ADRUK is an Economic and Social Research Council (ESRC) funded project (July 2018 – July 2021), set up to create the infrastructure necessary to support the UK in becoming a world leader in data management. It is a partnership of ADR Scotland, ADR Wales, ADR Northern Ireland and the Office for National Statistics (ONS). The partnership aims to link together administrative data held by different parts of government and facilitate safe access to that data for accredited researchers, in order to create a knowledge base about how our society and economy function. The partners work closely with their respective governments in order to understand more about what decision makers need to know and create data sets that can help to answer important policy questions.
eDRIS are part of ISD Scotland and provides a single point of contact for researchers wishing to work with linked health and other administrative datasets. They help researchers with study design, approvals and data access in a safe computing setting. The ISD website link above provides a list of FAQs about eDRIS. eDRIS charges for its research co-ordination services but not for the quick pre-submission review of NHS Scotland Public Benefit Privacy Panel Application forms. Studies are assigned a project coordinator who can provide more information about available and relevant data, help draft and coordinate applications for data ethics and approvals, and negotiate with other data controllers on your behalf. eDRIS staff members also play a role in extracting data from NHS ISD holdings and in the statistical disclosure control of project output. Note that due to demand, eDRIS often places projects in a queue, particularly during indexing of cohorts and extraction of data.
NRS are one of the major data controllers in Scotland, being responsible for a variety of non-health administrative data. This includes national Birth records, Death records, Marriage records, Scottish Census records, and other vital event records. NRS also perform indexing for any project involving non-health data, and adopt the role of the Trusted Third Party in many linkage studies. NRS also require their own version of the PBPP process, with a separate application form. eDRIS can help researchers completing applications.
NHS ISD is part of NHS National Services Scotland. It provides “health information, health intelligence, statistical services and advice that supports quality improvement in health and care and facilitates robust planning and decision making”. On behalf of NHS Scotland, ISD manages national databases which contain information collected by NHS staff about the care and treatment given to individuals in Scotland. They work in partnership with several organisations across the care system including NHS Scotland Unified Boards, hospitals, general practitioners, local authorities, voluntary organisations and Community Health Partnerships.
If you are working with secondary health data, sometimes you will need approval from one of the 11 Scottish Research Ethics Committees (RECs) for your research. Applications are made using the Integrated Research Application Service (IRAS) and are sent for review by a regional panel (from anywhere in the UK) consisting of both lay and professional members. It isn’t the case that all research projects will require approval from an REC. The NHS Research Ethics Service can help researchers decide if an NHS REC application is necessary or you can use this useful online tool developed by the Medical Research Council (MRC). eDRIS can help you with completing the NHS REC application itself.
The NHS Scotland PBPP is the independent panel which reviews and scrutinises applications from researchers wishing to use NHS data. The purpose of the panel is to ensure that the public benefit and privacy implications of projects have been fully thought through by applicants, and to ensure that any risks to the privacy of individuals is minimised. All researchers wishing to use NHS health data for non-direct care must apply for permission through the PBPP. eDRIS can help researchers with completing PBPP applications.
Together with specialists in the Scottish Governments Data Sharing and Linkage Unit, the SCADR is a research centre hosted by the University of Edinburgh, but involves researchers from all over Scotland. SCADR’s mission is to produce policy-relevant research using Scottish administrative data resources and to develop new linked datasets for research use. Their researchers study an array of critical issues in Scotland including health and social care, poverty and fair work, and safe communities.
The SLS is a large-scale linkage study created using data from administrative and statistical sources. It provides pre-linked data for a 5.3% sample of the Scottish population, including Scottish Census data, vital events data, migration data, education data, and so on. These linkages have recently been extended to health data such as hospitalisations and prescriptions. As data is pre-linked, the approval and access procedures are much faster for SLS data. Most SLS studies require a single application. On approval, each study is assigned a project coordinator who can help tailor the requested variable list, and who will perform statistical disclosure control on study output.