Title: North East Palliative and End of Life Care Collaborative
Funder: Department of Health and Social Care

Abstract: When death is approaching, health and social services aim to help people to come to terms with illness, manage pain and other issues, and have a comfortable death. End-of-life care needs are greater, and more complex in poor areas. Providing services is often difficult in remote or rural areas. The North East has all these problems, across country and coast, cities and industrial zones. Some of these areas are amongst the poorest in Europe. Despite all these challenges, end-of-life care research in the North East is not well developed. This is important, because research plays a role in promoting high quality care, and shaping new services. Our proposal tackles that gap, with a plan to grow palliative and end-of-life care research in an area where patients and families are likely to benefit._x000D_ _x000D_ Our aim is to develop strong and lasting links between researchers and the people who provide palliative and end-of-life care, and to encourage more people into this area of research. We will develop proposals for research to improve people’s experiences at the end-of-life in the North East and beyond._x000D_ _x000D_ How will we do this? _x000D_ We will bring researchers with the right skills and interests from Newcastle and Northumbria Universities together with people from all the relevant hospice, primary and social care and hospital services. We also have input from the Research Design Service, and other National Institute for Health Research funded units in the North East to help with all aspects of research training and conduct, and sharing findings (Clinical Research Network, Innovation Observatory, School for Public Health Research, Biomedical Research Centre, Applied Research Collaboration and Policy Research Unit Older People and Frailty)._x000D_ _x000D_ Our five strands of work are:_x000D_ _x000D_ Promote a long-lasting research culture in North East palliative and end-of-life care_x000D_ A series of meetings about research methods and findings will spark interest and thinking, and offer training, particularly for people new to research. We will have a particular focus on supporting social care and allied healthcare practitioners._x000D_ _x000D_ Making best use of data_x000D_ People are often cared for in different places (e.g. home, care home, hospital, hospice) at the end-of-life, but information about care is not always joined up. Linked data can help improve care, and be useful for research. We will interview people in strategic roles about what is needed to make these linkages, and the time, funding and agreements that would be needed. _x000D_ _x000D_ A searchable database _x000D_ We will work with the NIHR Innovation Observatory to create a searchable database of palliative care innovations/intelligence_x000D_ _x000D_ Patient and public involvement (PPI) _x000D_ A PPI partner group will help shape our research, and develop new ways of working that are fit for end-of-life and palliative care._x000D_ _x000D_ Developing research project proposals _x000D_ An event will be held to bring researchers and practitioners together to kickstart at least one research proposal. We will start with regional priority areas - care of older people with frailty, multiple long-term conditions and social inequalities. _x000D_ _x000D_ Outputs_x000D_ This award will produce at least one research and three fellowship proposals, insights into data linkage and a useful database open to all. It will offer learning opportunities and support for practitioners to experience research. Longer term success will be measured by the quantity and quality of end-of-life research in the region

Lay abstract: Background_x000D_ The North East is one of the most disadvantaged areas of England. End-of-life care needs are shaped by high levels of disability, physical and mental ill-health, in some of the most extreme urban/rural/coastal contexts. To support innovation and evidence-based practice, a critical mass of palliative and end-of-life care research expertise is needed. This is missing in the North East - our application begins to address that gap. _x000D_ _x000D_ Aims and programme of work_x000D_ Our aim is to develop research and capacity in the North East to enhance local and national palliative and end-of-life care. _x000D_ Our objectives are to:_x000D_ • Develop a self-sustaining research culture in North East palliative and end-of-life care _x000D_ • Evaluate our data infrastructure and identify areas for development_x000D_ • Develop end-of-life research collaborations around older age, frailty, multiple long-term-conditions and inequalities_x000D_ • Convene a diverse patient and public advisory group and identify training needs_x000D_ • Support NIHR Innovation Observatory (NIHRIO) to develop a searchable platform for palliative care intelligence/_x000D_ • Produce at least one research and three fellowship applications to submit in stage 2_x000D_ _x000D_ Methods_x000D_ Working with patient and public partners and key stakeholders from local NHS Trusts, hospices, social care, our NIHR infrastructure (Applied Research Collaboration (ARC), Innovation Observatory (NIHRIO), School for Public Health Research, (SPHR) Comprehensive Research Network (CRN), Research Design Service (RDS)), we will use established and innovative approaches, to develop partnerships and palliative/ end-of-life care research with real world impact. _x000D_ _x000D_ Work package 1. Fostering and sustaining a research culture (Months 1-12)_x000D_ Online/in-person events/seminars (n=6) accessible to people with limited research experience, will stimulate ideas, offer an educational component and provide a focus for regular networking. Involving research-interested social care and allied healthcare practitioners will be a priority._x000D_ _x000D_ Work package 2. Evaluating our data infrastructure (Months 0-4)_x000D_ We will interview key stakeholders (<15) to understand potential barriers/opportunities, and resources required to link north east hospice data to other routine data sources, to support future research. _x000D_ _x000D_ Work package 3. Developing ScanPalliative – a research resource (Months 0-12) _x000D_ We will support NIHRIO to develop a searchable platform of palliative care innovations, intelligence insights and research findings._x000D_ _x000D_ Work package 4. Developing research project proposals (Months 0-12)_x000D_ A ‘sandpit’ event will be hosted with the ARC North East and North Cumbria and RDS, to bring research methodologists and practitioners together to kickstart at least one research proposal in our existing areas of strength –frailty, multiple long-term conditions and social inequalities. _x000D_ _x000D_ Work package 5. Patient and public involvement (PPI) group development (Months 0-12)_x000D_ A diverse community of PPI partners (10-20 members) will be supported to develop innovative approaches to PPI, tailored to end-of-life care, and identify their own training needs. _x000D_ _x000D_ Anticipated impact and dissemination_x000D_ This project will be a catalyst for North East palliative/end-of-life care research and practice partnerships to be sustained with funding success. A better understanding of the issues around data linkage and a searchable platform for palliative care research intelligence will have national impact

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE