#EAPM: Patients back Big Data. Let’s start from there…

When we talk about 'Big Data', what we mean is a massive collection of small data. In this case, it’s data garnered from individuals and used en masse when possible in health care to aid research and clinical trials into new treatments and medicines, writes European Alliance for Personalised Medicine Executive Director Denis Horgan. 

Patients have a huge stake in this.

Not only do they want to benefit from innovative treatments aided by Big Data gathering and its subsequent use, but they also want to help future generations by sharing their own data.

Let us be clear, in respect of personalised medicine, Big Data represents the vast and continuously growing amount of health information (including biomedical and environmental) and its important usage to drive innovation in translational research and health-care outcomes tailored to the individual.

Using these data to first understand the cause of disease, the medical profession can then develop new drugs and therapies to find the cure, as well as other health interventions targeting the individual.

The personalised, individual approach requires advanced technologies and processes to collect, manage and analyse the information and, even more importantly, to contextualize it, integrate it, interpret it and provide rapid and precise decision support in a clinical and public health context.

Not only does Big Data offer the potential to revolutionize the effectiveness of health interventions, it may also help ensure the more effective management of resources in what are increasingly cash-strapped public health-care systems.

Over the coming decades, the financial sustainability of health systems will become more and more challenging as the population ages. The number of over-65s in Europe will increase by 75% by 2060. Alongside this ageing population there is likely to be an associated rise in chronic illness which will lead to spending on health and social care reaching unsustainable levels unless we are able both to increase the quality of health outcomes and the efficiency of healthcare resources.

Big Data, in theory, offers the potential to do both.

It is widely acknowledged that ‘value-based’ approaches to the management of care are an ideal way forward. Big Data will be a key enabler of this. And in future, physicians and health managers should have real-time, real-world evidence on what works and what doesn’t for each patient.

And other trends, such as mHealth, will bring the benefits of Big Data much closer to the patient. And the patient is the biggest stakeholder of all when it comes to health care.

As alluded to above, it has become clear that patients believe it is vitally important to share their data for research. Some may have reservations, but there are solid and effective safeguards in place to protect the public, including the obligation to submit usage to ethics committees.

It is a misconception that it is impossible to keep personal data safe while still allowing its use for medical research purposes. It has been used in research for decades. Being realistic, whenever they can, researchers will ask consent before using personal data. But sometimes consent cannot be sought in practical terms. For just one example, a study might involve thousands of people on a pan-European scale, and getting hold of them all to ask for their consent throws up serious logistical problems. And what if they have died? Do we throw away all this valuable data stored down the years, thus ignoring the needs of hundreds-of-millions of potential patients across the EU’s member states? No, of course not.

The amount of data available (not just in health, of course) has never been bigger – it will continue to grow – and its uses for research purposes are invaluable. It needs to be generally noted that science will not stop moving forward, and the use of genetics in personalised medicine, the existence of biobanks and the availability of super computers for data-processing purposes, all combine to make the potential for the use of Big Data huge in the arena of health.

It can be used to drive innovation in translational research and health outcomes tailored to the individual – offering the potential to revolutionize the effectiveness of health interventions in what are increasingly cash-strapped public health-care systems.

No wonder patients are all for it.  Surveys strongly suggest that most patients are happy to share their data for certain types of research – as long as trust is there.

But while Big Data is vital in pushing back the boundaries of medical research, there have been - and still are - many barriers to its optimum and ethical use.

Current research infrastructure remains too compartmentalized, which adds cost and slows down the speed of new discoveries. This can partly, but not wholly, be blamed on proprietary technology but there is also a clear need for greater interoperability, within and between member states. The European Commission and individual health ministers across the EU can be hugely influential in this regard.

To make the most of all this massive amount of valuable information flowing into super computers and biobanks there needs to be a shared vocabulary and data-set standards, with agreed universal protocols for sending, receiving, and querying the information.

Meanwhile, data storage formats need to be interoperable although, granted, this may prove difficult in a competitive environment such as commercially based pharmaceutical research.

All of this information needs to be interpreted properly too, not least by clinicians working on the front line (continuous education of health-care professionals is, of course, another huge issue that EAPM is working on, not least through its annual TEACH summer schools).

In essence, there is clearly a need to build a health data ecosystem, as shown by mounting evidence that better use of data leads to greater efficiency (and thus lower costs) within member state health systems. EAPM therefore urges all stakeholders, lawmakers and policymakers to listen to the people who really matter. The patients.

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