A Health and Biomedical Informatics Research Strategy for Scotland

This strategy sets out key areas for action and specific recommendations from the Health Informatics Research Advisory Group (HIRAG) on how Scotland should respond to the opportunities and challenges around the secure use of routinely collected patient data for research.

5 Glossary and List of Abbreviations

ADRC: Administrative Data Research Centre established to make routinely collected administrative data accessible for research in ways that prevent the identification of individuals, while providing a sound evidence base to inform research, and policy development, implementation and evaluation. http://adrn.ac.uk/about/

ADT: Administrative Data Taskforce (Box 8) http://www.esrc.ac.uk/collaboration/collaborative-research/adt/

Anonymisation: the process of rendering data into a form which does not identify individuals and where identification is not likely to subsequently occur.

Caldicott Guardian: a senior person in a Health Board responsible for protecting the confidentiality of patient information and authorising appropriate information sharing.

CHI: Community Health Index, a centrally maintained register of all patients registered with a GP in Scotland. Frequently used for record linkage purposes.

CHIAG: Community Health Index Advisory Group, the group that provides advice to Directors of Public Health and the Chief Medical Officer on access to the Community Health Index (CHI). http://www.scot-ship-toolkit.org.uk/roles-and-responsibilities/chiag

CSO: Chief Scientist Office, part of the Scottish Government Health and Social Care Directorates. It supports and promotes high quality research aimed at improving the quality and cost-effectiveness of services offered by NHSScotland and securing lasting improvements to the health of the people of Scotland.

CPRD: Clinical Practice Research Datalink, a research service and database of English NHS clinical data designed to facilitate observational and interventional research. http://www.cprd.com/home/

Data Controller: an individual or organisation who determines the purposes for which and the manner in which any personal confidential data are or will be processed. Data controllers must ensure that any processing of personal data for which they are responsible complies with the Data Protection Act (1998).

Data Processor: a person who processes data on instruction from the Data Controller but who does not determine the purpose and manner in which the data are processed. In the context of safe havens, it is the safe haven and all the staff involved in providing this service.

De-identified data: personal confidential data, which has been anonymised in a manner conforming to the Information Commissioners Office anonymisation code of practice.

DICOM: Data Imaging and Communications in Medicine

eDRIS: Electronic Data Research and Innovation Service (Box 5).

EHR: Electronic Health Record, a computerised record of a patient's medical history. http://www.isdscotland.org/Products-and-Services/EDRIS/

ESRC: Economic and Social Research Council, a leading UK funder of research on economic and social issues. http://www.esrc.ac.uk/

Farr Institute: The Farr Institute of Health Informatics Research, 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. http://www.farrinstitute.org/

Farr Institute Scotland: the Scottish hub of the UK wide Farr Institute and comprises six Universities and NHS National Services Scotland. http://www.farrinstitute.org/centre/Scotland/3_About.html

HSCIC: Health and Social Care Information Centre, a national provider of information, data and IT systems for health and social care in England. http://www.hscic.gov.uk/

Information governance: the management of information and data in accordance with legal requirements such as the duty of confidence and data protection, the legal basis for information sharing, key requirements in relation to information security, record management, and freedom of information.

IRAS: Integrated Research Application System is a system for applying for the permissions and approvals for health and social/community care research in the UK. https://www.myresearchproject.org.uk/Signin.aspx

ISD: Information Services Division of NHS National Services Scotland (NSS). http://www.isdscotland.org/

Linkage: the merging of data from two or more sources with the object of consolidating information concerning an individual or an event that are not available in any separate record.

MRC: Medical Research Council, a publicly funded government agency responsible for co-ordinating and funding medical research in the United Kingdom. http://www.mrc.ac.uk/

NHS National Services Scotland (NSS): provides advice and services to NHSScotland bodies. http://www.nhsnss.org/

National Records of Scotland (NRS): performs the registration and statistical functions for the Registrar General for Scotland, including responsibility for demographic statistics, the census and archival functions. http://www.nrscotland.gov.uk/

NHS Research Scotland (NRS): a partnership involving Scottish NHS Boards and the Chief Scientist Office (CSO) of the Scottish Government with the aim of ensuring that NHSScotland provides the best environment to support clinical research. http://www.nhsresearchscotland.org.uk/

PAC: NSS Privacy Advisory Committee, an advisory committee to the Board of NHS National Services Scotland and to the Registrar General. It provides advice on requests for the release of patient identifiable information. http://www.nhsnss.org/pages/corporate/privacy_advisory_committee.php

PACS: Picture Archiving and Communications System. http://www.nisg.scot.nhs.uk/currently-supporting/pacs-and-ris

Safe haven: term used to explain either a secure physical location or environment, supported by trained specialist staff working under agreed administrative arrangements within the organisation to ensure confidential personal information is processed and/or communicated safely and securely.

SAIL: Secure Anonymised Information Linkage system brings together an array of routinely-collected data from health and other public services in Wales for research, development and evaluation. http://www.saildatabank.com/

SCI store: Scottish Care Information Store, an information repository that provides clinicians with secure access to patient information at the point of care. http://www.sci.scot.nhs.uk/

SHIP: ScottisH Informatics Programme (formally the Scottish Health Informatics Programme) (Boxes 4 and 6). http://www.scot-ship.ac.uk/

SILC: Scottish Informatics and Linkage Collaboration (Box 7).

SLS: Scottish Longitudinal Study. (Box 3). http://sls.lscs.ac.uk/

SMR: Scottish Morbidity Record (Box 1).

SPIRE: Scottish Primary Care Information Resource (Box 2). http://www.spire.scot.nhs.uk/


Email: Pamela Linksted

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