The Foundation for Science and Technology’s debate at The Royal Society on the better use of public health data (8 June) demonstrated a number of things, not least the informed erudition of several contributors from the House of Lords (a factor which did not go unremarked by attending MPs).
The debate centred on health data – the polarity of the collective good enhanced by the release of public datasets and their linking to other datasets versus data protection and privacy concerns. The public good was well illustrated by the Finnish example of correlating social mobility to the geography of neurological conditions – living next to the industrial Russian border is not good for your health! But they can do this in Finland as the health data is freely released and linkable to other public datasets and the political culture accepts that the benefits override the concerns about possible data mis use. The example of a twenty year study in Scotland of the impact of the use of statins on the public health – created in a open data cooperative “free haven” – made the point about the public benefits of open data.
In fact, responsible re-use and reasonable governance practices are so second nature to the medical research community that one wonders where the opposition to releasing data on privacy grounds is coming from. Pharmas operate under strict and well understood (and punitive) regulatory re use regimes, as do (just about) responsible broadcasters and newspapers. And anyway arguing the case for privacy at least at source is becoming quite difficult. Consumers readily submit deeply personal data to Tesco’s, Google and Sky – those shopping patterns and click streams married to your publicly available personal data is enough to profile us fairly accurately. For where there is perceived benefit (loyalty cards at one level; national health improvement at a rather more macro level) concerns for privacy rank fairly low with the voting public – and even less so with their Facebook generation children.
Overzealous efforts to protect personal data may well be a Canute like battle against the zeitgeist. The professor who complained that his diagnosis with cancer was within months followed up by his receipt of marketing literature at home and who blamed the governance structures around the Hospital Episodes Statistics may have missed the point - his diligent Googling of the symptoms and treatment might have been deductive indication enough for marketeers.
The irreversible facts are that reverse engineering of personal data from apparently anonymised or pseudonymised data is enhanced by the technologies and the vast amounts of personal data we freely offer up to several parties. The controllers of the network economy sit not in European jurisdictions but in California and further afield. And legislation – even that carefully reviewed and considered by eminent members of the House of Lords and the Royal Society – is too slow to emerge from its multiple transposition into the languages and cultures of the European Community. And when it emerges it is not fit for purpose in a world that has moved on.
Set in that context and with such an obvious prize in public health from correlating public and personal data, then surely the reasonable person (on the Clapham omnibus and yes in the House of Lords) must conclude that the default balance must be towards an open data approach.
The eminent Lords and Fellows were deeply conscious that they were probably the wrong generation to be pronouncing on the future. But their lasting contribution may have been an implicit acknowledgement that the privacy horse has bolted and the focus should be not on restriction but on responsible re-use, industry and professional cooperation, and strong regulation according to principles of confidentiality and a sensible balance of community well being and individual freedom.
Very John Stuart Mill, very Anglo-Saxon, very Royal Society – in fact, very sensible all round.