EHRs Data Harmonization Platform: A Shiny App for Standardizing Electronic Health Records using recodeflow

Keskeiset käsitteet

This paper introduces a new open-source platform designed to simplify and standardize the complex process of extracting, harmonizing, and deriving research-ready variables from disparate Electronic Health Records (EHRs).

Tiivistelmä

This is a research paper that introduces a new software platform called EHRs Data Harmonization Platform.

Bibliographic Information: Aminoleslami, A., Anderson, G.M., & Chicco, D. (2024). EHRs Data Harmonization Platform, an easy-to-use shiny app based on recodeflow for harmonizing and deriving clinical features. arXiv preprint arXiv:2411.10342v1.

Research Objective: The paper aims to address the challenges researchers face when working with EHR data, particularly the lack of standardization and reproducibility in data preparation. The authors propose a solution in the form of a user-friendly platform that streamlines the process of harmonizing and deriving variables from EHRs.

Methodology: The platform leverages the existing R library "recodeflow" and provides a graphical user interface (Shiny app) to facilitate data manipulation. It allows users to import data, create variable details sheets, define recoding rules, and generate curated datasets. The platform also supports the documentation and sharing of derived variables, promoting open science practices.

Key Findings: The authors demonstrate the platform's capabilities through a case study involving COVID-19 research and illustrate its functionality using the publicly available Paquid dataset. They highlight the platform's ability to handle various data formats, manage missing values, and create complex derived variables.

Main Conclusions: The EHRs Data Harmonization Platform offers a practical and efficient solution for researchers working with EHR data. Its user-friendly interface, combined with its ability to standardize and document data transformations, makes it a valuable tool for improving the reproducibility and reliability of research findings.

Significance: The platform has the potential to significantly impact the field of EHR-based research by promoting data standardization, facilitating collaboration, and enhancing the reproducibility of scientific findings.

Limitations and Future Research: The authors acknowledge the platform's current limitations in handling large datasets and plan to address this in future versions. They also aim to develop a Python version of the platform to broaden its accessibility.

Tilastot

The Paquid dataset contains 2,250 observations over 500 subjects and 12 variables.
This dataset has 726 missing values, that is 2.69% of the total data instances.

Lainaukset

Tärkeimmät oivallukset

EHRs Data Harmonization Platform, an easy-to-use shiny app based on recodeflow for harmonizing and deriving clinical features

by Arian Aminol... klo arxiv.org 11-18-2024

https://arxiv.org/pdf/2411.10342.pdf

Syvällisempiä Kysymyksiä

How can the principles of data harmonization employed in this platform be applied to other healthcare data sources beyond EHRs?

The principles of data harmonization employed in the EHRs Data Harmonization Platform, which leverages the recodeflow R library, are highly adaptable and can be extended to a variety of healthcare data sources beyond EHRs. Here's how:

Standardized Variable Definitions: The core principle of using "variable details sheets" and "variable sheets" to establish clear and consistent definitions for variables is universally applicable. Whether dealing with genomic data, medical imaging results, or patient-reported outcomes, defining variables uniformly is crucial. The platform's structure can be easily adapted to accommodate the specific data dictionaries and metadata associated with different data sources.

Flexibility in Data Transformation: The platform's ability to handle both simple recoding tasks (renaming, categorization) and complex derived variables using custom functions makes it versatile. This flexibility is essential when harmonizing data from sources like clinical trials, registries, or sensor data, each with unique structures and variable types.

Open and Reproducible Workflows: The emphasis on documentation and shareability of transformation rules fosters reproducibility and collaboration. This is valuable across healthcare data sources, as it allows researchers to build upon existing harmonization efforts and ensures transparency in data processing steps.
Examples of Application to Other Healthcare Data Sources:

Genomic Data: Harmonizing genomic data from different sequencing platforms or variant calling pipelines often involves standardizing gene names, variant annotations, and data formats. The platform's approach can be used to create a unified genomic dataset.

Medical Imaging: Harmonizing image data might involve standardizing image formats, resolutions, or labeling conventions. The platform can help create derived variables like tumor size or organ volume from raw image data.

Patient-Reported Outcomes: Data from patient surveys or wearable sensors often require harmonization due to variations in questionnaires or device specifications. The platform can standardize responses and derive clinically meaningful metrics.

Could the reliance on a specific programming language (R) limit the platform's accessibility and adoption among researchers unfamiliar with it?

Yes, the reliance on R could potentially limit the platform's accessibility and adoption among researchers unfamiliar with the language. While R is widely used in biostatistics and epidemiology, researchers in other domains might not have the necessary programming skills.
Here are some potential limitations:

Learning Curve: Researchers without prior R experience would need to invest time and effort in learning the basics of the language and the specific syntax used in recodeflow.
Technical Barriers: Setting up the R environment, installing packages, and troubleshooting code errors can be daunting for non-programmers.
Limited Collaboration: Researchers unfamiliar with R might hesitate to adopt the platform or contribute to the shared library of derived variables, hindering collaboration.
Strategies to Mitigate the Limitations:

User-Friendly Interface: The existing Shiny app provides a good starting point, but further development to make it even more intuitive and require minimal R code input would be beneficial.
Comprehensive Documentation and Tutorials: Providing clear and detailed documentation, tutorials, and example use cases tailored to different data sources and research questions would lower the entry barrier.
Developing a Graphical User Interface (GUI): A GUI-based version of the platform that abstracts away the underlying R code would make it accessible to a broader audience.
Exploring Other Languages: Consider developing versions of the platform or its core functionalities in other popular languages like Python, which has a larger user base in some areas of healthcare research.

What are the ethical implications of sharing derived variables and data transformation rules, and how can the platform address potential privacy concerns?

Sharing derived variables and data transformation rules raises important ethical considerations, particularly regarding data privacy and the potential for re-identification:
Potential Privacy Concerns:

Derived Variables as Quasi-Identifiers: Even if derived variables don't directly contain identifiable information, combinations of them could potentially be used to re-identify individuals, especially when linked with other datasets.
Disclosure of Sensitive Information: Transformation rules might inadvertently reveal sensitive information about the underlying data or the research questions being investigated.
Unintended Consequences: Sharing transformation rules without proper context or understanding of the original data could lead to misinterpretations or misuse of the derived variables.
Addressing Privacy Concerns:

Data De-identification: Before sharing derived variables, ensure the underlying data has undergone rigorous de-identification procedures following established guidelines (e.g., HIPAA in the US).
Variable Generalization and Suppression: Generalize derived variables (e.g., age ranges instead of precise ages) or suppress values with small cell counts to minimize re-identification risks.
Access Control and Data Use Agreements: Implement access control mechanisms to the platform and the shared library of derived variables, requiring users to agree to data use agreements that prohibit attempts to re-identify individuals.
Ethical Review and Oversight: Encourage researchers to seek ethical review from their institutions before sharing derived variables or transformation rules, especially when dealing with sensitive data.
Transparency and Documentation: Provide clear documentation about the derivation process, any de-identification steps taken, and potential limitations of the shared variables to ensure responsible use.
By incorporating these measures, the platform can promote data sharing and collaboration while safeguarding patient privacy and upholding ethical research practices.