Views needed on priorities for palliative care research
Nurses are being urged to share their views on the areas of palliative and end-of-life care that need to be prioritised for research over the next few years.
The charity Marie Curie is asking for feedback from health and social care professionals who deliver this type of care, seriously ill people and their family and friends, as well as bereaved people.
“Sadly palliative and end-of-life care research is an extremely underfunded area”
Sabine Best
The responses will help the charity refresh its list of the top 10 priorities for palliative and end-of-life care research, which were last updated in 2015.
Marie Curie will use the new priorities to inform its own research-funding decisions going forward and hopes to encourage other research funders to invest in these areas.
Speaking about the project, Dr Sabine Best, Marie Curie associate director of research management and impact, said: “At Marie Curie, we know that everyone is affected by death, dying and bereavement but sadly palliative and end-of-life care research is an extremely underfunded area.
“As the UK’s largest charitable funder of this research area, we want to focus on the topics which are most important to people who are directly impacted, which is why it’s crucial for us to hear from them.
“This new survey will help us understand the specific needs of people living with a serious life-limiting illness, their carers and the health and social care professionals who support them.”
She noted how the top priority that came out of the 2015 survey was how best to support people needing palliative or end-of-life care outside of typical office hours, and that £1.5m of new research funding had been committed to this topic since then.
Marie Curie is being supported with this piece of work by the James Lind Alliance, which specifically exists to get patients, carers and clinicians involved in decisions about health research, by establishing ‘priority setting partnerships’.
Caroline Whiting, senior research manager from the JLA, said: “Our partnerships identify and prioritise unanswered questions or uncertainties that these people agree are the most important, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives.
“As we join Marie Curie for this critical project, we put the people most in need at the forefront of our work.”
The survey is open until 31 December 2023. To take part, or for more information, visit the website or contact PeolcPSP@mariecurie.org.uk.