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, March 3, 2015

Welcome to Hotel Inefficiency

Welcome to our hotel.

The other desk across the lobby told you that your room isn't ready?  We'll be so glad to help.

First leave your information with Albert here.  He can inform you as soon as a room is ready, but he only knows about rooms on the fifth floor.  


Next leave your information again with Alice on the right.  She can let you know when some of the rooms  on the tenth floor are ready, and she also has access to information on a couple of rooms on the fifth floor that Albert has, too.

You say you have a room preference for a king bed?  Oh, that's too bad  We'll let you figure all that out when a room is ready.  You can decide with the other desk if you don't want a room then.  

Oh, don't expect Albert and Alice to talk to each other.  Their jobs are funded in different departments'  budgets and you know how that goes.

And the other desk across the lobby will know the status of all the rooms in the hotel.  You'll need to check in with them persistently to find the rooms we don't know about, and they can't call or email you.  They just know and you need to keep checking with them.

Enjoy the experience of trying to find a room.  We know you're tired and anxious, but it's really not about the guest here.  It's about our systems and incredibly large budgets to develop systems that are all about Albert and Alice.

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What brought this on?  This wacky hotel is a lot like what people with ALS endure to find clinical trials.

First we had the national ALS Registry with its archaic clinical-trial "matching" tool that has a small subset of enrolling clinical trials.

Now we learn of another government registry being kicked off https://www.rarediseasesnetwork.org/CREATE/index.htm

So we'll have both Albert and Alice and still have to constantly go back to the main hotel desk at clinicaltrials.gov (not to mention all of the donor funded clinical trial sites).

Any one of these individually isn't very good.  Together they are a model of expensive inefficiency.

Welcome to the world of ALS.  It's about incredibly large budgets to develop systems that are all about Albert and Alice.




1 comment:

  1. See the registration form.

    Are ALS Association, MDA, and ALS Recovery Fund going to inform PALS of available clinical trials? That's not something they do very much today.

    Or are they going to use this information for something else?

    https://www.rarediseasesnetwork.org/rdnwebapp/registry/RDCRNRegistrationForm.aspx?OwnerId=9800&DiseaseType=311&AcceptInd=1

    ReplyDelete