Health

"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.”

Some people are better at waiting than others, and there’s a reason for that

We’ve all been there—whether it’s a job interview or an exam or a medical test, once it’s over, there’s nothing we can do but worry and wait.

Some people are better than others at weathering these periods, able to go about their normal lives while only occasionally dwelling on what might happen. The rest of us are nearly paralyzed by the uncertainty, riding waves of hope and despair as we ruminate over every possible outcome.

Kate Sweeny, an associate professor of psychology at University of California Riverside, has made a career out of studying these differences in waiting behaviors. And she’s identified the personality traits that may make distinguish those who are better and worse at waiting—some of which, thankfully, may be adaptable.

In Sweeny’s latest study, published in the Journal of Personality and Social Psychology, she and a colleague studied 50 law school graduates who were waiting for the results of the California bar exam in 2011. The lawyers filled out detailed personality questionnaires that revealed how well they managed uncertainty, whether they were more optimistic or pessimistic, and their self-esteem. She and her colleague also explored how well the lawyers managed their emotions and expectations, and the coping mechanisms they tended to use when they were anxious, among other things.

Not surprisingly, they found that having an optimistic outlook and being more comfortable with uncertainty helped people handle waiting periods better. But they also found that self-esteem did not seem to have much effect on tempering anxiety during the waiting period. In other words, it didn’t matter whether the participants had reported having high self-esteem or not; what mattered more was whether they tended to have a positive outlook and expect the best.

“I was surprised, since plenty of other research suggested that high self-esteem should help people get through difficult periods when their ego is threatened,” says Sweeny.

It also turned out that people’s states during the waiting period were dynamic, changing depending on how close they were to finding out the outcome. At the beginning of the wait, it was harder for all of the participants to distract themselves from thinking about the possible outcomes, and all of them—even the optimists—became more pessimistic or entertained more negative thoughts about the result as they got closer to the moment of truth.

Sweeny and her colleague also learned some interesting things about the coping mechanisms that people use to get through the uncertainty and anxiety of waiting. While distracting yourself with other unrelated tasks or thoughts was a common tactic, it didn’t prove very successful, especially if the participants were trying very hard to consciously distract themselves. “The fact that they are trying so hard to not feel so anxious actually backfires, because it anything it keeps the uncertainty in mind,” she says.

Anticipating bad news and trying to find the positive in it—preparing ahead of time for failure, in other words—may not help to ease the anxiety during the waiting period, but can be helpful once the result comes, since it gives people a sense of control over their future.

And the same is true for distancing your sense of self worth from the outcome. The more space you put between the result and your sense of self, the easier the final outcome may be. “If you convince yourself the bar exam is not that important, and that it’s just a silly exam you have to take and doesn’t reflect on your or your abilities, that space might help you not have a crushing blow to your ego if the news is bad,” she says.

But for all the worriers out there who can’t distract themselves from the anguish of “what if”’ while waiting, there’s also some solace. The study found that those who had a harder time during the waiting period fared better emotionally after the result, regardless of whether it was bad or good. The participants in the study who had more anxiety and frustration while waiting for their bar exam results and ended up failing, for example, were more likely to turn around and start studying for the test again compared to those who didn’t worry as much about the outcome. And if they passed, the relief was sweeter. “There’s a relief when the waiting is over and things turned out well, and you don’t feel as bad if you get bad news,” says Sweeny. “Either way, it’s a little less of a harsh blow if you had a tough waiting period.”

Still, to make that period less painful, she’s currently studying the effects of mindfulness meditation to help those who can’t stop obsessing over the outcome while they wait. The technique, she says, is perfectly designed for managing such waits, since it focuses on helping people to accept their negative emotions but not be driven by them. So while waiting will never be easy, some things in your control, at least, may make it more bearable.

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.

Yet another motivation for men to quit smoking

Men who smoke may be at greater risk for lung cancer than their female counterparts, according to a new study in the journal Science.

That might be because smoking reduces the number of Y chromosomes in blood cells. Previous research has shown that when blood cells lose Y chromosomes, which are only present in men, cancer is more likely to develop. While the precise relationship between Y chromosomes and cancer remains unclear, Y chromosomes are thought to play a role in tumor containment.

The study, led by a team at the Uppsala University in Sweden, examined data on several factors that might have led to a loss of Y chromosomes, including age, exercise, diabetes, cholesterol, education and alcohol. Smoking and age were the only factors associated with loss of Y chromosomes in the more than 6,000 men evaluated.

The study also provides some hope for men who want to quit smoking. Y chromosomes return to the blood cells of men who stop the habit, the study found.

“These results indicate that smoking can cause loss of the Y chromosome and that this process might be reversible,” said lead study author Lars Forsberg in a press release. “This discovery could be very persuasive for motivating smokers to quit.”

The American Cancer Society expects lung cancer to kill nearly 160,000 people in the United States in 2014, more than any other cancer.

Kalettes, a cross between kale and Brussels sprouts, are the latest hybrid vegetable to hit the U.S. market.

The new veggie was created by Tozer Seeds, a British vegetable-breeding company that brought the vegetable to the United States in fall 2014. The non-genetically-modified vegetable took 15 years to perfect. “The inspiration behind Kalettes came from a desire to create a kale type vegetable that was versatile, easy to prepare and looked great,” Kalettes’ website reads. “Crossing kale with brussels sprouts was a natural fit since they are both from the brassica oleracea species, which also includes cabbage, cauliflower and broccoli.” Kalettes, like many dark leafy greens, are very high in vitamin C. They’re also high in vitamin K.

In the early stages of Kalettes’ development, Brussels sprouts were dropping out of popularity in the U.K., and the new hybrid was thought of as a potential way to increase the veggie’s popularity, Modern Farmer reports.

Kalettes look similar to a small cabbage and are available at Trader Joe’s nationwide, as well as at some regional groceries like Whole Foods and Costco. Kalettes are are simple to prepare and cook quicker than Brussels sprouts, the company says. Taste wise, Kalettes have a nutty, savory flavor.

If you can’t rake the leaves or paint your nails without tweeting about it

In a tech-obsessed society where 500 million tweets are sent per day and 1.28 billion people use Facebook on a regular basis, how can you tell when your own love of “checking in” has gone too far? Alex Soojung-Kim Pang, PhD, technology expert and author of The Distraction Addiction, shares some of the most common signs that you should to sign off for a bit.

You make elaborate desserts and projects just to Instagram them

Did you spend extra time making your salad look picture-perfect or recreate a DIY off Pinterest just to appear crafty? If you’re guilty of situations like these, you may be ready for a break. “When you start crafting your life to be more Twitter- or Instagram-friendly, it’s time to step back,” says Pang. “Thinking about where you’ll go or what you’ll do with an eye to how it will appear on social media undermines your ability to be yourself,” he adds.

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You can’t rake the leaves or paint your nails without tweeting about it

We all have that friend on social media who can’t help but share every single detail of her life. Unfortunately, you may also be that friend. “Composing tweets about what you’re doing as you’re doing it or feeling the need to report your thoughts in real-time are all signs that social media is taking over your life,” says Pang. “There are only 24 hours in a day, and the more time we spend sharing with our friends what we’re doing hour-by-hour, the less time we have to discover for ourselves why we enjoy these activities and what our days are adding up to mean,” he explains.

You know way too much about your connections

“The big warning sign to look out for here is when you start becoming compulsive about knowing the statuses of your social media ‘friends,’” Pang says. So if you readily know that the random guy you once met at a party just bought a house, and you’ve already stalked his wife’s Facebook profile, you may want to reevaluate how much time you’re spending online. “The irony of social media is that while it can be great for keeping up with the details of our friend’s lives, too much engagement can obscure the big picture and weaken our ability to make sense of our own lives,” adds Pang.

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You feel like you don’t measure up to your successful/happy/thriving friends

Thumbing through your social feed can quickly lead to an inundation of good—and often envy-inducing—news. Witnessing your friends’ promotions, engagements, and extravagant vacations can stir up feelings of jealousy and inadequacy, whether you realize it or not. In fact, spending too much time on social media can cause feelings of negative body image among women, increase the amount of anxiety a person has on a daily basis, and even lead to damaged friendships and relationships. “When keeping up with your friends’ lives gets in the way of you happily leading your own life, you need a break,” says Pang.

You feel anxious when you don’t have access to your phone

Do you check Facebook at traffic lights or while talking to your friends at the table? Do you refresh your Twitter feed as soon as you wake up or as you’re falling asleep? “The more you’re on social media, the less material you actually have to talk about that’s interesting and worth having other people hear,” says Pang. Think about it: How many conversations or real-life events have you missed out on because you were too wrapped up in your phone? The more time you spend liking, the less likable your own world ends up becoming, Pang explains.

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How to take a step back

Start by setting aside a specific time every day for catching up on social media. “Humans have a schedule for exercising, going to work, eating meals, and sleeping. So if one hour per day, at the same time each day, is good enough for dinner, it’s good enough for your news feed,” says Pang. When you do post status updates, limit yourself to only discussing life stories, instead of off-the-cuff thoughts or irrelevant snapshots of your food or your dog (no matter how cute he may be).

Finally, experiment with temporarily limiting your access. “Challenge yourself to abstaining from social media for a full week, or, if that’s too daunting, just delete Twitter, Instagram and Facebook from your phone for a week,” Pang suggests. “Does your life get better or worse? You may find that you feel perfectly satisfied without social media in your life,” says Pang.

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This article originally appeared on Health.com.