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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."