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 . UKOLN is supported by: This work is licensed under a Creative Commons Licence Attribution-ShareAlike 2.0

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

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

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

Incremental Project Report, June 2010 http://www.flickr.com/photos/mattimattila/3003324844/ “Departments don’t 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

“Data sharing was more readily discussed by early career researchers.” “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

…but many researchers don’t share… Heather Piwowar …but many researchers don’t share… …and are reluctant to re-use data…

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

Incremental Project Report, June 2010 “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.” The majority of people felt that some form of policy or guidance was needed.... Incremental Project Report, June 2010

2. Future Data Landscape ? Genomics exemplar

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

Researchers need.... Large-scale data storage that is: Cloud services? 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.”

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

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24 published & almost 200 unpublished

They have shared their data….

Share my data Data sharing policy?

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

P4 medicine Genome scale network biology Genomic data as a commodity Each patient’s 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

Sage Bionetworks : Integrative genomics Stephen Friend 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

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

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

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

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

Incentives? Calls for action, new metrics

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

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

3. Policy guidance, planning tools, Code of Conduct

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

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

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

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

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

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