Research Involvement and Engagement
Research Involvement and Engagement is an interdisciplinary, health and social care journal focussing on patient and wider involvement and engagement in research, at all stages. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users.
Breast Screening Review, October 2012
An independent panel has published the results of a review of the UK’s breast screening programmes.
The review was set up after concerns were raised that women were being told a lot about the benefits of screening and not enough about the possible harm.
With different experts speaking out both for and against breast screening, a public review was needed to help women understand the pros and cons of screening. The Government and Cancer Research UK asked a world-renowned epidemiologist, Professor Sir Michael Marmot, to chair an independent panel to review all the available evidence.
The panel’s aim was to reach an agreement on the balance of breast screening’s pros and cons. The decision for any individual woman is a personal one and not necessarily an easy one; we have tried to set out the evidence as clearly as we can, so that all women can make the decision that is right for them.
Maggie Wilcox was a member of this panel.
Assessing Public Attitudes to Health Related Findings in Research
During research involving human participants, researchers may find something that has direct significance for a participant’s health; for example, revealing an undiagnosed disease or an increased risk of illness. There is limited understanding of public attitudes towards these health related findings, and the Wellcome Trust and Medical Research Council commissioned research to address this evidence gap. 'Assessing Public Attitudes to Health Related Findings in Research' reports the findings of this research, which included qualitative extended focus groups and a large scale quantitative survey conducted by Opinion Leader in the UK in 2011/12.
The full report can be downloaded here - http://www.wellcome.ac.uk/About-us/Publications/Reports/Public-engagement/WTVM055197.htm
See below for a summary and Lay Comments on Incidental Findings
Impact of Patient, Carer and Public Involvement in Cancer Research
This report from NCRN and NCRI highlights the impact of patient, carer and public involvement (PPI) in cancer research. For researchers and clinicians it provides information about how patient and public involvement can contribute to studies and to clinical trials. For patients and carers considering involvement, it shows the diversity and value of the opportunities open to them at national, regional and local levels.
The power of information: putting all of us in control of the health and care information we need
This information strategy from the Department of Health sets a ten-year framework for transforming information for the NHS, public health and social care.
Many doctors aspire to excellence in diagnosing disease. Far fewer, unfortunately, aspire to the same standards of excellence in diagnosing patients’ preferences for their care. Because doctors are rarely made aware of an erroneous preference diagnosis, it could be called ‘the silent misdiagnosis’. Misdiagnosing patients’ preferences may be less obvious than misdiagnosing disease, but the consequences for the patient can be just as severe.
Patients’ preferences matter: stop the silent misdiagnosis outlines the scale of the problem. Full report can be downloaded at - http://www.kingsfund.org.uk/publications/patients_preferences.html
A new publication from INVOLVE provides guidance and advice to researchers on public involvement in clinical trials.
Cancer Research UK
CRUK's recommendations to reform the clinical trials directive and other policy documents. http://info.cancerresearchuk.org/publicpolicy/workingwithgovernment/europe/
A patient survey in response to a government consultation on Value Based Pricing. In 2014 the Pharmaceutical Price Regulation Scheme, the current mechanism by which the NHS sets the price for all new drugs, will be replaced by a "value-based pricing" scheme. This will impact on the way in which treatments are assessed for use on the NHS. http://scienceblog.cancerresearchuk.org/wp-content/uploads/2011/12/CR-UK-Patients-Views-on-VBP.pdf
Listening is lynchpin of good patient care
Speaking to an audience of health professionals paying tribute to the work of the late Dr Ann McPherson, RCGP chair Dr Clare Gerada said excellent communication and listening skills are the values on which general practice and the wider NHS were built.
She commended Dr McPherson, a GP in Oxford, for fighting for what she believed in and for standing up and giving patients a voice – particularly through her work with the Healthtalkonline website which helps patients share their health concerns. Click here to read the full text of her talk. http://www.rcgp.org.uk/PDF/Ann%20McPherson%20presentation%20-%208%20May.pdf
Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognised as the highest standard in evidence-based health care. They investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting. They are published online in The Cochrane Library.
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.