Protecting Information Rights – Advancing Information Policy

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Can my health information, when held by a private sector organisation, be used without my consent for research, the collection and analysis of statistics or for health service management?

Yes it can, but only in limited circumstances.

Section 95A of the Privacy Act 1988 allows the National Health and Medical Research Council (NHMRC) to issue Guidelines approved under Section 95A of the Privacy Act 1988. In accordance with these guidelines, requests can be considered for the use of your personal information (without consent) for research, statistics activities or for health service management in the private sector. The guidelines, which must be approved by the Privacy Commissioner, require that a Human Research Ethics Committee (HREC) must first approve such proposals. These protections are similar to those in relation to the disclosure of personal information by Commonwealth government agencies for medical research, which have been in place since the Privacy Act was passed in 1988.

However, before that the researcher must consider whether it is practical to seek your consent to use your health information for the proposed activity. If this is not possible, the researcher must consider whether they can use de-identified information, this is information from which you cannot be identified. If neither step is possible, then the researcher may decide to seek approval to use your information without your consent.

The guidelines set out the framework for a HREC to use when deciding whether to allow these types of activities to proceed. As part of its deliberations, the HREC must determine if the public interest in the research, statistics or health service management activity substantially outweighs the public interest in privacy, before the proposal can be approved.

For more advice on research and health information, see Information Sheet 9 � 2001 Handling Health Information for Research and Management.