The pandemic turned digital mental health from the understudy to the star…
…but the notices were lacking and the auditorium mostly empty
The following is the text of a short talk given by Mark Brown as part of the panel discussion ‘The Digital Transformation of Mental Health’ as part of Leeds Digital Festival 2021 on Thursday 30th September 2021.
We’ve been through the largest ever field test of digital technology. The imposition of restrictions to prevent the transmission of Covid-19 upon Leeds, the UK and large parts of the world forced to the fore the pressing question ‘what can we do to keep things going when it’s not advisable to be together in person?’
Suddenly the debates of 70 years about what could be automated, what could be digitised and what could be done at distance took on new, pressing and surprising relevance. This should have been a time where the vital nature of digital mental health came into focus and ignited a frantic and shiny burst of collaboration and innovation, as apps and digital services and devices stepped up to the challenges presented and showed the world exactly what they’d been trying to explain all of these years.
Well, you’d think. What has actually happened is something that’s a bit different. I think what we’ve found is what happens when what is seen as a bolt-on or a steam valve to reduce pressure on ‘proper services’ suddenly becomes ‘the proper service’. In a massive test of digital maturity, it turns out that the NHS and other public services in the Uk are basically just gangly teenagers; really good at doing digital stuff they’re good at but all adrift when that has to interface with a much more complicated and difficult world.
The question we actually got to see a kind of answer to was ‘what if most mental health stuff had to be delivered remotely?’ Not the typical questions of digital mental health, which are ‘do the people who use our app or service like our app or service?’ or ‘how profitable might this service be?’. Instead we got to see that digital mental health care in the round, rather than digital mental health service as individual interactions, was and is a long way out of our grasp. The pandemic turned digital mental health from the understudy to the star. But the notices aren’t what they could have been, and most of the seats in the auditorium remained empty.
One thing that was fascinating for me was that we got to do our first major field test as a society of video-conferencing, video consulting and video service delivery. What we learned was that individual preference and individual situation very much influenced that interaction. It was often assumed that video consultation and video based therapy was the holy grail of digital service provision. It turns out, in fact, that such interactions bring with them their own sets of issues related to the design of such tools themselves. It amazed me that the social norm for video-on Zoom or Teams calls was established so quickly, with so little effort put into exploring other means of achieving similar ends. I wonder exactly how many forms of contact from services people living with distress, ill-health and trauma actually receive in lieu of whatever face to face service they may have expected otherwise.
For me, the pandemic has underlined the difference between treatment and care, teletherapy and telecare. Digital mental health has often focused on four things:
- The provision of knowledge or information
- The provision of tools for self help, self care and the maintenance of your own mental health
- Teletherapy, either automated or otherwise
One of the consistent mantras of the pandemic has been ‘if the news is too much, just don’t watch it’. Similar advice is given for social media. This poses a significant challenge, however, when the primary way that health services have to communicate to the public is through the media. The Reuters Institute, University of Oxford, published a paper titled ‘Communications in the coronavirus crisis: lessons for the second wave’, where they found that significant numbers of people had noped out of the news all together. This created significant inequalities, with people who had done so increasingly ‘out of touch’ with changes in policy and new knowledge about covid-19. Some of these people were decoupling from all media, social media included, but others weren’t.
If the media is the main way that messages around mental health, including messages about the availability of services and support are conveyed; then another point of contact between individuals and health support is lost; this coming at a time where face to face mental health support was less available. Your digital tool or service potentially isn’t even visible to the people you might hope will benefit most from it. If people were losing touch with those around them, those that in theory provided care and support for them and then also the broader media, what chance of a digital intervention getting to them?
In February 2021, Becky Inkster and colleagues published “Early Warning Signs of a Mental Health Tsunami: A Coordinated Response to Gather Initial Data Insights From Multiple Digital Services Providers”, a paper which sought to capture insights from a range of providers of digital mental health related services across the world during the first phase of the pandemic. What they found, unsurprisingly, was that such private companies, charities and social enterprises across the world saw an increase in use of their services. As coauthor and fellow panelist Liz Ashall-Payne, said: “We’ve watched the use of mental health apps increase by over 200% during lockdown.”
What for me was stark was the survivorship bias of digital health tools. Our jump into a zoom fueled world showed that, actually, even your colleagues didn’t have reliable internet connections at home, or a webcam that didn’t have the resolution of a potato. When the bolt-on or alternative to your service becomes the service it shows up how precarious the path to the use of a digital service actually is. Someone has to find it or be made aware of it; needs to be shown how it is relevant to their lives and needs; needs the equipment and the data to be able to use it and needs to find something in it that makes their life better. I don’t know if you’ve tried googling a problem you’re having with your mental health recently, but you’ll find an awful lot of rubbish before you find something of use and something you feel confident is worth paying for.
Where digital is one of the few options for exploring the provision of services or support safely, as during a pandemic, then who those services don’t help, can’t help and didn’t reach is a vital area for inquiry.
I was on a panel at the NHS Providers conference last year and said that I felt like the Westminster government’s response to covid-19 was to undertake the minimum of transformation during the pandemic for fear of spending money that didn’t need to be spent if things all blew over. I feel like digital mental health (and other public services) as far as UK government spending stands has been about doing the minimum, not providing the maximum possible. There has been nothing comparable to the fevered and intense collaboration that took place to develop a vaccine for covid-19 and roll it out and far too much waiting it out until things ‘get back to normal’. The thing is, normal might never come back and everyone who needed something they weren’t getting is now two years deeper into that need than they were before.
Telecare has been nowhere during the pandemic. I worked with the National Survivor User Network throughout the pandemic. NSUN managed to get some of the covid recovery from the government in 2020 and turned that into a small grants programme for user-led groups and organisations who wanted to do something to support people with mental health needs during the long months of lockdown and beyond. Over and away the thing they wanted most was small grants to help them keep in touch with each other and the people they were supporting. Zoom licenses, tablets, pay-as-you-go data to distribute, better webcams. Mutual aid groups and peer groups stepped into roles providing day-to-day support and kinship.
A research report from the COVID-19 Longitudinal Health and Wellbeing National Core study, published today found that people whose survey responses before the pandemic suggested higher levels of anxiety and depression symptoms were 24% more likely to have had delays to medical procedures, 12% more likely to lose their job, and 33% more likely to have had disruption to prescriptions or medication during the first eight to 10 months of the pandemic than those with average levels of anxiety and depression symptoms.
For people already ‘within’ services who experience greater mental ill-health, distress or trauma, the crisis team advice of ‘have a cup of tea or a bath’ and ‘go to A+E if it’s bad’ still remained in place.
The transformation of digital mental health didn’t go as far as actually being able to support people who really needed it.
We’ve all had different pandemics. We now know exactly what might happen if we did the most unethical experiment ever: what might happen if we just stopped providing a whole range of services people rely upon. To build a more resilient future, digital mental health needs to learn from where it failed during the pandemic. It needs to learn how to be in people’s lives, not just researcher’s work plans, venture capitalist’s portfolios and the slide decks of people like me giving little talks like this.
My sister died in a care home at the beginning of this year. I’d not seen her since her birthday in February 2020. I didn’t get to see her before she died. I didn’t get to see her body afterwards. We didn’t get to have her funeral for nearly three months afterwards. We didn’t get to scatter her ashes until last month. The last thing I got to say to her was a whatsapp voice message telling her that she was loved.
I’ve just had my third week of IAPT (Improving Access to Psychological Therapies) provided grief counselling. By phone. I do my questionnaires online, correspond with my counsellor via email. Last week I had my session sitting on a mossy tree in a nature reserve on the south coast, hiding from the wind as it came in off the sea. For me, this is helping. I’m lucky.
It turns out that our systems in the Uk weren’t really that resilient to disruption. Death, like crisis, always comes too soon and when we are not ready.
Digital mental health wasn’t ready this time. There’s a fair chance that ‘building back better’ will try to put a nail in its coffin forever. It needs to be what might save someone next time if it couldn’t be that this time. We need to know what was good, what was bad and, most importantly ‘why’.
Transformation means change. I’m not who I was before the pandemic began and digital health owes to everyone who might need help and support in future to not be the same either. Digital mental health can’t stay a gangly teenager forever.
The pandemic has transformed us. Digital mental health transformation is going to need to transform, too.