A Mixed Methods Exploration of Diversity, Equity, and Inclusion (DEI) Care Processes Within a Pediatric IBD Learning Health Network

Background: ImproveCareNow (ICN) is an international learning health network (LHN) with 107 pediatric inflammatory bowel disease (IBD) centers focused on transforming the care of pediatric IBD patients through the creation of a unique, multi-disciplinary, multi-stakeholder collaborative. A key goal in ICN’s current strategic plan focuses on addressing the needs of underserved pediatric IBD patients. ICN’s Diversity, Equity, and Inclusion (DEI) committee utilizes quality improvement (QI) methodology to evaluate and improve equitable care processes for underserved pediatric IBD patients. Following the creation of a charter and key driver diagram, the DEI committee undertook an initial quantitative and qualitative exploratory analysis of current DEI-focused care within ICN. Methods: Utilizing ICN’s network-wide registry database that houses data across centers, we examined the completeness of DEI-related patient demographic data. We focused on race, ethnicity, gender, and type of insurance as DEI-related surrogate metrics, and quantified the percentage of patients in the Registry missing data in each category. A subsequent cross-sectional survey assessed whether the following were applicable for ICN centers: 1) a center level established/developing DEI team; 2) DEI-focused initiatives; 3) barriers for centers without established/developing DEI programs. The survey also included an open-ended comment section. Centers were then categorized (high, medium, or low achieving) based on the degree of DEI-related data completion, survey responses, and content analysis of comment section responses by DEI committee consensus. Centers categorized as “high-achieving” centers were defined as having 1) high registry data completion on DEI-relevant variables, 2) initial/ongoing DEI activities, and 3) a substantial non-White patient population (>10%) per registry data. High-achieving centers were selected for in-depth, semi-structured qualitative interviews using a guide developed by the DEI committee. Results: Over half (52%, n=56) of ICN centers responded to the survey. Of the centers who participated in the survey, 39% (n=22) had “medium to high” achieving DEI-related demographic data collection rates (defined as < 20% missing data). The majority of centers (59%, n=33) reported an established or developing DEI program either at the center level, GI division level, or both. Most centers (55%, n=31) endorsed working on DEI-related projects, but the majority of centers (63%, n=35) also cited specific barriers to initiating DEI work. Of the 56 centers that responded, 3 centers categorized as “high-achieving” centers underwent semi-structured qualitative interviewing. Qualitative analysis of the semi-structured interviews (n=3) revealed four qualitative themes (having a DEI “champion”, dedicated workflow processes, community engagement, types of support) that fostered DEI-focused efforts, including DEI-related registry data collection. Conclusions: This work highlights current disparities in collecting and reporting DEI-related demographic data in ICN’s data registry. It also identifies four qualitative themes recurring in centers categorized as high-achieving with respect to their DEI work in pediatric IBD care. These findings underscore the need for informed interventions and resources at both the LHN and individual center levels. This exploratory work identified high-potential areas within ICN to address and intervene via QI initiatives to foster and maintain DEI-focused registry data collection and equitable care for underserved pediatric IBD patients.