Consumer Impact! A Masterclass in Personal and Public Involvement (PPI)

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1 Issue 7: Winter 2012/2013 Consumer Impact! Newsletter of the Northern Ireland Cancer Research Consumer Forum Northern Ireland Cancer Research Consumer Forum Northern Ireland Cancer Research Consumer Forum 1 st birthday! At the Forum Meeting held 20 September 2012, members celebrated the achievements of their first year with some birthday cake and the launch of their First Year Report highlighting the work of the Forum. Copies of the report are available on the website Members celebrate 1 st Birthday of the Forum A Masterclass in Personal and Public Involvement (PPI) 40 researchers and research professionals from NI and ROI and PPI representatives joined forces at a PPI Masterclass held in the Centre for Cancer Research and Cell Biology on 6 th September The lead facilitator of the event was Mr Dave Ardron, Chair of the North Trent Consumer Research Panel. Dave s past experience includes Chair of the National Cancer Research Network Consumer Liaison Group and Lung Cancer Clinical Studies Group Member. Dave helped the participants explore issues such as the impact of lay advocacy in research, and the recruitment of lay research advocates and necessary support structures. The event highlighted a new awareness and enthusiasm for PPI in research. Mr Dave Ardron, facilitates masterclass

2 Building Research Partnerships in NI! Facilitator Mr Derek Stewart and Macmillan Learning and Development Co-ordinator Mr Jack Nunn visited Belfast to deliver two Building Research Partnerships workshops in recent months. Supported by Macmillan and the R&D Division of the Public Health Agency, in collaboration with NI Cancer Trials Centre and NI Clinical Research Network, the workshops held on 15 August and 25 October 2012 gave researchers, the public and PPI representatives a chance to work closely, and exchange ideas to develop an understanding of what it means to be involved in research and how patients, carers and the public can be involved at each stage of the research. Feedback was very positive and future plans include training local facilitators, so the workshops will be available in NI on a regular basis. Ms Genevieve Murphy (Macmillan Cancer Support) and Mr Brian Coburn, NICRCF member, two of the 19 participants at the August workshop Facilitators and some participants at the October workshop (left to right) Mr Allister Murphy, Mrs Hazel Fisher, Miss Ruth Boyd, Mr Derek Stewart, Mrs Margaret Grayson, Mr Jack Nunn PPI representative raises awareness about the importance of early detection of cancer at Stormont Mr Andy Anderson and Sarah Woolnough, Executive Director of Policy and Information, Cancer Research UK, at Stormont Mr Andy Anderson, a member of the Cancer Research UK Governance Board and Ambassador for the charity spoke at a Cancer Research UK reception for MLAs held at Stormont on 11 September Andy described his diagnosis and treatment experiences and emphasised the importance of cancer awareness and early diagnosis.

3 Contributing Perspectives in New Bowel Cancer Research Year 2 of the Forum started in September with a talk and discussion with guest researcher, Dr Sandra Van Schaeybroeck, Medical Oncologist and Cancer Research UK Clinician Scientist. Dr Van Schaeybroeck discussed her new international research proposal to help combat advanced bowel cancer and improve survival from this disease. Forum members gave their enthusiastic support for this research proposal and offered ideas about how they can get involved locally and also help to disseminate information to achieve national personal and public involvement (PPI). Forum members discuss the most effective ways to communicate messages about cancer research Communicating Research a Focus Group In September, Katie Scott, Cancer Research UK Research Engagement Manager facilitated a short focus group with Forum members to gain their perspectives about how best to communicate messages about cancer research. Members enjoyed sharing their diverse perspectives to help inform this important issue. (Left-Right) Jill Bartrop, Margaret Grayson, Richard Stephens, NCRI Consumer Liaison Group (Left- Right) Karen Innes, Margaret Grayson, Jack Nunn, Jim Ellison, Building Research Partnerships National Cancer Research Institute Annual Conference Margaret Grayson, Forum Chair, attended the National Cancer Research Institute conference in Liverpool in November She shared information about the activities of the NICRCF with members of the National Cancer Research Institute Consumer Liaison Group and described the opportunities for Building Research Partnerships with conference delegates. Conference highlights included review of the national breast screening programme and a PPI Dragon s Den.

4 Action on Access to Clinical Trials! At the Forum meeting held in November 2012, members showed their support for the publication Action on Access. The booklet outlines the aim to widen participation in clinical trials and is a call to action to: 1. Open up the health service culture surrounding clinical research 2. Increase awareness of clinical research 3. Support clinicians to become trial-friendly and trial-wise 4. Make it routine practice to discuss trial suitability 5. Improve equity of access to clinical research To read the booklet and find out more, go to: _FINAL.pdf Centre for Cancer Research and Cell Biology(CCRCB) Lab Tour In December new Forum members heard about fascinating research in CCRCB from the Acting Scientific Director, Dr David Waugh and researcher Dr Phil Burns (far right). Members were also shown round the impressive facilities and had the opportunity to ask questions about new developments in cancer research.

5 A Personal Tribute to Myree McClure In 2012 the Forum mourned the passing of an enthusiastic and esteemed member, Ms Myree McClure. Here, Miss Erin Halliday shares her personal tribute to Myree. Myree and Erin, Forum meeting I can truthfully say that Myree McClure was the most positive, most bubbly person I have met. We became friends in the Bridgewater Suite chemotherapy day unit, where I volunteer, and where Myree was coming for her latest treatment. Years ago, we had been diagnosed by the same oncologist, and had received our first treatment at the same time, but our paths had not crossed. Yet I am glad beyond measure that Myree was in my life for the past two years. Her talkative, extrovert manner drew me in; and soon we were enjoying regular lunch-dates, where Myree s soup would get cold and I would have finished eating so open and expressive was she that her conversation flowed seemingly without end. And I would have listened to Myree indefinitely, for through her speech was revealed a nature characterised by patient endurance, dedication, and faith. Myree s faith brought a kind of light she never ceased praying. She praised God throughout her long years of fighting cancer, and God s presence filled her with overflowing love. Once someone became part of Myree s life she was a fast friend. It was clear that Myree always placed others before herself, championing causes to help other people through the experience of cancer. In her emotions, her conversation, and her appearance, it seemed as though Myree s cancer didn t touch her; but it allowed her to empathise with, and comfort, others. Anyone whose life was touched by Myree could not fail to be changed by her tireless energy, and her compassion. She was above all a giving person. She gave me a bunch of yellow roses out of the blue, and those flowers refused to fade during the last months when Myree was hospitalised. It is hard to put into words my deep affection for her. In my 30 th birthday card she wrote, May God bless you with a long and happy life! And I, in those words, wished her the same. 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