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

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. 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). 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. 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. Children’s health in the UK is getting worse, with rising inequalities that particularly affect racially and socially minoritised families. Yet these families are often left out of research. This is unfair and also means that research findings may not apply to those who need them most. We looked back at the TOGETHER study, a large trial of the Strengthening Families, Strengthening Communities (SFSC) parenting programme, run in six areas of England. Our aim was to understand what made the study inclusive and how we involved parents and communities in meaningful ways. We analysed information on who joined the trial and who stayed involved and reviewed five years of meeting notes from the study team and public involvement groups. We also held reflection workshops and conversations with parents in the study advisory groups, a lived-experience co-investigator, and the Race Equality Foundation, our third-sector partner. The study recruited 674 parents across 34 programmes, meeting the initial study target. The parents were very diverse: 65% were from racially minoritised backgrounds, nearly half spoke a first language other than English, and over half lived in low household incomes. We identified six things that enabled an inclusive study: (1) leadership from lived experiencoe; (2) active parent advisory groups; (3)meaningful community partnerships; (4) community-embedded researchers; (5) the Race Equality Foundation linking researchers and communities; and (6) budgets, resources, and committed leadership. The study showed that inclusive research is not separate from people’s everyday lives. During the COVID-19 pandemic, for example, parents and researchers worked together to create accessible public health newsletters to support families. The TOGETHER study shows that inclusive research is possible when communities are embedded from the start and supported with the right resources.