Priority Populations Toolkits: Enhancing researcher readiness to work with priority populations.

The National Center for Advancing Translational Sciences has called for more comprehensive research with priority populations to reduce disparities and for the development of additional resources to assist researchers in implementing these recommendations. Here we report the development and initial evaluation of five Priority Populations Toolkits, which are resources developed by the University of Illinois Center for Clinical and Translational Science to meet these goals. Three aims guide the content: increasing knowledge, facilitating communication, and improving research design. Materials were curated from scientific literature reviews and Internet searches and revised iteratively. Analytics and user surveys provide information about usage. In 22 months, 387 unique users accessed the toolkits. The top reason for usage was to improve research recruitment. Comprehensive toolkits for working with priority populations show promising potential for increasing knowledge and readiness to work with underrepresented populations. Further toolkit development and evaluation of effectiveness are warranted.

White Paper from a CTSA Workshop Series on Special and Underserved Populations: Enhancing Investigator Readiness to Conduct Research Involving LGBT Populations.

Despite the significant health disparities experienced by lesbian, gay, bisexual and transgender (LGBT) populations, few investigators affiliated with NIH-funded Clinical and Translational Science Award (CTSA) programs are conducting research related to this underserved population. We provide recommendations shared during a half-day workshop aimed at increasing researcher readiness to conduct LGBT research. This workshop was presented as part of a series on conducting research with underserved populations offered by the Recruitment, Retention, and Community Engagement Program of the Center for Clinical and Translational Science at the University of Illinois at Chicago. Six LGBT health research experts provided focused presentations. The workshop presentations included a summary of significant health inequality issues, theoretical models relevant to research on LGBT health, best practices in measuring sexual orientation and gender identity, recommendations for recruitment and retention, a discussion of community engagement, and ethical considerations in conducting LGBT research. We provide a summary of recommendations to guide future research, training, and public policy related to LGBT health. The information can increase capacity among CTSA affiliated researchers in conducting research in this special population.

Ready or not? Observations from a long-standing community engagement advisory board about investigator competencies for community-engaged research.

Preparing investigators to competently conduct community-engaged research is critical to achieving Clinical and Translational Science Award (CTSA) program goals. The purpose of this study is to describe the perspectives of members of a long-standing community engagement advisory board (CEAB) on investigators' readiness to engage communities and indicators of investigator competence in community-engaged research, in order to suggest core competencies to guide the development of CTSA-sponsored educational programs. Two 90-minute focus groups were conducted with a subset of members of a CEAB (n=19) affiliated with the Center for Clinical and Translational Science at the University of Illinois at Chicago. CEAB members identified a range of investigator skills and practices that demonstrate readiness to engage in community-engaged research. Eight competencies were identified that should be incorporated in providing education to enhance the readiness and competency of CTSA-affiliated researchers planning to engage communities in research. CEAB observations demonstrate the necessity of developing competency-based educational programs that prepare clinical and translational scientists at all levels for the important work of community-engaged research.

Development, implementation, and evaluation of a Community Engagement Advisory Board: Strategies for maximizing success.

INTRODUCTION: The purpose of this paper is to describe the formation, operation, and evaluation of a Community Engagement Advisory Board (CEAB) that serves as a resource of the University of Illinois at Chicago's (UIC) Center for Clinical and Translational Sciences (CCTS). METHODS: Current CEAB roles and functions, operating procedures for research consultations and program evaluation strategies were described. Investigators receiving a consultation from 2009 to 2017 (n = 91, response rate 78%) were surveyed via an online survey immediately after the consultation and at 12-month follow-up. RESULTS: Overall, CEAB members were viewed as having sufficient information (92%) and expertise (79%) to provide consultation. Satisfaction levels with the specific consultation received and the overall consultation service were high. The majority of investigators indicated that they would come back to the CEAB for a future consultation, if needed, and would recommend a consultation to others (93% and 96%, respectively). At 12-months, 87% of respondents indicated they had implemented at least some of the recommendations received and 93% said that the consultation influenced their subsequent research. CONCLUSIONS: Data from recent annual evaluations highlight the benefits of CEAB for consulting investigators. Our model can be used to inform the development of future CEAB boards.

Evaluation of 3 approaches for increasing patient engagement in clinical research: Feedback from a community engagement advisory board.

INTRODUCTION: The purpose of this study was to obtain feedback from a diverse group of community advisory board members about different clinic or hospital-based approaches to increasing research participation. METHODS: Members of an established community engagement advisory board (n=16) provided qualitative and survey data regarding attitudes and preferences for 3 hospital and clinic system strategies to recruit patients into clinical research including universal consent for research, patient registries, and patient portals. RESULTS: Overall, there was moderate support for each of the 3 approaches discussed. Board members described advantages and disadvantages of each method. Based on the qualitative data, universal consent was viewed as the best strategy for consenting high volumes of patients for research. However, patient registries and portals were seen as more acceptable, less-intrusive and more likely to result in higher participation rates. Survey data were consistent with qualitative findings. CONCLUSIONS: Input from community stakeholders is needed to identify strategies to enhance participation and increase diversity in clinical research. Members of our CEAB identified patient registries and portals as feasible and nonintrusive approaches to increasing research participation. Additional research is needed to confirm these findings and to establish best practices for supporting patients in using registry approaches.

A Community Engagement Advisory Board as a strategy to improve research engagement and build institutional capacity for community-engaged research.

PURPOSE: 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. METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.