From subjects to partners in research: dementia and patient and public involvement

I have recently become the co-chair of a patient and public involvement and engagement workstream of a large dementia care research study aimed at empowering people affected by dementia to access psychosocial interventions. In preparing for this role, I wanted to explore and reflect upon when and how the public involvement and engagement movement evolved more generally and then consider in the context of dementia. This is not intended to be a potted history of public involvement and engagement but rather to detail a process of thinking that brought me to this current role.

In 1991, the NHS research and development strategy was the first government document to discuss the relevance of public involvement, both in health service evaluation and development (Peckham, 1991). Peckham's paper (scanned from a hard copy of the journal, which is telling of its age and the advances in digitalisation of publications alone), speaks of ‘medical archaeology’ where new developments in healthcare were superimposed or built on top of existing practice, and earlier practices were still discernible among the newer acquisitions.