Welcome to the  DSxHE's Download; our monthly informal, conversational and informative online Meetups!

These are open to anyone in the world, no matter what your level of experience and background. They are really just an opportunity to meet fellow DSxHE-ers and learn a few new things :-)

We are delighted to be joined by Kene Esom, Research Fellow at Bright, leading a discussion on - Before the Dataset: Who Gets Counted in Health Data, on Whose Terms, and at What Cost?

Session description: 

Health-data inequality is often addressed only after the data exist: who is represented, who is missing, and whether datasets and models reproduce existing inequalities. But what happens before someone becomes a data point?

Drawing on his PhD research on Kenya’s national digital identity system and healthcare access among queer and other marginalised populations, Kene Esom will explore how stigma, prejudice, criminalisation, class and institutional trust can shape whether people seek care, what they disclose, and how they become visible to health systems.

Bringing this research into conversation with recent UK debates about digital identity and NHS digital access, Kene will introduce the idea of a double bind of visibility: people can be disadvantaged because they are absent from health data, while the conditions under which they are asked to become visible may themselves produce risk, avoidance or selective disclosure.

The session asks what this means for data diversity, missingness and AI in health, and why understanding health equity may require us to look before the dataset.

Speaker bio: 

Kene Esom is a Research Fellow at the University of Birmingham, working within Bright on the evaluation and regulation of AI-enabled health technologies. He is also completing a PhD in Law at the University of Warwick.

His doctoral research examines Kenya’s national digital identity infrastructure and its implications for social inclusion and access to healthcare of marginalised populations. His wider research sits at the intersection of law, health and emerging technologies, examining how institutional and regulatory arrangements shape access, inequality and accountability.

Before entering academia, Kene spent more than a decade working in human rights, global health and international development, including with UNDP. His work brings socio-legal and decolonial perspectives into contemporary debates about digital governance, AI and health equity.

Email us at info@datasceinceforhealthequity.com if you want to host next time & share your work or anything interesting that you've encountered lately. Or, if you're looking for some inspiration on what to share, why not have a look at the DSxHE Library?

See you there!