Tuesday, May 31, 2016

I Wonder Why We See Such Angst Regarding Telstra Working On The National Cancer Screening Register.

This announcement appeared a few days ago.

National Cancer Screening Register

Following a competitive tender process that commenced on 10 August last year, the Federal Department of Health has appointed Telstra Health to develop and operate the new National Cancer Screening Register.
Page last updated: 26 May 2016
26 May 2016
Following a competitive tender process that commenced on 10 August last year, the Federal Department of Health has appointed Telstra Health to develop and operate the new National Cancer Screening Register (the Register), which will support the renewed National Cervical Screening Program and the expansion of the National Bowel Cancer Screening Program.
The commitment to establish a national cancer screening register was first announced in the 2015-16 Budget. Following a detailed Request for Tender (RFT) process, a contract for the service provider was signed on the 4th May 2016.
The Department of Health will now work with Telstra Health to implement the Register. There will also be significant collaboration with the Department of Human Services and the state and territory governments to transition nine separate cancer screening 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.
The register will be established under national legislation and the data included in the register continue will be owned by the Commonwealth (Health Department) and cannot be used for any other purpose. Any misuse of data could be an offence under the Criminal Code. All data are subject to privacy laws such that only personal information that is directly related to the Register may be collected, used and disclosed.
It should also be noted that the core software on which the Register will be built is already in use in Australian clinical settings and has built-in provisions to protect and hold patient and clinical information securely. All data will be stored in Australia in secure data storage facilities.
The Department of Human Services was eligible to participate in the tender, but did not apply.
Here is the link:
Within a day or so of this appearing we had panicked articles like the following.

Telstra attacked over $220 million cancer screening register contract win

The Federal Government has awarded a contract - estimated to be worth up to $220 million - to Telstra Health to construct and manage a new National Cancer Screening Register, a decision which has been attacked by union peak body the ACTU and not-for-profit Group, Pro Bono Australia, in defence of a Not For Profit which unsuccessfully tendered for the contract.
Under the five-year contract tendered by the Department of Health Services, Telstra Health’s growing health services business will develop the national bowel cancer register, as well as eight state and territory based cervical cancer registers, into a single digital cancer screening register.
Critics, including some in the healthcare sector, have raised data privacy and governance issues over the awarding of the contract to Telstra, although under the contract the government will retain ownership of the intellectual property and data stored on the new register, which is expected to start operating in the first half of 2017.
But, the ACTU has attacked the decision, accusing the Government of turning over a “sensitive national cancer screening register”, and claiming it is just the first step in the “selling-off of Australia’s public medical records system to corporate operators”.
More here:
and here:

Health consumer groups warn Telstra could profit from cancer register

Date May 26, 2016 - 5:29PM

Jane Lee

Legal affairs, health and science reporter

Public health and consumer groups have questioned whether Telstra and other private companies could profit from millions of Australians' cancer screening records.
Fairfax Media has reported that Telstra Health - a division of the listed company - has been awarded a government contract to manage a new national cancer screening register next year.
The register - merging data from nine non-profit run registers - will allow GPs to access a single record of their patients' cervical and bowel cancer screening history. It will also show their eligibility for future tests from next May. 
Telstra Health's managing director, Shane Solomon, said this would make it easier for patients to keep up to date with upcoming screenings through mail and potentially mobile text messages, and would overcome duplication when people changed doctors or moved interstate.
The Department of Health released a statement on Thursday to assuage privacy concerns, saying federal laws would ensure that "the data included in the register (will) continue to be owned by the Commonwealth and cannot be used for any other purpose".
Mr Solomon said Telstra would not charge for access to data and denied that it could be used to help develop the company's products.
The company said in a statement that people would be allowed to access their own records online, and that their GPs would need consent to do so.
Yet consumer health groups warned more information was needed about how the contract protected patient records from commercial gain.
Alison Verhoeven, chief executive officer of the Australian Healthcare and Hospitals Association said that while the register could increase the number of people screened for cancer, it was unknown who would control access to the data and publish public reports.
Ms Verhoeven said she was concerned that  "a proliferation of private organisations could be housing data many of us hold dear in a commercial environment over which there is very little control and capacity to contribute to."
More here:
and here:
Thursday, 26th May 2016 at 11:15 am

Telstra Health Wins Multi-Million-Dollar Contract Over NFPs

Telecommunications giant Telstra has been chosen over Not for Profits to be awarded a multi-million-dollar contract to manage a new National Cancer Screening Register (NCSR) in a move some members of the public have called “privatisation by stealth”.
The contract, which has reportedly been allocated $178.3 million over five years, is expected to be announced by Health Minister Sussan Ley on Thursday.
The controversial move – which follows a public tender call which closed on 8 October 2015 –  will see sensitive medical records placed under corporate management and signals an end to the current state-based registers for cervical cancer screening programs and the national bowel cancer screening register.
Previously the responsibility of compiling and maintaining the registers had fallen to state-based Not for Profit organisations, including the Victorian Cytology Service which was overlooked for the national contract in favour of Telstra, despite its experience in the field.
Fairfax Media has reported that Telstra Health has approached VCS for access to its expertise, staff, and other resources.
VCS Associate Professor Marion Saville said they were disappointed with the decision.
“We can confirm that VCS was shortlisted for the NCSR. We are of course very disappointed in the outcome of the tender process considering our longstanding expertise in operating successful cancer screening registers,” Saville said.
“As an organisation we will continue to work constructively towards the goal of protecting Australians from the impact of cancer through screening.
More here:
It seems to me that all these complaints are either sour grapes from organisations that missed out on the work or are from individuals who have not realised that there are clear plans in place to protect personal information and that already their myHR information is probably in the hands of commercial for-profit contractors such as Accenture.
With the protections outlined in the press release it seems to me all this is hysterical over-reaction from individuals who don’t understand how careful and risk averse the DoH is! The system is being developed by people who already operate patient registries and are fully aware of the sensitivity of the information and the risks to their reputation (and their clients) if something goes wrong. Additionally the whole program is being led by and academic cancer clinician who knows both the risks and the benefits of what is being done.
Of course, virtually all your private information is already controlled by people in the private sector such as GPs, Google, Banks and so it goes on. As our Reserve Bank Governor said recently I reckon people should possibly ‘chill out’.
Let’s just wait till be see what emerges before becoming anxious and concerned!


Bernard Robertson-Dunn said...


I agree with you, except for one small phrase:

"... it seems to me all this is hysterical over-reaction from individuals who don’t understand how careful and risk averse the DoH is!"

I think "how careful and risk averse parts of the DoH are" is more appropriate. The register integration is being undertaken by the Population Health Division, not the eHealth group.

I've seen reports that patients will be able to log on and see their register record. I'm not sure that's a good idea - going through their GP and not attaching the system to the internet would make things simpler and safer.

Anonymous said...

"Election 2016: Telstra wins contract to manage your health records"

"Fairfax Media has been told Telstra Health had since made overtures to Victoria Cytology Service for access to its expertise, staff, and other resources to enable it to get the new national register up and running by May 1, 2017."

So did Telstra Health misrepresent their capabilities? Did they get this project as part of a bailout on their lame duck investments? Remember the article:
"Is Telstra Health a lame duck? Connect the dots"

I am sure it is still good news for shareholders, big and small!

For the rest of us taxpayers, get ready for project blow out folks...

Trevor3130 said...

Nice one, David. Hope you didn't bite your tongue while you wrote that. Keep wondering!
I especially liked the line about the Govt owning the data. Think of all those bits & bytes under secure lock and key. The contracts will be revealed for all to peruse, no doubt.

Eric Browne said...

David, Thanks for raising this and giving readers the opportunity to comment. It is an area about which I have considerable interest and some experience.

There are several concerns I'm aware of that people have with the announcement of a centralised, privatised cancer screening registry and the awarding of the contract to Telstra Health.

Firstly, a national repository is seen as a two edged sword. Probably the majority of people affected by cancer or potentially affected by cancer would wish the information about their condition to be used anonymously for research that might lead to improving diagnoses and treatments. On the other hand, they would not like identifiable information to fall into the "wrong hands” and be used against their own interests. A centralised comprehensive registry has the potential to sharpen both edges of the sword.

Secondly, DoHA's tender documents paid little heed to either edge of the sword, e.g. "All Data collected in the Register shall be managed in a single master repository for use in gaining intelligence for National Cancer Screening Programs.” There is no requirement for sophistication in the specified architecture or data storage that separates identifying data such as name, sex, data of birth, contact details etc. from clinical data.

Thirdly, outsourcing the build and management to a private company would be seen by many, rightly or wrongly, as opening the doors to further privatisation of government services, particularly health services more broadly and moving towards an American style healthcare system.

Forthly, there are concerns related specifically to Telstra Health and its links through its Commercial & Strategy Director Tim Kelsey and the UK's Dr Foster to the controversal Care.data project in the UK. I refer you and your readers to the Computer World UK article <a href="http://www.computerworlduk.com/careers/meet-man-behind-caredata-tim-kelsey-3621691/“ >http://www.computerworlduk.com/careers/meet-man-behind-caredata-tim-kelsey-3621691/</a>

I am not from an organisation that missed out on the work. I do belong to an organisation that advocates for the interests of people affected by cancer.

Anonymous said...

It would be nice to see some assurances that standards will be used and Telstra won't use this to force people to use their software everywhere. I am not sure if an open architecture has been specified or how well thought out this process has been? Does any one know?

Bernard Robertson-Dunn said...

Now there's a good idea. An open, health information architecture that would facilitate and enable health applications and data sources to talk to each other securely and reliably, discover relevant data about patients, manage information according to clinical need, control access on a need-to-know basis, be vendor neutral, extensible and resilient, and encourage innovation in the delivery of health care outcomes.

It seems so obvious, I wonder why it wasn't thought of years ago?

Grahame Grieve said...

@Eric: "On the other hand, they would not like identifiable information to fall into the "wrong hands” and be used against their own interests"

In the USA, that almost always means, 'I won't be able to get/change jobs because I'll fail the insurance pre-existing disease check'. Not so much here though.

What do you think of when you say 'used against their own interests', and can you nominate any examples of that actually happening here in Australia in the past?

Eric Browne said...

@Grahame: "What do you think of when you say 'used against their own interests', and can you nominate any examples of that actually happening here in Australia in the past?”

There are plenty of examples of discrimination against people who have been diagnosed with cancer. Often it relates to difficulty returning to work, or obtaining financial support or insurance - even travel insurance. It is not universal and I’ve known examples where companies or organisational groups have gone to extraordinary lengths to help employees and/or their families facing cancer.

MJA published a paper on discrimination related to genetic test findings by Keogh and Otlowski in 2013.

I’m not aware of any cases in Australia of screening results “falling into the wrong hands” through unwarranted disclosure ( deliberate or otherwise ) from screening registries. I think the likelihood is low, but not zero. Concerns around genetic test results, though not covered initially by the Telstra registry contract as far as I know, would be a factor that should be included in the project.