Involving patients and carers in research

Cancer research is only worthwhile if it makes a real difference to people and families – we need better treatments for patients, with fewer side effects. We also need better ways of preventing people from getting cancer, for example by helping them to stop smoking and to have healthier lifestyles. Patients contribute to research by participating directly in clinical studies, but they and their carers and families can also be involved in other ways.

NCRI invites patients, carers and others affected by cancer to participate in the work of the NCRI. At any one time, up to one hundred ‘lay’ people will be involved in our activities, making contributions to the setting of strategy and shaping actions at national level as experts in the experience of cancer.

We encourage networking and the sharing of experience among ‘lay’ people, also known as ‘consumers’. Some also participate as patient representatives in their local area or for other national bodies such as the Department of Health or Public Health England. We also provides bursaries for consumers to participate in the annual NCRI Cancer Conference.

Please note: NCRI does not provide information or advice for patients about living with cancer or participating in trials. Such information is available on websites operated by some of our Partners, for example Cancer Research UK and Macmillan Cancer Support.

The UK Clinical Trials Gateway specifically provides easy to understand information about clinical research trials running in the UK, and is designed to enable patients and their clinicians to locate and contact trials of interest.

» Cancer information from Cancer Research UK (external website)
» Cancer information from Macmillan Cancer Support (external website)
» Clinical trials running in the UK. Information from the UK Clinical Trials Gateway (external website)

The NCRI Consumer Liaison Group

The NCRI Consumer Liaison Group (CLG) is a forum for patients, carers and others affected by cancer (also known as ‘consumers’) that participate in the work of the NCRI and the NIHR CRN Cancer. The Group meets three times a year to share learnings and provide feedback on improving the quality and value of cancer research for patient benefit. The NCRI CLG is administered by the NIHR CRN Cancer.

» Consumer Liaison Group webpage (NIHR CRN Cancer website)

» Consumer related abstracts from the 2014 NCRI Cancer Conference

» Email the Consumer Liaison Group