Given the thousands of access points to these records, it is equivalent to making your entire medical history public, but only to medicos and the entire Australian Public Service, which is millions of people.
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1/ Imagine a Prime Minister being rolled because of the release or stigmatized health information (i.e. mental health history).
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2/ Imagine an MP being blackmailed for classified information they have access to by one of the hundres of thousands of people with access to the information.
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3/ Imagine a domestically violent ex partner or a stalker access a patient record in order to harass them.
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4/ Imagine the Immigration department pulling a migrants health record in order to reject their application. (NB: immigration already forces prospective migrants to disclose an invasive amount of health information which means LGBTIQ+ folk are rejected at higher rates.)
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5/ Imagine Children's health records being accessed by schools with institutional connections to medical institutions (through their parent organisations) in order to reject them.
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6/ Imagine your workplace firing you for reasons that are not made clear, but in fact it is because they have access to your
#MyHealthRecord which shows you attend LGBTIQ+ specific clinics - effectively outing you.এই থ্রেডটি দেখান -
7/ For point 6, this is particularly important for Schools, Aged Care Facilities and some Private Health orgs who are exempt from the Anti-Discrimination Act, and are legally allowed to fire LGBTIQ+ staff (forcing them to remain in the closet at work).
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8/ Imagine Centrelink cutting off disability payments because of unprofessional comments made by medicos on health records which understate the significance of someone's disability (bc it is stigmatized or misunderstood - e.g. 2 million Australians with rare diseases/disorders).
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9/ Imagine being forced to move out of your apartment by the strata committee because someone in the building has access to your
#MyHealthRecord and uses it to screen new renters who move in, and exlcude people with issues they seem to be unacceptable (LGBTIQ, mental health).এই থ্রেডটি দেখান -
10/ Imagine children being bullied by other children because the bully's medico/APS parents have unwittingly allowed their child access to
#MyHealthRecord on their home laptop.এই থ্রেডটি দেখান -
11/ Imagine as an Australian, being unable travel around the world bcl the govt through it's intelligence network sharing has shared your health data with immigration depts in other countries (i.e. stopped at the border and deported bc [add stigmatized health condition]).
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12/ Imagine being one of the 350,000+ expat Australians being outed as LGBTIQ+ to a foreign govt or having a health condition they view as untenable, in a country where this can have you deported, or worse, killed, bc
#MyHealthRecord is the easiest private record to access.এই থ্রেডটি দেখান -
13/ Imagine a survivor of sexual assault having their
#MyHealthRecord used in a court to discredit their tesitmony on the basis of their mental health or to victim blame (quarterly STI checkups, which are best practice, used to signal promiscuous/risk seeking behaviour).এই থ্রেডটি দেখান -
This already occurs, however,
#MyHealthRecord can be weaponised to further, especially in private settlement conversations.এই থ্রেডটি দেখান -
14/ I also haven't even gone into improper professional use of data by medicos. Imagine if a doc withheld opiate pain relief bc of their assessment of someone's
#MyHealthRecord. Potential to inflict cruelty upon people within the health system is extreme, and data is power.এই থ্রেডটি দেখান -
15/ Again, denial of opiate pain relief is common, particularly for women and people of colour as our pain is seen as less worthy of our attention, as evidenced in peer reviewed journals.
#MyHealthRecord will make this worse. https://www.independent.co.uk/life-style/health-and-families/health-news/how-sexist-stereotypes-mean-doctors-ignore-womens-pain-a7157931.html … https://www.theguardian.com/science/2016/aug/10/black-patients-bias-prescriptions-pain-management-medicine-opioids …এই থ্রেডটি দেখান -
16/ Imagine you’re a serving veteran diagnosed with PTSD, depression, anxiety but have gone outside of Defence to get support but your info leaks back to Defence. Effectively career ending. [This one from a veteran who has DM me, posted anonymously with his permission]
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Since you're all here, I might as well continue the conversation/diatribe.https://twitter.com/jehankanga/status/1018791029405696000?s=19 …
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Big Question: why is government so bad at data security, data privacy and confidentiality. Answer: Because they haven't had to validate their platform (yet). The govt doesn't see us, the people, as the user/customers, they see themselves as the customer, and us as the asset.
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If you were the customer, and someone asked you to pay $1 per year to participate, would you? No. You couldn't pay me. The potential upside of a doctor coming to a correct diagnosis based on reams of random medical history hardly compares to the extreme risk of a data breach.
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17/ Imagine a random medico writes in your permanent
#MyHealthRecord, info which is spurious/false but you can neither see who created it, cannot delete it. It's already happened. Data accountability, verifiability and integrity all absent from MHR.https://twitter.com/dandelionaround/status/1018761536343400448?s=19 …এই থ্রেডটি দেখান -
It's literally every data security, every privacy and confidentiality issue that ever was, as a disaster, in one platform. The magnitude, breadth and depth of incompetence is quite impressive.
এই থ্রেডটি দেখান -
Quick summary. There are multiple independent problems which are solvable but probably need to start from scratch. A. Privacy is important. Privacy is about consent. Ppl need to have the power to give active, informed, enthusiastic, continuous consent, for every view/use case.
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B. Confidentiality is also important and isn't privacy. Confidentiality is the responsibility to hold sensitive data securely - in trust. Allowing every Department unfettered access to your data is a breach of confidentiality, inherent in the architecture.
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C. Data ownership. Australians should be centred as the users of the system, not medicos, not Dept of Defence or Dept of Immigration. It's our data, our health, for our benefit. The system needs to be changed to allow owners of data to delete incorrect data, improve integrity.
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D. Ethical tech development. We are in a post-Russian hacking, post-Facebook/Cambridge Analytica world. We know what our data means, and it's power to destroy lives. The govt needs to invest in an ethical tec framework, incl data privacy + confidentiality training for all staff.
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E. Validation. If the market rejects the platform, shut it down. It's a failure. Like any startup with a stupid idea, or poor execution, or both, shut it down. Start again, learn, and make something people will love and engage with bc it is designed for them and to serve them.
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F. Data needs a Legislative Framework. A platform of this scale, importance and criticality of info needs laws to govern it. We need a Bill of Rights to enshrine our Right to Privacy. That may take a while, so in the meantime, pass bills to protect us, and establish a watchdog.
এই থ্রেডটি দেখান -
G. Trust through competence. Govt has a bad reputation with tech bc it is verifiably bad at tech: -
#Robodebt - mygov - ABS#Censusfail via IBM (recently rehired for $1B
)
- NBN
Stop being so bad at tech and maybe we might start trusting you with our lives+our data.এই থ্রেডটি দেখান - 4টি আরও উত্তর
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