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 case studies showing how health information is being used to save and improve lives. We have additional case studies from the following AMRC members:

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

Charity-supported patient registries

Medical research charities fund a range of data registries that collect information from people affected by medical conditions. These registries are of considerable value to the UK’s research landscape.

These registries support research that ultimately supports patient access to new medicines and treatments. From supporting basic research, by revealing more about the natural course of a disease, to helping the translation of research by supporting innovative clinical trials, registries play crucial roles. Once drugs have been licenced for use, registries can also help bring treatments to patients by supporting drug safety monitoring and the NHS commissioning processes.

We have developed a report that highlights the many ways in which charity-funded registries are important for patients.

The report is part of our work to build on the potential of charity-supported registries in the UK’s life sciences sector to ensure maximum benefit for UK health and wealth.

Public attitudes to using patient data

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

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