Further Reading

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.

http://www.researchinvolvement.com/

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.

 

breastcancerscreeningreview-Lancet2012.p[...]
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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

M W Lay comments on subject of Feedback[...]
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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.

http://www.ncrn.org.uk/downloads/Publications/PPI%20Impact%20report%20-%20web.pdf

 

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.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_134181

 

King's Fund

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

 

INVOLVE

A new publication from INVOLVE provides guidance and advice to researchers on public involvement in clinical trials. 

http://www.invo.org.uk/posttypepublication/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

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.

 

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News

VOICE 2016

A snapsot video of the the 2016 course is now available on YouTube VOICE2016

eCancer Videos

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.

Maggie Wilcox

Mairead MacKenzie

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. 

Voice 2016

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.

UNITE2CURE

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 

TRACERx

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.

Letter to Telegraph.pdf
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