Lifesaving research is stalling without access to patient data

9 December 2014        

Simon Gillespie

Our Chief Executive Simon Gillespie says that lifesaving research could be at threat from delays accessing patient data.

Today, we know that smoking causes heart disease and cancer, that asbestos is dangerous and that HIV is sexually transmitted. We take this understanding for granted, but we don’t always think about how we came to it. The answer, in many cases, is patient data.

Whenever we visit the GP or go into hospital, data is collected about us ranging from our age to the medical conditions we have to the medicines and treatments we’re prescribed. We all benefit individually from this as our doctors view our medical histories and are able to tailor our treatments accordingly.

But there is another way that this information can help us.

There are 7 million people living with cardiovascular disease in the UK and it kills more than 161,000 people every year.

It will be world class scientific research which brings these numbers down. In order to achieve this, we need the Government’s help to ensure that our researchers have access to the data they need to continue with their lifesaving work.

Researchers can look at the patterns in large sets of data and establish what causes diseases and how best to treat them. This kind of work has proved that high blood pressure increases heart disease risk and demonstrated the benefits of lowering cholesterol by using statins, now a standard treatment. Put simply, this research saves lives.

This kind of research has been driving forward our understanding of illness for decades and, as technology becomes more sophisticated, there are more and more breakthroughs within our reach. However, research using patient data is currently under threat.

The Health and Social Care Information Centre (HSCIC) is responsible for providing our researchers with the data they need to do their work. At the moment, we are facing unacceptably long delays to access this. One of our research grants, paid for by money donated by members of the public, has been on hold for months because of delays at the HSCIC. This means that we are wasting money and wasting time.

This is why, today, I have been calling on the HSCIC to address the challenges which we and others are facing in accessing data for medical research. The UK has some of the most comprehensive and valuable health records in the world and we should be using them to improve public health.

In addition to this, a piece of European legislation is currently threatening to drastically limit the way in which we conduct research using data in this country. If it goes ahead unaltered, valuable work currently underway may become illegal with huge losses to our knowledge of cardiovascular disease and other conditions.

We are calling on the European Commission to ensure that the needs of researchers are fully understood and reflected in the European Data Protection Regulation.

We do, of course, recognise that patient data is a controversial topic. An individual’s health data is highly personal and the public is understandably cautious about its use.

Recent controversy surrounding the Government’s plans to upload GP records to a central database, known as care.data, has undermined public trust in the NHS as a custodian of their data.

The idea behind the project, of improving our understanding of the treatment which individuals receive at a GP level and being able to monitor quality better, is a good one. However, the scheme was not well communicated and the public were not reassured that their data would be safe.

But we have an ambitious goal to radically improve prevention of illness and treatments for those who are ill.

So, the Government now needs to go about winning the public’s trust back with a combination of open communication and excellent data security standards.

However, we do not believe that there is a need to compromise between the needs of the public and the needs of researchers. We can maintain individual privacy, while, at the same time, using large scale datasets to advance our understanding of disease and improve the lives of heart patients across the UK.