Skip to main content

Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it. 

While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed.

Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand.

I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs.

Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general public?

In a recent position paper published by the Kidney Health Initiative, one of their deliverables is actually describe as a 'Patient Friendly One Pager.' 

KUDOS!

Maybe it's a sign of things to come? I sure hope so.

Comments

Most Read

A drop isn't always a decline

As I prep for today's nephrology appointment, I thought this might be a good visual for people if they're just entering the world of PKD.  This is my kidney function over the past year and a half and  I've classified the data points into periods of stability and decline.  The key takeaway from this is that a single data point doesn't really carry much information - you have to look at the trend over time. And sometimes you have to wait a bit to see what that trend actually is. Did I freak out when I hit that period of decline late last summer (2nd decline period)? Without a doubt! But was the decline as bad as I initially thought? No (but it still sucked). And after the initial shock (and denial and grief) wore off, I was okay. And when my levels dropped to 23 at the beginning of this year, I'd been through enough to stop and ask myself what was going on. In this instance, I'd been put on a diuretic for five days to take care of some water retention....