21–30 of 122 posts
Bonus: you could set up a system where a person's data gets cheaper as more people query it!
(Not for me thanks.)
Would this enable the private industry to create services and analyses based off this cheaply available data? Yes, it seems heinous at first, but are there legitimate, palatable Big Data opportunities here, assuming the data is properly anonymized?
Would this enable the private industry to create services and analyses based off this cheaply available data? Yes, it seems heinous at first, but are there legitimate, palatable Big Data opportunities here, assuming the data is properly anonymized?
It is exceptionally difficult, if not impossible, to properly anonymize this kind of data, and this particular dataset is absolutely not anonymized.
* FAQ 39.
This would be straight up illegal in the US due to HIPAA, which guarantees a patient's right to privacy. HIPAA = http://en.wikipedia.org/wiki/Health_Insurance_Portability_an...
Form is here:
http://www.connectingforhealth.nhs.uk/systemsandservices/scr...
Will data be made available outside the NHS?* (PDF) [england.nhs.uk] http://goo.gl/CxqFVa * FAQ 39.
You can choose to have your information not included, it's an opt out system. Form is here: http://www.connectingforhealth.nhs.uk/systemsandservices/scr...
This seems downright evil. Disgusting. There is no justifiable reason for this data to be available in any sort of unanonymized form. Everything that is justifiable that can be achieved with it in anonymous form can be achieved with it anonymized.
The terrible part is that there is a good reason for a program like this. There are real reasons to collect and know this kind of data - it can make a huge difference to human health and well being. And that is why this is so bad. It's going to set back participation in any sort of electronic health record all around the world, if people see such a high profile program manifest as a privacy disaster.
This would be straight up illegal in the US due to HIPAA, which guarantees a patient's right to privacy. HIPAA = http://en.wikipedia.org/wiki/Health_Insurance_Portability_an...
No it isn't. U.S. health data can be sold if it is de-identified or with a patient's permission.