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

Abstract

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.

Increasing Racial and Ethnic Equity, Diversity, and Inclusion in Cancer Treatment Trials: Evaluation of an ASCO-Association of Community Cancer Centers Site Self-Assessment

“… 7 , 23 , 30 Collecting standardized patient demographic data is a prerequisite to developing tailored interventions to address site-based barriers to enrollment 16 and yet these standards are lacking (not only race/ethnicity but also sexual orientation and gender identity). 31 Although tools and resources have been developed to address EDI across the trial enrollment continuum, 21 , 32 few interventions have been designed to enable different types of trial sites and programs to collect and review their own internal data as a foundation for identifying and addressing deficits in the screening and enrollment process. 33 , 34 Part 2 of the Assessment was successful in this regard and was able to detect variability between site responses, items, and domains.…”

“…[10][11][12][13][14][15][16] Such tools are often specific to a therapeutic area or type of research program 17 ; address patient-based barriers only 18 ; and/or are designed to raise awareness and educate patients, providers, and/or communities. 12,[19][20][21][22] To our knowledge, existing initiatives do not provide tools that enable different types of trial sites to evaluate their programs, policies, and procedures for equity, diversity, and inclusion (EDI) and/or assess their performance in EDI participation metrics collection, evaluation, and monitoring along the continuum of clinical trial screening, offering, and enrolling patients on trials. ASCO underrepresented racial/ethnic populations and enhancing diversity among clinical trial participants.…”

Integrating special and underserved populations in translational research: Environmental scan of adaptive capacity and preparedness of Clinical and Translational Science Award (CTSA) program hubs

“…The CTSA program has witnessed, studied, and experienced the hurdles and structural constraints when it comes to recruiting [5], engaging [6], collaborating, and facilitating access for SUPs in translational research [7,8]. Accordingly, the CTSA network has a history of focused efforts to address constraints that result in health disparities across the lifespan [9].…”

Place Matters: Closing the Gap on Rural Primary Care Quality Improvement Capacity—the Healthy Hearts Northwest Study

“…[4][5][6][7][8] When combined with primary care workforce shortages in rural areas, these factors contribute to the designation of rural residents as a priority population. 9 Improving the quality of health care in rural settings has been challenging. 10 Rural primary care practices have difficulties reporting quality measures and implementing quality improvement (QI) initiatives.…”