Abstract
BackgroundCommunity engagement is increasingly recognized as a valuable tool in clinical and translational research; however, the impact of engagement is not fully understood. No standard nomenclature yet exists to clearly define how research changes when community stakeholders are engaged across the research spectrum. This severely limits our ability to assess the value of community engagement in research. To address this gap, we developed a taxonomy for characterizing and classifying changes in research due to community engagement.MethodsUsing an iterative process, we (a) identified areas of potential impact associated with community engagement from author experience, (b) categorized these in taxonomic bins based on research stages, (c) conducted semi‐structured interviews with researchers and community stakeholders, (d) validated the codebook in a sample dataset and (e) refined the taxonomy based on the validation. Community stakeholders were involved in every step of the process including as members of the primary study team.ResultsThe final taxonomy catalogues changes into eleven domains corresponding to research phases. Each domain includes 2‐4 dimensions depicting concepts within the domain's scope and, within each dimension, 2‐10 elements labelling activities through which community engagement could change research.ConclusionsCommunity engagement has great potential to enhance clinical and translational research. This taxonomy provides a common vocabulary and framework for understanding the impact of community engagement and suggests metrics for assessing the value of community engagement in research.
Highlights
Community engagement is increasingly recognized as a valuable tool in clinical and translational research; the impact of engagement is not fully understood
Patient and community stakeholders are being involved in re‐shap‐ ing priorities for health research, setting the research agenda, estab‐ lishing a presence on proposal review committees, and translating research results into understood findings for the public au‐ dience.[1,2,3]
Lagging behind the growth of new stakeholder engagement ap‐ proaches is the development of tools for evaluating, comparing and evolving those approaches, and there is an urgent need to develop these tools to demonstrate the impact of community stakeholder engagement in research.[11,15,16]
Summary
Patient and community stakeholders are being involved in re‐shap‐ ing priorities for health research, setting the research agenda, estab‐ lishing a presence on proposal review committees, and translating research results into understood findings for the public au‐ dience.[1,2,3] Viewed retrospectively, community stakeholders' con‐ tributions have added community needs to research priorities,[4] produced culturally tailored and targeted recruitment strategies[5] and patient‐oriented study material,[6] enhanced approaches to re‐ search design and implementation,[7] and improved translation and dissemination of research findings. 24-28 Other stakeholder engagement efforts are illustrative of the benefits of improving vocabulary around this topic These include the following: stakeholder engagement frameworks and guidance not focused on community stakeholders ,[18,29,30] a scale‐ able approach to patient engagement for patient‐centred outcomes research (PCOR),[31] successful patient engagement for health‐care experiences and outcomes,[32,33] and community engagement mea‐ sures focused on partnership strength.[19,34] evaluat‐ ing community stakeholders' contributions to research, needs a framework focused on characterizing and measuring community representative activities through the pro‐ cess of conceiving, conducing, analysing and reporting clinical and translational research.
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