Over the last two days a Senate inquiry has delved into the government's plans to roll-out a 16-digit national healthcare identifier for the majority of Australians, with the main obstacle many parties saw to implementation still being privacy.
The inquiry will hand in a report next week which will help inform debate in the Senate over the Bill.
Health Minister Nicola Roxon referred the Bill to a Senate Committee late February due to high levels of community interest.
The Australian Privacy Foundation, the Public Interest Advocacy Centre and the Cyberspace Law and Policy Centre in the law faculty at the UNSW all spoke at the inquiry.
Dr Juanita Fernando, chair of the health subcommittee for the Australian Privacy Foundation, said that her research showed healthcare workers shared log-on details and that there were no penalties to stop this from happening.
"When you talk to doctors, nurses and allied healthcare workers they are quite frank about the fact that they share log-on details," she said. "What happens is that one clinician downloads a whole range of patient records for a coherent view, to know everything about a particular patient's health condition."
She said that the healthcare identifier system would end up making things "worse" than the current system because the identifier was "going to provide a way to index all of that information".
Robin Banks, chief executive officer of the Public Interest Advocacy Centre, said that the Bill was "underdone" in the area of consumer rights and protection of data.
"Healthcare recipients seem to be on the periphery of the design of the scheme and have very few express rights," said Banks. "There is also very little comfort, I think, for consumers to be gained from the limited information security obligations."
Banks said that from her organisation's point of view, more needed to be done to ensure that the legislation was "in step" with current privacy reforms for which the government has been developing exposure draft legislation.
She said that without those laws "not only does the legislation risk undermining the development of effective electronic health records, but also a loss of trust in this area will inevitably flow to other aspects of government operations, not only in health but beyond".
I consider that this Bill should be rejected in its current form until the full package is presented to the parliament.
Professor Graham Greenleaf
"A failure to protect such core information as consumer health information can only spread a lack of confidence in government more broadly."
Professor Graham Greenleaf from the UNSW Cyberspace Law and Policy Centre said that the "fundamental problem" with this Bill was its "incompleteness".
"It covers a small but central element of a much broader health identification and surveillance system, including the crucial element of electronic health records," he said.
In his view, the Senate and the Parliament was being put in an "unreasonable position" of being required to consider the Bill in "isolation" from the full system that the government is proposing to implement.
He said it therefore made it "unreasonably difficult" to "adequately assess" whether the safeguards in the Bill were "sufficient or effective".
"For that reason I consider that this Bill should be rejected in its current form until the full package is presented to the parliament," he said. "I cannot see any significant adverse consequences coming from delaying this Bill until you have the full picture in front of you."
However, there was also a great deal of support for the required legislation to be passed. The Department of Health and Ageing said the Bill had to be passed as a necessary "building block" for the government's plans to be considered by the Council of Australian Governments in order for a national electronic health record strategy to be implemented.
Federal Secretary of the Australian Nursing Federation Ged Kearney said that there were more problems with privacy in the paper-based system than in the electronic alternative being suggested by the government. "I certainly understand the concerns but, from my perspective as an old nurse who has come from the paper system, my very broad view is that there are actually more safeguards in this simply because access can be audited and traced," she said.
"Right now, with the paper system, files get carried from pillar to post, dropped on desks and dropped in lifts — nobody knows who has looked at a file or what information has been gleaned from it. So we are looking forward to, if anything, more safeguards. That is our very broad view at this stage.
"My members and I are a little flummoxed by the concerns about privacy. At the moment, as some of you will know, the lack of privacy around paper records is a huge concern to us as health professionals, particularly in the public health system and the aged-care system. We are actually looking forward to the extra safeguards that we think an electronic system could provide for our patients," she concluded.
The Australian Privacy foundation chair Karen Curtis said that her office had been involved in the legislation underpinning the creation of the identifiers and had commented on early stages of legislation.
"We consider the current Bills include appropriate privacy safeguards. In particular, I note that the Bills clearly set out the purposes for which healthcare identifiers can be collected, used and disclosed, and limit those purposes to activities related to managing or communicating health information in a healthcare context. They impose obligations on healthcare providers, the health identifier service operator and other entities to keep healthcare identifiers and the information associated with them secure."
The legislation also enabled the Office of the Privacy Commissioner proactive oversight powers. The government has allocated it $500,000 a year for the next two years to carry out that role. There would also be a review of the legislation after a few years. "So there are a number of reasons for us thinking there are sufficient privacy safeguards while media reports and submissions by others have suggested otherwise," Curtis said.
However, Greenleaf said that despite recent reports of privacy breaches in Medicare, the commissioner had not been active in enforcing privacy in the medical system.
"Unfortunately, I think we have a non-functioning privacy enforcement system in Australia at the moment because the current commissioner has not made one single determination under section 52 enforcing any right in any complaint either under the term of the current government or the previous government," he said.
Right now, with the paper system, files get carried from pillar to post, dropped on desks and dropped in lifts.
"We do not have a privacy law system that anyone out there in the community takes very seriously. That is a problem when you talk about who is taking responsibility for major systems like this. There are few repercussions if you get things wrong in Australia at present, so there is not as much pressure toward accountability and responsibility as there should be."
Other concerns raised in the inquiry included incentives for healthcare providers to take up the system. Australian Medical Association president Dr Andrew Pesce said that certain internal costs would have to be met by medical practices. He said the costs were often borne in other locations to where the benefits were realised.
"[General practitioners] will have to bear costs in terms of software upgrades and training to get hold of the patient identifiers, but other systems, such as pathology systems, radiology systems, will benefit from that investment," he said. "They will also have their own costs, but those benefits from the general practice system will flow through to the rest of the e-health system."
The Department of Health and Ageing conceded that costs to healthcare providers would vary "significantly", but said no government funding had been agreed to.
"Our view is that it will vary significantly depending on the type of organisation, the type of systems they will be using, the size of the organisation and the approach they will be taking to adopt identifiers," said Kerry Flanagan, acting deputy secretary, Department of Health and Ageing.
"Upgrades of systems are pretty much par for the course for organisations that are using IT systems to administer their services and to maintain patient records, so the introduction of identifiers may well be picked up as part of that regular upgrade process."
Flanagan said the issue was under continued discussion. "We have programs within the department that we have been using for a number of years to assist the primary care sector to adopt and improve their capability in e-health," he said.