‘Little Data' can be ‘Big Data’ too

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

While access for patients to innovative drugs and treatments is a hot topic at the moment, not least in the European Parliament, there’s plenty going on in the area of Big Data too.

The setting up last year of the Big Data Value Partnership has been a welcome move as this is a partnership between the Big Data Value Association (BDVA) and the European Commission. The BDVA represents large and SME industry and research. 

A basic principle, it says, is transparency and inclusiveness with the goals of boosting European Big Data research, development and innovation while fostering a positive perception of this valuable and virtually limitless information.

The European Alliance for Personalised Medicine (EAPM) – and its Big Data Working Group – welcomes this initiative and has already engaged with the Partnership, which came along in the wake of a Commission communication of July 2014. Due to EAPM involvement, this used the example of personalised medicine as a domain able to support data initiatives capable of improving competitiveness, quality of public services and citizens’ lives.

While the Big Data Value Partnership does not focus specifically on health, (areas include transport, retail, energy and entertainment). its potential impact in this arena is huge. With this in mind, EAPM is engaging with the Partnership in order to see a domain on health included, with a particular focus on personalised medicine.

EAPM has produced its own document and strategy for 'A lighthouse initiative on Personalised Medicine' that calls on the EU, by 2020, to endeavour to "achieve widespread benefits for patients and citizens from personalised health care by defining in 2015, and subsequently executing a data strategy for Personalised Medicine".

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Big Data is certainly not going away and predictions for its growing influence in health care in the near future include a greater use of ‘smartwear’, much better access for patients to their own health records and even much earlier warnings about epidemics.

So what is it? Big Data represents the vast and continuously growing amount of health information and its usage to drive innovation in translational research and health outcomes tailored to the individual.

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.

Getting a Data Strategy for Personalised Medicine right in Europe would yield multiple benefits. Not only would it accelerate the development of more effective treatments and potentially help with the management of health-care resources, it would also act as a foundation for private sector investment
and jobs in R&D in Europe.

Data is being used – and gathered – everywhere, every day in myriad ways. Less ‘big’, for example, are the technological uses that enable cutting-edge telemedicine services that dispense health advice to a patient’s mobile device, wearables such as blood pressure cuffs and even remote HIV testing.

These data considered individually may be small, yet taken together they could add up to a significant and useful amount if stored and shared properly, taking into account all moral and ethical issues that surround data privacy and patient permissions.

Data from wearables, for example, could be highly valuable in assessing the right treatment for the right patient at the right time and even in identifying patient subgroups.

Unfortunately, at the moment, these data are stored in ‘silos’ which may not just mean one hospital but even in different departments of the same hospital so that, while the data is useful on an individual level, its broader value is being under-utilized. This represents a microcosm of the whole Big Data problem in Europe and beyond.  

To get the most from this incredible new asset, we need among other things reproducible analytical methods in both research and clinical practice, enhanced clinical utility via establishing methods of reporting that empower the clinician, high-quality standardized clinical data with appropriate levels of security and access control plus analysis of internal datasets in the context of ever-increasing large public domain datasets. On top of this it is necessary to facilitate biomarker identification and validation through integrated analysis-ready views of clinical and ‘omics’ data – which sounds complex, because it is – and so much more.

Big Data is here to stay. The task now is to learn how to use it - and decide how to manage it - for the benefit of 500 million potential patients across the EU’s 28 member states. EAPM will be working continuously this year, and in future years, to ensure that this is the case.

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