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.
It is with great sadness that ICPV has to announce that we have lost our founder, our inspiration and the reason we do what we do.
Maggie Wilcox died on Thursday 9 December 2021
The work she started will continue and we will celebrate her achievements.
Our Twitter and Facebook pages are full of comments and on her achievements, her passion and her fun.
Click here to see Maggie in action talking about biobanking and its importance to research and to patients. Why Biobanking is Important
"Maggie was an incredible force of nature & a huge inspiration. All of us who were 'Maggied' at one time or another will never forget her or her amazing legacy in the form of ICPV"
"Maggie’s legacy lives on in ICPV's wonderful work ensuring research focuses on what matters most to cancer patients and helping clinicians and researchers understand the patient’s perspective."
"Maggie will always be in our hearts. She helped us focus on working together to improve cancer treatments for those with cancer. That needs to be her legacy."
"Maggie was a fearless force for good in cancer research and patient advocacy - she will be hugely missed."
She was a truly inspirational and through her guidance, support and motivational conversations has enabled influence and impact in a wide range of health and care areas, possible far more than she realised.
Through our combined actions Maggie’s work will live on."
"She made it her business to introduce herself to all those who might help her and us in making a difference. It used to strike me that there couldn't be many who didn't already know Maggie. If they didn't know her then they would certainly know of her. I cannot begin to remember the number of times she would notice a person of interest and take me or others to them for an introduction. She would sow the seeds for future collaborative work and she absolutely thrived on playing a pivotal part in nurturing these beginnings. She was an exceptionally warm and caring person who would notice that an ICPV member had been 'quiet' for a while and would want to gently check that all was well and if any support was needed."
"That is such sad news, I am so sorry. She was such a tremendous person, and such a huge supporter. All that we have achieved is thanks to ICPV. You have all been so kind and patient with us and your suggestions and input over the last decade have been central to our success.
She was also a friend, a wonderful and kind human being. She will be terribly missed by us all,
Thank you for all that you do and working with us, we must carry on the work in her name."
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.
Help us raise funds when you shop online...if you've not already registered,
give it a try at Easyfundraising
Check out our Facebook Page for news and activities.
OPTIMA is a patient driven clinical study for people with hormone sensitive early breast cancer.
On the 25th March we held an interactive talk and discussion on immunology.
The talk was given by Dr Edd James, Cancer Immunologist from the university of Southampton. The tallk is now available on YouTube - click here to listen.
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.
Save the planet and donate to ICPV - send ecards go tour Fundraising page for mor 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.