Hello, everyone, and welcome. My name is Elizabeth Deveny. I'm the CEO of Consumers Health Forum. And I'd like to really warmly welcome you to our webinar today on the future of research and the governance of research in health, and particularly, the role that consumers might play. I'd like to start by acknowledging that I'm on Wurundjeri Country and I'd like to pay my respects to Elders past, present, and also those that are emerging. Very important week this week, NAIDOC Week. I'd like to acknowledge NAIDOC Week and all Elders from communities all around Australia. I'd also like to give a special welcome and acknowledge the presence of all Aboriginal and Torres Strait Islander people who have joined us today on this webinar. We're so grateful to have you with us as well. So, this webinar is here to help us all better understand what's happening in relation to health reform in the research space. And there are lots of things that can be reformed always. One of the first things that the government is considering is they're looking at the governance, how we govern our health and medical research.
Currently, many of you will know we have two organisations that hold a lot of the funding, the MRFF and the NHMRC. They work together, we'd like to think, in harmony, so that we get the best possible health and medical research in Australia for Australians, and indeed, sometimes people from other countries benefit from the research that's undertaken. So, the process for today, I'll just run you through what we're going to do. See a new slide there come up. Thanks, Jacquie. We've got, after my brief introduction, we've got a panel of speakers who will talk to you about what's actually happening, what the process looks like, and also what they've learned already from the roundtables and other interactions and consultations that have been had to date. So, you'll get a sense of what other people have been saying and thinking, and what the key issues are that the government is considering. After that, we've got two consumer speakers, who'll give you a sense of what they think might be important to consider in relation to how health consumers and health consumer organisations are engaged in this work.
Now at that point, we'll have an opportunity for questions. So, you'll see on that slide there is a section that has a little QR code. This is for Slido. I'm sure that many of you have used Slido before. If you haven't, it's a web page where you can put questions and also vote for questions that you want the panel to answer. So, what I'd encourage you to do now, if you haven't done it already, is get that QR code, click on it, join it, or join it at slido.com for any of you that find QR codes are difficult to access. And the number for this particular one is # and then 3826731. It's on the slide, but I'll say it again, it's #3826731. So, let's have a look at our panel, so you get to see everyone's smiling faces now. So, we have Anne and Phillip and Masha all here representing the Department or the government in various ways. And when they speak, they'll let you know which roles they hold. And then we also have myself and Shyam and Anthony speaking from a consumer perspective. So, there's the six of us.
So, we're absolutely delighted to be able to spend this time with you today. So just to check that everyone's got their Slido working, hopefully you have. We're going to put a question in the Slido right now, and what we'd like is everyone to answer it, to check that it's working for you. So, our question is really simple. It's, what's the weather like where you are today? So, you'll see the questions there, and then feel free to comment or vote that question up. I'll just give you a minute to do that. If you haven't already got onto Slido, you can get onto Slido. Great. I can see a few people have put there; we've got all different kinds of weather. Haven't seen snow yet, though I've seen foggy. Still waiting for a few more. There's plenty of us online. Just have a go at using Slido. Pop in what your weather's like. It's good to just get a sense of how it works. Oh, sonny’s the leader at the moment. More sunny responses than anything else, but a few foggy. And you can use the like button to vote up an answer.
So, if you're foggy, you can just click on that little thumb and then another foggy gets recorded, it can save you doing the typing. So, if you like an answer, you can like it and then it goes up the list. The ones that get liked the most are the ones we notice. And when we're asking for questions from the panellists, the ones that get the most likes will be the ones we'll start answering. So, I've got one more question for you all before we move across to the speakers, just to really make sure you've got the hang of that Slido. So, we'll put that second question up now. And the second question is really to ask you, whose country are you on today? I've said I'm in Wurundjeri Country. I can see someone's in Kaurna Country. And others, a couple of others, all have commented on the country they're in too. It'd be lovely to know where you're actually calling in from today. So let us know where you are today. I'll just give you a moment to do that too. It's always really terrific to see the different places that people are.
It does help us feel connected when we're having this kind of virtual experience. Someone's on Turrbal and Yuggera Country, someone's in Gadigal Country. Fantastic. Another person on Wurundjeri Country. Hello, whoever you are. Whadjuk. Oh, so many places. Terrific. Thank you, everyone. Keep them coming. Let's see how many different countries we can be on. Where are we all from today? Ngunnawal Country, I was there early this week. Ngunnawal and Ngambri Country. Fantastic. Keep them coming, folks. Some of you have got anonymous on. You may not have realised; you can put your name there as well. If you'd like to do that, you're very welcome. This helps when I ask the questions. I can say it's a question from Christine, or it's a question from Ben, or it's a question from Huang. Then you'll know that your question is the one that we're asking today. So, more countries coming up. A few more lands that were never ceded, indeed, always was and always will be. Fantastic. Still just wait for a couple of more people to work out how to get that Slido happening, and either put in what your weather's like or what country you're on.
It's really important to us that we hear from you and understand what it is that you, what are the questions you want to ask? Of course, this reform is not occurring in isolation, we have a government that has an interest in broader health reform. So, these things will play out in parallel and may influence each other, of course. There's also the next iteration of the joint statement on consumers and research that my organisation, Consumers Health Forum, and the NHMRC are working on together. That work started, and our consultations begin in August. So, any of you online that are really keen to be involved in those consultations, you can stay tuned in social media and you'll find out about them. If you want to go on a list that we've got, I'd ask you to just go to firstname.lastname@example.org. That's our info line. Just send an email, perhaps put in the heading something like, you know, joint statement consultations, or interested to be in the August consultations on the joint statement on consumers and research.
And then we'll put you on a list. And when the next, when the information comes out about exactly what the consultations will look like, where they are and how you can engage, we'll send a group email out to everyone who's expressed interest today. So just send to email@example.com, and then we will make sure that you find out about those consultations. The other thing worth noting is the MRFF has recently developed principles of consumer involvement in research funded by the MRFF. If you're interested to have a look at these principles, it only came out a couple of months ago, I think it was about March when they came out. If you go to the Department of Health website and then look for those. So, there's a search bar there, and just put in principles for consumer involvement in research, or some of those words, it should come up pretty easily for you. And then you can have a look at that document as well. So, there's always activity in this space separate to the research that involves consumers as well, of course.
But today, we were going to really focus on, the consultation really focuses on the governance and the proposed changes to governance models for the NHMRC and the MRFF. And we look forward to hearing from our speakers. So, I'm going to throw now across to Anne, who's going to begin the formal presentation. Thanks, Anne.
Thanks very much, Elizabeth, and good morning, everyone. I'm Anne Kelso, CEO of the National Health and Medical Research Council. I'm joining you from Ngunnawal Country in the Australian Capital Territory. Really pleased to have so many people joining us today for this webinar, and also very pleased that we have this opportunity to engage specifically with consumers during this consultation. So, the two funds we're talking about are the Medical Research Endowment Account of NHMRC and the Medical Research Future Fund. And together, these two funds now deliver more than $1.5 billion per annum for health and medical research around the country. Now, that's a pretty substantial sum of money. And while all of us always want more, we really value every dollar of that 1.5 billion. And it's critical that we use those dollars as effectively as we can to undertake the research that Australia needs today, but also in future, so that we have continuing improvement of our community's health and wellbeing.
So, the research that this money needs to encompass is very wide ranging. It covers all sorts of types of research and fields of research, from discovery, often at the laboratory bench, through to research to improve clinical care, the delivery of health services for direct patient benefit, also to inform all sorts of public policy that has an impact on population health. The sort of research that is funded needs to include support for translational research, whether it's directly into policy and practice or via commercial pathways. It also includes research to address the specific needs of the diverse people and communities that we have around this large country. Whether we want to address the problems that we can identify today or have the capability and flexibility to respond, whatever the future is going to bring. Now, the purpose of the consultation, as Elizabeth has already said, is to discuss models for the governance of the MRFF and the Medical Research Endowment Account, the MREA, so that we can make the best strategic use of those two funds for all of these purposes that I've already outlined and take the administration of the funds to the next level.
We know we need a really open conversation with the whole community, everybody who's interested in this issue, so that we get input from many different perspectives on how to do this best. Researchers have been talking to us for a long time about the management of the MREA and the MRFF, but it's really critical that we also hear from consumers and others who have an interest, both in the process and in the outcomes of research. And that's what we're trying to do through this consultation. It's also being undertaken in the context of a pending review of the MRFF Act, which is being delayed slightly to enable this consultation to take place. There'll also be, in future, and hopefully not too far away, the development of a national strategy for health and medical research. And I'll just mention a little later a little bit more about that. So, for those who aren't already deeply familiar with these two funds, this slide shows what they are for. The Medical Research Endowment Account, the MREA, is the fund from which NHMRC grants are delivered.
It receives its funding each year through the federal budget and with a projection through the forward estimates. And currently, that's approximately, approximating $900 million per annum, and that's specifically to support grants for medical research and public health research. NHMRC, as you probably know, has been around for a very long time, I think something like 85 years now. And it has an established place in the delivery of competitive research grants to the sector. And particularly, that's in universities and medical research institutes and hospitals. As CEO of NHMRC, I report directly to the Minister for Health and Aged Care. And for NHMRC, the strategy, the priorities and the policies for the expenditure of the MREA are developed with the advice of our Council and a range of advisory committees, all of which have consumer representatives. The strategy is then approved by the Minister and it's published each year in our corporate plan.
Now, a really key point here is that most NHMRC grants are investigator initiated. And that means that applicants decide for themselves what they wish to work on, and that's often influenced by their own experience in health or in their health profession. And then they compete for funding in the larger pool to support the projects, the researchers, the teams, the collaborative networks they need to undertake that research. Now, the grants can be in any field, provided their ultimate purpose is the improvement of human health. So, in practice, NHMRC grants can range across that spectrum from basic research and discovery through to clinical public health and research to how to improve health service delivery. It covers discovery, it covers translational research, it includes clinical trials, it includes early-stage commercial research and partnerships with health service providers and policy makers. So having been around for so long, this Commonwealth funding through NHMRC has contributed to Australia's very strong reputation in health and medical research, and overall, to our situation as one of the healthiest countries in the world. Of course, we know that's not evenly spread health across our community, but overall, we are doing well, and our research system has contributed enormously to that.
But it was recognised quite some time ago that this model of research funding is underdone, it's undercooked, when it comes to priority-driven research directed at meeting the specific needs of the community and of the government of the day. So, if you were trying to imagine an ideal funding system, you'd have a balance between investigator-initiated research of the type that NHMRC does, which we think of as bottom-up research, and priority-driven or top-down research, as we now have in the Medical Research Future Fund. So that's part of the reason that the Australian Government established the MRFF back in 2015 with new legislation. And it's really quite from an international perspective and an innovative approach to redressing this imbalance, and also establishing a perpetual source of funding for medical research and innovation.
So, the MRFF now is fully capitalised at more than $20 billion. And then the government draws down 650 million per annum at the moment from that fund to support medical research grants. But the critical difference from the MREA is that these grants were awarded in priority areas that are determined by government on the advice of the Australian Medical Research Advisory Board, AMRAB, following a national public consultation that's held every two years. And I know at least some of you have participated in those consultations that have occurred already since the birth of the MRFF. The funds are then delivered through a range of missions and targeted calls and some quite innovative approaches to funding, such as the Frontiers Program. And, like NHMRC, they support a very wide range of types of research topics. But the emphasis is more on translational research and innovation. Unlike the MREA, delivery of the MRFF is overseen by the Health and Medical Research Office in the Department of Health and Aged Care that's headed by Dr Masha Somi, who will talk shortly, and using grant services that are provided either by NHMRC or by the Business Grants Hub.
So, what's the problem that we want to address? We have more money than ever before for health and medical research coming from the Commonwealth, and we have both bottom-up and top-down research as a result of having these two distinct funds. The MRFF's been going, as I said, since 2015. So that's had quite some time to settle down. But it's a good time to ask the question of whether things can be done better now that we really understand what the MRFF is. A lot of progress has been made in establishing this large and complex fund. And I think many of the issues that people expressed very early on in its instigation have now been addressed. But still, we're hearing from stakeholders that there are a number of issues, and they are important ones. The major ones are outlined on the slide and they're elaborated in the discussion paper. Now, some of these issues just flow directly from the fact that the two funds are managed separately through different government bodies, NHMRC and the Health and Medical Research Office in the Department.
And their strategies are developed separately through different consultative processes. And while we interact a lot between our two offices, there is only limited formal coordination between the two strategies. There are also many overlaps in the types of research funded by the two funds. And I think for many people, there's still a lack of clarity about their distinct purposes. So, we find that users are calling for greater coordination of grant topics and funding cycles, also of application requirements and funding policies so that the workload of applying for and reviewing applications for funding each year through the two funds are minimised. Across the board, we recognise, and I think everyone recognises, the need for greater consumer and community involvement in setting priorities for research, but also in the design and conduct of research. I think from our perspective anyway, there's been a lot of progress in recent years, and that's been very strongly encouraged by many members of the consumer and community representative community.
And I know a number of you are on this webinar today, so we really appreciate the advice and the encouragement that you've given to make this progress. And I think we also recognise that there's still a long way to go. And that's a process of learning and growing both within the funders and within research organisations. Again, your advice and guidance here is just crucial. We also still have a long way to go in fully integrating research into clinical environments and into public policy development instead of research being seen as something that's kind of on the outside that you only do when you've got the money for it. We also see the importance of integrating research and connecting research more to commercial R&D, so that we can strengthen local development and exploitation of Australian innovation. So, these last two issues, consumer involvement and embedding into various environments are relevant, particularly to a future national strategy, but they also speak to governance. The earlier ones on the slide, particularly relevant to this consultation on governance and administration of the two funds as well.
So, what's the goal of the reform? We've gone through some of the details, and these are some of the issues that have been raised and that we are clearly keen to address through reform. But I think the overarching issue is, how do we make the best use of the MREA and the MRFF together to undertake the research that we need for the future health and prosperity of the whole country? That means research that's informed by and involving the community. It means research that's efficient and effective for all users, of course, researchers, research institutions, government, industry, the community, and balancing the benefits of investigator-initiated research, which is often at the real frontiers of knowledge, often inspired by the problems that researchers see in their professional and personal lives but balancing with priority-driven research that's flexible and responsive to the needs of the community and governments. So, the ultimate goal is an integrated approach to funding that will deliver the research we need to address the health challenges of today, while also building the capability and flexibility we need to meet whatever health challenges confront us in the future.
We've heard from many people during this consultation how much they value the different approaches of NHMRC and the MRFF. And we note that. Masha will say more about that and some of the other things that we've learnt about in a few minutes. There are two stages to this consultation, and the first is about how to improve the alignment and coordination of the MRFF and the MREA to address the issues that I've just talked about. And that means the governance arrangements for overseeing the two funds, and that's advisory structures and accountability, but also then the administrative arrangements to deliver grants from the two funds. So that's what we're really here to talk about today. The second stage, which, as I said before, I hope will happen before too long, is the development of an overarching national strategy for Australian health and medical research. And that's going to need to involve not just the Commonwealth, but the states and territories, philanthropists, industry, all interested parties, so that we can really develop a truly national integrated strategy.
We know many people want to talk about the strategy now and it's very important that those discussions do start now because they'll be complex and there's a lot to think about. But for the purposes of today's webinar, we're particularly focused on the first stage of consultation. What we want to achieve is to be able to present advice to government on a viable model for the integrated governance and administration of the MRFF and the MREA, so that we'll be capable of delivering the grant programs that can then be consistent with the future national strategy. So that's all I want to say as a way of creating context, I hope, for our discussion, and I'll pass over to Phillip to talk about the three models that have been presented in the discussion paper and that we want to discuss with you. Thank you very much.
Thank you very much. And so, just to remind people, my name is Phillip Gould. I'm the First Assistant Secretary for the Health Economics and Research Division and the Health and Medical Research Office, which manages the MRFF, sits within that team. Thank you for having me here today. I'm really looking forward to the session. So, my job is a pretty simple one today. It's to present to you three models that we've put together to aid discussions around the governance of medical research funding in Australia. Now, wanting to be really clear here, that really when we've put these models forward, we've decided to call them models, not to call them options, because we're not looking to sort of choose one of three set options. Rather, we're trying to put forward some models which will help the discussion that we have, to put a little bit more clarity around the types of governance models which we could put in place. But please, you may actually look at these models and say, well, there should be a fourth model, which would be better than what you have. Or maybe we'd like some elements of model one combined with model two. So don't consider this sort of a set group of options from which to choose. Also, you might want to consider that as they stand, the models don't have a huge amount of detail around the advisory structures. So, I think during the conversation today, there might be some really good advice that we can get from this particular group around putting in place some suitable advisory structures for any of those models to help hear consumer voices and really put them into practice when it comes to plans for research going ahead.
Anyway, with that said, we have the three models. The first one focuses on better alignment through coordination. So, if we can go to the next slide, please. This would mean that the MRFF and the MREA continue to be managed separately. So that's as things are at the moment, but with a stronger emphasis on coordination and consistency and alignment between the two funds. So that would require us to put in place a mechanism, a more formal mechanism than we currently have, to ensure this alignment. So that could be alignment policies, better coordination of funding activities and potentially the advisory groups as well, and we would be interested to hear views on how that might actually work effectively. It would still mean that we have separate CEOs for the Health and Medical Research Office and the NHMRC, and they would largely retain current governance mechanisms, but again, very interested in discussion as to how something along the lines of model one could be implemented effectively with some changes to governance with a particular view on consumer involvement. One of the benefits of this model is low implementation complexity. So, it means that we could actually put this in place more quickly than the other models. We don't think it would require any legislative changes; it would be working largely within current structures with some changes. So that's model one. If we go to the next slide, please.
This would involve management of both funds via the NHMRC. And in discussions that we've had so far, I think people have been very clear to say it shouldn't just be a takeover, it should be more of a merged concept. And Masha can talk more about some of the feedback that we've had there. But any model along these lines, again, would be really wanting to keep the strengths of the two approaches, because we have heard throughout our consultations that there are unique strengths to both of those approaches, and that's something that Anne emphasised in her talk as well. This would mean that the Australian Medical Research Advisory Board would cease its operations, and NHMRC would be responsible for creating investment plans for both of the funds. Clearly, we would need to change advisory structures to support the operation of this particular model, and again, very interested in how in this model consumer involvement could be maximised and as effective as possible as well. We're probably putting this as something with medium implementation complexity. It's quite likely that this would require legislative change, which always increases the amount of time and the difficulty of putting it in place, but certainly something which can be done. So that's our model two.
And if we go to the next slide, this is model three, which we've been saying is really thinking, taking a fresh view of how things could be done. I'm talking about a blank canvas. If you could start again, what would you do that might be different? We're really cognisant, though, of the fact that some people might say, well, if I had a blank sheet of paper and I had a chance to redraw what medical research funding governance looked like, I would go for model three. And that's why I said before, maybe people have a model four or a completely different view. But this, for us, was actually saying, let's free ourselves from the current model and the current two fund approach and say, potentially we could have a single fund. Now, as we've talked about this model, there's been a lot of concern that the priority-driven research isn't crowded out by investigator-led, and vice versa. So, any model along those lines would need to be able to retain those two types of funding that Anne talked about.
This would really throw off the option of completely new governance arrangements. And one of the benefits here in having one fund would be that it would be a single investment strategy. As I said that single strategy can take into account those different types of funding, but that does simplify things and certainly does ensure cohesion. If we were to start again, I think it would probably be the most challenging to implement that, probably be a longer lead time before we could put that fully in place. And again, we'd be wanting to be careful because we do know that there are significant strengths in the current model. So, I'm certainly not wishing to throw the baby out with the bathwater on that. So that gives you a sense of those three models. Again, like I said, they're really just designed as mental models to help us kind of talk through potential issues. You might say, actually, any of those models can work as long as their advisory structures are in place. And again, that's helpful feedback on how that, on your views around that and how that might work in practice.
So, we're taking a very open-minded approach to all of this. So, that does it for me. I believe I'm now handing over to Masha to take you through some of the feedback that we've had and the consultation questions that are in the paper. Masha, over to you.
Thanks, Phillip, and hello, everybody. I'm joining from Ngunnawal and Ngambri Country and just wish to acknowledge that, and also Elders past, present and emerging and our Aboriginal and Torres Strait Islander colleagues who are here with us today. So, I'll quickly talk through the consultation questions before I move on to what we've heard so far. So, the questions are really designed, they're designed to support us to focus on what's working well, what we'd like to change and what we'd like to adopt. So really, they're probing questions that are focused on what the future could and should look like. As Phillip said, we're not looking to say model one, two or three is the model. What we're trying to do is road test what elements of those models are appealing to people and should be considered moving forward. However, we're keen to see if there are other things that we've missed as well, that could be incorporated moving forward. So, what have we had so far? We've had two webinars to date, and engagement with the NHMRC and the MRFF consumer reference groups and also a series of roundtables that have been led by ministers and also by the Department, and NHMRC.
And we're trying to reflect back to people what we've heard and to really show that this is a genuine consultation and all of the input that we're hearing is feeding into that future design and consideration. What I'll talk through, the purpose of the consultation is to go out quite wide and make sure that we hear from all different parts of the research sector and all the different interests that are out there. So, the main thing, really, that I've taken away from the consultations, we probably all knew it, but it's been totally reinforced, is that we have been bringing a really diverse set of views to the table. We've had engagement right across the sector from researchers, health providers and services, businesses, importantly, consumers and priority populations. A really key message that we've heard is that people really value having the two systems. So, the top-up investigator lead and the bottom-up... Top-down, I should say, bottom-up investigator lead and top-down priority-driven approach.
So that's a really recognised the significant value that people have in the system. We're also being asked to consider that reform should promote and build on what works well. So, we're a bit concerned that we might lose any valuable things, the things that are working well across the two funds. And we've been asked to make sure that we maintain what we find in a seamless …administrative issues, and address as much as we can as quickly as possible, with a focus on increasing simplicity, reducing waste and harmonising policy and rather than making things the same. We're also saying to us is that models two and three potentially look like a takeover. Now, they're not words that we've used, they're words that people have said to us. And what they're really asking us to do is really quite different things. And the key element is to try to take the best of those two funds and bring them together. So, let's not lose the great investigator-initiated research approaches, but also let's focus on the priority-led approaches and making sure that they're maintained.
And finally, it's really important that the voices of consumers that are already embedded in governance arrangements continue to be maintained and also to be built on moving forward. So, we want to make things better rather than maybe risk any gains that we've had through the arrangements that we have. We've been asked to consider a staged model. So, think about how we could look at transitional or incremental reform. And part of that is to make sure that we're mapping what we're trying to achieve and the steps that we would need to get there, but also give opportunities for consumers and industry and researchers and others to feed into that process to test how things are going. And the main aim of that would be to make sure that we're not accidentally losing any of the benefits that are really well recognised across the two funding systems. A comment too that any change, particularly with the extent of models two or three, will require change management and change management takes planning and time. So, we've really heard that message very clearly.
As Phillip said, we've been asked to think, potentially, of other models. So, please, if you've got other things that you know work well or other upgrade ideas that you have that we haven't thought of, please send those through. An example on the slide is in the United Kingdom, they do have two separate health and medical research funding systems. And the way that they delineate them is to have them focus on two different parts of the research pipeline.
Finally, I think what we've heard really, really strongly from the consultation process is that different parts of the sector see themselves in the two funds. So, NHMRC has this wonderful reputation of 85 years, as Anne said, of being involved in the system, building research capacity and capability and really taking Australia to be a global leader in research. What we're hearing though is that other parts of the sector has seen and valued some of the different focus that has come through the MRFF, particularly on priority populations and on unmet needs. And we've heard that clearly from groups such as people with rare diseases or advocates from rare diseases, from our First Nations colleagues and also from rural, regional and remote colleagues as well. And there's been an appreciation as well about, of the MRFF's additional focus on impact and the diversity of research team. So, obviously, the NHMRC also looks at this, but the MRFF has been able to do it in a slightly different way because we have a different focus on translation, and particularly, commercialisation.
And just a final note about the strategy, which is outside of the scope of this consultation. And what we've heard from people is it's kind of difficult to separate the strategy from the governance because those two things are linked. And we felt that we should start with governance to make sure that we've got our own internal Australian Government arrangements resolved and our accountabilities are addressed and resolved ahead of moving on to a national strategy. And all of the input that we've received about the national strategy through this process has all been collated and synthesised and brought together and we'll be using that as part of thinking about a national strategy going forward.
Next steps. We have written submissions available. Through this process, we're really seeking to have the submissions made by Friday the 14th of July. We are hoping that as many submissions can be made by the due date. However, we've heard from consumers that they're really keen to be involved and may need a little bit more time. And so, if you're having any challenges in meeting that deadline, please email to the email address, HMRconsultations@health.gov.au, and we'll consider those on a case-by-case basis. However, we've heard a very strong message that consumers are keen to be involved and may need additional time and we're really interested in facilitating that and making sure those views can be brought into the process. After the consultation feedback has been received, we'll be developing a written report that summarises everything that we've heard through this process. Some of it will be what I've presented at a really high level today. However, the report will be providing a lot more detail and that report will first go to government before it's provided publicly.
Today, we thought, you know, I talked earlier about the broader consultation questions today with you as consumers and this being your particular focus and interest in research, we wondered if we could frame the conversation around the governance and administrative structures that could support consumer involvement. So how can we enable consumer involvement in research governance? What's working well? What could be improved, and whether there are any administrative changes that could be made to enable more effective consumer involvement in research. So, thank you all. I'll hand over to Shyam.
Thank you, Marcia. Good morning, everyone. I'm Shyam, joining from Kaurna Country in Adelaide, South Australia. I'm a consumer engagement practitioner, also a researcher with NHMRC funding, but more importantly, a consumer with lived experience of kidney transplant, and uses Australian healthcare regularly, but benefited more from health and medical research. Thank you all for joining us today in this crucial topic of consumer engagement in the funding that MRFF and NHMRC deliver. But before I begin, I want to acknowledge that my voice is just one among many, and all of which deserve to be heard. It is imperative that we as consumers have a say in the process. So, as Masha mentioned earlier, I kindly request the CHF and NHMRC and the Department to provide additional avenues for consumers to contribute their insights. I think, first and foremost, I believe this reform is timely. It presents a once in a generation opportunity for consumers to reshape the narrative on how our money is allocated to health and medical research.
We need more than mere procedural or policy changes within health and medical research organisations and universities. We require a radical overhaul of the structural and governance aspects of consumer engagement in Australia. Therefore, it is crucial to involve consumers in all five features that are addressed in the proposed models, for example, in governance, accountability and advice, in strategy development, in administration and implementation complexity. I took a closer look at all these models, and I have favourites as well. But for example, in model one, we have a better collaboration and coordination between MRFF Consumer Reference Panel and NHMRC's Consumer and Community Advisory Group. And in model two, NHMRC will continue to work with its advisory committees and the Consumer Health Forum to progress the policy statement on consumer involvement in health and medical research. But also, I find that each one compromises components that can be replaced or interchanged to develop a completely new model. As Phillip mentioned, we can have a model four as well.
And the beauty of adapting a nuts-and-bolts approach is that it enables us to tackle critical issues early on. For instance, by addressing governance and administration prior to developing a national strategy, we can resolve questions such as, who should be responsible for consumer engagement in a medical research institute, and how to allocate budgets for consumer spending. I think transparency and accountability are paramount in consumer engagement. To achieve this, consumers must be embedded in research organisations, assuming leadership roles. We must move away from powerless nametags like advisory groups and steering panels. Instead, we should establish positions like lived experience directors who possess real power and decision-making authority. In order to accomplish this, we need to build the capacity of individuals with lived experience. It is essential to nurture individuals who can effectively communicate and influence stakeholders.
We must empower them to develop collective responses and articulate solutions. We are not only the end users but should also be an agent of change with more power and autonomy. We want our stories to be heard from bedside to boardrooms. By enhancing the capacity, we enable consumers to become these agents of change, not just end users. And I would like to invite all the consumers to seize this moment and play a vital role in this decision-making process. In conclusion, I want to say that by embracing transparency, accountability, and capacity building, we can transform consumers into empowered individuals. Let us forge a future where consumer engagement is prioritised, and our health care truly serves the needs of all. Thank you so much.
Thanks so much, Shyam. I'm Anthony Brown. I'm the Executive Director of Health Consumers New South Wales. And I'm coming to you today from Gadigal Land in Sydney. At Health Consumers NSW, over the past, well, the past five years, but particularly the past two years, we've been really involved in looking at what we need to do to build the capacity both of consumers and consumer organisations to take up some of those leadership roles which Shyam was talking about and also looking at what's needed for research and research organisations to build their own capability and capacity to work with consumers. Many of the points I wanted to make have been said much better and much more powerfully by Shyam. So, I'm not going to really add much to that except to say that I really endorse the idea of looking at how we move from advisory roles to making sure that consumers and consumer representatives have those leadership roles in whatever structure is being proposed. So, part of that, I think what's really needed and what's been missing in a lot of the conversation is the need for both structures and eventually the strategy and the resourcing that sort of flows from that into looking at how we build the capacity of consumers and consumer organisations to be more involved and more central to the conversations and involved in leadership roles.
One of the things that, I think, the current structures have and that a lot of, I think, consumers, particularly consumers new to the research space, feel is that a lot of these structures and systems feel like closed systems. They feel like you almost have to be part of the process, well embedded in research already, to have insight or be able to be involved. And so, any new structures that we move towards must, yes, have consumer leadership strongly embedded within them, but also must remain flexible and open enough that they can hear the voices and the concerns of consumers and communities that, you know, we don't that we aren't very good at reaching at the moment. And I think anything that maintains, yes, that balance between priority-driven and research-driven research is really important, but again, what's missing at the moment, I feel, in current structures is the ability of community of consumers, and particularly people from smaller communities, be that rare diseases or small rural or regional communities, to actually have an influence in research and for their priorities to be better understood and researched.
So, I think while new processes have to be able to, as I said, be flexible, open, porous enough to hear from those consumers and communities and those communities where perhaps there isn't the policy sophistication or the deep understanding of research that we see in other leadership areas. So, yes, I'm really keen to hear what other people have to say, really support the idea that we need as many voices as possible during this conversation and in the final structures. And what's really needed is, as I said, as part of both this and the final strategy, is a commitment to building organisational and individual capacity to take on those leadership roles. So, I'll throw it back to you, Elizabeth, to facilitate the panel.
Hi, everyone. I hope you enjoyed those presentations. There's a lot to absorb from everything that was said. Shyam, you're getting a heap of high-fives in the Slido chat, if you haven't seen them already. So, I'd encourage those of you who haven't yet joined the Slido or haven't yet engaged with the Slido, hopefully you're all looking at that to do so now. I have provided a couple of answers in there, but just so that, you know, yes, it's been recorded as is the normal process. This will go up on the department's website. Once it's up on the departmental website, they will make sure that people are aware in the usual way they do that. In addition, CHF will also put it out on our social media channels. So, if you look at our Twitter, LinkedIn, Facebook... our web page, and so on, we'll have details there. I've also put the email address for CHF for those that wanted to be involved in the consultations about the joint statement on consumers in the chat, it's firstname.lastname@example.org but you should be able to find it there.
Thank you to those people who've already emailed us asking to be involved with making a list and when we know more details about the consultations, we'll make sure that you know, so that we can have consumers represented in those consultations. So, I'm going to now start asking the questions that have been asked, and I'm going to ask the panel members to respond to those questions. And we'll do it pretty much from the most popular to the least popular. So, go to Slido if you haven't already. You can vote the questions up. We won't have time to cover them all. But please note that both CHF and the department and I suspect many others who are here on the call today will be taking note of the kinds of questions that people are asking. But we'll start with the ones that have got the most interest and we'll go from there.
And the first one I'm going to talk... I'm going to ask you first, Masha, there might also ask Anne for her view, because it asks about the current models that are being proposed. So, this is a question by Penelope. Hello, Penelope, and thanks for your question. So, the discussion paper offers three governance models which have been outlined for us today. And Penelope's question is, "How much scope is there for the consumer roles to be different to those that are outlined in those three models?" So, Masha, I'll go to you first. And after you've answered them, we'll go to Anne in case she's got anything she'd like to add. Thanks Masha.
Thanks Elizabeth and hi, Penelope, thanks for your question. So, when Phillip said that there are models and ideas, that is actually a fact. It's true. Some people have suggested to us that maybe we have something in a bottom drawer that's ready to go, that we'll be proposing and putting up to government, and we don't. This is a really genuine consultation and we're really keen to hear your views. We're really keen to hear views from right across the sector. I think it's become quite clear to us through the conversations that we've had today that the three models are too flat, and people are really looking for something that's potentially a composite of them or adding new or different elements into the mix. So, those are the models that will be sort of leveraging the conversations. We'll be seeking the input and feedback on the models that have been proposed, but we don't anticipate they'll be implemented as they are. And so, if you've got great ideas of things that we should be considering and putting forward in the options that finally do go to government, please put those in, through a written submission and know that we are genuinely listening and will be factoring in all of the advice that we're receiving through the consultation process.
And I'm not sure, Phillip, if you would like to add something?
Thanks Masha and thanks Penelope. I really don't have anything to add because, absolutely, these are just models for discussion. And so, getting feedback about what looks good and what doesn't is incredibly helpful. So, absolutely nothing is fixed in stone and we're listening hard. Thanks.
Fantastic. So, the next most popular question we have is about diversity and I'm going to throw to you, Anthony, after this question, and perhaps Shyam, you might like also to chime in because we're keen to think about the experience you've had in your role in engaging diversity of consumers. So, the question says really, "Consumers are grouped in under one category in the models currently, but actually there's a huge diversity in consumers. There are subsets, groups, different communities, different interests. What is being done?" And I might kind of slightly rephrase that for you, Anthony, and Shyam, which is, "What could be done to ensure that there are a diversity of consumer voices in this consultation and also in the reform that might occur." So, Anthony, first you, then Shyam, thanks.
Thanks Elizabeth. I mean, and that's always one of the challenges that we're all facing around how do we make sure that we're hearing the voices and evolving, you know, as diverse communities as possible. So, there's no one right way to do this, and one of the challenges, of course, is that when people set up an advisory group or some sort of community structure like that, which we should do and we should definitely be committed to, but no group can contain the full diversity of the community. And whether that's diversity of the things that we usually think about. So, Aboriginality, ethnicity, language spoken, those sort of things, or whether it's diversity of different health conditions. So, one area where we've seen good work happening is actually partnering with and connecting with relevant community and consumer organisations that are made up of groups we want to talk to. So, whether that's Aboriginal controlled organisations, whether that's community-controlled organisations, whether that's consumer and carer groups that are working, you know, with particular conditions or made up of people from those communities.
So, partnership with existing organisations is one way to do it. Also realising that any work with consumers, of building consumer engagement especially engaging with a diverse group has at its heart, it's about relationship building, and that's about, we need people who have to have a commitment to connecting with other people. And structures and processes are all really good and really important to support that. But that sort of structural sort of approach can only, can never replace. It has to be founded on a commitment to building relationships with others on an individual level. So, look, I don't know if that's really answered the question, but I think a good starting point is to reach out to the various organisations that are already in the community. Some may not be active in the research space yet and might need some support to develop their capacity and capability to do that. But many are willing, and organisations like CHF, like SAHMRI, like Health Consumers NSW, can definitely help make some of those, you know, introductions.
So, thanks for the question and I would like to echo Anthony's comment as well. But one thing Covid taught us is no one is safe until everyone is safe. And that is similar with consumer engagement is, you haven't engaged with anyone until you're engaged with everyone. And that includes diverse population. But in Australia, diversity is a fact. But inclusion is a choice. We have to change that narrative because we have people from more than 200 countries and one in four are born overseas and in the US, they are actively taking steps especially in clinical trials area, for example, the Biden administration and the FDA released a white paper saying in clinical trials how diverse the population is. So, there is no excuse if you can't translate a document because the participant can't speak other language. So, that's where the crux of the issue is, is to make a structural change that has to come from top down, where we have to talk about ethics and governance. When they're doing a clinical trial or when they apply for a grant, how diverse your population is.
Because if you leave it for choice, it will never happen. And that's why the power imbalances exist as well. And when we talk about diversity, diversity is more than skin deep. It's about people from rural, remote, and regional Australia and also about intersectionality because people who are more diverse have specific health issues and from marginalised population are still not engaged in consumer engagement aspects of health and medical research, which is really sad in a country like Australia because we have all these mechanisms, but that caters for very few people, and we have to move away from this. And there are a lot of things that we can do to improve because I always say if you want to have diverse participants in your clinical trials, you need to have a diverse consumer advisory board or a consumer leadership board because that reflects how truly you are in taking diversity to your heart.
And the other thing is, most of the researchers in Australia are from diverse backgrounds. We have to enable them and champion them to talk to the community and build trust. Because what's happening is we can't build trust at the speed of grant cycle like NHMRC grant cycle. We have to build relationship at the speed of trust. And to do that, we need community champions to be those trust builders. And that's one way to increase more diverse population in clinical trials and in NHMRC grants and other aspects of health and medical research. Thank you.
Thanks Shyam. Now, Anthony wanted to make one last comment on this topic, so I'm going to throw it to Anthony, then we'll come back I'm going to go to a new question then. Thanks.
That's great. Thanks Elizabeth. I just wanted to... that's such a wonderful quote. You know that engagement moves at the speed of trust, which is something we have to remember. But the point I wanted to make as well is that within the research community, there are not only diverse backgrounds from researchers who we can draw into these conversations. There are people and research organisations that are very good at connecting with diverse communities, and whether that's with carers, with Aboriginal people, with people with disabilities, people from LGBTI communities and I think some of those partnerships and encouraging some of those partnerships and recognising that some of this expertise, in fact, most of this expertise lies outside of the health and medical research communities and that we have colleagues in human sciences and in the humanities who are very good at this, have been doing participatory research for many decades, for over half a century in some disciplines, that we can learn from as well.
So, back to you, Elizabeth.
Thanks Anthony. Now, there are quite a few questions around funding. And Phillip, a heads up, I'm going to come to you first. People are asking about, "How is the community going to be resourced to engage in this consultation, as well as, more broadly in health and medical research?" There are comments noting there's a limited mention of how this resourcing or infrastructure would be put in place in the governance mechanisms. People are asking questions and I'll come to you for this one perhaps a little later and asking how the NHMRC engages formally with consumers. So, you can talk a little bit about what you do there. And one of the questions is, Phillip, so you might want to comment about whether or not there is or are any plans for providing further resourcing for consumers in this consultation and also in the models, as well as perhaps answer this question, might be easier for you, "What's the role of the NHMRC and or the MRFF to fund consumer and community involvement in their work?" So, over to you Phillip. Thanks.
Thanks very much and thank you for the questions. It's a complex area to respond to. I think one of the things I'd like to say right from the start is that there are, I suppose, two potential avenues for funding consumer involvement. And we've got to be clear on that. One is basically non-MRFF and MREA fund. So, money outside of that government, money outside of that, can be used to fund infrastructure and engagement. So, that's one potential source of funds and, obviously, it's not up to me how we do that. That's something that we would need to go to government for a decision on. But there's also funding potentially for more involvement actually through the funds but there are probably limited options for the way that we can do that. That said, I think it's clear from the discussions today that in order to get the best out of the funds that we do need to have consumer engagement and that doesn't come for free. I recognise at this webinar today a lot of people are giving up their time to be involved and have those discussions.
And if we're to get deep involvement from consumers going through the design of grant schemes, the potential evaluation of grant schemes and actually being, actually participants in those, that we need to recognise that the investment from people in doing that. I think Masha might be able to talk about some examples that we've had through MRFF processes though in getting deeper engagement with consumers and actually sort of allowing them to participate in the scheme. She might talk about some of the challenges and wins that we've had in funding, so I might throw to her, and Anne might also have some comments on that.
Thanks Phillip and I hope you don't mind if I jump in. I think it's such a complicated question because there's layers and layers of opportunities for involvement all the way from advisory and kind of input to how the priority setting and how funding is allocated through to the design of those funding opportunities, through to the design of the research that's been undertaken and its implementation and also through to the assessment processes. So, picking which of the grants are actually funded and able to proceed. And so, I mean, I can talk about it from the MRFF perspective and NHMRC also has a really amazing system and structure. So, we have a consultation to set our priorities for the MRFF that's done every couple of years. And it's a wide national conversation that does include consumer voices, as well as others. In terms of how we fund, I have a consumer reference panel that helps us in the ways that we commission funding, and they've been really instrumental in helping us design our assessment criteria.
So, that's really the crux of what success looks like. How do we value research and therefore fund research? And that consumer reference panel, as Elizabeth said, developed the principles for consumer involvement in MRFF-funded research. And we're looking to promote those and then embed those principles within the way that we fund routinely, where we commission research through the MRFF. We have, as part of that commissioning, which do require quite strong consumer involvement and that's embedded into all of our assessment criteria. So, the impact, part of the impact assessment is how will this improve outcomes for consumers, what's been the role of consumers in the design and implementation of your research? And then also, how a consumer, how does your research team, have they got demonstrated experience working with and contributing to outcomes for consumers? And then, in the MRFF, we have consumers participating in all of our grant assessment committees and they have a voice, an input, to how the selection process occurs.
We're trialling through one of our grant opportunities a voting for consumers to really bring that to the crux of the matter, the actual scoring of the applications. And that's a pilot that we're doing at the moment. And we'll look at how that's going and consider how we could roll that out more broadly. And I guess the important thing to say is in all of those roles where we're involving consumers in our advisory structures, in our consumer reference panel, and also in our assessment processes, they are funded roles. We remunerate consumers at the same rate as all of our other members of our advisory panels. We think that's really important recognition of the important contribution that they're making to the process. We've clarified through our grant opportunity guidelines that consumer, or remuneration for consumers, should be part of the direct research costs that are able to be requested through budgets that are put through to the MRFF for funding. So that gives a bit of a breadth of the sorts of things been trying to do.
I would just say that we always remind ourselves, in MRFF, that we're a learning organisation, we're always really keen to hear feedback and look at ways that we can continue improving what we're doing. And so, part of this consultation process is asking for great ideas that we can then look to implement moving forward. Anne, if I can perhaps hand over to you?
Yeah, thanks very much Masha and perhaps I can comment on both of the general questions, how consumers are involved in our processes currently at NHMRC, and then also the question of funding for infrastructure, for consumer involvement. So, on the first, particularly over the last few years, we've greatly increased the integration and embedding of consumer and community representatives in all of our advisory structures. So, for a long time, our council has had a consumer representative on it and that's, the council is the highest level of advisory body to the CEO and therefore onto the minister. But our other major committees also now all have a consumer representative on them, and that's a really powerful and important voice that's there for every single discussion about every policy that we take to these committees for advice. And then we have all of those consumer representatives and others form our Consumer and Community Advisory Group. So that's an opportunity for them, all to get together, and with additional people around the table representing lived experience and a number of different perspectives to talk about consumer involvement and how we can improve all of our policies and processes at NHMRC.
Now the great thing about that model is that each of the members of that group who are then on council or one of our committees can take that input that they've received from the wider consumer and community advisory groups into those committee meetings. So, we're finding, at least from our point of view, we're learning a huge amount from having that process in place. And so, it's been a good model for us. It's not to say that it isn't that it can't be improved, but I think it's been a really big step forward that we've made in the last few years. We are also, it depends a bit on our grant scheme, exactly the way in which consumer representatives are involved. But the most developed example is in our targeted calls for research, and these are schemes which are about a specific research issue or a specific health issue. And there, we ensure that we have a consumer advice in the scoping of the call and that helps us to formulate the call in an appropriate way. Then we have assessment of consumer involvement as part of the grant assessment process.
And what we've introduced most recently is to have consumer representatives as part of the assessment committee, and they not only comment, but they also score to contribute to the decision about whether a grant application will be funded. So, that's a relatively new initiative, but we're really pleased with how that has gone so far. And, of course, just as Masha said, we will continue to learn how to do this well and how we can extend that to other schemes. If I can just say a little bit about funding for infrastructure, for consumer involvement in research, just as Phillip said, this is a pretty complex and challenging issue. For us, we award grants to specific researchers and research programs. And so, it's, just as Masha said, for the MRFF, people can include the costs of involvement of consumers in their research design and conduct as part of the direct research costs for that grant application. So, we can support that directly through that grant for that project or program of research.
Now, that doesn't address the pre-existing infrastructure question, which we don't have a mechanism to support, but I think where we can influence that and encourage research institutions to be investing their infrastructure funding in that is through our policies where increasingly through toolkits and through a grant assessment criteria, we are encouraging or, if you like, incentivizing the research sector to engage fully to involve consumers at every stage of their research in design and conduct and implementation and communication. So, while we may not be able to fund the infrastructure that's needed in advance ourselves directly, I think the way we develop our funding policies and our specific grant assessment criteria can become quite a powerful force to incentivise institutions to invest that way. So, I hope that helps with at least a couple of the questions that have come up. Thank you.
Thanks to all of you, that was really helpful. And this is something I know that we all feel, organisations, we're included, like CHF, often our Commonwealth funding prohibits us from being engaged in research, yet every time there's a call, we will be deluged with often very last-minute requirements where researchers either want us to endorse their research, with limited visibility on our part, or provide an in-kind contribution so they can demonstrate they're engaging with consumers. And, of course, for many consumer organisations, we don't have the funding or the capacity to provide in-kind. And some cases, as I've said, we're actually forbidden from doing that. Anthony, in your day job role, for Health Consumers NSW, can you talk about maybe what some benefits or new ways of approaching this, just quickly, might be and what the limitations, perhaps, are, the current system for engagement? Thanks.
I mean, I think that point about we also are deluged. We know when funding rounds are coming to an end because we suddenly have all these new friends in the research community. I think while it's great that Masha and Anne have talked about what's happening to strengthen consumer involvement within the NHMRC and the MRFF, that's fantastic. But there are still limitations and structural barriers for more consumer engagement and just those things around partnership applications and partnership grants that expect that small consumer and community organisations have the capacity to offer what can be quite substantial in-kind support, actually means that there's a number of grants where we've had to say to people, "this is a fantastic program, we'd love to be involved, but we just can't commit to the kind of in-kind support that's being asked here." And I think at times that means that good research doesn't get over the line because they're unable to form those important consumer partnerships.
So, I think some of the structures and relooking at what partnership grants have to offer because even at the end of the day in the translational research field, there's an assumption that if something is commercialised, then the partners involved might benefit from that. But consumer organisations don't benefit from a new drug, they don't benefit from the commercialisation of a new drug, a new device, a new process. So, I think that needs to be looked at. I think organisations that have built their own... research organisations, that have built their own consumer engagement structures, we've worked very closely over the past few years with Sydney Health Partners, who's one of the New South Wales research translation centres. And one of the things that we've helped them do is build a consumer advisory committee, and that committee has developed a framework and guidelines for consumer involvement that helps that organisation, but also its members. And I think there's a link to that work in the chat.
So, but again, something what's needed, and this might be a discussion to have when we talk about, when we move on to that next stage of consultation around research strategy, is that there isn't anything at the national, on a national level... sorry, that looks at supporting consumer involvement. Sorry, I need a drink. Sorry about that. Elizabeth, go to the next person. Thanks.
Thanks and have that drink of water, Anthony. So, we might leave that topic, I think it's been well said. I often feel my nickname in the research community is Dr No, because I'm always saying, no, sorry, we can't help you. So, I want to move now on to governance structures and Shyam you're the fan favourite. I just need to tell you, there's a lot of fan support for you in the Slido. I'm going to come to you first and then to you, Anne, because one of the questions that's got a lot of interest is, "How will we know if whatever the new governance structures are, whatever comes out of this review, are any better than the ones we've got now?" So, what should be put in place to monitor and evaluate the effectiveness of these new governance structures from the perspective of consumers? So, I'd love to get your couple of minutes take on this, Shyam. And then Anne for you, I suppose, it'd be interesting to learn, because you've talked about all the things that you have in place at the NHMRC. My question would be slightly different for you than it is.
So how do you do that now? How do you know that those governance structures, I mean, you spoke a little bit about that, but you might have one or two more words to say about how do you know that they're doing the right thing and engaging consumers appropriately and that that's improving over time? So, first you Shyam, and then across to Anne. Thanks.
Thanks for the question and thanks, Elizabeth, as well. I think even with this process, I think the intent is clear from the department and the NHMRC to do a broader and deeper conversation and consultation and it's going to be a huge task as well in terms of developing a strategy. But what I said before, as well, the Department and the NHMRC is clear, they want to get the governance and administration right first before moving on to developing a national strategy, because at the current scenario and as people often said, we have all these policies and principles that are embedded in consumer. In my memory, the first statement came out in 2016 and then the researchers are aware of it, but where we are going wrong is the implementation part and the scarce resources that we get to do this right. I often say consumer engagement happens by choice rather than chance. We can't leave it for chance for a researcher to do it. They have to make a conscious choice of doing consumer engagement, and to do that, we have to enable them, not only as better researchers, but also better consumer engagement employers because one way to address is, at currently, as Anthony said, there are health and medical research institutes, and they reach organisations, like CHF and Health Consumers NSW and other independent bodies to do a consumer engagement work.
And you often have to say no because of the least amount of resource you have. So, what we want to see is putting where your heart, where you... when you talk about consumer engagement and that's from NHMRC and the department is why can't we have a competitive seed funding for Health and Medical Research Institute just to establish a consumer and community engagement workforce? Why can't we have a competitive seed funding because that will solve a lot of problems and that will help consumers to embed it in an organisation as leaders. Same power imbalance. We can sit on a consumer advisory board, but there is a power imbalance, and we need to mitigate that power imbalance. And the only way to do is providing more resources. Often consumer engagement currently is done by research office or a media and comms team, which is not only undervalues the consumers that are out of the research, but it is totally unethical, as well. So, when you want to do these things happen, we need to see money and we need to see the resolve of NHMRC and MRFF to make sure that the money, they give it to the researchers or spent on the consumer engagement.
There is no accountability for once they get a grant because, as Anne mentioned, there are metrics where, scoring metrics, if you want to get seven, you have to prove how your value, how you are including consumers, how you are valuing them, how diverse your panel is. But what happens once they get the grant? Who is accountable for it? And that's why you have to get the administration and governance structure first, and make sure the accountability is done from my ethics point of view, or a steering committee or from NHMRC point of view, and then the administration is done rather than developing a blueprint strategy that says we are going to involve consumers throughout the research cycle. I know it's a bit of a... I'm playing a bit of a negative aspect to it, but I'm just reflecting the true nature of consumer engagement because I'm being a part of this journey, not only as a health and medical researcher, but I'm being on the other side of the table as well. I'm being on the bedside.
I have been participated in clinical trials where I gave my blood and sweat literally without hearing back anything from a researcher, just feeding back the results of the trial, that needs to be changed. And the only way to change is making sure they are accountable. Thank you.
Thanks very much, Shyam. We've got a little time left. Just a couple more minutes. There are some comments that we won't get to today. And I just want to quickly mention, I'm sure the department will be looking through all of the questions. So, if there is a question that you wanted to ask or any comments you wanted to make, write it down because they can harvest all of these questions and look at them in their, at their leisure. So, I encourage you to do that. And there is a kind of a twin, I suppose to the question about consumer engagement and consumer capacity building, consumer infrastructure, which is the research bit, which is, "How are we providing researchers with the skills, the infrastructure expertise and the like, to engage effectively with consumers through all aspects of their research?" So, it's about learning how to work well together, not only one group or another group recognising, Thanks Alison, thanks for your comment in the chat, that there is often a power imbalance and we've talked enough about that in relation to finances.
There are other power imbalances too that can limit consumer engagement. So, we need to get that right. But that means bringing everyone together. So how do we make sure that we do that? There is a question, or it's really more of a comment in the chat, that's got quite a lot of support, which is the notion of patients being partners or health consumers being partners in the research process and others talking about having people help design from the beginning the questions that are asked and the research community, indeed the government, understanding what the key things are that Australians want to have researched. So, in our last couple of minutes, we might have one last go-to question and see how we go, which is this question about the role of consumers as leaders rather than as those people that research might be done to, ideally for and with. Anne, I do want to give you an opportunity just to answer that question about, "How do you know what you're doing now is successful. I'm sure you have some measures in place, so how do you know that the consumer engagement is making a difference? What kinds of measures do you use?" And then we'll probably be out of time, so I'll give you a minute to do that. Thanks.
Yeah, thank you very much. And this is actually a pretty tricky question because we don't have a formal evaluation process in place at the moment for improvements in consumer engagement. We're simply developing initiatives as we go, on the advice of the consumer representatives and as I said, embedding them in all of our major decision-making advisory processes. And so, I'm really interested in how we could measure that because, of course, for most of our new initiatives, we're getting better and better at developing an evaluation strategy. But if you have an evaluation strategy, you've got to have, really, things you can actually measure, track at starting point and see how they improve or don't improve over time. So, I'd be really interested in advice on how we can do that. From the point of view of consumer engagement, of course, we can count the number of different consumers that we engage with formally and informally through our advisory committees, through grant assessment and also through the many consultations we do for various aspects of our work.
So that's a measurable number. But is that really what you mean and is that the most useful thing for us to measure? And I think that it would be very helpful advice to us because, of course, with any changes that come as a result of this consultation, there will have to be an evaluation strategy of how those changes are working, whether they are achieving the goals. So, finding the right key performance indicators for consumer involvement in governance and administration of the MRFF and the MREA in any future model will be really important. So, I'd certainly appreciate that advice. Thank you.
Thanks and I'd like to thank on behalf of everyone here, all the panellists today, they’ve been thoughtful in their responses. They've been honest. They've been fearless at times in providing advice to government about the importance of consumers being part of this consultation now and into the future in the research community and its work, more broadly. Thank you to everyone who's given up their time. Just a quick reminder. Yes, this will go up on the Government's website. Yes, we'll make sure people know there's information in the chat about how to access various resources. People have put links in. Have a look at all of that. If you've got any last thoughts, if you want to thank the speakers, I certainly do, then feel free to do that. In other words, we look forward to all of you being engaged in the process, as it goes forward. And we thank the department for hosting this and doing all of the technical and other things to make it happen. It's really great. Thank you to you all and good day.
The Consultation webinar: Improving the alignment and coordination between the MRFF and the MREA webinar was part of a national consultation. The focus was on improving consumer involvement in health and medical research.
The webinar was hosted by:
- Dr Elizabeth Deveny, Chief Executive Officer (CEO), Consumers Health Forum of Australia
- Dr Anthony Brown, Executive Director, Health Consumers NSW
- Dr Shyamsundar Muthuramalingam, Consumer and Community Engagement Practitioner
- Professor Anne Kelso AO, CEO, National Health and Medical Research Council
- Dr Phillip Gould, First Assistant Secretary, Health Economics and Research Division
- Dr Masha Somi, CEO, Health and Medical Research Office.
- background and context
- purpose of the reform and consultation
- potential models
- what we have heard so far
- next steps.
A questions and answers session followed.
Read the webinar presentation.