The Health Information Exchange (HIE) is coming; the Australian Digital Health Agency (ADHA) has already outlined its HIE draft architecture and roadmap to deliver the seamless exchange of data among healthcare providers and improve patient care.
HIE will create the infrastructure needed to safely connect our digital health system, allowing doctors, nurses, pharmacists, allied health practitioners and patients to access and securely share medical information electronically.
Building a secure and electronic health infrastructure is a significant undertaking; building trust and confidence in the electronic sharing of health data is another major endeavour. Both enterprises require public engagement strategies.
Governments are familiar with the design, planning and roll-out of sizeable projects, infrastructure or otherwise. We can learn from past experiences and, when looking at successful stakeholder engagement for in-depth reform, the introduction of the GST in Australia comes to mind.
Back in the late 1980s, the Howard Government proposed a major reform in Australian taxation, a Goods & Services Tax (GST) to replace a tax system we were told was outdated. Cabinet papers released years later show that the Government was concerned about how well Australians understood the workings of the tax systems and the principles of GST, so they allocated millions of dollars on advertising and education.
They also sought support from sections of society that were considered oppositional to this massive change, including the business and welfare sectors.
The GST campaign was an exceptionally sophisticated communications campaign that engaged with Australians to gain their trust and support. To do this, the Government of the day had a strategy of educating and informing the public, and the media specifically, about the complicated taxation changes.
Over $35 million was spent on advertising, which included using the Joe Cocker song, ‘Unchain My Heart’ in a series of slick adverts. Looking back two decades later, removed from the political fights over this communications campaign, we see the GST is accepted and successfully integrated.
The strategy and campaign had a significant effect on gaining public backing for reforms.
A similar national campaign is needed for HIE specifically and the use of AI and digital health in general.
The foundations appear solid for a shift to a digitally enabled health system: Australia is ranked among the top nations for smartphone adoption and internet usage, we took to online banking and contactless payment systems faster than most other counties; and we are ranked very high for use of social media, streaming services and online shopping.
Australia has high rates of connectivity and widespread internet access, a statistically wealthy population with high disposable incomes, and we are ‘tech-savvy’ too – we embrace new platforms and trends earlier than others.
Yet, we cannot assume that our quick adoption of technology indicates a similar approach to sharing digital health data. It is too early to tell how the Government’s modernisation of My Health Record will be received – it will be a useful insight into public attitudes, and how they go about promoting it.
The GST campaign was successful because there was information and answers to every question and every scenario, and this information was not just found on government websites – they used every available medium to inform the public. Everyone knew, or could find out, how this substantial reform would affect them, when and how it would happen.
There is still so much uncertainty around health data. GPs have expressed concerns that the primary care sector is not ready yet. What does default sharing of data mean for GPs and their patients? Which data will be accessible through the HIE? Do GPs understand how information in the system connects?
Why is hospital and GP health data seemingly accessed differently? Do we know to what extent doctors and patients want their data shared, or are we assuming they understand the benefits? More importantly, is the value of the HIE understood in terms of health outcomes by health professionals and patients?
Involvement with My Health Records and data sharing is still very low; there are available health technologies not being used properly to improve patient care.
Another similarity with the GST is that most Australians understand taxation, even if they are not familiar with tax law and collection. Likewise, most of us know a bit about digital health and health information sharing.
However, the difference today is distrust, especially distrust in sharing of private health information and AI. Distrust, fear, ignorance – the level of scepticism about government ‘control’ of personal data and privacy varies, but it has been heightened by Covid-19 and a visible rise of prominent anti-vaxxers.
Last year, Pew Research Center reported that 60 per cent of adults in the United States expressed discomfort with healthcare providers relying on AI for diagnosis and treatment recommendations. A third of respondents – 33 per cent – said AI could worsen care quality.
A survey by the Centre for the Governance of AI2 found overwhelming agreement (91 per cent) across the United States and Europe that AI needs ‘careful management’. The Centre concluded that their survey reflected growing concerns that AI developers, legislators, researchers, and society in general have a challenge to figure out the proper management and regulation of AI technology to satisfy public concerns.
No doubt, increasing incidents of cyberattacks and data breaches make many people wary of sharing their sensitive health data; hence the need to explain how HIE and My Health Record uses, stores, and manages health data.
AI, however, takes fear and distrust to another level. The “black box” of AI, where users are not fully aware or even understand how AI algorithms work and the process of artificial decision making can erode trust.
Recently, it was reported in the media that some viewers simply did not believe photographs depicting horrific floods in Europe; they refused to believe the images were not the result of AI or digital manipulation. This presents a huge dilemma and challenge.
AI in healthcare is not infallible. Biases in AI can cause unequal or inequitable outcomes. There are mistakes in diagnosis and treatment recommendations, and not all health monitoring devices and health apps are properly regulated or validated.
Again, we could look to the GST campaign, which sought to include ‘oppositional’ groups. This could include medical associations anxious over job losses from AI; and those who fear the misuse of their health data.
The finance and transport sectors have been revolutionised by digital technologies and AI, overwhelmingly to the benefit of users. It is a transactional arrangement we recognise – the benefits of online banking, shopping and booking transport and accommodation outweigh other concerns.
We know that those not familiar or confident with technology or do not have access to digital technologies are more likely to distrust these systems and process that use their health information. There will also be cohorts who are excluded for a variety of reasons: literacy, socio-economic, geographic, culture or even scepticism of digital health technologies.
The way forward is for governments to enact strategies that build trust and confidence in digital health technologies, AI and health data usage among these groups.
A refined communications strategy that clearly communicates HIE, My Health Record, digital technologies and AI systems will arguably mitigate known concerns. Increased knowledge about health data and the value of health information sharing will smooth the adoption of HIE and My Health Record. We must listen and address any worries and fears.
It should go without saying that governments and the health sector must prioritise health data security and implement robust cybersecurity measures to protect health consumers data. Australia also needs to upgrade and amend its privacy laws and ethical guardrails – again, information that requires effective communication and education.
The final piece is education and training. We know that there are huge gaps in understanding AI and digital health literacy within the health workforce. Delivering digital capability training to GPs, clinicians, nurses, allied health practitioners and administrators so they fully understand digital health technologies and their ethical use builds confidence and trust that is imparted to patients and health consumers.
Although the Australian public is becoming more aware of digital health and the role of AI in healthcare, knowledge and confidence varies. Strategically, if we are to adopt and adapt quickly, we need the type of encompassing and far-reaching communications, education and training to build trust and facilitate its integration into healthcare systems.
Anja Nikolic is the CEO of the Australasian Institute of Digital Health (AIDH).
