Furore over care.data programme could jeopardise future medical research, doctors and charities warnBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g1761 (Published 25 February 2014) Cite this as: BMJ 2014;348:g1761
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Re: Furore over care.data programme could jeopardise future medical research, doctors and charities warn
The suggestion that doctors' concerns about the use - and potential abuse - of patient data amounts to "scaremongering" by the "anti-data lobby" is both ridiculous and naive.
No-one doubts the merits of a coherent and integrated database with which to conduct valid research to improve medical knowledge and health care.
However, the cognisant and sceptical among us have noticed that there are glaring omissions in the published preamble regarding access,purpose and security; specifically, criteria designating "approved companies" and "approved purposes"; detail around security of pseudonymisation; criteria re suitability of applications.
Virgin, KPMG (and perhaps soon also CCGs) are providers of health insurance, healthcare services and potentially commissioners also. Such conflicting roles within one organisation have clear and important implications for expedient use of confidential data, once the company has accessed that data for 'research' purposes; is that traceable?
The pseudonymisation process itself has now been acknowledged to be weak and will remain so, if open to retro-fit re-assembly by interested parties.
Furthermore, much of the data itself is currently poorly reliable. Hospital and primary care coding are implemented differently, and primary care coding varies hugely across the country. We are at great risk of uploading a huge amount of information which may presently be of very little real value in research terms.
So, for cogent reasons we are asking for explicit detail on protocols and safeguards.
Those who suggest that this is scaremongering would do well to examine how private corporations currently use consumers' personal data.
The blind trust shown by those wishing to rush ahead with care.data will neither protect patients' interests nor lead to quality research.
Competing interests: GPs are legal guardians of patients'confidentiality relating to medical records.