Patients to get veto on details recorded to spine

Patients may after all be allowed to decide to withhold sensitive information from the central electronic record system, known as the spine record, being developed by the NHS.

At a BMA conference next week Connecting for Health, the agency responsible for delivering new electronic patient record systems, is expected to announce details of a "patient guarantee", the FT reports today. It states that the new guarantee will provide patients with some control over what is recorded onto their centrally held record.

The new "patient guarantee" is intended to help allay the concerns of patients and doctors about the confidentiality and security of national electronic patient records, which can be accessed by any suitably authorised NHS staff member.

It will still be compulsory for patients to have basic demographics such as name and age on the system. They will also be given the option of putting information in a so-called electronic "sealed envelope" that NHS staff could only access that in an emergency.

Until now there had not been a mechanism for patients to opt-out of having their details recorded onto the spine record though. According to the FT the new "patient guarantee" will give patients a veto on having individual items put onto the spine. Patients will be warned that exercising this veto may compromise their care though.

Dr Paul Cundy, from the GPC’s IT committee told E-Health Insider: "I want to see the detail, because the last time they announced an opt-out it turned out not to be one."

If the new "patient guarantee" does provide a right for patients to determine what is recorded in their national electronic patient record, it will represent a significant shift in policy by the DH.

In April the National Programme for IT’s (now Connecting for Health) Caldicott Guardian Phil Walker said patients will be unable to make a single request for their records not to be held on the NHS Care Records Service. Instead they would have to ask their details are not recorded onto the national medical records database each time they deal with the health service.

The previously stated policy also required patients who did not want their medical information held on the spine to first demonstrate they would suffer significant distress or damage, and will be required to prove this afresh each time they come into contact with an NHS service

"What we want is an event-by-event permission from patients for recording data onto the spine," said Dr Cundy. He pointed out that one week a patient’s data might be as innocuous as a broken leg, but in another week could be as sensitive as details of a termination of pregnancy.

The current policy of the BMA and its General Practitioner Committee is that patient data should not be recorded onto the spine until concerns about privacy and confidentiality have been met. Next week’s 24 May conference is intended to address these issues.