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1
Introduction
Informatics tools are essential to biomedical and health research and
development. The field of cancer research, like most scientific disciplines,
is facing an overwhelming deluge of data that are increasingly challenging
to collate, store, access, analyze, and exchange. There is a particular need
to integrate research and clinical data to facilitate personalized medicine
approaches to cancer prevention and treatment (e.g., 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 (IOM,
2010, 2011). There is an increased national urgency to find solutions to
support and sustain the cancer informatics ecosystem, especially in light
of the recent devolution of the National Cancer Institute's (NCI's) Cancer
Biomedical Informatics GridŽ (caBIG) program.1
To further examine informatics2 needs and challenges for 21st century
biomedical research, the National Cancer Policy Forum of the Institute of
1caBIG is discussed further in Chapter 2. Note that caBIG and Cancer Biomedical
Informatics Grid are registered trademarks.
2Biomedical informatics has been defined as the science that develops methods, tech-
niques, and theories regarding how to use data, information, and knowledge to support and
improve biomedical research, human health, and the delivery of health care services (http://
www.amia.org/glossary). In the clinical arena, informatics is an applied and interdisciplinary
field, at the intersection of information science, computer science, and clinical medicine, to
provide improved patient care by harnessing and optimizing health information technology
(Miriovsky et al., in press).
1
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2 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH
Medicine (IOM) held a public workshop3 in Washington, DC, on Febru-
ary 27 and 28, 2012, using cancer research as a model research enterprise
to consider the role of informatics from basic discovery science through
translational research, product development, clinical trials, comparative
effectiveness research, and health services research.
The workshop 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 tools for acceleration of research; and to discuss solutions
for transformation of the cancer informatics enterprise.
Specifically, invited speakers and participants considered the following:
ˇ the design, development, and integration of informatics tools in
cancer research;
ˇ standards for cancer informatics tools;
ˇ interoperability and harmonization;
ˇ infrastructure needs for research;
ˇ data annotation and curation of multiple complex datasets;
ˇ methods for data use and representation;
ˇ the implications of implementing effective informatics tools for
research; and
ˇ sustainability, governance, policy, and trust.
John Mendelsohn, co-director of the Khalifa Institute for Personal-
ized Cancer Therapy at the University of Texas M.D. Anderson Cancer
Center and chair of the IOM's National Cancer Policy Forum, stressed
that informatics is much more than electronic health care records. He
called upon participants to offer practical action items that could help to
advance knowledge and improve informatics as applied to cancer research.
An overview of key discussion points raised by individual presenters is
provided here.
3This workshop was organized by an independent planning committee whose role was
limited to the identification of topics and speakers. This workshop summary was prepared
by the rapporteurs as a factual summary of the presentations and discussions that took place
at the workshop. Statements, recommendations, and opinions expressed are those of the
individual presenters and participants, are not necessarily endorsed or verified by the IOM
or the National Cancer Policy Forum, and should not be construed as reflecting any group
consensus.
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INTRODUCTION 3
OVERVIEW OF KEY POINTS HIGHLIGHTED
BY INDIVIDUAL PRESENTERS
Cancer researchers and care providers are facing an over-
whelming volume of data from a multitude of sources and are
hampered by the inability to merge those data or to communicate
effectively across disciplines and stakeholders because of divergent
standards, lack of interoperability, and other barriers.
Biomedical informatics could be advanced by
ˇ bandoning siloed datasets for large-scale, standardized,
a
interoperable open source databases with professional annota-
tion, analytics, and curation;
ˇ integrating research and clinical data in an organized and effi-
cient manner;
ˇ supporting an open source platform for the development of
software; and
ˇ considering secondary uses of IT infrastructure as a way to
reduce overall costs.
The clinical translational research process could be advanced by
ˇ bringing routinely gathered clinical data up to the same stan-
dards as high-quality research data;
ˇ developing new statistical methods and study designs for use
with clinical data;
ˇ developing better data mining and filtering approaches to sort
through massive datasets;
ˇ connecting genomic and molecular data with clinical data;
ˇ structuring clinical data appropriately to support research;
ˇ integrating data that are already in the public domain to gener-
ate new hypotheses for testing;
ˇ ensuring that these processes are guided in a way that is com-
patible with a research framework; and
ˇ using a systems view of disease, which postulates that disease
is the result of perturbation of one or more biological networks
that leads to altered expression of information, to address the
complexity of biology.
continued
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4 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH
Clinical cancer care could be improved by
ˇ developing frameworks that can help clinicians make progres-
sively better care decisions with each individual patient, even
in the absence of gold standard data;
ˇ making it easier for every oncology practice to care for a patient
on a clinical trial protocol; and
ˇ developing a coalition as a nonprofit membership organization
comprised of all stakeholders, who are deeply committed to
actualizing a common vision of data liquidity to achieve person-
alized cancer care and a rapid-learning health care system.
Patient engagement could be enhanced by
ˇ building trust through improved transparency, both to the public
at large and to patients, about how patient data are used, the
typical tools that institutions use to protect data, and oversight
and accountability for those protections;
ˇ empowering patients to drive disruptive innovation in health
care; and
ˇ providing more guidance about how to comply with the Health
Insurance Portability and Accountability Act (HIPAA) Privacy
Rule.
ORGANIZATION OF THE WORKSHOP AND SUMMARY
The report that follows summarizes the presentations and discussions
by the expert panelists and participants. As introduced by Sharon Murphy,
scholar-in-residence at the IOM, the workshop was organized into three
main panel sessions. The first panel session provided an overview of the
informatics landscape and framed the issues from a variety of stakeholder
perspectives, including clinical and translational research, epidemiology
and biostatistics, major cancer centers, and cancer cooperative groups
(Chapter 2). Following the overview, the keynote address was delivered by
Leroy Hood of the Institute for Systems Biology, focusing on the role of
informatics in personalized medicine (Chapter 3). The second panel session
incorporated several illustrative "use cases" reflecting successful informatics-
supported approaches to managing large, complex datasets, including data
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INTRODUCTION 5
collection, storage, and retrieval; data analysis and reporting; and data
sharing (Chapter 4). The third panel session challenged participants to look
forward and consider new models and potential strategies to advance infor-
matics as a community and reap the most value from the huge investment
in cancer research (Chapter 5). A proposal for a broad stakeholder coalition
as one pathway for addressing the informatics needs of the cancer research
community was also described (Chapter 6). In closing the workshop, Amy
Abernethy, associate professor of medicine in the Division of Medical
Oncology at the Duke University School of Medicine, offered reflections
on the themes discussed and summarized the suggestions made for moving
forward (Chapter 7).
REFERENCES
IOM (Institute of Medicine). 2010. A foundation for evidence-driven practice: A rapid learning
system for cancer care: Workshop summary. Washington, DC: The National Academies
Press.
IOM. 2011. Digital infrastructure for the learning health system: The foundation for continuous
improvement in health and health care: Workshop series summary. Washington, DC: The
National Academies Press.
Miriovsky, B. J., L. N. Shulman, and A. P. Abernethy. 2012. In press. Importance of health
information technology, electronic health records and continuously aggregating data to
comparative effectiveness research and learning health care. Journal of Clinical Oncology.
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