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
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
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
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
- what medication you take
- conditions you have been diagnosed with
- when and why you are admitted to
- 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
- demonstrate the benefits of lowering cholesterol using statins,
now a standard treatment for patients at high risk of heart
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.
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