Abstract
Patient or public involvement (PPI) in health research is increasingly promoted as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research (generating knowledge), and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ‘ordinary’ people who are regarded as ‘representative’ of an assumed patient perspective. In this paper we focus on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research.
Original language | English |
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Pages (from-to) | 386-403 |
Number of pages | 18 |
Journal | Health Care Analysis |
Volume | 25 |
Issue number | 4 |
Early online date | 8 Jun 2016 |
DOIs | |
Publication status | Published - Dec 2017 |
Bibliographical note
AcknowledgmentsThe research for this paper was primarily funded by an Australian Research Council (ARC) grant (DP120101092), How do we know what works? Ethics and evidence in surgical research. Katrina Hutchison’s research was also partly funded by the ARC Centre of Excellence for Electromaterials Science, where she has worked since June 2015. Discussions about the paper were facilitated by Macquarie University funding of a visit by Vikki A. Entwistle to participate in a Centre for Agency, Values and Ethics (CAVE) seminar on Capabilities Approaches to Justice. The authors would like to thank the anonymous reviewers for a number of helpful comments.
Keywords
- Patient and public involvement
- Research methodology
- Epistemology
- Knowledge
- Patient knowledge
- Experiential knowledge
- Miranda Fricker
- Testimonial injustice
- Credibility