Mental health and digital technology: getting ready for a future already happening
If people who know mental health don’t get involved in making the future, the future for people with mental health difficulties will be worse.
The following is the text of a keynote speech given by Mark Brown at ‘#MHProud19: Celebrating Mental Health’ at Middlesex University on 17th July 2019.
I’m here to talk to you about the future. The future is happening now. This very second. As I’m speaking billions upon billions of individual decisions, interactions, events and occurrences are happening which are themselves causing billions of further events.
What I’m going to do for you for the next half hour is take you on a little journey into the much discussed and much maligned area of mental health and technology. What I want you to feel at the end is that you know what questions to ask about technology in relation to your work and in relation to the lives of people who experience mental health difficulties and also to have examined your own presumptions a little bit. And want you to feel that making the future is part of your job and your role, not just people who are good at code or tinkering with machinery.
Why do I want this? Because I want you all to play a part in the making of the future for people who experience mental health difficulties. It’s our job to decide what kind of future we actually want, and, ever more importantly, to lend our knowledge, expertise and power to making sure that those in need and furthest from power do not get a future that kills them, ruins their lives or which moves them even further from the rights, hopes and possibilities that should rightfully be theirs.
Technology isn’t a special kind of magic that needs to be warded off by desperate prayers and tea break exorcisms. Technology is something made by humans, resourced by humans and deployed by humans. We decide what technology does, not technology itself. Technology is not a force of nature which follows its own natural laws. Humans control technology. If technology exists that harms us; that’s because the people making it, selling it or using it think that what they want to happen is more important than what we want happen.
I firmly believe that all of you, professionals, people who experience mental health difficulties, people who are both, have a vital role in making sure that technology makes people’s mental health better. without your knowledge, your experiences and your input technology will be used in ways that serve every other interest first before serving the person who is living day to day with things that are beyond their own resources to live with.
My assessment is that there are too few people with on the ground experience involved in mental health technology creation and too many people who are more concerned with the technology than they are with the people it is intended to help.
Too often, healthcare technology is developed with the needs of systems considered first, and the needs of people, both patients or service users and professionals, considered second.
I was in Liege a few months ago, giving a little speech about how we put patients at the centre of health technology. I told a room full of european tech and health policy people:
“Health problems are lived by people. Digital tech shouldn’t be hacking the person with health needs, it should be hacking the things that stop the person being as well as they can be. To really make people’s lives better beyond the hospital or consulting room, digital technologists need to be the champion of the patient, not the system.”
And it’s you, all of you, who aren’t digital technologists who can help to make sure that happens. ‘Does this thing get me closer to what I want from life?’ is what people with health or care needs ask. As people who care about mental health and the lives of people, we all need you to step up and be ready for our part in making this technology that gets people what they want and need.
Two big questions for mental health and technology
There are two big questions we must ask of any technology introduced into the lives of people who experience mental health difficulties or into the systems that support them:
‘Does this technology increase the level of autonomy and freedom people with mental health difficulties have within their lives?
and
‘Does this technology increase the speed, ease or convenience of people who experience mental health difficulties in accessing the quality and quantity of care, support and treatment that they need?’
Without those two questions together, not separately, front and centre of every conversation of mental health and technology, everything else is a distraction.
If money is being spent on things that don’t make better the lives of the people we care about, at best their lives will continue as they have, but at worst their lives will get worse.
It’s quite right to be sceptical about technology. It’s quite right to be sceptical about medication. Or talking therapies. Or public policy. Or anything that humans make for any purpose.
I spend a sizable chunk of my life looking at technologies intended to help people thinking ‘this is bloody awful.’ I see a lot of technology that, while beautiful in itself, is so far from being able to do something that really helps the people it says it intends to help it actually becomes more of a hindrance or even a danger.
But people are often terrible sceptics. To be an actual sceptic you have to actually be interested in the thing you’re considering. You have to be prepared to look at it clearly and in the spirit of kindness and ask ‘does this thing do what it says it will do?’ firstly and then ask ‘will this thing add value?’ and then ask ‘what will change if this thing does the thing it does?’
It’s quite right to be sceptical about everything when it comes to making sure that people who experience mental health difficulties, distress and mental ill-health get the care, support and help to which they have a right. Technology is no exception, but it’s not a special case either.
Don’t think only tech people understand what tech does
If you want to be a positive sceptic of mental health technology there are a number of steps you need to take.
The first is to avoid assuming you’ll never understand technology. While exactly how things work might bamboozle us, we can still understand the basic idea of the things they’re meant to be doing.
Digital technology can do a number of amazing things.
Digital technology can make different methods of communication possible. Video, audio, chat, emoji, text message, chatbot, website, ebook, avatars, virtual reality. Think about how the people that make up your life might want to communicate, and when, and how.
Digital technology can make things portable and replicable. A letter exists on one piece of paper if you handwrite it. Once you send it, you don’t have it anymore. Digital makes it possible for the same thing to be in lots of different places in different forms at the same time. This and communication means that physical things and digital things can interact over great distances to do tasks that used to only be possible if everyone was in the same place.
Digital technology doesn’t get bored. It can do the same thing over and over again without getting bored or making unexpected mistakes. It can execute complex tasks over and over again. That’s really what we’re talking about when we talk about automation.
Digital technology can collect data far more numerous and far more easily than human hand and eyes can. It can see patterns in data that humans can’t. That’s all machine learning really is. It can know where you are and what time of day it is. It can monitor, suggest, report.
Digital technology can assist other tasks. Your phone can probably translate a document in a language you don’t speak. It can extract words from a written page and get them into an electronic form you can edit. It can read out documents you can’t see well enough to read or can change what you say with your mouth into written words. (sometimes if you are a geordie)
Digital technology can make experiences. We all think of games, but any digital product can be an experience, too. It can teach, it can support, it can make something easier or more enjoyable. It can create impossible landscapes to explore or very mundane ones where you can try to overcome your phobias.
Digital technology can make things happen in real time and can make it possible for people to collaborate more easily. It can send words, sound, pictures around the world in less than a second. It can make things happen in ways that aren’t simultaneous, too. Think of your whatsapp chats or text message conversations. Sometimes they spread out over months with days between messages. Other times they happen as quickly as a face to face conversation.
Digital technology can make things that respond to individual preference and need. We often think about digital technology as something that is go big or go home. But what digital can do is make the same thing available in different ways to different people depending on their needs, desires and wishes. Some people like dark backgrounds in apps. Some people like light. Some people like reading on a computer screen, some people on an ereader like a kindle. Some people need lots of complicated options in an app and others just want the three most important ones.
Digital means you can build personal preference into standardised things. How do we know that someone wouldn’t rather have their CBT homework as an audio file? Or that maybe displaying your clinical history wouldn’t be better done like a facebook newsfeed? Or that sending a clinician a text message through a safe system might not be the difference between life and death?
Digital technology can also make things that bring all of those other functions together into things that seem simple but under the bonnet, behind the scenes, they’re doing things that are massively complicated so that you just can interact with them in a few keystrokes or finger or thumb pokes. Social media like facebook or twitter or instagram or youtube feel relatively simple to use, but underneath they’re complicated bits of technology that run on our massively complicated under the surface devices that allow us to make even more complicated things happen for good or for ill. You don’t need to understand how twitter is programmed to understand that people use it to be massive racists or use it to find other people who’ve experience what they have in mental health.
Don’t get hung up at the beginning on the idea that you don’t understand how something works. Focus on understanding what it does, and what effect what it does has on the lives of people. Research into how digital products and services can and do help or hinder people with mental health difficulties is in its infancy, mainly because so much of the debate in the past has just asked ‘is technology good or bad for people?’ rather than asking the much more useful question ‘how does technology change things for people and how might that technology change?’
By the time you notice it, it’s already happening
To a great extent, what you think of as being as being futuristic is already old. Technologies don’t spring from nowhere fully formed. What happens is they get to the point where we notice them. And we only usually notice them when they change something about own observable everyday life.
By the time we have spotted something that looks and feels new, we are already in a relationship with it because unless we’re really into thinking about the shape of the future, we don’t really remember when something first appeared we just remember when it began to change the way our lives work. By that time, it’s often too late to really change the direction that technology is taking the future towards. Tech nerds and rich people had been banging on about mobile phones for years, but we only really noticed them when suddenly our teenage kids were bleep blooping text messages on day trips out instead of listening to our knowledgeable disquisition about the origin of neolithic standing stones. We only really noticed the effect of internet commerce when the shops on our high streets started to close not when we first bought something disappointing and the wrong size from from ebay.
You can’t really change the future if you only discuss it once it’s arrived.
Generally speaking, the passage of technology into common use and acceptance follows three stages; rather like falling into passionate infatuation with a super strong crush. The first stage is that your beloved is everything you ever wanted and their very pocket lint holds the secret of eternal happiness. The second stage is your first argument; first experience of disillusionment when even the very mention of their name makes you cringe with horror at your own rosy-tinted fantasies. Then the third stage is you either break up or you find a more realistic view of them and you work out together how you can make things work and both get what you need.
Technology is the same. At first something new is pitched as being the answer to everything. Then it’s the answer to nothing and how could we have been so stupid? Then it’s the answer for something, which may or may not be the thing it was originally intended to do. For any of you who work in health services, the paperless NHS and electronic patient records might well spring to mind.
Technology insinuates itself into our everyday lives. By the time it’s established enough for most of us to have opinions about, it’s only people with more power than most of us who can change its direction. We might decide that the internet is killing our high streets and decide to shop local, but by that point the internet has already patterned how commerce works. We might decide that social media is a modern scourge but us deleting facebook doesn’t change how everyone else uses it or how facebook itself conducts itself.
Not all technologies are treatments and not all technologies are IT. All, in one way or another are services or interventions.
Not paying attention to digital technology doesn’t mean it won’t happen in health and care. It just means that the digital technology in health and care will be bought and built by people who understand the people sized problems of health and care less than we do. Digital technology is not a possible future, it’s an unfolding present. Digital is already changing things. A change you choose is much less painful than a change forced upon you. We have the opportunity to make the best of digital technology so that we can make the best use of ourselves, our skills and resources. That’s why need to stay at the table, get our head around the possibilities and the things people need and influence what happens.
Ask good questions
The second thing you can do when examining any digital technology is to develop your scepticism usefully.
Ask ‘Who is the technology intended to help?’
Ask ‘How do you know that this technology is what people who have the problem think will help?’
Ask ‘Who was involved in developing this technology and who did they work with in arriving at this answer when there may be millions of other answers?’
Ask ‘What is the relationship between the features this technology has and the problems that people say they want solving?’
Ask ‘Who does this technology belong to and what do they want out of this interaction?’
Ask ‘What will be changed by this technology apart from the thing it is intended to affect? What will this technology break or stop working?’
Ask ‘who wants the technology to be a thing and whose interests does it serve first?’
And if you work for the NHS ask ‘how do we know this is safe? How do we know that its wanted? How do we know it won’t increase inequalities?’
If you ask these questions, as people with in depth on the ground knowledge, the best way to think about it is playing a game of ‘what if?’ Treat the digital thing as something that will be there in real people’s lives and real situations. Don’t fall into cynicism, even about things you have every right to be cynical about because cynics stop asking questions and start making statements ‘that’ll never work’ ‘our service users won’t like it’ ‘nothing can replace face-to-face’ ‘this is all about just saving money’.
All of those are ways of just stopping dead the real conversation that needs to happen to make sure that people with mental health difficulties aren’t left behind in a world of technology that doesn’t serve their needs.
Assume that everything is possible via technology. Allow yourself to play the ‘what if’ game freely. Look at bits of technology you see and ask what if we adapted that to mental health. Ask yourself questions like ‘what if my service could had an app that coordinated the people needed to admit someone to hospital?’; ‘what if our service developed a therapy app aimed specifically at people with drugs and alcohol problems?’ ‘What would a digital support service look like for people who’ve we’ve decide have personality disorders?’ ‘What if we made something where people could record their experience of tapering from medication?’ ‘What if we checked in daily with someone who had just been discharged via text or chat?’
Most of the ideas you come up with will falter or turn out to some awful implications when you think them through, but the objective is to try out possible futures for size. Most of the time it won’t be the technology that makes something unworkable. It’ll be the human things it makes happen or the things that might need to change for it to work. Often, tech won’t even be the answer. An app to order someone to post you a twix while you are an inpatient would be an awful solution to fancying a twix. But play the game of ‘what if?’ whenever you get the chance and the future will begin to open like a flower.
Right now, bad plans are being made
It’s up to people who understand mental health to be the voice of what people living with mental health difficulties need and to assist and support where ever possible people with mental health difficulties to be the leading voice in defining what that future should be.
Out there, right now, people with more power than us will be cutting deals and hatching plans for what technology should be implemented in mental health.
Delivering public services is a political act. The shape of public services and how they feel are defined by political and historical realities. The decision of who pays tax, what taxes they pay, upon whom those taxes are spent and who it is that does the work is political. The ‘social good’ is not an uncontested idea. The culture of Silicon Valley is increasing looking, in the American phraseology, like a dumpster fire. Libertarian ideas run riot, with the very ideas that our public services in the UK are founded upon are seen as a deadly infringement of the rights of the individual to choice. Low tax, low regulation is the mantra. The ethics of digital creators, investors and developers may run contrary to our core purposes and ethics in running public services such as health and care. Sometimes it’s hard to distinguish them from Bond villains.
Big companies talking to big bosses. It’s like Gods speaking to each other over the heads of us mere mortals. Technology will sweep in, solve all the problems, be seamless they promise. The debate is like first world war generals discussing a map of the Somme while the rest of us are shivering in the mud, ducking bullets and trying not to die.
There’s another digital divide is opening between the generally healthy, well-scrubbed, well off people who make tech and the rest of us. There’s a gazillion mood tracking apps and a gazillion mindfulness apps because people can make them without needing to consult anyone who knows anything about mental health and because there is a market for them amongst people who are generally doing OK apart from a few uncomfortable wrinkles. Apps and digital services that might really help the complicated, glorious, troubled and in need who live with longer term or more serious mental ill-health and distress are far thinner on the ground because the needs of those people are considered too complex, too difficult and ultimately not lucrative enough to take the risk. The real widening divide is between the digital haves and the digital have nots in terms of services, devices and applications that meet their needs.
If we don’t get involved, the future won’t meet our needs at all and even by trying to do the best by people with mental health difficulties, we’ll collectively, by accident, let them down by allowing a future that’s even further from what people really need to happen.
Ask yourself: are my feelings about tech in mental health selfish or generous?
When it comes to digital technology, you the people who might recommend it or integrate it into your ways of working are users, as are the people who experience mental health difficulties whom we actually, in the end, want to have better lives. If neither of those voices is strong in defining its needs and defining what needs to be solved, the tech will be designed by committees of people who have never spent an awful, terrible night unsure whether they’ll make it through to morning or never been there for someone who is feeling like their life is ending or the world is becoming unreal and terrifying.
One of the challenges for professionals thinking about digital technology in mental health is that it makes us feel out of our depth. It challenges us with the potential to make our workplace practice unfamiliar. We also have to be careful that our thinking about technology isn’t really just a statement of our own preferences and our own fears about ourselves and our own futures.
At the same time as trusts and local authorities were preemptively trying to slash their budgets (2008–2010) and then government were reorganising and cutting (or not cutting depending on your political viewpoint), this flower of digital possibility was blooming. For many, the idea of efficiency savings, of working smarter, of pushing for better outcomes, of doing more for less become a codeword for cuts, erosion of duties, unmet need and greater job insecurity. The choice looked like either maintaining everything that we had before, health capacity being about warm human bodies or about embracing the digital future and having empty rooms filled with bleeping screens. Digital transformation looked like a code word for ‘loss of jobs’. People still ask: why are you farting on with technology and spending all that money instead of employing more nurses or other frontline staff?
The easiest way to avoid the implications of tech is to do everything you can to avoid using it. Or, to cross our arms and refuse to even be involved in the shaping of this future. It can be tempting as professionals to see your own existence and practice as being the direct expression of people’s mental health need. If we disappear or if what we do changes, we think, then need will go unmet. We are the care people need, we think.
New technology feels like magic, something arcane, something only controlled by other people, not us. It feels like something built by people very different to us. We have spent years training to be what we are. We’ve spent time and money and blood and sweat and tears building our professional toolkit; turning ourselves into useful tools. Our job is what we spend most of our time doing. We worry about having that professional competency undermined or taken away from us. We ultimately worry that it won’t be people like us, with our skills, who will make up the workforce of the future. So we opt-out of the discussion, convinced that if we just blank the eager tech people then eventually they’ll get bored and go away.
I’m lucky in my work in that I do live social media for mental health events, so I get to hear a lot of fascinating presentations about lots of cutting edge things. I was up in Glasgow for the International Forum on Quality and Safety in Healthcare, and got to cover a presentation that included NHS Highlands NHS Near Me Service. Up in the HIghlands they have two challenges beyond the ongoing challenge of making ends meet: they have an ageing population and a very dispersed one. It’s all islands, small towns and villages and people hours and hours and trains boats and planes away from health services.
They wanted to explore telehealth; online consultations and video calls. But they also were aware that the people who most needed these might not be the people most comfortable with the technology, and as importantly, how the technology felt. So they did lots of coproduction type workshops and they came up with what feels to me the most mundane and most amazing solution. Instead of everything feeling all automated, they introduced a digital receptionist. When you first call in, you talk to an actual receptionist by video first. This moves the technology from feeling wipe clean and unfamiliar and robotic to feeling as much as possible like actually going to an appointment in person.
Yes, it’s not the same as being there in person, but the alternative for many patients is not being there at all, or sitting on a boat then driving through some amazing scenery and then getting there for their consultation then driving back through amazing scenery then getting back on a boat. Or waiting until a healthcare professional can make the same journey but in reverse. For me, that’s an amazing example of what happens when you keep the needs of the people who have the problem at the heart of the experience. It’s a million miles away from the industrialised model of GP at Hand, that looks to deliver at scale industrialised care and to stick cash in the back pocket of a tech company.
But if you’re honest, if I’d described it as video consultations for hard to reach populations, how many of you would have had the gut reaction: that’s never going to be a replacement for face-to-face meeting? Who wants to have a video call with someone in a call centre? Championing the needs of people who face difficulties and challenges is vital to make sure that technology isn’t just made to suit business, managers and numbers in spreadsheets.
In every bit of work I’ve done with young people around mental health I hear echoed the same frustration I hear from adults who experience mental health difficulties: why is it so difficult to communicate with mental health services? From crisis teams to CAMHS it’s the same thing: all I want is a way that suits me to safely communicate with the people supposed to be providing me care People who love using the telephone don’t realise how privileged they are.
Digital isn’t an answer for everything. Knowing what it isn’t an answer for is part of the job of ‘what if?’
You can’t deliver digital service to people who don’t have digital devices and access to the internet. The digital divide is a real thing, as we’re seeing in the ways that the ill advised, arguably cruel and disastrous roll out of Universal Credit is showing. But my answer to that is ‘give everyone a device if its vital for their care’. The world is awash with perfectly serviceable digital devices gathering dust. Work out how to get them to people if that’s what’s needed. If you don’t think digital things will work for a group of people: check with them. You might well be surprised. Mobile phones with internet connections have made the complexion of this question very different to the situation a decade ago.
Without voices and actions that try to find ways that digital technologies can help those who experience mental health difficulties; the possible ways that people’s lives might be better will just turn into a load of bollocks that no one likes, everyone complains about with workarounds that take longer than the thing it replaced and everyone deletes whenever they get the chance. Face to face contact is vital in mental health. Think about how digital might make that better, more useful, more accessible. Get these tech discussions on the agenda, either institutionally or informally over coffee and cake. Talk to people. Look for problems that aren’t being solved.
Cynicism kills hope. It’s where we refuse the job of making the future different to now. And cynicism isn’t the same as health scepticism. It’s a way of staying on the sidelines so you can feel righteous correctness when things turn out not to work. I bloody love technology because I bloody love people.
The probable future is the one that happens if we don’t change anything. The possible future is any of the ones we can imagine based on something changing now. The preferred future is the future we’d like to see.
To make the future you need to start now. Get asking those two big questions: maximum autonomy and easiest access to care: ‘What technology could increase the level of autonomy and freedom people with mental health difficulties have within their lives?’ and ‘What technology might increase the speed, ease or convenience of people who experience mental health difficulties in accessing the quality and quantity of care, support and treatment that they need?’
Start today. It will be a very empty victory to be able to say in a decade’s time: ‘See, I told you the future would be shit.’
@markoneinfour
