New research reveals how to break cycle of waiting for perfect ethnicity data to act and use imperfect data already collected to drive visible change
2 December 2025 – Communities from Black, Asian and minoritised ethnic backgrounds increasingly question why they should share ethnicity data with the NHS when they don’t see it drive improvements to their healthcare, new research reveals.
Exploring Ethnicity Data Use and Gaps in Health Care, published today by the Race Equality Foundation and Joseph Rowntree Foundation, exposes a damaging cycle: advocates call for better data, some gets collected, it doesn’t get used effectively, communities lose trust, data quality declines, and the calls begin again.
The research surveyed 37 organisations and convened over 30 experts to understand what prevents ethnicity data from tackling health inequalities – and, crucially, what makes it work.
Jabeer Butt OBE, Chief Executive of the Race Equality Foundation, said:
“I’ve spent thirty years asking for better ethnicity data in the NHS. But here’s what I’ve learned: asking for more and better data doesn’t work if we’re not using what we already have.
“Communities now say: ‘Why should we share our ethnicity if nothing changes?’ They’re right to ask. Some organisations prove it’s possible to use existing data to identify inequalities and improve services today. That visible action is what rebuilds trust and improves future data quality.”
What prevents data being used
Research participants – from academic institutions and public services and the voluntary and community sector – identified critical system-wide challenges:
- Only 30% said their organisations provide mandatory training on ethnicity data collection
- 60% reported having no formal training on how to analyse ethnicity data
- 64% indicated they face barriers accessing data for analysis, even when it is collected
- Fragmented IT systems were cited as making it nearly impossible to link data across services.
- VCSE organisations – often closest to communities – described the highest barriers, including licensing costs, technical complexity, and lack of awareness and/or visibility of data disaggregated by ethnicity.
Aleks Collingwood, Partnership Insight Manager at the Joseph Rowntree Foundation, said:
“This is one of the key issues that our Insight Infrastructure programme aims to tackle – data that exists but can’t be accessed or used by those who need it most.
“We found significant infrastructure challenges, but also inspiring examples proving change is possible. The question isn’t just ‘do we have enough data?’ It’s also ‘are we using what we have?’ While we work on long-term improvements, we can act now with methodological creativity and transparency.”
“Methodological imagination” – working with imperfect data
The report introduces practical approaches researchers and analysts can apply now. To illustrate this, it features a case study of Dr Brenda Hayanga’s research on social isolation among older minoritised ethnic people. Faced with incomplete ethnicity recording and small sample sizes, she triangulated multiple data sources and was transparent about limitations. This approach revealed significant racial disparities that could inform policy – demonstrating that rigorous research is possible even when data is imperfect.
Professor Laia Bécares, Professor of Social Epidemiology at King’s College London, said:
“The analytical frameworks we use matter as much as data quality. An anti-racist approach asks ‘what systems are creating these inequalities?’ not ‘what’s different about this group?’ This isn’t just methodologically better – it’s ethically essential.”
Why VCSE organisations struggle to access data
A striking finding: voluntary, community and social enterprise organisations represented 43% of survey respondents, reflecting their central role in both collecting ethnicity data and needing to access NHS data. Yet they face the highest barriers.
Licensing costs for some UK health research datasets can exceed £15,000. For example, a single-study license for CPRD data costs at least that amount. Technical systems are complex. Many don’t know what data exists or how to request it. This means organisations closest to communities – often best placed to interpret data meaningfully – are locked out.
The report provides practical guidance on access routes, including Freedom of Information requests, partnership approaches, and free data sources.
Recommendations: from cycle to action
The report calls for coordinated change across the system:
For national bodies: Develop anti-racist data strategy; invest in systems that can talk to each other; co-produce data governance with communities; build toward 2031 Census baseline.
For NHS and local government: Use data to redesign services where inequalities exist; strengthen transparency about how data is used; invest in training analysts; communicate with communities about why their data matters.
For VCSE organisations: Build data skills; use evidence to advocate for change; demand better access to NHS data.
For researchers and funders: Fund work that uses existing data creatively; challenge the assumption that only perfect data enables action; prioritise research that benefits communities.
Timing matters
The report arrives as NHS England has published plans to improve ethnicity recording – providing evidence on how to act while those improvements take place. It also informs preparations for the 2031 Census, which currently include a redesign of the existing ethnicity question.
Most urgently, it challenges all sectors: we can’t afford six more years of calling for better data while taking no action with what exists. Communities need to see their data matters – now.
ENDS
Notes to Editors
About the research
Exploring Ethnicity Data Use and Gaps in Health Care drew on a survey of 37 respondents (43% VCSE, 27% academic, 27% public sector), two roundtables with over 30 experts, case studies, and a series of blogs.
Download report: raceequalityfoundation.org.uk/understanding-ethnicity-data-gaps/
Key findings
Of the research participants:
- 30% said their organisations provide mandatory training on ethnicity data collection; 60% reported having no training on analysis.
- 64% face barriers accessing ethnicity data.
- Survey respondents cited the following reasons for public resistance to sharing personal data: privacy concerns (58%), not identifying with available categories (53%), and unclear purpose or mistrust (26%).
About Race Equality Foundation
The Race Equality Foundation is an evidence-based, policy and practice charity dedicated to promoting racial equality, ending systemic racism and positively transforming the lives of Black, Asian and ethnically minoritised communities in the UK. Visit: raceequalityfoundation.org.uk
About Joseph Rowntree Foundation
We are an independent social change organisation, working to support and speed up the transition to a more equitable and just future, free from poverty, where people and the planet can flourish. Visit: www.jrf.org.uk
Contact
Lauren Golding, Communications & Public Affairs Manager, Race Equality Foundation
comms@racefound.org.uk
Interviews available on request with Jabeer Butt OBE, Race Equality Foundation
