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Background Better use of research evidence (one form of “knowledge”) in health systems requires partnerships between researchers and those who contend with the real-world needs and constraints of health systems. Community-based participatory research (CBPR) and integrated knowledge translation (IKT) are research approaches that emphasize the importance of creating partnerships between researchers and the people for whom the research is ultimately meant to be of use (“knowledge users”). There exist poor understandings of the ways in which these approaches converge and diverge. Better understanding of the similarities and differences between CBPR and IKT will enable researchers to use these approaches appropriately and to leverage best practices and knowledge from each. The co-creation of knowledge conveys promise of significant social impacts, and further understandings of how to engage and involve knowledge users in research are needed. Main text We examine the histories and traditions of CBPR and IKT, as well as their points of convergence and divergence. We critically evaluate the ways in which both have the potential to contribute to the development and integration of knowledge in health systems. As distinct research traditions, the underlying drivers and rationale for CBPR and IKT have similarities and differences across the areas of motivation, social location, and ethics; nevertheless, the practices of CBPR and IKT converge upon a common aim: the co-creation of knowledge that is the result of knowledge user and researcher expertise. We argue that while CBPR and IKT both have the potential to contribute evidence to implementation science and practices for collaborative research, clarity for the purpose of the research—social change or application—is a critical feature in the selection of an appropriate collaborative approach to build knowledge. Conclusion CBPR and IKT bring distinct strengths to a common aim: to foster democratic processes in the co-creation of knowledge. As research approaches, they create opportunities to challenge assumptions about for whom, how, and what is defined as knowledge, and to develop and integrate research findings into health systems. When used appropriately, CBPR and IKT both have the potential to contribute to and advance implementation science about the conduct of collaborative health systems research.

Context: Co-creation—collaborative knowledge generation by academics working alongside other stakeholders—reflects a \"Mode 2\" relationship (knowledge production rather than knowledge translation) between universities and society. Co-creation is widely believed to increase research impact. Methods: We undertook a narrative review of different models of co-creation relevant to community-based health services. We contrasted their diverse disciplinary roots and highlighted their common philosophical assumptions, principles of success, and explanations for failures. We applied these to an empirical case study of a community-based research-service partnership led by the Centre of Research Excellence in Quality and Safety in Integrated Primary-Secondary Care at the University of Queensland, Australia. Findings: Co-creation emerged independently in several fields, including business studies (\"value co-creation\"), design science (\"experience-based co-design\"), computer science (\"technology co-design\"), and community development (\"participatory research\"). These diverse models share some common features, which were also evident in the case study. Key success principles included (1) a systems perspective (assuming emergence, local adaptation, and nonlinearity); (2) the framing of research as a creative enterprise with human experience at its core; and (3) an emphasis on process (the framing of the program, the nature of relationships, and governance and facilitation arrangements, especially the style of leadership and how conflict is managed). In both the literature review and the case study, co-creation \"failures\" could often be tracked back to abandoning (or never adopting) these principles. All co-creation models made strong claims for significant and sustainable societal impacts as a result of the adaptive and developmental research process; these were illustrated in the case study. Conclusions: Co-creation models have high potential for societal impact but depend critically on key success principles. To capture the nonlinear chains of causation in the co-creation pathway, impact metrics must reflect the dynamic nature and complex interdependencies of health research systems and address processes as well as outcomes.

Context: Communities, funding agencies, and institutions are increasingly involving community stakeholders as partners in research. Community stakeholders can provide firsthand knowledge and insight, thereby increasing research relevance and feasibility. Despite the greater emphasis and use of community-academic partnerships (CAP) across multiple disciplines, definitions of partnerships and methodologies vary greatly, and no systematic reviews consolidating this literature have been published. The purpose of this article, then, is to facilitate the continued growth of this field by examining the characteristics of CAPs and the current state of the science, identifying the facilitating and hindering influences on the collaborative process, and developing a common term and conceptual definition for use across disciplines. Methods: Our systematic search of 6 major literature databases generated 1,332 unique articles, 50 of which met our criteria for inclusion and provided data on 54 unique CAPs. We then analyzed studies to describe CAP characteristics and to identify the terms and methods used, as well as the common influences on the CAP process and distal outcomes. Findings: CAP research spans disciplines, involves a variety of community stakeholders, and focuses on a large range of study topics. CAP research articles, however, rarely report characteristics such as membership numbers or duration. Most studies involved case studies using qualitative methods to collect data on the collaborative process. Although various terms were used to describe collaborative partnerships, few studies provided conceptual definitions. Twenty-three facilitating and hindering factors influencing the CAP collaboration process emerged from the literature. Outcomes from the CAPs most often included developing or refining tangible products. Conclusions: Based on our systematic review, we recommend using a single term, community-academic partnership, as well as a conceptual definition to unite multiple research disciplines. In addition, CAP characteristics and methods should be reported more systematically to advance the field (eg, to develop CAP evaluation tools). We have identified the most common influences that facilitate and hinder CAPs, which in turn should guide their development and sustainment.

This scoping review identifies the best practices of community-based participatory research with Pacific Islanders in the United States and United States Affiliated Pacific Islands. Eighty-four articles from January 2000 to December 2017 were included in the review. Best practices included the importance of engaging Pacific Islander community leaders as research staff, community co-investigators, and community advisory board members. Best practices also focused on removing barriers to research by using participants' native languages, conducting research within the geographic community, and spending significant time to build trust. Novel best practices included honoring Pacific Islanders' cultural practices such as protocols for engagement, reciprocity, and social and spiritual inclusiveness and honoring Pacific Islanders' collectivist cultural structure. The goal of this scoping review is to aid community-academic partnerships working to improve the health of Pacific Islanders.

Young people are not satisfied with the sexuality education they receive in Dutch high schools. They rate their sexuality education as mediocre (5.8 on a scale of one to ten). In cooperation with 17 young peer researchers, we explored what good sexuality education looks like from the point of view of young people. The peer researchers collected data in their own high school, using mixed methods, starting with individual interviews, followed by focus group discussions and Photovoice sessions to get more in-depth views on topics, class atmosphere, and teacher skills. In total, 300 pupils aged 12–18 participated in the research. Our findings demonstrate that young people want more sexuality education, during their whole school career. They want sexuality education to move beyond biological functions, sexually transmitted diseases, and reproduction into issues like dating, online behavior, sexual pleasure, relationships, and sexual coercion. Moreover, pupils want sexual diversity integrated and normalized in all content. One of the main issues is that sexuality education should be given in a safe class atmosphere, which demands sensitivity from the teacher. In addition to the findings of the study, this article reflects on the steps to be taken to realize the changes desired by young people.

As participant-led health research increases, Effy Vayena and and John Tasioulas examine what ethical questions are raised, and what types of standards need to be developed for appropriate ethical oversight for participant-led research projects.

Community-based participatory research (CBPR) has been widely used in public health research in the last decade as an approach to develop culturally centered interventions and collaborative research processes in which communities are directly involved in the construction and implementation of these interventions and in other application of findings. Little is known, however, about CBPR pathways of change and how these academic-community collaborations may contribute to successful outcomes. A new health CBPR conceptual model (Wallerstein N, Oetzel JG, Duran et al. CBPR: What predicts outcomes? In: Minkler M, Wallerstein N (eds). Communication Based Participatory Research, 2nd edn. San Francisco, CA: John Wiley & Co., 2008) suggests that relationships between four components: context, group dynamics, the extent of community-centeredness in intervention and/or research design and the impact of these participatory processes on CBPR system change and health outcomes. This article seeks to identify instruments and measures in a comprehensive literature review that relates to these distinct components of the CBPR model and to present them in an organized and indexed format for researcher use. Specifically, 258 articles were identified in a review of CBPR (and related) literature from 2002 to 2008. Based on this review and from recommendations of a national advisory board, 46 CBPR instruments were identified and each was reviewed and coded using the CBPR logic model. The 46 instruments yielded 224 individual measures of characteristics in the CBPR model. While this study does not investigate the quality of the instruments, it does provide information about reliability and validity for specific measures. Group dynamics proved to have the largest number of identified measures, while context and CBPR system and health outcomes had the least. Consistent with other summaries of instruments, such as Granner and Sharpens inventory (Granner ML, Sharpe PA. Evaluating community coalition characteristics and functioning: a summary of measurement tools. Health Educ Res 2004; 19: 514-32), validity and reliability information were often lacking, and one or both were only available for 65 of the 224 measures. This summary of measures provides a place to start for new and continuing partnerships seeking to evaluate their progress.

This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research. Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews. During workshops, participants generated and refined ideas for an open-ended survey question and provided feedback on a study invitation letter. The use of a single, open-ended question aims to minimise participant burden while collecting rich information about needs and experiences. The research team then shortlisted the question ideas and revised study invitation materials based on workshop feedback. Next, using interviews, community members were asked to respond to a shortlisted question to test its interpretability and relevance and to review revised invitation materials. Content analysis of participant feedback was used to identify principles for designing study materials. Principles for designing qualitative survey questions were identified from participant feedback, including define the question timeframe and scope; provide reassurance that responses are valid and valued; and use simple wording. Principles for designing study invitation materials were also identified, including communicate empathy and sensitivity; facilitate reciprocal benefit; and include a 'human element'. The qualitative survey question and study invitation materials created using these principles were considered relevant and acceptable for use in a population-based survey. Through community consultation and co-design, this study identified principles for designing qualitative data collection and invitation materials for use in cancer survivorship research. These principles can be applied by other researchers to develop study materials that are sensitive to the needs and preferences of community members.

Numerous conceptual frameworks have been developed to understand how community-based participatory research (CBPR) partnerships function, and multiple measurement approaches have been designed to evaluate them. However, most measures are not validated, and have focused on new partnerships. To define and assess the meaning of success in long-standing CBPR partnerships, we are conducting a CBPR study, Measurement Approaches to Partnership Success (MAPS). In this article we describe the theoretical underpinnings and methodological approaches used. The objectives of this study are to 1) develop a questionnaire to evaluate success in long-standing CBPR partnerships, 2) test the psychometric qualities of the questionnaire, 3) assess the relationships between key variables and refine the questionnaire and theoretical model, and 4) develop mechanisms and a feedback tool to apply partnership evaluation findings. Methodological approaches have included: engaged a community-academic national Expert Panel; conducted key informant interviews with Expert Panel; conducted a scoping literature review; conducted a Delphi process with the Expert Panel; and revised the measurement instrument. Additional methods include: conduct cognitive interviews and pilot testing; revise and test final version of the questionnaire with long-standing CBPR partnerships; examine the reliability and validity; analyze the relationship among variables in the framework; revise the framework; and develop a feedback mechanism for sharing partnership evaluation results. Through the application of a theoretical model and multiple methodological approaches, the MAPS study will result in a validated measurement instrument and will develop procedures for effectively feeding back evaluation findings in order to strengthen authentic partnerships to achieve health equity.

Objectives. We examined how National Cancer Institute–funded Community Network Programs (CNPs) operationalized principles of community-based participatory research (CBPR). Methods. We reviewed the literature and extant CBPR measurement tools. On the basis of that review, we developed a 27-item questionnaire for CNPs to self-assess their operationalization of 9 CBPR principles. Our team comprised representatives of 9 of the National Cancer Institute's 25 CNPs. Results. Of the 25 CNPs, 22 (88%) completed the questionnaire. Most scored well on CBPR principles of recognizing community as a unit of identity, building on community strengths, facilitating colearning, embracing iterative processes in developing community capacity, and achieving a balance between data generation and intervention. CNPs varied in the extent to which they employed CBPR principles of addressing determinants of health, sharing power among partners, engaging the community in research dissemination, and striving for sustainability. Conclusions. Although the development of assessment tools in this field is in its infancy, our findings suggest that fidelity to CBPR processes can be assessed in a variety of settings.