New joint project to review barriers to research participation in palliative care

22nd November 2023

NHS Norfolk and Waveney ICB development project aiming to reduce the structural barrier to research participation for people with impaired capacity approaching the end of life has been successfully funded.  

Dr Caroline Barry, Palliative and End of Life Care Clinical Advisor at NWICB and Associate Clinical Professor at NNUH, has led a team which have been awarded £95,000 from NHS England as part of the Research Engagement Network development programme. This is the third successful application the ICS research and evaluation team has made to the programme over the past year.

The collaborative project brings together expertise from, Dr Zena Aldridge, the ICB Frailty, Older people and Dementia Clinical Advisor and Dr Clara Yates, Associate Director of Research. The team also includes colleagues from the Mental Health Trust (Norfolk and Suffolk NHS Foundation Trust), the Norfolk and Norwich University Hospital (NNUH), NIHR CRN East of England, charity partner the Anne Robson Trust and technology company AAH software.

The project will review barriers to research participation in adults towards the end of life who have impaired mental capacity, including those who live in care homes as well as patients in hospital or those being cared for in a hospice. There will be a particular focus on the challenges introduced by social isolation and use of digital platforms.

Dr Barry, Palliative Care Consultant at NNUH, said: “It is essential to involve those who lack capacity within research to improve care and treatment, so that our research opportunities are inclusive, and our evidence is not limited to those with capacity or less advanced disease. Towards the end of life this can be particularly challenging, especially in care settings that are not normally involved in research.

She added: “Despite this, there are some great local examples of successful research studies that we are keen to learn from, with the aim of developing transferrable recommendations that can be scaled nationally.”

The project will bring together a large group of stakeholders and will develop methods to monitor and measure changes in research participation in this group.  The project will also investigate how volunteers may be used to help increase participation by consulting the Anne Robson Trust who work in partnership with acute hospitals to provide Butterfly Volunteers. Butterfly Volunteers support patients receiving end of life care in hospital, and their families. 

Clara Yates, Associate Director of Research at NHS Norfolk and Waveney said: “We’re delighted to have been awarded this funding and work with Caroline who has valuable experience in Palliative Care. The project is made up of a group of stakeholders with experience of producing sustainable solutions in partnership with their communities. We are all committed to ensuring that the results of this work are shared widely and help those designing future research projects so opportunities to take part in research are available to all.”