UK: How anonymous is NHS patient data? Dept. of Health granted 132 requests for identifiable patient data without patient consent

Sade Laja reports:

A claim by the Department of Health that patient data shared with private firms for medical research would be anonymised has been challenged by privacy campaigners.

The prime minister said last week that plans to share records and other NHS data would make it easier to develop and test new drugs and treatments. The DH says all necessary safeguards would be in place to ensure protection of patients’ details.

But Ethics and Genetics, a social and technology campaign group, says freedom of information requests show that under certain circumstances data anonymity would not always be guaranteed.

Data accessed under the secondary uses service, which is jointly delivered by the NHS Information Centre and Connecting for Health (CfH), for the NHS and its partners, is not always anonymised.

The CfH states on its website that the service only provides access to “anonymous patient-based data” for purposes other than direct clinical care, such as healthcare planning, commissioning services, public health and national policy development. However, this is at odds with the health department’s FoI disclosure.

When asked whether the data accessed under the service was always anonymised, the DH said it was “not always accessed in an anonymised format.” Access to identifiable information is, however, limited to those circumstances where legal permission has been granted by the secretary of state for health under the 2002 NHS control of patient information regulations.

Read more on The Guardian.

When an issue is so important, it is disturbing that public-facing statements and assurances are refuted by information that was only obtained under freedom of information. In response to another request under FOI, the Dept. of Health reported that on 132 occasions since 2008, it had granted access to identifiable patient information without patient consent. The Department had also granted access to pseudoanonymized data. The number of times that occurred was not indicated.

Should U.K. citizens be concerned? Any time patients do not know where their identifiable or “pseudoanonymous” health information has gone should be cause for some level of concern and scrutiny. That’s not to say that the same isn’t true here, but I don’t think Americans have any sense of how often this type of thing happens here.

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