Presentation given by David Leon, Professor of Epidemiology at the London School of Hygiene and Tropical Medicine in January 2012. Subsequently reused at various internal events

1. Doing research better
The role of meta‐data
David Leon
Professor of Epidemiology

2. Sharing Data imperative
• Consensus among Research Funders (MRC, Wellcome
Trust, ESRC, NIH etc. etc.) that studies they fund should
make their data accessible to wider scientific
community
• This does NOT mean data is “dumped” onto the web
and made freely accessible without restriction
• Emphasis on establishing principle, mechanisms and
transparent procedures
• Underpinned by belief that replication, pooling and
“new ideas for old data” advance scientific knowledge

3. Perceived and real costs of data sharing
(the researchers perspective)
• Intellectual property
• Motivation of researchers (why bother if other
researchers feed off my life’s work)
• Huge time commitment to educate 3rd party
users and tell them about what data there is,
what’s its strengths and weaknesses are etc.
• My team’s time taken up providing datasets
and servicing endless requests and queries

4. LSHTM initiative on
research data (2009‐10)
David Leon (Chair)
Taane Clark, Paul Fine, Judy Green
(Faculty representatives )
Carolyn Lloyd (Librarian)
Victoria Cranna (Archivist)
Sheena Wakefield (NST)

5. http://intra.lshtm.ac.uk/infoman/research/

6. Useful external links
https://intra.lshtm.ac.uk/infoman/research/research_resources.html

7. Key recommendations
• Develop portal/gateway for discovery of key data assets;
• Develop web‐based resources for researchers;
• Develop policies/guidance on :
– obtaining appropriately wide consent to permit data sharing,
– maintenance of confidentiality and minimising risk of disclosure of identities,
– establishment of data access processes and model data sharing agreements,
– inclusion of adequate budget lines on new grant applications (reflected in pFACT),
– best practice and minimal standards for data documentation;
• Review institutional incentives for developing meta‐data;
• Review career pathways for information specialists;
• Introduce staff, taught course and doctoral training on
documentation and meta‐data – principles and practice;
• Encourage flag ship data sets/resources to develop high
standard meta‐data and access procedures

8. Recommendations fully accepted
by SMT in summer 2011

9. Improving how we document data:
Raising standards
and lowering barriers

10. Trolley bus
syndrome

11. The codebook is here
…. somewhere

12. We can do better ….

13. What is meta‐data ?
• It’s data about data
• Two levels :
– Study‐level description
• Setting, numbers of subjects, endpoints, exposure
variables, biological samples collected
• Who to contact to find out more etc.
– Variable level description
• Instrument/questionnaire used
• Frequencies/means/missing values
• Comments on validity/utility

14. Web‐based applications provide
high level of functionality
• Enables discovery of data
• Easy to navigate (hyperlinks are great
strength)
• Can combine access to meta‐data with
documentation of instruments including
protocols, questionnaires etc.
• As appropriate allows “drill‐down” from study
level to variable‐level

15. Up‐sides of good (web‐based)
variable‐level meta‐data
• Facilitate analysis by existing researchers
• Reduce induction of new researchers in own
group or visitors
• Reduce costs of providing data to bona fide 3rd
party researchers
• Easy to edit, add to and update
• Can have “shopping‐basket” facility

16. Down‐sides of web‐based variable‐
level meta‐data
• Requires investment
– Funders claim they will pay
• Not appropriate for all studies (scale, duration
of future use)
• Lack of clarity about best platform
– DDI3 – open source looks very promising
• Limited experience at LSHTM

17. Some examples …

18. URLs
• Aberdeen Children of the 1950s cohort study
http://www.abdn.ac.uk/aconf/
• Izhevsk Family Study (registration required)
http://www.ifsmetadata.info/

19. But … no one size fits all !

21. Next steps at LSHTM

22. Research Data Management
Steering Group
• Established January 2012 by the Senior
Leadership Team
• Chaired by Professor Anne Mills (Deputy
Director Research)
• Time limited
• Links to other initiatives (eg LSHTM Research
Online)
• Resources obtained from WT (> Gareth Knight)