following lives from birth and through the adult years The Role of Record Linkage in the UK Millennium Cohort Study Eucconet Workshop Bergen June Heather Joshi, Centre for Longitudinal Studies Institute of Education, University of London

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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.

following lives from birth and through the adult years The UK Millennium Cohort and other studies  MCS children born First national birth cohort study for 30 years  Includes Northern Ireland Other longitudinal resources: ALSPAC – birth cohort born around Bristol 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

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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

following lives from birth and through the adult years MCS Response: Families COUNTRY Number of Sampled Wards MCS1 Achieved Sample MCS2 Achieved Sample MCS3 Achieved Sample MCS4 Achieved Sample ENGLAND WALES SCOTLAND N IRELAND TOTAL UK

following lives from birth and through the adult years The Millennium Cohort Study content at glance

following lives from birth and through the adult years 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 Special treatment of disclosive variables.

following lives from birth and through the adult years 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  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), British Journal of Obstetrics and Gynaecology 

following lives from birth and through the adult years Administrative data linkage for which consent sought at MCS4 Cohort Member SiblingsParents Health Education Economic

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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.

following lives from birth and through the adult years 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.

following lives from birth and through the adult years 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

following lives from birth and through the adult years 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.

following lives from birth and through the adult years 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:  and