For one reason and another I have spent the weekend thinking about some of the issues involved in organ donation. I have a pretty simple position. Donating your organs is a good thing and people should do it. I’d support an opt-out system of registration as long as there was plenty of opportunity for people to express their (possibly changing) opinion on the subject. I think I would also support a system of mandated choice where the choices available include ‘I don’t know.’ In the eventuality of death this would mean ‘ask my family’ but the point is that under mandated choice (or, rather mandated registration) it should be fine for people to be undecided. Indeed I think that under any system you should be able to register a ‘no’ or a ‘don’t know,’ information that could be useful to a family when consulted about the possibility of a deceased or dying relative becoming a donor. This is not something that is currently possible and is something the Nuffield Council on Bioethics recently recommended.
Anyway, as I mused on the best way to organise an organ donor register my thoughts turned to how we engage with our preferences and when we have opportunity to register them. Furthermore, given that one way to encourage people to register a ‘yes’, ‘no’ or ‘don’t know’ would be to get them doing it together, I found myself wondering: why isn’t there an app for that? I think it would be a great thing for there to be a facebook campaign linked to an app or a page that would allow you to register your preferences and, if you agreed, post this to your status and encourage others to register. You would, of course, have to build in some safeguards as people often leave their facebook logged in and others will play their little jokes. But a simple letter to the home address requiring online confirmation with an unique code might be sufficient. Even emailing a unique link a week later might be an option. I even thought an app on your phone might mean you could register your view and be asked to reconfirm on an annual basis. It may even assist medical professionals in determining the views of those in accidents or whatever. Although, as long as they know who you are, I don’t suppose it is too hard for hospitals to consult the register.
All this set me wondering whether I could register or amend my organ donation preferences online as this would be a prerequisite for a ‘social media campaign’. It appears you can, the online form is here and you can also do it by text message or by phone [details], as well as at the more usual times and places such as at the GP or when registering a driving license. It is quite simple, all you need is your name, address and DoB. This is then checked against the NHS register and, given a match, your preferences are recorded on the organ donation register. But, of course, quite a few people have my name, address and DoB and I am pretty sure it is quite easy to find out this information. The ‘failsafe’ is, apparently, that they write to you confirming the registration or the change to registration.
As a failsafe this seems rather minimal and it is possible that its minimal nature is the reason why there has not yet been a full on social media campaign. I think a facebook app could do a lot to get people talking about organ donation, registering their preferences and encouraging others to do so. The app could be configured so that it posted the fact of registration, or even details about your choice, to your timeline with a link so that others could then register their views. Before this happened I’d like to see a donation register that recorded a greater range of views including those who do not wish to donate at all (which would still be the presumption for those who are not registered), those who do not have a clear preference, and those who actively wish their family to decide for them. I’d also like to see a system that sought the active confirmation of the registrant at another time and place. A letter or an email a week later would be sufficient but the point is it should require the individual to confirm (arguably this should already be a requirement of the system). I would also like to see a system, and so an app, that required annual confirmation of registration. These might seem like suggestions that would lower the number of willing donors registered but I think that in fact embedding the registration of your choice to be (or not to be) an organ donor in the fabric of everyday life will, in the medium term, result in far more registered donors and far less problematic discussions with families of deceased individuals. The result will be far more transplantable organs and, so, far more lives saved.
Edit: David Hunter has picked up this story of the JME Blog.
Edit: Now there is an app for that!