It was during her time as a methodologist specialising in evidence synthesis at Bristol Medical School that she realised exclusion extended beyond healthcare and PPIE itself. “The problem of exclusion” she says. “was an issue for research participation, too.”

Spurred on to take her first role as equity, diversity and inclusion lead for a study into acute lower respiratory tract infections, Shoba set out to ensure local community groups had a seat at the table. “Collaborating with organisations who engage diverse communities and amplifying their work is integral to promoting inclusivity in research by improving access and trust, which can support more inclusive participation” she says.

Shoba’s work in this space is vast. And it’s by drawing on this experience that she’s been able to identify core tenets to inclusive research that others can use as a guiding principle. Inclusion, she says, is rooted in relationships that provide mutual benefit – it’s vital to avoid tokenism and build trust.

One-off efforts aren’t enough – relationships must be invested in and sustained over time she says. “Building meaningful relationships with communities must be reciprocal. That can be as simple as starting with what matters to them, for example, running a session on topics they want to learn about before introducing your own research.”

Frequently, community members are motivated by access to clear and accessible information. This shapes much of the outputs that support inclusive participation in research, from guidance documents to video explainers and multilingual resources.

When these approaches translate into increased participation, the impact of widening participation cannot be overstated. Shoba has seen participants express surprise at being able to contribute to research despite language barriers. Through community engagement, she has witnessed groups shift towards considering participation after just a single session. “The interventions don’t need to be huge,” says Shoba. “Inclusion is not inherently difficult, but perhaps we are simply not investing the time and resources needed to make it work in practice.”

The responsible parties

So, whose role is it to ensure research reflects community needs in practice?

Most of Shoba’s early work in this space was voluntary. She took on the work of building and maintaining relationships with communities to keep links alive and conversations going “even,” she says, “when there was not much to report on.”

Now, when approaching new community groups, Shoba often encounters the legacy of earlier interactions, where relationships have felt transactional rather than reciprocal. Rather than placing this on individuals, she situates it within the broader context of research systems that rarely allow for the time and continuity needed to build meaningful, lasting connections.

She has experienced this first-hand. “Ironically, I hadn’t fully considered my own position,” she reflects. “I began on a nine-month contract and, despite being deeply invested in maintaining those conversations, didn’t think through how to sustain them once my position ended.”

Many researchers will recognise this challenge. Even with genuine commitment, sustaining relationships with communities can mean negotiating time and support within institutions. This raises a broader question of responsibility: should inclusion rest with individual researchers, or be shared across institutions, government and funders? Without a shift in priorities, progress will remain inconsistent and reliant on individual effort rather than embedded in systemic support.

Community and engagement strategies signal that universities and institutes acknowledge their role in research inclusion. The Research Excellence Framework has echoed this shift in recent years through its ‘engagement and impact’ component, designed to capture how research benefits society. Yet this sits alongside a system that still heavily weights traditional outputs such as publication history and trial success. As Shoba’s experience reflects, this creates a tension where community-focused and inclusive practices can feel secondary rather than integral, often relying on individual researchers frequently those in more junior roles to drive them forward. Reframing engagement and inclusion as core to research rather than adjuncts, could help drive more systemic change.

Navigating challenges

It’s not difficult to see why inclusive research so often falls short in practice. As Shoba points out, meaningful engagement takes time, but researchers are constrained by tight funding cycles.

Shoba and colleagues are hoping to address this and are currently advocating funders to build extra time into trial grants to allow for better refined recruitment strategies and room to course correct underrepresentation as and when it arises.

But the road to implementation is not straightforward. Without clear expectations and support from funders, researchers may be reluctant to prioritise approaches that are neither resourced nor rewarded. Yet without wider uptake, the evidence base for what works remains thin.

“It becomes a bit of a chicken-and-egg problem,” as Shoba puts it. “With progress stalling not for lack of ideas, but lack of alignment across the system.”

Creating videos, translation services and compensating people for their time all come at a cost. But even small investments can make a meaningful difference. Shoba calls to mind one PhD project she supervised to illustrate this point: “Following conversations with the community, we sought funding from the university to support research inclusion. With around £10,000, we were able to run workshops with multiple groups, produce multilingual videos and pay people for their time.”