Researcher perspectives on embedding community stakeholders in T1-T2 research: A potential new model for full-spectrum translational research.

Sheba George,Martin F Shapiro,Bernice Coleman,Stefanie D Vassar,D’Ann Morris,Anna Lucas-Wright,Arleen F Brown,Norma Mtume,Cynthia Gonzalez,Mariko Ishimori,Keith Norris

doi:10.1017/cts.2019.384

Abstract

Effective community engagement in T3-T4 research is widespread, however, similar stakeholder involvement is missing in T1-T2 research. As part of an effort to embed community stakeholders in T1-T2 research, an academic community partnered team conducted discussion groups with researchers to assess perspectives on (1) barriers/challenges to including community stakeholders in basic science, (2) skills/training required for stakeholders and researchers, and (3) potential benefits of these activities. Engaging community in basic science research was perceived as challenging but with exciting potential to incorporate "real-life" community health priorities into basic research, resulting in a new full-spectrum translational research model.

Highlights

The National Center for Advancing Translational Sciences (NCATS) is committed to “research in the science of translation, to : : : the scientific foundation for improvements in translational efficiency that will accelerate the realization of interventions that improve human health”[1]; perspectives on how to achieve this aim have undergone substantial change
The five discussion groups included 37 researchers, 75% of whom were engaged in basic science studies and 25% were in clinical research; 81% of the researchers held an academic position, 11% were post-doctoral researchers, and 8% were laboratory managers (Table 1); and almost 80% had received National Institutes of Health (NIH) funding
Researchers suggested that community stakeholders with education in other fields have different perspectives that can be usefully applied to research (Table 2)

Summary

Introduction

The National Center for Advancing Translational Sciences (NCATS) is committed to “research in the science of translation, to : : : (provide) the scientific foundation for improvements in translational efficiency that will accelerate the realization of interventions that improve human health”[1]; perspectives on how to achieve this aim have undergone substantial change. Translational research frameworks generally depicted a linear process that starts with discovery at the basic science level (referred to as T0); followed by translation to humans in Phase 1 clinical trials (T1), in Phase 2 and 3 clinical trials (T2); progressing to incorporation into healthcare practice (T3); and concluding with widespread dissemination to communities through population level research and policy (T4). Emerging frameworks suggest more complex models of iterative translation that incorporate bidirectional engagement between investigators and both clinical and community stakeholders and investigators across the translational spectrum and at multiple times [2,3,4]. Participation in translational research by community stakeholders – defined broadly here to include patients, families, disease advocacy groups, healthcare providers, clinical researchers, faith-based organizations, and local health departments – can help to ensure relevance and to speed up the translation of discoveries [5,6]. Progress in engagement in early translational research will require more substantial understanding of barriers and benefits for both stakeholders and researchers and discussions between them

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Conclusion