New joint project to review barriers to research participation in palliative care
Dr Caroline Barry, a Clinical Associate Professor (jointly supported by NNUH and Norwich Medical School), has been awarded £95,000 from NHS England as part of the Research Engagement Network development programme. The programme aims to remove the barriers to inclusion for groups who are underrepresented in research participation.
The collaborative project, led by Dr Barry, includes the Norfolk and Waveney Integrated Care Board, NNUH, UEA, Norfolk and Suffolk Foundation Trust, NIHR CRN, the Ann Robson Trust and technology company AAH software.
The project will review barriers to research participation in adults towards the end of life who have limited 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 measures to monitor and measure changes in research participation. The project will also investigate how volunteers may be used to help increase participation by consulting the Ann Robson Trust who work in partnership with NNUH 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 N&W ICB, 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.”