Using General Practice Data in Research (GP Data)

Start Date

1 July 2021

End Date

30 June 2026

Project Participants

Australian Government Department of Health Disability and Ageing, Health Consumers NSW Inc, Macquarie University, Population Health Research Network, University of Wollongong

Status: Completed

Tags: data governance, data linkage, data sharing, general practice, health data, primary care, public trust, secondary use of health data, social license

Opportunity

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, this information is used to a limited degree. Concerns amongst GPs and patients about the protection of privacy and the risk of data misuse are frequently cited as reasons for the lack of 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.

Project Objectives

The overall objective of this project has been 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, the project examined 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. The findings then fed into the design of a best practice framework for the use of general practice data for research purposes in Australia, and consumer representative training.

We completed extensive engagement with community members, general practitioners, policy makers, regulators, ethics committees and consumer representatives. Outputs included a best-practice framework, multiple peer-reviewed publications, policy recommendations, a national stakeholder roundtable and co-designed consumer training to support meaningful public participation in data governance.

This project has laid the groundwork for a national approach to the secondary use of general practice data that will build and support trust and confidence among stakeholders, including general practitioners and the community. The project’s findings are designed to inform future legislative reform, governance structures, ethics review processes, and health data policies. By developing a framework that supports public trust and increases consumer involvement in governance structures and decision-making, the project outcomes have the potential to support legal, ethical, and support responsible data sharing and use that will lead to significant advances in health research, the provision of health services, service and the development of evidence-based health policy.

Integrity, Excellence,
Teamwork and Authenticity

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