following lives from birth and through the adult years the role of record linkage in the uk...

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


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


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.


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


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


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


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


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


MCS Response: Families

COUNTRYNumber of Sampled Wards

MCS1 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


The Millennium Cohort Study content at glance


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.


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


Administrative data linkage for which consent sought at MCS4

Cohort Member

Siblings Parents

Health

Education

Economic


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


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.


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.


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


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.


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

following lives from birth and through the adult years the role of record linkage in the uk...

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