Healthcare For Everyone: Stories versus Data

July 24th, 2009 by Mimi Yin

In my last post announcing our demo site “Healthcare for Everyone: An online data collection forum,” I talked about how “hard data is especially important when there is a profound disagreement over the nature of a problem.”

You might ask, don’t we have lots of hard data already? Certainly pundits and politicians alike are quoting a lot of statistics these day.

$46 million uninsured

$15,000 per capita per year on insurance, $6500 more than other rich nations

Still, these numbers are failing us. Why?

Because they fail to paint a picture that let’s us see the people behind these numbers. (Let’s ignore accuracy for now.)

They are Coarse Aggregates (46MM uninsured) and Banal Averages ($15,000). They are relevant to everyone and as a result, they are relevant to no one.

Who are these uninsured? What are their circumstances? Are they old or young? Poor or rich? Men or women? Parents? Single parents? Immigrants? Urban? Educated? How many “chose” to be uninsured? How many were rejected for coverage?

Who’s spending $15,000? Do they have pre-existing conditions? Is it out of pocket? Or are their employers footing the bill?

On the flip side, there are also a lot of people sharing their personal healthcare horror stories online. Here are just a few places where it’s happening

Yet, in their own way, these stories are also somehow not enough. Who are the people behind the posts? Not literally “Who are they?” as in “What are their actual identities?” But what are the specifics of their situation? Are they like me? How common are their experiences?

So it was gratifying to find these 2 forums on fertility and cancer, because hard data about each contributor contextualizes every post. (An outsider might find it difficult to understand what’s going on, but clearly a wealth of data is being offered up and consumed by those who frequent these forums.)

Fertility Forum

Still, even these data-rich posts leave me wishing for some way to see in toto: “Who’s in the forum?” and “What are they grappling with?”

Without some such aggregated “picture” of what’s being shared in these forums, how do any of us begin to see the sum and significance of all these stories?

We don’t pretend that our little demo site is going to paint the picture of what’s going on with healthcare in the U.S.

But for those who chose to contribute their data, we think our approach already does a better job of painting a picture of their healthcare situation (individually and as a group) than the forums and healthcare data reports we’ve seen so far.

Me and Everyone Else


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