march 2009 from policy to strategy peter dukes policy lead – data sharing & preservation esds...
TRANSCRIPT
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March 2009
From policy to strategy
Peter DukesPolicy Lead – Data Sharing & Preservation
ESDS - Sharing Research Data: Pioneers, Policies and Protocols
13th March 2009
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• “Sharing” is a good thing
• Data diversity
• Other challenges
• MRC Data Support Service project
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Internationally : Data sharing is a good thing
OECD policy study
• “Publicly-funded research data are a public good produced in the public interest”
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Nationally: Data sharing is a good thing
• 7 UK Research Councils
• Common datasharing policy
• Wellcome Trust
• Archives & repositories• ESRC: Archive and Data service
• NERC & STFC: Data Centres
• Informatics• Databases & tools
• Research
• E-science Infrastructure• Software tools
• Grids
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“Sharing” can mean…
• Comparative analyses between independent data sets• Replication of findings from one dataset in another
• Pooling of like data from different studies• E.g. Individual patient data meta analysis – randomised clinical
trials
• Gain in statistical power definitive answers
• Linkage of different kinds of data that relate to a common set of individuals• Interactions between causative factors
• Re-analysis• Validation, audit
• Methodology development
• Testing of new hypotheses
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Leadership, partnership, investment
Data sharing: Realizing the value of our data for new knowledge and better health
“Omics” Cohorts &Trials
BioBanks
Patient groups
Demographicdata
Investment in methodology, strategic skills
& infrastructure
Connecting for new knowledge better health
EducationalEnvironmental
& SocialData
NHSClinicalData
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Strategies for promoting sharing
Fund excellent research
Innovate methods &
develop capacity
Support & value great data
management
Rich, diverse, high quality
Cross cohort e.g. HALCyon
Determinants of healthy ageing
Diverse, routine patient data
NHS Research Capability
Programme
Outcomes of interventions
Population health science
E-health records research
Data capture
ITC & data infrastructure
Study design
Analysis
Asking the Q
Methods development
Skills
Nurture research participants
Research cohorts PatientsCommunication
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MRC policy
• Data sharing is the norm – in the public interest
• Researchers should submit DSP plans as part of grant proposals
• The plans will be assessed as part of peer review
• Access rules should be clear• Transparent governance
• MRC does not prescribe the period for PI’s exclusive use
• Recognition that creators add value
• MRC will fund preservation & sharing
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MRC is a diverse & devolved organisation
• Hitherto
• Hardly ever…
• Never!
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• “Sharing” is a good thing
• Data diversity
• Other challenges
• MRC Data Support Service project
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Data-resources are diverse
Databases, archives, biobanks…• Community resources
• Set up & funded to ingests & share data
• Data user-led oversight
• Funded as a resource & service• Performance: data service quality
Clinical & population studies…• Science-focused• Set up by Principal Investigators
• Nurtures the cohort• Collects, cleans & analyses data
• Funded as research grants• Performance: science outputs
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Some data-resources are not set up for research
Routine data of value for policy & research
• Data not collected for research• NHS clinical & management
data• Social services data…• Education…• Data to support service
improvement and policy
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Data Preservation: Sustaining the value of our data for new knowledge and better health
• Real issue of non-digital data
• Fragility and corruptibility of paper, fiche & digital media
• Real issues with digital data
• Hardware, software and formats become obsolete
• Without metadata, the research data have little or no value
• Selectivity
• Cost, value and ethics
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• “Sharing” is a good thing
• Data diversity
• Other challenges
• MRC Data Support Service project
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• “Sharing” is a good thing
• Data diversity
• Why doesn’t MRC just get on with it!
• MRC Data Support Service project
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• “Sharing” is a good thing
• Data diversity
• ESRC, NERC… have been doing it for decades!
• MRC Data Support Service project
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What MRC Council says…
MRC Council says
• Data sharing is the norm – in the public interest
• Researchers should submit DSP plans as part of grant proposals
• The plans will be assessed as part of peer review
• Access rules should be clear• Transparent governance
• MRC does not prescribe the period for PI’s exclusive use
• MRC will fund preservation & sharing
Hierarchy
MRC Council & Executive
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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What science leaders say…
Science leaders say
The benefits include
• Validation of research findings
• Testing of new & alternative hypotheses
• Validation of new methods
• Creation of new data sets• Mining new “seams” in large data sets• Systematic analysis of trials data• Data linkage
• “Encourages diversity of analysis and opinion”
• Challenge previous findings
MRC Council & Executive
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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What PIs are actually doing now…
National Survey of Health & Development
HALCyon• Focused on healthy ageing
• Physical & cognitive capability
• Psychological & social well-being
• Biology of ageing
• 23 scientists in nine UK cohorts• Methodology
• Knowledge transfer
• Collaborative science
– Inter-relationships between indicators
– Changes in indicators with age
– Common lifetime determinants
Data Access Project
Unit Directors
Professor Di Kuh
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Some scientists have concerns…
But some study PIs say…
• “The idea is OK, but for many investigators restricted access to their data set is their intellectual capital”
• “Not everyone can be a scavenger feeding off the work of others”
• “You can’t just put it all up there on the web!”
• “Data protection regulation places scientists at risk”
MRC Council & Executive
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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We need to address risks…
Concerns PIs have identified…
• Risk to competitive advantage• Intellectual property• Lack of recognition
• Reputational risks• to the study• to their science
• Risk of participant withdrawal• Loss of statistical power
MRC Council & Executive
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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What Data Managers say (2008)
Hierarchy Benefits of an Infrastructure for Sharing
• Preventing loss of knowledge
• Preserving the value of historic investment
• New opportunities for collaboration
• Discovery
• Open up legacy assets
• Networking & spread of good practice
MRC Council
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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What Data Managers say (2008)
Hierarchy Benefits of an Infrastructure for Sharing
• Technical enhancements
• Automation – reduced burden
• Up to date guidance
• “No need to ‘roll your own’”
• More effective induction & training
• Greater cost effectiveness across MRC
• Confident partnerships – NHS, other RCs
• But we need resources and support from the top
MRC Council
Funding Boards
Unit Directors
Study PIs
Data scientists & Managers
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What and say
Public survey shows• The public has concerns about
(mis-)handling of personal information
• Most people do not distinguish between health records and research records
• Some people object to their anonymised health data being shared
But also• “Won’t someone please use my
health records to help someone else suffer less!”
• Acceptance is high following patient / public engagement in a specific research study
Patients & Public
Media
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Some barriers to policy implementation
1. Little evidence of real benefits and costs
2. Uncertainty about researchers real needs and solutions
3. Complex regulatory environment
4. Complexity: everything is connected to everything else
MRC Data Support Service to address barriers
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• “Sharing” is a good thing
• Data diversity
• Challenges
• MRC Data Support Service project
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The Data Support Service Project
• March 2009: DSS Project “soft launch” • Consortium
• Science and Technology Facilities Council (STFC)
• University College London (UCL)
• University of Oxford
• Working with MRC community• 6 pioneer Units / Programmes
• 2006: MRC Council approval in principle for a Data Support Service
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In two years, we expect to see…
• A web-based directory of 100+ population studies
• With evidence of use & value
• Accessible guidance, targeted to real needs
• With evidence of use & value
• Study-specific strategies for preservation & sharing
• With evidence of benefits & costs
• Evidence of cultural & practice changes• Unaware aware informed advocate• Community engagement in standards
development
• Experience informing an evolving DSP strategy