Care.data extractions on hold

Extractions of GP data for care.data have been halted while issues around patient awareness of the scheme are resolved.

Representatives from NHS England and the Information Commissioner’s Office presented on care.data in what was, at times, a tense session at the Emis National User Group conference in Nottingham yesterday.

The care.data programme will take a monthly dataset from practices covering patient demographics, events, referrals and prescriptions.

This will be linked with Hospital Episode Statistics and other data-sets to create new Care Episode Statistics.

GPs received a letter in late August explaining care.data and telling them that they have eight weeks to inform their patients about the scheme before extractions begin. Patients can opt out of the extracts via a Read code in their record.

However, GPs at the NUG said most patients will not be in their surgery within that eight week time period.

They were therefore concerned about their ability to fulfil their obligations under the Data Protection Act to make sure that patients are properly informed about their confidential information leaving the practice in identifiable form.

Emis users said the current publicity campaign, which involves posters and leaflets in practices, is not adequate.

Many argued that NHS England should write to all patients about the scheme as they were required to do for the Summary Care Record service.

ICO lead policy officer Lynne Shackley acknowledged the issues, saying the ICO is working with NHS England on a national communications plan about the programme and all extractions are on hold until that is finalised.

One doctor advocated a mass opt-out of care.data until patients explicitly give consent for their data to be used. The suggestion received a round of applause.

Rachel Merrett, who leads the care.data workstream of NHS England’s information governance taskforce, said that would be a breach of their responsibilities under the Health and Social Care Act 2012.

She said she hoped the new communication plan being worked on with the ICO, would alleviate many of the GPs’ concerns. She could not give a date for when extractions would begin.

"We are going to be making further information available about awareness raising plans regionally and nationally.

"The eight weeks is a minimum time for fair processing and in reality it’s going to be longer and you will be notified before any extractions," she told the audience.

Attendees felt they were being put in an impossible position, whereby in one instance they will in breach of the HSCA and in the other in breach of the DPA.

Shackley confirmed that simply putting up some posters and having leaflets available in the surgery would not be considered "fair processing" under the DPA.

In response to a questions about how to deal with patients with a particular concern about data privacy, the speakers advocated writing to them individually to explain the scheme.

When a GP asked who should bear the cost of informing patients, Shackley responded that practices should consider this as one of a variety of costs they bear in order to comply with the law.

"The consequences of getting something like this wrong don’t bear thinking about; the reputational issues would be extremely significant in terms of public trust and for that reason we are very keen to keep working with NHS England," she said.

Co-founder of QResearch and Emis user Professor Julia Hippisley-Cox said the data set being extracted will not be high quality unless it includes historical data.

Current plans are to only extract data entered since April this year. Professor Hippisley-Cox advocated a much larger extract, but said this should be pseudonymised at source, which would negate all the issues around the need to inform patients.

NHS England chief data officer Geraint Lewis said he is hungry for a wider dataset and NHS England will be making further requests in a phased process to expand the extract.

He also revealed that NHS England has asked the Health and Social Care Information Centre to review the possibility of pseudonymising at source, but said experts have told him that systems are not currently in place that would enable that across the necessary care settings.

Also, that the quality of data would not be good enough to allow it to be reliably linked with other datasets. "This is something I have got an open mind about, I can see the attractions articulated," he said.