1. following lives from birth and through the adult years www.cls.ioe.ac.uk The Role of Record Linkage in the UK Millennium Cohort Study Eucconet Workshop Bergen June 15-17 2011 Heather Joshi, Centre for Longitudinal Studies Institute of Education, University of London

2. following lives from birth and through the adult years www.cls.ioe.ac.uk Outline of talk  Introduction to the British Birth cohorts and the Millennium Cohort Study in particular  Achieved and planned record linkages  Looking to the future

3. following lives from birth and through the adult years www.cls.ioe.ac.uk British Birth Cohort Studies 1946: The MRC National Survey of Health & Development (NSHD) maternity study became longitudinal in 1948 and is still following its members, most recently at age 64 2 more perinatal studies of a week’s births: 1958: National Child Development Study (NCDS) became a follow up at age 7 when needed for enquiry on primary schools 1970: British Birth Cohort Study (BCS70) was designed from the outset to be followed up on social, economic and health fronts These two cohorts are still being followed, by CLS, into mid life at age 50 and 42. All provide multi-disciplinary evidence of about lifecourse trajectories and influences for many purposes.

4. following lives from birth and through the adult years www.cls.ioe.ac.uk The UK Millennium Cohort and other studies  MCS children born 2000-1 First national birth cohort study for 30 years  Includes Northern Ireland Other longitudinal resources: ALSPAC – birth cohort born around Bristol 1992-3 LSYPE cohort of young people starting age 14 in 2004 BHPS/Understanding Society Panel Study ONS LS, SLS census linkage studies ‘2012’ cohort funding announced March 1 2011

5. following lives from birth and through the adult years www.cls.ioe.ac.uk Objectives of MCS  To chart the initial conditions of the social, economic and health advantages and disadvantages facing new children in the new century and their consequences  To capture information for the future  To compare patterns of development with other cohorts  To collect information on previously neglected topics, such as father’s involvement and child care  To investigate the wider social ecology of the family, including community and services, splicing in geo-coded data

6. following lives from birth and through the adult years www.cls.ioe.ac.uk About the Millennium Cohort Study  Millennium Cohort Study (MCS) is a birth cohort study of around 19,000 children born in 398 areas of the UK  Children in England and Wales were born between:01/09/2000 and 31/08/2001  Children in Scotland and Northern Ireland were born between: 24/11/2000 and 10/1/2002

7. following lives from birth and through the adult years www.cls.ioe.ac.uk MCS Surveys to date  9 month Survey in 2001/2002  Age 3 Survey in 2003/2004  Age 5 Survey in 2006  Age 7 Survey Jan 2008-Jan 2009

8. following lives from birth and through the adult years www.cls.ioe.ac.uk MCS Sponsors  UK Economic & Social Research Council  ONS consortium of UK Government Departments:  ONS  DCSF  DWP  DoH  Welsh Assembly Government  Scottish Government  NI Executive  SureStart - National Evaluation in England  Children’s Fund - National Evaluation in England  Wellcome Trust  physical activity monitoring, health record linkage

9. following lives from birth and through the adult years www.cls.ioe.ac.uk MCS Response: Families COUNTRY Number of Sampled Wards MCS1 Achieved Sample MCS2 Achieved Sample MCS3 Achieved Sample MCS4 Achieved Sample ENGLAND 200115321005097178839 WALES 732761226121812018 SCOTLAND 6223361814 1628 N IRELAND 621923146515341372 TOTAL UK 39818552155901524613857

10. following lives from birth and through the adult years www.cls.ioe.ac.uk The Millennium Cohort Study content at glance

11. following lives from birth and through the adult years www.cls.ioe.ac.uk Birth Registration & Maternity Hospital Records  Consent to linkage for 90% of children and successful matching with the registration record for 89% of cohort and 75 % with hospital records.  Content and matching method varied across 4 countries. Probabilistic in Scotland only.  Where comparable, reasonable agreement between survey and admin variables. Some errors in HES detected.  The dataset was deposited with the UK Data Archive in April 2007. Special treatment of disclosive variables.

12. following lives from birth and through the adult years www.cls.ioe.ac.uk References to MCS birth linkages  Hockley, C., Quigley, M., Johnson, J., Rosenberg, R., Dezateaux, C. and Joshi, H. (2007) ‘Millennium Cohort Study: Birth registration and hospital episode statistics linkage. A guide to the dataset’. Centre for Longitudinal Studies, Institute of Education, University of London. Available online at http://www.cls.ioe.ac.uk/studies.asp?section=00010002000100130001 http://www.cls.ioe.ac.uk/studies.asp?section=00010002000100130001  Hockley, C., Quigley, M., Hughes, G., Calderwood, L., Joshi, H. and Davidson, L. (2007) ‘Linking Millennium Cohort data to birth registration and hospital episode records’. Paediatric and Perinatal Epidemiology Paediatric and Perinatal Epidemiology  Quigley, M., Hockley, C. and Davidson, L. (2007) ‘Agreement between hospital records and maternal recall of mode of delivery: Evidence from 12,391 deliveries in the UK Millennium Cohort Study’. British Journal of Obstetrics and Gynaecology, 114(2), 195-200British Journal of Obstetrics and Gynaecology 

13. following lives from birth and through the adult years www.cls.ioe.ac.uk Administrative data linkage for which consent sought at MCS4 Cohort Member SiblingsParents Health Education Economic

14. following lives from birth and through the adult years www.cls.ioe.ac.uk Child health variables  Consent to link to ‘health records’ for the cohort child asked up to age 14 at MCS4  Also covered mothers, fathers and siblings up to age 14  Consent rates:  Child: 95%, Main parent 90%, Partner 86%  Attempts to make the linkage with Hospital Episode Statistics currently in progress. Exploration of the feasibility of linking to primary care records will follow

15. following lives from birth and through the adult years www.cls.ioe.ac.uk Education  At age 5, Foundation Stage Profile – Routine teacher assessment of children at the end of first year of primary school. State schools in England only. Special collection by Department of Education for cohort children. 95% of the eligible were matched into MCS.  At age 7 consent given by 96% of parents to link cohort child and siblings (until age 16 and 14 respectively) to routine data in state schools (NPD in England). This will not be feasible in Northern Ireland. Arrangements currently being made for linkage and secure access to linked data.

16. following lives from birth and through the adult years www.cls.ioe.ac.uk Economic Records  Consent was sought to link to records on earnings and benefits held by the DWP ( Dept of Work and Pensions)  Consent obtained from 84% main, 69% partner respondents  DWP suffered a well-publicised loss of Child Benefit discs containing personal information. All record linkage projects were put on hold  There is some hope this problem is not permanent.

17. following lives from birth and through the adult years www.cls.ioe.ac.uk Other linkages in MCS  Use of geo-codes to enhance data on localities  Proximity to power lines  Rural areas  Neighbourhood deprivation May need special provisions to safeguard confidentiality  Day care settings- a subset of 301 attended at MCS2 have been linked to Ofsted inspection reports as well as auxiliary observation

18. following lives from birth and through the adult years www.cls.ioe.ac.uk Issues in data linkage  Who gives consent for how long?  How is matching done?  Who does it? – the survey, the admin source or third party?  Who owns the linked data?  How can it be used without harming confidentiality?  Data linkage is not cheap, especially where there are multiple agencies holding the admin data.

19. following lives from birth and through the adult years www.cls.ioe.ac.uk What happens next to MCS?  The next MCS survey will take place when the children are 11, in 2012, last year of primary school  We hope linked datasets will emerge from the pipeline  Analysis proceeds, including international comparisons.  Further follow-up planned for ages 14, 17, and into adulthood, funding to be confirmed.  More information:  www.cls.ioe.ac.uk and www.eucconet.com