MRC Data Sharing Initiative

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MRC Data Sharing Initiative
ENABLING BETTER USE OF RESEARCH DATA
NCRI INFORMATICS WORKSHOP30th November 2007

• www.mrc.ac.uk/PolicyGuidance/EthicsAndGovernance/D
  ataSharing
• allan.sudlow_at_headoffice.mrc.a.uk

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Better Use?

• Some data are unique or not readily reproducible
• Reduce duplication of effort cost of primary
  data creation or collection
• Extending data re-use through
• comparative confirmatory analysis
• testing of new alternative hypotheses, tools
  methods
• meta-analysis other linkage/pooling
• Asset management

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Asset Management

• Assume nothing lasts
• Fragility and corruptibility of storage media
• Obsolescence
• Storage media hardware to access data
• Dependence on proprietary or unsupported software
• Unsupported file formats
• Storage and Management
• Costs e.g. format migration, digitisation
• Space e.g. physical (paper), digital (server)
• Management of access and use governance
• Preservation vs. Archiving vs Curation

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MRC Data Sharing Initiative An Overview
Researchers, Funding Partners, Study Participants
other Stakeholders
CONSULTATION
DRAFT POLICY
POLICY
FORWARD STRATEGY
Supporting Research Needs Policy Implementation
INITIATIVE
2007
2005
2006
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Continued Consultation

• Wide-Scale Survey Case Studies (2001-2002)
• MRC-funded research
• Review of DSP practices views on future policy
• In-depth review of issues for population-based
  research
• Informed draft policy and implementation strategy
• Joint Data Standards Study (2005)
• Data sharing models across life sciences
  incentives, barriers, standards, tools
• Sponsors MRC, BBSRC, NERC, Wellcome Trust, JISC,
  DTI
• Data Access Project (2006)
• Survey of governance of access across large-scale
  data and material collections
• Sponsors MRC Wellcome Trust
• Research Use of Personal Data (2006)
• BMJ articles (July-August) arising from MRC
  workshops on
• Consent, Confidentiality, Risks Benefits,
  Recruitment
• Public Attitudes Awareness (2007)

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Attitudes Practices

• Attitudes different communities, awareness,
  knowledge needs
• Practices variable attention to DSP beyond needs
  of originating
• research team
• Issues data storage management, common
  standards, resourcing governance
• Ethos Awareness Challenge my data! where do
  I start?
• Quality Matters
• Secondary research
• - inappropriate or unethical associations data
  raiding devaluation
• Recognition
• - reputation personal the data resource
  intellectual investment
• Data utility
• - quality of data documentation integrity,
  provenance, metadata

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MRC Data Sharing Policy Principles

• Data creators custodians must make
  publicly-funded research data available in a
  responsible manner for further high-quality,
  ethical research
• Data providers should legitimately benefit from
  intellectual investment effort
• Prolonged exclusive use of data, when not
  justified, can hinder scientific advancement
• Researchers must propose a costed DSP plan which
  will be reviewed at the time of funding requests
  renewal
• From 1 Jan 2006 applied to all proposals part of
  MRC terms conditions, final reporting and
  evaluation
• http//tinyurl.com/29bvuz

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MRC Data Sharing Initiative Ongoing Work

• Web-based resources to support researchers
• Data Access - practical guidance on enabling
  access
• Data Tissues Toolkit - a visual guide through
  the regulatory environment
• Cohort Dataset Discovery Tool searchable
  directory of population cohort studies
• Pilot projects within population-based research
  to
• enhance data curation and access for wider
  research use
• Establishment of an MRC Data Support Service to
• - deliver practical solutions in priority areas
• - demonstrate research benefits and evaluate
  costs
• - develop a business case for the longer-term
  (5 yrs)

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MRC Data Access Principles

• Governance must balance the interests of data
  providers, users research participants
  (personal data).
• Access policies practices must be
• - transparent, equitable practicable
• - consistent with MRC data sharing policy.
• - comply with ethical regulatory requirements,
  and good
• research practice.
• Principles supported by detailed guidance on
• Dataset discovery
• Governing access and use of data
• Data sharing agreements
• Data from research involving people
• Funding data access
• http//tinyurl.com/ytb2tt

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Data and Tissues Tool Kit http//www.dt-toolkit.
ac.uk
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Cohort Support Project

• Help NSHD ALSPAC to
• Assess current prospective (meta)data assets
• Determine Requirements to
• Maintain value through time/custodianship changes
• Enable discovery wider access for informed
  re-use
• Recommend options for enhanced data preservation
  for sharing
• BRONZE SILVER GOLD
• BRONZE data are preserved for future
  custodianship
• SILVER wider visibility and access for data
  sharing re-use
• GOLD long-term ideal curation solution

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SILVER CAPABILITIES

• All Bronze Capabilities i.e. Preservation plus..
• Focus on Enabling Wider Sharing Use
• Fully-documented curation strategy
• Complete metadata documentation record
• Data catalogue index
• Standardised, easy-to-access data format
  structure
• Secondary User functions in place
• Increased Visibility - enhanced online
  information
• Data metadata in suitable release formats
• Governance of access and secondary use
• Selected data available on-line for authenticated
  research use

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Thank You
allan.sudlow_at_headoffice.mrc.ac.uk
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MRC DSS Long-Term Vision

• 1. Discovery of MRC research data along with
  metadata and other essential documentation
• 2. Managed access to, and use of, data for
  high-quality secondary research
• 3. Curation to enable informed re-use of
  preserved data
• 4. Long-term preservation of high-value
  MRC-funded datasets
• 5. Development of tools, standards and guidance
  needed to support these activities.

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MRC DSS First 2 years

• MRC Data Portal
• Intuitive web-based access to information, tools
  guidance on data curation a directory of
  MRC-funded population research datasets
• Enhancing Data Curation Practices in Research
• Working with 3 or more large-scale, MRC-funded
  population research studies to enhance discovery,
  access and use of data
• Strategic Support
• Co-ordinating efforts with key partners on
  technical governance issues around data sharing
• Business Planning
• Developing evidence-based business options for
  the sustainability of the Service

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POLICY HARMONISATION SHARED EVALUATION ALLIANCE
WITH PARTNER ORGANISATIONS
Community engagement to Inform Policy Practice
Community-led Workshops Consortia
TRANSFORMING
GOVERNANCE Policy Development Implementation
ENGAGEMENT Strengthening Connectivity
Evolving Policy Developing Guidance
Connecting with e-Science e-Health Other
Disciplines
STRATEGY Evolving Towards Long-term Aims
PROMOTION Better Practice Cultural Change
Shaping Strategy with Partner Organisations
Promoting Adoption of Good Curation Practice
Monitoring Changing Technologies Regulation
Promoting Data Curation Skills in MRC Research
Teams
MRC DATA
SUPPORT
Practical Advice Responsive to MRC Research Needs
Access to Established Archives Repositories
TRANSACTING
Evaluating Costing DSP Solutions
Contracting Professional Curation Services
DIAGNOSIS Options for Specific MRC Datasets
BROKERAGE Use of Existing Resources
Projects to Improve Data Curation Access
Developing Data Sharing Agreements Licences
DISCOVERY Enabling Access to MRC-Funded Data
COMMISIONING New solutions to meet MRC needs
Data Preservation within Intramural Support
Tools and Standards Development
ALLIANCE WITH PARTNER ORGANISATIONS COMBINING
CAPABILITIES AVOIDING DUPLICATION