Qualitative data preservation and sharing

The value of preserving and sharing data was well established. There was growing recognition that secondary data analysis facilitated the development of both new knowledge and theory. Major funding bodies such as the National Institute of Health Research (NIHR), Economic and Social Research Council (ESRC), and Medical Research Council (MRC) advocated data reuse. The collection of qualitative data was resource intensive in terms of both time and money. There were also ethical arguments about maximising the use of data that had been collected using public money.

However, there was no specific repository in the UK to house qualitative data generated through health and social care research that enabled easy identification of data for secondary analysis.

The aim of the project was to design, test, and evaluate a prototype qualitative data repository, which could serve as a central hub to facilitate the secure archiving, sharing, and re-use of data. Practical and academic resources to support use of the repository, as well as a catalogue detailing the data stored, were created and made available on the repository website. A charging structure was established to ensure the sustainability of the repository.

The project team worked with the NIHR School for Primary Care Research (SPCR), School for Public Health Research (SPHR), and School for Social Care Research (SSCR) to encourage the depositing and use of data, in preference to collecting further primary data. The repository became a single point of access for qualitative health and social care data. Data in the repository was made accessible to all researchers, subject to ethical approval.

This project was particularly important, as the COVID-19 pandemic made data collection even more challenging in health and social care settings, intensifying the need to maximise use of existing data.

The Q-DaPS project found that while there is growing support for sharing qualitative data in health and social care research, researchers often lack clear guidance and secure systems to do so. To address this, the project developed a framework for ethical and practical data sharing, tackling issues such as consent, anonymisation, and responsible reuse. A prototype repository was created to show how qualitative data could be stored and accessed securely. The team also produced practical resources to support researchers and ethics committees in navigating data sharing processes. In addition, Q-DaPS fostered collaboration between academic and industry partners, helping to build the foundations for a stronger infrastructure for qualitative data archiving and reuse.

University of Bristol

University of Southampton

Keele University

University of Oxford

University of Exeter

Aston Universtiy

AIMES (Data Management)

NIHR School for Primary Care Research