Checking in on the Quantified Self at 10
They’ve been ahead of the curve on personal health tracking and citizen science. What will their doctors and the rest of us learn from their data addiction?
I am so charmed by the Quantified Self community. In my second hometown of Amsterdam for their 10th anniversary conference last weekend, I expected to find people showing off their coding skills, or proving how much more disciplined they are than I. What I found instead was an incredibly warm and nurturing group of people who often had more questions than answers. They have a lot of information (and data!) to share, but they usually don’t consider themselves experts. If anything, they can be a bit self-deprecating about their obsession with measuring themselves, and don’t pretend to have answers for anyone but themselves and their fellow QSers. Amazingly, no one is trying to get you to use their dashboard.
If I’m not mistaken, not one person talked about what they do for a living or their degrees, even when they were computer scientists, or neuroscientists, or other people whose backgrounds might make you sit up and listen a little closer to their story about having five years worth of personal sleep, food, and activity data.
There are cautionary tales about accepting data at face value, such as the one told by Whitney Erin Boesel, a young woman whose doctors said her hormone levels were too low for her to conceive. Bouncing her beautiful and talkative baby on her hip months later, it was clear she didn’t give in to the data.
The QS community could be positioning itself as the vital center of the movement to document and discover ourselves and give our doctors data that could lead to breakthroughs. You might think QSers would have ambitious growth plans, and a PR outreach effort. Instead, they remain a relatively small group of 8,000 members, with relatively little media exposure. When they are recognized, it’s often a bit pejorative. A pharma CEO advised me to avoid talking about the QS community if I wanted to preserve credibility with “real scientists.”
On the occasion of its 10th gathering in Amsterdam last weekend, cofounder and leader Gary Wolf was musing about how the QS community was ahead of its time, before ubiquitous wearables and a growing citizen science movement. So how does QS stay ahead of the curve? More data, of course! Both Gary Wolf and Thomas Blomseth Christiansen, a guy who recorded every single time he sneezed for five solid years, could be harbingers of the next stage of the quantified self. Gary continuously monitored his blood sugar and found wild fluctuations in his glucose levels, meaning that a typical test done one day would have diagnosed him as perfectly healthy, and one on another day would have fallen outside the range of normal. Worse, it showed inexplicable spikes in the middle of the night. His next project is to see if continuous cholesterol monitoring will show similarly wide fluctuations. For Thomas, when his tracking devices gave him readings he couldn’t explain, he layered in more precise instruments to track the pace and number of steps in his runs.
Most consumer devices aren’t as accurate as they need to be. Doctors know that spot checks with more reliable medical-grade devices don’t necessarily lead to an accurate diagnosis — but those, along with physical observation, are all they have to go on, usually. And variability isn’t necessarily a symptom of disease or malfunction. Or is it? Maybe the QSers will help us find out.
Maybe I’m not obsessively tracking my own data because I’m not always as disciplined as I should be. QSers have a solution for that — apps to keep them on track and apps to deliver insights:
For those who can’t control their screen time, an app to block the use of other apps. Just don’t hack it, because that’s, you know, cheating.
An app to support you in achieving your goals. It’s free as long as you meet your goals, but costs real money to use when you fall off the wagon. Think of it as Reminders, with a sting.
An open source data viz tool.
Writes scripts for putting tiles on your dashboard (Android only).
An old standby, If This Then That is essential for scraping data from devices, websites and social media (including Amazon Alexa, Facebook, Twitter, Instagram, Fitbit, Slack, Skype, etc.) to integrate with your personal dashboard.