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Following the front page story in the Guardian today, NHS patient data to be made available for sale to drug and insurance firms, NHS England have posted a terse but incredibly carefully-worded response on their website.
In it, NHS England’s Chief Data Officer, Dr Geraint Lewis says:
“It is vital, however, that this debate is based on facts, and that the complexities of how we handle different types of data are properly understood. Patients and their carers should know that no data will be made available for the purposes of selling or administering any kind of insurance and that the NHS and the HSCIC never profit from providing data to outside organisations.”
You will note that Dr Lewis has not – because he cannot – refute the fact that insurers will be able to get hold of patient information extracted by the care.data scheme. And there are plenty of ways an insurer could profit from care.data without “selling or administering” insurance – tuning its premiums, for instance.
NHS England’s own ongoing application to the Health and Social Care Information Centre (HSCIC) to massively expand the uses and users of care.data makes it quite clear that “Examples of additional customer organisations may include:
- Universities and other academic research organisations
- Commercial companies
- Medical charities
- Medical Royal Colleges
- Information intermediaries“
And the Information Governance assessment of this ‘care.data addendum’ quite clearly states, at the bottom of page 5:
“Access to such data can stimulate ground-breaking research, generate employment in the nation’s biotechnology industry, and enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its customers.”
(We’ll leave it up to you to decide how “fair” the insurance companies are likely to be.)
And to Dr Lewis’ point about the NHS and HSCIC ‘not profiting’ from providing our data to companies outside the NHS, we can only say… why then do you publish a price list for accessing our medical information?
NHS England and HSCIC can call it ‘cost recovery’ or whatever they like; sophistry seems to be their standard approach. But most normal people’s understanding of the word ‘sell’ involves money changing hands in a transaction, which is clearly what’s happening here.
Whatever the value these extremely powerful bodies are putting on our medical information – and in this case it’s clearly not much – this is not the sort of behaviour that patients expect of the people and institutions that should be guardians of our data. Not by a long way.