This report aims to better understand the joint palliative and end of life care research portfolio of the National Institute for Health and Care Research (NIHR) and Marie Curie. The portfolio analysis brings together data from two UK-based research funders and is intended to inform ongoing strategic efforts to address gaps in the current evidence base.
The need for palliative care has been conservatively estimated to be between 69 and 90% of all deaths in high-income countries (Murtagh, 2014; Fantoni et. al., 2023). Yet, palliative and end of life care has been shown to be one of the lowest funded areas of healthcare research in the UK. The UK Clinical Research Collaboration (UKCRC) Health Research
Classification System (HRCS) 2018 dataset shows that only 0.21% of all non-commercial health-related project and programme research funding is spent on research focusing on palliative and end of life care (UKCRC, 2020).
This portfolio analysis draws upon two data sources: a publicly available dataset of health-related research grants or awards active in 2018 (UKCRC, 2020) and created a new dataset (https://nihr.opendatasoft.com/explore/dataset/palliative-and-end-of-life-care/table/) of related research grants and awards from NIHR and Marie Curie (2011 – 2018/19). Analysis found that:
In 2018, NIHR was the largest funder of palliative and end of life care research in the UK (46%), followed by Marie Curie as the second-largest funder overall (34%) and the largest charitable funder.
The majority of NIHR and Marie Curie awards were projects, with relatively few personal awards.
There was variation in investment across the UK, with host organisations located in Northern Ireland and the South West of England receiving least funding, followed by the West and East Midlands.
Most awards were associated with ‘generic health relevance’ rather than a particular disease or condition. Where specific conditions were addressed, most awards concentrated on care for people with cancer, followed by neurological (mostly dementia) and respiratory conditions. Only a small number of awards addressed frailty, multimorbidity, Stroke, Oral/Gastrointestinal, Renal, Urogenital and Cardiovascular conditions, or Mental Health.
Apart from age, there was very little research addressing relevant palliative and end of life care research questions with respect to protected characteristics.
This analysis can be used by funders and researchers to continue to support efforts to fill gaps in the evidence base, and in response both funders have issued further calls for research.