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Collecting Good Health Data: An Important First Step

Debbie says:

As Jos at Feministing says,

“The Department of Health and Human Services’ (HHS) announcement yesterday that they plan to begin including sexual orientation and gender identity in health data collection probably doesn’t sound that exciting unless you’re a total data nerd.”

But it is exciting. Here’s Jos again:

There is a lack of data on LGBT folks, who we do know face disparities in health and access to health services. Without federal health data, it’s practically impossible to direct federal government resources to focus on health inequalities. Including sexual orientation in data collection will go a long way towards showing what LGB folks face.

The problem is especially stark for transgender and gender non-conforming folks, and the potential for positive change is huge.

Collecting data about trans folks is not easy. We’re a relatively small community, we’re spread out, and we’re difficult to reach since we face such immense barriers to access. Just figuring out the right questions to ask is complicated, when you realize language that makes sense to lots of trans folks doesn’t make sense to lots of cisgender folks – so how do you phrase a question that can be included in a general survey? HHS’ efforts to determine best practices for collecting data related to gender identity have the potential to change the problem, creating a body of knowledge about trans and gender non-conforming folks. And with data comes the ability to point to a problem and direct government resources to solving it.

I’m not quite a total data nerd myself (but some of my best friends are). And I’m a deep believer in the value of data, for exactly the reasons Jos states. Without the data, we can’t solve the problems. And yet, I’m inevitably aware that there are comparable populations on which the United States does have data–good data. AIDS, cancer, heart disease and stroke are all more common in ethnic minority populations, including African Americans, Latin Americans, Native Americans, Asian Americans, and Hawai’ians and Pacific Islanders. Researching this post, I discovered that health disparities seems to be an under-reported area in which both the Bush administration and the Obama administration have been doing serious work, but it’s not clear whether or not the data shows encouraging results.

So while I laud the new data collection initiative, I have to be skeptical about what we’ll do with the data. Maybe it’s because I also read this article:

Nations seeking to compete for well-paying jobs in research, development and manufacturing are now adding proven critical thinking activities developed in America to their science courses.

Meanwhile, more and more American teachers are postponing scientific experimentation until after the last [memorization and detail-oriented] state test has been completed.

Scientists spend little time memorizing details. They spend more time experimenting and interpreting the results. They know the details relevant to their own work because they use the information every day to reason about dilemmas. When they need a detail from another field, they tap the Internet.

To be sure, scientists need to know what information they are missing before they can look it up. Identifying gaps in knowledge is part of critical thinking.

The data the HHS is collecting can help fill those gaps in knowledge. Major props to Health & Human Services Secretary Kathleen Sebelius for taking this step. I’m just hoping that people with good sense, critical thinking skills, and good hearts get to decide how that data gets used.

One Response to “Collecting Good Health Data: An Important First Step”

  1. Lisa Hirsch Says:

    You could have an interesting talk with Donna about health disparities research; it is her area of interest.

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