'Big Data' and the co-operative solution

By European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan

'Big Data' is with us and here to stay. Its use in the field of personalised medicine, or PM, cannot be understated but it comes with its own issues.

Data privacy is a concern for many and ways need to be found to strike a balance between protecting the citizen while still allowing access to information and results that can benefit society and improve the quality of life, treatment and outcomes for Europe’s 500 million citizens.

These citizens will encounter differing health problems, including rare diseases such as the many types of cancer, and these illnesses will be spread across all 28 Member States.

The banking of health data and records is already important and will become more and more so. And given that healthcare is usually expensive and often less efficacious than it could be, it is clear the banking of, and access to, health records will improve these issues.

Currently, this vital information is stored in separate, multiple ‘silos’ and is difficult to share. This clearly reduces its potential value to doctors, scientists and researchers across the EU. Many, including the European Alliance for Personalised Medicine (EAPM), argue that EU legislation puts too much emphasis on protecting the individual and too little on the undoubted societal benefits that could be achieved with better use of the masses and masses of date that are now being gathered and stored.

When it comes to the brave new world of PM, in most cases treatments and diagnoses rely on molecular differences between individuals. These cause different susceptibilities to diseases as well as different reactions to drugs and treatments. Targeted interventions and early diagnoses in a preventative sense are key to PM, as are technological advances in genome sequencing, but the millions of data sets need to be available, analysed and cross-referenced quickly, easily and effectively.

There is no doubt that the value of Big Data in this field has been widely recognised as offering the potential for cost savings, as well as other economic benefits such as less time spent away from the work place when sick and the possibilities of huge investment pouring in to the EU. The question is how to make this happen.

Health data banks, run as cooperatives, have been put forward as a viable solution that both safeguards the citizen and empowers him or her as he or she will own their data and be able to decide where, when and how it may be used. Meanwhile, this vital, personal information will be safely stored under strict ethical codes and rules.

Members of such cooperatives will be able, from day one and forever, have the choice of who can share their data and for what purpose and, should any monies be earned from third parties, they will also be able to decide where this cash goes. They will truly own their own data and be able to reinvest any proceeds in, for example, research and/or education of r the betterment of society.

Unfortunately, at this moment, no truly working cooperative of this nature exists. But according to some data banks, there is a general willingness to take part in the research process, regardless of any financial issues. There is a desire to help themselves and society by donating information – obviously within suitable guidelines ensuring ethics and the relevant permissions..

Personalised medicine is largely about the empowerment of the patient – allowing him or her to be central in every process and decision about their health.

Health data banks run on cooperative lines will undoubtedly contribute in a major fashion to this.

Under the basic tenet of ‘free the data, but do no harm’, EAPM is working with all stakeholders to build a brighter future for all Europe’s citizens and recognizes that this can only truly happen when this vital, growing source of information is made available to those who can realise its potential.

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