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.

We invite patients, carers and others affected by cancer (also known as ‘consumers’) to participate in all aspects of NCRI’s work. At any one time, up to one hundred consumers will be involved in our activities; making contributions to the setting of our strategy and, through involvement in NCRI activities, shaping actions at national level as experts in the experience of cancer.

We also provide bursaries for consumers to attend the annual NCRI Cancer Conference. This is a great opportunity for people who are involved in cancer research to learn more about the latest scientific progress, network with the wider research community and use the knowledge and experience gained to further inform other activities they’re involved in.

» Bursaries for patients and carers (NCRI Cancer Conference website)

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 Forum

All consumers involved in the NCRI are members of the NCRI Consumer Forum. The forum aims to foster a vibrant and collaborative community to work with NCRI as partners in cancer research; exchanging knowledge and expertise in a coordinated way. The NCRI Consumer Forum consists of both core and affiliate members; core members who currently sit on an NCRI group or committee and affiliate members who have specifically been invited because of their previous active involvement in an NCRI group or committee.

Many forum members also act as patient representatives in their local area or for other national bodies such as the Department of Health or Public Health England therefore providing a link across the UK research community in cancer and beyond.

» Consumer Forum remit (PDF, 2015)

» Consumer Forum Steering Group remit (PDF, 2015)

 

NCRI Consumer Forum resource library

Key information for NCRI Consumer Forum members is held in this library. It includes resources that members will need to help them carry out their roles in NCRI activities. It is also  a platform for them to showcase consumer involvement in cancer research – most of the resources have been developed by consumers themselves.

» NCRI Consumer Forum resource library (internal webpage)

Contact the NCRI Consumer Forum

» Email the Consumer Forum on: consumer@ncri.org.uk