following lives from birth and through the adult years the role of record linkage in the uk...
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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
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
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.
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
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
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 wereborn 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 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
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
following lives from birth and through the adult years www.cls.ioe.ac.uk
MCS Response: Families
COUNTRYNumber of Sampled Wards
MCS1 Achieved Sample
MCS2 Achieved Sample
MCS3 Achieved Sample
MCS4
Achieved Sample
ENGLAND 200 11532 10050 9717 8839
WALES 73 2761 2261 2181 2018
SCOTLAND 62 2336 1814 1814 1628
N IRELAND 62 1923 1465 1534 1372
TOTAL UK 398 18552 15590 15246 13857
following lives from birth and through the adult years www.cls.ioe.ac.uk
The Millennium Cohort Study content at glance
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.
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
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
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), 195-200
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
Siblings Parents
Health
Education
Economic
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
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.
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.
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
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.
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