IJPDS International Journal of Population Data Science

A new study, published in the International Journal of Population Data Science (IJPDS), has found that Australians are open to sharing their GP health records for research as long as there are strict conditions to protect privacy and ensure public benefit, transparency and community trust.

Over 80% of Australians visit a doctor each year, making general practice records a rich source of information about the nation’s health. The valuable information in these records can help improve healthcare, track disease outbreaks, and support medical research. But right now, Australia isn’t making the most of the valuable health information stored in general practice records. One big reason is concern about how personal health data are used, especially when it comes to privacy, security, and who has access to it.

A team of researchers, general practitioners and health consumers brought together two diverse groups of everyday Australians to weigh in on an important question of when and how should general practice data be used for research. Over several days 39 jurors in two juries heard from an expert witness and considered the question: Under what conditions, if any, should general practice data be used for research in Australia?

The results of the citizen jury provide interesting reading.

Jurors supported the idea of sharing general practice data for research, but only if the following conditions were met:

• Patients are informed and can opt out: Jurors preferred an “opt-out” system, where patients are automatically included unless they say no. They also wanted patients to be able to exclude certain parts of their records.
• Clear and accessible information: People should be told how their data are used, who uses it, and why.
• Data are used only for public good: Research should aim to improve health outcomes, not just benefit private companies.
• Strong data security: Jurors called for regular audits, background checks for researchers, and harsh penalties for misuse.
• Independent oversight: A new governance body should include community voices and ensure transparency.
• Costs are fairly managed: Government should fund the system, and general practitioners should be compensated for their time and effort.

This study shows that, when people are well-informed, they are more likely to support data sharing especially if they trust the system and believe it will benefit the public.

The researchers say that to earn public trust, Australia needs:

• New laws to support opt-out consent
• Stronger privacy protections
• Independent oversight
• Public education campaigns.

They also stress the importance of including voices from vulnerable communities, such as Aboriginal and Torres Strait Islander peoples, who may have different concerns based on past experiences.

Chief Investigator Professor Annette Braunack-Mayer believes “Australians are willing to share their general practice data for research—but only if it’s done right. With the right safeguards, this could be a big step forward for public health and medical research”.

This project is supported by 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.

 

Click here to read the full article

Senior Professor Annette Braunack-Mayer Head, School of Social Sciences and Professorial Fellow, Australian Centre for Health Engagement, Evidence and Values (ACHEEV), University of Wollongong

Braunack-Mayer, A., Green, H., Carolan, L., Fabrianesi, B., Adams, C., Flack, F., Brown, A., Miller, K., Hayter, C., Rhee, J., Nettel-Aguirre, A., Beilby, J. and Wright-Simon, M. (2025) “Social, ethical and legal considerations in sharing general practice records for research: Recommendations from two community juries”, International Journal of Population Data Science, 10(3). doi: 10.23889/ijpds.v10i3.2469.