Patients ‘may lose trust’ in the confidential nature of the health service if their data is used without consent, admits a risk assessment published by NHS England into their flagship care.data scheme.
The document says the care.data scheme runs the risk of degrading patient trust in the NHS and making information vulnerable to hacking. There is also a ‘small residual risk’ that patients will be re-identified.
But it claims that these risks have been mitigated by allowing patients to opt out by contacting their GP, holding identifiable information separately and de-identifying patient data before it is released.
It also argues that the existence of a national database will reduce the need for local processing of identifiable data, thereby reducing the risk of local breaches of patient confidentiality and the need to release identifiable data.
It also contends that the projected benefits of the scheme – including better patient care, efficiency and boosting economic growth – outweigh the risks to patient privacy.
The ‘privacy impact assessment’ into care.data published by NHS England gives the most complete information about how the Health and Social Care Information Centre will run the scheme.
The document says: ‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.
‘This risk is two fold: firstly, patients will not receive optimal healthcare if they withhold information from the clinicians that are treating them; and secondly, that this loss of trust will degrade the quality of data for care.data and other secondary uses of NHS data.’
It states that: ‘To mitigate against this risk, the NHS Constitution gives patients the right to object to their personal confidential data leaving their GP practice.’
The report also publishes the business case for care.data for the first time, and along with the benefits the data could provide for commissioning services and evaluating the NHS, also highlights the benefits for ‘economic growth’.
It says that the care.data programme will support economic growth by reinforcing the UK as a ‘global centre for life sciences and health research’ and creating a ‘vibrant App marketplace’ by making comparative data available to app developers and website designers.
It also adds that some people will never support the principle that the risks outweigh the benefits of the scheme.
It says: ‘Some people may believe that any use of patient identifiable data without explicit patient consent is unacceptable. These people are unlikely to be supportive of care.data whatever its potential benefits and may object to the use of personal confidential data for wider healthcare purposes.’
Pulse revealed last week that 41% of GPs intend to opt out of the care.data scheme, in a measure of how uneasy the profession has become over NHS England’s plans to link up and share GP and hospital data for the first time.