A very English debate - open health data

A very English debate - open health data

By admin On 9 June 2011 In Professional

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.

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3 Comments

  • admin

    30 October 2018 Open health data
    As a bit of a balance, I ought to mention the problem of the law. DPA and confidential information mean that you are rather circumscribed by what you can do with sensitive information. There are ways round it but the best way round is to ask permission – consent. But that can be difficult to get, and many people object to their information being held electronically by government at all, let alone linked, doctors object to the interference with the patient/doctor relationship, others object to potential involvement of commercial companies downstream or the type of research. Any consent would also need to be enduring, not project specific such as Biobank, and that presents legal problems as well, not to mention a public communications challenge. Predictably everyone has shied away from that. Safe havens are the other option which are being pursued at the moment, but they are cumbersome and expensive, and not without their own legal problems.
    So there are some thorny issues to be resolved, although everyone can agree that sharing medical data would be good for research
  • admin

    30 October 2018 Open Health data
    I agree with the sentiments of the article, with my usual caveat. Though people may not fully understand the implications of Tesco's loyalty card, or Sky, they provide the personal data voluntarily and for consideration - i.e. there is a mutual contract. Google and mobile 'phones are actually more extreme examples, and we have seen some but limited public concern over these. However this conscious contract does not normally happen with state data - by being a citizen you are in effect surrendering your privacy. Public hostility is of course in part due to ineptitude by Government - e.g. ID cards. So to your list of requirements I would a line about people being consciously invited to opt in (as I was when I agreed to join the Biobank - indeed at this point in time I am being consulted further about how the data will be used).

    The other point I would make is to avoid over-reliance on regulation - the Baby P. and care home scandals (Castlebeck and Southern Cross) underline this. Regulation is in my terms a "stable door operation". The real solution is upstream in having the right qualty and quantity of staff with high professional and ethical standards, well led, and properly trained and supported - what I would call a "thoroughbred solution" (it won't bolt then). Committees of Inquiry, civil servants and Ministers tend to see further regulation as the solution, when Ofsted and CQC were actually part of the problem (alongside poor public and private sector management). Regulation leads to a task-based approach, when what we need is a good people-based approach. The real emphasis should be on high quality public and private managers and care/health workers, and ensuring the right level and use of resources.
  • admin

    30 October 2018 I am with you
    I am with you on this one Shane

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