The Principles for Accessing and Using Publicly Funded Data for Health Research (the Principles) are a guide for those requesting access to publicly funded datasets for the purposes of research, and for the organisations that hold them.
The Principles should be read in conjunction with the National Statement on Ethical Conduct in Human Research (2007), the Australian Code for the Responsible Conduct of Research and other policies and legislations.
Read a summary of the Principles below, or access the Full Principles online.
b. The value of data lies in its use. Use of datasets for research should be promoted, encouraged and maximised for public benefit, while also protecting privacy and confidentiality.
c. To maximise public benefit, health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement.
d. Public trust in the use of personal data for research should not be compromised.
Custodians of publicly funded health and health-related datasets should:
a. Encourage, support and facilitate access to data, including for data linkage, to promote high quality and sustainable research outcomes.
b. Ensure that data releases for research purposes protect the privacy of individuals and maintain confidentiality of their data in accordance with relevant legislation, policies and ethics guidelines.
c. Specify the conditions of data access and licensing, and provide a description of their data holdings to assist researchers to determine whether the data are fit-for-purpose.
d. Provide researchers, whose applications for access have met the required criteria and have been approved, with timely access to data for research on a ‘best endeavours’ basis.
e. Seek wherever possible to harmonise access, approval and data supply processes with other data custodians responsible for similar or related data sets.
f. Be transparent and proactive about:
Researchers using publicly funded health and health-related datasets should:
a. Consult with data custodians early in the research project development: be clear about their research intent, and check that the data are appropriate for the intended research purpose.
b. Comply with the National Statement on Ethical Conduct in Human Research (2007) ; and be aware of relevant state, territory and Commonwealth legislation relating to privacy and use of data.
c. Ensure that the identity of individuals is not disclosed to unauthorised persons, that data are kept secure and only used for the purpose for which their use is approved.
d. Meet obligations under legislation and in signed agreements with data custodians for the use of data; including restrictions imposed on the use, sharing and destruction of data; and any requirements for review of research findings and reports.
e. Publicly acknowledge in their publications, reports and presentations the data source, and support given by data custodians.
f. Be transparent and proactive about:
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