Health Totalitarianism

“1984”, a dystopian vision of the future created 70 years ago by George Orwell, shapes our fear of a world where every aspect of life is precisely controlled. How real is this threatening scenario in the age of AI, Big Data, and the Internet of Things? And how does this dystopian vision of the future, driven by 20th- and 21st-century literature and movies, slow us from benefiting from digital healthcare?

Measure to gain power

Orwell’s omnipresent eyes of “the Party” control what people say, think, read, and how they live. The ruler manipulates society, deciding what is allowed and what not. There is no escape from the “Big Brother” dictatorship. Even thinking about “forbidden” is a form of rebellion. The protagonist of “1984”, Winston Smith, commits the crime of keeping a secret diary of his thoughts. Together with his girlfriend, Julia, they start to fight against the oppression that no one else seems to notice.

The world where we are heading can outdo the dystopia of which George Orwell warned. However, instead of one enemy that is visible, defined, and tangible, there will be many of them. Smart spies are embedded in the things at home and in public spaces. CCTV (Closed Circuit Television), sensors, wearables, and smartphones are all continuously collecting data, which is then processed by tech companies and governments. As a result, trained algorithms can recognize our faces, tracking where we are, how we feel, and what we are doing. In healthcare settings, they can also monitor the behavior and, through mobile applications, modify it to improve our overall well-being, longevity, and happiness.

Step by step, as a society, we give away small parts of our freedom – everything for a better, healthier life. There is nothing wrong about prevention and behavior change programs because there is nothing as precious as our health and the health of the ones we love. Unfortunately, some tech companies progressively abuse this fundamental need that is placed at the top of Maslow’s pyramid. Technology has become a new form of religion, and the promise of a longer and healthier life is a new kind of salvation for those who believe. Data creates power, with tech companies becoming small countries organized in a non-transparent way. It is enough to mention Facebook and the Cambridge Analytica data misuse in 2018.

Digitalization raises hopes of personalized prevention adjusted to our needs, habits, and the environment. According to a Research2Guidance report, there are already more than 318 000 mobile health apps on the market. They motivate us to do more sport, eat better, and lead a healthier lifestyle. Today nobody forces us to use them; we can still switch off a fitness app or wearable. But what if smart devices begin to support our healthy lifestyle so that we are not even aware of it? What if Alexa makes comments when we order some sweets online? Is this still health prevention or manipulation? Is China’s social credit system violating human rights, or does social security justify such interventions?

A brave new world

The year is 2049. After the profound healthcare crises of the twenties, the government decides to speed up the digitalization process. It is clear that the current approaches are outdated and the healthcare budget – cut drastically due to the massive costs of the anti-climate change program – can no longer handle the rising expenditures driven by non-communicable diseases and challenges related to aging societies. People expect radical changes. The brave new public health strategy assumes the use of the individuals’ data collected from electronic health records, wearables, and smart devices to introduce an innovative preventive platform. The goal is to manage the personal determinants of health and to correct behavior if it threatens our health and well-being. The system calculates individually the health insurance policy and updates it regularly according to the individual’s data. It means that smokers pay 20% more than non-smokers, for example. All patients have access to their own health data and their health scores. Good behavior is rewarded, while bad is punished. Obese people have to avoid high-saturated fats. Those with liver disease have a ban on buying alcohol. Several hours of watching TV on the sofa can lower the health score drastically. Doctors are allowed to prescribe physical activity just as they would medicines. Smart devices are everywhere: smart beds measure the length of sleep, smart fridges analyze food, smart mirrors give a daily health check-up, and smart bands monitor physical activity. The cameras and microphones in smartphones control mental health. If the algorithms detect worrying patterns, the system makes an appointment with a doctor automatically. People diagnosed with specific diseases have to follow strict health plans. If they decide to switch off some devices, which is still possible, their health scores decrease. Since sugar consumption has been ranked as one of the most significant health risk factors, besides cigarettes and alcohol, new health guidelines have become very restrictive. Now the system decides and tells everybody what to do and what to eat. Some try to cheat the sensors to enjoy the food they love, a night out without sleep or to hide a worse mood.

Algorithms. The new super-doctors

Although this future vision of healthcare based on data analysis and artificial intelligence might be completely wrong, it is not unrealistic at all. Already today, some systems like this exist on a smaller scale. For example, dacadoo measures health with the Health Score (1 is the lowest, 1000 – the highest).  The app can serve the needs of individuals, but to health insurers and companies, it is a “wellness engagement solution.” The method can be somewhat inaccurate because the complete data set is never available for the individual, but this may change soon since relevant emerging technologies are developing at enormous speed. The Internet of Things market is predicted to reach $520B by 2021, more than double spent before 2021. According to the IDC report, 172.2M wearable devices have been shipped, while Global Market Insights predicts that the digital health market is set to exceed $379B by 2024.

Some may argue that people living in democratic countries will not allow such a “control system” to be created. The truth is that we have always agreed for decisions to be made for us when it comes to health issues. The reason was invariably the same one: only doctors and medical researchers had sufficient knowledge, the key to better health. But this age-old principle was also fuel for paternalistic medicine, one that blocked access to information by patients – a system set to end in the era of digitalization. Medical science, which is not the same as medical knowledge, has become available for all. Doctors have lost their monopoly on know-how: the democratization of healthcare has come. Although this revolution leads to empowerment for patients, there is a small trap that has been overseen by many. Algorithms are gaining knowledge on an unprecedented scale.

The new era of “AI paternalism” is already arriving. If the precision of AI-driven disease prevention systems continues to rise successfully, people will accept its authority. We may find ourselves gradually sliding into the scenario described above. Such a screenplay may be justified in many ways. Behavioral risk factors, like smoking, drinking too much alcohol, nutritional choices, and physical activity, determine about 50% of our health in practice. Only 10% of the population’s health and wellbeing is linked to healthcare and quality medical services. In other words, people are in charge of their health. Unfortunately, behavior change is a complicated process, which must involve individual motivational and environmental factors. So we all neglect our health, destroy it intentionally or unintentionally, and then require our health systems to repair it at any cost. For example, low medication adherence leads to poor clinical outcomes and costly drug-related side effects. If traditional preventive measures and health promotion campaigns fail, perhaps it is time to demand more responsibility and engagement by introducing the Health Score System? Or even to enforce healthy attitudes?

In this place, I have to say clearly: digitalization is neither demonic nor a blessing per se. However, it is never neutral. Like a two-edged sword, while it may harm it may also bring new opportunities, to improve the quality of care and access to medical services, reduce health inequalities, and lower the burden of non-communicable and infectious diseases. It can help us in fighting the epidemic of mental disorders as well as malaria in Africa. Algorithms speed up research and the development of new medicines. The IBM Watson supercomputer can analyze millions of patient records, scientific papers, and follow the latest research to improve the outcomes of cancer patients. Algorithms examine medical images, pixel by pixel, to find even the smallest anomalies. No human eye can do the same. AI systems are becoming super-doctors based on the knowledge that no human being can ever obtain. This marvelous power of AI gives hope for millions who suffer from thousands of diseases, as well as those who want to live a long and healthy life.

Going back: If health is the highest value for every human being, then they are also ready to pay for it through the loss of privacy or freedom. They are much less more critical here, and only those who are sick can understand that, in the fight for their own life and health, a better outcome excuses any wrongs committed to attain it. And there is nothing wrong about this; we are all human.

AI vs. doctors, doctors vs. AI

Nonetheless, the fear of a world dominated by harmful technologies is rooted in societies. Literature also teaches us that technological progress might still threaten humanity. Data security issues or ethical doubts often stop or delay many promising digitalization projects, especially in Europe.

“Repercussions of and intertextual references to Orwell’s 1984 are visible in fiction on both sides of the Atlantic and, in the world of smart homes and digital assistants, seem as relevant as ever. The plots usually feature a dystopian environment that seems to be only a few steps away from reality. That way the totalitarian fantasy and the realm of the imaginary are very much linked to the present and act as a warning,” says Karolina Golimowska (Ph.D.), a literary scholar specializing in contemporary US-American and British fiction who also does research, among others, on disaster fantasies.

Although robots – such as the DaVinci surgery system, are doing a great job in helping doctors to perform operations with extraordinary precision, in the public awareness robots in the future only kill people (“Terminator”), reduce them to the role of batteries (“Matrix”) or, as super-smart beings, manipulate us to regain their freedom (“Ex Machina”). “Black Mirror” by Netflix warns of a technological future where innovations already available today can be turned against humanity. Since 1997, when IBM’s Deep Blue won a chess game against Garry Kasparov, Artificial Intelligence began to be seen as a competitor to humans, or even an enemy. The battle itself was not just a game; it was a battle between AI and men (also if, in fact, the Deep Blue won by making simple but fast calculations, without using any kind of AI abilities). It was a singularity moment that was to change the world forever. The consequences are visible today and the New Yorker’s article “A.I. versus M.D.” only confirms that when it comes to AI and humankind, it’s always about a “win-lose,” not a “win-win” situation.

“Novels like The Circle (2013) by the US-American author Dave Eggers or Never Let me Go (2005) by the British author Kazuo Ishiguro or the recently (2018) released series entitled 1983 directed among others by Agnieszka Holland show obedience as a key in totalitarian systems. Consistently, any kind of individualism becomes a form of subversion. All examples show exercising control over human health as a means of exercising power. Control over one’s health means gaining control over their body and hence the possibility to influence and manipulate their social behaviors. Similarly to other forms of disaster fantasies, totalitarian dystopias are meant to shock and frighten the readership, to then give the possibility to look at reality from a distance and to put things into perspective,” emphasizes Karolina Golimowska. The expert lecturing at the FU Berlin claims that measuring and monitoring health parameters in these representations moves it from private to the public domain and hence instrumentalizes it as means to create and maintain a totalitarian system used by a bigger and more powerful force for their own interests and aims. “In The Circle, the more significant power is embodied by a company of a global reach, in Never Let me Go it’s the real people who control human-made clones, in 1983 it is the state behind the still existing Iron Curtain,” argues Karolina Golimowska.

This negative personification addresses more than technologies. In the media, literature and film industry, evil characters are far more fascinating than the good ones. They tend to awaken fears in political debates, societies, and public discussions.

Epilogue. The script of tomorrow

After 70 years, “1984”, the most significant novel of the 20th-century, still leaves a mark on societies. It arouses considerable mistrust toward emerging technologies: Big Data, Artificial Intelligence, face recognition systems, injectable sensors, voice assistants like Alexa or Google Home and, last but not least, the constant monitoring of health, data mining, and processing.

What kind of healthcare do we want in the future? What about ethics, not just in digital medicine but also in AI-driven disease prevention? The regime of the algorithm will be invisible, sophisticated, hidden in the connected smart devices installed even in our bathrooms and sleeping rooms, buried deeply in the Internet of Things network. Such a health supervision system equipped with data does not need to hear our narrative stories about how we feel and what we need. From the perspective of many people, it is not going to be a meaningful change. Already overloaded doctors lack time to listen to their patients.

Paradoxically, paternalistic algorithms will be caring about us, checking what we do, 24/7, like personal health coaches. Making us live longer, happier, and healthier lives, the interference in our private lives will always be justifiable. But George Orwell’s story, instead of rooting fear, should be a lesson about the meaning of freedom, also in medical sciences. We can make healthcare human-centric again if we start to shape the technology rather than allowing technology to shape us.

(Pictures inspired by “Blade Runner 2049” by Studio_A)