Thanks for this Helen. I was considering posting about it but wondered if it was “too political.” You are right - it is so sneaky. My form has already gone to the GP and I signed an opt out about sharing confidential data with groups outside of my personal healthcare when I joined my latest GP. I also opted out of the last attempt to release our data in 2016, " care.data" if anyone recalls.
For the past 30 years or so the NHS has been giving access to our anonomyized data (for a cost -recovery fee) to unis, commercial organisations and research groups all around the world for health related purposes so a lot of our private info is already out there. Easy to patch and cross reference data to de-anonymize it these days. NHS Digital site (and their paltry fees) is worth a look if anyone is interested in this. They claim NHS will never sell your data - weasal words in my opinion as they provide the data at “cost” of providing so basically give it away, organisations can apply for bespoke data sets that are record level (can relate to a single individual) and will even cross reference these with other bespoke data sets. Apparently organisations wanting the data have to fill in “lots of forms” about confidentiality and not selling on, justify why they need the data for health research etc. but does anyone police how the data is then used and kept and how could they?
This latest grab will pseudonomyize the data (not anonymise it) it means that the data is given a special code to obscure the name, DOB, NHS number etc and then a code can also be used (if permission is granted) to reverse it making all the personal identifiers visible.
Like everyone, I want to find better treatments and researchers need good data but I want to know that good checks and balances are in place and that data will not be leaked and then used for commercial gain, targetting or to vet people in other ways.
I thought this article was a decent overview of the issue: