Building inclusive research and co-design in digital health

In March 2026, inclusive research consultant Muhammed Rauf worked with King’s College London co-design researchers Dr Emelia Delaney and Dr Lili Golmohammadi (King’s Health Partners Digital Health Hub) to produce the workshop ‘Inclusive research and co-design in digital health’. In this guest blog post, Muhammed expands on some of the ideas explored in the session. 

Please can you introduce yourself and your role?

I am Muhammed Rauf, Founder of Elysium London. We are an inclusive research consultancy working to close the gap between policy and practice in inclusive research, partnering with universities, NHS bodies, and funders to change how communities shape health research and innovation that affects them.

What is digital inclusion and equity?

Digital inclusion is well defined in the sector. The NHS Inclusive Digital Healthcare Framework sets out five clear domains, and most teams working in this space will be familiar with them.

Digital equity is more contested. The term is widely used, but there is no shared operational definition. When I ask teams what equity means in how they work, the answers diverge: around who should be involved, at which stages of the project, and how they influence decisions. The sector is using the language of equity without a common understanding of what it requires in practice.

But digital equity requires more than inclusion at the project level. It requires us to address the conditions under which communities are expected to participate. Who is funded and why, how decisions about inclusion are made, and whether the infrastructure exists for communities to contribute on equal terms. Without addressing those conditions, equity remains a principle applied to unequal starting points.

What are the barriers to building trust in digital health?

The NHS is moving into digital transformation at pace. The UK government is committing £680 million to scaling health data and AI programmes. Yet only 49% of the public say they would use the proposed AI features in NHS services, and ethnic minority communities report significantly lower trust in health data systems. The investment is outpacing the relational groundwork needed to make it legitimate.

Over five years of working at the intersection of communities, universities, NHS bodies and funders, I have seen these barriers widen the gap between policy and practice. In a recent white paper I published titled The Inclusive Research Collaborative, I mapped the four structural patterns that sustain this gap:

• System processes that undermine inclusion: Funding, procurement, and risk management practices that prioritise institutional fluency over contextual legitimacy, constraining community-led approaches before they begin.
• Absence of stewardship and the dissolution of learning: Responsibility for inclusion dispersed across teams with limited mandate and high turnover, resulting in collapsed relationships and lost learning.
• Incoherence in standards, quality, and practice: No shared benchmarks to distinguish robust inclusive work from weak or extractive approaches.
• Tokenistic inclusion and the professionalisation of PPIE: Involvement that is symbolic rather than substantive, with structures that elevate recurring participants while those most affected by inequality remain peripheral.

These patterns have real consequences. During the COVID-19 pandemic, I was conducting research into medical scepticism in Black and ethnic minority communities across south London. Across 120 interviews, we heard harrowing accounts of racism and discrimination in the NHS and in health research. To date, it remains one of the most difficult projects I have worked on. Yet the themes from that project have surfaced in every study I have conducted since; across vaccine mandates, mental health, clinical trials, vital 5, air pollution, and cost of living.

Building trust takes time. Sustaining it takes commitment. We are not there yet.

Why is inclusive co-design in digital health so important?

Across the UK, billions will be invested in the digital transformation of healthcare. We already have the evidence on what creates inequality. It shows that for research and interventions to succeed; they must be designed by and with the communities they are intended to serve. This period of innovation will either close the gap or reinforce it.

So, there is not a question of what we do, it's how we do it.

Where can readers find out more?

The workshop I delivered for the KHP Digital Health Hub earlier this year explored these themes in practice. You can watch a recording of the session on the KHP Digital Health Hub’s Methods Library.

For more on how we approach this work at Elysium London, visit elysium.london. We are building the infrastructure and capability to close the gap between what the sector commits to in policy and what it delivers in practice.