Authors:
Bower C, McKenzie A, Watson L, Charles A
Authors notes:
Journal of registry management. 2013;40(1):9-13
Keywords:
Cerebral Palsy, epidemiology, Congenital Abnormalities, Consumer Satisfaction, Cooperative Behavior, Humans, Mandatory Reporting, Registries
Abstract:
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.
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.