The NI Cancer Trials Network (NICTN) and NI Cancer Research Consumer Forum (NICRCF) wish to thank everyone involved and all who joined them at their new Personal and Public Involvement (PPI) Strategy launch event 26 March 2019 in the Belfast City Hospital.
While looking ahead to the future, the event was also a celebration of current local cancer research and successful partnership working. Margaret Grayson (NICRCF Chairperson) welcomed everyone and Margaret and Ruth Boyd (CRUK Senior Nurse and NICTN/ECMC PPI Professional Lead) kicked-off the presentations with a profile of PPI, an overview of the work of the NICRCF and a review of the new strategy’s goals. The goals are to:
- further embed a culture of partnership working in cancer research
- provide sustainable support for the NICRCF to enable PPI in cancer research to grow
- maximise the impact of PPI through best practice and standards
The strategy is now out for consultation until the end of June 2019 – all comments are very welcome!
The agenda for the afternoon also covered developments in treatment and care across a range of cancers.
Mr Stuart McIntosh (Clinical Senior Lecturer, QUB, Consultant Breast Surgeon, Belfast Trust, Acting Clinical Director NICTN) explained that clinical trials were available across Northern Ireland, co-ordinated by the NICTN. Stuart explained that within breast cancer research there were several themes that were evident:
- de-escalation of treatment – to minimise unnecessary side-effects
- precision – to ensure treatment is tailored to an individual’s specific tumour
- increasing collaboration across professionals and including patient representation
- increasing patient expectation to receive clinical research options as part of standard practice
- During a refreshment break the 85 people attending the event, from across Trusts, universities, charities, patients and public, had the opportunity to access information from a number of services, charities and research funders, alongside information from the NICTN and NICRCF. We are very grateful for the information stands and representatives of:
- NICRCF members Hazel Carson (BRCA Link NI and CIBRAC study Trial Management Group) and Dr Sandra Irvine, PPI representative in regional and national bowel cancer research groups, joined Stuart and Philip on a panel during a Q&A session. Members of the audience asked questions leading to discussion about bowel cancer screening availability, the role of a PPI representative, national developments in bowel cancer research and breast cancer trials.
- Dr Philip Dunne (Lecturer in Early Cancer Detection, Centre for Cancer Research and Cell Biology, Queen’s University Belfast) outlined the development of bowel cancer at tumour and cellular levels, highlighting how molecular profiling of tissue in the laboratory is enabling the development of personalised treatment. Biomarkers can help to predict an individual’s sensitivity to particular treatment, helping doctors select treatments for patients with most benefit and fewer side-effects. Philip also emphasised the value of bowel cancer screening in early detection.
- A number of studies were outlined in the settings of prevention, ductal carcinoma in-situ, early invasive breast cancer, post-operative radiotherapy and chemotherapy before surgery. Stuart advocated the value of patient representative membership in the study management groups for the trials he was leading on.
- HSC R&D
- NI Biobank
- Friends of the Cancer Centre
- Leukaemia and Lymphoma NI
- Belfast Trust PPI
- Macmillan Information and Support Centre
- Cancer Research UK
Dr Ciaran Fairmichael (Clinical Research Fellow, QUB, ST6 Clinical Oncology Doctor, NI Cancer Centre, Belfast Trust) provided an encouraging overview of how local cancer trials were having a positive impact on outcomes for men with prostate cancer. Ciaran described early results from the ADRRAD and SPORT trials and explained how these treatment advances are transforming care in Northern Ireland.
NICRCF member Kate Burns was the next speaker. Kate provided a very moving and eloquent personal insight into her husband Paul’s experience of life with prostate cancer until, sadly, Paul died in 2014. Kate described the transition of ‘person to patient’ and the significance of holistic care throughout treatment, research and palliative care. Paul had shared his story at a NICRCF public event back in 2012, so the NICTN/NICRCF were particularly delighted and humbled that Kate spoke at this event.
Dr Olinda Santin concluded the presentations with an honest and enjoyable description of the valuable impact involvement of NICRCF members had on a project to develop support for carers. Through these discussions the project changed direction, resulting in the development of a website, designed with and for carers. This website ‘Cancer Caring Coping’ has already been adopted internationally and provides a unique and accessible resource for carers.
The event concluded with a final Q&A panel, where Ciaran, Kate and Olinda were joined by NICRCF members Ken McBride and NICTN Operational Director Dr Melanie Morris. Melanie thanked speakers and along with Kate highlighted how valuable the carer website would be. Questions from the audience lead to discussion about treatments for prostate cancer available in Northern Ireland, and Ken described why he had taken the decision to participate in a clinical trial.
Margaret concluded the event and many attendees took copies or summaries of ‘A Strategy for PPI in Cancer Research in Northern Ireland’ or other information.
The NICTN and NICRCF were delighted with the positive reaction of the audience to the event. Comments received included:
- Fascinating to learn about scope of clinical research in NI & hear from doctors, patients and other affected people
- High quality of the presentations and guest speakers
- Patient story was really helpful in understanding contribution & PPI modifying research
- Kate Burns’ talk was very moving- an inspirational representative for the forum
- Olinda’s website is incredibly useful
- Current prostate cancer research very informative and the emphasis on carer resources
- Evaluation was also unanimously positive, frequently describing the event as excellent.
Click the links below for more pictures fom our event!