Information governance

Information Governance ensures that the necessary safeguards for, and appropriate use of, study participants survey responses and any personal information.

The Centre for Longitudinal Studies (CLS) has responsibility for four national multi-disciplinary cohort studies – the National Child Development Study (NCDS), the 1970 British Study (BCS70), the Millennium Cohort Study (MCS) and Next Steps (formerly the Longitudinal Study of Young People in England). CLS organises data collection in the studies; prepares the data for analysis; and maintains and updates the survey databases, address databases and paper, microfiche and scanned archive of survey and other documents.

Data collection is funded from a number of sources, including the Economic and Social Research Council (ESRC), the Medical Research Council (MRC), charitable trusts and government departments and agencies. This comprises complete sweeps of all currently participating Cohort Members and follow up studies of particular sub-groups. It also includes data extracted from administrative records and linked to the survey data.

Anonymised data are deposited for use by the research community at the UK Data Archive, based at the University of Essex, and available via the UK Data Service. CLS staff carry out research using the data, sometimes in collaboration with researchers from other institutions. As far as funding permits, CLS also promotes the widest possible use of the data and provides advice and assistance to current and potential research users in the UK and overseas.

All staff are required to agree to the CLS Cohort Studies Code of Practice (document available to download). This covers the following areas:

Access to Records
Contacting Cohort Members
Release of Personal Information
Release of Anonymised Information
Publicity
Record of Contacts
Security of Records
Biological samples and genetic information
Data Collection
Contractors
Collaborative research involving collection of new data
Data destruction
Documentation of procedures and practices
Annex 1: Data Protection Act 1998 and Freedom of Information Act 2000
Annex 2: Availability of CLS Cohort Study Data
Annex 3: UK Data Service Terms of Access
Annex 4: ESRC Research Ethics Framework – Key principles

Information Standards

CLS is committed to preserving the confidentiality, integrity and availability of all the physical and electronic information assets. We are working closely with the UCL Institute of Education to look to comply with ISO27001 (the international standard describing best practice for an Information Security Management System), many of the aspects of this standard are incorporated into NHS Digital’s (formerly known as the HSCIC) IG Toolkit (see below).

Information Commissioner’s Office (ICO) Registration

CLS comes under the auspices of the University College London (UCL) ICO Registration. Registration Number: Z6364106 – 28 January 2018

Health and Social Care Information Centre (HSCIC)

The Centre for Longitudinal Studies (CLS) holds a satisfactory accreditation from NHS Digital for its Information Governance Toolkit (version 13), under organisation code: EE133902-IOE-CLS_LONGITUDINAL_STUDIES.

IOE/UCL merger

On the 2nd December 2014, the Institute of Education (IOE) joined University College London (UCL) as a single Faculty School, to be known as the UCL Institute of Education. However, the Centre for Longitudinal Studies (CLS) will continue its work as usual following the merger, and will stay in its current form within the new UCL Institute of Education. Also all Cohort Studies members’ personal information will continue to be processed in accordance with the Data Protection Act 1998, and will also be subject to the UCL Data Protection Policy.