Developing Governance Approaches to Clinically Derived Research Resources
Nick Anderson, PhD (Panel Organizer)
Assistant Professor, Biomedical Health Informatics,
Associate Director, Biomedical Informatics, Institute of Translational Health Sciences,
University of Washington, Seattle, Washington
Keith Marsolo, PhD
Assistant Professor, College of Medicine,
Director, Software Development and Data Warehouse,
University of Cincinnati, Cincinnati, Ohio
Michael Kamerick
Director, Academic Research Systems,
Co-Director, Biomedical Informatics, Clinical and Translational Sciences Institute
University of California, San Francisco, California
Andrew Post, MD, PhD
Assistant Professor, Department of Biomedical Engineering,
Clinical Informatics Architect, Center for Comprehensive Informatics
Emory University, Atlanta, Georgia
Abstract of the possible paths to providing clinically
derived data for secondary research will be
Significant national infrastructure investment discussed.
from the Clinical Translational Science Awards
(CTSA), Office of the National Coordinator for General Description
Health Information Technology (ONC-HIT), the This panel will consist of three panelists and a
American Recovery and Reinvestment Act presenting moderator who will each discuss the
(ARRA) and others are collectively stimulating above topic. Each of these participants and the
a common level of technical expertise, evolving moderator either lead or are directly involved in
resource infrastructure and motivations to the architecture and development of clinically
discover, request, share, and analyze clinical and derived systems that seek to advance research
clinically acquired data for secondary research. discovery and re-use of clinical data. Dr.
However, despite these common evolving Anderson will set the context for discussion and
competencies, opportunities and engaged presentation.
stakeholders, there remains a lack of best Dr. Anderson will discuss the challenges of a
practices of how to establish effective data
sharing policies and practices that balance for cohort discovery and the expansion to aimplementing a de-identified federated network
assurance of protection to patients, institutions larger network that can support comparative
and researchers against research utility and
obligation to research and patient communities. Clinical Translational Research Project (CICTR)effectiveness research. The Cross-Institutional
This panel will explore four network-scale data was based on three geographically distributed
integration and delivery projects that span a integrated data repositories based on common
spectrum of end-user delivery modalities and i2b2 platforms that implemented SHRINE to
infrastructure topologies, but share common support semantically aligned queries to
challenges in establishing technically leveraged determine existence of patient with specific
governance processes to ensure high value use eligibility criteria. CICTR has now expanded to
for end-users. The panel participants will each 7 pilot sites as a foundation for comparative
discuss how the motivating project research effectiveness research with the Hospital
questions and target users are defining their Medicine Reengineering Network (HOMERUN)
technical implementation approaches to data project. He will present the challenges and
access and delivery. Overall, an understanding approaches associated with moving from
133
Developing Governance Approaches to Clinically Derived Research Resources
Nick Anderson, PhD (Panel Organizer)
Assistant Professor, Biomedical Health Informatics,
Associate Director, Biomedical Informatics, Institute of Translational Health Sciences,
University of Washington, Seattle, Washington
Keith Marsolo, PhD
Assistant Professor, College of Medicine,
Director, Software Development and Data Warehouse,
University of Cincinnati, Cincinnati, Ohio
Michael Kamerick
Director, Academic Research Systems,
Co-Director, Biomedical Informatics, Clinical and Translational Sciences Institute
University of California, San Francisco, California
Andrew Post, MD, PhD
Assistant Professor, Department of Biomedical Engineering,
Clinical Informatics Architect, Center for Comprehensive Informatics
Emory University, Atlanta, Georgia
Abstract of the possible paths to providing clinically
derived data for secondary research will be
Significant national infrastructure investment discussed.
from the Clinical Translational Science Awards
(CTSA), Office of the National Coordinator for General Description
Health Information Technology (ONC-HIT), the This panel will consist of three panelists and a
American Recovery and Reinvestment Act presenting moderator who will each discuss the
(ARRA) and others are collectively stimulating above topic. Each of these participants and the
a common level of technical expertise, evolving moderator either lead or are directly involved in
resource infrastructure and motivations to the architecture and development of clinically
discover, request, share, and analyze clinical and derived systems that seek to advance research
clinically acquired data for secondary research. discovery and re-use of clinical data. Dr.
However, despite these common evolving Anderson will set the context for discussion and
competencies, opportunities and engaged presentation.
stakeholders, there remains a lack of best Dr. Anderson will discuss the challenges of a
practices of how to establish effective data
sharing policies and practices that balance for cohort discovery and the expansion to aimplementing a de-identified federated network
assurance of protection to patients, institutions larger network that can support comparative
and researchers against research utility and
obligation to research and patient communities. Clinical Translational Research Project (CICTR)effectiveness research. The Cross-Institutional
This panel will explore four network-scale data was based on three geographically distributed
integration and delivery projects that span a integrated data repositories based on common
spectrum of end-user delivery modalities and i2b2 platforms that implemented SHRINE to
infrastructure topologies, but share common support semantically aligned queries to
challenges in establishing technically leveraged determine existence of patient with specific
governance processes to ensure high value use eligibility criteria. CICTR has now expanded to
for end-users. The panel participants will each 7 pilot sites as a foundation for comparative
discuss how the motivating project research effectiveness research with the Hospital
questions and target users are defining their Medicine Reengineering Network (HOMERUN)
technical implementation approaches to data project. He will present the challenges and
access and delivery. Overall, an understanding approaches associated with moving from
133
