Data for Decisions aims to make better use of existing primary care data to improve knowledge, medical education, healthcare policy and the way medical care is delivered, and so ultimately improve the health of Australians.
The ‘secondary’ use of de-identified medical records is widely recognised to have the potential to improve public health. Individual patient records are important to doctors and individuals, but when de-identified (to maintain anonymity and patient privacy) and combined with many thousands of other records, a powerful research tool is created with the potential to generate new knowledge to improve health care.
Data for Decisions, incorporating the Patron program of research, is a University of Melbourne research initiative undertaken through the University’s Department of General Practice and Primary Care. With the permission of general practices or other primary care providers, we collate data from de-identified medical records and use the information for research to increase knowledge, quality improvement and improve healthcare practices. The data is stored in a University of Melbourne managed primary-care data repository called Patron. An independent Data Governance Committee made up of members of the public, GPs, practice managers, researchers and a lawyer, makes a determination on behalf of the data providers on which researchers / which research projects can access the data.
In some instances, the primary care providers agree to provide their de-identified data to be used only for a specific research project instead of being made available to a range of projects.
The first practices consented to contribute to Data for Decisions in late 2017, but the program had been under development since 2016, building on strong foundations of international good practice in data governance and management.
More information about this research initiative can be found throughout this website.
The diagram depicts the steps from extraction of de-identified data from general practices, to use of the data by researchers - including the ethics, governance, legal and advisory processes.