This paper responds to a need identified by the National Health Information Management Group (NHIMG) for a set of guidelines on the establishment, maintenance and coordination of health registers, and on their use for health information analysis and research. It provides guidance to government and other bodies who from time to time consider proposals to auspice, fund or provide some other form of assistance towards the establishment or operation of a health register, and to the proposers themselves.
It aims to document good practice for the operation of a health register. Some material in these guidelines has been drawn from a report Health Registers – How, Why and for Whom? prepared by the Royal Australasian College of Surgeons for the Department of Health and Aged Care in December 2000.
The document does not cover all issues that need to be addressed in establishing and operating a health register. In particular, the consent of data subjects and possible linkages with other registers are not addressed. These particular issues are being considered in other forums in connection with the HealthConnect initiative and the December 2000 amendments to national privacy legislation.
The principal objective of the NHIMG is to define a set of guidelines that represent minimum standards for health registers operating at a national or State/Territory level. However, adoption of the guidelines for locally based and service-based registers is encouraged.
What is a health register?
Rationale for a health register
Good practice for health registers
- Clear justification of purpose, use and scope
- Technical specifications
- Data quality
- Auspices and support
- Security issues
- Register viability