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, September 26, 2016

Feed the Monster

I've been going to (yes, actually going to) Walks to Defeat (nee D'Feet) ALS for 15 years.

Something has bothered me for 12 years.

ALS leaves a large, terrible wake of loved ones behind every time someone dies from the disease, and the deaths are constant.  Why doesn't the attendance at walks grow at a constant pace every year to reflect that wake?  Why isn't the crowd that raises awareness and makes noise in communities huge by now?  It seems like the size of the crowd remains pretty flat year after year.  It's large, and that's wonderful, but where is everyone with loved ones left behind who used to come to the walk three or four or five or more years ago?

Every not-for-profit needs to figure out a revenue machine that will keep it sustainable.  I get that.  The ALS revenue machine is almost too easy.  There are thousands of newly diagnosed people with ALS every year and their families and friends and coworkers and neighbors want to help.  Enter the multi-level marketing of the walk revenue machine, and those who want to help can donate, and they do.  The constant stream of new diagnoses supplies many new donors and old ones fade away a few years after the funerals.

And getting people to actually show up for the walk itself isn't even a priority for some chapters.  It's all about the revenue machine, and the relentless disease is the fuel that feeds it.

Some people think I'm crazy for going back year after year after year.  I'm not.  If more people did that, we would have more people who see the problem of feeding the monster without changing the fight.  You see, the talk of achievements is recycled year after year.  It doesn't take Einstein to see what has happened.

Saturday, September 17, 2016

Meet Elizabeth Cosby

Today I have the privilege of delivering an Ignite! talk at Stanford University's MedicineX.  I appreciate the opportunity to present a message about ALS and clinical research to so many outstanding people whose mission is to rebel and improve medicine.  Thank you, #medx .

The full paper on this project will be published on this blog before October 1.

The project results will also be presented in a poster presentation at the ALS MND Symposium in December.


The day Mom was diagnosed with ALS, it hit us from out of the blue. There is one thing I remember vividly about that day.
The neurologist pulled me aside and said, ”Get her to someone doing clinical trials because the only thing the least bit “promising” would be experimental.
We were fortunate.
We had an action plan on day 1.

You see, the ice didn’t cure ALS.
There is no effective treatment.
It’s a difficult disease.

That’s EXACTLY why clinical trials are so important to those with ALS.
1. They are a legit Hail Mary
2. They advance the science for others.
You who do clinical research RECRUIT for trials. 

But wait.  You are RECRUITING.  They are SHOPPING.
People looking for a clinical trial are doing what we all do every day when we look for a new car or a great, affordable restaurant in Palo Alto.
They do not seek to be recruited.
They seek the best trials for them.
Businesses use Customer Journey Maps to show the complexity their customers experience to do business with them.
Complexity is never good in customer service. They journey should be easy for the customer.
There are some basic elements of most Customer Journey Maps –
Awareness, Research, Purchase, OOBE (WOW) Disney Apple.
Lets back up to Awareness.  A lot of money is spent on making people aware of clinical trials. Great.
Based on personal experience, I suspect that we are losing people who are already aware of clinical trials in the Research part of their journey, and the problem is poor customer service.
Am I all wet? How could I put some data behind my suspicion?  Meet our secret shopper, Elizabeth Cosby.
Elizabeth is a fictitious woman who came to life a few months ago in a new gmail account.  Elizabeth has a fictitious aunt who was recently diagnosed with ALS. 
Elizabeth tried to help her find a clinical trial.
The first part of the journey was to find all recruiting, interventional ALS trials.
Elizabeth wanted to organize the information for comparison shopping.
That was terribly time-consuming.
Finally on the evening of April 4, Elizabeth emailed inquiries about 39 trials.
There were 5 simple questions in each email – things like is it still enrolling, time commitment, reimbursement…
The first response came back that very evening.  It answered all the questions and was encouraging. Was I all wet about poor customer service?
Unfortunately time told the tale.

Of the 39 trials, Elizabeth got absolutely no response (not even an autoresponder) regarding 11 of them.  Crickets.

39 clinical trials.
28 responses.
11 crickets.
From the 28 responses we a variety of data on the five questions.
Please read my paper at for the full scoop.

This project was as much about the journey as the five questions.
Elizabeth assigned a completeness score to each response.
If you answered all 5 questions, you got a 5.
If you punted or simply referred Elizabeth to a consent document, you got 0.
Average completeness score was 3.  On average, Elizabeth had 3 of her 5 questions answered.
Elizabeth assigned a tone score to the responses (respectful, collaborative, encouraging).  Sure, it’s subjective, but that doesn’t mean it’s not important.
Average 4
It really got interesting when we added the scores together for each response.
13 of the 28 responses got perfect scores of 10.
What we saw was that
when they were good, they were very, very good, and when they were bad, they were horrid.

Good customer service. 
It’s not rocket science.  It’s not neuroscience.  It’s common sense. 
If we fix some easy customer service problems that Elizabeth uncovered, the clinical trial path will be faster and easier.  Everybody will win!