Addressing public health and social care challenges is of increasing importance in society today. The role of data in understanding population-wide health and wellbeing, and consequently opening the door to service improvements and new innovation that will enhance care, is core to the mission of the Data-Driven Innovation Health and Social Care programme, part of the Edinburgh and South East Scotland City Region Deal.
The full launch of DataLoch represents the first time where researchers from beyond the South-East Scotland region can apply for access to the health and social care data hosted within the DataLoch repository.
Supporting research and NHS service improvement through a secure data environment
Informed by public perspectives, DataLoch’s 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. The service will continue to support NHS service management requests.
Discover more through the How to Apply page
The data that's hosted
The DataLoch team has worked collaboratively with Data Controllers and NHS colleagues to refine and link datasets so they are research-ready. The DataLoch repository hosts data related to primary and secondary care, as well as from specific National Records of Scotland and Scottish Index of Multiple Deprivation datasets. Discover the current collection on the About the Data page and Connect with Us if you would like to access the 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 they have achieved this through the HDR UK Phenotypes news item.
Through close collaboration with Edinburgh Cancer informatics, DataLoch 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.
Working with clinical practitioners, and available through DataLoch’s Metadata Catalogue, researchers 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. Researchers are invited to use the new Frailty Collection and actively work with the team to extend its utility in new directions.
Ensuring the public value of research applications
DataLoch staff have collaborated with their Public Reference Group to develop a new Public Value Assessment process. Through this mechanism, applications are sent to the 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. Find out more about these projects:
Survey of public perspectives of access to health data
Defining data access principles with local residents
The improvement of the DataLoch service continues. The next priority is to develop 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.