Identifying Palliative and End of Life Research Priorities in Ireland: An Innovative Approach

Background: Palliative and end of life care research is an underdeveloped research area. The importance of setting research priorities has been recognized internationally, however to date, this has largely been led by researchers and academics. James Lind Alliance advocate an approach to research priority setting whereby patients, carers and clinicians work together to agree the most important questions.Aim: To identify and prioritise research questions for palliative and end of life care from the perspective of patients, carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, which involved a survey focused on uncertainties of care, (n=1403 responses), subsequently categorized as interventional questions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizations and professional groups in Ireland to rate these questions in terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, using nominal group technique undertaken with user/carers (n=16), resulting in the identification of the top ten research priority for Ireland. Stage 4: Comprised a strategic workshop with academics, researchers and funders from the island of Ireland, to develop action plans for each of the areas.Results: The top ten areas were identified and include aspects such as co-ordination of care; out of hours; care at home; pain and symptom management, palliative care and non-cancer and advanced care planning.Conclusions: This process enables researchers to demonstrate that their research is relevant, targeted and valuable to the people who most need it. We will report preliminary findings on the process and types of questions proposed. Discussion with key stakeholders contributes to better co-ordination, seeking to address the highest priority areas together.Funded: AIIHPC, larger study led by Marie Curie UK