Presentation to the Research Sector

Transparency Board

8 May 2014

Nicola PerrinWellcome Trust

n.perrin@wellcome.ac.uk

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

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

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

• 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

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

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

n.perrin@wellcome.ac.uk