Tag Archives: engagement

Beyond Engagement

Last month I ran a workshop at the univerCities one-day conference on urban innovation and entrepreneurship organised by MA/MSc students from the urban design, sustainable cities and planning courses at Kings College London, LSE and UCL’s The Bartlett School. The event was billed as “a unique inter-university and cross-disciplinary conference on the topic of solving today’s urban challenges”, and featured panels  of speakers from a range of different backgrounds to address questions of equality and inclusivity in housing development; humanising the city though urban design; and trends and challenges in urban futures: citizen engagement, digital participation and tech innovation.

I was asked to devise a workshop for the afternoon session to bring focus on engagement and the future in urban design and planning. I decided to adapt the methods I used in a previous urban futures workshop I ran back in 2015 (Peeking over the Horizon) – which aim to push people further in their thinking than just talking about whatever innovations which already exist are at the forefront of their minds. The workshop was titled, Beyond Engagement, to address a signature problem in fields such as planning and urban design – namely that citizens are often subject to engagement and consultation processes and exercises which rarely report back to them or offer any real agency in the process. So many consultations and engagements are simply hollow, ‘box-ticking’ attempts to provide a veneer of transparency and democratic involvement, often to mask decisions already taken. This workshop aimed both to build upon the themes and talks from the earlier panels and to inspire the participants to think beyond just engaging or consulting citizens, and to try to anticipate the impacts and outcomes of innovative practices in their fields, and their intersectional effects on society more widely. Thinking about the future not just to describe trends on the horizon, but to anticipate what ‘next practices’ and effects might be.

The workshop had two exercises – “Vectoring the Future” and a StoryCubes experiment to finish. “Vectoring the Future” uses large worksheets with 6 ‘vectors’. Participants chose which vectors they wanted to think about (themes such as, Public Benefit, Private Profit, Infrastructure, Health & Wellbeing, Work & Leisure, Housing, Equality, Inclusivity, Privatisation Public Realm, Private Space, Sustainability, Resilience, Planning, Regulation, innovation, Enterprise) and worked from the outside of the sheet inwards. The outer section providing a space for describing the state of the art or cutting edge innovations in each vector. The next section providing space to reflect on what potential impact or consequences they might have, with the next section for imagining what the next directions such effects would suggest. In the centre is a space for anticipating the ’emergent’ qualities and effects that might arise from the intersection of innovations, effects and next directions across the various vectors chosen by the participants.

At the event, we had 6 tables, each with 5 or 6 participants who each completed one of the worksheets. Once each group had completed the process, they reported back, giving a summary of what vectors they had chosen and how the conversation had flowed towards the space of emergence. Interestingly, each group found a unique perspective even when they shared similar initial vectors and the quality and range of the discussion across topics of technology and innovation in particular was significant.

After a short break, we returned for the final StoryCubes exercise – a simple and fun way to bring things together and open up the discussion even further. Each participant was given a StoryCube and asked to write 6 things on it that they thought were most interesting or important to them from the whole day. Then I asked a first participant to put their cube on a table in the middle and describe one or two things they had written down. From there, then next person came up, placed their cube next or on top of another and linked it to one of the themes on someone else’s cube. Eventually building up a structure of connections between issues and ideas people felt had inspired or motivated them, as well as revealing gaps and other issues that were still to be explored.

I was really impressed  by the energy and focus of the event and its participants, as much as by the ambition of the organisers : a brilliant initiative by students from different universities to come together to learn from each other and value their different disciplinary perspectives on shared problems and issues.

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Civic Thinking for Civic Dialogue

Over the past six months or so I have been focused on my work for the UnBias project which is looking at the issues of algorithmic bias, online fairness and trust to provide policy recommendations, ethical guidelines and a ‘fairness toolkit’ co-produced with young people and other stakeholders. My role has been to lead the participatory design process on the Fairness Toolkit, which has involved devising and facilitating a series of workshops with young people in schools and a community group, as well as with stakeholders in the ICT industry, policy, civil society and research fields. My colleagues in the Human Centred Computing group at the University of Oxford and the Horizon Digital Economy Institute at the University of Nottingham, as well as Informatics at the University of Edinburgh, have been wonderful collaborators – providing a rich intellectual and pragmatic context for developing the tools.

The co-design workshops with two schools (in Harpenden and in Islington) and with a young women’s group in Oxfordshire explored what their levels of awareness of the issues were, how relevant to their own lives they perceived them to be, and what they thought should be done. In each workshop, and with each group, we consistently encountered quite different perceptions and experiences – often unexpected and surprising – whilst also observing certain commonalities, which were echoed in the findings of the Youth Juries which our colleagues at Nottingham have been running for UnBias since late 2016. Many of the young people expressed a certain fatalism and lack of agency regarding how they use technology which seems to foster a sense of isolation and inability to effect change. This was coupled with a very limited sense of their rights and how the law protects them in their interactions with service providers, institutions and big companies. Unsurprisingly, they often feel that their voice is not listened to, even when they are the targets of some of the most aggressive marketing techniques.

The tools have thus been informed and shaped by young people’s perceptions and their burgeoning understanding of the scale and depth of algorithmic processes affecting modern everyday life. The tools have also been designed to address the atomising effect that personalised technologies are increasingly understood to have – whereby the increasing personalisation of platforms and services isolates our experiences of media and the mediated world from each other. Where broadcast technologies used to be understood to have a homogenising effect on societies, networked technologies, and the highly personalised software services running on them, are creating a sense of isolation from other people’s cultural and social experiences as they serve each of us something more bespoke to our own tastes and preferences. Recent controversies over the use of targeted advertising in US and UK elections has exposed the iniquitous consequences of such hyper-specific campaigning, and offered a new set of insights into the wider, and deeper social and cultural impacts happening around us.

I have tried to design a toolkit that could build awareness of these issues, offer a means to articulate how we feel about them, and provide a mechanism for ‘stakeholders’ (in the ICT industry, policymakers, regulators, public sector and civil society) to respond to them. What has emerged is something I call a ‘civic thinking tool‘ for people to participate in a public civic dialogue. By this I mean a mode of critical engagement with the issues that goes beyond just a  personal dimension (“how does this affect me?”) and embraces a civic one (“how does this affect me in relation to everyone else?”). And then, when we participate in a public dialogue about these issues, it is not simply conducted in public, but it embraces the co-construction of our society and acknowledges everyone as having a stake and a voice within it. It is about trying to find co-constructive and non-confrontational means to engage people in critical reflection about what kind of world we want to have (and the roles algorithmic systems in particular should play in it).

On Monday we held a workshop to preview the first draft of the toolkit and seek feedback from a variety of stakeholders. Take a look at the presentation below to find out more:

The response has been very encouraging – highlighting the strengths and revealing weaknesses and areas that need additional development. The next stage is to start a testing phase with young people and with stakeholders to refine and polish the toolkit.

We are also developing relationships with “trusted intermediaries” – organisations and individuals who are wiling to adopt and use the toolkit with their own communities. As the UnBias project concludes in August, our aim is to have the toolkit ready for deployment by whoever wants to use it this Autumn.

Exploring Risk

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Over the past 6 weeks I’ve been working with Professor Lizzie Coles-Kemp and her team in the Information Security Group at Royal Holloway University of London to produce a publication as a deliverable for their part of the TREsPASS project.

TREsPASS : Technology-supported Risk Estimation by Predictive Assessment of Socio-technical Security was a 4 year European Commission funded project spanning many countries and partners. Lizzie’s team were engaged in developing a “creative security engagement” process, using paper prototyping and tools such as Lego to articulate a user-centred approach to understanding risk scenarios from multiple perspectives. The three books and the poster which comprise TREsPASS: Exploring Risk, describe this process in context with the visualisation techniques developed by other partners, as well as a visual record of the presentations given by colleagues and partners at a Summer School held at Royal Holloway during summer 2016.

The publication has been produced in an edition of 400, but all 3 books included in the package are also available to read online via bookleteer, or to download, print out and hand-make:

We are now starting a follow on project to develop a creative security engagement toolkit – with case studies, practical activities and templates – which will be released in early 2017.

Fairness and Bias in an Algorithmic Age

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Last month a new research project of which I am part got underway – UnBias: Emancipating Users Against Algorithmic Biases for a Trusted Digital Economy. Its a collaboration between the Universities of Nottingham (Horizon Digital Economy Institute), Edinburgh (Informatics) and Oxford (Human Centred Computing) funded by the EPSRC through its Trust, Identity, Privacy and Security in the Digital Economy strand. Over the next two years it will look at the complex relationships between people and systems increasingly driven by personalisation algorithms and explore whether, and to what degree, citizens can judge their trustworthiness.

My role will be to lead a co-design process that will create a ‘fairness toolkit’ : raising awareness about the impact of algorithms on everyday behaviours; devising pragmatic strategies to adapt around them; and engaging policymakers and online providers. We will be working with schools and young people to co-develop the toolkit – following in the wake of previous projects exploring young people and social media, such as Digital Wildfire.

For me this project cuts to the quick of concerns at the heart of today’s society: empathy, agency, transparency and control. I will be bringing ideas and practices to the project I have been exploring from a number of different trajectories over the past few years, from my work on the Pallion project to data manifestation and reciprocal entanglements. I am particularly excited as this marks my first formal collaboration with Oxford’s Human Centred Computing research group with whom I’ve been in dialogue for a couple of years.

Mapping Rehab Journeys

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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.

Data Manifestation Talk at ODI

Video of my talk at the Open Data Institute on Friday 17th June 2016:

For further details, read my post, How Do We Know?

Reciprocally Entangled

This statement of my current thinking on the topics of agency, data and quantum computing was originally presented to the Human Centred Computing research group at the University of Oxford on October 1st 2015. The group, with whom I have been developing a dialogue since Spring 2014, is led by Professor Marina Jirotka and has a particular focus on Responsible Research and Innovation. They are involved in embedding RRI into NQIT – the Networked Quantum Information Technologies Hub based at Oxford. I have made a few changes to the original text inspired by the group’s extremely thoughtful comments and discussion.

Introduction
At the core of all my work and projects over the past 20 years is the theme of agency. By that I mean our ability as humans to act on our own initiative, to make informed decisions and choices. To be willing actors rather than directed subjects in all areas of life. In my experience open and transparent communications are fundamental to such an aspiration, and many of my projects explore ways and means of enabling people to communicate and interact with other people and systems to achieve this.

Looking back, there is a clear trajectory in my work which emphasises that systems should engage people and empower them, not seek to condition their experiences or shape their lives. From my work on the convergence of mobile phones with wireless internet and GIS mapping technologies in the early 2000s which has been described as a kind of proto-social media (Urban Tapestries), to experiments with sensors and platforms for citizen science style pollution mapping (Feral Robots & Snout), as well as experiments in data manifestation as a critique of the quantified self meme (Lifestreams). In my opinion, too often the technologies that are deployed across society are not intended to benefit all, but are contingent on bringing benefit to a privileged few – those who build them and those who commission and own the systems being built.

I believe that human individualities and different people’s idiosyncracies of learning and understanding are crucial social assets that enrich our collective experiences of life. I want to explore how we can design systems that adapt to these values and incorporate their dynamic into their very fabric. I want to find alternatives to the expanding deployment of systems and technologies that shape and manage behaviour by imposing rigid and inflexible decisions or choices. I believe that we need to question and challenge the mindset that sees the efficiency of algorithms and data-driven inference as the pinnacle of how human societies should be run.

One of the ways I think we can begin to revolutionise our relationship to data is by bridging the biological and digital. If we can design ways to utilise the whole human sensorium (not just vision and hearing) for sense-making and interpretation, then I believe that we can make complex information tangible and appreciable in richer and more nuanced ways. This means departing fundamentally from normative data representations on computer screens. It means embodying them in reciprocally interactive engagements that afford us greater use of our highly developed senses – what I have been calling “data manifestation”. This could allow us to experience data in ways that reveal things we have hitherto not considered possible. It may also reveal contingencies and limitations in what kinds of data are being collected – and may lead us to collect different kinds of data that have perhaps been overlooked.

How might we enliven relations between humans and machines so that they can be mutually influential rather than unbalanced in favour of one side or the other? I suspect that the promise of quantum computing, with its multiple states, may offer something along these lines, but only if we, as researchers and designers, have the courage of our imagination to make such a future possible.

Entangled Engagement & Quantum Computing
I have been thinking recently about the nature of entanglement – as far as I can understand it as a lay person not a scientist – and how the highly metaphoric language itself suggests an unintentional or, at least, ambiguous state. If we think about how we use the word ‘entangled’ in everyday situations it is to describe something, or some things, that have become entangled accidentally – without the deliberate decision to do so.

I have titled this statement “reciprocally entangled” because I think that the promise of quantum computing is one we must have agency with and choose to engage with, rather than unwittingly becoming caught within. That we might deliberately choose to enmesh ourselves with a system that, like humans, can be more than a cascade of rules and simple on/off decisions, would be a significant revolution in how we decide to run our societies.

I think that this idea of ‘unwitting entanglement’ characterises many of the fundamental problems we are experiencing with the so-called Big Data revolution, where we have suddenly begun to find ourselves subject to systems that are ruled by inference and not by balanced judgement. My proposition is that just as we might think that our society and civilisation has become enmeshed in a complex set of interlocking inference systems which define people’s lives in ever more intrusive ways, so might we begin to think of quantum computing – and being reciprocally entangled with such a system – as being closer to the kind of complex and consciousness-driven judgement that previously defined our choices and decisions (since, say, the Enlightenment).

More and more, the effects of decisions made by data-driven inference are coming to pervade aspects of our everyday lives. It is not always clear how such systemic decisions are arrived at, but it is undeniable that people are both shaping and having their choices shaped as an affect of the increasing reliance on so-called Big Data systems. A kind of blind self-governance that could so easily tip over into forms of self-censorship, self-privation and self-denial.

Such choices are most visible to us on an everyday level in the recommendations we see in internet shopping (“you’ve bought this and might like that”) and what social media systems select to populate our profile feeds (both adverts and posts by our connections). Their use in electronic financial services is widely known of, but little known about – obscured behind a veil of exclusivity, secrecy and the disparities of wealth and power. The role of such systems in health is also increasing, driven as much by attitudes towards risk and liability in the health insurance industry as by advances in medicine, wellbeing and disease prevention. These opaque applications remain worrying precisely because they flow against the transparencies of fairness and democracy that our society has been implementing over the past few centuries.

But what if we can rethink how we interact with systems as reciprocal engagements? And what if we were to see them as entangled relationships at the same time?

Perception is more than simply seeing
How humans perceive and create meaning is an associative process that is fundamentally different to inference from data. It is an expression of the difference between consciousness and a structured system; and, furthermore, it is more than what is offered by systems that mimic ‘neural nets’. Aesthetics and how we make meaning from artworks gives us a concrete example of how this operates in practice. Aesthetics cannot be taught, but flows from a dynamic interweaving or perhaps an entanglement of our memories and experiences with our physical senses. At each moment of experiencing something in an encounter with an artwork – writing, painting, sculpture, music or performance – we are existing in an entangled moment blending the now with the summation of our conscious sense of self. We are not inferring meaning (as a structured data-driven system might), but actually making meaning from the experience itself.

So-called neuro-aesthetics has sought to find a physical explanation of this process in the chemical reactions in the brain. But so far it has not been able to,

“ Objects are not triggers for internal events in the nervous system; they are opportunities or affordances for our continuing transactions with them. …
Art is experienced in the setting of argument, criticism, and persuasion. This is all compatible, Kant realized, with the fact that there is no way of adjudicating disputes in this area, that there are no decision procedures, no rules, no way of proving who’s right and wrong.”
Alva Noë, How Art Reveals the Limits of Neuroscience, The Chronicle Review

Beyond Visualisation : Embodied Entanglements
What if we can bridge the digital and biological by utilising the whole human sensorium for sense-making and interpretation – going beyond just vision and hearing? What if we could make complex data tangible and appreciable to a range of human senses? Embodied and felt instead of just seen and heard. In turn the experiences could be fed back in to data systems as a new set of parameters that could adjust the nature of systems that use the data. This was the theme of my Creativeworks residency with the Computer Science department at Birkbeck in Autumn 2014. The workshop I devised to help communicate the potential of multisensory expressions of data has been a crucial step in continuing to develop the ideas begun with the Lifestreams collaboration with Philips Research in 2012.

What I hope to do next is to embark on a journey of collaboration and discovery to demonstrate the potential for social change that could be unleashed by developing multisensory interactions with the digital data that is increasingly measuring, being analysed and governing our daily lives. Humans have extraordinary sensory capabilities which are not currently being used in how we encounter data – principally through screens (sight), occasionally sound and, rarely, through haptics (touch). I believe that this leaves us impoverished. By expressing digital data in new forms we could unlock entirely new modalities for recording, sharing and understanding how we live our lives : from experiences of illness and rehabilitation via biosensors to how we make sense of the Big Data that now shape and govern our society.

I hope to explore this theme along a series of trajectories and to demonstrate – to scientists, technologists, designers and policymakers and to the wider public beyond – how we could create transformational ways for people to engage with and make sense of data. I aim to work collaboratively (with old and new partners) to develop projects and experiments that express digital data in different ways that engage human biological senses other than just sight and hearing – such as touch, smell, taste, balance, temperature, proprioception and time etc. I am particularly keen to engage with researchers in the biological and life sciences (and hybrid fields such as computational biology) to create a bridge between how people interact with and make sense of the biological world around us, and with digital systems.

Documenting Traditional Knowledge in Papua New Guinea
Alongside these concerns I am working with Professor James Leach and a community of indigenous people (from Reite village) living a traditional way of life in the jungle in Madang Province, Papua New Guinea. There we are co-developing a simple hybrid digital/physical toolkit for people to self-document local traditional knowledge of plants, customs, design and productions techniques (TK Reite Notebooks). The tools and techniques we are co-designing there are based on my pioneering work since the late 1990s in hybrid digital/physical publishing. It uses the Diffusion eBook format, a unique paper folding method invented in 1999-2000, as well as the bookleteer.com self-publishing platform which was created and launched in 2009. This is another form of what I have called “public authoring” – making it possible for people to communicate things of value in open and shareable ways.

What is clear is that Reite people’s culture doesn’t consider knowledge as a series of static objects – in the Cartesian tradition of Western Knowledge – but as relational. Knowledge is constructed and exists in the relations between humans that hold it, share it and pass it on to future generations. It is always contextual and situational. To me, this establishes a conceptual link with what I have been exploring in my data manifestation work – that how we develop understandings of information and the ways it can be encoded in forms or media is located in the experience of the encounter, and our conscious ability to reweave our experiences in the present with those in our memories of the past.

One of the most striking things about this project is the difference between traditional anthropological ethnography and self-documentation that emerges from its results. What people choose to value and document may not necessarily be intelligible to outsiders, or of any interest. This flows against the mainstream of anthropology and ethnography which seeks to observe, understand and explain a culture to others. I feel that my conception of public authoring is akin to the aims of the originators of Mass Observation, who proposed an “anthropology of ourselves” back in the late 1930s. They thought that it was important for ordinary people to document ordinary life, and developed a framework that encouraged people from all walks of life to record and submit reports on things, customs, events and behaviours which they observed. Mass Observation and public authoring are both creative activities that seek an audience beyond their immediate community, yet at the same time they are the outputs of people attempting to record their own world and values for themselves.

In a similar way, the lifecharms, or data shells, which we created in the Lifestreams project were expressions of data manifested into material form. As such the data itself ceased to be directly readable (as it might be in a graph or chart), but was embodied in the actual form and shape of each shell. No longer intelligible to anyone but the person whose data had been the source of the shell’s growth pattern, the lifecharms signify something without revealing exactly what. As a type of self-documentation this translation of digital data collected from biosensors and life-tracking devices begins to mirror the output of our public authoring notebooks of Reite village : fascinating to outsiders, yet unintelligible if not directly explained by someone within the community that generated them. Open to interpretation, inspirational and allusive, but never didactic. Where knowledge and communication are reciprocally entangled, not inferred.

The trajectory I sketched at the beginning of this statement – linking human agency as the core of many projects I’ve led – now connects all these thoughts on the nature of what kind of future we want to build. Is it to be one where we devise systems to manage our societies that are responsive and dynamically adapt to our interactions with them, or a future where our decisions and choices are increasing defined and shaped by algorithms designed by and for the benefit of an ever more remote elite?

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.