ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, August 8, 2017

That Looked A Lot Like The Basset 500

Anyone whose life is blessed with a basset hound knows about the Basset 500.  Occasionally hounds
will break into running gleeful circles.  Sometimes they do big circles outside in the yard.  Sometimes they zoom around a circular floor plan inside.  It's exercise  They have fun.  They get nowhere except right back where they started.

Last week my hound was in the office with me when we watched the CDC ALS Registry annual meeting.  She could relate to what happened.

Every year the paid contractors (ALSA, MDA, and now Les Turner ALS Foundation) come to the meeting without any data to measure their effectiveness.

Every year the group ponders how to increase Registry self-enrollment.  There is lots of discussion of things to do that might increase people with ALS contributing their data.

Every year one of the people with ALS invited to the meeting gives the common-sense advice that you have to measure and you have to set goals.  There are nods, but nobody discusses specific metric goals because nobody establishes the pertinent metrics and nobody comes prepared with a measure of the actual performance.

Every year the meeting concludes with no goals, no targets.

My prediction for 2018:

  • The contractors will come to the meeting without any data that measure their effectiveness. 
  • The government project leaders will insist on calling these paid contractors "partners" again (clouding the true relationship and a need for accountability for paid work).  
  • There will be discussion about all the stuff you can do to increase self-enrollment.  
  • A common-sense person (not paid to work on the project) will suggest that they need to set goals and measure.
  • They'll talk more about stuff.
  • The paid facilitator will never bring them back to the idea of measurable goals.   
  • They will leave for another year.

Every year they get lots of exercise and get nowhere except right back where they started.

The dog wants to know how she can get paid half a mil a year to run in circles.


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