Data-driven health care will soon collide with unimaginable societal challenges

6 December 2021

Health freedom

It seemed that healthcare was on the threshold of a great revolution. Thanks to new technologies, we should be able to precisely diagnose diseases, improve patient outcomes, live longer in better health, and even prevent diseases before the first symptoms appear. 

This kind of euphoria reminds me of the announcement of the first COVID-19 vaccine. The pandemic was supposed to end quickly since pharmaceutical companies have supplied millions of vaccines at record-breaking speed. And then the first problems came: anti-vaxxers protests, governments hoarding COVID jabs, the rising gap between vaccination rates in developed and emerging countries. 

Big dreams about the triumph of science over the virus were stifled by discussions on democracy and the “individual freedom to choose.”  Empathy and collective responsibility got lost between fake news and political debates.

It could often be heard that while China had managed to overcome the pandemic in a few months, democratic countries were still trying to curb the magnitude of the second, third and fourth COVID-19 wave. This provokes some key questions: Will digitalization in healthcare face similar resistance due to the heterogeneity of societies? How can we reconcile freedom of choice with collective interest? Can we avoid increasingly likely conflicts between data superpowers? And finally – is it time to talk seriously about digital sovereignty?

“My data, my choice” and bitter consequences of not sharing data 

AI algorithms are becoming the heart of modern medicine. So far, they have been primarily used in radiology, but soon they will analyze and forecast every person’s health and support management of population-level health. However, to create reliable algorithms, we need large high-quality data sets. Here scope and scale really matter.  

In medicine, data come mainly from the patients’ medical records (EHRs), clinical trials, data repositories and registers (private or public). So far, there have been three approaches: anonymous data acquired without the patient’s consent (old paradigm) or data collected with the consent of patients (virtual clinical trials), or the patients donating their data to research (new trend). However, since the amount of information in the patients’ electronic health records is growing tremendously, informed consent for data use is the only future of democratic digital economies. And that’s the only way from a legal standpoint in democratic countries.

“World data superpowers will set the standards of future healthcare.”

It will still take time to build a fair data economy. However, before citizens gain control over their data, we should determine where to set the boundary between an individual’s interest and the collective interest. 

Since advancements in life sciences and surveillance of communicable or non-communicable diseases are impossible without data, digitalization should be seen as a social challenge. Individual decisions on sharing data will determine the benefits for society. This applies, for example, to knowledge gained thanks to big data analyses on millions of patients’ medical records. Data-driven healthcare will be a test for civil society and show how collective responsibility can be balanced out by protecting an individual’s rights. 

Unfortunately, many societies did not pass a health “patriotism” test in the digital age during the pandemic – just look at the rate of downloads of the COVID-19 contact tracking apps. While in Finland, Iceland, Germany and Switzerland, they were high – sometimes exceeding 60% – in Eastern European countries, including Poland, the Czech Republic, Hungary and Romania, only a few percent of citizens downloaded them. When this data is correlated with income per capita, it leads to one seemingly simple conclusion: Most developed countries are characterized by robust civil societies. However, there are exceptions, such as France, where the acceptance for COVID applications is low. It’s too early to draw simple conclusions, but it got clear that factors such as trust in governments, leadership, health and digital health literacy play a considerable role.

Individuals have constantly been adapting to new social and cultural conditions

The experience of adopting new technologies during COVID-19 reveals just part of the future challenges in healthcare. Pandemic was a surprise (even though it shouldn’t be), forcing us to make revolutionary changes. Overnight, many novel technologies have entered everyday life, from mRNA vaccines to health monitoring of infected people right at home – it is no surprise that the unknown breeds resistance.  Humans don’t like rapid changes. Digitalization in healthcare will last decades and be rather slowly progressive than immediate. People will get used to innovations as they do for ages – here, we can rely on the evolutional processes seen in the history of humankind. Even considering that data and AI are turning the world upside down.

Of course, not everyone will be willing to become a part of a digital society. Following the principle of freedom of choice, it should always be possible to opt out.  At least initially – it will soon be almost impossible to function outside the system in the long term, just like nowadays, it is hard to live in a society without electronic banking.

Countries are building new walls of digital protectionism

If we look at the world atlas, two countries today are leading the digital race – USA and China. The critical advantage is access to the most precious resource of the 21st century – data. Data drives the development of new algorithms, digital services, economic growth and wealth. Yet, often it is data acquired in ethically questionable ways and sometimes even against human rights. Think about Chinese techno-authoritarianism and the US model of surveillance capitalism. It doesn’t only refer to countries but also big tech companies. 

Some experts say that the world is approaching data colonization – globally operating companies are mining data to grow faster and faster. Facebook or Google owe their domination to data harvesting. In a globalized data-driven world, people are becoming data mines. Many countries will depend on importing digital solutions from regions with different values, different perceptions of human rights and democratic principles. Well, if it doesn’t bother us in global trade today, why would we think it will be a problem in the future? 

According to the World Economic Forum, 92% of data from the West is hosted in the US. You won’t find European companies in the Top 20 global tech brands. Will the new concept of digital sovereignty – the ability to have control over your own digital destiny – solve this problem? Or will it drive digital protectionism? Do we need global rules on developing AI systems or certificates for ethically-approved algorithms?

We should start with an international agreement on the simplest principle – data is a private commodity. Yes, it will slow down the digital revolution. And it’s ok – we need sustainable digital evolution rooted in human rights, not a digital revolution with no control. We probably don’t want to repeat the mistake of rapid but disastrous industrialization. Democratic and ethical digitalization is the best model available, but it will require considerable effort in terms of interventions and regulations to ensure long-term benefits and wealth.