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The Northern Ireland Longitudinal Study: An Introduction

This article provides an overview of The Northern Ireland Longitudinal Study (NILS), including its background, research-driven approach, and cross-sectional studies. It explores the use of NILS in analyzing changes over time and discusses the confidentiality protections in place. The article also highlights NILS' funding, infrastructure, and the linkage potential with other health and social care datasets. Policy outreach efforts and potential future developments of NILS are also mentioned.

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The Northern Ireland Longitudinal Study: An Introduction

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  1. The Northern Ireland Longitudinal Study: • An Introduction

  2. Background to the NILS • Research-Driven • Cross-sectional studies: change over time? • ONS-LS since 1971 Census • Health & socio-demographic profile • Legislation • NILS confidentiality protected, managed under census legislation • NISRA have consulted: • Information Commissioner for Northern Ireland • Office of Research Ethics NI • Health and Social Care Privacy Advisory Committee • Funding • Infrastructure funded by the HSC R&D Division & NISRA • Research funded by ESRC Census Programme and NI Executive

  3. Structure of the NILS

  4. Birth of Child Birth of Child Census Census Census Stillbirth Divorce Cancer Death Address Change Address Change Marriage Example 27-year old Female in 1991 | | | | | | | | | | | | | | | | | | | | | | | 1991 2001 2011

  5. Northern Ireland Longitudinal Study (NILS) – 28% sample (c. 500,000), based on health card registrations, routinely linked to: 2001 Census & 1991 Census (part) vital events (births, deaths) change of address (health card registration) AND potential to link to distinct Health & Social Care datasets (Not for today) Northern Ireland Mortality Study (NIMS) – total enumerated population in 2001 Census Day linked to: 2001 Census returns subsequently registered mortality data Introduction to the NILS and NIMS

  6. Datasets Routinely Linked

  7. Access: • NILS data is highly controlled: • access only within ‘safe setting’ (McAuley House); • user licenses & security policies; • no tabulated cell counts less than 10; and • all outputs cleared by NISRA staff.

  8. Policy Outreach • Obvious policy-relevance • Government researchers involved in NILS projects • researchers engage policy-makers with their findings • personal contact (formalised through application) • dissemination of findings through: • NILS-RSU Ezine ‘NILS News’ / email alerts • NILS Research Briefs • NILS-RSU website • NILS User Group / Research Forum • promotional activities i.e. seminars, workshops & conferences, +++

  9. www.nils-rsu.census.ac.uk

  10. NILS Research Support UnitNorthern Ireland Statistics and Research AgencyMcAuley House2-14 Castle StreetBelfastBT1 1SATel: 028 90 348138 Email:nils-rsu@qub.ac.ukWebsite:nils-rsu.census.ac.uk

  11. Distinct Linkage Projects (DLPs) • Potential to link NILS to HSS data for one-off studies; • so far Breast Screening, Dental Activity & Prescribing • Legal, ethical and privacy protection protocols: • NILS Research Approval Group • Ethical approval – ORECNI • Data Transfer Agreement • HSC Privacy Advisory Committee informed • One-way encryption – more later

  12. Potential projects: Rural health inequalities Caregiving and mental health Population movement in Neighbourhood Renewal Areas Health card registration address change accuracy Linkage developments: NILS Census 2011 Hospital Inpatients System admissions data Future Developments

  13. The Northern Ireland Longitudinal Study: An Introduction

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