An Interview on Research with Brain in Hand

As BATA moves forward with plans to consider the role of research in our sector, BATA member, Brain in Hand (BiH), sat down with BATA’s CEO to discuss some of BiH’s recent research and share insights.

Brain in Hand is a personalised support system that combines the best of digital tools and human support to help users manage overwhelm, reduce anxiety and build motivation. Practical human support and digital tools help users to think about what they need to plan for the things they find difficult. It can help organise their time, remember things, deal with difficult situations, and better understand emotions. Strategies are all accessed on their phone, when they need them most. The system is used within education, workplace, and health and social care settings.

Helen Guyatt, Head of Research, Evaluation and Insight at BiH, gives context to the value of research in disability and assistive technology, discusses the need for further research, and hints at some of BiH’s plans for the future.

Thanks for joining me, Helen. To start with, could you explain to our readers why research is so important for assistive technology?

Well, in short, I think it’s absolutely critical that we’re able to show that assistive technology does in fact work. If we want to use technology to enable and empower people – especially people who might be vulnerable – we need to be confident that solutions are reliable, effective, and safe.

Evidence standards for digital support are still relatively new, but there are various things beginning to emerge. The Digital Technology Assessment Criteria (DTAC), for example, is an NHS X programme designed to ensure clinical safety, data protection, and accessibility – we recently applied for this and were granted the accreditation, which we hope will really help us access healthcare markets. So this is one aspect of research: gathering evidence to show we’re compliant with frameworks and standards, which should give users and purchasers confidence that we’re doing things in the right way. Particularly where public money is being used to purchase AT, there’s even more responsibility on us as a supplier to make sure that’s money well spent.

It's not just about ticking boxes, though. We invest in learning as much as we can about how our product works, how people really use it, and the kind of outcomes it achieves so we can be confident we’re doing what we aim to do. If we didn’t do that, we’d just be guessing that our system is helping, and that’s not good enough for us. We want to know that our goal of improving people’s quality of life is really being met. And, of course, understanding as much as we can helps us keep improving what we do.

Could you explain what we actually mean by research? What is it?

Essentially, when we talk about doing research, we’re talking about systematically investigating something in order to find out what the facts are, test hypotheses, and form useful conclusions. Doing good research is about having a process that gives you the most reliable and accurate results, so research methodology is often concerned with ensuring we eliminate biases, collect enough data that we can be sure the results aren’t just a one-off, and carefully consider whether there are alternative explanations for a particular outcome. In short, we want to be confident that we can say, for example, ‘Brain in Hand helps people manage anxiety’ and know that it really is Brain in Hand making the difference.

It's worth noting that the word ‘research’ has something of a bad reputation among the autistic community (and other groups, particularly disabled people, but autistic people are a big part of our focus at BiH). Historically, ‘research’ when it comes to autistic people has very often meant trying to make people ‘less autistic’ through behavioural, medical, or sometimes genetic study and intervention. Even as recently as 2021, we’ve seen huge backlash to projects that looked to collect biological information about autistic people. There’s a lot of fear about what people might do with that data, and a lot of resentment that studies are looking at autistic people in a very medical, othering way.

We aim to do research that matters for those who would use our system, particularly autistic people. We don’t want to just do work about them; we want to work with them in co-production, developing meaningful insights together and acting on them. What we want to find out is how we can help people live the lives they want to live, managing the things that prevent them from achieving that; we absolutely don’t want to change who they are. Brain in Hand will, we hope, continue to make a strong positive impact thanks to research that really understands what our users need, rather than assuming we know what’s best for them.

Our hope is that by doing things this way, we’ll build trust with our end users and the wider autistic community. We need people to trust that we genuinely want to get things right with them so we can involve them in co-production.

Good research has to be directed. You have to know what you’re aiming to achieve; you can’t just go collecting as much data as you can and hope that’ll solve your problems.

So how does Brain in Hand approach research?

We’re fortunate that our CEO, Dr Louise Morpeth, comes from a research background, so she’s very heavily invested in making sure we do research well.

Research has been part of what we do from the start. In our very early days, some invaluable studies were conducted to help us understand whether the Brain in Hand concept would actually work. (I say they ‘were conducted’ rather than ‘we conducted them’ deliberately: having a reputable, independent third party conduct studies is generally more credible.) Devon Partnership Trust and the National Autistic Society undertook studies with autistic adults and students to see whether people felt it had a positive impact on their lives, and also whether it could help people reduce their reliance on other forms of support in a safe and empowering way.

More recently, an independent clinical study looked at the impact of Brain in Hand on quality of life for autistic people – both those who already have formal diagnoses and those waiting for an autism assessment, since this is a time when many people get no support at all. That study did find that we were able to significantly improve quality of life, help with managing anxiety, and reduce self-injurious behaviour, and has recently been published in the British Journal of Psychiatry Open. We’re extremely proud that we have something like this behind us; we’re one of a small number of digital solutions with a published, peer-reviewed clinical study showing that what we do is effective.

It's not all about studying the clinical outcomes, though. Again, it’s about being directed: what do we really want to know? What’s important to our end users – and, of course, to the organisations that commission BiH? For this reason, we collect a lot of anecdotal evidence directly from our users about how they use Brain in Hand: how it’s helped, what they like about it, what they would improve. This feeds straight into our development pipeline, so insights from our users directly informs how we shape our product. We’re also doing a lot of work with our organisational partners – those who purchase BiH to use in their services – to establish a really strong methodology for demonstrating that technology can be a worthwhile investment both in terms of delivering strong outcomes and creating savings for the public purse.

I recently spoke at the National Association of Disability Practitioners (NADP) conference about this very topic in a higher education context. I won’t repeat the whole thing here, but in short, I firmly believe that providing assistive technology to help students manage their needs could afford universities huge benefits by reducing the rates of students leaving without finishing their courses, keeping them in their studies and thus preventing big financial losses to the universities. It sometimes feels a bit of a shame that we have to talk about these things in the context of how much money they might save, but when that’s money that could be spent on high-quality tuition or other kinds of support, it’s a powerful point.

Are there any areas of AT you think haven’t been researched enough to date?

I think what often goes under the radar is the more holistic and long-term view. Can we, for example, show that implementing a bit of technological support for someone might have a knock-on effect in reducing how often they need to engage with emergency services? If we can reduce dependence on services in a safe and appropriate way and prevent things from escalating into crisis situations, this could be a huge benefit not just for the end user but for their local healthcare system (not least in freeing up services to better help those for whom assistive technology may not be the best option) and for those around the person who would usually have to go through the stress of navigating these situations with them.

Or can we show that providing support to university students could be of benefit to local health and social care, if it means they don’t need to use GP or inpatient services?

These are all things we’re trying to work out how to show; it’s difficult to prove, but I think it’s an important piece of the puzzle.

I also think we perhaps don’t acknowledge enough that a ‘good’ outcome might look different for each individual. We need to understand the diversity of our user base – that includes the intersectionality of different identities and demographic factors, of course, but it also means being aware that even those with the same diagnoses have different needs, situations, and wants. This understanding is absolutely key to our research approach. For some people, the best possible outcome might be to use some digital support for six months until they’ve put some good routines in place, and then be able to stop using it and still be well without it. For others, it might be more of a life-long thing, using technology to help maintain their own wellbeing and prevent crises. What constitutes the best support for someone will change over time: we find Brain in Hand works particularly well in transition scenarios, so progressing from school to university or to work, moving house, changing jobs, a change in their residential or support circumstances. We’d like to better understand how we can best support people at all of those stages over time, tailoring their support to their situation and letting them maintain their routines and strategies throughout their whole life journey with us.

Finally, what are your plans for the near future?

We’re continually looking at novel ways of understanding and evaluating the impact of our work; we’re just about to start a single case experimental study (SCED) with the University of Exeter, which will incorporate repeated measurements looking at the progress of each individual over time. We hope this will help us identify whether any changes can actually be attributed to using Brain in Hand. I’m excited about this because it’s not a traditional randomised control trial (RCT), which are often large, expensive, and full of ethical issues to navigate – I’ve talked elsewhere about moving beyond the ‘gold standard’ of RCTs. This study will still use randomisation over time to capture meaningful information, so I think it could be really useful for us in understanding how Brain in Hand effects change.

We think it won’t be long before some sectors that use AT, particularly health and social care, make it mandatory that any assistive technology or digital solution is compliant with standards and has a solid foundation of research and evidence to show it really works. Understandably, it’s difficult for a purchaser to justify implementing a tool if they don’t have a robust way of knowing that it does what it claims to do. So I see research becoming even more important to us in the near future. To me, that’s very exciting.

To find out more about Brain in Hand visit their website.

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Contact: support@braininhand.co.uk