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. Now, UPD would like to undertake a 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 envisage that this will be achieved by undertaking qualitative research namely through focus groups or interviews, followed by a write-up of the findings and recommendations.
We anticipate the project will run from the beginning of May 2024 to sometime between August to October 2024, depending on the chosen proposal.
We are conscious that this project needs a supplier that not only has the necessary research skills but that also has a trusted relationship with the range of communities that we want to engage. Therefore, we are open to receiving collaborative bids where different organisations could bring together research skills and community understanding and experience.
The deadline for submissions is 10am on Monday 25th March 2024.
More information can be found in the invitation to tender below, and if you have any further questions please contact hello@understandingpatientdata.org.uk