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Using patient lists to add value to integrated data repositories.

Ted D Wade¹, Pearlanne T Zelarney¹, Richard C Hum¹

¹Division of Biostatistics and Bioinformatics, National Jewish Health, Denver, CO 80206, USA.

Journal of Biomedical Informatics

|February 19, 2014

Summary

This summary is machine-generated.

Patient lists enable precise data querying within integrated data repositories (IDRs). This feature allows researchers to focus on specific patient cohorts for various clinical and research applications, improving data management.

Keywords:

Bio-repository Honest broker Integrated data repository Meaningful use Patient registry i2b2

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Area of Science:

Health Informatics
Data Management
Clinical Research Informatics

Background:

Integrated Data Repositories (IDRs) are crucial for managing patient data.
Current IDR functionalities may lack specific tools for defining and querying project-specific patient cohorts.
Efficiently managing and analyzing subsets of patients is essential for research and clinical practice.

Purpose of the Study:

To introduce and describe the implementation of patient lists within Integrated Data Repositories (IDRs).
To demonstrate the utility of patient lists for various use cases in clinical research and data management.
To outline the technical capabilities required for effective patient list functionality in IDRs.

Main Methods:

Developed and implemented a custom Integrated Data Repository (IDR) featuring patient list capabilities.
Defined essential functionalities for patient lists, including identifier capture, permanent internal identifiers, queryable attributes, data merging, and access control.
Reviewed existing IDR platforms, such as i2b2, for their capacity to support or be modified for patient list features.

Main Results:

Successfully implemented patient lists in a custom IDR, enabling project-specific patient cohort definition and querying.
Identified key technical requirements for robust patient list implementation, including data capture, mapping, attribute addition, merging, and access control.
Found that existing platforms like i2b2 could potentially be adapted to incorporate similar low-overhead patient list functionalities.

Conclusions:

Patient lists offer a valuable mechanism for enhancing data management and research capabilities within IDRs.
The described implementation and required capabilities provide a blueprint for developing or enhancing patient cohort management in IDRs.
Further adaptation of existing IDR platforms could broaden the accessibility and utility of patient list features for the research community.