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The importance of involving people in digital mental health research

Anja Hollowell

We are surrounded by digital products on a daily, if not hourly, basis. However, most of us rarely consider how these products were created. Most products are made by involving ‘end users’ – the people who will ultimately use the product in real life. This often happens during the prototype testing phase, but end users are rarely part of the development process from the get-go. This is ok if you are designing a video game or an app, but what if the product being developed is a treatment for mental health issues and there is a need to capture more nuanced experiences?

Research on digital mental health interventions is expanding at a rapid rate. At McPin, we have been thinking about the overlap between digital product development and service user involvement. We specialise in supporting research teams to integrate service users’ expertise into mental health research programmes, a process known as “patient and public involvement”. So, when we started working with psychologists and digital developers on a project called gameChange, we were interested in how these approaches overlapped.

Digital product development meets service user involvement

gameChange is a virtual reality (VR) therapy to help people with psychosis feel calm, confident, and in control in everyday social situations. It is based on the evidence that learning achieved in a virtual environment is also helpful in the real world – just like pilots learning to fly. So, learning how to deal with challenging situations in a virtual world – which can be done in a safe and controlled way, and supported by a virtual “coach” – will help with the management of similar situations in real life. This has worked for a previous study to help people with fear of heights.

People with experience of psychosis were involved throughout the gameChange development process. This was facilitated through a Lived Experience Advisory Panel (LEAP) and design workshops that involved service users as well as design experts at the Helen Hamlyn Centre (Royal College of Art). Service users informed which virtual scenarios would be included in the VR therapy (such as a GP surgery and a newsagent). They also worked on the script and helped decide who should deliver the therapy. This part of product development is sometimes called “user design”, and forms part of the process of “user development”.

Having people with relevant lived experience inform the design over several months was important. As Bev, a service user who was involved in the design workshops, put it, “not only were [the software programmers] knowing what would work, but they were hearing why and they were hearing personal anecdotes about why this situation was threatening or how it actually felt.”

This user design work culminated in the production of a prototype. By May 2019, this was ready to be tested. I am familiar with the concept of prototype testing or “user testing” as before joining McPin, I worked in IT. Part of my role involved software testing, a similar process to user testing. My task often involved finding faults in a near-finished product by stressing the system to find its Achilles heel. My instructions were: “here’s some software I made, please work out how to break it”. In doing so, most problems can be fixed before the software gets used by its intended audience.

Identifying flaws and finding solutions

In gameChange, user testing was integrated into user development. We asked people to identify flaws in the VR prototype. Some flaws were benign and straightforward, such as a coffee cup passing through a table. Others were complex and subjective, like the number of people near the user – which can cause anxiety for people who experience psychosis. Any feedback provided was used to develop an updated prototype. This was then subjected to another round of testing. The cycle continued until the therapy was ready for use by participants in a clinical trial. In total, there were more than 500 hours of input from service users throughout the user development and testing process.

This process allows us to work creatively and find solutions. As Bev pointed out: “It was set up in a way that got us thinking creatively and we had time to comment on each other’s ideas and then play with and develop them so that you’ve ended up with a really good output. Only service users know what really works and so it is important to have them involved in actually building it and shaping it as it goes along”. Indeed, service users shaped every aspect of the VR therapy.

If, say, service users had only been involved in the prototype testing phase, as is often the case with digital products, they would only see a prototype that had already been created. The influence that users might have had on the product would have been restricted. For us at McPin, this would be like tokenistic involvement in a research project, as opposed to meaningful involvement in planning and decision making. Some of these models and approaches have been described in a paper by Locock and Boaz (2019).

Value of collaborative relationships

Being involved from the outset of the therapy development meant that people built collaborative relationships with the developers and psychologists. On a human level, it is hard to voice criticisms of something which you have only had limited involvement in. Giving negative feedback on something that others have worked hard on can be uncomfortable without a close working relationship. As Bev put it, “It’s important to cultivate an environment where, if you’re asking for feedback, people feel able to give honest feedback”.

Collaboration leads to better products and better experiences for those involved. Digital mental health products aimed at service users cannot be designed without input from people with relevant lived experience. This must happen throughout, not just during the final ‘user testing’ phase. The process described above is not difficult to follow, but it requires patience, time, and an understanding of how to ask the right questions. In that respect, it is like any other work we do at McPin.


Anja Hollowell is a Senior Public Involvement in Research Officer at McPin.

Edited by Kathryn Watson and Dan Robotham. Special thanks to Naheen and Bev, who spoke to Anja about their experiences of being involved in the gameChange study.