"Emma Pauley’s insights from being involved in co-produced research

 

Co-production and involvement are recently becoming recognised as part of best practice in research for children and adults with disabilities. Researchers and, more importantly, funders are recognising that including people with disabilities in the design of research makes the research better because it makes it a) more in line with the community’s needs, b) more practical and feasible. These two things mean, in the long run, co-produced research saves money. This is not the only reason people do co-production. For me, and for my colleagues, we do it because it is ethical and democratic. 

 

I organised a workshop tagged on to the Neurodevelopmental Disorders Annual Seminar 2022 called the “Overcoming barriers to co-production with children and adults with Neurodevelopmental disabilities workshop”. Many researchers feel unprepared to co-produce research with people with neurodevelopmental disabilities, while still believing in its value. This workshop aimed to address this gap, by giving researchers an overview of the main challenges of co-production and how to overcome them.

 

When I was thinking about who to invite to speak at this workshop, I knew it was important that we heard about the challenges to co-production from different perspectives. I invited Emma because, as a parent to Millie, she has extensive experience with co-production for both research and services. In her presentation, she explained to researchers in attendance the barriers and facilitators to wanting to take part in research. She explained that understanding the parent’s life is essential for building trust and good working relationships. For example, researchers should have the decency to understand the time constraints parents are under and offer convenient locations, lunch, childcare, timelines, and information in advance. Payment is about respect and should be the standard for people offering expertise by experience. Setting expectations is important so that people know how much decision-making power they have. Finally, members of the co-production team should be updated regularly about the progress of the research and impact of the work. 

 

Emma also made it clear that she and other members of the community are aware when their involvement is part of a tick box exercise for funding grants. She pointed out how bad this has made her feel in the past. Not being listened to or being valued is often worse than not being invited to be involved in research at all. 

 

Emma’s presentation was thought-provoking. It was obvious her comprehensive yet moving talk hit a nerve with the attendees of the event. I am confident in saying, she has likely changed the practice of at least one researcher in that room. I certainly learnt a lot from her. "

​

More information can be found on

https://epic-information.com/

​

​