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Senate Select Committee on Health
Health policy, administration and expenditure

McKENZIE, Ms Anne, AM, Consumer Advocate and Program Manager, Telethon Kids Institute; University of Western Australia School of Population Health

STANLEY, Professor Fiona, AC, Patron and former Director, Telethon Kids Institute

Evidence from Ms McKenzie was taken via video conference—

Evidence from Professor Stanley was taken via teleconference—

CHAIR: Welcome. Do you have any comments on the capacity in which you appear today?

Prof. Stanley : The reason I am so excited about participating in this Senate committee is that the power of using population data and record linkage, which we have demonstrated so beautifully in Western Australia, has until recently been undervalued across Australia, and I think that the changes happening now in Canberra, particularly the Prime Minister and Cabinet document which came out recently, has given us a great sense that the data that are collected routinely in Australia now will be able to be utilised for policy and practice, not just in health but across the whole of the public service domain. So I come with an expertise of, I am afraid, nearly 40 years plus of using population data and record linkage for epidemiological, healthcare and other service studies.

CHAIR: Thank you very much, Professor Stanley. Ms McKenzie?

Ms McKenzie : I have worked at the University of Western Australia School of Population Health and the Telethon Kids Institute since 2004 as a consumer advocate and manager of the Consumer and Community Involvement Program. I have also been a health consumer advocate for over 20 years. I currently serve on national health committees for the Consumer Health Forum and on state committees here in WA for the Health Consumers' Council of WA. I am really speaking today on behalf of over 80-plus consumer and community members that have been on high-level committees that have expressed concerns over a long period of time about the lack of access to and delays with Commonwealth data.

CHAIR: Professor Stanley, do you have an opening statement that you would like to share with the committee?

Prof. Stanley : Not really. I am not quite sure of how you would like me to do this—do you want me to initially answer questions? I could make an opening statement and am very happy to do that, if that is what you would like me to do.

CHAIR: We will follow with questions, but, if you could put a summary of key issues that are focusing your mind at the moment that, would be helpful.

Prof. Stanley : I am coming from experience since 1979 of using total population data. These are existing agency data such as births, deaths, hospital admissions and registry data where we have complete ascertainment of all birth defects, cancers, et cetera. Now we have data on educational outcomes, child protection, corrective services and public housing in Western Australia, as well as from the Mental Health Commission, where we can bring all these data together and link them—the power of that being that now we can actually in Western Australia have almost an ongoing total population cohort of every child born since 1980 and their experience of using the various agencies and the outcomes of using those agencies might be.

So one of the two big issues that I really want to address with you is an appreciation that these data are collected routinely on everybody who has a contact with any service, not just health. I know we have more experience with health, but what I am really keen on people realising is that this can be across the whole of government for all of the services and all the data that is collected, particularly where we collect unit record data on individuals, in which we have both the care or the service received and the outcome that might be measured by linking data from another agency. We are able to look, for example, at the social antecedents of health; we are able to look at the health antecedents of educational outcomes and the educational antecedents of health outcomes and how things like disability related to child protection outcomes and so on and so on.

I am trying to demonstrate to you that you collect these data across the whole of government, both in state government departments and in federal departments, and it is grossly underutilised for the benefit of the people who are receiving these services. If you have data sets which are in fact underutilised for improving the services—even to the stage of preventing deaths or at least improving outcomes—and you do not use this information, I think this is almost verging on negligence. It is certainly not very exciting and it is certainly not a good use of the data which are collected routinely to use them inadequately. That is the most important point that I wanted to make: that we have enormous capacity in Australia because of the data that is collected. We have demonstrated that in Western Australia very dutifully, and I have sent those documents across to you of a micro model of what all of government set of databases linked together could look like. If we did that for the nation, we would be second to none in the world in enabling us to evaluate all the outcomes of all the services that are provided. We would be able to influence and evaluate evidence based practice; we would be able to look at the epidemiological trends and risk factors of major and costly problems. They are the sorts of things that excite me enormously. As I said, seeing that PM&C document on using data was like a breath of fresh air. I have not seen anything like that out of Canberra for years.

The second major point that I wanted to make—

CHAIR: just before you go on, Prof Stanley, can I just confirm that the model you were talking about is in the document you provided with the Telefon Kids Institute, the Developmental Pathways project of WA?

Prof. Stanley : Yes.

CHAIR: Are you referring to the design network on the second page?

Prof. Stanley : That is right. All of those datasets are linkable in Western Australia. We grossly underutilise this dataset, because of the lack of analytical capacity and the fact that this is funded on a shoestring by an ARC linkage grant. If this was in a properly governed, properly funded and really exciting environment across government—perhaps out of the Department of the Premier and Cabinet, the Department of the Prime Minister and Cabinet or collectively in those two areas across the nation—it would be just superb.

The second point I want to make is that we could do this extremely effectively using Commonwealth data by using the Medicare number as our linkage key. Everybody has a Medicare number. The problem in Australia, compared with Scandinavia and other countries—Holland and so on—is that those other countries have unique identifiers. Our Medicare number could become our unique identifier. Doing that would mean that we would get a 100 per cent linkage, which means the data would be absolutely fantastic. If you do any survey of any kind, you never get everybody in that survey. Where you do a linkage based on total population data, you get everyone. You get Aboriginal people, you get people who never usually participate in the surveys—the poor, the ill, the mentally ill and so on. We would get everybody in our record linkage to those studies. If we were to use a Medicare number, that would be a superb way to do it.

I will give you one brilliant example, which has been frustrating me for something like 30 years. When we set up the Birth Defects Registry in Western Australia—the first in Australia—it was in the wake of the thalidomide disaster, where children had been born with terrible defects because the mothers had taken what was an antinausea drug during pregnancy and they had not realised, of course, that there were these major birth defects. They picked up these defects because they were very unusual. We have been trying to link PBS data to the birth defects registries in Australia for something like 30 years and have been unable to do it. If we linked all the PBS data to all health outcomes—not just birth defects registries but cancer registries and other health outcomes in Australia—we would be able to pick up, extremely rapidly, any adverse effects of drugs, both new and existing.

We have trialled this in Western Australia. Lyn Colvin did her PhD on this and proved this is absolutely feasible to do, before the curtains came down and Canberra would not let us link any more data. What you would be able to do with this linkage of the Medicare and the PBS data to all health outcomes is really this evaluation of all the outcomes of care. You would be able to detect fraud very quickly. You would be able to use this for major epidemiological studies and also to say: 'This is what we know is evidence based care. Who is practising it and who isn't?' You would be able to do it by state, by subgroup, by subpopulation, by age group or by gender. You would be able to do it by any which way because you would have the total population and be able to look at this.

It does need significant analytical grunt, and so the third thing that I want to raise is the opportunity of thinking about and having a discussion about whether we need an institute of population health and wellbeing which would incorporate this capacity to analyse data. Academics and bureaucrats would then work closely together, as we do with our project in Western Australia, to enable this to happen for the nation. I do not expect you to discuss this much tonight. I just want to raise it as something that I have proposed, and we would probably come back to Canberra with a major proposal for such an initiative. It would be essential, if we want to capitalise on these incredible datasets that we have and the possibility of linkage between Medicare and PBS data and our health outcomes and our other outcomes, to have a really top group of people analysing this data and enabling it to be used for policy and practice.

Thank you so much for allowing me to talk to you today.

CHAIR: Thank you, Professor Stanley.

Senator WILLIAMS: Professor Stanley, I am looking at your submission and your model of data that is linked and used by the Developmental Pathways Project. I notice in the right corner you have child protection family support data. I think this is very important, given what happened in South Australia last week—that is, the coroner's report on baby Ebony, which was a disgusting incident in which an innocent four-month-old girl was killed. We leave it to the courts to do their job, but you know where I am coming from—

Prof. Stanley : I do.

Senator WILLIAMS: In parents in New South Wales and South Australia did not know the background, the issues or the problems. I think this is a very important issue you have raised here.

Prof. Stanley : It is an absolutely tragedy and, in fact, it should not have happened because the current legislation allows for the sharing of data across jurisdictions in a real-time situation.

Senator WILLIAMS: Yes.

Prof. Stanley : What we are talking about here, of course, is anonymised data analysis. It is not actually set up to detect this kid who is going from a high-risk situation in New South Wales to a high-risk situation in South Australia. That is covered already by legislation, and that should not have happened and it should go to the courts. I quite agree. I was shocked about that.

Senator WILLIAMS: If I just stop you there. One of the problems we have is that that issue is covered under the department of social security. We are talking about the minister for health here as well. Have you given any recommendation to government about combining all these resources, all the portfolios, to get this one datalink branch master linkage file hooked up around our nation?

Prof. Stanley : There is a National Collaborative Research Infrastructure Strategy, which we applied for and got in Western Australia, which has taken this system of record linkage to every state and territory. It is called the Population Health Research Network. It is headed up by Merryn Smith. Now, in every state and territory there is a capacity, like we have in Western Australia, ready to go. That is based on their state data but it is increasingly trying to get access to Commonwealth data. In every state and territory we now have this capacity, in various degrees of advancement and so on, hence my excitement about having a national coordination of this which would involve the Commonwealth data.

Senator WILLIAMS: Thank you, Professor.

CHAIR: We will come back with more questions, Professor Stanley.

Prof. Stanley : Of course.

CHAIR: Ms McKenzie, would you like to give us your opening statement, which I understand you want to read.

Ms McKenzie : I would like to. I probably come from a bit of a different point of view than Fiona about the future. I really want to talk more about what has happened and about the community input to that. Something I would say is that the Telethon Institute and the School of Population have consumer and community advisory councils and the Developmental Pathway Project has a community reference group which provides community input. The information that I will be talking about has come from these committees.

Prof. Stanley : They have been absolutely wonderful in supporting these initiatives, I have to say. We could not have done this without the support of the communities.

CHAIR: Wonderful. Ms McKenzie.

Ms McKenzie : I just want to give you a little bit of an overview of our involvement, and we write about that in our submission. Currently we support 29 committees across the two organisations, and these are committees that are working to make decisions about the research that is done. There are 186 consumer and community members sitting on these committees, and 14 of the committees are directly associated with linked data research projects. It is quite a sizeable amount of community input into the two organisations.

As I said in my submission, we run training workshops for researchers. Very specifically we have run 14 state and national training workshops for consumer and community members to develop an understanding about basic research information, and part of that is about understanding the data that is collected by governments, both at a state and Commonwealth level, and about the linked data capacity. We have also held, over the past 10 years, 65 community forums which have been attended by over 1,500 consumer and community members. Very specifically, a third of those projects have been talking about projects that are linked data research projects.

I suppose what I am trying to do is give you a bit of an idea that this is not a small program. This is quite a sizeable program. As I said, when I wrote my submission, we had 700-plus members on our network. We now have over 800 members and they are consumer and community members from across Australia. I would really be talking about the sorts of issues that they have raised about the ongoing delays and access to research projects, particularly for the bulk data sets.

One of the specific points raised by consumer and community members in those high level committees, as I said, is that there is an overwhelming expectation that governments will use the data they routinely collect to conduct independent health and other research to create better health outcomes for Australians. It is felt that not doing this is morally and ethically wrong and a gross waste of public money, particularly when we are talking about research that has been approved, funded and deemed ethically appropriate but is not undertaken because the data is not available.

When it first became an issue in 2007, we became aware that there were some 20-odd projects across Australia that were not being conducted because the data was not made available to them. The community members sitting on these committees were really outraged that this was allowed to go on. And, as I said, I sent you a letter that we sent to Minister Roxon in 2010, which we had a very unsatisfactory response to. We had a mid-level public servant pop in and visit us and nothing ever came out of that. Do you have that letter?

CHAIR: We do have a copy, but I do not have it in front of me at the moment. We can certainly look at that.

Ms McKenzie : All right. It basically says exactly what I am saying to you now. Consumer and community members at many events have said that government agencies should not use privacy as an excuse for not releasing Commonwealth and state health data that is collected. Consumers have moved in the last 10 years that I have been really actively involved in this area: they have moved from a point of view of concern about privacy issues to a point of view where there is now overwhelming support for the research to be done. That is a really big concern, and that governments should have rigorous governance and access processes in place to deal with any perceived privacy issues.

Another concern is that important research questions are not being asked because of the difficulties in accessing Commonwealth health data. I have a direct quote from a researcher who, in a grant application that I have been working on with him this year—he had written this before I had anything to do with it—said: 'We have elected not to request MBS and PBS data from the Commonwealth, as local and national jurisdictional sensitivities still persist with its provision. In addition, there is a real risk that we would not receive the data in time for analysis within the four-year study period.' It is of huge concern that important research is not being done because there is now a growing thought that it is not worth the trouble. That is something that I cannot say loudly or strongly enough—that is, consumer and community members are quite outraged that that has been allowed to happen. There is also a lack of transparency about the processes and guidelines used by data custodians to make decisions about access to Commonwealth and state data. This is across the board. There is no evidence that community priorities for research are being considered in these decision-making processes. Again, that is of huge concern to us.

I would just like to finish with a couple of quotes from consumer and community members at a forum that we held in 2019 on state based linked data research projects and access issues. I have every confidence that it is exactly the same for the Commonwealth issues that I have talked about. One quote is, 'Government intrudes on just about every area of our life for reasons that aren't always clear, yet we have information that can be de-identified and used to help treatment or policy changes, but it's put in the too-hard basket.' Another one is, 'Why aren't governments facilitating more research to be done with information that they already have?' And lastly: 'I know that data is "anonymised" but I want you to remember that it's my story: it's about me, my life and my family. Researchers and governments should honour that by making information available to use for research, and telling us what that data was used for and what has been found.' I think they are quite powerful quotes, and I think they really support what Fiona has said. We have moved from a point where there are concerns about privacy to one where people just want the research done. They also cannot understand why governments—all governments— for many years have allowed this ongoing delay with access to important health and other collections to improve health for Australians. I do not really have anything else to say except that there is overwhelming support for this. I do not think it is just from a few individuals. We interact with hundreds of people across this state and other states who have all said exactly the same thing.

CHAIR: Thank you very much, Ms McKenzie. You are clearly a woman of passion. It is great that you have given your energy to being an advocate for consumers.

Prof. Stanley : Can I just add to that: there has not been one breach of confidentiality in the Western Australian data since 1979 when we started our linkage—not one breach. So the proof is in the pudding that this is not an issue. We believe that we have the best privacy practice, in terms of record linkage, in the world. Other countries are now really changing—as Anne just said—towards utilising data: the UK, Scotland, even Germany, Europe, Canada always has, and the Scandinavian countries are streets ahead. I think there is now this pendulum swing back from being overly concerned about privacy to a concern that we must use the data to improve the services that we provide for people every day.

CHAIR: You have both indicated a pretty significant culture shift there. It has been raised a number of times with us that there is a resistance to that culture shift. The status of the role of custodianship is something that has also been raised as an issue that is vitally in need of redress if we are going to shift to the model you advocate. I have a simple question that I would like to put to both of you. Professor Stanley, were you consulted on the government's new Public Data Policy Statement?

Prof. Stanley : No, I was not. What was interesting is that I actually presented a major report called Data for science to John Howard's last Prime Minister's Science, Engineering and Innovation Council. That was in 2006; it was his last meeting. It has a lot of the philosophy that is in that PM&C document. No, I was not consulted. I do not know why, because I am well known as an advocate and a user in this area. It does not matter. I do not care at all. All I want is that that kind of thinking is absolutely spot on, and I was absolutely thrilled to see the document.

CHAIR: Alannah MacTiernan has been a passionate advocate for you and for Western Australia—making sure that we got evidence from you. Were you consulted by the government prior to the Public sector data management report being released?

Prof. Stanley : No, I was not.

CHAIR: Ms McKenzie, were you consulted prior to the Public Data Policy Statement?

Ms McKenzie : Not at all. I accidentally found out about your review—it was just a serendipitous moment— and decided to contact Michael Kirby. So, no—I had had no contact at all.

CHAIR: Similarly, were you consulted prior to the Public sector data management report?

Ms McKenzie : No, not at all. There is something I did not say before: this position that I hold in Western Australia is actually quite unique in universities and research institutes across Australia. I did not have the original position, but it came about because of community concerns about the establishment of the link data capability in Western Australia in 1998. This program has been operating since then, and is now, all around the world, touted as a good practice example—particularly involving consumers and community members in link data research projects. No, I was not consulted. But it is always the way, isn't it? Other countries see your worth greater than your own country.

CHAIR: Yes. In evidence we have just received, Mr Timothy Pilgrim, the acting Australian Information Commissioner Office of the Australian Information Commissioner said there are national meetings of privacy commissioners but Western Australia has no privacy legislation and no privacy commissioner who participates in that forum. Yet, we are hearing very assertively from you, Professor Stanley, that there have been no privacy breaches. Can you make those two things connect for me?

Prof. Stanley : Sure. I think we have tried to get privacy legislation in Western Australia for the last 15 or 16 years, but we are covered by Commonwealth privacy principles and NHMRC guidelines on research in human populations. That has covered and protected us, but we would prefer to have had privacy legislation, there is absolutely no doubt. It never seemed to get up with government. It always seemed to fall off each sitting agenda. But we are protected by those national principles. We have not had any breaches; they are immediately reported, if they happen, to the data linkage branch in the health department and we have never had such an event.

CHAIR: I have a question about the data linkage agreement. I understand there was a memorandum of understanding signed in 2002 between the Commonwealth Department of Health and Ageing and the Western Australian Department of Health about cross jurisdictionally linkage. Is that still current and is that the authority on which the linkages are provisioned?

Prof. Stanley : Yes, absolutely. The difficulty is that it has not been honoured. You might want to get more information about this from our Department of Health. The latest round of signatures—and I do not know if and has any more information on this—have not happened for some years. I think we have lobbied very hard to try to get access to the Commonwealth data for the whole range of projects that Anne outlined, but we have not had any success with that. My understanding is that the whole philosophy and culture is changing in Canberra and people are now much keener to allow data to be released.

CHAIR: What is the status of that MOU? Is it current, or is it not current? When you refer to signatures, what do you mean?

Prof. Stanley : As I understand it, the latest round of figures with the latest MOU has not happened. That is all I know. Anne, do you know any more about that?

Ms McKenzie : No, my understanding is exactly the same. I think it has not been signed off. I do not work in government so I do not know, but my understanding is that it has not been signed off. There is a stalemate. As I said, there is now a developing culture that people are not going to bother to do the research because it is too hard and they have to wait too long.

CHAIR: The stalemate that you describe is clearly of concern. If I read a statement to you, could you give me your view of whether this is accurate or not?

Prof. Stanley : Yes. I am sorry I am not across this as well as I should be.

CHAIR: 'Access by the West Australian government to linkable medical and pharmaceutical benefit's data can be provided where they have approval from an accredited human research ethics committee for a defined project that has been assessed as contributing to the improvement in Australian health systems and outcomes.' Is that true or false in your view?

Prof. Stanley : I think that it is true. It is just that our understanding is that it is has not been signed off by Canberra. You might be able to tell us actually what has happened.

CHAIR: If there is a cost involved, is that part of the problem? 'Any provision of data requested for a project will be subject to cost recovery and requesters should consider this in the cost-benefit analysis for their research.' Is that the sticking point or is it something else?

Prof. Stanley : No. In fact, basically, we add it into all of our grants. The NHMRC and ARC have acknowledged that there is a cost for linkage, and we have paid for staff in our data linkage unit from our Developmental Pathways Project and other projects so that the linkage can be done. It is not the cost that is holding us up. What we do not understand is whether it is privacy or a reluctance for us to use Commonwealth data in this way. It is not just Medicare and PBS data—there is also the child immunisation data, which we have had more recent access to, and, of course, the National Death Index, which we have also used intermittently.

Senator WILLIAMS: In relation to this whole national scheme, you might be able to help me, Professor. Hypothetically, if you were put in charge of the nation tomorrow and whatever you decided or whatever you said happened, what would be the first thing you would do to get a national database all linked up to the one silo, where this information could be easily accessed but secure as well? That is a pretty difficult ask, is it not?

Prof. Stanley : Yes. I think what I would try to do is to get the Medicare numbers accepted as the linkage keys and to actually establish a record linkage, across all states and territories, from the Medicare system and the PBS into all of the state- and Commonwealth-based health outcomes that we could. I would try to get up some really good models to demonstrate how effective this linkage could be—as has been suggested in the PM&C document. I think that the next thing I would do, of course, is set up a capacity around this linkage to enable it to be analysed in ways that are appropriate for the bureaucrats and the policy wonks to use.

I am not even talking about electronic health data, which, at the moment, is not really on the agenda in a very widespread way; I am just talking about the data that is currently collected. It would be extraordinarily exciting if we could do that. That would be the first thing that I would do.

Senator WILLIAMS: If this national base—with better technology, better communications and better access—was established, would you see that as a big saving to the state and federal budgets with health care?

Prof. Stanley : The savings would be huge.

Senator WILLIAMS: Really?

Prof. Stanley : You would get rid of inappropriate practices. You would detect early, harmful and costly adverse outcomes. I think it is amazing what this would be able to do, in terms of healthcare costs. If you really want to tackle costs and make the health system and other systems more efficient, then you have to get your data to tell you how you do it.

CHAIR: Ms McKenzie, did you want to contribute to that?

Ms McKenzie : I just wanted to say that I absolutely agree with Fiona. I think that, once people understood the privacy-protecting nature of linked data research, there would be wide community support for such a proposal as that which you have put forward. I think it could only save money. It has to save money.

Prof. Stanley : I have one example around a PBS linkage to all the health outcomes. I do not know if you remember Vioxx, but Vioxx was not picked up for a long time—perhaps for four or five years—because it caused a common outcome of heart attacks and heart-related deaths. However, if we had linked our PBS into all our health outcomes, how many deaths and serious, morbid and costly heart attacks could we have prevented in that four or five years? Hundreds and hundreds. In my opinion, not doing this linkage of PBS to health outcomes alone is actually negligent.

Senator MOORE: Professor Stanley, I am looking at your document. It scared me when I first looked at it, but when I took a closer look it made a lot of sense.

Prof. Stanley : Good.

Senator MOORE: You have obviously been working in this area, as has Ms McKenzie, for a long time. Access to the federal Medicare data seems to have been on the discussion board for a long time. What were you told by the departments at the time as to why you could not have access to them? What was the rationale for it?

Prof. Stanley : We did not actually get a rationale, because initially we did have access to some of the data.

Senator MOORE: And then they took it back?

Prof. Stanley : And they just delayed and delayed and delayed. So we never actually found out—we tried to find out whether it was a privacy issue—D'Arcy Holman has written on this as well, so it might be worth contacting him and getting his perspective—but we never got a straight answer as to what it was that was holding up the data in Canberra and why we were not allowed access to it. The veterans' affairs data was made freely available I think, so that has been an ongoing—there is no problem with having access to the veterans' information, and that has been used to very good effect in South Australian analyses.

Senator MOORE: This issue between the veterans' affairs data and the Medicare data, we heard about that at the last hearing. Even though it was the same decision-making process, it was as though there were two different worlds.

Prof. Stanley : Yes. I do not know if the issue comes from the Medicare area or whether it is coming from somewhere in Health; or did it come from somewhere in Health in terms of privacy issues. I am sorry, but I am actually not sure. We did try to get an answer, but after a while we just gave up.

Senator MOORE: You stop asking; you concentrate on you can do.

Prof. Stanley : Yes, that is right; absolutely. We wanted to set up this proof-of-concept of setting up a mini whole-of-government activity for WA, and trying to convince the Commonwealth that this would be a way to go. My biggest anguish has been that over 30 years of setting up a birth defects registry to find the next thalidomide, another one could be happening all the time and we are unable to detect it. The preliminary data from Lyn Colvin is that she did pick up a suspect drug which could have caused an increase in birth defects, but it needed a much larger dataset—that is, a national dataset—to ascertain whether that was right. And you do need to have national data for some of these rarer outcomes, which is why we want to go national.

Senator MOORE: And even with national data in Australia, it is pretty small. In comparison to international collections, it is still relatively small.

Prof. Stanley : Yes. Through the NHMRC 12 years ago, I approached and brought out the person from Canada, Nora [inaudible], who was setting up their pharmacovigilance strategy, to convince our government that this would be the way to go. That was about 12 years ago. Canada have gone gangbusters. If we had joined together with Canada, we would not have had 20 million people on which to base our pharmacovigilance, it would have been 55 million people and we would have been able to detect adverse drug reactions extraordinarily quickly with that combined national data with Canada. It is a lost opportunity, and it really has been an anguishing thing for me, this lack of enthusiasm for the linkage of PBS data.

Senator MOORE: The new Secretary of the Department of Health has been making very positive statements in this space.

Prof. Stanley : Yes.

Senator MOORE: It is almost like it is a personal commitment that he has to break down—having been in Health, leaving Health and coming back to Health, it seems to be something that he is very interested in. Have you had any contact with him?

Prof. Stanley : The trouble is that for eight or nine months my husband was very ill with lung cancer. He died in July, and then my mother died. I have actually been attempting to keep my head above the parapet, just to cope with all of that, so I am afraid I have not done the usual advocacy and lobbying that I would have done had I not had these family tragedies to cope with. But I am back on track now, and just you wait! With this new cultural change in Canberra, I tell you that nothing could be more exciting and I am happy to be used in any way at all to help progress this given the experience we have had in WA. But I just have not had the time over the last eight to nine months, I am afraid.

Senator MOORE: Professor, I think you have been working in the field for a very long time. The last few months have just been a kind of hiatus, so you will be back in there fighting strongly, I know. Certainly, the statements made by the new secretary in this space are quite clearly a different approach, so we will see what happens.

Prof. Stanley : Yes, I am very excited about that. When I saw this document coming out of the Department of the Prime Minister and Cabinet, I could not believe it. It is so broad reaching. It has models of examples to use. It is not just in technical health data; it is in social data, child protection and early childhood development. It is across the board. My heart lifted when I read it.

Senator MOORE: It is the social determinants of health model, which is so necessary.

Prof. Stanley : Absolutely. But, you see, everyone has to understand that, whilst we seem to understand the social determinants of health, it is the social determinants of everything that is so important. It is also the social determinants of education, the educational determinants of health and the health determinants of education. All these things are interconnected, which is why our model of a national institute of population and health or population data and wellbeing could well be fantastic because it would mean that all the data are used in a whole-of-government way with very good analytical grunt to run it. It is going to take some really sophisticated analytical grunt. We already have it within ABS—I have just had a great email from David Collett about data linkage—and we have it in the Australian Institute of Health and Welfare. But let us bring this all together with all the states and territories to make a hub and spoke, a national institute capacity, to analyse the data appropriately. It could be just fantastic.

Senator MOORE: You said the Canadians have been doing this. We have been looking for positive international experience, and you have mentioned the Canadians a couple of times.

Prof. Stanley : There are Canadians, particularly in Winnipeg and Manitoba. The others are the Scots. Wales has now got the most sophisticated record linkage. At the last international data linkage meeting in Canada a year or so ago, we in Western Australia were lauded as being the leaders. But it was quite obvious to us that we were being overtaken by all these other jurisdictions that are doing it in much more sophisticated ways because they have been encouraged to do so.

Senator MOORE: And funded to do so.

Prof. Stanley : Yes.

Senator MOORE: Ms McKenzie, I have looked at the experience you have in this space. It is so important. At the national level in the past, when we have had issues around medical records, the consumer voices tended to be quite conservative in terms of their concerns about control and privacy, and, I think, their concerns that their voices were not heard. I am generalising terribly.

Prof. Stanley : Big Brother.

Senator MOORE: Yes. Certainly, in some of the inquiries we have done that has been the kind of feedback we have had. From your perspective, how do we handle that?

Ms McKenzie : I think there is a basic difference between electronic medical records and linked data research. One is anonymised and de-identified. Consumers have to get their heads around that and understand that. As I said, I have been a consumer advocate on the national scene now for 20 years and so was very much involved in the early work with NEHTA around the electronic medical records—but for my own sanity I had to pull out of that. When I came to work in this job 12 years ago, I had never heard of linked data research. I did not know about it, and I have worked in health in this state for a lot of years. I did not know that there was a data linkage unit at the Department of Health. But I got my head around that and we worked with the Consumers Health Forum of Australia and other very senior health consumer advocates to actually understand the privacy-protecting nature of linked data research and the benefits that it can bring by having whole-of-population research being undertaken. I never ever hear anything now so I think there not only needs to be a commitment to undertake the research and make it accessible but there also needs to be a commitment for proper active consumer and community involvement in all levels of what is developed so that you do not have to deal with those fears about potential privacy issues because, with linked data research, they are just not there. This is truly what we have seen. A very senior consumer advocate, who was very anti linked data research, has been the chair of a consumer health forum and she is very involved in the NHMRC. A couple of years ago she said:

A decade ago we were strongly opposed to data linkage, after 10 years of coming to understand exactly where the risks lie, and more importantly where they don’t, we are now the strongest supporters of using data to conduct meaningful research.

I pulled that quote out because I felt that is it all in a way. It is about providing information and openness. We work really closely with researchers. On a daily basis during the year, I see consumers and community members supporting the research that is done at the two organisations I work at. It is not hard to be passionate about the benefits of expanding that across the country because it is real.

Prof. Stanley : I think that basically having consumers on board is absolutely key because they do represent that issue very well indeed. If we do not use the electronic health records in this epidemiological way then we are absolutely crazy. Whilst we are group of researchers using this agency data—the data that is already collected by agencies—it is a bureaucratic agenda. It is a government agenda that we serve. It is not one that is going to be just a research agenda because the data are there to be utilised for policy, practice, evaluation and some epidemiological studies. But on the whole, it should be a bureaucratic agenda, a government agenda and the researchers are there to serve that agenda and that is what we have done without developmental pathways in WA.

CHAIR: And to serve the people who benefit from that insights of the research and the data collection.

Prof. Stanley : Absolutely.

CHAIR: You talked about the need for analytical grunt a couple of times and you talked about the establishment of an institute of population health data and wellbeing. You said you have put a proposal. Do you have any documentation that you could send to the committee?

Prof. Stanley : No, we are preparing such a proposal at the moment. I am actually a part-time vice-chancellor's fellow at the University of Melbourne as well as a professor at UWA. One of the things I want to do is have a roundtable at the University of Melbourne, which we will be having in the early part of this year. Now that we have got this Commonwealth document that has come out, I think we should involve the Commonwealth bureaucrats much more than we were going to initially. We just thought we would have a group of researchers chatting around a table and now I think we should go for something much bigger. What would come out of that would be a major proposal to government.

CHAIR: We are very interested in staying abreast of that and potentially having some involvement at some level.

Prof. Stanley : I could send you some of the notes that I made before my husband got sick. I have picked it up again now. I would be very happy to share those with you.

CHAIR: That would be wonderful.

Prof. Stanley : You are wonderful, aren't you? You are having this Senate inquiry. I am over the moon about it. I am so grateful to you for the chance to talk about something which is going to be great to this nation, absolutely fantastic.

CHAIR: Professor Stanley, I have read much of your work and read about you for a very long time but I can understand why you have produced so much when I feel the energy of your voice coming through the telephone. I will ask one further question about the Medicare number because this sort of harks back to the Australia card argument, and we have been getting around that in terms of the discussion about privacy and de-identified data. Do you really believe that Australians are ready for their Medicare number to become the linkage key?

Prof. Stanley : I think so. The way that Anne has approached this, and the way we have approached it in Western Australia, is to go with a very careful campaign about the issue. For example, when you ask people in a poll, 'Do you want to link your medical records for research?' about 65 per cent of people say yes. When you say something like, 'Do you want to have your medical information used so that we can detect whether drugs used in pregnancy are causing birth defects?' the answer is: 'You're not doing this already?' So the way that the questions are asked is significant. We would have to get a media champion or champions on board with us. But I do believe that, yes, the way that we would sell this would be with research champions like myself, community champions like Anne, media champions across the board, and bureaucratic champions and political champions. That would be a way to go. And it would not be about the Big Brother approach. It would be about: 'These data are collected. They are not utilised to improve health and wellbeing. There are deaths that can be prevented or a health service that could be more cost effective. Don't you want this to happen?'

CHAIR: Excellent.

Prof. Stanley : I think that is the way you would want to sell it.

CHAIR: Thank you very much for that insightful gathering together of a potential advertising campaign—by the sounds of things!—in that last comment. I would also like to convey our thanks for the frankness of your conversation and our sympathies for the challenges that you have faced in recent times, and for your loss as well.

Prof. Stanley : Thank you very much indeed. And warmest congratulations to you guys for setting up this committee. It is fantastic.

CHAIR: We are glad that both of you are on the job. Thank you very much. I appreciate your time.

Prof. Stanley : I cannot do it without Anne McKenzie, that is for sure.

CHAIR: Thank you, formidable women from the West! We will look forward to perhaps seeing you in the flesh at some point in time.

Prof. Stanley : Absolutely. Thank you very much indeed.

CHAIR: That brings us to the end of our hearing today. I thank all the witnesses who have appeared before the committee. Thank you to Hansard, broadcasting and the secretariat for their great work in preparing for today. That concludes today's public hearing.

Committee adjourned at 19:36