Tag Archives: traumatic brain injury

Mapping Rehab Journeys


Back in the summer of 2014 I devised a simple paper-based tool to help brain injury survivors map their rehabilitation journeys through a gentle creative process. It was part of the work I did for the Movement Science Research group at Oxford Brooke’s University – helping them to understand how to create a patient-centric digital rehabilitation monitoring tool. Having tested it successfully with a group of brain injury survivors in a workshop at Headway Oxford, it was frustrating not to be able to find a way to develop my ideas into a simple, low cost and flexible tool that could be used by brain injury survivors to periodically record their experiences of rehabilitation.

Since then I have been mostly engaged on a project co-designing a simple method and tools (based around bookleteer.com) for documenting Traditional Knowledge with villagers living in the jungle in Papua New Guinea, as well as with my work on data manifestation. As the notebooks for documenting knowledge have evolved, I have seen how they enable people to capture things that they value in ways that help them communicate and share that value further. Reflecting on this over the past few months, it made sense to think about adapting the ideas for the rehab journey tool into a booklet – utilising the simplicity, low cost and ease of use of the bookleteer format, something requiring no immediate investment beyond my time.

I was also inspired to do this having seen the excellent Patient booklet co-created by Grace Tillyard as part of her Breast Cancer Awareness project in Haiti. I have been providing a small bit of advice to Grace over the past year and half as she developed her programme, and we had talked about using the bookleteer booklet format as a simple way for people to record their experience of cancer treatment and recovery, as well as providing them with information about the process and possible outcomes. Her use of bookleteer to create a powerful tool that can be used effectively in the complex socio-economic environment of a developing country is truly inspiring.

Having discussed my idea with my friend and colleague David Sinden, who co-facilitated one of the workshops in Oxford with me for the TBI project (and who has himself survived a brain injury), I have now created a draft notebook format to help people record their experiences of the rehabilitation journey. It develops on from the original worksheets, encouraging survivors to use both words and drawing to document how they feel about their journey of rehabilitation in the present moment. The prompts ask for feelings related to time, progress, fluctuation and speed of rehab, as well as an overall mapping of the journey itself.

As with the notebooks for documenting Traditional Knowledge, I felt that it was important for people to be able to personalise their notebooks by putting a photo on the front cover. This might also serve as a visual reminder of how someone was feeling at the time, as well as how they look (or, for instance, include the face of someone who might be helping them fill out the book, such as a carer or friend). This can be easily done using the same sort of low cost kit we use when in the jungle of PNG – a basic cameraphone and Zink photo printer (e.g. the Polaroid Zip printer or Snap camera/printer).

What might the benefit be?
When I ran the rehab journey mapping workshop with five brain injury survivors at Oxford Headway in August 2014, they all became very invested in the process and were vocal in expressing their enjoyment of the task. It was highly social, with a lot of mutual support (especially in remembering things for each other) and free-flowing conversation which in turn provoked considerable self-reflection. I acted as the scribe for one of the survivors, assisting with writing and drawing for her. At the end of the workshop she thanked me and said that this exercise had been the first time anyone had sat down with her and listened to her describe her experiences since she had suffered a stroke about 12 years before. I asked the group if they thought it would be worth doing the exercise again, perhaps on a fairly regular basis (such as two or three time a year). They all agreed that it would be worthwhile, not least because it would give them a sense of how their feelings about their rehab journey change over time and this would give them a way to recall how they have felt at different times.

It is this aspect of self-observation that seems to hold a great deal of value in the process – not just for personal reflection, but also when discussing an ongoing rehab journey with the clinicians, physicians and other professionals and carers who are supporting survivors. Building up a collection of these observations over time could help reveal patterns that often evade us as we live in the moment. They are a form of data that could be useful for longitudinal analyses of the changes and adaptations experienced by people over prolonged periods of rehabilitation.  They offer the potential to collect and collate rich, qualitative information about how rehab is experienced by the survivor themself which could enhance other quantitative data already being collected as part of ongoing care and health management.

The draft notebook is available for anyone to try out in two sizes: Small (A6) and Large (A5). This is just a first step and is in need of feedback to both be improved, and built upon – as there are undoubtedly other ways and tools which could add to this. David and I will be collaborating on testing and extending the format as well as devising a practical process or methodology for both health professionals and peer groups of people experiencing rehabilitation to use it. We hope to have more news about this in the Autumn.

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.