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