Consumer Impact! Newsletter of the Northern Ireland Cancer Research Consumer Forum Northern Ireland Cancer Research Consumer Forum

Transcription

1 Issue 9: Autumn/Winter: 2013/2014 Consumer Impact! Newsletter of the Northern Ireland Cancer Research Consumer Forum Northern Ireland Cancer Research Consumer Forum Speakers and members of the Forum before the opening of the public information evening Radiotherapy Research Information Evening has the X-Factor! In October 2013 Forum members hosted a public event where researchers shared the good news about local developments in radiotherapy research and how these are having a positive impact on new treatments and patient care. Cancer Research with the X-Factor! The NI Cancer Research Consumer Forum invites you to a free public information evening about exciting developments in Radiotherapy Research Wednesday 16 th October 2013 Belfast City Hospital, Cancer Centre Level 1, Seminar Room 3, 7-9pm Refreshments will be served. If you would like to come please register interest by contacting NI Cancer Trials Centre: nictc@belfasttrust.hsnci.net Tel: NI Cancer Research Consumer Forum

2 Radiotherapy Research Information Evening has the X-Factor! (cont.) Radiotherapy is an important cancer treatment that currently accounts for 40% of all cancer cures. The audience gathered in the Cancer Centre, Belfast City Hospital, and the Chair of the Forum, Margaret Grayson, opened the evening by describing the role of Personal and Public Involvement in cancer research. Professor Joe O Sullivan, Consultant Clinical Oncologist, Belfast Health & Social Care Trust (BHSCT) / Professor of Radiation Biology, Queen s University Belfast (QUB), described how research-driven innovations in radiotherapy and radionuclide treatments had led to faster availability of more effective treatment for patients in NI. He also acknowledged our debt to cancer patients willing to take part in clinical trials, and to the NICRCF members, for working with researchers and helping to publically profile the value and importance of research for cancer patients. Professor O Sullivan emphasised that research not only provided value for money, but it was a vital quality driver, and hence core to a high quality health service. A key theme, addressed by the other speakers (Dr Aidan Cole, Specialist Registrar, BHSCT / Clinical Research Fellow, QUB; Dr Gerry Hanna, Consultant Clinical Oncologist, BHSCT and Dr Suneil Jain, Consultant Clinical Oncologist, BHSCT / Senior Lecturer, QUB), was research involving higher radiotherapy doses tightly targeted to the cancer, while minimising radiation to surrounding tissue. This aimed to introduce even more effective treatment, while minimising side-effects and reducing the number of treatment visits patients require. Some Forum members, speakers and Mrs Caroline Leonard (back row, 2 nd from right), Belfast HSC Trust Cancer Services Co-Director, who attended the event There was very positive feedback from the audience. Mr Allister Murphy, a Forum member commented; From a cancer patient perspective I was amazed to see the huge advances that have been made in radiotherapy technology in only a few years. The influence of research is clearly evident in every aspect of radiotherapy development and credit must go to the research teams and the patients who volunteer. Events like this help the public see the tangible benefits of research.

3 Launch of European Research Programme in Colorectal Research - MErCuRIC Members of the Forum were delighted to attend Riddel Hall, at Queen s University Belfast, 11 December 2013, for the launch event of MErCuRIC - a European Commission Funded Framework VII Programme of Research in Colorectal Cancer. Dr Sandra van Schaeybroeck, Co-ordinator of the Research Programme from the Centre for Cancer Research and Cell Biology (CCRCB) at Queen s, said: Our research has identified two key genes that are contributing to the aggressive spread of colorectal cancer. The research being carried out by MErCuRIC will allow us to bring this research to the next level by developing and conducting a clinical trial that targets the products of these two genes in patients with metastatic or aggressive colorectal cancer. Margaret Grayson, Forum Chair, congratulated the Belfast research team on the launch of the pan European research programme. She commented, it is exciting for patients and the population of NI to be aware of the scientific and clinical cancer research advances being made here. This work also demonstrates the importance of collaboration in research and we look forward to the impact this clinical trial will have on the future treatment and care of people affected by colorectal cancer. The NICRCF totally endorses this research and looks forward to continuing involvement in this study and working with the research team. Mrs Margaret Grayson (7 th from left), PPI Representative, with other Project Team members from NI and across Europe attending the MErCuRIC kick-off meeting in Belfast, 12 December 2013

4 PPI Representatives Share Training Opportunity Forum members have welcomed the opportunity to link with researchers and PPI representatives from other health research areas for PPI training opportunities funded through the HSC R&D Division of the Public Health Agency. On 24 October 2013 Margaret Grayson led facilitation of a Building Research Partnerships workshop, which was held at the Crescent Arts Centre. As with previous workshops, the event was very well attended and evaluated. Other Forum members also facilitated sections of the programme. Here Kate Burns provides a personal reflection on this experience In October Margaret took me well out of my comfort zone by inviting me to help facilitate a part of the workshop. The section I supported involved examining the research cycle itself and the opportunities and benefits at each stage for involving lay people. Kate Burns (second from right) and other Forum members involved in facilitating the Building Research Partnerships workshop, de-brief with Jack Nunn, Macmillan Learning and Development Co-ordinator The learning intention was not only to understand the cycle itself and the potential for lay involvement, but to understand how this is essential for ensuring that research is relevant and makes maximum impact. The day was a great success, empowering participants to fully explore the potential for public involvement and researcher facilitation. It was lovely to have the opportunity to work with Margaret, Members of the Forum and PPI Representatives from the HSC R&D Division, with Billy Dixon (far right), after the training event Janine and Sandra, my colleagues from the Forum. Kate Burns Training had an added Christmas feel at an event held at Grosvenor House in December The first speaker was Professor Gerry Leavey, Director, Bamford Centre, University of Ulster, who provided a fascinating insight into development of the new mental health research network in NI, and building capacity and encouraging service user and carer involvement. Mr Billy Dixon gave an enjoyable and informative presentation entitled Stripping it Back, sharing tips on what matters in the communication process and how to be effective in communication and influencing.

5 Researchers Share Insights and Project Ideas Forum members with Dr Ronan Gray (Centre front) Forum members with Angela O Neill (3 rd from left) and Professor Mark Lawler (6 th from left) Forum members were delighted to hear details of new projects with potential positive benefits for cancer patients. Dr Ronan Gary, General Surgery Registrar, based at the Ulster Hospital, described his study on The role of statins and molecular biomarkers in colon cancer survival. Angela O Neill, Radiotherapy R&D Clinical Specialist, based at the Cancer Centre, described her study Exploring the role of naturally occurring prostate calcifications as an alternative to surgically implanted fiducial markers for image guided radiotherapy. Both researchers generated lively discussion, and were commended for their research ideas. Forum members welcomed news of strategy developments from the European Cancer Concord, presented by Professor Mark Lawler, Centre for Cancer Research and Cell Biology, QUB. Forum Launch Year 2 Report - It s not just meetings and events This newsletter is a welcome opportunity to share some of the more public aspects of the work and training opportunities of the Forum, however, as the staff of the NI Cancer Trials Network and many researchers are aware, involvement in research as a Personal and Public Involvement Representative demands a lot of time and commitment behind the scenes; reviewing documents, attending research meetings and membership of committees. The Forum was delighted to launch its Year 2 report in October We hope the report captures in more detail some of the Forum s work and its impact. To view the report, please see the link at the following website If you have a request for Forum involvement in cancer research, or are interested in becoming a member, please get in touch via the contact details below. The Northern Ireland Cancer Research Consumer Forum & Newsletter are co-ordinated by the NICTC. For further information please contact: Ruth Boyd NICTC East Podium, C-Floor, Belfast City Hospital, Lisburn Road, Belfast BT9 7AB Tel: Ruth Boyd at: nictc@belfasttrust.hscni.net