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
- POETIC
- iBREAST
If you are interested in joining please email us.
For more information on specific projects please click here or contact us.
Information for Researchers
To find out how we work with researchers and to contact us please click here.
Testimonials
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.
News
VOICE 2020 - Science for Patient Advocates
The next VOICE Course will be run from 31 Aug to 5 Sept 2020. Click here for more information.
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.
Warwick Clinical Trials
Course
12 members of ICPV attended a residential Clinical Trials Course at the
University of Warwick from 17th to 19th April 2018. The course was run by Professor Janet Dunn and covered the different types of studies undertaken; consent; trial design; statistics and bringing a
drug to market. One of the highlights of the course was a visit to the West Midlands Surgical Training Centre where delegates had the privilege of seeing real body parts and having basic anatomy
explained to them by the team. The delegates would like to thank Professor Janet Dunn for her outstanding enthusiasm and for her generous hospitality.
Open letter calling on Government to prioritise interests of cancer patients in Brexit negotiations
ICPV have come together with 18 other cancer charities to put our names to an open letter to Government. We want Government to prioritise seeking continued alignment with the EU drug licensing
process and Clinical Trials Regulation after Brexit. It is hoped this letter will be published in the national press in the near future.
See below to read.
2017 Summer School
The 2017 ICPV Summer School was held over two days in June at Stirling University. The theme of the event was Cancer Survivorship and Living Well Cancer. Click below for details of the course. More details.
VOICE 2016
A snapsot video of the the 2016 course is now available on YouTube VOICE2016
eCancer Videos
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.
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