Conferences

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.

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 meetinging 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.

National Cancer Research Institute

The National Cancer Research Institute (NCRI) is a UK-wide partnership between the government, charity and industry which promotes co-operation in cancer research. Each year the NCRI hosts a Cancer Conference which has become
the major forum in the UK for sharing British and international cancer research. The conference brings together the leading experts across all disciplines and is an excellent mix of high-quality plenary speakers, symposia and parallel sessions, including focused satellite meetings and workshops.

Members of ICPV have attended the NCRI conference since its inception.
Many patient advocates (including CLG members) receive NCRI bursaries. These
are hugely appreciated and enable this very important patient participation.
These conferences provide an excellent forum for us to engage in debate with
clinicians and researchers and to raise awareness of the work of ICPV and the assistance that we can provide in research design and conduct.

At the 2011 conference we have had an abstract accepted and will be presenting a poster on our work.

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)