There are a number of reasons why you might not want to use or completely remove your Australian My Health Record.
The Health Record in question is not "your" record. It is a record kept by the government containing information regarding your health.
The only way to make a decision that is based on knowledge and not emotion is to weigh the benefits and drawbacks of the option. We have all seen the glossy posters produced by the proponents of the new Australian online medical record initiative, which give the public hazy reasons why they should subscribe to the scheme. These posters contain big promises, and we have all heard the big promises. It is only right that someone should point out at least a few reasons to opt out of it or delete it while there is still time to do so, and here are some of those reasons:
Why not take part?
Laws and regulations that govern and safeguard My Health Record are subject to modification at any time in order to accommodate the shifting priorities of the political system.
It has already taken place: a bill that was specifically designed to enable the creation of trial online health records for one million people who never asked for it was passed through parliament and signed into law. At that time, the requirement to obtain consent was a significant legal obstacle; consequently, this was eliminated. Your prior approval is no longer necessary for the government to collect and store information regarding your medical history. People are able to opt out of the e-Health program at this time; however, there is no assurance that this will continue to be the case in the future, nor is it guaranteed that opting out will not be made more onerous. There is also no assurance that some budget whiz won't one day come up with the idea to start selling health record data to private corporations, insurance companies, pharmaceutical giants, marketing researches, or anyone else. This is something that is not guaranteed to happen. It is possible that this issue is nothing more than an additional bill that was rushed through the legislative process.
In the future, it is possible that all health information will be compiled and stored in a massive database, where it will be accessible for uses apart from health care and compared to the contents of other databases. The Australian Bureau of Statistics has already made public its intent to create a link between census information and medical records. Additionally, the Australian Taxation Office is advocating for an increase in the sharing and utilization of personal data held by the government.
During times of pandemics and other disasters, laws and regulations protecting personal information are subject to sudden and significant shifts.
The COVID-19 pandemic prompted the implementation of unprecedented surveillance regimes as well as several legislative changes, all of which have the potential to have a significant impact on individuals' civil rights and privacy. There is a good chance that the new administration will make it permissible, or even mandatory, for the data contained in your My Health Record to be disclosed, linked, and utilized in ways that you neither agreed to nor would consider acceptable under any other set of circumstances.
At any point in time, the patient's control over their My Health Record can be revoked.
At the moment, MyHR is being marketed to residents of Australia with the promise that they will have control over what is entered into the system as well as the individuals who are permitted to access it. Despite this, there is already a powerful medical lobby that advocates for patients to lose control over the electronic health records that are kept on them.
Sadly, despite the mounting evidence of positive outcomes of the opposite approach, Australian doctors do not have a good history of treating patients as equals, encouraging patient empowerment, allowing high patient involvement and control over their own healthcare, and so on. This is despite the fact that the opposite approach has been shown to be more effective. or providing patients with access to all of the information that must be considered before giving their consent and making a decision that is truly informed The majority of medical practitioners would rather have the relationship of a commanding master and an obedient serf with their patients than that of equal partners; they also prefer to keep medicine an exclusive, close-knit club rather than providing an open and honest service to the population that is footing the bill for it. For instance, in spite of the fact that numerous self-tests for a wide variety of diseases are readily available in other parts of the world, such tests cannot be purchased in Australia without a referral from a physician or a prescription. The Australians are unable to investigate any aspect of their own bodies without having that information recorded and reported elsewhere. This begs the question: is the focus really on "finding a problem early" and "saving lives," or is it more about maintaining medical control and surveillance over Australian patients?
You have no way of controlling or even knowing exactly who has viewed your record.
You are gravely mistaken if you believe that your physician will be the only one with access to the digital health information that is stored about you. Access to this system will be granted to a large number of people by default, as well as by design. These include medical professionals such as physicians, nurses, pharmacists, and physiotherapists; administrative and clerical workers of varying stripes; and a wide variety of other staff members working in a variety of organizations and institutions. The logging system for your health record does not keep track of the individuals who access your record; rather, it records only the institutions for which they work. For instance, if you go to a hospital that has a thousand employees, all of those thousand people immediately have the potential to access your private medical information without your knowledge, without being tracked, and without being held accountable. When you combine this unfortunate reality with the fact that many medical facilities require their employees to use the same password for every online account, we have a situation in which it is impossible to keep your information private.
It is possible that private companies will gain access to sensitive information regarding individuals' health and personal lives.
The Department of Health, despite facing significant opposition in parliament, transferred the National Bowel Cancer Screening Register and the National Cervical Screening Register to Telstra in 2016, thereby providing a private company with unfettered access to people's most sensitive health information without first obtaining their permission. Big data and open data are two concepts that Telstra is an outspoken supporter of. According to David Vaile, the Executive Director of the UNSW Cyberspace Law and Policy Centre, "They are obviously a commercial operation; they are often seeking to use personal information for uses beyond what it was originally collected for and to push the limits of privacy and data protection law." After this disturbing turn of events, it is abundantly clear that eHealth data can be transferred, sold, shared, or have their management outsourced in the future, and it is highly likely that these actions will take place.
Update: in June of 2018, it was found out that the online service Health Engine, which is part-owned by Telstra and is used by thousands of medical centers and doctors to manage bookings and appointments, was selling patient personal and medical information for the purpose of tailored marketing. and sending daily client lists to a law firm, which not only violates patients' right to privacy but also cleverly preys on people when they are at their most vulnerable. They refer to this practice as outrageous, which is the delivery of information that is relevant and timely to our users from the many different advertising partners we have. The most unsettling aspect of this situation is the fact that HealthEngine and My Health Record have an agreement to share data with one another.
Your online medical record cannot be guaranteed to be safe, secure, or private by anyone, nor will anyone attempt to do so.
When a system has such a large number of users, the majority of whom, including medical professionals, have only the most fundamental computer skills, and when that system also contains a massive amount of highly personal data, the system will invariably be subject to attacks, breaches, and misuse. The data breach that occurred during the 2016 Census was the perfect example.
Will the government compensate you for the loss of the value of your electronic health records in the event that they are stolen by an online criminal gang? The distinction lies in the fact that you cannot offer compensation to someone for the loss of their personal information. Many people are unaware of the fact that once an individual's identity has been stolen, it can never be recovered and the thief is free to use it however they see fit for the rest of their lives. People who have had their identities stolen will tell you how miserable their lives are if you talk to them and listen to what they have to say. It is not necessary to be able to access personal electronic health records at any time or from any location, and there are not enough benefits to make the potential downsides worthwhile.
Graham Ingram, AusCERT general manager
Once the information has been distributed, it is impossible to completely remove it.
Nothing is ever removed from data storage because it is constantly being made larger, faster, and more affordably. In modern databases, deleted records are not actually removed; rather, they are simply marked as "deleted," but the data they contain may remain in the database for months, years, or even permanently. If someone tells you that you can permanently delete your electronic health record at any time, this only means that it will no longer be visible; however, all of your health information may still be stored and can be viewed by anyone who has access to the database. and used for any purpose that is permitted by the laws of the day.
Opting out prior to the creation of your record is the most effective strategy for preserving the highest possible level of confidentiality. The second best option is to "delete" it before it collects an excessive amount of data, at the very least to prevent it from amassing any more data. Once an electronic health record has been created, the Department of Health and Human Services has stated in the past that it is not possible to delete the record. It is only possible to deactivate it and hide it from view for some of the individuals and organizations that have access to the system, not everyone.
Update: as of January 23, 2019, the page to cancel a My Health Record claims that they have begun deleting records that have already been cancelled.
There is a possibility that your medical record will be linked to census and other data.
The Australian Bureau of Statistics has revealed their intentions to connect the information gathered from the census and household survey to information gathered from other government databases as well as health records. The Australian Bureau of Statistics (ABS) recently made the decision to retain personal information that was collected during the census. This decision has already demonstrated an alarming mission creep as well as a disrespect for individuals' right to privacy and the safety of their personal information. During the census and other surveys, the Australian Bureau of Statistics (ABS) has already asserted that it has the authority to compel every Australian to hand over their personal information. Why would you want to give them access to such deeply personal and sensitive information about your health when there is [still] the opportunity to opt out?
If your medical history is widely disseminated on the internet, you might find that you avoid going to the doctor.
There are a lot of people who have legitimate concerns about their privacy in this digital age, and there is already a noticeable trend of people avoiding going to the doctor, especially when it comes to matters as sensitive as infections, mental health, and sexual health. Your private conversations with your doctor about your health concerns will no longer be kept private thanks to the advent of electronic health records. Instead, everything you say about your health will be recorded in the system and can be viewed by anyone, anywhere in the world in a matter of seconds. If MyHR becomes widespread and either makes it difficult to opt out of using it or plans to keep patient health data even if they do opt out, then the general population will be put at a greater risk of contracting infectious and communicable diseases as well as mental health problems. This is because many people will be discouraged from seeking treatment out of concern for their privacy.
Patients will not have access to the complete information about their health through the My Health Record system.
In spite of the widespread belief that patients will, once they have access to an online health record, be able to learn everything there is to know about their bodies, this is not going to be the case. Since the purpose of MyHR is to make medical records available to other medical practitioners, institutions, and the government, it will only contain information that is already known to the patients. The goal of the project is not to assist patients in gaining a deeper comprehension of their health condition. The physicians will continue to keep their patient notes to themselves, will continue to pass medical referrals in sealed envelopes or through medical commutation channels, and will continue to discuss their patients with other physicians behind the patients' backs.
There is a possibility that My Health Record will not make it any simpler for patients to access the results of diagnostic tests.
A great number of individuals expressed their delight upon learning that all of their pathology test results and diagnostic imaging reports will soon be uploaded to their MyHR accounts. Some people joined MyHR solely for the benefit of being able to see their results as quickly as possible, and this was their primary motivation for doing so. They believed that they would at last have access to the information about their body that they had paid for with their own money or with taxes, that they would be informed about their own health in a timely manner, that they would be able to avoid unnecessary anxious waiting, that they would be able to prepare questions for their doctor, and that they would make the most of their next appointment. It does not appear that this will take place, which is very disappointing.
There has never been a requirement for a patient to have a MyHR account in order for their physician to have the ability to request that any results and reports be forwarded to their patients as soon as they become available. This ability has always been available to physicians. The only reason the patients are not informed is because many laboratories refuse to copy the results and give them to patients even when a doctor specifically requests that they do so. besides that, many medical professionals are of the opinion that patients should only obtain information about their own health with their doctor's permission and that patients should be required to attend so-called "follow-up" appointments. Even after the laboratory has uploaded the results, the patient can be prevented from viewing them in their MyHR account. Whether or not MyHR is in place, a physician will continue to schedule unnecessary follow-up appointments for their patients if they feel it is in the patient's best interest to do so.
Even though some results are as simple as a 'yes' or 'no,' and even though some patients, such as scientists, are often more knowledgeable in the area than the doctors, the medical establishment's favorite excuse is that patients are not qualified to understand the results. This excuse is used despite the fact that some patients, such as scientists, are often more knowledgeable in the area than the doctors. despite the fact that the patient should have the final say in determining what and when they wish to learn about their own health, At the same time, there are some forward-thinking physicians who are pleased when their patients take an active role in their healthcare, who are pleased to share any and all information that they possess, and who respect patient decisions. Those patients aren't in any way "more qualified" than other people; they just happen to have a competent physician. Therefore, it has nothing to do with the qualifications of the patient and everything to do with power, paternalism, and control, all of which are things that certain doctors can't let go of.
In terms of credentials, it is important to note that the vast majority of medical professionals do not have training in online safety and data security, despite the fact that they use computers, collect, store, and share highly sensitive information about their patients. According to a report by the Avant Group,
92% of general practitioners do not understand the privacy requirements for My Health Record, which could potentially lead to the risk of privacy and security breaches.
It is possible for a doctor's computer to be infected with a plethora of malicious software, including trojans, viruses, spyware, and other forms of malware, which can access and steal the identities of patients as well as their health information; however, the doctor is unlikely to be able to detect or eliminate the issue. If, on the other hand, the doctor decides to hire an IT professional to maintain their computer, this means that a complete stranger who is not bound by any codes of medical ethics or privacy laws will have access to all of your medical records.
It is not possible to communicate online in a way that is both widely accessible and safe and secure in Australia.
In order to register for myHR, users need to first have a myGov account, which in turn necessitates that the user have an email address. There is not a single free email service in Australia that is easily accessible by a large number of people and is completely hosted and maintained within Australian borders by reliable Australian personnel. The majority of Australians are turning to free email services such as Gmail, Hotmail, Outlook, and others that are owned and operated by companies based outside of Australia and are therefore not bound by Australian laws. Because widespread mass surveillance is in place, this indicates that foreign agencies are processing, storing, and monitoring communications that are extremely private. It also indicates that those foreign agencies may have access to the data stored in myHR, in addition to any other information contained in myGov accounts that are registered with those email addresses.
Your communications, including your phone calls, text messages, emails, bank accounts, Internet browsing, purchases, travels, and movements, are being monitored.
You don't have a choice in the matter. But do you really want your medical records to be monitored as well, especially considering the fact that you still have a chance to prevent this from happening?
The only data that cannot be misappropriated, leaked, hacked, sold, or spied upon is the data that was never collected anywhere in the first place. There is never going to be any other kind of guarantee.
How to unsubscribe or delete your account.
Before November 15, 2018, if a person wanted to opt out of having a record created, the Digital Health Agency allowed them to do so by using a page on myhealthrecord that has since been removed. gov au to opt out of receiving further communication online, or call 1800 723 471. In order to opt out, the Digital Health Agency demanded additional forms of identification, such as a driver's license, passport, or any of the other available options. One's Medicare card number was all of a sudden insufficient. It seemed as though Digital Health took advantage of the opportunity to acquire additional personal identification details and cross-check those details with databases maintained by the government that have nothing to do with healthcare. Imagine the level of privacy invasion, data linking, and cross-agency surveillance that is in store for those who do not opt out of this Health Record. If this excessive data collection and linking was required for opting out of the record that one never wanted in the first place, imagine what is in store for those who do not opt out.
If you missed the deadline to opt out of My Health Record and ended up with a record that you do not want, you can use the Cancel a My Health Record page to delete the record. The deadline for opting out was November 15, 2018.
For additional reading:
Government's "My Health Record": No Consent Required? The deadline for opting out of withdrawal of consent is October 15, 2018, according to a media release from the Australian Privacy Foundation.
My Health Record is a campaign run by the Australian Privacy Foundation.
A Concise and Informative Overview of My Health Record, Australian Privacy Foundation
Your Privacy and Your Health Data Are Up for Sale, According to the Australian Privacy Foundation
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