Rapid Response to Drive COVID-19 Research in a Learning Health Care System: Rationale and Design of the Houston Methodist COVID-19 Surveillance and Outcomes Registry (CURATOR)

Abstract

Background The COVID-19 pandemic has exacerbated the challenges of meaningful health care digitization. The need for rapid yet validated decision-making requires robust data infrastructure. Organizations with a focus on learning health care (LHC) systems tend to adapt better to rapidly evolving data needs. Few studies have demonstrated a successful implementation of data digitization principles in an LHC context across health care systems during the COVID-19 pandemic. Objective We share our experience and provide a framework for assembling and organizing multidisciplinary resources, structuring and regulating research needs, and developing a single source of truth (SSoT) for COVID-19 research by applying fundamental principles of health care digitization, in the context of LHC systems across a complex health care organization. Methods Houston Methodist (HM) comprises eight tertiary care hospitals and an expansive primary care network across Greater Houston, Texas. During the early phase of the pandemic, institutional leadership envisioned the need to streamline COVID-19 research and established the retrospective research task force (RRTF). We describe an account of the structure, functioning, and productivity of the RRTF. We further elucidate the technical and structural details of a comprehensive data repository—the HM COVID-19 Surveillance and Outcomes Registry (CURATOR). We particularly highlight how CURATOR conforms to standard health care digitization principles in the LHC context. Results The HM COVID-19 RRTF comprises expertise in epidemiology, health systems, clinical domains, data sciences, information technology, and research regulation. The RRTF initially convened in March 2020 to prioritize and streamline COVID-19 observational research; to date, it has reviewed over 60 protocols and made recommendations to the institutional review board (IRB). The RRTF also established the charter for CURATOR, which in itself was IRB-approved in April 2020. CURATOR is a relational structured query language database that is directly populated with data from electronic health records, via largely automated extract, transform, and load procedures. The CURATOR design enables longitudinal tracking of COVID-19 cases and controls before and after COVID-19 testing. CURATOR has been set up following the SSoT principle and is harmonized across other COVID-19 data sources. CURATOR eliminates data silos by leveraging unique and disparate big data sources for COVID-19 research and provides a platform to capitalize on institutional investment in cloud computing. It currently hosts deeply phenotyped sociodemographic, clinical, and outcomes data of approximately 200,000 individuals tested for COVID-19. It supports more than 30 IRB-approved protocols across several clinical domains and has generated numerous publications from its core and associated data sources. Conclusions A data-driven decision-making strategy is paramount to the success of health care organizations. Investment in cross-disciplinary expertise, health care technology, and leadership commitment are key ingredients to foster an LHC system. Such systems can mitigate the effects of ongoing and future health care catastrophes by providing timely and validated decision support.

SARS-CoV-2 Susceptibility and COVID-19 Mortality Among Older Adults With Cognitive Impairment: Cross-Sectional Analysis From Hospital Records in a Diverse US Metropolitan Area

“…Our data demonstrate a strong and independent association between higher SARS-CoV-2 infection susceptibility and preexisting cognitive impairment in a carefully balanced and matched cohort across several important sociodemographic and comorbidity covariates. This study leveraged a robust patient registry (CURATOR) (11) and is especially significant for the inclusion of a broad range of clinical and community level factors. In the matched sample, cognitively impaired individuals were 51% more likely to contract SARS-CoV-2 infection compared to those without a prior history of cognitive impairment.…”

“…Following the "strengthening the reporting of observational studies in epidemiology" (STROBE) guidelines, we conducted a cross-sectional secondary data analysis from our Institutional Review Board (IRB) approved (PRO00025445) COVID-19 Surveillance and Outcomes Registry (CURATOR). The detailed rationale and design of CURATOR has been previously reported (11). Briefly, the CURATOR is a validated big-data repository for all individuals who underwent a polymerase chain reaction (PCR) test (regardless of symptom presentation or test result) for presence of SARS-CoV-2 RNA in nasopharyngeal specimens across HM.…”

“…Similar to the tested cohort, adequate balance across all prehospital and hospitalization covariates was achieved (Figure 3). The PS balanced covariates for include age (mean [SD]: 80.1 [10.6] [5][6][7][8][9][10][11]), admission to intensive care (38.6 vs. 40.9%), and use of mechanical ventilation (17.5 vs. 20.1%; Table 2). Prior to matching, the mortality rate in the hospitalized cohort of patients without cognitive impairment was 8.7%; however, the mortality rate in the matched sample was 20.1% (compared with 19.4% among patients with cognitive impairment; Table 2).…”

Risk factors for severity of COVID-19 in hospital patients age 18–29 years

“…Demographic, geographic, and clinical data was retrieved from the Houston Methodist COVID-19 Surveillance and Outcomes Registry (CURATOR), a COVID-19-specific electronic health records (EHR) data mining and collection project. Detailed methods of the CURATOR project have been previously described [5,13]. Demographic information, including age, patient-reported race and ethnicity, gender, parent hospital, insurance information and home address location were collected from the electronic medical record (EMR).…”

Multidisciplinary Effort and Integrative Preparedness: A Lesson for the Foreseen Multivariate COVID-19 Pandemic Flare-Up

“…92,96 Policy makers together with authorities can prepare different materials and approve regulatory and market issues of vaccines and pharmacovigilance in support of creating a research atmosphere. 92,97 These authorities, with the help of partner organizations upon a call, can help the effort in different ways. Among these are designation of patient care referral facilities, re-mapping and reorganizing the referral links and health facilities.…”