The Northern Ireland Longitudinal Study:

An Introduction

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

Background to the NILS

Structure of the NILS

Example

| | | | | | | | | | | | | | | | | | | | | | | 1991 2001 2011

CensusCensusCensus Birth ofChild

Stillbirth DivorceMarriage Cancer

27-year old Female in 1991

Death

AddressChange

Birth ofChild

AddressChange

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

Datasets Routinely LinkedCensus Dataset 2001 GRO Vital Events Datasets 1997-2007

Variables include:Age, sex and marital status Religion and community backgroundFamily, household or communal typeHousing, including tenure, rooms and amenitiesCountry of birth, ethnicity Educational qualificationsEconomic activity, occupation and social classMigration (between 2000 and 2001)Limiting, long-term illness, self-reported general health, caregivingTravel to work

- New births into the sample - Births to sample mothers and fathers - Stillbirths to sample mothers - Infant mortality of children of sample mothers and fathers - Deaths of sample members 2001-2007 - Marriages 2004-2006 - Widow(er)hoods 2004-2006

LPS Property Data 2010 Health Card Registration Datasets 2001-2010

Capital and rating value (based on 2005 valuation exercise)

Variables include: - Household characteristics (no. of rooms, property type, floor space, central heating) and valuation - Estimated capital value

- Demographic data: age, status and location

- Migration events: immigrants added to the sample emigration of sample members re-entry of sample members to NI migration within NI

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.

Access:

Policy Outreach

Obvious policy-relevance 1. Government researchers involved in NILS projects

2. 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, +++

www.nils-rsu.census.ac.uk

NILS Research Support UnitNorthern Ireland Statistics and Research Agency

McAuley House2-14 Castle Street

BelfastBT1 1SA

 Tel: 028 90 348138

Email: nils-rsu@qub.ac.uk Website: nils-

rsu.census.ac.uk

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

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

The Northern Ireland Longitudinal Study:

An Introduction