{"id":928921,"date":"2026-10-15T10:04:09","date_gmt":"2026-10-15T10:04:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/928921\/"},"modified":"2026-10-15T10:04:09","modified_gmt":"2026-10-15T10:04:09","slug":"can-my-health-records-be-used-for-medical-research","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/928921\/","title":{"rendered":"Can my health records be used for medical research?"},"content":{"rendered":"

A group of Australian veterans is suing the Australian government<\/a> over claims the Department of Veterans\u2019 Affairs passed their medical data on to a university for research, without their permission.<\/p>\n

The case relates to a 20-year research program<\/a> called MATES, which used veterans\u2019 medical data. It was closed in 2024<\/a> due to privacy concerns.<\/p>\n

This came after an earlier investigation<\/a> by the Office of the Australian Information Commissioner, which found the department sent a veteran\u2019s 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.<\/p>\n

The commissioner found the department had interfered with the veteran\u2019s privacy. <\/p>\n

Other veterans have now launched a class action<\/a> against the department for \u201cmass and routine sharing\u201d of their medical records over 20 years. <\/p>\n

So, was this an outlier? Or are we all facing similar privacy threats? <\/p>\n

Who has our health information?<\/p>\n

Our health records aren\u2019t just kept in our doctor\u2019s locked filing cabinet: they\u2019re almost always stored in electronic medical records.<\/p>\n

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. <\/p>\n

This information held by our treating doctors is uploaded to the national My Health Record system, unless we\u2019ve opted out<\/a>. <\/p>\n

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

Why are researchers interested?<\/p>\n

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. <\/p>\n

A good example is the GenV study<\/a>, 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<\/a>, improve vaccine safety<\/a>, prevent and treat asthma<\/a>, and answer other major health questions. <\/p>\n

The My Health Record system has been designed to enable people\u2019s data to be used for research<\/a>, although this hasn\u2019t yet started. It\u2019s expected that a data governance board<\/a> will oversee research access to the dataset, with rules in place to protect people\u2019s data.<\/p>\n

How might researchers access our health data?<\/p>\n

Health data<\/a> is given special protection as \u201csensitive\u201d data under Australian law. This means there are limited ways researchers can obtain access to this type of data. <\/p>\n

One avenue for researchers to access and use our health data is by gaining our consent. That means we\u2019re told about how our information is proposed to be handled, and agree to it in advance. <\/p>\n

But the way \u201cconsent\u201d operates can be tricky. In the commissioner\u2019s previous investigation<\/a>, the Department of Veterans\u2019 Affairs argued it had the patient\u2019s consent for information to be sent to researchers. <\/p>\n

The Information Commissioner disagreed. It said the patient\u2019s consent only covered the department\u2019s collection of information in order to assess and manage billing claims. Consent didn\u2019t cover the additional step of sharing the person\u2019s data with researchers. <\/p>\n

There are other legal gateways researchers sometimes use when they want to obtain people\u2019s health data. <\/p>\n

One way<\/a> is if the research is \u201cdirectly related\u201d to the particular purpose the information was collected for in the first place, and the person would \u201creasonably expect\u201d that research use. <\/p>\n

For example, a cancer centre might assess outcomes from its prostate cancer patients to compare the effects of different drug regimes. <\/p>\n

Another way is if the collection or use of information is necessary for research relevant to public health or public safety, and obtaining consent is impracticable. <\/p>\n

In these circumstances though, the data is still protected by human research ethics committee oversight<\/a>, and people might be given the chance to opt-out. <\/p>\n

Finally, properly de-identified health data<\/a> might be used for research without consent, since de-identification takes it outside legal protection. <\/p>\n

However, the Information Commissioner\u2019s office emphasises the use of de-identified data is not risk-free<\/a>, and that privacy protection is still important in this context. <\/p>\n

Strengthening protections for veterans\u2019 data<\/p>\n

All of these legal requirements apply to health information held by the Department of Veterans\u2019 Affairs. <\/p>\n

The department\u2019s own research strategy<\/a> has highlighted the need for compliance with ethical requirements and the importance of maintaining trust with veterans. <\/p>\n

The department\u2019s current ethics procedures<\/a> \u2013 updated since the MATES study was paused \u2013 also requires potential research participants to be told that their existing or future entitlements will not be affected by their research involvement.<\/p>\n

Lawyers acting for the veterans in the class action will seek compensation for past breaches, with a court date yet to be set.<\/p>\n

Having a say in how your data is used<\/p>\n

A great deal of good can come from researchers using our health information. But it\u2019s important researchers and ethics committees take care to comply both with legal requirements and with people\u2019s reasonable expectations about their privacy. <\/p>\n

Our health information is inherently sensitive. There are valid reasons that people might prefer not to have that information used by researchers, even if that research could ultimately benefit society. <\/p>\n

People concerned about the research use of their health data might choose to opt-out<\/a> from the secondary use of My Health Record data that is planned to start in the future. <\/p>\n

But in other instances, preventing further use of our health data requires reading the fine print, and asking questions about where the data is going. And sometimes, people might not be given that option.<\/p>\n","protected":false},"excerpt":{"rendered":"A group of Australian veterans is suing the Australian government over claims the Department of Veterans\u2019 Affairs passed…\n","protected":false},"author":2,"featured_media":928922,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[64,63,137,500],"class_list":["post-928921","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-au","tag-australia","tag-health","tag-healthcare"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/928921","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=928921"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/928921\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/928922"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=928921"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=928921"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=928921"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}