Patient and public involvement in dementia and neuroprogressive conditions: commentary from NHS Scotland based ‘partners in research’

Abstract

Abstract “Nothing about us without us” has become a fundamental part of dementia activism, with people affected by the condition keen to make sure that research aligns with their needs and expectations as reported (Bryden in Nothing about us, without us! 20 years of dementia advocacy, Jessica Kingsley Publishers, UK, 2015). Over the past three years, the 'patient and public involvement group' for NRS Neuroprogressive and Dementia Network has been transformed into ‘Partners in Research’, a name and group identity chosen by people with lived experience to represent the equal partnership they hoped to embark on as part of their involvement in the network. The co-authors include people living with dementia or supporting someone with dementia, and over the course of the paper we share how our work has evolved; the types of activities we have been part of; reflections on the barriers to 'patient and public involvement'; and consideration of where we go next with involving people with lived experience in research. Our paper presents several activities in which Partners in Research contributed to new knowledge and understanding of dementia. Firstly, we share the challenges faced in seeking to develop a ‘Scottish Strategy to Coproduction’, in particular, how difficult it was to bring people from different organisations and spaces together. Secondly, we share the experiences of co-authoring a book on dementia, an innovative and impactful piece of work where co-authors were able to have a voice and share their expertise. Thirdly, we look at Partners in Research involvement in research input requests received by academics across the UK looking for ‘patient and public involvement’ in the design, development and dissemination of their research. Finally, we explore the visibility of ‘patient and public involvement’, the barriers to sustainability and the future directions for Partners in Research. In particular, the need for dedicated funding for PPI activities, increased ethical oversight in PPI activities, and appropriate space and time to continue building on the ideas of people with lived experience.

Keywords

• Lived experience
• PPI
• Coproduction
• Involvement
• Accessible research
• Dementia