Sarah:
Anthony: As you mentioned, I qualified as a critical care nurse back in the early 2000s. It feels like so long ago, but I was really interested in the pace and the variety of critical care environments. As a critical care nurse and specialist, I was given the opportunity to be responsible for people facing real difficulties, often with acute exacerbations of their chronic conditions.
The majority of the people I looked after had complex heart and respiratory issues. I was awakened to the challenges and stresses that asthma imposed on people back then. Once I saw an opportunity arise with Asthma Australia, I saw that as a significant opportunity.
The evolution of my career pathway led me from critical care nursing to joining Asthma Australia. I also did some work in the humanitarian sector, working in emergency situations with Médecins Sans Frontières. One of the things that experience highlighted was how much we take for granted in managing chronic diseases in Australia, and how little access people in low-income countries have to the most fundamental care and medical treatments that we take for granted here.
A couple of those experiences came together at the right time for me, and when an opportunity came up with Asthma Australia, I took it because I really wanted to be part of an organisation that thinks about people and their chronic conditions like asthma, and works towards preventing the burden that asthma imposes on people.
Sarah: I
Anthony: I think it does. I can really empathise. I really understand and reflect on real experiences I’ve had, seeing people at the precipice of their critical exacerbations and bringing them back. Unfortunately, I have seen one or two occasions where the fight has been unsuccessful, and it obviously touches you – you never forget it.
I’ve seen tragedy in all shapes and sizes, but watching someone struggle for breath as it threatens their life is a unique kind of reflection I have from those critical moments. So absolutely, when I think about the work we do at Asthma Australia, and we mobilise, and we agitate, and we establish our strategies, and go out and form partnerships, it’s really driven by our ability—our real ability—to change the course of people’s journeys in tangible ways.
So they’re less likely to reach that point: in an emergency department, in an intensive care unit, on a breathing machine. And that, indeed, helps me do the job I do, and hopefully, do it well.
Sarah:
Anthony: It’s my pleasure too. Asthma Australia is a great organisation. I’ve been with the organisation for 10 years now, and I’m with them because of their vision of helping people breathe better so they can live freely. We’re the leading organisation around people with asthma that does that. We aim to develop programs and initiatives—we do develop programs and initiatives—and we implement them, all designed to improve the lives of people within the context of their overall ecosystem.
We’ve made some significant improvements and evolutions over the past few years. Where we might have previously argued that our role was just in supporting the education and information needs of consumers—people with asthma themselves and their families—to help them better navigate the healthcare system and their overall social networks, we’ve now realised that if we only support one part of that ecosystem, we’re not going to get anywhere, or at least not as far as we’d like, as fast as we’d like.
Asthma Australia now has an eye on the socio-ecological layers, if you like, around a person with asthma, and we go through rigorous processes to design responses that help people across those layers of the socio-ecological framework. So, they’re better informed, their healthcare providers are better able and motivated, their community is healthy and supportive, the air they breathe is as good as it can be, and the policy settings and political system are working in their favour.
Sarah:
Anthony: Yeah, sure. Look, I’ll go into it in a couple of ways related to the work that I do specifically and what I’m responsible for. It’s a huge question and a significant body of knowledge, really—translation and implementation of evidence. But suffice it to say that in asthma, we’re actually lucky to have a prolific amount of information and a continuous generation of new evidence. We’re surrounded by data and information in general, but in asthma, it’s a high volume.
So, our job at Asthma Australia is to ensure that we provide relevant information to people with asthma in a way that’s accurate, accessible, complies with regulations, and is up to date. There are probably more components to what we task ourselves with to bring health knowledge and information to people with asthma.
Another part of it is about having our finger on the pulse so that when something changes, when new evidence is uncovered, when discoveries are made, we’re in a position to translate it. This means turning it into a product, policy, service, model of care, piece of information, digital resource—whatever it might be—that can be meaningful and help a person with asthma live the life they should live with their asthma.
So, the knowledge and translation aspect of my job centralises around ensuring that the information is the right information and getting it out to the audiences. But then there’s a whole complex science around implementation and translation, which probably warrants another whole podcast—but I’m happy to get into that.
Sarah:
Anthony: It is really important. And as I said, in asthma, we have that double-edged sword where the volume and rate of change and innovation is huge. And that’s good, right? So, we’ve got an embarrassment of resources and information that we can draw upon, filter through, triage, and curate—I guess, turn into products for our audiences. But that comes with challenges as well. So our job is to ensure we’ve got mechanisms in place to capture everything that’s changing and developing and evolving around us—mechanisms in place that help us filter the abundance, allocate time and energy to the solutions, and ensure that those solutions are, as I mentioned before, compliant, up to date, accurate, and accessible to the audiences.
So, it’s volume and rate of change. And then there’s the really important one that often gets overlooked. It’s around the lack of investment in really meaningful ways in the needs, the evidence needs, and the evidence gaps of communities and populations most struggling with their asthma. For example, Aboriginal and Torres Strait Islander people in Australia, almost in all metrics, experience twice the burden of asthma than non-Indigenous Australians. But we know that, unfortunately, we predominantly undertake research investigations with populations that don’t identify as Aboriginal or Torres Strait Islander, yet translate the results of those investigations and research to Aboriginal and Torres Strait Islander communities.
The huge challenge is that, on the one hand, we’ve got a high volume and abundance of change and innovation, and on the other hand, for the people who really need it, there is very little. And how do we mobilise or generate interest in investment upstream so that those evidence gaps are being addressed, so that we can work on the translation of them?
Sarah: Absolutely. Before I move on, I just want to give you kudos—I really liked your explanation. Your use of “an embarrassment of resources” as a collective noun is great, and sharing it with a panda makes it even more accessible.
Branching off from what you were just talking about, what are the keys to making some of that really complex information more accessible to patients? I ask because a lot of our listeners are responsible for creating resources for patients. So, what are some of the keys to taking that really complex information and distilling it down to make it more accessible?
Anthony: So what we do is refer to health literacy best practice guidelines, and we’ve got a team that includes a health promotion specialist who has a subspecialty in health literacy and leads the organisation in ensuring that health literacy principles are embedded in everything we do as we develop, hopefully, meaningful things for our target audiences. Some of those guidelines or principles of health literacy always emphasise thinking first about your audience.
What is meaningful to a teenager with asthma is going to be different from what is meaningful to an older person with asthma, or a person with a certain education level compared to another, or someone who is at a different part of their journey with asthma—maybe someone who’s recently diagnosed compared to someone who’s had it all their life. So, it’s really important to think first about your audience, what’s important to them, and how they access their information in the context of their lives. It’s not easy, and we’re not setting ourselves up to imagine that we can reach every one of the 2.8million people with asthma in Australia, but there are ways to start grouping audiences to think about how to nuance your products for them.
Health literacy guidelines would also suggest reducing the intensity of information in a product, whether it’s a digital product, paper product, or otherwise, by focusing on key messages and not the whole body of knowledge behind a concept. Presenting the key messages in appropriate ways for the audiences you’ve identified, or that you’re trying to reach, in a low-intensity way—using white space, images, and a variety of media—again, thinking about the audience you’re trying to reach.
There are tools you can access to assess the readability of your products. A SMOG index is one of them. There’s another one—the name escapes me, but I’ll come back to it. Anyway, with the SMOG index, you can upload your content into an online tool, and it tells you what the readability of that item is. It’s always good to lower the readability of the item to make it more accessible to more people without diluting the key messages.
And then, really importantly—and I think this gets missed a lot—is testing and adapting content with real people. So, if you’re talking to a young person with asthma and you’re developing a key ring, a business card, a flyer, or something that you think has the message they need to hear or read to change their behaviour, then you want to test that product with them to see if it’s really something they’re going to respond to, or if they can actually access it in the first place, before you go and print a million of them or invest in distributing them across digital channels. Testing and adapting with real people is a key part.
Sarah:
Anthony: There are, and unfortunately, they’re the same pieces of information—the same things that needed to be explained and understood better. Let me rephrase that. It’s the same issues as they were 10 years ago. Unfortunately, we’re not seeing progress; in fact, we’re probably seeing a regression from where we were 10 years ago. Asthma is a complex chronic condition. It’s not something that comes and goes only when you feel the symptoms. The symptoms are a manifestation or a sign of an exacerbation of the condition that’s always there.
Like other chronic conditions, such as high blood pressure or diabetes, you may not feel them or notice them on a day-to-day basis, but they’re there. You trust your doctor’s diagnosis of them and the medicine they prescribe to manage it, despite not feeling it every day. It’s the same with asthma. It’s a complex condition of the airways, characterised by inflammation, and the treatments, according to internationally renowned guidelines, are prescribed to address that inflammation to prevent an exacerbation of the condition. But people with asthma seem to be unfamiliar with that simple and fundamental message.
And it seems, respectfully, that there are too many touch points within the health system that are failing to reinforce those messages and are allowing people with asthma to consider their condition as an episodic one, with treatment being rescue-based rather than preventive-based.
Sarah:
Anthony: Thank you for asking because that’s the other thing I wouldn’t mind reinforcing. It’s a particularly complex and tricky condition to get your head around, even as a person with experience. As I mentioned, I had a lot of experience managing asthma in emergency departments in my prior life, but I’ve learned more about asthma since working with Asthma Australia—probably in the first year of working with them—than I did in the 10 or so years of my clinical career prior to joining.
I’d say, and it’s easy for me to say, it’s uniquely complex. It’s a condition of the airways, and I think we, as a culture, don’t really appreciate or assimilate ideas around diseases or conditions affecting our airways as we do with other, more familiar, and readily accessible conditions in our society, like those around the heart and other parts of our body. The treatment being an inhaler is pretty unique. Aside from diabetes, where people with type 1 diabetes need to use an injection to treat their disease, there are really few other conditions where patients need to use this funny-looking, oddly shaped device that occupies space, is heavy, and a bit expensive, but delivers medicine into the airways to manage the condition and relieve symptoms.
So, it is really idiosyncratic. We think it’s really important that people diagnosed with asthma, or those who have had asthma their whole lives, are given an opportunity to understand everything they need to about their asthma, and probably come to Asthma Australia to do that and to learn those things. We’ve got a variety of resources on our website for a variety of audiences and on a variety of topics, from diagnosis to later stages of the condition and all of the things that interact with it.
We’d really like to imagine that clinicians diagnose a person with asthma and then just automatically have a reflex where they say, “Go to Asthma Australia’s website—here it is, here’s a phone number, give them a call,” because I can’t underestimate your education needs and how important that is for you to be a good self-manager of your condition.
Sarah:
Anthony: Peak flow is a useful measure that provides insights into whether there’s an obstruction in the lungs and whether there may be some deterioration in the airways of a person with asthma. It gives us information that supports diagnostic decisions in asthma, as well as how a person might be responding to their treatment and how the condition might be changing on a day-to-day basis, as indicated by the peak flow measurements.
What’s really important, as with any tool used in the management of chronic conditions—and especially with asthma—is that people with asthma discuss the role of peak flow and peak flow measurement in their asthma management with their doctor. This ensures they use it appropriately and safely.
It’s important to know that asthma is a variable condition. For one person, it can change in the way it manifests over time, and it can vary significantly between individuals. There’s no one-size-fits-all approach to how to respond to peak flow in asthma self-management. It’s really important for a person to have a chat with their doctor. The doctor will probably go through some processes, check the peak flow technique, then have the person take some readings at home, and come back to discuss what those readings mean and how they can be used in ongoing asthma management.
Sarah:
Anthony: Vulnerability to respiratory infectious diseases is a huge one. I think people with asthma, as well as those without it, will all recognise how bad and difficult this winter has been, especially on the eastern seaboard, with how prolific some of the viruses have been. Respiratory syncytial virus (RSV), influenza, and COVID continue to be present in the background—though probably not so much in the background for a lot of people. There have also been the odd cases of pertussis and other unusual or what they call atypical infections out there in the community.
I think it’s been a particularly challenging season and one that just highlights the vulnerability of people with respiratory illnesses like asthma when the seasons operate like they do. And then, as you mentioned, there’s air quality, smoke events, aero-allergens like pollens, and inhaled mould, which has been a big issue over the years with asthma.
What’s probably under-appreciated is the relationship between asthma, especially in early life, and the development of other significant chronic diseases later in life, particularly associated with asthma’s presence in early life. So, it really just reinforces how important it is for us not to be complacent or nonchalant about an asthma diagnosis and to do everything we can to get people on track as soon as we know they have asthma so that they’re less vulnerable and more able to prevent complications later in life.
Sarah: F
Anthony: For us, the most important asthma-related concern is how it impacts the health of children. It’s the most burdensome disease of childhood up to the age of 14. It keeps kids home from school, sends them to the hospital in the middle of the night, and disrupts families in those ways. It’s the most prevalent condition in childhood and the leading cause of hospitalisation.
Asthma itself is a significant concern for the livelihoods of too many children in Australia. It gets in the way of them having some semblance of normal development and opportunities. Compared to children without asthma, kids with asthma often struggle to achieve their academic, social, and physical developmental milestones.
So, yeah, that’s a big focus for us. It’s a difficult problem to budge—problems that have been so burdensome for so long often are. But we are aware that there are many examples of effective programs, policies, and other implementation models that have been successful in improving outcomes for children across Australia, whether they were primary healthcare models, hospital-based models, integrated models, technology-enabled models of care, or educational resources.
What we want to do moving forward is create a forum where we can collate all of those examples that are having a positive impact, and use our influence and role in the system to see if we can scale and implement those, connecting them where they can be connected. This way, we can help those who are looking after people with asthma and help children with asthma directly, perhaps moving them off the top of the burden table and letting another disease take that place.
Sarah:
Anthony: It’s super exciting. Asthma Australia led a project in 2021–22, which we published at the end of 2022, called the National Asthma Research Agenda. Essentially, that was an exercise to determine what the research priorities were for people with asthma, so that we – as research institutions, research funders, or researchers—didn’t impose our own ideas of what the priorities should be.
So, we asked people with asthma themselves, their carers, and health professionals what they thought the priorities were, and we went through a methodical process to define the National Asthma Research Agenda. In communicating that agenda across a range of communities, we reached a few audiences who found the priorities raised in the agenda to be quite interesting. There was also an intriguing signal about the idea of the research community taking on the ambitious goal of looking for a cure, which was seen as a realistic ambition by some.
We’re really happy that this agenda exercise led to a game-changing conversation with a few key people who have the capacity to run and deliver such ambitious work. Since then, we’ve been leading the Cure Asthma Project with the University of Melbourne. The project aims to use the technology that’s available to us now in the 21st century—technology that’s been available for the past 10 or so years. This includes bioinformatics and computational methods to analyse biological systems and processes.
Australia has unique access to 60 years of information, data, and material samples from people with asthma, which we’re using to answer questions we haven’t been able to answer before. At the same time, we’re unpacking some of the mechanisms of asthma disease, particularly as a result of viral illnesses or air quality injuries. We’re also applying new drug discovery technology to these biological or molecular explanations of disease, with the hope of proving that there is a viable cure out there for types of asthma.
The next step is taking this to those who care about it to fund clinical trials, and hopefully, leading to a solution that’s available to people in the not-too-distant future, although it’s likely to be a decade or so away.
Sarah:
Anthony: I’d recommend people check out the range of asthma resources on Asthma Australia’s website. As we move out of winter and into spring, you’ll see an upsurge in resources addressing the kind of hazards that spring brings to the lives of people with asthma. Hopefully, these resources will be useful to clinicians, who can make them available or point their patients to them.
This is the story across the calendar year with asthma. After spring, we develop resources around the potential for bushfires and smoke events, and then focus on back-to-school issues and other seasonal concerns. So, look at the range of information on our website—hopefully, it’s engaging. There are various media there, from videos to other tools.
We’ve recently developed a short GIF that demonstrates the hazards of systemic corticosteroid therapy used for asthma flare-ups compared to the local distribution of inhaled therapies. I think you might find that interesting.
Yes, thanks for the opportunity to draw attention to Asthma Australia’s resources. I appreciate the chance to share, even though I should have done my preparation from the ground up.
Sarah:
Anthony Flynn
Director of Health Knowledge and Translation
Anthony is the Director of Health Knowledge and Translation at Asthma Australia. In this role he oversees Asthma Australia’s research program, strategic evaluation plans and supervises the quality development of consumer information and education resources. Anthony has a Masters Degree in Social Sciences and is a registered nurse who specialised in critical care nursing. He is responsible for connecting the need of the person with asthma with strategic research and evaluation decisions and the translation of these into consumer benefit.
