What the data is and isn’t telling us

I spend a lot of time looking for data. Specifically, I look for West Virginia kids’ health and well-being data. I look for who is collecting it, reporting it, and how they’re sharing it. I look at how our state’s systems, researchers, and advocates use it. And I look at how our state compares with others when translating what this data means to us, the general public. 

Our state has a data collection problem that runs the gamut, from collection to reporting, and how we use it to respond to public problems. Here’s an example:

The Youth Risk Behavior Surveillance System (YRBSS) surveys 9th and 12th graders on six categories of health-related behaviors contributing to the leading causes of death and disability among youth and adults. West Virginia is one of 44 states that participates in this surveying system.

Each state uses the YRBSS results quite differently. Look at how Indiana reports its results. Go to this page on Utah’s public health website, and you can see how many students reported they were sad and hopeless between 1999 and 2021. The dramatic increase between 2017-2022 indicates what we’re seeing on a national level, which is very concerning, which is why this data is really important to share. 

Now, you can find YRBSS WV-specific data on the CDC’s website, but you’d be hard-pressed to find it on a WV website. Try Googling it. While searching, you may find a link to WVDHHR’s resource page where it’s listed, but clicking on the link will take you to a dead end. 

I think of how meaningful this data could have been during the legislative session, when a group of undergraduates from around our state were making the case for more mental health services at our state’s universities. I remember Logan Riffery’s op-ed in the Charleston Gazette, where he wrote: “Our pleas for help seem to mean nothing to the larger body of lawmakers in Charleston. Justice and his advisers scoff at our suffering.”

I’ve been in his shoes—at the legislature, asking for support for kids’ health issues. I’ve been asked many times over the years by legislators where the data is. Where’s the proof? Your evidence? Why should this issue be a priority for us?

The proof they want lies in the hands of systems that aren’t sharing the data. It’s not in the hand of our decision-makers. The data is there but often useless, because nobody on that data chain— collect, analyze, report, share— is thinking about the end user and, importantly, the kids. 

Without the data, it becomes a lot easier to ignore real problems. 

As I end this Friday evening, I’m reading about a data release from the North Carolina Department of Public Instruction that shows the education achievement gap between White and Black students is increasing. A state board member said of the numbers, “Are they demoralizing? Yeah. Are they heartbreaking? Is it criminal? Yes, but they were criminal before the pandemic. This has merely made it worse and illuminated that force, and deepened the chasm.” 

And that’s what’s so important about data. What it reveals can resonate with a person in a position of power who can champion needed change. It can force their hands. 

But what if that data is never reported? Like many states, West Virginia reported its assessment achievement data last month. Did you see any data reported by the state or media that was specific to marginalized populations— Black, Hispanic, or disabled students, for example? I saw many states that did, like Virginia, Iowa, and Connecticut. 

There’s an old saying: What gets counted gets done. Our most vulnerable kids and those who care for and serve them need transparency and communication from our data collection systems. That data is ours. The kids need more of us to ask where the data is.