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      Social impact of participatory health research: collaborative non-linear processes of knowledge mobilization

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          Abstract

          Social impact, defined as an effect on society, culture, quality of life, community services, or public policy beyond academia, is widely considered as a relevant requirement for scientific research, especially in the field of health care. Traditionally, in health research, the process of knowledge transfer is rather linear and one-sided and has not recognized and integrated the expertise of practitioners and those who use services. This can lead to discrimination or disqualification of knowledge and epistemic injustice. Epidemic injustice is a situation wherein certain kinds of knowers and knowledge are not taken seriously into account to define a situation. The purpose of our article is to explore how health researchers can achieve social impact for a wide audience, involving them in a non-linear process of joint learning on urgent problems recognized by the various stakeholders in public health. In participatory health research impact is not preordained by one group of stakeholders, but the result of a process of reflection and dialog with multiple stakeholders on what counts as valuable outcomes. This knowledge mobilization and winding pathway embarked upon during such research have the potential for impact along the way as opposed to the expectation that impact will occur merely at the end of a research project. We will discuss and illustrate the merits of taking a negotiated, discursive and flexible pathway in the area of community-based health promotion.

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          The Many Meanings of Research Utilization

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            How can research organizations more effectively transfer research knowledge to decision makers?

            Five questions--What should be transferred to decision makers? To whom should it be transferred? By whom? How? With what effect?--provide an organizing framework for a knowledge transfer strategy. Opportunities for improving how research organizations transfer research knowledge can be found in the differences between the answers suggested by our understanding of the research literature and those provided by research-organization directors asked to describe what they do. In Canada, these opportunities include developing actionable messages for decision makers (only 30 percent of research organizations frequently or always do this), developing knowledge-uptake skills in target audiences and knowledge-transfer skills in research organizations (only 20 to 22 percent frequently or always do this), and evaluating the impact of knowledge-transfer activities (only 8 to 12 percent frequently or always conduct an evaluation). Research funders can help research organizations take advantage of these opportunities.
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              Patient participation as dialogue: setting research agendas.

              Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue. We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities. The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns. The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions.
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                Author and article information

                Journal
                101718085
                47156
                Educ Action Res
                Educ Action Res
                Educational action research
                0965-0792
                1747-5074
                22 December 2017
                25 May 2017
                2017
                20 August 2018
                : 25
                : 4
                : 489-505
                Affiliations
                Department of Medical Humanities, VU Medical Center, Amsterdam, The Netherlands
                Author notes
                CONTACT Tineke A. Abma, t.abma@ 123456vumc.nl
                Article
                NIHMS925460
                10.1080/09650792.2017.1329092
                6101044
                30135617
                76c83c15-ad8e-45b3-b265-790da85264f4

                This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License ( http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.

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                social impact,participatory,health research,knowledge,mobilization,health,promotion,transfer,action research

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