Summary: A systematic review of patient-reported outcome measures for AAC

Questionnaire
PROM: user-survey

Patient-reported outcome measures (PROMs) may be better understood as ‘user surveys’. They are usually a set of questions that healthcare professionals ask patients in order to understand their needs and experiences of health services. Each survey contains a range of concepts that are relevant to a particular type of service.

sysRV
Systematic review

I recently completed a systematic review of the literature related to user surveys for augmentative and alternative communication (AAC). A systematic review is a type of literature review that uses consistent methods to collect, sort through and summarise all the research papers relevant to a specific question.

quality.jpeg
Quality

During this process the reviewer assesses the pedigree of the research paper by checking the detail with which it was written. This allows the researcher to judge the quality of the report.

themes
Identifying themes

My review identified 15 different surveys that have been used with AAC users. None of the surveys had been specifically developed for AAC users. None had been adapted or made accessible for people who have physical difficulties that may affect their ability to complete the survey. Not all of the reports described the concepts in the surveys. I collected the concepts as they were described in 12 of the surveys (62 concepts in total) and gathered them together into similar clusters or themes.

9_themes
Themes generated

I developed 9 themes that described the concepts in the surveys: communication, thinking, independence, health, quality of life, physical, social, spiritual, AAC equipment. No one single survey covered all of these themes.

quality_2
Quality: Limited

The detail reported within the research papers was often limited, which makes it difficult to assess the authenticity of the research. It is a bit like trying to bake a cake without a clear list of ingredients and set of instructions: the quality of the cake is likely to depend on the clarity of the recipe. The quality of the research papers in this review was not very good so the strength of the review findings is also limited.

Slide1
Asking the experts

I asked the group of experts who are advising me on my project what they thought about the themes that I developed from this review and they felt they were all important topics to ask about when evaluating AAC.

sysRV_2
Second review

So, what next? I have carried out a second literature review exploring people’s experiences of using communication aids. I will use the results from this review, along with feedback from the expert group, to develop a set of questions. I will then carry out a number of interviews with people who use AAC and ask them these questions.

preference
Aim: to develop a PROM

Combining all this information together will give me a really good understanding of what is important to people who use AAC about their equipment and the support that they receive. This will help me develop a user needs and experience survey specifically for AAC users. This can be used by AAC services to help involve service users more in choosing a device and tailoring support.

This summary was co-developed with the expert group for the Unspoken Voices Project

You can watch a version of this blog on YouTube: https://youtu.be/YvBBFO6lfqI

A full academic report for this systematic review can be found here:  https://rdcu.be/bHgbW

All images in this blog were produced by www.sarahsmizz.com 

 

 

 

Advertisements

Negotiated Project: New perspectives

Sheffield_Institute_of_Arts_1378261982
Sheffield Institute of Arts

In previous posts I have written about how I integrated design methods into organising my project advisory group. I was initially inspired to do so following the Design4Health conference in Sept 2016. I sought out meetings and collaborations with designers at Sheffield Hallam University and was invited to set a ‘Negotiated project’ for the Design Masters students in the Sheffield Institute of Arts.

The student’s brief was to design a speculative communication aid device, giving careful consideration to the tension between form (the material product) and function (the purpose served by the product), through working collaboratively across design disciplines during the 12-week project period. I gave an initial presentation where I set out the challenges of communicating using an external device as well as the limitations of current systems. A member of my project public and patient involvement (PPI) group, Jamie, visited the students three weeks into the project to provide lived experience, inspire their design process and to answer any questions they had regarding communication aids. We visited again at the midway point and were invited back at the end of the project-period to view the student’s final presentations.

At the midway presentations we learned about how the students had approached the brief. It was interesting to discover that the products proposed at this stage were not dissimilar to devices already available to the AAC market. Nonetheless, it was a delight to observe how the students had explored the challenge and iteratively developed their ideas and responses using a variety of approaches and a range of information sources.

IMG_1217
Jamie and Emma at the final presentations

Jamie, Emma and I returned to Sheffield in May 2019 to see the student’s final presentations. The students had all moved on from the solutions they had presented at the midway meeting. Group one observed that the society-wide increase in mobile technology use, through smartphones and tablets, has resulted in everyone relying on communication aids: “We are all AAC users now”. They developed a simple communication interface that used 2 screens. The group speculated that a communication partner, in a shop or café, could use a screen facing them to select an appropriate vocabulary-set for their context e.g. a coffee menu in a café. The person with communication difficulties would then be able to choose, from a screen facing them and consisting of pre-set vocabulary suitable for the context, what they would like to order/communicate. The group had considered how communication aids often exposed the people who use them by displaying whole screens and sharing the message as it is being generated, rather than just the final message created as most of us do when talking. Their device was situation specific and spared the communication aid-user the need to over-share their thought-processes or have people look at their screens rather than their faces.

IMG_1187
OMNI – a 2-screen communication aid

Group two wanted to improve the speed of access and the user experience with communication aids. They had combined their design disciplines – illustration, interface and product design – to develop both switches to access communication aids and an interface and scanning method to speed-up message generation. The final designs were then illustrated through pictures and animation. Jamie observed the attractive appearance of the designs and prototypes. The appearance of communication aids is often overlooked in the quest for performance. As with many medical devices, solutions are engineered for purpose rather than appearance. Jamie commented that his communication device is an extension of himself and he considers how it looks on a par with the clothes that he wears. This comment reinforced one of the key features of group two’s solution – design matters.

The third group focused on developing something to improve engagement in speech and language therapy. Motivated by emotional design and led by the jewellery designer in their team, group 3 produced a picture constructed from glass tubes, with different coloured bungs, that were added to a sequence of holes in a frame. People attending speech therapy would gain a tube to reward successful interactions. They would be able to keep a physical memento of that success, such as a ticket stub of a successfully navigated bus journey, inside the tube. As they continue to achieve communication successes tubes are added to the frame until ultimately a composite picture emerges from the multi-coloured end-bungs. Jamie, Emma and I could all think of several alternative ways that such an item could be used in therapy and beyond. Emma also commented on how satisfying the prototype tubes were to hold. Group three had taken us on a completely unexpected design journey from communication aid to therapy aid, and we all enjoyed it very much.

IMG_1212
Composite picture made of glass tubes with multi-coloured bungs

The final group chose to target their design on communicating in one specific situation: eating out in a restaurant. They developed a fictional case study, a child between the ages of 4 and 9 with an unspecified communication difficulty, on which to focus their design. The jewellery and metal work student in the team looked to novelty restaurants such as Yo Sushi! for design inspiration. With input from an interaction design student the group developed a physical game, with wheels and tokens, and a complimentary app accessed via a personal tablet using QR code on the restaurant menu, to support choice-making. The final designs were attractive, fun and accessible in terms of their availability to restaurant guests. The group had focused on the idea of creating a communication support that was inclusive and promoted independence and decision-making with children. We were able to generate several environments where such gamification of choice-making with children could be valuable with all children regardless of their abilities.

Working with the design students was an enlightening experience. I found it fascinating to observe how they approached the brief using empathy, solution-focus, or emotional responses to inspire the design process. I was interested, if a little surprised, at the midway meeting to see that they had developed responses so similar to existing communication aid products. It was an absolute joy to then discover how they had developed these ideas into such a variety of products by the end of the 12-week project period. I have learned so much about the design process through my involvement with this project and am heartened by the results the students produced. If only more communication aid design could look beyond the brief, focus as much on form as on function, and develop solutions that enable the expansion of opportunities and horizons for people with communication difficulties.

 

 

 

 

Making research accessible

accessiblity

Image courtesy of Jil Wright, Flickr.com

I can’t quite believe how much time has flown by since my last blog post. I now have a backlog of blog posts that I want to share but I acknowledge that the winter months were barren, to say the least.

One of the issues that I have been grappling with recently is how to make research accessible. And I don’t mean just ‘easy-read’ accessible. How do we really get to the nitty-gritty of all our research-specific terminology and make it truly meaningful to people who don’t do research but might be interested in it. I had great fun with my PPI group last month unpicking some of jargon that I’ve been inflicting on them… but more of that soon. One of the other things that I promised my PPI group in return for their invaluable advice and insight on my project, is access to current research and innovation. I identified a paper concerning new and emerging AAC technology and summarised it for my PPI group. I also made a rough and ready video that they could watch as some of the group have limited literacy (https://youtu.be/sngSV5TZJpc). They were happy with my attempt so I thought I’d share it here so others might be able to access it too. Please get in  touch if you do share it, or get any feedback on it, or if you have any feedback on it. I’m also interested to find out how others have made research accessible to a non-specialist audience.

New and emerging access technologies for adults with complex communication needs and severe motor impairments: state of the science. Susan Koch Fager; Melanie Fried-Oken; Tom Jakobs and David Beukelman. Journal of Augmentative and Alternative Communication (2019). Published online.

The aim of this research paper is to describe some of the patient-centred research which is supporting the development of new technologies to help people who have communication difficulties.

 Patient-centred design, in this research paper, is described in terms of 4 stages:

  • early involvement of the AAC user in designing a new product
  • the development of prototypes (models of the new product)
  • Ongoing development and improvement of the product design
  • Evaluating the final product with reference to the person using it

The design of each of the new technology products was inspired by an individual, described in a case study. ‘Case study’ is a term used in research to describe an individual and their circumstances.

Movement sensing technology picks up the movements and activity of individuals wearing a device. For example, wearable fitness monitors can track the number of steps that people take each day and the types of activity that they carry out i.e. running, cycling, walking, swimming. Invotek Inc (https://www.invotek.org/) is a company which is using a similar type of technology to develop a switch to help people to access augmentative and alternative communication (AAC). Some people cannot control all of their movements. The technology described in this research paper aims to use movement sensors, like those found in activity watches, to tell the difference between controlled and uncontrolled movements. Only the controlled movements are detected and used to activate a switch.

movementsensor

Image of the movement sensing switch

Brain-computer interface (BCI), as described in this paper, is a type of switch that detects electronic brain activity (brain waves) to activate switches. This technology may be of value to people who have limited or no control of body movements but who have good thinking and spelling abilities. BCI is currently used to help people spell out words. The person using a BCI would need to wear electrodes on their skull which detect brain activity. Letters may flash up on a screen in front of the individual using a BCI. When the target letter appears, it can be selected by thinking about selecting the target. The electrodes detect the brain activity and activate a switch to select the letter. BCI technology is not currently widely used outside of research studies. Research about BCI is exciting and promising but is unlikely to be usable by large numbers of people until it has been further developed.

BCI

Image of a person wearing the BCI electrodes cap

Multi-input strategies in this paper is, more specifically, using an eye-tracker alongside a switch to increase the speed of target selection. Some people can find using an eye-tracker difficult especially when trying to select small targets. Lighting, the position of the user and the condition of their eyes can all affect people’s ability to use an eye-tracker alone. A prototype (model) has been developed that allows people to access their AAC using more than one switch. The person described in this research paper used eye gaze to select the area of the screen that the target letter appeared in and then a switch to choose the letter.

eyegaze                               switches        

Images of an eye gaze system and a range of switches                                            

Supplemented speech recognition (SSR) is a computer software that can support unclear speech by suggesting words when someone with a communication difficulty cannot be understood. The person with the communication difficulty has to train the software so that it can learn to link their speech patterns to words. When a listener cannot understand what is being said, the speaker can speak into the software, type the initial letter of the word they are trying to say, and the software will predict what the target word could be. The speaker can then select the word they are trying to say from a list of options available on the software.

SSRunit

Image of the SSR unit

Supplementing access with partner input is done by using an app that both the AAC user and their conversation partner have access to. The SmartPredict app allows the conversation partner to make suggestions to the AAC user about what they might be trying to say. The AAC user will see these suggestions in their predictions list and be able to select or ignore them as they wish.

RERC

Image courtesy of RECR on AAC, Pennsylvania State University

“The goal of these new and emerging technologies is to increase the ability to access technology, reduce fatigue, and improve satisfaction with communication[…] Although the technologies described in this paper are promising, there is more work to do.” Page 9, paragraph 6

Four of the five case studies described in the paper are people who have acquired communication difficulties as adults.

 

 

 

 

 

 

 

 

The Stars of the Show

Slide1
Image produced by Smizz: smizz.com

What happened to October? This post was intended for October but I seemed to have lost that month and found myself at the end of November, staring down the barrel of December without having written anything. October was AAC Awareness Month, a celebration of all things ‘alternative and augmentative communication’ – and therefore a perfect opportunity for me to champion the main players in my research project. I also held my fourth expert advisory group meeting in October (see also Asking the expertsEngaging the experts and Expert collaboration). If ever a reminder of the importance of this project or the complexity of the population who use AAC was needed, the group provided it. I have also started a second literature review, focusing on uncovering the ‘missing perspective’; discovering what the research already tells us about what is important to people who use communication aids. So in this post (albeit a month out), I wanted to revisit the challenges, intrigue and satisfaction of working in AAC.

If I learnt one thing during AAC awareness month, it is that there is a plethora of resources, charities, organisations and individuals supporting AAC (e.g. Ace Centre, Communication Matters and Call Scotland to name but a few in the UK). The over-riding message that I hear from people who rely on AAC however (from previous research, my expert group and clinical anecdote) is that they frequently feel under-supported and not well engaged in decision making. One of my Marvellous Experts puts this down to a disconnect between the perspectives of health care professionals and people who rely on AAC. He believes that health care professionals, specifically speech and language therapists, still predominantly practice guided by the ‘medical model’ i.e. identifying a deficit and fixing it. His preference is the ‘social model’ of disability which would promote enabling people to overcome barriers to inclusion by addressing the barriers themselves. He lives independently with support from a personal assistant (PA) and uses his AAC to enable him to manage his life, direct his PA as well as to communicate.

Cartoon_social_medical_model_RossAtkin
Image courtesy of Ross Atkin: rossatkin.com

Another of my Marvellous Experts only started using AAC a few years ago (well into adulthood) but is now a ‘super-user’ – able to programme his computer-based AAC independently as well as support other people using the same communication software. Despite being proficient in using his AAC, he still frequently relies on his partner to interpret his non-AAC communication (a combination of vocalisation and gestures). He describes his AAC as “what’s in my head” but sometimes struggles to get out what he wants to say in a timely manner, to keep conversation flowing, so finds it quicker to use his partner. Again, he is fiercely independent and uses is AAC when out and about to communicate with people who don’t know him. He reports that his AAC has been a lifeline to opportunities that he couldn’t have imagined before he started using it.  Despite his high level of skill he would still like more training to use his AAC and reports that he hasn’t ever been asked to evaluate his AAC or provide feedback to the services supporting him.

Both the experts featured above have had communication difficulties for as long as they can remember. I have two Marvellous Experts who acquired communication difficulties as adults, have had a different experience of AAC and therefore bring a very different perspective to the group. One described AAC as representing a ‘loss’; when the time comes that he is required to rely on AAC, it will be because he can no longer speak clearly enough to make himself understood. The other discussed the challenges of trying to interrupt conversations using AAC rather than the vocalisations that most of us use to interject. Rather than using AAC to increase their independence, broaden horizons or open up new opportunities, for these experts AAC is a rather slow and clunky alternative to speech which is adopted somewhat reluctantly.

I also have some younger experts in the group for whom AAC is inextricably linked to their sense of identity. One in particular is slightly resentful of his AAC as he feels that it draws attention to him when he’s out in public. He doesn’t like using it with people who don’t know him as he doesn’t want to have to explain to people why he relies on it. The sense of identity and AAC has also come up in relation to the voices on AAC devices. Many people, including Britain’s Got Talent winner Lost Voice Guy , bemoan the lack of regional accents on AAC.

lost voice guy
Lee Ridley AKA ‘Lost Voice Guy’. 2018 winner of Britain’s Got Talent

I am currently looking at the research literature, again, to find out what is already known about the experience’s of people who rely on AAC.   I have been surprised at the amount of qualitative research that I have uncovered. I am yet to sift through all the results and identify the reports of greatest relevance to this project, but a superficial screen would suggest that user-perspectives have been a feature of the available evidence base for almost as long as we have been investigating AAC. One of the challenges of qualitative research is that the results aren’t generalisable; studies are usually used to develop a greater understanding of the essence of experience. I have learnt from my group that their experiences are wide, varied and as individual as they are. I am looking for themes within the existing literature that capture people’s experience of and values in relation to AAC. I will share these themes with my experts and with participants in the project to learn whether or not they resonate with personal experience.

I have described a few individual examples of people who rely on AAC, but is by no means representative of the population in general. One of the discussions that we had during my last group meeting was the need to look for similarities between the priorities and experiences of people who rely on AAC, rather than try to group people in relation to the condition causing the communication difficulty. This is one of the intended outcomes from this research project: seeking areas of consensus. I hope that identifying such similarities may help clinicians and services evaluate the AAC they issue and the support they provide to people who rely on AAC. Whether or not we can find any harmony within such a diverse group of individuals remains to be seen however. And whether this information can be suitably translated into a tool that professionals will engage with or that people who rely on AAC can be made aware of will be one of the greatest challenges of the project. Luckily, I have a supportive, passionate and energetic expert group with a broad range of experience between them: the stars who will shine a light on whatever I uncover during our research journey.

 

Beyond boundaries

Autumn_1

The Autumn equinox has just passed and I am “laden” with thoughts and reflections to nourish the start of a new phase in my research project. I was certainly “worn of heart, and weak of hand” after a hot, sunny and active summer and appealing though “nought but rest” sounded,  September is conference season and I had work to do. Conferences provide opportunities to share, learn and reflect. Plenty of both occurred during my trips to Sheffield and Leeds at the start of the month. Disrupt is the word that “sets me free” as I draw on my learning from the past few weeks and set an agenda for the new season.

The Design4Health conference in Sheffield brought together international designers and healthcare professionals to share their experiences of trying to draw these two antithetical worlds together. Keynote speakers from backgrounds as diverse as design, public service, creative arts and extreme sport (see Dilys Price, the worlds oldest female skydiver!) framed a conference that was both inspiring and challenging in equal measure. A team of “Double Agents” offered conference delegates encounters that question the boundaries that exist between roles (as researchers, healthcare professionals, carers)  and between design and health. They encouraged participants to look beyond these imagined borders and to re-frame the role of arts in health. With this in mind, I have been re-exploring the role of method in my research project. I have always felt that traditional research methods (as with traditional PPI methods) do not suit people who rely on AAC. I have been reading “After Method: Mess in Social sciences” by John Law which questions traditional understanding of research method. It encourages researchers to consider more broadly what can be considered as data and to think beyond dialogue. A fellow conference delegate signposted me to Creative Research Methods by Helen Kara (a much easier read) which provides some practical ways to approach qualitative data gathering. Design4Health disrupted some of the ideas and frameworks that I had in terms of research processes and methods and allowed me to look beyond the boundaries that traditionally encapsulate professional roles.

At the Communication Matters conference in Leeds, I had the privilege of presenting the evolution of my project’s Patient and Public Involvement (PPI) group with two of my experts, Jamie and Patrick. One of the things I have always valued about the CM conference is that it is inclusive – with delegates from clinical, educational and academic backgrounds as well as representatives from companies who produce and people who use AAC being in attendance. Speaker sessions are still grouped into ‘research’, ‘professional practice’ and ‘personal experience’ however, encouraging delegates to select sessions based on their personal affinity. I felt very proud that our presentation intersected the boundaries between all three. We had a receptive audience and received some really positive feedback. I believe the strength of our message lay in our collective ability to speak across traditional divides. I enjoyed hearing about the experiences of people who rely on AAC but was horrified by some of the more brutal realities of living with complex disability. Even the most competent, well-supported individuals have found themselves in very vulnerable and dangerous situations as a result of poor care or a lack of understanding. This is something we all have a responsibility to counter and the unifying message of the conference was that of improving the self-actualisation of people with complex disabilities. This will involve disrupting some of stereotypes commonly associated with disability by expanding discourse, roles and opportunities. I hope my research project will be part of this movement.

Longer autumnal evenings have provided a good opportunity to explore the books that the long and busy days of summer didn’t accommodate so well. This season I have started reading Daniel Kahnemen’s influential “Thinking Fast and Slow”. This book has definitely pushed me beyond my traditional bedtime reading boundaries but is a very rewarding read and has provided a new lens through which to view my experience as a doctoral researcher. In essence, following years of psychological investigation, Kahneman presents an argument for 2 cognitive systems concerned with thinking: system 1 which deals with instinctive and emotional thought and system 2 which is more deliberate and considered. This resonates with my experience of research. Years of professional practice had resulted in much of what I was doing in clinic being reactive and intuitive: system 1 was at work more often than not. Becoming a clinical researcher provides a daily dose of newness requiring far more reasoned thought. I have activated the habitually lazy system 2 to learn new skills and to embed new thought patterns in order to develop new instincts. Disruption is at play again – pushing against the boundaries of what I thought I was, what I thought I would do and what I thought I was capable of doing.

And so with the passing of summer, conferences, and phase one of my research I approach autumn with a freshness of mind and a slowness of thought. The conferences have fuelled me with new ideas about the methods I can employ during the project. I understand that my thinking needs to change pace to reflect the need to engage system 2 and create a new heuristic, or framework, from which to make decisions and form judgements. The disruption resulting from this seasonal transition has liberated me from some of the conventions associated with specific roles and methods. I intend to embrace the freedom.

 

Spreading the Word

transformers_PNG81
Image from pngimg.com used with license from Creative Commons 4.0 BY-NC

Research active healthcare organisations get better outcomes for patients. This is one of the main reasons that the National Institute for Health Research (NIHR) are investing in academic training for NHS clinicians. The fellowship programme that is funding my research (the Integrated Clinical Academic Pathway, or ICAP) is one such training pathway. It has the particular aim of supporting NHS allied health professionals (AHPs), nurses and midwives to develop research skills that they can then embed in their organisation. The mechanism by which this happens is specific to the role of the clinician and/or the infrastructure of their employing NHS organisation. There has been plenty written both here and elsewhere about the lack of clear clinical-academic career pathways within healthcare organisations, so how can an aspiring clinician-researcher change culture and create opportunities within their organisation? I have been fortunate enough to meet or hear about some people who have had success in doing just that; so it feels appropriate to share their experience in the hope that ‘spreading the word’ will help to inspire others to act and transform their horizon.

My professional body, the Royal College of Speech and Language Therapists (RCSLT), has had an active Research Champions network for the past few years. The support of this group was instrumental in my successful fellowship application, so it was a pleasure to meet other research champions again in July at the annual networking event. The aim of the research champions is “…to ensure that speech and language therapy is an evidence-based, research-active profession, bringing together research and clinical practice by working in partnership with the RCSLT and wider research networks.” The event was an opportunity to learn from each other’s experiences and to consider how we can continue to foster research as a profession both locally and nationally. We heard an inspiring story from Dr Heidi Siddle, a podiatrist in Leeds, about how the Leeds Teaching Hospitals NHS Trust developed a strategy for non-medical research careers – one of the first of its kind. Dr Sally Archer, a speech and language therapist (SLT), shared her experience of developing a research culture within her department at Guys and St Thomas’ NHS Trust by encouraging enquiry, evaluation and providing therapists with the opportunity to share their findings at conferences. The Clinical Academic SLTs group had the opportunity to meet again (some of us for the first time face-to-face), and formulated a plan for starting a clinical excellence network to support aspiring researcher-SLTs. It was encouraging to be in a room of clinicians from across the country with the shared ambition of embarking on a clinical-research career. We left the event having learned from, and being able to share, the ideas and experiences of those who have been part of creating a change within their organisations.

My employer is a community NHS trust that currently has very little in terms of research infrastructure. We have designs to increase our research activity however and have made some significant headway with developing both capacity for and interest in research over the past 12 months. One of the great advantages of the ICAP fellowship is the exposure to other organisations and networks that it has provided. One of my fellowship colleagues works for Solent NHS Trust in Hampshire. She made me aware of their fabulous Research Academy and conference event, which I was then able to share with my own Trust’s Research and Innovation forum. A colleague and I travelled to Southampton to attend their annual conference and we were delighted to meet the clinicians, patients and leaders who have developed the Academy from minimal research activity in 2011 to topping the NIHR league tables within 4 years. Seeing the types of research and development activities that the Academy boasts, and learning about their journey helped us to realise how we can grow and nurture research within our own organisation. The Solent Research Academy started with just a couple of research active clinicians and a vision. My colleague and I left with the hope (and belief) that we can host a similar event in the coming years to celebrate our own Trust’s successes.

The idea of building research cultures from deploying change agents within services was taken on by the East Midlands Clinical Research Network. They implemented a project using Research Envoys across two NHS Trusts in Leicestershire to “spread the research message”. Eight Research Envoys were proved training, time and mentorship to undertake projects within their clinical areas. The results included a increased awareness of how evidence based practice influences patient care, an increase in the amount research activity within the Trusts and altered career aspirations for all eight of the Envoys involved in the pilot. This is a great example of how a individuals, when provided with the right opportunities and support, can be catalysts for developing research cultures within and across organisations.

Embedding research into practice is not a job for one person. An individual can inspire others and ignite ideas but change will only really happen if there are a critical mass of people behind the movement and the requisite support from leaders. Creating a research culture within a profession, a trust or a healthcare network requires a team – of envoys, champions or simply research active clinicians. It’s been inspiring to see the results of their endeavours. Go forth and spread the word – you might just be able to create a change too.

 

Expert collaboration

Smizz_long
Image of expert group minutes, illustrated by Smizz

During the past month I have had cause to reflect on my motivation for carrying out this project, and to explore my personal philosophy behind my role as a speech and language therapist. The value of listening to people who rely on Alternative and Augmentative Communication (AAC) share their experiences is a central tenet of the project, and developing a tool that supports user-involvement in decision making and evaluation of AAC is one of the key intended outcomes. As a clinician, I believe that my input has greater impact when it is aligned with the priorities of the person I am working with, as opposed to prescribing therapy exercises or advice in their best interests. My underlying motivation as a clinical researcher is therefore to make service provision more patient-centred by exploring the mechanisms by which this can happen (i.e. learning from lived experience, and using assessment and evaluation tools that support engagement). At the start of my fellowship, I became embroiled in the guidelines, agendas and processes associated with carrying out research. I lost sight of the creativity and open-mindedness that conceived this research project and tried to fit my project and its participants into existing frameworks that don’t really accommodate the needs of people who rely on AAC. A fortuitously timed meeting with designers (Conference season) and the discovery of ‘Participatory Design’ (PD) has put me back on track. This is a reflective post about my experience, both theoretical and practical, of PD and how it is enlightening my approach to research.

Participatory design was born out of the social and civil rights movements of the 1960s when people started to demand an increased say in decision making. Its original application was concerned with the workplace and creating more conducive technology-abled systems by engaging workers in the design process. More recently it has been applied across a range of design problems from environments to products, and in a variety of contexts including community projects and healthcare. The basic premise of PD is to address power imbalance by sharing responsibility in decision making. Its underlying principle is that involving end-users in the design process will improve outcomes (i.e. successful use of the solution). The methods employed in PD are concerned with mutual learning. Designers learn about the context and problem from the people having the experience (the end-user), who in turn learn about the process and technical possibilities from the designers. End-user learning is based on having the experience of enacting, seeing, using and collaborating on the design solution. The ethical motivation for PD should be to support and enhance how people engage in shaping their world over time.

Discovering PD was an epiphanic moment; the principles, methods and ethical motivation resonate strongly with my personal philosophy, which underpins the Unspoken Voices Project. I used PD principles to improve the participation of my experts in advisory group meetings for the project. I described some of the methods I trialled  in a previous blogpost (Engaging the experts). Although I improved the interactions during that group, the methods were not always suitable due to the physical and cognitive difficulties experienced by some members. More recently, I used visual aids to support an expert meeting by focusing discussion around concepts that were presented in pictures and by using an artist (@Smizz) to illustrate the meeting (see title image).

Slide1
Some of the images used to facilitate discussion during a recent expert group meeting

PD has helped shift my thinking from using a traditional meeting format, relying on text resources and verbal discussion, to considering a framework method aimed at fostering inclusion. This has involved plenty of pre-planning and preparation of bespoke resources to facilitate engagement, but has enabled group members to participate more and consequently has enhanced mutual learning. Using Smizz’ graphics I was able to produce an audio-video of the minutes to which one of my group responded: “the audio minutes are wonderful… I mean I can read but I find reading hard and I am slow. It is a pity that other organisations or projects can’t adopt the audio approach.”

I have observed a change in emphasis within the expert group over the past year, as documented by my reflective blogs. I have progress from Asking the experts‘, to ‘Engaging the experts‘ and reached ‘Expert collaboration‘. The group has been a useful test-bed for employing Participatory Design principles as a mechanism for giving voice to the experts and addressing the power imbalance between professional/researcher and AAC user. This mirrors the shift in the language used by other groups concerned with the democratisation of research. INVOLVE,  an organisation which advises how to engage the public in research, has evolved from a focus on ‘involvement’ to promoting ‘co-production’. I have also discovered other researchers working with people who have communication difficulties are employing PD. There is a workshop focusing on this occurring at a Participatory Design conference this summer from which a methods guide will be produced detailing best practice for engaging people with communication difficulties in design.

Participatory Design offers an approach to engagement which correlates with the undying principles and philosophy that inform this project. Using PD principles to change the interaction dynamic within the expert group has significantly improved the ability of group members to participate. Through this foundation of mutual learning, I have learnt from expert feedback and been able to develop the process for engaging people who use AAC both within the group and in development materials for participant recruitment to the study. Group members report gaining a better understanding about the project and its potential value to people who use AAC. Many of the tools and mechanisms for employing PD are challenging for people who rely on AAC however as physical, cognitive and communication skills are inherent to enacting, using and collaborating during the design process. Further joint working with designers, artists and creative thinkers will help to overcome some of these methodological challenges and I look forward to reporting on these initiatives in future. Participatory design has also helped me to view other elements of my research project through a different lens. Whatever tool I ultimately develop to support decision making and evaluation in AAC will need to be dynamic, accessible, flexible and, most importantly, co-designed.

The section on participatory design (paragraph 2) was largely informed by the following text book: Routledge International Handbook of Participatory Design. (2013) Ed. Jesper Simonsen and Toni Robertson. Routledge: Oxon