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.

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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.