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Are you an ‘Expert by Experience’?   

Indigo Ayling from Research Institute of Disabled Consumers

How are disabled people involved in the design and implementation of ncat’s research? 

ncat is working to ensure that all transport has accessibility for disabled people at the heart of its development and delivery.   

We work with ‘Experts by Experience’ groups to help shape the design and implementation of our research.   

Here, Indigo Ayling, a Senior Researcher with ncat consortium partner, RiDC (the Research Institute for Disabled Consumers), explains how the groups work, and why they are fundamental to ncat’s work.   

Who are the Experts by Experience?   

At ncat, Experts by Experience are disabled people who feed into our research projects at different stages: from being consulted on initial design of the research, to advising on how surveys and focus groups should be shaped. Each group includes disabled people who live with a wide range and type of impairments, people of different ethnicities, genders, and those who live in different locations across the country.  

Many participants also bring their professional knowledge and experience from different areas to the group.  

Why do we work with Experts by Experience in our research?   

We work with Experts by Experience because we want disabled people’s perspectives on how we should do the research, what questions to ask, and how to ask them. 

We want to make sure we are asking the right questions in our surveys and focus groups. Are we focusing on the most important aspects? Do our questions reflect the complexity of the disabled experience accurately, or do they just give a vague overview, and not quite get to the point of how an issue might impact someone? These nuances are best identified by the people affected: disabled people.    

We also want our research to be accessible for as many people as possible. So, we need to make sure that the software we use, the different methods to take part in research, even the language and words themselves are inclusive. The only way to do this is by ensuring that there is a diverse group of people in the room when designing the work.   

In summary, our research is better and more representative when it is led by disabled people who have direct experience of the issues we are trying to solve.   

How have Experts by Experience been used in ncat’s research so far?   

So far there have been two projects with Experts by Experience involved. The first was a survey looking at the barriers to transport that disabled people face. Here, our group of Experts by Experience, selected from the Community of Accessible Transport (CAT) panel, helped us to look critically at the design of the survey and ‘check and challenge’ what we had suggested. This led to some changes in the design and focus of the survey. 

The second project looked at how ncat will be monitored and evaluated internally. Here, a different experts group worked with consortium partner, WSP, to look at how we would measure the success of ncat over its first seven years. Making sure that we are measuring the right things will hopefully ensure real change for disabled people.   

Will we continue to include Experts by Experience in ncat’s future research?    

Of course! The groups bring a wealth of experience to our research, and by speaking to disabled people right at the beginning of a project, we can save a lot of work later down the line. If we want to create equality for disabled people, we need disabled people in the room, making decisions and being valued equally to non-disabled experts. From those who participate in the research through the CAT panel, to those who help in the design of the research itself, via the Experts by Experience sessions, ncat’s work is done with disabled people, not for them or to them.   

How can disabled people get involved?  

Disabled people are invited to share their experiences by taking part in research as a member of ncat’s Community of Accessible Transport (CAT). Here, you can share your views on what transport is like as a disabled and older person. Tell us what improvements or changes would make things better. Your experiences will directly inform our recommendations. Every now and then we will also send out invitations to take part in Expert by Experience groups, where panel members can work with us on the design of different projects.   

Once registered on the panel you are under no obligation to take part as you can choose which research you want to be involved in.