A presentation by Emla Fitzsimons as part of the Sustainability and Ownership panel discussion at the International Symposium on Cohort and Longitudinal Studies in Developing Contexts, UNICEF Office of Research - Innocenti, Florence, Italy 13-15 October 2014

1. Strategies employed by the UK Millennium
Cohort Study to foster sustainability and
ownership:
lessons for developing country contexts
Emla Fitzsimons
Florence, 15th October 2014

2. Centre for Longitudinal Studies (CLS)
The Centre for Longitudinal Studies (CLS) is a resource centre based at
the Institute of Education, University of London.
CLS runs 3 of the UK’s world-renowned longitudinal birth cohort studies
• National Child Development Study (1958 cohort)
• British Cohort Study (1970 cohort)
• Millennium Cohort Study (2000 cohort)

3. Centre for Longitudinal Studies (CLS)
These studies are a resource for researchers worldwide
Emphasis is on collecting data of long-term significance rather than
immediate (short-term) policy concerns
 For info on data collected and when: http://www.cls.ioe.ac.uk/

4. Millennium Cohort Study (MCS)
 19,000+ children born in UK
between Sept 2000 and Jan
2002
 6th survey in 2015: cohort
members aged 14, in 3rd year of
secondary school

5. Millennium Cohort Study (MCS)
Funding
- Core-funded by the Economic and Social
Research Council (ESRC), non-departmental
public body that funds independent research in
social science
- Additional funding from government
departments and devolved administrations

6. Millennium Cohort Study (MCS)
Funding contd.
- In the past, have allowed some collaborators to
finance additional data collections
(mainly biomedical)

7. Millennium Cohort Study (MCS)
- ESRC explicitly espouses the study’s long-term
objective, reinforced by objective of making a
general purpose data resource available to the
research community
- Until recently, government dept support has
been via a consortium led by the Office for
National Statistics (ONS): this has helped protect
long-term objectives over short-term interests of
depts

8. Millennium Cohort Study (MCS)
- Funding from collaborators has been to varying
degrees of success; partly because of conflicting
cultures of data sharing

9. Sustainability
1. Design of surveys
– Highly multidisciplinary survey
– Extensive engagement with scientific community - promotes input and
ownership amongst academics
2. Data sharing and confidentiality
- Anonymised data deposited at the UK Data Service at the University of Essex
and are (mostly) available to researchers at the touch of a button
- Linked data (e.g. education, health, economic records) - special licence
arrangements
- Bio specimens: Access governed by ‘Access Committee for CLS Cohorts’,
which oversees applications for data and samples

10. Sustainability
3. Practical help with data
- CLS runs hands-on data workshops ~3 times a year
- Targeted at academics, policy makers, third sector…
4. Communication of findings
- CLS has a core communications team, who help turn
academic papers into digestible summaries appealing
to non-academics, policy makers, cohort members,
public…
- Achieves ‘measurable’ impact, strengthens the case
for continued funding

11. Sustainability
5. Innovation
- in survey design and implementation, measurement,
methodology…
6. Regular engagement with funders
- Minimum 3 times a year
- Also champion the study

12. Sustainability
Key  maintaining involvement of cohort members
and their trust
Attrition over first 5 sweeps (birth to 11): 28%
Key aspect of engagement thus far is annual
feedback of findings, mainly to parents of cohort
members (via post + internet)
- make them interesting, relevant, important,
clear, eye-catching, brief!

13. Sustainability
Engage children more as they mature  almost 14 now
- Communicate the impact of the study to them, key
findings, how policy has changed…
- Highlight the social value of research
- Stress irreplaceability in the study
- Stress data confidentiality
- Re-branding of study
- Small gifts for taking part
- Membership cards
- New website for cohort members incl. animated
videos
- Social media (twitter… )

14. Conclusion
- Engage cohort members in study
- Engage scientific community in design of
surveys and use of data
=> academic publications
- Communicate with funders + policy makers
regularly, at different stages of the study