Psychosis in an age of surveillance capitalism
Can an app help treat mental health issues?
Jan, 33, from Brighton, was working as a social media manager when she started to develop psychosis: a mental health state broadly characterised by a combination of hallucinations and delusions which alter a person’s waking reality, and which according to the charity Mind affects as many as 1 in 100 people in the UK.
The past few years have seen a radical and welcome improvement in mental health awareness with everyone from Little Mix to the Royal Family admitting to bouts of troubled mental health. But while discussions about anxiety and depression now take place everywhere from the Ted stage to the boardroom, admitting to psychosis remains taboo – even though 65 per cent of admissions to in-patient mental health services are for psychosis, with figures now on the rise. Between March and May of this year, police in Scotland have seen a 25 per cent increase in callouts to emergency mental health crises, according to the Scottish Herald, while Derbyshire Healthcare Trust has said that a regional surge in psychosis cases was directly linked to lockdown. Meanwhile, our technocratic modern life presents fierce new triggers.
While people can experience a one-off episode or “psychotic break” as Jan did – often triggered by a major life event such as birth or bereavement – psychosis is usually a symptom of a broader pathology such as bipolar disorder or schizophrenia. Though its causes are still a matter of scientific dispute, there is general consensus that genetic factors interact with environmental stressors such as sleep deprivation, drug use, and anxiety.
Surveillance capitalism has made billions out of commodifying our purchasing behaviour
For Jan, a period of family difficulties combined with extreme work stress tipped her over into a psychotic state. During “the Truman Show” that became her daily existence, she attempted to take her own life and was finally found by police wandering around a golf course in her pyjamas, believing that a field of sheep “were human spies in costumes”. Psychosis, says therapist and author Ivan Tyrrell, is “an illness of metaphor”, where anything from a missed call to a misplaced cup of coffee can assume a radically disproportionate significance to the sufferer.
Individual experience of psychosis tends to be idiosyncratic and ferociously personal. But – to a striking extent – the persecutory anxieties with which psychotics struggle are more alike than different. In many cases, for instance, they believe they have committed a crime for which they’ll be arrested, or have abused a child, both things Jan experienced during her episode.
In the past, those afflicted often insisted that they were being sent messages from television sets or radios; in our digital age, their successors face a similar dread. The belief that smartphones are sinister instruments of ill-intentioned communication or surveillance has become one its most common symptoms.
While now retired, Tyrrell still writes and lectures extensively about psychosis as a director of the Human Givens college, a London-based, PSA-accredited institute that has been training mental health professionals for more than twenty years. Tyrrell says that in the last few years of his practice he was confronted with an increasing number of cases involving smartphones and digital technology.
“People become paranoid about whatever is in the zeitgeist,” says psychiatrist Dr Sachin Shah, “Right now, that means spam emails telling people they are being watched, webcams and auto-prediction on smartphones.” While Shah is not convinced that smartphones are more problematic for users than other technology has been, he also says that research on the effect smartphones and predictive technologies – the way email can now suggest sentences for you to write, for example – are having on people with psychosis simply hasn’t yet been done.
Of course, in many ways those that complain they are being watched are quite right. As Silkie Carlo, Director of Big Brother Watch, a non-profit civil liberties organisation that campaigns for privacy says: “We have more surveillance today and as a Western democracy than any country of any political persuasion has in history.” Our smartphones are the principal enablers of this surveillance.
Radically limiting smartphone use is vital to the modern treatment of psychosis
While voice-activated assistants like Alexa have long interrupted our conversations, we now know that Amazon employees have been listening to the voice recordings captured by the devices, including during our most intimate moments. On Facebook, everything from targeted shopping ads, to political ads with “nudge” – the kind that swayed voters in the 2016 US election and were a tool in the arsenal of Cambridge Analytica – are influencing all our consequential decisions. “Surveillance Capitalism” as it has been monikered by the author Shoshana Zuboff in her landmark book, has made billions out of commodifying our behaviour.
As such, the triggers that convince a psychotic that the government is tracking their every move have never been greater, says psychotherapist Helena Lewis:
For most, being targeted by data and ads is an inconvenience, if not a strange one. But for people suffering from severe mental health issues, this can be incredibly overwhelming and can set off a series of triggers in the brain, heightening and enhancing existing paranoia, and can in some circumstances be a factor in triggering a breakdown.
The problem is the delusional significance that psychotics ascribe to this surveillance. Jan describes when she became unwell three years ago:
It started with me thinking that my boss was watching everything I was doing, but soon I was hearing voices in my head and replying to those voices via messages on my smartphone. At some point I thought there was a camera down the toilet, that everybody could see my private parts and was laughing at me. I also believed my phone and Sat Nav were tapped.
In the throes of paranoia, people with psychosis are far more likely to harm themselves than anyone else. Jan accused her father for “dobbing [her] in” for an unspecified crime. Jan eventually drove herself to a train station where she abandoned her phone and climbed down onto the tracks. “I just thought I had to end it. It’s terrifying thinking about it now, and so sad.”
It is for this reason that therapists like Helena Lewis say radically limiting smartphone use is vital to the modern treatment of psychosis. From sleep to physical exercise, phones interfere with all the things we need to do to maintain emotional stability and physical health. “If you have psychosis, or other mental health issues, exposing yourself to blue light before bed interrupts our brain patterns and disrupts messages preparing us for sleep. Over stimulation isn’t helpful in any case, and this paired with psychosis can cause major problems.”
Earlier intervention in psychosis could save the NHS £119 million over three years
Ironically, the answer to problems aggravated by technology is also often to be found in technology. Those researching this field believe that the smartphone, if correctly deployed, can be turned into a healing device. Professor Shon Lewis of the University of Manchester is one such researcher. In 2008, Professor Lewis had what he calls a “lightbulb moment” while looking at his iPhone and decided to create a real-time symptom-monitoring app, Clintouch, for those with psychosis. By sending alerts several times a day, it encouraged them to both record their moods by clicking on a range of smiley to non-smiley faces and to enter in the reason for the mood, and to take their medication. All of this data is uploaded to a secure central server where it can then be viewed by clinical teams. Over time, the mood data is spun into graphs that can be used to predict if patients are at their threshold of relapse while the app’s algorithms alert their clinicians.
Overall, it has been a success – of the 50 percent of people in trials who trusted it, 90 to 95 per cent continued to use it for three months or more with symptoms such as delusions, low mood and anxiety decreasing for most.
It’s clear that an app to help monitor psychosis would be of huge benefit to the NHS, where the key to caring for people with psychosis is early intervention.
Not only do cases that are treated early have a better chance of being isolated episodes, figures from the 2012 Schizophrenia Commission Report show that earlier intervention in psychosis could save the NHS £119 million over three years.
What’s more, in a parliamentary select committee debate of 2018, the MP Norman Lamb revealed that just 29 percent of those with psychosis receive the NICE-approved package of care – including medication, talking therapies and rehabilitation after their diagnosis – that many services do not offer past the age of 35.
Jan, who no longer takes medication and has not suffered a relapse, stresses that she doesn’t think her smartphone was the sole cause of her psychosis and would welcome a technological aide such as Clintouch. Nevertheless, she conceded that “someone who was in the throes of paranoia may not trust an app to support them.”
Professor Shon Lewis agrees that turning off predictive technologies that trigger fears about surveillance could go a long way in helping people manage the risk of psychosis: “With Clintouch we have relied on AI to help us predict who would best benefit from the app. But if you have a tendency for paranoia or experience an episode of psychosis, you may very well start to read sinister and spooky agencies into these technologies.”
Dr Sachin Shah believes it might be better for patients to face their triggers: “If you avoid what is causing you anxiety then you are not learning to rationalise it. Within a psychological framework it might be better to confront it and figure out what’s going on.”
But there is another issue: the security of the data being gathered.
Dr Kate Devlin is an academic at King’s College specialising in artificial intelligence who also happens to have bipolar disorder. Around 15 years ago, she experienced a single psychotic episode characterised by acute sensory overload and a uniquely disorientating auditory hallucination: the perception that nobody around her was speaking English. While Devlin says she would welcome a mood-monitoring app, she is particularly concerned about any technology that would collect information about sufferers:
The idea that private companies would have access to your mental health data is terrifying. In the hands of a private company, without your permission, you could find yourself privy to all kinds of decisions about you that you don’t have a stake in.
For Clintouch, the solution to ensuring that personal data can’t be exploited was to make the company that owns it, Afligo, a social enterprise. But given that there are dozens of unregulated mental health apps on the market, it’s clear that unscrupulous developers could create something similar “and market the data to the highest bidder,” says Professor Lewis.
For Robert Elliot Smith, author of Rage Inside the Machine and a long-time AI specialist, it is important to stress that AI simplifies and generalises about the complex realities of human beings, and human society, which are critical in humane patient care. In fact, says Smith, there will soon be “a two-tier system of care where the poor are merely treated with AI and the rich get access to a human who is aided by AI.”
While Smith thinks Big Tech is increasingly concerned with doing the right thing or at least to be seen to do so, “At the end of the day, they are corporations that have a responsibility to their shareholders – delivering shareholder value is their legal duty. How they balance that with social responsibility is possibly one of the most important current conversations.”
However, Ivan Tyrrell says in many ways the horse has already bolted: “Even if the government intervened or the tech companies agreed to modify their products it wouldn’t matter. At the end of the day, people are not going to give up their phones, psychosis or otherwise.”
While Professor Shon Lewis agrees that “people’s relationship with their phone is close and complex,” he has a significant note to add about it:
In psychotherapy we often talk about the ‘therapeutic alliance’. This concerns whether a particular treatment will help or not and depends on how close and trusting your relationship with it is. You can actually develop ‘therapeutic alliance’ with your phone, and many people trust their smartphones far more than they trust their doctors
Jan, who now focuses on leading a “calmer, quieter, less stressful life” but continues with her work in social media sees it differently: “I wouldn’t say I trust my smartphone more than a doctor. But doctors are always in such a rush and not always easy to talk to. I can imagine some people not believing a doctor could help them as much as a smartphone.”
But in a society of surveillance capitalism where every iota of our data is up for grabs, and where even just using our smartphones can negatively impact our mental health, leaning on this particular “therapeutic alliance” does not come without risk.
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