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December 2008
MRC Data Support Services (DSS)
Chris Morris
13th February 2009Sharing Research Data: Pioneers, Policies and Protocols
The seventh cat
MRC Data Support Services
Every year the UK Medical Research Council (MRC) invests £500 million of public money
into research, the primary output of which is data.
2006 MRC Data Sharing & Preservation Initiative
• “Responsible sharing of data allows further high-quality, ethical research.
• This includes the testing of new hypotheses and analyses, linkage and pooling of datasets, and validation of research findings.
• These activities not only reduce duplication of data creation but also enhance the long-term scientific value of existing data.
• Establishing these capabilities will benefit the wider research community and generate new opportunities for scientific advancement towards the longer-term goal of improving human health. ”
2006 MRC Data Sharing & Preservation Initiative
“The MRC’s Data Sharing & Preservation Initiative aims to establish five capabilities:
1. Discovery of research datasets 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. ”
Stakeholders
• Funders – MRC and others
• Users of population health data
• Data Creators
• Data Custodians and IT Managers
• The Public – patients and study participants
Issues: Funders’ perspective
• Often research data is rarely used outside the originator’s institution.
• Data may never be fully analysed by the researchers who generate it. - A costly and scientifically valuable resource is only partially exploited.
• Researchers are often not good at retaining or managing data beyond the life time of funded projects.
• Uncertainty about the current and foreseeable demand from researchers for access to datasets.
• Uncertainty about the costs of storage and active data management.
Issues: Data Users’ perspective
• Researchers need to access data from all over the world.• Most researchers are willing to share data; but they
usually do so through informal peer exchange networks.
• It can be a challenge to find out what is available.
• Datasets are often not created with a view to sharing beyond the initial collaborators.• No policies established for approving access.• Inadequate meta data. - Data are often unstructured
and inaccessible to others.• No compliance with data standards.• Lack of quality measures (provenance, clean-ness).
Issues: Data Creators’ perspective
• Strong personal issues of data ownership, intellectual investment and reputation.• Population datasets represent a substantial
investment in time and effort before analyses can begin.
• Risk of misguided or unethical re-use.
• No reward for sharing. • Making own data available for re-use is not yet a self-
evident part of scientific recognition.
• Protecting study participants.• Long-term studies need to retain subjects.
Issues: Data Custodians’ perspective
• The volume and complexity of data are increasing rapidly, and most data are stored locally.
• Managing the• Cataloguing and Metadata,• Security and Access Control, • Archiving and Verification of datasets,• Approved data distribution,
- is time-consuming and costly.• Data management is still an under-valued profession. - Skills
for the management and curation of research data are under-developed.
• Study planning often fails to adequately consider the implications for long-term data archiving, curation or preservation needs. For example, determining what is to be kept and for how long.
Issues: Public and Patients’ perspective
• Confidentiality.• Consent.• Effective use of tax-payers’ money.• New discoveries and well-evidenced health
interventions.
The MRC Data Support Service
• Engaging with the research community
• Options appraisal and pilot studies with specific MRC data sets to improve curation and access;
• Identification and documentation of best practice;
• Business plan for the incorporation of further specific data sets into the DSS;
• Identify priorities for local action.
Data UsersData Users
DataCustodian
DataCustodian
DataCustodian
DataCustodian
Dat
a D
isco
very
Gat
eway Data
Data
BestPractice
ACCESS TO GUIDANCE
BETTER CURATION AND PRESERVATION
DataCatalogue
SEARCH AND DISCOVER
REQUEST FOR ACCESS
APPROVED RELEASE
REQUEST FOR ACCESS
APPROVED RELEASE
2009-2011 MRC Data Support Service
The first 2 years will focus on:
• Enabling researchers to find valuable MRC datasets. • Provide an intelligent gateway to online guidance.
• Make it easier for scientists and data managers to preserve and share data responsibly.
• Inform the MRC’s strategy for sustaining the value of major research data assets.
It’s just the Beginning.
Making it Happen
The MRC is working with a team from the Science and Technology Facilities Council (STFC) who were chosen as the partner for this project after a public procurement and formal evaluation process.
The STFC is leading a collaboration that involves researchers from University College London and Oxford University. Each partner brings a particular expertise to the project.
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