Sharing health data – safely

In principle I think this is a great idea. Big data is transforming industry after industry as well as scientific enquiry and bringing this power to bear on the health of the nation is a noble goal.

Unfortunately, the implementation of the scheme was a disaster – it was poorly communicated and many of the details of how privacy was to be safeguarded were simply not there and concerns were brushed aside in a patronising and dismissive manor.

The consequence was a backlash from the privacy lobby – hardly surprising in the aftermath of the Snowden revelations on NSA and GCHQ (although perhaps the absence of a public outcry to these revelations emboldened the NHS data planners).

Now the scheme has been put on hold for six months while the NHS regroups and decides how to avoid a mass opt-out. Writing in The Guardian this morning Ben Goldacre argues strongly that idea of data sharing is a powerful force for good, but the safeguards need to be much better. He called on people not to opt out – yet.

Personally I opted out several weeks ago but I always intended to reconsider if the privacy safeguards were improved. I sincerely hope that happens because I believe strongly in the ideal.

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