66.1 Databases and registers of health information are established for a number of reasons in both the health services and the health and medical research contexts. The National Health Information Management Group has defined a ‘health register’ as follows:

For the purposes of these guidelines, a health register is a collection of records containing data about aspects of the health of individual persons. The subjects will typically be patients or clients of a health service or health program, from which the data are collected. Health registers are characterised by being:

personal data each record represents a person, not a set of aggregated data;

identified each record in the register is identified to a particular subject;

population-based the register aims to include a record of all persons within its defined scope; populations may be broadly or narrowly defined, eg Australia wide, regionally based or clients of a local service; and

ongoing collection is not restricted to a particular period of time.[1]

66.2 Dr Roger Magnusson defines health registers as ‘discrete repositories of information separate from clinical records’ but notes that the distinction between clinical records and data registers is likely to diminish as health records are gradually incorporated into databases.[2] The establishment and management of electronic health information systems and shared electronic health records in the health services context are discussed in Chapter 61. This chapter will focus on the establishment and use of health information databases and registers in the research context.

[1] Australian Institute of Health and Welfare, Minimum Guidelines for Health Registers for Statistical and Research Purposes (2001), 2.

[2] R Magnusson, ‘Data Linkage, Health Research and Privacy: Regulating Data Flows in Australia’s Health Information System’ (2002) 24 Sydney Law Review 5, 15.