Why public involvement in end of life care research matters

This column was published in the Western Mail Professional Column on October 25, 2021 

The one certainty in life is that it will end. How life ends is crucially important, as the global pandemic has starkly illustrated. We know that the care and treatment given to people facing end of life, and the support their loved ones receive, greatly influences their quality of life, their sense of preparedness and wellbeing. It can also have a lasting effect on people who are bereaved.

It may come as a surprise that NHS funding for palliative and end of life care in hospices across the UK amounts to just 30 per cent of the cost; the remaining income comes from charitable donations. Palliative and supportive care is also one of the least funded areas of UK healthcare research and is very dependent on public donations through charities. To ensure that this precious investment is of maximum benefit to the people of Wales and beyond, we invite members of the public to help us with our research.

Public Involvement in research is an integral part of the Marie Curie Palliative Care Research Centre's work. For over a decade, we have engaged and worked with members of the public, such as bereaved carers and people with personal experience of cancer treatment, to ensure their lived experiences influence our studies, from inception of the research idea to dissemination of results.

Members of the public are our critical friends. They give a public perspective on how to improve things, keeping the focus on the benefits for those the research aims to serve. They help to ensure information for patients and carers is comprehensive and easily understood, and that people taking part in the research aren't burdened with excessive questions, financial or time costs, making it easier to recruit and retain participants.

Since 2014, we have worked with the Wales Cancer Research Centre to develop a model of public involvement not only in our lead research area of palliative care and patient experience, but across all types of cancer research. This means that members of the public are appointed to work with research staff in their research projects, with a further seven specialist members of the public, called Research Partners, who are trained and supported to influence research at a strategic level.

Our Research Partners are brilliantly inquisitive and challenging – bringing solutions to the table as well as questions. Involving them has been an overwhelmingly positive experience. Their approach, attitudes, and skillsets add an important and valuable dimension to patient and carer focussed research - one that is hard to measure.

Whilst those already involving the public in research understand the benefits, it can be hard to clearly illustrate the impact public involvement has to others. This widely recognised challenge hinders the public's ability to play a greater role in shaping health and social care research.

To combat this, we are developing and testing tools to help researchers capture and share the difference that public involvement makes. Our hope is that sharing these tools will encourage more people to get involved. Ultimately this will give the public a louder voice in the research that affects them, so that precious funding is spent on research that makes a real difference.

The Marie Curie Palliative Care Research Centre is funded by a Marie Curie grant. The Wales Cancer Research Centre is funded by the Welsh Government through Health and Care Research Wales.

Alisha Newman
Marie Curie Senior Team Manager and Wales Cancer Research Centre Public Involvement Academic Lead

Marie Curie Palliative Care Research Centre, Cardiff.
Email: newmana3@cardiff.ac.uk
Website: https://www.cardiff.ac.uk/marie-curie-palliative-care-research-centre