Building research capacity and capability to enhance the quality of living and dying addressing advancing frailty through integrated care: the ALLIANCE partnership.

BACKGROUND

Frailty affects around 10% of people aged over 65 years, increasing to 65% of those over 90 years. This number is increasing. Older people with frailty are projected to become the largest future users of care services as they near end of life. Living with frailty increases vulnerability to sudden deterioration, fluctuating capacity and mortality risk. This leads to complex needs, requiring integrated care, and an approach orientated towards living with, as well as dying from, advancing frailty. However, accessing care in a timely manner can be difficult.

AIMS

To develop a sustainable, cross-sectoral partnership to: identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty develop organisations in which to conduct research submit study proposal(s) for funding.

OBJECTIVES

To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care. To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty. To support provider services to become research ready. To establish Partnership-wide research questions and develop research proposals.

ACTIVITIES

The Partnership brought together experts, by profession or experience ( = 244), across specialist palliative and geriatric care and local government, to improve the delivery of integrated care for older people with advancing frailty as they near end of life. Members included older people with frailty, unpaid carers, health, social and voluntary care professionals and academics, across the East Midlands, South East England and South West London. A survey of key contacts ( = 76) mapped and scoped the Partnership's strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers' research readiness. Forty-six key contacts responded. Most worked in the East Midlands (59%), in health care (70%) and in the community (58%). Survey findings were used to develop a service framework and to create a short list of potential research questions. Questions were refined and prioritised through coproduction with frail older people ( = 21), unpaid carer representatives ( = 7), health, social and voluntary care professionals ( = 11) and care home representatives ( = 3). The question chosen for bid development focused on ensuring what matters most to older people with frailty informs service development. This bid is currently being written. Partnership members were also supported to develop research readiness and enhance meaningful patient and public involvement by the development and curation of multiple resources.

REFLECTIONS

This work was challenging. The Partnership enabled the collaboration of diverse stakeholders and fostered opportunities to improve end-of-life care for older people with advancing frailty. However, the fluidity of the workforce, lack of finance to buy-out key contacts' time, limited service integration across sectors, lack of common language and concepts across sectors, need to build research understanding and readiness, and minimal evidence of engaging frail older people approaching end of life in determining service provision and research, made achieving the initial goals overly ambitious. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty, and is currently coproducing a clinically applied, translational research proposal.

FUNDING

This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262.