Engaging Patient Perspective

In 2014 I was commissioned by Professor Helen Dawes of the Movement Science Group at Oxford Brookes University to assist her team and partners in devising how to engage patient perspective in the creation of a new rehabilitation feedback tool for survivors of Traumatic Brain Injury (TBI). The project was a small part of the huge CENTER-TBI project funded by the EU and composing over 120 partners in 27 different countries.

The team wished to create a tool that would both generate useful data for clinicians and researchers as well as being useful to the survivors themselves. I was asked to help devise a strategy for engaging patient perspective and exploring its potential for the researchers who would create the tool. To a degree this was a matter of introducing the concept and some processes associated with user experience (UX) into a medical context. Whilst it might be assumed that this would be a natural fit, it was shocking to discover how alien the concept actually is of engaging patients in designing the process for monitoring and evaluating their own condition. It seems that it is a much more standard practice to ‘design out’ patients from the business of gathering objective data about their condition in case they contaminate it in some subjective way.

What I found exciting about this project was its leader’s desire to do something different, to approach the problem of gathering data about survivors’ experiences of rehabilitation in a more nuanced and engaged way, whilst still aiming to acquire ‘clean’ data that could be used by clinicians. For this to be the case we would have to negotiate a space that the tool could occupy which would satisfy the motivations of clinical researchers at the same time as offering some return that could engage the ongoing motivation of a TBI survivor to use it to regularly contribute data.

Despite the vast scale of the CENTER-TBI project as a whole (around €29m) the bulk of the funding is targeted at acute care, with around just 1% associated with rehabilitation. This project was part of that tiny fraction and consequently very limited, with my involvement being one of the smallest parts. To use this resource effectively and impart human centred design principles into a development team unfamiliar with the practice I had to devise a method of engagement that would highlight the issues and problems of not engaging survivors in the design process, so that the development team would naturally arrive at an understanding of their own; so that they would appreciate the value of actively engaging users in planning the design of the tool to avoid unnecessary pitfalls and respond to the capabilities and capacities of the people intended to both use the tool and benefit from it in some way.

The process I devised involved facilitating an initial co-discovery workshop for project team members (clinicians and researchers), followed by a co-design workshop matching team members with people with TBI at a local Headway centre in Oxford.

The first day-long workshop took place at Oxford Brooke’s in April 2014. I had invited a colleague, David Sinden, to co-facilitate the workshop with me. David is a photographer and artist, as well as an experienced media producer and curator – more specifically he has direct experience of surviving a traumatic brain injury himself, having suffered a sub-arachnoid haemorrhage in 2002. We had worked together in the early 2000s and I knew that David would bring a unique understanding not only of the issues facing a TBI survivor, but would be able to do so within the context of the needs and requirements of media production. Also part of the project team was Dr Lizzie Coles-Kemp of the Information Security Group at Royal Holloway, with whom I previously collaborated on two other engagement projects.

Over the course of the day we explored the varying motivations of the different actors (TBI survivors, clinicians, researchers etc) that would need to be considered as well as their capabilities and capacities to engage with or use the tool. We tried to scope out what the benefits of using such a tool would be for the different actors in the system, and how this could inform the design process;

I felt at the end and that we had worked towards a tool that has the potential to be useful not only after traumatic brain injury but also after any acute onset disabling condition and indeed probably in all disabling conditions. … In terms of process, I felt that the meeting was well run with an appropriate balance between allowing conversations to continue and thoughts to develop, and moving on to the next stage. [participant DW]

The workshop was subsequently documented in a bookleteer book, including post event feedback from the participants, to enable its results to be more widely shared. The book included visual annotations of the day’s discussions drawn by Proboscis associate, Mandy Tang.

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The second workshop took place in late July at the Headway Oxford centre. I had devised a simple paper-based tool for the participants (five TBI survivors) to map their own rehabilitation journeys through a creative process, assisted by Headway volunteers and project team members. The aim of the workshop was to reveal the nature of the complexity and challenges for user engagement in the design of a rehabilitation tool by actually doing the task itself in a paper-prototyping fashion. Two of the Oxford Brooke’s development team took part and were able to experience first hand for themselves the kinds of capabilities and capacities that TBI survivors cope with.

The exercise was designed to be a simple as possible, asking the participants to just use words and simple drawing techniques to describe aspects of their rehabilitation journey. Yet not one of them felt confident enough to do the writing or drawing themselves and relied on a volunteer to help them. The group completed the tasks individually, yet openly discussed the questions and helped each other ‘remember’ things. The value of mutual support in recalling and recording individual experiences was firmly underlined. The workshop revealed to the researchers some of the considerable engagement and user experience issues which they would have to address before any tool – digital or analogue – could be used in the field.

For myself it was inspiring that the TBI survivors at the workshop found the exercise to be useful in itself, and could see the value in repeating it on a regular basis – both as a bonding exercise with other survivors and to help recognise and understand patterns in their own lives. Unfortunately I have been unable to find additional funding or resources to enable me to develop the paper-based TBI engagement tool further. I hope to find an opportunity in the not too distant future to create a version of this tool that could be used by TBI survivor groups themselves as part of their rehabilitation process, recording and reflecting on their experiences, helping each other discover or keep track of patterns that affect them.