Postcode Lottery in Healthcare? Findings from the Scottish National Comprehensive Geriatric Assessment in Secondary Care Audit 2019

Comprehensive Geriatric Assessment (CGA) is provided differently across Scotland. The Scottish Care of Older People (SCoOP) CGA Audit was a national audit conducted in 2019 to assess this variation in acute hospitals. Two versions of audit questionnaires about the provision of CGA were developed (one each for larger hospitals and remote/rural areas) and piloted. The questionnaires were sent to representatives from all hospitals in Scotland using the REDCap (Research Electronic Data Capture) system. The survey asked each service to provide information on CGA service delivery at the ‘front door’. The questionnaire was open for completion between February and July 2019. Of the 28 Scottish hospitals which receive acute admissions, we received information from 26 (92.9% response rate). Reporting sites included seven hospitals from remote and rural locations in the Scottish Highlands and Islands. Significant variations were observed across participating sites for all key aspects studied: dedicated frailty units, routes of admission, staffing, liaison with other services and rehabilitation provision. The 2019 SCoOP CGA audit highlights areas of CGA services that could be improved and variation in specialist CGA service access, structure and staffing at the front door across Scotland. Whether this variation has an impact on the outcomes of older people requires further evaluation.

Validation of a Novel Smartphone-Based Electronic Data Capture System Following Surgical Fixation of Distal Radial Fractures

Background: Large prospective institutional data provide the opportunity to conduct level II and III studies using robust methodologies and adequately powered sample-sizes, while circumventing limitations of retrospective databases. We aimed to validate a prospective data collection tool, the Orthopaedic Minimal Data Set Episode of Care (OME), implemented at a tertiary North American health care system for distal radial fracture (DRF) open reduction and internal fixation (ORIF). Methods: The first 100 DRF ORIFs performed after OME inception (February 2015) were selected for this validation study. A blinded review of the operative notes and charts was performed, and extracted data of 75 perioperative DRF ORIF procedure variables were compared with OME collected data for agreement. Outcomes included completion rates and agreement measures in OME versus electronic medical record (EMR)-based control datasets. Data counts were evaluated using raw percentages and McNemar tests. Cohen (κ) and concordance correlation coefficient analyzed categorical and numerical variable agreement, respectively. Results: Overall, OME demonstrated superior completion and agreement parameters versus EMR-based retrospective review. Nine data points (12.0%) demonstrated significantly higher completion rates within the OME dataset ( P < .05, each), and 88% (66/75) of captured variables demonstrated similar completion rates. Up to 80.0% (60/75) of variables either demonstrated an agreement proportion of ≥0.90 or were solely reported in the OME. Of 33 variables eligible for agreement analyses, 36.4% (12/33) demonstrated almost perfect agreement (κ > 0.80), and 63.6% (21/33) exhibited almost perfect or substantial agreement (κ > 0.60). Conclusions: The OME is a valid and accurate prospective data collection tool for DRF ORIF that is reliably able to match or supersede traditional retrospective chart review. Future investigations could use this tool for large-scale analyses investigating peri/intraoperative DRF ORIF variables.

Automated provision of clinical routine data for a complex clinical follow-up study: A data warehouse solution

A deep integration of routine care and research remains challenging in many respects. We aimed to show the feasibility of an automated transformation and transfer process feeding deeply structured data with a high level of granularity collected for a clinical prospective cohort study from our hospital information system to the study’s electronic data capture system, while accounting for study-specific data and visits. We developed a system integrating all necessary software and organizational processes then used in the study. The process and key system components are described together with descriptive statistics to show its feasibility in general and to identify individual challenges in particular. Data of 2051 patients enrolled between 2014 and 2020 was transferred. We were able to automate the transfer of approximately 11 million individual data values, representing 95% of all entered study data. These were recorded in n = 314 variables (28% of all variables), with some variables being used multiple times for follow-up visits. Our validation approach allowed for constant good data quality over the course of the study. In conclusion, the automated transfer of multi-dimensional routine medical data from HIS to study databases using specific study data and visit structures is complex, yet viable.

125. Antimicrobial Stewardship Hospital Activities to Promote Antibiotic Awareness Week 2019, Chicago, IL

Background U.S. Antibiotic Awareness Week (USAAW) is an annual campaign to increase knowledge of antimicrobial resistance (AMR) threats and the importance of appropriate antibiotic use. USAAW will be observed November 18-24, 2021 in cadence with World Antimicrobial Awareness Week. Methods In October 2019, the Chicago Department of Public Health (CDPH) surveyed 25 Chicago acute care hospital (ACH) antimicrobial stewardship programs (ASPs) via REDCap, an electronic data capture system, to assess their planned activities for USAAW in November 2019. Survey results from 14 (56%) respondent ACHs were collated and disseminated to all 25 ACHs prior to USAAW. Results ACH ASP survey responses were categorized by ACH size: smaller hospitals (SH) &lt; 350 beds (n=7) and larger hospitals (LH) &gt; 350 beds (n=7) and displayed in the Table. Nine respondents were Infectious Disease (ID) Pharmacists, 3 were ID Physicians, 1 was an Administrator and 1 was an Infection Prevention Nurse. Among SHs, the ASP was funded for an ID Pharmacist salaried position (FTE) &lt; 0.5 at 4 ACHs, 0.5 in 2, and 1 FTE at 1 ACH. LHs reported ID Pharmacist funding ranging from &lt; 0.5 – 2.5 FTE, with the majority with 1 FTE at 3 LHs. All ACHs reported 0.5 FTE or less ID Physician support for their ASPs. Eleven (79%) of respondent ACHs did not report an annual budget for ASP activities. Ten (71%) ACHs disagreed or strongly disagreed that funding was adequate in the outpatient setting compared to inpatient both for adult and pediatric ASP services. Types of planned activities for USAAW included social media posts, provider education, digital displays, and/or go-live with a new antimicrobial policy. Top three barriers to ASP advancements were financial considerations (n=9), competing responsibilities for ASP leads (n=7), and tied for third was personnel shortages (n=6) and other clinical initiatives with higher priority (n=6). Conclusion Public Health Departments can facilitate assessment of ACH ASPs within their jurisdiction to identify ways to advance the ASP agenda and combat AMR. A variety of strategies were used by Chicago ACHs to promote ASP initiatives during USAAW. Challenges continue with inadequate funding, especially in outpatient settings. Disclosures All Authors: No reported disclosures

Electronic data capture system (REDCap) for healthcare research and training in a resource-constrained environment: Adoption and growth at a South African institution (Preprint)

BACKGROUND Electronic data capture (EDC) in academic healthcare organizations provides an opportunity for the management, aggregation and secondary use of research and clinical data. It is especially important in resource constrained environments such as the South African public healthcare sector, where paper records are still the main form of clinical record-keeping. OBJECTIVE We describe the strategies followed by the Faculty of Health Sciences, University of the Witwatersrand (Wits FHS), during the period of 2013-2021 to overcome resistance and encourage adoption of the Research Electronic Data Capture (REDCap) system by academic and clinical staff. REDCap has found wide use in varying domains including clinical studies, research projects and administrative, financial and human resource applications. Given REDCap’s global footprint in more than 5 000 institutions worldwide and potential for future growth, the strategies followed by the Wits FHS to support users and encourage adoption may be of interest to others utilizing the system, particularly in resource-constrained setting. METHODS The strategies to support users and encourage adoption included: 1) Top-down organizational support; 2) Secure and reliable hosting infrastructure and systems administration 3) An enabling and accessible REDCap support team 4) Regular hands-on training workshops covering data collection instrument design and use of REDCap; 5) Annual local symposia to promote networking and awareness of all the latest software features and best practices for using them 6) Participation in REDCap Consortium activities; and 7) Regular and ongoing mentorship from members of Vanderbilt University Medical Center. RESULTS During the period 2013-2021, utilization of the REDCap EDC system by individuals in the Wits FHS increased from 129 active user accounts in 2013 to 3 447 active user accounts respectively in 2021. The number of REDCap projects numbered 149 in 2013 and increased to 12 865 in 2021. REDCap at Wits also supported various publications and research outputs including journal articles and postgraduate monographs. As of 2020, a total of 233 journal articles and 87 postgraduate monographs acknowledged the use of the Wits REDCap system. CONCLUSIONS By providing reliable infrastructure and accessible support resources, we were able to successfully implement and grow the REDCap electronic data capture system at the Wits FHS and its associated academic medical centers. We believe that the increase in use of REDCap was driven by offering a dependable, secure service with a strong end-user training and support model. This model may be applied by other academic and healthcare organizations in resource-constrained environments planning to implement EDC technology.

The de novo FAIRification process of a registry for vascular anomalies

Background Patient data registries that are FAIR—Findable, Accessible, Interoperable, and Reusable for humans and computers—facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions can be asked across FAIR rare disease registries and other FAIR resources without physically combining the data. Further, FAIR implies well-defined, transparent access conditions, which supports making sensitive data as open as possible and as closed as necessary. Results We successfully developed and implemented a process of making a rare disease registry for vascular anomalies FAIR from its conception—de novo. Here, we describe the five phases of this process in detail: (i) pre-FAIRification, (ii) facilitating FAIRification, (iii) data collection, (iv) generating FAIR data in real-time, and (v) using FAIR data. This includes the creation of an electronic case report form and a semantic data model of the elements to be collected (in this case: the “Set of Common Data Elements for Rare Disease Registration” released by the European Commission), and the technical implementation of automatic, real-time data FAIRification in an Electronic Data Capture system. Further, we describe how we contribute to the four facets of FAIR, and how our FAIRification process can be reused by other registries. Conclusions In conclusion, a detailed de novo FAIRification process of a registry for vascular anomalies is described. To a large extent, the process may be reused by other rare disease registries, and we envision this work to be a substantial contribution to an ecosystem of FAIR rare disease resources.

Assessment of the Chad guinea worm surveillance information system: A pivotal foundation for eradication

Background In the absence of a vaccine or pharmacological treatment, prevention and control of Guinea worm disease is dependent on timely identification and containment of cases to interrupt transmission. The Chad Guinea Worm Eradication Program (CGWEP) surveillance system detects and monitors Guinea worm disease in both humans and animals. Although Guinea worm cases in humans has declined, the discovery of canine infections in dogs in Chad has posed a significant challenge to eradication efforts. A foundational information system that supports the surveillance activities with modern data management practices is needed to support continued program efficacy. Methods We sought to assess the current CGWEP surveillance and information system to identify gaps and redundancies and propose system improvements. We reviewed documentation, consulted with subject matter experts and stakeholders, inventoried datasets to map data elements and information flow, and mapped data management processes. We used the Information Value Cycle (IVC) and Data-Information System-Context (DISC) frameworks to help understand the information generated and identify gaps. Results Findings from this study identified areas for improvement, including the need for consolidation of forms that capture the same demographic variables, which could be accomplished with an electronic data capture system. Further, the mental models (conceptual frameworks) IVC and DISC highlighted the need for more detailed, standardized workflows specifically related to information management. Conclusions Based on these findings, we proposed a four-phased roadmap for centralizing data systems and transitioning to an electronic data capture system. These included: development of a data governance plan, transition to electronic data entry and centralized data storage, transition to a relational database, and cloud-based integration. The method and outcome of this assessment could be used by other neglected tropical disease programs looking to transition to modern electronic data capture systems.

Bridging the gaps between tertiary and community care networks: Results from a southern California survey research analysis.

1538 Background: Although many tertiary cancer centers offer access to myriad research protocols, the majority of patients nevertheless receive treatment at community practices. We sought to examine the barriers that hamper clinical collaboration between tertiary and community practice environments in Southern California. Methods: A 31-item survey was distributed to community and tertiary oncologists using REDCap, a browser-based electronic data capture system. Survey questions assessed the following attributes: demographics and features of clinical practice, referral patterns, availability and knowledge pertaining to clinical trials, strategies for knowledge acquisition, and integration of community and tertiary practices. Results: The survey was distributed to 98 oncologists, 85 (87%) of whom completed it in full. The most common institutional affiliations were City of Hope Comprehensive Cancer Center (58%), University of California, Los Angeles (10%), and Cedars Sinai Medical Center (8%). In total, 52 (61%) respondents were community practitioners and 33 (38%) were tertiary oncologists. A majority (56%) of community oncologists defined themselves as general oncologists whereas almost all (97%) tertiary oncologists reported a subspecialty. Clinical trial availability was the most common reason for pt referrals to tertiary centers (73%). The most frequent barrier to tertiary referral was financial considerations (59%). Clinical trials were offered by 97% of tertiary practitioners as compared to 67% of community oncologists (p = 0.001). Of note, while a majority of tertiary center providers (52%) described the primary value of community practices to be a source of referrals for clinical trials, most community oncologists (82%) reported only a minimal-to-moderate understanding of clinical trials available at regional tertiary centers. Conclusions: Community oncologists refer patients to tertiary centers primarily with the intent of clinical trial enrollment; however, significant gaps exist in their knowledge of trial availability. Our results identify the need for enhanced communication and collaboration between community and tertiary providers to expand patients’ access to clinical trials.