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. 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

6. 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

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