After more than 15 years and $2 billion, the Federal Government has made its much-anticipated announcement that Australians will have from July 16 to October 15 to opt out before being handed an online health record, at a time of growing concerns about electronic data security.
The news comes as the Australian Competition and Consumer Commission says it will investigate claims by Oracle that Google is harvesting a gigabyte of data from Android phones each month, and weeks after the Federal Department of Human Services child support system suffered a four-day tech meltdown caused by the troubled transition from its post end-of-life Cuba system.
The Australian Digital Health Agency’s announcement also comes just days after the one-year anniversary of the WannaCry cyberattack that brought down global networks, including hospital IT systems across the UK, and in the wake of the Cambridge Analytica scandal that saw the user information of millions of people gleaned from Facebook in an attempt to sway the 2016 US election.
In a context of heightened awareness about the vulnerability of online information, every Australian will be provided with a My Health Record in November unless they take steps to opt out of the system during the three-month period.
Minister for Health Greg Hunt said the national electronic health repository allows allergies, medical conditions, treatments, medicines and test reports to be securely shared between clinicians and their patients, and empowers people to take greater control of the management of their health.
“My Health Record provides many benefits to patients, including reduced duplication of tests, better coordination of care for people with chronic and complex conditions, and better informed treatment decisions,” Hunt said.
Yesterday’s announcement follows the minister’s release on Friday of the framework for the secondary use of the data contained within My Health Record, which divulged that the medical information of Australians – including identified data – will be available for researchers and companies undertaking projects of public benefit.
The ADHA said in a statement that privacy and security of data are priorities for the agency.
“The protection of patient information is critical and the My Health Record system has strong safeguards in place to protect the health data. It is also subject to some of the strongest legislation in the world to prevent unauthorised use.”
But about 5.7 million people have so far opted in to MHR and a report by the Australian Information Commissioner found that 113 healthcare recipients were affected by unauthorised access of My Health Records by a third party in 2016-17.
An advertising blitz and support from Primary Health Networks, GP practices, pharmacies, hospitals and indigenous organisations will help to inform people about the benefits of digital health, as well as how to opt out via the My Health Record website or 1800 723 471.
According to the ADHA, Australians can cancel their MHR at any time after the end of the opt out period or create a record if they opted out during that time.
The Australian Medical Association, Royal College of Australian General Practitioners, Pharmacy Guild of Australia, Pharmaceutical Society of Australia, Australian Healthcare and Hospitals Association and the Consumers Health Forum back the MHR.
Consumers Health Forum chief executive Leanne Wells said My Health Record can play an important role in shifting health consumers from being passive patients to active partners in their own care. She also said the potential benefits of the secondary use of the data were large for the health system and the Australian public.
“There are, however, issues and concerns that remain to be addressed, especially enforcing laws protecting security and privacy, and ensuring robust and transparent rules and processes to govern access by law enforcement or other government agencies," Wells said.
For doctors, the current system of siloed medical records means clinicians can have access to incomplete information on a patient, especially if the patient has recently seen another specialist or been discharged from hospital.
“The My Health Record will result is doctors having access to better information, in a more timely fashion, via secure means. Less time chasing up paperwork means more time can be spent treating our patients,” AMA President Dr Michael Gannon said.
But Australian Healthcare and Hospitals Association CEO Alison Verhoeven said more work needs to be done for MHR to reach its clinical potential.
“While further work is required to fully integrate with hospital clinical information systems, My Health Record now offers a ‘medicines view’ showing patient medications and related information, and an increasing number of clinical documents such as referrals, shared health summaries and pathology and diagnostic imaging reports. This information will empower clinicians to make timely decisions in consultation with their patients,” Verhoeven said.
New MHRs will be activated when individuals log in for the first time or healthcare providers access the records.
“Strict privacy control, set by an individual, is a central feature of My Health Record. Each person can control the information in his or her My Health Record, and the healthcare provider organisations that can have access,” ADHA CEO Tim Kelsey said.
Shadow Health Minister Catherine King said while the Opposition supports My Health Record it has concerns about the government’s record on cybersecurity.
“Given this is the same Government that gave us census fail, stuffed up robodebt, and allowed Australians’ Medicare data to be sold on the darkweb, we have concerns about their ability to properly implement this reform,” she said.
“Put simply, this is a Government with a woeful track record on IT security and privacy. And now they’re asking all Australians to trust them with their most personal information.”
King also questioned the government’s decision to switch MHR to an opt-out system, saying it has made no real effort to explain the change to the community.
“The fact they tried to slip out the information about a three-month opt-out period late on a Monday afternoon suggests the Government intends to continue with this secretive approach.”
People will be able to exclude specific test results or other medical information from being added to their My Health Record by asking their healthcare provider not to upload it. They can also restrict access to information in their MHR through a Limited Access Code, or apply a Personal Access Code to the entire record.
The opt out stage will mark a milestone in the lengthy efforts of the government to create a national electronic health information warehouse, which began with the HealthConnect ehealth program in 2000. The National Electronic Health Transition Authority was set up in 2005 and in 2012 the Personally Controlled Electronic Health Record was introduced.
A 2014 review into the implementation and uptake of PCEHR recommended that NEHTA be scrapped and made recommendations to address shortcomings of the system and make it more effective for doctors and patients. Speaking at the HIMSS Australia Conference in Sydney at the time, the then-Minister for Health Peter Dutton said concerns identified in the report included low numbers of people choosing to opt in, the limited amount of clinically usable information, inadequate governance arrangements and the usability of the system.
In 2016, the ADHA took over responsibility for what by then had been rebadged as My Health Record.
The government’s decision to switch to an opt out system followed trials in the Nepean Blue Mountains region of New South Wales and Northern Queensland, and was endorsed by the COAG Health Council in August 2017.
HIMSS is the parent company of Healthcare IT News Australia.