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The Northern Ireland Longitudinal Study: An Outline of the Research Potential for Government Users The Northern Ireland Longitudinal Study: An Outline of the Research Potential for Government Users NILS Research Support Unit: Fiona Johnston Michael Rosato Dr Gemma Catney

Seminar Outline Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Seminar Outline Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of the NILS Research Support Unit Ø Research Projects: Policy Relevant Themes Ø Policy Outreach & Government Users Ø Research Findings: Implications for Policy

Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of the NILS Research Support Unit Ø Research Projects: Policy Relevant Themes Ø Policy Outreach & Government Users Ø Research Findings: Implications for Policy

Introduction to the NILS and NIMS 1. Northern Ireland Longitudinal Study (NILS) – 28% Introduction to the NILS and NIMS 1. Northern Ireland Longitudinal Study (NILS) – 28% representative sample of NI population (c. 500, 000), based on health card registrations, linked to: Ø Ø Ø 2001 Census returns vital events (births, deaths and marriages) demographic & migration events AND Ø distinct Health & Care datasets 2. Northern Ireland Mortality Study (NIMS) - enumerated population at Census Day (c. 1. 6 million), linked to: Ø Ø 2001 Census returns subsequently registered mortality data Both NILS and NIMS linked to contextual and area-based data: Ø Ø capital value of houses and property attributes geographical indicators settlement classifications deprivation measures

Structure of the NILS Structure of the NILS

Datasets Routinely Linked Census Dataset 2001 Variables include: Age, sex and marital status Religion Datasets Routinely Linked Census Dataset 2001 Variables include: Age, sex and marital status Religion and community background Family, household or communal type Housing, including tenure, rooms and amenities Country of birth, ethnicity Educational qualifications Economic activity, occupation and social class Migration (between 2000 and 2001) Limiting, long-term illness, self-reported general health, caregiving Travel to work LPS Property Data 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 GRO Vital Events Datasets 1997 -2007 - 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 Health Card Registration Datasets 2001 -2010 - 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

Background to the NILS and NIMS 1. Research-Driven Ø Ø Ø cross-sectional studies: no Background to the NILS and NIMS 1. Research-Driven Ø Ø Ø cross-sectional studies: no information on change over time other UK LS health and socio-demographic profile of NI 2. Legislation Ø confidentiality protected, and managed, by NISRA under census legislation Ø NISRA have consulted the following about NILS: Information Commissioner for Northern Ireland Office of Research Ethics Health and Social Care Privacy Advisory Committee 3. Funding Ø Ø infrastructure funded by the Health and Social Care R&D Division of the PHA and NISRA research support function funded by ESRC and NI Government (OFMDFM)

NILS Research Support Unit Background: Ø Ø Ø Based: Centre for Public Health (QUB) NILS Research Support Unit Background: Ø Ø Ø Based: Centre for Public Health (QUB) and NISRA HQ (Mc. Auley House) Support: 2 full-time and 1 half-time Research Support Officers Set-up: April 2009 Remit: Ø raise awareness of the NILS research potential; Ø assist with development of research ideas and projects; Ø facilitate access to NILS data; Ø training & advice in use and analysis of NILS datasets; Ø promote policy relevance; and Ø enhance NILS research capacity incl: specific duty to assist government researchers and to undertake exemplar public policy research.

Research Support: Ø raise awareness of the NILS research potential; Ø development and feasibility Research Support: Ø raise awareness of the NILS research potential; Ø development and feasibility of research ideas and projects: big and small! Ø gaining research approval & the application process; Ø data preparation/analysis and interpretation of results (incl. training on software); and Ø dissemination and publishing of results e. g. reports and papers, web-based publications and presentations at seminars, conferences.

Access: NILS data are sensitive and access is highly controlled: Ø researchers can access Access: NILS data are sensitive and access is highly controlled: Ø researchers can access data only within a ‘secure setting’ (NILSRSU office at Mc. Auley House); arrangements can be made to run analyses remotely; Ø researchers must sign and abide by user licenses & security policies; Ø disclosure control thresholds in place to protect confidentiality of the data: no tabulated cell counts less than 10 are released; and Ø all outputs must be cleared by NISRA staff.

Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of the NILS Research Support Unit Ø Research Projects: Policy Relevant Themes Ø Policy Outreach & Government Users Ø Research Findings: Implications for Policy

Health & Mortality Ø Temperature-related mortality and housing (DSD) Ø Socio-demographic and area correlates Health & Mortality Ø Temperature-related mortality and housing (DSD) Ø Socio-demographic and area correlates of suicides Ø Distribution of cancer deaths in Northern Ireland by population and household type (NI Cancer Registry) Ø Variations in alcohol related deaths in Northern Ireland

Demographic Trends Ø Fertility in the short-run in Northern Ireland? Ø Fertility levels, and Demographic Trends Ø Fertility in the short-run in Northern Ireland? Ø Fertility levels, and future school populations, by area of residence and community background (DENI) Ø Lone mothers at time of birth: who are they? Ø Describing and modelling internal migration Ø Vital events: Standard Table Outputs (DMB) Ø Deprivation & ill-health a comparison of Scotland NI

Education, Employment & Income Ø Educational attainment and mobility (DEL) Ø Unemployment and permanent Education, Employment & Income Ø Educational attainment and mobility (DEL) Ø Unemployment and permanent sickness in NI Ø Pervasive area poverty: modelled household income (OFMDFM) Ø House value as an indicator of cumulative wealth in older people

Area-Based Analysis Ø Rural aspects of health Ø Population movement and the spatial distribution Area-Based Analysis Ø Rural aspects of health Ø Population movement and the spatial distribution of socio-economic and health status Ø Inter-censal migration flows Ø Residential concentration/segregation and poor health

Section 75 Related Ø Equality assessment of health outcomes: cause-specific mortality for Section 75 Section 75 Related Ø Equality assessment of health outcomes: cause-specific mortality for Section 75 groups (DHSSPS) Ø Mortality rates and life-expectancy: Section 75 groups and social disadvantage (OFMDFM) Ø Religious affiliation and self-reported health Ø Denominational differences in short-term mortality Ø Risk of admission to care homes for older people Ø Social harm and the elderly in Northern Ireland

Distinct Linkage Projects (DLPs) Ø Potential to link to health and social services data Distinct Linkage Projects (DLPs) Ø Potential to link to health and social services data for specially defined one-off studies; so far successfully linked to Breast Screening, Dental Activity and Prescribing data Ø Legal and ethical scrutiny and privacy protection protocols: Study period and specific data transfers agreed (DTA) Legal basis for data transfer (DTA) Health and Social Care Privacy Advisory Committee informed Ethics – database modification application (ORECNI) Ø One-way encryption methodology: developed in Scotland to safeguard sensitive census and health and care datasets are matched and merged on an encrypted unique identifier researchers not involved in the linkage processes; only have access to an anonymised dataset

DLPs Based on the NILS Ø BSO dental activity data: - adolescent dental health DLPs Based on the NILS Ø BSO dental activity data: - adolescent dental health and use of dental care services (Ph. D thesis) - child dental health and use of dental care services (ongoing) Ø QARC breast screening data: variations in breast screening uptake (submitted as Ph. D thesis) Ø BSO EPES data: use of antibiotics by demographic and area characteristics (ongoing prelim results available at NISRA Conference Nov 2010) Ø Social services admin data: children and families with long term and complex needs (ongoing)

Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of Ø Introduction & Background to the Northern Ireland Longitudinal Study (NILS) Ø Role of the NILS Research Support Unit Ø Research Projects: Policy Relevant Themes Ø Policy Outreach & Government Users Ø Research Findings: Implications for Policy

Policy Outreach NILS/NIMS data have obvious policy-relevance. There are two main ways there can Policy Outreach NILS/NIMS data have obvious policy-relevance. There are two main ways there can be policy engagement: 1. government researchers become involved in NILS projects 2. researchers (academic and government) engage policymakers with their findings Ø personal contact (formalised through project applications) Ø dissemination of findings through: - RSU Ezine ‘NILS Newsletter’ - Policy/Research Briefs - NILS-RSU website

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

Research Findings: Examples of Two NILS Projects Ø A study of the socio-demographic and Research Findings: Examples of Two NILS Projects Ø A study of the socio-demographic and area correlates of suicides in NI (005) O’ Reilly, D. , Rosato, M. , Connolly, S. and Cardwell, C. (2008) Area factors and suicide: 5 -year follow-up of the Northern Ireland population. Br J Psychiatry 192(2): 106 -11. Ø Influence of demographic, socio-economic and area level factors on uptake of routine breast screening in NI (021) Kinnear, H. , Uptake of Breast Screening: Where You live Also Matters. Presented at Society for Social Medicine Conference , QUB, Sept 2010

Area Factors & Suicide (i) Background: Suicide rates vary between areas: is this due Area Factors & Suicide (i) Background: Suicide rates vary between areas: is this due to individual characteristics (composition) or area characteristics (context)? Aim: To determine if area factors are independently related to suicide risk after adjustment for individual and family characteristics. Method: A 5 -year record linkage study, based on the NIMS database, was conducted of c. 1. 1 million individuals (not in communal establishments) aged 16– 74 years, enumerated at the 2001 Northern Ireland Census. - data anonymised and held in a safe setting

Area Factors & Suicide (ii) Results: 1. The cohort experienced 566 suicides during follow-up. Area Factors & Suicide (ii) Results: 1. The cohort experienced 566 suicides during follow-up. 2. Suicide risks: i. lowest for women and for those who were married or cohabiting; ii. strongly related to individual and household disadvantage and economic and health status. 3. The higher rates of suicide in the more deprived and socially fragmented areas disappeared after adjustment for individual and household factors. 4. There was no significant relationship between population density and risk of suicide.

Area Factors & Suicide (iii) Conclusions: Differences in rates of suicide between areas are Area Factors & Suicide (iii) Conclusions: Differences in rates of suicide between areas are predominantly due to population characteristics rather than to area-level factors. Policy implication? Policies targeted at area-level factors are unlikely to significantly influence suicides rates.

Suicide (Daily Mirror) Suicide (Daily Mirror)

Uptake of Breast Screening Background: Ø Ø Ø All women aged between 50 -64 Uptake of Breast Screening Background: Ø Ø Ø All women aged between 50 -64 invited once every 3 years for breast screening in NI Current uptake rate in UK is about 76 -77% Uptake is lower in inner city areas (London ~ 64%) Aim: To describe and explain demographic, socio-economic and area-level variations in attendance at breast screening for women who were routinely invited during the 2001 -2004 period. Method: Linking of 2 highly sensitive datasets (NILS and Breast Screening data) and therefore involved following processes: Ø Ø ORECNI ethical approval PAC commendation one-way encryption all analyses carried out in NISRA – safe setting

Uptake: demographic factors Results slides removed due to dissemination restrictions Uptake: demographic factors Results slides removed due to dissemination restrictions

Uptake: socio-economic factors Results slides removed due to dissemination restrictions Uptake: socio-economic factors Results slides removed due to dissemination restrictions

Uptake: area differentials Results slides removed due to dissemination restrictions Uptake: area differentials Results slides removed due to dissemination restrictions

Policy implications Ø Urban dwellers less concerned about health? Ø Difficulties informing women in Policy implications Ø Urban dwellers less concerned about health? Ø Difficulties informing women in some areas? Ø Difficulties with access to clinics and/or opening times? Ø Perhaps not non-attenders but non-invitees? Ø Perhaps many women in more urban areas do not receive their invitation letters because the address used by the call-recall system for the invitation letter is incorrect.

Future Plans Potential Projects Ø Pharmaco-epidemiological studies using EPES Ø Travel-to-work: do longer distance Future Plans Potential Projects Ø Pharmaco-epidemiological studies using EPES Ø Travel-to-work: do longer distance commutes lead to residential moves? Research Ideas Ø Cancer research Northern Ireland Cancer Registry data Ø Hospital admissions using Hospital Inpatient System data Ø Rural inequalities in health NILS-RSU Activity Ø NILS Research User Forum Ø STATA training Ø Working/Technical Paper Series

Acknowledgements The help provided by the staff of the Northern Ireland Longitudinal Study and Acknowledgements The help provided by the staff of the Northern Ireland Longitudinal Study and the Northern Ireland Mortality Study (NILS and NIMS) and the NILS Research Support Unit is acknowledged. The NILS and NIMS are funded by the Health and Social Care Research and Development Division of the Public Health Agency (HSC R&D Division) and NISRA. The NILS -RSU is funded by the ESRC and Northern Ireland Government. The authors alone are responsible for the interpretation of the data.

NILS Research Support Unit Northern Ireland Statistics and Research Agency Mc. Auley House 2 NILS Research Support Unit Northern Ireland Statistics and Research Agency Mc. Auley House 2 -14 Castle Street Belfast BT 1 1 SA Tel: 028 90 348138 Email: [email protected] ac. uk Website: nils-rsu. census. ac. uk