Issue link: http://read.uberflip.com/i/5219
2 3 4 1 SelF-TRacKIng WIll change The FUTURe oF healTh The Quantified Self and CureTogether are just the beginning. Here are some scenarios that point to a fundamental shift in healthcare coming in the near future. Self-Organized Clinical Trials Patients have started coming together to define their own case-control studies. At PatientslikeMe, patients with AlS either took lithium or didn't take lithium, and they tracked their progress. They didn't find that lithium helped slow the disease progression, but they did run an AlS trial with the largest population in the fastest time and with the lowest cost ever. Streaming, ubiquitous Biosensors Think constantly uploading data about your body to an online repository is far off in the future? Not so. For a one-time fee of $99, you can now have FitBit, the accelerometer with the beautiful clip-on form factor and wireless uploading of exercise and sleep data. It's passive motion tracking in your pocket. Analytics for Your Health A number of emerging companies are trying to do for health what Google Analytics has done for website management and what Mint has done for finances. DailyBurn is one example doing this for fitness and nutrition, with a $0.99 iPhone app that lets you take pictures of the barcodes on foods you eat to help you more smoothly track your caloric intake. A big challenge here is the lack of interoperability and standards adoption. EMRs, PHRs, and self-reported data just don't talk to each other very well yet, but medical informatics groups like the Regenstrief Institute are working on it. What Treatment Will Work For Me? The true promise of all this self-tracking is, in the end, personalized medicine. With enough data about your symptoms, biomarkers, environment, genes, response to previous treatments, and aggregate population data for comparison, it should be possible for a series of algorithms to determine which treatment is statistically most likely to work for you, with the greatest efficacy and least side effects. This is an exciting future to which I am dedicating all my waking effort. So now that you've heard Gordon Bell's story, and mine, and the voices of Quantified Selfers across the country, the choice is yours: will you document your life? 58 winter 2009 So whether it's for art, memory, health, or data for data's sake, people are tracking themselves and sharing their results. We do it because we love data or because we have specific things we want to optimize about ourselves. As Kevin Kelly wrote, "unless something can be measured, it cannot be improved." When Gordon Bell is asked what he has learned about himself through the MylifeBits project, his reply is unexpectedly qualitative: "That's been a really hard question to answer... I guess it's the rich set of connections and people that I've been involved with." Bell's comment reflects the challenges that come up over and over again at Quantified Self discussions — questions that tend to revolve around two topics: motivation and meaning. How do we stay motivated (and motivate others) to track ourselves, and how do we make sense and learn actionable lessons from all of this data? The search for solutions to these challenges offers ample opportunities for innovation. Imagine self-tracking games that reward people for recording their health with badges of recognition; passive monitoring devices that remove the need to actively track yourself; social pressure in the form of online group challenges; prizes awarded to algorithms that turn messy data into beautiful insight. cUReTogeTheR One step on this path of innovation is self-tracking applied to health. An example of this is CureTogether, a patient data-sharing site I co-founded with Daniel Reda where people come to self-report symptoms, treatments, and triggers for over 300 conditions. People are tracking their depression, cholesterol, migraines, and countless other measures. using migraine as an example, patients visiting CureTogether can see community statistics and learn that the top reported symptoms are "Nagging pain in one side of the head" and "nausea;" the top reported treatments are "sleep" and "ibuprofen;" the top reported triggers are "stress" and "not enough sleep" and the top related conditions are anxiety and depression. Instead of narrative websites that provide emotional support in the form of shared disease stories, the quantitative data at CureTogether enables decision support and hypothesis generation. People are getting ideas for new treatments that they ask their doctors about. They are seeing how common or rare their symptoms are, and learning what triggers might be affecting them. While each individual's data is completely private, the aggregate data is open for researchers around the world to analyze and use to make discoveries for the greater good. Some interesting correlations are already starting to emerge, like a potential link between migraine and fibromyalgia. Alexandra Carmichael is co-founder of CureTogether, blogger at The Quantified Self, advisor to Singularity University, and mentor to several startups. Find her on Twitter @accarmichael. Gordon Bell Homepage http://research.microsoft.com/en-us/um/people/gbell/ MylifeBits project http://research.microsoft.com/en-us/projects/mylifebits/ Jim Gimmell http://research.microsoft.com/en-us/people/jgemmell/ Franklin's 13 virtues http://www.sfheart.com/FranklinsVirtues.html Homebrew Computer Club http://en.wikipedia.org/wiki/homebrew_computer_club The Quantified Self http://www.quantifiedself.com/ Tweetwhatyoueat http://www.tweetwhatyoueat.com/ Alex Rossi's Tweetwhatyoueat video http://www.kk.org/quantifiedself/2008/11/alex-rossie-shows-tweet-what-you-eat.php Ryan Grant Talk http://www.kk.org/quantifiedself/2008/11/tivo-for-life.php Attila Csordas http://www.kk.org/quantifiedself/2009/09/sf-bay-qs-8.php CureTogether http://www.curetogether.com/ PatientslikeMe http://www.patientslikeme.com/ FitBit http://www.fitbit.com/ DailyBurn http://www.dailyburn.com/ resources