Patient data refers to health-related information about patients that is created or used as part of their NHS care. The use of patient data is vital for medical research and has the potential to deliver enormous health benefits to patients. 

Health and medical research charities in the UK fund a significant amount of research. In these studies, researchers rely on access and use of patient data to better understand, diagnose and treat disease, as well as improve patient care. Patient data ultimately enables researchers to make a difference to 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

Patient registries are standardised collections of data about patients that are usually disease specific. 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 and can make a significant impact across the research process, ultimately resulting in accelerated 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.

AMRC published a report ‘Saving lives with patient data registries'. The report showcases innovative registries underway across the sector and illustrates the benefits these have delivered to patients and the medical research sector. The report aims 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.

The report was published as part of our wider work on patient data and data-driven technologies. 

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