Shaping the future of palliative care research

What’s the project about?

In 2013/14, Marie Curie worked with the James Lind Alliance (JLA) and more than 30 other organisations to identify the top 10 unanswered research questions, or evidence uncertainties, in palliative and end of life care.

These priorities, published in a report in January 2015, have been influential in the field of palliative and end of life care research, influencing, for instance, strategic funding opportunities from the two largest funders of palliative and end of life care research in the UK, the NIHR and Marie Curie.

It’s been 9 years since the publication of the top 10 evidence, and the priorities are now being reviewed, in light of changes to health care, and the effects of COVID-19.

This project aims to understand from a range of people working in, receiving, or affected by end-of-life care what is important to them. It And what topics should be prioritised within research.

Last year, Marie Curie published a survey, asking people about which questions are important to them.

79 questions have been identified, and researchers now want to know which are the most important to you.

Who can take part?

You can take part if you

• Are living with a serious life-limiting condition (including, but not limited to cancer, organ failure such as heart, liver or kidney failure, dementia, Parkinson’s, chronic obstructive pulmonary disease (COPD) or Motor Neurone Disease). You don’t have to be receiving palliative care

• Are caring for a loved one or someone you know who has a serious life-limiting condition

• Have had a family member or someone close to you who’s died of a life limiting condition

• Are a volunteer supporting people with serious life-limiting illnesses

Why do you want me to be involved?

About 90% of people at the end of life could benefit from palliative and end of life care, but only 0.23% of research funding is spent in this area.

That's why it's so important that the research Marie Curie funds in this area addresses the priorities of people who have lived experience of living with a serious life-limiting illness, to improve care for everyone in the future.

The survey will help them understand what's most important and where we should prioritise research projects.

What will you ask me to do?

The researchers would like you complete and online survey. In the survey, you’ll be asked to look at the questions which have been identified in the first stage of the project, and rate how important they are to you.

The results from this survey will be discussed at an in person event in November. At this event, the project leads hope to create a top 10 that they hope to use to influence funding for future research in this field.