Establishment of an Irish Acquired Brain Injury Public and Patient Involvement Group (Irish ABI-PPI-G)

Every year in Ireland, 19,000 people will have an acquired brain injury (ABI). ABI is associated with significant mortality and disability. Due to the high personal and societal impact, it is essential that we conduct high-quality research to improve outcomes for these patients and their families. Significant research is already being conducted throughout Ireland. To ensure this research is accessible, important and meaningful to these patients, their families, carers and advocates, their involvement as key stakeholders is required. However, there is no such group in Ireland to provide this PPI input, oversight and advice.

ABI Ireland is the leading not-for-profit organisation in Ireland providing assisted living, support and care services for ABI survivors. The ICC-CTN at UCD is the Irish critical care clinical trials hub with an established acquired brain injury research program. To date, the ICC-CTN have completed some of the largest ABI trials.
Both groups wish to conduct high-quality research which is patient-centred and -involved. We realised that no formal PPI group exists in Ireland representing ABI survivors, families and carers. This patient cohort are seldom heard due to their care needs and accessibility issues. In collaboration, ABI Ireland and the ICC-CTN will establish this Irish ABI-PPI group. The project will use inclusive and equality approaches throughout to ensure this patient cohort is well represented. The major aim of this seed funding is to establish the Irish ABI-PPI group.

There are five key deliverables in this start up phase. ABI Ireland and the ICC-CTN, UCD will work closely to deliver this project. Both groups have extensive experience working with patients and public representatives. The team is multidisciplinary: ABI Ireland have extensive experience with this patient cohort and their needs, the ICC-CTN have expertise in establishing and developing PPI relationships for research. 

Following this initial seed funding ABI Ireland and ICC-CTN would maintain the group (quarterly meetings, regular communication) and develop tools for increased accessibility, particularly for patients with communication difficulties. It will be an invaluable addition to the Irish research landscape for ABI Ireland, ICC-CTN and all researchers. It will ensure these hard to reach patients’ voices are heard and establish a formal process for this in Ireland. 

Team: Prof Alistair Nichol (UCD),  Dr Leanne Hays (UCD), Ellen Conlon (ABI Ireland), Dr Kate Ainscough (UCD), Dr Lorraine Crawley (ABI Ireland) and Dylan Keegan (UCD)