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Embracing inclusivity in health research

Many marginalized groups harbour a historical mistrust of health institutions due in large part to systemic discrimination and events like the gross mishandling of the AIDS crisis. This mistrust manifests in avoidance of healthcare services, leading to delayed disease detection and poorer health outcomes.

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Addressing these disparities requires a seismic shift in how health institutions operate. For those working in these institutions, the solution is clear: embrace inclusivity through the following strategies.

Inclusive Study Design: From the inception of research, consider the diverse population that may be impacted. Every decision should be intentional, ensuring the inclusion of all relevant groups and perspectives.

Patient and Public Involvement (PPI): "Nothing about us without us" should guide PPI work. Diverse representation in PPI activities is essential to reduce health research inequalities and foster a collaborative relationship between health institutions and under-served communities.

Loud and Proud Reporting: Researchers should take pride in their inclusive research practices. Transparent reporting on institutional progress toward inclusivity is crucial to build trust with under-represented and under-served groups.

At The Barts CVCTU we are backing up this big talk with tangible actions. All of our studies in development will include demographic data collection as standard, with inclusive response options based on the DAISY guidelines. By standardizing this data collection across studies we are able to give participants a consistent experience, and to compare across our unit where our strengths are, and where we could improve. We will use aggregated data to uncover unintended bias so that we can address inequity and resolve issues of under-representation in our research.

The call for inclusive research practices is loud and clear. Under-served communities deserves equitable representation in health research to dismantle mistrust, improve health outcomes, and foster a future where inclusivity is the norm. It's not just a want; it's a need – and we need that change now.

For more information on the EDI work The Barts CVCTU is doing go to: Equality, Diversity and Inclusion Data.

 

 

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