On the eve of the introduction of what is being heralded as the world’s strongest consumer data protection law in the European Union, the Australian Digital Health Agency’s CEO Tim Kelsey claimed signing Australians up to My Health Record unless they opt out could be a global innovation in consumer empowerment.
In his address to the National Press Club yesterday, Kelsey described My Health Record as a “fully consent-based system” and said its consumer controls were unprecedented.
“My Health Record is not the only summary care record system in the world, but it is unprecedented for the way in which it provides the consumer with such comprehensive control of their medical information. The legislators in my opinion should be applauded,” Kelsey said.
The EU’s General Data Protection Regulation – described as a watershed in providing consumers with tight data privacy rights – comes into effect today and requires organisations to receive consent from consumers before collecting their data.
According to the legislation, the highest-possible privacy settings must also be used by default, and data can only be shared to make services for individuals work.
Within the context of GDPR’s aim of empowering individuals to own, protect and control the use of their personal data, Kelsey claimed the Federal Government’s decision to automatically provide a My Health Record to all those who don’t opt out during the three months from July 16 was an important step forward.
“My Health Record has the potential to be a global innovation in consumer empowerment in health and well-being.”
Kelsey said that switching MHR from an opt in arrangement to opt out was based on evidence from trials in NSW and Queensland, and there was “no conspiracy” to secretly sign people up. He claimed $100 million would be invested in a communications campaign to inform Australians about the national repository of health data and how they could bow out of the system.
“There's no national opt out rate target or anything. My job is to make sure that everybody is aware of their rights to opt out and has been able at exercise them. So, no conspiracy. We are very transparently going to be explaining to all Australians what those rights are in ways that are suitable and in ways that they want us to.”
The campaign will exclude national television and radio advertising, and letters to households, but will get the information out via 15,000 healthcare locations including general practices, pharmacies, public and private hospitals, and Aboriginal health services, and through partners such as the National Farmers Federation, the Federation of Ethnic Communities Councils of Australia and Australia Post.
Kelsey also said the “consumer controlled” My Health Record would allow people to set their own PIN numbers and access controls.
“There is no Big Brother.”
Evaluation of the opt out trials found that less than 1 per cent of those who had been provided with a My Health Record had set a PIN number, while almost half were unaware they had a MHR.
Kelsey’s address came as new research found that Australians overwhelmingly want control of their health data and expect to be asked to provide consent for it to be used by government, companies or researchers.
According to the Engaging Consumers in their Health Data Journey report published by the Consumers Health Forum and NPS MedicineWise this week, 89.9 per cent believed the information they tell their health practitioners is confidential and 81.5 per cent said they want their doctor to ask consent before sharing it electronically on a shared online platform such as My Health Record.
Most consumers (70 per cent) agreed that their primary treating team should have access to their health data, but 86.7 per cent said they want to be able to provide permission each time an organisation wants to use their data, especially private organisations (94.3 per cent).
Kelsey told the National Press Club audience that by the end of 2018 Australia will be the first country of its size to provide a mobile My Health Record to every citizen unless they choose to opt out.
“This is not a technology strategy, but a human imperative to improve the health and well-being of every person in Australia. Besides the skill and commitment of its extraordinary clinical workforce, digital technology will be the most important enabler of high-quality sustainable health and care in Australia.”
He said a series of ongoing design improvements will be introduced to allow aged care services to be connected across the country and information about implanted medical devices to be uploaded.
“I should say now that we are at a start of a journey. The history of technology in healthcare has been very mixed. We must manage our expectations. Technology has transformed other industries; the airlines, finance. It will change the experience of healthcare, but this will take time and patience. This is an evolution much more than a revolution.”
Recognising some resistance to digital health technologies, including among medical professionals, Kelsey said cultural change was required.
“We do have to recognise that at the heart of all this we have a significant cultural challenge like everything. Technology is nothing, and culture is everything. In the Australian community of very dedicated, hardworking care providers there are a large number that have not invested in computers.”
But the digital health evangelist claimed that despite the challenges of the past, high tech innovation in healthcare will be built on the foundations being established now.
“The story of technology and healthcare over the last 10 years has not always been a good one, but it is the fastest growing social investment in most countries in the world,” Kelsey said.
“New technologies will change our world quickly, but they will only flourish if the digital basics are in place in our health services. If the world is full of faxes, it will not be full of precision medicine.”