As a doctor who has dabbled in epidemiology, Dr No is not unaware of the siren song of care.data. Greater minds, including epideiology’s Einstein, have frothed at the prospect of the data orgy to be had, only to have it dawn that theirs was a premature cigar. Yet even when left staggering at the catastrophes revealed, a hard core group still want care.data to happen, the idea being that if enough corks are inserted, then nothing will leak.
If only! Dr No remains persuaded that the call of care.data is indeed the song of a siren balanced on dangerous rocks. However alluring the song, the rocks remain; many rocks, but four stand out as especially dangerous.
The first is the impairment of doctor-patient trust, with the consequence that patients will withhold important medical information, delay seeing a doctor or even worse not see a doctor at all, from fear that personal sensitive data will sooner or later end up somewhere the patient would prefer it did not. The marginal are those most at risk, but who can really be immune to a shiver of apprehension come the day when, as we talk to our doctor, we know we are also at the same time talking to government computer?
Secondly, once the data is uploaded, it cannot be unloaded – short of taking the nuclear option – which places us at risk of the unknown unknowns of the future. We cannot know what future laws might be passed, or how those laws might make legitimate use of our personal sensitive data to disadvantage us. Imagine a world in which the DWP was allowed to tap into care.data? Or the CPS be hooked up to the data? Thanks – but no thanks.
Then there is the catastrophic error of blurring public service with commercial gain. The tinkle of the tills is alien to the world public service and research; so alien, in fact, that it is toxic. Add in that the infamous outsourcing company ATOS with its DWP connections were chosen to operate the data hoovers, and the tinkle of the tills starts to turn into a scream of profit. If care.data does go ahead, the data will be compromised – perhaps fatally – by absence of data from the many who, hearing the scream of profit, decided to opt out. Selection bias (the term for errors caused by selecting an unrepresentative sample) is pervasive, but knowingly using a data set one knows is self-selected at best risks bad science, at worst is unethical.
Lastly, there is the inevitable porosity of big data sets. Even if the competent were in charge, which clearly they are not given the ongoing comedy or errors, misinformation, PR disasters and general goonery now unfolding, sooner or later, by accident or design, some personally identifiable data is going to leak. Somewhere, sooner or later, some poor blighters will find themselves drowning in a stinking leak of their own personal data.
The Doomsday scenario? The government collects your data, flogs it to insurers and then destroys the NHS. All those confidential things you told your GP years ago come back to bite you – big-time. Surely that couldn’t happen. Or could it?