1 Introduction

This paper shares critical reflections, insights and lessons learned from the I Am More Than… project; a collaboration between people with lived and living experience of being homeless or vulnerably housed, volunteers and staff who support them; and health and social care providers and researchers, to co-design a flexible and inclusive approach to research participation and public and community involvement (sometimes known as public and patient involvement or PPI). The project is a response to the inclusive research agenda and the need for communities underserved by research to lead in co-designing how they want to be involved if more diverse participation is to be achieved. The title I Am More Than… came from community researchers (with lived experience of the topic being explored) who identified the starting point for having a voice in research as being seen as more than homeless.

2 Aim

This paper focuses on the iterative process of developing flexible and inclusive ways of working to engage people with experience of being homeless or vulnerably housed as community researchers and participants to achieve Aim 1 to create inclusive shared spaces, and what this entailed.

The paper is written from the perspectives of the community partners and a community researcher, with some co-authors' voices kept distinct to highlight these specific perspectives.

The project is part of the Research Engagement Network (REN) Programme, an initiative by NHS England providing funding to integrated care systems (ICSs) across England to bring the voice of people and communities into health and care research [1, 2], with additional funding to embed the approach from the NIHR's Clinical Research Network Wessex. I Am More Than… started in October 2023 and is now in its third phase, with funding for Phase 4 starting in June 2025. Findings from Phases 2 and 3 (aligned to Aims 2 and 3, respectively) are explored in separate papers (pending publication) and include examples such as 18 changes to the local ICB's working with communities vision document, reflecting a shift from a listening approach to more active collaboration with marginalised communities. Phase 4 will enable us to evidence how the implementation of this way of working across multiple health research projects is effective in increasing the diversity of public and community involvement in research (in this case, specifically people who are homeless and vulnerably housed) and in addressing health inequalities through the research design they inform.

Through all phases of the project, specialist community partners The Lantern Trust and The HealthBus Trust worked with Bournemouth University to recruit, mentor and support 11 community researchers with lived experience of homelessness or being vulnerably housed, to undertake conversations within their communities and to share their findings with research and health and social care providers leading to the involvement of more than 125 people. Community researchers were offered the flexibility to be involved without specific expectations or requirements for regular or ongoing commitment. This study formed the basis of an approach to harnessing the lived experience expertise of people with experience of being homeless or vulnerably housed in health and social care research across Dorset, a largely rural and coastal county, in the south of England, recognised for high levels of homelessness [3, 4].

3 Background

From the start, we acknowledged the significant health and social inequities faced by people who are homeless or vulnerably housed and their frequent absence from research participation. The I Am More Than… project, sought to actively involve people in research to provide a deeper understanding of the challenges and ensure that strategies to increase diverse participation were co-designed. Beresford [5], highlighted that if diversity and the barriers to diversity are not addressed, ‘participation is likely to be partial, and reflect broader social divisions and exclusions’. Not seeking lived-experience expertise or involving people in research risks reinforcing rather than addressing health and social inequities. Approaches to public involvement in research (or PPI) are typically designed by those within the research community, seeking to invite people to become involved. The I Am More Than… project sought to flip the power by starting with homeless communities to design how they want to be involved and then creating opportunities to educate and build capacity within the research workforce to make this happen. From the outset, our approach was for this to be community-led, with the university partners providing support and guidance rather than setting the agenda.

4 The Approach

Table 1 explains the I Am More Than… approach developed through this iterative co-design process. These principles evolved throughout the project from the underpinning methodology, which recognises the distinction between system world and lifeworld priorities and motivators [24]. In the system world, research is often seen as a clearly defined process: objective, and transactional, with participants providing data for researchers, frequently resulting in an unequal power dynamic [25]. In the lifeworld, people collaborating on projects have their motivations and desired outcomes, which need to be identified and acknowledged. Lifeworld priorities are typically based on values, relationships, communication and everyday realities. The project prioritises lifeworld principles by adopting the approach that people with lived experience and community partners determine priorities and direction, with academic researchers providing support, reversing traditional power dynamics [26]. At the start of Phase 2, and ahead of a second co-delivered stakeholder event, all those involved in the project team (including the community partners) sought to identify what the emerging approach was and was not.

These principles were identified by the communities involved as essential to an approach that is community rather than system-led. A participatory approach is at the heart of the I Am More Than… project, but differs in that it is an inclusive and participatory approach to public and community involvement (often referred to as PPI). In 1969, Arnstein developed the pioneering Ladder of Participation, which demonstrated how citizen participation leads to citizen power in the decisions affecting their lives [27]. However, Arnstein herself acknowledged the simplicity of her approach, which implied a linear and hierarchical participation process. The reality can differ, particularly when working in participatory ways with individuals who are frequently excluded and disenfranchised, such as those experiencing homelessness.

Since Arnstein, understandings have evolved to offer a less hierarchical view of participation, recognising that involvement varies depending on the situation, and full citizen control is not always the only or desired outcome [28-30]. The I Am More Than… project focused on creating opportunities for voices to be heard, valuing all contributions and ensuring they make an impact. Flexible, fluid pathways were developed within this project to meet individuals where they are, promoting greater diversity in participation while offering progression for those seeking deeper or more regular involvement. We found that any attempt at more structured involvement was either viewed as system-led or top down and imposed, and not of direct benefit to the homeless people involved, or reduced the level of engagement due to the nature of people's lives and their need for more ad hoc involvement, especially at the start.

Participatory research involves an evolving, collaborative process where diverse voices question the subject of study and the methods used. A key element is learning together to drive action, which requires creating supportive, relational spaces to generate new knowledge, which is just as relevant to creating an approach to public and community involvement in research. Different perspectives come together, and critical reflection and consideration of the possibilities beyond current realities are encouraged [31]. As with the system and lifeworld concept [24], involvement requires the creation of shared spaces where all priorities can be acknowledged and addressed. In the I Am More Than… project, this approach was central to providing an environment where individuals could contribute to co-produced knowledge and reflect on their experiences.

At the heart of the success of I Am More Than… is partnership working with community organisations, building on the existing trusted relationships between them and the community they serve. The methodology acknowledges the ‘messiness’ of participatory approaches and community involvement, particularly with groups that face exclusion. Working in partnership means that rather than shying away from challenges and complexities, we have worked together, drawing on each other's expertise and skills to acknowledge and embrace them. Responsiveness and inclusivity have required flexibility and adapting to the needs of the individuals, for example, by creating fluid opportunities where people can dip in and out of a role depending on personal circumstances. The role of each community organisation's outreach or project workers has been invaluable. Being embedded in the organisation, a place of trust and repeated points of support for the everyday life challenges faced by people who are homeless or vulnerably housed, has meant that chance conversations, contributions in parallel, and being able to pick up on passions, ideas and concerns can happen as they surface, supporting spontaneity and reducing barriers and formality of having to attend set meetings. The project aimed to ensure that everyone who wanted to contribute could do so in a way that was right for them. Keeping the door open is essential for shifting power and moving beyond more traditional, formal approaches to involvement [32] and did lead to four community researchers becoming more regularly involved in meetings, workshops, stakeholder events and co-authoring papers and outputs, as and when they chose to.

Collaborating with community partners and people with lived experience in the project requires resources for community organisations and the infrastructure to be in place to support sustainability. Part of our learning has been to shift attention from involving a single individual as a public contributor to research projects—a practice that can bring significant risk to the individual in terms of emotional labour and burden of involvement, to one that seeks to engage a diverse range of voices from a wider community, with the support of the voluntary and community sector organisation—an approach we concluded was more likely to address health and social inequalities, reduce the emotional labour of involvement and have greater impact.

5 The Feel

In developing an inclusive approach to diverse public and community involvement based on lifeworld motivators, we learned to prioritise experiences of and feelings about involvement [33]. Central to our philosophy is the ‘feel’ of the project, grounded in the shared principles and values of relationship first, task second and going at the pace of trust. This relational approach has been embedded at all levels and stages of the project—it is not simply ‘rolled out’ when in contact with people experiencing homelessness. It is an approach that is role-modelled throughout, from project steering group meetings, to conversations on the pavement outside a community drop-in, and in all external communications, enabling others less familiar or more sceptical, to experience ‘the feel’ firsthand and in their familiar environment.

This lifeworld approach prioritises positive and validating experiences for people, avoiding the transactional or extractive models that we found often leave individuals feeling exploited and questioning the value of their involvement in future research, compounding existing barriers to participation. While inclusive involvement can sometimes be challenging and uncomfortable [34], the project team worked hard to co-create an atmosphere where everyone involved felt valued and heard. This centres on ensuring agency to contribute, with all individuals truly listening to one another and co-designing how best to act, leading to change [35].

6 Methods

Articulating the I Am More Than… approach to public and community involvement is complex, and Table 1 illustrates the principles. As an iterative process to co-designing inclusive ways of working, we created reflexive spaces for all project members to contribute to its evolving design, including meetings, workshops and one-to-one support. Throughout this process, we continually assessed our adherence to the core values of an inclusive participatory approach, enabling us to identify key facilitative features and recognise when system challenges were obstructing them.

Ethical approval was obtained from the University's Research Ethics Committee to undertake and publish findings from the project and was conducted according to the University's Research Ethics Code of Practice.

7 What This Way of Working Involved

8 Findings

In the I Am More Than… approach, we found that the community organisations were best placed to know what, where, who and how community research could work with the people supported by their services. How this worked in practice depended on the needs of community organisations, the workers and the community researchers, which changed over time as confidence and trust grew or as new people joined the project team.

We learned that taking time to unpick and understand how people and community partners want to be involved can accelerate the development of trust and understanding of the community's priorities and concerns. Individuals and community partners must not be left feeling they have been used and discarded. Partnering with community organisations has been fundamental to the success of the project. We found that only with established, trusted relationships will a community organisation risk their relationship with the community they serve by being involved in research. Involvement in research is not risk-free; it must be explored together to provide the foundations of building trusting and lasting partnerships, working with benefits for all involved.

We found that the I Am More Than… approach is centred around its flexibility, the strength of the community partnerships and the openness of the system world partners to change processes and practices to facilitate more inclusive and flexible forms of public and community involvement. This is explained in more detail in the ‘Community Reflections’.

9 The Approach in Action—Community Reflections

10 Final Reflections and Insights

Undertaking the I Am More Than… project has been described by those involved as rewarding, humbling and challenging. The approach required all stakeholders to reflect critically on themselves, their view of homelessness and working with marginalised communities and to explore different ways of engaging with people. As recommended by the National Institute for Health and Care Research (NIHR) [37] and Co-Production Collective [38], we have thought beyond traditional notions of what it means to be inclusive and collaborative. Flexibility, sitting with discomfort and thinking outside of the box have been critical. This can be particularly challenging for those of us who prefer clarity, clear guidance and processes offered by the system world. We have found that working with people who are marginalised or have complex lives requires a more adaptive approach, which acknowledges what is most important to them, grounded in their reality, rather than in the demands of the system world. The role of those of us facilitating the involvement is to be able to buffer the different needs and priorities of the system and the lifeworld. We have learned that it is okay to hold a meeting when one person turns up because cancelling would jeopardise the trust, devalue lived experience expertise and contradict the relationship-first approach. We found that momentum builds, and more people get involved. It is about embracing challenges and collaboratively identifying pinch points to address uncertainty effectively, rather than deferring issues that may later become bigger barriers. Challenges are not failures but opportunities for growth and learning.

11 Conclusion

The I Am More Than… inclusive approach to public and community involvement in research demonstrates that for health and social care research to be inclusive and involve people experiencing homelessness or being vulnerably housed, it helps to work collaboratively with community partners, prioritising trust, relationships and flexibility. The challenges and barriers encountered in the I Am More Than… project were significantly outweighed by the benefits and opportunities it presented. Recognising difficulties and actively seeking collaborative solutions are crucial for success. A key learning point for us has been that there is no one-size-fits-all approach; being open, flexible and responsive is essential. True inclusivity and responsiveness requires providing opportunities for community researchers to contribute on their terms as much or as little as they feel able to at any given time, ensuring their involvement is meaningful and accommodating to their circumstances. An inclusive approach to public and community involvement in research, based on lifeworld priorities and motivators, acknowledges difficulties, embraces the ‘messiness’ of the situation and creates a positive feel for people to come together to be involved in research.

Author Contributions

Mel Hughes: conceptualisation, investigation, funding acquisition, writing – original draft, methodology, visualisation, writing – review and editing, formal analysis, project administration, data curation, supervision, resources. Kate Jupp: conceptualisation, investigation, funding acquisition, writing – original draft, methodology, visualisation, writing – review and editing, formal analysis, project administration, data curation, supervision, resources. Cathy Beresford: writing – original draft, writing – review and editing, visualisation, project administration, supervision, data curation. Jim Robertson: investigation, writing – original draft, conceptualisation, writing – review and editing. Annabel Wathen: conceptualisation, investigation, writing – original draft, writing – review and editing, visualisation, methodology, project administration, supervision, resources. Tanya Bailey: conceptualisation, investigation, writing – original draft, methodology, visualisation, writing – review and editing, project administration, supervision, resources. Siobhan Lennon-Patience: funding acquisition, conceptualisation, writing – review and editing, visualisation, methodology, project administration, data curation, supervision, resources. Mike Graham: funding acquisition, writing – review and editing, conceptualisation, visualisation, supervision, resources. Deano Pickering: conceptualisation, funding acquisition, visualisation, writing – review and editing, supervision, resources. Helena Posnett: funding acquisition, writing – review and editing, conceptualisation, methodology, visualisation, project administration, supervision, resources.

Conflicts of Interest

The authors declare no conflicts of interest.