Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research

Katrina Hutchison, Wendy Rogers, Vikki Entwistle

Research output: Contribution to journalArticle

6 Citations (Scopus)
7 Downloads (Pure)

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 languageEnglish
Pages (from-to)386-403
Number of pages18
JournalHealth Care Analysis
Volume25
Issue number4
Early online date8 Jun 2016
DOIs
Publication statusPublished - Dec 2017

Fingerprint

deficit
Research
Health
health
experiential knowledge
Patient Advocacy
epistemology
credibility
transparency
inclusion
interpretation

Keywords

  • Patient and public involvement
  • Research methodology
  • Epistemology
  • Knowledge
  • Patient knowledge
  • Experiential knowledge
  • Miranda Fricker
  • Testimonial injustice
  • Credibility

ASJC Scopus subject areas

  • Medicine(all)
  • Nursing(all)
  • Social Sciences(all)

Cite this

Addressing Deficits and Injustices : The Potential Epistemic Contributions of Patients to Research. / Hutchison, Katrina; Rogers, Wendy; Entwistle, Vikki.

In: Health Care Analysis, Vol. 25, No. 4, 12.2017, p. 386-403.

Research output: Contribution to journalArticle

Hutchison, Katrina ; Rogers, Wendy ; Entwistle, Vikki. / Addressing Deficits and Injustices : The Potential Epistemic Contributions of Patients to Research. In: Health Care Analysis. 2017 ; Vol. 25, No. 4. pp. 386-403.
@article{e7380b12ef1843f9bc037c3bf6b9850e,
title = "Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research",
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.",
keywords = "Patient and public involvement, Research methodology, Epistemology, Knowledge, Patient knowledge, Experiential knowledge, Miranda Fricker, Testimonial injustice , Credibility",
author = "Katrina Hutchison and Wendy Rogers and Vikki Entwistle",
note = "Acknowledgments The 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.",
year = "2017",
month = "12",
doi = "10.1007/s10728-016-0323-5",
language = "English",
volume = "25",
pages = "386--403",
journal = "Health Care Analysis",
issn = "1065-3058",
publisher = "Springer Netherlands",
number = "4",

}

TY - JOUR

T1 - Addressing Deficits and Injustices

T2 - The Potential Epistemic Contributions of Patients to Research

AU - Hutchison, Katrina

AU - Rogers, Wendy

AU - Entwistle, Vikki

N1 - Acknowledgments The 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.

PY - 2017/12

Y1 - 2017/12

N2 - 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.

AB - 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.

KW - Patient and public involvement

KW - Research methodology

KW - Epistemology

KW - Knowledge

KW - Patient knowledge

KW - Experiential knowledge

KW - Miranda Fricker

KW - Testimonial injustice

KW - Credibility

U2 - 10.1007/s10728-016-0323-5

DO - 10.1007/s10728-016-0323-5

M3 - Article

VL - 25

SP - 386

EP - 403

JO - Health Care Analysis

JF - Health Care Analysis

SN - 1065-3058

IS - 4

ER -