We have recently produced our second review. This report covers our achievments since our first review was published in 2011.

We hope it will give you a more indepth knowledge to who ICPV are, what ICPV do and why we do it.


ICPV Review 2014
Adobe Acrobat document [3.8 MB]
ICPV Review 2011
Adobe Acrobat document [2.4 MB]

PPI Leaflets


We have prepared this leaflet encouraging patients to ask about clinical trials, donation of tissue for research and involvement in local cancer network service development and research read more


Members' Publications


Our members occasional contribute to journal publications read more


NCRI Conference 2011


For the NCRI Conference in Liverpool in November 2011 we had an abstract accepted "Independent Cancer Patients' Voice - speaking clearly and being heard" and presented a poster "Continuing the Conversation"             

Independent Cancer Patients' Voice - speaking clearly and being heard
Abstract NCRI 2011.pdf
Adobe Acrobat document [34.6 KB]
Continuing the Conversation
Adobe Acrobat document [1.5 MB]


AllTrials logo


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.

VOICE 2014

The ICPV VOICE course was   held at Barts Cancer Institute from 1-5 Sept. Once again is was a resounding success. Click here for more details, pictures and a review of the week.

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:

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.

ABPI Conference, 10 April 2014

For the first time ICPV had a stand at the Association of the British Pharmaceutical Industry (ABPI) conference. This was a great networking opportunity and a chance to promote ICPV.

ICPV Members Day, 4 April 2014

The 2014 members day was held at the Queen Elizabeth Hospital Birmingham. We had talks a number of new trials and studied and an opportunity for new members to discover what ICPV do and for old members to exchange news. Click here for more information. 

EORTC Cancer Survivorship Summit, Jan 2014

CSG and ICPV member Carolyn Morris attended this years event in Brussels. Click here for more information and to read her report.

San Antonio Breast Cancer Symposium, 2013

ICPV member Pat Fairbrother was awarded an Alamo Scholarship to attend SABCS in Dec. Click here to read her Hot Topic report.

Biobank Quality Standards

A number of ICPV members were involved in the Confederation of Cancer Biobanks (CCB) Harmonisation and Benchmarking Project that will lead to development of an accreditation scheme for biobanks. Two related standards, for quality management and data, have been created. Click here to download and read more about the CCB. 

CCB Newsletter

The latest edition of the CCB newsletter has an item by Maggie Wilcox and Derek Stewart on patient involvement in biobanking. See the full article here

Using Cells & Tissue for Research

ICPV is working with trainee pathologists to promote awareness of the use of tissue in research with the aim of increasing tissue donation. As a first step we have produced a questionnaire for professionals and public. The form can be downloaded below. 

ICPV Survey-Tissue Use
ICPV Survey regarding Consent to Tissue [...]
Microsoft Word document [2.0 MB]

The Enemy Within: 50 years of fighting cancer

Vivienne Parry OBE tells the incredible story of our fight against cancer over the last 50 years. Through the eyes of scientists, researchers and patients, we see how far we have come and how far we have to go. Go to the link below to watch this fascinating film. The film is over 1hour long, but clicking the menu will give you the chance to dip into sections.

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