Alexander Howard - Google+ - Open science will be a key part of the health data equation…

“To unlock the potential of health data for the public good, balancing health privacy with innovation will rely on improving informed consent. If the power of big data is to be applied to scientific inquiry in health care, unlocking genetic secrets, finding a cure for breast cancer or ‘preemptive health care,’ changes in scientific culture and technology will both need to occur.  One element of that change could include a health data commons. Another is open access in the research community. Dr. Stephen Friend, the founder of Sage Bionetworks, is one of the foremost advocates of what I think of as ‘open science.’ Earlier in his career, Dr. Friend was a senior vice president at Merck & Co., Inc., where he led the pharmaceutical company’s basic cancer research program.  In my newest interview, Dr. Friend explained what open science means to him and what he’s working on today:  Friend: ‘I use two different ways of referring to open science. One is related to who is involved in the project and the other is how they do their work.  For the most part, in biomedical research it’s almost as if in life it’s some giant MMPORG game, where you get designated as a biomedical researcher or a radiologist or patient. When you go to collect data or put a study together, there are unsaid rules about who can have access to what data. We feel as if it should be more about roles earned. If you are a citizen and you get to know your disease very well, then that should allow you to participate in building disease models in a certain way. That’s not because you’re a patient, but due to whatever ‘level’ you’ve achieved.  The other element of open science is how people do that work. This has to do with the fact that we live in a very closed information system. With regard to medicine, it’s probably as tight as China keeps the Internet, maybe tighter, or as tight as Tehran kept cell phone coverage during the Arab Spring. We need to build models to be able to get our hands on lots of data. We need to have many people participating in different roles, to extend that concept of open. We think the data that is out there is very precious, and it needs to be reused and it needs to be widely available.’  http://strata.oreilly.com/2012/09/open-science-health-data.html”