The Northern Ireland Cancer Trials Network (NICTN) established the NI Cancer Research Consumer Forum (NICRCF) in 2011. The NICRCF brings together a group of patients and carers affected by cancer to work in partnership with cancer researchers across Northern Ireland and beyond. Involvement utilises various methods such as; face-to-face discussion with researchers, review of patient clinical trial documents, membership of research project committees. NICTN coordinates and supports research delivery in hospitals across Northern Ireland and Personal and Public Involvement (PPI) is embedded within its processes. The NICRCF also works with researchers from the wider cancer research arena. Through partnership, the highest quality cancer research is undertaken, maximising patient benefit.
At what level did the PPI take place?
- Service development/delivery;
PPI helped the project to:
- Improve efficiency of a service;
- Improve quality;
- Improve safety;
- Increase ownership;
- Promote high quality cancer research for patient benefit.
In 2011 the NICTN and Margaret Grayson (PPI Representative) devised a strategy for PPI in cancer research in Northern Ireland, in line with the needs of the cancer research landscape in Northern Ireland and the Health and Social Care (HSC) Research & Development (R&D) Division PPI strategy. At the heart of the strategy was the creation of the NI Cancer Research Consumer Forum. This group of patients and carers affected by cancer became a key partner. NICRCF members all share a passionate belief in the value of research to transform future care and treatment for the benefit of cancer patients. Margaret Grayson became the Chair of the NICRCF, a position she continues to hold, and from smaller beginnings the NICRCF now maintains over 20 members. New members are always welcome!
Given the nature of cancer and the collaborative needs of research, involvement is not confined to working with the NICTN, however, the NICTN facilitates co-ordination/communications, training and funding of NICRCF members’ expenses.
While NICRCF meets only four times a year, involvement in research, as a forum or as individual representatives, is on-going, through e-mail communications and meetings.
Aim of involvement
The aim of involvement is to enable meaningful and genuine partnership-working between cancer researchers (doctors, scientists, nurses and allied healthcare professionals etc.) and people affected by cancer (patients and carers) in the processes and conduct of cancer clinical research (e.g. clinical trials of novel drugs or new treatments / tissue sampling / surveys / supportive care research) in Northern Ireland and beyond, to influence research to maximise patient benefit.
PPI representation influences the oversight of research conducted, including issues such as patient recruitment and safety. NICRCF members influence a range of research projects including new approaches in the treatment and care of patients across a range of cancers, and treatments. The implementation of research supports high quality care of patients in these settings.
All patient documentation is reviewed for transparency and understanding, and PPI perspectives highlight where changes are required, or where further explanation during patient discussion would be appropriate when the study opens for recruitment.
A key challenge at the beginning of involving service users and carers was preparing both NICRCF members’ and professionals’ expectations. PPI in research was not common experience, so it was a learning process, but ultimately outcomes exceeded expectation. Research and science jargon creates a barrier, but this can be addressed though training, preparation and effective facilitation of meetings and gaining experience. NICRCF membership and research staff are not static, so training is required on an on-going basis. HSC R&D Division/NICTN Building Research Partnerships Workshop has become an important core element of training.
Outcomes due to involvement
Involving service users and carers in the work of the NICTN and cancer research in Northern Ireland has been culture changing, bringing about a fresh focus on patient and carer perspectives and a new way of working including the NICRCF representatives being research applicants in research funding submissions, involvement across a study life-cycle and in decision-making about research and resources.
Examples of the outcomes of involvement are demonstrated by researcher’s feedback:
- “The Forum members provide a valuable contribution to the development of research locally. Their input into study design, and the provision of a consumer perspective on study documentation, is extremely helpful for researchers, who may not always appreciate the issues of greatest relevance to consumers and patients. I have found that working in partnership with the Forum has been very useful for me as a Chief Investigator, and provides a perspective which is not always apparent to researchers.”
Mr Stuart McIntosh, Consultant Breast Surgeon, NICTN Deputy Clinical Lead.
- “With the Forum’s input, they helped me redesign the study to make it easier for patients to participate in and helped amend the patient information to make it easier to understand. These important inputs will help make this study more acceptable and more likely to be successful with the aim of reducing skin reactions from radiotherapy.”
Dr Gerry Hanna, Consultant Clinical Oncologist, NI Cancer Centre.
Patients who have taken part in clinical trials have reported how important participation in research has been. The NICRCF helps raise awareness of research through partnership activities on International Clinical Trials Day and during other public events and communications. The results of the 2015 NI Cancer Patient Experience Survey indicated 86% of patients in Northern Ireland were aware that research takes place in their hospital.
HSC R&D Division ‘Strategy for Personal and Public Involvement (PPI) in Health and Social Care Research’ http://www.research.hscni.net/sites/default/files/strategy_for_PPI_Report_RD_2014.pdf
The NICRCF won the 2016 PPI Award for Quality and Safety.
Feedback/quotes from service users/carers involved
“I am very proud to be part of the NICRCF because I think it does a really good job and now I am a small part of it and really enjoy presentations from cancer researchers and the opportunities to comment directly on their research and to ask questions. I really appreciate the opportunities for training whilst a member of the NICRCF. Being a member of the NICRCF has been an eye-opening experience for me, as a member of the public I feel I have learned a lot and have absorbed much information and knowledge. It has been a privilege to gain insight into how researchers work and also how they are only human too and are sometimes in need of questions or queries from a “lay” perspective. That is the key thing, I think.”
NICRCF Member (Mary Gordon)
“Having unfortunately experienced the death of two of my children I have been inspired by the forum to find the necessary cures to cancer. Even though it’s too late for my children but the PPI FORUM is one way I feel I can help so other parents don’t have to experience what I had to. It has encouraged me to be proactive in Palliative care by being able to share my experiences and how we can learn from them to improve care for not just the patient but the family carers and staff.’”
NICRCF Member (Dori-Anne Finlay Blackstock)
For further information, contact:
Ruth Boyd (Cancer Research UK Senior Nurse/NICTN Deputy Director/PPI Professional Lead)
NI Cancer Trials Network
Tel: 028 9063 8468