GERRY SCULLION: Hello and welcome to another episode of ‘This is HCD’. My name is Gerry Scullion and I’m a human centred design practitioner now based in Dublin, Ireland. As some of you will probably know, up until recently I was based in Sydney and in my last few months in my time in Australia I caught up with my next guest, Faruk Avdi, right next to the famous Bondi Beach.
In this episode, we discuss what role, if any, can technology play in support of people suffering from mental health. But before we jump in I want to do two things; the first is I want to acknowledge the Gadigal people of the Eora nation as the traditional custodians of the land where we met whilst recording and pay respect to their elders both past and present.
The second is I wanted to give you a bit of context on the topic in this episode. So I’ll start by telling you a little bit about bipolar disorder, once called manic depression. Bipolar disorder is a medical condition which affects the brain and in many cases causes extreme mood changes. Someone with this disorder can be very high and overexcited or very low and depressed often with periods of normal moods in between. Now up to 2 percent of people or 460,000 adults in Australia experience, the symptoms of bipolar disorder and one of those symptoms is mania which can be experienced as euphoric by some but also highly distressing for others, leading at times to devastating consequences. So destructive mania can be difficult to contain once in full flight and much emphasis is therefore put in preventing it from occurring when signs or signals emerge.
Now Faruk worked for SANE, Australia, which is a mental health organisation working to help people living with complex mental illnesses. SANE engaged with Faruk to design the delivery of a service that seeks to help people identify the potential onset of mania and in the hope that technology may provide new means of helping people stay safe. This is a fantastic episode, so let’s jump straight in.
Faruk thank you so much for spending some time with us and welcome to ‘This is HCD’ podcast.
FARUK AVDI: Thank you, Gerry. My great pleasure to be here.
GERRY SCULLION: Faruk tell us a little bit about yourself and how you got into design.
FARUK AVDI: I got into design around 1998 when the Web was just really starting to intrude into people’s imaginations in a strong way. I know that’s not true for the technologists and others who were working on it at the time but in the popular imagination, it was still very young at that point in time. So I was one of the later comers there but I started writing about technology, to begin with. I’d been working as a kind of journalist come media campaigner for not-for-profits for several years prior to that point in time and the Web seemed a great way to communicate and to connect with people around the world.
So I went off and I was freelancing as a writer for a year, writing about technology for a magazine called Desktop magazine and then that gave me the kind of momentum, I guess, along with some study to go for a role with a software development company and work on what they called ‘online simulations’, training simulations for business purposes which were multi-branching, multi-linear kinds of stories.
GERRY SCULLION: So today we were going to be discussing your role in SANE, Australia. We’re going to be discussing how can technology assist people living with mental illness and it’s such an important topic. So tell us a little bit about your work that you’re doing with SANE at the moment.
FARUK AVDI: The work I’m currently doing with SANE is on the SANE bipolar app on the non-clinical trial of that particular app. That’s one of three or four major projects that I’ve done with SANE over the last several years so this is the last one. The earliest ones included the online community’s SANE forums, as well as a re-design of their website and also a design development of a native app for their online communities as well.
GERRY SCULLION: So as a disclaimer, myself and Faruk have actually done some work together over the years and I know from reading online it seems to be that mental health problems are increasing; have they always been there or are we just getting better at detection? What do you think?
FARUK AVDI: I’m not so sure that mental health of the community is deteriorating per se. I think that the picture is varied and from what I can tell anyway when I look at different articles and online et cetera you know sometimes it seems the statistics are going in the right way, sometimes not. But either way, there’s a substantial issue in the community; you know one in five people in Australia are said to experience some kind of serious form of mental illness or distress in their lifetime at least once and at any given time there are literally millions of people who are living with something that’s quite a burden for them and that they could certainly use some help with.
In terms of the reliability of those sorts of statistics that we see and even diagnoses I guess that one thing that I’ve noticed is that the whole topic of modern mental health or mental health care seems to be pretty young compared to physical health, the history of physical health goes back a very long way in terms of the science and the learning associated with human physical health. But mental health as a topic really only seems to be like in a way you know very young, 120, 150 years old, you know somewhere around the time of Freud, give or take 30 or 40 years. And so that means that a lot of the understandings I think are crude by comparison to our detailed knowledge of material matters you know combined with the complexity of science not really being able to dig into what the mind actually is because it’s immaterial. So statistics and understanding bounce about quite a lot in terms of what constitutes mental health, what doesn’t, what constitutes a particular diagnosis, what doesn’t and how everyone in the world is actually faring against these sorts of things.
GERRY SCULLION: You mentioned earlier before we started recording about the bipolar app, where that came from and where it originated and tell us about the product itself.
FARUK AVDI: Well it’s hugely exciting product, Gerry. It came from basically a Greenfields brief from the executive of the organisation to say look we need to help people with bipolar disorder you know that’s what we’d like to do, amongst the other people that SANE helps, got some money that’s available, a small amount of money, what can you do with it? And so it was that broad.
GERRY SCULLION: Yeah, it’s a nice email to get.
FARUK AVDI: Oh it was fantastic and so, of course, the first thing I did was going out and I looked at, this was back in what 2015 I think, looked at what else was out there, you know like did as much research as I could, found out as much as I could about similar services, similar research papers, university efforts et cetera. Found a few that were doing some interesting things but in the process also took a greater, deeper dive into mobile technologies themselves and realised that I needed some help and so that was a great opportunity to build a partnership with a fellow called Dr Rod Farmer who was then the general manager of Isobar, Sydney.
GERRY SCULLION: I think he’s at McKinsey’s now.
FARUK AVDI: Yeah he’s now at McKinsey. So Rod is a leading expert in Australia in design and technology when it comes to mobile services and a range of other things. So Rod and I had worked together previously so I thought yeah well see if Rod’s interested in kicking this one around and he was. And so that was great so I had a sort of a pro bono design buddy to work with just in that early kind of research phase. And then there was another person that came involved and I can’t retain them because they wish to remain anonymous.
GERRY SCULLION: Okay that’s fine.
FARUK AVDI: But this person also has design expertise and they live with bipolar disorder. So bringing that person on board was huge because that person was able to bring a lot of first-hand personal insight.
GERRY SCULLION: Massive.
FARUK AVDI: Massive. And plus they were design literate as well so…
GERRY SCULLION: Yeah they can speak the language.
FARUK AVDI: Yeah so the three of us started to look at the terrain. I meanwhile developed another partnership as well. I reached out to one of SANE’s clinical advisory group, Professor Philip Mitchell and he’s the head of psychiatry at the University of New South Wales here in Sydney and Phil was also available to kindly help with pointing us towards some very solid literature about bipolar and throughout the project in terms of validating certain ideas that we may have had, certain hunches and helping us refine various concepts.
So the three of us looked at mobile technologies, looked at bipolar disorder itself, various symptoms, and started to try and, looked at the highest kind of impact areas, looked at the areas in terms of bipolar disorder that had the greatest evidentiary basis below them.
GERRY SCULLION: Was that data kept within SANE?
FARUK AVDI: No that data actually I encountered at a conference that I attended in Sydney. Forgive me, I can’t remember the name
GERRY SCULLION: I’ll drop it into the show notes.
FARUK AVDI: Yeah you know that’s right but it was at Sydney University and it was I think late in 2016 and there was a weekend conference and they had some experts from all around the world, including some Australian experts, Phil Mitchell again, Professor Phil Mitchell was there, as well as Ian Hickie. And anyhow one key thing I took away from that conference was that it certainly seemed that a diagnosis of bipolar disorder itself was still kind of a bit problematic on the one hand but on the other hand what they could be sure of with the empirical evidence was that mania was very clearly an issue for certain people and that depression very clearly was an issue for certain people as well. And that for certain sets of people they came together so thus the bipolar so a number of people experience the two of them and often one after the other.
GERRY SCULLION: Wow.
FARUK AVDI: So that was useful information as well. Because so much is being done on depression or is focused on helping with depression in Australia, we looked at mania as a particular problem and we were looking for something that might have an empirical tell, something that we might able to infer or detect via other kind of signals using the rich array of sensing and recording abilities that are found on a contemporary mobile. So mania is what we chose to focus in on and not mania once it’s kind of full blown. Really what we wanted to focus on was the potential onset of mania so we could actually intervene at a point or give people in that situation both someone living with bipolar and maybe others who are in loving relationships with them, to give those people an opportunity to take some action on trying to prevent the full blown onset of mania.
When I’m talking about mania here, also I’m talking about mania that’s experienced as distressing, not mania that’s experienced as a good thing or euphoric. You know there are certainly some people out there that experience mania and they really enjoy it and there’s a smaller set that have no other kind of consequence and that’s just like oh well that’s fantastic for them. But there are other people who experience mania and they experience it in a very distressing way and it can express itself in, you know some of the destruction can be like it can make them super prone to taking drugs and a lot of them or drinking vast amounts of alcohol or it can make them extremely sexually promiscuous or massively irritable in a very violent eruptive way, not necessarily physically violent but emotionally violent.
GERRY SCULLION: Yeah.
FARUK AVDI: Or they can, mania can express itself as gambling, you know like huge gambling binges where life savings are lost or obsessive game playing, online game playing, you know where a person sinks thousands of dollars into buying tokens to get to the next level of a game and plays a game straight up for 48 hours and a whole heap of potentially dangerous…
GERRY SCULLION: An array of problems.
FARUK AVDI: An array, depending on the person, depending on how it influences them and then there are other longer term, more difficult to describe kind of aspects of lower level mania called hypomania.
GERRY SCULLION: Okay.
FARUK AVDI: But anyway, leave that at the side for the moment. So we’re focusing on something that we could listen to or potentially infer from behaviour.
GERRY SCULLION: So what kind of behaviour are we talking about?
FARUK AVDI: We were thinking about mobile technology and we were thinking about the ubiquitous presence that a mobile device has in somebody’s life these days and all of the senses that it’s got. And so we know for example that mobiles can tell where they are, they can tell when they’re moving and how fast they’re moving and what cadence they’re moving. We know that mobiles can tell things like the luminosity of a room and that’s before you get to what they can hear and what it can sense in terms of the interactions that occur as a device as well as the interactions that happen with certain types of apps.
So the kinds of things that we can listen to in terms of people potentially experiencing the onset of mania, really what we were going to look for were in a change in pattern fundamentally. So a change in pattern where a person might have been interacting with their phone to X volume, X times a day with X intensity in terms of say you know the numbers of texts or the number of phone calls taken and the time that they were doing things. We could listen to all of those variables and infer a pattern when they were well or when they felt that they were well and to see a shift in that pattern to when they felt that they weren’t well or experiencing mania.
GERRY SCULLION: So how would it work so would somebody do an instillation of this app and give permission then for it to kind of listen?
FARUK AVDI: Yeah that’s correct. So we managed with the generous and very kind support of Gandel Philanthropy which is a philanthropic organisation in Australia, SANE was able to fund an essentially minimum viable product version of this service and what we called a ‘non-clinical trial’ that ran for three months until the end of last year, 2017.
And so during this period people basically they registered their interest for the service then because we needed to learn from the experience and we had, I think we had around 320/330 people register for it which was an implied kind of, with partners was a potential 600 people to participate in the trial.
GERRY SCULLION: So those 330 people, they’re sufferers of bipolar disorder?
FARUK AVDI: They were indicating that they were living with bipolar disorder.
GERRY SCULLION: Okay, excellent.
FARUK AVDI: That’s correct. And we put them through a pre-trial survey, which was quite extensive, and we saw some numbers drop off during that period. Meanwhile we did some design research and so we were still designing the app so that, some contextual enquires and a little bit of usability testing, plenty of participatory design involving design partner the firm Mobile Experience, Oliver Weidlich crew there and Jay Multoni xxx15.28 worked with us and also we got a company called The Project Factory involved to do the build and they’re based in Sydney here as well.
So there was quite a bit of participatory design whilst these other sign-up type events were occurring. Then once we had the app ready, which was a bit later than we expected, then we let people know that they could download it from Google Play. So they installed it from Google Play via their android device, because it was, android was the only platform that we could listen to in the way that we needed to, Apple was far more of a closed shop iOS.
So yeah download, install from Google Play and you go through an on-boarding process and part of that on-boarding was to provide the app with a series of permissions to be able to listen to certain things.
GERRY SCULLION: Wow. So what were the key learnings? Like what did you learn after the three months of the trial?
FARUK AVDI: Well I’m still working my way through the data literally.
GERRY SCULLION: And you’ve got the data in front of you.
FARUK AVDI: Yeah I’ve got the data in front of me right now and there’s realms of it but look there were learnings in multiple categories; there were learnings in terms of the design of the service, there were learnings in terms of the build, there were learnings in terms of how people were using it. The chief purpose of the MVP in so many respects was in typical xxx 16.49 kind of fashion.
GERRY SCULLION: Hypothesis testing.
FARUK AVDI: Exactly we were trying to see if our value hypotheses were accurate and I think there’s enough evidence to say very soundly that they were, our value hypotheses were accurate but there’s still a lot of other stuff in there that we need to process.
GERRY SCULLION: And a lot of synthesis and analysis probably to be done.
FARUK AVDI: Yeah.
GERRY SCULLION: It would be quite a rich data set I imagine after three months of 330 people.
FARUK AVDI: Absolutely. Well it wasn’t 330 people that went through into downloading the app. By the time we got to releasing the app there was a gap and we got some attrition in terms of the length of the survey but also people realising that an android was actually the platform and not iOS and despite us you know saying that over and over in various forms, people still kind of didn’t get it right up until the moment of needing to download it.
GERRY SCULLION: So what was the outcome? Just to touch on the actual MVP; so someone installs it, it does listening and watches for your behavioural shifts. What’s the outcome for the user? What do they get? Do they get alerts, or what does that look like?
FARUK AVDI: Yeah so in the MVP they got basically the ability to look at their data in different time aggregates, so of a month, of a week and of a day and the day view was very detailed. And they could see their, basically a visualised report on their activity, their interaction during the day and their interactive pattern and the intensity of what was going on and as part of that also, part of the set up, we got them to indicate certain things about their preferences for sleep and rest mainly and we could report back on that comparing the data with those preferences and we could also send alerts on that basis.
Now here I can mention the partner component. So the app was designed on the basis of two insights, one was the rather more obvious one about the ubiquity of mobile devices but also you know us identifying a potential place of intervention in the cycle of living with bipolar disorder of that moment of the potential onset of mania. So that was one insight.
The other insight, however, and this came out of the user experience research that we did but also out of a series, a wide range of other readings that I had done and also that intersected with a series of readings that Rod had done as well. The concept of dialogue, the concept of relationship; the insight essentially is that we’re in relationship, the degree to which we’re in relationship and feel good about those relationships is a very big part of our sense of distress or non-distress in life or sense of wellbeing or non-wellbeing. And a lot of the detrimental, the distressing impacts of mania with folks living with that occurred in the area of relationship as well; so work relationships or interpersonal relationships or if you wanted to look at it another way, relationship with self.
So out of that we constructed a social dimension to the service whereby the person or the primary user living with bipolar disorder could share the app data in its entirety and including its notifications with one or more other people in their life, fully in control of that. They can switch it off at any given time but they can share that if they wanted to.
GERRY SCULLION: Wow.
FARUK AVDI: So the person who was a partner in the trial, so we could only accommodate one person for the MVP, but that person would also download the app, they’d have a particular trial ID that was associated with their primary user, or the person living with bipolar disorder, and they would see exactly the same data and get exactly the same alerts and notifications.
GERRY SCULLION: Right, sounds fascinating. That sounds really amazing. And presumably they could then share that with either their doctor or psychologist.
FARUK AVDI: That’s correct. They could export the data at the end of the trial. But let’s imagine that it’s a service out in the wild, should SANE be fortunate enough to go the next step with this, which I truly hope they can, then once it’s a full blown service, then yes that data would be made available to clinicians, again under the control of the person whose data it was living with bipolar disorder, they could share that historical data with their clinicians and various ways of looking at it as well.
GERRY SCULLION: so there’s a whole huge potential there for spanning into that whole kind of psychologist’s for them being able to moderate and manage multiple people and….
FARUK AVDI: Well I don’t know about the word ‘moderate’ there. I mean so it’s not like the forums in that sense so but you know there are kind of interesting legal and duty of care issues that emerge which we looked at very carefully with some lawyers and also a couple of clinicians in terms of a person sharing their data real time with their clinician; what does that mean from a duty of care perspective? If that clinician sees a shift of patterns you know…
GERRY SCULLION: Who’s responsible?
FARUK AVDI: Exactly. So you know it could be that sharing it historically is a better way to go you know where it’s all happened in the past. But I can take that into my clinician or…
GERRY SCULLION: Analyse it together.
FARUK AVDI: Yeah and we can talk about it together.
GERRY SCULLION: What were you doing at that time and….
FARUK AVDI: That’s right.
GERRY SCULLION: Yeah, how did that make you feel?
FARUK AVDI: Yeah.
GERRY SCULLION: Wow that’s really interesting.
So there you have it. I hope you enjoyed this episode and if you’d like to be part of the conversation or community, hop on over to thisishcd.com where you can request to join the slack channel and help shape future episodes and connect with other designers around the world.
Thanks for listening and see you next time.
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