SAN FRANCISCO: In the late 1990s, Marty Tenenbaum was a hotshot e-commerce entrepreneur riding high on the dotcom boom when he noticed a lump on his body.
His doctor told him it was nothing, but when he finally had it removed, he learned he had melanoma, the deadliest form of skin cancer.
He beat the disease, but he never got over the sense of frustration he felt as he clawed his way through the maze of treatment options, clinical trials and research in search of a way to survive.
Now 67, Tenenbaum still believes he would not have made it if he hadn’t had personal connections at the National Cancer Institute who guided him toward cutting-edge experimental treatments that saved his life.
The experience convinced him that the key to advancing cancer treatment and research is forging connections on as large a scale as possible.
On Tuesday, he plans to launch a web application to bring together patients, physicians and scientists regardless of where they work, live or went to college in hopes that the so-called wisdom of the crowd can lead to the best therapies.
“I am just trying to pull together all the pieces that are needed to do a real, rational attack on cancer,” Tenenbaum says. The way to do that, he says, is to pull people out of their individual labs, offices and hospitals to collaborate in a way not possible before the Web and mobile technologies made it easy to pool vast amounts of information.
“How much of cancer could be turned into a manageable disease if we only knew what we knew?”
Tenenbaum is one of a growing number of supporters of the so-called open science movement, which calls for greater sharing of research and the lowering of institutional, financial, legal and geographical barriers to bringing the best minds and data together to solve science’s toughest problems.
In its fledgling form, the Cancer Commons app integrates the existing data on different forms of melanoma and the most promising experimental treatments. Patients or their doctors input how far the disease has progressed, where it started and whether tests have discovered any specific genetic mutations believed to contribute to the cancer’s spread.
From that information, the app tells patients what specific cancer “subtype” they have as determined by an expert panel. They also learn what drugs have shown the most promise in treating that specific form of the disease and where clinical trials are being conducted that could allow patients access to that treatment.
The app itself was built by CollabRx, Tenenbaum’s for-profit health care startup. It’s free for doctors and patients. The company would make money through pharmaceutical company sponsorships of different apps, though Cancer Commons does not endorse specific drugs.
The data itself generated by the Cancer Commons project will be free and available for anyone to use, Tenenbaum says.
At Harvard University’s Massachusetts General Hospital, Dr Keith Flaherty studies melanoma treatments and sees patients with the most advanced forms of the disease.
He volunteered to help lead the Cancer Commons melanoma project, which he says lets doctors and patients plug into a complex collection of data distilled into a simple set of treatment options.
Though Flaherty treats only melanoma, oncologists across the country are called on to treat all kinds of cancers. They don’t have time to troll through obscure journals or websites to become experts on every variation of the disease, Flaherty says.
An app like Cancer Commons lets those physicians plug into the knowledge of researchers like himself directly, he says.
“It’s to empower that doctor with the same information we have access to.” The hope is that patients also will be better able to advocate for themselves.
As the service expands, Tenenbaum also plans to make it possible for physicians and patients to add their own data on what has worked and what hasn’t. While researchers cannot rely on one person’s experience alone as a measure of success or failure, Flaherty says researchers could sift a large enough collection of anecdotes for leads.
The ease of sharing information among scientists and between non-scientists and professional researchers are two key developments made possible by the Internet that open science advocates say could speed discoveries.
“We have a chance at a new kind of digitally enabled collaboration,” says Joseph Jackson, organiser of the Open Science Summit at the University of California, Berkeley last summer. “But the hardest thing to do is change human behaviours and practices.”
Jackson is also working to help open a community biotech lab in Silicon Valley intended to provide space for ideas and research to take place outside traditional academic and corporate venues.
The San Francisco-based Science Commons project helps research institutions and scientific journals find ways to make valuable scientific data more widely available.
The group sees bright spots in their effort, such as the National Institutes of Health’s mandate that all NIH-funded research be made available free to the public within a year of being published.
But big challenges remain, both technological and in the culture of how science is done, says Alan Ruttenberg, principal scientist at Science Commons.
Ruttenberg focuses on solving the problem of “data integration”: How to put different scientific databases together to enable researchers to find new connections.
Part of that effort involves developing a common language for data that Ruttenberg hopes someday will make possible a search engine for science.
“We ought to be able to ask a scientific question about anything that’s been done and get a straight answer to that,” he says. — AP
++++ cancercommons.org opensciencesummit.com sciencecommons.org
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