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7
Transforming Cancer Informatics:
From Silos to Systems
A recurring topic throughout the workshop was the need for change:
changing the attitudes, behavior, and culture surrounding the sharing of
data and embracing solutions, particularly disruptive solutions, that will
drive those changes, according to Sharon Murphy of the IOM. The oppor-
tunity is obvious, she said, and society is losing the value of all the data that
have been generated by companies, academics, NIH, and others as long
as the data are just sitting there. Participants discussed the need to move
from silos full of information to integrated systems that provide actionable
knowledge to advance cancer care. Scientific and clinical discoveries can be
realized much more rapidly with this type of systems infrastructure in place
than without, said Lawrence Shulman of Dana-Farber, adding that every
year that an important discovery is delayed, thousands of patients die.
Amy Abernethy, associate professor of medicine in the Division of
Medical Oncology at the Duke University School of Medicine, summarized
the four main themes of discussion throughout the workshop.
95
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96 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH
Main Workshop Themes Identified by Amy Abernethy
1.Embrace cancer informatics. Cancer informatics provides
opportunities to do the following:
· improve the efficiency of the discovery engine;
· bridge the gap between discovery and health;
· reduce the risk of losing valuable data assets; and
· share lessons learned in cancer research so they can be
leveraged in cancer care and other medical disciplines.
2.Embrace solutions. Embrace complexity and find solutions to
address the following issues:
· data availability, integration, and exchange;
· democratization of information;
· technical hurdles;
· interoperability;
· governance;
· value and appropriate use of experimental and observa-
tional data;
· validation and quality;
· workforce;
· analytics and methods development;
· visualization and representation of big datasets; and
· cyberinfrastructure.
3.Establish an ecosystem of partners, including, but not limited
to, the following:
· patients, consumers, advocates;
· cancer centers, physicians;
· biomedical research;
· clinical researchers, quantitative scientists, basic scien-
tists, outcomes researchers; in industry, academia, and
government;
· cancer clinical trials cooperative groups;
· information technology developers and providers;
· payers, administrators; and
· federal agencies.
4.Generate trust. Earning the trust of patients, providers,
researchers, and society in general is the core underlying issue
for the following concerns:
· data privacy and security;
· accountability; and
· data ownership.
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TRANSFORMING CANCER INFORMATICS 97
A FRAMEWORK FOR ACTION
As a starting point for moving forward, a proposal for a coalition of
all stakeholders was introduced during the workshop and participants were
urged to provide feedback (see Chapter 6). Abernethy reiterated the main
objectives of the proposed coalition as outlined by Marcia Kean of Feinstein
Kean Healthcare:
· Catalyze and help nurture a community to develop and make avail-
able, pre-competitively, an open digital framework for biomedicine.
· Ensure that the open digital framework stays current with all tech-
nological advances.
· Ensure that all biomedical organizations have access to the open
digital framework, so that they can achieve their goals for improved
patient care and more productive research.
· Help to support a flourishing ecosystem of biomedical organizations
that can fuel each other's activities through frictionless flow of data.
· Serve as a test bed for the digital infrastructure.
Changing Minds, Changing Behaviors
As suggested by George Poste (Chapter 5), embracing the complexity
of cancer informatics and taking action to drive change will require the
courage to acknowledge both the challenges and the need for radical change;
the resilience to continue forward in the face of entrenched constituencies;
competitiveness and new participants (including consumers) who coordi-
nate and collaborate to generate disruptive change; and accountability and
responsibility.
The first step in taking action, Abernethy summarized, is to come
together as partners and plan how to move cancer informatics forward (Fig-
ure 7-1). Publicprivate partnerships are essential, she said, as is investing in
the data and the cyberinfrastructure. Strategies should leverage the models
and successes of other disciplines and industries and should facilitate activi-
ties that will contribute to the development of the end-to-end infrastruc-
ture system (e.g., just-in-time standards, public databases, EHRs, analytic
methods, large-scale standardized protocols and procedures, reuse of data
and IT infrastructure, data dictionaries, metadata, validation, and security
solutions). Tools should be built with the users and use cases in mind (a
bottom-up strategy). Moving forward will also require training, education,
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98 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH
Clinical Care
and Decision Education for
Support Clinicians and
Patients
Analytics and
Sense-Making
Clinical
Discovery Research--
Sciences Discovery and
Including CER
Genomics
FIGURE 7-1 Hypothetical framework highlighting key elements of an end-to-end
cancer informatics system.
NOTE: CER = comparative effectiveness research, EHR = electronic health record, IT
= information technology.
Figure 7-1 redone
SOURCE: Abernethy presentation (February 28, 2012).
and career development to build a workforce that can interface seamlessly
across biomedicine, computation, and informatics, she noted.
Apparent throughout the discussion of the gaps, challenges, and
potential solutions for cancer informatics was the overarching theme that
data should be used for the benefit of society. Data are accumulating fast.
"We have the opportunity to harness these data or let them pass us by,"
Abernethy concluded, and she encouraged participants to "be a part of
the plan."
