I started another thread on this which some of you have posted on, but I am so glad that it is coming into the mainstream press. The only notice of this was a posting six weeks prior to go live on the NHSDigital website, and if it wasn't for the likes of MedConfidential and Privacy International, we would all have had our data scraped up and been none the wiser.
Some points to note. It is all your data, name, address, DoB, all diagnoses, allergies, drugs, operations etc which will be extracted on 1st July. You have up until 23rd June to opt out if you don't want this to happen.
The majority of the population won't be worried, and there data will be valuable in research, but there will be some for whom this is really important. If you are an abused spouse hiding from your partner, if you have had a medical procedure that you want kept between yourself and you doctor, if you are an unsettled immigrant, even if you wish to keep your religion or gender from prying eyes, then you may well wish to opt out, and to be denied this choice through lack of information is so wrong.
All this data will be used to create a massive database, with access to it sold by NHS Digital to any company that applies and that they can see no reason not to grant it to.
Look at the list on www.theysolditanyway.com/ to see where it will be going.
This was tried before, when NHSDigital's predecessor was forced to inform people first. They sent unaddressed leaflets to each household, delivered along with the Chinese takeaway and pizza delivery flyers, and most people put them in the bin without reading, which a sceptical me wondered if it might have been half the intention.
From the care.data debacle of a few years ago, 2% will make the effort to opt out, this will not affect the quality of research, but those 2% have the right to that choice.
You will hear talk about anonymised data and pseudonymised data. Anonymised data is just numbers of cases. That is fine, but if you have a very rare disease, and the company paying for your data also pays NHS Digital for data linkage to another database, eg demographics, you could easily be identified.
Pseudonymised data is re-identiable without too much research.
Identifiable data will not be released unless there is deemed to be a good reason, but a change of government could well demand the identification of all those of a group they are interested in. Do you really trust this government not to combine databases if it is to their advantage to have that control?
I am not scare mongering, I have worked in health informatics for many years, my only concern is that everyone should have a choice in what happens to their own data. A well respected colleague used to refer to 'data rape' - taking your data without consent, she had a point.