Introduction: Patient organization movements and new metamorphoses in patienthood

Landzelius, Kyra

doi:10.1016/j.socscimed.2005.06.023

Cited by 108Health, Medicine and SocietyMental Health and Patient InvolvementHealthcare, Law, Governance, and Management Studies

Introduction: Patient organization movements and new metamorphoses in patienthood

Landzelius, Kyra·2006·Social Science & Medicine

DOI 10.1016/j.socscimed.2005.06.023

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Abstract

In this introduction, we examine health activism as one expression of an emergent 'politics of vitality' or flurry of activity around health matters that includes: advances in technoscientific medicine, healthcare restructurings, and a re-thinking of science-society contracts. In querying politicized mobilizations around 'health matters and the mattering of health,' we provocatively entitle our discussion 'patient organization movements'. This marks an invitation to interrogate (in reverse order) each term along the way, pausing in our concluding discussion to turn our attentions to the patient. The figure of the patient is thematized as an historical inscription and a formidable dimension of personhood under modernity/late modernity. Moreover, we argue that conventional categorizations of the patient are undergoing accelerated processes of change at the present time. We characterize three transformational trends: moves to author and authorize patienthood, mutiny from patienthood, and mutations in the category of the patient. Such metamorphoses in patienthood represent both reflections and repercussions--at once consequences and catalysts--of the proposed politics of vitality. We explore the pluralization of the patient's persona via a closer look at the 11 empirical studies of health activism that comprise this collection.

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Activism is a collective action that can challenge the status quo and pressure leaders, corporations, communities, groups, and individuals to make changes.
“Activism has been portrayed as a collective action (Landzelius, 2006), which can be orientated towards challenging the status-quo, and putting pressures on world leaders, corporations, communities, groups and individuals to make much needed changes.”
From Climate change and COP26: Are digital technologies and information management part of the problem or the solution? An editorial reflection and call to action (2022) · cites this paper as Landzelius, 2006

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(1997) · Nature Medicine · doi:10.1038/nm0297-242 · Cited by 1,666 · see citing works
The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials
Epstein, S. (1995) · Science Technology & Human Values · doi:10.1177/016224399502000402 · Cited by 1,203 · see citing works
Impure science: AIDS, activism, and the politics of knowledge
(1997) · Choice Reviews Online · doi:10.5860/choice.34-3895 · Cited by 1,130 · see citing works
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Dumit, J. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.06.018 · Cited by 662 · see citing works
Embodied health movements: new approaches to social movements in health
Brown, P., Zavestoski, S., McCormick, S., Mayer, B., Morello‐Frosch, R., & Gasior Altman, R. (2004) · Sociology of Health & Illness · doi:10.1111/j.1467-9566.2004.00378.x · Cited by 631 · see citing works
Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine
Clarke, A. E., Shim, J. K., Mamo, L., Fosket, J. R., & Fishman, J. R. (2003) · American Sociological Review · doi:10.1177/000312240306800201 · Cited by 560 · see citing works
Community participation in health: perpetual allure, persistent challenge
Morgan, L. M. (2001) · Health Policy and Planning · doi:10.1093/heapol/16.3.221 · Cited by 370 · see citing works
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Brown, P., & Zavestoski, S. M. (2004) · Sociology of Health & Illness · doi:10.1111/j.0141-9889.2004.00413.x · Cited by 322 · see citing works
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Types of Self-Surveillance: from abnormality to individuals ‘at risk’.
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Crossley, N. (1999) · British Journal of Sociology · doi:10.1111/j.1468-4446.1999.00647.x · Cited by 114 · see citing works
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McCormick, S., Brown, P., & Zavestoski, S. M. (2003) · Sociological Forum · doi:10.1023/b:sofo.0000003003.00251.2f · Cited by 95 · see citing works
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Parry, N., & Ehrenreich, J. H. (1980) · British Journal of Sociology · doi:10.2307/590092 · Cited by 47 · see citing works
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Ganchoff, C. (2004) · Sociology of Health & Illness · doi:10.1111/j.0141-9889.2004.00417.x · Cited by 40 · see citing works
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Schneirov, M., & Geczik, J. D. (2002) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/136345930200600204 · Cited by 22 · see citing works
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Landzelius, K. M. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.06.024 · Cited by 19 · see citing works
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Potts, L. K. (2004) · Critical Social Policy · doi:10.1177/0261018304046676 · Cited by 18 · see citing works
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McCally, M. (2002) · The Annals of the American Academy of Political and Social Science · doi:10.1177/000271620258400111 · Cited by 13 · see citing works
Come Lovely and Soothing Death: The Right to Die Movement in the United States
Gotham, K. F., Fox, E., Kamakahi, J. J., & Čapek, S. M. (2001) · Contemporary Sociology A Journal of Reviews · doi:10.2307/3089034 · Cited by 8 · see citing works
New Frontiers for Identity Politics? The Potential and Pitfalls of Patient and Civic Identity in the Dutch Patients’ Health Movement
Duyvendak, J. W., & Nederland, T. (2007) · Research in social movements, conflicts and change · doi:10.1016/s0163-786x(06)27009-5 · Cited by 6 · see citing works
Hyper-experts and the Vertical Integration of Expertise in EMF/RF Litigation
David, M. (2017) · Routledge eBooks · doi:10.4324/9781315255668-5 · Cited by 4 · see citing works
Come lovely and soothing death: the right to die movement in the United States
(2000) · Choice Reviews Online · doi:10.5860/choice.37-3380 · Cited by 3 · see citing works

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Buttigliero, D. S., & Tirado, F. (2012) · Papeles del CEIC · doi:10.1387/pceic.12461 · Cited by 5 · see citing works
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Dawes, L. L. (2011) · Social History of Medicine · doi:10.1093/shm/hkr151 · Cited by 4 · see citing works
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Vågan, A., Olsson, A. B. S., Arntzen, C., Rise, M. B., Grue, J., Haugland, T., Langeland, E., Stenberg, U., & Solvang, P. K. (2021) · Sociology of Health & Illness · doi:10.1111/1467-9566.13228 · Cited by 4 · see citing works
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Tirado, F., Gálvez, A., & Castillo‐Sepúlveda, J. (2013) · Política y Sociedad · doi:10.5209/rev_poso.2012.v49.n3.38545 · Cited by 4 · see citing works
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Dokumacı, A. (2014) · Performance Research · doi:10.1080/13528165.2014.947122 · Cited by 4 · see citing works
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Hauck, K., & Tsuchiya, A. (2011) · Value in Health · doi:10.1016/j.jval.2010.09.003 · Cited by 4 · see citing works
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Lepnurm, R., Dobson, R. T., Voigts, D., Lissel, M., & Stamler, L. L. (2012) · Journal of Hospital Administration · doi:10.5430/jha.v1n2p7 · Cited by 4 · see citing works
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Pearce, R. (2026) · Warwick Research Archive Portal (University of Warwick) · doi:10.82444/warw.33738865 · Cited by 4 · see citing works
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Kerr, A., Chekar, C. K., Ross, E., Swallow, J., & Cunningham‐Burley, S. (2021) · Manchester University Press eBooks · doi:10.7765/9781526141019 · Cited by 17 · see citing works
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Mair, L. (2026) · Culture Medicine and Psychiatry · doi:10.1007/s11013-026-09971-6 · Cited by 3 · see citing works
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Crath, R., & Rangel, J. C. (2020) · Journal of Evaluation in Clinical Practice · doi:10.1111/jep.13409 · Cited by 3 · see citing works
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Męcińska, L. (2018) · Studies in the Maternal · doi:10.16995/sim.258 · Cited by 3 · see citing works
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Endaltseva, A. (2020) · doi:10.70675/19f42d0fz928az4ff3zb72bzb937d7841811 · Cited by 3 · see citing works
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Heredia, C. R. (2018) · Question · doi:10.24215/16696581e082 · Cited by 2 · see citing works
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Męcińska, L. (2018) · Annales Universitatis Paedagogicae Cracoviensis Studia de Cultura · doi:10.24917/20837275.10.1.4 · Cited by 2 · see citing works
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Martini, J., Traoré, A. T., & Mahieu, C. (2021) · Global Public Health · doi:10.1080/17441692.2021.2005114 · Cited by 2 · see citing works
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Ostrach, B. M. M. (2013) · Anthropology · doi:10.4172/2332-0915.1000101 · Cited by 1 · see citing works
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Silva, P. A. (2018) · Sociologia Revista da Faculdade de Letras da Universidade do Porto · doi:10.21747/08723419/soc36a6 · Cited by 1 · see citing works
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Saille, D., & Marie, S. (2012) · OpenGrey (Institut de l'Information Scientifique et Technique) · Cited by 1 · see citing works
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Serapioni, M. (2022) · Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) · doi:10.25758/set.644
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Chaloner, C. (2013) · UEA Digital Repository (University of East Anglia)
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Renzhofer, H. (2010) · OhioLink ETD Center (Ohio Library and Information Network)
Movimiento y regímenes de vitalidad. La nueva organización de la vida en la biomedicina Movement an regimes of vitality. New organization of life in medicine
Gálvez, A., & Castillo‐Sepúlveda, J. (2012)
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Castillo‐Sepúlveda, J. (2012) · TDX (Tesis Doctorals en Xarxa)
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Elzinga, A., Bragesjö, F., Hallberg, M., Hoshor, A., Kasperowski, D., & Sager, M. (2011) · Gothenburg University Publications Electronic Archive (Gothenburg University)
Bibliography
(2008) · Presses des Mines eBooks · doi:10.4000/books.pressesmines.1593

Authors: Landzelius, K.
Affiliations: University of Gothenburg (SE)
Corresponding author: Landzelius, Kyra
Venue: Social Science & Medicine
Publisher: Elsevier BV
Published: 2006-02
Volume: 62
Issue: 3
Pages: 529-537
ISSN: 0277-9536 (ISSN-L)
DOI: 10.1016/j.socscimed.2005.06.023
OpenAlex: W2038330326
Cited by: 108
References: 41
Citations by year: 2026: 3 · 2025: 2 · 2024: 2 · 2023: 6 · 2022: 7 · 2021: 10 · 2020: 6 · 2018: 5 · 2016: 6 · 2015: 1 · 2014: 7 · 2013: 9 · 2012: 12
FWCI: 11.22
Type: journal article
Language: en
Open access: closed
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
Locations: Social Science & Medicine (publishedVersion)
PubMed (publishedVersion)
RePEc: Research Papers in Economics (submittedVersion)
Funders: Wenner-Gren Foundation
Department of Science and Technology, Ministry of Science and Technology, India
Vetenskapsrådet
Topics: Health Sciences › Health Professions › General Health Professions › Health, Medicine and Society
Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Health Sciences › Health Professions › General Health Professions › Healthcare, Law, Governance, and Management Studies
Keywords: patienthood, health activism, patient mobilization, health care reform, personhood
MeSH terms: Humans, Patient Advocacy, Patient Participation, Politics, Social Change, Sociology, Medical, Voluntary Health Agencies, Health Care Reform, Personal Autonomy, Empirical Research

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Introduction: Patient organization movements and new metamorphoses in patienthood

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