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.
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
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.
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.
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.