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Presentation to the Research Sector Transparency Board

This presentation discusses the Wellcome Trust's commitment to sharing research outputs and the barriers and challenges they face. It also highlights the importance of partnerships and provides recommendations for future priorities. Additional information and resources are provided.

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Presentation to the Research Sector Transparency Board

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  1. Presentation to the Research Sector Transparency Board • 8 May 2014 • Nicola Perrin • Wellcome Trust • n.perrin@wellcome.ac.uk

  2. 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

  3. 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

  4. 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

  5. EAGDA’s report on incentives and cultural change • 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

  6. Future priorities – closing thoughts • Culture change • Focus on rewarding good practice, enhancing support • Concordat a significant step forward • Sustainable infrastructure • Will have significant cost implications • Federated portal approach may be better, with coordination • Discoverability • Good quick win • Public Health Research Data Forum report due out in July • Need to rebuild public trust • Range of case studies for comms • But also need clearer safeguards • Regulation and governance • EU Data Protection Regulation • Criminal sanctions for reidentification • Need to consider commercial access

  7. Further information • http://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 • n.perrin@wellcome.ac.uk

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