Patient data in research

Patient data is extremely valuable for biomedical and healthcare research. But we will only be able to unlock the value of that data if concerns about patient privacy are taken seriously. 

The public, healthcare professionals and researchers must have confidence that access to patient data is appropriately managed.

How do researchers use patient records?

Researchers can use patient records to:

  • study the effectiveness of treatments and interventions
  • find suitable people to take part in clinical trials
  • understand more about the factors that affect health and disease.

Our position

We want to ensure that where patient data is used, it’s managed safely and securely while ensuring that the confidentiality of patients is respected. 

What we’re doing

Timeline of key dates

June 2009

August 2012

January 2014

February 2014

May 2014

July 2014

January 2015

July 2015

December 2015

September 2015

Dame Fiona Caldicott is tasked with developing clear guidelines for the protection of personal data, including making recommendations for an opt-out system for patients.

March 2016

April 2016

July 2016

More information

Contact us

If you have any questions, contact Natalie Banner:


Data sharing

Sharing data helps researchers to access and build on new information and knowledge.

Influencing policy

Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.

Reports and consultations

Read our policy reports and responses to major consultations.