About us

Independent Cancer Patients' Voice was started in July 2009 with a group of breast cancer patients led by Maggie Wilcox. They all had a keen interest in research and all felt strongly that they wanted to be a part of improving the outcome for future patients.


With a range of professional backgrounds and of patient experiences, most of the original members had already been involved with breast cancer charities and  the NCRI Breast Clinical Study Group.


They felt that there was a need for a patient-led organisation to bring the views and experience of cancer patients and their families and carers into the cancer research community. And so, ICPV was born – to provide a forum for learning and debate through which patients could have an effective independent voice in research.


Our members now cover over 12 tumour types and are involved in numerous cancer research and trials throughout the UK.


We believe that clinical research is improved by patients being partners with clinicians and healthcare professionals, rather than passive recipients of healthcare.

If you are interesting in joining us we have put together a short brief about being a member of ICPV. To read this please click here.

What We Do

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.


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

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© Independent Cancer Patients' Voice is a charity registered by the Charity Commission for England and Wales (no.1138456) Registered office 17 Woodbridge Street, London, EC1R 0LL. Copyright ICPV all rights reserved