ALLIANCE: Enhancing the quality of living and dying with advancing frailty through integrated care partnerships: Building research capacity and capability

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;
4. Be ready to lead or help with these studies.

Our partnership brings together three diverse regions of England that, according to NIHR statistics, are underrepresented in end of life research: South East England, South West London and the East Midlands. 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.

Activity and outcomes

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:

• Establish the partnership, including identifying and connecting all key contacts (months 1-2).
• Investigate and chart current research capability and current care provision to understand what helps and what hinders partnership care providers to work together to support those living with advancing frailty and get involved in research (months 3-9).
• Carry out activities such as developing and supporting patient and public involvement and engagement (PPIE) within each region, jointly developing guidelines, and delivering training to support partnership members to become more research confident (months 6-12).
• Agree future research priorities and prepare a research proposal for NIHR funding (months 12-15).

Involving people

Older people and their networks are central to every activity. A key outcome is that each region will be helped to develop local patient and public involvement and engagement (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.

Dissemination

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.