Eight weeks to inform patients their data is going to be harvested, GPs warned


Madlen Davies writes in Pulse:

GPs have eight weeks to inform all their patients that confidential data from their records will be shared outside the NHS, as a campaign begins to encourage patients to opt out of the programme.

Pulse has learnt that NHS England has now written to all practices in England informing them that they must inform their patients that their care.data programme will begin extracting confidential information from GP records shortly.

It comes as the Information Commissioner prepares its final advice for practices on their responsibilities to inform patients that their data will be extracted if they decide not to opt-out of the programme.

Apparently the eight-week clock started ticking on different dates across England (Scotland, Wales & Northern Ireland are not currently affected):

NHS England has confirmed that practices in the north of England were notified on 23 August that they had eight weeks to inform patients. Practices in London were notified on the 29 August, those in the south of England a week later on the 5 September and those in the midlands and east of England written to on the 12 September.

The letter sent by NHS England said: Upon receipt of this letter, you will have approximately eight weeks to make your patients aware before the Health and Social Care Information Centre (HSCIC) will begin extracting data via the GP Extraction Service (GPES) for those patients who have not objected.’

Practices were also provided with posters and leaflets jointly produced by the BMA and the RCGP.

Dr Grant Ingrams, former chair of the GPC’s ICT subcommittee and a GP in Coventry, said that there were real concerns that practices had no idea how they should be informing patients.

The think tank mentioned in the article is 2020 Health:

We had a huge amount of interest in our fringe event held on Tuesday at the Conservative Party Conference on privacy and electronic health records. We are vocal advocates of electronic health records (EHR) and the potential for technology to improve health. However we feel very strongly that it should be each of us who is in control of our personal information, and the public does not have a clue about NHS England’s “care.data” programme that is about to share our medical records with a wide range of organisations. We think this is a threat to trust, confidentiality and accuracy.

MedConfidential has produced a template letter for those who wish to opt out.