Last week, the BBC News reported that British Prime Minister David Cameron said he sought change so that the National Health Service could automatically opt-in all of its patients so their medical data would be used for research. A patient would have to opt-out if he or she did not want the personal medical data to be shared. Cameron said that the data would be “anonymized,” but there are questions about anonymization and de-anonymization. (I’ve discussed de-anonymization and its privacy risks before.)
Now, the Guardian looks at the issues of anonymity, identification and patient data:
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 [Department of Health] 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. […]
The department said that there were instances where data was accessed after it had been pseudonymised. Although the information is protected – through NHS smart cards and pass codes – and access only given to relevant data by authorised organisations, pseudonymised data is not the same as anonymised information, and there are ways of making identifiable links.
“If requested ‘de-pseudonymisation’ would only be undertaken on a record-by-record basis and would require approval of the NHS information governance department,” the DH said. […]
Ethics and Genetics says the government needs to make a clear distinction between anonymised and pseudonymised data.