From Data to Action: Advancing Health Equity in Kidney Disease

Reflections from the Kidney Research UK Data Science and Health Equity Programmes

On 23 June 2026, the Kidney Research UK Data Science Programme and Health Equity Programme brought together researchers, clinicians, data scientists, charity partners, and people with lived experience to explore how data science can help tackle health inequalities in kidney disease.

Through presentations, a panel discussion and collaborative sandpit sessions, one message emerged consistently: health inequities are not simply a data problem—they are a systems problem. While advances in data science offer exciting opportunities, meaningful progress depends on combining technical innovation with lived experience, community engagement, and action across healthcare systems.

Lived experience as expertise

A highlight of the day was hearing from patient representatives Abigail Green and Fez Awan, whose perspectives grounded discussions in the realities of living with kidney disease.

Abigail shared her experience of delayed diagnosis and fragmented care, reflecting on how her journey was shaped not only by clinical factors but also by her experiences as a Black woman navigating the healthcare system. Her story reminded participants that while data can reveal patterns of inequality, it cannot fully capture the experiences and barriers that create them.

Fez spoke about the importance of involving patients and the public throughout the research process—not simply as consultees, but as partners in shaping research questions, interpreting findings, and ensuring that research delivers meaningful impact. These themes echoed discussions throughout the day, reinforcing that lived experience should be recognised as a form of expertise alongside clinical, research and data science knowledge.

From data quality to data justice

The workshop also explored the limitations of relying on data alone to address health inequalities.

As panellist Dr Gavin Dreyer observed:

"If you put rubbish data in, you don't just get rubbish data out. You get injustice."

This reflected a wider discussion about how incomplete or biased datasets can reinforce existing inequities. Participants heard how underserved communities are often underrepresented in routinely collected healthcare data and research studies, meaning those at greatest risk of kidney disease can be the least visible in the evidence used to inform policy and practice.

Speakers also highlighted the importance of improving representation in research. Examples such as the Genes & Health programme demonstrated that building inclusive datasets requires long-term trust and meaningful engagement with communities—not simply recruiting more participants.

Alongside better data, discussions repeatedly emphasised the influence of wider social determinants of health, including deprivation, housing, access to healthcare, and geography. These factors shape both the risk of developing kidney disease and the care people receive, reinforcing the need for data science approaches that consider the broader context in which health inequalities arise.

Turning insight into action

The afternoon sandpit sessions focused on how these ideas could be translated into future research.

Participants identified opportunities to improve early identification of people at risk, develop fairer predictive models, better integrate real-world data, and strengthen partnerships between researchers, clinicians, communities and people with lived experience.

Perhaps the strongest message from the day was that addressing health inequalities is not the responsibility of any one discipline. It requires collaboration across data science, clinical practice, policy, and communities themselves.

As the Kidney Research UK Data Science and AI funding call opens, the workshop has laid the foundations for new interdisciplinary collaborations. The challenge now is to build on the momentum from the day and turn shared ideas into research that delivers meaningful improvements in kidney health equity.

Get involved in the DSxHE Kidney Health Theme

The conversations from the workshop are just the beginning. If you're interested in applying data science to improve kidney health equity, we'd love you to get involved in the DSxHE Kidney Health Theme.

Whether you're a researcher, clinician, data scientist, policymaker, or someone with lived experience, the theme provides opportunities to connect, collaborate, and help shape future activities and research.

Interested? Get in touch—we'd love to hear from you: info@datascienceforhealthequity.com