Wearable devices portend vast health, research and privacy consequences

  • Larry Smarr, a professor in Computer Science and Engineering at Univ. of California, San Diego's Jacobs School, tracks his own biometric data- like the charts displayed behind him.

    Larry Smarr, a professor in Computer Science and Engineering at Univ. of California, San Diego's Jacobs School, tracks his own biometric data- like the charts displayed behind him. washington post by earnie Grafton

 
By Ariana Eunjung Cha
The Washington Post
Posted5/16/2015 7:35 AM

SAN DIEGO -- From the instant he wakes up each morning, through his workday and into the night, the essence of Larry Smarr is captured by a series of numbers: a resting heart rate of 40 beats per minute, a blood pressure of 130/70, a stress level of 2 percent, 191 pounds, 8,000 steps taken, 15 floors climbed, 8 hours of sleep.

Smarr, an astrophysicist and computer scientist, could be the world's most self-measured man. For nearly 15 years, the professor at the University of California at San Diego has been obsessed with what he describes as the most complicated subject he has ever experimented on: his own body.

 

Smarr keeps track of more than 150 parameters. Some, such as his heartbeat, movement and whether he's sitting, standing or lying down, he measures continuously in real time with a wireless gadget on his belt. Some, such as his weight, he logs daily. Others, such as his blood and the bacteria in his intestines, he tests only about once every month.

Smarr compares the way he treats his body with how people monitor and maintain their cars: "We know exactly how much gas we have, the engine temperature, how fast we are going. What I'm doing is creating a dashboard for my body."

Once, Smarr was most renowned as the head of the research lab where Marc Andreessen developed the Web browser in the early 1990s. Now 66, Smarr is the unlikely hero of a global movement among ordinary people to "quantify" themselves using wearable fitness gadgets, medical equipment, headcams, traditional lab tests and homemade contraptions, all with the goal of finding ways to optimize their bodies and minds to live longer, healthier lives -- and perhaps to discover some important truth about themselves and their purpose in life.

The explosion in extreme tracking is part of a digital revolution in health care led by the tech visionaries who created Apple, Google, BlackBerry, Microsoft and Sun Microsystems. Using the chips, database and algorithms that powered the information revolution of the past few decades, these new billionaires now are attempting to rebuild, regenerate and reprogram the human body.

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In the aggregate data being gathered by millions of personal tracking devices are patterns that may reveal what in the diet, exercise regimen and environment contributes to disease.

Could physical activity patterns be used to not only track individuals' cardiac health but also to inform decisions about where to place a public park and improve walkability? Could trackers find cancer clusters or contaminated waterways? A pilot project in Louisville, for example, uses inhalers with special sensors to pinpoint asthma "hot spots" in the city.

"As we have more and more sophisticated wearables that can continuously measure things ranging from your physical activity to your stress levels to your emotional state, we can begin to cross-correlate and understand how each aspect of our life consciously and unconsciously impacts one another," Vinod Khosla, a co-founder of Sun and investor in mobile health startups, said in an interview.

The idea that data is a turnkey to self-discovery is not new. More than 200 years ago, Benjamin Franklin was tracking 13 personal virtues in a daily journal to develop his moral character. The ubiquity of cheap technology and an attendant plethora of apps now allow a growing number of Americans to track the minutiae of their lives as never before.

                                                                                                                                                                                                                       
 

James Norris, in his 30s and an entrepreneur in Oakland, California, has spent the past 15 years tracking, mapping and analyzing his "firsts" -- from his first kiss to the first time he saw fireworks on the Mall in Washington, D.C.

Laurie Frick, 59, an Austin, Texas, artist, is turning her sleep and movement patterns into colorful visualizations made of laser-cut paper and wood.

And Nicholas Felton, 37, a Brooklyn data scientist, has been publishing an annual report about every Twitter, Facebook, email and text message he sends. More than 30,300 people are following his life on Twitter.

Most extreme are "life loggers," who wear cameras 24/7, jot down every new idea and record their daily activities in exacting detail. Their goal is to create a collection of information that is an extension of their own memories.

Even President Barack Obama is wearing a new Fitbit Surge, which monitors heart rate, sleep and location, on his left wrist, as a March photograph revealed.

Tech firms are eagerly responding to the human penchant for self-perfectability by inventing more devices that can collect even more data, which the tech titans foresee as the real gold mine.

At the 2015 Consumer Electronics Show in January, new gizmos on display included a baby bottle that measures nutritional intake, a band that measures how high you jump and "smart" clothing connected to smoke detectors. Google is working on a smart contact lens that can continuously measure a person's glucose levels in their tears. The Apple Watch has a heart-rate sensor and quantifies when you move, exercise or stand. The company also has filed a patent to upgrade its earbuds to measure blood oxygen and temperature.

In the near future, companies hope to augment those trackers with new ones that will measure from the inside out -- using chips that are ingestible or float in the bloodstream.

Some physicians, academics and ethicists criticize the utility of tracking as prime evidence of the narcissism of the technological age -- and one that raises serious questions about the accuracy and privacy of the health data collected, who owns it and how it should be used. There are also worries about the implications of the proliferation of devices for broader surveillance by the government, such as what happened with cellphone providers and the National Security Agency.

Critics point to the brouhaha in 2011, when some owners of Fitbit exercise sensors noticed that their sexual activity -- including information about the duration of an episode and whether it was "passive, light effort" or "active and vigorous" -- was being publicly shared by default.

They worry that wearables will be used as "black boxes" for a person's body in legal matters. Three years ago, after a San Francisco cyclist struck and killed a 71-year-old pedestrian, prosecutors obtained his data from Strava, a GPS-enabled fitness tracker, to show he had been speeding and blew through several stop signs before the accident. More recently, a Calgary, Canada, law firm is trying to use Fitbit data as evidence of injuries a client sustained in a car crash.

More sophisticated tools in development, such as a smartphone app that analyzes a bipolar person's voice to predict a manic episode and injectables and implants that test the blood, offer greater medical benefit but also pose greater risks.

Des Spence, a general practitioner in the United Kingdom, argues that unnecessary monitoring is creating incredible anxiety among today's "unhealthily health-obsessed" trackers.

"Health and fitness have become the new social currency, spawning a 'worried well' generation," he wrote in an opinion piece in the April issue of BMJ, the former British Medical Journal.

"Getting the data is much easier than making it useful," said Deborah Estrin, a professor of computer science and public health at Cornell University.

Constantly measuring someone's heart rate may be helpful for someone heavily involved in sports or someone at risk of a heart attack. "But it's unclear how important and meaningful it is for the everyday person," she said.

After all, Estrin and other experts argue, Homo sapiens have survived for about 130,000 years without such technology because the human body already has a number of alarm systems built into it. Any mother who has been woken in the wee hours by a crying child knows that a gentle press of the back of the wrist to a forehead is fast, free and eerily accurate in diagnosing a fever.

Until about three years ago, it was nearly impossible for ordinary people to get a readout about the state of their bodies on a regular basis.

Now dozens of biosensing wearable technologies with names such as the Fitbit Surge, Misfit Shine and Jawbone UP have exploited the miniaturization of computer components and the ubiquity of cellphones to create an industry that is expected to reach $50 billion in sales by 2018, according to an estimate by Credit Suisse.

The research firm Gartner forecasts that 68.1 million wearable devices will be shipped this year. A growing percentage are being purchased by employers including Bates College and IBM as perks for their workers. A survey by Nielsen last year indicated that 61 percent of those aware of wearable technology for tracking and monitoring medical conditions use fitness bands.

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The technology is inherently social. Many users share their body metrics with friends, family and even co-workers as readily as they would pictures from their travels to distant countries or their late-night bar adventures.

"When I talk to my parents, they are paranoid about their health data being stolen, but it doesn't bother me," said Halle Tecco, the 31-year-old co-founder and managing director of Rock Health. The digital health incubator in San Francisco is funding a number of next-generation wearables and monitors, such as a software program that assesses Alzheimer's risk by analyzing eye movements with a cellphone camera and a band being tested as a treatment for post-traumatic stress disorder that analyzes skin responses.

Mollie McDowell, 26, marketing manager at Rock Health, openly talks online about how she has had a pain in her right hip for years and has tried several iPhone apps to try to find the cause and to track her mood and menstrual cycle.

"I think there is a lot of insight you can learn about yourself this way," she said in an interview. In late April, she tweeted to the world, "Found out I'm vitamin D deficient."

Daniel Gartenberg, organizer of the Washington, D.C.-based meetups for Quantified Self, an international group of more than 29,000 self-trackers, has written several apps that helped track his own sleep that he has made available to the public. "I had mild insomnia," said the doctoral candidate in applied cognition at George Mason University, "but have hacked it away."

This openness extends to the citizen-scientists' willingness to share information for the greater good. Thirty-four percent of health trackers share their data or notes with someone else, according to a Pew Research Center study.

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In March, when Apple announced its ResearchKit initiative to allow people to share their information with researchers working on projects in asthma, heart disease, diabetes, breast cancer and Parkinson's through various apps, more than 41,000 people volunteered within the first five days.

It's unclear whether young adults' open attitude toward sharing their data will remain when the next generation of more invasive biotrackers becomes commonplace.

Ginger.io, which was developed by data scientists from MIT, has created an app that can alert a provider if something is "off" -- signaling the possibility of depression or a manic episode -- based on how much a patient moves around or how many people they talk to that day so that counseling or other intervention can be offered.

Silicon Valley-based Proteus Digital Health has developed a prototype of an ingestible chip the size of a grain of sand that can be embedded in a pill. When the pill is swallowed, the chip sends a signal that's logged on to central servers that you -- or a loved one or doctor -- can access on your phone or desktop.

The life sciences unit of Google X, the search company's secretive research lab, is working on building a nano-size particle that will travel in the bloodstream. The particles would circulate throughout the body and attach to particular types of cells, such as cancer cells, or to enzymes given off by plaque in the arteries before they are about to rupture or cause a heart attack or stroke. If the particles found questionable cells or enzymes, they would send a signal to a device worn outside the body that would transmit the information to the patient or to a physician.

The innovation is outpacing the scientific and legal framework for testing and regulating such devices. The Food and Drug Administration in January indicated it would regulate devices that are invasive but take a lighter touch on wearables.

According to the agency's draft guidelines, a wellness product crosses into the territory of a medical device, which requires a rigorous FDA review that is expensive for manufacturers, when its intended use refers to a specific disease or condition, or it presents an inherent risk to a user's safety. That would essentially leave hundreds, if not thousands, of "low-risk general wellness" products -- a category that presumably applies to the current incarnation of Fitbits -- free from extra scrutiny under federal food and drug safety laws.

They would still be subject to monitoring by the Consumer Product Safety Commission, which has the power to recall products to protect the public against unreasonable risks from injuries or death from consumer products. In 2014, after thousands of users complained of skin irritations from Fitbit bands, the CPSC worked with the company on a recall that affected more than 1 million devices.

How the data that is generated from the devices is protected and shared is also murky.

Federal patient privacy rules under the Health Insurance Portability and Accountability Act don't apply to most of the information the gadgets are tracking. Unless the data is being used by a physician to treat a patient, the companies that help track a person's information aren't bound by the same confidentiality, notification and security requirements as a doctor's office or hospital. That means the data could theoretically be made available for sale to marketers, released under subpoena in legal cases with fewer constraints -- and eventually worth billions to private companies who might not make the huge data sets free and open to publicly funded researchers.

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The data of a life

Larry Smarr's journey into the data of his life began when he moved to California in 2000.

"I had spent 28 years in the heartland of the obesity epidemic in Illinois. I had gained a lot of weight and wasn't exercising. I got to La Jolla and looked around and said, 'Oh, my God, if I don't get with the program, they are going to send me back,' " he recalled.

Smarr came to California as a computer science professor to head a $400 million multidisciplinary research institute for the University of California that has been called the West Coast equivalent of MIT's famous Media Lab. Composed of scientists, artists and technologists, Calit2 (or the California Institute for Telecommunications and Information Technology) aims to rapidly develop prototypes of technological innovations and test them in the real world.

Embracing the institute's multidisciplinary philosophy, Smarr took a scientist's approach to investigating himself. Although he had no previous experience in medicine, nutrition or biochemistry, he trained himself, he said, by reading more than 600 journal articles on monitoring and health.

He measured his way to lifestyle change: No coffee after 10 a.m., because he tested how long the effects lasted after his last drop; 40 minutes on the elliptical, because that was how long it took for him to reach his optimal heart rate; new vitamin supplements every few months, as dictated by his evaluation of his blood work.

"We are in a once-a-century period of discovery about the human organism," Smarr said. Quoting science-fiction author William Gibson, he said "the future is already here -- it's just not very evenly distributed."

Smarr's mantra is that these devices and tests will help people take personal responsibility for their own health. And an increasing body of behavioral medical research has found that patients who track their diet, physical activity and weight achieve better results than those who don't, suggesting that wearable monitors provide feedback that reinforces personal accountability.

"The mythology in this country is you can do whatever you want to your body, and a doctor will give you a pill to fix it. That needs to change," Smarr said.

Few people may be willing to go as far as Smarr.

In 2009, when blood tests showed he was secreting excessive amounts of something called C-reactive protein, a substance found in blood plasma that is a marker of inflammation, he took the results to his internist: "There's something terrible going on." The doctor asked how he felt. "Fine," said Smarr, and so the doctor laughed and sent him home, he recalled.

"This is when I began to realize there is a disconnect between science and medicine," said Smarr, who countered by writing down how he was feeling in a diary. "I realized I could data-mine this information," he said, on a spreadsheet with a scale for the severity of issue. He was surprised at all the things he had dismissed as minor: blurriness and stinging in his eyes for a short while -- "like you touched jalape� o," arthritis, swelling in his belly. The record-keeping didn't yield a diagnosis, so in 2011 he decided to try to identify the organisms in several months of stool samples. With more than 90 percent of the cells in the human body made up of other organisms, the idea of keeping one's "microbiome" healthy was just taking off; Smarr was curious about how that applied to him.

"You are an ecology, and the health of those bugs determine how you are," he said.

He looked at all his data and had a eureka moment: He had Crohn's, an inflammatory bowel disease.

Last year, Smarr ventured farther in his quest for self-discovery. He got an MRI of his abdomen and used a 3-D printer to create a model of his own colon. But that didn't lead to any new insights, and the model is now a paperweight on his desk.

One weekday afternoon in his lab, Smarr studied his life on an 18-by-8-foot monitor that spans most of the room. On the board were 150 key variables about his body over a 10-year period, displayed in colored rectangles. Most were green, meaning they fall within the expected, healthy range. But some were yellow (one to 10 times outside the healthy range), and a handful were red (10 to 100 times outside the healthy range).

According to the custom-built "future patient" program built by coders at the research center Smarr oversees, the scientist's body was still in attack mode for some reason.

It has been nearly three years since Smarr discovered the issue, and he's tens of thousands of metrics down the road, but he has yet to find a way to treat it. "People overestimate what knowledge can do for you," he said with a shrug.

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