From tokenism to transformation: lessons from the TOGETHER study for building inclusive and equitable research
File(s)
Published version
Author(s)
Type
Journal Article
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.
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.
Date Issued
2026-12-01
Date Acceptance
2026-03-16
Citation
Research Involvement and Engagement, 2026, 12 (1)
ISSN
2056-7529
Publisher
BMC
Journal / Book Title
Research Involvement and Engagement
Volume
12
Issue
1
Copyright Statement
© The Author(s) 2026. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
License URL
Identifier
10.1186/s40900-026-00871-y
Subjects
Health inequalities
Inclusion
Public involvement
Equity
PPIE
EDI
RCT
Community engagement
Parenting
Third sector
Publication Status
Published
Article Number
ARTN 60
Date Publish Online
2026-03-30