Two honors this summer have burnished the reputation of Seattle scientist Stephen Friend for his pursuit of what is called open science. On top of White House honors in June, he received a grant last week that adds to his credibility as someone trying to change the culture. The phrase “open science” has dozens of meanings, but in Friend’s case it is primarily about opening up data that medical researchers once kept hidden from each other. He calls it a “geek sandbox.”
Just a few days ago, he won a $1.7 million grant from the Robert Wood Johnson Foundation. The money goes to a project called Bridge, more about that later.
Friend has spent decades being an academic (at Fred Hutchinson Cancer Research Center) and working at the giant pharmaceutical company, Merck, but now he’s director of his own pioneering effort called Sage Bionetworks.
When he explains this passion for open science, he talks from his experience. He talks about trying to make data work for patients and not just to help scientists with tenure and startup companies.  He titled one of his speeches: “Dreaming of tenure and IPOs while patients die,” at a conference in 2012.
He speaks critically of the “medical industrial complex” getting in the way of helping patients. He’s building tools that are designed to let researchers share and network with patients to try to help solve some puzzles about chronic diseases. Already, they’ve had some success with modeling which women with breast cancer might respond best to certain medicines.
Friend was honored at the White House Office of Science and Technology in June as one of the leaders in open science. He announced new projects on Alzheimer’s disease and rheumatoid arthritis that may help predict which patients will respond to certain medications. Sage Bio’s work on modeling risk for breast-cancer patients was called a “geek sandbox” by one writer, who said the results (a new model) are less important than the building of a system where researchers collaborate and compete at the same time.
Friend’s particular passion is also a place where two Seattle strengths overlap, like Venn diagrams. Seattle is strong in software, everybody takes that for granted. Besides the behemoth of Microsoft, Seattle has hundreds of other companies exploring how to use algorithms to uncover signal patterns in the noise of data.  Among the newest of those companies are Socrata and Tableau Software. Seattle is also strong in genomics and proteomics, and the study of diseases as complex systems that require millions and millions of data points to begin to understand. Software development is ahead of medicine in seeing the wisdom of open source design, he points out.
Friend believes that allowing medical researchers to see each other’s terabytes of data will allow patterns to emerge that spell answers for some diseases. In fact, he believes the institutions and the foundations that donate money must adhere to five concepts – including sharing with patients – or they will fail at finding answers for chronic diseases.
In a video discussion with the patient-advocacy group, Faster Cures, he listed these five rules for success.
1. Make use of massive genomics, proteomics and other “omics” data
2. Put that in the cloud so thousands can access it from anywhere and doesn’t use your server space.
3. Use network modeling of disease.
4. Give patients the ability to send you data (for example, measuring their health using a cell phone)
5. Use open social media to involve patients and share with other researchers instantly.
Friend’s colleague, Thea Norman, talked to us about coming to Seattle to join him and how she will help leverage the RWJF money to make patients bigger partners in research. Bridge is designed to help groups of patients donate their own medical data in a way that provides a basis for discovery for researchers. For example, melanoma patients have already donated photographs of their own skin abnormalities to help build a database that scientists can scan.
“He’s visionary and inspiring,” she explained, of her decision to leave a job in San Diego and move to Seattle to work with Friend. Her title is director of strategic development.
“We get the cream of the crop of software engineers,” she explained of the special strengths that Seattle brings to the open science work. Some of what Bridge will do is build the web-based platform where patients can volunteer their data, or read and download consent information. (John Wilbanks, also at Sage, is one of the designers of what is called Portable Legal Consent.)
The next blog in this series will explore some of the patient advocacy that is driving open science. As Friend says, patients are the key to the enormous energy needed for change.