We commissioned researchers at University of Worcester to undertake a desk review and community engagement research to explore the attitudes of Gypsy, Roma & Traveller communities toward collection and use of their ethnicity data in health services, and to develop recommendations for how we can do this better.
Background
The Gypsy, Roma and Traveller communities are known to face some of the most severe health inequalities in the UK, likely due to the compounding and exacerbating effects of other inequalities they face in relation to accommodation, employment, and policing. The Covid-19 pandemic drew much needed attention to existing health inequalities faced by these communities; yet even then poor collection and quality of ethnicity data by healthcare services concealed the extent of the impact on the health of these communities.
The need to better capture data on these communities is generally beginning to be better recognised, such as ‘Roma’ being added as a recognised ethnicity category on the 2021 census following the addition of ‘Gypsy or Traveller’ in 2011. However, a 2023 ONS report showed that, when linking ethnicity data recorded by different NHS data sources in England, the Traveller ethnic group consistently showed the lowest levels of agreement. This is likely because NHS hospital data sets in England continue to rely on 2001 census categories, forcing people in these communities to opt for inaccurate categories such as ‘Other White’ or ‘Any Other Ethnic Group’, which subsequently also show poor agreement across sources. Conversely, according to the most recent evidence we’re aware of, NHS Wales include a category for ‘Gypsy or Irish Traveller’, NHS Scotland include categories for ‘Gypsy/Traveller’, ‘Roma’, and ‘Showman/Showwoman’, and Northern Ireland Health and Social Care include categories for ‘Irish Traveller” and “Roma Traveller”.
However, resolving administrative issues does not resolve other reasons for data inaccuracy and incompleteness for these communities, namely social exclusion and barriers in access to health and care services. These barriers can include:
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mistrust in declaring ethnicity due to longstanding discrimination and lack of cultural awareness from services or the system
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differences in language and communication needs
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digital exclusion and unreliability of internet access
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nomadic lifestyles that don’t fit with expectations of registered addresses and practices
Therefore, even where the option to self-identify as Gypsy, Roma or Traveller is available, people may not want to due to a lack of trust in the intention behind this data collection and fear of discrimination. These factors - and how to address them - should be meaningfully explored through public engagement with people from these communities, led by people with strong connections with them.
UPD advocates for the voices of seldom heard communities. In 2021, UPD commissioned a project focusing specifically on Black and South Asian communities’ experiences and perceptions of health data collection due to the disproportionate impact of the pandemic on their health. UPD sought to commission a similar public engagement project to understand the attitudes and perspectives of Gypsy, Roma and Traveller communities on the collection of ethnicity data in health services, and develop recommendations to ensure these groups are better represented in healthcare data. We commissioned researchers at University of Worcester to support us with this project.
Part 1 - Desk Review
Given the lack of health data around Gypsy, Roma, and Traveller communities and both dated and ineffective ethnic categorisations across health services in the UK, we conducted a scoping review that focused on identifying existing relevant sources that centred on ethnic categorisation and associated factors. Scoping reviews enable researchers to examine central issues surrounding a research area and discover key sources and types of evidence available (Tricco et al., 2018), without being restricted by a
potentially narrow range of quality-defined studies and by different methodological approaches used. In accordance with scoping review recommendations (Peters et al., 2015), we used broad research questions combined with clear definitions of the concepts relevant to the study’s scope. We established three main questions to inform the review, which are as follows:
1. What research has been conducted that has examined the importance of ethnic categorisation in demographic data?
2.What are the main approaches to determining ethnic categories?
3. What research has specifically focused on the ethnic categorisations of Gypsy, Roma, and Traveller populations?
Read the full desk review here
Part 2: Community engagement
Given the limited ethnicity data from people of Gypsy, Roma, and Traveller background, this project focused on advancing current knowledge around the barriers that communities regularly face in relation to health and ethnic identity recording. Through direct engagement and co-production, this study generated new insights and thinking around how to meaningfully involve Gypsies, Roma, and Travellers in co-producing ethnic identity-based categories for healthcare services. The aim of the study was to explore community members’ perspectives on ethnic categories, ethnic data collection and management in the UK health services to improve active engagement with health services.
Research methods were underpinned by the principles of co-production, whereby researchers and community members work in authentic partnership from the outset through to dissemination. We also established an Advisory Group at the outset of the project and regularly consulted its members regarding the progress of the project. Methods included a survey to identify general issues with current ethnic categories in use and best practice recommendations, as well as focus group discussions to explore these ideas, concepts and recommendations in more depth with participants across England, Wales, Scotland and Northern Ireland.
Read the full report here
Additional outputs & future plans
We have produced a video summarizing the project's background, key findings and recommendations:
We also published an article about the project in Travellers' Times - a Gypsy, Roma and Traveller focused media outlet:
To take this project forward, the University of Worcester researchers will be contributing a poster on the project to the UK Health Security Agency conference in 2025 due to its focus on health inequalities. They are also exploring options for publishing the reports in an academic journal.
We will be working with policy and decision-making organisations to use these findings to inform and drive changes to how we collect ethnicity data, both from an administrative but also interpersonal perspective. We will also be exploring opportunities for co-creating community-facing resources that explain the importance of accurate ethnicity data for improving health and care not just for individuals but for the wider community.
If you have an idea for how we might want to consider taking this project forward, get in touch at hello@understandingpatientdata.org.uk