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

Article history

The contractual start date for this research was in February 2022. This article began editorial review in July 2023 and was accepted for publication in June 2024. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The Public Health Research editors and publisher have tried to ensure the accuracy of the authors’ article and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this article.

Copyright statement

Copyright © 2024 Combes et al. This work was produced by Combes et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

2024 Combes et al.

Partnership aims and objectives

Plan

The ALLIANCE Partnership brought together people across the palliative and end-of-life care continuum who wanted to improve transitions for older people with advancing frailty as they near the end of life. The concept of transitions for older people living with advancing frailty is discussed throughout the literature, and in clinical practice, in multiple ways. These include personal biopsychosocial transitions, transitions in the focus of care or organisational responsibility for care, or transitions in the place of care. To add to this complexity, transitions are often not linear and require regular re-evaluation throughout the frailty and end-of-life trajectory. Within this Partnership, transitions across clinical and social care settings were the starting point. The importance of the biopsychosocial transitions of frailty and the attendant potential transitions in goals of care were also attended to.

Figure 1 demonstrates the breadth of the Partnership across the regions and articulates its underpinning concepts of (1) inclusivity, (2) diversity in populations, people and care providers and (3) its aim to build from the ground up.

FIGURE 1.

The partnership.

The Partnership spanned three regions (see Table 1). The specific geographies were chosen as they have historically low levels of recruitment to NIHR palliative and end-of-life care Portfolio studies, with all areas, except Nottinghamshire, below the national average (ranging from 2 to 35 recruitments per 1000 cases). Nottinghamshire was included as an area of excellence to support development in the East Midlands.

Infrastructure

The Partnership infrastructure adopted a hub and spoke approach. The hub comprised the Core group, a group of professionals in specialist palliative and geriatric care, paramedic practice, integrated care, patient and public involvement and clinical academic practice, with representatives across the clinical and academic spheres across the Partnership regions. The Core group met regularly to discuss partnership activities and share updates on key milestones, promoted ALLIANCE in their regions, identified potential ALLIANCE Partnership members, and supported the Partnership’s understanding of each region from the perspective of services supporting older people living with frailty. An Advisory group, with national-level representatives across specialist palliative and older people’s care, social care, integrated care systems, NIHR structures and patient and public involvement and engagement, provided additional support and governance. A list of Core and Advisory group members can be found in Appendix 1, Tables 10 and 11.

Spokes (known as key contacts) were key individuals within each region across the frailty pathway and end-of-life care continuum, across the integrated care system, throughout each of the three regions. Each key contact was identified for their knowledge, expertise or interest relevant to the Partnership, and links to other interested individuals in their area. Key contacts received no additional resources to fulfil this role. Appendix 2, Figure 8, illustrates the breadth of key contacts we attempted to establish and maintain throughout the Partnership.

Delivery

Key contacts were identified through multiple routes including: palliative and end-of-life care strategic clinical networks; members of the Core and Advisory groups; professional societies, for example, the Royal College of Nursing, British Geriatric Society, and Hospice Social Workers palliative and end-of-life care and frailty sections; Integrated Care System (ICS) links; NHS England; and NIHR infrastructures including Research and Development Leads, Clinical Research Networks, Applied Research Collaborations; and targeted social media.

Key contacts were established through e-mail, telephone, Zoom (Zoom Video Communications, San Jose, CA, USA), video conferencing and speaking at regional meetings to introduce the Partnership. To support key contact identification and representation across regions, we developed and refined a sampling frame and ‘script’. To identify and connect with key contacts we found we needed to work across numerous micro, meso and macro organisational levels. Web-based searches were a helpful way to connect with voluntary and social care agencies, whereas social media was found to be an effective way to connect with clinicians.

Outputs and outcomes

• Two hundred and forty-four contacts were made between 8 February 2022 and 26 May 2023 as follows:

  • East Midlands – 110

  • South East England – 76

  • South West London – 58

• Seventy-six contacts agreed to key contact status. Regional areas were as follows:

  • East Midlands – 45

  • South East England – 22

  • South West London – 9

• Coproduced ground rules for partnership working. To support collaborative working throughout the Partnership, the Core group collaboratively discussed and refined these ground rules, developed by Dr Nadia Brookes, for working together that could be developed and revised throughout the Partnership and beyond. A copy of these coproduced rules can be found in Appendix 3.

• ALLIANCE website: www.surrey.ac.uk/research-projects/alliance-enhancing-quality-living-and-dying-advancing-frailty-through-integrated-care-partnerships. This website formed the central information repository for the Partnership, enabling cross-partnership communication and sharing of best practice. It was open access to enable Partnership members to share the resources with their organisations and networks. The website also linked to the Living and Dying Well programme at University of Surrey to enable users to access these wider frailty resources in addition to those curated for the Partnership. ALLIANCE resources include research capacity and capability development, patient and public involvement and engagement, and frailty resources.

Evaluation

This objective was more complex and labour-intensive than envisaged. Significant pre-study work was undertaken between June and September 2021 and contacts were made. However, due to organisational and staff changes within key contact organisations, much of this work was lost. Having lost these contacts, the top-down approach used with some organisations added additional time as managers suggested other managers, who suggested different managers, meaning multiple calls and emails were required before the relevant people were contacted. Additionally, many senior staff within palliative care and frailty were unable to signpost us to relevant individuals as staff were seen either as palliative care focused, where frailty was rarely recognised, or frailty focused, where end of life and palliative care was rarely recognised. Further, the nature of the Partnership was difficult for people to engage with as it was not research nor service improvement. For example, many potential key contacts were very keen to be involved in research but wanted to be research sites for established research proposals rather than being part of a research proposal development process. Hardest to find were General Practitioners, social care representatives and mental health professionals.

The voluntary sector was particularly hard to reach, both regionally (as key contacts) and nationally (within the Advisory group) despite multiple attempts. We believe this is due in part to the wide-ranging brief and geography of the Partnership, meaning the voluntary sector representatives approached often did not feel able to speak for the Partnership throughout all regions. Further, we found that for some voluntary organisations, the focus of the Partnership did not meet their current strategy, or often, they perceived becoming involved in research proposal development work to be too time consuming, and felt they lacked resources, time and funding to engage meaningfully. There were however, a few regional exceptions, and we hope to develop these over the next few months, and, once the research bid writing is underway, approach a national voluntary organisation for national, as well as local, support going forward. Of the original 244 contacts, 76 individuals agreed to key contact status. Their involvement in the Partnership is detailed within the relevant objectives below.

Plan

This objective sought to understand the Partnership’s strengths, weaknesses, barriers and enablers regarding (1) current clinical services for people living with advancing frailty and (2) research readiness across the Partnership. The outcome of this objective was to ensure future Partnership research proposals were focused on clinically relevant and impactful research, and to underpin research capacity development.

Delivery

Outputs and outcomes

• Analysis of barriers, enablers and priorities regarding research capacity building and delivering care within integrated care systems.

N = 46 people responded, 9 of which stated they worked for more than one service (see Tables 2–5 and Figure 2).

FIGURE 2.

Geographic region (n = 46).

Demographics of key contacts (see Tables 2–4).

Demographics of service users: as estimated by key contacts (see Tables 6 and 7).

Description of services

Most key contacts stated their services primarily supported physical health needs for older people living with advancing frailty as they neared the end of life. Practical daily living needs were secondary to this, followed by mental health needs, and equally spiritual, religious and cultural needs, alongside other needs. The details of the needs catered for within each domain are illustrated in Appendix 4, Figures 9–13.

In addition to needs, participants were asked to specify the wider elements their service provided. More than half of all respondents said their services always addressed some form of advance or anticipatory care planning and access to mobility equipment or household modifications. The element that was least supported by all services as standard was remote telehealth services such as video consultation, although many more services stated they were able to offer this sometimes (see Figure 3).

FIGURE 3.

Which of the following elements does your service provide? (n = 49) (multiple choice).

The details of the above elements can be found in Appendix 5, Tables 12 and 13, and Figures 14–16. Details of who the services received referrals from and referred older people and carers on to can be found in Appendix 6, Figures 17–19.

Demographics of service

Key contacts were also asked if their services or organisations were involved in workforce development, and which areas of workforce development they provided (see Figures 4 and 5):

FIGURE 4.

Does your service/organisation provide education/training for … n = 56 (multiple choice).

FIGURE 5.

Does your service/organisation provide … n = 54–56 (multiple choice).  N = 54 for both outreach categories, n = 55 for support of staff/volunteers, n = 56 for appropriate information.

Evaluation

As with Objective 1, this objective was more complex and labour intense than envisaged, particularly regarding mapping the research infrastructure. Mapping and scoping current clinical service, PPIE involvement and research interest within the Partnership, was conducted using the extensive Phase 2 survey. The initial plan had been to use COM-B32 as a framework. However, the collected data spoke far more to the organisation of systems, components of services and perspectives on the enablers and barriers to delivering better care for older people with advancing frailty towards the end of life. Thus Bayley et al. ’s common components logic model,33 which details effective service delivery models for older people with advanced progressive conditions, such as advancing frailty, was used as a framework (see Figure 6).

FIGURE 6.

Service framework for older people living and dying with advancing frailty.

The mapping and scoping of national and regional research activity was time and resource heavy. We attempted to map researchers, research and infrastructure through multiple sources as noted above. However, while we connected with CRN, RDS and other infrastructure within all regions, as far as possible, existing intelligence was hard to find, and it was agreed by the Core group that this objective was not possible within the remit of the Partnership. As such, we reframed our aim and instead focused on support and, using the knowledge of Core group members, we created webinars to support Partnership members’ research development. This is discussed under Objective 3.

Plan

This objective sought to enable the Partnership both to generate research questions for Part 2 of the NIHR call, and to support Partnership members to become research ready. Research readiness was understood as a continuum from being ready to recruit participants into research studies external to the service, to services wishing to develop towards research generation.

Delivery

Outputs and outcomes

Evaluation

Regarding the generation of research questions, the initial plan was to create and administer a survey to generate the long list of questions. However, this was not required as data collected in Objective 2 was extensive and covered mapping and scoping the services, barriers, enablers and priorities regarding research, PPIE and care delivery within integrated care systems. This change to the plan was based on feedback from multiple key contacts as the best use of their time.

Regarding the database of aspiring researchers, throughout the timeline of the Partnership we lost contact with several of these research-interested individuals. We are unable to report with certainty why this was, but it is likely due to reasons such as people changing roles, clinical priorities and lack of infrastructure and resources to buy out time from clinical practice. From a Partnership perspective, it was difficult to keep interest intact throughout the three diverse regions, and the interest in the East Midlands perhaps speaks to its investment in Clinical Academic Careers and a strong, established research infrastructure. To reinvigorate interest, as discussed above, we promoted the webinars widely, for example through the British Geriatric Society and Palliative Care Research Society and established and promoted the repository.

In regard to PPIE engagement, as well as supporting services within the Partnership to embed PPIE, ALLIANCE also sought to establish engaged and meaningful PPIE throughout the Partnership on a regional and national level. There were multiple challenges, many of which are mentioned in Evaluation, Objective 1. However, while this engagement took time to grow momentum, meaningful engagement was established, specifically with regional carer organisations and, as discussed in Objective 4, by holding two PPIE events at lunch clubs. A report of PPIE representation and learning around engaging PPIE in this population at the interface between frailty and end-of-life care is included in Appendix 7. Future overarching engagement will come through using the remaining PPIE funds to support further and ongoing engagement with bid writing and growing sustained PPIE involvement within the Partnership, particularly around developing and embedding PPIE within each region and supporting ethnicity, diversity and inclusion.

Plan

This objective sought to explore and finalise the coproduced research priorities and establish the research question(s) the Partnership would develop into the bid for the Part 2 call. The outcome of this objective was coproduced, clinically applied, translational research proposals focused on enhancing palliative and end-of-life care for older people living with advancing frailty. Learning regarding the research engagement process, working across integrated care and establishing research partnerships were also to be disseminated to support ongoing research capacity development.

Delivery

A virtual nominal group technique35 was to rank and finalise the selection of research topics identified in Objective 2. A facilitated online workshop with up to 25 participants, from across ALLIANCE, including PPIE and informal carers, would use plenary and small group work to: (1) prioritise research questions and identify any omissions; (2) discuss each one to determine clarity, importance and feasibility using the FINER criteria;36 and (3) vote to prioritise the top five research questions. Proposal-writing around these top five research questions was to take place in smaller Partnership teams defined by interest and expertise, and be supported by organisational and national infrastructures, for example, Clinical Research Networks, Clinical Trials Units and the Research Design Service. Processes for disseminating and translating research into commissioning and practice were established as relevant.

Outputs and outcomes

Agreed priority questions

Rather than using the virtual nominal group technique,35 three different prioritisation methods were used. The rationale for this change is discussed in Evaluation. These methods were as follows:

• Research-orientated key contacts focused – A survey was created for professionals working within services across the integrated care system. These contacts were asked to gain feedback from their PPIE groups, if established, to support completion of the survey.

• PPIE representative focused – The above survey was refined by Dr Nadia Brookes to create a short prioritisation exercise to enable meaningful engagement by PPIE representatives.

• PPIE focused – To support the engagement of older people living with frailty and those important to them, two PPIE events were held at two lunch clubs for older people, where the short prioritisation survey (point 2 above) was used to engage with older people one-to-one. A report of these exercises is included in the PPIE summary in Appendix 7.

The engagement is detailed in Table 9.

TABLE 9 - Prioritisation exercise

Research-orientated individuals	Representatives of carers and older people	Older people	Care homes
Sent to: 25	Sent to: 24	21 older people	Sent to: 8
Responded: 11	Responded: 7	aged 75–97 years	Responded: 3
Responses from:	Responses from:	Responses from: All South West London	Responses from:
7 East Midlands	1 National		2 East Midlands
3 South East	2 East Midlands		1 South West London
1 South West London	2 South East
	2 South West London

The results of the three prioritisation exercises were then combined, as shown in Figure 7.

FIGURE 7.

Overarching research priorities. Key: blue – prioritised by older people living with frailty; green – prioritised by older people and PPIE carer representatives; orange – prioritised by research-orientated staff.

Proposal(s) written for Part 2 (and other) call(s)

 The overarching research priorities (see Figure 6) and PPIE feedback from the prioritisation exercises were used by the Core group alongside advice from the Advisory group to finalise the research question to develop into the bid for the Part 2 call. Multiple research questions were considered under these priorities, and many may be worked up in the future as research bids. However, for the Part 2 call, the ALLIANCE Partnership chose to play to its strengths: its underpinning coproduction and PPIE focus, its desire to prioritise the voices of older people living with advancing frailty and those important to them, and the strengths of the integrated care system across the Partnership regions. As such, the ALLIANCE research question combines the priorities selected by the older people and PPIE representatives and focuses on supporting services as they currently are to be better at involving older people living with advancing frailty, and those important to them, to ensure what matters most to the older person informs professional practice. Following the prioritisation and choice of research question, a virtual Discussion group was held. This was led by experienced facilitators who supported the participants, health and social care professionals and PPIE representatives to meaningfully engage with the research question in regard to what they felt was required to support services to better include older people and those important to them in professional practice.

Disseminate learning

Multiple dissemination activities have taken place and are planned for the future. These include:

• The development of multiple resources and curation of key documents which are held in the website repository www.surrey.ac.uk/living-and-dying-well-research and promoted through the Twitter account @ALLIANCE_Collab under the @LDW_Research banner.

• Presentations including at the Royal Society of Medicine PPIE webinar (18 April 2023), NIHR Research Active Hospices conference (20 June 2023) and NIHR ARC Wessex CRED talk (Care and Research Education and Debate) (23 March 2023).

• Publications including on Open Access Government37 and conference proceedings. 38

• Development of multimedia, for example the creation of films on how to support older people living with frailty to meaningfully engage with PPIE.

PPIE

While the Partnership has finished, we continue to work with PPIE representatives to understand what matters most to older people with frailty, unpaid carers and unpaid carer representatives. Most recently, building on the findings of ALLIANCE, an online workshop was held to understand and explore the knowledge and experiences of PPIE regarding holistic assessments; what matters most, what works well, and what needs to change in order to develop a research bid. A visual minute of this discussion group can be accessed here: www.surrey.ac.uk/living-and-dying-well-research/resources.

Evaluation

While the Partnership planned to use the virtual nominal group technique35 to prioritise the final research questions, this was amended to three specific prioritisation exercises. This was for several reasons. The extensive survey in Objective 2 had enabled the development of the Generation of Research Questions for Prioritisation (within Objective 3), which had allowed the Partnership to thematise the potential research questions into four broad topic areas and prioritise them. Further, on reflection with the Core group and Advisory group, it was felt that the nominal group technique would not enable the meaningful engagement of all participants across the different stakeholders. The three different prioritisation methods were used to enable different stakeholder to engage in ways that played to their strengths, and methods were altered accordingly. For example, the PPIE sessions with older people were to be a face-to-face group exercise, but when the researchers attended, they found individual conversations, that supported the person to engage, worked far better. This is discussed further in Appendix 7.

The Partnership originally planned to develop writing groups to write proposals for the top five research questions to be submitted in the round 3 funding. However, due to challenges including the labour intensity of previous objectives, the Partnership member’s research readiness, the desire to submit a bid that considers the learnings from, and plays to the strengths of ALLIANCE, and to allow time for meaningful PPIE engagement, the Partnership is instead currently writing a bid that is likely to be submitted to the Health and Social Care Delivery Research Programme funding stream. There is also the potential to work up and submit further proposals under other bid streams in the future. In regard to disseminating the findings into practice, this has already started, some examples of which have been detailed above, and will be addressed in more detail in the Part 2 call bid going forward.

Reporting equality, diversity and inclusion/patient and public involvement and engagement

Equality, diversity and inclusion (EDI) are underlying principles of the partnership. Sites incorporated geographical and socio-economic diversity. The guiding tenant of the work has been to raise the voice, concerns, and care needs of older people with frailty and their unpaid carers at end of life; currently an underserved majority in relation to receiving palliative care. ALLIANCE aspired to coproduce activities as much as possible and developed a core set of values for how the different Partnership stakeholders worked together (see Appendix 3). These values have been adapted from the coproduction principles34 and the UK standards for Public Involvement,40 and include inclusivity, empathy, reciprocity, equality and investment in relationships. Values were key to facilitating and enabling collaboration among the different groups involved in the partnership, which was underpinned by an assets-based approach, supporting the partnership to think positively and identify collective strengths and opportunities, rather than focus on problems and deficits.

The understanding of EDI and involvement of PPIE was embedded throughout ALLIANCE. Pre-Partnership, PPIE contributed to the bid in multiple ways, including articulating the need for research focused explicitly on the care of people with advancing frailty,41 and the need to improve the delivery of integrated care with particular attention to care transitions at the end of life. 27 During the Partnership activities included building and strengthening relationships, understanding barriers and facilitators to excellent care, refining the Phase 2 survey, hearing the stories of older people and those important to them in regards to the lived experience of advancing frailty, prioritising the potential research questions, and refining the final chosen research question. As part of the PPIE work to support Partnership members, but also the care of older people living with advancing frailty more generally, multiple resources were created including those now used by Hospice UK to support work with older people living with advancing frailty, a film of an unpaid carer articulating how she supported her mother living with advancing frailty to take part as a PPIE member, and a summary written on PPIE engagement within the Partnership, including two case studies from PPIE involvement work with two separate lunch clubs in South West London. Two Core group members presented at the Royal Society of Medicine’s Innovations in patient and public involvement in palliative care research event (April 2023), and going forward, PPIE representatives from carer support groups have agreed to work further with the Partnership to shape the Part 2 bid. The principle of PPIE involvement continues as we work with multiple PPIE representatives to understand what matters most to older people with frailty and unpaid carers, and develop the ALLIANCE bid.

CRediT contribution statement

Sarah Combes (https://orcid.org/0000-0002-9708-4495): Conceptualisation (equal), Funding acquisition (equal), Methodology (equal), Investigation (equal), Data curation (lead), Formal analysis (lead), Writing – original draft (lead), Writing – editing and reviewing (lead), Project administration (lead), Visualisation (lead).

Rowan H Harwood (https://orcid.org/0000-0002-4920-6718): Conceptualisation (equal), Funding acquisition (supporting), Methodology (supporting), Supervision (equal), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Louise Bramley (https://orcid.org/0000-0002-0425-1734): Conceptualisation (supporting), Methodology (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Nadia Brookes (https://orcid.org/0000-0002-6661-2814): Conceptualisation (supporting), Methodology (supporting), Investigation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Adam L Gordon (https://orcid.org/0000-0003-1676-9853): Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Diane Laverty (https://orcid.org/0000-0002-1082-3727): Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Julie MacInnes (https://orcid.org/0000-0002-9220-1007): Conceptualisation (supporting), Supervision (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Emily McKean (https://orcid.org/0000-0002-3045-296X): Project administration (supporting), Data curation (supporting), Investigation (supporting), Formal analysis (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting), Visualisation (supporting).

Shannon Milne (https://orcid.org/0000-0002-5202-4237): Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Heather Richardson: Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Joy Ross (https://orcid.org/0000-0003-1894-5953): Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Emily Sills (https://orcid.org/0000-0002-7371-0113): Conceptualisation (supporting), Writing – original draft (supporting), Writing – editing and reviewing (supporting).

Caroline J Nicholson (https://orcid.org/0000-0003-4422-413X): Conceptualisation (equal), Funding acquisition (equal), Methodology (equal), Supervision (lead), Formal analysis (supporting), Writing – original draft (lead), Writing – editing and reviewing (supporting).

Acknowledgements

We are grateful to all potential and actual Partnership members, collaborators and gatekeepers for their time, knowledge and engagement. Further thanks to the patient and public involvement and engagement representatives including Colin Hopkirk, EveryOne; Mark Turton, LinCA; Nicola Wilson, Crossroads Care; Sue McVicker, Croydon Neighbourhood Care Association; Steve Castellari, The Carers Centre; Age UK; and Carers UK. Particular thanks to the Core group: Dr Louise Bramley (Nottingham University Hospitals NHS Trust), Dr Nadia Brookes (University of Kent), Professor Adam Gordon (University of Nottingham), Dr Diane Laverty (London Ambulance Service NHS Trust), Dr Julie MacInnes (University of Kent), Dr Shannon Milne (Princess Alice Hospice), Professor Heather Richardson (St Christopher’s Hospice), Dr Joy Ross (St Christopher’s Hospice) and Emily Sills (Princess Alice Hospice). Thanks also to our Advisory group: Professor Barbara Hanratty, Professor Martin Vernon, Professor Julienne Meyer CBE, Dr Jo Zamani, Dr Caroline Chill and the Venerable Dr Justine Allain Chapman.

Data-sharing statement

All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.

Ethics statement

As this was not a research study, it did not require ethics approval.

Information governance statement

The study did not handle any personal information.

Disclosure of interests

Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/ACMW2401

Primary conflicts of interest: None declared.

Department of Health and Social Care disclaimer

This publication presents independent research commissioned by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, NIHR Coordinating Centre, the Public Health Research programme or the Department of Health and Social Care.

This article was published based on current knowledge at the time and date of publication. NIHR is committed to being inclusive and will continually monitor best practice and guidance in relation to terminology and language to ensure that we remain relevant to our stakeholders.

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.

About this article

The contractual start date for this research was in February 2022. This article began editorial review in July 2023 and was accepted for publication in June 2024. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The Public Health Research editors and publisher have tried to ensure the accuracy of the authors’ article and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this article.

Copyright

Copyright © 2024 Combes et al. This work was produced by Combes et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

ALLIANCE core values to support coproduction and working together

A number of values will guide ALLIANCE and the ways in which participants work together: inclusivity, empathy, reciprocity, equality and investment in relationships. These values will be key to facilitating participation, establishing trust and enabling collaboration amongst the different groups involved in the partnership. Underpinning this will be an assets-based approach to support the partnership to think positively, identifying collective strengths and opportunities rather than problems and deficits.

The project phases

Information regarding PPIE that supplements the main report is detailed under each objective below.

Patient and public involvement and engagement-specific resources

A 2-hour webinar took place on 24 April 2023 (webinar 2). This webinar was free and open to all health and social care professionals interested in involving older people living with advancing frailty, and their informal carers, in research, evidence development and service improvement. The webinar looked at why including older people living with advancing frailty in evidence building is key to improving care for this population. Speakers included an older person living with advancing frailty explaining how they feel this population could best be engaged with evidence building, and an informal carer explaining how she supported her mother to be an active member of a PPIE steering group. The webinar also included a top tips session that shared creative methods for engagement, resources and local as well as national contacts, and provided time for participants to share good practice, network and focus on what might help them to support PPIE in their service or organisation.

Other PPIE-specific resources, including webinar documentation and films, alongside research readiness and frailty resources can be found here: www.surrey.ac.uk/living-and-dying-well-research/resources

Challenges of engaging patient and public involvement and engagement

Mapping the voluntary organisations who are dedicated to older people and their carers was laborious and involved extensive internet searching and cold calling. Some numbers were central information numbers for clients to use and therefore did not go through to a person. If messages were left no one would respond as it was not the purpose of those phone lines. Therefore, one agency may be contacted multiple times before speaking to the appropriate person. There is no central information about these agencies and how to contact them beyond their front-end, client-facing website information.

In order to engage older people in research, it is important to go to them and speak face to face. However, the extent to which we could engage directly with older people who would be classified as living with advancing frailty, and their carers, was limited by the short timeframe of the partnership and minimal resources. For example, it was not possible to travel to all nine areas, most of which involved a lengthy commute, due to the complexity of the early Partnership objectives and resources.