Listening and learning: Seeking insight from Gypsy, Roma and Traveller Communities on Health Data

Working in partnership with the Kent, Medway and Sussex Secure Data Environment, and NHS Sussex, Isabel Clark, Strategic Community Partnerships and Insight Lead at Health Innovation Kent Surrey Sussex, attended an outreach event with over 50 members of the Gypsy, Roma and Traveller (GRT) communities on 13th August 2025, hosted by Friends, Families and Travellers, a national charity which seeks to end racism and discrimination against Gypsy, Roma and Traveller people.

Key insights heard:

• Support for data use: People generally supported the use of health data for direct care, research, and NHS planning.
• Fears about data use: There were serious concerns about sharing personal health data:
  • Fear that private information shared with a health care practitioner could be passed to social services or the police (i.e. domestic abuse, substance abuse, criminal activity).
  • Historical experiences have made people worried that even de-identified data could be misused
  • People suggested more outreach and education to build trust.
• Confusion about “health data”: Many people didn’t fully understand what “health data” means.
• Need for reassurance about data security: People wanted clear information about how their data is protected.
• Opting out: People wanted to know how they could opt out of data sharing if they were uncomfortable.
• Transparency and control: People wanted to:
  • Understand why their data is being used.
  • Know who has accessed their data.
• Barriers to care: Gypsy, Roma and Traveller (GRT) communities face challenges using NHS services, like registering with a GP. This raised concerns about whether their health records were accurate and properly maintained. There were also questions raised about the fact most NHS services do not collect equalities data which concerns GRT members.
• Issues with direct care: Some felt that doctors didn’t look at their records before appointments, leading to repeated explanations of their health history. This resulted in some people questioning the need for data to be captured if it is not being used in direct care.
• Want to see the benefits: People wanted to hear real examples of how sharing data helps improve healthcare.

“While there was strong support for using health data to improve care and planning, people expressed deep concerns around privacy, misuse, and a lack of trust stemming from historical injustices. Meaningful involvement with Gypsy, Roma and Traveller communities is essential – not only to build trust and ensure transparency, but to understand their lived experiences and priorities. Targeted education, delivered by trusted partners like Friends, Families and Travellers, alongside improvements in the quality and accuracy of health data – including equalities information – are critical to ensuring these communities are properly represented in health planning and care delivery.” – Isabel Clark

The insight will be used to inform the delivery of the Kent, Medway and Sussex Secure Data Environment Programme.