Labor Opposes Telstra’s Control of Cancer Register

For-profit companies should be prevented from running the register of cancer histories, according to Shadow Health Minister Catherine King, who has launched an attack on the government over its decision to award the $220 million contract to a telecommunications giant.

King announced on Tuesday night that Labor would fight the government’s decision to hand over the running of the new National Cancer Screening Register to Telstra, in a move that would see sensitive medical records placed under corporate management.

She raised concerns over a corporation handling “private and intimate health data that is usually only disclosed between a person and their GP” and introduced amendments to legislation that could see Telstra lose the tender.

“While Labor supports the introduction of the National Cancer Screening Register, we have serious concerns about the risks of giving Australians’ most sensitive health data to a telecommunications corporation that has never managed a register like this,” King said.

“Why is the government determined to hand a for-profit provider control of Australians’ most intimate health information, such as results of pap smears that allow inferences about a person’s sexual status?

“In just another example of Malcolm Turnbull’s determination to privatise our health system, the government has put Australians’ Medicare numbers and Medicare claims information in the hands of a multinational telecommunications corporation.”

The Department of Health announced in May, it had awarded the contract to establish and operate the register, which will replace nine existing registers including the states’ cervical cancer register, to Telstra for an initial term of five years with an option for a 10-year extension.

King accused the government of rushing the legislation after “signing on the dotted line to hand pap smear and bowel cancer results to Telstra” on the eve of the federal election.

“The government signed the contract despite no legislation having been passed to establish the national register, and they are now trying to rush through legislation without giving Parliament the time to properly consider the implications of their hushed deal,” she said.

The National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016 are currently before the House of Representatives.

King has introduced amendments that “make it clear” the new National Cancer Screening Register can only be operated by a government or Not for Profit organisation to “ensure that the integrity and intention of the register is protected”.

Alison Verhoeven, the chief executive of the peak body for public and Not for Profit hospitals, the Australian Healthcare and Hospitals Association (AHHA), told Pro Bono Australia News it was “very appropriate” for Labor to call for a Senate inquiry into the awarding of the contract to Telstra Health.

“There are some questions around for example Telstra Health’s experience in running registries,”  Verhoeven said.

“It would seem to me that one of the criterion for selecting whoever this should have been outsourced to would have been demonstrated expertise and experience, so it does call into question whether that was part of the tender criteria.

“No doubt there were criterion about costs, there were probably criterion about technological innovation and it may well have been that Telstra Health was the superior bidder for those criteria, but it would be really good for that to be understood and debated.

“I think Senate inquiry is the appropriate way to deal with a tender of this magnitude, dealing with this sort of sensitive data, important data for understanding of Australia’s health and importantly this contact it is a very long contract, five years with an opportunity to extend for 10 years is a very long period of time for data to be held with a particular contractor. So it is important that it is a defensible decision.

“We want to be sure that data governance arrangements are in place, not just via legislation but actually the architecture of the registry, the technical infrastructure at Telstra Health, the expertise of the individuals actually running the cancer registry, all align to ensure Australians can have confidence that data are going to be governed properly, that they are going to be securely held.

“But that they are also going to be appropriately made available for research and for the general public to be able to access in the identified manner, in order to be able to understand the incidents of cancer in our society, the way we fund the care of people with cancer, what it means in terms of our health funding and our system organisation.”

Verhoeven said the government should welcome the opportunity to be transparent.

“So there are lots of issues to be explored, unfortunately the tender arrangements and the contractual arrangements with Telstra Health aren’t publicly available so it is very difficult to understand how they are going to lead this work. And because they don’t have established health registry businesses we can’t understand the way they will manage the work in the same way that other established health statistical collections are managed,” she said.

“So I think it is really important for the government to communicate this, it is an opportunity through a senate enquiry to air some of those issues and have some understanding about it.

“If I was the government I would actually welcome the opportunity to be transparent about it too. Because if they have made a good decision it is one that they should be happy to have exposed to the public.”

She said the issue of Telstra being a for-profit was not “a critical definer” as to their capacity to run the register as long as there were appropriate security arrangements in place.

“What is critical is that they have the appropriate governance and security arrangements in place, that there are contractual arrangements with the Commonwealth that ensure that those are managed very carefully,” she said.

“For example the Australian Institute of Health and Welfare, its legislation actually provides for prison term for anyone who breaches matters that are defined in the legislation, I understand the legislation around the cancer registry provides only for fairly minor fines, I think it is up $22,000, which if you’re a company like Telstra Health, to be fined $22,000 is not actually a very big deal.

“I don’t know that that sort of punitive arrangement in the legislation would give me much confidence that would necessarily serve as a really good stick for an organisation like Telstra Health.”

A spokeswoman for the Federal Department of Health told Pro Bono Australia News the decision to appoint Telstra Health followed a competitive tender process that commenced on 10 August last year.

“Teams from Information Technology and Population Health and Sport Divisions will now work with Telstra Health to implement the register,” she said.

“There will also be significant collaboration with our colleagues in the Department of Human Services and the state and territory governments to transition nine separate cancer registers into a single National Cancer Screening Register.

“The register is expected to be operational to align with the commencement of the renewed National Cervical Screening Program on 1 May 2017.

“The Register will create a single view for Australians participating in cervical and bowel cancer screening, meaning for the first time: one record for each participant.

“By integrating the Register with GPs’ desktops, GPs will be able to identify patients’ screening eligibility and history to support real time clinical decision making. Health professionals, including pathology providers, will have improved access to their patients’ information.

“It is estimated that over the next four years, streamlined invitation and reporting will benefit approximately 1.4 million women aged 25 to 74 years (both HPV vaccinated and unvaccinated), who will be invited to participate in cervical screening and almost 10 million eligible Australians aged 50 to 74 years, who will be invited to participate in bowel screening.”

Telstra declined to comment.