Government rejects consent call for SUS use

The government has rejected calls from the Commons Health Select Committee to apply consent to the use of Secondary Uses Service data for research purposes, including information in ‘sealed envelopes’.

In its official response to the committee’s report on the Electronic Patient Record the government says that the design of the Secondary Uses Services (SUS) ensures that patient confidentiality is protected and therefore consent was not required.

The committee had called for information in sealed envelopes not to be made available to the SUS under any circumstances without consent.

However in its response, the government refused to apply consent to usage of the SUS by researchers.

“Patient consent to the use of anonymised data is not required by law and the use of such data is not required by law and the use of such data for secondary uses, including research, is both accepted and actively promoted by the relevant professional and regulatory bodies,” the response says.

The 23 page response gives detailed replies to each of the 22 recommendations made by the Commons committee, many of which are accepted.

The government said it accepted the principle of patient control of the national Summary Care Record, but was against the idea of giving every citizen a health insurance card loaded with their individual record, an idea the committee had seen in action in France.

An idea similar to this was originally floated in the NHS 2000 plan, but was now unrealistic due to the NHS being free and accessible at the point of care.

“The fundamental differences in funding method between the French and English systems require different models…[In France] the fundamental rationale is that any (non-emergency) treatment requires the authorisation of the patient, whereas in the UK funding is a background process handled internally by the NHS and invisible to the patient,” the response says.

They added that through the use of role-based access controls, sealed envelopes, patients ability to add additional notes, emergency access and audit trails, the National Programme for IT had learnt a lot from the French and other global healthcare systems.

A pledge was also made to ensure that communication with patients is clear and understood fully by all adults whose data will be uploaded onto the Summary Care Record.

“The Department of Health will take all reasonable steps to ensure that intentions are understood,” they promise.

The government also agreed, in principle, to trial the use of HealthSpace as a method for patients to record their key health information, and be able to view full audit trails, showing who has accessed their SCR and under what circumstances. This will include mechanisms for investigating inappropriate access.

The government also pledged to keep under review the use of biometric technologies such as facial, retinal and fingerprint recognition to validate staff identity and to support calls from the Information Commissioner for custodial sentences for unlawful access to personal information.

Links

Health Committee report on the Electronic Patient Record

The Government response to the Health Committee report on the Electronic Patient Record