Welcome to Independent Cancer Patients' Voice
Independent Cancer Patients' Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy.
Our aim is to improve existing treatments for every cancer patient and develop new treatments by bringing the patients’ voice into clinical research.
We do this by:
1.educating, supporting and mentoring patients so that they can have an equal voice with clinicians and researchers and
2.bringing the patients’ voice to clinicians and researchers – i.e. by being patient advocates in clinical research so that this research takes into account the patients’ (and carers, relatives etc) viewpoint to improve outcomes (cancer mortality, morbidity, quality of life) for all people affected by cancer (patients, relatives, carers).
We are informed and committed patient advocates and we can play an increasingly effective role in educating both potential patients and professional staff as to the benefits of clinical trials and research.
The core members of our group are located throughout the UK and we have a good mix of business, healthcare and scientific knowledge and experience. We also have a strong network of individuals and groups of cancer (and non-cancer) patients to help us to determine the research questions that cancer patients would like answered and to raise the profile of clinical trials among the patient community and thus increase accrual as well as improve outcomes for future patients.
We have an active online discussion group and members where members can exchange views and review research papers.
We have the full support of the professional members of the NCRI Breast Clinical Study Group (and from many research centres) with a keen interest in teaching us at study days on the science/biology/genetics of cancer and the development of new treatments.
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. Read more
We have produced two leaflets encouraging patients to ask about clinical trials, donation of tissue for research and involvement in local cancer network service development and research, with editable versions available for the addition of local contact information. Click here to download.
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Check out our Facebook Page for news and activities.
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.
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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.