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A new centralised, digital database housing health information has some people worried. And as Jake Kendall reports, it’s understandable why some marginalised groups would be concerned.
The cornerstone project of the Australian Digital Health Agency (ADHA), My Health Record (MHR) will contain everything from scripts to pathology reports, a list of medical conditions, referral letters, discharge summaries, psychologists’ notes, results of sexual health screenings, and HIV status. While there will be security settings allowing you to restrict access to specific documents, these can be overridden in certain circumstances by law enforcement agencies. The Australian Tax Office and the Australian Bureau of Statistics have also expressed an interest in accessing the data. As have research institutes and clinicians’ groups. Then there’s the very real concern that your private information will be hacked.
There is a risk, say experts, that fear of such breaches of privacy may cause people to avoid seeking treatment — especially when it comes to sexual health. Indeed, through Twitter, the Australian Sex Workers Association, Scarlet Alliance, issued this statement: “For sex workers, getting a STI or HIV test under the new MHR could lead to rapid criminalisation and charges. Several states in Australia continue to criminalise sex workers living with HIV and some STIs. [MHR] will undermine our health and discourage testing.”
Positive Life NSW is another community organisation voicing concerns. “Positive Life believes the ownership and confidentiality of your personal electronic health data must remain under your full control as a person living with HIV,” said Dejay Toborek. “How can doctors and health services keep confidentiality for people living with HIV, people who inject drugs, sex workers and other vulnerable populations if law enforcement authorities can access the information? The safe, confidential space of a non-judgemental doctor’s consulting room is now at risk.”
Of course, there is an upside to the scheme. Centralisation and digitisation of information means your health record can be accessed anywhere, which is particularly useful for people with HIV who are in the care of multiple healthcare providers. In an emergency, healthcare providers will have instant access to your medical history and be better able to manage your care. You’ll also be able to organise script repeats online. “My Health Record provides many benefits to patients,” said Minister for Health, Greg Hunt, “including reduced duplication of tests, better coordination of care for people with chronic and complex conditions, and better informed treatment decisions."
There’s no doubt that the primary use of MHR holds many advantages for people with HIV. It is the secondary use of the health data that has people worried. According to Joshua Badge of the Victorian AIDS Council, such anxieties are understandable. “My Health Record is a well-intentioned policy, but its execution discourages marginalised groups from confidently accessing healthcare,” he said. “It stokes fears of the forced disclosure of confidential health information — such as results of sexual health tests and HIV status — which undermine public health outcomes and the individual wellbeing of people in the LGBTI community.”
Between now and December, the government will implement a communications strategy in a bid to allay people’s concerns and sell the benefits of the scheme. Member of the steering group for the national expansion of the MHR, Dr Edwin Kruys, said more must be done than that if the critics are to be won over. “There is a large group of sceptics. It appears that so far neither the ADHA nor the Department of Health have been able to get this group on board. The usual promotional material touting benefits is unlikely to change anything. A more effective approach would involve addressing the concerns, issues and perceived obstacles.”
So, what to do? The message from Positive Life is clear: if in doubt, opt out. “People living with HIV from vulnerable populations, such as sex workers, people who inject drugs and others will be better to opt out of the My Health Record,” said Toborek. “If you do not opt out, your consent is implied.” Badge agrees: “People’s consent is assumed without their having all the relevant information. It’s critical that people — especially people from gender and sexual minorities and people living with HIV — are made aware of the potential risks of the My Health Record system ahead of the three-month opt-out window.” That window will be open from 16 July to 15 October. After that, every Australian who has not opted out will have a record automatically created for them.