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Standing Committee on Health - 28/07/2014 - Skin cancer in Australia

ANDERSON, Professor Warwick, AM, Chief Executive Officer, National Health and Medical Research Council

CHAIR: I welcome the representative of the National Health and Medical Research Council. Do you as a witness of appearing before the committee have any objection to being recorded by the media while participating in this hearing?

Prof. Anderson : No.

CHAIR: Although the committee does not require you to give evidence under oath, I advise you that these hearings are formal proceedings of the parliament and warrant the same respect as proceedings of the respective houses. The giving of false or misleading evidence is a serious matter and may be regarded as a contempt of the parliament. The evidence given today will be recorded by Hansard and attracts parliamentary privilege. Would you like to make a short opening statement to the committee?

Prof. Anderson : Thank you. First let me apologise for my colleague Dr Clive Morris, who is unwell today. I am here sailing by myself. It is a great opportunity and a great privilege to be able to address the committee.

For most of the health issues that face us research is a very important part of the answer, and the NHMRC currently is funding 76 grants in skin cancer to a total of $62.9 million. That research covers the entire spectrum of health research. There is health service research, there is clinical research, there is public health research and there is, of course, a great deal of basic research into cancer, which I will just say a word or two about at the moment.

I hope you know that Australia has a really outstanding health and medical research workforce. In this area, like in every other area, we cooperate with researchers around the world. Many NHMRC grants are, of course, led by Australians but have international researchers as well. There are two of these international cooperations I want to mention briefly. We are part of the International Cancer Genome Consortium, which is a very large, multimillions cooperation around the world. We are looking at the 50 most common cancers that afflict humankind and we are cooperating as an entire world consortium on that. We happen to be leading the pancreatic cancer part of that, but there is a large melanoma component as part of that international consortium. We are also part of a new global alliance in genomics focused on cancer, because it is really the research that is leading us to understanding how diverse cancer is, how at the cell level the initial events go wrong, how many of the things we thought were true when I was a younger researcher are no longer true—the insights are really changing our total view.

Those insights are starting to have big therapeutic benefits for patients who, unfortunately, are diagnosed with cancers, including melanoma. With the Department of Health at are at the moment trying to get on top of this new wave of therapies that are coming out of research. This is the targeted, personalised health approach, where we will have expensive drugs but drugs that, instead of the blunderbuss approach of the past, will be able to address specific cancer types. It has potentially large implications for the health system and for the budget because these drugs are expensive. So, in cooperation with the health department, we are trying to roll research around some of these new, targeted, personalised drugs so we can be absolutely clear who will benefit from them and who will not.

I think we provided you with a very brief summary of the research we are funding. We have funded over $100 million since 2000, and skin cancer research has been a little more than six per cent of our total funding in cancer. I might mention one of the bigger research grants that we have in this area. It is to Professor Kefford at the University of Sydney for a classic area of research these days: looking at the cellular molecular determinants of risk of progression of cancer and of treatment. So we will soon—well, 'soon'; research should not promise until it delivers. But over the next decade, for sure, we will learn more about what genetic profiles make you at risk, what genetic profiles mean that your cancer will progress faster or slower and what genetic profiles mean in terms of the most effective treatment.

I could, being a researcher, go on for a long time about the prospects for research, but you get to ask the questions here. Thank you for the opportunity for some opening comments.

CHAIR: Thank you. Ms Hall, do you have questions?

Ms HALL: Yes, thank you. I want to ask about the number of independent trials, studies and research that is being undertaken in comparison to research being undertaken by drug companies. How does that measure up?

Prof. Anderson : That is a very interesting question. At the NHMRC, in terms of clinical trials research, in rough terms about $100 million of our $800 million is on clinical trials of all types. I know that Medicines Australia, the peak body for the industry in Australia, have indicated that they fund to about $600 million a year on clinical trials on all types. So probably that is the most specific answer I could give you for Australia, although our colleagues at Cancer Australia have some clinical trials funded specifically in cancer as well. But, for the NHMRC and Cancer Australia versus the industry, it looks like about six to one industry.

Ms HALL: You talked about a personalised approach being needed coming out of the research that is being undertaken at the moment. How well do you think our current system can respond to that? Do you think there are areas or directions that we need to look at?

Prof. Anderson : We are really just stepping out on the first steps of this process that is really going to change how we treat many diseases. I believe that around the world we recognise that cancer is the first broad area of ill health that will involve this personalised medicine approach. I am a cardiovascular type, so forgive me if I get some of the details wrong, but the essence of it is that, if we understand our genetic profile, our gene sequence, and how that is transferred into the proteins that make us work—and you, I and everybody have our differences there—we will be able to be clearer that, just now, this cancer is vulnerable to this drug. Perhaps it is a drug that we previously thought it responsible for another cancer. This offers a lot of promise because we should in due course be able to be much more precise with the drugs we have.

It offers a lot of promise, but we are not there yet. There are many years of research across the entire spectrum of human ill health that we need to do to be able to match the extraordinary precision we can now do with genetic analysis versus the extraordinary imprecision of patients and their particular profile of ill health. So a lot of the research we are funding is to try to make that a bit clearer. This patient is suffering in this way. This is the clinical description. We can now sequence your genome—shortly for $1,000 and probably for less than $1,000 in the future. The whole genome for less than a single genetic test now—it is an absolute revolution. But we are not there yet, and it is really important that research does not promise that until we get there.

As you can see, there are implications for how clinicians interact with patients. There are implications for how we get accurate gene information from the patient to the clinician and the carer. There is much work to be done to make that link much more robust than it is. It is always bad to predict, but I suspect that is at least 20 years more work.

I mentioned one of the two global alliances we are in at the moment in this area. So we are working with all the other big research funders around the world and with the health departments to try and bring order to these really new pressures that are going to come on policymakers and practitioners.

Ms HALL: Once it has been established that a certain drug or treatment is effective, how effective will the current system be for listing that and bringing that drug or treatment online? Are there changes needed there?

Prof. Anderson : It is really early days. There are just a handful of drug treatments where knowing the genetic profile is crucial to prescribing the drug and having the drug paid for by the public.

Ms HALL: I think there may be one in the skin cancer area.

Prof. Anderson : Correct—there are two in the skin cancer area. There is still considerable uncertainty around that. With the health department and through a mechanism whereby the companies will pay for the research, we are trying to wrap research around the rolling out of these new skin cancer drugs so that we do two things. Research should deliver two things. It should tell us which patients will benefit from these drugs, and that should help the taxpayer. If we can make it clear that these patients with this genomic profile will benefit and these will not, it is good for the patients who will not because we can try something else rather than giving them futile medicines and good for the taxpayer because we will not be using very expensive drugs on people who we know will not respond. So in a way your question gives us a glimpse of the future, but it is the future. Cancer is at the forefront. There are a couple of melanoma drugs that are at the forefront and we are going to learn a lot from those drugs.

Mr WATTS: The committee has heard evidence that research into prevention behaviour and the evaluation of the effectiveness of prevention messages should be key research priorities. Does the NHMRC support research into this behavioural side of preventative medicine?

Prof. Anderson : Yes, we will support any research relevant to health, and of course behavioural research is highly relevant. A lot of our research is in generally in the prevention area. I would not want to overemphasise this, but some of the prospect of personalised medicine and a better understanding of people's genomic profile is that we will be a little clearer on what preventative processes help you versus which ones help me. Again without overpromising, understanding a lot more about our genome means that we will be able to understand more about how our environment affects each of us as an individual. Of course, prevention is very largely around our behaviour, the structure of our society and social and economic inequities and so on, but knowing more about our genomic profile will mean that a lot of the prevention can be more specific and better targeted.

Mr WATTS: Is that just in the sense that we will better understand genetic predispositions, or will that research inform behaviour?

Prof. Anderson : I am not going to get into genes and behaviour. I think it is a minefield. There has been some research recently about people from Scotland, particularly, with pale skin and red hair and the genetic propensity they have to be more susceptible to melanoma, for example. So it is going to be that sort of thing. It will reinforce the message that 'I really am more prone to bowel disease' or whatever disease it is.

Primary prevention is still around our behaviour as human beings.

Mr WATTS: How would you go about prioritising research in that behavioural prevention bucket compared to the treatment response bucket?

Prof. Anderson : We prioritise on the basis of quality. We fund research around three criteria. One is the scientific merit of the particular application. No matter how important the area might be, if you fund poor research it is not going to give you any answers to anything. That is the first thing. The second criterion is around track record, which is about people's proven ability to deliver high-quality research. The third is around the innovation and the relevance of the research, and I think that is where your question impinges—on the relevance of the research. So it is up to the researchers to convince their peers—not us bureaucrats but their peers, who make this decision. This bunch of behavioural researchers look at this bunch of behavioural research and say either, 'Gee, that is really novel and different and I can see how that will make a difference,' or, 'That's not very novel and it has already been done. Even if you prove this, how are we going to make a difference? So what is the relevance?' The priorities at the end of the day are decided by other researches, boosted by international researchers as well on our panels.

Mr WATTS: I imagine that kind of behavioural research would be highly contextualised in Australia. It would rely on social determinants, many of which would be unique to us, whereas the basic research could have broader application. Given that, is there any sense that we ought to be funding more behavioural research because we are the only ones who will do it and we can free-ride to some extent on basic research internationally?

Prof. Anderson : It is a really interesting question. There is no doubt that, at the basic level, being internationally connected is really important. That is why we put $25 million into the International Cancer Genome Consortium and why we bring international peer review. I think I would broaden your question, though, beyond behavioural research to health services research and public health research generally, of which behavioural research might be just a component.

We do have specific funding schemes—Partnerships for Better Health funding schemes—where a service delivery body, a policy body, a state or territory health department, an NGO or a private sector organisation can partner with researchers and us to answer the questions that they have. That is entirely for research of the most applied type, if I could put it that way. So there are two separate funding schemes for that. Similarly, there is a separate funding scheme for people who think they have a commercialisation opportunity. They have done a bit of fundamental research with funding from us and they say, 'This little compound looks pretty good.' We cannot fund the D part of R&D, but we can fund the proof of principle first step. That is usually with a private sector organisation who is willing to put a bit of money on the table for the opportunity.

In general, at the moment NHMRC's funding is about 50 per cent applied and 50 per cent basic, but in some of the basic there would be some very basic behavioural research too, looking at paradigms modelling—that sort of investigator initiated research: bright people with bright ideas looking at the future, which is what basic research is.

Dr SOUTHCOTT: Thank you for outlining the criteria under which you decide what research proceeds. As policymakers, we often hear that the NHMRC should dedicate so much money to this area or that area. It is a common thing that comes up. Would it be desirable? How would you respond to that?

Prof. Anderson : We think about this a lot, and I meet very frequently with other health advocates or with those in areas of research—I met with my ex-colleagues in cardiovascular medicine just on Friday. There are a few things to say. If everything was given a priority, a lot of things would be given no priority, and it might be that the no-priority areas that get squeezed out are where the biggest promise might be. Who would have given priority to stomach ulcers and gastritis back in the past? We thought we had solved it. We had made drugs that we provided to patients and we gave them some treatment; they had to take it for the rest of their lives, but there was a treatment. Then these interesting guys from Western Australia came out of the blue and said, 'Actually, it's mostly a bug and if you kill the bug you treat the patient.'

Priorities mean that money is given somewhere and taken away from other areas. So we mainly rely on the best people with the best ideas—sometimes called 'investigator initiated'. If you look at what we fund, cancer is the biggest area; cardiovascular is the next biggest area; mental health is the next biggest area. Australian researchers live in the Australian community, and so they look into the things that the Australian community really suffer from.

Having said that, there are some things that we do need to give priority to, but they tend to be narrow—they are really picking up on Mr Watts's question in a way: there are some things that are relevant to Australia, and they are usually in the delivery of services research, and we call those 'targeted calls for research'. We have a few of those each year. We have done one recently on hendra which is a bit of an Australian problem. We have just finished one on foetal alcohol syndrome. We have got a live one at the moment on youth suicide in Aboriginal communities. So when a very Australian focus and need is brought to us by our advisory committees, we will run that.

Dr SOUTHCOTT: So you have the three criteria that you set up, but you do have the capacity to look at Australian-specific problems?

Prof. Anderson : Correct.

Dr SOUTHCOTT: The committee heard evidence that NHMRC funding for basic research on melanoma is very limited. We heard that from Professor Mel Ziman in Perth. Would you care to respond to that?

Prof. Anderson : Very limited?

Dr SOUTHCOTT: We heard that NHMRC funding for basic research on melanoma is very limited.

Prof. Anderson : I am happy to share with the committee, if you wish, a full list of the grants. They are mostly basic research, actually, on melanoma. Perhaps that is different from our general area which is pretty much split fifty-fifty between basic and applied. But in melanoma it is more basic, and that is probably true around the world, where we are trying to get to grips with why those particular skin cells in those particular patients go rogue at some particular stage, because we really do not know that. But, if the question implies some bias against basic research, I think we normally hear the opposite—that people feel that, if anything, we have a bias towards. I am trying to explain we do not. We have those three criteria, and they apply to all research regardless.

CHAIR: During this inquiry we have heard testimony that there are fairly fundamental questions about vitamin D that remain to be answered. What work has the NHMRC supported to help resolve this matter, if any?

Prof. Anderson : I will have a quick glance at my notes. I prepare these for Senate estimates each time, in case I get asked such a question. I am aware of the controversy. Of course, controversy usually means that the questions have not been answered and so more research is required, so we are very grateful to the parliament for providing more for our research. But, rather than me fumble around it, why don't I send the committee a list of the research we are funding in vitamin D and a short description of each? Off the top of my head, I do not have that information.

CHAIR: Also, during this inquiry, the committee has heard testimony that public funding for clinical trials is getting harder for researchers to access, leading to more reliance on funding from private industry. Would you agree with that?

Prof. Anderson : There have been a lot of questions around clinical trials generally in Australia and the cost of them. Medicines Australia, again, have often raised this with governments over the last couple of years. We have worked with the Department of Industry to try and streamline this. We have certified, I think, 40, or maybe a little more, high-quality ethics committees around the country, and some of them specialise in cancer. So it should be possible to go and get one-stop ethics approval.

The delay is often then at the individual hospital level, because each individual hospital needs to authorise use of their resources and the patients at their hospital in terms of clinical trial. All these things do add costs. All I can say is that, at the NHMRC, our funding of clinical trials has risen about 10-fold over the last decade, so it is now a very large component of our total funding. But our funding is, after years of increases, now flat, and so the proportion going to clinical trials is likely to remain what it is, which is one-eighth of the total—around $100 million a year.

CHAIR: We also heard evidence that there should be a separate funding mechanism for clinical trials. Would this be feasible and desirable or not?

Prof. Anderson : We run separate peer review for clinical trials, so we have separate committees that are expert in clinical trials themselves and assess them, with clinical trials experts on the panel. So, in a sense, it is separate that way. The question might imply: should there be additional money and so on? I would say, as CEO of the NHMRC, that additional money is always welcome.

Like all forms of research, whether it is clinical trials, whether it is behavioural research, whether it is molecular biology or whether it is clinical research, we have an obligation and spend a lot of time making sure that the peer review mechanisms are appropriate for that particular form. I have described the three criteria, but we make sure that the people looking at those criteria are relevant. So, for the clinical trials that come to us—and our peer review started this morning for this year—we have people who are expert in clinical trials, can do power calculations, know about recruitment and know about the ethics side of it. Judging behavioural science we have the behavioural scientist and so on. So it is separate in that way, but it is not a separate stream.

I would caution against that because, for good clinical trials to be asking the right questions, they need to tap into the best researchers in the country, and people like Professor Kefford, who I mentioned, but hundreds of others, work in clinical trials but are also in the clinical science stream. They have a molecular lab, so they take samples from patients unfortunately afflicted with disease down into the lab to try and understand the genetic and genomic profile.

In the 21st century, research is very connected up. People put big teams together. Our grants in public health research have more than five investigators as chief investigators as a normal occurrence. So I am, in general, opposed to taking an area, hiving it off and separating it from the very dynamic, rapidly changing world of health and medical research. Most clinical trials these days involve laboratory based science as just an integral part of it all, and so it would be a bit artificial to say that it was a completely separate activity.

CHAIR: Does NHMRC have much interface with the public at all?

Prof. Anderson : Our researchers do, of course. We just have a little band of folk, over in Acton, doing their best. We have a lot of information on our website for the public. We are not resourced for an outreach program on our research, but we do ask our researchers—8,000 to 10,000 people we fund around the country and around the world—that they have an obligation to communicate with the public. In fact, we have a specific policy on this, about involving the public and consumers in their research. In terms of judging track record, we do take into account whether people are engaging with the public and patient groups, but we do not run and are not funded for running public-health campaigns.

CHAIR: Every time there is a media release about a new wonder drug, which gives people hope, do you see it as being effective or not effective—and do you get contacted by people; I know we do—and is it helpful or not helpful for those announcements to be made?

Prof. Anderson : It is a very serious point you have brought up and one that I am becoming increasingly concerned about. I can understand why scientists or, more often, their organisations want to put a public message out but in medicine generally, and in research as well, honesty and truth are at the centre of what we should do.

We and our cousins at the Australian Research Council have something called the Australian Code for the Responsible Conduct of Research. That does point out that in everything scientists do they must be completely honest. We would take it very seriously, if something were brought to our attention, that somebody we fund because we have a lever there was not being truthfully brought to the public's attention.

I am sure I do not have to explain to the committee that what a scientist says and what is reported are not always necessarily the same thing. I and my colleagues around the world heading other big publicly funded medical-research organisations are concerned about this. We have discussed several times at our annual meetings the issues we all face. It is very easy to give false hope to people who are suffering from very nasty diseases, and scientists have to be honest. I would also make the point that it is not usually the scientific part of the health-care system that gives this a false hope; it is other areas that perhaps are less evidence based than medical research.

CHAIR: Out of curiosity, do you know anything about EBC-46, EcoBiotics?

Prof. Anderson : No, and I think it is one of those questions I should not answer. If you would like me to follow it up with my staff—

CHAIR: We have had the witnesses. I just wondered whether NHMRC had interfaced with them at all, because I believe they have had some serious funding for trials from the Queensland government.

Prof. Anderson : There are many other sources—childhood-cancer councils and so on. My general rule-of-thumb advice about this is: has it been peer reviewed by other leading scientists? That is the first question to ask.

CHAIR: I think they are entering a clinical-trials phase now. Thank you for coming today to assist the committee. If you have been asked to provide additional information or feel there is additional information that would help our inquiry could you please forward it to the secretariat by Monday 11 August. If the committee has any further questions they will send these in writing to you through the secretariat.

Proceedings suspended from 11:29 to 12:04