Who is involved in data linkage?
There are three distinct groups involved in data linkage and access processes.
- Data Custodians - are the people who look after the data collections. Data custodians work within an organisation or agency (such as a government health department) and are responsible for the secure collection, use and disclosure of data. Data custodians collect and store personal information (eg.name, address, date of birth) and also content information (eg.health information such as diagnosis and treatment details).
- Data Linkers - are the people who create Linkage IDs which allow data to be linked within and between data collections. Data Linkers work in a Data Linkage Unit that is either within, or associated with, a government agency.
- Researchers - are the people who use the data for the purpose of analysis and research. This process is only possible after an extensive application process and approval by all relevant data custodians and a Human Research Ethics Committee (HREC).