Workshop on Access and Consent in Biobanking -
"Saying yes and saying please"
Newcastle, 10 October 2012
Patients are normally prepared to donate tissue to be banked for future research- in fact they are often disappointed not to be asked if they are aware that banking is a possibility. However, they have a right to expect that their donation will be put to the best possible use. This may involve samples being sent to laboratories based outside the centre which collected their tissues.
Researchers need to have access to large numbers of good quality samples to perform high quality research. Acquiring these may take considerable time and effort. Science can be a competitive activity, with acclaim awarded to the first person to report a new finding. Consequently researchers may want to restrict access to the samples they have collected
This workshop explored the issues surrounding these conflicting pressures.
ICPV member Christine Allmark spoke at on the patients view of the access template.
Click here to read her presentation.
Breast Cance Campaign Tissue Bank Roadshow, August 2012
Maggie Wilcox, Jacqui Gath and Mairead MacKenzie joined the Tissue Bank team in Birmingham to spread the word on the work of the bank and the benefits it can bring.
Click here to read Jacqui's review of the visit.
Project LEAD Institute, San Diego, July 2012
The course is run by the National Breast Cancer Coalition (NBCC) to teach breast cancer advocates the fundamentals of breast cancer science, research design, and the critical thinking skills needed to participate in the research decision-making process. Full details of the education programme can be found at http://www.breastcancerdeadline2020.org/what-we-do/advocacy-training/
Pat and Mairead were awarded scholarships to attend this years' course held in San Diego.
Mairead's view of the week and a short piece written by Pat and Mairead for the NBCC Blog can be found on the download section.
Making research count for those that count on research: Patient and public involvement in research, 27 June 2012
Carolyn Morris chaired as session at the Cicely Saunders Institute. The seminar tracked the evolution of the emergence of patient and public involvement in research focussing primarily on the UK and with particular attention to palliative care and rehabilitation. There was lively discussion and debate. The seminar was led by Prof Jonathan Tritter, University of Warwick and you can download a copy of his slides from the Institute Website. http://www.csi.kcl.ac.uk/jonathan-tritter
If you are interested in attending future events at the Institute the details can be found on the site - they are all free to attend and all are welcome.
ThinkSpace Workshops, June-July 2012
Chris Finch attended two workshops organised by Pfizer, called Thinkspace, in June and July. They were designed for patient organisations and covered four topics: funding, volunteer engagement, campaigning, and communications. Chris attended the last two.
Each session was attended by about 18 people, one from each patient organisation and related charities. Most if not all were considerably larger than ICPV, as they had been operating for longer and had permanent staff. Thus some of what was covered was not relevant, or at least impracticable, for ICPV. Nevertheless, it was useful attending, not least to hear of others’ experiences. See the download section for Chris's take on the events.
European Cancer Patients Coalition (ECPC) 2012 Masterclass, Rieti, Italy
Maggie Wilcox and Mairead Mackenzie attended the 2012 ECPC Masterclass in Italy.
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
See the download section to read Mairead's review of the meeting. To find out more about ECPC and future meeting go to http://www.ecpc-online.org/
NCIN Cancer Outcomes Conference, Birmingham, 14-15 June 2012
A number of ICPV members attended this excellent event. The event was unusual in that at least a third of the delegates were patients or carers. The papers were varied and there was something for everyone.
The ICPV stand in the exhitor area was very busy at all times.
The presentations from this event are now available on the NCIN website. www.ncin.org.uk/conference
EORTC conference, Brussels, 15-16 March 2012
Margaret Grayson and Hilary Stobart recently attended the 50th meeting of the European Organisation for Research and Treatment of Cancer (EORTC).
EORTC is an international non-profit research organization created in 1962 by European cancer specialists. It has a co-ordination and analysis centre with 180 staff members from 16 different nationalities. By conducting large, multi-centre clinical trials, EORTC aims to facilitate the passage of experimental discoveries into state-of-the-art treatments. See our download section for their review of the conference.
Late effects in Cancer Conference, Sheffield, 8-9 March 2012
Three ICPV members (Pat Fairbrother, Jacqui Gath and James Ashton) attended and ran in information stand at this event. The meeting provides an important forum for knowledge exchange and the development of management plans and research exploring the late effects in cancer survivors. The conference was a great success and you can read their report in our download section. The full presentations are available to download from the conference website.
NIHR Workshop on Surgery Research, London, 9 February 2012
ICPV member Jacqui Gath attended this event held at the Royal College of Surgeons. The aims of the meeting were to provide the surgical research community with an opportunity to hear about existing sources of research funding and to help researchers prepare for future funding opportunities.
Go to our download section to read her review of the day and for more information on the presentations.
NCRI Conference, Liverpool, 6-9 November 2011
A number of ICPV members attended the 2011 NCRI conference in Liverpool.
One of the highlights of the event was the presentation of an ICPV poster. Click here for details.
See the download section for a review of the event from ICPV member Elizabeth Benns.
Sheffield Experimental Cancer Centre (ECMC) , October 2011
The Sheffield ECMC recently held a joint meeting with the Drug Development Office (DDO).
The purpose of the meeting was to enable the Sheffield Experimental Cancer
Centre (ECMC) to showcase their talent and facilities to the Cancer Research
UK DDO, who in turn would explain their organisational structure, drug
development procedures, and display their portfolio of drugs in early trials.
Jacqui Gath, a lay member of the Sheffield ECMC, attended the meeting. To read her report please go to our download page.
San Antonio Breast Cancer Symposium Texas, December 2010
The annual San Antonio Breast Cancer Symposium is the world’s leading breast cancer research conference. It brings together research professionals from across the globe to present and discuss progress in breast cancer research and treatment.
Adrienne Morgan, Mairead MacKenzie and Maggie Wilcox represented ICPV at 2010’s conference. Adrienne and Maggie funded themselves and Mairead was funded by the Alamo Breast Cancer Foundation, who 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)
Mairead found the symposium an exhilarating – and at times exhausting – experience. It has helped her to better understand the issues affecting breast cancer patients and she feels that it will enable her to better promote the cause of advocacy.
Tri-Network North West Breast Screening Programme Quality Assurance Meeting & Breast Cancer Research Conference Warrington, November 2010
ICPV member Mairead Mackenzie presented to this meeting, giving an overview of clinical trials from her own, patient perspective. Mairead was never asked to join a trial when she was undergoing her treatment for breast cancer. She does not know if this is because there was no suitable trial taking place at the time or because her clinicians did not feel able to approach her. She believes that opting to take part in a trial gives the patient a bit of control at a time when they feel that events are totally out of their control. They can feel empowered because they are making a difference.
Mairead urged clinicians to discuss with their patients the options for taking part in clinical trials, emphasising the importance of having appropriate information to hand and drawing on examples of good practice from other countries. She also drew attention to the issue of obtaining permission to use tissue obtained from biopsies and surgery in research. She feels that it is a terrible waste to throw simply throw away tissue that could be used in research – and believes that most other patients feel the same way. (see our conference download page for the full paper)
British Oncology Pharmacy Association and the United Kingdom Oncology Nurses Annual Conferences, Manchester, October 2010
Jill Bartrop was asked by Sanofi Avensis to talk at their Symposium on Advances in cancer treatment and the patient perspective in the light of new and more targeted oncology drugs. This allowed her to explore with the audience the advances in targeted therapies and the benefits individual patient based treatments. These advances would enable better targeting of the cancer and reduce side effects on healthy cells. The inherent implications of tailored treatment would be that different patients would experience different regimes. But, the pool of possible candidates would be reduced and patients may find fewer trials appropriate for them to enter emphasising the need for more information to increase patient involvement in trials.
Late effects in cancer Sheffield, March 2010
This two-day conference explored the increasing awareness of late stage effects of cancer treatments. This area of research is in its infancy but is becoming increasingly important as more
and more patients survive their primary cancer and then experience side effects often years after their first cancer. Breakthroughs in the treatment of childhood leukaemia mean that these children
now live for many years - but can face complications in early adulthood as a result of their cancer treatment. Surgery, radiotherapy and chemotherapy can leave survivors with long-term conditions
such as lymphoedema and lung damage. Sheffield is a leading centre in the study of osteoporosis and those who have had a hormonal cancer are at greater risk of this condition.
The cancer burden affects the psychological, social and economic circumstances
for patients. The need to inform and support patients to manage their health becomes ever more critical.
Overcoming the unknown: New approaches to diagnosis and treatment of Carcinomas of Unknown Primary, Royal College of Obstetricians and Gynaecologists, London, October 2009
An over concentration on trying to find a primary cancer often subjects patients with an unknown primary to a battery of tests, going from one specialist to another with no long-term package of support. Having this diagnosis means the patient can’t be put into a neatly labelled cancer grouping and they can get lost in the system. Life expectancy is often very time limited and research data for this group are poor. The conference focused on the need for a pathway that clearly gave the clinician the right tools to develop a seamless service. The intention to develop a NICE guidance was discussed plus opportunities to develop more research using International collaboration where possible.
On behalf of ICPV, Jill Bartrop, who was diagnosed with cancer of unknown primary origin in 1999, presented the patient perspective at this important conference. (see our conference download page for the full paper)
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.