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Designing a Flexible and Inclusive Approach for Public and Community Involvement in Research With People Who Are
Mel Hughes1, Kate Jupp2, Cathy Beresford2
1Faculty of Health and Social Sciences, Bournemouth University, Bournemouth, UK.
Background:
People who are homeless or vulnerably housed face significant health inequities and yet are rarely involved in health and social care research as participants, public contributors or co-researchers. The I Am More Than… project was developed to address this lack of inclusion by working in partnership with community organisations and individuals with lived experiences of being homeless or vulnerably housed.
Objective:
To co-design a flexible and inclusive approach for public and community involvement in research (sometimes referred to as public and patient involvement or PPI).
Methods:
The project drew on a range of co-production and participatory research strategies, with input from various stakeholders, to identify and address enablers and barriers to participation. Community researchers with lived experience of homelessness or being vulnerably housed were central to all stages of the project, including the co-design of strategies to engage people through conversations, interviews, creative outputs and stakeholder events.
Findings:
We identified core principles for inclusive public and community involvement in research. including the need to: develop relationships first and tasks second; gain a deep understanding of communities and their priorities; harness lived experience expertise; however someone may choose to share it; go at the pace of trust; and work in partnership with voluntary and community sector organisations who are embedded in their communities.
Conclusion:
Developing a flexible and inclusive approach to public and community involvement in research required shifting from a transactional approach to a relational approach. The project demonstrated the importance of building trust, working in partnership and being flexible and responsive to people's everyday realities for genuine inclusion to be achieved.
Patient Or Public Contribution:
This is a co-produced project between a university, an integrated care system, two community organisations and people experiencing homelessness or being vulnerably housed. Individuals with lived experience participated as community researchers, shaping the design, methods and outcomes. Their contributions are detailed throughout the paper, which is co-authored by members of the project team, including staff from two community organisations and one community researcher.
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