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, January 5, 2015

It's 2015. We Fight Smart. Usually.

Everything we fight these days benefits from data.  And our access to data gets better every year.

When the Colts battle the Broncos on Sunday, I'll have read a lot about playoff statistics that may affect the outcome.  Sports statisticians thrive these days and make us smarter fans.

When I get my electric bill, I'll have data to help me figure out how to fight the high cost of the low temperatures here.  Smarter meters and their data let customers be a lot smarter.

When I do my laundry and fight stains, I have an appliance that helps smarten up the water usage and cycles to match the load, and it's all based on data that washing machine gathers.

And then there's ALS.  It's a life-and-death fight for thousands of people, yet we fail to capture and share data.  And the ALS data situation seems to be getting less smart every day.

People with ALS try things.  They all do.  Some things are pretty simple while others are risky and expensive.  In 1996, my 78-year-old mother read that vitamin E might help with ALS. She tried it.  Little did she know that Lou Gehrig had tried it in 1939 with the same results that she was about to have. It made no difference.  Neither Lou nor Mom left the breadcrumbs to help the next person make a smarter decision about vitamin E.  The tools just weren't there.  But the tools are there today.

ALS has a cruel way of generating a new crop of rookies every year, and today they are stuck with anecdotes and trusted advisors (some more worthy than others) to help them make decisions.  They get more real data about their football teams or electric usage than they do about what they might try to fight ALS.

PatientsLikeMe.com offers a nice framework for people with ALS to track their individual case trajectories and interventions.  It can supply others with some reference points when they try to make smarter decisions.  If patients would maintain data profiles there, it would provide those bread crumbs for the next person.

Some neurologists and ALS organizations have discouraged people with ALS from participating there.  That puzzles me.  Patients will try things with or without data.  Please, all, let the data speak.  We're not talking about rigorous clinical trial data, but we're talking about clues and bread crumbs that will help every person with ALS and caregiver be smarter.

Privacy need not be an issue.  You can use a profile name like "Lefty" even if you're a right-handed ballerina.  You can be as vague about your identity as you please.  You don't have to participate in the Forum (or any other forum) if you don't want to.  Today, there is a senseless waste of information among people who participate on message boards or social media with anecdotes and don't provide orderly data about their disease trajectories before and after intervention.

And anyone promoting an experimental protocol or other intervention owes it to everyone to ask all people trying it to post their data publicly and completely.  Yes, let the data speak.

Data waste is not smart.  We need to help every person with ALS fight smarter.  That requires data.  It's 2015.

1 comment:

  1. That's what you get when you give what fundamentally is an engineering problem to the hands of neurologists.

    ReplyDelete