Why we need your data

Our Policy Officer Joseph Clift explains how our researchers need easier access to patient records - to make vital research discoveries

Heart research in the UK is amongst the best in the world, which means you can be confident that your donations are going towards life-saving science which holds real hope of beating heart disease. We fund around £100m of medical research every year, at more than 50 research centres in the UK.

But the research environment in the UK is not perfect. Our researchers have told us that too much of their time is taken up with unnecessary red tape and bureaucracy. The weight of this form-filling is slowing down vital discoveries that could lead to new tests or treatments for heart patients, or better ways of preventing heart disease.

One of their biggest problems is access to patient data. Many of the hundreds of researchers we fund need access to people's medical records in order to make new breakthroughs.

New report

That's why this week we've launched a new report calling on the government to make it simpler for scientists we fund to access the information they need. We're launching our report as part of our first ever Science Month this June, when we're sending out an SOS to ask you to Support our Science.

What type of data do we mean?

You might not know that information about you collected by your GP, or when you visit hospital, can help researchers to make breakthroughs in the fight against heart disease.

If you have given consent for your data to be used, researchers can search for patterns to work out whether a new test or treatment is effective. They can look at aspects of your lifestyle – such as your diet, whether you smoke, or where you live – to gain new insights about why some people are more at risk of heart disease than others.

Patient data can help pick up early signs of potentially important, unexpected side effects of drug treatments. Or they can find patients to take part in clinical trials, which is great news for patients like Jonathan and Paul.

The type of information that our scientists need includes:

• what medication you take
• conditions you have been diagnosed with
• when and why you are admitted to hospital
• information on lifestyle: your diet, how much you drink or smoke
• personal information such as where you live, your age, or your weight.

How does it help?

Access to patient data has helped to make enormously important discoveries in fighting heart disease and many other illnesses. It helped scientists:

• establish the link between smoking and diseases such as lung cancer and heart disease
• confirm the health risks of asbestos
• show that high blood pressure increases heart disease risk
• work out how the AIDS virus is transmitted
• prove babies put to sleep on their back are at lower risk of cot death
• demonstrate the benefits of lowering cholesterol using statins, now a standard treatment for patients at high risk of heart disease.

There are countless other examples. In recent months, a group of scientists we fund at the University of Oxford made yet another discovery about the effectiveness of statins. And researchers including our BHF Professor Keith Fox were able to prove the effectiveness of a new drug called rivaroxaban in patients with atrial fibrillation.

Data protection

We know people can be a bit worried about opening up their personal medical information. But in our recent survey we actually found that more than three quarters (79%) of people would be happy for their doctor to share some level of medical information about them with health researchers to help develop new treatments.

Often the information our researchers need doesn’t identify the person that the data come from. And our researchers are all based at UK universities and hospitals. They are subject to the same rules and regulations regarding keeping data confidential and safe as any civil servant or NHS professional. These include rules on, for example, protecting computers where confidential data can be accessed with secure passwords, and encrypting data whenever it goes off site.

Visit our Support our Science web page for more information and to download the full report.