Nothing About Us Without Us: Co-Producing inclusive data collections infrastructure with learning-disabled people

Research involving learning-disabled individuals who do not communicate in traditional ways has tended to be carried out using quantitative measures and through parent or carer reporting. Our project is designed to help the UK research and innovation community to develop data collections infrastructure that is genuinely inclusive of learning-disabled people, so that learning-disabled individuals have the option to take part in research. We will be working with learning-disabled young people (aged 16-25 years) and those who support them to develop: An open-access library of evidence-informed data collection tools and strategies. A set of principles for including learning-disabled people in research. A set of research priorities identified by learning-disabled young adults and those who work with them. We are doing this by carrying out an ethnographic study of the communication choices made by learning-disabled young people in a special school and a residential college, where we will spend time getting to know young people and the people who work with them. We will then run co-production workshops to assess the acceptability and viability of the data collection tools and inclusion principles to establish an open-access library, which will house our guidance for inclusion and evidence-informed data collection tools.