Development of a large urban longitudinal HIV clinical cohort using a web-based platform to merge electronically and manually abstracted data from disparate medical record systems: technical challenges and innovative solutions

Greenberg, Alan E.; Hays, Harlen; Castel, Amanda D.; Subramanian, Thilakavathy; Happ, Lindsey Powers; Jaurretche, Maria; Binkley, J. Samuel; Kalmin, Mariah M; Wood, Kathy; Hart, Rachel

doi:10.1093/jamia/ocv176

Cited by 65 publications

(45 citation statements)

References 26 publications

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“…Details of the DC Cohort study design have been described previously. 30 Briefly, participants’ clinical data were abstracted from their electronic medical records (EMR) and entered in a web-based data entry system called Discovere® (Cerner Corporation, Kansas City, MO). DC Cohort data are linked semi-annually to the DC Department of Health (DOH)’s HIV/AIDS, Hepatitis, STD and TB Administration surveillance databases.…”

Section: Methodsmentioning

confidence: 99%

“…DC Cohort data are linked semi-annually to the DC Department of Health (DOH)’s HIV/AIDS, Hepatitis, STD and TB Administration surveillance databases. 30 Post-linked data include HIV-related laboratory tests (i.e., CD4 count and viral load (VL) test results) that participants received from both DC Cohort and non-DC Cohort providers, improving our ascertainment of RIC and VS. At the time of this analysis, 13 DC Cohort sites were enrolling participants: eight were hospital-based and five were community-based clinics. Approximately 95% were treatment-experienced.…”

Section: Methodsmentioning

confidence: 99%

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Identifying Spatial Variation Along the HIV Care Continuum: The Role of Distance to Care on Retention and Viral Suppression

et al. 2018

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Distance to HIV care may be associated with retention in care (RIC) and viral suppression (VS). RIC (≥ 2 HIV visits or labs ≥ 90 days apart in 12 months), prescribed antiretroviral therapy (ART), VS (< 200 copies/mL at last visit) and distance to care were estimated among 3623 DC Cohort participants receiving HIV care in 13 outpatient clinics in Washington, DC in 2015. Logistic regression models and geospatial statistics were computed. RIC was 73%; 97% were on ART, among whom 77% had VS. ZIP code-level clusters of low RIC and high VS were found in Northwest DC, and low VS in Southeast DC. Those traveling ≥ 5 miles had 30% lower RIC (adjusted odds ratio (aOR) 0.71, 95% CI 0.58, 0.86) and lower VS (OR 0.70, 95% CI 0.52, 0.94). Geospatial clustering of RIC and VS was observed, and distance may be a barrier to optimal HIV care outcomes.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Identifying Spatial Variation Along the HIV Care Continuum: The Role of Distance to Care on Retention and Viral Suppression

et al. 2018

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“…This analysis was conducted as part of a larger city-wide longitudinal cohort study of HIV-infected persons receiving care in the District of Columbia (DC), which is aimed to describe clinical outcomes and improve the quality of care for patients in Washington, DC, USA [18]. The paediatric Special Immunology Services (SIS) program at the Children's National Health System (CNHS) is 1 of 13 sites participating in the DC cohort.…”

Section: Methodsmentioning

confidence: 99%

Interruptions of antiretroviral therapy in children and adolescents with HIV infection in clinical practice: a retrospective cohort study in the USA

Rakhmanina

Lam

Hern

et al. 2016

Journal of the International AIDS Society

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IntroductionChanges in combination antiretroviral therapy (cART) throughout childhood challenge the continuity of paediatric HIV treatment. This study aimed to evaluate the prevalence of treatment interruption (TI), including lamivudine (3TC) monotherapy, and the relationship of TI to virologic and immunologic parameters in HIV-infected paediatric patients.MethodsNested within a prospective observational study of a city-wide cohort of HIV-infected persons in the District of Columbia, this sub-study collected retrospective data on antiretroviral therapy, enrolment (endpoint) and historic (lifelong) CD4 counts and HIV RNA viral load (VL) of the paediatric cohort. TI was defined as interruption of cART ≥4 consecutive weeks. Data on TI, including 3TC monotherapy TI (MTI), were collected. Descriptive statistics and univariate testing were used to compare children with TI and MTI to children on continuous treatment (CT).ResultsThirty-eight (28%) out of 136 enrolled children (median age=12.9 years) experienced TI, with 14 (37%) of those placed on 3TC MTI. Significantly lower endpoint median CD4 counts (598 cells/mm3 vs. 815 cells/mm3; p=0.003) and CD4% (27.5% vs. 33%; p=0.006) were observed in the TI cohort as compared to the CT cohort. The median endpoint VL in the overall TI cohort was ~4 times higher than among the CT cohort (1427 copies/mL vs. 5581 copies/mL; p<0.0001). After a median TI duration of one year, a majority (n=31; 82%) of patients with TI restarted cART, including 100% of those with total TI and 53% of those on MTI, respectively.ConclusionsIn our study, we observed high frequency of the TI in HIV in paediatric HIV clinical practice. All TIs, including 3TC MTI, were associated with significantly lower endpoint median CD4 counts and higher median VLs, as compared to CT in paediatric patients. The high frequency of TI and associated poor outcomes suggest a need for a better strategy in managing the course of the paediatric and adolescent cART.

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“…Benefits of agile methodologies were first unequivocally established in software-intensive product development, but have now been demonstrated in data warehousing / BI development projects [13, 14] and new product development in general. Given that new registry development is in effect NPD, the proven benefits of agile development methods are likely to translate well to use on new registry development [17]. …”

Section: Introductionmentioning

confidence: 99%

Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data

Kannan¹,

Fish²,

Mutz³

et al. 2017

Methods Inf Med

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Summary Background Creation of a new electronic health record (EHR)-based registry often can be a "one-off" complex endeavor: first developing new EHR data collection and clinical decision support tools, followed by developing registry-specific data extractions from the EHR for analysis. Each development phase typically has its own long development and testing time, leading to a prolonged overall cycle time for delivering one functioning registry with companion reporting into production. The next registry request then starts from scratch. Such an approach will not scale to meet the emerging demand for specialty registries to support population health and value-based care. Objective To determine if the creation of EHR-based specialty registries could be markedly accelerated by employing (a) a finite core set of EHR data collection principles and methods, (b) concurrent engineering of data extraction and data warehouse design using a common dimensional data model for all registries, and (c) agile development methods commonly employed in new product development. Methods We adopted as guiding principles to (a) capture data as a by product of care of the patient, (b) reinforce optimal EHR use by clinicians, (c) employ a finite but robust set of EHR data capture tool types, and (d) leverage our existing technology toolkit. Registries were defined by a shared condition (recorded on the Problem List) or a shared exposure to a procedure (recorded on the Surgical History) or to a medication (recorded on the Medication List). Any EHR fields needed—either to determine registry membership or to calculate a registry-associated clinical quality measure (CQM)—were included in the enterprise data warehouse (EDW) shared dimensional data model. Extract-transform-load (ETL) code was written to pull data at defined “grains” from the EHR into the EDW model. All calculated CQM values were stored in a single Fact table in the EDW crossing all registries. Registry-specific dashboards were created in the EHR to display both (a) real-time patient lists of registry patients and (b) EDW-generated CQM data. Agile project management methods were employed, including co-development, lightweight requirements documentation with User Stories and acceptance criteria, and time-boxed iterative development of EHR features in 2-week “sprints” for rapid-cycle feedback and refinement. Results Using this approach, in calendar year 2015 we developed a total of 43 specialty chronic disease registries, with 111 new EHR data collection and clinical decision support tools, 163 new clinical quality measures, and 30 clinic-specific dashboards reporting on both real-time patient care gaps and summarized and vetted CQM measure performance trends. Conclusions This study suggests concurrent design of EHR data collection tools and reporting can quickly yield useful EHR structured data for chronic disease registries, and bodes well for efforts to migrate away from manual abstraction. This work also supports the view that in new EHR-based registry development,...

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Development of a large urban longitudinal HIV clinical cohort using a web-based platform to merge electronically and manually abstracted data from disparate medical record systems: technical challenges and innovative solutions

Abstract: Our experiences may have practical implications for researchers who seek to merge data from diverse clinical databases, and are applicable to the study of health-related issues beyond HIV.

Cited by 65 publications

References 26 publications

Identifying Spatial Variation Along the HIV Care Continuum: The Role of Distance to Care on Retention and Viral Suppression

Identifying Spatial Variation Along the HIV Care Continuum: The Role of Distance to Care on Retention and Viral Suppression

Interruptions of antiretroviral therapy in children and adolescents with HIV infection in clinical practice: a retrospective cohort study in the USA

Rapid Development of Specialty Population Registries and Quality Measures from Electronic Health Record Data

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