Experience, knowledge and evidence: a comparison of research relations in health and anthropology
Abstract
Patient and public involvement in health research has been promoted by the United Kingdom's Department of Health and its research funding agencies for at least a decade. The policy rhetoric through which it is promoted is based on the idea that patients’ experiential knowledge can be harnessed to improve the quality and relevance of health research. This paper uses the comparative case of post-colonial critiques of anthropology to propose ways of thinking about the implicit and explicit claims underpinning assumptions about experiential knowledge. It focuses on three areas of debate: insider knowledge, and authenticity; objectivity/subjectivity; and ethical and political engagement.
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Different value sets are seen to lead to diverse constructions of PPI and can affect whether or not and how PPI is evaluated.
“However, whichever labels are used to define value sets, it is clear that different value sets are seen to lead to diverse constructions of PPI, 28,174 and can affect whether or not and how PPI is evaluated.52”
From ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study (2015) · cites this paper as [52]
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ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study
Wilson, P., Mathie, E., Keenan, J., McNeilly, E., Goodman, C., Howe, A., Poland, F., Staniszewska, S., Kendall, S., Munday, D., et al. (2015) · Health Services and Delivery Research · doi:10.3310/hsdr03380 · Cited by 297 · see citing works
“Criticisms of PPI include tokenism and power asymmetries between researcher and lay representative.(27,52,173) However, Ben-Ari and Enosh(194) suggest that focusing on such exchanges is too simplistic and that, within health research, reciprocity between researcher and the lay representative occurs less through the ex…”
Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?
Banner, D., Bains, M., Carroll, S. L., Kandola, D. K., Rolfe, D. E., Wong, C., & Graham, I. D. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0139-1 · Cited by 214 · see citing works
“As a concept and practice, McKevitt (2013) argues that patient and public engagement in research has rapidly become “rhetorically and structurally embedded in the field of publicly funded medical research” (p115) [37].”
BackgroundBoaz, A., Biri, D., & McKevitt, C. (2014) · Health Expectations · doi:10.1111/hex.12295 · Cited by 97 · see citing works
Self-citationWilson, P. M., Mathie, E., Poland, F. M., Keenan, J., Howe, A. C., Munday, D., Kendall, S. A., Cowe, M., Staniszewska, S. H., & Goodman, C. M. (2018) · Journal of Health Services Research & Policy · doi:10.1177/1355819617750688 · Cited by 51 · see citing works
What does engagement mean to participants in longitudinal cohort studies? A qualitative study
Ochieng, C., Minion, J. T., Turner, A. J., Blell, M. T., & Murtagh, M. J. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00648-w · Cited by 31 · see citing works
Montenegro, C. (2018) · Journal of Social and Political Psychology · doi:10.5964/jspp.v6i2.924 · Cited by 17 · see citing works
Hoekstra, F., Schaefer, L., Athanasopoulos, P., & Gainforth, H. L. (2021) · International Journal of Health Policy and Management · doi:10.34172/ijhpm.2021.35 · Cited by 17 · see citing works
Peckham, S., Wilson, P. M., Williams, L. A., Smiddy, J., Kendall, S. A., Brooks, F. M., Reay, J., Smallwood, D., & Bloomfield, L. (2014) · Health Services and Delivery Research · doi:10.3310/hsdr02440 · Cited by 14 · see citing works
Opening up evidence-based policy: exploring citizen and service user expertise
Stewart, E. A., Smith‐Merry, J., Geddes, M., et al. (2020) · Evidence & Policy · doi:10.1332/174426420x15838217456181 · Cited by 15 · see citing works
Moving Evidence: Patients’ Groups, Biomedical Research, and Affects
Lindén, L. (2020) · Science Technology & Human Values · doi:10.1177/0162243920948126 · Cited by 13 · see citing works
““Knowledge statements” can be based on biomedical knowledge as well as lay and personal experience.2 As McKevitt (2013) shows, in the context of patient engagement, “experiential evidence”—that is, evidence based on personal, lay, experience—is frequently called upon by both advocates and…”
BackgroundPapoulias, C., & Brady, L. (2024) · Health Research Policy and Systems · doi:10.1186/s12961-024-01197-5 · Cited by 15 · see citing works
Mosse, D. (2018) · Sociological Research Online · doi:10.1177/1360780418797718 · Cited by 11 · see citing works
“A parallel separation marks out PPI approaches that inform, consult, empower through shared leadership; or research that graduates from user consultation or collaboration to research that is usercontrolled (McKevitt, 2013).”
BackgroundInfluentialMacNeil, M., Abelson, J., Moore, C., Lindsay, S., Adams, J., Alshaikhahmed, A., Jain, K. K., Petrie, P., & Ganann, R. (2023) · Research Involvement and Engagement · doi:10.1186/s40900-023-00523-5 · Cited by 11 · see citing works
A multi-method evaluation of how equity deserving communities were engaged in research
Porchak, E., Graham, I. D., Presseau, J., et al. (2025) · BMC Public Health · doi:10.1186/s12889-025-23149-6 · Cited by 4 · see citing works
“There is an ethical imperative to engage the public and communities in research which is highlighted by the global movement “nothing about us without us” that originated in disability studies and has spread to health services research [6, 7].”
Pearce, C., & Komaromy, C. (2021) · Springer eBooks · doi:10.1007/978-3-030-70894-8_1 · Cited by 2 · see citing works
Exploring the meaning and impact of public involvement in health research
Barber, R. (2014) · White Rose eTheses Online (University of Leeds, The University of Sheffield, University of York) · Cited by 1 · see citing works
Middleton, L. (2017) · doi:10.26686/wgtn.17060417.v1
“Calls to work in this way have been attributed to: (1) the concern to democratise publicly funded medical research and (2) the increasing importance attached to the notion of patient experience starting with the body of theory emanating from disability studies (McKevitt, 2013).”
BackgroundMacNeil, M., Abelson, J., Moore, C., Lindsay, S., Adams, J., Alshaikhahmed, A., Jain, K., Petrie, P., & Ganann, R. (2024) · Figshare · doi:10.6084/m9.figshare.26651193
- Authors
- McKevitt, C.
- Affiliations
- King's College London (GB)
- Corresponding author
- McKevitt, Christopher
- Venue
- Evidence and Policy
- Publisher
- Bristol University Press
- Published
- 2013-01
- Volume
- 9
- Issue
- 1
- Pages
- 113-130
- ISSN
- 1744-2648 (ISSN-L)
- 1744-2656
- OpenAlex
- W2326340737
- Cited by
- 19
- References
- 0
- Citations by year
- 2025: 1 · 2024: 2 · 2023: 1 · 2021: 3 · 2020: 2 · 2019: 1 · 2018: 3 · 2017: 2 · 2015: 1 · 2014: 3
- FWCI
- 2.41
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Evidence & Policy (publishedVersion)
- Research Portal (King's College London) (submittedVersion)
- Funders
- Economic and Social Research Council (RES-451-26-0487)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Sociology and Political Science › Qualitative Research Methods and Ethics
- Social Sciences › Anthropology › Anthropology: Ethics, History, Culture
- Keywords
- patient and public involvement, experiential knowledge, insider information, authenticity, subjectivity and objectivity, research ethics, political participation, health research funding
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