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, December 9, 2013

Patients, Caregivers, and Families Have Questions. You Have Experts.

My, how they have questions.  My, how you have experts.

A reported 950 people participated in the big ALS MND symposium in Milan last week.  A vast majority of them were experts in some area of ALS research or care.  Almost of them were there as part of their jobs.

The "Ask the Experts" session that was held on Wednesday was similar to that held in past years.  We're not sure who was in the room.  Three experts talked and answered a few questions.  It was interesting, but it was hardly an inviting, inclusive way to get a lot of patient and caregiver questions to the experts.

How about crowdsourcing some questions and answers next year?  Six weeks before the symposium, reach far and wide to invite PALS, CALS, and families to ask their questions.  Encourage organizations to let their PALS, CALS, and families know about an amazing opportunity.  Gather their questions.  Some will be easy, some will be difficult, some may be uncomfortable, but all will be valuable.

Next invite every one of your expert presenters to have a crack at answering the questions in writing before the symposium begins.  Multiple answers to a question would be grand.  If experts differ on answers, that would actually an interesting dimension that has been been missing from the fight against ALS.  Let's swarm on those questions, experts.  If some experts don't want to answer questions, that would be a bit revealing, too, wouldn't it?

Finally, at the big conference, a panel of experts could discuss the themes and the responses.  And please retain the written content of the questions and responses in a public place.  That will help all of the families who feel like they are reinventing wheels every day in their fights against ALS.

This format would permit every question to be asked and answered.  It would draw in more PALS and CALS and experts into a direct conversation that they are not having today.

It would be a small step toward patient-centricity at an important symposium that seems to be tone-deaf to the concept today.  It might also enlighten some of the so-called experts that the real experts in ALS are those who are living the nightmare every day.


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