Charter for Safe Havens in Scotland: Handling Unconsented Data from National Health Service Patient Records to Support Research and Statistics.

Glossary

Anonymised data

Data in a form that does not identify individuals and where re-identification is not possible routinely.

Approved Researcher

A professional researcher who satisfies the conditions of the relevant body (e.g. eDRIS) regarding qualifications, Data Protection and Information Governance training, affiliation and contract.

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. An annex to the Guiding Principles explains the roles and responsibilities of data controllers. See www.scotland.gov.uk/GuidingPrinciplesforDataLinkage

Data processor

A person who processes data on their own behalf or on instruction from the Data Controller but who does not determine the purpose and manner in which the data are processed. For the purposes of this charter the data processor is the Safe Haven and all the staff involved in providing this service.

Data Linkage / Record Linkage

Data linkage is the joining of two or more datasets using individual reference numbers / identifiers or statistical methods of matching such as probabilistic modelling.

De-identification (pseudonymisation)

The process of distinguishing individuals in a dataset by using a unique identifier (code) which does not reveal their ‘real world’ identity.

electronic Data Research and Innovation Service (eDRIS)

The electronic Data Research and Innovation Service (eDRIS) eDRIS is part of Information Services Division within NSS. It provides a single point of contact to assist researchers in study design, approvals and data access in a secure environment.

Farr Institute

The Farr Institute is a UK collaboration to harness health data for patient and public benefit by setting the international standard for the safe and secure use of electronic patient records and other population-based datasets for research purposes. There are four centres across the UK, of which the Farr Institute-Scotland is one.

Health informatics research

Research using the data from electronic patient records. It usually involves combining (linking) data from a number of different sources.

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 Services Division (ISD)

Information Services Division (ISD) is part of NHS National Services Scotland and provides statistical information and analysis for the NHS.

National Records of Scotland

The National Records of Scotland performs the registration and statistical functions for the Registrar General for Scotland, including responsibility demographic statistics and census and archival functions.

NHS National Services Scotland (NSS)

NHS National Services Scotland (NSS) is the organisation which provides advice and services to the rest of NHS Scotland. It includes Information Services Division.

NHS Research Scotland (NRS)

NHS Research Scotland (NRS) is a partnership involving Scottish NHS Boards and the Chief Scientist Office (CSO) of the Scottish Government with the aim of ensuring that NHS Scotland provides the best environment to support clinical research.

Personal Data / Identifiable Data / Personal Information

Information about an individual who can be identified from that information with or without other information.

Pseudonymisation (de-identification)

The process of distinguishing individuals in a dataset by using a unique identifier (code) which does not reveal their ‘real world’ identity.

Public Benefit and Privacy Panel for Health and Social Care

Governance structure of NHSScotland established with delegated authority from NHSScotland Chief Executive Officers and the Registrar General to scrutinise any use of NHSScotland controlled data and NHS Central Register data.

The http://www.informationgovernance.scot.nhs.uk/

Re-identification

The process of turning de-identified data back into personal data through the use of data matching or similar techniques.

Safe Haven

A term used to explain either a secure physical or remotely accessed environment, supported by trained specialist staff working under an agreed set of administrative arrangements with an organisation to ensure confidential personal information is processed, analysed and/or communicated safely and securely.

Scottish Informatics Linkage Collaboration (SILC)

Scottish Informatics Linkage Collaboration (SILC) is a collaboration between academic and public bodies in Scotland to deliver shared services and ensure that Scotland realises the benefits that can be derived through the legal, ethical and carefully controlled use of administrative, survey and other types of data.