Important data based research under threat

19 November 2015        

Population research has been saving lives for hundreds of years, but now it is coming under threat from a new law. Help us campaign to change it and protect our lifesaving work. 

It is hard to believe that doctors would once prescribe cigarettes for stress. Or that doctors didn’t understand how infectious disease is spread. Or that having clean hospital wards wasn't considered important. We understand our world so much better today and we know so much more about the causes of disease and how to prevent and treat it.

Much of this progress has been underpinned by a unique and valuable resource: data. When researchers examine big data sets, for example NHS patient records, patterns start to emerge and they can use these to increase our understanding of disease.

Data through the years

We often think of the 21st century as the era of “Big Data”, but in fact, this kind of research has been happening for hundreds of years. Florence Nightingale used statistics to analyse causes of death during the Crimean War; John Snow mapped data to understand the transmission of cholera; and Austin Hill and Richard Doll used patient data to link smoking with lung cancer and combined have saved millions of lives in the process. 

Now, with access to vast datasets and powerful computers which our predecessors couldn’t have dreamed of, we are in position to make new, more exciting advances in medical research. At the BHF for example, we are using patient data to understand more about the underlying causes of heart disease from diet to air pollution. This kind of science is now under threat. 

Threat to the future of research

A piece of legislation being debated in the European Union has the potential to shut down much of the data based research which is currently taking place, not only in cardiovascular disease, but across all medical research. The European Data Protection Regulation does not take into account the needs of researchers and, as a result, will make much lifesaving work impossible.

Patient data is, of course, sensitive and it is vital that it is kept safe and secure. At the British Heart Foundation, we believe that we must strike an appropriate balance between the work of researchers and protection for patients. 

In the UK, we have robust ethical approvals in place which govern how researchers access data. Our researchers take their responsibilities seriously and there has never been a data breach of records being used for research purposes.

In its current form, this new legislation will not benefit patients, it will harm them by slowing, and in some cases stopping, the research which is needed to develop new and better treatments to help them. 

We are working together with other charities, including Cancer Research UK and the Wellcome Trust, to make sure that the Regulation is altered to incorporate the needs of our scientists, while still protecting patient privacy. We need your help.

Vital negotiations are going on at EU level right now and we must make sure the voices of patients and of researchers are heard.