#EAPM: Saving lives through Big Data collection and usage

There is more-and-more evidence emerging that the proper use of Big Data in many medical contexts can save lives, writes European Alliance for Personalised Medicine Executive Director Denis Horgan.

It has been estimated that Big Data could save the public sector €100 billion in operational efficiency improvements.

For its part, the European Commission has discussed this many times, as have European Parliamentarians, in workshops and meetings that have produced their own reports.

Meanwhile, the Alliance (EAPM) has produced its own documents on a lighthouse initiative for a Europe-wide data ecosystem in the context of personalised medicine.

Over time, the Commission has called for the EU to support data initiatives that are capable of improving competitiveness, the quality of public services and ultimately the lives of citizens.

Such initiatives hold the promise of maximizing the impact of EU funding within relevant and important economic sectors. The Commission has in the past presented personalised medicine as one of the possible target areas.

The EU Executive has also flagged up the impact of the General Data Protection Regulation (GDPR) is likely to have on the use of personal health data, in one case specifically in cancer research.

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Access to data, ethical standards, data storage, and a European project on cancer survival have also been discussed, alongside the possibilities for a ‘broad consent ‘ for patients donating their data. This has been defined as a one-time consent given by data subjects in order to allow use of their data for a variety of research studies - under strict criteria, of course.

This is all geared to facilitating more and better cancer research.

Many are agreed that cancer research needs more flexibility and less obstacles. Population-based cancer registries seek to provide reliable information on cancer, including population-level indicators on, among other things, incidence, prevalence and survival rates. All vitally important swathes of information.

In Europe, the Joint Research Centre, or JRC, works with cancer registries in order to agree and implement common rules and procedures aimed at producing top-quality research and making data comparable.

At the beginning of 2016, there were more than 100 population-based cancer registries covering some 70% of the EU’s population. These are coordinated by the European Network of Cancer Registries.

Clearly, research into rare cancers and other rare diseases is often international so, to ensure the ability to transfer data between countries, there is a need to simplify the exchange processes. The bottom-line is that we need to make international data transfers easier in order to benefit patients now and in the future.

The JRC has said that cancer researchers often link personal data to patients sharing their data to ensure high-quality information and also to avoid unnecessary and time-consuming duplication.

And according to the experiences of health-care providers, a great deal is already being done to protect the safety and privacy of personal data - although this, too, can be improved by using new technology.

We already know, also, that the majority of patients are happy to donate their data - under the right circumstances - to help not only themselves but other patients down the line.

Before the drawing up of the GDPR, the Alliance and others pointed out on many occasions that access to data for health research has always come under robust practical and ethical rules in order to protect data subjects and guarantee confidentiality.

It is also a fact that trying to get individual consent for every single research project out there, and therefore going back time after time to patients, would be very costly and essentially impractical.

Unfortunately, specifically in cancer care, there is a large disparity in survival rates across the EU’s member states. But the sharing and optimal usage of Big Data for research could certainly help to change this.

Health data is obviously vital for industry as it affords them the chance of gaining a better understanding of cancer, leading to improved prevention, diagnoses and intervention.

The whole issues surrounding the collection, storage, sharing and use of Big Data are complex and large, and EAPM has been addressing them at every level and every opportunity, not least through its Working Group on Big Data.

The Working Group has stated that: “By 2020, the EU should endeavour to achieve widespread benefits for patients and citizens from personalised health care by defining and subsequently executing a Data Strategy for Personalised Medicine.”

As one would expect, given the issues, key among the Alliance’s aims is to substantially improve co-operation and collaboration among all stakeholders as well as encouraging all players to communicate better across inter-connecting areas in healthcare (and even within their own fields).

To augment the Group’s core aims, and in association with the Bulgarian Presidency of the EU, EAPM will hold its sixth annual conference in Brussels,on 27-28 March, entitled ‘Personalised Medicine and the Big Data Challenge’.

Many of the issues outlined above will be up for discussion between the Alliance’s broad range of stakeholders.

The conference will look at the fact that, with rising healthcare costs and individual health systems being increasingly challenged, Big Data has the potential to have a positive impact on the health of all of us and provide diagnostic, economic and efficiency benefits, ensuring that patients receive the right information and the right treatment at the right time.

This will lead to a healthier and, thus, wealthier, Europe. The potential for bettering the health of the EU’s millions of citizens across member states is therefore huge.

It is becoming ever clearer that genomic, scientific and technological advances have the potential to reduce costs while having clinical relevance in rare disease, cancer, infectious diseases, and increasingly complex diseases.

Meanwhile, medical research, clinical trials and more are generating unprecedented amounts of the Big Data that is moving treatments forward in many disease areas.

However, as discussed, there are still numerous challenges, and the need for cross-border, pan-European collaboration is greater than ever before.

The conference will take also specific looks at areas such as haematological diseases and diabetes, with registration opening later in January.