We helped make information about NHS research more accessible to those with learning disabilities
We joined a network of local Healthwatch to find out what people thought about recent changes to NHS research, which mean that approved researchers can securely access de-personalised digital patient data.
The East of England Secure Data Environment (SDE) allows researchers to use digital patient data for health research and has been developed in partnership with NHS organisations across the East of England, with state-of-the-art cyber security measures, controlled access and strict management of data usage.
East of England Healthwatch Community Engagement Workshops were held to discuss the use of NHS data for future research and issues associated with accessing this information. Concerns raised included privacy, security and misuse, priorities for health research and the ability to opt-out.
Research helps prevent, predict, diagnose and treat health conditions. The East of England SDE aims to make research using NHS data safer and easier.
What did we do?
Our role focussed specifically on engaging with people with learning disabilities to find out what they understood about the scheme and health research in general. We also found out what information they would like, or required, to ensure their accessibility needs were being met.
Those with learning disabilities found the SDE concept difficult to understand and emphasised the need for clear, accessible communications when explaining the scheme. Some struggled to understand how the information would be held digitally, and not in a secure filing cabinet, for example.
The workshops we were involved with provided valuable insights into the perceptions and concerns of both researchers and the public regarding data use in healthcare.
The sessions demonstrated clear, but cautious interest in using data to enhance healthcare and showed that concerns around privacy, security, and inclusion need to be addressed.
As a result, information in easy-read format is being developed to help meet the needs of those with learning disabilities.
“The findings from the discussions we had as part of this workshop have shaped our understanding of the work we need to do with people with learning disabilities and their carers, as well as feeding into adjustments we’ve made to the text of our 'standard' leaflets. It was extremely helpful to understand what examples worked and people’s concerns and expectations about data use.”
- Dr Amanda Stranks, PPIE Workstream Lead for East of England Secure Data Environment
What happens next?
The East of England SDE protects the privacy, security and integrity of NHS patient data during research use by:
- Anonymisation – all directly identifying information is removed from the data before researchers use it
- High-level security testing and management
- Contractual controls – researcher organisations agree to legally-binding terms and conditions to use data and can only access specific data required for their approved research
Every researcher who would like to access patient data using the SDE will need to make an application that states who they are, what they are researching and what data they need. All applications, whether they are from NHS, university, charity or commercial researchers, will be assessed against the same criteria for safety, security and public interest.
If you consent to your de-personalised NHS data to be used for approved research through the East of England SDE, you do not need to take any action. You can read more information about using your research data here.
If you do not want to have your NHS data used for research through the East of England SDE you can opt out here or by calling 01223 348 490.
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