Interview with Thomas Kabir and Humma Andleeb by Kathryn Watson
gameChange is a project to develop a virtual reality (VR) therapy to help people with psychosis who have difficulties with everyday social situations. Working on gameChange with the rest of the team at the University of Oxford and Oxford VR marked an exciting new venture for us at McPin but it has been challenging! Since the reach of VR into mental health is steadily growing, we want to share some of our learning from working with service users in the development or ‘pre-trial’ stage of this project. We hope that this might help if you’re planning to step into the world of researching virtual reality treatments to support people with mental health issues.
In this blog the term ‘user development’ encompasses user-influenced design and user testing. The term ‘user testing’ refers only to testing of the VR prototype.
1. Build collaborative relationships early
As with any mental health research, bringing the expertise of people with lived experience to VR studies is crucial. It produces work that is profoundly more meaningful and relevant, among many other things. This should be done in a collaborative way and at the earliest opportunity, before any key features of the work have been decided.
We’re pleased to say that this approach has been embraced on gameChange. Thomas Kabir is a co-applicant with lived experience on the funding bid, which means he had a key role in developing the study, the funding application and coordinating service user involvement. In addition, our peer researchers and involvement team have been working with service users, as part of user development, to influence the design of the VR therapy, to identify factors for successful implementation and to determine how best to monitor and interpret key outcomes.
2. Establish good communication
Bringing digital technology into mental health research involves taking on an additional partner, the software development team, alongside the research and service user involvement teams. It’s imperative to establish good working relationships and efficient communication channels between all parties from the beginning. To facilitate this, we recommend meeting as often as possible. In gameChange we had a mix of face to face meetings and video conferencing calls at least every two weeks. Naturally, meeting in person often works best.
3. Manage expectations
We learnt quickly that the digital sector works very differently to what we were familiar with in the mental health sector. It’s a fast-paced environment, which increasingly employs so-called ‘agile’ methods for software development. These approaches are more flexible and user-centred than traditional methods.
A common agile method consists of repeated and even simultaneous cycles of rapid programming or ‘sprints’, followed by immediate user testing and feedback. Traditional research methods are typically linear and sequential, with ‘user testing’ occurring at the end stages of the development process. Such contrasting ways of working produce markedly different expectations in terms of work culture, remit and time scales.
Therefore, the importance of investing time at the outset to understand each other’s ideas, timescales, concerns and expectations cannot be understated. Doing so will enable common goals and shared ways of working to be established.
4. Facilitate mutual sharing of perspectives
It should go without saying that bringing lived experience expertise to this type of work is essential. However, it is also crucial to consider the perspectives of the programmers. This can be facilitated by onsite shadowing and including them in meetings. The software programmers are generally in the best position to tell you what can and cannot be done. For example, in gameChange we found that making one change, such as the position of a virtual character, could often negatively affect something else in the programme.
5. Be prepared to adapt
VR therapy-based research is in its relative infancy. As such, we are still very much learning how best to help service users work with those in the digital sector in a research context. This demands flexibility and the ability to respond to change quickly.
For example, during software development, user testing is needed frequently and at short notice. Acquiring our own VR hardware meant that we could choose where and when to run these feedback sessions, which made them more accessible to service users.
In addition, service user development meetings need to cater for design input, such as environment layout, scenario selection and character scripting, as well as to conduct user testing. We suggest adopting a combined advisory and workshop-style approach and making allowances for extra time, space and resources. You could book two meeting rooms or one large room with a separator. This means that design discussions could take part in one section and user testing in the other.
6. Prioritise VR familiarisation at the beginning
Prior experience of VR is certainly not necessary for recruitment of service users to an advisory panel or workshop. However, ensuring that service users have some awareness of what VR is, what equipment is involved and what first-hand experience of VR is like should be a priority at the beginning of the study. This can be done by allowing people to try a couple of VR interventions during the first meeting.
7. Understand the technological parameters
For those of us outside the digital field, it can be difficult to understand what can and cannot be rendered in a 360-degree VR environment. Therefore, working with the programmers to clearly set out what is technically feasible will help service users make more meaningful and relevant suggestions during the design stage. For example, in gameChange we were told that it simply wasn’t possible for people to walk down a ‘virtual’ street. This is because the physical space that people would be using the therapy within will typically be two metres by two metres.
8. Provide safety and support
Developing a VR therapy to facilitate behaviour change can, like in gameChange, involve exposing people to situations in which they experience troubling thoughts. This enables users to test out their fearful beliefs and so, learn that these fears are unfounded or exaggerated. Doing this means that triggering some degree of psychological distress is necessary and expected. It is therefore crucial to do this in a safe and graded manner. Having said that, exposure to a VR environment may also trigger distress that is unintentional and unexpected. Therefore, it is essential that adequate staff support is provided at all service user workshops, regardless of what aspects of the VR therapy are being tested.
It is also important not to leave someone for too long in a virtual reality – even if they are really enjoying it. For one thing, the glare from VR headsets can give people headaches. In addition, we learnt that incorporating a ‘cool down’ period after VR therapy was helpful to allow some users to sufficiently reacclimatise to their surroundings. This cool down period included using other soothing programmes within the VR environment and debriefing with staff.
9. Reproduce actual treatment conditions
When planning user testing, it is important to account for the actual conditions in which people will experience the VR treatment in its real-world setting. Most people will never have tried VR before. Is the equipment acceptable? Can they easily use the controls to explore the program? Is the length of a treatment session tolerable?
To allow for this, recruit enough people so that some service users can remain ‘naïve’ to the VR therapy development process. They can then be called upon to provide feedback later on in the development process. The number of people needed for this naïve group will depend on the complexity of the VR therapy programme.
10. Establish a clear end development goal
Deciding when the VR prototype is sufficiently well designed to progress from the development to the trial stage is challenging. To aid this decision-making process, we strongly recommend defining a clear set of criteria during the early planning stages, which can subsequently be used to evaluate the prototype.
If you are creating a therapy designed to expose people to virtual environments they find stressful, this set of criteria will include a number of key environmental stressors. These stressors will need to be modified in a manner of increasing intensity. In gameChange, examples of these included noise levels and the proximity of characters to the user.
Which stressors to target will depend on many user-specific factors, including the mental health diagnosis being studied, symptoms, age, gender, race, familiarity with digital technology and accessibility needs. This is why a diverse mix of service users should be recruited.
And, of course, any decisions surrounding criteria identification and progression to the next stage should be made jointly.
Read more about McPin’s involvement in gameChange here.