Collecting and using Aboriginal health information in New South Wales

Objective: To describe the development of guidelines for the management of Aboriginal health information in NSW. The purpose of the guidelines is to promote the ethical management of Aboriginal health information, with appropriate consideration for cultural factors. Methods: The guidelines were developed collaboratively by the NSW Aboriginal Health Partnership, which comprises NSW Health (the central administrative office, named NSW Department of Health, and the Area Health Services) and the NSW Aboriginal Health and Medical Research Council (AHMRC), the peak body representing member Aboriginal Community Controlled Health Services in NSW. A lengthy and comprehensive consultation process enabled a wide range of interested groups to have input into the guidelines. Results The project culminated in the production of the NSW Aboriginal Health information Guidelines, covering the collection, ownership, storage, security, release, usage, interpretation and reporting of information, as well as issues of privacy and confidentiality The Guidelines formed the basis of a formal Memorandum of Understanding, signed by the NSW Minister for Health, NSW Department of Health and the AHMRC, on 24 August 1998. Conclusions and Implications: The Guidelines make an important contribution to meeting a need for protocols on the collection, ownership and use of Aboriginal health information. Their production reflects successful collaboration between government and Aboriginal Community Controlled Health Services in NSW. Future reviews of the Guidelines will ensure their effectiveness and consistency with Aboriginal community principles.