Data Matters: Wellcome Trust perspective

1. Data Matters:Wellcome Trust perspective • Dryad-UK Meeting • 28 April 2010 David Carr The Wellcome Trust (d.carr@wellcome.ac.uk)

2. 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

3. 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

4. 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

5. The context - why does data matter? • 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

6. 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

7. 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)

8. 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

9. Further information http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/index.htm Email: d.carr@wellcome.ac.uk