Cancer Publications Sadly Miss the Mark

Good news! I found this publication available from the National Cancer Institute:  Get Relief From Cancer Pain

Sounds helpful, right? Giving us up to date suggestions? The latest information, right?

I mean after all, it's from the National Cancer Institute. But the thing is . . not really.

The publication, and it's generous to even call it that, contains almost nothing of value; is written on about a third grade level and passes on next to nothing aside from generalizations.

I went back to looking at the information abstract. I wondered how they viewed what they were distributing.

Audience:  Low Literacy, Cancer Patient
An easy-to-read brochure to inform patients that medicine and other treatments almost always can relieve cancer pain. The patient is encouraged to talk to his or her doctor or nurse as soon as cancer pain begins. 5/1994 Last Printed:  5/1/1994

In essence what they said in those two sentences is what the brochure contained in it's entirety. Bla bla bla.

So after I had no luck finding anything specified for those of us who want more information than we could get from our babysitter, but thinking this sad condition about their literature surely can't be the case across the board, I picked out other publications at random to check for how informative and up to date they were.

"Eating Hints for Cancer Patients: Before, During and After Treatment was last published 7/1/1997. Please don't make me describe it. We're supposed to eat well. Ahem.

The most recent I found - published last year- Managing Radiation Therapy Side Effects: What To Do When You Feel Weak or Tired (Fatigue) was a one page sheet And although it is about twenty times improved over what I'd seem previously it contained some gems of advice like like: be active if you can and rest if you need to.

I think my neighbor who's six years old may have polled her class to get those suggestions.

And o.k. fine, I'd like to have the NCI spend most of it's income on research so we can kick cancer to the curb once and for all but in the meantime we all have to deal with sharing what we know. And from what I see here, reaching out to share helpful information with patients has really gotten the short straw lately with the National Cancer Institute.

This isn't to say there is not good information out there. And some of it may be available from the NCI.

But the average patient should not have to be a research librarian to find helpful, timely and intelligent information when they need it. That means when they are in pain. Or when they are not able to eat right. Or when they are feeling exhausted from treatments.

Those are the times that our researching skills may be the worst. And when getting information winds up being hardest.

So what should organizations do with their outdated, unwieldy and just plain dumb information?

After tossing a good portion of what they've got from the 1900s in the dustbin of the past, I suggest that they Develop - Expand - Multiply - Organize - Update and Share it!

Talk to us like real people. Give us more then we need, not less. Assume we want suggestions and details and cold hard facts too. Know that we want both the practical and the data. We're complex people with complex illnesses and challenging lives to live. If you want to help us don't gloss over things or write paragraphs with lots of words that say nothing.

And for heaven's sake don't talk down to us. Just because we are battling cancer does not mean we checked our brains at the door.