Meet the Solutionists, with Mark Scott

Your phone knows how many steps you’ve taken today, how long you’ve been outside, how much social interaction you’ve had... It can be scary, but what if it could be the path to a better way of managing mental health?

Rates of anxiety and depression continue to rise, but even if we could double the workforce of mental health professionals, we still wouldn’t keep up. Dr Frank Iorfino says it’s time to use big data to our own advantage. He calls it ‘ambient mental health care’ - it’s a way of leveraging all that data collection already happening in the background so we can better understand ourselves and our mental health. 

Frank explains why the current approach to mental health care needs to change, and outlines how ambient mental health care is already being used today. 

Mark Scott  00:01

This podcast is recorded at the University of Sydney's Camperdown campus on the land of the Gadigal people of the Eora Nation. They've been discovering and sharing knowledge here for 10s of 1000s of years. I pay my respects to elders, past and present, and extend that respect to all Aboriginal and Torres Strait Islander people. The modern world runs on data. Social media algorithms deliver you content that seems tailor-made for you. These apps that seem to know when you're hungry, you're tired, or feeling lonely. Every time you buy something online, the retailer seems to want to know everything about you. The smartphone in your pocket knows exactly how many times you've touched it today, how many steps you've taken, your exact location. Data about every facet of our lives has been collected constantly, and often without us even knowing. It can be scary. But what if we could use it to our advantage? I'm Mark Scott. This is The Solutionists. Dr. Frank Iorfino is a researcher at the University of Sydney's Brain and Mind Centre, and he wants to put the power of big data back in the hands of the consumers. In particular, he wants to empower people to better understand and support their own mental health, with digital technology. Frank, why does the way we manage mental health right now need to change?

Frank Iorfino  01:43

It matters so much at the moment because we really have two problems at the same time. We have a huge demand for mental health care. Many young people, in particular, are affected. About one in four young people will be affected by a mental illness currently, and it affects a billion people worldwide, and unfortunately, suicide is the leading cause of death among young people in Australia today. So, we have huge needs, and, and mental illness among young people in particular have huge consequences going into adulthood. You know, it affects their earning potential, it affects their social relationships. So, it can really have long-term impacts and burden on people's lives, and so we really need to try and address this. But unfortunately, the other problem is, we're still doing things the same way we were, you know, 20 years ago, we, we're going to the same solutions that we were in the past. You know, more clinics and more services and more clinicians. So we need to address that problem as well. Is how can we reach people in a more effective way earlier?

Mark Scott  02:45

So we're documenting a dramatic increase in incidences of mental health. Suppose some people would ask the question, are we really worse off, or are we just better at being aware of it, articulating it, putting a language around the mental experience of people?

Frank Iorfino  03:02

Yeah. There's certainly research to show, kind of look at things from both the perspectives there. So we, we've definitely seen huge increase in awareness campaigns, and people's literacy is much better than it was in the past. But the world is much more complicated than we are, than we, we once had. You know, social media and other things are influencing people. People experiencing kind of financial hardship and other social determinants seem to be increasing, kind of mental distress among young people in particular. So I do think we are seeing real changes in the increase of mental disorders, as well as better awareness.

Mark Scott  03:39

But the model to support people with mental illness was created in a time where there was far lower levels of identification.

Frank Iorfino  03:48

That's right. That's right. And we still don't have a blood test. We don't have a blood test or a brain scan, an easy way to just make a clear diagnosis. So that's one problem. And the other thing is, mental illness is very complex, so depression in one person can look very different in another person. So someone might experience a set of symptoms that is completely different from another person with depression, and that complicates how to get people effective treatment as soon as possible. And so, the combination of the complexity, but also not having the right tools. We don't have blood tests and those kinds of things to identify things effectively. So those things really complicate the situation.

Mark Scott  04:28

So why isn't the answer just to simply increase the number of mental health professionals, to meet this increasing demand?

Frank Iorfino  04:36

Well, the truth is, you know, we've done some work with modelling and looking at the changes in those things, like you, you know, increasing resources in the system, and unfortunately, we could double or triple it, and we still won't be able to meet the demand that we're seeing in the population. So, we need to think of different ways to use the resources that we have to meet that demand.

Mark Scott  04:58

So, give us an insight in the current state of play. If I was to go and see my GP because I suspected that I might be experiencing depression, how does the GP consider my case, and, and what are the options that are put before me?

Frank Iorfino  05:13

Yeah, so a typical journey might look like that. You present to a GP, and you express some symptoms that you might be experiencing, and you might get a mental health care plan, which then gets you access to a psychologist for up to 10 sessions, let's say, and you know you might present once a week or once every few weeks, and you do that kind of therapy. Sometimes medication might be involved in some circumstances And so it tends to be quite episodic, though, and you've got those one hour appointments spread out over time, but it was still a lot of trial and error. So, although we have many effective treatments in mental health, we have behavioural activation, we have lifestyle changes, we have medications, we have psychological therapy. Those things are effective, but trying to figure out what works for you and why is really challenging, and so,

Mark Scott  06:04

So that could take up a lot of those 10,

Frank Iorfino  06:07

Exactly.

Mark Scott  06:08

Meetings to just kind of work out what works for me. What happens on the other side of the 10?

Frank Iorfino  06:12

Yeah, well. So yeah, you're completely right. So it's a lot of trial and error. So you could use up many of that, much of that time to figure out what works for you, and then after that, you know you may have to out of pocket expenses to try and pay for that to continue beyond the 10. So you can obviously do that privately or, or at your own cost or other some, some other kind of arrangement. So we are using a lot of trial and error to try and get people the right care at the right time.

Mark Scott  06:39

So if I get that right, you would still get some financial support if you're going back and seeing your GP around these issues. But if you were dealing with a psychologist, let alone a psychiatrist, that's when it's really going to have a hip pocket impact.

Frank Iorfino  06:55

Precisely, yeah. Those things can get quite expensive.

Mark Scott  06:58

And the prevalence of mental health issues with young people, in particular, as you look at the data, is that where you really see the impact is emerging now?

Frank Iorfino  07:09

Yeah. So our research, in particular, focuses on young people, mainly because most disorders, so about 75% of disorders, emerge before the age of 25. So it is a period where we see the highest incidence and, and prevalence of disorders, and as I mentioned earlier, we were looking for early intervention. So trying to change the course of people's lives. Because a disorder or an illness during that time can take them out of work, can take them out of education, can you know have impacts on their social relationships, and those things have long-term consequences. So we focus on young people because of that's when most disorders emerge, and because it's the time when we can have the biggest impact. When someone's been living with an illness for many, many years, it can become more complicated and a much harder trajectory for getting them well and staying well if we intervene too late.

Mark Scott  08:01

Strikes me very few defenders of the status quo as far as the provision of mental health treatment, despite breakthroughs that have been evidence around the use of drugs and other treatments over recent decades. You want to move the system to something you're calling ambient mental health care. What does that mean?

Frank Iorfino  08:21

Yeah, so if you think about you know the data that's being collected on us all the time. So you know your phones or people have wearables, many of these devices are learning about us over time. And so things like your activity and your movement and your sleep and these many factors which are implicated and involved in our mental health. And so when I use the term ambient, I mean to describe something about a system of care that is in the background, but always learning about you and there when you need it. So it's there, running, trying to learn about your own health patterns over time, and providing you with the care and interventions at the right time when you need them most.

Mark Scott  09:06

You talked earlier about part of the challenge here being, that there aren't simple diagnostic tests like blood tests, and, and I've reflected in the past on the difference you now see in something like cancer treatment. Whereas you know for a long period of time, there was almost like a standard generic chemotherapy treatment. But now with immunotherapy, it's very personalised to attack your tumours in your body very specifically and very personally. You're saying that when it comes to mental health treatment, we don't even have a blood test. So how, how is something as simple as a phone or a watch that's monitoring, you know, your number of steps and number of sleeps. How is something as simple as that going to be useful in something as complicated as mental health?

Frank Iorfino  09:53

Well, you've picked up on the key point, which is personalisation. So that is really what our work is trying to push towards, is highly personalised care, where we try and understand your patterns over time, and importantly, the relationship between a person's behaviour. So, the relationship between someone's sleep and their mood over time, or the relationship between their kind of daily activities and social interactions and their mood and their mental health. So, by tracking these things using digital technologies, using devices over time, we can learn really unique patterns that are specific to you. So, and, and we're doing a lot of work in the data science realm as well to learn and use causal inference to try and understand the relationship between two variables. So we can understand, okay, when we improve your sleep, your mood tends to be better. Or when you have high, you have many social interactions, you tend to feel more anxious, or you might feel better. So these relationships are highly individual for different people, and they have also explanations that go to a person's biology and their other social influences. So putting all that information together is really complex, but it gets us to personalisation, and we can only do that if we're doing the right levels of monitoring and tracking, and using tools to understand and analyse those patterns.

Tara  11:18

I'm Tara. I'm a Lived Experience Researcher at the Brain and Mind Centre, which means that I have lived with experience of managing mental health conditions and also seeking support for that. So my first interaction with the mental health system were mostly through school. So for me, that looked like meeting with my school counsellor during school hours, maybe once a fortnight. And at the time, that was really helpful for me, and that kind of met me where I was. Definitely, when I started moving out of those organisations where things were a lot more coordinated, and I, for example, started to kind of manage my own support team by seeing different professionals, it became really difficult to be able to coordinate care between them and to have that open communication that I had before. So that meant that a lot of information about my care was managed by me. So I had to make sure that I was tracking what was happening in my life, making sure to bring the right information to the right people. So I did use some mental health apps like mood trackers and things like that because realistically, when you're, for example, having an appointment with a psychiatrist and you're having those once every three months, it's really easy to forget what's happened in those three months, just because it's a long period of time. So having that information on an app and being able to look back over the last three months and see, you know, what you've been feeling, how much you've been going out. Looking at your sleep, looking at your social connections, that can be really helpful to be able to bring to a professional.

Mark Scott  12:51

So let's throw forward 10 years. If what you are talking about now became far more commonplace, and I go and see a doctor in 10 years' time and indicate that I'm concerned that I might be experiencing symptoms of depression. What could be different?

Frank Iorfino  13:07

Yeah. So what I see is the future is, systems and tools where we have high levels of monitoring about a person's, the key, the key factors that are involved in their mental health, and so that, that information is being collected in a way that's not burdensome on a person, doesn't require them to do too much, but it is quietly learning about them, and it starts to learn what works for you. So if someone tries meditation, or they try psychotherapy, or they try behaviour activation, you know that, those are signals. Whether those things work or not are signals about what works for an individual. And so a system that is continually learning over time, that then means in the future, if someone starts to have an early warning sign. So let's say an early warning sign might be you haven't left the house for many days, you haven't received any or sent any text messages to loved ones. That could be an early warning sign that someone's withdrawing, they're staying home, they might be feeling depressed. A system, an ambient mental health system, might be able to reach out at that exact moment and say, "Hey, you know, are you doing okay?” You know, “you've tended to feel better when you've called your mum or gone for a walk with a friend”. So those kinds of things about reaching out when you see the early warning signs that things could be going off the rails.

Mark Scott  14:26

So, so you're saying that this, almost like this passive ambient system, this monitoring system, might be able to be an early warning system for the progression of a disease. Why do you think that's significant? Why would that be a significant change in benefit?

Frank Iorfino  14:43

So I think it's a major change from what we have now, which tends to be episodic. So we have very sort of specific cross-sectional snapshots in time. You know, a clinician sees you one-on-one one week, then they see you again in another week or another few weeks, and so we're getting these very sort of brief snapshots over time, and you're trying to piece together a really complicated thing, a complicated picture about what's going on for that person. So, what, what we're describing here is something that's a much more continuous view of someone's patterns, and we're not removing the clinician. The clinician's still there. It's just now that they had, they have so much more information to make better decisions about what might be going on for that person, and how to effectively treat them over time.

Mark Scott  15:27

And, and I'm interested. I'm reflecting on the experience I have with my Whoop, which I'm wearing today. Where my app, you know, is giving me feedback on number of steps I've had and you know, how I've slept and what my HRV is today. And I suppose they're looking at my data, and they're comparing it to, they're looking at trend lines over time. But they're comparing it to a broader data set that they've got as well. Is that the way this would work too? So you're not just capturing it on your phone, but in a way it's being kind of uploaded and analysed, and then you're being fed back suggestions and insights.

Frank Iorfino  16:00

I actually think we're doing a little bit of the reverse in, in mental health. Where a lot of that is you are being compared to a population, a large population. We don't have the data yet in this area, particularly around the relationship with things like actual mood or actual disorders. So at the moment, we're actually more interested in your own individual patterns and really detecting changes.

Mark Scott  16:23

Do you think that will come? By the way, I mean, is it that the data set is too small, or is there that Frank is so different to Mark that it's got to be bespoke for everyone?

Frank Iorfino  16:36

I think we will get to a stage where the data sets will be good enough and large enough to have some level of information coming in from population level. They will be useful. So population level data feeding into the models that we're using will be useful, but there will always be the element of your own individual change over time. And so, one person's normal pattern of sleep or activity or social interactions will be different from another's, and that's fine. And that, it's about the relative change for you as a person and as individual. But I think as the data gets better over time, there will be things to learn, and that's what we're looking to learn here. Is there will be things that are fairly common for people with certain types of depression, or with bipolar disorder, or with anxiety. And those things we can learn at a population level. And we already are. Some data shows that people with depression tend to leave the house fewer times a day, lower levels of activity. So there are already signals that we're learning from devices like watches and smartphones and things like that.

Mark Scott  17:52

We're, we’re always pretty sensitive about health data, and and it feels very private, very personal. What's the challenge of implementing a system like this when we're really, kind of entrusting more data to a device, let alone the cloud, and whether, in fact, a patient will be comfortable with that kind of interaction?

Frank Iorfino  18:16

Yeah, this is the one that maybe keeps me up at night sometimes. Because it can sound a lot like surveillance, and this level of monitoring is like okay, we're watching people, and it is very scary. And I, I do worry about that. And so I think it does need really proper, careful design and regulation and governance so that these things aren't misused. And I do think we're going to have to move towards a future where people have much more clear ownership over their own data, so it isn't sitting in clouds or in you know with certain companies. But how do we move towards a future where we have much more clear data ownership and control ourselves? I think that must be part of the mix, because it is a really scary thing to think of if we are collecting all this data over time, what it could be used for. And the other thing is though, the other, there is another perspective too, where you know some of this data is meaning like you know, who cares how many how many steps Mark took yesterday, or, or Frank took yesterday. It's not really that, but there are other very personal levels of information that would be scary to be shared.

Mark Scott  19:25

Just, just the reverse side of this. I mean, I mean, a lot of the work that's now happening around AI and concerns around AI give rise to a fact of you know, is it healthy for us to be engaging with technology in a certain sort of way? That that your friend or your counsellor, your advisor turns out to be a series of algorithms on the cloud. You know, a lot of people would say, "Well, well, that's not healthy. We're losing the human interaction”. You'd have thought there's almost no part of medicine that is more interpersonal than the treatment of people with mental health issues. What are we losing if we go down this road?

Frank Iorfino  20:06

I hope not a lot. I, I hope we actually gain many more things in the, in the realm of interpersonal connection. Actually, the choice of the word ambient is actually on purpose, because it, it describes something in the background. So it doesn't mean someone should be on their phone all the, all day every day or watching devices. It's about having it in the background so that we can make you know human interactions better. And so this kind of system where we're trying to develop and move towards is one that enhances those existing interactions. It's not always in your face. It's not just constantly on the phone, talking to an AI. And in fact, I hope we get to a system that says, "Hey, you've been using your device too much”.

Mark Scott  20:49

Yep,

Frank Iorfino  20:50

Go out and you know, have a swim.

Mark Scott  20:52

Put the phone down, Frank.

Frank Iorfino  20:53

Put the, put the phone down. That's right. So,

Mark Scott  20:55

And, and I mean that does strike me as being an interesting challenge on this. What is signal? What is noise? And, and I think we've all run into people who are quite obsessed. That you know, 

Frank Iorfino  21:05

Yeah, 

Mark Scott  21:06

Where are you going now? I'm only at 9400 steps. I've got to get my 10,000 up today, 

Frank Iorfino  21:11

Yeah.

Mark Scott  21:11

Kind of thing. The extent to which you'll need to be able to monitor and manage the risk of too much obsession around what the data is telling.

Frank Iorfino  21:20

Totally. And in our world, mental health, it's not about a, it really isn't about a daily target. We're looking at longer-term patterns. And meaningful shifts related to real kinds of, you know, daily mood goes up and down all the time for a range of reasons. That's not what we're kind of interested in here. We're interested in long periods of depression or anxiety or other kinds of mood disorders. So it is the longer-term patterns. So hopefully that means we're not obsessed with a daily score or a daily target. It is about just having the systems monitor these longer-term patterns, and then what are the relationships with meaningful changes in a person's mood and their mental health.

Tara  22:08

Some of the things that I work on are making sure our research is approachable to young people. A lot of the time, it looks like publishing some of our research on social media in a way that's digestible and approachable, so that young people will want to engage with research. Because a lot of the times, I feel like research can seem very out of reach for people. You know, they don't know how to maybe be involved with research or how to understand research outputs. And if our research isn't benefiting the people who it's for, then you know, why are we doing research? Kind of thing. I think the understanding of mental health today is definitely changing, and I think it's changing for the better. I think there's not only more awareness but less stigma about experiencing mental health challenges and reaching out for mental health support. And you know, I'm not in school anymore, but I do have friends and family members who are still at school, and hearing about their experiences is, they sound really positive to me. So I'm really glad about that.

Mark Scott  23:14

At the beginning, we talked about the prevalence of mental health issues, and, and I just cannot think of anyone who's either their own experience or a close loved one or a close friend that haven't been in the orbit of mental illness. And in fact, every now and again, kind of, I can be quite startled by the number of people I've known who've taken their own life. People I've worked with, colleagues, friends, neighbours. It's kind of everywhere. What, what got you on the journey to study, engage, and, and kind of push research into mental health?

Frank Iorfino  23:51

I mean, you're right. I have similar kinds of experiences. Many people in my own life have had similar concerns and problems, and, and have all been affected by it. My, my own personal thing is, I've always been interested in people and, and what, what makes us, what drives us, and our individuality. And so I was drawn to psychology early on, from just out of school, just to understand the human brain and, and, and the mind and what makes us who we are. And so that is what set me on the journey down sort of psychology and mental health. And then, as you move into the area, all of those personal stories you just touched on, you learn about all that, and it's hard to ignore the problem. And then wanting, I've always been a solutionist in terms of trying to make a difference, and so I was immediately drawn to like, okay, here is a clear problem that has a huge impact on people, and I’m hopefully can make a difference in that area.

Mark Scott  24:51

And are you confident that your research is leading to insights that will make a difference?

Frank Iorfino  24:57

I am certain of it. Which you know, not certain in the sense of blind to the problems that we're facing, you know, there are challenges to overcome in our research, no doubt. But I, I'm certain of that future that we kind of described, where we, we need to move to something much more continuous and comprehensive, using digital technologies. And I, I really believe it can make a difference to mental health care in Australia.

Mark Scott  25:28

That's Dr. Frank Iorfino from the University of Sydney's Brain and Mind Centre. If you want to learn more about mental health and the little interventions that can make a huge difference, you'll enjoy our episode about light and sleep with Dr. Jacob Crouse.

Jacob Crouse  25:46

We live in a light polluted society, so not only do we get low daylight exposure, light's also way too bright at night time. That confuses our clock. So I think really hundreds of millions of people around the world are affected by these things, in subtle ways sometimes. But these, these disturbances might also push people over thresholds to developing illness.

Mark Scott  26:06

You can listen to that episode of The Solutionists right now, and make sure you're following the show so you don't miss an episode. The Solutionists is a podcast from the University of Sydney, produced by Deadset Studios.

The Solutionists is a podcast from the University of Sydney, produced by Deadset Studios. Keep up to date with The Solutionists by following @sydney_uni on Facebook and Instagram, and @sydney.edu.au on Bluesky.

This episode was produced by Liam Riordan with sound design by Jeremy Wilmot. Supervising producer is Sarah Dabro. Executive editors are Kellie Riordan, Sladjana Rstic, and Mark Scott. Strategist is Ann Chesterman.

This podcast was recorded on the land of the Gadigal people of the Eora nation. For thousands of years, across innumerable generations, knowledge has been taught, shared and exchanged here. We pay respect to elders past and present and extend that respect to all Aboriginal and Torres Strait Islander people.