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Friday, 31 January 2014

Will You Share Your NHS Records?

You may have received a letter from your local NHS trust, giving you the chance to opt out of the NHS plan to share your health records with Big Pharma and others

I've found the process incredibly light on detail about how your data will actually be used, and I don't see how it can be said that any consent you give this way is fully-informed. You can't be expected to give a single 'yes' or 'no' for all your records in such a wide variety of circumstances. 

The issue of consent is not only a question of privacy, but also a question of the value that Big Data derives by exploiting your data without recompense, as explained here. The NHS scheme is just another Big Data play that takes a free ride on your data, and nowhere near the kind of mutually beneficial and trustworthy ecosystem that it's possible to construct today.

For instance, with your own data account you would be able to receive a request to use some of your health records for each specific project. You might choose to 'donate' some of your anonymised data to help find a cure that will be available to everyone at cost price. But you might put a high price on your data if it is to be mined by Big Pharma to create a premium branded drug. 

Hell, for enough dough you might even add your name and a nice photo!

Such a system would not need to be created specifically for your health records, nor paid for by the NHS. In fact, given the NHS record on technology projects it would be best developed by others.

At any rate, I plan to opt out of sharing my health records until the NHS cooperates with a more flexible, user-centric system.


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