Can my health records be used for medical research?

A group of Australian veterans is suing the Australian government over claims the Department of Veterans’ Affairs passed their medical data on to a university for research, without their permission.

The case relates to a 20-year research program called MATES, which used veterans’ medical data. It was closed in 2024 due to privacy concerns.

This came after an earlier investigation by the Office of the Australian Information Commissioner, which found the department sent a veteran’s personal information (including name and medications) to university-based researchers, and then on to medical professionals involved in their care. This was done without their consent.

The commissioner found the department had interfered with the veteran’s privacy.

Other veterans have now launched a class action against the department for “mass and routine sharing” of their medical records over 20 years.

So, was this an outlier? Or are we all facing similar privacy threats?

Our health records aren’t just kept in our doctor’s locked filing cabinet: they’re almost always stored in electronic medical records.

Medical record information includes identifiers such as name, address, date of birth and phone number, as well as health history, medications, test and imaging results, and vaccinations.

This information held by our treating doctors is uploaded to the national My Health Record system, unless we’ve opted out.

Our personal information is also collected by government agencies, such as to process Pharmaceutical Benefits Scheme and Medicare claims. Agencies must follow rules established by the Information Commissioner when they handle this information.

Researchers can be interested in our health data for research and statistical purposes. Having access to large data collections enables researchers to uncover vital new connections and insights.

A good example is the GenV study, based in Victoria. This research uses the health and educational data of around 120,000 children and parents who have given consent. It also gathers extra information from participants, using surveys and physical samples. The dataset is expected to yield insights that could address obesity, improve vaccine safety, prevent and treat asthma, and answer other major health questions.