AN EASY READ PDF VERSION OF THE ESSAY IS AVAILABLE HERE

Funders are increasingly asking for it.

Researchers know it improves research quality.

If feels like every week there is a new guide published on how to do it. Yet many academics feel they have not solved the complex problem of how to ethically involve public partners in research.

Our project ¹ “No research about us, without us: removing research barriers for people with learning disabilities” ² is led by an academic, Amy M. Russell, and a self-advocate, Gary Bourlet, who has learning disabilities. Funded by the National Institute of Health and Social Care Research, we set out to establish and evaluate a collaboration between academics, clinicians, self-advocates with learning disabilities and learning disability charities. We worked together to identify barriers to inclusion and co-production in research and approaches to overcoming those barriers.

Before we came together, our team had all seen lots of great innovation in co-production, but we were aware that there was little evidence on what worked. This sometimes resulted in tokenistic or disempowering involvement. We knew we wanted this project to be different. We wanted to put the process of co-production under the microscope and ask the hard questions about whether the research system can be adapted to be truly inclusive. In writing this essay, we agreed to share some practical steps that we took to ensure a truly equitable research approach and make some recommendations about how to make research more inclusive.We also agreed that we would be honest and open about the times we made mistakes.

It’s our belief that if you find ways to make research accessible for people with learning disabilities you will have made it accessible for most of the population.

Why is our research important?

We know that people with learning disabilities face unequal treatment in the NHS compared to other people. They experience barriers in accessing healthcare and have poorer outcomes from the healthcare they receive. During COVID younger adults aged 18-34 with a learning disability were 30 times more likely to die of COVID than young adults in the general population.

Despite accessing mainstream healthcare like everyone else, people with learning disabilities are often excluded from research. This means that we don’t know what the best treatments are for them, or what research is most important to them.

A graphic using tiny white squares on a black background to show the shocking number of days make up 18 years. The graphic is accompanied by text that reads: a woman with a learning disability is likely to die on average 18 years before a woman without a learning disability. This is 6570 days. That's a lot of cups of tea, chats with friends, days at work, watching favourite tv programmes, country walks…

Image created by Catherine Stones, University of Leeds: A graphic using tiny white squares on a black background to show the shocking number of days make up 18 years. The graphic is accompanied by text that reads: a woman with a learning disability is likely to die on average 18 years before a woman without a learning disability. This is 6570 days. That's a lot of cups of tea, chats with friends, days at work, watching favourite tv programmes, country walks…Created for the project ‘Reasonable adjustments for Learning Disabilities to Diabetes services,’ funded by the Health Foundation. For more information see Diabetes UK: Improving care for people with diabetes and a learning disability 

To address these health inequalities and improve health and care policies we need better, more inclusive research - we have to include people with learning disabilities.

People with learning disabilities are often deemed ‘vulnerable’, but this vulnerability is not something inside that person. It is caused by systems and barriers that exclude them. This focus on barriers and systems that disable people is known as the Social Model of Disability.

Involving people with learning disabilities in research challenges the systems that create these barriers and make people vulnerable.

For some people with learning disabilities their choices, lifestyle and freedom are limited by other people, and this extends to their options to participate in research. Sometimes this is because people are trying to be kind. They see research as something not relevant, or even disruptive, to a person with a learning disability. So they deny them their right to choose if they want to take part in research. 

When someone decides what is right for you without even asking you it takes away your freedom and autonomy. Freedom and autonomy aren’t about being supported to do a limited number of things you choose between. They are having all options and choices and then be supported to do them.

It is important that people who support people with learning disabilities and people who support research understand that people with learning disabilities have a right to be part of research that affects them and their lives. They should not be protected from the perceived inconvenience or assumed to lack capacity to take part in research – they should be supported to have the same choices that others have.

We want more people to be empowered to make a decision about taking part in research relevant to their health and care, and be given the choice to take part in a way that suits them. We wanted to show the many ways people with learning disabilities can be part of research; from participation to expert advisors and research leaders.

The journey to true co-production

Blobs and Squares

Early on in the project we all watched the Parable of the Blobs and Squares. In the video, squares are the academics and institutions. Blobs are the public partners. Squares want to understand the blobs, but they keep giving money to other squares because they look like them and write reports like them. Some blobs start to learn the academic systems and processes so they can be part of research, but in doing so they start to look...square.

We believe that true co-production starts with ethical involvement, and by that we mean equitable involvement, so we asked ourselves, ‘How can public partners become leaders in research without compromising their unique perspective?’

We had lots of previous experience in the team, and we’d all read lots of guides that listed the principles of co-production or the values to embrace - but we couldn't find any details on what this meant for us. Was it more inclusive to meet online or in person? Should you have an agenda or just let things emerge? What should an agenda look like - should it be paper, digital, easy read, plain English? Who decides what goes on the agenda? How do you ensure everyone feels able to have their voices heard in a meeting? How do we make equitable decisions together? Should you even have meetings!!? None of the guides were helpful in answering these questions.

We decided to work together and learn and adapt as we went, with a focus on removing barriers to make things as equal and inclusive as we could. We quickly realised that we needed to ‘unlearn’ some of the things we thought we knew…

Context and culture

We assumed we knew each other’s contexts, but we didn’t.

Every partner brings with them their own set of experiences, perspectives and unique knowledge. To help share this, we ran a “showcase” where each person talked about how their work or experience was relevant to our project. We all took turns. This helped us learn about where each person was coming from and value the work they had already done in this area.

We also realised how important it was to learn about each other’s organisational culture. This project could be considered as a ‘clash of cultures’, with smaller, non-hierarchical organisations meeting large, complex and hierarchical institutions. Although people are just people, some people take on their organisation’s rules as the norm, failing to see they are organisation specific and not widely understood by others. We had to be transparent about the culture behind our behaviours and assumptions, and not assume our partners understood our context.

Language and communication

Words are a way to include or exclude people. We use them without thinking sometimes, yet they can cut people out if they don’t understand. Jargon, technical language and inaccessible documents send a message to say, “We only care that the academics can understand this message”.

We tried to find a shared understanding of what research words and phrases meant, as we often use them differently in our different communities.

We also adapted the way we worked, such as checking in regularly with meeting participants, asking if everyone understood what had been said.

We supported understanding through pre-meetings with colleagues with a learning disability and post meeting de-briefs.

The meandering nature of these conversations certainly changed the pace of meetings, and helped contribute to an inclusive meeting culture. But sometimes this pace clashed with the demands of the project and that was hard to reconcile. We had to be prepared to go at the right pace for everyone though, as the right pace signals respect for every member of the team.

Accessible formats

We co-designed accessible formats at every stage of the project; agendas, minutes and presentations for example. We thought about how communication happens and on what platforms, creating visual resources where possible. For example, when we wanted to discuss a systematic review, we created an easy-read version of it so we could ALL discuss it. ³

Significant time, effort and expertise goes into creating quality accessible materials. An easy-read presentation could take 6 hours to produce and be shown on screen for less than 10 minutes. As creating quality accessible materials is so labour intensive, it is sometimes difficult to ‘justify’. Throughout the project, we challenged this perception, with team members taking time to produce what was needed. Yet, at times, we found ourselves having to ration accessible design time because of costs.

Pace, trust, understanding and respect

Our team members were from across the UK so we met mostly online. Meeting online was better for the environment and quicker, but took longer to build relationships, trust and a shared understanding. To help we spent the start of the meeting rating our moods on funny visual scales and talking a bit about our lives. These “icebreakers” may seem silly, but they are the moments many of us valued most.

If you don’t do relationship building you don’t build trust, which means you don’t get meaningful co-production. If you don’t have a rapport with community partners, the dynamic remains skewed and can feel like “us and them.”

Gary says "Trust doesn't just happen straight away, it has to be earned but once it's achieved you have so much more confidence in working with those people and you really feel like you're part of a team. It's a bit like a football team, players need to trust each other and trust their manager if they want to score those goals."

As we highlighted at the start of this essay, people with learning disabilities are often seen as vulnerable or not able to participate as equals. People then take power away from them, or exercise tokenistic involvement to tick a box, undermining their autonomy.

Our project was mindful we needed to be clear in our actions (not just our words) that we were doing things differently. We worked hard to ensure we were working together as co-leads and/or co-investigators with shared decision-making power.

This meant we had to be prepared to go at the right pace for everyone. The pace of academic research is one of deadlines and outputs and it is not the pace of community engagement. The right pace signals respect for every member of the team.

"Community is built at the speed of trust" John McKnight

Time and money

Funders often rely on all partners understanding and ability to predict how much time they will contribute throughout a project before it has even begun. We’d like to say our time was properly estimated on this project, but we had no idea when we started what getting it right would look like (or what that would cost).

 Before every meeting, it took around 3 weeks to ensure a collaborative agenda was agreed, documents were made accessible and everything was communicated in advance. This made our meetings inclusive and put everyone in a place where they were ready to contribute, but it was energy and time intensive.

Image created by Max Clark, Thinklusive: A screenshot of a process of 4 meetings where the project team work together to ensure the self-advocates feel prepared for each team meeting.

We spent about four times more of our time than was paid for.

This was stressful for Amy as her time was also allocated to other research projects. For Gary, all this extra time meant he couldn’t deliver other paid work, so there was a financial cost to his organisation as well as him personally. We all invested a lot of unpaid time in this project. This placed extra emotional and mental strain on all involved. None of us can deliver our best work when our wellbeing is compromised.

We found further challenges in the way that funding worked. At the application stage of our project with deadlines looming, the academics had to work quickly to get budgets organised. Our public partners couldn't make the funding portal work for them and immediately felt excluded by the research system. Further down the line, slow and heavily bureaucratic payment processes and the complexities of navigating the benefits system resulted in community partners not being paid on time, placing them at further financial risk, simply for being part of the research.

Recognising failure as part of good collaboration

“You’re being too tough on yourself!” 

This got said to Amy and Gary at most meetings. But we set high standards and talked about when we failed to meet them for a reason. 

Recognising and articulating failure as part of collaboration helped us be honest and learn, maintaining the trust we had built. Sometimes other demands on us meant we didn’t meet the standards we set. Sometimes we tried something new, and it didn’t work. But we talked about it and admitted it and our team decided what we needed to do next.

Reflecting on, and adapting our practices based on individual need, is really important for inclusivity, and why we can’t simply write a list of how to get it right – because each team is different.

Reflections and recommendations

Funding

Our experience has shown that current funding structures do not adequately account for the extra time and resources needed to ensure inclusivity across the research cycle. Funders can query staffing costs which are used to build relationships; telling us they don’t view relationship building as important to research.

Reasonable adjustments are a legal requirement under the Equality Act. They are essential to enable ethical inclusion and produce meaningful results, yet to cover these adjustments, spending elsewhere in a project is often reduced. Research that does not involve making reasonable adjustments does not have to contend with this problem - this is the opposite of inclusive.

Finally, because of the time needed to establish ways of working, many partnerships (our included) feel that they’re only just getting started as the money runs out. Without ongoing financial support, it’s simply not possible to sustain the valuable relationships created. Academic partners are forced to move on to new projects (albeit sometimes supported financially by our research institutions) whilst our public partners feel left behind, once more excluded from both research and the funding that comes with it. This undermines the trust we built.

A more sustainable funding approach is needed where universities and/or funders retain and continually fund research active community partners rather than asking teams to bid continually for unpredictable, piecemeal funding. This would counter the inequality manifest in asking non-academic institutions to discuss and formulate ideas, write grants and write up and share findings from projects without funding allocated to these tasks.

For truly equitable and coproduced research funders need to:

• Challenge limited inclusion costs, time and pace of delivery as being insufficient to deliver truly equitable and coproduced research.
• Ring-fence additional funding for reasonable adjustments outside funding limits, including increased time on projects to build relationships.  The cost of reasonable adjustments should not be detrimental to the overall project budget.
• Ask at review about provision for accessible information. Inaccessible research excludes everyone, not just people with learning disabilities.
• Set up a “research ready” sustainable funding stream to help partners build the foundations needed to ensure equitable, inclusive and productive relationships. They will not become square if you do this right, you will empower them to see the value of being blobby! 
• Work with the government to ensure payment for research participation or advisory roles doesn’t affect benefits.

Research Culture

True co-production is not a neat and predictable process, nor does it unfold at the pace of a traditional research project. Instead, it involves public and academic partners working together at every stage of the research cycle: design, delivery and dissemination.

Researchers and their institutions need to:

• End the unwritten expectation of unpaid planning, preparation and write-up time that exists within academic research. Academics cannot achieve these things in isolation – this is damaging to public partners and research outputs.
• End the unpaid emotional labour of researchers and public partners who want to build authentic relationships but are on projects that have not allocated enough resources.
• Pay public partners promptly without the assumption they have an infrastructure that can process complex financial requests for paperwork. 

Conclusion

Inequalities in health are created by the system and the people within that system, they are not naturally occurring. Inaction perpetuates these inequalities. If we don’t try to change things, we are accepting these inequalities and the fact that they cost people their lives.

Our team sees a future where all research is truly inclusive, where:

• People with learning disabilities (and those that support them) know that they have a right to be involved in this research and feel respected, properly funded, and fully involved in research processes.
• Research teams confidently know how to involve people with learning disabilities as research participants, advisors and leaders.
• Funders properly acknowledge the time and cost of achieving true co-production.

By sharing the learning from our project, our hope is that we can take a collective step towards achieving this vision.

A PDF VERSION OF THIS ESSAY IS AVAILABLE HERE

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This work is licensed under CC BY-NC-ND 4.0  

Disclaimer: The views expressed in this report are not representative of the views of the British Science Association or UK Research and Innovation.

Footnotes

1. The full team are Amy and Gary plus Katharine Richardson, Rachel Royston, Susan Buell, Vaso Totsika, Victoria Shepherd, Frazer Stansfield, Jodie Bradley, Geoff Doncaster, Maximilian Clark, Paul Charlton, Jyothika Kumar, Victoria Farnsworth, Angela Henderson, Anna Marriott, Samantha Clark & Deborah Cairns Learning Disability England website: No Research About Us, Without Us
2. Our members prefer person first language. You can say “learning disabled person” - we use what our team members tell us to use.
3. Our easy-read summary of a review on inclusive research