Working with Friends, Families and Travellers to co-produce “Gypsy, Roma & Travellers: Attitudes to Healthcare Data for Planning & Research” has been a privilege. The work explores how healthcare data is perceived and, more importantly, how we can build trust with communities which are often overlooked. The report is a testament to the fact that building trust isn’t just about data security; it’s about respectful human interaction, acknowledging history, and empowering individuals with clear information and genuine choice. The findings will help the design of the Thames Valley and Surrey Secure Data Environment.
Read the report and watch a short animation based on what people told us.
What we found
Our approach was deeply rooted in listening: through online chats, in-person events, and a steering group that guided the project from start to finish. This collaborative method allowed us to uncover four key findings that are essential for anyone working in healthcare or community engagement:
- Understanding diversity: Gypsy, Roma and Traveller communities are not all the same, and understanding their unique ways of living, languages, and specific challenges (including for men discussing health) is critical.
- Addressing historical (and current) mistrust is non-negotiable: We cannot talk about using health information without acknowledging the historical and ongoing discrimination these communities have faced. Past negative experiences, including misuse of data, profoundly impact their willingness to trust the NHS.
- Accurate recording and safety to self-identify: A significant issue is the lack of appropriate options on NHS forms for people to accurately identify their background, coupled with a fear of negative repercussions if they do self-identify. This directly impacts data accuracy and the ability to plan effective services.
- Transparency and choice are paramount for data sharing: People want clear answers: what data is collected, what is it used for, who sees it, what protections are in place, and importantly, whether they have a choice. Explaining how data can improve services for their communities builds willingness to share.
What does this mean?
For healthcare professionals, it’s a call to foster respectful interactions, understand cultural nuances, and provide clear, accessible information. For the general public, it’s an invitation to appreciate the complex history and unique challenges faced by Gypsy, Roma and Traveller communities. And for those in engagement roles, it underscores the power of co-production and genuine partnership.
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