A new feasibility study published in the journal PLOS ONE has shown that it is technically possible to assess the needs of young people who have lived in Gypsy and Traveller sites using routinely collected, linked data.
However, the study exposes an under-representation of these ethnic groups within health and administrative datasets which presents a major barrier to being able to accurately assess the needs of this population.
The study was led by Professors Louise Condon and Ann John, and benefitted from direct involvement from Gypsy and Traveller community members Mrs Anne Crocker and Mr Tyrone Price. It was funded by MQ Mental Health Research and supported by DATAMIND, the MRC funded HDRUK Data Hub for Mental Health.
The research team was made up of Senior Data Scientist, Sarah Rees, and Associate Professor Richard Fry from Population Data Science at Swansea University Medical School, and Professor Jason Davies from Swansea University’s School of Psychology. The research used Adolescent Mental Health Data Platform (ADP) anonymised datasets linked to health and demographic data in SAIL Databank and Welsh Gypsy and Traveller caravan counts provided by Welsh Government in partnership with Administrative Data Research (ADR) Wales. The ADP is also funded by MQ Mental Health Research.
According to the 2011 census, approximately 55,000 people in England and 3,000 in Wales (around 0.1% of the total populations of both nations) identified their ethnicity as Gypsy or Irish Traveller, however, this is thought to be a significant underestimate of the true population.
Previous studies have shown severe socio-economic inequalities and poorer physical and mental health in Gypsy and Traveller ethnic groups than in other populations.
Anonymised NHS data from Wales, housed in the ADP, was used to examine the mental health of children and young people as well as ADP-developed code lists for defining mental health conditions, and algorithms to estimate measures of incidence and prevalence. This data was linked to demographic and health (primary and secondary care) data within SAIL Databank.
Using geographic spatial analysis techniques, the team was then able to securely and anonymously link this data to Welsh Government’s biannual Welsh Gypsy and Traveller Caravan Count; a census of caravans located in both authorised sites and unauthorised sites.
The research team found limited availability of historic data from Wales. Prior to 2017, there was no distinct code for Gypsy and Traveller ethnicity in Welsh health data. Since then, the extent to which the new Gypsy and Traveller ethnicity code has been implemented in Wales is not clear and the volume of currently available data is insufficient for this type of study.
Commenting on the study’s findings, Sarah Rees, said, “Despite being a protected characteristic under the 2010 Equality Act, and being included as an ethnic group in the 2011 Census of England and Wales, national health data about Gypsy and Traveller ethnicity has until recently rarely been recorded. Whilst we found no significant differences between our cohort and the general population for rates of CMD or self-harm, this should be interpreted with caution since our cohort is likely to be only a subgroup of all Gypsies and Travellers in Wales.”
This research suggests the lack of visibility for Gypsies and Travellers in routine health and administrative datasets represents a significant barrier to recognising the need and provision of services, particularly in light of suggested changes to key sources of data used for commissioning, such as the UK census. Furthermore, it suggests that health service providers in Wales should ensure that plans to record Gypsy and Traveller ethnicity are fully implemented across all datasets to ensure underserved groups have a voice in service provision and reconfiguration.