Engaging Communities: Insights from Healthwatch led community workshops for Secure Data
Insight Report- Secure Data
Six regional Healthwatch events took place in June, July and August 2024. They were held in Bedford, Colchester, Hertfordshire, Peterborough and Norfolk.
The six Healthwatch events were attended by attended by a diverse audience of residents from across the East of England, which included members of the public and a few people with a research background (Norfolk events). These workshops have provided valuable insights into the perceptions and concerns of both researchers and the public regarding data use in healthcare.
These events showed that in general the public are supportive of research using de-personalised NHS data. Attendees' understanding of health data and research varied based on their backgrounds. Those with learning disabilities found the SDE concept complex to understand highlighting the need for clearer communication and inclusivity in presenting the SDE to audiences.
Read the full report below.
Group members wanted for East of England Secure Data Environment Core Public Advisory Group
Are you interested in how patient data is used for research in the East of England? The East of England Secure Data Environment (SDE) is a digital platform that allows approved researchers to securely access de-personalised patient data for health research. It has been built in partnership with NHS organisations across the East of England, with state-of-the-art cyber security measures, controlled access and robust oversight of data usage. We’ve been working with a small group of people from across the East of England who meet with the SDE team about every 2 months to provide a public perspective on the project and to advise on its development.
This group is called our ‘Core Public Advisory Group’ and we are welcoming applications for new members. You can read more about the role, including information about payments.
Interested in applying?
cuh.eoe.sde@nhs.net for more information.
We're now very much in the 'awareness raising' phase of the SDE - if you or colleagues would ever like us to come and talk about the SDE to your team, patient or other groups, please let us know, and we'll happily come along to answer any questions.
