Any room left in that 17%
...cos I suspect I'm there as well. One of the pieces that really struck home was an article by Ben Goldacre - himself an advocate of responsible data sharing and as a doc who has called out pharma and quacks for their transgressions, someone whose opinion I would respect.
I had twins last year (it's great; it's also partly why I've been writing less). There are 12,000 dads with similar luck each year; let's say 2,000 in London; let's say 100 of those are aged 39. From my brief online bio you can work out that I moved from Oxford to London in about 1995. Congratulations: you've now uniquely identified my health record, without using my name, postcode, or anything "identifiable". Now you've found the rows of data that describe my contacts with health services, you can also find out if I have any medical problems that some might consider embarrassing: incontinence, perhaps, or mental health difficulties. Then you can use that information to try and smear me: a routine occurrence if you do the work I do, whether it's big drug companies, or dreary little quacks.
And therein lies the problem. reversing the pseudo anonymisation is possible - and while most of us will have no where near as high a profile as Dr Goldacre, our concerns are equally as valid.
His suggestion - painfully punitive punishments for data breaches/misuse
anyone leaking or misusing personal medical data needs a prison sentence, as does their CEO. Their company – and all subsidiaries – should be banned from accessing medical data for a decade.
Full article here - it makes for a good opener to any debate on this issue.
I will probably be equally as sceptical and cynical at the end but it is a debate that needs to be had rather than some stitch up behind ministerial doors.
Biting the hand that feeds IT
