Co-producing ethics guidelines together with people with learning disabilities

Abstract

Background

We 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.

Methods

We 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.

Findings

We present ten guidelines for co-producing research with people with learning disabilities.

Conclusions

Our 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).