Friday, July 29, 2011

It isn’t nice, I want my data!

Each year, hundreds of thousands of pacemakers, ICDs and loop recorders are implanted in people all over the world. However, these patients have no access to the vast amount of critical data that is collected by their devices. I am one of those patients.

This song is inspired by the classic protest song “It isn’t nice” by Malvina Reynolds.

Follow along:
It isn’t nice to grab my data
from my implantable device.
Then to hog it, keep it from me.
That’s not right, I’ve told you twice.
It isn't nice, it isn't nice,
How can it be so hard to see
that I am the patient, it’s my data,
my heart, my ICD.

You ask me why I want these numbers
that you collect through my phone line
Then I give you all these reasons,
You still say no, that is not fine.
It isn't nice, it isn't nice.
It is my heart, my ICD
All I want is access, why on Earth...
won’t you give it to me?

Your excuse is: I'm unable
to make sense of the reports.
Will you please not patronize me.
Do I have to take this to the courts?
It isn't nice, it isn't nice.
How can it be so hard to see?
After all I am the patient
And the one with the ICD.

I think I know what your concerns are.
You want to keep me in the dark
I may learn who has the pacer
with longer life and bigger spark.
It isn't nice, it isn't nice,
How can it be so hard to see?
It’s time for you to unlock this,
I’m the one with the ICD.

I know it’s not nice to hack my pacer,
or intercept my Carelink call,
There are nicer ways to do it,
but you always seem to stall.
it isn’t nice, it isn’t nice,
but if my data is kept from me,
I just have no choice, I gotta have it

Why won’t you hear my plea?
One day you’ll go into retirement.
I hope still to be around,
with full access to my data.
Before they put me in the ground
It would be nice, it would be nice
If you are finally made to see
That the data is mine, just hear me out!
We have to set it free!

1 comment:

Bernard said...

Hugo we should talk. I've got type 1 diabetes and I'd like easy access to the data collected by my insulin pump, continuous glucose monitor and blood glucose meters. We have limited access, but I'd like to see an open data format so that getting the data is trivial.

Thanks for starting the conversation with the FDA.