ICPV members may be taking part in conferences by giving presentations about their experiences or they may be there to learn and to engage in debate with clinicians and researchers. Conferences represent an important opportunity for us to raise awareness of the work of ICPV and the assistance that we can provide in research design and conduct. Our members are active participants in Q and A sessions at conferences.
Where possible, members write-up reports of the conferences they attend, to be shared with other members through our web site and active Google group.
UK Breast Cancer Research Symposium, London, July 2016
Across a two day programme, this conference will bring together the breast cancer research community to discuss, debate and explore key problems in the breast cancer research field from both a clinical and research perspective. ICPV Chair Adrienne Morgan presented a poster on the benefits of patient involvement in Research. Click here to download the poster.
BACR & ECMC Joint Meeting - Therapeutic Interventions for Cancer Prevention- The Way Forward, Bristol, July 2016
This was the first meeting of the new ECMC - UK Therapeutic Cancer Prevention Network.
This multidisciplinary meeting addressed the enormous opportunities and some of the challenges faced by researchers in the field of therapeutic cancer prevention. It drew on examples spanning from ‘bench to bedside’ and beyond, to highlight what advances in basic and translational science can bring to the prevention trials of the future.
- Dietary interventions for cancer prevention
- Aspirin – what else do we need to know?
- Overcoming barriers to prevention and the way ahead
- Drug repurposing – what next?
- New approaches and recent advances
As a member of the UKTCPN Steering Group ICPV member Mairead MacKenzie spoke about the issues regarding PPI in this challenging area of research. Click here to read her presentation.
ECMC Annual Network Meeting, London, May 2016
Members of ICPV and the ECMC PPI Group attended the annual meeting held at the King's Fund in London.
The day started with a series of papers celebrating the work of the ECMC network. This was followed by an extended lunch break to give everyone a chance to network and discuss current research.
The afternoon session was split up to encourage debate on some key topics. These included Research Biopsies, HRA Approvals, Precision Medicine and Adaptive Design.
The day was an excellent overview of the work of the ECMC and it was good to see the PPI group at its centre.
For a flavour of the day click here to read the latest update from the UK Therapeutic Cancer Prevention Network (UKTCPN)
Britain Against Cancer, London, December 2015
Britain Against Cancer, hosted by the All Party Parliamentary Group on Cancer (APPGC), is one of the largest conferences of its kind in the UK and is an annual fixture in the Westminster calendar.
Click here to read ICPV member Kat Randle's review of the day.
National Cancer Research Institute(NCRI) Confederation of Cancer Biobanks (CCB) Annual General Meeting, Nottingham, June 2015
The meeting was attended by professionals from academia, research, health care professionals, and significant attendance from ICPV and other patient groups. There were a few trade stands which were well attended and covered areas such as informatics and sample collection and storage. Biobanks exist to facilitate research which is important for the progression of stratified medicine. Biobank work is supported by a number of organisations, including the British Heart Foundation.
Click here to read ICPV member Kat Randle's overview of the day.
Cancer Outcomes Conference, NCIN, Belfast, June 2015
ICPV member Margaret Grayson highlighted the need for good data and promoted the Dragon's Den. To quote Richard Stephens Margaret's presentation was "For me it was just a perfect example of an Independent Cancer Patient's Voice being thoughtful, being rational, and being heard." Click here to read the text.
AACR Annual Meeting, Philadelphia, April 2015
The American Association for Cancer Research (AACR) is the world’s first and largest scientific organization focused on every aspect of high-quality, innovative cancer research, from bench to bedside. The mission of the AACR and its more than 35,000 members in all fifty states and around the world is to prevent and cure cancer through research, education, communication, and collaboration. Our members include basic, translational and clinical researchers, physicianscientists, patient advocates and other leaders in the cancer research and care community”.
Multiple Biopsies Forum, ICR, London, February 2015
Patient advocate groups from ICPV, CPRG, the Royal Marsden joined with staff from the Institute of Cancer Research and the Royal marsden to debate the issues around the increasing need for multiple research biopsies and the implications this might have for trial recruitment. A summary of this informative and enjoyable day can be found on our download section.
European CanCer Organisation and British Association of Surgical Oncology, Liverpool, October 2014
ICPV Members attended this event for the first time. It proved an excellent meeting point to interact with surgeons. Jacqui Gath was sponsored to attedn this event and her report of the conference can be read here.
European Organisation for the Research & Treatment of Cancer (EORTC) 1st Survivorship Summit, Brussels, January 2014
EORTC is an independent research organization dedicated to investigator driven clinical trials and translational research and has not only an impressive track record in establishing ‘state-of-the-art’ treatments but also in ensuring that new cancer agents are developed and tested efficiently with the aim of minimizing delays between laboratory discovery and their therapeutic benefit for patients.
Over the years, the EORTC has adapted its structure and expanded its premises to respond to the challenges of modern cancer clinical and translational research.
In 2013 they developed a survivorship task force and in January 2014 they ran their first summit.
Carolyn Morris who sits Psychosocial Oncology CSG was offered a place at this event. Click here to read her fascinating account of the summit and an insight into how things are done in Europe.
San Antonio Breast Cancer Sympoium, December 2013
Pat Fairbrother was awarded an Alamo Breast Cancer Foundation bursary to attend the 2013 SABCS. The foundation provide scholarships each year to breast cancer advocates from around the world to
enable them to attend the Symposium. The advocates have their own programme organised around the main event. They are given briefings every evening by key speakers to review and question the day's
topics and breakfast sessions to discuss key issues.
Each advocate is given a topic to follow throughout the conference; once home they had to write up this topic for publication in the annual Alamo Breast Cancer Foundation Hot Topics DVD. (see our conference download page for her Hot Topic report which covered psychosocial and survivorship issues)
Britain Against Cancer, London 10 December 2013
As stakeholders in the All Party Parliamentary Group (APPG) ICPV held a fringe meeting at this event. "Bank Your Tissue" was a debate cover tissue donation.
For a review of this and the rest of the day by ICPV member Lesley Turner click here.
NCRI Conference 2013
This years event was a first for ICPV. As well as having two posters we hosted a parallel session "The Issues around Tissues". For this session we had 5 speakers and a panel discussion chaired by Bridget Wilkins, St Thomas' Hospital. We focused on the research needs for tissue and blood, problems with consent and the complexities of carrying out research across borders.
We received excellent feedback at the time - Richard Stephens, Chair, NCRI Consumer Liason Group said
"I was both impressed and educated by the Issue With Tissue session at NCRI Conference 2013. The quality of presentation was so good that it is the closest I have ever come to understanding the full range of uses for tissues in biobanks, and in particular it was a real pleasure to see the level-headed and balanced approach used by consumers in explaining to fellow patients why tissue donation is so important, and also to see the genuine teamworking between consumers and researchers.
The efforts being made by consumers and researchers to work together to explain and promote tissue banking show a workable model for similar partnership working in future, and the session itself was what a good consumer-led session should be; if the presenters had not said who they were, it would not have been possible to tell researchers from consumers. Many congratulations to ICPV in setting the standard for the rest of us!"
Click here to read a review of the conference by Elizabeth Benns
European Cancer Congress, Amsterdam, September 2013
ICPV attended this years ECC in Amsterdam. We had a stand in the Patients Advocacy Square and 2 members attended the event on an ECCO bursary. It was organised by ECCO in partnership with ESTRO, ESMO, ESSO, EACR, EONS and SIOPE. The European Cancer Congress is the main multidisciplinary and multi-professional educational opportunity in oncology to take place in Europe – a fact that underpins the relevance, role and participation of each and every speciality in oncology.
For more information go to: http://www.esmo.org/Conferences/European-Cancer-Congress-2013
Click here to read Hilary and Lesley's report of the event.
Study Day on Breast Cancer in Older Women, Nottingham 15 March 2013
The aim of the meeting was to discuss how biological and psychosocial factors should influence decision making by those responsible for the care of older patients with breast cancer.
There is an acknowledgement that a greater awareness is required for this rather neglected group of patients.
The meeting was held under the auspices of the International Society of Geriatric Oncology. http://www.siog.org
Click here to read Pat's summary of the day.
Health Research Authority ‘S251’ Stakeholder Events – Manchester & London January 2013
Several ICPV members joined health professionals and researchers at two HRA meetings in Jan.
The meetings were held to discuss changes made to consent regulations. In September 2012 The Department of Health announced that functions to advise on the use of confidential patient information without consent, according to regulations made under section 251 of the NHS Act 2006, would transfer to the HRA from the National Information Governance Board (NIGB) on 31st March 2013. This would include the NIGB's Ethics and Confidentiality Committee (ECC), which currently carries out the advisory function.
These events gave an opportunity to contribute to discussions regarding:
- The current role of the Ethics Confidentiality Committee at the National Information Governance Board
- The role of the Confidentiality Advisory Group (which will supersede the ECC in April 2013)
- Perspecitive on, and priorities for, the s251 function for when it transfers to the HRA
For further information please go to http://www.hra.nhs.uk/hra-news-and-announcements/further-update-on-transfer-of-s251-function-from-nigb-to-hra/
Click here to read Jacqui Gath's review of the meeting.
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.
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.