“Quantified self” is an increasingly successful movement that involves using wearable sensors to collect personal data. The medical world needs to stay one step ahead of this practice in order to avoid confrontations with patients.
Nov 12, 2014
Self-measurement fanatics will soon have a haven where they can track all the data on themselves captured by various applications in real time, such as their pulse, distance covered or the number of burritos eaten. The website dubbed Gyroscope was developed by the American designer Anand Sharma. Frustrated at not being able to centralise his personal metrics, Sharma created his own online dashboard called April Zero. Its success has encouraged him to develop a platform that everyone can use.
Do you have any idea of how many steps you take every day? Are you familiar with your heart rate? Could you say how long it takes for you to fall asleep every night? Would you be able to specify the amount of CO2 present in the air in your home? Probably not. Or at least, not unless you are one of a growing number of people following the quantified self movement.
The idea is to collect data about yourself or your environment using wearable sensors or mobile apps. The term “quantified self” was coined in 2007 by Gary Wolf and Kevin Kelly, editors of “Wired magazine”, who created the site of the same name. Formerly reserved for sportspeople, diabetics or people who needed to monitor their blood pressure, the quantified self movement has become more democratic in recent years with the miniaturisation of electronic chips and the wider availability of intelligent devices such as smartphones.
Popular devices include web-enabled scales to measure body weight index or body fat, step counter bracelets with accelerometers, and other activity trackers. Backed up by a variety of apps, this equipment is all the range. And with models made by manufacturers such as Nike and Jawbone, devices are becoming increasingly affordable. “Demand for wearable technologies is growing strongly,” confirms Christian Neuhaus, spokesperson for
operator Swisscom, which markets this type of product in its range.
Organised as a network, the quantified self movement has around one hundred user communities worldwide. Two groups were set up in Switzerland, last year, in Zurich and Geneva, with a total of 150 members. They discuss the latest innovations and share tips and personal experience, online or at meetings.
Organised as a network, the quantified self movement has around one hundred user communities worldwide.
“Users might be motivated by health issues. They may be seeking to boost their performance levels. Or they might have precise targets in mind, such as watching less television,” explains Emmanuel Gadenne, author of the book “Guide pratique du Quantified Self” (2012) and head of the Parisian branch of the movement. Some users even order blood tests or a DNA analysis to guard against and identify possible illnesses (read the article on genetic testing on p. 42).
Emmanuel Gadenne joined the quantified self movement in 2003, “to achieve a better life balance”. He emphasises the value of self-coaching developed by the quantified self movement. “I’ve started wearing a Fitbit bracelet to prove to myself that I can walk 2,500 km a year. If I took it off, I know that I’d drop back to between 1,000 and 1,500 km.” This approach also helps him to keep a record of his activities: “My doctor has no idea of how my weight or cholesterol levels have changed over the past twenty years. But with quantified self technology, you can easily store any item of data for an indefinite period and pass it on to your specialist.”
In sport too, the quantified self movement has developed widely in recent years. “Amateur sportspeople are making greater use of instruments to analyse their performance, just like the professionals,” says Gérald Gremion, head doctor at the Swiss Olympic Medical Center and assistant
physician with the musculo-skeletal unit at the Lausanne University Hospital (CHUV). “They don’t want to leave things to chance.”
However, self tracking can go too far. Georges Conne, a GP working in Bussigny-près-Lausanne, believes that this practice could give rise to unnecessary anxiety. He set out his fears in a column published recently in the Revue médicale suisse. “Unless people are suffering from a chronic illness requiring constant monitoring, such as diabetes, the practice of continuous tracking tends to increase patient anxiety,” he said. “Users collect personal data and then compare it to a standard. Anything above or below the standard is considered to be pathological. But who sets the standard? This is where medical advice is necessary to provide a filter.”
Dr Conne’s views are shared by Lilli Herzig, head of research at the Institut universitaire de médecine générale within the CHUV. She believes that the limit between intelligent and pathological use of quantified self data is fuzzy, and needs to be defined on a case-by-case basis. “Recently, we’ve seen patients arriving with their own diagnosis. That’s fine if it provides a basis for discussion with the doctor. If the data are of good quality, there’s no reason not to take them into consideration. However, the dialogue is sometimes difficult with patients who want to control the whole process. That’s when we need to check for an underlying psychiatric problem.”
For Emmanuel Gadenne, measurements must always reflect set aims. “The self-coaching process isn’t for everybody. In my case, for example, I have no need to measure my blood glucose levels. You need to set yourself three or four targets, for example, to stop smoking. And then, it’s important to discuss the results you’re aiming for with your doctor.”
Taking the process to the extreme, some quantified self enthusiasts believe that they can do without a doctor, in the hope that one day they will be able to have their data analysed through algorithms. One example is American Chris Dancy (see interview opposite). Lilli Herzig takes a sceptical view of this futuristic vision: “We already have IT tools that can analyse these data to help us make a diagnosis. But their use is limited since they can only search for one illness at a time. In reality, you often have several health problems together, which makes things more complicated. Patients aren’t robots.” ⁄
American Chris Dancy has made a name for himself in the US by taking the quantified self trend to the extreme. He collects vast amounts of data, on his personal health in particular. Before 4:00 pm, Chris Dancy sets the lights in his home to “study” mode, the temperature to 21.6°C and humidity to 31%. And he avoids listening to music with more than 71 beats per minute. Dancy, a 44-year old digital technology consultant established these rules—and many others—on the basis of the extensive data he has collected about himself over the past five years. He answered InVivo’s questions from his home in Denver.
IV US media describe you as the “world’s most quantified man”. What do you aim to quantify exactly
Chris Dancy I use between 300 and 400 different systems to collect measurements covering ten categories: health, leisure, domestic environment, social network, work, travel, opinions, content creation, money and spirituality. I wear around half a dozen sensors alternately to measure my heart beat, skin temperature and sleep patterns. My kitchen and toilets are also equipped with detectors, and the lights are connected to the wireless network in order to record their brightness.
IV What is your purpose in doing this?
CD Five years ago, I started to save my social networking activity to keep a record of everything I posted and measure its impact. Then I started collecting data on my body to improve my health. That’s when I realised that it’s not only the obvious factors such as food or how much sleep you get that have consequences for your health. In reality, your health is correlated to nine other categories that I also quantify. For example, I found that some television programmes have a negative impact on my sleep.
IV Do you share your data with your doctor?
CD I only go to see him to keep him company (laughter). I’m not sure of his ability to monitor my health and process my data. So I monitor myself as much as I can using medical information websites such as WebMD. With tools such as Watson supercomputer, patients will be able to accumulate knowledge in the same way as doctors.
IV Are you in good health?
CD Yes. And I’ve lost around 60 pounds (around 27 kilos) since I started quantifying myself.
IV Are you worried about protecting your data?
CD Not really. There’s always a danger of this information getting into the wrong hands. At least by quantifying myself, I know what the government can find out about me.
IV Does this continuous monitoring curtail your freedom?
CD Today, most of our actions are determined by our environment. When you go shopping, the shelves are not laid out at random. Your buying journey is based on precise criteria that aim to guide consumers without them realising it. Quantifying yourself means that you don’t get manipulated. ⁄
Wrap the Withings Blood Pressure Monitor – compatible with iPhones and iPads – around your arm to visualise your blood pressure. The data recorded on your phone can be used to monitor your health.
Garmin sport watches measure your running progress by recording run times, distance, speed, heart rate and GPS position.
Rubber bracelets such as the Fitbit Flex record your steps, calories burned, distances covered and minutes of activity, as well as how much and how well you sleep.
Compatible with a range of smartphone and smartwatch apps, the Polar WearLink+ chest strap measures your heart rate.
Fit on your finger, the Withings Pulse tracks your pulse rate. On your belt or in your pocket, it measures your steps and distance.
Some scales, including the Smart Body Analyzer WS-50 by Withings, measure not just your weight but your body mass index, fat-lean ratio, heart rate, and even the quality of the surrounding air.