Human Data

"There is an increasing appreciation by people that they actually own their data"

In the field of health research, data have long been held closely by the researchers who collected it. The knowledge is considered proprietary information owned by whoever conducted and funded the study, even if it has the potential to lead to future health advances.

Now, a slew of new companies and organizations promise to tear down the barriers to data collection and sharing by encouraging patients to give away their data. In addition to fostering diverse research projects, data donation helps patients learn about themselves and improve their own treatment, the companies say. The change has taken root in the medical community, and if roadblocks to privacy and data ownership can be overcome, data sharing efforts may just change the nature of research.

“Increasingly people are realizing this is an ethics issues,” says Yale Professor Harlan Krumholz of the need for relevant data to be shared among researchers. “If our job is to save lives, then it doesn’t make sense that we not share data and get as many people working on the problems as possible.”

Generally, here’s how it works: Patients contribute information about their health and receive a personal benefit of some sort. At PatientsLikeMe, for instance, patients can get treatment tips from others who have the same ailment. 23andMe, another service, provides participants with genetic information that can be used to trace ancestry. There’s also the benefit of knowing you’re contributing to medical advances.

Garth Callaghan, who suffers from kidney cancer and shares his data with PatientsLikeMe, says sharing gave him a sense of control over an ailment that he felt had taken over. “Other patients help me direct my medical team instead of me just being a participant and listening to my doctors and saying yes,” he says, adding that he hopes that sharing his data means other patients won’t need to “reinvent the wheel.”

With data in hand, the companies collecting information then act as intermediaries, deciding which research projects are worthy and facilitating access. But unlike in the long-standing research model, in which a single set of data is typically used for one study, data can be used for many projects with many different goals. In most cases, participants are also notified of the results of studies in which their data was used.

Collecting data without an initial driving question also upends traditional procedures of medical research, says James Heywood, co-founder of PatientsLikeMe.

“The world is built on this old model of raise a question, design an experiment, recruit a group of people to solve it…not in this model that we’ve built,” he says, which he calls an integrative learning model.

Health data sharing companies are only a few years old, but their influence has grown quickly. Prominent academic institutions like Yale University have signed on, along with big pharmaceutical companies like Johnson & Johnson and Pfizer.

“When we started this, it was seen as amusing. People were thinking ‘Are you kidding me?’” says Stephen Friend, who runs a non-profit he co-founded that builds platforms to facilitate data sharing. Now, he says “hubris has turned into humility” as researchers have realized the potential.

Still, Friend acknowledges there’s a long way to go and that research money spent on data intended to be shared still represents the “0.1%” of research funding.

Privacy and the question of who owns medical data are some of the concerns holding back data-sharing efforts. Typically, scientific data has been owned by whoever collects it, often universities or academic institutions that fund research. Each company has its own philosophy about who owns data when it’s shared.

Emily Drabant Conley, director of business development at 23andMe, says her company’s policy is “you own your data.” PatientsLikeMe has a policy of “mutual license,” in which both patients and the organization have rights to the data. Regardless of which model prevails, the notion that study participants have any right to their data is a noteworthy change.

“There is an increasing appreciation by people that they actually own their data, and that can actually be useful to them,” says Krumholz. “All these things are coming together in a movement to empower patients and people.”

Forget New Year’s resolutions. Your body needs these right now.

The holidays are here and — along with good tidings of comfort and joy, of course — they bring stressful shopping trips, overeating, late-night Elf on the Shelf antics, and a general abandonment of usual fitness routines.

But as you button up the year’s end, you don’t need to fall apart. These five connected fitness devices can help you stay on track before you get sidelined by the season’s trappings:

Basis Peak

Fitness bands and smart watches are on everyone’s list this year, but you might be better served to pick this one up early, rather than letting it sit all wrapped up for a month. The $199 fitness and sleep tracking watch has a few sensors that will not only help you survive the holiday, but be able to view the month-long flurry as a time to thrive.

In addition to the usual step and calorie counting, Peak also monitors body heat, sweat dissipation, and heart rate (take that, shopping stress!) without a chest strap. So when you’re running from store to store looking for that Snow Glow Elsa doll, you can honestly declare it a workout.

And then a month from now, when life gets back to normal, this Android and iOS-compatible watch can also automatically track your sleep (without having to tell the device you’re down for the night) and set gradually increasing fitness goals, so you can make next year your best one yet.

Fitbug Orb

Tiny wearables like Fitbug Orb are great for tracking motion, but it’s up to you to actually do something with that information. This $49 sensor not only keeps an eye on steps taken, calories burned, and sleep logged (and syncs this data with an iOS app), it also integrates with KiQplans, which are weight loss programs that combine your movement data with fitness activities and nutrition tips to help you actually slim down.

With 12-week, $19 regimens like Beer Belly Blaster and Goodbye Baby Bump, KiQplans are a good way to turn the most wonderful time of the year into an end-of-the-year, data-driven boot camp. Just make sure to stay away from the figgy pudding.

Push Band

If you’re the kind of fitness freak who won’t get shaken out of his or her routine, then this is the wearable for you. The first fitness tracker aimed at measuring strength, this $189 arm band links with an accompanying Android or iOS app to monitor not just your activity but your output. Pairing with your smartphone via Bluetooth, the app and device lets gym rats set strength, power, speed, and muscular endurance goals. Then, within the app, the user selects from a list of pre-programmed exercises, sets a weight load, presses a button on the armband and starts pumping.

After each set the app reviews velocity and power of each rep, as well as the resting time between, and can even recommend to going up or down in weight the next time you do that exercise. And when the workout is over, a progress tracker gives a session summary in full detail. It’s about working out smarter, not necessarily harder.

Sense Sleep Tracker

Just like Santa, Sense sees you when you’re sleeping, and knows when you’re awake. And it knows if you slept bad or good, with proximity, ambient light, particulate, temperature and humidity sensors, so you’ll learn to sleep good for goodness’ sake.

This $129 Wi-Fi, Bluetooth 4.0 and ANT-connected bedside and pillow-mounting combination sensor can help you to learn about your sleep, from patterns that you go through naturally, to disruptions in your environment that might be interrupting your shuteye. Its microphone detects your snoring and a small speaker wakes you up with gentle, gradual sounds.

But most importantly, the sleep sensor’s Android and iOS app learns your sleep cycles, so it can wake you up when you’re in a light level of sleep near to when you wanted to be awake, rather than at a specific time when you might be off in Never-Neverland.

Withings Smart Body Analyzer

It doesn’t take much to use this Internet-connected scale — literally, you just have to stand there. But by tracking weight as well as body composition data like fat mass and body mass index, this app-synced device can be more helpful than even the most sophisticated fitness trackers.

Still, loaded with sensors, it’s not like this smart scale isn’t trying. Able to automatically recognize up to eight individual users, track heart rates, and even monitor indoor air quality, it can give you a well-rounded picture of your overall health. And paired with Withings’ Health Mate app (and more than 100 other partner apps), it can help you gradually meet weight-related goals — so you won’t have to ask for elastic-waist lounge pants for Christmas this year.

The next revolution in personal health may be the little band that tracks your steps

“The unexamined life is not worth living.” So said Socrates, and I’m trying to live up to the philosopher’s credo–in a 21st century way. On my wrist I wear a Jawbone UP24, a rubber bracelet that tracks my steps and calories burned over the course of the day. To make sure I don’t exceed the calories burned with calories consumed, I track my diet with the iPhone app MyFitnessPal, which syncs up with my Jawbone data. The Jawbone bracelet uses a motion sensor to track my sleep time, and the Jawbone app uses algorithms to calculate the hours I spend in light sleep and deep sleep over the course of the night. While I trained for the New York City Marathon, I tracked my runs with the iPhone app RunKeeper, which allowed me to see myself very slowly getting somewhat faster.

That kind of numeric detail probably isn’t what Socrates had in mind, but more and more of us are engaging in some form of digital self-examination. Research firm ABI estimates that 42 million wearable fitness and health devices will be shipped in 2014, up from 32 million in 2013. The movement even has a name–the quantified self–and its geekiest adherents go far beyond what I could bring myself to try. They carry digital cameras around their necks that capture a constant stream of visual memories and wear heart monitors and blood-pressure sensors up and down their torsos. They treat their bodies as guinea pigs and gather in meet-ups and conferences to swap stories–backed by data, of course–about the best ways to lose weight, work more efficiently and get smarter.

Hardcore disciples and those who, like me, just try to remember to wear a wearable share the same hope: that through collecting ever more information about our bodies and our behavior, we can find a better route to self-improvement. Doctors and researchers see something else in the movement too–a revolution that could change everything from how they care for recovering surgery patients to the way they administer certain medications. Tracking devices may eventually even upend how much you pay in health-insurance premiums. And they may ultimately change the way we relate to our own health.

But before you can really know thyself, you need to know thy data.

The logging of personal information has a rich history. Benjamin Franklin kept a meticulous chart book noting his progress on 13 virtues, and dieters in programs like Weight Watchers have long counted calories. But as anyone who has ever tried to keep a regular journal knows, recording it all on paper requires a commitment few of us can keep up for long. Digital self- tracking devices–often connected to the Internet through our smartphones–take the effort out of recording and compiling. You get better, more regular data, and it’s harder for you to fudge it to make yourself feel better. That also means the information is easily shareable with doctors.

To that end, hospitals are already a step ahead. The Cleveland Clinic has asked its employees and their family members–more than 50,000 people in all–to use the Pebble, an activity tracker, in the hope that it will encourage them to move more. So far, more than 18,000 people have met the goal of 100,000 steps a month or 600 activity minutes a month for six months. (That’s roughly 20 minutes a day.) There’s an added benefit: employees and family members who use the Pebble are eligible for a lower health-insurance premium.

Using Jawbone’s sleep app, I’ve seen how data analytics can make a daily difference. With Jawbone, I’ve come to understand that certain factors–stress, alcohol and caffeine–can influence how restful my sleep really is. The device’s accelerometer detects whether I’m moving and, roughly, whether I’m awake or in a light or deep sleep. The next morning, the app displays a graphic summary of my night. Over the weeks, I’ve been able to track how my sleep time has waxed and waned and how often I meet the 7½ hours I’ve set as a nightly goal.

I’ve found that I get the most sleep on weekends–unsurprisingly–but I’ve also noticed that my sleep tends to decline as the workweek drags on, perhaps because stress levels rise with each day. Just keeping track of how much time I’m actually spending awake has encouraged me to get to bed at a relatively reasonable hour and overcome the temptation to watch one more episode of Damages on Netflix.

Health professionals are finding that simply tracking an activity can encourage people to do more of it. In Minnesota, for instance, the Mayo Clinic experimented by using activity trackers to help with postsurgery care. In 2013 the hospital equipped nearly 150 heart-surgery patients over the age of 50 with Fitbit activity trackers on their first day of recovery. The reason: older patients tend to lose mobility in the wake of major surgery, which can slow recovery. The researchers found that patients who took the most steps every day–data tracked by their Fitbits–were significantly more likely to leave the hospital earlier than those who were less active, and they were also more likely to return home rather than to a nursing facility. Doctors knew that only because they were keeping track of a data point they had never bothered to record before.

The most valuable analysis comes when researchers are able to draw on a wide pool of data. And the growing ubiquity of fitness and activity trackers has made that pool into an ocean. It’s also caused some worries–the IT security firm Symantec reported in June that fitness trackers were often vulnerable to hacking. But the data keep flowing. Jawbone users around the world have recorded more than 130 million nights of sleep–which, as the company’s vice president of data, Monica Rogati, notes, technically makes it the biggest sleep study in the world–as well as more than 1.6 trillion steps and 180 million items of food. “You take all that data, and you can see interesting patterns emerge,” she says.

For example, Rogati knows that in the U.S., people in Southern states move the least. She knows that New Yorkers have a huge swing in sleep time between the weekdays and the weekends, whereas people in Orlando–a city well stocked with retirees–get similar amounts of sleep throughout the week. During the 2013 Super Bowl, which went down to the wire, she saw sleep numbers drop nationwide–but not during the 2014 Super Bowl, a blowout that many people tuned out early in the night. She can actually see the passage of Ramadan, a month when observant Muslims fast throughout the day, in a Middle Eastern city like Dubai. “People become less active during the day and sleep more, essentially become nocturnal,” she says. “The data tell you something about the signature of the city.”

All this information will matter only if we can learn something more valuable than the fact that a boring Super Bowl leads to an earlier bedtime. In a growing trend, Jawbone uses its data to produce personalized nudges designed to encourage users to sleep more, be more active and eat better. That analysis has also helped produce the smart-alarm function for the UP wristband. The Jawbone smart alarm tracks which sleep stage you’re in near your preferred waking time and buzzes your wrist when you’re in a light stage–hopefully nudging you out of bed at the right time biologically. “Sleep is as important as fitness and nutrition,” says Jason Donahue, product manager for data and insights at Jawbone UP. “By tracking it, you can give it the attention it deserves.”

Activity trackers are far from perfect. Some are bulky and unfashionable, and all suffer from accuracy problems. A 2014 study by researchers at Iowa State University looked at top fitness trackers and found that on average, they were 10% to 15% off in calculating the calorie burn from exercise and daily activity. But with each generation, the devices are getting smaller and more precise. The highly anticipated Apple Watch is supposed to be able to detect which activity you’re doing as you do it, along with your heart rate, which helps improve calorie-burn calculations.

Jawbone’s newest device, the UP3, will track heart rate using bioimpedance sensors, which measure the resistance of body tissue to a tiny electric current generated by the bracelet. In the future, the company believes the sensors will be able to detect skin temperature, respiration, hydration and more. That means greater quantities of finer data to feed into Jawbone’s algorithms, which in turn improves the advice the company dispenses as it tries to get you to eat better, sleep longer and be more active. “No one else has been able to get this amount of data on something small enough to wear on your wrist 24/7,” says Travis Bogard, Jawbone’s vice president of product management and strategy.

The new UP will enter an already crowded fitness-tracker market. Microsoft just released its first tracker–the Microsoft Band, which promises to track heart rate and an array of other data points. The first batch of smart watches using Google’s Android Wear operating system provides fitness functions like tracking runs or bike rides. And increasingly, most smartphones from the likes of Apple and Samsung have pedometers built right in.

That puts extra pressure on a company like Jawbone that produces dedicated activity trackers. There’s a lot riding on the success of the UP3, which Bogard and other executives at Jawbone were already using when I visited the company’s San Francisco headquarters in early October. But the excitement at Jawbone was generated less by the devices than by the data they produce–and the unexpected lessons Rogati’s team of data scientists could produce from all those bits and bytes. One wall of Jawbone’s open-plan office was covered with data stories generated by tracking millions of users, ranging from how the World Cup affected sleep patterns to a list of the most popular foods by time of day. (Beer: very popular after midnight, not so much before noon.)

Bogard believes that the future of self-tracking isn’t about the tracker; it’s about the self and the data it produces. “Our belief is that the tech itself should disappear,” he says. “The technology becomes an enabler to help us become more human.”

Once tracking has become ubiquitous, it could produce a health revolution. Right now, doctors have to wait for us to feel bad enough to bring our bodies into the shop; until we do, they’re in the dark. Data tracking could make it a lot easier for someone who is, for example, trying to manage a weight problem–especially if the data could be automatically uploaded to a doctor’s office. No more lying about how much you exercise or snack.

And personal data can mean personalized health care. The real winner may be not the company that makes the best device but the one that can produce a meaningful signal out of the noise of personal data. “No one thing works for everyone,” says Andrew Rosenthal, the group manager for wellness and platform at Jawbone. “We can help steer people toward the health solutions that work best for them.”

But as someone who began practicing self-quantifying for this story and has since become all but addicted to it, I can say there’s a personal side to this movement as well. So much of our health today feels out of our hands, the province of medical professionals. Self-quantifying has allowed me to take control of my health, to track and tweak my habits, to make myself a better person. Today I feel like a test group of one–but I’m in charge of the experiment, and I benefit from the results. You can count on it.

–WITH REPORTING BY ALEXANDRA SIFFERLIN / NEW YORK

Having seconds this Thanksgiving? Try these tech-fueled fitness tips first.

Once upon a time, mashed potatoes were stick-to-your-ribs food. Nowadays, they just pile on your waist. Still, come Turkey Day, there’s no way you’ll be able to resist an extra helping, and with today’s fitness trackers, you won’t have to.

Helping people to quantify their activity and catalog their calories, the latest smart health gear doesn’t just serve up heaping spoonfuls of data, they also give you new inspiring ways to get healthy. Catapult from the couch to the gym — after your post Thanksgiving dinner nap, of course — with these six gadget-driven fitness tricks:

Stop Sucking Wind

If you’ve ever laced up and hit the pavement only to suck wind — hard — Adidas Fit Smart will help you to slow down and build your respiratory and cardio skills back up gradually. Using a color-based heart rate display that shows users how hard they’re exerting themselves (blue is resting, green is active, orange and red are pushing it), the $199 wristwatch also syncs with expertly organized fitness plans via Adidas’s MiCoach system.

Of course, when it comes to fitness trackers, people tend to overlook Adidas, but through MiCoach, they have been in the game longer than almost anyone, and their platform is full of training regimens for runners whether they are just aspirational or already highly competitive.

Comfort is Key

The biggest problem for people who use fitness trackers is finding the motivation to wear one all the time. Sure, the bigger the gadget (and the more of them) the better the data, but sometimes having the freedom to move is all about feeling free when you actually do move. Women, burdened with chest-strangling sports bras, have it worse than men — unless they don a Sensoria Fitness Sports Bra.

This $149 combination heart-rate monitor and support garment embeds textile sensors into its light, moisture-wicking fabric. The no-fuss sensor is a natural fit on the chest, and with low-energy Bluetooth technology connecting it to your smartphone, it will last up to eight months before the battery needs to be replaced. In addition, the heart rate monitor is compatible with Strava, Runkeeper, and MapMyRun, top fitness-tracking apps for your smartphone.

Get Fighter Pilot Fit

Exercise can feel like drudgery, but instead of thinking of yourself as a slob, imagine yourself as an elite athlete — after all, that’s how athletic companies think of you. For instance, Nike may have developed sneakers for Michael Jordan, but they made a lot more money selling them to aspiring ballers like yourself. So next time you suit up, give yourself some credit. Lifebeam Hat actually packs technology that has helped track fighter pilots’ vitals mid-flight. A lightweight, breathable $99 running hat, it has sensors that measure heart rate, steps, and calories burned, sending this data along to ANT+ equipped devices or to smartphones via an embedded, low-energy Bluetooth chip. And if you’d rather ride than run, Lifebeam has a bicycle helmet version, too.

Watch Your Waist, Not Your Wallet

Gym memberships are only guaranteed to make your wallet slimmer, and they could fail at helping you lose weight. And though expensive, touchscreen, heart rate-monitoring trackers are currently all the rage, they also offer that same empty promise. Meanwhile, inexpensive activity monitors like the Misfit Flash take much less investment and can offer the same immense upside.

Discrete, waterproof, and versatile, the $49-for-pre-order, disc-shaped device can be worn on the wrist, belt, or even around the neck to monitor steps, calories burned, distance covered, and sleep quality. It’s always on and has a battery that lasts up to six months, syncing to your smartphone via low energy Bluetooth. But at that low a price, Flash lacks something that other, more expensive trackers bring to the table — the guilt over how much you spent on it.

Listen to Your Heart

According to a 2014 study by the National Strength and Conditioning Association, music can help joggers shut out the world, run faster, bounce back more quickly, and heck, even enjoy themselves more. It’s all very technical, but then again you probably knew all that already — because who doesn’t enjoy working out to their favorite jams? If you want to recreate the science for yourself, pop on the LG Heart Rate Monitor Earphone. As the name implies, the $179 headphones can catch your pulse while pumping out your favorite music, beaming everything back and forth to your smartphone via Bluetooth. In addition, with a workout voice guide and a playback control remote, you can skip all the mellow stuff when it tells you how slow you’re going, and crank up the volume on your power tracks to give yourself — and your research — a little extra kick.

Make Fitness An Always-On Activity

If you haven’t said it yourself already, be assured that experts are screaming it from the rooftops: desk jobs are killing us. Whether it’s doing laps around the office or taking walks around the neighborhood, everyone needs to insert some more movement into their day and to make fitness an ongoing effort. The discrete and comfortable Garmin VivoSmart can keep you moving by counting steps, measuring other health metrics like heart rate and calories burned and helping you reach your daily goals. Like smartwatches, the slim, $169 band has an OLED display that can display notifications from your Bluetooth-synced smartphone, letting you see everything from who’s calling to the content of your text messages. But most importantly, it gives you periodic reminders to get up and stretch your legs, even vibrating on your wrist to jostle you out of your seat.