Future Hospital and a Manifesto of Care

Leah Heiss:

Hi everyone. My name's Associate Professor Leah Heiss. I'm from Monash University, the Design Health Collab, where I'm the Eva and Marc Besen International Research Chair in Design.

To introduce myself, I have pale skin, I have green eyes, red lipstick, a red and black dress that I'm wearing today. I'm in conversation today with Associate Professor Keely Macarow from RMIT School of Art as part of the Form x Content series presented by Monash Art Design and Architecture and programmed by Monash University Museum of Art. Over to my friend, Keely Macarow.

Keely Macarow:

Thanks so much, Leah. It's lovely to be chatting here today. I've got brown hair and pale skin, and I've got brown lipstick on, not red lipstick, and a black jumper with a blue sleeve. And my background's Russian Jewish. I think that was something to add to... It gives a bit of context. I'm not sure you even knew about that.

Leah Heiss:

I didn't know about that at all.

Keely Macarow:

Tell me about your family background quickly.

Leah Heiss:

Well, my mother is Australian, so, many generations Australian, but from Irish descent, and my father is from Austria.

Keely Macarow:

Oh.

Leah Heiss:

So that's where the name comes from.

Keely Macarow:

I thought it must have been. I think I might have known this actually, but Heiss, yeah, I did actually think Austrian or German.

Leah Heiss:

Yeah. So from the mountains in Austria.

Keely Macarow:

Well, originally on one side of my family, the family name was Rosenfeld, and that's obviously German for Rosefield. So I have German heritage in the back of the Russian, years and years and years ago.

Leah Heiss:

Amazing. And what will we talk about today, Keely? We have a bit of intersection between our practices.

Keely Macarow:

Yeah, so around creative practice and health. But it would be interesting to contextualise it too with what's going on at the moment, because we've been working around creative practice, art and design and that intersection, in terms of health, for a long time. But I'm not sure if you have actually noticed this and maybe because there's a lot of work that's been going on in design on health for quite some time, but for many years there were often people in my school who weren't quite sure what I was always doing, and maybe even friends in a way sometimes too. But because of the pandemic, people just got it. And there's so many more people actually interested in working in this area as a result, which is great. The pandemic's not great, but great that a lot of people are thinking more about health.

Leah Heiss:

Absolutely. Because it is ubiquitous, isn't it? It's in our everyday lives. We're thinking about health and wellbeing continually and the way that we can design systems better. So I think it'll be really helpful for me, because I haven't caught up with you for a little while, if you can just give me an overview of all the amazing work that you've done, what you're doing currently, what stands out for you in the past.

Keely Macarow:

Well, I actually started this work years and years ago. I did a PhD a long time ago exploring people's experiences with HIV/AIDS and cancer through exploring artworks, film, video, photography and installation and literature. So it was around creative responses to health and wellbeing, but particularly in terms of HIV/AIDS and cancer and looking at commonalities and differences. But also was really interested in how that connected to activism and economics and taught myself to understand statistics, to understand all of that. So because of all of that then and because I had also curated before that an exhibition called Virus System Mutations very long, long time ago I just ended up getting into it. You see how it goes.

Do you remember when we worked with St. Vincent's Hospital, that actually started from years ago when I curated an exhibition called Virus System Mutations, which was part of the Melbourne Festival and it was situated at the hospital. And then the curator there went searching for me to do more projects. That's how I started the relationship there, which we also took off with in terms of the work that we did with them. So what I'm trying to say is, it just takes a life of its own. So a lot of the work that I've been doing for years has been in hospitals, both in terms of teaching and research projects. And because of the work I did with St. Vincent's Hospital, then I also had someone from the Karolinska Institutet, a colleague, Carol Tisherman, got in touch with me, Karolinska Institutet's a medical university in Stockholm, and wanted me to be involved with projects that they were developing. So I worked with them for about eight years on funded Swedish Research Council.

Well, there's a number of different Swedish Research Councils, but we had funding from a number of different Swedish Research Councils for projects we were investigating, end-of-life, in terms of space and place in terms of end-of-life. And particularly in terms of working in elder care residences. So it's not called aged care in Sweden, it's called elder care. So I work with interdisciplinary team of nursing and palliative care researchers, elder care researchers, and also designers, choreographers. And I was involved with that as well.

So that went on for quite a while, eight years, couple of different projects, lots of trips to Sweden, lots of online meetings and a couple of articles coming out of that. And of course the work that we did together prior to that in terms of the medicalised jewellery. At the moment I'm actually developing projects. I've done a lot of writing in the last couple of years because it wasn't always easy to get out. Although at the same time I've kept up my project, Homefullness, with Neal Haslem, who's an artist, a communication designer. That started around 2012 and we're still plugging away at that. We were in an exhibition in Venice last year with that work.

Leah Heiss:

What is that work about?

Keely Macarow:

So Homefullness, as opposed to homelessness. It's always connecting with discussions around housing, whether it's homelessness or affordable housing or housing stress. We've always had a manifesto, we write manifestos and then we work around manifestos. So we rewrote our manifesto because we were invited into the European Cultural Center's biennial which links to the Venice Biennial, they connect together. We were in their architecture biennial last year. But it's interesting, that's quite a different project to the art and design health projects. But at the same time, it is about human health because if you don't have a home, your health and wellbeing can really be impacted quite severely. So I see that as also a project about health, even though it's actually addressing other concerns in many respects. I think that's what's interesting about this area because the health implications are tied together to many social issues and social concerns.

Leah Heiss:

Yeah, and it's so broad ranging, isn't it?

Keely Macarow:

Yeah.

Leah Heiss:

When I first met you, you were just coming out of that fantastic project, Designing Sound for Health and Wellbeing with St. Vincent's.

Keely Macarow:

Oh yeah.

Leah Heiss:

So that was a pretty amazing touchstone project, I think, in your practice.

Keely Macarow:

Yeah. I forgot about that. Actually, I was in conversation with someone yesterday and they said they were reading our book about that project and it was by their bed, which I thought was quite sweet. It's funny how things can go out of your head. That was a Australian Research Council linkage funded project where we worked with St. Vincent's Hospital emergency department and developed series of sound compositions, which we tested on emergency patients to see whether they alleviated their stress and anxiety while they were waiting for medical attention, which they did. Yeah, that was about three and a half years, but went on a bit longer because of all the writing and everything. That was great in terms of getting that proof. Because we did that through a clinical trial in terms of... you know, creative practice does matter. Actually, when you measure it through clinical practices, it does actually a great impact on human health. So thanks for reminding me about that because sometimes I forget I've actually got the evidence that the work we do matters a lot.

Leah Heiss:

And what I think's interesting there, and that's got parallels with some of the work that we do, that the evaluation of creative practice is so often left out of funding mechanisms, that you're not able to generate that evidence that can sway hospitals or governments to implement and just keep implementing those creative approaches. That's just one of the things that comes up for me. Unless you've got the evidence, sometimes it can be quite a hard thing to convince people to go through these long creative practices.

Keely Macarow:

Yeah, that's why we've worked with St. Vincent's for quite a while because they got that and not everyone does. But I think a lot of people are getting more and more interested in this without necessarily seeing examples of the impact. That could be tricky. It's interesting because we had to do that through a clinical trial. We couldn't go back now and apply for the same sort of funding from the Australian Research Council because they see that as a project that the NHMRC should be funding. But the problem for us is that the NHMRC are not going to be funding projects which are foremost art and design projects, even though they're totally working with health and wellbeing or whatever researchers. But it's not pure or applied medical research in that way. So that can be tricky. But the impact is so important in terms of research anyhow. But you're right. We're not always applying the mechanisms because we don't always get the funding that we need to do that, because that's long term. Unless you do something like a short-term clinical trial, which can actually provide certain evidence.

Leah Heiss:

That's great. Yeah, interesting, that could be something for us to chat about too at some point in this conversation, is what are the structures that enable us to do this kind of work, the barriers, but also the opportunities. And so when we think about sometimes creative practice research in design for health, that kind of falls between NHMRC and ARC, can be quite challenging, or you just have to be quite cognisant of those expectations when you're writing things, situating your practice in certain ways with its various funders.

Keely Macarow:

Well that's right. We were very fortunate to have Gandel Philanthropy funding for our Smart Heart necklace. And that obviously is another space to go to where they're just interested in ideas, aren't they? It also connects with foundation priorities around art and around health and medical research. So that's where you can actually connect that. But I wish here, as in other countries around the world, that the research councils were more open because this work is really important. And they actually know it, but they're just not opening up the space as much as they should be.

Leah Heiss:

Shall I give a little bit of context about my practice?

Keely Macarow:

Yeah, absolutely. And also tell me what you're up to now.

Leah Heiss:

Too many things. So my practice, Keely, as you know, but as the viewers might not know, is really focused on designing wearable health technologies and services and experiences that aim to improve or save life is the big goal, which is quite lofty, but it's an overarching ambition. So the work in wearable health technologies is from things like, I worked with Blamey Saunders here to design a new hearing aid. So that's a modular hearing aid that makes it easier for people who have visual impairment or tactile insensitivity or arthritis to change their batteries. And that piece of work was interesting because I was looking at the idea of destigmatising medical technologies through design. And so it was informed and inspired by the Mineralogy Collection at Museums Victoria. And the idea there, was to try and bypass the instinctual fear response that we have when we're confronted by something really frightening. What is frightening is losing a sense, so if we can make things look and feel like they align with our sense of self identity then hopefully we can bypass that fear and instead elicit a sense of, I guess, curiosity or wonder or interest in our medical technologies.

So that's a chunk of the practice is really around redesigning technologies, but also focusing at the moment on smart wearable devices, using biosensors and stretchable sensors and things like that. So there's that technology piece, and then there's also doing a lot of work in co-designing new models and systems of care across the healthcare sector. And that's taking all of the design principles and practices and ways of thinking and doing which are around prototyping, but you're applying it to systems and services. So prototyping lived experience. And I've designed a co-design toolkit a number of years ago called The Tactile Tools. That's a really lovely toolkit of shapes that you use to map the lived experience of health seekers. And we've used it to map out or to inform voluntary assisted dying guidelines and legislation in Victoria and in all sorts of settings like brain injury and cancer and end-of-life and aging in place and a whole bunch of things.

But more recently, because of COVID, we have pivoted to the online, and now we run large-scale online workshops with the digital toolkit to co-design new models of care. And that's, for instance, with our partners at Alfred Health to co-design a new model of care for residential treatment of eating disorders.

Keely Macarow:

Oh great. That's good.

Leah Heiss:

Yeah.

Keely Macarow:

Wow, I'm intrigued about how you're doing that online because I've seen those tools and they're beautiful, so colourful and that's fun. But it's really a conversation opener in terms of using those artifacts as well. So how are you working online?

Leah Heiss:

Well, we're trying to think about... Designers love to think about affordances and I started thinking about, "What are the affordances of the tactile interaction?" And a lot of my writing is about that tactile co-design methods to engage participation in complex problem spaces, particularly healthcare spaces. And so it's like, "What can you bring from the physical into the virtual? And what are the affordances of that space?" And the affordances are that you can have distributed groups of people involved. So most recently we adapted our toolkit to help the World Health Organization bring together people across eight countries, which is super exciting. And it can never be as tactile and moveable and as playful. But we are getting there. We're creating... It's all in there though, a lot of it's actually about colour and illustration. What do you bring to it to make it look like a beautiful, interesting, immersive space in order to contribute your ideas?

And we've done some pretty interesting network mapping in the Alfred Hospital project with the eating disorders. How do you map someone's network of care? Who's caring for them? Who's closer to them? Who's further away? And some of that stuff works, but you also need to acknowledge in the online, that there's some things you can't do. And a lot of it comes back to the facilitator creating a sense of empathy and connection within the room, making sure that everyone's okay and everyone's being cared for and heard and able to contribute to the conversation. So it's a bit of a balance. But the affordance of online is that we can now bring together people across countries. We're doing some exciting work with Turning Point to help them co-design a new integrated care system, which is statewide, for integrated care of addiction and mental health. And so we're really excited to be able to bring people together no matter where they are, if they're in Bendigo or Ballarat or up on the border or Cann River, they can attend as long as they have an internet connection. And we'll create a space for them to contribute to that conversation.

Keely Macarow:

Yeah, no, it's really great in that way. I think that people are obviously missing a lot of in-person work. Of course that's going on to a degree. But the online has been great in terms of being inclusive because there's so many people now that can come into all these events and meetings that may not have been able to in the past. You're talking about people in different countries, but even in terms of regional Victoria. I'm living in Castlemaine now. So you can just obviously do things. But I think also that's really important for people with varying abilities also to have... It's so much more inclusive for people for lots of different reasons. I think we've been leaving people out of things because we haven't been attending to this in many respects.

I understand not you and I necessarily, but everyone. So I think it's really important and it's good to hear what you're doing. But we also spent many years working together on emergency medicine. Emergency jewellery. Emergency medicine, but we're emergency medicine people too. So do you remember when I first came to you because I had those allergies and we ended up working on our first project together? I had allergies to a whole load of medications. Well, I've got more allergies since then. So maybe you need to make another jewellery piece because I've actually got more allergies.

Leah Heiss:

And that was a funny story because, hopefully we'll put some links in the show notes, the emergency jewellery was about jewellery to identify allergies and identity in times of medical crisis. And we did some pretty interesting... I like this story. It's funny. We did some, I guess what you might think of as, passive technology. So a bracelet that has Keely's name and her allergies written on it similar to but more prettier than a device that the regular emergency jewellery.

Keely Macarow:

SOS jewellery, yeah.

Leah Heiss:

SOS jewellery. But we also did some investigation into micro projection devices. Do you remember?

Keely Macarow:

Oh yeah, yeah.

Leah Heiss:

Micro projection devices. And so we were looking at it. We worked with Paul Beckett, who's a engineer, and we were looking at this really complex way of doing micro projection. And the idea of a micro projection would be that you'd press your... I'm touching my wrist at the moment. But you'd project the information on the wall of the ambulance or on the road. And so we were looking at complex ways, and then I went to the post office and there was a Minnie Mouse watch that had a microfiche projector in it. And we worked out that if you just hacked it out, that was the technology required for our high-tech jewellery.

Keely Macarow:

Let's just think that if it was rolled out, we could get the Minnie Mouse production team factory to be rolling out those jewellery pieces for us. We didn't think about that at the time, but maybe we should have.

Leah Heiss:

Because you just changed the... You'd keep the Minnie Mouse watch, which would be useful for the child, and you just changed the slide to say what their allergies are.

Keely Macarow:

Yeah. But we also saw it as being something that could have been adapted so that if someone went into emergency department with a paramedic that they could have actually connected to the jewellery piece and brought up patient history straight away. Things are a little bit different now in terms of our computerised systems. If people agreed to be into that system. But I think it was a great idea.

Leah Heiss:

But it highlights an interesting thing that's coming up in a lot of our work at the moment, which is around what's the future of distributed healthcare. And we've got a big strategic project called Future Hospital. And that's looking at... where the healthcare is being delivered is via this complex web of systems and services that are supported by hospitals, obviously, but also by palliative care devices, wearable devices, so that you can do a lot of that patient monitoring in the home. So it's the perfect time now for design to be involved in how that whole system is designed, well designed in creative practice, as opposed to it just being technology-led, which I think has been the problem in the past.

There's new devices that are added on to other new devices that are added on to systems and services. And there's no holistic human and planet focused approach to doing this. And that's something that we are very interested in is, "How do we actually design these things better for people?" Particularly so that, that wearable piece that we did in the past is the precursor to everything that's happening now with point of care devices and home monitoring.

Keely Macarow:

I think that's a great idea and I'd love to hear more about the idea of Future Hospital or even just thinking about it. I think it's fascinating to think of ideas that would help that. But more recently just in terms of having had COVID recently, because of the survey or questionnaire or whatever it was that I filled in when I first was registering COVID positive, I was triaged into having NURSE-ON-CALL texts every day where I had to fill in a questionnaire in terms of my symptoms and how I was feeling. And I thought it was good that they were doing that, but I missed the human factor. No one calls you. There is just no human intervention when you're going through something so serious like that. So it did actually make me think that it was great that they were doing that, that I was filling in this survey. At one point, I got a text saying, "Your symptoms sound like you're having a very unpleasant time. Get in touch if you need to."

But getting back to your point, the human focus is great. And just thinking about it in terms of what you're getting on your mobile. But how can we actually work with this so that we're working with these different devices or technologies but you're getting the warmth of a human being as well? Because I felt no care, no warmth with that. So I'm just giving that as an example, because I think that we still need that human capacity for warmth and for care.

Leah Heiss:

It's fascinating.

Keely Macarow:

It's not enough just for a device because it can actually make you feel a bit lonelier when you're feeling sick or isolated.

Leah Heiss:

That's a really good point because I think actually the COVID positive pathways is a success story of COVID in that they were able to use technologies to triage people and for them to stay in their homes and still be receiving updates and care and engagement. So when we say "success," I'm using inverted commas because, as you say, being a recipient of that care felt that you were quite uncared for. You were being checked in on, they were collecting the data to make sure that you were not going to die or get very, very unwell. But we could be using creative approaches to technology that are different, I suppose, that have more of a human capacity or a sense of care.

Keely Macarow:

That's right. I think that's really important. I didn't feel cared for. I felt like I was contributing to data. Because there's no instance where you could actually write your personal little story. It was all just, "tick the box." So it was about data collection entirely. That's what it was about rather than caring for people. Although, I do hope that some people doing that really do actually get the help that they need. But I think it is important because that isn't something that I've experienced before. I've called up NURSE-ON-CALL just in terms of confusion at home or for my son or something like that. But I haven't actually experienced it in that sort of way. So for the Future Hospital project, I think that's really important because obviously nursing is such a major aspect of hospitals now. And this idea of hospital in the home, which is what the pandemic is actually contributed to the idea of hospital in the home, it's really important.

So I guess in terms of Future Hospital, I'm not sure what your thinking is, but just coming to my mind, it's sort of like, "Well, what is that? Is that dispersed in terms of being in people's homes? Even in the workplace?" Yeah, the possibilities are interesting. But I think we've also always got to be careful with this sort of things that the health system needs the funding. For me, I'd hate to be part of something that starts dispersing funding away because there's all these other ways of doing things through technology because we still need that human factor and facilities that you can go into to receive that care. Care is-

Leah Heiss:

Yeah, care is a good one to think about because what we are thinking about is really focusing in on how care is delivered and received. Because that care is delivered in a systematic and appropriate way, data is generated. But that whole system is designed around the needs of the hospital, it's not designed around your needs. But there's some consideration of your needs.

Keely Macarow:

Of course.

Leah Heiss:

But in terms of your need to feel cared for, it's not taken into that scenario or that algorithm at all. But if we can shift focus to the lived experience of how care is received, if we are going to have a technology as part of other human solutions, we start to design that technology differently.

Keely Macarow:

Yeah. No, it's interesting. I wrote a manifesto of care recently where I was exploring care. It was a manifesto so there were demands and assertions and all of that. But it was really linking not only human health needs, but also in terms of planetary health and in terms of... It's quite far reaching in terms of how it's actually viewing what care actually means in terms of the planet, in terms of people, in terms of colonisation and decolonisation and how that all contributes to human health and wellbeing as well. So even in thinking in terms of Future Hospital and thinking the impact of the climate crisis on the planet, we need Future Hospital, dealing with that now because the planet's hurting and it's not well either. So I think it's a really interesting topic you've got there. Obviously you work in a project that has these certain parameters, you can only do so much. But it really is making me think about how we actually can think about Future Hospital, future health and what that actually means, especially in the conditions that we're living in at the moment and going into potentially.

Leah Heiss:

And the planetary health is really central to it. So we've been talking to Tony Capon, who heads up Monash Sustainable Development Institute. And particularly looking at the data, which is around in Australia 7% of CO2 emissions are from healthcare. In the UK it's 4% and in the US it's 10%. And this idea that climate change impacts on health and health impacts on climate change.

Keely Macarow:

Absolutely, yeah.

Leah Heiss:

And that actually, through thoughtful and creative-led ways of redesigning systems to eliminate waste and double up and unnecessary care, is a huge contributor to that, there's a lot of unhelpful care because our colleague Diana Egerton-Warburton, she's an emergency physician that we work with, she talks about there's a huge burden of unhelpful care. And that's what happens a lot when you're in the hospital because you are there. And we just say, "Oh, we'll just do all these tests." And the idea of calculation that's not needed, there's all these procedures that have on-costs, both human and economic and environmental, and if you can somehow start to shift or tweak the system so that it's working better for people and what people really need, then you can hopefully decrease some of that impact on climate. It's such a huge thing to do, but you've got to try.

Keely Macarow:

Yeah, no, that's great. Because I guess the thing is all the time about joining the dots in something like this. So if we are doing that, how is it contributing to this, in terms of that sort of thinking around that, which I think is important for many different things. Well, everything we do really.

Leah Heiss:

How do you make people conscious of their micro decisions and the impact of their millions of micro decisions on climate health? So for instance, in hospitals, as you know, there's a lot of environmental conditions that make you do things in a certain way, and there's also checklists and best practice. So you need to do it in a certain way. But there are moments in those decision trees that you can go left or right or you can say disposable versus washable, that whole cleanability aspect. And those questions, which is a decision tree thing as well, which is, "Why am I doing this procedure? Why am I doing this small thing? Why am I doing it this way or that way?" And so I think how can you make all of those micro decisions a little bit more, I don't know, perceptible to the people that are making them, because all of those micro decisions are adding up to quite extreme consequences.

Keely Macarow:

Well, you can see that in terms of just identifying the waste or the medical waste and you think about modern syringes, plastic. There's plastic in so many medical implements, just in terms of overuse of plastics. But yeah, no, it's enormous. I didn't realise the statistics on that in terms of... That's incredible.

Leah Heiss:

I know. It's terrifying, isn't it?

Keely Macarow:

It's really shocking. Yeah, the people who are working in that area must feel very alarmed about that and also be wondering about... I guess if you are working in that area and you have a commitment to reduction in emissions and planetary health as well as human health then it would be such a challenge in terms of, got to this position where we have all these wonderful implements and technologies but if a lot of them are contributing to medical waste in this way and to the climate crisis, what do we do about that? It's symptomatic of so many different things in terms of the way that we've been working for the last couple of hundred years post industrialisation. So not just obviously the health area, but really difficult for the health area because it's around care. So yeah, what a challenge.

Leah Heiss:

But a good challenge. And maybe that's where we get to in this conversation, design and creative practice provide us with the tools to manage complexity and to address these very complex challenges and not get bogged down so much by the complexity. I was thinking about that prototyping mindset that designers and artists are quite good at that. We can take one small piece and start to work on that and then that can be followed by another small piece and another small piece.

Keely Macarow:

Well, I think that's also because we work with our imagination. So even though we obviously have to take in evidence and work in an evidence-based environment and those conditions, but we still are bringing imagination to it. Imagination with things that aren't always being tested. Although we may test them as we did with the designing sound for health and wellbeing. I mean not that that project was completely original because obviously there's been lots of sound and music played to patients in hospitals. We just did it differently in terms of designing our own. But what I'm saying is, I think imagination here is a really defining factor. We give ourselves the permission to imagine things that maybe haven't been done before. Whereas, I guess the impulse in terms of working in health and science, except for some... I'm almost going to turn on myself now because then I think about the amazing people that have just forged ahead and known that if you did this or whatever that you'd be able to contribute to the eradication of smallpox. And so you test it on yourself.

Leah Heiss:

That's true.

Keely Macarow:

But that's a huge leap of imagination, which is I guess what we have and are working within the sector. And we've been lucky to also find the people in the health sector, the medical sector who have that imagination, which there are many as well. You could even say that maybe there's some artists and designers who lack imagination and don't always like continuing in a really new fashion and dream. What could be done in a way that hasn't been done before, I think, is what we've been attempting to do in these projects. It's always so great to be finding people, I think, that working your area of practice that are like that. But it's so special when you're finding them in areas such as in health and medicine. So reassuring because we have to turn to them to look after us as well. So it's so nice when we're finding people that have that imagination and creativity.

Leah Heiss:

That brings us to a pretty interesting point, and that's something that people often ask me is, "How do you find the projects?" And in your practice, I wonder if that works differently to me. How do you find the people and find the projects?

Keely Macarow:

Well, people have come to me. It's a bit of both. People have come to me, I've sought out other people. I sought you out on recommendation. And that was because I had a need. I had a need to get a piece of jewellery which I could actually have my allergies inscribed on it, which didn't end up working that way because we ended up working on projects together and then they ended up being exhibited in museums.

Leah Heiss:

We should really get around to doing that thing that-

Keely Macarow:

I'm just sort of wondering, especially if I got these extra allergies and I've just got this card in my wallet, which I should update with the new allergies. In fact, I had my wallet stolen once and someone found it and they found my allergy card and it had my phone number and they got in touch with me. I was just like, "How did you do that? How did you find me?" And it was all to do with that. But yeah, it's interesting. A lot of the projects I work with come from lived experience in some ways, the reason why I did my PhD about HIV and cancer is I'd lost friends due to HIV-related illnesses, and my mother and I had both been diagnosed with cancer, all this happened in one year. And so years later I thought, "I've got to write about this. I've got to do something about it." I wanted to find a book I hadn't read.

Of course Susan Sontag wrote about Illness and Its Metaphors and AIDS and Its Metaphors, and Illness and Its Metaphors is around cancer. AIDS and Its Metaphors was around HIV. But I was always interested in terms of artists and of course designers, in terms of the creative responses to these things and working on them. So I guess that's how I came to it. And then you just find things. I think for me through my lived experience, at times, projects sort of come from them. But there's just serendipity as well and just circumstances. I mean you can see because you've developed a set of amazing tools that can be adapted across a whole lot of different contexts. Whereas I think I've just mainly worked in specific areas for quite a while because of long-term partnerships, as in working in those emergency medicine settings because of St. Vincent's Hospital, and then with the Karolinska Institutet around elder care and end-of-life.

But I've also been doing teaching around this area as well, because we set up a Creative Care area in the School of Art. So that's been interesting to see students wanting to work in terms of creative responses to care or health and wellbeing. And mental health is a big thing that a lot of our students have been working in response to. We have a lot of research candidates in the School of Art that are working around trauma. So it's really interesting to see that work go on because many years ago there was little work going on in Australia and coursework students. So I think that's because of all the research that many of us have been doing and because of the need. People need to actually make creative responses to how they're living and what's going on with them.

But I think that also happens with our projects as well, Leah. Maybe just different experiences can always inform what you're thinking in terms of these devices and wearables and all of that as well. Especially if you're doing the co-design workshops with people, you're going to be hearing about people's experiences all the time. This gets down to the human experience in the end. So your own learning of other people.

Leah Heiss:

And that's something I've been thinking about quite a bit. I've spent about five years embedded in scientific and medical organisations in my career and I'm just starting to be embedded now in the Australian Nano Fabrication Facility, and that's very technological. It's the creation of sensors and working at the nano and the micro level. But what I'm interested in that work is what happens when you plant design and creative practice in scientific and medical organisations very early on in the process because designers and creative practitioners are very good at thinking about lived experience. And just that prompt, which is, "What happens if you think about the use of this technology in six to seven years time when it actually has a form? If you think about that now, will you make different decisions?" I'm talking about the engineers and the scientists who are at the bench, will they make different decisions around planetary considerations, but also human experience considerations?

I think of my work as kind of scaffolding. So we do the work in... There's a sort of longitudinal work, which is using tools in certain ways to engage with lived experience. And they might be six to 12 months projects. But there's also these scaffolding design capability around huge projects for years and years and years on end. And it's a move away from the designer or the practitioner as superstar, sole superstar, to being designer or creative practitioner as team player, part of really complex interdisciplinary teams. And you're there very much as a representative of lived experience, all the lived experience of patients and clinicians and family members. That's your role is to bring that view, particularly when you're working in teams like I do, which could be, I don't know, signal processing engineers and mechanical engineers and people that work at the nano scale. So they have different roles. But my role is actually to make sure that we're thinking about the lived experience of all of these different people and players in the long term. I don't know. I'm not sure where I'm going.

Keely Macarow:

No, I think it's great because I'd love to see people like you work in those organisations all the time. That's what I think that we need. And not just in the nano area or the health area, I think we need artists and designers in all areas asking these questions and being there. It's almost like you're giving the permission to open up that thinking, that creative thinking. I guess it's often design thinking, but that creative thinking, but also that thinking of just what it is to be human and that you don't have to be displacing your own human experience in terms of the work that you're doing, that you can actually be drawing upon it and you're going to actually bring something else... I guess we use the word authentic a lot. But really that's what it's going to be.

Leah Heiss:

I think we need them in banks.

Keely Macarow:

Oh yeah. Totally. Need some in government as well.

Leah Heiss:

We definitely need them in government.

Keely Macarow:

Yeah, banks.

Leah Heiss:

Yeah, I think it's humane thinking, actually I like that. I'm going to take that. Because I don't really like "human-centred design" or "design thinking," but "humane thinking" is good, because it talks to the human and the non-human.

Keely Macarow:

Yeah. Yeah, that's tricky, isn't it? Because with lots of people even the term human... And yeah, so many terms, it's sort of tricky in many respects. But yeah, it's bringing back that care and warmth and reminder of our common humanity. So I think terms actually are interesting now that we're getting terminology because that can take away from that or corporatise it, which is such a problem.

Leah Heiss:

Yeah because you do the six step design thinking course and then all of a sudden you're a designer. But the problem with those courses is that they just have one section for empathising, that's at the beginning.

Keely Macarow:

I'm intrigued about that, because you're saying six steps and I'm thinking, "Isn't there 10 steps for Alcoholics Anonymous and NA and all that sort of thing?" What are the six steps for Anonymous Designer?

Leah Heiss:

Oh there's five steps. Yeah, I'm very suspicious of them. It's the five step design thinking process, which is empathise, define, ideate, prototype and test. And I think it's absolutely ridiculous because you've got to empathise throughout the whole process.

Keely Macarow:

Oh, I rebel against things like that. There was a colleague that I worked with once who was very famous for co-design. I won't name them. And he'd get upset when I would challenge, "Why do we have to do that step now? Can't we do this instead? Can't we just work it out ourselves? That's the point of doing this project together." I couldn't figure it out. It made me rebel.

Leah Heiss:

Yeah. No, I'm with you. I'm with you. Because it's so rigid. Also you only engage with lived experience at the beginning, and then you go and do something, whatever you want, and then you come back and you implement your solution with the poor people that have to live with it.

Keely Macarow:

I don't know where it leaves the room to experiment or even to fail, which you need to go through those stages when you're working on things. Maybe not fail. But feel like you're a bit stuck to really work those things out. Doesn't make sense to me.

Leah Heiss:

Yeah, and that's what I think of it as these sort of continual loops of iteration and prototyping and testing with people. Reframing what you're doing, reprototyping, retesting, and just trying to keep people close to you throughout the whole process. If you were to keep people close to you throughout the process of designing that bot that was caring for you while you were at home with COVID here early on, "I don't feel cared for." Someone would say that. Would say, "Okay, how do we redesign this? Is it about language?"

Keely Macarow:

It's actually interesting that you brought up the iterative word because I think both of our practices are like that in many respects. It's certainly you're working on something and then it keeps informing and building and building and building. So it's almost like this long project in some respects. A long body of work, which projects are all sort of connected in many respects. I have to say that the ear piece was beautiful. I think that we left out some words, but I do want to go back to that. That was such a beautiful, beautiful object or artifact, Leah. Beautiful shell.

Leah Heiss:

It was really lovely, I know. Yeah, it had a funny life. It was out in the world for a couple of years and the company was taken over and a bunch of stuff happened. So the technology as a technology isn't being used. And that's an interesting one if we just talk about the idea of failure and reframing failure. Because if the way that I assessed my value and my worth was entirely on commercialised products, then I would've failed. But because I look at that project as, I don't know, changing hearts and minds rather than changing medical technology, it's like if someone said... Like with our necklace. "Why can't a necklace detect a heart attack?" And they're saying with the hearing aid, "Why can't a hearing aid be beautiful?" Actually, those technologies still have a life because they still travel the world in exhibitions and people are still asking those questions. "Hang on. Do I have to put up with this crap? Can't I have something fantastic?"

Keely Macarow:

And I think it allows the people that we work with to ask those questions too. So what I always thought with the colleagues I worked with at St. Vincent's Hospital, I never had the evidence of this, but I think they started asking different questions that they wouldn't have been asking if they hadn't have worked on those projects with us. And I think that's really important, because if you look at learnt behavior and role modeling, then that's going to continue with people that they're going to interact with and work with as well. So you're right. Because just the sound compositions that we worked on with St. Vincent's Hospital... We were hoping and did a piece of work in terms of recommending the technologies et cetera that they use in emergency department to use the compositions to alleviate people's stress and anxiety. The whole problem there was that when you go into a busy department, such as an emergency department, the medical staff are swept off their feet because there's not enough of them and people are really needy and they're worried and they're scared or they just need help.

So the idea was obviously relieving stress and anxiety, but also preventing people unneedlessly seeking the medical attention while they're waiting. Because people are so busy and overwhelmed there, all the staff. But they didn't take it up. So I was upset about that for a long time. But not so now, because obviously technology is superseded and there's new staff in workplaces. But I think it's this idea of iteration and what we're doing and how it affects other people. And this is why we can see so many other people working in these areas now because it just starts opening up. I think that's really important in the end. In some effects, maybe we're doing some research training with people, even though they might not think about it at the time, in terms of just this opening in terms of asking these different questions, "Can things be done differently? What is this environment we're working in?"

At the hospital, really what we discovered was that it's the whole design of the actual hospital space that needed to be designed, thinking about sound, the sonic environment and how that actually affects both staff and patients there. And not just a cosmetic intervention as a sound composition, as good as it is. I'm not downgrading our work because it was good. But just saying it opened up these other questions which I think in the end are really, really important, if not more important. Something which requires larger change over a period of time. But I guess that takes time too in terms of you work on projects and over a period of time maybe you start realising what the effects actually are. But we're not writing about that so much, which maybe we need to be expressing that more as well.

Leah Heiss:

I think so. I think maybe this is a good point for us to close our conversation on. But the idea of the impact of design and creative practice or creative practice and design on long-term culture change and culture shift within organisations and with the recipients of our work, but also our collaborators. And I've noticed that too in my being embedded over so many years. Particularly in the 2007, 2008, I was embedded in Nanotechnology Victoria for a year and a half, and we designed some great things, the diabetes jewellery pieces and a bunch of other stuff. But the really long-term thing was around the way that the nanotechnologists were able to communicate their value to non-scientific audiences. They learned from having to communicate with me what innovation is and how do things actually work in a non-scientific way. And that's just practice and practice over time and thinking about lived experience, which wasn't something that was coming naturally prior to my being there. So we can have long-term culture change impacts in a whole range of ways. And I think that's a really positive thing.

Keely Macarow:

Yeah, I think that's great. That's a big project maybe for someone else or maybe not. No, I think that's the most positive and productive way to look at it, which I think is great. It's a great achievement.

Leah Heiss:

I'm going to draw us to a close now because I know otherwise we'll just talk forever because this has been excellent. I've loved this conversation.

Keely Macarow:

I've loved this conversation too. It's been really great. We had lots of great conversations working together but this is really nice, some years later, just in terms of recapping these things and thinking how we're both thinking, which is just not too different.