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Internet Commerce Pioneer Seeks to Crack Secretive Culture With Cancer Commons

Xconomy San Francisco — 

[Update 7:10 am 1/5/11] Cancer patients share their personal ups and downs all the time on Facebook and who knows how many Internet message boards. Now if one Silicon Valley entrepreneur gets his way, scientists and physicians will start sharing their experiences in treating cancer in ways that might actually help them come up with better personalized treatment strategies.

Jay “Marty” Tenenbaum, an e-commerce pioneer and cancer survivor, started down this road a couple years ago with a startup in Palo Alto, CA called CollabRx. Now he’s putting a new twist on this idea by using the company’s web-based apps and services to set up an open-source database, called Cancer Commons, to put all kinds of real-time data on how cancer patients with specific tumor types are responding to certain therapies.

For this kind of thing to catch on, it will have to demolish a culture in which researchers hold experimental data close to the vest until they can publish career-making scoops in peer-reviewed journals like Nature or the New England Journal of Medicine. That’s no easy thing to overcome, even if you make the coolest cancer research app ever for a smartphone or a tablet. Many top biologists could care less.

“There are people in life sciences who still get their e-mail read to them by someone,” Tenenbaum says. And while some biologists may change their technology tools quickly, changing the professional culture from one of opaqueness to transparency is the real challenge. “It’s just so deeply ingrained to be competitive. We all talk about collaboration, but it’s almost anathema,” he says.

Tenenbaum, 67, is setting out to make information technology tools that are so useful, so compelling, so irresistible that cancer physicians and researchers will have to use it to stay on the cutting edge of their fields—and to stay relevant to their patients. It’s an audacious dream, but Tenenbaum has been ahead of a very big curve once before. He was the founder and CEO of Enterprise Integration Technologies, the first company to conduct a commercial Internet transaction, in 1992.

By the late ’90s, Tenenbaum got a personal look at how the world of medicine used (and didn’t use) information technology. He was diagnosed with melanoma, a very difficult to treat and often deadly form of skin cancer. He was lucky—his first round of treatment was successful. But as scientists sequenced the genome and heralded the era of personalized medicine, he was still frustrated by how little of this data was being shared among peers to help develop better drugs in a faster way. There was nothing in biology that worked like an open-source community, which combine brainpower to make software.

Marty Tenenbaum

Marty Tenenbaum

CollabRx was founded in 2008 to develop web-based apps and services that could help connect the necessary players—doctors, researchers, patients, drugmakers. It has raised $5.5 million from angel investors, Tenenbaum says.

For the company, he spent a couple years knocking on doors trying to win more support from nonprofit foundations that support research into rare diseases, in hopes they would provide sustained financing. Essentially, Tenenbaum says he offered them a chance to apply some of their learnings from basic research in a new drug development model, without spending a lot of money on bricks and mortar lab space. No dice. “We needed to engage companies and academics who didn’t want to partner exclusively with CollabRx. They want to play on neutral turf. That’s why set up CancerCommons,” Tenenbaum says.

There’s nothing exclusive about the Cancer Commons—it’s a free and open repository that uses some of the apps and services developed by the company. The business model depends on cash from the pharmaceutical industry. “They have the money. They are interested in recruiting patients to trials, and getting doctors to try their drugs,” Tenenbaum says. “They can sponsor a commons or sponsor apps to get the word out in a way that’s acceptable to the FDA,” he says, noting that the commons wouldn’t endorse any one product.

Tenenbaum and colleagues described the vision of the Cancer Commons in a white paper in October, and the site went live last month. The idea is to get physicians to move beyond testing their hypotheses in clinical trials. Those trials typically enroll large numbers of cancer patients with different tumor types, randomly assigning them to one treatment or another, and following them up for months or years to see which worked better—providing the gold standard of medical evidence. Instead of sticking to that expensive and time-consuming model, Cancer Commons wants physicians to think of each patient as a source of valuable experimental data, over time. Cancer physicians already try lots of new treatment combos on patients all the time outside the traditional clinical trials—and no one really captures data on how those individual patients and their unique tumor types respond to certain treatments.

While many academics scoff at looking at anecdotal cases, writing them off as statistical anomalies, Tenenbaum says there could be power in those anecdotal “N of 1” experiments if physicians were able to pool this data, where they might see patterns emerge. It’s also possible that highly motivated patients—people like Tenenbaum himself—might look at the data and see a good response for a patient with a certain type of melanoma, and urge their doctor to see if it might work for their form of cancer.

The growing Internet savvy, and fierce motivation of cancer patients, is clearly an emerging force that Tenenbaum is betting will drive the adoption of the Cancer Commons. “Cancer patients are the ones with their hair on fire. They want their lives saved,” Tenenbaum says.

[Update: Added members of scientific advisory board] Some big name scientists have lined up as early supporters. Nobel Laureate Lee Hartwell is on the scientific advisory board of CollabRx, while Donald Kennedy, the president emeritus of Stanford University; Doug Blayney, the immediate past president of the American Society of Clinical Oncology; and Frank McCormick, a UC San Francisco researcher and the incoming president of the American Association for Cancer Research, have become scientific advisors to  Cancer Commons. A couple of melanoma experts from Massachusetts General Hospital—David Fisher and Keith Flaherty—have joined the original Melanoma Commons. If this effort is successful, the plan will be to expand into other forms of cancer, Tenenbaum says.

Melanoma happens to be a hot place to start this kind of movement. An experimental treatment from Berkeley, CA-based Plexxikon and Roche has generated some positive buzz among patients with a mutant tumor target known as B-raf. Exciting as it is, many patients in trials are now relapsing after their initial responses, Tenenbaum says. Could there be molecular clues in samples from individual patients that suggest why certain people relapse, or who is more likely to relapse quickly? That’s the kind of information Tenenbaum wants to see dumped into the database, and which physicians and researchers could use to hone treatment strategies in a much faster way than simply waiting for the next big scientific paper or conference.

“We see Cancer Commons as the harbinger of a new patient-centric paradigm for translational medicine, in which every patient receives personalized therapy based upon the best available science, and researchers continuously test and refine their models of cancer biology and therapeutics based on the resulting clinical responses,” Tenenbaum and colleagues wrote in their October white paper.

That may be how you need to talk to entice a recalcitrant scientific audience, but when I spoke to Tenenbaum just before Christmas, he summed it up in a way that’s easier for patients to digest.

“I’m trying to get up every morning and show that information is the lifeblood for curing cancer,” Tenenbaum says.

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3 responses to “Internet Commerce Pioneer Seeks to Crack Secretive Culture With Cancer Commons”

  1. Roger says:

    I have just been diagnosed with extra nodal marginal zone lymphoma. Apparently it is a rare sub-species of lymphoma. I have a tumor next to my speen and a tumor behind my eye.

  2. Joe Case says:

    Hi Marty,
    Great work, Cancer Commons ,