validity of safety concerns resulting from pooled analyses but, said Compton, there is the potential for enormous benefit to both the public and private sectors if people would be willing to contribute these kinds of data to a common source that was accessible to everyone.


In her closing statement, Josephine Briggs, National Institutes of Health, emphasized the need for clinical research organizations across all sectors to build systems that incorporate “patient-facing” pathways to data sharing, leveraging the urgency patients feel around advancing treatments, their access to other sources of valuable information, and the fact that they often have different tolerances for privacy risks as compared to the well public. During the closing discussion period and throughout the workshop, many participants talked about forming stronger partnerships with patients as a priority action for advancing clinical research. There was also discussion on how best to give back to patients who donate their time and personal information, and willingly take on the risks associated with novel treatments and protocols.

Learning from Patients

Jay “Marty” Tenenbaum, founder and chair of Cancer Commons, echoed Briggs’ sentiments. Health care is witnessing the dawn of personalized genomic medicine, but not enough information exists to make informed clinical choices on the basis of genomic data. For example, asserted Tenenbaum, cancer is not just a handful of diseases, but hundreds or thousands of diseases depending on the particular molecular drivers of a person’s tumor. Clinical trials using small cohorts of volunteers are not enough; 95 percent of patients will not be treated in clinical trials. Tenenbaum suggested implementing the Institute of Medicine’s vision of a rapid learning community in cancer (NRC, 2010) as the driving application behind personalized genomic medicine. Genomic and clinical information should be captured “from every cancer patient, from every conceivable source, from clinical trials, from electronic health records, and from the patients themselves, because they are the ones who have the natural instincts and incentives to share.” Thousands of experiments occur every day as oncologists try to extend the lives of their patients and

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