Patients who opted out from having their GP records shared as part of the Care.data programme have been ignored by commissioners behind a pilot scheme in Southend, privacy campaigners have claimed.

  • Privacy campaigners accuse Southend CCG of ignoring patients’ wishes not to have data shared
  • CCG insists those who “opted out” of Care.data would not be included in pilot scheme

Privacy group MedConfidential have also accused Southend Clinical Commissioning Group of breaching the terms of an agreement which grants it access to extract patient identifiable data.

The CCG has insisted that any patient who asked to opt out of having their data used for Care.data has been excluded from its scheme. The project intends to link GP data with hospital records to create a new, richer database.

Computer and stethoscope

Care.data intends to link GP data with hospital records to create a richer new database

Earlier this week the CCG began the pilot project extracting patients’ care records in order to better integrate health and social care, and monitor service use to better serve patients on its patch.

Southend has launched the project as part of its work as one of 14 areas named by the government as “integration pioneers” in 2013.

Patients were last year given the opportunity to opt out of having their data extracted from their GP practices for use in Care.data.

However, MedConfidential told HSJ it has been contacted by patients who had originally asked for their data not to be shared, only to be told by their GP their wishes will not be respected for the Southend scheme.

Phil Booth, MedConfidential’s coordinator, said: “We have been contacted by patients in Southend, of whom at least one asked their GP if their Care.data ‘opt out’ from last year would be respected.

“The GP told them that it wouldn’t because the pioneer scheme was separate.”

This appears to contradict rules imposed on the CCG by the Confidentiality Advisory Group, a central body which advises whether organisations should obtain access to confidential patient information without expressed consent.

One of the “conditions of support” attached to Southend CCG’s permission to extract patient data says: “Effective design, harmonisation and implementation of handling and respecting patient objections to be in place prior to any data flows taking place.”

Mr Booth said: “If Southend were to begin processing data they will have not met [that] condition of support.”

Patients that did opt out of Care.data had a “dissent code” added to their records (see box below), indicating that their data could not be extracted.

Dissent code

GPs of patients who registered their objections to having their data extracted for use for Care.data were told by NHS England to put a “dissent code” – 9Nu0 – on their records to show the patients’ decision.

This would then prevent the data from being uploaded to the Health and Social Care Information Centre where it would be combined with other records to create the database.

Melanie Craig, chief officer of Southend CCG, said: “The information we provided to GPs was written with the assistance of the Confidentiality Advisory Group and only sent to our GPs once the group had approved the content and wording.

“Any patient who already has the [dissent] code applied to their medical record, in order to have opted-out of Care.data, is excluded from this scheme as well.

“We are aware that a small number of patients have expressed concerns about the scheme and so we have been consistent in our communications with both GPs and residents as to how patients can opt out.

“If any resident or patient has concerns or questions about the scheme, the CCG including our GP leaders are more than happy to discuss those concerns with them.”