Public confidence in the secondary use of general practice data for research
The challenge:
This project will aim to make better use of Australia’s general practice data to benefit healthcare and research. Currently, obstacles include technical issues, legal barriers, and a lack of trust among doctors and patients.
General practice data are an important resource for researchers, policymakers and planners. In recent years, initiatives to harness “the largest and most comprehensive electronic database” on the health of the Australian population have exploded. There are now over 100 primary care datasets available in Australia.
However, these datasets are not being used to their full potential. Alongside technical reasons related to poor data quality and the lack of standardisation of and interoperability between clinical software tools, “fear, reticence and lack of trust” amongst GPs and patients is the most frequently cited reason. In addition, legal and policy frameworks in Australia are not well suited to support the use of general practice data for research.
The approach:
In this project, we will use co-design and deliberative approaches, bringing together the public, GPs, policymakers and regulators, to design a best practice framework for the use of general practice data for research purposes.
The outcome will be policies, practices and regulatory guidance to enhance the social, ethical and legal acceptability of the use of general practice data for research.
Our collaborators:
- Population Health Research Network (PHRN) (Project Lead)
- Digital Health CRC
- University of Wollongong
- Macquarie University
- Health Consumers NSW
- Department of Health and Aged Care
Status:
Ongoing