"Liked the brochure. It summarises the considerable achievements of ICPV very nicely. The Group has been very successful and already provides important, constructive and knowledgeable input into the research genda.You should be very proud of the first 1-2 years. Keep up the mportant work.
Professor Robert Coleman MD, FRCP, FRCPE
Yorkshire Cancer Research Professor of Medical Oncology and Associate Director of the National Cancer Research Network (NCRN), Academic Unit of Clinical ncology, Weston Park Hospital, Sheffield
"Much of what we do in the field of translational research has the primary objective of improving patient care. Clearly, to do this requires both the support of and interaction with patients. IPCV provides an informed and positive input into research in the clinical setting. By influencing both scientific processes and the practical steps required to facilitate patient oriented research ICPV ensures that researchers can focus their work on what is truly important to the patient."
John Bartlett, Professor of Molecular Pathology, Endocrine Cancer Group, University of Edinburgh
"I am delighted to see that ICPV has reached its first birthday. It is extraordinary that anyone involved with cancer research could have even contemplated doing so without the opinions of the people most affected namely patients. I for one have valued the intelligent, thoughtful, and well-argued input of many ICPV members. Thanks to you all and many congratulations.
Please keep up the good work keeping us all grounded and focussed on what matters."
Professor Lesley Fallowfield, Director Sussex Psychosocial Oncology Group
"ICPV is a very professional and well organised group. The group has organised a number of successful discussion forums involving Clinicians, Researchers, Patients and other stakeholders. At the event I attended, there were very open and constructive discussions about potential future research proposals ensuring that patients' thoughts and ideas were aired and considered in earnest."
Julia Simister, Research Network Manager Royal Surrey County Hospital NHS Trust
"ICPV provides an excellent and much needed forum for the cancer patient to voice their opinion on UK medical research. As a breast cancer researcher I believe engagement with patient advocates really helps focus the reasons behind why we are doing research and it was a pleasure for me to host the first ICPV study day."
Dr Valerie Speirs, Reader in Cellular Pathology, Breast Research Group, Leeds Institute of Molecular Medicine and St James's University Hospital
"As a Cancer Professional working in the field of Breast Cancer Clinical Trials, the members of ICPV have been invaluable in helping us to understand how we should design the next generation of trials in order to be successful. This means patient and lay public involvement at an early stage and ICPV supports its members to do this important work"
Professor Peter Barrett-Lee, Consultant Clinical Oncologist, and Interim Medical Director, Academic Breast Unit Velindre Cancer Centre Cardiff
"I have been engaging with ICPV over the last two years. The experience has been very refreshing. ICPV is very well organised with a range of very knowledgeable and open minded membership who are clearly committed to engaging with the breast cancer research community to provide not only support to breast cancer research but, more important, providing a lively channel for helping design studies to incorporate the needs and views of patients. The enthusiasm and commitment of the organisation is a great help to researchers battling through the complex process of clinical trial development. This group is now recognised as a key player in shaping new clinical trials in breast cancer in the UK."
Daniel Rea, Senior Lecturer in Medical Oncology, CRUK Clinical Trials Unit, School of Cancer Sciences, University of Birmingham
"I am personally very grateful for the ICPV; my experience has been that they are a very proactive group of people who have made it their business to keep abreast of new work within the field of cancer research and as such are a huge asset to the development of such work as they are in a position to make it clinically relevant to the people who count - the patients!
Please keep up the good work!"
Jacqui Stringer, Clinical Lead for Supportive Care Services, The Christie NHS Foundation Trust
"ICPV has worked closely with Warwick CTU to develop a patient booklet and clinic poster for the Persephone Herceptin duration trial which seeks to recruit patients into the standard 12 months Herceptin vs a reduced duration of 6 months. Previously the group successfully challenged the ethics committee decision to split the consent form into 5 separate documents which considerably undermined recruitment into the trial. The ICPV continues to improve clinical trial information and processes, including 'bureaucracy busting' for tissue collection and consent. Academic-led (i.e. non-commercial) research questions are equally important to improve quality of life and reduce toxicity as compared to the pharmaceutical trials comparing new drugs.
I think it's really helpful for the academic community to have active contacts with a group like this which strives to be independent. I have really benefited from the involvement of members of this group when developing the question and design of our more pragmatic breast cancer trials. We need more of you to keep us on the right track."
Professor Janet Dunn, Deputy Director of Warwick Clinical Trials Unit, Head of Cancer Trials, University of Warwick
"ICPV is a group of people from a broad background who have in common the experience of being diagnosed and treated for cancer. With this experience they provide an important and constructive contribution in many settings, on the clarity and relevance of written information, on the acceptability or otherwise of clinical studies, on the need for better information and improved understanding in different situations. ICPV alert the medical profession to the patient perspective and as such provide a critical contribution to the improvement of medical research and patient care."
Louise Jones, Professor of Pathology, Institute of Cancer, Barts and the London Medical School
"Independent Cancer Patients' Voice is making a major contribution to the design and implementation of clinical cancer research within the UK. From personal experience, I know that their advocates have played a most important part in the current success of the UK preoperative POETIC trial in early breast cancer and their advice was crucial in influencing decisions made both by funding bodies and ethical committees. All power to them!"
Professor Ian Smith, Consultant Medical Oncologist, Professor of Cancer Medicine, The Royal Marsden and the Institute of Cancer Research.
"Before ICPV the involvement of patient advocates in designing clinical trials was a rather hit and miss affair. It was not at all unusual for cancer trials to be written with no input from patients at all. ICPV members are fully involved in the design of our current breast cancer trial, advising on all issues from acceptable terminology in patient information sheets to actual trial design, They are an integral part of the team and their support and enthusiasm benefits both the clinicians struggling to design the 'right' trial and the patients who will be participants in them. They have harnessed a huge untapped resource and UK cancer trialists are very pleased to have a formal route for involving patient expertise."
Adele Francis, Consultant Surgeon & Honorary Senior Lecturer, Surgical Oncology, University Hospital Birmingham
"ICPV is an important addition to the chorus of voices in cancer research and activism, maintaining as it does its grass roots character and focus on advocacy, undiluted by the wider political
agendas often associated with larger patient and research-focused organisations. It follows the pattern of working closely with the medical profession, but in the spirit of mutual
Two ICPV meetings that I have attended have provided interesting, and I believe successful examples of a productive interplay between biomedical researchers and active patients and participants in research."
Dr Norma Morris, Research Fellow, Dept of Science & Technology Studies, UCL
"In the UK one in every six cancer patients is involved in research, representing 42,000 cancer patients per year, the highest level in the world. The research that these patients are involved in has supported many breakthroughs in cancer treatment and service design. Cancer patient engagement across all aspects of the process, from study design through to patient recruitment, dissemination of results and uptake of new interventions, is an essential component of cancer research. Cancer Research UK highly values the important work of Independent Cancer Patients' Voice in enabling valuable engagement between patients and cancer researchers."
Kate Law, Director of Clinical Research, Cancer Research UK
"Although Independent Cancer Patients' Voice is a relatively recent arrival in dealing with our national cancer epidemic, ICPV has already contributed significantly to the development of clinical studies, supported (and chaired!) national clinical trials meetings and eloquently added a patient voice to several cancer related activities in the UK. Offering useful advice from a common sense perspective ICPV has already made us think more deeply about how we look after those who have, or have survived, cancer. I for one welcome the involvement of ICPV in thinking about how to move forward against cancer. "
Alastair M Thompson, Professor of Surgical Oncology, University of Dundee and Chairman, NCRI Breast Clinical Studies Group
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.