Unearthing some trends in the organ donor register

Since I last posted, I’ve been immersed in donor data – trying to tease out some interesting trends and perhaps, more importantly, attempting to find out what’s behind them.

I have data going right back to the computerised register’s inception in 1994. And without too much investigation, I can see that take-up has massively plateaued in the last three or four years; a huge peak in the mid-90s has calmed to a mere undulation, even with extra publicity for the register and the mushrooming of joining methods.

1999 was an anomaly year, where the number of new joiners completely collapsed. Now, if there’s one thing I’ve learnt since I started my data journalism studies is that a weird result, an outlandish pattern can’t be taken at face value. There’s normally a reason for it. And it didn’t take me long to find one in this case – a software error, which was widely documented in the press.

Another stand-out observation is that people aged under 35 comprise the lion’s share of the register. However, this requires another pinch of statistical salt. Age is given as ‘age at registration’ – this remains static, though our real age doesn’t. I will have to look at age of new joiners each year, rather than cumulatively, to get a true measure of the break-down.

Three more quick things I’ve noticed…

  • of all regions Scotland, as a proportion of its total actual population, is best represented
  • people on the register are less likely to want to donate their eyes compared to other organs
  • and sign-up through the DVLA is the most popular source of membership. This, I would wager, is because people are obliged to make a decision. It’s human nature to put things off until prodded

Finally, to humanise what I’ve found, I’ve tracked down a case study. She’s a friend of a friend who had a liver transplant last year, after being diagnosed with cancer. Unusually she received a liver from a ‘non-heart beating donor’; this technique had been abandoned in the 70s but has been revived of late to combat the chronic shortage of organs available for transplantation.

It’s no surprise, given her experiences, that she is extremely passionate about boosting register numbers. She pointed me towards some work Richard Branson has recently done to raise awareness and of this, one statement stands out…

While 90% of the population support organ donation, just 29% are officially registered

I refer you to my earlier statement about human nature. Perhaps the biggest break on the register is apathy, something my dataset won’t (unfortunately) reveal.