Want to really speed up cancer research? Start sharing more data

Napster founder and Facebook investor Sean Parker recently announced he was donating $250 million to establish the Parker Institute for Cancer Immunotherapy, which will focus on a new model of rapid-cycle innovation and collaboration between six of the nation’s leading cancer centers. So far, more than 300 scientists have signed on.

One revolutionary aspect of this consortium is that the participating researchers have agreed to share not just data but also revenues from intellectual property rights derived from their discoveries. This is a crucial step — progress slows when researchers, cancer centers, and others keep information to themselves in the quest for more funding, licensing deals, and top billing in prestigious journals.

Cancer isn’t one disease; it’s hundreds. And it rapidly evolves to sidestep drug therapy. To beat it down and keep it down, it is essential to deliver the right medicines in the right sequence. No single cancer center sees enough data from enough patients to identify all of the variations needed to develop tailored treatments for the many subtypes of the disease, or for rare tumor types. Pooling and analyzing data from hundreds of thousands or millions of cancer patients can speed the development of new therapies.

Today, strong silos keep data trapped in clinical trial repositories, in patients’ electronic medical records, and in tumor scans or physician notes that aren’t in digital formats. By breaking down these silos, we can make quantum leaps in fighting cancer. What we need are data enclaves. These secure, typically cloud-based environments would give researchers access to patient data stripped of names, addresses, and other identifying information. These data would come from cancer clinical trials, pharmaceutical companies, the National Cancer Institute, and the nation’s leading cancer centers. Any institution that contributes data would have access to the enclave, provided it commits to ongoing data sharing and abides by standard licensing agreements.

No one wants to give away what might be a key to developing the next billion dollar cancer treatment. Data enclaves can help solve this problem by creating new revenue streams that flow to everyone who shares data.

That would mean setting up intellectual property rights for products developed from the data. For instance, if a drug based on a cancer mutation discovered in an enclave passed through the FDA’s Accelerated Approval Program, the drug’s sponsor would pay royalties back to the enclave. That money could be used to support future cancer research projects.

Eventually, an enclave would be a self-funding entity.

Everyone would benefit from cancer data enclaves. Companies and researchers could identify key tumor variants and rare subtypes of cancer far faster than they can today. Insurers could develop precision guided treatment pathways. Patients and doctors would have a better sense of what works.

The International Committee of Medical Journal Editors has proposed that authors share de-identified patient data from published articles of clinical trials that are “required to reproduce the article’s findings” within six months of publication. That’s a good start to populating cancer data enclaves. But getting them up and running would require additional steps.

As part of his National Cancer Moonshot Initiative, Vice President Biden could offer prospective enclaves seed money if they meet certain minimum standards. The moonshot should also rally stakeholders to agree on a new intellectual property rights regime for biomarkers (objectively measurable indicators of disease progression, such as tumor size) developed from enclaves’ research. This would provide a strong financial impetus to share critical data that could shave years off the drug development process. Drug companies, philanthropists, or foundations should be allowed to contribute funding for data de-identification and curation. The Centers for Medicare and Medicaid Innovation and other governmental organizations could also play roles in launching cancer data enclaves.

In the fiercely competitive pharmaceutical industry, collaboration might seem to be a bridge too far. But there are promising precedents, like Project Data Sphere. In this industry-led platform, launched in 2014, pharmaceutical companies have agreed to share data about nearly 30,000 cancer patients to help develop better clinical trial designs and identify cohorts of patients who don’t benefit from standard chemotherapy. Founding members included Amgen, AstraZeneca, Bayer, Celgene, Janssen, Memorial Sloan Kettering Cancer Center, Pfizer, and Sanofi. If these competitors can share data, so can others.

If we’re serious about winning the war against cancer, data enclaves and targeted intellectual property rights for biomarkers can create a business case for data sharing. Marrying altruism with self-interest can show us the way.

Tom Coburn, MD, a physician and former senator from Oklahoma, is an adviser to Project FDA at the Manhattan Institute. Daniel P. Petrylak, MD, is professor of medicine and urology at the Yale Cancer Center.