Alerted by a tweet from a reader I’ve looked more deeply into what the NHS does and proposes to do with our data. It concerns me. Their own leaflet, “Better information means better care”, makes it clear that the NHS already releases information from hospitals and other non-GP parts of the NHS – what could be clearer than this:
We sometimes release confidential information to approved researchers, if this is allowed by law and meets the strict rules that are in place to protect your privacy.
As far as I can understand it, the big difference coming shortly is that all the details from your own GP surgery are soon to be included in this national database, linked together on a backbone of your NHS number, your postcode, your gender and date of birth.
I don’t know about anyone else, but whilst I want the NHS in all its forms to have access to my data, I’m not happy to leave it to them (or government) to decide which other organisations they “approve” to share it. That’s why I’m not happy with the system we are getting. It’s an “opt out” system. Fundamentally it assumes that we are all content to leave it to others to decide what counts as anonymised data, or to decide which organisations are OK to have our data and which are not.
Of course, if there was a system that invited me to “opt in” to my data being used for a particular purpose that I recognised as beneficial I’d be happy to make a judgement. Without that I can’t see any reason not to opt out. And as far as I can see, the only way I can do that is to ask (and rely on) my GP Surgery to record this on my file.