Impact on Research – Nicolas


Nicholas explains that patients have “experience by living the knowledge”. They know their disease through experience.


Yeah. It’s very difficult and I think it just didn’t happen on its own. The basic premise, as I say always, the basic premise is that patients have experience living the knowledge. I mean knowledge — no, I mean knowledge about their disease through experience. They’ve experienced managing it. They’ve experienced the symptoms, whatever, so they have that. And that’s very valuable, I mean, a researcher who’s never had kidney disease or whatever disease, doesn’t have that. They have a very theoretical view of knowledge. A very theoretical knowledge about their disease and very advanced. I mean, obviously they’re, especially if they’re researchers, they’re very on the cusp of what we know. So they’re really on the boundary of what is known about the disease.

But yet, they’re very aware that that’s a limited position. They don’t know everything and they can’t solve everything, so. But, so, the key to the partnership is that. That they bring this sort of leading edge knowledge to a group of people about a disease, about a certain problem. And patients bring in what it’s like to live in that re… So that, in that sense, it can be a partnership, where both parties bring something to the table.

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