DOING RESEARCH INCLUSIVELY: Guidelines for Co-Producing Research with People with Disability

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The Guidelines set out key benefits, principles and strategies that underpin the DIIU and UNSW’s approach to co-producing research with people with disability. The content is drawn from a comprehensive review of the literature, the experience of leading inclusive researchers at UNSW, and DIIU’s community partner organisations of people with disability.

The Disability Innovation Institute at UNSW Sydney is committed to a process of co-production to underpin our approach to inclusive research. In inclusive research, people with disability are involved not just as participants, but as co-creators of knowledge. The Disability Innovation Institute recognises that inclusive research:

  • Promotes the inclusion and well-being of people with disability.
  • Explores issues that are or are likely to become important to people with disability, drawing on their experience to shape research process and outcomes.
  • Recognises, fosters and communicates the contributions people with disability make to research.
  • Provides information that people with disability can use to campaign for change. 

Please find below the 2020 Guidelines for Co-Producing Research with People with Disability

Available to download in the following formats.

 

DIIU Doing Research Inclusively - Guidelines PDF (17 pages)

DIIU Doing Research Inclusively - Guidelines Word Version

 

DIIU Doing Research Inclusively Easy Read PDF

DIIU Doing Research Inclusively Easy Read Word version

 

DIIU Inclusive Research Factsheet PDF 

DIIU Inclusive Research Easy Read Factsheet Word Version

 

If you require any of the above in additional formats please email us at diiu@unsw.edu.au

 

On Wednesday 26th August in conjunction with the Division of Equity Diversity and Inclusion the DIIU presented a discussion and preview of its Guidelines for Co-Production of Research with People with Disability. To access the online recording please find the YouTube video below with Auslan, Closed Captions along with the transcript. 

    Speakers in this session included;

    • Professor Jackie Leach Scully, Director of the UNSW Disability Institute and Professor of Bioethics at UNSW introduced the online launch of the Guidelines, provided the Acknowledgement of Country, and spoke about the importance of having academic researchers understand and practice inclusive research, including co-design and co-production.
    • Professor Eileen Baldry, UNSW Deputy Vice-Chancellor EDI, discussed the importance of inclusion and co-production for research culture and practice at UNSW.
    • Graeme Innes, one of Australia’s most recognised and respected human rights activist, explored the value of co-producing research with people with disability and its potential for producing knowledge, evidence and solutions for the real-world issues facing people with disability.
    • Professors Leanne Dowse and Iva Strnadová, the authors of the Guidelines, introduced the key principles driving co-production in research and the ways these are presented in the Guidelines and lead an interactive audience QnA.

    If you have any questions regarding the Guidelines or the online launch recording please email us at diiu@unsw.edu.au

    Please find the transcript from this online event below an an additional accessible format. 

    Transcript - Wednesday 26th August 1.30pm.

    LIVESTREAM: “Co-producing research with people with disability - University and community working together”.

    Jackie Leach Scully

    Hello and welcome to the online launch of our new Guidelines, “Co-producing research with people with disability - University and community working together”. This event is presented by the Disability Innovation Institute at the UNSW, Australia, and the division of diversity and Inclusion. I am Jackie Leach Scully, Director of the DIIU and Professor of Bioethics at UNSW. I would like to start with an Acknowledgement of Country that is customary in Australia, I would like to acknowledge the traditional custodians of the land from which I'm speaking to you now and the Gadigal People of the Eora Nation, the traditional custodians of the land on which UNSW Kensington campus sits. I pay my respects to the Elders, past present and future and extend that acknowledgement to all Indigenous people with us today. As we share our knowledge, teaching, learning and research practices across our universities, we pay respect to the knowledge embedded within Aboriginal custodianship of country.

    If audience members have any questions during the event or if anybody has difficulty and can't use the chat function, please email us or if necessary, use the telephone number below. But please only use this number if it is absolutely required so it is available for those who really need it. The number is (02) 9585 9114. For closed captions, see the closed captions button at the far right bottom of the screen, you will be able to turn this on and off. Please note we have two wonderful Auslan interpreters.

    The audience Q and A will be conducted via the YouTube live chat function and that's at the top right corner if you are on a web browser. If you are on a mobile device, the function is directly underneath the video. So please post your questions here and they will be passed on to the presenters. And please feel free to join the conversation online. You can see our Twitter handles here on the side of the slide. And for those listening, they are

    @JLSbioethics

    @IvaStrnadova   

    @DisabilityUNSW

    @l_dowse

    @Graemeinnes

    @eileenbaldry

    All these handles and hashtags have been emailed to you as well. A word about the DIIU, it is a world-first initiative focusing on disability research, education and knowledge exchange and we pride ourselves on undertaking work that is radically inclusive and that crosses disciplinary boundaries. Our approach is to see disability not as a problem to be solved, but as an integral part of the human condition, to be encountered and engaged with, rather than feared. And in this light, I'm delighted to be here to open this launch event. Because at the heart of the DIIU's work is the idea of inclusion and particularly inclusive research. Knowing that relatively few academic researchers are yet familiar with the practices of inclusive research, including co-design and co-production. We at DIIU have produced a set of guidelines to help those taking their first steps into the terrain of doing research with people with disabilities.

    It is my great pleasure to introduce to you our two speakers. First of all, Graeme Innes, an Australian company director, lawyer and public speaker who has been a human rights practitioner for 30 years in NSW and Western Australia. Graeme has participated in the development of national and international Human Rights Institute. He was Australia's Disability Discrimination Commissioner from December 2005 until July 2014. And during that time he served as Australia's Human Rights Commission for three and a half years and Race Discrimination Commissioner for two years. In 1995 Graeme was entered into the order of Australia as a member and in 2003 finalist in Australian of the year and in 2015 he was awarded an honorary doctorate from the University of Canberra and appointed adjunct professor at the University of Sydney. More personally I've got to know Graeme as chair of the Institute's Advisory Council and I can vouch for his commitment and support of the Institute and the idea of inclusive research. After Graeme, we will have Professor Eileen Baldry who is well known at UNSW as Deputy Vice-Chancellor for equity, diversity and inclusion and Professor of Criminology. Some of her important academic research focuses on issues of mental health and cognitive disability in the criminal justice system and she is familiar with the importance of inclusive research. Now we will go over to Graeme Innes.

    Graeme Innes

    Thanks, Jackie. And again, I acknowledge the traditional owners of the land on which we all meet today. I noted the fact that one of the advantages of this technology is that we can be hearing from various different lands. I am on Bundjalung land near the Queensland border, so I acknowledge the traditional owners of that land in their Elders, past, present and emerging. But I also acknowledge the traditional owners of the various lands that we are on attending the seminar. I'm old enough to remember that a click-through was what you did at the turnstiles as you went into the Royal Easter Show or cricket at the SCG, and I've given it away, I grew up in Sydney. Now click through has an entirely different meaning. One of the main aims of a marketer for a website is click through. I see a web link on social media such as Twitter or Facebook, that I think is interesting, and click the link. Then I encounter the things that make me leave the website as fast as I arrived. Having my screen readers say, “image, image, image” to me at least 10 times before I hear anything else. 'The Sydney Morning Herald' website is a classic example of that. Having the skip to main content weblink take you to exactly where you were when you clicked it is like the train that never left the station. Or even worse, one that leaves the station but travels in a loop, taking you back to where you started. A complete waste of my time. Or thirdly, asking me if I will accept cookies. As an Australian, I'd prefer biscuits but the crumbs will clog up my Braille display. I understand why you use cookies but please set the default as essential, so you don't spam me and I don't have to do turn off 15 different options that I'm not interested in. I will stop giving these examples so you don't go to the chatbox to type, "OK, Baby Boomer." I am one of the people that these website operators are trying to sell to so it is important I am satisfied in the same way as other customers and I didn't even walk in not wearing a mask and demanding my human right – sausage sizzle, anyone? I could have gone on and on with more examples and in fact, I did, giving 10 in a recent blog that I wrote but I think the point is made. If websites are not designed for everyone including people with disabilities such as myself through screen readers, then we will be excluded by those websites. Design, whether buildings, websites, transport systems or any other part of our life, will not be designed with us in mind unless we are part of that process. This has been the case for centuries.

    Sports grounds and places of entertainment were designed by men, and you only have to see the queue for the women's toilet to know physiological differences were just not considered when toilet allocations occurred. Until recently, buildings were designed with only steps for access. This was probably because architecture classes took place inside those buildings so the people who may have raised a concern about that – people using wheelchairs or other mobility devices – left outside the front door.

    Signage is usually designed with words without pictures because people with learning disabilities who would have expressed a view were not given a voice. One of the reasons I agreed to be chair of the Advisory Council for the Disability Innovation Institute at the University of New South Wales is: they really get this point. And that was clear when Jacky made her opening remarks, and fundamentally, this is the reason we are here today and the foundation of these guidelines that have been launched. If you don't involve people with disabilities in your research, then, as experience will tell you, we will not be covered by the design. With the result that we will not use the design or you will have to retrofit to take our needs into account. That will cut into effectiveness, profit or perhaps even both. On the other side of the coin, there is real value in co-producing research with people with disability. We get a benefit from your design, and you get a benefit from our life experience, and this usually means the outcome is far better for the whole community, not just for people with disabilities. Examples really proliferate in our community – level access, curb ramps, the telephone, captions, audible traffic signals. I don't have time to name them all. Including people with disabilities who also have the potential to make contributions which will add to your design. You will get the benefit of our real-life experience which will broaden the range of practical solutions for the problems you are looking to solve with your research. But because we have not been included in your research before, you probably don't know the best way to include us. Well, to grab the old advertising slogan, have we got a deal for you? The speakers to follow will show you how the guidelines launched will assist you in this process, and guess what? The guidelines were designed in conjunction with people with disabilities, so our issues have been taken into account.

    I want to finish with a quick story from Michael Small, which I regularly use during my time at the Human Rights Commission where Michael and I worked. Eddie was a man who used a wheelchair and he also had one arm who used to love going to the casino when it first opened in Sydney and spent a lot of his time there gambling.

    When a new casino was being designed the lawyers told them it would have to be accessible and compliant with the Disability Discrimination Act. "That is alright. We will ask Eddie. He is a person with a disability." The casino was beautifully accessible for one-armed men using wheelchairs but hardly anyone else with a disability got a look in. Don't design for Eddie. Use the Guidelines and design for everyone. Thanks for the chance to speak with you today.

    Eileen Baldry

    Good afternoon, everyone, and I would like to add to Jacky and Graeme's welcome and acknowledgements, my own. I am Eileen Baldry and I acknowledge the people on whose land I sit at the moment, the Gadigal people. My own. I acknowledge the Elders past and present. It is an honour to be part of the Guidelines launch this afternoon. As Jacky explained to you earlier, the DIIU sits at the moment in the Division of Equity Diversity and Inclusion and is a perfect fit for us because inclusion is one of the heart foundations of our division. The way in which we want these guidelines to be embraced and used is that they become an integral and intimate part of the research, the tools, the approaches that people at UNSW and then we hope everywhere in Australia and the world will use.

    These Guidelines have a framework which showcases the way in which inclusive research and coproduction is so very important and so essential. Graeme gave us excellent examples, both personally and of his knowledge and his experience, so let's look a little more closely at UNSW because this is where we are launching these guidelines and this is where we want to ensure that we use them and we enable people to co-design research and work. So, perhaps the first thing to focus a little on is why inclusion is central to UNSW. Inclusion is a priority in UNSW's 2025 strategy and is central because we recognise everyone should have the option, the opportunity to be equally included in the work that the University does, in teaching, in research, in being a student and participating. Without inclusion, we don't get the best of what the rest of the world and what humanity has to offer. So, inclusion is very, very important, but if we don't know how to include everyone, then we're not necessarily going to be able to do it well. And this is the particular case, as Graeme said, “For people with disability in knowing how to best include people with disability and people who otherwise might not be included in the research”. So, how do we do that? We are embracing inclusion in our teaching and learning at this university, trying to be much better than we were in the past in how we include everybody in their learning and teaching and the way in which that becomes part of our everyday life. So, these Guidelines are really important for us. As you heard, they are the first of their kind to bring into focus inclusion in the research context at UNSW. Many of our researchers at UNSW have for some time been practising this inclusion approach, but this is the first time it has been brought into a framework and into Guidelines. And so this is an opportunity for us at UNSW, for the DIIU, for EDI, for our wonderful researchers, our wonderful students, our collaborators who have a disability and those who do not. It is a way for them to become leaders in this co-production of research that includes people with disability and maybe about disability.

    One of the things that I reflect a little on as I come to the end of this is how important in the research work that I and some of the people that you are seeing today have been doing over quite some time. And that is of listening, hearing, reading, understanding what it means for people with disability, for people from diverse backgrounds, for Aboriginal and Torres Strait Islander people to participate. It means that they are genuinely part of the solution and that they provide the solutions, and this is a really important aspect of understanding how we want to move ahead, and these Guidelines provide us with a wonderful framework and approach by which to do this. They emphasize the importance of inclusion and co-production for our whole research culture, for the whole way we approach it and for the practice of our research across UNSW and with all of the people with whom we work. And so, I would now like to introduce to you the two next people who are good friends of mine, who are part of our UNSW community, Professor Iva Strnadová and Professor Leanne Dowse. Thank you.

    Leanne Dowse

    Hello, everybody and Thank you, Eileen and hello to Iva. Iva and I will share a couple of issues, not so much the exact content of the Guidelines which I hope you will have had opportunity to look through in detail but to talk to you about the process and thinking that is really informed what we have for you today. I would like to acknowledge our colleagues who work together with us to produce the Guidelines and I would like to acknowledge our colleagues and Terri Cummings and Jacky Leach Scully who have contributed in their own ways to bring this piece of work to fruition.

    As you can see what the Guidelines do is draw a relationship between what we understand to be inclusive research, the guiding framework for the work of the Institute and how this actually relates to what is now called, “Co-production”. That might seem like a small question but in fact, it ended up being quite a big question. When we started out in the process of developing these Guidelines. What we recognised is coproduction is now becoming a Co-design on becoming key buzzwords if you like in all areas of research and so we really spent some time trying to grapple with what coproduction means in the context of inclusion.

    It's important to recognise there is often confusion or conflation of what these ideas are. For us, it was quite a major task. What we wanted to do at the outset was to try to understand how co-production as a technique or strategy or method can align with a positive approach or a practice approach to inclusive research. Our work on the developing of the guidelines has been to align what is known about production or knowledge production in the academic context, with what we understand the academic literature says about codesign and to apply these insights to guide our own practice and we are hoping for the practice of many of you who may use our Guidelines.

    One of the things that we immediately found, we really wanted to look into the literature, which we did. This is the work presented here, grounded in a systematic review of the Co-design and Co-production Literature. And the first thing that emerges is there are lots and lots of different definitions of Co-production. What is Co-production is quite an intangible thing. It's one of those concepts, you know it when you see it and everybody thinks they understand but in fact, there are a lot of variations in what Co-production means. This has become increasingly important, not only for our work as inclusive researchers but in the ways funding bodies are requiring evidence of co-production and Co-design with populations who are stakeholders in research. It's really important to be clear about what that is. One thing we have to, of course, understand about Co-design, is that it has essentially emerged in the field of service design, its original ideas are not initially developed about research, but in fact about how to get service users involved in the design of their service. In a sense, we try to understand the principles that have been developed in the academic literature and transpose them into the context of knowledge production and disability. In doing this we drew on the review of the body of evidence around Co-production, on the views and experiences of a whole range of diverse people. I'd particularly like to identify those groups as being disability organisations, disability representative organisations, our co-researchers with disability, our service provider colleagues, and particularly our research colleagues who have experience in inclusive design. All of these people and all of these groups have had some input in terms of their interest.

    What I wanted to do is also talk quickly about terminology because one of the other issues that is very clear when we talk about co-production is who we call people, and we have grappled with this in the development of the principles and strategies that we have identified in the guidelines. As you know, there are lots of different terms used to denote the different roles and contacts that people play in the process of research. And no less in the process of co-production. It's important to be clear on naming these groups, in a sense, because each of our groups brings a particular set of contacts and interests to the research agenda and the research endeavour. We have made the distinction based on lots of information we have looked at, to go with terminology that clarifies that there are those of us on the side of the camera, if you like, called academic or professional researchers, we essentially do research for our jobs. And we acknowledge there is a range of other names applied to the different sets of stakeholders on the other side of the equation. And here we talk about participant researchers or community researchers. We have opted for the terminology, “Co-researchers”. Located in the community, within an organisation or service provider or government, that is the key distinction. It's important to make that distinction in the effort to understand that all of us come to the research endeavour with a set of interest and also with a set of different constraints and opportunities. And we hope that just understanding those things often are some of the early key stumbling blocks in co-production is about who has what sort of interests and what interests are at stake. It's also important to note that when we use the term “Co-researcher”, we are avoiding words like “Participation” and “Participant Researcher” because participation we understand is a very different thing to the process of Co-production.

    Participants in research tend to be those that arm's-length who don't have a real stake in understanding. What is Co-production? Essentially what we identify is co-production, as you will see, we understand that it is an approach for the development of collaborative and collective decision-making. Which involves changing the relations of research which traditionally separates users and producers of research. And that brings together groups of people who have a shared interest in ethical knowledge production and creation about disability.

    Next, we will say that one of the things we have done in terms of looking at the body of work on co-production is to look at why we would actually do co-production. What are the benefits of co-production for the stakeholders involved? We understand that benefits accrue to different stakeholders in research in different ways. One of the things we understand inclusive research and Co-design to do is to promote inclusion, as we have said, to explore issues that are more important and likely to be very important for people with disability themselves, to foster collaboration, and also to provide information around key issues of lived experience. These are the overall driving factors around which we would be wanting to encourage Co-design and Co-production. When we do that, of course, we are seeking a certain kind of benefit. And some of those benefits accrue to organisations, they might be benefits for researchers themselves, but particularly I want to highlight that benefits are most importantly about the nature of knowledge and the impact that knowledge production has. What we understand in terms of the benefits for knowledge production and also for the impact of the knowledge we produce has, is: we understand co-production allows research to be grounded in the agreed goals that speak to the lived experience. And what the central issues are affecting the lives of people with disability. We want to ensure in that sense that research is done in ways that are inclusive of and included value knowledge of lived experience. And that the research that comes from this place has relevance and is usable by people with disability particularly. There is a second set of benefits beyond the nature of the knowledge and impact produced and that it benefits for academic researchers. We understand this is researchers who are already doing that kind of work, we acknowledge the opportunity for growth and better understanding that undertaking Co-produced inclusive research brings to us as research professionals. Iva and I have talked about the way working this way has challenged us and we as researchers have important responsibilities, not just in producing or selecting topics, but in producing work that is grounded in the interests of people.

    One of the benefits of co-productions academic researchers are exposed to and are accountable for the decisions they make in achieving that approach. We also recognise that Co-production has benefits for our Co-researchers with disability. That can range from all sorts of new skills and training available through the research process, but particularly centralising their voices in the social enquiry process around disability. There is a platform for creating a shared understanding of issues with others. And also in producing and allowing access to wider networks of people. And finally, for organisations, as Eileen very eloquently put it and Graeme said, “It is really important that our organisation is, wherever we work and whoever it is we are beholden to, in a sense, take seriously the importance of making change happen in the world”. And we feel taking a Co-production inclusive approach is one of the very strong benefits of Co-design and Co-production. It allows organisations like our own university to forge stronger relationships with organisations and with communities that universities are identified as being able to service. And in some ways to open up avenues for funding which are not constrained by only academic merit or a range of things that members of the academic sphere have two. But, understand there are ways of working which organisations can embrace that is not just about competition for money, but actually about the value and importance of understanding and producing knowledge from lived experience. I will hand over to Iva who will talk about the nitty-gritty detail we have produced in the guidelines.

    Iva Strnadová

    Thank you, Leanne. Hello, everybody. I'm glad to speak in this part of the presentation about key principles of Co-production that we have identified from a broad body of literature, as Leanne highlighted. But also from our conversations with people with disability and their organisations. These key principles of Co-production are really critical because, as Leanne rightly put it, we need to understand exactly what Co-production is as a process and make sure the way we undertake it is not tokenistic.

    The key principles we drew from the literature are; “Power-sharing, Accessibility, Flexibility, Diversity, Reciprocity, and Transparency”.

    The principle of “Power-sharing” is about acknowledging that while people can play different roles in the research process, the project still needs to be grounded in a sense of shared responsibility and ownership. And that leads them to joint decision-making across every step of developing the research agenda and conducting the research.

    The principle of “Accessibility” guides organisations and people to address any barriers that may potentially prevent them from being involved in the research project. And Accessibility is not just about physical space, that's important to highlight. There are other examples that we can think about, such as how to share Accessible information among team members.

    The principle of “Flexibility” acknowledges that every Co-production project has its own specific context and demands. Also that every team member will have their different needs. So it is working out how to work best together to achieve the common goal.

    The principle of “Diversity” celebrates the diverse perspectives and skills that are brought together in different persons who take part in the research project. It's important to work out ways in which we make sure that we hear the voices of all parties included in the research and that we treat them with respect.

    The principle of “Reciprocity” is about recognising that everybody should benefit from Co-producing research and Co-producing knowledge. And this kind of recognition is not only financial but also an important consideration that we discuss in the Guidelines.

    The principle of “Transparency” highlights ongoing and open communication and the trusting relationship between the project members and the diverse stakeholders involved. We also felt it is really important to show and highlight in the Guidelines, to what extent these are. The Co-production really is a journey. It's an adventure and all of us involved can confirm this, beautiful adventure, but it is also a lot of work. And I think this really needs to be acknowledged as well. It really requires a lot of thought through processes right through the project. If somebody is planning to do Co-produced research with people with disability and is trying to quickly apply for a grant when the application is due in two weeks, I would suggest, don't bother. Because that is not feasible and you wouldn't do it justice.

    Somebody told me quite recently some advice they got about doing inclusive research and I really loved it and it was Laurel. I don't know if your listing but thank you. That was, “If you cannot do the research justice and do the inclusive research justice, then rather do not do it”. That is important.

    On the other hand, nobody is perfect and as Leanne said, “It is a learning journey and we are all learning how to do the best and make the best decisions with what we have”. We really talk throughout the Guidelines about what is good to think about when creating a research project, and there are many things that need to be thought through from the very beginning. Such as, setting the agenda, so what will be the study about? Ideally, this is Co-produced from the very beginning. It is also thinking together how the aims of the study will be achieved, and how do we apply for funds and how do we form a team and who is in the team and the stakeholders that need to be represented?

    It is important, in advance, I would argue, to think about how the project will be conducted and there are many practicalities within which we can be very non-inclusive. I would even say exclusionary, so it is important to think when we have a team meeting, how will they be run so we can really make sure everybody can understand, that meetings are accessible. It is also considering together with your research partners, with the Co-researchers whether there is research training they would benefit from or there is something they are not interested in or do not need. A very difficult area is navigating the whole ethics process. And here I think there is a big place for inclusive research teams to educate and inform ethics committees at the universities and beyond not to be worried about the risks that they are treating people with disability as vulnerable, something we often see.

    It is also about supporting the whole team, so not just Co-researchers, because this is really all about interdependency in the team. So, it is considering what emotional, practical, or research support might be needed, and one area in the lifespan of the research project that we feel is still underestimated.

    And that is the weighting of the research project and that is not only on the individual level, of course, which is also important, but also the outcomes of the inclusive and co-produced research. In terms of the question “Did the research bring something to the study that would not be co-produced from the beginning would bring?” It is important to establish the body of evidence and assessment of impact so that we can argue for the importance of Co-produced research. And co-produced research again is so critical, so important, but also we need to acknowledge it takes extra time and resources. Mind you, it is well worth it, and I would not do it in any other way.

    So, with this in mind, I would like to thank all the people throughout my career doing inclusive research all the Co-researchers I worked with because they really helped me to think through some of the issues that we have tackled within the Guidelines. I would like to encourage everybody who is going to embrace the Co-production in the research studies to engage with the Guidelines. Please remember the New South Wales Council of Intellectual Disability was brilliant in developing the Easy Read version of the Guidelines and Easy Read Summary and these are really good and very practical resources that can be shared within your research teams with Co-researchers. I would like to wish you all the best with undertaking your Co-production journey in whatever area you decide to do that.

    Leanne Dowse

    Thank you very much. Can we ask that we have a few minutes now for questions? If you have questions, please put them up in the box beside your YouTube feed so we have some questions. I wonder whether I might just start actually with a question. One of the questions I know that are always on people's minds is about the payment of Co-researchers, and we have spent long and hard and I'm sure many of you joining us today would have spent much time wondering how to resolve some of the very thorny issues associated with the payment of co-researchers. And so while we haven't… We (DIIU) don't take a position. We acknowledge of course researchers must be paid for the time. There is (just from our own experience), a great deal of administrative difficulty if you like that is accrued to how we work out payment. So I would really encourage a community conversation very much about the payment of Co-researchers.

    Some of the issues we grappled with in trying to understand the issues are about things like:

    “How universities are able to pay outside people?”

    “How research funders identify the different kinds of payments?”

    One of the things it comes down to is also grappling with:

    “How ethics committees understand the role of co-researchers?”

    One of the things we have experienced is (I think Iva will be able to comment more on) is helping ethics committees to understand the difference between paying a person to participate in a research activity, (which might be payment for an interview or use of vouchers or whatever it is). We can get into the voucher conversation later – but that it is a very different matter from working as a Co-researcher. It is a very different matter to working or participating in a research study and we have grappled with that in the sense that recompense to Co-researchers really should be about the work they do.

    And the major issue I guess we come across all the time is the ways that particular universities and their administrative process pigeonhole what people do. So it is very difficult to understand how to argue for the value of the lived experience, if you like, as a research skill. I really would value and open up that conversation because it is something we seem to be constantly coming up against in our own context and I know from colleagues that it is the case in other universities and how to really clearly communicate that both to funders and ethics committees is a really major issue.

    Iva Strnadová

    I would definitely say that for me, personally, payment to Co-researchers is just social justice. We cannot exploit people without paying them. The forms of payments, we (DIIU) unpack it and you can read it in the Guidelines. I think paying people with a disability who participate in the research is a question of social justice and they should at least be somehow acknowledged for their knowledge and sharing their experiences.

    We have a question here which asks: “What would you suggest to early career researchers who want to do inclusive research - but fear they will be criticised by the disability community if they do not do it perfectly?

    If I can tackle the question, Leanne, I don't think anybody does it perfectly. We definitely are trying and doing our best considering all the different issues we have mentioned in the previous presentation. My biggest advice would be – “Don't be afraid!” (Big smile). But, before you do anything, establish relationships. If you are working with a specific community, then establish a relationship, be with the people, with their daily experiences. Don't be there just to do that one research study you are interested in. I think that is really important. Be prepared that you really understand it is a relationship that will be long-term, but you need to invest in that relationship. So, it probably doesn't fit neatly in the funding Guidelines.

    Leanne Dowse

    I might add to that Iva also. One of the things that has worked in my experience is in Co-production is actually setting up sometime early on to agree on how conflicts will be resolved. Open communications are important, and feelings can be hurt easily without people understanding how or why. But, most certainly in my experience having an agreed procedure or process or an agreement on how grievances and issues can be aired and what the process is for resolving them. Because I think, in my experience, that is the way. We recognise we will disagree – that is the nature of most human processes. It is really a matter of being open and honest about a reciprocal process to resolve disagreements that I think is really important.

    Iva Strnadová

    Absolutely.

    Leanne Dowse

    We have a couple of other questions. Bingqin Li asks, “About payment for people on benefits?” We have grappled with this issue. I think our overall position (we do talk about this in the Guidelines) is there is probably no wrong or right, orthodox way to pay a person. People may work as Co-researchers as part of the organisational role so payment might be made to an organisation. But people may work as individuals and in that case, we understand that people have all sorts of issues around benefits and a whole lot of things. I think part of the problem is there is an assumption that was the case previously and so vouchers were used to avoid that. The issue is whatever is right for the Co-researcher should be right for the project. So it really is about that early conversation to work that out without making assumptions from either side.

    Iva Strnadová

    Absolutely. Could not agree more.

    We have a question from Karen Fisher, “It would be good to have some examples of coproduction for others to learn from since it has a huge variety of opportunities. Will DIIU build that type of resource too?”

    Absolutely. These Coproduction Guidelines are only the beginning. Thank you. We have big plans for what will follow so stay tuned. We have another question from Limin MaoIn: “In terms of ethics approval, how do you distinguish 'research' vs 'co-production'?”

    Leanne Dowse

    The burning question, isn't it? (Laughs). Certainly in the research that we have worked on together but in our previous, separate projects, we make a very significant distinction between those who are participants (and ethics committees are very used to when we talk about investigators) We include the co-researchers within as having “investigator status”.

    That seems to be the tidiest way to do it, in the sense that ethics committees do differentiate. One of the problems, of course, is then particularly in our work with people with intellectual disability, ethics committees requiring consent. How we get consent from our Co-researchers to be Co-researchers so we are in a bit of a virtuous loop and I don't know if we are entirely clear on it but Iva you might have something to say.

    Iva Strnadová

    This is an area where we need to educate our ethics committees because they still treat, researchers with intellectual disability as somebody between a participant but not completely and someone being a researcher but not completely being a researcher at the same time. Still. We have to have a consent form etc. etc. We also have to write a big justification as to why

    specific people have been selected and they will not be harmed. That is the education that is involved.

    Leanne Dowse

    And probably just to add to that. A call out to all of our colleagues, in fact, it is a recognition that our research practices are moving beyond our current ethics framework. So, I would hope that we would collectively want to see some action to perhaps influence the actual ethical frameworks that we currently are under and which ethics committees apply to the assessment of research. We did the same thing with the digital revolution in research and I feel like Co-production is the next cab off the rank. It probably needs a national conversation about recognising how Co-production fits within an ethical framework for research.

    Iva Strnadová

    Absolutely, I agree. There is Julie asking: “Thanks for the Guidelines, they are great. I was wondering if you had thoughts about using Co-production principles and the impact on research in the long-term?”

    Absolutely. Talking for myself, I think the co-production really needs to be at the heart of anything we do. We have an example of a current research project that we are part of, which is about bringing or giving voice to students with very high support needs. And part of this project is also evaluating the project and we are working with the co-researcher and have embedded these steps throughout the project. I think evaluation, absolutely. It needs to be Co-produced.

    Leanne Dowse

    A couple of other questions, Karen Burgess has asked:

    “While Co-production is very important and it is great to see more interest into disability in Australia - why not employ disabled academics to conduct the research and instead?”

    Karen, you may not have noticed in the early introductions, but the staff at the Institute itself, all of our researchers (with the exception of me), have lived experience of disability. And I think that within the academy there are issues about disclosure and judgements that people make about disability, who has a disability and who doesn't. So certainly those of us working in the inclusive paradigm are very conscious that our preference would be that nondisabled researcher allies take a backseat and disabled researchers themselves move forward with setting agendas and undertaking research. We certainly agree with that sentiment, thank you.

    Iva Strnadová

    Thank you.

    Leanne Dowse

    Is their time for another question or two? I feel like there are one or two final questions we might answer. Eduardo asks: “Is it feasible to have a database of possible collaborations according to research interests and needs for co-production?”

    I assume you might be talking about a database at UNSW, but you may also be aware that that is one of the tasks the DIIU is undertaking in terms of creating connections with a network of researchers. But also certainly you may well be aware of the National Disability Research partnership which has been recently funded through Melbourne Disability Institute. We have lacked that kind of national approach before in terms of being able to have a kind of national collaborative approach to working between the Academy and the community if you like. I would recommend you keep an eye on the National Disability Research partnership as a great first step in understanding how we can move together forward.

    Any other questions you'd like to answer? I think we have answered all of them. I am just browsing through.

    Okay, here we are. A question from Joe Tilly. Iva, I am assuming you answered that question about the impact and evaluation of the research in the longer term earlier?

    Iva Strnadová

    Yes, yes.

    Leanne Dowse

    I would say there is one more thing to say there, and that is it's important for the body of knowledge which we now know quite well and the body of knowledge that brings together disability studies and Co-production is actually quite small. So we would really encourage people who are undertaking Co-production in the context of disability research to also reflect on the Co-production process itself. We have drawn in these Guidelines on examples that are being drawn from other kinds of research, particularly research in mental health services, but a whole range of other health contexts, which lacks that social validity that disability research, inclusive disability research does. I feel like it's one thing to encourage people to do.

    One of my last messages for today, if you are undertaking inclusive and co-producing work, publish or write or air or blog about the experience of Co-production. Not just about the research itself and its outcomes and impacts, but actually about the impact of doing research in a co-produced way. Focusing on the research method literature, if you like, and the social justice literature about why research should be done using Co-production. And I'm very mindful that in many parts of the world now where Co-production has been on the agenda for a bit longer, many researchers roll their eyes in their head when Co-production is mentioned.

    I think it's important in the Australian context for us to really define within disability research particularly, what it is we understand Co-production to be and what it isn't. So that we don't get caught up in just another round of tokenistic processes where we have to demonstrate Co-production research has occurred for research to be funded. We are interested in developing a quality practice that is ethical and helps us all to move forward for the best interest of people with disability in our country.

    I think that may well be the last question we wanted to answer. Thank you all very much for joining us today. We've enjoyed presenting the Guidelines to you. As we mentioned a few times, you can find the Guidelines themselves on the DIIU website or the information is being provided to you there. And the slides from today's presentation are drawn essentially from the Guidelines themselves, all the information you will need, you will find in our Guidelines, in our Easy Read version, and also there is a short Fact Sheet which is helpful for people who have access issues.

    So, without any other information, I'd like to say thanks again very much for joining us today and please do provide us with your feedback on the Guidelines. We would be happy to hear anybody's experience using them. Or any other issues you identify. And stay tuned for what comes next in terms of our resources that the DIIU are committed to producing in this area. Thank you very much.

    Iva Strnadová

    Thank you, everyone.