Authentic Public and Patient Involvement with Deaf sign language users: it is not just about language access.

This article concerns Public and Patient Involvement (PPI) practice with Deaf people who are sign language users. It draws on the experience of PPI in a project concerning Deaf people’s lived experience of dementia and focusses on: (i) creating the conditions of in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without PPI; and (iii) community consultation as influencing positive PPI practice. It sets out a series of recommendations for authentic PPI practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people’s involvement in PPI in health and social care research.