Co-producing ethics guidelines together with people with learning disabilities

BackgroundWe are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the Humanising Healthcare (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration.MethodsWe reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co-production meetings with our full research team, including advocacy-based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines.FindingsWe present ten guidelines for co-producing research with people with learning disabilities.ConclusionsOur findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments). An Easy Read version of this accessible summary can be found in Appendix A. It is important to do disability research together with researchers with learning disabilities. Co-production is where researchers with and without learning disabilities work as partners. Co-produced learning disability research should be led by people with learning disabilities. An important part of doing research is thinking together about research ethics. Research ethics is about doing fair research that does not harm people with learning disabilities. We are a research team of people with and without learning disabilities. We worked together to develop 10 ideas for co-producing research. We called these 10 ideas 'Participatory Ethics Good Practice Guidelines'. This paper includes an Easy Read version of these 10 ideas (Appendix B). Researchers with learning disabilities on our study team are not just experts in being a person with a learning disability but also experienced researchers; a point all researchers should keep in mind.