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.
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
If you are interested in joining please email us.
Information for Researchers
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.
Long Term Survivor Study
Continuum Life Sciences are looking for volunteers who have survived aggressive, difficult to treat cancer against all odds to take part in their Long-Term Survivor of Cancer Study. For more information and how you can join go to their website.
Save the planet and donate to ICPV - send ecards go tour Fundraising page for mor information.
VOICE 2020 - Science for Patient Advocates - cancelled
Due to COVID-10 we have had to postpone the course for 2020. Click here for more information.
FAST-Forward Trial Results
A one-week course of radiotherapy in fewer but larger daily doses was found to be as safe and effective as standard three-week therapy for women following surgery for early stage breast cancer. Trial results now published. Two ICPV members provided the PPI for this key trial. Full details can be found on the ICR Website.
ICPV Brighton Summer School Aug 2019
ICPV was once again hosted by SHORE-C at the University of Sussex. Click here for more info.
San Antonio Breast Cancer Symposium, 2018
ICPV member Pat Fairbrother attended this event on an Alamo Foundation Scholarship. Click here to read her review.
Gap Analysis in Breast Surgery Published
The 2013 Breast Cancer Campaign gap analysis established breast cancer research priorities without a specific focus on surgical research or the role of surgeons on breast cancer research. This Review aims to identify opportunities and priorities for research in breast surgery to complement the 2013 gap analysis. Click here for more information
ICPV Review 2018
We have at last published a new edition of our review. This was achieved by a grant from Novartis. Click here for more information.
Award for ICPV Member
Many congratulations to ICPV member Margaret Grayson. On 21 April 2018 she received the Iris Colvin Lifetime Achievement Award for Health, presented by the Women’s Forum of Northern Ireland. This is very well deserved for her tireless work in furthering cancer research especially in Northern Ireland.
At the BACR/ECMC conference in July Maggie Wilcox and Mairead Mackenzie were persuaded to speak to the camera. Maggie gave a background to ICPV and our aims and objectives. While Mairead focused on her specific interests and activities. To view follow the links below.