ANALYSIS: The digitisation of health records is seemingly the next big step for governments and insurance companies wanting evermore data on citizens and consumers. Will it lead to healthier lives, or, be yet another tool of data capture in aid of a surveillance society and security state? Our intrepid investigator, Lois Lane, takes a deep look at some vexing issues for the present and the near future.
“There is no trap so deadly as the trap you set for yourself”
– Raymond Chandler, The Long Goodbye
MyHealth seemed like one of the ‘Big Ideas’. Set in motion over six years ago by a Labor Government it held out the promise of a digitised health records future that offered a centralised online medical records system, a research treasure trove of anonymised health data, and was designed to be opt in, rather than opt out, in order to foster informed consent.
A month or so after the launch of the opt-out period the policy is in tatters, the government is on the back foot, and calls to suspend the entire roll out are being made around the country by politicians, health care providers and privacy experts.
Epic Fail Has UK origins
Australia’s planned system has a privacy framework that is identical to a failed UK medical records system, care.data, that was cancelled in 2016 after it was caught selling patient information to drug and insurance companies.
Tim Kelsey, the man who was in charge of care.data is now implementing MyHealth for the Australian government.
The registrations have slowed, sector participation is low, and patient summaries are rarely accessed. Doubts exist over the accuracy, the relevance, the access, and the ability of service providers to accurately upload vast numbers of records in a timely manner to the correct MyHealth accounts. Even the international IT community has slammed the stalled service.
Health Data Security Concerns
The safe storage of confidential health records in NSW has recently been under scrutiny after poor security let members of the public trespass and access patient information.
The documents contain deeply intimate information of more than 400 vulnerable patients’ personal profiles, medical conditions, behaviours, accidents, treatments, and medical history.
Hiding In Plain Sight
Names, date of birth and test results for around 7,200 pathology tests at the Women’s and Children’s Hospital from 1996 to 2005 were leaked online as part of an academic presentation on childhood infections posted to the hospital website in 2005.
The online Power Point presentation was available for 13 years and clicking on a single button revealed patients’ records. Whilst the publishers of the data have closed off access to that data, it was shared online for years, so scrubbing the data completely will likely be impossible. SA Health have launched an urgent review into this and other possible breaches.
Giving It Away
Health data is gold for the seller. Whilst individuals might be compromised by targeted leaks, the real value lies in providing data to insurance companies, drug companies, and health care providers including government contractors. The government policy on giving MyHeath data to Insurance Companies is developing but currently Insurance Companies have to seek patient permission to search Medicare records, and then-Prime Minister Turnbull has defended their right to patient information.
NIB Health Insurer boss, Mark Fitzgibbon, is hoping the fund can get permission from its 1.5 million customers to access their individual MyHealth Record data before 2020.
“We desperately need this data to make the world a better place,” he told media outlets in July.
Hackers Be Hacking: No Data Base Is 100% Safe
In what is believed to be a state sponsored attack, Singapore was targeted by hackers earlier this year and 1.5 million records stolen, including those of the Prime Minister.
At this stage My Health Records have been created for nearly 6 million Australians. Thousands are opting out every day citing privacy and data security concerns.
There is an undignified chaos within the Government at the moment as the key elements of the launch: the three month the opt out period, the ability of records to be accessed, the restrictions around removing one’s data, have been roundly criticised by the Australian Medical Association, privacy advocates, politicians of all stripes, and most commentators.
In a stunning turnaround, every element of the newly launched government design will be tinkered with. The Minister for Health Greg Hunt is extending the opt-out period, has conceded that people should have the right to delete their records if they choose, has agreed that despite his assurances that policy would guide who could have access, says he will now legislate to make a court order a requirement to access someone’s MyHealth records.
This tinkering does not address the reality that all pathology and diagnostic reports will automatically be uploaded unless you specifically withdraw consent for each and every procedure.
Sensitive information such as HIV status, pregnancy results, prescriptions for such things as PrEP, specialist letters, discharge and events summaries, even the names of the treating doctors gives a picture of one’s treatment.
This highly sensitive medical data, if not protected by the patient, with passcodes, is automatically available to every registered provider with access to My Health Record.
Your physiotherapist does not necessarily need to know your complete medical history, but if you’re not scrupulously careful, they could gain lawful access to your complete records.
Here’s Looking At You Kid
MyHealth has confirmed that a record of access to your records is not individualised. A person in an organisation exercising anonymous access cannot be identified or even be held accountable. In a large hospital identifying a data security breach will be almost impossible as all record enquiries are at the Provider Organisation Level, not the user level.
Families at risk
Family law experts have also warned that the MyHealth system could be used by abusive and violent partners. A loophole in the system allows a parent who is not the primary care giver to set up a My Health Record for each child, without the consent of their former partner.
Accessing their medical records gives a head start to an abusive parent who wishes to locate children whose whereabouts have been withheld due to fears for their safety.
The chief executive of the National Council of Single Mothers and their Children, Terese Edwards, had “serious concerns” about the privacy and safety of vulnerable women under the My Health Record system, “especially if they have had an abusive or controlling person in their life and particularly if there’s children involved”.
MyHealth and DNA
The Present Day
DNA is currently being used in every aspect of medicine to predict, diagnose, and customise treatment. From genomic scans to determine the health of a zygote to Personalized Medicine and Cancer to tailoring drug therapies in psychiatry DNA is expanding into every branch of medicine. A full or partial DNA profile will be a standard data set on most medical records within a decade.
The Victorian Government announced proposed changes to police powers that would allow detectives to take DNA from those accused of violent crime without their consent. Currently there are over 50,000 DNA samples from unsolved crimes that do not match any of the DNA samples currently held by police. Over 8,000 samples are recorded each year but with the new laws this number is expected to rise to 70,000. This legislation brings Victoria into line with other States and is expected to pass Parliament this year.
The Past: The Golden State Killer
After a three decade reign of terror committing hundreds of burglaries, killing more than a dozen people and raping over 45 women, the man the police had no clue about, apart from DNA, the Golden State Killer, was finally tracked down through a website that had DNA samples submitted from a distant relative for genealogical research.
Alleged to be one of worst serial killers in US history, it turns out the alleged Golden State Killer, is Joseph James DeAngelo – a 72 year-old retired police officer with a history of domestic abuse.
Closer to home, in Geelong, Victoria a highly dangerous serial rapist plead guilty in court earlier this month to the brutal rape of a woman in her own over 30 years ago after DNA evidence tied him to the scene. Swabs were taken from the victim soon after the vicious attack in November 1985, but at the time DNA testing as a science was in its infancy. It was only a few months later, in Britain, when DNA was successfully used in a criminal investigation. Then, in 1987, DNA evidence was successfully used in the United States in a case against an alleged rapist in Florida. It was only until 2014 when the swabs from the Geelong incident were re-tested and Michael ‘Mick’ Mush was then arrested two years later over the horrific crime.
The ability for police to search international and national DNA data bases for distant relatives, as well as perpetrator is a powerful crime fighting tool.
Combined with improved ability to get DNA samples from old evidence of past crimes this opens up cold cases to the most powerful crime fighting tool ever available.
If DNA profiles, even a partial ones, are on MyHealth records then it presents irresistible opportunities to search for a variety of purposes. Compatible organ donors could be located, police could eliminate suspects from an investigation, parenting where genetic issues are a factor could be assisted, Insurance companies could sort and exclude high risk applicants, medical treatment could be restricted to those most likely to respond. Incentives for abuse of the information are huge.
Under revised legislation, the Minister plans to protect MyHealth records from being accessed without a warrant. The protections are flimsy, and there is inadequate identifying surveillance of those accessing records. In addition, proposed Privacy and Data protection Laws provide inadequate protection for individual and collective MyHealth records. The Privacy Bill potentially overrides the revised protections proposed under MyHealth.
Desk Top Detectives
If MyHealth records are able to be accessed by police and government agencies it will change policing and privacy forever.
In the foreseeable future, crime scene DNA could be run against the MyHealth centralised medical data base. Once police collect and profile their DNA sample from the crime scene a desk top analysis could sort through the millions of records to identify, if not the perpetrator, then relatives.
In the era of cold cases police could possibly identify the suspect by their DNA, even if that person has no medical records on file, through their relatives. If access to living records is refused, MyHealth will keep an individual’s medical data for 30 years after death, and searching that would present fewer ethical hurdles.
Ancestry.com and other popular sites such as My Heritage DNA, 23andMe and comparison site GEDMatch say customer DNA files numbering more than 10 million will only be shared with law enforcement via subpoena or court-ordered request.
Victoria Police and the Australian Federal Police said the organisations do not currently use online genealogy databases to help solve crimes, but Victorian Police are researching possibilities, and would not comment further.
Bill Rowlings from Civil Liberties Australia said for years the organisation had called on the government to enact a national law to clarify the uncertainty about people’s DNA and how it can be used.