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Community Affairs Legislation Committee
National Cancer Screening Register Bill 2016 National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016
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Community Affairs Legislation Committee
Siewert, Sen Rachel
Watt, Sen Murray
Cameron, Sen Doug
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Community Affairs Legislation Committee
(Senate-Thursday, 29 September 2016)
ACTING CHAIR (Senator Reynolds)
- Senator McALLISTER
Content WindowCommunity Affairs Legislation Committee
National Cancer Screening Register Bill 2016 National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016
VERHOEVEN, Ms Alison, Chief Executive, Australian Healthcare and Hospitals Association
[14: 3 9]
Evidence was taken via teleconference—
ACTING CHAIR: I now welcome, via teleconference, Ms Alison Verhoeven of the Australian Healthcare and Hospital Association. Can you confirm for the committee that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you?
Ms Verhoeven : Yes, that information has been provided to me.
ACTING CHAIR: Thank you. The committee does have your submission and we thank you for that. I now invite you to make a short opening statement. At the conclusion of your remarks, I will invite members of the committee to put questions to you. Over to you.
Ms Verhoeven : Thank you, Senator Reynolds. The AHHA welcomes the opportunity to address this inquiry. We are Australia's national peak body for public and not-for-profit hospitals and healthcare providers and have a particular interest in universal high-quality health care to benefit the whole community. We welcome the investment in and development of the National Cancer Screening Register as an important national health data resource. We believe this will contribute to better health outcomes and will also support research and health policy development. However, we believe that it is imperative that data governance and security arrangements are in place and managed very carefully. With regard to the awarding of a tender of this magnitude, which deals with very sensitive and nationally important data over a period of up to 15 years, we believe it is very important that the Commonwealth government is transparent with the public, the health sector and consumers on its decision-making process, so we welcome the role of this committee in investigating those matters.
There are a number of issues that we are concerned about and we have brought to the attention of the committee in our submission. I will not go through those in detail, other than to briefly say that we believe the Commonwealth has to be forthcoming on the anticipated costs or savings that are associated with moving away from the nine existing registers to the new register and its outsourcing to a for-profit provider. We also believe the Commonwealth should be addressing a number of key concerns related to data. The rationale for the exclusion of the current state and territory based breast cancer registers is one issue; however, the new national register fits in with Cancer Australia's 2008 national cancer data strategy, the proposed data governance arrangements, the need for appropriate penalties for data and security breaches, the need for, we believe, mandatory data breach notification and the need for data to be made available appropriately to researchers, clinicians and policymakers.
I note that the Department of Health has made a submission to this committee, has provided responses to some of these concerns and has provided details of a privacy impact assessment which was undertaken after the tender was awarded. The Office of the Australian Information Commissioner has also made a number of recommendations in its submission, and the AHHA encourages this committee to consider support for the Information Commissioner's recommendation and also for the recommendations that came out of the privacy impact assessment as noted in the Department of Health's submission. Thank you.
ACTING CHAIR: Thank you very much.
Senator SIEWERT: Firstly I want to go to the recommendations from the Information Commissioner. I take it from both your submission and what you have just said that you support the recommendations that they have made with respect to amendments to the bill.
Ms Verhoeven : Yes, and, in particular, recommendations regarding the specific requirement to adhere to section 95 guidelines to limiting Medicare claims information available to the register only to those items which are relevant to bowel and survivor cancer screening and to ensure that there is clarity in the legislation around the purposes of the register. That is: information only directly related to the purposes of the register should be in scope and not anything that is incidental to those purposes. I also note the recommendation around mandatory data breach notification; for example, as modelled in the My Health Record legislation. We believe that that would be one mechanism for addressing some of the concerns we had around potential data breaches. We know these can be very real concerns. Only today the Department of Health has had to provide advice as to why it withdrew MBS and PBS data off data.gov.au. One of the reasons was around potential data breaches, so these are very real issues. They happen in government, they happen in the not-for-profit sector and they happen in the for-profit sector. The requirements around mandatory data breach notifications are essential.
Senator SIEWERT: Thank you. You made a comment about making the data available for research. I am sorry; I am a little bit confused about whether or not you were saying that the existing provisions are not enough when the Information Commissioner, as we have just been discussing, has made a series of recommendations including better protections around the use of the data for research.
Ms Verhoeven : My real concern around the making of data available for secondary uses such as research when there is a for-profit provider is that the for-profit provider will intend to charge and potentially charge significant fees for access to that data, and I would like to see some assurance around this data being available for the public good, including for research purposes.
Senator SIEWERT: We talked this morning with Telstra about fees around access to data, and certainly the understanding I took from that, although we will clarify it with the department, is that there would not be fees charged.
Ms Verhoeven : That is interesting, though, because in the 2016 budget there was actually a budget item from the Department of Health around charging for secondary use of data. To the best of my knowledge, that has not been implemented by the department yet, but I wondered whether they might have envisaged that as being a mechanism to use in relation to this data.
Senator SIEWERT: That is a good follow-up point. I want to go to the point you make in your submission around including other registries, and you mention breast cancer. Have you raised that with the department?
Ms Verhoeven : No, only via this submission, obviously, and I guess it is an interesting matter—we do not know why that has been excluded. Perhaps that is by arrangement with the states and territories, but it seems to us that, if you are looking at a national cancer-screening database, to include breast cancer screening in there would be a useful thing to do.
Senator SIEWERT: My next question goes to the comment that you made towards the beginning of your opening statement and the issue that you raise in your submission, which is the issue around the expected costs and savings that will result from the move away from the current eight registers. Do I take it from that that you are interested in the costs and savings? We have had discussions this morning about the value of one single register. Are you questioning the efficacy of having a single register as a health outcome?
Ms Verhoeven : No. We believe a single register is a good way forward, but the department has argued in its submission to this committee that this represents value for money. If that is the case, I think some clarity around the cost savings would be useful.
Senator SIEWERT: Thank you.
Senator WATT: Thank you, Ms Verhoeven. Your submission and your opening statement emphasised the importance of transparency given the size of this contract and its duration and importance. I think you said in your submission that you thought it would be desirable to know a bit more about the contract. Do you think it is important that the public gets to see the terms of that contract?
Ms Verhoeven : I think it is very important for clarity to be given around this. To be frank, I have read the Commonwealth Department of Health's submission to this committee today and, if some of the information that was made available in that submission had been made available in the past several months, it would possibly have quelled some of the anxiety that stakeholders feel around this. So I am very pleased that they have made some information available today and I look forward to reading the Hansard from this committee process and discovering some more about it.
Senator WATT: Today we are finding out bits and pieces about what is in this contract, but I do not think we have a complete picture yet, so would you agree it would help us all, including you, to actually see the contract itself to answer any questions that people might have?
Ms Verhoeven : It would certainly be very useful, yes.
Senator WATT: I notice that in your submission you express a little bit of concern about this register being outsourced to a private company, and the quote from your submission was that because Telstra:
… do not have established health registries, it is difficult to assess the expertise Telstra Health will bring to this work compared with other established operators …
Do I take it that you were a little surprised that the government did not award the contract to an established operator?
Ms Verhoeven : Yes, that does surprise me because this is actually a very critical dataset for the nation. I do not believe it is one to experiment with. I think that Telstra Health, like any other organisation, can employ people and can contract pieces of work. I note in their submission they have provided evidence of like work that they have contracted with various organisations, none of which though are major national datasets. I do think it is quite extraordinary that a contract of this very large size, duration and importance has been outsourced to an organisation that does not have a track record in collecting, securing and reporting on data of this nature.
ACTING CHAIR: We had evidence this morning from Telstra Health. When they were asked a similar question they said that, while Telstra Health itself has been in existence for 4½ years, they are actually now an amalgamation of 11 different companies that have extensive experience in this area. I think one of the ones they talked about was Fred IT, which they do with the Pharmacy Guild. It is a system that is rolled out to hundreds, if not thousands, of pharmacies. They are in 100 or so aged-care facilities and hospitals with similar IT requirements. So while this organisation itself is actually new, according to Telstra's evidence this morning the components of the organisation are very longstanding and they are utilising existing systems and technologies. What do you say to that?
Ms Verhoeven : That is an interesting point, and I did note that myself in their submission. I have got very slight familiarity with Fred IT and the work it does. Clearly it is sensitive data and it is data that is useful to the nation; it is not data that forms part of the national health statistical infrastructure, as far as I am aware. It is certainly not data, for example, that is reported through publications like Australia's health report to parliament that the AIHW provides, whereas cancer-screening data is. Cancer-screening data is essential for Primary Health Networks. For example, one of their four KPIs is related to cancer-screening rates. So while the mechanisms may be similar in terms of collecting, storing and possibly also securing data, I am not sure that security levels around that data necessarily equate to the sorts of security levels that we might see in place, for example, at the ABS or at the AIHW for their data collections.
ACTING CHAIR: I think we all hope that it is better than the ABS.
Senator CAMERON: Sorry? I missed that comment. Did you say that you hope it is better than the ABS?
ACTING CHAIR: I may have muttered something.
Senator CAMERON: You may have muttered something like that.
ACTING CHAIR: Something gratuitous.
Senator CAMERON: You and I agree on that.
ACTING CHAIR: I have lost my train of thought. Thank you, Senator Cameron. I am easily distracted. In Telstra's submission and in the department's submission as well they said that they are subject to all the same standards in terms of privacy—and the privacy commissioner reaffirmed this today—that the public sector is and also are subject to oversight of the Australian Signals Directorate in terms of compliance and accreditation. That was confirmed this morning.
Ms Verhoeven : That is useful information to have.
Senator WATT: I want to go back to the awarding of the contract. You mentioned that you were a bit surprised that it went to someone other than an established operator in the exchange you just had with Senator Reynolds. We all acknowledge that Telstra have got fantastic IT capability—I do not think anyone disputes that—but they have not really had the experience that other operators have had in operating these kinds of registers. So does that leave you with any concerns about their capacity to operate this register?
Ms Verhoeven : Yes, it does lead to concerns and partly leads to concerns about how they will interrelate with the other national health statistical infrastructure. I notice that Cancer Australia have made a submission on this and they clearly do not have particular concerns in that regard.
For example: there are many opportunities to link this sort of data with data holdings at the Institute of Health and Welfare and with data holdings at the ABS—cause-of-death data, for example, that was released this week. I would be very interested to understand how Telstra Health, as an organisation—and perhaps this is through the stewardship of the Commonwealth Department of Health, so perhaps it is for them to answer—will link that part of the health statistical infrastructure with the established health statistical infrastructure in this country such that we can have a complete overview of health and of cancer. That is really what the Australian public and Australian health researchers want to be able to do.
Senator WATT: I think we have already had in other evidence today that this register is scalable. There is the potential for other registers to be added to it or for it to be contracted out to private providers—that kind of thing. Would that be a concern to you, if there were further outsourcing of this kind of work to the private sector?
Ms Verhoeven : I think you are very correct in that it is scalable. Clearly, the breast cancer screening registers, which we have noted in our submission, perhaps ought to be seen in the context of this as well. It would be interesting to understand how an organisation like Telstra Health would be able to work in that commercial environment with other agencies that might hold major national data collections of this nature.
Either Telstra Health has to be able to answer that or the Commonwealth Department of Health, as a steward. I note that they described themselves as the data custodian. They must be able to answer that and provide clarity for researchers, for clinicians and for the public.
Senator WATT: And given the type of work that your organisation does—you are obviously privy to all sorts of discussions about the way the health services are to be provided into the future. Are you aware of other aspects of public health services that outsourcing and private operators are being considered for?
Ms Verhoeven : Telstra Health have already indicated in their own submission that there are opportunities to link the cancer screening registers with the My Health Record. We know that My Health Record interacts with clinical information software that is held by general practice, but that the software is developed and owned by various commercial operators. Clearly, there are opportunities to link with any number of those organisations into the future.
And that may not be a bad thing, but what we need to do is to ensure that the infrastructure around this and the agreements in place around this are robust enough to ensure that there is protection of the data and protection of individuals' information.
Senator WATT: One of the other things you mentioned in your submission concerned the potential for this contract to be extended, and you argued for a competitive tender process after the initial five years expire rather than an automatic extension for another 10 years. What are your concerns about an automatic extension?
Ms Verhoeven : It seems extraordinary that that is the case—particularly where you have an organisation that, frankly, does not have a track record in delivering major clinical registries winning a contract, and a very high-value contract which potentially has a life of 15 years—and particularly when I note that widely across the health sector many organisations, for-profit, not-for-profit and public organisations, struggle to secure funding for even six to 12 months. It is actually quite interesting, the potential longevity of this contract.
Having said that, it would be very nice to know that statistical collections will be governed in one place, held securely in one place and operated under a secure arrangement. I am sure that the operators of the statistical collections at the Institute of Health and Welfare and other organisations would like that clarity too.
Senator CAMERON: Professor Bruce Armstrong, in his submission, raises concerns about this type of program being in the hands of a corporation whose prime responsibility would be the shareholder, and that the directors would be under obligations under the Corporations Act to have returns to the shareholder. Do you share any of those concerns?
Ms Verhoeven : Yes. Professor Armstrong's comments were very interesting. Of course, it is always the case with a for-profit provider that their first obligation is to the shareholders and to meeting the requirements of the Corporations Act. As Professor Armstrong acknowledged, there is obviously also an obligation for directors of companies to ensure that their company meets its contractual obligations and that it does so in a way which does not jeopardise its ability to remain solvent. Clearly, that is an obligation as well. But I guess the Information Commissioner has probably made some very interesting points around the training for Telstra Health staff around privacy and security of large government data holdings. I would suggest that extending some of those obligations around the governance of this to the directors of Telstra Health may not go astray as well. This is not uncommon. For example, hospital boards around the country concern themselves not only with the financial governance of their organisations but also with the clinical governance of their organisations. I think it would be in the national interest for the Commonwealth to assure itself that the Telstra Health board realises that its obligations are not only around financial governance and contractual governance but also around governance of the clinical data that it has in its possession.
Senator CAMERON: I think the government has a bit of a track record in looking after the big end of town.
ACTING CHAIR: Is that a question or commentary, Senator?
Senator CAMERON: I will start again. This government has of a bit of a record in looking after the big end of town, and this seems to me to be exactly what has been happening here. Are you aware of any other country where this area, the bowel cancer screening register, is handed over to the private sector?
Ms Verhoeven : I am not aware of the arrangements in other countries around the ownership and operations of cancer screening registries, but I am certainly aware that in many other countries there are outsourced arrangements for all sorts of health services and health related activities. However, I would say that one of the very strengths of the Australian health system and the national health infrastructure we have is the stewardship that government plays in that space by ensuring that it is a health system for all people, not just a health system for those who can afford it. My organisation argues very strongly that health is a matter of national interest and that it should have very, very strong oversight and stewardship from the Commonwealth.
Senator CAMERON: Telstra Health is a relatively new part of Telstra. The core business of Telstra is certainly not health. Given the comments of the chair, this is, as I understand it, an amalgamation of about five companies—maybe more than that or less.
ACTING CHAIR: It is 11, I think.
Senator CAMERON: Eleven companies. Are you aware of whether the bringing together of these 11 companies has been successful and whether there are any outstanding issues with this amalgamation process?
Ms Verhoeven : I am certainly aware that Telstra Health has been very aggressively buying up lots of organisations in the e-health space. Regarding purpose, I am not privy to the deliberations of Telstra Health's governing board, but I do think that it is a significant move away from their core business. While they may end up becoming a very successful e-health business in the future, they are a relative newcomer to the market. I do think that when we are talking about national health infrastructure, such as cancer screening registers, new players to the market, such as Telstra Health, must be able to demonstrate their credibility and their expertise to a level that is unquestionable. We absolutely must have that assurance, because they are a new player to the market.
ACTING CHAIR: Thank you very much, Mrs Verhoeven. We are now out of time and I thank you very much for your evidence provided today.