Does palliative and end of life care research match the priorities of patients, carers and clinicians? By Sanjay Thakrar, Florence Todd Fordham, and Shefali Shah, Marie Curie Published: 13 July 2017 Marie Curie has published a report looking at the palliative and end of life care research landscape in 2014 and highlights how far the priorities of patients, carers and health and social care professionals are being addressed. Marie Curie is the UK’s largest charitable funder of palliative and end of life care research. In 2014, our funding accounted for almost £1 in every £5 spent on end of life care research1. Despite this, palliative and end of life care research remains significantly underfunded. This is why our work in recent years has focused on ensuring our research investment is in areas of unmet need. Unanswered questions In 2015, we launched the results of our Palliative and end of life Priority Setting Partnership (PeolcPSP) with the James Lind Alliance. Through the PeolcPSP, we identified 83 unanswered questions in palliative and end of life care research that mattered most to patients, carers and health and social care professionals. We wanted to use this information to explore how currently on-going and very recent health research in the UK related to each of the 83 questions. To do this, we carried out a grant mapping analysis based on data collected through the UK Clinical Research Collaboration’s (UK CRC’s) Health Research Classification System (HRCS). This publicly available dataset captures information on £2 billion of UK health-related research funding from government and charity sources in 2014, which includes data collected from 52 members of the Association of Medical Research Charities (AMRC). This allowed us to identify which questions might be in the process of being addressed by research and highlighted the questions that received little or no funding. We have now used these findings to produce a comprehensive report aimed at researchers and research funders. Why open source data and grant mapping is important The UK CRC’s HRCS data is an excellent example of how an open dataset has facilitated further analysis and has made the Health Research Analysis even more valuable than it already is. In particular, the publicly available abstracts enabled us to see not only which PeolcPSP questions were being addressed but how they are being addressed whether through a systematic review, clinical trial or other method. Furthermore, overlaying two open sources of information (the HRCS dataset and the PeolcPSP questions) has allowed us to identify the gaps in current palliative and end of life care research. This new knowledge has helped to inform our funding priorities, and more specifically the themes of our annual research funding call. This has led to the funding of projects, peer reviewed by an independent committee that have directly addressed the views of patients, carers and health and social care professionals. The grant mapping analysis has further highlighted areas where interventional research is already being carried out allowing us to monitor how these findings might be put into practice in the near future. How we did it The HRCS dataset allowed us to identify research that was potentially relevant to each of the 83 PeolcPSP questions. We started by identifying keywords for each of the PeolcPSP questions with the help of a systematic reviewer and a palliative care doctor. A systematic search was conducted to ensure that all relevant grants were included in the project. The abstracts generated by the keyword search were then checked against inclusion and exclusion criteria, and subsequently reviewed against the full list of 83 PeolcPSP questions. Abstracts were checked for their relevance to the PeolcPSP questions, and were graded by how strongly they related to the PeolcPSP question, ranging from interventional to weak. This process was conducted by two primary reviewers, and checked by a control reviewer who sampled a proportion of the abstracts for consistency. What the results tell us An overview of the results of this analysis was published in an article in the European Journal of Palliative Care in 2016 and further information can be found in our latest report. In summary, we found that of the 83 PeolcPSP questions, four were not being addressed through any recent funding. A further 15 questions received some funding, but none that directly addressed the main objective of the question. The analysis also found that the theme of bereavement received no direct funding in 2014. In addition, the number one priority identified by the PeolcPSP on out of hours palliative care was one of the least addressed of the top 10 questions. The findings of the analysis add weight to the results of the PeolcPSP – there is an urgent need for further research on each of the questions identified by patients, carers, health and social care professionals. How such analyses can be used As charitable funders of research, we have an obligation to make sure that the needs of end users of research are addressed. Alongside highlighting the gaps in funding, grant mapping in this way can also help to reduce the waste, costs and patient burden caused by repeating similar research projects. It also has the potential to facilitate collaboration between researchers and research funders by highlighting the specific PeolcPSP questions that are already being addressed, how they are being addressed and by whom. We have also made the full dataset used in this report openly available so that anyone with an interest in palliative and end of life care research can drill down into the specific grants that are linked to each PeolcPSP question. We have created a “how to” guide which uses the topic of incontinence as an example, but feel free to dive in and search for a topic or condition that is of interest to you. What have we done so far and what’s next? In 2016, as part of the Marie Curie Research Grants Scheme, we partnered with the MND Association and Chief Scientist Office Scotland to fund research to address the questions from the PeolcPSP. The call resulted in the funding of nine research grants that link to six of our top 10 PeolcPSP questions and 13 from the full list of 83. As part of our latest call for research, we are pleased to be partnering with The Brain Tumour Charity for research relating to specific areas of the PeolcPSP. We are also excited to be working with the MND Association and Chief Scientist Office Scotland again to fill the gaps in palliative and end of life care research for people affected by motor neurone disease and other terminal illnesses respectively. We hope that this report and the full dataset can be used by researchers and research funders to ensure that research is conducted in the most needed areas of palliative and end of life care. For more information about Marie Curie’s research funding and the latest call for research, visit www.mariecurie.org.uk/research Authors Sanjay Thakrar, Florence Todd Fordham, and Shefali Shah from Marie Curie References 1. Data taken from the UK Health Research Analysis 2014 (UK Clinical Research Collaboration, 2015).