Data for Decisions is underpinned by strong ethical principles, transparency, and world class data governance and security procedures.
Researchers who wish to use the de-identified data held within the Patron primary care data repository must first go through a rigorous application process that includes satisfying the independent Data for Decisions Data Governance Committee, and an ethics committee registered with the Australian National Health and Medical Research Council.
Data Governance Committee
The job of the independent Data Governance Committee is to provide advice and oversight to make sure that the program of research is transparent and ethical, and the research, researchers and data technical team comply with all necessary legal and regulatory requirements.
Link to Patron Data Governance Framework pdf (under construction)
Ethical and legal obligations
The University of Melbourne Human Research Ethics Committee has granted the Data for Decisions program a waiver of patient consent, consistent with the National Health and Medical Research Council’s guidelines. In part this reflects the lengths taken by the data extraction software developers to protect patient identity. The waiver of patient consent reflects the:
- low risk of harm arising from use of the de-identified data;
- impracticality of obtaining consent;
- risk mitigation plan that our data technicians have in place; and
- the public benefit of using the data for research.
Personally identifying information about doctors or other clinicians associated with the patient medical records is also de-identified prior to its transmission to the Patron primary care data repository. Such information can only be re-identified within the clinic where the data originated. There are ethical, legal and research related reasons why such clinic-based re-identification might occur.
When general practices participate in Data for Decisions, they sign a legal agreement with the University that clearly sets out the terms under which the data is shared.
Researchers accessing the Patron database
Researchers using data from the Patron data repository must first gain approval from an NHMRC approved ethics committee. In doing so they must carefully consider the ethical implications of their research, including its merit, the protection of participant’s privacy, and how they would address any potential risks to participants.
After the Data Governance Committee approves a researcher's application to access the data, the researcher must sign a legal agreement which clearly states the terms of data use and their responsibilities with regards to use of the data and reporting back research findings so they can be published on this website.
Concerns or complaints about the management or conduct of Data for Decisions can be directed to the Manager, Human Research Ethics, Office for Research Ethics & Integrity, the University of Melbourne, 3010. P: (03) 8344 2073 E: HumanEthicsfirstname.lastname@example.org, quoting ethics ID number 1647396.
All research utilising data from the Patron data repository must be carried out in accordance with the:
- National Statement on Ethical Conduct in Human research (2007) – Updated 2018
- Australian Code for the Responsible Conduct of Research 2007