with energy, ideas, and enthusiasm. Yesterday’s theme was obvious – self tracking. If I had to use a phrase to describe today’s larger focus, however, it would be “patient-collaborative”.
You may have been expecting the “patient-centered” moniker that gets tossed around frequently. If the ePatients’ speeches taught me anything, health care needs to transform towards more than just “centering” on the patient, which still leaves the possibility of a power dichotomy. Health care needs to evolve towards a partnership with patients that pushes their ideas and experiences to parity with traditional medical philosophy. We’re not trying to supplant physicians, but rather supply them with actionable perspectives that have their inherent value seriously regarded.
We saw this “patient-collaborative” theme in multiple talks, starting with Michael Graves. His experience as a patient informed his aesthetic philosophy, which helped Stryker redesign traditional medical furniture and spaces with thoughtful patient-centered enhancements. Anne Wojciki, the CEO of 23andMe, envisioned a future where patients could own their genomes and make better clinical decisions with their physicians. Dr. Roni Zeiger spoke about enabling external communications that allow patients to share life-saving treatments with their physicians, who are often unaware thanks to the “lethal lag time”. Kim Petty of Experia Health recounted how redesigning the hospital started not with a focus on efficiency, but with a patient-informed lens that humanized things as simple as semantics on informed consent sheets to more complex cultural aspects like provider grieving and hospital ethos.
Along with the moving talks all the ePatients gave, a particularly powerful speech wasRegina Holliday’s experience with her husband’s care and the tenets behind her art. Her impassioned plea begged us to couple the big data we talked so much about yesterday with an actual patient narrative; to understand that behind all those numbers, figures, charts, and graphs there lies a person who is deeply affected by how we read, interpret, and act on those findings.
One of her paintings illustrated her kneeling, pleading to her husband’s physician for access to his medical records, a tableau very much representative of her desperation at the time. During her speech, she alluded to that fact that she would have preferred to have stood there with the physician, a physical manifestation of mutual respect. What I thought was worth noting (amongst the plethora of things worth noting) was the fact that she did not want to depict herself as somehow towering over the physician. No, it was mutual respect and the rights that entails which she longed for. Indeed, patient collaboration.
Brian Loew, CEO of Inspire, had a quote that I thought was particularly apt for all the innovative thinking happening at this conference – “Many of of things we are doing here today require audacity.” Medicine can often be slow to change thanks to any number of factors. But, as Dennis Boyle of IDEO said, we must bravely foster a “bias to action”. Nothing is going to change if we just sit and pontificate.
I will issue, however, a few notes of caution:
1) We assume that our patients are technologically well-equipped. Talking to a few conference attendees (Danielle Jones, Brittany Chan, and Dr. Raymond Cattaneo in particular), it becomes apparent that mobile health technologies are not as widespread as we wish them to be. Underserved areas, rural counties, and developing nations may not have access to the basic infrastructures and suppliers that we are accustomed to. Thus, as we brainstorm innovations for a select group of well-connected patients, it’s important that we don’t forget the patients we may be leaving behind. How can we adapt our technologies to help those less fortunate? At least until their socioeconomic circumstances equalize with those of our “mHealth” patients.
2) I am completely for empowering patients with their own data. I do, however, have my reservations in how we share that data with patients. Specifically, I wonder how we engage patients of different educational and/or interest levels in their health data. Quantified Self enthusiasts may want to delve into granular details of daily tracking, but that doesn’t mean we should flood more apathetic patients with the same data. I propose that patient health portals should include a patient-controlled “slider” that modulates the spectrum of data they receive. That way, a patient can control whether or not they want to see a summary of test results or the particular concentrations of individual components.
3) Lastly, I ask that our ePatients, and all patients in general, please bear with us. Medicine is literally going through puberty right now, as it learns that there are more mature emotions in addition to basic scientific instincts. Many of the physicians who attend Medicine X already “get it”, but the fact remains that Medicine X’s attendance is still a fraction of what conferences like the American Thoracic Society pull in. I fully believe Medicine X, and conferences like it, will start to attain those kinds of numbers (especially with the nightclub and TED Talk vibe) as more professionals realize the power of this movement. Until then, though, your patience, dedication, and advocacy will go a long way in helping medicine get through it for the better. As a premed undergraduate, I hope to carry out Medicine X’s vision of medical practice once I (hopefully) become a doctor. With your help, it will become a more possible reality.
Stay tuned for my reflections on the last day of Medicine X tomorrow! Your comments, suggestions, and concerns are very much appreciated!
Day 3 Closing Thoughts:
It’s 3 AM in the morning after the end of Stanford Medicine X’s last day.
It’s been three amazing days of exposure to some of the most forward-thinking concepts that medicine currently proffers. Rightfully, it takes a bit of time to realize the profundity of everything we saw. Even more interesting, however, is the profundity of everything we didn’t see. What do I mean? Read on.
Day Three of Medicine X showcased the pioneers of medicine’s new frontiers – people who are actively bringing changes to medicine – in large part a continuance of themes we saw yesterday.
Dana Lewis demonstrated the value of patient perspectives on medical communication and research.
We were brought up to speed on Europe, Asia, and Australia’s astounding progress on health technologies with apps like 3G Doctor and the PCEHR. Progress that, at one point, made me feel that America has such a long way to go.
Hugo Campos, an ePatient with an implantable cardioverter-defibrillator, convinced us that the data we generate imbues a responsibility to the patient communities we identify with, and, as such, becomes “our” data. The power of open access data was bolstered byAtul Butte‘s revealing meta-analysis of diabetes studies, Peter Binfield‘s commitment to changing the ancient scientific journal architecture, and Sean Bonner‘s telling story of enabling grassroots-level change through public data generated by inexpensive tools. Open access, it seems, is the way of the future.
Once again, we were reminded of the human emotion that is so strongly affected by clinical decisions by Britt Johnson. Health professionals must understand the power of their words, and, as always, to never underestimate the power of their patients.
Towards the end of the day, I believe we approached one of the most important messages we have heard during the conference. The curators of online medical content, undoubtedly the philosophical leaders of our push and, often times, the first line of absorption against the backlash that brings, Dr. Wendy Sue Swanson and Dr. Bryan Vartabedian talked of their online experiences. Storify was also highlighted as a powerful curation tool.
Dr. Wendy Sue Swanson, who I had the pleasure of briefly meeting, played a video clip of a physician peer openly mocking her efforts in front of a filled auditorium of medical professionals. Even more stinging was the audience’s laughs and cheers. It was all a joke.
As I drove away from one last night with Medicine X and its amazing participants, I slowly started to realize why what was not seen at this conference was so profound. Medicine X, at its highest attendance capacity, is still a fraction of what other conferences pull in. I didn’t see as many attendees, which reinforces the fact that Medicine X is still incubatory.
As the “reality distortion bubble” began to disintegrate, it dawned on me that many of us will be driving, flying, and travelling back to those same kinds of auditoriums Dr. Swanson shared. I began to feel slightly discouraged.
Then, as if by divine intervention, a motivating song began playing on the radio. The song is titled “Some Nights” by Fun. Its pertinent lyrics were as follows:
This is it, boys, this is war – what are we waiting for?
Why don’t we break the rules already?
I was never one to believe the hype – save that for the black and white
I try twice as hard and I’m half as liked, but here they come again to jack my style …What do I stand for? What do I stand for?
Critique the lyrical quality all you want, but the message still remains. We are fighting a battle against staunchly entrenched dogmas. This takes perseverance, but more importantly, it takes reflection. As we mature from incubatory to prominence, we must consistently evaluate ourselves by asking “What do we stand for?”. Though the answer may evolve over the years, its fundamental definition of progress will remain. As long as we stay true to that ideal, dogmatic defenses will slowly erode.
Lest we forget, we do not stand as singular bastions. Heroes are glorified, but they do not win battles alone. I believe that the most important thing we can take away from Medicine X is not the individual apps, experiences, concepts, or demos, but the partnerships we have made with fellow attendees. If our ePatients taught us anything, it is that medicine’s most powerful resource is the human resource.
In that spirit, I urge all Medicine X attendees to keep in touch with one another through whatever means are available to you. When you feel a task is too burdensome, a problem too complex, or an idea is too unsubstantiated, reach out to us. We may be a small group, but we are incredibly bright, aggressively collaborative, and genuinely supportive. Remember the people you have met because you will most likely see them giving speeches and leading progress elsewhere. With this network by our side, facing that adverse auditorium will be that much easier and much more effective.
I hope you share this message with all your Medicine X family. Tweet it, Facebook it, email it, post it. Spread the message. Spread the motivation. Spread the inspiration.
Be a force to change the medical world and know that we are always watching your back.
I realize that this may be your final visit to my blog after Dr. Larry Chu highlighted it. I want to humbly thank you for your readership, however temporary it may have been. I am honored to have been unofficially chosen to summarize, and provide commentary on, a fantastic conference at a premiere school. Please keep in touch and continue making the world a better place. I’ll certainly be writing about it.