Concept of Operations: Relating to the introduction of a Personally Controlled Electronic Health Record System
5.2.3 Research and other permissable usesIt is proposed that particular secondary uses and disclosures of personal information permitted under the Privacy Act will continue to be allowed in the PCEHR System.
Those secondary uses and disclosures include:
- Use or disclosure authorised or required by or under law (including public health and child welfare reporting obligations in state and territory legislation). It is proposed that the ability to subpoena information from the PCEHR System will be limited to specific circumstances.
- Use or disclosure to prevent or lessen a serious threat to an individual’s life, health or safety or a serious threat to public health or safety.
- Research in line with research uses permitted under the national privacy principles.
In the case of research, the existing design would support participants in Clinical Trials providing access to their PCEHR to researchers, if they chose to. If the clinical trial is operated by a healthcare organisation, then the PCEHR can be accessed as per current arrangements for healthcare organisations. Trials operated by other parties may require the use of the nominated representative.
In the case of wider public health research, generally using de-identified data, the PCEHR system has been designed to enable this research to be conducted as part of later releases (see Section 4.6 which covers extraction of de-identified data via the report service). Later releases would need to establish appropriate governance frameworks to enable de-identified research activity.
When the functionality and research frameworks are established, the PCEHR System would only use or disclose information for health research purposes in accordance with existing law, forthcoming PCEHR legislation, governance and any policies and procedures of the PCEHR Operator. There would be strong emphasis on:
- The use of information, which does not identify any person, where possible.
- The role of consent of any person who is identified in the data.
- Supporting research with a proper ethical basis and public benefit.
One area where the PCEHR System may possibly depart from existing secondary uses and disclosures is where state or territory legislation imposes reporting or secrecy obligations that are inconsistent with the operation of the PCEHR system. In those cases, there may be some need for legislation to address the interaction of the state and territory law, and the operation of the PCEHR System. The aim is to disturb existing state and territory obligations as little as possible.