Blueprint for aligned data exchange for research and public health

Michaels, Maria; Syed, Sameemuddin; Lober, William B.

doi:10.1093/jamia/ocab210

Cited by 8 publications

(4 citation statements)

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“…Different architectures can be selected for different application scenarios. In the case of apps with specific functions, such as statistics and analysis, SMART on FHIR would be a more efficient option [76][77][78][79][80][81][82][83][84][85]. In the case of apps with customized functions, such as supporting microservice architecture or blockchain architecture, customized architecture apps would be a more suitable option [86][87][88][89][90][91][92][93][94].…”

Section: Data Integrationmentioning

confidence: 99%

“…Technologies app: apps with specific functions, such as statistics and analysis. Suraj et al [76], 2022; Michaels et al [77], 2021; Curran et al [78], 2020; Thayer et al [79], 2021; Karhade et al [80], 2021; Wesley et al [81], 2021; Burkhardt et al [82], 2021; Hoffman et al [83], 2017; Stoldt and Weber [84], 2020; Stoldt and Weber [85], 2021…”

Section: Substitutable Medical Applications and Reusablementioning

confidence: 99%

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Designing Interoperable Health Care Services Based on Fast Healthcare Interoperability Resources: Literature Review

Nan¹,

Xu²

2023

JMIR Med Inform

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Background With the advent of the digital economy and the aging population, the demand for diversified health care services and innovative care delivery models has been overwhelming. This trend has accelerated the urgency to implement effective and efficient data exchange and service interoperability, which underpins coordinated care services among tiered health care institutions, improves the quality of oversight of regulators, and provides vast and comprehensive data collection to support clinical medicine and health economics research, thus improving the overall service quality and patient satisfaction. To meet this demand and facilitate the interoperability of IT systems of stakeholders, after years of preparation, Health Level 7 formally introduced, in 2014, the Fast Healthcare Interoperability Resources (FHIR) standard. It has since continued to evolve. FHIR depends on the Implementation Guide (IG) to ensure feasibility and consistency while developing an interoperable health care service. The IG defines rules with associated documentation on how FHIR resources are used to tackle a particular problem. However, a gap remains between IGs and the process of building actual services because IGs are rules without specifying concrete methods, procedures, or tools. Thus, stakeholders may feel it nontrivial to participate in the ecosystem, giving rise to the need for a more actionable practice guideline (PG) for promoting FHIR’s fast adoption. Objective This study aimed to propose a general FHIR PG to facilitate stakeholders in the health care ecosystem to understand FHIR and quickly develop interoperable health care services. Methods We selected a collection of FHIR-related papers about the latest studies or use cases on designing and building FHIR-based interoperable health care services and tagged each use case as belonging to 1 of the 3 dominant innovation feature groups that are also associated with practice stages, that is, data standardization, data management, and data integration. Next, we reviewed each group’s detailed process and key techniques to build respective care services and collate a complete FHIR PG. Finally, as an example, we arbitrarily selected a use case outside the scope of the reviewed papers and mapped it back to the FHIR PG to demonstrate the effectiveness and generalizability of the PG. Results The FHIR PG includes 2 core elements: one is a practice design that defines the responsibilities of stakeholders and outlines the complete procedure from data to services, and the other is a development architecture for practice design, which lists the available tools for each practice step and provides direct and actionable recommendations. Conclusions The FHIR PG can bridge the gap between IGs and the process of building actual services by proposing actionable methods, procedures, and tools. It assists stakeholders in identifying participants’ roles, managing the scope of responsibilities, and developing relevant modules, thus helping promote FHIR-based interoperable health care services.

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Section: Data Integrationmentioning

confidence: 99%

Section: Substitutable Medical Applications and Reusablementioning

confidence: 99%

Designing Interoperable Health Care Services Based on Fast Healthcare Interoperability Resources: Literature Review

Nan¹,

Xu²

2023

JMIR Med Inform

View full text Add to dashboard Cite

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“…Following these principles, Hospital Universitario 12 de Octubre from Madrid, Spain (H12O) designed, implemented, and applied an innovative methodology for obtaining EHR-derived datasets for research, which allows incorporating the semantics of health data into the EHR reuse process, 5 being considered this process an international reference. 6 In this way, the data generated during health care were reused in multiple additional purposes in an agile manner, and adapted to changes in data specifications, while maintaining their original meaning and acceptable quality. 7 In the context of coronavirus disease 2019 (COVID- 19), this line of work has allowed H12O to participate in an efficient and sustainable way, during the most critical moments of the pandemic, in several real world data (RWD) initiatives, 8 such as the 4CE Consortium, 9 the EHDEN Consortium, 10 and Tri-NetX.…”

Section: Introductionmentioning

confidence: 99%

TransformEHRs: a flexible methodology for building transparent ETL processes for EHR reuse

et al. 2022

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Background During the COVID-19 pandemic, several methodologies were designed for obtaining electronic health record (EHR)-derived datasets for research. These processes are often based on black boxes, on which clinical researchers are unaware of how the data were recorded, extracted, and transformed. In order to solve this, it is essential that extract, transform, and load (ETL) processes are based on transparent, homogeneous, and formal methodologies, making them understandable, reproducible, and auditable. Objectives This study aims to design and implement a methodology, according with FAIR Principles, for building ETL processes (focused on data extraction, selection, and transformation) for EHR reuse in a transparent and flexible manner, applicable to any clinical condition and health care organization. Methods The proposed methodology comprises four stages: (1) analysis of secondary use models and identification of data operations, based on internationally used clinical repositories, case report forms, and aggregated datasets; (2) modeling and formalization of data operations, through the paradigm of the Detailed Clinical Models; (3) agnostic development of data operations, selecting SQL and R as programming languages; and (4) automation of the ETL instantiation, building a formal configuration file with XML. Results First, four international projects were analyzed to identify 17 operations, necessary to obtain datasets according to the specifications of these projects from the EHR. With this, each of the data operations was formalized, using the ISO 13606 reference model, specifying the valid data types as arguments, inputs and outputs, and their cardinality. Then, an agnostic catalog of data was developed through data-oriented programming languages previously selected. Finally, an automated ETL instantiation process was built from an ETL configuration file formally defined. Conclusions This study has provided a transparent and flexible solution to the difficulty of making the processes for obtaining EHR-derived data for secondary use understandable, auditable, and reproducible. Moreover, the abstraction carried out in this study means that any previous EHR reuse methodology can incorporate these results into them.

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“…Reducing disparities in new viral hepatitis infections and along the HCV cascade is an objective of the Viral Hepatitis National Strategic Plan for the United States. 2 Health departments can merge the longitudinal HCV database with internal data sources, such as HIV or cancer registries, or external data sources, such as electronic case reporting 4,5 or Homeless Management Information Systems, 6 to incorporate demographic and risk factor information such as race, ethnicity, and housing status. Data sources for certain populations, such as state departments of corrections, Medicaid, or HIV surveillance systems, can be used to further describe HCV elimination progress in subpopulations.…”

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confidence: 99%

Development of a Standardized, Laboratory Result–Based Hepatitis C Virus Clearance Cascade for Public Health Jurisdictions

et al. 2023

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During 2013-2016, an estimated 2.4 million people in the United States were living with hepatitis C virus (HCV) infection. 1 With the availability of curative treatment since 2013, the United States has established a goal of eliminating hepatitis C as a public health threat by 2030. 2 HCV clearance cascades (hereinafter, HCV cascades) are an important tool to track progress toward elimination, across jurisdictions and at a national level, and to identify disparities in access to testing and treatment. HCV cascades are a sequence of steps that follow progression from testing and treatment to clearance and subsequent infection and can be used to inform public health interventions to facilitate progression along the cascade.Many HCV cascades are developed in a single or regional health system in which both treatment and laboratory data are available. However, an important goal for health departments is to develop population-level cascades that capture data on HCV infection status for all people living in a jurisdiction who might seek care across various health settings. In the absence of treatment information, which is not always readily available in health department surveillance systems, HCV laboratory results can be used to develop HCV cascades. Here, we describe a standardized, laboratory resultbased HCV cascade developed by the Centers for Disease Control and Prevention (CDC) as a guide for health departments (Figure 1, Supplemental Material).

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Blueprint for aligned data exchange for research and public health

Cited by 8 publications

References 1 publication

Designing Interoperable Health Care Services Based on Fast Healthcare Interoperability Resources: Literature Review

Designing Interoperable Health Care Services Based on Fast Healthcare Interoperability Resources: Literature Review

TransformEHRs: a flexible methodology for building transparent ETL processes for EHR reuse

Development of a Standardized, Laboratory Result–Based Hepatitis C Virus Clearance Cascade for Public Health Jurisdictions

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