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.

Resources

This partnership co-designed multiple resources that focus on how to build evidence in clinical practice, and how to engage with meaningful patient and public involvement and engagement. These can be accessed using the links below.  The final link takes you to a number of useful frailty resources. If you would like to know more about the partnership and our findings, you can read our paper or download it from the link below.

• Research article - plain language summary (PDF)
• Research article - final paper (PDF).

Useful evidence-building resources

• Evidence building and research in practice: increasing knowledge and engagement PowerPoint presentation (PDF)
• Suport available from the RDS PowerPoint presentation (PDF)
• Thinking outside the box...(PDF) 

Useful PPIE resources

• A guide to why it's important to include the voices of older people living with frailty in research and service improvement projects, the challenges you might face, and top tips for engaging older people living with frailty. 
• The ARC KSS ‘A selection of systematic reviews for Researchers, Services and Commissioners’ - See pages 11-12 for reviews relating to frailty/severe illness/end of life. Ludwig et al (2021) of particular interest if looking at the ethical aspects of involving older people. Covers the four principles: Autonomy, non-maleficence, beneficence, justice. 
• The ARC South London collection of resources. ‘A collection of resources to support public involvement in research for researchers, non-researchers and public contributors (PDF)’. Resources are groups under the headings ‘Involvement in research’, ‘Equity diversity and inclusion in research’, ‘Evaluating research’, ‘Research ethics’, ‘Implementing research into practice’. It also indicates if the resource is guidance, event, book/e-book, podcast, training, webpage or toolkit. 
• The ARC KSS PCIE Guide. Contents include why and when to do PCIE, how to do PCIE including recruitment, EDI, facilitating meetings, ethics, feedback, impact. Examples and case studies are also included. 
• The ARC KSS PCIE Resources page. All PCIE resources gathered in one place. There is helpful information on how to get started with PCIE and a jargon buster.
• The ARC KSS co-production resources and information. There is a helpful leaflet for prospective PCIE called ‘Co-Production: Together we are better - a leaflet for the public.’ There is also ‘Co-production case studies: A retrospective review of case studies carried out within the ARC KSS’ which has case studies of previous projects involving co-production and may be helpful when setting up and thinking about how to include patients and public.
• PPIE contact details (PDF)
• Engaging older people with advancing frailty with evidence building: Learning, local links and  top tips (PDF) 
• How to RRS can help (PDF)
• ALLIANCE webinar (PDF)

Useful frailty resources

• Resource to support health and social care professionals and others provide high quality care for older people living with advancing frailty
• NHS England frailty resources
• Identifying and assessing frailty
• Tools that can be used to explore and measure what matters to older people living with frailty 
• A range of useful resources, including a set of downloadable infographics about living longer
• Report looking at the state of ageing in 2022
• Link to Hospice UK's Extending Frailty Care programme that includes lots of resources and key links 

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.