Monday, June 18, 2012

Twitter, kidney transplants and misinformation--Updated

Last week Indiana University (@IU_Health) live-tweeted a kidney transplant. They claimed it was the first unrelated-living-donor transplant Live tweeted.

It was dramatic and there was a lot of buzz among the kidney folk on Twitter about this. You can read some of the coverage here. It was exciting but it tasted too much like a publicity stunt for my taste. The counter argument, of course, is that raising the profile of living unrelated donors increases the likelihood that people will come forth and donate and I should just swallow my distaste and be supportive of the outreach effort.

We need more living donors.
We need more deceased donors.
We need more kidney donors.

As part of the Twitter publicity campaign, IU_health tweeted various facts about transplant. This one seemed wrong to me:

One every twenty minutes
Three an hour
Seventy-two a day
26,280 deaths a year 
That's a lot
That's too many

When I first read the tweet I read it as "1 American dies every 20 minutes waiting for a kidney transplant." Twenty-six thousand deaths out of the ninety-thousand people on the wait list seemed like a very high mortality rate, higher than the dialysis morality rate. A quick check in the USRDS Atlas revealed the mortality rate to be only 7% on the wait list.

When I went back and read the tweet again I saw that they were talking about people waiting for all transplants. This seemed more than a bit disingenuous because when we encourage people to become living donors we are only talking about kidney transplants (in 2008 there were only 250 living partial liver transplants). I assume that IU is not encouraging living donors for hearts and lungs. 

In 2008 there was only 4,638 deaths among people waiting for a kidney transplant. For all organs it was only 7,182 deaths. These numbers are from Health Resources and Services Administration. Similar data can be found in USRDS Atlas Volume 2 Chapter 7 (PDF).

We need more kidney donors and social media is a great tool to unlock the thousands of spare kidneys Americans carry around with them but the great need does not justify spreading lies and misinformation.

Literally minutes after I posted this I received the following tweet:

Kudos for IU Health in coming clean. Also Hat tip to Sunny Gill, one of our first year fellows for finding the HRSA website.

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