Principle 3: Don’t expect docs to know everything and others to know nothing.

Continuing the series started Friday – fourteen foundation truths to set the stage for the upcoming book Superpatients: Patients who extend science when medicine’s out of answers.

Principles #1 and #2 were about what science is – essential concepts for people who want to extend the frontier. Today we start addressing where to look for the best advice.

It’s a myth that doctors can be counted on
to know what’s dependable
and nobody else can.

Careful: I’ve seen people’s faces when I say things like this in speeches. I did not say doctors don’t know what they’re talking about. As I said the other day, healthcare today works better than ever – it’s why we have far more older people than a generation ago.

What I said is that it’s a mistake to expect docs to know everything valid, and it’s a mistake to think others can’t know it

• In “Doc Tom” Ferguson’s e-Patient White Paper (2007), he cited Dr. Donald Lindberg, director of the National Library of Medicine, as saying, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
  • Beware of skeptics! For two years, after speeches I had docs say “It can’t still be that bad.” So when I spoke at the NLM and got to meet Dr. Lindberg at dinner, I asked – and he said “Oh, it’s much worse now!”
  • Lesson: Well educated people can be out of date anyway. That’s the whole point. They can even be out of date about being out of date. If you have an unsolvable medical problem, that gives you reason to keep seeking!
• My doc, SPM co-founder Dr. Danny Sands, often says in speeches, “No one knows everything. Everyone knows something. All knowledge residesin networks.” It’s a quote from Ottawa philosopher Pierre Lévy. Not surprisingly, Sands recommended a patient network for me to join, for my own near-fatal cancer.
• My oncologist Dr. David McDermott (one of the best in the world for kidney cancer) welcomed my participation there. And he welcomed every single thought I brought to him from that community.
• Discussing my case years later in The BMJ, he said, “You were really sick, and I’m not sure you could have tolerated enough medicine to do the job if you hadn’t been so involved.” He was talking about exotic but useful information I got from the patient group.

I’m not saying every time you break an arm or need stitches for a cut, you should go googling. Lots of conditions are well understood. But Superpatients is about when medicine is out of answers: a condition where the docs have no answers, or where the usual answers don’t work. My point is that when that’s the case, it’s reasonable to keep looking. That’s what all these Superpatients did.

Next in the series: #4: Related myth: “Count on scientists to find what needs to be found. Nobody else could.”