Just imagine a public healthcare system that is patient-centred, well-coordinated, run by healthcare workers and free. Our integrated medical records would be easily accessible to our treaters at the tap of a keyboard via a secure platform. Having an accurate digital record would aid diagnosis and treatment.
Instead, we have an underfunded, profit-driven and fragmented health system. In this environment, the public is shunning the initiative to implement an online health record.
Government commenced offering a digital health record in 2012. This was a voluntary scheme, which created a record only for people who requested one. In 2015, however, the government launched My Health Record (MHR), which set out to create a record for everyone unless they opt out. $485 million was allocated to establish MHR and set up an agency to run it.
Implementation is not going smoothly. Beyond the government’s own website, there’s barely a positive word being said for the scheme — anywhere!
History repeating. The program is identical to Care.data, a British scheme launched, discredited and abandoned within two years. The bureaucrat at the helm was Tim Kelsey, who now runs the Australian Digital Health Agency (ADHA)!
Kelsey is not a fan of giving rights to the public. He does not believe anyone using public services should have the right to opt out. A champion of “the database state,” he advocates increased state data collection and matching.
Care.data was plagued with confidentiality breaches. The scheme collected data, which would be sold for a profit to buyers such as drug and insurance companies. All without explicit consent. The lucrative data would be de-identified but, even if done properly, data sets could be matched, making cohorts easily recognised.
Under pressure, the UK government emphatically denied it planned to profit from selling personal data. But shortly after, news broke that government had already sold some patient data to private companies. Trust nose-dived.
Australia’s opt-out tsunami. In July, the first phase of the ADHA program began with people given just three months to opt out. There was no mass information campaign, let alone a plan that would reach culturally and linguistically diverse and remote Aboriginal communities, the deaf community and others with special communication needs. Despite this, on the first day, 20,000 tried to exit the scheme and the website crashed!
Critics in the know spoke out and the media ran with it. On the back foot, Health Minister Greg Hunt, promised changes. Just one has been implemented — people now have an additional month, until November 15, to opt out.
This is unlikely to quell suspicions. Recent survey results show 26% of people plan to opt out by the deadline. But more worrying is the finding that 28% of people had not heard about MHR and had no idea what it meant for them. These figures underscore the lack of meaningful consent.
Australians have been served up worthless “guarantees.” Faced with media scrutiny about secondary usage of data, Hunt vowed that police could not access My Health Record data without a court order. But even Parliamentary Library staff contradicted the Minister! After their research made headlines, these public servants were strong-armed by the Minister to remove their advice from the internet.
Facing a backlash, Hunt continued his soothing talk. However, all the features that the Australian government now points to as safeguards were also part of the British system. They failed spectacularly.
Sensitive data. As debate raged about My Health Record, a massive privacy breach of health data in Singapore made headlines. The government database was hacked, violating the privacy of a quarter of the population.
Privacy is also worrying Australians. Advocates working with women and children fleeing family violence say this system, which allows both parents to access a child’s records, will be another way an aggrieved party can track down an ex-partner.
Surgeon Neela Janakiramanan explains that because the online record will be linked to the MyGov account, family privacy will be eroded. When a woman fills a contraceptive prescription, it will be there for her partner to see.
Janakiramanan says teenagers’ rights to medical privacy are at risk: “I will be opting my sons out because one day, I want them to feel comfortable seeking STD testing without mum and dad finding out about it – because we know that as soon as people worry about medical privacy, they simply avoid presenting for care at all. I don’t have daughters, but if I did, I would opt them out because I would similarly want them to feel comfortable seeking care for contraception and termination services.”
Discrimination and criminalisation. When AIDS emerged in the early ’80s, the fear was palpable that there would be a massive backlash against queers. Today, the HIV community is amongst those with serious privacy concerns about MHR. Positive Life NSW warns that data could be used to set insurance premiums. It could also be used for surveillance of individuals and to market for research and clinic trials. They argue that usage for secondary purposes could lead to potential criminalisation of people living with HIV.
Workers at drug and alcohol services fear the new system could criminalise their patients. Sex workers have similar concerns. They want to be comfortable discussing their work with healthcare providers.
Accessing healthcare should not put someone at risk of being charged with a crime. Terminating a pregnancy is still in the criminal code within several jurisdictions, including Queensland and New South Wales. This is not an academic point: in 2009, a 19-year-old Cairns woman, faced court on the charge of procuring her own abortion after importing RU486, a drug for non-surgical abortions.
Lives are put at risk by a database that erodes medical privacy, especially when linked to the fear of being charged with a crime.
There are dangers for workers as well. The Electrical Trades Union and the Rail Tram and Bus Union have recommended members opt out. Bob Nanva, National Secretary from the rail union argues, “There is simply no justification for employers to seek access to personal health information that does not directly relate to workplace safety.” Unions are worried that bosses may discriminate against workers with conditions having nothing to do with their ability to do the job.
Mental health services and consumer groups have also warned of privacy risks. For example, the transgender community has genuine sensitivities about health data being accessed by those without a need to know.
GP critics. Doctors also question the value of MHR. At best, it will be a summary they cannot rely on and, at worst, a dangerous distraction. Dr Tim Leeuwenburg, a GP from Kangaroo Island, describes MHR as like a “shoe box” full of files. He says, “navigation is difficult as the user is faced with a smorgasbord of PDF documents which can be slow to load and hard to collate and assimilate.” He argues that this unwieldiness will only get worse as more information is added.
The way healthcare is funded exacerbates this problem. Medicare is a single-payer public health insurance system. It is not a public health system, nor is it adequately funded, let alone under the control of healthcare workers and patients.
Most GPs are employed in high-turnover clinics or work in private practice. Many rely on inadequate payments from Medicare. To cover their costs, these doctors often only spend about 10 minutes with each patient. The additional expectation that a frazzled GP navigate a mass of uncurated data sounds like a recipe for disaster.
Inadequate funding, doctors’ practices using software that does not speak to the central system and a slow eHealth portal, means that the system is unlikely to deliver health benefits. GPs agree. An Australian Medical Association survey found 76% of doctors think the new system will not improve patient outcomes, and just 12% think it will.
Big brother. The government’s own figures suggest those saying No is likely to run into the millions. Surveillance and data matching is already widespread, and it is not used to help workers and the poor. The grossly flawed Centrelink debt collection system that earned it the nickname of “Robo-debt” is one example.
As the economy tanks, the gap between haves and have-nots widens. Faced with increased polarisation, the state ratchets up monitoring and powers to control the population. The threat of terrorism is racialised and exaggerated. Police are being given ever more powers, while democratic rights are eroded. This is the ever-more powerful and controlling state doing its job — protecting the ruling class.
It is no surprise that ordinary folks do not trust the state — we shouldn’t. It is not neutral, and it does not act in our interests — including its plans to implement a digital health record.
An online health record cannot compensate for problems arising from a fragmented system, where health services are often over-priced, rushed, disconnected, privatised and rationed. An IT solution will not provide the answer. What we need is a political solution. Get the profit motive out of healthcare and develop a planned and integrated system. Healthcare should be run by healthcare workers with input from patients. We also need to get rid of a system which stigmatises and criminalises health issues and fosters sexism, racism, homophobia and transphobia, all of which are built into the DNA of capitalism.
Opt out of My Health Record before 15 November and opt in today to the struggle to win a society focused on healthcare rather than profits.