‘Nothing is really safe’: a focus group study on the processes of anonymizing and sharing of health data for research purposes

Abstract

The availability of anonymized data is a keystone of medical research, yet little is known about lay views towards the process of anonymization or on the way that anonymized medical data are transferred to researchers. During May and June 2009, as part of a wider consultation on methods for releasing data to researchers, three focus groups (n = 19) were conducted exploring lay attitudes towards the traditional 'warehouse' model commonly used in medical research for delivering anonymized National Health Service (NHS) data to researchers. The focus groups explored different processes such as the copying of data, use of programmers for linkage and anonymization, the transfer of data and governance. The recognition of the positive aspects of medical research and desire to support it formed the context for discussions. Nonetheless, individuals varied in their attitudes to the use of anonymized data extracts for research from their health records (without consent); although some appeared positive wanted to be asked to consent for this use. Furthermore, participants were acutely aware of security breaches of NHS information nevertheless, they continued to display a high level of trust in NHS staff. Participants were concerned about the practicalities of the warehouse model and relied on their own life experiences to make sense of the model (using analogies with 'banks' or 'libraries'). The general attitude towards the processes underlying the warehouse model might best be captured by the term 'ambivalence'. This research (1) offers unique insights into views of anonymization of health data extracts, how it is undertaken and data are transferred and (2) adds to an increasing body of work that demonstrates that a minority of individuals are concerned about consent, even when data are anonymized although (3) those concerned about anonymization do not necessarily seek resolution through gaining consent.