Medical Research Future Fund consumer webinar on the Post-Acute Sequelae of COVID-19 Research Plan – 6 September 2023

In this video we talk about the Medical Research Future Fund (MRFF) Post-Acute Sequelae of COVID-19 (PASC) Research Plan and what it means for consumers. PASC is also known as long COVID.


Elizabeth Deveny:

Welcome everyone to our webinar today. We’re delighted to have you all with us. And we’ll be starting in just a moment. Please note that we will be recording this webinar because there are people who have registered but told us they’re not able to make it at this timeslot so the recording will go up on the Department’s website and we’ll promote it when that’s ready. So yes we are recording for those that might be interested to know that. We’ll also be using Slido which is integrated into Webex nowadays. Some of you might be familiar with Slido. And you may already be able to see that on your screen. Look. We’ve got a question which is will this be recorded? And the answer to you anonymous is yes it will be recorded. You can type during the session any questions that you have about what’s being said. And we’ve got a practice question for you here as you join. So the first question just so you can get the hang of it is:

Q:        The weather where I am is great.

So you can click on the like button if that’s true for you and just have a practice at using Slido within Webex. So encourage all to logon. Look. Six people are having good weather. That’s fantastic. How many more people are having good weather where they are today?

We have the structure which I’ll talk about more broadly in a moment. Just let a couple more people join because it does take a second for everybody to logon. We’ll allow you an opportunity to hear from people with expertise in these areas but also an opportunity for lots of questions. So if you already have some questions feel free to put them into Slido right now. If you don’t during the session you can add them in. We’ve got ten people with good weather which is slightly concerning that many of you are not today having good weather. I’m not sure where you all are. Twelve people with good weather. Fantastic. Maybe we only have 13 people online at the moment. That’s possible. We’re expecting 100 or perhaps a few more. But it does take a little while. I know sometimes I suddenly realise I should be somewhere and I’m not there. So we’re two minutes in so I think we’ll make a formal beginning now and get this show on the road.

So as we start more formally I would like to acknowledge the traditional owners of the lands on which we’re meeting. I have the privilege to be on Ngunnawal and Ngambri country today and I would like to show my respect to Elders both past and present and also acknowledge any new leaders emerging in these communities. I would also like to acknowledge the continuing relationship of Aboriginal and Torres Strait Islander people with country all around Australia, country that was never ceded, and I’d like to make a special warm welcome to any Aboriginal and Torres Strait Islander people who are joining us today and share my deep regard for you all. Thank you so much for joining and being part of this today.

While we’re acknowledging people I’d also like to acknowledge people who have lived experience of long COVID or PASC as we call it today in this webinar, those people who have perhaps experienced long COVID or are still experiencing long COVID, those people who have family members who’ve cared for people, worked with people who have experienced this. We know that this has been for many people a very fraught time. Whenever you have a medical experience where medicine has to catch up with your lived experience it’s tricky. So I would like to start by just acknowledging everyone who’s on the call today who may indeed have that lived experience. And we’re hoping that this research which is of course not a magic fix, it’s a five year program, will over time with your input as consumers no doubt into various aspects of that make a difference for people who in the future might have this experience or perhaps share another experience where they can learn from what we learn through improving our response to PASC.

So the format of today. In a moment I’m going to spend just a few minutes talking to you about my experience of being on the expert advisory group for the Research Plan and how that went and what it meant for me, and then we’re privileged to have a consumer Alicia who’ll be speaking to us about her experience of long COVID and what she’s hoping that this research might mean for her and for other people into the future. And from there we’ll pass across to the amazing Dr Masha Somi who will be talking to us about what the Government’s research agenda is in this and also we’re taking this opportunity to really give you a deep dive into how consumers are already engaged standardly and consistently in the work that’s done across her office and her team. So I’m really looking forward to hearing that and also sharing that with all of you.

At the end of that we hope that we’ll have too many questions to answer in Slido. So again I’m encouraging you to pop those in as you think of them and then I’ll do my best, I’ll bring those together theming them, asking questions of the various panellists until we finish off. And then at the end as I said we are recording today so then we’ll be able to pop this recording up on the website and share it for all of you so that for those people you know who couldn’t get there today or if you enjoyed it so much that you want to binge it all weekend and watch it back to back for five or ten hours you will be able to do that too one day. How lucky are you.

So now we’ve got about 24 people who’ve had a go at Slido. That’s fantastic. If you haven’t done that yet we’ve got a practice question which says the weather where I am is great, and what we’re encouraging you to do is just to click on the like button so you can check that you know how it works and you’re comfortable to be able to ask questions. Thank you for the person who’s said sunny. And someone’s already got a question. That’s fantastic. We’ll hold that over ‘til the end but keep them coming. Any more questions you’ve got add them all in.

So now I’m going to start by giving you just a little bit of I suppose a reflection on my experience of being on the Research Plan Expert Advisory Panel. So this is the post-acute sequalae of COVID¬ 19 Research Plan Expert Advisory Panel experience and my first comment is Masha I’d love it if they could be shorter if you ever ask me back. Because that was such a mouthful and even the Outlook invitations wrapped around and wrapped around and wrapped around because the name was so long. So I’m in favour of shorter names for advisory panels.

So the purpose of this was to bring together a really broad group of people to look at developing a broad funding framework for the $50 million that Minister Butler announced as being available for research into this area. So there were people with a wide range of backgrounds both personal and professional who came together to do this. I was there representing consumers but I was not the only person that brought a consumer perspective. There were people representing various communities, there were clinicians as well as researchers, there were people with a strong background in education and consumer and community engagement in their work. So we all came together in what was a very challenging piece of work. These committee meetings are long and they’re complex and the papers are also very long. And so over a period of weeks we had to free up time in our lives to read papers, comment, come to meetings, prepare to talk about things. It was a very intense period of work it is fair to say and also very interesting and valuable. That’s certainly how I found it. We had a really rapid process of onboarding and a big thank you to everyone in the Health and Research team who were really great at helping us do all of that.

And it was a challenging process because everybody came with their own views and their own experiences as is the case when you bring any group of people together, and we had to quickly kind of congeal and cohere in understanding what it was we’re meant to do and forming a shared understanding of what it was we needed to do in the meetings. I think it’s fair to say that everyone was acutely aware that while this was an exercise in research and research planning it was not an academic exercise. At every meeting multiple times people talked about the needs and recognised the current situations for many people who are having an experience of PASC or long COVID and who are not getting perhaps the care that they would like.

Unfortunately research is a slow and mysterious creature and not likely to find an answer for you within the next day or the next few weeks. So I’d encourage any of you who have healthcare needs to go to whoever it is you normally go to for your healthcare, your nurse practitioner, your Aboriginal Controlled Health Service, your GP, whoever it is, and go and hopefully find some better solutions for whatever you’re experiencing right now.

Many people in the meeting spoke about their experience of PASC sometimes from professional perspectives, sometimes from personal perspectives also. They may have known people, may have experienced long COVID themselves. And we were really aware of this tension between people’s need for high quality care right now and better support for clinicians who are supporting or working with people who are experiencing PASC right now and the need for rigorous, deep research into this area, into this really new health area, building on what we know from other similar experiences, other similar fields of research and doing that in such a way that we could as quickly and reliably as possible start providing those research insights through to the education communities, through to the clinical communities, the research communities and to Australians wide and large everywhere.

So how do you do that? How do you take a novel area of research and build a funding structure which allows those research insights to flow quickly through to the right places but also make sure that actually they are insights and not accidents or coincidences. You certainly don’t want people to start down a path and find out that actually what’s been recommended is not as rigorous as you might have first thought. So I think that did give us a lot of opportunity to kind of think through words very carefully, to be very clear on what it is that we were trying to achieve and do our best. I expect it’s not perfect because none of us advocated perfection. What we advocated was the best we could do given what we were requested to do by the Minister, the timeframes we had, the amount of money that we had, the guidelines that are used in these circumstances. I think at the end we were satisfied that we had given our best efforts all of us and now the next stages of the process need to play out. And I’m sure Masha will talk more about that in just a little while.

So the next thing I’d like to do is I’d like to pass to Alicia our consumer here who’s going to give you some of her thoughts and we’re really looking forward to hearing from her. So thank you so much for your time Alicia.

Alicia Newnham:

Thank you very much for having me. I always take any opportunity I can to speak about this because that’s what we need to do in the early stages. We’re still coming across so many people who haven’t even heard of the term long COVID. So I guess I’ll tell you a little bit about my story as I’ve been asked. If I forget anything or repeat myself I am sorry. I do have severe brain fog most of the time as one of my symptoms so forgive me in advance.

I am coming to you live from my bed where I’ve spent the best part of the last 15 months. I got COVID in May last year and I have never recovered. I have a very supportive husband who is now my full time carer and we have three children to which I am mostly unable to perform the usual mum tasks for which is very upsetting.

I have had and continue to have many symptoms, well over 100. Apparently there are over 200 symptoms. I’m sure if I did write them all down and count them that’s probably where I’d end up it feels like. This has been completely life changing for our whole family. And as I said I spend majority of my time in bed. I’m unable to perform normal tasks for myself. I was previously a very active working mum. Three growing boys so life was crazy. And it is now significantly different and I would give anything to have our old life back, the one I used to take for granted.

I was recently reinfected with COVID-19 in May this year. There’s something about May. So basically one year and one day after I first tested positive and unfortunately it worsened a lot of my symptoms and brought on a lot more that I had never experienced before. So in May last year when I realised that I wasn’t recovering after my seven day required isolation period I went back to work and went back to doing all the mum things, life things. My husband tested positive on my day six. So I didn’t have a choice. Even though I still felt extremely fatigued I went back to doing all of the things. I’m a person that just usually pushes through if I can and there was no way that I could push through this time.

I spent a week really trying to just get through it. So two weeks after testing positive I attempted to get out of bed in the morning to get ready for work and get the kids ready for school and my body said no way. And I physically couldn’t get up and I wondered what on earth was wrong with me. So I went to my GP. And I am one of the lucky ones who had a GP who knew about long COVID and straight away even though it had only been two weeks he said ‘I think you have long COVID. Get some rest, plenty of rest. You’ll be right in a few weeks’.

None the wiser I went off and did as he said and then when all different symptoms started popping up I just knew something wasn’t right. After a few months of seeing the same GP who continued to tell me the same things – which I don’t blame him for. There is obviously a lack of research surrounding this – I had to start taking it upon myself with my husband’s help to start advocating for myself. And tried a few different GPs before I found one that was shocked to learn that I hadn’t had any tests done, that I’d just been told to rest. So she began a series of referrals for me which I believe would have happened had I been able to get into a long COVID clinic. I was on a waiting list for a very, very long time and never heard anything so had to continue advocating for myself. And I had test after test after test because obviously we didn’t know what to look for or what to do but at least my GP was taking some kind of action.

For my heart palpitations I was referred to a cardiologist. I’ve seen a neurologist, a psychologist, a lot of the ‘ologists’, the names for which escape me right now. But all of my test results came back normal and it was incredibly frustrating because I knew that that wasn’t normal. So we kept going. Took three different cardiologists to diagnose me with POTS, which is postural orthostatic tachycardic syndrome. I’m on two types of heart medication now as well as many, many other medications that we’re just trying, supplements from a naturopath. It’s all trial and error and everybody’s different.

Yeah. It’s been a very crazy, very difficult ride. Mental health definitely comes into it in a big way. So having access to the resources that we need, we at the moment are thousands of dollars out of pocket and we’re also down to single income. I haven’t been able to work this whole time. I stopped myself from driving because I knew that I just couldn’t trust the way my brain was working and I knew that I would make a silly mistake that could be devastating for many people. I have a disabled parking permit for when I go out. My husband drives me to my appointments. I use a wheelchair or a walker and on really good days a walking stick. But I can’t stay upright for very long and I certainly can’t walk very far even with the mobility aids. So yeah it’s been a lot. And as I said I knew I’d forget something. I was going to say something about that.

I’m really, really hoping that this is the start of something great for those suffering and for those who’ve been suffering for many, many years with ME/CFS, fibromyalgia and all those types of things that I’ve now been diagnosed with also. Hopefully this can bring some light to those people too because we really need research, we really need help, assistance, financial assistance. Our carers need support. This is going to affect millions of people on top of those who are already suffering. So thank you for this opportunity to tell my story and more than happy to answer any questions.

Elizabeth Deveny:

Thank you Alicia. Thank you so much for your courage and your honesty in sharing what’s been a very difficult year or so for you. I’m sure that everyone here has been touched by what you’ve said. And all of us here do want to find a better way forward for everyone. And as you’ve said the experience that people are having with PASC or long COVID is one that people with other undiagnosed conditions have had in the past. So really what can we learn from what we already know and how can we use the opportunity of research to do a better job.

If you’ve got questions you’d like to ask Alicia then pop them into the Slido and after Masha’s done her presentation we will come back to those and we’ll also give you a little chance to have a breather between now and then too. You can look at the questions yourself too Alicia in the Slido so you know what people are asking. Thanks to everyone who’s put questions in already. We’ve got a dozen or so questions. If you haven’t done so yet have a look at the list. The way that this works is if you vote for a question the most popular ones are the ones that we’ll answer first. And if we run out of time and the question has no votes it might not get covered off in our question and answer session. So really encouraging you if you’ve got questions now or after Dr Somi gives her presentation put them into the chat and if you haven’t got a question have a look at the list as we go through the rest of the session and vote for those ones that you think are the ones you really would like an answer for today. That really helps me at the end to know where to start, which ones people most want to hear about and which ones they’re not so fussed about.

Okay. So now we’re going to move over to the next section which is to hear from Dr Masha Somi who’s going to talk to us about the research process. Dr Somi is the Chief Executive of the Health and Research Office of the Department of Health and Aged Care. So we’re delighted to have her with us also and co-hosting with us for her expertise and her deep compassion and understanding in this area. So thanks and I’ll hand over to you.

Dr Masha Somi:

Thank you Elizabeth and it’s really great to have the opportunity to present today about this Research Plan which is incredibly important. I just would like to begin Alicia by acknowledging your story. It’s incredibly moving. I can see the impact it’s had on you and your aspirations and your family and your community so I really want to acknowledge that. And also to say that’s why we’re here. We’re here because we want to see better outcomes and we know that there’s an issue that needs to be addressed and research is one part of that process.

I’d also like to acknowledge the traditional custodians of the lands that we’re meeting on. Just building on Elizabeth’s acknowledgment. I’m joining from Ngunnawal and Ngambri country here in the Canberra region.

So I’ll give as Elizabeth mentioned an overview of our research process with a focus on how we involve consumers in all of our work and then I’ll talk through the Research Plan in a little bit more detail. So to do that I’ll shift to a presentation. So we’ll just share that.

Thank you. We’ve just got a team here. I’m getting the slide deck working.

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Medical Research’, ‘Future Fund’, ‘Consumer webinar on the post-acute sequelae of COVID-19 PASC (Long Covid) Research Plan’]

Okay. Thank you.

So just to give a little bit of context. In the MRFF we fund a wide variety of research. We have some themes that we focus on, patients, researchers. We have some missions that address specific priority areas like our First Nations health and we also have a keen interest in research translation. So that’s looking at making sure that the great ideas and the great innovations that we have in research are translated into practice. And the work that we’ve done on PASC or long COVID is one of those where there’s a little bit from all of those elements but a really strong focus on research translation and care and the models of care that people are able to access.

We do fund right from basic pre-clinical research, we do clinical trial work and public health research and we also do implementation research which is about as I mentioned delivering actual research into practice to make sure that it’s the best that it possibly can be. We provide about $650 million a year in research investment and this is translating into a $6.3 billion ten year research plan that we have.

I’ll just highlight there are two big health and medical research funders in Australia. There is the Medical Research Future Fund but we also have a fund called the Medical Research Endowment Account which is managed by an organisation called the National Health and Medical Research Council. And many people are probably a bit more familiar of the National Health and Medical Research Council and the way that it operates. So it disburses around $900 million a year. It supports what we call investigator initiated grants in all fields of health and medical research. And investigator led means that the researchers come up with good ideas and then they pitch the funding through competitions and then the projects that are assessed to be of the highest scores, the highest quality, that’s what’s funded. And any idea can be put forward. There’s no limitations on the nature of the projects that are funded and the topics that are covered through there. So the National Health and Medical Research Council is an independent agency within the Health and Aged Care portfolio.

So here in my office, the Health and Medical Research Office, we manage the Medical Research Future Fund. So it’s a slightly unusual funding mechanism for health and medical research in that we have an endowment account that’s managed by the Future Fund Board of Governors and they invest the funds according to a mandate, an investment mandate that’s set by the Treasurer and the Minister for Finance. And the earnings from those investments are then put into health and medical research. So that’s about $650 million each year now we put through health and medical research. The difference between our fund and the medical research endowment account is that we focus on priority areas. So we call ourselves a priority driven research fund. That means we’re focused on health topics or healthcare issues or particular populations that probably are experiencing worse outcomes than others. And our focus is to try to equalise those outcomes, make sure that we’re implementing and translating all the research evidence that we have into practice and also working with consumers and others in how we do that, how we set our priorities.

So we sit within the Department of Health and Aged Care ourselves. So they are separately managed funds. So that focus on priority areas, priority topics and priority populations is what has allowed us to be quite proactive in how we’ve responded both to COVID-19 as an initial pandemic but also to the sequalae which is the long COVID as well and I’ll talk about that investment in a little bit.

So more broadly within the MRFF we have a real interest in consumers. So consumers are the users of research. For us we see them as the people that actually have to engage with whatever comes out of research and how it’s implemented into healthcare and also we see that consumers are the funders of research. So all of our research, so the Health and Medical Research Future Fund and other Government mechanisms, that comes from our taxes. And so we see an absolutely central role for consumers to play in how we prioritise and then design and implement the research.

We have done quite a little bit of work from our inception in 2015 to about 2021 to really try to put consumers at the centre of the research process however at about that time we felt that it was important to really push ourselves and push the agenda in the MRFF about centralising consumers in our processes. So to do that we established a consumer reference panel. They were appointed in April 2022 and their role is to give me as the CEO of the Health and Medical Research Office advice on strategies for strengthening consumer involvement in the implementation of the Medical Research Future Fund. So you can see that’s quite broad. We didn’t ask specific questions. We just wanted general advice around how we could do our work better in funding health and medical research.

In asking them to join as a first step we asked if they could develop for us some principles for how research projects funded through the MRFF should involve consumers. We didn’t have a framework for explaining to researchers what our expectations were. We didn’t have a strategy or a mechanism to give applicants to write against to say this is what good practice looks like. And that also meant we didn’t have a series of principles or a document that we could then give to our grant assessment committees to say this is what good consumer involvement all through the research process looks like. So we wanted a document that we could publicise and promote and also then use through all of our granting processes to set those expectations.

So the consumer principles are done and I’ll talk about those in a minute. But now the consumer reference panel has been working on some other projects with us which has been really valuable and instrumental and I’ll share some information about those as well.

So first about the principles. So whilst there were a lot of definitions about what a consumer was there didn’t seem to be an agreed definition. We looked at a number of others that are in place in Australia and internationally and following on from that our panel felt that they wanted to have a definition within the Medical Research Future Fund and that’s the definition that they have set for us. A really important add on or inclusion compared with some of the others that we’ve seen is the concept of family and community. So we have some Aboriginal and Torres Strait Islander representatives on our consumer reference panel and they really wanted us to incorporate the concept that consumers are not just the person and their carer. It actually spreads out to be their family and community members who are impacted by health but also impacted by the care that’s available to the person who might be unwell.

So there’s just a link to the consumer reference principles and you can also scan the barcode there to actually get access to the principles themselves.

So why did we want the principles? So overall inclusion by including and strengthening consumer voices we’re expecting that we’ll improve the quality, relevance and impact of MRFF funded research. That’s because we expect the research will include a greater variety of voices in the process, that it will have safe strategies and effective strategies for including consumers in research. We’ve heard that some consumers maybe don’t have the best experiences and so we really wanted to address that – participating in research so we really wanted to address that. The research will include the perspectives and lived experience of patients and clients and service users and carers. And that’s absolutely critical if we want the research to be acceptable by consumers at the end of the day.

There’s a really great focus within our consumer reference panel around the diversity of our population. I think sometimes research has focused on particular cohorts or particular groups and our consumer reference panel has been really encouraging us to think beyond those groups and think about the diverse experiences of different populations or different groups within our broader population.

And finally the consumer principles include some really clear guidance for what good consumer involvement looks like in all stages of research. So it’s really a cheat sheet that researchers and consumers can use to see how they can improve consumer involvement in research projects.

So here are the principles themselves. So these principles say that the consumers really want to be involved in all types of research and in all stages of research and that they also want to be considered as partners to researchers not as subjects. So that’s a really important element for us. They want to be involved effectively, sensitively and safely. And as I mentioned earlier that focus on diversity and equity. We want to include all parts of our population in our research endeavour.

We actually held a webinar on our consumer principles. John Stubbs who’s the Chair of the consumer reference panel and I hosted a group of presenters. We had consumers. We also had some really good practice examples. So we had some researchers who were doing really great consumer involvement and they gave some really practical tips and examples of how they’ve been able to work effectively with consumers. And we also had another member of our consumer reference panel talk about her experiences participating as a consumer representative in a wide variety of research particularly in basic research, that sort of lab early stage research where people are locked and say we’re not sure we need a consumer. So she was able to talk in quite a bit of detail about her work that she’s been able to do and the contributions she’s made and why it is important to have consumers involved in all stages of research. So we held that webinar on the 3rd of August and it is publicly available on our website and we encourage you if you have an opportunity to have a look at it.

So after developing the principles the consumer reference panel kept working with us. They did a review or a light touch review of our assessment criteria descriptions and I’ll talk about that in a minute. They helped us to design our 2023 consumer led research grant opportunity. So it’s a $10 million allocation of funding. And we worked with them to change not only what was asked for but really focus on the assessment process. And an outcome of that was having a separate statement where researchers have to explain in two pages how consumers are involved in the research that’s being proposed.

So what we were hearing from our grant assessment committees is that sometimes you can hide the fact that maybe you’re not doing a lot of consumer involvement if it’s mixed in with the methodology. So actually providing two pages means that it can be quite clear if someone’s got good comprehensive consumer involvement versus just a little bit. Involving someone maybe in a committee or getting them involved in bits and pieces rather than being integrated throughout the research process. So we’re trialling that as an approach. And we’re also for the first time having a number of consumers on the grant assessment committee as full scoring panel members. And that is a shift that we’ve taken and we’re trialling that and we’ll see how that process goes. We’ll do some surveys of all of the panel members to ask about their experience and then consider what we might do with that advice going forward.

The consumer reference panel is also working with us in our work on a statement on sex, gender and variations in sex characteristics and sexual orientation in health and medical research. So really thinking about how these topics are considered in the design and implementation and dissemination of research and its outcomes. They’re working with us still on reviewing our Grant Opportunity Guidelines. So that’s all the rules around what we fund and how we fund, the types of costs that are included and our assessment processes. They’re working with us on research topics and prioritisation and working with them around are there gaps, are there things that consumers are really interested in that aren’t normally funded through other mechanisms and should we be focusing on those through this consumer led research grant opportunity.

And we’re working with them around further implementation of the principles. We don’t want to just have a document. We want to make sure that the principles and the advice that are in there are infused in all of our granting processes, they’re infused in all of our application and assessment processes and in all of the engagement that we do with researchers.

So then looking at our assessment criteria. We have four assessment criteria. These are three of them. The final one’s called overall value and risk and it’s an overall consideration. So we did this update with the consumer reference panel last year. The text in yellow highlight are the sort of key elements, the key inputs that we had with our consumer reference panel to really embed within our assessment criteria the involvement of consumers in the research project. So in the impact criteria we’re asking for a demonstration of how the views and values of consumers, the community, health providers and others have informed the proposed research including how the needs and priorities of consumers have informed the research questions. So that’s getting to are you actually addressing an issue that’s important to consumers and health providers and others who will actually be using the research.

In terms of methodology I’ve just highlighted that the diversity of research participants has been brought up and made more prominent. And also the question of how consumers are involved in the proposed research particularly their contribution throughout the life of the project. So this is really trying to push and encourage researchers to involve consumers throughout the whole research process not just at bits and pieces that they think are relevant or important. And in terms of capacity, capability and resources really asking that the research team has a broad experience and can bring a broad set of perspectives so that they’re working across disciplines, genders, cultures and lived experience relevant to the research questions. So we want to know that the people who are working on the topics actually have experience on those particular topics and also that they have the skills and the experiences to actively involve consumers and that it’s done appropriately and effectively. So really looking at the competence of the research team in how they bring consumers into the research process safely and effectively.

So I’ll now talk about the PASC Research Plan. So maybe just to ask why PASC and not long COVID. It is a sort of a language that’s used within the Department of Health. It’s for us a post acute sequalae of COVID-19. And that’s really tried to capture that there’s a broad range of sort of follow on sequalae that come from experiencing COVID-19. I understand there’s ongoing debates about definitions of long COVID, whether it’s 12 months or several months and the types of things that are included and so we felt that post-acute sequalae of COVID-19 is a broader term. So that’s the language that’s used within the Department.

Many of you will know the context, that the House of Representatives held a Standing Committee Inquiry into long COVID and repeated COVID infections. From that there was a series of recommendations one of which was around a research program, a structured research program around long COVID that includes representation of priority populations, has long term funding and that expands the breadth of the research endeavour. So basic science, clinical trials, models of care, health promotion and implementation science. And I’m hoping that you’ll see once we talk in a little bit more detail about the research plan itself that those topics are covered in the research plan, that we do have a long term investment of $50 million over a number of years and that priority populations are embedded through the research plan as well.

And just importantly through the House of Reps report the importance of codesign with consumers was emphasised and has been picked up in the research plan. So the Minister for Health and Aged Care has tasked the Department with developing a national plan for responding to long COVID, taking into account these committee recommendations. There is a national plan that is being developed within the Department of Health that will articulate the Government’s response to the inquiry and this research plan is just one part of that response. So this is one part of the research element. We’re anticipating there will be other potential research components but also there will be other components that will focus on care, data and some other elements that are required and that were actually recommended by the House of Reps inquiry.

So the Minister announced that there would be a $50 million investment from the MRFF with a focus on improving outcomes for people experiencing PASC or long COVID. The main thing was the Minister had an intent and a policy objective and he had a priority that was set from Government. What he did was to establish a group of experts to come together to design an investment plan. So the panel included the expertise that’s listed on there and Elizabeth spoke about the diversity of views and experiences on that group and talked a lot about how the group worked and how they went through the prioritisation process. And just to reflect on Elizabeth’s sort of comments and points is it was a really good group that was able to come together, recognising the level of funding, recognising the priorities set by the Minister, to come together to develop the best possible plan that they could with the funding that was available.

So the Minister did set some priorities. His objectives were that he wanted the research that was funded to generate evidence on the current and future impacts of PASC in Australia. He wanted some design and evaluation of clinical pathways and models of care that address inequities in access and outcomes and also to find new therapeutic approaches for the prevention and/or treatment of individuals living with PASC. So we’re going to have two grant opportunities. There was a question about the staging of these that’s already come up. So we’re going to have two grant opportunities. One that’s open now that will have research commencing from about we’re hoping April next year and one that will open next year that will allow research to commence the following year. And most of our research outcomes are expected in a number of years. As Elizbeth mentioned the research endeavour takes a bit of time and so it won’t be that we’ll be having answers immediately. The research projects will start to produce outcomes in several years depending on the nature of research that’s being undertaken.

So these are the main aims that have been identified in the research plan. If you have a look at the aims on the left there we tried to present these in a way that was understandable to consumers about what would be different. So how will this research investment assist consumers in the long term. The first aim was about improving our understanding of PASC but for the purpose of improving consumer, community and health system outcomes. The second aim is around improving care for PASC by building knowledge on the mechanisms and pathways that lead to PASC. So that’s sort of the scientific way – I’ve got scientists in the team. I’m not a scientist myself. That’s basically for us a way of understanding what are the pathways of disease. Once you’ve got an infection what are the biological and other mechanisms that happen in your body that lead to disease, lead to long COVID in particular.

The third aim was about identifying the best therapies for improving outcomes for people with PASC. That’s really looking at treatments and therapies that will be available. And the fourth aim is around how do we make sure the health system actually works to improve care for people living with PASC.

So I’ll talk in a bit more detail about each of these aims and the projects that will be funded through them but also just wanted to flag we’ve got a couple of quotes from the panel members. And you can see kind of the things that they were focused on when they were having the conversations in setting the research priorities. They had people with long COVID at the heart of the plan and we just wanted better outcomes as fast as possible.

So aim one which is about understanding PASC so that we can actually improve outcomes and there are two research projects that will be funded through this aim both with up to $5 million made available. So the first project is about seeking to understand consumer experiences of PASC and looking at the impacts on physical, mental, social and emotional health. So it’s really trying to look at the person as a whole and understanding the impacts that PASC has on that person. So it has to involve partnerships with consumers and primary care researchers and also we want to make sure that it includes consumers from priority populations and across the age spectrum. So we don’t want to just focus on one part of the population. We want to make sure that the research project is looking at the different experiences that can occur amongst different groups within the population.

The second project will support the use of data and informatic approaches to generate knowledge on population wide impacts of PASC. And really that’s sort of saying what’s happening to the community and what’s happening to society from PASC. So the first project’s looking at individuals and their immediate networks and the second project’s saying what’s happening at a community or at a system wide level from PASC so we have a good sense of how it as a burden on our society has relative to other conditions. And obviously that’s not knowledge that we’ve had before and so we have to build it.

The second aim was around building knowledge of the mechanisms and pathways. So there’s $7 million allocated to this aim and it will fund a series of projects that look at molecular mechanisms, pathways, biomarkers as well as the psychosocial, physical, behavioural and other contributors that may help us address PASC. So it’s really that foundational knowledge that we’ll need to generate new treatments and new diagnostics and new therapies for people living with PASC over time.

So the third aim is about identifying the best therapies for improving outcomes. So we’re trying something different in the Medical Research Future Fund. Usually we’d run a competitive process and fund a series of different clinical trials and they probably would have done slightly different things in looking at similar questions. What we’re trialling is actually establishing a single clinical trial that would be national in scope and it’s what would be called an adaptive platform clinical trial. What that means is you have a single clinical trial platform and infrastructure and then patients are recruited into that single trial but they can be put onto lots of different therapies or treatments.

We’ve talked about pharmacological and non-pharmacological interventions and that can change over time. It’s not fixed on testing one or two or three interventions. Adaptive national platform trials allow you to cycle in and try new things as the evidence emerges. So there might be new treatments and new interventions that will come in over the next few years because it’s such an emerging field and having this adaptive platform will allow the researchers to actually move through those new interventions much more quickly and actually find out if things work or don’t work much more quickly than we can find out through a normal clinical trial approach. And just some of you may know these sort of adaptive platform trials were used in the United Kingdom very early in COVID to really cycle through and test things like Dexamethasone and Hydroxychloroquine and others to really test whether things worked in a really quick way but move onto new ones as well.

The other really important thing about this trial platform is that it’s a requirement to include primary care settings. So we didn’t want this to just be – we thought there might be a potential that it might just end up in one setting like a hospital or an acute care setting and we really wanted to make sure that primary care was embedded in that platform trial. There’s a requirement for rural settings as well. So this won’t just be conducted in urban environments. And we’re using a two stage funding mechanism where we’ll fund a few to begin with and then they’ll compete to actually do the implementation. Because adaptive platform trials are very complicated and difficult to set up and there’s often been failures in groups trying to set them up. What we’re saying is we’ll start a number of groups up and see which one actually works the best before we give them the full implementation funding because there will be $8 million allocated to that national platform trial. So it’s a big part of the investment and we want to make sure that it works as well as it possibly can.

So finally and probably our most significant investment with $24 million is research on models of care, models of care that will improve outcomes for people living with PASC. So a key element of this is co-leadership with consumers and that’s been really embedded within the description of the grants and also into the assessment process. And also we’ve made requirements that the models have to be consumer centred and multidisciplinary, scalable and cost effective. So with all of these requirements being put in, and then some of these grants are actually focused on priority populations and also in rural, regional and remote settings, this is the reason the grant opportunity will open a little bit later.

So I talked earlier about us having two stages, two grant opportunities. The first one focuses on all those other aims and we felt that research teams would be well placed to put together proposals to make applications to those grant opportunities. And so that’s open today and the funding and the research will start running from April next year. We felt and on the advice of the expert advisory panel that to actually do these models of care well takes a lot of preparation time, that the research teams – and that would include the academics, the health services, the consumers – would need time to get together and actually put together really good proposals. And that’s the reason this stream of funding will be advertised. So applications will be sought in 2024 and then the research itself will commence the year after. And so it’s a one year delay however we had a lot of discussions with the expert panel because we didn’t want people to just rush in with projects. We actually wanted them to take the time, work with consumers, work with health services and come up with really good projects that would actually achieve outcomes and be sustainable in the long term.

So our grant assessment process is quite complicated. This is sort of a bit of a process map across the bottom. You can see that it outlines what’s happening with the very first grant opportunity, that it’s open today. It closes in November. We’ll be having the assessment undertaken in quarter one next year with the outcomes we’re expecting to be announced from April next year. So we have a Grant Hub. The National Health and Medical Research Council actually operates as a Grant Hub for us in this instance. They established the committee and I’ll talk about committees in a minute. They manage conflicts of interest. The Grants Hub and our leadership group within the Health and Medical Research Office actually brief the committee, the grant assessment committee before they start scoring. And one of the things they do is talk through – in this instance it will be to talk through the research plan. What are the key elements of the research plan, what was the expert advisory panel trying to achieve, requiring the grant assessment committee members to really focus on what was trying to be delivered through the research plan so that they can implement the thoughts and the wishes of the expert advisory panel.

There’s some other details in there but I don’t think I need to go through except just to comment that there is a consumer member on all MRFF grant assessment committees and they speak to all of the applications. And so they’ll give a comment before the scoring is finalised. And I have heard that the consumers’ advice can quite significantly change a score. So they really focus on how effective and meaningful the consumer involvement and the consumer engagement has been in the plan so that it’s really clear to the members as they’re looking to score.

So this is a bit of a slide just on the overall grant assessment committee for the Medical Research Future Fund. We work really hard to bring different voices into those processes. We have what’s called a grant assessment and that means that we’re bringing a range of expert views into that assessment process. It’s not peers. It’s not just other academics. We have health service providers. We have industry representatives wherever it’s relevant. We always have consumers involved and we have clinicians as well. And so it’s a much broader assessment of applications compared with usual research funding.

We also have a really good mix. So gender balance is good. Not great but 54% of our grant assessment committee members are women and 46% men. And we have really good sort of representation across the states and territories. We try to always have someone from overseas, an international member on our grant assessment committees and that’s really just to speak to the international competitiveness of the projects and how they might align or not align with other things that are happening internationally.

I just wanted to acknowledge that we did receive some questions ahead of the webinar today. I’m hoping that some in that top group there will have been answered with the presentation that we’ve given today and really happy to take any more questions through the Q&A session. There was a group of questions that talked a little bit more about the research design and the research methods and the research process itself and also about the prioritisation process. And I’ve talked a little bit about that. The research process itself that will come through the grant application and the assessment process. So I’m hoping that the information I’ve given about the research plan itself, about the assessment process, our work with grant assessment committees, the assessment criteria, will give you a little bit of comfort that the involvement of consumers is central throughout our processes.

So I think we’re ready Elizabeth if you are to move to our questions and answers.

Elizabeth Deveny:

[Visual of slide with text saying ‘Australian Government with Crest (logo)’, ‘Department of Health and Aged Care’, ‘Question & Answer session’, ‘(please type in questions using SLIDO)’]

Sure. And thank you for all of that. That was very dense Masha. A lot to think about. And good to know that this has been recorded so that if people want to go through that and perhaps fast forward through my bit and then listen to Masha’s bit again because I’m sure some questions you’ve got might be answered by some of the information she provided.

So we’ve got a heap of questions now. Some of them were comments as a cheer squad there for Alicia so some of them are Alicia’s cheer squad which is wonderful. And comments about the weather which are fascinating. We’ve got close to 100 people online but I suspect some of you haven’t voted yet. But we’re just about to kind of go to the most popular through the list so if you haven’t and you want to now is a really good time to do that. And just while I give you a minute to do that and digest the presentation you’ve had I would comment that looking at the questions some of these questions talk about healthcare rather than research and they’re probably outside the remit of what this particular group particularly Masha and your team can solve. But what I’d like to commit to is that CHF will take the non-research questions, the questions about clinics and the PBS and things like that, we’ll harvest those and we will put them to the Department, to the other parts of the Department who could provide answers to those questions. And then Masha if we could have your permission we would put those FAQs up with this recording. Does that sound like an okay plan?

Dr Masha Somi:

Sounds good thank you Elizabeth.

Elizabeth Deveny:

Great. So I hope everyone’s happy with that. So we’ll focus these questions on the ones I think that we can answer today but I don’t want those that have put other questions that are equally important but just simply there’s no one here that could give you an answer to feel like that was a waste of time. We’ll take them. I have an amazing policy officer with me here Daniel. He’ll jot these all down and then we’ll work through which parts of the Department of Health and Ageing we think are best to answer these. And it takes a little time to download and upload webinars so my hope is in the next week or two by the time that’s done we’ve got our FAQs as well and then we’ve got that all there for you in the one spot. So we’ll give that a go and then really love your feedback to see if that was a good approach once we’ve done it.

So the first question – and quite a few of these will be to you Masha. So I’ll read them, give you a chance to think about. The first question is about the research itself. So someone’s commented that:

Q:        Aim four which is about identifying best model of care isn’t part of the funding and stream now is now exploring mental and physical health.

So I think they’re suggesting there’s been some change since the initial conception of a funding framework. Could you perhaps give an explanation for that change and why things were restructured the way they were?

Dr Masha Somi:

Yeah. Thank you. So as I mentioned with stream or aim four which was the models of care we felt that it was really important to give the research teams – that would include the academics, the health service providers and also the consumers – time to come together to actually design what those projects would look like. So these are projects that are looking at settings like rural settings, working with priority populations like First Nations and the frail elderly and also our culturally and linguistically diverse populations. And so we felt we needed to give them a little bit more time to actually do that codesign work and come up with a great proposal. So aim four is coming up. We expect it will open in 2024 for research to start in 2025.

We focused this current grant opportunity on aims one, two and three and I think the comment is around there is an inclusion of physical and mental health. So that was actually covered in the research plan. So it’s on page seven of the research plan. It says large scale multidisciplinary project in partnership with primary care providers and consumers to identify how people experience PASC including the impact on their physical and mental health and social and emotional wellbeing. So we really cut and paste from the research plan into the grant opportunity however we’ve staged it across two time periods. And that’s really to give the models of care to give the research teams time to come together to develop really good models that they can then put good research proposals forward.

Elizabeth Deveny:

Great. Thanks. Thanks for that. I’ve got another couple of questions about the plan so I might do those since we’re kind of on that area then move across. So there are a few comments asking about:

Q:        How are we going to make sure that international research is taken into account when we fund the things that we do in Australia so that we’re not duplicating or running in parallel, not talking to the rest of the world or we go on on our own little way to decide how this should be managed?

Can you talk about how your office does that and how this might be considered through the process?

Dr Masha Somi:

Yeah. So all applications have to talk to the research context. And so part of showing that your project is important and valuable is about being able to demonstrate how it complements and builds on existing research. And we have an assessment process that does account and look at those issues. So that’s sort of one element which is about the research process. I guess the other thing is the way that the research objectives have been outlined is that they do actually have a strong focus on the Australian context. And so models of care really are applied. They are focused on what is happening in Australia and how care can be delivered within the different contexts and taking account of the different priority populations. And same with the other aims as well. So they’re the sort of two main ways that we look to make sure that we’re not duplicating and actually we’re building on and improving on what’s already there.

Elizabeth Deveny:

And then there are a few questions related to the healthcare system more broadly kind of asking:

Q:        As we find things out how do we make sure that healthcare adopts them?

So for example someone’s asked a question about:

Q:        How will this roadmap and this funding help get medications for long COVID and PASC quickly onto the PBS?

Can you give a sense of how do your colleagues know what’s happening in the research world? How does Health understand that and what assurances can people have that as you’re finding things out things will be able to be quickly translated across into other policy environments and hopefully make change?

Dr Masha Somi:

Yeah. It’s a really important question because we know that the translation of the research outcomes into practice is often a really big gap. And so there’s a number of ways for us to look at that. One is we look at partnerships. So whenever we have applications we ask about who their research partners are and we ask them to have health services, we hope that they have Royal Societies and other groups that are involved in the research process, so that research can be applied through clinical pathways. That’s one way that the research is applied, that if you have health services involved in research they’ll disseminate it through their network.

There’s the traditional mechanisms that researchers use around promotion of research and dissemination of research. However as an add on within the Department because we are embedded in the Department we talk a lot with our colleagues from other parts of the Department. So the Office of Health Protection which has been responsible for delivering the broader plan of which research is one component, we work really closely with them. We’ll often if we have good findings or good news or find projects that will be relevant to other parts of the Department, we connect researchers with them. We’ll share findings and learnings and make sure that those connections are being made from a policy and program level.

Elizabeth Deveny:

That’s great. That’s really helpful. And I think this might be related and it might be a little bit to do with the questions you might ask the broader health community as well Masha. But I’ll ask you too.

Q:        Are there any pathways in place for promising novel treatments to be fast tracked in some way?

We have that with medicines more broadly with our HTA and so on where things can be assessed and novel treatments get quickly into use. How would that work with this?

Dr Masha Somi:

It might depend what the intervention is. So I think I totally agree with you Elizabeth. There are really clear pathways for drugs or devices or sort of specific therapeutics that are available. The pathway is probably less clear for other types of non-pharmacological interventions and that’s where we’re really reliant on working with our clinical colleagues particularly through the Royal Colleges to push out that messaging and to change guidelines and to change the advice that’s provided to clinicians as they do their work.

Elizabeth Deveny:

Fantastic. Thanks. And I’d just like to make a shoutout to anonymous number 17 because I don’t know who you are who said that we’re awesome. I’m going to screenshot this and show this to my children who would tell you that I’m absolutely not awesome. I’m going to show them I have objective evidence I am now awesome. So thank you for that.

There were quite a few questions about post-exertional malaise and in particular treatments which are kind of touting exercise and rehab focuses. And a number of the people in the chat very unhappy about those treatments having had personal experience or having read research to suggest that those treatments are not particularly efficacious. And I suppose they’re speaking about this but I’d even ask you a broader question. When we know that things don’t work or are questionable, might not work very well, how does the research process make sure we don’t keep funding things that don’t work well particularly in this case where we don’t have a lot of evidence about the things that do work well? How do we kind of I suppose filter out the stuff we don’t want to amplify?

Dr Masha Somi:

Yeah. It’s such an important question and a real challenge in clinical practice more broadly. It’s sometimes harder to stop people doing something than it is to get them started in the first place. And it’s a challenge that we certainly have across the MRFF where we think about – we call it low value care and we’re having conversations with health technology assessment committees around low value care and how you get people to stop. So I mean within the research context this is where the application and the assessment process is really, really critical. And as someone else mentioned looking at national and international evidence to look at what’s already been researched, what we know, what we don’t know.

We’re also reliant on – so with research it’s not just us as funders. There’s whole mechanisms that are in place locally to test research, to make sure that it’s safe and effective and that there is a benefit from doing the research. So there are ethics committees that are in place in hospitals and at universities and other academic institutions and they’re another really important mechanism because they are all research that involve people and animals, but humans, goes through these ethics committee processes and the key question that those processes ask is what’s the harm to participants? Is the potential benefit from undertaking this research, does that outweigh the potential harm that could happen to these patients? And so they’re really good processes and mechanisms for making sure that effective or good research is undertaken.

Elizabeth Deveny:

Yeah. Great. Thanks Masha. Now there’s a question – I’m going to move a little bit away from the plan. I’ve got some other more broad questions. There’s a question about equity. So you did talk about that in the plan and how there are a number of things that we’ve put in place like asking that certain communities are engaged, asking that certain parts of Australia particularly in remote and rural locations were engaged and that across the health system, so primary care as well as acute and the research communities. So someone’s asking:

Q:        Will there be an equity lens also applied when deciding which processes are funded apart from those things that are already in the plan?

Dr Masha Somi:

Yeah. So we have to rely on the assessment criteria and the assessment criteria look at the impact and the unmet need as well. And so I think it’s accounted for in all of our grant opportunities including this one. So as you’re saying Elizabeth there is specific funding for specific populations that have been called out by the expert advisory panel but more broadly we are interested in priority populations and we ask additional questions in our assessment criteria around priority populations. We don’t have an extra layer above and beyond though what is in the assessment criteria other than sort of our general support and promotion for addressing areas of unmet need.

Elizabeth Deveny:

Thanks. That’s good to clarify that. Thanks Masha. Then there’s a question about consumers. Love questions about consumers.

Q:        Are there any plans for the MRFF to fund consumer engagement to codevelop the research questions before?

So I can speak from personal experience. I get the letter a day before it’s due asking if we would like to be involved. And this is true for consumers too. Often they’re asked to make a comment on a decision about research. So in this case we’ve got a plan. There will be a lot more things that happen next. So how do we make sure that consumers are engaged proactively? You’ve talked about what you do. Is there anything else you’d like to add here?

Dr Masha Somi:

Just to acknowledge it is a really challenging part of research grant funding that the work that happens ahead of the application being submitted, that’s generally not funded. And that’s particularly challenging when involving clinicians and consumers, the people who actually need to kind of be involved to help design and drive the research questions. So we acknowledge that as an issue and we’ve heard that as an issue particularly from our consumer reference panel and we’re just thinking about it. It’s quite challenging and it’s a problem across the whole system. And researchers as well talk to us and say ‘You want us to have ongoing relationships with consumers and with clinicians and we don’t have the capacity and we’re not funded to do that work’. So just acknowledge it as an issue.

We have seen some really, really good practice and really good examples though of how researchers and consumers have been able to get together and do that formative work and some of those examples were showcased in the webinar that I mentioned earlier that’s available on our website. And also just call out that in the MRFF we’re really clear that consumers are able to be funded through the direct research costs. Sometimes consumers will say ‘I’m participating and there’s no funding for me’. And I just want to be really clear and we’re always telling researchers there’s nothing that precludes them from putting it in as a direct research cost. It is a cost associated with being able to deliver and implement the research. And so part of it is a bit of a cultural change with researchers to get them to think early, to put it in the budget as part of their application rather than they realise they need the money later and they can’t fit it in within their existing budget. So they’re conversations that we’re having with researchers as well.

Elizabeth Deveny:

Great. Thanks. Someone’s asked a question about safety too. So we have things like the TGA so if there’s a pharmacological problem it gets reported through their adverse events and other monitoring. But we don’t seem to have the same systems in place for the non-pharmacological. So if this research funds some non-pharmacological interventions how do we make sure that if there are any early signs that there are safety issues that these are captured again potentially across a range of projects and how I suppose – I think this is probably working with other aspects of Health again but have you got any thoughts or maybe you’ve done this in another study. How do you manage that when the pharmacological might just be caught up in the usual process but if you’ve got non-pharmacological what have you done in the past or what might work to keep the trial safe?

Dr Masha Somi:

Yeah. So within a trial they would be having safety protocols and a lot of trials particularly the big ones have separate safety committees that actually overlook independently all the data that’s coming through and do a really good check to make sure that nothing harmful is proceeding. It’s really difficult with non-pharmacological interventions. So I think within the trial we can be confident that they would be ceased and we’d be hoping that that would be disseminated through a publication or through some other mechanisms that would then alert other health professionals to the risk of that particular intervention.

Elizabeth Deveny:

There were some questions – a question I asked you earlier about international research and also a question about treatments that we know either don’t work or do harm. So I think people are interested to know that okay how do we make sure that we spend this money meaningfully and what criteria or what mechanisms do we put in place to make sure these kinds of issues that are being raised – this is kind of I suppose the meta question that those other ones sit underneath. How do we make sure that what we end up with is some meaningful research results?

Dr Masha Somi:

Yeah. And I guess what I can talk about is there’s a process but what makes that real is how well that process is implemented. So we when we’re setting out the guidelines are really clear about the fact that we want novel research that produces good outcomes and we set assessment criteria to that end. We then have to rely on an expert panel. So the applications come in. We’re assuming they’ll be expert researchers putting together applications and wanting to do the very best research that they can. That will go in. We’ll have an independent assessment committee that will comprise consumers and clinicians. We’ll have some international people on there as well. And they’ll look through all of those applications and anything thought that it was unsafe or inappropriate or not best practice or duplicative that won’t be rated well. So we’re reliant on that assessment process as well.

And finally as I mentioned earlier there are local arrangements to make sure that research is safe and effective through the health and ethics committees.

Elizabeth Deveny:

Great. Thanks Masha. We’re nearly at the end so I’m just going to have a look, a quick look through the Slido and see if I find one or two questions or areas where we really haven’t had a question asked. And I’ll ask you that in a moment. So I’ll just give you a moment to take a breath.

Dr Masha Somi:

Thanks Elizabeth.

Elizabeth Deveny:

And just a reminder for the next steps for those of you that have maybe missed that, this is being recorded. We’ll pop it up on the Departmental website and you’ll be notified in the usual way. But it will come out in our socials and so on. So we’ll let you know when that’s up. Meanwhile I’ve made an undertaking to take the various health related but not deeply research related questions separately. There’s a few of those and it’s a bit of a big job so bear with us. But we’ll identify them, probably put them into themes where that’s relevant, and then also take them to various parts of the Department, get an answer and then get that popped up. We’ll again probably share that on our own website but also link to where this webinar is so that ideally all of those are together and hopefully that will be helpful for everyone. Because there are lots and lots of questions and I appreciate that.

I suppose maybe a good question to finish up on is someone asked about low hanging fruit. So some people have been experiencing these disabilities as a consequence of COVID for a long time and somebody made the comment that maybe by the time the research results are implemented it might be too late for them. And certainly it will impact on them over that time. So you talked about the platform which I think is one way to make sure that we do lots of different testing, test things, do that kind of failing fast and being able to be nimble in the way we do things. But I don’t know that you need to reiterate that. Though of course you can. Are there any other things we’re doing to help make sure that when we do find good things – because we all know that when they are found out it takes a very long time for them to hit clinical practice and as you said if someone’s already doing one thing to get them to change to doing something different requires a lot of change management and kind of cultural support too. So what are we doing to try and again just harvest those really great learnings that we get and apply them quickly? Anything else you’d like to add?

Dr Masha Somi:

I mean obviously we’re working hard but I might reflect that there are groups also within sort of health and medical research and the clinical sector who do really focus on this part of the work, of taking what’s known and applying it into practice. So there’s a group of what’s called research translation centres and their whole reason for existing is to work with health services and academics to really translate into practice the things that are required to improve health outcomes. So whilst we’re doing that work here there’s lots of different parts of the system that are actively trying to do this implementation as quickly as possible. So that’s just the work we’re aware of. There’s a lot happening at state and territory level. I’m sure all of the Royal Societies are really actively working and monitoring and doing as much as they can in this area as well.

Elizabeth Deveny:

Thanks. Alicia I’m going to come to you in just a moment and just ask if you’ve got any other thoughts. So I just thought I’d give you a bit of a heads up. I’m conscious we’ve got about three or four minutes left so we need to start doing our finishing and thank yous. Just before I do that Masha was there anything particular you wanted to add before I go to Alicia?

Dr Masha Somi:

Nothing further to add. Just to thank everyone for dialling in and listening and for the great questions. They’re all really thought provoking. And to thank you Elizabeth as well for being such a great chair and bringing us together. So thank you all.

Elizabeth Deveny:

Thanks. And Alicia I’d love to give you the last word. So you’ve been sitting in listening to us rabbiting on. Are you feeling any more hopeful? Do you think we’re heading in the right direction?

Alicia Newnham:

Thank you. I am feeling a little more hopeful and it’s actually opened my eyes too to what’s involved. You think it should be simple but in actual fact – and I feel for all of us long haulers and again those who have suffered for years with ME/CFS and the other awful things.

Yeah. People who have been living this – and I say ‘living’ – living this for over three years it just must feel like a lifetime. But I guess now I know I have more of an understanding of why things take so long. But it does feel hopeful that this is the start of something positive for all of us I hope. And yeah I guess my strongest feeling about the whole thing is that we definitely need to – those with lived experience definitely need to be involved to be able to submit their input. So again for this opportunity thank you and for anything moving forward where people can get involved who know what’s happening it can only be a good thing I think.

And I do have to give a little shoutout to all my fans. Thanks guys. Honestly - - -

Elizabeth Deveny:

That’s all right. I can feel a TikTok account coming your way Alicia. I’m sure your kids can support you with that.

Alicia Newnham:

Well they might have to run it for me because I certainly don’t have the energy or the brain power to figure that out. But would not be here or have gotten this far without the support of that long COVID community on Facebook. It sounds ridiculous to people who don’t know I’m sure but if you can imagine being isolated for such a long time while the world carries on as though COVID never existed, to have people out there that you can reach via message or just to comment something, ‘I’m having a bad day’ and the support you receive from people who know, nothing beats that really. And so if we can get more of those voices heard, because there’s children suffering. You just don’t – it’s devastating. It really is. So yeah I feel that this is a very positive thing. Thank you.

Elizabeth Deveny:

Great. Thank you so much Alicia. I’d like to thank everyone from Masha’s office and also from my team who helped us get this to where it is. Big thanks to our new megastar Alicia for spending the time with us today and preparing. And special thanks to everybody here. Some of you I know this is tiring to be sitting and listening to this. It’s also stressful because you need answers that we can’t give you today. I appreciate that. I appreciate your time, your good questions. And so as I’ve said the next steps are we’ll get some answers for you and we’ll put this up and I’m sure that Masha and her team will continue the conversation with you over the coming months and years as this research comes to fruition.

So thank you everyone for attending today and I hope the rest of your day is as good as it can be for you.

Dr Masha Somi:

Thank you.

Alicia Newnham:

Thank you.

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The webinar was hosted by:

  • Dr Elizabeth Deveny, Chief Executive Officer (CEO), Consumers Health Forum of Australia
  • Dr Masha Somi, CEO, Health and Medical Research Office
  • Ms Alicia Newnham, consumer representative.

Topics included:

  • the MRFF PASC Research Plan
  • what the plan means for consumers
  • representation of consumers in the development of the plan.

A questions and answers session followed. Read the responses to questions raised by consumers.

Read the webinar presentation and responses to questions.

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