The following is the text of a keynote speech given by Mark Brown to ‘Mind the Gap’ the Newcastle Students Union Mental Health Conference on 29th April 2017. The live stream of this speech can be viewed here
I’ve been given the job today of talking to you about mental health and technology. To do that I’m going to have to talk about presents, pasts and futures.
I got into doing mental health stuff because of my own experiences. I was very ill when I was young, had a disastrous attempt at trying to get a degree, did the first year of a degree twice and then was unemployed. I still have mental health difficulties now. They’re not in my past, they’re in my present and will be in my future.
I didn’t have my first email address until I was 23. Didn’t have a laptop of my own until I was 30. I missed the dotcom bubble completely. When I first got the internet at home I started to share fiction I’d written on a website that I eventually ended up editing for a job. In 2006 I started a magazine called One in Four that was written by people with mental health difficulties for people with mental health difficulties. We did that for seven years. It nearly killed us. Some people liked it, some people didn’t. It didn’t make enough money though. It didn’t make any money. I had been inspired to start the magazine by reading blogs written by other people with mental health difficulties back in 2004/2005. So, trying to keep the money coming in to keep the magazine going I ended up doing lots of different mental health things, that did two things. The first was that it got me an opportunity to speak to lots of people about mental health and it gave me a chance to work on stuff that might change things for us, people with mental health difficulties.
In 2009 I joined twitter and somehow, as @markoneinfour, ended up with thousands of followers and the opportunity to see what social media was making happen. It was making it possible for us to find other people who’ve experienced things we have and to have conversations and find out where we differ from each other and have things in common. Just watching what happens when people can finally find each other and ideas that might not have been available to them in their own town or street has been incredible.
What I also found out was that changing things is hard in mental health, wonderful social media aside. And one of the reasons for that is that we find it very hard to see futures in mental health .
There was a time when I didn’t think I had a future. There are times where I still don’t. Living a life with mental health difficulty can rob us of our sense of the future; reduce us to living from moment to agonising moment.
So that’s why I think the future is so important. To live in a big long now and to accept that nothing will ever be better is a kind of exquisite torture.
This is what led me to technology as a way of to make change happen for people who experience mental health difficulties, because I want a better future.
So, in talking to you today I want to put together a toolkit for ways of thinking about what technology might do for mental health, reasons why that isn’t happening, ways that you can help get it to happen and you can keep yourself going in helping to make preferable futures happen when, if like me, you’re a bit mental yourself.
Probable, possible and preferable futures
First it’s useful to set up a framework to help us think about the future for mental health. Futurists or futurologists are people who have the job of making guesses about what the future might be like. They usually do this by studying the present and trying to discern which way things are going. I’m not a futurist, but my time spent doing mental health stuff has given me the opportunity to look pretty hard at the present world and the way it does or doesn’t help people have the lives that they should reasonably expect.
Futurists often use a relatively simple way of trying to understand what the future might hold so they can make better guesses. They deal in three kinds of futures: probable, possible and preferable.
Probable futures are the futures that seem likely to happen if nothing major changes from now, they’re about extrapolating from present events. They’re the futures that are like now, but morer.
Possible futures are the kind of futures you explore by being playful and mucking about. Sometimes they’re explored through stories, or films, or art or imagination. They’re the futures where we look at how bad, how good, how weird the future might be. They’re the versions of the future where we explore our desires or look at how one particular thing might change everything. It’s the jetpacks and flying cars future, if you like. The future that we try on to see how it makes us feel. Possible futures are where we try on our ‘what-ifs’ for size.
Preferable futures are the futures that are somewhere between the probable futures and the possible ones. Preferable futures are the ones that we look at and think ‘that’s where we’re trying to get to’. Preferable futures are the ones that we try to bring about by making decisions and taking actions now, bending the path of the future further towards where we want the future to be and away from the things we think will happen if we don’t do anything and just let events unfold. A preferable future is the one you get to by playing through a possible future and playing through the probable one and thinking ‘how do we get closer to what we want to happen, rather than what will happen anyway’.
The probable future for mental health has never looked more worrying. Levels of illness and distress are rising while all we have is the same old suggestions and the same diminishing pool of ideas. There isn’t a past to return to for mental health. Things were not better in the old days. We have to face the future. I was recently spoke at an event about mental health and digital technology. I told the audience:
“We are in the middle of the biggest roll back of public spending in generations. In the form of brexit we’re embarking on the biggest experiment in leaping into an economic and geopolitical unknown that our country has seen in at least a lifetime.
“In mental health we can often assume that the world we see around us will always look much the same as it does. That institutions like this one we’re sitting in will always be here. That there will always be an NHS. Always be social care. Always be human rights. Always be helplines. Always be homes and jobs and opportunities. I think right now we can assume no such thing.
“That is what makes our job all the more important and desperate… In much of the adult mental health world our possibilities are plateauing, either because we have gotten everything we can out of a particular technique, idea, practice or treatment; or because public and political will to provide the resources to fully use something to change people’s lives has flatlined. There is nothing traditional on the horizon that will save us from failing people with mental health difficulties in worse and more painful ways in future than we are today.
“Winter is coming”
This might seem gloomy. It’s meant to be, because that’s the future where none of us get to influence what happens, where the problems we have now don’t get solved and just keep getting worse. It’s the most likely future if we don’t start doing things now. That’s the future we have to fight against.
We’re going to have to look as possible futures and work out what kind of future we’d prefer. And the seeds of possible futures for mental health and technology are all around us, if we get used to looking for them.
I am a cyborg
I stand before you all as a kind of cyborg. I have already given over much of my life as a person who experiences mental health difficulties to being assisted by machines.
Every day I rely upon digital technologies to offset my cognitive deficits; to help me to plan and manage my time; to stop me getting lost between appointments; to keep up with important information; to make it possible for me to work in conditions that do not exacerbate my condition and to make it possible to communicate with people.
Without this technology I have to travel long distances to do important tasks; am at risk of missing out on information vital to my wellbeing and am in danger of losing my job through lack of adaptation and loss of effectiveness.
Through finding the right combination of digital technologies I’ve become far more able, independent and able to take part on my community. It’s giving myself over to this technology, becoming a mixture of person and machine that has got me to where I am today, standing in front of you all.
It sounds amazing and complex. What is this special mental health technology?
My phone. My simple, cheap, 80 quid chinese mobile phone. My very cheap phone has basically turned me into a poundshop robocop, following orders and stomping about.
It’s just the combination of stuff like calendars, email, maps and the ability to store and work on documents online. All of the amazing stuff that an average cheap laptop and a rubbish phone make possible when I can get online has changed my life. I don’t need to commute to the office; my phone reminds me of appointments, twitter and other social media keep me in touch with people and what’s happening. Nothing specialist. Nothing specifically mental health intended. Just basic stuff that everyone has if they have a computer or a smartphone. Just useful digital tools that I use to solve problems that I have and that offset my cognitive deficits and to mitigate the effects of my mental health difficulty.
These everyday, non-specialist apps and functions are often the difference between me being able to do my job and not being able to do any job at all. They aren’t even designed with a specialist mental health purpose in mind but make a massive difference to me and my wellbeing. Now, imagine we began to develop digital apps and services or to use digital tools in a way that would solve specific problems that people with mental health conditions experience; or to use digital technologies to provide new options for people to access the help we provide in way that suits them.
So there’s one possible future: a world where digital technology designed specifically for the problems that people with mental health difficulties have in their is available to all and makes life better for people who want to use it. It doesn’t sound too much to ask, does it?
Well, let’s have a look at that. There is a weird thing that happens when we talk about technology and mental health difficulty.
The conversation always gets sidetracked. It’s like we can’t keep our eyes on the target of doing things with technology that make people’s lives better in the here and now and we always end up talking about how we can do treatment via computers or apps.
There are a number of reasons this happens, all of which are human problems, not machine problems.
There are three myths that hold back people thinking about using technology to make life for people with mental health difficulties better. The first myth is that technology is exclusive and excludes people. The second is that technology is complicated for its users. The third is that technology can never understand the needs of people with mental health difficulties.
Myth #1: technology excludes people.
There’s a weird paradox with digital technology. It both feels like it’s been around forever and also that it’s new. That’s because we’ve been living through a period of technological acceleration where certain advances in technology have made things move more quickly. This leaves us confused about the extent to which certain technologies are new and exclusive and which ones are common and widely accepted.
Televisions, for example, stayed roughly the same for a good thirty years or so as big square boxes that sat in the corner of the room. They went from being covered in wood panels, as all good seventies technology was, to being made of shiny silvery plastic or classy matt black, but they were basically the same. Then, very quickly, that technology became obsolete when cheaper ways of showing repeats of Bargain Hunt and The Jeremy Kyle Show won out. But we’re still kind of confused as to when that particular technology actually arrived.
You can hear this in the way that right wing political rhetoric still talks about flat screen televisions as if they are the height of high tech luxury – “On benefits but can still afford a flat screen television” – as if flat screen televisions are new and the preserve of some kind of technological mega rich elite.
For some people, it still feels like this very common, increasingly cheap, technology has just arrived. For the rest of us it feels like somehow it’s always been here.
It’s weird to think just how recent the things in technology that make our conversations about technology and mental health feel real and possible actually are.
The iPhone was released on June 29, 2007 in the United States. The first commercially available smartphone running Android was released at the end of 2008 in the US. The first iPad was released on April 3, 2010, with Android and Windows tablets following soon after.
In the UK we had 3G mobile networks (networks able to carry enough information quickly enough to make mobile internet use possible) from 2004 onwards; with 4G arriving in 2008.
Digital technology became mobile and, as importantly, it plummeted in price. In fact, we’ve got to the point now where tablet and mobile sales are beginning to slow; mainly because the UK is awash with devices that are ‘good enough’ and people don’t see the necessity in upgrading or people pass on their old devices to friends, family or sell them to Cash Converters.
I’m sick of sitting on panels where someone from the audience sticks their hand up and says ‘but what about people who don’t have access to technology? Aren’t we excluding them?’ My answer is always this: ‘I think the statistics indicate that most people have access to digital technology if they want it. I think you’re afraid of the changes digital might make to people’s lives.’
According to Ofcom, in the first quarter of 2016 81% of adults in the UK had either fixed or mobile broadband. 66% of people in the first quarter of 2016 use their mobile handset to access the internet.
Although, it does matter who it is that doesn’t. According to The Office for National Statistics, as of May 2016 25% of disabled adults had never used the internet. Almost all adults aged 16 to 24 years were recent internet users (99.2%), in contrast with 38.7% of adults aged 75 years and over.
Digital technology isn’t going to go away. However there is one way that technology does exclude people, people like me with mental health difficulties, but I’ll get onto that in a minute.
Going back to the person from the audience sticking their hand up, I have said on at least one occasion: “Unless you want to find out who the people are who don’t use digital technology and why and whether they actually want to or not, I’m going to conclude that it’s probably you that isn’t interested in the possibilities of digital and you’re just speaking on their behalf without even asking them.’
That was them telt.
Myth #2: Technology is complicated
Science fiction writer Arthur C. Clarke, writer of 2001 amongst other things, back in 1963 wrote ”Any sufficiently advanced technology is indistinguishable from magic.”
And, when you get something well designed, that’s exactly what it feels like: a little touch of magic in your world. The gap between what you feel like you should be able to do using it and what you actually can do disappears. You stop even wondering how it does it; how many hours and hours it took to develop it and by what technological magic it happens. You just go ‘ooooooooooo’ or, more usually, you just accept it does what it does and then you start to show people the results of what it does. How it does it stops being important.
A good app is one that does the thing you want it to do in a way that you expect it to. The right technology with the wrong interface is the same as the wrong technology.
It might take a huge amount of time and working with people and testing and failing and rethinking and trying again, all hugely complicated work to be done; but in the end the objective is to create something that just works.
When we get tech right, that’s what it does. It just works, like magic. But how do we make sure that we get it right?
Myth #3: technology will just never understand mental health.
In mental health we can fall into the trap of thinking that no one understands us and our needs We believe it’s our fault that we cannot get on. We are failures at being human. In our mental distress we are misshapes, bad programs, aberrations. Unlike other people with disabilities we yearn to be let back into the normal world. Most of us yearn to pass, to be invisible, to be normal folks. We, those in need, are expected to, and expect ourselves to, find within a reserve of energy, a magical pool hidden within the source of our being that will rejuvenate and fix us. Somehow we believe that one day we will be reborn, springing from the garbage of our disordered lives and glistening like stained glass dragonflies free of the hideous, misshapen larval stage of our mental health difficulty. Because we are often expecting not to have our needs met it stops us from actually thinking about what the problem might be in enough detail.
This can prevent us from doing the most vital thing we can do in thinking about technology and mental health: it prevents us from actually formulating problems that people might solve.
There’s a way in which the world of being in mental health need is like the experiences of Josef K in Franz Kafka’s The Trial. In the novel Josef learns that he is to stand trial for something he which he is not aware he has done. Kafkaesque is often used to describe the baffling wheels within wheels of bureaucracy, something not unfamiliar to many of us who have lived with mental health difficulties.
But there is something even more relevant than that for us in Josef’s experiences. As Josef tries to make sense of the various confusing and perplexing orders and guidance he is given he finds out something: he finds out that, having travelled through most elements of the arcane and perplexing legal system, that he is the one that understands it most. None of the individual cogs in the machine know anything beyond the tiny area illuminated by the the role they play in it. The machine is so big and so complex that no one Josef meets even understands the shape of it or what its overall purpose is. It’s him that makes things fit together. He ends up with the greatest understanding of what’s going on, because he has to live through all of its different elements.
And that’s where people with mental health difficulties are: we’re the people that see the most of processes because we have to. We travel through each layer of the ways that society responds to mental health difficulty and we see them all. No one profession sees all of the ways in which being in mental health need affects your life.
It’s like we’re testing the world to see how friendly it is for people who experience mental health difficulty and mental distress by just moving through it. If there is any group of people who are the memory of mental health, it’s us. But at the moment we remain damned data. We remain as anecdotes and afterthoughts while the real, proper world of professional mental health continues around us, occasionally consulting us.
So we need to take the initiative: we need to work out together what our problems are. People who build software and work with technology are engineers. Engineers love solving problems. That’s what engineers are for. You set them a problem and they try to solve it.
To date, a lot of the work in mental health and digital technology has been about solving medical problems. The pipeline has been from medical research, to developer, to end user. This has meant that the prism through which mental health tech has been viewed has been a one defined by clinicians and medical researchers. Us civilians have just been the passive recipients even though we’re the people who are meant to be benefiting. This however, is like when your Mam goes to buy a coat for you. Yes, you will get a coat from the interaction; but you can be damn sure that it’ll either a) get you beat up on the way to school or b) look absolutely ridiculous when you pair it with some strappy shoes and a new dress. Or c) If you’re me, both.
The assumption there is that lots and lots of statistical knowledge will translate into a great app or service that works for people. And it doesn’t. You can’t design great things from abstracts. You design great things from understanding the problem that people have and the things they expect and the way that they live their lives.
You don’t need to be able to make an app or a website yourself to come up with a really good problem that someone should solve. People do that for a living; you just need to help them to know where to direct their efforts. In fact, that’s why digital technology is our best bet for better mental health because we already know a lot about mental health. If we live with mental health difficulties, we know lots about our lives. And other people know a lot about tech and also make a lot of money out of getting it right. So, we’re halfway there. The direction of travel is that there will be more breakthroughs and research in digital technology each year, which means if we carve out a space for mental health in that we will reap the benefits of a direction of innovation that is already unfolding.
In fact, the formula I would use for thinking about digital technology and innovation is:
Knowing what kinds of cool stuff technology can do + thinking about small, well defined problems = ideas for possible digital solutions.
Once you looking at tech for possibilities and you start looking at life for problems you’ll find yourself developing the habit of playing with ideas for new solutions or finding ways that existing tech might be applied to problems you know people have. Congratulations! You’re now playing the possible futures game. Welcome futurist! Achievement unlocked.
Looking toward digital in mental health doesn’t need to be about massive transformation; it just has be about solving a particular problem and solving it well. If we spend our time with people, people we care about, we will see problems without solutions all of the time. Looking at digital as a way of solving people’s problems doesn’t have to be massive. It gives us a chance to build things that might initially change the lives and health of a few people, then a few more. And then more.
Sometimes the answer is a new thing. Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all. There are lots of techniques and structures for creating people driven design that can help you work that out. All of them go from working out with people on a possible problem, to testing whether it really is a problem by checking with people, to working with people to find a solution to that problem that works for them.
I was lucky enough to work on an app called Doc Ready. It grew out of young people’s experiences of going to see the GP and feeling that they weren’t being listened to. The young people initially said that they would like GPs to have a translation device like something out of Star Trek that would translate young people’s language into language a GP would understand. That was terrible idea. But it was a really great problem. Traditional approaches to the problem always centred on telling young people what their rights were or teaching them about what GPs did. But it didn’t help them to feel listened to. So, Doc Ready did something different. It ended up being a really simple, web based app that helped young people to do one very simple thing: get ready to see the GP for the first time to talk about their mental health. The way it does that is simple you select a category like ‘feelings’ or ‘thoughts’ or ‘work’ and it gives you some statements you can choose to add to a checklist. Once you’ve seen the kinds of things you could talk about you can also add your own. All the app does is get you to make a list of things you want to tell the GP so that if you get too embarrassed you can just show them the list, or if you find yourself too polite to honestly answer the question ‘so, what can I do for you today’ you have something to give you encouragement. And that’s all it does. But we found from evaluating it that it works. People find it useful. And it solves a problem that people really have.
And we got to that thing that works by making sure we actually had a problem that people really had, and then meeting with them regularly so that they could tell us if the thing we were making actually solved the problem as they experienced it. We didn’t need to know everything about mental health, or general practice. We just needed to know we were hitting the spot.
Other human problems we have in thinking about digital and mental health are based on our thinking getting stuck in only seeing what there is now as what is possible.
Stuck thinking and fear of change
A problem that happens a lot in development of mental health technology is the creation of things called Skeuomorphs. I saw a talk by David Mohr where talked about the ways in which we’ve been getting tech in mental health wrong for decades, and he blamed Skeuomorphs amongst other things. Skeuomorphs happen when we recreate an existing thing in a new medium. The best example are those chandeliers where the electric bulbs are made to look like little flickering candles. The electric bulbs don’t need to look like little flickering candles, they just do because that’s what we expect. And we do the same with mental health tech. We assume that it must be a recreation of something that already exists. So we get online therapy that lasts for fifty minutes and you have to do sitting at a laptop. Or we get electronic communications between patients and professionals that look exactly like printed letters. Or sometimes actually are printed letters that someone has scanned. We get the shape of something confused with its purpose. Medical professionals can be very susceptible to this in mental health because they embody the shape of things as they are, it’s their very life and professional practice. And that stops them thinking about new ways of doing things. As David says, the average interaction with a smartphone is 15 seconds, so why do we build mental health apps that need things to be done in 20 minute chunks? It prevents us actually making things that work for people by being woven into the fabric of their everyday lives.
The final problem is the fear of actually building enabling tools rather than ‘curing’ people. For other disabled people, it’s pretty well accepted that it is the world designed for people who aren’t disabled that makes a disabled person disabled. Building buildings without lifts is the problem, not that someone can’t climb stairs.
When it comes to mental health difficulty and technology people have a weird kneejerk reaction against technological aids. We know that different mental health symptoms or experiences cause different challenges or problems. Knowing that we could, for example, write a word processor that recognises when your thoughts get jumbled. It’s possible. It would remove some of the barriers to people who are experiencing certain mental health symptoms at university.
But then you get this response: We can’t mollycoddle people. If we do things for them they’ll never learn. If we give people access to aids and assistance they’ll have an unfair advantage over people who have to do it for themselves. If we do that people will rely on the technology and never get better at something themselves.
And, on such rocks does the enthusiasm for changing the lives of people with mental health difficulties crash into thousands of tiny pieces.
It’s a ridiculous argument, that we need to teach people with difficulties to be better people in future, even if that stops them doing the things in the here and now that would help them. We are all cyborgs now, to a lesser or greater extent. We all rely on technology. There’s a fair chunk of you that wouldn’t be alive now to be listening to this were it not for the fruits of one technology or another. No one suggested I would lose the skill of cross country perambulation by not walking up to Newcastle from Leeds.
How many of you are wearing glasses? How many of you have been in hospital for any reason? A fair proportion of us would have died before our fifth birthdays without technology.
And, this in some ways, is a fundamental problem: society at large is often uncomfortable with the changes technology might bring for other people apart from themselves. This includes medical professionals. This is why we have such an amazing opportunity to begin to make digital technology that solves problems in people’s lives, not the problems of the services that are supposed to help us.
So, whats holding us back is we are scared of change; that we’re not used to working out problems; we aren’t used to playing; people sometimes don’t want tech to happen if it challenges them and there are people who would rather not think about tech at all.
So what cool stuff do we have to play with in thinking what our possible digital mental health future might look like?
Horizons, hype cycles and wild victorian machines
With technology and mental health we are still at the stage of wild victorian patents. Apps and services are like steam powered hairdressing machines or static electricity powered trouser presses. We’re in the first explosion of failed applications; a world of solutions to problems people don’t have and crankish nursed obsessions turned into patented devices and labour saving miracles. I Tunes and the Play store are like the back pages of a victorian penny dreadful; filled with the equivalent of ‘Worthington’s Miraculous patented coal powered back massager! A boon for housewives! A bounty for busy men! A tonic to the body and the mind! See tension just disappear before its magnificent steam powered touch!’
And this is just as it should be right now, because really no one has a bloody clue what they’re doing, because the future is coming into being. It’s the unfolding present. It’s not fixed.
New technologies are appearing more rapidly than ever before, and it’s up to us to see how they might be applied to problems that we face.
Each year information technology research and advisory company Gartner Inc. publishes The Hype Cycle for Emerging Technologies, where they track where various technologies are in their cycle of of maturity.
The cycle looks like a rollercoaster beginning with a steep climb that leads up from the Innovation Trigger to the Peak of Inflated Expectations. Technologies here are in the ‘everyone throwing investment at them’ stage. Then, just like a rollercoaster they speed down into the ‘Trough of Disillusionment’ which is when everyone realises that no matter how cool they seemed no one quite think of a reason for anyone to actually buy and use them. They then climb slowly up the ‘Slope of Enlightenment’ where people begin to see what the technologies might actually be used or sold for and then finally pass out of the cycle into the ‘Plateau of Productivity’ when people can consistently see the point of them and are prepared to pay money for them. The cycle also estimates the time in years each technology is away from mainstream adoption. In the 2016 on the way up were things like Connected Home, Smart Robots and Virtual Personal Assistants. On the way down were Autonomous vehicles and augmented reality and climbing the slope of enlightenment was virtual reality.
The Hype Cycle shows that the gap between initial promise and things actually being used by lots of people can be large. Touch screens were in the Trough of Disillusionment for about twenty years until Iphone and Ipad made them things that people understood that they wanted. That’s why it’s great that there is so much weird and strange tech about, because that’s where the seed of possible futures are.
At the beginning of 2016, independent health charity thinktank The King’s Fund published an article listing eight digital technologies that they feel will revolutionise health and care. The authors Cosima Gretton and Matthew Honeyman divide the article between technologies that are “on the horizon” and those “already in our pockets, our local surgeries and hospitals.” The list included such possibly dystopian science fiction stuff as tablets that tell professionals when they’ve been swallowed; and possibly more benign stuff like digitally controlled implants for releasing medication on command from an implant and cheaper, quicker genome sequencing to better understand how different people might react to different medications.
Number one on their list, though, is The smartphone. One of these little beauties. See, it isn’t just me that thinks they’re an amazing thing. The smartphone is ultimately a tiny powerful computer that is very, very good at sending and receiving data and interfacing with other things. It’s a basic platform that things can sit upon, can be coordinated by and interface with. It also makes and receives phone calls, sometimes. In the main, though, the smartphone is an amazing thing for health because, unlike just about every other health intervention, we love our phones, we value them, look after them, carry them around and pay attention to them without even being asked. The smartphone, as a portable computer can be the springboard for lots of other things which is good news for our future.
Other entries on their list included:
Something they call ‘At-home portable diagnostics’, the use of particular bits of kit either on their own or in conjunction with other devices like smartphones to provide diagnostics, reading or measurements and help professionals and patients to interpret the results. A familiar example of this will be things like blood glucose monitors for diabetes.
The authors also included smart assistive technologies in this category. Lots of people use devices and apps to help them to do things they want or need to do. With addition of sensors and ways of communicating the data they produce; these things from adapted cutlery to walking sticks can track how they’re used over time and hopefully feed back lots of useful information about what they’re place in the lives of their users tells us about their user is doing. Though, in this case, it’s not always clear whether people will want their walking stick grassing them up to their medical professional for not going for a walk or their inhaler telling their doctor when they’ve had a cheeky fag.
Also on the King’s Fund list were digital therapeutics. These are health or social care interventions delivered wholly or mostly on computers, tablets or smartphones. Mental health is rife with these interventions. Everyone is trying to crack the model for delivering evidence based psychological therapies at scale using digital devices. To my mind no one has quite managed it yet.
They also included machine learning. If you’ve ever used the google search engine you’ll have noticed that over the last few years it’s gotten better at guessing what it is that you’re searching for or what you’re asking it to do. This is because google is learning from the inputs of people who use it. Machine learning is about programs that are set-up to process data and to find things in that data they haven’t been specifically asked to discover.
Machine learning means that programs used to recognise things can begin to spot new patterns not obvious to human observers or to make suggestions about new things that it is shown based on previous things it has seen. There’s lots of machine learning stuff around at the minute. If any of you use google photos you’ll know that when you upload all of your snaps you can use google photos to search amongst the images using words like ‘cat’ or ‘party’ or ‘house’, even if you’ve not labelled any of the photos. Google photos just guesses what’s in the photos based on other photos that it’s seen in the past. The implication is that if we have programs that look at data for patterns we’ll end up with programs that can make guesses when exposed to new data.
We could, if we wanted, tomorrow instigate the biggest ever study into the effects of psychiatric medications if we wanted. People are already using wearables to track their heart rate, their activity, their sleep. People are already tracking moods and calories. We could just say ‘hey! people! contribute all of that data to us along with what medication you’re taking. Then we’ll try and see what it tells us’. We could find ways of personalising dosage of that medication from that data. It would tell us lots of things that we hadn’t thought to ask about. People could generate the data for themselves and then hand it over willingly, in all of its complexity for others to make sense of, like happens in the citizen science movement where people put up home-made weather stations in their gardens to collect local level climate data.
Gretton and Honeyman also include connected communities as a big health and care impact. Given that social media and apps and services with social functions can now bring us together.
If we combine Gretton and Honeyman’s list of at home portable diagnostics, digital therapeutics, machine learning and connected communities and the Smartphone what you end up with is the potential for digital technology to fill in many of spaces where healthcare finds it difficult to reach, especially focusing on the bits of people’s lives which don’t take place in hospital or the consulting room.
Other things that I’ve seen recently which were cool were a project using virtual reality to help people who voices speak back to their persecutory voices, an app that used machine learning to recognise facial expression to help doctors tell the difference between kids with ADHD and autistic kids, a project using technology like Amazon Alexa to support people experiencing hallucinations, jumbled thinking and depression at home and Paro the robot seal which responds to touch and voice and eye contact and was just so cute I wanted to steal it.
Diversity and outside pressure: the war on tech bros
So, all this tech is amazing and the future is going to be saved? Well, not quite. Remember I mentioned that there are ways that tech discriminates against us, people with mental health difficulties? Well it does. Tech discriminates against anyone it doesn’t think is important. Tech follows the money. It looks to solve problems where it sees markets. Things climb out of the Trough of Disillusionment when people find markets for them, and at the moment you and me if we have mental health difficulties aren’t seen as a big enough market.
So there are two things we have to be thinking about: diversity and external pressure.
Digital tech is still the preserve of tech bros, and tech bros don’t have the same problems you or I do. They work in tech, they have access to money, they tend to be healthy. Not all of course, there’s strong thread of mental health difficulty runs through tech but often big tech choses not to care. Just as it doesn’t always seem to care about racism, or sexism or harassing members of the press. But the tech bros either solve the problems tech bros like them have, like quicker pizza delivery or not wanting to do laundry or they messianically decide they no best and try to solve a social problem that they neither understand properly nor have experienced. They constantly ask ‘could we?’ and it’s up to us to push back and say ‘should we?’
That’s why we need to get as many non tech bros into tech as possible to make sure that tech bros don’t just make a world for tech bros. This we do by taking ourselves and our identities and our problems into those spaces. We can also do it from outside. Things often don’t change without external competition or pressure. It’s up to us to be advocates for better mental health tech, more diverse mental health tech, it up to us to start pushing possible and preferred futures forwards. The main reason things do not change in mental health is because the voice for change is quiet. We demand a better future.
The best voices on our tech futures come from people who aren’t tech bros. Go read Gabriella Coleman on hackers and anonymous. Go read Sarah Lacy at Pando on Silicon Valley. Go read danah boyd on social media.
Not paying attention to digital technology doesn’t mean it won’t happen. It just means that the digital technology in mental health will be built by people who understand the people sized problems of mental health less than we do. That’s why we need to stay at the table, get our head around the possibilities and the things people need and influence what happens.
The Angel of History and facing the future
So, I’ve explored a bit about technology, what might be coming up in mental health and what’s around now, how we might think about it and what might get in the way of it happening. And I’ve set out where we might take our place in making it happen but all of this is based on a promise of the future; of finding ways now to make sure that the most probable, that things will continue to get worse, won’t happen. But how do we keep ourselves going into that future? How do we find the strength to turn around and face it?
Writing about a painting by Paul Klee, Walter Benjamin talks about the angel of history, wings outspread, being blown into the future while forever facing backwards:
“His face is turned toward the past. Where we perceive a chain of events, he sees one single catastrophe which keeps piling wreckage upon wreckage and hurls it in front of his feet. The angel would like to stay, awaken the dead, and make whole what has been smashed. But a storm is blowing from Paradise; it has got caught in his wings with such violence that the angel can no longer close them. This storm irresistibly propels him into the future to which his back is turned, while the pile of debris before him grows skyward. This storm is what we call progress.”
That’s what we often are when we are talking and thinking about technology and change; we feel that we can only see what’s lost, what came before and that we can’t even turn to face what might come next because instead of knowing where we’ve been and being certain, we’ll be carried away into something where we’ll be insecure, at risk of being wrong. The debate about technology and mental health often focuses on what might be lost rather than what might find.
Technology has helped us find each other. Technology has helped us to understand who we are. Technology has helped us to learn more and see more. In my case it’s helped me to be more. People are facing the wrong way.
But, more than that, often we find ourselves facing backwards at our own pasts when we think about our mental health, unable to see a way to the future. Like the angel of history we just see the wreckage of our own past mistakes stopping us travelling back to when everything was OK, before we messed up, before our heads fell to bits.
Last year I wrote a piece for a mental health zine, an open letter to anyone growing up mental. I’m old now, I’ve been doing this being mental thing for years, indulge me. It’s a little guide to finding a way of facing the future when you feel like the future has been erased and when you feel that never mind a world where technology makes life with mental health difficulty better. It’s called ‘Just’.
“I’m lucky. The time I spent very ill wasn’t amazingly long. The rooms full of rubbish and rotting food and unwashed clothes and ribs like a clenched fist under my pale skin did not last for years. The terror and the loss and ache in my chest and the days and days spent in bed, trapped in the smell of myself, were not infinite. The scars are not too numerous and, in the end, never getting a degree hasn’t mattered too much. I found people and I found help. And then I found different people and different help. I’m still finding people and still finding help.
“I was 23 when I first received the diagnosis of bipolar II. Like me, you’ll spend most of your life looking for a name to explain what you’re feeling; what you’re experiencing and even longer trying to escape from it once it’s been named. You’ll look at other people as if you were on a ship pulling out into dark rumbling sea surrounded by mist. You’ll fall in love with the romantic image of yourself; lonely and slowly waving at everyone else happy on the shore. As a teen you’ll find it hard to know if you’re unwell or weird or angry or fed up. Other people will find it hard to tell, too.
“And there’ll be shame and embarrassment. At things you didn’t do and things you did. At times you’ll feel so heavy with horror at your own actions you’ll want to fall into the heart of a star or burrow deep into the mouldy; wormy earth. There’ll be times when your thoughts aren’t your own; where what you see and feel isn’t what others see and feel. And you’ll be terrified.
“There’ll always be people who are having far more upsetting experiences than you and people who are having problems that cause them less trouble than yours do. People will tell you that but it doesn’t matter: your life is your life.
“You’ll be tricked into thinking other people have it sorted; that you are just like them but gone wrong, like a plant growing the wrong way or a cake come out the oven the wrong shape. In reality; it’ll probably take you longer than them to find out what the right path is for you because you’ll be forced down paths they’d never choose to travel. Some of you will find out you’re gay or bi or something else. Some of you will find out you’re straight. Along the way you’ll make friends and you’ll lose friends. Some of you will lose your religion and some of you will find it. There’ll be births and deaths and dramas. Some of you will end a different gender to where other people thought you started. There’ll be times where you desperately hide what’s going on in your head and other times where you’ll be desperate to let it out and it won’t come. There’ll be other times when you’ll think you have it all under control while to everyone around you it’ll be as obvious as clown make up or an extra limb.
“You’ll spend years looking for ‘it’: that intangible sense that you are allowed to be who you are and that there is a space in the universe for you. Some of you will find it in the eyes of your first child or in a kiss behind your ear from your lover. You might find it in contemplation of God or in the dirtiest joke in the world. It’ll hit you one day slipping to the corner shop in your pyjamas for fags and a paper; on a monotonous grey motorway drive; answering a text from a friend; shrieking in ecstasy at a sex party in a European suburb. It might be in work, or it might be in everything but work. One day; maybe just for a minute you’ll feel ‘it’s OK to be me; it’s OK to be who I am’. The feeling will pass, other less existential concerns will crowd in, but you’ll remember it: the feeling of no longer beginning with an apology.
“I’m 39 now. I still need a whole mess of help. I still fuck up. You’ll still fuck up, too. But you’ll get better. Stuff might never go away; but you’ll get better at living through it; living around it; finding people to help you get through.
“Eventually you’ll find some way of living with being you in all of your terrible, horrible, gorgeous, glory and you’ll be able to whisper to your past self: ‘See, I told you you’d make it. Just.’’
So this is what we must do, to help make the future we need. We first must believe that there is one and that we can turn to face it. We need to see that there is a future with us still in it. We need to look at the possible futures, explore them, try things out. We need to work out where we want to get to, where we want to be. And then we have to start taking action, taking risks, turning from accepting where we are and who we are and finding what we can do to make the future we need happen.
We need to make sure that this digital future for mental health is not made by people who don’t care about us.
Sometimes that’ll be about doing; sometimes it’ll be about speaking ourselves; sometimes that’ll be about helping to make situations where others can make and do.
I’ve only just scratched the surface today. Technology isn’t going to go away. And neither is mental ill health and distress. We need this future, a better future, and we need to begin work on envisaging it now. Because the world is full of people who want to make a worse one.
Mark Brown is development director of Social Spider CIC. He is @markoneinfour on twitter.