NHS to allow database opt-outs

The NHS National Programme for IT (NPfIT) has said that patients can opt out of having their records kept on databases only in 'extreme circumstances'.

NPfIT outlined the position in response to media reports covering health minister John Hutton's comments on plans for storing records. He was reported by the BBC as saying that patients could "opt out" of having their records electronically stored, with no mention of conditions attached to the right.

This runs counter to NPfIT's previously stated position that, while patients could prevent their data being shared around the health service, they could not prevent it being held in databases. This is a core feature of its plans for a National Care Record Service of patient data.

A NPfIT spokesperson told Government Computing News on Monday: "In extreme circumstances, if someone can show that having their information held electronically on NHS databases will cause them or someone else unwarranted substantial damage or distress, then they can opt out of having their data held on NHS databases."

"This will apply to very few people. It creates significant difficulties treating people because clinicians have professional obligations to keep proper notes and in the future notes will be kept electronically. The full implications will have to be explained to patients."

The spokesperson also reiterated that patients could opt out of having their data shared. This will not require that they show it will do harm, but the NHS will take steps to ensure they understand the possible implications for their healthcare.

If they opt out, their data will still be sent to the national database. They will still have local electronic records and a national shared record, but it will be "locked down" so that no one [except possibly in the future the patient] can see it.

"Local records will also have more access controls so that data will only be accessible to those who generate it and their organisations, but will not be accessible to clinicians in other local NHS organisations," the spokesperson said. "For these patients, discharge and referral will be done in traditional ways, with a communication between clinicians rather than giving permission to access the patient's record.

"Patients will not get the full benefits of having shared records but clinicians will still be able to keep proper records (that remain within their organisations). Should patients change their minds, their 'national shared records' can be activated for sharing immediately and additional access controls around local records can be removed."

The spokesperson also said patients would be able to use the 'patient sealed envelope'. This would enable them to designate certain information to be hidden from normal view when data is shared.

"They can decide themselves, on a case by case basis, who they wish to see information they have hidden or sealed in this way. This allows them to have the benefits of data sharing while giving them more control over particularly sensitive data," the spokesperson said.

There may be rare circumstances in which the NHS may refuse a request to seal information, notably when it may clash with the need to protect the health or safety of NHS staff or someone else.