{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T09:09:10Z","timestamp":1788772150034,"version":"build-2803163510"},"reference-count":38,"publisher":"National Institute for Health and Care Research","license":[{"start":{"date-parts":[[2024,10,1]],"date-time":"2024-10-01T00:00:00Z","timestamp":1727740800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001921","name":"Public Health Research programme","doi-asserted-by":"publisher","award":["NIHR135262"],"award-info":[{"award-number":["NIHR135262"]}],"id":[{"id":"10.13039\/501100001921","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journalslibrary.nihr.ac.uk"],"crossmark-restriction":false},"short-container-title":[],"abstract":"\n Background<\/jats:title>\n 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.<\/jats:p>\n <\/jats:sec>\n \n Aims<\/jats:title>\n To develop a sustainable, cross-sectoral partnership to:<\/jats:p>\n \n \n identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty<\/jats:p>\n <\/jats:list-item>\n \n develop organisations in which to conduct research<\/jats:p>\n <\/jats:list-item>\n \n submit study proposal(s) for funding.<\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:sec>\n \n Objectives<\/jats:title>\n \n \n To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care.<\/jats:p>\n <\/jats:list-item>\n \n To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty.<\/jats:p>\n <\/jats:list-item>\n \n To support provider services to become research ready.<\/jats:p>\n <\/jats:list-item>\n \n To establish Partnership-wide research questions and develop research proposals.<\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:sec>\n \n Activities<\/jats:title>\n \n The Partnership brought together experts, by profession or experience (\n n<\/jats:italic>\n \u2005=\u2005244), 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.\n <\/jats:p>\n \n A survey of key contacts (\n n<\/jats:italic>\n \u2005=\u200576) mapped and scoped the Partnership\u2019s strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers\u2019 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 (\n n<\/jats:italic>\n \u2005=\u200521), unpaid carer representatives (\n n<\/jats:italic>\n \u2005=\u20057), health, social and voluntary care professionals (\n n<\/jats:italic>\n \u2005=\u200511) and care home representatives (\n n<\/jats:italic>\n \u2005=\u20053). 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.\n <\/jats:p>\n <\/jats:sec>\n \n Reflections<\/jats:title>\n 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\u2019 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.<\/jats:p>\n <\/jats:sec>\n \n Funding<\/jats:title>\n This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262.<\/jats:p>\n <\/jats:sec>","DOI":"10.3310\/acmw2401","type":"journal-article","created":{"date-parts":[[2024,6,21]],"date-time":"2024-06-21T05:45:54Z","timestamp":1718948754000},"page":"1-31","update-policy":"https:\/\/doi.org\/10.3310\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Building research capacity and capability to enhance the quality of living and dying addressing advancing frailty through integrated care: the ALLIANCE partnership"],"prefix":"10.3310","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9708-4495","authenticated-orcid":true,"given":"Sarah","family":"Combes","sequence":"first","affiliation":[{"name":"University of Surrey, Guildford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4920-6718","authenticated-orcid":true,"given":"Rowan H","family":"Harwood","sequence":"additional","affiliation":[{"name":"The University of Nottingham, Nottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0425-1734","authenticated-orcid":true,"given":"Louise","family":"Bramley","sequence":"additional","affiliation":[{"name":"The University of Nottingham, Nottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6661-2814","authenticated-orcid":true,"given":"Nadia","family":"Brookes","sequence":"additional","affiliation":[{"name":"University of Kent, Canterbury, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1676-9853","authenticated-orcid":true,"given":"Adam L","family":"Gordon","sequence":"additional","affiliation":[{"name":"The University of Nottingham, Nottingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1082-3727","authenticated-orcid":true,"given":"Diane","family":"Laverty","sequence":"additional","affiliation":[{"name":"London Ambulance Service NHS Trust, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9220-1007","authenticated-orcid":true,"given":"Julie","family":"MacInnes","sequence":"additional","affiliation":[{"name":"University of Kent, Canterbury, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3045-296X","authenticated-orcid":true,"given":"Emily","family":"McKean","sequence":"additional","affiliation":[{"name":"University of Kent, Canterbury, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5202-4237","authenticated-orcid":true,"given":"Shannon","family":"Milne","sequence":"additional","affiliation":[{"name":"Princess Alice Hospice, Esher, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Richardson","sequence":"additional","affiliation":[{"name":"St Christopher\u2019s Hospice, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1894-5953","authenticated-orcid":true,"given":"Joy","family":"Ross","sequence":"additional","affiliation":[{"name":"St Christopher\u2019s Hospice, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7371-0113","authenticated-orcid":true,"given":"Emily","family":"Sills","sequence":"additional","affiliation":[{"name":"Princess Alice Hospice, Esher, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4422-413X","authenticated-orcid":true,"given":"Caroline J","family":"Nicholson","sequence":"additional","affiliation":[{"name":"University of Surrey, Guildford, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"6221","published-online":{"date-parts":[[2024,10]]},"reference":[{"key":"key2026090711413600_ref1-bib1","doi-asserted-by":"crossref","first-page":"752","DOI":"10.1016\/S0140-6736(12)62167-9","article-title":"Frailty in elderly people","volume":"381","author":"Clegg","year":"2013","journal-title":"Lancet (London, England)"},{"key":"key2026090711413600_ref2-bib2","doi-asserted-by":"crossref","first-page":"162","DOI":"10.1093\/ageing\/afu148","article-title":"Prevalence of frailty and disability: findings from the English Longitudinal Study of Ageing","volume":"44","author":"Gale","year":"2014","journal-title":"Age Ageing"},{"key":"key2026090711413600_ref3-bib3","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s12916-017-0860-2","article-title":"How many people will need palliative care in 2040? Past trends, future projections and implications for services","volume":"15","author":"Etkind","year":"2017","journal-title":"BMC Med"},{"key":"key2026090711413600_ref4-bib4","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1177\/0269216317734435","article-title":"What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death","volume":"32","author":"Bone","year":"2018","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref5-bib5","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1093\/ageing\/afw039","article-title":"Development and validation of an electronic frailty index using routine primary care electronic health record data","volume":"45","author":"Clegg","year":"2016","journal-title":"Age Ageing"},{"key":"key2026090711413600_ref6-bib6","volume-title":"The NHS Long Term Plan","author":"National Health Service","year":"2019"},{"key":"key2026090711413600_ref8-bib8","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1111\/1468-0009.12373","article-title":"Service delivery models to maximize quality of life for older people at the end of life: a rapid review","volume":"97","author":"Evans","year":"2019","journal-title":"Milbank Q"},{"key":"key2026090711413600_ref9-bib9","first-page":"75","article-title":"When frailty should mean palliative care","volume":"3","author":"Pialoux","year":"2013","journal-title":"J Nurs Educ Pract"},{"key":"key2026090711413600_ref10-bib10","doi-asserted-by":"crossref","first-page":"152","DOI":"10.1016\/j.critrevonc.2006.06.002","article-title":"Does age matter in palliative care?","volume":"60","author":"Teunissen","year":"2006","journal-title":"Crit Rev Oncol Hematol"},{"key":"key2026090711413600_ref11-bib11","doi-asserted-by":"crossref","first-page":"1173","DOI":"10.1056\/NEJMoa0909087","article-title":"Trajectories of disability in the last year of life","volume":"362","author":"Gill","year":"2010","journal-title":"N Engl J Med"},{"key":"key2026090711413600_ref12-bib12","doi-asserted-by":"crossref","first-page":"e44","DOI":"10.3399\/bjgp17X694145","article-title":"GPs\u2019 perceptions of advance care planning with frail and older people: a qualitative study","volume":"68","author":"Sharp","year":"2018","journal-title":"Br J Gener Pract"},{"key":"key2026090711413600_ref13-bib13","doi-asserted-by":"crossref","first-page":"734","DOI":"10.1177\/0269216311412233","article-title":"An uncertain future: the unchanging views of care home residents about living and dying","volume":"26","author":"Mathie","year":"2012","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref14-bib14","doi-asserted-by":"crossref","first-page":"e012576","DOI":"10.1136\/bmjopen-2016-012576","article-title":"What determines duration of palliative care before death for patients with advanced disease? A retrospective cohort study of community and hospital palliative care provision in a large UK city","volume":"6","author":"Bennett","year":"2016","journal-title":"BMJ Open"},{"key":"key2026090711413600_ref15-bib15","volume-title":"A Different Ending: Addressing Inequalities in End of Life Care. Overview Report","author":"Care Quality Commission","year":"2016"},{"key":"key2026090711413600_ref16-bib16","doi-asserted-by":"crossref","first-page":"e757","DOI":"10.3399\/bjgp20X712805","article-title":"The difference an end-of-life diagnosis makes: qualitative interviews with providers of community health care for frail older people","volume":"70","author":"Polak","year":"2020","journal-title":"Br J Gener Pract"},{"key":"key2026090711413600_ref17-bib17","first-page":"216","article-title":"How good is UK primary care at identifying patients for generalist and specialist palliative care: a mixed methods study","volume":"20","author":"Zheng","year":"2013","journal-title":"Eur J Pallat Care"},{"key":"key2026090711413600_ref18-bib18","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1177\/0269216313510341","article-title":"Place of death and end-of-life transitions experienced by very old people with differing cognitive status: retrospective analysis of a prospective population-based cohort aged 85 and over","volume":"28","author":"Perrels","year":"2014","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref19-bib19","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1093\/intqhc\/mzw060","article-title":"Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem","volume":"28","author":"Cardona-Morrell","year":"2016","journal-title":"Int J Qual Health Care"},{"key":"key2026090711413600_ref20-bib20","doi-asserted-by":"crossref","first-page":"j878","DOI":"10.1136\/bmj.j878","article-title":"Palliative care from diagnosis to death","volume":"356","author":"Murray","year":"2017","journal-title":"BMJ"},{"key":"key2026090711413600_ref21-bib21","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1016\/j.jpainsymman.2011.08.006","article-title":"Older adults\u2019 experiences of transitions between care settings at the end of life in England: a qualitative interview study","volume":"44","author":"Hanratty","year":"2012","journal-title":"J Pain Symptom Manage"},{"key":"key2026090711413600_ref22-bib22","article-title":"Effectiveness and cost\u2010effectiveness of home palliative care services for adults with advanced illness and their caregivers","volume":"2013","author":"Gomes","year":"2013","journal-title":"Cochr Datab Syst Rev"},{"key":"key2026090711413600_ref23-bib23","volume-title":"What Is Integrated Care","author":"Shaw","year":"2011"},{"key":"key2026090711413600_ref25-bib25","doi-asserted-by":"crossref","first-page":"19","DOI":"10.5334\/ijic.2609","article-title":"Understanding integrated care","volume":"16","author":"Goodwin","year":"2016","journal-title":"Int J Integr Care"},{"key":"key2026090711413600_ref26-bib26","doi-asserted-by":"crossref","first-page":"475","DOI":"10.1177\/02692163221118230","article-title":"Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: a scoping review","volume":"37","author":"Nicholson","year":"2023","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref27-bib27","first-page":"40","article-title":"Older people with severe frailty talking about their palliative care needs: an interview and survey study during the COVID-19 pandemic","volume":"35","author":"Green","year":"2021","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref29-bib29","volume-title":"Comparing the Effectiveness of Palliative Care for Elderly People in Long Term Care Facilities in Europe","author":"European Commission","year":"2018"},{"key":"key2026090711413600_ref30-bib30","volume-title":"EU Navigate, Supporting Older People with Cancer: A European Project Investigating Navigation Programmes in Different EU Countries","author":"EU Navigate","year":"2024"},{"key":"key2026090711413600_ref31-bib31","volume-title":"End of Life Care for Adults: Service Delivery [NG142]","author":"National Institute for Health and Care Excellence","year":"2019"},{"key":"key2026090711413600_ref32-bib32","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/1748-5908-6-42","article-title":"The behaviour change wheel: a new method for characterising and designing behaviour change interventions","volume":"6","author":"Michie","year":"2011","journal-title":"Implement Sci"},{"key":"key2026090711413600_ref33-bib33","doi-asserted-by":"crossref","first-page":"e048417","DOI":"10.1136\/bmjopen-2020-048417","article-title":"Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review","volume":"11","author":"Bayly","year":"2021","journal-title":"BMJ Open"},{"key":"key2026090711413600_ref34-bib34","volume-title":"Guidance on Co-producing a Research Project","author":"National Institute for Health Research","year":"2021"},{"key":"key2026090711413600_ref35-bib35","volume-title":"Lab Activity 1: Development of Online Priority Setting Workshop \u2013 Lessons Learned Report","author":"James Lind Alliance (JLA)","year":"2021"},{"key":"key2026090711413600_ref36-bib36","first-page":"14","article-title":"Conceiving the research question and developing the study plan","volume":"4","author":"Cummings","year":"2013","journal-title":"Design Clin Res"},{"key":"key2026090711413600_ref37-bib37","doi-asserted-by":"crossref","first-page":"28","DOI":"10.56367\/OAG-037-10492","article-title":"New approach to older people\u2019s end of life care: living and dying well","volume":"37","author":"Nicholson","year":"2023","journal-title":"Open Access Govern"},{"key":"key2026090711413600_ref38-bib38","article-title":"P-31 ALLIANCE: enhancing the quality of living and dying with advancing frailty through integrated care partnerships","volume":"12","author":"Combes","year":"2022","journal-title":"BMJ Support Palliat Care"},{"key":"key2026090711413600_ref39-bib39","doi-asserted-by":"crossref","first-page":"269","DOI":"10.1191\/026921601678320241","article-title":"Palliative care and geriatric medicine: shared concerns, shared challenges","volume":"15","author":"Seymour","year":"2001","journal-title":"Palliat Med"},{"key":"key2026090711413600_ref40-bib40","volume-title":"UK Standards for Better Involvement in Research: Better Public Involvement for Better Health and Social Care Research","author":"National Institute for Health Research","year":"2019"},{"key":"key2026090711413600_ref41-bib41","volume-title":"Conversations on Living and Dying: Facilitating Advance Care Planning for Community-Dwelling Older People with Frailty","author":"Combes","year":"2018"}],"container-title":["Public Health Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/njl-admin.nihr.ac.uk\/document\/download\/2046447","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.journalslibrary.nihr.ac.uk\/sites\/journalslibrary\/files\/journal_data\/ACMW2401\/ACMW2401.xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/njl-admin.nihr.ac.uk\/document\/download\/2046447","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T08:23:22Z","timestamp":1788769402000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.journalslibrary.nihr.ac.uk\/phr\/published-articles\/ACMW2401"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,10]]},"references-count":38,"alternative-id":["10.3310\/ACMW2401"],"URL":"https:\/\/doi.org\/10.3310\/acmw2401","relation":{},"ISSN":["2050-439X"],"issn-type":[{"value":"2050-439X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,10]]},"assertion":[{"value":"This content has been made freely available to all.","name":"free","label":"Free to read"},{"value":"02-2022","name":"contractual_start_date","label":"contractual_start_date","group":{"name":"article_history","label":"Article History"}},{"value":"07-2023","name":"editorial_review_begun","label":"editorial review begun","group":{"name":"article_history","label":"Article History"}},{"value":"06-2024","name":"accepted_for_publication","label":"Accepted for publication","group":{"name":"article_history","label":"Article History"}}]}}