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Mind the Gap: Reflections on Data Policies and Practice
Dr Liz Lyon, Director, UKOLN, University of Bath, UKAssociate Director, UK Digital Curation Centre
JISC/CNI Conference, Edinburgh, July 2010
.This work is licensed under a Creative Commons LicenceAttribution-ShareAlike 2.0
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
1. Current Practice
1. Scale, Complexity, Predictive Potential
2. Continuum of Openness3. Citizen Science4. Credentials, Incentives, Rewards5. Institutional Readiness &
Response6. Data Informatics Capacity &
Capability
http://www.ukoln.ac.uk/ukoln/staff/e.j.lyon/publications.html#november-2009
•Open Science at Web-Scale Report
INCREMENTAL Project
Scoping study : institution perspective
• Creating & organising data• Storage and access• Back-up• Preservation• Sharing and re-use
“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
http://www.flickr.com/photos/mattimattila/3003324844/
“While many researchers are positive about sharing data inprinciple, they are almost universally reluctant in practice. ..... using these data to publish results before anyone else is theprimary way of gaining prestige in nearly all disciplines.” INCREMENTAL Project
“Data sharing was more readily discussed by early career researchers.”
Heather Piwowar
…but many researchers don’t share…
…and are reluctant to re-use data…
“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
“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....
2. Future Data Landscape ? Genomics exemplar
...Next next generation technology race to market
$1000 genome in <15 minutes ....by 2013?
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.”
The “new” genome informatics ecosystem The case for cloud computing in genome informatics. Lincoln D Stein, May 2010
Data storage policy?
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.”
Leroy Hood – Institute for Systems Biology
Image from Scientific American
...“medicine is going to become an information science”...
P4 medicine• 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 therapiesGenome scale network biologyGenomic data as a commodity
• 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
Participatory medicine : share data &empower the patient...
Sage Congress San Francisco April 2010
“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
Results data : validate in professional press
Public participation, citizen science
Data policy for public engagement?
• Faculty attitude & culture• Professional : amateur
Calls for action, new metrics
Incentives?
• Journal
• Article
• Workflow
• Visualisation
• Model
• Data
• Annotation
• Concept
Macro
Attribution granularity
Complexity : what are we citing?
Micro / Nano
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
http://www.dcc.ac.uk/dmponline
DMP OnlineCurrently updating Version 2.0Version 3.0 summer 2010
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
Chicago Mart Plaza, 6-8 December 2010
Thank you…