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.

Monday, August 11, 2014

Let's Challenge. Let's Think. Let's Get Lean.

The annual CDC ATSDR ALS Registry annual meeting will be webstreamed starting on Wednesday.

https://wwwn.cdc.gov/als/Default.aspx

That's a big deal.  In the past it has been a secret until the report is published many months after the meeting.  This year we get to watch.  That's a baby step forward to some transparency.

There is a lot of serious business to discuss with this project.  We hope that those invited to be at the table and interact will be prepared and willing to ask some important questions.

Let's get the business arrangements out in the open up front.  Based on past meetings, the participants are largely employed on the project, either by ATSDR or large contractors on the project.  There have been few, if any, voices without such ties in the room.  Any patient representatives have been chosen by ALSA and MDA, both large, paid contractors on the project.  How about some disclosures?

Let's have some serious discussions about "the report," and what it says and what it didn't say.  We trust that participants will have read Stephen Finger's op-ed by now.  Let's talk about his observations on the quantum leap that was implied to the public about the completeness of the data in that report.

And will we ever have incidence data from this project?

And was there a communications plan beyond "the report" to talk about the correct numbers correctly?

And was the passive surveillance as complete as we thought it would be?

Let's get businesslike about the budget.  Last May we learned from the ALSA presentation at their Advocacy Conference that the amount requested for the Registry was simply the amount that the sponsoring legislators thought they could raise.  It was not built from the ground up based on a business case.  The core mission of the project has simply been overfunded.  Some may think that's great.  Others think that because a government agency has a lot of money to spend doesn't mean that it is the best place to do things.  Please have some serious challenges of the scope creep on this project.  And before the next dime is spent outside of the core mission of ALS surveillance, let's have a plan to evaluate effectiveness of every one of these side ventures via meaningful success metrics.

Let's challenge every added bell or whistle by asking, "Is this the best place to do that?"  Clinical trial matching?  Storing biosamples?  Continuing education?  Clinic finder?  Additional research project funding?  Microsites?  If it's not, let's not!  We're throwing government money at problems rather than designing and executing solutions strategically and effectively.

Let's stop being blinded by the wrong project metrics.  The number of emails sent regarding a small subset of enrolling clinical trials says nothing of the effectiveness of that tool.  The increase in uptake on risk-factor surveys means nothing if the overall self-enrollment is down.  Let's look at candid and pertinent project metrics.  And when something goes plop, let's be honest.

This project could use an annual meeting with more of a spirit of Kaizen than the love-fest that it has been in the past.  Let's challenge.  Let's think.  Let's get lean.

And that's hard to do in an overfunded government project.





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