Analysing the NHS organ donor register

Data journalism is all about pure facts and figures but you need a vested emotional interest in the information in order to bring it alive. For various reasons, the donor register is something I’ve been curious about for a while. Not so much its existence per se, but rather the profile of who is – and who isn’t – on it.

I’m just about to embark on a data project based on the register and will be doing a series of posts. I thought I’d kick off this entry by talking a little about why I chose this topic and what I hope to gain.

Organ donation has come a long way in the past half century, not only in terms of medical procedures but also the willingness of the public to become donors.

Donor cards were introduced in the UK, just for kidneys, in 1971. And the system was first computerised in 1994, after a tireless campaign by John and Rosemary Cox, whose 24-year-old son Peter died in 1989 following a brain tumour.

But despite huge strides in awareness, easier-than-ever methods of joining, and the fact that any person of any age, race or gender can donate, according to the NHSBT less than a third of the country (around 18 million people) are on it.

The demographic groups with the lowest take-up are black and Asian communities, who the NHSBT (NHS Blood and Transplant) say account for less than two per cent of the register.

There have been concrete efforts to swell the register numbers. For instance, since summer 2011, anyone applying for a driving licence is obliged to answer a question about joining.

But debate still rages. Late last year a furore arose about whether the NHS should pay for the funerals of donors. In a recent report, the British Medical Association put forward a proposal that patients be kept alive solely to become organ donors. And earlier this month, NHSBT held its first-ever National Organ Donation Congress, bringing together experts to discuss medical advances and identify how best to deliver a 50 per cent increase in UK organ donation by 2013.

A constant theme throughout these ethical discussions is the example set by Spain, which has the highest donation rates in the world.

Perhaps because buoyant numbers are so absolutely vital to the NHSBT, its website is brimming with fascinating statistical nuggets. But, based on the details people provide when they join the register, I’ve asked for some even meatier data via a Freedom of Information request.

I hope to identify some themes, some patterns and maybe even some gaps, in the register. Plus I’m in the process of finding case studies to humanise what I find.

I look forward to reporting back!

And you can find me on Twitter here

2 thoughts on “Analysing the NHS organ donor register

  1. With the amount of resources directed into registers I believe it is impirtant to understand a) why individuals do not register and b) whether having more individuals registered translates into more actual organ donors.

    Although Spain has ‘presumed consent’ in place of note in practice the family are always approached as they are needed to a) provide authorisation for the process and b) verify the past medical history of the donor

  2. Pingback: Giving data depth: analysing the NHS donor register | Help Me Investigate Health

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