Strategies employed by the UK Millennium Cohort Study to foster sustainability and

ownership: lessons for developing country contexts

Emla Fitzsimons

Florence, 15th October 2014

Centre for Longitudinal Studies (CLS)

The Centre for Longitudinal Studies (CLS) is a resource centre based atthe 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)

Centre for Longitudinal Studies (CLS)

These studies are a resource for researchers worldwide

Emphasis is on collecting data of long-term significance rather thanimmediate (short-term) policy concerns

For info on data collected and when: http://www.cls.ioe.ac.uk/

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

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

Millennium Cohort Study (MCS)

Funding contd.

- In the past, have allowed some collaborators to finance additional data collections (mainly biomedical)

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

Millennium Cohort Study (MCS)

- Funding from collaborators has been to varying degrees of success; partly because of conflicting cultures of data sharing

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 Essexand 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

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

Sustainability

5. Innovation

- in survey design and implementation, measurement, methodology…

6. Regular engagement with funders

- Minimum 3 times a year

- Also champion the study

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!

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… )

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