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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…