A report from oncologists and cancer researchers for the national Cancer Moonshot initiative highlights the massive problem that disparate data and disconnected databases have become in the fight against cancer.
The Cancer Moonshot program was launched by President Obama in this year’s State of the Union address; Vice President Biden now oversees the $1 billion effort to eradicate cancer using public-private partnerships and carefully directed funding. In a report released last week, a panel of scientists, physicians, and company executives recommended 10 areas where new investment will make the biggest difference. Aside from a few recommendations focused on basic research or technology development, virtually all of the panel’s suggestions include some aspect of improved data sharing and interoperability of databases.
In the course of making these recommendations, the panel considered more than 1,600 ideas. The experts split up into seven different groups focused on key oncology themes, such as pediatric cancer, immunology, and early detection. While each group left its fingerprints on the final recommendations, the overarching theme of data sharing—or the inability to share—carried across almost all of the selected topics. According to the report, “Cancer Moonshot funding would enable a remarkable level of coordination—especially across organizations—that will allow data from many different researchers, clinicians, and patients across the country to be assembled in new ways that will help them be of use to patients, doctors, and researchers.” This illustrates just how broken modern cancer care is, and simultaneously represents an incredible opportunity for anyone with a real solution.
The problems of data in medicine aren’t limited to cancer, and they are the result of myriad byzantine decisions spanning decades. Consider just one: the Health Insurance Portability and Accountability Act, better known as HIPAA. Signed into law in 1996, HIPAA accomplished several important things, including enacting a strict privacy rule to prevent the release of a patient’s medical data without his consent. This stemmed from great intentions, but today, HIPAA is a thorn in the side of researchers around the country. Zealous application of HIPAA rules now prevents scientists from sharing data with each other, even when doing so would further basic research or help them develop a cure for that patient’s illness. Imagine an entire universe of rules like HIPAA, all governing different areas of data and privacy and security, and you begin to understand why medical progress doesn’t happen as quickly as we would like.
As for the recommendations, the goal of boosting clinical trial enrollment is targeted with proposals for a data-heavy patient network and specialized clinical trial network. Long-term studies to track data are envisioned for better managing cancer symptoms and more effective prevention or early detection of cancer. One recommendation would increase research access to tumor specimens, which are often untapped treasure due to privacy regulations or too-narrow consent policies. Another would build something like a Google Map for tumors, giving scientists a high-resolution view of tumors as they evolve over time. To cap them all off, the panel recommended the development of a “cancer data ecosystem” that would facilitate data sharing across institutions and enable the kind of collaborative research that too often gets quashed because of privacy regulations.
Interestingly, the panel’s report also identified several policy challenges that came up during its discussions. These were beyond the panel’s bailiwick, but they were nevertheless included in a nod to the many other issues that will have to be addressed to improve cancer care in this country. Among the problem areas: health insurance coverage and reimbursement; privacy and consent in patient data; and fragmented patient care.
These problems, and cancer in general, can’t possibly be solved all at once. But it’s extremely encouraging to see recommendations that get right to the heart of the problems facing cancer care. And if national sharing of patient data for medical progress were to improve as a result, it would be a welcome fringe benefit.
Government + Policy
Data Sharing: Key Challenge for Cancer Moonshot (& American Health)
If we're going to make progress in healthcare, we need to connect up the data. A report for the national Cancer Moonshot initiative highlights the massive problem disconnected databases have become in the fight against cancer. But this problem isn't limited to cancer. The well-intentioned HIPAA act of 1996, for example, included strict privacy controls that have turned into a problem for medical research generally.
