Privacy and Confidentiality
All information about you or your child collected for the STARSS Study will be treated with the strictest confidence and only the nominated STARSS researchers will have access to study data.
The privacy of patients' enrolment information is ensured by a strict protocol of data collection enforced by the GRHANITE softward. Upon enrolment in the study, a unique ID will be generated for each participant from the data extraction process carried out by GRHANITE.
The study data (which is extracted from GRHANITE) will be transferred to and kept on a dedicated and secure server located at the University of Adelaide. All data transferred is encrypted and authenticated access to this data on the University server is built-in to only allow nominated STARSS persons to access it.
No identifiable information about you or your child will be published in scientific journals, articles or manuscripts. Participants' information will only be released where there is a legal requirement for STARSS to disclose it.
The STARSS Study complies with three privacy acts; Section 141 of the Health Services Act 1988, Information Privacy Act 2000 and the Health Records Act 2001.
Section 141 of the Health Services Act 1988 prohibits health services (for example, general practitioners and hospitals) from disclosing personal and health information which could identify a current or past patient/client; information which was obtained through visiting such a health service, unless permitted by other law or the patient has consented.
The Information Privacy Act 2000 aims to protect and manage personal information that the Government collects and stores. It regulates the responsible and appropriate exchange of information in the community and establishes standards through 10 Information Privacy Principles.
The Health Records Act 2001 aims to protect the privacy of personal and health information. It enforces the responsible handling of this information in public and private organisations and establishes standards through 11 Health Privacy Principals. These principals regulate information collection, storage, access, transmission, disclosure, use and disposal of personal and health information. This Act also gives an individual the right to access their personal or health information and request amendments if the information is inaccurate.
For more information about the Information Privacy Act 2000 and the Health Records Act 2001 and the associated Information/Health Privacy Principles, visit the Health website.