Sharing knowledge is sharing power

We first heard of Barod, a Community Interest Company made up of people with and without learning disabilities, in relation to a review their members wrote for the British Journal of Learning Disabilities (Lewis et al, 2020). We recognised the additional insights the review provided, and instantly thought of our own British Psychological Society publication, The Bulletin of the Faculty for People with Intellectual Disabilities. Could a similar process –but prior to, rather than following, publication – be a fruitful addition?

Following initial discussions between Barod and The Bulletin editors, we sought agreement from the Faculty to pilot this project involving reviewers with learning disabilities. Barod's community earn all their money through real paid work, so required financial compensation for the time taken to review papers. The Faculty agreed that this would be an excellent use of our financial reserves. Barod were clear regarding the type of papers which their feedback would be most relevant for, and we agreed we would aim to give the group a choice between two potentially relevant papers each time, with Barod completing three reviews each year. So far, Barod have reviewed a total of five articles for The Bulletin, since 2022 following the process outlined in the image above.

What follows is a co-produced reflection on our experiences as an editorial team consisting of people with lived experience reviewing papers for publication. The editorial team aimed to increase co-production and accessibility of academic research and writing for people with learning disabilities. It has been a shared commitment of working in partnership in a way that is democratic, meaningful and allows a general commitment to co-produce papers written for publication. People with learning disabilities being part of the editorial team meant that they were able to review what is written about them, what is important for them and find effective ways of communicating this.

Here we reflect on the process from each of our own perspectives as Barod reviewers and Bulletin editors, highlighting what we each see as both the benefits of this experience to ourselves and to the field, as well as some of the challenges. We have also sought and included feedback from the authors whose work has received reviews by Barod. Direct quotes from reviewers and authors are presented in italics. Where there are themes across the feedback, we have highlighted these in bold.

Reflections from Barod

The Barod coordinator drives the process, receiving the papers from the editors, arranging the online meetings and typing up the notes and returning them to the editors. We usually meet three or four of us online to review and discuss it. In our own time, we read the article or easy read version of the article if it is too difficult to understand in order to familiarise ourselves with the article. What is noted is that this process is important in facilitating a truly inclusive approach to the review. The time is important because we process things in different ways. When we meet online each person has a chance to mention anything that stood out to them. We will often check everyone has understood what the paper is about, and explain anything that was not clear.

Ensuring material is accessible for reviewers has been an important part of the initial review process and allows for views and ideas to be generated and shared amongst the reviewers. As coordinator, my main role in the process is making sure that the Barod Research Team have understood the key ideas in the paper and have had an opportunity to express their thoughts about the paper. When we decide if we are going to review a paper I send out the easy read summary to the team and ask them to say yes or no. I produce an 'easier to read' or 'everyday' version. This is not always an easy task. I know the team and try to pitch the internal version of the paper to their level. Most of what I do is remove jargon and passive language, try to organise the information in each paragraph in as clear a way as possible, and make sure any important words have a clear description of what they mean. It is evident from reviewers' feedback that language is often an issue that is highlighted within the pieces available to review. I do not like the words intellectual disability because it sounds like you can't get better at thinking. I prefer the words learning disability. We check that the papers we read show respect to people with learning disabilities.

One of the main positives that reviewers highlight from their involvement in this process are the benefits for all involved: I like it when I can share things from my lived experience to help research be better. In addition to the value added by the team through bringing lived experience, reviewers also report having gained something for themselves. As an activist researcher I like to see what other researchers are doing. It helps me to think about my own work and to add to my knowledge and understanding. I work with liaison nurses and train people in 'looking beyond the label' so I understand quite a lot about how professionals think and work. This means I can see how research can help to make services better.

This process which draws so much on people's own lived experience is not without challenges: Doing the reviews did bring back some negative memories, so I have to be careful. Reviewers have recognised the importance of self-carewithin this process. Sometimes there are words I know will upset members of the team. We have to look after ourselves and sometimes I will suggest that we go for a walk after a meeting or do something to clear our heads and think about the good things in life. The team are good at letting me know when things are difficult and they all have people they can talk to where they are.

However, what is evident from all feedback is that the process has added value to all involved: I enjoy doing reviews, I find it interesting and learn a lot of new things. I learn a lot about myself as a researcher as well. I think that the general feedback from the editors and the authors has been good and positive and that they like Barod's reviews and like to hear our views on certain topics as we have interesting and different viewpoints. It has been informative to a range of research areas. We have reviewed papers about a self-advocacy group talking about physical restraint, about gym classes and about using psychological services. Reviewers have seen this as a positive collaboration. I am interested in co-production. I think that co-producing services is good. I think it is good that we have a say in what is published about people with learning disabilities. This is a sort of coproduction. I would like to see more papers written with people with learning disabilities rather than just about them.

Reflections from Editors and Authors 

As Editors for The Bulletin, we have seen the added value to reviews from Barod's expertise and lived experience. Authors have consistently and spontaneously expressed positivity and excitement about the potential of their papers being reviewed by people with lived experience, with one author stating: Even knowing that there is a possibility that your article will be reviewed by people with learning disabilities, means you are more mindful of writing in a respectful and accessible way right from the outset.

Specifically, authors who have given feedback have stated that Barod's reviews have positively changed language used in the articles. Reviews, provided using an easy-to-read format, have been clear and helpful, and have increased awareness of the (often unhelpful) use of academic language, jargon and acronyms in the papers, and where this can be reduced or removed. One author stated: I think working with Barod, helps us to focus on what is really important in the work we are doing and finding ways to communicate this in the most effective way possible.  

More widely, we feel that the lived experience reviews support our overarching aims to both increase co-production in our work in the Faculty, and to increase the accessibility of academic research and writing. As expressed by one author: We had a sense of a shared purpose/commitment with the reviewers of trying to improve the opportunities available to people with learning disabilities and this felt inspiring… Working in partnership with people with learning disabilities in this way, makes the process seem more democratic, more meaningful and more aligned with the general commitment to co-produced ways of working that we attempt to follow in our practice.

This process is not without challenges. There have been tensions from both reviewer and editor perspectives about managing timescales around reviews. Additionally, The Bulletin is a practise-based journal, which means sometimes the articles do not meet standards for more rigorous research methods. This can be frustrating for reviewers, for example if the papers presented cannot fully answer the questions posed due to a small or opportunistic sample recruited. This can mean that the feedback given by Barod to authors may not always be within the scope of feasible changes to be made for publication, however the review still enables authors to reflect more thoroughly on the limitations of their work in their write up, and may also provide further opportunities for reflections to take forward to future projects. 

Often the reviews written by Barod include broader questions that challenge our perspectives as academic authors and as Editors, for example how to reduce the formality in our writing to make it more accessible to those with lived experience, who the work really impacts. Following a review, one author commented: The reviewers set us a challenge stating "We would like to see self-advocacy groups reading this information and using it in their work. How can this happen?" That edition of The Bulletin was open access and so it could be shared widely, however there remains an ongoing challenge for the Faculty in relation to how we keep people with learning disabilities at the heart of the work we undertake, including regular engagement with self-advocacy groups and providing information in accessible formats. Regular input from reviewers with learning disabilities to The Bulletin is an important element of this engagement, as it helps us to not only improve the articles we publish so they are respectful and meaningful for people with learning disabilities, but also challenges us to think about how we do things across the Faculty. We welcome this level of scrutiny both in our roles as Faculty Committee members and as Editors, as it is welcomed by the contributors to The Bulletin.

Our key message

We all know the saying that 'knowledge is power'. Often, people with learning disabilities may not have had opportunities to share in academic knowledge, because it is not presented in ways that are accessible or easy-to-understand. Equally, people with learning disabilities are not always invited to share their expertise and knowledge of their lived experience.

We each started this process with our own individual lived or learned experience. The co-production has happened when we have each been invited to share our lived experience or learned knowledge with each other, in ways that make sense and give added value to each of us. We have learnt that sharing this knowledge, both ways, means we are sharing our power, and this makes each of us stronger through co-production than we are in isolation. We are excited to see what further learning comes from our partnership together, and we invite others reading this article and inspired to find out more, to get in touch with us.

Acknowledgements: We would like to thank the authors who received reviews who provided feedback on their experience to include in this article.

Authors:

Sabiha Azmi (a)

Bryan Collis (b)

Sophie Doswell (a)

Claudia Magwood (b)

Simon Rice (b)

Simon Richards (b)

Kate Theodore (a)

Hayley Thomas (a)

a British Psychological Society, Division of Clinical Psychology, Faculty for People with Intellectual Disabilities

b Barod Community Interest Company

Correspondence: [email protected] or [email protected]

Reference

Lewis, B., Richards, S., Rice, S. & Collis, A. (2020). A response to Bates, C et al (2020) "Always trying to walk a bit of a tightrope": The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships. British Journal of Learning Disabilities 48(4), 269-271.