Personalised medicine and the European data misery

Getting hold of such data in Europe is much more of a challenge for research and industry. In fact it’s a data misery – for in many European countries, health data is not managed centrally but stored in incompatible formats on independent IT systems. In addition, strict data protection laws make it rightfully difficult to use data without the explicit consent of the individuals concerned.

Overcoming hurdles

The frontrunners in Europe are the Nordic countries such as Denmark, which traditionally hold excellent electronic medical records that are also used for research. Estonia too has set up an e-government and e-health record system in the last ten years. The United Kingdom initiated the 100,000 Genomes Project to promote research in precision medicine³, but attempts to make NHS records accessible were less successful, and halted after a media backlash – the main problem being that patients had been insufficiently briefed⁴.

In Switzerland, the Swiss Personal Health Network (SPHN) initiative seeks to harmonise data from various hospital systems and make this accessible for research, provided patients give their consent. But given the fragmentation of the cantonally regulated health systems and the multitude of different IT systems at hospitals, this is a formidable task. What’s more, legislation in Switzerland hampers the use of data: the new federal law on electronic patient records seeks to improve the exchange of data within the healthcare system; it doesn’t foresee a secondary use of data, such as for research purposes, even with the consent of the patient.

Forging an independent path

So how can Europe with its fragmented health care systems and strict data protection laws compete with the US market-driven health data model and China’s state-controlled one? Unless we keep pace in the international arena, our hospitals will have to rely exclusively on artificial intelligence solutions from American and Chinese companies, just like Roche. Moreover, pharmaceutical companies may relocate their headquarters and research centres to countries richer in accessible health data.

One way out of such dependence lies in Europe’s faith in the autonomy of its citizens and in the new General Data Protection Regulation, which accords citizens the right to a copy of all their personal data, whether medical or non-medical.  Only they can gather data from their smartphones, patient records, purchasing data and genome data; only they decide who can access the aggregated data. Precisely this puts European citizens into a very powerful position; and to realise this potential a new framework of trust is required.  

Empowering the citizens

Switzerland is well positioned to take a leading role in establishing such a framework: world experts in data security and cloud computing are working at ETH and other Swiss universities; strong data protection regulations and a stable democratic government help to build trust. The non-profit MIDATA cooperative, jointly initiated by researchers at ETH Zurich and Berne University of Applied Sciences, operates a platform where people can securely store copies of all their personal data, including that from mobile sensors in smartphones5. And they decide whom to share this data with.

Such platforms mean that researchers and companies like Roche and GlaxoSmithKline can access not only limited subsets of data, but also comprehensive aggregated sets, which are so valuable for personalising preventive measures and treatment.  Moreover, any financial gain here does not go to Flatiron or 23andme shareholders – at MIDATA, for example, revenue is reinvested in services and research projects that benefit society at large.

If we create the conditions where European citizens will exercise their right to a copy of their data, use their data for personally selected services and make it available to research, then we have the opportunity to transform our current data misery into a democratically controlled data ecosystem – for the good of personalised medicine and society as a whole.