My health record: the benefits and risks explained

Digital health records are here to stay and as safe as cars have given way to cars, so paper medical records will give way to electronic ones.

This week has seen intense debate over the push for Australians to establish online health records that, over time, will become a summary of their key medical information.

While one advocates the benefits, the other warns of the risks.

The debate is happening now because we have just come in within three months. period during which people may choose not to have a health record

If they do not withdraw before October 15, a My Health Record will be automatically created for them.

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Although the decision seems urgent, it is not. People can always change their minds. If they retire now, they can opt later.

If they do nothing now and decide to retire later, their record will be locked and kept until 30 years after their death.

But the digitization process presents vulnerabilities and people have to weigh the benefits against security risks, privacy issues, and the lesser-reported consequences of secondary use of their health data . personal data.

Since the launch of the program in 2012, nearly six million Australians have enrolled and nearly 13,000 professional health organizations are connected, including general surgeries, hospitals, pharmacies, diagnostic imaging and pathologies. Benefits

The main benefit is that such a record will make health care management for patients and their doctors easier, safer and could save life in case of emergency.

Like all doctors see the same information, and unnecessary duplication of pathology and imaging surveys.

It should also reduce preventable hospitalizations and improve coordinated care for people with chronic and complex health conditions.

As details accumulate, doctors will have more information to make decisions, diagnose and treat

Currently, doctors are working in isolation with no access to information. set of clinical, medical and prescription information of a patient.

This is in part why Australia has 230,000 mishaps a year that result in admissions to the hospital. Currently, physicians work in isolation with no access to the full range of clinical, prescribing and health information … ” width=”620″/>

Clinical Professor Meredith Makeham, herself a physician, says that complete information is needed to make good clinical decisions.

As Chief Medical Advisor of the Australian Digital Health Agency, she administers the program. Health as a "patient-controlled file".

By having access to their records, patients have much of their medical history in one place and are able to track and better manage their own care. built progressively, it may never become exhaustive because it can decide what medical information they do not want to include.

They can ask their doctors not to download sensitive information on topics such as HIV status, abortion, mental illness or cosmetic surgery. They can also decide who has access to their personal files.

And the risks

But with the data, there are always risks. Although my Health Record has not been hacked for six years, last year the details of the Medicare card were sold on the "dark web" and personal data of 550,000 blood donors, including information on "risky badual behavior" was disclosed. The Blood Red Cross Service

The My Health Record system is supposed to have military-grade security with safeguards, including encryption, firewalls, secure connections and constant monitoring.

But this is not invulnerable. Earlier this week, Dr. Steve Hambleton, vice president of My Health Records, told Fairfax that he can not guarantee that there is no hole somewhere.

But if there was a breach, he said that it would be In response to his concerns, Health Minister Greg Hunt said that "it is undoubtedly the the largest and safest medical information system in the world, irrespective of the national level "

. sure and even if the professionals who connect to it must meet rigorous standards, violations may occur. Doctors or hospital staff can leave an open portal or a patient can download information on an unsecure computer that can then be hacked.

The hacking is not immediately apparent. It can occur silently and long before it is detected.

Although people can protect access to their records, receive an alert when their file is accessed and have an audit trail showing where and when their records were viewed. backups also have weaknesses.

Records, protected by a PIN, may be bypbaded in case of emergency.

Under the law, they can be overridden for law enforcement reasons. The Digital Health Agency may disclose health information if it "reasonably believes" that it is necessary for issues such as prevention or investigation of crimes and the protection of revenue public.

Disclosure would be limited and, on a case-by-case basis, the holder of the document may or may not be informed of the disclosure. Although the police can get information, insurers can not, although a recent survey suggests that people are willing to make their data available to obtain lower health insurance premiums.

Digital Rights Watch He urged Australian citizens to become aware of privacy issues.

Alan Petersen, professor of sociology at Monash University, worries about the lack of substantial public consultation on the protection of privacy. Recording. ” width=”620″/>

"Health data is gold dust."

Petersen just published the book, Digital Health and Technological Promise and says that about one-third of all data breaches involve In addition to obvious security breaches, he claims that violations innocent people are also committed.

Earlier this year, the Australian Privacy Commissioner ruled that the federal Ministry of Health was unintentionally violating privacy laws. About 18 months earlier, it published anonymized health data on 10 percent of the Medicare Benefits Scheme (MBS) and Pharmaceutical Benefits Scheme (PBS) population. on the government's open data website for "research purposes".

By highlighting unique aspects, researchers at the University of Melbourne were able to re-identify seven well-known Australians.

Petersen says: [traduction]

Secondary Use

It is mostly interested in the secondary use of data and their impact

Secondary use occurs when data is unidentified, aggregated and used at a later date. Other purposes, such as research for the public good.

Petersen says that people mistakenly think that big data aggregation does not affect them. It does this because it can guide treatment decisions for individuals and can be a blunt instrument hitting the wrong target.

He says that big data leads to excessive dependence on algorithms, machine learning and machines. Human prejudices can unwittingly be programmed into an algorithm and then perpetuated by machine learning.

"The machines are programmed to respond in a fixed way, without nuance."

There are cases of over-medication The algorithms look for patterns and establish correlations – often false – that do not interpret and tell us nothing about the cause and the effect. ", Says Petersen

He agrees with the Law Council of Australia that wants people to be aware of the secondary use of their data and can opt for its use

Makeham says that there is a rocker. For those who do not want their data to be used for secondary purposes, [traduction]

She says that the Australian Institute for Health and Welfare is the custodian of the program's data and that it's a good thing. it will strictly control the secondary use

. call 1800 723 471 or use the online portal at www.myhealthrecord.gov.au

They can also fill out a form available in rural and remote Australia Post outlets and in controlled health organizations by indigenous communities and prisons.

* Jill Margo is Assistant Professor Associate at the University of NSW