1. A centre of expertise in digital information management www.ukoln.ac.uk UKOLN is supported by: Mind the Gap: Reflections on Data Policies and Practice Dr Liz Lyon, Director, UKOLN, University of Bath, UK Associate Director, UK Digital Curation Centre JISC/CNI Conference, Edinburgh, July 2010. This work is licensed under a Creative Commons Licence Attribution-ShareAlike 2.0

2. Overview UK Data Policy Context –Institutions & open science –Data practice today Future landscape –Scale and complexity –Open and personal –Drivers and incentives Challenges & Actions –Planning tools –Policy Gaps

3. 1. Current Practice 1.Scale, Complexity, Predictive Potential 2.Continuum of Openness 3.Citizen Science 4.Credentials, Incentives, Rewards 5.Institutional Readiness & Response 6.Data Informatics Capacity & Capability http://www.ukoln.ac.uk/ukoln/staff/e.j.lyon/publications.html#november-2009 Open Science at Web-Scale Report

4. INCREMENTAL Project Scoping study : institution perspective Creating & organising data Storage and access Back-up Preservation Sharing and re-use

5. Departments dont have guidelines or norms for personal back-up and researcher procedure, knowledge and diligence varies tremendously. Many have experienced moderate to catastrophic data loss Incremental Project Report, June 2010 http://www.flickr.com/photos/mattimattila/3003324844/

6. While many researchers are positive about sharing data in principle, they are almost universally reluctant in practice...... using these data to publish results before anyone else is the primary way of gaining prestige in nearly all disciplines. INCREMENTAL Project Data sharing was more readily discussed by early career researchers.

7. Heather Piwowar …but many researchers dont share… …and are reluctant to re-use data…

8. They found the documents....to be dense, wordy, theoretical, ambiguous and un-engaging. Interviewees were often unaware of existing guidance, resources.... and policy documents. Incremental Project Report, June 2010

9. Many people are suspicious of policies which sound like hollow mandates, but are receptive to procedures or advice which may be essentially the same thing, but convey a sense of purpose and assistance rather than requirement. Incremental Project Report, June 2010 The majority of people felt that some form of policy or guidance was needed....

10. 2. Future Data Landscape ? Genomics exemplar

11. ...Next next generation technology race to market $1000 genome in <15 minutes....by 2013?

12. Researchers need.... Large-scale data storage that is: –Cost-effective (rent on-demand) –Secure (privacy and IPR) –Robust and resilient –Low entry barrier / ease-of-use –Has data-handling / transfer / analysis capability Cloud services?....analyse an entire human genome in a single day sitting with a laptop at your local Starbucks.

13. The new genome informatics ecosystem The case for cloud computing in genome informatics. Lincoln D Stein, May 2010 Data storage policy?

14. Post-genome decade Human genomes: >24 published & almost 200 unpublished

15. They have shared their data….

16. Share my data Data sharing policy?

17. P4 medicine : Predictive, Personalised, Preventive, Participatory. Leroy Hood – Institute for Systems Biology Image from Scientific American...medicine is going to become an information science...

18. P4 medicine Each patients genome sequenced Your genome is basis of your medical record New method to anonymise medical records for genomics research at Vanderbilt Univ (April 10) New Predictive models of health and disease Personalised treatments focus on Preventative therapies Genome scale network biology Genomic data as a commodity

19. Sage Bionetworks : Integrative genomics Open data in the Sage Commons repository Human and mouse: clinical and genetics data Develop predictive models of disease: liver / breast / colon cancer, diabetes, obesity Crowd-sourced effort : global scope Stephen Friend

20. Participatory medicine : share data & empower the patient... Sage Congress San Francisco April 2010

21. You have zero privacy anyway. Get over it Scott McNealy, CEO Sun Microsystems, 1999 Data Ethics & Privacy Policy? Significant implications for Faculty Awareness of wider societal benefits University Ethics Committee

22. Results data : validate in professional press Public participation, citizen science

23. Data policy for public engagement? Faculty attitude & culture Professional : amateur

24. Calls for action, new metrics Incentives?

25. Journal Article Workflow Visualisation Model Data Annotation Concept Macro Attribution granularity Complexity : what are we citing? Micro / Nano

26. Large-scale predictive network models of disease Multiple datasets Visualise: Cytoscape Workflow: Taverna Data citation policy?

27. 3. Policy guidance, planning tools, Code of Conduct

28. State-of-the-Art Report : Models & Tools (Alex Ball, June 2010) Data Lifecycles Data Policies (UK) incl DMP Standards & tools Data Asset Framework (DAF) DANS Seal of Approval Preservation metadata Archive management tools Cost / benefit tools

29. Data types, formats, standards, capture Ethics and Intellectual Property Access, sharing and re-use Short-term storage & data management Deposit & long-term preservation Adherence and review

30. http://www.dcc.ac.uk/dmponline DMP Online Currently updating Version 2.0 Version 3.0 summer 2010

31. Making DMPs work : the start of a long process… Embed DMPs in funder policies & research lifecycles as the norm Code of Conduct for Research Assess & review DMPs (not just the science content of proposals) Educate reviewers (DCC guidance for social science in prep) Manage compliance of researchers Infrastructure to share DMPs Analyse cost-benefits for UK HE

32. Take homes... Practice is disconnected from policy Policy Gaps –Data Storage (& Appraisal: DCC guidance in prep) –Data Sharing (& Licensing: DCC guidance in prep) –Ethics and Privacy –Citizen Science & Public Engagement –Data Citation and Attribution Collaborate with funders to make DMPs work Digital Curation Centre DMP tool & resources www.dcc.ac.uk

33. Chicago Mart Plaza, 6-8 December 2010 Thank you…