ABSTRACT
INTRODUCTION: Traditional survey-based surveillance is costly, limited in its ability to distinguish diabetes types and time-consuming, resulting in reporting delays. The Diabetes in Children, Adolescents and Young Adults (DiCAYA) Network seeks to advance diabetes surveillance efforts in youth and young adults through the use of large-volume electronic health record (EHR) data. The network has two primary aims, namely: (1) to refine and validate EHR-based computable phenotype algorithms for accurate identification of type 1 and type 2 diabetes among youth and young adults and (2) to estimate the incidence and prevalence of type 1 and type 2 diabetes among youth and young adults and trends therein. The network aims to augment diabetes surveillance capacity in the USA and assess performance of EHR-based surveillance. This paper describes the DiCAYA Network and how these aims will be achieved. METHODS AND ANALYSIS: The DiCAYA Network is spread across eight geographically diverse US-based centres and a coordinating centre. Three centres conduct diabetes surveillance in youth aged 0-17 years only (component A), three centres conduct surveillance in young adults aged 18-44 years only (component B) and two centres conduct surveillance in components A and B. The network will assess the validity of computable phenotype definitions to determine diabetes status and type based on sensitivity, specificity, positive predictive value and negative predictive value of the phenotypes against the gold standard of manually abstracted medical charts. Prevalence and incidence rates will be presented as unadjusted estimates and as race/ethnicity, sex and age-adjusted estimates using Poisson regression. ETHICS AND DISSEMINATION: The DiCAYA Network is well positioned to advance diabetes surveillance methods. The network will disseminate EHR-based surveillance methodology that can be broadly adopted and will report diabetes prevalence and incidence for key demographic subgroups of youth and young adults in a large set of regions across the USA.
Subject(s)
Diabetes Mellitus, Type 2 , Child , Humans , Adolescent , Young Adult , Diabetes Mellitus, Type 2/epidemiology , Electronic Health Records , Prevalence , Incidence , AlgorithmsABSTRACT
While health care-associated financial burdens among uninsured individuals are well described, few studies have systematically characterized the array of financial and logistical complications faced by insured individuals with low household incomes. In this mixed methods paper, we conducted 6 focus groups with a total of 55 residents and analyzed programmatic administrative records to characterize the specific financial and logistic barriers faced by residents living in public housing in East and Central Harlem, New York City (NYC). Participants included individuals who enrolled in a municipal community health worker (CHW) program designed to close equity gaps in health and social outcomes. Dedicated health advocates (HAs) were explicitly paired with CHWs to provide health insurance and health care navigational assistance. We describe the needs of 150 residents with reported financial barriers to care, as well as the navigational and advocacy strategies taken by HAs to address them. Finally, we outline state-level policy recommendations to help ameliorate the problems experienced by participants. The model of paired CHW-HAs may be helpful in addressing financial barriers for insured populations with low household income and reducing health disparities in other communities.
Subject(s)
Delivery of Health Care , Poverty , Humans , New York City , Focus GroupsABSTRACT
INTRODUCTION: State cancer prevention and control programs rely on public health surveillance data to set objectives to improve cancer prevention and control, plan interventions, and evaluate state-level progress towards achieving those objectives. The goal of this project was to evaluate the validity of using electronic health records (EHRs) based on common data model variables to generate indicators for surveillance of cancer prevention and control for these public health programs. METHODS: Following the methodological guidance from the PRISMA Extension for Scoping Reviews, we conducted a literature scoping review to assess how EHRs are used to inform cancer surveillance. We then developed 26 indicators along the continuum of the cascade of care, including cancer risk factors, immunizations to prevent cancer, cancer screenings, quality of initial care after abnormal screening results, and cancer burden. Indicators were calculated within a sample of patients from the New York City (NYC) INSIGHT Clinical Research Network using common data model EHR data and were weighted to the NYC population using post-stratification. We used prevalence ratios to compare these estimates to estimates from the raw EHR of NYU Langone Health to assess quality of information within INSIGHT, and we compared estimates to results from existing surveillance sources to assess validity. RESULTS: Of the 401 identified articles, 15% had a study purpose related to surveillance. Our indicator comparisons found that INSIGHT EHR-based measures for risk factor indicators were similar to estimates from external sources. In contrast, cancer screening and vaccination indicators were substantially underestimated as compared to estimates from external sources. Cancer screenings and vaccinations were often recorded in sections of the EHR that were not captured by the common data model. INSIGHT estimates for many quality-of-care indicators were higher than those calculated using a raw EHR. CONCLUSION: Common data model EHR data can provide rich information for certain indicators related to the cascade of care but may have substantial biases for others that limit their use in informing surveillance efforts for cancer prevention and control programs.