The National Safe Haven for research using unconsented NHS data
Posted: 21 Nov 2017 | 16:10
NHS Scotland allows research using routinely collected, unconsented patient data. Additionally, these data can be linked to social data such as education. The research this enables can have an enormous public benefit but the use of these data must be managed very carefully to safeguard privacy and maintain public trust and support.
EPCC is responsible for building, supporting and hosting the infrastructure of the National Safe Haven, and we continue to develop the infrastructure and software to further enhance the service.
Accessing the data
To use these data, researchers must apply to the Public Benefit and Privacy Panel specifying the data that is required and the purpose of the research. If granted permission, the data will be selected, anonymised and linked (a process called pseudo-anonymisation) before being placed within the National Services Scotland (NSS) National Safe Haven. Researchers must process their data from within this National Safe Haven infrastructure.
To access the National Safe Haven, researchers must use remote desktop software and log in using a high-security protocol. Researchers are then able to use the remote desktop session to access, process and analyse the data they have requested. The remote computer is installed with several statistics packages that the researcher can use. Crucially, the remote computer offers no access to the Internet neither to receive nor send data. Researchers can request files to be transferred into, or out of, the Safe Haven but such requests are subject to a manual verification process to ensure privacy is never breached.
This approach to providing the National Safe Haven has proven very successful and has supported more than 200 research projects over the two years it has been running. EPCC is responsible for building, supporting and hosting the infrastructure and continues to develop the infrastructure and software to further enhance the service.
We are currently working with the Health Informatics Centre at the University of Dundee to provide researchers with access to the Scottish NHS imaging data (X-ray, CT, MRI, ultrasound etc) dating from 2010 onwards. Such data offers tremendous opportunities for a wide variety of research including examining early/preclinical diagnosis, disease progression, personalised medicine, genotype-phenotype associations, and the development of novel computer vision and machine learning algorithms. Additionally, the ability to link this image data with patient outcome data is unique to Scotland and offers even greater potential for world leading research that will have a major contribution to the future health of the nation.
Providing imaging data to researchers to support their research goals is technically challenging, and we are excited to be involved in the delivery of a solution that offers the potential of huge health benefits in the future.
Ally Hume, EPCC