You are here
A female GP presses the onscreen icons

Using general practice data for research

Over 80% of Australians see their General Practitioners (GPs) each year, making the information held in general practice the most comprehensive record of the health of all Australians. However, outside of clinical care, this information is underused. Concerns amongst GPs and patients about the protection of privacy and data misuse are frequently cited as reasons for the limited use. There is also the challenge of legal and policy frameworks in Australia that are not well suited to the use of general practice data for research.

Our objective

The overall objective of this project is to answer the question ‘How can we enhance public confidence in the secondary use of general practice data for research purposes?’.

The first phase of the project investigated social and legal facilitators, barriers, and challenges to using general practice data for research. In the second phase, we are examining these ethical, legal, and social implications in more detail, using co-design and deliberative approaches, bringing together perspectives from community members, GPs, policymakers and regulators, practice managers, and Human Research Ethics Committees. Our findings will feed into the design of a best practice framework for the use of general practice data for research purposes in Australia and consumer training.

The outcome of this project will be policies, practices, and regulatory guidance to enhance the social, ethical, and legal acceptability of general practice data used for research.

Funding

This project is supported by the Population Health Research Network (PHRN), Department of Health, Disability and Ageing, Health Consumers NSW, Macquarie University, University of Wollongong and Digital Health CRC Limited (DHCRC). DHCRC is funded under the Australian Commonwealth’s Cooperative Research Centres (CRC) Program. PHRN is a capability of the Australian Government National Collaborative Research Infrastructure Strategy.

  • Phase 1: DHCRC-0105 'Sharing general practice data for research'
  • Phase 2: DHCRC-0217 'GPData2.0: Building public confidence in the secondary use of general practice data for research'

 

Our people and partners

This project is overseen and supported by an Independent Advisory Group that meets quarterly to provide high-level advice and direction on study implementation.

Terms of reference

  1. Support the planning and realisation of the project aims
  2. Ensure the project has input from key stakeholder groups and industry partners
  3. Provide the research investigators with guidance on high-level project-related issues
  4. Provide advice on issues or risks that have major implications for the project
  5. Provide advice on project scope as emergent issues require changes to be considered
  6. Provide advice on policy issues impacting on the project
  7. Provide advice on translation of project results into policy and practice
  8. Review and make recommendations on the outcomes produced at the end of the project

Members

  • Professor Nigel Stocks (University of Adelaide, GP academic and Head of the Discipline of General Practice)
  • Professor Andrew Bonney (University of Wollongong, GP academic and Roberta Williams Chair of General Practice)
  • Dr Anthony Brown (Health Consumers NSW, Chief Executive Officer)
  • Dr Merran Smith (Population Health Research Network, former Chief Executive Officer)
  • Dr Felicity Flack (Population Health Research Network, Senior Manager)
  • Dr Shahana Ferdousi (Went West Primary Health Network, Senior Manager)
  • Dr Patricia Correll (NSW Ministry of Health, LUMOS, Senior Manager)
  • Professor Justin Beilby (Torrens University, GP)
  • Dr Carolyn Adams (Macquarie University, Senior Lecturer in Law)
  • Dr Allison Clarke (Commonwealth Department of Health, Disability and Ageing, Director, External Data Partnerships and Capability Section)
  • Associate Professor Kylie Vuong (RACGP representative, University of Melbourne, GP academic)
  • Chaired by Senior Professor Annette Braunack-Mayer (University of Wollongong, Head of School of Social Sciences and Chief Investigator)

Our partners

Logo for Digital Health Co
logo for Department of Health, Disability and Ageing
logo for Health consumer NSW
Population Health Research Network logo
The Macquarie University logo includes the Macquarie Lighthouse and the Sirius Star. The most recent emblem, adopted in 2014, mixes the lighthouse symbol with a geometric red and purple design. The wordmark is arranged in two layers and two different types of black beneath the logo.

Our research

Our research with communities - using focus groups, a national survey and community juries - has shown conditional support for data sharing.

We have also found that public understanding of how general practice data are already being shared is limited.

Publications

Summary reports

Building Public Confidence in the Secondary Use of General Practice Data for Research: Community Views & Knowledge

Our interviews with GPs have indicated broad support for using general practice data for research, though many expressed concerns about patient trust, privacy, and workload, and they favoured an opt-in consent approach. We also undertook a Delphi survey with GPs with experience or interest in data sharing and these GPs preferred an opt-out approach to consent, provided strict conditions were met. Across both groups, GPs called for better support, clear governance, and restricting data use to public benefit scenarios.

Summary reports

Building Public Confidence in the Secondary Use of General Practice Data for Research: General Practitioner Views

The Privacy Act allows GPs to share data without consent under strict conditions. However, GPs are also bound by the duty of confidentiality, which restricts sharing patient data.  These two bodies of law are potentially in conflict.

Publications

Access to General Practice Data for Research in Australia: The Need for Greater Clarity in Relation to Privacy and Confidentiality

Summary report

Building Public Confidence in the Secondary Use of General Practice Data for Research: Legal, Ethical & Policy Issues

GPData2.0 Stakeholder Roundtable Conference

This roundtable will be held in March 2026 and aims to bring together key stakeholders to co-develop a best practice model for the use of general practice data for research. The overarching goal of our project is to build confidence and trust in the responsible and ethical use of general practice data for research.

The stakeholder meeting will:

  • Present and discuss our research findings
  • Identify priority areas for action, including legislative, regulatory, policy, and public engagement strategies
  • Define clear next steps for collaborative progress