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

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.htmhttp://www.wellcome.ac.uk/About- us/Policy/Spotlight-issues/Data-sharing/index.htm

5. 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?

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.ukd.carr@wellcome.ac.uk