NHS Lothian takes patient confidentiality extremely seriously and has a well-deserved reputation for robust governance processes. We would never act to compromise patient data.
Every day, medical research and innovation is carried out by researchers across the UK using data that has been recorded during a patient’s treatment and is processed to ensure their identities are not revealed. This practice, which analyses symptoms, treatments and outcomes has allowed great strides and advances to be made in developing lifesaving treatments in many specialties, including cardiac care and also COVID-19. Without this research, breakthrough treatments and vaccines would be impossible.
DataLoch’s purpose is to enable these data-driven health and social care innovations to improve the health and lives of the region’s population. These activities are entirely in the public interest. Patient data is not being sold to private organisations, nor is it leaving the control of the NHS.
Access to extracts of data are provided to NHS service managers and medical researchers, approved by the NHS Lothian’s Caldicott Guardian and under strict controls. The data has identifying information removed and sits in a secure IT environment.
Where is the data held by DataLoch? And how is it kept secure?
DataLoch currently holds data from NHS Lothian only. All personal health data remains securely within NHS Lothian, and identifiable data is not accessible to researchers.
DataLoch builds on the existing model set up as the Lothian Regional Safe Haven. In line with data protection legislation, DataLoch has a Data Protection Impact Assessment. This is being continually reviewed and updated as any changes are made to how DataLoch operates, and as additional data partners join.
There is a robust governance model in place. Any projects applying to work with DataLoch have a full review, including members of the public, to ensure strict criteria are met.
DataLoch have a Public Reference Group, open to new members, who help to guide and inform the team’s approach and processes.
What is the DataLoch project?
DataLoch is a collaboration between NHS Lothian and The University of Edinburgh. In future, Local Authorities and NHS health boards in South East Scotland will be invited to participate and that will help generate insights and innovation in health and social care.
- bring together health and social care data for the region
- work with experts in health and social care to understand and improve this data
- provide safe access to de-identified data for academics, clinicians and innovators to help them solve the challenges that really matter.
Who can you contact if you have concerns, want further information, or wish to be involved further?
Data Concerns NHS Lothian DPO – Loth.DPO@nhslothian.scot.nhs.uk
Further information – DataLoch website: https://www.ed.ac.uk/usher/dataloch
If you are interested to join the DataLoch Public Reference Group please contact email@example.com