The Northern Ireland Longitudinal Study:

1. 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

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

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

4. Introduction to the NILS and NIMS • Northern Ireland Longitudinal Study (NILS) – 28% representative sample of NI population (c. 500,000), based on health card registrations, linked to: • 2001 Census returns • vital events (births, deaths and marriages) • demographic & migration events AND • distinct Health & Care datasets • Northern Ireland Mortality Study (NIMS) - enumerated population at Census Day (c.1.6 million), linked to: • 2001 Census returns • subsequently registered mortality data Both NILS and NIMS linked to contextual and area-based data: • capital value of houses and property attributes • geographical indicators • settlement classifications • deprivation measures

5. Structure of the NILS

6. Datasets Routinely Linked

7. Background to the NILS and NIMS • Research-Driven • cross-sectional studies: no information on change over time • other UK LS • health and socio-demographic profile of NI • Legislation • confidentiality protected, and managed, by NISRA under census legislation • NISRA have consulted the following about NILS: • Information Commissioner for Northern Ireland • Office of Research Ethics • Health and Social Care Privacy Advisory Committee • Funding • 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)

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

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

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

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

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

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

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

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

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

17. Distinct Linkage Projects (DLPs) • 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 • 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) • One-way encryption methodology: • developed in Scotland to safeguard sensitive census and health and care data • datasets are matched and merged on an encrypted unique identifier • researchers not involved in the linkage processes; only have access to an anonymised dataset

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

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

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

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

23. Research Findings: Examples of Two • NILS Projects • 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. • 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

24. 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

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

26. 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.

28. Suicide (Daily Mirror)

29. Background: 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: ORECNI ethical approval PAC commendation one-way encryption all analyses carried out in NISRA – safe setting Uptake of Breast Screening

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

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

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

33. Policy implications • Urban dwellers less concerned about health? • Difficulties informing women in some areas? • Difficulties with access to clinics and/or opening times? • Perhaps not non-attenders but non-invitees? • 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.

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

35. 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.

36. 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