Exclusive The Government should launch a publicity campaign to ensure patients are aware of the ‘fundamental change’ that is being planned in the use of their personal medical data, the GPC has said.
Dr Paul Cundy, chair of the the GPC’s ICT subcommittee, said that patients needed to understand that identifiable and anonymised data from their GP records was going to be used for purposes other than their care.
Dr Cundy argued that the General Practice Extraction Service (GPES) – which will be used to extract patient data from GP systems routinely to manage the NHS and be available to regulators and private companies – marked a sea-change in the way patient data was used over the past 60 years.
But the NHS Commissioning Board said the use of patient data in GPES was ‘nothing new’ and rebuffed concerns that it would be used for performance management of GPs.
The GPES Information Governance Principles, which were agreed by the GPC and the HSCIC to lay out patients’ rights, said that using patient’s data for ‘secondary uses’ should be publicised through a ‘public website’, as well as general information about GPES being ‘available in practices’.
They add that a mechanism will be introduced into the GPES system so that a patient’s preference to be excluded from extracts by general practices for secondary uses will be captured.
But Dr Cundy says this does not go far enough and that the data could be used to performance manage GPs and said surveys have shown patients do not want their data to be used in this way.
He says: ‘There’s a great move at the moment to say that patient data in the NHS is there for use by the NHS, but that’s not the way data has been used for the past 60 years. That’s a fundamental change and patients need to understand that.
‘Most patients do not understand that their information may be used to police CCGs, trusts, GPs. If you ask patients, if you do MORI polls they say “No- I don’t want my information to be used in that way”’.
‘If we’re going to be moving to an area where it’s being used to routinely managed what’s going on in the NHS- which is a legitimate aspiration- then patients need to understand that.’
As the DH consult on changing the NHS Constitution to make patients’ rights in relation to their data more clear, Dr Cundy called for a public information campaign so patients understand their data will be used for ‘secondary purposes’.
He said: ‘So I think were on the verge of a public information campaign for the populations which says that when you go to see your GP or go to A&E or to hospital- the information that’s been taken will not be used just for your personal care but for other things too.’
Dr Paul Thornton, a GP from Staffordshire and campaigner for patient privacy, said a publicity campaign could remind patients that they have not actually consented for their records to be used by GPES.
He said: ‘These are another example of patient data being given to third parties without the patients’ knowledge.
‘It’s a substantial erosion of the doctor/patient partnership. Perhaps patients will start to demand that obligations about data protection and confidentiality contained in the Data Protection Act are met.’
A spokesperson for the Health and Social Care Information Centre (HSCIC) said: ‘Keeping patients informed about who has access to patient data and how this information may be used has always been central to the GPES project. Communication materials for patients are currently being developed and will be published online and in general practices in March 2013.’
A spokesperson from the NHS Commissioning Board said: ‘The collection and analysis of anonymised data for the improvement of patient care is nothing new and happens throughout the NHS.
‘High-quality, large-sample statistical data is of course vital for ensuring all commissioning and clinical decisions are based on evidence.
‘The Board is simply working to ensure available NHS data is collated and used to the best possible impact in delivering evidence-based care. The Board will not receive any identifiable data and has not requested this. The data will not be used for performance management.’