The swan does not have to be red, or even be a swan.
Swans are white.
If you go looking for a swan, you are looking for a big white bird with a long neck that swims gracefully in the ponds of the Gardens of Versailles.
In Nassim Taleb’s story about Black Swans:
Suddenly a black swan appears.
Everybody freaks out.
No one predicted it. Swans are always white.
And the black swan changes everything.
Taleb’s black swan is widely discussed in reference to unexpected events that have a negative impact on the economy; a mis-reading of Taleb, who says that the black swans can bring positive or negative results, to any field of human endeavour, not just finance. But because Black Swan is often used as a negative and as relating to the economy, we have to move on to a different color of swan.
A red swan, for example. It could be a red swan. It does not have to be red, nor does it have to be a swan. We are calling it a red swan because swans are white.
And we want Parkinson’s scientists to pay attention to the red swan. They study the 50,000 white swans, and exclude the red swan because it is an aberration, an outlier; statistical static that falls well within the mathematical margin of error, and can be safely ignored.
When AMGEN said GDNF did not work, they ignored the guy who was 80% improved over several years. “A placebo effect”, they pleaded. Yeah, sure, a placebo effect that lasts for years and that removes 80% of the disability and the pain. But that’s one guy. What do you expect us to do? Treat different patients differently? We need a treatment that the nurse can give to everybody three times a day, with a little paper cup of water.
The red swans are not representative of the disease. They are aberrations. Research grants are for the greatest healthiness of the greatest number. It’s democratic. Swans are vastly majority white. That’s the big market for the pills.
In medicine, you are not likely to get a treatment approved if it helps only a third of the patients. Throw the drug out – it’s no good for two-thirds of the people.
If there are 1,000 PWP in a clinical study, and 999 of them report increased drooling and tremors that just don’t stop; but the one remaining Parkie recovers immediately and then wins all the Gold Medals in every sport in the Olympics, I say go check out THAT person. What is going on out there? Whassup with that?
And that is your red swan.
Don’t be silly, we don’t give research grants to red swans. Swans are white.
In Wikipedia-style: Rare events and discoveries play a massive role in history, science, finance and technology. Scientific methods do not always help us to be ready for a red swan, because of the very nature of small probabilities and rare examples.
Psychological biases make people individually and collectively blind to uncertainty and unaware of the massive role of the rare event in historical affairs.
Such events, considered extreme outliers, collectively play vastly larger roles than regular occurrences.
Andy Grove, creator of Intel (remember when every computer had a sticker on it saying “Intel inside”? This is the guy.) made a speech about Parkinson’s research a few years ago. It used to be on-line at PAN but so far this afternoon I am in the wrong archives and did not find it. He was talking about the outlier, the rare one, the red swan. What is the red one doing that the white ones are not?
Hey Charlie, there’s somebody called Boann over at Neurotalk who stopped taking Mirapex.
Looks like I picked the wrong week to invest heavily in Pharma.

There’s somebody called Reverett123, conducts all these white mice experiments with no mice – they test compounds on themselves instead. Should we check it out?
Are you crazy? Need a billion dollars plus ten years to get it as far as the FDA, who will turn it down if it only saves a third of the wounded. Statistical outlier. Freak case.

…and then there this Aunt Bean with a fava bean farm, and others are dancing and many kinds of exercise… and some herbs…. And some spiritual life-rafts…
Quote from The Economist interview with Andy Groves:
Another business he believes to be ripe for disruption is health care. He complains that the industry seems to innovate much too slowly. The lack of proper electronic medical records and smart “clinical decision systems” bothers him, as does the slow-moving, bureaucratic nature of clinical trials. .. the time it takes for an experiment to proceed from hypothesis to results —around 18 months in chipmaking, but 10-20 years in medicine.
… he shocked the gathered bigwigs by declaring that hoarding patents was an abuse of intellectual-property rights...He insists that firms must use their patents or lose them: “You can’t just sit on your *** and give everyone the finger.”
http://www.economist.com/node/14299624