Patient data in medical research
Our medical records hold information that can help
researchers make vital new life-saving discoveries.
Researchers are finding it difficult to access this information
so we think more needs to be done to make it easier to use
data from our medical records to provide benefits to
Researchers use patient data in a number of
ways, from finding common factors across a large number of people
that can help predict disease, to finding people that could be
asked to take part in a research study. Of course, it is important
that we have the right safeguards to respect
patient confidentiality while enabling research to flourish.
Our report, Clear and Present Data, shows how
the information contained in our medical records has helped
us better understand the factors that lead to heart and circulatory disease – and sets out
what needs to happen to make sure we can all benefit from this
Barriers to access
In polling carried out in 2012, we found that
79 per cent of the UK public are happy to share some form of their
patient records with researchers. However, over half of the
BHF-funded researchers we surveyed expressed some or considerable
difficulty in accessing patient data for
The problems researchers face around patient
data include the numerous number of organisations involved in
approving access, a lack of clarity around the law for accessing
data, and the complexity involved for using
records to identify potential research participants.
We think the UK Government should help medical
- creating a single approval process to access
patient data for research
- simplifying how researchers can identify
potential research patients using patient records, and
- providing a clear guide to the law on how
researchers can access patient data.
The UK Government will be looking at changes
to make it easier to do this kind of research,
including influencing changes to European law. We'll be working to
make the views of the researchers we fund known.
For more information, read our policy
statement, our blog on the
AMRC website, or email us at firstname.lastname@example.org