Award Title: BRHUmB: Building a Research Hub for Palliative Care in Birmingham and the West Midlands
Funder: Department of Health and Social Care

Abstract: We know that hospice and palliative care services have changed in the past few years in terms of moving care into the home setting. Since the pandemic, hospice in-patient admissions have reduced, some palliative care nursing services have been restricted, and emergency admissions of people in the last year of life are rising. Informal carers and relatives in our patient and public advisory group have raised concerns that ‘the different parts of system do not seem to talk to each other’ and this ‘makes it more difficult to manage on top of the difficulties you already have’, clearly impacting upon the experience for both the person dying and their carers /relatives.  What has become clear is that to address these issues we need to coordinate palliative care research and knowledge exchange activities in a better was, not just within palliative health and social care organisations, but across them. _x000D_
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In collaboration with our PPI advisory group (made up of people from diverse backgrounds who have experienced supportive care or cared for someone with a terminal condition), we have identified four key ways to achieve better palliative care research and knowledge exchange that will inform health and social care services and ultimately improve care experiences for people who are dying and their relatives and carers. First, we will create a central hub for research at the University of Birmingham called BRHUmB “Building Research Hub for palliative care in Birmingham and the West Midlands”. The hub will bring together a collaborative team of experts, academics, clinicians, stakeholders and patients, carers and public to share expertise in palliative care and palliative care research. In particular, by developing a programme of research to better intervene in palliative care crisis at the end of life it will become an internationally recognised research centre. _x000D_
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Second, we recognise that while many in the field of palliative care wish to take part in research, they do not have the necessary knowledge or experience to do so. Therefore, we will instigate a programme of ‘academic buddying’ to share the ‘how to’ with research interested stakeholders and clinicians in palliative care. We will use this time to identify the priorities for palliative care research from the staff and stakeholders working in the different areas of health and social care. _x000D_
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Third, we need to explore the priorities for research from key stakeholders (such as hospice managers, team leaders in social care, primary, community and secondary care settings) in different areas in the West Midlands. This is a diverse population in terms of ethnicity, cultural, socio-economic and health needs and so our findings will be useful to researchers and service users around the country. _x000D_
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Finally, we will work as one group of academics, clinicians, stakeholders and PPI members to co-design a grant submission for NIHR in 2022 further strengthening the research activity in the area. We will work together to report and present our work which will lead to further research that has been identified by the clinical providers and service users themselves.

Lay Abstract: Background: The need for palliative care is predicted to increase between 25-42% by 2040 (Etkind et al. 2017) with up to 90% of all people dying in England having palliative care needs (Finucane et al. 2020).The NHS is already seeking to increase generalist and specialist palliative care support, a trend accelerated by Covid-19 but there is a lack of evidence to inform such developments. _x000D_
A particularly challenging aspect of care as death nears is the increased risk of ‘Palliative Care Crisis’; a sudden deterioration which requires an urgent response. Such crises are complex and multifactorial fuelled by the diverse needs of the dying and those close to them.  In the absence of sufficient professional and family support, hospital admission (often emergency) is not unusual (Hoare et al. 2019). ‘Palliative Care Crises’ are rarely well managed by single service interventions and the emphasis needs to be on integrated systems of care. To inform such developments, evidence is needed from high quality research conducted with health and social care organisations across different service settings and clinical areas. _x000D_
We propose Building a Research Hub for palliative care in Birmingham and the West Midlands (BRHUmB); a region historically underserved in terms of NIHR funding. The West Midlands is the second most diverse region in the UK in terms of cultural, socio-economic and health and social care needs. It is home to an emergent palliative care research community of academics, clinicians and services users with complex palliative health and social care needs. We seek to better coordinate our collective efforts and build an interdisciplinary, multi-agency research partnership that brings us together to increase patient and staff benefit._x000D_
Aim: To establish BRHUmB as a recognised centre for palliative care research in Birmingham and the West Midlands and develop the region’s international reputation into researching palliative care crisis. _x000D_
Methods: (1) Create a multi-stakeholder hub to link nationally and internationally to other research collaboratives, national bodies and develop our existing patient and public involvement (PPI) group to include wider representation from health and social care; (2) Collaborate with research interested stakeholders and clinicians from across the palliative care field in health and social care through an academic buddying system and outreach activities offering support to research inactive areas and identifying stakeholder membership for BRHUmB Rapid qualitative interviews (n=50) will be conducted with health and social care staff and stakeholders to investigate the research priorities for palliative care integration and co-ordination across different settings (hospital, hospice, community); (3) Consolidate identified research  priorities into key themes through a three-round eDelphi study with key stakeholders (n= 50); (4) Co-design the parameters of a programme grant for submission to NIHR with staff, key stakeholders and PPI service users and Co-Produce outputs to disseminate the priorities for palliative care research. _x000D_
Impact: Through BRHUmB we will coordinate a 12-month programme of partnership activities that will embed key research networks in the West Midlands and ensure research capacity in palliative care is able to meet the changing and diverse demands of its population. Outputs will be disseminated through peer reviewed papers, conferences and via social media including the BRHUmB website.

Research Activity Codes: 7.2 END OF LIFE CARE
Health Categories: GENERIC HEALTH RELEVANCE