To share or not to share: Public attitudes towards disclosing personal and identifiable medical data and information

Abstract

In the summer of 2023, we surveyed 2,355 members of the public in England to gauge their opinions on the acceptability of the NHS sharing their personal versus anonymised data or information with other key entities operating within the public health system. These include hospitals, GPs, pharmacists, social care providers, health insurance companies, pharmaceutical companies for research purposes, and city or county councils. Notably, 84% of respondents indicate it is either acceptable or very acceptable of the NHS sharing personalised data and information with hospitals and GPs. In contrast, the majority of respondents (50%+) find it either unacceptable or very unacceptable of sharing such information with pharmaceutical companies for research purposes or with councils, whether it was personal or anonymised. Interestingly, higher levels of acceptability were observed when the term information was used rather than data with GPs and hospitals. Our findings extend previous understanding by suggesting that, when there are perceived potential personal benefits, people are more willing to share personal rather than anonymised health information/data. This is a new finding that has not been considered before in the discussion of patients’ health information/data sharing. We discuss the managerial implications and provide specific recommendations to the NHS, insurance companies, pharmaceutical companies, and local governments on how they could improve their communication with the general public regarding the sharing of health data and information.