“We are on the cusp of breakthroughs that will save lives, benefit all of humanity. But we have to work together.” Vice President Joe Biden’s words at the American Association for Cancer Research conference resonate as a clear call to action. When we collaborate and share our expertise, the cancer informatics community can bring a formidable wealth of knowledge and crucial skills to drive and facilitate cancer research.
A panel discussion at the Health Datapalooza 2016 explored the kinds of collaboration we must strive for to meet the goals of the Precision Medicine Initiative and the Vice President’s Cancer Initiative. The panelists described inter-agency projects and themes that can break down silos and bring us closer to a national learning healthcare system.
Through two parallel efforts, the POP and the Million Veteran Program, the Department of Veterans Affairs (VA) is collecting somatic and germline mutation data on patients. Data from the Electronic Health Records is integrated with molecular data to facilitate clinical research and to allow for local learning and optimization of health care. These VA efforts are complemented by activities currently underway at NCI. For example, the Genomics Data Commons (GDC) represents a data-sharing platform where we can harmonize and share data from these types of precision medicine studies; and the Cancer Genomics Cloud Pilots provide democratized access to such data, co-locating the compute capabilities and tools with the data.
To enable the kinds of large-scale analysis required to understand and integrate genomic, clinical, and other types of big data, a highly-trained workforce is a necessity. The VA is collaborating with NCI to allow NIH-sponsored physical scientists to work at VA sites and learn to work with VA clinical data. Collaborative research efforts with VA clinicians will focus on enhanced utilization and application of VA informatics systems to positively impact patient-centered care for veterans.
Letting the Patient’s Experience Inform Research
Recognizing that cancer is not only an acute event, but also a chronic disease, and that patients are looking to improve their life experience during and after treatment, NCI is working with the Department of Defense on the Analytic Tool for the Objective Monitoring of Human Performance (ATOM-HP) project to collect information directly from patients. Monitoring the patient through the use of wearables and sensors provides quantified, real-time data on the patient’s status. This data can then be used to inform treatment decisions, to understand what patients can manage and tolerate, and to develop a more holistic, integrative approach to cancer care.
One common thread of these initiatives is the need for data scientists and informaticists to collaborate to create the data sharing and integration mechanisms, tools, and algorithms required to support a learning healthcare system that improves outcomes and the patient experience. Data from across the cancer research and care continuum need to be integrated and accessible for large-scale analytics. These inter-agency pilots are exemplars of the innovation needed and what can be done when we work together to break down barriers and focus on the shared goal of reducing suffering and death from cancer.
Read more about NCI’s efforts to advance cancer research through data sharing on Cancer Currents.
For more information on Datapalooza 2016, please visit http://healthdatapalooza.org/.