An article by Dr. Axel Wehmeier, Head of Telekom Healthcare Solutions.
Today, medical science knows a great deal about individual diseases and how to treat them with drugs and therapies. We know very little, however, about the individual interaction between treatment method and patient. And from a genetic standpoint, every one of us is unique. Each of us also maintains individual lifestyles: we exercise too little or run half-marathons, eat vitamins or too much fat, smoke or don't smoke, drink alcohol or are teetotalers. In short, everyone is unique, each with their unique lifestyles. As a result, a given therapy can be highly effective for one patient but have undesired side-effects for another.
Medical research needs data
Personalized medicine will change this: it will provide much more precise diagnoses and enable custom treatment for far more people than is possible today. A prerequisite for this is collecting as much information as possible and making it available to medical research analysts – in other words, big data. Many people see this area as the next major revolution in medicine; the British Guardian believes it presents "opportunities of biblical proportions."
Fear of becoming "transparent patients"
But the idea of big data still strikes fear in many patients and doctors. Some even become uneasy as soon as search engines analyze questions about cough syrup and washing hands to calculate the spread of a flu epidemic. And at the latest, dread arises when experts speak of "robotic medicine", in which computers will analyze patient data in future and then make specific suggestions for cures. The fear of the digital patient and of the associated risk of unauthorized access to medical data is vast. The "transparent patient" is the ultimate nightmare scenario in digital healthcare.
Health is our most important asset
But such misgivings will not help us make progress. The overall dilemma becomes crystal clear when we consider the nearly four million people in Germany who suffer from one of the 8,000 known rare diseases. What they all have in common is the difficult search for diagnoses, doctors and therapies. In extreme cases, one disease might only affect a few dozen people worldwide; their data is scattered over individual hospital servers. In such cases, competent medical advice is as rare as the disease itself. Who can blame afflicted patients for sending their entire medical histories as an e-mail attachment? As long as someone can help. This reminds us: health is our most important asset. That's why we mustn't let fear prevent us from protecting it.
We have to do a much better job of explaining
Nonetheless, we have to take people's fears seriously. Personal medical data must be given the strongest possible protection. But technical precautions alone are not enough. And even if we cannot stop the course of medical progress, the expected benefits – from data analytics, for example – will be delayed if we don't get the patients on board on our way to digital healthcare. We have to do a much better job of explaining the benefits of such analyses. They must not be an end in itself.
We also have to be transparent as to what is done with this data. Which data will be saved and for how long? Where and how? Who has access to the data and which analyses will be performed? How will the data be protected against unauthorized third parties, such as employers? This, in particular, is something companies must deal with. We've never been able to encrypt and protect data better than we can today. This statement has to be true of tomorrow, too. And to enable this data to be shared in the first place, the systems must be interoperable. Relevant solutions are already available.
Risk of cyber attacks
The politicians also have to do their homework: the current legal framework in German lags far behind the technological possibilities. Section 203 of the German Criminal Code ("medical secrecy") describes strenuous regulations regarding the distribution of data: it simply forbids it – but only for private providers, however. But the fact that in the near future, hospitals will not be able to operate their IT securely without the aid of external, non-medical service providers is not reflected anywhere in the Criminal Code, nor in other specific laws. In fact, the current regulations actually increase the risk of successful cyber-attacks on our most sensitive data.
The bar has been set high
Things continue to develop, however. Shortly before the end of the year, the European Commission published a report with ten recommendations for establishing and using big data in healthcare. They have set the bar high, but it at least gives us a foundation. Patients are also signaling their approval. According to a survey by auditing firm PricewaterhouseCoopers (PwC), 71 percent of Germans would make their data available if it helped to prevent disease or develop better therapeutic options.
Data analytics harbors vast potential
The potential of data analytics is increasingly being applied to medical practice. Scientists are using electronic registers to research rare diseases, for example. This approach makes it possible to document afflicted patients internationally and recruit them for clinical studies, to experiment with new therapies. It makes it possible to identify at least several hundred cases of a given disease, even if a specific country doesn't have more than a dozen itself. So we are taking baby steps toward big data, but at least we are taking them.
Enormous advances in knowledge
There are other examples of vast potential of this technology, such as the computer game "Sea Hero Quest", which is revolutionizing Alzheimer research. And companies such as sistemas genomicos in Spain and bio.logis in Frankfurt (Germany), which offer analytics of individuals' personal genomes. The amount of data involved in an analysis is enormous: a full genome entails around 1 TB of raw data. But the potential to gain knowledge – about inherited diseases and their treatment – is also enormous.
How should we deal with this knowledge?
Just how far should we let big data go? This isn't just a question for lawyers and privacy advocates; it's also a fundamental ethics issue. Do we want to be able to know whether we and our life partner are genetically compatible for parenthood, or whether potential offspring are doomed to suffer from inherited diseases? How should we deal with such knowledge? With whom do we share it? Will digital medicine be limited to those with top-shelf insurance policies, like it is today, or will regular patients also benefit? Should we as societies be making full, unconstrained use of the opportunities inherent in digitization, simply because we can, or do we need to draw the line somewhere? Where should we draw that line, and who should draw it? Can we leave this decision up to the patients alone when it comes to these key questions about life and death?
What kind of digital world do we want to live in?
Public debate about the ethics of algorithms is just beginning. In the end, all of us – and each one of us – must ask ourselves what kind of digital world we want to live in. Those who seek answers for the future often find it helpful to search in the past. Big data is as important to medical research today as X-rays and microscopes were toward the end of the 19th century. It was the microscope that enabled German pathologist Rudolf Virchow to identify cells as the location of disease, finally putting an end to the notion of the "four humors". Without it, cancer would still be called "consumption" today.