Co-production: participant and stakeholder involvement in research

Wednesday 28 June 2023 10:00-11:00 BST

This was part of the series of regular free webinars from the UK Research Integrity Office on research integrity and related issues.

Participatory research ‘encompasses research designs, methods, and frameworks that use systematic inquiry in direct collaboration with those affected by an issue being studied for the purpose of action or change’.* In this webinar, expert speakers explored the benefits and challenges of this approach to research including the ethical issues it raises. Speaker biographies, links to the slides and recorded videos, and a transcript edited for clarity are below.

*Participatory Research Methods – Choice Points in the Research Process | Published in Journal of Participatory Research Methods (scholasticahq.com)

SPEAKERS

The ethical challenges of co-production 

Professor Kate Pahl, Professor of Arts and Literacy, Faculty of Health and Education, Manchester Metropolitan University. Kate’s slides can be found here and the video is here.

Why practice research matters in the arts: valuing the benefits of co-production between researchers, artists and audiences. 

Professor Sarah Whatley, Coventry University – Centre for Dance Research. Sarah’s slides can be found here and the video is here.

SPEAKER BIOGRAPHIES

Professor Kate Pahl, Professor of Arts and Literacy, Faculty of Health and Education, Manchester Metropolitan University

I have a background in co-production and working with communities. I am currently the PI of the NERC funded ‘Voices of the Future’ project which explores, collaboratively, the relationship between children and young people and trees. My publications have been concerned with co-production, and artistic methodologies. I am experienced at leading multi-disciplinary teams. In the ESRC funded large grant ‘Imagine’ I took over as PI, leading a £2.2 million project over five years (2014-2017) exploring the cultural context of civic engagement. I am the joint author of Collaborative Research in Theory and Practice The Poetics of Letting Go. Bristol University Press, ‘Living Literacies: Literacy for Social Change’ (2020) MIT press, and ‘Re-Imagining contested Communities: Connecting Rotherham Through Research’ (2018) Policy Press. My interests lie in recognising tacit knowledges within communities, together with a focus on young people’s voices and an interest and understanding of artistic methodologies. I am also experienced in thinking about literacy and language intergenerational practices in communities, and have worked in family literacy. I have worked with poets and artists, and young people in communities to support their voices to be heard.

Professor Sarah Whatley, Coventry University – Centre for Dance Research

Sarah Whatley is Director of the Centre for Dance Research (C-DaRE) at Coventry University, UK. Her research interests extend to dance and new technologies, intangible cultural heritage, somatic dance practice and pedagogy, dance documentation, and inclusive dance practice; she has published widely on these themes. Whilst her expertise is primarily in dance, her research is often interdisciplinary and highly collaborative, working with artists, designers and researchers from other disciplines including law, anthropology, medicine, psychology, digital media and computing science. Funded by the Arts and Humanities Research Council, the European Commission, Leverhulme Trust, and Wellcome Trust, her projects focus on the creative reuse of digital cultural content, smart learning environments for dancers, reimagining dance archives and dance documentation, dance and disability, and creativity in dance. Her current projects explore ‘what it means to perform’ and the interface between dance, disability, prosthetics and robotics. She has served on REF panels (UoA D33) in 2014 and 2021, is a member of the AHRC peer review college and Chairs the AHRC-sponsored ‘Dance Research Matters’ campaign. She was founding Editor of the Journal of Dance and Somatic Practices and sits on the Editorial Boards of several other journals.

WEBINAR TRANSCRIPT

James Parry

Co-production, participant, and stakeholder involvement in research is a fascinating topic and one that UKRIO has seen a lot of interest in lately. Participatory research encompasses research designs, methods, and frameworks that use systematic inquiry in direct collaboration with those affected by the issue or topics being studied for research. It’s an interesting way of doing research and we’ll be exploring the benefits and challenges of this method of research, including the ethical issues that it raises.

We’ll begin with Kate Pahl, Professor of arts and literacy at the Faculty of Health and Education at Manchester Metropolitan University and after a Q&A session we’ll then hear from Professor Sarah Whatley from Coventry University at the Centre for Dance Research.

Kate Pahl

I’m exploring the ethical challenges of co-production and I’m going to be explaining the methodologies I use to co-produce with community partners. I’m going to describe some of the ethical challenges I faced in my projects and provide some suggestions for good practice.

My work is fundamentally interdisciplinary. It attempts to listen to the voices of children and young people. I’m going to give you three case studies from my practice, one of which hasn’t been disseminated before, to explain my ideas. I’m going to describe three projects:

• The first was funded by the ESRC. It’s called “Imagine”; it was focusing on the cultural context of civic engagement and the example describes the process of producing a book with community partners in Rotherham.
• The second project is HRC-funded, called “Odd: feeling different in the world of education”. I was a co-investigator on the project, looking at children’s feelings of feeling ‘odd’ in school and this project was about co-produced filmmaking.
• The final project is new, hot off the press. No one’s heard about this project in the sense of this is the first time it’s gone to 380 people! It’s called ‘Voices of the future’, funded by NERC. It’s a three-year, large project with nine universities, 23 people, looking at children’s and pupils’ engagement, the ‘Treescape’. It’s profoundly cross-disciplinary.

One of the things I feel very lucky about is that I was able to learn about co-production through a program called ‘Connected communities’, which was led by the HRC. It started in 2010. It was about researching community with, by, and for communities. The fundamental thing that changed my practice was that it asked everyone to write the grants with communities. It wasn’t just an add-on at the end, that sort of ‘impact’ bit: you bolted co-production into the project right from the start and that radically changed how I wrote my grants. I literally sat in community centres and people would talk to me about what they wanted to do, and it went into the case for support. That’s a very different way of working.

However, I did have ethical challenges and one that was difficult was how to create a structure that valued the knowledge, in our case it was about culture within communities, on the same level as that of academics. One thing that is hard, when you get your Je-S form and you’re applying for your money, is how you do that in the grant. One of the things I was trying to do in my grant was to write a book with communities rather than about them. This was inspired by a book called ‘The Other Side of Middletown’, which was written by a group of community members along with Eric Lassiter and Beth Campbell, where the community co-wrote a book about itself: it felt it hadn’t been represented in the literature. Anthropologists had written about this place, Muncie, Indiana, but only from a white perspective, and the African American community decided to write their own book. The idea of collaborative ethnography was extended to ethnographic writing, and I felt that was a very important turn in my code of practice. One of the things that was important was this idea of producing more dialogically centred and multivocal texts, and this idea of working reciprocally with communities to make sense of things together. That was a real turn for me.

We did the book, called ‘Reimagining contested communities’. We all sat around and talked through our ideas. The key was that the community partners were given the same level of financial support as the academics; the academics didn’t like that very much! The community partners loved it and did about twice as much work, and the time for writing was written into the grant. One of the things that was important about this case study is that there’s a co-writing structure: all voices are important. We also included artists and their work was reproduced in colour in the book, which is quite rare. We work with poets, we work with historians, we work with parents, we work with young people, and we’ve had multiple representations: visual, poetic, and artistic.

“Everybody holds the key to knowledge” – Zanib Rasool

I’m proud of this quote, it means a lot to me because it’s by Zanib Rasool, who I worked with as a community researcher, and she wrote this after 30 years of working as a community advocate: “Everybody holds the key to knowledge”. This idea of communities having knowledge is something that is important.

We also work with two amazing civil servants, and I have to say the civil service has been amazing all the way through my project. I’m working with Defra; they wrote a piece for our book about the mission of collaborative ethnography to bring the academic research endeavour closer to communities. I love this: “The questions of ‘whose knowledge’ and ‘who speaks for whom’ is an issue that should be asked of all research and indeed all knowledge claims.” That piece written by the-then DCLG is an important statement.

Takeaways from this case study:

• Building relationships take time. This is built on those five years previously of working in Rotherham on another project.
• Go where people are. I recently did a project here in Manchester, and we situated the meeting in Hume and not in the university. Don’t expect people to come to you.
• Always provide appropriate snacks. Young people like protein. Some of them don’t get enough to eat. I think snacks are one of the most important things ever.
• Writing is not always what people do. Try and give people opportunities to put things in other words – I often do recordings of people’s discussions.
• Do not assume that academics know everything, but recognize that some academics do know something; our scientists know a lot.
• Build communities within a model of horizontal knowledge production.

One of the things that’s hard about co-production is that it means that everybody has a say. That’s tough when you’re working with children and young people, in the sense that – and this is not to say that schools aren’t amazing places – schools rely on a kind of ‘yes’ from young people. One of the things we were doing in our project was encouraging another word, which is the word ‘no’. The idea was to explore, with a group of young people, the idea of feeling ‘odd’ in the world of education. It was led by Rachel Holmes, it was funded by the HRC. We had the luxury of three years working with the same group of children over time, using film to explore that. We worked with these children before lockdown, they were in years four and five, and they made short films in self-directed small groups – they did the filming themselves and then devised a presentation from the film, which they gave at a conference. Then lockdown happened. We returned to the school, and the children were now in year six. We did the same thing; the school gave us a week of filmmaking. We were very careful with our permissions around filming young people and young people’s faces. We’ve learned, particularly working with girls and young women, that young people don’t necessarily want their faces shown. We had a whole week of filmmaking, we had six groups with six people in each group, and at the end of the filmmaking we went round and in each of the groups one person said ‘no’, so we couldn’t write or disseminate anything. However, we picked ourselves up and we asked them what they wanted to do. They wanted to do a book. This is this idea: if you can’t take away data, what do you do? We’ve wrapped that into this idea of research creation, and we have written about that in an article.

Takeaways:

• Recognize that ‘no’ is a good word. I’m always happy when people say no because they need to, we felt that they need to. In Rotherham, one of the youth workers said you encourage them to say no.
• Work with consent. In most ethics committees they’re working with assent, but we work quite strongly for consent. I’ve got an amazing ethics team at Man Met who support the work that I do.
• Consider how you work with data from children: try and bring the data together with the children, which means they have to co-present, they co-author, their names are present if they want to be recognized and it’s a CV-building thing.
• Make ethics the focus of your project, not an awkward milestone and do not take pictures of children ever without explicit consent. I always ask.

Finally, this is a new project, ‘Voices of the future’, that puts children and young people as inheritors of a world at risk of collapse and climate change. We ask children and young people to design treescapes, as well as measure trees in different ways – laser scanning, diameter tapes, hands – to measure how much carbon trees are taking out of the atmosphere. However, we quickly realized when we constructed this – in fact the scientists realized – that this relies on a willing group of citizen scientists. Much of the NERC work that I have been encountering, impact work, public engagement work, does have this model. It’s a keen young person who is a keen scientist, but we thought that was a bit of an ethical dilemma, because it means that the ‘good children’ you’d like to invite get involved, and then what happens to the other children? One of the things we’re working on, and this is an article I’m writing up now with Mel Hall and Abi Hackett, is the idea of what a ‘good research child’ can do in a project. If you have your perfect child, what about the other children? Your notions of childhood are quite problematic. I’m quite interested in the children, the ‘naughty boys’, who climb the trees, who get covered in mud. You can learn so much from looking outside the ones who put their hand up all the time, but it’s something we need to think about in ethical engagement.

Takeaways from the ‘good research child’:

• Consider the practices you want to do and be prepared to change them.
• Don’t just have the children who are good answerers and put their hands up.
• Work with children’s capacities and timescales. I’m always interested in the children who work at different paces, who have different needs. In their ‘odd’ project we worked with a deaf unit, which was amazing.
• Don’t rely solely on languages as a form of communication; we found drawing to be a much more effective mode of working. I always tell my students: don’t use interviews, focus groups, and questionnaires with children particularly because they are very adult-centred.
• Don’t use children as a way of making your project more attractive. It’s seductive to have this lovely picture of a child. Don’t do that.

These are takeaways from my work:

• Think about what your data is reproducing, reflect on the assumptions lying behind your data. Whose assumptions does it support?
• Enable and support the people who say no to being in research: they’re great, don’t be sad. Just think, ‘hurray’! They’re people who are understanding what I’ve asked them to do and deciding not to do it; that’s fantastic.
• Consider whose voice counts and why. One of the things is the chatty children. What about the children who feel, who sense, to think?
• We work very much in multilingual communities, which is amazing, and with multimodal knowledge: that’s drawn knowledge. It tends to be less visible. Knowledge is not always encoded in reports. They’re very linguistic; films and images might be better.
• Recognize practices within the real world and decentre the sites and spaces of thinking. We had a meeting recently at Pitsmoor adventure playground in Sheffield and I felt that was one of my most successful meetings; meeting in universities is not great for doing co-production.

James Parry

I have limited experience in co-production, but I used to be an archaeologist and did a lot of work in local communities, and I saw a lot of what you say; there’s common themes. I’m sure both the challenges you’ve articulated and the solutions you mentioned would be applicable to a huge range of disciplines.

We’ve already got a whole bunch of questions. How do you ensure that all voices are heard equitably?

Kate Pahl

There’s different answers to that question. Budgets are the first answer. When I review bids, I look down the line budgets: are you paying people, and that includes young people. We’re working with people with refugee backgrounds, including young people, and recently they talked to Defra and we paid them to go.

The second thing is that the Defra team, the two of them, listened for a whole three hours to three people. Listening requires time, making it available is quite a skill. The person in charge, she had experience working with people with a refugee background and young people. So, time, money.

In terms of children and young people, there’s a lovely article called ‘It’s never okay to say no to teachers’ by Perpetua Kirby. It recognizes the constraints of school, but involves working with schools to create a space of practice – and that’s quite hard. It takes a lot of nerve. I went into film club in a school on Monday and I had a plan. Then Steve, who I’m working with, said, ‘Look, just forget it’. We didn’t do anything and the children made the film. Having that nerve, it requires so much that we don’t do, which is: not doing. Adults getting out of the way and that’s hard. Film club was way more experienced at filmmaking than I am. These were young people, year eight, but to be able to not do is hard.

Also, working multilingually. I’m writing an article about language and about the need to not work in English. It’s a thing that we need to shift, English as a mode, and it lands hard and it’s stressful.

James Parry

Two questions about funding contributors. Payment for non-academics and projects is a struggle and the biggest hurdle has been other academics: how do you bring them round? The HRC requires non-HI partners to be contributors, not beneficiaries. How do you get funding, how do you get academics and the funding agencies to say these participants are worthy of payment?

Kate Pahl

It’s not difficult. Sorry, it’s not difficult right now. I sit on lots of panels and the only thing we get cross about is if the co-research team are not adequately recompensed in the public budget line. The HRC particularly are working hard. There is a scheme they had for community partners as co-investigators, there’s a lot of different schemes coming out. I know the Young Foundation are doing work on communities as the instigators of research. The direction of travel is making those structures more equitable. Panels are keen to see people funded.

The thing that’s possibly problematic is academics not recognizing that and academics who expect their buy up to not match. I was so proud of the £69,000 that the community partners got for the ‘Imagine’ project and the academics got roughly the same in their buy up; the academics didn’t like it though! In the SRC project, we set up a great scheme at the University of Sheffield for one form of payment for everybody in the project. When they went to a conference, they got one payment of £120, whoever they were, and Sheffield enabled that. We do need to work with our finance teams to encourage them to think differently about how to do that.

James Parry

We’ve had a lot of questions about consent, particularly in relation to children. What’s the role of parents in consent, particularly ongoing permission such as for photography: do they provide general consent at the start, modified by the children’s wishes? Do you have a particular process of consent that you use with children?

Kate Pahl

This is very complicated. Let’s do the parents first. With the parents in the schools, when we come in, we send the parents out the form. The schools collect that and give us a list. That’s the most important thing, because there will be some children who are in care and can’t be photographed. That happens first.

We then do a very long set of sessions with children that take practically the whole morning, in small groups talking through the information sheet. This takes ages, particularly with year threes and fours. Then we go into the project and at that point, some of the children who have said no, because they love saying no, say actually I liked doing it and that’s complicated, so we re-do the consents. None of this at that point is going outside the school.

If we want to do something more, a whole new form goes out, a media consent form. One of the things that’s important is to do it all in slow stages. We also spent some time before in the school, working with the children. Some people would argue you should go in and work with ethics in place and I agree that’s an important thing to do. But for us, and for our other project in Aberdeen, what it enabled us to do is to get to know the children. We did some lessons about trees and hope, and we didn’t record anything, but it meant that they knew who we were, and they were quite comfortable with us and by the time we came around to doing our small groups they were quite happy, whereas part of the problem was they didn’t know what they were consenting to. My poor research assistant is still sad that we can’t collect any of that data and I’m like, no, it’s good, because they got to know us.

I was helped by some incredibly good people on the ground, a big shout out to Claire Fox from the ethics committee who helped navigate that. You need support for those things. The schools kept parental consents and kept us informed about that. We showed every film, everything, to the children and the school before it went out of the school. We were really careful.

I love ethics because it gives academics a good reason to work collaboratively. It’s almost like the reason. I was very happy when ethics came in, in the mid-2000s, because as somebody who works with children, I liked that attention. Work with different organizations, professional bodies: I use the British Sociological Association’s, British Educational Research Association’s, and the British Psychological Association’s guidelines a lot. Those guidelines are very respected, so I don’t just go in and say, “this is what I think”. I put a case study on the SRC’s website on ethical challenges to co-production and described a two-stage process where we work with community partners to construct the ethics forms. A big shout out to the University of Sheffield professionals in helping navigate that.

James Parry

We’ll now move to our next speaker, Professor Sarah Whatley from the Centre of Dance Research at the University of Coventry.

Sarah Whatley

I’m coming from the discipline of dance. I’m going to start by saying something about practice research. It’s one of the methods that we use within our research. It is a methodology: how the research questions are answered, how the new insights and knowledge are generated, and how the research is disseminated through practice. It is a valid mode of research. However, those of you from the creative arts are probably aware that despite decades of debates about practice research, there’s still questions around the place of practice in research. While it’s core to many disciplines, such as engineering, law, and medicine, in the arts and humanities we still struggle in many ways to make the case for why practice is valid as a research inquiry, even though it is core to much of what we do.

One of the challenges of practice research is that it often escapes citation conventions and so it disappears too quickly. It’s hard to access, particularly if it’s live work such as performances, or it is limited in how it can be accessed due to copyright or other issues, which may be related to ethics, that prohibit its wider distribution. However, practice research is a methodology that many of us in the field of creative arts adopt and can lead to high-quality research outputs, and can be core to participatory research as well. Some of you may be familiar with the Practice Research Advisory Group, which I’m part of, and we produced two I-hope-useful reports, which give a lot of information around where we are now with practice research and some pointers towards how we can do better in that field. These reports are openly available through the British Library.

I’ve put together a number of words here: co-production, participatory research, co-creation, co-design, because in the arts, and dance in particular, that there’s a lot of crossover between those areas. They all have similar properties. All of them honour the knowledge, experiences, and contributions of those who are partners in the research, which may mean professional artists, it may mean community groups, it may mean audiences, in Kate’s case it was children and many others, as well as other researchers.

In the arts, and in my field of dance, the borders between the research community and the professional practice community and audiences often tend to be very porous. By that I mean that many researchers also identify as artists, as practitioners, and so are deeply connected with those who are working in the professional art sector and with their audiences. There’s a lot of crossover there and these relationships can be very productive, and can be built on existing awareness of different working methods, and on trust, which is important. This can mean that researchers have easier access to a particular community or a setting, as the researcher is already part of that community.

However, that closeness does mean we need to establish important ground rules to ensure appropriate distance, mitigate bias, and ensure mutual trust. I keep using that word, ‘trust’, and it is important. There are also important considerations about what those working methods might be to ensure that those involved are protected, and that expectations are clear and transparent, so that the work is carried out responsibly, and respectfully. What does that mean, working respectfully, in participatory research? In the arts sector, artists and artists’ organizations are often working on very slim budgets with scarce resources. That work can feel very precarious, particularly in current times where there are limited funds for the arts; it’s probably true in other sectors.

Researchers, of course, we can often access research funding either from external funders or internally from our institutions. It’s important to recognize the labour involved in expecting artists, or anybody, to participate in research and to pay them accordingly. Funders need to know that that is important too, and I was glad to hear what Kate said earlier because I do think funders and particularly the HRC, which is also my primary research council, are very alive to that now and keen to see proper payment made for anybody who’s contributing to research. As Kate said, as a reviewer myself, I’m always looking for recognition from the principal investigator, from the research team, that they’re recognizing the need to pay for that labour that’s part of that research. Care does need to be taken to identify and discuss mutual benefit. It should be beneficial to and supportive of the artists and the organizations and not only serve the needs of the researchers and the research organization. That mutual benefit may mean the participants learn more about their working processes, they can gain new skills, new insights, new information about their audiences, perhaps, and it can be a support for their wider work. What’s also important is the role of advocacy: it can be that this sort of research can be useful for making the case for why the work is important. It can put pressure on funders. This is part of why the funders have made some changes, because they’re recognizing the good work that’s coming out of this field of participatory research. By extension, it also helps the funder to show the broader value of investment in this kind of research to central government. It’s a win-win for everybody, hopefully.

What might practice research mean at core? Well, it’s research that is conducted with and not on people and participants. It’s usually qualitative in focus. It involves those who are affected by a challenge, perhaps, or an issue and should bring about some kind of positive change.

Other kinds of methods can be useful, and I know Kate gave some lovely examples that aren’t involving writing. It can be about creating journals, diary notes, other visual ways of documenting experiences. The key is to ensure that the assumption of who benefits and positive change is rooted in the real needs of those who participate and not dictated or determined by the researcher alone. Importantly, the participants should not be seen as subjects, or worse objects, of study from which data is generated for analysis and recommendations, but rather they are co-researchers who were involved in the methods of analysis and are fully involved in determining any outcomes and recommendations. It can be effective as a method when it involves those who are seldom heard in other research methods, and those who tend to otherwise be marginalized. One concern, though, is that the research may not arrive at any kind of concrete outcomes and recommendations, they should not be forced or exaggerated, but on the positive side, it can be stimulating for everyone, leading to further partnerships, and it can lay the ground for some more extended research, providing the resources are available.

We’ve heard a lot about ethical matters. It is important to ensure that the research is carried out with full consent and clarity about who owns the research that emerges. This is not just about procedural ethics, but it’s about what ethics means in practice. I’m always discussing what ethics means, because it can mean very different things in different contexts. It’s a point of discussion and debate rather than simply a process we need to go through. It does mean being aware of individual needs, particularly if working with vulnerable participants, avoiding extractive methods for collecting research data so the research is truly collaborative from the start.

It’s important to be aware of different economical structures and timeframes. Particularly in my work with artists, a research project may run over a very lengthy period so scheduling that co-participation activity may not fit easily with artists who tend to have to work more flexibly and may have to make shifts to working practices at short notice. Part of the consideration about how to carry out the research is how to build in flexibility, as well as being responsive to the reality of what time means for those working in professional practice. A Gantt chart may work for a research team, but planning over a long period can be a difficult commitment for artists and organizations. Assuming a long-term commitment to a study can be challenging, and an hour of researcher time may be very different from an artist’s hour of time. It may be that artists and organizations are less interested in, for example, co-authoring but it shouldn’t be assumed that the intellectual property lies with the researcher alone. We have to have clarity about what is generated through the research and what happens to that research, and to consider different modes of dissemination. Assuming that artists and organizations want to get involved in academic publishing may or may not be appropriate. Things like trade press, blogs, or podcasts can be much more accessible and mutually beneficial.

I’m going to talk now about one example, it’s the first phase of a project that I’ve been working on. We’re about to start the second phase, funded through UKRI, of the trustworthy autonomous systems hub. Two of the dancers who are working with us are Tania Earhart and Willie O’Brien, and this project involves participatory research methods. It’s based primarily on exploring the experience of these disabled professional dancers, who happen to all be female, who are prosthesis users, and how they may have more control of the aesthetic design of their prosthesis, which as we discover can perform different functions such as costume as well as different artistic expression, and not just be a tool or technology to normalize their body, and the production after that of a 3D-printed prosthesis. The research, which was carried out in collaboration with colleagues at the University of Nottingham, involved introducing the dancers to digital processes that were new to them, such as motion capture, 3D design, and to the researchers who are experts in operating those technologies. That involved working with computer scientists and engineers, as well as those of us who are dance researchers. This was an interesting project for building these skills. At the root of this was building trust between us and the dancers. It was important that the dancers and their idiosyncratic and individual practices were core to the research and hence why participatory research was the method we needed to use. The research derives from their expert practice, their practice is researchful.

But here I want to make a subtle distinction. The research is not practice research, as a research methodology, but it’s drawing on research for practices core to the process. So its focus was on considering what it meant for the dancers to design their own prosthesis, what their needs are, for what purpose, and how those needs are determined by them, rather than by the design or the engineering process. Core to the project was working with a sector of the professional dance community that is, or at least feels, marginalized. Their needs are often not in focus. What did that mean in practice? We needed to ensure that the research met the needs of the dancers. We needed to think about how to make a democratic or a safe space. A university environment can be quite alienating for those who aren’t familiar with that space, so we needed to think about working in their space.

The gender divide: our colleagues at Nottingham were male. The dancers are female. It can lead to unspoken, but felt, power relationships that we needed to acknowledge. We needed to think about how to organize time: we were thinking about the theory of ‘crip time’, working on ‘dancer time’, and thinking how to set up the space so it was more familiar as a working environment. Some simple devices like all of us sitting on the floor were a way of equalizing the environment. We allowed the dancers to lead the discussions, giving space for their experiences and reflections to lead rather than what was observed by us. We asked questions that were open-ended to encourage their feedback, however relevant or otherwise. We needed to rethink modes and methods of our user testing, our working protocols and settings. We needed to rethink traditional design assumptions. The dancer was not performing to the technologist, who is observing and driving the computer program. We needed to encourage them to believe that they are real stakeholders in the research by respecting their lived experience, they after all are the experts, and that meant also considering appropriate language, how to speak about the work. There is already a level of trust between ourselves and the dancers, as dance experts. But other figures, other authority figures can feel rather scary at times. We did need to translate specialist language where it was needed, and we needed also to acknowledge that their participation ranges from informing the research to taking more of a leadership role in shaping the research and the process of shared decision-making. The dancers were after all co-researchers and we did invite them to co-present and co-author, where appropriate, and acknowledging the labour involved, and we did pay them proper artists’ rates and these are artists’ rates based on what they earn through their artist work. It was built into the budgeting and we made sure that everything was covered appropriately.

What did the research reveal through this participatory method? Well, it revealed that traditional design and technology methods do not often consider the lived experience of those who are testing equipment. The research also challenged some of the orthodoxies of methods that focus on data capture. A brief example: using a motion capture suit, which is traditionally designed for bodies that have full limbs. How do you then rethink the whole process of motion capture? Algorithms that we were drawing on tend to have been based on a normative assumption of human motion. All of those working protocols needed to be adjusted. The research also revealed what a prosthesis is for those who use them, and this set up implications for the 3D modelling and printing. The dancers themselves had an opportunity to think about their relationship differently with their prosthesis, as a creative partner, as a costume, and not only a functional device, and it did provide some agency in their ongoing relationship outside of this project with their prosthetists and other health professionals that support them.

Normative methods and traditional power structures in that dance-technology interface were challenged and to some extent rethought. It led the research team, all of us, to a greater commitment to diversity in what can be quite a male and ableist research environment. The dancers did have new skills and were able to share those outcomes with their communities and to attract new audiences. It shows the benefit to all of us, the value and purpose of participatory research.

James Parry

You said the outcomes of research have not always been clear initially. Is that a challenge if you receive funding for research?

Sarah Whatley

When you put your bid together, you are looking towards potential outcomes and outputs, but it’s important to recognize – and if it’s there clearly in the bid and the proposal as you put it together – that this is something which is more speculative and the outcomes can’t be overly predicted, and new things might emerge that you weren’t expecting. That’s something that we’ve come across many times, that what you thought might emerge takes a bit of a different route and more interesting things sometimes emerge. A funder does want to see that good things emerge from the research, but I’ve never had an issue with a funder saying, “well, you said you’re going to do this and you did that”, because what we come up with is often more interesting than what we might have predicted when we started the work. It’s about making sure that the proposal as you put it together is placing emphasis on this participatory part of the research method and by definition what emerges isn’t necessarily predictable.

James Parry

How can you document and disseminate non-concrete outcomes to funders, partners, and institutions? Part of your answer might be that you can let people know in advance way the research is being done, but are there other approaches that you can use to avoid push back when you’re disseminating your outputs?

Sarah Whatley

Funders are now much more open to diverse modes of dissemination. If you have developed some data, which you can make openly accessible, that’s excellent and has broader impact. But my experience at least is that funders are getting much more interested in diverse forms of dissemination. It’s part of the way in which funding is going, it’s acknowledging the value of working much more directly with participants and that therefore the research we do has to have benefit to them. Just publishing in academic papers doesn’t necessarily have the reach and the impact into the communities that we’ve been working with, and that are important to the research that we’re doing. We do need to think imaginatively about all of those different modes and often they come from the communities we’re working with; they’re telling us better modes of dissemination. Funders are excited by that.

James Parry

If participants are seen as co-researchers, what does this mean for traditional avenues for obtaining consent to participate: information sheets, consent forms? If they’re co-researchers, how do you navigate the issue of consent?

Sarah Whatley

We must get consent and we have to follow our institutions’ methods of gaining ethical approval and going through and making sure that we’re doing everything ethically correctly, and morally correctly. Very often, one can author that consent, the participant information sheets, and the consent sign off forms, but it can be in a negotiated forum. I support the idea that rather than we go in and we sit down, and we share the paperwork, and we encourage everybody to sign it, that we talk first about: what does ethics mean in this work? What are we talking about in terms of ethics, and how are we going to deal with any ethical issues that might come up? Part of that is about negotiating and navigating the requirements of our institutions and making sure that we’re doing things correctly and properly, but it’s about also bringing our participants into that process of thinking through ethics. The difficulty there sometimes is timing, because at what point do we start the research? I’ve had some challenges with that, because I’ve wanted to spend time with people, getting to know people, and some interesting things emerge in those early conversations. And you think, “Oh, that’s wonderful information. I want to hold that, I want to record that, I want to capture that”. But we have to balance that with what will become quite a barrier to open conversation, when you start producing pieces of paper and start to ask people to sign. It’s always a balance: how do we negotiate this tricky field of ethics to make sure that we are all working absolutely, soundly in terms of ethics, but without it becoming a barrier to the kind of collaborative research and the co-research that we want to do?

James Parry

A final question: for pay for artists and other participants, if they’re based in a country where pay is very low in comparison to the UK, how do you navigate that? What if a participant is on benefits, and therefore payments may impact on what benefits they receive? How do you navigate those kinds of complexities?

Sarah Whatley

The issue around benefits is tricky. Bluntly, on a case-by-case basis, you have to have that conversation. We found some workarounds, dare I say? Because particularly if you’re working with disabled artists, as I’m working a lot with disabled dancers over many years, it might have a real impact on the benefits they receive if they’re then part of a project where we wish to pay them. We’re having to find workarounds, there’s not an easy solution. In very simple terms, if there’s ever a simple answer to this, we always look at what are correct artist rates, and that is our baseline, that’s what we want to offer always. Sometimes we’re able to work with a company, and those of us in institutions know that the process we have to go through to pay independent workers is complicated enough anyway, when there are other added constraints on the kind of pay they might receive. We have in the past worked with organizations those artists might have a connection with, so that that funding goes through the organization and the organization can pay the participants. We’ve found a series of workarounds, if I’m honest. I’ve not worked with artists from overseas. There are other issues there around visas and we get into other difficult territories there.

In my institution we have a brilliant Research Support team who find their way around some of these tricky issues, and because we do a lot of work with the artist community, they’ve built up some good expertise around working with people with different kinds of working relationships, whether they’re freelance, independent, or on benefits. We’ve got some good expertise, but it takes time to build that up and I am very grateful to my support team for that. The role of professional services staff in this type of research cannot be overestimated.