At Mabadiliko CIC, we believe that meaningful involvement of communities is crucial for advancing health research and improving outcomes for all. While increasing participation of underrepresented groups in research is important, it’s time to move from mere participation to meaningful and equitable involvement as standard practice in healthcare.

The Democratic Deficit in Healthcare

For too long, decision-making power has been concentrated in the hands of professionals, policymakers, and academics—often far removed from the lived realities of those most affected by health inequalities. This concentration of power creates a democratic deficit with real consequences. When communities lack meaningful influence in healthcare decisions, we see research that fails to address their priorities, services that don’t meet their needs, and persistent health inequalities, particularly for racially minoritised communities. This isn’t just about fairness—it’s about effectiveness. Decision-making divorced from lived experience simply produces less effective results. 

The Problem with Tokenistic Engagement

Despite widespread recognition of the need for community involvement, many current approaches remain superficial and tokenistic. These efforts, while often well-intentioned, typically lack meaningful community involvement in how they are designed and implemented. Tokenistic engagement takes many forms:

• One-off consultations after research questions have already been decided
• Advisory groups with limited influence on key decisions
• Community representatives who aren’t sufficiently supported
• Box-ticking exercises designed primarily to satisfy funders
• Failure to compensate community members for their expertise

These approaches not only fail to produce meaningful insights but can actually reinforce existing power imbalances and erode trust between communities and institutions.

Transforming Power Dynamics

Democratising health research through equitable partnerships transforms how research is conducted and how health-related decisions are made. This approach moves beyond tokenistic involvement to genuine co-creation, where communities are recognised as experts in their own right. Creating meaningful partnerships requires working across multiple levels:

• Health System Capacity Building Developing institutional culture that fosters cultural humility and anti-racism within research organisations, including policy development for equitable research practices.
• Community Capacity Building Empowering communities through our Mabadiliko Academy training programmes, transforming them from passive research subjects to active collaborators with the skills to engage effectively.
• Facilitating Genuine Partnership Establishing structured, power-balanced collaborative spaces where all parties work as equals, with appropriate compensation for community expertise and clear pathways for influence.

Looking Forward: From Inclusion to Power-Sharing

True democratisation requires more than just including diverse voices in existing structures—it demands a fundamental redistribution of power. This means creating new structures and processes that enable communities to exercise meaningful influence over decisions affecting their health and wellbeing. By shifting power to those traditionally excluded from decision-making, we can create a health system that truly works for everyone—especially those experiencing the greatest health inequalities. This isn’t just about social justice; it’s about creating better health for all.