Patient and Public Involvement in the Eastern England SDE
The contributions of people from across the East of England and the East Midlands are essential to the development and running of the Eastern England Secure Data Environment (SDE).
The NHS patient data available through the Eastern England SDE comes from people who have been treated in participating NHS settings across the East of England and the East Midlands. The involvement of people living across our region has been and will continue to be essential to its development and function.
There will always be ways for people to get involved in the SDE and to have their say on how NHS data is used for research in the Eastern SDE.
What difference does it make?
The Eastern England SDE was formed in Winter 2025/2026 following the merger of the former East of England and East Midlands Secure Data Environments.
Teams from each former SDE worked with people from their individual regions to understand their residents’ hopes and concerns for the SDE and for the use of their patient data for research. Both teams used a range of activities to provide different ways for people to contribute – a mixture of in person workshops, focus groups, regular meetings with our Core Public Advisory Group and patient partners and digital engagement surveys.
Reports
You can read reports from key activities here to see how our findings have influenced how the SDE was built, how the Data Access Committee makes decisions about data and how we have developed our public facing information resources.
In summer 2024, we partnered with Healthwatch organisations across the East of England to hold 6 community engagement events in local communities. At these events, we discussed how to explain how the SDE works, how decisions should be made about who can access data from the East of England and the options for people to Opt Out. The findings from these events and how they have influenced the development and use of the SDE are summarised in the report below.
Our findings from Core Public Advisory Group meetings along with information from our ongoing survey and public engagement work are summarised in this report.
Our findings from Core Public Advisory Group meetings along with information from our ongoing survey and public engagement work are summarised in this report.
How can I get involved?
There are several different ways that people living in the East of England and the East Midlands can get involved in the SDE and have their say, depending on your interests and the time you have to spare.
Core Public Advisory Group (CPAG)
Members of our CPAG meet online approximately monthly. They contribute to decisions about how the SDE develops and how we should respond to the things we learn across our other public engagement activities.
Public membership of the Data Access Committee (DAC)
Public Data Access Committee members contribute to decisions about which research projects should be approved to use the SDE. Residents of the East of England and East Midlands can apply as general interest or specialist members and receive training to support their role.
Online survey
Only have a few minutes but want to have a say? Complete our public survey – questions are optional, with free text opportunities to tell us what is important to you
Join a webinar or workshop
We regularly hold online webinars and public events where you can learn more about the SDE and ask questions. Check out our events listing to find upcoming dates and times.
Invite us to speak to your community
Would your group or community like to hear more about what the SDE and health data research means for them? Get in touch and we will find a time and format that works for you.