Patient data is also commonly referred to as health information or health records. Patient data is crucial to enable researchers to prevent, diagnose and treat disease, as well as improve patient care. Data ultimately enables researchers to make a difference to real people’s lives.

How health information can make a difference

Patient data has vast transformative potential to advance medical research and improve patient care. The responsible use of patient data has helped progress our understanding of disease and ill-health in many different ways. Research funded by charities often involves studies using patient data.

AMRC has put together some member case studies showing how health information is being used to save and improve lives.

AMRC works closely with Understanding Patient Data who are building resources to help hold better conversations about patient data. Understanding Patient Data have built up an extensive repository of case studies demonstrating the different ways in which patient data can be used to deliver better care and improve health.

Public attitudes to using patient data

A number of surveys have been conducted to evaluate the public’s attitude to using patient data including:

  • The Wellcome Trust Monitor Report, which found that 77% of the public are willing to share their anonymised medical records for the purposes of medical research.
  • Cancer Research UK and Macmillan Cancer Support commissioned Ipsos MORI to carry out a Review of Informed Choice for Cancer Registration. This review demonstrated the overwhelming support for the collection of cancer data via the Cancer Registry.

Patient Data Coalition

AMRC convenes the Patient Data Coalition to discuss current policy issues and share information related to patient data. The group comprises AMRC members as well as other membership bodies including Genetic Alliance, the Richmond Group of Charities and National Voices. The Coalition provides a useful resource to influence AMRC’s policy and to ensure the sharing of best practice.  

Find out more about the AMRC’s policy work on patient data