Draft Concept of Operations Feedback Analysis Report
4.11 Research and other approved uses
| Total submissions containing this theme | Breakdown of submissions containing this theme by group |
|---|---|
| 4.5% |  |
4.11.1 Description
A number of the submissions strongly supported the use of data from the PCEHR System for research, audit, community awareness and the identification of systemic issues within the healthcare landscape. However, there were a number of submissions that expressed concerns about the potential secondary use of the data that is collected.4.11.2 Key points
- Privacy of individuals
- Concerns were expressed that the use of data for research or audit purposes may breach the privacy of consumers
- Questions were raised regarding the regulation of any data used for research purposes
- Potential use
- Questions were raised regarding the Commonwealth Government’s intent to use the PCEHR System’s data for other purposes
- A number of submissions highlighted the potential benefits that could be obtained from having a large amount of healthcare data available. Examples given included the support of clinical research, clinical registries and public health planning
- Concerns were expressed that data from the PCEHR might not be accurate and consistent enough to use for research or audit purposes
- It was noted that there are potential benefits for the use of PCEHR System data in relation to immediate and extended family members, in particular, with respect to providing an awareness of genetic diseases
4.11.3 PCEHR program position
The ConOps document has been amended to:- Align with the results of public consultation to the Legislation Issues Paper around applicable legislation and privacy laws.
- Provide more details about the types of use of data for research and other purposes that the PCEHR System will support (e.g. participants in clinical trials may provide access of their PCEHR to researchers if they so choose and wider public health research using de-identified data).
- Clarify that the PCEHR System will support uses of data for research and other purposes that are currently permissible under the Privacy Act. This ensures that any potential research or secondary use of data conforms to existing laws and legislation.
- Note that some reporting capability (e.g. relating to the extraction and use of large scale de-identified data for research purposes) will be delivered in later releases of the PCEHR System. However, the initial PCEHR System design will take this capability into consideration to allow for any future improvements.
- Clarify that upon establishment of functionality and research frameworks, the PCEHR System would only use or disclose information for health research purposes in accordance with existing law, the forthcoming PCEHR System legislation, overarching governance, and complemented by policies and procedures of the PCEHR Operator.
These amendments addressed research concerns regarding: limiting the identification of individuals, the role of consent of persons’ identified, and supporting research ethically and for public benefit. The ConOps has been informed by the Legislation Issues Paper.
DoHA is currently considering the legislation issues based on the outcomes of the public consultation process; research and other approved uses of data will be considered from a legal perspective as part of this process. DoHA will also develop a policy framework concerning the release of information from the PCEHR System for research and other approved uses.
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