The Guest Blog

Guest blog post by Jurgi Camblong, CEO and founder of Sophia Genetics.

To ensure optimal treatment plans for European patients, we are calling for the swift deployment of recently agreed new European data protection guidelines, and the rapid development of an EU compliant healthcare data pooling framework, which would foster a more active approach to sharing pseudonymised data and knowledge between healthcare institutions.

The revolution in using genomic data in routine clinical practice is rapidly progressing and has been made possible thanks to the dramatic price drop of Next Generation DNA Sequencing (NGS) technology, which enabled its rapid adoption by hospitals. While in 2010, use of this equipment in European hospitals was restricted to research departments, today almost every European university hospital has deployed the technology for diagnostics, benefitting thousands of patients with cancer and hereditary disorders every year.

Since 2014, some 150 healthcare institutions across 23 European countries, 90% public hospitals, have been gathering on a single analytical platform for clinical genomics – Sophia DDM® – to form the world’s largest clinical genomics community for molecular diagnosis. By pooling their data, and making sense of them thanks to algorithms and machine learning techniques, such platform have been enabling accurate, standardized and secure genomic data analysis, as well as facilitating knowledge-sharing of clinical interpretation between diagnostics experts, thereby unlocking the immediate benefits of Data Driven Medicine for European patients.

Thanks to this community, EU hospitals have been diagnosing 36,000 patients to date and a total of 80,000 patients is forecasted for 2016; placing Europe ahead of the US in precision medicine. All this in respect of patient data privacy, by allowing patients to remain owners of their personal information.

The question is now how to leverage the power of such a trusted technology and platform to scale-up adoption of Data Driven Medicine in Europe and address the needs of millions of patients? 1) Increase budget for clinical genomic data interpretation, 2) define clear European guidelines for data pooling, and 3) accelerate the adoption companion diagnostics for drugs.

Now that there are no more technological bottlenecks to genomic data analysis for routine clinical diagnostics, there is an opportunity for public health authorities to invest in clinical interpretation with additional staff budgets allocated to this. EU institutions can play a greater role in making sure we address the next bottleneck of clinical interpretation, through education, right staffing and budget allocation. To date, healthcare is missing the force and the skill set to advice on actionable clinical decision based upon analytical reports.

Also, if pooling data and sharing knowledge is crucial to improve the understanding of disease management, experience has shown it is not a straightforward process. Often, knowledge is siloed in the hospitals and laboratory, and there is no complete patient picture. This reduce the usefulness of data in predicting outcomes, or restrict its role in improving overall understanding of disease management. In oncology, being able to compute patients’ metadata – successful treatments, remission or failed therapies – on top of a patient’s genomic data, would allow better accuracy and to build patient clusters to identify optimal treatment plans

Finally, a whole new potential could be unlocked by urging large pharma actors to leverage the EU hospitals’ community and collective intelligence to efficiently and quickly support companion diagnostics for new drugs. The community could also be leveraged even before a drug is being prescribed, working with pharmaceutical companies in early stage of drug development, making then easier to tell which patients could benefit from it.

The creation of an EU platform with 150 healthcare institutions in two years has proven that Data Driven Medicine can be a reality today and is a fantastic opportunity for patients, clinicians and governments alike around Europe. By focusing on clinical grade analytical performance and data protection and privacy, a much required trust has motivated public and private institutions to build a collective intelligence so that the information of a patient in Paris can help better diagnose and treat patients in London.

To ensure optimal treatment for European citizens, this performance could now be leveraged as a standard by EU institutions thanks to the swift deployment of recently agreed European data protection guidelines, and the development of an EU compliant healthcare data pooling framework, which would benefit of European citizens, at the same time ensuring better spending of public money and resources.

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