US biomedical and health services researchers are increasingly asked to adopt a more pronounced patient- centered orientation in their work. Such a shift requires a more active engagement of the public (e.g., community representatives) in the research process. As we know from decades of experience with Community Based Participatory Research, active community participation in healthcare research has the potential to make science more transparent;improve the relevance of interventions to patients'needs;enhance the level of cultural sensitivity of healthcare research;boost public engagement in, and use of, research;and facilitate policy efforts to increase healthcare quality and reduce health disparities. At the same time, active research engagement of new stakeholders calls for revisiting some aspects of the scientific process that may traditionally have been just assumed among academics. The meaning and practice of research integrity (RI) is one such topic that is worth revisiting. In the proposed project, we argue that the increasing prominence and promise of partnered work can inform the development of a more thorough understanding of RI by exploring (1) how academic and community research partners conceptualize and maintain RI and (2) how partnered processes might support or undermine RI in a range of research approaches that aim to be patient-centered. First, we will gather a wide range of academic and community perspectives on RI in partnered research to broaden our understanding of RI, identify threats to RI, and explore strategies used to overcome them. We will do so by conducting semi-structured interviews with community and academic partners, asking them to delineate specific strategies that support the RI in partnered work, such as those used to ensure against bias, maintain trust and transparency, safeguard data security, and guarantee subject autonomy. Second, we will explore the extent to which the lessons learned about RI in partnered research, including dimensions of RI, threats to RI, and strategies to overcome them, are relevant and applicable to a range of scientific models, such as bench, translational, comparative effectiveness, and implementation research. We will use an innovative online iterative panel process called ExpertLens to catalogue the viewpoints of a diverse group of researchers and community research leaders working in these scientific fields. We will use these results to generate a set of preliminary guidelines for maintaining RI in research that strives to engage diverse stakeholders. The findings will have high significance because they will improve our understanding of the features of the internal and external environment that can support or undermine responsible research behavior in community-engaged research, and because they will generate recommendations for conducting patient- centered outcomes research with high degree of RI. Results will also form the basis of an R01 application that will empirically assess the impact of partnering on RI across a broad range of scientific projects.
Community participation in research has the potential to address the needs of vulnerable populations and improve the relevance of research to the needs of the community. The proposed project will examine the impact of research partnerships with the community on research integrity. It will also explore the extent to which partnered research approaches could inform the meaning and practice of research integrity in a range of traditional research models. Overall, this project will improve our understanding of how to support research integrity and responsible research practices in research that engages diverse stakeholders.
|Mikesell, Lisa; Bromley, Elizabeth; Khodyakov, Dmitry (2013) Ethical community-engaged research: a literature review. Am J Public Health 103:e7-e14|