david carr the wellcome trust (d.carr@wellcome.ac.uk) data matters: wellcome trust perspective...
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David CarrThe Wellcome Trust
(d.carr@wellcome.ac.uk)
Data Matters:Wellcome Trust perspective
Dryad-UK Meeting28 April 2010
The Wellcome Trust
• independent biomedical research charity (est 1936)
• our vision is to achieve extraordinary improvements in human and animal health
• we support the brightest minds in biomedical research and the medical humanities
• our breadth of support includes public engagement, education & application of research to improve health
• current spend of over £600m pa
Data sharing: a long track record…
• long-standing focus on maximising access to research outputs
• major funding for activities to develop key data resources, e.g.: international consortia (e.g. Human
Genome Project, International HapMap, etc)
funding key databases (e.g. EBI resources)
• brokering policy consensus on data sharing issues: Bermuda principles (1996), Fort Lauderdale principles (2003)
• advocate of open access publishing
Data management & sharing policy (published Jan 2007)
• all our funded researchers should maximise access to research data with as few restrictions as possible
• require data management and sharing plans for proposals involving generation of resources or large datasets that could be shared for added value
• will meet costs for data sharing activities outlined in the plans
See: http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/index.htm
• volume & complexity of research data increasing immense challenges for storage, analysis &
preservation, but also
huge potential to share data and enable generation new insights
• public & charitable funders wish to maximise data use for public benefit many have policies & requirement for data
sharing plans is becoming the norm
• recognition that: need for coordinated actions to overcome
existing barriers
different fields are at varying stages, and raise different issues
The context - why does data matter?
Major challenges to overcome
• Infrastructural:sustaining the infrastructure required for long-term data storage and curation
• Cultural:incentives and recognition for researchers who share their data
• Technical:developing data standards, metadata, platforms needed for inter-operability
• Professional:training and career development of data specialists and bioinformaticians
• Ethical:protecting the confidentiality of research participants
Moving forward – current Trust activity• reviewing our overarching data
management and sharing policy
• developing best practice principles for priority research fields: data access & governance for genetics and
cohort studies
a code of conduct for epidemiology & public health research
• engaging in key policy discussions at UK, Europe and international level, e.g. UKRDS
ELIXIR
Toronto principles (2009)
Initial perspectives on Dryad• interesting and timely model – keen to
engage in discussions
• potential synergies with key areas of interest for Wellcome Trust: sharing and preservation of research data
data sharing in epidemiology and public health research
linking publications and data – enhancing opportunities for use of underlying data
• some remaining questions: where to focus resources to ensure data
with long-term value preserved
centralisation vs institutional preservation
security and access arrangements
community buy-in essential
Further informationhttp://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/index.htm
Email: d.carr@wellcome.ac.uk
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