Q&A: NHS England's care.data programme
All your questions answered on the care.data programme planned by NHS England to share patient data from GP records.
What are the care.data extracts?
A programme introduced by NHS England in which patient identifiable data from GP records will be extracted using the General Practice Extraction System and shared with the Health and Social Care Information Centre. They will link the primary care data with secondary care data and publish bulletins of aggregate de-identified information.
What data will be uploaded?
‘Sensitive’ codes such as HIV, STIs, pregnancy termination, IVF, marital status, complaints, convictions, abuse, will not be extracted, but all other codes, including diagnostic codes, investigation results and information about prescriptions, will be.
Who will the data from GP records be shared with?
As NHS England have been granted a section 251 exemption meaning they can waive confidentiality laws and share confidential patient information around the commissioning system, identifiable data will be shared with NHS England, commissioners, CCGs and CSUs.
Researchers and private companies can also make a bid to extract identifiable data if they have patient consent, or a legal exemption from consent such as a section 251 exemption. They will also be able to extract de-identifiable data if they go through an approval process which requires their bid to be scrutinised by either the Health and Social Care Information Centre, the Data Access Advisory Group or the Health Research Authority depending on the request for data.
According to NHS England: ‘Care.data will make increased use of information from medical records with the intention of improving healthcare, for example by ensuring that timely and accurate data are made available to NHS commissioners and providers so that they can better design integrated services for patients. In the future, approved researchers may also benefit.’
Can patients opt out?
Yes, Jeremy Hunt announced earlier this year that patients will be able to have a code put in their records which means that either their data is not extracted at all, or is extracted but not shared beyond the Health and Social Care Information Centre. Most objections will be respected, he said, except in special circumstances such as a civil emergency.
What do GPs have to do?
GPs have eight weeks to raise awareness among patients about them extractions - and their right to opt out. They are provided with resources including posters and leaflets jointly produced by the BMA and RCGP.
Does anyone object?
Some LMCs have said they are considering boycotting the programme, to ensure patients are aware of the extractions and can make an informed decision. The BMA have also received enquiries from LMCs and GPs considering putting ‘opt out’ read codes in all their patients records until they have explicit patient consent. Campaigners have also produced a template letter patients can send to their GP expressing their wish to opt out of the extractions.
The legal situation
NHS England have said that under the Health and Social Care Act, practices have a statutory duty to share information with the Health and Social Care Information Centre. However, GPs also have a duty under the Data Protection Act (DPA) not to share confidential patient information. The Information Commisioner’s Office (ICO) have said that if practices do not take ‘reasonable steps’ to make patients aware of the changed, they leave themselves open to legal action from patients under the DPA. The ICO added that it would provide definitive guidance once discussions with key organisations finished.