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      Participatory epidemiology: the contribution of participatory research to epidemiology

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          Abstract

          Background

          Epidemiology has contributed in many ways to identifying various risk factors for disease and to promoting population health. However, there is a continuing debate about the ability of epidemiology not only to describe, but also to provide results which can be better translated into public health practice. It has been proposed that participatory research approaches be applied to epidemiology as a way to bridge this gap between description and action. A systematic account of what constitutes participatory epidemiology practice has, however, been lacking.

          Methods

          A scoping review was carried out focused on the question of what constitutes participatory approaches to epidemiology for the purpose of demonstrating their potential for advancing epidemiologic research. Relevant databases were searched, including both the published and non-published (grey) literature. The 102 identified sources were analyzed in terms of comparing common epidemiologic approaches to participatory counterparts regarding central aspects of the research process. Exemplary studies applying participatory approaches were examined more closely.

          Results

          A highly diverse, interdisciplinary body of literature was synthesized, resulting in a framework comprised of seven aspects of the research process: research goal, research question, population, context, data synthesis, research management, and dissemination of findings. The framework specifies how participatory approaches not only differ from, but also how they can enhance common approaches in epidemiology. Finally, recommendations for the further development of participatory approaches are given. These include: enhancing data collection, data analysis, and data validation; advancing capacity building for research at the local level; and developing data synthesis.

          Conclusion

          The proposed framework provides a basis for systematically developing the emergent science of participatory epidemiology.

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          Most cited references 89

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          Bringing context back into epidemiology: variables and fallacies in multilevel analysis.

           A Diez-Roux (1998)
          A large portion of current epidemiologic research is based on methodologic individualism: the notion that the distribution of health and disease in populations can be explained exclusively in terms of the characteristics of individuals. The present paper discusses the need to include group- or macro-level variables in epidemiologic studies, thus incorporating multiple levels of determination in the study of health outcomes. These types of analyses, which have been called contextual or multi-level analyses, challenge epidemiologists to develop theoretical models of disease causation that extend across levels and explain how group-level and individual-level variables interact in shaping health and disease. They also raise a series of methodological issues, including the need to select the appropriate contextual unit and contextual variables, to correctly specify the individual-level model, and, in some cases, to account for residual correlation between individuals within contexts. Despite its complexities, multilevel analysis holds potential for reemphasizing the role of macro-level variables in shaping health and disease in populations.
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            Epidemiology and the web of causation: has anyone seen the spider?

             John Krieger (1994)
            'Multiple causation' is the canon of contemporary epidemiology, and its metaphor and model is the 'web of causation.' First articulated in a 1960 U.S. epidemiology textbook, the 'web' remains a widely accepted but poorly elaborated model, reflecting in part the contemporary stress on epidemiologic methods over epidemiologic theories of disease causation. This essay discusses the origins, features, and problems of the 'web,' including its hidden reliance upon the framework of biomedical individualism to guide the choice of factors incorporated in the 'web.' Posing the question of the whereabouts of the putative 'spider,' the author examines several contemporary approaches to epidemiologic theory, including those which stress biological evolution and adaptation and those which emphasize the social production of disease. To better integrate biologic and social understandings of current and changing population patterns of health and disease, the essay proposes an ecosocial framework for developing epidemiologic theory. Features of this alternative approach are discussed, a preliminary image is offered, and debate is encouraged.
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              Choosing a future for epidemiology: II. From black box to Chinese boxes and eco-epidemiology.

               E. Susser,  M Susser (1996)
              Part I of this paper traced the evolution of modern epidemiology in terms of three eras, each with its dominant paradigm, culminating in the present era of chronic disease epidemiology with its paradigm, the black box. This paper sees the close of the present era and foresees a new era of eco-epidemiology in which the deployment of a different paradigm will be crucial. Here a paradigm is advocated for the emergent era. Encompassing many levels of organization--molecular and societal as well as individual--this paradigm, termed Chinese boxes, aims to integrate more than a single level in design, analysis, and interpretation. Such a paradigm could sustain and refine a public health-oriented epidemiology. But preventing a decline of creative epidemiology in this new era will require more than a cogent scientific paradigm. Attention will have to be paid to the social processes that foster a cohesive and humane discipline.
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                Author and article information

                Contributors
                BachM@rki.de
                JordanS@rki.de
                Susanne.Hartung@KHSB-Berlin.de
                Santos-HoevenerC@rki.de
                Michael.Wright@KHSB-Berlin.de
                Journal
                Emerg Themes Epidemiol
                Emerg Themes Epidemiol
                Emerging Themes in Epidemiology
                BioMed Central (London )
                1742-7622
                10 February 2017
                10 February 2017
                2017
                : 14
                Affiliations
                [1 ]ISNI 0000 0001 0940 3744, GRID grid.13652.33, , Robert Koch Institute, ; Berlin, Germany
                [2 ]GRID grid.465920.c, , Catholic University of Applied Sciences Berlin, ; Berlin, Germany
                Article
                56
                10.1186/s12982-017-0056-4
                5301332
                © The Author(s) 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Funding
                Funded by: German Federal Ministry of Education and Research (BMBF)
                Award ID: BMBF 01EL1423F
                Categories
                Review
                Custom metadata
                © The Author(s) 2017

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