Establishing palliative care research partnerships in Northern Ireland.

Abstract

Background: The National Institute for Health and Care Research call for research partnerships was designed to build research capacity in palliative and end-of-life care and to ensure that the research of the National Institute for Health and Care Research is conducted in areas of greatest need and where there are historically low levels of research. Northern Ireland has high levels of need, relatively underdeveloped services, and comparatively low levels of research.

Aims: To build palliative care and end-of-life research capacity in Northern Ireland, with a specific focus on less experienced sites, so that strong applications could be submitted to Part 2 of the National Institute for Health and Care Research Commissioned Call: building the evidence base. To create a sustained collaboration to support a programme of research focused on key areas of need in Northern Ireland that are also relevant to the rest of the United Kingdom.

Methods: The Partners were: Queen's, Ulster and Open Universities; All Ireland Institute of Hospice and Palliative Care; Marie Curie Hospice Care; Patient and Client Council; Kidney Care UK; the three Health and Social Care Trusts covering areas with greatest need; Northern Ireland Clinical Trials Unit; Palliative Care Research Forum Northern Ireland; Public Health Agency; Department of Health; Health and Social Care Board. The Partnership was co-led by Drs Peter O'Halloran and Clare McVeigh, senior lecturers at Queen's University Belfast. A post-doctoral research assistant was employed 3 days a week in a support role. The Partners agreed the terms of reference for the Partnership and met six times over the following year. An expression of interest form was distributed to potential investigators, producing 13 responses. The Partnership then offered networking opportunities for investigators with specific partners, facilitated by the research assistant. The Partnership hosted a palliative care research conference on 'Cross-sector Partnerships for Palliative and End-of-life Care Research'. This included presentations from the National Institute for Health and Care Research representatives on grant proposal preparation. A website and newsletter were published.

Results: Nine introductory meetings took place, mostly with early career researchers. Topics included symptom management, accessing palliative care for vulnerable groups, perinatal bereavement care and advanced care planning. Draft proposals were reviewed by the Partnership and one was prepared for submission to Part 2 of the National Institute for Health and Care Research Commissioned Call: an evaluation of an intervention to improve the readiness of people with end-stage kidney disease, healthcare professionals, and surrogate decision-makers to engage with advance care planning.

Conclusions: The Partnership took advantage of widespread interest and goodwill among the Partners and their organisations, and proved its usefulness by enabling one application to go forward under the Part 2 call, especially in facilitating patient and public involvement in the development of that application. However, the relatively small number of experienced researchers meant that few were placed to take full advantage of the opportunities offered during the funded lifetime of the Partnership. We believe that an investment over a longer period - for example, 3 years - combined with formal mentorship for potential principal and co-investigators, would be more likely to lead to the development of credible research proposals with a better chance of being funded by the National Institute for Health and Care Research.

Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number NIHR135291.