A guide to the legislative and governance structure to refer to when accessing datasets from publicly funded research. This page also contains a single page summary to the guide and a consumer guide.
Table of contents
The Principles for Accessing and Using Publicly Funded Data for Health Research (the Principles) provide information and guidance for researchers and organisations when researchers seek permission from organisations to access and use data for their research.
Development of the Principles
The Principles have been developed by NHMRC on the advice of researchers, consumer representatives and organisations that hold data. They represent a common view about sharing the data, and the roles and responsibilities of all parties.
Why the Principles are needed
There are many different policies, legislation, organisational processes and researcher practices guiding the access to data for research purposes. What is missing is a common set of principles that all parties agree is important.
Laws protecting individual privacy and the processes of ethics committees maximise the ethical use of data during research. Organisations and agencies strive to have effective data governance processes and systems in place as they handle requests from researchers for data. These can vary considerably in different states and territories, and in different sectors (for example health, education, justice, welfare). Organisations can also have a different view or perspectives about sharing the data compared to researchers, and so Australians may be prevented from realising the research opportunities and benefits access to data can create.
Because of this, the Principles aim to:
- ensure that all parties have a common set of priorities about the use of data
- encourage communication between researchers and data custodians so they can better understand each other’s roles and responsibilities, and
- make sure the use of data is optimised for the benefit of all Australians.
Other agencies that support the Principles
The Principles have the support of the Consumer Health Forum of Australia, the Australian Government Department of Health, the Australian Institute of Health and Welfare, the Australian Bureau of Statistics, the Australian Government Department of Human Services, the Australian Electoral Commission, the Australian Institute of Aboriginal and Torres Strait Islander Studies and Universities Australia.
National, state and territory legislation relevant to the Principles
The Principles importantly refer to the legislation that covers issues such as privacy and freedom of information, and policies or good practice guides on data sharing, using health information and open access. Australian states and territories have separate and differing legislations on topics related to data access and use. Relevant state or territory links (below) provide specific information about accessing data and legislation relevant for each health department:
- NSW Ministry of Health
- Queensland Health
- Victorian Department of Health and Human Services
- Tasmania Department of Health and Human Services
- South Australia Health
- Western Australia Health
- Northern Territory Health Department
- ACT Health
For any queries please contact NHMRC at firstname.lastname@example.org