“Big data” is being touted as having an important role to play in the treatment of cancer. But thus far it’s mostly just talk, because the data are not being shared.
In a blog post on The Hill, Nancy G. Brinker, founder of the Susan G. Komen cancer charity, and Eric T. Rosenthal, a journalist who covers cancer, wrote that the promise of progress offered by big data has yet to be kept.
While the notion of the analysis of huge amounts of data to find trends, patterns, and associations that could be beneficial in developing better, more targeted therapies is an attractive one, and data collection continues apace by government, industry, and academia, the reality is that there are a number of obstacles preventing all the puzzle pieces from coming together.
Among those obstacles are the incompatibility of electronic health records (EHRs) and cancer-related registries; a lack of standardization; disagreement about the definition of “good” data; privacy issues; lack of cooperation or desire to participate by patients or physicians; proprietary data; and competition instead of collaboration among various big data entities.
Still, that doesn’t mean nothing is being done. Federal big data initiatives include the Precision Medicine Initiative, the cancer “moonshot” program and the Department of Veterans Affairs Million Veteran Program. Academically and among professional societies, the American Society of Clinical Oncology (ASCO) is at work on health information technology platform CancerLinQ, and the American Association for Cancer Research (AACR) is contributing Project Genie (genomics, evidence, neoplasia, information, exchange).
The New York Genome Center and IBM’s Watson are joined in an academic and for-profit collaboration in developing a national tumor registry intended to match genetic characteristics with available treatments. And on a for-profit basis, Flatiron Health is working on a software platform to connect cancer centers throughout the U.S.
But, the authors write, there’s no central oversight, no top of the pyramid to coordinate efforts and see to it that data are shared rather than siloed. Congress, they say, might want to consider legislation to compel data sharing among all these diverse entities, with those receiving federal dollars legally bound to do so and other public and private entities encouraged to share for the good of the public.