Objective: To determine attitudes towards doctors and hospitals as data custodians, and patients' experiences of unauthorised information releases from health services.
Design: Analysis of data from a cross-sectional, descriptive household survey (October-November 1999).
Setting: South Australian community.
Participants: 3,013 randomly selected residents over 15 years of age.
Main outcome measures: Level of confidence in doctors and hospitals as data custodians, and patient-reported experience of unauthorised information releases by health services.
Results: 288 survey participants (9.6%) were not confident that healthcare providers keep and use information responsibly, 108 (3.6%) reported that healthcare providers had released information without their consent (although at least 48 of these disclosures were legally defensible), and 57 (1.9%) reported harm arising from unauthorised disclosures by health services. Projecting these findings to the South Australian population, over 2,000 people experienced harm arising from unauthorised information release in 1999. However, in the same period, there were fewer than 20 formal complaints to major agencies (eg, Ombudsman, Medical Board).
Conclusions: Healthcare providers have lost the confidence of a minority of patients. For some, this mistrust is based on experience of unauthorised information release. Some disclosures are mandated by legislation. These findings provide baseline performance measures for benchmarking trends in patient confidence and prevalence of unauthorised release of patient information.