Joined-up data for better decisions: Guiding Principles for Data Linkage

These principles accompany the associated publication 'Joined-up data for better decisions: A Strategy for Improving Data Access and Analysis'. The guiding principles are a key element of the Data Linkage Framework for Statistical and Research Purposes. They are designed to support data custodians, researchers and other stakeholders in taking decisions about safe and effective data linkage and sharing.


Glossary

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 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.

Linker

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

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.

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.

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.

Contact

Email: Kirsty MacLean

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