FOI Man wants a balanced and calm debate on sharing of personal data. Is that really too much to ask?
At the end of last week I posed two questions. Firstly, are we assuming the worst of any proposal to share data? And secondly, if this is the case, is it damaging to society?
I was aiming to start a debate, and to an extent I was successful. It generated a lot of heat, but for me at least, not much light.
Let me just reiterate what I was not saying. I wasn’t saying that it should be easier for organisations to share data. I wasn’t saying that the Data Protection Act or confidentiality law should be weakened. I wasn’t saying – necessarily – that I agree with any of the examples I gave, including the care:data programme (the plan that will allow a central NHS body to extract data about patients from GPs’ patient records, and then share that data with other approved bodies). My mind is open on this, which is why I wanted the debate – I wanted to be persuaded one way or the other.
The problem I have is that whilst there are lots of blog posts and newspaper articles telling us to opt out of care:data and describing the risks in emotive terms, I’ve seen very little explaining why, therefore, it is being done. Presumably if NHS England are pressing ahead with this, somebody is giving them alternative advice. Somebody thinks this sharing is legitimate. But I can’t find anything about this. I get told to opt out or my data will be sold to companies (though NHS England deny this, so what am I to believe?), and if I want to know more, I’m given a link to Mail Online (which obviously has a reputation for balanced reporting of these matters). Interestingly, none of these articles or posts appear to link to the relevant website provided by the Health & Social Care Information Centre. They all point to other articles which subscribe to the same view.
This is exactly what I was referring to in my last post – the debate about sharing of personal data is marked by hyperbole and polarised opinions. That’s not how I want to make my mind up about important issues.
A lot of the fault – probably most of the fault – for this lies with NHS England, who could, as has been pointed out, have communicated the aims and implications of this project far better. But a lot is down to the tone of the debate. Just raising the possibility that there is another side to the argument attracted pretty strong criticism.
I have friends outside the information rights profession (if there is such a thing) who don’t understand why there is such opposition to this proposal. Scientists in particular who can see the potential for life saving discoveries through analysis of data. To them this looks like scaremongering. These are not stupid people. They can be persuaded by reason and evidence. They’re not going to be persuaded by just telling them there are risks. They, like me, want to know all the arguments for and against, see the evidence, and then reach a reasoned decision.
At the start of next month I hope to attend a meeting of the National Association of Data Protection (and FOI) Officers. One of the speakers is a representative of MedConfidential who have been vocal in opposing care:data. I’ll be interested to hear what they have to say, but I’d really like to hear someone from NHS England or the Health & Social Care Information Centre give the other side before deciding whether to opt out and encourage others to do the same.