Alexandra Carmichael knows her body inside and out. She regularly measures about 40 parameters: number of calories, mood, weight, movement, quality and quantity of sleep, headache and – last but not least – sex. Carmichael is no carrier of any sort of severe disease which would require a permanent monitoring system: rather, she is the director of Quantified Self.
Making health measurable
The people behind the movement are Gary Wolf and Kevin Kelly, two technology journalists from Wired. Several years ago they developed Quantified.com, a platform for users to exchange measured values. Strictly speaking, the idea has its roots in the last century: pain diaries of migraine sufferers, blood sugar records of diabetics or blood pressure tables of hypertensives are analog forerunners of the new trends. Followers of Quantified Self however rarely have chronic disease that must be closely monitored. Rather, they hope to improve their fitness through continuous monitoring or to diagnose diseases by noticing changes in values long before clinical symptoms occur. “The precise and unerring statistics, as the base assumption, protects one from lying to oneself or not to take notice of strengths, weaknesses, opportunities and dangers in life”, says blogger Sascha Lobo confidently.
Hardware and software in an intimate union
Anyone starting out here must first and foremost select trackers, i.e. measure probes. Many come originally from performance sport or intensive care. A few things to highlight: via accelerometers such as “Fitbit” or “Body Media” users track the number of steps taken per day and then calculate mileage and burned calories. The sensor also detects via movement done at night how well – or poorly – the situation is regarding sleep. Or how about a set of scales that transmits its data wirelessly to a smartphone and publishes successes via social media? If technology lovers then buy Zeo as well, they then have a mini-EEG in the hand. The device offers complex technology in a compact headband. Disturbances in the process of falling asleep or staying asleep? No longer an issue thanks to high tech. And the wireless alarm rings only during non deep sleep phases. Measurements alone are not enough; users evaluate their data in portals such as CureTogether, Ginger.io, DAYTUM or PatientsLikeMe and make all the bits and bytes of the community available. Tictrac for example offers some interesting features: aside from measurement values, other sources are able to be integrated, such as activities in social networks, or e-mails about events via general office software. Thus the platform can even make assessments of one’s own time management. The data provides benefit to all “self-trackers” equally.
Together we are strong
Gary Wolf sees Quantified Self as his own form of swarm intelligence: the more the thousands of members of the platform evaluate and save measurements, the more accurate predictions can be forged. There are now over 40 groups that meet up to exchange ideas. Particularly strong is the following in San Francisco, where it all began. The interactions here comes from as many as 2,400 members. Even Germany is part of it: from the 11th to the12th of May in Berlin the congress Digitale Selbstvermessung – Leben nach Maß (Digital Self-Measurement – Life by measure) took place. Worldwide ever more “self-trackers” put their body functions under the microscope. “It seems to interest other people”, says Carmichael.
A slice of freedom
One good reason: empowered, independent patients would be able to discuss their data in the future on an equal footing with doctors. Medical practitioners would have access to larger data pools, rather than only ascertaining laboratory measures in the event of illness. In addition, clinical studies are met with deep suspicion. “Online communities with quantitative patient data are well suited to examine the effect of drugs”, says Paul Wicks of PatientsLikeMe. In 2008 he was already able to show with data from this community that lithium salts have no influence on amyotrophic lateral sclerosis (ALS), as opposed to views in earlier works. Meanwhile, scientists formulated a hypothesis that high prenatal testosterone levels may come into question as a risk factor. Wicks also showed that epilepsy patients have easy access through portals to others affected – a new concept that in the U.S. already competes with self-help groups. Previously, a third of the respondents knew no other person with this disease with whom to make exchanges of information. Among these patients there exists vast potential as well – for pharmaceutical research.
Off label – no problem
Numerous drugs after introduction to the market are used for other indications: this is known as “off label”. Dr. Jeana Frost, of the VU University in Amsterdam, has showed that patient-centred online platforms complement classical studies done in order to better understand the effects of drugs. For example, PatientsLikeMe can point to 1,948 reports on modafinil, and for amitriptyline there exist 1,394 records. The thing that’s astounding: Modafinil was employed for use in only one percent of cases as the medical indication for extreme fatigue or narcolepsy. Patients use the drug off label instead for multiple sclerosis, Parkinson’s disease, fibromyalgia, or Chronic Fatigue Syndrome. And with success: A modest benefit was seen in 37 percent of the patients, and 36 percent even reported significant effects. Amitriptyline fared no differently: Only nine percent use the drug for depression. Beyond these approved indications, the drug helped against excessive salivation or urination – users deduced this from such occurence as side effects.
The community is commercialised
Because of this pharmaceutical expertise alone Quantified Self has shed its initial nerd image. The big boys in many branches have long since had to recognise the potential that lies behind the community. And so nobody is surprised that at the community meetings representatives from Microsoft, Intel, Fujitsu, Nike and Adidas often find their way past the door in order to showcase new innovations from their labs – better testers will barely be found by the companies. However, critical voices were raised when Quentic, a provider of self monitoring systems, suddenly flirted with insurance companies. Will payments in the future be influenced by the company’s Health Score? Self-Tracker will know how to prevent this – not with fewer measurements, but with more social pressure.