The Wessex Secure Data Environment (SDE) has published the final report detailing the outcomes of its extensive engagement with seldom-heard groups across Wessex, carried out between July 2023 and April 2024.
This work, crucial to embedding the voices of marginalised communities within NHS data research, offers clear direction to ensure the SDE operates inclusively and effectively.
Sandra Hall, one of our Digital Critical Friends and a key participant in reviewing this work, provided a foreword highlighting the importance of engaging seldom-heard communities:
“This report reflects the dedicated, meaningful, and inclusive approach taken by the Wessex SDE programme. It is not just a summary of findings; it is, I believe, a testament to genuine listening and committed co-design. I can personally say that these insights are actively guiding the governance, design, and strategic decisions of the Wessex SDE.
“Our collective goal remains clear: to build a SDE that safeguards NHS patient data while unlocking its immense potential to save lives, improve health outcomes, reduce inequalities, and accelerate vital medical research. The findings and recommendations set out in this report will help ensure that trust, transparency, inclusion, and accountability remain at the heart of this ambitious programme.
I encourage everyone in Wessex, particularly those from diverse and underrepresented backgrounds, to get involved with the SDE – and with health research more widely. Your voice matters greatly – it is shaping how health data will serve our communities, today and in the future.”
The full engagement report, including Sandra’s foreword, is now available and will inform the ongoing development and governance of the Wessex SDE.
Read the full report: ‘Listening to Seldom-Head Groups across Wessex – June 2024’.