april 2010 mrc data sharing policy peter dukes policy lead – data sharing & preservation
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April 2010
MRC Data Sharing Policy
Peter DukesPolicy Lead – Data Sharing & Preservation
• MRC Policy & challenges
• Data diversity
• MRC Data Support Service project
• Coordination of strategy & policies
MRC policy & challenges
• Maximising lifetime value
• Easier discovery & access
• As few restrictions as possible
• Evaluating data sharing and preservation plans at peer review
• Justify new data collection
• State restrictions & period of exclusive use
• Enhancing data value
• Quality metadata
• Technical tools & standards
• Governance & agreements
• Culture
• Collaboration & recognition
• Transparency
Policy not evaluated or well monitored
Recognition, responsibilities & rights
Data Support Service: identifying study needs
PIs uncertain about requirements & importance
Data Support Service project: visibility of MRC studies
• MRC Policy & challenges
• Data diversity
• MRC Data Support Service project
• Coordination of strategy & policies
Sharing of research data collected with public funds
• 7 UK Research Councils
• Common datasharing policy
• Also Wellcome Trust
• Archives & repositories• ESRC: Archive and Data service
• NERC & STFC: Data Centres
• Informatics• Community databases & tools
• Repositories
• E-science Infrastructure• Software tools
• Grids
Leadership, partnership, investment
Data sharing: Maximising the lifetime value of data for new knowledge and better health
“Omics” Cohorts &Trials
BioBanks
Patient groups
Demographicdata
Investment in methodology, strategic skills
& infrastructure
Connecting data for new knowledge better health
Other routinedata sets (edcucation,
environment…
NHSClinicalData
Data diversity & Common interests
• Differences across the disciplines
• Scale, nature and sensitivity of data
• Means of data production
• Cultures and practices
• Common interests
• Research quality
• Data linkage, harmonisation, re-use
• Data quality – including metadata
• Simpler, easier curation tools
• Simpler, easier transactions
• Support with the regulations
• Recognition for sharing
• Funding
MRC Data Support Service
Data Preservation is sustaining the value of our data for new knowledge and better health
• Real issue of non-digital data
• Real issues with digital data
• Without metadata, the research data have little or no value
• Selectivity: Cost, value and ethics
Your organisation’s research data policies?
Diversity: a thousand practises bloom!
No central command
Rarely marches to a single step
• MRC Policy & challenges
• Data diversity
• MRC Data Support Service project
• Coordination of strategy & policies
The Data Support Service Project
• March 2009: DSS Project “soft launch” • Consortium
• Working with MRC community• 6 pioneer Units / Programmes
• 2006: MRC Council approval in principle for a Data Support Service to support PIs maximise the lifetime value of MRC-funded research data
• 2008-2009: Scoping & procurement
The Data Support Service project aims to reduce our uncertainty
• How many studies are worth preserving?
• Nature and scale of the challenges?
• Benefits?
• Cost?
• Options?
• Engagement?
MRC Data Support Service goals
• Enabling access to and research use of population health study datasets
• Maximizing the lifetime value responsibly
• Broadening the diversity of research
• through• better visibility of available resources
• promoting clear and simple access procedures
• promoting good practice in data curation
• promoting good practice in confidentiality management
• developing & validating methods, tools & standards• Collection cleaning curation analysis preservation…
In two years, we expect to the DSS Project to deliver…
• 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• Data sharing plans for the pioneer studies
• With evidence of benefits & costs
• Evidence of cultural & practice changes• Unaware aware informed advocate
• Community engagement in standards development
• Experience that informs MRC strategy for the Support Service
Support Service Project objectives
• NOT a central repository of MRC-funded datasets
• Each MRC team / unit will remain responsible for
• Data quality
• Data security
• Decisions about collaboration & access
The catalogue
• The catalogue will contain knowledge (metadata) about the datasets and how they can be accessed
• description of the cohort and research team
• content (data fields and descriptors)
• patient populations included, periods covered
• methodology used for data collection
• methods used for data validation and cleansing
• availability of the dataset for access requests
• consent and disclosure policies governing access
• process for requesting collaboration or access
• No research data
Pioneer studies
• National Survey of Health and Development (MRC Unit for Lifelong Health and Ageing), UCL
• Avon Longitudinal Study of Parents & Children (ALSPAC), Bristol
• Whitehall Study, UCL
• MRC Social and Public Health Sciences Unit, Glasgow
• MRC Epidemiology Resource Centre, Southampton
• MRC Human Genetics Unit, Edinburgh
• [MRC Laboratories, The Gambia]
Beyond the Project
• Define and implement the Service• Informed by the DSS Project & other infrastructures
• Broaden the scope• From 6 to 36 studies?
• From cohorts to broader population health sciences?
• Develop external linkages• Interdisciplinary research: Cohort Research Facility
• Routine data: Research Capability Programme
• Infrastructure
• Alignment of the Cohort Research Facility and Data Support Service
• Relationship of these infrastructures with Repositories, archives, community databases
• Driving interdisciplinary collaboration & access
• Science-led research projects & funding
• Promoting Access
• Cross-funder good practice forum – Access Committee Chairs?
• Compare practices
• Cross-funder supra-access committee?
• Appeals & complex problems
• Improved data sharing plans
• Evaluation
• Do data sharing initiatives deliver the goods?
Policy & strategy issues
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