In lieu of an abstract, here is a brief excerpt of the content:

  • An Innovative Simulation-based Community-engaged Intervention for Training Research Assistants in Culturally Appropriate Informed Consent
  • Chioma Nnaji, MPH, Med, Marie Boone, MHS, Michele P. Pugnaire, MD, Tawara Goode, MA, Scott Wellman, MD, Ashton R. Gunn, Med, Brenda Jenkins, Joyce McNickles, EdD, Med, Bill Gardiner, Michael Jerry, Mario Santos, Lauren Powell, Sharina Person, PhD, and Jeroan Allison, MD

What Is the Purpose of this Study/Review?

  • • To establish a strong community-based research partnership between Mosaic Cultural Complex (Mosaic), Georgetown University National Center for Cultural Competence (NCCC), and three departments at the University of Massachusetts (UMass) Medical School (UMMS)—UMMS Institutional Review Board, UMass Center for Health Equity and Intervention Research (CHEIR), and the interprofessional Center for Experiential Learning and Simulation (iCELS).

  • • To develop and pilot Simulation-based Community-engaged Research Intervention for Informed Consent Protocol Testing and Training (SCRIIPTT), an innovative simulation-based intervention incorporating cultural and linguistic appropriate approaches into the informed consent training process for research assistants using the expertise and participation of community members.

  • • To bridge relationships between academic institutions and communities of color and, as a long-term result, increase engagement by communities of color in biomedical research as participants, researchers, and educators.

What Is the Problem?

  • • Racially and ethnically diverse people suffer many major health issues in disproportionate numbers, often with increased intensity. These same groups are under-represented participants in biomedical and clinical research.

  • • Low research participation from communities of color stems directly from medical abuses and power imbalances that have created a lack of trust between community and academic research institutions.

  • • Obtaining informed consent from a potential participant is the first step in research and focusing on the informed consent process has been suggested as a strategy for potentially increasing participation of underrepresented communities in research. Therefore, we identified community engagement and training for research staff as two interventions for improving the informed consent process.

What Are the Findings?

  • • The end product was a prototype intervention whereby community members serve as acting research participants to train RAs to deliver culturally appropriate informed consent. The intervention occurred in three parts: 1) training of community advisors, 2) training of research assistants, and 3) a simulation exercise. [End Page 237]

  • • The SCRIIPT intervention includes 1) a training curriculum with slides, background material, and suggestions for prompting discussion, 2) case scenarios to guide the simulation process with encounters based in the hospital, clinic, and community settings, and 3) a 37-item checklist featuring observable skills and behaviors that constitute culturally appropriate informed consent.

  • • The study reveals that the SCRIIPTT intervention is feasible and was well-received by participating research assistants and community advisors.

  • • The intervention promotes co-learning and capacity-building opportunities through community members training researchers on how to deliver informed consent in a culturally appropriate manner, and researchers training community members on the research process and simulation-based interventions.

  • • Community advisors were recruited into the iCELS Standardized Patient program. Standardized patients are lay people trained to simulate a broad range of medical conditions in realistic and consistent patient encounters. They are trained to effectively act as teachers and evaluators of medical students, physician assistant candidates, nursing students, residents, and practicing clinicians. Hence, SCRIIPTT established a pipeline program for community members interested in entry-level health research, education, and training positions at UMMS.

Who Should Care Most?

  • • Biomedical and clinical researchers at academic institutions.

  • • Community-based organizations partnering with academic institutions in community-engaged research projects.

  • • Institutional review boards at academic institutions.

  • • Medical simulation centers at academic institutions.

Recommendations for Action

  • • Significant time is required to build a true community–academic partnership and intentional efforts are required to build trust and relationships.

  • • Partnering with community to use simulation to train research staff in implementing culturally appropriate informed consent should be institutionalized as a part of educational training, the institutional review board process, and community engagement projects. [End Page 238]

Chioma Nnaji
Center Health Equity Intervention Research, Department of Quantitative Health Sciences, University of Massachusetts Medical School
Marie Boone
Mosaic Cultural Complex
Michele P. Pugnaire
Interprofessional Center for Experiential Learning and Simulation, University of Massachusetts Medical School
Tawara Goode
National Center for Cultural Competence
University Center for Excellence in Developmental Disabilities, Center for Child and Human...

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