Health, trust and the importance of embedding community voice
The past few weeks have brought into focus the fragility of our health systems. From the rollout of Martha’s Rule and Jess’s Rule in the NHS to the stark findings of the Black Maternal Health Inquiry, and the misinformation being amplified across the Atlantic, one theme cuts through: too many people do not feel safe when engaging with healthcare.
On the surface, initiatives like Martha’s Rule look like progress. But behind them lies tragedy. Martha was a young girl who died despite her family repeatedly flagging her deteriorating condition. The coroner identified ingrained cultural complacency and a collapse in communication between clinicians and the family. Her mother has since called for a more equal doctor–patient relationship.
Jess’s Rule tells a similar story. Jess went to her GP multiple times with serious concerns, only to be dismissed. Her age worked against her, her cancer diagnosis came too late, and her life was cut short.
And then there is the Black Maternal Health Inquiry, which found what Black women have long known: they are more likely to die in pregnancy and childbirth, with racism playing a critical role. As a Black mother myself, I remember the difficult conversation I had with my husband while pregnant with our second child: if I cannot advocate for myself, you must do it for me. It is a conversation many Black mothers-to-be are forced to have, a survival strategy in a system that does not treat them with equal care.
These cases expose a more profound truth, our health systems are built on fragile foundations of trust. Marginalised groups routinely report feeling unseen, dismissed, or ignored, and consistently score lowest on patient satisfaction surveys. Without trust, health outcomes decline. Vaccine uptake falters. Patients delay seeking care. Frustration and suspicion replace confidence and engagement.
This erosion of trust is particularly acute in Black, Asian and ethnic minority communities. A lack of genuine co-creation means health services and research are designed time and again without considering the realities of the people most impacted. The result is predictable: systems that fail the very communities they aim to serve.
The most crucial point is that service design matters. When systems aren’t built with diverse communities in mind, they will continue to exclude and fail them. The solution is not more rules layered on top of broken foundations, but a rethinking of how healthcare is created, delivered, and evaluated.
That means community-centred approaches, which involve people directly in the design and delivery of services, recognising them as experts in their own experiences; equitable research and development (R&D) processes that move beyond incentives to redesign biomedical research so products are built for accessibility and equity from the outset; and targeted R&D investment, which generate the evidence base needed to understand and address health inequalities.
Good practice exists if we choose to learn from it. A recent collaboration between Coldr and Kantar illustrates the point. Kantar identified opportunities to embed a more inclusive approach in market research and communications, enabling them to reach a broader range of communities and deliver genuinely inclusive marketing. Coldr worked with the market research organisation to unlock the power of audiences across the UK and US by embedding inclusivity into every stage of their process.
The outcome was a set of inclusive profiling recommendations across identity, culture, religion, disability, and socioeconomic background. Just as importantly, Coldr introduced mechanisms for understanding users more deeply to create tailored experiences, ensuring transparency in data collection to build trust and safety and addressing perceptions of survey fairness to prevent certain groups from being sidelined.
This approach demonstrates what is possible when organisations face uncomfortable truths, listen to the voices they’ve been missing, and redesign their systems around inclusion.
Healthcare will not regain trust through token gestures or reactive rules. Trust must be earned by dismantling the patterns that have failed communities for decades. That means embedding co-creation, equity, and lived experience into the DNA of health systems and research processes. For policymakers, funders, and health leaders, the call to action is to move beyond rhetoric. Invest in equitable R&D. Embed community voice in every stage of service design. Hold institutions accountable not only for outcomes, but also for the inclusivity of the processes that lead to them.
Because at the end of the day, if services aren’t designed with communities in mind, they aren’t intended to serve at all.