At Mabadiliko CIC, we believe transformative change happens when lived experience guides institutional practice through equitable partnerships. For too long, health research and service delivery have been designed by those who may never have experienced the challenges faced by racially minoritised and marginalised communities.

The Knowledge Gap: The Foundation of Health Inequity

Traditional approaches to healthcare research often create a critical disconnect. When research is conducted “into us, by others” without meaningful community involvement, the results can be both ineffective and harmful. The insights gained rarely capture the nuanced realities of people’s lives, leading to interventions that fail to address root causes of health inequalities. Despite growing awareness of health inequalities, current systems continue to fail the very communities experiencing the greatest barriers to healthcare due to:

• Cultural and attitudinal barriers in research approaches
• Power imbalances that hinder true co-production of knowledge
• Institutional inertia that reinforces traditional hierarchies
• Short-term funding models that undermine sustainable relationships

Lived Experience as Expertise: The Foundation for Transformation

When we position communities as co-creators rather than subjects, we recognise that lived experience is a form of expertise essential to achieving equity. People who have navigated healthcare systems while facing barriers of racism, discrimination, or cultural misunderstandings bring invaluable insights that cannot be gained through observation alone. Lived experience offers contextual understanding that statistical data cannot capture, insights into barriers that might otherwise remain invisible, practical solutions grounded in real-world needs, cultural nuances that enhance intervention effectiveness, and accountability to ensure research benefits those it claims to serve. This approach requires a paradigm shift in how we understand expertise and create knowledge. By moving from extraction to co-creation, we produce research that is both scientifically rigorous and culturally relevant—essential for creating lasting change.

The Vital Role of VCSOs as Bridge-Builders

Communities consistently identify trusted Voluntary and Community Sector Organisations (VCSOs) as essential intermediaries. These organisations have earned trust through long-term presence, shared lived experiences, and proven track records of community advocacy. When positioned as equal partners rather than mere service providers, VCSOs offer unique capabilities to connect healthcare institutions with communities and can play a crucial role in bridging the gap between healthcare institutions and communities. Their unique position allows them to:

• Be active co-creators in every step of the research lifecycle
• Leverage trust advantages built through long-term community presence
• Translate across difference, helping institutions understand community contexts
• Create sustainable ‘networks of networks’ connecting multiple stakeholders
• Build capacity in both communities and institutions for meaningful engagement
• Advocate for systemic change while providing practical community support

From Individual Projects to Systemic Change: The Case for a New Approach

This work involves transforming the entire health ecosystem. We understand that embracing new approaches can feel challenging, especially when they require rethinking established methods and reconsidering what constitutes expertise. These feelings are natural—change, even positive change, often involves discomfort. For researchers and institutions who have dedicated careers to improving health outcomes through traditional methods, shifting toward more equitable approaches may initially feel like criticism. It is not. Rather, it represents an evolution in our collective understanding of how knowledge is created and how health equity can be achieved. When equitable partnerships become the norm, benefits ripple outward:

• For researchers and institutions: Enhanced methodologies, improved data quality, more nuanced interpretation, and opportunities to pioneer innovative approaches in health equity research.
• For healthcare professionals: More effective services, improved resource allocation, enhanced public trust, and greater professional satisfaction from truly person-centred care.
• For communities: Empowerment through recognition of experiential knowledge, skills development, and improved health outcomes through more relevant interventions.
• For funders: Enhanced value for money, better advancement of equity goals, and stronger evidence base for future investments.

This transformation doesn’t require abandoning established research principles. Rather, it involves integrating community wisdom with academic rigour, creating a richer approach that enhances scientific quality. The journey can begin with small steps—a pilot project with meaningful community involvement, a partnership with a local VCSO, or investing in cultural humility within your team. By approaching this transformation with openness and commitment to learning, institutions can navigate the discomfort while discovering the profound benefits of more inclusive, collaborative work. The goal isn’t replacing one form of expertise with another, but creating space for multiple forms of knowledge to enhance each other, producing better outcomes for everyone.