The EU has to strike the right balance between fostering innovation and protecting patients’ privacy

January, 07, 2019

The EU has to strike the right balance between fostering innovation and protecting patients’ privacy

Thoughts of the Committee on Data for Healthy Societies following the 2nd Plenary.

By most measures, the last decades of digital transformation have revolutionised every domain of our life, our economy and services, including healthcare. From robot-assisted surgery to administrative support and lifestyle management, digitalisation allows faster, more innovative and value-based healthcare.

Without good ingredients, even the best recipes will fall flat. Health data are essential to trigger digital innovation, e.g. providing personalised care, boosting new biotech applications and (very much needed) fostering rare disease prevention and care. Relevant data shall be accessible in sufficient quality and quantity to enable healthcare settings to provide evidence-based medical treatment and work with predictive models. Intelligent systems could translate data and knowledge into insights to help healthcare providers make informed decisions about the care of their patients, significantly enhancing human medical practice.

Healthcare innovation does not only mean complex algorithms, artificial intelligence or supercomputing systems. It is also the result of smaller incremental changes, particularly in the habits and the expectations of patients. Most of us own at least one digital device that is faster than any supercomputer of 20 years ago! It is not uncommon to digitally book your GP’s appointment, have a video consultation and access your health record on your mobile phone, as well as across borders.

All these promises of the digital health revolution and big data era do not come without constraints and challenges.  At the patient level, along with the promise of effective and personalised healthcare, it brings challenges to privacy as well as ethical implications. At the institutional level, it poses the challenge of standardization needed to provide a uniform and relevant patient care. At the health system level, it brings data-quality into question for fragmented and heterogenous data.

The Committee on Data for Healthy Societies identified 3 pillars to address the upcoming challenges for European healthcare systems and citizens together.

• First, we consider the need for building an eco-system of health data that could allow patients to easily access their own data while enabling physicians to provide better preventive and curative healthcare.
• Second, we are looking into how to better foster data-driven health research, opening up new and far-reaching horizons to healthcare.
• Third, we focus on data privacy and security, considering its social and ethical implications and risks; from discrimination to health data breaches.

We believe the EU has to strike the right balance between fostering innovation (through data accessibility and interoperability) and protecting patients’ privacy. In the dichotomy between openness and security, we must find the right middle ground to maximise the value of data and the safety of the European citizens.

How can the EU stay ahead of the game and create a platform for digitalisation while making sure all the stakeholders act ethically and respect the patient’s fundamental rights? Let’s find out!