DataLoch – the full launch and opportunities for cancer research
After two years of development, DataLoch – a data service developed in partnership by the University of Edinburgh and NHS Lothian – has fully launched. This important milestone represents the first time where researchers from any organisation and beyond the South-East Scotland region can apply for access to extracts of the health and social care data within the DataLoch repository.
Through a close partnership with the Edinburgh Cancer informatics team, there are specific benefits for cancer research. The DataLoch service can link cancer datasets with data from primary and secondary care. This linkage enables enhanced phenotyping including frailty, multi-morbidity and cancer risk factors that are essential for realistic medicine to improve outcomes, as well as being key factors for understanding the prevention and early diagnosis of cancer.
Here’s a summary of DataLoch’s key developments:
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 with research preparations. Discover how we have achieved this through our HDR UK Phenotypes news item.
Enhancing opportunities for cancer-related research
HDR UK Phenotypes implemented by DataLoch (see item above) are particularly useful for identifying cancer risk factors, as well as characterising outcomes such as long-term side-effects of treatment in survivors of cancer.
There are three main cancer-related data assets:
a) Systemic Anti-Cancer Therapy (SACT) data – a South-East Scotland regional dataset taken from the ChemoCare prescribing system. This includes chemotherapy, immunotherapy and other drug treatments for cancer.
b) Radiotherapy data – a South-East Scotland regional dataset taken from the AIRA radiotherapy planning and delivery system. Includes dosing, fractionation and related metadata and images.
c) National Cancer Quality Audit and Cancer Registration datasets – includes a number of tumour-specific datasets based on relevant data collated from across Scotland. Within each of these datasets are details such as tumour type, recurrence, treatments and staging.
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 to inform 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
Our next steps
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 service management, ultimately improving outcomes for patients and service users.
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.