What Would Google Do_ - Jeff Jarvis [108]
Now apply this attitude—this ethic of openness, standards, and hacking—not just to medical care but also to medical research. How much of pharmaceutical work would benefit if more data were open and more of the work were open-source? We’ve heard the arguments: The cost of developing drugs is astounding and unless companies that create them can fully own the information and the results and recoup the expense, they won’t discover the next pill that could save your life. I don’t disagree; I respect their work, their business needs, and their intellectual property. Still, we need more discussion on the impact openness could have on medical research. Would the government need to sponsor more research so the results would be open? If universities, governments, and doctors shared their data in standard, open, and free databases—with patients encouraged to add their knowledge and experience—would that have a greater benefit than the current, less-transparent structure? If more research were made open, what drugs and businesses could result? Who could organize that knowledge for us? Google has opened up most human knowledge today—any that is digital and searchable—so I’m confident it could do the same with medical knowledge. Like Searls, I hope to live to see that day.
Medicine is still too much a priesthood of closed knowledge, at least as it relates to patients. In 2008, I sat with doctors from around the world at a conference lunch as they clucked, scowled, and shook their heads and shared stories of their patients going to the internet and coming back with incomplete or mistaken information. These doctors wished that their patients hadn’t done their own research and that the doctors, as experts, could have kept control of access to information. Well, too late. I advised them to curate good information for their patients. What if they created resource sites? What if they blogged to keep patients informed and up-to-date—and also linked themselves with a larger community of doctors working on the same conditions? If their patients got more of the right information, would that make them better patients? A bit grudgingly, the doctors accepted the notion. I’ve debated my prescriptions and treatments for afib with my doctor and what I really want from him is data and information about my choices to make better decisions together. I’m no citizen cardiologist, but it is my heart.
I want more information to be made public about doctors as well. It is possible to get survival rates for hospitals performing certain procedures (though sadly, keeping these scores sometimes disincentivizes institutions from taking hard cases). Patients rate doctors—like teachers and plumbers—at various online services, but they’re not terribly helpful because I don’t know anything about the people leaving comments. I’d at least like to get a list of all the conditions a doctor treats and how often so I can pick the most experienced specialist. If a Googley restaurant would tell me how many diners ordered the crab cakes, a Googley doctor should tell me how often she has treated afib. I would also be impressed if the doctor treating me had written about the condition online. I’d be doubly impressed if I saw other doctors linking to her.
The changes in medicine we’ve touched on all relate to information: opening it up, sharing it, organizing it, analyzing it,