Consultations

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:

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.