Disrupting patterns of exclusion in participatory spaces: Involving people from vulnerable populations

The World Health Organization promotes the involvement of individuals, families and community groups and organizations in decisions about their health to optimize health equity.1, 2 This is relevant and impactful for health and social care services, health policy and health services research. There are multiple approaches used to investigate and support people's involvement in these areas. These include coproduction, participatory research, engaged scholarship and integrated knowledge translation. Despite their differences, these approaches have strong similarities given their emphasis on the importance of meaningful partnerships based on core values and principles, such as cocreation, reciprocity, trust, active participation and shared decision-making from project start to finish.3, 4 While more and more individuals, family members, patients and communities are getting involved in such partnerships, there is a concerning pattern of exclusion. There are ‘usual suspects’ (white, middle-class, able-bodied people) who appear in research teams or coproduction groups for service or policy development.5 There are others from lower socioeconomic groups, diverse cultural backgrounds or who have vulnerabilities due to medical conditions, who are considered ‘hard to reach’, or as Lightbody et al.,6 suggest ‘easy to ignore’.7, 8 This pattern of exclusion overlooks the resilience, capabilities and agency of people from these groups and the ways in which opportunities for involvement can be more evenly spread. In this Editorial, we reflect on this status quo using the concept of participatory space. Drawing on the rich literature about participatory space from geography and development studies,9-13 this concept emphasizes that space has physical, social and temporal dimensions that influence interactions in a space, such as: what location is selected for interactions and decision-making; what sociocultural norms influence how stakeholders interact with each other and what power dynamics shape how comfortable stakeholders are sharing decisions with each other. This concept has been used by contemporary health services researchers to deepen understanding of participation regarding research, service development or community health.14-21 We utilize the concept of participatory space here to appraise examples of involving people from vulnerable populations in projects to (i) ‘think through’ issues of power and (ii) identify ways to advance the field so that opportunities for involvement in health decision-making are more equitable and impactful. First, we consider who is in spaces for sharing decisions about research, services and policy in this special issue. There are papers with lead authors from seven countries: the United Kingdom,22-28 Australia,29-33 Canada,34-38 the United States,39, 40 the Netherlands,41, 42 France43 and Ecuador.44 There are important examples involving people who experience homelessness,22, 23, 34 people who have disabilities,26, 41, 42 people who live in socioeconomically disadvantaged circumstances35, 37 and people who are migrants and/or from ethnic minority groups.25, 31, 36 There are also papers involving people with diabetes who experience stigma because of their condition30 and COVID vulnerable populations, such as those with genetic, undiagnosed and rare disorders.39 This shows that hard-to-reach groups can, of course, be included in participatory spaces. It does happen and it is important to learn from each other about innovative and best practices. It is important to consider that all of these examples in this Special Issue appear to reflect invited or hybrid spaces for participation.12, 15 This means that the project was either initiated and controlled by professional stakeholders (an invited space) or it was initiated by professional stakeholders with a strong commitment to grassroots perspectives and decision-making (a hybrid space). Usher and Denis's37 work is most interesting in this regard because they provide a novel emphasis on network building led by community actors. This shows the power, agency and collective action that underpins bottom-up or taken spaces.12 To advance the field, we encourage more in-depth and nuanced analyses of ‘space-making’. Second, what kind of methods are used in projects based on these partnerships? The papers report systematic reviews,23-25 original research using qualitative, quantitative and mixed-methods studies26, 29-31, 34-37, 39-42 and reflective practice.22 This resonates with a key finding in the wider literature about meaningful partnerships3, 4: collaborative research orientation is the core issue rather than the nature of the methods being used. Thus, to advance the field, it is important that health researchers and stakeholders in service planning and policy making are clear that there is scope for all people's involvement in all projects. This will disrupt conservative or cautious notions that partnerships with people in vulnerable circumstances are possible ‘here’ but not ‘there’. Third, how is partnership enacted? Wykes et al.40 and Manalili et al.36 draw on two overarching models from the family of participatory research approaches that have explicit intentions to attend to power asymmetries between stakeholders: community-based participatory research and participatory action research, respectively. Usher and Denis37 and Worsley et al.26 align their work with coproduction and Heerings et al.42 with experienced-based codesign. Other authors do not make such formal alignment with any overarching approach but describe the use of methodologies that are drawn from, or resonate with, these approaches because they are designed to support dialogues and colearning between diverse stakeholders (e.g., Pillen et al.30 describes the use of qualitative deliberative democratic methods, while Dawes et al.22 describes the use of Kolb's reflective model). Other authors report the adaptation of existing methods and tools to make them more suitable for, and sensitive to, the specific needs of a patient or community group. This includes Heerings et al.'s42 adaptation of experience-based codesign to involve people with independent living experiences—people with ID, serious mental illness and older people—in a participatory quality improvement initiative. Hudon et al.'s35 adaption of patient-reported outcome measures, a primary tool in the philosophy of patient-centred care so that the administration of the tool gained sensitivity without compromising its psychometric properties, and Meulendijks et al.41 move beyond the status quo of paper or digital booklets to the involvement of children with brain injury in care decisions by developing wonderfully innovative brain puzzles and avatars. It was clear that the enactment of partnerships in these papers was shaped by physical dimensions. Dawes et al.22 highlight the value of using venues that were familiar to participants to optimize their voice in the project work. There were multiple examples too of temporal dimensions shaping involvement. It was particularly striking to see the ways in which projects were designed to give diverse stakeholders time to talk together, tell stories or have arguments and counter-arguments about their topic of interest.22, 26, 30, 36, 42 Social dimensions were acknowledged and addressed by training community brokers to support fieldwork with culturally diverse groups36 and by using diverse methods for data generation and colearning ranging from more traditional qualitative interviews to the innovative use of arts-based methods.42 These examples elucidate the various ways in which power shapes, and is shaped by, the various dimensions of participatory spaces. Finally, it was clear from some papers that structural factors will enable or constrain meaningful partnerships. Health service reconfigurations disrupted long-standing relationships.37 Health research funding is not yet designed to fully support stakeholders' work to initiate or sustain partnerships.26 Thus, to advance the field, macrolevel changes are needed in the ecosystem for health research, service and policy development to optimize physical, temporal and social dynamics in participatory spaces. In turn, this will optimize the chance that people from vulnerable populations will be included in spaces for health decision-making, just like everyone else.

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