Control, trust and the sharing of health information: The limits of trust

Abstract

Clinical information about patients is increasingly being stored in electronic form and has therefore become more easily shareable. Data are collected as part of clinical care but have multiple other potential uses in relation to health system planning, audit and research. The use of clinical information for these secondary uses is controversial, and the ability to safeguard personal and sensitive data under current practices is contested. In this study, we investigate the attitudes of a representative sample of the Danish population towards transfer of clinical data from their general practice for secondary use. We specifically study: (1) patients’ trust in different types of healthcare professionals, (2) their interest in being asked about secondary use of data and (3) their willingness to dispense from a requirement of informed consent based on their trust in healthcare professionals. We find that adult Danes are positive towards research that use patient data, and they generally trust general practitioners, hospitals and researchers to treat their data confidentially. Nevertheless, they feel that they have a right to control the use of their data, only 7.3% disagreeing, and that the data belong to them, only 14.0% disagreeing. Answers to further questions about the relation between trust, information and consent show that although trust modifies the wish for information and consent, there is still a strong view that the patient should control the use of data. We find no differences between those who have frequent contact with the healthcare system and those who do not.