The views and involvement of patients and the wider public will be vital to the development of the Wessex Secure Data Environment (SDE). We will be speaking to people across Wessex about the project, to make sure that everything from data access to our research priorities are in line with local expectations.
An early initiative has been to prioritise hearing from groups of people who are often less heard or visible in ‘public and patient involvement and engagement’ (PPIE).
Working with existing community organisations, charities and faith groups, we have visited and met with over 500 people in 30 grassroots groups representing ‘seldom-heard’ communities across Hampshire, the Isle of Wight and Dorset.
The ‘seldom heard’ groups we have spoken to include carers, people living with long-term and/or complex conditions, people with a history of substance abuse, people in economic disadvantage, settled travellers, veterans, disabled people, older people and young people.
We are currently compiling a report that will capture the key themes from these conversations – what people and communities from these groups thought about the idea of the SDE. These conversations will help us develop recommendations and principles for how we shape our PPIE work, communications and project roll-out activities in the future.
A summary of the report will be shared directly with the groups we’ve spoken to. This will also be made available to all, along with a link to the full report, published on our website in due course.
To find out more about how you can help shape the development of the SDE in the future, please visit our Get involved page.