Last month, The Lancet Public Health published the TOGETHER study, showcasing findings from a randomised controlled trial of the Strengthening Families, Strengthening Communities parenting programme – an intervention developed by the Race Equality Foundation to support ethnically and socially diverse families. The trial ran across six urban sites in England, following the recruitment of 674 parents, the majority of whom were from minoritised ethnic backgrounds. The study showed that the programme significantly improved parental mental wellbeing, with positive effects on children and family relationships across ethnic and socioeconomic groups.
Those findings are significant, but so is how we got there.
A paper published alongside the main trial, From Tokenism to Transformation, reflects on the community engagement and public involvement work that made the study possible. As an organisation, we are proud of what was achieved, and equally clear about what it cost and what was required.
If research does not include the communities it claims to serve, it cannot tell us what works for them.
The problem with how research usually works
Racially minoritised and socio-economically disadvantaged communities are consistently under-represented in health research. An analysis of NIHR-funded trials published between 2019 and 2021 found that only 60% of trials recorded the ethnicity of participants. Among participants with recorded ethnicity, 86% were White, and just 4% were Black. This is not a minor gap – it means that the evidence base driving commissioning decisions and policy investment is built largely on the experiences of people who do not reflect the populations most affected by health inequalities. If research does not include the communities it claims to serve, it cannot tell us what works for them.
TOGETHER set out to do things differently.
What we did and what it required
Over 60% of participants in the TOGETHER study identified as Black, Asian, mixed or other minoritised ethnicities. Nearly half spoke a first language other than English. Over half lived in households with incomes below £20,000. Crucially, dropout rates did not differ by ethnicity, income or language.
This was the result of deliberate choices that were sufficiently resourced and treated as central to the research. Our Tokenism to Transformation paper identifies six enablers:
- a lived experience co-investigator embedded from the start,
- active Parent Advisory Groups drawn from the communities the study aimed to reach,
- genuine partnerships with local community organisations,
- multilingual community researchers collecting data in participants’ first languages,
- the Race Equality Foundation playing a connecting and advocacy role across the whole study,
- and dedicated budgets and leadership that valued this work throughout.
While these enablers are simple in principle, all require commitment and sustained investment in practice.
What we heard from those involved
The lived experience co-investigator on the TOGETHER study, a Black parent who had previously completed SFSC herself, was involved from the study’s conception through to dissemination, and is in fact a co-author on the paper that is the subject of this blog.
Over six years, she attended nearly every Trial Management Group meeting, co-facilitated 25 Parent Advisory Group sessions, and contributed to countless planning discussions in addition to her professional and family life. Her reflections on the experience spoke to why specific support was necessary:
“If it wasn’t for [the] Race Equality Foundation, I would have walked a long time ago. This is not just research, it’s our lives.”
She was also honest about how it felt to navigate academic spaces designed without her in mind, where the language, norms, and hierarchies hinder genuine participation. That experience is not unusual, and it is one the research community has been slow to reckon with.
The study’s three Parent Advisory Groups, consisting of around 40 parents meeting across London and the North of England over five years, both challenged and supported decisions. They identified problems with outcome measures, provided reassurance to other parents about randomisation, and during the COVID-19 pandemic, pushed the research team to take an active role in supporting participants – leading to the co-production of accessible public health newsletters shared across the study. Their collective verdict:
“Without this group, there would be no study.”
What needs to change
The TOGETHER study shows that inclusive research is achievable. The paper is also honest about its fragility. When committed individuals moved on, the emphasis on inclusive practice sometimes waned, a reminder that good intentions are not enough without the right conditions.
For those conditions to exist, several things need to change:
- Inclusion needs to be funded properly, from the start, not bolted on as an after-thought. That means budgets for community partnerships, lived experience roles, translation, and the relational work that makes participation possible.
- Academic reward systems need to recognise community engagement as a core part of research, not a peripheral activity that sits outside the metrics that drive careers.
- Third sector organisations need to be treated as genuine research partners, brought in at the design stage and resourced accordingly.
- Funders need to hold themselves and their grantees accountable for who is included or excluded from research, and why.
The TOGETHER study took five years, significant resources, and genuine commitment from everyone involved. There are no shortcuts, but there is also no longer a credible argument that it cannot be done.
The TOGETHER study was funded by the NIHR Public Health Research Programme. The main findings are published in The Lancet Public Health (April 2026). From Tokenism to Transformation is published in Research Involvement and Engagement (May 2026).
