Big talk about big data, but little collaboration

There’s been much talk lately about big data’s potential value in treating cancer, but little effort has been made to make big data bigger — and more effective — by sharing what’s being collected.

Big data in clinical cancer care involves collecting vast amounts of data about patients that can be analyzed to identify trends, associations and patterns that would help oncology professionals develop better and more tailored therapies for cancer patients.

{mosads}Today, most of this information is available in only about an estimated 4 percent of cases for those patients involved in clinical trials.

Big data initiatives — in government, academia and industry — are striving to collect genomic and other patient information from the remaining 96 percent of cases through electronic health records (EHR) and other cancer-related registries.

However, not all EHRs and registries are compatible with one another; there is a lack of standardization; there is not consensus about what constitutes “good” data; there are privacy issues involved; not all patients and physicians understand or are incentivized to contribute to the effort; much of the data collected is proprietary; and many of the entities involved in big data initiatives are competing rather than collaborating.

There are currently numerous big data initiatives underway. Some examples include:

• On the federal level: The president’s Precision Medicine Initiative, the vice president’s cancer “moonshot” program, and the Department of Veterans Affairs’ Million Veteran Program all depend on big data.
• On the academic and professional society level: The American Society of Clinical Oncology (ASCO) — the world’s largest clinical oncology organization — is developing CancerLinQ, a health-information technology platform “assembling vast amounts of usable, searchable, real-world cancer information into a powerful database”; and the American Association for Cancer Research (AACR) — the world’s oldest and largest scientific organization focused on cancer research — is working on Project Genie (Genomics, Evidence, Neoplasia, Information, Exchange) to “provide the ‘critical mass’ of genomic and clinical data necessary to improve clinical decision making and catalyze new clinical and translational research.”
• On the academic and for-profit level: Together, IBM’s Watson supercomputer and the New York Genome Center are developing a “national tumor registry to match genetic characteristics with available treatments for patients.”
• On the for-profit level: Flatiron Health is “building a disruptive software platform that connects cancer centers across the country.”

In addition, there have been numerous conferences convened over the last few years to discuss the issues related to what big data is, how it can be standardized, and how it can be used more meaningfully for patient care.

But what many of these efforts lack is the oversight and will to make these newly created silos share the big data they are collecting to provide a comprehensive clearinghouse of information benefitting all.

Congress has a vested interest in ensuring that government plays a constructive role in the promise that big data can bring to reducing healthcare costs through disease prevention and treatment. Great leaps in society take place through public-private partnerships.

Perhaps Congress should consider legislation to make data-sharing mandatory for all information gathered through any efforts supported by federal dollars and to encourage collaboration between public and private entities for the common good.

Brinker is the founder of Susan G. Komen, the world’s largest breast cancer charity. She was previously a Goodwill Ambassador for Cancer Control to the U.N.’s World Health Organization; U.S. chief of protocol; and U.S. ambassador to Hungary. Rosenthal is an independent journalist who covers issues, controversies and trends in oncology as special correspondent for MedPage Today. He is the founder of the National Cancer Institute Designated Cancer Centers Public Affairs Network, and helped organize a number of national medicine-and-the-media conferences. The opinions expressed belong solely to the authors.