Can PPI be used to improve epistemic justice in health research for marginalised groups?

Abstract

The principle of epistemic justice (EJ) recognises the need for a person's voice to be both heard (testimonial) and understood (hermeneutic) in the generation of meaning. Funding bodies now require all research to have embedded patient and public involvement (PPI) - an active partnership between patients, carers, and the public with researchers, which influences and shapes research. Current PPI initiatives potentially enable testimonial justice - ensuring voices are heard. But do they adequately support hermeneutical justice? First, a scoping review of published PPI guidance was carried out to describe a current best-practice framework. The framework was then critically reviewed using key concepts described by an EJ understanding of optimising healthcare research for marginalised groups, to consider the potential role of current PPI guidance in supporting epistemically just health research. Analysis is ongoing, but the study's findings describe whether and how current PPI guidelines support and enable the voice of marginalised patient groups to not only be included in research but also to have meaningful impact, including what factors enable and disable tailored care. This study suggests ways in which current PPI methods can be used to best advantage. The authors' ongoing research is discussed to understand further how EJ concepts might help shape the future of PPI in health research.