Journal of Clinical and Translational Science - Latest issue

Community engagement is deemed as critical to the success of the CTSA program. In 2009, to improve research engagement and build capacity for community-engaged research across the translational spectrum, the Center for Clinical and Translational Science at the University of Illinois at Chicago created a Community Engagement Advisory Board (CEAB). Here, we report results of our ongoing evaluation efforts.

CEAB activities are evaluated using mixed methods. Annual CEAB evaluation surveys were completed from 2010 to 2016 (n=106 respondents). In 2014, two 90-minute focus groups were conducted with a subset of recent CEAB members (n=19).

Survey data suggest respondents perceive their consultations to be helpful in improving the capacity of researchers (90%) and the quality of research projects (80%). Further, CEAB members perceive themselves to have personally benefitted from their involvement including obtaining new knowledge (84%), expansion of their networks (76%), and forming new community linkages (51%). Results of the qualitative data were consistent with survey data.

Our CEAB has improved research engagement and developed institutional capacity to conduct community-engaged research in several ways. Our findings can inform the establishment or enhancement of community engagement services for CTSA-affiliated researchers and community partners.

Effective translational research requires engagement and collaboration between communities, researchers, and practitioners. We describe a community scientist academy (CSA) developed at the suggestion of our Clinical and Translational Science Awards’ (CTSA) community advisory board to engage and capacitate community members by (1) increasing community members’ and patients’ understanding about the research process and (2) increasing their access to opportunities to influence and participate in research. A joint CTSA/community planning committee developed this 8-hour workshop including sessions on: (1) research definitions and processes; (2) study design; (3) study implementation; and (4) ways to get involved in research. The workshop format includes interactive exercises, content slides and videos, and researcher and community presenters.

Community-based information sessions allowed assessment of community interest before piloting. Two pilots of the CSA were conducted with community members and patients. Participant data and a pre/post knowledge and feedback survey provide evaluation data.

The pilot included 24 diverse participants, over half of whom had not previously participated in research. Evaluation data suggest knowledge gains. Post-CSA, one-third have reviewed CTSA pilot grants and over 80% want to attend further training.

The CSA can demystify the research process for those underrepresented in research and facilitate their engagement and influence within CTSAs.

The goal of this project was to document the current state of a community-academic partnership, identifying early successes and lessons learned.

We employed qualitative methods, semi-structured interviews and document analysis, from 2 data sources to (1) show how the principles of community-based participatory research are enacted through the activities of Addressing Disparities in Asian Populations through Translational Research (ADAPT) and (2) elucidate the barriers and facilitators to adhering to those principles from the perspectives of the members themselves.

In addition to established community-based participatory research values, understanding individuals’ motivations for participation, the challenges aligning the priorities of community organizations and academic partners, and definitions of success are themes that emerged as key to the process of maintaining this partnership.

As the emphasis on community-academic partnerships grows, there is potential for clinical and translational science awards to use community engagement to facilitate translational research beyond the traditional medical spheres of influence and to forge relationships with affected communities.

Innovative evidence-based interventions are needed to equip research mentors with skills to address cultural diversity within research mentoring relationships. A pilot study assessed initial outcomes of a culturally tailored effort to create and disseminate a novel intervention titled Culturally Aware Mentoring (CAM) for research mentors.

Intervention development resulted in 4 products: a 6 hour CAM training curriculum, a facilitator guide, an online pretraining module, and metrics to evaluate the effectiveness of CAM training.

Participants were 64 research mentors from 3 US research-intensive universities. Quantitative pretraining and posttraining evaluation survey data were collected.

Participants found high value and satisfaction with the CAM training, reported gains in personal cultural awareness and cultural skills, and increased intentions and confidence to address cultural diversity in their mentoring.

Study findings indicate that the CAM training holds promise to build research mentors’ capacity and confidence to engage directly with racial/ethnic topics in research mentoring relationships.

The Best Practices in Social and Behavioral Research Course was developed to provide instruction on good clinical practice for social and behavioral trials. This study evaluated the new course.

Participants across 4 universities took the course (n=294) and were sent surveys following course completion and 2 months later. Outcomes included relevance, how engaging the course was, and working differently because of the course. Open-ended questions were posed to understand how work was impacted.

Participants rated the course as relevant and engaging (6.4 and 5.8/7 points) and reported working differently (4.7/7 points). Participants with less experience in social and behavioral trials were most likely to report working differently 2 months later.

The course was perceived as relevant and engaging. Participants described actions taken to improve rigor in implementing trials. Future studies with a larger sample and additional participating sites are recommended.

To quantifying the interdependency within the regulatory environment governing human subject research, including Institutional Review Boards (IRBs), federally mandated Medicare coverage analysis and contract negotiations.

Over 8000 IRB, coverage analysis and contract applications initiated between 2013 and 2016 were analyzed using traditional and machine learning analytics for a quality improvement effort to improve the time required to authorize the start of human research studies.

Staffing ratios, study characteristics such as the number of arms, source of funding and number and type of ancillary reviews significantly influenced the timelines. Using key variables, a predictive algorithm identified outliers for a workflow distinct from the standard process. Improved communication between regulatory units, integration of common functions, and education outreach improved the regulatory approval process.

Understanding and improving the interdependencies between IRB, coverage analysis and contract negotiation offices requires a systems approach and might benefit from predictive analytics.

The Clinical and Translational Science Award (CTSA) institutions are increasing development of training programs in community-engaged research (CEnR) to support translational science.

This study sampled posters at CTSA national meetings to identify CEnR training approaches, topics, and outcomes.

Qualitative analysis of 30 posters revealed training topics and outcomes focused primarily on CEnR capacity building, overcoming barriers, systems change, and sustainability.

Further research should focus on development and results of CTSA CEnR training program metrics.