“We'll have clinical data (including the stages of cancer development and both structured data and unstructured text from multiple-disciplinary clinical reviews), outcomes data, links to tissue banks, and we'll have genomics data.”
The data will be pulled from 165 acute-care providers and multiple secondary care systems in eight healthcare regions across the country and then normalized in the central database, Rashbass said. “Almost all of it is electronic. And it's all patient identifiable.”
In comparison, “the cancer registration in North America tends to be quite patchy,” Rashbass said.
According to a BBC report, the Department of Health in England will spend £100 million (about $157 million) for the genetic sequencing of 100,000 patients with cancer and rare diseases with the aim of accelerating personalized medicine throughout the country. Rashbass told the BBC he expects see genetic sequencing of cancers driving treatments within five years.
“I think the project is a great idea,” said Dr. Clifford Hudis, president of the American Society of Clinical Oncology. “It certainly caught our eye.”
In addition, Hudis said, “I think the assertion that U.S. registry system is suboptimal is fair.”
ASCO started work about three years ago on a centralized database and data analytics project to overcome the dissonance from data created by the many electronic health records in use in the U.S. The work is also inspired by a call from the Institute of Medicine to create rapid learning systems for healthcare, he said.
“It sounds like pie in the sky, but we've actually done it,” Hudis said. “We went ahead and using mostly open source software created this program called CancerLinQ. The goal is to establish a database system “one step above all of those EHRs” that can draw in and interpret the disparate data elements from them, he said.
“We've focused on breast cancer,” Hudis said. “We have 150,000 records already. We had our first demonstration at the National Press Club on March 22,” which was reprised at ASCO's annual meeting this month in Chicago.
But Hudis wouldn't hazard a guess when the system might be in widespread national use in the U.S. at a level comparable to that in England.
“All we've proven is that the pilot works,” Hudis said. “I would not argue the system we built will be the one we share and we use. We need to scale this thing up and there may be non-open source software that is worth the investment. ASCO is a quality driven, education resource for professionals. It's not a software company.”
Follow Joseph Conn on Twitter: @MHJConn