The ethics of big data is generating a lot of discussion these days. I read an interesting article today which showed that some managers in the health sector find the voracious attitude that “everything must go into the pot” “creepy”, while analytics professionals go on about the benefits of more (good quality) data giving more useful information. This article, though, was quite typical in the area in that it focussed on the US situation, with the problem that health-care providers in the US are driven by their revenue systems: the source of the data for big data health analytics in the US in the article is cited as the “Revenue Cycle Management (RCM) systems” which capture data mostly so that the healthcare provider can charge the right (i.e. the legally/contractually allowed) price to the funder. Of course it’s pretty much only the US that has this crazy system. Elsewhere there are fewer payers for healthcare for the majority of people, sometimes down to (almost) one in places like the UK. The US situation also raises large questions because of the crazy way its healthcare is funded in that patients are severely lacking in trust that the use of their data will not lead to significant individual problems, up to and including being sacked for being potentially too expensive to provide health insurance for.
Of course this does not mean that in other countries there are no big ethical issues with big data for health analytics. The proposals by the UK government to limit or ignore patients’ ability to opt out of the care.data program, through which private companies such as pharmaceutical companies would gain potentially significant private benefits alongside possible public health benefits, but with no guarantees of privacy or security of the data, raises similar questions to the century-plus debate about census data (before WWII ethnicity data in the US census was supposed to be inaccessible to the government at large – that guarantee was wiped away after Pearl Harbour, leading to the disenfranchisement, loss of property and internment of over 100,000 American citizens of Japanese descent).
Europe, with its more heterogenous health funding systems must explore the issues around all the models and not be driven by US-centric concerns.