Public attitudes towards disclosing personal and anonymous health-related data and information

Abstract

Background/Aims: Public perceptions of the acceptability of healthcare organisations, such as the NHS, sharing their data or information with other relevant entities may depend on various factors. This study aimed to fill gaps in the literature relating to this topic by investigating public perceptions of health record sharing with different entities, and how the anonymity (or lack thereof) of records and the terminology used may affect these attitudes.

Methods: A survey was distributed to 2335 members of the public in England, sampled through YouGov's online panel. Respondents were randomly sorted into four groups and given a scenario about health record sharing. The scenarios differed between groups in terms of whether records were personal (non-anonymous) or anonymous, and whether the term ‘data’ or ‘information’ was used. Respondents were asked to rate the acceptability of sharing with different entities, including health and social care providers, insurance companies and local government. Differences between responses were analysed, with significance set at P<0.01.

Results: The majority (84%) of respondents indicated that they found it either acceptable or very acceptable for the NHS to share personal data and information with hospitals and GPs. Higher levels of acceptability were observed when the term ‘information’ rather than ‘data’ was used. However, over half of respondents found it either unacceptable or very unacceptable for the NHS to share such information with pharmaceutical companies for research purposes or with councils, whether these data were personal or anonymised.

Conclusions: This study suggests that people are more willing to share personal data when they perceive there to be potential personal benefits. It also contradicts the commonly held assumption that people are more comfortable sharing records that have been anonymised. These findings could inform future public health initiatives.