By Margaret Grayson and Jonathan Jackson, Co-Chairs of the PPI and Priority Setting Sub-Group, Northern Ireland Clinical Research Resilience and Growth Oversight Group (NI CRRG).
Patient and Public Involvement, or PPI as it’s often referred to, is about involving patients, carers, and the public in all aspects of the research cycle as partners rather than as participants in a research study. PPI partners are part of the research team and can help shape:
- The research topic or question
- How the research is carried out
- How the results are shared and applied in practice
PPI helps researchers ask the right questions, prioritise topics that are important to patients and carers, and ultimately achieve outcomes which are meaningful to people. PPI can encourage more people to take part in research studies or clinical trials, help ensure research findings are heard and reported in an easily understandable way, and improve care in the future.
Within Northern Ireland (NI), the NI Clinical Research Resilience and Growth (NI CRRG) Oversight Group is currently overseeing the delivery of actions within an implementation plan that was developed to help with the recovery and growth of clinical research following on from the COVID-19 pandemic. Within this implementation plan, there is a section dedicated to Personal Involvement and Priority Setting. We know that strong PPI will be essential in helping with the recovery and growth of health and social care in research in NI.
To help ensure successful delivery of the actions set out in the implementation plan, a PPI and Priority Setting sub-group has recently been set up. This sub-group is co-chaired by Jonathan Jackson (Director, Northern Ireland Clinical Research Network (NICRN)/ Belfast Health and Social Care Trust) and Margaret Grayson PIER; which stands for Public Involvement Enhancing Research), and is supported by Dr Janet Diffin (Senior Programme Manager, HSC Research & Development Division).
As Co-Chairs of the PPI and Priority Setting Sub-Group we are committed to ensuring that the members work together as partners, listening to and talking with each other.
We want to ensure that Personal and Public Involvement in health care research in NI is not a tick box exercise but adds value to research studies. The group are looking at barriers and processes to ensure inclusivity. This diversity in involvement will, in turn, encourage people from a wider range of backgrounds to participate in clinical and health research studies. Excellence in Health and Social Care is based on excellence in research and impacts on the whole population of NI. With this in mind, the three areas this group will focus on are:
- Strengthening public, patient and service user involvement in research;
- Research Priority Setting;
- Making research undertaken in NI more diverse and more relevant to the UK population as a whole.
Members of the group include; PPI partners (three members of PIER); representatives from Queen’s University Belfast and Ulster University, who lead on or have extensive experience of PPI; a charity and voluntary sector representative; representatives from the clinical research infrastructure within NI; the pharmaceutical industry; and HSC Research and Development Division.
The group has already held a successful first meeting and one of the first tasks will be to help set up a research priority setting exercise for the NICRN. The aim is to use the James Lind Alliance (JLA) Priority Setting Partnership approach to identify and prioritise unanswered questions, or ‘evidence uncertainties’, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives (this includes both patients, carers and clinicians). Patients, carers and health and social care professionals will work together within the priority setting partnership to agree on the Top 10 research priorities.
We look forward to working with all our partners during this exciting time for health and social care research in NI.
To find out more about the work of HSC R&D and Personal and Public Involvement in research, please click here