Privacy issues in health care and security of statistical databases

Privacy of personal information is becoming a major problem in health care, in the light of coming implementation of electronic health record (EHR)systems. There is evidence of increasing public concern over privacy of personal health information that is to be stored in EHRs and widely used within the interconnected systems. The issues for the health care system include inadequate legislation for privacy in health care, as well as deficiency of effective technical and security measures. The work in the thesis is part of a larger project which aims to offer a comprehensive set of new techniques for protection of confidential individual's health data used for statistical purposes. The research strategy is to explore concerns about privacy in relation to legislation, attitudes to health care and technical protections in statistical databases. It comprised two different approaches: * content analysis of legal frameworks addressing protection of privacy in Australian health care, and * social research to explore privacy concerns in health care by Australians 18 years and over. This thesis presents a new multi-stage research to explore privacy concerns in health care raised by the development of EHR systems. Stage one involved 23 participants within four focus groups. Stage two was a national sample survey conducted with 700 respondents 18 years and over. The results of analysis are presented. They are compared with the results of other studies. The main findings of this thesis are: * revealing the main inadequacies in the Australian legal system for protecting privacy of health information in electronic health records; * determining characteristics of people who have concerns about the privacy of their health information; * identifying items of a health record which have to be protected and some reasons for that. The findings of the study will assist with the decision and solution for appropriate technical measures in statistical databases as well as issues of inadequacy in the existing privacy legislation. Furthermore, the work in this thesis confirmed a low awareness of public in relation to statistical use of personal health information and a low level of trust to automated systems of electronic health records which are initiated by the government. In conclusion, attitude towards privacy depends on individual's characteristics but also on existing legislation, public's awareness of this legislation,the means of resolving complaints, and awareness of technical means for privacy protection. Therefore, it is important to educate public in order for EHR system function to the full of its potential and the future innovations of information technology to strengthen health care and medical research.