Bower Carol, McKenzie Anne, Watson Linda, Charles Adrian
J Registry Manag. 2013 Spring;40(1):9-13.
The Western Australian Birth Defects Registry and the Western Australian Cerebral Palsy Register used multiple sources of voluntary notification without consent and have a high level of case ascertainment, but there were concerns over privacy and a call for statutory notification.
To seek consumer consensus on whether notification to the registers should be statutory or only with consent.
Two facilitated workshops for consumer and community members of groups representing people with birth defects, cerebral palsy and disability, and the Western Australian Health Consumers' Council.
Parent groups and the Health Consumers' Council were unanimous in their support for statutory notification, with 3 conditions: that comprehensive and open information be provided to consumer groups and community; that consumers have input into the development of statutory notification; and that an opt-out clause be included. A Consumer Reference Group was established. They decided on a name for the new register (Western Australian Register of Developmental Anomalies), developed an opt-out clause and reviewed drafts of the regulations for statutory notification. The regulations came into effect in January 2011.
Consumers were key to achieving statutory notification. We encourage others to engage with their consumers and community in equal partnership for mutual benefit.
西澳大利亚出生缺陷登记处和西澳大利亚脑瘫登记处使用了多种未经同意的自愿通报来源，病例确诊率很高，但存在隐私方面的担忧，并有人呼吁进行法定通报。
就是否应向登记处进行法定通报或仅在征得同意的情况下进行通报征求消费者的共识。
为代表出生缺陷、脑瘫和残疾人群体的消费者和社区成员以及西澳大利亚健康消费者理事会举办了两场促进性研讨会。
家长团体和健康消费者理事会一致支持法定通报，但有三个条件：向消费者团体和社区提供全面且公开的信息；消费者参与法定通报的制定过程；纳入退出条款。成立了一个消费者参考小组。他们为新登记处确定了名称（西澳大利亚发育异常登记处），制定了退出条款，并审查了法定通报的法规草案。这些法规于2011年1月生效。
消费者是实现法定通报的关键。我们鼓励其他机构与他们的消费者和社区建立平等伙伴关系以实现互利。
