December 2008 MRC Data Support Services (DSS) Chris Morris 13 th February 2009 Sharing 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 Users Data Custodian Data Custodian Data Custodian Data Custodian Data Discovery Gateway Data Best Practice ACCESS TO GUIDANCE BETTER CURATION AND PRESERVATION Data Catalogue SEARCH AND DISCOVER REQUEST FOR ACCESS APPROVED RELEASE REQUEST FOR ACCESS APPROVED RELEASE

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.