Objectives: The current policies of the governments of Australia and New Zealand encourage the use of electronic information systems to exchange patient information between various stakeholders. This research investigated (1) the attitudes of patients toward sharing their medical information and (2) whether patients considered themselves to be well-informed about the uses that are made of their information.
Methods: A questionnaire survey of adult primary-care patients was conducted in five clinics within a medium sized New Zealand city. Outcome measures were the proportions of respondents willing to share different categories of their information with different classes of recipients. Patients' evaluations of their knowledge about the uses made of their information were also collected.
Results: Over 200 responses were collected from five clinics. Respondents' attitudes toward sharing their information were found to be influenced by three factors. (1) Identity of recipient: whilst respondents were generally willing to have their information shared between health professionals, they were increasingly unwilling for it to be distributed to other stakeholders, such as administrators, researchers or other government departments. (2) Level of anonymity: respondents were more prepared to share anonymous information. (3) Type of information: respondents were increasingly unwilling to share their information as it takes on a more personal nature. Respondents were also found to be very poorly informed about the use of their information, 90% of respondents indicated that they had either incomplete or no knowledge of how their information was shared and 79% had no knowledge of the uses of their National Health Index (NHI) number. The findings also indicate that respondents would prefer to be consulted about the distribution of their information.
Conclusions: These findings indicate that many respondents were unwilling to have their personal information distributed other than for purposes of clinical care and a sizeable proportion of the respondents would like to be consulted before their information is released. The high level of interest and concern that this research revealed among respondents, suggests that more attention should be directed towards ensuring that patients are fully informed about current information sharing practices. The findings also imply that the design and development of future systems should also incorporate sophisticated and flexible access control policies that can be adapted to meet the preferences of individual patients.