2014-04-03

Co.Exist

The Cofounder Of 23andMe’s Next Project: Mining Your Quantified Self

Aggregated together, all of the health data that people are starting to track for themselves can be harnessed to answer questions that no doctor ever could.

Online forums are overflowing with people’s burning health questions and anecdotal advice: “What are the long-term effects of running?” and “Can I turn myself into a morning person?”

This is why the rise of wearable technology that tracks everything from our footsteps to our sleeping habits has a far bigger potential than just quantifying the “self.” The next phase could turn everyone and anyone into a researcher who can help answer health and wellness questions that even doctors aren’t too sure about.

Linda Avey, a health startup veteran who co-founded of 23andMe--the company that made the idea of exploring one’s genome appealing to mainstream consumers, has been quietly thinking about this problem for the last two years.

This summer, she’s getting ready to launch Curious, a platform that takes self-tracking enthusiasts out of their own isolation in analyzing their data. The goal is to allow individuals to go beyond simply noticing that they gained weight over Christmas to collaborating on and answering bigger questions. In a way, it’s a little like 23andMe, which banks its business on aggregating large numbers of people’s DNA so that researchers can mine a large database for new insights about how genes affect health and disease.

“What we’re building with Curious, we hope, is an easier way for people to come together and share questions about what’s going on in their lives and to use questions to try to formalize and narrow in on a topic,” says Avey. “The people can approach the question and say, 'Okay, if I gathered a certain amount of data would that actually help me answer my question in a more quantitative way?'”

Curious isn’t available to the public yet (you can sign up for an early invitation on the site) though Avey is aiming for a soft launch in July. It is in a testing phase with several communities of people who have serious but rare diseases. These are good beta testers because they have the the biggest vested interest in tracking their own data and have very focused questions, says Avey.

Read more about 23andMe and its quest to offer cheap DNA testing to anyone, in this profile of CEO Anne Wojcicki.

The ongoing pilot testing with the nonprofit LGMD2i Research Fund, which focuses on a form of muscular dystrophy, is a good example of how Curious could be used. Researchers have had trouble studying the disease because there aren’t enough patients located within close proximity of each other, but with Curious that could change.

“By speaking to patients, we learned that they were always cold no matter what they did--that’s something that no doctor, no scientific article about the disease describes." It was a serendipitous finding, by talking to people and through the Facebook group, says Claudia Mitchell, program director of the fund. “We realized there’s a lot of information out there. But the Facebook groups are not mineable--we couldn’t look at it in a quantitative way.”

When Mitchell found out about Curious, she hadn’t seen any platform or portal that was open and unstructured, like Facebook, that could do the data analysis, too (her non-profit organization later facilitated investment in the company, a sign of their enthusiasm).

An initial cohort of eight patients with the disease are trying out Curious this month, and giving design feedback to the company. The platform aims to integrate data from any connected wearable device--in this case the patients use a pedometer. Every day, the patients open up Curious on their phone or desktop and enter their own data about their falls, medications, and activities as well as whatever else they feel is relevant. Curious can then aggregate and mine the data to help pick out trends or identify unexpected questions that could be tested or asked.

“We are of course going to be looking for things that make sense to us as researchers, but there will also be this element of making automatic correlations and finding unexpected things,” says Mitchell, who expects to soon roll it out to the entire patient community. “The more data the patients will generate the more correlations will be made.”

But the bigger question is whether more average people without serious health problems will be interested in this kind of communal tracking. In a way, that’s a function of how popular wearable devices have become and to what extent entering all kinds of data can be made as easy as possible. By incorporating other data streams, such as weather information or environmental data like noise, Curious could start to help find even more interesting associations.

“There’s just a whole boatload of questions now that people have, and I don’t think our medical system is even equipped to answer them,” says Avey.

[Image: Abstract via Shutterstock]

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2 Comments

  • Alice Baker

    This does sound promising but I really hope whoever analyzes this data will make an attempt to understand if the people who participate in this community are generally representative of the larger population of persons with that illness. Selection bias can really skew associations if you're not careful to think about the characteristics of the people you're studying versus the characteristics of all persons with the disease under question. Let's hope the company collected enough demographic data from the participants to figure out how they compare to the people with the disease who aren't using technology. . .

  • Tiffany Lee Brown

    This sounds like a great way to gather correlative data, with results that researchers can then put to actual test. I hope they take on fibromyalgia and chronic fatigue syndrome!