News

Members of the Kent, Medway and Sussex Secure Data Environment (KMS SDE) public and patient advisory group (PPAG) attended public engagement events on Tuesday, 4 November and Monday, 15 December. The national events, hosted by the Data for Research and Development (R&D) NHS England Team, brought together public, professional and system voices and provided an opportunity for public members from across the 11 secure data environments (SDEs) to come together and discuss a range of topics across the programme. 

Key findings from the in-person event in November included: 

• there is variation on public confidence and understanding of the SDE

• wide variation on inclusivity and co-production across the SDEs, with potential need for standardisation

• engagement with communities experiencing health inequalities is important

• differences between definitions and applications of co-production and co-design. 

The online event in December provided a wash-up of the November event and included wider representation from across the SDEs. The key message from Hillary Fanning, NHS England Senior Responsible Officer (SRO), data for research and development programme, was that the patient remains at the heart of everything, with four key principles identified: 

1. delivering meaningful value to patients and communities

2. transparency in data access and governance processes

3. collaborative and inclusive approach across the SDE network

4. consistent, honest and accessible communications.

Both events were of benefit to our PPAG members in attendance.

Katherine Verrall, Chair, public and patient advisory group, said: “Such an innovative, inclusive and progressive approach to establishing a nationwide network for all those patients and members of the public involved in the world of NHS Secure Data Environments for Research.

"With the pace of change associated with this type of collaborative work, it is vital that we build strong connections that enable learning, shared best practice, and engender a sense of community amongst those of us who are heavily invested in the future success of our SDEs.

"I believe that with both sharp focus on the key principles, and on how the national network continues to be informed and supported, the ideal forum for communication and collaboration can be achieved.” 

 

Bill Speight, public member, public and patient advisory group, said: “Being part of these discussions - particularly around a network-wide patient promise or charter - felt meaningful. Hearing what matters most to public members in different areas helped me reflect on my own experiences and priorities, and reinforced the importance of working together to shape something that will have lasting value across the Network.” 

 

(Michelle Gardener, vice chair, public and patient advisory group, said: “The sessions reinforced the importance of grounding ambition in public benefit and lived experience. They also highlighted how early public deliberatives, the Data Saves Lives strategy, and the development of the SDE network have shaped a clear roadmap for what comes next. 

"A consistent theme throughout was trust. As investment grows in secure data infrastructure, so too must our commitment to meaningful, well-supported public and patient involvement. PPAG members have already helped shape principles around transparency, governance, communication, accessibility and consistency; these insights will be critical.

"From a public perspective, the message is clear: maintaining confidence depends on clarity about how data is used, how decisions are made, and how benefits flow back to communities.”