Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.