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By Martyna Giedrojć, Policy Officer for Health Systems

A new mantra is coming to dominate EU discussions about digital health, namely that the “Big Data revolution will change our lives”. While indeed, “big” data presents a formidable opportunity – and sizeable challenge – to the development of digital health in Europe, we must ensure that public attention is also focused on important issues such as privacy rights and the threat of exclusion.

EAGER FOR DATA
The EU study on the Big Data use in Public Health, Telemedicine and Healthcare, published at the end of last year, identified policy recommendations in ten priority areas to maximise the opportunities Big Data can bring to public health in the EU. In theory, Big Data in healthcare can predict epidemics, improve quality of life and design new models of treatment for diseases. Just a few days ago, the European Medicines Agency (EMA) together with the Danish Medicines Agency have established a new task force to explore how medicines regulators in EU can use Big Data to support research, innovation and robust medicines development in order to benefit both human and animal health. Unfortunately, Tapani Piha, Head of DG SANTE’s Cross-Border Healthcare & eHealth Unit didn’t indicate many practical examples of Big Data use for healthcare, while speaking at a recent event on Artificial Intelligence in health.

Interest in Big Data is rising – particularly in the context of using personal data for commercial purposes. A Hearing on the Fundamental Rights Implications on Big Data in the European Parliament in December 2016 revealed that the results of Big Data analytics are most kindly used by specialised companies to foster and design new businesses. The list of interested clients includes all major pharmaceutical and medical devices industries. People leave digital footprints everywhere they go online, and every piece of information has a value on the market, even in healthcare.

SO HOW BIG IS THE DATA?


Source BBC News

That Big Data can be acquired from various sources that go beyond the healthcare domain is a big concern. It might include data derived from patients and insurance records, wearable sensors, genetic data and those collected by mobile apps or social media use. If you, like many others, use a mobile phone to track the number of steps you take, monitor how many calories you burn and count the number of hours slept at night, this information is also a base to create a profile of you as a patient, consumer, parent, employee, citizen. Data analysts will be able to establish links between factors such as gender and salary, location and crime risks, personality and life expectancy. Based on ever more data, it might be possible to predict a person’s intelligence, age, religious and political views. But how accurate and authentic will this profile be? After all, it is also common practice to create a blurred image of ourselves on social media. 

“Biased and incomplete data is inevitable – more data is not always better data” Privacy International

SEGREGATED BY OUR HEALTH – IS THIS WHAT THE FUTURE HOLDS?
During an EPC event on Self-care and eHealth literacy speakers concluded that ‘Europe cannot afford people to be in bad health’ anymore, and claimed that digital health technology is the key. However, Big Data raises big concerns about its impact on our dignity, fundamental rights and freedoms, including our right to privacy and ownership of personal data. Key concerns include lack of transparency, uneven access to information, unfair and discriminatory assumptions about people’s behaviour or backgrounds by policymakers or companies, or social and cultural segregation. What if the technology that enables us to monitor our health condition now, will be used one day to segregate those with a genetic predisposition to cancer, or people living with multiple sclerosis, rare diseases or mental health problems?

Digital systems are being built now, faster than regulators can build up safeguards. How we – as civil society, patients, policy makers, healthcare providers and industry – shape them will have long-term consequences, and not only in the healthcare sector. Patients, health professionals and the entire public health community will not benefit from “big” health data until we create systems that efficiently and reliably convert diverse data into useful knowledge which safeguard our rights.

Martyna Giedrojć

Policy Officer for Health Systems

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