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Presentation to the Research Sector
Transparency Board
8 May 2014
Nicola PerrinWellcome Trust
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Sharing research outputs: our position• committed as a funder to ensuring
research outputs (including papers & data) are made available in a way that maximises benefits to health and society
• our policy requires data management and sharing plans at application stage, where proposed research likely to generate data of value as a resource of the wider community
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Major barriers and challenges• there are significant barriers &
constraints to overcome: Infrastructural issues
Cultural issues
Technical issues
Professional issues
Ethical issues
• different disciplines at very different stages; different types of data raise distinct issues
• challenges will require funders to work in partnership, with each other & other key communities
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Working in partnership
•ELIXIR – sustainable infrastructure for European life science data
•Expert Advisory Group on Data Access – advice on emerging issues relating to data access across genetics, epidemiology and social sciences
•Public Heath Research Data Forum – global cross funder initiative to increase access to research data generated by public health and epidemiology research
•Clinical Trial Data – funded programme of work with IOM and seeking to build an international consortia
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• gauged the views of researchers, data managers and other key stakeholders
• emerging key messages are that:
- data management is often neither planned nor resourced adequately
- data outputs carry very little weight in key assessment processes
- data managers often have limited career paths are afforded a relatively low status
- new metrics have a role, but awareness is low
- very few consequences for not sharing data
EAGDA’s report on incentives and cultural change
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Future priorities – closing thoughts• Culture change
o Focus on rewarding good practice, enhancing support
o Concordat a significant step forward
• Sustainable infrastructure
o Will have significant cost implications
o Federated portal approach may be better, with coordination
• Discoverability
o Good quick win
o Public Health Research Data Forum report due out in July
• Need to rebuild public trust
o Range of case studies for comms
o But also need clearer safeguards
• Regulation and governance
o EU Data Protection Regulation
o Criminal sanctions for reidentification
o Need to consider commercial access
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Further informationhttp://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/index.htm
http://www.wellcome.ac.uk/openaccess
http://www.wellcome.ac.uk/publichealthdata
http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/EAGDA/index.htm
http://www.wellcome.ac.uk/News/Media-office/Press-releases/2014/WTP055974.htm