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this is about the knowledge an aggregate data hides but the best way to aggregate data is through individuals' having ownership and choice not to share their personal data.
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Doctors have lots of experience measuring heart rates and rhythms during and after serious events--during a heart attack, for example, or in patients who have longstanding heart disease. But no one has ever been able to observe what heart rhythms are like on a continuous basis in the general population.
fascinating...
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Instead of seeing a snapshot of the body taken during the typical visit to a doctor's office, iPOP effectively offers an IMAX movie, which in Snyder's case had the added drama of charting his response to two viral infections and the emergence of type 2 diabetes.
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Snyder, now 56, says he began the study 2 years ago because of a slew of technological advances that make it feasible to view the working of the body more intimately than ever before. "The way we're practicing medicine now seems woefully inadequate," he says. "When you go to the doctor's office and they do a blood test, they typically measure no more than 20 things. With the technology out there now, we feel you should be able to measure thousands if not tens of thousands if not ultimately millions of things. That would be a much clearer picture of what's going on."
I suppose a good sign the Economist is writing about this even if the whole article is yet again taking the angle of 'how odd, freaky, geeky but interesting things these people are doing'. Obviously, that's considered de rigueur with such topics these days. That said, the health angle is well justified, though until self-quantifying demand side is trying to get the supply side (i.e. healthcare industry) to work with them, it's not going to get very far. Ditto for not focusing on more sophisticated data analysis and visualisation.
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They are an eclectic mix of early adopters, fitness freaks, technology evangelists, personal-development junkies, hackers and patients suffering from a wide variety of health problems. What they share is a belief that gathering and analysing data about their everyday activities can help them improve their lives—an approach known as “self-tracking”, “body hacking” or “self-quantifying”.
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But new technologies make it simpler than ever to gather and analyse personal data. Sensors have shrunk and become cheaper. Accelerometers, which measure changes in direction and speed, used to cost hundreds of pounds but are now cheap and small enough to be routinely included in smartphones. This makes it much easier to take the quantitative methods used in science and business and apply them to the personal sphere.
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"I gradually noticed that my perception of some foods shifted from thinking they were delicious to starting to feel their heaviness and the effects they were going to have on me. The act of paying greater attention has an effect on your behaviour."
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But proponents of a more individualised approach to health argue that traditional clinical trials also have flaws, such as producing results that are averaged over groups that may not apply to individuals with particular genetic make-ups or other variations. Some even talk of "hacking" their own bodies – using the more detailed information to change things for the better.
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Last paragraph sums up the pressures on our data: "As it has with Facebook, selling personal data is certain to raise privacy concerns. Healthrageous's Lee says his company plans to market the insights it gleans from its data, rather than the raw data itself. PatientsLikeMe, however, explicitly tells users that any information they share—except identifying details, such as name and e-mail address—may be shared with pharmaceutical companies or other partners. Given that PatientsLikeMe has more than 100,000 members, users seem confident that the tools it offers, and the hope of medical advances generated from their data, are worth the loss of privacy."
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