A changing sector
Despite the hurdles, there are many examples of effective inclusion, paving the way for both the curious and the disenchanted. One such example can be found in the healthcare system itself.
The GPs at the Deep End network, founded by Professor Graham Watt in Scotland, assists general practices in some of the most deprived areas to tackle health inequities. As co-lead of their Bristol arm, Shoba is heavily invested in achieving this ambition through increasing research participation within these practices. “Part of the challenge is supporting practices to become more research active. Too often, researchers rely on the same, well-established sites for recruitment, meaning practices in deprived areas are often left out, meaning we inadvertently perpetuate inequities by excluding those already underrepresented,” she explains. Alongside this, the network funds year-long health equity fellowships, enabling clinicians to lead quality improvement projects focused on health inequalities. The network also works with local communities.
And then there’s the Trial Forge Guidance 3, which offers a practical framework for recruiting and retaining participants from ethnic minority groups. Led by Shoba and grounded in the community input, it stands as a strong example of how effective engagement can strengthen research inclusion, helping to ensure it is both meaningful and genuine. This guidance sits neatly alongside a recent qualitative study co-authored by Shoba, suggesting differences between ethnic groups are often less pronounced than assumed. In many cases, the barriers aren’t about ethnicity at all, but about trust. The STRIDE project goes a step further, offering clear recommendations for deciding which ethnic groups to include and in what proportions.
Inclusive research remains a priority for many researchers and centres across the country. At a methodological level, initiatives such as the Trial Forge Inclusive Research Centre led by Shoba aim to build and strengthen the evidence base for approaches to improve inclusivity in trials, particularly around recruitment and retention.
Lack of national coordination or infrastructure creates duplication, missed learning and limited collective impact. Drawing on the example of funders aligning around patient and public involvement, Shoba suggests a similar, coordinated approach could help drive progress in equity, diversity and inclusion.
There’s a growing catalogue of resources and initiatives to support researchers. Institutions must keep pace, investing in a diverse and well-trained research workforce capable of driving inclusion and building and sustaining partnerships as opportunities expand.
Where to next?
There is clear momentum behind community engagement and inclusion. Across the sector, work is underway to define how inclusion should be reflected in funding and ethics processes. Shoba is contributing to this, working with funders to develop practical examples for grant and ethics applications, alongside prompts for peer reviewers and committee members. These emerging approaches aim to support both applicants and decision-makers, recognising that embedding inclusion requires consistency not just in how research is designed, but in how it is assessed.
But could we be going further? What would it take to rethink not just how we involve and include communities in research, but how research itself is shaped?
For Shoba, this means looking to approaches more widely adopted in countries such as the US, Australia and New Zealand – particularly community-based participatory research (CBPR).
At its core, CBPR moves away from individual involvement towards community-led or community-partnered research. “It’s about empowering communities to identify the problems that matter to them and to be part of shaping the solutions,” says Shoba. Some may be more familiar with the role of a community researcher, an individual contributor, often with lived experience, working within a traditional researcher-led project. While these roles are gaining traction across the UK, they operate within existing structures. For Shoba, approaches such as CBPR represent a more fundamental shift, offering a route towards deeper, system-level change.
Ultimately, building genuine inclusion, meaningful engagement and sustained collaboration will require a multi‑pronged approach. Progress is likely to come through a combination of incremental change and more fundamental shifts concludes Shoba. “The direction of travel is clear, to be inclusive we must consider who shapes research and who that research ultimately serves.”
