Patient data in medical research

Patient notes

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 patients.

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 information.

Increasing access to patient data for research

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 for more information.

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 [email protected].