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
Increasing access to patient data for
The NHS is currently engaging the public to
explain how data from our GP records will be collected in the
future. Sharing data for research is something that we know that
people support - 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.
We believe it is important that people
understand the benefits of sharing their data for research, which
is why we have joined with other health charities to help inform
the public - visit patientrecords.org.uk for
We also know from surveying the researchers we
fund that many are finding it difficult to access
the patient data they need for research.
We think the Westminster Government should
help medical researchers by:
- 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.
For more information, read our policy
statement or email us at firstname.lastname@example.org