Care Home Data Review - Full Report

Annex 3: Glossary

ACC: Augmentative and Alternative Communication

ADR: Administrative Data Research (Scotland)

Anonymised Data: Anonymised data is data that does not relate to an identified or identifiable individual. This could include data that never included anything identifiable – for example, an anonymously filled in opinion survey. Anonymous data may be presented as general trends or statistics. Information about small groups or people with rare conditions could potentially allow someone to be identified and so would not be considered anonymous. Source: Information Commissioners Office (ICO)

CHAT: Care Homes Assessment Tool

CHDR: Care Home Data Review

CHD: Care Home Data working group

CHI: The Community Health Index (CHI) is a population register, which is used in Scotland for health care purposes. The CHI number uniquely identifies a person on the index.

CI: Care Inspectorate

CMDS: Core Minimum Dataset

COSLA: Convention of Scottish Local Authorities

COVID-19: Coronavirus Disease 2019

CSO: Chief Scientist Office

DACHA: Developing resources And minimum data set for Care Homes’ Adoption

Data Controller: The natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data. (Source: Information Commissioners Office (ICO))

Data Ethics: An emerging branch of applied ethics that studies and evaluates moral problems and describes the value judgements related to data in order to formulate and support morally good solutions. The aim of data ethics is to promote responsible and sustainable use of data for the benefit of people and society and ensure that knowledge obtained through data is not used against the legitimate interests of an individual or group while identifying and promoting standards, values and responsibilities that allow us to judge whether decisions or actions are appropriate, ‘right’, or ‘good’. Source: Data Ethics Framework: glossary and methodology - GOV.UK (www.gov.uk)

Data Linkage:Linking two or more datasets together using a common identifier.

Data / Statistics producer:In this report, these terms refer to the organisations responsible for collecting and / or publishing national level statistics on care homes (e.g. Scottish Government, Public Health Scotland, Care Inspectorate).

Data / Statistics provider:In this report, these terms refer to the organisations that provide data to the data / statistics producers (e.g. Care Homes, Local Authorities, Health & Social Care Partnerships)

DHI: Digital Health & Care Innovation Centre

Digital Office: Digital Office support Scottish local authorities with their digital transformation

ESRC: Economic & Social Research Council

EDIP: Equality Data Improvement Programme

ENRICH: Enabling Research In Care Homes

Ethical review: A process which considers and accesses the ethical implications of a project.

FPNC: Free Personal Nursing Care

GEARED Up: Care Home Data: Governance, Ethics, Access and Readiness through an Exemplar Demonstration (report)

GP: General Practitioner

HACE: Health & Care Experience Survey

HSC: Health & Social Care

HSCP: Health & Social Care Partnership(s)

HSC-PBPP: Public Benefit and Privacy Panel for Health & Social Care

IPC: Infection Protection and Control

ICT: Information & Communications Technology

IT: Information Technology

LAs: Local Authorities

LADDeR: Landscape Assessment of Data and Digital Readiness of Scottish Care Homes (report)

LASWS: (Scottish) Local Authority Social Work Services

LIST: Local Intelligence Support Team

Longitudinal data: Longitudinal studies involve repeated observations of the same subjects, allowing researchers to analyse change at the individual level. (Source: Longitudinal data and studies — UK Data Service)

PHS Metadata Catalogue: A searchable database created by Public Health Scotland containing metadata on publicly available health and wellbeing indicators for Scotland. The catalogue includes data from various sources including Public Health Scotland, the Office for National Statistics and the Scottish Government. The catalogue can be accessed via the ScotPHO website.

MIS: Management Information System

MVP: Minimum Viable Product

NDP: National Digital Platform

NHS: National Health Service (Scotland)

NCS: National Care Service

Official Statistics: Official statistics are statistics produced by Crown bodies and other organisations listed within an Official Statistics Order, on behalf of the UK government or devolved administrations. They provide a factual basis for assessment and decisions on economic, social and environmental issues at all levels of society. (Source: UK Statistics Authority)

Open Data: Open data is non-personal and non-commercially sensitive. Open data is easily discoverable, accessible to anyone and able to be freely used, re-used and redistributed by anyone. Open Data is data made available, via the internet, in an electronic format which supports its ready re-use, and with open licensing which allows its reuse.

OSR: Office for Statistics Regulation

PHS: Public Health Scotland

PPE: Personal Protective Equipment

PPI: Patient and Public Involvement

Pseudonymisation: Refers to techniques that replace, remove or transform information that identifies individuals, and keep that information separate.

PSD: Practitioner Services Division, NHS National Services Scotland

Public benefit: In general, public benefit can refer to the positive impacts that the project will have for the wider public. (Source: Data Ethics Framework 2018)

RDS: Research Data Scotland

RECs: Research Ethics Committees (e.g. NHS RECs, University RECs)

RICH Voices: Research In Care Homes Voices - patient and public involvement group

RMDS: Adult Social Care Reporting Minimum Data Specification

Safe haven: In Scotland there are four regional safe havens and one national safe haven. Each are delivered in partnership between NHS Boards and a university. Operating independently to agreed standards they provide advice, support and a secure environment for access to a wide range of research datasets while protecting the confidentiality of the data.

SCAU: Social Care Analytical Unit (Scottish Government)

SCDD: Social Care & Delayed Discharge Dashboard

SCDIPB: Social Care Data & Intelligence Programme Board

SCDIEG: Social Care Data & Intelligence Executive Group

SCHC: Scottish Care Home Census

Scotstat: Scottish Government’s email notification system for statistics publications, events and consultations.

SG: Scottish Government

SHT: Safety Huddle Tool (now Turas Care Management Data Collection

Source Social Care Return: Scotland wide social care data collection (PHS)

SPBPP: Statistics Public Benefit and Privacy Panel

SSSC: Scottish Social Services Council

TCM: Turas Care Management

ToR: Terms of Reference

Trusted Research Environment:Trusted Research Environments, or TREs, are highly secure computing environments through which approved researchers can access de-identified data and work on approved projects of public benefit. Within Scotland, TREs are often referred to as data safe havens while in other nations, TREs are sometimes known as secure data environments. (Source: Research Data Scotland)

Turas: Digital platform developed by NHS Education for Scotland

UK: United Kingdom

UnPiCD:Understanding Pathways into Care homes using Data

UPRN: Unique Property Reference Number

WSW: Whole System Winter Dashboard