Gimme My Damn Data - The Birth of a Battle Cry

By e-Patient Dave

A compilation of essays (blog posts) I wrote from 2008 to 2010 during my odyssey from cancer survivor to advocate for patient data access.

• Language: English
• Publisher: e-Patient Dave
• Release date: Sep 18, 2021
• ISBN: 9781393947981

Book preview

Prologue

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My 2007 cancer story is the context in which this book unfolds.

At the end of 2006 I had a routine physical. I needed an x-ray for a sore shoulder. Totally by coincidence, that x-ray also showed a spot in my lung, near the shoulder. And that spot turned out not to be a lung problem - it was a tumor of kidney cancer, which had been silently spreading through my body.

I would soon learn that I was almost dead: there wasn’t much data for bad cases like mine, but the one study I found said that half the people in my condition were dead within 24 weeks. But I didn’t die. To the contrary, six months later my treatment had ended, and I’d won: I haven’t had a drop of anything since then.

So although Gimme my damn data is indeed a protest cry, the backdrop for it is that I’m a guy who was saved by the best of medicine. This is not a protest against healthcare; it’s a call for us to work together to improve care by giving patients and families full access to as much of their health data as they want.

Part 1

Awakening and Inquiry

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A: Follow the money

B: The power is in our data

In a sense it started on January 28, 2008, with an awakening post, e-Patient? Yes, e-Patient. I’d been blogging as Patient Dave but I’d just learned about e-patients, described by the e-Doc America blog thus:

ePatients are those that use e mail and the internet to become empowered to manage their own health and become partners with their providers. … Approach with caution—this may radically change your views about your approach to the health care system!

And I said:

This looks to me like the Sixties motto power to the people, made real in the world, in a way that’s touching many many people and could be touching far more - even everyone.

And this:

I think I’ve found the answer to a question I’ve asked in recent months: "What am I going to do, what am I going to create in the world, out of my experiences of the past year?

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A: Follow the Money

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December 7, 2008

Tom Daschle’s Healthcare Book Critical

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I’ve started reading Tom Daschle’s book Critical: What We Can Do About the Health-Care Crisis. This is an important book, because Daschle is the newly appointed secretary of Health and Human Services. It’s his depiction of and prescription for healthcare in America. It’s concise but detailed and easy to read. You should buy it; really.

I’ll be summarizing it here using the approach I used in Best Care Anywhere: highlighting as I read, then posting the highlighted bits here.

So far, his reporting on our current reality matches what I’ve been able to learn from my reading this year of books and blogs.

As I’ve learned in studying data reported by PCPCC, the US is the only nation in the industrialized world that doesn’t have universal healthcare. Not surprisingly, our overall level of health is also worse, which is bizarre because as I’ve reported, our per capita spending is also the highest, by far – more than twice the industrialized world’s average.

And that’s part of why 48 million of us have no health insurance at all, leading to people avoiding getting care. Which spirals into severe episodes, despite the vast evidence that regular care avoids the