Friday, 6 May 2016
Today it was announced in the press that after an extensive and open public consultation, the new polar explorer boat would be named after Sir David Attenborough.
An excellent name, surely? Well maybe, but the public vote was actually in favour of the name Boaty McBoatface.
Now hang on. I thought this was a public vote. And surely, the purpose of a public vote is to come up with a solution that the public think best. So what has gone on here?
As so often happens, the voice of people (or in our case patients) is seldom heard. And when it is heard, it is listened to and acted on only when it suits. I don't really mind about the boat (although Boaty McBoatface was my favourite too), but I do mind about the principle of being asked and ignored. Or even worse, not being asked at all, and having a few people deciding that they know what's best for me.
As cancer patients we have a good track record of contributing our views. And the NHS, mostly, listens to our voice. There is huge concern about use and misuse of patient data at the moment. The care.data programme did massive damage to the trust that patients have in the NHS, or more specifically in those who want to exploit our data for purposes other than those which patients value.
As a result, more than a million patients opted out of care.data, saying they didn't want their data to be used.
But who asked those patients about what they DID want their data to be used for? That is what the use MY data programme is doing for us, and long may it continue. The programme has run workshops to look at the law, about data flows, about risks and drawbacks. But it has also tried to describe the benefits of using data, often not for each of us as an individual, but for society, and for those who will become cancer patients in their lifetime. use MY data is about equipping cancer patients with the knowledge to make not just a choice, but an informed choice, abut data usage.
So what should we do? Well, a few things.
Firstly, recognise that the public only seems to get what they want when their views are actually the same as those in power. That has to change, which is why use MY data is important to me.
Secondly, lets not take this lying down. Ok, so the boat name may be fixed now, but lets work even harder to make sure that the patient voice is heard, and that unlike poor Boaty, that our views are acted upon.
And lastly, by way of a protest, I intend to start a petition to try and convince Sir David Attenborough to change his name by deed poll to Sir Boaty McBoatface. That'll show them.....
Posted by DataVoice at 13:19