Developing e-Infrastructure for wellbeing research Dermot O’Reilly Director ADRC-NI

CHaRMS main themes Health Employee wellbeing Population science ChaRMS

Map of health and care data sources Audit databases Care home Registration B.S.O. GP PRACTICE Patient Register Registers Spatial data Dental E.P.D Screening Census N.I.L.S. 28% NI Biobank Honest Broker Service DATA WAREHOUSE Child Health Primary care Social services Hospitals Laboratory Maternity Psychiatry

The Northern Ireland Longitudinal Study

Examples of NILS-based studies Area factors and health: Segregation and mental health Teenage pregnancies Change of address and mental health in children Admission to nursing homes Informal caregiving and volunteering Mixed marriage and divorce risk Social mobility Long-working hours and mortality risk Occupations and mental health A comparison of denomination and mortality risk in Scotland and Northern Ireland Effects of bereavement on mental health Factors related to uptake of breast screening

Administrative Data Research Centre – Northern Ireland Education Census & vital events H.M.R.C. Criminal Justice System Social Security Benefits ADRC Environment Housing Local authority Agriculture

The Farr institute ADRN Southampton London Belfast Manchester Swansea Dundee ADRN Southampton Belfast Swansea Edinburgh Essex (ADS)

Examples of ADRC-NI based studies Health of farmers and their families Social mobility and factors related to educational attainment Migrants: mental health and health needs Accuracy of health service address information Psychotropic medication and completed suicide Variation in glaucoma treatment compliance Variation in uptake of eye test for older people Health and uptake of social security benefits Effect of airport noise on mental health of residents

Stakeholders engagement and KTE Government and policy makers: Stormont launch Dec 2014 NI Assembly Research & information Services Senior statisticians all departments Masterclass KESS seminars Collaborating with… Dept of Health Dept of Education Dept for Communities Dept for the Economy Dept Agriculture, environment and rural affairs PSNI

Stakeholder Engagement Academia NI-wide: Invited talks to Schools, Departments, interest groups Seminars User group Data workshops Research awayday UK-wide: Web-based Research events (ADRN, ESRC,MRC etc) Visits to other centres Outreach events (ex. ESRC Festival of Social Science) International: Project linkages International Population Data Linkage Network Conference 2016 Rainbow Project: Conversations at the start of the same-sex marriage project (Martina Casey). [Note: I am not sure what further conversations Martina may have had subsequently] National Children’s Bureau: Meeting to discuss research possibilities and interests (at that point relevant data was not yet available, will be following up). Interested in using data and research to develop evidence for policy recommendations to improve children’s lives in Northern Ireland NICVA: Detail Data project focusing on Open Data and supporting CVSEs to use available data to strengthen evidence base. Conversations around how our projects could be complementary, holding joint training/seminars, etc. Trade unions: Presentation at conference on using research to make a persuasive argument and how data accessible through the ADRC-NI could support this ESRC FoSS: event specifically aimed at CVSE groups looking to make better use of data and research; building research partnerships with academics

Stakeholder Engagement: the public Organisational Principles of openness and transparency Citizen panels Lay representative Population surveys: UK-wide: ‘Dialogue on Data’ NI: Module on Life & Times Survey Specific groups Privacy Advisory Committee National Children’s Bureau (NI) NICVA The Rainbow Project Trade Unions Presentations at sector-specific conferences Outreach events ESRC Festival of Social Science Imagine Belfast: a conversation on Big Data Showcasing event Stormont Jan 2017 Rainbow Project: Conversations at the start of the same-sex marriage project (Martina Casey). [Note: I am not sure what further conversations Martina may have had subsequently] National Children’s Bureau: Meeting to discuss research possibilities and interests (at that point relevant data was not yet available, will be following up). Interested in using data and research to develop evidence for policy recommendations to improve children’s lives in Northern Ireland NICVA: Detail Data project focusing on Open Data and supporting CVSEs to use available data to strengthen evidence base. Conversations around how our projects could be complementary, holding joint training/seminars, etc. Trade unions: Presentation at conference on using research to make a persuasive argument and how data accessible through the ADRC-NI could support this ESRC FoSS: event specifically aimed at CVSE groups looking to make better use of data and research; building research partnerships with academics

Building capacity General: NILS: x2 Studentships; MPH dissertations AM & JM STATA course Support research teams (PHA, other Schools) in HBS NILS: x2 Studentships; MPH dissertations ADRC: Trained 67; (Academics, Government) Trained the trainers 15 Postdocs X5 Studentships ESRC studentships Seminar series Data workshops ESRC Methods Festival 5-7th July Bath RoI: HRB Data linkage initiative

Where are we going with this? Putting NI on the map: Data, projects, dissemination Extending our reach: Community, Voluntary and Social Enterprise (CVSE) MQ Mental health and Big data SHELs Intra UK projects: greater than the sum of the parts International Strategic capacity building: disciplines, focus - benefits Methodological Innovation: Synthetic data POD(s) Survey linkage without consent Technical solutions to resource constraints Investment: building on existing investments SDAI Programme grants

The future will be better tomorrow. Thank you: Questions? The future will be better tomorrow. Dan Quayle ADRC-NI