By Philip Bethge
Larry Smarr’s large intestine appears to float in the middle of the room, nestled like a stuffed sausage between his other virtual organs.
Smarr, a computer science professor, adjusts the dark-tinted 3D glasses perched on his nose and picks up an electronic pointer. “And this is where the wall of my colon is inflamed,” he says, pointing out a spot where the intestinal walls are indeed noticeably swollen.
A supercomputer combined MRI images of the 63-year-old professor to create the three-dimensional illusion now projected on the wall. It gives the impression that the viewer could go for a stroll inside the researcher’s abdomen.
“Wouldn’t it be wonderful if everybody could look inside their own bodies like that?” asks Smarr, director of the California Institute for Telecommunication and Information Technology (Calit2) in La Jolla, near San Diego. Smarr is a proponent of a new kind of medical science driven by data, known as “self-quantification,” which he sees as the key to a revolution in healthcare and the path to a healthier, more self-determined life. “It is absurd that we collect data about everything but our health,” Smarr argues. “For thousands of years, the question you are asked by your doctor has been, ‘how do you feel?’ It is being replaced by, ‘what are your data trends?'”
Smarr is at the academic vanguard of a growing number of tech geeks, fitness fanatics and chronically ill patients who monitor their own bodily functions to an extent previously thought impossible. With the help of sophisticated smartphone apps and fitness equipment, these self-trackers collect data on their heart rates, exercise patterns, sleep rhythms and diet habits.
Start-up companies in California such as Fitbit, Zeo and Basis provide this new target group with the measuring devices that self-trackers affix to their bodies or strap around their heads, arms, chests or abdomens. The newest of these gadgets are wireless, and offer a glimpse into a future in which even complex medical monitoring equipment will shrink down to miniature format.
Some 7,500 Self-Trackers
At the forefront of this movement is Quantified Self, a website attracting members from around the world. It has branches in about 50 cities and a core group of dedicated self-trackers estimated at around 7,500 people. Quantified Self’s motto is “self-knowledge through numbers” and its members are united in a belief that thorough data analysis and statistics can optimize the way we live.
Self-trackers meet in online forums and at conferences to discuss their experiences: Does eating more pineapples reduce my allergies? Does regular consumption of butter make me more intelligent? Do I fall asleep more easily if I wear orange-colored glasses just beforehand?
No detail is too personal, trivial or bizarre, and each new discovery is welcomed as a victory over established medical science. Body weight and blood pressure, calorie counts and mealtimes, heart rates, menstrual cycles and medication — self-trackers believe our entire lives could soon be entered into the Internet’s data clouds.
“The more people do this, the more radically the context of healthcare changes,” says Gary Wolf, one of the movement’s spokespeople. “I find that the most interesting tools are those that give us the chance to reflect on who we are.”
Wolf, a wiry Californian, regularly records around 20 of his own vital signs, and successfully applied this self-analysis to bringing his high blood pressure under control. In the future, Wolf suggests, self-tracking will no longer be primarily about treating illnesses, but instead will focus on maintaining health and increasing our enjoyment of life. “It is a trial that begins with one very important person: yourself,” he says.
Self-trackers recently gathered at Stanford University, in California, for a seminar titled “The Uploaded Life: Personal evaluation through self tracking.” Over snacks and cold drinks, participants could also test out the latest measuring devices.
Nancy Dougherty from a company called Proteus Biomedical, for example, presented a system with which patients can monitor the medication they take: A tiny chip embedded in each pill sends a signal as soon as the drug reaches the stomach. A sensor attached to the body receives that signal and also measures the heart’s rate and activity, then wirelessly relays the data to the Internet via a smartphone.
Entering Self-Tracking Data Into Social Networks
“The data can then be called up online by family members or doctors, for example,” explained Dougherty, who casually lifted her T-shirt during her presentation to show a sensor attached to her chest.
Charles Wang from the company Lumoback had a sensor strapped to his lower back that monitors posture, and if Wang starts to slump in his office chair, a vibration instantly warns him to sit up straight.
In the crowded auditorium, meanwhile, self-trackers were exchanging suggestions on how to enter this flood of data into social networks, since they believe the revolutionary power of self-tracking is most effective when everyone pools their data. Already, thousands of Internet users meet on Internet portals such as PatientsLikeMe and CureTogether, where they discuss their data, symptoms and treatment methods.
To those concerned with protecting data privacy, this may sound like their worst nightmare, but the system is in fact starting to bear fruit. In one example, data collected by patients revealed that a certain drug vastly increased the likelihood of migraine patients experiencing bouts of dizziness.
Recent developments even make it possible for smartphones to identify mood fluctuations. Researchers discovered they could determine a subject’s state of mind by monitoring speech rhythms while the person talked on the telephone. If the speaker were in danger of falling into depression, for example, an app could arrange an appointment with a psychiatrist long before the patient would have thought to do so.
“The human is a very flawed measuring instrument,” says Calit2 researcher Smarr. “Technical sensors are far more objective. They can detect deviations from norms far more easily and reveal early signals of disease development.”
Smarr himself is just the person to promote this vision of digital medicine. The professor is considered an interdisciplinary genius, an astrophysicist who studied black holes and gravitational waves before turning his attention to pioneering work with supercomputers and the structure of the Internet. The founder of Calit2 in San Diego is now interested in anticipating the technology trends of the future. In the process, he has become obsessed with self-tracking.
“When I got to California, I weighed over 200 pounds,” he says, pulling a photo from that period out of his wallet. “In contrast, people in La Jolla were in great shape.”
Measuring Brain Activity At Night
Smarr decided to make himself his own test subject. He placed himself under the authority of a fitness trainer and started constantly recording his bodily functions. A band on his arm told him his daily calorie consumption, how many steps he took and his heart rate. He soon added a Zeo headband that records his sleep stages by measuring his brain activity at night. Users of the product who make their EEG data available online can receive tips from sleep researchers on how to get a better night’s sleep.
Smarr also keeps track of his diet and to this day uses his cell phone to photograph nearly every meal he eats. An app then estimates from the picture the number of calories in the meal.
“After a while, I had doubled my strength; my weight was down to 180 pounds,” he says. “Then I got thinking, well, this is pretty cool. I wonder what else I might find if I analyze my blood.”
Smarr began sending monthly blood samples to a company in Florida called Your Future Health, then regular stool samples as well. “Before long, I was measuring 100 different things,” he says. “The first five years, I just got healthier.”
He even discovered a chronic illness that had so far gone undiagnosed. Inflammatory markers present in Smarr’s blood worried him, so he had parts of his genome sequenced and discovered a predisposition toward inflammation. As a next step, he had a colonoscopy.
“I discovered that I had Crohn’s disease, an inflammation of the bowel,” he explains. “Six inches of my colon are inflamed; without my measurements I wouldn’t know. But now I can do something about it before the illness causes serious symptoms.”
An Extreme Form of Hypochondria?
Is this how the future of medicine will look? Will it soon be normal for patients to monitor themselves, get early warning of illnesses and take preventative measures? Or is self-tracking nothing more than an extreme form of hypochondria?
Smarr, for one, has made his entire medical history available online. It serves as something of a manifesto for the self-tracking movement. Eric Topol, a cardiologist and the director of the Scripps Translational Science Institute, in La Jolla, says it is just a matter of time before these technologies come into wider use. He believes that in the future patients will know far more about themselves than their doctors do, “which is a good thing,” he adds.
Topol is enthusiastic about the idea of a partnership between doctors and patients, in which the doctor takes more of an advisory and interpretive role. A few insurance companies have already indicated interest in this model as well.
“We have one trillion dollars of self-inflicted disease extra in the healthcare budget because of no exercise, smoking and eating too much,” says Rick Lee from Healthrageous, a company that advises a large number of insurance companies. As one step toward changing this situation, Healthrageous runs an Internet platform where self-trackers can upload their data, and in exchange receive comprehensive health counseling.
Lee even proposes in all seriousness that in the future, insured individuals who don’t measure their vital signs and who ignore health tips should pay higher insurance premiums. “There is a lot of compatibility to the automobile market; the more accidents you have, the higher your premiums go,” he points out.
Diet, fitness routines, amount of sleep — nothing would remain secret from insurance companies anymore. Yet proponents of self-tracking aren’t scared by this horror scenario. Smarr believes that in the not-so-distant future, we will all have nanosensors inside our bodies, for example ones that would constantly monitor levels in the blood and automatically sound an alarm if the results deviated from the norm. “In a couple of years time, we won’t even notice our body-sensors anymore,” the researcher predicts.
Smarr himself doesn’t even want to imagine a life without these gadgets. “I regard the little gadgets as my friends, as good angels,” he says. “They help me overcome my bad angels in times when I should exercise a bit more.”
Translated From the German by Ella Ornstein