Data management and sharing: the Wellcome Trust’s approach

1. Data management and sharing:the Wellcome Trust’s approach • Economic & Social Data Service conference 13 March 2009 David Carr The Wellcome Trust (d.carr@wellcome.ac.uk)

2. 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

3. 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

4. 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)

5. 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

6. Data Management and Sharing Policy • Trust’s 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

7. 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

8. 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

9. 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