Title: ALLIANCE: Enhancing the quality of living and dying with advancing frailty through integrated care partnerships: Building research capacity and capability
Funder: Department of Health and Social Care

Abstract: Aim:_x000D_ To grow a research Partnership of care providers that will improve the coordination of end-of-life care for older people living with advancing frailty in the community._x000D_ _x000D_ Background:_x000D_ Frailty is a state of vulnerability that lowers physical and mental ability and leads to an increased risk of disability and admission to hospital or a care home. Frailty affects 10% of people aged over 65, increasing to around 65% of people aged over 90. Death from frailty is common. Someone with advancing frailty may need help from others such as help around the home or going out, or they may be completely dependent on others for personal care. Living with advancing frailty often means having multiple care needs that require care from multiple providers and sectors for example, the NHS, social services and the not-for-profit sector. However, this care is often patchy and not joined up, meaning families often need to provide and coordinate care. These factors can lead to poor quality of life for people with frailty and their families. Little research has studied how to best support and care for people with advancing frailty as they near the end of life, particularly as they move between care providers and sectors. Our new Partnership will support care providers and individuals to 1. grow research skills. 2. establish what we need to know to provide joined up health and social care 3. write clear research proposals and 4. be ready to lead or help with these studies._x000D_ _x000D_ The Partnership:_x000D_ Our Partnership brings together areas in regions of England (South East England, South West London and the East Midlands) that, according to NIHR statistics, are underrepresented in end of life research. Partnership members are care providing organisations across the NHS, social care and the not-for-profit sector, universities, and frail older people and their families. We will be supported by Integrated Care Systems, which are new government bodies designed to improve the way local care organisations work together. Our Partnership is community-focussed as this is where most older people wish to live out their final years._x000D_ _x000D_ Activity and Outcomes:_x000D_ Over a 15-month period we will work with Partnership members to grow research skills and knowledge, and agree what research needs to be done. We will:_x000D_ _x000D_ • Establish the Partnership, including identifying and connecting all key contacts (months 1-2)_x000D_ • Investigate and chart current research capability, and current care provision, to understand what helps and what hinders Partnership care providers to 1. get involved in research and 2. work together to support those living with advancing frailty (months 3-9)_x000D_ • Carry out activities such as: developing and supporting patient and public involvement and engagement (PPIE) in research within each region, jointly developing guidelines, and delivering training to support Partnership members to become more research confident (months 6-12)_x000D_ • Agree future research priorities and prepare research proposals for NIHR funding (months 12-15)_x000D_ _x000D_ Involving People:_x000D_ Older people and their networks are central to every activity. A key outcome is that each region will be helped to develop local PPIE systems to support the Partnership and future research. PPIE development will follow NIHR PPIE principles and be led by an expert in the field._x000D_ _x000D_ Dissemination:_x000D_ We will work with all Partnership members to agree how and where best to tell people about our work and learning e.g. research informed practice events and public engagement activities

Lay abstract: Aim: To develop a sustainable, cross-sectoral partnership focused on: 1. identifying priorities to improve the delivery of integrated care and care transitions for older people living with advancing frailty, 2. developing organisations in which to conduct this research._x000D_ _x000D_ Background: Older people with advancing frailty have complex needs which require integrated health, social and third sector care, and a palliative care approach that is orientated towards living with, as well as dying from, advancing frailty. This Partnership brings together areas with historically low levels of P&EoLC research: Berkshire West, Isle of Wight, East Sussex (SE England); Kingston, Croydon, Richmond (SW London); and Derbyshire, Lincolnshire, Nottinghamshire (East Midlands). Partnership members include stakeholders across the NHS, social and third sector care, local government, and academic institutions. The Partnership will use a co-production approach, embed patient and public involvement and engagement (PPIE), and draw on Cooke’s framework for developing research capacity in care settings, ready to submit research proposals to the NIHR._x000D_ _x000D_ Objectives and methods:_x000D_ Phase 1 Working together: To establish the Partnership infrastructure and identify key contacts within each region across the P&EoLC continuum (months 1-2) We will hold educational and networking events for practitioners and researchers. We will identify key contacts in each provider service, co-produce ground rules for working together, and create the ALLIANCE website._x000D_ _x000D_ Phase 2 Learning together: To understand the strengths, weaknesses, barriers and enablers of research readiness and current clinical services for people with advancing frailty (months 3-9) We will map and scope each care provider’s: 1. current research activity e.g. key people, organisational infrastructures, PPIE, regional/national research infrastructures/opportunities; and 2. range of clinical services for frail older people and identify care pathways. Barriers, enablers and priorities will be established using the COM-B framework of behaviour change._x000D_ _x000D_ Phase 3 Growing together: To support provider services to become research-ready (months 6-12) Activities to support capacity building will include ‘buddying’ more experienced provider services with research-naïve ones; working with R&D/R&I departments to provide bespoke training; co-producing strategies/guidelines; establishing skill sharing/knowledge exchange programmes; signposting individuals/organisations to established opportunities/infrastructures; embedding PPIE within regions._x000D_ _x000D_ Phase 4 Building together: To establish research questions across the Partnership and develop research proposals (months 12-15) We will use surveys and focus groups to establish research priorities and questions to inform co-produced, high quality, clinically applied research proposals._x000D_ _x000D_ Overarching outcome: Established a cross-sectoral, research-ready Partnership to deliver co-produced, clinically applied translational research focused on enhancing the quality of living and dying with advancing frailty._x000D_ _x000D_ Anticipated impact and dissemination: Anticipated impact includes the development of a critical mass of research-ready provider services. Learning will be disseminated in multiple ways e.g. local dissemination strategies, ALLIANCE website, PPIE and conferences; national infrastructures e.g. ARCs; and academic papers.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE