Some might remember the first time we asked that question in 2014. Marie Curie and many funding partners and stakeholders worked with the James Lind Alliance (JLA) on the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the express aim to hear from patients, carers and health and social care professionals about what issues relating to palliative and end of life care needed more evidence, informed by their lived and professional experience. We identified 83 questions in a first survey, prioritised them to a short-list of 28 in a second survey, and agreed a top 10 research priorities in a final workshop.
It’s been 8 years since the publication of the research priorities in 2015. The top 10 research priorities have played a huge role in Marie Curie’s research strategy, informing our open research calls and our funding partnerships with, for instance, the Motor Neurone Disease Association and the Chief Scientist Office. They are still influential in informing the priorities of the National Institute for Health and Care Research (NIHR). Working with the JLA means that there is a direct link to the NIHR topic identification team. This methodology therefore informed the two largest funders of palliative and end of life care research in the UK: NIHR funded 46% and Marie Curie 34% of peolc research in 2018 (NIHR and Marie Curie, in preparation).
A new survey
Today, we are launching a new project, to refresh the research priorities from 2015. Have new questions arisen following the production of new evidence and the Covid pandemic? Or are people still grappling with the same issues? We are again working with the JLA (the project is sponsored by UCL) and the first step is gathering the opinions of patients, carers and health and social care professionals via a survey that has one open question:
Based on your experiences, what problems or needs should future research address to improve the experience of people with a serious, life-limiting illness and/or those close to them?
The new project website is now live, and the survey can be accessed from there.
We are building on the previous work and what we have learned from the first Priority Setting Partnership (PSP). We will endeavour to reach more people living with serious life-limiting conditions in addition to carers and professionals. We will be more stringent in collecting demographic information from survey respondents, to understand whether we are reaching a diverse range of people. We have stepped up our involvement of people with lived experience even further and introduced a separate Lived Experience Group in addition to the Steering Group for the project. We would like to include not just interventional questions, but also questions that are more relevant to social science research. We are also lengthening the project timeline and are planning workshops with researchers once the top 10 priority areas are known, towards the end of 2024, so that we can be more specific in what questions need addressing.
Anything that you can do to help us reach a wide audience would be amazing – we want to hear from people living with a serious life-limiting illness, their families, carers and friends, and from health and social care professionals who care for them, in a specialist or generalist setting and from commissioners of services.
Progress since 2015
But you might ask what happened since the publication of the last questions:
- Marie Curie included the top 10 questions as priorities in our open calls between 2015 and 2019, with, for instance, funding of more than £1million allocated to seven projects addressing the top priority of out of hours care, culminating in the publication of the recent Marie Curie Better End of Life report focussing on out of hours care for people with advanced illness.
- In addition to the final PeolcPSP report (doi 1114905.1), we published a grant mapping report (doi 1114915.1) which mapped research grants active in 2014 (UKCRC HRCS, 2015) to the questions, highlighting that some received some current funding, others very little or none.
- Researchers from the Marie Curie Palliative Care Research Centre in Cardiff published a report, ‘Beyond the Questions’ (doi 1114916.1), thematically analysing the questions and highlighting an ‘out of scope’ topic area where survey participants had raised questions, including what palliative care is and the acceptance of dying. This sparked further work at the Centre on public perception of death and dying (Islam et al, 2021; Marie Curie, 2021).
- The NIHR took forward two specific questions from the list of 83 through NIHR commissioned calls, one on breathlessness (question 20 in the short list), which resulted in the MABEL trial; and one on how to manage respiratory secretions in patients at the end of life, which unfortunately did not result in a study being funded.
More recently, in preparation for the ‘refresh’ of the priorities, we were curious exactly how much research funding has been spent to address each of the top 11 questions and whether any of them had since been answered. We included the question ranked 11th, because it addresses an increasingly important issue, how people who live alone can receive adequate palliative care, particularly if they want to stay at home, and I remember the long discussion at the workshop at the time on whether this or the current 10th question should be included in the more visible list of top 10.
- To identify the amount of research funding that has been spent on each of the top 11 priorities since 2015, we repeated and extended the grant mapping to all relevant studies funded since 2015. We found that some funding has addressed each of the PeolcPSP top 11 priorities, but the amounts vary widely. The question on the benefits of advance care planning (number 3 in the top 10) received most funding, closely followed by the question asking how to determine palliative care need in individuals with non-cancer diseases (number 6 in the top 10). On the other hand, only one grant was funded to address the question of how best to support people living alone.
- And we worked with an Information Scientist using James Lind Alliance methodology, to identify relevant reviews addressing the questions. Much research has been published since 2015 and 20 of the 83 questions now have partial answers, but none were fully answered.
Palliative and end of life care research remains a shockingly underfunded area and whilst progress has been made to address the questions and priorities raised by carers, patients and health and social care professionals, we need to do more. In such a small research field, it is even more important that we listen to the people that research ultimately benefits, to hear their voices and to ensure the research we fund and carry out reflects their needs and priorities.
We need your help in making sure this survey reaches everyone who has questions about their care or the care they provide and about the experience of living with a serious life-limiting condition, or caring for someone who does.
So please take part in our survey and disseminate it widely to help us find out what future research on palliative and end of life care should focus on – this is your chance to shape the future of research in this area and improve end of life experiences for all.
Dr Sabine Best, Associate Director of Research Management and Impact, Marie Curie
Jodie Crooks, Research Associate, Marie Curie