Cancer Data Science Pulse

Data Sharing

Pooling data from numerous sources strengthens the power of the information, but only if it can be meaningfully connected. Dr. Melissa Haendel, Director of the Translational and Integrative Sciences Laboratory, Oregon State University (OSU), and Principal Investigator for the NCI Center for Cancer Data Harmonization, and Julie McMurry, Associate Director of the Translational and Integrative Sciences Laboratory, OSU, describe the basics of harmonization and how it can help in wrangling massive amounts of data to make them more valuable to research.

Just as numerous role models can shape, foster, and guide a child into adulthood, so can the various stakeholders within the broader cancer research community play a pivotal role in the success of data sharing efforts. Your input is critical as NCI seeks to make the most of the federal investment to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults.

Biomedical knowledge is typically centered around the variety of biological entity types, such as genes, genetic variants, drugs, diseases, etc. Collectively, we refer to them as "BioThings." The volume of biomedical data has grown explosively, thanks to the efforts of many different researchers and consortia. This explosive growth includes many different types of data using many different formats and standards, making it difficult to unify the disparate sources of data.

Broad and equitable data sharing can be interpreted many ways. For NCI's Office of Data Sharing, this means balancing the support of exciting science and innovation and the needs of research and participant communities with privacy and realistic expectations. This balance is possible when the policies we create acknowledge the benefits and challenges the public, research, and participant communities experience as they share their information to advance disease knowledge and improve healthcare.

Dr. Jaime M. Guidry Auvil serves as the director of the newly-launched NCI Office of Data Sharing (ODS). Headquartered at the Center for Biomedical Informatics and Information Technology, ODS is creating a comprehensive data sharing vision and strategy for NCI and the cancer research community.

I recently joined NCI to help support strategic data sharing and informatics projects within the Center for Biomedical Informatics and Information Technology (CBIIT). Having worked on information management at another Institute for five years and the trans-NIH Big Data to Knowledge (BD2K) initiative since its inception, this is an exciting opportunity for me to continue to contribute to enhancing data science across the biomedical community.

In recent years, genomics has been described as a big data science on par with the likes of Twitter, YouTube, and the scientific pursuit of understanding the universe.

Precision medicine has quickly moved to the forefront of clinical research and practice, and is particularly pertinent to cancer since cancer is a disease of the genome. The need to accelerate discovery in cancer research has been further propelled by the Beau Biden Cancer Moonshot, challenging the community to make a decade's worth of progress in five years.

Scientific discovery involves collecting and analyzing data, and communicating new knowledge arising therefrom. What happens, though, when someone wants to repeat an experiment, or build on an existing approach? For this to happen, there needs to be sufficient information in the public domain and data that is accessible and understandable to the scientist.

The cost of DNA sequencing has dropped more than one million-fold over the last decade, making it increasingly possible to discover the genetic basis of cancer and response to treatment.