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Joined up data for better decisions

Answering the important questions for Scotland through legal, secure, ethical and efficient data linkage

Glossary

Administrative Data

Data derived from information collected and maintained as part of an administration system, such as health records, vehicle licensing and tax systems.

Aggregate Statistics

Statistics that relate to, and provide collective information about, an entire group and do not differentiate individuals within that group.

Consent

Freely given and informed agreement by the Data Subject for his or her personal data being processed for a specific purpose.

Data Controller

An individual, organisation or body that determines the purposes for which and the manner in which any personal data are, or are to be, processed.

Data Linkage / Record Linkage

Data linkage is the joining of two or more administrative or survey datasets using individual reference numbers / identifiers or statistical methods such as probabilistic matching. See also” Indexer”.

Data recipient

Researcher who initiates a data linkage to answer a research question.  

Data Sharing Agreement

Agreement between Data Controller and data recipient clarifying: the purpose or purposes of the sharing; Who will have access; What will be shared; How the data will be transferred: Quality issues (including accuracy, relevance and usability); Data security; Retention and deletion; Review of effectiveness of sharing.

Data Subject

Individual who is the subject of personal data.  A Data Subject may be identifiable, directly or indirectly, through reference to an identification number or to one or more factors specific to his or her physical, physiological, mental, economic, social or cultural identity.

Individual Reference/Identifier

Frequently a sequence of characters and/or numbers that is used and/or assigned by an organisation to a person to identify uniquely the person for the purposes of the organisation’s systems and operations.

Information Asset Owner

Person appointed by the Senior Information Risk Owner to ensure specific information assets are handled and managed appropriately. This includes ensuring information is protected appropriately but also that it is used within the law for public good.

Index

A dataset of individual references that can be used for cross-referencing between sources.

Indexer

Individual (or body) who receives personal data from one or more Data Controllers and determines which records in each dataset relate to the same individual (or entity).  The indexer then creates a unique reference for each individual (or entity) and a corresponding key to allow the data from the different sources to be joined.

Linker

Individual (or body) who receives datasets from data controllers and links them together using a key created by the indexer.

Longitudinal Survey

A survey in which information is collected about the same group of individuals on more than one occasion over a period of time.

Personal Data / Identifiable Data

Information about a living individual who can be identified from that information and other information which is in the data controller's possession.

Privacy Impact Assessment (PIA)

A process which helps assess privacy risks to individuals in the collection, use and disclosure of information.  PIAs help identify privacy risks, foresee problems and bring forward solutions.

Population Spine

A dataset created by cross-referencing indices that allows for an accurate count of the population.

Safe Haven

A physically secure area, containing a computer, with no external devices e.g. disc, CD, USB drives or printer access, in which trusted and authorised researchers can analyse personal data.