This article is wonderful as an example of the new, and long ignored, emphasis on the patient. If you read it with an eye for how the patient role is perceived, it’s pretty ground-breaking for the natural inclusion of patients as central to the equation, with indications of how that rankles the establishment.

Some excerpts:

The second coming of aspirin is considered one of the triumphs of contemporary medical research. But to Brin, who spoke of the drug in a talk at the Parkinson’s Institute last August, the story offers a different sort of lesson—one drawn from that period after the drug was introduced but before the link to heart disease was established. During those decades, Brin notes, surely “many millions or hundreds of millions of people who took aspirin had a variety of subsequent health benefits.” But the association with aspirin was overlooked, because nobody was watching the patients. “All that data was lost,” Brin said.
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But a problem emerges as the data in a basket become less uniform. This was the focus of much of Brin’s work at Stanford, where he published several papers on the subject. One, from 1997, argued that given the right algorithms, meaningful associations can be drawn from all sorts of unconventional baskets—”student enrollment in classes, word occurrence in text documents, users’ visits of Web pages, and many more.” It’s not a stretch to say that our experiences as patients might conceivably be the next item on the list.
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Mark Hallett, chief of the Human Motor Control section at the National Institute of Neurological Disorders and Stroke, saw Langston present his results at a recent conference and came away very impressed. “The quality of the data is probably not as good as it could be, since it’s provided by the patient,” he says. “But it’s an impressive research tool. It sounds like it’d be useful to generate new hypotheses as opposed to prove anything.”
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And I find it telling that the nexus of Brin and Grove is MJFF, where their different approaches, and financial heft, merge:

Grove disagrees somewhat with Brin’s emphasis on patterns over hypothesis. “You have to be looking for something,” he says. But the two compare notes on the disease from time to time; both are enthusiastic and active investors in the Michael J. Fox Foundation. (Grove is even known to show up on the online discussion forums.)

The notion that individuals are better equipped with more information and that our experiences not only matter but are essential to progress is a powerful message in and of itself. I like the last paragraph:

“But in some cases, undoubtedly, we may find ourselves in a circumstance like Brin’s, with an elevated risk for a disease with no cure. So we’ll exercise more, start eating differently, and do whatever else we can think of while we wait for science to catch up. In that way, Brin’s story isn’t just a billionaire’s tale. It’s everyone’s.”

It's kind of rewarding to see in print some sort of affirmation that we haven't been crazy all these years to be thinking that the science needs to catch up to what patients already know. Power to the patients – and to those in power who listen to us!