A Scotland-wide Data Linkage Framework for Statistics and Research: Consultation Paper on the Aims and Guiding Principles

The main purpose of this consultation is to seek views on the aims of the Data Linkage Framework and a draft set of guiding principles.


A: 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

Explicit agreement by the data subject for his or her personal data being processed for a specific purpose.

Data Controller

The organisation (or individual) legally responsible for a dataset and who determines the purposes for which and the manner in which personal data are to be processed. This may be carried out jointly or with other persons.

Data custodian / Data Guardian

A person, normally appointed from within an organisation, tasked with the responsibility of ensuring compliance with safe, secure and appropriate processing of personal data in connection with the legitimate functions/activities of the organisation.

Data subject

Person to whom data relates: an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identification number or to one or more factors specific to his physical, physiological, mental, economic, social or cultural identity.

Data recipient

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

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.

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.

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".

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.

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.

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.

Contact

Email: Andrew Paterson

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