Big data in healthcare: What options are there to put the patients in control of their data?

Despite of the significant improvement in life expectancy over the past 50 years there are several growing challenges that are putting pressure on the sustainability of EU healthcare systems. This unparalleled situation is offering the right momentum to rethink business models on healthcare systems which require a new strategic approach shifting from a volume to a performance based model- value for money. Currently big data does not efficiently contribute for improving healthcare. In an increasingly empowered digital society, big data has now reached every sector in the global economy. Personal data has become a new form of “currency”, nevertheless, this “currency” is not flowing in the healthcare sector because patients are not in control of their medical health data making impossible to build the trust that is needed. To reach the full potential of big data in healthcare at the EU level, with a significant economic output in the ecosystem, it is essential to establish a working model of balanced interests, identifying each participant’s priorities, challenges and value opportunities focusing around the core of all innovation – the patients’ data – overcoming some barriers that are creating inertia, such as privacy protection, legal conformity, standardisation, interconnectivity, benefits and governance. The group’s recommendation is to create a bottom-up model, focusing on a patient centric approach - the patients’ data - from an exclusive to an inclusive ecosystem. Promoting transparency between doctor-patients relations and implementing a new market model – the “banking model” system which will promote patient trust and value perception, key features to successfully implement a new competitive pan-European market. It is necessary to enable individuals to understand and manage, in a secured environment access, the use and value of such individual information in an ecosystem, where the interests of the different stakeholders, the fundamental rights of the patients and the legal constraints are fully taken into account and respected. As patients are the primary source of Patient Health Record data (PHR), it is essential to design a user experience that is well accepted. A chip card model similar to a bank card is proposed to materialise the digital data with the physical object. The previous recommendations are fully aligned with the core principles and strategic actions of the EC Health Strategy: prosperity, security and solidarity. An EU Governing Body should drive gradual implementation of these solutions.