We involve patients in clinical research (including clinical trials, working with clinical/academic units, tissue banks etc) putting the patient perspective and helping to improve clinical research. This, we believe, leads to better recruitment to clinical trials and faster improvements in treatments and outcomes for all cancer patients. 

To enable patients to do this, we run study days where cancer patients meet academics and clinicians who work in cancer research at their centres of excellence. Our study days aim to raise the patients' level of clinical knowledge of new treatments, latest scientific developments, statistics, basic biology and to help the academics and clinicians understand the patients' perspective. The days also empower patients to speak as equals with the professionals as patient advocates. Our study days have also gained appreciation from clinicians and researchers who have found them of great value – they learn as we do –and we are mentioned in the breast clinical studies group review.

We have developed with Barts Cancer Centre a five day course - VOICE: Science for Patients Advocates. For information and reviews of the course click here 

We work within the National Cancer Research Institute (NCRI) framework to enable proper monitoring and review of our activity and value. We co-operate with UK cancer charities (some of us are members and volunteers for some of the charities), Most of our members are involved in the design and/or running of at least one clinical trial. We work as advocates at a strategic level (at the NCRI) with clinicians and clinical researchers in order to improve clinical research and outcomes for all cancer patients.

For example, we have

• Re-written patient information leaflets, influenced trial design to make it more likely patients will enrol and encouraged patients to join the trials by sharing our own experiences (see appendix 1 for our own leaflet encouraging patients to join trials)
• Changed the views of ethics committees to prevent unnecessary barriers to research (PERSEPHONE consent to translation sub studies granted)
• Influenced MREC over consent to the use of tissue (TACT reversed block on tissue being used for research)
• Supported and continue to work with Breast Cancer Now's Tissue Bank's board of management and tissue access committee
• Contributed to other clinical trials including
  • IMPORT HIGH & LOW
  • POETIC
  • iBREAST

If you are interested in joining please email us.

For more information on specific projects please click here or contact us.

To find out how we work with researchers and to contact us please click here.

Some people have been kind enough to give us feedback about involvment in research and clinical trials. We would like to share some of those kind words.

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