The age of Big Data is frightening to many, conjuring up images of George Orwell’s dystopian novel 1984, that Big Brother is watching you. But Big Data has its place in making today’s world better for the future. Big data is an inherent part of our everyday lives whether it’s managing all our financial transactions online or monitoring our every step to maintain fitness levels. But restrictions in data in some areas, namely medical research, are hindering our progress.

As a professor at the Centre for Cancer Research and Cell Biology at Queen’s University Belfast, I devote my time to finding ways to tackle the global epidemic that is cancer. And what may be surprising, is that researchers often cite the lack of data available as one of the biggest challenges faced when carrying out their research.

The main challenge is to bring this data together so that it is more than the sum of its parts. Many of these data types are in “data silos” which did not “talk” to each other. In cancer, you might have a rich seam of information on the genetic make-up of cancer cells from a patient in one data silo, while a totally separate database would have clinical information on the patient, their symptoms, their response to treatment etc. But what use is information on the genetic make-up of the patient’s cancer, if we can’t link it to their individual clinical information? Surely we need all information linked together in order to reveal previously unknown causes of cancer and use that collective intelligence to develop new diagnostic tests or effective treatments? And if you were researching a rare disease in the UK, say that caused a form of heart disease, wouldn’t it be much better to be able to share your research experience with scientists from other countries so that your joint knowledge would lead to a greater understanding of the disease that could underpin a new therapeutic approach? And the same need applies to cancer, a disease that doesn’t respect international borders, so why should we? Many of us in the cancer and rare diseases communities started to ask these questions and we came to the following conclusion – we need to share data, yes to increase our knowledge, but more importantly for our patients because they deserve the best that we can offer. Working together as the Global Alliance for Genomics and Health (GA4GH), we promote the responsible but effective sharing of genomic (pertaining to the genetic make-up of the disease) and clinical data, based on the firm belief that a data sharing collaborative can help save lives and preserve the health of cancer patients.

So how can we use Big Data to save lives? For rare diseases, the key is the ability to share our collective experience from across the world to expand our knowledge of the particular disease, and use that precious information to develop new therapeutic approaches. Say a scientist in the UK has found that a particular gene is damaged in a patient with inherited blindness.

But how do they know if this is a one off event or if it occurs in other patients? Imagine if you had, for want of a better phrase, a genomic internet, where you could search for other scientists throughout the world who had found a similar damaged gene. This genomic “matchmaker” does exist thanks to GA4GH, but international data transfer policies and financial barriers can prevent researchers from being able to take full advantage of this invaluable tool.

Patients are playing their part in data sharing too. ROS1 is a gene that, when it is damaged, can give rise to cancer. A group of patients who had a damaged ROS1 gene and were frustrated by the lack of progress in their disease, self-aggregated online (some 130 patients from 11 different countries including the UK). The ROS1ers (as they call themselves) have now approached a disease foundation and are working with them to help develop a clinical trial for “their disease”. To me, this type of patient-driven approach will become increasingly more common and will hopefully lead to more effective treatments for cancer patients.

As a global coalition, we have recently published a call for a change in policy and culture to enable data sharing that will ultimately increase survival and improve quality of life for cancer patients. The public have a key part to play in making this a reality, as patient involvement is at the very heart of this work. The public are invited to have their say in a UK-wide opinion survey on sharing genomic and clinical data and internationally, I would also urge the public to use their voice so we can get the tools in place to allow data to be shared and nurture a culture of data sharing for the benefit of all. Only then can Big Data really save lives.

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