As well as providing input on clinical studies, ICPV members respond to consultations on other aspects of cancer care and research, helping to ensure that the patient perspective is taken on board in all of these consultations.
Recent consultation include:
Biobanks are repositories of biological samples, physical measurements and outcome and behavioural data collected for research, clinical practice or public health monitoring. Most biobanks are established to investigate the common determinants of mortality and morbidity. This briefing updates POSTnote 180 and summarises biobank activity in the UK and the legal, ethical and practical issues.
Adobe Acrobat document [330.8 KB]
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 below.
NICE Guidelines on Familial Breast Cancer
ICPV has recently become a stakeholder for NICE. This enable us to directly comment on and proposed changes in cancer treatment.
We have just submitted our comments on the Familial Breast Cancer (Update) Guidelines. One of the proposals in this update was the recommendation to be able to offer Tamoxifen for chemoprevention for some high risk categories. This is soemthing we fully support.
The result of this consultation should be published in June 2013
Confederation of Cancer Biobanks
National Cancer Research Institute's (NCRI) Confederation of Cancer Biobanks (CCB) is a consortium of organisations based in the UK that are involved in the development, management and use of biobank resources for cancer research. It was launched in 2006 and the secretariat is provided by NCRI.
The Confederation aims to promote and disseminate a collective view on best practices for biobanks and to promote transfer of knowledge and experiences between banks.
They recently asked us to comment on some issues that affect patients.
More information on the CCB can be found at http://www.ncri.org.uk/ccb/
Clinical Research in the NHS
BUILDING A SERVICE USER LED VISION OF MEDICAL RESEARCH AND INFORMATION
This report has been co-produced by 11 services users working together as a 'roundtable.' In December 2010, an event for service users actively involved in oncology clinical studies in the UK was facilitated by GSK and subsequently this report has been drafted and amended using electronic discussion. The service users presented the report to Earl Howe, the Undersecretary of State for Health, in January 2011.
Cancer Reform Strategy
Independent Cancer Patients Voice has contributed to a review of the Cancer Reform Strategy (CRS) being conducted by Professor Sir Mike Richards following a request from the Secretary of State for Health, Andrew Lansley MP, and the Minister of State for Care Services, Paul Burstow MP. The review aims to ensure that we have the right strategy, subject to deliver improved survival rates for cancer.
Through our active Google group we circulated to our members links to the Government White Paper consultation documents.
Following a preliminary discussion on the Google group, we organised an event in late August 2010. We used the Knowledge Café model to manage the sharing of information and one of our members acted as facilitator to keep the discussion moving. Another member acted as scribe.
From this day, a draft document was prepared which also included written contributions from members who couldn't be present. The draft document was circulated and then discussed at a further meeting of our members. The final document was distilled from that final discussion and written comments on the draft.
Academy of Medical Sciences
In 2010, the Academy of Medical Sciences (AMS) was commissioned by Government to undertake an independent review of the regulation and governance of UK medical research.
We responded to a call from the AMS to respond to proposals in the Department of Health’s report on arm’s-length bodies (ALB report) with direct relevance to the regulation of medical research.
We submitted a detailed response. We welcomed the proposals for streamlining regulation and governance of research, including the reduced bureaucracy involved in gaining ethical approval for clinical trials but we were careful to draw attention to public anxiety over data protection issues as public confidence is of the utmost importance.
We underlined the need for continued enhancement and ring-fencing of funds and resources for medical research. We called for a more balanced assessment by NICE of drugs which become available through research with appropriate weighting given to the views of specialist panel members. Patients who take part in research need to know that any resulting new treatment will be fairly assessed for use in the NHS as well as being available privately.
We ended by reinforcing the importance of bodies such as the NCRI/NCRN, Local Cancer Networks, MDTs, SSGs, CPRGs, Peer Review, Cancer Action Team and the All Parliament Cancer Group. All of these groups actively encourage and facilitate patient involvement in cancer research but they need to be properly resourced. We support the implementation of the recommendations of the AMS Report.
To read the full report go to Academy of Medical Sciences
UK Clinical Trials Gateway
ICPV members have been involved in discussion during the development of the UK Clinical Trials Gateway, a new online resource providing comprehensive information about clinical trials in the UK. The Gateway is designed to help both the public and clinicians locate and contact trials. It is an important new addition to the resources available via NHS Evidence.
Professor Dame Sally C Davies, Chief Medical Officer for England, explains: “Phase 2 of the UK Clinical Trials Gateway increases transparency in research and makes it easier for patients, their doctors and carers, friends and families to see what clinical trials are taking place, what each trial is about, where it is taking place and who is running it.”
The Gateway is designed to be simple to use. An important aspect is the availability of lay summaries, making the trial information much more accessible to patients, trialists and non-technical readers. This helps the Government meet its commitment to increasing information about studies and will ensure that more patients are made aware of research that is of particular relevance to them.
Go to http://www.ukctg.nihr.ac.uk to use the UK Clinical Trials Gateway. We strongly endorse this initiative. Only 14 per cent of adult cancer patients enter into clinical trials. Research could make much faster progress if the number of patients entering trials could be increased.
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.
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.
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.