You can’t possibly achieve to your potential if you lack relevant information. In the US you’re legally entitled to all your health data.

Final entry in the series of fourteen foundation truths about Superpatients.

Good health systems will gladly give you whatever information you need to help understand your case. If that’s the case for you, great!

Watch 30 seconds of this – the link starts at 8:47 into the talk. Email subscribers, if you can’t see it, click here.

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In 2007 my survival from a near-fatal cancer was aided by information from my patient peers – information that will never warrant getting into a peer reviewed journal. But it was real.

Next in the series of fourteen foundation truths about Superpatients.

Many of the posts in this series have been about the nature of science, both its intellectual basis and the practical realities of how it’s practiced. When you’re at the fringe of medical knowledge, by definition you are messing around in a region where things are not mainstream, and you are hoping to find something that works – something unknown or not well-known. So it’s useful to understand the nature of reality, the nature of science, the nature of medical literature, and how knowledge flows (or doesn’t flow) to the point of need. Here’s a recap of those posts:

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Some people act like if there’s no evidence for something, there never will be, so there’s no hope. Nothing could be more unscientific. This is legitimate reason to take action.

Next in the series of fourteen foundation truths about Superpatients.

As medical science progressed from the 1800s to 1900s and beyond, there’s been a long trajectory of teaching young doctors to stick to science, not speculation. I’ve often heard of young doctors in training being scolded with “There’s no evidence for that!”

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This truth makes a lot of people uncomfortable, but it’s essential for superpatients to understand.

Next in the series of fourteen foundation truths about Superpatients.

After my cancer my earliest work in learning about medicine was about evidence-based medicine. Not long after, someone told me about the opposite: “eminence-based medicine,” in which people look not to evidence but to whoever is considered the leading authority.

That’s not a joke. It’s profoundly unscientific, but a reality. I’ll give you just two examples, one a century ago and one a few years ago, with the same bottom line:

Beware anyone who behaves arrogantly
if you ask a reasonable question.
Even a doctor. Even a good doctor.

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Next in the series of fourteen foundation truths about Superpatients.

Yesterday in principle 9 we covered how long it takes for scientific journals to get around to publishing knowledge, once it’s been created. Until then, the knowledge bears no fruit. And if you’re one of the suffering people whose outcome may depend on that knowledge, it’s a problem.

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