Updated. NHS England, having listened carefully to patients and doctors, have decided to go ahead with the plan to automatically upload your medical records to a central database. If you don't want this for your information, you need to opt-out.
Two weeks ago, an innocent looking leaflet dropped through the letterbox. A quick read of it, and I decided I needed to know more about the Health and Social Care Information Centre (HSCISC). OK, I've been to the website, consulted my GP practice, spoken to a few hospital doctors, and listened to the public debate. I'm definitely opting-out.
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Two weeks ago, an innocent looking leaflet dropped through the letterbox. A quick read of it, and I decided I needed to know more about the Health and Social Care Information Centre (HSCISC). OK, I've been to the website, consulted my GP practice, spoken to a few hospital doctors, and listened to the public debate. I'm definitely opting-out.
Why?
Firstly, the data which your GP will give the HSCIC will not be as anonymised as the information leaflet would have you believe. Your date of birth, gender and NHS number will be linked with your medical data. So, if there were to be a hack attack, or someone with malicious intent, all our personal information could be exposed.
Secondly, having worked as a researcher, I know that it is devilishly difficult to keep track of all the data and what it can be used for. In theory, specific permission has to be sought to carry out analysis of the data, but these applications are usually very broad-based, to enable researchers to carry out what we in science happily call 'fishing expeditions'. That is, we don't actually have a null hypothesis but we think we can make something from all the information. It is bad science but it pays the bills and almost everyone does it.
It's not right.
I have previously said that I wouldn't give blood for experiments in the research lab. Cells and genetic material from these experiments can be stored for years without anyone accounting for it. Any number of researchers can have access to this material, and with very few questions asked. I declined then, and I'm declining now.
In principle, I'm not against the use of data, or for that matter, donated blood or tissue, but until there are better controls across all universities, I do not believe that is possible to know exactly how your data is stored and used. And don't think that your information will stay in the UK either. It is widespread practice to share research data across research communities, in Europe and further afield. These collaborations maximise the research dollar, but will expose the vulnerability in data protection.
If you are concerned, make sure you register your opt-out with your GP today.