MRC data sharing

Phase I of the Project involved conducting a broad but general survey and convening a working group of interested experts. Phase II of the Project incorporated both wider and more narrowly focused work. On the one hand, a series of site visits were undertaken in order to collect in-depth case study information on the conduct of population-based data creation and management; and on the other hand, the “Horizons” workshop was convened to locate the current inquiry in the broader context of developments in e-science more generally.

In Phase II case studies were conducted to assess existing DAA provision within MRC-funded units and projects. The work sought to identify the cultural issues involved, contrasts with other research data organisations, services, and funding bodies internationally for existing policies and practices, and presented a number of different possible models for DAA provision for the MRC.

A small team visited seven study sites and examined eighteen population-based datasets. Semi-structured interviews were conducted with principal investigators, project managers, laboratory managers, statisticians, geneticists and data managers, attempting to uncover the current situation “on the ground” with regard to data management, preservation, and access. Researchers views were sought on the philosophical and practical issues involved in developing a data archiving and access policy, and what services they themselves might like to see supported.

The eighteen studies investigated revealed a lot of variation in study types, methods, data types, and formats. There was also great variation in current data management and data sharing provision, ranging from excellent to less than ideal. The attitudes of researchers towards data sharing were also variable, and although there was widespread support for data sharing on a conceptual level, in many cases researchers were concerned about secondary usage being carried out without appropriate control over the legal, intellectual and analytical frameworks.

To augment the case studies, additional investigations were undertaken: an analysis of current consent arrangements and their impact on data sharing; research on existing standards for metadata and interoperability in the medical and health-related data areas; an examinination of data sharing policies from organisations in the UK, the USA, and internationally.

Archive contribution

Staff from the UK Data Archive worked closely with the Medical Research Council in all aspects of the project.

Principal Investigators: Louise Corti and Melanie Wright
Funder: MRC
Dates: 2002 - 2003
Contact: Louise Corti