While there is a growing scholarly interest in lived experience research and different kinds of participatory methodologies in research and policymaking, there is a lack of clarity about core underpinning concepts and reasons for engaging in co-design work.

This report considers how people with lived experience, including those from diverse backgrounds and communities, who have often been excluded from power, can be co-collaborators in research, holding equal share of power. In particular, the report explores how researchers can establish genuine partnerships and articulates a set of core principles. The authors also draw insights from communities and people with lived experience about how they can be valued and listened to in research intended to improve policy and practice.

The authors make the case that lived experience research and co-design methods are distinct concepts. Lived experience research can take many different forms, including methods that are not co-design. On the other hand, genuine co-design methods necessitate the involvement of people with relevant lived experience and other affected communities as deeply as possible throughout the research process.