A new campaign to safeguard personal data use in research

When issues really matter, it is vital to stand up and make sure your voice is heard loud and clear.

And today, that’s what we – and our partners in Europe and the UK – are doing in response to the EU’s proposed Data Protection Regulation.

Back at the start of the year, we wrote about how the European Parliament was considering new regulations that could harm research, by limiting the way researchers access people’s personal data.

This sort of data is the life blood of research. From growing our understanding of disease, to securing a better grasp of how societies work, personal data – accessed by researchers carrying out ethically approved research – is crucial for making life better for all of us, every day.

So the proposed regulations were something we found very worrying indeed.

This week, the Council of Ministers – the part of the EU Parliament made up of representatives from national governments – agreed on a particular part of the draft law that marks an important and positive new departure for research.

In contrast to the European Parliament’s position, the Council’s changes maintain an original, balanced approach proposed by another part of the EU – the European Commission. The Commission’s proposal exempted researchers from having to ask consent when they used personal data.

The Council of Ministers’ new proposal also acknowledges the vital role of safeguards in protecting people’s privacy when data are used in research.

But although this is an improvement, it’s not enough – there’s still a long way to go to make these regulations work for researchers and, ultimately, the public.

We say researchers must be allowed to continue to use personal data in the same way they do today. But there’s confusion and misunderstanding about personal data and research, and these issues need to be addressed.

That’s why we – alongside our partners in the UK and across Europe – have decided that the time has come to set the story straight on personal data.

Setting the record straight on personal data

Our new campaign has been developed in collaboration with the Wellcome Trust, British Heart Foundation, Science Europe, European Public Health Alliance and the European Patients Forum. It launches today and gets to the heart of the issue on the proposed Data Protection Regulation.

We give voice to the patients who have benefited from research using personal data, as well as to the researchers whose game changing work would be compromised. For example, here’s what cancer survivor Richard Stevens has to say on the matter:

https://www.youtube.com/watch?v=INux-UtEWuo

And here’s Professor Michel Coleman from the London School of Hygiene and Tropical Medicine, who’s work on cancer survival rates relies on analysing patient data:

http://www.youtube.com/watch?v=iSx-XcCuB5g

The campaign will also clarify some of the techy concepts associated with the issue, and we’ve compiled a handy collection of case studies that show, in real terms, the potential impact of the regulation as it stands at the moment.

Our aim is to educate and inform policymakers working on the issue in Brussels and ultimately ensure that life changing research can continue.

Once the Council agrees a position on the document as a whole next spring, the issue will be debated by all three institutions – the European Parliament, European Commission and Council of Ministers, who will  work together to finalise what the documents says. We have to make sure this works for researchers, patients and the public.

So take a look at the campaign website, follow the campaign Twitter feed (@datamattersEU) and let us know what you think!

Catherine Castledine is a public affairs manager at Cancer Research UK

Image

Image by Diliff (own work), released under CC-BY-SA-3.0, via Wikimedia Commons