Last week 25 members of the public from across the region worked together to develop recommendations that will directly inform secure data environment decision-makers. Check out what our Citizens Jurors discussed over the week.
We have officially launched our Citizens’ Jury with a set of online sessions. Our Jurors heard from Director Phil Waywell on why at Yorkshire & Humber SDE we decided to host this Citizens’ Jury and why is it important for us to hear from the public. The next online sessions were dedicated to expand our members of public knowledge through expert presentations focused on healthcare data for research:
- A presentation by Dr Kieran Baker, our Sheffield NHS Representative, where he explained what are patient records and how are they used in research.
- Key insights from our Associate Director, Professor Vishal Sharma (PhD), explaining Yorkshire & Humber Secure Data Environment.
After online sessions our Citizens’ Jury took place in person in Thirsk. On the first in person day we kicked off with insightful presentation from Peter Singleton, Director of Cambridge Health Informatics Limited, about the rules for using and protecting patient data in law and guidance. Peter provided valuable insights into the legal frameworks governing patient data, explaining how regulations like GDPR and other healthcare-specific legislation create safeguards around sensitive information.
Our another expert session featured John Birkinshaw, Data Lead, talking on how we protect patient data within our secure data environmant. John provided key insights into the policies, tools and best practices in place to ensure patient data is handled securely and responsibly.
Another in-person day Jurors started with an insightful expert session from Emma Lagerstedt, Policy and Engagement Manager at Understanding Patient Data. Emma explored the question: “What challenges to Y&H SDE can be made?”, sparking important discussions from our Jurors to challenge the Secure Data Environment. Following the presentation, the Jurors were working in groups to share their thoughts on both benefits and concerns of Yorkshire & Humber SDE.
The last block of experts’ presentations were focused on the Northern SDEs Partnership, called PANORAMA project. Our Director Phil Waywell presented the Partnership’s goals, explaining how it works and the potential benefits it offers to our region. Following Phil’s presentation, our Associate Director Kate O’Sullivan talked about the strategic rationale behind our decision to join this Partnership and highlight the extensive benefits it will deliver beyond the Yorkshire and Humber SDE framework. At the end, our Jurors welcomed back Emma Lagerstedt from Understanding Patient Data as she, together with the Jurors, discussed what are the challenges to Northern SDE Partnership beyond Y&H SDE.
On our final day of Citizens’ Jury, Associate Director Vishal Sharma (PhD) guided the Jurors on how researchers work within the NHS and addressed the questions our Jurors had raised during previous sessions, making the research process clearer for everyone.
A huge “Thank You” to everyone who made this Citizens’ Jury possible! To our experts for their time and insightful presentations, our Jurors for their brilliant engagement and active participation, and our team for all their hard work behind the scene.
Signed up for our newsletter — we’ll be sharing all the findings in our report very soon!