Wells also identified that with AI and other technologies aiming to modernise healthcare, there is a need for legislators and policy makers to be more vigilant of securing these technologies. If and when data breaches happen, they need to look for continual ways of staying ahead of the game to protect consumer information.
Although digital health advances promise to transform how much control patients have over their healthcare, it would be a mistake to assume all patients want high levels of control, a conference has heard.
Digital health professionals gathered in Brisbane over the past two days at HIMSS AsiaPac18, joining a session on patient activation, consumer privacy issues and security issues.
Australia Consumers Health Forum CEO Leanne Wells told delegates the consumer revolution in Australia is already seeing some hospitals move away from traditional practices and setting their own standards to get patients involved as partners in care.
“When it comes to patients realising their role in care, they now have a sense of control over their health plans and decisions made in consultations with them, giving them so much more access over their clinical pathways and outcomes,” she said.
However, Wells said Australians have to be aware of the digital divide, as consumers segment highly.
“Digital health is nothing more than just an enabler to people’s experience of a system, their capacity to self manage or be health-savvy. We shouldn’t make the assumptions that everyone is the same and all want to use the tools available to build on their health footprint,” Wells said.
“We do have to pay attention to the existence of the My Health Record here, in Australia, and the ability for Australians to opt out of it if they want to because of privacy and security concerns; anything about having a digital license needs to have a social license.”
[Read more: How patient demand is set to become an overwhelming driver of digital health | Is blockchain feasible for the healthcare sector?]
According to Wells, consumer attitudes to health data are strongly affiliated with the governance of a citizen’s information.
“We recently did a major research study with NPS Medicinewise, and some of the findings showed that citizens overwhelmingly wanted more control of their own health data because there’s nothing else that’s more personal,” she said.
“It also showed that their concerns were about stigma, but also that they were happy for that information to be used to create better, coordinated healthcare across and between clinical care teams, in addition to research and other public good uses.”
“In the event of a breach, the expectation would and should be that there is frankness, honesty, transparency and accountability in alerting consumers,” she said.
“It’s about due diligence once a breach has happened and being open about what system improvements can be looked at to improve their security.”
[Read more: Senate inquiry calls for My Health Record changes including default PIN codes and year-long opt out extension | SA Health staff caught spying on patient records and 7000 children’s pathology results exposed online]
She added that the industry should take a benefits-versus-risks approach to the digitisation of patient information to improve consumer adoption of digital records and to look beyond just the possible negatives of digitisation.
“Yes, there are risks when digitising medical records and with new technologies being involved but let’s balance that out with the enormous benefits that can come from a shared record,” Wells said.
HIMSS is the parent company of HITNA.