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Diverse Data

The initiative aims to reduce health inequalities and improve patient outcomes in genomic medicine for minoritised communities.

Imagery of a group of diverse people on a white background.

Equity in Health Research

We aim for the development of genomic research that is representative and benefits communities from genetically diverse ancestry

The gold standard for improving equitable outcomes from genomic research is to increase representation of those of diverse ancestry to take part in research. However, more diverse datasets do not guarantee equitable outcomes in the beneficiaries of genomic research.

As guardians of the National Genomics Research Library, we ensure that any research taking place using data we hold does not further widen any health inequities across the UK population.

Our vision is to enable change by developing solutions, tools, and recommendations for better practice to improve equity in genomic medicine and research.

About Equity in Health Research (EHR)

This major programme within the Diverse Data initiative aims to bridge conversations, turning recommendations from those of diverse ancestry and those within the wider ecosystem into practice. It also takes learnings from the Diverse Data initiative and other Equity projects within the organisation to embed more widely within Genomics England with the aim to consolidate what we know and support others to develop and deliver genomic healthcare.

By engaging with local communities of diverse ancestry on topics important for their greater inclusion in health research, alongside a wider professional stakeholder network where issues on diversity in health datasets is important, we ensure we all align so that we are better able to make change. Our ultimate goal is to support and enable others so we improve patient outcomes for those of non-European ancestry.

Why Equity?

The future of biomedical healthcare is being indicated by many as being based upon precision medicine, which uses whole genome sequencing to determine better healthcare pathways and treatments for an individual patient. The policy decision itself however, to invest in precision medicine as the future of biomedical research runs the risk of inherently creating unequal outcomes for many population groups of non-European ancestry, thus there is a need for equity over equality. The reasons for this are wide ranging and encompass both scientific and societal factors.

Better practice and solution building is enabled through more meaningful dialogues

We aim to ensure healthcare innovation does not leave behind a wide segment of the population and that we do not stand to further widen healthcare inequities.

By engaging with a wider professional stakeholder network within the ecosystem interested in this topic, and engaging with local communities on opportunity areas for change, we are able to support recommendations to turn into practice.

We aim to:

Galvanise a stakeholder network around the need for equity within this space.

Set an agenda for genomic research with patients of non-European ancestry.

Raise awareness of genomics research and some of the issues when it comes to those of genetically diverse ancestry.

Who we are working with

Explore Genomics England