Abstract

Around half a million individuals die each year in England, a figure estimated to rise by 20% over the next 20 years. The last decades have seen increased demand for those nearing end-of-life to experience a ‘good death’, receiving timely care focused on communication, informed care choice, pain and symptom-relief, and preferred place of death. While policy guidance has been put in place to deliver this care, a ‘good death’ has yet to be achieved by most Palliative or End of Life Care (PEoLC) patients. Less than a quarter of children and adults are able die at home, PEoLC is rarely available to those older patients living with multiple morbidities, and those living with dementia are particularly poorly served. Research has begun the identification of what works in PEoLC, although there are gaps in the evidence base. A review of National Institute of Health Research funded PEoLC studies, identified that most had yet to propose solutions that recognised the complexities of the health and care environment, while a consultation exercise carried out by the James Lind Alliance detailed 83 unanswered research questions. Further improvements in research methods are necessary (i.e., inclusion of experimental/ cost-effectiveness studies), as well as delivery of projects that involve all relevant PEoLC organisations, patients, users, and carers. In addition, research has not always been equitably delivered across geographical locations, unavailable to some areas with high prevalence of PEoLC needs. To respond to these gaps, developing research capability and capacity in an area historically undeserved by PEoLC research, we have developed a structured programme of work alongside a multidisciplinary Consortium across Suffolk and North East Essex Integrated Care System, Suffolk County Council and Waveney. This locality serves a population of around one million, encompasses rural and costal areas, diverse urban populations as well as deprived communities. The challenges facing PEoLC in this area mirror those nationally. Around half of PEoLC patients die in hospital, while those in the most deprived areas are least likely to be supported to die at home or have their preferences as to end-of-life care recorded. Our Consortium draws on expertise from across primary, secondary and hospice care, social and third sector care and ‘experts-by-experience’. Purposive sampling (using voter registration), and the provision of travel, attendance and replacement care costs will ensure equitable inclusion of ‘seldom-heard’ participants. We will deliver one Introductory Workshop, five Deliberative Workshops, and one Consensus and Writing Workshop across 11 months (from January November 2022), achieving our aim of establishing, implementing and sustaining partnerships that will build research capacity and capability across PEoLC, as well as delivering up to six outline research studies. We have selected the method of Deliberative Workshops to ensure that all participants are supported to deliver informed decisions on topics that may be unfamiliar. Outcomes from this programme of work will be a co-produced research study submitted to the Stage 2 call of NIHR. We will also identify up to five additional research studies that, through small working groups, will be further developed between January 2023 and March 2024. In addition, a paper will be submitted on the process, progress, facilitators and barriers to co-producing and building research expertise.