Bridging the gap between research and policy to improve end-of-life care

Dr Katherine Sleeman is a FLIER participant. She is an NIHR Clinician Scientist and Reader in palliative medicine at the Cicely Saunders Institute, King’s College London, and an honorary consultant in palliative medicine at King’s College Hospital NHS Trust.

When I joined FLIER, I was about two-thirds of the way through my NIHR Clinician Scientist Fellowship, working to understand and improve patterns of care for people with dementia who are approaching the end of life. Most of my research uses routine data resources; that’s data that is collected all the time as part of clinical and administrative systems.

My research revealed that some aspects of end-of-life dementia care appear to have improved over time, particularly since the Government’s end of life strategy was published in 2008. My colleagues and I found a pattern towards out of hospital deaths, which is positive as most people prefer to die out of hospital. But we also found that emergency department attendance among people with dementia was not only common, increasing exponentially towards the end of life, but was also becoming more common over time.

So, while a policy focus on place of death did seem to have made a difference, it appeared to be at the expense of other indicators of the quality of end-of-life care, and these indicators weren’t necessarily being looked at by policymakers.

The reason I joined the FLIER programme was that I wanted to bring together three broad sectors: the palliative care sector, data science and policy. I have a vision of a slightly different way to do research, where decision makers and policy makers are part of the process from the beginning. We need to hear from them about their priorities and what the most important problems are from their point of view. Our research must then deliver answer to those problems in a format that is easy to understand and implement.

Early in 2020, we found out that Marie Curie – a charity that I have worked quite closely with in the past – wanted to commission a new major research programme to paint a picture of what it’s like to die in the UK and use the findings to drive policy change. I’d like to think that Marie Curie’s decision to do this might have been influenced by some of the noises I and other people have been making about improving evidence-informed policy making.

I applied for the first stage of the programme with collaborators at King’s, the University of Hull, the University of Cambridge and Public Health England, and received short-term funding to develop a commissioning brief. During the Spring of 2020, we interviewed numerous experts from palliative care, policy and academic sectors in the UK and internationally, as well as patients and carers, to guide development of the commissioning brief.

We have now won funding from Marie Curie to deliver the next stage of the research to understand the experiences of people affected by death, dying and bereavement in the UK, and to frame the findings in a way that compels policy makers to take action. We will be working closely with the Research and Policy teams at Marie Curie, as well as with the King’s Policy Institute to drive maximum impact.

Being part of FLIER has raised my ambition and given me confidence in my own ability and vision. At the end of 2020 I applied for and was appointed to the Laing Galazka Chair in Palliative Care, a new endowed Professorship based at the Cicely Saunders Institute. This is a fantastic opportunity to lead and develop cross-sector research, working at the intersection of policy and palliative care. The leadership skills I have developed through FLIER, particularly in terms of working across academic, clinical, policy and voluntary sectors, will be invaluable in this new role.

The thing that guides me in my career, and what led me to FLIER, is the need for research to have more impact. It is not enough that we as academics do high quality research. We also must ensure that the research findings are used to improve outcomes for patients, carers and society.

Palliative and end of life care research receives just 0.1% of all medical research funding. That’s 10p in every £100 for something that will affect everyone. And yet we know that, worldwide, palliative care needs will double over the next forty years. We have to achieve the maximum impact out of the research funding we receive, and I think an important way we can do that is to bridge the evidence-policy ‘gap’.

At a FLIER Immersion day at the Department of Health and Social Care, I learnt that good policy happens where politics, evidence and delivery combine. By aligning our research with policy priorities and by framing the results so that they speak to these priorities, we will make faster progress for our patients. I am excited about leading work in this area.

Dr Katherine Sleeman is a participant in Round 1 of the Academy of Medical Sciences’ FLIER Programme, a unique programme that will develop leaders of the future who can create collaborations across academia, industry, the NHS and government to drive innovation.

The FLIER Programme is generously supported by the Dennis and Mireille Gillings Foundation and the Government Department of Business, Energy and Industrial Strategy ‘Investment in Research Talent’ fund. If you would like to support the work of the Academy to develop talented researchers, visit our Supporters page.

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