Consumers across two consultation forums hosted by Health Issues Centre provided only highly qualified support for plans by DHHS to introduce a Clinical Information Sharing system.
Almost 150 consumers, consumer representatives and community organisation representatives participated in on-line forums to respond to the discussion paper published by DHHS. This paper framed an intention to commission draft legislation to amend parts of the Health Services Act and the Health Records Act, enabling public health services to freely aggregate and access health records across the health system.
Based on personal examples of misdiagnosis, contradictory test results and simple transcription errors, consumers expressed doubts that comprehensive records would improve the quality of record keeping without the introduction of auditing and verification standards.
Consumers also questioned whether or not the core objective of the initiative to provide comprehensive records could be met when data collection did not include private health care records, primary health records or non-allopathic treatments.
The major concerns expressed, however, related to the question of property rights and who owns the records. Overwhelmingly, consumers argued that within a framework of Patient Centred Care and Consumer Health Rights, consumers are the owners of their own health records. They therefore claimed an inalienable right to:
- Opt to participate or not;
- Determine who may access their records through informed prior consent; and
- Review, amend and potentially redact records to both ensure accuracy, and maintain privacy regarding any health matter they choose not to disclose.
The full report of these forums can be found at here. The report has been forwarded to DHHS with recommendations that plans to amend legislation be put on hold until the principles outlined in the report have been adopted as the basis for further system planning.