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 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 Campaign'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.
A snapsot video of the the 2016 course is now available on YouTube VOICE2016
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.
July 2016 Conferences
ICPV members were busy this week with two conferences. The BACR/ECMC Joint Meeting on Therapeutic Interventions for Cancer Prevention was held in Bristol July18-19. The UK Breast Cancer Research Symposium was held in London from July 22-23. Click here for more information.
UK Therapeutic Cancer Prevention Network (UKTCPN)
An update from this new group was presented to the ECMC Annual Network Meeting in May 2016. Click here to download and read.
The ICPV Science for Advocates Course will be hosted by Warwick CTU from 19th - 23rd September. See the VOICE pages for more information.
The Voice, Winter 2015-2016
The latest ICPV newsletter is now available. It has reviews of members activities, meeting attended and papers published. Go to the ICPV Publications page to download.
Call for immediate change to European Paediatric Medicine Regulation to save more lives of children and teens with cancer.
A few basic changes to European Law could speed up access to newer, kinder and potentially better drugs for more children and teenagers with cancer. Click to Sign the petition
Two years on from the start pioneering TRACERx lung cancer study. Click here For the latest news and patient views on this study.
NCRI Conference 2015, Liverpool
ICPV members will be joining cancer researchers from 1-4 Nov, 2015. Click here for more information.
ICPV Summer School 2015
Qualitative Research Training Course at Warwick. Click here for a review of the session.
NCIN, Belfast, June 2015
Several ICPV members attended and spoke at this years conference. Click here for more.
AACR Conference, Philadelphia, April 2015
ICPV Member Pat Fairbrother joined US advocates at this year's conference. Read her review of the event here.
Cancer Drugs Fund
Today (19 Jan 2015) The Telegraph has published a letter from ICPV & fourteen other charities on the current CDF situation. Go to our Facebook or Twitter page for Telelgraph weblink or click below for the letter.