Administrative Data Research UK (ADRUK)
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.
Electronic Data Research and Innovation Service (eDRIS)
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.
National Records of Scotland (NRS)
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 Information Services Division (ISD)
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.
NHS Research Ethics Committee
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.
Public Benefit Privacy Panel (PBPP)
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.
Scottish Centre for Administrative Data Research (SCADR)
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.
Scottish Longitudinal Study (SLS)
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.
use MY data
use MY data is an independent UK movement that was set up in June 2015 by a number of patients, carers and relatives to address the slowdown in cancer research in the wake of the Care.data programme. Primarily, the group wanted to try and help the general public see that their data can be used in a safe and secure way which brings benefit to patients. Most importantly, the group recognised the need for this message to come from patients themselves. Quite quickly the focus of use MY data has broadened to cover all patient data, not just cancer, and the movement is now made up of Members (patients, relatives and carers) and Associate Members (clinicians, researchers, charities, researchers, public & commercial sector workers), supported by a small Secretariat. The mission statement below summarises the goals of the use MY data movement:
“use MY data is a movement of patients, carers and relatives use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes. use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all. use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.”
use MY data encourage researchers to acknowledge where they use patient data by using the following data citation: “This work uses data provided by patients and collected by the NHS as part of their care and support”.
Health Data Research UK (HDRUK)
HDRUK is the UK’s “national institute for health data science”. They fund research that utilises health and care datasets in the UK as well as provide information on the health and care datasets that are available via their Health Data Research Innovation Gateway. This Gateway provides a place for researchers to go to discover what datasets are available and how to request acccess to them. Their Health Data Research Hubs provide topic/disease specific expertise to help users understand the data that is available. Rather than controlling any datasets, HDRUK act as a link between data controllers and researchers, to improve the use of data.