From tokenism to transformation: lessons from the TOGETHER study for building inclusive and equitable research

Abstract

Background: children’s health in the UK is in decline, with widening inequities disproportionately affecting racially and socially minoritised families. These same communities are often excluded from research, compromising both fairness and scientific validity. Patient and public involvement and engagement (PPIE) has been promoted as a mechanism to address exclusion, but in practice it can replicate existing inequalities. There is limited evidence on what inclusive research looks like in practice. This paper reflects on the TOGETHER study—a large, multi-site randomised controlled trial of the Strengthening Families, Strengthening Communities (SFSC) parenting programme—exploring the strategies and processes that supported equitable engagement.

Methods: we used a reflective, retrospective case approach informed by: (i) descriptive analysis of trial baseline data (recruitment, retention, participant demographics); (ii) analysis of five years of study meeting minutes; and (iii) two facilitated reflective workshops with parent advisory groups, the lived-experience co-investigator, and the Race Equality Foundation (third-sector partner).

Results: the trial successfully recruited 674 parents across 34 programmes, meeting 100% of the target. The sample was both ethnically and socially diverse: 65% of participants identified as Black, Asian, mixed or other minoritised ethnicities; nearly half reported a first language other than English; and over half live with household incomes below £20,000. Attrition rates were 28% at post-intervention and 30% at six-month follow-up. Six key enablers were identified: (1) lived experience leadership through a co-investigator; (2) public involvement via local Parent Advisory Groups (3) relational partnerships with community organisations; (4) multilingual community researchers supporting linguistically and culturally inclusive data collection (5) strategic support from a third sector organisation, the Race Equality Foundation, and (6) investing in inclusion through dedicated budgets, resources, and visible, supportive leadership. These enablers helped ensure high recruitment, strong retention, and meaningful participation with families often excluded from research.

Conclusions: the TOGETHER study demonstrates that inclusive research is possible when lived experience, community voices, and third-sector expertise are embedded and resourced from the outset. Inclusion required investment of time, money, and infrastructure, as well as leadership that valued relationships and reflexivity and researchers positioned not as detached observers but as relational actors within participants lived contexts. Our reflections highlight the potential and the tensions of embedding equity in research, offering practical insights for researchers, funders, and institutions seeking to move beyond tokenism towards transformation.

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Identifiers

ORCID for Donna Clutterbuck: orcid.org/0000-0001-5622-3076

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