Title: Palliative and End-of-Life Care Research Partnership for Northern Ireland
Funder: Public Health Agency, NI

Abstract: Why does NI need a Palliative and End-of-Life Care Research Partnership?_x000D_ _x000D_ In Northern Ireland a high number of people need help managing serious long-term illnesses (palliative care) and help at the end of their lives. Compared to the rest of the UK, research on how to help people in these situations has been rarely funded in Northern Ireland in the past. The National Institute of Health Research (NIHR) is the UK’s largest funder of health and social care research. The NIHR is funding a Palliative & End-of-Life Research Partnership to support researchers in Northern Ireland. With help from the Partnership, researchers will develop high quality research projects that could be funded by NIHR. The result will be more research of a higher quality in Northern Ireland helping people with long-term illnesses or at the end of their lives._x000D_ _x000D_ Who will be in the partnership?_x000D_ _x000D_ We want to do research that will help to meet the real needs of people. The partnership will include patients; relatives of patients; university researchers; health and social care trusts; and charities like Marie Curie and the Hospices. We will bring them together with representatives of the Department of Health and Health & Social Care Board who are central to making decisions about what health care should be provided. These people and organisations will help decide what research should be done and help make strong applications for funding. We will focus on parts of Northern Ireland with high levels of need. _x000D_ _x000D_ How will the Partnership Work?_x000D_ _x000D_ Two people will lead the partnership: a senior researcher in palliative care and another researcher learning alongside them. A specially trained research assistant will support the Partnership and researchers for 1 year. Partners will meet every two months to help researchers. Partners will help researchers by putting them in touch with professionals; getting opinions from patients and relatives; inviting patients to take part in studies; and working together for change in line with research findings._x000D_ _x000D_ What will the Partnership achieve?_x000D_ _x000D_ The plan is to have at least four strong research projects by the end of the year to submit to NIHR. As well as developing these four projects, Partners will identify important palliative and end-of-life areas that need more research, and plan and decide how the Partnership will support their future development. Those responsible for funding and delivery can put research findings into practice. The aim is to use the research to design and deliver new and better palliative and end-of-life services.

Lay abstract: Background. The National Institute for Health Research (NIHR) call for Research Partnerships is designed to build research capacity in palliative and end of life care; and to ensure that NIHR research is conducted in areas of greatest need and where there are historically low levels of research. Northern Ireland (NI) has high levels of need, with an estimated 11,300 people requiring palliative care dying each year but nearly 3,000 of these not accessing that care. The 2019/20 National Audit of Care at the End of Life reports a summary score of 7.4/10 for the specialist palliative care workforce in England and Wales, compared to just 5.1/10 in NI. This reflects differences in services such as access to seven-days-a-week, face-to-face, specialist palliative care service; and inclusion of end of life care training in mandatory training programmes. NI also has low levels of research: A 2018 review of palliative and end of life care research in Ireland found: most was observational; funding in NI came from NI government sources, or charities, rather than research councils; and that 40% of the studies received no external funding. A search of the NIHR research portfolio on 13/08/2021 for funded research in palliative or end-of-life care based in NI identified only one study. Researchers in NI have conducted preliminary research which now puts them in a position to make applications to NIHR, but such applications will be stronger and more likely to succeed with the support of the Partnership._x000D_ Aims: 1. To build palliative care and end-of-life research capacity in NI, with a specific focus on less experienced sites, so that strong applications can be submitted to Part 2 of the NIHR Commissioned Call: Building the evidence base. 2. To create a sustained collaboration that will support a programme of research in the five years following the Commissioned Call, focused on key areas of need in NI that are also relevant to the rest of the UK._x000D_ Partners and Partnership plan: The Partnership will be co-led by Drs Peter O’Halloran and Clare McVeigh, senior lecturer and lecturer respectively, at Queen’s University Belfast. A post-doctoral research assistant will be employed three days a week to work with Partners towards the Partnership’s aims. This core team will meet every two weeks for the duration of the Partnership and follow a Project Management Process agreed with the Partners to achieve their aims over a 12-month period. The Partners will meet (virtually or in-person) at least six times to plan support for the Part 2 studies and to monitor progress on their development, and on the advancement of the Partnership._x000D_ The Partners are: Queen’s and Ulster Universities; Chief investigators of Part 2 Study proposals; All Ireland Institute of Hospice and Palliative Care; Marie Curie Hospice Care; Patient and Client Council; Kidney Care UK; The three Health & Social Care Trusts (Northern, South Eastern, and Belfast) covering areas with greatest need; NI Clinical Trials Unit; Public Health Agency; Department of Health; Health and Social Care Board. _x000D_ Timelines and outcomes: Over 12-months, this Partnership of universities, charities, patient groups, policymakers, and commissioners will deliver four strong palliative/end-of-life care research applications to NIHR under Part 2 of the call. They plan to continue in Partnership beyond the Part 2 studies, to identify important palliative care and end-of-life care needs and develop programmes of research, to provide evidence to underpin future care.

Research activity codes: 7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT);8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE