Background The Neuberger Commission (2013) and NICE guidelines (2015, 2019) have emphasised the paucity of good quality evidence for palliative and end of life care. In the UK, hospices have a significant role in determining standard of care. We sought to quantify the extent to which hospices contribute to nationally impactful research.
Methods We analysed the NIHR portfolio of clinical and service delivery research, for studies in which hospices actively recruited patients, from 2015/16 to 2018/19. All relevant clinical specialties were searched.
Results The NIHR portfolio contained 172 studies in the 2015/16 to 2018/19 period which are relevant to hospice and end of life care. 65 out of 253 registered hospices were identified as participating in 42 studies. Hospices recruited 4418 patients to national portfolio studies, 3817 of these with cancer. Specialties contributing to this recruitment included: Cancer 19 studies; Health Services Research 11; Dementia & Neurodegeneration 6; Primary Care 3; Neurological Disorders 1; Respiratory 1; Children 1.
These figures underestimate the true contribution of hospices because in many sites recruitment is attributed to an acute trust (an established process which sees trusts providing governance in return for recruitment accrual). Moreover, we missed studies which are locally funded, single centre or related to higher educational research. We are working with hospice organisations and local clinical research networks to rectify these data gaps. The NIHR’s expansion project, which extended recognition of research into health and social care research taking place in non-NHS settings, will support this.
Conclusions We found that only a small minority of UK hospices are active in nationally impactful research. However, together they make a significant contribution to the NIHR portfolio. The NIHR & Charities Consortium for Hospice and Community Research, which funded the study, is working with the hospice sector to increase UK-wide research participation.
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