David Carr

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Data management and sharingthe Wellcome Trusts
approach
Economic Social Data Service conference 13
March 2009

• David Carr
• The Wellcome Trust
• (d.carr_at_wellcome.ac.uk)

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The Wellcome Trust

• independent biomedical research charity
• established in 1936
• current spend of over 600m pa
• supports over 3,000 researchers in more than 50
  countries, across six continents
• works to engage the public in research and to
  explore its societal implications

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Mission and strategic aims
Our mission is to foster and promote research
with the aim of improving human and animal health

• We have six strategic aims
• advancing knowledge
• using knowledge
• engaging society
• developing people
• facilitating research
• developing our organisation

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Facilitating research

• we work to foster a research environment in which
  biomedical science can flourish
• we partner with others to develop key large scale
  datasets
• Human Genome Project
• Structural Genomics Consortium
• UK Biobank
• we also fund key databases via
• Wellcome Trust Sanger Institute
• European Bioinformatics Institute
• additional grant funding
• we work to maximise access to research outputs
  (publications, data and collections)

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A long track record

• brokering policy consensus on data sharing
  issues
• Bermuda principles (1996)
• Fort Lauderdale principles (2003)
• developing tailored data policies release
  policies for major initiatives (e.g. SNP
  Consortium, HapMap, etc)
• advocating and supporting open access publishing
  approaches

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Data Management and Sharing Policy

• Trusts data management and sharing policy was
  published in Jan 2007
• we expect that all our funded researchers should
• maximise access to research data with as few
  restrictions as possible
• consider their approach to data management in
  planning their research
• requirement for data management and sharing plans
  within applications
• for projects that generate resources or large
  datasets that could be shared for added value
• considered as integral part of peer review
• will meet costs for data sharing activities
  outlined in the plans

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Key challenges

• sustaining infrastructure required for long-term
  data storage and curation
• overcoming a range of technical and cultural
  issues
• policy coordination and advocacy
• provision of guidance
• researcher incentives
• standards, metadata and platforms
• developing skills in data management
• addressing data security and privacy concerns

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Engaged in a range of initiatives

• At UK level
• UK Research Data Service discussions
• range of multi-funder initiatives (e.g. NCRI
  Informatics programme)
• UK PubMed Central (PMC) development
• active discussions over research uses of
  electronic patient records
• At European level
• partner in ELIXIR project
• development of proposed Europe PMC
• At global level
• developing a code of conduct for public health
  and epidemiological data
• Fort Lauderdale follow-up meeting (led by Genome
  Canada) in May 09

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What next our current thinking

• review our policy
• what format are data sharing plans taking?
• how are they being assessed?
• what are the resource implications?
• look to supplement our policy with tailored
  guidance for researchers in different areas
• public health and epidemiology research
• genome-wide association studies
• history of medicine
• work with others to ensure key datasets are
  preserved for long-term recognise a coordinated
  approach is essential