Abstract 2603: A patient driven cancer database to collect information, analyze data, and predict outcomes
Authors: Lori Marx-Rubiner, AnneMarie Ciccarella, Vincent An, Jared Bass, Will Berman, Jackson Berry, Chloe Chan, Christopher Han, Louis Harboe, Joshua Lurie, Sara Ma, Parker Malachowsky, Naylee Nagda, Simon Schneider, E. Bircan Çopur, Jorge J. Nieva, Jan Liphardt, Peter Kuhn, Jeremy M. Mason
Journal: Cancer Research (2017)

Abstract It is widely held that major breakthroughs in cancer treatment will result from properly amassing, analyzing and utilizing existing and emerging “big data.” To date there is no single vehicle that integrates the data available, and of those being developed, none that put patient needs and outcomes as primary foci. CancerBase was released as part of the Cancer Moonshot launch in June 2016. It is a global, real-time data collection tool designed by and for patients. Patients were recruited through social media to share their information, including but not limited to, demographic details, personal cancer data, and history of treatment. Combining open text boxes and drop down preselected response boxes allow for the capture of information in a way that patients understand. In addition to cancer data, Facebook comments demonstrated immediate engagement with the tool and captured the organic community of patients who eagerly shared their stories with others. Personal interviews and a communal Twitter chat have recorded the interests and priorities from patients who were not necessarily familiar with CancerBase. In addition to medical data, general information and questions CancerBase participants wanted to add to the system have been collected. Incorporation of patient-driven deliverables is unique in the space of big data and cancer in that other tools, both existing and still in development, are geared toward the needs of researchers, payors, policy-makers and clinicians. CancerBase is unique in that it adapts to growth. Patient feedback drives improvements via ongoing communication between developers, PIs and participants. Wherever possible, participant recommendations and questions are rapidly incorporated into the website design. The remaining patient recommendations are cataloged and will be incorporated in the forthcoming releases of CancerBase. The initial launch of CancerBase demonstrated patient willingness to share personal, anonymized data and to recruit others. Patients were eager to engage and manipulate the limited data collected in the first release. Moving forward, patient priorities include: How do my treatment decisions compare with others and what can I learn from those who have come before me; What is the likelihood that I will have a recurrence; and, in the case of metastatic patients, how long might I have between progressions, to which organ(s) is progression most likely, and what are my likely survival outcomes. CancerBase is a database tool that resonates with the patient community and is driven by patient needs and interests. As the tool becomes increasingly robust it will grow to support the decision-making needs of clinicians and guide the investigations of researchers. The relaunch of CancerBase in Spring 2017 will address emerging patient concerns, integrate collected data, and utilize existing forecasting databases to add value to patients. Citation Format: Lori Marx-Rubiner, AnneMarie Ciccarella, Vincent An, Jared Bass, Will Berman, Jackson Berry, Chloe Chan, Christopher Han, Louis Harboe, Joshua Lurie, Sara Ma, Parker Malachowsky, Naylee Nagda, Simon Schneider, E. Bircan Çopur, Jorge J. Nieva, Jan Liphardt, Peter Kuhn, Jeremy M. Mason. A patient driven cancer database to collect information, analyze data, and predict outcomes [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2017; 2017 Apr 1-5; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2017;77(13 Suppl):Abstract nr 2603. doi:10.1158/1538-7445.AM2017-2603