Tuesday, October 7, 2014

The Lives And Times Of Our Ideas

Dear Michele:
 
About your September 09 blog post where you make the case that we should classify cerebral palsy as one of a handful of conditions that may result from an Early Developmental Brain Injury (EDBI)...

I say bravo. Thank you for:
  1. bringing the issue to light*;
  2. challenging your readers in longer-than-140-characters form to use their noodles;
  3. questioning the status quo and continuing to push to make things better.
I think you've hit on an important issue. And I'll be on the lookout for what happens next. Will AACPDM pick up on it? Will your proposal make its way to a decision? If so, will we be able to look back years from now on said decision and judge it to have been effective? That last would be no small accomplishment.

Effective decisions necessarily take into account the effort involved [Is the time, trouble, expense, etc. involved in making it greater than what the decision merits?], the timing [Can it be made in an acceptable time frame?], the yield [Will the decision be faithfully and adequately executed?] -- not to mention quality considerations. [A high-quality decision is based on relevant facts, assesses risks as accurately as possible, and rigorously debates alternatives.]

I'm not sure our community is equipped to tackle all that. At minimum I believe we'd have to develop new capabilities and means, including ways to involve parents (think "patient engagement," "patient-centeredness") like the ones who've been commenting on your post. Before we dive in and decide -- haphazardly -- things should be thought through.

Or maybe not. 


You stressed the importance of information pipelines. I understand where you're coming from, but I also don't believe that knowledge really flows in pipelines like we've always supposed. Knowledge is more a property of (messy) networks.

A nice upshot of that is that you don't necessarily have to wait for somebody else's seal of approval on this matter. If your framework helps you organize and guide your thoughts and actions as they relate to caring for your daughter -- go ahead and use it. Write more about it. Tell others how it works. Be selective in your use of the term "cerebral palsy." Trust that others in your network will follow suit, i.e., that your framework will catch on organically. I'll try to be more careful myself.

EDBI Daily Living is a heck of a lot clunkier than your current title, but maybe you should consider it or something like it?

Keeler


*I'd be hard-pressed to say how or when the term "cerebral palsy" has helped my daughter in her lifetime -- which began, coincidentally, on September 09. [2001]

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