Introduction: Patient and public involvement in research is anchored in moral and epistemological
rationales. Moral rationales relate to the public having a right to influence how knowledge about
them is generated. Epistemological rationales relate to how research design and implementation can
improve when informed by experiential, ...
Introduction: Patient and public involvement in research is anchored in moral and epistemological
rationales. Moral rationales relate to the public having a right to influence how knowledge about
them is generated. Epistemological rationales relate to how research design and implementation can
improve when informed by experiential, as well as technical, knowledge. In other words, public
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involvement can increase the epistemological resources of researchers, and contribute to research
that is fit for purpose and has high external validity.
Methods: This article presents an analysis of 3 meetings and 11 interviews with public collaborators
and researchers in three UK-based health research studies. Data comprised transcripts of audiorecorded research meetings and interviews with public collaborators and researchers. Data was first
analysed to develop a data-informed definition of experiential knowledge, then thematically to
investigate how this experiential knowledge was considered and received within the research space.
Results: At meetings public collaborators shared their experiential knowledge as stories, comments,
questions, answers, and when referring to their own role. They were aware of crossing a boundary
from everyday life, and some adapted their contributions to fit within the research space. Although
researchers and public collaborators made efforts to create an inclusive climate, obstacles to impact
were identified.
Conclusions: Considering experiential knowledge as a boundary object highlights that this knowledge
has a different form to other kinds of knowledge that contribute to research. To enable impact from
experiential knowledge, researchers need to create a space where public collaborators experience
epistemic justice.