Improving health and social care through a secure, pioneering data service
DataLoch has now achieved a significant milestone: its full launch.
Part of the Data-Driven Innovation programme, the DataLoch service brings together key health and social care data to allow a holistic, data-driven approach to the prevention and treatment of different conditions, as well as the provision of health and social care services more broadly. DataLoch has now achieved a significant milestone: its full launch.
Researchers from beyond the South-East Scotland region can now apply for access to the health and social care data within the DataLoch repository.
From the early days of developing the service, EPCC staff have been key members of the DataLoch team, working to define the overall architecture and technology strategy, and working with data custodians and researchers to understand and prepare data for analysis. In addition, EPCC hosts and operates the secure data environment which enables safe data access by researchers.
In preparation for this launch, EPCC has worked closely with the DataLoch team to enhance the environment and define processes in support of the updated governance framework (see below). All this draws on the extensive experience EPCC has of operating the Scottish National Safe Haven, as well as safe havens for other organisations.
Key features of the DataLoch launch
Supporting research and NHS service improvement through our secure data environment. Informed by public perspectives, our updated governance framework enables approved researchers to safely and securely access health and social care data from the South-East Scotland region for novel research purposes that are in the public interest. Researchers can be from private-and third-sector organisations, as well as from academic or clinical settings. We continue to support NHS service management requests. Discover more through our How to Apply page.
The data we host. We have worked collaboratively with Data Controllers and NHS colleagues to refine and link datasets so they are research-ready. Currently we host data related to primary and secondary care, as well as from specific National Records of Scotland and Scottish Index of Multiple Deprivation datasets. Discover our current collection on our About the Data page and Connect With Us if you would like to access our Metadata Catalogue.
HDR UK Phenotypes to aid data selection. The DataLoch repository now incorporates a significant proportion of HDR UK Phenotypes. These help ease the burden on researchers who seek DataLoch-hosted data within their projects by streamlining the identification of conditions within research preparations. Discover how we have achieved this through our HDR UK Phenotypes news item.
Enhancing opportunities for cancer-related research. Through our close collaboration with Edinburgh Cancer informatics, we can link detailed cancer-specific phenotype, treatment and outcomes data to other routine health datasets. This will enable researchers to fully characterise cancer events as a specific outcome in their research protocols.
Frailty Collection: specific support for frailty-related research. Working with clinical practitioners, and available through our Metadata Catalogue, we have developed the Frailty Collection to overcome the data silos of different specialisms. The Frailty Collection integrates primary and secondary care data with the electronic Frailty Index: a validated measure that uses data from health records to provide an overall measure of patient frailty. We invite researchers to use the new Frailty Collection and actively work with us to extend its utility in new directions.
Ensuring the public value of research applications. We have collaborated with our Public Reference Group to develop a new Public Value Assessment process. Through this mechanism, applications are sent to our Public Reference Group members for a live assessment of their possible public benefits. This check ensures that projects have genuine potential for public good.
Incorporating public perspectives on data access into our governance. In the first half of 2022, DataLoch worked with Ipsos on a survey of local residents and two deliberative workshops to explore public perspectives around access to health data for research. The result was a set of principles that have informed our governance framework. Recommendations include transparent summaries of how projects would ultimately improve frontline health care, as well as specific terms and conditions for researchers to reinforce our organisational and technical security measures. News item: Survey of public perspectives of access to health data News item: Defining data access principles with local residents
The improvement of the DataLoch service continues. We are currently prioritising the development of a new registry to enhance opportunities for research related to cardiology. Discussions continue with Data Controllers to securely bring in further health and social care data within the DataLoch repository for use in research and for service management.
Also, due to launch later this year, a new innovation community driven by the Usher Institute at the University of Edinburgh will bring together partners from the public-, private- and third-sectors to develop new data-enabled solutions to address challenges such as frailty, with the support of the DataLoch team.
We are excited to enable improvements in health and social care through our secure and pioneering data service.
Stuart Dunbar, DataLoch
Steven Carlysle-Davies, EPCC