Data Matters Wellcome Trust perspective Dryad-UK Meeting 28

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

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 £ 600 m 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 Hap. Map, 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/Aboutus/Policy/Spotlight-issues/Data-sharing/index. htm

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

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