Managing and sharing research data: focus on consent, confidentiality and disclosure

This workshop, which took place on 2 December at LSE Rosebery Hall, London, covered key issues on data management and sharing as applied to socio-economic research involving people as participants. It provided both theoretical information and practical exercises and discussions focusing on:

• dealing with confidential research information and personal data
• developing agreements for obtaining informed consent from participants
• appropriate anonymisation techniques to enable re-use and sharing of research data

The session went very well due to several contributing factors. Participants were asked to provide information about their current projects and several obliged – this was usefully incorporated into the break out sessions. As a group, the participants had a wide range of experience in different research and project settings. About one-third were Research Ethics Committee (REC) members or had REC experience. Others had comparable levels of experience and were able to contribute in depth to the break out sessions.

It is clear that questions and issues are becoming more complex relative to the first times this workshop was offered. However, the UKDA Manage and Share Data web pages provided useful information for responding even to these more challenging questions.

The following suggestions were made for future workshops:

• How much do UKDA data get used?
• To what extent does the UKDA accept data collected by non-UK researchers, or data collected about other countries?
• Consent examples need to be reviewed – others may be more useful