Informatics Needs and Challenges in Cancer Research

"Informatics Needs and Challenges in Cancer Research" by ed. Sharyl J. Nass and Theresa Wizemann
Workshop Summary. National Cancer Policy Forum; Board on Health Care Services; Institute of Medicine
NAS Press | 2012 | ISBN: 0309259487 9780309259484 | 147 pages | PDF | 6 MB
The issue was designed to raise awareness of the critical and urgent
importance of the challenges, gaps and opportunities in informatics; to
frame the issues surrounding the development of an integrated system of
cancer informatics for acceleration of research; and to discuss
solutions for transformation of the cancer informatics enterprise.

There is a particular need to integrate research and clinical data to
facilitate personalized medicine approaches to cancer prevention and
treatment - for example, tailoring treatment based on an individual
patient's genetic makeup as well as that of the tumor - and to allow for
more rapid learning from patient experiences.
As information technology becomes an integral part of health care, it is
important to collect and analyze data in a way that makes the
information understandable and useful. Informatics tools - which help
collect, organize, and analyze data - are essential to biomedical and
health research and development.
The field of cancer research is facing an overwhelming deluge of data,
heightening the national urgency to find solutions to support and
sustain the cancer informatics ecosystem.
To further examine informatics needs and challenges for 21st century
biomedical research, the IOM's National Cancer Policy Forum held a
workshop February 27-28, 2012.

Contents
1 INTRODUCTION
Organization of the Workshop and Summary
References
2 OVERVIEW OF THE CANCER INFORMATICS LANDSCAPE
Structured, Interoperable Research and Clinical Information
Systems—Or the Lack Thereof
Data Overload
Databases That Foster Learning
Making Connections
Robust EHR Systems and Research Databases
Cancer Center Informatics: Connecting with Patients
Research Information Exchange
Cancer Cooperative Group Informatics: Connecting Researchers
Informatics Tools Used by the NCI Cooperative Group Program
Opportunities for an Innovative Informatics Structure
Clinical Translational Research Informatics: Connecting the Steps of the Research Process
Hypothesis Driven Versus Hypothesis Generating
Study Design
Informatics Challenges for Translational Research
Moving Clinical Translational Informatics Forward
caBIG—The Vision and the Reality
Looking Forward: A Three-Step Approach to Success in Informatics Innovation
Community Participation in Moving Informatics Forward
References,
3 INFORMATICS AND PERSONALIZED MEDICINE
An Integrative Systems Approach to Biology, Medicine, and Complexity
Biology and Medicine as Informational Sciences
Systems Biology Infrastructure
Holistic Systems Experimental Approaches
Emerging Technologies
Domain-Driven,Transforming Analytic Tools
Applications of Systems Medicine: The P4 Approach
Information Technology for Health Care
References
4 INFORMATICS-SUPPORTED CANCER RESEARCH ENDEAVORS
Case Example: Dell-TGen Cloud Computing Collaboration in Personalized Medicine for Pediatric Neuroblastoma
An N = 1 Approach to Clinical Research
Molecularly Guided Individualized Cancer Therapy
Opportunities in the Cloud
Case Example: National Comprehensive Cancer Network Outcomes Database
NCCN Guidelines
NCCN Oncology Outcomes Database
Case Example: IT Innovations for Community Cancer Practices
System Design and Datasets
Supporting Clinical Outcomes and Research
Data Governance
Case Example: Secondary Uses of Data for Comparative Effectiveness Research
Secondary Use of Data
Sustainability
Cross-Cutting Issues
Engaging Patients
Building Trust: Privacy, Consent, and Ownership
Data Granularity
Secondary Use
Engaging Private Practice and Extramural Researchers
References
5 POTENTIAL PATHWAYS AND MODELS FOR MOVING FORWARD
Public Data-Driven Systems and Personalized Medicine
Commoditization of Data
Integrative Genomics to Identify Novel Targets
Genomic Nosology and Drug or Diagnostic Discovery
Adapting to Data-Intensive, Data-Enabled Biomedicine
Data Production, Analysis, and Utilization in Biomedicine
Importance of Having the “Right” Data in the System
Computational Capabilities for Large Datasets
Moving from Silos to Systems
Big Data and Disruptive Innovation: Models for Democratizing Cancer Research and Care
Learning from Users of Big Data in Diverse Non-Health Venues
Disruptive Innovation
Democratizing Big Data Informatics for Cancer and Other Therapeutic Areas
Consumers as Disruptive Innovators
The EHR and Cancer Research and Care
Enhancing Uptake of EHRs
The EpicCare System as a Model for the Users of EHRs in Cancer Research and Care
Cancer Center–Based Networks for Health Research Information Exchange
Personalized Cancer Care
Proposed Federated Data Model
Other Models and Pathways
Patients Helping Patients
Providing a Substrate for Innovation
Mining Data to Assess the Quality of Cancer Care
Fostering Sharing
Education, Training, and Funding
If Data Are Available, Users Will Come
References
6 PROPOSAL FOR A COALITION OF ALL STAKEHOLDERS
Achieving Data Liquidity in the Cancer Community
Principles
Operational Strategy and Activities
Coalition Governance, Funding, and Sustainability
Working Toward a National System
7 TRANSFORMING CANCER INFORMATICS: FROM SILOS TO SYSTEMS
A Framework For Action
Changing Minds, Changing Behaviors
ACRONYMS
APPENDIXES
A Workshop Agenda
B Speaker, Moderator, and Panelist Biographies


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