Patients' Participation in Health Research: A Classification of Cooperation Schemes
- PMID: 34598410
- PMCID: PMC8080474
- DOI: 10.2196/jopm.8933
Patients' Participation in Health Research: A Classification of Cooperation Schemes
Abstract
Background: The number of academic papers referring to patient engagement or to related terms has been rising sharply for at least 20 years; several review articles have recently been published enumerating a wide variety of situations of patient involvement in research and partnership with health professionals.
Objective: As no standardized keywords and no shared classifications exist to facilitate comparative studies of situations where patients and their organizations are recognized as coresearchers, this paper purports to create a typology to analyze those situations.
Methods: Based on 8 already existing meta-reviews or related studies, this work is achieved using a template based on Claude Bernard's conceptualization about experimental medicine.
Results: This typology allows differentiating between modes of involvement and levels of patients reflexivity mobilized in evidence-based medicine (EBM) trials. Screening through a first set of various meta-reviews using this typology shows that a high level of reflexivity is seldom observed and seen only when a patient organization (PO) is involved in the process. This suggests that such an organization can play several roles essential to high reflexivity trials; the PO is capable not only of grouping singular approaches but also of synchronizing and correlating them. However, as nowadays health researchers and POs give more attention to syndromes or troubles for which EBM clinical trials are not relevant due to lack of biomedical indicators (eg, fibromyalgia, chronic fatigue syndrome, or psychiatric disorders), a supplementary mediation category is added to take into account action-research, community-based participatory research, and grounded theories.
Conclusions: With this new category, this typology should be able to classify most of the cooperation schemes and thus be a useful tool for the next systematic reviews.
Keywords: bibliometrics; patient engagement; patient organization; popular epidemiology; typology.
©Olivier Las Vergnas. Originally published in Journal of Participatory Medicine (http://jopm.jmir.org), 12.10.2017.
Conflict of interest statement
Conflicts of Interest: None declared.
Figures
Similar articles
-
The future of Cochrane Neonatal.Early Hum Dev. 2020 Nov;150:105191. doi: 10.1016/j.earlhumdev.2020.105191. Epub 2020 Sep 12. Early Hum Dev. 2020. PMID: 33036834
-
The Effectiveness of Integrated Care Pathways for Adults and Children in Health Care Settings: A Systematic Review.JBI Libr Syst Rev. 2009;7(3):80-129. doi: 10.11124/01938924-200907030-00001. JBI Libr Syst Rev. 2009. PMID: 27820426
-
Promoting and supporting self-management for adults living in the community with physical chronic illness: A systematic review of the effectiveness and meaningfulness of the patient-practitioner encounter.JBI Libr Syst Rev. 2009;7(13):492-582. doi: 10.11124/01938924-200907130-00001. JBI Libr Syst Rev. 2009. PMID: 27819974
-
Health professionals' experience of teamwork education in acute hospital settings: a systematic review of qualitative literature.JBI Database System Rev Implement Rep. 2016 Apr;14(4):96-137. doi: 10.11124/JBISRIR-2016-1843. JBI Database System Rev Implement Rep. 2016. PMID: 27532314 Review.
-
Systematic reviews of the effectiveness of day care for people with severe mental disorders: (1) acute day hospital versus admission; (2) vocational rehabilitation; (3) day hospital versus outpatient care.Health Technol Assess. 2001;5(21):1-75. doi: 10.3310/hta5210. Health Technol Assess. 2001. PMID: 11532238 Review.
Cited by
-
Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review.J Particip Med. 2021 Jun 10;13(2):e27141. doi: 10.2196/27141. J Particip Med. 2021. PMID: 34110293 Free PMC article. Review.
-
Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment.Health Soc Care Community. 2022 Jan;30(1):1-10. doi: 10.1111/hsc.13376. Epub 2021 Apr 6. Health Soc Care Community. 2022. PMID: 33825299 Free PMC article. Review.
-
Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study.J Particip Med. 2019 Nov 12;11(4):e15174. doi: 10.2196/15174. J Particip Med. 2019. PMID: 33055067 Free PMC article.
References
-
- Shippee ND, Domecq GJP, Prutsky LGJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ, Montori VM, Murad MH. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015 Oct;18(5):1151–1166. doi: 10.1111/hex.12090. http://europepmc.org/abstract/MED/23731468 - DOI - PMC - PubMed
-
- Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P, Eton D, Sloan J, Montori V, Asi N, Dabrh AMA, Murad MH. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. doi: 10.1186/1472-6963-14-89. http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-89 - DOI - DOI - PMC - PubMed
-
- Jouet E, Las Vergnas O, Noel-Hureaux E, editors. Nouvelles Coopérations Réflexives en Santé. Paris: editions des Archives Contemporaines; 2014.
-
- Bernard C. An Introduction to the Study of Experimental Medicine. London: Macmillan and Co; 1927.
Publication types
LinkOut - more resources
Full Text Sources
Research Materials