Domain

Clinical Informatics

Type

Infrastructure/Architecture Overview

Theme

effectiveness

Start Date

7-6-2014 1:15 PM

End Date

7-6-2014 2:45 PM

Structured Abstract

Introduction, Objectives, Purpose

Healthcare research has been revolutionized by increased access to clinical data. However, complex data and research systems are required to support ongoing innovation. 21st century computing and advances in research methods make these systems possible - but research communities are required to efficiently adapt and integrate modern technologies, methods, and population concerns. Transdisciplinary collaborations are essential for tools development to operationalize these research systems. The Integrated Cancer Information and Surveillance System (ICISS) at the University of North Carolina at Chapel Hill represents a system that incorporates ‘big data’, analytic computing, research methods, and institutional knowledge. The environment systematically streamlines activities to support high impact publications on large, population-based, observational data.

Background/Context

ICISS was started 3 years ago focusing on:

Data: ICISS develops and maintains an innovative and comprehensive linked data resource of large, population-based datasets that collectively comprise measures across the cancer care continuum from screening to outcomes.

Systems: A secure computing platform paired with a software development team delivers technical support and innovative research tools. These tools are integrated into daily workflows and include navigating of clinical coding catalogs, cohort discovery, project tracking, and knowledge retention.

Methods: Within the transdisciplinary team, ICISS conducts cutting-edge cancer outcomes research through the application of novel data management and analytic methods for linking large, non-experimental data.

Innovation

Management of Clinical Coding: The ICISS clinical coding tool systematically normalizes and links clinical nomenclatures. It implements advanced searching mechanisms to help researchers navigate ad crosswalk catalogs. Users can group codes into meaningful concepts to define diagnoses, treatments and outcomes for their study. Publishing of these concepts in an online “vocabulary” shares knowledge across campus.

Secure Virtual Data Computing: ICISS operates a virtual computing platform in collaboration with the university information technology office. This HIPAA and FISMA compliant environment enhances accessibility through remote “Windows” desktops, delivers extremely high data transfer rates (I/O) and centralizes licenses and access to tools (e.g., SAS, R, ArcGIS). The authentication and access management leverages existing controls such as data use agreements and IRBs.

Lessons Learned

Expertise: Building an integrated research system requires transdisciplinary collaborations in which experts from different fields share insights, perspectives, and tools. These individuals must be able to bridge technical and disciplinary gaps and communicate effectively across the team to achieve cohesive solutions.

Funding: Operationalizing an environment to support ‘big data’ requires both technical and human resources. While research funding streams from grants might offset the cost of personnel, a preliminary investment for data acquisition and technical infrastructure is essential. Aligning initial scope and path for expansion with true operational costs provides a baseline to secure adequate investments.

Conclusion, Next Steps

ICISS has successfully built a research environment enabling and streamlining research activities using big data. In order to increase activity and enable access to complex data for “new users” additional tools such as visualization, cohort discovery, and data mining are required. We believe that a close collaboration with experts in clinical informatics and information management will support the development of innovations in these areas.

Acknowledgements

Work on this presentation was supported by the Integrated Cancer Information and Surveillance System (ICISS), UNC Lineberger Comprehensive Cancer Center with funding provided by the University Cancer Research Fund of North Carolina.

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

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Jun 7th, 1:15 PM Jun 7th, 2:45 PM

Integrated Research System for Outcomes Research

Introduction, Objectives, Purpose

Healthcare research has been revolutionized by increased access to clinical data. However, complex data and research systems are required to support ongoing innovation. 21st century computing and advances in research methods make these systems possible - but research communities are required to efficiently adapt and integrate modern technologies, methods, and population concerns. Transdisciplinary collaborations are essential for tools development to operationalize these research systems. The Integrated Cancer Information and Surveillance System (ICISS) at the University of North Carolina at Chapel Hill represents a system that incorporates ‘big data’, analytic computing, research methods, and institutional knowledge. The environment systematically streamlines activities to support high impact publications on large, population-based, observational data.

Background/Context

ICISS was started 3 years ago focusing on:

Data: ICISS develops and maintains an innovative and comprehensive linked data resource of large, population-based datasets that collectively comprise measures across the cancer care continuum from screening to outcomes.

Systems: A secure computing platform paired with a software development team delivers technical support and innovative research tools. These tools are integrated into daily workflows and include navigating of clinical coding catalogs, cohort discovery, project tracking, and knowledge retention.

Methods: Within the transdisciplinary team, ICISS conducts cutting-edge cancer outcomes research through the application of novel data management and analytic methods for linking large, non-experimental data.

Innovation

Management of Clinical Coding: The ICISS clinical coding tool systematically normalizes and links clinical nomenclatures. It implements advanced searching mechanisms to help researchers navigate ad crosswalk catalogs. Users can group codes into meaningful concepts to define diagnoses, treatments and outcomes for their study. Publishing of these concepts in an online “vocabulary” shares knowledge across campus.

Secure Virtual Data Computing: ICISS operates a virtual computing platform in collaboration with the university information technology office. This HIPAA and FISMA compliant environment enhances accessibility through remote “Windows” desktops, delivers extremely high data transfer rates (I/O) and centralizes licenses and access to tools (e.g., SAS, R, ArcGIS). The authentication and access management leverages existing controls such as data use agreements and IRBs.

Lessons Learned

Expertise: Building an integrated research system requires transdisciplinary collaborations in which experts from different fields share insights, perspectives, and tools. These individuals must be able to bridge technical and disciplinary gaps and communicate effectively across the team to achieve cohesive solutions.

Funding: Operationalizing an environment to support ‘big data’ requires both technical and human resources. While research funding streams from grants might offset the cost of personnel, a preliminary investment for data acquisition and technical infrastructure is essential. Aligning initial scope and path for expansion with true operational costs provides a baseline to secure adequate investments.

Conclusion, Next Steps

ICISS has successfully built a research environment enabling and streamlining research activities using big data. In order to increase activity and enable access to complex data for “new users” additional tools such as visualization, cohort discovery, and data mining are required. We believe that a close collaboration with experts in clinical informatics and information management will support the development of innovations in these areas.