Draft Concept of Operations Feedback Analysis Report
4.7 Policy and legislation
containing this theme
|Breakdown of submissions containing this theme by group|
4.7.1 DescriptionA number of questions were received seeking details of the policies and legislation relating to the PCEHR System. Some submissions noted that further consideration will be required concerning the level of detail of policies, standards and legislation. A number of recommendations were proposed, as well as questions raised to gain clarification of anticipated issues.
4.7.2 Key points1. Policy and standards
- Requests for additional detail were received concerning the specific standards and policies relating to key health information and summaries
- Questions were received concerning the timeframe for the policy development as well as the specific details of the policies that will be used
- Requests were received for additional details of the legislation applying to: parental access; family circumstances; and carer and palliative care
- A number of submissions requested additional detail regarding the authorisation of guardians and their capacity to act on behalf of an individual
- Questions were raised about the legislative requirements that will apply to the disclosure of sensitive information
4.7.3 PCEHR program positionBased on the feedback received during the public consultation process the following changes have been applied to the ConOps:
ConOps Realignment with the Legislation Issues Paper – The new version of the ConOps has been realigned with the Legislation Issues Paper and addresses some issues raised during the ConOps consultation process. Key updates include realignment around:
- The description of how minors will be supported:
- The ConOps recognises that individuals aged 18 or older have a full legal capacity to make decisions regarding their health information. However, the PCEHR System will allow children under 18 years old to have a PCEHR through Authorised Representative arrangements. The legislation will take into consideration the range of circumstances relating to the capacity of individuals under 18 to take control of their own record.
- Authorised / Nominated representatives:
- Access to health information may be a critical contribution to an individual’s ability to provide care to another person. In addition to Authorised and Nominated Representatives there will be consideration of support for informal caring relationships whereby a Nominated Representative would be permitted to view information in a PCEHR.
- Support for pseudonyms:
- The PCEHR will provide a mechanism for persons who, for whatever reasons, require their healthcare information stored under a pseudonym. To obtain a pseudonymous PCEHR, processes under the HI Service exist and these will be leveraged by the PCEHR System, but would not compromise the individual’s true identify, or be linked in any way to a PCEHR under the consumers true name (if they have created one).
- Handling of complaints:
- Individuals who are unhappy with the way their personal information is handled by the PCEHR System operator, a repository operator or a portal operator, will have the ability to escalate their complaint to the Australian Information Commissioner if they are not satisfied with the response they receive from the operator. Similarly, individuals will be able to escalate complaints about privacy matters relating to any healthcare providers who access health information through the PCEHR System to the Australian Information Commissioner or other relevant regulators.
A summary of the proposed legislation measures has also been included as part of the ConOps. Additional details about the policies and legislation relating to the PCEHR System can be found in the Legislation Issues Paper.