Opinion: How self-tracking biometrics influence patients, medicine and society

For many, self-monitoring is becoming a new philosophy for life, argues digital health journalist and blogger Artur Olesch.
By Artur Olesch
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As a consequence of digitalisation, data acquisition related to different aspects of our daily life has become widely available. Monitoring of heart condition, mood or air quality is no longer the domain of specialised laboratories or hospitals, it can be done anytime, anywhere and by anybody. Self-knowledge and self-perception through numbers replace subjective narration based on frame of mind or intuition. Quantified-self phenomena not only revolutionise healthcare, but also promise to boost wellbeing. How will life change in a world where everything becomes measurable?

KNOWING INSTEAD OF GUESSING

Wearables give an objective insight into people’s behaviour, physical and mental condition, sport performance, and environmental factors. The trend towards self-tracking through technology is also called the quantified-self, body hacking, self-quantifying or lifelogging. What began a few years ago as a community of users and makers of self-tracking tools, today is a fast expanding global market and trend. According to a new report from IDC, the wearables market in 2018 grew by 27.5%, with 172.2 million devices shipped.

Smartwatches account for 29.8% of all wearables, and are evolving quickly beyond the simple measurement of heart rate or steps. Built-in algorithms monitor blood oxygen levels, calories burnt and sleep quality. Last year, Apple presented a breakthrough innovation – its Watch Series 4 with ECG had been cleared by the FDA. From that moment on, heart health monitoring in real time became as easy as checking body temperature. With this new feature, the smart watch became a medical device to detect irregular health rhythms. In a broader meaning, medicine started to move away from the hospital to the home.

"If You Can't Measure It, You Can't Improve It." What management thinker Peter Drucker stated about success in business is also valid for health: if you want to shift from guessing to knowing, you need to quantify the health determinants, track them and, if necessary, make appropriate changes in lifestyle. However, this is not a new idea, the first practical application of the quantified self in healthcare was a pedometer, envisioned for the first time by Leonardo da Vinci for military applications, designed and first produced in the mid-1960s by a Japanese company, Yamasa, and marketed in the 1980s. A device known as manpo-kei, which translates to “10,000-step meter”, established the 10,000-steps-a-day goal as the gold standard for physical activity, which remains in use today, despite being controversial.

For many, self-monitoring is becoming a new philosophy for life: tech companies and innovators promise a healthier, longer and better life, with rationalisation and control of every aspect of life instead of uncertainty. Silicon Valley startups are racing to create a new “medical Tricorder”, a universal, portable scanning device for self-diagnosis within a few seconds. Body hacking includes consumer genomics, DNA-sequencing to define ancestry, and understanding the metabolism or genetic health risks.

From the patient's perspective, wearables are not just gadgets but tools that offer real help. Aron Anderson, who after surviving cancer surgery at the age of eight, was confronted with spending the rest of his life in a wheelchair. Although medicine was able to cure him, it did not make him healthy. Wearables helped him to regain some control over his own health: "I believe that self-tracking and quantifying is a great tool that has the potential to change a lot of people’s lives in the future,” says Aron. Over the last few years he has been doing a lot of self-experimentation and tracking, and the most useful metrics that he has been able to track are HRV (heart rate variability), DNA-testing and bio-feedback meditation.

“I've been able to make these measurements and to get meaningful data from them, because I did a lot of reading to truly understand what values to look for,” emphasises Anderson, who will be speaking at the HIMSS and Health 2.0 European conference in Helsinki this June. “When I visit doctors, they might only look at my latest blood test results, for example. Imagine how much more accurate the diagnosis could be if the laboratory tests were combined with my own data. How helpful would it be if my doctor could monitor the data I collected and send me an alert when the results were abnormal? Then I could come in for further examinations. That could potentially save both of us a lot of time and money!”

DATA AROUND

There are dozens of digital health devices that help people to gather data and track their biometrics. Smart watches, smart badges and smart jewellery can track steps, heart rate, distance, calories burned, floors climbed, mood, female health, hydration status, blood oxygen level, temperature and, recently, ECG as well. Smart devices check the quality of air at home or in the local environment, spot allergens in the food, and count calorie intake. Sensors located in the bed check the length and number of REM-cycles to specify the quality of sleep, translated into a sleep score. Headbands with built-in EEG detect the activity of the brain to assess the stress level and to aid in relaxing. Gyroscopes and accelerometers in smart badges measure physical activity and sport performance.

Almost every smartphone operating system has a built-in app to make basic measurements in the background of our daily life (HealthKit for iOS and Google Fit for Android). The most popular applications for wearables are being expanded due to advances in algorithms and big data analysis. Soon voice tracking may tell us a lot about our mental state, enabling the early detection of depression. When combined with voice assistants like Amazon Alexa or Google Home, radically new possibilities of body and mind hacking will influence and improve early prevention.

Sensors are becoming a constant presence in our daily lives – at home, in the car, in bed and in the kitchen, and soon will gather gigabytes of data to create a complete picture of our wellbeing. Smart devices track us in public and private spaces, even in the toilet: a team from Rochester Institute of Technology created a toilet-seat based cardiovascular monitoring system that detects congestive heart failure. The successors to wearables (that can track people’s data and behaviour only when within reach of the body or voice) are entering the market: skin electronics (like smart tattoos) and injectable or implantable mini-sensors.

CONTROL AND IMPROVEMENT AT THE COST OF PRIVACY

John Nosta, author and digital health futurist, sees some complexities around this issue. He says this leads to a problem, and that's the word "self": “Many people – from physicians to consumers – tend to see this word as the person doing the qualification. And while this might be true in many instances, the quantified self is less about self-directed measurement and analysis, and more about directing analytics around a specific person. In the final analysis, the quantified self will help establish and drive personalised medicine.”

Digital technologies are changing the way that people manage their own health. Quantification of our health improves early detection of illnesses, empowering us to become responsible patients instead of passive healthcare service receivers. Finally, through better monitoring, personalised prevention and mobilising of patients to be in charge of their health, there is hope that we can tackle one of the biggest challenges in healthcare – an emerging epidemic of non-communicable diseases (NCDs). According to WHO, NCDs kill 41 million people each year, equivalent to 71% of all deaths globally.

However, digital health technology, including wearables, is not a silver bullet. It generates opportunities, but also new challenges and threats.

“In some instances, the movement has be one of obstructions and complications. From cost to clinical utility, the quantified-self movement has taken a path with several significant (and valuable) outcomes. In essence, it has arrived as an option verses an imperative. From a clinical perspective, care providers see much "consumer data” as unnecessary and as something that adds ambiguity and complexity to an already difficult process.

"Things like consumer genomics, heart rate variability, gut flora are still very much part of the "noise" of new found technology,” comments Nosta. For the founder of NOSTALAB, the digital health movement is impacting medicine in important and positive ways. From driving a more proactive consumer posture around wellness to early disease detection and prevention, the quantified-self is establishing a "new normal" in care. Additionally, the shift away from traditional brick and mortar clinical settings to telemedicine and digital health tools is beginning to establish powerful cost-savings.

The issue of body hacking also raises many privacy and ethical concerns. The lack of regulation means that the market of smart devices and apps with healthcare applications is booming. Many of them do not meet the data safety standards or guarantee the accuracy of the measurements, while some are not based on any evidence. What’s more, the simple gathering and possession of data still does not help. Even when transferred to electronic health accounts (EHRs), data on physical activity or heart rate is often ignored by physicians, and lacks broader application.

In this way many data sets remain unexploited. There are many more unanswered questions, like who else should see the data (third party health insurers, for example) or who should make decisions based on the data. Can patients follow the independently fragmentary findings and numbers to correct their behaviour? What impact on patients has a culture of constant biometric measurements, comparing results with one another and even competing in physical activity and performance? And finally, how much will privacy cost us in better understanding of our health?

Measurement of health leads to a deeper understanding of individual biometrics and the personalisation of prevention and therapies. Nevertheless, the end of what I could call “narrative-health” is the beginning of examining patients exclusively through data, rather than through their personal needs, worries, expectations or stories. What was expressed by words before the digital revolution, described using emotions, is now scored without taking into account the non-measurable factors.

The question “how do you feel” is being replaced by “what are the results”. Is the momentum created when we let algorithms quantify our state of health or mood the beginning of the dehumanisation of medicine? Will a holistic approach be outdated in an era of mathematical approaches to health and the body? Where is the border between a “patient interpreted as a body and a data repository” and a “patient perceived as a human being”?   

Finally, the market offers an enormous number of different wearables. The vast majority are not reimbursable by health insurers, so they are only available to a limited group of people, mostly digital natives with a higher economic status. The threat of unequal distribution of innovations is real and could potentially cause a new digital divide. Paradoxically, the measurement of life signs is becoming available not for those who really need it, but for those who can afford it. This is against the paradigm of solid, accessible for all and fair healthcare.

Artur Olesch is a digital health journalist and blogger. The HIMSS & Health 2.0 European conference will take place in Helsinki, Finland between 11-13 June. MobiHealthNews is a HIMSS Media publication.