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.
If you're interested in our work and would like to support us, read about us and the projects we've contributed to in the past.
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.
Multiple Biopsies Forum, Feb 2015
ICPV joined with the ICR to discuss the issues around the increasing need for multiple biospies in research. Click here for the summary of the meeting.
The ICPV VOICE course will be held at Barts Cancer Institute from 1-5 Sept. Click here for information and contact details.
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.
ICPV Review 2014
Our latest review is now available. Click here to read more.
ASCO, Boston, 2014
Prof Lesley Fallowfield presented a poster for the AVALPROFS study ASCO. The study was well received at the event especially by patients. Click here to see the poster and find our more about the study.
ICPV Summer School 2014
The ICPV summer school was held in Brighton on Friday 4th and Saturday 5th July 2014.
Click here for speaker presentations and audience reviews.
James Lind Alliance & NIAA - Survey
The Anaesthesia and Perioperative Care Priority Setting Partnership aims to identify the most important research areas to improve the physical and mental well-being of patients attending hospital for any operation or procedure requiring any type of anaesthetic. A short online survey (5-10 minutes) is open until the end of July for patients, carers and clinicians to contribute their ideas about unanswered research questions related to this topic. It is a unique opportunity to have your say and participate in this important and wide-ranging partnership that will have a real impact on research in hospital care. For further information and access to the survey please go to: www.niaa.org.uk/PSP_Survey#pt
Genomics England, 24 March 2014
A group of patients advocates from ICPV, NCRI, Cancer52, and Cancer of Unknown Primary recently held a discussion with Genomics England to help clarify the current developments and look at ways of raising awareness of the need for tissue and data. A summary of the discussion can be downloaded here.